posted
Has anyone done this lyme evaluation? What tests were done? Any break through info?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I did it...honestly, I was so sick at the time that I barely remember a lot of it. This was over 5 years ago.
They are mainly collecting data for their research, so the info benefits their research as much or more than it benefits you, if that makes sense. So it wasn't necessarily founded with the intent of treating patients, it was founded to gather information.
I'm not one for lots of tests, I feel like they just tell me what I already know....that I'm sick, my brain is bad, etc.
The only good that came of it is that they recommended my LLMD to me, but honestly, I'm not sure if they do that for most people (I was really sick, and it was mentioned to us kind of "off the cuff,") and they might not be giving referrals like that anymore.
So just keep in mind, to my knowledge, they don't treat.
And they might not run Igenex testing, but I can't recall.
All that said, I fully support what they are doing....but if you have limited funds or time, etc...it may not be the best use of your time. You are better off seeing a good LLMD.
Though, their SPECT is top-notch, so if you do want a SPECT, that is the best place to get it done, because their radiologists reading them are Lyme literate.
Posts: 4590 | From Midwest | Registered: Jun 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I had an evaluation done in 2005. It was very thorough. Lots of blood drawn (16 tubes I think). Spect scan done. I'd already had a brain, c-spine and lumbar spine MRIs done prior to the appt.
For me it was useful. However, at the time they were not testing for various viruses like HHV-6, EBV, and enterovirus (which I ended up having all of them). SO....make sure you get tested for those either at Columbia (if they test for those now---you might ask in advance before deciding to go there)...or get tested elsewhere.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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