Lymes- LLMD Specialists

Discussion in 'Fibromyalgia Main Forum' started by pumpkinpatch, Sep 17, 2005.

  1. pumpkinpatch

    pumpkinpatch New Member

    For those members going to a LLMD specialist can you tell me what about your treatments plans.

    I was diagnosed at the Fibro centre but I'm thinking I should maybe see a specialist in this field.

    I've been on antibiotics since the end of July and I'm not feeling good now. I made a mistake by taking my ab on an empty stomach this morning and was vomiting. It seems my symptoms have magnified ie. dizzy, fuzzy vision, nausea, more pain etc.

    I'm a 7 hr. drive to the best LLMD in Canada. He even e-mailed me this morning.

    What are your thoughts?

  2. victoria

    victoria New Member

    there are different protocols, and it depends on you as well.

    My son is seeing an excellent LLMD in the southeast US, is on 2 abx that change every 4 weeks, plus flagyl for one week of each month.

    I have a friend who is going to the same clinic, she is only on one abx.

    However, she has a lot of allergies, is older (she is 48 vs my son is 18) and has had the dx of CF/FM for quite a few years now.

    What did your doctor say? Sounds like s/he cares if you got an email on a Saturday! Are you supposed to take the abx with food if it upsets your stomach?

    all the best,
  3. pumpkinpatch

    pumpkinpatch New Member

    I e-mailed the LLMD specialist but I've not seen him yet. He said he has a lymes clinic every Sat.

    I will be talking to the FFC doctor next week about my lymes treatment protocol with them.

  4. jbennett2

    jbennett2 New Member

    in Lebanon N.H. is an LLMD. If you are on the eastern side of Canada, and traveling to the states is a possiblilty.

    I am newly diagnosed and am on 2 antibiotics, doxycycline and clarithromyacin. Also an anti-malarial that is used for Lupus also, Plaquenil

    I started treatment on Wed. and have not started herxing yet. Can't wait. NOT
  5. sickasadog

    sickasadog New Member

    I am newly diagnosed with late stage lyme (have been dx'd with CFS/FM for 10 years, but my LLMD feels the FM is secondary tolyme. I was started on doxycycline and plaquenil. When I get the results of my coinfections test, some of these meds might be changed.

    If you read any of my other posts, I had mentioned that my friend goes to FFC and was not happy with they way they are handling her lyme, more so in their not taking it so seriously. They did not tell her too much about the meds and what to expect, to take w/ food, stay out of sun (she is on a med you must stay out of direct sun), whereas my LLMD feels lyme is a BIG deal and highly responsible for most of my symtoms and he gave me much detail about my meds and how to take them, etc etc.

    In short, my answer to your question is, yes, definitely see a LLMD!!! My friend feels the FFC is great with FM/CFS but they are not lyme experts and lyme is a very serious underlying disease.


    P.S. If you read BrenndaTX post, she had the same concern i believe
  6. sickasadog

    sickasadog New Member

    what the fibro center also should have told you is that, when people w/ lyme go on "lyme meds", their symptoms often get much worse initially (herxheimer reaction). This is very normal and I believe actually is a good sign the meds are working and that the Lyme diagnosis is indeed accurate.! They should tell you all this stuff!!
  7. pumpkinpatch

    pumpkinpatch New Member

    My Igenex IgM western blot had many IN and positives so I had enough to treat me. The first month I really didn't notice any difference but since Sept. 10 I've been getting sicker. Pain is totally magnified.

    The FFC didn't mention any thing about herxing. I'm glad you mentioned this could be a sign the lymes is positive and the meds are working. It's just scary! I put a call into FFC last week but they didn't call back. Have a phone appointment Sept. 22.

  8. pumpkinpatch

    pumpkinpatch New Member

    Thanks for your help. How are you feeling?
  9. sapphire

    sapphire New Member


    I highly recmmend seeing an LLMD. I see the same one fogged sees and he is great.

    I agree that what you are experiencing is a herxheimer reaction. I took doxycycline for the first 2 months and felt awful the whole time. Thank goodness the dr warned me this could happen.

    At least, I knew the diagnosis was correct and the meds were killing those buggers. I hope you start feeling better soon.

    This isn't a quick fix unfortunately. I'm on my fourth abx and haven't seen much improvement but I've been sick for 16 years and probably longer. I did have about 1 month that I felt better but then I relapsed. At least, I know that I can be better and will eventually. You will get better but it will take time.

    Take care,
    Sapphire P.S. Go to Lymenet.
  10. karatelady52

    karatelady52 New Member

    Who is the LLMD doc your son is seeing in the Southeast?
    I'm in Northeast Georgia.

  11. karatelady52

    karatelady52 New Member

    bumping for Victoria

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