My name is Chris Ward and I live in East Devon. I recently tested positive for Lyme disease following hospitalisation. This is my story.
It was early summer 2024 that I started to feel unwell. I was starting to feel very lethargic, had trouble concentrating, suffering with constant sleep interruption and aches all over the body. It felt like flu-like symptoms. To be honest, I didn’t pay much attention to it. I have quite a high profile job, I work in quite a stressful industry and love what I do. I am happiest when ‘on the go’ and ‘busy’ and put my symptoms down to a little stress and tiredness through work and burning the midnight oil.
As I moved through the summer of 2024 I continued to suffer with ongoing aches and pains, my sleep pattern deteriorated and I felt under the weather. I continued to work throughout the summer although it was becoming clear that something wasn’t quite right within my body. I had a couple of blood tests (which came back as normal) so I satisfied myself that I was ok and there was nothing serious to worry about.
As we got to August 2024 I recall one day being unable to get out of bed, and struggling again with flu-like symptoms. I was bedridden and dosed up on the usual medications and painkillers. I recall speaking with my wife saying that I just didn’t feel right. This being said, the aches and pains would subside and I would start to feel normal again. My way of working and living was to shrug it off and I presumed I was again suffering with a little stress.
At the beginning of September 2024 things started to escalate and change quite quickly. I returned from a business trip overseas to find I had contracted norovirus. I was ill for 48 hours with the sickness and vomiting bug. This was the trigger that escalated my condition, the medical teams now believe.
Following recovery from norovirus I started to struggle greatly with my sleep pattern and my mobility. It became more and more difficult to stand and walk and I found myself arm in arm with my wife when going for short walks. The journey to climb the stairs became like an Everest expedition. It got to the beginning of October when it was clear I was having severe mobility issues to the point that it was very noticeable and the pain was getting worse. I knew something was now very wrong and asked my wife to take me to my local A&E.
I spent the day in A&E running through my medical history and symptoms with the doctors who suggested that I was likely suffering from sciatica, after carrying out some tests. I had suffered from back pain previously and did highlight that it did not feel like that sort of pain. The view was that there was no suggestion of any other illness and all my blood results and scans were normal. I was sent home with the suggestion to take pain killers if pain continued.
I went home and for 7 days the pain worsened, I was unable to get upstairs, my leg movements were getting worse by the day and my sleep was interrupted hourly. I was in severe pain and discomfort. My wife took me back to A&E where I was seen my another consultant and we went through the last visit and my symptoms. Following tests it was clear that they were not getting any reflexes out of my knees and it was recognised that my mobility was becoming an issue.
The consultant was concerned I may be suffering from a rare illness called Guillain-Barre syndrome – an autoimmune disease. After 12 hours in A&E I was then admitted to hospital and onto a neurological ward. I have to say the medical care I received was superb. I was immediately put on an IVIg infusion drip, underwent MRI scans and electrolyte testing, and spent 2 weeks receiving treatment for that. At one point my breathing became so concerning a possible move to the ICU was suggested, if breathing on my own did not improve. I was also at this point on 4 hourly spirometer testing to monitor my breathing which was continuing to deteriorate. At times I was in and out of consciousness with family at my side. At this point I also lost the ability to walk and was bedridden.
As mentioned, the care I was receiving for Guillain-Barre syndrome was first class but concerningly there was no clinical diagnosis to support the doctors working theory. I did not seem to be responding to treatment. At this stage the consultants ordered a lumbar puncture to test for other neurological possibilities. It was then that I tested positive for Lyme disease. This came as a complete shock. I was totally not expecting this!
To complicate things further, I have no recollection of being bitten by a tick, I had no rash, I had no evidence to support Lyme disease but clearly I had been infected at some point as I had a positive diagnosis. A lot of things started to make sense around the symptoms and the doctors seem to think my earlier norovirus may have woken up Lyme disease that may have been lying dormant in my body for a period of time. I was put on an IV drip of Doxycycline immediately and had this for 5 days before being moved to oral tablets and a rehab unit to help with getting me walking again. I was wheelchair bound and in considerable pain. After further time in rehab I slowly started to regain my mobility and was discharged home at the end of November.
As we move into the new year, I am continuing to have occupational therapy and physiotherapy visits weekly. I am still on medication and the pain, aches and mobility issues continue. I have no idea whether I am cured, whether Lyme remains dormant in my system, or for how long I may continue to suffer. I am concerned that I have been left with arthritis in my knees as the pain remains excruciating and I have X-rays scheduled this month to learn more.
At this stage I honestly do not know what the future holds. My mental well-being has suffered and I remain concerned to what extent I will recover. Sleep deprivation, pain and ongoing memory fog and cognitive issues remain and are causing me anxiety. Noise continues to be an issue for me, more now than ever, and I struggle when communicating with people. This is now affecting my social life and my normal way of living.
Getting dressed is a challenge, making a cup of tea a chore, and the thought of going outside for a walk seems like a major event. Normality doesn’t exist anymore. The future doesn’t look great at this stage, but I remain optimistic as there are always others who are worse off. The support of my family and medical team has been great but I know not everyone has or is that lucky and I am keen to bring further awareness to this debilitating disease. It really is horrendous. I want to do all I can through the media to help others and ensure that people take this seriously. If you are bitten please get checked. I was unlucky. I had no idea, but I am also lucky as things could be worse I guess.
Update: Listen to a BBC Radio Devon interview with Chris Ward and Kirstie Hill, Public Health Specialist, to learn more about Chris’s progress.