Happy Lyme disease awareness month!
Look what I was doing two years ago today…
Crazy, right?? I am amazed it’s only been two years. It felt like a LIFETIME going through it. And here I am, darn near remission. I am SO grateful.
If you’re looking for ways to celebrate the month, head over to my new Karla Fights Lyme Facebook page. I’ll be sharing awareness images every day this month that you can easily pass on to your own network.
Sending you all wishes for happy healing!
-k
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.
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.
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.
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.
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 an incomplete one (the autoimmune disease was triggered by untreated Lyme), I believed for a moment that treating Lyme would cure me of MS. When I thought – just for a second – that I had hope of achieving lasting and COMPLETE wellness by treating Lyme disease, the FIRST thing I thought was, “maybe I can have a family”. I instantly unearthed a dream I’d long buried aside.
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:
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 a Lyme infection 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. (Unclear whether those women were actively ill or in remission… I’m guessing actively ill?) Either way, 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 assume that a reduced transmission of Lyme to unborn baby would also reduce the risk of #5 on my list, complications for health and wellbeing of the child. Transmission of Lyme infection to the fetus is what’s thought to cause the higher risks of autism and miscarriage, so prevent the infection from transmitting, and prevent those too. Great.
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 anything I DO pass on.
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 when they are actively sick with the disease. This doesn’t 100% mean it’s transmitting when actively infected folks boink, but it’s likely. 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 if I am still “sick” at all when we are “trying”, putting dad on his own antibiotics 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. 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 need 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. Plus, I have multiple sclerosis. And the risk of having a neurological event in the 3 months after giving birth skyrockets. It’s very possible that even if I have a healthy baby, I will be a new mom, exhausted and strung out already by new parenthood and THEN get sick with Lyme or disabled by MS too. Sound like a lot to deal with? Yeah I think so too.
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. Factor in too, that in most the relationships, I’ve been the main income earner. Bet you a million bucks I don’t have that I’ll 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 really liked over this “no babies policy”, 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:
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.
Comment below with your thoughts on this trying subject! I’m curious to hear.
Wishing everyone happy healing.
-K
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:
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
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:
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:
- Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Bartonella.
- 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.
- 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.
- 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).
- 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.
- 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.
Time is FLYING! I guess I forgot to do a treatment recap for month 20?? Let’s start there.
As you can see by the indulgent emotional post, I had a bit of a hard time in month 20 in two very specific ways. You see, my doc had me start a new drug regimen including minocycline and rifampin.
Minocycline has, in the past, caused me pretty bad intracranial hypertension. And it did indeed cause that again, but to a much lesser degree than it did before. I experienced a much higher frequency of plugged ears is all. On the one hand, this is kind of amazing because in my 2nd month of treatment, only 50mg of minocycline 2x a day sent me reeling with this symptom. And now, I am tolerating 150mg 2x a day just fine. HOWEVER (and it’s a big however) I am only taking meds 3x a week. So the jury is still out for me on whether this is a herx reaction caused by die off of bacteria in my brain, or just a nasty side effect of this medication. Overall, this was very tolerable and not a big deal. It just made it a little hard for me to tell when I am around mold, since plugged ears is my usual tell.
What was harder was being on rifampin. Within just a few days of starting up a pretty low dose, I became extremely tired and SAD. And I stayed that way pretty much the whole month. I thought for sure this must be some kind of bartonella herx, but my bloodwork revealed that it was actually my liver having a hard time processing this medication. So when I went in for my appointment, my Lyme doc had me stop that one right away. No more rifampin or rifabutin for me. My body just can’t metabolize them.
Official symptom list for month 20:
One thing that got much better in month 20 was my muscle spasms and pain. I fully attribute this to going back on 4 pills a day of boluoke, just as I’d suspected in my month 19 recap. If you’re experiencing muscle pain and spasm, I fully endorse this as a good option for relief.
As I started month 21 of treatment, I was feeling pretty good. My doctor had me discontinue to rifampin, continue on minocycline, and add in Zithromax and Bactrim single strength. Continuing to take those meds only twice a day 3x a week, and using some herbs continuously, I felt pretty good in month 21.
Just as I’d done in month 20, I was riding my bike 25-30 miles every weekend. I also started up a boot camp class about 3x a week. And I up my diet a little more. It felt VERY good to be getting back to myself. And being in the boot camp class, especially, meant everything to me.
But the month wasn’t without a little struggle. On my first night of boot camp, I experienced an ocular migraine about an hour after class. Strangely, I had another one a week later that happened nowhere near exercise. I suspect they had something to do with blood sugar dips, as that’s what the two incidences had in common. Strange to me that the long-distance cycling hadn’t triggered anything similar though.
In month 21, I also experienced a couple kind of stabbing headaches on the left side of my head. They felt VERY muscular, and came on and went away very quickly. I suspect by feel of hand that I have a cervical disc out of place and am awaiting an adjustment from my chiropractor. We’ll see if he agrees!
When I initially went into see my doc, I reported being almost symptom free. The headaches and my forever ringing ears were the only thing left on my list, and the headaches seemed circumstantial to me. (Of course, in addition to the plugged ears which I still believe is simply a side effect of minocycline.) I left her office making claims of being near remission with a plan to start cyst busters as my last stage of treatment.
Well, unfortunately, just a couple of days later – before I’d even sorted out my first week of month 22 meds – I started to have pain in the bottom of my left foot again. And in my left knee. And transient pain in my wrists. It seems that perhaps my two months of 3 day a week, small dose medication regimen has left me prone to a bit of a relapse.
I alerted my doctor today and she called a bit of an audible. Instead of the word “remission” our new R word is “relapse” and cyst busting is going on hold. Instead, my 3-day a week regimen of small dose meds will become a 7 day a week regimen. And we’ll try to get everything back in check.
This is frustrating and scary and I hate even writing these words. But I suppose this is just the way of things.
The official symptom list of month 21 is:
I am nervous to begin month 22’s treatment plan. I am especially nervous to go on minocycline 7 days a week. I am nervous that the intracranial hypertension will get worse, that my ears will be plugged on an ongoing basis and that maybe even some of that scary bad vision from the pressure of my swelling brain on my optic nerves will return. I get scared of reporting adverse reactions like that to my doctor, for fear that I’ll be told it’s a herx when I really think it’s a side effect. Le sigh. BUT. This will all be whatever it will be.
I will step back a bit onto more treatment, and hope for the best. One day at a time, as they say. Wish me luck, and swift passage through this little downturn.
How am I treating? It takes whole-body healing. Here are my areas of focus:
- Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Bartonella.
- 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.
- 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.
- 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).
- 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.
- 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.
I don’t know if it is reality that struck me so much as Rifampin. This drug just makes my little heart so saaaaaad. Which, is such a strange place for me to dwell because I DON’T LIVE HERE. I don’t even vacation in this emotion. But here it is just sitting on my chest every day, pushing perfectly sweet air out of my lungs and leaving me gasping for what I just expelled.
“Reality is no different”, I keep telling myself. Everything is just as great and just as hard as it was 2 weeks ago. The only thing that’s shifted is my brain chemicals. And they’ll shift back when this drug is through. And I will be ok. I AM ok. Even if it doesn’t feel like it right now.
Well, I don’t want to jinx anything, but my ramp into the new/old treatment protocol I mentioned in my last blog is going very well so far. I have successfully worked up to 100mg of Minocycline twice a day, which is double the dose I was on in the summer of 2015… and WHAT a difference!
You see, back then, on just 50mg twice a day, I had experienced such bad brain swelling that I could hardly move and my vision was so blurry from the pressure on my optic nerves that I could barely see. Back then I would just lay in bed with Ace and cryyyyyy. After just a few weeks of constantly feeling like I needed to make a run for the hospital, my doc took me off of this drug and I switched to doxycycline earlier than I’d planned. At the time, I was convinced I experiencing normal human side effects and that I’d never be able to take those drugs. But alas, my doc was right… it seems this was just a really bad herx.
You see, this time around, a year and a half of treatment later, I’m back on minocycline with a little brain swelling (I can feel it in my ears and bridge of my nose), but no impact to vision, no headache, totally normal mobility, etc. I am just a little more tired and slow is all. Looking at me, no one would even know anything is going on.
It’s never been clearer to me: LYME TREATMENT WORKS. I clearly have FAR less bacteria dying off this go around. I am SO much closer to remission!
On my Facebook post this morning, my friend Leigh Ann reported a similar experience she’s having and we each started waxing poetic about what life is going to be like in remission… what we’re going to do when we reach that hard-fought stage of life. What a fun exercise in daydreaming.
A few of the things on my list…
Ahhhhhhhhhh…… it feels good just imagining it!! I’ve got a little work to do yet. Tomorrow I start rifampin at 150mg twice a day. 3 days after that, I bump minocycline up to 150mg twice a day. Then I’ll cruise there the rest of the month. Fingers crossed the rest goes as smoothly as transition so far has.
Cheers to everyone out there fighting. We got this!
-kar
Month 19 is a wrap! It was kind of a mixed bag, this one. But overall, a win. I am happy to report that month 19 got me back into a solid routine. With the exception of a couch I’m still waiting for, things are nicely set up at my new, low mold apartment. I have a functional kitchen so I can meal prep again. I’m walking to and from work again, which does wonders for my body and my mind. And, frankly, having a normal routine is making it far easier to stick to my treatment protocol. (It’s the herbs! I always forget to do the herbs…)
Most days this month, I felt like my Lyme-normal self. But I definitely had some spikes of symptoms here and there. Most were, unfortunately, related to increases in muscle pain. On a couple of days, I woke with horrible wrist and ankle discomfort, only to realize that muscle tightness in my forearms and calves were causing it. And on one occasion, I woke with my trapezius muscles on both sides in full spasm and, for the first time in months, had to spend days working at it with the lacrosse ball and cane tool. In the end, I had to run off to an expensive massage appointment, which I haven’t had to do in so long. I got back to functional within about 5 days, but that knot is still there darn it. This is really disappointing to me because, as I reported last month, I thought I’d finally kicked these muscle issues.
Incidentally, this return of these symptoms makes me question what REALLY has been helping me in recent months. You see, I was sure that my doctor putting me on this Core supplement was what fixed it. But, at the same time, my doctor had also insisted I go full dose on Boluoke because my platelet count was SUPER high and she was worried about me having a stroke or throwing a clot – yikes. Well, I ran out of Boluoke a few weeks ago and I didn’t buy more (it’s so pricey!). Sooooo I have a theory that maybe THAT was what was helping with my muscle pain, knots and spasm. I mean, Boluoke helps with blood flow by breaking down biofilm and improving free flowing circulation. The more easily your blood can move through your muscles, the more easily it can flush toxins. And if it’s not flushing and toxins build up, I’ve been told that can cause muscle knots, trigger point pain and spasm. **shrug** Just a theory. But I’m starting back up on Boluoke right away to see if I can get this back under control. And also because my platelet count was again way out of range this month and I really don’t need to have a stroke mmmmkay? Going forward, I’ll be doing 2 pills twice a day because this supplement is SO expensive! (Full dose is 3 pills twice a day.) I’ll keep you posted!
Ok, so let’s do the official month 19 symptom list:
Things I’ve had less of in month 19:
I fully believe the symptoms that went away this month are directly due to me getting out of mold. My most recent bloodwork shows:
This all goes to show, I am on the right path. Life supports that idea too. I mean, this month I was able to ride my bike 20 miles and go bouldering in the same weekend! I went to a hip hop show and danced all night (even had a couple whiskeys). I’ve been managing a big workload at Microsoft with ease. I’ve been going out to dinners and concerts and friends’ birthdays. I’ve even managed a little dating. Oh and I spent an epic day marching in the women’s march the day after Trump’s inauguration. Amazing change from my old life, really, all this activity.
I feel at this stage like I am definitely in my second half of treatment. Probably even my last year. I’m starting to think about strategies to get myself the rest of the way to remission, and I’m making lists of herbs and supplements I’ll continue once I get there. It’s so exciting to even think about that!! I’M ALMOST THERE, GUYS!
For month 20 of treatment, I’ve signed up for a med change. I was motivated to request this for a couple of reasons. One, is I feel like I’ve been plateaued for a while. Secondly, I’ve been on my current combo of meds (Zithromax, doxycycline and Bactrim DS + rotating herbs) for moooooonths. And although I’ve been mixing up the pulsing schedule to keep them on their toes, I have started to fear that the bacteria will adapt to this combo. I don’t ever want to lose this combo, so it’s time to switch off it for a bit. Lastly, I want to deal a serious one / two punch to Bartonella, which has always been a big challenge for me. With that in mind, my doctor has agreed to switch me to a combination of Minocycline and Rifampin. Eep!
I am very nervous about this because both of these meds have been very difficult for me in the past. In fact, they were some of my first meds I was ever on. On Minocycline, I had the worst herx of my life on day 3 of treatment. Pretty standard stuff for your first Lyme drug, but it sure scared me! However, after 19 months of treatment and very little herxing these days, I don’t expect this to happen again. What scares me even now, though, is that I had pretty severe intracranial hypertension that resulted in REALLY blurry vision the whole time I was on minocycline. My doctor always insisted that this was a herxheimer reaction, but it always seemed like a side effect to me, since it never got better even after the rate of bacteria die off should’ve leveled out. If it happens again this far into recovery, I am pretty sure we’ll know it’s a side effect. But gosh I hope she’s right that it was a herx, because that would mean I’ll fare much better this time around with so far fewer bugs left to kill!
When I started rifampin in month 2, I experienced herxing with bartonella-specific symptoms. Makes sense, it was so early in treatment. Even if this happens again, I know it’ll pass. Herxes mean bugs are dying! So as long as they aren’t too severe, I am DOWN for a good herx. What troubles me more about rifampin is that when I was on it again in month 8, I felt very depressed and fatigued, which I suspected was caused by rifampin-induced hypothyroidism (the med disrupts the speed at which my thyroid meds are absorbed, making it tough to stay in normal ranges). I also remember having my period almost constantly on rifampin, since it screws up my birth control, and I am always more symptomatic when I’m on my period. Plus it just stinks to always be bleeding, right?? And I fully expect that those things will happen again this time around.
So yeah. Lots of reasons to be nervous. But I just keep reminding myself that I am sooooo much stronger now than I was a year and a half or even a year ago. And even if I only stay on these meds a short while, it’s likely to do me some good. I’ve got my detox supplies ready. I am starting both drugs at pediatric doses and working my way up slow. Fingers crossed, I’m ready! And I’m hopeful these big guns will give me a BIG step toward a very real and lasting remission. Onward!
Happy healing everyone.
-k
How am I treating? It takes whole-body healing. Here are my areas of focus:
- For a second month now, I have been using 1 scoop of Cholestyramine twice a day to deal with mold exposure from my ill-fated home purchase in October.
- Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Barton Ella. (In month 18, my meds were: doxycycline, Zithromax, Bactrim pulsed every other day + a-bart and a-Tula herbs daily.)
- I follow a dairy/egg/gluten/sugar/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.
- 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).
- 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.
- In January 2016, I had my 23andMe results analyzed by Bob Miller. And although I discontinued his supplements recently, I had been on them for the entire year of 2016.
NOTE: This was written in November, 2015. I’ve found it now, January 2017 in the drafts folder and reading it tugged at my heartstrings. Fighting Lyme was at one point, SO HARD and took so much WORK. My heart was SO broken when my actions of self care were interpreted negatively. The man I’d loved intensely for over 5 years left me over his interpretation of the change in my diet, routines and needs (but “not because of Lyme disease” he swore).
I saw him recently at a hip hop show. With him several paces behind me, I danced all night, I sang my heart out, I drank whiskey even. And I wonder if seeing me in a very different health state than he’d left me in, if he regretted at all the package he’d wrapped me up in back then. If maybe he reconsidered those permanent labels he affixed to my temporary status, for I am without a doubt leading a different life today.
In the end, it doesn’t really matter. My life is beautiful, and healthy, and wellness is FAR less work than it used to be. And the right kind of partner will find himself at home, regardless of my health status, in my heart of hearts… the one my previous partner just couldn’t see.
Regaining your health when you have Lyme disease is hard. And not just financially, emotionally and physically hard (though, those are very true, and all too heavy), for the purposes of this chat, I mostly mean that day to day, the pursuit of wellness is a lot of work.
I prepare all my meals with healthy foods from scratch.
I juice vegetables fresh daily.
I take walks to keep my lymphatic system moving.
I make deliberate time for meditation and cultivation of calm.
I don’t sleep well. So I try to sleep more.
I devote more time to winding down at the end of the day.
I take detox baths.
I sort pills. I sort pills. And I sort more pills.
I visit the pharmacy. Often.
I carve out deliberate “do nothing” hours or even days for restoration after long work days, big events, evenings out or taxing travel.
I arrange my schedule and space things out so as not to “over do it”.
I go to my Lyme doctor appointments.
I go to my primary care doctor appointments.
I go to cognitive behavioral therapy appointments.
I go to couples therapy appointments.
I go to lymphatic drainage appointments.
I even go to chiropractic and PT appointments.
This list is a LOT of work. When I was first diagnosed, and getting used to this new routine, it felt like a full time job. I mourned the losses brought on by all this additional responsibility and heavy necessity. Even still, sometimes, this load can feel downright oppressive. That’s a fair and very real reaction to my daily life with Lyme.
But most of the time, these days, I view these as necessary investments in my wellness. These are gifts I am giving to myself, to my body, to my mind, my spirit and my immune system. And they’re working. I can feel the results of these activities and I’m getting healthier month after month. Importantly too, I can feel the results of skimping on them whenever I don’t make these pursuits a priority.
Making this much space for me in my own life… it’s not easy. Mostly what’s hard about it is that it means saying no a lot more than I used to. No, I can’t go to the holiday Christmas party after working a 10-hour day. No, I can’t make it to that meeting across town at 7am after I worked till 6 the previous evening. No, I can’t go to that birthday party AND my family’s Christmas party all in the same day. No, I’m not strong enough to withstand a day of international travel, a day of birthday celebrations, two 12-hour work days and then still have the bandwidth to be a graceful, capable full time caregiver to a loved one in need for the next several days.
And that SUCKS. It feels awful. In my worst moments, I feel like I’m failing all of the time at everything. But in my better, truer moments, I know I’m doing my very best. And it’s good enough. It has to be good enough… because it’s all I have. I’m giving everything I have. A lot of that goes to myself, because it has to for now. A lot of it goes to my job, because it’s funding the whole treatment effort (not to mention my life). And, with as much as I have leftover, I still give to those close to me.
I know that what I have leftover to give to others… it’s not always enough for them. And that’s ok for them to believe, to say (with kindness), even for them to be upset about. I’m limited and I know that. I can’t meet everyone’s needs as a daughter… as a friend… as a partner. Not all of the time. And as hard as that fact is to accept, I do accept it.
What’s painful for me is the interpretation some people make of my inability to meet their needs. For the first time in my 32 years, as I set these important routines and self-care goals in place, I’ve heard accusations of being “selfish” and “controlling”. Those words are shocking. Those words break my heart. They break my heart because those words describe actions of ill intent and ugliness. They accuse me of demeaning the other… of not seeing their value and their worth. Those words accuse me of just not wanting to give them everything they need and desire. No. That is not what is happening in me. I don’t relate to those words at all. And, honestly, I find it so sad and disappointing, even wounding, that anyone who knows me well could interpret my limitations… my diligence in this quest to get well… in such a dark light.
In those moments, I remind myself that what someone else thinks of me is, at the end of the day, none of my business. If they’ve been given ample opportunity to see the heart of me, and instead see only their interpretation of my intent, that’s their choice to make. I have to respect that that’s their choice.
I am really pretty fortunate. The majority of people in my life have responded to my struggle positively, with curiosity and with empathy. I’ve formed some really strong friendships with the people who’ve made those efforts. And frankly, the people who went the other way… well I guess I’m probably better off without them. Or, I will be as soon as I get over my broken heart.
karlafightslyme 