Undiagnosed & Suffering With Lyme Disease: I Felt Like I Was Dying

a bed That has been slept in

Last Updated on August 9, 2022 by Lori Geurin

It’s been 5 years since I was bitten by tiny ticks that infected me with Lyme bacteria.  Like the hundreds of thousands of people who get Lyme disease each year, it changed my life radically. For several months, just like Avril Levigne, I felt like I was dying.

I went from being a healthy and active young mom to 4 beautiful children, to being barely able to walk a few yards to my mailbox. Everyday tasks such as taking a shower and getting dressed became incredibly difficult.

And it all happened so fast.

I realized I had taken my good health for granted. This made me able to empathize with friends and family who also were dealing with chronic pain and chronic illness. Because I was living it too.

The many doctors and specialists I went to couldn’t figure out what was causing my rapidly deteriorating symptoms. And, because of this, I was untreated for 18 very long months.

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What Is Lyme Disease?

When Lyme bacteria, or Borrelia Burgdorferi, has free rein over your body for this long without being treated the damage can cause destruction to every organ and system in the body. This includes the heart, brain, neurological and immune systems.

Lyme is called “the great imitator.” This is because the symptoms are like so many other diseases and conditions. These include Multiple Sclerosis, fibromyalgia, chronic fatigue syndrome, Sjogren’s syndrome, and many others.

I repeatedly asked the doctors if my illness could be due to the tick bites I got at my home after being in the tall grass and forest area behind our house. I became extremely sick shortly after discovering the ticks and thought this was something that should definitely be investigated.

Unfortunately, my Lyme diagnosis came much later. Untreated Lyme disease is a huge problem for a growing number of people in America.

Reporter, Linda Simmons from KY3 News interviewed me about my experience with Lyme disease. You can watch the interview here.

My Doctor Said, “You Can’t Get Lyme Disease In Missouri.”

Unfortunately, I was told, “You can’t get Lyme disease in Missouri.”

At the time, I was naive to believe that doctors are always right. Of course, like the rest of us, they are only human. Now, out of necessity, I’ve learned how to advocate for myself as a patient.

I started doing my homework. And asking the right questions.

The teacher in me. And the life-long learner that I am…It didn’t take long to figure out that, in this case, a wait and see approach was not appropriate.

With Lyme disease it never is.

I persisted in my quest for answers. Finally, the proper tests were given that proved they were tragically wrong.

You can indeed get Lyme disease in Missouri. And I had it.

Suffering From Untreated Lyme Disease & Forgiveness

I did, in fact, have Lyme and other potentially deadly tick-borne illnesses, tularemia, and Rocky Mountain Spotted Fever (RMSF).

Since then I have met many caring physicians who are indignant when they hear I was given the run around for so long without proper treatment, especially when the doctors knew I was bitten by ticks and my health continued to go downhill so quickly.

At the time, my primary care physician simply told me that I had “tick fever”. (I was never clear about what that is and no one ever explained beyond this.)

Later, I returned to this doctor because I wasn’t getting better. I was, in fact, getting much worse. He said I looked “stressed” (perhaps from the constant pain and insomnia?).

Then he suggested I watch a YouTube video about the benefits of walking.

In my naivety, and my strong desire to do everything possible to get healthy, I did as he instructed. Unfortunately, I was unable to walk further than my driveway due to severe air hunger, heart palpitations and extreme weakness and fatigue….all symptoms of Lyme disease!

I don’t believe these doctors meant to harm me even though going so long without a diagnosis did just that. I believe they wanted to help me and were doing the best they knew with the knowledge and tools they had.

Although I’ve had to work through difficult and strong feelings as people do in life, I have no ill will towards them. (For more on this, please feel free to check out The Shocking Truth About Forgiveness And Your Health.)

I do, however, hope these doctors (and all medical professionals) make concerted efforts to learn more and keep up on the latest about Lyme disease so others don’t have to suffer needlessly too.

If this happened to me it could happen to you or to your loved ones. And I would never wish this horrible disease on anyone! That’s why it’s important to me to share with you to help prevent other people from going through what I, and thousands of others, have.

I was suffering with Lyme disease & my body was rapidly deteriorating for months before doctors were able to diagnose me with Lyme disease.

Finding A New Normal After Lyme

Although life is very different for me now, I’m finding a new normal and constantly working to learn more and become as healthy as possible. I’m so thankful for a supportive family and friends. Practicing gratitude helps me focus on all the good in my life because I have so much to be thankful for

In some ways, life is actually better because I’ve learned to slow down and bask in the moment. Whereas before I was always multitasking, running from one event to the next.

I’m learning to live in the moment. Although I lived a pretty healthy life before, I’m much more conscious about making healthy choices now. I’m more in touch with my body now. I (usually) don’t push past my limits like I used to. (Bad habits are hard to break.) I also try to manage my stress better instead of ignoring it.

Healing has been a gradual process. But I’m thankful for every gain and positive change that has occurred. I’m not well yet, but I’m stronger than I was a year ago. And that’s definitely a positive in my book!

Related: 10 Proven Benefits Of Gratitude That Will Upgrade Your Life

Want to learn more?

I created a Lyme resource to help answer your questions. The guide provides you with:

  • more details about Lyme and other tick-borne diseases
  • valuable information on diagnosis and testing
  • where to find financial help for Lyme patients
  • prevention tips
  • instructions for how to properly remove a tick
  • and more…

all based on research. Simply click below to check it out.

Summary – Untreated Lyme & Life Lessons

Suffering from Lyme disease, then finally getting a diagnosis has been a prolonged and painful process. But God has brought me through and strengthened me through the suffering and trials, and He can do the same for you.

If you have a chronic illness, don’t give up! There is always hope.

Do you have a chronic illness? Can you relate? What tips can you share to help others? 

Please share your comments and questions below in the comment section. I’d love to hear from you!

Avril Lavigne just released a new song (Head Above Water) this week about her battle with Lyme disease. It’s both powerful and beautiful. The first time (okay, 5 times) I heard it resonated so deeply with me that I had tears streaming down my face. You can listen to the YouTube version below:

You might like to read the following for help and encouragement if you or someone you love has untreated Lyme disease or other chronic illness:

2 thoughts on “Undiagnosed & Suffering With Lyme Disease: I Felt Like I Was Dying”

    1. Hey there, PJ. To answer your question I could write a book but I’ll try to sum up the basics here. 🙂 Then if you have more questions feel free to email me at healthylife@lorigeurin.com.

      Like many/most of us with chronic/late-stage Lyme, I’ve tried many things to get better. I’m much improved from when I wrote this article, but I’m still dealing with flares and health issues, many of which relate to autoimmune diseases that were triggered by the Lyme.

      If you just contracted Lyme then doxycycline is the first course of action. But, as I mentioned in the article, when someone has Lyme and isn’t diagnosed/treated right away the bacteria has the opportunity to settle into any and every organ and system in your body…making treatment more complex.

      After my diagnosis, about 2 years after I contracted Lyme, I started on a course of doxycycline. Then, under the care of a Lyme-literate doctor, I eliminated gluten and started eating a Paleo diet. My doctor prescribed antibiotics and combinations of antibiotics known to fight Lyme and tularemia – another tick-borne illness I was diagnosed with. I didn’t take them all at once but took one or two at a time in specific combinations as laid out in the treatment plan. I took the ABX for about a year then stopped because my body needed a break from all the Lyme killing and herx reactions caused by the die-off.

      I then learned about the Lee Cowden herbal protocol and did that for 9 months. For me, I saw more improvements with this than any of the other treatments I’ve done. You can find it at Nutramedix.com. If you decide to go this route, email me for some extra info I can give you to help you save money.

      I’m currently on a keto eating plan my doctor recommended. Plus, I started The Wahl’s Protocol yesterday. I’d recommend reading this – it’s full of great information that can help anyone with chronic or autoimmune issues.

      Intermittent fasting has become a passion of mine because of the awesome health benefits. It’s helped with brain fog, hormone regulation, inflammation, and pain and cured my reactive hypoglycemia.

      Detoxing your body and life is also a crucial piece of the puzzle because you have to get rid of the die-off from killing the Lyme bacteria. Check out my post, 15 Simple Strategies To Detox Naturally, for help with this.

      For me, the natural route has been the least intrusive option, but I understand the role of ABX too. I wrote a post called 21 Simple Strategies To Fight Lyme Disease Naturally that covers tips for healing naturally. You may find it helpful.

      Also, exercise is healing. I’ve been moving gradually in this area, rebuilding muscle that I lost, plus strength and endurance to do everyday tasks. I’m thankful to be able to walk 2-3 miles now, but I know that when I do I need a few days to recover so I do a lot of planks, yoga and stretching.

      Give yourself grace. Focus on gratitude. Get plenty of quality sleep. See food as medicine. Move more. Eliminate stressors or find better ways of dealing with stress. These are all essential to the healing process.

      I hope my (long) short answer here gives you a starting point. My best to you on your healing journey! Please let me know if you have other questions. I’m happy to help.

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