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-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 The material here provides useful background, but most of this site is now out-of-date.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 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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Vioxx Warning & alternative therapies

Author: Karen (---.brsr6.xdsl.nauticom.net)
Date: 10-02-02 07:52

Last winter I was prescribed Vioxx for joint pain. Shortly after I began taking the medication, I developed shortness of breath and heart rythym irregularities. The symptoms felt like an exacerbation of my stage three sarc and I began to have more tests.

The doctor wanted to up my pred from 20mg per day to alleviate my symptoms. I said "no" since my CAT scan and chest x-ray did not show signs of more granulomas. Despite the test results, my symptoms worsened and I began to fear that sarcoid was affecting my heart.

One night in February, I was rushed to the hospital with a severe pain in my abdomen. It felt like someone was taking tweezers and pulling a vein out of my stomach. I passed out in the bathroom. I worried about having a blood clot because of the symptoms over the past month, and my history of deep vein thrombophlebitis. After a lot of studies, they could not determine the cause of my pain.

The next morning, I happened to notice a warning on the prescription information of Vioxx. Shortness of breath and possible blood clots and sudden death are serious side affects of Vioxx and Celebrex (Cox2 inhibitors). I stopped taking the Vioxx immediately and that day felt an immediate improvement in my breathing and heart rythym. Since then, my doctors have indicated on my record: Allergy to Vioxx.

Since then, I have seen numerous warnings on the internet for both Vioxx and Celebrex.

Lesson learned? Don't always assume that all of your breathing problems are sarc related!! Allergies to medications and to the environment can also cause breathing difficulties. Don't allow your doctor to up your prednisone at the first symptom of breathing difficulties.

Please be careful of Vioxx and Celebrex!

Karen

Re: Vioxx

Author: Admin (---.vnnyca.adelphia.net)
Date: 10-02-02 08:04

Karen,
I will go further and say "Don't assume that any of your symptoms are related to your Sarcoid Inflammation".

Many of them are, of course, but many are also due to the drugs that patients have been given. For example, hip failure is absolutely due to prednisone treatment, and not to the sarcoid inflammation.

..Trevor..

natural remedies

Author: sara (---.51.219.151.dslextreme.com)
Date: 10-02-02 09:21

anyone had any luck with herbal supplements? homeopathic remedies? acupuncture and the like?

recently i've been taking beta glucan from yeast and mushrooms and feel better. the pain in my axilla lymph nodes has greatly lessened so I will continue. supposedly this stuff is a natural antibiotic and activates the macrophages to eat the nasty stuff in our cells. "they" say it will not hurt those with auto-immune disorders and can be taken in conjuntion with antibiotics (since i believe my sarc is not an auto immune disorder i am not as worried about stimulating my immune system) its hard to find really clear info on the stuff that's not put out by the supplement companies, but there seems to be alot of anecdotal evidence that it has helped decrease tumors, caused relief for those with lupus and fibromyalgia. the good stuff is pricey and you have to wade through a ton of hype to find out which companies do the extractions right. i am not on any other medications presently so i have to believe this stuff is making the difference. i've only been on it two weeks and will continue for three months (unless i feel worse) to see what happens.

Re: Natural Remdies

Author: Admin (---.vnnyca.adelphia.net)
Date: 10-02-02 09:52

Sara,
In most cases sarcodiosis does not need to be treated aggressively. Some people initially feel that prednisone is curing them, but soon find that it does nothing for most of the symptoms (or the underlying disease). Most patients can learn to cope with their dyspnea and symptoms for at least a few weeks, while tests can be done, Minocin administered, and a better diagnosis obtained.

Therefore, just the action of not taking the plethora of potent drugs that are typically given to Sarc patients will often make them feel better, and a change to a "Natural" product might be given credit for that action.

The biggest problem with the "Natural" products is that they are usually not "natural".
Just like Arsenic (another "Natural" product), they are manufactured into the forms that you buy them, and carry many of the dangers in common with manufactured pharmaceutical drugs.

A bigger problem is that there is no list of ingredients, nor is there any understanding of what the ingredients might do to your body as time goes by. Using the example of arsenic again, just because something is natural does not mean it is good for your body.

All of the "science" that I have seen to back up the claims made for the "natural" products is false. It preys on the limited knowledge of the general public, using long words and sounding very important. Yet the science is actually fiction, and the fantasy in the claims rival that of the best Science Fiction Fantasy authors. Talk about "eating the nasty stuff in your cells" is a good example. You have loads of "nasty stuff" in your cells, and some of it is needed for your body to function properly

With that being said, I personally found that electro-acupuncture was the only way to knock down my migraine pain through all those dim, dark, years when it was ruining my life. I used devices, similar to this one, that I had bought in Japan and Singapore, using two electrodes straddling the nape of the neck, and it worked real well. Pain killers did not work for me, this technology did. I have been unable to figure out why, but it seems to be related to endorphin release. It did relieve the pain, but did nothing for the underlying disease, of course.

It took Minocin to finally knock down the underlying disease. If I were you, I would go for this REAL antibiotic before I would try any fictional "pseudo-antibiotic".

..Trevor..

Re: Natural Remedies

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 10-02-02 12:17

Sara,

Since it took a long time for me to get physicians to listen to my complaints and finally diagnose sarcoidosis, I had plenty of time to seek other help. I have personally used acupuncture and food supplements to try to alleviate my symptoms. The problem is in finding a good advisor. It's not likely you will find anyone in a health food store that will understand sarcoidosis. It is best to consult a physician, chiropractor, or nutritionist - one who understands the biochemistry of sarcoidosis. Even professionals may not understand sarcoidosis unless they have read and understand a lot of the sarcoidosis research.

I took beta-glucan on the well-meaning advice of a certified nutritionist. I took it for several months, before and after my diagnosis. It did seem to stop my lymph nodes from throbbing. It did not change how my lungs looked on CT and it didn't put me into remission. (I refused to take prednisone.) I stayed about the same while I was taking beta-glucan. What did help my pain and breathing difficulty at that time was supplemental oxygen, craniosacral therapy and osteopathic manipulation.

I decided to stop taking beta-glucan after I read on my own and understood more about sarcoidosis. I decided I might be doing more harm than good. Beta-glucan activates macrophages to release pro-inflammatory cytokines. People who have sarcoidosis already have an abundance of activated macrophages and pro-inflammatory cytokines. I used the money I was spending on beta-glucan instead to get cranio-sacral therapy from an osteopathic physician. That certainly helped my pain and stiffness.

I used acupuncture for three years, and it provided excellent temporary relief from pain. That was before I finally had a diagnosis, and before I understood how sunlight and vitamin D cause sarcoidosis symptoms to flare. Acupuncture was a gift from heaven when I had "non-bacterial pneumonia" (which, coincidentally, arose at the end of a vacation and more sun) and pain pills didn't work on me.

What has finally helped me get free of pain was first, avoiding sunlight and now, taking low-dose alternate-day antibiotic Minocin as Dr. Mercola uses in treating arthritis. Minocin is the only prescription I am taking.

I hope this helps.
Belinda