My experience of Lyme disease and treatment in the UK

Hello everyone, I felt it was important for me to share my nightmare experience of living with lyme disease, the struggle to get treated and the long journey to finally I hope remaining symptom free. This is my story.

I live in London. In 2010 whilst sitting in my garden I felt a sharp pain on my forearm. An strong electric shock type of sensation passed through my body. As I looked down I saw a tiny insect that looked like a 'money spider' attached to my arm. I tried to brush it off but noticed it was still attached to me some how. With some force I swiped at it till it fell off my arm. Despite being quite shocked at the electric shock feeling I thought nothing much of it.

About 48hrs later whilst at home watching tv one evening, I suddenly and without warning began to experience what I can only describe as flu like symptoms. My joints ached terribly and I began to shiver uncontrollably. I thought to myself, this must be what genuine flu feels like. I went to bed early thinking I was going to have to call in sick the next day. The next morning I awoke and felt completely normal. I found it very strange that I could experience such powerful symptoms and feel fine the next day.

A good 10 months later I became aware that I wasn't quite right. I had multiple (a long list) of symptoms that would rotate every 4 or so weeks, these included symptoms like; heart palpitations, anxiety, shortness of breath, dizziness, brain fog, heightened hearing, joint pain, vertigo, sensitivity to light, problems sleeping, sharp shooting pains in my head and body, waking up during the night as I had stopped breathing, sensations as if the ground I was walking on was moving, unable to concentrate, trouble with spelling and many many more symptoms. I thought I was going mad. I put it down to work stress but did visit my GP.

After a number of visits (over a 10-12 month period) to see my GP and my heart palpitations getting worse my GP sent me to a cardiologist. After describing my symptoms the consultant attached a heart monitor that I was to wear on my persons for 48hrs. On my return to the consultant I was shocked to hear that I had type two heart block. They told me that this type of condition usually required a pacemaker. I was completely shocked at their findings. I had never had any health issues and no family history of heart problems. They discussed the pacemaker option with me and said we could wait a little while to see how I feel about it.

Somehow I just knew that this had to be a result of something as I was having so many other symptoms. I began researching into possible causes and one disease kept coming up - LYME disease.  There, listed under Lyme disease were most of my symptoms. The problem with Lyme is that the symptoms seemed to rotated every 4 or so weeks and  new ones would also developed. I suppose that is why it is so hard for GP's to diagnose.

I visited my GP and insisted on a blood test for Lyme disease. After a bit of a giggle and telling me it was only a problem abroad, he agreed.

Nearly 2 years after the bite by the nymph tick the results came back POSTIVE for Lyme from a lab in Southampton. I was relieved that finally I was going to get treated and be cured of this nightmare disease. Little  did I know. I now know how fortunate I was to have a GP that was willing to test for Lyme disease despite initially being very sceptical. He was as shocked and surprised when the result came back positive.

I was sent straight from my GP to a consultant at my nearest hospital who specialised in tropical diseases. I was on a course of antibiotics that had to be administered via drip as the Lyme bacteria had entered my nervous system (obvious by symptom of heart block, shooting pains in my body). I would require 30 days of this treatment that would last 30mins each day.

I was so happy that finally this nightmare was going to be over. A few days into my treatment I began to feel a lot better. It became obvious to me that the consultant was very optimistic about the treatment and explained that my blood test results showed recent exposure to Lyme disease. I explained that my symptoms started over 20mths ago and this could not be possible. He never listened to what I was saying and it became clear that he was so clueless about Lyme and kept referring to the NHS guidelines on treatment and symptoms. He wasn't listening to my experience which would have obviously helped him with future patients. It wasn't just the fact that he was clueless he was unwilling to except anything else apart from what he had read in an out of date medical book and follow guidelines that were so inaccurate. At this point I just felt as long as I feel better I never have to see this idiot again.

When my final day of treatment arrived I was feeling great. As the days passed however, I began to feel my symptoms return. I was devastated. I had now read how hard it was to receive successful treatment with one course of antibiotics. Treatment is a nightmare when it comes to Lyme disease. The NHS have done little research and continue to believe that a short course of antibiotics will do the trick. A very large number of patients complain of reoccurring symptoms and are branded 'crazy' by the medical profession. My consultant told me 'it was all in my head' and refused anymore treatment. My consultant kept telling me it was all in my head.

From reading others experiences on the internet I knew that I had to try and find a cure myself. I began taking vitamin c, cat's claw, oregano oil, grapefruit seed extract, coconut oil, garlic capsules, using Epsom bath salts in my bath and following the salt protocol. I believe the salt protocol helped immensely although it tasted awful. I didn't use these all at once. It is better to rotate every month or so.

During this time I was referred to another specialist hospital who couldn't do anything for me. They stated that I had had the recommended treatment and the medical profession are unsure as to why so many people with treated Lyme complain of ongoing symptoms. Very helpful - not. I also had a brain scan there that revealed inflammation and areas of liquid (I have forgotten the medical term for this) caused by the inflammation. This helped explain the memory problems and other symptoms as the bacteria had made it's way into my head. My GP informed me that with time this will be dissolved by the body. I believe the salt protocol helped with this. It makes sense as salt helps dry out any moisture from the body.

Please be careful when trying the salt protocol. I found that a little goes a long way and it's not about quantity. That goes for any herbal remedy. Speak to a knowledgable professional before taking any herbal drug.

I cannot tell you what one herbal remedy did the trick, I believe it was a combination but 18mths on I am symptom free. I have had further heart tests and the heart block has disappeared. I have had blood work done and they have told me there is no Lyme disease (antibodies for it) in my blood. I recently gave birth and my baby was tested as a precaution and that came back negative. It was a long and very painful road. I know that's not what you want to hear. I wouldn't wish this disease on anyone. It was a living hell. The medical profession is clueless in its detection and treatment of Lyme disease as many off you sadly know and have experienced. Be persistent in getting tested. It helps to get a positive diagnosis from the NHS as positive results from outside the UK are not taken seriously. Insist that you have a blood test. Try a number of doctors. Be prepared for a long journey as nothing is going to work overnight. Be strong and persistent. Don't give up. There is hope.

I wish you all good health

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