I have Lyme. I’d like to not have it anymore. I also just want cake.
It might behoove you to grab a snack.
Growing up I was super healthy. Like toot my own horn healthy. Just listen, once I got walking pneumonia as a child and took an antibiotic. Other than that illness, I never needed anything. Until age 32, I had only taken an antibiotic the one time, in fact. Occasional colds and flus would also strike… sure, chickenpox… of course, but nothing that ever needed medical intervention. I recovered from flus and colds quickly as well. I spent my time intertwining my life with as many animals as possible. I was also happiest in the woods, climbing trees, and doing all barefoot. At one point in my childhood I started developing migraines that would hit occasionally. We brushed it off as a result of a whacko sledding accident that I had experienced which sent me down a hill like Jack and Jill. Or perhaps one of the times I fell off a horse. These migraines came and went right through to adult life. Sometimes, they were accompanied by aura. As a teenager I would have occasional weird stuff like random patches of painful skin, but it would disappear as soon as it appeared so I never gave these things two second’s thought. I thought it was totally normal. I mention this only because all of these “little things” would return (15-20 years later) while on my Lyme treatment and then I’d be all “hey I remember you!” Regardless, I was high functioning, full of energy, slept like a baby, had a vigorous appetite, and was a normal child and teenager.
I got engaged at 22. On the day of my wedding I started feeling sick and thought it just my supreme luck to be coming down with the flu on my own wedding day. Two days later I was in a student clinic at a University in Utah where we had planned to spend the summer for a class. I was told I had Mono by an unimpressed doctor. I then politely excused myself to the public restroom in the waiting area and fainted alone behind the locked bathroom door. I had never felt so weak. I remember later that night lying on a makeshift bed on the floor in front of a fan, fighting the high fever in the middle of the hot, Utah desert heat in an old dorm room that had no air conditioning. It was the first time in my life I felt sick enough to die, which was completely foreign to me. Then I got up to make a peanut butter and jelly sandwich.
It took me two months to recover from Mono. I had a particularly bad case of it and my liver swelled severely along with my spleen… Every exhale these poor inflamed organs were poked by my bottom ribs. It was uncomfortable and I was probably a joy to live with. However, by the time we got in our car to begin the road trip back to Michigan (our hometown) at the end of the summer, I had been back to jogging and hiking and normal activities. I look back on myself as I loaded up my car with deep sympathy… Oh, sweet me, this was just the beginning.
I got a roundhouse kick to the face in the middle of Iowa, in the middle of the night, in the middle of that road trip. I started feeling really trippy. Something was wrong with my brain. A few hours later I started feeling really sick to my stomach. It took forever to build, which was tortuous. During one of the many rest stops I visited waiting for something to happen, I made myself a sanitary nest out of toilet paper on a dirty gas station bathroom floor and nervously watched the shadows of angry trucker feet pace the door in front of me waiting for me to leave. Eventually I required a hotel. It took a while to find one amidst the miles of cornfields, and for some reason which still baffles me to this day, it took forever to find a hotel with vacancy in Iowa. If any of you know what was going on August 2003 in Iowa please, end this mystery for me. Anyways, a room was eventually procured just in time; I ran in and began throwing up immediately. The next 12 hours were some of the sickest I had ever been, even to this day. I spent 12 hours throwing up every 5 minutes, collapsing once on the floor and blacking out to the world for several hours before resuming again. I never even cared my bare face was hugging the dirty motel bathroom floor so much I that had the tile grid pattern indented in my cheek. I was too sick to even be afraid OR grossed out. By nearly midnight I cried uncle and made my then-husband put me in a car and take me to a hospital in this strange town. Eventually a clinic was found that I’m not even kidding, looked like a barn, and we can’t even be sure it wasn’t, and was run by two little old ladies. To this day I don’t even know. In my delirium we probably can’t even trust this description. The ladies injected me with something I swear was “2 cc’s of vinegar”, and sent me off. In hindsight with my repertoire of pharmaceutical knowledge, it had to of been Phenergen. That’s the closest thing I can think of to sounding like the word vinegar. Otherwise, Iowa, you strange.
Regardless, it worked, and I started feeling better. During this ordeal the Northeast blackout of 2003 affecting 45 million Americans and parts of Canada was going on. If you lived in one of the affected areas, you remember. I came home to Michigan with no power. This detail is totally irrelevant. I seemed okay for a few weeks… weak from my one-two punch of Mono and whatever this Iowa thing was, but okay. And as it would numerous times yet in my adult life, my body began a pattern of freaking out just when I would start to get comfortable with my recovery. A few weeks later I started getting strange symptoms and going downhill again. My heart would explode out of my chest for no reason (aw, my first few ER visits), anxiety, body pain, headache, severe fatigue, weakness, ongoing nausea issues, and brain fog began to descend on me… and wouldn’t leave. This prevented me from being able to work or go to school for two years. During that time I was diagnosed with Chronic Fatigue Syndrome and put on Zoloft. After a few weeks I found the Zoloft insulting and discontinued it. My liver and spleen would swell up again randomly so I just thought I had post-Mono syndrome. Later I would learn these are very common symptoms of Babesia.
So, previous healthy me struggled with a capital “S” with these times. I was extremely frustrated with my inability to do the things that I wanted. It was the first time I’d experienced anything like this and out of sheer lack of answers, sadly I accepted my diagnosis. It didn’t help that the internet resources we have today were nowhere near as vast for me back then. A post-viral type of syndrome was the best I could find. Clearly I had been weakened by the prior illnesses and looking back, perhaps Lyme had opportunistically reared its head for the first time in my life. I focused on eating healthy foods, taking various herbs/supplements, and getting lots of rest. I did this myself with my own knowledge base and research. Over time, it worked. Two years later I was working full time again, exercising, and experiencing no symptoms other than my migraines. I had also amassed an impressive herd of furbabies by this point.
During the remainder of my 20’s and into my early 30’s I experienced no serious health issues that held me back. I did, however, struggle deeply with hormone imbalance. It was the bane of my existence at that time. No doctor or therapy worked. I reacted badly with many of the hormone supports they had me try. I went through periods of just dealing with it alternating with periods of just suffering the various side effects of the estrogens and progesterone they would give me. I believe this is where my HPA Axis was beginning to unravel. I also occasionally suffered from periods of fatigue, headaches, and nausea, but they were infrequent. I was always well enough to work and exercise. My late 20’s was a deeply stressful time in my life which I know slowly eroding my defenses under my radar and contributed to my eventual collapse. I went through a divorce, moved across country, remarried a deeply controlling man and endured various abuses, buried my little brother unexpectedly, moved back home to Michigan, and ultimately, divorced again. These were dark days for me. My health was the last of my concerns.
By 29 I found myself living in my parent’s basement with my dogs and several, several U-Haul’s worth of emotional baggage. With no job, no money, and no feelings of accomplishment for the past decade of my life whatsoever, I turned to vigorous exercise. I beat the stress out as I did P90X and The Insanity Workout videos every day. I didn’t do this excessively, but my one hour per day where I could just zone out and sweat and push myself became my therapy. Plus, guys, I started looking and feeling really good, almost like I could start tooting my own horn again hey-oh! I spent time walking my dogs down the dirt roads and woods I played in growing up. I found a job and even started going back to school part time. It was the healthiest I’d felt since childhood. In fact I felt like I had even more energy than I could ever remember having. I spent a year with my parents humpty-dumpty’ing and working very hard to put all the pieces of my life back together. To have had my health during it was a blessing. The mystery illnesses of the previous decade became smaller and smaller in my rear-view mirror.
After that year, I put my brave big girl pants on again and decided to move to Utah for a fresh start. I found work that I really enjoyed, continued my love for fitness, began dating my now-husband, and enjoyed exploring the endless amount of outdoorsy-ness and breathtaking mountainous spaces this area of the country has to offer. My energy continued to improve and I literally leapt out of bed every morning to go to the gym and have my “me time”. I was annoying about it actually. Fitness and yoga became a passion for me the better I got at it. I credit it tremendously for helping me grow confidence in and appreciate a body that had given me a lot of grief earlier. Not to mention it gave me several years of the best health of my life.
It wasn’t time for me to get too attached to healthy me though. My days were numbered. Sometime in 2012 I started waking up with one of my arms having fallen asleep, even though I did not sleep on it. I thought it was super weird but chalked it up to weightlifting. Around this same time I would occasionally get these “brain skips” where vision would blur and I would feel the sensation of my brain being pulled back through my skull and my heart would flip-flop. It would last a second or two and then I would be fine. It happened infrequently but was unnerving nevertheless and I kinda wanted to forget about it and practice denial. I went on with my life. Early 2013 I married my husband. Life was good! I began to feel like finally, the reign of brokenness was ending. As I did the first time, I just look back on myself here and my heart just breaks for her naivety. I want to hug her and warn her and… give her a sucker or something.
A month after that I had a minor out-patient surgery to remove a benign cyst. The next day I woke up feeling like I had been backed over by a car. I was nauseous, had body-wide pain, headache, and severe malaise. I developed a bad case of hives for the first time in all of life, especially where my incision was and the surrounding areas. My surgeon was puzzled and we just chalked it up to perhaps the flu and my hives the result of a betadine allergy. I’ve since slathered much betadine on myself with no problem. Hindsight is always 20/20 though and looking back, that was my first Herxheimer reaction – a response to the bag of IV antibiotic they gave me prior to surgery. While my healthy days were numbered, so were the lives of the awful little monsters inside me.
I recovered after 3-4 days but I never really felt 100% after that. My performance in my workouts began to stall and then decline. I was more tired. I also started developing brain fog and the feeling of disassociation. I was running to pee every 20 minutes it seemed which became bothersome for me at work and at night (ok so like all the time). I backed off the intensity of some of my workouts thinking I was just doing too much. So many signs and yet I ignored every one of them. Three months later, boom.
June 2013, ten years to the week after coming down with Mono and that first bout of chronic illness, my world was rocked again because someone decided Tara can’t have nice things. I was woken up in the middle of the night by my heart thumping erratically in my chest, intense feeling of panic, trouble catching my breath, a weird and intense “buzzing” in my head, and the feeling that passing out was imminent. I just curled up and waited it out in a total state of fear. It lasted about an hour. I woke up thinking “well, that was weird”, and nervously went on with my day simply because I had no frame of reference for that sort of attack nor an idea of how to even verbalize it at the time. A few days later I felt really “off” after work. My arms felt heavy and weird. My disassociation came on full force. I went to bed and was again woken up by the weird head-buzzy-heart-floppy attack. This time my entire right leg went numb during the attack and I was like “Ok well now I’m probably dying” so we went to the Emergency Room. All tests, including a CT scan of my brain, came back normal.
I never recovered from this attack.
The next few days brought the sudden onset of 40+ symptoms, most neurological (for a full symptom list visit my FAQs). Before I could even comprehend what was happening, I became a very, very sick girl.
I thought certainly, I will not survive the year. If I felt like I was dying when I had mono, I felt like I was completely terminal now. I knew my body couldn’t continue to function like this for long, just like you can’t put the pedal to the floor in a car and expect it to go forever. Everything was in overdrive. I had many unproductive trips to the ER, I saw my general practitioner a few times and was told to take an anxiety medication (which I did not), I saw a cardiologist, an endocrinologist, a neurologist, and a naturopath and none of them could produce any plausible explanation, find anything wrong in a battery of tests or labwork that would explain this, or put me on any medication or natural therapy that gave me relief. This lasted several, several months. If I took a Xanax I found relief for a small handful of my symptoms for about an hour before they would return. I knew, deep in my heart, that my body was under attack by something and that this was not an internal problem. I felt it. I had countless lists all over the house describing symptoms, timelines, and test results. I’d make a list every day in fact… hoping it would give me a clue I could tell a doctor. Despite my requests, tests for infectious disease were never something I could convince doctors to seriously give me.
Once Multiple Sclerosis was ruled out (my neurologist’s primary concern), I began to feel prompted to research Lyme disease. It had come up a few times when I googled my symptoms. I am devout in my faith and I knew God was guiding me. I also knew I certainly had plenty of potential exposure to Lyme even though I never recall being bitten by a tick. I crawled through the woods as a child pretending I was a deer for goodness sake. This idea of Lyme disease gnawed at my mind for months, I just had no idea where to turn or who to ask for help in discussing this possibility. “Lyme-literate physician” was a term I had never heard before. That fall, I visited my parents in Michigan hoping that a little rest and relaxation might help my symptoms. While there I watched the documentary Under Our Skin with my mother. I saw the character Mandy, standing in her front yard bent over with her arms held unnaturally in front of her, looking completely absent and consumed with something inside her and my heart sank. Her eyes had this sort of panic in them, and I knew that look. For the first time, I saw my chaos in another person. She was me. And I didn’t want it to be so. That documentary really depressed me. I knew I had Lyme, and according to that documentary, there was no easy fix. I still operated under the dogmatism of much of modern medicine that tells you treatment brings timely relief. I had to unlearn all of that to beat this.
I found and made an appointment to see an Integrative doctor in Denver, Colorado and waited out the two months until it arrived. He diagnosed me with Lyme disease and Babesia in November, 2013. I began treatment with Azithromycin and Mepron along with some supplements immediately thereafter. I declined rapidly. I developed seizures within weeks. Four weeks later I struggled to breath one evening and was carried into the ER by my husband and father, where I then seized on the hospital bed. Convinced I was on street drugs despite my saying otherwise, they ran a full drug panel and it gave me great satisfaction to see them puzzled by my negative drug blood levels. I was given Ativan and sent home once the fury passed. I could now no longer take an anti-microbial medication dose without falling apart completely, and it was getting dangerous. My doctor in Denver didn’t have answers and just kind of shrugged his shoulders blaming it on an inability for me to detox. Any wind keeping my sails from collapsing at this point was gone. I felt like my body was rejecting the only thing that could help me. It is an awful place to be. Months later I wrote that doctor a letter telling him he was less than helpful which I’m sure did much good and was not a waste of my time whatsoever.
A few weeks after that my mother and brother researched the doctor that had brought Mandy from that documentary we had watched, Under Our Skin, back to life. They made me an appointment. I was very resistant as I matter-of-factly believed his therapy would kill me. I could hardly tolerate a crumb of Azithromycin and was rejecting supplements and many foods. I couldn’t drink a glass of water without a cascade of symptoms happening in response. My sensitivities had made my world one full of booby traps and very small. I feared everything.
Yet, a voice inside me said “do it”. My father drove me across the country to Washington DC to see this new doctor. It took three days and the hardest part was having to stagger into rest stop bathrooms and fear seizing or fainting alone while my father waited outside. I looked rougher than any truck driver and got many stares. At my appointment, nothing about me surprised them. I suddenly felt validated in every moment of this bizarre and senseless illness. They had an answer to all of my questions and an explanation for why my body was being like it was. I felt understood and although I was terrified to death of the impending treatment, I felt my only alternative was actual death. I hunched over that entire appointment so weak I could hardly hold myself up. I went forward. I spent two months detoxing and stabilizing on seizure and sleep medications to calm my body in preparation for treatment. During that appointment my doctor felt concerned my gallbladder wasn’t functioning properly (despite little GI symptoms aside from nausea) and was harboring Lyme bacteria so I was sent home with orders for scans. He was right. My surgeon back in Utah was all wishy washy and suggested I wait and defer surgery because I was asymptomatic. I told him my Lyme doctor won’t treat me unless it came out and before I could even finish he goes “OKAY NEXT THURSDAY THEN”. I was like “geez wow calm down but yes”. After surgery he told my husband it was the right call; my gallbladder had been covered in scar tissue from some kind of chronic infection (gee I wonder what). In April, 2014, I had a PICC line inserted and began aggressive IV antibiotic therapy.
One year and two PICC lines later, I “graduated” and had my central line removed and finished the IV portion of my treatment. I’ve written much about this period on the blog so I will skim past it here. It was hard; I got much, much worse. I wanted to quit many times. But I woke up, I hooked up, I infused, and I dealt with my resulting further decline with a stubbornness and hard-headedness I had never mustered before in my life. I didn’t experience any improvements this first year except for gaining the cognitive ability to read and write at about the 8 month mark. This is when I was able to start my blog. I spent a lot of time missing my former self and made frequent depressing comparisons and pining over my previous life. Over time I learned to adjust my attitude, embrace my new circumstances, find fulfillment in new ways, and appreciate the new form of strength I was developing. Being forced to slow down and humble myself came with many spiritual blessings.
Physical improvement did come, eventually, in very small and unremarkable bits and pieces during the 12-18 month period as I continued aggressive treatment post-IV with oral antibiotics, anti-malarials, and anti-parasitic medications. By all appearances and measures of functionality, I didn’t seem to improve. But if I thought about it and analyzed my symptom trackers, some symptoms were going away. Many new symptoms also popped up though, so the year after my IV treatment was just a year of trading old symptoms for new. It was an interesting thing to see weird things I had as a kid return during treatment, such as my painful patches of skin, before resolving and disappearing for good. This helped my doctor and I to “date” if you will, the length of my latent illness during those years growing up. I was likely infected with Lyme as a child or young teenager. Perhaps I acquired co-infections then or perhaps at later dates. Who knows, and in the end, it didn’t matter.
October of 2015 I drove myself 8 hours across the Nevada desert to meet a friend in Reno. This was a huge milestone as I had been unable to drive for the longest time. Later in the spring of 2016 (two year mark) I began to lightly jog again. It was another huge milestone. I couldn’t do it regularly, but on my good days, I could. Fall of 2016 I could go camping and hike several miles. As of April, 2017, my official three year mark of aggressive antibiotic treatment, I am doing well. I’ve gone back to school, I function, I’m coming off medications and tapering down the aggressive treatment.
Of course, I still have my bad days where I can’t do much. In fact those days still comprise about a fourth of my life… sometimes more if we’ve just changed up my treatment and it hits me a new way. My symptom list has dramatically shrunk though and remaining symptoms are MUCH milder than they were. I still get a new symptom or issue here and there, but I believe it is all part of the healing… all part of the uncovering. Suffice it to say, wind is starting to pick up those sails of mine again.
I spent a lot of time (probably more than necessary) explaining my earlier history because a) it is physically impossible for me to write something short and b)I know that was the most crucial factor in my developing this late-stage, severe neurological manifestation of Lyme. There were so many warning signs that inflammatory processes were starting to run amok despite my seemingly good health in most phases of my life. My two-year illness post-Mono is also significant. When things don’t make sense guys, something isn’t right. I believe that was Lyme shouting at me for the first time during a period of immune comprimization. When I was well, it whispered and was easy to ignore and symptoms easy to forget. I took really good care of myself during that first bout and I fought my way back naturally – by way of having no other choice as I was ignorant. Ten years later I relapsed and relapsed hard, with clear signs of the disease having progressed deeper into my neurological system despite those years of meticulously taking care of my body and feeling so well in-between my two flares. That “treatment failure” scared me sufficiently enough and became one of the reasons I chose an aggressive bactericidal therapy as opposed to more gentle or natural means. I felt I had already done natural and it had not stopped the spread even if it eliminated my symptoms for years. I don’t regret any course I’ve taken since, and although it was very grueling, the prize was worth the price!
If I could impart any advice at all, it would be live beyond your fear. This disease requires it. If you stay in your safe zones you won’t get better. You’re not alone and there are many of us who understand your feelings. This illness is so interwoven with fear and I haven’t figured out yet exactly why. Perhaps it is a product of complete physiological upheaval and/or brain inflammation that makes us some sort of rabid. But regardless, you won’t get rid of it; you have to learn to exist with it. It’s going to constantly sit on your shoulder and burden you with its voice. Don’t let it factor in your decision making processes. Secondly, stick with it. Don’t give up. Progress is slow and arduous. Some people take many, many years, some not. The comparison game will confuse you and cause you to doubt. Find a doctor you can trust, a therapy you can trust, and just get stubborn about it. Stick with it. Shoulder to the wheel it. Play this game of chicken with the disease and make it give up first. However long that takes. There is life to be had.