Studies on cases with chronic Lyme disease?

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Studies on cases with chronic Lyme disease?

Post by X-member » Wed 5 Mar 2014 0:30

Canada's LD Bill C-442 -- March 3rd 11 am EST

http://www.lymeneteurope.org/forum/view ... 253#p37796

From the post/thread above:
Evidence for Treatment

There have been four studies to date of long-term (up to 12 weeks) antibiotics (Kempler et al 2001(2 trials), Krupp et al 2003, Kaplen et al 2003, also see Halperin, 2008) and all four concluded that they either did not make any difference in the long term resolution of symptoms or the findings were equivocal. Either way, none of the studies could recommend long-term antibiotics for the treatment of chronic Lyme. There is just not the evidence to support this, and the risks are significant: one in four participants in the 2003 Fallon et al study dropped out or had his or her treatment stopped because of serious side effects.

I understand the intense desire to be rid of some of these symptoms and I do not doubt that people are suffering. However, to not only give patients a long-term medication that we know probably does not work, expose them to serious harm because of it, and then charge them thousands of dollars for the privilege is decidedly unethical. We have to do better.
The treatment studies for chronic Lyme disease are studies on cases with late Lyme disease (or late/chronic Lyme borreliosis!!). But not any of those studies are mentioned in the quote above. Why?


Chronic Lyme disease = Late Lyme disease

http://www.lymeneteurope.org/forum/view ... 247#p37829

A quote (ILADS):
acute, early disseminated, and chronic
= early, early disseminated and late!

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Re: Studies on cases with chronic Lyme disease?

Post by X-member » Wed 5 Mar 2014 0:37

But in the references (see link in the post above) we find this:
Ljøstad, U., and Mygland, Å. (2013). Chronic Lyme; diagnostic and therapeutic challenges. Acta Neurologica Scandinavica 127, 38.
Some quotes:
Chronic Lyme is a rare condition caused by long-lasting and ongoing infection with the spirochete Borrelia burgdorferi (Bb).
These recommendations are considered to be good practice points, and not heavily evidence based, as treatment trials on chronic Lyme are scarce.
Chronic Lyme may virtually mimic almost any neurological disorder, and vice versa may patients
suffering from other neurological disorders like polyneuropathy, multiple sclerosis (MS),
amyotrophic lateral sclerosis (ALS), Parkinsonism, and Alzheimer’s disease (AD) be misdiagnosed with
chronic Lyme (63).

Camp Other
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Re: Studies on cases with chronic Lyme disease?

Post by Camp Other » Wed 5 Mar 2014 2:25

X-member wrote:Canada's LD Bill C-442 -- March 3rd 11 am EST

http://www.lymeneteurope.org/forum/view ... 253#p37796

From the post/thread above:
Evidence for Treatment

There have been four studies to date of long-term (up to 12 weeks) antibiotics (Kempler et al 2001(2 trials), Krupp et al 2003, Kaplen et al 2003, also see Halperin, 2008) and all four concluded that they either did not make any difference in the long term resolution of symptoms or the findings were equivocal. Either way, none of the studies could recommend long-term antibiotics for the treatment of chronic Lyme. There is just not the evidence to support this, and the risks are significant: one in four participants in the 2003 Fallon et al study dropped out or had his or her treatment stopped because of serious side effects.

I understand the intense desire to be rid of some of these symptoms and I do not doubt that people are suffering. However, to not only give patients a long-term medication that we know probably does not work, expose them to serious harm because of it, and then charge them thousands of dollars for the privilege is decidedly unethical. We have to do better.
The treatment studies for chronic Lyme disease are studies on cases with late Lyme disease (or late/chronic Lyme borreliosis!!). But not any of those studies are mentioned in the quote above. Why?
Because individual patient case studies are not given as much weight as clinical trials are. That's the way the system works. Those who set guidelines have a "strength of the evidence" scale to support specific treatments, and within those guidelines, clinical trials are said to be a stronger form of evidence to support a specific treatment, especially if they are double blind random controlled trials. Observational studies of a group of patients is informative, but findings from such studies are not as strong as those from double blind random controlled trials. Then individual patient case studies are considered to not be as strong in providing evidence as observational studies are. There's a hierarchy of what's considered "weightier" data there, and strength in numbers - the higher the number of patients (which fit a specific criteria for the study) are shown to benefit from a specific treatment versus placebo, the better.

One thing I've wondered is why in mentioning the four clinical trials for the treatment of chronic Lyme disease (which in these trials actually matches the European definition of post-treatment Lyme disease, but some would argue that some patients in the trial may have been late Lyme disease patients) no one brings up some older studies including the Logigian-Kaplan-Steere study on patients with late stage presentations: http://www.nejm.org/doi/full/10.1056/NE ... le+Results.

quote from the linked Logigian et al study:
"The typical response of our patients to antibiotic therapy supports the role of spirochetal infection in the pathogenesis of each of the syndromes described here. However, our results were not as good as those in previous reports.6 , 7 Six months after treatment, more than one third of the patients either had relapsed or were no better. In addition, more than half had previously received antibiotic therapy thought to be appropriate for their stage of disease and still had progression of the illness. The likely reason for relapse is failure to eradicate the spirochete completely with a two-week course of intravenous ceftriaxone therapy. On the other hand, the patients whose conditions did not improve may have had irreversible damage to the nervous system, particularly since the response to therapy tended to be worse in patients with longer durations of disease. This is reminiscent of far-advanced neurosyphilis, in which the response to penicillin may be minimal.36"
This study is one reason why the IDSA guidelines include a statement along the lines of saying symptoms may continue after antibiotic treatment has ended in late stage Lyme disease. But the Logigian et al study seems to be hedging its bets as stated, with the authors thinking, "well, on one hand, treatment failure MAY have been due to failure to eradicate the infection, but on the other, patients MAY have had irreversible damage to their nervous system on the other hand" and for some reason, over time the emphasis on what's happened has shifted toward the latter half of that thought.

My question (and I think many share it) is when did the mainstream medical view become that late stage treatment failure symptoms were ALWAYS due to irreversible damage - and not because at least SOME patients actually continued to have an infection?

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Re: Studies on cases with chronic Lyme disease?

Post by X-member » Wed 5 Mar 2014 10:10

From the link in the first post (Michael Kruse):
I include the following citations to aid in evaluation of my claims. I suggest Ms. May do the same in any subsequent replies.
This list included this:
Ljøstad, U., and Mygland, Å. (2013). Chronic Lyme; diagnostic and therapeutic challenges. Acta Neurologica Scandinavica 127, 38.
I suggest that this person (Michael Kruse) read the information that he referred to!


Edit to add:

Because I am still very angry on this person for saying things like this:

http://www.huffingtonpost.ca/michael-kr ... 39956.html
CLD should be considered in the same category as IEI-EMF or electro-hypersensitivity, or multiple-chemical sensitivity: they are not recognized diseases and other causes for these symptoms should be sought. Instead, to treat CLD a potentially dangerous protocol using very protracted courses of antibiotics that has shown to make no difference beyond placebo is used.

duncan
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Re: Studies on cases with chronic Lyme disease?

Post by duncan » Wed 5 Mar 2014 16:44

Good points made here. I am fairly familiar with Logigian. Camp Other, I wonder how one goes about proving these days that irreparable damage experienced from untreated or under-treated Lyme is, in fact, due to that case of late-stage or chronic Lyme, i.e, caused by the infection. Particularly in neuro cases...If you have a sympathetic clinician, say an ILADS person, you may be able to make a case. But what if you had to convince an IDSA follower? Or the NIH? How do you prove that damage indicated through imaging or otherwise is traceable to Borrelia, unless that damage was documented as it developed, as the disease progressed?

I fear the concept of even irreparable damage wrought by Bb is hard to prove in today's environment.

dlf
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Re: Studies on cases with chronic Lyme disease?

Post by dlf » Thu 6 Mar 2014 20:41

Campother wrote,
This study is one reason why the IDSA guidelines include a statement along the lines of saying symptoms may continue after antibiotic treatment has ended in late stage Lyme disease. But the Logigian et al study seems to be hedging its bets as stated, with the authors thinking, "well, on one hand, treatment failure MAY have been due to failure to eradicate the infection, but on the other, patients MAY have had irreversible damage to their nervous system on the other hand" and for some reason, over time the emphasis on what's happened has shifted toward the latter half of that thought.

My question (and I think many share it) is when did the mainstream medical view become that late stage treatment failure symptoms were ALWAYS due to irreversible damage - and not because at least SOME patients actually continued to have an infection?
Well, this may not define exactly when the mainstream medical view started to change.......but it certainly defines that change. This is from 2002 and may also contain references that will provide more clues.

I warn you this is a stomach churner, not for the faint of heart or mind. I offer it up in the belief that one must know the origin of much of our cumulative grief.....
The full article as a pdf is available from:

http://www.ncbi.nlm.nih.gov/pmc/article ... 000607.pdf
Contributions of Societal and Geographical Environments to “Chronic Lyme
Disease”: The Psychopathogenesis and Aporology of a New “Medically
Unexplained Symptoms” Syndrome

Leonard H. Sigal1,2,3,4,7 and Afton L. Hassett1,2,5,6,7

Lyme disease is a relatively well-described infectious disease with multisystem manifestations.
Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized
and inaccurate lay media coverage, a new syndrome, “chronic Lyme disease,” has
become established. Chronic Lyme disease is the most recent in a continuing series of “medically
unexplained symptoms” syndromes. These syndromes, such as fibromyalgia, chronic fatigue syndrome,
and multiple chemical sensitivity, meet the need for a societally and morally acceptable
explanation for ill-defined symptoms in the absence of objective physical and laboratory findings.
We describe factors involved in the psychopathogenesis of chronic Lyme disease and focus on the
confusion and insecurity these patients feel, which gives rise to an inability to adequately formulate
and articulate their health concerns and to deal adequately with their medical needs, a state of
disorganization termed aporia. Key words: aporology, chronic Lyme disease, Lyme disease,
medically unexplained symptoms, misdiagnosis, psychological, psychopathogenesis.

Environ Health Perspect 110(suppl 4):607–611 (2002).
http://ehpnet1.niehs.nih.gov/docs/2002/ ... tract.html
Gosh, 2002. Anyone think it is a coincidence that this was after Lymerix was removed from the market?

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Re: Studies on cases with chronic Lyme disease?

Post by X-member » Fri 7 Mar 2014 21:37

Maybe this information belong in this thread?

Deutsche Borreliose-Gesellschaft e. V.
Diagnosis and Treatment of Lyme borreliosis


http://www.borreliose-gesellschaft.de/T ... elines.pdf

A quote:
In the early stage, i. e. in the first 4 weeks after the start of infection, a failure rate of 10% is to be expected with antibiotic treatment (121/135)
In the chronic forms, it is significantly higher at up to 50%. (30/31/52/55/74/99/121)
Even earlier studies referred to the problem area of chronic Lyme borreliosis and the limits of its susceptibility to treatment (31/55/59/61/62/65/92/94/121/138)
In all these studies, the duration of treatment was generally limited to a maximum of four weeks. Considerable therapeutic failure rates occurred under these conditions, even with repeated courses of treatment. (78/82/90)
The duration of treatment is of decisive importance for the success of antibiotic treatment.

There are now a few studies available which provide evidence of the positive effect and the safety of long-term antibiotic therapy.(25/26/27/30/36/44/46/51/52/81/144)

The limited effect of antibiotic treatment is documented in numerous studies: Pathogens were cultured even after supposedly highly effective antibiotic therapy.(63/74/81/96/119/120/122/139/147)

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