Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
They do not mention the name of the study or the authors, but it was done by some statisticians, which is a refreshing approach. will post the link to the study below.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's that time of year for the full media propaganda push. They are really getting out in front of that this year.
With few exceptions, most likely the regular mass market journalists will comply as usual with just talking with IDSA and not ILADS.
Propaganda, I say - not because lyme is not serious or can be long lasting but --- this "PL" stuff is because the IDSA doctors fail to offer proper complex multi-tiered treatment for
lyme -- but also fail with regards to even mentioning the other infections that usually go with lyme and, for which, antibiotics that treat lyme do not treat those, such as Babesia, etc.
They fail treatment so they are pretending it's all Post Lyme - not chronic infection that it really is and, for which, there IS treatment with ILADS doctors LLMDs or LL NDs - or even some other avenues that help with support.
This propaganda push is to scare people into accepting the next phase of lyme vaccine likely soon to come on the market.
And, since they failed to admit the terrible mistakes and damage of the last vaccine, I would be very wary of any new one. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I do not believe the authors of this study are involved with any vaccine propaganda.
"Competing interests
Mayla Hsu, Ph.D. is the Director of Research and Science at Global Lyme Alliance, a nonprofit organization.
Harriet O. Kotsoris, M.D. was formerly associated with Global Lyme Alliance on a volunteer basis, and from time to time advises one or more other nonprofit organizations in connection with tick-borne diseases. The authors declare that they have no competing interests.
The views and opinions expressed here are those of the authors and do not necessarily reflect the official policy or position of Brown University or Global Lyme Alliance."
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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posted
Most long-term Lyme patients will recognize the name of A Delong; a few years back she helped refute the NIH Lyme RCTs.
Of course, the article is scary, or it should be. Regardless, this is a needed shot of re-enforcing data of the alarming spread of people left debilitated because of Lyme and co-infections.
But we don't need to be a statistician to do the math of 20% remaining sick.
I just wish they would not use the PTLD label as it connotes something it has not been proven to be, i.e., cured. It's like that old rule: You break it, you buy it. But here, you use it, you accept it.
I think they should just assume it's late stage Lyme, if only for the patients, but also because they have not proven it is not Lyme in those 20% or more.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
But the use of post Lyme disease syndrome will keep docs reading the article, where they might dismiss it and move on if they see the term "chronic Lyme disease".
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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posted
Maybe so, but what is their takeaway about the disease? It certainly shouldn't be called Post Lyme Disease Syndrome because they don't know it's post Lyme. And PTLDS is only a slightly nuanced way of suggesting the same thing, ie, it's likely NOT Lyme.
Since there is a strong possibility we're talking late stage Lyme, that should be their takeaway: These patients suffer from late stage Lyme refractory to abx, and we need to marshal resources to deal with this existential threat.
Irrespective of that, I agree that the article should and will generate much needed attention to the inherent long-term risks Lyme poses.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Thanks, Duncan!
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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