check this out and tell me what u think
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When I try to determine the genuine nature of a group that I'm not familiar with, I generally look at their home pages, etc.
Take a look at the universities involved: JH, Harvard, etc. - the photo. So we know they don't understand the complexity of lyme. Yet, keeping that in mind . . . they are looking for a specific thing to occur with this study and that could be good, perhaps.
But, I approach with caution [and, were more energy in my power, study exactly which scholars are involved in the study vs. those from these institutions who are so very opposed to lyme, careful not to paint them all with the same brush].
Take a look at this site's treatment page and their references. While they list LymeDisease.org and LymeNet as references, they omit ILADS, etc. and have a link to the CDC.
On testing, they leave out key detail. On their treatment page, also some major errors.
They suggest limiting treatment with antibiotics in line with the IDSA approach and lean toward the term Post-lyme, so clearly, it seems they may not understand persistence and need for combination approaches.
Coinfections are not mentioned.
I'm not sure what to make of this group. There seems some very good here but also some things that are of concern.
Still, even if they are not as fully LL or TBD-literate it's clear they know there is a problem it maybe their approach could be a major key.
Wonder what those who live right in their neighborhood &/or have gotten to know this group think? -
[ 05-04-2015, 10:37 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I saw a presentation from the Stanford group at a lyme and tickborne disease conference I went to in 2014. I think they have lyme patients best interests at heart, but I have to agree with Keebler -
they are stuck on the IDSA viewpoint that neuro lyme is rare and also believe strongly in antibiotic refractory arthritis from lyme and they stated they have difficulty finding samples of Babesia infected patients for experiments.
Any time a research group is involved it seems like 95 percent of the time they rely on the "experts" from other Universities to form their opinions and research directions.
They did actually seem to believe bartonella could be a coinfection though which was surprising.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TuTu,
A photo with about 4-5 persons on a stage - at one of their main tab pages - there are representatives from JH, Harvard and one other that usually are very much against lyme. I assumed by their presence, they are supporters / involved with this group.
Look around at all the tabs, all their events / board members, cohorts, etc. and a better picture comes into view.
It can be little misleading, though, to see a great photo of a well known musician (Hall) performing at a fund raiser there who has been a good voice for lyme. I wonder if even he understands how the IDSA is not really for those with lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BEA, so glad to have your perspective which is one that I absolutely trust. Even for those who are kind of, sort of, maybe . . . . if they are so closely aligned with the severely narrow IDSA "understanding" of lyme / TBD, ultimately, that most often is a major roadblock. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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