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I think I may have Lyme's disease

Posted , 6 users are following.

alicia27299
alicia27299

Hello, I was wondering if anyone has had similar symptoms. I am waiting for results from a blood test taken last week, I have had many weird neurological symptoms and remembered that last year I developed a strange circular rash on my hip. I went to Exmoor last June and the dog got covered in ticks. I didn't see any ticks on me and there was quite a gap before I developed the rash. I also remember getting a flu type thing last summer. I am worried about how common it is to get a negative blood result even if I do have Lyme's disease. Here are the symptoms that began a month ago;

Bad migraine type headache

Visual disturbance

Fatigue

Dizziness

Dental pain (went to dentist and nothing wrong)

Strange tingling sensation/numbness down left side of face and body

Developed into discomfort, mild shooting pains

Nausea

Lack of appetite and weight loss

Hands and neck slightly painful, cracking

Generally feeling unwell

I have also been struggling with my memory and concentration for a long time but thought it was due to medication I was on, now I'm not sure.

I am quite scared at the moment as to what is causing these symptoms, I was sent to hospital the week before last by GP, given a CT scan which came back normal, now awaiting an MRI. It was only last Sunday that I thought about the weird rash I had last year and started researching Lyme's disease. I would really appreciate any advice from people who have been diagnosed. Have other people developed similar symptoms? Sorry for the long rambling post :-)

0 likes, 14 replies

14 Replies

  • david59662
    david59662 alicia27299

    Posted

    Hi Alicia,

    I have CFS 15 months, prior tovery fut 33 y/o triathlete, i have been through alot over this time. Tons of tests and consultations. I have learned alot about lyme disease. Lyme is meant to be diagnosed on symptoms, the manufacturers of the test state this as the tests for lyme are not 100% reliable. The NHS ELISA tests are definetely unreliable, some people's immune system does not produce an anti-body respone to the lyme so the test will be negative. What you should so is request a WESTERN BLOT test, you usually only get one of these after positive and unclear ELISA, the WB is a better test. I managed to get one despite negative ELISA. You should print the first page of this document off and highlight the 'remarkably some immunoblots gave positive results in samples tested negatie by all eight ELISAS.' Show that to your GP as clear evidence lyme testing is not foolproof. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132383/

    I have tested negative for lyme on various tests with an unequivicol result from Germany. You shoudl ask your GP for a trial of doxyxycline to see if you improve. The concensus on the NHS is that a few weeks of doxycycline cures lyme but many people need months of treatment and not everyone responds to doxycycline. Good luck, hope that was useful.

    • alicia27299
      alicia27299 david59662

      Posted

      Hi David, thank you so much for your advice. I'm hoping for blood test results to come back tomorrow so will see what happens. The article is really interesting, I hope to get to the bottom of this, feeling pretty miserable at the moment. I am also usually a very active person, walking and trail running are my favourite things. At the moment just getting off the sofa is a struggle. I have only been felling this awful for just over a month, must be terrible for you being ill for so long. Thank you again :-)
  • NelDubbio
    NelDubbio alicia27299

    Posted

    Yes, you could actually have Lyme. Unfortunately, it's very common for tests to give you false negative since they are VERY unreliable. Western blot is more specific, while ELISA looks for antibodies. The latter gives you a false negative 60-70% of the times (most of all if more than a year has passed since the beginning of the infection).

    I'm very sorry for your symptoms, I hope I could actually do something concrete. You should IMMEDIATELY go to a Lyme literate doctor that will test your blood with specific tests not performed in the UK.

    • alicia27299
      alicia27299 NelDubbio

      Posted

      Thank you so much for your advice, how would I go about finding a Lyme literate doctor? I still haven't had the initial blood tests back yet. It's astonishing that the tests are so often false negatives. With the information you guys have given me on here I feel more prepared to challenge a negative result, the more symptoms I'm having the more convinced I am that it is Lyme disease. Thank you again :-)
    • david59662
      david59662 alicia27299

      Posted

      my reply awaits to be moderated...AGAIN. Anyway you really need to get a western blot test. The testing for lyme is highly controversial, my ID doctor told me this himself. I think having a trial of doxycylcine from your GP would be a step in the right direction. You can buy doxycycline online really cheaply, it is safe, i did it, although it did not improve me it might help you.
    • NelDubbio
      NelDubbio alicia27299

      Posted

      You should ask in our forum if someone knows a LLD in your area. Regarding the blood tests, i can send you a message where you could send them.
  • aromasammy
    aromasammy alicia27299

    Posted

    Soory to hear you have been unwell. Your symptoms do point toward it (mine are very similar, and I had bite and rash..but didn't get treatment at the time). You mention you were on medication, but don't say what or what for - this could be a side effect?

    Unfortunately the blood tests are unreliable, so don't take the result as confirmation.

    I have the disease, was bitten twice and had 2 rashes and now a whole plethora of symptoms and my doctor is refusing to treat it, as he refuses to believe that I still have it as my tests came back negative. I live in Madeira and it is thought to be rare here, which doesn't help in my case. If you are really concerned that you do have Lymes Disease and your tests come back as negative, then try contacting Lyme Disease Action UK.....they have been absolutely brilliant with me and are helping me with trying to get across to my doctor that I should be treated for it.

    Its a long and slow road..but you will hopefully get the answers in the end. Good luck!

    • alicia27299
      alicia27299 aromasammy

      Posted

      Thank you for your advice. I'm hoping to get to the bottom of this. The medication I was on was amyltriptaline and other nerve pain drugs for sciatica ( I've had this for years) but stopped taking them last October. I will keep Lyme disease action UK in mind if it comes back negative. It must be so frustrating for you that your doctor has been so unhelpful, I hope you get treated soon. It seems so weird that Drs don't listen.
    • aromasammy
      aromasammy alicia27299

      Posted

      Hi Alicia

      The frustrating part is that my doctor keeps insisting that I should go and see a shrink! I find this incredibly offensive, given that he agrees I had stage one Lymes and knows I didn't get treated for it. Add to that he would prefer to palm me off onto a neurologist and rheumatologist which will just cost the health care system more money. They don't listen and its very frustrating. The thing is not to give up hope and dont be afraid to get a second opinion...there is more Lyme Disease sufferers out there than they would like to admit.

      Good luck, I hope it works out for you smile

    • alicia27299
      alicia27299 aromasammy

      Posted

      Thank you :-) I really hope that you get better. Its just so bizzare that Drs seem so against diagnosing Lyme disease when everything points to it. Thank you again, it's nice to know I'm not alone :-)
  • david59662
    david59662 alicia27299

    Posted

    i hope my reply get's through, the moderation on this site is soo annoying.
  • david59662
    david59662 alicia27299

    Posted

    Good luck with the test. You have to prioritise getting the western blot. If your GP says no you can do it privately. It's about £150. BTW in the beginning ofmy illness i could not even hoover the carpet for months, i was in tears as i did not know what was arong with me, still don't, i struggled to climb the stairs at home. I used to be so fit. I have had some improvements but am nowhere near my pre cfs levels. You might want to look into getting some LDN on private prescription. It only costs £18 month but helps so many people. I can provide you with all the details if it interests you.

    Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • paul21590
    paul21590 alicia27299

    Posted

    hi alicia ,

    two years ago i found a nymph tick under my arm late one night 4 days later i had a rash the size of a saucer following day i was on doxycycline i did 7 weeks of that and luckily caught it early , i was lucky because i found the tick and got the rash so didnt waste any time .

    now my dog has it and its really hammered her .

    good luck paul

     

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