my undies are in a super bundle. i feel like i’m swimming in a giant, sweaty puddle of stress, which isn’t helping my physical or psychological states at all. i have a massively anticipated hearing, regarding my financial assistance and health insurance, coming up this week and i’m also getting ready to go out of town for two weeks. traveling is, all by itself, enough for me to work myself into a tizzy. whenever i have to go anywhere, be it for a medical out-of-town day trip or a vacation, the back of my mind flips on a switch that starts the hyperdrive anxiety going. the herxheimer reaction has picked back up in the last few days and i’ve been feeling sore, tired and achey. since i can’t really write about my healthcare review, i’m going to dive into the troubles of travel as they relate to some of my medical conditions. this is a two-part entry. 1) to bitch. 2) to bitch so that i can let go of my fears and get on with the business of living.

i’m driving to michigan, a 17 hour trip without stops. last year, this same drive took me an extra 12 hours because i had to pull over every 1/2 hour to sleep. when i was 16 and would drive during the day, i’d get really, really drowsy. i attributed this to boredom. i’d blast my music, roll down the windows, sing at the top of my lungs- anything to help me clock miles. when i was 19, my doctors at the mayo clinic informed me that i was actually allergic to the sun, the result of which ranges from a rash to catalyzing a full-blown lupus flare-up. i know a woman with lupus who almost died after spending the afternoon on a beach. over time, this sun reaction has worsened (i even get sick if i’m under florescent lights for too long). for me, it’s not just lupus related. my severe reactions may be sparked by babesiosis as well. the majority of my time in the summer sun goes like this: i get tired. this fatigue turns into slow narcolepsy and i can’t keep my eyes open. my superficial fascia (connective tissues overlaying muscles) begin to contract, leading to my neck and shoulders becoming a solid mass of knots. this increase in tension gives me a headache that almost always turns into a migraine headache. i then either pass out or go rest in the shade and spend the next 3-24 hours feeling like i’ve been tumbled around in a commercial clothes dryer. if i’m driving, i wear 100+ spf sunblock, a gigantic sunday hat, thin layers of uv protective clothing, sunglasses and the stink of anticipatory fear. if i’m a passenger, you’ll find me scrunching up into whatever shade i can find, falling asleep under the cover of anything that can block the sun’s rays.

while i’m gone, i won’t have access to the foods i eat, which proves itself as another hurdle in leaving town. according to some tests, i have celiac disease, an autoimmune disorder that inflames the intestines and prevents the body from pulling necessary nutrients from food. i say “according to some tests,” because, like many of my conditions, my bloodwork inconsistently shows the required markers for diagnosis. either way, diagnosis or not, i can’t eat foods containing gluten without having a reaction not so dissimilar from my sun allergy. it’s not quite as severe, but it’s not enjoyable either. beyond the celiac diet, i can’t eat soy, corn, oats, nightshade veggies, any grains other that quinoa, amaranth and brown rice, dairy, all meats (except chicken and fish), eggs, coffee, citrus fruits, strawberries and a number of other fruits, sugar, honey, etc.. when you’re in the woods, like i’ll be, and all your meals are being prepared for you (which is AMAZING if you can eat them), these food limitations come equipped with some hefty anxiety. okay, so, i’m worried i’m going to starve. i’m not, but i’m still telling myself i’m going to. time for some cognitive therapy.

i’ll be “camping.” i use the term lightly, since i used to be what i would call a “real camper,” (read: miles away from your car or any car, for that matter). i’ll be sleeping in a gigantic tent for 12 nights. the tent is bigger than a lot of my former brooklyn apartment shares, so it has that going for it. i have two stacked inflatable air mattresses, a memory foam topper, and an assortment of pillows to help me prop up whichever arthritic appendages may ail me. i also bought a tent fan this year since it seems like it’s going to be a scorcher. but no matter how slick my woodsy accommodations may be, sleeping away from my tempurpedic mattress is rough on my system. in addition to my severe insomnia, my joints and muscles always flare at night and being in an environment where i can’t control the temperature or humidity often makes for a bad night’s sleep. my costochondritis, a condition that causes severe, sharp pains in my sternum and ribs, makes it tough to breathe, especially when i lie down. i use lidoderm patches, a thin bandage laced with lidocaine, to numb the center of my chest and usually, that gets me through the most intense stretch of chasing the sandman.

finally, the social interaction for me is a massive challenge. i love the people that i’m going to see. i cherish them, and for many years, taking this pilgrimage has felt like going home, but in my real life, the life i have here, most days i only see my partner, a doctor, my physical therapist and possibly a cashier. even when i’m feeling my worst, i usually look totally normal. the most common reaction i get when i tell people that i have a handful of autoimmune diseases (and now lyme and babesisosis) is “well, you look great!” while i’m grateful that i don’t appear on the outside how i feel on the inside, it makes social exchanges awkward for me. i spend so much of my energy trying to portray myself as fine, healthy, and collected and that’s draining. as hard as i try to remove the facade, i can’t allow myself to visually embody all of the things that are happening on the inside. it’s this huge front that i’ve put up and i don’t know how to dismantle it. the day before yesterday, i was talking to a woman who has some of the same autoimmune diseases as i have. she said to me, “when i feel bad, you’ll know it, because i’m going to look great. you can tell i feel okay today cause, well, look at me!” she was wearing a baggy t-shirt, shorts and sandals. “me too!” i squeaked. “that’s exactly how i am!”

so there. i said it. i’m scared. i’m worried my body won’t hold up for the drive out, that it won’t sustain me while i’m there, that i won’t eat a balanced diet, and that my social anxiety is going to overtake me, but the truth is, these are just fears. i’m going to walk through them and allow myself to go and just be.

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i’m afraid that i fall into a specific category of patient, the kind who, despite not having the financial resources, is so desperately seeking answers, that she will pay money she doesn’t have for magic bean cures. i once devoted a couple of days to researching whether or not a saladmaster pan set would help balance the scales of my pathetic health. a whole set costs somewhere in the neighborhood of $3000. in the end, i decided not to go into debt over cookware.

this past week, i shelled out an almost embarrassing, definitely staggering, amount of money to see a doctor who specializes in environmental and nutritional medicine. i’m trying to trust that this path will lead me somewhere good. actually, i do have faith that the antibiotic treatment in combination with all my non-allopathic treatments will guide me to a place of improved wellness.  i hope that it’s my lack of understanding of the science behind this medicine and not the science of the medicine itself that’s missing (in regards to this doctor’s practice, not to environmental med. as a whole).

environmental medicine, put very simply, is the idea that all illnesses have an underlying cause and that the things we eat, put on our skin and breathe in all have direct effects on our bodies and our health. i think most of us, when we think about how toxins or exposure to toxins can seriously affect the functionality of our bodies, go to erin brockovich-like extremes. of course, there is increasing awareness about hormones and antibiotics in the meats we eat, pesticides on our veggies and fruits and contaminants in our drinking water, but to the average person, this information doesn’t translate as critically as it should. when i was a kid, my parents took me to activist events fighting for farm worker’s rights. i met children of migrant workers who had birth defects that were a direct result of the pesticides used on the crops their parents had been harvesting. i understood that direct contact with these pesticides had a potentially crippling effect on the people who worked with them, but the connection that i really failed to make was how damaging these chemicals were to everyone who came into contact with them, not just the workers who picked the fruit, but the consumers who ate them. my parents made organic choices for me, but by the time i made my own food decisions, the prohibitive high cost was king. i ate what i could afford.

four years ago, i overhauled my system, top to bottom. i quit the bad things and readopted the good things. i structured my budget around clean, healthy food (the majority of my income goes to pay for food, doctor’s co-pays, supplements and medications.). i changed not only what i was consuming, but how i cooked  it. i learned about food, about how to get the most nutritional value out of what i ate and how to prepare whole foods. hell, i even had to learn what whole foods really meant. making these changes facilitated just a small shift in how i felt. feeling more connected to my food and having a better understanding of that relationship was important, but it wasn’t a cure, so i continued to seek more answers. last year i began seeing a functional rheumatologist (functional medicine), who started me on a hefty course of supplements and a strict elimination diet (“a dietary program designed to clear the body of foods and chemicals you may be allergic or sensitive to, and, at the same time, improve your body’s ability to handle and dispose of these substances.”). after a month on the diet, i felt better and began the process of reintroducing foods. there were many things i discovered i could no longer eat, but with a lot of foods, i didn’t notice a significant reaction and so i kept eating them. within a week of finishing the diet, i started to feel just as sick as i had before i started, if not worse, and so my doctor advised me to use the elimination diet as my permanent diet. then she prescribed a liver detoxification program. during the liver detox, i felt terrible. i thought i’d feel better when i finished it, but even after two months, my body was still filtering out the toxins and i still felt sick. it took a long time for me to stop feeling the effects of the cleanse.

my new nutritional and environmental medicine doc, after spending two hours performing diagnostic testing to determine my viral load, allergens and food sensitivities (using a machine i think i saw in a lab in the video game fallout 3; i.e., fascinatingly archaic looking and vaguely scientific), gave me droppers filled with homeopathic liquid concoctions that i take 2 and 3 times a day, molybdenum to help balance the sulfur levels in my liver, doubled the dosage of EPA/DHA that i was already taking and a list of fifty or so foods that i’m not allowed to eat. having long since given up the delicious foods of my past, the staples in my daily diet that  i was most disappointed to sacrifice were coconuts, apples and hemp. the old me would have laughed at current me for pining over hemp milk.

don’t get me wrong, i don’t think that this medical path is quackery, i simply don’t understand it. for now, i just hope i didn’t buy more magic beans.

my writing week off.

July 16, 2011

it wasn’t really  much of a week off at all. my partner has pneumonia and infections in both ears. it’s been a long two weeks for me, but even longer for him. he seems to alternate between getting worse and staying the same, but isn’t getting much better.  i’ve been trying to take care of both of us, which is, at times, laughable, but mostly just difficult. he’s not used to being so sick and out of commission. i remember how that first felt, how it feels when my physical limitations are further restricted, and it’s hard to watch someone be that ill and only be able to minimally reduce their pain.

my brain hasn’t been functioning very clearly since i started my antibiotic treatment, so i haven’t felt much like writing. everything i’ve written seems too dramatic for public viewing, so i took a week-long pass on this blog. i’ve been experiencing strange symptoms that i think can be attributed to the bacterial die-off. the first five days of the treatment were painful (though not excruciating). it was as if my body was rapidly cycling between every symptom of the infection. the last few days have been easier but i’m feeling generally exhausted, incredibly lethargic, and fairly irritable. since about the 3rd day of antibiotics, i noticed swelling in my feet. they’ve been reddish purple and hyper-sensitive. i wonder if this is where the dead bacteria are settling. i think because i have raynaud’s syndrome, a condition that limits blood flow to my extremities, it may be harder for my body to eliminate the toxins. i’ve been getting the chills… but just in my right arm and then my arm will go numb for a few minutes. it’s a bizarre feeling, the localized chills. i’ve had a lot of tremors and some migraines but a lot of the more intense issues, for now, have faded to a level that i can tolerate pretty well.

i apologize for the incoherent, grocery list of this phase. i’m just not feeling up to the amount of energy it takes me to write a halfway decent entry, but i didn’t want to fall off the map completely. hopefully, my boo will start to feel better and i’ll have a little more energy to put towards documentation.

the herxheimer effect.

July 9, 2011

for the past week or so, i’ve been a bit clumsier than usual, breaking things, dropping stuff and bumping into stationary objects, leaving small cuts and bruises all over my ankles and legs. since i started taking the antibiotics, this butterfingered bumbling has increased. i dropped my phone into a pan in the sink. i opened a cupboard door right into my face. fun stuff, really. in our conversation about how my body would react to treatment, my doctor used the word herxheimer, abbreviating it to “the herx” and turning it into a verb, herxing, a couple of times. i didn’t bother to ask her what it meant. i thought i inferred the basic meaning. now, on day 3 of antibiotics, i have no questions as to what she meant. i’m 100% certain of what the herxheimer reaction is.

technically speaking, the herxheimer effect is a phenomena that occurs when toxins and endotoxins are released into the body as (in my case) the bacterial spirochetes die-off. the antibiotics spur a spirochetal killing spree that pumps toxins into the body faster than the body can dispose of them. this excess of dead organisms can manifest as an expansion of already occurring symptoms and leave otherwise healthy patients who are receiving treatment feeling like they have the flu, complete with fever, muscle aches and pains and fatigue. i’ve heard other lyme disease patients describe it as having their worst days stacked backed to back. so very, very thankfully, this is not anything like my worst days, but it’s not a walk in the park either. for people with autoimmune disorders as well as tick-borne co-infections, the herxheimer reaction can be agonizing and even lethal. this is the reason why my doctor has prescribed a less aggressive treatment for my lyme and babesiosis. i’ve also been instructed to “back-off” the antibiotics if my reactions become unbearable. in some cases, the herx can last as little as three hours to three days. for someone with a long undetected infection, the herx can last much, much longer. i’ll be taking antibiotics for no less than four months, during which i could experience the effects of the die-off at any time.

i want to do everything i can to help speed this process along without doing damage to myself, so i started researching how people deal with herxing. since the exhaustion is really starting to set in right now, i’m going to take a super lazy way out and tell you that you can find some alternative solutions here and here. in terms of how you can assist your systemic cleansing, it turns out that it’s not so dissimilar to other types of detoxing. drinking lots of purified water to flush your system and taking frequent showers to wash toxins off your skin are some of the more obvious solutions. i brushed my skin (god, that looks strange written). i used a whole-body bentonite clay mask yesterday to try to draw some of the poison out. i made organic kale, spinach, ginger and carrot juice in my omega institute juicer (yes, it tasted terrible). i took pain medication for my constant myalgia (muscle aches) and my joint pain. i rested a lot and reminded myself over and over that this is just a step on the path to my wellness. it’s already been a long road. i can handle a few extra miles.

the first round.

July 7, 2011

now that i’ve been sitting in front of a blank screen for the past half-hour, all three of my furry tormentors are soundly slumbering. an hour ago, my eyelids anchored by invisible lead weights, i laid on the couch and tried to nap. the previously sleeping dogs started racing around like a live action mario kart. i took my groggy self to the bedroom. the cat interpreted this move as an impromptu, midday slumber party and chatted loudly while braiding my hair (his version of hair braiding is more like mashing potatoes). i’m feeling profoundly tired today but i guess i’m not meant to sleep just yet. maybe it’s the meds.

yesterday i woke up feeling like i was coming down with the flu. i cancelled physical therapy and decided to put all my energy toward getting to my lyme doctor‘s office for her walk-in hours. i wanted to know more about the results of my infectious disease blood work and the positive reaction for babesiosis. she walked into the room already mid-sentence. this is a quality that i like in her- she’s thinking and actively engaging with those thoughts and she wants her patients along for the conversational ride.

so what exactly is babesiosis?  according to Medicine.net,  babesosis is “an illness caused by the parasite Babesia which is transmitted from animals to humans by ticks. In the US, it is typically contracted in the Northeast or Midwest — in southern New England or New York State and in Wisconsin or Minnesota. The signs and symptoms include fever, chills, sweating, myalgias (muscle aches), fatigue, hepatosplenomegaly  (enlargement of the liver and spleen) and hemolytic anemia (anemia due to break-up of red cells). Symptoms typically occur after an incubation period of 1 to 4 weeks and can last several weeks. The disease is more severe in patients who are immunosuppressed, splenectomized (lack their spleen), or elderly. It can cause death.”  this is an incredibly limited explanation but i’m finding it difficult to locate a thorough reference. i was not recently infected, so the notion that it can last weeks is, in my mind, ridiculous. my lab work, processed by quest diagnostics, shows a significantly high titer (the presence of detectable antibodies as they are increasingly diluted) for the test for babesiosis AB IGG. it also reads: INTERPRETATION… PAST INFECTION. i grew up in wisconsin, went to college in minnesota and now live in new york. clearly i fit the regional profile, but this infection doesn’t begin to cover the symptoms i’ve been experiencing. i am one of those “immunosuppressed” patients and as such, am prone to more severe effects than the average tick bite victim. my current tick borne illness diagnosis is both b. burgdorferi and babesiosis. next month we’ll test for mycoplasma, but like all of these vector-borne diseases, antibodies don’t always show up in the lab work.

my doctor prescribed me two different antibiotics, azithromycin (the same things as a z-pack but instead of a 5 day course, i’ll be on it for at least 4 months) and mepron. due to the fragile state of my body, we’re starting with just the azithromycin. my doctor thinks that the azithromycin will help kill off the b. burgdoferi as well as the babesiosis, but neither annihilation will come swiftly. she warned me again and again that “going faster doesn’t go well with treatment,” and related a story about another patient of hers who upped his treatment regime only to land himself in the intensive care unit at the hospital. i was prescribed nystatin to help prevent fungal infections, a perpetual problem with long-term antibiotic treatment and i’ve got to up my doses of probiotics to maintain some positive gut flora. she briefly talked to me about cutting down on sugars and starches in order to help my system stay healthy. fortunately, last fall i gave my diet a serious overhaul that already accommodates these requirements. i’ll write more about the food stuff later.

thank god for my (new-ish) prescription coverage because the azithromycin would have cost $195. think that’s expensive? the mepron retails for $1237. i’m really not excited to find out whether or not my insurance will cover that more than this one time. the nystatin runs a hot $54 and my probiotics aren’t cheap either. fighting lyme disease is not for the uninsured…

babesiosis.

July 5, 2011

i was pulling out of the greyhound station in a car filled to the brim with emeco navy chairs (did you know bus lines are the cheapest way to ship light freight? i didn’t.) and i got a call from my lyme doctor’s office. my infectious disease panel came back positive for babesiosis, or babesia, which was actually kind of surprising because my doctor had told me that it was highly likely we wouldn’t get any substantial information from the blood work i had done last week.

babesiosis is another deer tick transmitted infection and from what i can figure of my early investigations, it’s just more of the same lyme controversy. according to the CDC, it’s really no big deal. if you read some support group sites, people have been unsuccessfully battling this bug for upwards of a decade. there’s tons of contradictory information about the efficacy of treatments and whether or not early detection plays a role in the severity of symptoms. you’re shocked, i’m sure.

“blah, blah, blah, cardiac failure and death, blah, blah.”

right now i’m almost amused, but that might be because i don’t know anything about this.

part of me wants to postulate what this all means but i’m going to try and hold off. the small amount of research i’ve done this evening hasn’t awarded me with much knowledge. i think i’m going to try to go to my doctor’s walk-in hours tomorrow afternoon instead of waiting for my appointment next week, and hopefully by this time tomorrow night i’ll have more than just the catch phrase, “the malaria of the northeast,” in my head.

the honesty panic.

July 4, 2011

i’m experiencing what i can only really conceptualize as “the honesty panic.”

i kept linking and then unlinking this blog to my facebook account. i  finally decided to tether the two together, the result of which is that each new post here pops up on my facebook feed. i feel like i’ve made my already personal account almost excruciatingly personal. i’ve had a couple of responses to the tune of “this isn’t how i view you,” which is great, because who would want to be the physical and psychological embodiment of murphy’s law? who wants to be the perpetual debbie downer? my truth is: i don’t want anyone to see me like this and i go to great lengths to keep my untidy life under tight wraps. i’ve, in fact, created an environment in which i don’t have to divulge this information to anyone except for my parents, who help me immensely, and my partner, who loves me without reservation (oh, and also the government, but that’s another mess of a story).

as my illnesses have progressed and the symptoms have grown unpredictably predictable (i can almost always expect a physical shit show if i get even slightly stressed out), i’ve felt increasingly unable to explain my situation to people. sometimes i feel like an injured pack animal that goes to any length to not show weakness. ask me anything about my physical ailments and i won’t hesitate to answer honestly. there’s no show-and-tell ’round here. it’s tell-only. i think this has a lot to do with the fact that i have names of disease and “proof” of their existence. i’ve been frustrated by being sick but i’m not ashamed of it.

psychologically, there’s a totally different story here. it’s terrifying to witness your mind changing for the worse and to not know why it’s happening or what to do about it. while i’ve talked openly about my physical limitations, i’ve kept my mental ones a secret, a well-guarded, painful secret. truthfully, until really recently, i don’t think i even allowed myself to engage with thoughts of how different i have become. but just like how my vision went from 20/13 (far better than “perfect”) to 20/20 in just over a year, everything is constantly shifting to a worsened standard. my brain doesn’t work the way that it did, but the rest of the world can’t see it. from the outside, i seem okay. it wasn’t until i was able to tie the mental changes and modified moods to lyme disease, to give name to my disorganized mental state, that i have felt able to talk about it. having just been diagnosed, i’m in the thick of all of this. it feels dramatic. it is dramatic. without regard for my level of discomfort, i want other people to have access to my experience. i  also want to be able to face all of this without shame. this process of unveiling, both personally and publicly, scares the shit out of me. i’ve become adept at tucking this into the shadows and now i’m forcing it into the light. i have no intention of staying in this heavy, depressing confessional state forever, but for right now, this is where i am and i’m going to do my best to keep myself honest.

there’s almost always point where you realize that you’re on it- the path of the five stages of grief. right after you wander out of the denial phase thinking “(insert event here) __________  has actually happened,” you find yourself, jaw clenched, venomous tongue waiting to lash out and it dawns on you  that you’re furious. your solid state of “i’m fine, really. i can’t change the past,” is rapidly shifting into a molten liquid “fuck that.” eventually, the fury bubbles up releasing gases. you mutter softly while walking down crowded streets, asking that someone, anyone, can change that gas back to a solid state. somewhere along the line, pleading with universe melds into sadness, an often profound ache that makes even breathing seems like a heavy-handed task. but you keep on breathing and the sun and moon keep on rising. time, work, and love find you in a place where you think, “(insert event here)_________ happened.”

thanks for the model, elisabeth, but i’m just not there yet.

when i was four, my stubby-legged, aggressive, butter-hearted yellow lab got sick. at the time, there were no lasting impressions of what that sickness might mean. i was always sick and i would always get better. this 4-year-old logic also applied to my dog, brit. he was sick. he would get better. and then that winter, i saw the blood spattered brightly across the freshly fallen snow. “his kidneys don’t work,” my mother tried to explain to my brother and me. “we’re going to have to put him to sleep.” i remember the series of events as a movie, something that happened to a caricature of me that i was watching from afar. then one day in the spring while my mom was doing yoga and watching days of our lives, i snuck out the backdoor with the crusts from my sandwich. brit wasn’t there. he wasn’t coming back. i’d have to start eating the greasy, limp potatoes my mom pan friend for dinner. i’d have to sleep in my own bed instead of on the floor with the dog. crusts mashed into my little hands, i walked into my mom’s room and burst into tears. death sucked.

my dad, sociologist that he is, pulled out a text book and taught me elisabeth kubler-ross five stages of grieving. over time, i learned to recognize them as the process i had to go through each time someone i loved passed or i lost something i had really wanted. it wasn’t until four years after my mixed connective tissue disease diagnosis that i had an ah-ha! moment and saw myself deep in the throes of grief. i had no idea how to wade forward out of the denial and into the anger. because i couldn’t change it, it seemed like a foolish thing to be mad about. like it or not, it was happening, as it had been for unnumbered years. long story short, after the bargaining (trying to give one thing to save another) and after the depression that lasted years and led to the darkest days of my substance abuse, i did find a place of acceptance. the problem was, i kept getting new diseases and new symptoms. one week to the next, i’d have a different repertoire of  pain and problems. the picture changed so much and so rapidly that i couldn’t keep up with the grieving process. i was so overloaded that my circuitry short-wired and blew my board. i was angry, indignant, anxious, depressed, ignoring the medical changes, and resentful. if it was dark and ugly, bet that it was a piece of my stomping grounds.

in ways, grieving for a person you’ve lost is simple. grieving for yourself, actually being the person that you lost? that’s a lot more complicated.

for the past week i’ve been vacillating wildly between equal parts anger, sadness, and relief. as i read about lyme, hear people’s stories, i feel indescribably angry that i have spent more than twelve years and over $100,000, to be constantly and systematically discounted. i started thinking that this disease, that could’ve been treated when i was young, had robbed me of the lives i’d dreamed of. i can’t get over the idea that every single thing in my adult life has been dictated by my fail(ed) health. then i shift into this intense sadness for myself and my family. i have dragged every single person i love through my endless mud. it breaks my heart that my family, my friends, my lovers have had to endure the cast-off of my agony. i have been (and often am) completely crazy, apologizing for my irrationality and trying to ignore my self-loathing for feeling so mentally and physically out of control. in the pages of the book i’m reading, cure unknown, through the personal testimonies and chatroom boards, i’m starting to get a sense of camaraderie (i’m still just a voyeur though). oh sweet god, i am not crazy and i’m not alone. in this, i find relief. last night, for the first time since i began this horrible medical journey so many years ago, i allowed myself to wonder what a life without pain, with mental clarity, with the capacity to really live, would be like. to think there might be another side to all of this is a gift of the greatest caliber. what if i can hike again? what if i can read a book? have a baby? hold down a job? what if i can finally live one of the many lives i dreamed for myself? what if?

heads up: this is technically thick and substantially boring.

today i went back to the rheumatologist who ordered my western blot test for lyme a couple of weeks ago. last week i had his secretary fax over my blood work (if i wait for my doctors to hand me a copy, i might never see what’s happening in my own body.). when she sounded resistant, i told her that i needed it for another doctor’s appointment. this was only psychically true.

i got the labs, looked them up and down, and on the first five pages, everything looked pretty standard. low red blood cell counts, hemoglobinhemacritlymphocytes and monocytes. my C3 and C4  (complement levels) were low. my ANA (antinuclear antibodies) were positive. my DNA ABS, SM/RNP AB (smith antibodies), sjogren’s AB and anti-nuclear AB titer were high/positive. my urinalysis showed improvement in the liver arena (ALT and AST) but my creatinine and alkaline something-or-other were low. on all my results, many of the tests not marked positive, too high or too low, were sitting right on the edge of being marked abnormal. all the usual suspects were in the ranges i expected. a few things had improved, (nice, but i don’t put much stock in the small variations anymore.) but then i got to the 6th page of the report- the western blot tests. the tests measure the reaction or antibody response to the presence of  “specific infectious agents.” the 41 KD IGG band was marked positive. this particular marker picks up just the flagella (the tail) of a spirochete and isn’t specific to lyme. it can also indicate gingivitis or syphilis, neither of which i have. i have had false positive tests for syphilis in the past, much to my humiliation, but these were explained to me as something that’s common for people with lupus. fascinating.

there are a number of problems with using the western blot test to determine wether or not a patient is infected. the test only looks for Borrelia burgdorferi antibodies. there are a number of other bacterial spirochetes that cause lyme disease that are not screened for by this test. depending on what stage of the infection you’re at, you may or may not show antibodies for Bb. many patients with long-term lyme infection are seronegative (aka: a false negative). okay, i’m realizing that i’m spiraling into a babbling hole of information. i found this explanation of the western blot that will do a much better job of describing the test and subsequent problems than i ever could.

i immediately called the secretary back to schedule an appointment.

“but the doctor hasn’t even had a chance to review your labs,” she said, “and you need to have more than just one band to have a diagnosis of lyme.” i assured her that i was aware of the diagnostic standards for lyme disease and still wanted to see my doctor as soon as i could. completely annoyed with me, she put me in the schedule. “this isn’t an emergency, just so you know,” she told me.

“sure,” i said. “thanks for indulging me.”

after i hung up with her, i considered her reaction. it seemed to me that if she felt well enough informed, not as a medical practicioner, but as a secretary, to tell me that i didn’t have lyme disease, then i probably needed to find someone who wasn’t going to discount me so easily. after a bit of research, i came across ILADSthe international lyme and associated diseases society. i sent them an email stating that i was looking for a lyme literate doctor (LLMD) in my region of new york. i told them that i had medicare and given my limited income, really needed to see someone who accepted my insurance (the insurance bit can be tricky, if not impossible, to navigate when it comes to lyme doctors). within a half hour, ILADS sent me a response with the name and number of a doctor who had completed the ILADS training. i called her immediately and scheduled an appointment.

are you still with me here? i know this is dense and that wading through unfamiliar acronyms is quite possibly one of the most tedious and unpleasant reading tasks. it has taken me at least a decade to get a somewhat decent handle on what all of these things mean, and even after all the research i’ve done and questions i’ve asked, i forget everything. i have to hunt down all this info time and time again because i can’t keep coherent thoughts in my head. my guess is that if you’re reading this, it’s probably because you (or someone that you care about) has lyme, so you know what i’m talking about here. most days, to get from point a to point b takes a few too many trips back to point a.

i’ll write more about my appointment with the lyme disease specialist soon. she’s awesome, by the way, and after my meeting with her, i started to feel like maybe, just maybe there’s a light at the end of this tunnel.