My sons used to make fun of me when I asked the same question a fourth time. They no longer do that. I explained to them that sometimes I just do not remember certain conversations. I don’t know why I remember some and not others. I don’t know. It might be a level of distraction was occurring that prevented the response to go beyond my ever precarious short-term memory so that it could enter long-term memory. It could be that on some days my memory is blocked. It might be that when I am in a headache mode (weeks of constant headaches) that my brain is just not working right – okay, I KNOW it isn’t working right.
Within a few weeks of becoming very sick with Lyme disease in the summer of 2006, I began to have neurological symptoms. Even though the medical literature at the time indicated that those with neurological Lyme disease, or neuroborreliosis, should receive IV antibiotics, most physicians in Connecticut would only give three weeks of oral doxycycline at a time. Treatment guidelines by the IDSA and CDC prevent physicians from treating in any other way. Insurance companies persecuted doctors who attempted to treat outside of these guidelines, grabbing medical records, reviewing them, and kicking physicians out of insurance networks. It got very ugly for doctors here in Connecticut, the epi-center of the disease. I had three courses of that antibiotic. Each time, my symptoms would improve somewhat, but they never completely went away and they always came back, worse each time, until I was a nearly nonfunctional blob on the couch.
I have written about my partial recovery in previous posts, effected by long-term antibiotics (prescribed by a Lyme-literate physician who no longer treats Lyme disease because the insurance companies chewed her up and spit her out) and a lot of reading and writing (as occupational therapy). I determined to get my brain function back and I worked hard at it. I exercised (very gentle, low-impact, simple exercises), read simple books, wrote very short essays on my first blog, started cooking and baking again, planted a vegetable garden, eliminated GMOs, switched to organic as much as possible, and started college. I fought back against Lyme disease every way that I could. I am still negatively affected by this disease, presently in a downward cycle.The worse part is not being able to make mental connections. It isn’t that I don’t see things and critically evaluate them. It isn’t that I am not inspired socially and politically by current events and am unable to make arguments on my own opinions. It is that sometimes I just hit this big, grey wall in my memory. I have written about the loss of my visual memory. I was a visual learner my whole life until a few years ago, depending greatly on what I had seen to remember information. I now have a grey screen where those visual memories previously existed. So when I need to remember a word, I must search for it online, doing internet searches, looking sideways for connections that will lead me to a single word, the appropriate word for what I am attempting to convey in my writing. It is a lot of work. But I do it. Why? Because if I don’t do this, I will just wither up and die. I could just go to bed. In a few years I will most likely die from heart disease, ALS, MS or any of a number of diseases that Lyme disease sufferers die from. On autopsy, Lyme DNA is usually found in the brains of these people. That means Lyme spirochetes lived in their brains.
I have an appointment with a neurologist on July 17th, the very first one I will see since I became sick with Lyme disease in 2006 and had my first neurological symptoms. Eight years is long enough to wait to address what this disease is doing to my brain.
This week got a bit scary for me. My next post will discuss the latest stage in what I consider a degenerative disease (if not treated long-term).