Day 3: Happy Birthday, Husband, With Love From the Shadow of Your Wife

The IV lounge was full today, its many chocolate leather recliners already occupied when we arrived this afternoon by patients mostly much older than we are. My heart sank when I realized Jake wouldn’t be able to hold my hand as Misty, our blond nurse with a honeyed small-town accent, sunk the needle into my arm for the third day in a row.

I tried to recline, to close my eyes and focus on my breathing as the cold took hold in my veins; my left arm rendered useless by the needle that was tethered to the tube that ran up to the bags that held my cocktail of vitamins and acids that were hooked to a thin metal chain that dangled from the ceiling—the paneled foam kind you find in schools and doctors offices. Husband sat opposite me, giving me the last recliner and settling into a chair that looked more comfortable for a few minutes of conversation than for an hour with a needle stuck in his arm.

Only a few minutes after we settled in he stood up and unhooked his IV bags from the chain, careful to keep his stuck arm straight so that the drip would keep on dripping. He crossed the room to retrieve some tissues. He had seen the tears begin to roll down my cheeks as I, deflated and small in my big Barcalounger, gathered all the force I could find just to suck air into my lungs, my muscles fighting back against every breath with an inward tremor. I was beginning to sputter, a thing that happens lately when I begin to panic, my stomach in my throat where my heart had been before it jumped out and ran for the hills.

Day 2: A Needle-Phobe Survives Neural Therapy

I don’t have the mental juice to write much about today’s experience, so here’s a nice video of me getting like a thousand shots in my skull. Well, really it was 15 total, about half of which are shown here. (And here’s some info on neural therapy. It’s controversial.)

Day 1: The Couple That IVs Together, Stays Together

Two years ago today, Boyfriend and I embarked on a 10-day adventure to learn how to sail. It was the week of Jake’s 40th birthday, and sailing had long been at the top of his bucket list. I too had dreams of sailing—mostly romantic notions that involved me drinking Champagne in a sundress while a handsome man did important-looking things with ropes—and so off we went, on an expedition that would seal the deal: Wherever we drifted, we would chart our course together.

Two years later, I married my sailor, and rather than the Mendocino getaway I’d planned for his 42nd, we are here in exotic Pocatello sharing intravenous cocktails of vitamins and hydrochloric acid.

Here’s how Day One went down:

In just one day, I think I’ve already spent more time with Dr. Jason West than I have with the gynecologist I’ve been seeing for nearly a decade. Total face time: nearly two hours. (He has five sons, loves prime rib, and is afraid of snakes. Also, he proposed to his wife while playing an upright piano on a mountaintop 22 years ago today.)

After an in-depth review of our Lyme tests, labs, health history, current symptoms, treatment considerations, and astrological signs (no, not really), the real fun began.

The Live Blood Analysis

With quick pin-pricks to our pinky fingers, Dr. J added small drops of blood to glass slides for viewing under the microscope and up on a flat-screen TV. The pictures? Psychedelic album cover art at its very finest. Ladies first.

Did you know that red blood cells are supposed to look like nice round circles rimmed in bright white light? Imagine a full moon with the center knocked out. My red blood cells look like “Bart Simpson’s hair,” in Dr. J’s professional opinion, indicating a major hormone imbalance. We also saw Lyme spores, Lyme biofilms, and Lyme at the intracellular stage, which might indicate late-stage development of the bacteria—but no spirochetes, the corkscrew-shaped bacteria that causes Lyme disease. (Remember, I did a two week course of antibiotics, which are effective at killing early stage Lyme if you catch it and treat it right away.) The Lyme wasn’t alone in there: We also found intestinal parasites. Joy! Not to mention plenty of candida, a little fungus, and a whole host of red blood “ghost cells” that put me at some neurological risk. Not to mention the protein puddles and inflammatory markers in my dry blood that indicate risk for MS, Alzheimers, and other super fun things.

Based on all this, Dr. J gave me a 4 out of 10 on the Lyme scale if 10 is the very worst—better than any of us expected given my crazy symptoms. Can you imaging being a 10? Now Jake.

Husband’s Lyme test had shown stronger positive results than mine had, so I was kind of expecting a doozy of a blood show. And while not quite as eventful as mine, his live analysis didn’t totally disappoint: There were plenty of little parasites, spirochetes, biofilms, candida, and disease-causing fungus to keep us entertained.

In the end, Dr. J compared us to glue: Jake is superglue—strong and top shelf; I’m Elmer’s—the pasty one with a sludgy immune system that’s barely holding me together.

IV Therapy

After the fireworks, it was off to the IV Lounge for a three-bag cocktail: 50 grams of vitamin C mixed with other delicious immune-boosting goodies; hydrochloric acid; and hydrogen peroxide. And let me assure you, your veins can tell the difference between friendly vitamins and aggressive acid however diluted. By the end of the hour, my left arm felt like a punching bag on the set of Creed.

The Gameplan

About six hours after we first entered the West Clinic, we had solid chiropractic adjustments and paid for our respective treatment packages: Jake would need only the Premium tier—two weeks of IVs, Prolozone injection therapy, ozone insufflations for the parasites, and bodywork that rings up around $7,000. But Elmer here will be needing the four-week (two now, two in September) $11,000 “Lyme Hardcore” package which includes all of Jake’s treatments plus neural therapy injections in my skull to reset my neurotransmitters and ease my constant headaches.

I repeat, injections in my skull.

And no, insurance doesn’t cover it. But if this works, it will be the bargain deal of the century—a South Bay couple I know has spent $100,000 in their quest to conquer Lyme over the past 10 years.

The Aftermath

Immediately following treatment today, I felt exhausted, headachey, and a little nauseated. You know, my usual. But the pain in my arm subsided, and I was able to eat some dinner and write this blog with a cup of CBD cocoa. Meanwhile, Mr. Superglue is barbecuing chicken and drinking Shiner Bock.

PS: Dr. J says Lyme disease can definitely be sexually transmitted. Check yo self.

 

The Treatment Plan: We Are Now Entering a Drug-Free Zone

Anyone who knows me will tell you I’m a little bit self-indulgent. I am more than okay with this—it’s an MO I’m proud to have inherited from my father. We believe life should be about joy. So if I gain a few extra pounds or a die a few minutes sooner because I drank an extra glass of Champagne with my cheeseburger, then mission accomplished. We’re alive to live, not to stave off death. All things in moderation, as dad always says.

So, beacon of health that I am, you can imagine that giving up all my favorite treats is really quite the buzzkill. But once I kick this Lyme thing, it will be party, party, party, and please pass the bug spray. Well, we’ll see. Lyme, apparently, is a study outside the comfort zone.

And so it is, in the spirit of sucking it up, that Jake and I decided to travel to the Pocatello, Idaho clinic of Dr. Jason West where, for the next two weeks, I will be poked with various needles until, I imagine, all the Lyme bacteria will ooze out of me like puréed potato through a sieve. Have I ever mentioned that I’m highly needle-phobic? Suck it up, Hennen.

There are men within my sphere of influence whom I consider to be true healers: Dr. Francis Murphy, a Dallas-based chiropractor famous in the healthcare community for a discovery that changed the lives of patients with frozen shoulder; and Dr. Gilles Lamarche, a wonderful Canadian national, chiropractor, and VP of Life University in Marietta, Georgia who was diagnosed in 2004 with primary pulmonary hypertension. His medical doctors prescribed double lung and heart transplants, without which they gave him two years to live. More than a decade later, the 61-year-old Lamarche ran a 5K race just this past weekend, having 100 percent healed himself through regular chiropractic care and healthy living. A-mazing. These two gentlemen advised me to see, and Lamarche kindly introduced me to, Dr. Jason as we shall henceforth call him.

Known as Dr. J to his existing patients—we are not yet on an initial name basis—Dr. Jason is a fourth-generation chiropractor, naturopath, and authority on treating chronic illness though cutting-edge (and antibiotic-free) methods. He is the kind of man who takes the time to talk to you on a Saturday, who dresses up as Goose instead of Maverick on Halloween, and who pens a blog called “Daily Dose of Vitamin H”—H is for hope, naturally.

(I H-for-hope that Dr. Jason is also the kind of busy man able and willing to squeeze in another patient at a moment’s notice—we learned just yesterday that H-for-Husband also has Lyme. Hi, we’re here for IV therapy. Do you have a couples suite available?)

When we arrive at the West Clinic on Monday for our six-hour appointment, Dr. Jason will first examine our blood under the microscope and beam it for us to see on a flatscreen TV. (Pass the popcorn!) From this, he will get a sense of how far our infections have progressed and will design specific treatment protocols for each of us. This 10-day process (2-3 hours daily after day one) will likely include:

• High-dose vitamin C (75-150g) plus minerals, administered via IV daily
• Oxidative medicine—usually major autohemotherapy  (“the immediate intramuscular or subcutaneous reinjection of freshly drawn autologous blood” according to Wiki)
• Ionized detox therapy
• Chiropractic therapy
• Neural therapy (read: shots) or acupuncture
• Nutritional supplements + Paleo diet

The philosophy: The body is ingeniously designed to heal itself. The objective: Give it the tools it needs to do so.

If you build the body up, repair the broken systems, get rid of toxins, and don’t eat junk food, then you typically get a really good clinical outcome. We treat the patient individually and balance everything in their life—biomechanics, biochemistry, hormones, food and diet, relationships.

—Dr. Jason West

This is a philosophy I believe in, even if I am writing this at 1am because I’m too anxious to sleep. You know what else I believe in? Proof:

For anyone interested in learning more about Dr. Jason West’s approach to treating Lyme disease, or in the western vs. chiropractic and integrative medicine narrative, I highly recommend the film Doctored. Drs. West, Lamarche, and Murphy all make excellent appearances.

Is Lyme Disease an STD?

“Love in the Time of Lyme,” it seems, is the perfect title for this blog. My darling husband—the soulful, dry-witted, and devastatingly handsome man who’s been carrying us both these last many weeks—also has Lyme disease. We found out last night.

There is always some risk of getting Lyme disease from a tick bite in the woods. But there may be a bigger risk of getting Lyme disease in the bedroom.

—Dr. Raphael Stricker, internist, San Francisco

Many of you will be shocked by this news, but Husband’s test results—which returned yesterday from iGeneX with an even stronger positive result than my own—weren’t a complete surprise to us. Well, not for me anyway. While Jake continues to believe he is Superman (“I was born with a six-pack,” he actually said to me, total deadpan, on our very first date), it was my naturopath, Dr. Dara Thompson, who suggested he get tested.

“It’s possible that Lyme can be sexually transmitted,” she said.

Pardon me while I scrape my jaw off the floor.

But sure enough, in January 2014, a team of researchers—including molecular biologists, a veterinary microbiologist, a dermatologist, and San Francisco–based “Lyme literate” internist Raphael Stricker (who notably treated author Amy Tan for Lyme disease)—published an abstract in The Journal of Investigative Medicine making the case for Lyme as a sexually transmitted disease.

Magic in the Minutiae

Saturday, May 28, 2016

Husband and I made love this morning. I think I had been vaguely planning it, a kind of desperate strategy to take advantage of my time off meds and that hopeful first hour of the morning before my body begins to really ache and my legs begin to fail. It was careful, sweet sex, the kind any teenage girl would hope to have, bound in the arms of a man who takes that whole sickness and health clause to heart. In our 18 months of marriage, we have survived Jake’s massive blood clot and pulmonary embolism, and now we are only just beginning to embark upon Lyme. There was morbidity beneath the surface, this feeling of now or never, do or die, my cheeks stained with tears as I clung to his arms, his athlete’s back, as if I could draw his strength into myself and let it sustain me until god knows when we’ll be able to do it again.

Today is a good day.

Gratitude has become so cliché lately—the It frame of mind we’re all strategically adopting in our ongoing quest for sublimity and success. Or so thought my cynic’s mind before life came and bashed out my knees.

A Good Lyme Is Hard to Find: Real Patient Stories + Myriad Paths to Wellness

Barely two weeks into oral antibiotic therapy—the standard course recommended by the CDC for the supposed full recovery of Lyme disease—I couldn’t walk, eat, sleep, work, think. Life as I knew it had utterly collapsed—I had gone from vibrant to disabled in a blink. I smelled like a jar of Tiger Balm. Desperate to temper the inflammation in my joints, I gave up the whole milk in my morning cappuccino, the Josey Baker seed feast bread I used to slather with fresh Brie, Pilates, high heels (really shoes in general), and my most beloved of all treats, Champagne—those who know me well just let out sighs of true sorrow. It was time to get a second opinion…and a third…and an eighth. And not just from doctors.

#fallrisk + Some Facts About Lyme Disease

“At least we scored matching socks!” Natalie laughed, having kicked off her heels to settle in with me in the emergency room at UCSF Parnassus.

My sister, you see, is excellent in a crisis—funny, pragmatic, and willing to get her hands dirty. Wherever you need to go, this 110-pound girl boss will carry you. Also, we always dress alike.

But as my friend John pointed out: “Alas, in medical practitioners’ eyes, they don’t match: yellow means fall risk. Poor dear!”

Poor dear is right. You try going pee in the ER bathroom, your yellow-socked feet picking up god knows what with their cheap white tread, while the nurse and your sister both insist on waiting “right outside the door!”

All joking aside, it was this visit to the ER that confirmed what Natalie and I had already learned about the traditional medical community’s views on Lyme disease. See, we had both watched the same horror flick documentary.

Let’s zoom out from all this gross personal oversharing for a moment and take a longer view on Lyme disease. Shall we?

Myowhatus? The Case for Neuro Therapy for Lyme Disease

Friday, May 27, 2016

I shaved my legs in the shower! Exclamation mark not gratuitous.

Fueled by this feat of strength, I managed to do a load of laundry and tidy up the kitchen. It’s all been piling up in the absence of functional me—poor Husband spends all his time making me scrambled eggs and rubbing castor oil into my belly “in the direction of my colon.” This latter bit of witchcraft is intended to help reduce inflammation in my body, but seems mostly just to make a mess.

But by the time I reached Dr. Azzolino’s office just before 2pm, my morning’s accomplishments caught up with me. That welling in my throat, my knees beginning to buckle…the first signs, I’ve come to notice, that a flair-up is coming on. Then the stabbing in my stomach, the closing of my windpipe, the gasping for air. God, then come the tics. The tics make me feel truly crazy.

“Myoclonus,” Dr. Azzolino says. Which, it turns out, is the fancy medical word for the “jerking” diagnosis I had received from those jerks at UCSF a couple days earlier.

Dr. A holds up a long nylon ribbon with red and white stripes. “Follow the red stripes,” he says, as he moves it in a vertical motion like a magician at the fair. Again. And again. My abdomen begins to release its grip. My eyes come into focus and I wonder what they were doing before—I hadn’t realized until that moment that I had been looking at and seeing nothing. I can breathe again.

Then I sway, one hand over my stomach, one stiff by my side and ready to catch myself should I fall off the Bertec machine, a neurological video game of sorts aimed at restoring balance. I stand on a kind of track pad (this isn’t my old Nintendo) and struggle to place my body, represented by little crosshairs, inside of moving targets on a screen. As I shift my weight backward, the punching returns to my gut. Doc says my brain is telling me that I’m falling backward; my body is compensating. How good to know that my mind and limbs are still in conversation, even if things are getting lost in translation.

The ribbon again. Then target practice. Another ribbon, and some cold laser therapy on my cerebellum. And suddenly, like magic, I was good to go, quite literally, for the rest of the day. This is the best I’ve felt in weeks. Though five days without antibiotics may also have something to do with it.

The red-and-white striped ribbon is called an OPK, or optokinetic, tape. It’s quite useful for anyone experiencing this god-awful myoclonus thing. I downloaded an app called FocusBuilder and I do this at home when I feel and episode coming on. I’m down with OPK.

Electric Bugs

Wednesday, May 25

I had a bad episode last night. Because I am now a person who has “episodes.” I worked a full day, camped out on the sofa with endless cups of tea and my feet up, and had better focus than I’ve had in days, never mind this persistent granny hobble. End of day, exhausted. Dinner, no appetite. Dishes, not so much. Netflix, no chill. Michael Pollan’s Cooked; the “Air” episode.

9pm, my chest deflated. As if I’d been poked with a pin, the oxygen drained from my lungs. But no it happened fast, more like I’d been staked in an episode of True Blood but didn’t spontaneously combust. I was sucking for air when a bolt of lightning shot through my left hip, down my leg to my toes, sending my body into flopping spams. “Electric bugs! Electric bugs!” I gasped, screaming to Jake that I was being bitten all over, deep inside my nerves, by vicious electric fucking bugs. How many metaphors can we mix here? Ridiculous.

And then I had to pee. Urgently. Why now?!

I stood up. My legs gave way, ankles folding, knees knocking like a newborn animal taking its first steps. I was helpless to carry myself. I pressed into Jake’s chest hoping his limbs would act as surrogates for mine. I was twitching and jerking uncontrollably. There were convulsions. Stabbing sensations in my gut that sent me doubling forward, eliciting from my mouth, from the dark depths, a sound I didn’t recognize. A moan. Desperation. Death maybe. No. Shouting, no. Sobbing, collapsing, no. Not me. Not my life. Not our marriage. Not my destiny. No no no no.

I heard Jake say “I love you, I’m here,” just before blacking out.