Craig’s Lyme Disease Nightmare

I met Craig Fordham at the Wilderness Gathering where I and my friend Clive had a great chat with him about the outdoor industry and people we knew in common. Amongst many roles he enjoys, Craig is now a Craghoppers Brand Ambassador. The discussion turned to risk and how to manage it in the outdoor environment. With Craig’s role at Black Wolf Survival & Bushcraft, it promised to be interesting.

In fact, it was shocking as he talked frankly about his experience with Lyme Disease. It and the problem of tick bites have received a lot of media attention in recent years but we had no idea how debilitating it could be. Most of what I had read was very practical with no depth regarding the reality of infection.

Returning home, it was a no-brainer to ask Craig if he would share his experience with a wider audience. It was no surprise that this generous-spirited man spoke freely and frankly in answer to my questions and I thank him for sharing so openly. He’s quite a character and it has been a privilege to hear his progress on the painful journey he has endured. It’s a harrowing tale.

Before contracting Lyme Disease, how aware were you of the issues/risks?

Before contracting Lyme, my knowledge of it was limited. I’d read how it nearly ended Ray Mears’ career with the pain it caused him and my own father-in-law had been diagnosed and treated for it a few years previously.

He was still having issues related to Lyme as well. My knowledge of just how serious and debilitating it could be was very limited though. I had on occasion removed ticks from people on courses and events but was unaware of the possible consequences of being bitten.

When did you discover you had been infected and how was the process of diagnosis?

I wasn’t diagnosed until late November 2017. I had been ill for a good few weeks with what felt like a severe bout of flu that started on a trip to North Wales where I had been doing some white water canoeing under the guidance of canoe maestro Ray Goodwin.

I felt so bad I had to cancel the course after the first day and spent a couple of days resting up in the B&B before slowly making my way to my sister’s house in Shropshire for another couple of days before feeling just about well enough to drive back to Kent.

A week or two later, I was no better with aches, fevers, shivers and nausea so went to the GP who initially was concerned I had Weil’s disease (leptospirosis). This, thankfully, wasn’t the case but a friend had suggested Lyme as I was mirroring a range of symptoms connected with Lyme.

The GP agreed to run the blood tests and, a few weeks later, the results showed not only that I was positive for Lyme Borelliosis but that it wasn’t a new infection. The chances are it had been in my system a while. There was no way of knowing for sure when I had been bitten as I hadn’t seen a tick or had the EM bullseye rash that some people get.

Having worked in the outdoors for nearly three decades, it’s impossible to know for sure where and when I was bitten but we think it may well have been when I was running a course in southern France in 2015 as it’s a real tick hotspot out there.

What treatment was needed?

Due to the lack of information about Lyme, including that available to GPs, the only treatment I was offered was a three-week course of Doxycycline oral antibiotics.

Whilst there is now research to show that Doxycycline can be very effective in the treatment of Lyme in its early stages, there’s also information to show it’s ineffective if you’ve had the bacteria in your system a long time so the doxy had little effect on me feeling any better.

How were you affected?

Over winter and into 2018, I felt no better and my symptoms started to worsen. I felt tired all the time, had constant aches and pains but worst of all was the start or some neurological problems such as ‘brain fog’, forgetting things, feeling a little lost and confused and really not with it.

I also started developing a stammer, especially when I was tired or stressed. This got gradually worse to the point where, in May 2018, I was taken into hospital with a suspected stroke. The stroke team said I hadn’t had a stroke but there were neurological problems going on and referred me to a neurologist.

At this time, I had also started to speak to various people from Lyme Disease UK. It’s a charity run by Lyme sufferers to support those battling Lyme and I was hearing a multitude of horror stories about people being misdiagnosed or hitting brick walls with treatment.

A second blood test showed that the Borrelia was still very much in my system so, after an initial meeting with a neurologist in July 2018, I was referred to a senior specialist. Eventually, in November 2018, a year after being diagnosed with Lyme and having spent a year getting worse with my condition to the point where I was struggling to work at all, I was admitted onto the neurology ward at Canterbury hospital.

There I was given a lumbar puncture by junior doctors that went so wrong it took 13 attempts to get the needle in and left me bedridden for a couple of days unable to walk properly. The senior neurologist there decided to fit me with a PICC line – essentially a cannula that’s inserted into my upper arm and goes up a main vein into my heart.

A valve on the outside meant that the hospital could attach an IV drip and put a high level of intravenous antibiotics directly into my heart and blood stream daily for a month in the hopes of killing the bacteria.

As you can imagine it’s not the nicest of procedures and even though I was allowed to go home I couldn’t work or go out much for a month and had to have two grams of IV antibiotics daily. This massively weakened my immune system and caused lots of pain and discomfort including chest pains. On a couple of occasions, I had to go into hospital with chest pains.

My PICC lane came out on the 21^st December and on the 26^th December I was taken into hospital by ambulance with chest pains. They said I wasn’t having a heart attack…

I was still having speech and neurological issues so was referred to a consultant neuropsychologist who said in layman’s terms that the bacteria had gotten into my central nervous system and had ‘messed up’ my wiring. Whilst it would now always be this way, he hoped he could help me work with the new wiring and make things better. I continue to have regular sessions with the team.

As far as the heart goes, I was referred to a cardiac team who ran a series of tests and eventually, in June 2019, I had an angiogram that showed a “worrying narrowing” of one of my arteries in the heart, the cardiologist ordered an angioplasty procedure where they would have a better look inside and probably place a stent in the artery to open it up more and allow better blood flow. I was also placed on blood pressure meds and given a GTN spray.

In July 2019, during the angioplasty, the doctor noted that I’d actually had a plaque rupture event, which basically means a heart attack! They decided not to put in a stent at this stage but started me on a whole series of drugs and medication and a referral to cardiac rehab.

How are you feeling now?

 As we stand in October 2019, two years after being told I had contracted Lyme disease, I have to take nine different pills a day, I have to carry a GTN spray with me at all times, I have a heart monitor strapped to my wrist with built-in alarms if my heart rate goes too high or too low. I have physical rehab sessions twice a week, see a cardiac nurse twice a month for monitoring, a cardiologist once a month at the hospital for check-ups.

I also have counselling from the cardiac team to deal with the psychological issues that often arise after a heart attack. I see the neuropsychologist twice a month as well to help with the speech and other neuro issues and I’ll probably be on various medications for the rest of my life now.

We can’t say for 100% that Lyme caused the heart attack but there’s increasing research to show links between Lyme and carditis so there’s every possibility it was partly responsible for my heart attack.

I continue to work as much as I physically can in an industry I love but have to be more careful about how much I do now. I also try to do what I can to help promote awareness of Lyme to the outdoor industry especially and help support people going through similar situations to myself.