Nerve repair 'feeling'

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Quick question, has anyone had damaged nerves from lyme(or any illness). I ask because I was told my nerves had been effected and now my treatment has ended they will repair them selfs. I just wonder if anyone can describe sensation as concerned what I'm feeling could be Lyme coming back. Finished treatment month ago.

Thank you in advance

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6 Replies

  • Posted

    Hi Steve, I have read somewhere? (Can't remember where now) that this can happen. How long were you on antibiotics?  I am currently on week 6, for 3 weeks I felt nearly normal but last couple of weeks have experienced some tingling, muscle

    twitches and sweats again. I am hoping that this is because antibiotics working and spirochetes dying off.  Who knows, this is such a weird scary illness.

    hope you improve!

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    • Posted

      Fat fingers(like it lol)

      Thank you for reply, I was antibiotics for just over five week. Oral for three then IV.

      Your so right it's scary and so little understanding, or appears to be, with GP.

      I had simalar to that toward end of my treatment, but chilly rather than sweats.

      Main prob at min is reAly stiff calf/feet and new pains I mentioned in post.

      Thank you for response hope your recovery goes well

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  • Posted

    Hello Steve and Fat Fingers

    I am new to this website as I have been going through the ordeal of looking into my Lymes disease as I had stage one (2 bites and 2 bullseye rashes that lasted for weeks, but didn't go to a doctor at the time as I had no idea about ticks and Lyme). It's been a tough week this last week as now the doctor is on the ball realising that my current sypmtoms may be connected to Lymes...I got bitten over a year ago. What attracted me to write on your thread was that you mentioned your nerve damage and at the moment I am having different problems all over my body. It is random...some days I feel as fit as a fiddle and other days I cant function - aches, pains, headaches, dead toes, tingling in arms and my knees pack up and the feeling of just being unwell. brain fog, memory and so much more, that its hard to describe as they are all small and insignificant, and are different each time!

    I saw the doc on Monday and he didn't take me seriously and suggested I saw a shrink! Then when I wrote and explained and copied some research I had done, he was straight on the phone apologising, whisked back into the surgery for tests, blood tests yesterday and ECG. He phoned the hospital on Wednesday, I got a phone call yesterday and I have an appointment for this Monday. Not sure whether to be impressed or worried as this is incredibly quick. I forgot to mention, I live in Madeira (a Portuguese island) and the doc admitted that they are not very well informed on the disease as they feel it is quite rare to get it here, although there have been a few reported cases.

    I am not on any treatment yet, have no idea what to expect on Monday and what is to happen next. Today I have had a bad day. I woke up with my thumb, index finger and then middle finger twitching uncontrollably....it wouldn't stop all day and was driving me nuts....it has now but my hand and arm just ached up to the elbow. Earlier I had niggly stabbing pains in my head...gone now and my right kidney aches. Tomorrow I will probably wake up and be fine again. But this is how it goes and I think my nerves are being affected - hence why I am writing on your post here. I would really like your advice and to know what the process is once you get to the hospital appointment. This is quite scary as on one hand you feel like an arse and think you do need a shrink - on a good day, then you feel incredibly ill another but its always on a day when you are not seeing a bloody doctor!

    Look forward to your thoughts.

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    • Posted

      Hello aromasammy

      Hope you feel ok today, glad your Dr has open mind now and accepted your research. Unfortunately many Dr seem ignorant of Lyme. You are not a arse at all its a complicated disease with many strange symptoms.

      With regard to what to expect I can only comment on my experience here in UK. Standard treatment for Lyme is course of Antibotics, NHS guidance is a month, but many places/people think need more. I finished my treatment a month ago and was told Lyme would have gone, I'm not sure. When I was first bit I had simalar sensation to you in left arm which spread to right arm and legs. I lost use of left arm (returned after treatment). However I have started having pains in it again, Dr say this is nerves and not Lyme returning. My main prob is calfs which are both reAly tight.

      Each person is different and has different symptoms with differing degrees. I would also ask to be tested for any co infections as ticks can carry more than Lyme, I did not know this at time not sure if I was tested for anything else.

      Could I suggest you join UK Lyme discussion group on Facebook (may be a Portuguese one) there is some reAly helpful and informed people on there.

      Hope this answers question if not just message. I would hope/imagine they will start you on a course of antibiotics. Good luck with treatment

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    • Posted

      Thank you for your reply Steve. With your nerve problems was it random and then seem to move around different parts of your body? 

      I got my bites on my right leg and seem to be having problems with my left. The twitching of the hand was a new one that appeared yesterday, if a freind hadn't been over and watched my fingers do their dancing by themselves.....today I would be feeling silly as if I had imagined it, as they are not twitching today!

      I am a little conscerned about tomorrow as I will be using a translator as the disease department don't speak any English. As the doc already took 5 vials of blood on Thursday I doubt they will have a result back yet. He said they will do their own tests, but didn't say what. So when you went to the hospital did they start treatment based on your symptoms, the bite and the rash from earlier?

      Thanks for the headsup about the FB page I am going to look for it and join.

      I wondered what the coinfections meant, glad you mentioned it as now I can ask about that too.

      I did read somewhere (as I have done a lot of research on the net) that some people can be treated with antibiotics and it only clears up the symptoms for a while, then they can return later as the antibiotics in some people don't eradicate the bacteria. That the only way to releive symptoms is to keep medicating for the rest of their life. I really hope for you that this isn't going to be the case.

      Reading on here how so many people are being ignored about the possibilities of having the disease and how doctors are reluctant to look into it is astounding. I am lucky that after my dreadful experience with mine and after having to write to him and ask him to consider the possibility that he very quickly sat up and got me back and took it seriously...had I not complained, I would be sitting here stressing about what and where to go to next.

      My other concern is that tomorrow I may get brushed off by the hospital as it does seem that maybe they are not so clued up about it here, as I was told it was quite rare to get it here, and only a few repoerted cases.....as we are a holiday destination I can only imagine the reason is that the many visitors to the island, don't realise until they get home and I am sure that countries do not communicate with each other about the disease.

      Madeira is a lush island with lots of moutain walks and visitors are warned about checking for ticks when they have been walking them, as they live in the undergrowth, on the back of leaves and foliage.

      A couple of years ago I had some French tourists staying in my holiday apartment, they had been walking in the mountains that day and were banging on my door is panic as the man was clutching his stomach and was in a panic. He had a tick embedded into his tummy, I couldn't pull it out, as it was buried in really deep and looked quite well fed. I stuck a cotton wool bud dipped in tea tree and lavender on it for about 5 minutes and then removed it with tweazers as it started to unlatch.....they were so thankful and left much happier. BUT not knowing at the time about the possibility of Lymes, never adcised them to see a doc when they got home, if a rash were to develop after being bitten.

      With so much information on the internet, why are doctors or health care proffessionals so ignorant of the disease? We can't all sit in doors and live in fear of what we might catch, but with the freedom of movement across the globe, many things are now enetering countries that wouldn't, and now we have to open up and look at a wider range of problems than we ever did before.

      Sorry I have rambled here and got off point. Thanks for your imput and I hope that you can get yours sorted....Maybe insisting that you go back on the antibiotics to see if your symptoms clear up again...surely that would indicate that the disease hasn't yet gone.

      Good luck smile

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    • Posted

      Hello aromasammy

      My nerve feelings weren't to random, I was bit in left bicep and was left arm that went first. I then felt numbness travel across shoulders and into right arm, did not get as bad then on right. My legs started a couple of week after started treatment.

      I totally agree on how surprisingly I'll informed/aware some Dr seem to be esp GP. I must admit the ones at hosp were good/aware.

      I went to GP with rash about month after bite, he just gave me cream(aprentely if given antibiotics then would have been fine hay hum). My symptoms got worse, went back anther Dr thought trapped nerve. Got worse ended up at A +E several scans etc it was Dr there who by chance heard about rash etc and mentioned Lyme, he started me on antibiotics. The rash with history of bite is enough to say Lyme.

      It took my test 2 week to come back, legs got worse and was admitted to hosp. I've read,like you, loads about chronic Lyme and how need longer treatment but I know ward that treat me in end think one month of treatment will have killed Lyme and just be body needing to fix self. I don't know because my legs are not improving mind was told three to six month it's been one. My fear is what if Lyme still there three to six month gives it longtime.

      You are so right about how things can travel these days. I use to walk Bike etc now I know I will be paranoid when out again. I'm always on at kids if they lay in garden or if they aregoing walk to make sure they covered up and stay out of bushes etc and that's wrong.

      We go to Portugal on holiday (hopefully sorted by then) I will be the one walking round in trousers and shirt; not shorts and flip flops.

      I reAly feel for you needing translated that is another worry/stress you don't need. Please say how you get on and defo join that FB page lot of knowledge. Sorry for long reply, look after yourself

      Steve

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