Recovering from Lyme disease & getting back to competing

Feeling abnormally tired, with joint pain and burning muscles, Lucy Bulmer was admitted to hospital numerous times and several times had to jump off competition horses with searing chest pain, believing she was having a heart attack. Fortunately her sister’s research led her to learn about Lyme disease and to find Breakspear Medical.

Excerpt from Breakspear Medical Bulletin Issue 34:

My name is Lucy

My name is Lucy. I am 34 years old and live in Yorkshire. I am a horse riding instructor and I train and compete with dressage horses at National Level. I have late-stage Lyme disease.

Various symptoms started 15 years ago. I was fit, ambitious, teaching and competing with 5 horses, but I started to feel abnormally tired, my joints hurt, my muscles burned, I suffered with chronic diarrhoea, I was always freezing and I felt like I had permanent flu.

After a trip to Kenya in my teens, I had contracted cerebral malaria,  I began to wonder if it was related to that. Blood tests showed nothing other than anaemia (low iron levels). I was given iron tablets and thought that would help.

Around this time my father died of bowel cancer.

My symptoms increased; I was admitted to hospital with suspected viral meningitis. I also suffered with glandular fever, shingles and several bouts of tonsillitis, which eventually led to a tonsillectomy. Unfortunately, I had a haemorrhage after this, lost 5 pints of blood and needed a transfusion. (But that’s another story!)

My symptoms became “bizarre”

Following this, my symptoms became quite varied, bizarre and often scary. I kept losing my sight and hearing. I had permanent pins and needles in my arms and legs and limited feeling in my left leg. One side of my face started to droop.

Several times I jumped off horses with searing chest pains, believing I was having a heart attack.

If I slept, I would wake up paralysed from the waist down, or paralysed down one side.  Luckily, the feeling came back, but I stopped going to bed, just in case.

I went back to the doctor and she said I was depressed. Damn right I was! I was eventually diagnosed with ME (myalgic encephalomyelitis) and offered Cognitive Behavioural Therapy. I declined.

My horses were the main reason I kept going, but as my condition deteriorated, I knew I had to make some big decisions regarding work.  Sadly, my most talented and successful horse had to be put down after an accident. I then found riders for my other horses and sold our family home where I ran the business. But I didn’t give up! I just downsized my life.

Finding the treatment I needed

I put the remaining horses in a livery stable (where care, feeding and stabling were provided) to ease the demanding physical side of things. Thankfully my sister employed me in her shop to enable me to earn some money.

It was my sister’s research that led me to learn about Lyme disease and then led me to Breakspear.

Prior to my sister’s investigations, I had never heard of Lyme disease. From then on, everything began to make sense. Years previously I had 2 unusual bite marks on my arm. I also remembered ringing the NHS helpline regarding a huge rash that appeared late one evening. They put it down to an allergic reaction. Nobody made the link to the bull’s-eye rash that is a common sign of Lyme.

At that time, I found a local doctor who specialised in ME and Lyme disease. He started me on the road to recovery and gave me my first signs of hope in the form of antibiotics. He no longer practises, but he is another person to whom I am grateful.

Breakspear is a long way from my home in Yorkshire. Thankfully my grandma said she would help financially if that is where I needed to be and it is definitely where I needed to be.

I have now been treated at Breakspear for 2 years. At the clinic, I have had a variety of tests done for Lyme and co-infections and a few other tests including viral panels, immune profiling, and a fatigue panel. I have also seen a specialist Autonomic Neurophysiologist.

From these results, a personal treatment plan was formed for me. I started on a Palaeolithic diet and began low-dose immunotherapy. As my gut improved, I was introduced to a variety of nutritional supplements, alongside a combination of antibiotics, and so began the long journey to try and regain my health.

I have been ill for a very long time. I still have Lyme, I still have a dysfunctional nervous system and I continue to suffer with arthritis (but luckily I think riding helps!). Their findings have managed to get to the root of each problem and build on it.

I am slowly getting stronger. I now continue to improve with my little fairy steps. I am determined.  I have learnt so much about how I can help myself along the way. Good nutrition is vital for body and mind and also, sometimes it is important to stop and rest, which does not come easily to me!

The treatment continues, which changes and alters depending on my latest results.  John Wayne said, “Courage is being scared to death and saddling up anyway.”

I continue to work in the shop and I have started teaching again. The dressage competition season has begun and it is brilliant to be part of it again.

I have the best support network and that is vital: my mum, sister, trainer, owner and groom, who have always supported me, even when it seemed as if I was going insane. I have even managed to bag myself a boyfriend! These special people make it possible for me to move forward. I hope one day I can repay them.

If I have a bad day, I think back to the early days when I wondered if I would make it through the night, how I was going to make it from the bed to the shower, when it hurt to brush my hair, when I sat on the roadside because I couldn’t make it 10 yards back to my house. I remember clambering on a horse, hoping that adrenalin would take over. I remember breaking down in the shop because I didn’t even have the stamina to fold jumpers. I realise how far I have come; Breakspear has played a huge role in this process and will continue to do so.

Update on Lucy’s story

After a difficult period during the pandemic, Lucy found inspiration and started a new business with her sister, called Luce & Bear. Driven by values of family, nature, and wellbeing, they aim to create thoughtful products that reflect what’s truly important.

Lucy’s health journey with late stage Lyme disease inspired the signature SOS print seen on their popular Healing Hoodie and other items. The print incorporates meaningful symbols designed to provide comfort, strength and optimism to the wearer.

Luce & Bear has been featured in the Yorkshire Posts Style Magazine and more recently Living North Magazine. Learn more about her emerging brand’s vision and products by visiting the Luce & Bear website.

We wish Lucy and Clare the very best with their healing business.