The 12th Invest in ME Conference, Part 1
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Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

Discussion in 'ME/CFS Doctors' started by Folk, Jul 20, 2017.

  1. Folk

    Folk Senior Member

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    So, I had my first appt with Dr. Kaufman, like 2 years ago. I improved A LOT since then.
    Like, enough to call it a recovery story (even though I still have chronic pain, sleep more than normal etc). I can live a similar life to normal people, with some restricitions and a more effort.
    Now, I don't know if it was his treatment, cause I was already improving before going there but who knows. I like him a lot.

    It seems though now he's focusing on Bartonella for most of his patients. He asked me to do a bartonella test months ago and I still didn't do it cause it's really expensive and I'm from Brazil, which makes more expensive and burocratic to send blood overseas. Adding the fact that I don't know if I trust this tests... At the stage I'm now I probably wouldn't try long course abx... I think the risk doesn't pay the possible reward.

    That's why I'm asking... Since Dr. Kaufman is asking most of his patients to do this test now and he seems to trust it 100% on the results, I would like to know if anyone had positive Bartonella and is treating it. What he is using to treat it and how are your evolution on the treatment?

    Thanks! good luck yall
     
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  2. frederic83

    frederic83 Senior Member

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    Kaufman gaves you Abx ?
     
  3. Folk

    Folk Senior Member

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    I didn't do the test but he said that if it came out positive, yes the treatment would be long course abx.
     
  4. ChrisD

    ChrisD Senior Member

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    I haven't been tested yet but I have the suspicion that I may have a Bartonella infection due to symptoms and the occurence of the stretch mark rash two years ago before onset of CFS and Fibro. After searching through forum posts on Phoenix rising, I have noticed that a lot of people have been diagnosed positive by Kaufmann and I wonder if he is on to something or if this test is totally reliable? I was planning to use Armin Labs in Germany....

    Have many people tested positive for Bartonella from other Doctors or Labs?
     
  5. Valentijn

    Valentijn Senior Member

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    Tests are usually negative, even with 100% confirmed infections. There's about an 80% false negative rate from blood samples, but a skin biopsy might work better.
     
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  6. edawg81

    edawg81 Senior Member

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  7. junkcrap50

    junkcrap50 Senior Member

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    I just sent in my samples to Galaxy Labs and will know the results in about 3-4 weeks. I am not a patient of Kaufman. I do not believe I have Bartonella, but my doctor is sort of out of ideas.

    80% false negative rate for the Galaxy Labs test? What about with the triple draw?
     
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  8. Valentijn

    Valentijn Senior Member

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    It's for all Bartonella tests, as far as I know. It's an organism which hides out in tissues, and is rarely found in the blood, from what I recall. Repeated testing increases the odds of detecting an actual infection.
     
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  9. Jesse2233

    Jesse2233 Senior Member

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    Dr Chheda has me testing for this 3 days in a row before starting Zithromax. Today is day #1 of testing

    Anyone else have experience?
     
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  10. TrixieStix

    TrixieStix Senior Member

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    I am a patient of Dr. Chheda and she requested I do the Galaxy Bart test (dhe ran Bart test via Quest also & was negative) but having heard that it's so hard to get a positive result even if you have it I decided to not spend the $ and skip this test (for now at least).
     
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  11. Diwi9

    Diwi9 Senior Member

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    My Galaxy Lab IFA serology came back: B. henselae - 1:64, reactive; B. quintana - 1:128, reactive. All of my ePCR tests are "not detected," but I have 6 more cultures "pending." Anyone understand how to interpret this?
     
  12. msf

    msf Senior Member

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    @A.B.

    Seems like it´s catching.
     
  13. Firefly_

    Firefly_ Senior Member

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    He tested me for Bartonella via galaxy and it came back negative. I resisted getting a tissue sample for awhile due to cost, but he kept insisting that he thought I had Bartonella, so I finally relented and sure enough it came back positive. Silly me!
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    @Firefly_ what tissue did they sample? haven't heard of that being down for Bartonella
     
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  15. Firefly_

    Firefly_ Senior Member

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    My gp took a tissue sample in my upper arm and it was cultured by galaxy for I think about 3 weeks.
     
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  16. JAH

    JAH Senior Member

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    I did the 3 day blood test and it was negative. He wanted me to do the skin biopsy, which I declined.

    I did a one time blood test with Galaxy as part of a study, and it was also negative.
     
  17. Folk

    Folk Senior Member

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    Same here (as I expected)... Just found out Dr. Kaufman is not at OMI anymore, will contact him soon but I think I already know what the feedback will be.
     
  18. Diwi9

    Diwi9 Senior Member

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    I followed up with my doctor and was told that it means I've been exposed, but does not infer an active infection.
     
  19. junkcrap50

    junkcrap50 Senior Member

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    @Folk

    I got a different interpretation from my infectious disease doctor who's also a CFS and Lyme doctor. He's done extensive reading of Galaxy Lab's papers and other labs' papers on bartonella. He says that after treatment of bartonella, serology of previously positive (serology + AND culture +) patients return with zero antibody titers. He says this pattern is consistent in cats too who've tested positive and are successfully treated.

    He's even had a previous textbook case of cat scratch fever and bartonella cardiomyopathy 10 years go who tested positive but then had negative serology after successful treatment. And this was before bartonella was of interest in CFS and Lyme circles.

    I've tested positive with 1:64 serology from galaxy and negative on culture (my infectious disease/CFS doctor says he's no longer doing Galaxy Lab cultures and thinks Quest IFA - but not LabCorp - is the same methology Galaxy's bartonella serology). He is recommending antibiotic bartonella treatment for me, but I said I'd rather wait and think about it. I'm going to wait and see how his other bartonella serology positive patients do with treatment and see if they have complete removal of titers, before I start antibiotics for it.

    I can't give you an explanation why serology titers for bartonella go away or why a low titer means current infection rather than previous exposure other than the reports my doctor told me about. Perhaps bartonella is closer to lyme exposure rather than say viral exposure. He says that perhaps the low titers may indicate a low smoldering bartonella presence rather than full infection.
     
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  20. Wally

    Wally Senior Member

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    @Folk - I am a patient at the Open Medicine Clinic in CA and a patient of Dr. Kogelnik. Dr. Kaufman was heading up the Galaxy Testing at the Clinic when I had these tests taken. I tested positive on the 3 day Galaxy Test. I am a long time patient of the Clinic. So far, no recommendation to treat for Bartonella based on these test results. I believe, as to my particular case, my doctor was not yet convinced that the Galaxy tests results were accurate (this was a conversation that took place over a year ago). He gave me the pros and cons of the current testing and treatment and I decided that I would wait to see how the tests/treatments worked out for a larger sampling of patients.

    As a side note, we did have one of my dogs tissue sanples tested through Galaxy. This dog developed lymphoma and he was being treated at University of California at Davis Veterinary School. We were able to have the dog euthanized through U.C. Davis, so he (Wally) could do his part for science. The Open Medicine Institute (the research arm) connected with the Open Medicine Clinic was able to coordinate with U.C. Davis to get his blood and tissue samples for their repository. U.C. Davis Vet School also coordinates with the National Cancer Institute to share cancerous tumor samples.

    No Bartonella was found in Rusty's (the dog) frozen tissue samples. I paid for this testing myself, since this was not a test that OMI had planned for in their research budget. Relied on the researchers to decide, whether blood or tissue samples would be best to test for the first round of testing. If Galaxy blood tests are found to be reliable in a larger sampling of human patients, I may offer up the $$ needed for testing of Rusty's blood.
     
    Last edited: Oct 1, 2017

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