Could anyone help answer my questions

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Is there anyone who was diagnosed with Lymes in the UK in later stages that wouldnt mind PM ing with me, someone that knows a fair bit on the subject? I just want to ask some questions as im trying to figure out if i could have it or not, ive had the standard NHS test a couple of years ago but it was negative. If i do have it then the test would have been a minimum of 5yrs after infection, probably more as I dont ever remember being bitten however i have probably had a great amount of exposure to it in my early twenties, back when id never heard of Lymes or tics.

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  • Posted

    Hi Charlotte, as Margaret suggests below, the facebook group are very helpful and will give you tons of support and information.

    I am in later stage LD as when I got bitten and had 2 EM rashes, never saw the doctor as I had no idea at the time. As symptoms over time got gradually worse, I eventually saw the doc...and the battle began for a diagnosis...now I am on around 6 months of antibiotics to get rid of it.....

    The blood tests are unreliable, so treatment now need to be based on symptoms if you have some.

    Get better soon

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  • Posted

    Thank you, I'm not actually on Facebook. I was thinking about getting the test from Germany that is listed on Lyme action website but I did see a comment that someone paid hundreds for the test and nhs would not accept it.

    How is the 6 months of antibiotics working? I've read mixed information on how well antibiotics in the later stages work.

    I'm not sure if I have lymes as I don't remember a bite or a rash but I've been tested for most other things such as arthritis, lupus etc and it's always negative and my symptoms are the same as lymes.

    The main thing that keeps resonating with me aside from aches and pains and loads of other symptoms is muscle rigidity, tingling, numbness, burning, I often feel like my muscles sieze for long periods and will then stop, it's like an attack.

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  • Posted

    Hi Charlotte, i paid £500 to have mine tested in Germany, the bloods were sent off yesterday and takes about 1 week for results. It's a fairly simple process but costly. I would put all my symptoms down to menopause and me being a hill runner in Scotland but why i had a mysterious heart situation back in April which had a knock on effect to my chest and head worries me as results are all negative from bloods amd scans. I just have to wait and see and I'm fairly new to what help is out there if I'm positive.
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    • Posted

      Hi Lorna, did ur GP take the blood for you?

      I've thought so many things, hormones, thyroid, lupus, arthritis, ms, heart disease and many more but I seem clear for most things. I used to walk the dogs in shorts, sandals when I was younger or walk home though wooded area after a night out in sandals and a dress plus I've picked up half dying hedgehogs from the road, I've fed a dying baby deer before, wrestled sheep all before I knew about lymes or tics, only discovered that info when started not feeling well and went searching.

      What have been ur symptoms?

      Good luck with the results, I hope u get the answers your looking for.

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    • Posted

      Hi Charlotte, mine all started in Apr frim 2 bites i had last year. Suspected heart attack with severe crushing pains un cbest throwto my back, given all clear but my chest still bothers me and i end up with a gruff voice eventually. Then headaches with a constant high pitched noise which i am waiting on the results from. Sore joints, sweating, anxiety, abnormal heart rythym, tired, dizzy all followed and still comes and goes. I asked my friend who happens to be a nurse in my practice to take the blood. Not been back to Dr yet. All very confusing at my age. Many thanks for your good wishes, this is all awful for anyone involved and affected
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  • Posted

    Oh joy, results back from Germany today...Black Fri and i have Lymes Disease so it was money well spent !!!

    Not all 8 tests were positive from what i can decipher (lab speak isn't my speciality) but i homed in on a.positive outcome for chronic Lymes. Got an appointment with the Dr who was understanding and is referring me to infectious diseases unit next week....now that's good. What does worry me is that these nasty little bugs are quite resistant to antibiotics so i read and i am still waiting to hear back from Germany on the severity of my infection. Is my mind at rest? ??? Not at all...my headache is much worse and my eyes are oddly bloodshot but not from crying. The Dr took some notes on my symptoms and was curious as to why Germany didn't actually test for Lymes. I don't know either so i will also try and find that out. They were testing co-infections from the checklist i ticked.....watch this space!!!!

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    • Posted

      Hi Lorna. Will you let me know how you get on with infectious diseases on this one. I have had some treatment but it appears to be limited to 21 days. I became symptom free for 5 weeks and then it slowly all crept back..except for the eyes touch wood..
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    • Posted

      Hi Sky, i defo will. My cardiologist will have my other bloods back on 3rd Dec so i have to wait until then. You seem to have gotten some results from your treatment and at least if it shows an improvement although temporary then at least it reacted to it giving you some evidence and peace of mind that Drs will recognise something is happening.
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    • Posted

      Also i should call the Dr back tomorrow as she said she would call me this week with the advice she should've got back from ID...and she hasn't. ...not a good sign or perhaps maybe because my consultant is on it ???
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    • Posted

      I got treatment with 21 days of doxy. It made me feel vile.However a week after taking it my arm pain left me..I felt on top of the world..then it crept back. I agree with you it comes as attacks..some days are far worse than others. I should tell you I was treated with a negative result. I spent time prior to seeing infectious diseases writing down every symptom I had since the tick bite. This seemed to help with ID. But the consultants seem very polerised about Lyme...one said to me..'oh, its easy to treat lyme'.I just never rose to her bait.  Right now am under neuro and had scans because of the slowed/restricted movements and pain and am awaiting nerve conduction tests..they are another route in..The neuro consultant says Lyme is a possibility..so at least someone has an open mind..
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