I saw a fairly well known CFS specialist yesterday

Discussion in 'Fibromyalgia Main Forum' started by Mike, Mar 12, 2003.

  1. Mike

    Mike New Member

    and came away disappointed. I don't what to give his name (it's not Cheney, Lapp, or Bell) but he has published books, sits on boards, teaches, and contracts for the military.

    Initially it started out pretty well, I wasn't going to go into very much details of my CFS but he wanted to know the whole story (he seemed very interested). Then he laid out the following plan.

    1. See a psychologist that he recommends for at 3 appointments.
    2. Eliminate sugars, fruit juices, caffeine, alcohol, and large meals.
    3. Take Evening Primose Oil twice a day.
    4. Jog at least 4 miles a day.
    5. Treat with antidepressents (Elavil, Trazadone, etc.) for sleep and SSRIs for activation.

    After that I asked his opinion on the following:

    1. B12 injections. Will not prescribe. No proof that it works.
    2. Why Cheney and Lapp has B12 injections at the top of the list for fatigue. He doesn't pratice medicine the same as them.
    3. Candida. Would not treat. No proof that it causes problems.
    4. Micoplasma. Will not treat. No proof that it causes problems.
    5. Tests that would be taken. Only standard blood and possibly urin and sedimentation tests.
    6. Prozac trial in Holland that indicates that Prozac doesn't help. He indicates that the person that ran the trial doesn't understand CFS so the trial is flawed.
    7. Why when I was taking Elavil previously (I would take the drug for 3 weeks and then stop and then come out of fatigue for three weeks) it helped in such a weird way? He responded that I probably slept longer but the problem was that I wasn't taking the drug when I was out of fatigue (only when I was in fatigue).

    I don't know why we spent so much time going over my CFS history because it appears that I would be treated exactly the same as anyone else and I could get that information directly from the CDC site.

    He seemed to get quit irritated when I was asking the questions and started repeating his qualifications. When he again stated that he contracted with the military I almost asked whether he was on the Gulf War Syndrome panel that concluded that the 100,000 with GWS was caused by Psychological Stress.

    Instead of paying the big bucks for this doctor, I think I'll go back to my normal doctors (at least I can request treatment from them and they'll prescribe if they don't think it will hurt me).
  2. Shirl

    Shirl New Member

    I got the feeling that you knew more than this well know doctor!

    I agree with you, stay with the ones you are going to now. They seem to be helping, plus they are willing to work with you. This man sounds like he has a 'pat' answer and a 'pat' responsed to each drug he is prescribing too.

    I am surprised to see you on the board this late in the evening!

    I had such a bad morning, I didn't get here till almost 5pm.

    The rib pain, then the fatigue set in, spent the better part of the day in bed with my 'love', the heated mattress pad and the heating pad on my side!

    Feel a little better now, but will have to get off for a while so my I can get my husbands call. Still can't get DSL in the boonies!

    Have a great nights sleep my friend.

    Shalom, Shirl
  3. AJME

    AJME New Member

    Dear Mikie,

    Were you disappointed because he changed his thinking on how to treat CFS/FM?


    Did you just expect more out this person because his books, ETC.

    Looking for clues.
  4. Mike

    Mike New Member

    This post is not from Mikie.

  5. pam_d

    pam_d New Member

    I'm so sorry you had this disappointing experience! I agree with Shirl, it's likely you knew lots more than this guy! I have had the experience of seeing a doctor in CA who "specialized in CFS/FM patients". It didn't take too many appointments for me to realize that she was a caring, helpful doctor, but knew only about a tenth of what I had learned about FM, & was very misinformed about most of it. I soon surmised that she was filling a void in a town that had no other FM specialists----providing a service, but really had very little knowledge about the subject.

    It really is hard to find that very rare doctor who is knowledgeable AND really listens.

    And, Mike---jog 4 miles a day!!! If we could all do that, we wouldn't be at the doctors asking for help! Aspiring to get some exercise is one thing, but come on!

    Hope you do find some doc willing to listen & help,
  6. AnnetteP

    AnnetteP New Member

    I can relate to your experience.

    A couple of years ago, after months of reading both online and in books, I contacted a naturopath whom many recommended. I came away feeling he wasn't touching the surface, but I went along with his simple CBC and thyroid panel and a coupld of other tests (hair and saliva). Within days of following his protocol I got sicker and NO it was NOT a healing crisis. I tried to stay with it, but had to eliminate a few things. On a follow-up visit I INSISTED he run the great smokies stool test for candida and bacteria; he reluctantly did. When they received the results, I got an emergency letter from his office stating I need to go in ASAP and that they needed to completely redo my program!

    I decided I was NOT throwing more good money after bad, and I didnt't return. Months passsed and I got scared when I had a strange incident happen. I immediately called Great Smokies and asked for referrals in my area; from there I interviewed the receptionist of my current dr. I asked two major questions: 1. What emphasis does she place on the great smokies stool test and candida and 2. Does she prescribe Armour thyroid? I was determined to not fall victim to another bogus alternative dr. and to be an informed consumer.

    The receptionist answered that she insists that almost all her new patients take this stool test and that she does prescribe Armour. That was enough for me to make the appointment. Now, I would probably ask many other questions, but at the time those were my two most important issues.

    When the appointment finally arrived, I was so pessimistic and thought I would walk away again, disappointed. Boy was I wrong! I have been most pleased with my dr. and her approach to my treatment. She reviewed my lab results from the other dr. and immediately started jotting down information. Her recommendations were completely different than the first dr.'s, and they both looked at the same results! Plus, she ordered lots more tests and really got to the problem.

    I was so excited when I learned about mycoplasmas, a few months after my first visit with her; that was nearly a year ago. When I walked into her office, prepared to ask for this test, I saw a pad on her desk for one of the labs that does it. She quickly said sure let's do it (she had just returned from an ACAM meeting and this was discussed there) and we drew the blood that day!

    So, my advice to you is call a lab you are interested in using and ask them for referrals. Then, ask around; this is a good place to ask as well as health food stores. The good integrative dr.s have great repuations. After I made my appointment I asked someone at a health food store and my homeopathic vet; both gave this dr. praise.

    Good luck,
  7. beckster

    beckster New Member

    I'd fire him immediately if not sooner. Geesh, the crap we take because docs are ignorant and refuse to take the time and make the effort to get updated and educated, like you yourself have done. He should pay you! Unfortunately, this is common with us; it takes time and effort and money and patience to find someone to work with; which can be very hard especially when one feels, and IS, so sick. It is so deflating.. But keep on finding the best doc for you, and let us all know how it goes. Beckster

  8. teller7

    teller7 New Member

    If I wasn't so exhausted I would have laughed when I read that the dr told you to jog 4 miles a day. I could hardly get off the couch to get to the computer. How long have you had this? Is is CFS? I was diagnosed a few weeks ago and I'm sick of it already
  9. Mike

    Mike New Member

    No it did not start with a T.
  10. Mike

    Mike New Member

    I've had CFS for 3 1/2 years now.

  11. Mike

    Mike New Member

    I expected someone with a little more imagination with someone so well versed in CFS/FMS. He is very conservative in his approach. I also expected that I would be given my own plan (especially since he wanted to know every detail of my history) instead of a photo copy of his other patients even though we may have different symptoms.

    Finally, he is quit expensive and I expected more than what I can easily find on the Internet. Also, I believe that he thinks the problems are mostly mental.
  12. Mikie

    Mikie Moderator

    I am so sorry that your appt. with this "expert" turned out so badly. This is exactly what has kept me from going to any of these high-priced docs. If any one doc had all the answers, pretty soon, word would get out and everyone would be following his or her protocol and having great results.

    Also, I'm sorry people mistook you for me in their responses. Between our brain fog and name similarities, it's bound to happen.

    Love, Mikie