Beth’s Lyme Story

Over the last 4 years I have had a total of 3 surgeries, 8 invasive medical procedures, spent over 6 months in hospital and have had 3 trips to the USA for medical treatment. I have only just started my very long road to finally getting better…

My health story began when I was just 14 years old when I had suspected appendicitis. I had not long returned from an outdoor camping trip but at the time I didn’t see this as being significant. I have always been the outdoor adventurous type. I had my appendix taken out but I did not recover as expected. I continued to be misdiagnosed over the following 12 years of my life. I was out of school for 6 months as a result of thyrotoxicosis, asthma and what doctors told me was chronic fatigue syndrome. I eventually got back to school, college and University. I even managed to do some traveling. This did not come without health problems and over the years I have struggled with Hashimoto’s disease, IBS , hip tendonitis, frequent infections, asthma attacks and symptoms that the medical profession could just not explain. I was fatigued constantly which I assumed was just a ‘normal’ way of life when you are a busy student. Little did I know that all of these things could in fact have a root cause. This ‘mysterious’ root cause continued to damage my body, puzzle the medical profession and made me more and more disabled.

I was on my final ever nursing placement when I started to experience severe vertigo attacks. I had just turned 23 and it was a day that my life changed forever. When I returned home from placement I collapsed as I walked through the front door as I was too dizzy to even stand anymore. The world was spinning and I couldn’t move without throwing up. My GP thought it was just labyrinthitis and encouraged me to get back to University and continue applying for nursing jobs. I got offered two dream jobs as a paediatric nurse and despite the fact I could barely move my head I was over the moon. Little did I know that the following 4 years were going to be the biggest fight of my life.

 

After 6 weeks I was referred to an ENT doctor but kept being dismissed and told ‘I would just get better’. I would love to tell them how wrong they were. After 6 months of not being able to work I knew that there must be something very wrong. I had balance tests which showed I had lost the balance function in my right ear. I was told it was straightforward to fix with physiotherapy but this just made me sicker. In March 2014 I got a second opinion and scans revealed I had a rare inner ear condition called superior semicircular canal dehiscence (SSCD)…finally!  I was so relieved to have what I thought was the answer to all my problems. If only.

one of over 10 scans…

In September 2014 my health hit rock bottom and I was admitted to my local hospital with dehydration as a result of severe vomiting. This was put down to dizziness and not investigated at all. I spent 2 months in hospital before having my first surgery to repair my inner ear and what we thought was causing all my debilitating symptoms. I managed to get home a week later but it soon became obvious that it hadn’t worked. I was in fact in a far worse state. I was admitted into hospital again in December before having a second ear operation in Feb 2015. This didn’t make me better. I was completely bed bound at this point, too dizzy to even move around the house let alone look after myself properly. I was completely desperate for help.

Assuming that the unfixed SSCD was the cause of my ongoing problems I began researching surgeons abroad who could help me. This is when I came across Dr Daniel Lee at MEEI in Boston. As I was out of options on the NHS the decision was made that I would travel to Boston to have a third surgery on my ear. This surgery was no walk in the park and would cost over £70,000. My amazing brother, Tom, set up a fundraising campaign (www.gettingbethbetter.com) to help cover the huge costs. I can’t put into words what an incredible time this was, to see my friends, family and complete strangers come together to raise money to help me get better. We raised nearly £60,000.

The surgery went as planned and I even noticed some small improvements in my balance after a few weeks. However, things quickly spiralled downhill and in September 2015 I was admitted back to hospital again. Just like before I was suffering with severe dehydration due to constant vomiting. This could no longer be put down to my ear as this had been fixed and I continued to puzzle every single doctor who met me. I lost so much weight that I was put on TPN (nutrition that gets pumped through your veins). I was referred to London for specialist scans which revealed I had severe gastropareis: delayed stomach emptying. Yet another rare condition. I’ve had 7 PICC lines and now have a port placed in my chest (central line), to continue giving myself IV fluids at home. 2 years as a qualified nurse and the only patient I’d looked after was myself. Surely there was a cause for all of this?

Following further tests in London I was also diagnosed with a condition called POTs: an autonomic condition where your heart rate shoots up when you are up right. This was making me almost pass out every time I stood up. This then lead to another diagnosis of Ehler Danlos Syndrome: a connective tissue disorder. Then Mast cell activation disease: an immunological condition which causes severe allergic reactions. I also kept getting mysterious infections which would land me in hospital barely able to talk. My immune system was shot to pieces and I was getting weaker by the day. I couldn’t understand why so many things were going wrong. Why was I still dizzy despite a successful surgery? Why all of these rare conditions? I wasn’t prepared to be told that there was no longer a cure. I couldn’t just ‘accept the way I was’. Surely there was an answer. I kept fighting for a cure.


As conventional medicine options had supposedly ran out I opted to see a naturopath at the Hale clinic in London. Best decision of my life. She took one look at me and my history and said ‘I think you have Lyme disease’. I looked at her completely blankly. Lyme disease?! I didn’t even know what this was exactly and not to mention that this could actually be the cause of all of my problems. I left feeling even more puzzled than ever but after 2 months I finally decided to get tested privately for Lyme disease and co infections.

 

In the meantime I had returned to Boston for vestibular therapy as I thought this might be a way to push myself forward to getting better. I didn’t think Lyme could really be very significant. After SSCD surgery you lose the function of one of your balance canals so your brain has to learn to compensate. Made sense. Despite vestibular therapy my brain could not compensate. 2 weeks into my trip my blood work came back positive for Lyme, Bartonella and Ehrlichia. This is when everything started to make sense…

 

After doing some research I started to question whether everything I’ve been through since my camping trip was all down to Lyme disease.  Turns out it is. I found a Lyme disease Dr in NY state and traveled there for treatment in December 2016. My mind was completely blown by this doctor’s deep understanding of my entire health history. To him I wasn’t a ‘medical mystery’ at all, just another patient who had been misdiagnosed time and time again. My health puzzle was complete. I’d found the answer I was looking for for over 10 years of my life.

I spent 6 weeks in the USA having treatment at the Stram Center. A place full of hope.  My health needs were understood on a level no one else had ever got. My Lyme disease journey is very much only beginning and I have an incredibly long way to go. Being so ill for so long means there is lots of things to fix. But it is possible and I am putting everything into it! I haven’t had any setbacks and continue on my treatment plan in the UK, working alongside Dr Stram. I have the amazing support of people I have met on my journey and greatly appreciate the support of LDUK and their support group. With little help from medical professionals in the UK it really is a lifesaver to have people who truly understand what I’m going through.

This is my story and I hope it can help anyone else out there reach out for help if they think they are suffering with Lyme disease. Please contact me if you have any questions about my history or treatment! 

bethanyrye21@gmail.com

 

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