How far do you travel to see a doctor treating your CFS?

Discussion in 'Fibromyalgia Main Forum' started by LongStruggle, Feb 6, 2007.

  1. LongStruggle

    LongStruggle Guest

    I'm just wondering how far people are traveling to get help? And if long distances, how often do you go? Also, if your dealing with a top-notched CFS specialist then please give his/her name and where they are located.
  2. foggygirl

    foggygirl New Member

    I went thru SOOO many doctors that were so horrible--didn't know what they were doing; thought I was a hypchondriac (which I'm NOT); made me worse, etc., that when I found a good one, the distance was not an issue. Of course, my daughter has to drive me to the appointments, but luckily I have a very supportive family.

    His name is Dr. Steven Katz from Fairless Hills, Phila., PA.

    He has never once been condecending or treated me with anything but respect, and I will always be grateful to him.

    Good luck in your search.

    Foggygirl
  3. Slayadragon

    Slayadragon New Member

    Dr. Dale Guyer, Indianapolis.
  4. keke1972

    keke1972 New Member

    245 miles, Dr.Susan Levine
  5. keke1972

    keke1972 New Member

    Dr.Levine is in Manhattan
  6. Aghllw

    Aghllw New Member

    My dr is about 2 miles from my house, and 15 from work. I count that as a HUGE blessing cause driving is tough for me (us).

    Lisa
  7. munch1958

    munch1958 Member

    I'm very interesting in finding another doctor and would go anywhere. These distances are one way:

    Detroit FFC -- 300 miles 6 trips since March 06
    Wisconsin Dells -- 232 miles 5 trips over 9 years
    Whole Health Chicago -- 87 miles 1 trip (may not be a 2nd!)

    People thought I was CRAZY for seeking out a world class endometriosis surgeon and making 3 trips to Wilkes-Barr, PA in 1991, 1992 & 1993. My endo was completely removed. I've never had it return.

    Like CF/FM, endo is another one of those diseases with
    "no known cause, no known treatment and no known cure." Since I seem to collect those kinds of diseases I'm sick of hearing that! My success with getting rid of my endo inspires me to keep on searching for help for my CF/FM.
  8. Spring123

    Spring123 New Member

    I am also thinking of changing dr.s and Fairless Hills is not far from me. Has he improved your symptoms for CFS? What has he done for you?
  9. LongStruggle

    LongStruggle Guest

    I'm interested in hearing more about Dr. Katz. I have a brother in Philadelphia. What has Dr. Katz done for you?
  10. LongStruggle

    LongStruggle Guest

    How does Dr. Guyer help you? I know he tests for a lot of viruses. Is that his main emphasis? Where does he stand on treating the heart symptoms?
  11. foggygirl

    foggygirl New Member

    Aside from his unfailing compassion and actually LISTENING to me--not just hears me but listens.

    Unfortunitely I have side effects to nearly all perscription drugs. I can't tolerate any anti-depressants, though that's not my problem. Most drugs affect me in the opposite way they are intended or give me other radical problems.

    Mostly, he doesn't have that over-inflated ego problem that most docs have and he is open to try my suggestions or alternate therapys.

    I've also had a huge problem with my horrible long-term disability insurance carrier and he has stood firm for me, rather than buckling like many of them do. When I asked him if he'd support me for Social Security he didn't even hesitate and said "Absolutely!!"

    I wish with all my heart that I could tell you that he has cured me of this devestating CFS/FM/IBS, but unfortunitely nothing seems to be working for me--and I've tried a lot of things. But again, he is more than willing to work with me with my suggestions or approaches. Maybe hopefully) we just haven't hit on the right solution yet.

    I hope I haven't discouraged rather than incouraged any of you for trying him, with my blunt honesty, but I think my case is a little more severe and sudden than most. I was slammed with a very severe case of mono at 55, and my CF/FM hit me like a freight train, rather than the more typical gradual onset.

    Whatever you decide, good luck in your search--I know it's a long road to find a good doc.

    Good luck and good health.

    Foggygirl

  12. LongStruggle

    LongStruggle Guest

    Is your doctor knowledgeable, on his own, re: CFS or are you supplying the research and he's willing to try it?
  13. foggygirl

    foggygirl New Member

    He's an infectious disease specialist and also specializes in CFS and I think FM. I believe his usual approach with most CFS people is with perscriptions, but since I can't tolerate most perscriptions, he researches my suggestions and works with me in areas he feels are safe or might be beneficial, or that he thinks might be helpful and not just hype. He admits that he is not an herbalist so is not qualified to perscribe them as such.

    Hope this answers your question.

    Foggygirl
    [This Message was Edited on 02/06/2007]
  14. deliarose

    deliarose New Member

    500 miles.
  15. LongStruggle

    LongStruggle Guest

    It's always helpful to see what others are doing. Would appreciate more responses.
  16. ephemera

    ephemera New Member

    foggygirl, how long have you been going to dr. Katz?

    while waiting for the doc, have you met anyone else in his office to talk with?

    sometimes, you get the best sense of a doc in the waiting room just sitting & talking with other patients

    best wishes with your search...
  17. foggygirl

    foggygirl New Member

    I've been seeing Dr. Katz for almost a year.

    I've not had much chance to talk with other patients in his waiting room because he seems to schedule his people well so that there aren't many people waiting at the same time. He's an infectious disease specialist and I suspect that he does that deliberately.

    My first appointment with him he kept his distance from me, didn't shake my hand, and wore rubber gloves. I immediately thought he was cold and anti-social, but now believe that with his experience as and infectious disease doc, that he was just cautious.

    After all my tests were done and I didn't have some awful foreign disease like leprosy or something, he then was more friendly and not cautious about being near or touching me w/o gloves. I'm almost anal-retentive when it comes to sanitation in public (using a paper towel or sleeve to open public doors; never set on a public toilet seat, etc.) so I know that if I were in his shoes I'd be the same.

    To answer your question, no--I haven't talked to any of his other patients.

    Good health to you.

    Foggygirl
  18. fungirl2100

    fungirl2100 New Member

    My pain doc is about 45 minutes away. My old doc used to be 15 mins away. Let me just say the extra time to see this one is well worth it. This doctor really cares about me & my well being.

    I am sorry to hear how far some of you have to travel.

    your friend,
    fun ;)
  19. brushlady

    brushlady New Member

    I travel one and one half hours each way to see my doctor. This is the 22nd dr. I have seen and the farthest from my home but so far the best. I was reluctant because of the distance but I have learned that it is worth it to see a specialist. This doctor specializes in fibromyalgia and fatigue.
  20. LISALOO

    LISALOO New Member

    8 hours for Detroit FFC.

    Tried 3 doctors close, so hopeless, they were supposed to be smart about CFS but knew nothing.