Sarcoidosis Answers for Physicians, Nurses and Patients

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

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 The material here provides useful background, but most of this site is now out-of-date.

 

** Patient Tutorials **

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

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

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

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

 

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

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


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 Bone Loss, Calcium, Magnesium and such...
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-01-02 17:07

Karen wrote:
Trevor, since so many sarcoid sufferers are concerned about bone loss, I thought this might be of interest:

In today's issue (Sept 1, 2002) of USA weekend, the "Eat Smart" column by Jean Carper promotes the benefits of magnesium. She says that one of the ten benefits of magnesium is strong bones. "Magnesium is as vital as calcium in preventing osteoporosis", says the University of North Carolina's Mildred Seelig. "It's essential for normal bone metabolism." In a Swedish study, magnesium, but not calcium, helped prevent hip fractures in older women. Tufts researchers found high magnesium intake predicted higher bone mass and less bone loss in older people.

"Many people needlessly suffer pain-including fibromyalgia, migraines and muscle cramps-because they don't get enough magnesium," says Seelig, a leading magnesium researcher at UNC. "Many people worsen the problem by loading up on calcium, which flushes magnesium out of cells," according to Lawrence Resnick, MD., a professor of medicine at Cornell Medical Center. He urges getting at least 1 milligram of magnesium for each 2mg of calcium.

According to Carper, the recommended daily allowance for magnesium is 320mg for women, 400mg for men. Avoid magnesium if you have kidney disease. You need extra if you drink alcohol or if you take diuretics or high doses of calcium, since those all deplete magnesium. Other benefits claimed for magnesium include: helps stabilize heart rhythms, cuts odds of dying from common "ischemic" heart disease (blocked or narrowed arteries), helps normalize blood pressure, improves insulin activity and may cut diabetes' risk and complications, reduces intensity and duration of migraines, aids in sound sleep, relieves muscle cramps and painful myalgias, and contributes to safer pregnancies.

Trevor, do you have any insight into magnesium and how it can help a sarc patient?
Karen

Karen, thanks for your excellent post!
But there are fundamental differences between the biochemistry in a patient with active sarcoid inflammation, and an individual without that active inflammation. The reason that there are problems with bone mass in Sarcoidosis arise because of this altered biochemistry, and every treatment for Sarc patients has to take into account that their biochemistry is working a little differently. The article mentioned supplementation dangers in patients with "kidney disease". but did not, of course, mention the very real dangers in sarcoidosis.

Take, for instance, the fact that Magnesium deficiency is associated with a low value for serum 1,25-dihydroxyvitamin-D3. Not one of the sarc patients who have measured their 1,25-D has a low value. Every one of them is in the top percentile, 99% of the population would have lower values. This is not a good place to start when suggesting magnesium supplementation might be useful in Sarcoidosis

For that is what each of the researchers quoted in the newspaper is suggesting: adding large quantities of magnesium to your diet in the hope of achieving better bone health.

The high 1,25-D of most sarcoid patients does not cause hypercalcemia (dangerously high levels of calcium) solely because the Parathyroid Hormone (PTH) continues to function correctly. Yet magnesium exerts its calcitropic actions by acting on the PTH. Your PTH is still working, so do you really want to play around with it? What might be good advice for IDDM (Insulin Dependent Diabetes Mellitus] patients who don't have sarcoidosis is certainly not good advice for IDDM patients with Sarc!

Some sarc patients took Vitamin D supplements for decades thinking that they would strengthen their bones, only to find out now, when it is too late, that the vitamin D supplements actually made their bones weaker by producing too much 1,25-D

There really is only one answer to bone loss in sarcodiosis: get control of your 1,25-dihydroxyvitamin-D3 and bring its concentration down to normal (and, of course, taper off any Prednisone). This will involve staying indoors amd watching your diet. Both of which may require changes in your lifestyle.

In any case, you need to have your serum 1,25-D tested ASAP and the test repeated whenever you have a checkup. It should be 20-34 pg/ml (in Canada, UK, Australia that equates to 52-88 pmol/L).

Meanwhile, eat a balanced, healthy, diet of balanced, healthy, foods. Don't use dietary supplements unless you know EXACTLY what they are going to do in YOUR body.

So, until somebody comes up with better advice, I suggest you follow the treatment guidelines in our "Remission in Sarcoidosis" paper, which are summarized in this simplified version.

Trevor

ps: A short time ago, Belinda suggested seeking out DOs. Over the next two weeks I expect that you will find a big push from a leading DO to promote what we have found. That should make it easier for all of you to find doctors who have been trained to listen to the patient, trained to try and understand complex issues, and who are trained in issues of diet and nutrition. And above all, they are licensed to prescribe your 1,25-D tests and ARBs with (hopefully) less ingrained resistance...

pps: There is an excellent review article online that explains all of the issues involved in Bone growth, loss and regeneration. While necessarily complex, it does give more detail on all the key issues I have summarized above: 1,25-D, PTH, and the ravages of Prednisone.

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Caroline (---.win.org)
Date:   09-01-02 21:10

Hello Everyone,
This thread hit home to me. Gee, I have been adding 400mg. magnesium daily for leg cramps and of all irritating things, cramping toes. Ever try to walk with toes that won't extend normally? I already have enough trouble walking! I will eliminate mag., any suggestions for the cramping problem?

BTW, I have RLS (restless leg syndrome), also my brother just diagnosed with neurosarc. Just curious if anyone else is troubled with this?

Caroline

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-01-02 21:29

Caroline,
A 'normal' magnesium diet is good and necessary, the FDA says you need 320 mg a day. So do an inventory of what you take in in various foods - you might need a little supplementation. After looking at Dr Mercola's website it seems as though diet and nutrition is a big part of what Osteopaths do for a living. I doubt that magnesium will cure your cramps, though.

The muscle and leg cramps are due to Hypervitaminosis D (1,25-D too high). Mine disappeared when my 1,25-D fell into the low 20's. Same for the neuropathy and lack of muscle control. I don't want to be the bearer of bad news, but it might take 6 months or more for the D supplementation that you took (all those months ago) to clear out of your fat reserves. All you can do is track the 25-hydroxyvitamin-D and make sure it keeps dropping... (meanwhile keeping out of the sun so that your skin does not manufacture even more...)

"Restless Leg Syndrome"? Heck, I just thought I jiggled my legs and feet too much I thought everybody did that...

Keep smiling,
..Trevor..

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: JC Miller (---.nash01.tn.comcast.net)
Date:   09-02-02 04:03

I have been having muscle and leg cramps and thought it was just due to my restless leg syndrome. Looks like we all do have it. I found that eating a Banana helps. low potassium will cause cramps.

Be well,
JC

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-02-02 04:09

JC, Forget about "low potassium" causing cramps. That is not relevant in the least way when talking about the cramps of Sarcoidosis. Your cramps are 10 times worse than "cramps" that other people get, and are caused by 1,25-dihydroxyvitamin-D3.

Nothing else but control of this hormone will fix them. Nothing.

..Trevor..

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Karen (---.brsr6.xdsl.nauticom.net)
Date:   09-02-02 08:41

Trevor,
I realize that you want us to avoid supplementation until we get our "D" levels checked. I am just curious about your opinion regarding glucosamine and chondroitin supplementation. What are your thoughts regarding that supplement?

Karen

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-02-02 08:56

Never tried them. I can see no reason why they would do any fundamental good. Maybe they might make you feel better. Just make sure there is no vitamin D in them.

..Trevor..

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-02-02 08:57

Trevor,

Osteopathic medicine was in answer to what was seen as a failing health system over 100 years. Not all osteopathic physicians practice as Dr. Mercola. In fact, he has an article on his website chastising osteopaths who have left the fundamentals of their osteopathic training, which includes a healthy lifestyle. Some DOs practice basically the same as MDs, dispensing scripts for every complaint and not spending much time on patient education in anatomy, nutrition and lifestyle. Many osteopaths do not use manipulative therapies at all. Some will refer you to an osteopath who specializes in manipulative medicine.

The public demand for a more holistic approach to health care continues to grow. Some osteopathic physicians and MDs are re-alligning their practice to accommodate these patients. We do have some power to vote as consumers - with our healthcare dollars - on what type of care we want to see flourish. We have to have seek out doctors who live up to our expectations.

Belinda

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Cher (144.138.225.---)
Date:   09-02-02 11:26

G'day everyone,
I thought i'd put in my perspective about this. The reason being is that about 10 years ago after a 5 month battle with "viral" glandular fever (or Mono in The U.S) - (which i am sure nowwas in fact a Sarc episode) I saw a naturopath who put me on a large dose of Magnesium. I saw her for some time & was on it for approx 2 years. I can't remember exactly what the dose was but she felt my body was lacking bacly in magnesium. May be totally un related to all of the above but I just found the topic interesting since it had happened to me.
Cheers & stay positive
Cher

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-02-02 13:43

Cher,
I guess it means that there are unimaginative naturopaths just like there are unimaginative M.D.'s

Anyway, I was talking about D.O.'s (Osteopaths), not Naturopaths (Heck... this gets complicated...)

But I guess there is always a chance that ignorance of the disordered vitamin D metabolism in sarcoidosis might make any doctor conclude that low magnesium levels were the problem.

But at least only doctors searching for a solution would come to this conclusion... and they might therefore be more open to the vitamin D solution

Doctors would find info like this (when they went searching):

"A very low level of magnesium in the blood can cause your muscles to tremble. Low potassium levels can cause muscle weakness and heart problems." (Admin note: Does not apply to the muscle weakness of Sarc)
http://www.mercola.com/forms/mpt.htm

Rather than relying on supplementation of minerals such as magnesium, with the possibility of upsetting mineral ratios, relying on a diet with plenty of fruits and vegetables seems a better path to preventing osteoporosis"
http://www.mercola.com/2002/jul/24/bony_vegetables.htm

"A balanced diet with ample fruit and vegetables and adequate protein appears to be important to bone mineral density"
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11842948&dopt=Abstract

..Trevor.. (Thanks for the ideas and links, Belinda)

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Devon (---.balt.east.verizon.net)
Date:   01-22-04 18:10

I've just recently started to take a magnesium supplement 250mg. Should I continue or discontinue use? I have pulmonary Sarcoidosis, and it has effected my sinuses, skin, heart, eyes, and joints in my fingers at times. I also have edema in around my ankles, hands, and fingertips. I haven't been able to follow up on my 1,25 Vit-D levels with my doctor because I can't afford the additional tests needed such as blood work, stress test etc. I'm still waiting for pending decision from state medical assistance program.

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-23-04 16:34

Hi Devon,

Why is it that you started taking the Magnesium supplement?

Are you saying that your doctor will not do the D-metabolites tests unless you have other blood work and a stress test also?

Meg

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Devon (---.balt.east.verizon.net)
Date:   01-24-04 19:57

No, Meg I'm not saying that my doctor won't do the D-metabolites tests because of blood work, and stress test. It's because of my pending medical assistance status that I can't get the additional test done right now. I was taking the magnesium supplement to assist with bones and blood circulation.

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Pippit (---.asm.bellsouth.net)
Date:   01-24-04 20:38

Devon,

When you say medical assistance do you mean Medicaid? or is it through an employer or the Service? Are you having to pay all your medical costs out-of-pocket? If so, that must be rough. Do you know when you're likely to be approved? I'm on Medicare and Medicaid and I thought I was going to have a problem getting my insurance to cover the testing but it turned out to cover all of it. I had one doctor tell me it was too expensive to run but he had not been entirely honest with me about that. I later had my GP run the test easily. If you have any form of insurance right now it might be worth calling the insurance company directly to see for yourself if they'll cover it. If not, see if you can find out how much longer you'll have to wait for a medical assistance decision.

Let us know exactly what barriers you're running into and maybe we can help. Each state is alittle different but there are usually some strategies that will work to get things moving.

Keep us informed and let us know if there's anything we can do as you proceed.

Pippit

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-24-04 23:43

Hi Devon,

Magnesium is a popular supplement right now and I don't believe it is contraindicated for use by sarcoidosis patients at the recommended dosages-ask you doctor how much you should take. Blood tests are the best way to determine your true need and track the effectiveness of this important mineral. If you have bone loss, it may be due to high levels of 1,25-D. Reducing that is the most important way to assist your bones. Correct magnesium levels lower blood pressure. But high blood pressure in a sarcoidosis patient is most likely high 1,25-D.

I wish you luck with your application for medical assistance. While you are waiting, be sure to do what you can to minimize symptoms by avoiding all sources of vitamin D.

And let us know how you are doing.

Meg

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Devon (---.balt.east.verizon.net)
Date:   01-25-04 14:56

Thanks Pippit and Meg, and I'll follow-up with you both on my progress with medical assistance. My prelimary application and requested info was submitted the second week of this month, and I haven't been called in for an appointment yet. Yes, right now I have to pay all medical cost out of pocket, with exceptions to what's allowed from a research grant at Johns Hopkins Sarcoidosis Clinic with my present physician who is also my Chronic Pulmonary Care Specialist. By the way the MD State Dept of Health & Mental Hygiene oversees the Medical Assistance Program here in Baltimore. I'll keep my fingers crossed that they don't turn me down again. So, either way I'm still hopeful-- and of course I will be watching my diet closely for excessive D- Vitamins consumption. Thanks again.

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Pippit (---.asm.bellsouth.net)
Date:   01-25-04 20:21

Hi Devon,

Are you currently involved in a research project through the clinic you go to? Is it a medication clinical trial or something where they observe the disease?

Pippit

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Devon (---.balt.east.verizon.net)
Date:   01-31-04 11:54

I think its both Pippit, the grant is renewable on an annually basis. It's called the Baurenschmidt Patient Care Assistance Grant at Johns Hopkins Sarcoid Clinic.

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Anonymous (---.cg.shawcable.net)
Date:   04-01-04 14:47

The doctors are currently looking into a diagnosis of Sarcoid for me. I had a chest x-ray recently to show immense scaring of my lungs and nodules formed. I went in thinking I had asthma due to shortness of breath while I was exercising I do not have any other symptoms. 7 years ago it was determined that I have severe osteoporsis, I was 26 at diagnosis, they still have not determined the cause of the osteo but it is so severe that over a course of a few years I suffered from several spinal fractures resulting in the loss of approx 2 1/2 inches of height. I know that Sarcoid is treated with prednisone and I was hoping you could inform me as to some other types of drug that can be prescribed so I can do some research and be informed when I speak to my doctor in a week. He is in complete agreement, once finally diagnosed, I can not take prednisone it is far to dangerous for my bones. Also have you ever heard of any conditions that may link the Osteo and the scardosis. I have also been diagnosed is IBS at age 22. Thank you for any and all informaiton

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   04-01-04 18:17

Hannah,

Welcome to SarcInfo. Your history of Irritable Bowel Syndrome and osteoporsis make me very suspicious that you've had sarcoidosis for a long time. Sarcoidosis produces high levels of the hormone 1,25-D which causes bone loss. If you do a search of this site with the word 'osteoporosis', you will find many discussions.

It is vital that you have your D-metabolites tested and begin treatment with the Marshall Protocol before you lose any more bone mass. Please spend some time reading SarcInfo. Everything you need to know to put your sarciodosis into remssion without steroids is right here.

Meg

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Anonymous (---.cg.shawcable.net)
Date:   04-01-04 18:23

Thanks for the input Meg, I will start reading as much as I can. My bone specialist said years ago that it looked like I had osteo for a long time before I was diagnosed, and my new lung specialist is saying the same thing about the sarcoid. This specialist is looking at how to link the three things together to try and help me get some answers as to why all these diseases keep happening to me. Thank you for the information about my D-metobolites I have never had these checked and when the osteo was diagnosed no one thought to do a chest xray. I am really glad that I found this site!

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Admin (---.vnnyca.adelphia.net)
Date:   04-01-04 18:28

Hannah,
The specific paper which explains things for your Doc is at this link. It says:
"The two principal hormones of the calcium homeostatic system, namely PTH and l,25-dihydroxyvitamin D3 [1,25-(OH)2D3], are potent stimulators of osteoclast formation"

'Osteoclasts' is the mechanism by which bone is broken down. The paper explains this in detail. Have your 1,25-D measured, and Doc can stop worrying about where the bone loss came from

..Trevor..

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: J.B. (---.ia3.marketscore.com)
Date:   09-24-04 15:28

Can anything be done to help a person who has avascular necrosis of the humeral bone ( shoulder) from taking too much predinsone?

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Lottie (---.proxy.aol.com)
Date:   09-24-04 22:04

J.B.

As you already know, prednisone is only going to make you worse. If you already have avascular necrosis, you should not take ANY prednisone. There are no safe levels, especially for long term use.

I recently weaned off of Prednisone as I prepare to go on the full Marshall Protocol. The Benicar helped quite a bit with the pain aspect as I weaned from the Prednisone.

In my opinion, the best thing that you can do is to get on the Marshall Protocol as soon as you can.

Whatever you do, don't return to any immunosuppresants. They will only allow your disease to worsen.

*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: Bone Loss, Calcium, Magnesium and such...
Author: jessie (---.phil.east.verizon.net)
Date:   07-02-05 20:47

i have just sign on to this information net and l'am glad l did because l have had lot of the problems that everyone else has mention and l would like to know why my doctor keeps giving me water pills for my swollen ankles when now l have read that it does more harm then good so could please tell me if their is something that l could take for my ankles swollen and l can't wear my shoes because of this and l'am in a wheel chair and l thought that was why my ankles were swollen and l don't drink much fluids. and l would like to know why my skin is dark and bright on my legs like l have burn my self now l can't wear dresses and l love to wear them not now my legs look very bad and l'am a black women and l don't want to go around like this if l can do something about it. so please let me know. thank you

 
 Re: Bone Loss, Calcium, Magnesium and such...
Author: Lottie (---.proxy.aol.com)
Date:   07-02-05 22:03

Jessie,

Do you have a diagnosis of Sarcoidosis? If not, do you have a diagnosis of any other illness? such as Rheumatoid Arthritis, diabetes?

This website deals primarily with Sarcoidosis, but the Marshall Protocol treatment plan that the patients with Sarcoidosis use, can also help many other diseases.

If you could give us more information about your condition, perhaps we can help you.

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

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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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