Jus finised tratment, advice on recovery please
Posted , 6 users are following.
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
caroline91964 steve6874
Posted
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.
steve6874 caroline91964
Posted
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.
caroline91964 steve6874
Posted
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.
steve6874 caroline91964
Posted
Every informative thank you. My bite to treatment was simalar gap, bit October began doxy January, however my symptoms worsened so was put on IV.
You defo right about NHS, esp GP, needing to educate about Lyme and other disease that could arrive; especially with climate/travel changes.
It is a strange disease with many different people effected differently.
I'm sure I will get there just need to be patient.
Mitzbitz steve6874
Posted
I'm new to this Lyme journey so just doing some research. I noticed that you had been treated at the RVI. I am waiting for my referral, so i wondered if I could pick your brains on your treatment?
Also is it OK to ask which Doctors you saw?
I cant nelieve how poorly ive become so quickly, despite being young, and enjoying going for run etc a few months ago!
It all started with a bite on my head, then stiff neck, back etc. Now starting with neurological symptoms, tingling/numbness, tinnitus, heart murmur. Its all very scary !
I would be really grateful for any help and advice.
Thank you.
steve6874 Mitzbitz
Posted
Sorry for delay been away.
I was bit October 2014 started treatment Jan 2015 at first I was on doxy twice a day but this did nothing for my symtons (by this time could not move left arm at all and legs starting to go) I was transferred to neurology. At RVI, was seen by Dr Guadagno(consultant) who was fantastic. He spoke with ID consultant, Dr Schmid, who took over my care and put me on Iv ceftriaxone twice a day. This worked wonders for me though am still left with nerve damage in arms and legs which is slowly repairing. I also developed a frozen shoulder so and was referred to a mr Williams again at RVI. I must say my experience and treatment at RVI has been fantastic, I still have ongoing issue but am a lot better with there help.
Hope that helped, please feel free to ask anything that may help further.
Steve
Mitzbitz steve6874
Posted
Your reply is hugely helpful.
Can I ask how long you were on the IV ceftriaxone? Also, did you do anything else to help with your recover? Supplemts or exercise?
I hope I get to see the same team at RVI as you - it sounds as if you have been well looked after
Thanks again.
steve6874 Mitzbitz
Posted
Your right I have been well locked after by RVI and feel lucky compared to some people's experiences I have read.
I was on Iv for three weeks and doxy two week before that.
I never realy took supplements etc, I eat more garlic, which I'm told is good, I drank a lot more water and try yes to detox and reduce all the rubbishy I eat.
Exercise wise I did light stretchers and as legs get better shirt walks building it up as I can.
I still have issue with feet and knees so can't realy do much heavy exercise just yet.
I would advice you to join the uk discussion FB page there is some realy informed people on it. I've certainly learned a bit from there. I've tried to keep a positive attitude as think that helps.
Hope this answers your question, anything else just ask. Good luck hope you get the care you need
I would be interested to hear how you get on
Steve