Wandering through the chronic Lyme fog
When sauntering through the dunes and on the beaches of the Outer Cape, there’s nothing like the solitary experience of passing through the fog. Loren Eiseley wrote of a miraculous experience he once had when his spirit seemed to have moved timelessly into the fog. For an afternoon, it can be downright surreal.
Over the last couple of years in these circles, there’s been another type of fog that has refused to lift. It’s not the ground cloud form of fog, but one brought about by illness — and there’s nothing surreal or even remotely enjoyable about it.
The result has been chronic Lyme disease, a.k.a. Borrelia burgdorferi, along with an aggressive co-infection, babesiosis.
It’s all been courtesy of Ixodes scapularis, better known as the deer tick or black-legged tick. The minuscule arachnid affixed itself to this host, at best guess, in July or August of 2011. You read that right -- seven years ago.
Exactly where, when, and how it happened remains a mystery to this day. The pinhead-sized parasite might have hitched on in the woods of Brewster, the dunes of Truro, or just outside the sliding glass door off my living room.
There was no bullseye rash, but flu-like symptoms, mysterious infections, and unexplained aches and physical discomfort followed over the closing months of 2011. Then came more intense arthritic-type pains, which migrated from one joint to another, day to day, week to week, over the next few years. Every now and then, a foot or knee would swell up like a softball, and a cane was needed just to walk around the house.
By the summer of 2017, the pains had subsided substantially, but periods of brain fog, short-term memory lapses and the inability to concentrate took over in a big way. A simple trip to the Post Office or supermarket ended up in driving several miles out of the way, all because the destination was temporarily forgotten while behind the wheel.
Even coming up with the right words at any given time were now more and more frequent. The ability to multi-task — a professional and personal talent for so many years — is now on the shelf and out of reach.
When one writes and conducts research for a living, yes, this can be a problem.
Facial numbness (left side), blurred vision, obstructed hearing, tinnitus, headaches, shortness of breath, anxiousness, irritability, insomnia, fatigue — these were all becoming part of the daily routine. Afternoon cat naps were turning into marathon snooze-fests.
In June of 2017, the long-time ability to walk seven miles in one shot, 30-plus miles a week, was still there. By January of 2018, a slow two-mile walk would result in exhaustion.
Finally, in March of 2018, a nurse practitioner suggested a test for Lyme. One of these was done back in 2011, but it turned up negative, which is common in the first few weeks and even months after infection. The list of symptoms since 2011, though, couldn’t be ignored.
A week later, the phone rang. It was the lab.
“The first test came back for positive for Lyme. The other panels take a few more days, so we’ll know more then.”
Two days later, the practitioner called. Seven out of 15 positive panels are needed for a Lyme diagnosis. Ten turned up positive.
“You lit it up, Don.”
The obligatory sigh followed. “What do I do now?”
“Four weeks of antibiotics — doxycycline. It’s the standard treatment.”
Four weeks later, nothing had changed. The doxycycline didn’t make a dent. What now?
“Sometimes it takes a couple of months for the symptoms to subside.”
Another obligatory sigh. “OK.”
By June, it was becoming painfully obvious that nothing was changing. A visit to the nonprofit Lyme Awareness Center of Cape Cod in Mashpee proved to be enlightening.
“This isn’t just going away,” I was told. “You need to have this taken care of before you end up bedridden or, worse, dead.”
The stubborn corkscrew-shaped Lyme bacteria, referred to as spirochetes, aren’t just in the bloodstream. They set up camp everywhere, even in the brain. A hardcore neuro-Lyme party was in full swing.
After two weeks of referral hell from the primary care physician’s office, an appointment with an off-Cape Lyme specialist, pointed out by the Lyme Awareness Center, was arranged. He’s a “Lyme literate” physician, which is now a qualification for any doctor who treats me.
That was five months ago. Heavier doses of two antibiotics, nystatin and azythromyicin, were prescribed, along with an anti-malarial medication for the babesiosis (which took an uninsured blood test to detect). Also on the slab are eight different vitamin, probiotic, and herbal supplements, none of which are covered by insurance.
Treatment has to be done slowly. We don’t need the dreaded Herxheimer reactions further complicating things.
In July, the primary care doc sent me to a neurologist in their group, who insisted that I didn’t have chronic Lyme, only symptoms of acute Lyme, which she said was gone after the doxycycline treatment in the spring. I damn near walked out of the office five minutes into the appointment. After she consulted her supervising doctor, they determined that it was probably best to offer me a few neurological tests (I declined), but that I should probably stick to the specialist’s regimen.
My lesson from this visit: if you don’t acknowledge chronic Lyme, don’t waste my time or money. Like so many doctors, the neurologist was deep into the CDC playbook, which shoves this “no such thing as chronic Lyme” mandate down everyone’s throats. Meanwhile, thousands upon thousands of people are being ignored while their symptoms worsen. For those of you who follow my social media timelines, you’ve seen my frustration over this vented more than once.
Oh, yes — I’ve also had two more positive blood tests for Lyme since the neurologist visit. Acute Lyme symptoms, my ass.
In my 58 years on this earth, I’ve never experienced a health issue quite like this. It’s life-altering. There’s good days and bad days …. actually, it’s more like “there aren’t really any great days, but some are OK and some just flat out suck.”
“You don’t look sick,” is a line that all of us “Lymies” hear. Trust me, we’re not well. You just can’t see it.
While I’m still capable of writing and interacting with the public, it’s a lot harder now than it was just a couple of years ago. Writing and researching projects that used to take an hour or two to accomplish can now take an entire day; what took a day now takes a week. A lecture or more than a few hours of work usually means resting or conserving energy the day before, and recovering the day after.
Even with all of this, there’s still plenty to be thankful for in my life, and, yes, there are worse illnesses one can have. I’m not dying, as far as I know, although the possibility of death or debilitating illness certainly exists for many who’ve been bitten by the eight-legged mini-vampires. There are much more severe tick-borne sickness cases than mine. Still, I wouldn’t wish this on anyone.
I have but one goal of telling this story — the hope that the public will develop a better understanding of how tick-borne illnesses can affect anyone’s life — personally, professionally, and financially. I’ll spare you the “use deet, tuck your pants into your socks, and do tick checks” bit. Yes, we all need to recognize that, but for years, everyone else in the media has been rewriting and regurgitating that press release, and not much else. So much more needs to be done in the medical community. A few baby steps have been taken, but we’re years away from treating Lyme and its ilk properly.
My old self wandered off into the fog a long time ago. Whether he comes back, even some of him, at all remains to be seen. Right now, the cognitive, memory, and fatigue issues are the biggest hurdles. “I just want my brain back,” I’ll say several times a day.
The prognosis going forward? There’s at least another month or two before “getting better” is even in the equation.
“There’s some improvement,” the specialist determined last week. That probably explains how a little more writing has been done over the last few weeks, and a return to teaching a local history class is on tap for January. The other projects that I’ve had going? They’re on the shelf.
As the specialist added, “You still have a long way to go.”
So be it. Off I go into the fog, continuing the long journey. Eisley’s miraculous experience must be out there somewhere.
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Here’s a good summary of what a typical chronic Lyme disease patient is dealing with on a regular basis.