New here, possible LD?

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under_the_radar
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/2/2010 5:38 PM (GMT -6)   
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

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 2/2/2010 5:59 PM (GMT -6)   
Hello Radar,

It sounds like looking into Lyme Disease testing would be very sensible for you. I cannot help you with dealing with the National Health System as I left the UK decades ago. What I can do is encourage to not let you doctor's misinformation stop you from getting a proper diagnosis and treatment. You've heard your elders say, "Ahh, your health is everything." It is. Defend it.

There are other people on this forum from the UK, perhaps they can offer some tips?

under_the_radar
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/2/2010 6:13 PM (GMT -6)   
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

Carly18
Regular Member


Date Joined Apr 2009
Total Posts : 125
   Posted 2/4/2010 12:23 PM (GMT -6)   
OMG .......you have so many of my sympthoms. I have had the red/flushing skin. Does your skin burn too? I have had so many tests. I had vertigo last year, the room was spinning and I couldn't walk. I ended up in the ER, several tests later, all coming back normal, they said it was benign positional vertigo. I have had trouble swallowing and burning in my throat along with a strange taste, they said it was acid reflux. It was never the burning or taste like acid though. I took their medicine and that got my stomach burning so bad I couldn't hardly stand it so I stopped that and evenually that got better. After lots of money, tests and doctors saying "I'm complicated" I decided they can't or are not going to help me so I went one more time to just get a muscle relaxer for my throat and  this doctor looked at all my medical information, by this time was pretty long, and she said she would recommend me going to a homeopathic doctor. She said clearly I'm not getting any help. By this time I was willing to do anything to get relieve and some quality of life back so that's what I did. I have never had anything to do with alternative medicine before and I began to learn a lot about it from that point on. I have never gone and gotten tested through any other clinic for lymes except thorough my hometown one and I tested negative. I don't know if this is lymes but I got tested for everyother thing possible and all tests came back normal and I wasn't getting better. Since being on remedies I have my strength back to where I don't get as tired out as before and my sympthoms are getting less and less. I still have a ways to go but so far so good. I would recommend this treatment to everyone, I like to stay away from harsh drugs if possible.

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/4/2010 4:43 PM (GMT -6)   
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

pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 2/4/2010 7:19 PM (GMT -6)   
My friend so is the case in USA. I am paying through my teeth to get treated, and best yet no guarantee of what works. Doc is trying his best but its not his fault. The disease is somewhat not easy to measure. Blood tests lie all the time.

under_the_radar
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/4/2010 8:07 PM (GMT -6)   
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

mikazmat
Regular Member


Date Joined Sep 2009
Total Posts : 133
   Posted 2/5/2010 7:48 AM (GMT -6)   
Andy no problem, after the battles I've had with my GP and other medics I'm happy to help you out. The Westernblot is apparently available on the NHS through a lab in Scotland, I do have the address and if I can mail you privately I'll send it to you, I don't know how accurate their test is but at least you have a chance of getting it for nothing. I'm sure though that even a well established lab like the ones in the US can give wrong results, maybe you could ask on this forum. For a test to be sent to IGENEX in the US does have to go through a Dr, a private one. £600 for the privilege.

Your story so far echoes mine, I was sent down all the routes you have been sent. Nobody listening to you?? They seem to only follow the presedures they understand and not thinking out of the box. Maybe I was lucky (or unlucky) to have a poss result from the first Westernblot I had but it was a great day for me as I could then wave it around under all their noses and say "I told you so". If other things are rules out and they are stabbing at a diagnosis you will almost certainly have to go private, LD is diaganosed clincially and on your medical history, the blood test is really just to confirm it (but the science stands up in the UK). The trouble is if a Dr doesn't know what they are looking at how can you get a diagnosis? At least the private Dr can treat you just though your clinical symptoms. Have you asked you GP for a course of ABX to try, to see what happens?? A months course of Doxy 200mg 2x a day would give you a very good indication if, what is causing your problem, is bacterial. I would have tried anything to have alleviated my problems.................anything!!

Don't be affraid of the Dr, you HAVE to stand up for yourself. If they are not giving you a proper answer to what you think is wrong with you they will let you walk away and suffer in silence. I can't stress enough how important it is to learn about LD because the medics here don't get taught about it, because it "doesn't exsist". Do you own investigations and if you are still convinced that you have LD you need to take it on yourself to go forward.

I will send you the details of my private Dr who works from just outside London but there is one in Bolton. From the first responses I got the London based hospital knew more about LD, maybe that's just how I intepreted it.

Have to go now Andy but good luck with it mate. Mik

under_the_radar
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 2/5/2010 9:12 AM (GMT -6)   
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 andy@scsf.co.uk , once again many thanks, Andy

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

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