1. Community
  2. Infections
  3. Lyme Disease

Does it sound like lyme to you?

Posted , 7 users are following.

Coturnix
Coturnix

I'm pretty sure I have lyme disease, im 26 and before I got ill roughly 3 years ago I was very active and fit and I used to walk miles with my dogs anyway. Since the begining of last year I have basically become disabled. It started a few years back when I lost a huge amount of weight without doing anything out of the ordinary, then I started getting nausea, light sensitivity, bladder problems, hot flushes, diarrhea. I didn't think much of it at the time because the symtoms came and went. I hadn't seen a gp in 10yrs because I didnt feel I needed to, why go if you aren't ill. Anyway in june last year I started gasping for air and getting palpatations, feeling faint, fatique etc I felt like I was in a dream and nothing was real so I went to the Dr immediately. When I got there I was in a state, crying etc. Becsuse I felt do unwell and could barely walk. I thought it could be my thyroid so I mentioned that and that I felt as if I was in a dream, so the Dr did a blood test and told me if its not that then it must be psychological. I was shocked she thought that when I felt so ill. I went back for an ecg they said it was weird and I'd need another and then I got my bloods bk all normal. I felt a little better in the weeks following and then I ended up in a&e I had severe pains in my chest and was gasping for air and having shooting pains down my left arm. They said I have tachycardia and that my heart rate is going up and down and they don't know why. I was let out that night and told it was probably a bout of angina and reffered to the rapid chest pain clinic. It took 6 weeks to get an appointment, they did an ecg and told me im fine and they sent me for a echocardiogram which im still waiting for 8 weeks on. I think I figured out I have lyme in the past couple of weeks especially with the memory loss and muscle spasms aswell now. So I got an appointment with my gp to ask for lyme test I just hope this doctor doesn't think im crazy.

0 likes, 13 replies

13 Replies

  • caroline91964
    caroline91964 Coturnix

    Posted

    Hi there,

    Your GP shouldn't think you're crazy. Make sure you are confident and assertive when you speak with your GP. Do not apologise for feeling ill, they are there to help you. I would suggest you write down the sequence of events leading you to feel ill and say that you are concerned that you have Lyme Disease and want a blood test to be sent to Porton Down, which is the where Lyme Disease blood tests are done. They cannot refuse you. Do not be put off. If they suggest you don't need that, firmly insist that you have the test done.

    If you need information about how to work with your GP or more info about Lyme Disease, go to the Lyme Disease Action website, you can look it up on the Net. I had Lyme Disease a couple of years ago and they really helped me.

    I sympathise with how you're feeling. It's hard to be confident and focussed when your body hurts and your mind is vague. I found it easier to go into appointments with ready prepared notes. Also, I booked a double appointment if I felt I needed more than the 10 minutes they put by for each patient.

    Good luck, I wish you well on your diagnosis and hope you feel better soon.

  • kelly33933
    kelly33933 Coturnix

    Posted

    Awww bless u , this sounds like me 5 years ago , if you are in doubt persevere with your gp ask to see a different doc , inform them that you think there's a chance that you have Lyme disease , they will test you but the test is so unreliable in later stages of the illness and the doctors know this , the only way really to be sure is to maybe try and convince the doctor you would like to try a course of doxycycline to see if it makes a difference and trust me you will know if it working because you will herx this is a worsening of symptoms because it's a reaction to bacteria dying off in the body , I'm speaking from personal experience and have had this condition for 5 years I am chronic Lyme I did have a bite and the bullseye rash but not everyone does I had

    Muscle twitching all over body

    Light sensitivity

    Ear and jaw pain

    tingling

    sensations

    Migrating pain

    Lightheadedness

    Tiredness

    Heart palpitations

    Neck and shoulder pain

    Bone pain

    I so so hope you get a doctor to listen don't ever feel like it's all in your mind , you know your body !!!!!

    • ally2016
      ally2016 kelly33933

      Posted

      Kelly, these are the EXACT same symptoms I have. Exactly. Just wondering how long it took you to figure out you had Lyme? These started for me 2 years ago. I think I was infected in 2010, but I can't pinpoint it. I am going to the doctor tomorrow. They keep telling me it's anxiety.

  • Lolly49
    Lolly49 Coturnix

    Posted

    Ask gp to check for co infections too, especially anaplasma phago, babasia, and bartonella as the borrelia doesn't always show up. Borrelia (Lyme) is a bacterial parasite and can easily hide in your system.

    If your tests come back positive, ask the gp to contact Lyme Disease Action (.org) as they have the most up to date treatment advice. The 2 weeks anti biotics usually prescibed by NHS wont be enough as the bacteria has a life cycle of 4 weeks and will have multiplied significantly in 3 years. I've been on meds for 9 months so far, but it is working!

     

  • Coturnix
    Coturnix

    Posted

    Hi everyone thanks so much for the advice and support. I really hope the Dr listens this time, I've gathered alot of information here today that should help. I feel like there's a bit of hope that the doctor might listen and not just fob me off, it's really depressing being so ill and not believed. I can tell my condition is deteriorating because my legs are all wobbly like jelly when I stand up and I can't remember what I'm doing etc and im also having trouble speaking properly because I forget what im saying in the middle of sentances it's very worrying plus this morning I really thought I was dying I had severe chest pains, my heart was pounding and I felt like I was going to faint and I also had brain fog so I wasn't sure if I was awake it was scary. I'm glad to see people getting better from this. Thanks again for all the info and kind words.
  • stephen17453
    stephen17453 Coturnix

    Posted

    I'm in a very simular situation. I went to my doc's and have insisted on a lymes test so on wednesday the 3rd im off to heartlands hospital where i hope to have a blood test done. I took my wife to the doc's for a bit of support. Glad i did as the doc was not supportive and quite sceptical to the point i actually asked "Do you believe me?". I told him to check my medical records and see my doctors appointments, if they did this they would see that up to my mid twenties i virtually never went to the docs, but at some point i started going as i was constantley ill. I worked in forestry and countryside managment for 13 years and at some point when dragging brash from under a tree i was bit on the neck by what i believed was a spider (it was a tick) i told my mates at work who just took the micky out of me. Until i developed a bullseye bight mark on the back off my neck thankfully they took the mick out of that aswell as i would still be none the wiser as it was on the back of my neck. I used a mirror to look at it. I just never linked the symptoms i was displaying with the bite. So have suffered for years, developed atrial fibrillation, constant lack of energy loss of feeling in my feet and now in my left hand aswell which was the final straw for me. Which brings me to my point Coturnix, I still doubt my self because of the docs sceptisism, i dont want to waste there time, i feel guilty for questioning them....and i shouldn't! and nor should you. You know yourself  go with your gut feeling, all the best 
    • caroline91964
      caroline91964 stephen17453

      Posted

      Hi Stephen,

      Your GP's reaction doesn't surprise me. Sadly, there's a lack of knowledge within the GP system about Lyme Disease and they are guided by out of date information too. When I was bitten by a tick and became ill, it took my GP just 3 months of appointments to quickly suggest I needed psychiatric treatment. As I went downhill and became more and more ill, she seemed to become less and less interested. It was only when by chance I went to an appointment with a duty doctor that he suggested Lyme Disease. A blood test was done and sent to Porton Down where they do the ELISA test on behalf of the NHS (They are Public Health England). It was confirmed that I had Lyme Disease. My GP did apologise, which I appreciated, and I was treated with 28 days of Doxycycline.

      Make sure you get the test. Be aware that if  you have been on antibiotics or perhaps other medication it could affect the test results, which are already unreliable.

      Keep positive and focussed. It was a good idea to bring your wife to the consultations, I wish I had taken my partner. Keep notes too. I kept a daily diary and rated my pain on a scale of 1-10, 10 being the worst.

      Also recommend that you contact Lyme Disease Action, you can google them.

      Don't take it for granted that the medical person you're seeing has read your history. Go through your symptoms and the fact you worked in forestry and were bitten by a tick with each doctor you see.

      All the very best in your recovery.

      Caroline

       

    • stephen17453
      stephen17453 caroline91964

      Posted

      Hi Caroline

      Thank god for your duty doctor and thank you for your support i have my appointment at birmingham heartlands hospital tomorrow. I cant help but feel nervous, could i really have had this for as long as ten years? The truth is im scared of the test coming back negative. Well i will post my results positive or negative and thanks again.

      Kind regards

      Steve

    • stephen17453
      stephen17453 caroline91964

      Posted

      Hi Caroline

      My test came back negative, i just dont know were to go from here, they dont seem to belive it was a tick that bit me. Im just gutted as i dont know were to turn now, the consultant i saw said that because of what i'd told her ie my job in forestry that she would be prepared to give me a 3 week course of oral antibiotics even if the results came back negative. How ever i saw a different doctor on my return to get the results and he refused the antibiotics, saying that the health service had released a statement saying that lyme testing was now considered reliable and that if he gave me antibiotics it would be like saying he didn't belive the testing was reliable, i was devestated but didn't want to beg for them. Is it possible that i've had a negative result but actually have it. I know i was bitten by a tick and developed a bulls eye rash, they belive it was a random insect. i just dont know what to do, all the time my symptoms continue.

      kind regards

      steve portlock

       

    • caroline91964
      caroline91964 stephen17453

      Posted

      Hi Steve,

      Your history would indicate probable Lyme Disease. You job in forestry, bitten by a tick, seeing a bulls eye rash.

      I strongly suggest you contact Lyme Disease Action and email them. They will be able to advise you.

      Be sure to let them know what the doctor said to you, "that the health service had released a statement saying that lyme testing was now considered reliable and that if he gave me antibiotics it would be like saying he didn't belive the testing was reliable." That sounds very odd as it's well know that the testing is not accurate.

      Keep us informed and good luck. Don't give up, this is your health. 

      My experience shows how it's important to get an informed GP. My mother in law caught Lyme Disease whilst on holiday with me. My GP was unhelpful and made me feel like I needed a psychiatrist until I came back LD positive. My mother in law was treated in Manchester, where she lives and was given Doxycycline when her GP made a clinical diagnosis as she had a bulls eye rash.

      Please do contact Lyme Disease Action, they helped and advised me loads.

      Caroline

    • stephen17453
      stephen17453 caroline91964

      Posted

      Thank you for Caroline im onto it now, your advise is greatly appreciated, my doctor is refering me back to the fisrt consultant i saw and im contacting LDA after this email.

      Many thanks

      steve

    • stephen17453
      stephen17453 caroline91964

      Posted

      Hi Caroline

       

      Im sorry to bother you i've opened a new disscusion as im at my witts end with the Doctors, these questions are from my new post your very noligable and i thought you might know the answers, i took your advice and contacted LDA but the docs just dissmissed it.

      1, I've had 4 seperate courses of antibiotics over the ten years since tick bite for unrelated things, tooth out, shoulder operation and 2 chest infections. Can having the antibiotics years or months before effect the Lyme test?

      2, I pulled the tick off my neck with in 30 seconds of being bit, it came of in pieces, the infectous disease doc said it needs to be on for 24 hours? i thought the fact i squashed it in to my neck may over ride this.

      3, I started taking the antibiotics 36hrs ago, im now experiencing extreme flu like symptoms,  joints aching, sweating, chest infection,confusion, feeling sick. Is this the HERX reactions? i.e if there was nothing the matter with me the antibiots should have little effect?

      Basically the doc at the Infectouis disease clinic, does not believe i was bitten by a tick as the results came back negative and yet i know i was. When i asked what she belived it was if not Lyme she said i had Psycological problems caused by alchohol! (My wife is absolutely dissgusted and is putting a letter together). I was devestated I'd gone prepared with print outs from the Lyme disaese association and she dissmissed it all saying they had a vested intrest and were just after my money. I explained they were none profit making, she just shook her head.

      Any help or advise would be greatly appreciated

      Many thanks and kind regards

      Steve Portlock

  • vicky89033
    vicky89033 Coturnix

    Posted

    if your doctor does agree to test for lymes make sure they do a full test c6 and immuno blot also include an extended lymes panel it is important that they download the correct blood form from public health england and write "please send to porton down" they can also fill in your symptoms on this form which helps ( take a clear list of all your symptoms with you when you see your GP) my GP agreed to test me for lymes after 3 years of horrilble symptoms but just filled out a standard blood slip and it went no further than my local lab who had no idea what to do with it. after having to complain to P.A.L.S and my local M.P my test is finaly now on its way to porton down. i wonder how many doctors have done this and labs messed up. good luck getting your GP to take this seriously your not crazy just understandably worried and need answers. lyme action uk are realy worth getting intouch with
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.