bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Hi Jillybean:
I read your purple rash description in another thread and the dermatologist that helped dx it as Lyme.
ACA (Acrodermatitis Chronica Athrophicans) is a late manifestataion of UNtreated Lyme. A German Dr. was seeing this condition in the late 1800's and it was only very much later attributed to Lyme.
It's a degradation of Elastin over time. Elastin is what gives your skin it's "elasticity" and it'a also present in big blood vessels.
This is why it gets mis dx'd as vasculitus - when it gets dx'd at all. Even in Germany today ACA gets misdx 80% of the time.
ACA comes on in 2 stages- the early stage is the inflammatory stage - and alot can be done at this point if abx are taken- the next stage or late ACA is when the degradation occurs and the skin (or vessels) get thin.
ACA is what's left of my 30 year untreated case of Lyme.
There's very little written in the literature about it or how to treat it after damaged has been done (most of it's in German).
I have 2 large areas on both forearms where there's been a recurrance of the problem over the years- and I just don't know if what I'm seeing is old damage or not as sometimes the sites are more visable than at other times.
I am about to do research on what steps I need to take to take to help slow the damage (if that's still occurring I don't know) or repair damaged tissue (Elastin) -
but if your Derma has any ideas (if ACA is what you have) then I'd be interested in talking to you.
I'd be interested to talk to anyone who has a true case of ACA... we can contact by PM.
Thanks, Barb
Posts: 1875 | From VT | Registered: Oct 2002
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Thanks Barb..I almost missed this..Yes Jill was diagnosed but I am trying to find help for a friend so while this doesn't sound great, may help to put a name on it..
Good luck..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Hi bpeck, I found your post very iteresting, and googled it to see if I could find pictures. I did find some, but they do not look at all like what I have. They look more like a general over=all redness and swelling, while mine are in more oblong patches that seem to run together. The one on my hand is not raised at all.
I will ask my LLMD when I see him on the 13th if it is the same and let you know. I find it fascinating that in all the research I did months ago on rashes, Lyme rashes, etc, this never emerged.
Thanks for the heads-up, and I'll let you know what I find out.
Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Jelly:
No mines not raised either. It's destruction happening below the surface of the skin. Mine can actually look sunken at times.
How long have you had Lyme, and how long was it untreated?
posted
Only the patch on my hand is not raised. The ones on my legs were raised.
My ELISA test came back positive in Oct. I didn't see an LLMD until mid-January (had to play the duck shuffle).
LLMD diagnosed me with late stage (chronic), as well as neuro. I don't remember a rash, and I guess because I live in Florida, which is considered a non endemic area (although deer are everywhere), he thinks I got it 35+ years ago when I lived in PA and rode my horse everyday.
For the past 10 years I have had various symptoms, and got the usual run around from my ducks.....you're under too much stress, your bloodwork came back normal, etc.
It wasn't until this rash came up that gave me something I consider "tangible" for them to dig deeper. I think we all know our bodies pretty well, and all along I've known something was wrong with me, it was just a matter of time before they figured it out.
While I'm not thrilled I've been diagnosed with this disease, it does relieve me to know that they now know what I already knew (make sense?) I know that things could be much worse, and I should be thankful, but I'm not having one of those days today!
Take Care, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Yah- I know how you feel.
If I get any good progress and can point to something specific that improves or repairs damage from ACA - I'll post it here.
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