LLMD says Fibro is curable

Discussion in 'Fibromyalgia Main Forum' started by jbennett2, Sep 8, 2005.

  1. jbennett2

    jbennett2 New Member

    I have been seeing a LLMD, who is also a fibro specialist,
    and was speaking to him about my fibro. I have been tested for lyme also, but have a "maybe" diagnosis. I have some of the bands.

    Anyway, my dh is also going to him to be tested for Lyme. His PCP told him that Fibro is curable. When I asked Dr. C about it, he says, "yes it is. If you can find the underlying root of the problem, you can cure the patient with the proper treatment". I believe he "cured" himself of fibro, if I remember correctly.

    Well, I know I have helped myself quite a bit with supplements and diet, etc. but I can't really say that I'm cured. We have not found the underlying problem would be his answer to that. Could be thyroid, could be lyme, could me any number of things.

    Something to think about.
  2. dontlikeliver

    dontlikeliver New Member


    With all due respect, are you SURE this guy is an LLMD.

    It does not sound like it, especially if he is relying on test results only, especially when you present with 'Fibro' problems (which most LLMD attribute to Lyme).

    Lyme disease, first and foremost, is a clinical diagnosis. If he's an LLMD he should know this and also that the sx of Fibro ARE the symptoms of Lyme.

  3. lilbird

    lilbird New Member

    I agree with your Dr. I think most if not all of us have an underlying problem. Maybe its wishful thinking on my part, I dont know. But I do think I will get better when I find the root of the problem

  4. elsa

    elsa New Member

    I am getting better. I believe I'll improve even more,
    but ... "cure" is a very strong word. Scientist are working diligently to uncover the cause of fibromyalgia, but it is still an unknown. You can't cure until you know what went wrong.

    Underlying system failures can be treated and adjusted
    which gives us better health ... but until the cause of the
    system failures are determined there can't be a "cure".

    I intend to treat the underlying causes with everything I've got in order to regain the most I possibly can ... and when the cause and cure are finally discovered, I'm going to try and be first in line.

  5. jbennett2

    jbennett2 New Member

    yes, he is a LLMB - he is even listed in Devan Star??? book. He has given me a temporary diagnosis for Lyme from clinical evaluation and will start me on antibiotics as soon as I have another problem cleared up. He says if the antibiotics cause a herx, then it will then stand to reason that I do have lyme.

    Some of the other bloodwork he ordered kind of creeped me out. I was low on quite a few things, even though I take supplements, and when I went to different websites to search what the results meant; the results showed things like "compromised immune system", or the scariest - heart failure. That showed up on quite a few of them. I can't wait to discuss these results with him next week. He did not want to go over them with me on the phone.
  6. jbennett2

    jbennett2 New Member

  7. abbylee

    abbylee New Member

    But I think my grandmother had it because she was always in pain, but no one could find anything wrong with her.

    My first symptom was the tender point on right side of my chest. I went to the doctor and he said it was some "fibrous tissue." It felt like a small lump to me, but he said that it wasn't. I was 12 years old.

    During my teen years, I was never able to take PE in school. I can't remember specifics, but I always had a medical excuse. I was also achy and sickly. Had migraines, too, come to think of it.

    In my 20's - 40's I always hurt and seemed to catch every virus that came around. I had children and little time to spend on myself.

    Now I'm in my 50's and getting progressively worse. I'm taking Xyrem which helps me get delta sleep, but I've had to increase my Methadone and add Oxycodone. It has helped with flares and pain, but the pain is getting worse again - or I'm just less tolerant of it (tired of it)).

    All I really intended to say was that I think mine was inherited. Sorry for the ramble.

    abbylee PS - But I don't think it's curable.
  8. cjcookie

    cjcookie New Member

    Also, what is a dh? I know it's something husband. I used to think it was divorced husband by the way some people used it but now I don't think so.

    Anyway, let's hope someone finds a cure.
  9. tandy

    tandy New Member

    = darn husband
    or damn husband!!!

    Thats what I think it means :)

    I really don't know what others here mean by it??
    just my own thinking brain :)
  10. justjanelle

    justjanelle New Member

    DH is for "Dear Husband" -- at least most of the time! (smiles)

    Best wishes,
  11. dontlikeliver

    dontlikeliver New Member

    I am glad he's familiar with herxing, and hope he also realises that not everyone herxes, or that each and every person can have a different herx schedule, not necessarily the fourth day and the fourth week of abx.

    As for the other things you mention, as a consequence of Lyme most of us have all or a selection of the things you mention, but common to all Lymies would be a compromised immune system...and sometimes heart problems.

    Devan Starlanyl, as I recall from reading her book a few years ago, is that she is a "Fibromyalgia" expert.......nothing to do with Lyme disease, ILADS or LLMD's. I have sold the book so I cant even check if she mentioned the word LLMD in there about any doctor. Most LLMDs feel Fibromyalgia IS Lyme disease (i.e. Fibro is not a separate illness in itself, but is only the symptoms of Lyme and coinfections), so Devan Starlanyl, I guess, is not up on Lyme that much as she wrote a 'Fibro' book and therefore I am even more surprised if she mentioned any true LLMD in there as that would be kind of like shooting yourself in the foot.

  12. matthewson

    matthewson New Member

    I wish people would quit saying that! My FMS was triggered by a hysterectomy. Don't see any lyme involved in that! And it is a separate disease. I don't have any fatigue, in fact I am quite active aside from the PAIN which is my only symptom (also a little brain fog, but I chalk it up to the meds!). That is just false information!

    I know you lymies are sensitive about other people posting differing opinions and I was going to stay out of this post, but please, don't give false information to people out there who don't know any better!

    Stick to lyme if you have lyme, but don't tell people that FMS is lyme disease like it is a fact. It's not, it's your opinion.

  13. sickasadog

    sickasadog New Member

    I was just diagnosed with chronic lyme disease, but was told Fibromyalgia was secondary. In fact, my LLMD even said that once the lyme is properly treated, there is a good chance the fibro will remain! Fibromyalgia can result from many different things, even car accidents, lupus, various infections, etc.

    And, fibro is also not "curable" IMO.
  14. BethM

    BethM New Member

  15. justlooking

    justlooking New Member

    I think it is Lyme Literate Medical Doctor.

    But if I'm wrong someone will correct me. I just hated to see you and cjcookie get ignored in the midst of a heated battle LOL
    [This Message was Edited on 09/10/2005]
  16. Fibrolady37

    Fibrolady37 New Member

    not sure that you should take this LLMD seriously.
    Have you any proof that he is qualified?
    I think you should check him out i really do.
    As sufferers of these DD"S we are very vulnerable & there are lots of people who take advantage of us,please be very careful i wouldnt want you to have faulse hope & get hurt.
    Take care fibrolady37
  17. sofy

    sofy New Member

    I just read a talk by the big lyme doc in Mass and in it he said if you have one band you have lyme. All lyme docs will tell you that it is a clinical diag. and that the tests are just a small part of finding out your underlying cause is "lyme disease"

    I first tested positive in 1990, when the tests were less sensative than now. I listened to the docs who said , no you have poly myalgia rheumatica.

    Had lyme couple more times and finally in 2002 I fell out of life and am disabled due to chronic lyme. Oh, if I knew now, what I know now.

    Dont let some doc, who only knows surface info about lyme determine how you are treated. At least I hope you dont do what I did and listen to a nice but ignorant doc at a major teaching hospital.

[ advertisement ]