Jim’s story as of May 4th 2003
When I was a young boy I had energy to burn and the lung power with which to burn it. I played road hockey almost daily in the winter. Baseball, football and soccer in the warmer months. Never was I short of breath.
All that changed approximately at the age of 11 (1965) while living in New Brunswick.
I recall a debilitating flu like illness in the summer months (then looking out my basement window wishing I could join in the activity outside) and the symptoms were that of a severe flu. I experienced extreme fatigue, vomiting, headaches, muscle aches and excruciating pain in my eyes each time I looked out into the brightness of daylight.
After a few weeks I was back to normal for the most part. The only lingering problem that I recall was the shortness of breath I experienced when playing my usual sports. It wasn’t severe but was annoying enough for me to complain to my parents.
This stayed the same until approximately the age 16. While staying at a friends home (we were in Calgary, Alberta now) I took it upon myself to tackle the cleanup of their back yard. There was tall grass and weeds so I went at it with a power mower. When I was done I noticed that I was covered in ticks. Thinking I got them all off I went about my business. Shortly after this I left for a camping trip to the Okanagan Valley in B.C..
After one night sleeping under the stars in a sleeping bag, I awoke with an awful headache, nausea, muscle aches etc. and I couldn’t take my head out of the sleeping bag because again the brightness of daylight hurt so bad.
Weeks went by and I was fairly well but now my breathing had worsened. I was oxygen starved every time I exerted myself even a little. I could no longer even ride my bike up the slightest hill without my legs tiring and aching. I had this tightness come over my head which I described to my mother as someone stretching a nylon stocking over my head. It left me in a foggy confused state which would come and go. My already short, short term memory worsened. I could no longer fall asleep well at night.
Now the doctor visits started.
I had pulmonary function tests which showed nothing, allergy tests which showed allergies to dust, molds etc. My mother was given a list of instructions on how to dust proof our house and I was put on allergy shots. I had nose drops, ear drops and other remedies to clear the sinuses. Nothing helped and I still had all these other problems going on as well so I went to a doctor that I had heard on the radio talking about allergies and mega vitamins.
After a visit with him I was put on a high dose of vitamin A and D and given a box of mineral supplements to take. My sleep improved for a short while but nothing else. After about six months of this I stopped.
Now don’t get me wrong here…I was not an invalid, did not look sickly and my problems were more of the bothersome nature than they were anything else. I could no longer play sports that required good lungs and had trouble sleeping as well as remembering things but otherwise was just a kid with some limitations.
In my early twenties my breathlessness and confusion worsened while living in the Kootenays of British Columbia and more series of tests were performed. I started having chest wall pain as though I had a chest cold in my ribcage. My diaghram area ached. During one of the pulmonary function tests, when blowing air out as hard as I could, I blew the needle off the graph paper. The technician adjusted his needle settings to half values. The report went to my doctor…I had ‘disease consistent with severe pulmonary restriction such as pulmonary fibrosis or emphysema’. The doctor enrolled me in classes with other similarly diagnosed patients to teach me how to deal with the impending ever-worsening breathing problems.
There I was with all these elderly sick people and I was, I felt, still quite well compared to them. It scared the heck out of me…they looked terrible, sounded terrible and this was to be me in the not too distant future only I would be about 50 years younger than most of them.
After two years of this I ended up in the hospital with a panic/breathing attack. The doctor at that time read my file, took one look at me and said ‘no’ this isn’t right. Off I went again to the pulmonary lab. This time I recall sitting on the edge of my hospital bed as the doctor came in with the results. NO LUNG DISEASE. The previous technician had reduced the needle value by half but forgot to adjust his results accordingly, making it appear as though I had massive lung restriction. As the tears of joy ran down my face I realized how much this had been bothering me over the previous two years.
I felt great… still had all my old lingering problems but these were nothing now. I learned to live with my aches, pains, sleeping problems, memory problems that would come and go and shortness of breath.
Was any of this so far to do with Lyme? …I don’t know. Does the Lyme load in your body have to build to a certain level before major complications set in? …who knows?
Fast forward to the early 1990’s. Things changed dramatically. Living now in Dartmouth, Nova Scotia I had done a lot of hunting but hadn’t been for over a year. I was doing a property brushy area clean up as we were selling our home, and I recall getting an itchy naval. It was so persistent that I thought of going to the doctor. There was a 5-6 inch rash around the naval but it was hard to see because of my body hair in that area. I left it alone and it went away after about 3-4 weeks.
Shortly after this, my wife, kids and myself loaded up our camper and moved across country back to B.C.. On the trip my legs started to tingle and go numb. I also had to make frequent stops to sleep, and I fell asleep fast which was odd for me. I needed much more sleep in the run of a day.
When we arrived at our destination, I went to see a doctor who thought it may be a circulation problem. Tests were ordered but all were negative. Gradually things worsened. My knees would give out on me and I had what I called rubber legs…very unstable. I had trouble focusing my thoughts more so than before and had to re-read every paragraph when reading a book or the newspaper. Sounds and bright lights bothered me.
That Christmas while at my sisters for xmas dinner I started to feel sick (before I ate). The nausea never amounted to vomiting but was there ‘daily’ for the next couple of years during which time I became very sick. The lymph nodes in my groin and armpits were swollen and achy each day. My liver would swell and ache. My mind had left me. Fatigue ruled my days. Spots and waves obscured my vision. Bowel and stomach problems were almost a daily issue.
More doctors, more tests, more negative results. I was cut, probed and needled. A biopsy performed on a lymph node from my groin showed a normally functioning node fighting infection. What was the infection? …no one knew.
I developed what I know now is the classic bull’s eye rash on my right hip which when I showed it to the gastroenterologist I was seeing he assured me it was nothing.
Some thoughts had been Fibromyalgia, Chronic Fatigue Syndrome, Lupus, MS and I was even tested for AIDS.
Eventually the doctors said they could do no more. Upon hearing this, my amazing wife went to the local library and did research. She came across a book about Lyme Disease, brought it home and said, “Here this is you”.
Armed with new found confidence and hope I went off to the doctors. I was very quickly shot down. Not Lyme Disease, too rare, not in Canada (1993 by now). I asked for the blood test for Lyme…negative result…end of story. Lyme would not even be considered after the negative blood work. I explained what I read in the book about false negatives and was told no, that in fact Lyme was over reported due to too many false positives.
Feeling dejected I wrote out a list of my symptoms to at least put in on paper. Some of which were as follows:
Sore tender spots on scalp as though I had been punched, brain fog, confusion, ringing in ears, poor memory, vision problems (spots, sparkles, waves, bloodshot), sore spots/tingling on tongue, raw sore inside of mouth at times, a redness on my face like I had been slapped on each cheek, facial numbness with drooling at times, cough, sore throat, phantom jaw and tooth ache, shortness of breath, overwhelming fatigue, carpel tunnel like pain in wrists, sore tendons and muscles at various other spots at various times, sore hip joints, lower back pain, creaky and cracky neck and knee joints, weak rubbery legs, twitches, tremors, bowel problems, stomach problems, hot/cold sensations at various locations at various times, low body temperature, very unable to withstand cold, swollen lymph nodes, heart flutters and palpitations, night sweats, uncontrolled sweating even in cool temps, and some symptoms that I’ve missed no doubt.
One day, after having driven a vehicle for 25 years, I got in my car and I couldn’t remember nor rationalize that I had to turn the key to start the car. This is a type of memory/thinking problem that I can’t even begin to explain properly.
Still very sick and getting worse I found the name of a Lyme society in the book and called the number asking them if they knew of any doctor in Western U.S. or Canada who knows Lyme Disease.
They gave me the name of a doctor here in B.C. just north of Vancouver. I quickly called and he agreed to see me. After a lengthy consult he diagnosed ‘clinical Lyme Disease’ and prescribed oral antibiotics (IV was impractical because I lived in a different health region and needed a local doctor to prescribe it…they wouldn’t).
After a week or so I was worse off than before but he told me to keep on taking the medicine as that was a good sign. Eager to hear anything positive I kept going and around week three everything changed. For the first time in years I had no nausea. I was able to stay up past 6 pm. I quickly became about 80-90% better. I was in heaven. I felt for the first time in a couple of years that I might live.
The saga continued…each time I stopped the antibiotics, all of my symptoms returned with a bang. Then after being put back on them I would get better.
This was fine for the next several years until my Lyme doctor retired.
Fearful I would not find another doctor willing to treat me I was feeling quite helpless when my last refill came up. Then I found a local doctor who listened and who would treat me. He did want me to see the local Infectious Disease doctor though. We ran another set of tests at the B.C. labs which again showed negative for Lyme. After a short 15 minute exam the Infectious Disease doctor declared he doubted what I have is Lyme Disease. No explanation of what it could be… just not Lyme.
By this time my daughter started having problems with her joints and heart and was tired all the time. Eventually fearing Lyme Disease I started doing more research. We were still getting encouragement from our local GP as he wasn’t ready to simply write us off. I found the name of an experienced Lyme doctor who was a couple of hours drive from where we live. I made appointments for my daughter and myself and ordered blood test kits from Igenex labs in California. We had our blood drawn and sent to Igenex. My daughters came back positive but mine was negative according to the strict CDC definition. When the results were seen by our new Lyme literate doctor he confirmed we were in fact both suffering from Lyme and that enough ‘bands’ on my test were positive just not reportable.
He ordered 3 months of IV ceftriaxone with oral Flagyl for the both of us.
Our local GP was happy to defer to the Lyme doctors expertise and in consult with him we started treatment. We both felt worse for a period followed by steady improvement. However, after 28 days, the same Infectious Disease doctor I had seen previously said we could not have more ceftriaxone unless we paid for it ourselves, as 28 days was enough. He had never seen my daughter but yet he was interfering with her treatment. He was in charge of the hospital pharmacy from where we had to get our meds from.
Luckily our own coverage was paying for this so we continued on. It wasn’t until the 6th or 7th week that my daughter started to show improvement… not sleeping all the time, her heart problems all but went away and she had a social life again. Her joint and back pain stopped and she said her brain started to work again. She has even been able hold a job AND take school courses. This was definitely not possible just weeks before.
We are just now finishing our course of ceftriaxone and will probably go on orals for a period.
I suspect my battles aren’t over as this bug is able to avoid total eradication in many cases. My daughter has youth in her favour and we’re hoping for the best.
Having good doctors with the guts to stand up to their peers helps more than anything.
Update Mar. 2004… My daughter’s heart problems worsened again and she ended up having a pacemaker implanted. She is also on a beta blocker every day. She is still taking antibiotics, orally and except for the pacemaker is doing quite well. She has stopped antibiotics a couple of times but relapses very quickly each time. She’ll continue with antibiotics for some time yet.
Update Feb. 2005 My daughter has been off all antibiotics for one month and is doing remarkably well with the Lyme symptoms. She still has headaches and some back pain but this stems from a car accident around the time she first started getting ill.
I too have been off and on meds for a few months and am doing quite well now.
My daughter has been off all antibiotics since Dec. 2004 and is doing fine except for the permanent pacemaker.
I have had a couple more episodes requiring treatment but am otherwise fine now…still have some lingering issues but these are very livable.
My daughter had a beautifully healthy baby boy in March last year. She is healthy and my grandson is doing just fine.