posted
Is there anyone reading this who has been diagnosed with sarcoidosis before finding out it was Lymes or anything in relation? I would like to hear your story...
Posts: 3 | From Minnesota | Registered: Jul 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Seroprevalence of anti-Borrelia antibodies among patients with confirmed sarcoidosis in a region of Japan where Lyme borreliosis is endemic.
Ishihara M, Ohno S, Ono H, Isogai E, Kimura K, Isogai H, Aoki K, Ishida T, Suzuki K, Kotake S, Hiraga Y.
Department of Ophthalmology, Yokohama City University School of Medicine, Japan.
BACKGROUND: Sarcoidosis is a multisystemic granulomatous disease of unknown etiology, while Lyme borreliosis is a multisystemic disorder caused by Borrelia burgdorferi. The purpose of this study is to evaluate the relationship between sarcoidosis and Lyme borreliosis in a region of Japan where Lyme borreliosis is endemic. METHODS: We determined the seroprevalence of anti-Borrelia burgdorferi antibodies as well as antibodies three Japanese Borrelia strains by enzyme-linked immunosorbent assay and dotblot assay using purified Borrelia-specific proteins in 46 patients with confirmed sarcoidosis and 150 controls (50 disease controls and 100 healthy controls) in Hokkaido, the affected region. RESULTS: Fifteen patients with sarcoidosis (32.6%) tested positive for Borrelia spirochete in both assays, compared with two disease controls (4.0%) and two healthy controls (2.0%). The seroprevalence of anti-Borrelia antibodies in patients with sarcoidosis was much higher in the affected region than in the region in our previous study were Lyme borreliosis is non-endemic. CONCLUSION: In a region where Lyme borreliosis is endemic, Borrelia infection may be partially associated with sarcoidosis. ________________________________
Other studies seem to discount a relationship, but their methods seem mighty questionable (i.e., using an ELISA to "rule out" lyme -- yeah, right.)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Itsy_bitsyone
Unregistered
posted
That was the first (other than stress, etc) misdiagnosis I had. Actually, I had three docs SURE it was Sarc at different times.
Luckily, because my ACE levels and CRP were not indicative of Sarc, the pulminologist refused to do the broncioscopy. Therefore, I was never treated. Had I been treated, I would have been dead right now!
Ironically, my pulminary fibrosis is actually chicken pox scars (I had pox very badly at age 24), but having that show up on chest x-rays ALMOST got me treated with long term steriods. With the neuro symptoms, the scars, the lymph nodes, the other lyme symptoms...
Whats funny was that for the longest time I cussed that pulminologist for telling the GP that I was fine. However, had he not refused to treat me for Sarc, I would be dead. So, I went through another 7 years of being told I was nuts since the puminologist snafu. At least I am still here. Sometimes Ducks actually do something good...not on purpose of course...ha ha
posted
My diagnosis is sarcoidosis based on a positive Kveim test done at Mt. Sinai Hospital in 1992. Two doctors argued over my results one saying the test was positive, the other said the cells were too large. They agreed to call it sarcoid.
(Kveim test: A skin test for detecting sarcoidosis, a disease of unknown origin that causes inflammation of body tissues, especially the lungs and skin.
The Kveim test involves injecting a preparation derived from sarcoid tissue into the skin. A lump developing at the point of injection is a positive result. The test is named for Morten A. Kveim, a 20th-century Norwegian physician).
I've had so many medical problems over the years that I dont' believe that sarcoidosis would cause all of them. I have had 22 eye surgeries because of uveitis and glaucoma. I am currently blind in one eye from this.
I just had a positive Igenex Lyme test, negative by CDC and most of my doctors say it's not Lyme.
My problems started in 1979 after moving into an apartment in San Diego and being bitten by hundreds of fleas and maybe some ticks. I had hundreds of welts on my legs and there were several bites that looked like bulls eyes but who knew back then? Shortly after that I started seeing floaters, was diagnosed with uveitis and moved back east because I was SOOOO tired.
I am also interested in other's stories.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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posted
I was found to have a granuloma in my lung about 2 yrs ago. I have not been dxd with sarcoidosis....yet.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
fyi, in what i posted today in medical, lyme and chronic fatigue; there is a large write up there of info on SARCOIDOSIS; please read it for more info!
sunny, i feel so bad for you with 22 eye surgies and losing your eyesight in one eye. May your other one remain good for you to enjoy the beautiful sights we all take for granted!
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
My first DX was Sarc ......... I refused steroids. Must have been a gut feeling. The STUPID doc insisted it was sarc because I had a granuloma in my lymphnode. Pathology even said it could be sarc but was not positive. NOT ONE OTHER SARC SX. Had about 38 Lyme SX and an infected, necrotic tick bite in my head 3 months prior ...... but I didnt have lyme (according to the idiot duck) because my test was negative. What a bunch of crap!!!!!!!!!!!!
Anyway, I think Sarc is just another gargage can dx ..... like fibro and CFS. I hate doctors ............ except a few very special ones.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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I'm so sorry to hear of your Sarc diagnosis. As others have posted, Lyme and other bacterial infections are implicated in Sarc.
I know of someone who has suffered from the serious vision loss you describe. Her mother's name is Margo and she posts at and is a moderator or board staff person at www.marshallprotocol.com
I would urge you to contact Margo and to ask at the MP website whether or not any other Sarc patients have suffered the serious inflammatory response resulting in the type of uveitis and vision loss you are experiencing. As I recall, there are several Sarc patients who also list uveitis as a co-diagnosis who have successfully managed similar symptoms and preserved their sight after vision loss at the MP forum. Margo, herself, is very knowledgeable about the serious eye involvement resulting in vision loss.
I must warn you that the forum I mentioned above is heavily censored - even private messages are read by the moderators. They also have a bias towards Sarc and try to limit discussion of Lyme and co-infections. That said, I'm living proof their therapy works for Lyme disease too, even though I no longer post there myself as a result of the board's tone and I seldom discuss it elsewhere for similar reasons.
Their therapy has been considered very controversial here at Lymenet, but it has provided me with real and lasting answers for my own Lyme and co-infections. I did not have the Sarc component and the granulomas that their protocol was designed to treat, but I know many who did and they have a successful track record when it comes to treating that disease model. I'm certain based on what you have written that they could help you find answers.
The MP website might be able to provide you with a doctor referral list directing you to someone who could help you before you lose your sight.
Like Lyme disease, Sarcoidosis is a disease that affects multiple systems. The people at www.marshallprotocol.com recognize the infectious etiology of both disease and use multiple antibiotics to treat it along with Benicar, which is used to arrest the runaway inflammatory response and redirect the immune system. I really hope that you will research their site and ask some questions there. Even though their emphasis is not on Lyme, the patients at their site are very supportive and knowledgeable and several of them suffer of them have suffered from and seen resolution of the serious eye symptoms you are describing.
They have another site as well with a lot of information. www.sarcinfo.com
posted
LST, thanks for coming on this post and posting your extensive, 1st-hand knowledge of the MP board, moderators, the extreme censorship of the board, and private messages are NOT private!
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My mom is sick with the same symptoms that I have. She was diagnosed with sarcoidosis years ago and given sterioids. Shortly after this, in her early 60's, she became so ill that she had to go into assisted living and has been there since (almost 15 years).
A few years ago they decided that she has an atypical form of sarcoidosis. I'm sure she has lyme and co-infections like I do.
I read that the differential for bartonella is sarcoidosis. I have the red streaks. I think her "sarcoidosis" is actually bartonella or lyme.
posted
LST-thank you taking the time to write such a compassionate post. Your compassion comes across in your writing.
I have tried minocin and Benicar but have not stuck with them for any length of time. I know that T.M. is very adamant about his protocol and not very flexible. I have so many symptoms of all of these diseases, some of my doctors have three large volumes for me (very embarassing)!
I've gone the steroid, methotrecxate route in the early 90's. I think the methotrexate saved the vision in my good eye because when the surgeries were performed on my first eye I healed too quickly and that caused unrelenting glaucoma and three rejected corneas and many other problems. The lenses have been removed from both of my eyes which makes life very difficult.
I will go back to the Marshall website and do some reading. It's just very difficult, as we all know, to find what works while doing no damamge.
Thanks again for all of this great information and support on this site.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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