Lymies Need More Help and Attention

Surrounded by a sea of unknowns, drifting in a boat of loneliness. Questions loom and swirl like the torrent of a hurricane. The winds whisk us away to a place of torment. Pain, fear and suffering bounce off our boat like a thousand tiny rainy drops, saturating our every waking moment. Uncertainty swallows us up and sucks us into a black hole of despair. We search aimlessly for the light, stumbling through the storm until it spits us out. Traipsing in a vast desert now, hoping for an oasis. It must stop? It must get better? The hopelessness leaves us untethered to reality, floating through each day. We’re Lymies, and we need help and attention. Throw us a line and drag us back to shore.

Some help and attention over here please!!

When my husband and I learned of my positive Lyme disease diagnosis we were beside ourselves with fear. We quickly learned that finding information about this chronic illness was like searching for a needle in a haystack. The lack of readily available medical information for Lyme disease left us feeling helpless and alone. The sheer onslaught of crazy symptoms and herx reactions was terrifying. I was too scared back then to be angry. The anger I feel now acts as a compass, guiding me towards a better future for all of you. Before I share the following blog post with you, please allow me to preface it with the following…

I avoid writing about topics like this. Largely because I am here to offer you love and encouragement by sharing my experiences, and my path to wellness. I strive to be a light in your darkness by letting you know that you are not alone. That being said, I don’t take this post lightly. I have learned from Brene Brown that sharing needs to be mutually beneficial. Otherwise, it’s unloading your emotions onto an unwilling party and breeds distrust and disengagement. I never want to instill those feelings in you. With that in mind, I write this today with you in my heart. I imagine that you are likely as frustrated as I am by this situation. So, with that caveat in place, here goes my rant.

We shouldn’t have to seek medical advice from our peers

Lyme disease is a potentially serious and debilitating illness. It may not be as deadly as cancer or heart disease. However, left untreated it will slowly strip you of your life. The loneliness that surrounds Lyme patients doesn’t have to exist. The unknowns are suffocating. The uncertainty is paralyzing. When I read questions like the ones I share below, I want to curl up into a ball and weep. Then, I want to stand up, dust myself off, don my superhero cape and run straight to Congress screaming for help. Where is the funding for research? Why are so many doctors ignorant regarding diagnosing and treating Lyme disease and its co-infections? Why in the world is treatment not covered by insurance?

These are largely rhetorical questions, as I know the incredibly frustrating reason, but that doesn’t assuage my anger. In fact, it serves only to stoke the flames. We shouldn’t have to resort to seeking medical advice from peers! The answers shouldn’t be buried in red tape. Every day I read questions from my fellow Lyme warriors that break my heart. After they break my heart, they fill me with anger…

“BRAIN INFLAMMATION AND RESTLESSNESS — Hey! I’m hoping for a suggestion of the best, most potent herbs for the above symptoms specifically.”

“Best lab to order Lyme testing from? I did Igenex years ago and was positive, but was not sure if there was a better option out there…now testing my children.”

“Since diagnostics are so difficult and tests so unreliable, can you use a herx to a specific herb as a test? In other words, if you are healthy, you can take as much JK as you want without a reaction…something like that.”

“Currently at 1x per day for protocol. Moving up to 2x per day. Do we increase binders to 2x per day as well?”

“I have Babesia and I am having a hard time breathing. Any recommendations?”

“Do you know which herbs treat both borrelia and babesia? To hit both at once?”

“I have allotted $5,000 to treat my Lyme disease…what do you recommend I take?”

“Can I meditate away my Lyme disease?”

Random selection of actual questions on different Facebook support groups.

Our healthcare system is broken, and we suffer from it

I am angry for these individuals. We have a broken healthcare system that Lyme patients suffer from drastically, every day.

For some reason, Lyme disease is shrouded in mystery. Hell, simply finding a Lyme literate doctor to treat is a burden we shouldn’t have to carry. Most doctors have no idea how treat it, thus leaving us all woefully at risk for a lifetime of pain and frustration. A Lyme disease diagnosis should be treated with the same level of urgency you would treat a cancer diagnosis. Or heart disease, multiple sclerosis, Parkinson’s, etc. Otherwise, your life will slowly evaporate until you’re left with nothing but a shell of the person you used to be. Society at large should be well aware of the gravity of undiagnosed, untreated Lyme disease. As it is now, only our peers understand the true suffering of a Lyme warrior. They don’t understand what my doctor told me…that treating Lyme disease is worse than treating cancer.

Nobody other than a Lyme warrior can relate to what a herx feels like. You can’t understand how scary brain fog is until you get lost in your own house. There are no words to express the shock of Lyme rage. They can’t understand the weight of exhaustion that pulls at every limb, muscle, tendon and bone. The fear that bubbles to the surface when you experience air hunger. A battle of seemingly utter hopelessness that toils on, day in and day out, for years. That lack of understanding from our family and friends is a lonely place to live. Nobody should have to suffer alone.

Peer to peer, I love you, I see you and I will continue to stand by your side

My anger and frustration is borne out of a love for all of you. I know what you’re going through. After all, I’ve been through it myself. And I know that it shouldn’t be this hard. The battle itself is hard enough without the added burden of finding a physician capable of treating you. We shouldn’t be seeking out self-diagnoses from our peers. No one should have to stumble around in the dark in search of a healthy, happy life. Unfortunately, that is where we find ourselves.

Okay, rant over. Again, I leave you with a message of hope because I can’t sign off without extending my hand to you. These struggles only make us stronger. One day, you will look back on this time and see the superhero warrior that you truly are. When you watch yourself get out of bed every morning, despite the pain and isolation, you’ll wrap that part of you in a warm hug. In fact, I encourage you to hug yourself right now. You are worth it. Keep fighting!! Continue to reach out and know that you are loved by your fellow Lymies. Keep asking your questions. We will do our best to help you. I will do my best to help you.

For any of you reading this who are the caregivers for a Lyme warrior, we need your help and attention. Spread the word. Talk to your congressman. Share the stories of what you witnessed or are still witnessing in the life of your loved one. This disease is not self-treatable. We need doctors who understand our needs. And, we need more advocates like you.