Battling Back from the Edge in 2021

Battling Back from the Edge in 2021 – my continuing Lyme Disease saga…

Battling back from the edge has been quite a challenge in 2021.

The edge came back in the first decade of the 21st century, when I was fighting a horrible, undiagnosed health problem. No one could tell me what was wrong with me, but they could all tell I was sick. And when I finally did get the correct diagnosis, it was from a retired doctor who was no longer licensed to treat any disease. In fact, the BC College of Physicians and Surgeons had put him under such extreme pressure in their heartless battle to quash any suggestion that long term Lyme Disease existed that he surrendered his license and retired, a move that may well have saved his own life.

Once diagnosed, the story that so many of us are familiar with began for me – I could not get any treatment other than pain management. Even that was insufficient (and still is), but at least it kept me somewhat sane.

After I got Lyme Disease, I could not sleep. I spent most nights sweating profusely and resting the best that I could. But any sleep was very short and unsatisfactory.

It was only after a visiting doctor proscribed Lyrica that I finally had my first good night’s sleep, after almost two years of being misdiagnosed, denied, and treated with the wrong medications. It really is a wonder and only by the grace of God that I didn’t go insane! The only problem with Lyrica – aka Pregabalin, is the dizziness and fatigue that is so common, which is why I eventually switched to Gabapentin, which I tolerate a lot better.

My health deteriorated to the point that I could do very little of anything. My head hurt terribly, and when I tried to do any work on the computer, read, or do any bookkeeping, it became too extreme to continue.

Furthermore, the fatigue was awful. My whole body rebelled whenever I tried to do anything. It was at that time that an infectious disease specialist diagnosed me with Chronic Fatigue Syndrome, which is a catchall phrase for “You’re sick, but I have no idea why or what’s doing it.” He flatly refused to even consider Lyme Disease, even though one of BC’s top neurologists (name withheld by request) told me she was certain, based on all the information I provided her and the neurological tests she did, that I did, indeed, have Lyme Disease. She would not treat me for it, which is understandable, while also frustrating. It is very risky for a medical doctor, even a specialist, to treat someone for long term – or chronic – Lyme Disease.

After seeing the infectious disease specialist who was absolutely no help at all, I was referred to another infectious disease specialist who simply backed up the first one. Furthermore, she was VERY unprofessional, snickering and making jokes about me being a pastor.

It was only after I found out about Dr. Eric Chan of Pangaea Clinic of Naturopathic Medicine that I was finally able to get a prescription for the antibiotics that are essential for fighting Borrelia burdorferi (Bb). Bb is the main bacteria infecting people with Lyme Disease, discovered by a doctor studying the mysterious illness that suddenly infected a number of young people at Lyme, Connecticut. Anyone infected by Bb from a tick bite is almost certain to be infected with a number of other parasites, as well, as was (am) I.

It took years of various antibiotics before I was able to go off them. It is necessary to keep changing the antibiotics, and each one is only effective for so long. But each time I finished a course after improvement from that antibiotic stopped, I would begin to crash again within two weeks to two months, maximum.

It took years. But I was finally able to go off antibiotics (hopefully) for good about four years ago. But I am still a long way from my old self.

I still battle horrendous fatigue and pain. On 1800 mg per day of oral Gabapentin, I am able to stand the pain and keep my sanity, but it is still pretty nasty. 3600 mg per day is the recommended maximum dose for oral Gabapentin according to PubMed, but I discovered that if I go above 1800 mg per day, I start having very adverse cognitive difficulties. So, 1800 mg per day is the (un)happy medium.

But for me, at least most of the time, the awful fatigue and constant feeling of being unwell is the biggest challenge. I want to do things! But while I used to be able to go full speed from dawn till after dark year round, I now just can’t.

I often get smirky statements from others like, “Well, you’re not as young as you used to be!” But what they don’t realize is that I went from full speed to zero in a matter of a couple of weeks.

What I discovered in July of 2019 is that my symptoms and fatigue nearly completely disappeared when I spent some time in Northern BC, near the Yukon border. We planned to go back up there in 2020, but then COVID-19 hit and everything was locked down. We were even able to buy a small property in a tiny northern community at the end of 2020, but due to COVID-19 and some 100-year flooding that wiped out the road in, we still have not been able to go back. I am hoping that when we do I have the same relief.

I know that people who have Lyme Disease have an overloaded and overactive immune system, so I have a theory about why the relief happened. Where we go is above all the continental air pollution, as well as above the prevailing winds from Asia, where China, especially, burns vast amounts of coal to generate electricity.

Stay tuned to this blog and find out what we discover when we are finally able to go north again! Perhaps there is still an opportunity for a better quality of life.

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