posted
After being bitten by a tick in 2000, my skin began to thicken in 2003. It took 12 years to diagnose and, as of last week, I have been told I have Scleredema, an auto-immune disease that falls into the "rare disease" category. It is, in a way, similar to scleroderma but, supposedly, not as serious. My question is: Has anybody heard a connection between Lyme and Scleredema? I cannot find any literature on this. At the moment, my Lyme and Babesia tests are negative, but my skin is getting thicker and thicker... I am at a loss... Thanks.
Posts: 123 | From Los Angeles | Registered: Oct 2006
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Almost every Scleroderma patient on the Roadback website that has been tested for lyme is positive. Not CDC positive, but positive indications through IGenix and corroborated with an LLMD.
Are you being treated by a lyme-litterate doctor? There are people on that board that have recovered; scleroderma in remission with either low dose minocin treatment or lyme treatment.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Deep,
Sorry about your thick skin. And that really sucks considering you're a pear.
OK, can't help myself sometimes.
BUT, I can and will share ACA info with you. ACA- also known as Acrodermatitis Chronica Atrophicans- is a skin (etc) condition that indicates a person has chronic ACTIVE Lyme disease.
That is absolute. The literature, mostly from Europe, has it listed as a "chronic" Lyme disease manifestation with live spirochetes and evidence of spirochetes being found in biopsies.
ACA is being misdiagnosed as scleroderma/dema and my fear is that it is a lot worse than anyone knows with the number of misdiagnosed cases.
The bad part is, most scleroderma/dema folks are given steroids, making their situation much worse. They need antibiotics.
The pennicillin based antibiotics work well for some. Just DON'T follow the IDSA guidelines. They admit they know squat about it, but it is ok for them to state the treatment should ONLY be three weeks of doxy.
This is the SAME stinking protocol they recommend for early Lyme that doesn't work and leads to late-Lyme, that leads to ACA. They are so incredibly horrible, uggggggggg. Anyhow...
I wrote several different papers for the IDiot- I mean IDSA Review Panel- to get them to change their guidelines and one report was on ACA.
There are also some photos of the "stages" people experience with ACA on the site too at this link. Be sure to also see the ones marked "psoriasis" (mislabeled- needs to be changed now that patient had it confirmed as ACA). Hope it helps to see the scleroderma/scleredema-like manifestations.
quote:Originally posted by Deep in 'tis pear: I have been told I have Scleredema, an auto-immune disease that falls into the "rare disease" category. It is, in a way, similar to scleroderma but, supposedly, not as serious.
- There's a scleroderma and a scleredema???
I would try getting back on lyme treatment.
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