Here are letters I'd love to send to some of the doctors I saw in 2011. Of course, I never will. But writing them was cathartic, and a reminder of what I was up against in getting proper treatment for Lyme disease.
Dear Emergency Room Doctor #2,
I'm sure you don't remember me. I was an ER patient in February of 2011.
The night I came with my husband to the ER was one of the worst nights of my life. I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms. My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'.
You listened to me, but couldn't piece together all of my symptoms. You did arrange for an immediate CT scan, though, which revealed nothing abnormal. Your resident gave me a neurological exam. You then pulled my husband aside and asked him if I was doing illegal drugs. He told you NO because, of course, I was NOT!!! Why did you feel the need, just a short time later, to ask him this same question again? Why did you not believe his answer? Did my symptoms appear to you to be some kind of drug withdrawal symptom? Was I acting like a drug addict?
You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify.
I left the ER with no answers, and two prescriptions: Ativan and Imovane. I was to take them together to help me fall asleep.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Emergency Room Doctor #3
I'm sure you don't remember me. I was an ER patient in March of 2011.
My husband drove me to the ER because I was so physically ill and overcome with anxiety. Feelings of dread were just washing over me, and I couldn't control it. I knew I needed help.
My body was literally shaking as I lay on the examining table. I just couldn't control the shaking or my emotions.
I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.
You really were a very kind doctor, and I appreciated the time you took with me. You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.
I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Doctor of Psychiatry,
Perhaps you remember me, who knows? I was a patient of yours in the spring of 2011.
I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.
You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill. How my tender glands and low-grade fevers factor into this, I do not know.
I talked to you about my fears, and my belief that I had Lyme disease. You listened, but refused to consider it.
When I finally received the positive blood test results, I was so elated to finally know what was wrong with me! I came to my appointment so excited to tell you that I had an answer!
But you didn't want to hear anything about it.
You cut me off. You scolded me. You told me that you did not need a lecture on Lyme disease. You told me to stop treating your office like a medical clinic. You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.
What was the problem exactly? Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me? Were you insulted that I challenged your diagnosis? It was never my intention to sound as though I was second-guessing what you were telling me. But I had to dig deeper because I just felt so physically ill. I was truly expecting you to be thrilled for me that I had a positive Lyme blood test. Instead, you reprimanded me. I will never forget how you treated me that day.
That was obviously the end of our doctor-patient relationship.
I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good. One by one, the symptoms started to fade away, and I have regained my strength. Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Neurologist #1,
I'm sure you don't remember me. I was your patient in January of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'. You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.
Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to. Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me. Your answer was 'no'. You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.
I showed you my positive Igenex test results, and you were very skeptical. You glanced at them, and told me that you would consider it a 'negative' result. Why would you say it was negative, when Igenex called it positive? I have several positive bands on the Western blot. Do you have any expertise in reading Lyme Western blots?
I never saw you again. What more could you do for me?
I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S. I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Neurologist #2
I'm sure you don't remember me. I had an appointment with you in March of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI. You couldn't find any reason for the symptoms I was suffering from. But you said I looked 'anxious'. True enough. But anxiety was NOT the cause of my symptoms.
When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.
When I asked if this could be the result of Lyme disease, you quickly dismissed that idea. "No, Lyme disease wouldn't cause this."
Well, in fact, it can. Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely,
Paula
Dear Endocrinologist,
I'm sure you don't remember me. I came to see you in March of 2011.
I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.
You were very kind, and you spent a lot of time with me. You said that there was nothing endocrine-related that would cause symptoms like this. But you told me to keep searching and to leave no stone unturned. And that is what I did. Thank you for that advice.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Infectious Disease Specialist,
I'm sure you don't remember me. I had an appointment with you in May of 2011.
I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document. I had also received a positive Lyme blood test from Igenex. I was so hopeful that I would find some answers at this appointment and finally receive treatment.
You spent a lot of time with me, listened patiently, and spoke thoughtfully. However, you did not believe I had Lyme disease despite my positive blood test. You felt that it was improbable, and said that our medical system works on probability. You believed that it was more likely that my symptoms were caused by anxiety. I'm still not sure how tender glands and low-grade fevers factor into anxiety. I'm also concerned about the 'probability factor' in diagnosing someone. This would overlook quite a number of people who have rare conditions, would it not? I'd rather be treated as an individual, not a statistic.
I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease. Your response was, "So? I have a cottage next to that park." Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park? I'm not following the logic.
You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam. You said that they make their tests more sensitive. Isn't sensitive actually better? Have you researched this lab? Do you know their track record? Do you know the results of government inspections on the lab? If you looked into it, I'm sure you would be satisfied with their reputation.
I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++). Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them. And here I was, with a triple positive for band 31 - a very strong reaction. And I've never had a Lyme vaccine. But you just ignored all of this valuable information.
You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'. I thank you for that, truly! Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a
herxheimer reaction on day 3 of the treatment. The herx lasted for 6 days. It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later. So thank you.
You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all. And yet I was left to suffer.
I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later. Almost all of my symptoms have disappeared. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test.
Sincerely yours,
Paula
