the hope of healing.

October 30, 2011

yesterday i asked the expert panel a question about the uses of teasel root and colloidal silver in treatment of complex lyme. it was one of the first questions answered! in a later post i’ll address some of the great holistic, natropathic and herbal bits i learned. all three of the questions i submitted during this conference were addressed in this forum. this was exciting to me, of course, because i wanted to hear the answers, but it also seemed significant that in a room full of doctors, the questions posed by a patient were among the first to be asked. makes me think that we need to really overhaul our patient-doctor communications beyond the exam room.
in today’s final expert panel, i asked this question:
how do you proceed with a patient who has a recent diagnosis of lyme co-infections and a 15 year history of severe autoimmune diseases (mixed connective tissue disease, lupus, scleroderma, sjogren’s and more)? consideration- 14 years of intense immune suppressive therapies and constant prednisone use.
dr. joseph jemsek, founder of the jemsek specialty clinic in washington dc, said,
this is a complicated question. predinsone knocks everything down. if this patient came in, we’d have to be sure that there is lyme. rheumatology does have their own diseases. (<–that was a joke.)
then he was interrupted by dr. daniel cameron, who is the practitioner i introduced myself to in the hope that perhaps i could continue my care with him when my doctor’s practice goes private. he started talking about pregnancy, which was completely unrelated. honestly, i was so interested in what dr. jemsek had to say that i had trouble concentrating on dr. cameron’s response.
dr. jemsek uses unique and incredibly aggressive treatments for his patients. he’s featured in the documentary, under our skin, as mandy’s doctor. though her treatments nearly take her life four separate times (something you won’t see in the film), she has come so far that you would hardly recognize the person from the film. dr. jemsek is incredible, an inspiration, and has fought to continue practicing after being charged with unprofessional conduct and having his license suspended for a year.
the remaining panel participants had this to offer:
we have to always watch for the infection focus. consult with rheumatologist. look at the balance. look at adrenals. use quercetin. it’s very effective for overactive immune systems. always look at gluten. even if you’re not gluten sensitive, it’s so disruptive to the intestinal track, it’s shown that you can cut 5 years off your life and increase your chances of getting autoimmunity. glutamine is effective for healing a leaky gut. butyrate is a good compound to heal.
after the panel discussion had ended and the conference had come to a close, i approached dr. jemsek.
“i just wanted to tell you how grateful i am that you read my question. i’m the person who asked the question about the autoimmune diseases and treating co-infections. i’ve followed some of your work and was really interested in hearing what your thoughts were on how to approach my treatment,” i said. we talked a little bit about my diagnosis.
“i know this is a long-shot,” i told him. “but is there any way you’d be able to see me as a patient?” he got out a pad of paper and a pen and told me to write my information down. “it really helps if you have a referring physician,” he said.
“my doctor is here and will absolutely give me a referral.”
dr. jemsek’s treatments are intense and long-term, so he asked me where i lived. “i live in new york, but i have a lot of friends in d.c.. i will work something out if it means i can see you.”
“let’s set something up,” he said, shaking my hand.
i’m so, so excited and so, so nervous. i know that with real treatment there are a few considerations. one of those is the cost. this is not going to be cheap and i’m already trying to figure out how i can get a medical loan. the second goes back to the herxheimer reaction. i am going to get worse, much, much worse, before i get better. i listened to some of dr. jemsek’s protocols and know that if he does take me as a patient, i’m in for a couple of years of graded therapies, some of which can be phenomenally dangerous and all of which will be painful. but there’s a silly little saying i learned about fear: Fuck Everything and Run or Face Everything and Recover. 
suffering be damned, i’m going to recover and i just might have landed one of the best doctors in the world to help me do it.
(also, i want you to know, i feel really, truly lucky right now. ❤ )

it’s the last session of the conference and the three presentations of the morning needed to be slowed down in order for me to understand them. seriously, if they spoke as slowly as if i was just learning english, i would have been able to really follow the content. i’ll just have to revisit my ILADS disc and absorb it at a different pace.

lorrain johnson, jd, mba, reported on evidence based medicine: “evidence, evidence gaps and the role of stakeholders,” which covered a lot of bases about the role that evidence plays in creating health care policy. those of you who experience the enormous gap between what you tell your doctor you’re feeling and what your insurance company allows to be done about it, know what this evidence gap really means. these discrepancies, to put it mildly, are the guts of that beast. essentially, there is so little evidence (beyond the anecdotal) of lyme disease activity, replication, duration, treatment, pathology, etc. that the policies and guidelines for treatment are so far removed from reality that they’re often not even the slightest bit helpful, let alone curative. it’s like the patients and the medical practitioners are on two different continents. i’m not referring to the ILADS doctors and lyme literate doctors that are here. i’m talking about your average-run of the mill primary care doctor, rheumatologist, dr. whomever, who doesn’t believe that chronic lyme exists. some of you might know that the IDSA guidelines, which were written years ago, were created in a language that would help insurance companies deny patients care AND they were written by people who had a vested interest in private, for-profit research companies and insurance companies. and by vested interest, i mean that they got a paycheck. these IDSA guidelines are what prohibit prolonged treatment, what allow insurance companies to sue doctors treating chronic lyme, why these incredible, compassionate people lose their medical licenses and why many lyme literate doctors and specialists do not take insurance. these guidelines are the reason that i can’t get iv antibiotic treatments- which is my best shot at getting well. they’re why my physical therapy appointments are about to run out. they’re evil, self-serving and damaging to lyme doctors and their patients.

ms. johnson talked about a survey launched by on october 3rd. i know i wrote about the survey, but i don’t think i ever published it.

THE SURVEY: launched a patient survey on guidelines and patient preferences. within a week more that 2500 responses came in. here are some of the results:
80% distrust IDSA guidelines.
76% choose physician based on which guidelines they followed (IDSA or ILADS).
patients think treatment guidelines should have choices among treatment options and allow doctors to use their own judgements when patients don’t get well. overwhelming responses said that the physician and patient should be able to make treatment decisions together.
many patients reported being too ill to work.
***the patient preference survey is still open and available here. *** this is really so important. in order to be heard, to be treated with dignity and efficiency, we need to make ourselves visible. it just takes a few minutes. if you have lyme, please, please fill it out.
the results will be taken and provided to IDSA and ILADS to help them reconsider diagnostic and treatment guidelines.

sanity restored.

October 30, 2011

i’m sitting in bed, having given a cat the boot, and i’ve decided to stop being so alarmed. what’s the point? it’s not like i have the financial luxury of selling my house. i’m not at a stage of my spiritual development where i’ve given up my attachment to things. i’m a taurus, for god’s sake. we crave stability, a home and nice things. so when someone who’s much smarter and much more knowledgeable tells you that you’re going to die (but your cat will die first) if you don’t purge your entire life, it’s a little unsettling. the thing is, when you are chronically ill, you get desperate. you’ll look for solutions wherever you can find them. i once spent two days researching a set of $3k saladmaster pans because my mom told me that the metals from my cookware were depositing an excess of toxins in my system (did i mention this before? typing it seems familiar…) and that saladmaster made for clean food. in the end, i didn’t buy them and right now, i’m not buying this mold shit.

the doctor is probably right. for a person like me who has complex, multi-system illnesses, some of which are incurable and others that are questionably curable at best, mold is going to wreak havoc on my delicate body. it’s not going to do me any favors to stay in the house and prance around in my moldy clothes, but neither is worrying about it when the alternative isn’t a feasible one at this time. i’ve resolved to buy the santa fe dehumidifier with its $1800 price tag. i was already planning on tearing out the drywall and replacing it with green board (which is water and mold resistant). we’ll tear out the carpet just like we’d planned. i’ll keep the air purifiers running 24/7. and i’ll know that if i keep getting worse in spite of consistent treatment, adherence to my restricted diet, restorative sleep, moderate exercise, weekly physical therapy, and a strong spiritual practice that maybe, just maybe it’ll be time to reevaluate my house. oh, and i’ll test the mold and keep my fingers crossed that it’s not that deadly, bioweapon shit. that’s what i can do and i’m not going to worry my pretty little head about what i can’t.

embarrassing as my previous post may have been, i feel like it helps illustrate some good points. it proves to me that i really want to get well and that i’m willing to go to any length to do it. the thing is, demolishing my current existence would completely level me. my body and mind, after all i’ve been through and continue to trudge into, could not handle the stress of it. if my ass gets locked up in an institution, i wouldn’t be living with mold, but i wouldn’t be very happy either. additionally, i want to revisit the sick-person-desperation. it sucks to do everything you can possibly do and not get better. i know. i’ve done it. i’ve made changes i never believed possible with the hopes that it would be the one thing that could swing the scales the other way. i don’t want to stay desperate for answers. i want to stay open, willing and hopeful. this doctor was just trying to help me. she saved her own life by drastically reducing her toxic burdens. she wants to share that freedom with others. i get it. i even appreciate it, but i have enough work on my plate right now, and this level of environmental detoxification will have to wait for another day.

i’m learning so much at this conference. in ways, it’s overwhelming, but mostly, it feels like a blessing. i came into this with enough knowledge to understand much of what i’ve heard. i’m grateful for that. sometimes after a session, i’ll run into my doctor and we’ll talk about what pieces of the lecture we should talk more about at my next appointment. i’m making a list of everything she and i need to discuss. i’m feeling like i actually understand what’s happening in my body while getting a clearer sense of what happened to it in the past. this is invaluable. i’m unraveling the great mystery of my history. with the moments of total panic or my ah ha! epiphanies, i couldn’t be happier that i made the brave choice to come.

          during the lunch break, i gazed around the crowded dining room looking for an empty table. i considered trying to sit with other people, to have conversations, to network as one is supposed to do in these situations, but i couldn’t bring myself to do it. just deciding not to disappear into a lecture hall with my plate was about all i could muster, so i sat down. within moments, the table had all but filled up. the woman to my left, a functional medicinal practitioner in florida and i struck up a conversation. when her friend came to the table, she introduced us and then turned to her friend and said, “she has lyme and some other tick-borne illnesses and she came here to learn more about the disease. great, right?” i then met a medical researcher and his lyme-affected wife. there was an awesome midwife who is an educator and an advocate of home births and a woman from australia who said that the government does not recognize lyme as a real disease and basically forbids doctors from treating it. she’s here in canada to try to recruit doctors to help lyme patients in australia. our table of 7 was actually pretty interesting and not at all intimidating. i even took the midwife’s card with the intentions of calling her while she’s in hyde park, ny doing a training with dr. richard horowitz (my three post winner, whom i’ve learned is not taking new patients. shi katta ga nai.).
            most of us had just come from a presentation on the effects of mold exposure and identifying environmental illnesses in patients with persistent tick-borne illnesses. i don’t know if everyone came away feeling terrified of their homes, but i did. according to dr. lisa lavine nagy, an expert on environmental illness, if you have mold in your home, you should sell the home, purge every single thing in the house, including your clothes, which she says cannot be cleaned in a manner that removes trichothecenes. trichothecenes are mycotoxins (a type of mold) and according to the CDC:
what?? she claims that you cannot wash them out of clothes and that, in fact, when you dry clothes that have trichothecenes, residual mold is left in the dryer that will contaminate anything else that is put in the dryer.
         as a new home owner who is battling a moldy basement, worsened by hurricane irene and the heavy storms over the summer, i was trying not to freak out. but i just spoke with lisa after the panel discussion and my panic was instant, palpable, and complete.
she smelled my jacket and said that it reeked of mold. she said that if it’s in my clothes, then it’s everywhere in the house and that there’s really no way to remediate the mold. we talked for about fifteen minutes about what to do. here’s what she said:
       1) cut a sample from the drywall of an effected area and send it off to p&k labs to find out exactly what   kinds of molds we’re dealing with.
       2) buy a new dehumidifier from santa fe.
       3) sell your house as fast as you can and stay in a hotel in the interim (or somewhere else that doesn’t have mold.).
        4) throw away all of your clothes (ohmygod. the house thing feels more likely that this! i’ve spent a         lifetime cultivating my wardrobe.).
        5) get fresh clothing and prewash it all.
        6) know that after i’m away from the mold, i will experience an increased sensitivity to chemicals in a process called “unmasking.”
        7) have urine samples sent out to test for toxicity levels. use a sauna before sending the second sample to help bring the toxins out.
        8) start an iv nutrient therapy for the first 2-6 weeks.
        9) manage the adrenal insufficiency.
okay, i can’t even put this entry together coherently because it was so, so alarming. there are so many more things that were discussed. i kind of wish that i didn’t attend this session. why? because so many of the symptoms of mold exposure that she described are things i experience, down to the fact that i don’t like to wear bras because the tightness around my ribcage often makes it hard to breathe. yep. that’s apparently a sign of toxicity. my partner has been complaining about the mold since his office is in the basement. my cat has developed a cough. the wet summer made this all worse and i’m in that place where i know just enough to know that this ain’t good.
         i have no idea what course of action i’ll take. it’s not feasible for us to move and i’m clearly not willing to part with my clothes yet. at this point, i’m just going to send in the mold test (which we were going to do anyway) and wait.
fffffffftttttttttt. i would like to go back under my rock now.
*i’ll link citations and websites to all of  this later. and is there still a smiley face where number 8 should be? i just tried to edit it- don’t know how it got there.

“you’re a celebrity.”

October 29, 2011

day two begins by rushing to the subway and even though i’m a new yorker new york transplant, well accustomed to this mode of transport, i can’t understand the elderly gentleman working the booth. i have to ask him to repeat himself about four times before i finally understand that i pick up my transfer on the other side of the metal gate. from there, there are only two train lines, nothing like the maze of trains in my stomping grounds.
           i arrive at the hotel over bundled and sweating, stripping layers off as i rush to a presentation on “the role of the mental health professional in tick-borne diseases.” in one of the smaller conference rooms. the room is virtually empty, which is ridiculous, really, considering the mental and psychological roller coaster i’ve been riding since being infected with lyme. this room, in this patient’s opinion, should be packed.
           at the front table, dr. charles ray jones is sitting, waiting for the lecture to start. after a bit of deliberation, i decide to approach him. i introduce myself and tell him how fantastic it was to hear his presentation on gestational lyme. i say something about how much i respect his work. he thanks me and then peers at my name tag, looking for my credentials.
          “oh,” i say, a little embarrassed. “i’m just a lyme patient.” suddenly, i wish i was something more at this conference. i’m not a connection to be made or a person of interest. i’m just a potential case study, a name to be turned to a number, written into a power-point presentation and talked about in terms of ailments, treatments and outcomes. i’m a living, breathing, well-dressed statistic.
           when i make my way back to my seat, the woman sitting next to dr. jones leans in and whispers, “you’re a celebrity.”

first days and fast facts.

October 28, 2011

          walking into the hotel this morning felt equal parts first day on your first professional job and first day of high school. there were people everywhere with the blue lanyards and name tags proving that they are ILADS attendees. some have ribbons on their name tags, indicating whether they are a speaker, a board member, a president or past president, etc. everyone’s name is followed by something like md or phd. mine says nothing beyond my name, save the city i live in. the woman who checked me in kept calling me “miss nakameyer.” this, for the record, is not my name. i wandered through the crowded room, filled with mostly white people (there were a handful of asians) chatting each other up. i took a seat in the concert hall and waited for dr. joeseph burrascano, a physician who has treated over 11,000 lyme patients, to give a presentation on borrelia.
           in the interim, a man admiring my macbook air struck up a conversation with me. we talked about our chronic lyme and swapped abbreviated stories of how life was before treatment. we talked about the brutality of taking mepron (atovaquone). he was nice, wanted to visit new york someday, and wanted to help raise awareness in canada about lyme disease. this encounter made me feel a little more at ease, though i still felt like a teenage outsider for most of the day.
          dr. burrascano started his lecture at the speed of lightning and, despite the fact that i was given a dvd with all of the power point presentations, i tried to keep pace. it felt a little like college, except for the whole laptop notes thing. burrascano is a quick-witted, humorous, fast talker and was comprehensive in the breadth of knowledge he shared. he’s one of the people whose work i’ve admired since wading into these tick-borne waters. sometime in the next few days, i’ll write up a separate post talking about what i learned from his lecture.
some fascinating tidbits that were substantiated during today’s sessions:
1) it is entirely possible that lyme can be transmitted sexually. there is evidence of the bacteria in sperm and there are cases of male partners becoming infected by their female lovers who have lyme. since the spirochete that causes lyme is so similar to syphillis, i find this theory to be entirely plausible. it was touched on really, really briefly in the documentary, under our skin. it didn’t get much more play than that today, except for the fact that it was mentioned by two different doctors.
2) one significant reason for the emergence of lyme in previously inactive regions, is the migration of birds. as they fly south, ticks infected with the bacteria that causes lyme drop to the ground, spreading lyme to areas where it was not present before. ditto for the migration back north.
3) symptoms + geography + lifestyle= the important factors in deciding on a lyme diagnosis for a patient. notice that positive serology (blood work) is NOT one of these deciding factors.
4) strep antibodies in children are linked to autoimmune disorders. this was mind blowing. i used to fake having strep (because i would get to stay home from school) and then go to the doctor and come back with a positive strep test. subsequently, a lot of the info i got today helped build the case that i very likely already had the autoimmune diseases before i was exposed to lyme. this also means that it’s very likely that even if i am able to clear my lyme and other tick-borne illnesses, i’ll still have my bevy of autoimmune crap.
            the two sessions i was most looking forward to happened today. one was with dr. richard horowitz, whom i mentioned wanting meet in my post yesterday. he talked about babesiosis, the malaria of the northeast. i will create a separate entry to highlight his presentation. the person i most wanted to hear from was dr. charles ray jones, a doctor who has treated over 10,000 children suffering from lyme and other tick-borne illnesses. he presented on gestational lyme, another entry i will tackle separately. but the highlight of the day was the “ask an expert” panel. the question i submitted was this:
how stable should a woman with chronic lyme and co-infections be in order to have the best chance at a successful and safe pregnancy?
the moderator announced that there would only be one more question answered and i watched hopefully as dr. jones paged through all of the attendee’s submissions. “here’s a good question,” he said and then proceeded to read mine! his response went something like this:
if the woman is appropriately treated with two antibiotics, the chance of a successful pregnancy and the baby being normal are pretty good. people who put off treatment year after year because they were never fully asymptomatic have done very well if continuing treatment [once they finally decided to get pregnant, in spite of not being in a remission.].
he also said that if a mother has babesiosis and they are pregnant they have to use mepron. oh mepron, i heard it time after time. i guess i’ll be keeping you in my life.
            so far, day one has left me feeling way more in the loop, but i’m also feeling a little sad about my prognosis. i didn’t hear anything today that made me think this battle was going to get any easier. from the sound of it all, my odds at a full recovery are close to zero. statistically, i already knew this. but today is no different from yesterday- i still think i can beat the odds. i believe that one way or another, i am going to get better.
            so… the gut wrencher of the day was when i ran into my lyme doctor and she informed me that she is leaving the clinic that she’s at. she’s going into private practice, which for someone like me with medicare, means that she’ll no longer be providing coverage for us government health care grubbers. sigh. she says there’s a well-respected doctor who is presenting at the conference on sunday. whether or not i’ll be able to get in to see him is a whole other story. i did have the good fortune to meet this doctor on my way out of the hotel and he confirmed that he does take my insurance and is also taking new patients. sometimes when you lose, a win is just around the corner.
**addendum** there were also ribbons that said "trouble maker," which i thought was brilliant.


October 27, 2011

i’m sitting next to a fire in my friend’s living room with three sleeping cats and a dog who looks exactly like the one i adopted 11 years ago. even though there’s still roses in bloom, it’s cold and overcast. i’ve had november rain stuck in my head since i got here, but i’m trying not to get ahead of myself. a few more days and that’ll be the right soundtrack for the moment. in any case, i’m here in toronto, not to prove how little i really know about canadian politics or the metric system (though that’s happening too), but to attend the 2011 ILADS conference (international lyme and associated diseases) that starts tomorrow morning at the fairmont royal york hotel.

i’ve been looking forward to this for a couple of months and now that it’s finally here, i’m experiencing a little apprehension about it. being in the dark for so long, gives the illusion that ignorance is somehow comfortable. once the lights come on, you can no longer deny that you know what’s in the room with you. the more i learn about my lyme and babesiosis, the more i realize how severe, significant and long-reaching it has been in my life. though the conference is designed to connect researchers of tick-born illnesses with medical practitioners, and i am neither, the opportunity to listen to world specialists and doctors from the front lines of the lyme battle is huge. i’ve had really high expectations about what i might learn this weekend. in the vastness of the interweb, it’s so hard to discern the good info from the bad, and i feel confident that the lectures i’ll attend will be some of the most reliable and current information available.

i’ve spent my life in doctor’s offices, hospitals and medical centers. i’ve logged countless hours researching my diseases. i’ve been forced to devote a massive section of my existence to my health and my treatments. i may not be a doctor, but i’ve certainly attained a high level of understanding for a layperson. i’m not worried that the presenters won’t deliver. i’m concerned about my own ability to perform. i need my body to hold up for a full three days. i need my mind to stay clear. i need to be able to focus, to take in as much as i can and really, above all, i need some new answers.

after my recent anti-malarial disaster, i’m concerned about starting it again and enduring this method of treatment for babesiosis (atovaquone and azithromycin). tomorrow, Dr. Richard Horowitz, a fellow buddhist and resident of new york’s hudson valley, will be presenting updates for diagnosing and treating babesia. my fingers are crossed that not only will i learn of alternate treatment options, but that i’ll be able to meet him and maybe get a foot in the door of his clinic. my ILADS doctor is great, but she’s only been trained in lyme for a few years and it’s her recommendation that i work both with her and with a more seasoned lyme doctor. getting in to see these clinicians can be difficult due to a high volume of patients (not to mention the prohibitive cost of seeing someone who doesn’t take insurance). sometimes being able to put a face with a case is what makes the difference between getting the appointment and not.

the next few days are packed with programming that i [think i] can’t wait to be a part of and i’ll do my best to give shape to my experience at this years ILADS conference.

anti-malarial malady.

October 14, 2011

i started this post three days ago, right after i began taking mepron (atovaquone), a liquid suspension prescribed in combination with azithromycin, an antibiotic, to treat my babesiosis, a tick-born disease i was diagnosed with shortly after my lyme diagnosis. i’ve had the costly medication ($1250) in my possession for a couple of months, but have put off taking it, though i’m not entirely certain why. i’m chalking it up to a residual fear of anti-malarials. as it turns out, the apprehension was completely warranted. i feel awful and it keeps getting worse.

the mepron began with a general malaise, not unlike the start of the flu and then moved into migraine territory. i’m severely sound and light sensitive with myalgia that’s so bad i kinda want to take a fistful of benadryl, sleep this off and crawl out of bed in a couple of days when the medication has worked its way out of my system. no matter how much water i drink, i’m perpetually dehydrated. my ears keep popping and my nose has started to run. my mouth tastes like corroded metal and i think i’ve had my shoulders shrugged for about 30 hours.

the majority of patients prescribed mepron are taking it for pneumonia associated with advanced hiv, and so determining which ailments were side effects of mepron and which ones were symptoms of hiv wasn’t as clear as it could have been. since i’m hiv negative and i was feeling pretty good when i started taking mepron, i feel like i know where the blame lies. what i don’t know is if i can keep taking it. while i realize that i almost definitely need to take this shitty medication, the next few weeks of living just can’t happen if i feel like this. plans i cannot cancel include going to the ILADS (international lyme and associated diseases society) conference in toronto at the end of this month. i’m well versed in the feeling-worse-before-you-get-better genre, but i dont’ know how to work this into my schedule. for so long, i didn’t make plans because i had too much trouble keeping them. since i’ve been feeling better, i actually booked some things far in advance. i’m wondering if that was a mistake, but i guess it’s too late to worry about that now!

my brain is powering down and it’s looking like i’m going to take an 11:30 am nap. one way or another, this too will pass and hopefully put me one big step closer to lasting wellness.