Lyme disease is still widely misunderstood by the medical profession. Through our awareness work, it is our wish that people are diagnosed more quickly so that they don’t miss the crucial window for early treatment but so many members of our Online Community have suffered for years on end, often feeling alone and crazy before discovering that there are thousands of us who have been treated the same way by the medical profession. Lyme can be invisible in the sense that it doesn’t always show up on tests and scans and so people are driven to their wits’ end, questioning their sanity.
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‘It took me 2 years. I read about a doctor in the Daily Mail who helped someone with Lyme disease to get better. I had very similar symptoms. I tracked him down. He arranged for an IGeneX test and it came back positive for Lyme. Unfortunately, his treatment plan didn’t help me get better but I knew what I was dealing with. As you know, following a diagnosis is when the real work begins and 10 years later, it is still continuing.’
‘I am still waiting. I was bitten in Africa at the end of August 2000, yet Lyme was not considered. I had a rash and then Bell’s palsy roughly six weeks later. Then, I was hospitalised with suspected carditis in December 2000 and put on IV antibiotics. I was then diagnosed with ME followed by fibromyalgia in early 2001.’
‘I know I have Lyme or coinfections – probably Bartonella based on my symptoms but the NHS does not test for this coinfection, so I have hit a wall.’
‘It took me 5.5 years – between gastroenterologist appointments and doing my own research, I finally decided to get tested for Lyme disease. It was my answer and I made the decision to travel abroad for treatment. It’s still a tough road and a constant battle for remission.’
‘It took 7 years and a private, unequivocal test from ArminLabs. This followed two negative NHS Lyme tests, a lumbar puncture, and in case of narcolepsy, a full-blown sleep study as well as incorrect diagnoses of chronic fatigue syndrome, idiopathic hyposomnia and nickel toxicity.’
‘I was given a chronic fatigue syndrome diagnosis after 9 months by the NHS. All of my symptoms were put down to that. It took me another year to find 3 strains of Lyme, Babesia M, Bartonella H, atrichia and CPN/Mycoplasma P. All private tests from various labs – IGeneX, BCA Lab, ArminLabs and Immunoscience. They can’t all be wrong! My NHS test was negative. It was seeing John Caudwell on the TV mentioning symptoms that prompted me towards thinking that’s what was wrong with me.’
‘I first became aware of Lyme when an A&E doctor suspected it in 2013 but my test came back negative. I continued to have progressive symptoms and in 2016 my GP tested me again sending my bloods to Porton Down this time. The results came back positive for Anaplasma and my GP then referred me to an Infectious Diseases doctor who retested my blood. This time I tested positive for Anaplasma but I also had a positive Western Blot test for Lyme disease. I was told that it was a false positive and I was only treated with 10 days of doxycycline for the Anaplasma. Then, in July 2017, I was bitten again and this time I had a clear EM rash. My Infectious Diseases doctor wrote to my GP saying ‘she has a bullseye lesion on her lower leg but it’s very unlikely to be caused by a Lyme infection’ and discharged me. My GPs took all the dismissive advice from the Infectious Diseases doctor and treated me like a complete hypochondriac until I finally went to a private Lyme doctor who diagnosed me straightaway from my history and NHS positive results. Now my GPs and specialist have accepted that I have been suffering from Lyme disease and Anaplasma since 2012.’
‘I got a tick bite on my leg 3 weeks ago. I was sitting in my back garden. When the tick was on my leg I flicked it off. At the time I didn’t realise it was a tick. It was a small creature and I had not seen one like it before. I recognised the mark on my leg left by the tick which was a raised inflamed circle with a blister like centre and an outer circle. During the evening and following two days my leg did feel uncomfortable, I felt hot and had headaches, which I don’t normally suffer from. I was also sick two days afterwards. I went to my pharmacist 3 days after the bite which is within my surgery. I showed the pharmacist the bite on my leg and I said it’s not getting better. He thought it was a tick bite and said to see the doctor to get it confirmed. Amazingly I went to the receptionist and she got me an appointment within 40 minutes. The doctor showed me pictures of ticks on her screen. She looked at my bite and was convinced it was a tick bite. She explained that ticks can be anywhere, not just in fields or woods. I was given doxycycline for 3 weeks and told to go back if I had any problems. The doctor asked if I had any pets. I have a cat who is regularly given flea and tick treatment every month. My partner who visits with his labrador has now got his dog a tick collar. Thank goodness my doctor recognised the symptoms and put me on antibiotics so quickly. Apart from occasional headaches, I am feeling ok and hopefully will not have any long-term problems.’
‘It took 1 year despite my GP seeing my bull’s-eye rash and my description of flu-like symptoms.’
‘I only discovered this May, that all of my health problems were due to a tick bite in 1989 when I was at Camp America in Michigan.’
‘My bull’s-eye rash was misdiagnosed as ringworm. I had fevers, joint pain, hallucinations, fatigue and headaches a week after the rash appeared. The dots were never connected.’
‘My young brother’s death the following year impaired my GP’s judgment of any subsequent symptoms.’
‘Over the years I have had internal and external tremors, facial twitching, migratory joint pain, carpal tunnel syndrome, fatigue, insomnia, vocal paralysis, whooping-cough type gasp, abdominal pain, bladder problems, air hunger, neck pain, headaches, ear ache, constantly changing voice, heart pain, caffeine intolerance, hearing hypersensitivity, blurred and double vision, labyrinthitis, scoliosis of the spine, numbness and pins and needles in hands and feet. I’m only half way through so I’ll stop.’
‘I received a diagnosis for Lyme disease and 8 coinfections this June from ArminLabs. My NHS test was negative for Lyme disease.’
‘I have managed to have a successful career as curricular leader of technologies in a high school, l have three wonderful children and keep up my fitness, even taking part in the European masters synchronised swimming 10 years ago (I originally had to stop training when I was 21 after my visit to summer camp) None of this has been easy but I even started doubting myself and looked into yoga and mindfulness but the pain never stopped, I just got used to it.’
‘I am lucky as I have enjoyed so many events in my life and have a fantastic husband and amazing parents. I have had severe symptoms since January and been off of work since May. I intend to return to work in August and to get well now that I know what I am fighting.’
‘My sanity since my test results has been kept intact by the amazing people on the Facebook groups and I cannot thank you all enough for your support, kindness and advice.’
‘17 years post-bite I fell more severely ill and then took 3.5 years to be diagnosed.’
‘More than 35 years for me, only after being tested privately in January this year. My son paid £5,000 for me to go to a private hospital in London and after numerous tests and a CT scan, an MRI scan, blood tests, and a 24 hr heart monitor test, I still had to ask them to test for Lyme as I’d had an idea for some time that this was my problem. I had to pay extra for that. 35 miserable, painful years of being told I was depressed! YES of course I was depressed because I was so ill!’
‘I have still not been diagnosed by the NHS. They won’t accept my ArminLabs results from 2017 but they can’t give me an answer to my symptoms.’
‘9 years. It was in 2016 and more of a self-diagnosis after piecing everything together and finding Lyme Disease UK’s Online Community. My NHS GP agreed it was ‘probably Lyme’ after he looked at my history and saw the positive IgG result. He apologised to me for all the mistreatment/misdiagnoses but he wouldn’t go on record to say so and then he retired.’
I went to a Lyme doctor in 2017 and she got me started on treatment straight away. My entire twenties were marred by this illness – our situations are heart-breaking on so many levels… right down to the fact that all this trauma we’ve experienced (and continue to do so) was/is completely avoidable.’
‘17 years and my GP and 3 Infectious Diseases doctors did not accept my results from US and German labs.’
‘It took 6.5 years to get a diagnosis due to my own efforts and research and insisting on a Western blot test. During this period, so much NHS time and money was wasted on me. Years of seeing a variety of consultants, then unnecessary surgery for removal of a parathyroid gland, plus all the hours wasted meeting with my GP and being tested for MS etc. What a crazy world we live in that is SO wasteful, when this money could go into effective Lyme research. By the way, I am self-treating with herbs and homeopathic remedies as I feel that pharmaceuticals only make the situation worse.’
‘It has taken 2 years of hell to diagnose my husband, Stephen. Sadly, the NHS have left it too late….and only recently we’ve had to really fight to get him some treatment when he was found unconscious. He is now blind, unable to walk, and currently bedridden, we have hope though thanks to LDUK!’
‘Possibly 40 years. They think I may have been born with it.’
‘2-3 months after the bite (but there is some debate as to whether it was a second bite). I was diagnosed by an NHS neurologist, although I saw him privately. I deteriorated fast. It was first thought I might have labyrinthitis and then MS, but it took a week for my neurologist to diagnose me with Lyme.’
‘It took me over a decade and I consulted over 40 doctors before being diagnosed with Lyme disease.’
‘Mum and I reckon I’ve had Lyme since I was 9, so that’s 25 years before I connected the dots. I was diagnosed with chronic fatigue syndrome, fibromyalgia, IBS and I had a negative NHS Lyme test. However, I had a positive ArminLabs result and a bioresonance reading. My daughter also tests positive on the bioresonance machine for all the same strains as me. She has symptoms and so I’m pretty sure I’ve passed this on to her.’
‘32 years.’
‘30 years.’
‘I had to go to America to receive a diagnosis.’
‘For myself, it’s taken 56 years and for my daughter, it’s taken 12 years. Since diagnosis we have had two and half years of treatment, including antibiotics, herbals and stem cell therapy. I had to sell my home to pay for it all. We are both still ill. I’m full time career for my daughter. So much unnecessary suffering. I can’t even put it into words. If only we hadn’t been misdiagnosed for so long’
‘Left to rot as far as the NHS are concerned. Heartbroken.’
‘I have had 9 years of misdiagnosis and being called crazy. It all took its toll, not just emotionally but physically. Doctors questioned my sanity; my family and friends questioned my sanity and that in turn makes you wonder if they are right. Deep down knowing how poorly you feel but being unable to explain the sheer pain you are feeling is incredibly difficult. Hiding behind a broken smile so people don’t share with you their harsh judgements they felt about you and your health. Knowing if they did, it would break your heart a little too much for you to be able to mend. I am lucky, I have a supportive family who were able to help me access private testing aboard which finally got me the Lyme disease diagnosis. Without this I am sure I would still be called a ‘drama queen,’ ‘attention seeker,’ and by now I would probably be sectioned. I only just escaped being sectioned when I was first diagnosed a year ago. It was easier to call me crazy because I was too complex for doctors to really understand and know what was going on with me. ‘
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It is so hard to read the harrowing stories of misdiagnosis which we read about frequently in our Online Community. Thank you to all who found the courage to share these stories and experiences because this blog captures the trauma people go through when trying to get to the bottom of their illness. For outsiders looking in, if this doesn’t show what a heart-breaking, complex and painful disease this is, I really don’t know what will.
Thank you and we fight on!
Sophie Ward