how accurate are the FFC's tests to Lyme Disease?

Discussion in 'Fibromyalgia Main Forum' started by suexi, Sep 3, 2006.

  1. suexi

    suexi New Member

    does anyone know if it is a sure an accurate test that they give at the FFC for Lyme Disease? I have heard that L.D tests overall are not reliable. Does this hold true at the FFC? Thanks...
    susan
  2. pawprints

    pawprints New Member

    Lyme tests can be inaccurate. Lyme is also diagnosed by symptoms. Some of the FFC docs have a good handle on Lyme and others are very new to this area.

    It has only been in the last 1-2 years, that doctors are finding some CFS patients have had Lyme all along. By that point, the tests can be inaccurate.

    Talk to your FFC doctor about how many Lyme cases they have treated and for how long. You can also post the FFC city and some of the members here have experience with certain doctors.

    Good Luck.
  3. ANNXYZ

    ANNXYZ New Member

    uses , as far as accuracy . My advice : GET AN IGENEX !
    It is the only test that is considered highly reliable.
    If you have even TWO bands that are positive , then consider lyme a possibility .

    I truly believe that MANY members here are infected with lyme, but have not received an accurate test .
    The symptoms of lyme are the same as CFIDS or FM.

    Without treatment , improvement is impossible - period.
  4. jarjar

    jarjar New Member

    She said it all in the above statement. It is really hard for both of us to hear of so many on this board suffering from lyme and they have never had an accurate test so they can find a road to recovery.

    Igenex western blot is the one.

    J
  5. pawprints

    pawprints New Member

    My FFC doctor went straight to Igenex because I had been so sick for so long. I am happy he did.
  6. hopeful4

    hopeful4 New Member

    I was tested at FFC with Quest first. It came back negative. I did not improve with their treatment, and 8 months later, at a different FFC closer to my home, was tested with Igenex and came back positive. My husband tested positive with the Quest test, and was followed up with Igenex.

    As stated above, some of the docs at FFC are much better with diagnosing and treating lyme disease than others. Also, when I started treatment, that center had not been open for very long. I think that in the last year, in general, they have become more aware of the prevalance of lyme disease with their patients.

    I agree with pawprints: Ask the doctor how many cases they have treated and how long, and ask people here who has helped them. I went to the Seattle FFC for my diagnosis, and believe that my treatment is beginning to help me, after 8 months on the protocol.

    Best wishes,
    Hopeful4
  7. hopeful4

    hopeful4 New Member

    Suexi,
    I took a look at your profile and see that you are on disability. Do you have Medicare?

    I'm also on SSD and Medicare. The testing at FFC is done mainly through Quest labs, and they take your Medicare card directly and bill for you. Igenex will also take your Medicare card. So far, ALL, yes I said ALL, of my lab testing has been paid for by Medicare. I had no problems whatsoever with that part. It ran into the thousands of $$. Of course, Medicare pays at their own rate, a small percent of the actual costs, but NOTHING is billed to YOU.

    Do you have a secondary insurance? If so, you may be able to bill them for the office visits. If you do go to the FFC, just be sure to sign a form that states you have Medicare, and that FFC has "opted out" of medicare. Then you take that form, the superbill given to you by FFC, and send it to the secondary insurance for some partial re-imbursement on the office visit.

    What about prescription coverage? do you have that?

    Just trying to share with you the possibilities.

    Good luck,
    Hopeful4
    [This Message was Edited on 09/07/2006]