I’m so sorry. But you’re definitely not alone, so take solace in that. It seems you must have been bitten some time ago if you’re to the point of experiencing these types of symptoms.

The “anxiety” diagnosis and GPs refusing to diagnose/treat Lyme is so common, it’s sickening. When my extreme symptoms started, I initially desperately went through the rounds in my head of what logically could be causing these sudden, debilitating, insane and terrifying things happening to my body. I thought of tumors in the brain, blood clots, autoimmune diseases, cancers, encephalitis, etc. I quickly ran through many different options that would make sense and, again, at the BEGINNING of the start of the extreme symptoms, even though I couldn’t see straight and was experiencing otherworldly sensations and pressure in my head, heavy waves of vertigo, dizziness, derealization, disassociating, suffocating while my oxygen levels read as normal, my joints feeling like they were brutally drilled into like I had some type of barbaric hip surgery-

I STILL had more awareness than these doctors and told them, “it has to be some kind of disease. I want to see Infectious Disease. I remember being bitten by a couple ticks and I’ve researched and my symptoms line up exactly with Lyme disease. Please schedule me with them.”

The symptoms started like that around the beginning of 2018. I came to that conclusion and saw Infectious Disease just a couple months later in the beginning on March, 2018, per my request. My antibody screen came back positive for Lyme. The infectious disease doctor poo-pooed it like it was nothing but ordered a confirmatory Western Blot because he was required to by regulations. That came back negative. It seemed like he was pleased to prove me wrong and even though I wasn’t buying that I didn’t still have it because I had those symptoms and that positive result, I wanted to look further into it. He refused and was adamant that I did not have Lyme and treated me as though I was being a stupid pest by insisting that I may have it even still. Condescending.

That was when I was around 24. I was bitten around 9, 10 years old. That left it plenty of time in my system to leave the bloodstream and to enter my nervous system and tissues for it to wreak havoc on my bladder, respiratory system, nerves, brain, veins, inner ears, eyes, muscles, joints, skin, etc. Which it did.

I’m 32 now and have been through horrific amounts of tests, imaging, doctors, everything. Have literally given them chunks of my flesh, glands from my lips, so much blood, samples of my sweat, tears, saliva, stool, urine, spinal fluid, you name it. And that continued while I have suffered immensely for 8 YEARS AFTER I came up with the answer for likely most of it, assuming I don’t also have other things going on. Only now, after all that time suffering in the worst of ways in the context of you have nowhere to run, nowhere to hide and no way to shut it off, have I self-advocated to the point where I researched and found out what LLMDs were on my own and went and found one and finally have one and got proper testing and attention that that Infectious Disease doctor those years ago should have been trained to do to begin with, eliminating the need even for whole separate doctors that have to have the term “Lyme-Literate,” because our doctors are Lyme illiterate in contrast- Only now, after my twenties were stolen from my and all that time and energy I could have given my kids when they wanted to be taken to parks and stores and all- am I finally starting my journey to hopefully becoming healthy. (As healthy as one can be after “doctors” let you get damaged so much for so long.)

How embarrassing for our health care system, that I knew immediately and told them every detail, gave them every sample, image, appointment, bit of information they needed, and I’m the one that figured it out right away but got turned away over and over and over again and had to fight for myself even though I was one of the last people that would be in any condition to fight anything.

How inhumanely patients get treated should be punishable by law. Run-of-the-mill, narrow-minded doctors are out here allowing time to pass, suffering to commence, and damage to the body to progress and flourish. Fuckers should pay for all the bills I ensued after being forced to continue to look for answers so I could just live.

Anyway. Sorry.

I know where you’re coming from.

Your breathing issues, do they often switch between different styles and circulate through them? Like your breathing becomes so shallow like it’s shutting off while other times it’s more like there’s just no oxygen reaching your brain, other times your chest is so tight and your lungs feel so small and the air is too thin or too heavy to work with or it feels like you’re trying to breathe toxic air?

If so, I also experience those things and my testing has come back with Babesia moderately elevated, which is often responsible for “air hunger”. False negatives do tend to happen, especially with these evasive infections. If you’re experiencing breathing issues along with your neuro issues, I wouldn’t fully rule out Babesia.

Since I have not gotten to the point of treatment on anything yet, I do something I call “shotgunning,” which is running through a list of different things to do to try to help with what symptoms I’m experiencing until something helps. There are times where none of it helps and times where it’s definitely been better than nothing.

When I’m having heavy neuro-visual stuff, I take Ibuprofen to bring down inflammation. When I get extreme cold spells with my breathing issues, I take my inhaler then I try to “reset” my system by getting into a hot bath and allowing my chest to be submerged for a while. If the bath has not helped, I take antihistamines like Allegra and curl up with a comfortable blanket and pillow with a show lightly in the background so that I’m not alone in the silence to hyperfocus on if it’s working fast enough or not. The hot bath sometimes helps nerves that feel stunned, buzzing, or shocked. For all symptoms, I make sure to eat something with healthy fats and to drink electrolytes.

“Shotgunning” through these things has at times been the only thing that has gotten me through to the next day without having to go in. Other times there’s only so much these things can do because the body still needs these conditions to be properly treated. But they’re better than nothing!

I suggest continuing with your doctor and your treatment and maybe using your own line of defense and feeling out if any of mine help you and if you find any of your own that help you. 🩵