The summer of 1997, my balance was off more and I was still getting weaker. I started to drink more and smoke more. The only time I found some relief was when I was partially drunk. Hangovers were getting worse and always seemed to come on the day after. At around 5:00 pm. on October '97, I crashed at high speed and took another severe body slam with the ground. By December of '97, writing was becoming difficult and the ringing in my ears was getting louder, along with my balance going downhill.
In May of 1998, I had a complete physical with a new doctor. I showed him the twitching in my arms and that my right hand index finger movement was slowing down. He checked my vitals and told me to get more exercise, and didn't seem to think much about the muscle twitches or the slowing down of the finger. May long weekend, I went from riding, to not being able to put my fingers into a glove, in one day. The weather turned cold and wet, which seized up my right fingers to the point of uselessness.
My index finger started curling in when I rode my bike and brain to fingers reflexes became so slow that I could no longer ride my motorcycle properly. One other strange thing was if I pointed my index finger out and tried to move my arm, I couldn't, but if I made a fist my arm would move normally. I also started to walk spastically. My legs felt like springboards but I couldn't move quickly or run. Coffee started seizing me up and making my fingers twitch. A small amount of alcohol had the same affect to the point where one night I had two beers with the guys and could barely move or open a door with keys.
I mentioned to my wife that I thought I'd found out what was wrong with me - allergic to alcohol! Something was definitely wrong so back to my X-family doctor, who said again, maybe CFS, and then referred me to an internal doctor; nice fellow that thumped on me with a rubber hammer for awhile and I just about kicked him over. My reflexes were very brisk and my legs would shake when he cranked up on my foot. He said he thought he knew what was wrong but would have to look in his books; then he referred me to a neurologist.
I went to see the neurologist on June 11, 1998. This guy was a total jerk. The examine was about 10 minutes long, where he too, thumped on me and flashed a red light on my skin in the dark.
He then told me I had ALS! We sat down, and he did a family tree. I asked what ALS was (I'd only heard the name before and knew that a baseball player died from it). He told me two years to live - no cure, no drugs would help,no hope, see ya!!!!! The whole meeting with this guy was about 30 minutes long. I was shocked! What was ALS? Needing more information I bought a computer, and internet time, then proceeded to search for information. What I found was not very encouraging. My sister Cheryl was also searching for me (thank god for her), and found someone that had ALS and was experimenting with supplements, with what looked like some success. I quit drinking and smoking totally and started taking supplements. Within a couple of weeks I felt a lot better; energy came back, I could stand and keep going all day long, but my hands did not work any better.
I started exercising regularly, because I felt good knowing I was getting stronger. Weights were getting easier and I started lifting them over my head with my right, arm which I hadn't done in a long time. This didn't make sense with ALS, so I sought out a second opinion. I got myself into an ALS clinic in a large city, where they are doing experimentation with new drugs. Thinking these doctors should know for sure, I was examined in the middle of July. The neurologist said I showed signs of both upper and lower motor neuron disease, but needed an MRI and an EMG, because of a questionable neck injury. The MRI showed that my brain and cervical cord appeared normal; slight posterior disc bulges at c4-5 and c5-6. EMG showed some nerve degeneration in the arms, mouth, tongue, throat - all normal.
I was also under high stress at this time, because my son had had a severe racing accident. In the middle of July I still felt fairly good and was continuing to exercise when I started to get what I will call lightning strikes.
These feel like someone is sticking you with an open end electric current. Had one so intense I thought one of my toes blew off!
I was also developing another very strange symptom. When I got excited my body would seize up, my legs wouldn't work and I could barely move. As soon as I calmed down, a period of a minute or so, away I would go again.
Sometimes my legs would shake too. For years I would get very wet - nightsweats on the odd occasion, but they seemed to be getting worse and more frequent now. I had all the regular blood work done; aluminum test, mercurytest, IgG and all the subclasses, but nothing showed much from normal. I had a Lyme disease test done because I read somewhere on the net that I should. It turned out to be an Elisa test; Borrelia burgdorferi-negative. The only thing I tested positive here for was Epstein Barr VCAIgG. The doctors didn't seem to think this was a problem.
In August, I saw the neurologist at the ALS clinic again for review. He went over my MRI and EMG and then said I had probable limb onset ALS. I asked him about some of the weird symptoms I was having and he said he didn't know what it meant. He gave me three bottles of riluzole and sent me home. I took the riluzole for four days and then stopped; thought it made me weaker. A heat wave hit in my area with temperatures running from 80 to 95 degrees. This really changed things for me. If I stayed out in the heat for any length of time I would get next to very violent. I would get so tired by mid - afternoon that I had to go sleep; I felt tired and run down all the time.
I quit exercising because I had lost all my energy and drive. I started getting forgetful. I would forget where I put things, or walk into a room and wonder what I was doing there. My thoughts would collect in a few minutes. I also was getting worse brain fog; hard to concentrate, and it was like I was spaced out(half drunk). I had this problem for a few years but never thought much about it. For me, it was like driving down the road, with everything in slow motion and hard to concentrate.
Since the ALS doctor couldn't answer my questions, and after many hours research and communicating with different ALS patients and support groups, I needed more answers. Back to the internet - CFS close on symptoms, but it didn't answer for my neurological problems. Then I read an article in the ALS Digest (#518 Borrelia infection masquerading as ALS).This got me thinking; I had two Elisa tests done previously (both negative)but I knew nothing of the symptoms of Lyme disease.
I contacted the person that wrote this article, and she put me in touch with a person who had had Lyme disease since 1986 - a two hours drive from me. He was a real nice fellow whom I had a long chat with. He then sent me a stack of information and a Lyme symptom check list. THERE I WAS. I COULD GO DOWN THE LIST AND CHECK OFF JUST ABOUT EVERYTHING; ESPECIALLY IN THE NEUROLOGICAL LIST. Finally some answers for my symptoms!
Here I was living on the prairie. I have three horses that I constantly pick ticks off of with my bare fingers, and squash. I have a history of being bitten in my youth, and my mom took them off with a hot needle most of the time. I remember a more recent possible bite on my chest just below the hairline. I am an avid hunter and have been in known Lyme disease areas. It started to make sense to me so I searched for all the Lyme disease information I could find. The more I found the more convinced I became. ALS pals thought I had very strange symptoms but people with Lyme ( some that have had positive tests ) were so similar to me, it was scary; right down to the EMG tests and the way my hands and arms are.
Loaded with this new information it was off to my X-family doctor for help. To make a long story short, he said too experimental, too expensive, might lose my license, negative test results, hope the other guy helps; that's why he is my X-family doctor. Devastated, I took my documents in search of a doctor that would help me. I got lucky and found a great GP doctor in a small town close to me, that listened and wanted to help. He didn't know much about Lyme disease and he had just lost someone he knew to ALS Bulbar, so we started treating the symptoms instead of waiting for a positive Lyme test to come back. Here in Canada out test procedures are barbaric, and for the most part, doctors are very reluctant to say there is Lyme disease here.
I can send to the United States for tests but would have to pay for everything myself. The neurologists handed out a diagnosis of ALS way too easy, without checking all the other possibilities. On September 1, 1998, I started treatment with 2 grams of IV Ceftriaxone ( Rocephin ) per day, scheduled to finish in January 1999. I have constantly done supplements and messed around with differen tones and doses. I have had regular blood work done monitoring my liver function and so far all normal. Improvements so far are: stiff neck is gone ( took two months ), right index finger doesn't lock up my arm anymore, had a second EMG done three months later and it showed nothing getting worse,short term memory loss seems better, and my brain fog has finally lifted enough so
that I could sit down and write this; and I am still moving.
What's not better: I have gotten noticeably weaker shortly after starting IV therapy, experienced fairly regular HERXHEIMER REACTIONS,( but the intensity seems to be getting less as the months go by) feel sick, weak, tired and out of balance, but I do get the odd hours or days of feeling a lot better, where I actually think I'm on the road to recovery; however, overall body stiffness and joint pain still moves around. My right knee hurts like its been injured again.
Here it is December 31, 1998, and I can't wait for 1999 to begin. 1998 was a very rough year for my family and '99 can only get better. Here's wishing you all a HAPPY NEW YEAR and better health for everyone in 1999. Keep the faith.
Brian Pierson
Lethbridge Alberta,
Canada
*UPDATE
We are sad to report that Brian Pierson lost his
battle with Lyme Disease and ALS in May of 2000.
Our sympathies go out to his family. May he rest
in peace.
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