the halfway pep talk.

June 26, 2012

after awhile of feeling less enthusiastic about my treatments, less willing to push through, questioning all my instructions, and dragging my feet through my detox protocols, i may have turned an emotional AND physical corner.

the last five weeks have left me feeling like a stack of chipped plates ready to be chucked off of a bridge into the air until they each crash into a rocky ravine. i’ve felt like a pile of porcelain shards whose only thing to look forward to is the sound of the train as it thunders above me. after this treatment cycle, i can admit that a big part of me wanted to give up. the catch phrase, “don’t leave before the miracle happens,” kept popping into my head. sigh. right. i know i have to stick this out, but i’ve wanted to transform that phrase into an armory of water balloons and stomp them all dry. i was suffering a different, unpredictable set of symptoms every day. honestly, every single day i woke up, i was plagued by a new rash, a migraine headache, seizures, chattering teeth and muscles in total agony. when i stopped taking them on just one day at a time, i was completely overwhelmed, physically, mentally and spiritually. i don’t know how i could have moved through it if i hadn’t been sleeping 70% or more of the time. i know that giving up is not an option, so when i went to see dr. j yesterday, i really, really needed some reassurance. i needed to know whether this path was actually working or if i was just rationalizing and making all these symptoms into herxes.

like all appointments, it began with reviewing my current medications and supplements and running through my symptoms. i’ve streamlined these processes by making spreadsheets. my medication sheet lists; the name of the medication, the quantity of each pill, the dose i take and how often, how many refills i have left, when i should fill it next and whether or not i need a new script. the supplements chart reads similarly, but i have a category for the brand, the source and for how many bottles i need/have. my symptom charts are broken down by treatment weeks, so i fill out a 3 page list of symptoms each week (i made my own symptom list). at the end, i summarize which symptoms were most prevalent and which ones were new. you can scan across the weeks and see if my cognitive abilities were not impaired, or, if they were, were they low, medium, or high? i also write little notes about things like which joints weren’t working or the duration of my spinal pain. these documents make it really easy to discuss medication changes and anything that came up during the cycle that needs talking about. i have to say, this system works really well. without it, i couldn’t have remembered that during week two, my speech was slowed and that i was stuttering.

then i get hooked up to a gravity bag of a new iv antibiotic, one i’ve never  taken before. we have to test it in-office to make sure that i don’t have a reaction to the drug.

when i talk to the doctor about what’s been happening for me during the past few weeks, he offers me the medical names for the symptoms and explains why i’m experiencing it. whether or not i can remember exactly what he’s told me, that’s a whole other problem. my notes often trail off as i lean forward, fascinated by how complex this system of illness and treatment is. this is my favorite point of every visit. i want to know why my body has been getting cold, my teeth chattering so violently that i have to stuff a rag in my mouth so that i don’t chew up the inside of my face. why do i start shaking so hard that i can’t see, i cramp and seize and then sit under a heating blanket until it subsides. this awful experience is due to an excessive toxic die-off that interrupts normal autonomic nervous system (ANS) function. i’ve learned that a lot of my symptoms are related to ANS dysfunction, which will improve as we slaughter and scatter the spirochetes. i also learned that many of the headaches that i’ve been having, the ones that start in the back of my neck and worm their way into my head and feel like they’re pushing my eyes and temples out of my skull, are cervicogenic. after discovering a bit about this type of debilitating headache, it’s no wonder that regular painkillers don’t help at all. the nerves are so frayed and irritated that they refuse to stop sending pain messages to my overly busy brain.

the winner of all new knowledge gained at this appointment was about a condition called acrodermatitis (ACA). basically, the bottoms of my feet started to peel (i hate feet, so this is actually uncomfortable to write about). it was like athelete’s foot x 100. i couldn’t scrub, loofah, or pumice it off. i just kept putting coconut oil and shea butter on it and hoping that i would soon be able to wear slingback shoes again. when i told dr. j, his face brightened. he told me that this was the only “test” that definitively proved the existence of lyme disease in a patient.

“… This therefore establishes ACA as a part of the natural history as well as a late manifestation of untreated cutaneous Lyme disease in the United States…..A heightened awareness of this manifestation of Lyme disease may lead to the more frequent recognition of its occurrence, avoidance of a delay in diagnosis, and the development ofappropriate therapeutic intervention.”

you’d think i’d have a slightly different reaction to this news but i was filled with relief. i’ve written about how i’ve been taught to question the existence of lyme in my own body, how after years of being dismissed and relegated to the world of phsychiatry for any new answers, that i would still, blaring lyme symptoms or not, wonder if i was making this all up. my bartonella infection shows up with rashes. i have highly positive serology for babesia. but lyme? i have one band marked, one lonely indication of the presence of a spirochete flagella. and now, with the freshly skinned soles of my feet, i finally have the information that i needed to prove to myself that i really have chronic lyme disease.

after yesterday’s appointment, being told that i’m actually coming along with my treatment and that even though the first half of the iv treatment has been really rough, it should start to get easier. for those of you reading this who are approaching treatment or who are looking at options for how to proceed with your own brand of fighting lyme and the co-infections, please know that my experience and the amount of pain i’ve had are not common fare. i’ve been assured by my doctor (and met plenty of people who didn’t have all of the strange, uncomfortable, and painful rashes, the seizures, the cognitive shut downs) that it’s not really normal. each person’s treatment is different and chances are, you might have some of the same herx reactions, but you’re experience will not be just like mine.

i’m ready for blue skies and i’m motivated to see this iv antibiotic treatment through.


i’m sitting in a hospital bed, hooked up to a gravity bag of saline, trying to educate every single hospital staff member that all the severe and crazy symptoms i’m having are just a part of this process of eradicating lyme, babesiosis, and bartonella. i’m trying to tell them about how the seizures are sometimes completely minimal and sometimes, they’re bad, but they’re never tonic-clonic and i never lose consciousness. they always come on slowly. i know when it’s going to happen. are my symptoms painful? yes, but i’ve lived this way for so long that this is normal for me.

i am trying my hardest to get out of here, if i don’t have an infection in my central line (that’s the only reason i’m here).  i’ve been having some fevers ranging from 100-103.3. my white blood cell count was incredibly high and i got a frantic call from my nurse insisting that i go to the er immediately to have a blood draw to rule out sepsis. i think i wrote before about how when i needed to get blood drawn from my central line, the only place that would do it was an er and i’ve have to be admitted and go through the whole hospital ordeal. well, that’s what i’m doing now. after watching this nurse take blood from my line, i can’t believe that i can’t just do it myself. they basically push saline into the catheter, then pull back until blood enters the chamber of the needle-less syringe and then they attach something to the end of the catheter that causes blood to fly out of my body and into these bottles that look like they should have japanese condiments in them. so the big mythical blood draw? ppfffffhhhht.

this second half of the 6 week treatment plan is brutal. every time i’ve finished my infusions, i’ve started to get cold, my teeth chatter, and my muscles move incessantly. the shaking gets so bad that i have to put a piece of cloth between my teeth to keep from biting myself. then i climb under a heating blanket turn it on high and shake for 45 minutes. the suddenly, it’s over. the remnants are just spiking fevers which also go away over the next hour or two.

i don’t really want to tell my doctors what’s going on, which is stupid, i know. but every little thing i report they want to check out or eliminate a medication and stop my treatment. i never know what to expect, how i’ll feel, what tomorrow will look like, so i don’t want to stop. i want to soldier through.

on the real, i want to keep my working vacation plans. this may sound small and silly, but i need things to look forward to and if they keep changing my treatment, i lose the the trips i need. i’m a hermit and i’m in constant pain and every once in a while, i need to be with my friends, laughing, loving, smiling. i need that and this is why i’m concerned. i work at a women’s music festival every summer (since i was 18) and that’s where my chosen family is. i need them, i need the music and i need the black skies filled with shooting stars. i need that feeling of belonging because right now, i belong to disease, to gravity bags of antibiotics, to constant monitoring and temporary torture and isolation. i want to drive across canada. i want to take that deep breath when i pull onto the land, my car overloaded and my butt aching from sitting for so long. i want sweaty hugs (though i much prefer not sweaty hugs). i want dinners cooked by friends, jokes, to fall asleep in my tent and yell my “good nights” to my neighbors.

i want a schedule i can count on, but i have an unreliable body.

in the room next to me, an insensitive nurse (one who, just moments ago, flexed his muscles at me and told me i looked good in a super pervy voice), just callously delivered news to an old man. this is all he said, “with as long as she went without oxygen, 20 to 30 minutes, it’s almost certain that she will have severe brain damage.” then he turned and quickly walked past my room. a few minutes later, i heard the man quietly weeping, sniffling and saying over and over, “no.”

there’s always something that puts everything in perspective. i wish that i could ease the pain of someone losing their partner. obviously, i’m no god and i have no idea what the plan is for him, for me, even with my lyme treatment.

back online.

June 7, 2012

it’s kinda hard to pick up the story when you’ve let so much time pass. clearly, i’m long-winded with the retelling of events, so summarizing the last two to three weeks is going to be hard for me.

i fell off the map and it had pretty much everything to do with the way my last post started.  having just started a new cycle, i think i compared my brain to a melted popsicle. i completed two weeks on-treatment and i’m in the middle of my weeklong holiday. i’ll restart the same treatment schedule on monday… and i am dreading it. i haven’t looked forward to any treatment, save my very first one (because i wanted to put this grand plan in action). in any case, i started off this cycle with a truly unfortunate sunburn that even encompasses all the places where the sun don’t shine. this, being the fourth different type of rash that i’ve had, caused dr. j and his team to sideline me again. but by the third treatment day, i had harassed them into letting me keep the schedule, and they came to the conclusion that the burn was just more herxing. for the rest of that week, other than the burn, i felt great, probably the best i’ve felt in months. the timing of feeling pretty good was perfect. my body and mind actually got to leave my house, go to the city for five days, go to a dear friend’s wedding and dance badly with some of my oldest friends. i’m not very coordinated anymore, which is a little humbling.

but the rash held fast. people have been asking me where i went on vacation. is every one of my new rounds going to consist of a burn/rash of some sort? i’m not a betting girl, but i’d venture to put some money that it will. i figured that the sunburn would go away and that would be the end of that herx reaction. that was not the case. pretty much everyday, i get a new, itchy sunburn and the old one starts to peel away.  five days off drugs, the peeling is still hitting me but the daily burns aren’t quite as bad. give that another three days and i’ll most likely be tending to a new batches of invigorated burns.

the worst of my new symptoms are neurological. my balance became teetery. i have been stumbling into walls, running into tables and my iv pole, tripping over dogs and shoes. i started having constant trouble remembering things, like names, words, and where i was driving to. then came the stuttering and the inability to track conversations. then my speech slowed, like someone who suffered from a mild stroke. i couldn’t type because i’d hit the wrong keys. i was misspelling every other word and not even realizing that i’d done it. i could hardly send a text, even by dictation. i have always felt like words were my strongest suit. it’s hard to describe what it feels like to not be able to access them. it’s not just frustrating, it’s excruciating. it erodes the way i view myself and wind up feeling totally useless. this is the reason i haven’t written in so long. when so many days of ups and downs drift by, trying to write in a manner that could be anything more than a play-by-play, seems beyond my grasp.

right now i’m hating the lyme treatments almost as much i hate lyme disease itself. my muscles are tense and painful to move. i’m itchy everywhere. i’m tired all the time. my brain feels broken. having had the gift of a weekend, spent celebrating with some of my closest friends from around the country, feeling energetic and mentally on-point, has made these days, the ones that i can hardly get through, harder to endure. i was in tears trying to get my sweater off last night. the nerve pain my back was so debilitating that i couldn’t move my left arm.

i know that i need to stay this path. i know that i will, but a piece of me wants to throw in the towel. the voice that says “this is unbearable,” gets louder and louder. i feel like i’m not taking the best care of myself anymore. i rarely eat a meal because i don’t have an appetite and yet i’m somehow gaining weight. most of my pants no longer fit me. it’s a good thing that it’s coming into dress and romper weather or i’d be like my partner who does not believe in the top button of his pants. this hasn’t been a terrible round of treatment, not in the day-to-day affairs, but it has felt soul crushing, like i’ll never be free of this and will always wonder what tomorrow is going to feel like. i feel imprisoned in my house, in my body and i feel like i have no choice but to push through one day to the next. no matter how much i feel like this is “forever,” i don’t believe in forevers and i hate to pit logic against emotion…