Dear Doctor’s, there’s something you need to understand…
I believed you every single time you misdiagnosed me.
I believed you when you told me I had chronic fatigue syndrome.
I believed you when you told me I had anxiety.
I believed you when you told me I had depression.
I believed you when you told me I had PTSD and Panic Disorder.
I believed you when you told me I had Central Sensitivity Syndrome and that there was no known cause or cure.
I believed that you would have told me if the Lyme testing wasn’t accurate.
I believed that you would have told me if my test came back positive. (Note for the public – did you know that your GP is legally allowed to tell you that your Lyme test came back negative when it came back positive? I didn’t.)
I believed that you had my best interest at heart, not a political or private agenda.
I believed you had my back.
It’s funny to me, that after all this time of advocating in the mental health world and understanding how many gaps there are within the system, that it hadn’t crossed my mind that those gaps are in the general medical system as well.
Four and a half years ago I started coming to you with strange, seemingly separate, symptoms. First major swelling and pain behind my left eye in the winter of 2014. Then I was getting sick a lot, feeling run down but not enough to notice a pattern. In the summer of 2015 I came back to you with numbness in my fingers and toes – they would go completely white and I wouldn’t be able to feel a thing. Then severe, abnormal and painful bloating and cramping. It felt as though my lower abdomen was an overfilled balloon and I couldn’t find a pin to pop it. Sciatica, severe noise sensitivity, three disc bulges and a general, in-explainable feeling of over-whelm in my body that did not match anxiety (I would know, I’ve been there too!).
I had bronchitis and a sinus infection, at the same time, in the middle of August. I was going through a very stressful time in my life, so I believed you when you attributed it to that.
Winter of 2015 I was back with weakness in my hands, wrists, legs, ankles and feet on both sides of my body. My hair was drastically thinning from the scalp. I had overwhelming fatigue, dizziness, light-headedness, my heart would race and flutter, new difficulty concentrating, nerve pain that felt like electric shocks were shooting through different parts of my body at random. It would feel like all my insides including my brain, were vibrating against my skin, but I didn’t feel shaky on the outside. My limbs would jerk suddenly and involuntarily. My muscles would spasm. I was shaky and weak with pain all over, mostly in my joints, muscles, head, and still my eye – along with worsening vision – even though the eye symptoms were supposed to be solved by me getting glasses the year before. I was unsteady on my feet and frequently confused with some memory loss. I broke out into hives after being in the sun, had tingling pins and needles everywhere, intense, bed soaking night sweats, and cold sweats during the day.
The stress had been removed from my life, but we still had no answers as to what was wrong with me.
Sometime during this I asked about the possibility of Lyme disease. You agreed to test me for it but explained that it was very unlikely that Lyme was the answer. What you didn’t tell me was that the Canadian Lyme testing is only about 53% accurate or that even if my test comes back positive you are legally allowed to tell me it was negative, because of your clinical diagnosis. I am choosing to give you the benefit of the doubt and to believe that you possibly were not aware of this information either, and maybe some of this has been innocent mistakes on your part.
February of 2016 you told me you thought you’d figured it out. Central Sensitivity Syndrome you said. There is no known cause or cure, but you placed me on a two-year wait-list for the Complex Chronic Disease program and told me that that was my only option, and then put me on Cymbalta for nerve pain. You were compassionate and kind but admitted that you had nothing else for me. I believed you.
I remember leaving your office and crying in my car, scared of being diagnosed with something that had no known cause or cure, but vowing to myself that I’d already beaten the odds with my mental health and I would do it again with this. You had told me that I wasn’t likely to decline any further, but that I would learn to manage it the way I do my mental health. I knew that I would do anything and everything to learn how to self-manage and live a fulfilling life.
Except I continued rapidly declining until I had days that I was entirely bedridden besides crawling on the floor to get to the bathroom. I often couldn’t remember my family or friends’ names. I forgot how to write a cheque and couldn’t understand the basic instructions. I could no longer read. One single flight of stairs was always a challenge and often an unrealistic one.
All my previous symptoms had increased in level and frequency and I now had more to add to the ever-growing list: dots in my sight, stomach pains, disrupted sleep, random bruising, jaw stiffness and pain, tingling pressure sensations in my forehead, muscles feeling like I imagine a slug would feel when salt is poured on them, extreme pain in my upper abdomen, weak legs, collapsing, eyes not processing properly, aphasia.
I sobbed in your office and begged you to help me. I let you know that I thought my body was shutting down. That’s exactly what it felt like. I thought I had to be dying. You made it clear that you could not help me any further.
A few different people told me to investigate Lyme disease. One even made me look up the symptoms in front of her – all of them matched. I brought this list back to you but still, you said it wouldn’t be Lyme. I believed you.
For two years I trusted you while the infections invaded deeper into my body and brain.
For two years I believed that Lyme disease and its co-infections were not a concern for me.
At 24 years old I was showing many symptoms for Alzheimer’s, MS, Parkinson’s, Chronic Fatigue Syndrome, Fibromyalgia, Central Sensitivity Syndrome and Psychosis.
You did worse than nothing. You made me believe that what was killing me was not an option.
I was left to heal on my own. Or die. Either way, on my own.
If it wasn’t for the several other Lyme-infected people in South Delta, or my amazing Lyme-literate Naturopathic Doctor with prescribing rights in Steveston, I would surely be bedridden by now, if even still alive. I honestly don’t believe I would have made it. I was already almost bedridden by the time I learned that I actually did have Lyme disease and co-infections, including exposure to West Nile. Almost a year into treatment I had begun actively considering and discussing the right to die. We were spending so much money on private treatment, you still didn’t believe that I had Lyme, or any infection for that matter, and it wasn’t even safe for me to go to a hospital because the second Lyme disease was brought up, I would receive a lecture (sometimes multiple) on how Lyme disease isn’t in this part of the world, and how it’s impossible that I could have it. I would then promptly be sent for a psych evaluation. I was even threatened that if I chose not to complete the psych evaluation that I would no longer be treated in the ER until I followed through with it. As you would have seen from the results of that evaluation however, it came back stating that there is nothing wrong with my mental health. I believe the psychologist’s words were, “just because they can’t find anything physically wrong with you doesn’t mean there isn’t”. She seemed as frustrated with her time being wasted as I was to be sent there.
There is a governor general award-winning internist in Alberta who accepts Lyme patients through a naturopath’s referral. Thank the Universe, someone in our medical community who is properly educated on Lyme disease and bedside manner. After seeing me he wrote you a letter informing you that he has confirmed Lyme, West Nile and co-infections in me. I haven’t read the letter yet, but I know what he told me he was going to say, is that I really am sick due to infections, and that it’s entirely unreasonable to expect me to work a full-time job or live a full-time life. That if I was in Alberta I would have been offered support immediately. This was so uncomfortable for me to hear, as I simply don’t view myself as being disabled but I know that it was what I needed to hear from a doctor and I know that it’s the truth. He deeply and sincerely apologized to me for the way the medical system has treated me thus far, even though he is actively doing everything he can to be part of the solution. You told me that maybe he needs to get other doctors to hear him and join him, but maybe you need to start listening. You can’t pretend that the Lyme community, including the few Lyme-literate doctors we have, are quiet about this issue. I even gave you the phone number and email address of a Lyme-literate GP in Maple Ridge who said she would be happy to speak to you, but you admitted to me in our appointment today that you never spoke with her. I have given you several documents and literature on the subject of Lyme disease but you haven’t read them. I have advocated and educated as much as I could in every appointment I have had with you since learning that I have this disease. I guess you didn’t hear me.
I understand that you might have 200 patients with diabetes, mental health issues, heart disease, etc and that as a GP you are only responsible to know a little bit about each illness, so that you can help such a wide range of patients. You have explained this to me along with informing me that I am your only Lyme patient. I must ask you, if you left me misdiagnosed for so long, how do you know that I am your only Lyme patient? How many of your other patients are suffering like I did? How many other patients have you told outright that they do not have Lyme disease, when maybe they actually do?
In our appointment today I said to you, “now that you have the letter you needed to recognize that I do in fact have Lyme disease and co-infections, I need to know that the next person to walk in this office like I did, is not going to have to go through the same hell that I went through.” To which you responded by saying that I had to understand that I did all the leg work for myself, and that the next patient will have to too.
Are you fucking kidding me?
I lost so much time believing that Lyme wasn’t a possibility because you told me it wasn’t.
Is it not your responsibility as a doctor, now that you know that this disease is real and is affecting your patient to then learn about it so that you can prevent my experience from being your next patient’s experience as well? Should it really be up to the patient to figure out how to save their own life when we pay you and trust you? Do you not have a responsibility to the public? Is it not safe for us to trust our doctors?
Mistakes happen. We can learn from them so that more people do not have to needlessly suffer. When I walked into your office this morning, I expected things to go well. I expected you to have fully read the letter sent by my specialist, and for you to acknowledge that you made a mistake. You were not properly educated on the subject and you didn’t know any better. Although you did acknowledge that I did all of this on my own, not once did you apologize. You hid behind the system and took zero ownership. When I started to cry and told you that I just needed to know that this would not happen to the next person, you couldn’t even give me that. Not once did you apologize or say you made a mistake. Not once did you take any ownership at all. “The next person will have to do the legwork too,” you said. Okay, fine. You can’t treat Lyme. You are not educated enough in it. I get that. But you wouldn’t even tell me that you wouldn’t tell the next person that they don’t have it. You wouldn’t tell me that you would let your next patient in this situation know that they may want to investigate Lyme disease outside of the mainstream medical system.
I asked if you would share the letter my specialist sent within your office, to educate the other doctors on the reality of this disease and how our mainstream medical system is dropping the ball and its costing people their lives; family’s their loved ones; the government their money. You responded that with my consent you could share it with colleagues for another opinion and to see if you missed the mark on something, if maybe you’re behind. No. I don’t think you’re behind. Yes, you missed the mark, but I believe any other doctor in your office would have done the same. I don’t need a second opinion within your office, clearly, as I had to travel out of province for that. I’m asking you to share that letter not for a second opinion, but to educate. To be part of the change. I am asking you to step up and be part of the solution.
I was lucky. I was open enough about my struggles that the right people heard and were able to help. The people around me knew me well enough to know that this type of struggling wasn’t normal for me. They knew how motivated and active I was. They could see that something was clearly wrong. My parents were able to help pay for my testing and treatment. My friends were able to help around the house. Mostly I am lucky that I learned so much from working through past mental health issues that I had the coping strategies to get through this as well. As you admitted, none of this is thanks to you. Please, I am begging you, be part of the next person’s solution and not part of their problem like you were for me. Take this mistake and make it worth something.
I don’t expect you to know everything. I do expect you not to do more harm than good.
For anyone reading this who believes that they could also be misdiagnosed, please check out the MSIDS Horrowitz Questionnaire as a valuable and free resource to help you determine whether or not you should find a Lyme-literate doctor near you.