In September, I received the test results confirming my Lyme disease diagnosis. I remember the moment the email came through. My mobile phone dinged and I saw that I had an email from Breakspear Medical. A sense of anxiety came over me and I almost didn’t want to open it. I think I knew what it was going to say. When I read the words “active Lyme borreliosis” my heart sank. I honestly wanted to cry.
Suspecting a Lyme disease diagnosis
It was my experience with hyperbaric oxygen therapy (HBOT) that first made me question Lyme disease. Prior to that, I was firmly in the fibromyalgia and ME/CFS camp. I had suspected that an infection could be at the root of my illness. However, my suspicions were geared towards Epstein-Barr virus (EBV), herpes viruses, Chlamydia pneumoniae and Mycoplasma. I didn’t consider a Lyme disease diagnosis– even when I became aware of what Lyme was– because I didn’t realise I had been at risk of contracting it.
I reacted so strongly to HBOT that, at the time, I wondered if I was experiencing a herx reaction; something associated with Lyme disease that I learned about through reading patient blogs. From that point on Lyme disease was pushed to the forefront of my mind. I sat on it for a couple of weeks, read lots of information about it and discussed my suspicions with my mum.
As I contemplated things, I scoured the internet to see if anyone had been in the same position as me. I found umpteen stories of people diagnosed with either fibromyalgia or ME/CFS who went on to test positive for Lyme disease. I even knew some of them through blogging and I could no longer ignore it.
Exploring testing for Lyme disease
At the beginning of the summer, I researched testing for Lyme disease. The NHS rely on an ELISA test, which is unreliable for detecting long-term infections. It’s also poor at identifying acute infections and many Lyme-literate doctors (LLMDs) feel it has limited usefulness. A negative ELISA does not rule out Lyme disease. But that’s the approach the NHS take.
I knew if I had Lyme, then I had been infected for years. Therefore, I didn’t feel confident in going down the NHS route and decided the best way forward was to go private. My first point of contact was AONM, who are the UK contact for Armin Labs in Germany.
At the time, it felt like a complete minefield. Armin Labs recommended multiple tests for both Lyme disease and its many coinfections. It was overwhelming. Although there are better options available than the ELISA test, I knew that all testing for Lyme disease is unreliable. I worried that I would be spending a lot of money to get no further forward. At that point, I decided against pursuing testing. I felt it was something I needed to feel more confident about.
As I continued to experience setbacks over the course of the summer– with a particularly bad one resulting from the steroid asthma inhaler I was prescribed– I decided to book a consultation at Breakspear Medical. I was struggling with the up and down course that my health had taken and I needed answers. My hope was that Breakspear would be able to find the underlying cause of my fibromyalgia and chronic fatigue.
When the doctor said he strongly suspected a Lyme disease diagnosis with coinfections, I felt confident to move forward with testing. Having a doctor to guide me through the process was reassuring. Had I gone with Armin labs earlier in the year, I would have essentially been going it alone; both for testing and treatment.
The emotional roller coaster that is a Lyme disease diagnosis
I was naive. Prior to going to Breakspear, I didn’t think a Lyme disease diagnosis would change anything. My thought process was that I had been sick for many years and I would just be adding another label to it. I felt lucky actually. If I had Lyme disease, I had been unknowingly treating it through using herbal therapies for my fibromyalgia for the past (almost) two years. The Vital Plan supplements I take address not only fibromyalgia and chronic fatigue–the reasons why I take them– but also Lyme disease.
Then the results were in front of me in black in white and my true emotions surfaced. I was really upset and then I was overcome with anger. At first, I couldn’t comprehend why; I was totally taken aback. Then it struck me. It was because my suffering could have been prevented.
I believed I had a life-long, untreatable health condition when the truth was I had a bacterial infection that could have been diagnosed and treated.
Lyme disease is best treated in the early stages
Lyme disease is caused by the Borrelia genus of bacteria and in the acute stages of illness, it is generally straightforward to treat. It requires a course of antibiotics and most people will be successfully treated*. The big problem comes when it is not diagnosed and treated early.
Borrelia is geared towards survival and it employs a number of strategies to ensure it does just that. I won’t go into this here or I’ll be writing forever, but the long and short of it is the longer you are infected, the more persistent the bacteria are and the more difficult it is to treat.
What could have been overcome with a course of antibiotics, for me became a debilitating illness. One that has seen me go through multiple losses, including my career, income and independence. To realise this could have all have been potentially prevented is difficult to come to terms with. And, sadly, I am far from being alone in my experience.
Why was my Lyme disease diagnosis missed?
My belief is that I have had Lyme disease all along and it has caused my fibromyalgia and chronic fatigue. Given that fibromyalgia is essentially a diagnosis of exclusion, it’s frustrating that Lyme disease was never considered. At the time I was going down the route of being diagnosed with fibro, I was not aware of Lyme disease. I can’t help but wish that I had been aware of Lyme and the risk of exposure (like I am now).
I did not present with a bull’s eye rash
My disadvantage has been that I did not present with the most well-known symptom of Lyme disease: the bull’s eye rash called an “erythema migrans”. The NHS state that this does not occur in a third of Lyme disease cases. However, I have also read doctors state it only occurs in a third of cases. Either way, it is not common knowledge that the absence of a rash does not rule out the presence of Lyme disease.
I also did not know I was bitten by a tick. Again, up to 50% of people with a Lyme disease diagnosis cannot recall being bitten. With hindsight, and knowing what I do now, I can recall a time where I potentially removed a tick without realising. I remember picking off this “tiny spot/scab” when I was in the bath one evening and thinking it looked odd.
This is gross, so skip if you’re easily creeped out, but when I eventually got it off me I put it on a bit of tissue to look at it better. I remember pressing it and there being a bit of blood and then I freaked myself out because I thought this “spot/scab” looked like it had legs. It was so, so tiny and it was difficult to tell so I told myself I was being ridiculous.
Of course, the penny has now dropped and the fact I didn’t remove it correctly only makes me wonder more. Was this a tick? Was this the moment I was infected?
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disease. This is how Lyme disease presented with me. It was a gradual onset that worsened over time.
When you take those symptoms into account, it’s no wonder I wound up with a fibromyalgia diagnosis. There is a massive overlap between the two. I just wish someone had delved deeper. Or I had reached the educated place that I am in now, years earlier.
I haven’t yet fully come to terms with everything and I still feel a huge sense of grief, but I know I need to let go to move forward. There really is no point in clinging on to the “could haves” because I am powerless to change what has already happened. I know this, but I also appreciate it doesn’t make things any easier.
I am therefore trying to channel my energy into more positive things. One of which is using my blog to create more awareness of Lyme disease. I feel passionate about this because I do not want anyone else to go through what I have.
Receiving my Lyme disease diagnosis has been difficult. I have been taken aback by some of the emotions I have had to work through and acceptance will continue to be a work in progress. However, I have to say it has also been empowering.
With the help of Breakspear Medical, I can now be even more targetted in my approach to treatment. And I also have more treatment options available to me should I not progress as hoped. I can’t help but feel empowered by this going forward.
I’d love to hear your thoughts on this post down in the comments below.
*It has to be said that some people who are treated during the acute stage of Lyme disease with antibiotics do go on to develop persistent symptoms. This is known as post-treatment Lyme disease. While this may be due to inadequate treatment, there can be more complicated factors involved.