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!
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....
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 ...
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!
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.
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:(
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.
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;
www [dot] lymediseaseaction [dot] org [dot] uk/
There is also
www [dot] wadhurst [dot] demon [dot] co [dot] uk / lyme/
which has a page called British Lyme Disease Foundation.
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.
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
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 ...
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...
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.
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.
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.
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...
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.)
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
PLEASE DONT LOOSE HEART There is 3 options i give you for help in uk
1/ wellone lymes clinic england A lovely retired nhs gp called Dr beynon she treats lymes ppatients and you do not even need to have positve testing. Her costs are minium as shes not running as a buisness but just wants to help AS her hands were tied as a gp Google her online She was at a meeting in house of commons on 19th january With few other doctors and few mps LDA TRYING TO MAKE CHANGES IT WAS A LYMES PATIENT AND GP AND HIS LOCAL MP GOT THIS MEETING
She pulses on Flagl add in other abx as time goes on she also uses rife machine She has drop in clinic And i beleive in 2 places in england One is beverly. I live in scotland she skypes with me and posts the pills in a package to me.Total costs including postage is £16 month Skype is only first time was £65.00 for half hour.She talks on phone each month at no cost after first apointmt You would havve to go see her if you do not have a blood test positve. Then she diagnose you onj clinical basis
2/ breakspear lymes clinic england this one can be costly
3/ go on to us website ILADS email asking for a list of ilads doctors in the uk they did have a few. It in my old ;laptop broke or id give names cant remeber.
4/ oh lymesdisease.org hold list of doctors in uk that treat private lymes patients. there is revieews from patients on here of them
THere option of cowdens plan from nutramedix see about this plan on ilads website gooigle drcowden and listen to videos of this lymes treatment It is expensive at full cost is £225-258 each month however if you are to sick to work You can go on to nutramedix.cxom website email customer services Ask for a Aplication form for cowdens financial assistance help form. Get your gp to sign it Youl received discount total cost is 120euros every montyh less than half full cost .yOU RUN IT FOR UP TO 6-9 MONTHS
OR DR BUHNERS PLAN. using herbs to treat lymes this is vwery sussesfull in us lymes people use this GOOGLE HEALINGWELL.COM brilland site for lymes chat forum THere people cured and had it 30 years PLEASE DONT GIVE UP EXAUST ALL PRIVATE ROUTE AT COST YOU CAN AFFORD ThE OTHER PERSON HERE RIGHT THE NHS WILL NOT TREAT issue longterm treatment thats needed when lymes is chronic iv had 4 hspital nhs concultants refuse to treat my private coinfections from ticks. Hope some of above helps My sons 16 and hes keeps my mood up i lie on sofa under quilt shivering chills And he plays guitar ,akes me laugh Im looking forward as hers doing highers until 18 So my focus is on him. Dont get depressed look to your son for stength to carry on he needs you x
sorry you are suffering i now how you feel as a mum i battled this ilnnes developing at same time my son was diagnosed as type 1 diabetes. I had to do his insulin injections for few years Until he was at age to learn to do them himself.he was 8 hes now 16 I really feel for you as i to beat myself up with guilt as my body was getting so weak i couldnt take him to baths or do activities I was losing my mobility and suffered a overwhelming weakness sinking througgh floor Also severe brain fatige Would lie with curtains shut dont tolerate light When son was at school It was a horrible time Please keep in your mind as your son gets bit older it will take the prssure off of you Hel be old enougfh to understand mum needs to rest lot Also its not long until he is 16 .I have my husband im gratefull for that In had lymes and coinfections 19 years My lymes could have been treated, I had the bulleye rash and flue like onset Gps asked did i see a tick as i did not it went untreated, A illness developed. I ran lymes test in 2007 at gps told negative THe ran another 2 by nhs infectious disease concultants. told negative was given a me diagnosis. However few year later a neurologist went digging back years of blood tests and testing she called my mobilit to sy i was given wrong results years before i had 3 Western blott positves for borrelia Ib been batted around hospital ology depts many scans mris to brain ct long list My heart if affected. Im wheelchair bound severe muscle weakness in arms legs Im at stage in this at age of 48 i have aids in batthroom ot putting wash dry me loo in I have shower aids and toilet aids A\ll hoisehold taks done for me all cooking help with personal care. elaine xx
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