lackluster.

March 30, 2012

i got out of bed today.

are you giving me the slow clap? well, speed that shit up. i feel like i deserve some real applause for dragging myself from my comfortable nest, making myself a cup of green tea (it helps detox, didn’t you know), shuffling into my office/infusion station and hooking myself up to an iv. this morning was the most difficult one so far. after i started my antibiotic drip, i gave up on being out of bed. i wheeled my friend (my grandma used to call her walker her friend, so i’m calling my iv pole my friend) back into the bedroom and hid under the covers. i set an alarm so that i wouldn’t oversleep the iv and end up with a tube full of blood. i writhed around for a while and woke up to a perfectly timed alarm. then, i writhed around some more.

it’s completely possible that my previous feelings of “this isn’t so bad” were because i was doing it wrong. in the last year, i’ve started to have some considerable problems with numbers. at first it was just switching them around a bit but the progression of my numbers issue was strange and significant. on many occasions now, i’ve read the clock wrong. this could seem like an understandable mistake if i were four-years-old and it was an analog clock. sadly, i misread digital clocks as well. i’m never an exact hour off the mark either. i’ve thought it was 7:12 when it was 8:40. i’ve set alarms for appointments and meetings that were after the actual meeting time. my number jumble is the only explanation i can come up with for how i ended up giving myself only one infusion of merepenem a day instead of two. though i looked at the written instructions at least 20 times, i saw the number two as one. now that i’ve stepped it up, i feel worse.

how to wash your long hair without getting your body wet. otherwise known as "the toad bath."

the lactated ringer’s, which are kind of like bags of saline with less sodium and added electrolytes, bring me a lot of relief. they help ease the migraines, rehydrate this body that can’t seem to retain any liquids and help my muscles to unwind a bit. there aren’t a whole lot of things that i have uncovered that actually make me feel better. i bought a heated foot bath with bubbles that are supposed to massage my feets (that was intentional). i haven’t taken it for a test drive yet, but i thought that it might help with relaxation and detoxification. i’m dry brushing my skin to help remove dead cells and toxins. because my central catheter insertion sites haven’t healed yet, i’m not able to do things that stretch my right shoulder, which puts a real damper on my ability to work out the knots in my muscles. i’m supporting my body the best that i can, but… this is painful and it’s just the beginning.

squirming around in bed, i was wishing for an acupuncturist/massage therapist who could come to my house every day, lay their healing hands on my aching body and feed me grapes. then the image of hedonismbot from futurama popped into my head. grapes aside, my desires aren’t hedonistic, but they’re also not realistic. i need to find some practical self-care that can make a dent in the pain i’m experiencing.

my fios is out for the second time in two days, which means that for the moment, i am without the internets. so in the meantime, i’m going to hand draw you a picture of myself bathing. don’t mind the stick figure obscenity.

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i ended yesterday’s post, mid-infusion, craving cookies and sitting on the couch. if i thought that giving myself the actual iv infusion was scary, what followed next was horrendous. i should tell you, i’m writing this from my inexperience, which made this whole event incredibly dramatic. i also feel like i need to document this because this is the kind of stuff i would like to have read. i want to know what someone else on a similar path has gone through, to give this all a shared human experience.

i spent the next 45 minutes staring up at the iv bag, waiting for it to finish. drawn into some hilarious back episodes of archer (okay, i’m starting to warm up to having cable, or at least to having on-demand and premium channels), i didn’t notice when the bag was finally empty. i stood on the couch and freed my line from my ukulele and headed to the bathroom. while in there, the doorbell rang. without an iv pole, i had to set the empty bag down to sign for some packages. i have become the reason that i use hand sanitizer after touching those door-to-door styluses. king ebi, my ten-year-old ragdoll cat, titled “king” for the week because he clearly believes he has vanquished the dogs and now owns the house, tried to make a pathetic run for the outdoors. his pale blue eyes don’t adjust well in bright light and he made it down two stairs before playing freeze tag and waiting for me to pick him up. by the time i got back in the house and remembered that i was on my way to my sterilized office to unhook my iv and flush the catheter jutting out of my left shoulder, the iv tubing had filled with about three feet of my blood. i forgot to close the valve on my powerline, allowing the flow of liquid to reverse because the iv bag had dropped to the ground, well below my heart (unless we’re speaking metaphorically, because in that case, i was tripping all over that panic-stricken, beating mess). of course, upon seeing that i had done something wrong, my lyme-addled brain completely forgot about the catheter valve.

okay. blood. i can handle that, right? i just needed to disconnect and flush the line. i washed my hands and ran into my makeshift procedural room, unwrapped a sodium chloride injection, unhooked the iv bag, wiped the caps with alcohol swabs and screwed the injection onto my line. when the sodium chloride injection started blossom with my bright red blood, i realized two things, i hadn’t closed my catheter AND i hadn’t cleared the air from the injection. i unscrewed the injection and tried again, but the plunger didn’t budge. i remembered the nurse who taught me how to use my powerline catheter saying, “don’t force it. call us,” so i called them. i got their voicemail. i left a message that said something like, “hi. i’m having a problem with my infusion and i really, really need someone to call me back as soon as possible, please.” this was said as if it was one gigantic, multisyllabic word. then i hung up and stared at the blood pushing through the purple polyurethane tube wondering what to do. what if the blood had coagulated in the line? i mean, there was a pain in my chest. i felt pretty sure that was from anxiety, but what if it wasn’t? what if i pushed it and sent a clot pulsing straight to my heart? what if i screwed up my line and had to have it replaced? should i just use the heparin injection (the anti-clotting agent)? i thought of my phone call options. not wanting to bother one of my best friends while she was at work, i called a family member and confessed that i had done something wrong and needed her help. she calmly asked me a few questions and talked me through what to do. i needed to sanitize the catheter again and screw on another injection of sodium chloride. i did that and forgot, again, to expel the air (there is a part of me that is completely ashamed that i forgot to tap out the air bubbles…). i started over and to my inexpressible relief, the liquid ran in, pushing back the blood in my line. i hooked up the heparin and injected that too. my brain had forgotten more than medical protocol. it had lost the ability to form complete thoughts, so in an exhausted, adrenalized cloud of gratitude, i thanked my nurse/angel and abruptly hung up. immediately after, dr. j’s staff called me back. “it’s okay,” i breathed heavily into the phone. “a friend who is a nurse talked me through it. thank you for calling me back though.” we awkwardly hung up.

diagram of a central venous catheter.

though the staff at my doctor’s office was incredibly thorough in their explanations and demonstration of how to give yourself an iv infusion at home, they only showed us how to do it once. burned out from travel, from surgery, from the fact that i soldiered on with only one functional arm to go buy shit instead of sleeping off the anesthesia, i wasn’t in the best position to comprehend the demonstration. my partner and i did take film and audio of the whole process, but i couldn’t sift through our hours of footage to find the troubleshooting section. much to my shock, i also couldn’t find any concise instructions online when i needed them. as i was frantically inputting various combinations into search engines, the gravity of this central line catheter dropped like a stone into my thoughts. i have a tube that gives something foreign, something external, a direct shot to my heart. there is room for mistakes, but how much room do i have? i need to get this right and i need to take the time to be sure that i’m fully prepared before i try to do anything new.

i spent the majority of the afternoon and evening nursing a migraine headache, trying to formulate a list of questions to ask the clinic infusion team. there are so many things i don’t know, and though i like to believe i have all-knowing superpowers, i don’t. i need help. i need answers and i need to get a grip before i do something really stupid.

subtitle: what to expect when you’re getting a powerline placed for lyme.

i don’t know why i associate georgetown, dc with will smith. apparently, enemy of the state had a bigger impact on me than i ever knew. i did enjoy that movie. huh. imdb gave it crappy stars.

ahem. on to some real talk.

i tried unsuccessfully to write this last night. i was like a puppy battling sleep, her head bowing, eyelids fluttering, chin dropping and then she remembers- she’s trying to stay awake. the night before my surgery, in a fervor of gluttony before the dreaded “can’t eat after twelve” warning, i came back to our hotel and found myself sleepless. i wasn’t worried. since we arrived in dc, i haven’t been scared. i just couldn’t sleep. in the morning, my boo and i dragged our sleepy butts out of the hotel and just down the block to george washington hospital, where i was going to have a powerline placed in just below my right clavicle. we followed instructions and went to registration. a very serious man asked me a few questions and gave me a pager not unlike the kind i get when i’m with my grandpa at the olive garden. i was to come back to finish my registration when the pager went off. The pager had not vibrated or blinked. suddenly, the small, serious man came racing around the pager whisper shouting “you did not answer your pager!” i imagined we were back in 1992 and he’d called me from a pay phone with a 911 page. i thought this was funny.

after registration, i was taken upstairs where i was prepped for surgery- not a big deal. they were highly organized. the staff was sweet and joked with me. i was a model patient, observant and mildly funny. i didn’t really have any real questions so i kept asking if we were going to drop my bags off with my partner. one of the nurses asked me what “my partner” looked like, or at least that’s what i thought she asked. i replied with, “hairy. he’s got a giant beard.” as she walked away i yelled out his name to her. she called back, “you never know. when someone says partner, it could be anyone.” moments later, in my observation room, they both appeared. she had gone to the waiting room calling out the name “harry.” my partner was one of two people waiting. they relayed the story when they came back to observation. i thought this was hilarious. i laughed the whole way to the surgical room.

on the operating table, there was pop music piped into the room. the first two songs i ignored and then came adele’s “someone like you,” and i started softly singing along. my anesthesiologist came into the room (not able to hear me singing) and said, “i love this song. i can’t believe i like pop music now, but i really love this song.” this was a good topic for us. the surgeon was jovial, explaining the procedure to me. the nurse was so sweetly complimentary. i drifted off into fentanyl & benzo sleepy land surrounded by my three new friends.

so the procedure goes something like this:

the patient (ie: me) is given twilight anesthesia and lidocaine is injected into the tissues surrounding the future sight of the powerline (this is a brand of picc lines that are placed in the chest. essentially, the powerline can handle greater pressure than an ordinary picc. i think that’s what i was told, anyway). interventional radiology uses an ultrasound to find the exact vein that the line will be placed in. two incisions are made. one is a little below the clavicle and this is where the line protrudes from the body. the other incision is to place the line. it’s just above the clavicle and is made in order to thread the line over the collar-bone, ending in the spot where this annoying purple tube juts out of the chest. the tip of line rests in the distal superior vena cava, which empties into the right atrium of the heart.

this information is how i’ve interpreted all that i’ve been told, but i might be wrong about a few things. should i make a disclaimer? i am not a medical professional, just a professional patient. bear in mind that i was given lovely and hefty drugs during this whole thing. then, in spite of the fact that i would have loved nothing more than to stay in my sleep-state, they injected something into my iv that reversed the anesthesia. i woke up, remembered to ask the surgeon for a report to give to my doctor (a report that i was unable to get due to hospital red tape). i recall being slightly worried that i had bad breath. this is the kind of person i am- two minutes out of surgery and fretting about dry mouth and halitosis. there are so many things wrong with me… then i was wheeled back to the observation room.

the nurses offered to bring my partner back. “if he’s sleeping, don’t wake him,” i said, at least twice. but then his beardy face appeared at the side of my gurney. “aren’t you tired?” i asked him. he sat in a chair. i really, really wanted to sleep, so i invited him to sleep in my hospital bed with me. i figured that if he slept too that i wouldn’t feel so bad about snoozing. no such luck.

the nurses brought me a water, which i tried to grab with my right hand. i knocked it over. “oh shit,” i said. “i dropped it.” they assured me that it was okay. i drank it with my left hand. another task arose and i tried to lift my right arm. i pulled it up, elbow to waist, and it dropped like a stone back to the bed. i touched it with my left arm. it was numb, like lidocaine numb. i called a nurse over to discuss my odd paralysis. they sent a doctor in to ask me to raise my arm. i could not. as hard as i tried, as much as i willed it (not unlike the years i spent as a school kid trying to harness the powers of telekinesis, which i did not have, trying to make a pencil slide across the desktop), it kept falling back to my side. “it may be that they nicked a nerve and it’s just irritated,” the new doctor told me. “it should go back to normal within the next 24 hours.” this explanation would have been completely acceptable had i not had a wisdom tooth pulled three years ago that caused permanent nerve damage to the front of my jaw. i still don’t have full feeling in a three-inch section of my face. but oh well, i had bigger things i wanted to do. i wanted to go buy some shit on m street in georgetown.

unable to lift my arm, woozy from drugs and in a fair amount of pain, i refused to get a cab and made my partner walk a little over a mile to the row of upscale shops down the street. i purchased a few vastly different and entirely adorable pieces of clothing, one of which was completely band of outsiders spring 2012 and cost $30. feeling triumphant and exhausted and pained, i consented to a cab ride home. cabbies love short fares, especially when they’re less than a mile with no turns but lots of traffic. so we tumbled out of the cab, stumbled up to our hotel room, and i fell asleep. when i woke up, i could move my arm again.

that, my friends, is the story of the powerline placement. sweet jesus, typing this was actually quite painful. i never thought i’d long for the coffee table that i have to hunch over to write (or stack my laptop on four yoga blocks, which is what happens more often than not).

yesterday, while sitting in the stark waiting room of yet another nuclear medicine department waiting to have a PET scan done, i picked back up pamela weintraub‘s book, cure unknown: inside the lyme epidemic. i had loaned it to my mother, found her bookmark wedged between pages just a few chapters into it and then hunted down my last dog-eared page. unable to find it, i scanned the book for the last underlined sections, places where i had scribbled in the margins. college taught me that it was okay to defile my pristine books with observations and questions. to tell you the truth, i was a little disappointed in myself for not being as far along in the book as i thought i should have been. of course, i got the book right when i was diagnosed with lyme and i still had the attention span of a gnat. i decided to be more forgiving with myself. i started reading where i thought i’d left off. what was the topic of the very section my notes hadn’t yet reached? the pioneering studies using brain SPECT scans and PET scans to attempt to understand what was happening in the brains of patients suffering from chronic lyme disease!

in cure unknown, weintraub writes about a psychiatrist and scientist, brian fallon, who is now the director of the lyme and tick-borne diseases research center at columbia university, as well as colombia’s director at the center for the study of neuroinflammatory disorders & biobehavioral medicine. fallon became interested in lyme’s effect on the brain after working with a relative who had chronic lyme. he discovered that brain SPECT scans (which is what i was supposed to have done, but couldn’t find any place within a reasonable driving distance that performed them) showed decreased blood flow in lyme patients, even when the patients’ MRIs were normal. in 2009, fallon began using PET scans to obtain more information, looking for proof of encephalopathy. in lyme patients, encephalopathy tends to manifest as subtle impairments in memory, concentration, learning, and conceptual abilities. through his brain imaging studies, fallon found that specific areas of lyme brains were remarkably affected by the disease. on my prescription, there were a number of codes/reasons for why i needed these scans performed, but the final explanation i got over the phone of why i needed this test was for what fallon had discovered. we are looking for evidence of areas in my brain where the blood flow is restricted by lyme infection. proof of this would help substantiate my need for iv antibiotics, one of the few treatments shown to actually reach the infection once it has passed the blood brain barrierhere’s a link to some of fallon’s studies, if you’re interested.

they called me from the waiting room and led me into a small injection lab where a nurse put in an iv. he inquired about my magenta, swollen fingers. i said it was from raynaud’s. this wasn’t enough of an explanation for him, and after a few more questions i told him that i had a number of autoimmune diseases. i started to list them. he laughed, gently touched my hand and said “okay, that explains these.” then he did the best job putting in that iv. today there is hardly a mark and not a bruise in sight. he also measured my blood sugar. the PET scan works by injecting glucose molecules that are tagged with a radioactive tracer, which can be seen as it travels through your brain. if your blood sugar is too high, the results will not be accurate. my blood sugar was at 100, which the nurse said was good, considering that i had taken my corticosteroids that morning. unaware that steroids raised blood sugar, i had my cortisol levels checked on my way out-of-town (another blood draw at the lab by my house) and had to take the steroids in order to have that test done. i had to fast for both the blood draw and the PET scan, which were requisitioned for the same day, so i thought i’d kill two birds with one stone. i guess i was lucky that one of those stones didn’t tumble down and hit me on the head.

the nurse pulled a syringe encased in a metal box (presumably to entomb the radiation) and pumped the contents into my iv, then flushed it with a few syringes of saline. he led me to a room with a reclining chair, gave me a pillow and a hot blanket and told me to sleep if i could because my brain needed to be as inactive and under-stimulated as possible to get the best results with my scan. we chatted for a few moments, during which he asked me if i snored. “not to my knowledge, but then, i guess i wouldn’t be the best person to ask. let me know if my potential snoring bothers anyone,” i said playfully. he told me that when people snored, it activated their voice box, which could derail the calming of the brain. fascinating. he hit the lights, closed the door and left me to nap. it’s funny, for someone who has so much trouble sleeping when i’m supposed to, if you drop me into a hospital for tests, i can hardly stay awake.

perpetual visitor.

i slept for an hour. a technician knocked softly and told me we were ready to do the PET scan. he led me down the hall to the imaging room and instructed me to lie down with my head stuffed into an open-faced helmet attached to the table. the test would take only about 15 minutes but i knew i wasn’t going to stay awake for it. there is something hypnotizing about the sounds those machines make. they always put me right out. at one point, half-asleep, half-awake, i thought i heard him tell me to turn my head to the left. i started to move my head when i realized i had dreamed that. i snapped my head back to center, chastised myself for moving, and hoped i didn’t screw up the test. apparently, i didn’t.

the whole process took about 3 hours, not including the hour + drive, so my partner and i headed off in search of food. at lunch, i questioned how my college roommate from scarsdale turned out so awesome. we decided that we never wanted to live there (no offense if you love scarsdale. it’s just not for us). i checked my emails. there was one from my lyme physician assistant letting me know that the results of my HIDA scan were acceptable. though we will continue to monitor my gallbladder and bile production, i get to keep my gallbladder! this is great news, particularly because i had drawn my first line in the sand regarding my willingness to follow all of dr. j’s instructions. though allopathic medicine seems to believe you don’t need your gallbladder, everyone else disagrees. that shit is important. unless they’re cancerous or necrotic, i intend to hold onto my organs as long as i can.

i feel like i’ve been in a painful holding pattern. i’ve been waiting on tests, test results, my hormonal levels and adrenal function to improve, my sleep patterns to balance out, and for my brain and pain to smooth out enough kinks to be ready for the iv antibiotics. i keep telling myself that this is all part of a process, but some days, the waiting is too dense and depressing and i feel like i’m not going to make it to the starting line.

every summer, from grades three through six, i pretended to be lutheran so that i could go with my best friend to her church camp. i didn’t know the words to any of the prayers, which became less embarrassing as time went on, but i loved the campfire sing-a-longs and pined after counselors who were more than twice my age. i hid contraband/candy in boxes of tampons i didn’t yet need. i listened to ghost stories and plotted how to prank other campers. i remember so much about what i did at camp, but i don’t remember a single person, save a counselor named matt. today i was reminded of part of my lutheran-impostor camp experience. our arms full of sleeping bags, caboodle cases and things to tie-dye, we would shrug off our parents hugs and board an old school bus that belonged to the camp. we’d wave goodbye as the bus pulled away. just before we’d hit the turn-off to the camp entrance, there was a long, steep hill and it was tradition to chant “i think we can. i think we can.” mid-hill this would turn into “i know we can. i know we can.” when we chugged up over the top of the hill, the bus erupted with cheers and claps. “i thought we could! i thought we could!” it’s possible that the driver doubted the bus would make it, stuffed to the gills with children and loads of sleep-away necessities, but that thought never occurred to us. we chanted because that’s what we were supposed to do. we did it because everyone else was doing it.

some days, i feel like the little switch engine that could, going about life, unable to travel long distances, and instead doing heavy lifting in short, concentrated bursts. i feel like the engine that’s running out of steam but still believes she’s going to make it. this is sort of the opposite of how my partner sees me. he tells me that i’m like a ferrari; it looks gorgeous, drives smooth and fast, and requires constant and expensive maintenance. sweet talk for a difficult situation. he had no idea what he was getting into four-and-a-half years ago.

now all of the first-visit tests have been conducted. the results will be back soon and, fingers crossed, i’ll finally be able to move onto the next phase of my treatment.

i know i can.

i’m writing through tears. i’m writing with bandaids on four of my fingertips, with swollen fingers that have what appear to be puncture wounds in them. i’m writing with a migraine headache and too little sleep. i’m writing. is that what counts?

in so many ways, i wanted this to be a resource for other people, to have useful information that would help lyme sufferers to be able to click a link, read about a different treatment, get connected with something that or someone who might give a new direction to their quest for wellness. maybe this is still that, but i keep finding myself so overwhelmed with the tedious details of my own treatment that it’s hard to take the time to research and write entries that are resources beyond my virtual treatment diary.

the HIDA scan machine and the overly tired girl.

today i had my HIDA scan, which took about five weeks to have approved and scheduled. i was out of bed at 6:45 am, not an easy time for an insomniac to wake. i got on the road, and a few turns later, i braved the taconic parkway (why is that road so dangerous? seriously. i don’t understand why they haven’t put in stop lights or something that would slow drivers down. i’ve never been on it without seeing an accident. today it was a 3 subaru pile-up). using the address the hospital had given me, i ended up in a college parking lot. unless i was going to have undergraduate experiments performed on me, i was in the wrong place. i called nuclear medicine and was told “oh, that was our old address,” and given the right one. i raced to the hospital, rushed through admissions, and then bolted to nuclear medicine. they couldn’t have been nicer, but they told me that it was going to be a long wait. armed with my dude’s ipad and some crappy tv shows he had downloaded, i stuffed my legs up into a chair and started watching tv. i hadn’t eaten, drank or taken any meds since 11pm the night before. it was 11 am.

my turn in the HIDA scan came and a team of nurses and doctors stood around as my radioactive iv dripped. the iv nurse asked why i was having the test. when i told her, she said that she had lyme disease too. i asked if she was treating it. she said she’d been using alternative and homeopathic therapies for about four years. “are you better?” i asked. “has it gone away?” she told me that she could always tell when it was returning. she said she felt it start in her back. somehow we got on the topic of how our dogs had had lyme too. both of our dogs were now lyme-free and vaccinated to prevent future infection. i told her that yesterday i had asked my veterinarian to someday sit down with me and talk about the incidence of owners and their pets both being infected, as well as alternative and holistic therapies for both animals and people. “it’s funny that we can cure our animals, but we can’t seem to help ourselves,” i said and the iv nurse agreed.

“it’s just like having a cheeseburger and some fries in here,” another nurse said, tapping the iv bag.

“i don’t eat any of that,” i told her, laughing a little. then she said it was like having fried food. i didn’t bother to say i don’t eat that either. i knew what she was getting at.

then i spoke with the man i’d been in contact with at the hospital. he was every bit as kind in person as he’d been on the phone. we went over what the HIDA scan was for. i interrupted and finished sentences, not to prove that i knew what we were talking about, but to get the show on the road. the HIDA scan looks at bile production and how it moves through your liver, bile ducts, gallbladder and small intestine. dr. j had mentioned that i might need to have my gallbladder removed before i could start the iv treatments, but i hadn’t asked for any clarification. i thought he was just basing that possibility on the fact that i had pain in my abdomen when he pushed on certain parts. as it turns out, dr. j has found a lyme connection between the gallbladder and the sphincter of oddi, a round muscle that allows bile and pancreatic juices to flow through it. there may be an association between sphincter of oddi dysfunction and lyme disease, and this is one of the things that we were looking for today.

after talking to the staff, i fell asleep on the machine. i woke to hear hushed voices. “did you have a nice nap?” someone asked. my mouth felt dry and my head hurt. “we’re going to get started,” she said, and i nodded back off. at some point during the test, i felt like the machine was vibrating and that all the metal on my body (i was still in my street clothes) was getting pulled in different directions. i even felt like the one metal dental filling i had was being sucked toward a magnet. i asked the technician if that was normal. she said some people felt a small vibration. i’m not sure, maybe i was sleeping and it was a dream, but i felt it again and it was stronger. i felt like the enormous camera was getting closer to my body. i tried to call out to the tech, but i couldn’t open my mouth. i decided to go back to sleep.

on the dangerous drive up the taconic, back toward my home, white plains hospital called me. they said they had to cancel the brain spect scan that was scheduled for tomorrow. the materials they needed to conduct the test had been discontinued and that it didn’t look like an acceptable alternative would be available any time soon. did i want to schedule a pet scan instead? i wasn’t sure if that would be a suitable substitution, so i asked if i could call back after i got off the road and spoke to my doctor. when i talked to the head of triage at dr. j’s clinic, i was told that we needed the spect scan to determine whether or not i could get the iv treatments. “we need the scan because we have to make sure that some things are present, for legal reasons, really.” i made some more phone calls. i sent out some emails. i started to feel resentful that after all this time and all the work i’ve put into having the test done, it’s not even on my dockett anymore. and then it hit me. what if they don’t see whatever it is they need to see? what if there’s no visible ischemia or affected areas of my brain? what if they don’t believe me and they think i’m just nuts, not lyme-nuts, but just nuts? what if i don’t get to have the iv treatments? what if i just have to keep taking oral antibiotics? the what-ifs kept growing and suddenly i was an overly tired, weepy, angry mess.

here’s the thing: i’m not the same person that i was before. i’m still smart, sure, but my mind doesn’t make the connections that it once did. i have the inkling of some brilliant thought, but can’t actually complete the sequence to bring that thought to fruition. my vision is 20/20, but two years ago, it was 20/13. everything is worse and maybe my worse on some scale is still pretty good, but i’m absolutely, completely tired of not being able to be me. i keep perfectly organized binders and extensive notes on all conversations so that i can recall any information. if i didn’t, i wouldn’t know shit about shit. i have learned to adapt, but adaptation is not the same.

about ten years ago when my anxiety started, i remember telling my then-partner that i had never had this happen before. when the panic attacks began without any explanation or cause, i kept saying “i don’t understand what’s happening to me. i don’t know why this is happening.” before the onset of those symptoms, i was gregarious. i was social. i was fearless. if i was nervous before doing something, like playing a piano recital, acting in a play or climbing a mountain (literally), it always meant that i was going to excel. i threw myself into each and everything i did. i did that because that’s how i liked life- with challenges and trials that i could conquer, with times i could aim to beat and failures that meant i could give it another go and succeed the next time. i did best under pressure.  slowly, bit by bit, that all changed. and now, my life looks so different than it once did. that life, the one where i believed in me, where i trusted that i could catch myself when i was falling, that feels like a fantasy, a dream i once had.

i’m not asking for the life i dreamed up. i’m just asking for a life. i don’t expect to have one that’s free from physical pain or regular doctor’s appointments. i’ve given up on the chance that maybe my autoimmune diseases were caused by lyme and will be cured when my lyme is cured (though i have come to really believe that lyme may stir up underlying diseases that may have otherwise never surfaced). i don’t think i’m going to be cured of everything, but honestly, i want to at least try to get better. the last time i was brave enough to stare down one of my incurable diseases, i was asked if i was willing to go to any lengths to get better. i was. i did. i have. i do. fighting my lyme disease (and co-infections) is no different. i am willing to go to any lengths. i am willing to follow suggestions, to defer to someone else’s better judgement, to endure suffering with the hopes that this is the means to a better future. i want these iv treatments because i don’t want to waste more time, scraping at the surface of my lyme (and because my personal research shows that in my case, this is the best option). if those what-ifs are right and dr. j. decides that i shouldn’t have the iv treatments, i’ll have two options: to follow whatever plan he believes is best or to find someone who will give me the treatments i believe are best. i’ve always wanted to fall the fastest way, hit hardest, to get it over with so i can pick myself back up as quick as is possible… but maybe that’s not the way to go.

my writing life.

February 21, 2012

there’s a header that says “why am i writing this?” and if you click it, it gives some information about, well, why i’m writing this blog. as time goes on, and as i go deeper down the lyme disease rabbit hole, i have new reasons for writing and i’ve realized different purposes that this blog serves. some of that service is for me, some for friends, and some for people i’ve never met. i want to tell you how i came to want to share this information with anyone who wants to read it.

when i was a kid, i wrote constantly. i had sanrio diaries with locks. i had special pencils whose only purpose was to put words down on the pages of a book i hid in the top drawer of my dresser (yes, not a clever hiding place). in the fourth grade, i filled a spiral notebook with poems and gave it to mr. h, my favorite teacher. in the margins, he drew wonderful illustrations and when he tried to give it back to me, i told him it was a gift. i wanted him to keep it. fast forward 20 years; my mom runs into mr. h in a grocery store and he tells her that he still has it and that it was one of the most special things he ever received.

as a teenager, my journals and i were inseparable. also, there was always a minolta srt202 in tow. i grew to have a favorite type of blank book (which i bought and probably sometimes stole from barnes and noble) and a favorite pen. this pen, i would later figure out, was neither waterproof or archival, a sad discovery. my friends and family expected me, at any given moment, to disappear to scribble something down. i photographed my teenage delinquencies and wrote about the heartbreak of unrequited love at 14. it was in high school that i started to wax poetic (no, really. all my prose was like dense poetry) about how my experiences were not unique and if i was feeling it, someone else, somewhere else had too. this philosophy developed into what i felt was a call of duty- to expose my innermost self in a written and public arena. i had a column in the high school paper and i loved to be at the center of moral controversy. my column provoked two kinds of mail- threatening letters and the oh-my-god-i-am-not-the-only-one mail. both stoked my fires. i kept writing. i kept revealing. but then i graduated high school and found myself sick and floundering in an expensive private college. barely able to keep my head above water, i stopped trying to stir every pot i saw.

in my early 20’s, i got into a very specific niche of performance poetry. i created a chapbook called “for love” (and i think i used it for one of my senior theses. oh yeah, i later reenrolled in a university). my photographs and art work were inexpertly cut and pasted between poems about the internment of japanese americans and meticulously crafted pieces expressing my anger over things like misappropriation and institutionalized racism and sexism. on the back cover, under a black and white self-portrait, it read:

i write about my experiences… these stories are never easy to tell… the complexity and depth of the silence surrounding us all are immense, and at times feel impenetrable. it is through honest contemplation of my life, that i have come to realize how difficult it is to talk about the hardship, sorrows and trials we have undergone… i write for unnumbered reasons, in part to bridge a void i once felt- to speak from a place that isn’t about shame or regret, but instead is from, and about, living and love.

once again, i thought i was pushing the envelope. i felt i was creating a narrative of my experience that needed to be heard. i was asked to be the third member of an already successful spoken word group. for the first time, i got paid to write and perform. i loved it. since then, my incredibly talented compadres have published books, collections of their poetry, and continued to move forward, sharing their words with the world. their success brings me joy. we’re not close; we hardly talk, but i’m still proud to have been on stage with them.

my writing went underground as my diseases progressed. i wrote about dis/ease and my decaying body. i detailed my depression and mounting insanity. i shared this writing with lovers, but no one else. during my darkest years, i shared it with no one, feeling so isolated that i believed no one in the world could understand what i was going through.

when i came out on the other side of that, i couldn’t write. words had left me. i was stuck writing the banal stories of what had happened in my boring day. i felt like all i could do was journal, and that both saddened and embarrassed me. a few years ago, i started a blog, just verbose entries about things i bought, stuff i did in brooklyn, and things i sewed, made and altered. it wasn’t terrible, but it didn’t have much purpose, save the fact that it got me writing again. i started writing a memoir about my japanese american grandfather. it wasn’t perfectly constructed but it was something. and then, in one of three set experiences i think you have to have to become a real “new yorker,” my apartment was robbed, my g5 computer was stolen, and with it went the memoir. my writing screeched to a halt.

my partner and i left brooklyn for a house in the suburban woods of the hudson valley. now, without three flights of stairs inhibiting my ability to leave my living quarters, my life became an involuntary, inescapable series of doctor’s appointments, physical therapy, talk therapy and complete misery. it was all i could do; i was sick and stuck managing it fulltime. i was in agony, physically, mentally and spiritually. i was fighting to keep my health insurance and most days i could hardly get out of bed, but i did it so that i could make my doctor’s appointments and hopefully keep my insurance. if i had to leave the house for any reason, like to go to the grocery store, i considered that my day. i could not do more than one thing each day, if even that. we got a new couch at christmas and by the end of winter, i had made a permanent dent in my shape.

sometime in the late spring or early summer,  my rheumatologist dismissed the typed list of symptoms i was having as something i should “talk to a psychiatrist about.” i saw a new rheumatologist who had asked me if i had been tested for lyme disease. “yeah, i don’t have lyme,” i said. he asked me if i was sure i had been tested. i thought i had. i disregarded the question. the new rheumatologist pushed on a series of painful spots on my body and diagnosed me with fibromyalgia, an incurable disease that disproportionately affects more women than men. i was so grateful that he had listened to me and looked for an answer that i wrote him a thank-you card. it’s still pinned in my file. that question of lyme disease stuck in my mind. lying in my couch dent one evening, i watched under our skin, the documentary about lyme, and the question came flying back. had i really had a test for lyme? if i had, it was in 1999. i’d had tick bites since then. i could have been infected after being tested. i remembered my doctors at the mayo clinic saying “this is not lyme,” and i believed them. i poured over my records to see if i could find a test for lyme. i couldn’t find one. i called my rheumatologist and scheduled an appointment.

“i went through my records and i couldn’t find a test for lyme disease. can you give me a requisition for a western blot test?” i know, this isn’t the first time i’ve written about this in this blog. i apologize for the repetition, on the off chance that you’ve read this before. the test came back with one band marked reactive, 41 kd igg. this marker indicates the presence of spirochetes and is the most common reactive band for lyme disease, but can also indicate syphilis or periodontal disease. i called my doctor’s office back to schedule a visit to talk about my lyme disease, which i was certain i had. the secretary thought i was crazy for interpreting my own lab results and determining this single reactive marker meant i had lyme. in spite of her protests, i scheduled an appointment. then i started this blog.

i write here because i have to.

i spent half of my life undiagnosed, sick and miserable. over the years and years of being sick, i blamed myself for so much of what was wrong. the medications prescribed to treat my autoimmune diseases never really worked and so i was constantly switching meds. when the doctors told me that my labs looked better but i still felt awful, i looked to my life for what the problem was. i changed my relationships. i ended my chemical intake. i modified my diet. i moved out of the toxic big city. i switched all my bath and body stuff to expensive natural, chem-free products. i bought ceramic knives. i only ate organic food. i started juicing. i meditated. i practiced yoga when my body allowed it. i gave up gluten, dairy, citrus, soy, nightshades, coffee, and an assortment of other foods i was told might help my health improve. i did everything within my power to get well and it didn’t work. only after i had exhausted all the possibilities that were within my power, did i stop blaming myself. i was doing everything right, so why in the hell was i still sick?

the things i write about are often highly personal. sometimes, when i’m talking to a close friend about what i’m going through, i think, “i can’t share that on my blog.” then i remember my philosophy growing up. i know that if i’m going through this, so is someone else, and maybe they need to know that they are not the only one. i have fears about disclosing the ways lyme disease has affected my mind, created periods of severe (and sometimes mild) mental illness, and caused emotional instability. it’s really hard for me to write publicly about my past substance abuse. and by really hard, i mean, i erased that line three times before deciding i needed to leave it. but i am not ashamed of who i am. i am not ashamed of how i came to be the person i am today. i often find myself telling my friends that we are all products of our own experience and we are all surviving the only way we know how.

i write the stories of my survival.

there is a part of me that is terrified by the idea that you might judge me for this, for any of this. i’m afraid that my partner’s family might read my blog and think i’m a terrible mate for their son. i worry that the information i write about my treatments could someday be used in a case against my doctor. sometimes i am filled with fear… and when i am, eventually, i remember that the only way i can stare down fear and win, is to write it down, tell on it to someone else, take away its power and name it for what it is: fear. without me, fear is absolutely nothing. i’m its fuel and i don’t want to feed it anymore.

i am doing what i have always done. i write. i tell my truths. i divulge private details that cause me some discomfort. embarrassed by my despicable grammar, i keep writing. i survive being embarrassed. i survive my fears. but i will not survive if i am silent… and so i write.

this trophy ain’t plastic.

February 10, 2012

i promised myself that my next post was going to be about something other than my own treatment, like cistus tea or alternative (read: non-western) treatments for tick-borne diseases. i’m no stranger to false promises, but even when they’re mine, made to me, i’m not a fan. i feel i can make an exception in this case. that, and if i weren’t writing about this, i probably wouldn’t be writing today. today feels less like a writing day and more like a “peruse through the music collection to conjure up old memories” day. singing along to songs you forgot, the ones you used to memorize how long it took to rewind the cassette back to the beginning so that you could listen to it on repeat, brings a kind of joy and nostalgia that isn’t meant for every day. i revel in it when i can. my basking can resume right after i share my good news.

i’m just finishing the fourth week of my dosing schedule for the new medications that dr. j has prescribed for me. some of the dosages have stayed the same over the course of the past month and others have quadrupled. i’ve been skittering and uncomfortable since i went to d.c. last month. the medication changes have wreaked havoc on my delicate mind. amid the mess of anxieties and racing thoughts, i failed to notice the changes in my body. last night after i got in bed, feeling only somewhat haunted by my looming insomnia, i realized that my pain is so much less severe. it actually feels kinda miraculous. i still have arthritis; my joints still creak and crack. i still have all sorts of weird medical issues and aches and hurts, but the excruciating, constant feeling of my muscles splitting apart or the suspicion that my spine is trying to rip itself free from my back, those are gone. they’re gone!! i knew that we were trying to treat my neuropathic pain but i didn’t really know which pains were nueropathy. i had no clue that this part of my suffering could be relieved.

until last night, i think i was waiting for the bottom to fall out on this reprieve from my shooting, stabbing pain, from my numb limbs and electrically charged fingertips. upon further reflection, i realized that if the treatment is working that means that i do have a raging infection in my brain, fraying my nerves and damaging my nervous system. you’d think i wouldn’t need further proof of this, but when doctors have been telling you for years that your pain is somatic, that your sudden onset of psychological problems (that disappear after a few months without medical treatment) are just manifesting because you are a woman/girl at the age of  _________(insert number here), that there is no medical evidence that any symptoms you are reporting fit your existing diagnosis and thus, must not be real, it’s not easy to let go of that pathologization. i would tell my doctors they were wrong only to return home, stare my reflection down in a mirror and ask myself “are you making this all up?” in my gut i knew there was something no one was seeing, something my teams of doctors were missing. our medical system very gradually re-sculpted me. it planted so many seeds of doubt; i was wrong and it was all in my head. the week before i was diagnosed with lupus and a mixed connective tissue disease, i overheard my doctor tell a nurse that i was a hypochondriac. another doctor referenced “hysteria” as a diagnosis once used to name my condition. yeah. seriously. that fucking happened. and i have a bachelor’s degree in women and gender studies. i saw red, charged full force at the doctor, then came home, collapsed into a ball and cried my eyes out (i could cry back then). after more than a decade, it’s hard to maintain, even to yourself, that you have a disease, that you’re not hysterical or crazy, but that you are sick. i have been conditioned to doubt myself.

thank you, dr. j. you are a freaking genius. after all your work with aids patients, it makes complete sense that you would understand how to recognize and treat neuropathic pain. but my brain has trouble making sense of things. the fact that your treatment plan, at least for this piece of the puzzle, is working is beyond remarkable.

here i am, awash in a sea of run-on sentences, holding up the trophy of my first treatment victory. god, i hope i don’t drop it.

Blessing and Healing Chant

Just as the soft rains fill the streams, pour into the rivers and join together in the oceans, so may the power of every moment of your goodness flow forth to awaken and heal all beings, Those here now, those gone before, those yet to come.
By the power of every moment of your goodness…
May your heart’s wishes be soon fulfilled, as completely shining as the bright full moon, as magically as by a wish-fulfilling gem.
May all dangers be averted and all disease be gone.
May no obstacle come across your way.
May you enjoy fulfillment and long life.
For all in whose heart dwells respect, who follow the wisdom and compassion of the Way, May your life prosper in the four blessings, of old age, beauty, happiness and strength.

*****************************************************************************************************

last night, i was talking to one of my best friends about where i’m at right now. i am taking six new medications. while most of me feels fine, there’s this piece of me that feels like i’m about to crawl out of my skin. i can keep it in check in front of others. i can act normal. i can play nicely. i can… but i’m very silently freaking out. in ways, i am so rational about my approach to treatment. actually, maybe i’m just good at rationalizing, but i digress. logically i know that taking a fistful of pills intended to target my brain and adrenal gland is going to have side-effects and cause some uncomfortability. i can’t stop moving, multi-tasking, worrying about things i can’t control, and indulging my obsessive, list-making self. i can say that i’m scared. i can make my mouth form words that describe how i think i feel, but i don’t know how to just sit with my feelings.

in a meeting last week, i was listening to someone talk about how their teenage niece has leukemia and how she’s so positive about it. “she can’t play soccer or do any of the things she used to do. she can’t attend school. she can’t do this or that or be a teenager, but she’s always smiling. she got a death sentence but she’s still happy as can be. we’re all sick over it and she has to make us feel better.” you get the picture, right? i don’t begrudge this young girl her happiness, but i realized that i was starting to resent the person who was talking about her. i couldn’t stop thinking about how positive i was in my late teens, after all my autoimmune diagnoses. i didn’t understand why it made my parents sad. i couldn’t really process the reactions of the people around me. i was going to get better. i was going to do what the doctors told me to do and this was going to heal me. that’s how i thought medicine worked. they know what this is and now they know what to do. 

okay, i feel like i need to stop here to tell you that in no way do i think that my diagnoses were anything like being diagnosed with leukemia. it is not/was not the same. i’m writing here about a train of thought triggered by listening to this person’s story. now, back to my regularly scheduled programming.

for a few years, in spite of slowly giving up most of the things that brought me joy, after relinquishing the life i had dreamed up as a child, i stayed positive. and then, after years of keeping my faith, it was gone. my light went out. my mental processes had turned faulty and unreliable. i couldn’t keep food down. i couldn’t go out with my friends. i went to a bar on my 21st birthday, had two sips of a beer and asked my girlfriend to take me home. i watched hundreds of movies, listened to the same cds over and over, and i wrote. my writing became dark and twisted, thick prose that detailed the demise of my hope. i scribbled depressing poetry, fortified by a hardback copy of gray’s anatomy i’d had since the fourth grade. in my mid-twenties, after i lost hope, my life rapidly spiraled downward. unbeknownst to me, a decade of constant immunosuppressants had allowed my lyme disease to infect every part of me. i was depressed. i was anxious. i was turning into someone else and i couldn’t stop it from happening. this led to my dark night of the soul, three years of such profound misery that i honestly thought i wouldn’t survive. at some point, i was sure i was going to die- a combination of my medical neglect, substance abuse and mental illness. i was spiritually bankrupt. i couldn’t remember who it was i used to be. i had given up on myself. i felt utterly worthless, a liability to anyone who crept into my sick life.

for those of you who have chronic lyme (or co-infections, or a debilitating chronic illness, or all of those things), i imagine you might be able to relate to this. my doctors weren’t helping me. i had the red stamp of insanity on all my medical files. having been relegated to the realm of crazy people, i stopped trying to get help.

then, amid the darkness, there was a major event in my life, which is not necessarily too personal to get into, but would just make this post even longer than it already is, so i’ll skip over it. this event reminded me that somewhere in all of this suffering, there was still goodness left in me. there was that buddha seed, the potential to be someone better than the person i had become. i nurtured that seed. i climbed out of my mental and spiritual pain. i cultivated my light. i changed everything about the way i was living/dying. i found hope again. it has been almost five years since i made the decision to live in this world, to participate fully in my life, to be of service, and to accept life as it comes.

so last night, i told my friend that i am scared. edging toward the precipice of my lyme treatments, i am hopeful again. having hope that i will find wellness, be healthy, be able to manage my diseases feels familiar. i did that once before. my wise friend called this fear my muscle memory, my body remembering and my mind recreating the past, but today, i’m a different person than i was back then. for one thing, i’m a grown ass woman, not a teenager. i’ve done so much work, so much soul searching since then. i have continued to nurture that buddha seed. this path i’m on is not the same one i walked before. it’s natural that i have fears that these treatments will not work and it’s my responsibility to face those fears. i remind myself that if i feel uncomfortable, that means i’m growing.

my friend suggested we text each other a prayer each morning upon waking. “but when i get up, it’s 5:30 your time,” i said. this morning, at 8 am, i sent her the first part of the blessing and healing chant i opened this blog post with. today i choose to embrace both my hope and my fear. they are twin aspects of a single reality, two sides of one coin, and for today, i’m going to honor them both.

my kidney function looks great, the director of the specialty clinic says on the phone. i know the numbers. i know what creatinine measures. i know this already- that my kidneys are working right now. he says it like it’s a victory, like the rest of my body isn’t busy being colonized by alien invaders, while the rest of my physical decimation is being carried out by my army of overactive immune system soldiers.

i’m staring down the barrel of a battery of tests that feel familiar, too vaguely reminiscent of a place i stood ten years ago, and that scares me.

i’m dressed in a khaki colored gown and a pair panties. i’m curled up in an uncomfortable chair in the second waiting area of radiology imaging; i’m staring at the pair of green wool socks i put on at 6 am. i chose them knowing my pale legs would be sticking out of a gown and that i’d be padding down hospital corridors looking just like this.  i’ve already had my abdominal ultrasound. i’m just waiting for my mri, with and without contrast.

i asked my sonogram tech, i think her name was terri, if she could explain what we were seeing as we went along. she told me she really couldn’t, that her work required all of her and that just telling me what organs we were looking at would be too distracting. “oh, that’s okay,” i said. “i understand. i just think this is all kind of fascinating.” that piqued her interest. terri wanted to know if i had a medical background. “no, i’ve just been sick for 13 years.” she asked if i had taken classes, like anatomy. i said that i had and that i’d also taken physiology, and that was apparently all she needed to know. she was talking to a layman, but one who at least had a generalized understanding of the interior of a human body.

she couldn’t stop gushing over the images popping up on the screen. “this is beautiful,” terri cooed, maybe to me, probably just to herself.  she’d move the wand to another gelled-up part of my body. “oh! this is just perfect! i never get to see ____(insert organ here)____ so clearly.” i made the assumption that it was because i’m so skinny. “actually,” she said, ogling my grainy, black-and-white spleen, “size does have something to do with it, but most people have so much air and gas and that’s what really gets in the way. you don’t have any!” who knew that my food combining would pay off in an sonogram? terri told me about how much she loved this part of her job- the actual finding, viewing and measuring of organs. she said she hated the other stuff. just then, another technician burst into the room, saw me, and gruffly apologized for barging in. “i need this room,” she barked. “you almost done?”

when it was just terri and me again, she turned and said, “see? that’s the part i could do without.”

maggie, the other tech, returned to the room to strip the bed and prep it for the next patient. without turning away from the screen, which had about 6 different images of my abdominal organs on it,  terri waved a hand in front of the pictures and said to maggie, “look at this. have you ever seen ones so beautiful?” maggie said nothing.

a couple hours later, i was in the mri waiting room, in that khaki gown, trying to ignore the grating voices of those horrible morning talk show ladies on the tv. they were drinking prosecco, making awful jokes and squawking about valentine’s day. i started thinking about terri, completely mesmerized as she peered into the inside of my body. it made me wish that i had something like that, work that i could lose myself in, do for twenty years and never tire of. it made me think that i just haven’t had that chance yet, that my passions, however intense, always get put on the back burner, my diseases put on the front. and as i started to feel wistful about how i inherited my father’s proclamation of being “a jack of all trades, an ace of none,” it occurred to me that maybe i’ll just be a late bloomer. when i get well, and i’m going to get well, i’ll discover that one of my countless hobbies glistens just a little more than the others. grey haired and doddery, i’ll tell interested onlookers that i can’t really explain what i’m doing because it takes all of me to do my work.

according to the infectious disease society of america (IDSA) lyme disease practice guidelines for professionals, as taken directly from their website:

  • There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (⩾6 months) subjective symptoms after recommended treatment regimens for Lyme disease.
  • The objectives of these practice guidelines are to provide clinicians and other health care practitioners with recommendations for treatment of patients in the United States with suspected or established Lyme disease, HGA (formerly known as human granulocytic ehrlichiosis), or babesiosis.

THE PETITION TO CHANGE THE IDSA GUIDELINES FOR LYME DISEASE:

since i signed it this afternoon, about 1300 more people have signed on. i can’t stress how important it is that we participate in this action to create change. these guidelines are what prevent those afflicted with lyme (and co-infections) from getting the treatment we need. these guidelines are what allows insurance companies to not only deny us coverage, but also to sue the doctors and practitioners who treat us for not following the IDSA guidelines for malpractice.

rather than spend time trying to figure out how to word this, i’ve just pasted the entire body of an email i received from lymedisease.org asking people to sign this petition to change the IDSA guidelines for lyme disease.

to add your name to the petition, click this link.

REMOVE OUTDATED IDSA GUIDELINES FROM NGC!

Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.
The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.
This is wrong because:
  1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;
  2. The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
  3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and
  4. The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.
Sign the petition to urge:
  • The NGC to remove the guidelines as its listing rules require.
  • The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease.

didn’t see my earlier link to the actual petition? that’s okay. you’ve got a second chance. i totally get that remembering anything is a challenge.

to add your name to the petition, click this link.