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 The material here provides useful background, but much of it is now out-of-date.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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 Abdominal Pain and Difficult Swallowing in Sarcoidosis
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-17-02 15:28

Trevor,

I've been thinking about that agonizing abdominal pain I had after sunlight exposure. It went away, of course. In the past, no reason has been found for my complaints of abdominal pain, although imaging and sonograms have been done. My doctors probably thought I was a hypochondriac patient!

My questions are:

If the upper abdominal pain can be due to sarcoidosis, is it a result of the sunlight/vitamin D reaction and granuloma/vitamin D production?

Is this another "chemistry thing" that might not be seen on diagnostic imaging?

If upper abdominal pain is related to sarcoidosis, would doctors be likely to recognize it? I am asking this because I just read this article http://www.cdc.gov/niosh/face200031.html and it sounds like abdominal pain may not be mentioned much in discussions of sarcoidosis.

Thank you,
Belinda

 
 Re: Abdominal Pain and Difficult Swallowing in Sarcoidosis
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-17-02 16:25

Belinda,
Abdominal and throat pain in sarc is not very well studied. Most probably because it is generally not regarded as a serious symptom.

There was one reported case from Poland, a patient who complained of abdominal pain and constipation, and who was subsequently diagnosed with sarcoidosis.

I am going to distinguish the abdominal pain based on whether it is associated with a tendency towards constipation or diarrhea.

It is often not comfortable for patients to talk about such things, but sarc patients seem to produce stool of larger diameter, which are firmer and harder than those of the 'normal' population. Often this is accompanied by classic constipation, but not always.

On the other hand, the existence of diarrhea with abdominal pain can indicate damage to the gastrointestinal tract, such as sarcoidosis attacking the local tissues directly. If anyone is experiencing abdominal pain with diarrhea they should see their doctor immediatley.

What I have found is that sarc patients frequently seem to have a cluster of the following symptoms, in approximately this order:

1: Incorrect digestive activity from the gastrointestinal tract
2: Abdominal pain and swelling
3: Inability to swallow properly
4: General peristalitic dysfunction in the intestines
5: Excessive stool size and hardness (one to three days later)

Of these symptoms only the constipation is recognized as a sign of Hypervitimanosis D, yet it is my observation that all these symptoms can be brought on by exposure of the sarc patient to sunlight. In the absence of inflammatory challenge, they can sometimes be put into remission by isolating the patient.

I find that the time frame over which such symptoms occur is typically 3 days rather than the several months for which Hypervitimanosis D is believed to persist in a 'normal' patient. It has been suggested that the difference in time course is because 1,25(OH)2D3 (which is another way of writing 1,25 dihydroxyvitamin D3) is responsible for the symptoms.

The incorrect digestive activity often makes it hard for the body to absorb medicines that you have taken orally. Once this cycle starts it is hard to stop or alleviate it by swallowing pills. They just sit in the stomach and produce irritation, rather than do their job. You can dissolve some drugs (eg Tylenol) in water and then swallow them, but sometimes even that is not effective.

The abdominal swelling often causes about 1-2 inches increase in girth, enough to make clothing become very uncomfortable.

The inability to swallow causes tablets to become 'stuck' in the trachea, unwilling to move down to your stomach (where they end up not-dissolving anyway ). The throat muscles become tight and painful.

Once the body has 'returned to normal', which generally seems to take about 3 days, the stool again become soft and easily passed. the abdominal pain goes, and normal salivary action is apparent in the throat and mouth.

Most sarc patients never get full control of these symptoms, if control is measured by a soft stool. 1,25 dihydroxyvitamin D3 is secreted directly by the macrophages in the sarcoid granuloma, as well as coming from food and sunlight. You have to have control of both sources in order to get control of these problems.

What I want to emphasize is that these symptoms are reversible, and they can be avoided, albeit with difficulty at this point in time.

..Trevor..

(C)Copyright 2002 SarcInfo.com All Rights Reserved.
Proper attribution must be made in any derivative works. Email Trevor for details

 
 Re: Abdominal Pain and Difficult Swallowing in Sarcoidosis
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-17-02 16:40

Trevor,

Thank you for your explanation. It is difficult to talk about these things, but your explanation makes a lot of sense.

I have not seen a better explanation for why I sometimes
have difficulty swallowing
choke simply drinking water
have abdominal pain
do not digest pills and food
have constipation

It seems logical that these are a result of sarcoidosis. I know I had all these symptoms after my sun exposure.

Do you know if anyone has considered this as possibly the reason for the weight loss that sarcoidosis patients often have prior to their diagnosis?


Belinda

 
 Re: Abdominal Pain and Difficult Swallowing in Sarcoidosis
Author: Caroline (---.win.org)
Date:   05-18-02 10:48

Would that also include a sore throat that adds to the difficulty in swallowing? Not a week goes by that I don't have a sore throat. Incidently the sore throats are more prevalent evenings and nights.

I sometimes choke while swallowing just liquids then cough myself silly.

Caroline

 
 Re: Abdominal Pain and Difficult Swallowing in Sarcoidosis
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-18-02 11:16

Caroline,
It seems to take about 4-6 hours after the end of an exposure for the symptoms to reach their initial peak (they then peak again about 24 hours later). That would correspond with your evening and nightime timeframe. The lack of correct peristalsis means that both liquids and solids fail to move smoothly through the gastrointestinal tract.

..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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