An excerpt: "Diseases have histories. Lyme disease, infection with the tick-borne spirochete Borrelia burgdorferi, acquired its identity and name when mothers of affected children pressed it into medical consciousness.
The disease has continued to have an articulate, populist constituency, ardently advocating for enhanced recognition and treatment. Tension has resulted when scientific fact has diverged from advocates' beliefs.
Particular controversy concerns patients with chronic symptoms, including cognitive and memory impairment, attributed by some to persisting infection with B burgdorferi despite previous treatment with usually effective antimicrobials. Proponents recommend many months-long courses of antimicrobials.
In contrast, panels of the Infectious Diseases Society of America and the American Academy of Neurology have concluded that Lyme disease is treated effectively with several weeks of antibiotics. (Since these publications, an additional European study has similarly found that prolonging treatment of disseminated Lyme provides no additional benefit.)
The guidelines have met with advocates' ire--and with subpoenas from the Connecticut Attorney General, contending that such recommendations constitute unlawful restraint of trade.
In this issue of Neurology�, Fallon et al. address the core of this controversy. Thirty-seven patients with prolonged cognitive and other symptoms after treated Lyme disease were randomly assigned to double-blinded treatment with 10 weeks of IV ceftriaxone or placebo. The subjects were reevaluated 12 weeks after starting treatment, and again 12 weeks later. Treatment resulted in no sustained benefit."
The last inpatient place I worked we kept HIV+ positive patients on anti-virals and anitbiotics for years without question because they improved and sustained their quality of life WHILE THEY CONTINUED ON THEM. No question about it.
Aren't Lymed lives worth living? Mine is.
How throughly unscientific an editorial to disregard the science of Fallons study entirely- I am disappointed in Halperin. I thought he was more than that.
Posted by Walnut (Member # 6585) on :
I am surprised that the journal Neurology would publish an editorial that misrepresents the findings of Fallon's study.
Halperin wrote: that "the subjects were reevaluated 12 weeks after starting treatment, and again 12 weeks later. Treatment resulted in no sustained benefit."
In fact, Fallon et al. found a huge improvement at 12 weeks. And found sustained benefits in pain and physical functioning.
Posted by Michelle M (Member # 7200) on :
Many will not bother to read Fallon's actual study, only the IDSA's spin on it.
Fortunately many news services have done a better job presenting the study than others, so it will leave its mark regardless of idiots like Halperin trying to discredit it.
Michelle
Posted by onthemend (Member # 13454) on :
Hi all, Halperin was one of the neuros that I saw during my long, dark trip to diagnosis. I really went to him as more of an 'MS' man - at the time I was unaware of his Lyme credentials.
He was quite intelligent, did the thorough neuro exam, spent a lot of time getting my full history of symptoms. By the time I saw him, I had a massive portfolio of test results to share, and he ordered a few more just for good measure. Which all resulted in a diagnosis of 'nothing'.
Four months later I saw an LLMD just on the rec of a friend. I didn't expect anything, as I knew I'd already been tested for LD and was negative. This LLMD listened to the tale, looked at all the tests, and started me on doxy right away based on his CLINICAL assessment of my case.
First week on abx, worse than ever. Thereafter, better and better all the time, and now I have some semblance of my life back, although I can see it's going to take a long time to get all the way there.
So, that's the great Halperin. Not that anyone can't make a mistake, and not that Lyme isn't a big, huge mystery for everyone, but - it never even occurred to him? Or if it did, he was able to so quickly dismiss what did turn out to actually be the problem?
And all of this happened in NJ - a Lyme endemic state.
onthemend
Posted by canbravelyme (Member # 9785) on :
Did Fallon actually say in his study that there was no improvement at 12 weeks? Or is Halperin making this up entirely?
What exactly did Dr. Fallon say that is being quoted here? I don't recall reading this in TC's post of synopsis, and couldn't access the article in Neurology.
EDIT- I followed the link on Walnut's post and can access the journal, Neurology. I'm going to read the pdf when I go to my computer.
Thank you Walnut for posting this.
With best wishes to all,
Posted by Mo (Member # 2863) on :
misrepresentation of information and baseless commentary is no new thing for those operating in and under the IDSA guidelines regarding chronic lyme.
it was always true that the IDSA was basing their claims on a tiny fraction of research. (the 400 articles cited can all be traced back to just a few commom sources of objective data, while totally ignoring mountains of scientific research on chronic TBI's)
now that there is a credible placebo study, most of the "medical advise" proffered by the guideline authors looks, scientifically speaking, like a bunch of baloney at best.
(this is only my humble opinion, of course.)
mo
[ 12. October 2007, 12:56 PM: Message edited by: Mo ]
Posted by Areneli (Member # 6740) on :
He targets these MDs that either don't like reading original research or cannot understand it.
You wouldn't believe how many physicians base their knowladge on abstracts alone and how many love when somebody will translate difficult science and statistics into simple conclusion.
Posted by David95928 (Member # 3521) on :
Is Halperin associated with a university? If so, then there is the possible avenue of this "editorial" being looked at as possible scientific misconduct, due to his obvious distortions of the facts of Dr. fallon's paper.
Posted by Walnut (Member # 6585) on :
I posted the actual conclusion from Fallon's study here on Lymenet in a post titled "Fallon's study in neurology." I will move the post up.
Posted by ldfighter (Member # 9405) on :
quote:Originally posted by David95928: Is Halperin associated with a university? If so, then there is the possible avenue of this "editorial" being looked at as possible scientific misconduct, due to his obvious distortions of the facts of Dr. fallon's paper.
He's a clinical professor at New York University Med School.
Posted by David95928 (Member # 3521) on :
That puts it in Fallon's court.
Posted by onthemend (Member # 13454) on :
J. J. Halperin set up a practice and is affiliated with a hospital system here in NJ (among many other things, I'm sure.) He moved over from Long Island, actually with hopes of setting up a sort of 'NJ wing' of Columbia Neuro/Lyme. At the time I saw him (early 2007), that plan was stuck in the mud. Who knows why - maybe this disagreement?! I have no idea what the status of that concept is now. Maybe Halperin has moved on. Anyway, there's a little history there.
In May 2007 he was one of the authors of a 'special article' published in the American Academy of Neurology pub, titled "Practice Parameter: Treatment of nervous system Lyme disease (an evidence-based review). This article concluded after review & correlation of a bunch of previously completed studies, that there is no 'proven' value to long-term abx treatment. The wonderful MS-specialist neuro I visited subsequently had the article on the top of the pile on his desk and showed it to me - great!
Halperin is well thought of in the medical Lyme community, but his ideas and conclusions are definitely quite different than Fallon's. TGFF - Thank God For Fallon!
onthemend
Posted by Aligondo Bruce (Member # 6219) on :
One thing that is being missed in all of this spin is/ are a few crucial details. First of all, this fallon study was primarily a study of arthritic lyme disease complications. Only 3 of the patients had a history of meningitis or encephalitis. Fallon points out in his conclusions that he feels subgroups with greater neurologic involvement might benefit more from antibiotics than the general post-lyme population.
More importantly, this study failed to mention anything about the biologic functioning portion of fallon's work. He is planning on publishing a separate study which compares MRI and PET results. Until we see correlation of these results, this study in and of itself means little. Having a bad SPECT, PET, or MRI was not a qualification needed by the subjects for inclusion in the study. The primary qualification was sero-positivity to CDC criteria, criteria which were established largely using arthritic patients. Fallon might find that these patients aren't exhibiting significant PET or MRI abnormalities. That would be a highly significant finding.
Post-infectious fatigue, etc. are common among infectious diseases. But with lyme, there might be several things going on here. I'm not sure that things are as simple as Halperin, Wormser, etc. would like people to think they are. Among other things, the CDC criteria might be excluding late neuros from diagnosis, which also means they are excluded from qualifying for the study criteria. There might be another agent in the ticks causing the bad SPECTS. Columbia recently hired a couple of guys to search for this exact thing.
If you read the Fallon study carefully, you will notice that he included a normal control as well as a placebo control. You couldn't be a normal control if you had a fibro or CFS diagnosis. I'm pretty sure that makes lenny sigal kind of nervous. Again, I'd advise people to wait for the biological functioning/brain structure portion of this study to be published before drawing any firm conclusions.
Posted by polar blast (Member # 9142) on :
dr halperin is not on your side..he is your enemy...you could have full blown lyme and he will tell you that it is not..he has a secret agenda..we will see what it is in time..in the mean time nobody should frequent this bafoon...
Posted by Soleilpie (Member # 8481) on :
10 weeks IV Ceftriaxone, then stopped treatment. At week 12 an assessment was done. At week 24 an assessment was done. Total study time was 24 weeks.
At week 12 (2 weeks since stopping IV abx treatment) cognitive, physical functioning, pain & fatigue improvement was better in Ceftriaxone-treated patients than in the healthy controls & placebo-treated patients.
At week 24 (14 weeks since stopping IV abx) patients lost the cognitive improvement gains seen at week 12. The improvements did not remain (which is typical...it's why a lot of you feel you need to remain on antibiotics for maintenance).
BUT improvement did remain at week 24 for for pain & physical functioning, specifically those who who are more severely affected.
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by Soleilpie: 10 weeks IV Ceftriaxone, then stopped treatment. At week 12 an assessment was done. At week 24 an assessment was done. Total study time was 24 weeks.
At week 12 (2 weeks since stopping IV abx treatment) cognitive, physical functioning, pain & fatigue improvement was better in Ceftriaxone-treated patients than in the healthy controls & placebo-treated patients.
At week 24 (14 weeks since stopping IV abx) patients lost the cognitive improvement gains seen at week 12. The improvements did not remain (which is typical...it's why a lot of you feel you need to remain on antibiotics for maintenance).
BUT improvement did remain at week 24 for for pain & physical functioning, specifically those who who are more severely affected.
Thank you, Soleilpie.
That seems to be the conclusion that everyone is suddenly overlooking.
Aren't relief of pain and restoration of physical functioning worth fighting for? I should think so.
The study has been SPUN so badly that no one is even remembering the good news out of the whole thing.
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