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 The material here provides useful background, but most of this site is now out-of-date.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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 sarc and fungus?
Author: Luiggie (---.rasserver.net)
Date:   06-12-03 13:36

Hello everyone.
A few years back I had a fungal lnfection on my right thumb nail. I also have Sarcoidosis concentrated in my lungs and that's what I'm being treated for. Anyways, my doctor prescribed SPORANOX for the nail infection and right away I started feeling better as far as my breathing went. When the sporanox was stopped, the sob came back and I started feeling lousy again, so I asked for the sporanox again. Same results, my breathing and my whole quality of life just skyrocketed. Can it be possible that sarcoidosis has more to do with fungal inffections than given credit for? I mean, It would be worth looking into it. E-mail me, Im open to suggestions.
luiggie1@msn.com
 
 Re: sarc and fungus?
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-12-03 15:37

Luiggie,
A simple question, but a very complex answer, I fear.

I have done some quick research on the issue of fungus in Sarc (and other immune disease). Let me tell you what I found.

Firstly, there are several markers of the Th1 type of inflammation (which causes sarcoid granuloma to form). The easiest to measure is 1,25-dihydroxyvitamin-D. It is very specific to sarc (and other immune diseases caused by CWD bacteria). In the case of a viral infection it drops to almost zero, and in chronic sarcoid inflammation can drive it to 150pg/ml, or even beyond. Healthy folks average about 25-29 pg/ml.

Fungal infections cause a different type of response from the immune system - a Th2 response.

Fungal infections can also cause granuloma-like tissue formations in sarcoidosis patients

But I would not suspect that your primary sickness is driven by fungi, I would suspect some secondary process is affected by it.

In fact, at least one study showed that elevated levels of 1,25-D in tissue, just like sarcoidosis would be expected to cause, would actually have significant fungicidal properties.

It is not possible to be sure that you are not merely experiencing primary or secondary biochemical effects from Itraconazole. Particularly I would note that viral infections are known to be promoted by Itraconazole. If you had such a viral infection that was promoted from the background by Itraconazole, I would expect that it would suppress your 1,25-D level and that you would therefore feel much better.

My suggestion would be to get your 25-D and 1,25-D measured to give you a baseline for the activity of your immune system. That would then allow much more precise suggestions as to what might be happening and how any fungal infection might be making your disease worse (longterm) or better (longterm). Obviously it is making you feel better short-term, and that is almost always a good sign...

..Trevor..
ps: Itraconazole is a lot more toxic than either Minocycline or ARBs, and I would not suggest that you start taking it longterm until Doc can pin down its mechanism of action more closely...
 
 Re: sarc and fungus?
Author: Christian (---.ipt.aol.com)
Date:   06-12-03 15:54

Trevor,


What you said about viral infections driving 1,25 D to low levels is very interesting because everytime I cought the flu, I felt lousy but at the same time better, especially in regards to the neuro symptoms. The improvement would somehow disappear with the resolution of the flu. Am I alone like that?


Christian
 
 Re: sarc and fungus?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-12-03 17:25

Luiggie,

I noticed that this report indicates that another antifungal, ketoconazole, inhibits human steroid hormone synthesis, including 1,25-dihydroxyvitamin D synthesis. In fact, doctors at Yale University School of Medicine have used ketoconazole to control hypercalcemia in sarcoidosis. It didn't control the elevated ACE, however.

If there is a similar effect from the antifungal you used, that might explain why you felt better when on the antifungal.

Belinda
 
 Re: sarc and fungus?
Author: Sherri (---.chcgil2.dsl-verizon.net)
Date:   06-19-03 06:42

Hello Trevor,

Update: My husband was released from the hospital on 6-13 and seems to be doing well except for symptoms that I believe are from the Prednisone. Along with joint pain, he has excruciating pain in his ankle. One doctor said he has tendonitis. He is withdrawing from the Pred... down to 5 mg. per day. The pain and inflammation in his ankle just seem to get worse and worse. He refused an injection of cortisone which made me very glad.

Do you have any info re: what can be done to help. I am afraid that his achilles tendon may rupture or snap as some of my research on sarc or pred. indicate. It is so bad that he only gets up to go to the bathroom and has to use crutches (which is difficult because of his muscle and fat loss and general weakness).

I just read the info on this thread. I have not yet pushed for the second D level test yet. I will try to address that at his next doctor's appointment. I had a look at Joe's complete blood work up... I DO NOT know how to read this info, but when I looked at the fungal tests they were all negative. Am I correct in understanding that this is not a true indicator in Histoplasmosis? I understand that it is very difficult to diagnose and that antigens may be the main indicator? Where would antigens be found in this blood report?

Help... I'm so confused as to what is going on. Could you give me a clear path to take to find out if Histoplasmosis is the source of the problem or Sarcoidosis. I believe the first step is re-checking the vit D. Right?

We are struggling just to deal with what is causing the biggest problem and right now that is the ankle pain. I can't do anything to help.

Sherri

P.S. No baby yet, but doc says I am dilated 3-4 so he should be here soon!
 
 Re: sarc and fungus?
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 06:54

Sherri,
I have no idea why the Docs diagnosed histo. Only they could tell you. It was probably a wild guess on their parts, only they could tell you.

Ciproflaxin and other flouroquinolone antibiotics can also cause achilles tendon damage. These are used a lot in hospitals. I have never had this problem, you will need to insist that your Doc press the hospital Docs to see what they recommend, I am afraid.

..Trevor..
 
 Re: sarc and fungus?
Author: Sherri (---.chcgil2.dsl-verizon.net)
Date:   06-19-03 07:01

P.S.

Would ARB therapy help... sarc or no sarc?

Sherri
 
 Re: sarc and fungus?
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-19-03 07:15

Sherri,
ARB (and antibiotic) therapy have to be part of a coherent plan of action. It starts with measuring the D metabolites and ACE. Unfortunately, the first set of D data you gave me do not confirm the presence of active sarcoidosis, but, as I said before, you need to get the 1,25-D re-run, as the hospital ER probably did not handle the blood correctly.

If I accept the D data you sent me, there are a lot of questions that I cannot answer as to your husband's status. I couldn't responsibly give you any advice other than what I have given you, which is to get a repeat set of D metabolite data done. Doc is the only one licensed to make decisions for your husband. If he will not run the bloodwork then I cannot do more than advise why I think it is a good idea.

I wish our medical system had not degraded to the point it has. I was lucky, as 25 years ago, when I was last in hospital, I had good, thinking Docs who did not rely on whizzbang technology and wonder-drugs, but who used their brains. We all need to understand how today's system works, and how to work within it. Some of us have good, caring Docs. They are out there. It is often less hassle to go looking for a good caring Doc than to try and form a viable working relationship with the one you might have been given. I recommend you start by phoning internists with an MD and a PhD, and try to find one who will talk with you. Honest communication is always a good sign of a caring Doc...

..Trevor..
 
 Re: sarc and fungus?
Author: Jan Lewis (---.lgeenergy.com)
Date:   06-19-03 08:38

Sherri, I only respond to your note above because of my sister's experience with "severe ankle pain". She was on prednisone for many, many years (possible 20?) for Guillem Barre disease. She fell into a 5% category of people who do not get over it but go into occasional remission. (I often wonder now if this is also caused by CWD bacteria). Her ankle pain became severe to the point where she had to use crutches, and could barely get around. She ended up seeing an orthopedic specialist who put her first in a walking cast when he could not totally determine what was causing the pain. After that came off, she was again in excrutiating pain. She ended up having surgery to put a pin in her ankle. I'm not sure the drs. even knew what they were trying to correct to be quite frank. However, that seemed to help her for many, many years, but recently, she has been having pain from the pin itself so is back to drs. in the upcoming weeks to see what must be done. At one time they told her that the bones in her body were so thin from the pred that she could break one just walking down the street.

Jan Lewis
 
 Re: sarc and fungus?
Author: John Tavares (---.proxy.aol.com)
Date:   08-17-03 14:05

Trevor,

The issue of fungal infections and sarc has me confused. I definitly have a Th1 response and I do get a herx response from 50mgs of mino. I get some help from 40mgs of Benicar every 6 hrs, but it seems to take forever for the herx to die down.

I have fought fungal infections for as long as I can remember. ( toenail, athlete's foot, and tinea versicolor ) I was on oral Lamisil for about 2 years about 5 yrs ago. Fungal symptoms seemed to go away. They all returned within 2 months of stopping Lamisil. I now keep them at bay (but not gone) with Lamisil cream and spray.

My question: Does this, in any way, bear on the antibiotic treatment, account for my trouble shedding herx symptoms, or need additional treatment? Or do these fungal infections not have any bearing on sarcoid symptoms or treatment?

Thanks,
John T.
 
 Re: sarc and fungus?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-17-03 14:28

John,
The interplay of Th1 and Th2 is very complex, and few physicians understand it. I am no expert, either.

Herx usually takes 48 to 72 hours to clear my system, especially at the higher doses. That is for the actual antibiotic concentrations to decay to threshold. Then, if your Benicar blockade fails you will also have to wait for the 1,25-D which was generated to clear your system. Another 3 days or so.

I used to apply Tinactin cream under my crotch for all my adult life to stop the skin getting raw and red and inflamed. All that fixed up about 2 months into antibiotic therapy. I assume that the immune system, relieved from having to deal with the CWD, then attacks the fungus. But that is merely a guess. Recently, I have had no trouble at all.

So I wouldn't seek any extra treatment unless I felt it was necessary. Internal fungus is the only problem, very few folks have to deal with that.

..Trevor..
ps: MTX treatment does reportedly exacerbate internal fungal polyp growths (and lymphoma too).
 
 Re: sarc and fungus?
Author: John Tavares (---.proxy.aol.com)
Date:   08-18-03 13:09

Thanks Trevor,

I have been able to up my mino dose to 50mg M/W/F, so I have hope of getting it up to 100mg at the beginning of Sept. I had the impression from some of the thing I read that the Fungal problems could somehow interfear with the Mino or Benicar working as well as they should. Glad to hear that is not the case.

John T.
 
 Re: sarc and fungus?
Author: bernie (---.morenet.net.nz)
Date:   08-19-03 20:52

Antibiotics, which kill normal bowel commensals, have long been recognised as favouring an
overgrowth of fungi,.
What are your thoughts please on the ingestion of probiotics on the days when the Minocycline is not taken. Would yogurt be indicated on these days [ I understand it does not have Vit D ] or would the Calcium content be a contraindication. ?
I'll be grateful for your thoughts.
 
 Re: sarc and fungus?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-19-03 20:55

Bernie
Yoghurt and/or cheese rarely have Vit D added, and are excellent sources of dietary calcium. You should look to get 100% of the RDA of Calcium from a variety of foods.

..Trevor..
 
 Re: sarc and fungus?
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   08-20-03 06:43

Bernie,

You can take probiotics (friendly bacteria) in a variety of forms as often as you'd like. Taking them on the minocycline off days theoretically has fewer of them being killed off by the antibiotic so you aren't wasting your money.

Meg
PS. If you use the search feature of SarcInfo, you'll find more info on the different kinds of probiotics.
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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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