LymeNet Flash: Sarcoidosis and Lyme disease- Anyone else??

This is topic Sarcoidosis and Lyme disease- Anyone else?? in forum Medical Questions at LymeNet Flash.

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Posted by merrygirl (Member # 12041) on :

Just got back from the doctor and he and my kidney doctor are thinking I have Sarcoidosis.

The treatment is immunosuppressants.

I haven't started anything for it yet but wondering if there is anyone out there who has both and treats both?

I know I have asked Q's about this before but I want to ask again.

I am going to have a node biopsy after christmas.

Any help appreciated!
Melissa

[confused]

Posted by Lymetoo (Member # 743) on :

OH my. You may need to check into the Marshall Protocol. Seems it would be far better than taking steroids and making the Lyme worse!!

Do they know why you have fevers?? Is that the reason why??

I'm really sorry to hear this!

Posted by robi (Member # 5547) on :

I had a biopsy on a lymh node. Yes it had the non-cseating granuloma. They thought sarc at first ......... it is not sarc it is Lyme ..... i remember the tick bite.

Bartonella can cause non-caseating granuloma. I was positive for bart.

Sarc is yet another garbage can DX. Its a group of symptoms.

Posted by CaliforniaLyme (Member # 7136) on :

A longtime member of our local group has sarcoidosis in her lungs and she is not doing EITHER the Marshall Protocol- because she had a bad reaction to that med- horrible reaction- to Benicar-
and she is not doing immunosuppressants either.

She is not treating it.
Sarcoid is associated with Lyme. With her I wonder if it is Bartonella because she has never been treated for that- the only TBD she wasn't treated for!!! So I wonder because of that-

Posted by bettyg (Member # 6147) on :

melissa,

sorry to read about your diagnosis. [group hug]

i know of 2 local women who have SARC; no lyme; don't think they were tested for it.

1 was in my fibro/cfs support group.

other was a co-worker who has lost 60-75% of her lung air capacity; needless to say she goes to MAYO CLINIC regularly..

best wishes to you.

mp board has a lot of info, but trevor marshall is the worst person i have ever dealt with in my life! worst temperament and telling off people left and right!

if you go there, their PRIVATE MESSAGES ARE READ BY HIM; EVERY ONE OF THEM!!!!

THEIR former moderators who quit let me know this. that's the board i started with.

so be careful if you go there; it's NOT FRIENDLY like this one is! strictly business.

they have a SEPARATE SARC BOARD TOO!

Posted by CaliforniaLyme (Member # 7136) on :

BettyG- I agree re Trevor M- he yelled on the phone at one of the most delightful members of our local group- and they delete bad experiences from their board so it is not as uniformly successful as they say it is-

Posted by treepatrol (Member # 4117) on :

Borrelia burgdorferi infection may be the cause of sarcoidosis.

Hua B, Li QD, Wang FM, Ai CX, Luo WC.

Naval General Hospital, Beijing.

Serum antibody to Borrelia burgdorferi was measured in 33 patients with sarcoidosis which was confirmed clinically and pathologically. The results showed that 81.8% of the patients were positive for anti-B. burgdorferi antibody. In addition, a strain of B. burgdorferi was isolated from a patient's blood. Fifteen patients received ceftriaxone 2g per day or penicillin 12 million U per day. The antibody titers of the patients decreased to nearly normal levels rapidly.

Serum angiotensin converting enzyme (SACE) turned to normal range after the treatment. According to the findings mentioned above, we consider that B. burgdorferi infection may be the cause of sarcoidosis and sarcoidosis might be a specific type of Lyme disease.

Link is in newbie Links

PubMed

Posted by merrygirl (Member # 12041) on :

Thanks everyone..

They said that could explain the fevers too.

Just more BS

That board does not sound very nice!

Think I might skip it!

I will keep you posted!

Thanks guys!
Melissa

Posted by Limping Lily (Member # 5099) on :

treepatrol, i agree with you about the sarcoidosis probably being caused by Bb!

Posted by Lymetoo (Member # 743) on :

Also...I have a granuloma in my lung. Me thinks it's Lyme!

Posted by Munch (Member # 11323) on :

I think sarcoid is related to Lyme too. They call it a "shifty" disease! Do any of the symptoms sound familiar?

According to a Nursing Spectrum article that a friend sent to me the symptoms are:

Sensitivity to light;
Redness of the eyes;
Dry cough/shortness of breath;
Swollen lymph nodes;
Chest pain;
Raised red skin rash;
Joint stiffness/pain.

Sarcoid info: Foundation for Sarcoidosis Research

http://www.stopsarcoidosis.org/

Last time I checked in with FSR they were writing about many having success with long term Abx. Many have the skin manifestation, erythema nodosum (on legs).

Here's a picture:
http://en.wikipedia.org/wiki/Erythema_nodosum

Does it look like any of the coinfection rashes?

Posted by sunnymalibu (Member # 9586) on :

I was diagnosed with sarcoidosis in 1992 by a Kveim test at Mt. Sinai Hospital in NYC. I was treated with prednisone for a long time. My main symptoms were uveitis, fatigue and I also had erythema nodosum. My eye doctors in N.Y. said they had never seen such vicious uveitis in any patient. I've since had 23 eye surgeries.

Recently had a positive Igenex test for Lyme and and being treated with abx.

Posted by bettyg (Member # 6147) on :

malibu,

so sorry to read of your 23 eye surgeriees! wow! are things any better now for you since all of them? I SURE HOPE SO! [group hug]