‘You just picked up a virus.’ I was dizzy every second of the day and felt excruciating pain. Why wasn’t this going away?’: Woman advocates for Chronic Lyme Disease, ‘We’re in this together’

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“In 2015, I started having pretty severe stomach issues. I couldn’t eat, and I was always throwing up. I went to a gastroenterologist to see what was wrong. I had blood work done and an endoscopy performed to check out what was going on with my body. The only thing my doctor could tell me was I had Irritable Bowel Syndrome (IBS). I started taking omeprazole every day, and it didn’t really help so that stopped very quickly. I’m a believer in not taking medicine, to begin with, so if it’s not working, what’s the point?

In 2016, I was very active in bodybuilding, and started some very intense workouts. I began getting really dizzy, and passing out, and was having heart palpitations. I saw a cardiologist and wore a halter monitor for 24 hours. He said, ‘Everything is fine, there was just a slight arrhythmia. No need for any more tests.’ I was still passing out and getting dizzy, but that was just due to dehydration and lack of food, or so they told me.

Courtesy of Danielle Cosgrove

In 2017, everything was pretty normal. I still had those couple of issues but, nothing new. In May of 2017, I had a big setback. I was having strange abdominal pain and thought maybe it was just food poisoning. I went to bed and thought nothing more of it. The next day, I went to a doctor’s appointment and had a hair appointment as well. I was feeling fine up until the middle of the hair appointment when I started to feel woozy. My stomach hurt so bad my hairstylist could tell something was wrong. I felt a pit in my stomach. Not even a pain, it was a weird feeling I still cannot explain. She went across to the wellness center and grabbed me a ginger ale, which helped a little bit. Then the pain started. A sharp pain right above my belly button that would not go away. I went home and it went away, and then came back in full force on the right side. I tried to sleep it off with a nap. But I couldn’t.

I went to urgent care and they said, ‘It might be appendicitis, get to the ER right away for a CT scan.’ The ER was ready for me, as the urgent care doctor called ahead to let them know I was coming in. They gave me an IV and morphine right away because of how much pain I was in. After that, it was all pretty much a blur. But I do remember being taken for the CT scan and when they told me I was going to need surgery to remove my appendix. A few hours later they gave me a sedative, and I was on my way to the operating room. After the surgery, I was able to go home. Since I was able to walk, they didn’t need to monitor me. Recovering was difficult because every time I would stand up, I was in pain. Luckily, I healed quickly. I still had a ton of problems after this, though. My abdomen hurts every now and then. 2017 was also a year I kept getting strep throat. It was at least once a month. I didn’t know why I kept getting it, so my friend suggested I see an Ear, Nose, and Throat doctor (ENT) to talk about possible tonsil removal.

Courtesy of Danielle Cosgrove

The ENT wanted to do a bunch of tests, and have me see his Allergist/Immunologist he works with before we talked about that. This is when I got the news I had an Immune Deficiency. I had Selective IgM deficiency. This is a rare immune disorder in which a person has no immunoglobulin M (IgM) antibodies, or too little IgM, with normal levels of IgG and IgA antibodies. IgM is the first antibody the immune system makes to fight a new infection. I believe now it is secondary to Lyme Disease. Due to having a deficiency of IgM, of course my bloodwork is going to be negative for Lyme Disease! It all makes sense now, but back then, I had NO idea. I started to get allergy shots in hopes of making my immune system react better. I stopped getting strep, but my immune system is still not where it should be. I no longer got the allergy shots because they weren’t making me any better, and there was still something very wrong.

Courtesy of Danielle Cosgrove

2018 came around and I moved to Florida to pursue my dreams of becoming a Disney Princess (Disney College Program). Spoiler alert: it didn’t happen! When I first arrived, everything was pretty good until I started getting dizzy and nauseous every day, and passed out multiple times, one time even on stage in front of guests! I kept going to urgent care and they kept sending me home with Zofran for nausea and Diazepam for the dizziness. Each times it was just another ‘virus’ I had picked up ‘probably from working with children.’ I had enough of all of it, and my dreams ended early as I left the program. When I moved back to New York, things started to go alright again, but I saw my physician to try and get to the bottom of this. Yet again, it was a ‘bug.’ More Zofran and Diazepam. I got Naproxen to help with my headaches that radiated down my neck. These would soon turn into debilitating migraines that lasted for hours. I could barely move. I tried to soldier on, and not let it affect me.

Towards the end of 2018, I was working as a waitress and I loved it. One day, I was walking to the back of the restaurant with dirty dishes to put in the sink to be cleaned. I took a step with my right foot and I had excruciating pain. I didn’t hear or feel a pop. It was just when I took a step, the middle of my foot radiated a sharp pain that made me cry. I worked on it for the rest of the night, and saw my podiatrist the next day. He did some x-rays and didn’t see anything. Ordered me to get some MRIs on both of my feet. When I went in for the follow up and MRI overlook, there was a boot sitting in the room waiting for me. I was praying for it to not be for me, but it was. I had a bone marrow edema and cartilage loss in BOTH of my feet in my Lisfranc Joint (where the metatarsals meet the cuneiforms) likely from arthritis. In my left foot, funny enough the foot that didn’t hurt, I had a full-thickness peroneus brevis (right below the ankle) tear. I had to wear the boot, and couldn’t work for at least 2 weeks, but it would take 6 weeks to heal.

Courtesy of Danielle Cosgrove

During this time from 2019 into 2020, I was getting ready to make a big move across the country to Denver, Colorado. I was following a huge dream of mine to make it into sports on the business side of the show. Inside sales was never really a big interest of mine, but I was motivated. I wanted to see what this opportunity would bring me. Another spoiler alert: COVID had other plans. I packed up my stuff and went on my way. In the beginning, it was very hard to move a ton of stuff in and out of the car to the apartment. My dad was there to help me, thankfully, but he ended up doing most of the work. He called me lazy. In truth, I was just weak and could not muster up the energy. I was living alone for 6 months. What could go wrong? Well, it turns out, everything.

Courtesy of Danielle Cosgrove

The first week I was there, it was Valentine’s Day. Being in a 5 year relationship at the time, my boyfriend was still living back in New York. He sent me flowers, a vase, and a teddy bear, and the whole thing was pretty expensive. I got the notification it was dropped off at my apartment door. I got there and there was nothing there. I was pretty confused, so I went to the leasing office, and they said, ‘Yes, we let the man in to drop them off to everyone’s door.’ They were confused too, so they looked at the cameras, and sure enough, my neighbor had stolen them and tossed them in the garbage. Once they found out and threatened him with calling the cops, he went down to the garbage and got them back and left them at my door and knocked. The reason I’m writing about all of this is because it caused so much stress and anxiety about living in this place. I was starting a brand-new job and stressed out from moving to a brand-new city on the other side of the country where I know no one at all— and all of this happens the first week I was there. I was already feeling more anxious than usual, but for some reason, I just could not let this go. I felt so alone and isolated and unhappy. Why was I like this? Why was everything hitting me like a ton of bricks? Why is this not going away?

At the beginning of March, since I was so lonely and needed a friend, I started to look into getting a dog. I looked at how much each place’s adoption fees were, and what types of dogs they were getting in. Then, one day while at work and on my break, I found the cutest little face. I will always remember the moment because his eyes were so PUPPY FACE. I knew I needed him. I went to the adoption event just to browse around because if I see this dog and he’s not right for me, I would forget about it and move on with my search. As soon as I walked in, it was like an invisible string literally pulled me to him, because he was the first dog I saw, and the only one I picked up and bonded with. I said to the foster mom, ‘He’s coming home with me, he’s the one.’

To this day, I will never regret getting my sweet boy, Bodie. He always knows whenever I’m in pain, he knows how to help me just by laying down and snuggling with me. Most of the time, he put his head right where I am hurting. He has been doing this since day one. He has helped me cope with the pain of fighting whatever I was fighting at the time because I still didn’t know what was wrong.

Courtesy of Danielle Cosgrove

Around April, I was doing really well, and I was not going to the doctor’s as often as the year before. Right before we moved from my first small Denver apartment to our much bigger one, towards the end of May 2019, something happened. I was just collapsing every time I got out of bed. I was dizzy every second of every day. I would drink a ton of water and stay hydrated and eat enough and I was still feeling ill. WHY? Nothing made sense to me. I started going to another ENT and another Cardiologist as referred to by my physician. The ENT ran a bunch of tests, and nothing came up, except I have a 26% vestibular imbalance in my right ear. They recommended occupational therapy, but I knew that wasn’t the only thing going on, and not causing all of these symptoms. This is minor to what I am dealing with. The cardiologist brought me in, and told me I likely have something called Vasovagal Syncope Syndrome, which is a sudden drop in heart rate and blood pressure leading to fainting, often in reaction to a stressful trigger. I knew this was not it. My heart rate went up, not down.

Courtesy of Danielle Cosgrove

When they wanted me to wear a heart monitor for 2 weeks, another doctor came in to talk to me, as well as the first one. I explained I had been looking for an answer to my illnesses for years and had no idea what’s wrong. I had brought up POTS (Postural Orthostatic Tachycardia Syndrome) because I was watching a show called ‘Diagnosis’ on Netflix recently and this girl’s symptoms sounded EXACTLY like mine and they tested her for it and that’s what she had. He was honest and said, ‘I don’t know too much about it so we will learn together.’ This was so eye-opening for me because no doctor has ever said something like this to me before. Whenever I come up with something, they just write me off and tell me, ‘No, you probably don’t have that.’ This time was different. After the heart monitor, they brought me in to go over everything, and my doctor noticed that every morning around the time that I wake up, it seems as if my heart rate spikes. I dread getting out of bed some days because of that. I pass out from it often.

The next test he ordered was a stress test. I couldn’t even finish that. I was in my target heart rate for the stress-induced part, but upon standing up, they noticed something. They noticed an ectopic atrial focus. This means the electric pulses in my heart are not coming from the correct spot, so I have premature atrial contractions. While this doesn’t affect most people, it’s affecting me a ton, and it just kept getting worse. In February of this year, I started to go to a wellness center for multiple things. I loved getting their IV drips mixed with vitamins and other good stuff. One day while I was sitting in there, the nurse practitioner came in to talk to the other nurse who was caring for me and heard a little bit about my symptoms and asked to schedule an appointment with me (she is a wellness and holistic practitioner). I loved the idea, so I agreed. At our appointment, I explained everything that was going on, and she suggested I do a full hormone panel test to see what’s going on in my body, as well as the Lyme Disease test called Igenex. It’s crazy expensive, but it catches more than a normal doctor’s office test would catch, and gives a more in-depth diagnosis.

Courtesy of Danielle Cosgrove

After waiting for 2 months, I finally get the call my blood results are back. I wasn’t positive in the words of the CDC but because I have bands that are present, it’s a positive diagnosis. It’s really confusing, but in order to be diagnosed in the CDC world, you must have a certain amount of bands. I moved back to New York from Colorado in September and I saw a Lyme literate doctor. For the first time, my eyes opened to so many things. He started me on 200mg of doxycycline right away and told me to take them until I run out. I started to take them and saw a herxheimer reaction to the medicine from it killing off the bacteria and spirochetes of Lyme in my body. Then everything went back to ‘normal,’ but normal for me is prior to taking these meds. Then, just last week, I suffered from severe abdominal pain, and my doctor took me off the antibiotic right away. For right now, we are stuck in limbo and don’t know what to do for me. I have an appointment with my doctor next week to talk about what our next steps are.

Courtesy of Danielle Cosgrove

That’s my whole story of what I have been going through for the past 6 years. Brighter days are ahead. I have been advocating for myself and others across my social media platforms. It is so surprising how little is known about Chronic Lyme Disease. I’m trying my best to get the word out there that this disease sucks. It’s not an easy disease to deal with. It’s so heartbreaking to live with this and know there is not a cure. Every person I have met that has been diagnosed with Chronic Lyme has been fighting for a cure as well. We are all in this together, trying to get everyone better, and it’s one step at a time. Unless you are in these shoes, you really don’t know what it’s like.”

Courtesy of Danielle Cosgrove

his story was submitted to Love What Matters by Danielle Cosgrove from Oyster Bay, Long Island NY. You can follow her journey on Instagram here and here and on Twitter. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about Lyme Warriors: 

‘It’s like being stung by a thousand bees.’ No one knew why I was in pain. And no one knew why the pain was spreading.’: Woman describes journey with Lyme disease, ‘It made me who I am’

‘How did I end up in a wheelchair from a bite? By my early 20’s, I was completely bedridden.’: Woman details ‘loss of faith’ while searching for Lyme disease diagnosis

‘My face shriveled up. I looked like I aged 50 years in a matter of minutes. Nobody understood the pain I was in’: Man diagnosed with Lyme disease, ‘There’s nothing you can’t accomplish’

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