"Central Florida Research's Test Anyone do it? article etc...

Discussion in 'Lyme Disease Archives' started by victoria, Feb 16, 2008.

  1. victoria

    victoria New Member

    This is an interesting article about it, I remember reading the press releases but not much after that. What is interesting is that the article's author quote IGenex's founder as saying their results are less than 50% accurate... way different than the 70% I've always read. I wonder if that's quoted accurately?

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    Local Lab's Discovery Waits for Buyers;
    Lake Alfred scientists develop an improved test for Lyme disease, but sales prove to be disappointing.
    By Kevin Bouffard, The Ledger

    LAKE ALFRED | A struggling laboratory here is learning it may require more than building a better mousetrap to get the world beating a path to its door.

    After developing an improved diagnostic test for Lyme disease, Central Florida Research Inc. in Lake Alfred is still waiting for a crowd at its doorstep.

    "These last seven months, nobody in this business has gotten paid," said Tom Long, 55, the lab's executive director. "The revenue has been just enough to cover our expenses."

    The staff has shrunk from eight people to three in the past year, Long said. He hopes the new diagnostic tool, called a "Lyme Antigen Test," will make Central Florida Research profitable.

    The lab staff developed the antigen test under the direction of its medical director, Clifford Threlkeld, a pathologist and also lab director for the Heart of Florida Regional Medical Center in Davenport. Central Florida Research has applied for a patent, which it hopes to get in 2009.

    "I do think it will be successful," Threlkeld said. "It's not the be-all-to-end-all, but it definitely adds to what's out there."

    Lyme is a bacterial disease most commonly spread through the bite of a deer tick. In its early stages, the disease causes flu-like symptoms, including fever, fatigue and muscle or joint pain.

    Left untreated, the bacteria can cause chronic problems in the heart and nervous system, including cardiac inflammation and paralysis. It can be fatal.

    Because Lyme disease shares symptoms with other illnesses, it's very difficult to diagnose.

    Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto, Calif., the leading U.S. lab for Western blot screening.

    That high rate of "false negatives" - people who test negative despite having the disease - also causes problems for Lyme sufferers, said Lori Hoerl of the Florida Lyme Advocacy Group in Jacksonville, who has the disease.

    If a doctor later diagnoses Lyme disease, insurance companies will use a negative Western blot to deny paying for treatment, she said.

    The Central Florida Research test represents an improvement because it detects the actual presence of the Lyme bacteria, said Pat Phillips, its lab director. The Western blot detects only antibodies, or substances the body produces in reaction to the bacteria.

    The Lyme Antigen Test has proven to be about 90 percent accurate, Long said.

    The lab finished development of the test a year ago, he said, but it took seven months to get state and federal licensing to perform it. Since then, Central Florida Research has been trying to spread the word among front-line doctors who treat the disease.

    Besides word of mouth, the lab team has an information booth it has taken to medical conferences and seminars, such as a Jan. 19 event in St. Peterburg, he said.

    Central Florida Research does about 10 to 20 tests a day, but it has the capacity to do 100 tests, Long said. It charges $250 per test, slightly higher than a typical lab fee.

    The lab's Web site, www.centralfloridaresearch.com, also has helped market the test, he added. It's gotten referrals worldwide, including Chile, England, France and Germany.

    From a personal standpoint, the results have been satisfying. A Winter Haven woman in her 30s had led an active, vibrant life until last year, when chronic fatigue forced her to drop out of graduate school, Long said. Previous tests were negative, but the antigen test showed she did have the Lyme bacteria.

    "She's gotten her life back. She's back in graduate school," he said.

    A 60-year-old woman from Chile also had been battling pain and fatigue for years but tested negative for Lyme, Long said. She's undergoing successful treatment after the antigen test proved positive.

    Despite the state and federal certifications and the clinical results, Long, Hoerl and Threlkeld agreed Central Florida Research needs to gain the trust of the medical community before the test becomes widely accepted.

    Long said he believes the small Lake Alfred lab can develop the same high regard enjoyed by Harris' IGeneX Labs.

    "He's developed a reputation," Long added. "There's room in the marketplace for another company."
  2. wld285

    wld285 New Member


    Very interesting, but I'm wondering how many docs know about this.
  3. eec1

    eec1 New Member

    i learned of CFR from bowen -i have tested twice with the Qribb and had a 1;128 both times march 05 and may 06this Qribb is no longer avaiablei was under the impression that it was bowen moving to a new facility and breaking away from the bowen techiqueorganization--i did my blood draw on a tue an dr had results by thurssame rules for shipping as bowen hadi see dr this fri but i am sure i willhave another positive resulti have also used quest labs and lab corp for 6 or 7 elisa and they are all negWB at quest had only 41 posi also used quest for thier CD 57thier results read in % of lymphcytesnormal being 35 my 2 tests were both 4may 07 and dec 07i am on short term state dsability for the third time since sept 04i am/was a sheetmetal constrution worker/welder and will be 49 next monthi have had enough of this pain and suffering and i am considering applyingfor SSI
  4. victoria

    victoria New Member

    you should apply immediately... there's no reason to wait. It can always be stalled if you do get better, but then if you get worse it can be backdated.

    That is what happened with my son applying for SSI; he was in denial and tried to work but since I'd started the application for him prior to working, 6 months later I re-started it for him and they backdated it to when I first called.

    Of course, it is on appeal & he's still waiting...

    I hope you find a good LLMD if you don't have one already?
    all the best,
    Victoria

  5. desertlass

    desertlass New Member

    Should we be using this lab instead?

    Or are they going to go under, and be considered illegit for a dx?

    I was getting my paperwork with Igenex ready to take to my doc to sign off for it.

    But then I saw this article, when I looked up the lab's website.

    What to do, what to do?

    Lisette
  6. eec1

    eec1 New Member

    igenix is anti body test central FLA research is antigen test similar to old bowen Qribb testigenix is FDA but do not follow CDC interpetation CFR is not FDA yet and CDC has no interpetation guidelines for it either you see it or you dont no slide rule required if you are worried about GOVMT approval seek a new DR the dx is between you and the DR i searched and found another article that didnt seem so doom and gloom i used bowen for 2 years and that test is gone no longer available but after what i went thrui wear my test results proudly and they will be my evidence in my SSI claim i dont give a rats--- what FDA/CDC say they could have developed the same tests lyme is highly visible in a radio shack microsocpe thats why it is so puzzleing we all go to dozens of DRs with presentation of obvious symptoms and there is nothing wrong or we are delusioal or hypocondriactic -- DRs dont draw blood they dont have microscopes they read reports and refer victims (us) to other senseless specialist the cost of senselessnes is way more than a jar of abx any way enough of my ranting (full lunar ecilpse here in CA) central florida research look them up and call themthey also have WB and the screening test the new test is calledBb-DFA with enumeration and quantification by flow cytometry--a direct fluorescent antibody test that identifies antigen-- insurance CPT code 88346 TC i will see my test results fri 2-22-o8 at 3pm/pst ps the CD-57 test isnt FDA approved either is that stopping DR S in SF i dont think sohe helped develop it--there really are DRs that help us and they dont work for the G-man////WOW is it the moon or is my herx over im ready to go on an east coast swing and kick all there butts FDA-NIH-CDC-IDSA-OBAMA-HILLIRY- THEY CURED gw BUSH while the tick was stil on him-he probably had an IV in each arm while getting a blood transfusion right there in the field
  7. eec1

    eec1 New Member

    well i got my CFR test results and it shows a huge improvement in the count of organisms in my blood that went into the tubes / the results are NEGATIVE for Bb (5 organisms counted)/negative is 17 or less organisms counted per 50,000 events AND positive is 18 or more per 50,000 events// march 2005 i had my first bowen test come back positive off the chart high count /so at least my blood is cleaned up but i am very late stage also and i am 1 week into a 3 month biaxin/diflucan treatment / so while it is NEG it is still in there in very low amount // was the leviquin hexing body pain worth it?? you bettcha it was- i could have taken even more suffering!!! not really i took the suffering as far as i could handle -but it was worth it / the biaxin/diflucan is suppossed to work even better ///i guess ill be going back to work in 2-3 months after PT rehab to repair tendon damages and i can race motorcycle again and go rock and ice climbing -hell im gona go downhill skiing next week and get drunk while i do it//if any one wants more info you can email me at eec4ajs@webtv.net// i knew i was improving all along - once i had a dx in 2005 i was not giving up and i wasnt going to lose either i never lose
  8. victoria

    victoria New Member

    My son used Levaquin, and also had a hard herx for the 1st month...

    But (-his doc has him pulse it), when he started again, he had such a weird experience (he felt like all his muscles & everything were tensing up and then relaxing, constantly), it was hard to determine if it was an adverse event or a herx... so he was told to stop it for a month.

    Well, that was his best month ever actually, but we are all afraid for him to try it again after reading all the problems levaquin has caused for others. Dangerous abx, but if it can be tolerated, extremely useful for this 'stuff'!

    Welcome back to your life!!!!
    Victoria