I know when I was bitten; it was on a 300km hike, through a high tick infested area with one day resulting in 7 ticks on me, one engorged and attached. It was in a tough spot to reach, next to one of my shoulder blades and I was alone and had difficulty removing it. As a profession, I managed 50 parks and natural areas and was annually trained on tick and Lyme prevention. I was always told, “just let them know your profession and you will be treated for Lyme instantly”. I promptly got sick after my hike and was sent to an infectious disease specialist. So, how is it that I ended up with Chronic Lyme? I can blame myself a little but I also have to lay some blame on the “system”. It fails people with Lyme every day. If it can fail me, no wonder it is failing hundreds of thousands annually.
Initially, I thought the breakdown was the fact that after 2.5 years of my family doctor sending me to every specialist around, she went on leave for a year and a half. She always took me seriously and often referred to the fact that she felt I played down my symptoms. I think I did so because I was embarrassed to always be going in to see her with a new issue. I went years without seeing her before and all of a sudden everything seemed to be going wrong. I was always very active and loved adventure and endurance sports. I took very good care of my body and ate incredibly well in an effort to prolong how long I could do these types of activities. Months after she left on leave, things started to decline rapidly. In two years I went from participating in a half Ironman to having trouble walking for more than 5 minutes on a treadmill, slowly. I had lost feeling in many areas of my body and the pain and stiffness felt as if I ran a marathon daily.
It was when it hit my brain that I could no longer deny something serious was going one. Inreflection, I should have acknowledged that fact years earlier but when professionals keep telling you how healthy you are, you start to think its all in your head. Who was I to argue with cardiologists and internal medicine? At that point, I was resorting to memories from decades before, as if they were recent. I used old email addresses, went to old work locations and would forget something before I even picked up the pen to write. I couldn’t remember directions to a location I had gone to for years and seemed to have no control of my left arm. I had trouble speaking because words escaped me and then the thought would leave while I searched for the word. I should have been more concerned with the physical symptoms but as anyone who participates in endurance sports knows, pain, stiffness and mobility issues often come with the territory, so I started to tell myself that the years and events had caught up with me. Regardless, not be able to walk first thing in the morning, because your feet and legs won’t support you, should have been a sign. I would walk down the hall holding both walls until I was able to get better mobility to get down the stairs.
It was thanks to a colleague who directed me to a specialist in the US. I was told that I could seek treatment there, I would just need the support of my GP back in Ontario. I went into my clinic asking to see the Doctor filling in for my GP. I have to admit, I never expected the encounter I had, in my wildest dreams. it was the sort of thing that only happened in movies. I had been warned that Doctors in Ontario and parts of Canada don’t agree with Chronic Lyme or Lyme treatments, that they may hesitate to support me. I thought ” but they will see the years of specialists I was sent to and think, well it worth investigating”, right? Wrong! She snickered when I spoke to the cognitive issues. She asked me “why do I want it to be Lyme?” To which I replied ” I don’t. But it’s something and I need to resolve before it gets any worse.” She suggested we start back at the beginning and redo three years of specialists visits. I said to her “in those three years I have gone from running seven hours to walking minutes – do you not think something is really wrong with me?” She responded “yes” and started to walk out of the office and stated, “I hope you find what you are looking for.”I started to cry and wished ever so badly my doctor wasn’t away.
I went to the US and was diagnosed with Lyme and 2 co-infections. I traveled to another clinic in the US, that also supported that diagnosis and spent most of my savings on treatment. As I recover back in Canada, I had asked the Executive Director of the Clinic for another doctor. They refused and insisted I see the same doctor. After several attempts to talk to him about it, my emails were ignored. Shortly after this, I heard that Doctor was gone and another was replacing her/my doctor. So I booked an appt to see her. My blood tests were showing issues and she quickly told me I had to stop the meds I was prescribed in the states. She stated that “In Ontario, they treat Lyme with two weeks of Doxycycline” to which I responded, “yes, for acute Lyme. But this is Chronic Lyme, I’ve been battling it for over 3 years.” She stopped typing, but did not look at me and shook her head (ever so slightly). I had brought all my paperwork from the US and she scolded me saying, “I don’t have time to go through all of this, You will have to make another appointment.” Thankfully she did go over a brief portion of the history and made some notes in the computer.
The one major credit I will give this doctor is she called me back in the following week because she had done some research. Not research on Lyme but on the medicine I was taking, since it is not available in Canada. She felt it was too strong and I should never take it again. In consultation with my US doctor, we waited for my blood tests to return to normal and I decided to resume the meds because they were the first thing I had done that was making a difference with my cognitive issues.
Months later my blood tests were showing other issues not related to the medicine but likely related to the Lyme. I made another appt with the clinic and was pleasantly surprised to find out my Doctor was back. Oh, what a relief! I had waited a year and a half and finally, someone who knows me will be able to help. I figured she would be shocked at what it turned out to be and even more shocked to hear how bad I had gotten from it. I have to admit I was so thrown off by her reaction that I was not prepared to ask for an explanation, that I still would like to this day. She was ever so friendly and acted happy to see me. She asked what I wanted to talk about, to which I said, “well, its a really long story.” She replied, “no, I read through your history, so no reason to go over that.” That “history” would be the quick notes the last doctor made while in a hurry to not go over my 15-minute appointment. I was a little stunned, so responded with “well, then I guess we should talk about my blood tests.” I referred to the Lyme and how supplements can affect the Lyme. She responded with “that’s between you and your US specialist.” I sat stunned and it was at that very moment I realized how abandoned and in crisis patients were in this province/country/world.
I had traveled through 8 months of treatments and recovery, praying for the day my doctor would return. She knew me, she believed in me, she never let me down…till now. How could anyone deny I had Chronic Lyme, the treatments were helping. It couldn’t be in my head, I was improving. I wasn’t asking for help, just support. At that moment, I realized that all the other stories I had heard about Lyme patients being abandoned, shamed, ignored and mistreated by their own doctors were true. If my doctor, the best doctor I had ever known, could not even care to listen to me, hear me or find out what was going on, any doctor could. I have to admit at that moment I should have asked for an explanation, but I was too stunned. This isn’t even close to how I expected this appointment to go. I also knew this process had made me harder, because I at least made it to my vehicle before I started to cry.
There are a lot of theories out there as to why Doctors are so scared to deal with chronic Lyme. I personally know of two in Canada who have been charged or warned for treating Lyme and others who diagnose and believe in it but have to send patients to the US to avoid losing their license. The Minster of Health sent a letter to the College of Physicians and Surgeons of Ontario stating that Doctors are to diagnoses Lyme based on clinic information because they have finally realized that the blood tests are not accurate. They Canadian blood tests only detect one of over 33 strains in Canada and three strains in the US. So it only makes sense that there are so many false negatives. But this letter is not enough. The fear, the charges and the risk of losing their license is so great, they don’t even want to hear a patient speak of it. How are they to learn the hundreds of symptoms that evolve over time if listening scares them? Does that not constitute neglect? You have a patient in pain, losing their mind and declining at a rapid rate and you don’t want to hear a word of it? You don’t even want to listen to their story even if you do or don’t believe it? If anything, do we as patients, not deserve to be listened to?
In all but one of those appointments was my blood pressure, temperature or blood oxygen level checked. All of which had been problems in the past. But that’s okay, like the majority of Lyme patients I have learned to check those things myself, much like finding help and treatments. But I still believe if there is anything I deserved in this process it was for someone to just listen to me for one minute, to hear what the symptoms are, what treatments I was seeking or how I am doing now. But no one in the medical community will listen, truly listen. We are so far away from “first do no harm” if no is willing to even listen.
If you don’t believe me, you just need to listen to Lori Dennis, a Registered Psychotherapist who just released the book “Lyme Madness”. Unlike many Lyme patients who are just too sick or tired to fight, she lived the craziness through her son’s battle and was so horrified at the medical community that she wrote about it. She is able to articulate what seems so confusing to us patients. IN her book she states ” Thanks to the CDC and IDSA, Lyme sufferers are forced to be warriors on this medical odyssey – navigating this disease primarily, on their own, with very little guidance. It’s time the medical community stop negating and debating the existence of this chronic disease and start listening to the sufferers and their suffering. Before long, they too will be affected. Maybe then they will get off their high horses and pay attention to this undeniable level of anguish and affliction.”
I really don’t care what Doctors believe or don’t believe. I really don’t care what the big agencies say about Lyme disease. At a minimum, as a Canadian Citizen, who pays into a provincial health care system, I deserve enough care that someone takes the time to listen. At a minimum, do I at least not deserve that?
The front of Lori Dennis’ book “Lyme Madness” summarizes it best “WHERE MILLIONS ARE SUFFERING…AND FEW ARE LISTENING”