house of cards.

April 1, 2012

when i was in junior high, or maybe just a freshman in high school, i ended up with a stack of details magazine back issues. this, you should know, was back when details was edgy and cool, at least for a kid my age. i used to pour over every word in those magazines, saying that someday i was going to take the green tortoise bus across country (upon looking at their website, they are definitely not providing the same kind of tours). i had dreams of this bus being like ken kesey‘s bus, further. i thought i’d be smoking pot, dropping hallucinogens and bathing naked in hot springs with strangers. i thought i’d be my own merry prankster. okay, so hippie kid dreams aside, there was an article in one of the magazines that listed the top ten worst diseases to die from. the only one i remember from that list was scleroderma, a hardening of the skin that could cause paralysis and organ failure. this list was sensationalistic, but in 1999 when i was diagnosed with scleroderma as a component of my mixed connective tissue disease, i instantly remembered that page out of details.

last night, while feeling awful and laying on the couch watching back-to-back episodes of one of those one season crime dramas, i started to pay a bit of attention to the rough, patchy areas on my fingers. during the winter, i assumed that my reynaud’s, which expands and contracts the vessels in my fingers, was to blame for the painful splits down the center of my finger pads. my right hand started to look like a piece of shattered glass. i figured that as the temperatures warmed and my reynaud’s became less pronounced, that my hands would heal. i was wrong. instead of healing up, the skin on my fingers began to harden. then i remembered i have scleroderma. scleroderma is an autoimmune disease in which the body produces excess collagen, causing areas of the skin and potentially internal organs, to thicken, harden and render the site of attack, unmovable. i haven’t had any scleroderma like symptoms in a while and in my file it’s noted that i may have CREST syndrome, a subtype of scleroderma that can affect the skin on arms, legs, hands, feet and face and sometimes have organ involvement including digestive issues, and heart and lung problems. there are five primary components of this type of scleroderma and i’m currently showing three of these: reynaud’s, skin hardening and calcinosis in my fingers.

enter the panic. what if my skin stays like this permanently? what if it gets worse? what if it starts to look like these horrible images on google? what if i lose my mobility in my hands? but the real question, the one i started to ask once i stopped looking at horrific pictures of the worst cases of scleroderma was, how do i get treatment for this while i’m undergoing treatment for my lyme and coinfections? my rheumatologists don’t understand anything about this iv antibiotic protocol. one of them doesn’t really believe in chronic lyme, though he’s curious to see if these treatments work for me. i’m hoping that once i get well, i’m able to be the case study that changes his opinion. i’ve written a letter to dr. j’s staff, asking how to proceed and i’ll give my rheumatologist in iowa a call tomorrow, but i don’t know what i’m going to be able to do about it. slather my hands with shea butter and vitamin e oil? that seems my only current choice of action.

being chronically ill, infected with a bunch of tick-borne diseases and having a host of autoimmune diseases, isn’t a path i recommend going down. there’s a lot of branches, debris, and beasts along the road. all i’ve done, is uncovered another roadblock that i have to find a way to push through. where’s that damn bus when you need it? right about now, i could sure use something that changes my perceptions of reality.

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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.

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.

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.

when we moved to this town a year and a half ago, i pulled a tick from behind the dog’s ear. there was a giant red welt that wasn’t getting better or smaller. in a moment of concerned desperation, i took the dog, mars, to the closest veterinary clinic i could find. the staff were the exact opposite of the staff at our brooklyn neighborhood clinic. they came out from behind the desk, sat on the floor with a fistful of dehydrated, raw dog treats and squealed “aren’t you the cutest dog ever?”

mars surrounded by felt carnage.

back in an exam room, i instantly wanted to be friends with the veterinarian. she also sat on the floor while my dog licked every inch of her face, and she laughed with every ounce of her being. i told her about how my dog didn’t know what to do in our wooded yard and had resorted to peeing on the deck, the closest thing to concrete within an acre of the door. i showed her the tick i’d pulled off of mars. apparently, it was a brown dog tick, which can cause canine ehrlichiosis, but does not carry lyme. she asked me what we were using for tick prevention and had we vaccinated her for lyme? “no,” i said. “the odds of her getting a tick in the mccarren dog park weren’t really so high.” she asked me if we had tried anything natural, like clove oil, to help deter fleas and ticks. “no,” i told her. “but i would love to.” she gave me a bottle of ectopamine, a blend of essential oils, to spray on the dog’s fur to kill and repel ticks and fleas. she also recommended that we vaccinate the dog for lyme. i agreed. my first dog, the one who has grown old at my parent’s house, suffered a devastating bout of lyme disease, and i didn’t want a repeat of that. i confessed that i was surprised that she had offered me a natural solution to the problem, to which she responded cheerily “we’re a integrative, holistic clinic.” it was kismet. i had unwittingly taken my beloved dog to get the same kind of medical care i seek for myself. of course, at this point, i had not yet been diagnosed with lyme co-infections. lyme is a zoonotic disease, which means that it can be transmitted from an animal to a human. except for the fact that lyme caused joint swelling, particularly in the knees, i didn’t know shit about shit.

yesterday, i took the cat and the other dog, minion, who loves to torment the cat, to the vet. i told her that over christmas, while chasing canadian geese, minion had broken through the frozen ice of my parent’s pond, been rescued by my brother, who threw a canoe onto the ice, tipped the canoe, swam to the dog, threw the dog in the canoe and swam back to shore- all while i was in the shower. “impulse control,” i said. “he has none.”

“oh,” she said, kissing the top of his head, “all he needs is a little obedience school.”

minion and mars falling in love with carpeting at my parents' house. yes, they are wearing matching sweaters. i'm only slightly embarrassed about that.

“believe me, i know,” i told her, “but i can’t find a six week window to actually commit to. i’m getting treatment for chronic lyme, babesiosis, and bartonella, in addition to my autoimmune stuff, and i just can’t get it together to get him into the same training his sister had.”

then my vet, my future friend, told me that she had lyme disease. she said that her daughter had suffered from bell’s palsy, facial paralysis, and had been hit really hard by lyme. her two-year-old had also tested positive for lyme. i asked if she contracted it gestaionally. she wasn’t sure. they had all been treated by an integrative lyme specialist and had recovered. then we talked about all the other people we knew who had it. a receptionist at the clinic had to quit because of her lyme disease. i told her about the research showing that songbirds had been transporting lyme to previously unaffected regions. “it seems so obvious,” i said, “but it totally blew my mind when i heard that.” our conversation went on for awhile, and i, for once, won’t go into the details. i left with a feeling that has become too familiar; lyme disease is everywhere, affecting more people than we can imagine and we have a system that, despite overwhelming evidence, pretends it doesn’t exist. we’re sick. we’re losing our jobs and our livelihoods. we’re literally dying from this disease and we can’t get adequate treatment.

you know how much an eight month course of iv antibiotics costs? it’s somewhere in the neighborhood of  $35,000 (this is a reliable estimate, and not an individualized bill). my insurance won’t touch that. i’m not in a financial position to buy myself a luxury car (that would cost about the same, right?) or even fix our broken chimney, but my partner, my family, and i will figure out a way to pay for my treatments. even though it’s going to be a struggle, i’m lucky and blessed to be able to navigate a price tag like that. what can the rest of the chronically ill, lyme patients, who can’t find that kind of cash, do? i don’t have a solution yet, but i’m going to fight like hell to find one. i don’t want to live in a world where only the rich and the middle class can cure their diseases.

i just hung up the phone after an hour + conversation with my mom. i feel like i should first express how much i hate being on the phone. i hates it. i hates it. i hates it. while i generally feel okay about calls after i’m on them or once i hang up and feel finally informed about how my sweet friends across the country are doing, i get a bit panicked knowing i have to make or receive a call. so there’s that (admittedly, i might have written in this part to give shape to why i dodge phone calls.). my mom is one of the few people i talk to on the regular, and really, i can’t evade her for very long before i give in and answer. this phone call began with talk of exactly which power tools a la christmas i was asking for. did i need an air compressor with accompanying tools? yes to a  finish nailer. no to a brad nailer. aren’t table saws pretty expensive? they can be but i’m not feeling too choosy about that tool. why do i need an impact driver and a hammer drill? at the end of the tool gift conversation, i don’t think we were much closer to what i’m going to end up with, but it’s always fun to talk new tools.

then she moved onto the subject of treatment logistics in january. the jemsek specialty clinic is located in washington d.c. and i live in the hudson valley in new york. it’s about a 5-hour drive in a good traffic flow, pretty far to commute when you’re feeling like shit.

where am i going to stay? i found fully furnished apartments that are $50/day $350/week that will let me have my dogs or my cat with me. they’re close(ish) to the jemsek clinic and have a parking garage.

can’t i stay with friends/should i really be alone? it’s so hard for me to be sick in front of other people. i’m like a wounded animal that wants to crawl back to the den to nurse its wounds. unless it’s my mom, dad or partner, i expend too much energy trying to keep whomever is in my company at ease about how i’m doing, that it’s detrimental to me.

what if you really need help? then i will ask for it. one of my best friends lives in d.c., but with a brand new baby, i have no intention of leaning too heavily on her (are you reading this? i promise to ask for help when i need it, but i will not burden you! i love you guys too much to take any part of your time at home with the baby. <3). i work at a women’s music festival every summer and have an incredible network of strong women whom i can ask to give me a hand. it’s really difficult for me to ask for help, but i know i might need to do that and i will if i have to. my partner will come down on weekends and support me to the best of his ability, but he has to keep working. we can’t both put our lives on hold. my mom is planning on being with me as much as she can. and some of this i feel i need to do on my own.

are these treatments really necessary? yes. i believe that a combination of oral and iv antibiotics is the only chance i have at killing off these spirochetes, lyme cysts and biofilm. the more i heard at the ilads conference, the clearer that became. oral antibiotics will not effectively destroy the cysts or the biofilm. also, i don’t yet know what exactly this is going to look like. i’ll find that out at my consultation in january. on my own, i’m projecting like hell, thinking about all the possibilities of what course we’ll take, but in reality, i have no idea.

i’m worried about how dangerous this could be. i know. i am too. it seems that any symptoms i’ve experienced from my tick-borne illnesses could return during treatment. this means that i could have seizures, hallucinations, myalgia, joint pain, and anything else i’ve had. the herxheimer reaction is going to be significant. and painful. and potentially dangerous. but when i look at how significant, painful and dangerous my diseases are/have been, what’s the difference? at least this is suffering with a (potentially) positive outcome. that is/was pain for pain’s sake.

i’ve been feeling pretty fearful, but having to explain to someone else why i’m doing this and why i believe it will work has helped me to come down from the ledge. if worrying is a lack of faith, i don’t need to worry. i’ve got faith in spades.

writers never die.

November 22, 2011

i’ve taken a physical break from the blog, but haven’t stopped thinking about writing. there’s always something to report, new developments and different treatments, but for the first time in a really long time, i’ve been quite busy with work! due to a new medication, i was able to work about 7 pretty decent days before my body crashed. and even though i’ve had to put in a lot more hours since starting to feel crappy, i haven’t picked myself back up yet. i need a solid week of couch time to recover but with countless hours of leaf blowing (we have 1.5 acres of woods and we’re surrounded by tidy suburbanite plots complete with lawn services), that isn’t going to happen right away. the new medication isn’t the miracle it seemed to be and my energy is starting to dwindle. actually, my energy is gone, but i’m still on the move. my new jet-pack leaf blower may not be enough to bridge the gap between the two feet of leaves covering our beautiful woods and my swollen joints and rigid muscles, but it’s better than a rake. i’ve been in this for enough years to know that once i push my body past the point of no return, the harder i’m going to fall and the longer it will take to recuperate. i’m pretty sure i have a grip on my current psychology. i’ll explain in a minute.

two weeks ago, long after the sun had slipped away, i got a phone call from a washington d.c. number. it was the day before one of my dearest friends was due to give birth and i excitedly picked up the call thinking it was going to be baby news. instead, it was dr. j‘s appointment secretary! she said that my lyme doc had called in a referral and that she was sorry to be calling so late, but she had to check with dr. j to see if he remembered me. he did recall our conversation at the ilads conference and he wanted to schedule an appointment with me. like most lyme doctors in it for the long haul, he does not take insurance and i had to put down a deposit of $500 for my consultation. i’ll pay the remaining $250, plus whatever costs associated with baseline testing when i’m at the appointment. any feelings i had about dropping the cash on this, i washed away with the not-so-reassuring thought that this is probably just a drop in the bucket for my total treatment cost. plus, if i look at all the years of copays, no-insurance-pays, medications, travel expenses- all in the name of misdiagnosis, it’s not really that much money. i’ve spent tens of thousands on medical expenses since i was 18. and i’m praying, with every fiber of my unitarian being, that this is the beginning of the end. i go to see him in mid-january and i’m chock-full of expectation- a somewhat dangerous place to be.

so back to the whole psychology thing. i’m anticipating some genuine suffering in my near future. knowing that i’m paying out-of-pocket for this treatment has sparked my deep-seeded fears of financial insecurity. when i begin treating the burgdorferi/babesiosis/bartonella (i wasn’t sure i really had the latter, but after seeing pictures of bartonella rashes, my lyme doc and i are fairly certain i do) with pulsed iv therapies, i’m going to be sick as hell. the only way my brain can get behind it is to convince itself that it’s only going to be that bad for a few months, but the reality is that it could last anywhere from 12 months to a few years. but i’m trying to stay present, to be right here, right now. in spite of tons of grounding meditation, i feel like one of these fat ass squirrels (no really, the ones in my yard- they’re huge) trying to gather everything i’ll need to get through the winter. i’m pushing myself harder than i know i should because i’m scared that come january, i won’t have the option of pushing through. it’s the chronically ill version of “sleep when you’re dead.” i’m afraid that whatever i don’t get done now, will stay unfinished/broken/dysfunctional until the summertime. that’s not really staying in the moment, is it?

(also, please don’t get it twisted. i’m so, so, so grateful for the chance to see this doctor.)

at some point in my early 20’s, long after i had become sick, been diagnosed, and undergone varied treatments with minimal success, i started to think it wasn’t going to be in my cards to give birth. i’m someone who has always wanted children, but not the kind of person who needed to have a biological kid (or so i thought). there was always some part of me that knew it might not be my path. and so i started coaching myself into the idea of adopting, but somewhere in the back of my heart, i kept this hope that i’d be able to do both- carry and adopt. a couple of years ago, one of my rheumatologists told me that i would not be able to get pregnant. he said that if i did get pregnant, because of my lupus anticoagulant, i would most likely suffer miscarriages. he also said “if you were to, oh, say, hit your head hard enough, you could have a brain bleed that could cause a stroke or cardiac arrest before anyone even suspected anything was wrong.” i left his office, collar pulled high against the cold wind, eyes lowered. “so what?” i thought. “this is what you always suspected. you always knew this might not be a possibility.” i felt like having feelings about my infertility was a ridiculous waste of energy, but that didn’t stop the feelings from coming anyway. i had one of those new york moments where i stood in a doorway on the upper east side, my umbrella cocked out into the rain and cried into my hands. no one gave me a second look as i stood on the corner of 76th and lexington sobbing in the november rain. in december of that year, i met with a high-risk obstetrician to discuss what my future as a mother might look like. “if i may be frank,” he said, “it won’t be the easiest thing for you. you’ll have a significant chance of fetal loss, particularly in the first trimester, but if you make it past the first few months, your odds improve.” he told me that indeed i could have children, that my rheumatologist was wrong, but that i needed to be in optimal health in order to foster ideal conditions for my pregnancy. i left that appointment feeling like having a biological child was possible. all i had to do was get stable for the first time in my life.

when i saw that dr. charles ray jones was giving a talk on “pregnancy and tick-borne diseases: gestational lyme” in the ILADS conference line-up, i made the decision to attend the conference. during my first appointment with my ILADS doctor this summer, i asked about pregnancy. “have you and your partner considered adoption?” she asked me. “i can’t say that i recommend you getting pregnant. you can certainly do it, but there are a lot of risks. it might be best to start an adoption process.” 31-years-old and in a loving partnership, my biological clock chiming hourly and with so many of my friends- straight and married, queer and single- bumping up the population, it’s hard to stay patient. my partner and i have had some intense talks about adoption, but at this point, we know that with the hardest parts of my treatment ahead of me, i probably can’t handle the stress of parenthood right now. the chance to listen to dr. jones break down the risks and realities of a lyme pregnancy was exactly what i needed.

seated in a wheel chair at the front of the main hall, dr. jones tells the audience “i’ve never used a computer before. this is going to be fun!” at 82, the leading pediatric lyme physician has been under fire from the connecticut medical board for his long-term treatment of children with chronic lyme co-infections. he has worked with over 10,000 children from all around the world and in spite of his age and continued persecution, he keeps working.

all of the following information was taken from his presentation talking points. many of these statements or statistics are direct quotes.

there are three known ways that lyme disease can be transmitted- via a tick bite, gestational, or through breast milk. in an infected mother, the borrelia burgdorferi spirochete can cross the placental barrier, infecting the fetus with lyme. jones reports that the transmission is simliar to that seen in gestational syphilis cases. in a case study of 102 children with gestational lyme, where the mother was either untreated or partially treated for lyme, 66% reported a difficult pregnancy. 41% breast fed and all the children in the study improved with appropriate antibiotics.

some of the most common symptoms of gestational lyme include: hypotonia (“floppy baby”), irritability (accompanied by impulsivity), cognitive problems including learning disabilities and mood swings, fatigue and lack of stamina, pain, low grade fevers, pallor, sickly, and dark circles under the eyes, arthritis or painful joints, unspecified rashes, GERD and vomiting with coughing, frequent URI and otitis, noise, light and skin sensitivity, eye problems, developmental delays including language and speech problems, and more. about 10% of cases presented with symptoms consistent with the autism spectrum.

in one study, pregnant women with lyme who were treated with 2 different antibiotics throughout the duration of their pregnancy had no reported presence of lyme in their babies. 25% of those treated with only 1 antibiotic had children born with lyme and 50% of mothers who were taking no antibiotics had children born with lyme. in a different study, in a  mother being treated for her active lyme, 85% of newborns were normal. in those not receiving antibiotics, 33% of neonates were born normal. however, there were many adverse events including miscarriage, stillbirths, perinatal death, congenital anomalies, sepsis or chronic progressive infection. women who also had babesia need to take mepron to help prevent transmission of babesiosis.

if born with congenital lyme, children need to be treated immediately to give the best chance of eliminating the infection and reducing the potential for long-term damage. jones states that kids fare best with agressive treatments that last for a sufficient duration.

live spirochetes have been isolated from breast milk and nursing women with active lyme need to be treated with appropriate antibiotics in order to prevent disease transmission.

many mothers infected with lyme are unaware of their status, and subsequently do not know to seek adequate treatments. lyme symptoms in babies are often misdiagnosed or overlooked, leading to late diagnosis and treatment. the longer the child goes without being appropriately diagnosed, the more severe and complicated the clinical course.

it is not known whether infection in the father is a factor in gestational lyme. there are anecdotal reports that an infected father contributed sperm in IVF to a mother previously uninfected and the child was born with gestational lyme.

after listening to all of the information provided in this lecture, i felt a little better about my odds of having a safe pregnancy someday. because of my autoimmune diseases, i realize that this data is somewhat limited in how it relates to my situation. in regards to pregnancy and lyme disease, it seems that with close monitoring and consistent treatment with two antibiotics throughout the duration of the gestational period and the duration of breast feeding, one’s odds are favorable. dr. jones also stated that a patient need not wait for her lyme to be incredibly stable in order to try to get pregnant and that was, perhaps, the most important thing for me to hear. there are still a lot of risks involved with pregnancy and high rates of fetal loss, but it’s not impossible. for now, my partner and i are putting both adoption and pregnancy on the back burner. my biological clock comes second to my treatment. period.

i haven’t made it home yet. i have high hopes that it’s going to happen for me in the near future. after flying from toronto to nyc yesterday, i haven’t escaped brooklyn. following a chance run in with one of my best friends yesterday, dinner with my ny family, a sweet day today of seeing friends, cashing in on a free massage (compliments of my amazing partner), checking in with my primary care doctor (who is unparalleled. she’s gone to bat for me when no one else would), i’m now stuck in my dude’s office. i’m patiently waiting for him to wrap things up so we can make the 60+ mile drive home. in the mean time, i thought i’d write up a few thoughts post-ILADS conference.

for so many years, i’ve felt pretty in the dark about my health. in the late 90’s, when i was first diagnosed at the mayo clinic with a mixed connective tissue disease and other autoimmune diseases, i thought i could get in front of it. i believed with every fiber of my naive little heart, that if i followed doctor’s orders, all 9 of them, that i would recover. i thought i’d improve. i thought i’d still have the life i imagined for myself. by no means did i really understand what was happening to me back then. fresh out from under my parent’s roof, i hadn’t made a habit of making my own decisions yet. i deferred to everyone else’s expertise and judgement. after a couple of years of getting progressively worse, plateauing, getting slightly better and then crashing into a void of all new ailments, i gave up “the know.” it just wasn’t possible. i started to think my doctors didn’t have a clue what they were talking about, save my osteopath and therapist, who both helped me immensely. anyway, i tried to keep up with the ever-changing landscape of my sick mind an body, but i just couldn’t. finally getting a lyme co-infection diagnosis was the first time in a long, long time that i considered the possibility that i could really participate in my wellness. i mean, i’ve done A LOT on my own to try to get better and don’t get me wrong, it’s been beneficial. i’ve changed my diet, my sleep, my chemical intake, my relationships, my spirituality, my everything, but i’ve stayed sick.

i left the ILADS conference feeling empowered for the first time. ever. i have new options to explore, new doctors with alternative treatments, new possibilities and tons and tons of information. and to make things even better, my primary care physician sent me an email today saying that she was researching a lyme conference that she could attend and she found the ILADS one, but a little too late. i love that she’s looking into lyme education. i think all doctors should be more like her- invested in their patients and active in new developments in medicine. so tonight, i feel exhausted and i really, really need to just transport myself to my bed, snuggle my furry little loves and sleep for 12 hours. but when i crawl into my own bed for the first time since october 23rd, i’m going to fall asleep feeling like there’s a light at the end of this tunnel and with the knowledge that i can somehow make it out of the darkness.