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I had Lymes Disease, can someone help me find an LLMD in the UK?

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Posted 8/15/2012 10:08 PM (GMT 0)
Hi all,

Ive heard of LLMD's in the UK through this forum and was wondering if someone could let me know how i locate one for myself. I have family in South Wales, so i could easily go to Cardiff... 

I was diagonised with LD about 19months ago. Ive had antibiotic treatment and ask for a re-test of LD, to make sure that its no longer in my blood and its not! Yay, but... Things are not improving for me and my doctor is retiring in the next year, so im freaking out!

It all started about 2.5 years ago, i found a tick on me, i had a complete melt down as i hate all creepy crawlies and the fact that something had sunk its teeth into me - oh dear! I did not go down well at all. Luckily, we had just brought tick keys for my sister, so we had removed this small tick from my leg and forgot all about it. I didnt get a bullseye rash, so i didnt think about it. Until, nearly a year down the line, i thought i was going insane because i knew there something wrong with me. Luckily, my twin had been doing an animal management course at college and after speaking to her tutors about my on going health issues, they suggested LD, which made her raise the question "But you have not been biten by a tick" Oh yes i had! How could i forget?? I was due to go in for a hospital appointment, where i asked to be tested for LD, explained the whole situation, no drama's, bloods were taken & it came back positive! Yes i thought, i wasnt insane, it wasnt all in my head and i was right... So, i was given antibotics (Doxy,for about 30 days) and i thought that would be it. Little did i know...

I cant remember how long its been since treatment, i cant remember what tablets i have been given, there has been sooo much, my cupboard is like a small pharmacy.
It gets better, nothing seems to work! Ive become allergic to Co-dine,migraine meds dont help my headaches, the normal paracetamol, Iburpfen dont seem to help either. Bless my GP, he has tried to help, but his hands are tied. He doesnt know what to do with me anymore, which doesnt fill me with hope. The specialist i saw was not very helpful, his attitude was "antibioitics are sufficent and one day you will wake up and poof, it'll all be gone"! That hasnt helped either.

Im 30 yrs old and to compare me with my twin, she is normal, im not, im like an old lady. Im not quite a cripple, but im not far from it, I have problems with just about all my joints, my sleeping pattern is out the window, i cant work. I went from having a life, to near on house bound in the past year and abit. Ive come so close to having mental & emotional break downs because of my situation. There are sooo many doctors and nurses that have not even heard of LD that it really bothers me.

I really feel for people that have had this disease, i call it a silent killer. My situation isnt as bad as some, but i feel that i will be going down the route of no return if i cant get the help i need.

Can someone please let me know of the LLMDs available in the UK. i will travel anywhere. Private treatment is not possible as i have no money and no one that i can ask.

Help? Anyone, Thank you please.

One of many Lymers x


Posted 8/16/2012 3:33 AM (GMT 0)
Hi Amylymer - welcome to the forum!

We do have some members from the UK on here so hopefully they'll be along to help you out some. In the meantime you can try looking through old posts by using the search function to see if that can guide you along your search a bit.

You may also want to look through the "new to lyme" thread - there's a lot of information there about lyme disease and co-infections. It's also important to understand that 30 days of doxy unfortunately is not likely to eradicate the infection. Your doctor may tell you that it is, but it's actually a really controversial illness. Many of us here have been dealing with this for a long while, only because we were treated based on this incorrect information.

In the meantime, there's always the option of finding an alternative practitioner, as they're often pretty open to lyme disease and are usually a bit easier to find. Good luck! We're here to help however we can!
Posted 8/16/2012 9:01 AM (GMT 0)
Hi Amy

My girlfriend and I are also lyme sufferers in the UK about your age.

There are a few options for treatment via LLMD in the UK, but not many I'm afraid and all are private.

Drop me an email if you'd like to know more - to avoid mentioning doctors on open forum. My email is listed in my profile.

Also suggest you join the yahoo group Eurolyme for European relevant information - Thats not to say you should leave this one as its great!

Best Wishes,

Hugh
Posted 8/16/2012 6:23 PM (GMT 0)
Hi Amy,

I'm also a lymie (perhaps ex-lymie; waiting to see how I do off antibiotics!) in the UK and am 30 years old too and used to be perfectly fit and healthy until a few years ago. I work outdoors, have had a few tick bites (but no rash) and yet it took years for anyone to take my seemingly random symptoms seriously or suggest lyme.

Your GP will be following guidance in their medications handbook, which will no doubt be 100mg doxy twice a day for up to 30 days. I suspect you then got a referral to an Infectious Disease consultant? Well, the NHS ones are pretty rubbish with lyme usually, but your GP does not actually have to do what they say. So, if you can find another expert to guide your GP he should be able to then give you the treatment you need.

Hugh is right in that most of the specialists in the UK are private, and this is expensive. However, you can sometimes find a middle road, like I did. I would suggest that you go back to your GP and ask if he will be willing to refer you privately for a second opinion. If he has been supportive so far then he should be happy to do this. You would have to pay for the initial consultation, but you might be able to get meds or follow-ups via the NHS. But, you are unlikely to get this if your GP doesn't refer you there in the first place. Hugh will be able to give you some contacts. Some of the private clinics offer reduced payment or suchlike for people on low incomes.

I managed to get long term antibiotic treatment (1 1/2 years) via my GP by seeing a private consultant for a second opinion. This meant all my meds were free - I live in Scotland so no prescription charges. I think there aren't charges in Wales either, so perhaps you could register at a GP down there to get the meds free? I have heard there is an expert in Cardiff, but I don't have details. It would be worth asking BADA-UK (www.bada-uk.org/) for advice - they are great!

Good luck,

Kirsty
Posted 8/16/2012 8:44 PM (GMT 0)
Hi Kirsty,

Thanks for your reply. Sorry to hear that u have had this also. Its horrible isnt it! Ive been referred to a specialist and seen him a few times and he was useless! And my GP is retiring next year which has thrown a spanner in my works as he is the only person I know of that has witnessed LD and had a previous case. Hence wanting to find someone else to help.

Thank you for your advice, i will definitely use that when it comes to prescribtions etc.

I hope your recovery goes well! :o)

Off to do further research. Thanks guys

x
Posted 10/9/2015 5:58 PM (GMT 0)
click on the blue envelope under where Worrypot's screen name is displayed - to the left of the post. That should bring up your email service with their email address already in the right place. If not, email me and I'll help.
Posted 10/9/2015 7:13 PM (GMT 0)
I have a very good and inexpensive Lyme doc in the UK. I don't currently live there but have been back to the UK several times to see her.

She is a retired GP so while being able to prescribe meds she is mot bound be tbe NHS's restrictive regulations on treating Lyme.

She both diagnosed and treats me.

If anyone here would like any info please drop me an email and I will gladly pass on all and any info :)

Edited to add - I got your email and sent you the info. I hope it helps :)

Post Edited By Moderator (Traveler) : 12/30/2015 10:47:22 AM (GMT-7)

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