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My battle to make the NHS pay out for my treatment (From Gazette)
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My battle to make the NHS pay out for my treatment
1:18pm Wednesday 6th May 2009
A WOMAN claims she could end up forking out £50,000 on treatment for a rare disease if the NHS refuses to fund it.
Ria Heslop, 43, has been battling NHS North East Essex for more than two years, in an effort to get it to pay for medication she needs to treat lyme disease.
Mrs Heslop contracted the neurological condition after being bitten by a tick in 1999, but was not diagnosed until 2006.
She visited her GP and has seen several specialists over the years, reporting flu-like symptoms and migraines.
Mrs Heslop of Fordham Heath, Colchester, said: “I was showing neurological symptoms. My muscles were jumping and I just couldn’t get out of bed.
“I thought I was dying. The doctor sent me to a multiple sclerosis specialist and after that, it was one specialist after another.”
In 2006, Mrs Heslop visited a diagnostic specialist in the USA, who finally diagnose neurological Lyme Disease.
Back home, Colchester Primary Care Trust, which at that stage was responsible for her care, initially funded her treatment, but then withdrew it.
Since then, Mrs Heslop has been fighting to to get her treatment and in the meantime is paying for it herself.
She estimates the cost could be as much as £50,000 but she and husband, Dennis, say they would be happy if NHS North East Essex paid for the drugs she needs to treat the condition.
She said: “It has been very difficult and we have been struggling to afford the trips to the USA.
“It’s so sad, because when I was working, I was paying money into the NHS. You never think that it won’t be there to help you.
“I want my life back more than anything, but I think it’s unfair that I have to fight the NHS, as well as the disease.”
TRUST SAYS IT WANTS TO HELP
Mike Cable, assistant director of corporate services for NHS North East Essex, declined to comment on the case in detail.
He said: “This is a complex issue which is at a delicate stage. We are in continuing contact with Mrs Heslop in an effort to resolve the situation. However, we do need Mrs Heslop’s help to enable us to help her.”
He added the trust had asked “on a number of occasions” for diagnosis and treatment data from the USA.
“Without this, we are not allowed, for clinical safety and legal reasons, to pay for the treatment she is requesting,” he added.
“Mrs Heslop has so far declined to provide us with this information.
“We are keen and willing to offer Mrs Heslop every assistance possible, but we can’t do so unless she either agrees to release the information from the USA or agrees to see a consultant in the UK.”
However, Mrs Heslop showed the Gazette letters which says she sent the trust, giving them permission to view her medical records.
She said: “We have sent them letters repeatedly confirming my diagnosis, including letters from my consultant.
“They keep saying they want results of my blood tests but they have had them numerous times.”
LYME DISEASE FACTS
- Lyme disease is caused by bacteria transmitted to humans via the bite of an infected tick
- Seven to ten days after an infected tick’s bite, the first stage of Lyme disease begins with flu-like symptoms such as fever, chills, swollen lymph nodes, headaches, fatigue, muscle aches and joint pain
- Neurological complications most often occur in the second stage of Lyme disease
- These include numbness, pain, weakness, visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headaches
- Weeks, months, or years after a tick bite, other problems, such as difficulty with concentration, irritability, memory and sleep disorders and nerve damage can occur.
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Your Say YourColchester
Red Tape, Colchester says...
2:10pm Wed 6 May 09
This is so frightening and could happen to anyone through no fault of their own. It seems the NHS is great when they get things right, but when they get things wrong they really mess-up big time. And then rather than admit to being in the wrong they seem to throw their toys out of the pram and refuse to accept it and just add insult to injury by withdrawing the support they were giving. Hopefully someone at the trust in authority will step in and sort this mess out.
denny, Colchester says...
2:33pm Wed 6 May 09
So sorry to read of all that Ria has been through. I was diagnosed with Lyme disease two years ago but thankfully I was treated quickly and I'm fine now. I do a lot of walking and am now vigilant about ticks. I had a great deal of support from BADA UK http://www.bada-uk.o
rg (a registered charity regarding tick diseases) and they have leaflets and a really informative website which gives information about how to avoid being bitten and what to look out for. I am hearing of more and more people with this disease. I don't think it's as 'rare' as described.
rg (a registered charity regarding tick diseases) and they have leaflets and a really informative website which gives information about how to avoid being bitten and what to look out for. I am hearing of more and more people with this disease. I don't think it's as 'rare' as described.
frogladd, colchester says...
2:51pm Wed 6 May 09
Hi
I am also in Colchester and have chronic lyme disease-so its not so rare!
So great to have some publicitity about this terrible disease.
Like Ria I am forced to pay for my own treatment. I was diagnosed by the NHS with ME 3 years ago. Once this diagnosis was made, there was no further search for what may be causing my symptoms.
I was sent to the ME clinic that only provides coping strategies. realising I was getting no better, I went private . I have now been on anbx for 14 month, and am about 70% better.
I would urge every one to keep searching for the source of their illnesses, healthy people dont just get sick!
I am also in Colchester and have chronic lyme disease-so its not so rare!
So great to have some publicitity about this terrible disease.
Like Ria I am forced to pay for my own treatment. I was diagnosed by the NHS with ME 3 years ago. Once this diagnosis was made, there was no further search for what may be causing my symptoms.
I was sent to the ME clinic that only provides coping strategies. realising I was getting no better, I went private . I have now been on anbx for 14 month, and am about 70% better.
I would urge every one to keep searching for the source of their illnesses, healthy people dont just get sick!
domzig, manchester says...
2:52pm Wed 6 May 09
sadly the above scenario seems quite common with this illness. My daughter has lyme disease and we are also having to fund the treatment. Before we finally got a diagnosis we were also given multiple possibilities including being told she needs a psychiatrist there is nothing wrong!!!
Lyme disease is not rare and its becoming more endemic in certain areas due to change in weather climates etc etc.
The NHS need to get there act together and realise that many many people are suffering and having to pay, if this was someone with cancer it would never happen so why is it being allowed to happen with lyme patients!
Bada are fantastic and were/are of great support to myself and danielle. so i would urge everyone to make themselves aware of the illness and how to remove tics etc as to treat early is so easy and to treat late is an unecessary evil.
Lyme disease is not rare and its becoming more endemic in certain areas due to change in weather climates etc etc.
The NHS need to get there act together and realise that many many people are suffering and having to pay, if this was someone with cancer it would never happen so why is it being allowed to happen with lyme patients!
Bada are fantastic and were/are of great support to myself and danielle. so i would urge everyone to make themselves aware of the illness and how to remove tics etc as to treat early is so easy and to treat late is an unecessary evil.
sfwoodcock, Falmouth says...
3:01pm Wed 6 May 09
The UK charity Lyme Disease Action is very aware that there are many people throughout the UK in a similar situation to Mrs Heslop. Over the past two years we have been contacted by over 700 people all asking very similar, basic questions about the provision, or lack of it, for Lyme disease cases in the UK. This number is only the tip of the iceberg of people chasing answers to their questions about Lyme. We suspect many thousands of people in the UK may be in the same boat. We hear from people who have a range of very debilitating symptoms, often they do remember a tick bite incident, but the medical response to this situation in many parts of the country appears ill-prepared to accurately advise such patients. When people cannot find any answers they are driven into the arms of private providers in order to obtain diagnosis and treatment. Desperate patients are then in the position of having to pay to have their infection treated. Something that started as a simple infection turns into an expensive health nightmare.
This charity has asked the Department of Health to put into place national Clinical Guidelines for doctors, to enable GPs to recognise and treat Lyme disease without delay. We have asked that this be treated as a matter of urgency. Indeed, we placed a motion in Parliament and a Number Ten petition asking for these Guidelines to be brought into being. Over 2000 signatures resulted when the petition closed and this number of signatures would normally result in a government response being given. We are still awaiting a response from Number 10 several weeks later which is very unusual. The problem is not just going to go away and must be tackled by government as a matter of urgency. Many thanks to Ria Heslop and the Gazette for highlighting this ever-growing problem. We do hope Ria will succeed in getting the treatment she needs.
Stephanie Woodcock
Lyme Disease Action
This charity has asked the Department of Health to put into place national Clinical Guidelines for doctors, to enable GPs to recognise and treat Lyme disease without delay. We have asked that this be treated as a matter of urgency. Indeed, we placed a motion in Parliament and a Number Ten petition asking for these Guidelines to be brought into being. Over 2000 signatures resulted when the petition closed and this number of signatures would normally result in a government response being given. We are still awaiting a response from Number 10 several weeks later which is very unusual. The problem is not just going to go away and must be tackled by government as a matter of urgency. Many thanks to Ria Heslop and the Gazette for highlighting this ever-growing problem. We do hope Ria will succeed in getting the treatment she needs.
Stephanie Woodcock
Lyme Disease Action
Jaydee97, Ipswich says...
4:02pm Wed 6 May 09
I'm from just a few miles up the road and I also have Lyme Disease, though am no longer debilitated by it after private treatment. Thank you for publishing this story, the more local (well and national!) GPs and medical staff realise that this is not a rare disease, the less likely that people will present with classic symptoms, like I did, and not be correctly diagnosed. It is often misdiagnosed as CFS/ME, fibromyalgia, etc. These conditions are such that a 'cure' is not really searched for and the patients are encouraged to manage their symptoms. It took ME 3 years to find out what was wrong with me.
The very sad case of Prof Crockett a few years ago should have rung alarm bells.
I wish this lady the very best of luck. In a few years time I think the mainstream medical establishment will look back and be horrified at the apparent ignorance. Keep spreading the word.
The very sad case of Prof Crockett a few years ago should have rung alarm bells.
I wish this lady the very best of luck. In a few years time I think the mainstream medical establishment will look back and be horrified at the apparent ignorance. Keep spreading the word.
Jaydee97, Ipswich says...
4:10pm Wed 6 May 09
Sorry for adding another comment, but I just wanted to say that foot drop appears to be a very common first symptom of Lyme. If I (and the specialists that I saw) had known that, things would presumably have been very different for me.
niallmc, says...
4:11pm Wed 6 May 09
hi my name is niall and i have lyme disease too.this disease needs to be taken seriously,and its everywhere,not rare loike some doctors seem to think.i am struggling to get help to and i'm in ireland. ria needs compassion,and above all,TREATMENT.hopefu
lly this story will bring some well earned publicity to this awefull disease.
niall, ireland
lly this story will bring some well earned publicity to this awefull disease.
niall, ireland
sleepybird, Norfolk says...
4:52pm Wed 6 May 09
I also have Chronic Lyme Disease as well as 3 other tick borne infections.
I was misdiagnosed for 4 years with ME (Chronic Fatigue Syndrome)before reading about Lyme Disease online and being tested privately for it.
The disease is absolutely horrendous and is made much worse by the fact that people just don't recognise it, I still can't get DLA even though I need help to walk and am confined to my bed most of the time.
As Ria said, if this disease is caught early, it can be cured in just a few weeks but in my experience, I have found that most Doctors don't realise that you can catch Lyme in the UK or that it even exists!!
I too am having to spend tens of thousands of pounds in order to treat myself and at last I am starting to see an improvement.
The PCT hasn't been helpful at all, except for my Doctor who admits that its out of his hands.
This terrible illness and those who suffer with it, need recognition desperately.
The situation is only going to get worse if people remain clueless about what it happening here and worldwide.
I was misdiagnosed for 4 years with ME (Chronic Fatigue Syndrome)before reading about Lyme Disease online and being tested privately for it.
The disease is absolutely horrendous and is made much worse by the fact that people just don't recognise it, I still can't get DLA even though I need help to walk and am confined to my bed most of the time.
As Ria said, if this disease is caught early, it can be cured in just a few weeks but in my experience, I have found that most Doctors don't realise that you can catch Lyme in the UK or that it even exists!!
I too am having to spend tens of thousands of pounds in order to treat myself and at last I am starting to see an improvement.
The PCT hasn't been helpful at all, except for my Doctor who admits that its out of his hands.
This terrible illness and those who suffer with it, need recognition desperately.
The situation is only going to get worse if people remain clueless about what it happening here and worldwide.
Paul F, Danbury says...
6:26pm Wed 6 May 09
I have known Ria all through her illness and find it quite unacceptable that she has been treated in such a cavalier way. Lymes Disease is a much more prevalent now than ever before. The Forestry Commission warn of the dangers in their forests in East Anglia. It is now time that the NHS recognised what a debilitating serious disease this is. The effects it has on the individual is beyond belief and Ria has suffered relentlessly dring the past 10 years. It is time for the NHS to wake up and support people with this debilitating disease at an early stage, but it seems that there are few specialists in the UK that are able to positively treat the disease. Surely it is time to rectify this shortfall as it will be cheaper in the longer term to treat at the outset, than it will at the later stages when full nursing care would be required.
Paul F, Danbury says...
6:26pm Wed 6 May 09
I have known Ria all through her illness and find it quite unacceptable that she has been treated in such a cavalier way. Lymes Disease is a much more prevalent now than ever before. The Forestry Commission warn of the dangers in their forests in East Anglia. It is now time that the NHS recognised what a debilitating serious disease this is. The effects it has on the individual is beyond belief and Ria has suffered relentlessly dring the past 10 years. It is time for the NHS to wake up and support people with this debilitating disease at an early stage, but it seems that there are few specialists in the UK that are able to positively treat the disease. Surely it is time to rectify this shortfall as it will be cheaper in the longer term to treat at the outset, than it will at the later stages when full nursing care would be required.
Paul F, Danbury says...
6:27pm Wed 6 May 09
I have known Ria all through her illness and find it quite unacceptable that she has been treated in such a cavalier way. Lymes Disease is a much more prevalent now than ever before. The Forestry Commission warn of the dangers in their forests in East Anglia. It is now time that the NHS recognised what a debilitating serious disease this is. The effects it has on the individual is beyond belief and Ria has suffered relentlessly dring the past 10 years. It is time for the NHS to wake up and support people with this debilitating disease at an early stage, but it seems that there are few specialists in the UK that are able to positively treat the disease. Surely it is time to rectify this shortfall as it will be cheaper in the longer term to treat at the outset, than it will at the later stages when full nursing care would be required.
lorraine u, hemelhempstead says...
6:44pm Wed 6 May 09
The politicians should get involved in insisting that the NHS treat people with lyme. Doctors need to feel they have government backing and clear guidelines when treating a serious long term illness like this. Lyme is spreading, destroying many lives. It could be any of us in Ria's shoes. Lets back each other and make the MP's do something.
Wingfingers, Herne Bay, Kent says...
6:50pm Wed 6 May 09
What's "complex" about this "issue"? It's very simple - Ria has Lyme Disease which needs proper treatment. It will cost more now than it would have if it were diagnosed on clinical grounds by her GP in the first place (blood tests can't be relied on in early stages if negative), but the NHS has a moral and ethical duty and responsibility to treat her. She has paid into the National Insurance all her life and has therefore a notional "contract" with the NI scheme and its subsidiary the NHS for them to provide proper treatment - if they fail to do so they are guilty of breach of contract, at least morally if not legally.
As a retired vet I feel qualified to mention that Lyme Disease is being diagnosed more and more frequently these days. You don't have to live near deer. It's carried by ticks found on sheep, birds and other animals like hedgehogs, as well as other biting insects, and can even transmit from an infected pregnant woman to her baby. The main prevention is to avoid being bitten by a tick, but if you are, you must remove the tick immediately. The main bacterium, Borrelia, may take a few hours to get into the tick's mouthparts, but there are several other organisms which can transmit sooner and can be nasty, even fatal, in themselves, like Babesia and Bartonella.
As a retired vet I feel qualified to mention that Lyme Disease is being diagnosed more and more frequently these days. You don't have to live near deer. It's carried by ticks found on sheep, birds and other animals like hedgehogs, as well as other biting insects, and can even transmit from an infected pregnant woman to her baby. The main prevention is to avoid being bitten by a tick, but if you are, you must remove the tick immediately. The main bacterium, Borrelia, may take a few hours to get into the tick's mouthparts, but there are several other organisms which can transmit sooner and can be nasty, even fatal, in themselves, like Babesia and Bartonella.
Wasgymgirl, BLACKPOOL says...
7:02pm Wed 6 May 09
I too have neurological lyme disease and also from the UK
Fought for 5 years to get a diagnosis and slowly deteriorated until bed bound.
Finally after 5 years, now into 6th had to travel 5 hours to see one of our 3 doctors for a diagnosis of lyme and co infections.
Now stuggling to raise funds to get to USA where at least they get people into remission.
But who from many walks of life has a bottomless pit of money to throw at the treatment.
We have to fight every step of the way without a end in sight, health wise or money wise.
This disease is a curse from hell and the world and its BIG BROTHERS need to wake up.
Lyme does not only affect your health, wealth but everything about your life leaving you a shell of your former self, often feeling .like your living your life through a third person as nothing seems real.
Doctors look at you as if your mad and treat you with utter contempt
We have no support only each other, who are often too ill ourselves to help.
Lyme is a ticking time bomb and the sooner it explodes in the faces of the IDSA the better for all, diagnosed and undiagnosed.
Its a living hell, a cruel and very lonely disease. which no one unless suffering can grasp.
Its ruined my life, a avid gym goer, now lifeless having seizures, horrendous headaches, heart problems etc etc, the list is all too long to type.
3 doctors in the whole of the UK who don't diss us and can treat, its unbelievable Steven King could not of wrote a horror like it..
Make no mistake lyme can devastate yours and you family's life beyond comprehension.
Well done Ria! i too have been in our local gazette and since found 1 more cases very close to me, a seaside town!
Fought for 5 years to get a diagnosis and slowly deteriorated until bed bound.
Finally after 5 years, now into 6th had to travel 5 hours to see one of our 3 doctors for a diagnosis of lyme and co infections.
Now stuggling to raise funds to get to USA where at least they get people into remission.
But who from many walks of life has a bottomless pit of money to throw at the treatment.
We have to fight every step of the way without a end in sight, health wise or money wise.
This disease is a curse from hell and the world and its BIG BROTHERS need to wake up.
Lyme does not only affect your health, wealth but everything about your life leaving you a shell of your former self, often feeling .like your living your life through a third person as nothing seems real.
Doctors look at you as if your mad and treat you with utter contempt
We have no support only each other, who are often too ill ourselves to help.
Lyme is a ticking time bomb and the sooner it explodes in the faces of the IDSA the better for all, diagnosed and undiagnosed.
Its a living hell, a cruel and very lonely disease. which no one unless suffering can grasp.
Its ruined my life, a avid gym goer, now lifeless having seizures, horrendous headaches, heart problems etc etc, the list is all too long to type.
3 doctors in the whole of the UK who don't diss us and can treat, its unbelievable Steven King could not of wrote a horror like it..
Make no mistake lyme can devastate yours and you family's life beyond comprehension.
Well done Ria! i too have been in our local gazette and since found 1 more cases very close to me, a seaside town!
Jennifer42, Essex says...
7:09pm Wed 6 May 09
I also live in the Essex area and have Chronic Lyme Disease.I have been ill for 13 years now and have had various diagnoses over the years from the NHS.The main one being settled on as Chronic Fatigue Syndrome until I started getting worse mobility wise and started having nerve problems.I have now been told Chronic Fatigue with various medical unexplained symptoms.Finally I have been diagnosed privately with Lyme Disease but already have extensive nerve damage and am pretty much bedridden and have to use a wheelchair on the rare occasions I go out.I live in constant pain.I am also funding my own treatment having IV antibiotics and the cost has already ran into many thousands.Many thousands I can't actually afford.
The NHS still won't accept I have Lyme Disease but haven't offered me any other different or real diagnosis.
It makes me so angry when I think my life might not have been ruined if I had got diagnosed early and properly and then when I finally find the real cause I have to fund it all myself.
Well done Ria for finding the courage and the energy to do this article.
The NHS still won't accept I have Lyme Disease but haven't offered me any other different or real diagnosis.
It makes me so angry when I think my life might not have been ruined if I had got diagnosed early and properly and then when I finally find the real cause I have to fund it all myself.
Well done Ria for finding the courage and the energy to do this article.
zuzu, Washington DC USA says...
7:23pm Wed 6 May 09
Ria's story is all too common for Lyme sufferers in the UK and abroad. Even with early treatment , complications can persist . Proper treatment early and ongoing is not only necessary but should be the right of every tax-paying citizen .It is unconscionable that able-bodied men, women and children must not only suffer the ravages of this disease but are made to pay out of pocket for it , too. There must be an acknowledgment of the need for care and welfare of our citizens. It is pure insanity to allow people to go on being ill when they could be receiving treatment without threat of losing their homes and life's savings.
ticktalkireland, Galway, Ireland says...
8:09pm Wed 6 May 09
We have recently started a new group on facebook called Tick Talk Ireland. The overwhelming response from sufferers on this group is that there's little knowledge or support of the disease within the medical system. I believe that it is vital that Lyme disease is made notifiable and that health professionals are made more aware of its myriad of symptoms during the many stages of the disease. Too many patients are being told they have ME an untreatable illness which allows the Lyme bacteria to multiply into a chronic form. At this stage it is much harder and more costly to eliminate and affects countless people's lives. I wish all Lyme disease sufferers the very best in their recovery.
casstan, Basildon says...
8:21pm Wed 6 May 09
I would like to say how brave of Ria to go public with this and what an inspiration to all Lyme patients who are going through the same. I developed a rash on my lower leg this time last year and because I knew Ria she said it looked like I had been bitten by a tick. I went to my doctor with this informtion who poo pood what I told him and said I had an allergic reaction. After several visits back and seeing another two doctors who came up with fungal skin, and more creams - time span was running out as there is only a six week window to be able to take the antibiotics. I was in a panic to get the proper treatment so went to the only private clinic and doctor who treats Lyme in Hemel Hempstead - also a photo of my rash was sent to the USA. Both confirmed that it was a rash from a tick bite. I went back to my doctor and insisted I wanted a blood test for Lyme which was given and guess what - it came back positive. He gave me the TWO WEEKS ANTIBIOTICS that follows the NHS guidelines. My private doctor prescribed a different protocol of medication which I took to the NHS doctor - I took these for three months. Fortunately my symptoms went and hopefully will not return. My POINT IS: If I had only taken the NHS doctors advice I would probably have ended up like Ria or the poor other Lyme patients who have posted their comments.
I might add that before the rash appeared I did have flu like symptoms and diaorrhea - also my knees kept giving way. When I asked my NHS doctor what should I do if the symptoms come back - he said YOU WILL HAVE TO LIVE WITH IT!
Let's hope the NHS will be better informed with regard to Lyme Disease in the future.
I might add that before the rash appeared I did have flu like symptoms and diaorrhea - also my knees kept giving way. When I asked my NHS doctor what should I do if the symptoms come back - he said YOU WILL HAVE TO LIVE WITH IT!
Let's hope the NHS will be better informed with regard to Lyme Disease in the future.
casstan, Basildon says...
8:34pm Wed 6 May 09
I would like to add to my previous comment that there is an appeal website for Ria. Please look at this to see how she is doing and the latest news. www.lymeappeal.org
uist, Aldenham says...
8:39pm Wed 6 May 09
I too have long-running neurological Lyme Disease, not diagnosed/ misdiagnosed by the NHS for years. I finally became so ill in 2007 that I could no longer work. Like so many others, I was told I had CFS, but I eventually suspected Lyme. I found a private Lyme specialist who confirmed my suspicions, and I'm finally getting the right treatment. Despite being too ill to work, I've had to pay for all the consultations and treatment myself. I've contributed to the NHS via National Insurance for over 30 years, and I wonder why I'm paying all over again. Lyme has completely derailed my life, and I don't understand why so many people with Lyme continue to be so badly let down by the NHS. Had my infections been properly diagnosed years ago a short course of antibiotics would have got rid of them, but because of the neurological damage they have caused I now face an uncertain future. Many thanks to Ria and to The Gazette for this article.
sheeptick13, Reydon says...
8:54pm Wed 6 May 09
Next month will be the 24th anniversary of my tick bites, on mid summer's day 1985. 3 weeks later I began to suffer head and neck pains and sudden weakness in the ankles and wrists and also a whole change in my personality. I was eventually labelled as having Post viral Fatigue syndrome, especially when the blood tests for Lyme came back negative. It was 19 years before a knowledgable doctor could tell me I had the spirochaetes in my blood as well as other infections from the tick bites. During that 19 years I lost everything, my marriage, my home, my career and all of my social contacts. The pain has been so constant and sometimes so sharp that I look on my life as mere survival, and sometimes wonder why I bother to stay alive. There is something really strange going on with Lyme, as if the doctors don't want to know. It's ok if they suspect it early on and treat you straight away, but after that when the disease has set in, the tests are not sensitive enough and they turn you away and say it's all in your head, or it's ME/CFS or fibromyalgia. In some cases I've heard of people being told they have depression and bipolar disease.
The trouble is that our NHS follows the American guidelines, and they are now under review. It should astonish everyone when they realise that a whole Infectious Disease panel in the USA has had to be reconvened to make new guidelines. It has been said that the doctors involved had "conflicts of interest" in the patents behind the test kits and vested interests in insurance companies who cannot afford to underwrite the expensive intravenous antibiotic treatment and the care that each patient really needs. Who knows? All I know is that I have to buy my own Lyme medicines when I can afford them and my GP refuses to believe that I have ever had Lyme. Which is funny, because he did believe me at first, especially when he saw the photos of the long curly bacteria called spirochaetes which are in my blood. I believe our NHS has not realised that this disease was there since the 1970s and they have now got a problem with the backlog of patients. So they are pretending it will all go away, and letting us suffer. If only they knew just how bad this illness makes you feel, they would have more compassion and train our doctors up to the standard of the ILADS group www.ilads.org
who are the International Lyme and Associated Diseases Society. I am so glad you did this story; the more people who know about this and take care to avoid ticks, the better. Thanks to you at the Gazette some people's lives may well be saved this year from being ruined.
The trouble is that our NHS follows the American guidelines, and they are now under review. It should astonish everyone when they realise that a whole Infectious Disease panel in the USA has had to be reconvened to make new guidelines. It has been said that the doctors involved had "conflicts of interest" in the patents behind the test kits and vested interests in insurance companies who cannot afford to underwrite the expensive intravenous antibiotic treatment and the care that each patient really needs. Who knows? All I know is that I have to buy my own Lyme medicines when I can afford them and my GP refuses to believe that I have ever had Lyme. Which is funny, because he did believe me at first, especially when he saw the photos of the long curly bacteria called spirochaetes which are in my blood. I believe our NHS has not realised that this disease was there since the 1970s and they have now got a problem with the backlog of patients. So they are pretending it will all go away, and letting us suffer. If only they knew just how bad this illness makes you feel, they would have more compassion and train our doctors up to the standard of the ILADS group www.ilads.org
who are the International Lyme and Associated Diseases Society. I am so glad you did this story; the more people who know about this and take care to avoid ticks, the better. Thanks to you at the Gazette some people's lives may well be saved this year from being ruined.
REDSONIC, Coggeshall says...
8:55pm Wed 6 May 09
Ria, keep fighting for what is your entitlement! Go girl, go!
TICKaware, Somerset says...
9:15pm Wed 6 May 09
Ria, I wish you luck with this battle. I was misdiagnosed with MS for 10 years before a Lyme savvy doctor rediagnosed my neurological symptoms and gave me the antibiotic treatment required. He followed US treatment protocols recommended by Prof. Sam Donta. Some of the cheapest antibiotics available removed 10 years worth of symptoms within weeks. A couple of top-up treatments over the past 6 years have kept the symptoms away. I don't think Lyme is a rare disease at all - it is just unrecognised in many cases. The NHS should seek to use treatment protocols that have been found to work, rather than the half hearted attempts that are clearly failing. This sounds like the syphillis saga all over again.
Don't give up Ria.
Don't give up Ria.
sheeptick13, Reydon says...
9:19pm Wed 6 May 09
Forgot to thank you Ria!
Good on you for managing to take this to the papers even though you are so ill.
All the best and good luck - we all have to keep on trying to find the best treatment and to consider all of the possible co-infections that could be transmitted at the same time as the Lyme bacteria.
XXX
Good on you for managing to take this to the papers even though you are so ill.
All the best and good luck - we all have to keep on trying to find the best treatment and to consider all of the possible co-infections that could be transmitted at the same time as the Lyme bacteria.
XXX
micul, USA says...
9:23pm Wed 6 May 09
Thanks to the paper for bringing this issue out in the open! We have the same problem here in the states with Lyme and its co-infections. Even people with insurance end up spending 10 to 50 thousand dollars (or more) out of pocket for treatments and drugs. The Center for Disease Control (CDC) doesn't want to acknowledge that there is even a problem, inspite of the thousands of new cases each year.
Babesiosis in the U.S. doesn't even exist in their eyes because they believe that it is a self limiting infection in humans....dream on Feds and IDSA! This is going to come back to haunt them some day because of trying to sweep it under the table!
Babesiosis in the U.S. doesn't even exist in their eyes because they believe that it is a self limiting infection in humans....dream on Feds and IDSA! This is going to come back to haunt them some day because of trying to sweep it under the table!
Wasgymgirl, BLACKPOOL says...
9:28pm Wed 6 May 09
Sorry that was 12 in Blackpool not 1...dyslexia come with lyme!
WAKE UP WORLD and the pen pushers at the top
WAKE UP WORLD and the pen pushers at the top
KC Essex, Colchester says...
9:47pm Wed 6 May 09
I live in Colchester and was recently diagnosed privately with Chronic Lyme Disease.
I borrowed money to pay for the initial consultation and now go without the most basic things to buy my own oral antibiotics and save for my next consultation.
Alan12345, Hull says...
7:26am Thu 7 May 09
Firstly, I wish Ria a speedy recovery from this terrible illness.
Secondly,I do hope that Mr Mike Cummins and indeed all of his health care associates, (I'm sure they know who they are), stop their blatent blocking tactics and seeming willful avoidance of their responsibilities to Ria and just get on and help and support her. It may just help them in not holding their heads quite so low in shame when their activities and prejudices are honestly and unbiasly exposed.
Alan
Secondly,I do hope that Mr Mike Cummins and indeed all of his health care associates, (I'm sure they know who they are), stop their blatent blocking tactics and seeming willful avoidance of their responsibilities to Ria and just get on and help and support her. It may just help them in not holding their heads quite so low in shame when their activities and prejudices are honestly and unbiasly exposed.
Alan
jane_colley, Stratford says...
7:40am Thu 7 May 09
In Scotland Lyme Disease is notifiable. This is because it is a serious bacterial infection. Why is it not so in England?
A couple of years ago a woman went on hunger strike to force the Hinckley & Bosworth PCT to give her treatment for Lyme Disease. Why are PCT's not taking this illness seriously?
My own daughter was misdiagnosed for 10 years. Her treatment cost us £30,000. At 20 she is now fully well and leading a normal life. Proper treatment for this illness is available, but most of the time it is the patients themselves who are funding this.
All they have done wrong is to have the misfortune to come into contact with an infected tick. This illness is not self inflicted. The reluctance to help people who are ill with this, particularly children, is a cause for shame.
A couple of years ago a woman went on hunger strike to force the Hinckley & Bosworth PCT to give her treatment for Lyme Disease. Why are PCT's not taking this illness seriously?
My own daughter was misdiagnosed for 10 years. Her treatment cost us £30,000. At 20 she is now fully well and leading a normal life. Proper treatment for this illness is available, but most of the time it is the patients themselves who are funding this.
All they have done wrong is to have the misfortune to come into contact with an infected tick. This illness is not self inflicted. The reluctance to help people who are ill with this, particularly children, is a cause for shame.
Allotmenteer, Oxfordshire says...
7:44am Thu 7 May 09
I too have been struggling to get a diagnosis of Lyme disease and appropriate NHS treatment, due to the blinkered, tunnel-vision response from the NHS. They appear to be in denial about this disease, and many patients like Ria, myself, and others here are all battling against the system. Patients who self-diagnose Lyme face rounds of insulting consultants who treat them like hypochondriacs. It's bad enough being ill, without having to fight for recognition for the illness as well. Come on NHS - join the 21st Century; there's a growing body of patient evidence that proves that your approach is the wrong one. I am now on the road to recovery but have had to pay for a private consultation and private prescriptions to get there, which just isn't good enough.
Say It As It Is OK?, From Colchester says...
7:51am Thu 7 May 09
Wow what a response from so many people!
I, most probably along with most others, had little understanding of Lyme disease, its symptoms or the effect it has on so many. Hopefully this article will help push the issues more into the open.
Come on NHS (in the well worn words) It's not rocket science. Get on and treat these people properly!
Good luck to everyone...keep on fighting.
I, most probably along with most others, had little understanding of Lyme disease, its symptoms or the effect it has on so many. Hopefully this article will help push the issues more into the open.
Come on NHS (in the well worn words) It's not rocket science. Get on and treat these people properly!
Good luck to everyone...keep on fighting.
cherrywood, Aylesbury says...
9:03am Thu 7 May 09
Well done to Ria and The Gazette for exposing this situation. The unwillingness of the NHS to understand and treat Tick Borne Infections such as Lyme Disease is unethical. Their inability to respond appropriately to people with debilitating and distressing symptoms is tragic.
The research, experience and treatment protocols are already out there. How proud I would be of a Health System that is proactive in learning in order to minimise people's suffering.
I too have had to find and fund private treatment for Lyme Disease.
Best wishes to Ria for health and recovery.
The research, experience and treatment protocols are already out there. How proud I would be of a Health System that is proactive in learning in order to minimise people's suffering.
I too have had to find and fund private treatment for Lyme Disease.
Best wishes to Ria for health and recovery.
frogladd, colchester says...
9:25am Thu 7 May 09
is that 5 of us with lyme disease in this area. That's not rare!
I consider rare 5 in the whole country. Thats just the ones who have commented on here!!
I consider rare 5 in the whole country. Thats just the ones who have commented on here!!
Singing Chris, Wirral says...
9:41am Thu 7 May 09
A Dreadful disease. Two ticks ruined my life, combined with the NHS "recommended" antibiotics given too late. Still in my system Lyme reappeared four years later but NHS tests were negative, I now know negative results have a 50% failure rate = many are told negative but have the disease. I was labeled with ME/chronic fatigue and received the wrong treatment for 8 years. I too had to go privately to get the diagnosis I expected. Now I am starting very cheap simple antibiotic treatment which has already given me a glimpse of my former self. We need better testing so that the full extent of this hidden disease is uncovered, and recognised.
aptravis, Fordingbridge says...
10:02am Thu 7 May 09
Thousands suffer. Doctors ignore this devastation. The NHS is unconcerned. An excellent article which could be vital for your health.
adamuk, says...
11:00am Thu 7 May 09
I was diagnosed with MS 7 years ago and have gradualy declined in mobility over the years.
I have recently found out i DONT have MS but CHRONIC LYME DISEASE!
I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!
I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
I have recently found out i DONT have MS but CHRONIC LYME DISEASE!
I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!
I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
adamuk, says...
11:01am Thu 7 May 09
I was diagnosed with MS 7 years ago and have gradualy declined in mobility over the years.
I have recently found out i DONT have MS but CHRONIC LYME DISEASE!
I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!
I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
I have recently found out i DONT have MS but CHRONIC LYME DISEASE!
I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!
I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
adamuk, says...
11:03am Thu 7 May 09
I was diagnosed with MS 7 years ago and have gradualy declined in mobility over the years.I have recently found out i DONT have MS but CHRONIC LYME DISEASE!I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
adamuk, says...
11:13am Thu 7 May 09
I was diagnosed with MS 7 years ago and have gradualy declined in mobility over the years.I have recently found out i DONT have MS but CHRONIC LYME DISEASE!I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
adamuk, says...
11:13am Thu 7 May 09
I was diagnosed with MS 7 years ago and have gradualy declined in mobility over the years.I have recently found out i DONT have MS but CHRONIC LYME DISEASE!I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
adamuk, says...
11:13am Thu 7 May 09
I was diagnosed with MS 7 years ago and have gradualy declined in mobility over the years.I have recently found out i DONT have MS but CHRONIC LYME DISEASE!I thought great i can get better! well that was until my GP refused to give me long term antibiotics, as to him 'Chronic lyme ' was ficticious!I have recently discovered a treatment using Rife machines, google it and read about the great results acheived!
jmclarkson, Lancashire says...
12:45pm Thu 7 May 09
I am also a Lyme Disease sufferer and have been for 15 years. I wouldn't dare to calculate the costs of my private treatment including tests and medication over that time. At the same time, I wouldn't dare to discontinue treatment.
I feel that not only are we Lyme Disease sufferers paying for our own treatment but as much of the treatment is "trailblazing", we are also paying for the research into our own illness, research from which the NHS will eventually benefit.
I personally no longer think that the NHS exists for people like me.
I feel that not only are we Lyme Disease sufferers paying for our own treatment but as much of the treatment is "trailblazing", we are also paying for the research into our own illness, research from which the NHS will eventually benefit.
I personally no longer think that the NHS exists for people like me.
JonathanA, says...
1:01pm Thu 7 May 09
The only observation I can add is that the article does not make it clear how devastating this illness really is. Other comments here do give some indication of the range of symptoms suffered and the profound impact they have on Ria, but they do not reveal how Lyme has affected her life and that of those around her.
I do not understand why the NHS cannot provide a treatment that has been proved to be effective in the USA.
Best wishes to Ria and all who have posted here. I hope you get the correct treatment and an improvement in your health soon.
I do not understand why the NHS cannot provide a treatment that has been proved to be effective in the USA.
Best wishes to Ria and all who have posted here. I hope you get the correct treatment and an improvement in your health soon.
xavier48, bournemouth says...
1:29pm Thu 7 May 09
Eve Roberts
thurs 7th may 09
This is a great article, it still baffles me that the NHS says that this is a rare illness, I know so many people in my area, whom have through my help actually been diagnosed with the correct illness, so many had the wrong diagnosis, such as: Parkinson,s alzeimer MS,ME CFS.and many more,just to give you an example!!! Google: Under your skin, youtube. we are so behind with this epidemic, my daughter,s life is ruined totally,she got a MS diagnosis when she was 19, and now she is in a wheelchair, and has a lift in her home, when will this stop..
thurs 7th may 09
This is a great article, it still baffles me that the NHS says that this is a rare illness, I know so many people in my area, whom have through my help actually been diagnosed with the correct illness, so many had the wrong diagnosis, such as: Parkinson,s alzeimer MS,ME CFS.and many more,just to give you an example!!! Google: Under your skin, youtube. we are so behind with this epidemic, my daughter,s life is ruined totally,she got a MS diagnosis when she was 19, and now she is in a wheelchair, and has a lift in her home, when will this stop..
ricardohorta, Portugal says...
2:46pm Thu 7 May 09
Hi...Just registered to say thank you Ria and The Gazette for giving some inside view on Lyme Disease.
Myself, after 3 years of trying to get a diagnosis, doctors here still can't tell want i have. I live in Portugal, and soon i will have to go abroad to get a correct diagnosis because here they say that's all in my head. How can a man be super healthy at 27yo, and then gradually fell awfull, and all exames are ok and doctors don't know what it is. Strange uh!! No..it's probably Lyme Disease!!
Just one final note: Lyme can really mess up with your life, your body, and your brain. It can be really crippling and patients need, by themselfs, to run after the correct diagnosis and treatment and be their own advocates or they can end in a whellchair or even bedridden.
Best of luck...
Myself, after 3 years of trying to get a diagnosis, doctors here still can't tell want i have. I live in Portugal, and soon i will have to go abroad to get a correct diagnosis because here they say that's all in my head. How can a man be super healthy at 27yo, and then gradually fell awfull, and all exames are ok and doctors don't know what it is. Strange uh!! No..it's probably Lyme Disease!!
Just one final note: Lyme can really mess up with your life, your body, and your brain. It can be really crippling and patients need, by themselfs, to run after the correct diagnosis and treatment and be their own advocates or they can end in a whellchair or even bedridden.
Best of luck...
Tina Hayes, Glastonbury Somerset says...
3:23pm Thu 7 May 09
My very special sister Ria has suffered so much from this terrible disease but has been made to suffer even further from the lack of help and support from the NHS and her local PCT. Her family and friends have gotten together and launched an appeal website to help raise funds, awareness of the disease and to warn of the pitfalls that patients are forced to encounter with the NHS. So please visit www.lymeappeal.org
Red Tape, Colchester says...
4:11pm Thu 7 May 09
Maybe a Group Lawsuit would make the NHS take more notice! Sadly the legal route often seems to be the only option nowadays.
dexters, Cirencester says...
5:13pm Thu 7 May 09
It is scandalous how little the NHS appears to know about Lyme disease.
What has happened to Ria is sadly not rare: thousands of people in this country are seriously ill with Lyme disease and other tick-borne infections and are not being diagnosed correctly, or treated with antibiotics at the time of the tick bite for long enough. Some are fobbed off with ignorant assertions that there is no Lyme disease in the UK.
Many people originally diagnosed with ME, MS or Parkinsons are discovering that they in fact have Lyme. I've been extrememly ill now for nearly 20 years and was given an ME diagnosis. Only through my own efforts did I manage to find a private doctor 2 years ago who arranged for blood tests to be sent to USA, since the testing offered by the NHS results in many false negatives, especially if you have only just been bitten or, like me, were bitten many years ago. Tests show that I do indeed have Lyme disease and several other tick-borne infections and the outcome of treatment at this late stage is uncertain. Like Ria, I have spent the earth trying to improve my health, despite being too unwell to work .
Proper research and longer treatment, together with an education programme for GPs are urgently needed.
What has happened to Ria is sadly not rare: thousands of people in this country are seriously ill with Lyme disease and other tick-borne infections and are not being diagnosed correctly, or treated with antibiotics at the time of the tick bite for long enough. Some are fobbed off with ignorant assertions that there is no Lyme disease in the UK.
Many people originally diagnosed with ME, MS or Parkinsons are discovering that they in fact have Lyme. I've been extrememly ill now for nearly 20 years and was given an ME diagnosis. Only through my own efforts did I manage to find a private doctor 2 years ago who arranged for blood tests to be sent to USA, since the testing offered by the NHS results in many false negatives, especially if you have only just been bitten or, like me, were bitten many years ago. Tests show that I do indeed have Lyme disease and several other tick-borne infections and the outcome of treatment at this late stage is uncertain. Like Ria, I have spent the earth trying to improve my health, despite being too unwell to work .
Proper research and longer treatment, together with an education programme for GPs are urgently needed.
nseal, aberdeen says...
5:37pm Thu 7 May 09
Sadly, Ria's story is all too common. I have had Lyme disease for nearly 1 year. In that time, I have been forced to spend over £10,000 on private treatment. I had neurological lyme disease - the bacteria was in my brain, affecting my ability to think, co-ordination, balance, with constant headaches, nausea, dizziness and pain. I struggled to walk as the bacteria had affected the nerves to my legs. When the very limited NHS treatment failed to cure me, they referred me to a psychiatrist. I am not mad, I am ill. I am now getting better on the private treatment but feel the battle with the doctors has been as stressful as having this awful disease.
tia wirral, Hoylake says...
6:29pm Thu 7 May 09
It's good to see the Gazette has taken the time to cover the battle that Ria and many of us are having with the NHS.
Like Ria I have been diagnosed with chronic Lyme Disease, not via the NHS, but privately. I'd been passed from specialist to specialist via the NHS. They all told me what I'd not got, but no-one could tell me what was causing my joints, and now my severe neurological problems.
Eventually I was given the Fibromyalgia label, which didn't fit with my hot swollen joints and the other symptoms I was expereincing.
Both my neurologist and GP have told me I can't have Lyme because my NHS test came back negative twice. While they are happy to dish out painkillers, they won't prescribe me the medication I need to give me back my life.
I'm into my 4th year of illness now. Most of the time I am too ill to get out of bed. I can't afford to pay for the treatment I need. Hopefully, exposure such as this by Ria, will make people realise Lyme Disease is not rare, and it's not going to go away. How many more people need to suffer before it is accepeted, and treated by the NHS?
Like Ria I have been diagnosed with chronic Lyme Disease, not via the NHS, but privately. I'd been passed from specialist to specialist via the NHS. They all told me what I'd not got, but no-one could tell me what was causing my joints, and now my severe neurological problems.
Eventually I was given the Fibromyalgia label, which didn't fit with my hot swollen joints and the other symptoms I was expereincing.
Both my neurologist and GP have told me I can't have Lyme because my NHS test came back negative twice. While they are happy to dish out painkillers, they won't prescribe me the medication I need to give me back my life.
I'm into my 4th year of illness now. Most of the time I am too ill to get out of bed. I can't afford to pay for the treatment I need. Hopefully, exposure such as this by Ria, will make people realise Lyme Disease is not rare, and it's not going to go away. How many more people need to suffer before it is accepeted, and treated by the NHS?
MartinCan, Colchester says...
6:57pm Thu 7 May 09
Ria - I know from personal experience just how debilitating Lyme is, and especially how frustrating it is to convince medical authorities to recognise it, because 'official' policy, here and in the US (where Lyme is even more common) is plain wrong.
MartinCan, Colchester says...
6:58pm Thu 7 May 09
Ria - I know from personal experience just how debilitating Lyme is, and especially how frustrating it is to convince medical authorities to recognise it, because 'official' policy, here and in the US (where Lyme is even more common) is plain wrong.
franann, Kilkenny says...
7:13pm Thu 7 May 09
Thanks Ria for telling your story to the whole world. Its my story too, so I appreciate your great effort.
I got bitten in New Jersey in 1995, I had no idea about Lyme..only heard about it when I got Bell's Palsy( which still is a major problem for me,)a year later.
Our health System here in Ireland thinks a couple of weeks Antibiotics sorts us out.When will the ever learn.
fourteen years later and still listening to" You've been already treated for Lyme".
My wish for all Lyme patients is for them to have access to a LLMD.
I had to borrow money to go abroad to be diagnosed and treated.
Best wishes, Ria
I got bitten in New Jersey in 1995, I had no idea about Lyme..only heard about it when I got Bell's Palsy( which still is a major problem for me,)a year later.
Our health System here in Ireland thinks a couple of weeks Antibiotics sorts us out.When will the ever learn.
fourteen years later and still listening to" You've been already treated for Lyme".
My wish for all Lyme patients is for them to have access to a LLMD.
I had to borrow money to go abroad to be diagnosed and treated.
Best wishes, Ria
franann, Kilkenny says...
7:13pm Thu 7 May 09
Thanks Ria for telling your story to the whole world. Its my story too, so I appreciate your great effort.
I got bitten in New Jersey in 1995, I had no idea about Lyme..only heard about it when I got Bell's Palsy( which still is a major problem for me,)a year later.
Our health System here in Ireland thinks a couple of weeks Antibiotics sorts us out.When will the ever learn.
fourteen years later and still listening to" You've been already treated for Lyme".
My wish for all Lyme patients is for them to have access to a LLMD.
I had to borrow money to go abroad to be diagnosed and treated.
Best wishes, Ria
I got bitten in New Jersey in 1995, I had no idea about Lyme..only heard about it when I got Bell's Palsy( which still is a major problem for me,)a year later.
Our health System here in Ireland thinks a couple of weeks Antibiotics sorts us out.When will the ever learn.
fourteen years later and still listening to" You've been already treated for Lyme".
My wish for all Lyme patients is for them to have access to a LLMD.
I had to borrow money to go abroad to be diagnosed and treated.
Best wishes, Ria
julie 1, lancashire says...
8:04pm Thu 7 May 09
My daughter has been ill for almost half her life she is now 26yrs old.Every consultant we saw labelled her 'unique' as they could find no reason for her chronic pain.After 2 major brain op's and countless medication they all but gave up on her.We went privately and she was diagnosed with Lyme(her case was blindingly obvious bitten twice with 2 subsequent Bells Palsy episodes)It makes my blood boil that all these people and thier loved ones are suffering needlessley when just a little education and less of a blinkered attitude could make SO much of a difference!!
EllieM, Hexham, Northumberland says...
10:50pm Thu 7 May 09
It took 7 years and 28 specialist to finally diagnosis me with Lyme Disease. I had no help from NHS with my diagnosis either. I thought 3 years into my illness that I might have Lyme, but my GP told me that Lyme is not a UK disease. Only a US disease. So I was refused a Lyme test, but I was offered to go see a shrink. My Gp told me I had every test, every MRI, that most people in their life time does get, and everything was normal. (the only test I did not get was a Lyme test).
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
EllieM, Hexham, Northumberland says...
10:52pm Thu 7 May 09
It took 7 years and 28 specialist to finally diagnosis me with Lyme Disease. I had no help from NHS with my diagnosis either. I thought 3 years into my illness that I might have Lyme, but my GP told me that Lyme is not a UK disease. Only a US disease. So I was refused a Lyme test, but I was offered to go see a shrink. My Gp told me I had every test, every MRI, that most people in their life time does get, and everything was normal. (the only test I did not get was a Lyme test).
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
EllieM, Hexham, Northumberland says...
10:52pm Thu 7 May 09
It took 7 years and 28 specialist to finally diagnosis me with Lyme Disease. I had no help from NHS with my diagnosis either. I thought 3 years into my illness that I might have Lyme, but my GP told me that Lyme is not a UK disease. Only a US disease. So I was refused a Lyme test, but I was offered to go see a shrink. My Gp told me I had every test, every MRI, that most people in their life time does get, and everything was normal. (the only test I did not get was a Lyme test).
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
EllieM, Hexham, Northumberland says...
10:53pm Thu 7 May 09
It took 7 years and 28 specialist to finally diagnosis me with Lyme Disease. I had no help from NHS with my diagnosis either. I thought 3 years into my illness that I might have Lyme, but my GP told me that Lyme is not a UK disease. Only a US disease. So I was refused a Lyme test, but I was offered to go see a shrink. My Gp told me I had every test, every MRI, that most people in their life time does get, and everything was normal. (the only test I did not get was a Lyme test).
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
EllieM, Hexham, Northumberland says...
10:53pm Thu 7 May 09
It took 7 years and 28 specialist to finally diagnosis me with Lyme Disease. I had no help from NHS with my diagnosis either. I thought 3 years into my illness that I might have Lyme, but my GP told me that Lyme is not a UK disease. Only a US disease. So I was refused a Lyme test, but I was offered to go see a shrink. My Gp told me I had every test, every MRI, that most people in their life time does get, and everything was normal. (the only test I did not get was a Lyme test).
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
EllieM, Hexham, Northumberland says...
10:55pm Thu 7 May 09
It took 7 years and 28 specialist to finally diagnosis me with Lyme Disease. I had no help from NHS with my diagnosis either. I thought 3 years into my illness that I might have Lyme, but my GP told me that Lyme is not a UK disease. Only a US disease. So I was refused a Lyme test, but I was offered to go see a shrink. My Gp told me I had every test, every MRI, that most people in their life time does get, and everything was normal. (the only test I did not get was a Lyme test).
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
My MRI scan shows that I have small vessel disease (white matter in the brain)
I had hot flushes (my GP thought it was menopause), I had pins and needles in my hands and feet, always felt cold,
the headaches and the pain my body was bad in I do not wish any anyone.
I have nero-Lyme as it took 7 years to diagnosis me. I found a LLMD and he took some blood and sent it to the states for testing, because the NHS
does not have the right compound to test properly. So my LLMD thought the states would give a true picture if I have Lyme or not. Well the test came back positive for Lyme and positive for loads of Co-infections. So I started with IV treatment straight away (I had treatment at my home, by a private healthcare company) Luckly my private insurance covered the IV treatment, other wise it would have cost me £24,000 just for the IV.
Once I started the 12 weeks of IV I started feeling better not 100% but better then I was the
past 7 years. After the IV I had 3 months of oral meds. that I had to pay for my self (£900) as my GP would not put meds on NHS. Even though my LLMD sent letters to my GP through out my treatment. But my GP would not budge.
You would think that my GP would finally be happy for me that I finally found out what was wrong with me, after 7 years... But NOOOOO... The GP does not want to know about it..
The more I talk about this the madder I get...
Us lymies needs help for NHS, GP's the Goverment, HPA...
The only people that can educate them is the thousands of people that suffer from Lyme.. But the GP's just want to sweep this under the rug, hoping it will go away... Well we will not go away!
The GP's could run but they cannot hide..
louise77, Leicestershire says...
11:29pm Thu 7 May 09
I have been chronically ill with an infection for the last 7 years. I recently found out it is probably Lyme disease. I have been funding my own consultant visits and antibiotics. I feel better with antibiotics but the symptoms come back. None of the NHS GP’s/consultants I have seen believe me. They always explain away any symptoms that I describe. My partner has also recently been diagnosed with chronic Lyme disease. He has neurological and fatigue symptoms. GPs have been telling him for the last 15 years that there is nothing wrong. He has had 2 positive American tests which showed he has American and European strains of Lyme and its coinfections. He is also struggling to get the NHS to believe he is ill as his NHS test came back negative. This disease is becoming common it is not RARE. Doctors need to wake up to this fact because it’s not going to go away. We desperately need researchers to investigate this illness further. I am alive but I am not living. I can relate to the poster who said they feel like they are living their life through a third person. You can’t describe how devastating this illness is to people who haven’t got Lyme – they just don’t get it.
I wish the best of luck to Ria and everyone with their battle against this illness and against the system.
I wish the best of luck to Ria and everyone with their battle against this illness and against the system.
Erica S., U.S. says...
1:25am Fri 8 May 09
Kudos to Ria and to the Gazette for this very important article! However as many have already commented on here, Lyme disease is anything but rare...and if this misconception continues amongst the public and medical community, untreated Lyme disease will surely become a major international public health issue. As an American, I'm not familiar with the NHS, but was disturbed to learn from the comments here that the UK national health system defers to the corrupt IDSA for its Lyme diagnosis and treatment guidelines. I am also quite appalled that the NHS - presumably designed to provide UK citizens equal access to health services - would refuse to cover antibiotic treatments. The fact that Ria and hundreds of others are digging into their life savings for private doctors and even travelling to the US for treatment should be clear evidence that these people indeed do suffer from a chronic bacterial illness. Hopefully more brave chronic Lyme patients like Ria will continue to speak up, and force a change in what is clearly a travesty both in the UK and abroad.
Titchinch, Cradlehall says...
7:53am Fri 8 May 09
Lyme disease is like Pandora's box, no-one really wants to look into it. Currently, unless at the early localised stage of infection, with a clear and present bull's-eye rash, the clinical diagnosis of Lyme disease requires multiple positive laboratory test results. To my mind this is a medical contradiction in terms. Especially when the current two tier blood testing procedure was designed for the epidemiological study of Lyme disease, and was never intended to be diagnostic in an individual's health care.
Clinical diagnosis should be just that, without the reliance on inconclusive blood tests to deny the patient their illness, and instead infer it is a self induced psychosomatic 'post-something-or-o
ther' syndrome, or depression, or the menopause.
Guidelines are great, when they make sense and allow doctors to practice clinical judgement and prescribe accordingly. But what's really needed first is conclusive testing procedures for all tick-borne diseases, not just borrelia, and all should be considered as notifiable throughout the entire UK and Ireland. If they are not notifiable diseases the real number of people affected will never be known. As the comments here have indicated, it's not as rare as some would like to believe, and just how many people will go on suffering due to misdiagnosis?
Clinical diagnosis should be just that, without the reliance on inconclusive blood tests to deny the patient their illness, and instead infer it is a self induced psychosomatic 'post-something-or-o
ther' syndrome, or depression, or the menopause.
Guidelines are great, when they make sense and allow doctors to practice clinical judgement and prescribe accordingly. But what's really needed first is conclusive testing procedures for all tick-borne diseases, not just borrelia, and all should be considered as notifiable throughout the entire UK and Ireland. If they are not notifiable diseases the real number of people affected will never be known. As the comments here have indicated, it's not as rare as some would like to believe, and just how many people will go on suffering due to misdiagnosis?
kr colchester, colchester says...
2:54pm Fri 8 May 09
Is it just me or is the silence from the medical fraternity deafening
cehansen, Half Moon Bay says...
5:56pm Fri 8 May 09
This is a sad state of affairs when the NHS is as bad as American health care in recognizing and treating this worldwide endemic. What is going on here? This woman has had everything taken from her and must do everything on her own, while trying to regain her health? As ill as she is? How can these health officials live with themselves in such denials? I applaud Ria for standing up and standing out regarding her illness. NHS can go to hell!
mandy614, Washington DC says...
2:54pm Sat 9 May 09
Ria is both brave and strong willed, as this disease is not for the weak. This determination to fight for her life, as this disease slowly kills...is sadly not enough without proper medical assistance. It is CRIMINAL not to help this poor woman have her chance at life. She has lost alomst a decade of her life to this serious illness. It's her HUMAN RIGHT to recieve the help she NEEDS and DESERVES. My thoughts and prayers are with you Ria.
Ria Heslop, Colchester says...
6:25am Sun 10 May 09
I want to thank Everyone for their support, private emails and stories. As we can see from the response this disease id NOT rare and as I thought many are suffering in my area (and they are only a few that have posted).
Our hope is that the NHS and my local PCT wake up to this fact as this is a medical Tsunami that will NOT go away, no matter how much they try to ignore it.
So again Thank You for your support.
Ria Heslop
Our hope is that the NHS and my local PCT wake up to this fact as this is a medical Tsunami that will NOT go away, no matter how much they try to ignore it.
So again Thank You for your support.
Ria Heslop
Skygod890, Gosfield says...
6:34pm Sun 10 May 09
I had a tick on my leg all the way back from a trip to Dartmoor last year, but luckily it led to nothing. When I asked my GP about it he tried to give the strong impression that Lyme Disease is "not a problem" in this country. I am not sure I believe that.
But what I find even more astonishing is the comment from Mike Cable, assistant director of corporate services for NHS North East Essex: "However, we do need Mrs Heslop’s help to enable us to help her".
Correct me if I have missed the point here, but she is the patient, and his job is to ensure the best delivery of his service, and part of that is to assist her to get the information he requires. If she is not providing it, assuming that she wishes to have appropriate treatment, simple logic suggests that it is because of difficulties that he is responsible for helping her to get past.
To say otherwise seems dereliction of duty in this case. It is hardly the patient's responsibility to make life easier for the NHS, and if this person thinks otherwise, he is perhaps in the wrong job. I willingly pay my taxes for what should be a good service, I expect it to be so when I need it, and it is now up to them to prove that it can be so in this case.
But what I find even more astonishing is the comment from Mike Cable, assistant director of corporate services for NHS North East Essex: "However, we do need Mrs Heslop’s help to enable us to help her".
Correct me if I have missed the point here, but she is the patient, and his job is to ensure the best delivery of his service, and part of that is to assist her to get the information he requires. If she is not providing it, assuming that she wishes to have appropriate treatment, simple logic suggests that it is because of difficulties that he is responsible for helping her to get past.
To say otherwise seems dereliction of duty in this case. It is hardly the patient's responsibility to make life easier for the NHS, and if this person thinks otherwise, he is perhaps in the wrong job. I willingly pay my taxes for what should be a good service, I expect it to be so when I need it, and it is now up to them to prove that it can be so in this case.
Ria Heslop, Colchester says...
7:23pm Sun 10 May 09
Just to confirm Skygod890, My test results, diagnostic letters and Consultants letters have been provided so many time I have actually lost count.
If I did not provide them why possibly would the NHS have given me IV treatment initially only to withdraw it.
So that in itslef says it all...... They would never treat a patient without a confirmed diagnosis, so this statement from Mike Cable was a complete fabrication which actually backfired as the reported herself had sight of these letters.
Ria Heslop
If I did not provide them why possibly would the NHS have given me IV treatment initially only to withdraw it.
So that in itslef says it all...... They would never treat a patient without a confirmed diagnosis, so this statement from Mike Cable was a complete fabrication which actually backfired as the reported herself had sight of these letters.
Ria Heslop
chellemefleur, spalding lincs says...
9:55am Mon 11 May 09
We often niavely think we will be looked after WHATEVER when we are ill HOW WRONG COULD WE BE!! this is so sad that Ria is having to Battle the health Authorities ASWELL as her illness. Its sad and its unbelievable but you only have to look at the postcode lottery for Cancer treatment to see what a diabolical mess you can find yourself in if you get the wrong illness!! Unfortunately if your going to get a disease dont get this one! Unfortunately its not that simple i speak form experience i too have lyme disease and travel to America for treatment its a life changing illness i was even paraylised from the waist down and it took me years to recover and i had to go to America earlier this year because i could feel myself getting iller and iller without the correct treatment.Previous to this the NHS had taken me into hospital for first 4 weeks and then a 5 week stay in a neurological london hospital and the outcome: I am physcosematic i want to be ill !!!! i was told to stop looking for the medical answer, I kept saying,"I dont want to be ill.... I am ill i just want to know what it is?" but apparently i was told you can actually paralise yourself due to stress!! and because i WAS a young mum running two children and my own business it was this that caused my paralisis ..... all the time it was Lyme disease and thank god i diagnosed myself and found the correct doctors on the internet plus hundreds of other sufferers who all going through the same hoffific illness and lack of support .we are all going through this alone... so just imagine for a minute you have had the most terrible illness which has taken your lifeas you know it away from you overnight now get a computer diagnose yourself find the doctors, drugs, fight to make the NHS believe you are actually ill...... the truth is we dont have time to be ill we are so bust fighting the illness and the red tape that surrounds it,well done Ria for your fight so far, its so sad you have a long road ahead of you and no one to come take your hand and look after you like you get with everyday diseases!
sheeptick13, Reydon says...
12:38pm Wed 13 May 09
In 2006 I saw a specialist in the NHS, he was the only one really looking at Lyme disease. He has now retired. However, he diagnosed me with chronic Lyme borreliosis and wrote to my GP to say I needed 2 to 4 weeks of intravenous antibiotics. My GP said it was impossible as there was no consultant in our area who would supervise the iv treatment. I was too ill to fight this, and I have no one to fight for me.
I have heard of other people having iv treatment on the NHS and then absolutley no follow-up after that, as if they no longer existed.
What do doctors think they are doing? If we had AIDS we would be monitored and assessed and if we had TB we would have long-term antibiotics. Because we have an infection that has been kept covered up, we are ignored and left to suffer.
Why are they pretending Lyme is not chronic?
Why is Lyme studied in biowarfare laboratories?
And finally, why did this sort of borreliosis appear in the 1970s a few miles away from one of the world's biggest germ warfare research institutes, on Plum Island, off the coast of Connecticut?
Are these facts the reason for the health service to pretend that diseases like Lyme, ME and the huge increase in neurological diseases in general, like Alzheimers disease, are not really happening - and that all we need is some counselling so we can learn to live with being disabled?
So many questions and no answers from our so-called experts.
And don't forget the cover-up has to be so complete, that children who get Lyme and/or ME can end up being taken from their parents, and the parents blamed for making the children ill.
When this whole sorry state of affairs is opened up like the can of worms that it is, the truth will expose those who lied to us and did not have the guts to tell the truth. I hope one day they will have the courage to speak out and not carry on saying nothing while people suffer.
The Nazis relied on good people doing nothing (although a few did of course) and they got away with murder. What is happening now is on a par with that situation, as lives are destroyed in ever-increasing numbers.
Any nurses or doctors who are beginning to be suspicious about this, please do your best to find out the truth, and God bless you if you have the nerve to speak out.
I have heard of other people having iv treatment on the NHS and then absolutley no follow-up after that, as if they no longer existed.
What do doctors think they are doing? If we had AIDS we would be monitored and assessed and if we had TB we would have long-term antibiotics. Because we have an infection that has been kept covered up, we are ignored and left to suffer.
Why are they pretending Lyme is not chronic?
Why is Lyme studied in biowarfare laboratories?
And finally, why did this sort of borreliosis appear in the 1970s a few miles away from one of the world's biggest germ warfare research institutes, on Plum Island, off the coast of Connecticut?
Are these facts the reason for the health service to pretend that diseases like Lyme, ME and the huge increase in neurological diseases in general, like Alzheimers disease, are not really happening - and that all we need is some counselling so we can learn to live with being disabled?
So many questions and no answers from our so-called experts.
And don't forget the cover-up has to be so complete, that children who get Lyme and/or ME can end up being taken from their parents, and the parents blamed for making the children ill.
When this whole sorry state of affairs is opened up like the can of worms that it is, the truth will expose those who lied to us and did not have the guts to tell the truth. I hope one day they will have the courage to speak out and not carry on saying nothing while people suffer.
The Nazis relied on good people doing nothing (although a few did of course) and they got away with murder. What is happening now is on a par with that situation, as lives are destroyed in ever-increasing numbers.
Any nurses or doctors who are beginning to be suspicious about this, please do your best to find out the truth, and God bless you if you have the nerve to speak out.
sheeptick13, Reydon says...
12:38pm Wed 13 May 09
In 2006 I saw a specialist in the NHS, he was the only one really looking at Lyme disease. He has now retired. However, he diagnosed me with chronic Lyme borreliosis and wrote to my GP to say I needed 2 to 4 weeks of intravenous antibiotics. My GP said it was impossible as there was no consultant in our area who would supervise the iv treatment. I was too ill to fight this, and I have no one to fight for me.
I have heard of other people having iv treatment on the NHS and then absolutley no follow-up after that, as if they no longer existed.
What do doctors think they are doing? If we had AIDS we would be monitored and assessed and if we had TB we would have long-term antibiotics. Because we have an infection that has been kept covered up, we are ignored and left to suffer.
Why are they pretending Lyme is not chronic?
Why is Lyme studied in biowarfare laboratories?
And finally, why did this sort of borreliosis appear in the 1970s a few miles away from one of the world's biggest germ warfare research institutes, on Plum Island, off the coast of Connecticut?
Are these facts the reason for the health service to pretend that diseases like Lyme, ME and the huge increase in neurological diseases in general, like Alzheimers disease, are not really happening - and that all we need is some counselling so we can learn to live with being disabled?
So many questions and no answers from our so-called experts.
And don't forget the cover-up has to be so complete, that children who get Lyme and/or ME can end up being taken from their parents, and the parents blamed for making the children ill.
When this whole sorry state of affairs is opened up like the can of worms that it is, the truth will expose those who lied to us and did not have the guts to tell the truth. I hope one day they will have the courage to speak out and not carry on saying nothing while people suffer.
The Nazis relied on good people doing nothing (although a few did of course) and they got away with murder. What is happening now is on a par with that situation, as lives are destroyed in ever-increasing numbers.
Any nurses or doctors who are beginning to be suspicious about this, please do your best to find out the truth, and God bless you if you have the nerve to speak out.
I have heard of other people having iv treatment on the NHS and then absolutley no follow-up after that, as if they no longer existed.
What do doctors think they are doing? If we had AIDS we would be monitored and assessed and if we had TB we would have long-term antibiotics. Because we have an infection that has been kept covered up, we are ignored and left to suffer.
Why are they pretending Lyme is not chronic?
Why is Lyme studied in biowarfare laboratories?
And finally, why did this sort of borreliosis appear in the 1970s a few miles away from one of the world's biggest germ warfare research institutes, on Plum Island, off the coast of Connecticut?
Are these facts the reason for the health service to pretend that diseases like Lyme, ME and the huge increase in neurological diseases in general, like Alzheimers disease, are not really happening - and that all we need is some counselling so we can learn to live with being disabled?
So many questions and no answers from our so-called experts.
And don't forget the cover-up has to be so complete, that children who get Lyme and/or ME can end up being taken from their parents, and the parents blamed for making the children ill.
When this whole sorry state of affairs is opened up like the can of worms that it is, the truth will expose those who lied to us and did not have the guts to tell the truth. I hope one day they will have the courage to speak out and not carry on saying nothing while people suffer.
The Nazis relied on good people doing nothing (although a few did of course) and they got away with murder. What is happening now is on a par with that situation, as lives are destroyed in ever-increasing numbers.
Any nurses or doctors who are beginning to be suspicious about this, please do your best to find out the truth, and God bless you if you have the nerve to speak out.
sheeptick13, Reydon says...
12:38pm Wed 13 May 09
In 2006 I saw a specialist in the NHS, he was the only one really looking at Lyme disease. He has now retired. However, he diagnosed me with chronic Lyme borreliosis and wrote to my GP to say I needed 2 to 4 weeks of intravenous antibiotics. My GP said it was impossible as there was no consultant in our area who would supervise the iv treatment. I was too ill to fight this, and I have no one to fight for me.
I have heard of other people having iv treatment on the NHS and then absolutley no follow-up after that, as if they no longer existed.
What do doctors think they are doing? If we had AIDS we would be monitored and assessed and if we had TB we would have long-term antibiotics. Because we have an infection that has been kept covered up, we are ignored and left to suffer.
Why are they pretending Lyme is not chronic?
Why is Lyme studied in biowarfare laboratories?
And finally, why did this sort of borreliosis appear in the 1970s a few miles away from one of the world's biggest germ warfare research institutes, on Plum Island, off the coast of Connecticut?
Are these facts the reason for the health service to pretend that diseases like Lyme, ME and the huge increase in neurological diseases in general, like Alzheimers disease, are not really happening - and that all we need is some counselling so we can learn to live with being disabled?
So many questions and no answers from our so-called experts.
And don't forget the cover-up has to be so complete, that children who get Lyme and/or ME can end up being taken from their parents, and the parents blamed for making the children ill.
When this whole sorry state of affairs is opened up like the can of worms that it is, the truth will expose those who lied to us and did not have the guts to tell the truth. I hope one day they will have the courage to speak out and not carry on saying nothing while people suffer.
The Nazis relied on good people doing nothing (although a few did of course) and they got away with murder. What is happening now is on a par with that situation, as lives are destroyed in ever-increasing numbers.
Any nurses or doctors who are beginning to be suspicious about this, please do your best to find out the truth, and God bless you if you have the nerve to speak out.
I have heard of other people having iv treatment on the NHS and then absolutley no follow-up after that, as if they no longer existed.
What do doctors think they are doing? If we had AIDS we would be monitored and assessed and if we had TB we would have long-term antibiotics. Because we have an infection that has been kept covered up, we are ignored and left to suffer.
Why are they pretending Lyme is not chronic?
Why is Lyme studied in biowarfare laboratories?
And finally, why did this sort of borreliosis appear in the 1970s a few miles away from one of the world's biggest germ warfare research institutes, on Plum Island, off the coast of Connecticut?
Are these facts the reason for the health service to pretend that diseases like Lyme, ME and the huge increase in neurological diseases in general, like Alzheimers disease, are not really happening - and that all we need is some counselling so we can learn to live with being disabled?
So many questions and no answers from our so-called experts.
And don't forget the cover-up has to be so complete, that children who get Lyme and/or ME can end up being taken from their parents, and the parents blamed for making the children ill.
When this whole sorry state of affairs is opened up like the can of worms that it is, the truth will expose those who lied to us and did not have the guts to tell the truth. I hope one day they will have the courage to speak out and not carry on saying nothing while people suffer.
The Nazis relied on good people doing nothing (although a few did of course) and they got away with murder. What is happening now is on a par with that situation, as lives are destroyed in ever-increasing numbers.
Any nurses or doctors who are beginning to be suspicious about this, please do your best to find out the truth, and God bless you if you have the nerve to speak out.
Joanne Drayson, GUILDFORD says...
6:15pm Wed 13 May 09
Thank you Gazette for publishing this story.
The current situation over diagnosing Lyme Disease and treating it in the UK is disgraceful, through no fault of the General Practitioners who have not been alerted to the difficulties over diagnosis treatment and problems with blood testing.
I must be one of the very few patients whose GP considered my debilitating arthritis and muscle weakness after a chance course of antibiotics improved my condition and because there had been other patients treated for Lyme Disease. Eventually her suspicions were confirmed by a private specialist doctor and now after months of antibiotics I am nearly 100% improved. I can again walk up and down stairs normally something I had not been able to do for 3 1/2 years.
I have been Retired from the Civil Service on Ill Health grounds and have sufferred Lyme Arthritis for 6 years. Seen 3 Rheumatologists diagnosed with Poly Myalgia Rheumatica, fibromyalgia, ME/CFS before my GP considered Lyme Disease. She was advised by HPA to stop my antibiotics many months ago but each time they were stopped the symptoms returned. Thank goodness she considered the guidelines written by ILADS International Lyme and Associated Diseases Society and continued to treat inspite of the HPA 'Expert's ' advice.
What a waste of people's lives including children suffering needlessly when a bit of knowledge and a few weeks antibiotics taken at the start of this illness could have avoided 6 years of pain and disability.
Shame on the NHS but thank goodness for my GP and private doctor.
The current situation over diagnosing Lyme Disease and treating it in the UK is disgraceful, through no fault of the General Practitioners who have not been alerted to the difficulties over diagnosis treatment and problems with blood testing.
I must be one of the very few patients whose GP considered my debilitating arthritis and muscle weakness after a chance course of antibiotics improved my condition and because there had been other patients treated for Lyme Disease. Eventually her suspicions were confirmed by a private specialist doctor and now after months of antibiotics I am nearly 100% improved. I can again walk up and down stairs normally something I had not been able to do for 3 1/2 years.
I have been Retired from the Civil Service on Ill Health grounds and have sufferred Lyme Arthritis for 6 years. Seen 3 Rheumatologists diagnosed with Poly Myalgia Rheumatica, fibromyalgia, ME/CFS before my GP considered Lyme Disease. She was advised by HPA to stop my antibiotics many months ago but each time they were stopped the symptoms returned. Thank goodness she considered the guidelines written by ILADS International Lyme and Associated Diseases Society and continued to treat inspite of the HPA 'Expert's ' advice.
What a waste of people's lives including children suffering needlessly when a bit of knowledge and a few weeks antibiotics taken at the start of this illness could have avoided 6 years of pain and disability.
Shame on the NHS but thank goodness for my GP and private doctor.
Betsy0303, Cleveland, Ohio, USA says...
5:27am Thu 14 May 09
Ria, bless you. I live in Ohio in the USA, and I saw 26 doctors over 3 years after being bitten by a tick, and none believed I had Lyme, nor would test me for Lyme. After several years, I was able to find a Lyme Literate Doctor, who believed me and diagnosed me and has treated me for over 15 years for Lyme. It does get better! Good luck to you!
cmany, CO says...
3:17pm Fri 15 May 09
I have been suffering from Lyme for nearly 30 yrs...and it is disgusting how it is still being treated to this day. Those in the mainstream medical communities should be ashamed of themselves - no matter what country they are from. Rather then being responsible, and treating Lyme & Company as it should, they keep their heads in the sand.
I guess they would rather wait until the numbers will bankrupt a nation before they choose to admit the true and damaging effects of this disease...
Had the truth been admitted 10-20 years ago, our nations would have lower numbers of people needing gov't help...there would be so many more citizens who could function as normal people on a daily basis...so many who would not have died due to ignorance...
It is truly pathetic that such "educated" people could close a blind eye to facts about this disease...and for what? Well I know here in the States - its because of money and power...yep our IDSA panel members are profiteering off of the lies they spread about this illness...this has been proven...
The more that is learned - the more it is denied - what in the world does that solve? We are not 2 nations filled with people who want to be ill. Enough with the lame excuses. When are these doc's going to realize that WE - the truly ill are talking - WE know that we are SICK...not in the head...but sick of the ignorance. Sick of the lies. We have done NOTHING to deserve this kind of treatment...yet we must suffer it. How morally and ethically wrong. SHAME ON ALL OF THEM.
I guess they would rather wait until the numbers will bankrupt a nation before they choose to admit the true and damaging effects of this disease...
Had the truth been admitted 10-20 years ago, our nations would have lower numbers of people needing gov't help...there would be so many more citizens who could function as normal people on a daily basis...so many who would not have died due to ignorance...
It is truly pathetic that such "educated" people could close a blind eye to facts about this disease...and for what? Well I know here in the States - its because of money and power...yep our IDSA panel members are profiteering off of the lies they spread about this illness...this has been proven...
The more that is learned - the more it is denied - what in the world does that solve? We are not 2 nations filled with people who want to be ill. Enough with the lame excuses. When are these doc's going to realize that WE - the truly ill are talking - WE know that we are SICK...not in the head...but sick of the ignorance. Sick of the lies. We have done NOTHING to deserve this kind of treatment...yet we must suffer it. How morally and ethically wrong. SHAME ON ALL OF THEM.
Wright Charlie, Colchester says...
3:26pm Fri 15 May 09
I also live in Colchester – within 2 miles of Ria, and had to go private for the tests in January which were positive. I was diagnosed with ME way back in 1993 and have wasted away since then. Sad fact is that my partner and children also have CFS/ME as a diagnosis. Apparently, it is not unusual for families to have this misunderstood syndrome. The work of Prof G Nicolson suggests those “rare” people who have been bitten may only be the initial carriers and provide a transport mechanism.
Can we all get together and sneeze in Parliament! Sort of germ warfare!
Can we all get together and sneeze in Parliament! Sort of germ warfare!
pips333, earls colne says...
8:54pm Fri 15 May 09
I'm another Lyme sufferer from Colchester.In fact, I used to live no more than a mile away from another victim .Lyme is not rare, just rarely diagnosed. I was very ill for over three years before being diagnosed with Lyme and several co-infections. I used to be athletically fit, run a business and look after my son but gradually, I became a near invalid, in so much pain and hardly able to walk or talk coherently.I developed word block, verbal dyslexia and vertigo and the list of symptoms just increased daily.I was told, on the basis of the standard set of blood tests to go home and have a massage as there was nothing wrong with me.(A later GP didn't even examine me or take my blood pressure-)I hadn't heard of Lyme until last September when I saw on the net an article about another colchester lady. Realising then I had the EM rash, I was privately tested and diagnosed. The NHS told me that as I had started my treatment privately, I had to continue that way and the NHS wouldn't fund me.
I feel fortunate that I managed to get a diagnosis as I was becoming very sick indeed. Several months of antibiotics are now having an incredibly positive effect and I am at last starting to heal. I know it will take a long time but I will get there. I would like to thank Ria and the Gazette for a really well written article and paticularly for raising awareness of a terrible silent disease which could be so easily "prevented" or treated in early stages to avoid all this suffering.
Pips
I feel fortunate that I managed to get a diagnosis as I was becoming very sick indeed. Several months of antibiotics are now having an incredibly positive effect and I am at last starting to heal. I know it will take a long time but I will get there. I would like to thank Ria and the Gazette for a really well written article and paticularly for raising awareness of a terrible silent disease which could be so easily "prevented" or treated in early stages to avoid all this suffering.
Pips
Wasgymgirl, BLACKPOOL says...
10:28pm Fri 15 May 09
Can we all get together and sneeze in Parliament! Sort of germ warfare!
if were not a threat after 4 weeks of anti biotics,maybe we should all go give blood!
Wonder what they would say to that.
Horrid thing is some who have no clue they have lyme maybe doing just that.
I know I very nearly did.
if were not a threat after 4 weeks of anti biotics,maybe we should all go give blood!
Wonder what they would say to that.
Horrid thing is some who have no clue they have lyme maybe doing just that.
I know I very nearly did.
DenHeslop, Fordham Heath says...
12:13pm Sat 16 May 09
May I first thank all those who responded to this article. Although I am not altogether surprised to see that many local Lyme Disease patients are also struggling with the same issues and having to battle with the NHS, I do believe that we are only seeing the tip of an iceberg here in Essex. In an effort to acquire a more accurate profile of the overall problem, Lyme Appeal are going to carry out an online survey of UK residents who have been affected by the disease and how, or if, they have received any treatment. I feel that Essex is a good place to begin so, would be extremely grateful if those local patients (and others from the UK) who responded to this article would contact me in confidence via the “contact” button on the LymeAppeal.org website. Again, thanks for your valued support.
leonardessex, london says...
8:29pm Wed 27 May 09
I didnt even know Lyme existed until my girlfriend in USA began to get concerned about my long term poor health and started to ask me questions. She had Lymes 15 yrs ago.. and my list of crazy symptoms matched hers identically almost.
Im feeling totally wrecked after 10 yrs of pain /shivvers/ tinitus etc.
My GP was dismissive and so now Im looking for assistance/ guidance as to my next move.
Previous stories are daunting.
Leo essex uk
Im feeling totally wrecked after 10 yrs of pain /shivvers/ tinitus etc.
My GP was dismissive and so now Im looking for assistance/ guidance as to my next move.
Previous stories are daunting.
Leo essex uk
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Ria Heslop, Colchester says...
1:25pm Wed 6 May 09
I also wish to add the following…… An illness that would have cost less than £100 with a few weeks of an oral antibiotic treatment, if my Lyme Disease was diagnosed in the outset , has now run in to tens of thousands of pounds mostly all at my own expense.
Due to the fact that my disease has been left to decline neurologically to such an extent by the UK NHS, in addition to personally funding IV Antibiotics, I am now having to self fund Neurologists, Scans, Anti-seizure medication, Consultants fee’s, Private Nursing Care, visits to the USA for specialist treatment and now Blood Tests (which Colchester PCT recently withdrew 5 days ago after I went public). As you can see from the photo I also have an Ocular Palsy in addition to many other Neurological symptoms, but still the NHS refuse to help me.
Again, this is all so very wrong as I am obviously the result of a failed and broken NHS system but now find myself having to pay for all my own treatment.
To stop others going through the same as myself, PLEASE ensure you make people aware of Lyme Disease and its potentially devastating effects.
Ria Heslop