If you suffer from Lyme disease (or any tick-borne infection), or are a family member, friend, or carer who would like to show your support please add a short comment in the comments section under this post - stand up and be counted and let's show the politicians and other officials at the meeting how many of us wish we could be there to show our support physically, but are are doing so by adding our names here.
We hope the comments section can serve as a kind of extended petition. So please keep comments to only a few lines - comments will be visible to anyone who accesses the site, so please avoid adding personal information.
We suggest:
- name
- location (not address: e.g. "London")
- length of illness
- if/when/where you were treated
- how long treatment took/ is ongoing
- costs (i.e. did NHS help? Did you have to pay privately?)
- Link to any blog/ article you have written or been featured in
These are simply suggestions, you may wish only to add your name, or you may have something additional to share - but we would like to keep the comments here relatively brief.
For sharing a more detailed experience, please click on the "Share My Story" tab at the top. Please feel free to do both!
Thank you!
I was bitten in Guildford whilst walking the dog in the woods by my house 2003 and again 2005 had the classic Bulls eye rash and summer flu', struggled with a variety of symptoms and was not diagnosed with Lyme Disease until 2007. It has taken years of antibiotics to claw my way back to good health. I was retired early from the Civil Service on the grounds of ill health due to my disabilities, now much recovered I have no pain or disability and live a normal life. Details of my story are on my blog http://lookingatlyme.blogspot.co.uk/
ReplyDeleteI have found that there are hundreds in UK who have similar experiences to me and most make some improvements with longer treatments on antibiotics. This is ignored by our NHS.
I live in Nottinghamshire and was bitten on the side of my hand while walking my dogs through Felley Woods near Underwood in May 2008. I developed a typical bullseye rash and started to get a stiff neck, visual disturbances, unexplained fatigue, muscular pains (sometimes migrating) and joint aches. Nobody recognised what I had, including me and the GP and subsequently, I was diagnosed with 'Chronic Fatigue Syndrome' in January 2009. I can no longer work, my social life is seriously limited and I can no longer enjoy the hobbies and activities I used to love to partake in. I did get a referral over a year later by another gP who took on board my suspicions but the Infectious Diseases consultant disregarded my symptoms and history, choosing to rely on the negative result of the notoriously inaccurate Elisa test instead. In fact, I was told, there is NO Lyme Disease in Nottinghamshire! Since then I have tried private treatments but nothing has helped - I left it too long. http://acrobatichamster.blogspot.co.uk is my blog charting my journey with Chronic Lyme Disease if you wish to know more and for those who assume CLD does not even exist, may you too get bitten by a tick, infected with LD and co-infections and then get wrongly diagnosed and left untreated! Let's see you deny it then!
ReplyDelete1995; NHS diagnosis: "Encephalitis". Overnight Neuroborreliosis stopped me from working as a studio potter, teaching private classes, socialising, having quality time with my 3 adult children, keeping very fit, and all previous enjoyable activities..... I can't even concentrate for long enough to read a book. I'm just above survival level; have to live on State Aid, with my family paying for minimal abx treatments with lots of supplements. (They can't afford full treatment) I have long since spent all my savings and borrowed money in (a) trying to find out what was really wrong with me (b) natural treatments to relieve some of the worst symptoms. 2005 Private Blood Microscopy positive for Borreliosis, plus 4 co-infections. 8 years ABX plus many Supplements; eventual improvement starting this year 2014. As I was somewhat better (not feeling half dead all the time) I stopped treatment throughout the Summer, but symptoms are returning. I am cheerful by nature but without enough funds for successful treatments this disease is a daily endurance battle. It can't be cost effective that instead of correctly diagnosing and providing effective treatment at onset, to have many thousands of very ill patients being treated for symptoms only, using multiple health resources, leaning on their families, when we want to be the useful members of society we were before Neuroborreliosis/ Lyme.
ReplyDeleteHubby was bitten, we believe, whilst on a motorcycling tour of Colorado, Wyoming and Montana in 2003. He had a strange fungal-like rash at the time followed on our return to the UK by a few days of a fluey-type illness but it was never followed up by the GP. Within a couple of months of our return to the UK, he became very withdrawn and sleepy to the point that he was coming home from work at lunchtime as he was unable to concentrate. He was a design engineer for a technology company and his work was to very fine tolerances. He was sent by our GP to the local sleep centre who diagnosed Narcolepsy and put him on very strong drugs to keep him awake. These did not work and made him worse than ever and he began to collapse regularly, always falling backwards and badly injuring himself on many occasions. He was banned from driving due to his sleepiness which made him severely depressed. After a few months this diagnosis was then changed to depression instead of Narcolepsy and received yet more tablets. He was sent to an eminent psychologist who then sent him to a Neurologist who diagnosed Lewy Body Dementia and yet more tablets. This diagnosis was changed to conversion disorder and yet more psychological therapy to no avail. His sleepiness continued over the period of 10 years with the final diagnosis of FrontoTemporal Dementia after a lengthy psychological test which remained until earlier this year when in desperation we consulted a private clinic for environmental diseases. He tested positive for lyme disease relating back to our trip in 2003 whilst we were in Montana and embarked on intensive therapy with intravenous antibiotics at a huge cost to us (we spent almost £10,000 in 4 months) but with remarkable improvement in his balance, his speech and cognition. He needs further treatment in the way of oxygen as his tissue oxygen levels are extremely low which is the cause of his fatigue, sleepiness and collapses. This had never been tested or explained until we went to the private clinic and it all now fits into place. Once again the oxygen therapy is going to cost a lot of money (around £800) and there are no guarantees that it will work but we have to try. The fact that my husband has not received any treatment for his lyme on the NHS is extremely frustrating. He is a born and bred UK citizen, has always worked long hours and paid his taxes and yet when he needs medical help the most it is not available to him. It seems that the medical profession 'close ranks' when it comes to treating lyme disease and would rather turn a patient away than risk their careers. Surely lyme disease patients need medical help and that is what the NHS was devised for. It is beyond comprehension that the medical profession are 'not allowed' to actively treat a patient for lyme disease unless the tick is still in the body or the patient has the typical bullseye rash (only 30% of patients actually experience this). I need my husband back and our grandchildren need to meet their REAL granddad. With the help of the correct treatment by the NHS, this would be possible for so many more patients and will in fact save the NHS money in the long run as most of the patients will fully recover therefore not need further treatment. If left untreated, their condition will deteriorate and cost the NHS considerably more money to treat.
ReplyDeleteI was bitten while out walking near Guildford in 2004. Denied treatment by NHS despite classic bullseye rash and symptoms. Spent 2 years and £4000 for private tests and treatment, and my insurance company spent a further £5000 fixing health problems caused by the Lyme disease. I'm not completely better, I've lost my mind. I used to be a software engineer in space science. I've heard of so many people with cases like mine, left until it's too late to fully recover. It really is time the NHS woke up and acknowledged that patients with lyme disease need the correct treatment.
ReplyDeleteHi there have been a number of cases of people infected in and around Guildford 3 of my near neighbours all infected, sadly only one of the 4 of us was treated adequately in the early stages and remained well, his wife was a nurse who did her research and persuaded doctors to treat even though they first said he could not have lyme as he hadn't been to New Forest or Richmond Park! The lack of doctor knowledge is a disgrace and costing patients their lives but NHS lots of money that could have been avoided.
DeleteI have been sick since childhood and despite my parents best efforts, no diagnosis from NHS. Managed to get to uni and work, paid all my taxes and NI contributions for many years and then eventually collapsed in 1998..sharp decline since that time, chronic unremitting insomnia...zero interest from NHS for this, debilitating indescribable fatigue, which I was diagnosed with chronic fatigue syndrome for and sent to a NHS cfs clinic and given leaflets on how to manage being tired! By this point I had lost my career, my partner had left me, I had miscarried all my children and was virtually homeless through having spent every last penny determining by private means that my thyroid and adrenals had packed up, had ongoing pernicious anaemia, severe gastric problems, insomnia non stop, as said and headaches that make me feel as if my head is being severed...NHS really want to push me down the psychological route and seem happy to give anti depressants, but im not depressed, just want my life back and go on contributing to society ..I cannot wash, cook, dress , my memory is next to zero..finally went private at the environmental clinic in uk and tested posititve for western Blot Lyme Disease...15 years wasted of my life so far and goodness knows if I will ever recover, completely housebound and feel like the NHS has completely let me down...all my symptoms pointed to this years ago but its easier to turn blind eye...THERE IS NO MONEY IN CURES ! Big pharma control everything, and cost so Lyme Patients are left to die....they don't even have to pay for our burial..win win for them! I have lost just about everything through the NHS misdiagnostics....very very sick now and just no hope with no cash to pay for treatment...would work if I could but cant walk or remember anything...I live in Gloucester and am 48 years old now....please NHS stop following America/Canada on this...please treat us............
ReplyDeleteI have been working with Lyme support groups Tick Talk Ireland, BADA & Lyme Research UK & found that over the years patients are repeatedly being ignored or offered very limited treatment. If Lyme disease was limited to one part of the body a simple course of treatment may be fine but we know that the Lyme causing bacteria (borrelia) disseminates quickly to organs, tissue, joints & even the brain, eyes & spinal chord in some patients. Patients regularly need ongoing care & symptom management but they also need open minded practitioners who can see past the the view of Lyme being so simple to treat, because basically it isn't. If you look at studies on persistence, difficulties in testing & morphology of the bacteria it will become evident that this is a complex disease requiring various methods of treatment. I hope that patient's voices can be heard & that a more open minded approach does start to take effect as soon as possible. This article written by an Associate Professor of Microbiology sums it all up for us: 'Lyme is most misunderstood disease since AIDS' http://www.poughkeepsiejournal.com/story/opinion/columnists/2014/11/08/columns-ahern-lyme-legislation/18729327/
ReplyDeleteI wish to highlight the serious failings of lyme care within the NHS.
ReplyDeleteI was bitten by a tick in Scotland in August 2013. I had the classic EM rash, it took 9 medical appointments for it to be confirmed as lyme disease. Dermatologists, rheumatologists and GP did not recognise it, and the EM rash was confirmed only by skin biopsy four months after the bite. My ELISA and Western Blots were positive.
Despite me being a very clearcut case, my Infectious Diseases Consultant was basing the treatment plan on personal opinion rather than the evidence or clinical presentation. And her opinion was really outdated and some of her comments are laughable. Yet she is the expert.
The current treatment approach for lyme disease in the UK is woefully inadequate. The Infectious Diseases Consultants are the key 'experts' and others look to them for advice. They seem to be very poorly aware of lyme disease, and are advising using wrong information which has serious implications. Basing their treatment approach on a “Position Statement’ rather than clinical guidelines is the key problem and is totally unacceptable. This needs to change.
I was bitten in 2008 on back of my hand whilst on a fishing trip at Scalby Beck,i had the classic Bullseye Rash,asked my rheumatologist to test me for Lyme disease and was laughed at,i was told by my then Rheumatologist that Lyme disease DID NOT EXIST in these parts(North Yorkshire) I was discharged shortly after the Lyme Test and told that my test was Negative,I DID NOT have access to any test results at that time and DID NOT WITNESS any test results, My then Rheumatologist told me to"Go Off and have a normal Life" I was disgusted by my then rheumatologist's remarks!! Since being bitten in 2010 and having the bullseye rash my Health has rapidly deteriorated from me being a very active, fit, agile Individual, to becoming Immobile and spending most of my life being Housebound(that is apart from attending appointments.I requested another test for Lyme disease in January 2014 at my G.P. Surgery, my test was Positive and I was prescribed 1 month of Doxycycline(Anti-Biotics) I was told by my G.P. after I had finished the course of Doxycycline that I Would No Longer have Lyme Disease and not to worry?For the past 11 months since taking the doxycycline I have been more or less left to just get on with the suffering of this terrible debilitating disease, i have had no help offered to myself from any G.P's or any other member of the NHS, It is only through finding the Lyme disease Support Group that I have actually found any information regarding Lyme disease and further testing/treatment etc. I am totally disgusted in the fact that I am the one whom has to educate my G.P. Re: Lyme disease!! My main concern is the Lack of knowledge and information Re: Lyme Disease Testing and its Co-Infections in the UK, It is a constant Battle to Attain any Help or Treatment in this country, and When We DO Actually receive any Help or Treatment It Is Sadly Too Late for most of us whom are suffering from this Disease, as the disease has already taken Hold on our Systems and has already Caused Serious Long Term Damage to our Systems and our Bodies Internally and Externally. This Country and the rest of the World needs to Explore and Seek and Determine Assistance and Help and Treatment and Knowledge Re: this Terrible Disease before It is TOO LATE and becomes a Pandemic!! We ARE the Sufferers HERE, and WE are the people who NEED to be ASKED How this terrible Disease has Debilitated ALL of our Lives and Existence! Please, Ask US, the People. What WE Need, We Sufferers are at Your Mercy for our ONLY Chance of any kind of SURVIVAL! Thankyou for taking the Time to read this.
ReplyDeleteNot sure where I was infected, possibly Bradford - on Avon or in Suffolk. I did not become ill until a chest infection must have lowered my immune function enough for Borrelia to proliferate.
ReplyDeleteOver the next months and years 30+ varied and painful symptoms plus altered states of consciousness, and other Neuro symptoms.
NHS diagnosis was Hypothyroidism and Post viral fatigue, then ME.
A Neurologist poked me with a hat pin, hit my knee with a hammer; asked no questions. Said there was nothing wrong with me. I left, wondering how much he was paid for that 5 minutes.
I have not asked for NHS tests as I never saw a tick on me & tests are highly inaccurate.
Over a ten year period, each of 3 blood microscopy tests at different facilities show Borreliosis and other opportunistic/co-infections.
One day, for 8 hours, I had a partially paralysed face combined with clinical depression.(It has never happened again, but has left that part of my face numb.) The following week I told a GP. It was a short consultation, about 3 minutes. He asked no questions, offered no explanation, gave me a scrip for anti-depressants even though I was not depressed. I could only shake my head at the scrip. He shouted at me very loudly. At some point he changed my notes from ME to CFS without any consultation. I found out about it years later when he sent some Medical Students to interview me. As I have neither anxiety or depression they realised their time had been wasted.
Neuro-Borreliosis has caused me great hardship and misery; loss of the job I loved; forced to downsize outside my familiar area far away from friends and family. Apart from essential shopping & medical consultations I am housebound. It's grim.
This story is about my dear friend sharon and our journey together to find out what was wrong with her. Sharon was bitten by a tick in 2006. But, during a school trip to wicken fen cambs she was bitten on the arm by a horsefly! She immediately reacted badly to the bite and was given anti-histamine on site. From then onward she spiralled down hill. Once a happy energetic person became a shadow of her former self. A person who could run for miles in our school mascot costume of sherbert the hedgehog, a person who played hockey at a high level, a
ReplyDeletekind caring no smoking no drinking person began getting whooshing sounds in her head. She constantly felt nauseous, dizzy and all manner of strange symptoms. Her gp recommended an mri but as lyme sufferers know nothing was seen. Sharon wears hearing aids due to measles as a child, so the symptoms were then blamed on this fact. Vestibular tests showed slow movement over the temporal lobes of her brain, but the report said it wasnt significant. The neurologists we saw did the reflex tests and we were told again there was nothing wrong. Migraine aura was suggested so many times that i really had to bite my tongue, as a migraine sufferer myself i knew it wasnt the reason sharon was ill. Sharons symptoms were increasing, cognitive problems, balance problems, she had problems putting sentences together. Bowel problems the list was becoming longer and longer.
We returned to a gp at our local doctors. I suggested lyme disease, but was told you couldnt get lyme from a tick...i knew you could because of all the research i had been doing. I insisted on a lyme test...which obviously came back negative because the test is not comprehensive enough. By this point sharon was in denile as so may professionals had to her nothing was wrong.
Eventually we went together to see dr munroe at the breakspear clinic in hemel hempstead. For the first time someone was listening someone understood someone knew all about lyme. Sharon paid alot money for private tests which were sent all over the world. In sept of this year we sat listening to dr munroe on the phone confirming sharon has chronic lyme disease! I burst into tears...i knew all long thats what was wrong. We have always joked between us that if i was right sharon said she would never hear the end of it!!!! What a relief to finally know...poor sharon went into shock. So now she is paying for treatment herself! Its not cheap! She is herxing due to the medication breaking down the bacteria in her poor body, and suffering even more at the moment.
This poor lady has suffered far too long. Lack of ignorance by the nhs has caused her unnecessary suffering. Please please this dreadful delibertating disease need exposing to the world.
I went to every appointment with my friend because she is too ill to understand and take in all the information.
I dont want anybody to suffer like she has....sp please listen to our voices.
I have been intermittently ill since 1989, and permanently ill and housebound since 2013 when I collapsed with a suspected stroke and now experience absence episodes with paralysis and inability to speak and seizures along with a very long list of other symptoms which affect my ability to care for myself and live normally.
ReplyDeleteI have been diagnosed by the NHS with ME and mental illness even though I had a positive Lyme Disease Elisa test on the NHS. Through my families generosity I afforded Lyme testing with Igenex in America which came back positive and has enabled me to fundraise to afford private treatment in the USA. So far it has cost over £20,000 and I am only at the very start of treatment which could go on for many years followed by a lifetime of maintenance to avoid relapse.
I share my story and journey on my website and various social media to try to raise awareness so that people may learn about the seriousness of contracting Lyme & co and protect themselves from going through the same awful things that I have had to endure. I feel compelled to do this as there are no government public awareness campaigns to warn people of the dangers of Lyme Disease.
http://lauralyme.wix.com/fundraiser#!lyme-disease-awareness/ck32
www.facebook.com/lauralymefundraiser
http://lauralymefundraiser.tumblr.com
www.youcaring.com/medical-fundraiser/a-lyme-disease-treatment-fundraiser-lauralyme-fundraiser/130771
My son was diagnosed just over 5 years ago, when he was 11 years old. It took the NHS several weeks to work out what was wrong with him, when he came down with flu-like symptoms, pains in his head & chest, bell's palsy & left-sided weakness of his limbs; & they finally took bloods, which confirmed Lyme (we never saw a tick or rash).
ReplyDeleteHe was treated with 3 weeks of abx & made a 99% recovery - he still gets the occasional sharp pain in his head & his smile is not 100% symmetrical. He was & is still an extremely athletic boy, who enjoys sport.
More recently, at the end of August 2013, I found that I had a large bullseye rash on my leg & went straight to my GP. I was given anti-histamine cream & a 2 week course of abx immediately, as the practice nurse & my GP agreed that it was obviously Lyme.
Unfortunately the lab decided not to test my sample, as they too agreed that it was obviously Lyme, with the description of the rash.
1 week after the abx course had finished, I started getting tingling in my lip & had a tooth ache, which developed over the course of 2 days, into a mild case of Bell's Palsy. I also started getting chest & head pains; dizziness; tingling in my left arm; severe pain in my right hip; and extreme tiredness.
My GP prescribed me with anti-virals & steroids; and suggested I take another 3 weeks of abx and pain-killers.
Bloods were taken again, but these came back clear.
I then had an ECG and a chest x-ray in the November, as I was still short of breath; but nothing sinister found.
The doctor then referred me to ENT in December, as my voice went husky, but again nothing amiss after looking down my throat.
Most worrying was been the floaters & flashing lights that I started to experience 3 days before Xmas. I went to my Optician on the Friday after Boxing Day & was told to go to A&E immediately. The eye clinic at the hospital confirmed what she was seeing - extreme bleeding in my left eye. I was booked in for an eye angiogram the following Thursday and had lots of blood taken again.
When I went back for my follow up appointment 2 weeks later, the consultant said I am a "Medical Curiosity"; my bloods had come back clear of all horrible diseases & illnesses (including Lyme). I was shown the photos of my eye, which you could clearly see bleeding & also blockages, but no inflammation.He then look at my eyes again & couldn't believe it, but the bleeding was clearing up - so more photos taken!
I was still getting the pains in my head & in my eyes sometimes, with a constant headache just above my eyes, tingling in my face - which sometimes spread to parts of the right-hand side, dizziness, shortness of breath, tiredness; & the eye floaters & flashing. I had no treatment, other than taking pain-killers.
In the April of 2014, I saw a Neurologist, who said I do not have Lyme Disease & that there are no ticks carrying Lyme in Devon - all I had were migraines!!!- he prescibed anti-depressants for the head & eye pains, but I struggled to lead any sort of life on them, as it was all a blur!
This was a turning point in my treatment - I decided to try going wheat free, which helps my joints & self-medicate with Allicin & other natural remedies.
I also suffer with an underactive thyroid & had my gallbladder removed a few years ago....
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ReplyDeleteIt appears to me that the initial problems are threefold. Awareness, testing and diagnosis, and unfortunately all 3 are flawed. The patient’s first contact regarding their Lyme disease is normally their GP. And GPs, usually know very little about Lyme disease. In fact some GPs believe that Lyme does not even exist in the UK, which is totally incorrect.
ReplyDeleteThe GP will typically order the appropriate blood test(s). If that comes back positive then the patient may be prescribed antibiotics and if they are given at the correct dose for long enough the patient will hopefully recover.
The real issue is when the test comes back negative. A negative result means the patient will be told that they don’t have Lyme disease. If they are then referred on to an infectious diseases consultant, the consultant will again back up the diagnosis because of the blood test.
But these serological tests are far from perfect and a high proportion of positive cases can be missed. This is because these tests look for antibodies to the Lyme bacteria, which many chronically ill patients do not produce. There are many medical papers and reports documenting this. Despite having negative tests, there are patients who improve or recover when taking antibiotics. So how can this be?
In Australia, one GP became sick and tired of negative tests and his patients suffering and sought alternative testing. When they came back positive he started treating with antibiotics. He now has over 300 patients with chronic Lyme, all have tested positive using alternative tests to the antibody test used in the UK. He even has a small quantity of patients previously diagnosed with Motor Neurone disease, MS, and Parkinson’s disease. All are being treated with antibiotics and all are in various stages of recovery. So how can this be if the tests are reliable.
And the real tragedy of course is that people are walking out of our doctor’s offices with a missed diagnosis. These people are not just a name and a number on a spread sheet but real people. Human beings, people who could potentially be facing a life of utter misery, pain and suffering. In the worst cases they could be being told that their conditions are or all in their mind and indeed many are.
So better awareness, a complete overhaul of the tests, earlier diagnosis and appropriate treatment is what’s needed. And we don’t need it next year or next month, we need it now.
I live in Dorset and I have been sick on and off for the past 14 years following a tick bite in Asia. I was misdiagnosed with ME, fibromyalgia and a wide range of psychiatric conditions for which treatment brought no relief. Eventually, after experiencing terrifying seizure like episodes, I consulted a private doctor in the US who specialises in chronic, complex illnesses. I was diagnosed with Lyme disease and a host of different co-infections, hormonal abnormalities and various toxicities.
ReplyDeleteWhen I returned to my NHS doctor with my diagnoses from America, they were dismissed and instead I was offered a leaflet on 'Beating the Blues'. My American doctor offered to liaise with my GP and involve my GP in his treatment plan but this offer was refused. Thanks to this private care funded by my parents, I am now slowly regaining my health.
Lyme disease has stolen more than a decade of my life. I am unable to work or socialise properly and I am completely dependent on my parents at a time when I should be enjoying financial independence. Money needs to be poured into research, better testing needs to be developed and doctors need to be educated on how to diagnose and treat tick-borne infections so that more people don't have to endure the same nightmare as me.
Currently the NHS is seriously failing their patients infected with Lyme Disease, but this situation can change if government bodies listen to those they have failed & work together to effect change.
ReplyDeleteI was infected as a teenager in a deer park in Cheshire during the 1970s & had classic erythema migrans rashes. I had always been an active person who was very fit, but over the next two decades my health gradually declined. By 1993 I was no longer well enough to work, & later received a diagnosis of ME/CFS.
Several years later an NHS consultant I had been referred to recognised my symptoms, & the tell-tale description of the erythema migrans rash, & I was subsequently diagnosed with Lyme Disease. I was offered hospital admission & treatment with IV antibiotics under his care. This would have been an NHS hospital over a hundred miles from my home, but despite the distance I indicated to all concerned with my medical care that I was more than willing to do this. However, funding was not made available & no appropriate Lyme Disease treatment offered.
Consequently I continued to deteriorate. For the past six years I have rarely been able to leave my home. I am frequently bedfast & rely on others for my basic care. I live daily with exhaustion, neurological problems, muscle spasms & severe intractable pain. There is no escape from this daily misery. Pain medications have very little impact, despite nearly twenty years of intervention from a pain consultant.
For twenty two years I have been unable to work so have to rely on state benefits for my income. I can no longer visit my GP or attend hospital appointments as I am too ill to travel & sit in waiting rooms. So help has to come to me, which means I have to pay privately. To date treatment, care, & the discrepancy between lost earnings & benefits received, has cost me in the region of £500,000, & this assuming no professional advancement. More than this I have lost my career, my hobbies, my friends & the life I knew.
The potential severity of Lyme Disease needs to be recognised & treatments implemented as soon as possible. The current situation makes no sense on any level. Leaving aside the personal tragedy of unremitting severe illness & disability, the failure to treat has economic consequences.
My degree & professional qualification were attained using public funds, yet I only had the opportunity to use them for ten years. I was working as a professional in a public service that, for a number of years, has had to resort to recruiting staff from abroad due to shortages of suitable UK applicants, so it makes no sense to lose a valuable member to a treatable illness.
During the past twenty two years I have cost the UK money in welfare benefits as I have been too unwell to work or care for myself. Not only could treatment have avoided this, but I would also be making a direct contribution via tax & national insurance contributions, & an indirect contribution to the economy due to a higher disposable income & spending power.
I truly cannot understand how it serves anybody to leave treatable infections untreated & hope that this situation will be remedied as a matter of urgency.
My symptoms started 3 weeks after my holiday where i was bitten alot by various flyong insects but not by a tick. No rash.
ReplyDelete10 weeks on here is a list of my symptoms :
Headache daily - not like a normal headache
Stabs in head and neck
Vision problems
Blurry vision/ green spots
Dizziness
Ear ache
Lost half of hearing in right ear
Distorted sounds in right ear
Feeling of not being real or in a dream
Memory issues
Say the wrong things
Cant follow a conversation
Brain fog
Sore throat
Intermittant swollen glands under arm and in neck
Back ache
Muscle aches and pain
Joint pains mainly foot and hips and back
Non stop eye lid twitching
Muscle twitches
Involuntary movement of fingers
Hit flushes
Intermittant low grade temperature
Abdominal pains
Heart palpitations
Pain in heart with every beat
Pains in chest
Pain lower left chest under ribs spleen?
After 10 weeks of severe symptoms and being dismissed by the nhs with a migraine and going A&E twice/ seeing my gp 15 times I sent my bloods to germany. Came back with borderline lymes antibodies and a mycoplasma and coxsackie active infections. Also a high white blood cell count which indicated infection.
When i finally changed gp he immediately admitted me to hospital on two occasions. Only to say your bloods are normal. Lol
i finally got to see an infectious disease specialist through the nhs after seeing a neurologist. He sent me to the liverpool school of tropical medicine.
It was pointless. I Showed the "professor" my results from germany he dismissed them and said that just means youve had those infections in the past. Half the population would have the same results.
Just manage your symptoms and get on with your life its unlikely to be an infection . What an utter joke. He was basically saying its in my head and i have anxiety. He was my last hope - the best specialist in infections just sent me on my way with no tests....
I was fit and worked out a lot before all of this and now at the age of 25 my life has been taken in 3 months.
I have no help at all from the NHS and have been off work. With no diagnosis from the nhs i will likely be sacked.
I have been on doxycycline for 5 weeks which i found myself with some improvement in joints but my neuro problems are horrible.
I am left to source antibiotics from abroad which in fairness could turn out to be anything but i have to risk it thanks to our NHS.
I really need IV antibiotics but il never get it. There are only a couple of lyme literate drs in the uk and they will rarely treat due to the fact they could go to court. What a great system we have over here. We are left to just fade away. Wheres the research? Wheres the treatment? Wheres the diagnosis? This disease has been around for decades!!!
Good luck to anyone in my situation. You will need it
I was bitten by a tick 27 years ago and developed a viral like illness and a bulls-eye rash about a week or 2 later. I went to my GP and he sent off an anti-body test which came back negative (I now know that it was probably too soon for my body to have developed the antibodies). No treatment was offered because of the negative test.
ReplyDeleteI started to "collect" symptoms over the following years. Neck and back pain, frequent migraines and headaches, crippling fatigue, sinus problems, digestive problems, bladder problems, arthritis. These all became much worse around 7 years after the initial tick bite at which time I was diagnosed with fibromyalgia. 3 years after this, following extensive research, I started to suspect strongly that it was linked to my tick bite and requested another lyme disease test from my GP. This came back positive for antibodies. However, another test was done which was an IGG immunoblot and this was negative. Again no treatment was offered.
Over the last 23 years, I have had several blood tests which have always shown elevated white cell counts (Neutrophils, Lymphocytes, Monocytes & Eosinophils all elevated). This was investigated by Hematology by a bone-marrow biopsy, this test was normal and no explanation has even been found for these abnormal blood tests.
Now I have begun to get worsening and new symptoms (including recurring salivary gland swelling and infections). I am currently being screened for an auto-immune disease, Sjogren's. Latest blood tests are now showing abnormal in other areas too.
I truly believe that the source of my health problems are Lyme disease but I face the same brick wall that we all do - unreliable tests and no viable treatments even if we do test positive.
It is hard to explain just how debilitating and devastating this infection can be and we are left little hope for any treatment. It is heart-breaking! Please help us.