Jus finised tratment, advice on recovery please

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I agree with a lot of people on here that knowledge/unerstanding at GP level is inadequate.However I feel i have been lucky when i read some of the post on here.

I was bitten in my left bisep   Oct 2014, I devloped the classic rash a week later and myarm went stiff,I could not move my hand/wrist at al. My GP said'   he had no idea what it was' and gave me cream for the rash. A week later the numbness was spreading so I went back. Ths time it was felt it was problem wth nerves, I was referred to have nerves checked (appointment was in two month from seein docto)

ByJan I was gettng worse wih loss of sensation, fever, headache etc.

I went to A/E, tried dr first no appointment for week, they did several test but did not know what was wrong. Then one Dr mentoned Lymes, he knew of it as had just been studying for a exam, I was put on oral antibotics and tested for Lyme

My legs then went and I could hardly walk. I was reffered to the RVI Newcastle, who were fantastic,there knowlede of Lyme was amazing. I was given IV antibotics and my arm/hand rcovered my legs eased. I can not praise them enougth.

Sorry to take so long to get to the point but, since I ended treatment my  calfs are realy tight and It makes walking hard. I stretch ofen but always ends up stiff agan. I stil have reduced feeling in them. I know I am lucky compaired to many Lyme suffers and need to be paitend, Im told reovey could b up to six month. I would realy apprecaite any feedack on your recovey or if you have had simaler problem with legs.

Thank you in adance,   

1 like, 24 replies

Report

24 Replies

Next
  • Posted

    Hi Steve, do you know what abx they gave you ? I have CFS diagnosis with many lyme symptoms, i have been tested negative for LD but testing is controversial, i've been tested for everything else over 15 months. I was in highlands 6 weeks prior to feeling unwell. My joints are now problematic, extreme fatigue etc etc i was formerly a triathlete. Good luck, what a story !
    Report
    • Posted

      Dave

      I was given doxyciline 100mg twice a day after two week with no real change I was put on Iv Ceftriaxone 2grm twice a day, at this point I had been admitted to the RVI. For the last week my Iv was changed to 4grm once Aday which I administed at home following discharge.

      I have to say the RVI infectious disease staff and neurologist were fabulous and informed on Lyme. I was examined by quite a few student dr who, having been told my symptoms identified it as Lyme. So hopefully knowledge/awareness is improving

      Report
  • Posted

    Steve how long were you unwell before you got treatment ? Can you aso tell me what it was like for you living with lyme so i can compare to my own situation. Did you feel like you were literally dying, i've called an ambulance twice cos i thought my heart was about to give up. did you feel your heart was weak, did you get any problems with your eyes, did your eye whites become red, like conjunctivitis.

    Was it the hospital that told you recovery would be upto 6 months ? Thanks again

    Report
    • Posted

      Hi David

      Yes hospital told me I should expect up to six month before feel fully normal again. I never had problems with heart though did feel out of breath on couple of occasions when walking up hill, was quite fit before nite so this was unusual.

      I did gave redness in eye but only lasted couple of days. I felt tired, headaches and flu like(hot then chilled) , I also was irritable and snappy (not good with a family) noise irrataded me. I had a lumber puncture(3 attempts) which left me with blinding headache to the point I was physically sick. For a entire weekend at one point I litterately curled up,

      My main issue at first was nerves I had no control of left hand/arm one Dr thought I had suffered a stroke, thank god I had not. I have lost lot of muscle definition and strength. The main thing now after five week antibotic( which ended in Feb) is my calfs they are reAly stiff up to my knees with loss of feeling in them. My ankles sometimes lock( mainly at night) I also suffer from insomnia and wake up at 0300hrs most days.

      I hope this answers your queries

      Report
    • Posted

      Thanks so much Steve, especially info on doxycycline as my GP put me on this 8 months into my illness 100mg twice/day and i did not feel any better so he figured no lyme but this obviously cannot be true. I'm delighted for you you at least know what is casuing your problems, i hope you make a speedy recovery. I need to push my GP with regards to lyme disease.
      Report
    • Posted

      I've been unwell for three months.just found out a week ago I have Lyme disease.the whites of my eyes have darkened and I have felt like I was about to have a heart attack. Even get feelings of a possible stroke.hope this helps
      Report
  • Posted

    how much improved are you percentage wise now after treatment compared to before ?
    Report
    • Posted

      Dave

      Defo push your gp when I went on to Iv got movement back in hand/arm prob after four days. Even neuro Consulant who put me on it said he knows studies say doxy is first choice he had been thinking of changing to Iv early and if had another case would go with Iv abx. My calfs are prob little bit my problematic than before but hoping physio/time will sort that. Other symptoms, whilst still get them would say 90% improved. I have arthritist type pain in hand but have 90% mobility back and grip strength improving. Sometimes my arms cramp/stiff through night but frees when stretch

      Report
    • Posted

      What would say was yes Iv improved, however I did get side effects from them. I had stomach upsets etc at one point Dr thought may have cdif, so was taken off for two days. Once I had finished course it all settled down again
      Report
    • Posted

      Got to push GP. Especially since now my knee joints are causing me problems. It's just been  progressing this illnes for 15 months as much asi fight it. I tick just about every box with lyme. Even ID doc admitted not everyone get's rash from bite. Did you get a positive test result for lyme or were you just treated on symptoms ? cheers again
      Report
    • Posted

      Cheers Steve, know i am bashing your brain a bit here. I just know i have got lyme from either being in Bulgaria or highlands summer 2013. I've never been sick a day in my life till now.
      Report
    • Posted

      Dave

      No problem bash away pleased to help in anyway can. I did get a positive test back, sorry don't know which test it was. I had two test one from durham university hospital, which was where young Dr first mentioned Lyme. Second test by RVI this ws positive first test was inconclusive. I have heard of co infection just have stuff I have read but not reAly knowledgable on them. I was given loads and I mean loads of tests which never came up with any other concerns. I understand not everyone gets rash but that should be enough to start treatment, I wish my go had. I don't know exacetely where I was bitten but must have been in North East England. Dr was surprised as not know area for infection

      Report
    • Posted

      Amazing Steve, from what i read about LD you are one of the lucky ones. I'm actually doing a course of amoxicillin and am feeling improved, it's only been 2 days but doing 2000mg day. Amox is used to treat lyme. I'm due back at my GP next Tuesday. There are so many people go undiagnosed with LD. You should join Lyme disease UK Facebook, unreal the info and help and support i am getting in there. I'm sure your experience would be more than welcome. I been hideously unwell for 15 months, many times i thought i was about to die, used to be triathlete 10 years, so fit and healthy and this illness has brought me to my knees. I just know it is lyme i have. If i cannot get treatment from GP etc i will have to self treat with abx and herbals. I used Samento and Banderol which some lyme docs in the US use and i really noticed a big difference but as lyme tests negative i thought well can't be that, but many months later my symptoms progress and my fatigue keeps me housebound, now my joints are ceaasing up, i'm oly 35 not 95. Every symptoms i have is LD. Eyes, heart, adrenal fatigue (from private test), poor circulation in hands, extreme fatigue, problems with sleep now knees are effected.
      Report
    • Posted

      Thanks Stev, just know i have lyme, my other post will get deleted cos i mentioned a product i had been using for lyme. Bloody typed a long one, wish we could at least edit the post. Anyway mate been self treating with amoxicillin 2000mg day for the past 2 days and noticably improved. Really worried about this progression to my joints. I see my GP next tuesday ! Best of luck mate. You should join Lyme disease UK facebook group, tons of info in there. I'm sure your experience would be more than welcome. All the best !!
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up