I am interested in trying some of the things he mentions, like the Ionamin (Phentermine), Florinef for blood pressure, Kutapressin, etc.
They are also doing some cutting edge stuff with a drug called Ampligen.
Anyways, I realize some of these drugs only address the symptoms (Ionamin) in a way (though it does help possibly the cause), but most of the treatments do address physiological causes of fatigue (treatments address sleep disorders, dysautonomia, viruses/bacteria, immune modulation, hormones).
And I realize none of this would be addressing my Lyme. But my LLMD is supportive of me doing this in conjunction with Lyme treatment....they think that I should look into anything that could help me, even if it is just something to give me enough energy to stay on top of my Lyme treatment (take supplements, use sauna, exercise, etc). And they believe there is more at work than just Lyme/co's.
My main question is, has anyone heard of this place or know of any good/bad experiences?
It's all out-of-pocket, like LLMDs.
Thank you!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Member # 15759
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Anyone have an opinion on whether this would be a good way to go? Open to opinions.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Dawn in VA
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posted
I used to be a cell bio and worked on CFIDS. I'd recommend Charlotte. I have a very well-educated good friend/former lab mate who has CFS/FM and says that's the best place in the Eastern US.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Hoosiers51
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posted
The only thing that is making me hesitant is the price. It will be $385 an hour, and the first appointment will be 2-3 hours.
Personally, that annoys me. (my LLMD did not cost anywhere near that much). I get the impression they "educate" you on your disease....and I really don't want to have to listen to the doc talk and talk while I'm paying for it, watching the clock.
I really don't see why they would need to see me for that long.
So I'm wondering if I'd be better off trying to see a cardiologist for the dysautonomia, an endocrinologist for the hormones, a sleep specialist to give me Xyrem, etc etc (all from docs that take insurance).
The only problem is that I'm worried those doctors might not be as thorough as this center in Charlotte.
Any thoughts on the cost? That is what is keeping me from pulling the trigger on the appointment. I have to put down a $350 deposit that will go towards the first appointment.
If it was just $385 out of pocket for an hour, I'd be fine with that. I just question why this person needs that much time to evaluate me. If they do testing, I think it would be unethical to charge me for office time while doing testing, etc.
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