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 The material here provides useful background, but most of this site is now out-of-date.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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 Cancer treatments help?
Author: JC Miller (---.hsd1.tn.comcast.net)
Date:   08-03-06 08:45

I know a woman who is currently under going a trial test at Vanderbilt hospital using a cancer drug, name unknown and has improved greatly. I was wondering if anyone else has heard of this? Sarcoidosis has spread all over my body and nothing seems to be working and I will not do prednisone ever again and I can’t take Minocycline or Doxycycline so I’m kind of lost to where to go now.

 
 Re: Cancer treatments help?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-03-06 09:34

JC,

First-line cancer drugs usually work because they are cytotoxic, killing cells and stopping cell growth. Other cancer drugs may be used to attempt to relieve symptoms or side effects from treatment.

Medicine uses a 'risk versus benefit' approach to evaluate whether any potential benefit from a drug is worth the known risk of side effects use of that drug. This is analogous to the trade-off of the cost of buying something versus the value of an item. In medicine, though, the risk/cost is in terms of how patient health is adversely affected.

The people at Cochrane Collaboration just published a report called Immunosuppressive and cytotoxic therapy for pulmonary sarcoidosis. They looked at trials comparing methotrexate, chloroquine, cyclosporin A and pentoxifylline. Their conclusion was:

"Sarcoidosis is a condition that can affect most of the organs in the body, including the lungs, heart, brain, bones, liver and skin. Patients who have severe disease or those who do not respond to treatment with steroids are often given powerful agents that suppress the immune system in an attempt to control the disease. However, these drugs have severe side effects. There is no evidence at the moment that the benefits of these drugs outweigh their side effects."

The NHLBI information about sarcoidosis cautions:

"Most of these other drugs [beyond prednisone, a corticosteroid] are immune system suppressants. This means that they prevent your immune system from fighting things like bacteria and viruses. As a result, you may have a greater chance of getting infections.
Most of these drugs also can cause serious side effects. Some also could increase your chances of getting cancer, especially if you take them at high doses."


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

 
 Re: Cancer treatments help?
Author: JC Miller (---.hsd1.tn.comcast.net)
Date:   09-22-06 10:09

Belinda thank you for your answer, I have a hard time walking my hip is shot from prednisone and I have skin sarcoidosis on my feet and it about kills me to walk, right now my doctors are doing nothing to help me they want me to see my sarcoidosis doctor but I owe him money and he won't see me till I pay him and there are not many around. I know I have it in my lungs, liver, skin and lymp nolds spelled wrong maybe even more places the pain is great but I fight it and as I said before i will never take prednisone I learned that the hard way and if anyone is new here never use it please. I have always got help from you it was my doctor who gave me this website. I watch my diet and follow what I can but I can't seem to build up my lungs I guess now I am venting, thank you again for the answers.

Blessings,
JC

 
 Re: Cancer treatments help?
Author: Lottie (---.proxy.aol.com)
Date:   09-22-06 21:51

JC,

You’ve said that you can’t take Minocycline. Are you still absolutely sure that you haven’t had a HERXHEIMER REACTION in the past?

I am allergic to many antibiotics, and thought that I might have developed an allergy to one of the antibiotics on the MP. I’m taking it now, and only have the reactions on a regular basis as herx. I can understand why someone would believe that it was an allergic reaction, especially if they took a large dose of Minocycline and had a major herxheimer reaction. But in the small amounts that we start with, and Benicar to help with the inflammation, a person will notice that the reaction corresponds to when they take the Minocycline, and it goes away until the next dose it taken.

Have you considered trying a therapeutic probe?

What is a therapeutic probe?

Remember that our expertise involves helping people understand how their symptoms are related to Th1 inflammation (Sarcoidosis is only one of the diseases that are being treated with the MP) and how to resolve that inflammation with the Marshall Protocol.

I strongly urge you to read more about the herxheimer reaction, and consider the MP as the way to get well.

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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