Help Aubrie Pay for Lyme Disease Treatment

For: Aubrie Marrin
New York
Organizer: Friends & Family of Aubrie Marrin
Help Aubrie Pay for Lyme Disease Treatment (Aubrie Marrin)
$36,966
of $90,000 goal.
Raised by 364 donors
41% Complete
This fundraiser is closed. Thank you for your support!

The Story



Aubrie is on the path to recovery, but the battle toward getting her health and her life back is ongoing as she recovers from spinal surgery and begins treatment for Lyme Disease, Babesiosis, and Bartonella.

She's still healing from the spinal fusion surgery of May 6. In the past six months she has been able to walk and move more comfortably, as we wait to see if the surgery was a success and the spinal bones fuse and grow together. Unfortunately, due to the amount of scar tissue removed from her nerves and spinal cord and the delay in having surgery, she may have permanent nerve damage. This damage, along with a condition called Chronic Regional Pain Syndrome (CRPS), leaves Aubrie in an enormous amount of pain. Currently, her pain management specialist is working to control this pain, but again it's a game of wait and see. CRPS is considered one of the most painful conditions to affect humans, and the prognosis is uncertain. But next up for Aubrie, once her pain is hopefully better managed, is physical therapy--an arduous process, yet one that points up. Back at her first follow-up appointment with her spinal surgeon in July, he gave her the surreal news that hers was the most complicated surgery he had ever performed--and the good news that x-rays are showing that she’s growing new bone and the fusion shows early signs of healing.


The past five months would’ve been impossible without the people who stepped up and gave amounts small and large.
The money has gone toward hospital visits, health insurance, transportation, prescriptions, and basic living expenses such as food and rent as Aubrie has recovered. (Her last job let her go in 2014 as she was not well enough, because of her failed back surgery and Lyme disease infection, to work.) It’s not an exaggeration to say everyone who helped has already improved and probably extended her life; without the surgery, her prognosis for walking in a few years was dim, as spinal fusion hardware and bone were crushing her L-5 and L-4 nerves, causing muscle weakness and putting her in excruciating, constant pain.

The next step is another big one. She needs to treat three tick-borne illnesses that she has probably carried since around 1999 but only recently had diagnosed: Lyme Disease, Bartonella, and the malaria-like Babesiosis. When we first started this fundraising campaign, we had no idea that she was also infected with Bartonella and Babesiosis in addition to the Lyme, making her treatment ever more vital. Aubrie has finally been able to see a Lyme specialist who has charted a course of treatment for these three often-overlooked bacterial and protozoan infections. Most of the drugs are expensive and not covered by any insurance plan past only a few weeks’ course, so anything longer will have to be paid for out-of-pocket. Other drugs aren’t covered at all. Running out of cash will mean interrupting those treatments--causing treatment failure--and forcing Aubrie to start the treatment regimen again from zero.

Aubrie has been ill for years, and has done her best to get around a world built for the well.
Post-surgery, the need to treat these infections has become downright urgent. Her Lyme disease specialist told her it’s likely the tick-borne illnesses accelerated the disc degeneration and weakening of the bones in her spine for years. For her back to continue to heal, it’s imperative that she get this steady, expensive course of antibiotics and antimalarials, or the second surgery could fail. Also, because the Lyme infection has had time to infect her brain, spinal cord, and her central nervous system, Aubrie is facing not only irreversible physical damage, but the loss of brain function as well, from memory loss, to vision changes, to aphasia (trouble recalling words, names, places), among other cognitive deficits--all devastating effects for a poet and a passionate, creative person.

We know only some of the costs she’ll face throughout this next treatment gauntlet. Her insurance, a powerful plan that not covered her surgery and post-surgery care and many other treatments that Medicaid would not cover--is $900 a month. Despite it being a top-shelf insurance plan they still will not pay for her Lyme treatment. A visit to her Lyme specialist costs $650 out-of-pocket. Tests there to check treatment progress of the three tick-borne illnesses run approximately $600, also out-of-pocket. The antimalarial drug, Mepron, that she needs to treat her Babesiosis, costs $1,800 a month, and Aubrie needs at least a two-month course--also not covered by any insurance plan. The three other meds to start on these infections may be covered by insurance, but even if they are, won’t be covered beyond a month. The full course of treatment may include intramuscular antibiotic shots; IV antibiotics; and lots of other costly unpleasantries.


These are scary-ass numbers! But they’re by no means insurmountable
. Earlier this year, in the space of a few weeks, people pulled together to share this page nearly 800 times and to donate more than $17,000 -- an amount that was literally life-changing. If we can do something similar over the next few months, Aubrie may truly get her life back, for the first time in 16 years.

During the last several months, Aubrie has also been writing a series of essays about living with illness.Part 1 of the first essay, titled "In the Kingdom of the Sick," is meditative and highly personal--a glimpse into what it’s like to fight for years just to get a diagnosis. Take some time with it if you can: read it, share it, help raise awareness about tick-borne diseases. The essay is the latest update in the Updates section on this site, posted August 6, 2015. They'll be more writing from Aubrie to come, so please check back for more posts.


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Original Fundraiser Post - March 4, 2015


The story of why Aubrie Marrin is asking for your help today is long
. The short version is that at 34, through no fault of her own, she has been through a labyrinth of surgery, chronic illness, and expense. You know those statistics on how many American bankruptcies result from medical bills? This is about to be one of those stories, with the added tragedy that, without urgent treatment soon, she'll also be chronically ill and permanently disabled. In January an orthopedic surgeon told her sympathetically: "You are the poster child for what's wrong with America's health care system." So here's what we're trying to do for her: Cover her private health plan so she can get a back surgery (her second) and treatment for her Lyme disease. We also want to help with basic living expenses while she's unable to work due to illness and surgery recovery. If there's any money left over, we'll put it toward saving her teeth, which thanks to the Lyme and lack of dental insurance for years are literally falling apart. Anything you can give will be deeply appreciated.

Now, the longer version. It doesn’t make for easy reading.

As an undergraduate at New York University, Aubrie thought about going into medicine—becoming a family practitioner, an infectious disease specialist, or perhaps a surgeon. Biology had always fascinated her: anatomy, pathology, the natural world at large. She'd raised animals as a young girl in the Hudson Valley, and there was rarely a day when she wasn’t outdoors. She wound up pursuing poetry, earning a bachelor’s at NYU and then her MFA at Columbia. She is foremost a poet—her first book, Incognitum, a book intimately connected to science and nature, comes out this spring—but she still maintains a passionate interest in medicine. She has to, really, because medicine found her anyway.

Aubrie was a working poet (day job: merchandise manager at a clothing shop in Brooklyn) and avid world-traveler, until two years ago, when a cascade of health events caught up to her. First was the Lyme disease, which she had since age 19 without getting a proper diagnosis, despite numerous tests. False negatives are rampant with Lyme, and the tests that insurers cover are unreliable at best. When you look through her medical records and the sheaves of scribble from her many doctors you see the same note repeated time and again: “Patient requested to be tested for Lyme. Cites frequent exposure to deer ticks. Clinical symptoms consistent with the disease. Serology negative.” She knew the symptoms and her own body, but doctor after doctor lacked up to date knowledge of the disease and put too much faith in the standard tests for Lyme, which miss about a third of Lyme infections. Not a single doctor thought to treat her with antibiotics, even as a prophylactic. Unfortunately, some people never test positive for Lyme Disease once infected, making the diagnosis a complex combination of one's exposure to ticks, blood tests, and most importantly, clinical symptoms.

At age 33, still unknowingly infected but chronically ill from Lyme, Aubrie underwent a major spinal surgery to repair a host of degenerative conditions: a fractured vertebrae, two herniated discs, spondylolisthesis (a painful condition in which vertebrae slip off one another during movement), and the resulting compressed nerves and sciatica in her lower back and legs.

The surgery did not go well. During the operation, doctors discovered she also suffered from a rare form of spina bifida that’s difficult to diagnose, where pieces of the spine in the lower back are malformed, or missing altogether. When she woke from surgery, she had severe weakness and numbness in her left leg and foot. As she learned to walk on her left leg again, she found it hypersensitive to touch and temperature; even putting on a sock and shoe became unbearable. Pain management specialists and her surgeon tried to treat the nerve pain with medications, injections, and physical therapy, hoping the nerve was just irritated. Nothing worked.

A year into recovery, it became clear that the hardware in her back—two titanium cages placed along her vertebrae to help fuse the spine, and two titanium rods and six screws to rebuild her lower back—was shifting, slowly. The cages, shaped like metal bananas, have rotated from their original position and are narrowing her spinal column, pressing against vital nerves that control her legs and lower back. The pain in her left leg is now constant, like a steady electric shock, and is debilitating even with powerful painkillers. Without another surgery, she eventually will not be able to walk.

Separately, the back surgery aggravated her untreated Lyme infection. As a bacterial disease that attacks the joints, the immune system, the heart, and the central nervous system, Lyme can already cause nerve damage and inflame existing nerve pain. The disease also robs the body and mind of energy, causing extreme fatigue and severe cognitive deficits, and a whole host of other symptoms. Add to this a major spinal surgery with nerve damage, and the results are grim.

Six months after the surgery, Aubrie finally got the Lyme disease diagnosis. This at least put the world in a sort of dark order. It also helped explain why since her early 20s she had suffered from a series of infections in her teeth, a common ordeal for Lyme patients who don't have preventative dental care. Since 2003, Aubrie has undergone 10 root canals. Five of her teeth have fallen out or had to be pulled, and her others are cracking and splintering. For all the pain and trauma of her dental situation, it's still far from her most urgent medical need.

Despite the Lyme diagnosis, her private insurer at the time denied coverage for a 3 month course of IV antibiotics, which was prescribed by her doctor because of the late stage neurological phase of her infection. Aubrie pushed back relentlessly against the insurance denials. She filed and lost two appeals, then finally filed a complaint with the New York State Department of Financial Services. The state ruled in her favor and compelled the insurer to cover her treatment. But she got sicker and sicker during those three months of appeals. Recovering from surgery and suffering from Lyme, Aubrie had to take medical leave from her job. A year ago, just a couple of months after she won her complaint, she was let go from work. Losing her job meant losing her health insurance, and with it, the antibiotics. Her hard-won treatment was again interrupted after just one month, and the treatment failed.

For the past year she has been scraping by on unemployment insurance and Medicaid, which no Lyme specialists accept. She has been getting sicker, and with her back worsening, movement and sitting have become quickly painful. She interned for an online magazine this past fall, allowing her to work from bed. But staying connected to the professional scene in New York has been impossible. In February, her unemployment benefits ran out. She pushed her remaining savings into a top-shelf private health plan that her new back surgeon will accept, disenrolling from Medicaid in the process. Arranging a consultation with a surgeon who could handle her next surgery took months. He seems like a good guy, who gets it, and is one of the best in his field. Unfortunately, he also assessed the surgery she'll need and said it was the most complex he had ever seen in a person so young. (He made the "poster child" remark. It was actually a kind moment, for someone to take notice.)

Aubrie’s approach is to joke about being the Six Million Dollar Woman. (We have the technology! We can rebuild her!) It won't cost anywhere near that to fix her, but it will not be cheap. When people hear about her straits, they are always deeply sympathetic. The first question usually to follow is, Can her family help? The answer is, sort of. She has two parents and a brother who love her and have tried to help as they can, but her parents are both struggling financially and can’t even afford health insurance of their own. Her brother contracted Lyme as a boy 30 years ago, not so long after the first cases started appearing in Lyme, Connecticut. Because he went undiagnosed and untreated for two years while doctors and scientists tried to figure out this mysterious illness, he, too, still suffers from the disease.

Aubrie is not a person of means. As a poet she always planned to earn a modest living and to support her art. Yet she does not bellyache, does not seek attention for her situation, and does not ask for help lightly. This measure here, this plea you're reading, is a last resort.

Her living expenses are modest. She splits an older apartment in Brooklyn with two roommates, and her dog, Gary. A little bit of money will go a relatively long way for her. But the bills she is facing over the next six months are substantial. Assuming her private insurance covers most of the surgery (sticker price: around $300,000), she will still be expected to cover several thousand dollars in out-of-pocket costs. The Lyme treatments, ever more urgent, will cost perhaps $2,000 a month past what her private insurance will cover. In all, we estimate it will take $85,500 to get her through this gauntlet. Anything beyond that, once her basic expenses are covered, will be put toward trying to save her remaining teeth (an additional $26,000). Aubrie will of course be applying for food stamps and Disability, but Disability can take anywhere from 6 months to a year to be approved, if at all, and time is of the essence. Additionally, disability payments would not be enough to support Aubrie through her current health crisis. We will post any updates on her progress toward securing government assistance. (We will be adding a breakdown of her monthly expenses and medical costs for the year soon, so please check back.)

So she's down to this. On the personal front, she has to pay for a roof, food, electricity, outstanding medical bills, and an occasional subway ride. Medically, she needs to cover the $875 a month premium for her insurance (she is not eligible for any Affordable Care Act subsidies, as she is unable to work); the costs of Lyme treatments; a yet-unknown share of the surgery, hospitalization, and ongoing rehabilitation and physical therapy costs after surgery; and, luck willing, dental care. The good news is, she's still young, she's tough as saddle leather, and she's determined to get healthy and earning again. Despite a lifetime's worth of medical problems already, she is working, when she can, on her second book, and beginning to write to raise awareness for Lyme and other tick-borne diseases. This fundraising campaign is meant to get her rebuilt, patched up, and back on her feet. Any amount—$5, $25, $100—helps, and is deeply appreciated. Donations of $200 or more will include a signed, first edition copy of Aubrie's first book, Incognitum.

If we succeed in this fundraising effort, Aubrie should be a new woman by year’s end.

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To order Aubrie Marrin's new book, Incognitum, visit the Shearsman Books website here:

http://www.shearsman.com/ws-shop/category/1419-marrin-aubrie/product/5043-aubrie-marrin---incognitum

The book can also be ordered from Small Press Distribution, a website that supports small presses: http://www.spdbooks.org/Producte/9781848613973/incognitum.aspx?rf=1

Other places to order include Amazon: http://www.amazon.com/Incognitum-Aubrie-Marrin/dp/1848613970/ref=sr_1_5?s=books&ie=UTF8&qid=1423155152&sr=1-5


And Barnes and Noble: http://www.barnesandnoble.com/w/incognitum-aubrie-marrin/1121182142?ean=9781848613973 


To read some of Aubrie Marrin's poetry online, please see the following links:

https://www.guernicamag.com/poetry/marrin_12_1_10/

http://ilkjournal.com/journal/issue-three/aubrie-marrin/

http://www.everyday-genius.com/2013/10/aubrie-marrin.html

http://sinkreview.org/sink-9/yucca-mountain/

http://www.noojournal.com/view.php?mode=1&issue=weekly&id=459

http://www.noojournal.com/view.php?mode=1&issue=weekly&id=460

http://www.harpandaltar.com/interior.php?t=p&i=9&p=79&e=238



Fundraiser Updates

Posted on July 20, 2016

Posted on July 20, 2016


TICK-TOCK: An Update on Aubrie’s Ongoing Battle with Lyme Disease & Co-infections, & Her Recovery from Back Surgery



Before we ask for your help with Aubrie’s fundraiser, it’s worth looking back at the gains she has made in the year since her back surgery. That procedure, which corrected a failed 2013 surgery, was made possible by the generosity of family, friends, and kind strangers — and it changed her life profoundly. It was made possible by all of you. Here’s what has happened since.


:: MRIs show that the revision surgery to her lower back (a procedure her surgeon later called “the most complex” of his career) was a success. Gone are two of the titanium implants that were shifting in her back, as well as the scar tissue they were creating on several nerves. The vertebrae and bones are fusing together. This is all fantastic news.


:: Without her bones gradually eroding and shifting in her spine and crushing her nerves, she’s in less day-to-day pain, and is walking much better today than a year ago. Though she suffers from a chronic pain condition called CRPS due to her back problems and surgeries, she is managing that pain with medication and physical therapy. We're hopeful she'll continue to improve.


:: Her overall chances of leading a normal, active life have jumped dramatically. That’s something to celebrate. And she’s on her way to being well enough to write part-time again. She’s working on a second book of poetry, has poems forthcoming in Ilk and Cordite Poetry Review, and will be reading at the Boog City Poetry Festival in New York this August.


None of that would’ve been possible without the donations that have come in steadily over the past 16 months. The money people gave allowed her to recover while staying in the same apartment where she has lived for 10 years. Those donations paid for groceries, utilities, a cell phone, and transportation to her many doctors’ appointments. They bought food for her dog and closest companion, Gary. They’ve made a recovery possible.


But life with chronic illnesses is terribly slow going. In Aubrie’s case, she ran into a bureaucratic pile-up when she switched from a private health plan, which she could no longer afford post-surgery, to Medicaid in November 2015. During this open enrollment period the New York State Health Exchange and Medicaid erred in processing many people’s applications incorrectly, Aubrie’s among them. She went a month uninsured, as policies that should have gone into effect January 1st were delayed until February 1st.


For most people, holding out for one month isn’t a big deal. For Aubrie, covering her medications and doctors’ visits burned the last few thousand dollars she had. It was a devastating and sombering blow for Aubrie, to spend day after day on the phone with the state, and still wind up broke. The money she had left from her fundraiser was set aside for rent, basic expenses, transportation, prescription co-pays, outstanding medical bills, and most importantly the medication to begin her Lyme Disease treatment. Instead, those funds went toward expenses Medicaid normally covers. Though she’s appealing New York State and Medicaid’s error, we have no information on whether she’ll receive any reimbursement.


Now back on Medicaid after that long struggle, most of Aubrie’s ongoing bills for medications and follow-up exams are covered. But for Aubrie the fight has continued in 2016, and we’re asking again, humbly, for help. The surgery and a series of events outside her control -- including the health insurance coverage gap -- have delayed Aubrie from beginning treatments for the blood-borne diseases that continue to keep her bedridden most days. The regimens for Bartonella, Babesiosis, and Lyme consist mainly of intense antibiotics that promise to make her feel even sicker before they make her feel better. Because insurance companies and Lyme specialists have been at loggerheads for decades, the top doctors in the field no longer take insurance, least of all public insurance, nor are the medication regimens covered.


For a long time, this loop seemed closed for Aubrie. She was in too much pain and too sick to look for work. Without work, she couldn’t pay for treatment. Without treatment she stayed sick and got sicker. And so on.


Getting the surgery a year ago put her on a path to genuine recovery. The next step is equally huge. She must pull together enough money to cover her basic living expenses for long enough to begin heavy antibiotics treatments that are likely to keep her from working while she’s on them. In New York, where even such basic expenses as food and rent are steep, this is a precarious move. But it’s one she’s going to have to make if she’s ever going to get back to normal — a possibility that, for the first time in years, thanks to you, feels almost within reach.


Recently her story caught the attention of the people who run the site YouCaring.com, which hosts her fundraiser. Editors there, moved by her writing on her illness, profiled her in a wonderful video as an example of how to best crowd-fund for medical expenses, and how to stay strong through adversity. Please take a moment to read the post and watch the video here (https://www.youcaring.com/blog/2016/three-lessons-learn-medical-crowdfunding).


Thank you again, so much, as always. This has been a year of physical pain, emotional ardor, and yet genuine humility in the face of the generosity people have shown toward Aubrie. Please continue to share her story and campaign. Spread the word. Donate. Ask others to give. You won’t regret helping.


Posted on October 28, 2015

Posted on October 28, 2015

Ticked: Aubrie Begins Lyme disease, Babesiosis, and Bartonella Treatment


Good news: Thanks to so many generous donations over the last several months as I was recovering from my spinal surgery, I’m about to begin the first stages of treatment for Babesiosis and Bartonella. Once we’re sure those infections are under control and being resolved, I’ll start an aggressive antibiotic regimen to treat my Lyme infection.


The last few months have been more than rough, and my health has unfortunately kept me from writing as many updates as I would like. I was hospitalized because of brain swelling from my as of yet untreated Babesiosis and Lyme infections, and I'm still recovering from my second back surgery. I'm managing the remaining nerve pain, physical limitations, and other complications, and about to start physical therapy--if I'm able to raise more money to keep my health insurance and pay for the weekly therapy sessions. My spine is showing early signs of bone growth and fusing so far, but it looks like my nerve pain may be permanent. It's a waiting game--taking X-rays and watching for more bone growth, hoping that my nerve pain might slowly decrease with time, controlling the pain. So unfortunately, still recovering from surgery and dealing with my tick-borne infections, I haven’t been able to work. And without money coming in, money goes right out.


Many people often ask what the other two tick-borne infections I have in addition to Lyme disease, Babesiosis and Bartonella, are. Babesiosis, a malaria-like parasite, and Bartonella, a bacteria, hitched a ride on the same tick that infected me with Lyme disease. These three tick-borne diseases together are a nasty cocktail, and require precise, intensive treatment regimens with medications that aren't your average bottle of pills.


I’ll be taking four medications at once for at least the next two months, all of which perform their own vital function and in unison also boost one another’s effects: Coartem, Plaquenil, Azithromycin (Zithromax), and Mepron. One medication, Plaquenil, an older anti-malarial drug, attacks the Babesiosis parasite, while also increasing the effectiveness of the other drugs and allowing them to better cross the blood-brain barrier and treat the bacteria and parasites that have invaded my central nervous system. Mepron and Coartem, two other anti-malarial drugs, and Azithromycin work together to combat both Babesiosis and Bartonella. They also help set the stage medically, so to speak, for treating my entrenched Lyme disease infection.


Coartem is not traditionally used in the US, but is vital in treating malaria around the world, especially in poorer countries. If you’ve been reading the news about this year’s Nobel prize winners in medicine, Dr. Youyou Tu shared the prize for her discovery of Artemisinin, an herb long-used in traditional Chinese medicine (and one of the modified ingredients in Coartem), to treat malaria. Coartem is part of the World Health Organizations “Essential Medicines List,” an index of drugs which help guide the purchasing decisions of Member States and UN agencies. Outside of the US, the drug is provided without profit to developing countries thanks to grants from the Global Fund to Fight AIDS, TB, and Malaria, along with other organizations. In the growing fight against Babesiosis in the US, more and more doctors are finding that it’s one of the best drugs we have to treat the malaria-like parasite. However, a two-month course of this medication costs over $200. Though Babesiosis cases are growing exponentially, to the point where the blood supply is becoming compromised and many people have become infected just from blood transfusions (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708872/), Coartem is not considered an “essential medicine” here. Babesiosis is the most frequent infection transmitted through blood transfusions in the US, with hundreds of people infected since 1980 and 12 people dying from these transfusion-transmitted infections. Just weeks ago, The Rhode Island Blood Bank became the first blood center in the US to begin preparations for screening donated blood for Babesiosis (http://ripr.org/post/ri-blood-center-lays-60-offset-cost-new-babesiosis-test). The hope is that more states will follow their lead, as the CDC and IDSA, well aware of the increase in Babesiosis cases, are dragging their heels and have yet to take any formal action to force blood screening for the disease or other tick-borne illnesses.


And though these four drugs are my best bet against the deadly combination of tick-borne diseases in my body, they themselves can be a toxic cocktail. Treating any malaria-like illness, including Babesioisis--in addition to treating Bartonella and Lyme disease--requires potent drugs. While killing off parasites and infections, the drugs aren’t very nice to the human body. The case with tick-borne illnesses is often that treatment exacerbates symptoms--meaning one gets worse before one gets better. I don’t know what I’m in for these next several months, or what will happen to me physically and mentally, but I have to prepared for my condition to temporarily worsen. As the Babesiosis parasites and the Bartonella and Lyme bacteria die off, they release their own toxins. Called the Herxheimer reaction, the diseases’ symptoms worsen as treatment begins. I’m not off the roller-coaster yet.


And as I begin treatment, I’m still in desperate need of donations and fundraising help to get me through my recovery.


Right now, without more help, I’m in danger of losing my apartment, my health insurance, and the ability to pay for even the most basic expenses by November. Every dollar raised so far has gone to good causes--my second spinal surgery and post-surgery treatments and medications, health insurance, rent, outstanding medicals bills, and much more. Unfortunately, those good causes have been expensive ones. Thanks to your help we’ve managed to raise over $27,000, and in all seriousness, my life has been saved. Butt just paying for my health insurance coverage since this March has cost over $8,000 in itself. So the fight goes on--both medically and monetarily.


I know many people are struggling right now in their own ways, and it’s a big ask to push forward with a medical fundraiser and to ask again for more donations--but it’s an essential ask. It’s going to take a village to get my health back--even in the US, even with Obamacare and the Affordable Care Act, even with health insurance, even in 2015. Despite some progress, the testing and treatment of tick-borne illnesses in the United States and around the world is horribly flawed and inadequate. I’ve made it this far, thanks to you, and I want to keep fighting.


The numbers can be in our favor: if just 100 people donated $10 each, that’s $1,000. That’s a month of health insurance coverage and more towards my recovery. One hundred people donating $20 each is $2,000 raised. The more we share this story, my story, the more awareness it raises for tick-borne diseases, and the more people will hopefully donate. A donation doesn’t necessarily have to be an amount of money--it can be an email to friends, colleagues, and family highlighting my fundraising campaign. It can be a tweet. It can be a Facebook post or two. Pick a day and use my fundraising link as your Facebook status, or change your profile picture. It can be a donation of artwork or other services for a fundraiser auction. It can be some advice on fundraising or a tip on organizations that might willing to help. Whatever you’re able to give, I’m forever grateful.


Please help in whatever way you can.


More soon.


xo/Aubrie


Posted on August 6, 2015

Posted on August 6, 2015

IN THE KINGDOM OF THE SICK, PART I

Aubrie Marrin




Today, a few weeks after I was able to see a Lyme disease specialist for the first time, thanks to the generous donations to my fundraising campaign on YouCaring.com--I sat in my specialist’s office and learned that I not only had late-stage Lyme disease (I was diagnosed in 2013) but the serious and difficult to treat co-infections Babesiosis and Bartonella.


I learned that these infections most likely contributed to the degenerative disc disease, arthritis, and nerve damage in my legs, back, and spine, the need for back surgery at the early age of 33, and the eventual failure of that first spinal fusion--and that my Lyme disease was now also endangering the success of my second back surgery.


I learned that I've had all of these infections since the age of 19; that they were the cause of the debilitating and chronic illness that followed me through my twenties into my thirties, an illness that has cost me friendships, romantic relationships, opportunities, jobs, and even my dream of going to medical school.


But I also knew that no doctor over the past 16 years of my struggle, despite my undeniable clinical symptoms--especially when her family members were exposed and infected, and taken together and appearing in such a young person who again had extensive exposure to deer ticks--thought to or agreed to treat me with a course of antibiotics simply because my test results for Lyme disease came back negative. To give you an idea, 30 to 50 percent of those infected with Lyme and other coinfections never test positive.. The many doctors I had seen, some of the best on the East Coast, had little to no accurate knowledge of Lyme disease and the other diseases ticks could transmit, nor how serious and even deadly they could be. In 2013, Joseph Elone, a 17-year old from Poughkeepsie, New York, died from an undiagnosed case of Lyme Disease in a little over two weeks after the infection spread to his heart. He is certainly not the first to die from Lyme Disease.


There were times I begged for antibiotics, demanded to be tested a 3rd, 4th, 5th time. I knew something was wrong with my body--and though there were periods through my twenties and thirties, whether due to a lack of health insurance or financial resources or both, my fight for my health lost some of its bravado--I never gave up. I’m still fighting.


So here I am, telling more of my story, and I'm thinking about Susan Sontag. "Illness is the night side of life, a more onerous citizenship," she writes. "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”


I'm also thinking about the spring of April 1999, a season of above-average temperatures for the northeastern United States. That's where my story, my initiation into "the kingdom of the sick," begins. That spring, sometime in March, was the last time I can remember what it was like to feel well: a light body, bones full of air, always moving, a belief in motion. That is the closest I can come to the feeling of being “well,” and it’s an intellectual abstraction at that. My body itself doesn’t remember. I have been in the kingdom of the sick, the "night side of life," for 15 years.


Well: pronounced /wel/, an adverb meaning in good health; free or recovered from illness; sound in body and mind; pleasing, or good. As in, Are you well? He is not a well man. All is well with us. From the Middle English and Old English wel, cognate with Dutch wel, German wohl, Old Norse vel, Gothic waila. Also the High German vel, or “fur,” and the Latin velum, or “veil.”


But also well, a noun: a shaft sunk into the ground to obtain water, oil, or gas; a plentiful source or supply. Archaic: a water spring or fountain. As in, She fell deep into the well.


When I realized I was unwell, I was in a backyard staring at a blooming wisteria, purple and vainglorious. I didn’t know, then, that wisteria is considered an invasive species in some places, especially in the southeastern United States. It pushes out native plant species, chokes them out. I learned that there is a Wisteria in Sierra Madre, California, an acre in size and weighing 250 tons--the epitome of proliferation, of spilling into. A kind of natural lust. Also sounding like lost, loss.


Sometime in that warm spring of 1999, a small black-legged tick commonly called the deer tick, Ixodes Scapularis--at whatever life-stage, nymph or adult--crawled out to the edges of the high grass in the Hudson Valley of New York, and then onto my body. I never felt the bite, I never found an engorged tick, I never developed the characteristic bull’s-eye rash.


In April of 1999, during finals week at NYU, I came down with flu-like symptoms, neck and joint pain. I shrugged it off as a spring cold due to the stress of sleepless nights studying and writing papers, and for a while my body fought off what I thought was just a typical virus. But with every exam booklet I finished, I became more and more exhausted. By the time I returned home to Orange County, New York in mid April, I knew something was wrong. And there I was, staring at the blooming wisteria, feeling like something had drained all the blood out of my body and seeing the world as if through a milky, distorted glass.


A month or two later, still on summer break, I started having more severe joint pain, stomach problems, migraine headaches, debilitating fatigue and exhaustion, and cognitive problems, and I asked my family doctor, who had known me since I was a child, to test me for Lyme disease. My results came back negative. He did something I would see so many doctors do over the years when confronted with my illness, something I will never forget--he threw his hands in the air and shrugged. He gave up. He passed my symptoms off as nothing. "You're a young woman,” he said. “You've just started college, you're probably just depressed."


By this time, the infection the tick transmitted was in my blood, and even as my immune system put up a defense the bacteria had disseminated into my muscle tissue, my heart, my joints, my brain, my spinal cord, and the entirety of my central nervous system. The spirochetes (the name given to the spiral-shaped Lyme bacteria, similar to Syphilis) dealing with an immune response, changed the proteins on their surface to avoid antibodies; they slid into hiding like shape-shifters, changing from their corkscrew spirochete form into the l-form and the cyst form (different forms of the Lyme bacteria that are harder to treat). Biofilms grew around them. They began to weaken my immune system and deregulate hormones. At that point, a short course of antibiotics wouldn’t have been be able to kill the disseminated, transformed bacteria. I had no idea, then, that in many ways it was already too late. That my "good passport" had been seized, perhaps forever.


In the world of science, Ixodes Scapularis, the most common tick that transmits Lyme disease, is a  type of parasite, a vector for an infectious disease feeding on white-footed mice, rodents, and the ubiquitous white-tailed deer of the US. At present, Lyme disease is the number one vector-borne disease in the country, and many other co-infections are now being transmitted along with Lyme--Bartonella, Erhlichiosis, Babesiosis, to name a few. Each year in the US, according the CDC, 300,000 people (a low estimate) are infected with Lyme disease. To give you some perspective, in 2013, 47,352 people in the US were diagnosed with HIV. Lyme disease is infecting six times the number of people in this country each year as HIV is. It's a staggering number.


Parasite: pronounced /par-uh-sahyt/; originating in 1530–40; from the Latin parasitus, from the Greek parásitos; a noun meaning one who eats at another's table, but originally an adjective meaning feeding beside; equivalent to para- + sît (os) grain, food + -os adjective suffix; an organism that lives on or in an organism of another species, known as the host, from the body of which it obtains nutriment. The scientific meaning "animal or plant that lives on others" is first recorded in 1646.


I learned that in Greek plays, the parasite had its own mask. As in: the parasitus or parasite lives only for himself. He is often seen begging for meals or being refused them. He lies for his own gain. He dresses in a long, black or gray garment with long, doubled sleeves.


I want so badly to hold that tiny tick in my hand, so small that I could easily crush it between two fingers. Such a small thing, so delicate, and yet the bacteria it carries can destroy lives. I never found it--it’s like a baby tooth swallowed in sleep, a tiny piece of tumor I will never see, a kidney stone. I look online at the images of borrelia burgdorferi spirochetes, spiraled eels, and try to imbue their microscopic image with the horrible disease they bring. It's not that what's happened to me, and what's still happening to me, doesn't feel real. Most of the time it feels so real, I want out of this skin, this body, so badly it's as if I'm buzzing all over with electricity.


I was not the first, nor the last, to be visited by the "Great Imitator," as scientists like to call Lyme. As a child in the early 1980s, I watched my brother come down with the same mysterious symptoms after we vacationed south of Cape Cod, Massachusetts, in the center of what scientists believe was the originating area of the Lyme outbreak, between the southern shores of Massachusetts, to Nantucket Island, to Lyme, Connecticut. My family and I, and tens of thousands of others, were in the middle of a perfect storm: Suburban homes and development had encroached further into the woodland habitat of deer, mice, and the other animals that were hosts to the Lyme bacterium for many years before it became a zoonotic disease, making the jump from an animal host to a human one--like Ebola, for example--and started to wreak havoc on a species that had never before encountered the disease. In addition to suburban development of woodland areas, temperatures had been growing warmer and extending the range of the deer tick and the seasonal window for transmission, while the larger predators that would have controlled the mouse population (foxes, for example) and the deer population (wolves and other larger predators) were gone. We had made sure of that through hunting and habitat destruction. We had gone into the woods, or very near, and what found us there would change us irrevocably.


It took years after my family first vacationed south of Cape Cod for my brother to be diagnosed with Lyme Disease. But it was only a matter of weeks after that trip that he became horribly ill. He was riddled with unexplained high fevers, juvenile arthritis, and migrating joint pain making him barely able to walk, along with nerve damage, brain lesions, seizures, and psychological changes. He was never the same. It was 1984. He was 8 years old.


By the end of the summer of 1999, I too was severely ill. Back at school, I went to the NYU Student Health Center and asked to be tested for Lyme disease. I thought I would for sure receive better, more advanced care there. But over many long months of suffering, multiple Lyme tests came back negative. The diagnosis of Lyme was tossed to the wayside and never discussed again, and I was bounced from specialist to specialist, even to a psychiatrist for a psychiatric evaluation, with no resolution. I was scoffed at again and again for suggesting that maybe, despite test results, I really did have Lyme--or otherwise something else. I couldn’t be that sick with no known cause--but no one could tell me what was wrong with me: primary care physicians, neurologists, psychiatrists, gastroenterologists, endocrinologists, et al. Again came the shrugs and the same statements I had heard earlier, word for word: “We can’t find anything wrong with you. You’re a young lady, you’ve just started college, you’re probably just depressed.” Again, I was a woman. Again, I was just depressed. Somehow my gender was a terribly important symptom in my so-called non-illness, as if being female increased the odds that I was making much ado about nothing, or that I was more mentally unstable. By this point, I was enraged. I called my family physician and the NYU health center and demanded copies of my medical records. I started poring through them as if there was some missing person. And there was one. It was me. I was 19 years old.


I didn’t know, back then, that the tests my doctors had ordered--the only tests covered and endorsed by insurance companies to this day--were unreliable, that upwards of 30 to 50 percent of people receive false negatives. I didn’t know that Lyme disease, for the most part, is a clinical diagnosis, not only because of the ever-continuing unreliability of the tests covered by insurance, but with any test, Lyme Disease is a slippery eel. The Lyme bacteria cloaks itself, changes forms, hides from the immune system, and suppresses immune response. Any blood test looking for a specific immune response or antibodies to Lyme disease can, without a doubt, come back negative even if someone is infected. Not everyone develops a bulls-eye rash, or any rash at all. I didn’t know just how uninformed doctors were to the seriousness of Lyme disease, the importance of early treatment, and how widespread it was. When they told me I didn’t have Lyme disease, I made one of the biggest mistakes of my life--I believed them.


I suffered for 14 years before a wonderful doctor thought to retest me. I was haunted by the negative Lyme test results of my past and still chronically ill--my condition worsening after my first spinal surgery in 2013 to the point where I suffered a total physical collapse. Rather than rely on the typical ELISA test, he ordered further tests as well, like the Western Blot. And rather than simply rely on the CDC and IDSA’s criteria for infection based only on those tests, he considered my frequent exposure to ticks in the lower Hudson Valley in New York (an area with some of the highest rates of Lyme infection in the country), my entire medical history, and my debilitating symptoms, and decided that my results--a positive ELISA and a few bands on the Western Blot--indicated a late-stage Lyme infection. He had seen so many patients from Sontag’s " night side of life," and he truly saw me, along with the disease that had been derailing my life, as I sat in his office, slumped in a chair and barely able to hold up my head. By then I could barely eat or get out of bed. I couldn’t take showers. I couldn’t make it to work. My body was filled with lead and my head stuffed with cotton. I had fallen deep into the well. He started to pull me out of it.


By January of 2014, after three months of oral antibiotics had failed to make any headway with my Lyme infection, a PICC line, or catheter, was inserted into my upper arm and threaded through a vein into a large vessel above my heart. I would spend the next eight months with the PICC line in, undergoing, on and off (because of insurance denials), daily IV infusions of Rocephin, a powerful antibiotic used for advanced cases of neurological Lyme diseases. My insurance company, after the first month of treatment, pulled the plug and stopped paying for the drug, for the supplies to care for my PICC line, and for the weekly nursing care I also required, stating that one month of treatment was all that was necessary for Lyme disease. It didn’t matter to them that my doctor had prescribed a minimum of three months of continuous treatment and that any interruption in that treatment would allow the Lyme bacteria to survive. It didn’t matter that scientists, researchers, and major organizations such as ILADS (International Lyme and Associated Disease Society), among others, strongly recommended that Lyme treatment entail long-term antibiotic therapy. In fact, Connecticut, Rhode Island, and Massachusetts are among the handful of Northeastern states who have now put laws in the books requiring insurance companies to pay for long-term antibiotic treatment in Lyme patients. It also didn’t matter that stopping the care of my PICC line endangered my life; that I could have suffered a deadly blood clot or infection if my line was not flushed and cleaned daily. Each day I thought of the catheter threaded up into a vessel above my heart, as if I could feel it; I wondered if or when I might suffer sepsis, that cascading, blood-borne infection that can develop from an IV line and drop organ systems like dominos as they fail, one by one. Kidneys, liver, lungs, heart.


I appealed the insurance denials not once, not twice, but three times. The process and the paperwork were insanely confusing and misleading. No one at Oxford would give me any information regarding the process. I was told that the appeals department did not even have a phone number to call, but only a fax line to receive appeal paperwork. I requested a Complex Case Manager, a person listed on their website who helped insured members manage and coordinate care for themselves when they were afflicted with chronic or complex illnesses. I called Oxford five times over the course of a week to request this assistance, and each time I was told that Complex Case Managers did not exist. It wasn’t until the fifth call, when my boyfriend at the time took the phone from me, as I had just crumpled to the floor sobbing, and demanded I be given a case manager for my situation, that something changed. Whatever he did worked: I received a call from my new Complex Case Manager the next day. Unfortunately, she would end up providing a plethora of incorrect information regarding my coverage and appeals. But at least I was vindicated by her existence.


In the meantime, they suggested that I visit the Emergency Room every day to flush my line and receive nursing care to maintain the PICC line, even though I could barely get out of bed. What didn’t make any sense was that the monthly cost of my treatment was around $1,200--while a single emergency room visit was far over the $1,200 price tag of my monthly Lyme treatment. How was it in their best interest, and mine, for them to pay $36,000 for 30 days of ER visits when they simply could have approved my monthly IV treatment for 1/30th of the cost?


Finally, after months of appeals and months without antibiotics as my Lyme infection grew worse, I took my appeal outside of Oxford to the New York State Department of Financial Services. If you’ve exhausted a certain number of appeals within your health insurance company, you’re entitled to a review of those appeals by this department, who can order your insurance to pay for your previously denied care.


Two days after I filed my expedited application with the New York State Department of Financial Services--an expedited application because of my worsening condition and the risk to my life from my neglected PICC line--I received news that I had won my external appeal. Oxford was ordered to provide me with my prescribed treatment and nursing care immediately. I remember dropping to my knees when I received that phone call. I felt like I had a won a war.


Unfortunately, only weeks after I won my appeal, I was let go from my job because of my illness and inability to work. In losing my job, I also lost my health insurance, and in losing my health insurance, I also lost my Lyme disease treatment.


Having had to knock at Oxford’s door again and again while I was so severely ill, to go through appeal after appeal with denials, misleading information, and confusing paperwork slipped under their battering ram-proof door, I kept being turned away. I was a subject of the king requesting an audience on deaf ears. I was no one. I was that missing person. I think of insurance companies now, too, as wearing a mask. They, too, carry their own deadly pathogens. They too had become parasites, those who lie for his or her own gain, who dress in a long, black or gray garment with long, doubled sleeves.


TO BE CONTINUED

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