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What would people do in my shoes

Posted , 6 users are following.

dave79217
dave79217

Hello again, just interested to know what others would do in my shoes, I've been on antibiotics now for over 6 weeks after having two rashes, 10 days later went the docs and he put me on 14 days Doxy 100mg x2, after around 8/9 days so about 18 days after getting bit I started to feel dizzy and off balance, I got another 3 weeks Doxy then went to a private clinic in Hemel Hempstead for more testing and he prescribed me a month Cefuroxime 500Mg x2, all in all I've done over 6 weeks antibiotics and the dizziness and mild fatigue (crappy feeling) is still there, I got my second Blood test back from Porton down tested 6 weeks after bite and it was negative at C6 0.601 and the month before was 0.598, now the reason I'm posting is my anxiety and now depressiion has beaten me and I'm in a bad place, I had my immunology test back yesterday from the private clinic and was fine, no abnormalities to report, I just feel that if it was Lyme my symptoms would have gone now after 6 weeks antibiotics starting 10 days after noticing my first itch (rash) and I'm thinking the antibiotics and Citalopram I'm now taking are making me worse 😞, I don't get my private Lab Lyme results back until 4th November, do I carry on with the Meds even though they're not working and my mental state is declining rapidly or what ? Opinions would be greatful

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  • princematt
    princematt dave79217

    Posted

    Hi Dave, afraid I can't comment on the efficacy/treatment patterns of antibx because, unfortunately, in my experience no antibiotic has had a great deal of effect on my Lyme symptoms (got a positive blood test four months after bite/rash and then took two separate courses of doxy). But everyone is different and they may start working for you.

    Are you currently 'detoxing'? ie, no wheat, no sugar, no booze, epsom salt baths, lots of greens and fish etc etc? I would really recommend you try that, even just for a while. It's the only lifestyle choice I've made that has had much affect on my symptoms, including anxiety/mild depression. 

    • dave79217
      dave79217 princematt

      Posted

      Yeah I've been doing most of that tbh mate, did your C6 test come back positive ?

      If the Meds aren't working is it any point even continuing them then ?

    • princematt
      princematt dave79217

      Posted

      Yep, blood test was strongly positive.

      I can't say for sure to give up your meds, but they didn't work for me. I regret taking so many antibx now because my gut is still in a pretty rubbish state three years on. 

    • dave79217
      dave79217 princematt

      Posted

      What are your symptoms ? mate

      If you don't mind me asking ?

      Do you have pain and if so how bad ?

      I have no pain other than little minor shooting pain every so often but I think that's stress..

    • dave79217
      dave79217 princematt

      Posted

      And do you work or has it had a really bad effect on your life ? I had bad anxiety to begin with and all the worrying has sent me off the scale, that's my only real symptom other than occasional dizzy spells

    • princematt
      princematt dave79217

      Posted

      Well I'm three years on now from a positive blood test and still have very bad eye/head pain and freezing hands/feet. My diet changes and Chinese herbs helped a lot of other symptoms though - for example, my really cripping back/spine pain completely disappeared when I gave up sugar and wheat completely.

    • princematt
      princematt dave79217

      Posted

      It has had massive effect on life, mild anxiety and intolerance of loud noise/crowds/bright lights. Also terrible fatigue and head pain, but they are all improving now. I hope you start improving soon.
    • dave79217
      dave79217 princematt

      Posted

      Cheers mate, as I say take away my anxiety and I'd be back in work today, a little bit of fatigue and dizzy spells I can deal with and pain hasn't been an issue

  • Jo-Anne1803
    Jo-Anne1803 dave79217

    Posted

    I personally would continue with meds until you get your private results back. I suspect if you get any positive bands on your test your antibiotic protocol will be adjusted accordingly by your private doctor. The nhs recommended antibiotics are turning out to be pretty rubbish against this infection in reality. On the flip side you don't just wake up feeling better with Lyme treatment it's a long long process alongside symptoms sometimes getting worse too. There are cases of people who have started antibiotic therapy immediately and still needed long term treatment too with many ups and down.

    Hopefully you get answers soon.

    • dave79217
      dave79217 Jo-Anne1803

      Posted

      Cheers Jo, i started on Doxy 9 days after getting my two rashes, one on my calve and one on my bicep, neither were bullseye rashes, I think it was a mosquito because the next day me and a friend were both itching like mad but his were small red dots and mine expanded after itching them for days, but I didn't feel any different, it wasn't until another 9 days after starting Doxy that I started to feel a bit lethargic and dizzy, the dizziness went a way for a while and comes back, it's only very mild tbh, but all the worrying has really affected me because I was bad with anxiety for years and it was at its worst before all this started, and the uncertainty has just sent me round the bend, I've had two negative C6 tests so far so if all my tests from My private clinic come back negative I'll have to stop taking the Meds and put it behind me then and try and get on with my life

    • vicky89033
      vicky89033 dave79217

      Posted

      hi dave, im sure antibiotics affect results and may cause false negatives. have you had the immuno blot and extended lymes panel for co infections done? NHS test these at porton down  but your GP would have to print off the public health england blood form from their website. there is also a GP advice line on there.
    • dave79217
      dave79217 vicky89033

      Posted

      They didn't do that one as I had to clear negative C6 test, so I've went private, get all my results by Nov 4th

    • vicky89033
      vicky89033 dave79217

      Posted

      hi dave, i had 3 negative C6 test before my GP sent blood again with the correct blood form and wrote on " please inc. immuno blot and extended lymes panel for co infections" then i got a possitive result on the extended panel for a co infection which proved i was bitten by a tick ( although i dont remember it and never had the rash) its worth doing

    • dave79217
      dave79217 vicky89033

      Posted

      Did you take antibiotics straight away ? I've been on Doxy 5 weeks 100mg x2 and Cefuroxime 500mg for nearly 2 weeks, and I'm still getting the symptoms of dizziness and fatigue now

    • vicky89033
      vicky89033 dave79217

      Posted

      hi dave, no i think ive had this for 3-4 years and its only this year i was properly tested and then i was only given 1 x 100 doxy a day for 2 weeks. you have the best chance if it is lymes to have it treated very early. hope you get the correct result on your test and it has been treated. its known that doxy does make you feel worse when treating lymes but i would see how you feel after the course
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