New Test

Discussion in 'Lyme Disease Archives' started by zena01, May 5, 2010.

  1. zena01

    zena01 New Member

    Hi, I found a site called the Lyme disease research database several months ago. I went far enough to be getting their weekly e-mails, but while there is "free" information on the site, they charge you to see the rest it costs 9.95 per month and for a lifetime membership 99 bucks!

    So I'm not a member cause it just grates on me to pay for information......So when I get really interested in something, then it goes to a "members only" section............ but they do have some info I think is important in their "free area", and they have an article on a new test that I thought I'd share. You all may already know about it, I may just be slow in finding out about it, but thought I'd share...... it is a test that looks for the disease itself. ****** They have a test that instead of looking for the antibodies that build up in response to a Lyme Borreliosis infection, their Flow Cytometry technique finds the Borreliosis antigens directly. ******

    I wonder if this would be a way to say hey, here is an Borreliosis antigen - see, I still have lyme after a year 1/2 of treatment and I need to stay in treatment because I'm still miserable? Or, I get the test and find out there are no antigens left but that something else is making me miserable?

    Anyway, the name of the lab is Central Florida Research Laboratory and they do have a website

    the contact info
    Central Florida Research Laboratory
    Winter Haven, FL
    Medical Director: Clifford H Threlkeld, DO, FCAP
    Phone Number: (863) 299-3232
    Fax Number: (863) 299-3355

    Thanks, -- in re reading this, I see I rambled and I apologize but am too tired to bother making it better sorry,

    [This Message was Edited on 05/05/2010]
  2. chaps

    chaps New Member

    Again, this test is not that definitively reliable. I had it done. Mr. Threkeld told me over the phone that my result was a count of 5, and to be considered positive for Lyme, you had to be at around 17 or above.

    When I called him a couple of years later to tell him that although he told me I was negative, when I was actually positive, he admitted that the test was not foolproof. He went on to say that the elements that the flow cytometry test may detect in its measurements can be things other than borrelia, such as aluminum particles from anti-perspirants and who knows what else.

    While this may be one of many tests to take to collectively form a clinical diagnosis, it is like other tests: not totally reliable.

    If you're trying to see whether you've got a ton of borrelia versus some, then it might be useful, but it's not going to be deadly accurate.
  3. zena01

    zena01 New Member

    Thank you for letting me know that this type test has been out for at least a couple years. The Florida research center made it out like it was a new test, and they say "one of the most accurate Lyme disease tests available today" and that they have a "patent pending" on their process. I wonder if it's just a new version of an old test?

    I did click in the "contact us" and sent them an e-mail asking questions about their test. My two questions were.......I said "I don't mean to be negative here, but since lyme bugs like to live in your tissues not your blood how can you be certain your test will be accurate? How can you be positive that the vial of blood collected from a person who DOES have lyme will have any of the antigens in it?" and "wow does this mean you can test someone during and after treatment to know for sure they are cured?" I haven't heard anything from them yet -- and will post what they say if I do hear from them.

    I want something totally accurate as we all do. Oh well.
  4. chaps

    chaps New Member

    I don't know exactly how long it's been around, but I don't think it was brand new when I tried it in '08.

    And you made a good point about the blood. From what I understand, Lyme goes through stages when it hides, changes forms, etc. What if you happen to do the testing when the Bb is not floating around in the blood?

    To me, a positive clinical diagnosis can be made from the following:

    Igenex WB showing ANY positive or IND bands at all.
    CD57 count under 200
    Chronically elevated sedimentation rate, showing chronic inflammation
    CRP test showing heart inflammation
    low hormone levels, thyroid, adrenals, testes, etc.

    Plus some or all of the following symptoms:
    Decreased libido
    Chronic fatigue
    Post exertional malaise and shakiness in the muscles
    Tingling in the hands, fingers, feet
    Weird headaches, eye pain, temple pain
    Other neuro symptoms, neuropathy
    Heart Palpitations
    Light Sensitivity
    twitching nerves
    swollen lymph glands
    digestive disturbances, constipation
    pain or nerve impulses in the brain
    joint pain, arthritis
    back pain, muscle pain
    brain fog, slurred speech, trouble thinking of words to say, speech dislexia

    And if your Lyme disease has cause terrain issues in the gut, then you'll have yeast overgrowth, fungai, and parasites.

    The yeast overgrowth has it's own set of symptoms, for me, they were irritable bladder, bowel, and prostate.

    The yeast and fungal overgrowth will also cause leaky gut syndrome. Leaky gut syndrome will cause food sensitivities that the subject won't be aware of and this will create its own set of autoimmune problems, which are probably the cause of the arthritis mentioned above. Mostly what I felt from the leaky gut was the fatigue that even sleep doesn't fix, but all other symptoms were exacerbated. Fibromyalgia can develop from the lack of sleep.

    Because of the immune depletion, other infections and viruses can tag along for the ride that the immune system previously kept down, such as Epstein-Barr (HHV-4), Cytomegalovirus, HHV-6, and Human Parvovirus.

    Well, I took this further than I intended, but my point was made after the symptom list. I haven't been to an LLMD yet (still trying to decide who to go to because this is the most important decision of all), but when I do go to one, I'm sure that he/she will run other tests of which I'm not aware that might also be significant in diagnosing Lyme.
  5. zena01

    zena01 New Member

    I was pleasantly surprised they wrote back and did admit not perfect

    "I agree its a major step forward, but no test is perfect. I also agree with your assumption that the longer a person has symptoms the harder it is to find it in blood, but we do find it in long term patients blood. The way this test is designed if the bacteria is in the blood we should find it. The issue is, as you pointed out, that the bacteria harbors in tissue and the amount in the blood is diminished to where we cant be certain that it is bacteria.
    There is no way I know of to be certain that you would have the bacteria present in your blood before running the test. I have heard differnt protocols that practitioners suggest will force the bacteria into the blood, but there is no proof that those are effective."

    So the test must be a new way or more precise way of doing flow cytometry. If I remember from their site is 2 or 250 -- that's too much for people to use it to try to see if you have killed it all during/after treatment.....and especially if treatment moves it out of your blood.....but, if you do a western blot and it's neg or IND, or just has enough bands to make one curious.....and you still think the symptoms say lyme it may be a good test to back that up do you think?

    Take care,

    [This Message was Edited on 05/07/2010]
  6. chaps

    chaps New Member

    I've spoken to Cliff on a couple of occasions. He's a good guy, answers questions, doesn't give you the bum's rush.

    So many people you call just want to sell a book, a supplement, a test, a treatment, whatever, and they're just in it for the money.

    Cliff's not like that, he talked plenty with me and didn't rush me off the phone. Since he himself is a Lyme sufferer, he's empathetic.

    I was having symptoms for two years when I had the test done, and my count was 5. I don't know, but I don't think two years is that long. Most people don't get on the scent of Lyme until longer than that, being treated for multiple "wrong numbers" before finally coming back to Lyme. I feel fortunate diagnosing it after 4 years, and don't forget, it took a psychic to point me back in the right direction. Seems to me, most people go a lot longer than that before finally diagnosing it.

    I don't mean to discredit the test, but if it can't find the stuff after a person has had it for less than two years, I don't know how useful it can really be.