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 The material here provides useful background, but most of this site is now out-of-date.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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 Jaw Pain, Bad Taste, Face Flushing
Author: Michael (---.surfport24.v21.co.uk)
Date:   08-09-02 13:47

Hi
All

I have had sarcoidosis since 1989 and have lived with it ever since. For some time now I have had the following and think it could be due to the sarcoidosis.

1: My jaw joints and glands on both sides of my mouth are painful most of the time.
2: On each side of the jaw, just below the ear the is a swollen mass of "glands" to help the pain I rub them and at that time I get a metal tast in my mouth.
3: This one worrys me, every few days, normally in the evening I feel the blood rush into my jaw then my face and I can feel my heart beating in my teeth, my whole face goes very red. After a few minutes in goes away!!!!

Anyone throw any light on this, I am not on Prednisone right now.

Regards
Michael

PS Nice forum.

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-09-02 16:18

Michael,

You are not the only one who has had these symptoms. Feeling throbbing jaws, your heart beating in your teeth, and a bad metallic taste in your mouth are strange symptoms, but other sarcoidosis patients certainly understand what you are talking about.

Now.. to shed some light on these symptoms.. you need to understand that sarcoidosis patients abnormally secrete hormone D, 1,25-dihydroxyvitamin D, the biologically active form of vitamin D, because of the granulomatous macrophages. The result is that many of us have too much of this hormone, active vitamin D, and we have the symptoms of hypervitaminosis D. Click and read medical article links 19 and 20 (at the bottom of this page) and the posts on this thread for more information.

There are two things you need to do:
Begin today a new routine of staying out of and covering up from the sun.
Get your blood levels of vitamin D (both of them) and ACE tested.

Take care,
Belinda

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Michael (---.surfport24.v21.co.uk)
Date:   08-12-02 17:43

Hi

Thanks for the info, I was on vitamin tablets and Vitamin D was in them!!!!
Once I had read your post and articles on this web site I stopped having them.

I find it hard to understand why no doctor has ever told me about vitamin D and Sarcoidosis and sunlight as well.

I just wonder how long it will need for my Vitamin D level to fall to a safe amount.

Do I need to wear sun glasses in bright sunlight and or even when the sunlight is not so bright.

Regards and thanks again Michael

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-12-02 18:07

Michael,
It may take a while for the 25-hydroxyvitamin-D which is stored in your body fat to be reduced. Get your 25-D and 1,25-D measurements both taken and we will be able to take a better guesstimate at the time scale it will take to get things back under control.

I wear sunglasses inside, but they are Zeiss prescription lenses, with continuously variable diopter - they are PERFECT! - (and very expensive)

In general, if your 1,25-D to 25-D RATIO measures at above 4.0 I would recommend wearing sunglasses inside in all but the darkest rooms. Choose lenses that are just light enough to read through. Outside you will need the darkest lenses you can find, with clip-ons as well. When I was most sensitive I had a special set of Clarlet lenses made with 95% attenuation and clipped an extra 50% polaroid clip-on over that. It gives the impression of driving in the late afternoon rather than in the midday California sun...

..Trevor..

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Michael (---.surfport24.v21.co.uk)
Date:   08-12-02 18:30

Hi
Trevor
Thanks I will now find out just how hard it is to get my GP to do the blood tests. My consultant at the hospital has a 3 month waiting list. Our NHS here in the UK may well provide "free" health care, but the big problem is can you access it in good time.

On another note have you a list, that could be called.
10 things you need to know about sarcoidosis.

or
10 things your doctor never told you about sarcoidosis.

or
10 things you need to do to survive sarcoidosis.

Regards Michael

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Tee (---.dsl.rcsntx.swbell.net)
Date:   01-29-04 12:12

I have ear and jaw pain. A growth called a ranula, in the base
of my mouth. I get facial swelling when I first eat in the mornings.
I also have sarcoidosis. My oral surgeon saids he can't make a
diagnosis because he doesn't see any symptoms.
Are these symptoms common with sarcoid?

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-29-04 14:47

Hi Tee,

Welcome to SarcInfo. How was your sarcoidosis diagnosed? Ear and jaw pain is fairly common in sarcoidosis patients. Facial swelling could be due to sarc involvement of the salivary glands, especially if it happens when you eat. The ranula is a cystic tumor on the underside of the tongue. It contains clear mucous fluid due to dilatation of ducts of salivary glands and to obstruction of those sublingual mucous glands. I would suspect that granulomatous inflammation could cause such an obstruction.

You need to ask your doctor to check your D-metabolite levels. This blood test is a good indication of systemic sarcoidosis inflammation. Your sarcoidosis needs to be treated effectively with avoidance of all forms of vitamin D, Benicar, minocycline and then various antibiotic combinations. This may alleviate the symptoms you mentioned.

Please spend some time reading the patient tutorials and physician papers at the top of the page, the links to articles at the bottom of the page and the topic messages (threads), especially those that are starred.

Let us know if you have any questions about the Marshall protocol to put your sarcoidosis into remission.

Meg

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Velma D.Bader (---.proxy.aol.com)
Date:   02-13-04 14:41

For no reason I can figure out I get flushing of my face that looks like it has been burned--and feels hot. I have had it about four years. I am 82 years old. I don't have it all of the time. Hope you might be able to give me a reaon for it.
Thanks

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-13-04 16:49

Hello Velma,

Welcome to SarcInfo. Facial flushing is one of the symptoms of hypervitaminosis-D that results because sarcoidosis causes an elevated hormone 1,25-D level. Have you been diagnosed with sarcoidosis? Please tell us a little more about your health.

Meg

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Agnes (---.range81-152.btcentralplus.com)
Date:   02-23-04 11:02

I understand what each of you are going through,I have had these symptoms for a long time with reacurrence of oral thrush and in fection in both glands.I have recentley been given a new drug that stimulates the glands it does help, its called salengen,also been diagnoised sjogens syndrome and causes dry eyes as well.hope this can be of good use. PSwhat the new deig does is to stimulate saliva it is strange at first its hard to get used to not having a dry mouth.

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-23-04 18:44

Hi Agnes,

Welcome to SarcInfo. Thank you for trying to help by sharing information about a new medication that increases the production of saliva. I'm glad it is making you feel a little better. But our goals here at Sarcinfo are much higher.

Everything you need to know to put your sarcoidosis into remission instead of simply treating a symptom, is on this website. Please read the patient tutorials and papers for physicians and let us know if you have any questions about this safe, new treatment that will help you recover your health.

Meg

PS. I'll email you info about navigating the website and the Marshall Protocol guideline.

 
 Thrush, hand and foot pain and sarcoidosis
Author: oz (---.ipt.aol.com)
Date:   08-02-07 20:17

Hello,

A nice forum. i was diagnosed with sarcoidosis in June, 2003. At that time I only had shortness of breath and occasionally cough as complaints. My doctor after a serious of blood tests decided to just monitor my condition for a year and then i was discharged.

However, in December, 2006 I developed pneumonia and it didn't go away
until early February, 2007 and I still have coughing and developed pain in hands and feet. I used over 230 antibiotics for other different medical conditions and the last one was septra. In the meantime, an allergy doctor diagnosed me with severe allergies and I started getting shots as of June, 2007.

On July 2, 2007, I discovered something creamy in my mouth and thought that it was due to 2 faulty crowns I had a year ago. My dentist pulled one of them out and decided to put porcelen crown on the other one. I also visited my primary care doctor. She did basic metabolistic, B12, CBC count and tyroid funtion tests and all turned out to be normal or good. She prescribed myselex for the thrush and added that it is normal in sarco patients.

Although I don't see any creamy white films in my mouth anymore, i still feel
my tongue is stuffy and white and I wonder is there any correlation between oral thrush and sarcoidosis or should I go back to dr and have her order more tests? Thank you.

 
 Re: Jaw Pain, Bad Taste, Face Flushing
Author: Lottie (---.proxy.aol.com)
Date:   08-07-07 08:47

Oz,

Welcome to SarcInfo. While there is a lot of information here, SarcInfo is now outdated.

You will need to repost your information on >> www.MarshallProtocol.com (MP.com) in the **General Discussion of the Marshall Protocol** forum

We are actively helping people with Th1 diseases get well with the MP on that site now.

Here is information on >>
How to Register and Use This Board

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

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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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Sarcoidosis


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