Lyme Disease - My Story 💚
It's Lyme Disease Awareness Month & as a fellow Lyme warrior - I wanted to take the time to share my story with Lyme Disease after being diagnosed a year ago. 💚 This story is very hard for me to share & has taken me awhile because just typing it out nearly gives me PTSD as I relive the events & feelings in my mind of how I felt during that time. This post is a lengthy one, but if you're willing to stay - this is my Lyme story 💚
In November & December of 2019, I noticed was I continually getting sick - sick so bad that I was in & out of the ER because my symptoms were very severe. I had been told I probably had the flu or a virus of some kind - I now believe it maybe could of been Covid at one point, but that's up for debate... I continued to get on antibiotics prescribed to me from my physician at the time. I was in a routine - I would take medication, feel better, then once the meds were all out - I was back in the dumps again feeling like shit. Then it became scary as I battled a UTI that turned into a kidney infection. I got on more antibiotics for that & they seemed to get things cleared up...
Then the hardcore Covid lock down happened. I showed up to work on a Friday & our boss told us to take our equipment home because we wouldn't be coming in Monday - we'd be working from home. I followed the recommend guidelines before they were implemented because I had been following the outbreak when it first was reported in China. I wore a mask in public despite the CDC at first telling individuals not to. Once the full lock down happened, we ordered groceries online & my husband was the only one leaving the house to go to work where they took very strong precautions. The transition working from home with limited resources - combined with the panic being so high from the world coming to a stand still was hard, but I kept my spirit up & made the most of it. I got up early as I would for work in attempt to keep my schedule the same for when we did go back. I actively worked from home, attempted to put on makeup & normal clothes. I was the picture perfect quarantine model per the media's checklist. Until one day I woke up with my head hurting so bad I could barley open my eyes...
I'm not one to get headaches often, but had noticed in late March I was getting more forehead pressure & assumed it was just frustration from working from home with difficulties that caused me a tension headache. But when I woke up with my head hurting as bad as it did, I was scared because I realized how weak I felt & I was freezing with chills. I moved my laptop to my bed to work, but my office phone required a landline which was in our other room so I had to struggle & muster all the strength I had to get out of bed each time an associate called for assistance. Running to answer the phone in another room seems so simple, but when you can barley stand - it became very brutal. As much as I felt like shit - I continued to work from home like this for almost a week because I felt working from home was already such a luxury that I didn't want to seem pathetic to my company. Then I got worse..
When I went to bed, I had chills so bad that my husband put nearly 5 blankets on me. I'd wake up in the middle of the night with night sweats so bad that the mattress was soaked. That's when I became really concerned that I could have Covid. However, when I took my temperature, it fluctuated from 95 degrees to 96, but never a high temp even if I had chills or night sweats. I contacted multiple hospitals to try & get a Covid test, but many refused me because Covid was in the early phase & they were limiting who they tested. I was legit told because of my age that if I did in fact have Covid, my survival rate was much higher so I'd just have to ride it out & the phone clicked. With all the tests being so available now, it's seems crazy to think there was a time where you couldn't just easily get tested, but that was the reality I faced & it was terrifying. I called other hospitals & a few nurses assured me that my symptoms didn't seem Covid related, but to be safe - they ordered me to stay home. I was still terrified - not only for my health, but for these reasons - 1. We couldn't afford for my husband to miss work for quarantine or wait for unemployment to kick in. 2. The whole point of us working from home was to avoid anyone from getting sick & if I did in fact have Covid I knew my boss would be upset because that meant the effort of working from home was pointless. But as mentioned - we hadn't really gone anywhere or interacted with anyone to have been exposed! Finally - I had to come clean to my boss that even working from home wasn't something I could physically do. I remember shaking and crying on the phone, but I knew I needed to focus on my health because at that point I wasn't performing as needed & was only being a weak link to my team.
Since I couldn't get access to much - I took what I had on hand - Tylenol Cold & Flu, Nyquil, Ibuprofen, Elderberry, Vitamin C, & EmergenC. I even put my head over boiling water to try & get the steam to relieve my pounding head & so many other different methods to ease my worsening symptoms. I was beyond weak. So weak in fact that I needed my husband to leave work early multiple times just to help me go to the bathroom because I couldn't do it on my own without falling & hurting myself from being so frail & weak. My body felt like someone took a sledge hammer to it, my head hurt so bad no matter how much medicine I took that I was dizzy with my eyes open even when I was laying down. At one point my chills got so bad it felt as if I was having a seizure. The night sweats continued to soak my clothes & sheets & my body ached & felt like it was on fire. I tried to sleep & give my body rest, but being in that much pain it was nearly impossible & the exhaustion just made it worse. Then I quit eating & lost 15 lbs in under 2 weeks & not in a good way. It was then that I really felt like I was deteriorating.. I wish I could describe in better words what I went through because typing it out it doesn't give it justice or make it sound bad, but anyone that has had Lyme Disease knows exactly what I'm talking about. The pain and experience I went through I wouldn't wish on my worst enemy.
So you might be thinking - Why didn't I just go to the hospital? Because for someone that was sick during that time - going to the hospital meant I might not come back out. Going to the hospital meant I wouldn't be able to see my husband or possibly be able to communicate with him & who knew what would happen. It was a horrible fear shown all over the media, but for some people the decision to go the hospital & possibly not come out was a horrible reality.
After nearly two weeks of battling, I had hit rock bottom mentally & physically. I couldn't believe how quickly I lost control of my health & ability just to function independently with something as simple as going to the bathroom on my own or showering. I stayed quiet on social media & didn't tell even my immediate family. All the meanwhile, I wanted to shout out to anyone that would listen about how much pain I was in because it was eating me alive inside & out. It's something I'm ashamed to admit, but while at my lowest point laying on my living room floor that I fell on after rolling my weak ankles with my hips in horrible pain crying - that I wondered how sharp my kitchen knives were & if they'd sharp be enough to cut my throat because it couldn't hurt any worse than what I was going through. Yes, that's how bad it was...
In addition to everything else going on - I was terrified to speak about my situation out of fear that myself or my husband would be Covid shamed. Again, we couldn't afford for him to not be working. BUT I had been reassured my multiple doctors that my symptoms weren't Covid related & that he was fine to continue to go to work. Doctors still required me to wait 14 days before being seen in person & I was frustrated because with as much media coverage that there was on Covid, there was never any progression stage timelines put out there. While I understood that it was still very new - I felt there had been enough people with cases & many doing studies, that I felt there should have been some type of general timeline to go off of to decide if you were on the upward progression of getting better or really needed to seek out medical help if after 14 days you weren't better. No one & I can say no one because - I laid on the couch for so long watching the news that we have a permanent indentation in the couch from my body - nobody covered this type of information & it was incredibly frustrating. While it wasn't believed that I had Covid - I still wanted to be triple sure & such a timeline would have been helpful on what to look for just in case.
Finally, through a family member that works as a doctor, I was able to get an appointment scheduled to get blood work done & to be seen in person. The day before I was going in to get lab work done, my boss called to check in on me & I let them know my condition wasn't improving. She told me my coworker suggested to have the doctor test for Lyme Disease too because my coworkers Aunt had similar symptoms & that's what they found it to be. The plan with my doctor had already been to test for everything, but by request she added on the Lyme disease test to the lab order. I figured at this point it couldn't hurt to test for it & to be honest I didn't know much about the disease except for that my favorite singer, Avril Lavinge had been diagnosed with it & it crippled her career. (<--- weird things you remember from your teen years, I know.)
The day I went to get my labs done, I was so unbelievably weak from exhaustion & not eating that I chugged multiple Ensure drinks just to be able to put clean sweats on & sit up for my husband to comb my horribly matted hair from laying down all that time. When we showed up to the hospital I wasn't able to bring anyone in so my husband dropped me off at the door and I got temperature checked - they thought it was broken because my temp was so low. Then they offered me a wheel chair to get me to the lab area because they could just tell my lack of strength. I went back to get my blood drawn & the nurse doing it was a bit sarcastic & asked me if I was dying as a joke & when I nodded yes in response I could tell she felt bad for the comment. I sat down to give blood. - Now mind you - I've had my blood drawn dozens of times & I have absolutely no problem with blood or needles for that matter with the multiple tattoos I have. But after multiple tubes of blood being drawn out - I legit could feel myself leaving my body & warned the nurse in a faint voice - "I'm going to pass out." & repeated it a few times until *BOOM* I hit the deck. The needle broke off in me because she was in the middle of getting more blood & the hospital staff had to pick me up into a bed. The once sarcastic nurse now was very nurturing and continued to give me orange juice as they dug to get the broken needle out of my arm. Once the blood work was done, they made me rest for awhile before releasing me & wheeled me out. - We laugh now, but when we originally pulled into the hospital parking lot I had a panic attack because it was the first time I had left the house in over a month & the site of seeing people wearing masks & coming out in & out in wheel chairs took my anxiety to the whole new level that I started to cry & then here I ended up becoming what my fear was - being wheeled out in a mask - sigh*
I went to my doctors office the next day after giving the blood & got multiple shots including Cortisone that immediately made me feel better. Like night & day difference better. I finally ate an actual meal - I took a shower on my own & when I slept - I slept for 14 hours because my body was finally able to get comfortable - I have tears coming down my face writing this because I'll never forget the feeling of relief & thinking about it makes me super emotional. The lab work came back & it was confirmed that I had Lyme Disease. I remember being told the news & while most would be upset - I was just so relieved to finally have an answer on what was happening to my body. I got on antibiotics immediately, steroids, dozens of supplements to help my liver & kidneys that were being harmed from the Lyme & 50,000 units of Vitamin D. In addition, I pushed myself into hardcore research on my condition because sadly there isn't much out there for those with Lyme Disease.
***Disclaimer: There's no way of telling when or how I got the Lyme disease. I didn't have the classic tick bite with a ring or rash symptoms. I'm a drink on the patio for outdoor activity type of gal too who typically coats herself in OFF to prevent mosquitos - so how I got it is still a mystery.
After getting everything in place - I thought I'd be better, but sadly that wasn't the case. After getting on all my medicines, I realized how exhausted my body was from fighting with itself & I was sleeping non stop. I quickly gained back the 15lbs & a little more because I was finally eating again. Sadly, I lost my appetite for a lot of things I used to love. My body heavily relied on the steroids to aide in the inflammation that was causing my body so much pain so an extreme diet change had to happen. And with a lot of research I was able to find natural supplements to help my inflammation, kidney & liver so I didn't have to continue on the harsh medications. After a lot of research, I discovered that all the times I was sick may have been because of the Lyme. But taking antibiotics for what was thought to be the flu or other illnesses suppressed my symptoms, but because they weren't the correct antibiotic for Lyme & I wasn't on them very long - that's why my symptoms came back & when I ultimately hit rock bottom.
It's been a year now & I'm getting closer to remission.. My really horrible symptoms have been at bay for a while, but I'm far from perfect. There are times that I am in a great deal of pain from a flare up. I've taken more medications & supplements in the last year than most will take in a lifetime. In addition, recent brain scans have show lesions possibly linking to bipolar depression caused from the Lyme. I do my best to hide it because people only care to hear about your problems so much - especially when it's medical stuff. But there are days where I can't fake it & I have to listen to my body & its needs. I've had to cancel plans unexpectedly due to an unexpected flare up, I've had to call off work because getting out of bed simply wasn't an option & I've had to find unmeasurable mental strength to keep going on the days I truly feel like this disease is winning. But I refuse to let it. I am a strong warrior & I refuse to let this disease keep me from living my life.
For those wondering - I’ve been tested not once, not twice, but three times all from different practices just to confirm my Lyme results weren‘t just a false positive & for second opinions. I’ve been working with traditional doctors as well as natural healing doctors to work towards treatments that work for MY body. Sadly, Lyme disease isn’t heavily researched & goes very undiagnosed in many. With that being said, there’s approaches with antibiotics to take to get rid of harsh or standard issues, but for those like myself that have chronic Lyme or co-infections - the path to recovery is expensive & not so clear cut. There’s a lot I could tell you about the disease since treatment for many with Lyme is basically by self educating due to the lack of research, but I’ll spare you the boring details. Just know I’m doing everything in my power to continue to recover.
My hope is that anyone who is reading this that is going through something - no matter if it's medical or something completely different - that they feel hope. You might not be able to move the mountain, but if you can at least find the strength to climb it - I promise it's worth it. It's not going to be easy, you're going to need some time for breaks or break downs, but keep going - you're almost to the peak. I will continue to climb my mountain everyday because I am & will always be - a Lyme warrior 💚
Thank you for listening to my story 💚
Mrs. Northern Belle
Special Thank to my husband, Charles for taking care of me during this difficult time! I couldn't have made it without you. My doctor, Danielle Winzeler for acting fast and getting to the root of the problem! To my employer, for being flexible & allowing me the time I needed to recover. And to my best friend, Jessica! Thanks for keeping my spirits up boo! I needed you!
Disclaimer: To anyone going through a tough time that needs someone to talk to - never be ashamed to contact the National Suicide Prevention Lifeline: 800-273-8255 or reach out to a friend or loved one.
For more information on Lyme Disease & precautionary steps you can take visit - https://www.lymedisease.org/