A girl and her bike: A story of reclamation 

For as long as I can remember, I’ve longed to be a bad ass lady cyclist.

As a kiddo, I’d see the streams of riders traveling single file along the rolling hills at the base of the cascades where I lived. Clad in their bright colored spandex, I knew they were settled in for long, beautiful rides. I wondered what they’d see… how far they’d go.

As a young adult, I’d stand at the tennis courts at Cal Anderson Park (where I’ve never seen even a single sole with a tennis ball). Fingers clutched through the chain link fence, nose pressed through the gaps, I’d watch the bike polo players as they chased the ball on their fix gear rides. Impeccable balance, CRAZY finite control skills and creative street fashion, I loved every single thing about them. Sometimes I’d move over to the bleachers and just spend a warm summer evening alone under the glow of the park’s night lights just enjoying the game. Wondering if I could ever move a bike half as well.

But learning something new is scary. Especially something you DESPERATELY want to be good at.

Tolerating failure didn’t come very naturally to me. I hated looking unskilled. I was afraid to ask newbie questions. I never wanted anyone to see me do poorly at anything. My pursuits were safe. They were calculated. They were mostly things I could learn in private.

I had started to get over this set of fears when I began CrossFit in 2011. After all, no one could possibly expect me – a non athletic, ultra tall string bean – to be good at Olympic lifting. It was SO far outside my experience, I felt pretty ok admitting I had no idea what I was doing.

One day, when I reached far beyond my ability for an overhead squat PR, I fell under the weight of the bar. Mortified, my face flushed red. The voice in my head told me right away I’d done wrong and should be ashamed for even trying such a thing. And I was listening. But just a half second later, a louder voice quickly overpowered it. My coach, Evan, bellowed from across the room, “Fuck yeah, Karla!!! Way to go for it!”  And right there, as I lay splayed out on the gym floor with my barbell bouncing behind me, it clicked: Failure is how you get better at things.

Again. Faster.

For the next 4 years I was too obsessed with weight lifting and CrossFit to think about any other athletic pursuit. I sort of forgot about cycling.

And then…. I got sick.

When I suddenly lost my hearing and developed a vestibular disorder in October 2014, basic movement became hard. Staircases were the scariest thing I’d encounter. Bending over to clip leashes on my dogs took all my effort and energy. And the day’s hard work was often a hiking pole aided walk to the end of my driveway and back.


Many months into my illness – even after my vestibular system and hearing recovered – overwhelming fatigue, a failing thyroid, plantar fascia inflammation, joint pain, muscle spasms, aching knots, tremors, and more kept me from much activity. It’d take me ages to walk even the very short distance from my new city apartment to my office. I stopped for rest often. Sometimes I’d have to get on the bus. There were a lot of tears during this time. I felt just desperate, broken, scared and alone.


In short, nothing very athletic was even on my mind. Every day I simply strove to survive. To keep air in my lungs long enough to see another day. To hope I’d find answers, to hope I’d find treatment, to hope I’d find progress. To hope I’d even find hope.

Eventually, answers came. In July, 2015, after 9 months of shifting forms of serious disability, I tested positive for late stage Lyme disease. I was clinically diagnosed with Bartonella. I began antibiotic treatment. I cleaned up my diet. I tried to reduce my stress. I did my emotional housekeeping. And I just… plugged… away.


4 or so months in, I started to see progress. The nose bleeds stopped first. Then some of the pain. My eyesight got a little more consistent. I started to have a little more energy. I began to sleep through the night. Month after month, I tracked my progress. And my symptom lists got shorter.

In the Spring of 2016, I was well enough to try my hand at dating for a bit. And the boy I fell for… was a cyclist. All of a sudden all the things I’d longed to love were up close in my life thanks to him. In May and June, we went for a handful of short bike rides together… my first since I was a kid. I’d ACHE for days afterward, but my heart was flying.

Shortly into the season, he was biking distances I couldn’t have even hoped to try, and I got off my bike and became a cheerleader. In July 2016, the morning of the Seattle to Portland bike ride, I filled his belly and kissed him goodbye at my doorstep around 5am. I met him at the finish line about 16 hours later. I cried and cried when he crossed. I felt alive, electric, and full of love for everything surrounding me that day. Sometimes I wonder if maybe that day meant even more to me than it did him.

You see, I wondered more than once, standing at that finish line, whether I might be able to accomplish such a feat someday.

Just a few weeks later, he and I parted ways… his dream of biological children was just too high on his wishlist for him to part with, and he arrived at my doorstep one morning to tell me I “wasn’t worth the sacrifice”.

That was the last time I was in love.

In my aching heart, I realized that much of what I missed (besides partnership and love in general) was bicycles! But the season had me moving into a cold, dark winter. And I was distracted with house shopping. I resolved that, as soon as life – and my body – would let me, I’d learn to be a bad ass lady cyclist.

Well. You all know how well the whole house thing worked out for me. After two and a half weeks in my beloved South Park townhouse, I fled it forever to escape toxic mold. I left all my belongings behind. Every. Single. Thing. And the only one that made me cry that day… was the loss of my bike, which I left in what felt like a pile of shattered dreams.

After a few months of couch surfing and toiling over how I might save my home, I realized the pursuit was fruitless. I resettled in a vintage apartment in the Capitol Hill neighborhood of Seattle. I moved into my new place with a single set of fresh, uncontaminates clothes, a sleeping bag, and a Christmas tree.

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8 days later, I bought a bike.

I started out with a couple of easy rides. One alone on the Burke Gilman trail. “Bonding with bae,” I called it on Strava. Another was a Tinder date with a very patient Russian. And in February… rainy, cold February… I started riding with Cascade Bicycle Club in their Getting Ready to Ride series.

High on the excitement of having finished my very first GR2R series ride, I ambitiously and excitedly signed up for the Cascade Training Series – a 13 week training program that would begin immediately following GR2R in April. With maybe 40 aggregate miles under my belt as an adult, I was reaching right for the program that would take me to my first century.

Again. Faster.

The rides that I went on with Cascade Getting Ready to Ride series were all over the map. Every single week was my longest, hardest, scariest ride. I went my first 15 miles, then 20 and finally 25. I climbed my first hills. I tackled my first switchbacks. I stretched for the faster pace group. I got left behind. I learned to change a flat tire. I cried. I laughed. I made new friends. I wondered whether I’d be fit enough and fast enough and have enough endurance to actually participate in the Cascade Training Series. My ride leaders kept telling me, “you’re ready” in spite of my still pretty slow pace and very shaky self confidence.

April 8, 2017, I arrived at Cascade Bicycle Club for our first CTS ride. I tied my yellow ribbon to my helmet and nervously made my way through the bustling crowd to my self selected pace group, Yellow 7. I reminded myself over and over that it was ok to get dropped to Yellow 8. It was ok to get left behind completely. It was ok to quit this series altogether if I needed to. I had tried. My faith in my body, it seemed, was in no way restored.

I rode 25 miles with my new group that day. I rode at the front of the group. I even climbed the steep switchbacks among the fastest of them. And at the end of that long afternoon, I loaded my bicycle onto the back of my car smiling ear to ear. I was doing it!!

I went home that night, and I registered for the 2017 Seattle to Portland ride. “I have no idea if I’ll make it to that ride,” I reassured myself, “but I have a spot saved if I decide to try.” A few weeks later, after and inspirational speech by a woman who climbed Everest, I booked my hotel at the finish line and my train ticket home. Little by little, my confidence was building.

I’m 4 weeks into my Cascade Training Series now. I am in the saddle 3, sometimes 4 days a week. Just last week I rode 97 miles  in total. This week, I’ll do my first half century.

Every ride is still my longest, hardest, scariest ride. I’m nervous every single time I get geared up. I spend hours out on the Burke Gilman trail practicing the skills everyone else long ago mastered: Taking my hands off the handlebars, signaling, stopping, dismounting, starting again. I ride hills on loops, giving those baby cyclist muscles the care and feeding they need to grow. Every day I wake up and, one way or another, I support my goal.

I still don’t know whether I’ll finish the Cascade Training Series, if I’ll make it to the STP, or if I’ll cross that finish line. But I know I’m at the start of something really great here.

And if I do cross that finish line on Sunday, July 16, 2017 – on what will be my 2 year anniversary of treating late stage Lyme disease – well, I’ll consider this body of mine reclaimed.

And I just might finally call myself… a bad ass lady cyclist.

What about babies?

Man. As if dating isn’t hard enough. Dating with late stage Lyme disease? It’s proving a bit disastrous as of late. I mean, it’s not hard in the ways you might expect. I come up with plenty of alcohol-free date ideas. Most people are pretty darn empathetic about the whole Lyme thing. And for the most part, I’m accepted just how I am by potential suitors. With one exception: Babies.

I suppose it’s because I’m 33 now… and the guys I’m dating are mid to late 30s. But it seems like the main thing on everyone’s mind is procreation. And even though I tell fellas in the FIRST COUPLE DATES, that I feel I am reproductively challenged… they still manage to dump me for that exact reason THAT THEY ALREADY KNEW months later. It is THE most frustrating thing.

It’s been frustrating enough that I’ve gone back to the drawing board on my stance on having biological kids. I mean, when I first realized that my multiple sclerosis diagnosis was a mistake, and that I had hope of achieving lasting wellness with Lyme disease, the FIRST thing I thought was, “maybe I can have a family”. Later into my fight with Lyme, I became aware of all the risks involved with biological babies, and once again shut down that particular part of the “have family” dream. But the landscape on Lyme disease understanding is changing SO rapidly, I think I owe it to myself to keep abreast of all the current research before I marry any single idea about how I might build a family.

Of course, opinions vary WILDLY here, so I’m just going to add this disclaimer: I am speaking in this blog about only my stance and the thoughts in my brain about my personal comfort level with the notion of having biological kids. I cannot tell you what is right for everyone. And I don’t blame any Lymie who makes a different decision than I do.

For me, when I think about having biological kids, I worry about several things:

  1. Passing Lyme disease & coinfections to the unborn child
  2. Passing Lyme disease & coinfections to my baby daddy
  3. Relapsing due to the stress of pregnancy
  4. Having a difficult pregnancy due to my sort of more fragile body
  5. The higher risk of autism, miscarriage and other complications.

Honestly, #3 and #4 is what scares me the most. They’re all super valid, but there are comforting facts about 1 and 2 at least (and 5 by extension).

The protocol for preventing transmission of Lyme, at least, to unborn babies seems to be getting better. Articles and video (58:25) by Dr. Marty Ross has been my main source of information on this subject. According to him, small studies and one old Lyme disease database suggest that Lyme transmits about 25-50% of the time from infected mother to unborn baby. But, when the mother is treated with an antibiotic during pregnancy, that risk drops to “nearly 0%”. Nearly 0% sounds pretty good to me.

I would also assume that this reduced transmission of Lyme to unborn baby would also reduce the risk of #5 on my list, as Lyme infection in the fetus is what’s thought to cause the higher risks of autism and miscarriage. Now, this isn’t perfect, obviously. Coinfections are still a problem. But I guess I hope that if the baby doesn’t have Lyme, it may be easier for them to fight off a coinfection. After all, it’s my perspective that Lyme infection alone isn’t what makes us so sick, it’s a combination of factors that includes our overall infectious load status. The fewer infections I can pass to my baby, the better. But if they don’t get Lyme, which seems to bog patients down the most, I think they’re better equipped to handle what I DO pass.

I am slightly less worried about item #2. Not because it’s not a risk… it is. Lyme disease has been shown to exist in sexual fluids of both men and women. This doesn’t 100% mean it’s transmitting this way, but it’s likely. And anecdotal reports sure seem to suggest this is happening. But, I worry less about this because A) my would be baby daddy is a consenting adult who can assess the risk and make his own decisions, B) I believe Lyme can be treated pretty darn effectively when it’s JUST been transmitted, C) I think putting dad on his own antibiotics while we are “trying” might be an option, and D) I don’t think everyone who contracts Lyme disease is devastated by the illness – this post about MSIDS explains my perspective on that a little more. In short, I think dad could be totally ok.

So that leaves us with #3 and #4, which are my biggest unalleviated concerns. You see, getting well from late stage Lyme has been sooooo challenging for me… and I’m single, childless, and financially able to afford most of what I want to try from at treatment perspective. This means I have been able to sleep as much as I want, sit in detox baths for hours every evening, cook and eat healthy food as I needed to, and throw every bit of excess cash I make at getting well. That is NOT how I imagine things would be if I had a newborn.

If I relapse during pregnancy, or shortly after, I think it’d be REALLY difficult to have the finances, the rest, the diet and the routine needed to get well. And I come from a family where there isn’t much help. I’m not physically or emotionally close to most of my siblings, and my parents, despite how much they love me, aren’t set up to be the type of grandparents that play an active, daily role in my kids’ lives. And in most the relationships I’ve been in, I’ve been the main income earner… which I imagine predicts I’m likely to be a working mama. NONE of this sounds like the right combination for having the amount of help I’d need to get well.

After losing a couple of guys I was pretty wild about building a life with over this, I recently posed this question to myself: “Under what conditions would I feel comfortable having a biological child?”

And after a little soul searching, I was surprised to find that the answer wasn’t “none”. In fact, if conditions are JUST right, I might actually go for it. But I would want the following:

  • To be damn near symptom free before even thinking of trying (check)
  • A seriously emotionally supportive and empathetic baby daddy who is down for all these risks
  • A joint income or collective wealth that would make it very easy for me to take a lot of time off after the baby was born
  • A network of multiple people (ideally his family) willing to play a for reals, active, daily role in helping us with all of life’s demands post baby
  • A doctor willing to treat me with antibiotics during pregnancy and test the little tyke shortly after he or she is born
  • The willingness to stop after 1 baby if things are complicated or difficult
  • The willingness to stop trying if I am unable to support a healthy pregnancy

So that’s where I’m at on this! I spoke to a doctor last month about getting my tubes tied, and I’ve decided not to do that. I’ll get an IUD instead. I realize that the likelihood of me ending up in the situation described above with enough time on ye olde biological clock left to court one another, get hitched and still have time to make a baby is PRETTY FUCKING SLIM. I mean, I’ve been on about 100 bad dates this year alone… if Prince Charming with all these incredible resources is out there, he’s taking his sweet ass time finding me. BUT, if he somehow does, well… I’ll keep the hardware around to give it a whirl.

The truth is… whether the kids are biological or adopted… the opportunity to build a big crazy family with a partner I really loved and felt safe with, well that’d be an incredible blessing.
baby

Comment below with your thoughts on this trying subject! I’m curious to hear.

Wishing everyone happy healing.

-K

Goal for next phase of recovery: Homeostasis

Well, as I wrote in my 22-month treatment recap post, I believe I am nearing the end of treatment. This month, with a pulsing antibiotic schedule, I am attacking the oldest hibernating forms of Lyme bacteria: Cysts. I am very early into it, but so far it’s gone really well. No dramatic responses, which is great and indicates to me that I’ll be ready to leave antibiotics behind very soon.

As I see the light at the end of the tunnel, I am beginning to think about what my next phase of recovery is going to be.  The most accurate way I’ve thought to say it is that I want my body to achieve a state of homeostasis. A place of optimal functioning where things are going just as they should, and buildups, hang ups and snags in functioning aren’t there to pose risk of future imbalance of any kind.

You see, treatment so far has focused primarily on getting my infectious load down which, for me, was necessary as Lyme and Bartonella (as well as EBV, HHV6 and so many of these other bugs we all carry around all the time) were overwhelming my system. But of course, this isn’t a complete view of everything that was “wrong”. You see, not everyone gets so knock-down-drag-out-sick from these illnesses. It’s far more complex than that.

Why one person gets so sick and others do not, it seems to me, comes down to a few factors:

  • Your body’s ability to detox, determined by:
    • Genetics
    • Real world efficacy
  • Your overall toxic load, from:
    • Infections
    • Organic environmental toxins (like mold)
    • Inorganic environmental toxins (metals, chemicals, etc.)
  • Nutrition in and your body’s ability to absorb and utilize nutrients
  • Emotional health and how you handle stress

Really, “Lyme disease” is a shorthand explanation for a VERY complex and multi-faceted illness that has been more accurately named by Dr. Horowitz multiple system immune deficiency syndrome, or MSIDS. But that’s a real mouthful, so I think most people just call it “Lyme” for short. This is sort of an unfortunate shortcut, as the truth us, most of us have to address far more than a Lyme infection to achieve lasting wellness.

[NOTE: there are more complex things folks deal with like EMF sensitivity and Mast Cell issues and such, but obviously this blog isn’t comprehensive and represents my experience. I’m not even going to try to cover the things I personally haven’t dealt with.]

Long story short, I believe my ability to get well hinges on my ability to address each of these factors. And I think I’ve done a pretty effective job in 3 out of 4.

My toxic load has been addressed both in terms of long term antibiotic treatment for Lyme and Bartonella, ongoing antiviral treatment and also several months of binders for mold I was exposed to in my unfortunate house purchase. There’s no question to me that my overall toxic burden is much lower.

Nutritionally I removed a lot of foods that my body wasn’t doing well with: Gluten, eggs, dairy, sugar, alcohol, caffeine. I was able to get my digestion back online after months of diarrhea and weight loss by using digestive enzymes. And, knock on wood, my gut health has seemed not to suffer at all with antibiotic treatment, thanks for HEAVY use of many strains of probiotics. So this feels well dialed in.

My emotional health is something I’ve been working at for several years, and I can honestly say I am a different person these days. I started with Talk Therapy, which helped me identify some thought patterns and maladaptive thinking I’ve unknowingly engaged with basically my whole life. Then Cognitive Behavioral Therapy (CBT) is where I finally learned to challenge and change those patterns. As a result, I am now a person who lives with a lot of acceptance of things as they are, who doesn’t engage in a lot of self shame, and who can spot and avoid negative thought and life patterns with much more ease. Life is just easier, better and more fulfilling now that I’m not in my own way.

What’s left for me then? DETOX!

Thanks to my work with Bob Miller at Tree of Life, I was able to determine that I have heterozygous mutations on two important MTHFR genes, indicating that I am probably not “methylating” as healthy human beings do, which may be hindering my body’s ability to detox, and causing a buildup of infectious and environmental toxins that cause me to be ill. Unfortunately, as much as I loved his insights, his supplement plan never really got me anywhere. Eventually, I quit using his supplements, and noticed zero change to my health (but an extra $250 a month in my bank account.) Kind of disappointing as I’d had such high hopes.

Needless to say, my work on MTHFR and detox optimization feels incomplete. And it’s always been in the back of my mind that to hang onto any wellness I achieve, I would need to circle back to this. And now is the time!

Unable to find a good MTHFR expert in my area, I resorted to searching the internet for MTHFR practitioners, and found these blogs by Samantha Gilbert, a nutritionist who seems to have a much more functional understanding of MTHFR, identifying folks as over or under methylaters and tailoring treatment accordingly. A little exploration on her website, and it seems she makes diet and supplement plans to help folks optimize the expression of their genetics based not just on what genes they have, but how those genes are actually functioning. Interesting. A 15-minute phone consultation with her revealed that she is familiar with Lyme, and that we align in the belief that improving detox may be my best bet for remaining healthy once treatment is through. A good start.

So, I am going to begin working with her and see where it gets me. My hope is that some nutritional guidance will help me better understand my body, what my specific methylation status is, the ways in which my detox abilities may be falling short, and ideas to help me optimize the expression of my not-so-great-genetics. I am daring to hope, even, that this work may even eliminate the nagging last symptom on my list: Ringing ears.

As always, I’ll definitely keep you posted on how things go! All fingers crossed this is the last piece of my puzzle in my acute fight against Lyme (MSIDS).

Wishing everyone happy healing.

-k

 

Treatment Recap: Month 22

Well, it’s nothing but good news here in month 22. The knee pain and foot pain we thought might indicate a relapse in month 21 has actually turned out to be a cycling related pain! You see, my doc put me back on antibiotics 7 days a week (minocycline, Zithromax and Bactrim), and it didn’t help. What helped was taking a week off of my bike. Then when I got back on, boom, pain returned. Telling. And indeed, a meeting with a bike fit specialist revealed that my uber high foot arches and flimsy shoe choice are leaving my knee to wobbles and putting strain on the whole system. While I’m not a fan of the fact that something is off with my ride, I FAR prefer that reality to the one where my infectious load is sending me backwards. So, YAY!

Month 22 has been pretty freaking awesome. I am back to a level of activity that I barely even dreamed of the last 2 years. I’ve been doing a boot camp class at least 3x a week: Intervals and weights and a lot of cardio! I am even happy to be doing burpees. BURPEES! And on top of that, I am riding my bike at a pace and mileage that is (for me) pretty strenuous at least 3x a week. I have been hesitant to say it for fear of my body revolting against the big goals, but I am finally confident enough to claim: I am training for the Seattle to Portland bike ride that takes place in mid July. SQUEE!!!

Best of all, the sun is starting to come out after what has been THE HARDEST winter in Seattle. I think the blues I’ve been encountering lately are mostly chalked up to the total lack of sun we’ve had for over 6 months. I realize that in years past I was non-purposefully combating this with winter time vacations to amazing places like Brazil, Australia and Belize. But I’ve not done any of that since I got Lyme disease… treatment is FAR too expensive for me to have anything left over for expensive vacations. BUT the intense melancholy I’ve been experiencing has me motivated to try to save some cash for a sunny getaway in winter of 2018. Seems worth the sacrifice.

Minus the aches and pains from the bike, I was pretty symptom free this month. Official list includes:

  • Ringing in the ears (as always)
  • Plugged ears, thanks to minocycline – but oddly this eased a bit when I switched to meds 7 days a week
  • Changes in eyesight

The eyesight thing is a bit of a head scratcher. You see, I have been wearing prism lenses for about a year. But for the last month it seems, the instant I put them on, my eyes become crazy fatigued. They do NOT like wearing the glasses, even though they make everything crisper. So I’ve been going without. In this time going without the glasses, I find that my eyes organically have better, clearer times, and also really blurry times. This is how my eyes were pre-glasses too. This is very interesting to me, as I don’t know what accounts for the changes hour to hour. It does seem to correlate at least a little with my energy levels. Perhaps something thyroid or adrenal? **Shrug** I am heading back to my eye doc soon and hope for some answers. Or at least a better Rx.

For month 23 of treatment, we are heading back to what was SUPPOSED to be my month 22 treatment: Pulsing Flagyl for cyst busting. I’ll do my regular antibiotics 3 days a week one week, then a week of flagyl. Then repeat. This will open up some of the oldest and meanest Lyme cells that have burrowed into cyst form. And the antibiotics will kill them. Since I’ve been infected with Lyme since about 1992, I am a little nervous that I have a HEAVY load of old and hibernating cyst bugs. But I’m excited to begin killing those guys, and am very much hoping this will be my last phase of treatment. Fingers crossed for smooth sailing.

That’s all from here! You can catch me out and about enjoying all this wellness with my favorite past time of all: Physical pursuit.
Happy healing, everyone!

-k

How am I treating? It takes whole-body healing. Here are my areas of focus:

  1. Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Bartonella.
  2. For several months, I used 1 scoop of Cholestyramine twice a day to deal with mold exposure from my ill-fated home purchase in October 2016.
  3. I follow a dairy/egg/gluten/sugar/caffeine/alcohol-free diet. I eat paleo type meals for my “core” meals, but I do also eat things like rice, beans, tortilla chips, tacos, thai food and the occasional vegan / gluten free pizza when I’m dining out with friends.
  4. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, I let go of a romantic partnership that wasn’t supporting my healing, and I made a strong investment in a positive social network (online and off).
  5. In month 3, I did LymeStop in Idaho in addition to my antibiotic therapy. while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later. I did not take any of the LymeStop supplements.
  6. In January 2016, I had my 23andMe results analyzed by Bob Miller. And although  I discontinued his supplements, I had been on them for the entire year of 2016.