Igenex vs. other labs

Discussion in 'Lyme Disease Archives' started by Shalome1990, Jan 1, 2009.

  1. Shalome1990

    Shalome1990 New Member

    I had my blood tested by Igenex and I was positive for about 5 different bands on IGM and IGG. However, when I went to a new Infectious Disease Specialist, he said that he didn't know Igenex and told me that Lyme and chronic fatigue people were so desperate that they are throwing their money away on doctors who can't even help them.

    He was saying that he could never get any of his patients that said they have Lyme to show positive on a test from a "regular" lab. He made me go across the street to a hospital and have my blood drawn.

    I asked where they were sending it and all they said was Birmingham. I have been on antibiotics for over a month for Lyme and Ehrichilosis, do you think that test will show positive?? For 20 years I have searched for an answer to what was wrong with me, and 2 months ago, I was tested for Lyme & Co, and it was positive, I felt like I finally had an answer and I feel like he is trying to take it away from me. I am scared of what this might mean to me if he says I don't have Lyme............ :(

    Thanks
  2. victoria

    victoria New Member

    IGenex is a 'regular' lab fully certified by the FDA etc. The difference is that they specialze in lyme and handle it a bit better, thus their higher reliability rate. I'm taking a guess that your doc may have read the article a few years ago in the NY Times that tried to cast suspicion on them, saying they were being 'looked at' (or words to that effect) by the FDA, when it was really just being re-certified.

    If I were you, I would print out the the CDC's own guidelines that it remains a clinical diagnosis primarilyh, not one based on a blood test in any case, no matter who performs the test. IGenex is only reliable at best about 70% of the time, the others have a lesser reliability. they have now gone along with the IDSA's guidelines as it saves the insurance companies money.

    You might want to look a little further for info, as it has become very 'hot' politically:

    http://www.lymeinfo.net/cdccitations.html

    http://findarticles.com/p/articles/mi_m0ISW/is_/ai_n6112662

    What have your reactions been to the abx you've taken so far?

    all the best,
    Victoria

  3. munch1958

    munch1958 Member

    Your IDSA doc will tell you it's "Post Lyme Auto-immune disease" which makes NO sense if you've never gotten a diagnosis of Lyme and treatment.
  4. Shalome1990

    Shalome1990 New Member

    Made me sick as a dog for about a week.

    Started with fatigue and pain. I was told it was Chronic Fatigue and Fibromyalgia, but I just felt there was more to it then that. I went to a FFC doctor in Atlanta and paid out of pocket...tooo much money. After six months of their treatment and no improvements, I asked, what is next, this is too much money and I am NO better. She did a bacterial panel and a viral panel. Showed Lyme/Ehrichilosis, Cyclomeglovirus, and HHV-6.

    So, I took those results to my PCP. She sent me to an Infectious Disease doctor, who ranted and raved about how the Fibro doctors and Lyme doctors should not be prescribing the medicines they are giving and how he had never been able to duplicate labwork that shows that someone has Lyme disease.

    Because, my first question to the infectious guy was.......do you believe in late stage Lyme Disease? He said, No reputable doctor would deny that it exists. So, I showed him my labs from Igenex, and the virals from Quest.

    Then he went on his rant when he saw the antiboitics I was on. He told me to stop immediately. Then he sent me across the street to the hospital to see if their results say I have Lyme, then he will give me IV antiboitics for 28 days, and then he said it would be gone. So, I would like the 28 days of Rocephen, but I did not quit taking my antiboitics, because I believe I have to take the antiboitics until I have 2 months of no herxing. And, I had herxing in November, and December.

    So, my question to this ding dong next time will be, ok...if Lyme can be cured after 28 days of Rocephen, then why do you believe there is such a thing as Late Stage Lyme?? :)
    [This Message was Edited on 01/03/2009]
  5. victoria

    victoria New Member

    I'm not surprised he avoided the whole question, as then he would have to answer why he won't treat you appropriately.

    I did think abx had to be stopped about 2 weeks before a test, but not sure, as I know my son was tested a 2nd time and still showed CDC positive--

    but I do know he wouldn't have gone more than a week without abx at the time due to the protocol he was on. Some LLMDs do feel that giving a few weeks + of abx can prompt the spirochete to replicate and show up in the blood, but not sure it's been proven or not.

    Let us know what happens, seems like you've sort of put him in a corner re his 'beliefs' and his treatment.

    all the best,
    Victoria

  6. Shalome1990

    Shalome1990 New Member

    Thanks, Victoria.

    It is just so hard to get a diagnosis. With the chronic fatigue, I understood why some doctors did not want to believe me, but then when I found the Lyme, I thought I had an answer.

    So, for it to still be disregarded by so many physicians is really a let down.

    But, I quess we can't quit........
  7. Nanie46

    Nanie46 Moderator

    At the top of the page on the Igenex website, it states that Igenex is a reference laboratory.

    From what I have read, a reference lab is not a regular lab.
  8. victoria

    victoria New Member

    The last I heard was that IGenex was certified as a lab by the FDA fully, and even MediCare would pay for tests. They are working on new tests as well.

  9. Renae610

    Renae610 New Member

    Hang in there, Shalome! If you got a diagnosis of Lyme/Ehrlichia from IGeneX, I think you can believe it. The doctors who don't believe it are uninformed. Get a Lyme Literate MD if you possibly can. It is hard enough being so ill for so long, without having to fight through the ignorance among others. You are the patient who deserves proper help. ((hugs!))
  10. Shalome1990

    Shalome1990 New Member

    As always, thank you!

    How is your daughter doing?

    I just made an appointment to drive to PA, 16 hours away, to see a good LLMD. Not sure how long we can afford the treatment, but it seems like my only way to get help from someone who knows about lyme. There is 1 doctor closer, but he will not treat my daughter, so he is out of the question.

    XXXX back!!!