“What Lyme Looks Like”
Here, Vermonters tell their stories of experiencing Lyme and tickborne diseases. If you would like to contribute your story, please contact us.
Roadblock – by Ellen B. Marshall
I have hit roadblocks so many times that my inclination is to work around them. And yet, this barrier to good health is both closer to me, now that I know what it is, and further out of reach since my funds to address it, and maybe any contributions from anybody who might have lent to me has vanished in the Coronavirus Pandemic of 2020. This is a case of the Profession vs. Patient, when I thought I was driving down the Parkway to Partnership.
My teeth are killing me. Well, not my teeth exactly, but the cavitation and infections brewing within and beneath them are. I’ve been told by several dentists that I have good teeth— even when I know they are not. Perhaps their work in my mouth looked good to them, along with other work done by dentists over my 65 years of life. Our water in Yellow Springs was fluoridated when I turned five. We brushed once a day, flossed only if something was stuck there. Our dentist worked on us without Novocain. Perhaps that was my mother’s choice, certainly it figures in my perpetual struggles with the medical establishment.
From Ohio to Washington, to Vermont, and now I count seven dentists as I moved to different locales around this state known for its ski resorts, maple syrup, and autumn splendor. Gold, enamel, lead-based amalgams, a few root canals, and veneers, it turns out all that artistry is harboring infection. All those different metals, gold crowns made from various mixtures, is irritating me like a battery attached to a pair of cheap earrings, the kind of annoying dingle-dangles I can’t stand to wear even for a day. The lead in my fillings is leaching into my bloodstream which my postmenopausal system is absorbing at a rapid rate. How can I tolerate this toxic feeling any longer?
There’s more. For the past two years I have been trying to treat a complex case of Lyme, Bartonella, and Babesia, all tick-borne bug infections. The teeth, among other out of the way places, is where the spirochete buggers go, hidden from all the stuff in my bloodstream that I’m taking to fight them. It’s not simple. This has been gaining on me for more than 20 years. In that period the docs diagnosed my Bartonella mood swings as Bipolar illness. Our general practitioner declared my bulls-eye erythema migrans a clear case of spider bite, even though I remember that hitch-hiking tick I found under my waistband, camping in the hot spot of the Hudson River Valley of New York. And my counselor implicated my imagination too, such a sudden crazy illness, was that not due to the recent birthing of my son at 40, or at least my trauma history and jumpstarting contact with my family again?
“This is the emergence of a mental illness,” said my family doctor who knew me the best. And I understood it was hard for him to tell me that. Over time, these well-meaning practitioners have cost me years off my precious life. I tried to tell them it was tick bite. Efforts at research, a trip to Lyme specialists in Boston, and supplements to combat a suspected case of early Lyme all proved to them that I was headstrong and way too susceptible to suggestion.
Down the mental health sinkhole I slid. Hospitals, community mental health treatment programs, it was a long, 20 year detour. The impediments, yes I’m telling you that ever-changing cocktails of psych meds are blocks to thinking clearly, kept me from finding a secret route around the inside-the-box thinking of the MD medical establishment. Was it just because they were trained to think in this self-sealing way? Or because in self-defense, insurance against malpractice lawsuits mandated them to think reductively?
Psych meds kept me from getting help in order to get well. The neurological symptoms of my actual disease complex blended with the brain and body effects of mood stabilizers, anti depressants, anti-psychotics, benzodiazepines, and sleep meds. When my hip, leg, and ankles seized, I had no alternative than to start a slow taper off the psych meds. Three were implicated in joint and muscle side effects. No practitioner offered to help me with a taper. None thought is wise or necessary. But I was fortunate to find a Harm Reduction Taper group an hour drive from my home to get me started.
In group I found support for my frustration. Being disregarded made me livid as it also made me brave. I knew something else was going on. Compounding the problem was the self-designed respite and two moves I made, each to find safer living quarters, from lead, molds, toxic water, and pernicious relationships. There was no 15 minute appointment that could address my needs.
Each doctor tried to start at the beginning with the least expensive tests covered by Medicare. They tried to convince me that I was well, but just chose not to act that way. I ask, wouldn’t you be upset and annoyed in this trap, trying to find care? I have tried many referrals from friends and assorted practitioners, researched articles and books, spent years in physical therapy, chiropractic, naturopathy. All along, our favored allopathic medical system which my insurance sometimes pays, the MDs and APRNs were occasionally helpful, although never correct. Each removed the treatments they didn’t understand and added the treatments they promoted. It’s been a steep learning curve, trying to ascend both sides, my needs vs. the systems’ design to serve its own needs. At the least, I was looking for practitioners who could listen well, do some research, hold the unexplained in suspension, even someone who could tell me they that didn’t know what’s wrong but they would stick with me to find out.
It may not sound like it, but I am trying very hard not to look back. Even though my hips were crippled by Lyme, and they’ve stiffened because my weekly social dances have been cancelled, I will still attempt to jump this roadblock. Most people in panic react, from their deepest habits, all or nothing, black and white. Newspapers report increasing COVID-19 numbers of sick and dead, warn of impending crisis, misinformation, and misappropriation. Watching television is worse. Our internet is overrun with special articles, ads and notifications from businesses on the precautions they’re taking, what we should do to stay safe, candidates to fund, huge sales on products to save us from the actual, and save us from our fears as well. My question, the same one as President Lincoln’s question during a military surgeon’s talk sometime during the Civil War is, what about the patient?
The biggest hurdle to getting my teeth fixed now, to lower the assault on my immune system that’s blocking my body’s ability to clear those bugs out, well it ain’t even the puzzle of finding the money now. Today’s viral, world-wide assault has crashed a giant boulder across my personal drive toward health. I feel ambushed by the screeching halt and reset required by this pandemic. Surely the resulting impact on our social systems, our economy, and our food production capacity will echo for generations. Few people are working today. Nothing about our occupations is the same. Supplies are dwindling. But the clever are adapting.
I believe my body is my temple. I need it to hold my spirit in this present world for as long as I can. As I see my mission, I’m supposed to take good care of my body and do good deeds with it. Pausing for reflection, I see some good news ahead. The air is clearer. Traffic minimal. People are starting to do and give what they can. Already, connections grow with family and friends. More walkers pass our house and wave hello. We have more time for projects, for relaxing, for mindful eating. There is nothing like a pandemic to re-order one’s priorities! Some people might argue with this. I admit I have not done one task in the past week without thinking, You’re doing THIS rather than THAT as Rome burns?!? Yet in the end, it does not matter if the forsythia bush out front gets trimmed of dead branches, the perennials raked of winter leaves, pollinator flower seeds planted. This month I have cut and hauled, sorted and arranged, surely admired many jobs well done. So shall I hurry to check on my accounts, on the biologic dentist’s schedule? Evidence suggests that the patient and the system are one. We have ample time for reflecting on what is important. Truth be told, this is just how I want to go, be it with or without my teeth.