CFIDS or Lyme?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Sep 28, 2010.

  1. greatgran

    greatgran Member

    How do you know the difference when all lyme test come back negative?

    I have a FB friend who was dx with cfids now chronic lyme and is going to go through 52 weeks of IVantibiotic treatment. She had been on strong oral antibiotics for two years. She went to a Lyme doc in PA .. Not cfids but lyme. Makes one wonder.

    I have searched the web for a lyme doc close to me but I am not good at searching. Just wondering how you know for sure if its cfs or lyme.. Any symptoms different? I have no know bite, nor fever, but when you read about symptoms they are so much alike.

  2. Nanie46

    Nanie46 Moderator


    I think the best way to find out if you have lyme is to see a lyme literate MD.

    Did you have any luck with the LLMD names I sent you?

    Either way, it is likely one or more infectious agents that are making you so ill.

    It is not a coincidence that so many people who were first diagnosed with CFS/CFIDS or FM later found out they had lyme (and coinfections).

    You could waste the rest of your life debating this and never get well.
  3. greatgran

    greatgran Member

    No, I didn't have any luck finding a LLMD. I thought I had found one in NC but the doc has relocated in the Washington DC area. The other is only in infectious disease control and they will not see you without a referral. The symptoms are so similar I often wonder. I did order a testing kit from igenex but so far no doctor will help me with this, since my lyme test have all been negative.

    I will be seeing a new doc in a couple of weeks (the one I had no longer accepts medicare) after I get established and see how she reacts to cfids etc. then I am going to ask her to help me with the lyme test through igenex.. or maybe she will know a LLMD not to far away.

    You just know when your body feels like it has an infection, even though you have a normal white count and no elevated temp.

  4. Nanie46

    Nanie46 Moderator


    We usually do not have a fever or an elevated white count because the acute phase of the infection has passed. After that the infection spreads to all tissues of the body and becomes chronic causing other symptoms.

    I hope you can get the Igenex test.

  5. Nanie46

    Nanie46 Moderator

    I sent you an email.
  6. TigerLilea

    TigerLilea Active Member

    Hi gg - Isn't arthritic like pain one of the most prominent symptoms of Lyme?
  7. greatgran

    greatgran Member

    I haven't received your email.. In case you don't have the correct email its (emails not permitted and removed per Prohealth rules) . Thanks

    Tiger, yes arthritis pain I think is one symptom but fatigue and a lot of other symptoms..

    The doctor's office just called and rescheduled my appointment will be the 19th..


  8. Nanie46

    Nanie46 Moderator


    You can see that they removed your email address according to the rules.

    I used the email address you gave me maybe a couple months ago that starts with pj....

    I'll send it again and see what happens.
  9. munch1958

    munch1958 Member

    The Better Health Guy has some updated info about testing:

    Some of these look promising especially:

    "15) Spiro Stat Technologies -- Microorganisms include:

    Anaplasma phagocytophilum
    Borrelia afzelii
    Babesia microti
    Bartonella henselae
    Borrelia burgdorferi
    Borrelia garinii
    Borrelia hermsii
    Borrelia lonestari
    Borrelia parkeri
    Borrelia valasiana
    Brachyspira aalborgi
    Bracyspira hyodysenteriae
    Coxiella burnetti
    Ehrlichia chaffeensis
    Ehrlichia ewingii
    Francisella tularensis
    Mycoplasma fermentans
    Rickettsia spp (9 species)
    Treponema carateum
    Treponema denticola
    Treponema pallidum
    Treponema pertenue
  10. victoria

    victoria New Member

    As I've often said, my son mirrored my symptoms of fatigue, then became worse with symptoms of pain = fibro, for all practical purposes. ALL his regular blood tests came back normal, at the same time he was positive for Lyme per CDC's standards for tracking.

    It is very diabolical how Lyme AND other bacteria and parasites work. And of course even the CDC says not everyone with late stages of Lyme will show up with a positive to their tracking requirements, so they say it is ultimately a clinical dx. Not to mention it may not be Lyme, it maybe mycoplasma or a number of other types of bacteria in particular. Add in the opportunistic viruses (HHVs) etc.

    You might try to get doctor referrals thru state Lyme organizations (most have them now) &/or neighboring state Lyme orgs... also And, CALDA and other major Lyme orgs are on FB, as well as many state orgs, btw.

    Hope that helps.

    [This Message was Edited on 10/26/2010]