Living with Lyme
is quite sour
I've considered writing this article for awhile now but honestly wasn't sure if anyone would want to read it. I hope that it might shed some light onto the often misunderstood long-term effects of Lyme disease through my own experience.
In my case, I found out almost 5 months after I was bitten by a deer tick. I had no idea that the severe 'flu' I had in September of that year was really the onset of the disease. At the time, I lived in an area where ticks were not incredibly prevalent. I'd never seen one on my dog and don't remember ever feeling bitten or seeing that hallmark bulls-eye rash.
Once I had my diagnosis and new what to look for, I was able to pinpoint exactly when the infection began as it was literally the worst flu-like symptoms I'd ever experienced. The chills were brutal, the body aches were awful. I didn't remember ever feeling that sick before, but it passed in a few days and life went on.
Until that following January.
I woke up one morning to so much pain. Every joint in my body ached so badly it was hard to think straight. My knees and ankles looked as though they'd been inflated with air. I had no idea what was happening. I was also so exhausted, I could hardly get out of bed, and I had a fever to boot.
I ended up waiting until the next day to see if things were better and when they weren't, I went to an emergency care clinic. At the time, I had no family doctor so that was the only place I had to go. Thankfully the doctors there ordered some blood work which came back positive for Lyme disease, fifth disease and mononucleosis.
As I think back to this time, I believe getting the adult version of this normal childhood disease, fifth disease, is what pushed my already compromised immune system over the edge. A few of my young children had recently had it, so I accepted that I probably contracted it as well.
However, I did not feel I had mono. None of my symptoms followed that diagnosis and upon doing some research, I discovered that it could be a false positive.
After receiving all of these diagnoses, the doctors felt that I could have developed rheumatoid arthritis, and I was shipped off to a specialist. I also received the antibiotic for Lyme, but in all likelihood it was too late for it to do anything as my diagnosis went undetected for so long.
I went to see the specialists for several months, during which time I was placed on a handful of medications including steroids, both oral and topical, and several others. One of them was a drug they give to cancer patients, and I was only getting a very low dose that I took once a week. It made me so sick. I will never forget the way it made me feel and couldn't imagine then or now, how someone could tolerate or even function on a full-strength dose. All of which barely took the edge off the pain.
Which was constant.
I had four young children at the time and two houses to keep track of as my husband worked out of town. The previous fall, we'd purchased an old farmhouse that we were renovating and the stress was already taking its toll before the diagnosis.
As I continued to see the specialists and heart doctors, and had more and more bloodwork done, I came to the realization that so little is really known about the long-term effects of Lyme disease.
I did a lot of research into rheumatoid arthritis, and then UTCD (Undifferentiated Connective Tissue Disorder) as they switched my diagnosis, and also into all the medications I was taking. It was so much to process, and I'm thankful I was at least able to understand a lot of the publications and medical terminology because of my undergraduate degree.
The pain was constant and my energy hit an all-time low. It was everything I could do to get out of bed each day and care for my family. I eventually stopped going to the rheumatologist, and stopped all the meds but the topical steroid. All they'd done was make me nauseous, dizzy and tired as well as packed on the weight.
Unfortunately it took me over 2 years to finally start feeling a bit better and have my immune system on the road to recovery. To this day however (9 years later), my joints have been permanently affected, and I have issues with my connective tissue, especially over my heart. My energy has never quite recovered either, but that could be more due to the dreaded peri-menopause!
If you're in an area prone to having deer and therefore ticks, I encourage you to check yourself each time you go outside and check your pets as well. If caught early, Lyme disease can be treated fairly easily. I would not wish the long-term effects I'm stuck with now on anyone.
I hope my story brings more awareness to this preventable disease. I've included a link to the CDC (Centers for Disease Control and Prevention) which explains more on the topic if you'd like to read up.
Thank you for listening! And please spread the word :)
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Comments (41)
This is so informative. You reminded me to check for ticks! Thank you for sharing. I’m sorry this happened to you.
Well research( unfortunately also first hand knowledge) thank you for calling out a warning to others
I I have been bit by a bed bug's before when I slept in My friend place The next day I feel very sick, I was so confused what is happening to Strong Man like me, bit by bed bugs is never a good experience
Thank for share your feeling to us, best wishes
What an eye-opener of a story! I applaud your courage to share such a personal and difficult ongoing journey. I freely admit that I quickly scrolled past the photos as they give me the heebie-jeebies. Scary! Particularly, the part where you said that you didn't feel anything to notice getting bitten. Sheesh! Bugs can be terrifying! I wish you every healing vibration for your health and peace of mind. Well-written and informative top story!
First, congratulations on Top Story. Second, this so relateable. We are soul sisters for more reasons every day. I too suffered a lot of issues from disabling autoimmune condition(s). The doctors took me from I'm fine and healthy and don't look sick, to I'm just too type A personality (over-stressed), to borderline hypocondriac, to mystery diagnosis (we can't explain all these off numbers in your chart and fibromyalgia, to you have 2 months to live possibly, to....I gave up on "traditional" medicine and went alternative to heal myself and others.
Sorry 2 hear about your health struggles... I'll be praying that you eventually make a full recovery! Congrats on your Top Story!
"I eventually stopped going to the rheumatologist, and stopped all the meds but the topical steroid. All they'd done was make me nauseous, dizzy and tired as well as packed on the weight." You're not the only one. Years ago I was diagnosed inflammatory arthritis. My rheumatologist suspected RA, but I lacked the inflammatory markers. She went ahead and treated me for RA. The meds made me so sick, and I was still in pain. I walked away from conventional treatment. Thanks for sharing your story. So many people still don't know about Lyme disease.
My dear friend, I can only imagine how hard this has been - not only to find out you had this, but to live with this, of course. ❤️ I hear about people contracting Lyme all the time and it is definitely very scary :( I do live in an area where there are hills and deer. Thank you so much for taking the time to tell your story and bring awareness to this sneaky disease ❤️❤️❤️ You are so strong and resilient 🤗
Heather, I'm so so sorry for all that you went through, and for all of the side effects that you still have to deal with! I can't imagine going through all of that, especially having little ones who depend on you. So sorry for your struggles, but grateful to you for sharing your experience! I'm always on the lookout for those nasty little guys!
Thank you for your sharing your story. I know how hard it is. You’ve inspired me to potentially share my own health journey at some point. Proud of you 👏🏼
Gosh, I am so sorry you had to go through all that. It sounds grim and completely debilitating. Found your article really useful and informative though. Great stuff.
I have lived it tick country most of my life. My dad was a logger so I was always in the woods. I hate ticks so much. Now that I understand Lyme disease better from your article I'm glad o have been fortunate enough to avoid it. I'm so sorry you got it.
Thank you for bringing attention to this oft misdiagnosed disease 🙏. I hope this day was good to you. Take care and congratulations on your Top Story 😄
Congrats Heather!
I’m so sorry that sounded so excruciating. I’m glad you are bringing awareness to this issue, most of the time I am diligent of bugs as once I had a tick on me when I was at Girl Scout Camp Yuck!, but it’s always good to be aware of all sorts of nasty parasites that cause disease. Congratulations on top story!!
It's scary how such a small insect can cause such a disease. I've heard of Lyme disease before but I never knew that it could become a long term disease. I always thought it was an easily dealt with disease. Thank you for this article, made me learn something new. And I hope you are feeling better (you said your immune system is recovering, does that mean the disease is gone/will be gone?)
Congrats on the TS
Congratulations on your Top Story 👍
I knew I was going to see this here eventually! Congratulations, Heather!
We live in an area where Lyme disease and ticks are prevalent. Dogs are susceptible too and recieve vaccinations for it at the vet. Usually, if you remove a deer tick ( about the size of a pin head, not the larger wood ticks) within 24 hours you are deemed safe. I always shower thoroughly and throw my clothes in the wash after time in the woods or in raking dry leaves. The main first symptom is a rash around the bite site but that only happens in 50% of cases. There is a huge range of secondary symptoms including Bell’s palsy and it can be up to 3 months before it shows up in a blood test. I hope you continue to recover Heather! It’s amazing what our bodies can do to heal themselves over time with the right treatment.
This article explains everything so well, and I'm sure by sharing you will encourage others who likely feel unseen.
Thank you for writing and sharing this, dear Heather. It takes courage to be open and vulnerable - I see and admire that in you. I'm grateful that you were (and hopefully are) able to get the care you need 🫂
OMG!!! Thank you for sharing your personal experiences with the medical and ling term effects of Lyme disease. Sending hugs!!!💖💖💕
Oh my gosh, how awful for you! I hope this doesn't sound dumb, but it is just another reason we are in awe of you. With all of your struggles, you are still willing to move us with your uplifting words. Thank you for sharing this