Jus finised tratment, advice on recovery please

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

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

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.

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

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

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

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

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.

Have you heard about lyme co-infections ?

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

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.

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 !!