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Posted 10/4/2010 1:46 PM (GMT 0)
Hello

I am from the UK but have been working in the USA, I have just been diagnosed with chronic Lymes with lots of central nervous system issues, joint stuff, fatigue etc etc, have had it for a long time as orignal tick bites 5 years ago. Need to go home to see a LLMD in the UK, please can someone help me find one?

Posted 10/5/2010 12:47 AM (GMT 0)
Hi Susisq!!!
Welcome to our forum!! I am really sorry that you have a need to be here, but I'm sure you'll find us to be a helpful, caring & understanding group.
I don't know of any LLMD's personally over in the UK, but CanLyme (a Canadian support group) has quite a bit of info ;
Here a link;
canlyme.com/

On the opening page, on the left hand side, you will see a 'button' for "World Wide Support finder". Click on that and it'll take you to a page full of support groups. Near the bottom of that page you will see where it says "Other countries". If you will click on that, it'll take you to info that I think will be helpful for you.

Are you seeing a LLMD now? Have you started any treatment yet?
We are glad to have you here!
Trav
Posted 10/6/2010 4:36 PM (GMT 0)
There is a member here from UK that is seeing an LLMD in UK, maybe he can help you? The first 3 letters of his name are

mik

He posted on my Sad and confused please help thread. Try to click on his Id there and see if there is an email available, I am sure he will want to help if he can. Or post something there for him, maybe he will see it.
Posted 10/6/2010 10:03 PM (GMT 0)
Hi

I am from the UK, and I am seeing an LLMD in the UK on Friday.

The one I am seeing is in Hemel Hemsted, Hertfordshire, there is also one in Cardiff. and in Newcastle.

These are the only one's that I know of, there are very few LLMD's here. I think only 4 or 5 in the whole of the UK.

If you need any more info, let me know, best of luck...
Posted 10/6/2010 11:38 PM (GMT 0)
hi, i am new to this too, i am in uk I went to breakspear hospital in hemel for help with M.E. Had tests (western blot) which showed some postive and have now started treatment for chronic lyme. Am on doxycyline and loads of supplements. downside is you pay but I have had no luck with nhs. there is a lyme centre nhs, in southampton am going to look into. would love to hear how it goes....good luck
:-)
Posted 10/6/2010 11:56 PM (GMT 0)
Thank for your help. I got the info for the hospital in Hemel and I am going to contact them. Do they cover on the NHS after first visit or just not at all? I am seeing a LLMD in the USA but the cost is very high. Elbell I would appreciate any info you have on the center in Southampton. Littlehutton I would appreciate any info on the place in Newcastle.
Posted 10/7/2010 12:27 AM (GMT 0)
Hi again

will add link for the nhs one in southampton, http://www.hpa.org.uk/ProductsServices/InfectiousDiseases/LaboratoriesAndReferenceFacilities/LymeBorreliosisUnit/ if that doesnt work type in your search engine lyme centre southampton uk

I think you need a referal from your gp.

with regards to Hemel hospital it is very rare to get funding. I couldn't sadly. I tried to get my perscriptions from my G.P too but because hemel hospital does not stick to naice guidelines they wouldnt pay for that either. Hemel does have a trust fund but is currently taking no more applications. i have been lucky as in some very good friends have helped pay!
Posted 10/7/2010 8:14 AM (GMT 0)
Hi Susie

The Break Spear Medical Group in Hemel Hemstead is highly recommended, I am seeing Dr Monro, but there used to be a Dr there called Dr Daymond, who has now left the practice and gone to the Nuffield Hospital in Newcastle, he is also very highly recommended.

The best place for you to go for info on both of these places is a website called Eurolyme, it is full of people throughout Europe and the UK who have a wealth of information and experience, this is where I found out about Hemel Hemstead.

The place in Southampton will probably not be much use as they follow the NHS guidelines, produce lots of negative results and very little help, I would not recommend them at all.

You may be able to get a referral from your GP for the Nuffield, Newcastle and the Break Spear, however getting NHS funding is extremely difficult, and most people I have spoken to have to fund their own consultations and treatment, which is what I intend to do.

Please go to Eurolyme, they will be able to give you so much advice in regards to this. They are excellent!

Best of luck, please let us know how you get on.

BW
Posted 10/7/2010 9:11 AM (GMT 0)
Hi littlehampton

I have been going to breakspear for 3 months with dr munro for treatment of lyme. Would love to hear how you get on. Am new to all of this, will look at the euro lyme too. Interesting to hear what you said about Southampton.

Regards M
Posted 10/7/2010 10:11 AM (GMT 0)
Hi ellbell

Will post on here tomorrow and let you know how I get on at Break Spear, what did you think of Dr Munro, and how is your treatment going?

I have heard bad reports regarding Southampton, unfortunately any help on the NHS seems to be fairly non existent as I have learnt the hard way this year, only wish I had discovered the Break Spear sooner.

Yes, please do go to Eurolyme, it is a wonderful source of information, with lot's of members from the UK which can give you so much advice regarding the disease and the treatment options, as well as great support.

All of these boards including this one have been such a great help to me, I dont know what I would have done without them!

Best of luck to you, I will keep you posted

Best wishes

Ruth
Posted 10/7/2010 11:39 AM (GMT 0)
Hi Ruth

First I saw dr yeoh after 3ys diagnosed with M.E she ordered westen blot test and other tests. Then she went on hols so saw dr munro for the first time when results back. She was very nice and kind and knows her stuff. She said the results showed lyme. Different countries have different guideline for example my lyme result would be considered positive in scotland but not england!. So like you say nhs support and treatment is pretty much non existent.

I have been given doxycycline (abx) 400 mg per dayfor min of 3 months and will prob be on longer as have been bad for 3 years. I have also got about 20 supplements including probiotics.

I have been taking abx for 6 weeks and supplements for 2 half weeks ( had to find money!!!) Have had some very slight improvment. but then have days when its unbearable...I think this is the herx people talk about. its hard to tell.

I have read it can take months for abx to take effect. anyway thanks for reply and look forward to hearing your update.

Regards
Maxi
Posted 10/7/2010 12:46 PM (GMT 0)
I have had this for 5 years but was diagnosed with Poly Arthritis, then 18 months later Fibromyalgia and then Chronic Fatigue Syndrome (ME in UK) then panic disorder/depression (I have neither of these, just some anxiety). My symptoms were just getting worse and worse. I was treated for Lyme 5 years ago with a 2 weeks course of Doxy but no Dr ever put 2 and 2 together as to what been going on ever since.

Any how I am trying to move past all that now I finally have a proper diagnosis. I am wondering if the treatment costs less in the UK than over here in the USA. (something I need to look into)

I would like to go home to be with my family and friends but I am still working in US and would have to give up my job here to go back to the UK and then would not have money to pay for treatment, saying that don't know how much longer I can keep up the job with all this lot going on.

I did have private health insurance (from the UK) that covered me over here but they dropped everyone in the USA 2 years ago due to the rising health care costs over here

Guess I am in a big dilema :-(
Posted 10/7/2010 1:04 PM (GMT 0)
Hi Susie

I am not sure how much the treatment costs in the UK, as I am not on any treatment just yet, however if you do look at Eurolyme, There are lots of people in the UK who are on private treatment, and I am sure they will be able to advise you about the costs involved and their experiences with this.

Unfortunately Insurance in the UK does not cover Lyme treatment, and the NHS very rarely are prepared to pay for it either, though it is still worth investigating, because some people have been lucky enough to get some treatment through them, though sadly it is not usually enough. GPs are very reluctant to offer treatment long term in the fear of being struck off, it's a complete scandal.

Though expensive, you are far better to see a LLMD and get the required long term antibiotics privately.

Best of luck

Ruth
Posted 10/7/2010 2:57 PM (GMT 0)
Hi susie

It sounds like you have had a difficult few years. It will be good to have support when you are back in the UK and at last you have your diagnosis. The breakspear website has a price list for the consultations. The actual antibiotic which I take Doxy is approx £10 that lasts about 12 days. The supplements I take cost £700 for about 3 months worth but I have about 20 different ones and they also treat other issues. Hopefully I wont need to continue all of them. Everyone is different and they treat your specific issues.

Until you have your appointment you wont know what treatment they may suggest. They will give you estimates so you are aware of costs. I am a lone parent and have had support from friends. They are aware of this so know I cant afford continual large amounts of money.

I dont know about the cost in other places. I hope this helps, regards maxi
Posted 10/7/2010 4:07 PM (GMT 0)
Thanks, I am currently on Doxy and will start IV abx in about 3 more weeks. I may have to just stay here in the US and tough it out so as to keep my job. Maxi what supplements do you take along with the antibiotics?
Posted 10/7/2010 5:24 PM (GMT 0)
Hi Susieq64, I've been under Breakspear for last year or so, from the hospitalts I called they seemed to know more about the treatment of LD than the others - but that is just in my experiance. Unfortunately nothing is free, there's no NHS provision there, and I'm sorry to say it can be quite expensive. The NHS will not provide you with treatment either, only 2-3 weeks of Doxy then they will cut all treatment (chronic LD doesn't exsist over here either)(!?!). Please be prepared for a very long expensive road, I have been on ABX for 14 months now but have made progress, it's been very slow but I'm getting there. Sorry I can't talk for longer, I have to go now but anything you wish to know regarding LD in the uk let me know and if I can help you, it would be a pleasure. There are some very knowledgable Lymies on here that I'm certain will help you with whatever you ask.

If you need to know the cost of treatment let me know and I'll answer when I can. Good luck.

Mik.
Posted 10/8/2010 4:56 AM (GMT 0)
How are you feeling, Mik? I'm still waiting to see if my insurance will cover the Rocephin. I called the PICC hot line, but they did not get an answer from the insurance company. Hoping to find out tomorow, if not, it will be a looooooooooooooooong weekend, just like the last weekend!
Posted 10/8/2010 8:13 AM (GMT 0)
Hi Simela........today I'm feeling great thank you, I hope you too are doing well. I've had a few really good months before hand but this month has seemed to waste me, both emotionally and phsyically. The Doc changed my meds about 2 months ago and 4 weeks in to the change I started to have more regular symptoms, whether the new ABX are not working as well as the previous lot or they are working and I'm herxing I'm not too sure but what I do know is this disease is sooooooooo confusing. After 14 months of agressive ABX treatment you'd have thought that any horrile little bacteria would have died off (?), LD is such a strange disease.

I've got my fingers crossed for you today in a bid to sway the insurance company in your favour, after your very difficult decision to take the new med I hope now that you manage to get it. Good luck with that - and as my morning has started so well, maybe a little will brush off on you and your day will be a good one too.

Mik.
Posted 10/11/2010 3:54 AM (GMT 0)
Hi

Suzie the supplements are : reduced glututhaione, gluthamane, absorbic acic, chlorella, oregano, bromelain, interfase plus, boluoke, nsk sd, lactoferrin, therbiotic, mutaflor, edta ca(suppository), artesunate, l tyrosine, selenium, iodine. I think that is it. I have them for 3 months then a review. some of these are because there is a lack of good bacteria in gut, not sure if that is a lyme thing?.. good luck with the abx

Hi Mik, was good to hear you have made progress with breakspear I am 7 weeks into treatment there under dr munro. When did you start getting some relief? Sometimes I get where I cant get enough air (feels like) this freaks me out! they want me do do a quaf of quif test for fatigue. Did you do this? if so was it helpful?
I have stopped sugar, is there anything else you can advise that has helped you? I hope your progress continues well. You have given me hope : )
Thanks....maxi
Posted 10/11/2010 9:56 PM (GMT 0)
Hi Maxi.......my very worst set of symptoms were in my head, although some of my physical symptoms were pretty horrendous too, but within a month of starting treatment most of the most severe mental stuff had subsided (but not all). Unfortunately for me I then started to herx fairly badly with lots of fatigue, pounding heart, shooting pains and nerve pain etc......Although I'm still having a few days a month that intermittantly knock me off my feet I am doing fine. Over the last 14 months of treatment my progress has been very slow but it has been in the right direction, I feel I was lucky as I saw the tick and the rash and although the first wave of abx from my gp was unfortunately inadequate I sought treatment myself within about 15 months of the bite; which was pretty early I suppose.

I did have the odd bout of air hunger but it was never a symptom that gave me problems, as I don't know anything about the "quaf & quif " test I can't advise you but yes, you need to be careful what BS want to test you for as they do have to make money - find out what they would discover from the test and if you think this would help you and them in any way regarding your LD, and weigh up if the cost and the end result are necessary. Remember they work for you, as you pay them, you can always say no if you think the tests are pointless. It maybe wise to start your own thread and the ask the very knowledgable members on here about the test and what may be gained from having it.

On the advice from my Dr I have given up sugar, dairy, gluten, caffine and alcohol (although the odd glass of red wine finds a way of falling in to my hand) and stuck to it fairly well, I have also bought an IR sauna (fantastic machine) the Bb doesn't like it at all, I get really bad nerve pain and tingling while I'm using it - it's the only time I don't mind the pain cause I'm bugging the bug.

I hope you symptoms soon become easier but this is a long road, be prepared......and stick to your Doc's advise and treatment protocols as closely as possible. Good luck with it all.

Mik.
Posted 10/11/2010 11:39 PM (GMT 0)
hi mik

thank you so much for sharing this, you are a great help and to know you are moving forward is so good to hear although its not plain sailing . I am still amazed how a bite can cause so much pain and distress. thanks for the advice will call bs tomorrow for a chat about the test and set up a thread.

will probably pop to the docs about the breathing as my anxiety starts getting the better of me and I start panicking. I think my hearts packing in or my lungs its probably all part of the lyme its scary stuff but am determined like you say to stick to the rules and face the journey!!

best of luck to you too

maxi
Posted 10/12/2010 4:36 AM (GMT 0)
Mik,

I have had a few rough days, but today and yesterday were ok. If Bartonella gives herx every 4 days or so, as you say, I probably do have it, bec I do not have cycles of one month, as with Lyme. I will see my LLMD on Nov 2nd and will probably add a drug for Bartonella bec he believes I have it. I am glad you are doing well, you've suffered enough and took so much medicine already. It is always uplifting when you feel better and makes you deal with the worst days easier, bec you know some shinny days will be just around the corner!
Posted 10/12/2010 5:58 PM (GMT 0)
Yeah it's very scary stuff Maxi, I had lots of anxity and I still do panic a little when my heart starts to bounce, I too feel it's about to give up the ghost but luckily it never does, although this only happens now when I have one of the bad days. LD also seems to make you feel sorry for yourself (?), maybe it's part of the anxiety I dunno but I do know with any other condition I can just up and get on with life, now with an LD attack I could just curl up and die........bizarre!! You're right though it's amazing how one little bite from an infected tick can cause such a life changing illness like LD and just about the only people who understand it are the souls suffering it, apart of course from the heaven sent LLMD's.

If it's any comfort my mental issues, anxiety being one of them, started to diminish in around 4 - 8 weeks of starting treatment. Of course when I herxed it returned for a while but when my days got easiler so did my head. I know every one doesn't respond the same to treatment but I have my fingers crossed for that you get some respite from it soon as I know how terrible it makes you feel about things.

Funny that I've been to see Dr M at BS today myself, a check up and a CD-57 blood test. A seven hour round trip for 15 minutes with the doc, and of course a lot lighter in the pocket...........but it needs to done! Hope you get some answers, either from BS or from the thread you put on here regarding the quif tests, you're asking the right people I'm certain.


Hi Simela, I'm really pleased that the last couple days have been OK for you.....long may they continue......I know unfortunately they may be short lived but make the most of them anyway. Sometimes I feel so good I wondered what "yesterday" was all about, bitter sweet moments that makes this disease so confusing. YAK!

Obviously I can not say whether or not you have Bartenella, but when I was herxing every 4 weeks (after 6 months of treatment) I Googled everything I could think of and found that B.b has a reproductive cycle of - every four weeks so I concluded that as the new (or old) spirochetes re-entered my blood stream the abx were zapping them and poisoning my body. At the beginning of my treatment I was ill in cycles of 5 days so I Googled that at the same time and found Bart reproduces its self after 5 days so, yes you guessed it, this was my conclusion for that too. I'm no expert and could be wrong but to me it made sense. I never had a + test for Bart but I did have an equivical result which suggests I had it. It would be worth having some blood works done for Bart to see?

Hope you have another great day tomorrow.

Mik.
Posted 10/13/2010 4:19 PM (GMT 0)
Hi Mik,

Am sorry you had to go through so much pain, anxiety is horrible. But what a relief to know we are not alone. I have been on doxy for about 6 weeks I think I do have some improvment in head . Night times always seem worse!! I saw my normal gp about the breathing he prescribed opeprozole thinking it might be acid...oh well worth a try!

So you was there yeaterday, yes your right it has to be done. I must admit I am lucky I live 15 mins away.

Take care and thanks

Maxi
Posted 10/13/2010 5:34 PM (GMT 0)
Thanks Mik. Yes, I am doing pretty well today, started laundry and cleaning--baby is sleeping, but that won't last too long! Thanks for the info, I know you are not an expert, but some experts or regular MDs don't even know as much as us, so I find a lot of good info here, and always good advice that at least gives me a clue on what I MAY be experiencing. If my LLMD will think that I should test for Bartonella, I will, but he wants me to start treatement soon for that. I will start Rocephin this month, probably next week or the following week. Still trying to get all set up for that, a lot of phone calls to make.

Best wishes!
Simela :)
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