Last week I wrote about travelling to Breakspear Medical– a private clinic specialising in environmental illness– for an initial consultation. I have long felt that there was more to my chronic illness puzzle than fibromyalgia and chronic fatigue and I hoped that Breakspear would be able to find the missing pieces.
Over the past two years, I have been working hard to restore my health and I feel I have made good progress. I’ve gone from bed/housebound to being able to manage most daily living tasks and many of my symptoms are now under better control. However, fatigue and poor stamina still dominate and I have also frustratingly experienced a few setbacks this year.
Essentially, I reached the point where I felt like I needed some extra help. Unfortunately, I had exhausted all of the options available to me through the NHS, which meant seeking private health care. After some careful research, I decided Breakspear was my best option.
I hoped that Breakspear would be able to give me the answers I needed to move forward in my recovery. I’ll be honest with you, though, I felt anxious and reserved about going to Breakspear. I worried that they would only confirm what I already knew and it would, therefore, be a waste of time. However, despite these reservations, I concluded that it was worth going to see a doctor there. After all, I didn’t have to pursue things beyond the initial consultation if I didn’t want to.
I’m thankful to say that my fears were unfounded. My doctor at Breakspear looked at my health from a completely different perspective and went beyond my fibromyalgia diagnosis. In doing so, he uncovered the underlying dysfunction in my body and ultimately what was causing it. Having had umpteen tests over the years that came back as “normal”, this in itself felt more than worth it for me.
So what exactly did he find?
I had various tests done through Breakspear, some of which were sent to various specialists all over the world! As I mentioned in my last post, it was up to me to decide which tests I wanted to do. I didn’t feel pressured in the slightest and I was informed about what the tests were and why my doctor was recommending them before I made my decision.
Some of the tests did come back negative but others gave me the answers I was looking for.
The reason for my poor stamina and chronic fatigue
When the results of my fatigue panel test came back from Acumen labs, I had the reason for my chronic fatigue and poor stamina in front of me in black and white. This test was very insightful and showed why I cannot push on through my fatigue and why I have a ceiling on my energy expenditure.
Put simply, my mitochondria don’t function properly. The mitochondria are the little powerhouses in your cells responsible for producing energy in the form of ATP (adenosine triphosphate). I had long suspected I had mitochondrial dysfunction but it was good to know for sure!
My test results showed that I have low whole cell ATP– meaning my cells do not have enough energy– and my mitochondria are not able to produce ATP as rapidly as they should.
I also have low ATP-related magnesium. Magnesium is required in the process of producing energy, so low magnesium equals low energy production. This can, of course, be due to a magnesium deficiency. However, given that I have long supplemented with magnesium I believe my mitochondria may be unable to get enough magnesium into them for some reason. I am having a further blood test to check for magnesium deficiency, though, just in case.
To add to the above problems, my body is poor at recycling ADP back to ATP (read more about what this means here) and there is a rapid depletion of ATP on increased energy demand.
So basically, my body sucks at producing energy and any that it does produce is rapidly depleted as soon as I place any energy demands on my body. It’s why I feel like I am running a marathon when I am only trying to walk a short distance!
This poor recycling of energy also explains why I crash if I over-do it. I simply run out of gas and my body goes into “protection mode” until it can meet my energy demands. This is why pacing is so important.
Why I feel unwell
Part of the fatigue panel test included looking at cell-free DNA in blood plasma, which is associated with tissue degradation. Very low levels are present in healthy people and increases are associated with serious illnesses, one being ME/CFS. My results showed an elevated level of cell-free DNA, which would explain why I physically feel unwell.
Additional testing revealed that I have mild yeast overgrowth in my gut and a marker for bacterial overgrowth in my small intestine was also found. On top of that, there were higher levels than there should be of imbalanced flora in my gut and the beneficial bacteria Lactobacillus and Enterococcus were absent. I admit to letting my diet slip a little in the weeks prior to going to Breakspear, so this was definitely a reminder to tighten things up again!
It was also revealed that I had iodine, riboflavin (vitamin B2) and co-enzyme Q10 deficiences. I was already supplementing with 8mg of riboflavin and 120mg of co-Q10 so I clearly need more for some reason. Either that or my body is unable to use it correctly.
Additionally, I also had testing done for chemical sensitivities, which showed that I was highly sensitive to inorganic mercury and that I had borderline-high sensitivities to azo-dyes and nitrosamines.
Finally, I had test results that ruled out certain viral and bacterial infections but indicated previous exposure to chlamydia-pneumoniae and Epstein-Barr virus (EBV). To be honest, I think most people will have had exposure to these at some point in their lives. The EBV result was a bit confusing, though, as my doctor originally wrote that I had high levels of IGG Epstein-Barr Viral Capsid Antibody and IGG Epstein-Barr Nuclear Antigen Antibody, indicating an on-going viral infection for EBV. However, on speaking to him he then said these results only indicated past exposure.
The underlying cause of these issues
You have probably read the above thinking that it explains the fatigue but that I haven’t really addressed the cause of my fibromyalgia. I truly believe the next result I am going to share with you is the underlying cause of my fibromyalgia, chronic fatigue and all of the issues I have discussed here.
I tested positive for Lyme disease.
I remember getting my results and reading the words, “indicating an active Lyme borreliosis.” My heart sank. I imagine that most people who find out they have Lyme disease feel relieved that they finally know what is wrong. I didn’t. I did not want to have Lyme disease.
I had been aware of Lyme disease for quite a while thanks to reading the book “Suffered Long Enough” but it wasn’t until the spring/summer of this year that I considered it as a possibility for me. Prior to that, I had firmly planted myself in the fibromyalgia and ME/CFS camp. After all, these made sense. One rheumatologist even wrote that I was, and I quote, “textbook fibromyalgia”.
But then I had this nagging voice in my head that would not shut up. The one that was telling me there was more to my chronic illness story. The one that insisted something didn’t feel right. It felt daunting to consider other possibilities, but I went as far as to enquire about having testing for Lyme disease done through a lab in Germany.
In the end, I didn’t pursue it because it felt too overwhelming. From what I had read I gathered the tests for Lyme weren’t the most reliable and false positives were common. I felt I could have been spending a lot of money to receive yet more negative test results. And, of course, I was doing all of this off my own research and could have been barking up the wrong tree.
I said in my post about testing for Lyme disease that it would be different if I had a doctor telling me to test for it. At the end of my initial consultation, my doctor said he thought I could have Lyme disease and coinfections. It, therefore, made sense to test for it.
I am not alone in testing positive for Lyme disease
One of the catalysts that brought Lyme disease to the forefront of my mind was the growing number of people I knew online who were testing positive for it. People with ME/CFS, fibromyalgia and even MS diagnoses were going on to test positive for Lyme disease.
Lyme often presents itself as a “flu-like” illness and the main ongoing symptoms of untreated Lyme disease are chronic fatigue, muscle and joint pain, sleep disturbances, cognitive difficulties, numbness, tingling… sound familiar? Lyme is called the “great imitator” for a very good reason.
Many people who test positive for Lyme disease (up to two-thirds) do not present with the classic bull’s eye rash and many (thought to be around 50%) do not even recall being bitten by a tick.
Now, I am not naive enough to think that every person with fibromyalgia (or ME/CFS) will go on to test positive for Lyme disease but I felt like I couldn’t end this blog post without sharing this information with you.
If you want to read more, below are links to blog posts written by people who have shared a similar experience to me:
1. Laura tested positive for Lyme disease 15 years after her ME/CFS diagnosis and 2 years after her fibromyalgia diagnosis.
2. Donna Gregory first fell ill in 2009, was diagnosed with fibromyalgia in 2014 and went on to test positive for Lyme disease earlier this year.
3. Valerie was diagnosed with fibromyalgia and CFS but after nineteen years of illness discovered she had Lyme disease. She no longer blogs.
4. Sue’s son tested positive for Lyme co-infections that went undiagnosed for three years because his symptoms were believed to be caused by his already diagnosed ME/CFS. Sue believes everyone with ME/CFS and fibromyalgia should test for Lyme disease and shares her reasons why in this post.
5. Sophia has suffered from chronic neuropathic pain since 2008, with her symptoms increasing and becoming more severe in 2014. Despite an initial positive result, Sophia was told she tested negative for Lyme disease through the NHS and subsequently received a diagnosis of POTS. Sophia went on to do private testing for Lyme disease and got a positive result. She is now seeking treatment in the US.
7. Emma first fell ill in 2009 with severe sinusitis and flu-like symptoms. She had an ELISA test for Lyme disease, tested negative and was subsequently diagnosed with ME/CFS in 2010. In 2011, she went on to receive a POTS diagnosis. Emma finally tested positive for Lyme disease through private testing earlier this year.
8. Rhosyn fell seriously ill in 2012 and in April of 2013 she received a diagnosis of ME/CFS. In June this year, she found out she had Lyme disease.
9. Kami received a diagnosis of relapsing-remitting multiple sclerosis in 2010. She managed to live a close to normal life following this but everything changed in 2013 when her symptoms worsened. She then found out she had been misdiagnosed and tested positive for Lyme disease.
10. Emma was told that she had severe ME. Her health deteriorated so dangerously that she and her family decided to take action and go private with her health care. She went to Breakspear Medical and discovered that she had Lyme disease and co-infections. You can read more about what tests Emma had and what they uncovered here.
It was the right decision for me
Although I initially felt anxious about going to Breakspear, it has definitely been the right decision. The main questions I wanted answering and what drove me to visit Breakspear were: a) did I have mitochondrial dysfunction; b) did I have recurring viral infections, such as EBV or other viruses hindering my recovery; and c) did I have Lyme disease?
Going to Breakspear has therefore answered my questions and I now have a diagnosis of active Lyme disease and co-infections (Lyme, sadly, is rarely alone and brings its pals to the party in the form of various co-infections!).
I wasn’t sure how I would feel if I tested positive for Lyme disease. I may talk about this more in a future post but, for the most part, knowing has made me feel more empowered.
I hope you have found this post helpful and if you have any questions or comments, please leave them down below.
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