Still Alice; Still Lyme

My book club decided to read Still Alice by Lisa Genova for our next meeting. It's a realistic fiction novel about a neuropsychologist who discovers she has Alzheimer's at the age of 50. Moi--reading about another disease that affects the brain? Haven't I researched enough with PANDAS and Lyme?  This was not my first choice of reading material by far. But I like my book club too much to miss a get-together.

One of my best friends is reading this and her dad has Alzheimer's. It's got to be hard to see your own family in this.

I see myself.

For the record, I do not have Alzheimer's and I doubt I carry a gene for it. My dad is intellectual at 82 (sorry, Dad, I know most people think you're around 70) and my mother is a little younger and still brilliant. One grandmother lived on her own and was the coolest, brightest woman until she became ill at 93; she succumbed only because she preferred death to dependency. She's my hero. My other grandmother lived to be 99 and 8 months, and probably would have lived longer had she not smoked for 80 years. 

So long as I'm not hit by a car while bicycling, the path is set for me to live a long life. I'm not a smoker, am just a social drinker, never did drugs, do exercise. I take probiotics and am surrounded by people who love me. I could live to be way over 100. Maybe. If Lyme doesn't get me first.

Lyme Disease can mimic Alzheimer's. Dr. Alan McDonald has conducted research in which spirochetes showed up in the brains of deceased Alzheimer's patients.

"Dr. Alan MacDonald: “Using the syphilis model, I began to study some autopsied brains, and found that I was able to identify spirochetes in autopsied brain tissue in the hippocampus, which is one of the areas that Alzheimer’s disease tends to target in every patient. I was able to grow spirochetes from autopsied Alzheimer’s brain tissue, and stain the spirochetes with special monochromal antibodies, through the techniques I learned and developed through the study of stillborn babies with Lyme disease. And those two positive results made me think even more strongly that some Alzheimer’s might be like syphilis, a late manifestation of the bacterial infection in the brain, not to say that all Alzheimer’s disease is related to Lyme disease, but some."

In Switzerland, Dr. Judith Miklossy followed up his study with her own and came to the same conclusion.

Can Lyme ruin my brain?

This summer, I switched from treating herbally to taking minocycline. I was so fatigued all the time I was treating without antibiotics but just as much so during the reign of minocycline on my body. The brain fog was bad, I was dizzy a lot, my memory was long-gone, and my executive functioning skills challenged, especially with any stress. I filled out papers for a medical evaluation for my daughter, laid them on my desk and forgot they were there. Two days before the deadline for the papers, I noticed them on my desk. They had completely been wiped from my mind. I had to overnight them. 

Like most parents of children with PANDAS or Lyme or Autism or cancer, I'm a researcher, a thinker/doer, a fighter. I use my brain constantly. It's my most meaningful body part! I've always been intelligent and creative--If I don't have that, who am I?

I'm on doxycycline (and more) now and my head is a ton clearer. I don't know if it's because the minocycline cleared something out or if the doxy is just more effective. But I still have lapses when it comes to some vocabulary, or names, or recall. Yesterday, a song was on the radio. I knew it so well--I not only listened to the song many years ago but also sang it while playing my guitar. However, I could not think of the singer's name. Two hours later, Carly Simon popped into my head. 

In the past, I was never like this. I could multi-task like a pro, keep a running list in my head, have the calendar mapped out. I'm linguistic and I like to read and write to learn information (I detest watching Youtube how-to videos for that reason.) I also have pictures in my head of the year and the week, as well as number lines that look like game board boxes. It's a little bit of synesthesia perhaps, which, I once read, does not make me smarter but gives me a different way of looking at the world. I picture the calendar like a giant oval game board with each month a separate room and I step through each month. Events are tied to the months. 

In the book Still Alice, Alice contemplates life while losing her cognitive processes. This book came out before Brittany Maynard took her life in Oregon under the Death with Dignity Act to spare herself and her family the effects of her degenerative brain tumor. It is easy for me, in a healthy cognitive state, to decide how I would like to end up. 

Still Alice also discusses medications--like Namenda--that are in our lexicon. And IVIG, and experimental studies wherein the patient might end up receiving a placebo and not get treatment after all. We considered the Yale IVIG study when it first came out but we didn't want to put our son through an experiment that might not help him at all (and good thing, too, because Yale is not known for being up-to-date with Lyme treatment.) And as in real-life, family members research and get genetically tested themselves. I'm not giving too much away because I haven't yet completed reading the book. I must tell you this: once you begin, it's hard to put the book down. Lisa Genova is a wonderful writer. Her characters become my own famiy members. The suspense builds.

Alzheimer's is a horrible life sentence. We desperately need more treatment options for any disease that affects our thinking, emotions and our way of dealing with the world, whether it be PANS or Lyme or another type of autoimmune encephalitis (as in Susannah Cahalan's highly-recommended memoir Brain on Fire.) If long-term Lyme Disease can so dearly affect our brains, we must have more research. It's one thing for me to double-check the spelling of a seldom-used word, it's another for me to have complete memory lapses. Don't tell me it's my age. When I went on the doxycycline, my brain fog lifted and short-term memory began returning. I know myself. I know my brain. 

But our children don't yet know who they are. They don't understand why they struggle so in school, why they forget the papers they need to complete an assignment, why their short-term memory has gone missing. They don't understand why they can read a page and suddenly not understand it when just yesterday, it would have made sense. They just begin to believe that they're not bright.

Clearly, long-term therapies are needed. Anti-inflammatory treatments are also necessary. I can't give up on treating my own case of chronic Lyme Disease, but if and when I do go into some sort of remission, I need to maintain a healthy brain. I must teach my children to do the same. 

It's time to stop writing and start reading the end of Still Alice. I think I know what I would do if I were in her position and I want to see how it all works out in the story. I wonder how many more parallels to dealing with PANDAS and Lyme I will find as I read. Meanwhile, researchers are still searching for clues, for treatments and for the means to recovery.