My Lyme Disease Story

When I first started this blog, I did so out of a desire to help others feel less alone than I was as I struggled day in and day out for two-and-a-half years. I will continue to be a Lyme advocate for all of you who are still in the midst of your battles. Having been in remission for three years now, I have had lots of time to reflect. It has been an interesting journey over the past three years as I continue to learn how to live after such a long, and often scary, battle. Sharing my experiences is the best way I know how to come into your living room and hold your hand.

With this in mind, I realized recently that I have never shared with you my full history with Lyme disease. You can of course read all about it in my memoir, but I feel like it’s time to divulge my story here on my blog. This will be a longer than usual post, as attempting to squeeze my journey into a blog post will be challenging. But, I’m going to try…here is my Lyme disease story, in a tiny little nutshell.

When did it all begin?

Unfortunately, this is an impossible question to answer but I, and my doctor, have our theories and curiosities. These suspicions about weird symptoms that began as early as four or five years old are less certain and harder to prove. For example, I began having chronic urinary tract infections when I was very young. I would also catch strep throat if a carrier so much as looked in my direction. They were about to remove my tonsils but I stopped catching it.

Around the age of nine is when I remember exhaustion entering my life. It would follow me around like a dark cloud until my Lyme disease diagnosis and treatment. As I said, these examples are somewhat speculative but still leave me scratching my head in wonder. However, I feel fairly certain that by the time I was nineteen I was experiencing symptoms of untreated Lyme disease.

My first (mis)diagnosis came shortly after I graduated high school. This is my best guess at when it all began for me. I was a dance major in my freshman year at college when extreme fatigue and whole body aching took over. My back in particular felt like it was being squeezed and twisted by a vice grip. The pain and fatigue were so chronic I ended up failing my dance class my freshman year of college, and I was an A+ student. I had started training in classical ballet when I was three years old. I didn’t fail dance class. My body was failing me. Eventually I was “diagnosed” with fibromyalgia. This diagnosis gave me little more than some acknowledgement that my pain was real and recognized medically. However, with no real cure or treatment, I was taught how to “manage” my symptoms.

Other significant symptoms over the next fifteen years

Migraines

It was around the same time when I began getting migraines. My migraines were always visual and rarely accompanied by the terrible headache most people report. Instead, once the blindness, auras and tunnel vision cleared I was left with a dull headache and what I now recognize as brain fog.

Dizziness

A few years later I began experiencing severe dizzy spells, also accompanied with brain fog and dissociation. I was tested for everything…blood pressure, MS, inner ear dysfunction and a hole in my heart. I walked around for a week wearing a heart monitor. All of these tests came back negative. Oddly, the dizziness just resolved one day. It wouldn’t return until my mid-thirties.

Severe menstrual pain

Severe menstrual pain would be one of the symptoms that finally sent me running for help. It’s difficult to explain in a brief manner how painful these periods were. Every month I would be doubled up in pain for approximately 24 hours. By the time I was finally diagnosed with Lyme disease my periods required four ibuprofen to dull the excruciating pain.

Tremor

My tremor began in my early thirties. At first, the tremor was only in my hands and it was a minor nuisance. It would come and go, some days really worrying me and others gone completely. I suppose it was this inconsistency and slow, gradual worsening that allowed it to escape into the background. Over time, though, it was too much to ignore. Lifting a coffee mug to my lips required two hands. My legs began to quiver as I went down a set of stairs. By the time I was in treatment I could no longer apply mascara without poking my eye out, so I gave up.

Other less noticeable symptoms

There are so many symptoms that at the time I didn’t realize were symptoms. Part of me thought this was just my lot in life. Of course, now I know better. Briefly, some of those other symptoms are: tinnitus, night sweats, hot flashes, waking up three or four times a night to pee, straining to fully evacuate my bladder, memory loss, difficulty with word recall, rage, depression and eye floaties. There were many more but those are the main ones that stick out in memory. The last five years or so leading to my diagnosis are a blur for me. I felt like my body was slowly deteriorating, to the point where I no longer trusted it. Deep inside, I knew something was wrong but I was too scared to face the possibilities.

The final countdown

Those final years leading up to my diagnosis I was flopping around like a fish out of water. I was doing my best to survive but it was getting harder and harder by the day. It got to the point where I would lay down at night and worry that I wouldn’t wake up in the morning. But, I was obstinate. Partly because, as I said, I was terrified that something terrible was wrong with me. I thought if I ignored it, it would simply go away. The other more unfortunate reason I waited so long to seek treatment was financial reasons. I didn’t have insurance and I could not afford to go to the doctor. I knew instinctively that whatever was wrong wasn’t going to be cheap to fix. Thankfully, my body starting shouting. It was tired of being ignored.

A slew of symptoms were now prominently disrupting my life. Bowel issues would have me on the toilet for fifteen to thirty minutes, often making me late for work. My tremor had gotten so bad I was embarrassed by it. I was making excuses for my memory loss and stumbling around for words constantly. The dizzy spells returned. Night sweats were sopping. Exhaustion had wrapped me up in a blanket. I had given up on a full-time job because I couldn’t make it through the day without a two hour nap. I exhibited borderline obsessive compulsive disorder. If my obsessive tendencies were interrupted I would fly into a rage. The kind of rage that left me questioning my sanity once I calmed down. To put it simply, day to day life felt tumultuous and nearly impossible. Then, four events came rumbling to the surface. Boiling inside of me for so many years, it could no longer be ignored.

The four seemingly unrelated health issues that had me running to the doctor

The migraine

First, I got a terrible migraine. This migraine was unlike all the others. It came on heavy and fast and lasted for three days. The visuals were stunning and the subsequent brain fog left me dazed and drifting at sea. I couldn’t concentrate on morning conversation with my husband or find the words to respond appropriately. I was terrified by this migraine.

The cold that wasn’t a cold

Once the migraine cleared and my head stopped swimming I began to feel like I was getting a cold. I called in sick to work and waited for the fever, chills and sore throat. I was sure I was getting strep throat again. After a long nap I fully expected to wake up feeling worse. But, I didn’t. Looking back now I realize this happened often. At the time my husband used to brag about my strong immune system. Now I realize that I had no immune system. My body could no longer fight back.

A beast in my uterus

So, after the cold that wasn’t actually a cold passed, my body began pounding at the door. Screaming to be recognized and seen. I had a period that rivaled the pain of childbirth. Doubled over, breathing Lamaze-style until the wave passed and catching my breath until the next one came crashing down. My husband was so worried he questioned whether he should take me to the hospital. By this time, he had been watching me writhe through my periods for five years, but this he had never witnessed. Pain so bad I nearly vomited. At this point, an alarm bell was resounding in my brain. Something is really wrong with me and this is the crescendo. But, it had one more message to deliver before I would listen.

The crack in the dam

I hate talking about this one because it’s really gross. This morning, and the fear that welled up inside of me, is forever etched in my brain. On my way out the door to go to work I had a sudden urge to go to the bathroom again. As I sat down on the toilet, with no time to spare to get to work on time, all hell broke loose. The crack in the dam gave way and went gushing down the ravine.

Never had I experienced a bowel movement that left me panting and trembling. It literally sounded like a water faucet. If I had a mirror in my face I imagine it went ghost white. I didn’t even wait to get off the toilet. This was the final alarm bell and it couldn’t be ignored. With my pants still around my knees I dialed The Bridge Medical Center and told them I needed to see a doctor. Now! Today!

Finally diagnosed

I was still trembling with anxiety when I met Dr. Barter for the first time. She was the picture of calm competence. She ran through my medical history and went over all my symptoms, from childhood to that day. There was no hemming or hawing from her. She immediately suspected Lyme disease with possible co-infections or mold toxicity. She put me on a number of herbals to rule out one or the other.

About a week and a half went by before I called to give her an update on my symptoms. Some things had improved marginally but the two things that remained were a low-grade fever and constant diarrhea. She told me it was time to get tested for Lyme disease. So I went in to have my blood drawn then settled in to wait the three weeks it would take for my test to be processed. That was a long three weeks. In that three weeks my husband and I (well, mostly my husband because I hate researching) did a lot of google hunting. We were convinced that I had Lyme disease before the results came back. But that didn’t soften the blow when it was confirmed. Nothing could have prepared us for what was to come.

My Lyme disease story

 My reaction to the news of my 100% CDC confirmed case of Lyme disease was mixed. On one hand I felt relief. The relief of being seen. I felt validated for the first time in almost two decades of increased misery. On the other hand, I was innately terrified. Somehow I instinctively knew, despite my ignorance of Lyme disease treatment, that this was going to be a long and arduous road that would change my life forever. I could only hope that Will and I were strong enough to withstand the trials looming overhead.The next two-and-a-half years were the most difficult years of my life. It felt like a horror movie version of Groundhog Day. There is no way to articulate in one blog post the details of my treatment so I’ll give you the highlights.

Doxycycline

I opted for a mix of antibiotics and natural herbals for my treatment plan. Dr. Barter started me on doxycycline and warned us that the first three months would be the hardest. Boy, was she right. All of those symptoms I had before were exacerbated to the Nth degree.  I wasn’t bedridden but I was damn close to it. Simple chores like vacuuming or making the bed felt like climbing Mt. Everest. Basic life necessities like showering left me exhausted. Our poor beagle spent very little time outside with me while his daddy was at work. The heat was overwhelming and I could barely walk more than fifty yards.

In my book I titled this chapter Doxy has Moxy. Some of my scariest moments happened in the first few weeks of starting treatment. My body no longer looked or acted like my body. I stopped looking in the mirror because I didn’t recognize the woman staring back at me. I couldn’t wait to get off of doxy. Unfortunately, it only got marginally better, and at times worse, over the next two years.

A rundown of some of my medicines

Over the course of my treatment I would visit my doctor every two months. On these visits we would go through my symptoms, one by one, and note any new ones. It’s from this rundown that she would determine what medicines to put me on. This depended either on which symptoms were most prominent or something she knew we needed to treat before tackling something else. A few of the antibiotics I took after doxycycline were: Rifampin, minocycline, bactrim and cefdinir. She had me taking a probiotic daily, every night before bed so as not to interfere with the antibiotics.

Dr. Barter was also always careful to support my immune system, prevent yeast overgrowth and detox. Some of these medicines included Berberine Plus, Codyceps, Sacro-B, NAC Sustain, Pinella and Immunoplex Caps. Especially in the first six months or so I also took regular hot Epsom salt baths and did light skin brushing.

We also used a number of herbals to treat different forms of the bacteria, as well as the Bartonella and Babesia. Some of these include: Cat’s Claw, Samento, Banderol, Grapefruit Seed Extract and Allimax Pro 450. The two months I was taking Samento and Banderol were particularly frightening and alarming.

**This is by no means a list of my treatment protocol and should not be interpreted as such. I did not take all these medicines at the same time. One antibiotic would be swapped out for another, one herbal swapped for another, etc. It was constantly changing and being updated to address different symptoms. Please, seek out medical help before starting any of these medicines. Even the herbals can cause severe herxing. They certainly did for me.**

The vast desert

My battle was particularly traumatizing for me. Day after day, month after month I had to dig deep to find the courage to continue. I worried about my relationship, my body, my mind and wondered if I would ever get my life back. As I watched the seasons change, sitting on my couch in front of windows that overlooked a small aspen grove, life passed me by. I was in my own tiny prison, trapped like a canary eager to spread its wings and fly away. But, the truth was that the outside world scared me even more than what was happening to me in that tiny condo. I felt like a fragile, antique glass, too delicate to venture past those four walls. Though that condo felt like a prison, it was also my sanctuary.

A few breakthroughs were discovered that would be game-changers for me during those two years. First, Dr. Barter determined and confirmed that my adrenals weren’t functioning. She told me I had borderline Addison’s disease. Next, we confirmed I had Bartonella and started treating that once the blaring Lyme symptoms were manageable. Unsurprisingly to me, she determined that I wasn’t producing enough progesterone or testosterone. Starting meds to balance my hormones was huge. And lastly, she confirmed I also had Babesia and mold toxicity. All of these things in tandem were working against me.

This is one of the reasons I think it’s so crucial to treat with a naturopathic Lyme literate doctor. Dr. Barter treated every part of my body. She found things I daresay other doctors would have missed. I’m grateful for her every day.

A slow but steady recovery

Slowly, little symptoms began to fall away. My memory and word recall came back. The tremor went away. I began to have normal bowel movements. No more night sweats. Improved menstrual cycles (though Lyme disease put me into early menopause). Most surprisingly, I started sleeping through the night. I had no idea this was even possible. You can’t imagine how amazing it is to not get up and go pee four times a night. When that first started happening I was legitimately concerned that my bladder would burst. I didn’t know this was humanly possible. Amazing!

I started exercising, very slowly, and improving my stamina. At the end of two years I was able to go back to work. It was extremely part-time (about three hours a day, two days a week) but it felt rewarding. I struggled a little with normal human interactions, self-conscious and still uncertain of myself. It was an important step though. I was beginning to see the light at the end of the tunnel.

Life post-Lyme disease

I’m not going to ramble on too much longer but I would be remiss if I didn’t address this one last thing. Just as I was getting my life back and had defeated Lyme disease I was diagnosed with complex PTSD. My journey through EMDR therapy was an absolutely inspired episode of my life. I learned so much about myself. I realized that, while the trauma of battling Lyme disease was a significant factor in the appearance of this disorder, it was not the root cause. It only served to bring old traumas to the surface. Traumas that I had never processed.

Life post-Lyme disease has proved much more difficult than I would have imagined. My body and my soul were tested to their limits. Re-integration has been its own challenge. The process has been immensely rewarding and a critical aspect of my healing process. I say this now to underscore my previous post about psychotherapy. It should absolutely be a critical aspect of treating Lyme disease. I really have zero complaints about my doctor. She was, and still is, spectacular. I owe her a debt of gratitude. However, this is the one thing I would change. For the two-and-a-half years of my battle I felt so scared and alone. I think therapy, or at the very least a dedicated peer mentor, would have helped immensely.

As always friends, thank you for reading and stay strong! Keep fighting Lyme warriors! If I could do it, I know that you can too!