Neurologist or Immunologist?? Is it worth consulting?

Discussion in 'Fibromyalgia Main Forum' started by tennisnut, Aug 11, 2008.

  1. tennisnut

    tennisnut New Member

    Hi there
    I don't believe in re-inventing the wheel - so if there are folk out there that say "don't waste your precious energy" or yes, this one or that one I would love to hear from you.

    There is such a big investment of "self" every time we start up with a new doctor and I don't know if I have it in me at present. I really don't have anyone (medical) as my doctor isn't interested in investigating my condition further. She would give me a referral, however, if I asked for it - I think.
  2. spacee

    spacee Member

    You know a doc can be good or not and it doesn't have to do with their "specialty".

    What are you interesting in finding out? Viruses..then that would be an immunologist or infectious disease. The doc might be willing to prescribe antivirals and if not, you might want to try the transfer factors that are back at Prohealth.

    A neurologist would not address the above at all. If you are having uncontrolled headaches, trouble walking a neurologist might help.

    My feeling that I was losing my ability to walk was actually being caused by Transfer factors have helped me get improvement there. I can now exercise.

    You current pcp could order the viral tests if she is willing.

    HHV6 A& B are the three "biggies" but there are others.

    A CD57 would be able to help you know if you have been exposed to Lyme. IF would definitely need another doc then. and that would be possibly a whole new post!

    My current doc has not come up with a test to order in at least three years. I have had a good bit of tests done but they were all my idea and he order. Of course when all of them have come back out of range...then it is still up to me to find a "treatment" which I do through this site.

    I actually saw a psychologist yesterday to discuss my illness. He wants me to see a neurologist because of my sound/light sensitivity is so disabling. And he named the one he wanted me to see. So, I will see him. Maybe he can tweak my klonopin or something. Will see.

    I understand the investment of "self". The psychologist first choice was for me to see a doc who only sees CFS patients. He understands our problems with other docs. But as you know, they are not on every street corner. So that is not a possiblilty for me.

    Hugs to you. It is difficult to be alone in understanding this DD.

  3. ladybugmandy

    ladybugmandy Member

    hello. unfortunately, you will be lucky to find a neurologist who takes CFS seriously. even though it's a brain condition, i haven't been able to find one who cares about it at all. i have heard this from others, too.

    i have never seen an immunologist and it would probably be worthwhile, but if i were you and i could not see a CFS specialist, i would try an infectious disease or possibly internal medicine doctor (many have both specialties).

    good luck
  4. tennisnut

    tennisnut New Member

    and LadyBugmandy thanks for responding. I'm pretty confused as to how to from here and I get tired of "driving" my doctor.

    Spacee can you explain Transfer Factors to me?
  5. ladybugmandy

    ladybugmandy Member

    hello. may i ask what condition you have? is it CFS or FM? if so, many good doctors are listed here:

    good luck
  6. Meg1710

    Meg1710 New Member

    Hi TennisNut,

    Personally I saw two neurologists just after getting ill last year and they were both useless. One basically inferred that I had a somataform illness.

    Recently however like so many of us 'driving our own diagnosis' I went to an, ME/CFS/FMS believing GP elsewhere, and asked for a Mycoplasma test to be done along with some other 'bug' testing. The Mycoplasma Pneumoniae titre came back quite elevated.

    When I talked to my asthma nurse at my regular clinic visit and told her the whole unfolding of what I had found out and showed her the test results she said: "I feel quite sick, in fact I feel totally ill about what you have just told me." She also said that the medical team including herself, the GP and the respiratory physician had failed me completely, by being too blinkered in the way they had been looking at my symptoms for almost two years and she apologised profusely and got up and gave me a hug!

    And listen to this!!She also said that it was not my job to have to find out what was causing my health issues but their job... and they had failed!!!! That sure was validating!

    She then called my regular GP into the appointment and told him that they had all "missed the boat" and gave him a copy of my two Mycoplasma tests I had done six weeks apart from independent doctors.. He was clearly taken aback.

    An hour or so later he called me on my mobile phone and said he was "most disturbed" by the conversation we had had that morning. He said he had got out all my notes after I left and made a timeline to see when this could have started.

    I will be seeing him again this Friday so will continue the conversation more deeply. I have had some treatment already but will be insisting on regular titres now to make sure this bug which has obviously become chronic in my system and has affected lots of organs IS KILLED - once and for all!
    [This Message was Edited on 08/12/2008]
    [This Message was Edited on 08/13/2008]
  7. ladybugmandy

    ladybugmandy Member

    wow. your post blew me away. that rarely happens at doctor's offices. they are usually too busy trying to cover their azzes to apologize to a patient! bravo for them!

    have you been tested for viruses?

  8. Meg1710

    Meg1710 New Member

    At the time I had the first test for the Mycoplasmas in June this year, the CFS/FMS doctor also ordered: CMV, Legionella, Psitticosis, Chlamydia Pneumoniae, Ross River virus, Q Fever, Murray Valley Fever - I think that was it.

    I haven't had EBV (Epstein Barr), Brucella, the Herpes Viruses or Rickettsia done. Any others that should be done?

    When I asked the doctor I went to see, was there any need to test for other things once they had found the Mycoplasma he felt "no". He said "let's deal with this one first". I also had borderline Legionella levels and active CMV - which is probably less significant.
  9. spacee

    spacee Member

    Transfer Factors were discovered (not invented) about 1949. What was discovered was the immunity that human mothers give their babies when breast feeding through colostrum (precursor to the milk) strangely enough can be done with cows and chicken to humans. This "transfer ability" is called Transfer Factor.

    So, since antibiotics were available, TF's took the back seat. They have been studied since their discovery but not sold. 4LIFE holds the patent on them but sells the right to other labs to research, develop and sell Transfer Factor products.

    So, at least 2 labs in the US have been able to produce TF's that "target" viruses and mycoplasms. Well, the FDA did not like them using the word "target" so the they closed one of the companies. That scared those of us who depend on TF's for the quality of health we have. One is Rich Carson who started this site.

    So, most of the information about targeted TF's disappeared from the internet at the closing of the one lab. Prohealth stopped selling them. Now, they have been brought back but you have to talk to a Customer Service Agent to find out which TF targets which virus.

    I take two and they target a bunch of stuff. If you will look at the Transfer Factor Board (here) go to top, click on Message Boards, scroll down to Transfer Factor, there is a lot of info. I am at a level where I take the two TF's for a week, then don't take them for a week. That helps to bring the cost down. AND the immune system needs to be kept guessing so it is good to mix it up. I may go two weeks without them this time. Once I went a month and did fine but that is the longest I have gone.

    Hope this answers some of your questions...There are a lot more people taking them then you realize, they are sold through doctor offices.

  10. padre

    padre New Member

    I have been to a neurologist and an immunologist. Both were helpful and supportive. The best? The best was a physician's assistant who did his homework, worked with me and really made a difference. I think it is the person not the speciality. Good luck.