cbs1234 Igenex and Florida Central Research

Discussion in 'Fibromyalgia Main Forum' started by mollystwin, Mar 10, 2007.

  1. mollystwin

    mollystwin New Member

    I'm not sure if you've checked, but there are several responsed to your Igenex post. I noted in your profile that you have posted about Igenex in the past. One of your posts referred to a New York Times article about the company and the test. As a result of this article Igenex was investigated and PASSED THE INVESTIGATION. For a time there was a full page on their website about this along with a copy of the certification.

    I put a copy of an article in your previous post about this Igenex investigation. I am very concerned that your comments will cause some not to get tested for lyme and therefore not be treated. I wasted many years and lots of money being treated for CFS and Fibro only to find out I have lyme. Right now Igenex is the best test for lyme.

    There is another new test coming out to test for the antigen as opposed to testing for antibodies. I posted this in your igenex post as well. I was afraid that people would not see it and not be aware, so I'm posting here as well. This test is by Florida Central Research and will be available soon. For those who are sceptical of Igenex, perhaps they can try this test. My biggest concern is that people have lyme and do not get treatment.

    And your comment about if Igenex had the only good test, why weren't other labs doing it too. Well that's the problem. There aren't many labs or even many doctors who want to deal with the lyme issue. But I believe that is going to change, and hopefully soon.
  2. wrthster

    wrthster New Member

    SUNY Stoneybrook in New York has Lyme testing available as well and can be an alternative to IGENEX. I have mixed feelings regarding Igenex. I am not sure what to believe at this point. I can tell you that Stoneybrook being a University Lab probably has good testing available, but I have never used them.

    From what I understand also, Lyme is a very clinical diagnosis much like CFS and FM. My Lyme tests (Quest) did not meet the CDC criteria, and three bands were positive. I believe IGM/IGG band 41, IGG band 39, and then IGG band 58. Only one is specific for Borellia, and a lot of organisms have flagellum. I also understand that gum disease is suspected to be caused by spirocites as well.

    My doc is an LLMD and does feel it is Lyme. I am personally not sure and really confused at this point because I am one of those rare cases who I am pretty sure was born this way. I was told by a Professor of Pathology that I am considered in a "grey area". Meaning mostly that it would have to go probably at this point more by clinical diagnosis. I am going to have one more test done by another lab to see how the results compare. Because Lyme treatment is very rough. And I don't think I can tollerate the antibiotics.

    Finally, from what I understand, there is the CDC guidelines and then New York State Health Department has a different set which allows for a grey area. Very intersting and frutsterating at the same time. Just thought I would share.
  3. mollystwin

    mollystwin New Member

    Perhaps when the new tests come out that look for the bacteria, you can get a more conclusive test. You are so right in that this is frustrating! I went through a lot of denial and frustration before figuring out what I should be doing. It doesnt' seem fair that is has to be this difficult to figure out, but that's how it is.

    I wish you the best of luck in figuring out how to deal with your situation.

    God Bless.