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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Not family doctors but specialists who treat only CFS/ME and where their clinics are.
Dr. Kaufman at Open Medicine Clinic in Mountain View, CA. I just saw him on Monday and he is absolutely wonderful.
My family had major improvements under the care of Dr Lerner. The only caution I would give is that his treatment protocols are somewhat limited compared to other top specialists. His main focus is pathogens. He doesn't do much to test or treat immune, OI, or endocrine issues, for example. Also, he insisted that we see him in person every 4-6 weeks, which was hard, but that might only be true of patients on Valcyte.I've heard lots of great things abut r. Kaufman but he's too far for me to travel.
I'm not sure that antivirals are what's needed in my case but perhaps if and when I can travel again, I'll pursue Dr. Lerner. (listed on the roadmap). He's located in MIchigan is the closest state to where I live in Canada.
Have a look at the bottom of this ME/CFS roadmap document.
That has been a concern of mine. But like you said, I could get the testing done and decide what to do from there. How does he compare to the other specialists with concern to which/how many viruses he tests?The only caution I would give is that his treatment protocols are somewhat limited compared to other top specialists. His main focus is pathogens. He doesn't do much to test or treat immune, OI, or endocrine issues, for example.
This, would definitely be a problem for me.Travelling 2x/ yr by plane for a few hrs would be better. I'll have to look @Hip's roadmap and do some research. Who do you see now?Also, he insisted that we see him in person every 4-6 weeks, which was hard, but that might only be true of patients on Valcyte.
My problem with those lists is that they tend to be largely populated by fibromyalgia doctors who are either not interested in treating ME/CFS or think fibro and ME/CFS are the same thing (a pretty outdated idea now) and therefore won't give you appropriate treatment -- they mostly want to deal only with pain. I wasted a lot of time checking out doctors on these lists hoping not to have to travel so far. It was a total bust. My feeling nowadays is: If you haven't heard about them here at PR, they're probably not going to do you a lot of good. Some, maybe; a lot, probably not.This is a pretty cool document @Hip Is the co-cure good doctor list now located or archived somewhere else?
I found a doctor database on ProHealth recently.
He does pretty extensive pathogen testing -- all the herpesviruses, Lyme, coxsackie, C. pneumoniae, etc. I don't know if he does the most progressive Lyme tests, though. You'd get the majority of pathogen tests most other top specialists would order, although there are always likely to be a few differences. KDM does more extensive tick-borne illness testing, for example.That has been a concern of mine. But like you said, I could get the testing done and decide what to do from there. How does he compare to the other specialists with concern to which/how many viruses he tests?
Now we see Dr Rey (Dr Klimas' associate) at INIM. We're very happy with the treatment we get from her. If you can fly into Ft Lauderdale and see an INIM doc at the Davie office (as opposed to flying into the Miami airport for the Kendall office), the travel isn't bad at all. The Ft Lauderdale airport is pleasant and easy to manage and the office isn't very far from the airport (5 minute drive) and you can stay at an airport hotel to minimize travel.Who do you see now?
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?Now we see Dr Rey (Dr Klimas' associate) at INIM. We're very happy with the treatment we get from her. If you can fly into Ft Lauderdale and see an INIM doc at the Davie office (as opposed to flying into the Miami airport for the Kendall office), the travel isn't bad at all. The Ft Lauderdale airport is pleasant and easy to manage and the office isn't very far from the airport (5 minute drive) and you can stay at an airport hotel to minimize travel.
I probably would go straight to INIM unless I was confident I had a herpesvirus and felt strongly about getting Valcyte. Don't get me wrong -- Dr Lerner is great. I just think INIM or OMI gives you a broader range of treatment and is easier in the long run.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?
Good luck with that! If you're seriously considering seeing either Dr Lerner or an INIM doctor, I suggest you don't waste your money on the CFS panel and EBV testing. They're probably not going to tell you anything useful and you'll have to pay for the better testing you'll get from the specialist. So save your money for the helpful tests.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
Did he offer you some help ? only sak because I am taking my son there next monthDr. Kaufman at Open Medicine Clinic in Mountain View, CA. I just saw him on Monday and he is absolutely wonderful.
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. ;-)Did he offer you some help ? only sak because I am taking my son there next month
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. ;-)
@Billt very glad you are taking your son there. Great choice.
Thanks, please keep us informed on your progress
Not sure if you are asking me, but it was very easy. They are about 1 month out on appts. They have sent paperwork to us that we need to fill out and send back before we go. We were set for April but Dr had jury duty and we had to resetThat is really great news! How difficult was it to get an appointment?
Will your son be seeing Dr. Kaufman (he sounds great!) or someone else?Not sure if you are asking me, but it was very easy. They are about 1 month out on appts. They have sent paperwork to us that we need to fill out and send back before we go. We were set for April but Dr had jury duty and we had to reset