Home Forums General Discussion Hello again any advice please.

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  • #464067
    Joannemar
    Participant

    Hello after a long time away. I first joined about 9 years ago as Joanne60, but lost my e mail access and struggled to log in until I re registered with current e mail.
    Long story short I was diagnosed with Lyme disease in 2007 and treated by my GP on antibiotics for 12 years. Various combinations but over recent years was able to maintain reasonable health on intermittent clarithromycin 1 week in 4 and sometime one capsule every 3/4 days also helped.
    My lovely GP left our practise and current GP refuses to treat so I am wondering if one of the AP doctors might help.
    My nearest one I hear is in Banstead started by Dr Horner who it was my privilege to meet when I arranged for him to be invited to the ILADS conference in London 2014.
    I am allergic to Doxycycline so not sure that Minocycline would be suitable for me, which I know is often the antibiotic of choice.
    From experience do you think such as the Burghwood clinic would prescribe clarithromycin as AP.
    Would I need to get a copy of my medical records as I don’t have a positive lyme test (surprise surprise) just a clinical diagnosis by a lyme doctor in Cardiff who no longer treats lyme.
    I am well aware of LLMD’s or lack of them that are available in UK and not seeking heavy duty tri therapy as I always relapse so until new research shows more promising treatments I just want to be able to maintain reasonable health on low dose antibiotics.
    Any advice will be appreciated.
    My blog https://lookingatlyme.blogspot.com/

    #464074
    aboyer
    Participant

    Maybe find a functional medicine doctor or another PCP. I’m currently taking Clarithromycin that my primary gave me. He’s letting me try it out for 3 months to see how I do. How long did it take you to start feeling better on the clarithromycin?

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg, doxycycline 50mg, cbd oil, and celebrex

    Supplements: fish oil, vitamin b12, folate, b6, iron, selenium, zinc, vitamin c, and biotin

    #464085
    Maz
    Keymaster

    Hi Joanne,

    Although not ideal for Lyme disease to take low dose AP, it’s understandable to want to find some degree of tolerability and quality of life after years of Chronic Lyme.

    If you click on the Resources tab above and then hit the Doctor search option in the drop down menu, you will find links to request both the AP doc and LLMD international doc lists. Just click on those and follow the instructions carefully to receive emailed list choices. It’s a one-use system, so best to optimize its value by choosing 3 country lists just to keep on hand.

    The other option is to follow Aboyer’s insight to search out a local private integrative, holistic, or functional med doc who might be open to helping.

    Good luck in your search!

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