Uncategorized

A Long-Awaited Answer

I had planned to write up a little post about how wonderful our camping trip to Aspen was, butttttttttt I actually have an update on my health (Whaaaaaat?!). So if you were really looking forward to reading about me staying awake all night because I kept thinking I was hearing a bear, I’m sorry to disappoint!

 

You guys…I have a diagnosis!

 

Before I get any further into this, I have to be honest. I legitimately almost didn’t share this victory with any of you. I fretted over it and debated and went back and forth, but then I figured I’ve been pretty transparent here on the blog up to this point. Why stop now?

 

The reason why I doubted if I should share is threefold.

 

1- I received a clinical diagnosis (based solely on symptoms and medical history, as opposed to lab testing) of Lyme Disease and Babesia. Some form of Tick-Borne Relapsing Fever is also suspected.

 

I am well aware that I would be laughed out of many physician’s offices if I were to tell them that. And I am painfully aware that there are people, even some of my closest friends, who won’t necessarily believe that this is an accurate diagnosis because of the lack of blood work to prove it.

 

Believe me, I’d like to have a definitive test result too. Hopefully I will in 4-6 weeks. In the meantime, though, I am trusting my LLMD (Lyme-literate physician). She feels very confident that this is what we’re dealing with, and I myself have long thought that Lyme and co. were the culprits.

 

2- Lyme Disease has been stigmatized and politicized, and those who suffer from it have been ostracized and taken advantage of. There is so much drama and misinformation surrounding Lyme Disease and its co-infections. Navigating the overwhelming maze of opinions, facts, and opinions parading as facts is scary and confusing.

 

“Lyme Disease doesn’t exist in this state.”

“Lyme can be treated with 2-4 weeks of antibiotics.”

“Late-stage Lyme can’t be cured and patients will need antibiotics indefinitely!”

“Your Western Blot test came back negative, so you don’t have Lyme.”

“You need to buy tons of really expensive herbals from me for the rest of your life.”

 

A quick Google search will turn up page after page of conflicting information on how to diagnose, treat, and heal from Lyme and co. Patients (myself included) have been shrugged off for years by physicians when they mentioned Lyme Disease. Those of us who are persistent and eventually receive a diagnosis are labeled as “Lyme Loonies.”

 

Please don’t call me a Lyme Loony.

 

3-    I myself am truthfully afraid to get my hopes up. That’s not to say that a diagnosis of Lyme Disease and co-infections is a dream come true for me, but a diagnosis validates all of my struggling. These symptoms aren’t in my head! I’m not making it up! And what’s more…there’s hope that I could one day lead a normal life again! (I guess that is kind of a dream come true…)

 

But also, given the amount of time that I’ve spent outside, in the woods, in tall grass…I guess I shouldn’t be surprised.

This was actually taken one week before I started running a fever. We hiked 6-7 miles that day, and despite the fact that I was still adjusting to the elevation, I felt amazing!

The fact of the matter, though, is that I’ve been diagnosed several times now. Mono, Adrenal Fatigue, Leaky Gut, Walking Pneumonia…and all were incorrect. Each time I was diagnosed, I cried tears of relief (once while I was still in the exam room with the doctor), thinking that the wait was over and that I could begin healing. Inevitably, I found myself crying again several months later when the proposed treatment didn’t work and the doctor wrote me a referral to yet another specialist.

 

Stronger though, than the urge to hide for fear of being labeled a Lyme Loony or having my hopes dashed publicly is the desire to potentially help even just one person. If my honesty through this process can aid one fellow undiagnosed spoonie in their quest for answers, it will be worth it. If I can be an encouragement to a single soul, it will be worth it. This is all a part of the process: the uncertainty, the waiting, the fear, and the frustration. It’s a part of the process that isn’t usually talked about, but should be. And if my test comes back negative, then that’s a part of the process too, and I’ll talk about it, just like everything else.

 

In the meantime, I would really appreciate your prayers as I am starting a detox protocol to prep my body for the harsh treatment that is to come. Healing Lyme is a long, hard road, but I know that the Lord is faithful and that He has a plan to turn this disaster into something beautiful.

To stay up to date on all things caterpillar, subscribe below!

Save

Save

Save

6 thoughts on “A Long-Awaited Answer

  1. Oh man. I totally relate with everything you said. It’s so vulnerable to share a Lyme diagnosis! But I’m so appreciative you did. I’m so sorry to hear this is your battle, yet I’m so happy for you that you know who you’re fighting now.
    I’m just about to share about the start of my treatment so we’ll have to compare notes 🙂
    We’re in this together!!

    1. Yes, I remember reading your post when you shared your diagnosis as well! I was moved by your transparency, in spite of the fact that you were still processing so much. We are absolutely in this together! Not fighting alone!

  2. I can certainly identify with the things that you’ve mentioned here, having been recently diagnosed with tickborne illness myself. I agree with your perspective as far as seeing this all as a process, and I think that sharing our stories for others to see can be part of that healing process. You are not alone in this! <3

    1. Yes, I really feel that being able to share about my journey openly has been healing in so many ways! I hate that you’ve been diagnosed recently as well, but I am glad to have you and others like you to share in these hard experiences with. A burden shared is a burden halved!

  3. I still remember the day I was diagnosed and the tears of joy I cried to finally have an answer. You are so strong for not giving up and for being so vulnerable! I truly believe that is the only way to change the perception of this tragically misunderstood disease (well, diseases). So thank you …and now your road to healing starts. Sending you healing thoughts and prayers. You’ve got this.

    PS I know we don’t know one another but please feel free to reach out if you ever need someone to listen without judgment. I know how scary and lonely this battle can feel… 💕

    1. There is not another feeling in the world quite like having all of your weird symptoms and suffering validated simply by having a name for them! Thank you for the prayers and well-wishes and also for simply being there. It is such a good feeling to know that even when I feel lonely and isolated, that there are people who have been where I am and who will listen to and fight alongside me.

Comments are closed.