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.
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.
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.
"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:(
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.]
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.
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.
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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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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
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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.
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33 Sox HC Jr. Using evidence to teach effective use of health interventions. Ann N Y Acad Sci 1993;703:245–9.
34 Dotevall L, Hagberg L. Penetration of doxycycline into cerebrospinal fluid in patients treated for suspected Lyme neuroborreliosis. Antimicrob Agents Chemother 1989;33:1078–80.
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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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71 Georgilis K, Peacocke M, Klempner MS. Fibroblasts protect the Lyme disease spirochete, Borrelia burgdorferi, from ceftriaxone in vitro. J Infect Dis 1992;166:440–4.
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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 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."
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!
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.)
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.)
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.
" I'm normally pretty good about taking things in stride, but nervous about what to do, which is causing stress, which....... Lyme Disease is like be cornered and not knowing which way to go to get out."
That is a direct side effect of Lyme -- it messes with the endocrine system, and thus mood and the ability to cope. Can be quite disorienting, but once the Lyme is treated, your ability to cope will return.
Mantra: "It's not me; it's the Lyme. It's not me; it's the Lyme." The real you is still there and will return.
PS I don't think it was mentioned above, but Lyme uses up magnesium in the body, which on top of being anxious about being ill, causes additional 'metabolic' anxiety -- a direct effect of magnesium deficiency. Can give you the short download on that if it helps.
Have had my magnesium checked numerous times. The rheumotologist I see here in Atalnat is really up on Lyme Disease and dsoes a lot of the right things.
My LLMD is now considering IV Vancomycin because of skin. The doctor also wants me to be cheecked for possible allergies to keflex, Rocephin, cephlos after I mentioned my problem in the past with Keflex. He has really been good trying to think out of the box, but I did not like what I read about Vancomycin. Lots of potential serious side effects. I already have had tinnitus for years. Will talk with him Friday with phone consultation.
Is your Lyme Disease in remission, from what I read? If so, happy for you and wondering what is was like for you and how long it took. It is my hope to get well and help others when the time comes. With the skin getting worse, it's like being on a timer.
Glad you have a good doc -- he's an exception to the rule that rheumies (and ID docs and neuros) are usually non-believers. That's great!
About the vancomycin, I just did a search and did not find terribly awful things about it -- tho it is one of the big guns in the antibiotic world. I seem to remember some years ago there was consternation that vancomycin was being sold rather casually in Asia for ailments that would have responded to lesser abx, thus depleting the arsenal of meds available when nothing else would work. Thus its use has been discouraged, in order to keep it effective for when truly needed.
Here is an abstract of a 1996 presentation by Dr Burrascano at a conference held by the [non profit] Lyme Disease Network. Are you familiar with Burrascano? His 'guidelines' are posted on the ILADS website. One of the early heroes of the Lyme wars.
Title: Use of Vancomycin in Chronic Persistent Lyme Disease
Authors: Burrascano JJ
Conference: 9th Annual International Scientific Conference on Lyme Disease & Other Tick-Borne Disorders, Westin Copley Plaza Hotel, Boston, MA, April 19-20, 1996
Presenter: Joseph Burrascano, Jr., M.D., Southampton Hospital
"Because symptoms of Lyme disease that persist despite aggressive antibiotic therapy have been related to persistent infection, an expanded search for newer antibiotic regimens was undertaken.
"Vancomycin has been shown to be effective in killing Borrelia burgdorferi in vitro, and a case report demonstrated the efficacy of this agent in a patient with ongoing symptoms unresponsive to other treatments. An expansion of that trial is now reported.
"Twenty one patients with severe chronic Lyme disease unresponsive to more conventionally used oral and parenteral antibiotics were prescribed standard doses of vancomycin using a pulsed dosing schedule. Two patients had to drop out due to allergic reactions. Of the nineteen remaining patients, eighteen had a favorable response; in eleven the response was significantly greater than with any other agent previously used. In two such patients there was no apparent cure. None of these nineteen patients had any treatment related reactions, signs of nephro- or ototoxicity, or significant superinfections.
"I conclude that vancomycin may be a safe and effective alternative for treating patients with severe, resistant Lyme disease when other agents have failed." Unique ID: 96LDF026
Sounds pretty promising and not too scary. The worst side effect seems to be allergic reaction, and that is not common. I wonder if they can run an allergy test on you for the vancomycin?
About me, yes, I'm quite well now. I think I got a mild case of Lyme travelling back East almost ten years ago, and just sort of dragged around for a while thinking I was overdoing it at work, knowing something was wrong but not having the brainpower to figure it out. Around that same time, we were in England roaming around Stonehenge and other grassy places, and I was suddenly worse -- confused, foggy-brained, just not well. Like the flu, but no gastro effects.
That went on for a year or more, while I dragged around through 20 docs with no diagnosis. The 20th one (and the 3rd endocrinologist I saw) ran a Western blot test, which amazingly came back positive, since as long as I had been ill, those tests often come back negative because the immune system has given up, assuming its job is done and the bugz are all dead, and with no immune system reaction, the tests show negative.
That dear doc said so gently (this is an old tale here -- I've told it more than a few times), "Oh, you *couldn't possibly* have Lyme" -- despite the positive test -- "because" -- and her voice dropped to a whisper -- "I have patients with Lyme, and they are all ... near ... death."
It still boggles my mind to think of those poor neglected patients. I took those test results and found a Lyme specialist -- one of the well known ones happens to be a short drive from where we live. I tested positive on W.blot (and I think also on ELISA), and given how long I had been ill, the doc was quite impressed that my immune system was still up and fighting.
Based on symptoms, I was also tested for babesiosis and was positive. Babesia was treated first, then the Lyme. I had zero trouble with the meds (and I'm usually a real lightweight), but did have trouble with the yeast-based probiotics the LLMD insisted on during long term abx treatment. It took a while for that systemic fungal infection to be diagnosed and treated, but once it was done, I was good to go. It took a few years to really get back to full-force, obnoxious ole me -- just like any major illness -- but I feel really good now. Like the preLyme me. Lyme is a wearing ailment, and dealing the fungal infection too really took a lot out of me, so without that detour I might have sprung back earlier.
(As an aside, the reason the doc insisted on yeast-based probiotics is that the bacterial probiotics like acidophilus are killed by ... yes, the antibiotics that also kill the Lyme bacteria. The yeast-based probiotics like Florastor [generic: Saccharomyces boulardii] can be taken at any time, including with the antibiotics, but it is necessary when taking [bacterial] acidophilus to put a couple hours distance from the antibiotics so the antibiotics don't also kill the acidophilus. The Lyme doc probably had figured that the foggy brain that comes with Lyme would make it difficult for patients to handle the delicate timing to separate acidophilus from antibiotics by several hours, several times a day. Good theory, but I am yeast-susceptible, as some people are ... tho my LLMD said he had never seen that happen before with Florastor. I *am* special!)
So yeah, the road can be bumpy, but hang on and go for it -- it's definitely worth doing. My only complaint now is that I came out of Lymelands just after the economy tanked a couple of years ago, and that's a real drag after being marginally employed for a long time. With luck, you'll come out of your Lyme haze just as the economy comes roaring back! (Gotta think positive.)
Sorry to run on here. Lyme is a bumpy road for nearly everyone, for various reasons, but it's so satisfying to beat it. I say: Go for it! Let us know how we can help.
PS You say above: "I like my doctor and do not want him to think I am always questioning his judgement ..."
That's fair. I often preface my questioning with "I have some questions I need help with, and your answers will help put my mind at ease. I'll try to keep it short." Then go for it, short OR long. The doc should figure out quickly that you're not a whiner, but instead a conscientious patient.
The few times I have failed to push back at a doc, I regretted it big time. Like when they kept sending me away AFTER my appendix ruptured (three different hospitals including an overnight stay). I nearly died in that little adventure; makes me more persistent now.
Lesson learned: You are your own best advocate and guardian. Follow your instincts. If you know something is wrong, persist. Docs learn early that there are lot of whiners in the world, and when they meet a very ill non-whiner, they too often still proceed on the whiner-scale, assuming you will push back. When you are polite and decide to believe that they are right, that you are not really sick, they assume they really are right. Don't go there. Only you know how you are feeling. Trust yourself.
Vancomycin has many problems associated with it. If your doctor is considering using you should talk to him about your concerns.
For one thing---- IV Vanco is administered twice a day vs. some other IV meds. That may not be a problem for you.
You might want to look at patient experiences in other forums---- ones where there are many many people who have actually used it and their opinion of it. Of course those are just patient reports but I've learned the hard way to never ignore a personal testimony by someone who's 'been there done that'. It depends on who is saying it.
There are also reports of it being effective .
You will have to read more opinions than just mine to to make your mind up. I've never taken it so I can't tell you my experience. Can't begin to tell you how many drugs were considered ''very well accepted' that knocked me off my feet!!!
But because of your skin problems you have a slightly different path to go.
Thanks, Cave 76. I did read about the major probelm that can take place with the kidneys and a few other items. Having a test done to see if I'm allergic to penicillin, which could tell something about taking other iv drugs instead. I've read bafzelli (spelling?) responsilke for ACA responds well to Rocephin. Would like to try it if I don't react like I did with Keflex years ago.
Damned if you do, damned if you don't. Always had probelms with meds. Just have to see hwo it plays out.
For others who might be interested, here's a clip from MicrobeWiki about the [less common] B. afzelli branch of the Lyme family:
"B. afzelii itself causes a distinct skin infection known as acrodermatitis chronica atrophicans (ACA). ACA is seen in the late stage of [the Lyme infection] and can be diagnosed as progressive, fibrosing skin process due to continuing infection of the bacterium.
"It is followed by an inflammatory stage with bluish red discoloration and cutaneous swelling, often seen with recurring events even a year after first notice. ..."
If it proceesed past the cutaneous swelling phase, it leads to atrophic skin, because of a loss of fat or collagen in the dermis. It sneaks up on you. Looking back, I saw signs of this for years, but it was so slow atthe time, I just didn't think anything about it.
Good luck having someone recognize it. Doctors will tell you "We all age" or "Sun damaged skin." I'm talking about doctors at Emory, the Mayo Clinic, and many others here in Atlanta. If you try to explain how good your skin was before all the atrophy (I'm half Armenian and always had good skin), you may have the suggestion you seek "therapy or coulseling." As in mental.
My hope is to stop the progression and hope some of the damage can be reversed. I've read both it can be to some extent, and it can't.
I've noticed there is little agreement in many areas concerning Lyme Disease and its impact. This forum keeps me sane because you all have been there one way or another.
Curious if you've lost a lot of weight as well. That is always my docs excuse for my ACA. Also, my ACA was very sudden. Within a month my skin went from normal to thin, wrinkly, loose, ashy, and almost gray looking. My husband has caught me looking at myself in the mirror with tears in my eyes dozens of times. I look noticeably aged and ill.
Like Leilajax, When I first go very sick from the lyme, I had lost 40lbs in one month which caused the skin to be like that. Then when I became hypothyroid, I gained the weight back but now lost it again and my skin is like that again.
My dodctor at the time never said I had ACA but it wasnt an LLMD.
I feel like I look aged and have cried too. I cry a lot from the lyme and memory issues alone and then add all the side effects, like not walking for a while and weakness in my arms to open the fridge.
I am glad we keep you sane because we have all experienced different problems too and we understand and are here for you.
If you answered my question about where you contracted Lyme I may have missed it so please refresh my memory.
Have you ever traveled outside the U.S, Europe in particular?
Do you remember a tick bite--- at all? Anywhere?
ACA is usually associated with infections contracted in Europe but there may be some evidence that ACA could follow ECM (erythema chronicum migrans or bulls-eye rash). Again, nothing is set in stone in science.
Eur J Dermatol. 2004 Sep-Oct;14(5):296-309.
Dermatological manifestations of Lyme borreliosis.
Department of Dermatology, Medical University of Graz, Auenbruggerplatz 8, A-8036 Graz, Austria. firstname.lastname@example.org
Lyme borreliosis is a multisystem infectious disease caused by the tick-transmitted spirochete Borrelia burgdorferi sensu lato. About 80%
of all Lyme borreliosis cases represent skin manifestations (dermatoborrelioses). The three characteristic dermatoborrelioses are erythema migrans, borrelial lymphocytoma, and acrodermatitis chronica atrophicans, which occur in different stages of the disease. Erythema
migrans is the hallmark of early Lyme borreliosis, whereas acrodermatitis chronica atrophicans is the characteristic manifestation of late
Lyme borreliosis. Several spirochetal factors (e.g. infection with different genospecies, co-infection with other tick-transmitted pathogens)
as well as host factors (e.g. cytokine patterns at the site of infection) influence the course of the disease.
Diagnosis in the early stage of Lyme borreliosis relies on the clinical picture, whereas serological, molecular, microbiological, and histopathological findings are important adjuncts in the diagnosis of later stages of the infection. Antibiotic treatment is necessary for all stages and manifestations of Lyme borreliosis.
Doxycycline is the antibiotic of choice for most patients with dermatoborrelioses.
Even though ACA is a late manifestation of dermaborreliosis doxy is recommended by many doctors. However, there are always other opinions by doctors just as qualified that say that a third generation cephalosporin is the drug of choice.
Some authors have suggested that ACA may be adequately
treated with oral therapies such as doxycycline. In our opinion, ACA should be viewed instead as »the tip of the iceberg« in chronic borreliosis and one should reckon with additional lesions in less accessible connective tissue structures.Thus we prefer systemic therapy with third generation cephalosporins (cefotaxime 2 x 3 g/20 days or ceftriaxone 1 x 4 g/20 days)."
[cefotaxime = Claforan ceftriaxone = Rocephin
I haven't heard much about Claforan/cefotaxime in the past few years. I would have to research to find out why it's no longer popular.
"After borrelial infection, it takes several years for the development of acrodermatitis chronica atrophicans (at the
earliest after two to three years, or even decades after infection).The disease course is characterized by an initially
edematous inflammatory stage, in which the epidermis
remains intact while the dermis becomes swollen and
inflamed.The skin is blue-red and the borders usually
merge. Surrounding the vessels there is a lymphocytic infiltrate with abundant plasma cells which often extend
into the subcutis. As a result of chronic inflammation,
collagen degeneration occurs with loss of elastic fibers and
thus ultimately a “cigarette paper-like” atrophy of the skin "
ACA is usually found only in patients with Borrelia Afzelli, which is mostly found in Central and Eastern Europe. I don't know much about it so I don't know that I have anything new to offer. I thought I'd mention my experience with Bicillin, though.
I believe I have an Australia version of Borrelia Garinii, common in Western and Central Europe, and I did well on Bicillin LA shots. I have heard someone theorize that European species are more likely to respond to Bicillin.
In the U.S., the prefilled syringes cost about $650 for 10 (which was a month's worth for me), which is a fraction of the cost of IV meds. I didn't mind the shots (only after I figured out to ice first and hot pack after) and preferred a shot every 3 days to a PICC line and doing IV transfusions. Rocephin is usually the 1st choice parenteral (IV or shot) drug, but Bicillin is worth looking into for people who can't take Rocephin or can't afford the cost of it. But it doesn't work for everyone. You won't know until you try it.
From what I've read, you can stop the progression of ACA with proper treatment. But, treatment doesn't reverse permanent damage to tissues from long term or severe infection. It sounds like you need to do whatever it takes to get some heavy duty treatment to give your skin a chance to heal.
I believe you mentioned taking steroids, and that would certainly have allowed a Lyme infection to get worse. Steroids and other immune suppressants are usually a disaster for Lyme patients.
You might be able to file some kind of appeal with your insurance company on their limit of one month of treatment by claiming that you have b. afzellii (evidenced by your ACA), the Eastern European version, and the justification for only giving 1 month of IV meds in the U.S. is based on the assumption of New England acquired Lyme Disease. You have a different species of Borrelia. You should be able to argue that much less is known about your condition and that you should be treated until your very serious and potentially life threatening skin condition resolves. You can even throw in the steroids issue saying that no one knows how much more difficult it is to eradicate b. afzellii after steroids.
In some states, laws require an insurance company to pay for treatment that a physician says is necessary to treat the patient. The medical field knows very well that some people are more difficult to treat than others, and that different patients respond differently to various treatments. I know CA has this law, and some insurance companies have been ordered to cover long term Lyme treatment by a state regulatory committee that governs disputes between patients and companies. I dont' know if your state has such a law or committee, but it might be worth looking into. And you'd also need a doctor willing to keep treating you until your symptoms resolve. It sounds like your doctor might be willing to do this.
Hang in there! Keep pressing forward to get the treatment you need! It sounds like you're doing a good job of being your own best advocate!
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.
"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.
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."
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:
"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 found the methylation supplements that we with that gene mutation are supposed to take:
mthfr a1298c is all I have. *THORNE RESEARCH - 5-MTHF (5-Methyltetrahydrofolate) - 1mg 60's and Jarrow Formulas Methyl-B12, 1000mcg, 100 Lozenges* is best for this mutation.
They are available on amazon (amongst dozens of other places). There is a bigger, more involved/active Lyme group on FB that I just joined and the admin helped me find the answers to my mutation as he had it, too. He said methylation truly improved his adrenals, detox/liver, and ability for the abx to do their magic. He was doing abx protocol for over a year, but it wasn't until methylation that he started seeing real benefits. Just thought I'd throw that at ya;).
I am having a particularly horrible couple of weeks after bragging that I was seeing improvement to you. Should've knocked on wood;).
Thinking of you!
Somebody might want to start a new thread about the methylation/gene mututation and post information there about what the issue is, what the symptoms are, how it's tested for, and about leila's information above.
Murph, I totally meant the above post to be addressed to you and not Rico (not that I don't want to send Rico a hug too, but the rest of my message pertained to your last comment) as I accidentally did. Sorry! Did I mention I'm having a bad couple of weeks? LOL, jeez!
Good comments to read this morning. Every time I come ot this site, I learn more from all of you. Deeply appreciated.
leliajax - I was wonderning what antibiotics you are taking and if any supplements. Though it's hard to find information about effective treatment for LATE stage ACA, I read where IV Rocephin is suggested when skin issues are involved. I once posted I had taken Rocephin, but I meant Rifampin. If my allergy tests tomorrow show I am not allergic to penicillin, I will soon begin Rocehpin IV. Dreading it but know it's part of the process.
And sorry about your bad days. Have learned mine are worse when my kids aren't here. Will also be curious abou the Methylation mentioned. More we know, the more we may find out helps.
One more things I've been meaning to mewntion. I've bene putting colloidal silver on areas of my skin where the cricles I mentioned take place before atrophy. My hope is it will kill whatever bacteria may be causing it. Maybe someone can jump in and tell me if I'm an idiot for doing so. Have read it can turn you blue, then read you would have to take so much of less than pharmicutical garde it is not possible to turn blue.
So far I am not blue, except for the mental kind brought on by all this from time to time.
Colloidal silver probably won''t cause you any problems when just applied to the skin. (See caveats below) Taken internally or via IV----- another ball of wax, although I do know people who did and had no problems with it---- turning blue or otherwise. :)
I believe that ACA is a systemic disease and it's been in your system for a long time. The bacteria has been in your system for a long time. Applying it to your skin can be considered an experiment----- and you may be able to write an article about how CS took away the skin problems of ACA. Never say never.
The CS controversy for Lyme (use it or don't use it) has been around for a long time. Some of the confusion exists because people read how CS would kill spirochetes----- upon contact and in a petri dish! It's a good thing to use for surfaces. But there will be no spirochetes on your skin.
I won't take CS internally. My personal decision. I also won't put it on my skin-----There's just enough evidence that using a CS cream on skin could produce a blue stain to make me hinky about it.
Murph, I've been on doxy (apparently a low dose) for almost 5 months, plaquenil for almost 3 months, and bactrim and azith for about 2 months. I was just adamantly told yesterday, though, to switch to another LLMD ASAP bc with the symptoms I display I am not being treated with the right abx or strong enough doses. Who knows, though? I mean aren't we all really going on different treatment plans anyway? Why is everything so darn complicated? Ugh! Sorry for my little rant. This getting a second opinion LLMD is fresh on my nerves. I should just be very grateful that I live in an area where LLMD's aren't that hard to come by.
Definitely go with the IV rocephin. I've heard great responses to the treatment. I pray that it goes well for you:). Please keep us/me updated! I'm actually quite excited for you:)
Have taken a break from thinking about all this, but now my LLMD has decided to go ahead with a new treatment plan.
He is prescribing clindamycin IV along with Tindimax. He also is including Transfer Fact Lym Plus and continuing with enzymes and Innate, a probiotic.
Of course, I read some nasty stuff about clindamycin, and probably should have just stayed off the infromation. Now I'm concerned about the major stomach issues people report about clindamycin.
ALong with that, the LLMD is concerned now instead of having b.afzelii, I have Lyme Disease, which has caused an auto immune reaction causing lipodystrophy. I have an appointment with Cleveland Clinic next week in rheumatology and an internest, which I was going to cancel because of $, but now I'm not sure after what he said.
"ALong with that, the LLMD is concerned now instead of having b.afzelii, I have Lyme Disease,"
Lyme and B.afzeli are in the same genus. Same but different. :) (Antigenic variety)
B. afzeli has the skin problems that Lyme doesn't (usually) and will probably be treated someone what differently.
Cleveland Clinic, while excellent for almost everything else, has at it's root the IDSA philosophy about Lyme disease. But since you'll be going there for B. afzeli you might get more recognition. I hope so and good luck.
Cave - You bring up a good point about "same but different." That's what throws me a lot. My main goal at Cleveland Clinic would to be rule out andy connective tissue disease autoimmune related. Don't know how that would work with Lyme in the mix.
Jackie C. - Your pay grade? Did you not get the million dollar check I sent you?
Being fairly new to the Lyme Disease world, I have been amaazed how badly misinformed the medical world is concerning Lyme Disease. It shouldn't matter what you "have" or don't have. It's like I said to the last infectious disease doctor I saw. When he said ,"You don't have Lyme Disease," I mentioned to him I never insisted I do. But I said if I don't have Lyme, what do I have? When he said it's not that easy, I folwed by mentioning I never said it is easy, but that is what I camer heere to find out since you are an infectious disease doctor. With that, we were done, and I have not paid my copay yet as a simple protest.
Those of you who have been through many years of this - I am sorry what you have had to deal with in your life. Ignorance, arrogance, rudeness, doubt, mockery, ridicule... I've sen that in less than two years, and if I had not continued to push for answers, I would be sitting here without any clue what could be happening.
Jackie has a good point. All should be taken seriously because lives are in limbo and individual worlds can crumble without strength or help,,, or both.
I was just scanning your previous posts and found this again:
"ALong with that, the LLMD is concerned now instead of having b.afzelii, I have Lyme Disease, which has caused an auto immune reaction causing lipodystrophy."
Lipodystrophy ... just looked it up -- sounds like it's mis-distribution of the fatty tissue in the body, which matches with your description.
So the doc is now thinking might be Lyme (b.burgdorferi) instead of b.afzelli). Okay.
But then he goes another step to think it's an autoimmune reaction, meaning .... that you've got Lyme and it's causing your immune system to react against your fat cells.... er, 'adipose tissue' or whatever the medical term is.
I'd be very cautious about accepting the autoimmune reaction idea. There is a view held by less progressive thinkers in the medical profession that after you get a few weeks treatment with doxycycline for a Lyme infection, you are -- no doubt about it -- CURED of Lyme.
Any remaining symptoms are then called 'post-Lyme syndrome' -- meaning that you still have the same symptoms you had a little while ago, but now, because you've had some antibiotics, you can't possibly have Lyme disease, and it's just your immune system overreacting to the now-vanquished Lyme infection. This is called 'post-Lyme syndrome.' Google it, you'll find it in lots of places.
Lyme docs (LLMDs) say this is balderdash, and I tend to agree with them. Logic says that if you still have the symptoms, then you didn't get a cure. I don't know of any other bacterial infection that would cause a doc to say that if you still have symptoms, then you're not sick, but your daffy immune system just thinks you are.
The reason these docs have come up with 'postLyme syndrome' is to have a reason that a few weeks of doxycycline didn't cure the symptoms. The problem imho is that a few weeks of doxy doesn't usually cure the INFECTION. Infection->symptoms. Therefore inadequate treatment.
This 'postLyme syndrome' position is held firmly by the IDSA, Infectious Disease Society of America. Your doc may be playing for the other team.
I hope I am wrong and he's seeing something different or has different reasoning going on, but...not all LLMDs are created equal. There is no test to be an LLMD, and it's still such a new disease that the docs are all over the place on it, so your doc may firmly believe he IS a Lyme specialist, but he may be using the IDSA playbook.
I would get another opinion. I recall if this has already been communicated above, but you can email to
contact [at] ILADS [dot] org
and tell them where you are located (near what big city or what part of which state) and how far you can travel, and they will send you name(s) of ILADS members nearby. You don't need to tell your current doc you are getting another opinion, but please do consider it.
Thanks. From the moment he said something about autoimmune, I have been confused. In my mind, it may be, and I can't even swear this is b.afzelii involved, but he has not dealt with b.afzelii before, therefore thinking autoimmune instead. That is why I have heavily considered keeping the Cleveland Clinic appt. in rheumotology. That wouldn't be to confirm Lyme Disease, but to try and rule out the auto immmune aspect.
MyLLMD has been very good getting back with me and trying to come up with answers, His daughter has Lyme Disease, which is why he gained such an interest. He did mention he had another patient with similar symptoms, and once treated with antibiotics for a while (he has me scheduled for at least three months IV), the loss of body fat or collagen stopped. That fits the ACA pattern.
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'm lost on all this and now very frustrated. My LLMD was goingto start clindimycin Iv with Gindimax, but the homne company that was setting it up cannot because it is out of state. Has to be one in GA. Haven't heard another word in two days, and the skin (fat loss) continues to get worse. Left a message yesterday but have not heard back.
IF this is ACA, the longer it goes, the more "mostly irreversable damage" gets worse. Think I have stressed myself out to the point stomach is hurting.
I sound like a big baby, but I am so ready to get started on all this even knowing what misery it may cause. And I cancelled my appointments at Cleveland Clinic. I think you were right about how they might look at it all. Not sure what to do. I can get into Jemesek Clininc in a few weeks, but it does not take insurance and a few weeks is a long time right now. SUggestions from all of you I now respect and trust?
Cleveland Clinic might be good ... depends on the doc. You might go anyway and listen with a cautious ear to what they say. Data is data, and then you can deploy as you see fit. Might give you an idea for the next step, even if it's elsewhere.
I have heard of Jemsek but know nothing about him/it first hand or otherwise. Could they put you on their cancellation list?
Given your penchant for research, have you located medical schools and treating/teaching hospitals that have an interest in ACA? When I get a minute, I'll poke around on the net and see what I can find.
Didn't mean to scare you off of the Cleveland Clinic. Even if they are not the final answer, they may have useful bits of information that you could use to plot your next move.
My approach when feeling boxed in is to move ahead on all reasonable fronts simultaneously. Make a list of the top [six] things/places/docs you would like to follow up on and then go for it. That will give you focus, and then modify as data comes back as to expertise, availability, distance, cost, etc.
I think you are doing fine, considering what you are up against. Some would just give up, but you aren't. Keep us posted.
Don't know you, but I consider you a friend. I appreciate your help, comments, ideas, encouragement, etc... No one here understands what is going on with all this. It's like bing out there by yourself ignorant and not knowing what to do next.
With you and others on this site, a lot of that is taken out of the equation. Y'all (okay, I am still southern) have made this much more tolerable. Thanks.
Still hven't heard back from LLMD concerning picc line and antibiotics. Not sure what to make of it. As mentioned, the company that was going to do the IV cannot because of state regulations, but now I have heard nothing and left two messages. Don't know if LLMD is irritated that I asked about the chosen meds or what. I did tell him I am just nervous since this is all new to me. But where I was about to start full, heavy treatment, I find myself instead in neutral,,, again. I like the LLMD and believe the plans he comes up with have thought behind them. Just now?? It will take weeks to see another, but I can't imagine a doctor would just drop without a word.
You're right. Waiting has never been my in my nature. Then again, I ran track and coached for so many years, you were supposed to get there as fast as possible. My son has the same nature,and the good thing is it will pay for his college, even if it drives me crazy at times. I now know what my parents dealt with :)
Seems like it's in your nature to dig facts. I enjoyed it as a reporter and find it helpful in life. I tell my kids if "A" doesn't come through, then go to "B." If B doesn't work, FIND "C." That's what I had to do covering stories with sources fell through or backed out of talking. You have a knack for that. Just curious, if I'm not being too nosey. What kind of work did/do you do? You write like an English major or technical writer/both.
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.
Hope everyone is hanging in there. I have been through the battle of getting mediccinhe started in Georgia, as in picc line for clindymcin. Doctors here of no help, so I will head to Tennessee to get it all started this week. It's a jok, but not a funny one, on how bad the medical system is with Lyme Disease. I understand that more and more. The doctor here in Atlanta who told me I have Lyme Disease won't even help out so I can get picc line at local hospital. Georgia is real tight on who can service it also.
In the last couple of weeks, I have had tremendous fatigue. Much more than usual. Also have lost more fat on body. Guess it's part of it. WOuld like to hear updates on others.
Sorry you have to deal with the frustration of treating Lyme disease. It is terrible. I am glad you are going to Tn to get help but agree with Cave, who will treat your Picc line? I had one in Tx when i lived there ( they dont believe in lyme ) and because they never cleaned it right, it got infected and it had to come out.
My friend who is a nurse with Lyme had to get many because she was too sick to clean it herself and the home health nurse never cleaned it correctly and got many infections.
Fatigue really *****, I do a few things and I am wiped out. Let us know how everything works out. Feel better.
I had a PICC for 17 months. I do have to say that the home health agency was pretty good for the most part. But that was after I 'fired' a couple because they didn't follow sterile technique------ I knew what 'sterile technique' and it wasn't what they did.
I finally got one that was fastidious about the changes.
If you have a nurse that doesn't use good techniques there's absolutely no reason you have to stick with her/him. Be assertive.
There are many sites available on the Internet explaining dressing changes, site management, sterile technique etc. Here is one but I think you'll be given information at the hospital also. Sadly, sometimes that information sketchy and incomplete to my anal retentive mind set.
is from a pediatric hospital but I like it because it explains when sterile gloves are needed (dressing change)
(Don't get confused by all the other 'stuff' meant for nurses)
Through 17 months of having a PICC I never once got an infection. Only once did a line break (for no known reason) but that was easily repaired at the hospital.
There are cast covers available for maybe $20-30 dollars that allow you to take a shower with a PICC. Sometimes people say they cover the arm with Saran Wrap------ I guess they had success---- but I was NEVER going to take a chance with infection just for not wanting to spend a few dollars!
I thought ALL out-of state LLMD's needed a doctor in the state where you live (preferably PCP) to sign off on IV? Not an agreement to authorize or even to treat with abx, but home care services need an in-state doc signature to proceed with inserting picc line.
Quote from one llmd's new patient packet:
I treat with IV antibiotics only when I feel it is absolutely necessary and only if an out-of-state patient has a local health care provider who supports their Lyme treatment and agrees to assist when needed. Before I will consider ordering IV treatment the patient must have already lined up a health care provider near them who is willing to write an order for the placement of the IV line and an order for home health care. An in-state provider must order these two things, meaning that I can only order these for a patient who lives in Washington, DC. I am, however, able to order the actual IV antibiotics, even for out of state patients. I DO NOT HAVE REFERRALS FOR DOCTORS IN VARIOUS STATES WHO WILL DO THIS. Doctors who agree to help do so because of an established relationship with a patient. In summary, this local health care provider will not actually be treating the patient or even co-treating. He or she will simply be agreeing to order both the insertion of the IV line and the home health care.
That is why I am going to Tennessee to have picc line placed. The doctor here, who originally told me she believed it is Lyme Disease, won't return my phone calls with request to have her sign off on using local hospital to have picc line placed. And at the hospital here, they would have performed checks that would not cost me anything if I came there each week.
I have several friends who are nurses and work with picc lines each day. They said they would be glad to come by anmd check to see if liine is working right, steralized, etc...
And I do wonder why you can't get a port instead. Seems like it would be easier, as mojogal mentioned. At this point, thjough, I'm ready to try most anything and face it all as it happens.
Did you read the post Leilajax wrote, right above your last post? Fortunately I read it before I posted my questions.
She gave you some good information to follow up on---from a doctor.
It's good that you have some nurse friends to look in on you. And I'm sure they are competent---- maybe even better than one assigned to you by a home health agency. :)
But I worry that, because they aren't employees of a home health agency (thence covered by your insurance)----- have you checked to see if your insurance company will pay for the IV under those circumstances? I know it wouldn't in many states.
Crossing state lines (with medical care) is a problem involving a doctor's liabilites, licensing, insurance payments.
Perhaps your doctor has a license to practice in both GA and TN? But will the hospital in TN agree to you not having home health agency care in your state/county? The hospital would be massively at fault if they did. But you could check---- I could be wrong.
But please check, o.k? You might just ask your doctor if he's o.k. with that.
Again, thanks for all your ideas and comments. And I have an important qwuestion (at least in my life) atthe end of this.
First, I did read lelajax's comments and learned from them. The problem I have is I have an in-state provider who originally told me she thought I have Lyme disease, based on testing and symptoms. However, and I still don't knwo why, she never would answer if she would simply sign off on having the picc line put in here. And I'm at a point where somethign has to happen because things keep getting worse.
I just got back home after three days in hospital for a racing heart (110-140 BPM) for hour after hour and irregular heartbeat. The local hospital where I stayed had it under control after about a dya and a half, just before they were about to shock the heart back into rythym. That, along with continuing fatigue and escalating skin issues, has put me in a position to "make things happen" because I think my local doctor has gotten cold feet in treating for Lyme Disease because of the CDC. I'm tired, worried, and have been doing nothing now for weeks because of lack of help here.
My question(s) for all of you,m who I have come to trust: I just recevied my co-infections tests beack from IGenex. All negative. That includes B. microti, E. chaffeenis A. phogocytophilus. Don't even know what it all means since the doctor here did not even let me know they were in or had "signed off" on them. Does that lessen the chance I have Lyme Disease?
In my original tests from IGenex in early February of this year results were :IGM - band 30+ 31+ 34 IND 39IND 41++++ 66++ rest were negative. IGG - 39IND 41++ 45+ 58+ Rest were negative.
Is this really a strong case for Lyme Disease before I go up and start IV treatment tomorrow? Some places even say bands 30 and 31 are NOT Lyme Specific as many indicate. So, with all those facts, and I'm sorry to have so much info., do tests results such as the ones presented give a good indication I DO have Lyme Disease, DON'T or just might? Also, I know we add in symptoms, but could those be some kind of other connective tissue disease?
Just confused now, and down to the wire on what to do. The heart deal really added to my apprehension. Do facts play much a role in all this?
Leaving Wednesday morning for Tennessee, but if anyone has time tonight, your knowledge and experience wouild be greatly appreciated. Thanks - David
I have to make this really short, but I really encourage you to proceed with treatment. You have the symptoms and you have a handful of antibodies consistent with Lyme/Borrelia. Your skin issues are quite unusual in the U.S., being found primarily in central and Eastern Europe.
If it's any reassurance for you, there was a study a couple years ago where the CDC two tier testing protocol, including the Western Blot interpretation, was run against European strains of Borrelia. They found that it only accurately reported a positive in HALF of infected patients. (The other half were false negative.) This is clear and indisputable evidence that different genetic variations of Borrelia result in different combinations of antibodies in patients.
I am going to give you a copy of a detailed list of the bands relevant to Lyme. Unfortunately, I failed to save the URL and I cannot remember where I got it at this moment. Given your time sensitivity, I will go ahead and share it here for you rather than waiting until I can find the source. I encourage you to do your own online research on what the bands in the Western Blot mean.
What's really interesting to me is Band 30. You have Band 30. You also have ACA, which is usually found only in Europe (with Borrelia Afzellii).
While it mentions that Band 31 is specific to Borrelia, IGeneX reports that at least one virus can cross react with it. However, Band 31 is one of the two highly common antibodies in Lyme, so common that it and Band 34 were used in the development of a Lyme vaccine (which failed and was pulled from the market).
18 p18 flagellin fragment
23-25 outer surface protein C (OspC), specific for Bb
28 outer surface protein D (OspD); Oms28; specific for Bb
30 OspA substrate binding protein; common in European and one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
You have Lyme antibodies...more than I did. You have serious symptoms that are consistent with Lyme. You have symptoms atypical of North American Lyme, so it's unreasonable to expect that your collection of antibodies will line up with the patients who had sore knees and a bulls eye rash.
Testing negative for coinfections means absolutely nothing for whether you have Lyme. And sadly, it doesn't guarantee you don't have any of them. I tested false negative for Babesia 3 times, 2 of those at IGeneX. While they do better than other labs, there are still many more genetic variations than the antibody tests look for, and direct evidence of a bug is often hard to find. I ended up with a clinical diagnosis of Babesia. There's no doubt I have it. I'm still struggling with it after nearly 9 months of treatment.
P.S. Assuming you do indeed have Lyme, you may not find "absolute" confidence of Lyme until after you start treatment. Don't be afraid to start. Treatment is better than letting your skin and heart issues stop you from living your life! What do you have to lose? Doctors clearly have no other answers for you.
P.P.S. If you are really uncomfortable with the PICC line, ask about shots. A friend of mine who had the PICC line said it didn't bother her at all and her infusions just became part of her daily routine. She said she was thrilled to see improvement with Rocephin.
Question: How long could it take for iv clindmycin to cause a herx. Had first dose today and don't fell any problems. Does it take some time or is it much quicker than oral? Just hopsing this stuff works after going thro9ugh everything to make it happen. Any thoughts? Thank you in advance.
I know it's been a while since you had posted your question about ACA and understood you started treatment of antibiotics.
I had horrible skin breakouts that where treated with steroids first (Yahh, very bad! I'm paying for it now...) over a period of 3 years (I used to break out on overage every 3 months and I had 2 very bad ones; disgusting! ;). The bottom line is I recommend you ask your doctor about putting u on Valtrex (If they haven't already..) on a daily basis.
I take 1 in the AM & 1 in the PM; 500mg pills.
The down side of Valtrex is; It's expensive! You can try the generic kind(Valaciclovir); for me it didn't work for some reason. The valtrex did the generic didn't.
I hope this helps, unfortunately I know what u r going throw. Be strong!
I'm in treatment since Feb 2012, I still get little breakouts even-tough their not as nearly as bad!
Did you lose any body fat through all this? And I was on steroids for Sweets Syndrome before all this started. Understand your concern on that. I appreciate your comments and thoughts. Will look into Valtrex and ACA connection.
I have ACA on the top of my right hand, and now patches coming up on my legs. I have late-stage Lyme's, and receive alternative treatment from a D.O., but he is not familiar with ACA. I went to my dermatologist who doesn't know I have Lyme since I'm trying to keep that quiet so I don't lose my health insurance, and he said it was Granular problem, which it isn't. It's not in circles like that. My ACA is reddish, and periodically there is a bit of scabbing as though it wants to heal but doesn't.
A while back I saw a Lyme patient on Youtube. who has this. Her hand looked just like mine.
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.