My Lyme story started in February 2017 when I noticed a small, black speck on the outside of my thigh. I tried to brush it off but it seemed to be attached so I pulled at it and what came away was something about the size of a pin head which, when examined with a magnifying glass, was a tick.
The Lyme question crossed my mind and I reminded myself to keep an eye on my leg for the next few weeks to make sure there was no rash, and there wasn’t, so I forgot about it.
Almost three months later, my husband noticed a large red rash on my leg. I didn’t connect it to the tick bite – it certainly didn’t look like the standard bulls-eye rash that I’d seen in illustrations and I thought that, as we were on holiday at the time, I must have been bitten by an insect. After a couple of days of it getting bigger and more spread out, my husband asked, “Wasn’t that where you had that tick on your leg?” I wasn’t sure, but we called in at the local hospital where, to my surprise, the doctor said yes, he thought it might be Lyme disease and gave my five days of doxycycline antibiotics just in case – drastically under prescribed by the way!
Our holiday continued, I felt tired, I hadn’t been well since a bout of flu the previous November followed by more strange flu-like symptoms in January and March which had left me exhausted. I’d had a sore throat on and off for months, a stiff neck and sometimes felt a bit dizzy. All symptoms that I attributed to other things. After a day or so of the antibiotics, I suddenly started to feel shaky and my right thumb developed a life of its own – it started twitching! I put it down to drinking too much coffee, so switched to decaff but that didn’t seem to make much difference. By day three of the antibiotics, I was having strange speech problems, my words didn’t seem to want to come out, it seemed as though I had to concentrate to start talking and I stuttered at the beginning of sentences. By day four of the antibiotics (the day before we came home) I had trouble walking, there seemed to be a slight delay between deciding to take a step and it actually happening, but once I got going I was fine.
For some reason, and it seems ridiculous now, but I didn’t seem to think that any of this was strange, I just plodded on not feeling particularly well.
The car journey home seemed endless, I was incredibly tired and the shakiness continued, I felt anxious but didn’t know why and it seemed impossible to calm down. When we finally arrived home I collapsed on the sofa and my body went into a type of spasm where all my limbs started shaking. My whole being felt as though it had electricity flowing through it and there was a strange, tingly sensations in my legs. The following morning, on top of everything else, I was having memory problems.
We arrived at the doctor’s surgery and my husband explained that I seemed rather unwell, listing all the symptoms which had appeared over the last few days and also that I had this red rash on my leg which might be a tick bite from almost three months ago.
The doctor took one look at my rash and seemed horrified.
I knew it was serious, “That’s definitely a tick bite,” he said. I felt shocked, I had assumed that the antibiotics would deal with it and I didn’t need to worry, but my doctor quickly informed me that I needed a much higher dose of antibiotics than I had been given at the hospital. He then checked my heart – the rate was elevated, but the rhythm normal and he then checked that my arms had some strength in them, yes I still had that. At least some parts of me were still working properly! But my nervous system was under attack by the Lyme bacteria – Borrelia.
I was quickly given prescriptions and instructions: get blood tests done, organise daily intravenous injections of antibiotics (2g per day) plus oral antibiotics (1g per day).
The daily antibiotic dose was 15 x the dose that I had been given at the hospital and I had to take it for 28 days. My doctor’s appointment was at 9am and my first intravenous injection was at 4pm the same day. My doctor prescribed the strongest treatment, but couldn’t reassure me that it would be enough to make me completely well again. We went home and I cried my heart out – how could a tiny, pin-head sized insect do so much damage?
My husband developed new powers. From time to time I had wondered what would happen if I became incapacitated for any reason and unable to do all the day to day stuff at home. My husband comes from the old school, he does building work, chops down trees and fixes cars, tractors or whatever needs fixing. He doesn’t do cooking or shopping. However, after being together for 40 years and much to my great surprise (and relief) a miracle happened – he sprang into action and cooked omelettes, other various “interesting” concoctions and could manage to find Lidl. I seemed unable to do much to help, just pottered about a bit and then became exhausted again. I don’t remember much of those 4 weeks but one thing that stood out was that I didn’t want to eat chocolate or anything sugary or drink coffee or alcohol, it was as though they had become poisonous and repulsive, my body refused to touch them.
Concerned friends wanted to come and visit but I put them off. I was in a deep, exhausting depression and just felt ill all the time.
Sometimes it felt as though I was outside myself observing my own efforts at trying to be normal… and all the time I continued to feel shaky, there were strange pains that came and went in different places, numbness with pin pricking sensations and electric shocks which would culminate with the full body shakes. I started having panic attacks. I was terrified of something I couldn’t describe – the only thing that seemed to stave them off was eating regular meals but I wasn’t hungry, and I was losing weight all the time.
The antibiotics were playing havoc with my intestines so I was also taking probiotics and vitamins, but nothing seemed to help I just continued to feel terrible until about day 17 of the treatment when I suddenly realised that I felt like getting off the sofa and was interested in something that wasn’t my own misery. I went outside, it was a beautiful, sunny day and I did some weeding in the garden – it was a truly happy moment. I then went back inside and, for supper, produced a dish that wasn’t an omelette. However, the euphoria was short-lived and the next day, I was back to square one – total, miserable exhaustion again.
In my days of real despair I would cling to my husband while he reassured me constantly that I would get better but it might take a while. Without him, I honestly don’t know how I would have coped.
My blood tests results had come back positive and the indication was that it was a relatively early infection. Blood tests results for Lyme can be misleading, however it was the one piece of good news that I had received and I dared to be hopeful that I might get well again one day. I looked up Lyme disease on the Internet and there was a barrage of information, all of it depressing… so many people out there suffering and struggling to be heard, many not even receiving any treatment. One can only hope that with tick numbers on the increase, there will have to be a more concerted effort from the pharmaceutical industry and medical professionals towards tackling it in the future.
The nurse reassured me that once I finished the antibiotics I would feel much better. I didn’t.
I continued to have diarrhoea despite probiotics, the constant shakiness was still there and neurological issues came in waves of differing intensity. But, as the months passed, there was some very slow improvement. By the end of July, I was driving again, managing to do a bit of shopping and occasionally seeing a friend for a cuppa tea in the afternoons.
The slow progress continued, but in February 2018, I was still experiencing neurological symptoms, anxiety and panic attacks. My doctor thought that I must have “chronic Lyme disease” and without doing any blood tests, further investigation or referral to a specialist (he said there weren’t any), decided that I should undergo a second round of intravenous antibiotics. For the next 10 days, I had twice daily 2g antibiotic perfusions. My intestines hadn’t recovered from the first round and this time I stopped eating almost completely, so the weight just fell off.
I became even more anxious and depressed with the thought that this was how I was going to be from now on.
At one point I rang the emergency helpline and the doctor there told me that I couldn’t possibly have Lyme as I had initially had a strong and effective treatment and I was just suffering from anxiety and depression. Confusion set in, I had no emotional support from the health authorities and a lot of the information about Lyme is conflicting. I felt completely desperate but finally met (by serendipity) someone who had also had Lyme and who directed me to a hospital where they dealt with infectious diseases.
I had to wait two months for an appointment, but eventually got to see a specialist. She listened intently to my story, took more blood samples (subsequently these results were negative for Lyme) and after reading my history, was horrified by the amount of antibiotics that had been administered by my GP saying that I had received a much higher dose than was necessary to kill the Lyme bacteria. Her diagnosis confirmed that of the emergency doctor that I no longer had Lyme but was suffering from anxiety and depression and should undergo psychotherapy. By this point, I was ready to try anything so started weekly sessions with a psychotherapist.
This is where my life turned round again at last and slowly, I started to come back to normal as I worked through many painful, emotional issues mostly relating to my childhood, it was truly a blessing.
But, the realisation was that this illness had effectively managed to give me what seemed to be a nervous breakdown. Currently I feel more or less normal, but still with some tingling in my legs and a slight jaw tremor. The specialist also requested MRI scans of my brain and spine which showed no sign of inflammation so again a negative diagnosis for Lyme, but the nerve damage it caused is still there and may take a while longer to heal – three to five years according to the neurologist.
Lyme is a clever disease, it seems to find our weak spots and work it’s damage.
For some that can be the heart, others, the pancreas or nervous system. Its symptoms come in many guises, sometimes they are there, sometimes not, it comes and goes and wreaks havoc with our psyche. It disturbs our minds and destroys lives. The main problem with Lyme is that no one understands it properly. The doctors have many different ideas and in many cases, just don’t know what to do.
It is extraordinarily difficult and frightening for anyone plunged into a world of such uncertainty.