I was having a conversation with a medical receptionist recently. She’s from the East Coast, has a friend who has Lyme, and has been experiencing a decline in her health. She went to her primary care at Kaiser here in the Bay area, and asked about Lyme Disease. She was told that “Lyme disease is a fad, it’s just something everyone thinks they have right now”.
My biggest problem is the opposite. In spite of substantial medical evidence, I go through long periods where I doubt the diagnosis and search frantically for a different explanation for my symptoms. I’ve been doing that for at least the last few months. I have thyroid disease, so I blamed all of my symptoms on that. But after experimenting with different doses of thyroid medication, I now realize that there is a baseline level of sickness and pain that I experience everyday whether my thyroid is stable or not.
I was bitten by a tick. I got sick after the tick bit me. In truth after the tick bit me, it slowly plowed through the rest of my life, flattening everything in its wake. I lost my job, my self-esteem, my professional reputation and my credit rating to Lyme.
The pain is difficult for sure. But the psychiatric effects of Lyme are very debilitating. I’m beginning to notice when I read other Lyme bloggers websites that there is a very characteristic picture of what a brain infected with Lyme acts like. The psychiatric symptoms of late stage Lyme are well documented within the literature, but are not often talked about or acknowledged.
The symptoms are so insidious that most of the time I am completely oblivious that I am experiencing them. I’m not saying that I don’t notice the anxiety, depression, suicidal thoughts, paranoia and depersonalization I experience everyday to varying degrees. But what I don’t often realize is that these symptoms are part of Lyme disease. And when the symptoms intensify during die off it begins to feel like a big psychotic mess. No part of my brain seems to be able to organize itself enough to say,
“You’re missing the big picture here. Biological toxins are affecting every thought and emotion. You’re not going crazy. You’re killing microorganisms that produce endotoxins when they die. It’s the Lyme, not you.”
Lyme disease has a profound affect on your brain and nervous system. But there are external factors as well. When you tell people you have Lyme and they dismiss you, it makes you feel like you are crazy. You know how debilitating your symptoms are. But then you end up in front of a doctor or multiple doctors who imply that you are over exaggerating your suffering. When you tell people about Lyme, and explain the controversy regarding the diagnosis and treatment, their eyebrows begin to rise. They will point you to websites that tell you that LLMD’s are charlatans who have convinced you that you have a disease that does not exist. You start to wonder, is it just me? Who do I trust? What can I rely on?
Two weeks ago I had an appointment with a new neurologist. I’ve seen about a dozen neurologists in the five years that I’ve been ill. My LLMD is also a neurologist. The purpose of the visit was to rule out muscular dystrophy due to my symptoms and because it runs in my family. I’ve seen other neurologists about this but have been dismissed by most. This neurologist did a more thorough exam than his predecessors. It seems most neurologists do whatever their version of the Neuro exam is and if they don’t see anything blatantly wrong (i.e. you are in a wheelchair) you are dismissed. That’s been my experience anyway.
I prepared myself mentally and emotionally for the visit. It’s not uncommon for a bad doctor visit to send me into a death spiral of depression and hopelessness. It doesn’t help that I’ve received much of my care from Stanford, which I always thought was the best there is. And I have had some really good experiences there. But I have seen enough doctors at Stanford to get a feeling about their position on Lyme Disease. To the majority of doctors of Stanford, there’s no such thing as neuro-lyme. When I told my pain management doctor at Stanford (who is amazing) that I had been diagnosed with Lyme disease, he took me seriously and made an appropriate referral to the infectious disease docs. The medical staff called me about the appointment and demanded a copy of my western blot test results before they would make the appointment. By then I already had a LLMD and I wasn’t going to subject myself to their scrutiny.
Many of the doctors I’ve seen do the same thing I’ve been doing recently. Denying that Lyme is real. They pretend not to see it on the medical record. Or when you tell them about it they say a quick “Hmm” and change the subject. Or they will flat-out say that none of my health problems could possibly be related to Lyme disease. I can’t imagine another disease that doctors would treat in such a way. And that’s where the craziness starts. Who am I to claim that I have symptoms from a disease that one of America’s leading health institutions says doesn’t exist?
Often it will be one comment on the part of the doctor that takes me down. Two visits ago, when I went to see a neurologist about my Chiari diagnosis, which mysteriously appeared after I contracted Lyme disease, the doctor said to me, “Has anyone ever tried to figure out why you’re in so much pain?” I’m thinking, has this guy even looked at the electronic medical record? The past four years of my life have been consumed by trying to figure out what’s causing this pain! And each doctor’s opinion, it’s all in the record.
It’s a big problem that I present well, as in people have said I don’t look sick. Prior to becoming ill, I was not the kind of person who ran around looking for sympathy. I learned at a very young age to hide my pain and that process is wired into my nervous system. And I always see these doctors in the morning and after taking a pain pill. The truth is I have to try to plan my day so that I do anything I need to accomplish before 1:00. After that it’s very unpredictable how I’ll be doing. My brain becomes filled with scrambled thoughts and the muscles of my head, neck and upper back and upper arms contract involuntarily causing pain that makes me feel like my muscles are being pulled away from the bone.
Ironically the day after I saw the most recent Doc, I woke up with one of the worst migraines I’ve had in a long time. I think it might have been from moving my shoulders around so much trying to show the Doc how deformed in appearance and function they’ve become. They stick out of my back like wings. Something that also mysteriously appeared after contracting Lyme. I spent too much time telling the doctor about my shoulders and very little about my pain. By the end of the appointment it was clear he thought my concern was about the appearance of my shoulders when he asked me, “But, really how much do you feel the shoulders are interfering with the quality of your life?”
“The pain related to my neck and shoulders is the number one thing affecting the quality of my life,” I told him.
It was too late by then to try to get him to understand the level of my suffering. I think this happened with the other Doc also, because at the end of the visit he suggested I try ibuprofen. The answer at the end of these visits is always the same. There is nothing to be done and they have nothing to add to the diagnostic picture. They all agree I should have another (my third) cervical steroid epidural since they helped relieve my pain for three months the last time.
The day after the visit I got a survey from Stanford asking me in a roundabout way if I thought I needed a pain psychologist. Maybe it was just a coincidence, but it bothered me anyway. Not that therapy isn’t a good thing but just because I began to feel as if their collective opinion was that my symptoms aren’t real.
I left that last visit with gratitude for the wonderful neurologist I do have, who is Lyme-literate and who has treated me at every visit with respect and care. She never dismisses my concerns and always wants to know my perception of what is happening. It makes a huge difference, and I am so lucky to have her.
I don’t want to have Lyme. I don’t want to have a controversial illness that is difficult and costly to treat. I don’t want to be dismissed by doctors and even worse by people who I thought cared about me. I don’t want to have Lyme, and yet, I do.