The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

People's experiences of Bartonella

Discussion in 'Lyme Disease and Co-Infections' started by sianrecovery, May 24, 2016.

  1. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    1,426
    Likes:
    440
    @acer2000 what did yr doc make of yr experience? Who was yr doc? Tnx
     
  2. Erica.N

    Erica.N

    Messages:
    8
    Likes:
    4
    @xrunner
    Hello How is your treatment for bartonella with dr kaufman? I have consultation with him in April 2017, I have many neurological symptoms, many body aches, burns etc. I wonder if you're enjoying treating Dr. Kaufmam? I'm traveling from another country to see it and I'm going to do several tests to investigate what I have. My question is... should I look for an LLMD or if Dr Kaufmam can help. what do you think?
     
  3. xrunner

    xrunner Senior Member

    Messages:
    843
    Likes:
    680
    Surrey
    I pm'd you.
     
  4. Michael_venice

    Michael_venice

    Messages:
    30
    Likes:
    34
    May I ask you the same question as Erica did? I can't figure out how to PM you. Thanks.
     
  5. xrunner

    xrunner Senior Member

    Messages:
    843
    Likes:
    680
    Surrey
    @Michael_venice
    I have never been a patient of Dr K. I was diagnosed in the UK by a rheumatologist as explained in posts n.27 and 36.
    As for the other questions, any LLMD who treats according to the ILADS guidelines, and doesn't mess up with alternative treatments!, should be fine.
    Have a look at Dr Burrascano's guidelines which are quite detailed.
    http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf
     
  6. ChrisD

    ChrisD Senior Member

    Messages:
    198
    Likes:
    388
    East Sussex
    Hi @xrunner , I started feeling ill after a trip in North Spain - had lots of psychological issues like Insomnia/depression/anxiety in 2014 before noticing a striation/stretch mark rash in late summer 2015 but ignoring it as I thought it could genuinely be stretch marks around my hips. In December 2015 I was stressed annd my immunity was low and I contracted what I thought was a common cold (but it could have been anything), suddenly I had reactive arthritis which evolved into Fibro, I have had Costochondritis, Plantar fascilitis, TMJ, Trigeminal neuralgia, hair loss.

    My doctor diagnosed me with ME/CFS, but I have recently had a Lyme test (results not back yet annd only ELISA), but I have a strong suspicion now that I have a BArtonella co-infection due to the way my symptoms present compared to the people in my CFS group. I do have quite debilitating fatigue now but also a lot more pain and bbizarre muscle issues like cracking and popping etc. and the above symptoms.

    Anyway, I don't have the first clue about how to get a Bart test so any info would be much appreciated...
     
  7. xrunner

    xrunner Senior Member

    Messages:
    843
    Likes:
    680
    Surrey
    Hi @ChrisD,
    For testing I'd go to a specialist with cinical experience in treating Lyme. There's a huge difference between a doctor who treats say two cases a year vs. two per week. If you live in the UK that means going private.
    However, at present, I don't know of any UK Lyme specialist I could recommend, also the past few years I've been well enough not to bother keeping up to date with Lyme-related information, doctors, forums etc.
    From memory may be you could ask @Valentijn or @justy or @Sushi they should be much more up to date with info regarding Lyme testing etc
    The only thing I'd say is that I'd not restrict testing to Bartonella but to all possible bacteria connected to Lyme disease.
    Sorry if this is not very helpful.
     
    justy and ChrisD like this.
  8. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,310
    Likes:
    12,094
    U.K
    @ChrisD you can get Bart testing through Arminlabs in Germany from the UK. I agree with x runner tht a general Lyme and co infections panel might be a good idea. Bart is notoriously hard to test for, you may need to repeat the test a number of times. There is a great video on bart by a top Vet who talks about Bart in humans - its posted in the lyme and co infections forum somewhere and he discusses testing issues- its well worth a look
     
    Hutan and ChrisD like this.
  9. Hutan

    Hutan Senior Member

    Messages:
    1,069
    Likes:
    6,431
    New Zealand
    There's a link to the video in my post earlier in this thread - post 26.
     
    justy and ChrisD like this.
  10. deleder2k

    deleder2k Senior Member

    Messages:
    1,121
    Likes:
    4,845
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,822
    No idea. Ask them for the references?
     
  12. CedarHome

    CedarHome

    Messages:
    63
    Likes:
    105
    Don't know but I just got 2 positive results back from them (after prior negatives other places).
     
  13. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,720
    Likes:
    4,334
    Southern California
    Same here Cedar

    Tested positive for Bartonella henselae and quintana via Galaxy IFA

    Don't have any rashes, stretch marks, or pain. Main symptoms are low physical stamina, POTS, and constant lightheadedness
     
    CedarHome and Isaiah 58:11 like this.
  14. CedarHome

    CedarHome

    Messages:
    63
    Likes:
    105
    I have the same symptoms, but can't tell which are Bartonella, which are Borrelia, which are chlamydia pneumonia and which are EBV or maybe HHV-6
    ;):confused:
    But the burning soles of feet in the morning when I was acutely ill let me to suspect Bartonella. Nice to have confirmation, I guess.
     
  15. duncan

    duncan Senior Member

    Messages:
    2,039
    Likes:
    4,475
    I am in most respects a treatment failure. But one of my symptoms that I attributed to Bartonella (I have tested positive to Bartonella antibodies a few times) was bad feet pain. This pain was worst in the morning, but it was problematic throughout the day. I had a podiatrist who said it was plantar faciitis; he was not familiar with Bartonella. I knew the sole pain could be characteristic of Bart, but I did not know who was right.

    I went on a treatment protocol for Bartonella, and after a few months I got rid of the foot pain. I had other symptoms that persist, but my feet improved. My sister, who has a history of tick bites yet refuses to be tested, also has bad sole pain, and also has been diagnosed with plantar faciiitis. She never went on a Bartonella protocol, and she still struggles with her foot pain; she has had that pain for years.

    So, eh, correlation does not equal causation, but I never let her forget that I am the one that right now can stand in the morning without crying out.
     
    Mel9 likes this.

See more popular forum discussions.

Share This Page