Morgan-Hayley Bell shares her story about her harrowing experience of Lyme disease and the struggles she faced in receiving a diagnosis and treatment.
Unexplained symptoms
By early 2025, I was ready to resign from my job in London and move back to my parents home in Scotland. After nearly a year off sick, it did not look like I was ever going to be well enough to work again. I decided that if I ever got better, then I would share my story in hopes that it might be helpful (and hopeful) to others in similar circumstances.
2024 was the crux in which my unexplained illness finally came to a head. By August 2024, I was physically and neurologically incapable of living my life in the way that I always had. I had gone from someone who had suffered with a bit of neuropathic pain in my limbs and lower back to someone who had rapidly dropped weight, had significantly altered motor, cognitive and organ function and was unable to think, speak or walk properly. Most critically, no doctor knew how to fix me – never mind restore me to some state of normality.
My story really began over the Christmas period in 2021, when overnight, I experienced sudden neuropathic burning and tingling in my limbs, weakness and sciatica-like back pain. I saw various doctors in 2022 who could not explain my symptoms. Fibromyalgia was mentioned but never diagnosed. I was still able to work but constantly plagued with burning, tingling and fatigue which affected my life on a daily basis. My symptoms suddenly escalated in late 2023. I could barely sit down from the back pain and had weakness, tingling and neuropathy on the left side of my body. I also had intermittent spells of crushing chest pain, heart palpitations, severe fatigue and insomnia. For some reason, all my symptoms worsened at night.
Neurological symptoms escalate
I was signed off work for the first few months of 2024, hoping that I would improve with rest and physio. By Spring 2024, the burning had worsened and worryingly, I developed numbness and tingling in parts of my lower body combined with weight loss. A neurosurgeon suggested an MRI scan of my brain and spine, although he deemed my symptoms to be very unusual. Following my MRI scan, the tingling heightened to electric shock like pain and I became numb in most of my lower body. I could not feel my legs or saddle area properly and wobbled when I
walked. I was admitted to A and E for suspected onset of Cauda Equina Syndrome but proved negative for all tests.
Doctors in hospital remained perplexed by my symptoms and advised me to take more time off work. I refused and returned to work then took a music group from America on an 8 day tour of London and Scotland. Throughout the tour, I felt like I was living in another person’s body and fighting to stay on top of my symptoms. I noticed that my cognitive function had declined significantly and I awoke each morning exhausted, in pain and filled with dread and worry that I had forgotten to relay whole segments of information to the group. I had never suffered with
anxiety or forgetfulness before and could not fathom why I felt in such a dissociated state. I put it down to the stress and uncertainty of my situation and carried on.
I worsened as the weeks and months progressed. I had near fainting episodes, overheating and freezing cold body temperatures, gut issues, intermittent facial palsies with involuntary closing eyelids, limb tremors on the left side of my body and the numbness and burning grew worse. I developed severe allergies to foods that I had eaten my whole life and continued to rapidly lose weight. Some days, my fatigue was so overwhelming and my limbs so weak, that my legs would give way and I would wake up in the hallway or kitchen floor hours later. I noticed that I
constantly worried about being forgetful, such as not closing a window or remembering to turn off the cooker – which was very unlike my usual personality.
Struggling with day-to-day life
Despite these debilitating episodes, I pushed myself to still work every day. I constantly fell asleep on the train and concerned passengers would often wake me up (as I looked like I was unconscious). I strived to maintain as normal a life as possible but knew that I was not making improvements, and was very troubled to be living in a body and mind that I did not recognise. It was acknowledged by doctors that I had some sort of reaction to my third Pfizer vaccine in Christmas 2021, which caused the initial symptoms but no medical professional could explain why I was drastically worse. Theories of past traumatic injuries, adverse reactions to painkillers, supplements and even a contraceptive pill were discussed but did not add up. I was booked in for another MRI scan in mid August for further investigation.
Doctors did not recognise Lyme disease symptoms
I recall my arm burning throughout my MRI scan. Afterwards, everything escalated. My body temperature went from extreme hot to extreme cold with overwhelming neuropathic burning. I experienced full body shaking and I could not control my arms or legs due to the tremors. By that evening, I was unable to sit upright or even take myself to the bathroom properly. As frightening as it was, I could not fathom what was happening to me. Each time that I stood up, I fell over. I could barely feel my legs and they were too weak to coordinate the act of walking. I remember falling down a flight of stairs and I managed to phone my parents in Scotland – apparently not much of what I said made sense other than it was a distressing phone call. My family travelled to London and my weight had dropped from 68kg to 55.7kg.
I was admitted to A and E and once again, doctors were concerned about my obvious deterioration, but no one knew how to help me. Theories of degenerative nerve and autoimmune diseases were ruled out as I proved negative for all tests. Doctors remained worried about my spine due to the obvious loss of feeling in my lower body but suspected arachnoiditis from my MRI scans did not fit the symptoms that I presented either. NHS doctors suggested that many patients had suffered from FND (Functional Neurological Disorder) following either Covid infections or the vaccination. I dismissed this theory as my symptoms had become dramatically worse in April and in August with no explanation as to why.
Loss of independence as symptoms take over
My parents had to care for me for months. Some symptoms improved, others got worse. I lost feeling from the neck down on the left side of my body and walked with a slight drag of my left leg. Some days, I could not use my hands properly. My speech was much slower and at times, I needed a family member to attend doctor’s appointments for support. The burning and tremors continued with weakness, muscle wasting, chest pain and I could barely eat due to severe reactions to food that induced bouts of anaphylaxis and SIBO type symptoms. Some days, I had to sit on the floor to eat, as holding myself upright in a chair was physically impossible.
Much of my time was spent asleep due to the overwhelming fatigue. I developed strange rashes, skin lesions and my ears rang with tinnitus. I looked like I had aged by over ten years – I was so thin and worn out. Visual disturbances, horrible vivid nightmares, irritable bladder, intolerance to noise, endocrine issues, PoTS symptoms, and electric and stabbing pains in my limbs and head were common place. I always felt freezing cold and my body temperature read 34.9 degrees at lowest and rarely increased over 35.5 degrees.
Most alarming was my cognitive decline. I saw various specialists and recall seeing a neuro-immunologist and struggling to remember basic information such as friends names and next of kin details. Afterwards, I wondered if this was the onset of early-stage dementia, despite only being in my thirties. It scared me that my usual sharp memory was failing and struggling so much. I convinced myself that I simply needed to re-train my brain with neural exercises. Having studied languages, I thought that language lessons and reading French and German books would help but it was no use – I simply could not absorb information. I was too fatigued to focus and
usually fell asleep in the middle of reading. I was not sure if I would ever regain the ‘old me’ or become functional again.
Mast cell reactions identified
Eventually, a clever doctor recognised that my symptoms were caused by a condition called Mast Cell Activation Syndrome (MCAS). All of my symptoms seemed to relate to reactions from vaccines, medication and most recently, the gadolinium contrast used in my MRI scans. In her words, I might as well have been injected with snake venom, such is the devastating effect on the immune system.
I researched and found a news article dated from 2018, writing about patients who had been left hospitalised and fighting for their lives following severe reactions to gadolinium contrast. I realised that there were a significant number of people like me and I found a specialist doctor who treated patients with severe reactions to contrast. Gena Norris, the wife of the actor, Chuck Norris, suffered a similar debilitating reaction. The Norrises spent over $1m on private treatment and filed a lawsuit against the medical clinic who administered the contrast.
I was admitted to the toxicology department at St Thomas’s hospital in London for tests which confirmed that even months after my last MRI, I had retained extremely high levels of gadolinium. The toxicologist was sympathetic but could not advocate treatment or chelation as it was too risky. He also thought that some of my symptoms were not completely synonymous with other patients he had seen and stressed that there must be a root cause or underlying condition, possibly related to the MCAS.
Searching for the root cause
I considered the toxicologist’s words regarding the root cause. I had made significant improvement with treatment from the specialists who diagnosed me. On my good days, I could push myself to manage some ‘normal things’ like a short walk or an outing, or to see a visitor. Even trying a very basic yoga class was good progression but my cognitive function was still impaired and I would relapse with the same symptoms for days afterwards. I read more about MCAS.
The doctor who diagnosed me asked about previous tick bites in my initial consultation but my memory was too impaired to remember any specific bites. My mother then reminded me of a tick bite that I had the year before. She still had a photo of the tick which I sent her at the time. In hindsight, it seems obvious now. I was bitten by a poppy seed sized nymph tick in the summer of 2023 and took a trip to Austria, where I spent two weeks in the countryside, walking and horse riding.
I consider myself more savvy than most when it comes to awareness of tick-borne infections due to my upbringing in Scotland and spending so much of my life in the countryside and doing outdoor pursuits. Furthermore, I know a few people who have Lyme disease but I never pieced my own symptoms together. I remembered that I did not remove the tick successfully nor did I know how long it was attached to me for. I realise now that my symptoms developed only weeks after the bite and continued to escalate for months thereafter.
Limitations of Lyme disease tests
I knew how difficult it is to diagnose Lyme and tick-borne infections. The standard tests have poor sensitivity and specificity. I saw two infectious disease doctors and one tick-borne disease expert. I carried out four separate tests due to my scepticism about the reliability. The NHS test came back negative but flagged a co-infection (yet this was noted as insignificant). Other tests including western blots tested for other strains of borrelia and were IgM positive for a particular pathogen most commonly found in Central Europe, (borrelia garinii) and the same co-infection. This is the likely cause as to why my peripheral nervous system was so greatly affected with tingling and numbness, amongst my other strange autoimmune like symptoms.
Earlier undiagnosed Lyme disease
I have had numerous tick bites over the years and it was deduced that I had reactivations from a latent infection and never knew it. Between 2010 – 2014, I lived in Germany and Austria and in hindsight, I presented textbook symptoms of neurological Lyme, which likely started as a summer flu. It then mimicked various conditions (such as thyrotoxicosis, fatigue and shin splints) over a prolonged period and baffled doctors. When I lived in Austria, I had scans of my heart, thyroid and abdomen due to the severity of my symptoms as well as extensive blood tests.
My blood results confirmed an infection and some unusual markers such as raised lymphocytes, liver enzymes, TSH, inflammation and depleted mineral and vitamin levels but doctors were unsure as to the root cause. I also developed a classic erythema migrans bullseye rash on my left thigh, which my Austrian flat mate pointed out that it looked like a tick bite but I did not seek the correct medical treatment. Ironically, I was prescribed several courses of antibiotics by doctors over 18 months to treat these unknown, recurrent infections. I can only assume that this unwittingly helped treat the Lyme but did not completely eradicate it.
Specialist doctors told me that it is a bit of a chicken and the egg situation. MCAS is very common in Lyme patients and it is difficult to know exactly when I contracted Lyme and how well my immune system fought it. The initial infection could have resulted in the MCAS or the active bacteria from the tick bite in 2023, triggered a reactivation and exacerbated the MCAS.
Finding a way forward
Finding a way forward without making myself more unwell was a challenge. No doctor could wholly explain why my symptoms escalated greatly after the MRI contrast. It could have been a severe allergic reaction, or the contrast induced such oxidative stress to my already dysregulated immune system in a perfect storm scenario. I have since read various medical articles that suggest patients who are already fighting an underlying condition, can have their symptoms greatly amplified when injected with contrast.
It was a relief to understand the whole picture and gave me encouragement to narrow down potential treatments. I watched a short documentary with Gena and Chuck Norris which revealed that she used hyperbaric oxygen to heal herself. I wondered if she also had MCAS or a tick-borne illness. I read various articles and medical journals from American and German doctors who recommended treating both MCAS and Lyme through hyperbaric oxygen, (as Lyme is an anaerobic bacteria, which is inhibited by oxygen) and oxygen also stabilises degranulated mast cells. Other doctors whom I saw, recommended HBO for a variety of illnesses. I decided that I had nothing to lose.
Significant improvement and returning to work
I signed up for an initial course of twenty HBO sessions at the start of 2025. The effect was so intense during the first session, that I nearly fell asleep. Afterwards, I experienced chronic fatigue and flares of symptoms such as burning, numbness, tingling, tremors and tinnitus that lasted for days. At first, I was only able to tolerate one session per week but was not deterred by the side effects, as I was informed by the staff at the HBO chamber that this is common.
I eventually increased my sessions to three times per week and very slowly, I began to feel significant improvement. Eventually, I was able to walk the distance from the train station to the therapy centre, which I could not manage before. More notably, I had more energy and was more alert. My symptoms started to subside, especially the brain fog and chronic fatigue, and I did not spend half the day asleep. I began to regain weight and was able to take the dog for long walks. I returned to work in April 2025 on reduced hours and by the end of summer, the burning and numbness in my lower body had resolved, along with other ailments such as rashes, lesions, heart palpitations and limb weakness, which seemed miraculous.
The impact of limited medical awareness
There is now so much information in the media regarding Lyme and MCAS – particularly from those in the public eye who have shared their experience. I have read many stories from those who have suffered for years without a diagnosis, who have been continuously misdiagnosed or worse – gaslit, by medical professionals. Fortunately, doctors did not take that approach with me or tell me that my illness was psychosomatic (as my symptoms were so sudden and so severely debilitating). However, I know all too well how many specialist doctors (all the ‘ists’), I saw before finding the right doctor who knew the root cause of my illness. Far too many sufferers have been left financially gutted in hopes to find a cure and sadly, many friendships and relationships are unable to withstand the strain of such a complex illness.
I know Lyme disease affects each person individually and until last year, I had never experienced such an incapacitating physical and neurological shutdown. When I lived overseas, my symptoms were minimal compared to what I experienced in 2024. Until last year, I had always been able to work and maintain an active life. Maintaining fitness, being outdoors and having a social life were always the key to me feeling better, even if I did not understand why I had these odd bouts of pain and illness. To be rendered immobile in a body that seemed broken had a devastating impact on my personal life and career. I am lucky to have good friends and family for support, plus I have made new friends and connections who all have a similar story to mine and helped me navigate treatment.
Ongoing symptoms and treatment
During my HBO sessions, I read actress Miranda Hart’s book on her struggle with the effects of Lyme disease and years of misdiagnosis. So many of the symptoms rang home and I was curious about her approach on neuroplasticity and retraining the brain. Combined with my current protocol, I am currently taking steps to learn about limbic re-training and a course by Annie Hopper on her DNRS programme, which has huge success with sufferers of Lyme, MCAS and other chronic conditions.
I still have some symptoms – especially fatigue and a very low tolerance to sound. I have only been able to listen to music again very recently. I remain on a strict protocol of high potency supplements, anti-microbials and a high fat, low oxalate and keto based diet, but I am now well enough that I have some foods that I enjoy in small amounts. I continue to undertake HBO once or twice a week. I consider myself as ‘in remission.’ I do not think that I will ever be completely symptom free and still have off days. However, I am so much better now than in 2021 and beginning to live my life again.
I have been able to go for small hill walks with the family dog – which I have been unable to do for four years. I have been able to return to swimming and start a fitness routine again. I hope to get back on a horse soon – something which I have not been able to do for over two years and which would have been physically impossible, six months ago. It has been a long and costly road and I am fortunate that my immune system was strong enough to eventually pull me out of this rut. Naturally, I have worries about being bitten again, given how much time that I spend in the outdoors but I can only do my best to avoid it.
Our health is our wealth
I hope that my story may provide some food for thought to those who have hit a brick wall with medical professionals and do not know which course of action to take. The last 18 months have been very isolating but also given me much to reflect on my life, (including who and what is important to me). Our health is our wealth – we are nothing without it and life is short.
I now take medical advice with great reverence and never wholly trust one professional opinion – no matter how well intended. I will never receive contrast again and I take my time to realistically risk assess what might work for once person, might not work for me. I also know when to say no and try to avoid any situations that may trigger a flare.
I appreciate that there is ‘no one size fits all approach’ and what has worked for me, might not work for others. However, for anyone who is considering trying hyperbaric oxygen, it could be the difference between re-claiming a better version of your life or continuing to exist in a state of debilitating illness. For me, HBO was truly like the Lazarus effect and has enabled me to live in my own body again.
source: https://lymediseaseuk.com/my-lyme-story-morgan-hayley-bell/
(C) Lyme Borreliosis Foundation
