Diagnosis & Treatment
Without typing things that I wouldn’t want my mother to read, who knew that a husband and wife could share Lyme Disease with each other? Not me.
While we’re not sure that’s how both of us arrived with Lyme, it certainly could be the case.
Sometime in the spring of 2015, my wife, Jenny, had been dealing with chronic urinary tract and kidney infections. (BTW: Our kids love it when we write about tinkle.) Generally, as I sought explanations for my seemingly unconnected collection of symptoms, I learned that the Internet can lead to some scary self-diagnoses. Type “hypoglycemia,” “brain fog,” and “memory issues” into Google and you’ll soon have high blood pressure as a new symptom. So, generally I now subscribe to the advice Billy Beane/Brad Pitt gave to his daughter in Moneyball: “Don’t do things like search the Internet.”
But Jenny found some password-protected discussions to query her issues that ultimately led her to a urological nurse practitioner who told her in their first conversation that 98% of her patients who come to her with chronic UTIs actually have Lyme Disease. While Jenny’s was a complicated diagnosis for reasons you can find on her blog, it was during this period that we became suspicious, then convinced, that I also had Lyme, this despite the fact that I had tested negative for Lyme previously.
That’s because my doctor ordered the wrong test. To diagnose someone with a Lyme infection that was more than several weeks old, you need a different type of test – a Western Blot test. It took months for Jenny to get in with her practice, and then it took several more months for us to make the leap to get me fully tested. (We were also paying out of pocket for all of this treatment.)
I remember during the appointment going through my symptoms one by one and the nurse practitioner nodding that each was a classic symptom of Lyme. “Hypoglycemia?” Yes, because Lyme can stress the adrenal glands. “Gout?” Yes, but more likely it was joint pain, but not gout itself, which is reflected in the bloodwork my PCP had ordered. (He thought it WAS gout despite a lack of evidence in the bloodwork.) “Acid reflux?” Yup. “Brain fog and memory issues?” She’s was nodding really hard at this point. “Neck creaking, like I have sand in my neck when I move my head?” Absolutely. In fact, she told me, that if you go to a Lyme conference, you’ll see all the men in the audience straining and popping their necks the entire time.
So, it was well before the official diagnosis finally arrived in early November 2016 that I already felt certain that I had Lyme Disease. It nonetheless was validating that I wasn’t a horrible hypochondriac. Better still, it could be treated.
She gave me several options for treatment, among which was the general approach of hitting it hard or hitting it not quite as hard. “Hit it hard,” I told her. Let’s get this done quickly.
She warned me. The harder you hit it – particularly people like me who’ve experienced a lot of neurological symptoms – the tougher the treatment was likely to be. Detoxification was vital. She recommended regular, vigorous cardio-vascular exercise along with regular use of a sauna. Sweat would be my new best friend.
No problem I said. I love to run and there’s a sauna at the gym.
Still, she said, as the Lyme dies off, it will cause you to re-visit some of your symptoms, perhaps even bringing on new symptoms. This also was particularly true for someone like me who had neurological involvement.
She counseled that I might want to take an additional step for detox – a weekly coffee enema.
Now, it’s only been in the past few years that I began DRINKING coffee. I had a hard enough time getting used to sending the coffee SOUTH. There was no way – NO WAY – that I was going to be sending the coffee NORTH.
But I had been warned.
So off I went with a daily dose with the antibiotic minocycline and twice weekly doses of another antibiotic, Tinizadole. In simplistic terms, the Tinizadole would chase the Lyme out of my soft tissues – particularly my brain – and the minocycline would kill those cells. All the while I would be detoxing with exercise and visits to the sauna (with not one drop of coffee going near my butt).
Relief was nearly instantaneous. My brain fog lifted. My sharp memory returned. I felt better than I had felt in years. I remember sitting down for Thanksgiving dinner and telling my family how much better I felt.
We played board games and I would win. I was funny again. Words and names and phone numbers that had eluded me for the previous two years came back to me.
It was euphoric.
But behind the scenes, the Lyme cycles would continue, even as the disease was being attacked. And it was during the die-off periods that I became susceptible to something new: depression.
On a rainy Sunday in early December, I had a really bad day. I just became inexplicably sad. I headed to the treadmill and the sauna at the gym and it was some measure of relief, but I had several days that I just felt horrible about myself.
And, then it would lift and life was great again and we cruised through Christmas and I was reminded of the past two Christmases when my undiagnosed Lyme symptoms were so bad that I felt that I barely could function or speak. I could concentrate like I couldn’t before. I kept joking with everyone that “my brain is back.”
But then the four-week mark would hit and on came the depression, except maybe a bit worse. I extended my exercise and was religious about it because I didn’t want to ease up on the treatment. I reasoned (with some legitimacy) that the more serious the side effects from the treatment, the more certain I could be that it was working.
Each time I contacted the nurse practitioner for advice, she would bring up the coffee enema as the magic elixir. “I AM NOT DOING A COFFEE ENEMA!!!”
February, March … I could feel the progress, but the Tinizadole-induced depression seemed to intensify and become more frequent. Problems that previously had rolled off my back no longer did.
I was walking around angry and sad, this while I was constantly dripping with sweat. Because I was exercising all the time, I was losing weight. And then the haze would lift and everything would feel great again. For my family, it was like they had five of the seven dwarves wrapped into one person – Grumpy, Sweaty, Stinky, Skinny, and Happy.
I eased up on the Tinizadole – once a week rather than twice a week. It didn’t help enough. So, we gave up on it altogether, but, you know, there is another way. “NO COFFEE ENEMAS!”
The progress, which seemed to come so swiftly at the beginning, came in more incremental doses. And while Jenny continued with the urological lyme practice, I decided to seek out someone who was a little closer to the house, with more extensive experience with men. (We are still thrilled with Jenny’s care, but needed to find a different solution for me.)
Image Courtesy of Barbara Siegal @look2listen
My new doctor boasts a pedigree in internal medicine from the nation’s best schools, and is involved in the latest studies coming out of Hopkins and Stanford. She wanted to try what they call “pulse dosing” and moved to that, tying the minocycline with a different antibiotic, Flagyl, and a mess of supplements. The supplements were meant both to smooth the neurological side effects while maximizing the performance of the antibiotics. And then, every four weeks, skipping the antibiotics altogether. The “pulse dosing” method tricks the lyme bacteria into thinking they are “safe” and then we hit them again when they “relax.”
I’m now one year into my Lyme treatment. I wish I could say it was a linear progression, but it hasn’t been. I probably have endured more dark days in the past year than I have in the rest of my life combined. But I’m nearly free of my Lyme symptoms. Some word-recall issues will surface every now and then. On any given day, my neck will creak more than I would like, but not nearly as frequently. And I am frustrated that it hasn’t completely disappeared, but I can tell I am on the mend.
Just last week, we changed up my antibiotic regimen and I’m told the treatment probably was always going to be 18 months in duration.
It has not been fun … but if there’s one thing I can say with the highest degree of pride, it is this: Not one drop of coffee has entered my butt.