I hiked, fished, camped, hunted, and spent a great deal of time outdoors, especially in the wilderness.
I grew up in a wilderness area, and have always spent a lot of time “in the bush.” As
a husband and dad, I took my family with me into this great space, and spent many long hours enjoying it with my family.
Most of my career as a self employed mechanic was on the water, as a marine technician, looking after all manner of boats from dinghies to yachts. But an opportunity arose some years ago to get away from the hectic pace of public service into the less stressful life of heavy duty service for the logging industry.
What a great life that was! Along with doing what I most enjoyed as a career, namely, solving puzzles and keeping things running the way they should, I was working outdoors most of the time in a wilderness setting, with forested mountains to my back, and the ocean and islands in front of me. What could be better than that?
Late in 2007, I was called to preach, an experience so vivid and plain that there was no question of my doing it. I planned to step in a pastor of our church as our pastor moved on, and planned to continue in my “day job” as a self employed heavy duty mechanic. However, that was soon to end.
At the end of 2007, I began to have strange flu-like symptoms. I got progressively sicker, but continued to push myself to keep working. What a battle! Every time I got up, I felt SO sick, sick to my stomach, sweating, achy, and it was getting harder to sleep, but I would push myself to get up and get going, telling myself I would get over it, soon. The fatigue almost overwhelmed me!
Soon, it became too painful to wear a hat. Whenever I put a hat on, it felt like I had a terrible sunburn on my forehead and someone was pressing a wire brush into it. I began to get tireder all the time, and it was hard to be civil with the people around me. People at work began to notice that I was very irritable, and it became increasingly difficult to get along with folks.
Finally, on our way back from visiting our first grandson in Oklahoma City in June of 2008, I told my wife I thought maybe I should stop working where I was. After all, I was a pastor, and the job kept me away at least twelve hours per day, six days per week. I thought I was overdoing it.
Shortly after I got back, I was asked by a former business partner to accept a position at his company as their service manager. The job was eight hours per day, five days per week. That seemed like an answer from heaven, so I took it. I started at the beginning of July, 2008.
However, the symptoms I was experiencing did not diminish. I began to see a doctor, but he simply put it off to stress, or some vague, unnamed virus that just happened to be going around and that lasted for six weeks to a couple of months. Basically, he was trying to get rid of me!
As time went on, the symptoms worsened. The sweats became soaking sweats every night, and after shower and breakfast, they would soak me again.
Every morning, I felt sick to the stomach. Eating would make me feel a bit better, but I would feel quite horrible until about ten o’clock in the morning, every day. Then things would calm down to a “dull roar,” but I felt sick all day, every day, was having a harder and harder time to think, and could not handle even light stress. At the slightest difficulty of any kind, I would sweat right through my clothes, with a soaking, prickling sweat. It was not a pleasant time!
Finally, about mid October 2008, I worked my last full day. I felt particularly awful that morning, but in the afternoon, I had a shocking experience that scared me into the admission that something was terribly wrong, and ended my career. I couldn’t comprehend simple instructions in a manual I was reading! Try as I might, I could not follow it, even though it was familiar.
That day marked the end of my career and the beginning of a long, seemingly futile quest for a diagnosis and, hopefully, a cure. I went through several doctors, looking for one who would actually LISTEN to all my symptoms, and then I was bounced from one specialist to another, many lab tests, a CAT scab, an MRI, and other tests. No one could come up with an answer.
The pain continued to increase, the brain fog increased, and all the psychiatric problems such as panic attacks, inability to deal with stress and the constant battle to stay out of depression were there constantly.
At this point, I was practically bedridden. It was only by the grace of God that I was able to continue as a pastor, although with more difficulty than anyone ever realized. Most people who saw me thought I looked super healthy! That is one of the great ironies of this disease!
When, at the urging of my mother who is well known for her digging, I asked about Lyme disease, I was told by every doctor that it was not possible, because it didn’t exist in our area.
By this time, I was on a pain medication that took the edge off enough for me to just function, and was able to sleep, which made a great difference in my cognitive abilities. I was able to do some digging of my own, via the internet.
What I discovered was that Lyme disease is endemic to our area. Since 2006, the BC Centre for Disease Control has published warnings in our local paper about Lyme disease. So, I went back to the doctors with this information. They ordered the Elisa test, which I have since found is practically useless, and of course, it came back negative. They declared that I did not have Lyme disease.
It was at this time that I was introduced via email to Dr. Ernie Murakami. I thank God for that fact! Dr. M listened to all my symptoms and told me that I had more than enough symptoms to be treated for Lyme disease, since the only two diseases that have such a long list of symptoms are Syphilis (which is simple to rule out!!) and Lyme disease. (both are spirochetes)
I presented all the information I had to a neurologist that I had an appointment with, and while she would not say I had Lyme disease, due to her requirements for a diagnosis, she said that based on my research, which she said was very good, I should try to get my MD to treat me for Lyme disease.
My MD did begin treatment, and after a month on antibiotics, I began to notice a marked improvement in my energy levels. My wife noticed that I was doing more things and rising earlier. I was starting to get up before my family, again, and I was starting to cook breakfast for everyone, again!
After six months of treatment, my energy levels were up to about fifty percent, although the pain had not decreased nearly as much. However, if I have to choose, I will take energy over comfort, every time! At least with energy it is possible to accomplish something!
I saw another specialist at this time. He would not listen to all my symptoms, and declared that I had Chronic Fatigue Syndrome, and that I had to slow down. When I explained that if I slowed down I would be stopped, he told me he understood what I was saying, but that I had to slow down. That doctor DID NOT understand what I was saying; in fact, he wasn’t even LISTENING to what I was saying.
Unfortunately, that specialist contacted my MD and warned him that if he continued the antibiotic treatment, he could lose his license. Basically, he was threatening to report him to the COPAS (College of Physicians and Surgeons). My doctor stopped treatment at six months.
After that, I could no longer get further help other than pain medication from any doctor. I was told that I definitely had CFS, that there was no treatment for it, and they didn’t know what caused it. When I told my doctor that they were all giving up on my, he admitted that that was true.
This began a long and very frustrating quest to find a doctor who would treat me. After about two months off the antibiotics, my health began to deteriorate, again. I got SO sick. The only reason I did not end up practically confined to bed like I was earlier was the pain medication, which allowed me to sleep.
Finally, in spring of 2011, I found out about Dr. Chan. It is a day trip to see him, as I have to take a ferry to Horseshoe Bay, BC, then travel out to Richmond, but it is certainly worth it! Dr. Chan is a RARE Lyme Literate Naturopathic Doctor (ND) who is licensed to prescribe antibiotics, who is in close contact with Dr. M, and who stays up to date on all the latest information on Lyme disease. He also keeps good records and writes on what he learns.
Dr. Chan started me on antibiotic therapy immediately, due to my previous history of success on antibiotics. He also drew blood for the Western Blot, which, indeed, came back positive to one chance in 40,000 of being a false positive.
I am now regularly seeing Dr. Chan (monthly) and am getting good, personalized treatment, including antibiotics, natural medicines, supplements to support my immune system and detoxify, and tips on what to do to aid in recovery at home, including regular time in the sauna.
I am improving. It is a slow process, and sometimes hits setbacks, but progress continues to be positive. Will I ever be as healthy as I was before this all started? That, I cannot answer. Time will tell. But I have hope, and every little step is a big step in the right direction for me.
In the words of Winston Churchill, “Never give up.”
UPDATE – 2017
Please visit Lyme Files Update – What has been going on? to keep up-to-date with my journey.