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.
I have ACA and actually posted about it months ago. I do not have the sunken spots that you speak of, but have a considerable amt of skin thinning (tissue paper thin on arms and hands). I have been on abx for over 4 months now and though most symptoms are improving skin and muscle atrophy has not gotten better. Now that my energy is ever so slightly back I plan on a VERY light exercise plan to regain lost muscle tissue and will see a dermatologist soon about skin atrophy. The ONLY thing I've noticed that makes a temporary difference with my skin, believe it or not, is rubbing cold-pressed coconut oil on it. You could try that in the meantime. Please keep us updated with any new info. There was another female here in the Lyme community who suffered from it too, but she hasn't posted in over 2 months:(
It's good that you are a researcher by inclination and experience -- that will do you well in this situation.
ILADS (International Lyme and Associated Diseases Society) is the main voluntary group for MDs who think bigger thoughts about Lyme disease and its co-infections than other docs -- there is a huge split in the medical community about Lyme and how to treat it. At the ILADS [dot] org website are Dr Burrascano's Treatment Guidelines, a rambling collection of forward-thinking about Lyme disease etc., but it may have some useful information for you on ACA.
By contrast, the Infectious Disease Society of America (IDSA) has a firm position that Lyme is not a particularly serious ailment and is easily cured, but anyone who finds their way to this website has already learned better. The problem with IDSA is that its approaches to diagnosis and treatment of Lyme are out of date, but those at the top of the IDSA refuse to acknowledge that. The IDSA guidelines for diagnosis and treatment of Lyme are, in the opinion of ILADS, out of date, and willfully so. Your current doc may be hedging his bets in his approaches to treatment, because MDs who go beyond the IDSA guidelines risk trouble with the local and state medical boards.
In the treatment of Lyme (and one would think it applies to ACA as well, but I don't know), doxycycline is the usual first line treatment immediately after infection with Lyme, but very quickly after infection, the bacteria create biofilms in the body where the doxy and the immune system cannot reach. Thus doxy is largely ineffective, and other meds are called for.
Whether ACA has additional aspects to it (beyond 'regular' Lyme), I do not know, but you may wish to get a second opinion from another doc practicing in the Lyme field. Some docs try to muddle through, but don't have the firepower or the resources to be up to date on current Lyme diagnosis and treatment.
Any doc can call themselves an LLMD, because there is no test to pass to be one. Your Tenn. doc may be doing the best he can, but I'd move on to try other resources. If you email to
contact [at] ILADS [org]
and tell them where you are (near what big city) and how far you can travel, they can send you names of ILADS members. No guarantee these members are cutting-edge, but it's data to work from at least. Tell them you are also willing to consider surrounding states, or just keep going back to them will further requests -- I'm not sure how the operate.
Also try the Ga Lyme disease assn site again and poke around for docs there -- you might call some of the docs listed there (or that the assn can provide you) and ask if they have experience with ACA -- it will save you a drive. Also try similar associations in Tenn. and surrounding states, just in case. Most of these associations are homegrown, so the results can be variable, but the internet is definitely your friend.
Also, if you can find the name of a doc online who is knowledgeable about ACA, that doc, however far away, may be able to lead you to a doc more local for you. Specialists like that often know who else is up to speed in the field.
Keep us posted, and we'll keep brainstorming -- best wishes -- and hang on!
[And by the way, the quote above that "oral doxycycline is as efficient as intravenous ceftriaxone (Rocephin) for the treatment of European adults with Lyme neuroborreliosis" may not be accurate, based on what I read -- so-called mainstream medicine still clings to the idea that doxy is effective at all stages and in all manifestations of Lyme, which is also the opinion of the IDSA -- but that is not what I understand to be the position of ILADS, for specific reasons we can get into another time if it's helpful.]
ILADS (International Lyme and Associated Diseases Society) is the main voluntary group for MDs who think bigger thoughts about Lyme disease and its co-infections than other docs -- there is a huge split in the medical community about Lyme and how to treat it. At the ILADS [dot] org website are Dr Burrascano's Treatment Guidelines, a rambling collection of forward-thinking about Lyme disease etc., but it may have some useful information for you on ACA.
By contrast, the Infectious Disease Society of America (IDSA) has a firm position that Lyme is not a particularly serious ailment and is easily cured, but anyone who finds their way to this website has already learned better. The problem with IDSA is that its approaches to diagnosis and treatment of Lyme are out of date, but those at the top of the IDSA refuse to acknowledge that. The IDSA guidelines for diagnosis and treatment of Lyme are, in the opinion of ILADS, out of date, and willfully so. Your current doc may be hedging his bets in his approaches to treatment, because MDs who go beyond the IDSA guidelines risk trouble with the local and state medical boards.
In the treatment of Lyme (and one would think it applies to ACA as well, but I don't know), doxycycline is the usual first line treatment immediately after infection with Lyme, but very quickly after infection, the bacteria create biofilms in the body where the doxy and the immune system cannot reach. Thus doxy is largely ineffective, and other meds are called for.
Whether ACA has additional aspects to it (beyond 'regular' Lyme), I do not know, but you may wish to get a second opinion from another doc practicing in the Lyme field. Some docs try to muddle through, but don't have the firepower or the resources to be up to date on current Lyme diagnosis and treatment.
Any doc can call themselves an LLMD, because there is no test to pass to be one. Your Tenn. doc may be doing the best he can, but I'd move on to try other resources. If you email to
contact [at] ILADS [org]
and tell them where you are (near what big city) and how far you can travel, they can send you names of ILADS members. No guarantee these members are cutting-edge, but it's data to work from at least. Tell them you are also willing to consider surrounding states, or just keep going back to them will further requests -- I'm not sure how the operate.
Also try the Ga Lyme disease assn site again and poke around for docs there -- you might call some of the docs listed there (or that the assn can provide you) and ask if they have experience with ACA -- it will save you a drive. Also try similar associations in Tenn. and surrounding states, just in case. Most of these associations are homegrown, so the results can be variable, but the internet is definitely your friend.
Also, if you can find the name of a doc online who is knowledgeable about ACA, that doc, however far away, may be able to lead you to a doc more local for you. Specialists like that often know who else is up to speed in the field.
Keep us posted, and we'll keep brainstorming -- best wishes -- and hang on!
[And by the way, the quote above that "oral doxycycline is as efficient as intravenous ceftriaxone (Rocephin) for the treatment of European adults with Lyme neuroborreliosis" may not be accurate, based on what I read -- so-called mainstream medicine still clings to the idea that doxy is effective at all stages and in all manifestations of Lyme, which is also the opinion of the IDSA -- but that is not what I understand to be the position of ILADS, for specific reasons we can get into another time if it's helpful.]
And PS there are groups that can help Lyme patients financially with diagnosis and treatment -- I don't have a list of them, but others here may be able to chime in.
LymeTAP is one, I believe.
Anybody else got ideas?
LymeTAP is one, I believe.
Anybody else got ideas?
Scrimenti R. Erythema chronicum migrans. Arch Derm.1970;102:104–5
This is a now-40+ year old article on ACA (called here ECA), which may be of interest if you can find it on the net, but also paste that entire line into your browser and it will take you to 189 (!) results that reference that paper. Those results may in turn lead you to other MDs, researchers, medical centers, and other possibilities for diagnosis and treatment.
This is a now-40+ year old article on ACA (called here ECA), which may be of interest if you can find it on the net, but also paste that entire line into your browser and it will take you to 189 (!) results that reference that paper. Those results may in turn lead you to other MDs, researchers, medical centers, and other possibilities for diagnosis and treatment.
Here are ALL the citations from the article mentioned to you in a private message (PM). Anything written my Wormser and/or Steere can be taken with a large lump of salt -- they are well known Lyme-deniers, so if you read them, do so with a skeptical eye.
Sorry to dump this on you, but gotta run. Some of these may not be on point, but as a professional researcher, your eye will tell you much from a quick scan.
[part 1 -- remainder in following message(s)]
1 Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001;345:85–92.
2 Scrimenti R. Erythema chronicum migrans. Arch Derm.1970;102:104–5.
3 Hellerstrom S. Erythema chronica migrans. Afzelia with meningitis. Southern Med J 1950;43:330–5.
4 Murray P. The widening circle. New York: St. Martin's Press, 1996.
5 Steere, A Malawista SE, Hardin JA, et al. Erythema chronica migrans and Lyme arthritis. The enlarging clinical spectrum. Ann Intern Med 1977;86:685–98.
6 Burgdorfer W, Barbour AG, Hayes SF, et al. Lyme disease: a tick-borne spirochetosis? Science 1982;216:1317–19.
7 Lawrence C, Lipton RB, Lowy FD, Coyle PK Seronegative chronic relapsing neuroborreliosis. Eur Neurol 1995;35:113–7.
8 Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft ** Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010–5.
9 Mouritsen CL, Wittwer CT, Litwin CM, Yang L, Weis JJ, Martins TB, Jaskowski TD, Hill HR Polymerase chain reaction detection of Lyme disease: correlation with clinical manifestations and serologic responses.Am J Clin Pathol 1996;105:647–54.
10 Paul A. [Arthritis, headache, facial paralysis. Despite negative laboratory tests Borrelia can still be the cause]. MMW Fortschr. Med 2001;143:17.
11 Pikelj F, Strle F, Mozina M. Seronegative Lyme disease and transitory atrioventricular block. Ann Intern Med 1989;111:90.
12 Fraser DD, Kong LI, Miller FW. Molecular detection of persistent Borrelia burgdorferi in a man with dermatomyositis. Clin Exp Rheumatol 1992;10:387–90.
13 Gallivan GJ, Barker IK, Artsob H, Magnarelli LA, Robinson JT, Voigt. DR Serologic survey for antibodies to Borrelia burgdorferi in white-tailed deer in Ontario. J Wildl Dis 1998;34:411–4.
14 Pfister HW, Preac-Mursic V, Wilske B, Einhaupl KM, Weinberger K. Latent Lyme neuroborreliosis: presence of Borrelia burgdorferi in the cerebrospinal fluid without concurrent inflammatory signs. Neurology 1989;39:1118–20.
15 Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft ** Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010–5.
16 Cadavid D, O'Neill T, Schaefer H, Pachner AR. Localization of Borrelia burgdorferi in the nervous system and other organs in a nonhuman primate model of Lyme disease. Lab Invest 2000;80:1043–54.
17 Montgomery RR, Nathanson MH, Malawista SE. The fate of Borrelia burgdorferi, the agent for Lyme disease, in mouse macrophages. Destruction, survival, recovery. J Immunol 1993;150:909–15
18 Straubinger RK; Summers BA; Chang YF; Appel MJ. Persistence of Borrelia burgdorferi in experimentally infected dogs after antibiotic treatment. J Clin Microbiol, 1997, 35: 111–6.
20 Nocton J J; Dressler F; Rutledge B J; Rys P N; Persing D H; Steere A C. Detection of Borrelia burgdorferi DNA by polymerase chain reaction in synovial fluid from patients with Lyme arthritis N Engl J Med 1994; 330:229–34.
21 Bayer M E; Zhang L; Bayer M H. Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases. Infection. 1996;24:347–53.
Sorry to dump this on you, but gotta run. Some of these may not be on point, but as a professional researcher, your eye will tell you much from a quick scan.
[part 1 -- remainder in following message(s)]
1 Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001;345:85–92.
2 Scrimenti R. Erythema chronicum migrans. Arch Derm.1970;102:104–5.
3 Hellerstrom S. Erythema chronica migrans. Afzelia with meningitis. Southern Med J 1950;43:330–5.
4 Murray P. The widening circle. New York: St. Martin's Press, 1996.
5 Steere, A Malawista SE, Hardin JA, et al. Erythema chronica migrans and Lyme arthritis. The enlarging clinical spectrum. Ann Intern Med 1977;86:685–98.
6 Burgdorfer W, Barbour AG, Hayes SF, et al. Lyme disease: a tick-borne spirochetosis? Science 1982;216:1317–19.
7 Lawrence C, Lipton RB, Lowy FD, Coyle PK Seronegative chronic relapsing neuroborreliosis. Eur Neurol 1995;35:113–7.
8 Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft ** Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010–5.
9 Mouritsen CL, Wittwer CT, Litwin CM, Yang L, Weis JJ, Martins TB, Jaskowski TD, Hill HR Polymerase chain reaction detection of Lyme disease: correlation with clinical manifestations and serologic responses.Am J Clin Pathol 1996;105:647–54.
10 Paul A. [Arthritis, headache, facial paralysis. Despite negative laboratory tests Borrelia can still be the cause]. MMW Fortschr. Med 2001;143:17.
11 Pikelj F, Strle F, Mozina M. Seronegative Lyme disease and transitory atrioventricular block. Ann Intern Med 1989;111:90.
12 Fraser DD, Kong LI, Miller FW. Molecular detection of persistent Borrelia burgdorferi in a man with dermatomyositis. Clin Exp Rheumatol 1992;10:387–90.
13 Gallivan GJ, Barker IK, Artsob H, Magnarelli LA, Robinson JT, Voigt. DR Serologic survey for antibodies to Borrelia burgdorferi in white-tailed deer in Ontario. J Wildl Dis 1998;34:411–4.
14 Pfister HW, Preac-Mursic V, Wilske B, Einhaupl KM, Weinberger K. Latent Lyme neuroborreliosis: presence of Borrelia burgdorferi in the cerebrospinal fluid without concurrent inflammatory signs. Neurology 1989;39:1118–20.
15 Coyle PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL, Luft ** Detection of Borrelia burgdorferi-specific antigen in antibody-negative cerebrospinal fluid in neurologic Lyme disease. Neurology 1995;45:2010–5.
16 Cadavid D, O'Neill T, Schaefer H, Pachner AR. Localization of Borrelia burgdorferi in the nervous system and other organs in a nonhuman primate model of Lyme disease. Lab Invest 2000;80:1043–54.
17 Montgomery RR, Nathanson MH, Malawista SE. The fate of Borrelia burgdorferi, the agent for Lyme disease, in mouse macrophages. Destruction, survival, recovery. J Immunol 1993;150:909–15
18 Straubinger RK; Summers BA; Chang YF; Appel MJ. Persistence of Borrelia burgdorferi in experimentally infected dogs after antibiotic treatment. J Clin Microbiol, 1997, 35: 111–6.
20 Nocton J J; Dressler F; Rutledge B J; Rys P N; Persing D H; Steere A C. Detection of Borrelia burgdorferi DNA by polymerase chain reaction in synovial fluid from patients with Lyme arthritis N Engl J Med 1994; 330:229–34.
21 Bayer M E; Zhang L; Bayer M H. Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases. Infection. 1996;24:347–53.
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