Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

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 The material here provides useful background, but much of it is now out-of-date.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 1^st 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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Pravastatin/Pravachol and sarcoidosis

Author: KaitlynK (---.proxy.aol.com)
Date: 05-22-02 18:57

I'm very happy to have found this site. An Internet friend mailed me the link about the ticks. I'm convinced this was the cause of my sarcoidosis although I've no proof, of course. I am an American who traveled for a month in Europe in the fall of 1998. In March of 1999 I was prescribed a statin drug (provachol) for cholesterol lowering. I took one 20 mg. tablet in the evening upon retiring. I awoke 8 hours later in the throes of what I now know was Lofgren's syndrome. I took one tablet each night for the next 2 nights with a total of 3 tablets. For the next 6 months I suffered from terrible myositis (pain used to cause me to scream out loud), swollen legs, erethyma nodosum, terrible fatigue, joint pain etc. No health care provider recognized sarcoidosis in it's acute form. At the end of that 6 month period I quit on the doctors. I had no idea what was wrong with me and was sick of searching for help in my rural area where there aren't a lot of doctors who can think out of the box. In the next 6 months, those symptoms resolved but I had terrible headaches, constipation, vision problems. I didn't know I had my calcium metabolism screwed up by the granulomas in my lungs (which I didn't know existed). in March of 2000 I was admitted to hospital almost dead with a calcium level of 17+. Since then I have been on prednisone almost entirely in one dose of another ranging from 2.5 up to 4o. I am presently on 2.5 alternated daily with zero and seem to be asymtomatic. I would love a comment on the pravachol. I'm POSITIVE it brought out a sleeping organism in me that I picked up from a tick while in Europe. What do you think?

Re: Tick bite/statin drug and sarcoidosis

Author: dee L. (---.dialup.chcgil.ameritech.net)
Date: 05-23-02 21:04

I was dx'd with Sarc last May after a 5 month battle with several doctors... I've been on Pravachol for at least 3 years and have not had any symptoms as you describe. I know about a tick bite I had in the mid 1980's that caused all kinds of strange rashes for several weeks, went dormant, then, in the mid 90's I broke out in petechial hemorrages for 2 months, all tests taken during those times of exacerbation were negative, and then, 2001 the Sarc diagnosis. Are they related???

Does anyone know if the Rickettsia Hel.. bearing ticks are isolated in European countries or are they known to be world-wide?.... The tick bite causing my unexplainable rash came from Upper Michigan.

Dee L.

Re: Pravastatin/Pravachol/Ticks and sarcoidosis

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 05-23-02 21:27

Rita,
Yours is a hard post to answer. I know the most probable answer, but I have none of the details that your doctor(s) would have had when they anlyzed your history and prescribed your treatment.

Firstly, a known side-effect of Pravachol is that it has been reported to cause a "Lupus erythematous-like syndrome". If you click on that link you will be looking at a copy of the FDA approved "prescribing information" that is distributed with the drug. A number of other hypersensitivity reactions are also reported there, but Lupus has such a close resemblance to sarc, and particularly to Lofgren's, that it stands out quite clearly. At the top of the page there are a number of blue tabs, and more information about the drug can be obtained by clicking the various blue folder tabs.

Pubmed has a report of a severe case of Lupus apparently caused by Pravastatin (Pravachol) in Japan.

Another case report from Medline is of a sarcoidosis patient who developed severe clinical Myotonia apparently caused by Pravastatin.

Clearly these side effects do not happen very often. neverthless, I believe it would be a very good idea if you were to ask your doctor about them, and what action should be taken in your case.

I would add that should your doctor(s) not feel that an adverse drug reaction can be ruled out, a case report can be made to the FDA by your doctor(s), so that others are more quickly diagnosed and treated. A form for doing this can be found on the Internet by clicking this link.

Keep smiling,
Trevor

Re: Pravastatin/Pravachol/Ticks and sarcoidosis

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 05-23-02 22:06

Dee, although Rickettsia fragments have now been found in granuloma of sarcoidosis patients, so have a number of other bacteria, including Mycobacteria Tuberculii.

The significance of the discovery in Sweden, in my opinion, is that several diverse types of bacterial DNA have now been shown to produce a granulatomous reaction in people with a pre-disposition to sarcoid.

I don't think that the particular genus of Rickettsia is terribly important (for reasons I have detailed elsewhere on this message board). I believe that we will find many different types of bacterial challenge, to add to the known pulmonary challenges, as the years go by, and our knowledge of bacterial DNA becomes more thorough.

..Trevor..

Re: Pravastatin/Pravachol/Ticks and sarcoidosis

Author: KaitlynK (---.proxy.aol.com)
Date: 05-26-02 19:08

Dear Trevor:

You mentioned in the last reply in this thread that the DNA of several bacterium, including tuberculosis, have been found in the granulomas of sarcoidosis patients. I found that very interesting as I do a LOT of reading about my disease. I'm no rocket scientist but would consider myself about a seven on a scale of ten for understanding my disease. However, I NEVER have been able to pin down good scientific information about sarcoidosis patients and how they react to tests for TB although I have read many ambiguous or actually contradictory "reports" about it. Can you comment on my experience?

I was diagnosed with acute sarcoidosis in 2000 after having had undiagnosed and untreated extreme symptoms apparently brought on by pravachol usage (1 tablet started the entire thing). I am now almost off prednisone and seem to be asymptomatic although I need to have my calcium metabolism signals checked by a lab soon. My question is this:

In 1971, prior to beginning employment in a school, I had a required chest x-ray and a skin test for tuberculosis. My chest x-ray was clear. My skin test, done with some kind of metal "thingee" with little prongs on it, caused a reaction in that my skin becamse reddened and raised. They were concerned but could find no evidence of active tuberculosis and so they let me work. The nurse kept checking it periodically and, if I remember correctly, the redness and bumps remained for at least 6 to 9 months. Finally, the school doctor stated that I was probably allergic to the metal in the tester "thingee." I didn't understand any of this. Now I am wondering if there is a connection to my later developing sarcoidosis. Can you derive anything from this description? Again, thanks so much for your help.