Getting my life back, after Lyme disease

Suffering unexplained pain, Con Derham feared the worst because all the usual test results said he was fine. Finally, an appointment with Jean Monro revealed he had Lyme disease. In this blog, we re-share his enlightening story of recovering from Lyme disease.

Excerpt from Breakspear Medical Bulletin Issue 35:

Getting my life back

As a young man, I was a very healthy lad who enjoyed lots of sports. My week was filled with football training, 5-a-side, golf and squash then ready for a footie weekend with matches both Saturday and Sunday.

Then along came a serious relationship and with marriage came the realisation that my interests would have to be more balanced. When I reached my late 20s, I gave up football, and working away from home for long periods in hotels took revenge on my waistline.

As I reached my mid 40s I would suffer occasional bouts of fibromyalgia in my back. The pain would be so intense that I would take myself off to bed. Then in my late 40s I started to get fasciculations (involuntary muscle contractions) and burning pain in my calves. The fasciculations would move around my body, arms, legs, even my face, becoming worse at night ensuring that I got very little sleep. Simple pain medication did not touch the pain and I was loath to try anything stronger.

I consulted “Dr Google” to try and make sense of my symptoms and my world shook when I read “ALS” (Amyotrophic Lateral Sclerosis), which matched my symptoms.  It is a condition whereby your muscles cease to function and eventually death is by suffocation.

To say I was scared would be an understatement

Fortunately, as I had private medical insurance, my GP referred me to a neurologist who performed several tests. He assured me that I did not have ALS and concluded that I was probably suffering from stress. Relieved, I tried to get on with my life and tried to snap out of my depression. It worked for around 3 months, as the fasciculations died down.

The spasms then returned stronger than ever later in the year and fear gripped me again.

The neurologist ordered a full brain and spine MRI. The test results were good; he ruled out MS and said there was nothing wrong with me. He then suggested a course of antidepressants. I did not want to admit that I could be so stressed or depressed. I politely refused the drugs and went home to my long-suffering wife.

Looking back, I really feel for my wife and children, as I was a changed man.  I was withdrawn, surly and relying on the emotional crutch of alcohol.

Over several years, I suffered many different symptoms: chest pain, very slow heart rate, light headedness, feelings of being completely detached from the world, suddenly feeling as though the floor was about to meet me!

Every time I sat down, I felt as if I was sitting on broken glass and could never relax. My blood pressure suffered and I was put on medication. The bouts of light headedness were particularly scary when I was driving. During one episode I had to pull over on the motorway and call for assistance. I was taken to Northampton Hospital where they put the episode down to my blood pressure tablets. I became a frequent attendee at A&E, only to be discharged each time with a normal ECG and cardiac bloods.

As time went on, I started to become lost in my symptoms. It took a heavy toll on family life, as I just withdrew, convinced my life was over.

I always look at this part of my journey as fate. My wife is a nurse manager and she moved to Breakspear Medical Group and loved the place. She would come home telling me of all these incredible stories of how people who had been abandoned by their doctors had found hope and solution at the clinic. She asked me to come and see Jean Monro.

When I met Jean, I was at my lowest, both mentally and physically, and I had no energy. Only my pride and will power stopped me taking time off work.

After my initial consultation, Jean recommended a series of tests, which included specialist neurological tests with Dr Peter Julu.

It was strange that in all those years under various consultants and doctors, I had only ever had 1 blood test and that was to check for arthritis.

The tests were many and I just could not do justice to explain what they were. I felt that here was someone who was taking me seriously and not writing me off as a hypochondriac. That in itself made me cry. At last, someone believed me.

With the tests results and after fully investigating my history, Jean concluded that I was suffering from Lyme Disease. I wanted to cheer but was not sure whether that was good or bad!

I had read about Lyme Disease, but it was always reported that transmission of the bacteria was through tick bites from deer. I had not visited the USA, Canada or the Rockies so where would I get a tick bite from a deer? But I learnt that Lyme can be spread from any tick, and I had played a lot of golf in my time. I recalled many holidays in the New Forest and Suffolk.

I started my treatment which included a course of antibiotics and supplements over 6 months, IRATHERM (hyperthermia) sessions and no alcohol!

As I wanted to get better, I followed the instructions to the letter over the next 9 months and my symptoms started to wane.

I lost nearly 5 stone and no longer needed the blood pressure tablets. I was going to the gym 5 times a week and doing 1-2 hour sessions! Overkill? Yes, but when you remember what it was like to have good health taken away from you, you just want to prove how well you really are!

I’m still under Jean’s care and about to start a 2nd course of treatment to optimise my health and am looking forward to being boiled in the bag on the IRATHERM again.

On learning more about Lyme, I was so, so lucky that I found Breakspear Medical and the superb talent, skill and dedication of Jean and her team. Lyme is a crafty critter and unchecked can lead to life-limiting symptoms. There are many doctors who are simply unaware of Lyme and worse still, some refuse to recognise it.

Lyme disease is very adept at masking itself from the body and the power of antibiotics. If there are people out there who see some of my symptoms in them, come to Breakspear, as without Breakspear, I would not have my life back.

Thank you Jean and all the team, especially my wife Anne.