As a patient with neurological symptoms from Lyme Disease, such as brain fog, memory problems, difficulty with communication/word-finding, neuropathy (nerve pain), and drooping face, I have had two MRIs of my brain to check for any damage. These MRIs were completed several months apart. The first came back normal, and the second showed some spots in my brain which could be benign, or could be cause for concern.
Back in September, I saw a neurologist in hopes of finding out if there was any cause for concern with regard to my brain health. Due to a mistake on my part, she was not able to view the images from my MRI scans, but still examined me, and asked for a full history of my illness and treatment. She then treated me to a lecture about how I couldn’t possibly have Lyme Disease anymore, after all the antibiotics I’d taken, and that remaining symptoms don’t signify remaining infection. She criticized my doctor’s treatment plan (even though that is NOT her field of medicine), suggested some rehabilitation therapy that could be helpful, and sent me on my way.
Side note: Someone should award me a medal for self control, as I have not mailed her a nasty letter with photocopies of my three POSITIVE Lyme Disease tests, taken in September 2014, January 2015, and January 2016, evidencing a continued infection…BUT I DIGRESS.
With my neurological symptoms persisting as months passed, I tried to look for a neurologist in my area who was, at the very least, not a Lyme Disease denier. My search turned up nothing, nada, zilch. Finally, I was given a recommendation from one of the doctors at the practice where I am being treated for Lyme. He shared it with the caveat that this neurologist had been “okay for some patients.” Better than nothing!
I went to see this “okay for some patients” neurologist a month ago, and I am happy to report that it went very well! I had with me my January 2015 & 2016 positive Lyme Disease tests, and the discs of images from both of my MRI brain scans. The neurologist was kind, attentive, and accepted my Lyme Disease test results as what they are: FACTS. There was a technical problem with one of the MRI discs, so he couldn’t get a full picture, but with what he was able to see, his examination of me, and the details of my illness that I shared with him, he concluded, “Based on all of this, I don’t see a reason to be concerned about your brain.”
At the end of the appointment, I was ready to head out the door, and my wife thought to ask, “Wait, if there isn’t something wrong with her brain, why does she continue to have these symptoms?” Great question, babe! This is why she comes to appointments with me. The neurologist explained that the Lyme Disease has done damage to my central nervous system. Because there has been nerve damage, I can and will continue to have these issues like face droop, nerve pain, etc, when my symptoms are flaring, I am tired, etc. The persistence of these symptoms does not point to brain deterioration, rather a damage that has already been done, which makes my body more likely to respond to stress, tiredness, etc through those weak areas.
This means that even after a full recovery from Lyme Disease (which I am very much hoping / fighting for!!), I may still see these symptoms pop up throughout my life when I am tired, sick, stressed, etc. Only time will tell.
But – my brain is okay!!! My brain is okayyyy!!!!!!