The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Michigan, who can help?

Discussion in 'ME/CFS Doctors' started by Ewa, May 23, 2015.

  1. Ewa

    Ewa

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    I'm looking for a doctor who has a good knowledge about CFS and POTS and really can take care of me in Michigan.
    I am too weak to travel right now.
    Any suggestions?
    Please, help.
     
  2. halcyon

    halcyon Senior Member

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    Dr. Lerner would be the closest well known CFS doctor to you.
     
  3. Ewa

    Ewa

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    I've read mixed or not good opinions about him.
    Is anybody know him?
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    @Ema can probably help you. She's seen him and lives in the Midwest.

    If you look around you may find Her comments.

    Dale Guyer? He's in Indiana i think.
     
  5. SOC

    SOC

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    Three members of my family have seen him and all had large improvements under his care. Whether he's the right doctor for you depends on what you're looking for and what you need.

    If you're looking for emotional support, he's probably not your guy. If you're looking for a cooperative doctor-patient relationship, he's not your guy. If you're looking for alternative treatments, he's not your guy. He's old, and old-fashioned. He has a my way or the highway attitude. He doesn't use supplements much, if at all.

    If you're looking for a doctor in the midwest who has an excellent chance of improving your condition, and you believe pathogens are a significant part of your problem, then he's the best chance you have.

    I found him to be kind, and very personally invested in improving the health of my family members. He gave us exactly the treatment we needed at the time and argued successfully with our insurance company to get it.

    If you live in the midwest, and are unwilling or unable to travel, Dr Lerner is really your only option. You just have to be willing to take him as he is.

    I've heard of Dr Guyer in Indianapolis, but what I've heard doesn't encourage me to see him. He seems to be more into fibro and chronic fatigue than the neuroimmune illness ME/CFS. However, if you want hormone and nutritional therapy, or other treatments not as commonly used by top ME/CFS specialists, he might be worth trying. Just be prepared for the fact that he is expensive (or so I hear).
     
    AndyPandy and Sushi like this.
  6. Ewa

    Ewa

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    Thanks,
    That's what I've heard about dr. Lerner.
    I don't believe that pathogens are the only one reason. I am afraid that treating only pathogens is a short term solution.
    Can you tell me how your family members are doing after finished treatment, long term?
    Thanks again.
     
  7. SOC

    SOC

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    I agree that pathogens are not the only problem in ME/CFS and longer-term treatment is needed. That is one reason why we've moved on to a top ME/CFS specialist who has a broader treatment plan. However, that requires travel by air once or twice a year.

    My uncle started out with mild ME/CFS and appears to be cured (and I don't believe there's a cure for ME/CFS at the moment ;)). My daughter went from a 4/5 to about 9 under Dr Lerner's care. I'd say she's in remission or near remission. I was the sickest and was sick the longest of all of us. I went from a 1 to 4/5 under Dr Lerner's care. I've since moved up to 6/7 under my new doctor's care.

    My family are all in the viral subset and antivirals were a huge help to us. Once we got that problem under control, it was easier to move on to a top specialist farther away. If Dr Lerner is close to you and you don't feel you can travel, seeing Dr L may be a good first step. At the very least you could go to him and get the testing, evaluation, and proposed treatment plan and then decide where to go from there. He can see you sooner than most top ME/CFS specialists can, so you could get all the testing done while you are waiting to see another specialist.

    To be honest, it's physically easier to travel by air (using airline and airport disability services) to see our top specialist once or twice a year than it was to drive half a day to see Dr Lerner every 4-6 weeks. YMMV
     
    AndyPandy likes this.
  8. Ewa

    Ewa

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    Thanks,
    It makes sense. I have last question.
    I have really bad POTS (bother me the most) and insomnia. Most prescribed sleeping pills for insomnia are usless for me. I wonder if dr. Lerner will be able to take care of these problems, too.
     
  9. Ema

    Ema Senior Member

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    On the other side of the state is Dr Ruth Walkotten in Muskegon. I've not seen her myself but she was recommended to me at one point.

    She suffered herself with some form of CFS as well like Dr Lerner.
     
    SOC likes this.
  10. SOC

    SOC

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    He does treat POTS if it's severe. I don't think he's as good with the more subtle forms of dysautonomia, but it doesn't sound like that's your problem. I don't remember if he does much for sleep because I was already getting treatment for my sleep problems when I started seeing him. My guess is that he does treat sleep problems, at least in a basic way. Maybe someone else knows more. @Ema?
     
    Sushi likes this.
  11. Ema

    Ema Senior Member

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    I don't know about Dr L and sleep. My instinct is to say no because I know of one of his patients who had to see someone else for her sleep prescriptions. But maybe that was her choice. I really couldn't say unfortunately.
     
    SOC likes this.
  12. Daffodil

    Daffodil Senior Member

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    i had a friend who could not get his sleep medicine from dr. L, but it was a very strong medication.

    i would go to dr. L if your antibodies to the herpes viruses are high.

    he also will treat bacterial infections but they would have to show up on his testing.....i am not sure if he is doing the newer lyme tests like the LTT ELISPOT.

    also, he would be very old at this point....not sure how he can practice at this age!
     
  13. Ewa

    Ewa

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    Thanks a lot.
    I'll think about him once again. Still not sure at this point. I'd prefer somebody more open minded and open for more holistic, alternative approach. It looks like traveling or him. I will search more about dr Ruth Walkotten.
    Thank you.
     
  14. SOC

    SOC

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    I think we would all prefer someone more open minded. :) Unfortunately, we midwestern beggars can't be choosers.

    Let us know what you find about about Dr Walkotten. A superficial Google search shows good reviews. :thumbsup: She's almost as old as Dr L -- both well past retirement age. :wide-eyed: Looks like we aren't going to have any ME/CFS-knowledgeable doctors before too long. I hope they both keep practicing as long as they reasonably can.
     
  15. Ewa

    Ewa

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    Google isn't helping about dr. Walkotten. And her age ... can she keep herself updated and work at this age?
    Right now I'm confused. I only know that dr Lerner is not for me.
    Maybe I decide to travel.
     

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