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    Old 08-15-2010, 03:18 AM   #1
    littlehutton
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    Lymes Literate DR UK?

    Hi, I have been having the strangest symptoms for 5 months now, I am still yet to be diagnosed, however I have not ruled out Lymes disease. I have had a basic blood test for Lymes which was negative, however after doing much research I am lead to believe that Blood tests often bring up false negatives. Does anybody out there know of a Lyme Literate Doctor based in the UK? I have searched the web but cant find any information, any help would be much appreciated.

     
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    Old 08-15-2010, 08:19 AM   #2
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    Re: Lymes Literate DR UK?

    Hi, I too have been looking for a Lyme specialist in the UK, and although I haven't yet found one in particular, I have found a clinic that apparently has a good record for conducting blood tests and the like.

    I can't recommend them through personal experience so you'd be wise to do your own research.

    Best of luck.

    Last edited by moderator2; 08-15-2010 at 09:07 AM. Reason: please do not post websites except as described in the Posting Policy

     
    Old 08-15-2010, 03:48 PM   #3
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    Re: Lymes Literate DR UK?

    Hi, thanks so much for the info regarding Lymes, I wish you luck in your quest for diagnosis! Its so horrible being in limbo land!

    Last edited by littlehutton; 08-15-2010 at 04:05 PM.

     
    Old 09-16-2010, 02:02 PM   #4
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    Re: Lymes Literate DR UK?

    Have you found LLMD.

     
    Old 09-16-2010, 02:49 PM   #5
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    Re: Lymes Literate DR UK?

    Hi

    I have not found one a such, but am due to go to a clinic in 3 weeks time who come highly recommended and are very knowledgeable about Lyme.


    Wishing you well

    Last edited by moderator2; 09-16-2010 at 02:54 PM.

     
    Old 10-07-2010, 04:54 AM   #6
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    Re: Lymes Literate DR UK?

    Quote:
    Originally Posted by littlehutton View Post
    Hi

    I have not found one a such, but am due to go to a clinic in 3 weeks time who come highly recommended and are very knowledgeable about Lyme.


    Wishing you well
    hello

    i am new to this forum. i have been diagnosed with lyme disease after over 4 months of strange symptoms, well western blot was weakly positive, i.e. inconclusive but my gp finally agreed that symptoms speak for ld. as i have all the symptoms my gp put me on antibiotics but got no experience on lyme and just follows the national guidelines, i.e. lowest dosage and shortest treatment period for antibiotics.

    i am interested in finding a lyme literate doctor who can give treatment and adequate support, and wondered if anyone has come across any in the UK. i know about this clinic but have found out that the "expert" in that clinic is retiring this month so no chance to get an appointment.

    i hope you could be seen at that clinic (i take it is the same as there seems to be only one single clinic in this country) and got some proper treatment.

    i will write my story when i am less tired. all i can say it was an odysee and still the diagnosis seems to be a clinical one as the first two Elisa tests were negative....

     
    Old 10-07-2010, 05:44 AM   #7
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    Re: Lymes Literate DR UK?

    Hello

    I am from the Uk, and I have an appointment tomorrow. It will be my first appointment there as I am yet to be diagnosed. The Doctor I am seeing is not officially an LLMD, however she is very experienced in Lyme and has worked along side Dr Daymond for many years, and I have been assured by many people that she is an excellent Doctor, and knows plenty about Lyme.



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

    Best wishes

    Last edited by moderator2; 10-17-2010 at 09:27 AM. Reason: please do not post doctor's names

     
    Old 10-07-2010, 06:40 AM   #8
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    Smile Re: Lymes Literate DR UK?

    hello again.

    just found your reply. did not expect to get a reply that quickly:-)

    i wish you good luck for tomorrow. worth writing down a few questions, and make sure you get the Western blot not just the Elisa test (just a recommendation from experience).

    i have the major problem that my gp is only willing to put me on the lowest dosage of antibiotics (2x100 mg doxycycline) and after reading lots of literature on the internet it seems that the dosage should be at least 300 mg if not 400 mg for doxycyline for up to a month whereas the nhs only gives out a couple of weeks or 3 weeks of the minimum dosage following their guidelines. sorry that i sound frustrated but i could not convince my gp today to change that. would be interesting to know if in Hemel Hempstead they have to follow the official guidelines or more the guidelines used by lyme experts.

    the thing is that through reading lots of facts on the expert webpages (german ones are more detailed as they have more cases) i know more about lyme than my gp knows which is not very reassuring.

    will stop moaning now as at least i have a possible diagnosis, whereas you are still in limbo. i am sure they can help you if they specialise in this. and yes the important thing that the clinical symptoms are more important than the test but you probably heard that before.

    good luck if you like let me know how you are getting on.

    Last edited by moderator2; 10-17-2010 at 09:27 AM. Reason: please do not quote posting rules violations

     
    Old 10-07-2010, 08:12 AM   #9
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    Re: Lymes Literate DR UK?

    Hello there!

    Yes you definitely need a higher dosage than what your Gp is prepared to give you, the trouble is that GPs are very reluctant to prescribe in the fear of being struck off, if they go beyond the NHS Guildlines. This is becoming very common.

    The clinic do not follow the NHS guidelines, they follow recommended doses of treatment from some of the top LLMDs, however of course this does come at a cost, and the NHS will not pay!

    I will be having all the tests available, (no expense spared!) I am desperate! They also test for all of the co-infections which is also very important. The tests they use are actually sent off to Germany and America, and are the best available in the UK, far better than any NHS standard test which I have already had twice with negative results.

    I too know more about Lyme than any GP or specialist I have seen, I have been studying the subject 24/7 for about 6 months now, so would consider myself almost an expert Ha ha! Something which seems to irritate most doctors!

    I guess it seems to be a case of becoming your own advocate because unfortunately very few people within the medical sector have any knowledge about Lyme whatsoever.

    Indeed I will let you know how I get on tomorrow, thank you for your best wishes. I hope you manage to sort out the correct dosage of antibiotics as soon as possible, but if I were you, I would not waist any more time with the GP!

    Wishing you well

    Ruth

    Last edited by moderator2; 10-17-2010 at 09:27 AM. Reason: not necessary to quote every post

     
    Old 10-08-2010, 01:27 PM   #10
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    Re: Lymes Literate DR UK?

    I would say that one month of antibiotics - even high dose - is not long enough to treat lyme - especially if you are a while down the road from your first symptoms.

    he is treating me on a clinical diagnosis - I have never had a positive test.

    Best Wishes to both you 'Englishers' !! x

    Last edited by moderator2; 10-17-2010 at 09:28 AM.

     
    Old 10-10-2010, 11:03 AM   #11
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    Re: Lymes Literate DR UK?

    hello jaynelouise

    as far as i understand it the nhs does not give out antibiotics for more than 2-4 weeks depending on the symptoms based on a positive test. is this why you went private?
    the llds always say to base the diagnosis on the clinical symptoms rather than tests alone; wished they had applied this to me 3-4 months ago (had two negative Elisa and a weakly positive result from Western blot after they repeated it).
    does anyone in this forum know what happens if symptoms do not go away after antibiotics treatment? does the nhs just "give up on you" and is this why people affected end up going private? i am looking into this at the moment and keep you posted. also going to see a neurologist this week and see what he says.

    thanks jayne-louise, very nice to wish us well. i wish you well as well. maybe you can let us know your experience with Dr. O. ? does he check for co-infections?



    i am on antibiotics doxycyclin for a week now and do not feel better or worse.

    Last edited by moderator2; 10-17-2010 at 09:28 AM.

     
    Old 10-10-2010, 11:36 AM   #12
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    Re: Lymes Literate DR UK?

    Hi fanderella

    Yours statement "Do the NHS give up on you", well yes they do pretty much, unless you are very very lucky. This is why virtually everyone end's up getting treatment privately.

    If you are lucky enough to receive any treatment on the NHS, it is never enough, unless of course you start antibiotics immediately after being bitten, which in most cases is rare, as most of us don't even recall being bitten in the first place. You have actually done well getting the treatment you have already had, but as Jayne Louise said, the dosage you have been prescribed is no where near enough.

    I would strongly advise you to seek private help asap before your symptoms get any worse. I personally would not waist my time with a neurologist, been there many times, and trust me, they know nothing at all about Lyme or how to treat it. Rheumatologists know more about Lyme disease, but they are few and far between. Finding a knowledgeable one could be tricky. Your best bet truly lies with an LLMD.

    I went to the clinic on Friday, They feel it is a strong possibility I have Lyme and they ordered all the tests for Lyme and the co-infections, so should have the results back in a month or so, the great thing is that they send you your results direct before the follow up appointment, so no more chasing results from GPs phew I am so nervous about getting yet another negative test result, though hopefully I shall be diagnosed on a clinical basis if need be! Gosh anyone would think I wanted this ghastly disease urgghhhh!

    Wishing you both well x

    Last edited by moderator2; 10-17-2010 at 09:28 AM.

     
    Old 10-10-2010, 12:15 PM   #13
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    Re: Lymes Literate DR UK?

    hello

    i am glad to hear you got the tests done. when i read your message it was like reading exactly what i experienced so far.

    will write again tomorrow as got a seven year old being impatient and it is her bedtime...

    i hope you will get the results earlier than a month as the waiting is always the worst. i know how you feel as i was the same i almost wished i got a positive result back to "prove" my symptoms, and get some piece of mind.

    i contacted the clinic but it is over 3 weeks before i can see dr
    good luck
    tipp of the day: even green tea has caffeine (and i gave up on coffee;p)

    Last edited by moderator2; 10-17-2010 at 09:29 AM.

     
    Old 10-11-2010, 11:07 AM   #14
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    Re: Lymes Literate DR UK?

    hello again

    can i ask if you were not treated cos the tests were negative so far? i am not sure if i mentioned it but my first two tests (elisa) were negative, and when i went to abroad to see my family the doc (internist) i saw ordered both tests, elisa and western blot, and this is when the elisa test showed positive and western blot borderline positive.

    Instead of relying on these tests my gp ordered a repeat test two weeks later (another wait) and then as the test results were delayed by another 10 days (another wait), i finally got antibiotics about 4-5 weeks after the test done abroad. both tests are inconclusive (weakly positive) if you go by pure interpretation of having to have several bands but with the symptoms there is more than strong evidence that i have lyme disease.

    what else? i am only going to see neurologist to check some of my neurological symptoms and to find if there is any medication or treatment (i was told that MRI scan for brain did not show any abnormalities which is a relief but did not get any other diagnosis).

    might be worth comparing our symptoms maybe (i think i listed 30 symptoms the other day that were spread over 4 months, some recurring but one of the two most worrying ones to me are muscle twitching at rest and at night, and stabbing pain in my toes that wake me up at night as very painful)

    spoke to my brother in the US who is going to try and find a lyme specialist to get some help as more prevalent over there but might take some time to get a name. cant see myself flying over for treatment but if worst come to worst.

    cant think of anything else right now so just wait till i get any replies.

    Last edited by moderator2; 10-17-2010 at 07:51 AM. Reason: please do not post websites except as described in the Posting Policy

     
    Old 10-11-2010, 03:49 PM   #15
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    Re: Lymes Literate DR UK?

    Fanderella


    I will tell you more about my story, Please bare with me, it's a long one!

    It started in March this year, I started noticing that I was feeling very tired, finding it hard to concentrate, and every morning when I woke up my legs were often quite stiff, I would lie there and stretch every morning before I could get out of bed, it sounds funny now but I thought it was just signs of getting old.

    Then I noticed my back and neck would get very stiff towards the end of the working day, I started to get nerve pain in my back, into my shoulder, underarm and down my left arm, I honestly thought I had a trapped nerve. I started itching on my back, neck, chest and face, especially my nose. Then came this weird burning sensation, first time on my cheeks, then it appeared on my neck and back, used to last for a few seconds then completely disappear. I went to my doctor at the beginning of April with these symptoms, though at the time I didn't even feel they were related to one another.

    My Gp told me I had a trapped nerve and to rest, and the itching and burning was probably an allergy. As there was no rash or anything, he didn't know what was causing it, but prescribed me some steroids. This was a real turning point for me.

    I started the steroids that night, and for 3 further days, until one night The itching and back and arm pain went into overdrive, I started having palpitations, chest pains, hot sweats, chills, burning sensations all over my body, stiffness, and panic attacks. At this point I was rushed to A&E (suspected heart attack). Had an ECG which was normal, blood tests, and xray's, all came back perfectly normal. I was so relieved, but then suddenly struck with the feeling of fear, because something had to be causing these symptoms.They sent me home, and suggested I go back to my GP for further investigation.

    Went back to the Gp next morning, and explained the symptoms, and my left arm at the time was completely numb. She suggested Lyme Disease, but she thought it was unlikely as i did not have a rash, she ordered the test just to be on the safe side along with a bunch of other tests. I went straight to the hospital that afternoon to get the tests done, then when I got home I googled Lyme disease, as before this GP visit I had never even heard of Lyme. I was shocked when I read about the disease, the symptoms were very similar, I was so relieved as I thought I would get the test results, and if positive I would get a round of antibiotics and all would be sorted! (If only I knew then what I know now). The test for Lyme came back negative, so the possible diagnosis was dismissed by myself and the GP.

    The symptoms continued to increase, I would get aching joints, sore throats, bruises everywhere, weight loss, cold wet sensations on my legs, sore spots, band sensations around my head, hair loss, constant stuffy nose, swollen neck glands, pins and needles, numb fingers, numb toes, stabbing pains, weakness in my legs, jelly legs, sore soles, twitching legs, feet, hands, head, lips and eyelids, breast and rib pain, eye pain, gritty eyes, swollen eyelids, vertigo, off balance feeling, ringing in my ears, tooth and gum pain, uneven pupil size, cracking joints, cramps, tremors, breathlessness, electric shock sensations. These are to name but a few, when I went to the clinic on Friday I had a list of 73 symptoms!

    As my symptoms started increasing, i went from specialist to specialist to find answers, I've been tested for Brain Tumors, Lung cancer, Breast Cancer, MS, Lupus, Fibro, ME, and loads of other stuff I cannot even pronounce. Every consultant I have ever seen, have blamed most of my symptoms on stress/anxiety and have all suggested I am simply depressed. I have always felt so strongly that it was not all in my head, and to be honest, it was all the doctors and the complete fear of not knowing what happening to me that made me deteriorate at a very rapid rate. I decided to abandon the diagnostic path for a while and get some rest, and clarity in my head about my situation. I started to feel better within myself and stronger, even though I still had symptoms. I started researching on the internet, and all my symptoms kept bringing up Lyme. I went to a private GP, who was sympathetic but did not know what was wrong with me, but agreed to get me another Lyme test done, this to came back negative, I was devastated.

    After much more research I realized, the only way I would ever find out if I have Lyme or not is to see an LLMD, which is when I discovered the clinic. No one else I have seen has ever come up with any form of a diagnosis or even cared, so I fear that the clinic for me is like a last chance saloon. After going there on Friday, it was such a relief that the Dr actually listened to me, took me seriously, and gave a thorough examination. The Anxiety theory was not even mentioned much to my relief.

    So here I am awaiting my results, could be up to 4 weeks, seems like 4 years! I hope this helps you understand my journey so far, and perhaps you can compare symptoms, though not everyone has the same things going on.

    I hope your feeling better soon

    Best wishes

    Last edited by moderator2; 10-17-2010 at 09:31 AM.

     
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