Visit to Nancy Klimas' CFS Clinic

dsdmom

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Well I just returned Tuesday night and am trying to get over the exhaustion of traveling to Miami but wanted to at least post a quick note about my visit. My appointment was on Monday - I met with Dr. Chahine (?) for probably an hour or longer to go over my history. I had sent many records ahead of time but he wanted to hear it from me which I appreciated. Then he sat with Dr. Klimas to discuss my case before they called me in.

There were 3 other patients there that day. One woman was just getting saline and I think 2 others were having their exercise tests before meeting with Dr. Klimas. I did not have any other tests during this trip since I have already had autonomic testing (and tilt) and am unable to do an exercise test at the moment because of some joint issues.

The nice thing is that I am not a 'clean slate' by any means as far as testing goes because of long-term steroid use and other issues but Dr Klimas and Dr. Chahine were very willing to work with me as is.

So when I met with Dr. Klimas we conferenced in my PCP which was great so she could hear everything directly from their mouths and I didn't have to try to explain everything. Really right now we aren't making any changes until they get the blood work back in a month. But the big things we discussed were sleep, immune system issues and infections. It will be interesting to see what my blood work shows while on the prednisone. Nancy did say that I could take immunovir and/or ldn while on prednisone so that was good to hear. She did say that LDN is not an immunomodulator and that there will be a paper coming out soon by somebody who finally pinned down the mechanism behind how ldn works. I will be interested to see that when it comes out.

A few words about XMRV- Dr Klimas is keeping samples of her patients blood to test once there is a test she thinks is good enough. I did ask her if she thought xmrv was going to pan out and she said she did think so but at a lower percentage than what was originally reported.

After my appointment I went out for lunch and then went back for some saline - which really did not end up helping me any. I suppose that is individual but I had assumed that it would since it seems to help so many people and I have such low bp. I was hoping it would have helped.

I will have a follow up call with Dr Klimas in about a month to go over my test results. I will have to go back in about 6 months after that for follow up blood work. Overall it was definitely worth the trip and I would encourage anybody who is considering a trip to Miami to make it! Of course they do not take insurance so that is disadvantage but if you can swing it it's worth it!
 

serenity

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thank you for taking the time to post.
i am glad you thought it was a good visit.
i had yet another bad doc appt today & i sure get tired of those.
(a guy who told me "you sound like all the women they brought in during training at med school with all these vague symptoms".) bleh

this worries me a bit...
"I did ask her if she thought xmrv was going to pan out and she said she did think so but at a lower percentage than what was originally reported."
can someone else smarter than me tell me what you get from taht? :)
 

gracenote

All shall be well . . .
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thank you for taking the time to post.
i am glad you thought it was a good visit.
i had yet another bad doc appt today & i sure get tired of those.
(a guy who told me "you sound like all the women they brought in during training at med school with all these vague symptoms".) bleh

this worries me a bit...
"I did ask her if she thought xmrv was going to pan out and she said she did think so but at a lower percentage than what was originally reported."
can someone else smarter than me tell me what you get from taht? :)
I'm not someone smarter than you, but I do have this information that I posted back in February that was based on communication from Dr. Mikovits. (These are not direct quotes.)

It is becoming more apparent that the virus in not being found in large numbers in the blood.

Some who were expected to be positive have tested negative. Perhaps those who are the least sick and the most sick may not have free antibodies because it is bound in immune complexes.

It may be possible for some to have an immune defect that prevents them from expressing antibodies at all. They would then require culture testing, or possibly tissue biopsy to find the infection.
 

serenity

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oh ok, just further testing - not that it wont be there, just maybe not in blood. yes? ok gotcha
i think - thanks.
 

aquariusgirl

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hi dsdsmom's

am I right in thinking you saw her privately rather than at the Uni of Miami?

Can you say how long it took you to get in to see her?

thanks
 

dsdmom

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oh ok, just further testing - not that it wont be there, just maybe not in blood. yes? ok gotcha
i think - thanks.
Danib - this was not the impression that I received from Dr. Klimas. I got the impression that she was saying that she thought it would pan out for a lower percentage than the 67% originally reported.

hi dsdsmom's

am I right in thinking you saw her privately rather than at the Uni of Miami?

Can you say how long it took you to get in to see her?

thanks
I did see her at her new private clinic. It was very easy to get into. I think maybe a 2-3 week waiting period?