Re: attn: Ethel or Chris or anyone.

[Guest guest]

Skip, nothing definitive here, but maybe it will help. I hope you can get

better info from and Ethel about actual cases. Also, there is a chat

group at the Sarcoidois support site in the last section below, maybe you

could inquire there if anyone has ever had treatment with tetracyclines.

(Note, p.acnes mentioned in the second abstract below is the culprit in the

" A " in SAPHO, and there is a study on long-term doxy that had favorable

results. I have that one somewhere if you'd like to see it too, it was

reported in the Arthritis & Rheumatism journal.) HTH Liz G.

~~~~~~~~~

Pulmonary sarcoidosis: could mycoplasma-like organisms be a cause?

Sarcoidosis Vasc Diffuse Lung Dis 1996 Mar;13(1):38-42 (ISSN: 1124-0490)

LA; Edsall JR; Austin JH; Ellis K [Find other articles with these

Authors]

Department of Pathology, Columbia-Presbyterian Medical Center, New York,

N.Y. 10032, USA.

The etiology of sarcoidosis is unknown but an unusual bacterial agent is

possible. Mycoplasma-Like Organisms [MLO] are obligate intracellular cell

wall deficient bacteria with a distinctive ultrastructural appearance. MLO

are a common cause of various transmissible plant diseases. Despite over 25

years of effort MLO remain uncultivated. Molecular biologic studies indicate

MLO are only distantly related to extracellular cultivable mycoplasma.

Diagnosis of MLO diseases is based chiefly on detection of the organisms in

infected cells by electron microscopy. Recently MLO have been detected by

electron microscopy within leucocytes in sterile inflamed aqueous and

vitreous humor from patients with idiopathic chronic uveitis including

sarcoidosis uveitis. Preliminary molecular biologic studies suggest that

human MLO are quite closely related phylogenetically to plant MLO.

Inoculation of human uveitis MLO into mouse eyelids produced chronic uveitis

and lethal systemic granulomatous disease with MLO within leucocytes and

endothelial cells in the disease sites. The MLO induced animal pulmonary

disease resembled sarcoidosis. This report describes abnormal intracellular

bodies consistent with MLO within leucocytes and endothelial cells adjacent

to the granulomas in transbronchial biopsies from 9 corticosteroid untreated

sarcoidosis patients versus none in 4 control lungs.

~~~~~~~~

Quantitative PCR of mycobacterial and propionibacterial DNA in lymph nodes

of Japanese patients with sarcoidosis.

Lancet 1999 Jul 10;354(9173):120-3 (ISSN: 0140-6736)

Ishige I; Usui Y; Takemura T; Eishi Y [Find other articles with these

Authors]

Department of Pathology, Faculty of Medicine, Tokyo Medical and Dental

University, Japan.

BACKGROUND: The causes of sarcoidosis are not known. The DNA of

Mycobacterium tuberculosis has been detected in some sarcoid lesions. In

Japan, Propionibacterium acnes has been isolated from such lesions, but

whether this indigenous bacterium is related to the disease is unclear. We

used PCR to estimate the number of genomes of these bacteria in sarcoid

lesions, to identify any link between sarcoidosis and these two bacterial

species. METHODS: We examined formalin-fixed and paraffin-embedded sections

of biopsy and surgical samples from lymph nodes of 15 patients with

sarcoidosis, 15 patients with tuberculosis, and 15 patients with gastric

cancer (controls). Quantitative PCR was done to amplify segments of 16 S

ribosomal RNA of P. acnes and P. granulosum and of insertion sequence 6110

of M. tuberculosis. PCR products were identified and the quantities of the

products were estimated in terms of the fluorescence of oligonucleotide

reporter probes. The numbers of bacterial genomes in samples were estimated

from standard curves of serially diluted bacterial DNA. FINDINGS: Genomes of

M. tuberculosis were found in samples from all 15 patients with

tuberculosis, from three patients with sarcoidosis, and in one control

sample. Genomes of P. acnes were found in 12 of the 15 patients with

sarcoidosis, in two tuberculosis patients, and three controls. The

difference in the estimated number of P. acnes genomes between individuals

with and without sarcoidosis was similar to that in the number of M.

tuberculosis between people with and without tuberculosis. There were

5x10(5) P. acnes genomes in sarcoidosis and 3x10(6) M. tuberculosis genomes

in tuberculosis, respectively, on average per microg of total DNA. The three

patients with sarcoidosis but without P. acnes all had P. granulosum DNA in

their biopsy samples; the number of genomes of the bacterium was 5x10(5).

INTERPRETATION: These findings suggest that propionibacteria had resided or

proliferated ectopically in the sarcoid lesions, whether there was a

connection with the disease or not. Propionibacteria are a more likely cause

than mycobacteria of sarcoidosis.

~~~~~~~~~~`

from http://www.blueflamingo.net/sarcoid/index2.html

Physician Answers Frequently Asked Questions About Sarcoid

Q. What is the cause of sarcoidosis?

A. The cause of sarcoidosis is unknown. Many potential causative agents

have been explored over the last 100 or so years. Some of the more

interesting include tuberculosis, syphilis, mycobacteria other than

mycobacterium tuberculosis, pine pollen, viruses.

Q. Is there a cure for sarcoidosis?

A. Most cases of sarcoidosis go away spontaneously or after therapy. There

are medications to help control the inflammatory response of sarcoidosis.

There is no specific therapy that could be considered a cure.

Q. What are the symptoms of the disease? Is there any type of early

detection or prevention of the disease?

A. Symptoms are so varied and non-specific that to list them would be to

list all symptoms in a book of internal medicine. Early detection is not

really possible on the basis of symptoms. Many times detection is

serendipitous when investigating other diseases or non-specific symptoms

such as shortness of breath or chest discomfort.

Ed. Note: A patient should consult with his or her personal physician before

changing or considering any medical treatments or health related changes.

[Guest guest]

Dear Skip, I am so sorry you are herxing so terribly but like I tell

everyone, my first one after Sinnott was a trip to Hell and back and although

I have herxed since, and am doing so now, have not had one like it since.

As for as Janice goes, this is a disease unfamiliar to me but most likely,

our wonderful Ethel and will be able to help you. They just

seem to know everything. Geoff may also be of help to you.

I have to say I admire his knowledge greatly. Be kind to yourself

during these days and know I am thinking (((((HUG)))) of you. Love,

Den and Skip wrote:

There

is a lady in the painting class I joined, before my trip to Iowa to see

Dr. Sinnott.I have not been back to class since, as I am herxing big time

from the IV's. However, I received a call from the teacher of the

class to day, as this other lady in the class, Janice is her name, has

just been diagnosed with sarcoidosis, this being an autoimmune disease,

I am wondering if any of you know anything about this disease and if our

AP might work against it? She has been handed the deepest, darkest

kind of diagnosis and desperately needs some support. So anything

you can send this way would be helpful.Thank

you,Skip

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