Has anyone tested NEGATIVE on Igenix?

Discussion in 'Fibromyalgia Main Forum' started by mshvan, Sep 21, 2008.

  1. mshvan

    mshvan New Member


    Well, I'm going to get Igenix tested myself. But I was wondering....has anyone tested NEGATIVE on these tests?

    I mean it makes sense, that those that post are posting because they've tested positive, but I wonder if anyone ever gets a negative result.


  2. Rafiki

    Rafiki New Member

    that we do have members who have tested negative but I'm interested to see how many.

    An equally interesting question is: How many have tested negative and been told by a LLMD that they do NOT have Lyme?

    Good luck, whatever that means in this situation, to you.
  3. frango2

    frango2 New Member

    Don't let anyone try to tell you otherwise.... it is simply not true.
  4. mshvan

    mshvan New Member


    I've been around here long enough to know that Lyme sometimes brings up surprisingly heated stuff.

    Nobody told me anything specifically negative about the Igenix tests. I am only asking about this because so many people seem to test positive. Of course, the people who DO test positive would tend to be the ones who mention it.

    I know the standard issue blood tests (quest, etc) are considered unreliable. I'm only asking about the igenix ones because I've seen SO many test positive on it.

    Please, I am not trying to start a controversy, just asking...

  5. frango2

    frango2 New Member

    Believe me... I totally understand. My response was not directed at you. But, having said that I know from experience that this thread is going to go down hill fast.

    I just have to say from my experience, I know many folks who do not test positive at Igenex. I think it is really important that people know that is a fact.

    Good health to you...
  6. mshvan

    mshvan New Member

    Thanks Frango,

    I really hope it doesn't go downhill fast.

    I'm not any more skeptical of Igenix than I am of Quest, Labworks, naturopaths, acupuncturists, rheum's, allergists....etc.
  7. mindblower

    mindblower New Member

    Good question, but more to the point is Lyme tests as commonly done and discussed in this community, for lyme bacteria no doubt, are not particularly meaningful no matter who does the testing.

    A lot of people have been exposed to this bug and the viruses currently suspected by a few researchers as causal to ME/CFS, etc, but by far most aren't sick and lead normal healthy lives.

    Unless any such test can definitively show ACTIVE infection connected to presenting symptoms, it should be considered suspect.

    [This Message was Edited on 09/21/2008]
  8. frango2

    frango2 New Member

    I had been to more Dr's than I can count and had had every test imaginable ( some invasive, some not) trying to figure out what was wrong with me, but no one had any answers.

    My first Igenex test was Indeterminate with Lyme specific bands. My second was positive. I am getting better by treating Lyme and doing Methylation.
  9. monicaz49

    monicaz49 New Member

    good question.
    I also would be curious to know the results of random healthy people. I wonder if they are all positive too!

    Even more confusing though is my LLMD said healthies can definitely turn up positive on Igenex. Its just that their bodies are healthy and supress the bacteria. That it surfaces in us but that we've had it well before we got sick.
  10. mshvan

    mshvan New Member

    Monica and Kathy,

    Thanks very much. Yes, I have finally been pushing to see if Lyme is a possibility. I hesitated for a long time, partially because my docs were certain there was NO chance I could have it (though they have tested me for far more rare conditions at this point)--and honestly, also because sometimes I read what very zealous 'lymies' (no offense) write, and sometimes they seem fairly extreme.

    With that said, if I tested positive, got treatment and recovered after this long horrible illness, I think I'd be just as zealous myself.

    I realize what you're saying about the clinical diagnosis. Even the mayo clinic is saying that at this point. It's a shame though, because there is such an incredible amount of controversy, genuine bad feelings, ridicule (on both sides) surrounding this issue.

    It's funny, as I've looked into this--my regular docs have said basically "no way" could be lyme--and I haven't even had the 'unreliable, standard' tests. Because I live in California, and it just doesn't happen here. At the same time, I came across a brochure the STATE put out, warning people about tick bites and tick-borne diseases here.

    And of course, the LLMD is necessary for the clinical diagnosis. Anyway.

    Thank you for your responses.

    As for Mindblower--I understand what you're saying. Though, I think your last sentence is sort of 'fightin' words'. I'm not criticizing you, but I am hoping this thread doesn't explode into a big controversial thing. I understand completely the concept that an active agent should be found for the conclusion to be reached that a particular agent is causing an illness. However, I think there is a great deal of evidence to suggest--and this is without going into conspiratorial or extreme points of view--that it's not at all always clear if something is 'active' or not. Many very credible and indeed, dogmatic sources concede this as far as various herpes viruses go, for example. It is also certainly true that positive evidence for various infections can become undetectable in the bloodstream after a long infection. Even my by-the-book immunologist at UCLA has told me that.

    Though even having told me that, he's very skeptical of anything he can't find in the blood.

    thanks again.
  11. soleil16

    soleil16 New Member

    I tested overall negative on Igenex test. Had a few IND and 1 positive on a Lyme specific band. Still working with an LLMD to decide if something else is causing all my symptoms, which are "clasically Lyme".
  12. victoria

    victoria New Member

    and as other have said, the answer is yes. IGeneX anyway has only about a 70% reliability rate, and that's the best out of all the labs. It's a hard bacteria to test for as it hides out...

    And then anyway, you have to consider the other infections ticks can carry - tests for them are way less reliable, and you could have one or more of those with or without lyme. the list includes things like mycoplasma, which you'll see has been discussed a lot here. You can also get viruses from ticks.

  13. jess

    jess New Member

    Hi all, I tested negative on the Igenex test. At least Igenex said it was negative. IGM was all negative. Igg band 31 and 39 which are Lyme specific was Ind. I had the confirmation test for band 31 and that was negative. My LLMD is not sure yet if it really is Lyme. I certainly have all the symptoms. I have been sick since childhood and there is a possibility or rather probablility that my body just can't produce antibodies anymore,hence the negative test.
    In my opinion, I have Lyme. The 2 Inds have to mean something. At present, I am being treated for heavy metals. Then my Dr. might try me on antibiotics. Boy I hope I can get some improvement. Oh, I might add, my CD-57 test was 21, considered pretty low. Jess
  14. frango2

    frango2 New Member

    You are right. Sometimes the people who have had Lyme the longest are the people who are not making an antibody response anymore. Also, with Lyme the IgM and IgG don't mean as much as it can in other illness. They have found that even in Late stage Lyme people will have peaking IgM's with no IgG response.

    There are other tests that can indicate if the illness is Lyme. CD57 as you mentioned, and Labcorp's C3a and C4a which are anaphylatoxins that are elevated with Lyme.
  15. ladybugmandy

    ladybugmandy Member

    i was negative for lyme at igenex.
  16. acer2000

    acer2000 New Member

    What is Clongen lab? And what is the advantage to getting tested there?


  17. justlooking

    justlooking New Member

    I don't know where you live in California but I know Lyme has been found in Northern California, Central California and Southern California.
    I currently live in San Diego County and they have warnings on the County of San Diego websites about ticks and Lyme disease.
    I think you can find a map of where and how many cases have been diagnosed in California to take to your Dr. Since you said your Dr was at UCLA, maybe he/she thinks it is uncommon in LA.
    I lived in LA for the past 30 years and only moved to SD a year ago. However, I am not sure what the incident rate is there (in LA) since I never saw it addressed anywhere.

    Also, if I remember correctly, I think why there is skepticism about the Lyme testing labs is a few years ago there was a "scandal" due to the labs not allowing the government to do blind tests, which are required for almost every other lab that tests urine and/or blood. The blind tests are random, some are negative, some positive and it gives a check and balance to ensure there are no testing or chain of custody problems. I don't know if Igenex ever decided to start doing the blind samples or not. If they did then the skeptism should fade with time.


    Editing to say the reason I said "scandal" is that is the way it was headlined in the newspaper article that I read a few years ago.
    [This Message was Edited on 09/22/2008]
  18. grace54

    grace54 New Member

    I decided if I was as sick as some I would try the antibiotics. This is such a complex disease to pin down. I had a few bands on the Igenix that were indeterminate and some said a Lyme Dr. would treat me but the testing still said negative. The Central Florida Research lab test also said negative and when I considered selling my blood for antibody tests the independent lab could find no antibodies and turned me down. By the way they pay quite a lot for your blood if they can find Lyme antibodies.

    As I have said before I grew up in the Adirondack mountains in NY and was bit by something nearly every summers day for 20 years and I figured I would be a good candidate for Lyme. I did the anti's for a month off and on as they made me sick due to an allergy to them and I stopped and finally I got substantially better which I contribute to hormone therapy and nutritional support.

    I can certainly see how some can be so zealous with there message after being sick so long. I suspect many have been introduced to Lyme but they have had a healthy immune system to fight it. I believe we need to try to figure out what allowed our bodies to weaken so as not to allow it to happen again if possible, whether it be stress, nutrition, medications or any of the other various things that we have some control over. We can recover but we must take full control of our health care and find a Dr. who understands the art of healing. There is mo magic pill or anyone else who can do this job for us. By all means get tested but also give your body what it needs to heal itself and stay healthy. Good health to all.
  19. cbs1234

    cbs1234 New Member

    I see two negatives so far and I've counted at least 60 positives on this site. Those odds are too good to be true.

    Also, the LLMD I saw told me he had never seen a negative test in several hundred he had sent to IGENEX. He was shocked that I asked him the question, but he responded honestly. He could not explain to me how that could happen.

    They are also extremely expensive. Someone or some people are getting rich off all these positive tests and the urban legend on racing through lyme circles that Igenex is the only trusted source for lyme testing.

    I wouldn't trust that kind of track record. No one is that good. If it smells rotten, it probably is rotten.
    [This Message was Edited on 09/22/2008]
    [This Message was Edited on 09/22/2008]
    [This Message was Edited on 09/22/2008]
  20. spacee

    spacee Member

    On the front page. On another page, there were a couple of IND and said that it should be retested in 6 weeks.

    I take a Transfer Factor that targets Lyme, don't know if that could have thrown it off.