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 The material here provides useful background, but much of it is now out-of-date.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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 Really great info here!
Author: Becky (---.tampabay.rr.com)
Date:   03-10-02 11:07

Just wanted to say how helpful this site has been...have learned a lot and really enjoy having a place to go where there is no limitations as to discussions/content, etc...we're all in this together...being able to express our opinions, talk about personal experience regarding our own lives dealing with sarcoidosis, and offer support is truly wonderful...this is a very good thing!
 
 Re: Really great info here!
Author: Debbie (---.rasserver.net)
Date:   04-28-02 18:02

I second the motion. I am really thrilled to have found this site today.
 
 Re: Really great info here!
Author: Lynn M. (---.philadelphia-18-19rs.pa.dial-access.att.net)
Date:   04-28-02 20:54

Thanks for the information. I'm learning something new everyday. Many people as well as doctors need to be more informed about sarcoidosis. There are still alot out there who can't even spell it.
 
 Re: Really great info here!
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-16-02 13:18

I am so glad to have found this site....thanks to Ken. I have to try and copy some of the info. about bone and sarcoidosis.....my internist wants to see it. Doctors don't like the idea of finding information on the net. ?
Caroline
 
 Re: Really great info here!
Author: Debbie (---.64-79-83.bignet.net)
Date:   05-16-02 14:50

I agree completely. Trevor, where do you get your information. Can you give us some of your background. I am just amazed at all of your knowledge. Are you an MD or just a sarcoid sufferer with a genuine interest in helping others. You cerainly have to have some type of background with all your knowledge. Thanks again for being such a help to us!

Debbie
 
 Re: Really great info here!
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-16-02 15:01

Debbie,
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 Blockade.

It's sure a lot easier to do research nowadays, compared to the '80s. Back then you had to scrounge around libraries to find what everybody else was doing. The Internet has made so much information freely available.

...Trevor...
 
 Re: Really great info here!
Author: Debbie (---.64-79-83.bignet.net)
Date:   05-16-02 16:21

Thanks Trevor! I really do appreciate your site. The information is great and appreciated. You're absolutely right about research being much easier now a days. I did my graduate and post graduate work in the 70's and 80's. It sure would have been a bit easier now.

Are we able to access your two papers? I think the one about insulin would be interesting (if I can understand it) since both my brother and mother are diabetics.

Regardless, thanks again for all of your hard work.

Debbbie
 
 Re: Really great info here!
Author: Cher (144.138.225.---)
Date:   05-18-02 07:40

Here Here,
This is the best way to share our feelings, frustrations, symptoms & general knowledge we all have picked up along the way. I too have found that Dr's tell me to stop getting info off the internet but this site & my other Sarc friends I found on the net have saved my sanity more often than any Dr ever did. I am absolutely thrilled that Trevor set up this site & helps us all with his knowledge & skill without patronising us or making us feel like we are imagining things.
Thanks again Trevor, I for one have a small percentage of my sanity left because of u.
Cheers ... Cher

 
 Re: Really great info here!
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-18-02 08:44

Cher,
I am sorry that you have to deal with doctors who would tell you to stay away from the Internet. I am happy to discuss any of the material on this website at any time. That is the role of a scientist. If any doctor has any specific questions or doubts about any of the material on this website, just email me with their phone/FAX numbers and I will call/write them.
(Even if they live in Australia )

..Trevor..
 
 Re: Really great info here!
Author: Cher (144.138.225.---)
Date:   05-19-02 07:00

Cheers Trevor,
Fortunately the last new Dr I went to read your credentials & was happy with the support & info that u offer. The next time I recieve a negative response in regards to this I will take u up on your offer & pass on their info so u can set them straight.
As usual ... Cheers Trevor.
Cher
 
 Re: Really great info here!
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-19-02 07:49

Cher,
I don't think the phrase "set them straight" is exactly how I would put it

But I certainly would be happy to make available the latest relevant research papers in the field, and any other material of which I am aware.

Keep Smiling,
..Trevor..
 
 Re: Really great info here!
Author: Monica Laginskie (---.sympatico.ca)
Date:   06-02-05 11:13



Trevor thank you for all your information on this site.. I find it wonderful... It is also wonderful to hear other people feel the way I do and get frustrated with the medical field in general. I for one needed to find this site.. It has cheered me up.. now the task of finding a physician who does know something about sarcoidosis in Ontario Canada..Keep up the good work..
 
 Re: Really great info here!
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   06-03-05 10:19

Monica,

You'll find additional essential information about Th1 inflammation and implementing the Marshall Protocol at our 'sister' site:

Marshall Protocol.com

Best,

Meg
 
 Re: Really great info here!
Author: Ruth Case (159.238.44.---)
Date:   06-30-05 08:41

I just want to say thank you for the information available on this site. It is unmatched as to helpfulness and understanding of all of the symptoms associated with this disease. I find it amazing that doctors don't have time to access this site and read how sarcodosis affects so many lives.

I was given so little information with my diagnosis. I didn't know how to proceed. I was sent licorice root by a friend and that was my only help in the disease. I did develop a respiratory infection and was prescribed doxycline. After 10 days my chest started to clear more and I coughed up mucus from my lungs for days and then clear stringy stuff after that for weeks. I knew then I felt better. I had no idea of the monster I was going to be dealing with and even now this site adds is so helpful. NOIR glasses are a must have for sarcodosis. No doctor I have ever been to realizes that. I have had symptoms with my eyes since I was a child. With exposure to sunlight I developed pain behind my eyeball and floaters and flashes. Still no one recommended that I limit my exposure to light. It was your website that explained the connection. I'm having my labs next week. And my doctor I am sure will connect with your website for physcians. He is almost there but has had issues with alternative therapies.
 
 Re: Really great info here!
Author: Admin (---.ventca.adelphia.net)
Date:   06-30-05 08:48

Ruth,

Alternative therapies? None of that around here. This is all 'mainstream medicine', albeit revolutionary knowledge.

..Trevor..
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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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