Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dr. Komaroff retiring next year from seeing patients

Discussion in 'ME/CFS Doctors' started by soxfan, Jul 23, 2014.

  1. soxfan

    soxfan Senior Member

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    I just received a letter in the mail from Dr. Komaroff stating that as of next June he will no longer see patients.

    I haven't seen him in a couple years so it doesn't really impact me. I am not sure if he will continue on with research as it didn't mention any of that in the letter.

    I will say that the few times I saw him he was very kind and listened to everything I had to say. Unfortunately he really didn't offer me much in the way of treatments as he didn't believe in high doses of anti-virals. He also wasn't sure if I had an active infection or past infection.

    I am sure his current patients will be sad to lose him as their doctor....
     
    Firestormm, maryb, Gingergrrl and 2 others like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    A little off topic but this thread has got me thinking about it. I wonder if the specialists we are loosing due to age are being replaced at the same rate? (for where I are, this doesnt seem to be the case). Its a big concern that most of our ME specialists are getting aged. We could well loose at least half of the specialists we have now in the next 10 years.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @soxfan Where does Dr. Komaroff practice? Is he with one of the larger CFS institutes or private practice?

    @taniaaust1 I have thought about that too and am hoping that the CFS specialists are all training med students and residents who will be our future experts (but not really sure how much this is happening?)
     
    soxfan likes this.
  4. soxfan

    soxfan Senior Member

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    @Gingergrrl43 - Dr. Komaroff practiced out of Brigham and Women's Hospital in Boston. Even when I saw him in 2011 it took 6 months for me to get in. I believe at that point he was already starting to wind down his practice and only saw patients a couple days each week.

    He also sent me a list of a couple doctors that specialize in CFS and one was in Boston who was a rheumatologist and then 2 in New York...so there aren't many in that area. I live in NC now so even if I wanted to find another doctor it would be down in this area.

    Also he did have several assistants when I was seeing him and I know for certain one went on to medical school and I am not sure about the others. They all worked extremely close with him and were in the room during my appointments. Hopefully they will take over the research as well....
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @soxfan If you live in NC, isn't that where Dr. Cheney and Dr. Lapp practice? I could be wrong about this though! Glad to hear that Dr. Komaroff was training assistants and hopefully ALL the CFS doctors are doing this so someone can continue to carry the torch once they retire.
     
    soxfan likes this.
  6. soxfan

    soxfan Senior Member

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    @Gingergrrl43 - I really haven't had a chance to check out doctors here. The stress of moving has finally caught up with me so I am laying low for a little while. I kind of figure since I was seeing Dr. K and he didn't feel like he had much to offer me then maybe there really isn't much anyone else can do....maybe after a while I will check out some doctors.
    I live near Duke and they actually have a "mystery" disease center where people go who really don't know what is wrong with them and they try to figure it out. Dr. K never came right out and said I definitely have CFS as I didn't fit the exact criteria but I know I do since I can relate to this forum....
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @soxfan The "Mystery Disease Center" at Duke sounds interesting although I am not familiar with it. Are you thinking about going there since your doctor never said you had CFS? It sounds like you do from your descriptions but if you have any doubt, it would be great to rule out other things. Is Duke (in general) familiar with treating ME/CFS?

    Note: If we want to go further with the discussion of Duke and its "Mystery Disease Center," another thread would work better. :)
     
    Last edited by a moderator: Jul 25, 2014
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  8. soxfan

    soxfan Senior Member

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    @Gingergrrl43- I am not sure what is really wrong with me. I have been treated for Lyme and Bartonella in the past. I suffer mostly from chronic fatigue which is 24/7. Although I am able to do many physical activities I still relate to what people say on this board. It has been 10 long years with really no diagnosis...I see my PCP in October who is affiliated with Duke so I am going to talk with her about this.

    It is really hard being in a new state and trying to find a caring doctor who is willing to help...
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    @soxfan Just curious, what did Dr. Komaroff diagnose you with? Did he feel that you had CFS due to Lyme & Bartonella? Maybe he can speak with your new PCP or send records if you think that might be helpful?
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    isnt the other Dr K mark ll , training new cfs/me docs?? Kogleneck, spelling ???
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @heapsreal I'm not sure who you meant by "Mark II" but Dr. Montoya trained Dr. Kogelnick who then brought in Dr. David Kaufman to OMI.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Mark ll as in kogelneck is the second Dr K, kamaroff being the first Dr K.
    I thought I read Dr K ll was now training doctors in his practice in treating cfs? ? I could be wrong.
     
  13. soxfan

    soxfan Senior Member

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    @Gingergrrl43- I have all my records from Dr. Komaroff. He sends you all the labs and writes up a summary about the appointment. He basically said he couldn't definitely diagnose me with CFS as I didn't fit the CDC criteria but I had a lot of the symptoms of a person with CFS...just not the common ones.

    He did another Lyme test in which it was positive but he felt antibiotics would not help at this point. I also had really high titers to EBV and HHV6 but he felt they were not active infections so A/Virals would not benefit me.

    I did try florinef but it didn't do much except make me bloated. I only saw him 3 times and could tell after the third visit he had no clue what to do for me.

    He never really gave me a diagnosis of anything....actually the third appt. I had with him was a total of FIVE minutes long....

    He also never said anything about Lyme/Bartonella causing my ongoing symptoms.
     
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  14. GypsyGirl

    GypsyGirl

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    @soxfan - could you post or pm me the "mystery" disease center you mentioned? I live in Durham and it'd be great if I could unravel my mysteries here. (Ha)

    If you haven't already discovered:
    Dr. Cheney is in Asheville, NC.
    Dr. Lapp has a primary office in Charlotte, and a secondary office in Raleigh.

    I had a good experience with Dr. Alan Spanos, in Chapel Hill, NC. He does not profess to be a specialist, but is much more ME/CFS literate than any other doc I've worked with. He diagnosed me with ME, and explained the illness' mechanics (and the political climate of establishing diagnosis). He's very upfront... After a handful of appointments, he set up what is still my backbone of treatment, said that was the extent of what he knew and that my primary care doctor could follow it. It was a surprisingly kind and honest assessment.

    If you have adrenal issues, Dr. Jagadeesan of Raleigh is great. A neurologist with an understanding of functional medicine, a rare combination.

    Also, welcome to the south! (sorry about the humidity) :p
     
    kristysmiles likes this.
  15. soxfan

    soxfan Senior Member

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    @GypsyGirl- Hi...sorry it took me a while to respond. The "mystery" disease center is at Duke Hospital. I read an article in the local newspaper about it and was very intrigued. My primary care is out of the Duke medical system so she would be the only way to get me in. I am sure it is a long process but I am willing to give it a try.

    I have an appt. with her coming up in December so will inquire about it then. I will see if I can dig up the article to give you some more information.

    I can tell you that I have been dealing with some sort of illness since 2004 but still really have no "real" diagnosis from any doctor I have seen in the past ten years. I still feel that what ever hit me back then has just left me with permanent damage to my brain because all my symptoms are neurological in nature.

    I can do more than most with CFS/ME but way less than normal people so I am somewhere in between. I appreciate the doctors information and will keep them in mind.

    As you can see from my posts I was a patient of Dr. Komaroff's and even he never truly diagnosed me with anything....or ever offered any type of treatments. I think because he wasn't sure what was going on with my odd symptoms.

    I could type out pages of tests...doctors....medications I have been on and nothing has ever been of any help with my current symptoms. We have spent well over 20-thousand dollars out of pocket and I am still sick....

    I have to say I can do much more on a daily basis then most here but I ALWAYS suffer afterwards....entirely after mental exertion. I can do almost anything physical to a degree.

    I will look up that article if I still have it someplace and get back to you....I love the South and have always wanted to live here....having my son...daughter in law and new granddaughter close by helps as well.
     
  16. GypsyGirl

    GypsyGirl

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    @soxfan
    I thought I'd responded to this... I logged in today to see if you'd responded, and realized it was me who didn't respond. (Agh! to myself)

    Yes, if you dig up that article, please share. Even if it wasn't personally helpful, I'm curious/would like to be aware as to what kind of "mystery disease" center Duke has. Most of experiences with Duke have been that I'm far too mysterious for them. ;-)

    I was lucky to get a diagnosis of M.E. about a year after the initial flare, although the diagnosis hasn't affected the way most docs treat me. But it gave me a starting point to research. When I was better than now, I spent time "hunting" down doctors who might have a piece of the puzzle, and that's pretty much what I'm working with now.

    At the end of the day, I feel like I'm mostly treating myself - reading up on the latest research & info before my doctors can get to it.

    The local doctors who have helped with a piece of the puzzle include a PCP, a hematologist, two neurologists, an ENT who treats a lot of MCS & mold/environmental illness, a GP who specializes in pain, and a gyno (who's sort of into integrative medicine). I won't include the docs who didn't help. :p If you ever want to follow up with one of the docs I've mentioned, I'm happy to pass on the info.
     

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