I found out the underlying reason for my fibromyalgia and chronic fatigue. Click to read or pin to save for later.
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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?

My results

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 issues

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.

6. Faye tested positive for Lyme disease years after her ME diagnosis. On her blog, she also shares why she decided to have blood tests for Lyme done in Germany.

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.

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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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Hello, I'm Donna. I'm a Scottish artist who lives with chronic illness. My blog began in 2013 as a means for me to share and connect with others living with chronic illness. On my blog, I have shared my journey back to better health and the diagnoses I faced along the way. I now work as an artist and sell my products in my online shop. I continue to write about chronic illness on my blog and also share helpful posts about art, business and bullet journalling.


  1. I know this diagnosis can make you question whether it’s a truly positive lymes.When I finally tested positive after many tests I was sad but finally relieved. I found out that it can be a multi system illness to include all the Co -infections. I was introduced to Dr. Horowitz on U-Tube. I have become as literate on Lyme as I possibly can because in some cases you may have to educate your healthcare providers.Then there are some medical professionals that minimize this illness. There’s alot of information out there to use.Having chronic lyme now for over 20 years i’ve seen now how it’s becoming more recognized in the medical community and with more treatment options . Take care

    • I haven’t questioned my diagnosis but I say it’s one I do not want to have because I understand just how complicated and devastating it can be. I was hoping for something potentially easy to fix lol. I think becoming as Lyme literate as possible is definitely the best way forward. I’ve watched Dr Horowitz on YouTube too and I’m currently reading my way through his book. I’ve also read through a couple of other books, including Buhner’s, as I definitely think knowledge is power ๐Ÿ™‚ Lyme seems to be poorly misunderstood over here, with many “myths” still being believed despite current literature saying otherwise. It’s great that you have seen a shift towards better understanding. I hope it continues!

  2. Hi Donna thank you for sharing your story it’s incredible, I am delighted that you finally have answers. I like you seem to be in a similar situation I live in Ireland and have similar results to you. I would be grateful if you could let us know the next step what advice Breakspear give you and what treatment plan you need to do in order to get well. I look forwarding to hearing from you. Best wishes and be well soon x

    • Thank you Veronica. I’m sorry to hear that you are in a similar situation. I watched a documentary on living with Lyme in Ireland that was very eye-opening. It seems to be poorly understood there… not that it’s much better over here mind you! I do plan to talk about how I progress with my treatment at Breakspear. It might take me a while to write about it as I like to understand and work through everything before sharing it on my blog. However, I’m happy to chat with you about it if you want to drop me an email ๐Ÿ™‚

  3. Katherine Walker Reply

    My PCP called what I have Fibromyalgia on the last 3 visits to his office. Today I’m going to my first Rheumatologist to see what she has to say. I have all the symptoms, but need to hear it from a specialist to confirm. What I wondered from you and others is: “Do you have horrible itching?” I scratch and then these big welts appear. I even bought a brush made for a charcoal grill that I was going to use on my back until my husband stopped me. HELP!

    • Good luck with you rheumatologist appointment Katherine. I used to itch badly and sometimes can still have this occasionally but not to the severity that you describe. For me, I have intolerance and sensitivities– both to foods and things like washing powders, cosmetics etc. Going through an elimination diet helped and using products from companies such as Green Peoole has also helped.

    • Mary Scott Reply

      Hello. I came across this post while searching for info on my illness. I also itch a Lot. I use a hair brush and a shower brush. My itching is bad in the morning, moderate during the day and gets significantly worse in the evening. I have found that a very hot bath with epsom salt helps. I have been doing this for a year and get relief for up to four hours. During flares i may need 3 or 4 baths. Ive become intolerant of all meds/chemicals so dont have many options for relief. Jeannette

      • Since writing this post Iโ€™ve learned I likely have histamine intolerance. Iโ€™d recommend looking into this and MCAS. It may be worth speaking to your doctor about it? Iโ€™ve found relief from following a low histamine diet and taking supplements to help break down histamine. It wonโ€™t be the answer for everyone but thought Iโ€™d share in case it was of any help.

  4. I’m so glad that you finally have answers. I was also doubtful when my test result came back positive for Lyme. But, in my heart I know it is correct. I was upset to know that Lyme was the culprit and I now have severe heart and neurological issues due to the long wait for diagnosis. I can identify with so much of what you have written. Take care my friend and thank you for sharing my link as well. I will be sharing this with others. I’m looking forward to going through and reading the other ladies stories as well! Thank you for putting this together.xo

    • Thank you Valerie. I didn’t doubt the diagnosis, more I understood the difficulties and how complicated Lyme is to not want to have it. I guess I was hoping for a more straightforward answer. I think I’m going to write a post on how I feel about my diagnosis because I was quite taken aback by some of the emotions I’ve worked through– anger being one. It also really saddens me that there are so many like us who have developed terrible health issues through lack of diagnosis and appropriate treatment ๐Ÿ™ When it could have potentially been avoided. Thanks for contributing your links and for sharing your story ๐Ÿ™‚

  5. This is an excellent post, and I am SO happy to hear that you finally have some answers and a treatment path!! That is wonderful news.

    Thank you for linking to my post on Why Everyone With ME/CFS or FM Should Be Evaluated for Lyme Disease.

    I just wanted to clarify one point – you mention several times your positive test result (and others)…HOWEVER, blood tests are not a reliable way to rule out tick infections because they are very prone to false negatives. You were one of the lucky ones, to get a positive test result, but the very best blood tests for Lyme still only catch about 65% of the cases! As I explain in that post, this is because the Lyme bacteria does not stay in the bloodstream, and not everyone makes the antibodies (especially those of us with immune disorders like ME/CFS).

    So, bottom line, as I explained in that blog post you linked to, is that a negative Lyme test does NOT mean you don’t have Lyme (though you can believe a positive result) – the only way to know for sure is to see a Lyme specialist (LLMD) who can evaluate you for Lyme (and all of the other tick infections) by looking at test results but also symptoms, history, and physical exam – only an LLMD experienced with all of these infections will be able to recognize them.

    Finally, you did mention co-infections, but I wanted to explain that quickly. Most ticks carry more infections than just Lyme, and some of the blood tests for the other infections are even less reliable than those for Lyme. So, again, you must see an LLMD to get evaluated for ALL of the tick infections (my blog post includes links for finding an LLMD near you, even in the UK).

    I speak from hard experience. We knew our son had Lyme when he was 12 (he’s had ME/CFS since age 10), but no one ever checked for the other tick infections. He slowly got worse over the next 3 years, and we assumed it was “just” his ME/CFS since his Lyme had been treated. What we finally figured out – after more than 3 years of watching him suffer – was that he actually had 3 tick infections (Lyme, bartonella, and babesia) all along. You can’t completely get rid of Lyme without also treating the other co-infections. He is now 7 years into treatment for all 3 tick infections and doing much, much better.

    So, I would urge you and your blog readers to see an LLMD and get evaluated for all of the tick infections because there are often more than 1 present. With your positive Lyme blood test, you know for certain you were bitten by an infected tick, so chances are good you have other tick infections, too.

    Hope that helps – good luck moving forward!


    P.S. Also, both ME/CFS and Lyme cause old, dormant viruses – like EBV – to re-activate. So, you may want to also consider antiviral treatment. I stayed on antivirals the entire time I was being treated for Lyme, for that reason. Good luck & please feel free to ask any questions as you move forward – we have been through this ourselves! So happy for you to finally have some answers – I know what that’s like!

    • Thank you Sue and thanks for sharing your posts with me. I felt like I had so much to say on this topic but decided to leave it for another day, given how long this post is. I could have went on and on lol.

      I totally agree. There is no test available to reliably rule out Lyme. To be completely honest with you, I expected a negative result. Why? Simply because I have been ill for a long time and the testing is so poor at detecting chronic infections. This was actually the main reason I didn’t pursue it earlier, as I explain in this post. I think it was lucky in a way that I just happened to be experiencing a flare up and felt really poorly when I had my test done.

      If the test had been negative, I would have continued on the assumption that I had it and continued with herbals regardless but kept it to myself. However, I will say that getting the positive test has opened more doors in terms of treatment should I wish to pursue them. Without the positive test they wouldn’t have been an option for me. I think doctors in the US are way ahead and able to make clinical diagnoses, whereas that doesn’t happen here and doctors have their hands tied in many ways.

      Re: co-infections I had testing for a few but no positive results. I’m just working off my symptoms and going on the basis that at least a couple are a strong possibility. Like I said, Lyme is never alone, I’m not sure if I’ll know for sure which coinfections I have but I’m trying to cover the bases.

      I agree about the viruses too. Although my tests didn’t say I had any current infections, I’m working on the basis that exposure = possibility of reactivation. I seem to be responding well to artesunate. I believe it treats babesia, works as a cyst buster but has also been used experimentally as an anti-viral in case patients.

      Thanks for all that great info!

  6. That’s great, Donna – glad you have such a good handle on things – you seem very well informed.

    You are very right – the positive test result makes it so much easier. However, things are NOT any further ahead here in the US, I am sorry to say!! It’s the same here among mainstream doctors – no positive test, no Lyme, no treatment. That’s why I emphasize so much the need to see an LLMD – here or there or anywhere in the world. It’s crazy – the CDC clearly states that testing is unreliable & it must be a clinical diagnosis…but no doctors listen to that except the LLMDs, who have learned better. My own family doctor told me I had to go out of state to find a doctor who would treat my Lyme without a positive test result (I’ve never had a positive but have now had 3 flare-ups of my Lyme).

    Even our LLMD said he has NEVER seen a positive bartonella result – and where we live, studies have found MORE bartonella than Lyme! We figured out our son had bart from the weird symptoms that accompany it – strange rash lines that look either like stretch marks or like scratches on the skin and burning pain in the soles of his feet, especially when exercising. Fortunately, he did have positive tests for Lyme and babesia.

    Anyway, I am thrilled for you to have some answers & a pathforward. It is typical to get worse with treatment before you get better (a Herx reaction) so be prepared for that & just adjust your dose. Good luck & let me know how it goes!


    P.S. Thanks for writing such a great blog post – this is a topic that really needs to get all the awareness it can!

    • Sorry I should clarify what I meant because I appreciate most coventional doctors aren’t very literate on Lyme. What I meant was that even Lyme literate doctors here often have their hands tied unless you test positive and even then they seem to be more reserved in terms of treatment. It seems in the US there are LLMDs who are willing to diagnose and treat on a clinical basis. I have heard of many people living in the UK who decide to go to Europe or the US seeking Lyme treatment. Hope that makes more sense!

      Yeah I’ve have herxed a couple of times so far but thankfully they have been limited to a few hours at most. I think I’ve got some detox strategies in place that are helping ๐Ÿ™‚

      Thank you. I would definitely love to hear more about how you have been treating Lyme as I think there is so much value in learning from others. If you are happy to share it would be great if you dropped me an email.

  7. This was a really fascinating read, which sounds like a really flippant thing to say about something that is actually your life, but is true. I hope that having such a thorough diagnosis is the start of your road to recovery.


    • Thanks Lis, I found it all very fascinating too. I’ve spent so long theorising all of the things that could be going wrong in my body and trying my best to piece everything together. It was interesting to find out for sure and to have some reassurance that I’ve been on the right track. Thank you, I am hopeful too x

  8. Katherine Walker Reply

    Hi Donna: I had to dig to find your blog. (I hope you get this). Anyway, I came across my old Slendertone belt the other day and I thought (Hmmmmmmmmmmmm, I wonder!!!). So, instead of putting the belt around the front of me for my no can do abs, I turned the belt around and put it across my back!!! OMG!!! What a wonderful thing this was. It was as if I was having expensive therapy, only I could do it myself. I think it’s better than the gizmo you wrap around your leg (sorry, brain fog! and I can’t remember the name of that thing!). But, I thought maybe your readers would like to know about this, because it really helped my back pain! God bless!!!

    • Hey Katherine! Wow, I would never have even thought of doing this. I find the Quell (I think this is what you mean?) super helpful but it sounds like this could be a great tool for back pain. Thanks for sharing! Oh and if you would like to keep track of my blog, you can sign-up to my email list and you’ll be notified of any new posts ๐Ÿ™‚

  9. Katherine Walker Reply

    Dear Donna:

    Yes! It really worked extremely well. I love it! So, if you have a Slendertone – turn it around backwards and try it! I thought I did sign up, but I’ll definitely sign up ‘cuz I love learning new things and heaaring what others have to say! Take care!!

    • Such a simple tip for anyone who has one. I think my mum might so I’m gonna ask her as my back has been playing up a bit recently. Thanks again for sharing!

  10. hello donna. have u actually received any treatment through breaksp and how r u feeling now?

    • Hi, Veronika. Yes, I have had treatment through Breakspear. I have seen improvements in daily functioning but I still have a long way to go. If you are interested in Breakspear, feel free to email me to chat more.

  11. Hi, thank you so much for sharing your story. I have been very sick the last 3 years with increasing neurological issues with all the big things like tumours etc being crossed out but i’m still very ill and have little real quality of life for someone so young. no one knows whats wrong with me or what do with me. Anyway, my question is how did your GP take to your diagnosis, were they open to the results? did they question them or was breakspear reputable enough for them to accept what they said and the fact you do have Lyme? that’s my biggest concern, i pay to have all the tests done and then they come back but my frontline health practitioner won’t accept the fact i have it (if i do) and the only support i will ever have is just from this private facility – if that makes sense. thank you ๐Ÿ™‚

    • Hey Tori, I am sorry you have been very sick. I can appreciate how difficult it is, especially when you are not getting any answers. That makes complete sense. My GP has been accepting of what Breakspear have said and has helped me with routine blood tests that I needed during certain treatments. But I haven’t received any treatment for Lyme on the NHS and I don’t think I would. I think it would be worth having a conversation with your GP beforehand as if you go knowing you have their support, that would put your mind at ease.

  12. Dear Donna,

    Thank you for writing your blog – itโ€™s so useful to read. Can I ask what your treatment plan was at Breakspear Clinic? Did they prescribe different antibiotics as well as a herbal/diet plan? Thanks

    • Hi Tanya, thank you for your kind comment. Initially, I followed their Iodine protocol for Lyme which is herbal/supplement based. I then tried antibiotics and wrote about my experience of that here (it wasn’t for me personally). I went back to herbs and that’s when I decided to move on from Breakspear. I hope this helps.

  13. Hello Donna, I’m interested in what you have moved onto.
    I went to Breakspear for CFS/ME. I did the neutralising vaccines and herbs and vits. For me, my most debilitating symptom was the constant urgent diarrhoea I suffered from after my severe viral infection. None of the treatments really helped. I told myself it was but i was just kidding myself. My gut was really sensitive to their supplements. In the end what helped was getting EPD antiallergy vaccinations and moving onto to tricyclic antidepressants for sleep, pain, ibs and insomnia. Laterly low dose gabapentin was added and this really helped my gut pain. The NHS GI consultant said my gut had been sensitised due to my infection. Taking nerve killer meds had made a huge difference. To be honest, Breakspear cost me a fortune and for me the treatment was ineffective. Good Luck with your recovery journey.

    • Hi Steve. Sorry to hear about your health struggles and that your treatment at Breakspear was ineffective. I initially did a herbal/supplement protocol at Breakspear and, after suffering from a setback I then tried antibiotics. It didn’t feel like the right path for me. My Dr kept suggesting tests but I decided to save my money and go back to treating with herbs myself. In the end, I moved on to get stem cell treatment at Infusio in Oct/Nov last year. You can read all about my treatment and how I’ve been doing afterwards here. It’s been life changing. I still have a few issues to work on but it’s a year long process following stem cells so I am hopeful I’ll see continued improvements ๐Ÿ™‚ Thank you for your well wishes. I hope that you see progress moving forward.

  14. Hey Donna. I’ve been on your blog before but missed this beauty. How great to have a more in-depth diagnosis I’m a teeny bit jealous haha, maybe Breakspear is the way forward! Having been diagnosed with Cfs/me in 2014 it gave me something to work with but, it now feels as though my levels have got to there best. Around 2016 I asked my dr if I could be tested for mitochondria to be told the UK don’t do that test. Stupidly I left it there! I’m convinced that this is why I’m stuck, nothing I do increases my energy, the pain I can kinda manage. Kudos to you girl.. Oh, this week I found out I have cysts on my ovary & polyps in my womb, which brings me to feel there’s so much more going on in my body than Cfs/me!!! Sorry long comment, perhaps I should have emailed… Fabulous post. Sorry you’re a chronic sufferer, it sucks bad… xxx

    • Hey Jorja! It was really interesting to learn all of this, if not a little overwhelming! It’s Acumen labs in Devon who do the mitochondria testing if that’s any help. I’ve heard of so many with CFS etc who have gynae issues and I can’t help but think it is all related somehow. Good luck and I hope you find a way to move forward.

  15. Thank you for sharing about fibromyalgia. I have a friend who has this illnes and ive been wanting to find out the cause of this illness my friend tried everything already from doing diet, exercise, eating the right food, taking in vitamins and minerals and still the same same its not cured. ill be sharing this to my friend thanks for this.

  16. Hi im in Canada and have a very limited med system so the usu things are covered but tests that really dig deep to give diagnosis are not covered. And naturopathis and functional docs etc are not covered. I am 63. At 25 had 2 kids preg again and had uterine cancer. Husband was transferred for work so moved across the country. Knew no one. Had a miscarriage and hysterectomy. Spent that year at home and outside walking every day. Became ill and have not recovered. Was told a few yrs later it was fibro and cfs. Have taken all the usual treatments with limited success. Have been home for a year. Neuro symptoms have progressed and have bouts of pain alternating with poor mental function. Just saw functional doc and got test kits will deliver test specimens next week. He thinks theres more than just fibro. That diagnosis doesnt explain the symptoms. I have become reactive so have done an elim diet and cleaned the house of all pkg food gluten and chemicals including meds. PS I have always gotten relief with heat. Includes hot baths for pain and itching. Was glad i found this site. Has been a good read. Thanks Jeannette

    • Hi Jeannette,

      Iโ€™m sorry you have gone through all that you have. Itโ€™s awful when the medical support just isnโ€™t there. I hope you get some answers from your new doctor and that it helps you to find treatment that works for you. Thank you for your kind comment about my blog, I hope reading it has been helpful.

  17. Hi Donna,

    Thank you for a comprehensive and informative post! I live and suffer from ME/CFS in Poland, where (even private) medical care is absolutely underdeveloped regariding this illness.

    I consider travelling for consultation at Breakspear medical but I need more than just a diagnosis and new blood test, I’d like it to be followed with some
    possible treatment.

    I wonder if, apart from getting properly tested and receiving recommendations as per supplementation etc., did you receive some treatment and your further consultations guided your through healing plan and led to your significant improvement?

    Also, which Lyme test happened to be the most sensitive and conclusive? Since there’s plenty of them that can be done..

    Thank you on advance! Hope you’re doing fine! ๐Ÿ™‚

    • Hi, Dagna! I am sorry that you are not receiving the medical care you need. ME/CFS is such a neglected illness. I did receive treatment at Breakspear. Unfortuntately, I didn’t see the progress I had hoped and I felt like I was spending money on further testing and not getting anywhere. In the end, I decided to have treatment at a clinic in Germany. You can read all about it here. If you are looking to test for Lyme, look into Armin Labs. I haven’t personally used them but I know of others who have. At Breakspear, I had an ELISA and Western Blot (standard lyme tests) and also a MELISA at a German lab called InVitaLab. Good luck!

  18. I’m in the UK where long ago Lyme wasn’t even heard of. In 1970 I visited a friend in the USA and went out with her and her dogs tracking deer. On my way home I was ill; my GP said it was flu. It was so bad I couldn’t attend my friend’s wedding.A coup le of week later I happened to have a dermatology appointment and the young doctor noticed a perfect bull’s eye rash on my leg. He’d just returned from America so he was one of very few doctors who even knew about Lyme. I had a blood test but it was too soon to have developed antibodies so the result was negative. 6 months later in severe pain I was diagnosed with Fibro. Now, 51 years on,I am in constant chronic pain in my spine, abdomen, shoulders and legs> I have neuropathy in ankles and feet with Fibromyalgia. It’s become so bad I can barely leave the house and used a wheelchair for 30 years until my shoulders became too bad to propel it. I am 100% convinced the underlying cause is Lyme but I’ve had two further negative tests ( only after demanding them) and now my doctor won’t even consider Lyme. I’ve been told there is NO treatment for Lyme after so many years. I am told I “just” have DDD, Fibro, Maigne syndrome and peripheral neuropathy with chronic urticaria and angioedema . Take the painkillers and get on with it! I have no fight left.

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