Transcript of Verbal Comments
During the December 11 and 12, 2018, Working Group meetings, 20 individuals provided public comment. The transcript of their comments is provided below. It has not been reviewed by the commenters to correct any errors.
Nicole Malachowski
Good afternoon, and thank you for the privilege to provide comment. My name is Nicole Malachowski, I'm an active duty colonel in the United States Air Force. I am here in my personal capacity, as a patient advocate, my comments are not intended to represent the Department of the Defense, or the air force.
I've served over 21 years as an officer, and a career fighter-pilot. In 18 days, I will be permanently, medically, retired from the career I love. I was found unfit for duty, due to the damage, and ongoing effects, of neurological tick-borne illness. My illness began in 2012 when, as the commander of an F-15E Fighter Squadron, I began experiencing rapid onset of multi-systemic symptoms. Repeated doctor visits yield no answers, no diagnosis, no treatment, nothing. Just over a year ago, I suffered from intractable pain, insurmountable fatigue, cognitive disfunction, and major problems with my speech, and short-term memory. I endured disorientation, confusion, anxiety, and even moments of temporary paralysis. I was unsafe to be left alone, I could not play with my children, care for myself, or interact with my husband, who had to be both caregiver, and single parent, during the worst of my illness. There were times I would have welcomed death. I thought I was tough, as a combat-proven fighter pilot. But, tick-borne illness destroyed me, brought me to my knees, and ruthlessly broke me.
It would be 1,525 days between my first doctors visit, and my accurate diagnosis. Often, I was told I was just suffering from stress. I felt patronized, discounted, and dismissed. I saw over 20 doctors, military and civilian alike, across eight specialties, and received three misdiagnoses. By sheer luck, I was finally able to be seen at the Dean Center for Tick Borne Illness in Boston, Massachusetts. They are the only reason I am here today, the reason I am able to, once again, stand, read, and speak.
Since my diagnosis, I have reviewed my own medical record many times, and I'm profoundly troubled that other service members, military family members, and veterans, may be enduring similar, unnecessary suffering. I am deeply concerned about the impact of these tick-borne diseases on our military. We are a high-risk population for encountering countless diseases, and I would like to add special emphasis on Borrelia, and Bartonella. The tax payers of America invested tens of millions of dollars in my training. They are not getting the return on investment they should have. This is a health of the force issue, this is a military readiness issue, and this is a national security issue.
My doctors, civilian and military alike, were woefully uneducated about the breadth of tick-borne diseases, and how they present. The accuracy of diagnostic tests are abysmal, treatment options are inadequate. The entire life-cycle for a tick-borne disease patient is appalling, from prevention, to diagnosis, to treatment, to recovery. I will have spent over 21 years serving my country. Every day, I was measured and held accountable to the highest, strictest, standards of professionalism. That's as it should be.
The Departments of Defense and Veterans Affairs need to answer to the same level of accountability in their care of service members, veterans, and military families, with regard to tick-borne disease. I firmly believe they are uniquely suited to take an impactful leadership role in this area. Let's empower and resource them to do so, let's them lock their full potential. Now would be a great time to drastically increase funding to the congressionally directed medical research program for tick-borne disease. This working group has the opportunity to harness the rapidly evolving science in a way that joins forces with clinicians, and patients. You have my full support, and encouragement. Thank you.
Olivia Goodreau
Hello. My name is Oliva Goodreau, and I am 13 years old, and am from Denver, Colorado, and I have Lyme disease. I have had Lyme disease, for half of my life, and I do not remember what it feels like not to be sick. The summer in-between my first, and second grade year, when I was seven, I was bitten by a tick in Missouri, on vacation. We did not see the tick, and I did not have a bullseye rash. When my second-grade year began, I started having body aches, brain fog, headaches, tremor in my right hand, I couldn't hold up my head, my legs would go numb, or burn. I had balance problems, light and sound sensitivities, and I started blacking out. My body felt like wood, and it was very hard to get out of bed.
My parents took me to over 50 doctors. I had MRI's, CAT scans, Spinal Taps, EKG's, liver biopsy, under and lower endoscopy. I had my adenoids removed, and over 100 blood draws. I spent a week in the hospital, and was in and out of the E.R. I was told I needed to drink more water, then I was misdiagnosed with Wilson's Disease, and told that I would not live past the age of 40. Then, when the DNA test came back, saying that I did not have Wilson's Disease, I was asked if maybe I was making this up.
January 29th, 2013, my 51st doctor finally diagnosed me with Lyme Disease. This doctor put me on 30 days of antibiotics, and said that I would be back to normal. By the fifth day of being on the antibiotics, my parents said that they had seen the twinkle in my eye that had been missing for 18 months. I felt much better, and my third-grade teacher called my mom, and said, "I just met Olivia for the first time, and she is really funny." And, they both started to cry.
Unfortunately, after my 30 days of antibiotics were over, all of my symptoms had come back. My parents knew that they needed to find a Lyme specialist. For three years, I bounced around to different Lyme doctors in Colorado, but I was not getting better. My 54th doctor, is Doctor Richard Horowitz, with his M6 model, not only do I have Lyme Disease, but he diagnosed me with Bartonella, Barbisio, relapse in fever, POTS Syndrome, low immune globin's, and anti-one trip zone deficiency in my liver. This is all from one tick bite that I never saw, and never had a rash, and 53 doctors missed everything. What second grader would make up a tremor in her hand, blacking out, and not being able to hold up her own head? While my friends were on spring break, I had a liver biopsy, spinal tap, and hundreds of tests that I did not need.
I read a story about a single mom with an eight-year-old son, who had Lyme Disease, and how the mom gave up their apartment, and was living in their car, so her son could get his Lyme Disease medication. After reading that story, I knew I had to do something to help these kids with Lyme Disease. So, on January 18th, 2017, I launched the LivLyme Foundation. I have raised $288,000 for kids that cannot afford their Lyme medication, and for scientists, and their research, for better tests, better treatment, and to find a cure for everyone that is suffering from Lyme disease. Since January 18th, we have had 41 families, from 22 different states, apply for grants. The children are ages four to 20, with four families having three, or more, kids with Lyme Disease.
This Saturday, I will be announcing the 10 families that will be receiving a grant from the LiveLyme Foundation. This has been really hard, because I wish I could help all of these families and their kids. I have already given $75,000 in research grants to Dr. Sapi, at New Haven, Dr. Zhang, at Johns Hopkins, and Dr. Rajad is at Stanford. My next grant will be going to Dr. Lewis at Northeastern. Having met, and toured, all of these scientists' Lyme Labs, which I learned how hard they, and their team, are working for the Lyme community. These scientists give me hope that we will have better treatment, and a cure, in the future.
So, I am here today to represent all of the children that are told that they are making it up. I am here to represent all of the people that are sick with Lyme Disease, and that cannot help themselves. I am here to represent all of the people that have lost their savings to help their loved ones with Lyme Disease. And, I am here because if a 13-year-old girl from Denver, Colorado can make a small difference in the Lyme world, think of what this panel of experts can do. Thank you for your time.
Amy Fitzgerald
Thank you for allowing me to speak. My name is Amy Fitzgerald, and I've been living with Lyme Disease for 22 years. I was undiagnosed for the first 15 years of my life, when --first 15 years, and was told I had Ankylosing Spondylitis, and then Fibromyalgia, even though I didn't meet the criteria for either diagnosis. I cannot recall if I was tested during this time for Lyme Disease.
My story is that I woke up one morning as a 24 year old, and could not get out of bed. My legs were paralyzed. I was in a wheelchair briefly, and then I moved on to crutches for mobility. I could not weight bear on my legs. I had pain in my joints, my back, my hips, I couldn't move my neck, my eye flared up, and I was diagnosed with Iritis. I had to sit in my bed, in the dark, as I was sensitive to light. I couldn't drive, I couldn't go to work, and I was 24 years old. I suffered from chronic fatigue. I lived this way for 15 years, going to doctor, to doctor, to doctor. At one point, I thought I was dying. Many times, I was told the pain was in my head, and I was told I would never run again.
When I was 39, on Thanksgiving Day, I was tired of being sick, and tired. I decided to try and run, and it was a very slow start, run-walk. But, I pushed myself for five miles, with my husband by my side. I continued to run, walk, and train for my very first long-distance race, a 10-miler. I had never felt better as the weeks passed. Remember, the doctor's told me I would never run again. They told me to rest. The pain slowly started to disappear, and I put away my crutches, although they still sit in my room, but I haven't used them for quite a while.
When less than a year had passed, and I developed pain in my wrist, and elbows, and I was so tired. I went to an infectious disease doctor, who tested me for Lyme Disease. My tests show I had a past infection, and currently have positive antibodies showing current infection of Lyme Disease. I was perplexed, because I had never been treated for Lyme Disease, and I didn't remember being bit by a tick, or having a bullseyes rash, currently, or in the past. It took two months of antibiotics to heal my body, of my Lyme Disease symptoms. I ran my first marathon, the Marine Corps Marathon, and shortly after finishing my antibiotic treatment. It is still my personal best marathon time, after running over 20 marathons, and ultra-marathons, including the Umstead 100-miler, who I raise funds for, for Nat Cap Lyme.
Two years later, I developed debilitating pain in my ankle bone. I researched different causes, and one thing that stood out in my research, was the pain could be caused by Lyme. But, I was healed from Lyme, I took those two months of antibiotics. I requested my doctor test me for Lyme, and my antibiotic blood test came back with the same exact results as it was two years prior. She called, and told me I have chronic Lyme Disease, which is kind of unheard of in the medical world. I was prescribed two months of antibiotic treatment.
This is when I dove into my research, and put the puzzle pieces together, and made the realization that I've been living with Lyme Disease since that terrible morning I woke up, and I wasn't able to walk. My life forever changed, as I knew it. And, today I still live with chronic Lyme, and recently had a relapse this summer. I want to introduce my daughter, Kaitlyn Fitzgerald, so, she'll talk about the pediatric side. Thank you.
Caitlyn Fitzgerald
Hello everybody, I'm Caitlyn Fitzgerald, and I'm 14 years old. My Lyme story is, I've been experiencing symptoms for as long as I can remember. Which include joint pains, muscle spasms, and headaches. But, there are also a lot more that I didn't realize weren't normal, because I thought they were, you know, not out of the ordinary. So, as you saw before, my mom has had Lyme Disease for a very long time, and since I've been experiencing these symptoms for a very long time, I've -- she's wondered if she had passed it on, through utero.
So, when we went to the doctor, my mom would always mention my headaches. They told me I was dehydrated, and I needed to drink more water. But, I've [laughs] been drinking lots of water, and bringing water bottles with me to school every day, so that was a little weird. And, the doctors always called these pains that I had 'growing pains', and I would just stop getting them eventually. But, here's the thing: I actually still have them, and they're much worse than they were before.
One morning, when I was around seven, I woke up, and I couldn't put any weight on my left leg. My knee was basically paralyzed, and my mom took me to the Urgent Care center, and they ran a bunch of tests, and they concluded nothing was wrong with me, which was concerning. The next morning, I woke up, and I was fine, but one of the tests they didn't run was the Lyme test. And, after my mom found out she had Lyme, she did a lot of research, and she got my siblings and I tested, since we like to play outside a lot when we were younger. And, I came back positive for Lyme, and my mom asked the pediatrician for me to have a month of antibiotics. After I got my antibiotics, I felt great, I didn't really have any symptoms. But, after a couple months, they came back, along with a lot more, including nerve sensations, my muscles are wonky [laughs], anxiety, and sight hallucinations, and many more.
When I first told people I had Lyme Disease, I actually didn't really know what it was, and neither did my friends. One of my friends actually said, "Isn't that the disease that just makes you really tired?" And, I thought that was an interesting point to bring up.
So, actually, this summer my mom brought me back to the pediatrician -- it was a different doctor this time. And, we told her what was going on, and how my symptoms have gotten worse since I got treated. And, she said she wasn't allowed to treat me, or give me anything, because she didn't want to get in trouble, and she didn't want to do anything she shouldn't do. Which, is understandable, but the problem is, I'm still sick, I still have symptoms, and it seems that there's nothing they can do about it for me, which, also, is concerning because I can't exactly get better. And, I have pains every day, I have brain fog, it's hard to focus in class, and there's not much I can do about it. And I know there's a lot of other people out there like me, who are experiencing the same thing, and there's nothing they can really do about it either.
So, I'm really excited that I was offered the opportunity to come here today, I found this an amazing experience, to come and listen to what you guys have to say. Thank you.
Jill Auerbach
Hello, and thank you. We need gold standards serology for all tick-borne diseases, two, we need cures to suffering. Three, tick research to stop ticks, and disease. Funding -- fourth, funding commensurate with tick-borne diseases. The last two, we need to accomplish.
All of us -- all of us have a dire need to include tick research as a critical part of the solution being derived by this work group. Yet, no tick scientist was included. The ability for the HHS Secretary to include that is stated in section 26-G2. Quote, "Other individuals whose expertise is determined by the secretary to be financial to the functioning of the working group" end quote.
What we have, is a huge environmental -- tick problem, which was first noticed in the Connecticut area. It has been allowed to spread, unabated, for 44 years, because of the lack of government funding, and attention. Lyme is now in about 50% of the counties in the United States, that's not including the other tick pathogens, and tick species. All have increased, and spread like wildfire. The societal cost of Lyme Disease alone, is about $3 billion, while NIH funding is only about $24 million, and CDC about $10 million a year. Does this make any sense?
Ticks and mosquito vectors infect us with voracious pathogens. In the U.S., tick-borne disease outnumbers mosquito disease by about 80-to-1. But, funding is in the reverse. Until the tick population is reduced, and the tick ability is blocked from being able to transmit pathogens, the scourge of Lyme, and other tick-borne diseases, will continue to march across the USA, infecting, re-infecting, and co-infecting us, our children, our pets, and the critters that spread them. We must protect our future generations; these children should not be getting sick.
The problem has grown way beyond just one disease, and other fatal, hemorrhagic, encephalopathic tick-borne diseases are certain to reach our shores. A patch for Lyme disease is not a solution for the environment. Tick research scientists hold the most potential to bring about fruitful solutions. About 40 prestigious scientists join Tick Research to Eliminate Disease scientist coalition, TRED, in support of what I said. That should be enough to convince everyone of the critical importance of this long-neglected field.
Just one example, transgenic mosquito research is making great strides. I ask, why hasn't there been any transgenic research on ticks started? I urge the secretary to add tick scientists to this work group, and challenge you to include this as critical part of your discussions. The time is now.
I add two quick items. Disturbing, is that missing Stephen Wikel, tick researcher, and basic scientists, such as Monica Embers. You must --also, you must discuss a stop-gap measure, which could be Nucatone. Food great to humans, kills mosquitos, and ticks, but not honey bees. CDC testing demonstrated that a soap wash caused infected ticks to drop off of mice, killing 85 percent of them, no mice were infected. Since most tick-borne pathogens transmit in over 12 hours, a simple nightly shower, or bath, could prevent many diseases. Simple, safe, inexpensive. Better than tick checks. By the way, it's being funded by the CDC for mosquitos. Thank you, very much, for your attention.
Erica Keys-Land
Hello, thank you so much for the opportunity to address you this afternoon. I've also submitted written comments for the record, but I'd like to use this opportunity today, to share with you my personal story, as well as my suggestions for the mission of the working group.
Having worked for 13 years as an attorney at the Department of Health and Human Services, Office of Chief Counsel for the Food and Drug Administration, I wrote, and reviewed, drug regulations, and also prosecuted those who failed to follow them.
However, I'm here today as a Lyme Warrior, as I've been battling Lyme Disease myself, for six years. I never saw the classic bullseye rash, and I never had a positive Western blot test. My symptoms started with joint pain, and brain fog, which got progressively more debilitating as I, like so many other Lyme Warriors, went searching from doctor to doctor, and found no answers. Finally, I tested positive for Lyme through a clinical diagnosis, from my wonderful infectious disease specialist, Dr. Joseph Jemsek. Two of my children have Lyme disease. My son had a bullseye rash, which was misdiagnosed as ringworm. He contracted Lyme, by the way, while living in New York City.
We all know, regrettably, that the new data shows that Lyme Disease is an unreported illness, and at least six times more common than HIV and AIDS. Thus, I think there should be an HIV, and AIDS style Manhattan Project to combat this serious pandemic. My suggestions for your working group are one, revoke the archaic, and ineffective IDSA Lyme Guidelines, and establish new ones. Next, establish a new standard for Lyme Disease testing. Third, review the evidence for the existence of chronic Lyme Disease. Come up with a new name, if you must, but most importantly, publicly acknowledge that the scientific evidence proves that Lyme Disease does, in fact, persist.
Make a public health announcement, so that those of us that are affected do not have to fight this silent battle with our team of scientific-based doctors, and with insurance companies. Once you publicly acknowledge the chronicity of Lyme Disease, then internists, rheumatologists, all doctors around the world, will stop looking at us like we're crazy. Furthermore, you might even save the lives of so many people who indeed have Lyme, but might be misdiagnosed with ALS, and M.S., Fibromyalgia, chronic fatigue, and so many other diseases that are overlooked.
Fourth, conduct further trials of antibiotic therapy, or other alternative forms of treatment, such as stem cell therapy, and also encourage pharmaceutical, and other alternative medical industry participation, using the best of both eastern, and western, medicine. Fifth, stop putting forth efforts, and scarce resources, into the failed Lyme vaccine concepts, because there's been more than one.
Thank you so much for the opportunity to speak today. If you need any more Lyme patients, I'm here, would love to help out. One more thing, Dr. Jemsek, who's here today, if there's any way you could get him up on the mic to say a few words today, I would --I'm sure he'd be a benefit to this process. Thank you so much.
Kristina Bauer
Good afternoon. Thank you all for having us here today, and coming yourselves. My name is Kristina Bauer, I am a physician facilitator for the North Texas Lyme group, owner of Yoga Center G-spine Wellness Center for 12 years, and mother of four, ages eight through 14.
I caught Lyme Disease 35 years ago in Illinois from several tick bites, playing in the woods by my house. I've seen countless doctors, and had many different, inaccurate diagnoses. I treated GI Lyme, misdiagnosed as Chromes Disease ineffectively for 26 years, following ulcers, and, as well, an obstruction. Could have killed me. Gastroenterologists would recommend immuno-suppressants as my only line of treatment, many times. This type of uneducated recommendation by the GI community could cause the Lyme to take over my immune system. In contrast, I started an antimicrobial, and immune building stomach protocol five months ago, resulting in no more ulcers, pain, or inflammation.
I passed Lyme to all four of my kids, our children, during gestation unnecessarily, as research shows. The government knew Gestational Lyme existed back in 1985. I have the studies today, to talk about after this meeting, if you're interested in those. Some of my children, and I, have been bedridden in severe pain, had seizures -- my son on his seventh birthday, which we had to cancel his seventh birthday party because of that, lost the use of our body, and brain. One child was in four different schools by the second grade, due to undiagnosed illness causing severe learning difference. After treatment, he gets straight A's, and mom's so proud, and he has rebuilt his self-confidence. We have spent over $100,000 on extended antibiotics, and other validated therapies, and successfully cleared four, of five, of us of viruses, Lyme and co-infections, but only for now, as it is lying dormant forever, once you get it.
$52 million over 17 years of government grants studying infections have yielded no tangible benefits to Lyme patients. Therefore, I propose to you today, several things. Number one, anyone who denies persistent Lyme be banned from participating in the tick-borne disease working group.
Non-pharmaceutical therapies is number two, that are peer-reviewed and validated, need to be covered by insurance companies, so everyone has access to treatment that works. Number three, encourage the millions of cancer clinics across the United States, and the world, to integrate Lyme treatment that could provide an immediate ability to treat severely desperate Lyme sufferers, since Lyme affects the B cells, similarly to cancer. Number four, patients who have been bankrupted, and disabled by this disease require government sponsored medical care, to regain the capacity of productive -- being productive members of society. In July, after treating for five years, I've had a poor, and a pick line. I went to Germany, and received 10 million of my own blood cells -- stem cells, and have seen healthier days then since I was a child.
Number five, I look forward to the U.S. offering the use of auxologist blood stem cells to repair the damage from Lyme and Co-infections someday. Number six, and lastly, demand that doctors use the most current, and AMA approved, CME training online, written by Dr. Maloney, and are free on many websites, including txlda.org website. I'm hearing today we are forward thinking, so I'm asking to you, please update the link on CDC's website to NIH, which still hosts IDSA treatment guidelines with current science, not old science. We demand, and deserve better. Thank you for listening today.
Tim Lynagh
Yeah, I think I'm, kind of, a --well, I feel like I'm in an awkward position, following all those heart-wrenching patient stories. And they were, I mean, I was close to tears, over there, at one time, myself. My name's Tim Lynagh, and I started working on Lyme when I was on -- working on Capitol Hill. And, then, when I left the Hill, I started to volunteer with the Lyme Disease Association. And, I'm not going to do a broad brush, or a broad take, on issues, but to address some specific issues related to surveillance.
Surveillance of both human disease, and tick vectors, is important, because it provides us an idea of risk, in terms of prevalence of exposure, and provides data necessary to estimate disease burden including both morbidity, and mortality, and financial cost to individuals, and society. Surveillance issues also have a major impact on the individual's ability to receive diagnosis, and treatment.
Now, as Gregg Skall had mentioned, significant attention should be paid to the Lyme Disease case definitions developed by CDC in collaboration with the Council of State and Territorial Epidemiologists. Case definitions constitute surveillance criteria, not diagnostic criteria. A history of surveillance case definitions for Lyme Disease since 1995 show them getting significantly more stringent. But, up until the 2017 iteration, they all contained the statement, "This surveillance case definition was developed for national reporting of Lyme Disease. It is not intended to be used in clinical diagnoses."
Even before that language was dropped from the case definition, patients across the U.S. were refused diagnosis, and treatment by physicians who told them, "You do not meet CDC criteria." And, physicians who did treat were often subject to discipline. This is particularly relevant to those in the south, and Midwest, who have consistently been told they have little, or no, Lyme, in what are now called Low Incident States, a 2017 surveillance term.
The definition of high incidents, and its application in the case definition, make it almost impossible for any state that is not now classified as high incidence to become so designated. Tens of thousands of people over time had to travel across the country to high incident states, to receive care. Many have progressed to chronic disease, and been severely debilitated, when early diagnosis and treatment had been denied, based on surveillance criteria. And, now, the MMWR has even stopped reporting case numbers weekly, although Lyme has one of the highest reported case numbers in the MMWR. Only an annual total is now reported.
Access to care is dependent upon accurate surveillance, as is funding, since diseases with high numbers, and high disease burden are considered more deserving of funding. The $40-$45 million spent by the federal government, including CDC, NIH, and DOD's CDMRP, is inadequate to address Lyme, which can be demonstrated to be close to 400,000 new cases in 2015, based on 90 percent underreporting.
We also need to develop a more systematic, and comprehensive, plan for surveillance of human TBD's other than Lyme, and co-infections. As well as a comprehensive vector surveillance strategy. In a 2017 article, tick-borne zoonoses within the U.S. persistent with emerging threats to human health, Ben Beard, Christopher Paddock et al, described 12 major TBD caused by 15 distinct disease agents, by the 8 most common human biting exuding ticks in the U.S.
Gill Lake
Thank you. I just wanted to point out that this panel here is dedicated to cognitive dissonance eradication, are we in agreement? You had a really good display up there, with the hands on the bible, but that is not a constitutional thing, you could have just as well had a constitution to put your hands on, it's all I'm going to say, thank you.
Meghan Delaney
So, I wasn't sure if I was going to make it here today, so I don't have anything prepared. This is really important to me, I'm here as a private citizen, but I've worked for the Department of Defense my entire career in the healthcare field. I'm not a clinician.
My story starts off a bit like a "House" episode. At 29 years old, I got off of a rollercoaster in San Antonio, Texas, and had what looked to be a heart attack. And, that didn't really make much sense to most people. I worked around a lot of physicians who knew me, and knew my work ethic, and knew who I was, and saw me deteriorate over the next few years, and scratched their heads. They all believed something was very wrong, but no one was quite sure what it was. And, because it manifested initially with me as cardiac symptoms, I was pushed through the system, I was seen all over the place, I was at Hopkins. It eventually moved into my nervous system.
Again, none of us knew exactly what was going on at the time, I lost the ability to walk, they started to think I had M.S. I was seeing rheumatology, neurology, cardiology. I ended up out at Cleveland Clinic four and a half years later, after now being on disability for six months. Didn't really get too far there, and, then, I ended up getting pulled out of my car on 66 unresponsive with another stroke, and as I was in the emergency room at Fairfax hospital, the doctor recognized me from my work with DOD, and international health, and asked me what DOD was doing for Ebola. As I was laying there [laughs], unable to move one side of my body, and unable to talk.
So, there's some irony here. I knew at that point, after four and a half years of this, and the complete deterioration, that I was going to possibly end up dead. I was, thankfully, able to see a Lyme specialist, who got me the right testing eventually. I want to make it clear that through the journey, there were doctors who truly believed something was very wrong, and they were more than willing to go through the process --the lengthy process of submitting me for NIH rare disease programs.
But, before this all started, I had a bite on my leg, and I showed it to the doctors that I worked with, who are my colleagues. And, no one ever put two and two together. So, unfortunately, this has greatly impacted my life, and my family's life, I had to drop out of grad school, my career goals have completely changed. I'm here today --I'm really happy to see what's happening. I'm a little concerned, and I'm hoping that this working group can help with the fact that I work with scientists, I work with clinicians, I know what they need to see, I know what they want to see, and I know they saw me happening, but I didn't fit their textbook, in what they learned in med school 30 years ago. And, I didn't fit the diagnostic criteria, and the blood work that showed up as results. But, they still believed something was very wrong. I'm hoping this working group can help highlight the fact to conventional medicine, and mainstream medicine, that this issue not case closed. We might not have all the answers, but don't write people off, and never look at this issue again.
The amount of money that has been spent on me through the medical system, and what I've spent, you know, a lot of this probably could have been addressed initially, and I never would have gotten to the place I'm in. So, thank you for being here, thank you for your time, and I really look forward to the progress of the working group.
Gil Lake
Hi, my name is Gil Lake. Thank you for your attention. I am not truthcures.org, but I gain great knowledge from that organization concerning Lyme disease.
Respectfully, I have crawled 3,389 kilometers on Wounded Knee, and no spleen to lie to you today. A long, long time ago my great Uncle Sam had a saying, and it goes as thus: we the people of the United States, in order to from a more perfect union, establish justice, ensure domestic tranquility, provide for the common defense, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.
Please consider the exit, ye who wrote in on the proscription of the Dearborn Conference, amongst you, if any. Misfeasance, malfeasance, and non-feasance are casus belli in any other scope, a cause for war to promote this for decades, and not actually do anything about it.
The Osp A disorder, for example -- and expressed in a pandemic form, however you do that, but it's all over; it's not just in western Michigan where I got the tick, I had to move completely out of my territory into the desert just to survive. I didn't have a doctor. I still don't have a doctor. It's not available to a very large portion of our society. I don't know if you guys are aware of that.
You all have doctors, you all have lawyers, and collectively you have a lawyer. I don't know why there isn't one on the panel. I don't know why there isn't a psychiatrist on the panel to differentiate some of this cognitive dissonance that is promoted through the CDC, et cetera. All these corporations have got their own agenda. And it's not the same as mine. I just want to survive to tomorrow. And I want to --and I've had neighbor, neighbor, neighbor, die from this affliction. And it doesn't seem to rattle any cages back home.
They aren't --when I was a truck driver, as a CDL driver of hazardous materials the very first thing we had to do if there was a problem is -- not even if there was a problem, is to notify the public. You placard the vehicle.
Placard; give everyone attention to this very, very important matter. Thank you.
Jenna Luche Thayer
Hi, my name is Jenna Luche Thayer. And I have worked globally for 32 years on the rights of the marginalized, and held senior advisory positions for the U.S. Government in the United Nations, and I'm the founder and director of the Ad-Hoc Committee for the Health Equity in the ICD-11 Borreliosis codes, and the global network on Institutional Discrimination. And my expertise includes human rights and transparency and accountability of governance.
So, according to one of many odd articles that has been sponsored by 32 million dollars in NIH grants, translational research grants, I'm also "nefarious," and "dangerous," and I'm being sponsored by unknown and powerful sources. So, I just want you to know that my husband has invited everyone to our house for a barbecue, so you can know who he is.
Anyway, to day, I'd like to talk about some observations and solutions to enhance representation, transparency and accountability in the process that we're undergoing, and I'm using my expert hat on this. I have personally participated in numerous federal advisory boards, and I know that federal law recognizes two valid and distinct options for public members who are participating. One can be either a representative, or a special government employee.
A representative provides the points of view of non-governmental entities and/or a recognized group such as Lyme patients, people who treat Lyme, et cetera; doctors who especially treat those who persist in complicated forms of the disease, advocates who are perhaps promoting valid diagnostic tests such as the nested PCR/DNA sequencing technologies that uses direct detection and is currently available, and can actually identify the illness before it disseminates.
In contrast, a special government employee, which is what the current public members have been asked to do, promote government interests first, and are under the supervisional and operational control of the agency, in this case HHS, even on the days when they are not serving on the working group.
And as employees, their wide ranging restrictions include legal, financial, representational, and research limits. For example, they are not allowed, according to the law, as an SGE, to testify against Department of Health Officers, or government line policy, or on behalf of the human rights defenders of this group. And when I talk about that human rights defenders I talk about the researchers, the scientists, and the practitioners of health, who are getting much needed care to this patient group.
They are not allowed to generate earnings from research presentations, publications, and media events that counter the Lyme --the CDC's Lyme propaganda. They are not allowed to state that the CDC Lyme policy does not support human rights violations, or ignores the many potentially fatal medical conditions caused by Lyme. And I want you to know that these are all on record since June 2017. They were accepted by Dr. Dainius Puras, who is a special Rapporteur for health and human rights.
So, given these considerations and options, I recommend that all members be converted to representative status. Thank you.
Rachel Nevitt
Me too; I have been violated by multiple individuals multiple times, and I am not alone. My perpetrators are repeat offenders, hailed as pillars of the medical world, they are the righteous keepers of the Infections Disease Lyme Guidelines. They are the definitive authorities. They are the priests, the uncles, the Harvey Weinsteins, and they abuse their power.
We know in part that they are perpetrators because they do what every good perpetrator does, they deflect their guilt by blaming the victims, the patients, who are condescended to -- "Lyme doesn't cause those symptoms," ridiculed -- "Oh, did you find that on Google?" and written off -- "It's not Lyme, it's conversion syndrome."
And just to make sure that the perpetrators preserve their air of superiority, they constantly discredit and de-legitimize the Lyme specialist, who threatens their impervious shields with scientific evidence to the contrary.
I have attended numerous talks by infections disease doctors, and Dr. Christina Nelson of the CDC, all of whom spent more than 50 percent of their talk making it very clear to their audiences -- medical students, and primary care providers, that Lyme practitioners are quacks, who have gone rogue off the guidelines, and will endanger patients' lives with their treacherous protocols.
Then, you have these treacherous protocols, are the very same prescribed long term by dermatologists for teenagers with acne, by infectious disease doctors for patients with TB, by PCP's for seniors suffering from frequent urinary tract infections. But for some reason if a Lyme doc prescribes it for a bacterial infection it's considered life threatening.
If I had cancer, doctors would think nothing of prescribing toxic cocktails that might save me, because presumably it might make be better than my current cancer ridden self. Well, that's where a lot of Lyme patients are at. When I found myself so sick that death looked like a better state than the life I was subjected to, me the antibiotic free organic farmer, subjected myself to antibiotics for one of the first times in my life.
I subjected myself for three years straight, lots of them, in crazy doses I can't even imagine. And you know what? Under my Lyme doctor's care, I did not get C. Diff, my PICC line did not get infected, and I am so much better than I used to be. Truth: my Lyme doctor did not kill me. My Lyme doctor did not harm me. My Lyme doctor used careful treatments that have been proven to make some folks better without making them sicker. My Lyme doc saved me while other local doctors left me to get sicker.
There's something seriously wrong with a medical system that allows infectious disease doctors, rheumatologists, neurologists to diagnose psychiatric disorders but won't let a Lyme doctor diagnose Lyme. There's something wrong with a medical system that punishes good doctors who think critically and question the perpetrators, and listen to the victims. It's time to stop the madness. It's time to reveal the serious perpetrators. It's time to openly admit that this medicine is seriously flawed. It's time to stop blaming, and start listening to the hundreds of thousands of victims. It's time to call off the medical boards and let the good doctors, the critical thinkers, take the lead and heal the sick, and start healing this very bad chapter in our medical history.
The day of reckoning will come. The culture of cover up is crumbling everywhere, even here in Washington. Perpetrators are being held accountable, victims are being believed. So, ask yourself: when the day of reckoning arrives which side do you want to say you were on?
Enid Haller
It's Enid Haller, and I have a Masters in Social Work, and a Ph.D. in clinical psych. I am on the Board of the Dean Lyme Center, and have been a Lyme advocate for nine years.
For the last 11 years I've lived on Martha's Vineyard. And I have been trying to educate everyone on the Island about chronic Lyme disease. I started the Martha's Vineyard Lyme Support Group nine years ago, and the Lyme Center of Martha's Vineyard five years ago.
During that time I've only received help from and support from the alternative and holistic practitioners, and including physical therapists, naturopaths, chiropractors, et cetera. The Martha's Vineyard Boards of Health, the island's community services, the local doctors, and health care providers, and in the walk in clinics, and Martha's Vineyard Hospital, have been of no help to our chronic Lyme sufferers for over 30 years.
Most people I know who have chronic Lyme on the Island, including myself and my family, have never tested positive for chronic Lyme using the two tier testing model, the ELISA and the western blot.
I was not -- it was not until I suggested the island patients start to use the IGeneX lab that we all finally started getting the correct diagnosis. Confusion in the medical community has been compounded by the actions of insurance companies who have both denied patients important care, as well as proactively threatened and revoked the licenses of doctors who engage chronic Lyme patients seriously.
This has created fear among the mainstream doctors, and has created an increased the rate at which normal, easily treatable acute cases of Lyme have gone chronic. My support group has 859 names on the mailing list, and we are not alone. There are thousands of Lyme support groups across this country and the world that provide support at this scale.
The number of people in Martha's Vineyard who carry chronic Lyme disease, and the co-infections boggles the mind. Many of the patients on the Vineyard believe that they were infected from the LYMErix vaccine that was heavily given years ago, only for a year. But many do believe that they have contracted it from the vaccine.
The Lyme stricken patients travel from one specialist to another until their patience and budget strains to the breaking point, or they just suffer in denial and silence. The treatment of choice then becomes self-medication through alcohol and pain killers, which are typically opiates. It personal --at personal cast of our inability to systematically cope with this growing disease is staggering.
I've been directing chronic Lyme sufferers to Lyme literate doctors for many years now, but most cannot afford to travel and see these doctors who have to charge out of pocket due to the lack of insurance coverage for chronic Lyme.
Finally, we are at the tipping point, and the Island medical community is slowly begging to acknowledge the depth of this problem. Martha's Vineyard is known as ground zero for chronic Lyme, because towns are all in the top ten list of the Massachusetts Department of Public Health: one: Tisbury, two: Aquinnah, three: Edgartown, and ten: West Tisbury. The Lyme fiasco is a financial and economic disaster. Insurance companies would save money if they would allow Lyme literate doctors to share their knowledge, and be accepted into the system. Our mainstream doctors need to be helped and educated about how to diagnose and treat chronic Lyme.
This is a terrible disease, and the situation can be turned around. With the proper incentives and honest medicine, millions of people can get their lives back, and an equal number can be prevented from suffering so badly. And if I -- if myself and my family had not gone to Dr. Richard Horowitz, I would not be here today. Thank you.
Susan Green
Good afternoon, and thank you for your service. My name is Susan Green. I'm an attorney, and I've been practicing law for more years than I admit at this stage of my life. I also am a Lyme patient.
Approximately 10 years ago I was in the middle of a trial. I had a seizure. I lost my ability to speak and retrieve language, curled up in a ball, and all of my limbs were twitching, and I would remain that way. My memory was completely wiped out. I would remain that way for quite some time.
I went to doctor after doctor, same story; nobody knew what was wrong with me. Finally, I begged a doctor to give me antibiotics. He was infectious disease doctor. He said to me, "You don't have Lyme disease," he says, "but you're so hysterical, I'm going to give you another test. And I'm going to give you the antibiotics just to calm you down." Very reputed doctor at John Hopkins; so he gave me the test, and he gave me the antibiotics.
You can imagine his surprise when several days later, Wednesday at 6:30 in the morning, he called me and told me I was off the charts. I had had four prior tests, they were all negative. He --I went to his office, and I had the most unusual experience.
He leaned across his desk, and he pushed a barrel of antibiotics at me, and he said to me, "I can't treat you. You're a very, very, sick woman," and he said, "But I would be drummed out of my society if I were to treat you with long term antibiotics. I'm very sorry. You're going to have to find another doctor." And I went from state to state, looking for a doctor who could take care of my needs.
I would be 20 months of IV antibiotics, and 72 hyperbaric oxygen dives before I would resume my ability to speak. I do believe I would be dead today, but for the doctors who risk their licenses to treat me.
We have a terrible problem. As an attorney I told all these doctors, f you get me back my ability to speak I will help you." Because these doctors come under attack from medical boards on a regular basis. They come under attack simply because they prescribe long term antibiotics.
It's insane to me that a child with acne can get a year of antibiotics to treat their skin, but a person with a progressive and potentially fatal disease cannot get treatment for more than 28 days because we are the only population that seems to get the superbugs. It doesn't make any sense, okay?
So, I defend doctors' licenses before the medical boards. Many patients who saw that their doctors were going to be in jeopardy of losing their licenses gave gone around the country and passed laws to protect doctors who proscribe long term antibiotics.
Everybody, the whole community would celebrate when these laws were passed. But I'm here to tell you that it hasn't stopped the medical boards. Because what they have done now is they go around, and they charge these doctors with --they hold them to a higher standard of care. They engage in a discriminatory practice of singling out these doctors based solely upon the type of medicine that they provide.
And now they will go into their charts, they'll hold them to a higher standard of care, and they'll charge them with coding violations, record violations, record keeping violations, and they are still in danger of losing their license. They spend exorbitant amounts of money defending themselves just be able to serve the community. I ask that you unfetter the hands of these doctors who are on the front line of battling, trying to find a treatment, and help these very sick and marginalized people. Thank you.
Linda Osborn
Thank you very much for the opportunity to speak today, and I'm delighted to see this collaboration of individuals working on this tremendously important issue.
My name is Linda Osborn, and I'm a resident of Hunterdon County, New Jersey. I live with my husband of 23 years, and my 19-year-old daughter, who is currently attending the University of Delaware. If it wasn't for finals she would be in attendance with me.
My story is similar to the many you've already heard. I was misdiagnosed for probably at least two decades, maybe longer, due to false negative results produced by recommended two tier testing. The exact timeframe of my infection is unknown. But I do recall when I was about 10 my parents removing an embedded tick from my head, and that was in 1974.
I was 10. I don't recall a lot of details from that time, but I do distinctly remember that year I received my first C on my report card. And I was pulled aside by my teacher for some moral support, and TLC. I was off. And she could see it.
Let's fast forward. In my early 20's I spent many hours rock climbing, hiking, mucking about the gunks in New Paltz, New York, and in Vermont, and other parts of New England. I was always outside. And it was then I started noticing some cardiac symptoms.
By my late 20's I became depressed, and shortly thereafter was diagnosed as bipolar. I believed that that diagnosis set the trajectory for the next decade of horrific experiences that I had with M.D.'s and specialists. What happened is my mental health was designated as my illness, when in reality, my undiagnosed illness was causing my mental and physical decline.
Where my story diverges from others is that I did have a very difficult childhood. There was in fact a degree of mental dysfunction that resulted from the challenges of my earliest years. I was a product of my environment, and therefore I accepted my diagnosis, and continued in a downward spiral with a growing list of physical symptoms and behavioral changes.
But here's the key point: despite the challenges that presented my life in my first 20 years, I was never suicidal. I was bullied, I was teased, but at that time there was no internet. However, guess what? There were bathroom walls, and that was the 70's and '80's version of Snapchat.
The key point here is that I became suicidal once I got into the advanced and late stages of Lyme disease after not having been diagnosed for over 20 years. And what made that insult to injury worse was that I infected my only unborn child through pregnancy and/or breastfeeding.
So, as I lay in my bed, uncomfortable in my skin, misery, with trying to get through the treatment of this insidious disease, I wanted to kill myself, but I couldn't, because I had to stay in this world long enough to be able to help my daughter through this insidious disease, and at the same time contemplate whether she was also having suicidal thoughts.
Gentlemen in the room, I would like you to sit and think about your wives, and your children, and think about what it must be like to wonder every day when you come home from work, whether you're going to find your wife in bed, dead from an overdose, or your child swinging from a tree in the backyard.
This is the reality of what this disease does to people when it is not diagnosed. And I will add: I did see in LLMD, and I did go for alternative testing, and I was tested positive for Lyme, for Rabezioal-1 [phonetic sp], or Brucella, for Mycolpasma Pneumo, for HVV-6, for and MTFR gene mutation, for candida overgrowth, high levels of lead, high levels of mercury, adrenal failure, kidney failure, liver failure.
I did extensive antibiotics that brought me back to life. I was pulled out of the grave. But I will tell you, I'm not cured, either, and nor is my daughter, who finally tested positive after several rounds of antibiotics. Thank you.
Jennifer Heath
Hello. Thank you all for having me be able to speak today on behalf of all us that are sick and dying with Lyme disease that are not being diagnosed properly, or treated.
Thank you for sharing your story, because people are dying. The number one cause used to be heart attack or stroke. Now it is suicide because people can't get the treatment they need.
My personal journey began dealing with Lyme disease, not knowing that I had Lyme disease, in 2013 when I became deathly ill after having a routine dental cleaning, and I found a root canal tooth, the crown of it had to be removed and replaced. When they did that the infection went into my body. I got very sick, went to doctors, ended up in the hospital; was said that I needed to have a hysterectomy, had that, almost died with an infected abscess hematoma. After that was --fortunately the doctor on call made a lifesaving decision that saved my life that had a surgery, that --they thought it was just an abscess, but when they got in there it was an infected hematoma abscess.
So, I was asked if I wanted a chaplain. I said no, because I was prepared to die. I wanted to die at that point, I was so ill. And I'm thankful to say that I didn't because I got see my granddaughter recently, just born. That was something that I didn't think I would ever see possible.
So, I went through a year and a half of doctor, after doctor, specialist after specialist, trying to figure out the next set of, like, four cancer scares. The next doctor I was going to see was an oncologist. But unfortunately, I ended up in the ER, and when I -- I had just had the ELISA test that -- I was one of the fortunate people that, 15 percent of the population only are seronegative -- I mean seropositive.
So, I actually had an antibody response. And so, the CDC called me, asked me if I was out -- ever went outside of our county, and I'm like, of course. I just went up at my daughter's destination wedding.
So, I asked them who can I go to, because in the ER, in the emergency room when I told UFM that I had --I needed extra tests for Lyme disease, the western blot, they said that they don't diagnose nor treat Lyme disease in the ER.
And the next person that I had to see was an infectious disease doctor, that had a three month waiting list, and I didn't have three months to go, because at that point I'd had already done two weeks of antibiotics, and I started throwing up for nine days straight, and I was left to die.
I had great doctors before that, but everyone that I went to and talked to, when I mentioned Lyme they go, "You know what, I'm sorry. We don't treat Lyme disease," you know, like, "We'll help you, we'll run tests or whatever, but we don't diagnose nor treat Lyme disease." So, I didn't know where to go.
So, praise God, I have been on my health journey for 30 years. I've worked with renowned nutritionists and holistic doctors, and so I went from doing the western medicine that almost killed me, for a year and a half I went back to holistic medicine, and I started treating it holistically with deep tissue cleansing, enzymes, and oxygen treatments, things that are voodoo to our medical world, and that need to be implemented. And I thank God for Dr. Horowitz that does that, that brings that in, because we need more practitioners like that, and I [unintelligible] actually recognize that this is more severe. So, I just want to thank you.
But yeah, right now we have this fake Lyme --it's funny that there's no proper testing for Lyme disease, but right now the CDC is test marketing a new vaccine for Lyme disease, but how can you test for a disease that you don't even know how to test for? How can you make vaccine against something that you don't know what to test for? So, you know, I think that we need to revisit that, and call your Congress people, and ask them to investigate the two tier testing, because that testing is flawed, as we all hear here. People are not being diagnosed. They're being left to die. So, thank you so much for letting me speak.
Jennifer Leblanc
Good morning. My name is Jennifer Leblanc. I'm currently an infection control practitioner at the University of Maryland Medical Center. My bachelor's degree is in molecular and microbiology. I have a master's degree in clinical nutrition. I attended a three and a half years of medical school, and recently I was blessed enough to have graduated from the Johns Hopkins Bloomberg School of Public Health.
My story starts when I --I was born and raised in South Florida. I became ill when I was about seven or eight years old. My family often went camping in the swamps of Florida. I soon had neck pains, went to doctors after doctor. My mom brought me for one of the necks, no one could figure it out. One pediatrician thought, "Well, maybe you should have exploratory spinal surgery," and my mom said, "I don't think so."
Nevertheless, I had symptoms that waxed and waned. When some symptoms would disappear, several months later, or even years later, more symptoms would come back. And then they'd be worse. And then my symptoms would go away, and they would come back, and they would bring friends.
Well, since I was a pre-med, you know, I was going to this conference where Dr. Oz was presenting, and that's how I found the doctor who diagnosed me. And I said, "Great, I have an answer, Lyme disease. And how do we treat that?" And he's, like, "Oh well." And so began my additional frustration of this journey.
Well, I soon discovered a wonderfully courageous physician who demonstrates not only courage and persistence, but wonderful faith as well. And it is because of him that I am standing here, not in pain. I am standing here speaking, I am seeing, and I am breathing. And I say that because I was having seizures at which time I stopped breathing. I was driving on the highway, at which time I stopped seeing. I went completely blind on two separate occasions. I had a hard time walking. I felt like my legs were jello and would give out any time.
I couldn't come up with a sentence, and here I am speaking in front of all of you. And so, it is because of physicians like those who represent ILADS that I am standing here, that these patients are still alive and breathing. And when I was at Hopkins, we have to do a capstone project. And last year there was a publication in the New England Journal of Medicine, and I became very frustrated. And I said, "You know, why don't we just clean the slate? Let's start over again." So, for my project I want to go ahead and say, "All right, let's put everything on the table. Here's the IDSA side, here's the ILADS side. And this is what I want my research proposal to be for my capstone project."
The directors of the Infectious Diseases Capstone Project literally laughed at me. And I knew their response when I would ask this question. But I said, "Doctor so and so, can I ask why you laughed?" And she goes, "Well, let's just say I don't believe in chronic Lyme. It doesn't exist." And I said, "Ok, well, that's what I thought."
What we need is education. I have educated over a 140 medical students on the accurate information Lyme disease. There are hundreds of publications that represent what many of us are talking about here today.
I would like us to further diagnostic testing by using metabolomics, nanoparticles that are already being investigated. We need to take advantage of the brilliant minds of the epidemiologists and public health sector, who can help us identify exactly where these pathogens are. And I promise you that that CDC map will be not just blue in this corner, and that corner, and the other corner; it will be pretty blue.
So, I --with my three minutes up, I just encourage all of us to continue to work collaboratively, and include the public health sector, and educate those who are in medicine, and entering medicine. Thank you so much.
Christine Lorenson
Hi. My name is Christine Lorenson. I believe I was born with tick borne illness. I experienced excruciating pain as a child that no one took seriously. I had one known bite as a child, but it wasn't until I got bit by something in Costa Rica that I was unable to function.
I have my struggles dealing with the roller coaster of treating and relapsing, dealing with insurance denials. After finally starting to improve on a treatment regimen and tough conversations with my husband, when paying out of pocket is the only option, I often feel like my treatment is at the mercy of what my insurance company will pay for, not what is most effective for my treatment.
But I'm still one of the lucky ones. I'm lucky because I'm alive, and I'm here today. So many do not make it. The ability to get coverage for treatment, the lack of acceptance and knowledge, the loss of function, the pain, the loneliness, the bullying by doctors who follow outdated guidelines, and ignore new research, who send us for psych consults, it can be too much for our bodies and our minds to handle.
I am here today to give voice for those who are no longer able to fight. The current situation is not working. We are at a point where doing nothing is no longer an option. I ask the working group members to put aside greed, ego, and politics. This is an epidemic and one that can be solved if everyone puts forth the effort to do the right thing in an open minded collaborative manner.
My friend's daughter, Keara Mitchell was one of the ones we lost this year. She was a young woman who contracted tick borne diseases as a child, in New York, is did her sister and brother. Keara was 19 years old. She should have been in the prime of her life, but instead dealt with severe effects from Lyme and co-infections.
In honor of her, her family started Keara's Traveling Stones. People leave a stone in some place they think Keara would loved to have been well enough to visit. If I may, I'd like to give each of the members of the working group a stone in honor of Keara, who I believe would have wished to be here to witness this historic collaborative effort, to bring forth change that she knew was so desperately needed.
I ask you to keep it as a reminder of the thousands that we've lost, especially those who can -- who choose death, because the pain of living and loss of hope was too great to bear. They will not be forgotten. Thank you.
Bob Sabatino
Thank you. I'm going to try to keep myself short, and on my own time. I would like to thank members of the armed services that are here, and members of nonprofits and research organizations and doctors.
I'm here both as a patient and an advocate. I am the Founder and Director of Lyme Society in New York. I've had what I would call pleasure of meeting many of you already, people in this room and people watching.
A few years ago, I had the pleasure of meeting Kristen Honey. I don't know if it was at an open data event, or a Lyme event, but every single one has always been positive.
I started out very sick, very ill, Lyme and co-infections. For everyone that knows me this is probably the best shape I've ever been in, right now, and I'm still treating, every day's hard. I couldn't be here yesterday, so I thank you for the time today. Through our time this is one of the most unique opportunities I've seen happen. I've known over many years it's been very difficult for two sides to come together.
This is so important for everyone to see. I've had the luxury of working with many of you, and I say a luxury, because being the patient and being that sick, I go home every day. And at the end of the day I don't wear the hat of a husband, a father, an advocate. It's a patient. I start it that way, I end it that way, and it's something I live with.
But as an advocate, all I have seen in the past few years is positive actions coming from the Lyme community, because there's the opportunity to hear two sides of a story. There's an opportunity to work together.
As Kristen said yesterday, let's hit the reset button, let's start something new. There is an opportunity to have a change. If we redefine it, we redefine it. But for patients suffering, ill, going through the changes --I have a device in my chest. I've lost my knees. I've lost my shoulders. I had Bell's palsy. I had all the symptoms that many here have suffered worse than me. But I am here today.
There is that fighting chance to do something. And I applaud you all for being in the working group, and I just hope that everyone around the country sees this as something that's going to change; two sides three --whatever it is, is going to come together, listen, and help each other for the patient.
My treatment has not been the normal treatment. The normal treatments did not function properly for me, they didn't work. The unorthodox way that we have worked it together has made a difference. That doesn't mean it's going to fit patient A, B, and C. But it fit me.
I'm shorter than your time, and I want to keep it that way. I wasn't able to make it. I thank you all for the opportunity, and I applaud you for what you do, and if there's anything I could ever do to help anyone I would love the opportunity. And again, everyone: keep fighting the fight. We're all here together. There will be a change. Thank you.
