"What can we conclude about the net impact of these 4 randomized controlled studies conducted among patients with persistent symptoms after treatment? The two Klempner studies were negative while the Krupp study was positive on the primary measure of fatigue upon which the patients were enrolled."
"The Fallon study showed a moderate improvement in cognition favoring the ceftriaxone group but this improvement was not sustained except on some of the secondary measures."
"The simplest conclusions would be: a) some studies show clinical improvement in response to repeated antibiotic therapy while others do not; b) IV antibiotics in particular are associated with serious risks; and c) other treatment approaches need to be investigated that are safer and lead to larger and sustained improvement."
I sent this message to them via their contact information.
To whom it may concern, If you are going to provide studies that are supposed to help one make reasonable treatment decisions, the least you can do is include the analysis showing serious flaws in those studies. They are significant and should be considered.
I spent considerable time trying to determine if I would benefit from treatment for chronic lyme. Had I read your treatment page I may never have received the proper treatment. I can say from my own experience that treatment made a huge difference for me. My sister and brother are not so lucky. One sister died and my brother is not expected to live much longer. I blame the treatment controversy for the early loss of their lives and for the loss of many thousands of others who believe the authors of these deeply flawed studies.
Your information is not complete and thus is not providing a service but a disservice. Please tell the whole story by providing the credible and useful information mentioned in the link above.
posted
The big problem with Columbia is that patients raised millions of dollars to fund the research center, but the directors of the group try to be independent -- can't be done. You either believe in chronic lyme or you don't. And we all know that data can be interpreted in multiple ways.
I have been very disappointed with their organ donation program. Very hard to communicate and little follow-up. In trying to find out what has been done with hubby's specimen's, I finally got an email that only said the researcher was in Europe and out of the country until the end of November.
No answer as to whether a report has been written or any testing done on hubby's brain. So now the other reearchers that have expressed an interest in doing additional testing also have to wait as well.
I know many who have been disappointed in the 2nd opinion program as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote: The big problem with Columbia is that patients raised millions of dollars to fund the research center, but the directors of the group try to be independent -- can't be done.
You either believe in chronic lyme or you don't. And we all know that data can be interpreted in multiple ways.
I went to Columbia for their Lyme 2nd opinion service. They are good people.
There is a desperate need for good researchers pushing the science of the controversies as they do but without being "labeled" such that they lose their credibility.
There are some doctors/researchers that will never change their minds. There are others and younger ones that can be influenced by good science.
If Dr Fallon and Columbia pulled away from the mainstream too far, we would lose a credible influence that is dearly needed.
They are among the few researchers doing studies designed to expose the issues that still have credibility.
Be thankful of their effort as few are doing the real science that the mainstream will accept that test the limits. They do need to report the results honestly - even if its not what some would like.
Without researchers like Fallon's group that retain their credibility, it will take far longer before we turn the corner. If new young researchers get all their input from the standard Lyme researchers, nothing will ever change.
They need to ride the credibility line.
Posts: 53 | From Jupiter | Registered: Aug 2013
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I am glad if you found the 2nd opinion program useful. I have heard different from other people -- comments such as what a waste of $5000. And yes, I do have a personal bias -- they would not even see my husband -- said he was too sick to take part in their program. And this was over a year before he died when we actually thought he had a chance to beat the chronic babesia. And we had catastrophic insurance coverage so all bills would have been paid 100 percent.
The Fallon study was important, but as we all know since antibiotics were tested for such a short period of time in that study as in others the patient improvements were not long lasting.
There is just so much research that needs to be done.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
elara - If they truly were presenting unbiased scientific data I would not be complaining but it is clear that they are not.
I understand the credibility issue. That said, Columbia does have a reputation to maintain so why are they touting terribly flawed studies as a basis for making treatment decisions without at least providing the statistical analysis of those studies?
I find their presentation disingenuous.
Bea - Sorry to hear of the trouble with Columbia donation program and of your experience with them. I remember hearing of yours and quite a few others who did not have good experiences at Columbia.
Greta and surprise - I won't hold my breath for a response but if I get one I'll be sure to post it.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
miyamotoi- Thanks for providing links. It will take some time to read them.
Let me be clear. I am NOT critisizing Dr. Fallon, I am critisizing the Columbia Research center treatment page. There is no author listed on the page that I could find.
If Dr. Fallon did write the treatment page for Columbia Research Center then why isn't the information in the links that you provided included along with the informaion provided here? http://www.ncbi.nlm.nih.gov/pubmed/22922244
The treatment page makes it look like those studies should be used to make treatment decisions.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
A good example of the gravity of the flaws in those studies is the Kaplan et al. study. In order to show cognitive improvement, the participants would have had to perform better than healthy individuals. Hows that for developing a study that is sure to show what you want - that retreatment does not work? Unless the participants could perform better than a healthy person, the study results showed no benefit.
Don't you think ppl should know that if they are to rely on these studies to make such a serious decision about their health?
The other big issue that is not talked about is that many of the older studies did not take into account that one can have a bullseye rash and NOT be infected with a strain that causes illness. This makes those studies useless since saying that short term abx cured lyme disease when the person never had it to begin with really skews the results. This information was pointed out in the book "Cure Unknown".
PS Forgot to mention that apparently a number early studies included study participants because they had a bullseye rash. A bullseye rash alone was considered a sure sign of lyme disease, no testing necessary. Not so anymore of course. Terry
posted
I was disturbed by the crucial gaps in information around those studies too. Thank you for writing, Terry.
The critiques of these studies are real mainstream science, published in reputable mainstream journals. To include them is good scholarship. To omit them is outdated scholarship.
Posts: 431 | From New England | Registered: Dec 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
In Pamela Weintraub's Cure Unknown, she includes Fallon's inpute quite a bit.
Yet, when I heard him interviewed on NPR, he was hesitant to say that lyme can cause mental disorders. He sort of beat around the bush about it.
My sense was that he has to please the mainstream to some extent to keep the money coming for research.
But I don't think you can live in both worlds. At least not forever.
I hope the time is right for researchers who truly understand chronic lyme to not be afraid to pull away from the mainstream and make the honest results of unflawed studies available for all to read.
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