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 The material here provides useful background, but much of it is now out-of-date.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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 slow steady decline in PFTs
Author: tom (---.client.attbi.com)
Date:   06-09-02 08:30

37 yrs old. First identified fibrosis in the lungs 2 years ago from cough problems. Had 7 pft's over two years (and other tests) diag w/sarcoidosis (not verified with biopsy). Cough got real bad 6 months ago, now finishing 4 month prednisone therapy and cough is gone, but PFT's still showing continued decline. 2 years ago FEV1 was 110% of expected, now 88%. FEF25-75 down from 82 to 51. Doc says my pfts are mostly within norms, but I should expect mild shortness of breath. *** I have read that a decline in FEF25-75 can be early warning sign for active disease. I believe I have endobroncial involvement with my sarcoidosis, creating obstruction on PFT. I think I read somewhere that progression of endobroncial involvement doesnt show up well chest xray, only ct. Comments?

 
 Re: decline in PFTs holding for 3.5 years
Author: Anurag Agarwal (---.clmntn01.nj.comcast.net)
Date:   11-25-03 19:13

I am 60 year old person of Indian origin. I lived for first 27 years
of my life in India. During my stay in India iI had several attacks
of esonophilia, the most severe ones were at the age of 17 and 25.
My uncle had TB and father had Pleuracy around 1948. My father is
still living well at the age of 85. I spent considerable time in
San Jose area from 1992- 1997 staying in hotel with lot of pine
trees.

Around 1992 I began to feel breating discomfort and the chest
>>X-Rays revealed faint markings indicating subtle infiltrate. I had
>>PFT done in 1992 as a requirement befor I could be hired by GE. The
>>test results indicated they were in 95% range( FEV1, FVC,and TLC).
>>The symptoms of wheezing coughing would occur frequently though I
>>went to the doctor when it became unbearble.This went on till 1996
>>and reached to a point where I could not undergo the physical
>>strain of my job and was advised by my doctor to rest. I felt lot
>>better and the time passed.
>>
>>In April 2000, I had acquired pneumonia and persistent markings on
>>the X-ray had me refrred to a pulmonogist and the disease
>>sarcoidosis was diagnosed based on biopsy in August of 2000( age
>>56.5 years).
>>
>>I have developed labile blood pressure as well. I do remeber the
>>fluctuation in my blood pressure even in 1990. It was once
>>recoreded at 190/108 but was under control in few hours. The doctor
>>at the nuclear plant site said it was due to over exhaustion.
>>
>>My PFT since April 2000 have stabilized in the range of 50% +/- 10%.
>>from 1992 Values. DLCO is around 40% and the chest CT scans show
>>stable condition. The pulmonary specialist has presented an option
>>for treatment but in light of stable condition he is agreeable with
>>my decision of not taking any medication except the BP control
>>medication. I also have a fear of TB bacteria in dormant stage
>>which might flare up. Though the biopsy done in June 2000 ruked out TB and fungus.

>>I am interested in finding out as to when the onset of Sarcoidosis
>>might have occured. Could it be in early child hood, or in 1990's
>>or in April 2000. I read in literature that stage II and Stage III
>>patients with stable infiltrate could experince severe dysfunction
>>and in cases of Pulmonary sarcoidosis the interval between onset
>>and severe disability was 108 months. I am in stage II since April
>>2000 that we know. But I feel that since the stability is exhibited
>>from the time the medical survellence was instituted, it might have
>>stabilised much earlier may be in 1996/997.
>>
>>I have been over weight all my life around 190 lb, height 5'-4.5".
>>At the crest of my obisity my weight was 212 lb on September 21,
>>1996, My total proteins have trended up since 1992 with gloublin
>>level moving up and albumin level trending down.
>>
>>I have all medical test results plotted on graphs which I can fax
>>if you direct so.
>>
>>In essence since I experienced extreeme physical limitations since
>>1996, an onset estimate and your opinion regarding the level of
>>dysfunction would put me at rest as I would know if the level will
>>be the same as it has been since 1996 or further degradation is to
>>come in future.
>>
>>Once again I thank you for reviewing my case
>>
>>
>>Anurag Agarwal
>>

>
I started with cough problem in 1992

 
 Re: decline in PFTs holding for 3.5 years
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-25-03 20:58

Anurag,
Welcome to SarcInfo.
There are tutorials at the top of this page. One of them gives your answer to "how long have you had this disease" - you have had it all your life, and it has been gradually trending worse as your bacterial load has increased.

Anyway, you are in the correct place now to figure out what to do and set the wheels in motion. After you have read the Tutiorials try and work through some of he "Papers for physicians", you seem to have a pretty good grasp of medical terminology.

Again, welcome to SarcInfo.

..Trevor..

 
 treatment to esonophilia
Author: Preeth Chutke (61.1.179.---)
Date:   03-10-04 21:30

Dear Sir, most recently I had taken my Complete blood picture , the report is normal except for increase of esonophil count it was 7% and the normal range was in between 0 to 5 %. Kindly suggest me what to do. Because of this i am having wheezing problem and i am allergic to parthenium grass. And this trigers a asthamatic attack in me and i use salbutamol inhaler frequently. Kindly help me come out of this esonophilia problem.
I shall be grateful to you all my life .Waiting in anitcipation.
regards,
Preeth Chutke
pchutke@y..

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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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Sarcoidosis


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