Infectious Disease Doctors

Discussion in 'Fibromyalgia Main Forum' started by LongStruggle, Feb 1, 2007.

  1. LongStruggle

    LongStruggle Guest

    Has anybody been really helped by an Infectious Disease Doctor? If so, what has he/she done for you.

    I saw one recently who was absolutely clueless about all the latest research for CFS. He claimed to know all about CFS but didn't even know the top researchers/clinicians in this area. His treatment was to provide emotional support. He didn't even believe in testing for viruses. I would have thought that an Infectious Disease Doctor would be the most likely to be testing for viruses.

    What have the rest of you been experiencing with this medical specialty.
  2. spacee

    spacee Member

    but he was a godsend in giving me a heart med for my tachycardia. And he knew all the docs so he was a very good source for the best ENT doc that my kids and I desparately needed.

    Other than that he was good at testing the immune system and ruled out a bunch of stuff.

    The things that have helped me I have learned through the CFIDS Journal (before internet) and, now, this site. Then I ask my pcp to let me try them. He will let me try just about anything if I type it out so he can have something for my chart.

    Spacee
  3. KMD90603

    KMD90603 New Member

    I see an infectious disease doc, and he was the one that officially diagnosed me with CFIDS. Other than diagnosing me and running a few blood tests, he has done nothing for me so far. I have an appointment to see him next friday, because I'm in another bad relapse. I really hope he can do something for me, as I cannot take another day with swollen glands, sore throats, and feeling feverish.

    Kim
  4. wrthster

    wrthster New Member

    Hi,

    Most of them our worthless and don't take our conditions seriously. I am lukcy to have finally found one (a needle in a hay stack) who is really very good. I have a lot of infections and he has left no stone unturned. He has done a tremendous amount of testing. MRI's, blood test, you name it. But I think the reason he is more in tune is because he is a Lyme Disease Specialist. So that coupled with the Infectious Disease background has let him go much further than any other of the 50 doctors I have tried. I don't know if he can help me at this point, but he is certainly doing everything humanly possible, and for that I am truly greatful!
  5. LongStruggle

    LongStruggle Guest

    Thank you to all that responded. It seems that there are a lot of Infectious Disease doctors who are clueless, but I'm glad to see that some have been helpful.

    I've never been tested for any viruses since I haven't had doctors knowledgeable about CFS. It would sure be nice to see one of the known experts in CFS, but so many of them are so expensive or way too far away.
  6. Bruin63

    Bruin63 Member

    I am fighting a bad infection, and I didn't want to go to the hosp.
    So she put me on a couple of Meds. that of course make you worse before you get better.

    I have had a couple of panic attacks and called her office about 3 tims so far.
    Everytime she has returned my messages,. calls me in a timely manor, and said that if I had a problem over the weekend,

    Not to put off calling her office and go right to the ER.

    I was to go, yesterday, but I actually felt better, like I make the turn in the road, ok.

    I guess, what I am trying to say, is not all Dr.s are bad, you just have to move on if you don't like one.
    I've been Lucky that all the Dr.s in my HMO understand FMSand all the other conditions.

    She did tell me that the fatigue may not leave me, she also treats Lyme Disease and CFS.

    I wish Everyone could have a Doctor, that is going to take them seriously, and Help ... Understand, and have some Compassion for their Patients.

    Good luck to you,
    sharonk
  7. mezombie

    mezombie Member

    I was referred to one early on when no one knew what the heck was wrong with me. He did an excellent job of listening to me and considered all sorts of alternative diagnoses. This meant I had lots of tests done and was referred to other specialists. I'm glad I went to him because he was very thorough and patient. No stone was left unturned. I feel confident that I have CFS and not something else that could cause my symptoms because of him.

    However, once he had eliminated all other possible Dxs, he lost interest in my case. All he suggested were "life style changes", without going into details. CFS was still pretty new (in the U.S) at the time, so he had only seen a few cases, and none of them as bad as me.

    Now that I think of it, he said he did see improvement with IV Gamma Globulin treatments, but had stopped them because noone's insurance would pay for them.

    After having a number of appointments cancelled by his office, I got the hint and moved on.

    Moral: Infectious Disese doctors are not a bad choice to make sure you don't have something curable or more treatable. This is really an important step in getting a CFS diagnosis. People sometimes forget that CFS is a diagnosis of exclusion, not just a set of symptoms that can mimic many other diseases. But for treatment? That really depends. Dr. Montoya is an ID specialist, and look at what he's doing!

  8. deliarose

    deliarose New Member

    an infectious disease specialist in Kansas City, Mo.
    Check out my posts to see his protocol.. how he has helped.
    He sees people from all over. There's a long waiting list, but it's worth it.
    Also takes insurance.
    Treats for underlying viral infections. V. up-to-date on everything CFS, Cheney's ideas, De Meirleir's ideas, methylation block/glutathione deficiency. etc..
    i travel from Chicago to see him.
    Been twice, may not need to go again.
    Good Luck!