Some doctors overtreat Lyme disease Kenneth Sosnowski
Sosnowski, of Salem, is a microbiologist with the Infectious Disease Physicians and Microbiologists, University of Virginia School of Medicine, Roanoke-Salem Program in Infectious Diseases.
In response to your Oct. 11 news article, "Shining a light on Lyme disease," I would like to shed further light on Lyme disease.
Antibiotic treatment is highly effective for the acute and late manifestations of Lyme disease, which is caused by the tick-borne bacterium Borrelia burgdorferi. In most patients, symptoms resolve completely after one course of antibiotic therapy.
After appropriately treated Lyme disease, a very small percentage of patients continue to have subjective symptoms -- primarily musculoskeletal pain, neurocognitive difficulties, or fatigue -- this disabling syndrome is sometimes called chronic Lyme disease or post-Lyme syndrome.
Because of the substantial morbidity and even death associated with prolonged intravenous antibiotic treatment of Lyme disease, the efficacy of such therapy was tested in a clinical trial carried out at Tufts University School of Medicine, Yale-New Haven Hospital, and New York Medical College and published in the New England Journal of Medicine in 2001.
This study showed that treatment with antibiotics for 90 days did not improve symptoms more than a placebo.
Therefore, Dr. Allen Steere, the doctor who named Lyme disease, has recommended that, at present, such patients are best treated symptomatically rather than with prolonged courses of antibiotic therapy.
For the minority of individuals who continue to manifest neurocognitive or musculoskeletal symptoms, there may be considerable impairment in health-related quality of life, but there is no proven benefit for prolonged antibiotic treatment.
Overdiagnosis and overtreatment of Lyme disease are recognized. Both patients with chronic Lyme disease and patients who do not have Lyme disease but have similar symptoms are at risk for inappropriate prolonged treatment.
Luckily, samples from animals and ticks show that Borrelia burgdorferi infection is less intense in Virginia than in the northeastern United States, and the risk of human exposure to Lyme disease is substantially higher in coastal areas than elsewhere in Virginia. Here in the Roanoke valley, Lyme disease is rare.
Posted by SuZ-Q (Member # 5903) on :
Can anyone help me with resources to refute this letter? I did find the following excerpt from the Jemsek Clinic website:
"As reported in a summer 2001 article in the New England Journal of Medicine, approximately 125 individuals with ``chronic LD'' were randomized into two groups, one receiving placebo and the other 30 days of IV Rocephin followed by 60 days of oral doxycycline. In essence, the trial showed no difference in benefit as gauged by Quality of Life (QOL) questionnaires (121). Certain reviewers saw this as an affirmation of their belief that IV therapy was overused and wasteful, whereas others criticize various aspects of the trial, e.g. arbitrary length of IV antibiotics, the inherent faults in QOL reporting, etc. It's safe to say that the trial has changed few minds and that opposing parties simply reaffirmed their pretrial bias. We regret that this trial did not include, for reasons unexplained, LD patients with documented neurological deficits. On the other hand, the trial was so badly and fatally flawed that this point almost does not matter. Hopefully, better science will follow soon. We deserve it and we need it..........maybe we'll have to do it.
The JEMSEK Clinic has attempted to integrate various elements of what is known about persistent LD and the biology of the infection. On reflection, it seems reasonable to assume that a chronic CNS infection with a slowly replicative organism like Bb will require prolonged therapy, preferably with an antibiotic with a delivery that allows for the highest drug levels possible in the CNS. For this reason, we treat severe and chronic CNS manifestations of neuroborreliosis with IV antibiotics for as long as 16-32 weeks and have noted repeatedly that clinical improvement may not become apparent until several months into therapy, although we generally see some effect by the third month and certainly the fourth month of therapy (more on concepts of therapy below).
The emerging research on a chronic, cystic form of Bb has changed the long-term treatment picture. In theory, biologic and environmental stress promotes conversion or ``morphing'' of the spirochetal form to a cystic form, apparently within hours, and this form exhibits different surface antigens and therefore a different presentation to the immune system. The converse is documented, i.e. the cystic form can readily convert back to the spirochetal form (122). It is known that antibiotic pressure, utilizing medications effective against the spirochetal form, accelerates cyst formation (123). In vitro, incubation of Bb with ceftriaxone, for example, leads to Bb cyst formation after just four hours, much faster and more completely than doxycycline exposure (123). As expected, neither of these compounds (or any other commonly used antibiotics in LD) have any effect of the cyst. On the other hand, many studies indicate that metronidazole is effective in killing the cystic form, but not the spirochetal form, of the Bb bacteria (124). . .
For that reason, many Lyme aware physicians have begun to see the value of using combination antibiotic therapy with the addition of the agent metronidazole. In our experience, patients with Long term suffering neuroborreliosis patients seem to have the most difficult time with this therapy, suggesting that the cyst load may be higher in this patient group. If this is the case, one might suggest that conversion to a cyst form is a natural evolution of the illness for at least some Bb strains."
We need to fight such negative publicity as the letter to the editor of the Roanoke Times. Anyone who can provide me with published info to refute would be most appreciated!! Suzy
Posted by timaca (Member # 6911) on :
Yes...Dr. Fallon's latest research study, which is yet to be published, shows that patients on 10 weeks of IVs (who had previously been treated with 3 weeks of IVs and had relapsed) showed improvement.
He is presenting at the lyme conference on Friday.
I think there is a link to this topic at www.lymediseaseassociation.org Scroll down, and you should find something about it. His website may also have something about it too...www.columbia-lyme.org.
Posted by ConnieMc (Member # 191) on :
Isn't there a pretty active support group just now pulling together in that area? Wondering if the article referenced in this letter was one they initiated.
I had the same thing happen last year. A few of us were able to get an excellent, comprehensive, 1 1/2 page article in the Roxboro, NC newspaper, and the ID docs from Duke wrote in to dispute it. We had quite a mud-slinging match there for awhile, but ultimately, the Lyme sufferers had the last word.
Wonder what drives these doctors to jump all over this topic whenever we do get to the media. I just wish we could mail all of them an envelope of infected deer ticks so they can walk a mile in our shoes. Now, that would convince them!
Posted by lymeout (Member # 8045) on :
I would like to ask Mr. Sosnowski what other sources of information or research he is basing his opinions on. It is terribly irresponsible and even dangerous to put such misinformation out there when you are in such a position as he. I live in suburban Northern Virginia; and my vet told me recently that 1 out of every 4 dogs (or it might have been all pets) they see test positive for lyme! Do they think these ticks are dining exclusively on our furry friends?!! All of us, at least those of us in VA need to respond to this and ask him to provide facts to support his case.
Posted by diana (Member # 7466) on :
I saw this earlier today and it made me steaming mad I have come accross a couple of doctors here in Canada who hold these views. Why are our physicians not being told the way it really is? This is so frustrating! My heart breaks knowing that there are people with lyme that are being told that this is gospel.
Here is the basic info you will need after you re-read Sosnowski's statement as posted by Sarah, above.
Ann - OH
The Roanoke Times Wednesday, October 26, 2005
Some doctors overtreat Lyme disease
Kenneth Sosnowski
Sosnowski, of Salem, is a microbiologist with the Infectious Disease Physicians and Microbiologists, University of Virginia School of Medicine, Roanoke-Salem Program in Infectious Diseases.
Posted by krazykt1 (Member # 3739) on :
Steere needs to be publicly exposed and (rightly and scientificly discredited)which would give the lyme community a place to start accurately educating. But cowards never fight in the light of day...they remain protected and unchallenged. Wonder why?
Posted by Neil M Martin (Member # 2357) on :
krazykt1
I wrote three letters to Dr. Steere.
In Nov 2004 I said only on-going IV and oral antiboitics help my Lyme disease symptoms. His colleague wrote back, sympathetic about my "medical problems" and suggesting on Dr. Steere's behalf that I see a university hospital rheumatologist.
I wrote back and said I'd been to one: he said no MD in AZ is Lyme literate and I should go to a part of the country where Lyme is endemic to seek a Lyme disease specialist "there."
I also asked what HE WOULD WANT if HE were bitten by a tick and stricken with refractory Lyme disease that required ongoing treatments with antibiotics.
By Feb 2005 he had not answered. I sent a third letter asking him to reply to my second letter.
Dr. Steere never did reply and my question is still begging.
![[Mad]](mad.gif)
I have come accross a couple of doctors here in Canada who hold these views. Why are our physicians not being told the way it really is? This is so frustrating! My heart breaks knowing that there are people with lyme that are being told that this is gospel.