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.