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-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.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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 Do not post here: Archived Hypervitaminosis D Symptoms
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-28-03 14:11

All Th1 inflammatory diseases are characterized by dysregulated Vitamin D metabolism. This results in an elevated level of the active metabolite-1,25-Dihydroxyvitamin-D. This is known as hypervitaminosis-D.

Hypervitaminosis-D is characterized by:


Fatigue
Asthenia (loss of strength and energy)

Insomnia (difficulty falling asleep or staying asleep)
Somnolence (sleepiness)

Paresthesia (numbness, tingling, burning, prickling)
Facial palsy (paralysis; usually unilateral)

Metallic taste
Irritability
Mood or mental changes
Memory loss
Inability to concentrate
Dysphonia (difficulty speaking)
Dryness of mouth

Arthralgia (pain where there should be no pain)
Podagra (pain in the great toe)
Muscle, bone and joint pain (ankles especially)
Muscle cramps
Tightening of throat muscles, difficulty swallowing
Muscle paralysis
Muscle problems leading to difficulty breathing (dyspnea)
Stiffness
Loss of muscle control
Loss of balance
Uncoordinated movement
Dysphagia (difficulty swallowing)

Vertigo (a feeling of spinning)
Dizziness, lightheadedness
Feeling of intoxication
Irregular heartbeat

Loss of sex drive


Tinnitus (ringing in ears)
Hearing loss
Nasal/sinus congestion

Diarrhea
Constipation
Cloudy urine
Abdominal discomfort
Nausea/vomiting
Anorexia (loss of appetite)

Photosensitivity (intolerance of light)
Irritated eyes
Redness of eyelid or lining of eyelid
Conjunctivitis (redness or discharge of eye)Cloudy-looking eyes
Runny nose
Frequent, Excruciating Migraines
Headaches (continuing)

Hyperthermia (feeling too warm)
Night sweats
Cough
Pruritus (itching skin)

Hypercalcemia (excessive calcium in blood)causing weight loss and anemia
Bone demineralization (osteoporosis)
Calcium deposits in soft tissues of lungs, heart, blood vessels, renal tubules
Kidney stones

Impaired renal function causing:
polyuria (excessive urination)
nocturia (excessive urination at night)
polydipsia (excessive thirst)
calciuria (calcium in urine)
azotemia (nitrogen in urine)
proteinuria (protein in urine)
Irreversible renal insufficiency

Late symptoms of severe overdose: high blood pressure, high fever, severe stomach pain

The effects of administered Vitamin D can persist for two or more months after cessation of treatment.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Bonnie (---.dialup.mindspring.com)
Date:   05-01-03 23:36

Thank you for your information. I think my loss of hearing is mostly from chronic congestion. It comes and goes.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-02-03 02:58

Bonnie.
My ear was hit by a fragment of an anti-tank rocket about 30 years ago. It was blocked by blood and stuff for a year, and the hearing never fully returned. After I turned 45 I noticed a Tinnitus, or ringing in the ears, that started to get worse as the years went by.

After about 6 months of Minocycline therapy the Tinnitus has disappeared, and I now have full hearing restored to my left ear. I just bought a new MP3 player the other day - it is wonderful that the years can roll back so completely as you beat the CWD bacteria causing your internal inflammation.

..Trevor..
ps: most folks in the community are not hypersensistive to the CWD bacteria, it doesn't make them ill. A small percentage, maybe les than 10% develop illnesses ranging from fibromyalgia to Lupus and Sarcodiosis.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: SteveUK (---.server.ntl.com)
Date:   06-04-03 08:39

Hi Trevor

I was just going to ask if a loss of hearing (or an effect similar to putting a blanket over a loud speaker as I like to refer to it) was likely with sarcoidosis / minocin as I still try to pursue my semi-pro life as a musician I have had my guitar and amplifier in pieces many times in the past few months trying to find out why things don't sound as clear anymore.

But I think you've already answered my question.

many thanks and good luck with the continued research.

Steve

 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Karen (---.wlfdle.rnc.net.cable.rogers.com)
Date:   08-19-03 19:05

Thanks, ladies.
I am so happy to hear that yeast may not be a problem.

I checked the list of symptoms, and to be honest, all I can report having is the sinus congestion,frequent yeast infections, which I have had for years, as I had many antibiotics to treat the sinus infections, the very recent leg cramps sometimes at night and cloudy urine if I don't get enough liquids into my system. Certainly not anything that would make me think that anything was too wrong within. Oh yes, I have had two or three episodes or right side facial numbness over the past decade, but a CT scan revealed nothing and it disappeared of its own accord.
Most of the time, if I get enough sleep( we are real late owls - a bad habit, I know), I feel top of the pops and have the energy of a person half my age. I can walk for an hour at a fast pace with no problem, despite lung involvement on the CT scan. We will have to see what the lung tests show.

Wh
 
 PREDNISONE
Author: LINDA PLEMMONS (---.s484.tnt3.atnnj.pa.dialup.rcn.com)
Date:   08-20-03 09:55

MY ACE LEVEL SEEMS TO BE GOING HIGHER ONCE AGAIN, EVEN THOUGH IT IS WITHIN RANGE. I KNOW IT IS BETWEEN 9-67. TODAY IT WENT UP ANOTHER 15 POINTS TO 63.
I HAVE A PULMINARY DOCTOR WHO WILL ONLY USE PREDISONE, WHAT DO I DO? HE IS CUTTING MY PREDNISONE EACH TIME I GO, BUT WILL SAY NOTHING TO ME ABOUT WHAT WILL BE DONE AFTER HE CUTS ME OFF ALTOGETHER. I HAVE MUSCLE WEAKNESS DOWN MY ARMS AND LEGS, JOINT PAIN, FATIGUE AND TIGHTNESS IN MY CHEST. I ALSO DEVELOPED A SWALLOWING DISORDER, WHERE THAT CAME FROM NO ONE KNOWS. I CAN ONLY DRINK THINGS WITH A NECTAR SUBSTANCE. I HAVE ENDED UP IN THE HOSPITAL BECAUSE OF THAT.
THE SWEDISH REPORT THAT MEGAN SUGGESTED, MY DOCTOR DIDN'T BUY, SEEMINGLY.
WE DON'T KNOW WHAT TO DO ANYMORE. WHAT ARE THE SIDE EFFECTS OF PREDISONE?

LINDA
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.dsl.dock.net)
Date:   08-20-03 09:59

Linda,
Welcome to SarcInfo,
Please read the Tutorials at the top of each page. There are also Papers you can print out for your Physician.

Browse around the 7500 messages on this system. I am sure you will find that others have already been in exactly the situation you now find yourself, and can tell you how to escape from it.

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Sally Provo (---.ras.pdx.edu)
Date:   08-20-03 12:04

I have MANY and MOST symptoms of hypervitaminosis, but yesterday when I went to my rheumatologist armed with this website she went so far as to say I need calcium and vit D supplements. She poo-pooed most of these ideas, but did write me a script for minocycline. No Benicar. Can I do it this way-- the hard way I suppose. She said that none of the papers included here were from "respected" journals, but I could tell that something interested her. She gave me a choice between plaquenil and minocycline.

I'm going off pred--at 10 mg every other day now. I am 37 and have bilateral hilar adenopathy, lots of granulomas in my bronchial tubes, elevated liver enzymes, and have had uveitis, bell's palsy, severe joint pain, a fever for nearly a year, and some insane fatigue.I had a bronchyscopy in May and confirmed sarc.

Strangely, I don't feel like the sun gets to me. I live in Portland, Oregon, and I was much worsein the winter--no sun to speak of.

Any thoughts appreciated. I do feel like I"m on the "bumpy" road to wellness, but I'm scared to take my first minocycline.

Warm wishes,
Sally
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Marypat (---.proxy.aol.com)
Date:   08-20-03 12:55

Sally,

I always have some lag time between sun exposure and the extreme fatigue that seems to be the first big sign that I'm going into another 'exacerbation' with this disease.

We went on a cruise in mid January this year, the extreme fatigue began mid to late February, and then of course all the other signs of an exacerbation came along.

Marypat
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Tammy (---.cox-internet.com)
Date:   08-20-03 16:38

Hello,
When I was in San Antonio on vacation a couple weeks ago, I was out in the sun a lot. The sun affected me the same day......BUT I believe the severe residual side-effects hit me the week after. My herx also increased. It may seem not to affect you, but just trust me it will!...eventually. Of course this only my opinion...hehe! I found out the hard way! Y'all have a great night.
~Tammy~
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Margo4 (---.212.intrex.net)
Date:   08-20-03 18:40

We didn't notice the effects of the sun on my daughter until she stopped dietary sources of vitamin d and stayed out of the sun. The effect then became quite noticeable. I think the vitamin d levels were just too high before for the variation from sun exposure to be that obvious.

Margo
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Linda Hassfurther (---.crtntx1.dsl-verizon.net)
Date:   08-30-03 14:34

I have the name and number of a Doc who I think will work with me. I have been staying out of the sun for 9 days and my symptoms are worse. Could this be the herx effect? I am calling for an appt. on Tuesday to try and begin the minocycline and benicar treatment. I was scheduled for a wrist biopsy- but broke my foot in 3 places and couldn't walk with crutches and stitches in my wrist. I have looked up the symptoms for hypervitaminosis and have some of them. Especially the metallic taste in my mouth. My other big symptom is swelling in the wrists, knees and ankles- my wrists looking the most "granuloma like" (?). Trevor suggested that rather than go through surgery- try the minocyline and benicar first (a less aggressive way to an actual diagnosis.) I appreciate greatly this forum and everyone who is so caring!! Pretty long winded- but basically my question is - would staying out of the sun and avoiding vit. d foods and not taking vitamin supplements trigger a herx reaction?
Linda H
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   08-30-03 18:33

Hi Linda,

It's difficult for me to answer your question without knowing exactly what you mean by 'staying out of the sun'. Trevor has said "It's almost impossible for most sarcoidosis patients to realize that exposure to sunlight is making them ill because the time taken to generate monocytes and for the 1,25 dihydroxyvitamin D3 to clear your body, is a matter of days, not hours. If you are exposed on Monday you will still be suffering on Wednesday making it very difficult to correlate cause and effect."

These topic threads on SarcInfo will help you understand sunlight and vitamin D in sarcoidosis:

If you have Sarcoidosis, you must stay out of the sun
Protecting your eyes in sarcoidosis
Vitamin D levels in food

It will take longer than nine days for you to learn to identify your feelings/symptoms and you will not experience Herxheimer reaction until you take minocycline. Information about Herxheimer reaction is found here and here

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Linda Hassfurther (---.crtntx1.dsl-verizon.net)
Date:   09-01-03 23:54

Thanks for your reply. I have been having swollen joints, and pain in my arms, along with swollen fingers, and pain in my arms when sleeping at night. My ace scores were 84 and 85. This has been going on almost 5 months. Prednisone relieves the symptoms but I think resulted in my broken foot. By staying out of the sun I mean not going outside at all during the day. Some after 7:00 p.m, when it is cloudy. This semi-diagnosis from a rheumotologist and a definitive diagnosis of MS in 1984 through several MRI's is starting to weigh heavily on my psyche. I am tempted to go back on the prednisone for some relief, but only as a last resort. I just want a doc who will try the protocol you are suggesting. Tomorrow I will try again

Linda
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-02-03 00:05

Linda,
Focus on getting your D metabolite bloodwork done. Most health benefits cover the tests for weak bones, suspicion of osteoporosis. And you just had a broken foot...

Keep smiling,
..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   09-02-03 20:35

Hi Linda,

It sounds like you've been doing a good job of avoiding sunlight. Be sure your curtains are drawn and if your indoor lighting is bright wear indoor NoIR sunglasses, especially when doing computer work. If your level of 1,25-D is quite high, simply avoiding vitamin D may not result in an improvment of symptoms. The key is to find out what those levels are so you will have some idea of the amount of sarcoidosis inflammation your body is coping with. High levels should persuade doc to order Benicar and then the minocycline.

Don't give up. Getting the right treatment may take a little effort but it will be worth it.

Meg
 
 natural spectrum lights
Author: Alison James (---.proxy.aol.com)
Date:   09-22-03 23:56

These are to replicate natural sunlight and I have several parrots and I have the lightson them for most of the day to provide a natural sunlit room for birds. Has any one found this to be a problem with the sunlight issue and Sarcoid?

Alison James
 
 Re: natural spectrum lights
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-23-03 07:22

Alison,
If you have Sarcoidosis, any bright lighting will be making you ill. You cannot afford to have those parrots in the same area as you live unless they can tolerate the semi-darkness that you need to look after your (hypersensitive) eyes, and the brain that they are connected to.

Once you have cured the sarcoid inflammation your eye sensitivity will return to normal and you will be able to enjoy the parrots again.

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Evelyn Gernaat (---.imt.net)
Date:   10-18-03 14:11

Hi,
I've been reading everything on this site. I was diagnosed with Sarcoid about 1 12 years ago. Trying to stay off prednizone, but have lately worsened with neuro symptoms of tingling and numbness. I have been wearing sunglasses for 3 days and notice a lessening of symptoms. Can anyone tell me what foods have Vitamin D so I can avoid them.
Thanks for the help!
Evelyn
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   10-18-03 16:08

Evelyn,

Humans manufacture more than 90 percent of their vitamin D as a response of the skin and eyes to sunlight or any bright light. So you need to be concerned about avoiding sunlight, shielding your skin and eyes from sunlight in the daytime.. even indoors.. when you are sensitive to sunlight.

Since so many foods and vitamins are supplemented with vitamin D, though, it is best to review everything that goes into your mouth to ensure there is no extra D there. There is another topic discussing vitamin D in food.

Belinda
 
 Finding a doctor
Author: Rose (---.famvid.com)
Date:   01-02-04 01:05

Hi,
I was diagnosed with sarcoid about 21/2 yrs ago but never treated for any of my systoms. The Pulmo. doc I was seeing kept telling me the pains I was having were not from scaroid. Since then I have found out I had it in the spleen and liver. Because of a mistake made by the hospital my spleen was taken out. When I tried to sue the hospital this doc now says that the spleen would have had to come out at some time. I will not go back to him and I can't seem to find a doc who knows much about sarcoid or treating it with antibiotics. I am starting to have symtoms again and need to find a doc. I lost my insurance and a new company won't cover the sarcoid so if you know of any research facilities that might take my case that would be great. I read about hypervitaminosis D symtoms and find I have a lot of these. I also fear that my lungs are more involved as well as the heart. Any help is appreciated.
Rose
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-02-04 19:03

Hi Rose,

I'm sorry to hear your unfortunate story of misdiagnosis and inappropriate treatment. This happens far too often.

You are on the right track in looking for a doctor who will help you with the Marshall protocol. Do you have a Primary Care Provider? Most of us have had the best luck with doctors who do not consider themselves specialists. There are several topic threads on SarcInfo about finding a doctor and you will find lots of suggestions there.

If you'd like, I can email you a list of doctors who have experience treating Rheumatoid Arthritis with antibiotics. They are more likely to be open-minded to trying something new.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: ALICIA (---.tstt.net.tt)
Date:   01-17-04 06:02

I had Bell Palsy in January 1998 and my face never came back as it was. That same year in May my eyes began bleeding to the back and was given laser treatment for it. All my blood work showed negative, there was nothing wrong with me. Today six years later my eyes have started again but there is an infection (I cannot remember the name given) that would not go away and the doctor has sent me for a series of test again and told me I have the sarcoid systems. Whilst reading the articles on this site I see where I have some of the symtoms. I need to know what foods to avoid and what vitamins to use.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: ALICIA (---.tstt.net.tt)
Date:   01-17-04 06:17

Does it affect me getting pregnant. I have trying for the past three years.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date:   01-17-04 11:01

Rose,

I also had my spleen removed unnecessarily as it was covered in lesions and the drs at the Cleveland Clinic felt it could be lymphoma. The 'something in my lung" which showed on the PET scan was overlooked entirely by the pulmo there. I, too should have sued her, but it still would not have brought my spleen back and if nothing else, the drs are now giving talks on my case and won't be in such a hurry to operate on any future such cases, so at least I may have saved some organs.

It seems so unfair that you have lost med coverage for sarcoid. I would fight that one, if you can. I also have not been on any treatment, despite having raised liver enzymes and lung involvement without symptoms, but after months of frustration, I am finally going to start the Marshall Protocol after my lung CT early Feb. I have, at last found two drs who agree with it and who will help monitor me. One is an alternative gyn, who gave me the mino script and the other is my ENT who wrote one for Diovan ( I live in Canada and we can't get Benicar).

So, my advice to you , is too keep on plugging away to find a dr who will help you. It may take time, but I am sure it will be worth it in the long run. Leave any dr who is negative about what you want to try with your illness and your body. It has taken me a while to learn that, but I now am doing what I feel is right for me and I hope that someday this protocol will be the gold standard of sarcoid treatment and that nobody will have to fight so hard for it.

All good wishes for better health this year.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-17-04 15:24

Alicia,

This thread discusses sarcoidosis and pregnancy. There are lots of posts there discussing how sarcoidosis affects pregnancy and vice versa.

Belinda
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-17-04 19:30

Hi Alicia,

Welcome to SarcInfo. It certainly sounds like you have had sarcoidosis for a long time. I hope that included in the tests your doctor did was the essential D-metabolites.

NATURE'S LIFE SOFTGEL WITHOUT VITAMIN D TABLETS are on these 2 sites:

Affordable Nature's Life

Natlife

EveryDay™ Supplement without Vitamins A & D is on this site:

Kirkman Labs

I think you'll find most of the information you need about foods containing vitamin D in this thread

There is a search feature on the site where you can type in words and find specific intormation. Be sure to click on 'all dates' so you will get the most complete search.

Let us know if you have any more questions that are not answered in the patient tutorials and starred threads.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Jim Sellers (---.rjrt.com)
Date:   01-20-04 10:55

Trevor,

MSNBC has an article today discussing Vitamin D and sun exposure. The interesting part is it mentions that sunscreen may block vitamin D production. What is your opinion on this idea?

Thanks,
Jim
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-20-04 11:00

Jim,
MSNBC is totally incorrect.
Sunscreen has no effect on Vit D production, even in healthy individuals.
take a look at
Clinically prescribed sunscreen (sun protection factor 15) does not decrease serum vitamin D concentration sufficiently either to induce changes in parathyroid function or in metabolic markers and also The effect of regular sunscreen use on vitamin D levels in an Australian population. Results of a randomized controlled trial.

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   01-20-04 11:25

Hi Meg, was just browing through this topic and had a question.

Since having my D levels checked, my #'s were as follows:

14.7

10.4

21.7

13.4

In looking at those #'s, bear in mind this: the first number was before I began any of Trevor's treatment whatsoever. In fact, at that time, I was taking Fish Oil supplements (based on Mercola's website); eating lots of salmon, fish, eggs, cereal, milk and in the sun whenever I wanted.

The highest # was in June and I had been working out in the sun in my garden for at least 3 months by this time. This last # was in October after the flowers had died off.

I've always said that the sun has never bothered me and really, I'm not so sure I'm noticing any difference either with or without D foods. Haven't had but a glass or two of milk in a year now and no cereal, although I'm eating eggs again regularly.

Just curious as these #'s don't seem to make sense to me with respect to the D problems. I understand about the 1,25D levels being too high and that's not good, but if these #'s above are so low, should I be adding D instead of eliminating it?

Jan Lewis
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-20-04 11:31

Jan Lewis,

Could you please clarify the results of your vitamin D tests so we can understand? Are the numbers you posted measure of 1,25-dihydroxyvitamin D or for 25-hydroxyvitamin D? You should look at the actual lab test results to find out.

Belinda
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-20-04 11:35

Jan,
Despite what Dr Mercola believes, 1,25-D is the active metabolite in the body. It binds to the VDR, while 25-D does not. I think he may be confusing some of the less important metabolites (such as 24,25-D) which are also biologically active, but of lesser importance.

You only need to supplement your D intake if your 1,25-D is consistently running low, and if the kidneys cannot correct it.

Actually, it is seeming more and more as though the only conditions under which this happens are disease conditions, and the increased suplementation is of little help, anyway...

Take a look at some of the 1,25-D references I cite in this Chest article I wrote (look at the second half of it). They show the power of the 1,25-D hormone (in Cancer, AIDS, etc)...

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   01-20-04 12:05

I'm not following any advice from Dr. Mercola....you may have misinterpreted what I meant here. Those #'s above are just my 25D levels. Which are extremely low #'s correct?? What I was saying is even with vitamin D supplements and foods that I was eating regularly in 2002, (but not since Feb. of 2003), my D #'s were low. And without the D foods, the #'s are about the same. I read about how sick people get in the sun and so forth, but honestly, I have never felt like that except maybe if I'm in Florida. But, in KY, I work in the sun for hours on end and never have any change in anything. I'm just trying to work out in my own mind here how D foods change anything. Now, my 1,25D level was higher last time than any other test I've had over this last year. And this was with 10 months of antibiotics, no D foods or supplements. The 1,25D level was actually lower when I was taking the D supplements and eating D foods...

It's just a mystery to me.

Jan Lewis
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-20-04 12:16

Jan,
Well, my own 25-D numbers have been less than the assay minimum ( <7ng/ml) for the last 6 months or so, and my kidneys have been maintaining my 1,25-D right in the middle of the 'normal' range. So the concept of "low" 25-D values seems to merge with "unmeasurable" once somebody begins to fastidiously control their Vit D intake.

What I find fascinating is that I can keep these low values of 25-D even though I move around totally oblivious of solar exposure now. I drive long distances without gloves, and without noticing any ill effects. The solar sensitivity has gone away. Just like yours. Maybe your use of the abx for such a (relatively) long time is what has normalized your sensitivity too. I know I used to have to clothe up and wear leather gloves when I went out in a car... those times are long gone, thank goodness.

I had a letter from Dr Tony Norman (vitamind.UCR.edu) about 12 months ago, where he alerted me to his belief that the keratinocytes in the skin manufactured 1,25-D without needing to go through the intermediate 25-D metabolite. This would explain why I have normal solar sensitivity (and get a nice warm glow after being in the sun) yet my 25-D remains at unmeasurable levels, regardless of how much solar exposure I get. There is a lot still to be learned about how the body's D metabolism works - I am sure we are still just scratching the surface.

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Jan Lewis (---.lgeenergy.com)
Date:   01-20-04 12:23

Ok. So, if my 1,25D level is really high (68.2), then how do you normalize it? Bear in mind I haven't had a test redone since October.

Jan Lewis
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-20-04 12:33

Jan,
Well, I normalized mine by getting rid of the sarc inflammation which was making the 1,25-D to excess. That took 18 months of creative (multiple) antibiotic therapy - and lots of experimentation (hottubs, etc).

The antibiotic you have already used obviously got rid of the bugs in your skin, but maybe not elsewhere in your body. That's why I believe Z+M and even the three abx combination are needed to finish off any sarc therapy.

The bacteria in the lungs seem to be the hardest to kill (or, at least they were in my case). I guess they have to live in an aerobic environment, and that takes a different adaptation of species. It took me 15 months to find an abx combo that attacked the bugs in my lungs, and when they started dying I felt worse that I ever did - even at the height of the disease - at least until the 4 hourly (emergency) Benicar got some semblance of control back into my body - that took about 10 days of misery...

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: bpeck (---.dialup.mindspring.com)
Date:   01-20-04 14:32

For 27 years, since the acute onset of my disease I have had
a problemn with exposure to the sun.
Prior to that onset, no amount of sun ever bothered me.

AT the worst, I'd develope what looked like pea to walnut size swelling,
red and painfull (usually in the exposed large areas like the chest and top of shoulders.... and this could be accompanied by severe nausea (with vomiting).

AT best, I'd get tiny tiny bright red spots (but they were flat ) or
a pin point rash.,, and maybe a head ache.

If heaven forbid I ever burned - it acted differenly - the skin just staying inflammed and red untill it faded away (that'd take about 10 days). - from 1975 thru 2002 I never ever had peeling skin.

Ibuprofen and Plaquenil made me feel better.

Now since I found out I had Lyme, and went thru abx therapy (and anti-malaria
therapy) and reduced my D... I do not have ANY problem with he sun.
(and my other symptoms are 99 % better).

Post abx, as an experiment, I let the tops of my feet get sun burned-
and they peeled in 2 days - I was happy to see that reaction return after
NOT being there for over 25 years.

My sun tolerance seems to be what it was PRE 1975.
Which at first totally blew me away.

Barb
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-20-04 15:30

Jan,

If I'm understanding you correctly, you're wondering why your 25-D was low when you were ingesting lots of Vitamin D and getting a lot of sun exposure. The answer is in your high 1,25-D, indicating a lot of inflammation. That level was high in part because you were providing lots of 'fuel'. You had so much granulomatous inflammation that your tissues were using the precursor 25-D at a very rapid rate. Too rapid to keep the level high despite your Vitamin D intake. This is why the initial D-ratio, before patients have taken corrective measures, is sometimes so high.

You say that the sun never bothered you but I believe that you reported a lot of pain that you thought was due to sarcoidosis. It isn't always possible to recognize the effects of sunlight exposure immediately. It sometimes takes a long period of abstinence and then reexposure to feel those effects directly.

Avoiding all forms of Vitamin D is an important part of the Marshall protocol. Until your sarc inflammation is minimized by the elimination of the triggering bacteria, supplying your inflamed tissues with Vitamin D promotes the formation of Hormone-1,25-D. This in turn results in symptoms of hypervitaminosis-D.

Measurement of the D-metabolites is most critical before treatment initiation to provide information about the level of inflammation. If the treatment proceeds per protocol, you can expect to see continued low 25-D because you will be avoiding Vitamin D, not because the inflammation is still running rampant. Your 1,25-D will fluctuate because the Herxheimer reaction causes a temporary increase in production. But at the same time, the Benicar interrupts the inflammatory cascade bringing that level down. Thus subsequent D-tests are not as informative as that initial level.

As your bacteria are eliminated you will eventually see a normal 1,25-D level (and symptom resolution), even with provocation by antibiotic combinations. This is when you can truely go out in the sunlight without inflammatory ramifications. Benicar may be necessary long-term to counteract your sarc tendency to inflammation. And periodic antibiotic treatment may be necessary to neutralize any future exposure to cell wall deficient bacteria. This sounds suspiciously like a cure to me.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Steve Backes (---.tnt2.ij.net)
Date:   02-14-04 05:05

Is one expected to experience the same set of symptoms each time their vitamin D levels are high? Or, might a set of symptoms appear for a period of time only to not appear again?

I ask this as I prepare to discuss hypervitaminosis D experiences with my doctor. I left copies of the tutorials with him before meeting with him this past week. He said he would discuss them with a colleague who had received a sizeable grant to study the cause of sarcoidosois. He's still not convinced I have anything more than pulm sarc that started with EN.

I had a couple months of facial numbness a number of years ago that resulted in my seeing my dentist, GP, and a neurologist but no final diagnosis. Since then, I may have noticed numbness a couple of times but never for that length of time. If this was sarc related, did the cause go into remission? Or, could it be related to a seldom reached high?

I've also often experienced many of the other symptoms including leg cramps and headaches but not always at the same time. Can headaches, leg cramps, etc. be related to sarc if they only occur for short periods (or less often) while others occur regularly for longer periods? I realize there are many other non-sarc related causes for these symptoms so I don't want to get caught attributing everything to sarc when the facts don't support it. Fatigue is being blamed on a sleep disorder rather than sarc.

Steve
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-14-04 08:18

Steve,

Welcome to SarcInfo. It's pretty incredible how many symptoms you have that no one realized is due to sarcoidosis. You will be amazed at how quickly you can resolve some of them just by lowering the level of 1,25-D. The rest will take longer and require long-term antibiotic therapy. But you can really put your sarcoidosis into remission with the Marshall Protocol.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Steve Backes (---.tnt2.ij.net)
Date:   02-14-04 08:45

I began thinking I'd chosen the wrong career (Quality Assurance Technician in a dairy processing plant) when I began suffering periods of lactose intolerance. Now I find the vitamin D may be a bigger problem. I'm required to "taste" at least 15 samples of vitamin D enriched milk daily. I'm also the one who fills the reservoirs with concentrated vitamin D. I have on occasion had the accidental spill on the arms. I wonder how much can be absorbed through the skin and how fast.

On a positive note, we only add vitamin D to our bottled milk. It is not added to our yogurts, sour cream, cottage cheese, or ice creams. I did discover recently while doing a taste panel of our competitors that their drinkable kids yogurts have 10% RDA vitamin D added to each serving.

I also have that problem of living in Florida and hobbies that involve a lot of time outside with nature. I've never liked wearing sunglasses but am now trying to get used to them. The birds just aren't the same color when viewed through blue glasses.

Steve
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Denise (---.hay.dialup.connect.net.au)
Date:   03-14-04 22:25

I currently have a mouth full of ulcers. It seems my sarc has flared or I have another granulomatous disease affecting the head and neck such as Wegener's granulomatosis or Melkerson- Rosenthal syndrome.

I note that mouth ulcers are not included in the listing of hypervitaminosis D symptoms.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-15-04 00:27

Denise,

Oral lesions can be a manifestation of sarcoidosis. I can tell you that I developed oral lesions and swollen lips when my serum 1,25-D was elevated. These resolved when my 1,25-D returned to normal.

You can read more about oral lesions in these topics:
See your dentist on schedule
Skin Sarc, What does it look like?

Belinda
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Jim Sellers (---.rjrt.com)
Date:   03-15-04 12:52

Denise,
I have had mouth ulcers all of my life it seems. I found a site that suggested switching my toothpaste to one without Sodium Lauryl Sulfate and to use Listerine at least twice a day. One flavor of Sensodyne is made without this ingredient and I had to go to a Pharmacy to find it. Since I have been using the toothpaste and mouthwash, I have been almost completely rid of the sores.
Jim Sellers
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Rick (---.dsl.pltn13.pacbell.net)
Date:   03-16-04 18:38

Hi Again,

In reviewing some of the threads I am a little hazy on what are the normal levels for those with sarcoidosis? I have these target numbers from when I first started with sarcinfo.com . . . And how much of a variance?

1,25DH - 20-25
25D - 12
ACE - 25

Rick in Napa
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-16-04 18:47

Rick,
Is your 1,25-D bloodwork done through Labcorp?
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Rick (---.dsl.pltn13.pacbell.net)
Date:   03-17-04 19:57

Yes, Lab Corp in San Diego, CA.,has done all my blood work from the beginning.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-17-04 20:07

Rick,
Aha! Labcorp is the only lab which still accepts serum for 1,25-D testing without it having been frozen for transit. If the testing is delayed, or the sample gets delayed in transit, the lack of freezing leads to a lower value being read for the 1,25-D than it really is. And the value is inconsistent too. Next time can you ask that it be sent to another lab, say "Specialty Labs", in Santa Monica? Shop around and make sure the replacement lab is not going to cost an arm and a leg, though. It is important to get that 1,25-D bloodwork sample frozen...

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Donna Rains (---.proxy.aol.com)
Date:   03-23-04 10:54

Trevor, I have had sarcoidosis (pulmonary and lymphatic) for 8 years. I was in remission for 5 years, came out of remission and nearly lost my life to it last year. I was hospitalized for 3 months, then again for another month just a few months later. Doctors have been treating me most recently with methotrexate chemotherapy by injection (15 mg weekly), 10 mg daily of prednisone ( no body will no longer tolerate higher dosages) and 200 mg plaquenil daily. I have very high blood pressure contolled now by three medications: Cozaar 50 mg twice daily, Triamterene (37.5 mg/25 mg HCTZ) daily and Toprol XL 50 mg daily. I am on a long list of other meds as well (26 total).

I am better in that I am breathing better and can be home and get around now. I still have extreme fatigue, weakness and energy loss, a slight small dry cough, feelings of panic which I had never experienced before and did not realize were related to this until I read recent articles, symptoms which doctors call fibromyalgia, but I think are still the sarcoid and other typical symptoms (chest pain, nausea etc.)

I have took several of the article to my doctor and he agreed to begin treatment with minocycline at 100 mg but did not want to discontinue the other treatments I have been receiving. He said Cozaar is an Angiotensin II Receptor Blocker and left me on that as my blood pressure had finally been relatively stable until yesterday's office visit. He uses Quest Labs and sent bloodwork off for my levels of Vitamin D. On my own I began eliminating D from my diet when I first read your articles a few weeks ago. I have three questions: Will the Cozaar work instead of the Benicar? If not, which article or research should I take him to convince him to change to or add the Benicar? Are diet and sunlight the only ways to decrease Vitamin D and calcium other than something drastic like dialysis? (Inotherwords, is there anything else I should be doing?)

Since I have had such a rough time with this disease in the last year and my doctors ( my pcp/internist, pulmonologist and rheumatologist all coordinate my treatment) are hesitant to take away anything they are doing when they continue to see some improvement in my physical condition. My treatment has been like a delicate balancing act, as I am sure you have seen in many others.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-23-04 11:19

Donna,
No, Cozaar will NOT work instead of Benicar. Ask Doc to give you Benicar 40mg every 6-8 hours. You can add the Benicar without removing Cozaar, and then stop the Cozaar as the Benicar starts to do its job. Suggest that to Doc. Benicar will make a huge difference to your symptoms, and help you to wean of MTX and prednisone. Then you should work with Doc to wean off the other 23 meds.

I would delay the minocycline therapy until you stabilize the medications you are on. You will find that a Benicar blockade is all you will need to do that. I am sure you have read folks here calling it a "wonder drug". They are not exaggerating.

In particular, I would point out that the HCTZ is not helping your kidneys. Diuretics are not recommended for diabetic patients, and should not be used in Sarc, either. See what your BP looks like after you get the Benicar in place, and work down the prednisone dosage. You probably won't need the HCTZ by that point.

Doc will say that Cozaar and Benicar are the same. But that is not correct. They are marketed as the same class of drugs, sartans, but they are totally different chemical compounds, totally different in their effectiveness against the sarc microbes. I can explain to Doc why it is unique, if he calls.

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Michael Corman (---.bos.east.verizon.net)
Date:   04-03-04 13:52

Meg, you have told many people that their fatigue is caused by hypervitaminosis-D. I suffer from fatigue and somnolence. I just got my blood test back. All are well within the normal range including vitamin D, in fact, it's very low. Do you have any other ideas? The list of symptoms you provided describe hundreds of diseases.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-03-04 14:05

Michael,
There is a tutorial above called "How does Doctor measure my ACE, and my D-metabolites?" which explains what you need to have measured.

The thing you measured, 25-hydroxyvitamin-D, is an essentially inactive metabolite. It is unimportant, and tells us very little about the disease state. The value that Doc should have measured is 1,25-dihydroxyvitamin-D which is the active hormone. Once you get the values for both 1,25-D and 25-D then you will be able to get a better picture of why you are feeling ill (do not use Labcorp for the 1,25-D assay)

I once wrote a simplified explanation for the BMJ. It can be accessed at this link

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Toobusy (---.lsanca1.elnk.dsl.genuity)
Date:   04-04-04 14:49

Can you tell me your sources for the list of Hypervitaminosis-D

After doing a lot of searching on the web, the 6 symptoms I have seen listed for Hypervitaminosis-D is:

dehydration
vomiting
decreased appetite (anorexia)
irritability
constipation
fatigue

I can't find a listing for all the other symptoms.

Thanks,
Lynn
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-04-04 15:30

Lynn,

The classic description of hypervitaminosis D describes symptoms that result from excessive intake *by mouth* of vitamin D, the inactive precursor to hormone D, which is 1,25-D. The same term also applies to excessive amounts of the active hormone, 1,25-D, which is what sarcoidosis patients produce in profuse and unregulated amounts. When you read the list of symptoms for hypervitaminosis D that are on health sites, they are describing what is usually benign overdose of vitamin tablets or excessive intake of vitamin D-fortified foods, not what happens with the dysregulated vitamin D metabolism that sarcoidosis patients encounter. Please note, however, that excessive vitamin D fortification can be fatal, and you probably didn't find that listed in the sources you consulted.

When we researched the symptoms of hypervitaminosis D, our search was much more extensive. We evaluated published articles listed in PubMed about vitamin D and sarcoidosis, detailed articles about normal vitamin D metabolism, biochemistry texts and materials related to vitamin D toxicity and prescription-only vitamin D overdose. We didn't get too hung up on whether the term was hypervitaminosis, vitamin toxicity, vitamin D intoxication or overdose. Our goal was to provide a comprehensive list to inform medical professionals about the dangerous and insidious symptoms from excessive hormone 1,25-D in sarcoidosis.

Belinda
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-08-04 11:35

To everyone,

One of our concerns about sarcoidosis patients taking food supplements or vitamins is that sometimes manufacturing errors can result in more vitamin D in a product than the label indicates. Here is a notice by the Food and Drug Administration of one such case. If anyone has been taking Solutions IE Ageless Formula II by Aloe Commodities International, Inc., Carrollton, Texas, you should know that some lot numbers are being recalled because they contain higher-than-labeled levels of vitamin D3. People taking these supplements have ended up in the hospital.

Notice the FDA's list of symptoms of vitamin D toxicity: flu-like symptoms, "weakness, fatigue, headaches, nausea, vomiting, diarrhea, mental status changes and possibly coma in severe cases."

Belinda
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Betty Campbell (---.42.220.203.acc07-dryb-mel.comindico.com)
Date:   04-08-04 17:18

Hi Belinda

Re your list of Vit. D toxicity symptoms.

July 2002, I enjoyed a five day tour aboard a Paddle Steamer on our largest river in South Australia. Each morning on land doing a bus tour of projects and sights. --(hours sitting behind glass!) Back on board the entertainment facility was large and glassed in on three sides. At night the lighting there was also extra bright.
On the third night I went to bed and had a goodly bout of diarrhea. Woke next morn feeling very weak and nauseous. The stewardess brought me Kao Magma before the breakfast hour, and I went back to sleep, and slept for the next 24 hours, solidly. Did not budge my body at all, even to go to the bathroom. Did not know my husband had been looking in all day, changing his clothes..doing the tours. I missed the subsequent "Trivia" night I would have enjoyed so much. I have thought (to myself) that this was a 24 hour coma!.

Betty
P.S. To add to all this we drove for 5 hours to get to the Paddle Steamer, so more sitting behind glass. I now take my cancer council "sleeves" whenever I am in car, if I don't have enough length of sleeve in garment. Plus of course the hat, gloves etc.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: JPS GUJRAL (203.101.10.---)
Date:   04-14-04 02:11

HI,

I AM 41 YRS OLD MALE , 21/2 YEARS BACK I WAS TOLD BY THE DOCTOR THAT I HAVE PULMONARY SARCOIDOSIS ONE DOCTOR TOLD ME NOT TO TAKE PREDNISONE BUT OTHER DOCTOR TOLD ME TO START STEROIDS, I TOOK PRED FOR ABOUT 18 MONTHS, THE ONLY RELIEF I GOT FROM STEROID WAS IT STOPPED MY COUGH AND FEVER. BUT I STILL HAVE MUSCLE WEAKNESS DOWN MY ARMS AND LEGS, JOINT PAIN, FATIGUE , I FEEL SLEEPY ALL THE TIME AND TOUNGE IS ALSO BEEN WHITE COATED SINCE THEN.

I HAVE GOT MY SERUM CALCIUM TEST DONE RECENTLY AND IT IS ON THE HIGHER SIDE I.E. 10.2 , I HAVE NEVER GOT VIT. D TEST DONE AS IT IS VERY EXPENSIVE.

I TAKE NOT MEDICINE NOW EXCEPT SOME HERBAL FORMULATION FOR PAIN BUT IT IS NOT HELPING. MY DAILY ROUTINE IS I HAVE TO TRAVEL IN CAR IN DAY OR MOST OF THE TIME I AM IN OFFICE.
KINDLY ADVISE ME IS THE PAIN DUE TO Hypervitaminosis D, IF YES WHAT SHOULD I DO?

JPS
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-14-04 19:56

JPS,

Welcome to SarcInfo. It sounds like you found out the hard way that steroids don't work. Since prednisone suppresses your immune system, that coating on your tongue may be due to an overgrowth of yeast. Please ask your doctor to check this out.

Your elevated serum calcium signifies serious sarcoidosis inflammation. It's very likely your pain is caused by an elevated 1,25-D. Yes, the D-tests are expensive but it is the most important test to help your doctor evaluate your systemic involvement and thus the need for safe, effective treatment.

I hope you will be able to arrange your work schedule so that you can stay in your office and minimize your exposure to sunlight.

Read all the information on this site to find out what you should do. I'll email you a copy of How To Start The Marshall Protocol.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: JPS GUJRAL (203.101.8.---)
Date:   04-15-04 03:57

Hi Meg,

Thanks for your prompt reply. Can you kindly tell me what is the name of the test for Vit-D and the method to be used to do the test. Though I am indoor most the time but some time travelling car from one place to other exposes me to sunlight.
Could you kindly suggest me any medication to reduce Calcium & Vit-D.

Why are doctors averse to your theory of Minocycline & Benicar. There is a research going on another drug call Pentoxiphylline , could u kindly send your comments on this.

Regards

jps
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-15-04 06:45

JPS,

Those are good questions. You will find the answers in the patient tutorials at the top of the page.

My doctor is not averse to the Marshall Protocol and neither are the hundred or so doctors who are helping the other SarcInfo patients. As to why the recognized sarcoidosis specialists, who are all pulmonologists, are reluctant to accept this safe, effective treatment plan, you'd have to ask them. They have refused to engage in any discussion of this topic that is so vital to our health.

Trental (pentoxyfylline) is not FDA approved for treating sarcoidosis and there are no studies showing that it helps this disease in the long run.

Meg
 
 Recently Diagnoised
Author: Bebe Harrison (---.NIPR.MIL)
Date:   04-26-04 13:09

To all,

I was diagnoised with sarcoidosis in March 2004. Since, then I've been rushed to the emergency room twice with severe chest pains and shortness of breath. Other symptons are: nausea, fatigue, other joint pain, dizziness, coughing, headaches, fever. I am now begin to feel soreness when I rest my elbow, knee pain, and my hands have started to hurt. And don't let me go out in the sun...its over.

Steroids is not an option for me because of all the side affects and the returning of symptons after you have stopped. I was told that this disease is not fatal, but in reading some of the threads....Trevor states that is!!! (unless I miss understood)

Do anyone know of any doctors that specialize in this area in Oklahoma. (Oklahoma City or Edmond Oklahoma)


Thank you,
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-26-04 13:17

Bebe,
Sarcoidosis is a chronic inflammatory disease which degrades the whole body so effectively that most patients eventually die of kidney or liver or heart failure.

Your pulmonologist might like to believe that if you die of kidney failure it is not from sarcoidosis, but he is wrong. Dead wrong. Unfortunately, you are the one that ends up dying, not he.

..trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-26-04 18:16

Bebe,

Welcome to SarcInfo. It isn't necessary to find a doctor who specializes in sarcoidosis. Ask your primary care provider to read the Papers for Physicians and order the tests/meds on the Marshall Protocol. If your doctor refuses to help you with this safe, effective treatment, let me know and I'll email you a list of doctors who might be more supportive.

Good luck,

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Bebe Harrison (---.NIPR.MIL)
Date:   04-28-04 08:38

Trevor, Meg

I have fax my doctors the Marshall Protocol therapy and now awaiting their responses.

After the three month therapy is the disease dormant and no additional medication is needed. Is this a cure? or Can this disease surface in the future?

What do the stats show amongst those that have already completed this therapy.

Thanks, Bebe
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Bebe Harrison (---.tinker.af.mil)
Date:   04-28-04 08:40

Trevor, Meg

Just heard from one of my doctors. Its a no go.. One more to go.

Bebe
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-28-04 18:24

Bebe,

We don't have the answers to all your questions yet. This treatment is only a couple years old. Most patients are still in the recovery process but many have made great strides. It takes at least two years to treat tuberculosis and it looks like sarcoidosis will take that long for many patients. There is a second and third phase to the protocol. Is it a cure? That's very possible. Time will tell.

Sorry about your doctor. Let me know if you need that list of physcians.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Bebe Harrison (---.NIPR.MIL)
Date:   05-03-04 07:50

Trevor/Meg,

Please send the physicians listing for Oklahoma City Oklahoma.

Thanks, Bebe
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.117.96.183.euc.wi.charter.com)
Date:   05-03-04 19:24

Bebe,

Check your email inbox.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Bebe Harrison (---.ok.ok.cox.net)
Date:   05-11-04 16:31

Trevor/Meg,

Today I had a stress test and ultrasound done on my heart, because I continue to have pain on my left side and across my chest. One of the diagnosis was pericarditis which acts just like symptoms of sarcoid. Do you know if this is related to sarcoidosis? It seems like I'm being sent to all of these specialist (lung, eye, heart, etc) for individual symptoms instead of sarcoidosis...this is really becoming scary and tiring.

Still searching for a doctor who will assist me with M protocol.

Bebe
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.187.82.79.eau.wi.charter.com)
Date:   05-11-04 18:29

Bebe,

A google search turned up this article on restrictive pericarditis which mentions sarcoidosis as a possible cause.

When many specialists, especially cardiologists, are involved, it can be difficult to find a doctor who will manage all your symptoms. I hope you will find a supportive doctor on the list that I sent to you.

Please let us know how you get along.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Curtismae (---.proxy.aol.com)
Date:   05-11-04 21:13

Hi Meg,

Thanks for your prompt response. I am at the end of my rope. I guess I have hypervitaminosis D because I have checked off quite a few of the symptoms.

My energy is low and I am have calcium deposits in one hand and a ganglion cyst on top of the same hand, after being X-rayed, I am scheduled for a MRI and Neurological study, sometimes, my finger are numb and I am having soft tissue problems.

My attempt is to find a doctor who would be willing to give me Minocycline. My pulmonary doctor refuses to give me anything except chemotherapy and/or predisone. I had Predisone at the initial diagnose for sarcoidosis. I have refused both of these toxic medications.

I cannot understand why my Pulmonary doctor refuses to even try Minocycline. If it did not work, then, I would be willing to do it his way.

I am looking for a second opinion, do I go to a Pulmonary MD, Internal Mediene MD, or a Family Practice doctor?

I need a doctor not only for second opinion but one who will be willing to manage sarcoidosis by other than conventional means.

Until I read Sarcinfo, no one has ever told me about the hyperviaminosis D and calcium. In 2000, the GYN nurse practicer told me to take large dosages of calcium daily, which I did (and langished) until my present Pulmonary doctor (a new doctor) told me it was too much. Still, no one informed me of the problems vitamin D and calcium causes in relation to sarcoidosis.

How do I find a doctor? Since I cannot speak to him/her when calling, do I just inquire if the doctor is willing to meet my needs and have them return my call.

Actually, this is new to me because I have always been in military system. I am not really familiar with the civilian sector although I do have insurance that covers civilian care.

I hope someone can advise me because I need to be medicated. The Trental does not make a big impact. I have tinnitus, balance problems, bone pain, chest pain, skin lesions, dry eyes and lesion under my eyes. Also, there are times when I have swallowing problems.

Is there a hospital for sarcoidosis in Scottdale, Arizona?
 
 BOOK ABOUT CFS
Author: Danie (---.saix.net)
Date:   07-19-04 02:28

1. Have you heard about the book "A disease called Fatigue?" by Dr.C.L. Jadin

2. Could you please explain to me how would one know if one has CFS or any other immune disorder disease?
Is it neccessary to first determine whether the patient has CFS, as opposed to any other immune disorder disease, before going ahead with the Marshall Protocol?
My daugther's symptoms are very similar to some of these immune disorders.

Please help!!!!!!!!
 
 Re: BOOK ABOUT CFS
Author: Pippit (---.aep.bellsouth.net)
Date:   07-19-04 04:01

Danie,

Welcome to Sarcinfo. Most of these diseases are hard to diagnose, but if you can match your daughter's symptoms to the ones listed on this site then you can be pretty sure that it is an autoimmune disease. If your daughter tries this and she has herxheimer, then this will have proven it's point.

Please read all the papers at the top of the page and bring them to your doctor for him to read. He can then do a 25-D and 1,25-D blood test and ACE to check for inflammation. It won't be necessary for him to diagnose you before he starts you on the protocol because all of the Th1 inflammatory dseases are similar and respond with the right combination of antibiotics and Benicar.

It is important for you to reduce your exposure to sunlight and Vitamin D in your diet. If you are on any supplements discontinue those.

You can see other CFS patients getting better on two sites; Marshallprotocol group and at MarshallProtocol. com

Links to these two sites are right at the top of the page, and they specialize in CFS/FM/CFIDS

I have not heard of the book but I think there are a lot of people in these sites whom would be interested.

Let us know after your reading if you have any questions.

Pippit
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Evelyn Gernaat (---.imt.net)
Date:   07-20-04 10:42

I am having neurosarcoid symptoms I believe. Tingling, numbness in toes, joint pain, can't stay asleep, feeling of swelling in back of head, sinus congestion. I have had lung and eye involvement for 2 1/2 years. I'm trying to stay off prednizone. I was diagnosed with Sarc 2 1/2 years ago. I've been trying to avoid prednizone. Last September I began having tingling all over and numbness in the face and tongue, swelling feelings in the back of my head. Can't stay asleep and often feel like I am falling when I first go to bed. Symptoms improved for awhile when I tried to stay out of the sun. The first Vit D test I had done in Nov. after being out of the sun for about 6 weeks was 9 and 50. I can't get them to tell me which is which. I felt better for about a month and then the neuro symptoms started again. I've felt lousy since February. A few weeks ago I saw a reumatologist as my joint pain was worse. He just had me get another Vitamin D test because he said the number 9 was too low and I needed to take aVit D supplement. My latest test came back and the nurse said there was only one number and it was normal, 14. Can you make heads or tails of this? Neither my pulmonologist or reumatologist believes Vit D could have anything to do with this because the lab says these test are normal (except for the 9) They don't want to try the minocyline because they say it would be dangerous with my sensitivity to the sun. The reumatologist also said that he has used minocyline for people with arthritis as it reduces swelling and if it worked for Sarc that would be just reducing swelling not killing the bacteria that are causing it.
Any light you could shed on my symptoms or the Vit D numbers would be helpful.
Thanks,
EVelyn
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-20-04 18:14

Hi Evelyn,

It's nice to hear from you again. I'm sorry you are still feeling ill. The statements your doctors made indicate that they do not understand sarcoidosis.

Please call your clinic and get a hard copy of those D-tests. Then post the numbers on SarcInfo so we can help you analyze them. I suspect that they indicate a high level of systemic inflamamtion but it's not wise to guess.

The art of practicing medicine involves more than just basing decisions on test results that happen to be within the normal lab ranges. Have you taken the papers for physicians to these doctors? It is their job to study the diseases that they are treating and these papers will bring them up to date.

The symptoms you report are very serious and should be treated with the Marshall Protocol. If you do a search of this site you will find stories reporting the resolution of these symptoms with the Marshall Protocol.

If you need a referral to a doctor who may be more supportive, just let us know.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Ronda (---.131.40.98.Dial1.Cincinnati1.Level3.net)
Date:   07-21-04 08:57

I'm so glad to have found this information today. My husband first began to have symptoms of fatigue, irritability, loss of memory in 1996 quickly followed by lumps in his neck which continued to grow and multiply for several years. We feared it was lymphoma but luckily the first doctor we saw told us it was probably sarcoid, then did surgery to remove a lump then confirmed it. Strange thing was as soon as the lump was removed for biopsy all the other lumps began to quickly disappear and have never came back. The doctor we saw did basic blood work and a chest X-ray that showed lesions. We were never told to do anything other than find info for ourselves on the web. The only treatment given was a two week dose of prednisone which would help put him into "remission" for about 6 months before he needed another round. It seems as though the sarcoid "travels" through his body. He has had soreness in his shoulders, leaving then moving to his knees and then hips. Now it seems this attack he has been having has been his worse (tightening of the throat, extreme fatigue, soreness of his big toe, burning red eyes, brain fog, weight loss,no appetite, metalic taste) and I think I am to blame. About 6 weeks ago I began giving him calcium and vitamin D supplements along with other herbs/supplements such as ginseng,alph lipoic acid, acetyl l-carnitine,grape seed extract, ester C, bilberry, Co Q-10, CLA, and a Omega 3-6-9 pill. We have been on vacation for 10 days and I didnt take these with me so he has been off the vitamin D. He did eat cereal almost everyday and was in the sun almost most of the day. Today he is in bad shape. He wants to go get another round of prednisone and I would like to take this info to his doctor. We have no insurance and I'm wondering if anyone could give me an idea to how much these tests for vitamin D cost, could it be possible to do the Marshall protocol without the test for Hypervitaminosis D, and are there any herbs/ supplements that he could still take? I find that the bilberry and grape seed help his eyes somewhat, and I know that Co-Q 10 is beneficial to the heart. Also could he go ahead and take the predisone for two weeks, then start on the antibiotics? Is there a link for a paper I can give the doctor that explains the exact doses, type of medications and the reasons for the certain types of medications, something he could look over quickly? I'm afraid if its too detailed he will not spend the time on it. Im still confused over the exact dosing and if and when to quit the therapy, how long it takes, and when you can quit the therapy. Thanks again for the information and giving us some hope.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: John Dresser (---.csr-wy.client.bresnan.net)
Date:   07-21-04 09:28

Rhonda,
See the "Papers for Physicians" at the top of this page and click on the phase 1 protocol info. Print that for your doc.
You are right about giving doc too much info at first, but it will help if you print out several other pages that help you understand the MP and try to learn as much as you can, so you can educate your doctor in a brief visit. Leave copies with him to read later.
My lab work for the two D tests was about $202 plus the office visit to get the blood drawn. I am estimating total drug costs will be less than my $2500 deductable for the first year of the MP. It sounds like we need to budget for two years, and maybe more. Trevor will tell you these bacteria have been accumulating for years, and it takes a long time for the antibiotics to kill them. So you need to make a long term committment.
Take a look at the thread: "Medication costs and purchasing strategies " for some information on getting the best prices on prescriptions.
John Dresser
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-21-04 16:46

Hi Ronda,

Welcome to SarcInfo. John gave you excellent advice.

Your husband's sarcoidosis story is very familiar. Sarcoidosis is a multi-system, chronic, progressive disease. The use of prednisone accelerates the symptoms because it suppresses the immune system which allows the bacteria to grow.

Even though your husband has ingested less Vitamin D in the past 10 days, his increased sun exposure has caused an increase in his 1,25-D. This accounts for many of his symptoms. The fat stores of Vitamin D will take a few months to deplete with complete abstinence of D foods and supplements. It is very dangerous for a sarcoidosis patient to spend any time in the sun. He could have cardiorespiratory symptoms that would send him to the emergency roon.

I hope your husband won't fall for the 'quick-fix' of prednisone. It might make him feel better for a little while but he will relapse again and each relapse tends to be worse.

The expense of the Marshall Protocol is a relative medical bargain. I recommend the D-tests because it sounds like your husband is very ill and most doctors will not be convinced to order Benicar without this corroborating evidence.

Tell your husband that he must stay indoors and avoid bright/lights also. NoIR sunglasses are essential. Do not give him any more supplements, even those not obviously containing Vitamin D. We don't know how they affect the immune system. He should feel a bit better with these measures. And Benicar should make him feel even better as it safely blocks the inflammatory cascade.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links or starred threads on this site.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Pippit (---.asm.bellsouth.net)
Date:   07-22-04 03:17

Rhonda,

I don't know what to tell you as far as getting the D tests without insurance, but you can probably qualify for free medication if you meet the income requirements.

See below;

Sankyo Needy Patients’ Program (Free Benicar)
http://helpingpatients.org/screen_viewprogram.cfm?program_id=56

Needy Meds (variety of different meds)
www.needymeds.com

Helping Patients.org
http://www.helpingpatients.org/index.cfm

Caring Voice Coalition
http://www.geneticalliance.org/Resources/displayorganization.html?orgname=Caring+Voice+Coalition

Free Medicine Foundation
http://www.freemedicinefoundation.com/?OVRAW=Patient%20Assistance%20Programs&OVKEY=patient%20assistance%20program&OVMTC=standard

Hope this helps,

Pippit
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-22-04 07:06

Ronda,

Others have pointed out that lab test costs can vary. So it might pay to check around by phone, if you have some choices, to find the one that charges the least. But please remember that we do not recommend Labcorp.

Meg
 
 Need Help Reading Labs
Author: Carolyn K. Brown (---.chilitech.net)
Date:   07-22-04 16:34

I just got my labs back today, but don't know how to read them. I know that somewhere in all these pages I can find an answer, but I don't feel well enough to sit up long enough to read. I am very sick.

Here's the results: ACE was 92

1, 25 D was 59

25 D was 37


Can you help me learn what these mean?

Thank you, Carolyn K. Brown

Thank you so much, Carolyn K. Brown
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-22-04 16:45

Carolyn,
The 25-D shows you are taking a Vitamin D supplement, or something with a lot of Vit D in it

Your 1,25-D is higher than the Merck maximum of 45 pg/ml, in fact 99.9% of the population would have values lower than that (it is 3.3 sigma high).

So if you identify and cut your Vit D intake you will start to feel better, and the MP will help you cut your 1,25-D even further, and, more important, help you kill off the bacteria that sent your 1,25-D so high.

..trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-22-04 20:36

Carolyn,

You may not have a diagnosis of sarcoidosis but your test results and your symptoms are a clear indication of a Th1 inflammatory disaase. That is all you need to know.

Please ask your doctor to start you on the Marshall Protocol medications asap. Use the document "How To Start The Marshall Protocol' to guide you.

Let us know how you get along.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Carolyn K. Brown (---.chilitech.net)
Date:   07-22-04 23:19

Trevor, what about the ACE elevated to 92? Is that in indication for a DX of Sarc?

I have my doctor's appointment at 11:00 Friday (tomorrow) morning. I hope he is receptive to the MP. I appreciate your information.

Thank you, Carolyn

Thank you so much, Carolyn K. Brown
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-22-04 23:27

Carolyn,
Your 1,25-D is sufficiently high for a definite diagnosis of extensive Th1 inflammation.

The ACE being high is just icing on the cake, putting the diagnosis beyond dispute, IMO.

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-22-04 23:33

Carolyn,

Medline says, "Normal values vary with age and with the test method used. Typically, adults have ACE levels less than 40 micrograms/L."

An elevated ACE test can be useful in confirming several diseases, including sarcoidosis and tuberculosis, but is not specific for any disease.

Belinda
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Carolyn K. Brown (---.chilitech.net)
Date:   07-22-04 23:45

Thank you for your post, Belinda. I am 57 years old and my ACE is NOT less than 40, it's 92. I guess I'm looking for a definitive Dx of Sarcoidosis, so my doctor will feel better about starting me on the MP.

Thanks you too who have answered my posts. Carolyn K.

Thank you so much, Carolyn K. Brown
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lottie (---.proxy.aol.com)
Date:   07-23-04 00:47

Carolyn,

What they're saying is that with your inflammation markers, the D's and the ACE, that you definitely have an inflammatory condition which qualifies for the MP, and that you don't need a definitive diagnosis as to which inflammatory disease it is.

You have the benefit that most of us with a Sarcoidosis diagnosis don't have... the elevated ACE to help prove to the doctors we have it, or another infammatory disease.

The only other thing that I can think of that could be done for a more definite diagnosis is a biopsy. A biopsy is invasive, and not necessary.

Good luck with your doctor!

Lottie

 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Amie (---.socal.rr.com)
Date:   07-26-04 00:01


I do not know what I have any more I've been diagnosed with firbromallagia, osteoarthritis, RA, Anemic Etc.........
My joints hurt and my hands and ankels are swallowing and I feel tired all the time ,I sleep many hours and still tired with no energy. I can not breath and I have num thumps and toes, I have fuggy brain most of the time and I can not consentrate.my hair are falling, I am losing my hearing, lately I feel out of breath and hot, I do not know if it is the hot flashes or the desease. I can not remember exactly when I started feeling this way but I think it was more that 10 years ago. I am 45 years old.
My lower back hurts and I thought I did have Romathoid Arthritis, when a freind of mine introduce me to the road back foundation site, they gave me Dr Referral (Dr Maury Susser) in Century City; I went to see him back in December last year. He charged me $845.00 for blood test and the visit. He did not accept insurance. My insurance then denied the claim for reimbursement and raised my premium from $245.00 a month to $545.00 a month.
I decided to cancel the health insurance and pay for the treatment out of my pocket.
In January before my second visit I read a post at the road back saying that Dr Susser were disciplined by the medical board in New York and Los Angeles. After I investigated him I decided to see another Dr and I again asked the road back board to refer me to a good Dr ,they did refer me to Dr Robert Franco in Riverside I went to his office on May, the visit ended with me paying $2500.00.which they did charge it to my credit card.
I made an appointment to see Dr Franco in June 7 to discuss the results and to start the treatment. When I went to see him, he spent 5 minutes Looking at my blood results , then he said that I am border line arthritis factor and I tested positive for Mycoplasma and inflammation, but he can not give me antibiotic at that time because I am weak and I can’t tolerate the herix. He prescribed vitamins and Supplements to strengthen my immune system.
He asked his office to make me an appointment in 4 weeks to see if I am strong enough for the Ap. I asked him about the yeast Infection and the Candida because I tested Positive for Candida and I itch, he said just do vinegar douches.
They charged my credit card $1214.00 for the visit and the supplements.
I started taking the supplements as prescribed Jun 7; it was the last day of my monthly Period, three days later I started bleeding again constantly for 10 days.
I called his office asking if those supplements Contains any hormones because I do have fibroids In the uterus and I do bleed if I take any birth control bills or any hormones, they said the vitamins has nothing to do with the bleeding.
Since the bleeding did not stop I decided to stop taking them on the 18th and I took Iron supplement, which I was taking before I started the supplement. One day later the bleeding Stopped. I called his office again and they said one of the supplement has magnesium and it might had caused the bleeding, they asked me to stop taking it and to continue taking the other two and I did, I do not feel any change I am still in pain my back hurt and my left knee and the swallowing still there.
What bothers me the most is not able to breath even I thought of geting oxygen treatment.
I have my third appointment in 2 weeks I do not know what to do, I hate changing Dr’s.
Last night I was looking at the roadback site and I heard about Marshal protocol and it made since to me becuase I have almost all the simptons of this desease which I never heard of, also 15 years ago I tested positive for a TB skin test and I did the lungs X-ray and they said I do not have TB I was exposed to the virus only but I do not have the desease.
I cough some times at night . but the feeling of not be able to breath and the panic of almost fainting scares me.
I live in Los angeles do you recommend another Dr or Dr Franco in Riverside is familiar with your protocol.
Please help me I almost gave up.
Thanks
Amie
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Pippit (---.asm.bellsouth.net)
Date:   07-26-04 01:37

Amie,

Welcome to Sarcinfo. You've come to the right place. This is the most cutting-edge abx protocol you will find out there. All of the symptoms you mentioned are very classic of these Th1 diseases.

Please read all of the papers and tutorials above. This will provide all the information about how this protocol works, why it works, and these papers can be provided to your doctor so that he can go ahead and get you started as soon as possible. Sometimes it's best to go over the most relevant information with a highlighter pen so that your doctor can cut right to the chase. The first phase of the protocol has step-by-step instructions on how to impliment this treatment.

Benicar is what makes this the most comprehensive of all the antibiotic protocols. The biochemistry has taken several years to develop and fine tune, but hours and hours have gone into it in order to figure the dosages, specific antibiotics that have a synergistic effect, and maximizing these drugs' effectiveness. This treatment has a 95% success rate. We want everyone to get well; not just a few.

You will want to first discontinue any supplements, and start staying out of the sun, and restrict your Vitamin D intake from diet and other sources.

Hang in there and have faith. The time has come to put your disease into a remission. It will take some work on your part and it may not always be easy, but it will be worth it if you follow the instructions as they were designed.

After doing some reading let us know if you have any questions. We're here for you if you need us.

Pippit

 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Marilynn Doyle (---.proxy.aol.com)
Date:   07-26-04 14:06

Amie

I am sorry you have gone through so much at in the hands of doctors. I read you post and I have cancelled my appt. with Dr. Susser. Did he do anything for you as a result of the blood work? I also am in L A area, in the Antelope Valley. Do you think he would have been open to the Marshall Protocol?

I am also looking for a doctor, I will let you know if I find one.


Thanks for the information, Marilynn
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-26-04 21:20

Amie,

Thanks for sharing your experiences with those two doctors. They both use minocycline for treating RA so we had hopes that they might be open-minded enough to try the MP. Disciplining by a medical board might mean many things and isn't an automatic reason not to see a doctor. Some doctors who have used unconventional treatments such as long-term, high-dose antibiotics for Lyme disease have been unjustly sanctioned in New York. Reportedly Dr. Franco's assistant may be less rigid and willing to try the MP. I have added your comments about these doctors to our list so that patients can be wary.

It is good to keep in mind the tests needed on the MP and not agree to any others without a good explanation. Also, supplements are contraindicated on the MP and I would be leery of any doctor who is prescribing something and selling it from his office.

You should ask Dr. Franco if he will follow the MP or if his assistant will. You can make it very clear to him that you will be looking for another doctor if he says no.

We are adding names to the list of docs every day so let us know if you need me to send it again.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-26-04 21:25

Marilyn,

I have emailed you the latest additions to our CA doc list.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Dorene (---.cable.mindspring.com)
Date:   07-28-04 08:09

I have written before about this but here are some new questions I can not find the answeres to:
I have been having severe myalgias for the past month or so. I was diagnosed with pulmonary sarcoid a month ago and I am not receiving any treatment for it. The only thing that helps is taking Vicodin to relieve the pain. I went to my pulmonologist to have my D checked and he refused to do it. He feels if my D was elevated my Calcium would be too, which was normal. My recent ACE was 63.
I also recently started Yoga thinking it might help, but it seems to make it worse if that is possible. I also stopped my Prenatal vitamins which have 400 IU of D about 2 weeks ago.
Questions:
1) how long does it take for D to flush out of your system? If your D is elevated how long does it take to come down?
2) is it possible that exercise can make the myalgias worse?
3) has NSAIDS been shown to help with the myalgias?
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: DJ (---.montanavision.com)
Date:   07-28-04 10:06

Hi Dorene!

If you are pregnant or trying to conceive, you should consult your ob/gyn doctors and carefully follow their advice. In my experience, the best thing I could to for myalgias was to lower my Vitamin D intake, not just supplements, but food sources and sunlight exposure to skin and eyes as well. But in your case, I don't think you should start doing that without knowing where your D-levels are at. If your pulmonologist is reluctant to test, perhaps your ob would do it - any doctor can order these tests.

1) As I understand it, vitamin D is stored in the fat cells, and is retained in the tissues for long periods of time. It took at least two months after eliminating all sources from my environment to begin reducing my 25 D levels and the accompanying myalgias. I did this during the period of time I was waiting for my doctor to start the Marshall protocol (which is your ultimate solution to the sarcoidosis and its painful effects.)

2) Fibromyalgia patients report that regular exercise is helpful in controlling their symptoms. When my sarc symptoms were in full swing, I was much too fatigued to exercise or even do much physical therapy - I wouldn't try to overdo it! hehe

3) I got my best pain relief from hydrocodone (generic Vicodin) or related compounds, but it should be used with care. NSAIDs were the second most effective for my sarc symptoms but had other side effects (again, you should check with your doctor about contra-indications for pregnancy.)
I only had to use these for a short time until I got my D- levels under control. Now that I have been on the protocol for a while, I never need anything other than aspirin, and that is occasional.

None of my business, of course, but if you are not pregnant yet, you might want to consider delaying a family until your sarc is under control. Many women with sarc have nasty flares after delivery which makes it that much more difficult to enjoy the new baby.

Best wishes for your return to good health,

DJ

 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-04 10:21

DJ and Dorene,
During pregnancy the placenta manufactures extra 1,25-D and the mother usually has a "D high" followed by a relapse post-partum. High levels of 1,25-D stop your immune system kiling the bacteria, and they multiply freely.

Dorene, if you are not yet pregnant I would strongly suggest you deal with the Sarcoidosis before you become pregant, as the antibiotics and ARBs you need to deal with Sarcoidosis cannot be used during pregnancy.

Take a look at the BMJ letter on this topic I generated yesterday, and the citation it makes

http://tinyurl.com/6s6cs

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Francois (167.198.210.---)
Date:   08-09-04 12:11

Does anyone know where I can buy Multivitamins without Vitamin D? I was practically laughed out of three nationwide chain stores yesterday when I made this request. I was recently diagnosed with sarc, and I did'nt think my request was that impractical.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-09-04 16:56

Francois.

A search of this site revealed the following info for a multivitamin without Vitamin D:

Affordable Nature's Life
http://www.affordablenatureslife.com/
E-mail: orders@a..
Phone: 732-920-3637

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Katina (---.242.117.131.Dial1.Seattle1.Level3.net)
Date:   08-12-04 18:17

My daughter is about to get a biopsy to confirm whether or not she has sarcoidosis. After 16 months of tests and I guess about 5-6 mths of remission in the middle of it. I am still trying to understand the Vitamin D and sunlight thing, is this still the case if none of her symptoms involve skin or pulmonary issues...?

I have read of 4 stages of Sarcoids as well as levels and categories like Neuro, Pulminary etc... about a year ago when this was just one of the many possibities they were considering. Does anyone now where I can get a list of these different categorires so I can try to understand more about my daughters specific symptoms?
Are there levels of severity?
What is Benicar?
Is the Marshall Protocol an alternative to Prednisone?

Sorry for all the questions, I'm still trying to get thru the paperwork...
Thanks,
Katina
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-12-04 20:06

Katina,

Sarcoidosis is a sytemic disease. That means it can affect any organ in the body. It is common for diagnosis to be difficult until pulmonary symptoms occur. At one time, sarcoidosis was staged according to chest xrays but this has fallen out of favor.

Severity of symptoms varies but disease progression is assured unless the underlying cause, bacteria, is treated.

Benicar is a drug that blocks the inflammation but doesn't compromise the function of the immune system like prednisone. This allows the immune system to function normally and with the help of low dose antibiotics, kill the bacteria.

The Marshall Protocol is the ONLY treatment for sarcoidosis that is effective. Please read the links and threads here to learn about the dangers of prednisone.

If you read the patient tutorials, I think you'll get a better understanding. There is also excellent basic info about sarc and the MP at marshallprotocol.com

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links, starred threads or by doing a site search.

Meg
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: wayne newbury-lee (---.gepower.com)
Date:   10-04-04 07:19

Dear All,

I live in the UK.
My mother has suffered with Sarcoidosis for about 20 years, it was first diagnosed about 2 years after suffereing with cancer of the womb.
18 months ago my mother suffered with a collapsed lung that would not re-infalte we were advised due to the effects of sarcoidosis that it would have to be removed. My mother has been prescribed with Prednisone and steroids for some years by our local doctor.

She is today in hospital struggling for breath surrounded by confused staff, X-rays apparently show nothing. She has hi-bp, low oxygen count and many of the other symptoms mentioned above. I have not heard my father or doctor mention Vitamin-D over production etc. Has anyone else been in this position and what advise could you offer us.

brgds
Wayne.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-04-04 07:28

Wayne,
There is only one centre in the UK which can measure 1,25-dihydroxyvitamin-D and that is Manchester Infirmary.

Please read the ACCESS STUDY document linked at the top of this page. There has been a half-century of mis-information about sarcoidosis fed to physicians from the specialists who were entrusted with research into this disease.

Your mother, unfortunately, is suffering as a result. I am sure the hospital staff are doing their best, but they are treating a bacterial disease as if it was an environmental disease, so their success rate is typically very low.

There is a UK-centric thread here on sarcInfo, and you will find some useful links in it. I would be happy to talk with any of your mom's physicians, should they call.

..Trevor..
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Aureole (---.evrtwa1.elnk.dsl.genuity)
Date:   10-05-04 19:51

Can you tell me why a sarc person would avoid Folic Acid? I saw it mentioned. Thanks.
Aureole
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-05-04 20:18

Hi Aureole,
This is from our sister forum: "Folic Acid in your bloodstream makes it easier for the bacteria to replicate and create new DNA." in a thread aboutFolic Acid. To read more go to The Marshall Protocol
Hope this helps, Caroline
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Ann Loris (---.libcom-dynamic-dialup.coretel.n)
Date:   10-08-04 18:09

I was recently diagnosed with sarcoidosis after a biopsy of lymph nodes in the chest area. I have joint problems, pain for no none reason, shortness of breath and sometimes pain on the right side of my chest, some wheezing and feeling like I can't get enough air. I also have heart palpations and increased palse rate. I just had stress test and echo, 99% normal for my age which is 60.

My pcp put me on Advair and albuterol, I try not taking the albuterol as it makes my heart race. About a month ago I woke up and my wrists and ankles I couldn't move without severe pain so I was put on prednisone for 2 wks and wore braces. The symptoms subsided. I have seen a pulm phy.
who told me you can't hear wheezing(whom I instantly disliked) he ordered a PFT which was normal.

My question is what type of dr. treats this as a whole disease or do you have to have a family dr., a rheumatologist and pulm. dr.? And do you know of a good dr. in the Pgh.,Pa. area that treats this and doesn't think its a joke, because the pulm. dr. I saw treated me like it was. If you can be of any help, please let me know. Thanks, Ann
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lottie (---.proxy.aol.com)
Date:   10-08-04 20:50

Ann Loris,

Welcome to SarcInfo.

I’m sorry that your pulmonologist is acting that way, but it doesn’t surprise me at all.

I recently weaned off of Prednisone, as I prepare to go onto the full Marshall Protocol, and for about five weeks, I was wheezing like crazy. It’s settled down some, but I could hear it (it kept me awake some nights), and so could my doctor. There were other "noises" I could hear too.

Sarcoidosis can affect ANY AND ALL ORGANS in your body. Anybody that has Sarcoidosis knows that it isn’t a joke. It is a very serious illness.

Since steroids suppress the immune system, you do NOT want to take Prednisone, or any other steroids. Advair contains a steroid, which can be absorbed into the system, so you shouldn’t be using it.

You may be told that Sarcoidosis can and does go into remission on it’s own. It doesn’t. We now know that it is caused by bacteria that actually invade and live inside the very cells that are supposed to kill them. The Marshall Protocol is the only treatment presently in use that will assist your body in attaining remission.

Please read all the information which is located at the top of all the pages. Read both patient and physicians information, and print out the information for doctors to take into your doctor on your next visit. Also, read the different threads, especially the ***starred ones, and their archived versions.

The more you read and understand, the better you will be able to help your doctor to understand about Sarcoidosis and the Marshall Protocol. Most of us have been most successful with our GP’s/PCP’s, as they seem to be more open to using the MP than the specialists. And, you will probably find yourself helping your doctor to learn and understand the MP. You don’t need the specialists to treat Sarcoid.

Sarcoidosis causes dysregulation of the vitamin D. Read the information in this thread Hypervitaminosis D Symptoms and you may be amazed at how many of the symptoms you have.

Be sure to have your doctor order the D metabolites tests and others as noted in this article, "How does Doctor measure my ACE, and my D-metabolites?". Be SURE THAT THE LAB KNOWS THAT THE 1,25 D SAMPLE MUST BE KEPT FROZEN in transit and until testing is done. When you get the results, please obtain a copy, and post the actual numbers from the results on the thread *** My Vit. D and ACE Test Results ***, and we will help you evaluate them for your doctor. Do NOT accept the generalization that they are "within normal limits". We need the actual numbers These tests will show the amount of inflammation that is going on in your body. You may already have biopsy proven Sarcoidosis, but these baseline tests will help as you progress on the Marshall Protocol, and also help you know when you are in remission.

In the meantime please avoid all forms of vitamin D in food, supplements and sun. You will be amazed at how much better you will feel. If you must go out in the sun, please cover up completely! Long pants, long sleeves, hat, scarves, and gloves. Also, obtain the NoIR glasses as indicated in this article Protecting your eyes in Sarcoidosis.

Here is information on Avoiding Vitamin D while on the Marshall Protocol. It is located on our sister site MarshallProtocol.com. As is the article Advice on how to approach your doctor at the Marshall Protocol.com thread, which you may find useful.

If you have difficulty finding a doctor who will assist you with the Marshall Protocol, please Post a Request for DOCTORS at MarshallProtocol.com, and the moderators there can access the list for doctors who may be more open to using the MP.

Best wishes,

Lottie
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: sue (---.glst3401.nj.comcast.net)
Date:   10-10-04 07:25

the neurological symptoms i an experiencing have increased and decreased in severity over the past year or so. I am now trying to get confirmation of the diagnosis of neurosarc. would you expect my vit d ratio to test lower while my symptoms are not so severe? thanks. smc
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-10-04 12:42

SMC,
The D values are not as affected due only to neuro symptoms. Do you noitice your D exposure either thru diet, or the sun when your sx. wax and wane?
Caroline
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lottie (---.proxy.aol.com)
Date:   10-11-04 03:42

Moved to the appropriate thread.

Subject: Foods low in Vitamin D
Author: Lloyd Mitchell

What food contain / have high levels of Vitamin D?

Is there any doctors close to Dubbo New South Wales Australia that treat or
specialise in this disease?

Are there any herbal / natural medicines that can be used as supplements?

Any information will be acted upon with my thanks.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-11-04 04:13

Lloyd,

Welcome to SarcInfo. You have come to the right place to put your sarcoidosis into remission.

To answer your questions; supplements are to be avoided during the Marshall Protocol. There is a wealth of information to be found regarding foods to avoid that are high in D and making good choices in foods wthout D here: Vitamin D Levels In Food

Please post your request for a physician on our sister site, The Marshall Protocol: Post Requests for Doctors in This Topic.

Hope this helps, Caroline
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: sue (---.glst3401.nj.comcast.net)
Date:   10-11-04 06:02

My symptoms began with numbness in my extremities then face, as well as fatigue and lightheadedness. Gradually they progressed over at least the next 5 months with the addition of the following sx for starters: wooziness, dizzy spells, memory difficulty (particularly word/information retrieval) speech slurring/annunciation difficulties, balance coordination difficulties, difficulty processing information visually and auditorily (feeling of being in a fog or in slow motion), overall feeling of being intoxicated, loosing moments of time (I believe i may have been somehow having some kind of miniature seizures). Very gradually i began to improve over the next few months. Eventually i felt about 90% back to normal for about the next 2 months with the exception of numbness in my face and extremities, occassional dizzy spells and intermittent fatigue (fatigue is more managable with a brief afternoon nap). I can't explain why my symptoms increase and decrease in severity overall. This last stent has been about 3 months now, with the addition of muscle fatigue, joint aches, neck/collar bone aching, chest tightness/pressure and weasing. The only thing that i have noticed has an impact on my neuro symptoms is being in the sun. oddly enough just walking my kids to the bus stop causes me to feel increased wooziness, fatigue, thought, speech, balance/coordination difficulties. Originally i thought it was due to the warm temperature and/or humidity impacting inflammation, but only now realize the sun is probably the culprit. I notice an improvement in these symptoms after i get back indoors, but it causes me to feel wiped out. I haven't noticed a correlation with diet, but am now cautious of dairy products

Now that it seems like my recent 3 month stent of neuro symptoms might be beginning to relent, i seem to have a little more tolerance of the sun. (Ex. I can tolerate outdoors on an overcast day.) Given how the symptoms increase/decrease, i'm wondering if there is an optimum time to test my d-ratio.

Thanks for taking the time to read such a detailed account of my sx. I am trying to understand as much as i can as i am about to present the physicians papers to my dr. Any info you can provide would be appreciated. Thanks. smc
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-11-04 06:25

Hi SMC,
Your symptoms sound so very familiar to me. I have experienced most all of them at one time or another. Your increase and decrease in your symptoms is due to D. You have already proved it to yourself with sun exposure. You need to cover every bit of exposed skin when out, even on overcast days. Wear your Noir sunglasses also, even indoors. For the facial areas you cannot cover I use Nizoral cream. It is a prescription -- ketaconazole, and must be 2%, not 1%. I find that it does help but is not to be used exclusively. It is only to augment your clothing coverage. We have approx. 20 times the receptors and absorb that much more D than we should. It takes only a few moments of exposure to throw us into an exascerbation of symptoms.

The same principal applies to diet. You just can't cut back, you need to totally eliminate it. Please read this thread Vitamin D Levels in Food.

Caroline
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Tanya (---.proxy.aol.com)
Date:   10-11-04 08:04

Hello

I have read with interest many of your coments about Vit D toxicity and over exposure to the Sun and do not know quite what to make of it. I am one of millions of people that suffer with S.A.D (seasonal affective disorder) and so absolutely worship the sun and am at my most happiest, energetic and creative when Summer arrives or we are lucky enough to have the odd sunny day in Autumn (I live in England!!!). I am now in the early stages of S.A.D once again due to it being Autumn and returned a month ago from a beautiful holiday in Jamaica where I felt quite well indeed. However on returning I noticed a few new granulomas and my gastric problems worsened! I am confused and face a difficult dilemma.......I am hoping to move to Jamaica in a few years time. I wonder how I will cope out there having Sarcoid? Also is it safe for me to use a light box as a way of treating my S.A.D? is that safe?

Tanya
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-11-04 10:19

Tanya,
Sarcoidosis is a systemic progressive disease. You will become more ill as time goes by unless you make a decision to halt the progression. We have presented the information which may be found by reading the 'Patient Tutorials' at the top of this page.

There are also two very important items to read and take to your physician found here: Sarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away.

Perhaps a better plan would be to place regaining your health as the first priority. Only you can make this decision.
Caroline
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Julia (---.cache.pol.co.uk)
Date:   10-11-04 13:06

Tanya,

Hey, our UK weather isn't that bad!

S.A.D. doesn't kill you, as far as I know, though the depression can presumably make you want to end it all. Sarcoidosis will do the job for you. You have to decide which is more important to cure.

Give it a try - and what better time of year to do it. Try two weeks without any sun, or light boxes, or vitamin D in the diet. Get support ready from friends and family, because the depression may be bad. But I think you'll find an improvement in your sarc symptoms that will show you the right way to go. It was that two week trial that convinced me that Trevor was on to something, and I went on the MP asap. Improvement has been fantastic.

And I wouldn't be surprised if your SAD syptoms responded to the MP eventually - but that's only a guess. Perhaps Trevor could comment.

All the best,
Julia
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lottie (---.proxy.aol.com)
Date:   10-11-04 19:57

Tanya

One good example of why you feel better in the sun is that while your 1,25 D is elevated, it acts as though you have taken Prednisone in that you may feel better, but your immune system is unable to kill bacteria while it is elevated.

Then, after you have been out of the sun for a while, it has the same affect as stopping Prednisone. The symptoms come back, and they’re worse, because the bacteria have been given free run of your body, and they have multiplied, so that there are more than there were before you spent so much time in the sun.

The first thing that you need to do if you want to get rid of the bacteria that are making you sick is to please avoid all forms of vitamin D in food, supplements and sun. You will be amazed at how much better you will feel. If you must go out in the sun, please cover up completely! Long pants, long sleeves, hat, scarves, and gloves. Also, obtain the NoIR glasses as indicated in this article Protecting your eyes in Sarcoidosis. You also need to block the windows so that you aren’t getting hit with light coming into your home as well.

Here is information on Avoiding Vitamin D while on the Marshall Protocol. It is located on our sister site MarshallProtocol.com. As is the article Advice on how to approach your doctor at the Marshall Protocol.com thread, which you may find useful.

Be sure to have your doctor order the D metabolites tests and others as noted in this article, "How does Doctor measure my ACE, and my D-metabolites?". Be SURE THAT THE LAB KNOWS THAT THE 1,25 D SAMPLE MUST BE KEPT FROZEN in transit and until testing is done. When you get the results, please obtain a copy, and post the actual numbers from the results on the thread *** My Vit. D and ACE Test Results ***, and we will help you evaluate them for your doctor. Do NOT accept the generalization that they are "within normal limits". We need the actual numbers These tests will show the amount of inflammation that is going on in your body.

If your doctor won’t assist you with the Marshall Protocol, and you have difficulty finding a doctor who will assist you with it, please Post a Request for DOCTORS at MarshallProtocol.com, and the moderators there can access the list for doctors who may be more open to using the MP.

No, a light box is not safe for you to use. If you have Sarcoidosis, you must stay out of the sun, as it will increase your depression as well. As Julia said, stay out of the sun, and avoid ALL vitamin D for two or more weeks, and see how much better you feel. And, I'm not talking about "cutting back", I'm talking about eliminating from your diet, and avoiding the sun, covering up when you go out. You will then notice the difference in how you feel when you go out in the sun for a short period.

Keep in touch,
Lottie
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: sue (---.glst3401.nj.comcast.net)
Date:   10-12-04 09:32

Caroline,
Is there an optimum time to have my d-ratio retested. Ex: does it make sense to wait for a really bad day,week or month with respect to the severity of my symptoms? Or will they test equally as high even during a period of improvement in my symptoms? In your last post to me you referred to the doctors looking for the "smoking gun". For some reason I too keep looking for that "smoking gun". thanks for your input. smc
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-12-04 10:25

SMC,
Dr. Marshall has indicated that the D ratio is not reflected as obviously in neurosarc. Try not to focus so much on this now as you have just recently been tested. Keep daily records of your dosages, symptoms and blood pressure.
Caroline
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: sue (---.glst3401.nj.comcast.net)
Date:   10-12-04 16:14

caroline,
will do. thanks again.
smc
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Tanya (---.proxy.aol.com)
Date:   10-14-04 12:45

Lottie

Thanks so much for your comments. I just don't know how I will cope with living in a very hot country (Jamaica) and protecting myself as well as needed from the sun. I can't say I feel any better when there is no sun at all (which is nearly all year round in England!) the symthoms are no different really but I will actively watch my diet and try the other things you suggested and then just hope and pray that the MP will be the answer once I get it! I am seeing a Dr Beynon tomorrow at the Roayal free Hospital so wish me luck!

Tanya

PS. It would be interesting to hear how people living constantly in a hot climate cope with Sarcoid!
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lottie (---.proxy.aol.com)
Date:   10-14-04 19:23

Tanya,

Remember that the sun's rays that cause our problems have an easy time getting through the clouds. By virtue of the fact that you can still tell it's daytime, indicates that not all of the sun's rays are blocked by clouds and fog.

You still need to cover up.

And, the sun coming in windows is just as much of a problem for you, as well as standing in the shade. The rays reflections will cause you problems as well.

You may not be as comfortable in a hot climate, at least until you are able to reduce your bacterial load. I also notice my symptoms show up if I get hot, even if it's inside and at night. The rotten little bacteria that are in our skin and sweat glands seem to react to heat as well as sun. I often have my fan on me while others are comfortable.

I do wish you luck with the doctor!

Let us know what happens!!

Lottie
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Kim from Florida (---.se.client2.attbi.com)
Date:   10-28-04 19:48

I am 35 years old and I have had three non-cancerous lumps on my breasts within the past 9 months. Is this a symptom of hypervitaminsis D?

I have had a blood test that showed I tested positive for scleroderma. However, it does not appear that I have this illness. Could hypervitaminosis cause a false positive on a blood test for scleroderma?

Is bruising also a symptom of this illness?

I have some of the symptoms described on this web site. However, I have not yet been tested for hyperviaminosis D. Similiar symptoms that I do have are fatigue, pain in my ribs, "brain fog", tightness of the throat muscles, nocturia, sweating, muscle cramps and eye problems.

Thank you!

Kim from Florida
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-28-04 21:37

Hi Kim,
Welcome to SarcInfo. The only way to be sure if you have a Th1 inflammatory disease is to have your D Metabolites tested. A complete tutorial on how is here: How Does Doctor Measure My D Metabolites. It is not unusual for cancer to be suspected in sarcoidosis patients.
Caroline
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: marie (---.state.nj.us)
Date:   11-23-04 06:32

Does your Vitamin D on the two blood tests need to be high for these symptoms.
I had my doctor run them recently. I am still undiagnosed-Chronic Lyme, Lupus, Rheumatoid Arthritis, Fibromyalgia. Also any information on thyroid tests. Recently I had two consecutive blood tests with a low TSH but T3, T4 are normal? Any information please.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: marie (---.state.nj.us)
Date:   11-23-04 06:54

Does sarcoidosis cause lesions on the brain? and psychiatric symptoms-and if so, what ones? The pulmonary doctor had found some neuromuscular weakness around my lungs. Is this a symptom of sarcoidosis-but nothing else shows on chest x-ray.

Can this protocall be used for other diseases-Lupus/Lyme, etc. Can you take antibiotics with it?
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-23-04 19:53

Hi Marie,

Welcome to SarcInfo. A high 1,25-D and a low 25-D are the classic presentation of Th1 inflammation. But there are many reasons why those tests would not present a classic picture. People with a lot of symptoms of hypervitaminosis-D usually have a high 1,25-D and a high D ratio. When you get your tests done, post the actual numbers here or on www.marshallprotocolcom. We will be happy to help your doctor analyze the test results.

I am not qualified to help you understand your thyroid tests. If your doctors explanation was unsatisfactory, you can post this same question on www.marshallprotocol.com where you will find many people familiar with the intricacies of thyroid testing.

Sarcoidosis can cause lesions in the brain, psychiatric symptoms and weakness of the muscles that assist breathing. But these symptoms do not necessarily mean that you have sarcoidosis.

The Marshall Protocol targets all Th1 inflammatory diseases, including Chronic Lyme, Lupus, Rheumatoid Arthritis and Fibromyalgia. With all these diagnoses, you don't need to look for another! The MP will help you put them and and Th1 symptoms into remission.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com which deals with more of the Th1 diseases.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lynne Guimond (---.citenet.net)
Date:   11-25-04 07:50

Hi Kim
I have has scleroderma for 7 5 years and had all those symptoms at the beginning.A year later I started to have serious skin problems.This is a potentially fatal disease if it runs it's course.Antibiotics work for a large percantage.Maybe if I had started an antibiotic protocol earlier I would not be in the mess I am today. Lynne
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Louise (---.tacom.army.mil)
Date:   12-14-04 09:09

Question brusing? I am Sarcoid. What is the brusing a systom of?
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-14-04 17:41

Hi Louise,

Welcome to SarcInfo. Bruising is commonly associated with prednisone. Are you taking that? There is information on bruising in the thread Skin Sarc, What Does It Look Like?

Sarcoidosis must be treated correctly with the Marshall Protocol in order to get well. Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Julia (---.cache.pol.co.uk)
Date:   12-15-04 15:32

Meg, Louise,

I've had bruising without ever having taken Prednisone. So it might be a sarcoidosis symptom.

Julia

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Elsie Hokins (207.191.125.---)
Date:   12-29-04 10:34

I am one of the luckiest humans alive!! Looking on the web for BenicarHCT info and found this - symptoms, symptoms, and more symptoms! I had a super strong immune system that got me through all the early childhood diseases with hardly a ripple, and into adulthood with a slim, healthy body - but with a lot of "conditions" as the docs said. I have had epicondilitis, myocarditis, about every "itis" you can name but still checked out super healthy - blood test always show I am supposed to have rheumatoid arthritis, but no symptoms. Then in 1991 I had breast cancer (epithelial tissue attacked), 10 days later had surgery for bladder cancer (inner lining epithelial tissue attacked), and then 4 years later had melanoma in my left eye (epithelial tissue attacked). Have been cancer free for the past 10 years, but, of course, since VitD and Calcium are recommended cancer preventives, I took a daily dose (also I should mention I have since infancy suffered from lactose intolerance and anemia, so drs always recommended losts of sunshine and VitD supplements. I have been diagnosed with chemo-induced osteoporosis and chemo-induced hypertension - the hypertension just reared its head about 3 weeks ago - went from 120/72 to 220/120 in less than 4 days. Was prescribed BenicarHCT-20mg/12.5mg - and BP is now getting back close to normal range - BUT I NOW FEEL I HAVE FOUND THE UNDERLYING PROBLEM
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Pippit (---.asm.bellsouth.net)
Date:   12-29-04 20:41

Hi Elsie,

Welcome to Sarcinfo. Please read the Phase I guidelines carefully at http://www.sarcinfo.com/phase1.pdf

The recommended medication is the regular Benicar; not Benicar HRT. That one has a diuretic in it and can cause complications. The dosage you mention in your post is the dosage for blood-pressure control, but this protocol uses a higher dosage for the treatment of Th1 diseases (autoimmune).

Please read the above papers, print them out, and take them to your doctor. It seems you have been reading some already on the site about the disordered Vitamin D metabolism involved in these disorders. You might also ask your doctor to run a 1,25-D blood test. This is the single best indicator of Th1 inflammation. If the numbers come back high then it is likely the protocol will help you. Please post these actual numbers on the General Questions thread or Vitamin D Test Results thread.

Please also post all the medications you're currently on and any supplements you have not yet mentioned in this first post even if they seem insignificant.

Begin avoiding sunlight and bright light of other types by covering up, limiting outdoor time, and obtaining a pair of Noir sunglasses. There is a link here; http://www.sarcinfo.com/protecteyes.htm to this information. Also watch your diet to make sure the foods ou're eating do not contain Vitamin D, such as milk, fish, etc..., and discontinue all supplements.

You can also find information on our sister site,
http://www.MarshallProtocol.com and there's a special doctor's forum where your doctor can ask questions of the researcher of this treatment, Trevor Marshall, Ph.D, based on your specific case in a confidential environment.

After you've done some more reading let us know if you or your doctor have any specific questions.

Keep us informed of how you're coming along,

Pippit
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-29-04 21:05

Hi Elsie,

Welcome to SarcInfo. You've certainly had a lot of medical problems for someone declared "super healthy".

If your current symptoms are related to a Th1 immune system response to occult microbes, the D-metabolites test should indicate that. BASIC BLOOD TESTS FOR THE MARSHALL PROTOCOL will tell your doctor what blood tests to order.

You can begin avoiding all sources of Vitamin D and sun/lights to see if it makes you feel better.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Bonita Neher (---.nas17.albuquerque1.nm.us.da.qwest.n)
Date:   12-29-04 21:24

When I first found this website, I jumped for joy, then I went thru a period of disbelief that the sun could make all the problems I have really bad. So, I covered my windows and my body when I went out and sure enough in two to three weeks. I felt pretty good and got a great night's sleep. Then I went out without being covered and boy did I pay the price. Eye pressure was unbelievable, pain was severe, fatigue was severe, irritability bad, etc. So I stayed in again and it all calmed down without even starting the MP, but I start Benicar tomorrow. I am looking forward to keeping the good feelings and losing all the bad ones. Sooooo, if you don't believe this site, just try staying out of the sun and off Vit D in foods and supplements and just see how far that will take you. You will be totally amazed. Seeing is believing!!
Bonita
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   12-29-04 22:34

Bonita,

Thanks for letting people know that you, too, were skeptical about sun and vitamin D sensitivity -- until you tried it. Once a patient experiences the improvement in their health from abstaining from sunlight.. well, it's (as they say) a "lightbulb moment."

Many of us who enthusiastically urge patients to avoid sunlight and vitamin D were also once very skeptical. Thank goodness for Trevor Marshall, who helped enlighten me.

Best wishes,
Belinda

*MODERATOR* Dx: FM 80's, sarcoidosis '01; Lung, skin, spleen, liver and neuro. Refused Prednisone. 7/02 1,25-D 61.1, 25-D 14.3. MP since '02 PhaseIII with symptoms gone, slight Herx. Improved PFTs, CTs, X-ray, energy and stamina. I walk 3-4 mi daily now
 
 minocycline and herx reaction
Author: Lavance (---.oc.oc.cox.net)
Date:   02-12-05 02:03

My wife was diagnosed with Sarcoid last month. It was found in her lungs and some lymph nodes under her armpit and in her abdomen. So I began to do research and found this sight along with others highlighting the theories developed by the Marshall's. My wife had been taking minocycline for 3 years for acne until May of 04 upon which time she came off the medication because a doctor told her she shouldn't be on it for that long because of the problems it can cause with your kidneys. I started noticing Sarcoid systems from my wife around June of 04, but she didn't go to the doctors for the symptoms until December because the systems in her lungs and the fatigue became too great. During the time that she was on minocycline, she didn't have any noticeable herx reactions that have been spoken of here nor did she experience any signs of Sarcoid until she came off the medicine. Do you think there's any coorelation between her developing Sarcoid due to taking the minocycline or do you think it had been developing all of this time but unnoticed because of the minocycline? What about kidney problems and minocycline? Your thoughts are greatly appreciated.

Lavance
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lottie (---.proxy.aol.com)
Date:   02-12-05 03:38

Lavance,

Welcome to SarcInfo.

The minocycline didn’t cause the Sarcoidosis. At the dosage of minocycline that she was probably on for acne, she wouldn’t have herxed. At normal dosage levels it would act as an immunosuppressant for the bacteria causing the Sarcoid. It was probably preventing her immune system from killing the Cell Wall Deficient (CWD) bacteria that are causing her illness.

CWD bacteria have not only learned how to hide from the immune system, but to live within the immune system which is supposed to kill bacteria. Benicar is an ARB which allows the immune system to locate, and kill the CWD bacteria.

She has probably had Sarcoid for a long time, and it was no doubt worsening because of the immunosuppressant effect it has at normal dosage. I was only diagnosed with Sarcoidosis in 1999, but now I can remember incidents from over 30 years ago that were probably related to Sarcoid.

The Marshall Protocol uses minocycline at very low doses at intervals of every other day, adding other antibiotics when she no longer has herx at 100mg every other day.

Benicar also assists by protecting the organs (including the kidneys) from the inflammation that is caused by the bacteria dying.

To help her start to feel better, she should begin to avoid ALL vitamin D from food and supplements. The best way to avoid it in supplements, is to not take any supplements. If she does take them, she should be sure to read labels and avoid any with D in it. She should also avoid foods which contain D, including but not limited to fish, fish oil, eggs, and fortified dairy products.

She should also avoid sunlight. She should cover up completely whenever she goes out. All windows should be covered, and you should order NoIR sunglasses for her to wear inside and out.

She also needs to avoid Prednisone, and any other immunosuppressants that she may be prescribed. The MP is the only treatment which will assist your wife to recover from Sarcoidosis.

Please check your email inbox for further information, and let us know if you have any other questions.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lavance (---.oc.oc.cox.net)
Date:   02-14-05 00:34

Lottie,
Thanx for the response. We feel extremely lucky to have found this sight and are excited to get started on the MP treatment as we knew Prednisone wasn't an option for us. Is Dr. Sharma from USC familiar with the Marshall Protocal? We have an appointment with him in 3 weeks. I also read in an earlier email from Trevor to another patient that there may be a correlation in treating Sarc (Th1 disease) and Asthma (Th2 disease). He mentioned that a number of Sarc patients that were on the MP treatment saw a decline of asthma as well. I know this is a Sarc chat room, but my entire family suffers from Asthma as well, so I thought I'd ask. Is there any noted correlation worth mentioning?

Lavance
 
 Re: *** Hypervitaminosis D Symptoms ***
Author: Lottie (---.proxy.aol.com)
Date:   02-14-05 02:14

Lavance
All that I can tell you about Dr. Sharma, is that I don’t believe he has educated himself about the Protocol. I do know for a fact that Dr. Sharma has had no contact with Dr. Marshall during the last three years.

I also know that many people are diagnosed as having asthma, and later found to have Sarcoidosis. I was diagnosed as having "reactive" asthma about 20 years ago. I suspect that it was really a "flaring" of the symptoms of Sarcoid.

Many doctors are not at all familiar with Sarcoid. Mine wasn’t. He admitted it, and asked me to help him learn what he needed to know to help me. This was before the MP made it’s way to the internet.

When my heart inflammation became apparent again, while on Prednisone, he asked me once again to learn what I could, this time specifically about Cardiac Sarcoidosis. That brought me to SarcInfo, and my doctor and I learning the Marshall Protocol. He still grins when the fact that I’m off Prednisone comes up.

It would be an easy thing for your family members to have their D metabolites checked, and post the actual lab results so that we can help their doctors determine if they do indeed have a Th1 illness, which may be causing their problems.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

Moderators' Note: Please do not post in this topic. It is too long to load. Post in the current thread at this link -- "Hypervitaminosis D Symptoms"
 
 Re: Do not post here: Archived Hypervitaminosis D Symptoms
Author: Vickievelyn (---.hsd1.or.comcast.net)
Date:   03-20-07 21:16

Hi, I wonder if someone can clear this up for me. About 6 months ago, I was diagnosed as having too low a vitamin D presence in my system. I had no idea of the relationship between Sarcoid and vitamin D at the time. My doctor prescribed a very high dosage of vitamin D for about a month and then lowered it.
I began to read about vitamin D and Sarcoid and was very confused so I asked my doctor. She said that this problem didn't apply to me. Yet I had all the symptoms of too much Vitamin D like a really bad reaction to sunlight.
I stopped taking the vitamin D supplements because I wasn't convinced I was better with them.
Do Sarcoid patients normally have a lower vitamin D amount than other people? Are they supposed to?

Vicki
 
 Re: Do not post here: Archived Hypervitaminosis D Symptoms
Author: Julia (---.dynamic.dsl.as9105.com)
Date:   03-21-07 15:39

Hi Vicki,

This site is linked to the site www.MarshallProtocol.com, where you're already being given answers to your questions. The same moderators are at this site, but they prefer us to use the newer MP.com site.

Sarc sufferers don't need any extra vitamin D, as we make more than enough of our own. What your doctor is measuring is 25D, which is the inactive fuel that our body uses to make 1,25D, which is a steroid hormone and not a vitamin at all.

Confused? Click on the blue links in Meg's answer to you in your own question thread at MP.com. They explain how "vitamin D" works. There's quite a lot of reading to do, but it's well worth it!

Now that you've found the only treatment that will give you more than temporary relief, concentrate on learning all about it. I thank God for the day I found this site, because now I'm able to lead a normal life

Good health!

Julia

Belfast, UK. Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Benicar 4x40.
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This is an archive site, membership and posting are no longer allowed.

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
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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