fighting hair and nail.

July 30, 2013

a long time has passed since i discovered that missing patch of hair on the back of my head. in this case of lady baldness, a long time is a couple of months, i think, but maybe it just feels like longer. i did tell you it got bigger, right? well, it did. it got bigger. i started to feel this constant low-level dread every time i saw more than a few hairs lying about. i felt like my hair was thinning everywhere. i was constantly running my hands through it, poking at my scalp and sifting about up there trying to ascertain whether or not i really was losing more hair. now that clumps of hair are not slipping through my fingers and falling to the floor, i can say definitely yes. yes. my hair was thinning.

to make hair woes worse, it would seem my body isn’t processing or synthesizing something right. but what’s new about that? nothing, except that this is the first time i’ve had weak, striated, thin nails and my hair is breaking and splitting like never before. this could be from sjogren’s syndrome, one of my constant autoimmune diseases (some of the others come and go).  i’ve increased my calcium and zinc intake but neither seem to have impacted my nail beds.  i’m wondering if the nail issue isn’t as closely related to the hair loss as i had assumed. my best guess is that this is a condition called beau’s lines, horizontal indentations that mangle the surface of the nail. only my thumb nails are affected and i don’t feel self-conscious about it but i think if each nail suffered this affliction, i probably would care more. so other than vanity, should i care more? probably. i probably should. all these little issues, the ones that feel insignificant when paired against something like, say, an atonic seizure that leaves me in a heap on the floor, they actually mean something. if i could stay more aware, be a little more mindful of these changes, i would have a much clearer picture of what’s happening in my body.

so, beau’s lines… at some point in my childhood, during the days of manual car locks (somewhere there were probably luxury vehicles with one button that controlled all the locks, but they were nowhere near where i lived), i slammed my left thumb in the car door. my thumb was lodged in the lock and someone had to go around the car, unlock the front door, climb into the back seat, unlock and open my door before i freed my thumb. the result of my carelessness was a huge thumb splint and a splendidly black and purple, nailless, digit with which i could gross out my friends. the longer lasting result of the injury was that the nail very frequently ended up with deformities, deep grooves and an uneven surface. this is one cause of beau’s lines- trauma to the cuticle bed. that explains the left nail. the right nail? i had no explanation and i have no idea why i didn’t think about it at all before recently. but beau’s lines are also caused by peripheral vascular disease and raynaud’s phenomenon falls into this category. i haven’t figured out why this would only affect two nails or why it’s worse in the summertime (when my circulation is vastly improved), but it seems the most logical culprit. damage to the vessels under the nail… anyway, it’s really just one more thing for me to monitor.

last week i finally made it into a dermatologist to get my bald spot (alopecia) needled up with cortisone injections. the hairless area was slightly larger than 3cm across (which isn’t really that small when it’s on your small head). the PA, mrs. m, gave me a ring of tiny injections and one in the center. the goal is that the steroids will jump start hair growth in that area. while i was in there, i figured i’d inquire about the scars, blisters, scabs, etc. mrs. m asked me if i’d had a biopsy of any of the marks. no. no, i had not. in fact, i hadn’t even thought about it. she asked if i would up for a couple of biopsies. of course i would be! any more information i can gather about what’s happening in my body is important to me. in this case, we’re hoping that the biopsies will be able to determine wether the blisters are a result of a drug interaction or if they’re vasculitis, as suspected by dr. j. i’m supposed to get the results back today. it’s pretty exciting that i’ll finally know what kind of torture i’ve been subjecting myself to.

meanwhile, my partner brought a cold into the house and i’m trying to squash that in its beginning stages. taking immunosuppressants and all the other stuff… creates some uphill battles. it’s okay. i haven’t taken my gloves off in years.



July 18, 2013

i started treatment on monday (and i concluded treatment on monday). at my last appointment, i was assigned the same regiment that i’d been on since i moved from intravenous to oral delivery. every treatment since i had sepsis has been pushing me one more step further into this reactivity that has become completely unbearable. was it einstein’s definition of insanity- doing the same thing over and over and expecting different results? well, that’s how this prescription felt. taking half the doses of medications that make me violently ill and create permanent scarring didn’t seem like the right solution. it wasn’t logical to me that i would have a lesser reaction to something that i’m allergic too… but i deferred. i reminded myself that i don’t know best. i reminded myself, though my disease combo is unique and lyme and co-infections manifest differently in everyone, i still don’t know the severity and range of symptoms, by-products of  the toxic die-off. so i didn’t protest too much.

seven weeks had passed since my last round ended. sure, i’d had two colds, an unpleasant stomach issue, been stressed, exhausted, anxious and had more than a couple of seizures (not tonic-clonic), but in all, i did it. this past weekend i overdid it and made double plans for three days in a row. i only managed to hit the fifth outing, but 5/6 isn’t bad. i wanted to see friends i hadn’t seen in years and i felt well enough to finally attempt to do it. i got home a 3 am on saturday (and then read about trayvon martin until 5 am). i cannot recall the last time i did anything like that.

this social schedule wasn’t easy and a few things made it harder. the lupus flare causes intense photosensitivity (important note: photosensitivity can be caused by a wide variety of things, including antibiotics like doxycycline). i forgot how hard it is to work around in the city, especially when you have dogs. heavy spf’s and tons of reapplications (there are whitish marks on everything. from my rear car door to my purse, you can see where i’ve been) have helped that issue. a new and incredibly irritating symptom has surfaced for me. if i start to overheat, even just a little, not breaking a sweat, just warm, my body starts having neurological malfunctions all over. sometimes it feels like my scalp is being stabbed with needles. sometimes, it’s the small of my back or a place above my knee (i actually just listed the places i can feel them right now). the pinpricks are increasingly worse. in addition to the heat/sun complications, i did notice other symptoms return, like aphasia and emotional lability.


this is a gentler, softer version of the real thing. the beautiful light muted the redness.

monday morning, i took care of a few final projects before incapacitating myself. i decided to stagger my antibiotics and antimicrobials into four doses, each at least four hours apart. first set of medications, no problems. the second set contained cipro, a strong anti-bartonella and anti-borrelia antibiotic. i immediately began to burn. my skin felt hot to the touch. the 100+ spots that had faded to brown, instantly mobilized and flushed magenta. my features swelled and thoughts bounced around my head at a rate too-frantic to unravel sentences. i couldn’t sit still because i thought i might lose my mind, so i cranked the a/c and starting working on little project in our studio apartment. at one point, i was trying to hang pictures. three times. three times i took the wrong measurements and hung a huge mirror in the wrong place. i don’t really even like where it is… so my cognitive function was greatly impaired. about four hours after i took the cipro, the symptoms gradually shifted to slower gears. six hours post cipro, i took the rifabutin dose. this reaction wasn’t quite as instantaneous, but it had a quick onset too. all those brown-turned-magenta spots flamed brighter and i was in agony. my face flushed- the bridge of my nose and the space below my cheekbones gleamed red. my ears, inside and out, seared with heat and pain. even my shins and my feet sprouted inflamed patches. my eyes were bone dry and i couldn’t sit still.

i did everything i knew to do in order to not only push it through my system as fast as possible, but to also quell any allergic or histamine response. i used all my go-to rescue meds. even after i exited the acute phase of my reaction, many symptoms linger. the burn-damage has created tight, red skin that itches mercilessly and tears like delicate paper. i can’t go outside because i can’t take the heat, humidity, air-pollution, and sunlight. even if i could brave those things, i look monstrous. “what would you think happened to someone who looked like this?” i asked my partner. he shrugged and said, “no idea.” but i pushed. i wondered what i would think. “i guess i’d imagine that they had second degree steam burns or something,” i said.

on day one of treatment-gone-wrong, i wrote desperate emails, begging for help. after the antagonistic rifabutin, i paid for an online consultation with a provider at my primary lyme doc’s clinic. i said that i wasn’t going to take the cipro again. it seemed logical to assume that my immediate reaction to cipro indicated an allergic or highly sensitive response. the rifabutin, according to my unsubstantiated claim, catalyzed an incredible herx. i don’t know if i’m allergic to that one too.

so what does the good doctor think? he believes that the skin eruptions are likely related to vasculitis. lyme can and does infect the lining of the blood vessels and when killed, can result in these types of severe and painful herxes. but this could just as easily be a “drug reaction,” though the medical team seemed dubious of this cause. dr. j “feels that your reactivity is also heightening because your immune system is getting stronger and the antio-biofilm measure are exposing more infection; therefore it isn’t just the antibioitics doing the fighting, but your immune system as well. a large part of this is related to die-off.” so maybe all of this is just a response to killing my co-infections, but they did agree that i could stop these meds. they came up with a new plan, one that’s gentler, but i don’t start it until next week. it’s going to take my skin a lot longer than a week to heal, so i’ll begin the monday’s new protocols already in the hole. i’m just praying that this targets something else.

back at the ranch (upstate), the air conditioner keeps breaking. i’ve discovered another aggressive spread of aspergillus (mold) and decided to treat as much as i can down in the city so that i’m not also dealing with toxic mold exposure. but i’m headed back there tonight and so begins the real, expensive process of tackling mold. the remediation is involved (understatement of the year), but we can’t live with toxic mold and we can’t sell the house to anyone knowing that this problem exists.

one great thing about doing treatments in the city is that i can get just about anything delivered to my door. last night, i went a little overboard on seamless, a broad restaurant delivery service that pays itself by charging the restaurant, not the hungry creature that opens the door (it does take 20%, so if your restaurant already delivers, it’s best for them if you ordered directly from the restaurant). how do i know that i was a tad indulgent? because i started off today with a blueberry cookie from momofuku milk bar. this is not my favorite cookie, and it’s possible that the butter is going to kill me, but if i never try them, how will i know? milk’s vegan, gluten-free “pie” and cookie are pretty damn delicious too. just to make you feel better, the first ingredient is coconut milk, not sugar. yes, sugar is second.

i have a stomach ache. really. at least i earned this one the fun way- over-eating until it wouldn’t matter which pair of cookie-pants i was wearing, they still wouldn’t fit.

adrift at sea.

July 8, 2013

of all places, i’m stuck in a starbucks, waiting out the rain that wasn’t supposed to come until later in the day. my seafarer’s bones knew better. Being the only one on the street with an umbrella over your head is, at least, a small victory. and when you have a solid hour to kill, it’s best to be somewhere with free wifi. oh starbucks, you got me this time. and your coffee still sucks.

i’m in d.c. for my first appointment with dr. j since late april. the last time i left his clinic, it was to have my picc line pulled at george washington hospital the following morning. i’d been given instructions for three consecutive rounds of oral antibiotics and antimicrobials. did i make it through two of those rounds before collapsing into a heap of blisters and brain fog so thick i could hardly remember my own name? i don’t know that or even when i last wrote. though i could easily look back at previous posts, for some reason i don’t really want to.

i’ve hit a wall with my treatments and my writing. when asked how i’m doing, i don’t really know what to say. i’m okay. i’m doing more than surviving. to a greater degree than anytime during the past decade, i’m functioning and taking on responsibilities outside of my body, outside the house, but half the time i feel like i’m just treading water. i don’t feel like i’m going to get crushed by a massive wave, but i do feel like i’m being slowly pulled out to sea. i guess i look better and with that outward appearance, there’s a general assumption that i’m better- as in healed, as in, done with my tick-borne disease treatments. even my lyme rheumatologist casually mentioned that, in her opinion, i was through with my lyme treatments. BUT I STILL HAVE SYMPTOMS. how can i be done? and i’m the one who caught the fact that i was in the midst of a massive lupus/mixed connective tissue disease flare-up. this doesn’t give me a lot of confidence in my current care. i feel like maybe no one knows where i should go from here and, to be honest, i don’t want to captain this ship. it’s easier when i’m just following directions, even when i’m miserably ill under those commands.

i’m hoping that dr. j will have some different answers, more solutions for me, but i’m also scared of going back on treatments. it’s like i’ve had this small taste of what living is like and i want more. it’s been my experience that when i take the “more” without crossing all the t’s and dotting all the i’s, i crash harder. i pay the iron price when i try to rush to the end. in my heart, i know that i haven’t cleared these infections yet and i don’t want to stop until i am well, truly well.

the more that i learn about borrelia burgdorferi, the deeper my respect for it. this is a voracious pathogen, one that has outsmarted the best of medical practitioners and researchers for years. not knowing what to do next, my personal research has turned incredibly clinical. i’ve been reading endless articles about Bb, how it synthesizes manganese instead of iron (and the body’s way of fighting pathogens is to starve them of iron, which obviously doesn’t work with lyme), how it can wear a b-lymphocyte cell as a cloak and weasel its way into any part of the body, how very little we know about it… how it changes our dna and how, even when i am finally rid of it, it will always be a part of me. profound. my life has been shaped by this disease, more than i’ll probably ever comprehend and i’m wondering now what kind of effect it will have on my future. like, for example, if it changes my genetic structure, what does that mean for my future offspring? how deep do the ramifications of having a raging and devastating infection for decade/s go?

i’m also hitting a point where i’m not sure exactly how to be of service to others. i have so many friends, friends of friends and family and people who have stumbled across this blog who need help, who want advice, who feel frightened and alone and desperate. i want to help them all, but don’t know what i can do… i’ve hit a point where my issues and hardships with lyme are unique because of my autoimmune diseases and i fear that because my path has diverged, my experience might not be as useful for others (to learn anything from). since i have no idea where it is that i need to go, i don’t even know what to say to those people who reach out with co-infections and autoimmune diseases. i’ll figure that out in time. all i can really say right now is that you are not alone. i’m scared too. i’m confused and wishing for someone who had answers, for someone to fix me, for a deeper understanding of what’s happening in my body so that i can fix myself.  it’s probably critical for me to say that i still believe that i am going to beat these diseases. i am going to be well and even if i don’t feel like it all the time, i am whole, as-is (though to be real, i’m not so cool with the growing bald patch of alopecia on the back of my head. lady baldness is just cruel. honestly, universe. it’s cruel).