This might have been the day I got Lyme Disease. Or maybe it wasn’t.
The perils of Lyme Disease are so complex, so numerous and so diverse it is difficult to even begin to consider where to start. I’ve been asked many times to write about my experience, and have even been asked to go on camera, but I have been reluctant until now. Why now? No one reason specifically. I am feeling slightly better. I did change this site to include this tab, but most importantly I still hear so much misinformation coming from the government and medical communities that I feel there is a strong need to voice what is REALLY happening. Lyme isn’t rare, non-dangerous or easily treatable, no matter how many times the medical community casually tosses this opinion in their press releases or official statements. Considered by many to be one of the most misdiagnosed diseases in the world, the number of new cases annually is possibly far higher than we have been led to believe. I’ve had all kinds of illness in my life, including things like meningitis and Epstein-Barr, and I can tell you that Lyme Disease is infinitely worse. If I’m awake I’m dealing with it. There was simply life before getting Lyme, and the life I’m living now, where each day is a mystery of symptoms and oddities that impact every breath, every stride and every decision. The Lyme Community is vast, and now stretches around the globe, even while certain governments still deny the existence of the bacteria or the idea that Chronic Lyme is real and not a figment of someone’s diseased mind. I don’t think we faked the Apollo moon landings. I don’t think Kennedy was killed by some far reaching conspiracy. I’ve never seen Bigfoot, and I’ve spent years in the woods, but with Lyme, all I know now is that it sure seems like someone has something to hide. Let’s hope, at some point, the truth emerges. I fear that at some point in the near future the bacteria will morph and become something that kills quickly and without prejudice. Lyme is the tip of the iceberg with tick-borne illness. We’ve let it go this long. What’s next?
In 2014 I traveled to Australia for work. At the end of three whirlwind weeks of business I flew to Perth and connected with two friends, photographers, and then proceeded to travel thousands of miles through The Outback, camping, exploring and making pictures. After returning to California, exhausted, I went back to work and kept up with my lifestyle if you will. Cycling, hiking, paddling, etc. I drove to Big Bear, did a fifty mile bike race, completed some mountain hikes and even attended Paddlefest where I got roped into a Crossfit contest of sorts that just about killed me. Shortly after I traveled to New Mexico, where I live part-time, and also continued with my lifestyle. Cycling and many hikes, much time in the woods. My next move was on to New England.(This is where your skin begins to crawl.) I not only went to New England, Massachusetts, New Hampshire and Maine, but I also went INTO THE WOODS.(Wouldn’t do this now.) I wore long sleeves and long pants tucked in my socks. Lots of bug spray, and everyday my wife and I did “tick inspection.” Nothing. Nada. Clean.
Exploring The Outback, 2014
I’d been in New England for approximately two days when I felt a pain in my jaw. A strange, grinding feeling in my TMJ joint. It wasn’t painful, just odd. I also began to feel strange mentally. Foggy. Not entirely off but enough for it to begin to really bother me. I also started to feel tired, but not like a normal tired. More of a DNA level tired, which at first reminded me of Epstein-Barr. I didn’t tell anyone, just dealt. I ran the standard potential causes through my mind but didn’t think much of it.
No tick bite. No joint pain. No rash.
A few weeks after returning home I wasn’t getting any better. I was sleeping twelve hours a night then sleeping much of the day. I was still in denial and tried to maintain my physical life. On a Saturday morning ride I was so mentally foggy I “came to” on my bike, five miles from my house, riding with other people, but had no idea I was actually on a bicycle. I didn’t know where I was, or who I was with or how I got there. I was officially freaked out.
I called my doctor, who is a friend and someone I really like. Infectious disease is not his specialty, and many of the doctors in California still believe you can’t get Lyme in the state, so testing for Lyme was part of our original set of tests, but I was yet unfamiliar with how difficult it is to test for Lyme, and how a basic blood culture will almost always come back negative. I met with the doctor and we did a full line of tests. Everything was normal. I got worse.
My primary doctor sent me to a neurologist.
Again we dove into a variety of tests from brain scans to nerve damage tests. I also inquired about testing for Lyme, which was added to our list, but again only as a basic blood culture. The tests came back negative. All of them. And then something strange happened. I was diagnosed with something that should have shown up on the tests. “But you tested for that,” I said. “Okay,” the doctor said. “You don’t have that, you have THIS.” Again it was something that should have shown up on the tests, and again I said “Wait, you tested for that, let me see the results.” Again he said “Okay, you don’t have that you have THIS,” and named ANOTHER disease that would have shown up on the tests. Now I was confused but also starting to get a little ticked off(pun alert). In a matter of minutes he diagnosed me, or misdiagnosed me, with five different diseases, back to back to back. I was almost speechless. And then I asked about Lyme. And this is when things took a turn. He stood up from his desk, put his hands in the air and said “I will NOT talk to you about Lyme.” It was then made clear to me that it would best if I left their office. His assistant apologized to me but did nothing else.
About this same time my wife went on a business trip to New York and while there ran into a photographer friend. He asked about me, she told him I was suffering from some strange illness and he asked about the symptoms. Within minutes he said “He’s got Lyme and he needs to get tested NOW.” Suddenly I had a fire under me, an target disease to aim for, but there was still the question of treatment. I switched insurances and went to a new doctor. The new insurance was a massive medical organization here in California. I took the first appointment, sat down with my doctor and said “Can I see someone in infectious disease?” “Sure,” she said. “Why do you want to do that?” she asked. “I want to talk to someone about Lyme.” When I said this she immediately flinched, and the look on her face went from happy to concerned. “Aahhhhh, okay,” she said and began filling out a form, but within a few seconds she stopped, looked at me and said “I can’t do it.” “Why not?” I asked. “The organization sent all us doctors a letter saying that we shouldn’t talk about or diagnose Lyme, and if someone comes in saying they have Lyme they have to prove to us they have it,” she said. “How do they prove it?” I asked. “With a basic blood test,” she answered. “You can’t test for Lyme with a basic blood test,” I said. “You’re exactly right,” she said.
I sat for a few seconds taking this in and then said “Oh, I know what they are doing.” “They are blowing me off because they don’t want to deal with Lyme.” “You are exactly right,” she said. Later that night this same doctor called me twice, at home. “I’m so sorry,” she said. “I can’t believe they are doing this to you.” I went online and began madly researching Lyme, and what came back at me was something out of a bad dream. My situation, and even stranger things, being repeated countrywide, and in some cases, other parts of the world. Denial, evasion, misinformation, misdiagnosis. I began to ask friends, family, anyone I could find about Lyme and it seemed that everyone had a story. A friend with Lyme, a family member, an entire family, an entire neighborhood. New England was the epicenter, but people rang in with stories from Japan, Canada, Germany, France, Denmark, The Netherlands, Argentina, Alaska, and yes, many, many stories from Australia, New Mexico, California and almost every point in between. This was NOT a rare disease and it certainly wasn’t limited to New England. I also started to learn that refusal to treat Lyme was not limited to one medical organization. It was widespread.
Through an online organization I found an LLMD, Lyme Literate Medical Doctor, in San Diego and made a call. “We are booked about six-months out,” I was told. By this time I knew enough to realize that the sooner you start treatment the better chances you have, although there is no cure for Lyme. “I’m driving to your office tomorrow morning, and I’m not leaving until you see me,” I said. “No, don’t do that,” the receptionist said. “I’m coming,” I said. “Okay, okay, fine, he’ll try to work you in,” she said. My first meeting with the doctor was TWO FULL HOURS. I answered page after page of very specific questions and also gave blood for a test called The Western Blot, which isn’t without it’s detractors, but still remains one of the better ways of testing for Lyme. This test is only administered by two labs in the US, at least that was what I was told at the time. Two weeks later the results came back. Positive for Lyme.
I began triple antibiotic treatment right away, and remained on them for two full years, something I wouldn’t do again. Today I would do an antibiotic IV and would pulse the treatments on and off. Lyme has incredible amounts of DNA and is one of the smartest bacterias around. Recent reports say that nearly half of all new Lyme patients don’t respond to antibiotics, and in some cases are made worse by antibiotic treatment. Lyme is VERY smart, VERY aggressive and VERY elusive, and within twenty four hours of being infected the bacteria can live in three forms in the human body. Cell, cell wall and cyst. Getting multiple antibiotic treatment for Lyme still isn’t easy in some places, and was only recently made kosher by Cuomo in New York where Lyme has been raging for decades.
Over the subsequent months I continued my treatment and even did hyperbaric oxygen treatments, at Lyme depth, where I spent an hour and forty minutes a day in a hyperbaric oxygen chamber. It was all I could do to not freak out inside the machine. My body would burst into pools of sweat, in seconds, and my mind raced about what would happen if an earthquake hit while I’m sitting in a pure oxygen state. BOOM.
My life was turned inside out. I couldn’t do anything other than get through a work day and even that was the limit of my ability. Right before I was diagnosed I had purchased a new bike and this new beauty sat in my library for almost a year before I could touch it, let alone ride it. On top of it all I was working in San Francisco and started peeing blood. Never a fun thing. I was diagnosed with a kidney stone, something I’d had before, but this one was in a position where they needed to go up and get it. And yes, that is exactly what it means. Think medieval times. As I as being prepped to be put under a nurse very sheepishly creeped into my room said “Hey, I noticed you put Lyme Disease on your forms.” “Yes, sure,” I said. “Don’t tell anyone you have Lyme,” she said. “If they find out they will ask you to leave the facility.” “What?” I asked shocked. “I don’t know why it is, and I’ve never seen anything like it,” she added. This wasn’t the only strange event that transpired, and the more people that found out I had Lyme the more stories I began to encounter. Denial, refusal of treatment, refusal to diagnose, etc.
I also began to learn the incredible range of Lyme itself. The hundreds of symptoms, and the range of infection, treatments and relative ease at which some people were able to achieve asymptomatic status and others battled for years with no success. Strain type, where someone was bitten, how quickly was the tick removed, how quickly was treatment started, the age and shape of the person involved, the immune system of the person involved, the co-infections that were acquired at the time of infection(A very common thing.) All of these things were critical, and each person’s Lyme story was an unique as a fingerprint.
I also began to learn that there were a lot of strange stories circulating around Lyme, some that were out of right field, or left field, or outer space. And many people who knew someone who knew someone with Lyme had stories like “Oh ya, my friend had it and she ate banana peels and it went away.” “Really, did they get tested for Lyme?” “No, but they were pretty sure they had it.” I realized that these stories were making things worse. With the difficulty of being tested and the misdiagnosis the playing field of Lyme was a minefield.
I continued with my treatments. Meds, oxygen, infrared sauna, anything I could try and do I did. ALL OUT OF MY OWN EXPENSE. None of the Lyme docs took insurance. And none of the medical doctors I spoke to wanted to deal with Lyme. Most were just ignorant, knew nothing about Lyme outside of what mainstream medicine said. “Oh you can’t get Lyme in California, you must have something else.” Within months I knew far more about Lyme than the traditional medical people I was speaking to.
I was interviewing a photographer in downtown Los Angeles and his assistant said “Oh, I have Lyme too.” “And my brother has it and our other roommate and my dog.” “We all got it in the Sacramento foothills.” I ventured back to New Mexico and was hanging out with another artist and his assistant said “My two best friends have Lyme.” Another friend in Santa Fe approached me and said “My mom had it and it went untreated for so long it ultimately led to her death.” I also began to hear the names of celebrities and politicians who had Lyme. I went to the beach in Newport with a friend from New Mexico. “I had Lyme too,” he said. During a visit to the Lyme doc I talked to a mother and her two boys, all with Lyme, who moved from New Jersey to San Diego “In hope we don’t get reinfected,” she said. “We lived in a gated community in New Jersey with 160 houses and every house has at least one Lyme patient.”
And what do you hear about this in the media, from the medical community? Very little. Downplay.
But what has begun to emerge are stories about new bacterias, new tick-borne illnesses that are killing and killing quickly. Kansas, Oklahoma. They get a little play and then they disappear. The nature preserve near my house in Newport suddenly has tick warning signs posted at trailheads. Then, just as quickly, they disappear. A friend does a shoot in Banning Ranch and said “We were covered with ticks.” Another friend goes hiking at Joshua Tree and picks up a tick. Another friend in New England goes hiking, gets a tick and gets Lyme. A friend in Boston calls, “My two best friends have it now and so does my mother-in-law.” “It’s so bad now at the hospital that it’s the first thing they test you for.” Another friend in New Mexico tells me “I left New York because of Lyme, all of my friends were getting it.” I attend a running training camp of sorts and talk to a Marine who lost both legs in Afghanistan. “A lot of guys got Lyme while we were training but we were told never to talk about it.”
I know what you are thinking. Why? This doesn’t make sense.
I’ve been asked the “Why?” question for the past three years and I have no concrete answer. I know that the insurance companies want nothing to do with Lyme. They want patients through an office in fifteen minute intervals, so Lyme doesn’t fit the mold. Big pharma companies also don’t want Lyme diagnosed because they don’t currently have a profit center tied to the disease. No way to maximize profit. Yet. Rumor has it a new vaccine is on the way, and a vaccine did exist in places like Germany, back in the 1990s, but allegedly it is no more. This situation also exists because of us, the public. We are passive and we don’t care. I don’t mean people are evil, but we are overly busy and this doesn’t lend itself to getting involved. If you only listen to the mainstream media, the medical community press releases you would think Lyme is no issue at all. The ONLY thing that spiked calls in my direction was a realty TV star getting Lyme. Suddenly it was real. People are busy, have jobs, children, stresses and if you don’t have Lyme you have NO IDEA who bad it is. I’ve never even explained to my wife or family just how bad it is because I don’t think they want to hear it. I probably wouldn’t either. I consider Lyme my second full-time job. I work, am a husband, and then in the background I have another full-time posting that never ends.
Okay, a few things that have helped. Diet. I eat no corn, alcohol(You can eat it if you get creative.), gluten, dairy, sugar or caffeine(I cheat with Mate´). This was an easy choice and I instantly felt an improvement. Now, this could have been because these items all inflame the body. Either way, it’s a lifetime goal now. Yoga. I do thirty minutes of yoga everyday. A routine that I developed, and a routine I will be sharing here on Shifter. This is both a mental and physical benefit. Not my first dance with yoga, but this core exercise is the most important thing I do all day. Exercise. I wasn’t able to do anything for a long time, but now I am back to running, hiking, paddling and riding. Mostly riding. Anywhere from 10-70 mile rides. At first I was able to ride but would then crash hard for several days. Now I can string back-to-back rides and don’t crash, so things are looking okay at this point. I still can’t press myself like I did before, but at least I’m sweating it out. Sleep. Oh baby do I need the sleep. Ten hours is best, but eight or nine is standard now. Looking back I’m fairly certain I lived sleep deprived or many years. Sleep now is SO FANTASTIC. I’m boring. I’ll tell you right now. I rarely go out, don’t socialize much anymore, outside of work, and just can’t deal with the noise of our culture. And finally, CBD oil. For those who don’t know, this is the medicinal side of the marijuana plant, which also happens to be a anti-bacterial, anti-inflammatory, which I felt IMMEDIATE benefit from within five minutes of using it the first time. Now I use it three times a day. There are a lot of lesser CBD options out there, but 20:1 pure CBD oil in a vaporizer is what I use. All of these things will be further flushed out on this site, over time. I will also detail the supplements I take and some of my favorite foods for anywhere, anytime. Also, this might seem trivial but I don’t believe it to be. I deleted my social media accounts three years ago. I can’t imagine dealing with Lyme Brain(intense fogginess) and being on social media at the same time. Heck, even being on the internet and having Lyme Brain is a nightmare. Just delete them. Cut them out. You will be far happier. I also read a lot and I try to meditate, which is a slippery slope because I know that mentioning that word will turn certain people off, but don’t think of meditation in a classic sense, unless you want. Think about it as simply clearing your mind, daily. Could be while you are in an elevator, or sitting in traffic or even sitting while having your morning coffee. This is like hitting restart on your brain. More on all of this later.
This is my story and I’m sticking to it.
Endeavor to persevere.