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 The material here provides useful background, but much of it is now out-of-date.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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 Struggling for a decent diagnosis
Author: J.B. (---.ka.centurytel.net)
Date:   05-02-02 10:26

I am new to this site, and have found the topics to be extremely helpful & informative.

I was diagnosed w/sarcoids several years ago. Did the nasty predn. treatment & have faired fairly well since.

2 questions:

1. I have been experiencing lower back problems in the last 10 months. Doing the physical therapy thing and doing a trial run w/a chiropractor. So far, diagnosis is an inflammation problem in the hip area with nerve irritation . Is this common to sarcoid sufferer's? Still struggling to get a decent diagnosis on the source & reason for the pain/inflammation.
Any input would be helpful.

2. Since I am new to this site, was wondering the background on the "Admin" here. You seem to be a wealth of information.....besides being a sarcoid patient, do you have a medical background, or ?

Thanks for your help & keep up the good work!!!!
 
 Re: Struggling for a decent diagnosis
Author: Debbie (---.dialip.mich.net)
Date:   05-02-02 14:22

I was diagnosed with carpal tunnel right after my sarcoid. I asked my rheumatologist if he thought the two were related and he definitely thought there was a connection since the sarcoid causes the inflammation.
 
 Re: Struggling for a decent diagnosis
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-02-02 19:07

J.B.,
I have been on and off in endocrinology research since the early '80s. I have a PhD in the mathematical modeling of Insulin-Glucose homeostasis in Diabetic and Normal individuals. One of my Insulin papers is in Medline. I also researched the treament of Cryptorchidism with pulsatile LHRH infusions and also the treatment of infertility with pulsatile GnRH. One of those papers got into Medline, too. Spent most of the 90's in computers (including a PET scanner computer), and have come back to sarc research over the past few years, concentrating on the anti-inflammatory actions of Angiotensin Receptor Blockers when administered in a pulsatile manner

..Trevor..
 
 Re: Struggling for a decent diagnosis
Author: elaine emmi (---.client.attbi.com)
Date:   05-02-02 20:53

Hello J.B.

I'm a long-haul sarcoidian. And I've had trouble with my lower back for a long time (L5); which seems to be a typical sarcoid hot spot. And I too have just been doing PT as my lower back and hip have been bothering me a lot lately. I would advocate PT and chiropractors over steriods anytime!

And I've had carpel tunnel problems for many years. Have had permanent muscle damage in one hand and had surgery on the other. I get a lot of pain in my hands still, even had to give up piano.

Stress seems to play an important factor here as well has not staying in any one position for too long. I try to do stretching exercises to keep pain at bay and I take anti-inflamatories.

Good luck finding what works best for you,
Elaine
 
 Re: Struggling for a decent diagnosis
Author: Denise (---.connect.com.au)
Date:   05-03-02 00:06

I have been waking with a pain in my back for two years or so. It has only been since the sarc was diagnosed. Sometimes I am lucky to wake up without pain. If I lie in bed the pain gets worse.

I wondered about the sarc - but I also wondered wether it was due to using two or more pillows, aging or weight gain. It could also be a mixture of those.

It is difficult to prove which one of the dashed things is the cause. I am soon going on a diet and if I lose weight and the pain goes then it was down to the weight gain. However, if I lose weight and still have the pain then the sarc or aging comes up. To my knowledge I have never injured my back in any way and always lift any weighted object using my knees. I have never had an incident with the back.

Den
 
 Re: Struggling for a decent diagnosis
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-29-02 16:27

Dear Trevor:
I read the article (actually all of them) from John Hopkins Vasculitis Center...and came upon my diagnosis.
Let me explain. I was on Prednisone, once for 8 months, then off for 4 and back on for 6 months duration. I developed a few avuncular fractures along the way and then a pain in my hip so severe I could hardly stand up.
I saw my internist, who referred me to a bone specialist. I had x-rays, MRI's, CAT scan etc. and no one knew what was causing it. To make a long story short there it was: Avascular Necrosis of the bone. Word for word it described my symptoms.
I am a R.N. with a Master's degree and I do know a little bit about the body...and so I showed my internist this article and talked to her about the hip pain. I had had Physical Therapy two rounds also. Her reply was that patients with Necrosis can't stand up or on the leg or walk and have severe pain. YES! I did too....did she forget? I had been in agony for months and in fact couldn't sit down for periods longer than 1/2 hour.
Talk about frustration......The condition hasn't gotten better....I have gotten use to it...walk with a cane and limp. I do take Tylenol #4 prn.
Several doctors did not mention this to me....they simply said they didn't know what was wrong with my hip.
I wonder if I should send this article to them?
Caroline Mc.
 
 Re: Struggling for a decent diagnosis
Author: Beve (---.dsl.sndg02.pacbell.net)
Date:   06-04-02 21:45

I am struggling with the same kind of pain, I did the P/T, chiropractor, have taken 800mg of Motrin, now I am on Celebrex. after doing all of this my doctors cannot diagnosis the problem. the medicine takes care of the pain but it's is not taking care of the problem. I know it's inflammation due to the burning sensation, but my doctor does not agree.


Beve
 
 Re: Struggling for a decent diagnosis
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-15-02 17:49

Caroline,

If you need another article, here is one http://www.niams.nih.gov/hi/topics/avascular_necrosis/index.htm from the National Institutes of Health. There is information on symptoms, diagnosis and treatment of avascular necrosis.

I hope this helps, and I'm truly sorry you are having so much trouble.

Please hang in there. Find a doctor who is willing to help you in a way that feels right to you. We all know how difficult this is, but you obviously need some help.

Belinda
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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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