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GIGA sequencing Uni Liege Bartonella - anyone had and found out?

Discussion in 'Lyme Disease and Co-Infections' started by snowathlete, May 24, 2013.

  1. snowathlete

    snowathlete

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    My test came back grey zone and I think has been sent for sequencing. Not 100% clear. Anyone had that and got results on what strain they have?
  2. atoska

    atoska

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    Hi snowathlete!
    I was researching the same question you made and came upon your post... did you ever find out the answer?
    I also came up with gray zone and on my test results it just says "Bartonella sequencing at University of Liege". KDM says I probably have an uncommon strain and is treating me for Bartonella.
    I also read somewhere that you had sent blood to Infectolabs and were waiting for the results. Did you get them? I was very positive.. but I am still not all the way sure if it is a reliable test... what do you think?
    Thanks!!
    Andrea
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Infectolabs will send you your results by email if you haven't had them yet.

    How is your Bartonella treatment going?

    Sushi
  4. atoska

    atoska

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    My treatment is going ok.. had a mild herx I think.. I felt more tired, with some mental confusion, muscle weakness and eye pain. But I am back to where I was before abx, or almost there I think!
    Now I want the improvement to come!! :)
    So Infectolabs are the ones that are suppose to send you the results from the GIGA sequencing? Mm... they never sent me anything and I had that test done last December!

    Un abrazo Sushi!
    Andrea
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Good to hear!

    No, Infectolabs would have tested you for Borrelia with their LTT test. They won't send the results directly to you unless you ask. I got my results overnight with an email request.

    Best,
    Sushi
  6. atoska

    atoska

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    Sushi
    Yes! Infectolabs sent me the results of my LTT test ;) They were "strongly positive" (+50, + 30 and +2).
    But were we also suppose to receive the results from the GIGA sequencing? What would those results look like?
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I haven't seen the GIGA results but I understand from some others that, though they send a sample from the PCR test, the sequencing sometimes fails if they don't have a large enough sample. In my case it was "small fragments." If you haven't had a result I'd contact KDM to ask.

    Sushi
  8. atoska

    atoska

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    thanks Sushi! I will contact him!
    I am sorry for my confusion.. but with what results did you get the "small fragments"?
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It was in his report. I assume from the PCR?

    Sushi
  10. atoska

    atoska

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    Sushi oh wow! Well.. if they found fragments.. you have it for sure I would say!
    The guy that I met on my first app with KDM had PCR "small fragments" for Borrelia and he is feeling much better after some months with abx...
  11. atoska

    atoska

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    I also have small fragments!! I just read it on the report! ha! :)
  12. snowathlete

    snowathlete

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    atoska
    Hi Andrea

    KDM said I had fragments too and so the sequencing wasn't able to identify the specific species. I've had a very strong herx reaction to treatment so far (about three months).

    I got my infectolabs result for Borrelia which wasn't as definitive as I hoped. Borderline result, but very low compared to your very strong result. Not sure where I go from here on that. It may be that we just park it for now because the presence of Bartonella is very strong in my case, I think it is my primary problem, and we are treating that. If I am able to kill it and finish treatment, I guess if I am still sick at that point then we will have to look closer at the possible Borrelia.

    So how long have you been on Bartonella treatment and how long did your herx last?
  13. atoska

    atoska

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    hi snowathlete!
    Thanks for answering ;)

    Yesterday I was re-listening to my visit with KDM (I recorded it) and he said that when they find small fragments they don't want to risk affirming that we have Bartonella because the fragments could be compatible with some very very very rare bacteria. But, he said that he looks at our clinical picture (immune profile and symptoms) and he can tell if we have or not Bartonella.

    About your borderline result in Infectolabs... I asked him on my last visit if the stronger the result, the more sure it was that I had Lyme. And his answer was no. He says that the healthier we are (I am mildly affected), the stronger our response is, but it doesn't mean that we have a worse case of lyme or more bacteria in our bodies. How are your lymphocites? Are they low? I know a girl that had to send two times the amount of blood in order to get a positive cause her lympocites were very low so they couldn't respond to the bacteria.

    I think that if you had a positive result he will start you on abx for borrelia...

    I have been on the bartonella and lyme treatment for a little more than 3 months now. (like you!)
    The first two months went ok, with no improvement or herx. On my third month I started feeling more tired, brain fogged, some more knee pain and muscle pain... but not that bad really. KDM told me before I started abx that my herx would be mild. He said that if you had high perforin herxes would usually be worse. (my perforin was ok).

    Now I am better.. I think... but not all the way to where I was before abx...
    It is hard to tell cause I don't have a daily routine in order to be able to compare. But if I think about the things I did on my first two months of treatment.. I think I wouldn't be able to do them now..


    How is your herx? when did it start? What kind of symptoms do you have?
  14. snowathlete

    snowathlete

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    Thanks for passing that on. It's interesting and makes sense (at least within my limited understanding).

    Again, thanks for passing this on. It's interesting and again makes sense I think. I now lymphocutes are not the only indicator of a functioning immune system, but my lymphcyte count is pretty much perfect and has been all the way through my illness.

    Interesting as my perforin is very high.

    I got a herx as soon as I started abx and it got worse for around two months. I think it has been pretty consistent the last month since then at that bottom level. So, I think I am probably not getting any worse still, but I don't know that I have turned the corner into an upward trend yet. Basically everything is worse, I am more tired, my sleep is worse, I feel more fatigued and have more aching and pain, more general malaise. Cognitively I am a lot worse, I can't recall things, retain information, think clearly. I had all these symptoms before treatment too, but not as bad as I do now.

    I hope you start feeling better soon!
  15. atoska

    atoska

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