even after possitive test for co infections doctor still not convinced its lymes

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I am gutted after finaly getting a possitive result from porton down ( co infection anaplasma) my GP has considered refering me to infectious diseases specialist but no rush and doesnt think my symptoms- all possible lymes are connected. lymes action have said they will write to my GP but havnt yet and i cant get a responce to my emails. any advice on what i can do now

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  • Posted

    Hi Vicky, really sorry to hear that your doctor is not being supportive now that you have had a positive diagnosis. It could be, that he has no idea about Lyme Disease and is sending you off to someone who is a little more clued up, however ID specialists can be hard to reason with over Lyme too. It might help if you do a little research and present it to him, and try and work with him in a treatment plan. If you join the Lyme Disease Action group on Facebook, there is a wealth of information on there as well as a great supportive network of folks.

    I hope you get better soon.

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  • Posted

    Push for the infectious diseases referral.

    You have a tick born infection with positive results to back up. They should treat accordingly, if they don't when you have active symptoms complain to the local pals department at that hospital, (for goodness sake if they don't treat positive results we really are flogging dead horses with any hope that things are changing).

    However the treatment you do get is highly likely to be completely inadequate, if I were you I would hope for some IV antibiotics and then have a follow on plan to continue antibiotics with a Lyme literate doctor. Symptoms dampening down does not mean Lyme and friends are gone! I was told after a course of antibiotics it will take time for symptoms to disappear. They didn't disappear, things got a lot worse. Have the long term plan.

    Ps infectious diseases consultation is usually an experience in itself. Dont speak about 'Lyme' too much. Your symptoms and results should do the talking. Take somebody with you. Male in my opinion.

    Good luck hopefully a correct diagnosis will get gp on side.

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  • Posted

    thank you for your replies, I am going to take an advocate with me when i finaly get to see a infectious diseases specialist and will be going with all the info needed i am used to doctors being dismissive. Im sure the result ive had can only come from a tick so you would think this is enough to get treatment. Its been hard enough getting this tested properly ive been posting on this forum for  weeks 1st with bloods going to wrong lab then 2nd getting lost in post and 3rd taking 8 weeks to get results! even had to get my local MP and PALS involved its so hard. My GP told me to forget about it but this disease has ruined my life and no other specialist or numerous test have come up with anything else.
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    • Posted

      the only thing we need 'to forget about' as patients is the idea of getting any decent help off the nhs!

      the last thing we need with this disease is to be battling. Yet that's all we seem to do. My results went missing too. I mean you couldn't make half the things up we have to go through. I don't trust the medical knowledge of 99% of uk based doctors when it comes to this disease.

      It's a complete circus.

      Infectious disease took about 6 weeks for my appointment. Do post and let us know how you get on.

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    • Posted

      I take it you got a possitive result (when your results were found) Its really bad what everyone has to go through to even get a doctor to test for lymes and even when ive given my GPs information from lymes action they gave it back to me, wouldnt look into any advice from public health england and one doctor even said "whats that" when i mentioned lymes. How did it go with infectious diseases? hope you have now got the treatment you need and are beggining to get better
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    • Posted

      Yes I had evidence of 'exposure' in mine. They should really now be doing the extended Lyme panel on all potential Lyme patients you shouldn't have to go back and forth to gp telling them how to do their job it's all so back to front. Yes totally agree gps generally have no interest in Lyme information offered to them by patient. Infectious diseases Seem VERY uninterested in Lyme. People generally walk away from those appointments angry, insulted and disillusioned. My appointment was spent telling me I had Lyme and now I have something else mimicking Lyme - (Like I said you couldn't make these things up) and doxycycline absolutely cures all Lyme! (It quite openly doesn't). I wonder how many dogs get diagnosed with chronic fatigue syndrome or psychosis when they go in with tick bites and a months worth of antibiotics hasn't gotten rid of it. Very few I imagine. It's madness.

      Fingers crossed you get an open minded specialist who has common sense not dictated by outdated guidelines. You absolutely should with positive result?

      I get help privately. It really shouldn't be this way. Shame on the nhs helping keep people sick. Still no sign of change.

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    • Posted

      Ive considered going private as NHS dont seem to want to help. funny family were saying at weekend i would have more luck going to a vet! Im hoping specialist doesnt just fob me off but am expecting it. My GP still doesnt think it lymes and im now douting the result but as far as i know the only way to have anaplasma in your blood which i obviously do is to have been bitten by a tick. Its awful how you end up not even believing yourself
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    • Posted

      yes they definitely have you doubting yourself! Been there felt that! but the co infection positive result should prove a tick born infection to yourself. If you can afford to I strongly advise you to go private. Obviously wait to see what infectious disease offer but have a game plan because the treatment will unlikely be enough for a long standing infection. Have you ever had antibiotics for it?
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    • Posted

      thanks for your reply, yes my GP gave me a 2 week course of doxycycline about a month ago ( to shut me up i think! ) i was worse while taking them it was really bad even had a black tonge,stomach and headaches were worse
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  • Posted

    Just a quick update, lymesdiseaseaction have sent a summary and advice letter to my doctor they have also suggested a specialist in the north of England. I am now hopeing the refferal will be quick so i can begin some treatment the symptoms are unbearable now and seem to have rapidly got worse over the last 3 mths. Is it part of lymes to have different symptoms daily some days my gastric problems are the worst then the headaches then the nerve and muscle pain. Its crazy every part of my body is affected with weird what seem to be unrelated symptoms.
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    • Posted

      Only just saw this post yes all 'normal' in lyme. I remember thinking if I could just get rid of that problem life would be 100 x better but then another would come along and life would be no better, I have huge gastric problems that come and go, pins and needles that come and go. Chest pain and tightness just countless things, some really strange some scary, I used to run to doctors every week with every new problem. Now I just learn to ride it out (alongside strong pain killers!) gp is happy to provide those. My symptoms are greatly increased during certain parts of my monthly cycle. I went through a stage of it being unbearable it was a absolute hell, I had no life because of it, I remember starting probiotics and certain vitamins and it helped calm things down slightly, then I started antibiotics and that's when the real ups and down. Not treating is horrific and treating can be horrific!

      Nothing is straightforward with this disease! Good news about the charity approaching your gp. Make sure a copy is put on your file and not just binned!

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  • Posted

    Hi Vicky

    How long ago did you get lymes and did you get a posative test for lymes as i was posative 10 years ago ive just been re tested for lymes which was negative but i want an extended test as i have have lots of health issues im trying to sort does anybody know if infection can stay in the body for 10 years then re apear

    Vicky how long have you had anaplasma

    Regards Craig

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    • Posted

      hi craig, i think i got this in 2012 but unsure. i tested negative for lymes on ELISA and western blot but pushed for extended lymes panel with advice from lymes action and got a possitive for anaplasma co-infection. sorry i dont know if lymes can stay in body for 10 years or re appear. if you post a new disscussion on this forum im sure you will get better advice or contact lymes action
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  • Posted

    Hi Vicky

    Did the course of doxycycline antibiotics help with your symtoms or do the doctors prescribe other treatment if you have anaplasma can you list some of your symtoms its interesting to see how they compare to mine

    Headaches joint pain mainly in the hands facial numbness right side very bad tinitus fatigue irritable. shall i keep requesting the extended test or is it a waste of time

    craig

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    • Posted

      hi craig, the doxycycline made me even worse but that seems to happen with lymes the course was only 2 weeks 100mg not enough to see any change. as ive had this so long i think i proberbly need IV treatment and long term treatment. my symptoms have progressed and are extensive but are joint pain-mainly neck,knees,wrist and hands headaches/migrains,tinitus,virtigo,balance problems,numbness-hands,feet and facial mainly left side,nerve pain-tingling,burning,stinging,neck and shoulder pain, blarred vision,dental,jaw pain gastric problems,brain fog,palpatations,muscle twitches and spasms,random itching the list is endless. i would still keep going to get the extended lymes test it took alot of effort but the only way ive got anaplasma is from a tick and it also makes results for lymes more difficult so explains negative test. dont give up keep asking for the test you need. i printed off the Horowitz lymes questionaire (just google it) and filled it in for my GP and got help and advice from lymes disease action who have written to my doctor to support me-good luck
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