Lucky in Lyme
by Lisa Robertson
Posted June 18th, 2014
It has taken me a long time to finally find the courage to speak out regarding my Lyme journey. My husband’s new role as superintendent of Edmonton Public Schools is very public, and I really didn’t want to bring more attention to our family! However, two things have changed for me. First of all, I had a frantic conversation with a young mother in Whitecourt whose 18-month-old baby has Lyme disease (and co-infections) and she could find no doctor to assist her. Second, I am feeling GREAT right now, and I realize that my story is important so that our medical community starts looking at Lyme as a possibility so that people get treated early. In this way, patients can fight Lyme for months, rather than years, and the medical costs will be in the thousands, rather than the tens, or hundreds, of thousands.
September of 2013 was a very exciting time in the Robertson house! My husband, Darrel, had just started his new job as superintendent of EPSB and I was excited (and nervous!) about all that would bring! The boys were already knee-deep in school and volleyball season was in full swing. I was back working in a job I love as a teacher with Outreach Programs. Plus, the weather was absolutely gorgeous and I was taking every advantage! Each day, I would scoot home from work, grab the dog and head into the ravine – either to the Terwillegar Off-Leash Park, or into the Whitemud Creek Ravine behind our house. I was using this time to clear my head, organize the family, and exercise our lab, Georgia; therefore, I wasn’t wearing my closed toe running shoes and running pants. Usually, I was bushwhacking in my flip-flops and Capri pants! Lyme disease was not even remotely on my radar!
In late September I started feeling as though I had the flu. Each night I would lay on the couch, feeling fluish – achy, tired, nauseous, – but each morning I felt a lot better and so would head on into work. This happened for about four days, maybe longer, and finally, on the Friday, I took a day off work and slept. That weekend was miserable for me; my kids were in volleyball tournaments, and I, who normally never missed a game, spent my weekend on the couch, barely able to move. On Monday morning, I happened to glance in the mirror after getting out of the shower. I couldn’t believe what I saw on the back of my leg and immediately called Darrel! Darrel’s exact words were that it looked like I had a bull’s-eye on the back of my leg! Of course, at the time, I had no idea the significance of a bull’s-eye, and I surmised that I had a boil! I had had a boil when I was in grade six, and although this looked like it – red and angry looking – it didn’t throb, it didn’t itch, it didn’t hurt in any way at all. However, I “googled” what to do for a boil, and spent that day and night sitting on a hot compress!! Needless to say, the “boil” never came to a head!
The next day, the bull’s-eye had morphed into a “welt” that expanded to cover the entire back of my thigh, and wrapped around the sides. At this point, I began to feel quite sick and worried that I had some kind of blood infection. However, I was very busy at work as had organized a professional development day for about 20 teachers at my school. So, I went into work! That evening, although feeling miserable, I wanted to attend my elder son’s volleyball game. Thank goodness I decided to show my mother – a nurse from Southern Alberta – the welt on my leg. She immediately suggested Lyme Disease, and although I scoffed at her at the time, I later that night mentioned it to the medi-centre doctor. The medi-centre doctor, a very young woman, was shocked at the state of the welt on my leg and knew I had an infection of some kind, and she agreed that it could be Lyme, so she gave me one-week of antibiotics and sent me for blood work. At this point, I knew nothing of Lyme disease, and nothing of the hell ahead of me. I truly thought that my one-week of antibiotics was going to solve the problem!
By this time I had shooting pains in my muscles (it felt like blood clots were exploding inside me), I had neck pain, joint pain, headache, and I felt like I couldn’t get enough air and would sort of “gulp”. I was dizzy and had a slight tingling in my face and I had intermittend chest pain that felt like I was being stabbed in the right side of my chest. I was also absolutely exhausted, but could NOT sleep! I spent another weekend in misery on the couch, missing yet more of my kids’ tournaments, and on Monday booked an appointment with my regular doctor, who, it turned out, was on a one-month sabbatical from work! So, I went in to see her young replacement.
This young doctor prescribed me a second week of antibiotics and promised to do some more reading on the subject and she put in a referral to an infectious diseases doctor – who I would see in December. When I read my journal from the next three weeks it is difficult to even face. There is so much confusion and misery, and although I would feel better for a ½ day or so, and get optimistic about my health, I would then be slammed into hell again. In the end, after much negotiation and my own research, I was able to get one month of antibiotics from my replacement doctor, and I truly thought that would be more than enough to beat this disease.
In the meantime, a good friend had been doing some research on Lyme disease and suggested I look into hyperbaric oxygen treatments. This is standard procedure for Lyme in Germany and Belgium, and as I had just watched Under Our Skin, I wanted to do everything in my power to kill these bacteria, and not suffer for years like so many. Thus, I began hyperbaric oxygen treatment (with Gordon Ward of Canadian Hyperbaric) on October 25th, and I truly believe this was instrumental in my recovery. I had the most intense herxheimer reaction with hyperbaric, and finally felt like I had an ally in Gordon Ward, who truly cared about my recovery and me.
For Lyme patients, the herxheimer response is both a blessing and a curse! Although you are happy that bacteria are dying, as they release their death toxins, and you become sick, it is truly as though you are dying yourself. After two days of hyperbaric, it was a Saturday, October 26th, and my entire family was at a finals volleyball game – just another in a long string of games I would miss; I was in agony on the couch, and my replacement doctor phoned. She was extremely hostile and said that I must be feeling better after one month of antibiotics, and that she was writing on my chart that she would not give me more. I remember getting off the phone and sobbing alone in the living room; I didn’t know what to do from there.
Although the hyperbaric oxygen treatments were causing the desired herx response, I knew that I needed to get back on more antibiotics. My regular doctor was still not back at work, I couldn’t go back and see her replacement, and so I asked my husband’s doctor if he’d see me (he was also the doctor of my two sons and my mother). Although this doctor didn’t know anything about Lyme disease, he at first seemed curious, and willing to investigate. He suggested that although I would be seeing the ID doctor in December, that he call and see if he could get some information over the phone; I was thrilled! Silly me! At the next appointment, this doctor’s attitude was completely different. He said that the ID doctor told him that “there is no such thing as Lyme disease in Alberta,” that “Lyme patients are militant and just want antibiotics,” that “you are sick because you’ve been reading about Lyme disease and therefore are manifesting the symptoms,” and that “you can’t be sick because you look great!” He basically gave me every Lyme stereotype in a matter of one minute!! If I hadn’t been so beaten down, I would have laughed. Yes, Dr. Yan, there is Lyme Disease in Alberta, and yes, I would like antibiotics – I’m not asking for crack cocaine! Yes, Lyme patients are militant because they have been treated like lepers for years. Yes, I have been reading about Lyme because no doctor seems to know anything about it, and yes, I look pretty damn good today thank you, but you have no idea what’s going on inside my body!! Most scary for me was when he said, “I have many patients who are sick, and we don’t know why. That’s just the way it is.” I wanted to strangle him and say, “Maybe those patients have Lyme Disease!!!”
On November 3rd I did 4.5 hours in the hyperbaric chamber. It was a Sunday morning and I left feeling fantastic! I told Gordon that I wouldn’t be needing him anymore, and he just gave me a knowing smile and asked me to come on Monday for a follow-up just in case. I went home, made brunch for my family, spent an hour or two laughing around the table and I felt normal, and that I had finally beaten the bacteria! At about 1 o’clock I hit the ditch and had the most severe herxheimer reaction I have ever had! Needless to say, I went back to Gordon and continued with my therapy (at, I must add, my own financial cost).
It was around this time that I finally found my doctor in Calgary, and my journey changed dramatically. I finally had a doctor who treated my symptoms and not just lab results, who knew about Lyme disease, and who knew how to treat it. It was such a relief to have this woman enter my life, and I remember crying through my first appointment with her! I had only been suffering with the disease for a little over one month and I felt so despondent and alone; all I could think about were all the people I had spoken with who had been sick for years and ignored by our health care system. It makes me so angry I almost cannot think about it.
Although I finally had the help I needed, I decided to go through with my appointment with the infectious diseases doctor in late December. Although I was not optimistic, I felt obligated to go through with it; perhaps my story would be added to others, and perhaps the minds of these doctors would be changed; wow, was I ever naïve! The ID doctor was concerned with two things: first, had I traveled to a location with Lyme disease? I had not. Second, was my ELISA test positive? It was not. Therefore, her exact words were: “well, I suppose you could be the first Lyme patient in Alberta, but I doubt it.” From that point on, I simply nodded my head and agreed with her, and left feeling beat up again. She didn’t care that I had spoken to around 20 people from across Alberta who had similar Lyme stories as mine. She didn’t care that the ELISA test is only 20% accurate. She didn’t care that even Health Canada, in its Canadian Adverse Reaction Newsletter, says the following key points:
vSerologic test results are supplemental to the clinical diagnosis of Lyme disease and should not be the primary basis for making diagnostic or treatment decisions.
vLyme disease test kits have sensitivity and specificity limitations.
vHealth care professionals should be aware of these limitations and are encouraged to report suspected incidents, including false-positive and false-negative results, to Health Canada.
Of course, since that meeting, the Lyme Disease discussion has expanded throughout Canada, including Alberta, and there is now a National strategy for dealing with it. I am hoping that my Lyme journey is over, but for those still suffering, I hope this new Bill provides swift action and relief for you. However, I am still concerned by the fact that the news keeps referring to “confirmed cases” of Lyme disease! I am NOT a confirmed case of Lyme disease by Canadian standards and yet there is no doubt for me, nor my doctor, that I have Lyme and that I contracted it here, in Edmonton! I don’t want people to have a false sense of security by the fact that there are so few “confirmed” cases. If you happen to see me walking my dog in the ravine now, and I see you wearing shorts and bushwhacking, I will probably stop you and tell you about Lyme! I don’t want people to be afraid, I just want them to be protected.
My Lyme Disease was a textbook case (I even had the bull’s-eye which only 30% of patients get) and yet I still faced an absolute run-around by our medical system. I have only suffered for months, but there are people in this province who have been suffering for years and years! Not only do you suffer in your contact with the medical community, you suffer in your relationships with friends and family who have heard there is no such thing as Lyme Disease in Alberta, and therefore don’t really know how to believe you! You can sense their hesitation and doubt, and it makes you feel even more alone. Rather than having friends and family rally around you, you isolate yourself so that you don’t have to see their doubting glances. In addition, Lyme patients suffer financially. The treatments I have received are at my own cost, and I know patients who have spent in the hundreds of thousands to be treated in the US. So much for great Canadian health care! I also worry about those people suffering who have been misdiagnosed with MS, ALS, chronic fatigue and other diseases. In fact, one man from Northern Alberta was diagnosed with ALS, moved his son’s wedding up a year as they didn’t think he’d be able to participate the following summer, and in the end, he has Lyme!!
This is a brief synopsis of my journey, although I feel I could write forever about the last 9-months! I can only imagine the stories of others who have suffered so long. It is here, and I encourage our medical community to look to Lyme as a possible diagnosis. Treat aggressively, and your patients will be like me, with their life back after months rather than languishing for years.
Almost 9 months after first seeing that bull’s-eye, I feel like I have my life back. Yes, I had Lyme, but I feel so lucky.