Welcome to MedHelp -- we are glad to help any way we can.
I see you are near Atlanta. Have you located a Lyme specialist near there, or have you seen one elsewhere? How far can you travel? With some data like that, we may be able to come up with some sources of help for you.
Do you know if your current MD a member of ILADS? Is he/she a dermatologist, or a Lyme specialist?
You are right, there is much ignorance about Lyme, but there are good people out there and we are happy to help you find someone who can help.
Hang on, and give us a bit of background on where you've been (which medical centers in which cities) and what kind of docs have treated you. We do NOT post MD's names here in the open, because of possible harassment by disbelieving medical boards etc., so for now, just a bit more history will help.
Will look forward to hearing back from you --
Hi, if I understand you correctly with my foggy Lyme brain, I do have that atrophied looking skin on certain areas of my body.
However my LLMD says mine is because I went from being a kick boxer to not being able to walk, then to do much of anything which caused that atrophy. Exercise may be able to fix my problem. Like Jackie said, we would need more info to better understand.
Did you contract Lyme in Europe? That seems to be the most common reference I've seen to the use of the acronym ACA.
And-----IMPORTANT----- have you been treated or are you currently being treated for Lyme disease?
From what I've read it IS possible to stop the progression. Long term doxycycline or penicillin is said to be the med of choice for ACA. That may stop the progression of it and perhaps reverse it a bit.
Have you seen a dermatologist for this? Some derms. will treat the 'condition' without needing to mention Lyme.
Thank you all. I am so frustrated because, it seems, very hard to find someone with this type problem with Lyme DIsease.
Bottom line is I have seen an LLMD in Tennessee. That doctor has been responsive and trying different things. Could not afford iv antibiotic suggested because insurance will only pay one months. I have been financially choked through all this, being self-employed. Have tried Rocehpin with azithromax, but had trouble on those meds and "circles" (erythema migrans?) kept forming, along with atrophy and some hair loss on head. He also has me taking naturals, like enzymes, microbial balancer, Enhanca repair, Nystatin, probiotic etc...
Then went to 400 mg of Doxy, but problems kept getting worse, so doctor has me off that now. I have sepnt at l;east 100 hours learning online (was a reporter for years) and am now putting colloidal silver on circles, taking one dose of it a day and taking enzymes with probiotic.
One thing that did concern me is my doctor did not know what I meant when I asked about ACA in an email a week or so ago. The doctor replied with a question mark (ACA?) Then said we should try iv meds, as I had mentioned I may have to try out of desperation.
The story is much longer as it all started in Oct. 2011 with something called Sweets Syndrome, which scared hell out of me. It can come iwth lukemia, especailly in men, or other infections. I was also on prednisone for months because of it, another concern.
Your help and time is very appreciated. I thank you for your kindness. Bythe way, I have been in touch with the georgia Lyme Disease Assoc., but no one has dealt with the skin deal here.
I am sorry for your suffering.
I have only been on oral abx for the same reason as you but have much improved. I have switched up meds a lot.
You need to be on a cyst busting medication too. For example I do a 2 week rotation of Flagyl that kills the cysts formations.
Also if you herx, that will make you feel worse but is a good thing because it proves you are killing the bugs.
Let us know if you have other questions.
"Interpretation: Oral doxycycline is as efficient as intravenous ceftriaxone (Rocephin) for the treatment of European adults with Lyme neuroborreliosis."
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.
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:(
I have heard good things about coconut oil. Amazing isn't it?
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.]
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?
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.
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.
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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.
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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.
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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.
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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.
22 Priem S, Burmester GR, Kamradt T, Wolbart K, Rittig MG, Krause A. Detection of Borrelia burgdorferi by polymerase chain reaction in synovial membrane, but not in synovial fluid from patients with persisting Lyme arthritis after antibiotic therapy. Ann Rheum Dis 1998;57:118–21.
23 Cimmino MA, Azzolini A, Tobia F, Pesce CM. Spirochetes in the spleen of a patient with chronic Lyme disease. Am J Clin Pathol 1989;91:95–7.
24 Preac-Mursic V, Weber K, Pfister HW, Wilske B, Gross B, Baumann A, Prokop J. Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis. Infection 1989;17:355–9.
25 Preac Mursic V, Marget W, Busch U, Pleterski Rigler D, Hagl S. Kill kinetics of Borrelia burgdorferi and bacterial findings in relation to the treatment of Lyme borreliosis. Infection 1996;24:9–16.
26 Pfister HW, Preac-Mursic V, Wilske B, Schielke E, Sorgel F, Einhaupl KMJ. Randomized comparison of ceftriaxone and cefotaxime in Lyme neuroborreliosis. J Infect Dis 1991;163:311–8.
27 Preac-Mursic V, Pfister HW, Spiegel H, Burk R, Wilske B, Reinhardt S, Bohmer R. First isolation of Borrelia burgdorferi from an iris biopsy. J Clin Neuroophthalmol 1993;13:155–61.
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32 Sigal LH, Patella SJ. Lyme arthritis as the incorrect diagnosis in pediatric and adolescent fibromyalgia. Pediatrics 1992;90:523–8.
33 Sox HC Jr. Using evidence to teach effective use of health interventions. Ann N Y Acad Sci 1993;703:245–9.
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37 Brown RL. Using covariance modeling for estimating reliability on scale with ordered polytomous variables. Education Psychol Measurement 1989;49:26–39.
38 Perides G; Tanner-Brown LM; Eskildsen MA; Klempner MS. Borrelia burgdorferi induces matrix metalloproteinases by neural cultures. J Neurosci Res 1999;58:779–790.
39 Perides G; Charness ME; Tanner LM; Peter O; Satz N; Steere AC; Klempner MS. Matrix metalloproteinases in the cerebrospinal fluid of patients with Lyme neuroborreliosis. J Infect Dis 1998;177:401–8.
40 Maloy AL; Black RD; Segrurola RJ Jr. Lyme disease complicated by the Jarisch-Herxheimer reaction. J Emerg Med 1998;16:437–8.
41 Strominger MB, Slamovitis TL, Herskovtiz S; Lipton RB. Transient worsening of optic neuropathy as a sequelae of the Jarisch-Herxheimer reaction in the treatment of Lyme disease. J Neuroopthalmol 1994;14:77–80.
42 Moore JA Jarisch-Herxheimer reaction in Lyme disease. Cutis 1987;39:397–8.
43 Amosova LI. An electron microscopic study of Borrelia in the body of the female ixodid tick Ixodes persulcatus. Parazitologia 2000;34:234–40.
44 Alban PS; Johnson PW; Nelson DR. Serum-starvation-induced changes in protein synthesis and morphology of Borrelia burgdorferi. Microbiology 2000;146 (Pt 1):119–27.
45 Bruck DK; Talbot ML; Cluss RG; Boothby JT. Ultrastructural characterization of the stages of spheroplast preparation of Borrelia burgdorferi. J Microbiol. Methods 1995;23:219–28.
46 Benach JL. Functional heterogeneity in the antibodies produced to Borrelia burgdorferi. Wiener Klinische Wochenschrift 1999;111:985–9.
47 Preac-Mursic V; Wanner G; Reinhardt S; Wilske B; Busch U; Marget W. Formation and cultivation of Borrelia burgdorferi spheroplast L-form variants. Infection 1996; 24:218–26.
48 Cluss RG; Goel AS; Rehm HL; Schoenecker JG; Boothby JT. Coordinate synthesis and turnover of heat shock proteins in Borrelia burgdorferi: degradation of DnaK during recovery from heat shock. Infect Immunity 1996;64:1736–43.
49 Kersten A; Poitschek C; Rauch S; Aberer E. Effects of penicillin, ceftriaxone, and doxycycline on the morphology of Borrelia burgdorferi. Antimicrob Agents Chemo1995;39:1127–33.
50 Aberer E; Koszik F; Silberer M. Why is chronic Lyme borreliosis chronic? Clin Infect Dis 1997;25(Suppl 1):S64–S70.
51 Aberer E; Kersten A; Klade H; Poitschek C; Jurecka W. Heterogeneity of Borrelia burgdorferi in the skin. Am J Dermatopathol 1996;18:571–9.
52 Angelov L; Dimova P; Berbencova W. Clinical and laboratory evidence of the importance of the tick D. marginatus as a vector of B. burgdorferi in some areas of sporadic Lyme disease in Bulgaria. Eur J Epidemiol 1996;12:499–502.
53 Schaller M; Neubert Ultrastructure of Borrelia burgdorferi after exposure to benzylpenicillin. Infection 1994 22:401–406.
54 Hulinska D; Bartak P; Hercogova J; Hancil J; Basta J; Schramlova J. Electron microscopy of Langerhans cells and Borrelia burgdorferi in Lyme disease patients. Zbl Bakt 1994;280:348–9.
55 Nanagara R; Duray PH; Schumacher HR. Jr. Ultrastructural demonstration of spirochetal antigens in synovial fluid and synovial membrane in chronic Lyme disease: possible factors contributing to persistence of organisms. Hum Pathol 1996;27:1025–34.
56 Hulinska D; Jirous J; Valesova M; Hercogova J. Ultrastructure of Borrelia burgdorferi in tissues of patients with Lyme disease. J Basic Microbiol 1989;29:73–83.
57 MacDonald AB. Concurrent neocortical borreliosis and Alzheimer's disease: Demonstration of a spirochetal cyst form. Ann NY Acad Sci 1988;539:468–70.
58 Brorson O; Brorson SH. Transformation of cystic forms of Borrelia burgdorferii to normal mobile spirochetes. Infection 1997;25:240–6.
59 Brorson O; Brorson. In vitro conversion of Borrelia burgdorferi to cystic forms in spinal fluid, and transformation to mobile spirochetes by incubation in BSK-H medium. Infection 1998;26:144–50.
60 Gruntar I, Malovrh T, Murgia R, Cinco M. Conversion of Borrelia garinii cystic forms to motile spirochetes in vivo. APMIS 2001;109:383–8.
61 Zajkowska JM; Hermanowska-Szpakowicz T; Pancewicz SA; Kondrusik M. [Selected aspects of immunopathogenesis in Lyme disease]. Pol Merkuriusz Lek 2000;9:579–83.
62 Zajkowska JM; Hermanowska-Szpakowicz T; Kondrusik M; Pancewicz SA. [Neurologic syndromes in Lyme disease]. Pol Merkuriusz Lek 2000;9:584–8.
63 Brorson O; Brorson. A rapid method for generating cystic forms of Borrelia burgdorferi, and their reversal to mobile spirochetes. APMIS 1998;106:1131–41.
64 Wolf V; Wecke J. Formation of multiple treponemes. Zbl Bakt, 1994 280:297–303.
65 Brorson O; Brorson. An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to metronidazole. APMIS 1999;107:566–76.
66 Ma Y, Sturrock A, Weis JJ. Intracellular localization of Borrelia burgdorferi within human endothelial cells. Infect Immun 1991;59:671–8.
67 Klempner MS, Noring R, Rogers RA. Invasion of human skin fibroblasts by the Lyme disease spirochete, Borrelia burgdorferi. J Infect Dis 1993;167:1074–81.
68 Dorward DW, Fischer ER, Brooks DM. Invasion and cytopathic killing of human lymphocytes by spirochetes causing Lyme disease. Clin Infect Dis 1997;25 (Suppl 1):S2–8.
69 Linder S, Heimerl C, Fingerle V, Aepfelbacher M, Wilske B. Coiling phagocytosis of Borrelia burgdorferi by primary human macrophages is controlled by CDC42Hs and Rac1 and involves recruitment of Wiskott-Aldrich syndrome protein and Arp2/3 complex. Infect Immun 2001;69:1739–46.
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Sorry again, I wouldn't dump this on you, but with your background in research and reporting, you can probably scan this pretty quickly and see what is of interest. If nothing else, it gives you names of those who have published on the topic.
Some of the publications are also quite old, but may be valuable nevertheless.
and PS, at least three of the authors of that article are still well known in the Lyme community as leading lights, which gives me some confidence in what they say.
And here's the intro to an article from 2002 that can be found in Medical Hypothoses (2003) 60(5), 742-759, located online at sciencedirect [dot] com, if it's of interest.
‘Lyme disease’: ancient engine of an unrecognized borreliosis pandemic?
By W. T. Harvey, P. Salvato
Diversified Medical Practices, Houston, Texas, USA
Summary: Unexpectedly we have found large numbers of chronically ill Borrelia burgdorferi PCR- and seropositive patients in Houston, Texas, a zoonotically ‘non-endemic’ area. In order to understand this finding prior
to sufficient data availability, we chose to examine critically currently accepted but troublesome ‘Lyme disease’ concepts. Our method was to analyze each foundation ‘Lyme disease’ premise within the context of available medical and veterinary literature, then to reconstruct the disease model consistent with the preponderance of that data. We find the present conceptualization of the illness seriously truncated, with a high likelihood of two distinct but connected forms of human B. burgdorferi infection. The yet-unrecognized form appears to have a broader clinical presentation, wider geographic distribution, and vastly greater prevalence. We conclude that ‘Lyme disease’ currently acknowledges only its zoonosis arm and is a limited conceptualization of a far more pervasive and unrecognized infection state that must be considered a global epidemic."
from Elsevier Science Ltd. 2003
Lymelight foundation is the other one Jackie.
Wow! Don't know you but you have to be incredibly caring people. That is getting so rare in this world. My first hope is whatever you are dealing with in the Lyme world, you are doing well, better, improving, etc... As a former college track and cross country coach and instructor, my goal is always to help others. That's why I also enjoyed reporting. Thank you for your time.
My LLMD is now recommmending we try iv Invanz. That is a new one to me. I know it is very expensive ($1,700 a month even in Canada. My insurance would pay first month, I believe.
Anyone aware of Invanz? Does it break up cysts? I really can't afford to wait much longer on something to try to correct this as skin is getting worse. Thanks again for all the information. You all are awesome!
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.
I haven't heard of Invanz ... a usual approach to cyst-busting is Flagyl, along with another antibiotic (not usually doxycycline) to kill the then-exposed bacteria. Your doc sounds like he's trying, and that's great. (But keep digging on your own.)
And ... Flagyl is cheap.
Keep us posted --- best wishes --
I don't see where Invanz is used for cyst-busting. But is IS used for "Complicated Skin and Skin Structure Infections" which may be why your doctor is suggesting it.
It's administered via IV or IM.
Invanz (Merck) generic=Ertapenem
I'd suggest you read the pdf that Merck has published (above) to acquaint yourself enough to ask the right questions of your doctor. (Yeah, those pdf's are difficult for a beginner, but since you say you have research capabilities it should be easier for you.)
Thanks for your help and all the information.
Very concerned about the iv and antibiotics. I've always been susceptable to problems with many different meds. I don't know how he figured it out with the tests he did, but an allergist said to me once, "I' would guesss you are hard to medicate." He was right.
That leadsto my nervousness about some of this, especially iv. On the other hand, I have to do something as this is getting worse. I'm normally pretty good about taking things in stride, but nervous about wwhat to do, which is causing stress, which....... Lyme Disease is like be cornered and not knowing which way to go to get out.
But I thought I read penicillin is good for late stage European Lyme if used with a cyst buster. I like my doctor and do not want him to hink I am always questioning his judgement, but there is a lot at stake here. Just not sure which way to go. If it wasn't so serious, it would be funny.
"I've always been susceptable to problems with many different meds."
I am too---- which taught me to take a sliver of a med instead of the rx'd dose. (But that doesn't work with Lyme abx usually.)
When pharmacogenetics become in general use then perhaps we can find out just what drugs we can safely take and at one dose.
"But I thought I read penicillin is good for late stage European Lyme if used with a cyst buster."
I used bicillin LA---- IM and no cyst-buster and achieved a very good remission that lasted for 3-4 years as long as I stayed on bicillin LA.