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Questioning my lyme results

Discussion in 'Lyme Disease and Co-Infections' started by vamah, Oct 17, 2013.

  1. vamah

    vamah Senior Member

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    Some recent discussions on the forum, along with my symptoms have me questioning my interpretation of my lyme test results. I had testing done by Igenex last year that 2 doctors told me was essentially as close to an unequivocal negative as I was going to get. My research seemed to agree with this conclusion, but now I am wondering again. These are the results I got:

    IFA B Burg. 40 (equivocal)

    CD 57 51

    Western blot IgG
    Band 31 Indeterminate
    Band 34. ++

    Western blot IgM
    Band 39. Indeterminate
    Band 41. +

    All other bands were negative. Any experts who can weigh in? Are there other tests I should get done? Am I being paranoid? I know I have been bitten by deer ticks, but have never had the typical rash.

    I do have hhv6, which could explain the low cd57.
  2. vamah

    vamah Senior Member

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    Missed one. Cd57 lymphocytes -- 3.20.
  3. Ema

    Ema Senior Member

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    I can't say whether or not you have Lyme causing your symptoms obviously but bands 34 and 39 are specific for Bb bacteria. So this is ample evidence in my mind that you have been exposed to Lyme at some point in time. But this may be true for a majority of the population. The difference is that usually the immune system can hold it in check and for those of us with immune dysfunctions, we can't.

    You don't need to have the rash to get Lyme.

    If it were me with these results, I would consider an antibiotic challenge and then repeat the testing. Often times, the tests become positive after such a challenge. Mine did.

    Alternatively you could try the Infectolab testing which is a totally different method.
    maryb, Sushi and SOC like this.
  4. vamah

    vamah Senior Member

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    I'm not familiar with the concept of an antibiotic challenge. Can you explain?
  5. Ema

    Ema Senior Member

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    Sure...if you've had Lyme long enough, it learns to evade the immune system and turns down the antibody response. When you start taking antibiotics, you can disturb the status quo enough to provoke an immune response and a consequent increase in antibodies that can now be detected by a Western Blot test. This is a fairly typical scenario for people with chronic, longstanding Lyme. My second test was MUCH more positive than my first and it was taken about 3 months into antibiotics.

    I don't personally find a 3 month course of antibiotics all that dangerous given that the same abx are routinely prescribed for conditions like acne long term without anyone in mainstream medicine blinking an eye. I would just make sure to keep up on the probiotics to help the gut.
    Sushi likes this.
  6. vamah

    vamah Senior Member

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    Thanks. I will discuss with my doc.
  7. vamah

    vamah Senior Member

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    I am wondering, though, wouldn't being on antibiotics cause problems with getting an accurate test? Or is this just another way in which lyme disease is unlike any other pathogen?
  8. Ema

    Ema Senior Member

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    Antibiotics can interfere with the Infectolab testing, I believe. But I would double check that with them because I can't remember for sure. But I think I remember reading that one couldn't be on abx for 6 weeks or so prior to the test. Maybe Sushi knows?

    But abx don't interfere with a standard Western Blot done through IgeneX. In someone with symptoms strongly suggestive of Lyme, it isn't uncommon for doctors to do an antibiotic challenge and then retest.

    Ema
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, you have to stop abx before the Infectolab test but I don't know for how long. There contact information is here: http://www.infectolab.de/index.php?id=37&L=1

    Sushi
  10. vamah

    vamah Senior Member

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    What are the logistics of sending a blood sample from the US to Germany? Is it very expensive?
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The biggest problem is whether you can get your sample there fast enough. I have sent blood to Belgium for about $75 for the fastest possible delivery. Problem is that they couldn't guarantee delivery time. I tracked it and it took 30 hours by FedEx.

    Sushi
  12. vamah

    vamah Senior Member

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    Since I am currently taking zithromax for a sinus infection, I am thinking it may make the most sense right now to talk to my doctor about the antibiotic challenge test. I will make an apt next week. Do you know of any resources I can show him to support this? He is not a lyme or infectious disease specialist, but he is very open to new research developments.
  13. Ema

    Ema Senior Member

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    A quick googling turned up these which all discuss the use of an antibiotic challenge:

    http://lymemd.blogspot.com/2009/01/lyme-and-cdc-tangled-web.html

    http://www.jemsekspecialty.com/lyme_detail.php?sid=12

    http://www.evergreencenter.net/conditions/lyme-disease/

    There isn't one standard challenge protocol...abx are selected based on the symptoms and history because some work better than others, especially if coinfections are involved.

    But a doxy/macrolide/flagyl-esque protocol would be pretty typical.
  14. vamah

    vamah Senior Member

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    Thanks. I had heard that doxy was BAD for chronic lyme. I think because it increased biofilm (I may be remembering that wrong). One of the many pieces that has made me suspect lyme is that I was on doxy therapy a couple times, for 6 mos or more, for other medical issues.
  15. Ema

    Ema Senior Member

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    Doxy is one of the most commonly used abx for Lyme. It only works on the spirochetal form though so it needs to be used in combination with other abx.

    I've not heard that about doxy increasing biofilms. I've had good luck with lumbrokinase in that regard.

    Did you feel any better while on doxy?
  16. vamah

    vamah Senior Member

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    Honestly, I can't remember. It was more than 10 years ago. In my opinion, I was already sick then, but the symptoms were so intermittent and various that I didn't connect them at the time.
  17. vamah

    vamah Senior Member

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    Ema

    So it suddenly occurred to me that what I thought was just a post-illness crash may actually be a herx reaction. I was taking zithromax mon-sat last week for a sinus infection. Infection has mostly, but not completely cleared up, but the past few days I have actually felt worse than when I was sick. I assumed it was pem, but I'm having symptoms that are not typical of pem for me -- dizziness, inability to read without getting a headache -- but I now realize I had when I first started taking valcyte for hhv6. The crushing nature of my fatigue is also the same.

    So I really think this is some kind of herx and lyme is the first thing I think of. I haven't been on abx for anything in over 3 years. Does zithromax kill lyme? Can the herx take almost a week to happen and after I stopped abx?

    Going to the doctor tomorrow and still confused about the antibiotic challenge. I see places that say you should take abx for 2 weeks, others say 3 months. And do you need to be off abx for a couple weeks before doing the actual blood test? Like I said, my doc is very open minded, but I don't know if he will be familiar with this test and I want to give him good info.

    Thanks for any advice you can give.
  18. svetoslav80

    svetoslav80 Senior Member

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    vamah, have you ever been vaccinated against lyme?
  19. vamah

    vamah Senior Member

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    No.
  20. Ema

    Ema Senior Member

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    Yes, azith does have some activity against Lyme bacteria, specifically it is thought to work well against the l-form of the bacteria (with the other forms being spirochete and cyst).

    The symptoms you describe are the ones I get from Bb...specifically dizziness and headaches. Of course, they could be from other things as well unfortunately.

    There aren't any cut and dried rules on the abx challenge. I would think 2 weeks would be a bit short and 3 months a bit long. If it were me, I would aim for 4-8 weeks.

    You only have to be off abx for the testing if you are doing the Infectolab testing. A typical WB like done by IgeneX is not affected by abx.

    It would be unusual for a herx to start a week after stopping abx. But I would never say never...more likely a flare up of symptoms or the immune system.

    Let us know what the doctor says! I hope you are able to work out a plan that feels right to you...

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