Before all this, I had no idea what Lyme Disease was or that ticks could transmit multiple, serious diseases, reactivate dormant viruses and transmit other deadly viruses. I had no idea of the risk of a simple dog walk or picnic in the park. I had no idea that infected ticks can be and indeed are all over the UK, as well as abroad; Urban and rural areas.

It was March 2020. Covid was in the news as something emerging; a new deadly virus and the world's attention was on that. The NHS was already becoming overwhelmed. I had just celebrated my 40th Birthday with a small gathering of friends and family. I still remember the day when I first noticed the rash. I was rushing around attempting to get my daughter to a Consultant Paediatrician appointment (I have two autistic children with complex needs but more about that later), and we were late as usual. Amongst the rushing, I became completely pre-occupied with an intense itch on my leg but I had trousers on and no time to check it or change clothing, so I had to carry on the best I could. This was a Wednesday. When I eventually got home and had chance to look I had what I assumed to be an insect bite of some sort although I remember thinking that it was odd as it was March time, not the typical time of year for mosquitoes etc. I would have been wearing trousers if walking the dogs due to the weather. I treated it with topical anti-histimine cream and anti-histimine tablets that I take daily and multiple creams to contain the itch. Although the itch was so much more intense that I remember experiencing with other insect bites. Over the next few days it grew in size.

On the Saturday I awoke to find an almost 'text-book' bullseye shaped rash which I know now to be called the Erythema Migrans rash. We have an Autism Assistance Dog for my son, from Dogs For Good, and I remembered in some of the training and information provision they gave to me about having a dog was about Lyme Disease and the distinct rash. I researched further and confirmed my suspicion and that in fact it is diagnostic in itself for diagnosis of Lyme Disease. Of course on Saturday, my GP practice was closed. I called 111 but due to the situation quickly escalating with Covid it was going to take hours for even a call back. I researched accessing a private GP as I had also read that accessing treatment urgently gave the best chances of full recovery and despite the cost, I had to find a way of accessing the antibiotics I needed as soon as possible. I found an online service via a local pharmacy that had appointments that afternoon.

The GP I accessed, because a remote consultation, by coincidence was located in an area of the UK that historically has ticks more active and prevalent, and had a greater knowledge of other GPs I later encountered in my local area. I was immediately prescribed a course of Doxycycline antibiotics, as per the NICE Guidelines for an acute infection. I initially felt relieved thinking I had sorted things. Towards the end of the 3 week course, I was still experiencing significant symptoms including neurological symptoms so following a further consultation with a GP from my register surgery, I was prescribed further Doxycycline, although this was not necessarily in line with NICE guidelines completely at this stage. Following this further course, I thought that I felt mainly better but shortly after symptoms restarted and from there the rollercoaster of symptoms building, coming and going, worsening started.

A referral was made to my local Infectious Diseases (ID) Consultant. The whole experience was degrading and dismissive and I was denied a service. Even when the test that was sent to Porton Down, after the media started asking questions, came back positive (unusually as the NHS ones are not very accurate and outdated), it was reflected to me that it MUST be a "false positive". I couldn't possibly still have Lyme Disease. The last conversation I had with the Worcestershire based ID Consultant, via phone, included the Consultant stating that "(I) may well have Lyme Disease, but that is all the NHS are able to do for you". I was referred to the Chronic Fatigue Team as the only support offered to "manage" my symptoms; but I want to treat it and get better not just manage it!

Along with many others in the UK, and across the world for that matter, my health is declining and there is no help or support in the conventional sense. Certainly, in the UK, the NHS does not recognise Lyme Disease as a chronic condition. Despite the knowledge and understanding of Long Covid now, this understanding does not seem to transfer to tick-borne infections. I have seen the ID team, multiple GPs to see if they would at least prescribe what was recommended by a private specialist, to see if they could put in a request to the local Integrated Care Board, but all were declined. I have been to see my MP, who at the time was the Secretary of State for Health and Social Care, who on the face of it understood and agreed that the NHS should help me but in the end it went nowhere. I have written to the Shadow Secretary, Wes Streeting to see if he could help and didn't even get a response.

Consequently, private treatment seems my ONLY option. Equally, that private treatment is extremely limited in this country. There are some options but the best option for me I believe is accessing a treatment in Germany. There are several issues with this though however. The money of course as the quotation I have been provided with is for £22,000.. and that is just the treatment. I would also have costs of travel accommodation etc. However, the other major factor is my home situation and the needs of my kids. We are going to need a master plan in place if I am going to be able to access the 4 separate weeks of treatment that is currently recommended. This will likely also have a cost. We have managed to scrimp and save already approximately £9000 but sadly this will not be enough.

I also hope that sharing my story along with others will help inform people of the risks and support change to the NHS provision and recognition of Tick Borne diseases.

Any contribution of money or support and raising awareness is gratefully received. Thank you for reading.