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.
Yeah, I like figuring stuff out. I do business consulting. Taking bits and pieces and trying to make sense out of it all. And after enough bad encounters with the medical community, I got a Merck manual and never looked back.
Murph,
I hear you. It sounds like you're working through things very thoughtfully. Your doc sounds like a solid citizen who is trying hard, but keep in the back of your mind that he's not that familiar with Lyme by his own admission, including not having dealt previously with b.afzelli. That he has had a patient with symptoms similar to yours is encouraging, but please consider having the diagnosis confirmed by another MD more conversant with Lyme and its nasty little cousins.
I understand that you are going to the Cleveland Clinic, but I paused when reading that the appointment is with the rheumatology department. Infectious disease docs, neurologists, and rheumatologists are three disciplines well known to be [often willfully] ignorant of Lyme disease, as it simply doesn't fit their existing disease paradigms. I just searched on line for "cleveland clinic 'lyme disease' " and will send you separately some of the results. It's not particularly encouraging, tho the results are a few years old -- but it may indicate an institutional mindset at work.
There is a lot of that in the Lyme world, too, where the mainstream docs are accustomed to having figured everything out a long time ago, and the rest is just details. I remember when AIDS was new and no one knew what it was all about, whether it was communicable like the common cold, and so on. The medical mainstream was in disarray, not knowing what it was dealing with and having no paradigm for approaching any ailment outside the received wisdom -- on the assumption that everything worth knowing about disease was already known. Lyme is much in that category as well: the entrenched medical interests are overall not comfortable with emerging diseases.
While preparing for the visit to the Clinic, I would in your situation be running on a parallel track to locate and line up additional avenues to pursue -- and parallel rather than serial. I know it's not the normal way to approach the medical world, but the institutional format the docs now inhabit calls for out-of-the-box thinking and tactics by the patients. (IMO, of course.)
I hear you. It sounds like you're working through things very thoughtfully. Your doc sounds like a solid citizen who is trying hard, but keep in the back of your mind that he's not that familiar with Lyme by his own admission, including not having dealt previously with b.afzelli. That he has had a patient with symptoms similar to yours is encouraging, but please consider having the diagnosis confirmed by another MD more conversant with Lyme and its nasty little cousins.
I understand that you are going to the Cleveland Clinic, but I paused when reading that the appointment is with the rheumatology department. Infectious disease docs, neurologists, and rheumatologists are three disciplines well known to be [often willfully] ignorant of Lyme disease, as it simply doesn't fit their existing disease paradigms. I just searched on line for "cleveland clinic 'lyme disease' " and will send you separately some of the results. It's not particularly encouraging, tho the results are a few years old -- but it may indicate an institutional mindset at work.
There is a lot of that in the Lyme world, too, where the mainstream docs are accustomed to having figured everything out a long time ago, and the rest is just details. I remember when AIDS was new and no one knew what it was all about, whether it was communicable like the common cold, and so on. The medical mainstream was in disarray, not knowing what it was dealing with and having no paradigm for approaching any ailment outside the received wisdom -- on the assumption that everything worth knowing about disease was already known. Lyme is much in that category as well: the entrenched medical interests are overall not comfortable with emerging diseases.
While preparing for the visit to the Clinic, I would in your situation be running on a parallel track to locate and line up additional avenues to pursue -- and parallel rather than serial. I know it's not the normal way to approach the medical world, but the institutional format the docs now inhabit calls for out-of-the-box thinking and tactics by the patients. (IMO, of course.)
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.
Thank you. I have the same goal as you.
I am still fairly weak but Jackie gives me hope, since she is cured, that my day will come.
Sorry, I have never heard of invanz. Wow, $1700 a month is too much.
I know that Flagyl and Tindamax are cyst busters.
Do better!
I am still fairly weak but Jackie gives me hope, since she is cured, that my day will come.
Sorry, I have never heard of invanz. Wow, $1700 a month is too much.
I know that Flagyl and Tindamax are cyst busters.
Do better!
1 Comments
Yes. Tindamax is said to be very effective. You could also try serrapeptase or nattokinase.
"Interpretation: Oral doxycycline is as efficient as intravenous ceftriaxone (Rocephin) for the treatment of European adults with Lyme neuroborreliosis."
http://www.ncbi.nlm.nih.gov/pubmed/18567539
Just one of many published and anecdotal reports. Enough that I believe it, although I did have IV 'just in case'.:) No real abatement of symptoms until I took IM bicillin LA. ---- which is NOT a recommendation that you try bicillin; just what worked for me.
http://www.ncbi.nlm.nih.gov/pubmed/18567539
Just one of many published and anecdotal reports. Enough that I believe it, although I did have IV 'just in case'.:) No real abatement of symptoms until I took IM bicillin LA. ---- which is NOT a recommendation that you try bicillin; just what worked for me.
2 Comments
My LLMD also prescribed IM Bicillin after a long course of different oral antibiotics (that have actually helped to a certain extent). I am really confident that the Bicillin is going to do wonders! Get well soon & never give up! It is an exhausting process but you will eventually feel better.
My LLMD also prescribed IM Bicillin after a long course of different oral antibiotics (that have actually helped to a certain extent). I am really confident that the Bicillin is going to do wonders! Get well soon & never give up! It is an exhausting process but you will eventually feel better.
I have had to work this out myself as doctors are not listening - surgery keeps triggering it off as I now have multiple problems - but hospital did see the circles on me legs and never diagnosed Lyme disease - I use Vaseline to protect skin and you would Acrodermatitis chronica atrophicansp I have 5 on me now due to lack of care and attention - been waiting for a skin specialist for 6 months as they would not believe - my skin is breaking and because if this I can see everything and tell the world - these parasites cause all our illnesses and doctors have made name for the actual diseases but it's only caused by our environment- everything and I'm going to tell everyone we can fix ourselves - all this medication is rubbish and doctors do t know - they wait for the problem and will never fix the cause so we need to fight back anything acidic will kill them and remove them from your skin / but we have to find the actual bacteria which is attacking us - we all need to stand together all over the world people are suffering and doctors think that's ok - well it's not and they need retraining - times have just changed and it's time they stopped assuming they know because they don't and send us to science - science is the one that knows not doctors - we need scientists - so let's find some - lets stand together- my brother has just been told he has problems - but they are the same as mine - but I can see what causing the problem I can tell everyone I can show everyone if they wish to see - I hate this but if I can help because my skin is breaking down I'm going to do it - so as soon as I get to specialist and show them videos etc I will let you know what they say - but it's science - not doctors - LETS STAND TOGETHER - Thousands upon thousands of people suffering because of Lyme disease and the knock effects and doctors - sorry - are useless - 8 holes large ones In my spine after surgery - bacteria - no help - no antibiotics although they won't work anyway - herbal herbal - and this hates tea tree oil - I will be back as soon as I can show them the nasties coming out of my skin this has been going for ten years with a neurological problem I went herbal I have my voice back - I have had foreign accent syndrome amongst many other vocal problems - I drank lemon juice - I now have my voice back !!!! Doctors don't like - laughing - one doctor said I must tell the world so hear I am I can show all what's damaging us - and it's not nice - stay strong and fight back - Rose Henderson Haworth
1 Comments
There is a typo - mistake - sorry -
Hi, I got bit in Robbinsville, then again two years later in Tellico Plains right after the tornado hit there in 2012. Fully cured both times but the first time took almost two years. Second time 60 days. Read about it here:
http://www.lymeneteurope.org/forum/viewtopic.php?f=10&t=4891
Good luck, the skin problem is from inflammation in your spinal column from spirochetes trapped in your cerebrospinal fluid.
Good luck, Will
http://www.lymeneteurope.org/forum/viewtopic.php?f=10&t=4891
Good luck, the skin problem is from inflammation in your spinal column from spirochetes trapped in your cerebrospinal fluid.
Good luck, Will
1 Comments
I believe I have really bad ACA and am having trouble finding doc to properly diagnose. I will travel anywhere in USA (I live in San Francisco bay area). I dont want to start abx without at least a doctor familiar with ACA (or a doctor who wants to LEARN...I know, wishful thinking).
I apologize for the sarcasm but dont know whom else to turn to. I can not live in this skin pain/burn much longer. I know if i went to the ER they would just pump me full of steroids.
ANY HELP would be so greatly appreciated. I have many, many photos as well.
Thank you all in advance for your kind help.
I apologize for the sarcasm but dont know whom else to turn to. I can not live in this skin pain/burn much longer. I know if i went to the ER they would just pump me full of steroids.
ANY HELP would be so greatly appreciated. I have many, many photos as well.
Thank you all in advance for your kind help.
What excellent news! Please keep us posted on how you are doing -- sending you and yours all good wishes for continued progress.
The ACA is almost gone completely. One small area of rice paper about 1/8" inch or less. Discoloration is gone and skin feels almost completely normal.
1 Comments
Could you please tell me where to start to stop the atrophy?
Thanks for the update. The ACA is what bothers me the most because the worse it gets, the more permanent damage may take place. I have it all over my body, through through lifting weights I have been able to keep muscle tone to hide some of the impact.
I had another herx a couple of days ago, just as bad as a couple of weeks ago. I was doing Biotox, Teasel, and Banderol, and within 20 minutes of eating a sandwich, I got sick. Stomach pain and then about 40 minutes later came vomiting, followed by hours of diarrhea. It was really traumatic again, and even noticed after the vomiting that both kidneys ached for a little bit (maybe a minute). I was afraid to put ANYTHING into my stomach during that time, and wasn't even certain it was a herx. The stuff that goes through your mind includes, "What if these herbs are harmful to my body, or hazardous in combination with each other? What if the homeopathic stuff really is toxic and can hurt something else long term?" I was sick for about six hours, all told, and then I slept a little bit. But this time I have had a new "reaction" after the herx: inability to focus. Like I was in hyperdrive with A.D.D. I would start a sentence I couldn't remember to finish, make a pot of tea and get distracted and never make a cup of it for myself, etc. However, that night as I was sleeping, I was awakened by that sensation under the ACA again. Like someone was touching it with a hot nail over and over. That lasted about an hour before I fell back asleep. The ACA is about half the size it was and barely even noticeable on my hand. From the size of a half dollar in width to about a nickel. And the discolored area has a normal colored circle in the center of it (matches the skin around the ACA) which I didn't have before. Will keep you posted.
Do you feel better and has the ACA continued to improve? My whole body has been impacted by it. Trying to get rid of Lyme as it is what causes the ACA, rather than the co-infections. And, as you know, the longer the skin issues go on the worse it gets and the harder it is to improve them. That puts an urgency to it.
I've spent my adult life working from a natural framework. I learned years ago that the body is an incredible self-healing machine. If we give it the fuel it needs and take away the things that irritate or break it down, it's capable of eliminating disease and toxins. That's an oversimplification, but it's the foundation of what I do when it comes to disease. I rarely take any pharmaceuticals. Instead of penicillin or doxy, I choose herbals that have antibiotic properties, like olive leaf extract or banderol or garlic. I never knew I had lyme until this time last year when my husband got it and I realized his symptoms were like mine...only mine had been going on for nearly ten years.
Did the doc explain why it was necessary to take you off ALL meds/herbs? Are there likely suspects among what you were taking that could be reduced or eliminated temporarily without taking you off everything?
I mean, I'm allergic to peanuts, but it doesn't mean I stop eating all together, y'know?
I mean, I'm allergic to peanuts, but it doesn't mean I stop eating all together, y'know?
You need to get tested for co-infections. Also read the article here about your antibiotics question: http://www.sheamedical.com/above-and-beyond-antibiotics
Glad to hear things are improving.
Understand about the "collection of herbs." I get overwhelmed when I look in my cabinet. My doctor took me off everything because my kidney tests came back a bit off. I can feel everything coming back now, which is a downer. But, hopefully things will get better, and I'll get back on what is needed.
And about "want my life back" - that hits home hard. I'm pulling for you, and thanks for the information.
Understand about the "collection of herbs." I get overwhelmed when I look in my cabinet. My doctor took me off everything because my kidney tests came back a bit off. I can feel everything coming back now, which is a downer. But, hopefully things will get better, and I'll get back on what is needed.
And about "want my life back" - that hits home hard. I'm pulling for you, and thanks for the information.
I forgot to mention I have also been using Kyolic (garlic) with an added supplement of probiotics. You should see the collection of herbs and oils and tinctures I have here. It's hard to keep up with everything. I am hitting this stuff with everything I can find. I want my life back!
I have a lot of reason for being excited. The ACA on the back of my hand seems to be going away. It's fading and feeling more and more like normal skin. I've been using the BioTox Lyme homeopathic remedy as well as Banderol and Teasel, plus added an herbal formula for adrenal support and liver cleansing last week. I definitely have more physical energy and less pain, too. I am still very much affected by weather changes, however. Rainy weather makes the fibromyalgia really difficult. But I'm going to keep chugging.
That's great to hear! Not the feeling bad part, but the aftermath.
I have started the Buhner Protocol, which includes a large number of supplements, but not the banderol or chlorella. Could you keep me posted on how things go? I'll be hoping for you.
Most opf my body is impacted by the ACA, or what seems to be ACA. I haven't lost any strength, just the loss of fat/collagen, headaches, fatigue. It became better on Bicillin IM, but has slowly gotten worse again. But today was the first day is a few weeks I haven't felt like sleeping between 3-6 p.m.
Hope all goes well.Look forward to hearing back on your progress.
I have started the Buhner Protocol, which includes a large number of supplements, but not the banderol or chlorella. Could you keep me posted on how things go? I'll be hoping for you.
Most opf my body is impacted by the ACA, or what seems to be ACA. I haven't lost any strength, just the loss of fat/collagen, headaches, fatigue. It became better on Bicillin IM, but has slowly gotten worse again. But today was the first day is a few weeks I haven't felt like sleeping between 3-6 p.m.
Hope all goes well.Look forward to hearing back on your progress.
I happened to stumble upon ACA recenlty while researching lyme. It was a major "aha!" moment because I have had this wrinkly patch of dry skin on the back of my hand for YEARS and never remembered injuring it or burning it. The thing never got better or worse, just stayed there dry and discolored, didn't itch, didn't grow. When I discovered the definition of ACA it all fell into place. Now I don't have to spend thousands of dollars on fancy blood work to see if I have lyme.
Last weekend I added a homeopathic remedy to the herbal lyme protocol I've been using (banderol, samento, chlorella, and vitamin D3). The results were startling. The homeopathic remedy is marketed by Dr. Theresa Dale as Lyme or Bio-Tox, and I used just five drops twice a day. Within hours I was deathly sick, headache, nausea, then vomiting, diarrhea, and sleeping for about 8 hours. For a little while I wasn't sure I would survive whatever it was, but now I know it was a "herx" from the die-off of the lyme critters. What really got my attention, because my right arm was in a cast from an accident, was that the ACA on my hand began to burn during that time, like someone was holding a hot iron on it!
The next day I was shocked to find how great I felt. It was as though I had knocked out so much lyme I felt almost normal again, and it's been a long, long time since I have felt that way. Today I started back on the Bio-tox again. I will keep an eye on the ACA as well as the other symptoms and reactions and share whatever I find. So far, this is really exciting. The last herx I had was a year ago using just banderol and samento, but I was kind of in a holding pattern without a lot of improvement since then. To have mobility back in my legs is really encouraging. I am walking more every day.
Last weekend I added a homeopathic remedy to the herbal lyme protocol I've been using (banderol, samento, chlorella, and vitamin D3). The results were startling. The homeopathic remedy is marketed by Dr. Theresa Dale as Lyme or Bio-Tox, and I used just five drops twice a day. Within hours I was deathly sick, headache, nausea, then vomiting, diarrhea, and sleeping for about 8 hours. For a little while I wasn't sure I would survive whatever it was, but now I know it was a "herx" from the die-off of the lyme critters. What really got my attention, because my right arm was in a cast from an accident, was that the ACA on my hand began to burn during that time, like someone was holding a hot iron on it!
The next day I was shocked to find how great I felt. It was as though I had knocked out so much lyme I felt almost normal again, and it's been a long, long time since I have felt that way. Today I started back on the Bio-tox again. I will keep an eye on the ACA as well as the other symptoms and reactions and share whatever I find. So far, this is really exciting. The last herx I had was a year ago using just banderol and samento, but I was kind of in a holding pattern without a lot of improvement since then. To have mobility back in my legs is really encouraging. I am walking more every day.
Thanks for the information. Do you have loss of fat under skin and atrophy of skin?
I am currently undergoing treatment at Sierra Integrative Medical Center in Reno, Nevada. I highly recommend this place, the doctors specialize in the holistic treatment of Lymes. I am also suffering from Lymes that is being expressed through my skin, but with the recent treatments I am healing and my skin is clearing up.
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