During Lyme Awareness Month, we’re sharing some stories of people who have suffered with Lyme disease.
These stories demonstrate how it can affect anyone. They also show how many people struggle to get the help they need.
Matt Phipps spoke to our Charity Manager, Rosie and shared his story back in March.
He’s not sure exactly when he caught Lyme disease. He was serving in Germany in the RAF in 2009 when he first recalls being bitten by a tick.
He noticed it whilst showering and was shocked, but removed it and didn’t notice any symptoms.
“I didn’t have any knowledge about ticks at the time. It’s a pretty horrific thing to look down in the shower and see this creature half embedded in your calf muscle. “Matt as quoted on the Chronic Comeback
About a year later, he was cycling in the Cotswolds when he noticed a small tick in his leg. Again, he removed it quickly and didn’t suffer from any immediate symptoms.
The health downturn
He was fully active over the next few years, serving all over the world in the RAF and playing lots of sport.
In 2018, he was living in the States and his health took a downturn. He suffered with severe fatigue and muscle weakness, and couldn’t stand up for more than a few minutes at a time.
“You start questioning yourself. One day, it struck me. I sat on the floor on the gym and I couldn’t stand up anymore. It’s such a strange feeling. It just feels like your body has run out of energy. That’s when the classic rollercoaster of seeing doctors began.”
Various and extensive scans and tests were carried out in the US healthcare system – including Lyme disease. These came back clear. Doctors couldn’t find any cause for his symptoms, and told him nothing was wrong with him.
He struggled to manage the energy for his work life, and to be there for his wife and young kids.
For Christmas 2018, his wife bought him an appointment to see an integrative medicine doctor. One of the tests they ordered was a western blot, which came back positive for one of the markers related to Lyme disease.
Normally, it’s required to have multiple markers flagged on the test. But based on this result and his clinical symptoms, the integrative medicine doctor diagnosed him with Lyme and he began antibiotic treatment.
After a course of doxycycline he felt around 30% better. He also had treatment with herbals and supplements.
He is currently seeing benefits from a carnivore diet.
“My fatigue levels went from around 80% to 25%. I still have good days and bad days“.”
Matt still isn’t sure whether he caught Lyme more recently to when his symptoms appeared, or whether his immune system was fighting the infection all this time before becoming overwhelmed.
Looking forward with hope
Despite struggling with his health so badly, Matt has launched a successful business with his wife on Amazon and is looking forward to continuing on the path to recovery.
He returned to the UK in July 2020 and has recently had some further tests carried out by his GP to see if the western blot shows a positive this time around.
Although his story has a more hopeful ending, Matt realises that not everyone is in a fortunate position like him to afford to pay for a private integrative medicine and treatments.
Also, they shouldn’t need to. This care should be available on the NHS.
You can hear more from Matt at our Talking Lyme patient panel discussion event on Thursday (only a few places remaining) this week, or via the Chronic Comeback YouTube channel.
Help us change stories like these
Stories like Matt’s are more common than not among the Lyme community.
It shows that even fit, active people with access to the very best healthcare struggle to get the help they need.
Patients need to be believed, and they need access to more accurate testing, better treatments and more knowledgeable medical professionals.
We can achieve all of this through research. Only objective, scientific evidence will change the way the NHS manages Lyme disease.
Please donate to our research fund if you can.