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 The material here provides useful background, but much of it is now out-of-date.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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 Supplements for Improving your Immune System
Author: Tom Rogers (---.biz.rr.com)
Date:   06-11-03 11:08

Are there any good ones that help build the immune system up, yet does not make Sarc worse?

Thanx,

-Tom
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-11-03 13:05

Tom,
Sarcoidosis is caused by an overactive immune system allowing inflammation to spread out of control. Why would anybody want to strengthen their immune system and make the inflammation even worse?

Vitamin D stimulates the immune system. It can help the body fight some cancers. But it the the very worst thing you can have for chronic sarcoidosis.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Tom Rogers (---.biz.rr.com)
Date:   06-11-03 13:13

Sorry, I thought strengthening the immune system would help to kill off the bugs quicker also.

-Tom
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-11-03 13:39

Tom,
You are sort-of on the correct track. The issue is that you need to get most of the microbes killed off. That will cause your 1,25-D to fall below normal, (and your Blood Pressure), and you will need to take D supplementation (or foods) and start going outside again in order to get the 1,25-D back to normal.

The 1,25-D is what activates the immune system, and that's why you need to try and keep it in the normal range - around 29 pg/ml if you have no symptoms, and between 20-25 pg/ml if you still have symptoms.

The 66IU Vit D softgels used to make my heart race - and I sure knew I had taken them. Nowadays I can take 2 and never notice the difference. The key thing is to kill off the bugs that are hypersensitizing your immune system.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Tom Rogers (---.twcny.rr.com)
Date:   06-11-03 15:47

When I take Vit D (400iu) 100%, I would get these really bad dizzy/lightheaded/near-faint episodes that would last 5-10 seconds. One time, one lasted for a long time and I went to the ER about it. None of us had any idea - they said Labryinthitis.

Someone pointed me to your website, I dropped the Vit D supplement and have not had one since.

-Tom
 
 Re: Supplements for Improving your Immune System
Author: Christian (---.ipt.aol.com)
Date:   06-11-03 16:01

Tom,

I know what you're talking about. Some time ago, a doctor ordered the 25D to be measured; it came back around 14 pg/ml. So Doc suggested I take 400 IU of Vit D a day. I would also get "these really bad dizzy/lightheaded/near-faint episodes ". I took the multi vitamin for a few weeks and discontinue taking it because I felt much worse than before. At that time I knew nothing of the D metabolism, but my body told me a lot about it! You're not alone.


Christian
 
 Re: Supplements for Improving your Immune System
Author: bpeck (---.dialup.mindspring.com)
Date:   06-11-03 19:26

OK- I'll throw this out there...
Trevor:

What do you think of CoQ10, Alpha-lipoic acid, Gamma Vit E and OPCs.
These are all antioxidants that I use currently or have in the past
(from standardized labs/mfgs with Certificates of Analysis )
and I think it helped my body deal with the effects of inflammation.

They're not immune enhancers per se, but they help in reducing oxidants (and I also know that after electron exchange an anti-oxidant eventually becomes an oxidant itself)

I also realize that what I use, may or may not be recommended for Sarc.
Whats your opinion about these?

Barb
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-11-03 19:31

Barb,
I personally used 1000mg Vit E and 25,000 IU Beta carotene every 6-8 hours or so during the decade of the '90s to help me survive until the cure came along. Used to crunch them in my mouth. They worked well at suppressing small exposures to light and Vit D, but totally failed at higher exposures. Disclaimer: Doses of Beta Carotene this high can become toxic, and I certainly don't recommend anyone follow this procedure nowadays. ARBs are MUCH safer and MUCH more effective.

I used an electronic massage unit (which I bought in Japan) to alleviate migraine pain. Sometimes it was even effective in actually stopping the migraine. It seemed to work by stimulating endorphins, but I don't really know.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Alexia Nicoloaou (---.force9.co.uk)
Date:   02-18-04 06:25

Does anyone know whether it is OK to take Zinc supplements and Evening Primrose Oil with Sarcoidosis and what are the best supplements to take.
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-18-04 06:46

Alexia,
There are no supplements which will help cure your sarcoidosis. Evening Primrose Oil usually contains a few micrograms of Vitamin D - the last thing you want to be taking.

Get Doc to measure your D metabolites - that is the first step to getting better.

..Trevor..
ps: if you read messages at the top of this thread they explain why you do not need zinc. The last thing you need to do is 'strengthen' your immune system, It is already way, way, way over 'strength' (hyperactive, in fact).
 
 Re: Supplements for Improving your Immune System
Author: Alexia Nicoloaou (---.force9.co.uk)
Date:   02-18-04 07:17


Thanks for that info. It's actually my mum that has Sarcoidosis and has been taking Evening Primrose for years. Are B vits OK ?
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-18-04 18:38

Hi Alexia,

B vitamins usually contain folic acid which makes it easier for the bacteria to replicate and create new DNA. Your mother should avoid supplements containing folic acid and products, like white flour, which are fortified with it.

Meg
 
 Re: Supplements for Improving your Immune System
Author: Alexia Nicoloaou (---.force9.co.uk)
Date:   02-19-04 00:36


Thanks for that Meg, she actually takes a Folic Acid supplement for other health reasons - she has Thalasimia (Mediterranean blood disorder) which leaves her feeling weak unless she takes it. Are there any vitamins/minerals that are safe for her to take. I am concerned as her appetite is very poor due to her feeling unwell and feel she should be taking something.

The doctors have just perscriced her Actonel (Risedronate) which is meant to help her bones - I think it helps absorb calcium. Is this OK to take ?
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-19-04 00:44

Alexia,
No, Actonel is not proven safe in sarcoidosis. In fact it is most likely that it will cause calcium deposition into soft tissue (lungs and organs). See my Calcium tutorial above for the reasons why.

Many Sarc patients have marginal life-long anemia which is sometimes mis-diagnosed as beta-thalassemia. If the folic acid does not correct her anemia (and it rarely does) then it is only doing her harm.

If she has Sarcoidosis then the folic acid supplement is feeding her parasitic bacteria and hastening the decay of her internal organs

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Alexia Nicoloaou (---.force9.co.uk)
Date:   02-19-04 01:58

She has has thalassemia all her life so I don't believe this is a result of mis-diagnoses as a result of her having sarcoidosis. Do you advice her to stop it in this case. Should she talk to her doc about Actonel ?

Which vit/minerals are safe ?
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-19-04 02:06

Alexia,
Sarcoidosis is also a lifelong illness. Have you read the tutorial "Why Me" at the top of this page?

She should talk with Doc about both these issues. Doc should feel free to call me if he/she has any questions. Our phone number is on all our papers.

Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date:   02-19-04 11:58

I take Moducare. It balances rather than stimulates the immune system ( unlike Echinacea) and has been scientifically proven to be of benefit in autoimmune diseases and even for HIV/AIDS. I feel good on it and I have to admit to not getting so many infections from the kids I teach since I started about 6 weeks back. There is a good website on Moducare, if you want to learn more about this natural ( plant strerols and sterolins) product.

I also take a few antioxidants - Co 10, grape seed and vit C and milk thistle. My last lung CT showed no change for the worse, so I presume they are , at least, doing me no harm and my energy levels are excellent.
 
 Re: Supplements for Improving your Immune System
Author: Lucille Tompkins (---.cvx.algx.net)
Date:   02-20-04 09:00

Just read an article in the magazine called WOMEN'S WORLD ABOUT SARCOIDOSIS. 20mg of MELATONEN is beneficial for sarcoidosis. Can you comment on this. Also read an article a few years back where a study was done in Italy that 20 mg. of melatonen was successful in treating sarc.
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-04 09:49

Lucille and others,
Oh for Heaven's sake, folks. THERE IS NO SUPPLEMENT WHICH WILL HELP YOU RECOVER FROM SARCOIDOSIS.

Forget it, it ain't going to happen. There is only one effective treatment, one effective cure.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-20-04 09:53

Lucille,

Thanks for the info about the article in Women's World. It's too bad that we can't get that kind of publicity.

Melatonin is a hormone produced by the pineal gland. It helps keep our wake-sleep cycle in synch with day and night and it is considered an antioxidant. A variety of factors may suppress the natural production of melatonin, including alcohol consumption, lack of sleep and insufficient exposure to darkness. There are a variety of factors, however, that influence sleep and not all of them are subject to the hormone's control. Its best application is for correcting a deficiency, which becomes more probable as we age, and for occasionally readjusting the wake-sleep cycle.

1,25-Dihydroxyvitamin-D is a powerful hormone that affects all the other hormones in the body. The elevated levels of 1,25-D in sarcoidosis would likely affect the level of melatonin. Perhaps that is why hypervitaminosis-D often causes sleep disturbances.

But we know that it is bacteria that trigger the abnormal immune system response of sarcoidosis in susceptible people. Melatonin has no effect on mycoplasma that I know of. Therefore, I would presume that any desirable effect that was demonstrated in a study would have simply been mild symptom relief. Getting your 1,25-D back to normal levels with the Marshall Protocol is the best way to help your body balance the many hormones needed for healthy function.

Melatonin is reportedly safe at the usual therapeutic levels of 2-3mg at bedtime. I would not take a higher dose unless I saw scientific studies demonstrating its safety and effectiveness for sarcoidosis patients.

Meg
 
 Re: Supplements for Improving your Immune System
Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date:   02-20-04 10:57

Trevor, our mentor!

I think we all know that the only cure for sarc is the MP, or we would not be here, but is there really any harm in taking supplements to balance the immune system? Perhaps in conjunction with your protocol, they will keep us healthier all round? Being on antibiotics or any drugs long term can deplete surely also deplete the body of necessary vitamins and minerals etc.
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-04 11:13

Karen,
90% of the supplements are worthless. 5% are beneficial, 5% are harmful. The problem is determining which is which. The ones with hidden Vit D in them are the most harmful. Vit D tends to be addictive (for sarc patients) and it is often hard to sense a problem is occurring until your plasma levels have built up so high that a relapse occurs.

I understand what you are looking for (I myself took high dose Vit E and BetaCarotene when there was nothing else) but now we have Benicar, and that is 100% better at dealing with the symptoms than anything else.

Probiotics are fine...

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Lucille Tompkins (---.cvx.algx.net)
Date:   02-20-04 12:24

Sorry if I mislead you Trevor. The article in Women's World 2/24/04 said as follows:

"...In one study, individuals with sarc experienced IMPROVED BREATHING AND OTHER BENEFITS after taking 20 mg of melatonin" It never said cured it. I have had sarc for 39 years and have "severe chronic parenchymal changes of sarc. Nothing will help me but I thought I'd pass along the info.
.
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-20-04 12:36

Lucille,
"Nothing will help me"
While it is true the fibrosis does not go away after cure, your FEV1 improves as your muscle tone returns to normal and your DLco improves as your remaining lung tissue starts to recover from the inflammation. That means that your breathing gets better. Kirk was on 24/7 oxygen and now uses it only at night, moving freely around during the day. I was starting to have trouble with stairs, now I can whip up and down them without fear of hyperventilating. So even the physical damage visible on a CT or Xray does not hinder recovery all that much.

It is never too late...

..trevor..
ps: contrary to the lies you read about it (from people who should know better), fibrosis is inert, and contributes not at all to the symptoms of Sarc. All the fatigue and other neuro problems disappear with the active inflammation... You actually do get your life back...
 
 Re: Supplements for Improving your Immune System
Author: Brian (---.oc.oc.cox.net)
Date:   02-20-04 21:55

Trevor

Are you aware of any issues in taking any of the following :

Prostata - It contains - lycopene, selenium, vitamin e, vitamin b6, zinc, copper, nettle extract, saw palmetto, cucurbita pepo extract, pygeum africanum extract , l-gluamic acid, l-glycine, l-alonine

Move Free - Contains sodium, Glucosamine Hydrochloride, Chondroitin sulfate.


I take 2 of each of the above each day with my BP meds - Lotrel, Ziac, Catapress and in addition Protonix. I would be interested to know if they have any effect on the sarc or 1,25D.

Brian
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-21-04 07:29

Hi Brian,

I am not aware of any contraindication to taking the Prostata, Move Free or Protonix. I would expect that as your sarc inflammation resolves that you will no longer need supplements for your joint pain or stomach distress.

Meg
 
 Re: Supplements for Improving your Immune System
Author: Arlene Kollendar (---.30.233.199.Dial1.Atlanta1.Level3.net)
Date:   02-21-04 12:12

Have you had any experience with functional medicine? They believe autoimmune disease starts with faulty digestion. I have read that supplements that enhance the immune system are not reccomended, however, I have read some info on supplements that balance the immune system. Can you comment on this? I was hoping to use the Marshall protocol and also work on balancing my immune system at the same time.
Thanks for your help,
Arlene
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-21-04 13:25

Arlene,
Bastiana, from Holland, one of the SarcInfo 'graduates', was an exponent of Anthroposofical Medicine. Is this what you mean by "functional medicine"?

You might like to take a look at the discussion thread she headed up although a lot of the stuff in it has become rather out-of-date already

Anyway, she eventually found that our antibiotic regimen did the job for her, and has thrown off the disease and moved on.

In my opinion, none of the supplements touted for autoimmunity do any good. Bite the bullet and go get Benicar and Minocyline and focus on the future, rather than cling to the past.

Sincerely
Trevor
 
 Re: Supplements for Improving your Immune System
Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date:   02-21-04 14:10

Trevor, are you saying that we should not be taking any vitamins or supplements at all during our treatment? No vitamins, minerals etc? Which are the 'good' supplements for us?

What happens if you get ill whilst on the MP and your doctor prescribes an antibiotic or other medication specific to that illness/ infection? Do you then stop the mino and ( in my case) diovan for the duration of the treatment and then resume it afterwards at the point at which you were at? I just wondered about this, and also if you can take, say a Tylenol or other OTC medications in conjuction with the MP, if needs be.
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-21-04 14:24

Karen,
Soon after SarcInfo started we had somebody taking Evening Primrose Oil (I think?). She had a high 25-D, for no obvious reason. After a lot of enquiry she was told there was a tiny quantity, "micrograms", of vitamin D in it. Well, it turns out that the full daily allowance of Vit D is only "micrograms", and, despite the manufacturer's attempts to downplay it, this was the main source of her problems weaning down her Vit D intake.

So I tend to regard all supplements as a problems because
1. there is no list of published ingredients
2. there is no appreciation by the distributors of what the ingredients do

Additionally, all this talk about "strengthening" the immune system is absolute poppycock. Autoimmune patients have an OVERACTIVE immune system, which certainly doesn't need strenthening - it is too 'strong' already.

The #1 problem with your body is the sarcoid inflammation. Worrying about vitamins and minerals is totally neglecting the harm being done by the inflamed tissues. A decent balanced diet is all you need for recovery. Nothing more. When you get rid of the sarcoid, then it is time to focus on the fine points. But right now your focus must be 100% on getting rid of the inflammation, which is ruining both your mind and body.

Benicar is one of the least cross-reactive of medications. There usually isn't any problems with that (or Diovan). Antibiotics are a different situation. You shouldn't mix them. But, IMO, you still do need to question Doc very closely about exactly what a med is supposed to do, and what tests you can look for to make sure it is working, and not slowing your recovery.

..Trevor..
ps: Tylenol is fine. Once you start Benicar you just won't need anything else.
 
 Re: Supplements for Improving your Immune System
Author: Lynne (205.160.182.---)
Date:   02-22-04 07:24


This morning I stuffed more of the unused bottles of supplements up into a cupboard. I wish I could get my money back.

I tried selenium when I found out my thyroid wasn't functioning correctly. It gave me allergy symptoms. Guess what? It's made out of YEAST. Forget that.

In the past I've tried various multi-vitamins but they all gave me headaches. I didn't understand why until I learned from sarcinfo about vitamin D.

I use Organic Valley vitamin D-free ultra-Pateurized whole milk on my vitamin D-free cereal in the morning. But the stores that sell it are a long drive, so when I run out, I have to use rice milk without D. Rice milk has no calcium. This started to bother me so I bought some calcium capsules that don't list D on the ingredients but do have some random herbs. I took one of these tablets (200mg, you're supposed to take four a day). Guess what? Day before yesterday, I got one of those every bone in my face hurts headaches. I thought it was herx, even though it's never been a herx symptom for me before.

I took ONE capsule. Could this just be from the calcium? Or is there D in one of those other ingredients?

I took some extra Benicar. What really made me feel better was the next dose of minocycline, which I waited a few hours to take to give it a full 48 hours. The headache was gone in an hour.

I already take Synthroid, four Benicar a day and minocycline every other day. That's enough medicine!!

(I hope I've finally learned) Lynne
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-22-04 15:23

Hi Lynne,

I'm glad you are feeling better. There is so much hyperbole in the popular press about vitamin, mineral and herbal supplements that many people have come to think that they must take them in order to be healthy. We want to believe that they will only help us and couldn't possibly do us any harm.

Our concern about this topic is that it diverts from the essential treatment you must follow in order to put sarcoidosis into remission. It can be a lot simpler to buy OTC supplements than to convince your doctor to help you with the Marshall Protocol. That is why we are trying to deemphasize dietary supplements. They may be easy to use but they will not help your sarcoidosis. And those products from the less reputable sources with unknown contents can pose a real threat to our health with their hidden Vitamin D.

Your mistake was in using a calcium product that wasn't pure calcium citrate without anything else. Also limit your calcium intake to no more than the recommended RDA for your age, including food sources.

Folks, save your money. All the fancy talk about balancing the immune system is just lining someone's pockets with your hard earned money. If you have any other questions about specific supplements be sure to ask before buying or swallowing!

Meg
 
 Re: Supplements for Improving your Immune System
Author: Lisa (---.computan.on.ca)
Date:   02-26-04 17:32

I have been taking a "immune system boosting" remedy called "greens plus" since xmas - thinking that I was doing myself a favour. After reading the above links I know realize that I have probably been doing myself more harm and it may explain why I have felt progressively AWFUL over the past 6 weeks or so. The neck ache and headache (which has nly just begun) have climaxed and rendered me practically bedridden. I have stopped taking that stuff immediately.

Also, I had an interesting discussion with my Rheumatologist today. He was appalled that I had stopped taking my Folic Acid (to go along with the Methotrexate I'm on). I told him that I'd learned that it was likely defeating the purpose of the MTX and he said "nonsence! Only in large doses". He then proceeded to prescribe me Leukovorin 5mg (Folic acid!!) for the canker sores in my mouth! Ho Hum. He didn't listen to or care about a word I had said. I do not plan to fill or take the script. Am I crazy or correct? I can tolerate the canker sores - I wasn't complaining about them. He also was strongly suggesting I go back on Prednisone - "to help alleviate the symptoms". I am not interested in simply alleviating or masking the symptoms anymore. I can not be bothered and am not about to discuss with him why I won't - he is not my primary sarcoid. doc. I plan to talk at length with my Respirologist about the Marshall Protocol just as soon as I can get an appt.

Lisa
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-26-04 21:47

Lisa,

Crazy? NO. Correct? YES. I'll email you some information on Prednisone in case you decide to educate that rheumatologist.

I've also emailed you the new guideline to starting the Marshall Protocol which you can share with your respirologist.

Good luck,

Meg
 
 Re: Supplements for Improving your Immune System
Author: Lisa (---.computan.on.ca)
Date:   02-27-04 05:06

Meg,

Thank you, thank you, thank you!
I don't know where you guys find the time to do all this for us - but it is Sooooooo appreciated!

Lisa
 
 Re: Supplements for Improving your Immune System
Author: bpeck (---.bluebird.ibm.com)
Date:   03-01-04 07:25

Lisa:

Herpes Simplex causes cold sores on the lips and face, and what we call
canker sores inside the mouth.

This virus lives in a ganglion in the upper spinal area, and at times when the immune system is suppressed enough - either by drugs, the sun, nutritional or emotion stress, or disease, this virus migrates to the tissues of the face that it's infected beore.

The virus has an amino acid tail, that it augers into the hosts tissue
and starts it's DNA transfer.

Trevor has explain the antibiotic properties of MTX (methotrexate) and how they are a folate inhibitor which is the same antibiotic mechanism as Bactrim (a sulfa drug).

Bactrim cannot be taken long term (and neither should MTX) .

If you have repeated cold sores, or canker sores then in my opinion
the herpes virus is activated you should address that. More Immune supression is that last thing you want of course (i.e. prednisone).... but you also have to be carefull about what you take long-term, and how it affects the body.

Barb
 
 Re: Supplements for Improving your Immune System
Author: Kathy W (---.roadrunner.nf.net)
Date:   03-01-04 09:55

Hi Lisa & Others,

I used to take Greens Plus prior to starting the MP. When I checked I was surprised to find that it contained 115 IU of Vitamin D per tablespoon. This was not listed on the label. (Not a place you would expect to find Vitamin D.)

Kath
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-01-04 10:02

Kathy,
Actually, I would expect to find Vitamin D in every nutritional supplement. It is so misunderstood that the average nutritionist thinks it is always beneficial to supplement, whereas the opposite is actually the case. Occult Vit D is the main reason I suggest avoiding supplements altogether.

Look, for example, at what happened to these folks who were taking dietary supplements which had been loaded with Vit D.

..trevor..
 
 Re: Supplements for Improving your Immune System
Author: Lisa (---.computan.on.ca)
Date:   03-03-04 12:31

Thanks Kathy and Trevor,

I guess you CANNOT trust labels when it comes to this stuff. I have stopped ALL supplements.

Lisa
 
 Re: Supplements for Improving your Immune System
Author: J.B. (---.proxy.aol.com)
Date:   03-14-04 15:10

Is D-calicum Phosphate a form of Vitamin D?
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-14-04 16:01

J.B.,

D-calcium phosphate is a form of calcium. It is not a form of Vitamin D.

Meg
 
 Re: Supplements for Improving your Immune System
Author: Carole (---.proxy.aol.com)
Date:   03-17-04 19:16

I was shocked to learn last night that my Vitamin C tablets could also be contributing to my chronic inflammation! As I referred to a favorite website renowned for integrative medicine, an article reported the following: Rose Hips contains Vitamins A, B-3, D, and E, as well as bioflavonoids, citric acid, flavonoids, fructose, malic acid, tannins, and zinc.

I don't know the amount of D that rose hips may contain, but I assume that "Vitamin C with Rose Hips" should be avoided. I believe I'll save some money and pain by purchasing just plain Vitamin C from now on.
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-17-04 19:23

Carole,
Vitamin D is used in many supplements, and it is often not declared on the label but only tiny traces of it (micrograms) are needed to wreak havoc.

I have yet to be convinced that Vit D really helps anybody in the long run (yes, I know in the short-term it seems to be protective for some folks), but we certainly know that for 10% of the population, those with RA, MS, Parkinsons, Lupus, Sarc and the host of other 'autoimmune' diseases it is positively harmful in the long run.

In the short run, the body seems to be tolerating, or even benefitting from, the D supplementation. Sort of like addiction. While the bacteria are settling themselves in for the long haul...

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: bpeck (---.bluebird.ibm.com)
Date:   03-18-04 05:01

I guess I'll add my 2cents on this topic:

Minocycline, at the dose used by lymies (above 200 mg/day ) can stain the skin, bones and teeth. Since most people with Sarc are taking a much lower dose, no one on this list probably have to worry about this.

People with Lyme have to worry about it, because their dosages are much higher than taken on the MP. I know people who's skin is still stained a year after stopping Mino. Vit. C and other anti-oxidants day will keep this staining from occurring, so it's recommended to take them with the higher doses of Mino.

REFERENCES
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10337289

http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9893512

As far as supplements go, I agree that they won't cure any inflammatory disease, but a combination of the right anti-oxidants, will help the body deal with the damage of the oxidation that takes place in the body during constant inflammation.

But it's not a case where is a little works, more is better - you need the correct balance, as all anti-oxidants eventually give up enough electrons so they themselves be come a free radical.

Barb
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-18-04 05:56

Barb,
The folks with Sarcoidosis might be suffering from the same issues if they had not been following my carefully planned antibiotic guidelines. You will note that 100mg every 48 hours is the maximum Minocycline dose that I suggest for sustained use. This has not caused staining. There is a well-researched reason for EVERYTHING here at SarcInfo.

The same antibiotic regimes, and the use of Benicar, and avoidance of Vit-D, will also help the folks with chronic Lyme avoid problems. Additionally, it looks as though the combo antibiotics we are using are killing ALL the bugs within two years or so, and we will not be taking antibiotics for life as the lymies have historically done.

Sarcoidosis has served as an excellent experimental test-bed for antibiotic therapy of the cell-dewlling bacteria. I hope the folks suffering from Lyme will use the knowledge we have gained to speed their recoveries and lessen the side effects they have gotten used to.

In any case, as this is a supplements thread, Vitamin E is an excellent antioxidant. I used it, and Beta Carotene, (at high dose) for a decade, before the correct therapie came along. You cannot compare the therapies we have developed here with those I used to use. That is the essential message I want to emphasize. After SarcInfo - everything has changed...

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: marilyn (---.server.ntli.net)
Date:   03-19-04 01:03

Can anyone tell me just what citrus bioflavionoids contain and if they are included in vitamin C are they a no no for sarc......

Many thanks,

Marilyn
 
 Re: Supplements for Improving your Immune System
Author: Alexia Nicoloaou (---.force9.co.uk)
Date:   03-19-04 04:42


Anyone got an opion on Licorice and sarcoidosis.

I have found the following information:

Licorice Root is a time-honored remedy for various illnesses due to its anti-inflammatory properties; it stimulates the production of two natural steroids: cortisone and aldosterone.

Surely if it acts as a natural steroid agent, it can't do any harm to those of us that arn't currently taking steroids can it ?
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-19-04 04:47

Alexia,
Why don't you just keep eating the licorice, Alexia. Forget about curing this disease with antibiotics, just trust in the time-proven remedies.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Alexia Nicoloaou (---.force9.co.uk)
Date:   03-19-04 05:36

Trevor,

I would treat this disease with antibiotics if I could find a doctor in the UK who would perscribe it for my mum but in the search to find one I am obviously looking at any little thing that might help her. Please read the UK thread about my experience. There's nothing I would like more then a doctor agreeing to this treatment but as you are aware it is not easy for us in the UK.......... Hope you understand my dilema !
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-19-04 05:45

Alexia,
If licorice could help sarcoidosis there would be tens of thousands of patients getting better. Please try and think through these things a little more deeply.

And, as for your dilemma, I know patients in the UK on Benicar and Antibiotics. They spent their energies figuring out what documents they needed to get to their doctors and in making a persuasive case for help.

It ain't easy. But it is doable.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: bpeck (---.bluebird.ibm.com)
Date:   03-19-04 05:47

Trevor:

Speaking as a "lymie" - I hope NOT to take abx the rest of my life -
my goal is the same as you guys on this list - to get to a point where I
can keep feeling the way I do now with "top -ups".

I understand that low dose Mino doesn't cause tissue staining - but thought it wise to point out to people that higer doses can.

Alot of people do not stick to strict drug (or supplement) protocols, thinking more IS better - therefore wanted to get the Vit C/Mino info into the thread.

And I dearly wish some of the Lyme folks and Drs. would get over to this site - I recommend it often - as I think there's alot of info here Lymies can benefit from.

Barb
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   03-19-04 05:54

Barb,
Sorry if I snapped at you a bit harshly. We are sooo busy these days. Meg and Belinda too. Lotsa good things happening in the background.

All I want to emphasize - IS EVERYBODY LISTENING? - ** stick to the protocol **. As Barb confirms - more is not better.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-19-04 08:50

Alexia and Barb,

Supplements probably help some people and it is tempting to believe that something so easy will effect a real change. The science of supplemental nutrition is in its infancy and it is difficult for the average person to know what is helpful and what might be harmful. I've seen clerks in health food stores spouting vitamin information like it was gospel.

We are concerned that patients direct their energies towards getting on the Marshall Protocol and we know how much energy that can take sometimes. If you are eating a diet of whole foods low in Vitamin D and folic acid, you should be getting most of the nutrients that you body needs. There isn't any supplement that will specifically help your sarcoidosis.

If you are on the Protocol and want to add supplements that you have researched thoroughly and believe to have some advantage to your general health, be absolutely sure that it does not contain Vitamin D or folic acid. This can be hard to do when package labels are vague and the supplement industry thinks adding cheap Vitamin D to a product is a good thing. That is why we give the general advice to avoid supplementation. Unless you are sure of what you are taking, you may be making things worse.

Meg
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   03-19-04 13:31

Marilyn,

Bioflavanoids are an abundant group of pigments that color much of the plant world. They are considered to be valuable anti-oxidants. Citrus plants contain some of these bioflavanoids and they are often teamed with Vitamin C in supplements because they are synergistic. I know of no contraindications to using them if you have sarcoidosis other than the afore-mentioned problem with correct identification of the content of the supplement bottle. Vitamin C is said to stimulate the immune system which is something that sarcoidosis patients don't need. But Trevor has said that a modest amount of Vitamin C, 500mg twice a day, should be okay.

Those who are just beginning the Marshall Protocol and have a high 25-D and anyone who does not seem to be progressing on the Marshall Protocol, should stop taking all nutritional supplements to ensure they don't ingest inadvertant Vitamin D.

Meg
 
 Re: Supplements for Improving your Immune System
Author: marilyn (---.server.ntli.net)
Date:   03-19-04 15:05

Thanks meg....

warm regards, marilyn
 
 Re: Supplements for Improving your Immune System
Author: Dan (---.sea.blarg.net)
Date:   07-07-04 12:45

Hi Trevor and Meg,

You've stated that autoimmune diseases are connected to an "overactive" immune system, which I believe. I've read in many places that the "th1" side is overactive, while the "th2" side is suppressed -- or is it the reverse?!

Anyway, playing devil's advocate, I guess the reason I've been on too many supplements, is the report I read from the Mayo clinic a couple years back, that suggested that autoimmunity, at least in patients with rheumatoid arthritis, was a result of an exhausted immune system. I'm not saying you're wrong(!), just wanted to get your feedback on this study.

---------- snip -------

Your comments?

Dan

Dan, that study was so bad I removed it so as not to confuse the folks who depend upon SarcInfo. There is so much junk medicine out there that the moderators have to try to tread a fine line between allowing discussion on the junk and not misleading folks who are still trying to understand what is up and what is down.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: David Schlesinger (---.gci.net)
Date:   07-07-04 13:49

Meg,
I've been taking a bunch of Siberian ginseng and it seems to coincide with a much easier Prednisone reduction. Its made out of raw ginseng root boiled untio its really strong and I don't know for sure if it is the reason I've been able to come down without the usual effects. Just thought I'd pass it on. Thanks again , Dave
 
 Re: Supplements for Improving your Immune System
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-07-04 13:56

David,
Ginseng always used to make me violently ill, nauseous, migraine, the lot, so I would caution against using it except under the guidance of a licensed practitioner of such medicines.

..Trevor..
 
 Re: Supplements for Improving your Immune System
Author: Dan (---.sea.blarg.net)
Date:   07-07-04 16:29

"Dan, that study was so bad I removed it so as not to confuse the folks who depend upon SarcInfo. There is so much junk medicine out there that the moderators have to try to tread a fine line between allowing discussion on the junk and not misleading folks who are still trying to understand what is up and what is down. "

Hi,

I understand -- I don't want to confuse people either, and one can certainly find all sorts of completely conflicting info on the web. Just thought that because it came from Mayo, it might be more credible, but again, I'm not a doctor.

I did get some feedback from my doctor today re trying your protocol, but I'll post it on the CFS board. (The only problem I seem to have with that board is finding replies to my posts. Is a "search" the best way, and if so, do I enclose my topic in quotation marks for better results?)

Thanks,

Dan
 
 Re: Supplements for Improving your Immune System
Author: Tom Rogers (---.twcny.rr.com)
Date:   07-14-04 20:11

Is it ok to take CoQ10 (how many mg per day)?

Is it ok to take Chromium Picolinate (how may mg per day)?

Thanx,

-Tom
 
 Re: Supplements for Improving your Immune System
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-14-04 21:22

Tom,

We do not recommend that you take any supplements because we do not know how they affect the immune system. We are noting that CFS/Lyme patients who are having difficulty adjusting to Benicar have been taking lots of OTC supplements. It's best to keep things simple so there are fewer variables to take into account when you are assessing the effects of the MP.

Meg
 
 Re: Supplements for Improving your Immune System
Author: Kas (---.mtnk.rnc.net.cable.rogers.com)
Date:   07-15-04 14:06

Tom,

Be very careful with Co enzyme Q10. It has a definite BP lowering effect, and I doubt you want that whilst you are on the Benicar!

I would also be wary of the chromium, which is generally used to regulate blood sugar in diabetics. I used to take it, but found it did nothing for me, so stopped.
 
 Re: copper allergy? Sarcoidosis
Author: Kimberly (---.dyn.optonline.net)
Date:   08-14-05 07:43

I was diagnosed with Sarcoidosis within a year after having an IUD inserted. This was in 1998 and it is not going away but getting worse. Does anyone else have an IUD inserted.
 
 Re: copper allergy? Sarcoidosis
Author: Meg (---.dhcp.eucl.wi.charter.com)
Date:   08-14-05 08:00

Hi Kimberly,

Welcome to SarcInfo. The insertion of you IUD and the diagnosis of sarcoidosis were coincidental events. Sarcoidosis is caused by intracellular bacteria and takes a long time to develop. Please see:

CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL

Sarcoidosis doesn't go away on its own, despite what your doctor may have told you. It steadily gets worse without proper treatement. Please see the link to the NIH ACCESS study at the top of this page.

You can recover from sarcoidosis with the Marshall Protocol. Let us know if you have any questions the MP 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. (MP.com)

Best,

Meg
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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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