What led to my Lyme disease diagnosis after years of living with a fibromyalgia diagnosis. Click to read or pin to save for later.
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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.

Getting tested

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.

What led to my diagnosis of Lyme disease after years of living with a fibromyalgia diagnosis. Click to read or pin to save for later.
Photography source: Pexels.com

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.

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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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What led to my diagnosis of Lyme disease after years of living with a fibromyalgia diagnosis. Click to read or pin to save for later. 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.

Moving forward

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.

Feeling empowered

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. 

 

 

11 Comments

  1. Your story is parallel to mine!!! I felt like I was reading my own life experiences. I too am learning to accept that I have this as well as learning how to get through the treatments and all that comes with them. I am thinking of you!! I am in the US, in Florida, and regular medical doctors typically don’t believe Lyme and other tick borne diseases can exist here! It’s crazy! I have a wonderful LLMD who is helping me through this whole process. I am so thankful for him! Thankyou so much for your blog!!! Sincerely, Michelle

    • Thank you so much. We have the same struggle here in the U.K. regarding doctors. I really wish conventional medicine would catch up. I’m so pleased to hear you have found a good LLMD to help you. Please keep in touch as I’m very much learning and finding my way through this. It’s always good to connect with people who are going through the same 🙂

    • Hi Donna, yet again your story seems very similar to my own. I was diagnosed with ME/CFS 2 years ago and now feel it may be a misdiagnosis and that I may infact have Lyme. I’m waiting to get a test from my NHS doctor but am now concerned about the Eliza tests. I remember getting the bullseye rash but didn’t know about Lyme at the time and then the rash disappeared so I thought nothing of it – what a dreadful mistake that was. Anyway, great blog and I look forward to seeing how you get on with your illness. Regards, Andy.

      • Hey, Andy. Sorry that you have been through similar. I think it’s good to see if the NHS can help and be sure to mention the bullseye rash and when that was (it’s a definite indication of Lyme). The thing with the ELISA is that it relies on your body producing antibodies. Borrelia is clever and one of the things it does best is suppress the immune system. So often people who have been sick for a long time don’t produce those antibodies. Therefore, a negative test doesn’t rule out Lyme
        unfortunately. I’d highly recommend reading a book called “Unlocking Lyme” by Dr Bill Rawls. It’s one of the best books out there that explains why people get so sick with Lyme and what we can do to help ourselves. Good luck and I hope you are able to get treatment that helps you.

  2. GREAT post. I know SEVERAL people who have the same story as you. My own health journey could have been similar had I let some of my ex-drs convince me that I had fibromyalgia instead of Lyme. I will be sharing this online in hopes that others may follow your lead and see if their symptoms stem from tick borne bacteria. I would HIGHLY encourage you to read two books:
    1-Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease by Richard Horowitz
    2-The Top 10 Lyme Disease Treatments: Defeat Lyme Disease with the Best of Conventional and Alternative Medicine by Bryan Rosner
    They are both well written and have A TON of great info on Lyme Disease and other co-infections. Thanks again for sharing your experience, I KNOW it will help others <3
    http://www.shipwithnosails.com

    • Hey, Genevieve!

      Thank you so much. It’s almost unbelievable how many people share my story and actually quite scary to think of the others who also do… but just don’t know it yet. There is such a huge overlap of symptoms and I guess there are still a lot of people who don’t even know what Lyme is, nevermind knowing that they have been at risk of contracting it.

      Thank you for sharing, I really appreciate it! And thanks for the book recommendations. I have already purchased Dr Horowitz’s book and I am slowly working my way throught it. I’ll be sure to check out the book by Bryan Rosner too.

  3. I’m so glad the Breakspear Medical have been able to guide you through this process. I really can’t understand why the NHS don’t offer the better testing for Lyme disease, given that the ELISA is unreliable. The NHS will have to support those who develop chronic lyme disease so their argument surely can’t be a financial one.

    I’m glad that you have your lyme disease diagnosis so that you can work on specific treatment and management for it, but I’m also so sorry that this could’ve been prevented. I know how frustrating and upsetting it is to not receive the correct diagnosis. I also know what it’s like to be told that you’ll get better, based on an inaccurate diagnosis, only to find out that this isn’t the case. But I can’t imagine finding out that your chronic illnesses could’ve been prevented, or at the very least, their effects minimised. I’m always here for you, if you need to vent or just want someone to chat to. Xx

    Tania | When Tania Talks

    • I really hope that things improve when NICE publish their guidelines in 2018. What they will actually say, however, will remain to be seen!

      Thank you, Tania. It’s horrible to be told there’s nothing more that can be done. I know you have had a tough time of things too. I’m just glad I didn’t listen and instead followed my intuition.

      It was a really difficult thing to get my head around (knowing I have an illness that could have been treated so much earlier) but I’ve managed to work my way through everything and I now feel positive about the direction I am headed. I feel quite passionate about using my experience for something positive and will be putting my energy into raising awareness of Lyme x

  4. Sophie Clarke Reply

    Hello Donna

    Yes my journey so far reads similar to yours. I was told I had ME/CFS by NHS doctors as a default as they had no idea what else to say or do. Only thing they did was put me on waiting list for CBT which I’ve been on for over a year and anticipate being on for another year before being seen and what exactly is that going to do to get rid of it all?

    I then went through a nutritionist and AONM and Armin Labs and got diagnosed with Lyme and several co-infections. I am about to start lots of supplements for it, but am finishing supplements for parasites/yeast infections in gut at the moment, which won’t budge. Also my food intolerances are on the rise and at 50 at the moment and my CFS/Fibro symptoms only seem to get worse.

    If you want to chat and compare, I’d love to Skype? It would be interesting to compare treatment, as I know it can feel like you’re the only one going through it and there’s so much unknown about it – I find it helpful to compare notes.

    I’m also thinking of starting a health/lifestyle blog and would be very grateful of any advice.

    Best wishes,
    Sophie

    • Hi Sophie,

      I am sure there are many like us who share our story sadly 🙁 The really sad part about it, is that many of them may never find out. It’s a real shame that the only help the NHS can give is this. And having to wait so long for it just goes to show how strained these services are.

      I think food intolerances and Lyme seem to be very connected. I don’t think I’ve come across anyone who hasn’t had to make adaptations to their diet.

      Feel free to send me an email and we can chat more 🙂

  5. Hi,

    I’m going to mirror a few other people on here and go “Me too!” I have been in contact with another girl who’s been through the ordeal and is now lyme free after a long journey. I’m currently working with a Functional Doctor called Paul and we are trying to navigate this together. I have also been diagnosed with Hashimotos which was again not picked up by the NHS because of their refusal to look at both types of antibodies and my T3. Dr Sarah Myhill is running a campaign at the moment called MAIMES (Medical Abuse of ME sufferers). I’m going to try and get my MP signed up when this month is over. At the moment I am cleaning up my diet (no gluten, sugar, dairy, alcohol etc) and boosting my detox pathway (mmm milk thistle) and then we are going to go after the little blighters. I would love to hear more of your story. I’ve youtubed my journey so far as I found it difficult to type at the beginning of my condition.
    Anyway, thank you for sharing and I hope you are doing well

    xx

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