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One of the most memorable events in Serena’s life after she entered adulthood began by sliding down a set of stairs on a mattress. Children do this for fun, sure, but Serena was 18 — an adult — and by no means was she having fun. She was trying to see a doctor.
After getting the mattress downstairs with her nearly motionless body atop, Serena’s parents transferred her to a wheelchair. From there they wheeled her outside to an RV waiting to take the severely ill young woman from Vancouver, British Columbia to see a new doctor in California.
Following a referral from her general practitioner, Serena decided to make an appointment to see Dr. Steven Harris, a physician specializing in Lyme disease located in the San Francisco Bay Area.
But first Serena had to, without walking, ascend the steps to get inside the RV. She sat on each small step and, with her parents lifting her at the waist, painfully ascended the steps one at a time, gingerly lifting her hips to the next step until she eventually made it to the hard floor of the RV, which Serena struggled to crawl along. She finally made it to the back of the RV and collapsed into the vehicle’s built-in bed.
Because Serena’s condition — a sinister concoction of Lyme disease, myalgic encephalomyelitis (chronic fatigue syndrome), and other associated conditions — made her extremely photophobic and sensitive to sound, she was unable to travel by plane or regular automobile.
Knowing the delicacy of her condition, for months Serena thought of possible ways to travel to see the new doctor. Serena heard of a woman who was just as sick and lived not far from her In British Columbia. The woman had to be driven in an RV to a special Lyme disease clinic in Kansas.
Serena decided to attempt her own version of the woman’s journey and that traveling in an RV was her best shot. Seeing the doctor in person was, after all, the only way to get the treatment she needed.
“I just figured, this is what I need to do. This is what I want to do . . . And this is just how I’m gonna have to do it,” Serena confessed in a video she posted on YouTube several months after the trip.
Serena asked her parents to rent the RV, which cost $2,000, plus another $600 for gas. But the money was worth it; the spaciousness and amendities of the vehicle made traveling manageable for her. But still, the trip was far from a vacation.
Serena spent nearly the entire time in bed. She remained mostly horizontal because she suffered from postural orthostatic tachycardia syndrome (POTS), which makes standing or even sitting up extremely difficult.
Serena’s mom slept on the RV’s pull-out futon and her father in a small bed above the driver’s cab.
The RV may have had the essential amenities for a severely ill person to travel, but it was not conducive to good sleep, especially with three adults sleeping within a few feet of each other. If one of Serena’s parents woke up and moved around in the RV, its weight bounced around on its tires and shook everyone else awake.
Crossing The Golden Gate
The only time Serena left bed was when the RV crossed the Golden Gate Bridge in San Francisco. As the large vehicle crossed the historic landmark, Serena asked her father to pick her up out of bed and carry her to the front of the vehicle. There he positioned her on a wedge pillow so her upper body was at a 30-degree angle (the only elevation she could tolerate for any prolonged amount of time).
Other than taking in California’s majestic Golden Gate, Serena stayed in bed the whole trip. She didn’t even get up to go to the bathroom. She couldn’t. Instead she used a portable commode in her bed and washed her hands in a bucket of water.
Serena also maintained her hygiene by using baby wipes, more buckets of water, and hand sanitizer to keep clean and free of body odor.
Before making it to San Francisco, Serena and her parents crossed the US/Canada border in the RV without much delay, but this was in late-2015 when, although President Trump had yet to take office, his plans to tighten border security were floating around the political landscape. This concerned Serena. Regardless Serena remained undeterred in her mission to seek proper medical care.
After more than 1,000 miles navigating along the Pacific Coast, with a couple overnight stays in $100-a-night campgrounds along the way, the RV arrived at Harris’ office. Serena was eventually brought into a room. There she was laid on its examination table with two types of noise-canceling ear protection on. For her eyes she wore sunglasses and a hat to block out natural and artificial light.
Unable to see or hear, Serena had to trust that her parents would accurately describe her condition to Dr. Harris’ physician assistant. Her parents described her symptoms as extreme pain and fatigue, as well as dizziness, brain fog, and fitful sleep.
Serena’s doctor back in Vancouver had given Dr. Harris a heads up about how sick she was and how far she would be traveling so he decided to pop in and introduce himself — something he, nor most doctors with physician assistants typically do on a patient’s first appointment. But Serena would be returning home shortly after the appointment and it remained uncertain if she would be able to make such a lengthy and complicated trip again.
“We’re going to get you better. I promise,” the doctor told Serena.
What may have been a cliché coming from a doctor who likely said something similar to all his patients, was heartfelt to Serena.
“I felt he was genuine in his concern,” Serena said recalling her first meeting with the doctor.
Next Serena had her blood drawn for numerous lab tests. Then she was given an antibiotic injection, which her father watched closely because in the following months he would be tasked with giving her the injections back home in Vancouver.
After more than three hours in the doctor’s office, Serena made it back to the RV. She was done — both accomplished and exhausted. She didn’t speak more than a few whispers for the rest of the day, only to ask for food. Then she developed an intense migraine, which only worsened when her family stopped at a campsite for the night and the people next to them sent campfire smoke wafting into the RV.
Her migraine eventually went away and she finally returned home. She soon started the treatment protocol from Dr. Harris — a hodgepodge of traditional methods like antibiotics and alternative treatments like herbal tinctures.
Specifically, Serena was prescribed Nystatin and Diflucan, two antifungal medications. The antibiotics she was given were for her small intestinal bacterial overgrowth (SIBO). She was also given anti-parasitic and anti-malarial medications to treat babesia, a parasite that showed up in her blood work. Most recently she requested a more holistic approach to her treatment focusing on using herbs and detoxing her body, although she is sticking with the anti-parasitic medication and has added low-dose naltrexone (LDN), a medication commonly used for drug and alcohol addiction in higher doses, but is also used in low doses as an anti-inflammatory agent to treat some chronic illnesses.
Now, nearly two years since her trip to California, Serena’s health has improved — she can walk again, albeit gingerly. But her condition continues to fluctuate. And while she is grateful for her improvements, she says they are less than her doctors expected and perhaps even promised her. This, as many chronically ill patients know, is the curse of any truly compassionate doctor — the promise of something improbable, if not entirely impossible, in order to lift the patient’s spirits.
While Serena would like to maintain her treatment from Dr. Harris, and she most likely will, she is unsure whether the gradual improvements to her health have been because of the doctor’s aggressive treatments or whether it was simply a matter of time before she felt better — her body eventually healing on its own.
Serena has no plans to make a return trip to California anytime soon. Serena is worried that the additional treatments Dr. Harris wants her to try will leave her too ill to return home. In such case she would be stuck as a tourist in a country that as of late hasn’t been kind to foreigners.
Mostly Serena and her family don’t want to make the trip because of the political tension in the United States — the protest-related violence and threat of nuclear war are major deterrents, and understandably so. For now, Serena is content with her improvements and the treatment protocol she continues to take with Dr. Harris’ prescriptions.
But just as there’s no way of knowing whether the treatments have worked, there’s no way of knowing what the passing of time will hold for Serena.
Serena (real first name) asked that I omit from this post her last name and any photos that might reveal her identity.
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