MY TIME WITH LYME.
Today marks the second anniversary of the day I contracted Lyme Disease and Rocky Mountain Spotted Fever.
731 days and countless antibiotics later, I’m ecstatic to report that I feel like myself once again. Getting here has been a long and taxing process, though.
Here’s my story. I share it not to elicit sympathy for past suffering, but to raise awareness, and to hopefully help and inspire those with Lyme who are in misery and don’t know where to turn.
My sixteen-month battle with Lyme Disease started on a triumphant note.
On July 17, 2015, I climbed my first mountain after recovering from a torn Achilles.
After staying in a seedy motel in Oakridge, Oregon, I summited Mt. Yoran, a volcano in the Cascade Range, chronicling my adventure here.
En route to the top, I bushwhacked through countless shrubs and plants that covered the trail, many taller than my head. Standing on Yoran’s highest pinnacle after a sporty class 3 scramble, I surveyed the dramatic 360-degree view, elated to finally have my health back.
From the summit, though, it was all downhill.
Some 24 hours later, after feeling itchy all night, my entire body broke out in giant welts. 198 of them. These welts came with a fever. Chills. Night sweats. Good times.
After doing some Googling, I determined that I had been bitten by bedbugs at the motel. I washed or destroyed everything that could possibly have become infested, and called the Lane County Health Department, who sent an inspector to the motel (whose name shall remain anonymous, since I’ve already inadvertently done enough damage to their business reputation through scathing online reviews which have since been removed).
That same day, as I was washing my hair, a small, bloated insect fell off of my head. Panicking, and still operating under the bedbug paradigm, I pushed it down the drain, and re-washed everything.
A couple days later, the health inspector gave me a call and said that he could find no trace of bedbugs, and no record of the motel ever having had problems with them. Several friends and family members, after looking at the pictures of my rash online, messaged me and said that they’d gotten bedbugs themselves, and that my skin condition looked nothing like it.
I went to the doctor. I was tested for chicken pox, among other conditions. Everything came back negative. Stumped, I proceeded to feel awful for three weeks, until the rash finally, mercifully disappeared.
I thought the saga was over. Nothing could be farther from the truth.
At the end of September, I headed to Colorado to climb North Maroon Peak and Capitol Peak with my dad. Throughout the course of the trip, my neck began to stiffen, and a deep, throbbing cervical spine pain started to occur. I chalked it up to a neck strain due to the backpack I’d been carrying, although I’d never experienced a pain like this before.
In the days that followed my trip, I got several massages, and spent a lot of time stretching and windmilling my neck. The pain and stiffness continued to get worse.
During the first week of October, really strange symptoms began to appear. I began to get insanely painful spot headaches that would come and go arbitrarily. My jaw muscles tightened to the point where it was difficult to open my mouth.
On October 12, all hell broke loose. I woke up disoriented and dizzy, with a thick brain fog that resembled overdosing on sleeping pills and then trying to function. I had blurred vision, and couldn’t focus on anything. My eyes were extremely sensitive to light. I had the most extreme fatigue I’d ever felt in my life, and literally couldn’t get out of bed for days. My eyelids twitched nonstop. The pain in my neck was almost unbearable.
I got a cervical spine MRI, suspecting a nerve issue. The MRI revealed a disk herniation at my C6, which explained some of my symptoms. My doctor gave me a neck brace and told me to take it easy.
I somehow clawed my way through the month of October, barely dragging myself out of bed to go to work as much as I could. I lay in bed sixteen hours a day at times, and my brain was so cloudy that I found it difficult to do the simplest of tasks. For those who knew me, they were baffled by this change in my behavior. I had gone from having seemingly boundless amounts of energy to being practically bedridden in the course of a few short weeks.
Extreme joint pain started to occur towards the end of the month. Often, while walking, my knee would buckle with a stabbing, instantaneous jolt of pain.
My muscles began to twitch. All over my body. Nonstop. Visibly.
My hands became incredibly weak, to the point where I found it nearly impossible to text or hold anything. I played a farewell concert, thinking my days of being able to play guitar were over. I developed balance issues, and would constantly tip over or walk into walls.
More doctors. More tests. A brain MRI. X-rays. Ten separate visits to the phlebotomist for blood work. Nerve conduction studies.
Then, the choking began. I constantly felt as though my throat was closing up, causing me to gasp for air and gag. Doctors stuck a camera up my nose and down my throat. They found nothing.
I was tested for everything under the sun. MS. Lupus. ALS. HIV. Fibromyalgia. Celiac. Extreme allergies. Guillain-Barré. Cancer.
Everything came back negative.
I was even given the ELISA test, a preliminary blood test for Lyme. It, too, came back negative, causing doctors to write off this possibility.
A neurologist diagnosed me with severe depression and told me that all of my symptoms were psychosomatic. I wanted to punch him in the mouth. “Now I’m depressed,” I told him, “because I feel like I’m dying and nobody can figure out what’s going on.” He prescribed me antidepressants and referred me to a colleague.
I tried a naturopath. He was kind, listening patiently to my litany of symptoms. In the end, though, he told me that I had tired nerves and coerced me into buying $200 worth of natural supplements.
Acupunture. Laser therapy. A slew of natural remedies. Nothing helped.
After tests for over 30 different diseases and conditions came back negative, I revisited the possibility of Lyme. I did some research and discovered that the ELISA test I had been given is woefully inadequate; 52% of individuals who test positive for Lyme with the more comprehensive Western blot test are handed a negative result from their ELISA test.
However, my team of Providence doctors continued to operate under the assumption that since Lyme infection is relatively uncommon in Oregon, and one test had come back negative, I didn’t have it. Little did they know that Lyme diagnoses in Oregon have actually skyrocketed by 300% in the last couple of years.
I began speaking with several acquaintances who had battled Lyme, comparing symptoms and treatment plans. One suggested that I send bloodwork to IGeneX, a lab in California reputed to offer the most comprehensive Lyme test available. I did. Insurance, of course, refused to cover this, so I spent upwards of $1500 on blood tests alone. In the end, of course, this was money well spent.
After mailing my blood samples to the lab, I waited. And waited. IGeneX is certainly not acclaimed for its rapid turnaround time. In the interim, I had my uncle prescribe me a month’s worth of doxycycline. I decided to play my own doctor, and since tests had effectively ruled out every other condition, I was almost certain by this point that I had Lyme Disease. I wanted my life back.
I decided to search out-of-network for a Lyme specialist. I discovered that Oregon is simply the worst state to contract Lyme in. Most doctors refuse to accept the fact that Lyme has spread to Oregon, a fact that has been documented by the CDC.
I put in a call to the offices of Dr. Raphael Stricker, a San Francisco Lyme and tick-borne disease specialist. Stricker is arguably the most preeminent Lyme doctor on the West Coast, having served as the vice president of ILADS, the International Lyme And Associated Diseases Society. Due to his notoriety, though, Stricker was booked out three months in advance. I put my name on a waiting list.
Several weeks later, I received a phone call from an unknown San Francisco number. Dr. Stricker had had a cancellation, I was told. Could I be there by the following afternoon?
Yes. Yes I could. I bought a flight immediately and headed down. That same day, my 20-protein-band Western blot Lyme test results came in.
I had Lyme Disease.
Dr. Stricker confirmed this with a clinical diagnosis, almost seven months to the day after I’d contracted the disease. He also ordered additional tests for other tick-borne illnesses. He put me on an indefinite regimen of amoxicillin and clarythromycin. I was to take these powerful antibiotics until my symptoms went away and I tested negative for Lyme.
Once my additional test results came in, the final piece of the puzzle fell into place. I also had Rocky Mountain Spotted Fever. Despite its misleading name, this disease is also carried by ticks, and cases of infection have been reported in all 50 states. Finally, everything became clear. The insect that had fallen out of my head was a tick. I’d gotten bitten on my bushwhack hike of Mt. Yoran. The bedbug bites were actually RMSF’s signature spotted rash. The Lyme bullseye rash had been on my head, under my hair, where I couldn’t see it.
One tick. Two devastating diseases.
My journey down the road to recovery was just beginning, but just merely having answers to this mystery illness and a definite plan of action made all the difference in the world to me. The cloud of my imminent mortality lifted, and I resolved to fight these diseases with everything I had.
From this point onward, Providence, my health insurance provider, refused to cover any of my Lyme treatments, since they were out-of-network and the ELISA test had come back negative. Fortunately, antibiotics are relatively inexpensive, and I was able to have follow-up visits with Dr. Stricker via Skype, and continued to mail my bloodwork to IGeneX.
In retrospect, my initial one-month course of doxycycline may have saved my life. Rocky Mountain Spotted Fever can attack the heart and prove fatal if left untreated.
After three months of my second course of antibiotics, I had thoroughly wrecked my GI tract, but my symptoms began to abate. The brain fog and fatigue lifted. My nerve, joint and muscle issues took much longer to resolve, but after nine months, I felt like myself again, save a few sporadic yet recurring bouts with choking and hand weakness. I would never again take for granted simple things like the ability to get out of bed, use a phone, or walk.
Unless you or someone you know has been afflicted with it, chances are you don’t know very much about Lyme Disease.
Throughout the course of my battle with diagnosing and then treating the disease, I’ve been informed that Lyme is spread by rats, and asked if it can be sexually transmitted. I’ve been told that it only exists in the northeastern part of the United States, and told by physicians that my symptoms were all in my head.
All the while, I felt like I was going to die, and some days wished that I would.
I’d been through concussions and a torn Achilles, and had bitten my tongue off and detached a nostril in a mountain biking accident. None of these injuries even held a candle to the suffering I experienced at the hands of Lyme.
First and foremost, Lyme Disease is a bacterial illness. Known as the Great Imitator because of its ability to mimic a host of other diseases, Lyme is often hard to diagnose. The Lyme bacterium, Borrelia burgdorferi, is a spirochete that is notoriously difficult to eradicate. However, it’s still a bacterium, and therefore must be treated with antibiotics. If the infection is caught early, a simple 2-week course of antibiotics will typically suffice; however, in my case, the disease had been allowed to progress for so long that I had to endure a much longer course.
After my diagnosis, I was contacted by a host of individuals who had either had Lyme themselves or known someone who was afflicted. These people suggested a slew of alternative remedies, everything from bee venom to stevia to turmeric. I tried everything, with the exception of getting stung by a swarm of bees. My theory was this: obviously, antibiotics were the primary weapon, but I wanted to do everything I could to give my body a fighting chance. I started eating organic. I juiced literally pounds of fruits and veggies daily. I downed probiotics like they were going out of style.
In the end, it all paid off. I am now Lyme-free, and I thank God daily for that fact.
Are you or a loved one suffering from Lyme? Or, perhaps you think you have been infected and are finding it difficult to obtain a diagnosis? Are you struggling with a healthcare system that’s woefully inadequate?
Here’s my advice: be your own advocate. Don’t take no for an answer. Fight for your right to proper healthcare. And, once you’ve been diagnosed with Lyme, don’t quit. Don’t lose hope. Take your antibiotics. Listen to your doctor. Things. Will. Get. Better.
Also, spread the word. The CDC estimates that some 30,000 new cases of Lyme are reported annually in the United States alone, and yet a few hundred cases of Zika get all the press. Lyme Disease is a debilitating, sometimes fatal illness that has affected hundreds of thousands in the United States alone, but it’s a disease with a cure.
Wear bug spray and long pants. Check for ticks. Get tested at the first sign of symptoms.
My time with Lyme is finally over. Yours could be just beginning.
Don’t give up.