Tracy's Story

Since January 2021, my friend and co-worker Tracy has been dealing with serious and ongoing health issues. She has written out her health journey in more detail below, which is long and complex! Through all of this, almost none of her healthcare has been covered by insurance, and her homeowner's insurance covered nothing for the remediation of her house. I watch her every day as she faces all of her symptoms, ill health, unknown and multiple diagnoses, and a huge financial burden and debt with courage, optimism, and grace. I asked Tracy and Jason if I could create this GoFundMe for them, knowing they are pretty much at the end of their rope.

Whether you can assist financially or not, I strongly encourage you to read through her story. Knowing and caring about each other’s stories helps us to be seen, heard, and held. It’s one of the best ways we can support one another through the garbage that Life throws our way. Feel free to give Tracy, her husband Jason, or son Sawyer a big hug the next time you see them!

~~~~

Thank you for taking the time to read my story. This is super hard for me to share, but I’ve learned suffering in silence isn’t serving me or my family anymore. As many of you know, I’ve been on a pretty crazy health journey for the last 2.5 years. So many ups and downs, punches in the face, moments of hope, confusion, sadness, skepticism, anger, gratitude, and complete despair.

My health tanked when I got Covid in early 2021. What seemed at the beginning to be similar to a bad hangover turned into a pretty serious situation. I ended up in the ER because I couldn’t breathe, and it felt like my heart would explode. They ran all sorts of tests and said, “You’ve got anxiety because you have Covid. Go home, and you will be fine.” A few days later, not feeling any better, I went back in. They did more tests and again said, “You’ve got anxiety; take these meds and relax.” Then, a few days later, we got a call informing us that they missed pneumonia in my lungs on the chest X-rays. OOPS! I was pretty pissed, but at least I had some answers about why I was still so sick and just kept getting worse. I had to wear a heart monitor because my heart would race out of control even when I was resting. It was all really scary. I kept wondering why the hell I got so sick with Covid. My health, diet, conditioning, etc., were all good prior to this. Little did I know, this was just the beginning.

After eight weeks or so, I started to bounce back and literally jumped back into life like normal. I started exercising again and even tried skating a few times, I was pretty determined to just get back to it despite still not feeling 100%. Unfortunately, my symptoms started to come back; my legs felt like sandbags, and I was constantly exhausted. Then one day, I literally couldn’t get out of bed. I was hit with the most intense fatigue I’ve ever experienced. My entire body was so heavy I could barely lift a coffee cup, my brain was utterly foggy and empty, and my heart started doing crazy things again. Then new symptoms emerged: electric shocks down my spine, super intense burning down my legs, swollen lymph nodes, twitching and crawling on my face and inside my ears, and the top of my brain felt like it was on fire…To this day, I’m still coping with all of these symptoms on a daily basis.

I tried a few doctors, none of which had any idea of what was happening. One Infectious Disease specialist said, “There is no way this is Long Covid. Those people just stay sick. You started to improve; you must have some other virus.” Another dead end, another doctor without a clue. I kept searching for answers. After what felt like a million tests and a million doctors, I ended up at the Tick-Borne Illness Center in Northern Wisconsin. I was clinically diagnosed with Late Stage Neurological Lyme Disease and also with coinfections Babesia and Bartonella. When caught early, Lyme Disease can be quite treatable. When it’s not, most end up chronically debilitated by the disease, and it’s incredibly difficult to treat - which I have experienced firsthand. Tragically, this is a silent epidemic affecting millions of people every year.

During the diagnosis exam, I had terrible tremors; my head and eyes couldn’t focus and were bouncing all over the place. I was prescribed three different antibiotics, herbal remedies, and several different detoxing methods. Some of it seemed legit, and some of it seemed crazy. At first, the antibiotics cleared my brain, and it seemed like I was on the right track, but after about a year of antibiotics, my body just couldn’t take it anymore, and I needed to try something new. A friend told me about a doctor who helped many people with Lyme, so I shifted gears and tried his IV therapies. For three months, I drove to WI Dells twice a week to try his IV protocols, but unfortunately, they made my brain fog, creepy crawlies on my face, and body pain so much worse.

I plateaued again and decided to switch doctors. I found a Functional Medicine doctor in Green Bay specializing in Lyme treatment. I learned quickly that many people who suffer from Lyme Disease often are exposed to mold in their homes. Toxic Mold suppresses the immune system, allowing Lyme bacteria to flourish. I thought she was crazy, assuming we didn’t have any mold in our house, but I followed her advice and had our house tested. The results came back, and it was BAD. Like, crazy bad. I was so confused; where the hell was the mold?? Our house was in great shape and had no issues, or so I thought. We hired an inspector who didn’t find anything but mentioned the possibility of mold in our crawlspace under the newest addition of our house. After investigating that possibility ourselves, we found the MOTHERLOAD of mold. The crawlspace wasn’t encapsulated, and the entire dirt floor was covered in a crust of mold. It was growing up the walls and into our insulation. It was closed up so tight for the last 20 years that the smell was horrific. We were in shock; we had been breathing this in for the last six years and had no idea our house was trying to kill us.

We tested my body for mycotoxins and found out I was full of five different toxic molds, including Ochratoxin A, which causes many brain issues and my doctor says is the most deadly. Around the same time, I learned that I have a gene that doesn’t detox mold properly, and I was diagnosed with Chronic Inflammatory Response Syndrome (CIRS). As I put all these pieces together with my doctor, I realized that right after we moved into our house, Sawyer started getting bloody noses, and his tonsils blew up and had to be removed. We tested him, too, and found his body was also full of mycotoxins - which was devastating news for a parent. It was time to get out of our toxic house. Luckily, we found a small, local Airbnb to move into for four months while we remediated our home. Paying our mortgage and rent was financially challenging, and our expenses continued to pile up overall, given the medical bills (the overwhelming majority not covered by insurance) and all that went into testing, evaluating, and remediating our home.

When your house is contaminated with mold, it is very similar to a house fire; everything in it is contaminated. The mycotoxins are in the air and get blown all over your house by your HVAC and settle on the dust in your home, and you breathe it in. Unfortunately, not many people are aware of this and could be or may become chronically ill because their homes are keeping them sick. To do the remediation for our house, we hired a company out of Chicago that specialized in mold remediation for those with chronic inflammatory conditions. First, we had to remove every item from our home except a few large furniture items that were deemed cleanable. Everything porous had to be thrown away, including our mattresses, furniture, plants, vacuum, toys, books, paper products, pillows, rugs, curtains, coats, and stuffed animals. We ended up getting rid of about 75% of our belongings.

When the remediation company did a full inspection of our house, they found SO MUCH MORE MOLD!!!! Our upstairs bathroom had to be completely gutted (where they found asbestos as well, so we had to hire a separate team to remove it). Our downstairs bathroom's toilet flange failed and was slowly leaking under the floor for a while, so the floor, vanity, and toilet had to be removed (as timing would have it, we had recently remodeled this bathroom). A few other walls had issues where water damage was found. Our backdoor jam leaked into the carpet, so the wall and part of the floor were also removed because there was mold there, too. To access the crawlspace of our house, they had to remove the carpet and cut a giant hole in our floor. The back of our house had to be re-sloped, the stone patio had to be torn out, and the stairs on our deck relocated. Our basement paneling had to be completely gutted and all studs removed. The remediation crew filled a 30-yard dumpster in one day!

With our house completely torn apart, we deemed it safe enough to move back in. This was a very stressful situation. We didn’t have a shower for the first two months, and our garage was packed full of items we were trying to preserve but needed to be decontaminated. It took us countless hours to clean everything; we had to hand wipe each item following a specific safety protocol three times before we could bring them back into our house to prevent cross-contamination. It’s taken us five months to get our home into a livable condition, and we still have a ways to go.

The financial impact of this has been challenging, to say the least. The mold remediation cost $50,000, and we’ve spent another $50,000 on repairing and rebuilding our home and replacing all the items we had to throw away. Unfortunately, our homeowner’s insurance covered NONE of the remediation costs.

I wish this were the end of my story; we remediated our house, my brain fog disappeared, and I returned to normal. Unfortunately, that is not the case, and I’m still in the same state. My doctor told me that I should start to feel better three months after being out of a mold-contaminated environment, but I was still experiencing significant brain dysfunction nine months later. Through further work with my doctor, we looked into my history of potential brain injuries. At one point, she asked, “Have you ever had any concussions?” I actually laughed a little and said, “Um, yeah….quite a few actually.” I shared with her the most intense concussion I had about 12 years prior while playing coed hockey in Mankato, where a giant dude accidentally hit me pretty hard. I was taken off of my feet, landed on the back of my head, and was knocked unconscious. It was severe enough that I had to be carried off the ice. Once I came to, it felt like I had been in a car accident, and that feeling lasted for days. I didn’t have health insurance then, so did nothing about it. Until now, I never connected the dots to all of the health problems that followed, such as experiencing terrible migraines off and on for years, including the ocular ones that feel like you are looking through a kaleidoscope, and the only relief is to lie in bed with the lights off.

After hearing the news, my doctor recommended I see a Functional Neurologist in the Twin Cities who had a stellar reputation for helping people with Brain Injuries. I called right away and was able to get into the Functional Neurology Center the following week for a complete Brain Exam. My appointment at The FNC was eye-opening, and I’m actually still processing everything I learned. While I was there, they did all sorts of tests, including balance, eye movements, and coordination. During one test, I wore goggles that recorded all of my eye movements during various exercises. For someone without a brain injury, their eyes will remain still during the exercises; however, my eyes jumped up and down in a pulsating fashion. When they replayed the video of my eye movements, I couldn’t believe how bad it was. In one of the exercises, I was supposed to follow the dot up and down with my eyes. This was really hard for me to do; my head tremored as I tried to follow the dot. Instead of going up and down as they should, my eyes veered off sideways, indicating my eyes weren’t tracking as they should. I also failed the balance test miserably, scoring approximately at 1%. When my eyes were open on the balance board, my brain could track where I was in space and I could stand still. When I closed my eyes, my body started flailing all over the place out of my control, and I actually flew off the board and hit the wall. The doctor explained that my brain has been working in overdrive to try to figure out where I am in space and that my brain literally thinks I am doing somersaults all day long.

Overall, the tests indicated that I have pretty severe brain damage from previous Traumatic Brain Injuries (TBI), specifically the brain stem and vestibular system. It was likely reinjured when I got Covid; my doctor explained they are seeing a high volume of people with Long Covid who develop a Chemical concussion to the brain. Luckily, my frontal lobe is working well, which explains why I’ve still been able to function as well as I have. I also found out that because of Covid/Lyme/Mold/Brain Injury (unknown which is the specific culprit), I’ve developed Dysautonomia. Dysautonomia is dysfunction of the nerves that regulate involuntary body functions such as heart rate, blood pressure, and sweating. Essentially, my brain’s wires are damaged and not signaling my body correctly, and I’ve not been getting enough oxygen to my brain. This was a lot of heavy information to process, but it resonated with everything I had been experiencing. I haven’t been sweating properly for years; my brain is a burny, foggy mess, and my heart is always racing. This could also explain why my hormones, thyroid, and adrenals aren’t functioning correctly either.

But there is hope! The Neurologist suggested I return to the FNC to do a week-long intensive Brain Rehabilitation Program where they will try all sorts of different therapies and exercises, including Hyperbaric Oxygen (HBOT), GyroStim Chair, and Tilt Table Therapy. He said this might not fix everything, but to heal, I need to start with the foundation of my brain and then focus on the rest. I’m really excited and nervous, and I really hope to see significant improvements by the end of the week. Send your positive thoughts and vibes my way, I could really use it! The cost of the week-long intensive is $6000, plus a week-long hotel stay, food, gas, etc. I’ll find out what the plan is moving forward; it sounds like I have a long road ahead of at-home rehab and ongoing HBOT treatments to get my brain back to a healthy state again.

If you’ve made it this far reading my story, thank you! It feels very therapeutic, but the vulnerability of “airing it all out” is hard. When you look “normal” and struggle with invisible illness, it's easy to feel misunderstood, and it doesn’t help when you have doctors tell you it's “all in your head.” The funny thing is, it turns out it really was all in my head after all.

Overall, we’ve spent roughly $130,000 in the last two years navigating my illness, with more inevitably to come. If you see my wonderful husband, Jason, please give him a hug or a high-five for me. He’s been my rock, supporting me through this journey, and I am so thankful to have him standing by my side. And a big thank you to everyone who has helped our family; we appreciate YOU!!! THANK YOU for all of your support, helping us put our house back together, watching my kiddo, and countless hours of listening to me while I tell this difficult story.