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 The material here provides useful background, but most of this site is now out-of-date.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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 Long suffering (Uveitis)
Author: Terri (---.sp.trw.com)
Date:   08-06-02 14:26

I have been suffering from Uveitis since January 2000, my Ophthalmolgist diagnosis me with Sarcoidosis solely based on my race and age I had several blood test done, MRI, chest x-ray and 3 spinal taps.........everything came back negative. Since discovering this awful thing call Uveitis; I have been on an emotional roller coaster, because of the use of steroid drop and numerous injection, I had to have cataract surgery in both eyes which lead to Csytoid Macula Edema which lead to having a Vitrectomy in both eyes. I have seen specialist after specialist, only to be very disappointed after every visit.

 
 Re: Long suffering (Uveitis)
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-06-02 18:42

Terri,
It sounds as though you are in doubt of the sarcodiosis diagnosis. Although there is some flexibility given to doctors in this, a diagnosis of sarc generally should not be given unless there are biopsied non-caseating granuloma. Sometime it is made on characteristic xray presentation, which would have been noted by the Radiologist.

What you describe is without timeline. How quickly did these eye conditions progress? If it is within a year, what antibiotics were you prescribed to guard against the possibility of an infection?

Have you obtained copies of your blood tests? Did your doctor do a serum ACE? (there is info about these tests elsewhere on this message board).

..Trevor..

 
 Re: Long suffering (Uveitis)
Author: Mona (---.lai-ca-1-67.rasserver.net)
Date:   08-06-02 19:39

Hi Terri,
I also have a terrible case of uveitis and have had cataract surgeries, glaucoma valves put in and out, injections and now have macular edema. I had one injection for the macular edema and it helped, but only for about one month. Where do you live? Mona

 
 Re: Long suffering (Uveitis)
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   08-07-02 07:26

Dear Trevor:
What is Uveitis exactly? I know the term means inflammation of the eye, but what are the symptoms?
I have itchy, at times sore, red eyes. I was told that I have cataracts developing in both eyes (due to long-term Prednisone use). One eye is almost always "bloodshot" looking.
Thanks....
Caroline McG.

 
 Re: Long suffering (Uveitis)
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-07-02 07:34

Mona,
I know how convinced you are that the constant opthalmologic treatment you have received is responsible for saving your vision, but there are very many of us out here that have not gone to eye doctors when we have had the floaters, vision blackouts, and other scary eye symptoms associated with sarc.

Uveitis is a SYNDROME, not a disease, and it describes a group of symptoms all associated with inflammation in the eye.

Personally, I believe that frequent intervention with steroid injections is at least partly responsible for later cataract formation. Additionally, the levels of Angiotensin and 1,25-dihydroxyvitamin D in the eye are also responsible for modulating the risk of cataracts (yes, the eye has a complete renin-angiotensin system within it, just like every other organ in your body)

We know that Cataracts and vascular degeneration are reduced by Angiotensin Blockade and we know that both ACE and Angiotensin are systemically high in Sarcodiosis. There is no reason why sarc's eyes should not also benefit from Angiotensin Blockade, its just that nobody has bothered to do the studies yet

Therefore I am not a supporter of immediate and chronic intervention by opthamologists, especially while the underlying systemic inflammation (the ACE, Angiotensin II, and 1,25-dihydroxyvitamin D) remains untreated. Cataracts are a known side-effect of systemic prednisone, are are certainly also caused by local steroid injections.

Opthalmologists are familiar with treating normal patients, they have no concept that Sarc patients bodies frequently behave differently to drugs and treatment methodologies.

That is why I am emphasising a systemic approach. I personally retain a 20:20 vision (with glasses), even though I have been Stage IV sarc for over a decade. I look after my whole body, and I believe emphatically that until the systemic cause of the inflammation has been removed there is no point in treating the results of that infection organ by organ. The eye might seem to be very different from, for example, a kidney, but it really isn't

I welcome everybody's comments.

..Trevor..

 
 Re: Long suffering (Uveitis)
Author: Terri (---.sp.trw.com)
Date:   08-07-02 08:29

Trevor,

Yes, I am in doubt that I have Sarcoidosis. During my last Vitrectomy surgery, the gel from th eye was removed and a biopsy was done on the fluid for Sarcoidosis of course the gel came back negative. Prior to my eye problem I had the flu and one week later my eyes became red, so I made an appointment with my Optometrist, he diagnosis with pink eye and was given antibiotic for one week when I returned after one week, my Optometrist notice that my iris was no longer an oval shape; he then referred me to an Optometrist. I was immediately put on 80mg oral steriod, steriod drops every hour and dilation drop twice a day for one weeks. When oral steroid failed to quite my eyes, I was put on Methotrexate, Cyclosporine and Immuran during the course of two in a half years; without any resolution.

 
 Re: Long suffering (Uveitis)
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-07-02 08:43

But no more antibiotics, Terri? A frequent cause of eye problems is infection, isn't it?

..Trevor..
(ps: in the link above 'spondyloarthropathy' is an arthritic inflammatory disorder)
(pps: I misread your response about 'pink eye', sorry)

 
 Re: Long suffering (Uveitis)
Author: Terri (---.sp.trw.com)
Date:   08-07-02 09:15

I have requested to my Opthalmolgist on several occasion to prescribe some type of antibiotics as a trial run, since the auto-immune suppression medication failed to work (he has elected not to). Do you know of any antibiotics that is used for Chronic Uveitis? Any input will be appreicated.

 
 Re: Long suffering (Uveitis)
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-07-02 09:20

Terri,
I have to apologize for not having noticed that you did, indeed, have a one week course with antibiotics for the 'pinkeye'.

Assessment of which Antibiotic to use is a complex task, and requires professional expertise that I don't have. I would like to help, but I can't (beyond giving you links to the literature, like the one in my last message).

..Trevor..

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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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