I am very happy to introduce Hannah, who I connected with through my Instagram. Hannah and I are both Londoners, and both live with the same conditions of fibromyalgia and Hypermobile Ehlers-Danlos syndrome. Hannah is also living with Lyme disease, and it was this that I particularly wanted to talk to her about as it such a difficult condition to get a confirmed diagnosis of in the UK (and elsewhere), and also difficult to treat. I'm very grateful to Hannah for taking so much time to write detailed answers to my questions and I know that it will be helpful to so many.
Shall we begin with a little bit about you? Can you tell us your name, and where you are from?
Hi everyone! Thank you Claire for wanting to feature me on your blog. You’ve interviewed some amazing advocates and I’m very happy to be included within them!
I’m Hannah, I’m 31 years old and originally from Yorkshire but now living in London.
My current formal diagnoses from the NHS are: CFS / M.E., Chiari Malformation, Coeliac Disease, Fibromyalgia, Hashimotos Disease and Hypermobile Ehlers Danlos.
I’ve done a lot of work in the last year to understand the root cause of my CFS / M.E. and Fibromyalgia symptoms and believe the CFS / M.E. was caused by chronic viruses (my symptoms started after a bout of Glandular Fever that I never shook) and the chronic nerve pain caused by untreated Lyme Disease. For this I used an independent clinic called Breakspear Medical who specialise in environmental factors and how they impact our health.
What made you set up your very successful Instagram account? Has it helped you in your journey with chronic illness conditions?
I set up my Instagram in March 2019 because I was fed up and frustrated with my conditions just being ‘managed’. At that point, I’d had chronic pain for about five years and fatigue for about six months and I wanted to understand exactly why.
Whenever I asked my doctors why I was experiencing these symptoms their answers were too vague and fuzzy – things like ‘we aren’t sure’ or ‘sometimes this just happens’. I knew then that I had to take responsibility for my own health and dig deeper to find the root causes.
I turned to Instagram for answers and I attribute pretty much all of the progress I’ve made in the last year to the Insta community and the amazing people within it. I’ve learnt so much about different illnesses and how to approach them, I just hope I can pass some of this knowledge on through my social media accounts.
How do you manage your conditions? Are there any lifestyle treatments or self-care routines you find beneficial?
For Fibromyalgia I currently take 100mg Pregabalin twice a day and have Lidocaine infusions regularly. Lidocaine is a type of anaesthetic and it works to calm down the nerve signals and reduce nerve pain.
I am just about to start trialling CBD oil and topical balms for my Fibromyalgia and hEDS joint pain. The CBD market is a crazy one and it took me so long to navigate it and find a brand and products I trust to be high quality. I’ve heard such good reviews about CBD for chronic pain and hopefully it will help me too.
The best thing I did to treat CFS / M.E. was a three-month course of Aciclovir which is an anti-viral. It helped my body fight the chronic viruses, it really improved my fatigue and stopped the general flu like symptoms and malaise which I’d had constantly for about a year.
Some more general / lifestyle choices which have helped me are:
Healing my gut – your immune system is 80% made in your gut. My gut was totally broken with allergies, intolerances and Candida overgrowth to name a few so focussing on healing it has helped me a lot.
Supplements – supplements are great but before I knew it I was taking tens of supplements three times a day and feeling no benefit. I was overloading my body and it wasn’t able to absorb everything properly. I stripped everything back to the essential things I needed based on test results and feel much better for it. Always choose a good quality vitamin brand too, one that doesn’t buffer its products with random ingredients! My faves are Pure Encapsulations, Jarrow and Solgar.
Exercise – I can’t exercise often at the moment due to my low energy levels but, before I had CFS / M.E., exercise was the one thing which consistently improved and helped me manage my pain levels. I think it’s a mixture of movement, happy endorphins and also those nice muscle aches from working out distracting from the chronic pain.
Diet – I’m sure you all know this one but its true, a clean diet really does help my symptoms. I used to be an emotional eater big style. I had a bad day or was feeling unwell so I’d eat something I loved (like pasta or pizza) and I’d feel even worse and create a vicious cycle. Now I eat clean, whole foods (organic where I can access and afford it) and felt the benefits of this lifestyle switch within a few weeks. My energy levels were better, I felt fuller for longer and happy after eating and I even lost a few pounds!
You were recently diagnosed with Lyme disease. What made you suspect that you may be living with Lyme disease and get tested?
I hadn’t even heard of Lyme Disease before joining Instagram. Whenever I talked about my neurological symptoms (nerve pain, numbness, tingling, facial weakness) or how my illnesses had progressed I’d have someone message me and say ‘have you considered Lyme?’. It took me a good few months of receiving these types of messages before I took them seriously and began looking into Lyme myself.
I do remember having a tick bite and a bullseye rash (the tell tale sign of Lyme) about three months before my nerve pain symptoms started but I, nor my GP, had any idea what that could mean and how dangerous it could be. It’s my biggest regret that I left that rash and didn’t do anything about it!
Detailed and useful resources about Lyme are scarce to say the least, but some of my favourite ones are:
It is difficult, in the UK at least, to have appropriate testing for Lyme. Did you face hurdles with this process?
It is difficult everywhere to find accurate Lyme testing – statistics show that the Lyme tests available at the moment are only about 50% accurate!
Many Lyme tests rely upon the body producing antibodies – something which doesn’t always happen in patients who have suppressed or damaged immune systems or in people who have been unwell for a very long time.
People within the UK Lyme community believe the current NHS testing is much more accurate in patients who were recently bitten and still have an acute infection which the blood test can easily detect. However most of the time people have no idea they had a tick bite and therefore Lyme Disease is allowed to take hold for months or years – in these cases the NHS testing usually comes back negative.
I was tested by a German lab named Armin Labs, ran by a doctor named Armin Schwarzback who is an Infectious Diseases specialist and one of the best in Europe. A UK company called the Academy of Nutritional Medicine act as a conduit between the patient and Armin, help arrange testing and help you interpret the results to a basic level.
Did you have to do a lot of research on Lyme to access the best treatment? Are your doctors receptive to this? Has your diagnosis of living with Lyme disease led to new treatments and is it difficult to access these?
The NHS does not believe in chronic Lyme and are not really receptive to conversations about it – the last time I saw an Infectious Diseases specialist he ripped up my Armin test results in front of me and told me I was a mug.
This is the same globally – patients with chronic Lyme have to fight and pay out of pocket for every bit of care and treatment they need.
Armin Labs test results are not accredited in the UK so the NHS and private specialists do not honour them. Instead I decided to use Breakspear Medical who do believe in chronic Lyme. I chose to try two three-month courses of oral antibiotics. I stopped antibiotics about four weeks into the second course due to side effects and I’m now taking a break and deciding what my next treatment should be.
The problem with Lyme once it has left the acute infection phase is that the bacteria leaves the blood stream and burrows into the body’s tissues – at this point it is extremely hard to eradicate. There are no treatments proven to be effective and no tests to show that Lyme has completely left the body. Patients are left to trial a multitude of treatments (e.g. antibiotics, herbal remedies, ozone therapy, bee venom therapy) alone and to work out what works best for them, ultimately the most I am hoping for is to have Lyme in remission.
What would your advice be to someone that suspected they may be living with Lyme disease? Have you any advice in advocating for yourself during the diagnosis and treatment journey?
It is extremely hard believing you have an illness which most medical professionals think is a load of rubbish. Even when I am seeing a doctor about one of my other conditions, because they’re all interlinked Lyme always comes into the conversation and it is so awkward!
It is difficult to have to constantly defend your choices, but you know your body best. If you believe in something, stick to your guns with everything you have and fight for the care you deserve.
My advice to anyone considering Lyme would be to take your time to research it properly, how it is contracted, its symptoms and progression etc. and move onto testing once you are certain it could be impacting you. Testing is very expensive and if you have any doubts that money might be better spent elsewhere within your treatment.
Also know that if you get positive results a very long and expensive road of trialling various treatments will follow. I always tell people to ask themselves whether they’re in the right position and head space for that.
Before I tested I had no idea I’d have to pay for treatments myself, I naively thought the NHS would help me. It was a massive shock to learn I’d have to fund everything alone (especially because I had limited money as I was off work on sick) and it has been very difficult mentally and physically trying to balance what I need treatment wise with what I can actually afford.
It’s all down to personal choice – some people may decide they’d rather know even if they can’t afford any treatment and some might not. Hopefully I can help people make informed decisions and the right one for their personal situation.
What do you think is next in your health journey and your advocacy work on social media?
That’s a big question!! Health journey wise I am embracing more holistic approaches nowadays. I am currently working to cleanse my body of the built-up toxins (heavy metals, mould, parasites etc.). This will take a fair few weeks to do safely so I’m slowly working my way through everything. I’m also focussing on getting my self back to work at some point within the next few months, so hopefully that goes well!
With regard to social media, I would love to be able to build something more meaningful from the platform – something more formal and with a structure to help others. Right now I need to focus on getting my own health into a place where I can then share my knowledge and energy and hopefully help others who are struggling like I was. Instagram has its pros and cons but for me a massive part of my heart and health is in my account now and I’m so grateful to everyone for joining my journey and sharing their own with me.
Thank you so much to Hannah for giving us such a detailed and helpful insight into living with Lyme disease and the avenues to a diagnosis, and treatment options.