Lindsay's Lyme Treatment
Organized by: Lindsay D
November 2016 Update
November 17, 2016
Hi there, my name is Lindsay. I've endured many challenges since I was first diagnosed with Lyme Disease in 2008. Here I am, 8 years later & reaching out to ask for your support feels like the hardest pill to swallow yet. I've never been good at asking for help -- or more accurately, admitting to myself that I need it -- but here goes…
My story is rather long, but certainly not unique -- there are millions in the US alone affected by Lyme Disease & other tick-borne illnesses. I'll try to keep this concise, but honestly I’m pretty terrible at getting to the point. So if you want to cut to the chase & see exactly what my financial challenges are at this time, please skip down to How Your Support Will Help Me -- I promise I won’t be offended. :)
I was working as an environmental scientist for the Delaware State Parks -- my first "real job" post college. I absolutely loved it! I worked outdoors year round controlling invasive plants species, & managing deer & geese populations. It was so rewarding & I couldn’t have imagined a better place or better people with which to spend my days.
Early one morning in May I woke to the most searing & horrendous pain I'd ever experienced to that time! My body was locked up in the fetal position & I couldn't move. I had a fever & chills but this wasn’t the flu. I had tremendous pain in my back, neck & head. It may sound odd, but instinctively I felt it was Lyme Disease – the State of Delaware had trained us well to know the signs & symptoms. During my time with the State Parks, we were required to keep tick journals documenting any bites & I had removed about a dozen or so ticks in the previous year.
I managed to roll myself onto the floor to make it to the phone. I called my doctor & requested to be put on antibiotics straight away. I was quickly started on doxycycline but within a few days new symptoms were popping up left & right. My knees were red hot, swollen & achy. I was hardly able walk or stand. I was 24 years old & in excellent shape from the all the strenuous field hours I put in -- not to mention evenings at the gym & a lifelong love of soccer. I felt like I had been transplanted into a stranger’s body! It was a frightening place to be but I had faith that it was a temporary situation.
At that time, a 28-day cycle of doxycycline was known to "cure" the infection per the Centers for Disease Control (CDC). The next few weeks were a blur. My labs came back & I was told by the DE Division of Public Health (where all state cases of infectious disease must be reported) that they had never seen an antibody titer as high as mine at over 4x the required range for a positive Lyme test.
I was still in excruciating pain & severely fatigued. I developed a classic bulls-eye rash & Bell’s Palsy which paralyzed the left side of my face for a couple of weeks. I never knew how much I took for granted until then -- the ability to see, blink, chew, swallow, talk & smile. You just never know, until you KNOW.
Thankfully within a few weeks of taking doxycycline I was considerably better. Many symptoms persisted after the treatment was over, but I was told my condition would continue to improve with time & to stop taking antibiotics.
At this same time, I was awaiting my country assignment for the Peace Corps. I had applied over a year prior & couldn’t wait to start my service as a United States Peace Corps Volunteer. It had been a dream of mine to serve in the USPC for as long as I can remember! In July of that year, I left for a 27-month assignment to rural Jamaica.
Unfortunately due to my symptoms recurring & the lack of adequate health care -- there are no ticks & no Lyme Disease in Jamaica -- I was medically separated within a year of being in country. It broke my heart into bits! I loved my service & my Jamaican community. I felt like I was being forced to quit on them & the commitment I had made to myself. I had sworn an oath to my country that I was no longer allowed to fulfill. But I came back stateside hoping to resolve my health issues & reinstate my service.
It was then that I first heard of & was diagnosed with Post Treatment Lyme Disease Syndrome (PTLDS). I was told I may have to live with these symptoms for months but that they should eventually resolve.
PTLDS is a syndrome coined by the CDC to explain away persistent symptoms of relapsing or chronic Lyme Disease. The CDC admits that their guidelines for Lyme treatment are not effective for all patients -- at least 25% suffer beyond initial treatment & I was one of them. Doctors are advised to treat their patients suffering from this "new syndrome" symptomatically. I was told I may have to live with my symptoms (ongoing pain, exhaustion, insomnia, & increasingly obvious cognitive decline) for months, but that they would eventually resolve.
It's terribly ironic that the CDC states chronic Lyme infection does not exist, yet I was now being treated for symptoms of chronic Lyme Disease after the CDC's treatment protocol failed. I was an insurance company's dream as they had little to no responsibility to cover costs for a disease that "does not exist". Of course at this time, I was seen by many specialists & paid many bills out of pocket -- not easy to do considering I had just spent a year overseas, serving my country & host nation as a federal volunteer.
I wasn't particularly interested in a treatment plan that would only manage my symptoms -- or more accurately the drugs that come along with this approach -- the painkillers, the sleeping pills, the secondary meds you're prescribed to counter the side effects of the primary meds. But I continued to go to doctor appointments & play guinea pig in good faith because I really wanted to get better & get back to work! Albeit I was very skeptical & stubborn at times, as I didn't want to put my failing health at more of a risk with this shotgun approach.
Truthfully, I was ready to just muscle on & get back to my overseas service - since these persistent symptoms would only last another few months anyways according to the CDC. I was (& honestly still am) stubborn to a fault. I wasn't willing to quit on my service & my community - which by that time had become my second family, my identity & my purpose. But no doctor would sign off on the paperwork & so my dreams of completing my Peace Corps service were over. I was absolutely devastated.
With time I began to pick up the pieces & rebuild my life stateside but many months later my health issues still lingered. In January of 2010, I had a PICC line inserted into my arm (a semi-permanent IV of sorts) & was put on IV antibiotics for a month. Even though the treatment was hard to adjust to (its more difficult than I imagined to have only one good arm) & came with its own set of side effects, I liked this approach. Finally we were treating the cause & not just the symptoms. It took a ton of fight & effort to get to that point & find a doctor willing to treat the Lyme infection again. One month was all the doctor was legally allowed to prescribe per the CDC's guidelines, but thankfully I improved modestly in the short-term & decided it was time to get on with my life.
I moved to New York City in 2010 to pursue a masters in engineering & did reasonably well considering my health struggles. But during that time I began picking up new diagnoses -- anemia, arthritis, fibromyalgia, neuropathy & optic nerve damage to name a few. It would be fair to say I was simultaneously earning a masters in masking my health problems & adapting to my ever evolving physical state. I managed to graduate & begin work in my field as an environmental engineer in but my health issues continued.
My situation got dramatically worse in 2015. I had been taking as much sick time from work as possible. For months, I was only able to sleep for 3 or 4 hours at night because my heart seemed to be working really hard. My doctors told me it was anxiety but I wasn’t anxious -- except about my health issues. My joint, muscle & headache pain was flaring ALL the time. Rather than my usual cycle of a few bad weeks every couple of months -- it had became CONSTANT. My supervisors at work had noticed a dip in my performance -- to the extent that I lost my promotion. I could no longer function well enough physically or cognitively to fulfill my job requirements like I once had & so I was quietly going into the office on the weekends to catch up. I did my best to hide the situation from coworkers but eventually it was very obvious that something was wrong.
One day in May 2015 while leaving an appointment in midtown Manhattan, I suddenly got very disoriented. I couldn’t feel my arms or legs. My hearing went & I got tunnel vision. My head felt like it was a balloon floating far away from my body. Although I knew exactly where I was & how I got there, I had no idea how to get myself back home. I stumbled around sidewalks & intersections trying to find someone to help me. Thankfully a police officer saw me & got me into a cab home (I thank God for that man!). However, my symptoms did not improve & I ended up in the hospital.
Within a week, I had seen 3 new neurologists & my rheumatologist who told me that my routine blood work from several weeks prior showed positive once again for Lyme Disease. I had suffered a relapse & by far my worst one yet.
I was soon diagnosed with a form of Dysautonomia -- or Autonomic Nervous System Dysfunction -- called Postural Orthostatic Tachycardia Syndrome (POTS). This helped to explain why I was having such a hard time cognitively & cardiologically for the past few months. My Lyme Disease had attacked my nervous system yet again & thrown it into a tailspin.
In essence, many POTS patients have chronically low blood pressure & as a result blood does not get to the brain or extremities. We discovered that I have low blood volume as I wasn’t creating enough plasma to bulk up my blood supply. My heart had to work extremely hard to pump a diminished blood supply around my body & keep my blood pressure up hence the constant palpitations I felt at night.
POTS (not to mention Lyme Disease) is an exhausting condition. It was very difficult to be on my feet at all. I had severe fatigue & weakness in addition to pain & cognitive deficits, so at this that I had to stop working. I was bedridden & could no longer do even routine tasks like grocery shop, cook or laundry -- let alone travel to work & manage subways, busses & the hectic pace of NYC life & work.
Last summer was spent finding numerous specialists to treat my many health problems. Suddenly I had multiple neurologists, a cardiologist, a rheumatologist, a naturopath, & finally a Lyme Literate Medical Doctor (LLMD). I was also going to weekly acupuncture & physical therapy sessions to manage my pain.
My LLMD believes that when I was first infected with Lyme Disease I was also infected with another tick-borne co-infection -- Babesia -- a malaria-like parasite that attacks the red blood cells. Babesia is known to be difficult to treat & in my case had been left untreated for over 7 years. When I was first placed on drugs to treat the Babesiosis, I began to have stroke-like episodes where I could not talk, swallow or move at all. I'll never forget the first time I lost my speech -- I was on the phone with my parents (they were hours away in DE & I was alone in my apartment). I just suddenly couldn't make any words. These strange noises came out of me but made no sense. I didn't know what to do. I didn't want to scare them by not sounding like myself. I quickly hung up the phone & just tried to hang on. It was incredibly frightening & of course I wasn't able to continue to with the treatment.
Throughout the fall & winter, I went to countless doctor appointments & tried many different treatment protocols, but due to side effects & my weakened state I could not tolerate any of them. My condition worsened -- I was in & out of the hospital & urgent care.
In December 2015, just a few days before the Christmas holiday, I got some very unfortunate news from my company. I would no longer be covered under their health insurance starting January 1st -- just days away. So at that time I began paying $800/month in COBRA premiums. Although this was awful news & cruel timing, it was not unjust. My company is a business afterall & I don’t fault them for the decision they were entitled to make. People have told me how mad & resentful they would be, but I've found those emotions counterproductive to my healing, my heart & my own peace of mind. Moving on...
In January of this year after 6+ months of failing numerous treatment regimens, my LLMD decided to put me back on IV antibiotics like those I took in 2010. This meant once again having a PICC line surgically inserted into my arm. The aggressive nature of the treatment, coupled with my failing health & the inability to use one arm forced me to undergo this treatment in Delaware while staying with my parents. There was no way I could continue to live alone in NYC, pay rent with no income & get better. My savings were long gone. I had to admit that it wasn't helpful to myself or my family -- that was frequently traveling from out of state into the city -- to continue on that path.
With time I became stronger, although not well enough to get back to work. Almost a year later & I am finally able to have a few productive hours in my day. I’m very thankful the IV antibiotics helped me turn the corner, but this comes at a large price.
After only 4 weeks of IV medication, my insurance denied any further treatment stating once again that Lyme Disease is only an acute infection & does not requirement long-term treatment. As I hinted at above, there is A LOT of disagreement in the medical community concerning this topic & it has become a highly politicized issue that I won’t go into further here. It certainly has come at the expense of the health of hundreds of thousands of Lyme patients.
How Your Support Will Help Me
I have been out of work on medical leave since May 2015. I can hardly believe I am closing in on a year already. Inevitably I get teary-eyed & a lump forms in my throat when friends ask cheerfully -- “You seem to be doing better! When do you think you can go back to work?” Then I choke out, “I really hope sooner than later!” because I REALLY do. Being forced to leave my job is THE single greatest thing my illness has taken from me -- besides my health of course. It is more than a job or a paycheck. It is my purpose, a huge part of my identity. So the question of returning to work is a BIG question but unfortunately I have no answer & my doctors certainly don’t either.
So it's a rather impossible predicament I currently find myself in healthwise & financially. I cannot get back to work until I am healthy & I cannot afford to get healthy if I cannot get back to work. This is the third time in 8 years that my career has been substantially interrupted & since last May between out of pocket costs & lost wages, I have spent WELL over 6 figures.
In order to continue my positive progress with IV antibiotics, I will have to pay out of pocket approximately $500/week. I continue to pay $800/month for medical coverage until I am able to work full-time again. Those two items alone are close to $3,000/month. My other medications, supplements & out of pocket doctor appointments are approximately $2,000/month.
My hope is that within 3 months I will be much closer to a full recovery, off IV medication & able to return to work. My fundraising goal of $15,000 matches that hope. I am so grateful for all the support I’ve received over the years. Any little bit would help me get past the next few months & on my way to a full recovery.
Thank you so much for taking the time to read this & for your heartfelt consideration. I am truly grateful. I believe no prayer goes unheard, no positive vibes go unfelt & I can assure you no amount of generosity would go to waste.
Many, many thanks from the bottom of my heart!
Ps - Feel free to check out the following non-profit organizations which I truly believe in. If the day ever comes that your donations exceed my medical costs, I will pay every last penny forward to these groups which help others like myself who are so in need.
International Lyme & Associated Disease Society
Team Red, White & Blue