How Lyme Disease Has Changed My Life

How Lyme Disease Has Changed My Life hawk + pearl Morgan Mandriota

Not many people know this, but I have Lyme disease. I was bitten by a tick while hiking a trail in Cold Spring Harbor back in September and was diagnosed with Lyme about a month later in October.

 

Long story short, the tick was burrowed inside the inner calf of my left leg for about a month before it was extracted, which, thankfully, is short enough to avoid any serious long-term damage but, unfortunately, long enough to cause some health issues. As a result, the way I live my everyday life has drastically changed — from the foods I eat and the drinks I drink to the way I exercise, the amount of stress I can handle, and the amount of sleep I need every night.

 

Imagine being sleepy but you’re not able to drink tea or coffee to wake you up. Yeah, that’s how I feel every day of my life.

 

In case you were wondering, Lyme disease is no joke… and it absolutely sucks.

 

First Things First… What Is Lyme Disease?

 

Lyme disease is a tick-borne infectious disease (I believe it’s also considered an autoimmune disease). The most common tick species which carries the Lyme bacteria is the deer tick (or blacklegged tick), and they exist in different sizes — nymph ticks are tiny, specifically about the size of a pencil tip, whereas adult ticks are larger and more visible. 

 

Once bit by an infected tick, it releases and transmits the inflammatory disease into your body in the form of spiral-shaped bacteria called spirochetes. These spirochetes penetrate deep into your muscles, nerves, and tissues — all of which can potentially degenerate and become disabled without immediate, strong, and effective treatment.

 

Fun fact: Ticks are not considered insects. They are actually classified to be arachnids like spiders.

 

Fun fact #2: They are the worst. :’)

 

Ingrown Hair Or Tick: An Idiotic Autobiography By Yours Truly

 

So here’s my story.

 

Last September, I went for a hike with Mel and her dog Ozzy. We hiked an entire trail over in Cold Spring Harbor right by the water. When we finished, we checked ourselves for ticks. Neither of us found anything at the time, but I got bit by a tick that would end up giving me Lyme disease.

How Lyme Disease Has Changed My Life hawk + pearl The day I got bit by a tick. Cold Spring Harbor hike with Mel and Ozzy, September 2017
The day I got bit by a tick. Cold Spring Harbor hike with Mel and Ozzy, September 2017

 

*WARNING: UPCOMING TMI ABOUT REMOVING THE TICK*

 

A few weeks later, I mistakenly thought the nymph tick burrowed into the inner calf of my left leg was an ingrown hair. When I pulled it out with a tweezer, the ingrown hair didn’t really look like a hair at all (and that’s because it actually had a body and legs).

 

A day or so after its removal, my calf grew inflamed. The removal site became surrounded by a big, red, circular rash (AKA the quintessential “bullseye” rash symptom from Lyme which I mistook for irritation from my poking and prodding). Then it started to pus. Thinking it was fixable, I applied some Bacitracin and a band-aid over it and hoped for the best.

 

Then came the symptoms.

 

What Were My Symptoms?

 

Shortly after, I started to feel really ill. I thought maybe just my iron level was low, but then that illness proceeded to get worse each and every day — and that’s when I knew something was seriously wrong.

 

Here are a few of my more prominent symptoms:

 

  • Shortness of breath: I would be out of breath after getting up to go to the bathroom.

 

  • Bruising: I had insane bruises on my body, all of which took forever to heal.

 

  • Irregular heartbeat: My heartbeat was irregular and extremely fast even when sitting still.

 

  • Extreme fatigue: I was SOOOOO TIRED. I’m always shot, but I was literally glued to my couch and grew more tired at the thought of moving. I couldn’t even get out of bed in the morning.

 

  • Poor brain function: My brain also wasn’t working right. I couldn’t concentrate or speak in proper sentences and I struggled to find the right words to say.

 

  • Poor vision: I was having trouble seeing straight. My vision was so blurry, and I couldn’t focus my eyes.

 

  • Decreased appetite: I went from being a girl with an insatiable appetite who went to bed excited to eat breakfast in the morning to someone who had to force herself to eat throughout the day. THIS was one of the main telltale signs that something was wrong.

 

  • Numbness, pain, and tingling: Finally when I started feeling pain and numbness in my tongue, joints, legs, arms, and other extremities, I knew it was time to figure out what was going on once and for all.

 

So with a push from my coworker, I went to a local blood doctor on my lunch break… and thank god I did.

 

The Diagnosis Process

 

At the doctor’s office, the nurse drew a million vials of blood and took a bunch of vitals. A few days later, the doctor called me while I was on my way to work and he said, “so your iron level is low, but everything else came back normal.” Yay!

 

Then he casually asked, “also, do you know you have Lyme disease?”

 

That’s how I found out I had Lyme disease.

 

I obviously said no. He acted like it was no big deal and called in a prescription to my pharmacy… and that was that.

 

After we hung up, I cried, called my parents, broke the news to them, and was convinced that my life was over. I went to work 10 minutes later, immediately told my bosses what was going on, then left to go pick up my medication.

 

Antibiotics, Herxes, & Feeling Like Death: The Process Of Getting Rid Of The Disease With Medication

 

During the treatment process, you get worse before you get better due to the fact that your body is killing off those toxic bacteria and spirochetes. The die-off of these spirochetes is called a herx reaction, and it literally makes you feel like you’re dying yourself.

 

Related: On Death And Dying

 

I was on extremely strong antibiotics (I believe Doxycycline?) twice a day for two weeks. Research states that a typical Lyme treatment cycle is about 3-4 weeks of non-stop antibiotics or even a steady antibiotic drip IV in the hospital.

 

A few months and more blood work later, my doctor said I was okay and didn’t need to come back anymore. It’s been 3 months since I’ve last seen him.

 

How Does Lyme Disease Affect My Everyday Life After Treatment?

 

So, what’s it like living with Lyme disease? It’s been about 7-8 months post-treatment, and I feel 1,000,000x better. However, Lyme never truly goes away or leaves your system, so now I’m left with lingering side effects and a changed lifestyle.

 

Here’s how Lyme has impacted my life every day over the course of the last few months:

 

  • Diet: I try to eat an anti-inflammatory diet. I can’t eat white bread/rice/sugar/flour, processed products, or sugars. If I eat like shit, I feel like shit. Too much alcohol can also be detrimental to my health and even trigger my depression. Oh, and I can’t drink caffeine anymore either. I MISS TEA AND COFFEE (RIP to the container of dark roast Trader Joe’s coffee grinds wasting away in my kitchen cabinet).

 

  • Sleep: I need a lot more sleep in order to feel okay — specifically about 7+ hours every night. If I run on less than 7 hours of sleep, I will be absolutely drained throughout the day.

 

  • Energy: I regularly have low energy and I fatigue easily (easier) when exercising. When training BJJ, I lose my breath and have to sit on the wall to catch my breath after going live with one or two people. My friends say I’m just out of shape, but it’s due to my Lyme.

 

  • Emotions: I feel more chronically depressed and overly emotional.

 

  • Stress: Stress affects me more seriously. I have to keep stress levels and negativity in my life at a low or else I can have a symptom flare-up. If I’m super stressed, I can become really sick.

 

  • Everything else: I still get random numbness every now and then. I still get really bad headaches. My vision is still blurry, so much so that I have to wear my glasses all of the time. I have a horrible memory (even worse than before). I still can’t recall the right words to say and I take a while to complete my sentences. I might have actually become a space cadet.

 

Although my experience has had its fair share of issues, I am beyond grateful to be impacted on a much smaller scale compared to those who have gone undiagnosed and untreated for months or YEARS and ended up with serious, chronic medical complications as a result.

 

What Helps To Relieve Lyme Symptoms?

 

Thankfully, there are certain things I (and you!) can do to lessen the burden of living with this disease. Here are some therapeutic things I’ve found that help to relieve my Lyme symptoms and decrease the frequency and amount of symptom flare-ups I get:

 

  • Eating a clean, anti-inflammatory diet
  • Exercising in moderation
  • Keeping active
  • Being happy
  • Doing things I enjoy
  • Drinking alcohol less frequently
  • Drinking water and staying hydrated
  • Medical marijuana (beware of your state’s laws regarding cannabis)
  • Cutting out/down my sugar intake
  • Cutting out caffeine entirely
  • Decreasing my stress load
  • Increasing the amount of sleep I get

 

Overall, I’m just trying to live my best life as healthy and happy as possible. My mom recently told me not to go hiking anymore because I could suffer from a major flare-up if I get another tick bite. Of course, I understand her concern because she’s right, and that’s a scary reality I have to face, but I refuse to accept that option. I won’t let Lyme disease ruin my life or prevent me from doing the things I love, because life is too beautiful to be destroyed by living in fear of risks and things out of our control.

 

How Lyme Disease Has Changed My Life | Morgan Mandriota hawk + pearl
Me, pictured hiking, doing what I love, and not letting Lyme get in the way.

 

Thank you for reading my story. If you have been affected by Lyme, please feel free to share your experience in the comments below. Also, if you have any questions about what Lyme disease is or want to talk about something I’ve mentioned in this post, please don’t hesitate to ask or drop a note below.

 

REMINDER! Please be safe when hiking, and always, always, ALWAYS check yourself for ticks after going through grassy or wooded areas. Nymph ticks are TINY! Enjoy the outdoors but be careful.

 

Here’s a helpful tool to use if you’re ever concerned you may have been bitten by an infected tick: Lyme disease checklist from lymedisease.org.

 

You Might Also Like: 3 Positive Habits That Will Change Your Life

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Comments

  1. Peg doukas

    Hi Morgan-
    This is your Aunt Peg—- Uncle Anthony’s friend………
    He told me last night about your lyme disease….. I am so sorry to hear about it, but I can tell U—- with all the strength I have & belief—–
    U will be alright……… U will sweetheart…….. u r young—have the genes of your parent’s & the strength of conviction…..

    If I can do anything to help u——– in anyway——- anytime——- please let me know………

    Many kisses, my dear—-
    Aunt Peg

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  2. Rebecca Sally

    I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, so this year our family doctor started me on Natural Herbal Gardens Lyme disease Herbal mixture, We ordered their Lyme disease herbal treatment after reading alot of positive reviews, i am happy to report with the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using herbs, my symptoms totally declined over a 8 weeks use of the Natural Herbal Gardens Lyme disease herbal mixture. My Lyme disease is totally reversed! Their official web page is www . naturalherbalgardens . com this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier

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      Morgan Mandriota

      Hi Rebecca,

      Thanks for reading my blog and sharing your experience with me. I’m interested in learning more about which products you purchased and how they helped you overcome Lyme. Which herbs did you start taking? And all of your symptoms went away as a result?

  3. Kim

    I am happy to hear you are a million times better but just want to clear up a few facts. Your statement about the tick being in you a month was short enough to not cause long-term damage is completely false. Sadly it doesn’t take long for a tick to transmit multiple infections. Additionally, I hope you were tested for co-infections because most everyone with Lyme has them. And based on symptoms you mention above it sounds like you have some. Also, it sounded like you only got 2 weeks of antibiotics. Maybe I misread that but unfortunately that isn’t long enough for most people. I encourage you and any one else with a bite to see a Lyme Literate doctor to make sure they get the proper length of antibiotics and tested for co-infections. Chronic Lyme is hell! I wish you success on your healing journey.

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      Author
      Morgan Mandriota

      Hi Kim, thanks so much for your comment. You’re 100% right and I should correct that statement within the post. I don’t think I was tested for co-infections which is most likely why I’m still feeling this way. I very recently made an appointment with an infectious disease doctor who specializes in Lyme and its co-infections who I’ll be seeing in two weeks — fingers crossed for some relief. Do you suffer from Lyme as well? I truly hope not, but it seems like you know a lot about it. Either way, I appreciate your kind words and well wishes. xo

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