Aa
Looking for anyone who has Acrodermatitis Chronica Atrophicans with Lyme Disease
I have what doctors believe is ACA, a late manifestation of late Lyme Disease. My skin is atrophying and I don't know if it will ever stop, based on what I have read.
Has anyone had this before and stopped the progression through antibiotics or other means? It is all over my body and getting worse. I'm in a panic as no one in the U.S. seems to know what to do. I've read so much of the same information.
I just want to know if it can truly be stopped and if dermatological procedures can help reduce the look of the atrophy and sunken spots. Without trying to sound rude, I am not looking for what it is how how it manifests. That I have l learned. Just how or can I truly have a prayer of stopping progression and working to get skin and sunken areas back to some degree. I have seen this coming fro about three years but no doctor would believe me until tests now show it to be true.
Thanks so much.
Has anyone had this before and stopped the progression through antibiotics or other means? It is all over my body and getting worse. I'm in a panic as no one in the U.S. seems to know what to do. I've read so much of the same information.
I just want to know if it can truly be stopped and if dermatological procedures can help reduce the look of the atrophy and sunken spots. Without trying to sound rude, I am not looking for what it is how how it manifests. That I have l learned. Just how or can I truly have a prayer of stopping progression and working to get skin and sunken areas back to some degree. I have seen this coming fro about three years but no doctor would believe me until tests now show it to be true.
Thanks so much.
Thanks for comments.
Understand about looking in mirror. I am learning not to and to stay away from the photos of those with ACA. It is all difficult to take in, especially if you have always been healthy and active. But, the goal is to keep looking for answers. You wouldn't be on here if you had given up on it all. Hard to admit as a man, but I do cry sometimes about this. I cry more for the time I lose with my kids from it. Without a word, they motivate me to keep going.
My goal is to find out what is the best way to stop progression of this. I've lost about 13 pounds, but only weighed 176 to begin with (6'0"). I've noticed my strength is still good. Just appearance as my face looks a bit more sunken and people used to seeing me can tell I've lost weight. Still work out with weights and some aerobic, but nothing like I used to. Running and competing is a passion for me, and I miss it.
When I first had Sweets Syndrome hit in October 2011, the first concern was if lukemia would follow. So far that has not been the case, and the Lyme Disease would explain why Sweet Syndrome took place, which comes with an infection (or pending lukermia in men a lot). At the time, the doctor told me I did not have Lyme Disease because he is short minded when it comes to Lyme Disease. I told him almost two years ago the skin was going, and he thought I was crazy. Put me on steroids for the Sweets Syndrome.
I am beginning to belive this was passed down to me from family. Grandparents from Armenia. Found out yesterday, and I apologize if I have already mentioned this, my grandmother had an episode with Bells Palsy in the 1950s. My mom is 97 and always been healthy. So I don't know, but it's a thought. I've never been out of the U.S.
As far as looks, I hate it, but it is better than dealing with a cancer. I try to look at it that way. Not saying that is easy. I announce big and small events around Atlanta for a living, so staying at least "normal" looking is important from a financial standpoint. So is gaining back energy. And I plan to, even if it takes some really bad times.
The positive is, if this bothers someone bad enough and the progression can be stopped perhaps there are procedures that can be performed to help. That is an answer I am looking for. Fillers, if needed, laser therapy on skin. Supplements to bring collagen back. I constantly look for something positive to take me to tomorrow.
HOPE. Even when you have trouble finding some, keep looking until you do.
That is why I appreciate everyone on this forum. What a great group. Don't know what I'd do without you, and I hope some of what I mentioned today may help you.
Understand about looking in mirror. I am learning not to and to stay away from the photos of those with ACA. It is all difficult to take in, especially if you have always been healthy and active. But, the goal is to keep looking for answers. You wouldn't be on here if you had given up on it all. Hard to admit as a man, but I do cry sometimes about this. I cry more for the time I lose with my kids from it. Without a word, they motivate me to keep going.
My goal is to find out what is the best way to stop progression of this. I've lost about 13 pounds, but only weighed 176 to begin with (6'0"). I've noticed my strength is still good. Just appearance as my face looks a bit more sunken and people used to seeing me can tell I've lost weight. Still work out with weights and some aerobic, but nothing like I used to. Running and competing is a passion for me, and I miss it.
When I first had Sweets Syndrome hit in October 2011, the first concern was if lukemia would follow. So far that has not been the case, and the Lyme Disease would explain why Sweet Syndrome took place, which comes with an infection (or pending lukermia in men a lot). At the time, the doctor told me I did not have Lyme Disease because he is short minded when it comes to Lyme Disease. I told him almost two years ago the skin was going, and he thought I was crazy. Put me on steroids for the Sweets Syndrome.
I am beginning to belive this was passed down to me from family. Grandparents from Armenia. Found out yesterday, and I apologize if I have already mentioned this, my grandmother had an episode with Bells Palsy in the 1950s. My mom is 97 and always been healthy. So I don't know, but it's a thought. I've never been out of the U.S.
As far as looks, I hate it, but it is better than dealing with a cancer. I try to look at it that way. Not saying that is easy. I announce big and small events around Atlanta for a living, so staying at least "normal" looking is important from a financial standpoint. So is gaining back energy. And I plan to, even if it takes some really bad times.
The positive is, if this bothers someone bad enough and the progression can be stopped perhaps there are procedures that can be performed to help. That is an answer I am looking for. Fillers, if needed, laser therapy on skin. Supplements to bring collagen back. I constantly look for something positive to take me to tomorrow.
HOPE. Even when you have trouble finding some, keep looking until you do.
That is why I appreciate everyone on this forum. What a great group. Don't know what I'd do without you, and I hope some of what I mentioned today may help you.
First I would say that there is nothing at all wrong with a male crying. You experience the same pain and frustration that all of us do.
Most of us have experienced trying to find an answer and not getting any for a long time. Nobody caught mine for 18 years. In and out of hospitals, painful unnecessary tests for nothing.
The truth about Lyme is its a crap shoot. There is not one single protocol at this time that will work for everyone. It affects everyone differently.
I try to think like you do, that it good be worse. I have heard of cancer patients say they rather have cancer then lyme.
I was rear ended by a truck a few weeks ago. The pain of that, on top of my Lyme pain almost pushed me over the edge but as my fiancee always says to me...these are the cards we have been dealt and we must deal with them.
We are here for you and wish you the best.
Most of us have experienced trying to find an answer and not getting any for a long time. Nobody caught mine for 18 years. In and out of hospitals, painful unnecessary tests for nothing.
The truth about Lyme is its a crap shoot. There is not one single protocol at this time that will work for everyone. It affects everyone differently.
I try to think like you do, that it good be worse. I have heard of cancer patients say they rather have cancer then lyme.
I was rear ended by a truck a few weeks ago. The pain of that, on top of my Lyme pain almost pushed me over the edge but as my fiancee always says to me...these are the cards we have been dealt and we must deal with them.
We are here for you and wish you the best.
"I am beginning to believe this was passed down to me from family." I'm more inclined to think Lyme is a little gift to each of us from our common benefactor, Mother Nature.
The tiny Lyme ticks are everywhere, and the spread through the country (and indeed the world, via different species) has been dramatic.
The various strains of Lyme arose due to geographic isolation, but the frequency and speed with which we humans (and our pets, as well as migratory birds etc.) travel country to country and continent to continent cause me to think the docs are shortsighted when looking only for certain strains in the geographical areas where they originated.
I believe there is still serious-minded literature in the market stating that there is one strain of Lyme in the northeastern US, and another in a small area of the Pacific coast, but big blank spaces in between, and never the twain shall meet.
But our travel patterns and frequency have blown all that out of the water. The old days of quarantining visitors on Ellis Island to avoid introducing epidemics into North America are long gone.
So ... where and how we each got Lyme, many of us will never know, and when the medical community accepts that, the docs' mental blockades ("We don't have Lyme in this state") go away, aiding diagnosis and treatment for everyone.
Just my opinion!
The tiny Lyme ticks are everywhere, and the spread through the country (and indeed the world, via different species) has been dramatic.
The various strains of Lyme arose due to geographic isolation, but the frequency and speed with which we humans (and our pets, as well as migratory birds etc.) travel country to country and continent to continent cause me to think the docs are shortsighted when looking only for certain strains in the geographical areas where they originated.
I believe there is still serious-minded literature in the market stating that there is one strain of Lyme in the northeastern US, and another in a small area of the Pacific coast, but big blank spaces in between, and never the twain shall meet.
But our travel patterns and frequency have blown all that out of the water. The old days of quarantining visitors on Ellis Island to avoid introducing epidemics into North America are long gone.
So ... where and how we each got Lyme, many of us will never know, and when the medical community accepts that, the docs' mental blockades ("We don't have Lyme in this state") go away, aiding diagnosis and treatment for everyone.
Just my opinion!
Thanks for replying to my query about your travels.
Which brings this question to my mind----- and it IS a rather far-fetched question but not out of the realm of possibility.
Have you ever considered that you might have gotten this European bacteria congenitally? The fact that your mother 'was healthy' doesn't mean she couldn't have had asymptomatic Lyme. Your grandmother had one of the prime signs of Lyme------ but I guess it could have been caused by something else.
As I said----- it's far-fetched and I'm not saying it's true in your case----- but it could be a reason.
Here are some tidbits for you to chew on:
Karen Vanderhoof-Forschner wrote:
"My husband and I co-founded the LDF, when my son Jamie was diagnosed with congenital Lyme Disease."
http://www.lyme.org/
In 1999 the CDC declared
"Transplacental transmission of B. burgdorferi has been reported, but the effects of such transmission on the fetus remain unclear. The results of two epidemiologic studies document that congenital Lyme disease must be rare, if it occurs at all. "
The CDCs findings probably did not take this study (1995 in Austria) seriously:
http://www.ncbi.nlm.nih.gov/pubmed/7648832?dopt=Abstract
"Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme borreliosis."
"Six of these seven persons suffered from intermittent migratory arthralgias or myalgias, and one from acrodermatitis chronica atrophicans."
"In addition to urine, breast milk from two lactating women with erythema migrans was tested and also found reactive."
*************************************
Women in the US who have Lyme and become pregnant are advised to either not breast feed.
Dr B. in his guidelines (page 21) states:
"I also advise against breast feeding for obvious reasons as mentioned above."
Which brings this question to my mind----- and it IS a rather far-fetched question but not out of the realm of possibility.
Have you ever considered that you might have gotten this European bacteria congenitally? The fact that your mother 'was healthy' doesn't mean she couldn't have had asymptomatic Lyme. Your grandmother had one of the prime signs of Lyme------ but I guess it could have been caused by something else.
As I said----- it's far-fetched and I'm not saying it's true in your case----- but it could be a reason.
Here are some tidbits for you to chew on:
Karen Vanderhoof-Forschner wrote:
"My husband and I co-founded the LDF, when my son Jamie was diagnosed with congenital Lyme Disease."
http://www.lyme.org/
In 1999 the CDC declared
"Transplacental transmission of B. burgdorferi has been reported, but the effects of such transmission on the fetus remain unclear. The results of two epidemiologic studies document that congenital Lyme disease must be rare, if it occurs at all. "
The CDCs findings probably did not take this study (1995 in Austria) seriously:
http://www.ncbi.nlm.nih.gov/pubmed/7648832?dopt=Abstract
"Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme borreliosis."
"Six of these seven persons suffered from intermittent migratory arthralgias or myalgias, and one from acrodermatitis chronica atrophicans."
"In addition to urine, breast milk from two lactating women with erythema migrans was tested and also found reactive."
*************************************
Women in the US who have Lyme and become pregnant are advised to either not breast feed.
Dr B. in his guidelines (page 21) states:
"I also advise against breast feeding for obvious reasons as mentioned above."
I don't know that it matters whether a grown adult who has had Lyme for a long time got it from his/her mother. Doesn't change testing, diagnosis or treatment that I am aware of.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
