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,
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 !
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
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
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
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.
Steve so you felt better on the I.V abxs ? How long before you noticed improvements ?
how much improved are you percentage wise now after treatment compared to before ?
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 !!
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
Hi Steve,
I had Lyme Disease last summer and after a 28 day course of Doxycycline, felt a lot better. I was warned that it would be a long road to complete recovery and would say that I now feel 90% well. I still have bouts of fatigue, particularly in the afternoon and my elbow and knee joints still twinge, though less and less as the weeks go by. I have read that it's our own immune system that causes this damage, but the body repairs itself slowly.
Just keep on keeping on. Good luck with your recovery.
Caroline
Thank you for your post, I'm reAly pleased to hear you improving so much, we hear so many stories of people suffering I think it can drag us down. Can I ask how long it was between you getting bit and starting treatment? I know, having spoken with Drs and seeing the results of the extensive nerve damage I have it will be long ride. Just keeping positive and posts like yours certainly help, so again thank you. Hopefully for last 10% not far away.
Hi Steve,
I was bitten around the end of June 2014, but didn't notice a tick bite. I noticed the bulls eye rash behind my left knee on 8th July and started to experience a slight tenderness around the knee area. It took several appointments with a duty doctor, the practice nurse and my own registered doctor until I was diagnosed with Lyme Disease. They didn't know what the rash was and misdiagnosed me with Baker's Cyst. I kept persisting with appointments when the pain steadily got worse and I also experienced numbness across my stomach and my neck.
On 15th September another duty doctor suggested Lyme Disease and bloods were tested. This was the ELISA test. It came back positive and I was put on a 28 day course of Doxycycline that week.
I experienced the Herx reaction, but it only lasted for 24 hours and I'd read up about it so wasn't too alarmed by it. It took about 2 weeks for the pain to subside, but I was able to function about half way through treatment.
As I mentioned, I still feel tired sometimes. I've always been a high energy person and so my family and I have noticed this change in me. The joint pain is getting better and doesn't stop me from getting on with my life.
This is a weird disease. Everyone's experiences are different and I think it's the vast amount of symptoms that throws the medical profession, who can't get their heads around it.
As with everything, it's all about being informed. There's some good groups that are recognised by Public Health England and the NHS that are liaising with the medical profession all the time to help educate both the clinicians and the public. If the weather conditions (mild and wet winters) continue, Lyme Disease cases will increase. I read a report from Public Health England recently that mosquitos have been found in this country that would not normally be able to survive our climate conditions. These can carry malaria and other nasties, so the authorities are aware of these pests and the potential health issues associated with them. It's just a case of passing this onto GPs and the general public too.
Hope that's of help to you.
All the best.