witaj, wepa, & hi!
today’s update is about Time. the time between a tick bite & treatment impacts our abilities to recover & quality of life. some of us have longer delays than others and some of us have died without a diagnosis. people of the global majority are more likely to experience longer delays in care.
this year in June at an ancestral skills gathering, i was bit by a tick, found the tick during a tick check before it had time to fully latch, and medics at the med tent removed it immediately. i already knew what symptoms to track in my body as the days started to pass. day 1 i had increased joint pain, but i have hEDS, so that’s just my life, yeah? beginning day 3 i had a headache i thought was my typical migraine. day 4 & 5 i had trouble sleeping, but i thought it was just about adjusting to returning to the city. day 6 it hit me: why this fatigue after an afternoon walk with a friend and then brain fog so thick i can't find the words?
i started doxycycline (along with an entire supportive probiotic, supplement, & herbal protocol) on day 10 following this bite.
six years ago in 2020, i didn't realize i had been bit by a tick. out of nowhere at the end of September, i couldn't do anything. i wasn't employed at the time because of Covid lockdown but all of a sudden i couldn't stand to do dishes or cook, i couldn't run the vacuum in our tiny ass apartment without being 100% completely drained. i had pain all over my body: all my muscles and joints. everything was loud. i felt so anxious. i felt scared, something was definitely wrong, out of the ordinary. i made an appointment with my provider. and then i researched. i read about my symptoms online and came across a lot of names for what i could be experiencing. i read about experiences of people with these varying diagnoses. when i saw my provider sometime in October, i told her my symptoms. she told me it sounded like i had fibromyalgia. but that for a diagnosis that would need to be six months of those symptoms. so she would prescribe me an anti-depressant and i could come back in six months.
i had done my homework. i knew that fibromyalgia is a diagnosis of last resort, basically understood as “we don’t know what’s wrong with you,” as worded by many in chronically ill & disabled communites. i also read that many people only receive that diagnosis after being tested for many other conditions. the drastic shifting in embodied experience of “how it is To Be me,” in early September, and “how it is To Be me,” late September, was so different. i did not communicate any of this to that provider – i didn’t have energy to advocate with someone whose approach to my reported symptoms was to pathologize me with medical misogyny. i left the appointment, did not take the anti-depressant, and asked my therapist for help in finding a doctor for a second opinion.
we looked for a naturopathic doctor who is fat positive. ND’s already have a medical philosophy that is challenging to the medical industrial complex. it is my experience, as a person with white privilege, that they’ve been more curious & better advocates. i think it’s because they have to advocate for themselves to get their own practices & specific offerings covered by medical insurances. they often offer services that are hands-on body work, promote ideas such as food is medicine, and counseling that includes looking at a whole person instead of looking at us as disconnected anatomy chunks or just an overlay of systems being run in a top-down hierarchy by the brain. and fat positive because we know that Drs can just tell us that whatever our health issue is, the problem is we’re fat and the answer is to lose weight. As someone who’s been in a body that’s been categorized as “fat” or “thin” at different times, and experienced relative health & un-health in those body types, i didn’t have capacity to deal with that nonsense.
my first appointment with ND #1 was in November. In the first 60 minute appointment, she asked why i was there. then she went back and forth, weaving, going over my medical history & asking me questions about my recent experiences in the last couple months. One question was like lightning bringing me to attention:
“have you gone camping recently?”
“no.” i hadn’t gone camping. why would that be a question?
“well, have you spent any time outside in natural areas? especially any that are new to you?”
“um, yeah. yes, mid September we were at the coast to escape the smoke from the wildfires. our place has shit windows that they won’t fix & we stayed at a friend’s family’s place on the Washington coast for some days. but i slept in a house.”
“tell me about the time you spent outside. what did you do? where did you go?”
i told her about walking on the paths through the long grass to get from the house to the beach. about our cat escaping outside, hiding under the trees & climbing in after him. she’d asked if i’d found a tick on my body. no.
after all her questions, the physical exam. and then we talked. she said that the first thing she wanted to do, in addition to collecting a standard blood panel, was test me for Lyme Disease. even though i hadn’t found a tick & i didn’t have a rash, i’d been outside in a new environment where ticks live shortly before my symptoms started. she let me know that she’s not an expert on Lyme, and that the antibody tests we have for humans are not reliable or sufficient, but that it’s something to start with before exploring other things, like auto immune disorders.
Lyme tests take 10-12 days for results to come back. i received a message from ND #1 the second week of December. she told me that my Elisa test had one band show positive but the others were negative & the Western Blot test was negative. she explained that some Drs would read this as a negative test & that i do not have Lyme. However, she’s learned in her small amount of learning from Lyme Literate doctors, that any indicator on the current tests available should be taken as a positive. that it is her recommendation to start doxycycline & a supportive probiotic. that she would continue to do some reading to provide me with care. she also started looking around for ND’s in the area who specialize in Lyme, because 3 months of an untreated infection may be beyond her abilities. my infection did turn out to be beyond her abilities...
the r/Lyme subreddit is full of stories of people waiting months, years, decades to receive a diagnosis & appropriate treatment. some never do. Lyme is under diagnosed because capitalism under-funds Lyme research & withholds all types of medical care from all of us for profit. However, Black & brown people in the US especially are left out of Lyme diagnosis & treatment with the usual medical racism & gaslighting with some specific assumptions including, “they don’t spend time outside.”
writing now, i’m crying re-membering the relief of hearing this care provider say she wanted to test, to explore, to try to figure out what was going on. i felt an accompaniment with my experience, my reality. and we all deserve that.
Rhisa Marie Parera, a Black, Puerto Rican woman, is the writer/director/producer of “Your Labs are Normal” available for free on YouTube. Following her on IG the first time i had Lyme helped so much. i can’t find that account now. But her Tik Tok account @negraconlyme is still accessible.
with Love in Living,
zíven
picture description: an accompaniment wall. view from zíven’s sick bed. three strands of string hung horizontally with cards, prints, paintings, drawings, zines, necklaces in various colors and sizes, hanging from the strings. these are notes of love, gratitude, care, camaraderie, celebration, & solidarity. there is a bunch of dried roses hanging above. a tan wicker hat and a green hat with silk flowers hang to the left.
