Acrodermatitis Chronica Atrophicans
I saw a little old man with a rash on his feet. Actually, his blood pressure was also off the wall (because he'd run out of his meds long ago) and his liver function tests had been way out of whack the last time I'd seen him. He'd never come back for me to work them up, so when he finally showed up again I was really worried that he was riddled with cancer or something.
To my surprise and relief, his LFTs were perfectly normal, and his BP came back down nicely once he re-started his meds. But he kept complaining about this rash on his feet.
He said it was painful, with a burning quality. It had been there for several months and he didn't remember much about how it began. On exam, the tops of his feet revealed a very well-demarcated area of redness, with some skin thinning (increased visibility of blood vessels) but hard to tell because the skin on the dorsum of the foot is very thin anyway.
I struggled to get a history of something he had used topically -- lotion or something -- or sandals he'd worn in the sun. I could have sworn it was some version of contact dermatitis because the rash was so well-defined. (There's a saying I made up: "Dermatology is like real estate: location, location, location.") I tried various forms of topical moisturizers and steroids; nothing helped. Finally he asked for a referral to a dermatologist, a request I did not find unreasonable.
The dermatologist sent him back for a blood test: a Lyme titer. Frankly, I thought the patient had sustained a tick bite between seeing me and the derm, and the derm wanted to rule out ECM. Imagine my surprise when the Western blot came back with every single band positive for both IgM and IgG. I even got a phone call from the derm, letting me know the rash was a "classic case" of acrodermatitis chronica atrophicans, a manifestation of late stage Lyme disease (and he had called in all his students to take a look.)
I had never heard of it.
But I went and looked it up [contrary to the epithets hurled by the latest batch of chronic Lyme disease groupies, I do read and research things for myself] and sure enough, there it was. As it happened, none of the pictures I saw really looked anything like my patient's rash, so I'm not beating myself up over it. Still, it was interesting to learn something new.
The rest of the story is a bit of a downer: we'll treat him with antibiotics for 21-30 days, but chances are at this point that the damage has been caused by B. burgdorferi antibodies and not by the organism. Still, we'll tell ourselves we're killing whatever's there. The other problem is that antibiotic treatment may not help the burning pain, which is apparently considered to be neuropathic in origin. I'm going to try him on some neurontin and hope for the best. The dermatologist concurs.
I don't disagree that Lyme disease can be a nasty condition, with protean manifestations and long range problems if unrecognized and untreated. However it needs to be made very clear that LATE Lyme disease (skin, joint, heart and neurological symptoms) is not the same as CHRONIC Lyme disease (a nonsense label given to syndromes consisting of vague subjective symptoms of pain and fatigue.) I feel bad for folks suffering from the symptoms labeled "chronic Lyme", but the true complications of late Lyme disease will always keep us on our toes.
posted by #1 Dinosaur @ 6:10 AM
11 comments
11 Comments:
1. Lyme Disease groupie? I assure you this is one group to which I wish I had never belonged, and it's a given that everyone else on the Lymenet board feels the same way. The implication is that we like having a disease to call our own, or even worse, that we like having a disease when we're really perfectly healthy. Well, in my case at least, I'm probably the least hypochondriacal person you'll ever run into, and your insult is wide off the mark, at least in my case. People had to drag me off to the doctor when I was walking around with TTP purpura looking like a beaten woman. I first got sick in June, showed petechiae and purpura and blood in urine by July, and didn't see a doctor until August. So if anything, I'm the diametric opposite of an illness "groupie." And if there's one thing that story should alert you to, it's the fact that not all TTP comes on like gangbusters, the way they say in the textbooks. It's the arcane articles where the authors note that TTP is changing in its way of presenting.
2. I had some odd rashes, including two things that blossomed on my legs while I was in the hospital in 1999 and that never went away. I wondered whether they were ACA and pulled up picture after picture off the net from derm textbooks, including some that my spots resemble. However, neither of two derms knew what they were, and the LLMD emphatically said they were NOT ACA. So you see, not all LLMDs are quick to lay at the door of Lyme any sniffle that comes their way. During those two months in the hospital, I had all sorts of skin thickenings as well as itchy patches, which is what led one doctor to suspect polymyositis/scleroderma after I had a positive ANA. Further testing showed that I did not have it (thank God). They all resolved even without abx.
3. Regardless of whether your patient's rash and burning are caused by the spirochete itself, its toxins, or the patient's own antibodies to borrelia, it still is reasonable to assume that a course of antibiotics will kill most if not all spirochetes, and with luck his immune system will take care of any stray ones that the abx don't get, and that that will prevent any further toxins or antigens from being released into his system and that therefore his own immune system will eventually quiet down. So I have no idea why you seem apologetic about giving him doxy ("We'll tell ourselves we're killing whatever's there.")
4. Okay, so the real issue is whether spirochetes can survive 30 days of doxy. Well, I'm not going to run off to the NY Academy of Medicine and read William Osler and the tens of thousands of articles on spirochetes, because, well, because I guess it doesn't matter all that much to me. However, the following are the salient points about my WB tests:
In 2001, via Quest labs, positive for IgG bands 58 and 93, negative for all IgM. This particular doctor is a fancy Park Ave ID guy who had lots of patients with country homes, and so he listened to my story about the myoclonus and the lancinating pains and immediately diagnosed Lyme. I'm sure you know that the CDC requires what, five bands positive for Lyme for reporting purposes, but when I asked about the discrepancy he told me that bands 58 and 93 are specific to Lyme, and irrespective of the CDC reporting requirements, I simply wouldn't be positive for those bands unless I had borrelia floating around. This ID doctor gave me a month of doxy. When I still had symptoms two months after that, he refused to give me any further abx, so I went on my way in search of an LLMD. I found one in upstate New York who enrolled me in a study where I took amoxycillin for several months. In May 2002 I found another LLMD, and here are my test results from then, via Igenex labs: Equivocal IgM, with positive bands 23-25, 41 (yet I've read that this band is worthless because every Tom Dick and Harry microbe has a protein of that weight) and 45. Definitely positive IgG, bands 18, 23-25, 31, 34, 41, 58 and 66.
So, if one month of doxy kills all the critters, why was I showing a positive current ongoing infection fourteen months after the doxy? And no, I was not bitten again. There's absolutely no way I was re-infected, unless there's a vector that people don't know about yet. How long does it take for antigens and antibodies to clear from the blood? This LLMD blasted me with plaquenil, malarone, cipro, and well, it's been five years, so I don't remember what else. I do know that within a week of starting his regimen, the myoclonus, fasciculations and word reversals noticeably diminished. They took a few years to completely disappear, although I'll still get a little fasciculation once every few months.
I didn't go to the doctor for five years after that, but this spring, I went to a rheumatologist (chair of the dept at a major NYC hospital) just to check out some stubborn arthritic pains that wouldn't go away. My ANA was weakly positive again, and I was weakly positive for RA, and I had high eosinophils. This time, I didn't even need to go to the Academy of Medicine, because Wikipedia informed me that I needed to look at mycoplasma. I called the ID doc in NYC, but my eosinophil-RA-myco talk was way too altie, as you call it, for him, and so I went back to the second LLMD in upstate NY. A confirmatory test ruled out RA (thank God), I have sky high antibodies to mycoplasma pneumoniae and chlamydia pneumoniae (did u have that ten-week cough this winter in Philly the way we did in NYC?) and here are my Lyme results (also from Igenex): Negative on the IgG, with bands 31 and 39 indeterminate, triple positive on useless band 41. Negative on the IgM, with 31, 39 and 41 indeterminate and still positive on 18 and 58.
So basically, anyone can conclude anything they like from that. You can say, yes, the bugs survive, or you can say, only the immune response survives.
But while you in particular claim to read the articles, you also admit that you had never heard of ACA, and if you've never heard of ACA, then I can conclude that while you may read SOME articles on Lyme, you haven't read many, and I assure you that there really are plenty of scientific articles that show the hardiness of borrelia and their ability to survive 30 days of doxy. (Again, I've done my time at the New York Academy of Medicine, and I'm not going to do it again, so I'm not going to provide you with a list.) I also urge you not to be so quick to accept what one group says. After all, absence of proof is not proof of absence, and look at how the Hungarian hand-washing doctor and the guy who discovered H.Pylori turned science on its head. Medicine is full of new discoveries, so why accept dogma? You may not have the time to do the necessary research, because this isn't your specialty. But if so, you still don't need to accept the party line.
Whoa. Okay my comment isn't gonna be nearly as intellectual as the previous one (I mean, after all, this IS me we're talking about) but this IS a different case isn't it. Plus, you're a right curmudgeon, you know that? They're not dragging your dead cold carcass from anywhere, at this rate :)
@ ilona:
"Amoxycillin?"
Wikipedia as a _health resource?_
Have fun with your LLMD, wacko.
-MBPharmD (new reader, big fan Doc)
Hey, Anonymous:
I wasn't the one who prescribed amoxi, someone else did. As for Wikipedia, it pointed me in the right direction, because that's what my antibodies show. In fact, the myco/RA link has been known since the 1930s, and Wiki saved me the time of going through a lot of literature. So it's a resource that in this case worked, hard as it is to believe, even without your approval. As for calling me a wacko, is that supposed to convince me of anything at all? Insult the LLMD all you want, but he was able to get rid of my neurological symptoms. Why don't you take a tip from Angry Medic, who's able to make a point in a civilized fashion worthy of a Cambridge educated physician, which is more than can be said of you.
Hey wacko -
If you can't spell a very basic drug correctly, no one is going to take you seriously.
Wiki saved you from *going through the literature?* But that's what you HAVE to do to make an informed choice. Oh, wait, nevermind, let the bogus online "encyclopedia" editied by 100s of anonymous users critically evaluate the literature.
Correlation does not equal causation.
Hey, pharmacist: One spelling mistake does not negate the validity of the rest of what I say. You split pills every day and see these spellings. I haven't seen them for years. I'd like to see you know one percent of what I do for a living the way I know what I've had to learn about Lyme Disease and by extension some of what you do for a living. As for correlation equalling causation, that's just what the tobacco industry said for years, isn't it. In fact, it's doctors who say, if it walks like a duck, etc. Well, I had the symptoms that matched the presumed microbe and the blood tests showed that the presumed microbe was the culprit, but to you that's just "correlation" because you don't like the diagnostic path I started on? As for your calling me a wacko, what's the matter with your personality that you are so quick to resort to schoolyard bullying? Why don't you read all my posts about my journey through Lyme Disease and TTP before you come to a conclusion, and then, if you can't say anything more reasoned than what you've said so far, keep it to yourself. Why don't you answer the question of why I had a positive IgM and IgG a year after a course of doxycycline? Or are you capable of posting only about hotel rooms or when it's to insult someone? It's good you're not a doctor, because someone with such an immature and judgmental personality shouldn't be in a position to treat people. As for lectures on anything from you, based on the lack of substance in your posts I'd bet my bottom dollar that I'd leave you in the dust on any standardized intelligence test, regardless of a misspelling of amoxicillin. And once again, I deeply and sincerely apologize for having had the impertinence to permit my myoclonus and fasciculations and other neurological symptoms of Lyme to resolve in a manner and through a physician that didn't meet with your express approval. And I'll be sure to tell the folks at Wiki for you that the peer-reviewed scientific journal articles they footnote are all bogus.
Hey there wacko. Good to see you posting again.
First of all, I'm a clinical pharmacist in a hospital. I don't "split pills" but thanks for assuming.
The literature citations in Wikipedia are useless if they're not thourough. In other words, I could write my own Wiki article with 10 times the amount of citations that disprove everything you say. But since it's contrary to your own personal experience (a randomized controlled trial with an n of 1) you refuse to even humor it.
I'm sure you're smart. I graduated with a doctorate with a 3.96 GPA, Valedictorian of both my high school and college classes. But again, I'm just some dumb pill counter. I'm sure you'd "leave me in the dust" in a standardized intelligence test.
Anyways, I've wasted too much of my time in this silly argument. Agree to disagree?
Uh-oh. You misspelled 'thorough'... so why should I take you seriously? Congratulations on your high grades. I never went to law school, but I did score 99th percentile on the LSATs. As for leaving you in the dust, after Lyme Disease, Fentanyl and middle age, well, maybe that's not so true any more. My big problem with you was and is the use of the word wacko and the tone of your earlier posts. Are you taking charm lessons from Simon Cowell? If that's your idea of cool sophistication, then at least lose the brutish rudeness and come up with something clever. Whatever the reason, the fact remains that there are people who need more than 30 days of doxy to get better from Lyme. While my personal experience may be a trial of one, there are a lot of people who do get better, as I did, with antimalarials or other abx. Why do you discount anecdotal experience, especially when it's repeated in one person after another? No one really knows one way or the other at this point if it's because the spirochetes are still there, or there's some other bug, or HLA-DR4, or something else altogether. Everybody has their studies, and then the other side pokes holes. And I can't see why it's such a sin to prescribe a few months of abx -- could it be because they're old and the patents are expiring or have done so already -- when other dangerous drugs, preferably new and expensive, are handed out like candy. Antibiotic resistance, you say? I'm not sure of the exact number, but somewhere around two thirds of all abx in this country go into animal feed, and I read that in a European country that banned abx in animal feed, abx-resistant infections in humans plummeted shortly thereafter. And how many kids get blasted with abx for ear infections they'd never get if their parents didn't let them eat so much junk food -- not to mention other illnesses. As for your argument, other than that I shouldn't trust Wikipedia -- and I'll grant you that their article on TTP is cursory at best -- well, you haven't really spelled it out. Is it that my antibodies to mycoplasma are just an artifact? That even if I am infected, that microbe isn't what's causing me any problems? Or that it will go away without abx? Or that Lyme Disease doesn't exist? Or that "chronic" Lyme doesn't exist? Or that all LLMDs are worthless? So I can't agree to disagree with you on anything other than that I'm a wacko. OTOH, I don't want to waste any more time with this, so if you send me some links to articles that will edify me, thanx in advance, and otherwise, well, try not to be so damn nasty. You'll catch more flies with honey than with vinegar.
Ok, folks; time for some chillin'. Nothing personal, Ilona, but you're getting tiresome. (Ear infections from junk food? WTF?) I think Anon/Clinical Pharmacist's agreement to disagree is appropriate at this point.
By Kathy S in washington state 2009!
To the old dinosaur that went through med school a thousand years ago (in medicine you NEVER know it all) and forgot about the other spirochete disease,cousin to Borrelia bergdorferi called "SYPHILLIS". Much like the Tuskegee experiment and the politics that denied chronic illness with syphilis, stupid politics prevail.
anon. uses the anonymous because he's a politically motivated A.H.
and dinosaur, well obviously, he's too old and crusty to take the time to continue his education by, OMG! actually READING the literature out there! There are literally thousands of yes "pub med" published papers dealing with bio films, persistent disease in Lyme etc....in spite of the cover up by the IDSA, who by the way lost the lawsuit by the Connecticut attorney general and are complying with court orders due to their huge illegal conflict of interest activities in publishing illicit and illegal guidelines that contributed to their fat pockets in their FAT greedy rear ends. for more information to those who care about their patients enough to continue to educate themselves
Google: under our skin a non profit organization/website that gives numerous links (to stat with) to more information for those who have scientific minds versus political and closed.
In Lyme discussions one has to ignore the bullying - it is the tip of a trend in online harrassment that began during the Lymerix fake vaccine cover up and court case in which the guilty liars lost but somehow were not locked up, it is what led to the outlawing of such cyber harrassment. Truth is that any such post ought to be deleted - or neutered by removal of the foul rudeness. There are huge vested interests wanting to cut their costs and liabilities (insurance companies, with their 'scientific' advisors) and to max their IP patent profits (more 'scientists' including Steere et al)
There is plenty of information here on who is involved and how:
http://groups.google.com/group/sci.med.diseases.lyme?hl=en
e.g. from Mort
http://www.actionlyme.org/BRAIN_PERMANENT.htm
It is pretty hard reading, but this guy is a very brainy analytical chemist highly motivated by having Lyme himself - he hates liars, he hates complicity and he loathes bad science; one problem with lyme is not finding information - where Wiki is just one of many sources, it is realising that the IDSA have many members with unresolved conflicts of interest that exceed their scientific integrity 1000-fold and lies continue to be propogated affecting USA medicine and european medical understanding. You cannot rely on truth arising from papers published (with peer review) by any of the IDSA committee/workgroup. Period. The IDSA guidelines suck. Maybe the revised IDSA guidelines will be better, meantime we have guidelines from ILADS and Burrascano.
Well done ilone - as well as doxy it can help to have metronidazole or tinidazole to hit the remaining cysts. Unless they die, the illness will recur. Not a pleasant AB, as it can hit serotonin causing bad depression, but it does clobber the cysts.
No dinosaur, I don't find your learning new tricks surprising, nor do I find your being unaware of a medical condition shocking, but had you done more than run the usual tests and actually taken the complicated catalogue of symptoms that, admittedly, this patient might not have been able to describe, I hope that you might have asked yourself, "Do I feel lucky?" and pondered whether so many symptoms might have been caused by one infection... after all, knowledge of syphilis is taught at med school and that has wide ranging symptoms; point is, if a 'good' patient arrives able to provide answers and descriptions of the onset of and nature of a great many symptoms, would you be up to taking notes and attempting a clinical diagnosis? be able to attempt to narrow in on what might be responsible, the better to choose tests and interpret their results? These are proper tests of a skilled MD, dinosaur or no.
It might be kinder if you reserved judgement of the affected patients for medical conditions you already understand, like the common cold, flu, cough, sore throat, etc.
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