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 The material here provides useful background, but most of this site is now out-of-date.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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 back and leg discomfort
Author: Barbara (---.proxy.aol.com)
Date:   09-11-02 09:53

My back and legs have been affected by the prednisone I am on 40mg aday for a little less than three months, can I take an advil or motrin, etc. to relieve the discomfort? Being I am on prednisone my blood sugar went sky high and I don't know what is safe to take. Thanks
 
 Re: back and leg discomfort
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-11-02 10:03

Barbara,
If you have any joint or limb discomfort due to Prednisone you need to talk to your doctor immediately about stopping the cause of the problem, the prednisone. Else you will end up with very sick bones indeed.

Read this thread (click on the bold text here) for more info about the terrible bone problems that high doses of prednisone, similar to what you are on, can cause.

At the bottom of the page are links to studies which question the effectiveness of Prednisone as a treatment for sarcoidosis. Try and work through them, as well.

If Doc won't work through it with you, get one that will. Your future quality of life depends on it...

..Trevor..
 
 Re: back and leg discomfort
Author: caroline (---.win.org)
Date:   09-11-02 10:23

Hello Barbara,
Great advice from Trevor! I wish this column was around in 1996 and I knew what I do now about prednisone. I not only was a slim 120 lbs. I now weigh 185! Of a much greater importance, I have osteoporosis. Last year when my bone scan showed osteopenia I was very diligent to take my calcium, HRT and was prescribed Actonel (similar to Fosamax) I even tried weight strenghtening. Exactly one year later I find none of these preventative or corrective measures worked. Well, maybe I would have been worse.

Every major joint aches. The pain sometimes wakes me up during a sound sleep. My hand knuckles creak, my back hurts, I can pop my right hip out of place. My knees kill me. Lastly being vain, I went from a size 10 to 16. I sure don't ask my husband the dreaded question of "honey, does this make my butt look big?"

Read everything here about prednisone and you will at minimum make educated and informed decisions regarding your health care.
Best of luck to you! Caroline
 
 Re: back and leg discomfort
Author: JC Miller (---.nash01.tn.comcast.net)
Date:   09-11-02 18:09

Why do doctors only want to use Prednisone? It seems to cause more problems in the long run. So far every doctor I have talked to ask if I am on Prednisone. There have got to be more options.
 
 Re: back and leg discomfort
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-11-02 19:33

JC,
I think there are several diifferent reasons that Doctors prescribe Prednisone, Methotrexate, and Thalidomide, when they see a Sarc patient.

The first type of Doctor I will class as an "idealist".
Firstly, remember that the incidence of Sarcoidosis is 50 per 100 000, so if a Doctor sees 1000 patients in his/her lifetime then he/she has a 1 in 2 chance of ever seeing a Sarc patient. When you walk through the door then this Doc's lottery ticket has struck gold! At last he/she will get a chance to try out those "Wonder Drugs" and use them in some special, more intelligent, way so that he/she will show the world how this "mystery disease" should really be treated...

The second type is the "know-it-all". "I've heard about this disease from my associates". "It goes away on its own". "All you need to do is take a little prednisone to help that process along". "They tell me its the best way, and between them they have 'fixed' dozens of cases just like yours! Every time we have a pow-wow they describe how they have just cured another Sarc patient". "Don't worry - I know just what you need..."

Thirdly there are the 'wimps'. "Oh no- an incurable disease". I better do exactly what the book says so that the patient can't sue me for malpractice..."

The last type I will class as the 'Idiot'.
They look up the "big book" ('The Merck Manual of Diagnosis and Therapy')(Merck is a drug company) and see that Prednisone is the best way to help a Sarcoid patient. When it doesn't work at 15 mg they increase the dosage to 30mg, then 60mg, waiting for it to 'work'. If they think they can see some little change on XRAY or in serum ACE they declare SUCCESS! The patient meanwhile is suffering incredibly - but never mind the patient - this doctor is happy knowing he/she has done the right thing.

I have met all 4 of these types over the years..
But there are thoughtful, daring, clever, doctors. You just have to sort through a lot of the chaff...

..Trevor..
 
 Re: back and leg discomfort
Author: Dorothy S (---.rogers.nf.net)
Date:   09-11-02 19:38

Hi JC

Doctors precribe Prednisone because that's all they know. It's up to us to educate them. I just started with a new doctor who seems to be open minded. I gave her the information on the Vitamin D, she read the information and then sent me for the tests I needed. I am waiting on the results.

When I go back to see her I'll be giving her the information on Remission on Sarcodisis and I will INSIST that she start me on this treatment. If she don't I'll be looking for a doctor who will.

These are the options I am going to use. I will never go on prednisone.

http://clinmed.netprints.org/cgi/content/full/2002080004

http://www.sarcinfo.com/whatisit.htm
 
 Re: back and leg discomfort
Author: Louisa (---.bchsia.telus.net)
Date:   02-25-05 22:52

Does anyone have any ideas or info about sarc and calcified bones? Info on Vit d etc would be appreciated.. Thanks! Louisa
 
 Re: back and leg discomfort
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   02-26-05 07:11

Hi Louisa,

Welcome to SarcInfo. I'm not sure what you mean by calcified bones. Have you been diagnosed with osteopenia or osteoporosis? Do you take prednisone?

Sarcoidosis patients have a dysregulated Vitamin D metabolism because of the bacterial infection that our immune systems cannot handle. This allows the Vitamin D that is a hormone to rise too high and cause calcium to be depleted from the bones.

Dr. Marshall has said, "It is important that the patient's level of the active Vitamin D Steroid Hormone, 1,25-dihydroxyvitamin-D is kept between about 15 pg/ml amd 39 pg/ml. Values significantly above that will cause bone resorption, and values above 39 pg/ml are typical for patients with the Th1 diseases. Values below that indicate an immune system which is showing a bias towards the Th2 immune response."

He wrote a paper recently in "Autoimmunity Reviews" explaining this in more detail. You can find the abstract online here.

and a preprint version of the fulltext is online here.

Calcium is regulated by the Parathyroid hormone. Although 1,25-D modulates PTH, it also modulates many other hormones and body systems. See Vitamin D and Sarcoidosis.

and also this hormonal chart.

The Marshall Protocol will reduce the level of 1,25-dihydroxyvitamin-D and allow the immune system to kill the bacteria so you can resolve your sarcoidosis inflammation.

Let us know if you have any questions about recovering from sarcoidosis with 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: back and leg discomfort
Author: Cher from Chicago (---.cna.com)
Date:   03-02-05 12:42

Hello everyone, I'm new to this so bare with me. I was diagnosed w/ sarcoidosis June of 2004 (my birthday weekend), after my health took a nose dive for the worse (Bells Palsy, rapid weight loss, trouble breathing, you name it it had!!) My better half (James) surfed the web desperate for info on Sarcoidosis and someone that could help me. Well needless to say here I am! Since Nov 04 I make it a daly ritual to pull the site up for any and everthing new. I want to say you guys are great!!! Right now I am on Methothrexate 40mg once a week--weaned off Prednizone (Nov. of 2004)which by the way made me feel great at first to really horrible, now I'm ok. I guess? For now thank you everone and "I'll Be Back!!!".........

Cher from Chicago
 
 Re: back and leg discomfort
Author: Lottie (---.proxy.aol.com)
Date:   03-02-05 19:29

Cher,

Welcome to SarcInfo.

Congratulations on getting off of Prednisone! I know how hard that is from personal experience.

However, remember that the Methotrexate also has immunosuppressive properties, and suppressing the immune system only allows the bacteria that cause Sarcoidosis to continue to flourish and do well, causing damage to your body along the way.

Are you considering starting the Marshall Protocol? Since you’re in Chicago, have you considered coming to the conference March 12th, and 13th? I believe that Trevor is still taking registrations. The link is at the top of each SarcInfo web page.

Remember, that you can start by avoiding vitamin D in all foods and supplements. That includes but is not limited to eggs, fish, fish oil, and fortified dairy products. You also need to avoid sun and bright lights. Wearing NoIR sunglasses inside and out will also.

Check your inbox for more information.

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: back and leg discomfort
Author: sHIRLEY SKENJANA (163.195.192.---)
Date:   04-26-05 07:33

I have a problem I have been on this treatment for 2 full months and my legs are swollen. What can I do?
 
 Re: back and leg discomfort
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   04-26-05 14:20

Hi Shirley,

Welcome to MP.com. Please tell us a little about your diagnoses, symptoms, D-metabolites results, Vitamin D avoidance, exposure to sun/lights, NoIR sunglasses, dose of Benicar, dose of minocycline and Herxing symptoms.

With this information, we will be better able to answer your question.

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
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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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