Duncan Munro, Langley, British Columbia, August 2007.

This is a short account of my past and present encounter with Lyme Disease.

I think it appropriate to explain a bit about myself. I completed a BA at SFU, with majors in History and Sociology in 1989, and formally graduated in 1992. I delayed graduation for several years after beginning full time work in the university library in 1989. I have always had an interest in the natural and behavioural sciences and I am a avid amateur astronomer, at a fairly advanced level. In 1995, I designed the first observatory in Canada, to be dedicated to the robotic discovery of supernovae, and I wrote the specifications for the robotic control software (CARObot), and I helped to write and develop the robotic control software in partnership with a post graduate Astronomer from England. This observatory, the Canadian Amateur Research Observatory (CARO), was built by the RASC, Vancouver Centre, and was largely funded by a Canadian NRC grant. The CARO is located in the UBC Research Forest, close to the site of the UBC Liquid Mirror Telescope. I had to discontinue my work at CARO, in 2000, due to ill health.

The Ecology of Lyme Disease in Mission BC:

I moved (returned actually, since I was born in Mission) to Mission in 1978, when I purchased a small, older home. Over the next 22 years, I lived in 3 homes in the same area, all of which backed onto the same large wooded ravine. My last two homes in Mission were once part of the same property. The lower portions of the ravine is also quite wet when the Fraser River rises in the spring. This attracts migratory birds heading north, which may form an important transportation vector for infected ticks. The forest cover of the ravine serves to moderate any extremes of temperature, and the
thick mat of leaves and needles on the ravine floor forms an ideal over-winter location for ticks, which are not a burrowing species of arachnid, and cannot survive long, cold winters. In short, this pleasant looking eco-system, which stays agreeably cool even during the hottest summers, is the ideal environment for rodents, which form a large reservoir for pathogens, and for ticks, such as Ixodes Pacificus, which is Lyme disease's favourite transmission vector, on the west coast. It was probably one of these infected mice that entered my older home in May of 1990, and left behind an Ixodes Pacificus tick, which then crawled into my bedding and burrowed into the skin behind my left knee.

A horror story:

I discovered, in March 2005 that I have been suffering from Lyme disease since May 10 1990. I had an engorged adult tick removed from my left leg, by my doctor, on May 11, 1990. I was told by my doctor that it wasn't possible to get Lyme disease in BC, and to ignore any reactions to the bite (or words to that effect...). The tick was sent away for tests but seems to have been "lost". I subsequently developed a classic "bull's-eye" rash (erythema migrans or EM rash) on my left leg around the site of the bite. The EM rash is one of the first symptoms of a Lyme disease infection, and is the most accurate diagnostic presentation of the disease, but it occurs in it's classic circular shape in only about 1/3 of all infections, while another 1/3 will an irregular shaped rash smaller, or much larger than the classical, 'bull's eye' shape, the remaining 1/3 of all cases will have no rash at all. Taking my doctors advice, I ignored it, as it was not painful, nor did I feel ill.

On May 25, I was off work for 4 days due to a back injury after falling off a chair, and I recall thinking how odd it was to be so sore after falling such a small distance. In early August, I developed a very severe flu-like illness with a lot of joint and muscle pain, and went back to see my doctor. I suspected Lyme disease, as I had read and vaguely recalled (not the parts about the EM rash, unfortunately), several articles in the newspaper on this newly discovered, tick-borne illness and insisted on being tested, as my symptoms seemed to coincide with the tick bite and the strange rash. My doctor ordered 2 tests, 3 weeks apart. He reported to me that the tests were negative.

I recovered from the "flu" after several weeks, and soon forgot about the whole thing. In December, my wife Kate and I were injured in a car accident after being rear-ended. Kate recovered after a few months, but I ended up missing a year and a half of work. I was not able to return to work full time until June of 1992. I could not understand why I was not recovering from the accident, nor could my doctor.

After I returned to work, my back was still sore and I gradually began to fatigue much more easily. In 1995, I suffered from a serious illness which my doctor was not able to diagnose. I developed a high fever and pneumonia. My doctor was reluctant to prescribe antibiotics but I could feel that I might not recover. After a week of a very high fever and a continual delirium, another doctor prescribed antibiotics and I recovered very quickly. Looking back, I suspect that this was a complication of the disease, or the manifestation of another tick-borne disease. When I travelled to Australia in 1996, I was extremely fatigued during the entire trip. I put
it down to jet lag but I am certain I now know the real cause. Around this time, my family doctor asked me how I was feeling. I told him, "my body hurts, my bones hurt", and I could tell that he didn't know what to make of me.

May 2006:

While reviewing a recent MRI image of my brain, I suddenly
remembered an incident that happened one morning in the mid-1990's. I woke up in the morning after Kate had left for work, and the bedroom seemed strangely dark. I turned on a light and noticed that I had no peripheral vision on one side. By covering one eye and then the other, I realized that I was blind in one eye. Over the next few hours, the vision slowly returned in the affected eye (I can't remember which eye). I suffered no other discomfort, although I may have had a sensation that my eye was "asleep" such as when your circulation is blocked in an arm or leg, and I assumed that I had slept in an odd position which blocked the blood flow to the eye.
I feel rather foolish now, that I would make such a strange assumption. I did report it to my doctor several days later and I recall that he did a standard set of tests to check for a stroke. This incident was probably caused by an overnight inflammation of the optic nerve or the surrounding tissue, which blocked the optical nerve impulses to my brain.

During the mid-1990's I removed several ticks from our cats and from
myself. A biology professor at SFU, who worked as an Academic Adviser, had an interest in ticks and I delivered one of the ticks to him. He identified it as Nymphal stage Ixodes Pacificus tick, which is a known carrier of Lyme disease. The ticks that I removed from myself were so small that I had to use a 30x microscope to identify them. I thought at first sight that they were small scabs on my skin, but their shape was peculiar so I examined them with a pocket microscope.

Around this time our cat, Seamus, fell ill suddenly and appeared limp and paralysed. We had to have him put on an IV at the vet to keep him from dying. After a few days, we took him home and fed him infant formula with a syringe down his throat. After a few weeks or so he recovered and seemed to be his old self again, although he never recovered his former muscle tone. I recount this incident as I discovered just a few weeks ago that a sudden paralysis is a classic symptom of Lyme disease in cats.

In the late 1990's on a Friday afternoon while at work, I fell ill with a fever, chills and uncontrollable shivering. This was not long after I had suffered my bought of pneumonia. The doctors at the SFU clinic were going to hospitalize me but I gradually recovered after several hours. However, I was still so sick that my brother had to come and pick me up at SFU. After a few days I began to feel better, but again in retrospect, this looks like it was caused by some form of tick-borne agent.

Along with a gradual decline in my health, my mental state began to slowly change. I began to suffer from long bouts of a kind of depression and I would get frequent, severe, but short-lived headaches. I felt unable to control my emotions both at work and in my private life. I began to feel chronically fatigued and continually short-tempered. I was continually suffering from brief, flu-like illnesses, characterized by muscle and joint pain that left me feeling exhausted. I no longer had the energy to maintain my relationships, even with Kate. I'm sure now that my outburst of anger with Kate was a symptom of Lyme disease, and I was probably suffering from a mild encephalitis at the time. I had severe headache afterwards.

In 2000, after having attended the Winnipeg RASC GA, I fell ill, with a high fever that developed into chronic bronchitis. I only recovered after two months of antibiotic (oral tetracycline) treatment. A few months prior I had to be put on ventilin at Mission hospital, after suffering from a severe asthma attack. In 2000, I requested a third Lyme disease test at the SFU clinic. The test came back negative. After 2000, my physical health recovered, to a large extent for about 3 years. I suspect that the long course of antibiotics used to treat the bronchitis put the Lyme disease into remission.

For the last few years I have been trying to put together the pieces of this strange puzzle. I investigated several possibilities, including Lyme disease, but I began to fear that I was suffering from clinical depression. In the last two years I made a determined effort to improve my health but I was thwarted by the rapid onset of arthritis on the left side of my back and in my left leg. The arthritis was developing at such a rapid rate that I feared I would soon be unable to even walk. In February of this year happened to read an article in a magazine in the staff lounge. The article discussed the symptoms of Lyme disease. It mentioned that arthritis was a symptom of late-stage, untreated Lyme disease, along with a number of other symptoms, most of which I seem to also have. I began to research Lyme disease using the Internet. SFU's library has virtually no information about Lyme disease. This Canadian site has lots of useful info: www.canlyme.com.

I went to my doctor and told him that I was certain that I had Lyme
disease. He was very sceptical but agreed to to begin treating me with antibiotics and I was tested again for Lyme disease. I then made an appointment with a doctor at the Mission clinic where I had the tick removed in 1990. I asked to see the doctor's notes from 1990 and the results of the 1990 Lyme disease tests. To my horror and amazement, both tests had been positive, weakly positive, but still positive! The first IFA test reported a titre of 128:1 and while the 2nd was reactive at less than 128:1. I was able to recall the events of 1990 after seeing the doctor's notes. It was clear from my clinical symptoms and the test results that I was infected with Lyme disease. While doing research on Lyme Disease, in 2007, I discovered two documents from 1989, and 1990, which were written after two Canada wide, Provincial CDC and PHAC, conferences on Lyme Disease. One document indicated that a titre of 128:1 after a tick bite and the onset of Lyme Disease symptoms, would be considered positive for Lyme Disease in the province of Ontario, while the other indicated that an unstable titre (IE, either rising or falling, on 2 consecutive IFA tests) was indicative of recent infection.

In 1990 this was a virtually unknown disease and my doctor missed the diagnosis. What is really shocking, is that a 2007 complaint to the BC College of Physicians and Surgeons, resulted in the discovery that my family Doctor had in fact consulted with a specialist associated to the BC CDC, and it was the BC CDC specialist, who decided that the results were negative! This same specialist probably attended the two conferences which both recommended interpretation of my blood tests and clinical symptoms as diagnostic of Lyme Disease infection, so his actions are inexplicable and inexcusable.

Had I had a month of antibiotics in 1990, I might have been able to defeat the disease and perhaps, dramatically alter the course of my life. When I showed the results of the tests to my present doctor, he immediately referred me to an Infectious Disease specialist at VGH. My most recent test also came back negative. However, I have since discovered that the Lyme disease test used in BC, typically has about a 60% (yes!) false negative rate based upon statistical
analysis of this type of test in the USA.

The most accurate indicator of early Lyme disease infection is a
physician-confirmed, erythema migrans rash. USA studies of ELISA and
Western Blot, two-tiered testing such as used by the BC CDC to test for Lyme disease, show that this two-tiered testing will give a false negative result in about 50-60% of patients with physician-confirmed erythema migrans (see more on this below). Contrary to the information disseminated by many CDCs, false positives are extremely rare.

I have been taking antibiotics since March 2, and my arthritic pain has largely disappeared. My joints are still weak in my left leg but at least I can walk again without continual pain. However, I have been suffering from an intensification of my headaches since beginning treatment, along with bouts of muscle and tendon pain. This is actually a hopeful sign as I suspect that this is a Herxheimer effect, caused by the die-off of the the Lyme disease spirochetes. Any ways, I am hopeful that I can defeat Lyme disease but it might be a long fight.

My arthritic pain began to return soon after I stopped taking the oral antibiotics. In February and March of 2006, I received two months of IV Ceftriaxone. After the treatment I felt much better, but a Herxheimer attack in the 8th week of treatment indicated that the spirochetes were not all dead at that point. My joint pain began to return not long after stopping treatment. I am hoping to have another round of antibiotics later this summer, after my intestinal track has had a chance to recover a bit.

I was fortunate in that I have, incontestable, proof that I was infected in May 1990, even though I was unaware of this evidence until February 2005. I asked my current ID specialist if he would have diagnosed me with Lyme disease without access to a blood test done in 1990, (misreported to me at that time). His answer was "no". So, today without the treatment that I have received since March 2005, I would probably be in a wheelchair, with my mind and body being slowly destroyed, and no proper diagnoses would have been forthcoming. This is the great tragedy of Lyme disease, in Canada.

I know from my personal experiences with ticks in Mission, that there must be thousands of undiagnosed cases in the lower mainland alone. Some of you probably have this disease, and don't know it, but you probably know that you don't feel well, or you have been misdiagnosed with another illness. You may have friends and/or family in the same situation.

March 2005, treatment begun by Dr B., with oral Doxycycline. My joint pain, which was advancing up the left side of my body, and the pain in my left kidney and bladder, began to retreat almost immediately, but I began to suffer from severe, hours long, headaches.

April 2005, interview with Dr X. I was dissatisfied with Dr X's attitude and lack of interest in the possibility of Lyme Disease. I subsequently discovered that Dr X was consulted by Dr N, in Aug/Sept 1990 after my IFA tests came back reactive for Lyme Disease. Dr X, was therefore familiar with my case before I even met him, and he was instrumental in my being denied treatment in the Summer of 1990, but he did not make this fact known to me.

April 2005, Dr M diagnosed me with Lyme Disease and began treatment with Ketek and Flagyl, then Mepron and Zithromax (after which I felt “cured” for about 3 weeks, then a gradual decline), then another round of ketek and Flagyl then another round of Mepron and Zithromax. This treatment relieved my headaches but I began to suffer from auditory and visual disturbances, upon wakening, late at night. In Mid April 2005, I went on sick leave from SFU, and have been on sick leave ever since. In October 2005, I submitted a blood sample to Igenex Labs in California. My IGM and IGG WB, and Babebsiosis tests were all negative, but my WB tests did have bands which were statistically improbable in a person with no exposure to Lyme Disease. In Dec/Jan of 2005/2006, I began to suffer from night sweats, after Dr M had discontinued treatment.

In early 2006, I was referred to by Dr M to Dr D, a IDS. He treated me with two months of IV Rocephin (Cephtriaxone) , during which I felt much better, but after a month or so I began to relapse with a return of fatigue and brain fog, but the night sweats have never returned.

In the late summer of 2006, Dr M gave me another round of treatment with Ketek and Flagyl, but I did not respond to the same degree as before. In Oct 2006, I began treatment with Plaquinil and Minocycline, and I discovered that 400mg of Minocycline plus the Plaquinil dramatically reversed my brain fog, and greatly relieved my joint pain, in my left knee and hip. I continued on Plaquinil and 200mg of Minocycline for another 3 months, and currently I am on 200mg of Minocycline, daily, which seems to be causing a slow but gradual reduction in symptoms. In the Spring of 2007, I had a C6 Peptide test done through LabCorp in Bellingham Washington. It returned a low titre (.4) and there is some evidence that this test is quite reliable, as least as far as Lyme Disease testing goes, so I'm beginning to think the infection may have been destroyed, but I now have a post Lyme “syndrome” where my remaining symptoms are caused by tissue damage and, perhaps, some degree of autoimmune disorder, where the brain and joint tissues continue to suffer periodic bouts of inflammation. I also seem to get flare ups where my upper left side chest “emulates” angina very effectively, while my neuropathy in the form of shooting pains in my hands and feet continues, with short, sharp, daily attacks. Overall, however, I now get the sense that I am recovering, which I did not have for the 1^st year of my treatment, when it was one step forward and then one step back. However, my low titre on the C6 test, probably indicates exposure to Lyme Disease, and unfortunately as you will see below, even the C6 is not that good.

I have to chuckle ( rather then weep...) about the current, two tiered, Lyme Disease antibody testing. A screening test, typically, the ELISA test is done first, and if positive, then a second test, typically the Western Blot test is done:

“In this study the raising and development of the immune responseto Borrelia burgdorferi infection in 45 Italian patients sufferingfrom culture-confirmed Lyme borreliosis erythema migrans wasinvestigated. A total of 95 serially collected serum sampleswere tested by using three different commercial ELISAs: recomWellBorrelia (Mikrogen), Enzygnost Borreliosis (DADE Behring) andQuick ELISA C6 Borrelia (Immunetics). The sensitivities of theELISAs were as follows: Enzygnost Borreliosis IgM, 70.5 %; QuickELISA C6 Borrelia, 62.1 %; recomWell Borrelia IgM, 55.7 %; recomWellBorrelia IgG, 57.9 %; and Enzygnost Borreliosis IgG, 36.8 % “ ( From: http://jmm.sgmjournals.org/cgi/content/abstract/54/4/361 )

You will note, that in this test, the best result would mean that 30% of all patients, would generate a false negative result, even though they ( the 30%) might be on death's doorstep, suffering from Lyme Disease...while current Western Blot ( WB) tests are not much better. If the ELISA is negative then a WB will not be ordered, while even if the remaining samples upon which a WB is performed are 90% accurate it would mean that 37% (.7 x .9 = .63) of all blood samples would return a false negative. The WB test is probably not 90% accurate and if the accuracy falls much below 80%, then you might as well flip a coin rather than do the actual test, as the the overall probability of a false negative will rise to values approaching 50%. I have written the BC CDC and asked them to consider all Equivocal ( tests where the value falls below positive, but above a negative cut-off limit ) ELISA tests as Positive until proven otherwise, but they have not responded.

Update:

In the summer of 1991 I developed a peculiar skin rash that afflicted my knuckles, fingers, palms and elbows with a peculiar purplish rash. My family doctor and a dermatologist were unable to determine what it was, and all treatments for it were quite ineffective, although I noticed that it would abate when given antibiotics, and it nearly vanished when I was given two months of oral antibiotics in 2000. It has nearly faded completely since I have been receiving long term antibiotic therapy. I have been on Minocycline and Plaquinil since November 2006 and this seems to be gradually improving me, but it is hard to tell as I am becoming quite de-conditioned and have gained a bit of weight. Recently after a blood test came back with a high score for CK blood enzymes, I cross referenced Lyme Disease with CK enzymes and up popped Dermatomyositis, which is an autoimmune disorder characterized by a peculiar skin rash, and gradual peripheral muscle weakness. Published photos (see below) of the skin rash were identical to my own:

This is an interesting development, and I'll be investigating this further and I will be discussing it with a Rheumatologist in August of this year.

April 04 2007

Copy of an E-mail sent out on the SFU CUPE 3338 mail server: