Vanessa’s Story | June 20th, 2022
My name is Vanessa, I’m 17, and I’m from a small town in southern New Hampshire!
Lyme disease was always a concern to my family members. My younger brother got sick years before I did as a small child, but easily overcame it with a few weeks of antibiotics. June 2019 I was bit by a tick under my bra strap on my rib cage, I was 14 years old. Weeks later my hair started falling out, and the following winter I was experiencing knee pain and heart palpitations. Unfortunately we thought nothing of this.
July 1st 2020 I knew something was wrong.
From then on I was experiencing debilitating headaches that would blur my vision, constantly vomiting, could barely get out a full sentence, and was falling asleep literally anywhere I could. Most of my symptoms worsened at night. I was sent home from the ER many times after being told “it’s just hormones, the flu, it’s all in your head”
“Try not to think about throwing up and it won’t happen”. BS.
I was told I had an eating disorder and that I was “sticking my fingers down my throat” by a psychiatrist.
Within a month I had dropped close to 25lbs. I was only 130 and got down close to 100lbs. I felt like I was going crazy. If I wasn’t sleeping, I was paranoid and losing it internally. The worst part of it was being unable to describe how uncomfortable I was to my parents. All I wanted was for one person to feel just what I felt without telling me I’m “fine”.
August 2020, I was tested for Lyme, diagnosed, and started oral antibiotics that day. I was told within a few days I would feel relief from the unbearable pain I was living with. I believed because my brother got better soon, I would. I’ve only been sick for a month right? We caught it quick? Right?
Unfortunately, this disease was living in me for much longer, and after many months of no progress, I was diagnosed with chronic Lyme disease and bartonella.
I tried to do online schooling my sophomore year, but trying to look at a computer screen for 8 hours straight and unable to open my eyes with my “daily Lyme headaches”, this was entirely impossible, so I dropped out of all my classes, lost all my close friends and (at the time bf) and became very comfortable with siting in bed alone. I was unable to do the things I loved, hunting, fishing, snowmobiling… My life was completely different. It felt gone.
Some medications I tried that didn’t work were oral antibiotics (doxycycline, bactrim DS, ceftin, minocycline, malarone, rifampin, amoxicillin, azithromycin, cipro).
Come spring 2021 both me and my family were running out of options and switched my care from a Lyme specialist, back over to my primary care (thank the lord for that, they saved my life) and I had a PICC line placed in June 2022 – October 2021 and did 16 weeks of IV doxycycline and ertepentum.
Due to my ex boyfriend dumping me for reasons related to my Lyme, I was scared to be in any sort of relationship or friendship. My (now boyfriend) came into my life with the most support I could ever ask for. I thankfully found someone with the patience and understanding one with Lyme needs. He knew my mood swings, understood my inability to explain how I truly feel, helped flush my PICC line when I was too exhausted, and he would always make sure I was as comfortable as possible at all times. Even though we are a teen couple, the term “in sickness and in health” is important to us both.
To my surprise, In the fall of 2021 a stranger in my geometry class walked in with a PICC line in her left arm and I was shocked to have that connection with a girl my age. That sophomore is now my best friend.
I have built I strong bond with my doctors, and I have the utmost respect and appreciation for the time, stress, and strength they have given so that I am able to enjoy my life once more.
Out of all of this, I’m the most appreciative towards my mom and dad. I think it’s safe to say no parent should have to see their child suffer with an illness, but unfortunately it was a reality they had to experience with both of their children from Lyme. They have shown strength, compassion, love, and even at times when “understanding” was hard to do, they understood me.
Words of encouragement: With my story being told, I must remind the person reading this, that everything does happen for a reason, and with all the bad, there is good. Value it.💚
Where to find Vanessa: Snapchat : vmcglashan12 , Facebook : Vanessa McGlashan
Nicki’s Story | June 3rd, 2022
I don’t know when I got Lyme but it was sometime when I was a teenager on one of my hiking trips/ vacations. I just know over the years that I’ve had really bad declining health with every test telling me I am fine.
I was so suicidal at 18. I had constant violent panic attacks for months and I couldn’t even hear certain sounds or noises without going into a spiral. I admitted myself into the hospital so I wouldn’t kill myself. From that point on I was on a ton of antidepressants and hormonal pills which patched it/band-aided it for a time. So I’d have to still have a med adjustment every month or so because I would go through a frequent crash and have to constantly switch jobs and friend groups from embarrassing spasms either physically or mentally or both. At around 21-22 I was getting really bad seizures, shakes, fainting spells and more panic attacks. It got to the point where I couldn’t help it anymore and I couldn’t even work one day a week for three hours without falling on the floor and someone needing to call my parents to get me.
I couldn’t move or leave the couch or do anything. My mom just started to search out for different medical locations to take me to, eventually through referrals. We went out to Ann Arbor Michigan for testing outside the standard medical system. The nurse practitioner suggested that I get a Lyme disease test sent to the specialty clinic in California ConnieXions. I got my positive results back after spending $1500 on one test just to get an answer. I’ve been tested three different times by my primary care doctor in the past and they all came back negative because standardized Lyme tests only pick up positive tests 15% of the time. I was at the worst stage Lyme could be- at stage 3 with 3/10 types of Lyme disease.
I’ve been in treatment for about two years now on mainly homeopathic medicines, teas, antibiotics, organic foods/watching nutrition and hormone pills. The hardest things to deal with have been: my focus, shakes/spasms, depression, anxiety, asthma/trouble breathing, allergy issues and weight gain that I can’t get rid of no matter what I do which really crushes my self esteem and prevents me from wearing the things I like. Sometimes when I’m lucky I get to go for walks but most of the time it’s hard to walk around very well because of the dizziness and faint spells. If I can’t go for a walk my mom will take me out for car rides.
My mom is my Caretaker and spends pretty much all day everyday with me and is my best friend. Without my mom I would’ve been dead. She found me everything I needed and has provided me with everything she can so I don’t have to worry about anything and can relax in my healing process.
I’m having to re-discover myself through Lyme treatment especially since I’ve never been able to get a steady foot in life. I don’t know who I am but I’m trying to get there. And I’d like to find other people to help especially as I get better so I can fight for the little guy that doesn’t have a voice or power to speak up.
I have been lucky to make a few friends that will contact me and check up on me and will take me out to fun events and be my handlers which I’m very appreciative for. My senior pup Panda Rae has also been a huge support for me going through tough times with him always there to cuddle with me.
My favorite things to do to keep myself distracted through healing have been: Going for walks and enjoying nature when I’m able to. Painting with different mediums, sewing, crafts, and video games
Where to find Nicki: Instagram @Supernicki_97
Jessica’s Story | May 1st, 2022
I think everyone with Lyme disease has a unique story to tell.
I was bit right before my 22nd birthday in 2017. I was on a run in Glendale, CA. I came home and the following day I woke up with close to 20 bites on me. Like many people, I thought they were just bug bites. A few weeks later, I started having flu like symptoms without a flu in sight. I decided to have a drink on my birthday and within a few sips I instantly felt hungover. A few weeks after that, I was at a nail salon, stood up to wash my hands and fainted. When I woke up that’s when my life had changed. I called my mom, crying, telling her that I felt scared and something was wrong. She asked me what my first intuition was. I said there’s something wrong with my brain. Over the next few weeks, I had every test, MRI, trying to figure out what was wrong with me. Everything came back looking like a normal, healthy, 22 year old. My dad insisted to my doctor that I get a lyme test, he was hesitant but he ordered the test. I got the test 2 months later. My test came back positive with neurological Lyme disease and other co infections. I had never heard of Lyme disease. Like many people when their diagnosed, they feel lost. Some of us haven’t ever heard of this disease. It’s not in the media, it’s not talked about like any other disease. I felt alone.
I’ve seen numerous doctors, had different treatments and I’ve finally found a great doctor, almost 3 years after being diagnosed. My whole life has changed so quickly. I felt depressed, anxious, scared. I was still working my full time job I had had since I was 18 taking care of 3 young boys. I had friendships and I was in a long term relationship. Starting to really feel the effects of this disease, I lost friends , my relationship ended within a year of being diagnose. Most people don’t understand this disease. But they saw I couldn’t leave bed most days, so many disappeared. I spent my early 20’s hooked up to an IV bag and seeing different doctors every month.
The biggest mental struggle during this time has been my weight. I’ve modeled for the last 10 years. Having Lyme and seeing other Lyme patients, I’ve seen weight loss and weight gain. In the last 3 years I’ve gained 40 pounds. My hormones are still trying to get back to normal. I’ve had to learn more about my body and be more accepting of myself. I have new scars, new marks from various surgeries. I’ve had to come into a new mentality that I will never be my old self. Even when I become healthy again, I will never be the old me. When you’re going through this, you change, and you can’t deny that.
Advice for Lyme fighters: I will encourage anyone with Lyme, to keep fighting. Know there’s the bad days but also the good. focus on the good and have that support system in place.
Where to Find Jessica: @JessicaBaus on Instagram
Bella Rose’s Story | April 21st, 2022
I had just started my kindergarten school year. I remember waking up and wondering why my body hurt so bad. I was little so I didn’t really understand what was going on, so I of course went to my parents and they didn’t know what was wrong. My dad had just recently got diagnosed with Lyme disease so that’s one of the first things he looked for. We live in upstate New York so ticks are a very common known thing. We had found a rash which had looked like a bull’s-eye. He had brought me to a local hospital to get blood work done. They had told me that the test was negative. 2 to 3 months later we got a phone call from the same hospital saying they had mixed up my blood work with someone else’s.
At this point I couldn’t even walk up the stairs or simply get out of bed. I had missed 60+ days of kindergarten and they wanted to hold me back. (Which they didn’t gladly) My immune system was completely depleted and I had gone to the hospital multiple times within those months to figure out why I was feeling so poorly. Some treatements I tried were doxycycline, prednisone, and lots of holistic medicines. There were other factors that my body was trying to fight off as well.
In the short period of time that the Lyme disease was untreated I had developed multiple blood disorders and an auto immune disease. One thing that made it very hard at first was that I have a white blood cell disorder so I can’t fight off infection or sickness very well and I’m very prone to get sick even if I am slightly exposed to the sickness. Over the years I’ve learned ways to fight this. Recently they discovered I had rheumatoid arthritis. So on top of common joint pain and fatigue I was also fighting rheumatoid arthritis. I’ve gotten better though. I’m almost 19 now and I’m currently in the middle of a flareup. There are some days that are harder than others of course. Yet, overtime I’ve learned how to deal with my pain and push through.
The pictures show my family who has supported me through everything. My brother is one of my biggest supporters along with my dog and we loved to be outside together when I was able to get out of bed on my better days. My father was fighting Lyme disease when I first got diagnosed. He did everything he possibly could to figure out what was wrong and find out ways to help me.
Hobbies & Activities that helped get you through your toughest days: I painted a lot. Our days where I could barely move that I would just sit and draw. When I was feeling better my brother and I would go for walks outside because at some point so it was hard for me to even go for a little walk.
Where to find Bella: Snapchat for any people who need help or someone to talk to. B-leclair21