Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.

 

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Archive - My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-29-02 17:54

Trevor,
As you know, I had been able to get my pain and coughing symptoms under control after I stayed out of sunlight for six weeks.

Recently, I went back to living like a normal person to see whether that would bring back my symptoms. It took about 4-5 weeks, and all my symptoms came back, even the incessant cough. The worst skin lesions I have ever had erupted across my buttocks: with red bumps similar to acne, in circular patterns, widening and developing into raised, thickened skin. Eventually the same lesions developed on my back and shins. Down my neck (below my ears), my skin darkened and became tough and bumpy within 12 hours of sun exposure. I got the blood tests done.

Here are the results of my serum levels of vitamin D and ACE:
25-hydroxyvitamin D is 14.3 ng/ml
1,25-dihydroxyvitamin D is 61.1 pg/ml
Angiotensin Converting Enzyme is 99

(I know the active vitamin D, the 1,25-dihydroxyvitamin D, is high and the ACE level is high).

As soon as I got the blood tests done I again stopped going out in the daytime without covering my skin and eyes before things got too bad. Would you care to comment?

Belinda
 
 Re: Vitamin D and ACE test results
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-02 18:12

Belinda,
Yes, the 1,25 level is very high, and so is the ACE. But the 25-hydroxyvitamin D is also low.

Many doctors, the ones who don't measure the 1,25-dihydroxyvitamin D values, would be giving you Vitamin D supplements to "fix" that low 25-hydroxyvitamin D value, and you would be a very sick lady right now...

The normal value for 1,25-Dihydroxyvitamin D is 29, with a standard deviation of 9.5. Less than 1% of the population would have levels exceeding 48. Yours was 61. That means 99.9% of the population would have 1,25D levels lower than yours.

However, Doc probably is probably not strong with statitsitics, and he/she may be more impressed that his Merck manual (click here) says that the normal range for 1,25-D is 20-45 pg/ml, and that you are at 61.

The normal level for 25-Hydroxyvitamin D is 25, with a standard deviation of 9.1. So you are in a low percentile there. 84% of the population would have a 25-D value higher than yours.

I have started to use the ratio of 1,25-dihydroxyvitamin D (in pg/ml) divided by the level of 25-hydroxyvitamin D (in ng/ml) as a more sensitive indicator of the granulatomous inflammation activity.

1,25-dihydroxyvitamin D (in pg/ml)
--------------------------------------------------
25-hydroxyvitamin D (in ng/ml)

For this ratio the normal value is 1.25, with a 0.5 standard deviation. So anybody with a ratio above 2.25 is likely to have significant inflammatory macrophage activity. Your ratio is 4.27, very high

This means there are a lot of active granuloma in your body busily converting all the 25-hydroxyvitamin D they can find into the nastier 1,25-dihydroxyvitamin D stuff.

So please stay out of the sun and enjoy life a little more...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-02 21:19

At a time when some patients are finding that their 1,25-dihydroxyvitamin D values are high, I thought I would list the symptoms that too much of this secosteroid hormone brings on. We don't know just how much is "too much", it depends on the patient. The 'high' threshold is most probably somewhere from 20 to 38 pg/ml. Anyway, here is a short list of symptoms:

Metallic taste in mouth
Fatigue and Somnolence (sleepiness)
Irritability
Tinnitus (ringing in ears)
Constipation
Frequent, Excruciating Migraines
Abdominal discomfort, Nausea
Photophobia (intolerance of light)
Muscle and Bone Pain exacerbated
Vertigo
Hyperthermia (incl. sweating)
Kidney Stones
Calcium deposits in Lungs (small white spots on Xrays)
Conjunctivitis (calcific)
Hypercalcemia
Numbness
Uncoordinated movement
Dizzyness / falling over
Loss of muscle control
Facial Palsy

These are the ones I think are most common. There are more symptoms listed at (click on "V", then "vitamin D")
and here.
..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-30-02 07:21

I would also suggest avoiding Tartrazine. This is a yellow food coloring called FD&C Yellow #5 or E102 in Europe. It is an immune system enhancer, something you don't really need

You need to stay away from Vitamin D if your 1,25 Dihydroxyvitamin D level comes back showing you already have enough (this is the usual case in sarc patients)

The only vitamin to stay away from is D. It is also called Calciferol.
Get milk that is only fortified with Vit A or has no fortification. I use TraderJoes. Vit D is also added to Breakfast cereals, get one (like weetabix) that is not enriched with it. Make sure that multivitamins and health food bars do not have vit D in them. Icecream often does, but Yogurt and Frozen Yogurt are usually OK. Cheese sometimes has both tartrazine and D. You just gotta read the label.

Many Herbal Supplements are loaded with Vit D and they don't tell you anything on the label. If they don't have a label listing the ingredients, then don't buy them.

Calcium fortification is OK, as long as they don't include Calciferol or Vit D. According to MUSC, Calcium fortification does not hurt sarc patients.

You have to read the label of everything you buy. Its a drag...

..Trevor..
ps: Don't forget to protect the eyes. Wear very dark sunglasses with clip-ons over them. You might have to wear them inside, if its bright. There is a complete renin-angiotensin system in the eyes, and it is connected directly to your brain via the optic nerve...
 
 Re: My Vitamin D and ACE test results are back!
Author: Caroline (---.win.org)
Date:   08-06-02 10:45

Hello All, I just received phone results today of my ACE level and both Vit. D blood draws. The nurse is mailing the hard copy. Don't "Slap me and call me stupid", but I am stumped as to how to interpret them.

ACE - 22, the 'normal' range is 9 to 67

25 hydroxy Vit. D is 42, the normal range is 10 to 68

1,25 dihydroxy Vit. D is 54, the normal range is 15 to 60.

Any help MUCH appreciated!

Thank you, Caroline
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-06-02 11:17

Caroline (from MO),
Please confirm the units that the D data was measured in. Do you know which lab processed the samples? And what units they were measured in?

Assuming that the 1,25-dihydroxyvitamin D was in pg/ml, (please check that it isn't mmol) then the population mean of 29 and standard deviation of 9.5 means that you are in the top quarter percentile.

99.75% of the population would be expected to have values lower than your 1,25-dihydroxyvitamin D. It is high.

But I am surprised at the value for your 25-hydroxyvitaminD. Are you taking any vitamin D supplements? Anthing called "Calciferol"? Or any Cod Liver Oil? Any calcium supplements? Any herbal medicinces that don't have a list of ingredients? Please take a good look at the labels and let me know that and the units of measurement (which I assume are in ng/ml)

The good news is that your ACE is low for a sarcoid patient. Very low. Are you perhaps on Prednisone? I need a few more details...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Caroline (---.win.org)
Date:   08-06-02 20:46

Hi Trevor,

To answer your questions:

I don't have the units of measure until I receive the hard copy. It is on it's way I am told. The lab is Quest.

Prior to this lab work I did not take calcium for months, probably 4 to 6 months. It did have D (400mg) which I did not realize until I had taken maybe a months worth in mid. january or february.

No cod liver oil, but about 5 days out of 7 I take either borage oil or evening primrose oil. Is that D also?

I had my last IV solumedrol (1 gram methylprednisone) the first week of May. It is my understanding the steroids stay in your system for approx. a year. I should mention that my ACE was only 31 (normal) when I was hospitalized and diagnosed with sarc by broncoscopy/biopsy.

Thank you for your quick response, Trevor. I find myself really hoping my sx. are because of D. At least the light in the tunnel might not be a train.

Caroline from Missouri
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-06-02 21:19

Caroline,
The methylprednisone has cleared your system by now. Solumedrol is not a delayed release form of the drug.

Vitamin D is stored in your fatty tissue as 25-hydroxyvitamin D.

You have a ratio of 1,25dihydroxyvitaminD to 25-hydroxyvitamin D of 1.28, which is almost exactly 'normal' (compare this to the values over 4 that some other members of our group are suffering from). A ratio below 2 means that there are very few granuloma converting the 25D to the 1,25D outside of the kidneys, where the conversion should be occuring. Which is good.

An ACE level of 22 is also indicative of no active inflammation, regardless of your ACE genotype.

But you have a very high level of 1,25-dihydroxyvitamin D. The average value is 29, and 99.74% of the population would have values less than you. You must cut it back or it will cause you neuro problems.

Normally, in a Sarc patient, the high levels of 1,25-dihydroxyvitamin D hormone would be coming from the extra hormone being converted from 25-hydroxyvitamin D in the granuloma. Sarc's 25-hydroxyvitamin D are therefore usually low. Yours is high.

I cannot guess at what primrose oil or borage oil have in them. But get them checked out for Vitamin D or discontinue their use. "Herbal Medicines" often have high levels of Vitamin D in them. You can also get high levels of vit D fortification in Breakfast cereals, 'Health' and diet bars, and milk. Figure out all the sources. You have far too much coming into your body.

Keep the calcium intake high, if you don't get enough calcium from your diet it is possible to find calcium supplements that do not have Calciferol or Vit D in them. Trader Joes stores sell some.

It could be that your level of stored 25-hydroxyvitamin D in your fat is high because it is still stored from before Febrauary, when you were taking the supplement, but that is unlikely...

My best guess is that you have high levels of the 1,25D hormone because you have been intoxicated with, or are currently ingesting, large amounts of Vit D (I assume you have not been sunbathing). A value of 42 is in the top 4% of the population, so you are getting all that 25-hydroxyvitamin D from somewhere. When you find out where it comes from, and stop it, your body will take a month or two to drop back to lower levels so that your kidneys can again begin regulating your 1,25-dihydroxyvitamin D to a more normal level again. Only then will your neuro symptoms disappear.

Of course, you must discuss this all with your doctor and make sure that he/she formulates the best course of action with you.

Sincerely,
Trevor
 
 Re: My Vitamin D and ACE test results are back!
Author: Doreen (207.190.199.---)
Date:   08-15-02 08:54

Hello All:

The first half of the results of my vitamin D tests are back. They were performed by Mayo in Rochester Minnesota. The 25-hydroxyvitamin D is back and the level is 22 ng/ml range is 8-38 normal values that were determined in wintertime in Rochester Minnesota. I still away the results of the 1,25-Dihydroxyvitamin D.

I was excited to get some results back, and had to post what I knew. Trevor if you can tell anything at all from this, I'd appreciate it.

Regards,

Doreen
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-15-02 09:13

Doreen,
The lab ranges don't seem to be a very useful indicator of "normality" on either 25-hydroxyvitamin-d or 1,25-dihydroxyvitamin-d

I suspect that is because the labs typically only get serum sent to them from sick patients to assay, and many of the immune disorders remain undiagnosed.

I use the data from the large Danish study of smokers D values vs non-smokers, as it represents a population pretty well. I have also been correlating the values with other studies, particularly the large Canadian study. There are some problems with all this data, my recent letter in the Canadian Medical Assoc Jnl talks about some of them.

Anyway, you don't have to worry about all that. You just want to know the answers. Right?

Well, I use a mean value of 25ng/ml for the 25-D values, and a standard deviation of 9.5
By this measure your 25-D value is very close to normal. However, any active inflammation in your body increases the D-Ratio, and I would expect a value to come back for your 1,25-D that might be quite high. For example, many of the sarc patients on this board who already have gotten data back are seeing D-Ratios 4.0 or higher. This would put your 1,25-D at a VERY high value, about 22x4=88. So you see why the two numbers are so important? There are so many issues that have to be considered when interpreting them.

A 'normal' level of Vit D intake (=25-hydroxyvitamin-D) in a Sarc patient can actually cause Hypervitamanosis D toxicity, because the granulomatous inflammation increases the D-Ratio from its normal 1.25 to much higher values. That is the reason Sarc patients are so sensitive to the Sun and to vitamin supplements. The 1,25-D value is the active hormone, 25-D is just an internmediate form. The active hormone value determines whether our bodies will experience toxic effects or not.

Anyway, so far so good. The biggest hurdle is in getting Doc to measure them. You have overcome that hurdle and we must now just wait with bated breath for the results...

..trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-03-02 15:22

Dear Trevor:
At last my blood work results have arrived. Vitamin D 1,25-Dihydroxy is 43.3 and Vitamin D 25Hydroxy is 25.5
Then for the Vitamin D 1,25-Dihydrox........15.9-55.6 pg/ml
For Vitamin D 25-Hydroxy........is 8.9-46.7 ng/ml

It doesn't state any other findings. Can you help me to figure this out?

Caroline McG.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-03-02 18:19

Caroline McG,
Your level of the active hormone 1,25-D measured at 43.3 pg/ml. This is much higher than the population mean, 29, and is 1.5 standard deviations high. Statistics say that 93% of the population would have lower values than 43.3

Your level of 25-hydroxyvitamin-D is right at the average for a normal population, 25.5 ng/ml. However, there is extensive data on Lupus patients, and a little data on Sarc patients, that indicates a mean of about 15-17 ng/ml is more accurate. Of the values that have been measured by patients here at SarcInfo the value of 25.5 is the second highest (the highest had 'recently' been supplemented for osteporosis).

The D-Ratio is 1.7, compared with a 'normal' of 1.25 and a standard deviation of 0.5. This is the second lowest reported so far.

Caroline, I need the following information to confirm my analysis of this data:
1. What was the value of your serum ACE, or the last ACE value you had done?
2. When was the last time you were on prednisone, and at what dose?
3. Have you taken any Vit-D supplements within the last 6 months?
4. Are you conciously trying to reduce your dietary Vit-D intake?
5. When the blood was taken, was it morning or afternoon, and how did you feel at the time? Do you normally notice any change in your symptoms between morning and afternoon/evening?

This is very interesting data. I know you are having problems with Loss of Balance and other worrying issues and I just want to get the analysis as correct as it can be...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-04-02 10:50

Dear Trevor:
I had the blood test done just before noon time just after having a CAT scan done. I had eaten breakfast as usual.
The test was done on 8/21/02.
The last ACE test was done at least 4 months ago...it was "a little high" but don't remember the number.
I am also using Pulmicort inhaler and Intel inhaler daily....for shortness of breath.
I take medication for low Thyroid also daily. All my medications were taken the day I had my blood work done.
Did I forget something?
Caroline McG.
 
 Re: My Vitamin D and ACE test results are back!
Author: caroline (---.win.org)
Date:   09-04-02 13:08

Hi Bill,

just wanted to let you know that one of my neuro's also prescribed Topamax on a trial basis for me. my husband and i called it stupimax because i would be mid-sentance and forget the word i was going to say next. i think this is called 'aphasia'.

our daughter who has migraine headaches on a regular basis is now taking topamax with great success. she had been on imitrex oral and shots previously.

migraine headaches are in no way sarcoid but i think it was just a long shot. i only took it about two or three months as i recall. (of no help of course).

i think sometimes drugs are found to help in other areas than initially prescribed. one drug i take, mirapex, is for parkinsons but it works wonders on my restless leg syndrome and i am able to sleep at night now.



caroline
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-04-02 15:57

Caroline McG,
Pulmicort is a corticosteroid inhaler. The inhaler delivers the steroid directly to the inflamed lung tissue.

I am guessing that the Pulmicort is depressing your 1,25-D values to the 93% level rather than the 99% levels of the other Sarcinfo patients. this is a fine point, being in the top 7% of the population certainly indicates that your 1,25-D level is elevated in and of itself, but I would have expected a higher 1,25-D, especially if your serum ACE is "a little high".

The other possibility is that there is some mild hypercalcemia which is depressing the 1,25-D level a little. I suggest you take a closer look at the serum and urine calcium levels. Lowering your 25-D and watching your Pulmicort dosage should alleviate any problems in this area.

Finally, since you are not taking any Vit D supplements your 25-D level is higher than the average sarc patient. That most probably means that you are taking in significant Vitamin D in your diet. Take a look over SarcInfo (Search for the word "cereal" and you will find lists of things to watch for)

So, cut down yout Vit D intake. Keep an eye on how much Pulmicort you are using (too much of it might hurt your lung muscles in a similar manner to prednisone).

Sunshine on the skin acts through a different mechanism, and will produce 1,25-D directly as well as via 25-D. Try and stay indoors as much as possible until your 1,25-D drops to the low-normal range (20-30 pg/ml in your case), or until your symptoms disappear

Sunshine will cause your 1,25-D to surge, and maybe changes in your Pulmicort dosage will also cause it to surge. Even this level (43.3) could be causing your balance problems, but I would expect blackouts to come only if it surged to higher levels (say, >60). These surges would occur over a 4-6 hour time-frame.

I hope that some of this information will be useful to you, don't hesitate to ask any questions that remain after you discuss it with your doctor.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Betty Campbell (---.43.220.203.acc07-dryb-mel.comindico.com)
Date:   09-10-02 01:32

Trevor,
(Funny thing happened on the way to the Forum!) I had blood taken 3 weeks ago for (as clearly stated on my copy of the Path form) :"--Serum 25 hydroxyvitamin D; serum 1,25 Dihidroxyvitamin D3; Angiotensin Converting Enzyme. My LMO received results for the 25 hydroxyvitamin D and the ACE, with promptitude, BUT no sign of the result for the 1,25 D3. Thinking it may have had to be sent to Sydney, I waited another 2 weeks before going back to see local doctor. No sign of results. Today I phoned the local pathology, part of a franchised group. I held on while they rang their H.O and someone there told me that the two Vit. D;s were one and the same thing. I vehemently protested and said how important the 1,25 D3 was for Sarc. patients and as my .25 D was low, the written advice was for me to supplement with Vit. D and calcium, which may prove to be not a good thing. So this person then transferred the call to the Austin Hosp. Med. centre and that person said don't worry--they still had some of my frozen serum and would send it off to the Royal Melbourne Hospital for urgent attention.

I got the tests done after a short holiday aboard Paddle Steamer on Murray River. Lots of sun even tho chilly days. Altho I covered up well each day when on shore trips, I forgot about doing so on board and the large recreation area was covered 3 sides with glass windows. The 3rd day saw me with bloodshot eyes and red eyelids, and that night, being Australiana night, I partook of small portion of Kangaro steak with quandong sauce. Don't think this agreed with my constitution! Next day Iwas too tired to get out of bed and slept all day and all night. Of the 19 persons on board I was the only one affected like this..and privately I put it down to the fatigue of Sarc. Back home and now wearing gloves etc whilst driving and watching TV at night with light sunnies and an eye shade. Hope to send you all 3 results soon..and thank you again for your light at the end of the tunnel...

Betty
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-10-02 05:43

Mr. Praline : I wish to make a complaint!
Owner : (hurriedly) Sorry, we're closin' for lunch...!
Mr. Praline : Never mind that, my lad. I wish to complain about this parrot, what I purchased not half an hour ago from this very boutique.
Owner : Oh yes, the, ah, the Norwegian Blue... What's, ah... W-what's wrong with it?
Mr. Praline : I'll tell you what's wrong with it, my lad. It's dead, that's what's wrong with it.
Owner : No, no, 'e's ah... he's resting.
Mr. Praline : Look, matey, I know a dead parrot when I see one, and I'm looking at one right now.
Owner : No no, h-he's not dead, he's, he's restin'!
Mr. Praline : Restin'?
Owner : Y-yeah, restin.' Remarkable bird, the Norwegian Blue, isn't it, eh? Beautiful plumage!
Mr. Praline : The plumage don't enter into it. It's stone dead!
......Monty Python....


Betty.
Isn't it frustrating when people we trust let us down?
"the two tests are the same" - indeed!
Let's hope that Austin Hospital get it right this time.
I visited to Austin Hosp in 1978. At that time they were the only place in Australia that did serum ACE measurement. But 1,25-D has been a common assay for nearly 20 years now. A difficult assay, but a well-known one.
Oh well....
Good luck,
Trevor
ps: it probably wasn't the meal that knocked you out, it was more likely the accumulated levels of D in your system. These are the days we need to get our 1,25-D measured The days when we want to just curl up and die It's the best way to find out how much it really surges between high and low...
 
 Re: My Vitamin D and ACE test results are back!
Author: Doreen (---.bur.adelphia.net)
Date:   09-12-02 17:09

Hi Trevor:

It's been a long time since I've been on to read postings etc. I was recently hospitalized with what I originally told was a secondary pneumonia. To make a long story short in the end I believe it was just the sarcoid.

On a followup visit, I asked AGAIN for the results of my 1,25 dihydroxyvitamin D test which was "missing". This was apparently still "missing" but I was told it would be tracked down as would my PFTs which had been repeated and were "missing" and I would get a call back (gosh, I hate that dreaded we'll call you because somehow I always end up falling between the cracks). I also asked for a consultation with a sarcoid specialist because obviously the MTX is NOT working as I am feeling worse and not better and studies indicate it has invaded the costochondral junctions between my ribs... My doctor asked me for names and numbers of "specialists" and I called National Jewish in Denver and got their consultation line number for him plus the names and numbers from three other specialists on the east coast and e-mailed everything to my doctor as he requested the same day.

Today a week and half later I finally broke down and called him back as I had decided I had been forgotten. I ended up getting a hurried voice mail from him that he was sorry not to get back to me, but felt I did not need to see any specialists and didn't need to get treated anywhere but locally and by the way my 1,25 dihydroxyvitamin D was 96 ng which was way over the 65 and that my PFTs were much worse. He then said I should go back to the first pulmonologist and perhaps should go on prednisone as there is no other treatment.

I'm sorry this is a long e-mail but obviously I am confused and frustrated. However, now we know that my 1,25 dihydroxyvitamin D was 96 (you had estimated it at 88) and I'm getting worse. Any ideas how I should go about getting adequate treatment? I am totally uncomfortable with prednisone aside from the fact that I have a horrible reaction to it (neurologic reaction) and right now I am in such pain. I have followed your other recommendations for staying out of the sun and watching the vitamin D content in foods.

Thanks as always for the wonderful work that you do.

Regards,

Doreen
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-12-02 21:35

Doreen,
I am sorry to hear that your Doctor has turned out this way. I think he is the Type 1 I described in this thread, the idealist who just wants his chance to "do good." Unfortunately he has now run out of ideas.

Coupled with his incredible breach of trust when he with-held the 1,25-D data, you have no choice but to seek another physician, one who is prepared to work with you on getting to Remission.

That 1,25-D data, at 96 pg/ml, is extremely high. It is the highest recorded (so far). It needed to be addressed, or at least you needed to be told about it so that you could take more vigorous steps to control your Vit D intake. With a 25-D level of 22 ng/ml there is plenty of room for you to cut down on D and sunlight intake. Somewhere around 12 ng/ml for 25-D seems an average target for a Sarc patient.

You can control the 25-D, it is solely dependent on your intake of Vit D in sunlight, food supplements and medicines. Vit D is stored in your fat reserves, and it does take some time for them to empty out (several months). Your inflammation turns the 25-D into the higher value of 1,25-D dependent only on your D-Ratio. In turn, the D-ratio is dependent on the amount of inflammation. So at least you need to work on the intake, what you can control. Your 1,25-D will then come down in sympathy.

I suggest you look around for an Internal Medicine specialist who is prepared to take you on as primary care. someone who deals with tropical diseases would be perfect (but don't set that as a necessity). For, since the MTX and earlier prednisone have not worked, the inflammation is most likely of microbial origin, and you need to start on antibiotic therapy while you figure out how to wean off the MTX. You current doctor cannot do this. He told you has run out of ideas (first by asking for the specialist list, second by saying that prednisone is all there is).

Hope this helps. Please ask if I have left anything out.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Doreen (---.bur.adelphia.net)
Date:   09-13-02 08:37

Hi Trevor:

First, make no mistake, my collegue will no longer be treating me with MTX.

I went to my internist today who I have seen for 10 years. I told him what happened with the MTX, he looked at my test results, asked me what information I had gleaned from my study into the disease and promptly prescribed me Minocin 100 mg q.o.d. and started me on Benicar right now 20 mg q.d. and he will raise in increments until I reach the 40 mg q.8h. recommended (he just doesn't want my bp to bottom out). Quoted the hypocratic oath "do no harm" (and said I was just going to have to bare with him on building it up which I am willing to do).

His spin on the whole oncologic experience was that due to the fact that my collegue's paycheck is signed by the same person who signs mine, it is difficult for him to be as objective as necessary. The idea is because we work together (I do his data management) this is not a good combination and he would prefer to refer me to specialists outside the area not connected to my employer.

So I guess there is some good news and light at the end of the tunnel. However, he wants me to stay out of work until I am feeling better.

Regards,

Doreen
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-13-02 09:07

Doreen,
Your internist sounds like a gem!

It is wonderful to have collegues working with you on figuring this disease out. I am sure my own life would have been vastly different if I had not done my PhD in Biomedicine and had all that expertise and brainpower to draw upon (20 years ago) during those "last 18 months" that the Doctors thought I would have to "get my affairs in order" before my demise

I have never tried Benicar at low dosage. I know that Diovan at low dosage was terrible. You might ask about breaking the tablets into two and having 10mg every 12 hours instead of 20mg every 24 hours for all the reasons that I describe in this paper at Clinmed. That paper should also be used to TRY and get Doc to do the ARB therapy the way we say it should be done. Your chances of it working are much higher then. Believe me, we have done this before

I really think the Oncologist will be happy as long as you are getting better. It is sometimes so frustrating to try one's hardest and to not achieve your goal.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Bill Murray (---.ri.ri.cox.net)
Date:   09-17-02 16:05

Trevor, I finally got my test results back. My ACE level is considerably lower than before. It used to be 97 but is now a 44. Is this still a high level???could the Prednisone be affecing it. I am still on this at 30 mg a day. It has been two months now. My Vitamin D. 1,25-Dihydroxy level is a 61. Is this high. According to the labwork it is high but the way i read it is it is only borderline. The paper says it is a 15-60 pg/mL. Please help me understand this. I have never felt worse than i have lately. the pain is unbearable without pain killers. and My fevers have been high more of the time lately. Please help me to understand all of this. Thank you. Bill
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-17-02 17:13

Bill,
Prednisone lowers the serum ACE value. That's one of the reasons why Doctors think that steroids 'work'. But I would expect 30mg of pred to have lowered it into the 20's, I expect it started very high.

The population average (mean) for this is 29 pg/ml, with a standard deviation of 9.5
You are at 61, which is (61-29)/9.5 = 3.3 standard deviations high.

Surf to the Online Statistical Tables
In Table 1, Left Tail, enter 3.3 for the Z value. Click the forward arrow to find the cumulative probability value (=0.9995)

That means that 99.95% of the population would have values lower than your 1,25-D value

Now, of course, due to the sampling curve not being accurate, etc, maybe it's not 99.95 but only 99.75 or 99.5, but the analysis is still the same. Your 1,25-D is too high. That is almost certainly why you are getting the symptoms of Hypervitaminosis D.

Did you get your 25-D measured so we can calculate the D-Ratio?

..Trevor..
ps: Prednisone lowers the 1,25-D value but only by about 25%
pps: Look in our papers for the reference to where the 29 and the 9.5 values came from
 
 Re: My Vitamin D and ACE test results are back!
Author: Bill Murray (---.ri.ri.cox.net)
Date:   09-17-02 17:25

Trevor, i thought that the test i had was the 25 d??i am not sure what that one is. The only two he ran was the 1, 25 and the ACE level. The ACE level he ran just because i had had extremyl high levels twice already. What do I ask for when i see him again??
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-17-02 17:40

Bill,
There is a link to the tests that need to be done at the top of each page titled "How does Doctor measure my ACE, and my D-metabolites?"

Without a value for the 25-D it is hard to guess why your 1,25-D is so high. Is it too much Vit D in the diet or medications, is it just too much sunlight, or is it just extremely widespread inflammation (a high D-Ratio indicates the level of inflammation).

In the absence of a 25-D measurement you will have to assume that all of these sources may be contributing to your 1,25-D

But at least you now have some tangible data to explain why you feel so awwwwful..

..Trevor..
ps: Due to the fact that physicians usually only refer very sick people to have 1,25-D tests done, the lab ranges tend to be no use at all. They are extended at the bottom end by Patients with undiagnosed Kidney disease, and at the top end by patients with undiagnosed inflammatory disease, IMO.
 
 Re: My Vitamin D and ACE test results are back!
Author: Dorothy S (---.roadrunner.nf.net)
Date:   09-18-02 07:26

Trevor,
I went to see my doctor today and I got the results of my tests:

1,25DI-OH VIT D Result 114 Flag H Reference 16-56 ng/L
25HYDROXY VIT D Results 49 Reference 25-200 nmol/L
Ace tests are not back yet.

The doctor hasn't got the VIT D calculated yet. I told her I would get it calculated and send it to her.

The doctor is wonderful she read everything I gave her and has got me started on ARB's Micardis 80mg, Benecar is not available in Canada and this is the equivalent.

She is going to start me on Minocin in 2 weeks time. She wanted to wait to see if there will be any side effects for me on Micardis before starting the Minocin.

She even gave me a months supply of Micardis free from her samples. I wish everybody could get a doctor as open minded and willing to learn as this one.

Dorothy S
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-18-02 07:55

Dorothy,
'Micardis' is Telmesartan, an ARB just as your doctor says. But not all ARBs are the same. Only a few are really effective aganst all the various types of Angiotensin receptors in the body. I have never tried Telemsartan, nor has any other sarc patient to my knowledge, so let's cross our fingers and hope it works out well. I assume you are taking 40mg morning and evening to try and minimize the effects we documented in this paper.

There is a huge difference between Diovan (Valsartan) (the second best ARB) and Benicar (Olmesartan), even though they are supposed to be totally equivalent. The biggest difference is that Diovan seems to not block the receptors in the nasal area, leading to symptoms like sinus congestion. Avapro (Irbesartan)(third best) does clear the sinuses, but doesn't seem to be as good at stopping the migraines. Benicar is the first that has given good all-round relief, but it is very new, and, as you say, not available in Canada yet. Give it time, it will come. It is made by Sankyo of Japan, and they are always trying to expand their global markets.

The units of measurement for your 1,25-D value are unusual, ng/L instead of pg/ml. In any case, the two give the same values, as there are 1000 pg in a ng and 1000 ml in a L Your value of 114 is very high, 9 standard deviations high. SurfStat says that 100% of the population would have values lower than that So we had better start working on getting it down.

The 25-D measurement converts from Canadian nmol/L into US units of 19.7 ng/ml, giving a D-Ratio of 5.7, which indicates that significant inflammation is making the 1,25-D hormone outside of your kidneys.

There is room for you to lower your 25-D value by staying indoors as much as possible and cutting Vitamin D out of your food intake. But you can't achieve enough in this way alone - you are going to have to stop some of that inflammation. As your Minocin therapy proceeds, make sure Doc measures the 1,25-D every month or so, to make sure it is going lower, and not higher. You also need to watch that 25-D level and try hard to get it down into the 12 ng/ml (=30 nmol/L) range, at least until the 1,25-D comes down to 'normal' (20-30 pg/ml or so).

Anyway, its great that the 1,25-D level has flagged the problem, let's move forward from here...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Mike (---.vnnyca.adelphia.net)
Date:   09-20-02 06:03

Got my serum values today

1,25 D was 52 pg/ml
25 D was 73 nmol wich should be about 29,2 ng/ml

52/29.2 is 1,78 Not so bad I think?

Anyway I have started to feel better now. The autumn is here so
the sun is away.

ACE was 12
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-02 06:13

Mike,
52 mg/ml is ((52-29)/9.5)=2.4 standard deviations high.
Surfstat says that 99% of the population would have values lower than z=2.4.

One problem is a high value of 25-D, 29.2 ng/ml (as you correctly converted). The population mean is 25 ng/ml, but typically a Sarc or Lupus patient has a lowered value, around 15 ng/ml (due to inflammation).

So you should be able to start feeling better as you work on getting those fat-reserves of Vitamin-D depleted. The 1,25-D is made from the 25-D, which comes from Vit-D intake and fat-reserves of previous intake. Cut the supply of 25-D and the 1,25-D will drop to more normal values.

Yes, the D-Ratio of 1.78 is good news. And your ACE (12) is low. If you are not taking steroids then ACE, together with the D-Ratio, indicates that your inflammation is very well under control. Work on getting the 1,25-D value down and you should find life much more enjoyable...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Mike (---.telia.com)
Date:   09-20-02 08:01

Hi again
I was at work so I did not see my results until now.
ONE thing makes me wonder.
The test says 1.25 D is 52 ng/l not ng/ml
AND
73a nmol/l nOT nmol/ml
I asume its a typo and should be "ml" not "l"

Can my 60 days of sun be stored in my body as 1.25 D and slowly decreas now as the sun is away more or less? I was out almost every day. Until I read about it here a cought alot of sun and later just on my face and arms.

ACE was 14.4 but its still rather low I suppose

and NO no medication what so ever. Just an aspirin from time to time.

I start to think that because of the almost no sun during winter in sweden, we swedes MAY have a less severe sarc condition. I can imagine living in Florida or california have to be hard.

Mike
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-02 08:20

Mike,
The unit ng/L is the same as pg/ml. Just multiply both the top and bottom lines by 1000 and you can see the identity nmol/L is the correct European unit for 25-D.

Fat-storage can be for quite a long time and seems to depend on the individual.

For example, if you look at these data curves associated with this Dr John Adam's paper, you can see that the 25-hydroxyvitamin-D concentrations are plotted in terms of YEARS, not months or days. And although one of the 4 patients 25-D levels dropped in just a few months (white circles), the one with white square boxes took a whole year for his/her levels to fall back to baseline (baseline was 50 nmol/L = 20 ng/ml)

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Mike (---.telia.com)
Date:   09-20-02 08:40

Ah I understand now.

So If I dont eat D vitamin and catch sun my 25 D will decrease
and there will not be so much to convert to 1.25 D wich is good.

But what If we get to little D vitamin?

Is that possible even if we eat normalfood and vegetables?
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-02 08:49

Mike,
In our full paper, "Remission in Sarcodiosis" we say
Don’t overdo it
As the D-Ratio becomes lower (<3.0) the patient will become less sensitive to sunlight. At this point the indoors isolation can be relaxed, as the body needs to be able to synthesize at least a minimal level of 1,25-dihydroxyvitamin D.

At this time we are uncertain whether exposure to the sun and diet supplementation are equivalent methods of supplying the body’s need for basal 25-hydroxyvitamin D. Initial indications point to diet supplementation as being the preferred source.

Absolutely you should be eating normal, healthy foods and vegetables. The only ones to avoid are the ones with artificially supplemented Vitamin-D levels. Eat non-oily fish, eggs, whatever. Eat healthy!...

..Trevor..
ps: Yes, I know egg-yolks and oily fish have Vit D in them. It is not very much and it is a less potent form than is used in artificial supplements. Personally, I love Tuna canned in water (the type WITHOUT "added vegetable oils")... Eat Healthy....
 
 Re: My Vitamin D and ACE test results are back!
Author: Mike (---.telia.com)
Date:   09-20-02 15:07

Thanx Belinda for your tip.

I guess I just get MY D vitamin from sun. I dont drink milk and I dont eat cereals. I have quit taking D vitamin like I did before this site.
Some food I eat MAY contain D vitamin supplement.

I'm just the regular Meat and french fries and beer guy.

I do hope beer doesn't contain D vitamin.

 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-20-02 15:26

Mike,
I love the Swedish summer. Sunset at 11pm. Sunrise at 3am.

You might not believe this, but it was actually while standing in the middle of the square in the Stockholm Old Town in 1986 that I suddenly realized just how powerful was the sun's influence on Sarc patients. I was waiting for a guide to collect us and take us on a walking tour of the Old Town area. It has been a long and winding road from there. But there was Gold at the end of that road...

..Trevor..
ps: And the Rickettsia discovery was made in Stockholm as well. Isn't it amazing...
 
 Re: My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-22-02 14:16

Caroline,

Thanks for that information! I am amazed at the things I learn from friends on the internet. You are right, Schlitz did at one time advertise their beer contained vitamin D. Here is a picture of a vintage Schlitz bottle with a label proclaiming the beer contains vitamin D.

You might want to do a bit more research, Mike, but from reading this article, it seems beer does contain several vitamins, including vitamin D. I suppose the amounts would vary.

Belinda
 
 Re: My Vitamin D and ACE test results are back!
Author: Kirk (---.dsl.sndg02.pacbell.net)
Date:   09-23-02 13:49

Hi all,

Well, my D levels were normal as well as the other things they checked a few weeks ago. I didn't get good news on the pulmonary function test however. I am currently down by 15% from the last time they checked and I'm now down to just .88 liter. Not good. Don't think there a lot of years left on this old ticker.

Kirk
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-23-02 14:09

Kirk,
What were your D levels? The exact numbers?

Do you trust people who didn't even know about these D tests a few weeks ago to be able to accurately interpret the results for you? Find us the exact number for each of the D Metabolites before you start getting depressed.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Kirk (---.dsl.sndg02.pacbell.net)
Date:   09-23-02 15:10

I sent the pulmonary doctor the site address this afternoon and a message and told him to get back to me. He was very interested in what I told him last Friday and wanted to check the site out. Right now I don't think the D level concerns me as much as the fact that there is fibrous growth throughout my lungs that has stiffened up restricting my breathing ability. What can be done about that, if anything? I saw my X-rays back in the early 80's and they explained them to me then. I have seen more recent ones as well and know there is a huge amount of damaged tissue. The right lobe is even much shorter than the left. I have to get to exercising again I know and that should help my overall health, but when I was before it didn't increase the capacity. It did however increase my ability to pull in air. .88 liter is low. Is the Minocin or one of the others you mentioned going to help that? I'm going to ask the doctor for more detailed results and if he would possibly send information to you. I thought I had what he wrote down for me here at work, but I must have left it at home this morning. I don't think they did all the tests that should have been done either.

Not depressesd, actually have felt pretty damm good the last 4 weeks, physically and mentally.
Kirk
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-23-02 15:30

Kirk,
Collagen deposition into the tissue (causing fibrosis) is made worse when there is an above-average level of 1,25-D

Note that I didn't say a high level - just above-normal

You should not have referred your Pulmo to this site - there is too much here for someone WHO HAS NO IDEA HOW SARCOIDOSIS FEELS to understand. Just print out the papers at
http://clinmed.netprints.org/cgi/content/full/2002080004
and
http://clinmed.netprints.org/cgi/content/full/2002080006

ps: Have asked for copies of your X-rays from the 80's? The labs will take a copy for you, as an individual, usually for under $100, even if your doctor won't order one for you. It is very hard to examine important specifics (like the little white dots of calcification) purely from memory.

..Trevor..
ps: get those exact values of the 1,25-D and the 25-D tests
 
 Re: My Vitamin D and ACE test results are back!
Author: Kirk (---.dsl.sndg02.pacbell.net)
Date:   09-23-02 15:55

Many chest X-rays have been done since the 80's on me. The VA won't give me a thing. As far as the ones done in the 80', they have all been destroyed. I have tried to get them for the doctors here before.

I printed out the documents you suggested and put them in the mail to the doctor. As far as giving him this site, I thought it would be beneficial.

I know the one D test was at 31.

Kirk
 
 Re: My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-23-02 16:54

Kirk and everyone else,

Sometimes it is in your best interests to have copies of your imaging film (X-rays, CTs, etc.) Having a disease such as sarcoidosis, where your condition may progress or improve over the long term (years), it can be beneficial to have all your film for comparison.

There are guidelines for the length of time required to retain film, and after that, the film may be destroyed because of the cost involved in storing it. It is best to attempt to obtain copies of film within three years, but you may still have (some) hope up to 10 years after the images were taken.

Generally, no imaging facility will "give" you the film. The comparative cost to you is probably minimal, though, when weighed against other things. If they are too busy to discuss your situation, you might consider making your request in writing to the imaging facility, asking them to discuss with you any fee involved before they proceed. These days, some images are stored in computer format and easily reproduced.

Belinda
 
 Re: My Vitamin D and ACE test results are back!
Author: Betty Campbell (---.80.220.203.acc05-dryb-mel.comindico.com.)
Date:   09-26-02 22:35

Trevor,
I am still awaiting result of 1,25 dihydroxyvitamin D3. Blood taken 38 days ago, for all three tests, and as explained in my posting of 10/9/02, the mix up with the 1,25 D3 test. Results of the other two as follows:-
ACE = 45 U/L (16-85)
25 hydroxy Vit.D. = 35 nmol/L. ref ranges (30-110) and remarks accompanying this were--"Patients with low normal (30-50) levels of Vit D should benefit from Vit D and calcium supplementation. Low levels of Vit. D may be seen with poor nutrition or lack of exposure to sunlight. Medications (e.g Anticonvulsants) may also lead to low Vit. D status"
Having ascertained that my local doctor had been notified that the frozen serum had been sent to Royal Melb. Hosp. and another 2 weeks from that date had gone by, I once again contacted Mayne Health who straight away got onto Royal Melb. who stated that it had not been done and would probably be at least another two weeks from yesterday, before they did the 1,25 D3 test. The Mayne health person told me it seemed that they are awaiting a kit from overseas!. At least it will be the same batch of blood as the others, as it is frozen stuff they will be using.
Today I rang another Health Path unit and asked do they do the 1,25 D3 test and at first they said yes, so I told them about my experience with Royal Melb. I hung on while they made further enquiries which came back with the answer "we send it to Royal Melb Hosp."
Does this sound normal? What would Monty Python have to say about it!!!
Cheers from one of the relatively lucky ones....Betty
 
 Re: My Vitamin D and ACE test results are back!
Author: Caroline McGuirl (---.vnnyca.adelphia.net)
Date:   10-10-02 19:13

Dear Trevor
My ACE level came in and it was 90. My internist called me and left the message on my machine. She said it was above normal. What is the normal range, by the way?
I had said that my Vit. D 3 levels were high
Vit. D 1-25 Dihydroxy was 43.3
Vit D 25-Hydroxy was 25.5
I am not happy to be sick but happy that my internist is now beginning to believe me when I tell her I don't feel well.
From the drug Prednisone I developed a Gluteus Medius tear...that now requires surgery, however the hip surgeon is concerned that my Sarcoidosis and breathing difficulty might be a problem. We are going to have another try at Physical Therapy for 3 months and return to him then and see if anything has changed. If not for the better, then surgery.

The shoulder surgeon has stated that Prednisone could have been the reason I sustained a tear in the Rotator Cuff of Right shoulder, but I also have complete bone degeneration in the socket and ball of the shoulder and that needs total replacement.
I guess I have to decide when.....if at all.....any of these surgeries are to be done.
Thanks Trevor for helping me help my physician see "the light".
Caroline McG. P.S. Should I now suggest Minocin in place of Tetracycline?
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-10-02 19:21

Caroline McG,
getting the attention of a care-giver is often half the battle. I was complaining of migraines for 25 years before I realized that none of the
doctors I had been talking with had any idea how debilitating the pain was. They figured that I should have been able to take an Aspirin and it would be all better. The aches and pains of Sarcoidosis are not something that one who has not experienced them can understand. So it is good that your ACE came back high!

There is a thread on interpreting ACE values which you should read for more info on that. As you can see, 90 is high by any measure.

ACE is short for Angiotensin Converting Enzyme, and it is produced by the inflammatory macrophages in the granuloma as part of the inflammatory cycle. The technical details of this are in our "Angiotensin Hypothesis" paper.

Your 1,25-D is elevated, but not extremely so. 93% of the population would have levels lower than yours. Your ACE is high, but not as high as some of us have had. Both of them taken together indicate inflammation in your body, but not an excessive level. The amount of 1,25-D in your bloodstream can rise quite rapidly (within 4-6 hours) in response to exposure to sunlight or exposure to Vit D in your diet. It may have been measured at a time when you were not under D challenge.

The researchers in this study of Lymphoma used a value of 42pg/ml as the threshold for determining their value defining who is at risk of hypercalcemia. Their population data is slightly different from the Danish data I normally use. By their measure your 43.3 places you at risk of hypercalcemia. So I don't think your Doctor would like to be told that. Print it off, anyway, especially the first few pages with the study summary on them.

Your D-Ratio, at 1.7, is not very high. It is above normal but much lower than the 4's and 5's that many of us have. Minocin would probably be no more effective than the Tetracycline has been, but it would probably be safer, IMO, if you took it in the 100mg every other day protocol, and it has been shown effective at reducing sarc skin lesions. You will also find that lowering your 1,25-D will reduce the frequency and severity of skin lesions, but maybe Belinda can give you a bit more info about this.

You need to work on getting down the value of your 25-D to the 12-17 ng/ml level that is more usual for sarcoidosis patients. Your 1,25-D in turn will drop to around 20-30 pg/ml, which seems to be the best that sarc patients can get to. It's the genetic pre-disposition that seems to set this lower limit.

I know that 25.5 ng/ml is a good level for the normal population, but sarc distorts all that. Once the inflammation has been contained with the
antibiotics, the only way to get the most important level, the 1,25-D level, back towards normal is by reducing your 25-D. You reduce the 25-D by fastidiously removing Vitamin D from everything that goes in your mouth, and ration your time out of doors.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Jillian fron North Dakota (---.vnnyca.adelphia.net)
Date:   10-10-02 19:28

Hi Trevor,
Got my test results back today and would like your insights please!

Ace is 61 IU/L Just read about the genotype, don't know mine.

1,25 D is 42 pg/ml
25 D is 27ng/ml

Thyroid T4 Free 1.0 ng/dl
TSH 3.88 uIU/ml

In her letter the Doc states: "there is not good evidence that your symptoms are due to hypervitaminosis D." She suggested giving you the results and that "at this time I do not see evidence for teatment with an angiotensin receptor blocking medication or any strong evidence to avoid sunlight or restrict vitamin D from your diet."

Thanks,
Jillian
PS: My dear friend Sabrina tells me I forgot to mention that I when I'm feeling my worst that almost everything "irritates" me and I get depressed.

And, yes, after many years she's still a good, supportive friend!
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-10-02 19:31

Jillian,
It is great that Doc had the conviction to write you a letter - I wish more were so concientious.

The Danish 1,25-D population data, which is the largest study and the most reliable we have, found that the mean value for 1,25-D in a normal population was 29 pg/ml with a standard deviation of 9.5. By plugging a value of (42-29)/9.5 = 1.37 as z into the Online Statistical calculator you will find that 91.47% of the population would have values lower than that.

The researchers in this study of Lymphoma used a value of 42pg/ml as the threshold for determining their value defining who is at risk of hypercalcemia. Their population data is slightly different from the Danish data I normally use. By their measure your 42 places you at risk of hypercalcemia. So I don't think your Doctor would like to be told that. Print it off, anyway, especially the first few pages with the study summary on them.

Your D-Ratio is 1.55, very close to the mean for a normal population. Your ACE is 61, very close to average for the DD genotype (even if a little high for some of the other genotypes).

So, on first glance, your Doctor's advice might seem to be completely correct. There certainly seems to be little sign of the systemic inflammation of sarcoidosis. So you might question why you have any symptoms at all...

Well, if you have the genetic pre-disposition to sarcoidosis, this is characterized as a lack of regulation on the concentration of the 1,25-D hormone. It can surge to high values with nothing to limit it, particularly if the body was exposed to direct sunlight. Under these circumstances you would most definitely be at risk of Hyperviaminosis D. If you had the genetic pre-disposition, that is...

Certainly, if you want to get your 1,25-D down to levels where it was not flirting with the top 10percentile of the population then you would gain from reducing your 25-D by reducing your Vitamin D intake.

Can you give us a concise history of your suffering and diagnosis(biopsy,etc) before I stick my neck out and try and read anything more into the data? Also, did the lab give a 'normal' range for their Thyroid T4 and TSH tests?

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: mona (---.rasserver.net)
Date:   10-10-02 19:48

Hi Trevor,
I just received my lab results inthe mail. They are

Vit. D, 1,25-HYDROXY 61 pg/mL ref. range 15-60
Vit. D 25-HYDROXY 44 ng/mL ref. range 10-68

Sed. rate 22 mm'hr female 0-22
Ace 13 U/L adult 9-67

ACE performed at Quest Diagnostics
Sed. @ USC Clinical Lab
Both Vit. D @ Quest Diagnostics

Please comment. Thanks, Mona E.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-11-02 11:24

Mona,
Your 1,25-D is quite high. 99.95% of the population would have values lower than that. It is way above the level at which you are at risk for hypercalcemia, (42 in this study) and I guess you must be experiencing the symptoms of hypervitaminosis D fairly badly. But in no way can it be considered a 'dangerous' level. You can take your time working on getting it down

It is most probably high because your 25-D is way above what it should be. You must be taking in quite a lot of Vitamin D in food or maybe in some vitamin, calcium, or herbal supplements.

Work on isolating where the vItamin D intake is coming from and you should be able to get your 1,25-D down to reasonable level (my target zone for sarc patients is 20-30 pg/ml). Your 25-D can go as low as 12 ng/ml if needed to get the 1,25-D into the correct range.

If you took any calcium, vitamin or herbal supplements within the last 6 months (or so) you may also still have some of the Vit D from them still stored in your body's fat reserves, and being converted slowly into 25-D and then into 1,25-D

Your ACE is low. Are you taking any ACE inhibitor (blood pressure) or steroid medications? If not, and if the D-Ratio stays low (currenly it is near-normal) then there is little indication of active systemic inflammation.

However, it is a bit too early to say very much about this, the D-ratio is not very definitive when the values of the metabolites are so high. But it could be that the symptoms you are experiencing are mostly due to the high 25-D level (and the genetic pre-disposition to surging 1,25-D levels from sunlight).

Naturally, you need to talk it through with Doc and get his/her perspective.

..Trevor...
 
 Re: My Vitamin D and ACE test results are back!
Author: Dorothy S (---.roadrunner.nf.net)
Date:   10-19-02 14:13

I got my ACE tests back today it was 1521 nmol/L

Just to refresh your memory my other test results are:

1,25DI-OH VIT D Result 114 Flag H Reference 16-56 ng/L (=114 pg/ml US units)
25HYDROXY VIT D Results 49 Reference 25-200 nmol/L (=19.7 ng/ml US units)

What does ACE mean and why is it so high?

How do I lower It?

I started my ARB's one month ago and I started Minocin today.

What is the normal lenght of time to be on this medication?

What happens when you stop taking this medicine?

Dorothy S
 
 Re: My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-19-02 15:25

Dorothy,

Click here to read what ACE means.

Belinda
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-19-02 21:02

Dorothy,
I have never heard of an ACE above 400. Surely there must be an error in reading the lab data? Can you drop by Doc's and get a look at the actual lab report and the units of measurement?

Could you please clarify all your other blood work data? I assume the 1,25-D should be 114 pg/ml (or 114 ng/L) and the 25-D, at 49 nmol/L, converts to 19.7 ng/ml

Both the ARBs and Minocin should be taken as long as they are giving you benefit.

You should be able to lower the ARB dosage as you get the inflammation under control. ARBs also reduce retinopathy and kidney damage from inflammation, and you might like to keep taking them for prophylaxis.

The job of the Minocin is to kill bacteria living in your granuloma and soft tissue. Depending on the degree of your inflammation it might take a few months for all the bacteria to be killed. You will need to repeat the Minocin treatment whenever there is evidence of the inflammation returning (an increasing D-Ratio). It is very difficult for the Minocin to get into the granuloma, that is what takes all the time, and is also why other antibiotics (except for doxycycline) are ineffective.

When you stop taking these medicines they leave your system cleanly and quickly. Minocin has a half-life of 17 hours, and has totally cleared your body in 48 hours or so. Depending on the type of ARB it will leave your body within 48 hours or so, and your blood pressure and/or inflammation will return to 'normal' over a week or so.

ACE is released by the inflammatory macrophages when they need Angiotensin II to produce more Th1 cytokines. It is an integral part of the inflammatory cycle.

Did I cover all your questions?

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Dorothy S (---.roadrunner.nf.net)
Date:   10-20-02 06:44

Trevor
Thank you for responding so quickly. When I was in her office she told me it was 1521 and the normal is in the mid 600 range. I live in Canada so maybe we use a different measurement here. When I go to my doctor's office in 2 weeks time I will get a copy of the test.

Belinda,
Thank you for the link. It answered a lot of my questions.

Dorothy S
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-20-02 07:44

Dorothy
It is great that you are taking the Minocin. that should do the job

The same unit is used to measure ACE all around the world. It is measured in IU (International Units). Your lab has used nmol/L, which is a very strange way to measure it. Normally 1 IU = 1 nmol/min/L, and I cannot find anything to convert such disparate units. The lab said its normal range was 0-670, however, so your ACE is very high by their standards (whatever they are)

NOTE: To Everyone:
IT IS ABSOLUTELY CRITICAL that you yourselves get printed copies of all your tests for for D metabolites and serum ACE.

You all have the ability to research the Internet to find out exactly what these metabolites are, how they are measured, and how to interpret them. 99% of doctors never research any patient data on the Internet.

Do not try to get these photocopies during office visits. Call the Nurse and ask to pick up the copies. The nurse will clear this with Doc and arrange for you to pick them up.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: MG (---.255.202.62.dial.bluewin.ch)
Date:   10-21-02 13:08


Dear Trevor,

I found this site just a couple of days ago (still have to do a lots of reading)

Diagnosed with the Sarc a month ago. (severely swollen ankles and enlarged lymph nodes in the lungs. No granulomas in lungs or any other organs)

Taking Prednison - first week 50 mg, last 20 days 25mg. From tomorrow would be taking 20mg. If everything goes well, in a week should be 15mg.
Also last 10 days I have been taking the Calcium Sandoz 1000mg (it has 800mg Calcii Carbonas, Calcii Lactas and Gluconas 5.23g - that's written on a label) and Vitamin D (cholecalciferol 4500UI/ml, 8 drops/day)

Pain and swelling are gone, but I experience regular night sweating which leaves me with a maximum of 4-5 hours of sleeping per day, which, also, apart from the illness itself or Prednison (?) might be a reason that I am extremely tired during the afternoons. (spending in the office 9-10 hours per day + 2.5 hours of commuting - at the moment it is very hard to cope with)

In front of me I have the blood test results from 11 Oct 02 ( more than week before I have started taking the Calcium and Vit D):

25-HidroxyVitamin D3
Result: 4.7 mg/l Reference 10-42

1.25 DihidroxyVitamin D3
Result: 35.1 ng/l Reference 19.9 - 67.0

Leukocyte Result 11.62 Ref 9.36



Any comments on above or guidance would be much appreciated

Thank you
MG
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-21-02 13:33

MG,
That data is tough for Doc to interpret. You see, unless he/she understands how your body should be metabolizing the Vit D he would look at the 25-D and say that you need supplementation. But you do NOT need supplementation. In fact, it will make you ill.

You see, the active hormone, the 1,25-D, is 35.1 pg/ml, just a little above normal (at 42 you would be very high). The 1,25-D concentration in your body varies on a 4-6 hour cycle, and this blood test might have been taken at a low trough or a high peak. You can't tell from one value. Usually, however, we have blood tests when we are rested and cool, calm and collected (in the morning). It usually represents the lowest that our 1,25-D will be during the day. And it is at the end of the day when the most symptoms occur

But if your Doc knew how to read the D-Ratio he would see that you are at (35.1/4.7)=7.46
This is a very high D-Ratio indeed, and it means that most of your 1,25-D is being made in inflammatory granuloma, and not in your kidneys.

Your 25-D, at 4.7 ng/ml, is low because you have cut down on your D intake and sun exposure (possibly subconsciously) in order to control your 1,25-D levels and keep your symptoms under control. It is low because any 25-D that hits your bloodstream is immediately and energetically metabolized to 1,25-D by the inflammatory granuloma.

The aim of giving you vit-D supplements is to increase your 25-D level to what Doc has been told is "normal". If your 25-D was the normal 25 ng/ml (or so) your 1,25-D would be at (25 x 7.46) = 186 and you would be one very, very, sick puppy...

The Calcium won't do any harm.
Prednisone, provided you continue to taper it quickly to zero, also will not do very much harm. But you won't be able to stop the prednisone unless you get the 1,25-D in the 20-25 pg/ml range (those numbers are based on my experience). You won't be able to do that while you take the D-Supplementation (IMO)

Minocin will reduce the D-ratio by killing off the microbes that are causing that inflammation. Prednisone will make it very much harder for Minocin to do its job. The pred is suppressing your body's response to the hostile bacteria that the antibiotic is trying to kill. The FDA warns "There may be decreased resistance and inability to localize infection when corticosteroids are used"
So you will have to keep tapering it aggressively if you are to achieve remission.

..Trevor..
ps: Doc can call me at the phone numbers on our papers if he/she needs more info
 
 Re: My Vitamin D and ACE test results are back!
Author: Betty Campbell (---.36.221.203.acc15-dryb-mel.comindico.com)
Date:   10-24-02 05:22

Trevor,

At long last (63 days since blood taken), my 1,25 D3 result has come back from Royal Melb. Hospital, after another phone call from me to Mayne Health and from them to RMH, who got onto it straight away~!

The 3 results as follows:--

ACE 45 U/L Ref (16-85)

25 hydroxy vit. D 35 nmol/L Ref. (30-110)

1,25 dyhydroxy vit D3 94 pmol/L Ref (78-190)

The remarks attached to the 25 vit.D result say I would benefit from Vit. D and calcium supplementation etc etc.

Please could you interpret this for me to show my local doctor who is very understanding and interested, and says he will start me on whatever you suggest. Being in Aussie land, I think Benicar and Diovan unavailable at this time and I query Minocin being available. I know Avapro is o.k.
It is great to have my LMO interested as my dermatologist is absolutely ANTI THE INTERNET and does not wish to know about any of my symptoms which do not pertain to my skin. She tells me the breathlessness and fatigue have nothing to do with the Sarc. This is why my LMO plays a big part in my progress, which is not too bad now the 15 months of steroid myopathy has abated, and my lungs being clear makes me one of the lucky ones. My dermo doc would like me to stay on 2mgs Pred for the next two years!, and when I tell my local doc I have weaned myself off Pred since beginning of this month, he laughs and says, "what if the unbearable itches come back?"

I do trust this makes sense Trevor, but bear in mind I am surely the oldest Sarc on the books.--78 in three months time.

Regards, Betty
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-24-02 10:07

Betty,
Your 1,25-D value converts to 36.19 pg/ml, while the 25-D converts to 14 ng/ml. The D-Ratio is therefore 2.6

IMO, if you have the genetic pre-disposition for sarcoidosis you need to get your 1,25-D down to 20-25 pg/ml to ease the 'neuro' symptoms. Your D-ratio is well above normal, indicating that you probably do have this genetic pre-disposition. So, if you were able to lower your 25-D level even further it would lower your 1,25-D level (the important one).

Corticosteroids nomally suppress the serum 1,25-D a little, somewhere between 25% and 50%. However, they do not necessarily suppress the paracrine tissue 1,25-D concentrations, and therefore often do not help the 'neuro symptoms of sarc'. I gather that you had these D tests after weaning off prednisone, and therefore am not taking this effect into account in my analysis.

The ACE is unremarkable.

This is all consistent with your having skin sarc problems, and also consistent with mild 'neuro' problems, especially after exposure to sunlight.

Take a look at the pictures of Skin Sarc at this link, and the remission of that skin sarc under Minocin treatment. Show them to Doc, and see if he agrees this therapy is right for you.

Avapro is anecdotally effective at reducing symptomatic sensitivity to 1,25-D, and has also been conclusively proven effective at reducing nephropathy (kidney damage) and retinopathy caused by the vascular damage of diabetes. Sarcoidosis produces similar vascular damage, and I adjudge that Avapro would have similar renoprotective effects in Sarc. Avapro is not the most effective ARB (Benicar is), but it does work. I know of sarc patients who are taking it at dosages ranging from 150 mg every 12 hours to 150 mg every 8 hours. It does have the side-effect of reducing your blood pressure, systolic and diastolic, by about 20-30 mm Hg, so Doc will probably want to monitor BP pretty closely for a while.

If you have been on prednisone for a while, and are concerned about osteoporosis, I would talk with Doc about starting a Calcium supplement. Make sure it does not have D in it, you already have enough of that...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Betty Campbell (---.81.220.203.acc05-dryb-mel.comindico.com)
Date:   10-24-02 17:26

Trevor,

Many thanks for your prompt reply. I see the local doc this afternoon.

Yes, I certainly must have pre-disposition for sarc. Six months before I was diagnosed, my son, then aged 45 (and diag. diabetic at age 40),was diag. with Sarcoidosis via lymph node biopsy just below neckline. So when I was diag. the word was not new to me. As I had been exceptionally breathless and fatigued 6 months before my diagnosis, I could well take myself back to somewhere near the time my son was diagnosed. He started on high Pred dose for very short time and off it in very short time owing to the diabetes conflict, and all over the sarc in about one year. Back to running round the city "tan" before work each morning, etc. I seldom mention my sarc to him, as I want him to forget all about it and continue on his seemingly happy life as is He is on insulin and tablets.

We are both of the same blood group, and both had the injections for allergy, approx 20 years ago. The diabetes was a surprise, and we trace it back to my husband's side of the family. My blood sugar reading has never been above 4.9 and often lower. I have been told I would never be diabetic! My other son, different blood group, a few years ago had a large cyst removed from just above the parotid gland, but it was benign and no mention of sarc or anything else.

I was on Prednisolone non stop for at least 3 1/2yrs, but when blood taken the dose only about 1mg alt. days. My ACE was only 52 when first diagnosed. I have had 2 DEXAs during past 4 years, and am in constant touch with orthop. surgeon, having had 6 knee arthroscopies since 1986 and weak lower back. Altho some osteoporosis there, apparently nothing to put me in a worse bracket. Orth.surgeon says to take calcium and now you have mentioned that I can get it without Vit. D. will certainly go ahead with it.
You are such a great guiding light, Trevor..many thanks again.
Betty
 
 Re: My Vitamin D and ACE test results are back!
Author: Ed Phillips (---.juneau.ak.net)
Date:   10-29-02 05:03

Hi Trevor -

I would like to start by thanking you for the invaluable help that you provide to all of us affected by Sarcoid. In fact if I could, I would nominate you for a Nobel Peace award as your efforts are bringing significant peace to all of us affected by what amounts to a terrible yet invisible war that has undoubtedly diminished all of our lives and self esteem. You and this "phorum" are like a beacon that brings new hope and understanding.

I have been feeling much better, as I always have in the fall of each year, in fact I wouldn't have even gone to the Doctor, but I wanted to have the tests you recommended. The results are:

ACE -- 36 U/L ( I take 20 mg of Lisinopril per day if it matters)
Vitamin D, 1,25 Dihydroxy -- 76.6H pg/ml (Lab BN Labcorp Burlington
Vitamin D, 2-Hydroxy -- 18.3 ng/ml

I could not get my Doctor to give me the Minocin and Benicar, as he does not really understand Sarcoid as have the last 50 Doctors for that matter. He referred me to a pumonologist who is coming to town tommorow. I was wondering if you could write me something that could interpret my result so that this Doctor will give me the medicine. I have been telling my Doctors for the last 20 years that I have to have an Antibiotic in the spring and fall of every year for 26 years. And yes, I have had confirmed Lung Sarcoid for 10 years, and lesions in my brain amid other anomalies. I also had a tick bite me in my ear for at least 3 days 30 years ago. I have also been told I am a world class Hypochondriac and "begging" for medical tests for attention.

Also, I have been consistently told my white Blood cell count is low -- 3.3 L and they ruled out the main causes. I was wondering if those are used by the lungs to make all of the Phlegm that my lungs constantly produce and I clear my throat and swallow. This constant clearing is very disturbing to me, but I believe I would surely drowned if I stopped clearing it, even for a day. It is surely worse than ever, but been there as long as I can remember.

Anyway, I sincerely meant what I said. You are a lifesaver and a major hero in my world - and I thank you from the bottom of my heart. -- Ed
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-29-02 11:39

Ed,
The ACE inhibitor (Lisinopril) will depress your ACE reading and make it a poor indicator of Sarc inflammation.

Luckily your D metabolites have come to the rescue, and shown that most of your 1,25-D is being manufactured outside of your kidneys, in the inflamed tissue, and that the inflammation is widespread.

At 76.6 pg/ml your 1,25-D is well above the Merck maximum of 45. But your 25-D, at 18.3, is close to 'sarc normal', yielding a D-Ratio of 4.18, which is high, indicating significant inflammation.
Your 1,25-D is 5.0 sigma above normal. 99.99% of the population would have 1,25-D values lower than yours.

Forget about the pulmonologist. You need to track down a caring primary caregiver that will prescribe you Minocin ASAP. Your sarcoid inflammation needs to be knocked down, and you need to be trying the relatively safe antibiotics which may do just that. Armed with the Johns Hopkins paper and the French paper you should be able to find a local M.D. or D.O. who is willing to look after you.

The concerns about WBC, etc, seem futile when compared to the need to reduce your 1,25-D levels and put the kidneys back in control of your calcium metabolism. The phlegm, similarly, is a secondary effect, IMO. Focus on instituting a program of antibiotic therapy before you get sidetracked onto secondary issues.

Feel free to tell your Doctors that they can call me to discuss any of the issues.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Betty Campbell (---.80.220.203.acc05-dryb-mel.comindico.com.)
Date:   11-08-02 21:45

Trevor,

My understanding local doc says he is being careful, by prescribing 75mg Avapro daily, for two weeks, to see how I handle it. Nearing time for me to go back to him, and I have found out from chemist that Minocin (Lederle brand) will not be a problem.
The 2 wks on 75mg has not been any problem. Is it o.k to up the dose soon?

Another query---my dermatologist arranged for me to have a skin sensitivity test at the DERM-PHOTOBIOLOGY clinic at St. Vincent's Hosp. last September. (because of spots on my face) I heard nothing about it until 2wks ago.. Blood tests for ANA, ENA and CK. I wont get any results for sometime as no immediate appt with dermo.doc. However, I found out name of most things, whilst undergoing this testing, over 3 appointment times.. After 26 circles drawn on my back, using something like gentian violet, and then sitting in front of a machine known as MONOCROMATOR, (was told it was the only one in Australia)--then to another room to lie on tummy and have back packed with towells, and then the use of a SOLAR SIMULATOR.. Back home and told not to shower for showing up again next day. I wrote down the result I was told...i.e. Polymorphisis light eruption. I could have told them I was sensitive to sun. !!
I came through all this o.k, (except for the resultant fatigue bout), but I can't help wondering if these machines add to the D3 problem of being in the sun.
Thanks again, Trevor,

Betty
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-08-02 22:02

Betty,
Oh dear. You would think these dermatologists would know what they were doing, wouldn't you. Slow learners, I guess Yes, as you so rightly guessed, any exposure of the skin to UV or Bright Light or Sunlight is much the same - it will increase the levels of 1,25-D in your system (hence the fatigue) and this will often also cause eruptions. I will email you a copy of our complex 'doctors paper' so you can send it to them with a covering note about Guy Scadding having noticed D sensitivities in 1949

Never had any luck with allergists myself, I always came up with a wheal whatever they injected me with. I guess I was allergic to the stuff they mixed the allergen with

I found that Avapro started to be fairly good at blocking the 1,25-D symptoms from about 150mg every 12 hours and worked best at 150mg every 8 hours. Get Doc to look at the graph in the paper I will send so that he will understand why the smaller doses are more trouble than they are worth. The blood pressure effect comes at low dosages, and by the time you get to 150mg qd there really is not much more reduction in BP as you increase the angiotensin blockade to where it actually can affect the inflammation. Only problem with Avapro is getting them to dissolve when you are already a little ill. They use the P450 chemistry to get absorbed from your GI tract, and that P450 chemistry is upset by high 1,25-D. A large hot cup of tea will help get them absorbed. Benicar is a much better ARB, if you live in the US or Japan (and can therefore buy it).

Start on the Minocin as soon as you can. If there are bacteria which are susceptible to the Minocin you will notice a difference in fatigue (etc.) straight away, and the skin should start to clear over about 8 weeks or so.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Sylvia (---.proxy.aol.com)
Date:   11-09-02 18:37

Trevor, I found this site about 2 weeks ago after accidently deleting your e-mail several months ago. My husband's test results are back and I'd appreciate your opinion.

1,25D=69
25D =30.4
ACE =0

I've spent hours reading through this phorum and reading your papers. I know his ratio (2.26) is too high. The following facts are probably important too. My husband has (most recently) been on prednisone for 2.5 years. Over the last 6 months the average dose would be about 10mg/day. The rheumatogist also has him on Cellcept (11 months now) in addition to the Prednisone.

He took a calcuim supl with D for about 2 months this fall. He also has been having (for about 8 months) a small protein shake in the am which also is fortified. He stopped both 3 days before the blood work was done.

These tests are fasting as our lab said the ACE had to be done fasting.

He has diabetes, osteoporsis, and hypertension secondary from the prednisone. Besides for Avapro, Clonidine, and Lazix, he is now on 40mg/day of Lotension-an ACE inhibitor.

He's on lots of other meds too and is usually pretty sick. He has just been diagnosed with Avascular Necrosis in his right hip, which at least explains his months of pain but now he is dealing with the idea of a hip replacement.

We'll be looking at how to protect his eyes and redoing his labs in a month or 2. Your help is appreciated. Thanks.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-09-02 21:32

Linda,
Clearly you needed help some time ago. 50mg of prednisone is quite a high dose, and it will be hard to wean from it overnight. It will also reduce the effectiveness of the low-dose Minocin (Minomycin) or Doxycycline antibiotic therapy, which, IMO, should be your first line of attack based on risk/reward ratio.

Talk with Doc about starting the antibiotic. Your fluctuating 1,25-D levels do make your glycemia harder to control. But, so far, we have little evidence that the antibiotic will help you stabilize your blood glucose. One other patient was possibly helped - and I am not sure if the stabilization was not due to other drugs that were being adjusted at the same time.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-09-02 22:09

Sylivia,
The 1,25-D at 69 pg/ml is very high, 4.2 standard deviations high, 99.9% of the population have values lower than that. If it were not for the prednisone it would be higher still. Prednisone typically depresses 1,25-D by 25% to 40%

The 25-D is also high. A more normal value for sarc patients is in the 12 ng/ml region. The effects of the calcium supplement would still be lingering when the tests were taken, and I have to assume that is the problem. But please check everything else he is ingesting, including herbal medicines, for added Vitamin D. Every decrement you can get in 25-D will decrease the 1,25-D levels.

Two months is about the minimum useful interval for taking 25-D data.

A high level of 1,25-D will cause bone resorption and therefore osteoporosis quite seperate and in addition to the effects of the prednisone.

Surges in 1,25-D also affect the glycemic regulation.

I know I am beginning to sound like a broken record but I would recommend talking with Doc about a course of low-dose Minocin - I am preparing a paper that you will be able to print (in a few days) with my latest ideas on dosages, etc.

The eyes are important, especially to the "neuro" symptoms. It is so much easier to put up with pain and focus on the future when you have your brain back

The ACE is probably low because of the ACE inhibitor Lisinopril. I would look at phasing in Benicar 40mg every 8 hours instead of the Avapro and then reducing the Clonidine, and later the Losinopril, if the blood pressure declines too much. In any case, the Clonidine is reported to have reduced effect in long-term usage and Doc probably is wanting to phase it out. I will email you a paper for Doc to look at which discusses how the ARBs act on 1,25-D and it has a graph of presssor function vs dosage for Benicar.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Sylvia (---.proxy.aol.com)
Date:   11-10-02 08:32

Thanks Trevor for responding.

My husband wants you to know that he is half Swedish and his mother was a red head. He isn't, but his skin is very fair. He has had headaches his whole life and says that he probably ruined every vacation his family took when he was a kid because he was aways sick. Many of those vacations were to the beach!

He also wants you to know that he was drinking a LOT of milk until 2 weeks ago. I've looked at everything that he is taking over the last 2 weeks and haven't found any other souces of D. He is taking Flaxseed Oil (Solgar), Fish Oil (Costco), Vit E (Costco) and COQ10 (Swansons). I didn't mention his hyperlipidmia in the last message and his inability to take those wonder drugs!

The doc is leary. She humored us with the lab work. She called to say levels were normal even tho we had given her a copy of your paper. It was a little difficult getting the actual report but she did release it. Your right about the Clonidine. She has mentioned getting him off of it (another doc that he doesn't see any more originally prescibed it) but his BP has been out of control for months. So she has kept him on it and upped the Lotensin until the BP was normal.

My husband also sees a D.O. who might work better with us. We will also talk with the rheumatologist but he is 1.5 hours away. He use to do some research with Dr. Sharma years ago and I don't know what his response will be to any of this. He has upped my husband's Prednisone twice in the last 4 months. My husband is trying to wean off (again) and at 7.5mg/day right now.

We don't know how this hip replacement is going to effect everything! It has been one health problem after another for almost 4 years. It is hard to get our hopes up that a simple thing like Vit D will turn this nightmare around. And being true Americans, we want it fixed NOW! Patience is definitely a virtue.

Thanks again. Sylvia
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-10-02 08:51

Sylvia,
I would be very leery of the Costco Fish Oil.
I know it doesn't have Vit D on the label, but the Govt Regulations don't require Vit D to be labelled unless it is added. Vit D occurs in quite large concentrations in Fish oil. The same comments apply to CoQ10, but in that case I suggest you contact the manufacturer, as it may have had the Vit D purified out. Or it may not

Click here for a copy of the FDA Labelling regulations. Note the phrase "If a claim is made about any of the optional {vitamin} components, or if a food is fortified or enriched with any of them, nutrition information for these components becomes mandatory" Otherwise it is apparently not mandatory to tell you they have Vit D in them

IMO, the BP will not get in control until the 1,25-D stabilizes. Same for glycemic control, it also is modulated by 1,25-D. And 1,25-D fluctuates with a 6-hour half-life

..Trevor..
ps: Print the MERCK page for Doc with the 45 value on it for max 1,25-D
She will pay attention to that.
But, then again, maybe the DO will work with you better.
 
 Re: My Vitamin D and ACE test results are back!
Author: Sylvia (---.proxy.aol.com)
Date:   11-16-02 12:07

Hi Trevor, it is amazing how much Vit D we are ingesting. Our Trader Joes (3.5 hours away) do not carry a milk without added D. We were able to find 3 different brands of Soy Milk w/o D but nothing else. And we did find a protein powder w/o D added! I am still looking for a supplier of good ole milk. Use to live in a community with several locals milking cows. Thinking of putting an ad in the paper!

Called two different health supplement companies to talk to their nutritionist about Fish Oil. Both insisted the natural occuring D would be nothing--micrograms. Both stated the high D is in the 'liver' oils and their Fish Oil is from other parts (bi-products)of the fish. So for now he wants to continue on the Fish Oil.

He saw his rheumy doc the other day. He was willing to try the Minocin but not so close to surgery. So that is on hold. Haven't seen the gp yet about switching BP meds.

Glad fall is upon us with a little less sun! Thanks for all. s.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-16-02 13:14

Sylvia,
Your fish-oil supplier is playing games with you.

5 micrograms of Vitamin D (ergocalciferol) supplies the 200 IU Recommended Daily Intake (RDI) for an Adult. So your fish-oil supplier was being deceptive (IMO) by saying "it only has micrograms in it". Of course it only has micrograms. It is still toxic.

Stop using any Fish oils or fish extract.
At least until you get control of your sarcoid inflammation.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Caroline (---.win.org)
Date:   11-25-02 16:32

Hello Trevor,

I finally received my blood work results today. I did not receive both D levels as I had requested. My ACE continues to be very low at 21 u/l (range of 9 to 67). 1, 25 dihydroxy D is 58 pg/ml (range 15 to 60). This is up from last time. I have eliminated D from my diet completely as far as I can tell and live in a darkened house. It must be securely stored in my 65lb. 'weight' gain (phat) from pred.

I am not currently on pred. but am taking 17.5 MTX a week. I am slowly loosing ground in mobility and iritis/uveitis is in it's second flare.

The doctor hunt will have to start after Thanksgiving week.

Thank you, Caroline

ps. my hepatic panel is low on globulin and high in albumin/globulin ratio, would you know what that means? I know that must be from MTX but I am having difficulty finding any info on the web.
 
 Re: My Vitamin D and ACE test results are back!
Author: Jane (---.ap.plala.or.jp)
Date:   12-07-02 11:02

Trevor

I have been very interested and encouraged reading "Remission in Sarcoidosis" and the advice and support you have been offering through this website. I do have a small concern however about your reliance on serum ACE levels in evaluating the extent of Sarcoid inflammation. In particular, I refer to the second to last paragraph of "Interpreting the Patient's D Ratio Data" in Remission in Sarcoidosis in which you state "Patient B had an ACE value which was low-to-normal, regardless of ACE genotype and a ratio of 1.29, which also indicated minimal inflammation." The inference that an ACE value of 22 is indicitive of minimal inflammation could, I believe, be misleading as it is not uncommon for people presenting with acute clinical symptoms to have normal ACE values. In some patients, elevated serum Soluble Interleukin-2 receptor (SIL2R) levels may be more indicative of sarcoid inflammation and the disease stage. An interesting correlation found between SIL2R levels and M. Tuberculosis positive patients, is discussed in "Detection of M. Tuberculosis DNA in Sarcoidosis:Correlation with T-cell response" Laboratory Investigation July 1999:Vol79;No7". If this correlation is to be believed, SIL2R ought to be indicative of inflammation and disease state in around 60% of sarcoid sufferers. For this reason, I am not sure whether the inferences that you purport to draw from ACE levels are necessarily valid and wonder whether they might be better included without comment.

Since I do not recall seeing anybody mention the SIL2R test on this site I am curious as to whether this very helpful test is used elsewhere.

I very much appreciate all the time and effort you and others have been putting into this site Trevor and look forward to your response.

Jane T.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-07-02 11:54

Jane,
Taken in isolation, serum ACE is not a good measure of inflammation. You will note that I used serum ACE only in conjunction with a 'normal' D-Ratio in making an assessment that this patient was not having a problem with aggressive inflammation.

With that having been said, if you look at the German study which I link from the thread on ACE measurement you will see that a value of 22 is well below the mean regardless of genotype. There are drugs which are known to depress the serum ACE assay, most commonly Prednisone and ACEI, but neither was being used by Patient B who was on MTX, celebrex, celexa, baclofen, 81mg aspirin, HRT, and zantac

This patient had a 1,25-D value of 54 pg/ml, well above the upper limit in Merck (45), and above the limit (42) frequently used in other studies as indicative of hypercalcemic risk. She was experiencing symptoms typical of Hypervitaminosis D. In this case, however, the serum 25-D was also very high, 42 ng/ml, most probably reflecting calciferol supplementation for osteoporosis that had only recently been discontinued Her D-ratio was normal (1.28)

There really is no study that has determined a 'safe' level for 1,25-D in Sarcoidosis, even though the anomalous elevation in concentrations of this hormone have been known for over a decade. I have found from my own experience, and from others who are experiencing varying degrees of remission, that a target value seems to be between 20-25 pg/ml, between 0 and 1 sigma below the population mean.

I have not paid a lot of attention to SIL2R because this cytokine is "downstream" from NuclearFactor-kappaB in the inflammatory response. My primary interests is endocrinology, and I generally prefer the higher level instigators, the hormones, (including 1,25-dihydroxyvitamin-D and Angiotensin II), to the cytokines produced by the action of those hormones. 1,25-D and Angiotensin-II induce NuclearFactor-kappaB to signal the cascade of Th1 Cytokines, including IL-2. The interleukin itself does not determine the manner or timing of its own release (click here to read more about NF-kappaB and IL-2)

I don't know how hard it is to perform 1,25-D testing in Japan, but I would urge you to start measuring the D-Ratio for your patients and correlating it with the SIL2R values you have. Here in the USA, blood for 1,25-D assays can be drawn at any doctor's office, and the assay is requested alongside all the other bloodwork being done.

Although I only have a 'gut feeling' (and not yet a definitive study) to make the statement, it is clear to me that the D-ratio reflects the extra-renal generation of 1,25-D. This is known to occur primarily in the granulomatous inflammation and/or keratinocytes. I have watched the D-Ratio fall as antibiotic therapy has been progressively suppressing the inflammation. It is an excellent measure and I commend it to you. I will also email you a copy of our latest paper that goes into these issues in more detail than the 'remission' paper.

Welcome to SarcInfo, Jane.

..Trevor..
ps: if you have some SIL2R values and some case histories that you could share with us I, for one, would be extremely interested.
 
 Re: My Vitamin D and ACE test results are back!
Author: Jane (---.ap.plala.or.jp)
Date:   12-13-02 23:51

Trevor

Thank you very much for sending your paper. I found it very informative and forwarded a copy to my attending neurologist who has ordered a 1,25-dihydroxyvitamin D test for me. He was unable to order a 25 hydroxyvitamin D assay and will try and arrange this through one of the authors of the paper "In vitro formation of macrophage-epitheloid cells...by 1 alpha, 25 dihydroxyvitamin D"referred to in your paper.

Thank you also for drawing my attention to the significance of ACE genotype in interpreting ACE levels. Serum ACE is generally assayed in Japan by the "Kasahara" method (my translation) and the "normal" reference range is 7.0 - 25.0 U/l. I have been unable to ascertain whether this range is corrected for the ACE gene polymorphism though I imagine that it is not.

Soluble Interleukin-2 Receptor (sIL2R) values are not routinely tested in Sarcoidosis in Japan as the expense is not covered by the state funded "chronic disease insurance" system. Assays are however sought from time to time for research purposes. I have seen references to sIL2R values in several German and Scandinavian studies so there may be European contributors to this page who are able to supply such values for comparison. In my case it has provided a very reliable marker in the absence of ACE genotyping which is not generally available. I would be very happy to send you my own ACE, sIL2R and Vitamin D values once the most recent results are to hand. I can also supply a case history if you could give me an idea as to the scope of and format in which you would like to receive the information.

Right now and rather to confound things, I am faced with an interesting conundrum that I would be interested to receive your views on in the new year. Unfortunately it is necessary to wade through my case history to understand the issue as follows:

I have a 10 year history of chronic systemic sarcoidosis, diagnosed via a cervical lymph node and confirmed by transbronchial biopsies in 1996. At that time my sACE was described as being within "normal "range at 19U/l. My primary symptoms consisted of chronic fatigue, abdominal pain, annorexia, headaches, dizziness and shortness of breath upon exertion. I declined steroid treatment. Thereafter, although my chest x-rays slowly worsened, my pulmonary symptoms remained stable. I began increasingly to experience increasing motor, vestibular and other neurological problems on a relapsing, remitting basis. A cranial MRI proved clear however and [my] pulmonary physician declined to investigate these further. I collapsed one morning in November 1999 and was admitted to a neuro-surgical ward. Despite clear MRIs and normal CSF values my loss of sensorimotor function was judged to be consistent with a spinal cord lesion in the vicinity of C6. My ACE at this point was little changed at 22.6 U/l despite my critical condition. As I had two infant children who I was increasingly unable to care for, I reluctantly agreed to undergo corticosteroid therapy commencing at 20mg/day. This steroid dosage was subsequently increased to 50mg/day for a short period after which I experienced a rapid and complete remission of my pulmonary syptoms and substantial improvement in my neurological symptoms other than the chronic fatigue which continued unremittingly. Following the institution of steroid therapy, my ACE dropped to 6U/l (values for other markers not to hand). Thereafter I remained on the steroid band wagon until February 2002, when, in addition to motor problems I began suffering symptoms consistent with aseptic meningitis. At my insistence, the Prednisone tapering regime (at that point 10mg/day) was continued despite the appearance of these new and very troubling symptoms. Then in March, I was given a course of Clarithromycin for an opportune infection after which I began to feel better and more surprisingly, the chronic fatigue that had dogged me relentlessly for 10 years gradually dissipated. My motor and other neurological symptoms also began to improve. By August this year I was mobile enough to be able to play hockey with my children and came back from a trip to New Zealand feeling as if I had never been unwell. I reduced my Prednisone dosage to 5 mg every other day for a month, with no ill effects and then stopped taking steroids altogether. The typical withdrawal symptoms such as muscular pain aside, I noted no change for about 10 days after which I experienced a minor return of muscular fatigue and spasticity but no systemic fatigue. Reversion to 5mg/qod relieved these symptoms so they were attributed to adrenal insufficiency and a longer withdrawal regimen suggested to which I was amenable. Considering myself to be in remission and feeling encouraged by your research paper, I consulted my neurologist this week about the possibility of Minocyline and ARB therapy as a fallback should my symptoms return following steroid withdrawal. In passing, I enquired about my most recent ACE result and discovered that, almost as if in inverse proportion to the symptomatic manifestations of my illness, my ACE level has been rising steadily all year and now, at 26.8 U/l is at its highest level ever. Nothing is but what is not!

I await the result of my 1,25 hydroxyvitamin D test with considerable interest and look forward to corresponding after the holiday break.

Best wishes to all for much good health and continued enlightenment!

Jane T.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-14-02 06:53

Jane,
Clarithromycin is an antibiotic which is mostly used against strep infections, but it is also effective against a number of other pathogens, particularly Mycobacterium Avium, one of the TB-like bacteria the Vanderbilt study found in tissue from Sarc Patients.

There are many microbes that can cause Sarc inflammation, and, in your case, Minocin may be less effective at combatting the ones that infected your body than Clarithromycin. You would have to try it and see.

On the other hand, the cell-dwelling microbes are difficult to eradicate, and you should be aware that some might well have escaped the initial Clarithromycin antibiotic treatment. The prescribing instructions say "Clarithromycin therapy should continue for life if clinical and mycobacterial improvements are observed" but I disagree strongly with this wording, and feel that "occasional top-ups" should be all that is necessary.

If you could monitor the D-Ratio it would tell you how much of the 1,25-D is being generated in systemic inflammation. If it were to rise again then this would be an indication that you needed additional antibiotic therapy. In your case you will have to observe your symptoms. I suspect that your need for more prednisone might well indicate that there still might be bacterial activity to be knocked down.

Yours is a fascinating story because it is so well documented. You, and your attending physicians, have handled your treatment well.

As for your ACE, it is normal for Prednisone treatment to temporarily depress the levels of serum ACE as it suppresses NuclearFactor-kappaB and the cytokines that NF-kB signals (incl. IL-2). This inflammation comes back, often with greater severity, when prednisone is discontinued. So the change in the values you have given for serum ACE seems reasonable enough to me, even though the absolute readings seem low. It would seem that there is still some systemic inflammation driving the ACE higher as the prednisone is reduced. Nevertheless, 26.8 IU/L, measured in a US Lab, would be a low value for serum ACE. Normal here is "14-70 Units", and I have been unable to find any mention of conversion factors between Japanese labs and US labs.

I hope you have time to monitor the forums and comment from time-to-time, as you have insights into the disease and remission process, particularly the manner in which the symptoms change, that will be a lot of help to other SarcInfo folks. Good luck with the antibiotics.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Dorothy S (---.roadrunner.nf.net)
Date:   12-18-02 16:48

Trevor and All:

UPDATE ON TREATMENT

After one month of Minocin and Mircadis my doctor sent me for more blood work.

Tests

1,25D - was 114 now is 51

25D - was 49 now is 21 nmol/l = 8.4 ng/ml

ESR - is 54 - normal is 0 - 20. This test was not given on my first report.

ACE - This time it was calculated differently and I am not sure what it means in relation to my first test.

ACE - was 1521 nmol/L normal is 0 - 670 nmol/L
ACE - now 210 U/L normal between 12 - 65 U/L

My doctor was impressed at the improvements in the numbers from my previous tests. She now sees that the information you provided and the tests that you recommended are valid.

When she checked my lungs she said my lungs now sound clearer than the last time and there is no wheezing.

Since starting the treatment here are the improvements I have noticed so far:

1) My breathing has improved
2) My wheezing has improved about 90%
3) I don't need to nap in the afternoon I am not as tired
4) The spots on my face and body have flattened (Dermatoligst gave me injections)

I still have joint pain from the hips to the shoulders and muscle pain in my biceps. I am beginning to wonder if this pain will ever go away. I was taking Celebrex for the pain but had to stop because I was breaking out in hives everyday and my doctor felt it was a reaction to the sulpher in the Celebrex. She has now given me Vioxx to try, it is suppose to be similiar to Celebrex but doesn't have any sulpher.

A couple of weeks after starting the Minocin, I was checking the phorum and came across a picture and description of Minocin. I checked mine and discovered that I had powder in my capsules and not the granular form. I checked with my pharmacist and they told me what I had was pure Minocin and didn't know if the granular type was available in Canada. She was able to get the correct type and for the past 2 weeks I have been on the one you recommended.

After about 3 tablets, my ankle got inflamed and I couldn't walk on it. The same thing happened when I first started the Minocin. I am guessing this was a second Herxheimer Flare. Both times it lasted about 3 days and completely disappeared.

The end of January I have an appointmant with a new Pulmologist recommended by my first Pulmologist as he didn't want to treat me when I refused to take Prednisone. He wanted me to get a second opinion... Guess I will have to educate this one! While I am there I am going to ask for another chest scan to see if there is any improvement in my lungs.

I would like to hear from others who have started the treatment to find out if they are progressing as well as I am.

This treatment really works!!!

Thanks,

Dorothy S.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-18-02 20:25

Dot,
Even allowing for the rather uncertain reliability of the lab doing your ACE values ( ) 210 U/L does seem very high. Your D-Ratio, at 6.0, is also still high, and the two toegther indicate (to me) that you are fighting significant systemic inflammation.

The job of the antibiotic is to lower the D-ratio (reduce the amount of inflammation). Minocin really doesn't seem to be doing this because your D-Ratio is remaining constant. You will probably have to change to or add some other suitable antibiotic in a week or two. There is a limit to the amount you can reduce your 25-D, after a while you end up staying totally indoors and avoiding all questionable food in order to keep the 25-D dropping, and it gets very hard below 8 ng/ml

However, lowering your 25-D has done two things. It has allowed you to see that the 1,25-D was in fact causing you a lot of distress, and it has reduced that distress significantly.

Let's keep in touch by email. Jane has suggested a different antibiotic which seems promising. Your doctor will almost certainly feel comfortable with it, maybe it will do the trick. Let's wait another week or two before crossing that bridge.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Caroline (---.win.org)
Date:   12-28-02 10:26

Hi Trevor and Everyone,

Hope it was a Merry Christmas and that New Year will bring good to all!

I just received my D results drawn on Dec 19th. My 1,25 D is down to 37 with a range of 15 to 60 PG/ML. 25 D is 22, NG/ML. I am happy to see that they are moving in the right direction--down. Trevor, how am I doing? I am not taking prednisone.

My doc sent me to have another TSH draw because it is low at 0.32 in a range of 0.42 to 5.50 MIU. I am unfamiliar with thyroid problems but I hope a problem is not found.

Happy New Years!
Caroline
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-28-02 11:35

Caroline,
Your 25-D fell from 42 to 22 in 4 months. That's a good sign. In another 4 months you should have exhausted most of your fat storage from the D supplementation they gave you.

Your 1,25-D fell from 54 (v. high) to 37 (closer to normal) and your D ratio stayed pretty stable, going from 1.2 to 1.7

It seems usual for the D-ratio to jump about a bit. Part of this is the fact that 1,25-D changes so rapidly in serum (half life 4-6 hours), and the value that is measured depends so much on the measuring conditions (time of day, etc).

I am happier with a 1.7 ratio, because it indicates that there is still some active inflammation to knock down. You have already figured that out from your symptoms, and now the data is starting to support your feelings. that is a good thing.

There is a thread on Thyroid issues. It is not a good idea to supplement or otherwise treat thyroid problems until you know for sure they are not related to the underlying inflammation, and that they REQUIRE treatment. I would expect to see quite a few changes as the 1,25-D falls and your kidneys take back partial regulation of PTH and the other thyroid hormones.

That is good news for the holidays - let's hope the numbness caused by the Methotrexate starts to dissipate soon

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Margo (---.adsl.duke.edu)
Date:   01-02-03 00:20

Dear Trevor,
We got the results on the Vitamin D tests for my daughter (age 11):

Vitamin D,25 hydroxy serum: 15 ng/mL

---Expected values---
Not established (0-15 y)
8-38 (>=16 y)
Normal values were determined
in the wintertime in Rochester, MN.
Normal patients who have increased
exposure to sunlight may have
values above thisnormal range.


Vitamin D 1,25 dihydroxy, serum: 70 pg/mL

---Expected values---
Not established (0-15 y)
22-67 (>=16 y)
Normal values were determined
in the wintertime in Rochester, MN.
Normal patients who have increased
exposure to sunlight may have
values above this normal range.


The ratio of Vitamin D 1.25 to Vitamin D, 25 is 70/15 or 4.6.

Also, the alkaline phosphatase was 533 U/L with a reference of 30-330.

The pediatrician wouldn't order a test for the ACE as she didn't know why it would be significant in sarcoid! (I have since forwarded an article to her about elevated ACE in sarcoid.) My daughter's ACE hasn't been measured since June, when it was 158.

Apparently none of the doctors are aware of the significance of different alleles of ACE. (Thanks to this site, though, I do.)

We are working on the doctors to prescribe ARBs and antibiotics.

Happy New Year! And, thanks for the article.

Margo
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-02-03 01:43

Margo,
Well I guess it is good news and bad news.
The good news is that you now know the problem, the bad news is that her kidneys are clearly not in control of the conversion of 25-D into 1,25-D, and that there seems to be energetic conversion in systemic inflammation. A high level of inflammation is confirmed by the high serum ACE value.

The other piece of good news is that her 25-D might be able to be lowered a little more, which would bring down the 1,25-D a little.

But clearly the inflammation has to be addressed, and I would suspect that when you find antibiotics that attack the bugs from which she is suffering then she will have significant herxheimer. Herxheimer severity seems to be associated with high initial levels of 1,25-D

Because of your daughter's age, however, she has probably not been exposed to the huge number of microbe species that most adults have, and it is possible that PCR testing for the most likely bugs might be some help in tracking down the culprit and finding out what antibiotics it might be susceptible to.

You might consider an Internal Medicine specialist to help your pediatrician with the management of your daughter. An IM should immediately recognise the elevated Alkaline Phosphatase as needing attention, even if he/she didn't fully understand the rest of the issues. Interview a few. They will be uncomfortable with her age, but you should be able to find one who recognizes that his/her expertise is needed (try the ones with both MD and PhD qualifications first)

Finally, please let your daughter know that there are lots of us out here who have gone through what she is suffering, and have overcome the problems to live long and enjoyable lives. Please wish her Happy Holidays from me, Liz, and our own daughter, Karen.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Margo (---.adsl.duke.edu)
Date:   01-03-03 20:29

Dear Trevor,

Thanks for your response and your good wishes.

Fortunately, since cutting out dietary sources of vitamin D, my daughter has been feeling better, with more energy. It is wonderful to see her more like herself.

You mention that her 25-D might be able to be lowered a little more. We can try to cut out sunlight somewhat more; however, she always wears dark, tight-fitting sunglasses and a hat while she is outside. (She often wears sunglasses in the house, and the house is quite dark, as well.) Because she is exquisitely sensitive to the inflammation from her uveitis, her eyes are always dilated. The dilation helps keep the pain at a bearable level. Nevertheless, she may be taking in more sunlight than she should.

Are we missing any other way (besides medication) to lower the 25-D? (She consumes no dairy or eggs due to intolerances, no vitamin supplements, no soy milk or margarines with added vitamin D, no cereals with added vitamin D.)

In terms of PCR testing, we have the problem of no identified granulomas. One doctor is in favor of gallium scans, but the others don't think there would be much benefit. From things I've read here, I suspect that there may be a granuloma in her tear duct. (Her uveitis is the major symptom, along with fatigue and irritability.) If there is nothing we can find to biopsy, then PCR testing won't help.

The labs almost never indicate whether normal values in children are known. Does one assume that the normal ranges are for adults? Some values run higher in children.

Finally, has anyone had success with seeing one of the authors of papers on the bacterial connection to sarcoid? If we consulted with an out-of-town specialist, we could more easily get our local doctors to go along with the treatment.

Thanks again. Happy New Year!

Margo
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 03:13

Margo, it is great that your daughter is starting to feel better. It is truly amazing how much it helps to understand the cause of sarcoid inflammation when dealing with its consequences.

Firstly, PCR testing is done on a blood sample. Whereas normal bacterial tests require hundreds or even thousands of organisms in the blood, PCR can get by with as little as one DNA fragment. It is very, very, sensitive. Unfortunately each organism must be looked-for one-at-a-time, and so it is very expensive to test for the range of all possible organisms. You can read more about PCR testing from one lab that performs the tests. That is why I usually advise trying to kill the bugs off with antibiotics first. We have a good idea what the characteristics of the cell-dwelling microbes will be, and there are only a few antibiotics that are effective against those species. With your daughter, however, I suspect that most doctors are going to be very cautious about giving her what she needs, something to counter the Angiotensin II and the correct antibiotics to kill the bugs.

The damage within the eyes is usually caused by a form of vasculitis. Angiotensin II is released as part of the Sarcoid inflammatory cycle, and this causes the vasculitis that damages eyes, kidneys and liver. The ARBs have been proven to halt the progression of Diabetic Retinopathy and Diabetic Nephropathy, both caused by vasculitis very similar to that in Sarcodiosis. But you are really going to have to search for a courageous physician to prescribe ARBs for your daughter. The problem is not that ARBs are dangerous - they are not - the problem is that most doctors lack courage to stick their necks out even a little bit where kids are concerned. And your daughter is the first kid to have had Sarcoidosis confirmed (if that is the correct word) by tests of the D metabolites. Sometimes being at the bleeding edge is a lot of extra work.

There is no doubt in my mind that your daughter has Clinical Hypervitaminosis D. Her 1,25-D value read out-of-range for the lab, and is critically over Merck's value of 45 pg/ml. Any doctor that starts talking about "some values in children run higher" needs to be hung drawn and quartered, because some values run lower, too. There just is no data, and I would believe that the prudent path is to assume the adult data applies, keeping the possibility of deviations in your mind at all times. Your daughter's 1,25-D value and D-ratio are so deviant from normal that, IMO, there in no doubt as to the Hypervitaminosis D diagnosis.

The disputes will arise over exactly what this means, and what is causing it, and whether any treatment is necessary. I would be happy to take a phone call or email (or even FAX) from any of the Docs to discuss these issues in more depth.

As for finding one of the authors fingering a bacterial pathogenesis, IMO they are all being intimidated into silence right now. I have not had one pulmonologist, even the ones who published about bacteria, respond to my emails discussing possible therapies. It could take a decade before the profession allows Doctors to publicly talk about antibiotic therapy for Sarcodiosis. I have been getting hostility from World-leading pulmonologists, who should know better, about my publishing the biochemistry of sarcoidosis. The world's 'best' pulmonologists are saying that patients should suffer and wait while bacterial pathogenesis is proven beyond any doubt with a huge, lengthy, study before even discussing antibiotic therapy for sarcoidosis. I will guarantee that no prominent researcher or pulmonologist will want to get involved in your daughter's care. I could be wrong, however. Maybe I shouldn't be discouraging you from trying. You might place a phone call to Dr David Moller, at Johns Hopkins. Make sure he is receptive before spending any time on JH, however. His details are at URL
http://216.239.53.100/search?q=cache:Zv5hMl-MVoAC:www.hopkins-lungs.org/pul/jhu/about/faculty2.shtml

Finally, please look into the NoIR lenses and frames until your daughter gets everything under control. So many of the "dark glasses" provide little medical protection

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-04-03 06:50

Trevor,

Your respone to Margo prompts me to ask if you are keeping statistics on the cases you are advising via your website. I would be happy to provide you with hard copies of any pertinent data such as lab reports. Perhaps a compilation of success stories will convince a key expert in the field.

Meg
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 10:22

Meg,
Just a few weeks ago a top Sarc expert countered our 'success stories' with the phrase "spontaneous remissions occur in nearly two-thirds of patients with sarcoidosis" as he rejected our ideas as "of limited interest".

Luddites will be luddites, and it doesn't even seem that they notice success.

Thanks for your offer though, I will write to you if I need any more info.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: caroline (---.win.org)
Date:   01-04-03 11:57

Trevor,

The sarc 'experts' will soon be of little interest. That is when it is commom practice to be prescribed antibiotics and ARB's for sarc by our PCP's and the experts are dinosaurs. With the power of the internet, I don't think it will take 10 years.

It's very obvious by the growth of this forum in such a short time that the word is getting out. I occasionally check in on the forums I used to read and they have very little activity lately.

Caroline
 
 Re: My Vitamin D and ACE test results are back!
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-04-03 13:10

Trevor and Caroline,

What a sad commentary on our medical system. Of course, I shouldn't be surprised but I'm the optimistic type.

Won't that be an ego-deflator when the specialists lose business to the primary care providers? And like Caroline said, it will be patient-driven, thanks in large part to Trevor and this website. I check on the other sites too and when I can, try to direct people here. Sooner or later the docs will get tired of being pestered by persistent patients and give in to our demands. Then I suppose somehow they will take credit for it.

Meg

P.S. Trevor, I may not have a lot of systemic inflammation, but six hours after each dose of Minocin, I can feel those endotoxins doing their thing!
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 13:28

Meg,
Yes, I have noted what you and Betty have been saying about the herxheimer you have been getting. It seems as though a low D-Ratio does not always mean no infection...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Margo (---.adsl.duke.edu)
Date:   01-04-03 15:58

Trevor,

I will call about the NoIR glasses on Monday.

I didn't realize that PCR could be done on a blood sample. Maybe the doctors will agree to do some tests. My daughter may have had a mycobacterial infection about the time I had "walking pneumonia." (First my son had a terrible cough for two weeks, then got better. Next, my daughter had the same. Finally, I got the terrible cough, but I didn't get better in two weeks. When I saw the doctor, I was diagnosed with pneumonia. At the time, the children seemed perfectly well.) In addition, my daughter has been in places where there are many ticks, though we have never found a tick bite. (But one often doesn't.)

In your opinion, which organisms would it make the most sense to test for?

Thank you for your offer to talk with one of the doctors. In addition to the people we regularly see (pediatrician, opththalmologist, ped. rheumatologist), we are looking for someone new who will be willing to try ARBs and antibiotic therapy. I will follow up on your suggestion to look for an internist with both MD and PhD. I am also going to check out some of the "alternative"-type doctors, since they may be willing to be more independent.

I found on the web that Dr. Moller is involved in clinical trials of sarcoid, but he hasn't answered an email question about the trials. I will try calling directly.

This all gives us hope that a better answer is out there. I have been reading the many articles you (and others) at this site mention. The evidence seems pretty strong.

Margo
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 16:36

Margo,
I wish I knew what bugs to test for. I suspect that your doctor might have a talk with the testing labs and see what they normally check for in 11 year olds. If your daughter might have "caught" pneumonia from you then it would be best to see what bug they isolated from you at the time, and what antibiotics it was susceptible to. It could be tick borne, of course. Or a combination of the above.

Actually, I suggested to look for an Internal Medicine Specialist, not an Internist. Many of the IM Specialists are very knowledgable about endocrinology, pulmonology and nephrology.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Margo (---.adsl.duke.edu)
Date:   01-04-03 17:58

Trevor,

As it happens, when I had pneumonia, the "bug" was never tested for. (I think I "caught" it from my children, by the way.)

I will look for an Internal Medicine Specialist. Hope the adult specialists will be willing to see, or at least, consult on, a child.

Margo
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 18:31

Margo,
My IM specialist was prepraed to do PFT tests on my 10yo daughter, but he was as nervous as heck, and neither the spirometer's charts or his own charts went as low as he was measuring, he had to do some extrapolation.

11yo is getting reasonably advanced, you should be able to get the ARBs. Benicar and Diovan are not characterized under 18 yo, but Avapro says:

"The pharmacokinetics of irbesartan were studied in hypertensive children (age 6-12, n=9) and adolescents (age 13-16, n=12) following single and multiple daily doses of 2 mg/kg (maximum dose of 150 mg per day) for 4 weeks. Accumulation with repeated doses was limited (18%) in both age groups. Clearance rates, AUC values, and Cmax values were comparable to adults receiving 150 mg daily. Irbesartan pharmacokinetics have not been investigated in patients <6 years of age".

Irbesartan (Avapro) is the one proven to halt diabetic nephropathy (vasculitis), so, all in all, you may have to compromise to Avapro. Maybe the opthalmologist might be a help here?

Good luck, and call me if I can be a help,
..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Jane (---.ap.plala.or.jp)
Date:   01-05-03 07:54

Hi Margo

A thought on the PCR test. Given that the Myco Tuberculosis complex has been found in around 60% of the sarcoid tissue analysed in at least two studies (Vanderbilt and German study I sent a link for earlier), this may be one of the more obvious infectious agents to test for, particularly since you feel that the onset of your daughter's illness was preceded by pulmonary symptoms.

Having read the account of your daughter's illness has made me think that I ought to be more vigilant about my own daughter who was treated for suspected TB at the age of five, has mild chronic anemia, serum ALP values of between 673 and 774 IU/L, developed two salivary stones that had to be removed under anesthetic, is constantly irritable (herein I begin to meet my match) and suffers from a lassitude that I feel is uncharacteristic for a 9 year old. Now to find an endocrinologist who will listen ...

I feel greatly for you and hope that the treatments you are undertaking restore your daughter to the state of perfect health that all children deserve very soon.

Cheers from Tokyo

Jane
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-05-03 08:15

Jane and Margo,
The Vanderbilt study pointed out that numerous PCR studies looking for Sarcoidosis-linked Mycobacteria in the 1990s had failed to find it, because the PCR was trying to amplify the incorrect protein, the IS6110 of table II. Vanderbilt looked for different strands of the DNA, the 16S rRNA and rpoB strands. I had assumed that the PCR lab in the USA is unlikely to have the latest equipment and techniques, and would therefore come up with a false negative.

But look, Margo, it is all written out in that paragraph for you to FAX to the Lab when you check that they are looking for the correct RNA.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Margo (---.adsl.duke.edu)
Date:   01-06-03 14:23

Jane,
Your description of your daughter sounds familiar.
For years, we felt that there was something wrong with our daughter, but no one could find anything. The usual comment was "probably just a virus," but it's not normal to suffer from a virus most of the time! We had allergy testing, where we found numerous positives, but no explanation for the ongoing fatigue and abdominal symptoms. We also saw a gastroenterologist, who didn't find anything, but who at least paid attention. Not until she developed uveitis in both eyes was it apparent to the doctors that something more was going on.
I wonder if testing for 25-D and 1,25-D would be of value for your daughter. (Also ACE levels.) Maybe when you suggest that the auto-immune diseases can run in families, and you have sarcoid, the doctor will listen.

Trevor,
We are to see two specialists in a few weeks, so maybe one will listen! I am also looking for someone else, just in case.

Margo
 
 Re: My Vitamin D and ACE test results are back!
Author: Christian (---.ipt.aol.com)
Date:   01-14-03 08:24

Hi Trevor!

My test tesults are back. What do you think of that?

vit D : 67 nmol/L (was tested some time ago and got 37)
range winter:35-105 nmol/L
summer :35-150 nmol/L
1,25 Hydroxy : 144,0 pmol/L
range 38-133.0 pmol
ACE : 26 range 8-52 U/L
ANA : neg
Cholesterol: 5.65 normal 3.57-5.20 mmol/L
Triglycerides: 0.99 normal: 0.5-2-30 mmol/L
LDL Cholesterol 3.6 normal 2.00-3.4 mmol/L
Phosphatase Alkaline: 54 normal 35-115 U/L
WBC 4.6 normal 4.0-10.0X 10 e 9/L
SED rate: 1 normal 0-20 mm/hr

I have not been diagnosed with sarc but I have the feeling that this could be the culprit. My chest X rays were normal. After a BMD, they discover I have osteopenia. Three years ago I had a granuloma in one eye and few months after an episode of kidney stone. I have super fatigue all the time, joint pain, especially hips and lower back. Constant nausea combine with a wrenched stomach and sometimes a thightning of the thoat. I experience breathlessness daily and I'm exhausted under the slightess exertion. For a long time I had a metallic taste in the mouth. Almost constant chest pains that feel like my torso is in a vise. Concentration equal zero. Appetite almost gone. Sleep completely not refreshing at all. Feel sleepy all the time. Mostly constipated. Lately I had one eye filled with blood and it took 12 days to clear out. Now I have this intense itching on my eyelid that left me with a rash that's not clearing. Climbing stairs is like climbing the Everest. Some months ago, I was waking up with pins and needles in my hands. Recentely, I felt the skin on my nose was burning constantly. Can other ilnesses have a picture like the one I have with these test results? I see ! pneumologist, 2 endocrinologists next week and I wonder if I should investigate other ilnesses. Should they take a biopsy of my eyelid?

I have been told by some doctor that "everything was in my head", that I have panic attacks, generalized anxiety disorder, that I hyperventilate. I went to a psychiatrist and told me that as far as he was concerned, nothing was wrong with my head. The latest hypothesis is Chronic Fatigue Syndrome and I don't accept that diagnosis. I know inside of me that it"s not CFS and that I'm not crazy.

I'm sorry Trevor for the lenghty post but i needed to get that out. Thanks a million for your work and dedication.

Christian
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-14-03 09:17

Christian,
Your Alk. Phospatase is good (that's a liver enzyme).
It is normal for Cholesterol to be all messed up while your D is high. Here is a thread with info about that.

Your 1,25 level is equiv to 55.3 pg/ml, 25-D equiv 26.8 ng/ml
The D-Ratio of 2.1 indicates a reasonable amount of systemic inflammation for you to knock down.

You should also get considerable symptomatic relief by cutting down on your Vit D intake. 26.8 is quite a high 25-D for a D-Ratio of 2.1 Anyway, I am sure you know what to do in this direction. It's time to get out the magnifying glass at the grocery store

I am sure you looked at the BMJ paper. If you put your data onto those graphs you will see that you fit the D-metabolite pattern of Sarc patients very nicely.

Congratulations on getting it done. Was the assay hard to organize in Canada? Can you give us some tips?

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Christian (---.ipt.aol.com)
Date:   01-14-03 12:58

Thank you for responding so quickly and for your guidance.

The assay wasn't so hard to organize, but it just took me 2 years of suffering before thinking I might have sarc. I have done some research on the net, trying to figure out what was wrong with me. And then I found this amazing site of yours. I have seen many doctors here but no one could help me. Some only really poisoned me with medication. Anyways, after I found your site, I decided to have my D metabolites measured, because I needed the D ratio, as I only had before the vit D done. So, I printed all the good info I could gather here, plus the text you send me, and I wrote a letter to the endocrinologist, explaining my symptoms and the evolution of my sickness, and my family history (my mother and all her siblings suffer from arthritis and my grandmother had granulomas in her eyes) and gave him copies of my previous bloodworks showing anomalies (twice elevated blood calcium, high cholesterol, high uric acid, BMD showing osteopenia, high PTH once, low vit D and low blood cells), and I suggested if sarc could be the culprit and if so, could I be tested for Vit D, 1,25 dihydoxy, ACE, ANA, SED rate plus complete blood work. I drop the letter maybe 1 week before the appointment so the info could sink in and be digested. When I saw him one week after, it was clear to me that the only thing he read was the letter but he agreed for the testing. He said to me that it's not impossible that I might suffer from that, and added that sometimes that sickness is difficult to diagnose, but added that the ACE was elevated in only approximately of 60% of patients with sarc. So after saying that, he wrote a request for me for these tests and he refered me to another endocrinologist working at Hopital Sacré Coeur de Montréal for the follow up because it seems they have a department at this hospital which deals with sarc patients. So after that, I went to Laboratoire Médical Biron in Laval, suburb of Montreal. They have plenty of labs around the Province of Quebec (514)866-6146 or 1-866-923-9222 (not affiliated, yada yada...) They charged me 482$ canadian for

Complete profile
129$

ANA
56$

ACE
97$

Vit D
85$

Vit D 1,25 dihydroxy
115


I inquired if Americans traveling here could could have the tests performed but no one could answer me . I guess it would be a good deal. 200$ can is around 140 US. The only down side is both vit d take between 18 to 24 working days to get processed.



P.S: I know I seem to fit the pattern of sarc, but I just want to exclude any other kind of sickness. Anything else I should try to exclude? What should be my next steps?

P.P.S Exuse me again for the lengtt post and the quality of my english as it is not my mother tongue

PPPS: Does too much 1,25 D is only the result of to much macrophage activity? What is the target for that metabolite?
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-15-03 12:26

Christian,
1,25-D is converted from 25-D in the kidneys. It is also converted in the placenta during pregnancy and in the monocytes, macrophages and giant cells of Sarcoid inflammation. It has also been reported elevated in some cancers, although data is sketchy there.

The bugs can hide in granuloma, the Swedish Rickettsia study found that, and Dr Alan Cantwell found them in skin biopsies from Sarc patients in the 80's. Here are two of his papers:

Histologic observations of variably acid-fast pleomorphic bacteria in systemic sarcoidosis: a report of 3 cases

Variably acid-fast bacteria in a rare case of coexistent malignant lymphoma and cutaneous sarcoid-like granulomas

In order to 'see' these bacteria you need a powerful electron microscope with 80,000 magnification, like the swedish team used, and good luck to find the needle in a haystack.

Luckily, one or two good antibiotics are capable of seeking these bugs out and killing them. It still takes lengthy treatment, however, to get the antibiotic into all the granulomas and other cells they have infected.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Christian (---.ipt.aol.com)
Date:   01-15-03 13:04

Trevor

I guess that when I said I need to see the bugs, I didn't express myself to well. What I meant is that I have sarc symptoms, have elevated 1,25 D but no X-rays showing any kind of damage or swollen lymph node, and without that, the doctors I will see will doubt that I have sarc, and it is very possible I won't get my Minocin Rx. May be I want to prove them without a doubt that I have that sickness. Or if it's not sarc it has to be something else, hence the question about what could boost 1,25 levels.



Thanks for your help and patience
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-15-03 13:24

Christian,
Your Docs will not know anything about the other diseases having high D. They will likely fixate on your marginally high calcium data, however, and want to hit you with prednisone. Be prepared to deal with that.

Just tell them what you need, Minocin is an easy drug to prescribe. Make sure you carry with you printouts of all the studies showing the bacterial pathogenesis, though.

Bon Chance,
..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Kathy Black (207.6.43.---)
Date:   01-16-03 18:17

Hi Trevor & others,
Thank you for the invaluable information and your patient explanations. I will do my best to keep this short.
I had my D and ACE levels tested and since I live in Canada, used the conversion table. Would you please verify that I have this right?

25 D 46 Range 25-100 nmol/L
converts to 18.4 ng/ml, which is good because it is low.

1,25 D 178 Range 40-120 pmol/L
converts to 68.5 pg/ml, which is very high

D-Ratio 68.5 / 18.4 = 3.7
My understanding is that this is evidence of active inflammation


ACE 32 Range 10-52 U/L, which is normal

I have been on Prednisone for 2 years and 3 months (was on 60 mg./day for 7 months, and have been on 10 mg/day for just over 1 year), so I know this has suppressed the ACE and I think it also suppresses D1,25???
I also take:
200 mg. Plaquenil, 2 X daily
1200 mg. Bonofos 2 X daily (similar to Fosamax)
and was on MTX for 1 year, stopped at the end of August 2002.

I was diagnosed with sarcoidosis of kidney (biopsy in Oct. 2000 after acute renal failure), with hypercalcemia, hilar lymphadenopathy, and pleural effusions. No long term lung damage, however, kidneys at about 55% function. Sept. 2002 hysterectomy revealed "Extensive non-caseating granulomatous inflammation..."
I took all recommended papers to Internist who agreed that it was well worth trying Minocycline. Started 100 mg. every other day and will keep you up to date on my experience & results. I am taking 150 mg. Avapro daily and working on Dr. to increase to twice daily.
Again, thankyou!
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-16-03 19:30

Kathy,
Perfect conversions and analysis.

ACE is suppressed by prednisone. It suppresses 1,25-D but not by as much (25% - 40%)

I have no experience with Fosamax. You should talk with Doc about temporarily discontinuing it while you concentrate on your sarcoid remission. Maybe it does no harm - I just don't know. I am sure your high 1,25-D is causing a lot of bone resorption, and you need to focus on that, IMO.

ARBs will help the kidneys heal. Reducing the Angiotensin II will also help remove some of the collagen (fibrosis). So don't give up on them yet...

If you didn't get herxheimer when starting the Minocin I doubt that it will do too much good. But it will not do any harm for a while (except, maybe constipation). Maybe Clarithromycin would be a better choice for mycobacterial infection.

You will need Avapro three times a day at 150mg, based on my experience. Or a cocktail of Avapro and Diovan would be even better. Diovan is a little more effective, but it does not block the sinus region, for some unknown reason, whereas Avapro does. I give you a 1% chance of selling that concept to Doc, however, I mention it as a semi-optimal therapy. Half a Diovan under the tongue dissolves quickly and can knock down a D surge in 15 minutes. It is the only ARB that can do that. Again, 1% chance of getting Doc to buy off on that one - that's why we need some controlled trials of ARBs in Sarcoidosis so urgently...

..Trevor..
ps: thanks for sharing your results. Another set of data points on the scatter plots. It all helps...
 
 Re: My Vitamin D and ACE test results are back!
Author: Kathy Black (207.6.43.---)
Date:   01-16-03 21:18

Thanks for your response, Trevor.
Bonefos is clodronate disodium. It belongs to the class of bisphosphonates which bind to hydroxyapatite and inhibit formation and dissolution of calcium crystals in vitro.

Bisphosphonates including clodronate act on the bony skeleton causing reduction of normal and abnormal bone resorption. Clodronate alters the activities of osteoclasts and osteoblasts and the balance of bone resorption and bone formation is changed resulting in reduction of bone turnover. In responsive patients, inhibition of abnormal bone resorption by clodronate leads to reduction of hypercalcemia of malignancy presenting with or without demonstrable skeletal metastases. This has kept my blood calcium in the normal range and hypercalcemia in control.

Amazingly, I had a very strong Herxheimer reaction to the Minocycline for the first 5 weeks. The first 2 weeks I had small chest pains, headache, aching all over, eyes very sore (wore dark glasses) and felt generally horrible the day after taking pill. Now it is still noticeable, but not so intense.
If it stops, I'll try Clarithromycin as you recommend.

I will talk with Dr. again about Avapro and if I can get agreement to twice a day I think I'll be doing well. You're right about the 1% chance at 3X daily.

I read in a previous message that it would be better to start to wean off prednisone when the Herxheimer was not too bad and the D ratio was lower, in cases where the antibiotic was started first. I tried to get off it last year and by the time I was down to 10 mg. every other day, my kidney function deteriorated to an unacceptable level. I am determined to get off this drug and was planning to have another D test in February and then wean off. Does this make sense (even if I have to go without the increase in Avapro)?
Thanks again,
Kathy
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-17-03 00:41

Kathy,
Yes, I know full well what Bodefos and Fosamax are supposed to do, my skepticism is that they do in fact work that way in a real sarcoidosis patient.

Bone formation and regeneration is 1000 times more complex than the Bonefos literature presents it. In your case you have prednisone shutting down your RANK - RANKL metabolism and you have high levels of 1,25-D activating osteoclasts. The Calcium homeostasis is a complex one, involving the thyroid and parathyroid hormone, and to say that Bonefos can control your hypercalcemia is to confirm exactly what I was afraid of - it might be capable of interfering with your recovery. I hold to my suggestion that it might get in the way, it might be helping to damage your kidneys.

High levels of 1,25-D cause calcium from bone to be absorbed (resorbed) into your bloodstream. It then gets deposited into soft tissue, especially the kidneys. You can often see white spots on Xrays and CT scans. Deposition is the very last thing you want to happen. There is no data on whether Bonefos and Fosamax make this effect worse or better as your body is adapting to normal levels of 1,25-D. That is why I suggest using an absolute minimum of medication, and I regard both these drugs as superfluous and possibly damaging to your recovery. You can start using them again in six months or so, with little incremental harm to your skeleton.

If you have any kidney function degradation you should get Doc to increase your Avapro dosage immediately, as Canada recently approved Avapro for the prevention of nephropathy at 150mg every 12 hours

The ARB therapy is the single most important thing for you to do right now. You should find that weaning from the prednisone is a lot easier once a good angiotensin blockade is in place, and you have to protect your kidney function. For that you really need 150mg every 8 hours, so try and talk over all the issues with Doc.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Dorothy S. (---.roadrunner.nf.net)
Date:   01-20-03 17:04

Trevor,
On 12-18-02 20:25 you indicated that I should give it a couple of weeks and then try a new antibiotic. I have a few questions concerning this.

First you should know that all my symptoms have improved dramatically except my joint and muscle pain, which has not improved at all.

It has been a few weeks since I got my blood test results back from the doctor and as per your advice I will ask my doctor to prescribe a different antibiotic. However, I need to know the following:
1) Is the antibiotic called Clarithromycin? If not what is the one I should take?
2) What dosage do you recommend?
3) How Long should I take it?
4) Should I continue taking Minocin while on the new antibiotic?
5) I am going to purchase the sunglasses however at this time I can only afford to purchase one pair. Which should I buy the ones for indoors or outdoors? We have a lot of snow and the glare is very bad.

Thanks for your help, Dorothy S.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-20-03 17:25

Dorothy,
The lighter pair (901) can be worn over another pair of sunglasses when you go outside. The lighter pair is cheaper, too. 701 is more fashionable if you don't need to wear another pair of glasses.

Clarithromycin can be taken at the recommended dose (2 tabs a day). I haven't seen any reason to continue for more than a few days after the herxheimer stops because these bugs grow so very slowly, and are unlikely to develop resisitance. See what Doc thinks.

Bactrim DS tabs at the normal twice a day for the same period, 3 days after the Herxheimer stops, has been very good for me because it penetrates tissue better (I think). Don't use the generic with the "DAN" imprint on it. Other generics are fine.

Minocin is your choice, but I would stop. Nobody really knows, but I think a short "top-up" course every month or so is going to do the job. See what Doc thinks.

..Trevor..
ps: If you drop me an email with your address, I will loan you one of the copies of Dr Cantwell's book, which he made available, loans are on a 'needs' basis.
 
 Re: My Vitamin D and ACE test results are back!
Author: AmberG (66.95.50.---)
Date:   01-31-03 10:17

Well I just got my Vitamin D tests results although it looks as if they only ran one test, the 1,25 D which was 49.4 pg/ml and it says the norm is 15.9-55.6. While I was having bloodwork done I also requested a retake of the ANA which was negative this time but was on the high end of normal at 1:40 so they want to retest again in 3 months. Do the normal tests mean that I can relax for a while or do I still need to be careful of the vitamin D? Thanks in advance! Amber
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-31-03 10:25

No, AmberG, your 1,25-D result is NOT normal.

Even Merck, the doctor's handbook, says that maximum is 45 pg/ml. At that level 98% of the popualtion would have values lower than yours.

The labs' range is skewed, because so many Docs fail to diagnose people with high 1,25-D as being sick. So the labs stick them in their "normal" sample instead of their "sick" sample.

By not bothering with your 25-D we are now in a situation where we know your 1,25-D is high, but we do not know why. Is it inflammation, or too high an intake of Vitamin D??? That is what the D-ratio would tell us.

I suggest you show Doc that Merck says you are above normal, and ask for the 25-D test to be done ASAP. Of course, to be most useful, they should have been done at the same time, but....

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: AmberG (66.95.50.---)
Date:   01-31-03 11:42

Thanks Trevor! I printed out the info from the Merck manual and I'm trying to call my Drs office now!! Amber

 
 Re: My Vitamin D and ACE test results are back!
Author: Jan Lewis (---.lgeenergy.com)
Date:   02-04-03 08:18

Trevor,

I finally got my Lab Results this AM. They are as follows:

1,25 Dihydroxy 51.7
25-Hydroxy 14.7
ACE 106

No doubt these are high. Can you help me decipher?

Also, with respect to the Bactrim DS, what mg amount and is this taken in addition to the Minocin or instead of? Also, with the results listed above, should I also add an ARB? I've forgotten the name of it but will look back at threads.

Thanks.
Jan
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-05-03 09:31

Jan,
Your 1,25-dihydroxyvitamin-D at 51.7 is high. 99.4% of the population would have values lower than that. It is clearly above the 45 maximum of Merck. It shows that your body is failing to regulate internal production of 1,25-D, confirming you have the genetic predisposition.

The D-Ratio is 3.52 also indicating systemic inflammation that should succumb to antibiotics.

Doc will prescribe your Bactrim DS most probably at one every 12 hours (q12h)
Whether it is taken in addition to or complementary with is part of the creative process that will be necessary for each indicidual to get best results. Initially I kept periods on each antibiotic seperate, so that I could figure out which was doing what, but they seem to be more effective working together. Doc might agree to Bactrim on even days and Minocin on odd days, for example. Every few days you might double the dosage of either or both, taking them to the max that Doc will be happy with. Creativity is the issue, because as bugs are exposed and tissues heal then more bugs are exposed.

The bugs have been living and multiplying in your body for years (a guess based on your D-ratio) and it will take some time to penetrate all the tissues and kill them all.

The ARB is a seperate issue altogether. The ARB increases your tolerance to Vit D intake, most probably by interdicting the inflammatory cycle.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Lana (---.dialsprint.net)
Date:   02-06-03 09:27

Trevor - I have an appointment with Doc tomorrow (I broke down and decided to go see them :~ - ) I was waiting until I needed to but I just keep getting better! Anyway, I need to have the D tests done although I realize they should have been done early on. I also have decided, upon reading various posts, that I would like to try the Clarithromycin. I have a gut feeling this is the one that I need. Back in l979, I had an enigma throat/tonsil infection that landed me in the hospital for a week and almost drove my then Dr. nuts. With massive doses of broad spectrum antibiotics, it finally abated but I'm wondering what it may have left behind. Also, my daughter test positive to TB even though she has never had it. The '79 problem tried to rear its ugly head off and on for years but everytime it started, I would go beg a Doc for a broad spectrum and it would go away. The weird thing was that the way it would begin is my neck would start getting a little stiff on one side or the other. Anyway, suffice it to say that I have had a lot of throat infections and I figured that Clarithromycin would be the drug of choice. To get to the point, (sorry) what is the dosage I should ask Doc for tomorrow? ....Lana
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-06-03 09:38

Lana,
The three most useful antibiotics are Minocin, Clarithromycin and Bactrim DS. Doc should not have trouble with any of them. Why not ask for them all, and explain that you will only use the ones that work (duh? how will you know if it is working? - Herx, doc...)

Recall, there is a difference between Doxycycline and Minocycline. Can you notice it? Who knows? it depends on the species of bugs and where they are...

Bactrim DS is q12h normally, as is Clarithromycin. (two a day)
Personally, I prefer to leave that rest day for the 1,25-D to stabilize in your tissues and make the bugs more susceptible again. These bugs are already resistant forms, and the qod regimen (every other day) really is not going to cause any problems, IMO.

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: chelsea (---.psych.pitt.edu)
Date:   02-11-03 10:49

My Vitamin D 1,25 was 32 and the reference range was 15 to 60 PG/ML

My Vitamin D 25-Hydroxy was 22 and the reference range was 10 to 68
NG/ML

So if I've calculated the ratio it's 1.45 which suggests minimal inflammation correct??? They didn't do an ACE this time, the last time it was normal???

I still have trouble with bright lights, horrible headaches off and on and the feeling in my throat like someone squeezing my trachea. My doctor said she'd prescribe Minoncin or Doxycycline.....will I have much of a Hexhemair??? My blood pressure is 100/70 so I won't be able to get Benicar.....will the antibiotics be enough to do the trick in my case?????

chelsea
 
 Re: My Vitamin D and ACE test results are back!
Author: Lana (---.dialsprint.net)
Date:   02-11-03 17:09

Trevor - Well, as the queen of procrastinators, I've finally pulled this off. I was tested and actually have my results back. They aren't as significant as they would have been if I had of had it done before I started the Doxy in early November of last year, and I apologize for that but there is room for improvement, I think. I know that I still have swelling going on because I can feel it in my throat. The tests were processed by LabCorp.
Vitamin D, 25-Hydroxy - 16.2 ng/mL
Vitamin D,1,25-Hydroxy - 41.7 pg/mL
ACE - 32 (I am still on 5 mg. of prednisone a day)

My Dr. said everything appeared to be "normal".
If I am figuring this correctly, my ratio is 2.57 which would coincide with my feelings of where I think I am. I know that I am a lot better than when I started reading this forum (and began antibiotic therapy), but I also know that I have a ways to go.
Since I had that strange little occurence when I took my 2nd 40mg dose of Benicar (after 12 hours) , I've held off increasing it but now I guess it is a necessary thing to do. For the sake of research, when I took that 2nd dose, after about 47 minutes, it felt like someone had injected me with liquid fire - I believe it to be vascular. I didn't have any trouble breathing and it lasted for 2 to 3 minutes. I do have trouble with panic attacks, but this came "out of the blue", there was no increased pulse or breathing. And I was not thinking about anything happening when it occured. I was just sitting in a recliner resting. Anyway, that is where I am at and will wait for your response and maybe an "ATTA GIRL!!!" for finally getting this done. Just kidding - it is insane, though, that when someone is trying to help you, some of us do not go get our tests run . . . .Lana
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-11-03 17:42

"ATTA GIRL" Lana.

A 2.57 D-Ratio indicates that your kidneys have lost control of the production of 1,25-D in your body. Normal? Oh well...

Your ACE reading was probably depressed by the prednisone

Benicar depresses your Angiotensin II and 1,25-D metabolisms pretty rapidly. It can be rocky while they readjust - but your body will never look back from there...

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-11-03 17:53

Chelsea,
1.45 D-Ratio means your kidneys are almost fully in control of your body's 1,25-D production, and you therefore have a pretty normal level of 1,25-D in your blood.

It could still be very high in specific tissues or organs, for example, Caroline (from MO) had a 1.4 D-Ratio, yet there was enough inflammation in her brain to stop her walking properly and to give her terrible herxheimer. Similar, folks with RA have D-Rations in the 1.2-1.8 region, yet the value of 1,25-D in their inflamed synovial fluid (around the joints) rises high enough to cause all that disfiguring inflammatory growth.

But you certainly don't seem to have your well-perfused organs involved, and that is a blessing

The rule with Herx is that if somebody's 1,25-D is high they will get bad herx. But if it is low the herx may take a month to gradually get to a peak, may hit them immediately and vanish, or it may just nag away week after week, getting measurably better, but at a painfully slow pace.

You only have to put up with the herx once, and you can skip taking the dosage on days before you know you will need 100% of your mental and physical capacity. It is easier to manage herx than the vagaries of the sarcoidosis itself, in my experience. And once it has gone away - it has gone away - until it comes back again and takes you to the next rung up the ladder to recovery...

I found my eyes and brain were fixed at totally different times from my skin. Start the Minocin therapy - take it up to 100mg qod for a month and if the eyes don't fix up then try Bactrim DS qod for a month. Add hottub/hot-bath stimulus, and exercise, and everything you can think of to get that antibiotic to flow to as many tissues as possible.

It was the Benicar that fixed my migraines. Meg had lower BP than you when she started it. Take a look at what she wrote in the thread on "ARB nuts and bolts"

..Trevor..
 
 Re: My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-11-03 20:54

Chelsea,

You don't have to rule out the possibility of ARBs. Remember that saying, "ask and it shall be given you.."

My blood pressure runs low, but I was able to show my doctor the research and he saw the rationale for using ARBs. Read through the posts on the topic, "ARB therapy - nuts and bolts." Print out any articles you might want to share with your doctor, and ask him whether you might have a trial of this medication. Much of the time our doctors feel duty-bound to offer us the standard therapy. If we show a willingness to accept responsibility for our own health, including research and understanding, and we ask our doctor for other options, then (and usually only then do) these become a possibility.

This article on Angiotensin blockers might be one your doctor would find persuasive. It discusses the non-hemodynamic (not blood pressure) effects of Angiotensin II such as tissue repair, a reponse that at excessive levels (as in sarcoidosis) leads to organ damage from fibrosis. It explains that blockade of the renin-angiotensin system will significantly slow the progression of fibrotic disease, although higher doses than normally used are needed to actually halt fibrosis.

Best wishes,
Belinda
 
 Re: My Vitamin D and ACE test results are back!
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   02-19-03 08:23

I was diagnosed with sarc 9 years ago and in the last 3 it got really bad. I had the usual symptoms of fatigue, shortness of breath and recently muscle pain. I was on predensone for 3 months and my breathing returned to normal. 1 year later after discovering this website I had my D ratio checked. The results show that it has gone into remission. I think??

Ratio = 1.19
D1,25 = 80
D25 =67

ACE 80

I have forgotten the units but the report stated that the D levels were well within normal limits.
The ACE is still high.

I do not feel any better. I still get incredible fatigue and muscle pain. I enjoy hiking and biking but I find I still do very little as I am usual too tired or in too much pain to go out. I do how ever feel much better than I did 2 years ago and im thankful for that but I find it strange that I still have fatigue and muscle pain at this stage.
Any thoughts anybody?
Also have I posted this in the correct location?

Regards kev and thank you to whom ever started this site to spread the word of sarciod treatment.
 
 Re: My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-19-03 08:30

Kevan,
The maximum level for 1,25-D specified in Merck (click here) is 45 pg/ml. Your 80 pg/ml level is really high. Painfully high.

The reason it is so high is that your 25-D indicates you are suffering from excessive intake of vitamin-D, probably from taking an osteoporosis supplement or cod liver oil. Your 25-D ought to be between 12 and 18 ng/ml to be average for a sarc patient, it is 67 ng/ml

So it is no surprise that you are feeling really bad.

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   02-20-03 13:28

Thanks Trevor.
I think i misled you by not posting the units of measure for the d tests.

it is mol/L

So my results are:
D25 = 67nmol/L normal is 25 to 100
D1,25 = 80nmol/L normal is 40 to 120
ratio = 1.19

ACE 80.

These units are different to the ones you stated and are considered to be in the normal range in Canada. I am sorry for the confusion over the units.

As i stated before i still feel quite unable to run/bike etc as i did a few years ago ,i feel extremely fatigued and in moderate pain. I think this is strange considering i have gone into remission according to the d test results. Also my lung xray has shown considerable improvement in the last year.

I am happy for the good results but I guess i expected to feel much better than i do presently.

Any thoughts on this?

thanks

kind regards
kev
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-03 15:55

Ah yes. Ooops. Sorry about that.
The conversion for 25-D shows an equivalent level of 26.8 ng/ml, still high for a sarc patient, and the 1,25-D of 30.8 is close to normal.

I suspect your ACE of 80 is using those strange Canadian/UK ACE units, so that also looks higher than it really is.

What the 1,25-D reflects is the amount of systemic inflamation, and whether your kidneys are in control of your 1,25-D production. Which they would appear to be. That doesn't mean to say that it will not surge, nor that there is not inflammation in critical areas where the 1,25-D is not easily swept into the bloodstream from the inflamed tissue. Inflammation in the brain is just this type, and does not seem to contribute much to the circulating 1,25-D levels. Which is not to say that it is not important! Similarly for skin lesions, they typically don't send their 1,25-D to the bloodstream either. It stays in the local tissues, doing its dirty work there without signalling to the rest of the body what is happening.

Does this help you understand what the results mean? Basically that your systemic (well perfused) inflammation is small, and that you are dealing with compartmentalized (eg neuro) inflammation and with the underlying genetic pre-disposition, the surges from which can be a real pain...

I would still suggest you be real careful when starting on Minocin. It affects your symptoms by acting on the local tissues, as well as the bloodstream, and you might still get quite bad herx.

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Kevan Woodcock (---.pacificinsight.com)
Date:   02-21-03 08:57

Thanks again for your reply , it has made me realise that i must look into this further. I was thinking that because the d ratio was good nothing could be done and nothing is. I will go and see my doctor again regarding this.

Thanks
kev
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Judy, Idaho (---.coldreams.com)
Date:   02-21-03 14:10

Getting off this prednsione isn't fun at all......I'm down to 2.5mg daily ...
Here are the test results that my doctor ran after I took the papers into him from this site,
Calcium 9.2
Calcium , Ionized 4.88
CA, Normalized 4.80
VIT D, 1,25-DIHY 42 ( Test performed by ARUP Salt LakeCity, Ut)
So he feels that I am in normal range, so he is ok with me going off the pred., now he is my m.d. and my pulmonary doctor I will see in April for more test ,????why do I still have the tingly feeling in the side of my face?Pain in the upper left side of my back.
The lesion that I had on my elbow is better(just a scar left) everything that seems to bother me is on the left side but I was told I lost alot of volume in my right lung and if I look at my self in the mirror you can see where the right side is sunk in more. Could this be the begining of remission, should I stay on the pred at the 2.5mg. until I see the pulmonary dr. in April? I would really hate to mess things up. I have cut the v-d in my diet and staying out of the sun the only other problem I have had with the pred. has been hair loss ( my cousin a beautician has me using Nioxin and that stuff really works, I have all this new hair growing in, it's grey but I will take it!!!!) my md also put me back on HRT so that also helped. But I do have veins that have broken so I would like to be off the pred.
Thanks for any suggestions,
Judy
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-21-03 16:37

Hi Judy,

I'm pinch-hitting for Trevor tonight. Hope you don't mind.

Your calcium is within the normal range but we know that's not important because many sarc patients test normal for calcium. Did your MD only check the 1,25-D? It is higher than average even though it is below the Merck high of 45. As Trevor recently pointed out, this level can be artificially low if the inflamed tissue involvement is in organs/systems not well perfused by the blood such as skin and nerve which sounds like it might be in your case. If you have the 25-D level we could figure out if your D-ratio is high. This would give us a better picture.

The good news is that your MD is encouraging you to continue to wean from the Prednisone. This is a step in the right direction. I know that this is a tough thing to do but Prednisone is contraindicated with antibiotic therapy and that is your goal.

I think you need to convince your MD that your symptoms are more significant than the 1,25-D level. This hormone can surge quickly and sarcoidosis patients need to keep it in the 20-25 range. I would take advantage of his receptiveness to get started on the ARB and Minocin before you see your pulmonologist in April. There is nothing to be gained by delay and the pulmonologist is less likely to be receptive to this new treatment. Hopefully, by then you will have made some real progress in symptom resolution that will be valuable in presenting your case.

IMO, your hair loss, nerve symptoms and back pain are an indication that your sarcoidosis inflammation is still active. Other patients here have serious symptoms even though their 1,25-D is not extremely high, myself included. The HRT should help relieve some menopausal symptoms that you may have been confusing with sarc symptoms and I hope it helps you feel a bit better.

It sounds like your MD is open-minded and will be willing to help you beat this disease. Good luck,

Meg
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Judy, Idaho (---.coldreams.com)
Date:   02-22-03 06:30

Meg,
Thanks for the info.
I am going to stay with this and try and get on the meds. I have also had a sinus infection have been on Ceftin 250mg.x2daily and I don't think that it got it so I need to deal with that.
Something I have found very interesting is that there are 6 other people here in town with sarc. and each one of us has had different treatment and we all go to the same clinic ( 2 pulmonary dr. there treat this) anyway one of them is a man say he is 40 something and he was treated with 3 days iv meds. in the hosp and then pred. for 6 mos. and he is in remission, the other lady I talked to refused the pred.(her brother died from problems/pred she said) and has problems breathing and with her bladder now(I have told her she needs to stay on top of this she is 60) we go to the same doc here in town so I hope that after I work with him to share that with her. We live close to Libby,Mt. where I am sure you have read about all the lung problems over there and here in our town they have done the studys on the Handford effect. We also seem to have a high rate of MS and Lupus here. My son also has lung problems and when he went to college he said he had a cold one day and then couldn't breath good, been on inhalers since then, so he is here in town teaching and is going to have the x-rays they took of this chest sent here as the dr told him he's lungs look a mess and that was all(he goes to the same dr. we do) so that will be interesting to find out what is going on with him.
I find going off the pred. if I use one acteaminophen/diphenhydramineHCI (the sleep aid)at pm it really helps, I use to work at the Library here for 8 yrs. and lived on benadryl before I knew I had sarc. use to joke with my co-workers that we were going to get" Library Lung", cause when we got out in the fresh air we all felt better????who would have guessed ha!ha! to me.
Thanks for all your help,
Judy
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-22-03 12:46

Hi Judy,

I'm not sure if you knowing six other people nearby with sarcoidosis is representative of an increase in incidence. There are just too many variables. But we do know that many of the diseases you mention share the same biochemistry, that the predisposition to this mmune system defect is genetic and that other antigens besides microbes can trigger the sarcoidosis run-away immune system response. These factors may account for what you are noticing in your community.

I would take issue with your description of these 6 people all being treated differently. The gentlemen you mentioned undoubtedly got IV steroids in the hospital and the lady would have been treated with steroids had she accepted. Steroids can effect an improvement in symptoms and some people do remit spontaneously but the standard steroid treatment is full of pitfalls. I hope you will share this website with these patients as well as your physician.

The Ceftin which you took for your sinus infection is one of the cephalosporins which work by inhibiting bacterial cell wall synthesis. Since most of the microbes that are affecting you are probably of the cell wall deficient variety, this antibiotic would not be expected to have the same effect as one of the tetracyclines. It may, in fact, encourage bacterial mutation into cell wall deficient microbes.

Hopefully, once you get started on the Benicar and Minocin, you won't have to rely on antihistamines for symptom relief.

Hang in there,

Meg
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   02-22-03 14:01

I had written to the endocronologist who did my workup in 2001.

I was sent back my list of tests and was sad to see he did not do a Vit D test. BUT he did do the 1,25 D test.

9/22/01 (this was a year and a half ago now)

1,25 Vitamin D 63 pg/ml (values: 15 - 60 pg pg/ml) FLAGGED HIGH


He did not do an ACE either but it was

40 6/99
53 3/02 (they take into account I live at 4,500 feet as well so it will run a little high)
Now I need to get my current doctor to do a new set of Vit D and ACE tests and see whats up.

I did also have:
Urine Calcium 31.8 mg/dl (values 0.0 - 29.1 mg/dl) FLAGGED HIGH

Leptin 111.5 ng/ml (values 3.7 - 14.8 ng/ml) FLAGGED HIGH
(I am 120 lbs overweight)

I do not have any lung symptoms right now and wonder this:

I have also been taking multivitamins with 400 IU Vit D every day for the past 10 years and having milk and ice cream which Vit D. I was taking this at the time of test as well.

If my Vit D ratio is too high....and I don't have any symptoms that I know of..should I get treated?

Lynn
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-22-03 14:28

Lynn,
63 pg/ml is very high. Normal high is 45 pg/ml, despite what the lab flagging point might be.

My studies have confirmed that a sarc patient has an inability to control generation of 1,25-D in their bodies. In your case you have been taking D supplements in multivitamins and milk for years, and this intake clearly overloaded your body's ability to handle and regulate the hormone (1,25-D)

Thus your hormone level has been running at (if we assume that the 63 number is typical for the past few years) levels which cause bone resorption and calcium deposition into the soft tissue. Both of which will have been harming your body.

There are luddites in the medical community that even today are critical of my studies and critical of my opinion that Sarc patients must be warned to stay away from ALL Vitamin D unless their 1,25-D has been measured to be within the normal range.

Your case is an excellent example of why these guys are not only wrong, that they are being negligent in their responsibility to the patients who have been placed in their care. Being a top-flight sarc specialist brings with it a responsibility to care for the well-being of all sarc patients. The entire well-being, not just the pieces that specialist might be most interested in.

..Trevor..
ps: you should get your bone mass checked. It is likely to be low. There is not really much you can do to correct that, except to cut the Vit D back like your doctors should have advised you to do before I came on the scene. It was 1950 when the Vit D anomalies were first called to their attention by Guy Scadding. Somebody has got to be held responsible, IMO.

pps: Oh, yes, if your D-ratio is above 1 you should look at a course of Minocin antibiotic therapy. With Dr Brown's every-other-day protocol, the risk is low, and the potential rewards are high (again, IMO).
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   02-22-03 15:33

Thanks Trevor..

I did forget to mention that I had a full body bone scan.

They found some bone loss in the right hip. I am 41 (39 at the time of the scan).

What I find interesting and think is a part of this is that I have been told by the opthomologist that I have calcifications in the eye lids (I think that is what he said) and a mammogram showed some calcifications which they said were benign (my mom had this too at age 42).

Now to find a doctor who will do the antibiotics!!! That will be a tough one in a town of 3,500 and only 4 doctors. First is the updated testing for the Vit D and ACE..then go from there.

I am going to stop using the multivitamin. Has anyone seen a multi without the Vit D? I am thinking of getting a multi mineral then adding the A, B, C, E on my own.

Lynn
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   02-22-03 16:01

I have a few questions:

1) Do you have to avoid Vit D forever?

2) My blood calcium levels are aways normal range, shouldn't they have been above normal if my 1,25 D is 63 pg/ml?

Also, Trevor wrote on one message:

"I know I am beginning to sound like a broken record but I would recommend talking with Doc about a course of low-dose Minocin - I am preparing a paper that you will be able to print (in a few days) with my latest ideas on dosages, etc. ?

Trevor, have you done this already and if so..where can I find it?

Thanks,
Lynn
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-22-03 16:34

Hi, Judy,

This is in response to your post earlier today. I noticed you mentioned battling a sinus infection. Are you and your doctor aware that sarcoidosis can cause sinusitis (inflammation of the sinuses), even if there is no lung involvement? This report on PubMed describes the presentation of sarcoidosis of the paranasal sinuses. The authors said, "Sarcoidosis of the sinuses should be considered in the differential diagnosis of sinusitis, especially in association with nasal polyposis, even when the sarcoidosis has not been otherwise diagnosed." Here is another article (requires registration, but it is free) about diagnosing sinonasal sarcoidosis.

I know the experts think nasal and sinus problems are uncommon manifestations of sarcoidosis, but the symptoms are often mentioned by patients posting here on SarcInfo.com.

The above articles noted that sinonasal symptoms can be difficult to treat. I have found that the Benicar I am taking is quite effective at keeping my sinonasal symptoms at bay, and I certainly don't miss them!

Best wishes,
Belinda
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-22-03 17:43

Hi Lynn,

It looks like you have lost some valuable time treating your sarcoidosis despite evidence of hypervitaminosis-D a couple years ago. This should help you redefine 'sarcoidosis expert'.

You're on the right track now though. I hope that the 2001 level of 1,25-D will be enough to convince one of your local docs to at the very least retest. Perhaps he will even be moved enough to get you started on Benicar right away and then the Minocin. Although it would be helpful to know your current D-metabolites first to guage the effectiveness of treatment. A couple more weeks aren't going to make much difference.

You won't have to avoid Vitamin D forever but you will always have to watch your intake because you have a genetic defect that doesn't allow your body to regulate it correctly. For now, eliminate those multivitamins and check all your other supplement labels, especially the calcium which often has D added. I don't know of any multivitamin without D. Your idea to supplement individually is a good one.

Blood calcium is often normal even if 1,25-D is elevated. There is a topic on this site called 'Your doctor will not do D-tests?' that explains this complicated subject in detail.

The paper that Trevor was referring to in the previous post is the newest of the physician papers at the top of this page- Minocycline Dosing Issues.

I hope that helps.

Meg
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-22-03 18:08

Lynn,

Based on the experience I had when my blood 1,25-dihyroxyvitamin D went above 60 pg/ml, I guess you were very ill at the time your 1,25-D was 63 pg/ml. Since it has been documented that sarcoidosis patients can easily produce 1,25-D at more than twice the rate of normal people, I am surprised your doctor didn’t advise you to avoid vitamin D supplements, and even vitamin D foods and sunlight when your 1,25-D was that high. 1,25-D levels can quickly surge even higher when sarcoidosis patients are exposed to sunlight or vitamin D food sources, and high serum levels of 1,25-D remove calcium from the bones.

It has been known for years that blood calcium levels can be normal in sarcoidosis patients with abnormally high 1,25-D. The first thing that happens is that our 1,25-D rises and makes us feel increasingly sick from the symptoms of hypervitaminosis D. If the high serum 1,25-D continues, the urine level of calcium may rise (hypercalciuria), and the last thing that happens is that the excess calcium (drawn from bones) is observed in the blood (hypercalcemia).

Here is one medical journal-published explanation of sarcoidosis, sunlight, 1,25-D and calcium, explaining the end process in detail:
“There are several mechanisms by which increased circulating concentrations of 1,25-dihydroxyvitamin D3 are able to disturb calcium metabolism in patients with sarcoidosis. First, 1,25-dihydroxyvitamin D3 causes hypercalcemia, in part by stimulating intestinal calcium absorption. A low calcium diet, alone or in association with cellulose phosphate was found to normalize the calcium level in some patients with sarcoidosis. Second, 1,25-dihydroxyvitamin D3 directly stimulates osteoclastic-mediated bone resorption; skeletal granulomas are not required for this effect. The increased flux of calcium into the extracellular space by these gastrointestinal and skeletal mechanisms, aided by suppression of PTH, leads to hypercalciuria. Chronic hypercalciuria favors nephrocalcinosis and renal stone formation. When the kidneys are unable to excrete the calcium presented to them either because of declining renal function, enhanced bone resorption, a sudden influx of dietary calcium, or any combination of these events, hypercalcemia ensues…
Vitamin D and sun exposure should be avoided completely in patients with the granulomatous diseases, especially sarcoidosis.”
Source: Chan FK, Koberle LM, Thys-Jacobs S, Bilezikian JP, Differential diagnosis, causes, and management of hypercalcemia, Current Problems in Surgery, 1997 June;34(6):445-523

Belinda
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   02-22-03 18:24

Good Evening Trevor,

I've read quite a bit of the information on this site, and figured that this would be the most appropriate place to post my information, one I received it all from the doctor.

A short case history: I started off in October or so, with dime sized to quarter sized cysts under the skin of my face - I don't know if this is sarcoid related or not. These went away in a few weeks. About the same time I developed terrible arthritis like pain in my right ankle and right knee, and develped shortness of breath on exertion and tightness in my chest. Arthritis went away at end of December, and a cat scan(december 26) showed bilateral hilar lymphadenopathy and mediastinal lymphadenopathy - all about 1cm to 2cm in diameter. My lungs appeared normal. January 14th, a mediastinoscopy showed positive for sarcoidosis. Most of my problems seem to be in my chest...shortness of breath and tight chest. My eyes check out normal, and an EKG was normal. I am still feeling like crap periodically on a daily basis...weak, lightheaded.

I guess I feel lucky compared to some people, as my physician has been agreeable to performing bloodwork and other tests that I've requested, utilizing information from your site. Thank you. Here is my info.

ACE level from early December is 95
Calcium is 9.8 mg/dl (Quest) from sample taken 2/13
Vit d-25 is 22 ng/ml(Quest) from sample taken 2/13
Vitamin d1, 25 is 34 pg/ml (Quest) from sample taken 2/13

All of the following are also from samples taken 2/13 and from Quest
total cholesterol is 216 mg/dl
Triglycerides are 270
HDL is 29
LDL is 133
Chol/HDL ratio is 7.4

I am not sure where I stand as far as needing/benefits of antibiotics. As I said, my main symptoms are tightness in my chest and shortness of breath. I also have fatigue and am lightheaded....almost like a low-grade flu all of the time. I don't know if this will help, but along with my wife and father-in-law, I got the Norwalk virus in December, and while I vomited more than they did, I only took a little bit longer to recover, so I don't know if that says anything about the state of my immune system. I do have a prescription for doxycycline for facial acne, but am unsure if that would benefit my chest/enlarged lymph nodes. I would appreciate your input on my situation. Should I request the minocycline, or should I wait to see if my condition gets worse or better. Any thoughts would be appreciated. Oh, almost forgot, I am a 32 year old white male, and I worked in the environmental industry for about 7 years.

Once again, thank you for your informative site. You've given me some hope.

Brian
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   02-22-03 19:12

Thanks Belinda and Meg...

Belinda, you wrote:


"Based on the experience I had when my blood 1,25-dihyroxyvitamin D went above 60 pg/ml, I guess you were very ill at the time your 1,25-D was 63 pg/ml"

This is a puzzle to me because I was feeling great when I went to him. I went to see him because I have had vulvar burning since 2000 that started after a bad yeast infection (from birth control pills which I no longer take).
My vaginal pH was too high then I got infections then finally got them all cleared up only to have burning remain. I thought it might be hormonal and I went to see the endocronologist. He said that he does this special mapping and that I had to do this for him to evaluate me. SO I did...he found a few things and gave me ketoconazole to get rid of a deep seated yeast. While the burning got better..I still have it at certain times of the month. I am using natural progesterone cream to see if that will stop it once and for all.

Anyway..that was my reason to see him. From 1997 - 9/99 I had a horrible 24/7 cough and short of breath. That was from the sarcoidosis. 9/99 it went away and my lung xrays improved.

Other than the vulvar burning (and now a tongue burning from Robaxin that caused mouth blisters. The blisters went away but left thin skin underneeth that burns with acid foods but it is getting better too) I have no other symptoms. Unless they are quiet symptoms.

That is why I want to get new updated Vit D tests and will stop the Vit D multivitamin and known foods.

Now I do wonder if the calcium "spilling" in my urine (that is what the doctor called it) could be causing the vulvar burning as I have read about Vulvodynia caused by Urine Oxalates. Something to think about.

Lynn
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-22-03 20:06

Hi Lynn,

It's puzzling to me to that you felt great with such a high level of 1,25-D unless you have symptoms you are not associating with sarcoidois or hypervitaminosis-D. Since vulvodynia is neurological in nature, it's possible it is related to your sarcoidosis.

Below are many of the common symptoms of Vitamin D toxicity:

1. Fatigue
2. Sleep disturbance
3. Asthenia (loss of strength and energy
4. Paresthesia (numbness, tingling, burning, prickling)
5. Arthralgia (pain where there should be no pain)
6. Dizziness and loss of balance
7. Muscle cramp, muscle paralysis and facial palsy

And:

Metallic taste in mouth
Somnolence (sleepiness)
Irritability
Tinnitus (ringing in ears)
Constipation
Frequent, Excruciating Migraines
Abdominal discomfort, Nausea
Photophobia (intolerance of light)
Muscle and Bone Pain exacerbated
Vertigo
Hyperthermia (incl. sweating)
Kidney Stones
Calcium deposits in Lungs (small white spots on Xrays)
Conjunctivitis (calcific)
Hypercalcemia
Numbness
Uncoordinated movement
Loss of muscle control
Facial Palsy
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-22-03 20:27

Lynn,
One of your key observations is the statement "unless they are quiet symptoms"

Sarc patients have so many struggles as they go through life. Sometimes it just is not possible for 'outsiders', even their loved ones, to comprehend the pain and inconvenience and suffering that we have had to endure.

Those of us that have survived the struggle develop a stoicism that is unique. It is something certainly that our doctors do not understand. It is a stoicism and strength to get through any problem, and a determination to get on with it.

This disease deals us many nasty tricks as we travel through life, and we put up with them. We learn to live with them. We can find them described as separate illnesses in medical journals, but to us they are "just part of life". We manage.

Our ability to put up with these "quiet symptoms", and soldier on, defines our search for "happiness", and helps us set the goals.

When I achieved "remission" those goal posts suddenly disappeared. Suddenly the barriers to "perfection", which had clearly stood out in the distance (of my imagination), were no longer there - there are no longer any bounds to what I think I can achieve. Looking back on those "quiet symptoms" I can now put into context how they built my character, but I am also very happy to put them into the past and focus on the new horizons which have opened up.

Sorry to ramble on so much, but I wanted to share my thoughts.

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-22-03 20:45

Lynn,
Here are the specific questions you asked (well the ones I can still remember after that soliloqy

1. Will you have to avoid D forever? No. When my 1,25-D dropped below 13.5 pg/ml I started supplementation. It is easy to tell the Hypo-D symptoms once you have felt them, just like the Hyper-D. I use "Nature's Life" "Calcium Softgels code 557" prn, as each contains 66IU of Vit D, a nice, not excessive, amount.

2. There is no defined link between high levels of 1,25-D and hypercalcemia (high blood calcium) despite the fact that any doctor you will ask is quite sure that there should be. It is an artifact of the way this hormone was investigated in the past, and the general level of poor education about its functions. Certainly, however, there is a definite evidence for a risk of hypercalcemia and hypercalciuria once the level of 1,25-D gets above 42 pg/ml. But not everybody has that problem. As Belinda's quotation pointed out - it is PTH and the other hormones that come into play in hypercalcemia, and the situation is not the simple go/no-go situation that current medical practice assumes it to be.

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-22-03 21:44

Brian,
I am sorry I missed your post earlier, sometimes things get pretty busy.

Well, your D-metabolites look pretty normal, not indicative of any widespread inflammation. You may still have localized inflammation, for example in your skin, joints and brain, but nothing that is leaching 1,25-D directly into the bloodstream in vast quantities. So that is good. The high level of ACE from a few months ago is a reminder that inflammation probably was widespread back then. It would be worthwhile to make sure that your current ACE has dropped, and that the D metabolite and ACE readings are currently in agreement.

Doxycycline is almost as good as Minocycline, and is certainly a good substitute to kill the CWD bacteria driving the sarc inflammation. If Doc is happy with you using it, try starting off using the same dosing guidelines as for Minocycline. Be careful of herxheimer. You might find that it makes a huge difference on the fatigue...

I personally would be more worried about your Triglycerides than your cholesterol (you haven't mentioned what drugs Doc has currently put you on). After my last prednisone therapy (in 1991) my triglycerides stayed high for a decade, until the antibiotics finally sent them back down to the 150 level. But, as I always remind folks, ask Doc for his perspective...

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   02-23-03 06:31

Hi Trevor,

Thanks for your input. I currently use 3 drugs. I use an albuterol inhaler, but probably not more than 2-3 times per week, and many weeks not at all. I've used allegra for allergies for about for about 2 years. I've had allergies since I was a child, but never bothered to go to the doctor for them until a couple of years ago. The pulmonologist gave me flovent - twice a day, 2 puffs each time - that I'm not even sure if I feel that it works.

Due to my work in the environmental industry, I had annual physicals - I can only find my last 3 years reports - which included all bloodwork and every other year chest x-rays. Every x-ray was fine until the last one that I had done in December at my PCP. My blood work follows,

Dec 1999
Triglycerides 287
Total Cholesterol 249
HDL 26
LDL 166

Dec 2000
Triglycerides 386
Total Cholesterol 181
HDL 20
LDL 84

Dec 2001:
Triglycerides 343
Total Cholesterol 208
HDL 33
LDL 106

Jan 2003
Triglycerides 270
Total Cholesterol 208
HDL 29
LDL 133

The doxycycline that I was given in Oct. was for the subcutaneous cycts that I got on my face, but before I even took a 1/2 dozen pills the cysts went away. I don't remember getting any herx symptoms then, but should I be concerned now, as maybe my D levels are lower now? Am I as concerned with herx with the doxycycline as I am with the minocycline? Would my herx - if I get it - be mild due to my low D levels. I have an appt. with my PCP this Friday to discuss my bloodwork results. Should I hold off on the doxycycline. Thanks for your time.

Brian
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-23-03 08:13

Brian,
Herx is usually mild when you have low levels of 25-D and D-Ratio
Herx is caused by bugs being killed and releasing endotoxin - it doesn't matter which antibiotic gives you the herx, the more bugs killed, the more herx. Doxy and Minocycline should be approxiamtely equivalent, except that Minocycline has about twice the ability to pentrate into the more obscure tissues, and will therefore presumably do a better job at getting rid of every last vestige of inflammation.

Your Triglycerides were getting really high in 2000/2001
Triglycerides are generally accepted to be a marker for tissue damage due to inflammation. What did the Alkaline Phosphatase look like?

Doxy and Minocycline work very fast on the most obvious microbes (such as your cysts) but the microbes are often very deep in layers of granulomatous tissue, requiring longer term administration of months or years to get them all. That is why Brown's low dose protocol (every other day) was developed.

..trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Brian (---.ne.client2.attbi.com)
Date:   02-23-03 08:55

Hi Trevor,

My alkaline phosphatase looked good. The levels are as follows:

1999 is 56 u/l
2000 is 57 u/l
2001 is 63 u/l
another reading from August 2001 was 59 u/l
December 2002 reading I can't find, but I had it done and it was similar to the above readings.

I'll have to go to the Work Health Center to get copies of my physicals for 1996, 1997 and 1998, to see what all of my cholesterol and Alk Phos. levels were for those years. I do have a physician's letter from my initial work physical in 1996 that said that all of my levels were within normal limits and that my total cholesterol was 170.

I will go back and reread the low dose protocol and will print the other papers for my PCP that you have told other members to in the past. I must mention that the eye doctor who did my exam was very interested in this info as well, and has requested that I send him copies. He had no knowledge of the research that has been mentioned at this site.

Thanks,

Brian
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Judy, Idaho (---.coldreams.com)
Date:   02-24-03 14:52

Belinda,
Thanks for the info on the sinuses, I never gave it much thought.
Judy
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Christian (---.ipt.aol.com)
Date:   02-25-03 14:25

Hi Trevor!


I feel pretty disapointed today because Doc told me I was not to get antibiotics from him ( I didn't even mentioned ARBs) I gave him all the good stuff I could get from here, gave him 1 month to read it but guess what, he didn't read what I brought (too busy). He said that even if I had sarcoidosis, he wouldn't treat me with antibiotics because there is no proven double blind studies proving it to be effective and that bacteria is not proven to be the culprit (that's a microbiologist talking here). And also there are side effects to antibiotics, to which I replied that it couldn't be worse than painkillers and others nasty poisons that were prescribed to me before but that didn't change his mind. I even offered to sign a letter discharging him of all responsabilities but that also didn't change his mind. Doc looked at me like I was demented, with my print outs and tests results. Before I saw that Doc, I saw an endocrinologist and she said that she was not impressed by a score of 144 pmol/l (with a range max of 133), but decided to control that metabolite. The score I got was:

25D: 58 mmol/l
1,25: 108 pmol/L


The microbiologist was the first one to see the results and said they were normal, but I said that since the first testing, I cut down on dietary D + sun light and probably it's showing already in the blood work ( and I know I feel a little bit better), and the D ratio is still above normal, but my pleading was in vain. For him I don't have sarc because I had a normal chest XR, negative gallium scan, my sed rate,crp and ACE are low and there is no such thing as a D ratio. The only thing he agreed for was for me to see a dermatologist (to my insistance) because I've been having a nasty rash on my right eyelid for the last two months. It's really itchy and it's peeling all the time. I pleaded to have a biopsy of it. Hope I'm gonna have it.

This doc said also that labs have differents ranges and for example a value of 144 in one lab could equal 123 in another lab and therefore the range is like a "standardization" so we can compare oranges with oranges and apples with apples because labs use different technologies. I'm not buying that explanation, I think it's baloney. Well I don't know what to do anymore. I feel like robbing a pharmacy and filling my pockets with Minocin and Diovan !!!


I am waiting for the results for my last chest X-rays, chest scan and PFT that were ordered by another doc. That new doc wrote on the request for the lung scan "hypervitaminosid D, eliminate TB, sarcoidosis and lymphoma". I had a dermal tuberculin test perfomed and the result was 11mm induration. The technician said it was borderline. I have the X rays at home but I'm not a radiologist. Is there a place I can go on the net to compare normal chest XR with mine? It's got little white spots spreckled everywhere. Also I have stomach problems. They performed a test where I had to swallow baryum and found a mass close to the duodenum. After I had a scan of that area and they discovered what appears to be a choledochocele. I'm waiting for a MRN for that. I'm also waiting for tonsilectomy because I have crypt that are always infected. Is there a connection with tonsilitis, choledochocele and sarc? When I'm going to have tonsils removed, should I asked for a biopsy of it?

What should I do Trevor, I need your advice


Christian

P.S Sorry for the lenghty post
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-25-03 16:08

Christian,

A study from Japan reported that chronic tonsilitis may adversely affect the resolution of sarcoidosis. If you have the surgery, a biopsy is only logical, and biopsy might reveal sarcoidosis.

Belinda
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-25-03 21:50

Christian,
Why is there an assumption that surgery is necessary to correct the inflamed tonsils? Might it not be possible that the same microbes causing the sarcoid inflammation are also inflamming the tonsils? And that surgery might not be necessary after effective antibiotic therapy? - It's just a thought...

Christian, you have nothing to prove to anyone right now. I don't see the point of further testing or biopsies. You have seen your 1,25-D and D-Ratio high, you know the only thing that can cause that is an immune disease. It really doesn't matter if it is a Lupus variant or Sarcoidosis or Crohn's or whatever - it has to be treated in the same way - with D-deprivation and antibiotics which attack the CWD microbes.

Print out the "Minocin Dosing Issues" paper (top right) and the "New Treatments Emerge..." and see if your dermatologist will prescribe Minocycline. You may be surprised how easy things are when you don't have to fight all the time, when you can work as a team. Your dermatologist is more likely to be aware of the reputation of Minocin than your other Docs. That's why some docs say that Minocin is good for "fixing skin problems" but not for healing the internal organs... but we know the secret to its effectiveness on internal organs is in controlling the level of 25-D (and hence the 1,25-D generated by the herxheimer)...

..trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Christian (---.ipt.aol.com)
Date:   02-26-03 04:34

Trevor,

I've been plagued with chronic tonsillitis for years and most doctors I consulted about that said there was nothing to do about it, that no medication could fix that and that surgery was out of the question because I'm to old. Lately, I saw an ORL and he said I had crypts in my tonsils, that they were producing yellow cheese like pus and that the only way to treat that was to chop-chop and antibiotics wouldn't fix the problem. It might very well be possible that my tonsillitis is CWD bacteria related. But having crypts, I guess it's an open doorway for recurrent infections, even after a successful Minocin run. Maybe surgery is the only alternative. What's your take on that one?


As for not having to prove anything to anybody, I understand what you mean, but the problem is that I'm faced with doctors who are not receptive to antibiotic therapy. I'm more than convinced that the only thing I need right now is to cut down on vitamin D and a script for Minocin and Diovan, but doctors don't see it that way.


We'll see how it goes with my dermatologist. I'll bring both papers for him to read.



Thank you for your help and advice


Christian
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-26-03 05:32

Christian,
I am puzzled why you are accepting the observations of the Doctor who started talking about crypts and yellow pus. Why is he likely to be correct when the others are wrong? It is important to evaluate health decisions understanding that the most successful doctors are also the best salesmen. And salesmen tell you what you want to hear.

Well, let's hope your dermatologist will be more receptive to the use of antibiotics. I must admit that if it were me, faced with the choice between a surgery or spending energies on finding an enlightened doctor, I would take the latter path. I have discussed so many surgeries from the inside, from the surgeon's viewpoint, and you really don't want to be on that operating table, believe me... It is a last resort...

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Lana (---.ard.bellsouth.net)
Date:   02-26-03 07:59

Trevor - Regarding the dosage of clarithromycin - I think I noticed that it came in 250 mg caplets as well as 500 mg caplets, which is what mine are. So do you mean to take 2 of the 250 a day or 2 of the 500? And to further the question, do you mean to split that up into 2 doses a day? Sorry to seem so dense, but I truly do not quite understand the dosing. Thanks, Lana
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   02-26-03 10:52

Trevor,
When getting the 1,25-dihydroxyvitamin D test as well as the D3, is the person supposed to fast before having their blood drawn?
What about the ACE test? I have never had the ACE test, should I? My ratios were 33/23
Thanks, Eileen
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   02-26-03 11:04

Trevor,
One more thing..sorry.
I noticed further up that you said Triglycerides were a marker for tissue damage? Mine were 86mg/dl and my alkaline phosphatase was 44 0/L
Can you explain what the alkaline one means in relation to my Sarcoid? Also, where can I find the information about stuff like this is detail?
Thanks again
Eileen
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-26-03 13:15

Eileen,

You do not need to fast for the D-metabolite testing. You may be told to fast for the ACE test. Angiotensin-converting enzyme (ACE) is found in high concentrations in lung capillaries and in lesser concentrations in blood vessels and kidney tissue. Its primary function is to help regulate arterial pressure by converting angiotensin I to angiotensin II, a powerful vasoconstrictor. There is a high correlation between elevated levels of serum ACE and sarcoidosis, but it can be within the normal range even though you have active sarcoidosis. Therefore, it isn't as effective to diagnose as it is to monitor the effectiveness of your treatment. It's a good idea to have it done with your D-metabolite testing.

Your triglycerides and alkaline phosphatase are within normal limits indicating little tissue or liver damage. Information about laboratory tests can be found on some online sites and in a clinical lab test medical book.

Hope this helps,

Meg
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-26-03 13:25

Lana,
The dosing of Biaxin (Calrithromycicn) is truly a science, as it has non-linear pharmacokinetics. Start off at what doc recommended (I suspect it was 2 of your tablets a day), and if it is not giving you herx talk to doc about doubling that.

If it does give significant herx then take the following day as a rest day to give the tissues time to leach out the cytokines before you hit them again.

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-04-03 17:21

Trevor or Meg
I had my bloodwork done again before starting the Benicar and I am still waiting on my 125-D. I also had not fasted so I don't know if that affected my ACE results or not, but the Ace was 69.8 and my 25-D was 14. The end of January blood work results were 125-D 33 the D-25 23.
How is this looking for me? I am experiencing much dizziness tonight, but my BP is fine at 113/74. I don't know if this is the medication or anything with a Herx. What do you think?
Thanks
Eileen
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-04-03 19:07

Dizziness is gone. It left about as fast as it came..weird.
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-04-03 19:29

Eileen,

You've been taking the Benicar for just a few days. If your body is used to an elevated 1,25-D, as the Benicar reduces it, you may be experiencing withdrawal symptoms. These are neurological in nature like the dizziness you mention. Did you feel more like you were intoxicated-woozy, spacey, cottonhead? That is related to a change in 1,25-D and can happen as it goes down suddenly with the Benicar (remember Linda's 1,25-D plunged by 1/2 in just 2 weeks). It can also happen when it goes up with a D-surge due to Herxheimer or Vitamin D-exposure.

Meg
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-05-03 04:04

Good morning Meg,
I have not experienced any wooziness or spaciness like you mentioned. The dizziness lasted for about an hour/hour and a half and then woosh! it was gone.
Could you explain about my D and Ace? Is it a good thing or a bad that my 25-D went from 23 to 14 within a month? Also, what does the 69.8 mean with my Ace? I have never had that done before. Does not fasting affect the ACE numbers? If yes, by how much?
How often should I have my D 125 and 25 checked after this?
Thanks
Eileen
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-05-03 05:39

Eileen,

Your lower level of 25-D is likely to be due to a lower intake of Vitamin D, assuming you've been avoiding supplements and daylight. I know the ACE is sometimes done fasting but not always so I'm not sure if it's really necessary. My first ACE was nonfasting and 2 months later I had it checked fasting. The numbers were identical. Your elevated ACE indicates sarcoidosis inflammation.

I think Trevor recommends retesting D-metabolites after 3 months of treatment although it wouldn't hurt to test more often. The 25-D goes down slowly because it is stored in your fat cells and can take months to deplete. The 1,25-D will be fluctuating during treatment with antibiotics due to Herxheimer but should have come down significantly after 3 months of treatment.

Since your blood pressure wasn't low when you had the dizziness, it was most likely a change in your 1,25-D level.

Meg
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-05-03 06:34

Thanks Meg

 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Fernando (---.red.mundo-r.com)
Date:   03-05-03 12:07

Dear Trevor,

My wife has finally got the Vit D and ACE levels:

25 D: 13 ng/ml

1.25 D: 38 pg/ml

ACE: 28.2 U/L

Serum calcium: 10 mg/dl
Serum "fosforo" (I donīt know in english): 3.93 mg/dl

Urine Calcium: 6 mg/dl
Urine Calcium 24 H: 294 mg/24h
Urine Volume 24 h: 4900 (normal range is 600-1600, but I donīt know if itīs relevant)

She has lost 8 kg (almost 18 pounds) during the last year. She has no fat stored. Could this be the reason of her low 25 D level?

Though the 1.25 D level is not very high (38), the D-Ratio is 2.92. Could the intake of ciclosporine be involved in the low level of 1.25D, like the prednisone? (last year she was only 4 months taking prednisone, in summer, but was 7 months on ciclosporine).

We are going to discuss the results with the doctor next monday. Iīm pretty sure he will say that are normal levels, but if I have understood all I have read in these pages, 25D level is very low and 1.25 D is above average. Could it be any other reason for this?

She is better now than she was in september and october (after summer), but still with fatigue and somnolence, irritability, photofobia, and no explanation (as oculist says) for the visual loss.

If there is no risk asociated to the intake of ARB, Iwill try to convince the doctor.
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-05-03 12:27

Yes, Fernando. It is good to hear from somebody in sunny Spain
The reasonable 1,25-D level (84% of people would have lower values) is being generated from a low level of 25-D (but quite a normal level for sarc patients) of 13 ng/ml. The energy in this generation is high, yielding a D-Ratio of 2.92, which certainly shows active inflammation, but about the average amount amongst the SarcInfo folks. Serum Calcium is a little high, but probably within range. It is good that the urine volume is high, that will help clean out the kidneys. Her ACE is not saying anything interesting.

If she hasn't had cyclosporin or prednisone for 3 months they should have cleared her system by now.

Yes, I can imagine she is feeling bad. A good 1,25-D level for a sarc patient is closer to 20 pg/ml, as we can't control the surges as well as a normal, and it is best to start off a little on the low side...

You didn't mention her blood pressure? - Doc tends to get fixated on that when prescribing ARBs. The ARB is a good way to go, and don't forget to ask Doc for the Minocycline 50-100mg every other day (probably best to let Doc give you a 'normal' dose, 100mg a day, which is several months supply for a sarc patient...)

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   03-05-03 12:29

Hi Trevor,
I finally received my lab report:

Vitamin D, 1,25 dihydroxy 69
Vitamin D, 25-hydroxy 25

I have not discussed these results with my doctor yet. I received a copy of the results from the nurse. My ACE levels were not tested-they never were elevated even during diagnosis.

Just to remind you-I was diagnosed four years ago with acute stage III sarc. Stopped taking pred in September after four years. Stopped calcium supplements with D in the summer and have tried to eliminate sun exposure and dietary exposure to D since then.

Currently my breathing is good but I suffer from joint pains, light sensitivity and occasional neuropathy.

I assume I now have to start ARB therapy and then minocin treatment. Do you concur?

Thank you for your time and advice!
Karen
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-05-03 12:43

Hello my sarc friends
Okay, this is interesting.. I got the final results and now I am trying to figure out what the heck is going on. The end of January as I told you my 25-D was 23 my 125-D was 33, never had an ACE.
Now I have had them done again and my ACE was 69.8 my 25-D was 14 and my 125 D was 40.
Okay, why did it go up? I know why the D-25 went down due to cutting out the sunlight and D foods, but why the other one?
Thanks
Eileen
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-05-03 12:45

Karen,
Hmm. D-Ratio of 2.76, similar to that of Fernando's wife Same comments apply. But in your case you still have a while to wait until the 25-D you got in those D supplements leaches from your bodyfat. It takes about 3 months to cut in half each time, so, since you need to get down around 12 ng/ml, or so, it could take another three months to get there. The ARB seems to force the D-Ratio down, usually quite drastically, and is the best way to go if you don't want to wait 3 more months

You might not have too much herx without the ARB, but try to persuade Doc of the advantages of using ARBs given that you can't get that 25-D out of your system. Clearly your 1,25-D is well above the 45 pg/ml upper limit in Merck, so that will help get Doc's attention. It will also help to get his attention if your calcium is normal, because most docs think that high 1,25-D means high calcium It's called "confuse-a-doc" (did you ever see that Monty Python sketch "confuse-a-cat"?)

With eye involvment you might be best to ask Doc about Bactrim DS at the outset, as it penetrates the eyes and ears better than the Minocycline. Don't use it until after the Minocycline has done its job, but since you porbably don't see doc every day, and since he is likely to be suitably "confused" at this time, might as well ask him/her about both antibiotics at the outset

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-05-03 13:34

Trevor,
Why don't you just write a book with all of the information? I know I would buy it! It would be much easier than having to run through all the message threads trying to find my answers

 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-05-03 14:15

Eileen,
A couple of questions come to mind. Did you change any medications recently? Well, maybe only one question right now...

These numbers are more in keeping with what I would like to see. Your D-Ratio of 2.86 and ACE of 69.8 are at least in agreement.

The measurement of 1,25-D is a difficult one. the blood has to be assayed while fresh, or on dry ice. It is easy to slip up and get a lower value than you should. Also, the blood has to be sent off to another lab, sometimes in another state. Sometimes the vials can get mixed up.

See, now you have lots of things to think about But at this point just focus on getting that herxheimer in place, preferably with ARBs, and watch all those numbers consistently drop back to normal.

..Trevor..
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-05-03 14:57

Trevor,
I have a Quest labs here in town that I went to and it went to their other lab that is about 20 minutes away.
I have been on the Minocin I think for almost 3 weeks now. I started Benicar right after I gave my blood last week, so I have been on this for a few days. I am taking 40 mg every 8 hrs.
I have a strong metallic taste and joint pain today, and I have stayed out of the sun, am wearing my Noirs and not eating any vitamin D foods. I am also having dizziness on and off.
I had noticed you telling another person to have their 125 checked monthly to make sure it is going to go down and not up. When is it too high, and if it gets to the point where it isn't going down, but up, what do I do then?

One more thing. I had a mammogram this a.m due to a lump that was discovered in my right breast on the inner left side. (center chest area) After the radiologist looked at my results, they had me stay to have an ultrasound done as well. My doc said he was going to see if he could find out anything, but there is a good chance that they will want a biopsy done.
I saw another thread about false positive cancer results? Is that only with the lungs, or other areas?

Thanks Trevor
Eileen
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Eileen (---.client.attbi.com)
Date:   03-05-03 15:02

Never mind about the lump. Doc called the moment I hit the send key. It is a benign cyst. I am fine there.
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: E (---.brndml01.va.comcast.net)
Date:   03-05-03 18:59

Trevor, I have a question about your last reply to Eileen - you stated that her D-ratio was 4.98, but I'm confused how that calculates .. I get a D-ratio of 2.86 from her recent D-tests, and 1.43 from her previous D-tests. What have I missed? Forgive me if I missed something - as I read these messages from other Sarcoid'ers, I am constantly calculating, and reading how you respond to them, as it may be relevant to me. Thanks .. ~E
 
 Re: Archive - My Vitamin D and ACE test results are back!
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-05-03 19:15

E,
Thanks for pointing that out. I had accidentally divided her ACE value instead of the 1,25-D -oops
..Trevor..
ps: the following message is not meant for you:



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Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
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  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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