Who are the top American CFS/ME specialtists and their locations please.

[Billt]

Will your son be seeing Dr. Kaufman (he sounds great!) or someone else?

I started this thread in the hopes that I'd find a good doctor close to Ontario, Canada but no such luck. I'm still in the process of trying to evaluate if the long distance travel is doable for me. Florida with Dr. Klimas will be less distance but they aren't taking any new patients and just trying to get on the wait list is impossible..nobody answers the phone

We will be seeing Dr. Kaufman, but I think the other Dr is good as well. I choose OMI because some of the members here have been there and have been impressed. The trip will be hard both physically and financially but I must get him somewhere that we can begin to get some help ! Florida is MUCH closer to me, but like you I can not get an appt there. Some of the other Drs mentioned on here also have very long waits to see them. So between good recommendations and a fairly short wait time we decide to try Dr. Kaufman. Hope this helps... Bill

 

[zrobinso]

We will be seeing Dr. Kaufman, but I think the other Dr is good as well. I choose OMI because some of the members here have been there and have been impressed. The trip will be hard both physically and financially but I must get him somewhere that we can begin to get some help ! Florida is MUCH closer to me, but like you I can not get an appt there. Some of the other Drs mentioned on here also have very long waits to see them. So between good recommendations and a fairly short wait time we decide to try Dr. Kaufman. Hope this helps... Bill

Hey guys. Just a heads up.. I just booked an appointment with Dr. Kaufman at OMI yesterday. He is booked out over two months, the earliest Thursday (have to do Thursday because I'm a travelling consultant and can only do end of weeks) he could see me was June 11th so If you are wanting to schedule an appointment I wouldn't waste too much time in doing so.

 

[zrobinso]

I was very impressed with Dr. Kaufman! He took a great deal of time talking to my husband and me. He was very thorough and kind. He listened and asked questions. He tested me for SIBO there in his office and then drew 20 vials of blood. He is checking for autoimmune diseases, virus, and genetic mutations. I will talk to him again in by phone in about two weeks. I feel he will definitely be worth the flight half way across the county. ;-)

You mention that he tested for viruses, do you know if he tested for both active and "stealth" viruses? I'm gearing up for my appointment and doing as much research as possible to be prepared. I've been run through the ringer with a myriad of tests but I'm just recently diagnosed with CFS and am new to the idea of a pathogenic cause to these symptoms.

 

[zrobinso]

Also, sorry to blow this thread up with my posts, but I have been looking into Cpn (Chlamydia Pneumoniae) as a potential infectious cause of what is going on. In my research I found out I had actually met the lead researcher in Cpn, Dr. Stratton, when I was a student at Vanderbilt (just graduated in May) so I emailed him. He currently isn't seeing patients, to focus on research, but he recommended this doctor for CFS and Fibro issues. I know, I know, Fibro and CFS are different, but the methodology this guy uses seems really effective and the causes he investigates are consistent with what other top CFS docs look into. He is based out of Sacramento and accepts any PPO insurance for visits and tests (Dr. Kaufman had a flat 455 dollar first appointment)

http://www.fmtlc.com/philosophy.html

 

[Daffodil]

after pursuing viral causes for yrs unsuccessfully, i am also now wondering about CPn....

 

[SOC]

Hey guys. Just a heads up.. I just booked an appointment with Dr. Kaufman at OMI yesterday. He is booked out over two months, the earliest Thursday (have to do Thursday because I'm a travelling consultant and can only do end of weeks) he could see me was June 11th so If you are wanting to schedule an appointment I wouldn't waste too much time in doing so.

Just so's ya know... booked out two months is nothing for an ME/CFS specialist. Most are booked out 6 months to 5 years.

 

[Sushi]

He currently isn't seeing patients, to focus on research, but he recommended this doctor for CFS and Fibro issues.

He is based out of Sacramento and accepts any PPO insurance for visits and tests

Dr. Powell is controversial. You might want to research what his patients have to say about him.

 

[zrobinso]

So consensus is to stick with Dr. Kaufman? Based on what I've read on this forum, which has seemed to be the most helpful resource I've had. Every doctor website is going to have good stuff offered and "patient reviews" that are positive.

 

[ebethc]

How does Kaufman compare to Montoya?

I've heard that Montoya is very focused on prescribing anti-virals... Is Kaufman inclined to do the same? My joint pain, etc., started long before I got mono.... I do have EBV, and it's made me worse, but is not by any means the foundation of my problems.. I don't want to go to a doc who is all about viruses as the root of CFS. My problems may be rooted in weak adrenals & poor digestion, which I am continually trying to address but I need HELP.

thanks

 

[ebethc]

Dr. Kaufman at Open Medicine Clinic in Mountain View, CA. I just saw him on Monday and he is absolutely wonderful.

How long did you have to wait for an appt? I'm on the waiting list for Montoya, and can't get in before this November! thanks.

 

[Billt]

Anybody know if you can bring in a recorder with Dr. Kaufman ? We are coming from a long way away and I don't want to get home and not remember exactly what he said. My memory is not what it use to be....

 

[Gingergrrl]

Anybody know if you can bring in a recorder with Dr. Kaufman ? We are coming from a long way away and I don't want to get home and not remember exactly what he said. My memory is not what it use to be....

@Billt Yes, you can bring a recorder and at my last appt, he actually encouraged me to record it b/c I had so many questions!

 

[Billt]

@Billt Yes, you can bring a recorder and at my last appt, he actually encouraged me to record it b/c I had so many questions!

Thanks Ginger. I will need it ....

 

[Snookum96]

That's good information..thanks! The drive from my place to Detroit is one hour, hanging around in the airport another 2hrs and flight would be 3 hrs. Long day but doable. If you were in my shoes (ill 3 yrs) and have had no testing done re: virology or immunology, would you go to straight to Florida and forgo Dr. Lerner?

I will be going to Toronto to see a doctor who is not a specialist but who can test me for hormone deficiencies such as cortisol and DHEA and whatever else he feels appropriate. Those blood tests would be paid for with by the provincial health plan so that is a bonus. He also does a CFS panel and EBV testing (I must pay for those) to see if a virus is present or has been present at one time but he doesn't test for actual titers. His treatment is via infusions but I'm not sure I would go that route as I'm not sure of the success rate.
So first toToronto. Then I'll decide upon further travel outside of Ontario.
Thanks

I'm also from Ontario and just wondering who that doctor is. I'm on a few wait lists but the shortest one is 8 months and was hoping to meet with someone at least familiar with CFS to get some testing done.
Thanks!

 

[Chris from Tampa]

Have a look at the bottom of this ME/CFS roadmap document.

As a new guy, this is the single most useful post I've read. Trying to navigate among the threads, some of them dozens of pages long, has been intimidating. This is the first really helpful thing I've seen. Thank you, thank you, thank you.

 

[zrobinso]

Just saw Kaufman last week. Waiting for a lot of tests to get back but tested positive for SIBO and treating with a specific anti-biotics. I can already feel that helping.

I highly recommend going to Kaufman.

 

[Billt]

Just saw Kaufman last week. Waiting for a lot of tests to get back but tested positive for SIBO and treating with a specific anti-biotics. I can already feel that helping.

I highly recommend going to Kaufman.

Glad they seem to be helping. Did not seem to make a difference for my son, but we have to retest to see if it's gone or not. Also seems that everyone test positive for this. Must be a common thread. Wonder if anyone was SIBO negitive ??