Lately I’ve been looking at my life as a set of bowling pins. The bowler is life, and when all ten pins are gone, the show is over. I like the bowling pin analogy, because when one pin goes, it tends to knock down the other pins. If the ball strikes hard enough at the right spot, a lot of them topple. Many people go a long time without having any pins knocked over. Their bowler tends to roll a lot of gutter balls, or the kind of rolls that make the pins wobble without falling down. My bowler came out with a wicked spin before I was even born, knocking out the head pin. I’ve managed to reset the adoption pin over and over throughout my life, relegating it farther to the back. The knowledge of being unwanted when I was born has become easier to bear as I’ve gotten older.
At the age of seven, my bowler knocked down about eight pins when I fell out of a tree and fractured my skull. I managed to reset those pins when I came out of a coma with only the loss of hearing in my left ear.
After that, the bowler messed around for a good long time, knocking down a few pins here and there. Then I don’t know what happened, maybe the bowler took some lessons or something, because at twenty-one I was diagnosed with endometriosis. That knocked down three or four pins with every surgery and every new treatment, until I had all the lady parts taken out. The last surgery was when I was 42.
At each juncture, I was able to reset almost all my pins. By the time I got Lyme, I’d say I was at eight pins, ten being perfect health/life, and zero pins being, well, dead. Since then, Lyme has been the number one pin, with a shifting cast of health problems behind. I’ve started re-reading Dr. Richard Horowitz’s “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease.” Not a very exciting title, but it’s jam-packed with information. Aside from bartonella, most of my miseries are the secondary infections and inflictions brought on by an immunocompromised body. Dr. Horowitz calls this ‘MSIDS’, or ‘Multiple Systemic Infectious Disease Syndrome’. Quite a mouthful for what is essentially a pretty easy concept to get. He believes that diseases like Lyme open the door for parasitic or fungal infections, allergies, environmental toxicity, compromised immune function, and many others.
I’ve had all of these, labelled on the pins behind Lyme for varying periods of time. The grossest one wasn’t parasites, although that was definitely an experience. Note to all of you: deworming is not fun. No, the one that made me gag (literally) was thrush. My tongue and mouth were coated furry white with fungus. Most disgusting thing I’ve seen on my body. At my worst, I’d say Lyme and all of its shitty friends had me down to about four pins. I’ve reset many times in the last six years, although the amount of upright pins has dwindled to seven, maybe eight or so on my best days. That’s because I’m never completely well. There’s always some niggling symptom or problem.
The newest pin behind Lyme is not technically new. It’s a new name for a bunch of unexplained problems I’ve had since my early thirties, about the time I had my eighth surgery. I itch when I exercise. I’ve had an unexplained cough for over twenty years. I have random allergies, most definitely not seasonal, and sometimes I wheeze when I cough. I don’t know what it was, or is. The symptoms come and go, and have never been bad enough to incapacitate me. However, after I had the Johnson & Johnson vaccine, I had itchy, watery eyes, blurred vision, headaches, and itchiness over my body, plus a wheezing cough.
I read something on a Lyme forum about a ‘mast-cell storm’ after a Lyme sufferer had their COVID vaccine. This meant their immune system overreacted to the vaccine. At any rate, to calm a mast cell flare, doctors recommend using H1 and H2 histamine blockers. Sounded complicated, until I read more. Zyrtec and Claritin are H1 histamine antagonists. Tagamet, Pepcid, and Prilosec are H2 histamine antagonists. I was so miserable I bought some of both and took them. Within two days I felt much better, and I mean much better in general.
Is this mast cell storm a one-time thing, or something else? The information is, like Lyme, all over the place. Yes, it’s a real thing, called “Mast Cell Activation Syndrome,” or MCAS. And yes, there is a Lyme connection. But for me, these two little pills made a difference in those other problems I’d had for years. I’ll bring it up with my LLMD on my next visit to see if he’s had other patients with this.
Some people think this would be a failing of my doctor not to notice all these symptoms and put them together for me. I would say those are people who don’t understand how complex and perplexing MSIDs are. Part of my job is to help him by analyzing my symptoms and noticing patterns and unintended consequences, like taking medicines after the vaccine. Is it frustrating? Sure it is. But these kind of diseases are on the rise, so the model for patient-doctor-doctor-doctor relationships needs to change (I put a couple of extra doctors in there because Americans LOVE their specialists).
My bowler so far has been frustratingly competent, always knocking out a few pins. There have been no strikes, but there have been a few spares. It is inevitable that one day the bowler will roll a great, booming strike in my sleep—at least that’s what I hope. Because if I had my druthers, it would be when I am a ripe old age, after a fabulous meal. Some great sex would be nice, too, but then one can’t hope for too much.