What would you do?

Discussion in 'Fibromyalgia Main Forum' started by twal, Jan 9, 2003.

  1. twal

    twal New Member

    Hi everyone! Happy New Year!

    I started seeing a hypnotherapist/psychologist about 2 months ago. I brought her all of my past medical records over the last four years...that's how long I've been sick.

    Anyway, I'm currently seeing Dr. Sam Donta who is nationally known for Lyme Disease. I got tested for Lyme, but the results were negative. He feels a lot of people that think they suffer from CFIDS really have Chronic Lyme Disease. The symptoms of CFS/FMS and Lyme Disease are so similar! He has me on an antibiotic regimen that has not worked at all. I see him again in March, and he may start giving me antibiotics intravenously.

    Exactly a year ago, I went to Pennsylvania to see Dr. Gerald Poesnecker. He diagnosed me with CFS and while I was down there, I took some tests. The results of my RNase-L test were a 24.00. The average person has between 0.0 and 0.4. This has been the only thing I have tested positive for after seeing MD's for four years.

    After reviewing all my material, my psychologist said she thought I was obsessed with my illness. The reason was for all the information I knew about CFIDS.(I do a lot of research, because I want to get better) She told me to stop doing research and also to stop going on message boards. I had stopped doing it, but I went to this site today and read Dr. Cheney's article and I saw a reference about RNase-L in there. I get so excited when I see anything about RNase-L, because it is the only concrete evidence I have.

    I have been seeing my psychiatrist for four years now and he has me on Zoloft, Klonopin and Ambien. He has been great with me! Telling me to get out, but don't over-do-it. My psychologist is totally opposite. Telling me to go out and find a job (I am currently taking three online classes, which is equivalent to five college classes. That is more than enough for me!) I can see she wants me to get out and just live a regular life, but I'm afraid of getting a terrible relapse.

    My questions:
    Should I drop my infectious disease specialist and try to find someone that deals with CFS and knows about RNase-L?

    What would you do about the psychologist? She does have some good points, but makes me feel like I am worthless or just pretending to be sick at times.

    Thanks for reading.:)


    [This Message was Edited on 01/09/2003]
    [This Message was Edited on 01/09/2003]
  2. joannie1

    joannie1 New Member

    I don't know so much about the infectious disease Doctor but as for the psychologhist. I would almost consider finding another one to be honest. My Doctor feels totally opposite. She encourages me to do the researching and reaching out for support. My impression your Doctor is telling you to ignore the disease and it will go away. I hope this helps you some.
    take care and good luck.
  3. Mikie

    Mikie Moderator

    I think obsessing and researching are normal responses when one is diagnosed with a serious illness for which there is little know and no known cure. I obsessed and spent days on end researching until I found some treatments which started helping me. I do think it is a good idea to try to bring some balance into one's life, but until we get some satisfactory info and treatments, it's hard to do.

    Love, Mikie
  4. layinglow

    layinglow New Member

    Pro-Activity in any disease, is known to have positive effects. Cancer patients who are well informed, take a proactive stance in their illness, and are willing to fight, have a much higher success rate.

    I believe, that those who, actively seek information, manage the course and treatment of their own cases with a physician as an advocate in these syndromes, are also the better for it. (There are even some who do not need the services of physicians to manage their own illnesses because they have invested the time, researching to discover what helps them, and don't need or want RX's, etc.)

    I think seeing a Cfs Specialists who is well versed in RNase-L, might be a great step, for you to undertake, especially with your RNase-L test results being abnormal. You have no positives for Lyme, and the antibiotic treatment is affording you no improvement. Why not seek out treatment for that which you know is abnormal?

    [This Message was Edited on 01/09/2003]
  5. teach6

    teach6 New Member

    I would defintely look for a doc who specializes in CFIDS. FRom reading your profile I see you are from Rhode Island. I checked the doctor referral from thei site and came up with these two names:

    Providence, RI
    Wendy Clough, M.D.
    Infectious Disease Specialist
    Rhode Island Hospital Medical Foundation
    2 Dudley Street - Suite #370
    Providence, RI 02905
    Tel: (401) 444-3487
    ("She's a very good CFS & FM doctor. She's very knowledgeable of both and is up to date with all of the new findings.")

    Warwick, RI
    Edward Reardon, D.O.
    1050 Warwick Avenue
    Warwick, RI 02888
    Tel: (401) 467-6210
    ("Very attentive in treating FMS,CFS and other related symptoms to FMS.")

    I hope you are able to get in with one of them or another doc who specializes in CFIDS.

  6. PaulMark

    PaulMark New Member

    todd: why couldn't poesnecker help you? is that the natural med. clinic in PA that's is supposed to be so goodf or treatment of cfs????

    i've been to several infect disease spec. and none helped me cheney is my dr. god bless paul Mark in KY
  7. catgal

    catgal New Member

    Hi Todd~~I've been a psychotherapist for 25 years, and every therapist has their own philosophical, educational, and theorectical approach to therapy and treating clients. If you brought the same client with the same presenting symptoms to 10 different therapists, you would not only wind up with varying different diagnoses, but each and every one of them would have a different approach to treating that patient. Not to mention, that as therapists we also bring to our practice our own personality types, upbring, conditioning, and belief systems.

    ANY therapist that makes you feel "worthless" is not the therapist for you. And whatever "good points" this therapist may have is counter-productive if you leave the session feeling "worthless".

    Therapy can be a highly effective support system and guide for dealing with issues, but the significant part of therapy is the relationship/repore you have with your therapist. Do you feel the therapist is knowledgeable about the issue or issues you came to see them for? Do you feel comfortable and safe with them? Do "they" have a good session or do "you"? Who does the most talking? Do you feel a sense of compassion and heartfelt empathy from them? Are you getting out of the therapeutic relationship what you went there to get? Are you improving? How do you feel when you leave their office? Are you getting your money's worth? Do you feel that the therapist has a good grasp of "your" concept of your situation or are they focused on their own concept of your situation? Do you feel encouraged or discouraged when you leave the session? Overall, how beneficial has the therapeutic relationship been to you? And a good yardstick to use in measuring the quality of the therapist's services is to ask yourself--if I had to quit seeing THIS therapist and stop my therapy sessions, would it have a negative impact on my well being at this time?

    As with any therapist, I too come from my own philosophical, educational, and theorectical background. And, it is my "belief" that any therapist who discourages their patients to stop learning, researching, and educating themselves about their illnesses isn't worth your time. And one who makes you feel "worthless" has missed the mark. There is a considerable difference in being obsessed about being sick as opposed to being obsessed about getting well. I do not consider doing all you can to help yourself being "obsessed with your illness". I consider that being self-motivated, pro-active, and a healthy spirit. There needs to be a "balance" in your perserverance, but to ignore it is as unbalanced as "compulsively" obsessing over it.

    I would encourage you to find a therapist with a holistic approach to therapy. One that is knowledgeable about your issues, competent in working in these areas, and one that is an essential part of your overall health care.

    And I agree with the others--see a provider that specializes or has expertise in CFIDS and RNase-L. Regroup, and I hope you will be getting beneficial results soon. Best Wishes, Carol....