Lyme disease test results.

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So my test results for Lyme came back negative and i was told i was fine. Knowing how bad the tests are i called the centre back and asked for antibiotics just incase.  just been given 1x 100mg doxycycline daily for 15days. I was bit around 6weeks ago, only experiencing mild symptoms.  Could one of you guys take a quick look at the picture of my rash and let me know if its definatly Lyme. I first noticed the scar when it was about 1'  before it grew to about  7'. Also do you think my doze and course seems okay. From what I can tell most ppl seem to be on a much higher doze. I would rather get a little ill from the drugs side affects than spend potentially the rest of my life suffering from Lyme.

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16 Replies

  • Posted

    hi your right to think this dose isnt enough it should be 100mg twice a day not just 1 a day. tell your doctor to look at the NICE guidelines they cant dismiss this as its the go to guide for dosage. it may be worth asking a chemist to look up the guidelines and write it down for you just incase your doctor trys to fob you off. your right you dont want to end up with chronic lymes for years of debilitating symptoms-good luck youve caught it early so should make a full recovery
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  • Posted

    That looks like EM. My understanding is (and I know there's conflicting opinions on this) when you have the EM tadh, you have Lyme, no matter the test results.

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    • Posted

      Sorry ... I went to edit that and it posted! 😜 ....when you have the EM "Rash", you have Lyme, no matter the test results. 15 days would never be long enough, and I believe it should be 200-300 mg a day (100 mg in a.m. and 100-200 mg at night, 12 hours apart). In your shoes I would start the meds asap (and take 100 mg twice a day) but request a longer period of treatment at the appropriate dosage. And you need to be treated by a LLMD (Lyme Literate Doctor), not just any physician. Consider yourself lucky that you have the rash as now you know you need to treat it and do so aggressively. Unfortunately many of us go years undiagnosed. Good luck!

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  • Posted

    Thanks guys, starting 2morrow I'm going to take 200mg instead of 100 and I'm also going to try contact a Lyme specialist ASAP. I will also ask my local chemist if he can increase my doze but if he is unable to do this then i will ask him to check the NICE guidelines so I can show to a doctor. I will let you know how I get on. I don't mean to sound selfish by only talking about my problems as I know many others are in real pain with this disease. Normally I would just rely on a doctors desicion but they realy don't seem to be taking this serious at all.

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  • Posted

    I contacted the doctor today to explain about the doze and he said, sorry you are right i have made a mistake. He has given me another 2xweek supply to run in conjunction with the original script, so that will now be 200mg dox for 2wks. I have asked if he new of any LLMDs but he doesnt so i made a apointment anyway and hopefully by the time i go in someone there might be able to refer me to one. I woke sudenly last night to find my wrist was in agony, i could hardly move it for about 1min then after about 2mins it completly went away, i was able to get back to sleep but it was very strange i have never felt anything quite like that before. Could it possibly be something to do with Lyme? Thank you guys so much, its only because of your comments i even contacted the doctor.
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    • Posted

      thats great news that the doctor agreed and said they had made a mistake ( ive never known any doctor do that!) which area are you in if its the north west i can private message the best ID doctors and who to avoid. hopefully the doxy will work and you will have no lasting symptoms
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  • Posted

    Random/sudden joint pains are definitely symptomatic of Lyme. My right wrist has bothered me pretty constantly while my other joints and pains move around from joint to joint (ankles, knees, shoulders, hips, etc.). May or May not be bilateral.
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  • Posted

    i live in the north east of scotland near Inverness. Aparently the only way to get an apointment with a specific doctor is through referral. I amagine that could provide its own set of problems. I cant even seem to find a LLMD  in the UK let alone Scotland. I agree with you guys that a higher doze and cource of dox would be better than what im currently on. Why not hit the disease hard, I dont mind if i suffer from doxy sides. Im going to ask my sister if she has any. I know she has a medicin coupbard full of medication. That way if the doctor refuses to give me a further doze then i will take matteres into my own hands. End of day its my body and my familys life who will suffer not theres.
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  • Posted

    Refering to my earlier comment, i might just complete this 2wk course then wait to see if anything happens. I have herd that the antibotics can interfere with the testing process giving false readings,as i already have another blood test booked for 10th feb  i think it might be wise just to wait. Im going to request a western blot and a ELISA test be conducted tho. It seems to me that the only way to get proper treatment throught the NHS is if possitive results appear. Wheras as you guys have previously mentioned this disease should be treated on the symptoms alone. Also i have herd that the bacteria may or may not be contracted though means other than ticks,so as a precaution im going to wrap up before getting intimate with my partner. Maybe im being way to causous but i couldnt live with myself if i passed this on to anyone else. 
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  • Posted

    Doctors say they don't know what's wrong with me but I believe I have lymmes desease in me doctors have tested me for it but say test was negative I've been tested for ms. ALS etc now they're referring me to neurologist professor in London. !!!

    But I believe the original lymmes test was false how can I get them to test me again

    I've just read about i genes test. Does anyone know what this is ???

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    • Posted

      hi i had 2 negative lymes test 2014 and 2015 but when my symptoms got unbearable i asked with advice from lymes disease action to be tested again and they advised that any test that was basic has proberbly only been sent to a local lab. the only real testing is done at porton down and yor GP has to print off a form from public health england web site your GP can fill in symptoms on this form and make 100% sure they write " please test for all co infections" + lymes and they have to write "forward to porton down lab" if not it will just go back to your local lab and never get to the right lab. i finaly got a possitive and co infection possitive -good luck

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    • Posted

      Hi Vicky where do you live if you don't mind me asking I've got muscle wasting in my calf muscle which I believe is due to what they think L5 disc degeneration which is annoying my S1 root nerve. But I believe I was bitten by tick in my right foot I can remember picking out a tiny jet black like little needle out my ankle and about 1 to 2 weeks later omg wierd numb right foot then terrible calf muscle cramps which spread into my thigh then into my buttock with extreme muscle twitches and electrical pains the electrical pains stayed for a while in my groin this is when I went to a and e I'm sure I've got lymmes but they tested and said not but why the sudden extreme feeling stemming from the bite area they didn't seem to believe me now I'm waiting to be referred to Nuevo specialist in London but my buttock is doing my head in and I've got muscle twinges everywhere now and muscle atrophy in bum cheek too what was your symptoms.

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    • Posted

      hi terry, i live in the northwest of england. it sounds like you have just had the basic lymes test at your local lab i would ask for the correct testing at porton down and that they do test for co infections. its funny you mention seeing neuro in london although i live in the north they sent me to neurology at queens square ( although they do seem to be the best the testing for neurology problems are better more indepth) before you go through what happened to me no one knowing what was wrong and spening 4 years going to so many specialst and being put through so much testing all without even an idea what a possible diagnosis could be go back to your GP and ask for the proper test on the right forms -good luck
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    • Posted

      Who did you see in London. I'm being referred to Mary Riley

      Did you get muscle twinges and electrical pains and extreme cramps

      I work mostly from an office in Manchester in north west. or rather I used too I haven't been in the office since beginning of December

      How's you now. Where's portion down

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    • Posted

      hi terry, were do you live ? is it in the northwest? or did you just work up here ? I see dr iodice. porton down is a lab down south im not sure of area i was just glad when my bloods arrived there! if you look at the public health england web site it gives all the info. yes i do get muscles twitches and electric shock type zaps that was the 1st symptom i had.
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    • Posted

      Where you live Hun. Would you be up for having a chat about stuff. I can send you my mbl number on private msg
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