"With everything that has happened to you, you can either feel sorry for yourself
or treat what has happened as a gift. Everything is either an opportunity to grow
or an obstacle to keep you from growing. You get to choose"
- Dr. Wayne W. Dyer
The mysterious, convoluted, confusing and oddly controversial story of Lyme disease has all of the makings of a major Hollywood suspense thriller - and I would not be at all surprised if it actually does play out on the big screen one day. It's a good story, with plenty of twists and turns, intrigue, drama, emotional turmoil and often polarizing controversy. Add to that a heaping dose of human pain and suffering and you've got the recipe for a major motion picture blockbuster.
Unfortunately, for those of us living with this hideous disease day in and day out, the story is nothing close to fictional. It's our reality. Our new normal. And the reality is anything but glamorous.
History of Lyme Disease
Excerpt from Bay Area Lyme Foundation web site:
"Ticks and Lyme disease have been around for thousands of years. In fact, a recent autopsy on a 5,300-year old mummy indicated the presence of the bacteria which causes Lyme disease. A German physician, Alfred Buchwald, first described the chronic skin rash, or erythema migrans, of what is now known to be Lyme disease more than 130 years ago. However, Lyme disease was only recognized in the United States in the 1960's and 1970's And the bacteria that causes it - Borrelia burgdorferi, wasn't officially classified until 1981.
The 1970's
In the early 1970's, a group of children and adults in Lyme, Connecticut, and the surrounding areas were suffering from some puzzling and debilitating health issues. Their symptoms included swollen knees, paralysis, skin rashes, headaches, and severe chronic fatigue. Visits with doctors and hospital stays had become all too common.
These families were left undiagnosed and untreated for years. If it wasn't for the persistence of two mothers from the group in Connecticut, Lyme disease might still be little-known even today. These patient advocates began to take notes, conduct their own research, and contact scientists.
The medical establishment began to study the group's symptoms and looked for several possible causes. Was it germs in the air or water? The children had reported skin rashes, followed very quickly by arthritic conditions. And they had all recalled being bitten by a tick in the region of Lyme, Connecticut.
Finally, by the mid-1970's, researchers began describing the signs and symptoms of the new disease. They called it Lyme, but they still didn't know what caused it.
The 1980's
In 1981, a scientist who was studying Rocky Mountain Spotted Fever (also caused by a tick bite) began to study Lyme disease. This scientist, Willy Burgdorfer, found the connection between the deer tick and the disease. He discovered that a bacterium called a spirochete, carried by ticks, was causing Lyme. The medical community honored Dr. Burgdorfer's discovery in 1982 by naming the spirochete Borrelia burgdorferi.
With extensive backgrounds on Lyme patients and the scientific discoveries that ensued, doctors began to use several antibiotics to treat the disease. This treatment is currently accepted by the medical profession and has been largely successful, especially for those with early-stage Lyme disease. However, there continues to be heavy debate on the long-term use of antibiotics for Lyme that has progressed or appears resistant to a short course of antibiotics.
The 2000's
Since the 1980's, reports of Lyme disease have increased dramatically to the point that the disease has become an important public health problem in many areas of the Untied States.
In 2012, Lyme disease was included in the top ten notifiable diseases by the Centers for Disease Control and Prevention (CDC).
Today
Lyme disease is one of the fastest-growing vector-borne infections in the United States. The CDC estimates that there are 300,000 new cases each year here in the US.
While it was primarily an East Coast phenomenon in the beginning, it has since been reported in all states except Hawaii. And diagnostic tools are still unreliable - as of yet there is no definitive cure for those with late-stage Lyme disease."
My Story
I was born in 1971 and grew up in the Bay Area , Portola Valley, CA, until I was 14 years old. My father was a TWA airline pilot and was transferred to the East Coast when I was in 8th grade. We moved to Darien, Connecticut in 1984, the summer before I entered my freshman year of high school. I lived there for four years and during that time, I remember getting at least two tick bites, one of which I received in 1989 while working as a lifeguard at a beach on the Long Island Sound the summer after my senior year of high school. I remember getting the bulls-eye shaped rash but I was never treated for it with antibiotics. I was not even aware that Lyme disease existed at that point and I never sought medical attention. The rash went away on it's own and I didn't think much about it. Interestingly, Darien is 68.9 miles from Lyme, a driving distance of a little over an hour.
In August of that same year, I began my freshman year at the University of Colorado, Boulder. The year started out great - I loved Boulder, immediately made some great friends, and joined a sorority. But soon I realized something was not right. I was tired all the time and although I had always been a straight-A student, I was struggling to keep up with my studies. I was finally diagnosed with mononucleosis in the Spring but by that point I had pretty much failed out of school. My parents were upset, disappointed and baffled. It was devastating.
In retrospect, I now believe that the mononucleosis I was diagnosed with was actually Lyme disease. I never felt the same after that and I have suffered from chronic health problems, including chronic fatigue, endometriosis, fertility problems, chronic debilitating back pain, with numbness and tingling in my legs and feet, joint pain, constant headaches, fog brain, chronic yeast infections, issues with my skin and hair...the list goes on and on) for the past 25+ years. Looking back, I had all of the symptoms of Chronic Lyme disease but I had no idea that's what was making me so sick.
Since finally receiving my diagnosis over twelve months ago, I have learned so much - much more than I had learned in all of my previous 44 years combined. And yet, I feel as if I have only just scratched the surface. I still have so many unanswered questions - both about myself and about Lyme disease. I'm at an intersection of the two right now and sometimes its hard to differentiate between them because they are so intertwined.
Oddly enough, I've learned to look at Lyme as more as an unwelcome guest who, although it has most definitely overstayed its welcome, is not necessarily the mortal enemy I once thought it to be. We've been together a very long time, Lyme and I, and I've decided that it must be in my life for an important reason. I no longer fear Lyme as I once did - I view it more with a sort of observational curiosity, asking myself on a daily basis this simple question: What is Lyme disease here to teach me?
My journey is far from over, but here are some things I have learned about myself and about Lyme disease that you may not know...
1. The struggle is real.
2. I am stronger than I ever imagined. Way stronger. Lyme disease is not for the faint of heart - it's a beast in every sense of the word. It requires every ounce of strength, fortitude, determination, perseverance, and faith one can muster. And then it demands more.
3. Chronic Lyme & Co. is extremely controversial. Talking about it tends to alienate others, including close friends and family who often don't believe you and tend to gossip about you behind your back. I've learned to accept this fact and not let it get to me.
4. People can say things about me, they can think things about me, they can even believe things about me - but that doesn't make those things true. Never, ever again will I allow other people's attempts to define me, including doctors, influence how I feel about myself or what I know to be true.
5. Some people are unkind because they are ignorant; others are unkind because they choose to be ignorant. Either way, it's not my problem.
6. Living my life allowing any credence whatsoever to what other people think of me is a waste of my time and energy and will prevent me from living a life of full of purpose and authenticity. Never again. I intend to live my life fearlessly and without regret. I am committed to living a life without fear of any kind, including fear of criticism, judgment, or worry about my reputation. What other people think of me is none of my business.
7. Compassion and kindness are everything. Every person I meet is on a journey all their own, one that I know nothing about, even though I may think I do. That applies to those close to me as well as to strangers - things are not always as they appear to be. So who am I to judge?
8. There is such a thing as "disease-ism". Some diseases, like cancer for example, are deemed worthy by society of sympathy, compassion, research and fundraising. Others, like HIV, chronic autoimmune disorders (aka "invisible diseases), addiction, mental illness and many others, elicit a very clear lack of empathy and understanding from the outside world. And then there's Lyme disease, which is in a category all its own. The mere mention of the word "Lyme" makes people behave so oddly that it's hard to wrap one's brain around it. It's just downright bizarre. I still don't pretend to understand it - but I have learned to deal with it because I've come to realize that it's completely out of my control.
10. I also realize that I must be willing to accept setbacks because with Lyme, there are always setbacks. Always. But I must not let them deter me from my ultimate goal. This is critical.
11. Lyme is one cunning son of a gun. It has a tendency to trick you into a false sense of complacently, making you think you are making progress when really it's just hiding, lying in wait, undetectable by your immune system and ready to pounce when you are least expecting it.
12. If you ask me how I'm feeling today, I will tell you honestly but my answer might be drastically different tomorrow. Living with Lyme is a roller coaster ride - I never know how I'm going to be feeling from one day to the next, which is why I plan basically nothing.
13. I may smile and act like I am feeling okay but in reality I feel like crap most of the time. And I know I look like crap too so don't feel bad if that's what you are thinking. Which leads me to #14...
14. All vanity goes out the window when you have Lyme. In the past, I've always, for the most part, felt confident in my physical appearance and could sometimes be quite vain. No more. Lyme ain't pretty and neither are you when you are battling it. There is no way around it and frankly, it's been very humbling. My skin is a mess from the toxin release, my eyebrows fell out and are gone completely, and I'm suffering from massive fluid retention and systemic inflammation because as my body kills off thousands of pathogens and releases endotoxins into my bloodstream (called herxing), not only does it cause me to experience terrible, worsening symptoms but my lymphatic system gets completely overloaded and cannot eliminate the toxins fast enough. I'm carrying around 30 extra pounds of fluid - I look and feel super bloated and none of my clothes fit. It's beyond uncomfortable. Add to that the fact that the idea putting on make-up seems almost equivalent to running a marathon when you can barely muster enough energy to drag yourself out of bed and shower in the morning - well, you can see that it's not a pretty picture. Not by a long shot. There are times when I just want to hide in my house and avoid social situations...but I've learned to accept this as part of the healing process and it's a price I will gladly pay in return for my health. Still, I do look forward to the day when I look and feel like myself again. Until then, onward.
15. I welcome compassion but please don't pity me - it just makes me feel worse. And please, please don't point out how much my family has suffered as a result of my illness. Nobody- nobody - is more aware of this than me and pointing it out also makes me feel worse.
16. There are literally hundreds, maybe thousands, of treatments out there for Chronic Lyme disease. They vary in a multitude of ways but all have one thing in common: they will make you worse, much worse, before you start to see any improvement. With some treatments, like the Rife machine for example, you many only feel really down and out for a few days and then see marked improvement after that but you will definitely feel worse at first. And it's cumulative - so if you keep using the Rife every day without somehow addressing the toxin build-up, you will have more bad days eventually. Lyme disease is a marathon, not a sprint. It can take months, even years to feel better, depending on how long you've had it, which co-infections you have, and your physical make-up, including any other underlying health issues. It's just the nature of the disease - no way around it. Like I said, it's a beast.
17. Everyone's an expert. People hear little snippets here and there from "respected" sources like Google, the news media, mainstream medical doctors or even just some random person and think they have it all figured out. I will tell you something with utmost certainty - any person who has been living with Lyme for any significant amount of time most definitely knows more than any of those sources combined. I promise you that's true. I'd be willing to bet my life on it. You would probably be surprised at the level of resourcefulness, determination and collaboration that exists in the Lyme community, created out of sheer necessity and desperation due to lack of any other options. In order to survive, you must become an expert. Period.
18. Lyme & Co. is very complicated and affects every individual differently. Additionally, a treatment that works for one person may not work for another. It's imperative that you become an expert on how Lyme affects you specifically taking into account everything from dental issues, implants of any kind, medications, previous surgeries and underlying health issues to how long it's been there. Everything is important and even the littlest thing may be playing a much bigger role in your symptoms and treatment success than you realize.
19. I am an activist when it comes to Lyme disease, admittedly a reluctant one, but an activist nonetheless. People who have known me for a long time would agree that this was never a path I would have chosen for myself - but for whatever reason it seems to have chosen me. If I have to be a poster child for Lyme and subject myself to ridicule, judgment and criticism then so be it - I've made peace with it. Bring it on! If I can help or encourage just one person, it will be worth it to me.
20. "Groupthink" is defined as: 'A psychological phenomenon that occurs within a group of people, in which the desire for harmony or conformity in the group results in an irrational or dysfuncional decision-making outcome. Group members try to minimize conflict and reach a consensus decision without critical evaluation of alternative viewpoints by actively suppressing dissenting viewpoints, and by isolating themselves from outside influences.' In my opinion, groupthink is terrifying, extremely dangerous and should be avoided at all costs. Most people are afraid to stand up among the masses in the face of injustice especially when it comes to popular belief systems that have been spoon fed by powerful entities like the AMA, CDC, authority figures like medical doctors and the mainstream news media. Nobody wants to be the one to say something or admit to the fact that things just aren't adding up for fear of becoming a social pariah or even worse, being accused of being a 'conspiracy theorist'. Recently I saw the movie "Spotlight", a truly amazing film, within which this phenomenon was illustrated so brilliantly that I wanted to stand up and start applauding. The fact that a seemingly far-fetched or preposterous idea seems impossible or crazy is the very thing that has the potential to perpetuate a cover-up of monumental proportions. I have learned that if something seems "off" it's usually because something is most definitely off. Trust your instincts, do your own research and don't allow others to influence your beliefs and opinions. I think that people would be shocked and horrified by the reality of the world we live in and what some are capable of in the name of protecting their own interests. Nothing, literally nothing, shocks me anymore. But the thing about the truth is that it always comes out - always. And the truth about Lyme will come out too, eventually. I, along with everyone else in the world affected by Lyme, look forward to that day. And when that day comes, everyone out there remaining on the wrong side of history when it comes to this global pandemic will be feeling pretty moronic. Because, mark my words, it will go down as the CDC's greatest cover up of all time.
21. Pay attention to what catches your attention - it's almost always important. Most of us are fumbling around in the dark until the light gets turned on and suddenly everything becomes glaringly obvious. It was right in front of us the entire time, disguised in a cloak of darkness. In my opinion, getting people to really listen to something they don't want to hear is one of life's biggest challenges. I have learned to become detached to the outcome. I will keep providing the information and it's up to you if you choose to listen.
22. Any and all treatments and/or testing for Chronic Lyme Disease & Co. must be paid for by patients completely out-of-pocket - and trust me, treatments aren't cheap. Believe it or not, the CDC does not recognize the chronic form of Lyme as a legitimate disease, even thought thousands and thousands are suffering from it around the world, and will not cover any costs associated with treating it. That's right - insurance covers nothing! Additionally, no one in the conventional medical profession realizes that antibiotics do not cure Lyme. Alternative and Lyme-literate practitioners charge $450 or more for each visit. The testing alone is $800+++ and not completely accurate. These doctors are often putting their careers at risk by treating patients for Chronic Lyme and many have lost their licenses. (If you have not already seen "Under Our Skin", a documentary about Lyme disease, it's a MUST watch!) I have personally spent thousands and that is very little compared to most people. I know several people who have spent hundreds of thousands, even a few who have spent millions - and they are STILL not well! I know it's hard to believe, but this is the sad reality that people need to understand. Financial devastation is one of the many side effects of living with Lyme disease. Often, they lose their homes, cars, jewelry, go through all of their savings and are left with nothing. And the most tragic part is that when all is said and done, they are still not well. How sad is that?
23. As a result of my illness, many people in my life have shown their true colors and disappeared- it was a painful process but one that I am grateful for because I now realize that the ones who remain are the only ones who matter. As Maya Angelou said, "When people show you who they are, believe them." I take this advice very seriously now. True friends are the ones who walk toward you when everyone else is walking away.
24. Chronic Lyme & Co. wreaks havoc on families - and that's putting it mildly. Marriages are tested, tested some more and then tested again with no end in sight and even the strongest relationships struggle. Tragically, there is zero support for families and individuals dealing with Lyme disease and often, the situation seems hopeless. More marriages fall apart than survive due to the level of stress this disease creates. Lyme creates insane levels of stress on all levels - financial, emotional, physical, psychological. Sadly, in the end, it's the children that suffer the most.
25. This is an important one - and one that most people do not realize. Lyme disease can kill you. People die from it. All the time. I know several people right now who are on hospice due to complications from Chronic Lyme disease and it's co-infections. Often, when a person dies from Lyme, it's not listed as the cause of death on the autopsy report so death statistics are severely distorted. People also commit suicide. Often. And to be honest, I've had dark thoughts at times - I think we all have. If I didn't have three beautiful kids who desperately need me, who knows? It's that bad. I watched my mom die slowly of colon cancer over the course of 4 and a half years. She was my best friend and I loved her more than life itself. This past year, battling this horrific disease has been worse than watching my beloved mother suffer through countless painful treatments and fade away before my very eyes. That's how bad this disease is!
26. The majority of Lyme patients have been treated so poorly by the medical community that most suffer from severe anxiety and fear at the mere mention of going to see a mainstream physician or hospital - and many of us have so much distrust for them that we will avoid them at all costs. Most Lyme patients have been misdiagnosed multiple times and for many years. We have been called hypochondriacs, mentally ill, drug addicts, self-mutilators, depressed, attention-seekers -the list goes on and on and on. When you are severely ill and multiple doctors, distinguished members of our society whom you have always looked up to and admired, look at you condescendingly with judgement, suspicion and contempt and tells you that there is nothing wrong with you, that it's all in your head, that you are crazy, its dehumanizing on such a deeply devastating level that it changes you forever. The very people who you always thought you could turn to in your time of need are the ones treating you like you are scum on the bottom of their shoe, not worthy of basic human decency, much less an accurate diagnosis and treatment for your suffering. It's seriously tragic.
27. Here's the ironic thing...after reading all of the above realities of living with Lyme, some people will still claim that we are all making it up. WHAT? REALLY? WHO IN THE WORLD WOULD EVER WILLINGLY SIGN UP FOR THIS HELL? How can anyone believe that we would actually choose to be in this position? Is it possible that hundreds of millions of people, including children, all over the world are all delusional??? Wake up America, how ludicrous does this sound? Seriously!
28. Finally, above all, I have learned that I am a survivor. A survivor who will never, ever give up - on myself or anyone else. A survivor who will stand up and fight for the rights of all Lyme sufferers out there who feel alone and desperate and hopeless. The truth will prevail. We got this.
Onward!
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