at my wits end with GP not listening or helping

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my health is going down ill fast and i cant get any help. My GP has told me they have ruled out lymes and thats the end of me having anymore antibiotics as they have had test results back-negative, not true as lymes action have told me extended lymes panel is still being tested at porton down. they have no idea why im so ill as other test and specialist reports have shown no obvious causes. Im at a loss to what i should do and am concerned im not going to get any hel or treatment. my doctors have watched my health decline and theres no urgency to do anything. ive asked to be refered to infectious diseases and they actualy said why! ive been so ill ive been unable to go to hospital apts and when i did attend the eye clinic was so bad the doctor sent me to A&E were they found my blood sugars were 12 then dropped to 2.4 ive never had this before and im not sure its anything to do with lymes but it was scarey i was shaking from head to foot,nearly passed out and my heart rate was fast a sweat drink stablized it. ive also had a headach for 5 weeks thats affecting my vision. ive also got what seems like vertigo (not spinning but dizzy head moving feeling when sat still) worsening of nerve pain and weakness in both arms and painfull,neck pain and cracking can hardly move it also weight still dropping(under weight and malnurished) jaw and facial pain unbearable. the doctors have done nothing but give me endless pills that havnt helped(gabapentin x3 daily,diazipan x3 daily co cordamol 500mg x6 daily) can anyone suggest what i should do to get help to stop my health decline further im housebound and suffering-vicky

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    • Posted

      thanks for your replies the first one has been moderated? private message me if you how to do this. how can i refer myself? the crazy thing is one of the GPs at my surgery had lymes herself caught in the uk!
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  • Posted

    Oh Vicky this is not on , they can't rule out Lyme disease , there is a Doctor in Winchester a Dr Matthew Drysden I saw him under nhs , I'm not sure if you can still get to see him as his clinic I believe was shut down but it's worth a try ! I'm so sorry you are having an awful time I know this oh so well myself , change GP surgeries they are ignorant to Lyme disease and this is widely becoming an epidemic ! if they have ruled everything else out , Lyme seems the only cause to me it is tricky to treat and 2 weeks or 4 weeks isn't going to work especially if it's advanced ive been on antibiotics for 2 and half years and still not completely well it takes time, you need support not and compassion from a GP that will be understanding , you are not alone !!!! ️️xxxx Kelly
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    • Posted

      thanks for your reply and ongoing support. im waiting for a call back from my GP at the moment im going to ask what they plan on doing about my declining health and if they continue to dismiss everything i say i will have to leave the surgery and go elsewere. I really dont want to do this as i cant be sure they will be any better at a different surgery. No one i know can believe the state im in and getting no help from doctors duty of care doesnt seem to exist at my surgery. Even if it isnt lymes they havnt suggested looking into anything else even with my blood sugars all over the place they havnt done a simple blood glucose test. there reply "eat chocolate biscuits"
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    • Posted

      another good quote from my GP theres more chance of me being abducted by alliens than having lymes!!!
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    • Posted

      hi ive finaly got my results back from porton down havnt heard from doctor but lymes action have emailed me co infection anaplasma is positive! they are going to write to my GP an want me to see infectious dieases.
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  • Posted

    Sorry to hear you're going through this. Changing GPs is probably the last thing you feel like doing but it sounds like you should try. If you can have an informal chat with a different GP about your situation and whether they would be sympathetic re. Lyme tests etc, that will give you a good marker on whether to change GPs. Unfortunately the NHS are pretty clueless on this. I would love to recommend Dr Matthew Dryden in Winchester but I'm afraid I don't have much faith in him either, having seen him three times and not got any real advice, despite having proven Lyme serology.

    Am sure you've been told this already, but a detox diet might help with how you're feeling - no sugar, no dairy, no (or very limited) booze, Epsom salt baths in the evening. Good luck, you're not alone.

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    • Posted

      Awww matt that's some great advice there ! You saw Dr Matthew Dryden also ? I saw him twice I felt same as you though ,did you see him private or nhs ? I feel there advice is completely different if you go private they talk about intravenous antibiotics etc it's such a shame that they can't be as forth coming on the nhs ! he told me I would be cured in 5 years lol however I have great GPs and am on combination of antibiotics I feel im making real progress now , what about you ? I agree about the detox diet it helps so so much !

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    • Posted

      Yep I was referred to him by my GP a few years ago.

      I'm glad you mentioned antibx and that you're making some progress, may I ask what combo you're on at the moment? I started taking fluconazole about five weeks ago and it's literally the ONLY treatment I have found that had any effect on my health - I was feeling pretty good for about two weeks, though have now slipped back again. As a result of this, I am thinking that I probably would benefit from intravenous antibx, but as you say that is an absolute no-no on the NHS... 

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