While I don’t have the treatment for Chronic Lyme Disease, I can offer you some advice how to live with it from what I’ve learned over the past 6 years in my own journey.
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*Please be aware that the following post is provided for general informational and educational purposes only and it is not intended as, and shall not be understood or construed as, professional medical advice, diagnosis, or treatment, or substitute for professional medical advice, diagnosis, or treatment. Before taking any actions based upon such information, I expressly recommend that you seek advice from a medical professional.*
MY OWN UNSOLVED MYSTERY
I love to problem solve. But this is one problem I can’t figure out. It seems no one can figure it out.
What do you do if you have Late Stage Lyme Disease?
I get asked this question ALL THE TIME and you’d think I’d have some great answer after all these years—but I fall short every time. When someone asks, I want to hand them the secret formula for success…but I just don’t have it.
TREATMENTS I HAVE TRIED
- Physical therapy
- Infrared sauna
- Talk therapy
- Rife machine
- Antibiotic treatment
- Ice packs
- Heating pads
- Epsom salt baths
- Homeopathic treatments
- Ionic foot baths
- Pain killers
- Bed rest
- Muscle relaxers
- Neurological medications
- Hormone therapy
- Vitamin IVs
- Ozone therapy
- Massage therapy
I’m sure there’s more that I’ve overlooked, but the point is, I’ve tried it all. I’ve seen at least 20 doctors or specialists (that is overwhelming to admit!), and had more testing than I care to remember.
I know which treatments produced awful results for me, and I know which ones seemed to soothe my symptoms, but the thing is…I also know people who reacted in the complete opposite way!
Every case is different. Some struggle with neuropathy, others with mental disorders. Lyme can attack a different area in each person. You may have heart, adrenal, or neurological issues (or all!) depending on your case.
Co-infections are common, and complicate things even further.
I’m slowly learning what my body needs and I can confidently say my flareups are much simpler to handle than they used to be.
I wish I had your formula, but I don’t. Instead I have some advice that I think can help anyone dealing with this disease to press forward and see a glimpse of hope.
TIPS FOR SELF-CARE AS A LYMIE
1. LEARN TO REST
Find a balance that works for you. I still struggle with going full-force super mom or bed-ridden (with no in between). Learn to take care of your body in this new situation you’ve found yourself in. Schedule in more breaks throughout the day, including an after-work nap or earlier bedtime. Break your chores in half to allow your body to recuperate (take 2 days to vacuum, etc.) or get help from family members.
2. TALK TO SOMEONE
Don’t try to do this alone. Lyme is hard. Ask for help when you need it, call a friend when you’re struggling. Talk to a counselor if you are overwhelmed or feel like a burden to those around you. You aren’t, but it helps to hear it from someone else! Make it a regular habit to reach out for encouragement from those who are helpful.
3. TAKE CARE OF YOUR MIND
This is something I wish I would have learned from the start. I believe the mental aspect is the number one place to start in the treatment of late stage lyme disease. You can read about all my tips for self-care here. I highly recommend this for any Lyme sufferer.
4. FIND YOUR MOTIVATION
Fill your life with things that inspire you. Maybe you used to be into music, art or decorating. Start learning about your passions again! Use this opportunity to give yourself a fresh start–a new motivation for life. When you’re in pain or depressed 24/7 because of Lyme, thinking of waking up to that life every day is not going to be motivating. Because I love art, I was inspired by the life of Frida Kahlo and how she painted every day she was bedridden.
Find a magazine that caters to your passions (Flow Magazine), watch a show that doesn’t stress you out (The Office), find a stand up comedian that makes you laugh (Jim Gaffigan).
You can read more about places to discover new hobbies or interests in my post Why You Need to Discover Your Hobby.
5. CONNECT WITH POSITIVE PEOPLE
It helps to have a community of people who understand what you’re going through. Unfortunately, I’ve yet to find a Lyme support group full of positive people. Most are a group of huge complainers (and understandably so!). While it’s good to be relatable, these groups can be detrimental to your mind.
Find a Facebook group or in-person support group where the overall feel is one of hope and positivity. If it becomes a pity party, it will only add to your stress and despair.
If you can’t find a Lyme-specific group, I’ve found that chronic pain or chronic illness support groups are good too if the overall vibe is encouragement or laughter.
FINDING YOUR OWN SILVER LINING
Lyme is the reason this blog even exists. It was my motivation every day to wake up early and go to bed later, because I had an outlet for something that reclaimed my life. It wasn’t about more suffering, it was about more hope.
This blog is my outlet for creativity, my resource for all the things I’ve worked so hard to figure out and a way to connect with others in the struggle. It’s been almost 2 years and I am still waking up early every morning to work on my art or my blog.
A HUGE THANK YOU to all of my readers for your support and encouragement along the way. To my fellow Lyme sufferers, I pray that you find what you’re looking for.
YOU MIGHT ALSO LIKE…
Whether you or someone you know is dealing with the treatment for their own Late Stage Lyme disease, it can be overwhelming to know what to do. Let me encourage you to share this workbook on Fear + Anxiety that I created with someone who needs it right now. It’s Bible-based and walks you through verse studies on fear, peace, trials and mindset. It also includes verse coloring pages! You can order it in my shop:
Here are a few more places you should checkout if you are a Lymie like me:
- What I Want You To Know About Late Stage Lyme Disease
- How I Went From Survival Mode to Intentional Living
- MEET AMY
- Your Story is Worth Sharing
- Looking for the Silver Lining During Difficult Times
Hang in there friend, there is hope for better days even in the suffering. I still struggle, but I am happier and more hopeful than ever. Don’t give up. You’ve got this!
WANT TO LIVE YOUR DAYS WITH MORE INTENTION? SIGN UP HERE TO GET INSTANT ACCESS TO MY FREE PRINTABLES:
love love love your heart and openness to help other people!
I have a friend with this so I’m sharing! 🙂
I hope it encourages her!
Ugh; Lyme is awful! We have all been lucky enough to have been diagnosed very early on with Lyme (and affiliated tick borne illnesses) since it is so rampant in our area and our treatment worked in clearing up all our symptoms but I know that it can live dormant in our bodies for years. I often wonder how Lyme will affect us as we age and what sort of flare ups we can expect. I say us because I don’t think we have a single family member that hasn’t had Lyme at some point…
So glad you are doing well! Catching it early is key ❤️
You really share your heart and motivation to help others in this post. So sorry you have to deal with this disease but you certainly are an inspiration for others to keep living. Thanks so much for sharing. #HomeMattersParty
Thank you so much for your kind words. It helps give me purpose in the pain ❤️