I just don’t know how long I have had Lyme for – it could be 3 years, it could be since childhood. But I do know that I have had it for at least 3 years because in summer 2014 my first food intolerances started with gluten. This gluten intolerance became more and more severe over the years, to the point where if I had a trace of gluten I would be bed ridden for days with stomach pain and brain fog that lasted for a week after. In 2015, a well respected NHS gastroenterologist told me it was likely I had coeliac disease, even though the tests were coming out negative, but at the time it was the only thing that made sense. He performed a colonoscopy due to elevated faecal calprotectin but didn’t find anything.
2015 was a very busy and stressful year – I had a new job and was doing financial qualifications in my spare time; I was gymming 3-5 times a week, trying to keep up with a busy social life that involved drinking most weekends. What I noticed in this year was that my immune system was extremely weak – I had a sore throat which came on every few days or anytime I drank any alcohol and I would feel like I had the flu every so often but with no signs of a runny nose or cough. I was also extremely fatigued but put that down to working so hard. I would wake up every Saturday morning feeling hungover when I hadn’t even drank and I survived on Berocca and caffeine. I also became increasingly intolerant to alcohol and would get heart palpitations and hangovers that would last days. I could only drink prosecco and had to stop drinking all spirits or I’d be ill for days after.
2016 is when things really went downhill. I would feel as if I had been “glutened” when I was sure I hadn’t eaten any. I had huge issues with my stomach by the middle of the year – I had to live with Pepto Bismol. I would take tactical annual leave whenever I knew I had a big night on a weekend coming up so I had more time to recover. I was so weak and exhausted and I started having panic attacks frequently. I went to so many doctors and was told I was stressed, a hypochondriac, that there was nothing wrong with me – the stomach issues were IBS from stress. I then had an endoscopy and nothing was found. I had an ear, nose and throat appointment with a specialist and the doctor couldn’t work out why my throat was so inflamed but said it was clearly some sort of immune response. I was desperate to keep my life together but it was crumbling so I sought help from The London Clinic of Nutrition (which specialise in chronic illness and stomach issues). At the same time as I was waiting for an appointment, in August 2016, I crashed and didn’t recover and had to stop working. It felt like a severe flu – I was dizzy, weak and nauseated to the point I felt like I would want to collapse when I stood up and my throat was so sore. Things only got worse from here and I had multiple trips to A&E for various episodes of feeling like I was dying. I was not digesting food and lost a lot of weight in a short space of time (about 10kg in 3 months). As time went on, I developed other more serious neurological symptoms which would come and go at random which I explain below.
The London Clinic of Nutrition worked with me to unpeel layers of what was going on. I had a parasite (dientamoeba fragilis), candida overgrowth, SIBO and H-Pylori in my stomach. I was low on a lot of vitamins and minerals (things the NHS did not pick up because to them I was low but “in range”). My red blood cell count was low and the size of my red blood cells was high – an indicator of anaemia. I had thyroid antibodies indicating Hashimoto’s disease and my thyroid levels were low – again, something the NHS didn’t pick up because I was low but “in range”. I spent a long time thinking it was just Hashimoto’s until Oliver at The London Clinic of Nutrition said that my symptoms were not adding up to only that. They did a virus panel test on me by Armin and found I had multiple active viruses including Epstein Barr, Cytomegalovirus and Coxsackie which brought up the suspicion of Lyme as these are common in conjunction with Lyme, as the immune system is so burdened it can no longer keep them dormant. I also had a Dutch Complete hormone test and all my sex hormones were out of whack and my cortisol was running high through the whole day, indicating my adrenals were stressed.
I had a Lyme and co-infections test with Armin Labs in Germany, organised through the London Clinic of Nutrition. Oliver (the practitioner I was seeing) thought my symptoms could either add up to Lyme or mould disease, but I didn’t think that the latter was likely. My test came back positive for Lyme and co-infections and I had a low CD57 count and high CD3 as shown below. It is worth noting that no test is 100% accurate for Lyme disease and it has to be clinic diagnosis. Oliver said he thought due to all my symptoms, it was likely I had Lyme and he could treat me for this herbally, but now I had answers I wanted medical treatment and I was aware that there were options abroad I needed to research. I had been treating herbally already and been on the Autoimmune Paleo Diet for months and felt like I had made very little progress and the costs were adding up with the ever growing list of supplements. I then found Infusio and it seemed like the best option – treating with cell therapy.
Although this is an invisible illness, here is a picture of me before going to Infusio – not looking good!
Fatigue, brain fog and depersonalisation
The fatigue was endless and unrelenting every day. My whole brain was fatigued. The only way I can describe it is like having the worst hangover on 2 hours sleep because it isn’t just fatigue – it is a sort of extreme fog, sleepy feeling and you also feel nauseous because you are so tired that you actually want to throw up. And there is brain fog with the fatigue. It is like a heavy feeling in your head where you simply can’t muster the thoughts and words you are looking for, which means having conversations becomes hard because you suddenly realise you aren’t listening to what someone is saying and can’t think of a certain word, so end up stumbling and stuttering. I started feeling like I didn’t have any interesting thoughts anymore. It doesn’t help that all you can think to say is how ill you feel because that is pretty much 90% of the thoughts you have that day.
I had vivid dreams and nightmares, if I could even get to sleep in the first place. And when I woke up, as soon as my brain became conscious again I began to assess everything I was feeling in my body – I would have increased physical symptoms that hit me – tingling sensations, shooting feelings, headaches, hot and cold prickles, nausea – and the only escape was to get up and shake it off, but at the same time you don’t want to move. Insomnia as well. It really does seem to be pot luck sometimes whether I can get to sleep. I have tried everything some nights – meditation videos, mindfulness, reading, simply binge watching a whole season of planet earth in one sitting. But my brain just won’t shut off – you don’t want to think but can’t stop churning mundane thoughts round.
Vision problems and derealisation
This has been one of the scariest symptoms. It happened overnight. I woke up one day and my vision was off. I thought maybe it was a blood sugar issue from my strict diet but nothing helped. I went to the opticians and they had no idea and my eyesight was perfect. It was like the computer in my brain wouldn’t process my vision properly because nothing was wrong with my actual eyes. I felt the constant need to rub them because they just wouldn’t focus. But it wasn’t that things were blurry because I could still read things far away. I have been living in a dream like state because of my vision problems for a long time now. When I am talking to people I feel like I lose focus and I wonder if they notice.
I cannot seem to remember things that have happened. Friends remind me and I just can’t picture it. For example, I went travelling when I was 18 and can barely remember any of it. I also forget certain words and names and places a lot when talking.
Stomach Problems and food intolerances
Lots of throwing up, lots of episodes of everything I ate going straight through me, lots of pain and bloating. I developed food intolerances to more than just gluten and had to be very careful with what I ate. I felt drunk when I ate eggs. Once I ate a tomato curry and felt as if I had been poisoned – my mood immediately altered and I felt toxic and sick. Activated charcoal was helpful for this.
My throat was permanently sore for about a year. If I got too little sleep one day, my throat would swell up more. I had to gargle with TCP almost every day. If I had even one glass of wine, my throat would be sore for 2 days after.
If my throat got really sore my glands would come up too.
My skin would itch uncontrollably and keep me awake at night.
Stiff neck and migraines
Migraines started from the back of the neck and lasted all day. My neck would be stiff and painful as well. I would also get ice pick headaches where I had stabbing pains in the back of my head.
I have had tinnitus now for over 2 years and it is so so loud on the days I am feeling worse. I use it as a barometer for how ill I am feeling on a certain day.
Some days my head felt like it was going to explode. It felt like it had been put in a box which was being pressurised like on an airplane.
Thirst and dry mouth
I was always thirsty. I woke up every day with my mouth so dry.
Stiff joints and muscle pain
I would have days where my whole body would ache as if I had done a very heavy gym session or it would feel like I had pulled a muscle or injured myself. This would come on randomly with no apparent triggers.
Hot sweats in the night
Occasionally I would wake up completely drenched with my heart racing and would have to go and cool down before I could get back to sleep.
Flu like feelings
I always feel like I have the flu or a bad hangover constantly but without the snotty nose/cough.
I had pain in my bladder that came and went like a UTI and needed the toilet a lot. However, there was no evidence of a bacterial infection.
I kept hurting myself all the time by accident – banging my head, cutting myself etc. There was something every day and there were too many things for it to be coincidence.
If I didn’t eat every 2 to 3 hours my blood sugar went low and I felt dizzy and weak and horribly unwell.
Tingling feeling and numbness
This was when I knew there was something really wrong. I experienced numbness on my face and tingling feelings on my cheeks. I would also have my toes go numb. At first I thought this was because my feet were cold but I soon realised that it wasn’t that and my middle toes would randomly be numb, sometimes on both feet.
This could have been because my thyroid was low and I lost a lot of weight but I was frozen to the bone for the whole winter and would need to wear 3 jumpers to warm me up. My hands and feet could never warm up.
I got a lot of these, especially waking up in the morning. I also had a thumping heart from drinking alcohol which could last for 2-3 days.
One day I woke up and my hands weren’t working properly. My brain wasn’t sending the signal to my fingers to move and I found that I couldn’t use my phone because my thumbs weren’t pressing when I wanted them to. They would also tremor and feel very stiff.
Tolerance to stress, anxiety, panic attacks, low mood
My tolerance to stress decreased to zero and I would have panic attacks if something stressful was happening. I felt constantly anxious and overwhelmed. When I eventually stopped working I was very depressed. I soon came to realise though that this wasn’t me and it was the Lyme doing something to me. When I had a better day physically, my mood would instantly lift and I could think normally again, but when I would have a bad day I would have all these mental symptoms which came from nowhere.
Feeling dizzy, increased motion sickness and nausea
So much nausea all the time. I would get car sick after 2 minutes of being in a car, I would get train sick which is something that had never happened before and generally if I moved too much I would feel sick. If I had to go anywhere I would think about how I was going to get there because travelling places on public transport or even in a car became such a huge ordeal.
One of the earliest symptoms was alcohol intolerance. It wasn’t that I would react badly whilst drinking or change my behaviour but the HANGOVERS were like out of this world bad. One drink would leave me with the hangover of a normal person after 5 drinks.
This is also one of my earlier symptoms, but when I came off the pill I had the most extreme cystic acne I have ever experienced. I didn’t know what to do at the time so I just went back on the pill.
For many years (since I was a child) I have had OCD type symptoms where I feel there are certain pressure points on my body that itch when something works me up or I get irritated. I have to press on them or scratch them – it feels like an itch that never goes away. When I got really sick I developed more and more of these points on my body.