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 The material here provides useful background, but much of it is now out-of-date.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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 to retrigger sarc
Author: Mike (---.telia.com)
Date:   07-02-02 22:54

Hi
I have had sarc for 14 months now. Last 3 months I did not feel almost anything. I was happy. Now in two days I could feel some ancle pain coming and also like sore ribs. I have lived like I always do so WHY is it retriggered?

Its been raining 3 weeks here in sweden so its not sun exposure, though I catched alot of sun 4 weeks ago. I have stood on a concrete floor for 4 hours , rehearsing with my band. Maybe that can trigger the ancle pain??

Is this like it is??

Now I consider taking a two week cure of some mild antiflamatory
like Diklofenak.

Best Regards Mike
 
 Re: to retrigger sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-03-02 05:08

Mike,
Have you had blood tests run for 1,25 Dihydroxyvitamin D3 yet? Until you do that you can make no statements about sun sensitivity. Some sarc patients can accept no radiation at all, shady or direct. You need to monitor this hormone. The other marker, 25 hydroxyvitamin D, tells you how much is stored in the tissues. This can be stored for months, gradually building in concentration.

You asked "Is this like it is??"
No, many of us remember active sarcoidosis as writhing in a ball on the floor so full of pain from everywhere that you just wish to die. What you are experiencing is early stages...

You need to get control of this now, it is not just an annoyance. Get those blood tests done. Talk to your doc about a course of doxycycline or minocycline for a few days. Try and figure out what is happening before it starts to control your life.

..Trevor..
ps: You said you play in a band - your body might be reacting to an increasing concentration of sidestream smoke from the discos?
 
 Re: to retrigger sarc
Author: Mike (---.telia.com)
Date:   07-03-02 12:36

I will test the hormones.

You say early stages?? In some cases my stage one will fade away in a couple of years. will it not? In some cases it can go to stage two.
That is what doctors here in Sweden says. They call it a "good" sickness, not fatal.

Can it not be that I will have it back and forth in this level just?

It seems that my worst cases during 14 months is:

pain in ancles, some chest pain, mild fatigue, some vertigo sometimes.
Other wise I have lived and work normally. I have not taken any medication in 2 months. the last 2 was Ok months.

Lets pray they find a universal cure soooooon
 
 Re: to retrigger sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-03-02 12:48

Mike,
"doctors here in Sweden .. call it a "good" sickness, not fatal"
You have wise doctors, Mike. Here in the USA they throw prednisone at nearly every patient, a drug that is proving far more dangerous than the disease itself.

Yes, you should be able to keep the pain level at a low threshold, as long as you learn to understand the signals your body sends you, and also identify the causes of the flare-ups. The discovery of bacterial genesis by Swedish doctors was the biggest break-through in decades. So many 'unexplained' flare-ups can now be understood. I used to find that I needed a few antibiotics from time to time - people used to laugh at me - but not any more

Keep smiling, (and get those hormones checked...)

..Trevor..
 
 Re: to retrigger sarc
Author: Mike (---.telia.com)
Date:   07-03-02 12:54

Thanx trevor for you wisdom

Well my flare up is really killing me WHY?

I have some candidates.

1. sun
2. my new puppy scratched me with his dirty claws. ( I forgive him)
3. Standing with bad shoes on a concrete floor. (can make anyones ancles heart)
4. Started a small cure for hemoroids ( no fun) At the same day I got worse. Coincidence or what? It contains 2-hydroxi-5-chlor cymol and natril orleas, what this can be?? CAN I be oversensitive to this and trigger my sarc. I belive I have had this coincidence before but not sure.
5. Plain little sleep. the puppy is training

Please take your pick

 
 Re: to retrigger sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-03-02 13:05

Yes, any of the candidates could do it. Work through them one by one. Most will go away in a day or two, except the puppy scratch and the hemorrhoid medicine (BTW, constipation is a sign of Hypervitimanosis D).

Least likely are lack of sleep and standing on the concrete, unless this is the first time you have ever done that

You should add to the list a possible flare-up of an internal bacterial infection, which may have been dormant for a while...

..Trevor..
 
 Re: to retrigger sarc
Author: Mike (---.telia.com)
Date:   07-03-02 13:35

Ah I see

so Sun can be one factor, the funny thing is last summer was good here
and I felt good also.

I will monitor
scratches
hemoroid medecine
and internal infection to see a connection hopefully.

can food be a trigger??

thanx for this board btw. Hope we all get well

ps Now I will sit on our rehearsals

 
 Re: to retrigger sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-03-02 13:43

The food color Tartrazine (FD&C Yellow #5) (E102) affects the immune system, mine quite badly. Stay away from it. It's banned in Norway and Austria, but used a lot in the USA for green and yellow foods.

Amaranth has immune activity as well, but I haven't noticed any particular problems.

Happy rehearsal..
..Trevor..
 
 Re: to retrigger sarc
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   07-07-02 13:13

Dear Trevor:
Many times the drugs Minicycline and Doxycycline are mentioned for Sarcoidosis. I would say that they are antibiotics.....? Do you know what they are specifically used for? Is Tetracycline similar? I take that daily. Is one better or stronger than the other?
Lots of questions........thanks..
Caroline
 
 Re: to retrigger sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-07-02 13:23

Caroline,
Minocycline and Doxycycline are from the same Tetracyline family. There are subtle differences in the dosages, and some patients might respond better to one than another. They are supposed to be very similar antibiotics, but...

..Trevor..
 
 Re: to retrigger sarc
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   07-10-02 17:20

Dear Trevor:
Well good then that these drugs are similar at least to Tetracycline. As I said I was prescribed for Tetracycline and the dosage was increased this past year. The dermatologist prescribed the drug. I was not very faithful in taking this drug....you have to take it on an empty stomach...and so the time came and went. However, now that I have read your comments and others about how this group of drugs helps patients with Sarcoidosis..you can bet I will do better in taking it as prescribed!
I have a lot of medication to take daily and some of them are potent and some are not so great for the stomach.
How does this drug act on the Sarcoidosis? I should know but I don't want to "guess"....
Thanks....
Caroline Mc.
 
 Re: to retrigger sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-10-02 17:38

Caroline,
I am not one who is strong on giving patients lots of medication to take. I belive in just enough to do the job...

I frequently quote the paper "Short-course doxycycline treatment versus conventional tetracycline therapy for scrub typhus" as giving a good indication that for Rickettsia infections it certainly seems that a very short course of treatment, intermittently taken, will do the job.

These drugs act by trying to kill off bacteria that might be hiding in the soft tissue (including lung tissue) in your body. This bacteria is capable of triggering sarc inflammation, causing a relapse. They are effective against Propionbacterium Acnes as well as the infectious diseases, which is probably why your dermatologist prescribed it. Surprisingly, it appears likely that this Acne bacteria can also trigger sarc inflammation, but I doubt that your dermatologist knew that when he prescribed it

Would you mind sharing the list of drugs that you have been prescribed to take daily?

..Trevor..
 
 Re: to retrigger sarc
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   07-11-02 06:51

Dear Trevor:
I was advised to take first Vioxx 50 mg a day then down to 25 mg. daily (something about not staying on a high dose for a long period of time)
I take Prilosec mornings for the stomach. Atenolol and Hyzaar for fluid retention and blood pressure (although my blood pressure normally runs 138/88 except when I am in the doctor's office!)
Zoloft for depression.....
Allegra for allergies.....itchiness....and altho I had the scratch test and skin test done...no allergies were noted.
Valtrex...now for repeated Canker sores in the mouth...one or two bouts of Athlete's foot, skin rashes (dermatologist says one Valtrex daily would ensure that because my immune system has been "at war"....this would help.
I also take OsteoBiflex daily....strictly on my own...thinking it might help.
Tylenol #4 for pain.
ICHydroxyzine HCL 25 mg daily....for itch and rash
ICLevoxyl 150 mcg for low Thyroid
Premarin daily....menopausal symptoms
I am embarassed to say just how many I take daily...even tho they are prescribed.
Duragesic 50 mg. patch for 72 hours.
The doctors I have now all know of the drugs I listed......
 
 Re: to retrigger sarc
Author: Mike (---.vnnyca.adelphia.net)
Date:   07-11-02 15:47

Can it really be like this?

Last spring I was diagnosed Sarc stage ONE. In the fall(august) the granuloms in my lungs was smaller.

I FELT better during summer strangely enough.

November was OK. December came with dizziness and some pain. NO high levels of anything said the doctor.

This years has been sort of OK, until 14 days ago, when pain in the ankles started again. Now its at the same level as last spring. I take Diklofenak some antilflammatory medecin for 13 days now. I can take some more I guess.

WILL and MUST stage one go to stage TWO? Or can I have this set back and still be stage ONE? Can it also like for some vanish?

And what about the papaya rumour? I eat one each day last summer and fall, dont know if it REALLY did anything but it tasted good as a breakfast.

Be well all
 
 Acne bacteria to retrigger sarc?
Author: Craig Moore (---.vc.shawcable.net)
Date:   07-28-02 11:45

Hi Trevor:

I'm not sure I understand the acne connection with sarc. I have had cystic ance all of my adult life, since puberty. I was treated with Acutane when it first came out in the early 80's, before I appear to have contracted sarcoid around 1983.

The Acutane did it's job and I "recoverd" from the side effects as promised. I did not go on Acutane again as my dermatologist suggested year after year since I still was getting a moderate amount of cystic acne. I didn't feel the negative effects of a second round of Acutane was worth it at that point but I am sure glad I took the first round. Acne sucks.

By the way, I'm still waiting for my results back from the latest serum and urine tests. I asked for a test on my 1,25 dihydroxyvitamin D3 but not the 25 dihydroxyvitamin D3. I have several other things being checked ... all the regular stuff including WCB, ACE, etc.

Should I be making a connection with the acne? I took tetracycline for years as a teenager. Oh, by the way, the doctor that prescribed the tetracycline was, in retrospect, useless. Old school, had nothing to say about my sarcoid although we didn't know what it was at the time. And the dermatologist that put me on Acutane was also useless. He observed my skin sarc for years and would always say, "if you want me to check it out I will, it's up to you." We didn't know I had sarcoid at that point but a simple test would have confirmed. I better stop before my blood boils again.

thanks again for your comments,
Craig

 
 Re: to retrigger sarc
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-02 11:50

Carig,
You need both tests done. The 1,25 dihydroxyvitamin D and the 25 Hydroxyvitamin D. And they should be done at the same time. It is the ratio of the two values that seems to be important. Average 1,25 and low 25 are indicative of inflammation.

My advice is to get some serious antibiotic treatment. Show your doc this reference to give him/her some idea of how Minocycline can be made to do the trick:
http://www.rheumatic.org/protocol.htm

..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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