This is topic Acrodermatitis Chronica Atrophicans??? in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/50242

Posted by Penn92 (Member # 9207) on :
 
I posted on a recent thread about painful red sores I had gotten on two toes a few years back. The toes have never looked normal again, though they no longer are painful and swollen the way they were back then.

I also have extreme dry skin/discoloration on the top of my right hand and on the fingers that was extraordinarily uncomfortable for several winters in a row. The problems usually started in November sometime, but this year, as soon as I started on zith in August, the symptoms started and have slowly subsided for the most part.

Occasionally I will get a flare of itchy redness on that hand, but nothing like the prolonged problems from other years.

Does this sound like ACA to those who have experience with it? I traveled to Spain in 1986 and was wondering if my exposure might go back that far(!!!!!!!!) since ACA is more prevalent in Europe.

Any info on ACA, how common it is in the US, etc. would be appreciated.
 
Posted by MagicAcorn (Member # 8786) on :
 
According to this abstract which I've supplied the link to the strain that causes ACA (borrelia afzelii) is absent in Spain.


http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=87537


These findings indicate greater genospecies diversity of B. burgdorferi sensu lato in Spain than in other parts of Europe. The only genospecies not present was B. afzelii, even though this species is the second most frequently isolated throughout Europe (25, 54). Based on these results, B. afzelii may be absent at the southwestern margin of the continent. Accordingly, B. afzelii has not been detected in patients in Spain (1), and there has been an absence of descriptions of B. afzelii-related cutaneous manifestations in clinical series
 
Posted by Penn92 (Member # 9207) on :
 
Thank you for that information. Does ACA occur in the US at all? I might need to research Mexico as well as I've been there several times.

Does anyone with experience with ACA think my experience sounds familiar? I see my LLMD on Monday, so I'll talk with him about it, but in the meantime, I'm always the curious sort.
 
Posted by MagicAcorn (Member # 8786) on :
 
I am European, and have been back to Europe since being sick. I have lots of skin issues but have been reassured by my doctor I do not have ACA.

My opinion of ACA is that if you had it you would know. It is extremely painful, and the skin has an almost translucent appearance. I get the impression it would be hard to ignore, and you would know if you had it and so would your doctor. You would be quite interesting to doctors if you did have it....?

Sores on toes can be anything. I had surgery for a hammer toe where they put in a pin to straighten it out. I would got to the podiatrist or dermatologist to check it out. Maybe take a picture too for your records in case it spontaneously went away.

Good luck with finding the answer.
 
Posted by Nebula2005 (Member # 8244) on :
 
I've had strange skin issues for several years now.

On my lower legs, I have small red bumps that one doctor said was petechiae (small bleeds) but another doctor said wasn't because they're just bumps. . . as time has passed and I've gotten sicker, and have started treatment, these are a permanent part of my body instead of coming and going like they did for several years.

None of the many doctors I've shown this to know what exactly to call it. It doesn't hurt or itch exactly but does get sore as do the muscles in my shins. And my ankles swell. It's worse on my left leg, the same as the arthritic knee.

I also have cyst-like sores on my upper arms, that act like a rash instead of like acne, but look a lot like pimples.

My legs are getting leathery-looking, and I've noticed that the skin on my thighs is getting a tissue paper look.

Is this ACA? I don't know. Would any doctor in the US recognize it if it were? I don't know that either. I've never been to Europe, I got bit in 1989 in Colorado, a state where Lyme doesn't exist, of course.

From what I've been able to find online, legs and toes and hands are all places where ACA happens. The pictures are hard to see, so I'm not sure if any of it LOOKS like what I have.

The disturbing thing about it is that it causes permanent skin damage if it isn't treated before the skin becomes sclerotic.

Heavy sigh.
 
Posted by T2JRW (Member # 10663) on :
 
Take a look at Karen Vanderhoof-Forschner's book on Lyme disease, Everything You Need to Know About Lyme Disease. In the section describing symptoms, there is some good (but depressing) technical information about ACA.

My hands and the bottoms of my feet have been bright red most of the time since I relapsed in 2003. When I go off drugs, one of the nasty side-effects is that my extremities almost turn orange or purple! Now my skin has started to become dry and parchment-like, as Forshner's book describes. This began last summer when I was using adequate hand-cream, so I know that it's not just the cold weather or hot water we use in winter. If I miss one night of Neutrogena heavy-duty hand-cream, my skin practically starts peeling off.
 
Posted by MagicAcorn (Member # 8786) on :
 
I am indebted to this woman, Karen Vanderhoof-Forschner, if it wasn't for her I have no idea where I or my boy would be.

Thanks T2JRW for reminding us all of a great book.
 
Posted by Penn92 (Member # 9207) on :
 
See - that purple coloration is exactly what those toes looked like back when. At times the hand looks purplish also.

Now that I'm looking, the veins on the backs of my hands are very prominent. Not simply visible like the skin is thin, but bulging. Yuck. Wonder when THAT started.

Anyway, thank you all for your input. I've requested the book from the library, so I should have it in a few days.

If anyone else has 2 cents to pitch in, I welcome any and all thoughts.
 
Posted by badkitti30043 (Member # 2889) on :
 
I had an ACA rash that was mistakenly misdiagnosed for many years it was on my hands and feet both- started on feet and then as on hands .. oddly it started before my only true confirmed /known tickbite & bullseye rash in 1996 ,

I had some of my lyme symptoms including the fatigue and decline in my overall health, and immune system, and knee swelling going back years before the known tick bite.., It all started after the rash began so its possible it was to bite but I will never know for sure and likely different strains from different states here I was.

I was not tested until 7 years after my known rash & bite & tick removal-0 it took so long because of course the docs here said it was imposable for me to be infected in 1996 when I went in and still had the bulklseye rash.. and I was stupid and believed them till it hit the neuro stuff hard much later , I just ignored most of the seemingly unrealated symptoms till then..but could not let it go after it got deeply into by brain functioning.

Anyway on my medical records per an excellent LLMD notes it finally recogzized the rash that I had for 14 years as an ACA rash after I was in treatment a few weeks and it cleared after the IV meds, It was originally said to be excema or fungal but never responded to any treatment over all those years till I was diagnosed with finally lyme in 2002..

I was on long term IV abx for 15 months straight , The 1st IV abx. I was only on 6 weeks due to drug allergy but it cured the rash up and its been gone since the end of 2002.

My end guess would be I had to have been exposed two seperate times.

Be interested to watch this thread for all the info as its usually a specific strain..that produces the ACA rash if I recall correctly.

IV PRIMAXIN WORKED for me thats an imnipenim abx. in the penicillan family I believe. ( spelling will be wrong)My W key is not working right so if something doe not make sense add a W to it..

[ 15. December 2006, 12:30 AM: Message edited by: badkitti30043 ]
 
Posted by Tincup (Member # 5829) on :
 
If I weren't so tired I'd chat forever.. as I usually do.

But it's your lucky night!

[Big Grin]

Check posts on a search here, under my name. I have posted about the early presentations of ACA, Reynauds, rainbow colors, and ACA appearing like scleroderma.

For good ACA pics.. look up pics on the internet for scleroderma.

You can be most anywhere and get Lyme and have ACA. Kinda like they use to think you could only be bitten by deer ticks in CT to have Lyme disease. NOT!

I just did a quick peek of my ACA literature here on my computer.. and I have lots of files.. but all are VERY long.. like 30 pages or more each.

Either the LDA site.. or LDF has good pics of ACA. Can't remember which.. brain quit a while back.

My skin has the paper thinness, linear lines, and colors on/off. It's now on hands.. both of them on the back side and up fingers.. and both feet... on the tops and near toes to the back of the ankles. VERY see through (translucent) there. When it is really bad it goes up arms.. my forearms.. and now even up to shoulders.

It has extended up my shins to the knees now.. and made it so that to touch my legs along the shin bone the skin comes off and looks kinda like a blister has popped open where I've accidently rubbed it. Can't kneel down without the thin layer of skin coming loose on my knee caps now. Having trouble wearing long pants that touch my legs and knees cause they can rub the skin loose from my legs.

Knees and thighs have that reddish kinda look.. like a bit sunburned.. and are wrinkled with paper thin upper layers of skin. Also the skin there is shiny looking... and a bit translucent.

The skin is coming off my elbows.. and it is hard to set them on anything.. especially without pain.

SOMETIMES this condition is very painful. Other times not. Sometimes fingers, hands, feet swell a little bit too... but not too often. Looks more like I'm dead most of the time. A friend of mine near-by me was just put in the hospital because her ACA is now covering 70 percent of her body.

My hands and feet and skin are VERY fragile. It's hard not to bump them or rub them. Even to pick up wet clothes from the washer rubs my hands too hard. My concern is bumping or rubbing down to the bone... which is almost totally visable anyway... and which I've done 2 times now. More concerned that the open spots will get an infection.

And it's not like I don't already have enough INFECTIONS!!! HA!

Where I've accidently rubbed it and it's finally healed.. there are scars.. real thin ones.. kinda purplish colored. It takes a long time to heal there also.

The funny part is the bottoms of my toes and certain spots on my feet. Sometimes.. this even sounds weird... but for no known reason they suddenly get BRIGHT white... and have NO feeling other than a stinging pain if I don't do something about it.... and they kinda look like no blood is getting in certain areas.. and then they sort of deflate... and get flat as a pancake. Like someone let the air out of my toes!!

Actually the bottom parts of the toes will look like flat, bright white pebbles, like you see on the seashore in the sand. This happens mostly when they are chilled I think... and I have to carefully rub them in the shower with warm water till they "come back to life".

And what was that I said earlier? Not going to "chat".

HA!

Just trying to share what I see with my ACA and hope it helps you "connect"??

Hope this helps. If not.. give me a ding a ling and I will try to find time to search.. or send you ACA info.

Night night!

[Big Grin]
 
Posted by Tincup (Member # 5829) on :
 
Just found this... old post pieces I'd saved. My early explanation of what was happening...

``````````````````````````````````````````````


I have colorful pink, reds, blues, and green colors appearing in different places on my
body. NO.. I am not kidding... Normally I would be kidding.. but not this time...

The soft part of the palm, under the thumb, on both hands, is changing colors.. and is
mostly very pretty red and blue/purple hues..

The knuckles of my hands, and the fingers (back of the hand side) between the top and
middle joints is blue and reddish pink too. The rest of the fingers are yellowish/greyish.

The outsides of the tops of my feet and across the toe knuckles are blue with shades of
light yellow and pink mixed throughout...

The outside soft part of my left hand, below the pinky is blue too. The rest of the hand is
white, yellow, pink, and greyish...

My knees are circled in pink.. JUST WHAT I ALWAYS WANTED.

In addition.. my chest is discolored here and there with reddish, actually sort of maroon
colorations splotched in certain areas we don't want to discuss...

Not a rash.. It is coming from within.. Not due to cold or hot or temperature. Not painful
or itchy...

No new meds.. no new foods or soaps.. no new anything.. oh... except the B-12 shot I had
Friday... just before this started... hmmm.. Just remembered that...

The color comes and goes.. sometimes very vivid and bright..

I had it most of Saturday and I tried to ignore it.. it faded out eventually and today it is
back again.. but less noticable.. fading in and out...

H-E-L-P!!!!!!!!!!

What in the world is this from? I guess I have had about every symptom so far.. except the
swollen testicles of course.. but I haven't even HEARD of this one!

Any ideas before the famous "pot of gold" is hidden under my chair?


If you need me.. I will be "some where over the rainbow".. looking for a brain...

IP: Logged
Tincup
Frequent Contributor

Posts: 9303
From: THE MOON
Registered: Oct 2000
posted 11 March 2002 18:16 [Click
Here to See the Profile for Tincup] [Edit/Delete Message]

[Reply w/Quote] Well... I
just found out the reason I believe..

If this is happening to me.. maybe others are noticing these things too.. Hopefully not. But
if so.. maybe this will help you?

Here are some pictures that look like my colored skin problems..


Pictures:
http://www.dermis.net/doia/diagnose.asp?zugr=d?=e&diagnr=710130&topic=t

More advanced pictures:
http://www.dermis.net/doia/diagnose.asp?zugr=d?=e&diagnr=710110&topic=t

Breast picture:
http://www.dermis.net/doia/image.asp?zugr=d?=e&cd=7&nr=111&diagnr=701000

Hand picture:
http://www.dermis.net/doia/image.asp?zugr=d?=e&cd=63&nr=85&diagnr=701005

Here is some information:

http://www.apnisehat.com/diseases/scleroderma.htm

Scleroderma is a connective tissue disorder that gradually tightens and hardens the skin.
Tiny
blood vessels (microvessels) throughout the body also may be affected, causing
widespread
damage to the internal organs. Although the disease usually affects the hands, face and
feet,
impaired blood flow through microvessels can eventually injure the body's digestive,
respiratory
and circulatory systems. The disease can have many manifestations. Doctors generally
classify
scleroderma as limited or systemic, depending on the degree to which the skin is affected.
The
widespread form of the disease is often called systemic sclerosis and can become life
threatening.
Women are affected in much greater numbers: They develop limited forms of the disease
three
times as frequently as men. The overall survival rate for people with a limited form is
similar to
that of the general population. However, survival rates for people with systemic
scleroderma are
significantly lower. More than 80 percent of people with systemic scleroderma are women
between 30 and 50 years old. In the past two decades, longevity has improved for people
with
systemic scleroderma; now 80 percent survive five years or more. Children rarely develop
the disease.


SYMPTOMS

The symptoms and manifestations of scleroderma vary widely between individuals, and
accurate
diagnosis is often difficult. The most commonly reported symptom is the progressive
tightening
and hardening of the skin, usually in the arms, legs, hands, feet and face. The skin
continues to
thicken during the first two to three years of the disease, after which thickening ceases and
may
even recede.
Symptoms of scleroderma may include:
Gradual tightening and thickening of the skin
Swelling of the fingers, toes, hands, feet or face
Tingling, numbness or puffiness, or skin discoloration
Small white bumps under the surface of the skin
Cold sensitivity and change from blue to red tint in hands and feet (see )
Telangiectasias (red spots from permanently dilated tiny blood vessels) on the fingers,
palms, face, lips or tongue
Ulcers or sores on fingertips, knuckles or elbows
Brittle bones that may easily break (see )
Five particular symptoms that sometimes occur together have been clinically recognized as
a
variation of scleroderma called CREST syndrome. The acronym CREST stands for
calcinosis
(painful calcium deposits in the skin), Raynaud's phenomenon (abnormal blood flow in the
hands
and feet in response to cold or stress), esophageal dysfunction (problems with swallowing
caused by internal scarring), sclerodactyly (tightening of the skin on the fingers or toes)
and
telangiectasia on the hands, palms, forearms, face and lips. People with CREST syndrome
generally have a relatively mild form of systemic scleroderma.
 
Posted by treepatrol (Member # 4117) on :
 
Yes
 
Posted by bpeck (Member # 3235) on :
 
I have read quite abit written in Germmany about ACA.

ACA occurs in late stage UNtreated Lyme. It has 3 stages of development - the inflammatory, the chronic and the tertiary.

There is literature published on the cellular and histological profile of biopsies from ACA lesions.

It a destruction of the elastin layer, and over time thins the skin. It's normally on the arms and legs. Eventually there is problems with the blood vessels (as the skin protects the blood vessels).

Let's hope your sking conditions are not ACA.

You should probably get a biopsy.. but I can tell you- if youre in the United States- no Dr. will even recognize the pathology report - even if the language matches ACA's pathology profile.

Considering what I know about ACA - it'll be better if you actual have something else. Once ACA gets to it's 3rd stage- there is no cure.

Barb
 
Posted by Penn92 (Member # 9207) on :
 
Good grief, mine is not anything near as severe as some of those pix! [Eek!]

I'll ask LLMD on Monday what he thinks. Not knowing when I might have been bitten or whether I have had multiple bites, I may have an early ACA presentation, so maybe the abx regimen I'm on will do the trick.

What made me think the problems were Lyme-related and possibly ACA is the fact that they flared with abx treatment and have diminished ever since.
 
Posted by Nebula2005 (Member # 8244) on :
 
Medical photos of skin conditions lean more toward the "interesting" (or really scarey), rather than "typical". I think dermotologists like to see who can capture the most gross example.
 


Powered by UBB.classic™ 6.7.3