"I've had sarcoidosis since 1983, and it has not altered or limited my lifestyle," Mac says. "No one knows where sarcoidosis comes from or where it starts, and there's no known cause for this condition that effects primarily minorities."
posted
Thank you Betty; all blessings and hugs are appreciated.
Blue Skies....John
Posts: 134 | From North Carolina | Registered: Sep 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I was originally dx'd with sarc ........... turned out to be Lyme
-------------------- 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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posted
I have both sarcoidosis and Lyme. I'm a glow in the dark very fair green eyed blonde. I was told it must be TB and it couldn't be sarcoidosis because sarcoid usually strikes mostly African-Americans. I didn't fit the typical profile.
Then they did a bronchoscopy. The path report says sarcoid. So they gave me prednisone and then wondered why I started hallucinating.
This was after 3 weeks in 3 different hospitals with a tick bite on my right leg. No less than 25 different doctors saw the bite during the physical exam but didn't make a connection as to why I had encephalopathy, aphasia and dysphasia due to facial numbness. There's no Lyme in IL!
I had just returned from a motorcycle tent camping trip only a few days before I got sick with flu-like symptoms and a high fever. As far as I know sarcoidosis doesn't cause a fever. I had these spots in my lungs in a miliary pattern for over 7 years. I think my sarcoid was an incidental finding!
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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bettyg
Unregistered
posted
munch, so sorry to read of both sarc and lyme!
my co-worker ended up w/sarc and me chronic lyme for 37 yrs.; 34 misdiagnosed. hers came on very suddenly.
best wishes to you; did you find someone to treat you for both? hope so.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry, don't want to take away from the purpose of this thread but I want to mention that there seems to be a connection between lyme and sarc in some cases.
Munch, my mother was misdiagnosed with sarcoidosis for many years when she actually has lyme and probably bartonella. I found an e-medicine article that stated that the differential for sarcoidosis is bartonella. I have bart and I'm pretty sure she does. Last time she was seen by a specialist, after years of prednisone and getting sicker and sicker she was told that she does not have sarcoidosis but they don't know what she has.
I found some studies but there are others that refute this. I do think there is likely a connection for some people with sarc and TBI. It's possible that sarc is bart or some co-infection of lyme or some strain of lyme.
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.
Publication Types: Comparative Study Research Support, Non-U.S. Gov't
PMID: 9561361 [PubMed - indexed for MEDLINE]
1: Chin Med J (Engl). 1992 Jul;105(7):560-3.Links 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.
PMID: 1333393 [PubMed - indexed for MEDLINE]
If you want more, do a search on medline for lyme and sarcoidosis.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
hi terry, you didn't take away from the thread at all; you added more goodies to it!
big favor, will you edit by clicking on pencil on your studies and break up those long SOLID blocks into shorter paragraphs so neuro lymies like me can comprehend. looks interesting! glad you added to the cause.
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posted
I was reading Gigi's post on European Union action and noticed sarcoidosis mentioned in connection with a co-infection, Rickettsia Helvetica. So I googled for it, and there it was, about 3/4 of the way down the page, found in Sweden.
Posts: 13171 | From San Francisco | Registered: May 2006
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