My journey with Lyme Disease started in the summer of 2015, when I was bitten by a tick whilst in Scotland. Up until that point I was a healthy and happy twenty-four-year-old, working full-time and preparing to go back to university in the autumn, studying Post-Graduate Law. I became unwell very suddenly; one day I was perfectly normal, and the next morning I woke up feeling terrible and very strange, it was hard to explain but I just felt nothing like my usual self. Literally overnight I developed severe vertigo and dizziness, every time I sat or stood up I felt as if I was going to faint, and I was struggling to walk because everything around me would feel like it was spinning. This in turn was causing me to experience terrible nausea, and I was having heart palpitations which were so bad they were waking me in the night. I found this all to be really quite unnerving, so after a couple of days of no improvement, I booked an appointment with my GP. She thought I likely had some kind of virus and signed me off work, telling me to rest for a few days until I felt better. This seemed perfectly reasonable, so I went home and waited to recover – except I didn’t.
Over the next few weeks I deteriorated quickly. The vertigo, fainting and nausea got worse, and new symptoms were popping up every day. I suddenly became unable to eat anything, to such an extreme that by the time I had moved down to London at the end of September, I had developed over 80 food-allergies and was vomiting between 5-7 times a day because I couldn’t keep anything down. I was extremely scared, stressed, and upset, but all the blood tests the doctors ran were coming back normal, I was being referred for further testing at the hospital, and I just kept expecting to wake up one day and feel better. I started back at University in September, unable to attend classes but studying by watching the online lectures from home, and tried to get settled into living in London. It was very frustrating as I wanted to be out and about at Uni and seeing friends, but I couldn’t get on the underground or even leave the house most days. By this point I was in the doctors several times a week and not really getting anywhere. I started being told that I was probably stressed, and that anxiety was the possible cause of all of my symptoms. I was definitely feeling anxious, but I knew that this was being caused by my physical symptoms, not the other way round! However, I didn’t have much else to go on, and was still getting worse by the week, so I started seeing a hypnotherapist and cognitive behavioural therapist, as the NHS had stated there was nothing more they could do for me without a diagnosis.
Unfortunately, although I strongly believe these kinds of therapies are very beneficial for the right conditions, none of my physical symptoms improved. I was now sleeping for at least 16 hours a day, and by November I had to defer my course as I was so sick I couldn’t keep up with any work. I spent the first half of 2016 split between being in bed and in and out of hospitals and doctors’ offices, seeing numerous private doctors and practitioners, and did invasive test after invasive test, everything coming back inconclusive. Finally, in April 2016 I was diagnosed with a small intestine bacterial infection and Mast Cell Activation Disorder, which seemed to explain why I was so allergic to all foods, and the cyclical vomiting I was still experiencing every single day. I was so relieved to have found out what was wrong, and after a course of antibiotics and starting on new medications I started having some symptom improvement and relatively better days. I got married in September 2016 and was able to go on my honeymoon to Italy and Greece. I was still struggling, but feeling better than I had done in over a year and I felt hope that I was finally starting to get back on track and recover.
However, when I returned to London I majorly crashed, with new and extremely scary neurological symptoms appearing. I suddenly stopped being able to read or write, I was struggling to maintain conversations, my face was numb and dropped on one side, and I was now down to being able to tolerate only five foods. I was bedridden for months on end, my whole body was covered in unexplained bruising and I was absolutely terrified. I was very fortunate that my family did not give up on me and my husband pushed me to see one more specialist to see if there was anything that could have been missed. I did every test recommended, and in January 2017, 18 months after becoming sick, I tested positive for Neurological Lyme Disease and several Lyme co-infections. I was also diagnosed with Postural orthostatic tachycardia syndrome (POTS), which further explained my blood pressure, fainting and heart issues. I couldn’t believe it, right when I first became unwell I had read a book about someone who suffered from Lyme Disease and had never once considered that I might have the disease too. I knew so little about Lyme, I didn’t even realise that you could get it in the UK, and my naïve understanding was that the symptoms were usually limited to joint pain and fatigue. I was amazed when I got home and onto google, to discover that not only had I been living in a high-risk Lyme area, but that every one of my symptoms was a match for the disease. I felt numb, I was so grateful to finally have a root cause diagnosis which explained everything, to have a reason for why I was so sick, and to know that it wasn’t just anxiety or ‘all in my mind’. But my relief at a diagnosis quickly turned to fear, as I learned that there was no quick fix for Chronic Lyme, and because of the length of time I had gone undiagnosed, I would likely be facing a long journey of treatment, which often makes sufferers feel worse before getting better. The NHS does not recognise Chronic Lyme or offer the necessary amount of treatment, prescribing only a 2 week course of antibiotics which for me made absolutely no difference. If the disease is diagnosed immediately after a patient has been bitten, then a short course of antibiotics works as a cure in the majority of cases, but once the disease is chronic, patients need many months or even years of antibiotics to achieve a state of remission (there is currently no cure for Chronic Lyme Disease).
I started private treatment, taking 60 pills a day to target the infections, alongside a herbal protocol to repair my gut and boost my immune system. The side effects made me feel terrible, but I persevered as I was so determined to feel better, and I did slowly start seeing improvements in some symptoms, which motivated me to keep going. In July 2017 I started treatment with a new clinic in London that specialises in Lyme Disease and started a new protocol along with IV therapies, which worked by delivering high doses of vitamins and amino acids directly into the blood stream, allowing me to absorb much needed nutrients. Through this I saw incredible progress with my food allergies, and being able to eat a range of foods again, especially fruits and vegetables has been completely life-changing, along with the vast improvements in my Cyclical Vomiting Syndrome, which had controlled my life for the past two years. As my low blood pressure, dizziness and fainting episodes also improved, I started being able to get out and about more and travel on public transport. I am still under the care of my wonderful practitioner at this clinic, and I am immensely grateful to have this excellent support, which most patients in the UK sadly do not have access to.
Although I was ecstatic at such a huge improvement in some of my worst symptoms and thus my quality of life, as the two-year anniversary of being bitten passed, I unfortunately started to notice new symptoms creeping in and deterioration of a lot of my neurological function. I was still unable to read or write and was having a lot more confusion and loss of motor function – I had quite a few accidents cutting myself with chopping knives, and was constantly walking into doors & furniture around the house. My fatigue was also getting worse along with my joint pain, and noise hypersensitivity made it very painful to be in public places, or even to have the radio or TV on at home. Whilst I still believed in my treatment plan, I started to worry about whether it would be able to keep up with the rate of progression of the disease, as although lots of my original symptoms that had been targeted had improved, increase in others meant that most days I was not really feeling a lot better at all. I decided to look at more intensive treatment options abroad, where medical professionals are more aware of the complexities of Chronic Lyme, and I started to think about getting Stem Cell Therapy after speaking to other Lyme patients who had managed to recover with this approach. After getting the worst virus I have ever had at the start of 2018, which had me in and out of hospital again for a month, with the support of my Lyme practitioner in London, I made the decision to book for Stem Cells in the US. In May, I was incredibly fortunate to be able to travel to California to attend the Infusio Clinic, where i spent three weeks getting treatment before undergoing the Stem Cell procedure. The time I spent at Infusio was an unbelievable experience and one that I will be forever grateful for. It’s hard to explain what it felt like to finally be looked after by a medical team who had so much experience treating Lyme, and after years of being told there was nothing wrong with me, followed by then having to be my own health advocate and constantly organising my own treatment and fighting to get help, to be able to finally put trust into doctors and a plan designed specifically to get me better. It was hugely emotional to let go of this burden and start to believe that it will be possible for me to heal, and I believe that this shift was a key moment in the start of my recovery.
The first 100 days after getting Stem Cells are critical for the cell replication, and expected to be very up and down in terms of symptoms and inflammation. I definitely had some of the toughest months of my entire health journey during this time, but I started to see some promising improvements as well. My neurological function especially has improved hugely; I am now able to read and write every day which is unbelievable progress, and with improved energy, allergies and heart function I was able to travel for a two-week holiday where I was doing things I haven’t been able to do in years. I still have a very long way to go, the healing process from stem cells is a year to 15 months long, and I have just gone through another week of treatment in LA at the end of September, which has once again been tough on my body and caused symptoms to flare and increased fatigue. I am also still doing treatment at home as directed by my US doctor, to support and continue the process of recovery. However, for the first time in a long time I am cautiously hopeful and have started to visualise a brighter future with a better quality of life. I have really struggled to come to terms with my illness, as it’s just not the life I envisioned myself having at 27 years old, but I have come a long way in starting to accept that my life might look different to how I expected, but that doesn’t mean I won’t be able to overcome challenges and have a worthwhile and meaningful life regardless.
Although my journey has been incredibly difficult, I am constantly grateful that I am actually one of the lucky Lyme sufferers, as I have been able to access and afford the treatment which I so desperately needed. Lots of sufferers aren’t even able to get a diagnosis, as their GP won’t think to test them for Lyme, or they get a false negative test result, so I am extremely fortunate that my tests came back positive and that I had a practitioner who suspected Lyme in the first place. Although I wasn’t diagnosed until 18 months after falling sick, many sufferers wait far longer. I have met several Lyme patients who went undiagnosed and sick for decades, and some who had been misdiagnosed with other conditions such as Multiple Sclerosis, Alzheimer’s, Arthritis and Motor Neurone Disease. Sadly, most NHS GP’s have very little knowledge or experience with patients with Chronic Lyme as they are not given the appropriate training, and it is very difficult to pick up on, as each tick bite is unique and the symptoms can often mimic other conditions. The ignorance within the NHS is truly shocking, to the extent that I recently had one (very lovely) GP tell me that she actually knew all about Lyme Disease – from watching Yolanda Hadid on the Real Housewives of Beverly Hills. Although I truly believe any awareness is good awareness & the publicity Yolanda has raised through her story is incredible, the fact that doctors are learning more about the disease from reality television than from within the healthcare system is seriously concerning. Even for those who get diagnosed, the NHS treatment of one course of antibiotics is highly inadequate for most with Chronic Lyme, and patients who do not recover are regularly told that there is nothing more that can be done for them. This is heart-breaking and incredibly dangerous for the patient, as the longer the infection is left untreated the more deterioration the body will experience.
Lyme can attack every organ in the body, and for me personally has damaged my brain, heart, gut, kidneys, liver, adrenals and thyroid. In all I have suffered with over 100 symptoms from Lyme and I dread to think where I would be now without the extensive treatment I have received. Sadly, private treatment is normally required long-term for lots of patients and is hugely expensive. I am so incredibly fortunate to have had the financial support of my family, who have done everything they can to get me better, but the fact is the vast majority of people cannot afford years of multiple treatment rounds that cost tens of thousands of pounds each time. In addition, patients have to fund required supportive therapies – physiotherapy, osteopathy, acupuncture, neurological retraining, appointments with dieticians & nutritionists, all alongside supplements & medications which often have to be shipped from overseas. This absolutely must change, as so many are suffering with no hope of improvement and in fear for their lives. It can be very isolating to suffer from a chronic disease, and feeling like the health system, which is meant to help you has given up on you, is incredibly frightening and distressing.
As Lyme Disease is highly preventable, and in most cases easily cured if detected and treated in the early stages, awareness of how and where you can get bitten and how to avoid it, is key to ensuring more people do not suffer unnecessarily. Lyme Disease is very much present in the UK, especially in certain areas with long grass or next to water. Lots of people are surprised when I tell them that many people have been bitten and infected in Richmond Park, so please be aware that ticks really can be anywhere. They can be sometimes easily noticeable, but equally some are so small that you would not spot them, or they could bite you on the back of your leg for example, which might not be visible to you. The best thing to do after being outside, is to check for any ticks, and if think you may have been bitten, go to the GP and request a Lyme Test. Although you shouldn’t panic, as most ticks do not carry Lyme, – it’s just better to be safe than sorry. Some tick bites cause a quite distinctive ‘bulls eye rash’ that can act as a key warning sign, but it is important to note that an estimated 30% of bites do not cause this, so the absence of a rash does not necessarily mean you have not been infected. In my case, I suffer from Psoriasis which was covering my body at the time I was bitten, so I did not realise anything out of the ordinary, so you can see that sometimes circumstances mean it is not obvious. Early signs and symptoms of Lyme can include fever, joint ache, fatigue and headaches, and if you continue to notice symptoms after obtaining a negative Lyme test, it is important to push for further testing and diagnostics. It would mean so much to me if you could share this information of what to look out for with friends and family, as if even one person is saved having to go through suffering from Chronic Lyme Disease then it will have been worth sharing my story.