New here, possible LD?

Firstly hello to everyone, I've been lurking for a couple of days reading a lot of the great info on these pages.

A bit of background info, theres a lot but I'll try my hardest to keep it shortish..

I'm a 37 year old male in the UK, generally fit and well until December '08 when I was admitted to hospital for a week with varying symptoms, tight chest with pains, lightheadedness, cold chills running up my legs and arms to name a few, various bloods and other tests were done, all coming back normal apart from blood glucose, so I was told I'm type 2 diabetic and sent on my way (HBA1C was 8.0), all of the symptoms I was told were typical uncontrolled diabetes, so I worked hard and got my next HBA1C down to 5.4, lost 30lb's and still the symptoms have got worse, despite vigorous bg testing and dietry (and as much as permissible with the symptoms) exercise regimes.

Since then I have had various symptoms come and go, some staying longer than others,including shooting pains in various parts of my body,cold sensations, numbness, pins and needles in my arms, hands and around the face and scalp, numbness in the mouth, difficulty swallowing, pain and occasional ringing in the ears, a neck that cracks when I move it, and also my wrists, visual disturbances, light sensitivity, "flashing" just outside of my field of view and the worst of all, the lack of coordination, and a weird numb feeling in my head and a feeling of being drunk and off balance, this is the really debilitating one, which has led to me closing down my business due to not being able to drive most days, I also suffer from a lot of redness, and flushing/changing skin colour between white and a bright reddish pink, inability to get to sleep and poor hand/eye coordination, despite numerous blood pressure tests being normal, I have been told I have Raynaud's Syndrome, and the latest guess from my endocrinologist is that I have suffered some kind of brain stem trauma or stroke and I'll have to get used to it, quite how he came to that conclusion I dont know, but he did a rather good job of upsetting my wife who's 5 months pregnant in the process

I remember around 3-4 years ago working on a car that had been sitting in long grass for a while on a hot day and looking down to see a tick on the top of one of my feet (I managed to get matching bites on both feet as it happens that day) which made my feet swell enough to stop me walking for over a week, and a rash was left behind, not the bulls eye that I have seen mention of with Lyme but more like very heavy freckles if that makes sense, on the bridge of both feet, the black spot is still visible to this day...

So I guess what I'm trying to say is does this sound like Lyme to you all, I know there's no such thing as a typical case but I dont have any real bad pains as such, just constantly changing unpleasant symptoms and this darn pressure in my head/eyes, I did mention LD to my doctor but was told a test wasn't needed because we dont have Lyme here (yup, he comes out with some real classics), I also know that if I do manage to get a test there's a high chance of unreliable results anyway, so where do I go from here, I'd love to be able to go private and get this sorted out but losing the business means I'm struggling to keep the house as it is, without paying a load of medical bills that I already pay for in my taxes (or did when I was working at least).

Thanks for reading, and I hope it was fairly to the point at least, Andy

Thanks for the reply, my main interest is in types of testing, I know that in the U.S they use 2 main types from what I have read, I'm interested in what options are available within the UK, although from what I have read about LD in general over here I get the feeling my options are going to be limited, Andy

Hi Andy, I am here in then uk too and have battled the system for around two years. Unfortunately just this week I have lost all suport from the NHS and my GP in my battle with LD. I now have to deal soley with a private LLMD (who is great by the way, but expensive). Sorry but when it come to this disease your taxes have been lost, the brick walls you will encounter are very thick and always state "sorry my hands are tied", or as they know very little about LD they will presume and diagnose another illness. You need to know about this disease and educate the Dr's you visit, read as much as you can and take it in. The ELISA test in the UK is unfortunately way off the mark when it comes to accuracy, I had 3 all neg. I paid £600.00 to have blood sent for a Westernblot to the USA, this confirmed my infection. It sounds a lot of money but that piece of paper the results came back on, was worth every penny, you see the Dr's can't dismiss you as paranoid then. If you do have blood tests for LD done by your GP and they come back neg they will probably dismiss the idea of LD and you will get no treatment, if they come back pos your treatment will consist of 2 weeks of Doxy as that is what our government insists cures LD.....................and that's your lot. The trouble is now I am diagnosed they have all dropped me like a hot chip, sorry but private is the only option you have if you have LD.

Good luck in your fight. Mik

Thanks for all the replies...

I get a lot of weird stuff going on with my skin, the flushing, a feeling that something is resting on my arm or neck (like an insect has landed on me) but when I look there's nothing there, sometimes itching or burning, and a weird "buzzing" sensation in my scalp to name a few, my symptoms all started with me waking every night with the sensation of being sick, then numbness in the throat and tongue, which was put down to acid reflux, although I have never felt any acidic sensations...

Mik, sorry to hear the NHS have stopped supporting you, its a crazy situation, my doctor has sent me through several different routes up until now, the ENT have finished with me, saying there's nothing wrong and it could be a stress thing, the endocrinologist has hinted at a brain stem trauma or stroke, MS, carpel tunnel syndrome (despite all tests proving otherwise), Celiac etc etc, its like their just taking a shot in the dark, now, almost 15 months in I've finally got an MRI date through for my head which happens in a couple of weeks, that in itself is pretty scary although I'm hoping it will come back clear so I can get on with chasing my doctor back up, although I'm guessing the Western Blot test is the way forward at that point and well worth the money to at least get a chance of finding an answer to all this.

My doctor is getting slightly less than receptive now (this is my 2nd doc in 15 months) and I'm guessing that me asking for a Lyme test will be the straw that breaks the camels back, but I will soon find that one out...

Is there a resource for finding LLMD's in the UK, I've hunted about but cant find one, and having read the site for the Westernblot it appears that the test has to be sent in by a doctor, is this the case from the UK as well or just the US, sorry for all the questions and thanks for your time, Andy

Hi Mik, thanks for the reply, very informative, today's little twist is a letter from the gastric dept at the local hospital discharging me from their care stating that my illness is nothing they can deal with and referring me back to my GP, which is basically what I expected, so 15 months in and still at the starting blocks lol

The GP's surgery I'm at has a few internal problems going on and reading between the lines the partnership that exists is about to be dissolved, leaving me a month wait at least to see my doctor (if he's still there at that point) or an appointment with a locum in a fortnight, living in rural Norfolk choices are limited so I'll have to go with that for now.

I'll ask for a course of antibiotics and hopefully get them to try, and will ask for the bloods to be done, was for a start quite laid back with the doctors and just assumed that they were working to some kind of order, but have since realised that once things get past a certain point they look as if they lose interest and just appear to be running around in circles to be seen to do something, so I understand that its up to me to take this to them now which is going to be interesting.

I'd appreciate it if you wouldn't mind sending me over details of the lab in Scotland and anything else you wouldn't mind sharing to give me something to get my teeth into, my email is [email protected] , once again many thanks, Andy

Post Edited (under_the_radar) : 2/5/2010 8:15:07 AM (GMT-7)