Who has Acrodermatitis chronica atrophica (ACA) ....

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dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/16/2008 7:06 PM (GMT -6)   
.....and could tell me more about it ???

I got it with Lyme and would like to hear from others who may have it too; did it get better with abx?? Did you already know you had Lyme before the skin was affected??

dorit

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/16/2008 7:13 PM (GMT -6)   
What does the skin condition look like and is it painful? Where is it located? I have something going on with my skin that they are calling allergic dernatitis. I have not heard the term ACA,it is caused by the lyme?

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/16/2008 7:38 PM (GMT -6)   
hi dowa,

YES, it is caused by lyme;

at the end, the skin gets very "thin", like parchment, you sometimes see the small blood vessels shinig through the skin which can give this areas a "bluish gleam";
the most / well- known form and location is on the fingers - it`s calles "madonna - fingers" at least here in europe, but you can have it everywhere, and it looks like a dermatitis;

that was the way they found out I have Lyme...... a dermatologist found several parts of my skin looking "strange"....I always thought this was Neurodermitis or came along with allergies I have; the doc asked my how I felt during the last time, maybe years, if I felt sick, was tired, had health problems which could not be explained ...I said yes,.. we made a test (elisa / westernblod) and I came out positive....


I have a link with pictures, I will try to find this link and post it immediatelly...

thanks for your posting!!!
dorit

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/16/2008 8:04 PM (GMT -6)   
here is a link with some pictures:

http://dermis.net/dermisroot/de/35111/diagnose.htm
(you can switch to english on the side !)

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/17/2008 1:52 AM (GMT -6)   
Dorit,

I think that I have it and was planning on showing my dermatologist and LLMD the different areas of my body that have vasculitis to the point that it looks like bruises, lots of shiny skin and red areas on body, loss of muscles - well I look like those pictures. I have suspected it for a while. I have been tested for sclera derma, in fact a complete rheumatological workup was done. In general dermatologists in the US don't have a clue - they just look at my poor red skin and prescribe a cream. I believe European dermatologists are more familiar with it.

I have late stage lyme. I also did a lot of traveling in Europe and Africa so I could have been exposed there as well as here in the northeast where Lyme is endemic and epidemic.

I see LLMD in early December so I will let you know.
Your life sounds very exciting and interesting I absolutely love England, Europe, and Africa (of course not all parts and what is going on now is very worrisome.) It is a shame because Rwanda and Uganda were so beautiful, as well as Kenya. Morroco was mysterious.

Take care, I am sure you must be worried. What is your plan for treatment? What is the prognosis?
Keep us informed.

bcaring

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 11/17/2008 12:02 PM (GMT -6)   
I believe I have this as well.  When I went to a dermatologist, he told me it was eczema and gave me a cream.   I don't want to waste my time with usless doctor appointments, so I'm not even sure if I could find a doctor that would properly test me for this.  I have seen those pics before, and I was absolutely convinced after seeing them that I have the beginning stages of ACA. 

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/17/2008 1:36 PM (GMT -6)   
Hi bcaring and Chris L,

thanks for your postings! sad to hear you may have it too, but glad to found you to exchange experience !!!

I have a testing for co- infections next week; the appointment with the lyme doc will be in January; it is not easy to make everything around lyme be done quickly. I am very happy that my dermatologist takes lyme serious!

I found different information around aca: some say, this is one of the chronic stages of lyme where the skin is affected too and it will not disappear, some say it gets much better, sometimes even disappears over time after abx; some info say if you get aca in the last stage of lyme, you normally don`t end up with neuroborreliosis; ....... I don`t know what to think about all these information.

I do not even know (maybe like you, bcaring) from where i brought this home: from our garden here or from elsewhere.... even this could make a difference as far as bands and westernblots and tests are concerned - I was told!

I keep you informed about this and what the lyme doc will tell me; after the appontment with him I will go and see my dermatologist again; she is very cooperative and open to help.

Would you like to keep me informed how this is developing with you? could be a great help!

Take care!!
dorit

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/17/2008 5:01 PM (GMT -6)   
Hi Dorit,

Question: If your dermatologist is taking this aca seriously and believes you have it, then is she not willing to start you on treatment now until you are able to see the LLMD in January? Are you doing holistic treatments, chinese herbs, or any kind of antibiotic.

Yes, I have read about the prognosis and it is a little disconcerting. My appt. with my LLMD is Dec. 2nd and I will ask who is a LLMD dermatologist. I also happen to have an appt. on Dec. 3rd with my regular dermatologist who may be open to this.

Take care,
bcaring

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/17/2008 6:02 PM (GMT -6)   
Hi bcaring,

my dermatologist ist willing to start treatment at any time; our "plan" is to wait for the coinfection results; I cannot take penicilin and i had serious problems with other abx, so I am somehow happy not to start too many experiments before I know if there is something else besides lyme and then we will choose the med/ ab combination;

At the moment I am on vit c and b, also tees: Artemisia abrotanum and Dipsacus fullonum; also Sinapis nigri (seeds) and healing earth for detoxing.

Are you on antibiotics at the moment?

Take care,
dorit

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/17/2008 8:32 PM (GMT -6)   
Dorit,

Yes, I am on a number of IV antibiotics. It would scare the heck out of anyone to know how many. I had a really bad case and after many months of treatment I am now much better. I still have a ways to go but I do have a life back. Very aggressive treatment by my LLMD.

I know that in Europe there is frequent use of herbs and holistic approaches. You will find many on this site who take this approach. I just didn't have any option - my symptoms became neurological - muscle twitching, terrible nerve pains.

I am tired so I have to go to bed but I will keep you in my thoughts Dorit, and I hope your co-infection results come back soon. It does sound as if you are on top of it and let us all know what the results are.

bcaring.
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