i’m in a presentation, by dr. amiram katz, neurologist and assistant professor of neurology at yale university, called “IVIg treatment for autoimmune issues in lyme disease: II. neurodegenerative and other neuro inflammatory conditions.” my attention span is powering down, largely because the cost of IVIg (intravenous immunoglobulin) treatment is so astronomical that many insurance companies will not cover its use. in the lyme world, it is typically administered under the care of a neurologist or neurosurgeon. this posting does not cover the myriad of potential uses for IVIg therapy. if you’re interested in reading more about how it’s being used through different medical channels, click here. what i’m writing here is pretty limited to what i’ve heard at this conference and have a very small knowledge base of IVIg therapies beyond that. this is the second or third lecture i’ve been to where IVIg is the heart of the research, but i’ve heard it mentioned in many of the presentations. tidbits from those other lectures will no doubt be included. please feel free to comment on it if you feel you have information relevant to neuro-lyme or neuro-inflammatory conditions.

so what is intravenous immunoglobulin? according to BDI Pharma, a pharmaceutical distributor who provides this blood byproduct, IVIg is:

a sterile solution of concentrated antibodies extracted from healthy donors which is administered into a vein. IVIG is used to treat disorders of the immune system or to boost immune response to serious illness, and to treat immuno-suppressed recipients of bone marrow transplants. Antibodies are responsible for defending our bodies from pathogens, such as viruses and bacteria.

according to dr. katz, it takes 50,000 donors to create a viable product. this is done through a very extensive process of refining and cleaning, washing the blood. he states that about 10% of 5,000 patients required IVIg therapies. it has been preliminarily successful in treating complications of lyme, but not lyme disease itself. it should not be used as a treatment for lyme and as such, lyme protocols should still be followed. in cases where the patient has severe neurological symptoms and has undergone typical treatment avenues with marginal or minimal success, this patient could be a good candidate for IVIg. interestingly, dr. katz believes that chronic lyme disease is actually an autoimmune disease, which is something that my lyme literate rheumatologist has also stated. the majority of long term damage is caused by autoimmunity and inflammation, a theme throughout this conference and the lyme world.

how exactly IVIg works in the body is still unclear, though it does seem to temporarily create necessary antibodies in patients who are unable to produce them on their own (immunodeficient). IVIg can also be beneficial for patients with autoimmune diseases, conditions where the body has an excess of antibodies and subsequently, they turn on the body and attack the patient. IVIg seems to regulate the immune system in most cases.

IVIg can be used to treat an incredible array for diseases and has been particularly effective in cases with patients who have MS. over a ten-year period, dr. katz used IVIg therapy for patients with ALS. only two of twenty patients who received this therapy and improved. there was still a fatal outcome, but their life-span was extended by a couple of years. dr. madeline cunningham, in another presentation at the ilads conference, relayed that in pediatric cases of PANDAS (pediatric autoimmune neuropsychiatric disorders), after one month, patients greatly improved with IVIg treatment. OCD and tics were greatly lessened, if even present, after 3-6 months of treatment.

in the case of late manifestations of lyme disease, autonomic neuropathy is common. according to the mayo clinic, autonomic neuropathy can be described as “a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.” until now, autonomic dysfunction was measured by unreliable, costly and tedious testing. dr. katz, by counting sweat gland nerve fiber density, has been able to more easily diagnose autonomic neuropathy. his research is demonstrating the ability of IVIg therapy to repair autonomic neuropathy, which “and this repair might sometimes antedate recovery of small fiber neuropathy.”

due to the cost prohibitive nature of IVIg therapies and the fact that, for many diseases and conditions, it’s still in the experimental stages, most patients will not be good candidates for this type of treatment. however, those who have exhausted traditional, as well as more aggressive therapies, and are still suffering from severe symptoms, might consider consulting with a neurologist who is familiar with IVIg. who knows? maybe your insurance will cover it!

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can we just skip my song and dance about why i haven’t written in almost two months and just talk about how ILADS is playing “long cool woman in a black dress?”

it’s day two of the ILADS (international lyme and associated disease society) conference and i’ve been consumed, typing frantically, scribbling notes, asking questions and actually talking to people this year. i missed last year’s conference due to that near-death bout with sepsis and the hurricane.

this morning i sat down at an empty table. within a few minutes, dr. daniel cameron, the new ilads president elect, sat down in the chair to my left. a few minutes later, the current president sat down to my right. then, dr. richard bransfield, who presented yesterday on “the psychoimmunology of tick borne diseases and its association with neuropsychiatric symptoms,” (my favorite session so far) joined us. suddenly, my empty table was the one in highest demand. i sat there, trying to politely gobble up cubed fruit, cut too big to fit gracefully in my mouth. i thought i could remain a fly on the wall until dr. cameron began talking to me. i found myself engaged in one of the more interesting conversations i’ve had at this conference.

part of why i’ve fallen off the internet is because i’ve been working on a much larger project, a way to reach a wider audience to bring attention to lyme disease and raise awareness. dr. cameron actually recognized me from a brief encounter i had with him at the ilads conference in toronto a couple of years ago. his practice is near me, in the hudson valley, and he offered to help me reach out to women of color whose lives have been dramatically and negatively impacted by these diseases. this is really exciting and i’ll tell you why.

i’ve been really trying to network this year, actually talk to people when i sit down for meals or have a break from the various sessions. it’s not the easiest hurdle for me. these tick borne diseases have left me with anxiety that knows no bounds. my social skills, once so finely honed, have fallen away and it takes significant effort for me to reach out to strangers face-to-face. but one of the really interesting things that i’m discovering, a theory i had that’s being proved anecdotally this weekend, is that there are few women of color in treatment. prior to this morning, out of everyone i’ve asked (and right now that’s about 15 different practitioners), only one doctor said she had a chronic lyme patient who fit my bill.

sad as it is, this makes sense, right? when we look at communities of color, we’re looking at a lot of intersectionalities. people of color (POC) statistically have less money, are uninsured or underinsured and are less likely to seek medical treatment. there’s also a lot of stereotypes associated with folks of color not having lyme (to be clear, i don’t believe that people of color don’t have lyme. i believe they are not being treated for lyme. this, in and of itself, is a subject that i really want to explore more). medical models work on the assumption that POC are less likely to be outdoors or live in areas that are considered endemic, thus making them less at risk for contracting and tick borne diseases. POC often seek emergency medical services and your average er doctor might have spent a couple of hours learning about lyme disease in med school. it’s highly unlikely that someone would be diagnosed with lyme or any co-infections in an emergency room. my experience, as someone who has state and federal health insurance, a myriad of autoimmune diseases and tick borne diseases (some of which are not recognized by the medical community at large), a long list of medications and supplements and is a woman of color, led to me being put in an observational ward, receiving no treatment for a severe case of sepsis. when my partner and i tried to make sense of how i was treated (or not treated, as the case was), we came up with a list of things that qualified me as a “throwaway patient.” i didn’t have a local doctor to fight for me and my rights. the emergency room staff saw me as poor, crazy and drug-seeking and those assumptions trumped the medical fact that my body was starting to shut down. in my opinion, my hospitalization and lack of treatment was not an aberration. it was the ways in which i am privileged that saved me (this includes knowing one of the hospital’s major benefactors). without those privileges, this is a truly unfortunate and common experience for POC.

i could really go on about this for pages, so i’ll leave this here for now.

overheard at breakfast was that the cdc may have just increased their number of lyme cases from about 30,000 people to 300,000 people because a vaccine is likely to be released in the next few months. this is exciting news on the vaccination front, but, of course, pretty underhanded of the cdc. once again, they play to the tune of big pharma instead of looking at the staggering number of people suffering from lyme and co-infections.

this year, i’m going to a lot of presentations that are more specific, strange little wormholes of information and research. in the past, i focused more on general overviews and mainstream treatments (i’m actually including integrative approaches in this categorization, at least in the ilads community). two female lawyers, one from the west coast and the other from the east, who are experts on lyme and disability gave fantastic presentations accompanied by a very thorough question and answer session. i’ll definitely write about that, as i know so many of you are fighting to keep your head above water and the battle with insurance companies and the social security administration is an energy drain that so many of us find nearly impossible to navigate.

i hope that over the coming days and weeks, i’ll find it in me to write about some more of the wonderful things i’m learning here. i’m trying to make a comeback on here. but right now, i should probably check my brain back in to the conference.

 

last october, i made the decision to attend the ILADS conference in toronto. the registration form made it pretty clear that the conference was geared towards ilads members, doctors, medical practitioners, researchers and other professionals who were working in one form or another with lyme disease. the conference fees were arranged in such a way that i ended up paying as a “non-member, non-physician,” which is the most expensive way to go. in no way did i feel like there was an unspoken deterrent for patients to attend, i was just not the target attendee. i decided to go anyway.

scouring the web for information on lyme disease and co-infections, i was having abundant troubles finding sources that i felt certain were credible. i questioned the validity of most of the articles and research papers i read. there were a few doctors whose work i felt fairly confident in, but i floundered with the majority of readily available information. at this point in my diagnosis, i devoted most of my time to learning about lyme disease with the hope that the more i learned, the more equipped i would be to create an effective strategy to beat lyme and babesiosis. at the time, i didn’t know enough of bartonella symptoms to be able to recognize that i was also infected with that. but no matter how much information i tried to take in, i felt like i didn’t know enough. i felt like i was battling an invisible opponent and i obviously didn’t have the upper hand.

i went to the ilads conference feeling confident that i was going to be able to extract at least some concrete evidence that would help me get better. the presenters and speakers were names i had come to recognize from my research. i studied the conference schedule, trying to figure out how i was going to make it to all of the lectures that i was interested in. there was really no way to do that, with multiple presentations slotted for every hour of the weekend. so i starred the ones i knew i shouldn’t miss and made an optimistic calendar of all of the lectures i wanted to attend. i felt a bit nervous about going. i was worried that my brain would be in a lyme fog and i wouldn’t be able to absorb any information. i had concerns about sitting still for two-and-a-half days. fortuitously, the dates of the conference corresponded with the general time that i had planned on visiting a good friend in toronto. even if i was too sick to really be present at the ilads conference, i still had a great reason to be in canada.

i have to say that going to the ilads conference made an immeasurable impact on my health. in all my years of enduring illnesses, this was the most empowering thing i had ever done to really take control of the direction of my health care. though i knew that no one else was going to effectively manage my autoimmune and tick-borne diseases, i had just thrown myself to the wolves and hoped for the best. i had a good llmd (lyme literate medical doctor) but i also owed that to the person at ilads who put me in contact with her. my lyme doctor was also in attendance, which was great because i was able to check-in with her periodically. she helped me to filter through the stack of new information we were both gathering.

i wasn’t able to interact with other conference attendees on a meaningful level. i just didn’t have the energy to use any of my social skills. the best i could do was sit with my laptop and take the most detailed notes i could manage. i was typing frantically most of the time, only to realize later that the majority of what i wrote down was actually in the disc of powerpoint presentations provided with all of the other conference materials. i have a mac air and didn’t have my disc drive with me… but it was really useful for me to listen as closely as i did and to create my own notes on this incredible research that was all new to me. there were so many small moments, clinical evidence presented as side notes, that transformed my understanding of how these diseases really affected my body and my mind. i made connections between my current symptoms and my history of unexplained medical problems. for the first time in a long, long time, i didn’t feel like i was crazy or alone in what i was going through. there was medical proof that my experiences were real. at that time, i needed that more than anything.

at the end of each set of presentations, there was a question and answer session. i used every single one of these opportunities to ask questions that i had put in my notes. when the moderator chose which slips of paper to ask the panel, my questions were always selected. i felt that the fact that my inquiries were chosen demonstrated that the concerns of a patient, an infected layperson, were often somewhere in the margins, left out of the primary discourse. i was asking for different answers than a clinician would be and i was also asking for different reasons. what i sought was, what i think most of us suffering from these diseases want to know, how can we apply these treatments in a realistic, practical and effective way? what methods can we employ that are going to help us get well?

not only did i leave the conference feeling like i had a much better handle on what was going on in my body, i finally felt like i had agency and the ability to navigate my healthcare. this alone was priceless, but i also was blessed to be able to connect with my current lyme doctor. the work that he is doing, in my opinion, is revolutionary. he’s a visionary and he is developing treatment methods that actually work.

i’m registered to attend this year’s ILADS conference (november 2-4) in boston. attendance for a non-member, non-physician is $520, if you register before october 10th. like everything, the cost is prohibitive for a lot of people, but if you have the means to attend and you’ve never been before, i can’t stress enough how powerful this was on my path to wellness. being well-informed is the greatest tool we can use to fight these diseases and the ilads conference is an amazing way to access reliable information, especially in just 2.5 days. if you’re not able to go in person, you can see videos of some of the presentations. it might not be the same as being there in the real, but the information is the same.

hopefully, i’ll see some of you there. i’ll be the freckled little, dark-haired girl typing like a maniac somewhere in the back of the room.

          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.