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Just found out I have active lyme disease. I am stunned. Help!

Discussion in 'Lyme Disease and Co-Infections' started by lizw118, Jun 17, 2012.

  1. roxie60

    roxie60 Senior Member

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    Thank you Ema, I feel blessed to have you here sharing your experience!!! I think I was just frustrated when I wrote that I'm just so tired of never getting better and now this too.....just weary of the dance. Is the full panel of any usefulness or is just #188 and #189 sufficient? Not sure I get a choice cause what the doctor gave me includes all the ones I listed. I think I need to find an LLMD. I dont want to spend another 5 years poking around this, who knows how long I have had it if I have it.
  2. roxie60

    roxie60 Senior Member

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    For others who are on the Lyme quest I just called Igenex and here is the break down on costs

    Panel 6050 - $475.00 (includes IFA, IgG & IgM Western Blots and PCR(whole and serum). I was told IFA is just an antibodies titer test (thought that was the IgG and IgM?)

    Panel 5010 - $410.00 (same as above except IFA not included)

    Panel 5095 - $780.00 (most complete panel Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Bartonella IgG & IgM, Bartonella FISH)

    there are other panels that are variations on these and was told individual tests can be ordered. How does one decide which is the most likely to be useful?

    I'm in education process once again - can I conclude that non of these tests are the Lyme ELISA antibody test I had last year? Guess what I'm asking is non of these tests are a repeat of the typical ELISA test most drs run?
  3. roxie60

    roxie60 Senior Member

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    Easy to see how people with chronic illness end up in poverty, such a shame. Wonder if my insurance will cover any of this or will it be all out of pocket. If OoP I really want to be sure I'm getting the most useful test.
    Delia likes this.
  4. roxie60

    roxie60 Senior Member

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    Looks like the IFA maybe a repeat of the ELISA (looks for IgG and IgM response) so maybe can save $65 and go with 5010 panel. Anyone know for sure if the IFA from Igenex is in fact just another name for the ELISA test, guess I need to call them a third time today.

  5. Mog

    Mog

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    Sushi, no I've not had the Bartonella PCR. Don't think they do it at Infectolab. Where did you get it done?
    Thanks Ema and Snowathlete for the advice re Bartonella. Just re-read your article about it, Snowathlete.

    Going off at a bit of a tangent - if my CD57 is so low (12), why do I react badly to echinacea? I've noticed over the last few years that it doesn't seem to agree with me, making me feel worse. It's an immune stimulant, so should it not be good for me if my immune system is suppressed - or is it like flogging a dead horse, my immune system can't cope with any extra stimulation? I don't think I do well on olive leaf or beta glucan either.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My PCR test was done at Redlabs.

    Sushi
  7. roxie60

    roxie60 Senior Member

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    How does one determine what stage or phase of Lyme one has?
  8. Mog

    Mog

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    My mistake, they do do the PCR test for Bartonella at Infectolab, but I didn't have it done. Is the result of it reliable / conclusive enough to say whether you have Bartonella or not?
  9. Ema

    Ema Senior Member

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    Lyme is typically referred to as either acute or chronic.

    Conventional medicine is not convinced chronic Lyme exists though they are willing to accept a post-Lyme disease syndrome. LLMDs see chronic Lyme in their practices every day.

    I typically think of acute Lyme as within the first three months and chronic Lyme thereafter.

    Ema
    roxie60 likes this.
  10. roxie60

    roxie60 Senior Member

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    So it is likely I am chronic Lyme (if I'm Lyme - I dont know what to believe anymore). With a CD8-CD57 result of abs 55 and 1.9% could not tell what stage Lyme that implied so now I get it is dependent on if you were recently infected or have been fighting symps for years :mad:. Just ordered the Igenex kit for the 6050 Initial Lyme panel testing. Was told it will take two weeks to process once they receive the kit back. Anyone know if blue cross blue shield covers this test? it is almost $500.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    PCR is checking for the DNA, so yes, reliable -- if they find it, but it is hard to find in the blood as it is an intracellular infection.

    Sushi
  12. roxie60

    roxie60 Senior Member

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    Thx, Dr wants the 6050 test ($475). Takes two weeks to process once arrives back at Igenex. If I have to co-infections also that is another $780. How can this be so damn expensive when it seems hundreds of thousands are infected.

    My mom is asking me do I have Lyme. I'm not even sure. All I can tell her is I have had a CD8-CD57 test that indicates chronic, persistent Lyme (per Igenex web site even tho it is not 100% specific for Lyme). Now I have to take this additional test to determine what kind of Lyme and if it is negative I have to get co-infection tests to see if different variety of Lyme.

    If I understand, co-infection just means one can have more than one variety of Lyme infection. How does one explain Lyme disease to family / friends when I'm still trying to understand it.
    Valentijn likes this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    roxie60

    Co-infections aren't exactly different varieties of Lyme, they are other infections passed on by ticks, horse-flies, mosquitoes, etc. or mother to child. They each have somewhat different treatments, though they overlap.

    Medicare pays for IgeneX, not sure about other insurances, but sure worth checking.

    Sushi
    Valentijn, merylg and roxie60 like this.
  14. roxie60

    roxie60 Senior Member

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    Amazing info in these videos regarding Lyme. Looks like another rabbit hole disease that insuers and octors dont want to recognize similar to ME and CFS/CFIDS. Why cant I have something that is not a constant battle for recognition and support. argh I'm in a bad mood. Got to spend more money to find out if I have something that once again has no real medical and insurance support.
    Mog and merylg like this.
  15. Mog

    Mog

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    Anyone know the answer to that?
  16. Ema

    Ema Senior Member

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    I don't think that CD57 cells predict whether one is Th1 or Th2 dominant. So I would guess that if you are already Th1 dominant, doing additional things to boost that arm might not be helpful.

    You might also have an allergic sensitivity to echinacea. It is related to ragweed.

    But I'm not even sure that the Th1/Th2 shift theory holds much water.

    Also some extremely ill people have high NK cells and some well people have low NK cells and vice versa. My LLMD doesn't find them all that helpful anymore. Some people also get better and their NK cells remain low.

    So the above is just a guess because I don't put too much stock into either Th1/Th2 or NK cells as predictive of anything in particular.

    Ema
  17. Mog

    Mog

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    Thanks very much Ema.

    What is the test for Th1 / Th2 dominance? I haven't had that done.
  18. Ema

    Ema Senior Member

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    I've only heard of one test for Th1/Th2 dominance. It was done by a specialty lab and it was pretty expensive. I can't remember it offhand unfortunately. If you are really interested, let me know and I will dig through my notes. I didn't pursue it because I wasn't sure if the theory made all that much sense.

    Otherwise, I think it is determined by symptoms and reactions to things that are known to boost one side or the other like echinacea. There is also a whole list of Th1/Th2 shifters out there on the web if you google.

    Sorry, it's been a while since I looked into all this and my memory is not all that fresh!
  19. Mog

    Mog

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    That's fine, thanks very much. I'll google it. I'd seen it mentioned a lot and thought it must be determined by a test, because people seemed sure that they had it.
  20. Ema

    Ema Senior Member

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