Lyme Disease Community
Help finding a good LLMd in UK
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Help finding a good LLMd in UK

Hi to everyone! Let God bless all of us! I was bitten by ticks 3 years ago while the feedings birds in the Regents Park,London.P thought it is just stress,was like a zombie,couldn't think,feel ...and realize that something wrong is going with me :(
Need any advice,help how to fight and find a good experienced  doctor in UK ,can't give up ,have a son of 12 who needs his mum,
  Best Regards and good luck to everyone!
21 Comments Post a Comment
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Just me again,half of my message disappeared...and so hard to type again,having problems with my hands
My message was Hi to everyone! Let God bless all of us! I was bitten by ticks 3 years ago while the feedings birds in the Regents Park,London.I had about 10-12 bites on both my legs,next day went to the hospital,had a fever,rash,swollen legs and very " good and experienced"doctor said nothing serious ,no worries thanks to Her! She prescribed me some antibiotics for 3-5 days and I forgot myself....
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But now....it's a lot...can't walk properly,can't hand even phone on my hands,can't type a long message,pain pain  ..feeling dizzy all the time,fever the last 3-5 months 37.1-37.6,heart problems...beating so fast even when I sleep and pain ,headaches,sleepy all the time ...
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I lost my mum a half year ago ..lost myself after that I  thought it is just stress,was like a zombie,couldn't think,feel ...and couldn't realize that something wrong is going with me :( Need any advice,help how to fight and find a good experienced doctor in UK ,can't give up ,have a son of 12 who needs his mum, Best Regards and good luck to everyone!
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I am really sorry to hear you are having syuch an awful time. I didn't realise Regents poark was ful lof ticks. I got my lyme disease (and the rest!) in Epping forest.

Well, the bad news is that there is absolutely no doctor who can cure lyme disease in the UK. I've had lyme for 38 years and seen over 100 doctors over the years.

The only place in Europe that can cure you is the Borreliose Centrum Augsburg. You can do a search to get to their website and email them for info. Unfortunately they're private and therefore expensive but they are sadly the only hope. The NHS is totally useless.

Meanwhile, if I were you I would start taking some of the main nutrients you need as this could give you a lto of symptom relief. Go to ILADS . org and download the Burrascano treatment guidelines, there is a section on nutrition there.

Hope this helps, wish I could help more. Sending best wishes.
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Many thanks...Yeah,not only Regents ,my friend was bitten by ticks in the Hyde park.But she is much luckier and more clever...went straight away to GP,private clinics, but they couldn't diagnose Lyme then  she went to Moscow where they diagnosed Lyme straight away...my case is 3 years old..and not that rich to allow myself to go there...
So you are having it for 38 years...Oh,my God...you are really strong person! And how does it come in UK there is no proper Llmd ? And NHS  is useless,my GP is saying I can't prescribe antibiotics while I am waiting the results...but time is going:(
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I guess if you have no money for a private do the best thing is to print the ILADS treatment guidelines to try to "educate" your GP.
I don't know why Uk docs are so ignorant about lyme disease. It's very depressing.
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Tha main thing is to get your GP to realise you now have late stage / disseminated lyme and so it will need more antibiotic treatment than just a month of a single antibiotic .
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there have been some people who posted here in the past who have been treated for Lyme ILADS-style in the UK ... the docs don't advertise that they treat aggressively, but I think they are out there, just quietly.

I just searched on google for

                          lyme disease uk

and among other things, found the following;

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                        www [dot] lymediseaseaction [dot] org [dot] uk/
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There is also
                         www [dot] wadhurst [dot] demon [dot] co [dot] uk / lyme/

which has a page called British Lyme Disease Foundation.
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There are many other links to articles and groups, and it is by looking through those that you may find a knowledgeable MD to diagnose and treat.  
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youvegottobekidding,I am surprised myself why UK docs are so ignorant,Lyme is becoming like epidemic ...There are a lot of people in the parks in summer...so now is not safe even just walking there...It makes me depressed too...I am infected already,but how many people can be infected as well if the docs and government keep ignoring ...Ridiculous! Still waiting for results...that's why can't get even antibiotics...stress ! How do you think about acupuncture ? Can it help??? Thanks
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Hi,Jackie,many thanks for your info...my brain I think stopped working..like paralyzed...still can't realize that I have Lyme...Your links are very helpful,now if my GP can't help me ,will have to find a private..if I can of coz here ...
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All my tests came back negative...My GP thinks it's my imagination...really stressed...and don't know what to do now..even ECG is normal...but I have so hard palpitations...can't stand on my feet properly,hand fingers like frozen..specially in the morning,so sleepy...
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Lyme is not supposed to be diagnosed based solely on test results, because the usual tests (ELISA and Western blot) are known to be inaccurate and insensitive because they do not look for direct evidence of infection ("Look!  Bacteria!") but instead look for your immune system reaction to the infection.  The problem is that Lyme suppresses the immune system so that it is not reacting, and also that Lyme plays a long game, reproducing slowly and outlasting the attention of your immune system, which Mother Nature designed to kill the bacteria quickly and then assume they are all dead, so the immune system goes back to sleep but the Lyme bacteria are still present.  This is true of some other diseases that MDs don't see very often, so they don't think of it:  tuberculosis for one, and Hansen's disease (aka leprosy) for another.

There is much the medical community doesn't understand, and the patients are the ones to suffer.  That is why finding a Lyme specialist is so important.  You can do it!  And I can tell you from personal experience:  it is definitely worth the effort.
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I read somewhere that grapefruit seed extract is very good it even can help with diagnosing Lyme..borrelias come out from their cist while you are taking it. Have you  heard anything about that,Jackie! Many thanks.
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I take GSE as part of my daily vitamins, so I'm familiar with it.  

Given how nasty Lyme is, however, I would not rely on vitamins, herbs etc. as the primary treatment for Lyme and any co-infections -- antibiotics were what I took, and they worked.

I also have read about the cyst formation that Lyme bacteria engage in, and my Lyme doc prescribed two antibiotics at the same time:  one to break open cysts, and the other to kill the bacteria inside.  So it is a recognized approach.

There are good herbals remedies for many things, and I think some here have treated with herbs only, but my personal choice was to bring in the big guns (antibiotics) supported by vitamins etc.  It is important to keep the doc advised of what supplements one is taking, because they can interefere with antibiotics sometimes.  

Even if you decide to go 'all herbal', it takes a doc (imo) to make a full diagnosis of all infections you might have, since each requires separate and different treatment.  Lyme ticks carry these extra infections about half the time, and they create much misery that is often attributed to Lyme -- then sometimes, after the co-infections are treated, it's clear that some of the worst symptoms were from the co-infection itself -- that's what I found.  But everyone is different.  
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Breakspear Hemel Hempstead treat lyme and will use long term abx but it is private and very very expensive I think they ate. Money grabbers.... They are my only hope at the moment though.
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I've heard about them...very..expensive exactly,read reviews..3500-4000 pounds only for tests and consultation...But I think I will have to go with them no choice!!! Hope they are worth! Shame for UK...
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i found maps that showed it all over europe..the world

http://lymediseaseguide.org/tick-species

http://en.wikipedia.org/wiki/File:Geographical_distribution_of_reported_Lyme_Disease_cases.png

http://liveonearth.livejournal.com/566935.html


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I have no idea why, but many other countries decided to just use the CDC two tier testing protocol for Lyme Disease.

Unfortunately, this protocol was developed for surveillance purposes (taking a sample count to watch trends), giving a bare minimum of false positives without regard to false negatives.  A few years later, it was adopted, amid much criticism, as a diagnostic test.  No additional testing was done to determine the odds of a false negative. Nor was any additional evaluation done with genetic variations in other geographic regions or countries.

The decision on which bands to consider and how many were needed to be present to indicate Lyme was done by statistical analysis of blood samples from Lyme patients in New England. The vast majority of these patients were rheumatic (not neurologic) patients and in the early stage of the disease.  Even labs that perform testing have figured out that late stage patients' test results look different than early stage patients.

They took their blood four times. For the statistical analysis, they only cared if the patient met the new criteria at least once.  Which means that a known Lyme patient could have tested "negative" 3 times out of 4.  They KNEW that the antibodies and test results change over time, and yet they completely failed to tell doctors that Lyme patients can be false negative. They didn't even recommend repeat testing for suspected cases, which was clearly indicated.  

I got my Lyme in Australia, and I tested false negative, along with the vast majority of Aussie Lyme patients. Lyme in Oz looks more like the European presentation than the North American presentation.

I am convinced I wasn't CDC positive because different genetic variations in different immune systems results in different combinations of antibodies. The CDC testing never considered ANY of these variables. Some estimates by docs who treat a lot of Lyme are that it misses HALF of cases here in the U.S.  I would guess it misses far more than that elsewhere in the world.

If UK doctors were taught nothing about the disease, and to only prescribe a short course of abx when a patient tests CDC positive, it is no wonder they have no experience with the disease. Hardly anyone ever tests positive.  They must think it is extremely rare.  

What do they think of all the miserable, undiagnosable patients that they don't know what to do with?  When will someone in the IDSA or the Health Service connect the dots?  Perhaps only after someone very famous and/or influential gets a bad case of it.

(Much of the info I conveyed on testing is from Pamela Weintraub's book "Cure Unknown." She is an experienced science writer and editor whose whole family got Lyme Disease. It is a very well researched book.  I would be very curious to know what response the CDC would give to an inquiry about whether their two tier testing protocol has ever been validated/studied with other genetic strains or species of Borellia.)
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Hey just to let you know a new clinic has opened in the uk .. It's in hull called the 'well one clinic' google it and see what you think I am going to quit using breakspear and try here ... It's about 4 hour drive from me . I spoke with the doc who said she is trying to treat chronic lyme with rife machines but tht some patients she is pulsing herbals and antibiotics ... I'm not interested in the rife machine tbh but she said to make an appointment
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Why are you "not interested in the rife machine"?
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http://www.drweil.com/drw/u/QAA401104/Ready-for-Rife.html
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