Wednesday, 18 November 2015

Getting A Diagnosis~ Lyme Disease.

I have been wanting to write this post for quite some time but it never really felt right (I will explain why later) until now. This blog has always been something quite personal to me and I am usually pretty happy to share what is going on in my life. I really enjoy having this blog and enjoy sharing these parts of my life. However, it can also be a little daunting sharing such personal things, so bare with me. In this case, I feel the need to share not only for my personal gain but in hope that it will educate others in an area I feel not many are aware of.

So, in my case this all started about 6 months ago, towards the end of May. I remember suddenly getting pretty ill. I was completely wiped out and was struggling to go about my normal day. Being around the time of my exams, I assumed that the stress of A-levels and revision had just exhausted me and that I would feel better within a few days of rest. Throughout my life I have had a tendency to get sick pretty easily and was always catching a cold. So, when this came along I didn't think much of it. I thought that it was a little odd how quickly it had come on, but I just assumed that it was nothing too major. Then, I started to accumulate more symptoms. Along with this intense fatigue, I started to get really strong headaches, pain throughout my body and my vision started playing up. I have never had great vision, hence why I have glasses, but it just got worse very suddenly and my glasses didn't make much of a difference. After this, we decided it would be a good idea to take a trip to the doctors. 

Over the next month, I had taken numerous trips to doctors, had a few different blood tests (which I really did not enjoy by the way... I have a tendency to get more than a little faint), get even worse symptoms and still no answers. By this point I was having chest pains, more frequent pains in my knees and back, difficulty concentrating and with my memory and all my previous symptoms had worsened. Overall, I just really did not feel like myself. Typically, I think that I am a pretty positive and bubbly person, but practically overnight I had switched and just felt like a completely different person. At this point, the doctors were struggling to give me a diagnosis, all tests had come back normal, including Lyme's, and it was beginning to look like I had CFS (Chronic Fatigue Syndrome). I really didn't feel like this was my diagnosis but I couldn't think of any other answers. Throughout this time, I was constantly asked about my home life and school like, asking if I was depressed. I can obviously understand why they have to ask this but I knew that I wasn't depressed and I knew that it wasn't all in head. But as time went on and we still had no answers, I began to worry that maybe I just needed to get over it. I knew that as hard as I tried, that wouldn't work but I was simply running out of options. 

I had started my first part-time job back at easter and only a couple of months in I had to take a month off due to the illness. Having had a month's rest and no longer having to worry about school, I felt a little better and managed to go back to work. This was only a part-time job where I worked 5 hours, twice a week but I still struggled with this. I had to sleep before going and I was in pain the entire time. It was really difficult and I dreaded it each week. However, I needed to earn the money to pay for a exhibition planned for 2016. It finally came to the end of summer and I knew that school would be starting soon. I knew that I wouldn't be able to manage school and work together and it really worried me. But, I sat down and figured out that I should have earned just enough money alongside the other fundraising ideas I had planned. I was so so thankful that I was then able to quit my job. I hadn't had the job very long but it was what was best for me and I knew I would be a lot happier without the job to worry about. 

The next week, school had started and I was feeling well enough to attend. I didn't feel like my normal self, but it was good enough. I was still having difficulty in class in terms of my concentration and memory abilities but I just figured that I needed to work harder. I think this was around this time that a lovely lady from our church got in touch and asked us if I had been tested for Lymes disease. She had a friend who was diagnosed with Lyme after many many years. Many years too late for him. My symptoms sounded very familiar to him and he was worried about me. We then got into contact with him where he began to share his knowledge about the disease with us. I hadn't really ever heard of the disease up until then and found it all very interesting. It was around this time that we discovered that the tests in the UK are very unreliable and that the doctors do not know very much about this Lyme disease. I didn't remember having a bulls-eye rash, the main symptom that doctors appear to use for this diagnosis, nor did I remember ever seeing a tick on myself. As familiar as the symptoms sounded to me, I just didn't think I could have this disease. 

By the start of October I was missing school. My symptoms had worsened again and I literally felt as if my body was shutting down. It then continued to get worse to the point where some days I couldn't even get out of bed. I believe it was around this time that we decided to look into private Lyme testing in Germany. We had discovered that this rash was only found in about 50% of sufferers and that ticks can be as small as a poppy seed meaning that I could easily have been bitten without realising. The more research I did, the more people I found who also didn't realise they had been bitten and had very similar symptoms. Speaking to this friend who is a sufferer, he also was feeling worried for me as he recognised the signs and symptoms all too well. We also had learnt that the longer you leave treatment, the worse the disease gets and can leave you with lifelong issues. With this in mind and still no answers, we decided to go with the private tests. I was very fortunate that my parents were willing to go to this effort and pay the additional money or the private tests as I know that no everybody would be this lucky. 

We had the blood taken and sent off to Germany and my symptoms continued. I was too unwell to complete any school work and was always worrying about my health, my education and even my future. It felt like this illness was going to stick with me forever and I worried that I wouldn't be able to live the life I wanted. I am a pretty positive person and I tried to keep these thoughts at bay, but as you can imagine, they arose every now and then. About a week after sending the blood, we got the results. My mum was actually out when she received the e-mail but she couldn't open the document on her phone so she called me to do it from home. I was seriously hoping that the results would be positive (as strange as that may sound) because I was just dying for an answer. I was really really nervous before opening the e-mail and I was shaking like a leaf.

I finally opened the document to see the words 'negative' over and over. My heart sank as I assumed this meant no more answers. However, I then scrolled through the rest of the document where there were lots more results with numbers and other things I didn't really understand. One thing that stood out to me was 'indication for an actual cellular activity against borrelia burgdorferi'. To me, this sounded like it was saying I did have the disease. At this point I was just very confused and didn't know what to think. So, my mum send these results to a lady from the private testing base in England and to our friend, the sufferer, asking if they could interpret this for us. To which they responded telling us that it looked like I did, in fact, have Lyme disease! I was so so so beyond happy upon receiving the news. I had finally been given an answer after 6 months of struggling and a month of being in bed. I know that some people go years and years and years without getting diagnosed and I really feel for those people. I am very thankful that we were able to go down this route and finally receive at least some form of answer.

Throughout this time I have often wanted to write about it on my blog. However, considering I had no idea what was wrong with me, I didn't know what to write. I also had many theories about what it could be but didn't want to offend anybody who was an actual sufferer. Finally, when I did have something confirmed to say, I felt too unwell to write about it, hence why it has taken me so long to write this post. 

I am very aware of how huge this post is right now so I think that will be all for this post. However, I still have a ton more to share about the symptoms in detail, trying to get treatment, my NHS journey (the different hospitals and tests) and where I am at now. I plan on sharing all of this information, but if you have any specific questions about this then feel free to leave a comment or contact me directly. 

I am still not well, however, I am getting there and feeling better than I have in weeks and weeks. 

Thanks for reading,

Holly Xx


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