My early recollections of my disease which started in 1985 was an overpowering fatigue, can remember joking with friends that I had "sleeping sickness". Also had the worst stomach cramps of my life followed by constant diarrhea and itchy pimples like no-see-um bites when nobody else was getting them. The sun was making me sick, read "The Sun Is My Enemy" several times. This was a story by a lady who travelled Europe searching for answers to symptoms similar to mine. She eventually got a diagnosis of Lupus because of a butterfly rash. I do not remember this rash, I had little blisters that acted like little lens when exposed to the sun and resulted in an itchy red rash.

I have an insidious disease and am convinced that residents of the Central Interior of BC can help myself and others to eventually understand this disease. We have the best Doctor in BC and the best treatment in North America. The problem is that we do not know the reservoir of infection so do not have tests that are specific to this disease.

In my search for the cause of my weird and painful symptoms I met some very excellent doctors who tried to help me. One such doctor used his small bush plane to care for a mostly native population in central northern BC. At that time he told me that in this northern area he was suspecting a form of syphilis that was resistant to penicillin. At that time there was no knowledge of Lyme disease in this area. This would be interesting to follow up on as symptoms can be similar to Lyme but sadly this doctor is no longer with us. Another doctor who impressed me greatly is no longer with us, Dr. Paul E. Lavoie, one of the early great borreliosis doctors. I credit this doctor with saving my life because if the disease didn't take me, there is a chance that I would have. How many unexplained suicides are a result of untreated Lyme borreliosis? To chronicle the course of my disease I have decided to post a letter that I wrote to Dr. Lavoie in 1988. I wrote this letter in an act of desperation, as I could not find anyone with the knowledge of how to treat my disease here in BC.

COPY: Letter to Dr. Paul E. Laovie DATE: July 13, 1988

Dear Sir:

Although I have never met you, Dr. Norman Reiner, Doctor of Infectious Diseases and Doctor A.S. Kelly, family doctor both have discussed my case with you. I would like to thank you for your sympathetic help in treating this Borrelia infection that I seem to have. It is very scary going to a dozen different doctors over a period of three years and being told there is nothing wrong with you - get on with your life - see a psychiatrist, etc. The symptoms are very painful.

I would like to tell you my story as it may help us both.

In the fall of 1985 I was gold mining - 96 feet underground in an old shaft - dug in 1935. It was about this time that I had a strange bite on my arm which I put down as a spider bite as I was living in a log cabin built in 1935 with a floating floor and the bottom logs were rotten. Also, about this time I started living with a headache that I blamed on a powder headache as I was blasting bedrock in the tunnel. After three months I went to Dr. Kelly and told him that I had a headache that was in the back right hand side of my head, it was there when I got up in the morning and by afternoon 10-12 aspirins didn't help. He suspected a tumor and sent me to a neurologist who did a cat scan which showed nothing. About 2 weeks later the headache gradually went away.

During the summer of 1986 I don't have any notes on but I felt funny. I did go to Dr. Kelly for a rash that the sun seemed to irritate and turn into a small water blister that left scars. I still have very faint scars on my arms although they may be from the previous year.

In the fall of 1986 I tried to work the mine but found I didn't have the energy to climb the ladders anymore so I tried shoveling into a sluice box but it was a chore to shovel one yard through a day (a man can shovel about 1 yard per hour). At this time I also had slight diarrhea and terrible stomach cramps. I shut the mine down.

In the winter of 1986-87 I worked as a consultant for the Forest Service and had a terrible time. I had fatigue, lower right side abdominal pain, flushed feeling face.

Spring and summer of 1987 I was quite sick and visited Dr. Kelly almost weekly for tests and re-tests. It was at this time I was found to have high blood pressure and was treated. I haven't had high blood pressure before or after this incident. I had extreme fatigue. If I walked 100 feet up a slight slope, I would rest halfway. Joint pain, my wrist hurt too much to shake the thermometer down. I felt as if I had a temperature of over 38 but it rarely got over 37.5 in the afternoons. I had flushed feeling face and a funny dizziness for about a week I had heart flutters, minor chest pains, ringing ears and severe head banging. Once I felt as though the side of my head was going to burst between my ear and eye. I had uncomfortable underarms which lasted until I took the doxy. I couldn't do my pants up for three months because of abdominal pain on the right side which gave way to severe testicle pain. I had exposed nerve endings under my arm, which were diagnosed as shingles that didn't get bigger than a 50 cent piece and lasted about one month. The scars are plainly visible today. At times I had a headache but not in the rear right hand side, stiff neck, and sore eye movement. I had an intolerance to alcohol, one drink felt like my whole system was poisoned. I am an avid reader and spent three to four months where I couldn't read. I had a hard time to dial the telephone as I couldn't remember the numbers long enough to dial. I put fresh fish in the pantry, potato chips in the crisper and salami in the knife drawer. In August of 1987 the neurological symptoms started to ease off and I found I could read short stories so my wife brought me a pile of Scientific American magazines. In the July 1987 issue I was reading an article on Lyme disease when a paragraph on arthritis caught my eye. At this time I was still having bad joint problem, my right wrist was swelling and my ankles were swelling. I had a hard time getting tested, it was one week before Christmas when I finally got a prescription for IM Penicillin 1.2 megaunits (Bicillin) and 500 mg. Tetracycline for ten days. Within 12 hours I was quite sick with the above symptoms with the exception of a headache. After finishing the medication I felt good for a couple of days but quickly deteriorated back to my old lousy self.

On Doxycycline, the first three weeks were characterized by elevated joint pain and pimples on the neck that felt like shingles starting but went away after they had poked through. I have been taking doxy for almost three months now and am feeling better with the exception of low energy levels and joint pain, sometimes shooting pain but mostly like a burn without the heat. The pain is between my shoulder blades, right elbow, right wrist (swollen) knees and ankles which swell with use. The pain comes and goes for days to weeks. I also have slight pain in my lower right abdomen and right testicle.

On proof of reading the preceding pages, they sound like a chronic hypochondriac speaking, small wonder that the doctors didn't take me seriously.

In finding the article Lyme in August I felt very relieved and thought I would be better soon, but it took seven months until I took doxycycline and in the meantime I was told I had louse disease, then mouse disease, then borrelia hermsei, and finally Chronic Borreliosis.

I wonder why I am the only one in the area a with these symptoms - here is supposition. At the time I was mining in the Manson Creek area 120 miles north of Fort St James I had a German Short Hair Pointer that would never ride in the pickup, she ran in the bush when we went to town for the mail and it was 7-8 miles. When I was underground all day the dog would amuse herself by pestering muskrats, so you see that she had a lot of exposure to the bush. At night when I was reading she would become a lap dog as she liked attention. In the fall of 1986 when I shut the mine down the dog got such bad arthritis that she couldn't run anymore and lay in the cabin whining with pain. I put it down to old age as she was 11 or 12 years old. I can see the dog passing a tick to me but don't know if the spirochete can live in a dog.

On the brighter side, this time last year I knew I was going to die if I kept going downhill - that is past, I am puttering about the yard on good days and the bad days only 2-3 days instead of 2-3 months. Last week I drove the car to Vanderhoof and back - about 70 miles which is the first time in two years I have driven and been reasonably comfortable. Just the jiggling of the car used to irritate my joints and I had to squirm a lot.

Sir, I am only 41 years, have been married 21 years to the same women and have daughters of 15 and 17 years and I'm really looking forward to getting on with my life as I have learned a lot in the past three years.

If you know of anyone or anything that will speed up my healing process I would appreciate hearing from you as I am getting very frustrated and I know that I am supposed to have patience but three years is a long time to live with pain as strange as this.

It's interesting to note that the back pain started with a not too unpleasant tingling sensation that travelled from my waist to my neck, along the spine, akin to a boy with a stick on a picket fence, and then after weeks settled to a pain between my spine and shoulder blade. It was an eerie sensation when it travelled to my neck and back again. Now it stops mostly on the right hand side and once in awhile travels to the left hand side.

The first two weeks on doxycycline I had an unpleasant tingling burning sensation on the backs of my hands. I now have a red rash, like a burn that doesn't like the sun.

On Penicillin and Erythromycin I had very sweaty hands and feet, watering eyes, sore eye movement and aching joints.

Once again, thank you very much and please feel free to send me a bill for your services as you are the only doctor that I know who is knowledgeable about this borrelia infection.

Yours truly,

Ron Gerhardi

To be continued..........

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