Category: Journey 1.0

By the end of August 2002, about one month after my non-stop vertigo and vision problems began, it seemed I had somehow opened a Pandora’s Box of new symptoms. I continued to stumble my way through work, feeling like I was in a dream; or more accurately, a nightmare, as I struggled to make it through each passing day. Who was this person?

It was at this time that the infamous brain fog of so many autoimmune and chronic diseases began, and I started to feel disembodied from my physical self. This is such a hard thing to put into words, but in recent months, I have been introduced to the idea of depersonalization, which seems to partially explain this phenomenon. Imagine your emotional/spiritual-self feeling like it exists outside your physical being, almost like you are constantly looking down at your body through a cloudy window, watching it go through the motions, but feeling very detached from each experience. It is said this might help someone in constant pain (or other traumatic situation) compartmentalize their physical body’s suffering from their mental state as a coping mechanism. I’m not really sure. All I know is that over time, I have felt more and more like this entire journey has been an out of body experience and sometimes it’s hard to believe it’s real.

As I slowly begin my first treatment protocol for Lyme Disease, Rocky Mountain Spotted Fever, coinfections, and related conditions, I’m ready to share more intimate details of the days, weeks, months, and years that led me to this point. Although I fully admit I wasn’t the greatest advocate for my health at age 26, at least I kept a fairly detailed account of how this illness progressed. Since starting this blog, I have wondered how to best explain the tidal wave of strange symptoms that commenced in those first few weeks, as well as the slower roll of new and worsening issues over time. I want to balance sharing enough details to help those in a similar situation, while not putting the rest of you to sleep. So, I’m breaking up the info into three parts. Part 1 (this post) will explain the initial few weeks when my symptoms surfaced with no plausible explanation. Part 2 will describe the strange manifestations of my condition that occurred over the next several years. And finally, in Part 3, I will describe the relatively rapid decline that began in late 2017, prompting me to ramp-up my search for answers.

Part 1: Back to 2002. The vertigo remained severe enough that I was unable to operate “heavy machinery”, or watch TV, for about 6 months. Thankfully, Joel and I worked for the same company at the time, so I had a carpool buddy. I definitely had taken driving for granted prior to the nonstop spinning, and come to think of it, I had taken a lot for granted prior to getting sick. We often hear that you don’t know what you’ve got ‘til it’s gone, and I can say with the utmost conviction that you really don’t know how important your health is until it’s gone.

At about the one-month mark, a myriad of other symptoms started, most noticeably in the form of pain. On August 26th, I noticed muscle weakness and pain in my legs and lower back that, upon standing or walking, made me feel like I was going to collapse. Within a couple of days, the right side of my face and right arm began to tingle and felt numb, so, I took another week off work. As someone that lives with a great deal of guilt (Catholic guilt, to be exact), it was incredibly difficult for me to ask for this time off, even though deep down I was seriously worried I was dying. How silly are the priorities that we place on the various parts of our lives, yet even knowing what I know today, I still would have a hard time asking for that week off work.

On August 30th, the day Joel and I planned to head to Whistler for our annual birthday trip, I started noticing that I was very short of breath and my chest and throat felt tight. I was determined not to ruin our weekend and tried so hard to take a “mind over matter” approach; however, I still remember that fear I felt while sitting in the long US-Canadian border wait, taking shallow breaths, worrying that the further north we drove, the further I was from our local ER. By the time we checked into our hotel, I was so weak I could barely walk across the room. With every step, I felt like I would fall. Although I stayed in bed most of the next day, I mustered up the energy to venture out for an early dinner. Despite my efforts, we ended up driving home the next day and headed directly to the ER, again.

Although I was having issues with my legs, lower back, equilibrium, and breathing, I actually went to the ER because I began having chest pains. They performed an EKG and chest x-rays, and not surprisingly, my results came back normal. While these tests didn’t provide any significant answers, it was that day that I received a second diagnosis (vertigo being the first). The doctor told me I had something called costochondritis, or inflammation of the chest wall. Typically, this is a condition that resolves itself in a few days or weeks. However, almost 17 years later, I still can’t bear anyone touching my upper chest, and even the pressure of my car’s seatbelt is incredibly uncomfortable. That night, they sent me home with some pain meds and told me to rest.

By September 11th, I felt well enough to head back to work. I was still weak, but slightly less dizzy and my breathing issues had improved. Unfortunately, the tingling and numbness on the right side of my face and arms started up again, so my PCP suggested I go back to the neurologist for a brain MRI. Even though my MRI was considered normal, this was when the topic of Multiple Sclerosis first surfaced and would be a constant question over the entire course of my illness. Even so, my neurologist ended up chalking all of this up to “stress”, a theme I would hear time and time again over the next several years.

My Primary Care Physician (PCP) suggested I see an Infectious Disease (ID) doctor, which theoretically, should have been the answer to my prayers. Not unlike the ID doctor I saw at UWMC in 2018, the ID doctor in 2002 ran tests for HIV, Syphilis, Lyme, Rheumatoid Arthritis, muscle enzymes, etc. However, unlike my ID doctor at UWMC, I believe this doctor was truly trying to get some answers and treated my concerns with respect. But alas, all the tests came back negative. I know now that most west coast doctors don’t pay much attention to Lyme Disease (even today), so I’m sure it was barely a blip on the testing radar. I had no idea that 56% of patients tested negative using the two-tiered testing system in place, and at that time, I had never heard of, IGeneX, the go-to lab for tick-borne testing today. In retrospect, I’m not sure what I could have done differently, but it’s hard not to cringe at the fact I was tested for Lyme right away, and they didn’t catch it. Eventually, I want to share a lot more about why the current CDC-sanctioned Lyme tests are not up to snuff, but I will save that for another day.

By this time, my frustration was growing and I was not getting any answers from the western medical world, so I made an appointment with a Naturopath for September 25th. Upon examination, her immediate hypothesis was that the antibiotic, Cephalexin, that I had taken just a couple of days before the start of my vertigo, may have triggered some sort of illness in my body. In her opinion, due to my medical history of asthma, IBS, and several cases of bronchitis as a child, my liver had hit its limit for toxins. In other words, my liver could no longer process toxins that entered my body. So, she asked that I try fragrance-free products, start on a dairy and wheat free diet, and come back in a few weeks.

I revisited my Naturopath on October 9th, with no improvement of my symptoms. Upon physical exam, she found inflammation in my left ear and swollen tonsils. With this new information, she surmised I had an ear infection and that my tonsils were chronically inflamed. She prescribed Amoxicillin and suggested I see a cardiologist and ENT. Looking back, it was probably my naturopath that was closest to diagnosing an initial root cause. She knew there was infection and inflammation, which are the two main issues I continue to fight today.

After some of my breathing problems and chest pains had started to improve over the next couple of weeks, I was cautiously optimistic that I was starting to kick this thing; however, by the end of September all of my previous symptoms came crashing back. Not wanting to take any chances with my heart, I scheduled an echocardiogram for October 16th. I remember that test quite vividly, as it was one of the most painful moments of my life. Because of my overly sensitive chest that even clothes tend to bother, having a doctor push their ultrasound “stick’ into your chest wall with all of their might was more than I could endure. I couldn’t decide if I wanted to throw up or cry because of the pain. This is not a painful procedure for a “normal person”, but it was one I never wanted to repeat! After all that, the only thing they found was a heart murmur, which I already knew I had.

The one area I still hadn’t really addressed was my strange vision problems I experienced with the vertigo. I was noticing pain around my eyes, blurred vision, and dark spots, so I went to an ophthalmologist. His post-examination comments were the most peculiar to that point, as he said my vision was just fine; and then added that “some of my test results were strange”. He didn’t elaborate, said I didn’t need glasses, and sent me on my way. That day, I walked out of one more doctor’s office more confused than when I arrived.

Over the next several months, I started to slowly feel better, although never 100% again. This played a cruel game in my head, and on my body. On the days that I felt slightly myself again, I would second guess the severity of my symptoms and push myself to what used to be my normal daily activities. Then I would pay dearly for exerting that additional energy and would spend several days recuperating, until once again, I would start the vicious cycle over again. This was the beginning of my “new normal”. I didn’t realize until several years later that 2002 marked my first significant flare of an illness that would never leave me, and would continue to flare at an increasingly rapid rate over the years ahead. I didn’t realize that I was actually lucky back then, because I was experiencing flares with the most severe symptoms over a period of several weeks or months, with some time in between that was slightly better. Little did I know that these were the good ole’ days, before the every-minute-of-every-day full blown attack on my body.

The next major flare was in early 2006, and thus begins Part 2…

Consider this… Lyme Disease is growing at a rate six times that of HIV and almost twice as fast as breast cancer, at a rate of 400,000 per year in the US alone, and as far as the world goes, over 1 million just in Eastern Europe. These numbers do not include the various co-infections that many people with Lyme Disease also have (I have a total of 5 separate tick-borne infections). While I am in no way minimizing the severity of other serious health conditions, it’s important to note that our National Institute of Health and Center for Disease Control spends a combined $67,625 for each new case of AIDS/HIV, but only $125 for each new case of Lyme.

To add to the frustration, the CDC continues to paint the incomplete picture that “most cases of Lyme disease can be treated successfully with a few weeks of antibiotics”. This statement implies and assumes that a person knows they were infected by a tick and receives the right course of treatment within a fairly short window of time. While the CDC website mentions that a handful of people may come back with non-specific symptoms, referred to as post-treatment Lyme disease syndrome (PTLDS), they do not condone or support the use of the term “Chronic Lyme Disease”.

So, my question to the CDC is this. What about the people who test positive for Lyme Disease now, but were never tested or treated when originally infected several years ago? I was bitten by a tick as a child, exhibited many of the childhood Lyme symptoms, have been seriously ill since 2002, fought for years for the more accurate (non-CDC sanctioned) Lyme testing, and finally received a diagnosis in December 2018. Because I wasn’t diagnosed and treated within the first few weeks/months as a child, I don’t fit into the definition of classic Lyme Disease or PTLDS. That’s like saying that if a cancer patient isn’t diagnosed and treated within the first few months of a growing tumor, they don’t have cancer. I’m still in the early stages of understanding the political motivations behind the extremely controversial diagnosis of Chronic Lyme Disease, but I will say this. Because my disease doesn’t exist, insurance is not obligated to cover.

To add to this disparity, the CDC’s two-tiered approach to Lyme testing often produces inaccurate results. The simplified explanation is this. Their tests only test for your immune system’s response to the Lyme bacteria, not the bacteria itself. So, if you are too newly infected and your body hasn’t started producing these antibodies, your test will probably come up negative. On the flip side, if you have had the Lyme bacteria in you for too long, it often has the ability to escape detection, having already wreaked so much havoc on your immune system, your body is too weak to mount a response. Additionally, there are over 100 species of Borellia (the bacteria that causes Lyme) and there are numerous tick-borne co-infections that aren’t being tested for at all.

To share a deeply personal perspective of trying to get tested for Lyme, it took me several months last year to get a referral into the University of Washington Medical Center’s (UWMC) Infectious Disease Department to specifically ask for Lyme Disease testing. This was after two other local infectious disease doctors were unwilling to take me as a patient when I told them I wanted to be tested for Lyme. They would have seen me if I was already diagnosed, but did not want to be responsible for the diagnosis. I had asked other doctors for this testing in the past, but due to the complexity of diagnosis, I hadn’t been able to find a doctor that could help. I was really hoping UWMC would have the answer I was looking for!

I could not believe the treatment I received at UWMC. The young female doctor immediately dismissed my questions about Lyme and assured me there was no such thing as Chronic Lyme Disease, which having done my homework and knowing the CDC’s stance, didn’t completely surprise me. But what did surprise me is that she didn’t want to talk about any of my over 100 symptoms that I handed her a copy of, a list that continues to grow more rapidly each year. Instead, the doctor asked about my support system at home and implied that my husband wasn’t providing enough understanding/attention, said I should see a psychiatrist and consider antidepressants, and suggested they test me for HIV, Hep-C, and Syphilis instead (what?!). When I asked why they were focusing on those diseases (which I told her I had been tested for as a precaution back in 2002), the doctor proceeded to tell me that I would be surprised at how many 80-year old ladies came in that had been shooting up or were promiscuous…even after I told her I had been happily married for 22 years! I was in shock, speechless, and so did not do a good job advocating for myself, but they at least appeased my insistence on running the first part of the two-tiered CDC-sanctioned Lyme test, which I already knew would be negative based on my suppressed and weakened immune system.

When all was said and done, the official doctor’s report on file at UWMC was that I came in for Chronic Fatigue (grossly incorrect), I should consider antidepressants, and surprise – I did not have HIV, Hep-C, or Syphilis. I was disheartened, humiliated, madder than heck, and felt defeated. I was at one of the top teaching hospitals in the US and they completely misrepresented the reason for my visit, and it was now on my permanent medical record.

It’s important to note that over 50% of patients with Lyme disease test negative with the CDC’s two-tiered approach, so patients suspecting Lyme are forced to seek out very hard to find LLMDs, or Lyme Literate Medical Doctors, in order to fight for alternative testing. And because these doctors are essentially going against conventional testing and treatment guidelines, most are not covered by insurance and several have actually faced disciplinary actions and/or lost their licenses to practice medicine altogether (if you haven’t watched Under Our Skin available on Amazon Prime Video, it’s eye-opening).

It took me years to find a doctor willing to write the “prescription” for the more comprehensive testing done by IGenX Labs in Palo Alto, as well as interpret the results, which are very complex. With the help of my amazing Internist and tenacious Lyme Literate Doctor, I was finally able to have this testing done (along with several other cutting-edge blood tests) in November 2018. I tested positive for five different tick-borne infections, including Lyme Disease and Rocky Mountain Spotted Fever.

That one IGenX test cost $2000, my two monthly doctors’ appointments are around $700/month, and my relatively non-aggressive first round of treatment protocol medications and supplements are over $2000/month. It will take many different protocols over the next several years to determine what (if any) works best for my particular combination of infections, as well as the damage these infections have already done to the rest of my body. This current plan is cheap in the world of chronic Lyme, where people are spending upwards of $50-$100k per year… Mortgaging their homes in hopes of someday getting better. Hoping that someday insurance will cover…

Never in my life have I felt so strongly about advocating for something. I’m unbelievably ticked off that I was not diagnosed sooner and hope to quickly turn a profit in my new business, so I can start donating something meaningful to this fight! I know there are so many wonderful doctors out there doing amazing things in the world of infectious disease medicine, and I’m hopeful that if enough people start telling their Lyme Disease (and co-infection) stories, organizations such as the CDC will not only listen, but change the current controversial dogma around a disease that is spreading at epidemic levels, and has already ruined so many lives.

I start my first protocol in two days and am scared to death. I’ve heard that the toxins released from the bacteria die-off do not leave the body quickly enough, causing an awful reaction called the Herxheimer Reaction. I’ve heard that this can be as bad or worse than the symptoms of the disease. I’ve heard that a few people have died from it. Similar to chemo, these treatment protocols kill off all of the “good stuff” in your body while killing off the bad. I pray that I have the strength to get through it. I have no idea what to expect and so many Lyme Disease journeys do not have a happy ending. I hope that someday I will get my happy ending.

God, how I wish I had a time machine! If only I knew the moment I was infected, or when the symptoms were still easily treatable, or what eventually awakened this hibernating beast in my body! There are definitely clues from my childhood, and I often wonder if I had paid more attention, could I have prevented at least some of what was to come?

If only I knew when I was first infected…

There is no way to know which bug pulled from my skin and off of my scalp was infectious. This was the 80’s, and even living in the Midwest, where we knew to wear ball caps when hiking in the woods and often had tick-checks when we got home, no one really knew how dangerous these tiny ticks were or what to do with them. Do you burn them? Flush them down the toilet? Throw them in the garbage? Today, several prominent Lyme-advocacy groups suggest that you should actually take the specimen to a laboratory, such as IGeneX Labs in Palo Alto, California, where they can test the tick for disease. But we certainly didn’t know that back then!

While I don’t know exactly when I was infected, I do remember one particularly engorged blood-filled tick that was monstrous in size. I was probably 9 or 10 years old and panicked as mom pulled off the disgusting bug that had attached itself to my head. It still makes me shiver. Given where we lived, my parents at least had the knowledge to use tweezers to pull the tick straight out. But just as parents weren’t told to take the ticks in for testing, many were also given misinformation on how to remove them from our skin. Most people thought that applying heat, often in the form of a blown-out match, was the best way to release the ticks; however, burning them off may actually increase the risk of getting a tick-borne disease. With ticks currently spreading into new areas of our country at alarming rates, I wonder how many people know this even today?

If only I knew when the symptoms were still easily treatable…

I will admit that my memory is a little fuzzy, both from the brain fog that has since ensued and also the fact that this all happened over 30 years ago. However, I do remember a time in my pre-teen years when I called home sick from school almost every single day, never feeling quite right. I complained of nausea, no appetite (which has never been a problem for me!), aches and pains, lethargy, headaches, and flu-like symptoms. Doctors ran some blood tests (although I have no idea what they tested for) and chocked it up to pre-teen angst, hormones, growing pains, etc. However, I now wonder if this could have been the first sign of some type of tick-borne infection. Look up the symptoms of Lyme Disease in children and these fit like a glove. It amazes me how many stories I read that start in the exact same way. If only the doctors had tested me for Lyme back then, back when my body was creating the antibodies to the disease, and back when it may have actually shown up on an ELISA or Western Blot blood test (the CDC’s very narrowly focused testing method that works best in the early stages of the disease), If only I had been tested before the tick’s spirochetes burrowed their way into my organs, tissues, brain, joints, and whatever other comfortable new home they could find.

At about the same time, when I was 10-years old, I also vividly remember night terrors every single night, where I would run across the house to my parents’ bedroom too scared to sleep in my own bed. Guess what? Night terrors are also a symptom of Lyme. Now, as an adult, not only do the vivid nightmares persist, but I’m lucky enough to have added sleep paralysis to my list of symptoms. In short, imagine being absolutely 100% awake in your mind, but you are unable to move your body an inch. You can’t talk, scream, or give any signal to your bed buddy that you are experiencing this. Often, it is accompanied by loud noises, banging, explosion like sounds, and other unexplainable phenomena. I have no idea how long these episodes actually last, because your sense of time is all but lost; however, it feels like an eternity before you can finally pull yourself out of it. In my case, it typically happens as I’m falling asleep, and there have been a handful of nights I have done everything possible to stay awake all night (i.e. walking around the house, binge-watching tv, eating, etc.) just so I don’t have to experience this paralysis every time I start to drift off. If you enjoy a good fright, forget the next horror movie that hits the box office, and instead, do a quick Google search on movies made about sleep paralysis.

If only I knew what eventually awakened this hibernating beast…

In the early months of 2002, I had battled two rounds of bronchitis that wouldn’t go away, both of which resulted in prescriptions of Zithromax – the miracle 5-day dose pack of antibiotics that usually knocks out an infection in a snap. Although I have rarely taken antibiotics as an adult, I was a fairly sick kid and recall the bad bouts of bronchitis I suffered several times a year. I would sit up all night with my parents, wheezing, gasping for air, and scared to death that I was dying. I’m really not being dramatic here, the noises I made were scary and the feeling of not getting in enough air was terrifying. I’m not even sure that bronchitis was the correct name for what I caught every winter, but I sucked down plenty of amoxicillin, which would eventually kill off the sickness that I had caught.

The bronchitis episodes in early 2002 finally seemed to go away. However, a new issue popped up that summer, when my husband, Joel, was massaging my neck and noticed a lump on the left side. Of course, it immediately worried us both, so I visited my primary care doctor and she referred me to an oncologist, who quickly scheduled an ultrasound of the lump. Thankfully, the oncologist did not believe it was cancerous, but she did send me on my way with a prescription of Cephalexin (an antibiotic that I had never taken before). She thought that maybe the swollen lymph node they found was due to an ongoing infection. In hindsight, I should have paid attention to the word “infection”. When I think of all the doctors I have seen over the years, whether as a child or an adult, the word “infection” was often the common denominator. I always seemed to have some sort of infection. So, I started taking the Cephalexin just about 48 hours before that awful day in my office, at age 26, that started this entire health mess.

While I will surely never know when I was infected with Lyme and all of these other coinfections, I can’t help but think that some of these clues foreshadowed things to come. If only I had a time machine to transport me back to the day I was infected, back to the weeks I was sick as a child, or even back to when I had the option of not taking that Cephalexin just a couple of days before things all went downhill. In most of the literature I have read on autoimmune and dormant infectious disease, there is almost always a trigger, be it severe sickness, an accident, PTSD, or a multitude of other things. I will always wonder if this bug laid dormant for all these years just waiting for a virus and/or antibiotic to tick it off and fuel its fire.

Actually, this is a very difficult question to answer and I am still trying to figure it out. All I know is that the last day I felt “normal” was Sunday, July 28th, 2002. On the Monday that followed, everything changed. I remember it like it was yesterday, sitting in my big, bright, and beautiful corner office. I was in my mid-20’s and on top of the world. I had a fulfilling job in tech at one of the nation’s largest companies, had been married to my amazing husband for over 5 years, lived in a cozy and comfortable starter home in a suburb of Seattle, and was about half-way through my MBA program. I was born an old-soul, and was happy to already feel so established at my young age. Little did I know that everything would change in an instant.

At around 1:00 that afternoon, I was sitting at my computer working on one of the myriad of spreadsheets I tackled on a daily basis, when all of a sudden I became extremely dizzy and thought I was going to pass out. At first, I chalked it up to Excel-overload (which can make anyone feel cross-eyed after a while!), or maybe dehydration (had I drank enough water that day?), or possibly just a bit of stress (but who isn’t stressed!?). However, as the minutes ticked on, the feeling worsened. After drinking two large bottles of water, I headed outside for some fresh air. I sat on the curb and took in several deep breaths. It didn’t help. The world was spinning and I had no idea why.

I headed home early to get some rest, hoping that a good night’s sleep would shake off whatever bug I had caught. However, upon rising the next morning and feeling no better than the day before, I decided to stay home. Although not feeling any improvement by Wednesday, I did my best to get through the next couple of days at work even though my symptoms were worsening and were now accompanied by extreme nausea. By Friday, I was spending what would be the first of many nights to come in the ER.

After waiting what seemed like hours, vitals were taken, blood was drawn, and the doctors ran all of the typical ER tests, which came back normal. I was sent home with meclizine (an over the counter motion sickness medicine similar to dramamine) and was told to come back if the spinning hadn’t ceased by Sunday. The spinning hadn’t ceased and I headed back to the ER Sunday evening. A CT scan was performed, which also came back normal, and they sent me on my way with Valium for the vertigo.

Still wondering if stress could be the culprit, I took a week off work. During this time, I went in for a brain MRI and this scan also came back normal. What was happening to me? How did I go from a healthy vibrant 26-year old to someone who couldn’t read, watch TV, or drive because my world wouldn’t stop spinning? Could this really be stress? I was leading a portion of my company’s largest software development project at the time, working 12-14 hour days 6-7 days per week, and working on my Master’s Degree in Business Administration in my “free” time. So, yeah, maybe I was pushing myself a bit too hard, but still didn’t really believe this had changed my health so drastically overnight.

On August 4th, my husband and I had planned to go to a Cheryl Crow/Train concert with my parents at the Gorge in Washington State, an absolutely breath-taking outdoor theater overlooking the Columbia River Gorge. By the time this rolled around, I was noticing changes in my eyesight, like I was looking through a hazy filter with my vision going in and out of focus. With websites such as WebMD now easily accessible, it was difficult not to scare myself with ideas around what this could be. On one hand, I am a researcher at heart and wanted all the information possible to figure this out; however, I had a strong desire to balance the vast amount of information with at least a bit of common sense. I didn’t need doctors thinking I was some crazy hypochondriac. However, not surprisingly, the constant vertigo in combination with vision changes had me worried about a stroke, so it was with much hesitation that I decided to go to the concert.

I will never forget sitting there in the warm sun on the big patch of grass, feeling completely disconnected from what was going on around me. It was as if I was watching my life from a distance in an almost out-of-body experience. I barely heard the music, the crowd was a hazy blur, and I was so weak and lethargic, I slept most of the day. How had my life turned totally upside down in just 1 week?

On August 9th, I returned to work even though I still wasn’t 100%. Thankfully at the time, I didn’t realize that I would never be 100% again. What a daunting thought for someone so young. Over the years, I have come to terms with the reality that I will never feel better than I do today; however, that pill would have been even harder to swallow at 26. I wobbled my way through the next couple of weeks at work, knowing how out of sorts I felt, but hoping others wouldn’t notice. I remember walking down the hallways with the harsh overhead fluorescent lights, which seemed to bother me wherever they were present, making me dizzier with each step. I knew deep down that there was something really really wrong with me, but the doctors at that point chalked it up to a bad case of vertigo. Little did I know that this was just the beginning…