Whisper in my ear but don’t call the cops

“You’ve got my trust and that’s a fact
but please be careful how you act
Drop the jury, leave ’em home
I won’t be judged – only known
My dark side” – Mike Scott

I started a new protocol two weeks ago to treat Bartonella, a co-infection associated with Lyme. On paper, this looks much simpler than the 5 months I just finished (one of the most aggressive treatments).  I responded extremely well to this, was feeling human (then that enters the question, do I even want to be human?) and functional, definitely on the up!  A couple days into this new treatment plan, I started *herxing really horribly. Please send help.Herxing, for those who don’t know, is specific to Lyme (and also syphilis ) – it’s a die-off of the spirochetes due to meds (western or herbs). It’s die-off and toxin build up that your body can’t release fast enough and it makes your symptoms come back and come back worse usually, sometimes bringing in new symptoms. It’s pretty hellish. There are some things you can do to alleviate some of the discomfort (infrared sauna, epsom salt, glutithione, etc). But it can last days to months and it’s quite variable. I’ve never had one last this long. I’ve been constantly nauseous, either puking or wanting to. My back hurts, my ear hurts, my tinnitus is unbearable, my neuropathy is freakishly debilitating, migraines are back the list goes on. The nausea is a new symptom for me , which is making me just not eat and/or hate food completely.

I’ve herxed in the past and it’s been real unpleasant but fairly short-lived. This time is a different situation. Most of my symptoms came back right away and it’s been a hellish couple weeks physically. But I also feel like I am losing my mind. I blamed some very difficult life stressors, untimely PMS that wasn’t quite right, etc, but none has made enough sense. I felt like I really snapped (actually sort of frightening) and almost debated if I needed to check myself in somewhere. I told the electric company woman on the phone something I shouldn’t have and waited all day for the cops to come to my house for a welfare check or to arrest me. I almost broke one of my windows. Seriously was going to sell my photography gear. Other things I won’t go into. Because then YOU might call a welfare check or the cops. Lyme is stupid.  (below: I’m mostly sane and happy with the cat-boyzzzz)

Maybe I’m too open and honest. But not enough people are. At least it’s one thing I pride myself on.

Anger. Lyme rage. It’s a thing.  Go forth and google if you you want. Before I knew I had lyme, anger management is something I worked on. A lot. Herxing right now is bringing it out.  A lot of it. My old go-to was running many miles,  or beating the hell out of my punching bag. Neither which I can do right now. Which invites more anger. If you know what’s best for you, you will not tell me to meditate.

Thank you to a fellow chronic Lyme friend, Mike,  for telling me that neuropsychiatric herxing is a thing and that’s what I’m going through- on top of the physical herx.  I will be getting in touch with my LLMD on Monday and let him know I can’t deal with this one particular med. It’s just one med! After being on so many hardcore things, this one antibiotic is making me super ouch.

Ugh. Gross. But also, a relief. But also, shit. This sucks. Lyme sucks. And all this sucky shit just brings back my anger at the shit-ass doctors who could have SHOULD have prevented all of this.

Like I said, anger. Lots of it. Lyme Rage. Lots of it. I’m allowed. I’m entitled, even.

Here’s a fun Lyme thing I haven’t talked about publicly yet since people love to be judgmental and slap their own bullshit stamps on things that they know nothing about.

One of my symptoms is auditory hallucinations. This is directly related to hearing loss, which is directly related to the infection from Lyme or Rocky Mountain Spotted Fever (again, thanks to the double digits of fucking so-called medical professionals who missed this and now I’ll never regain this. I hope you all rot in hell, you pieces of incompetent bloody shit piles). Is that harsh? Offensive? I don’t care. What’s offensive is the way I’ve been treated by these failures of people.

Anyway. The auditory hallucinations I get are not things of nightmares. They are glorious and fantastic and I wish I had them all the time. I was getting them nightly before I started treatment and then they stopped. I have them again now that I’m herxing. And I welcome them with wide open arms.

Hey Jill? What do you hear? Pray tell.

I hear radio baseball games from the 30’s and 40’s. It’s comforting. It’s nostalgic. It’s exciting. I love it. I was hesitant, for months and months, to tell anyone, to tell any of my doctors, including my therapists about this, because of the stigma. Then I did and no one was concerned. Again, lyme and hearing loss related. When I told my mom, she reminded me that my grampa played minor league baseball in the 40’s. I had totally forgotten this and and it makes the whole thing even more nostalgic and comforting and meaningful and noteworthy. Really, I hope these never leave me.

Despite the quote that I started this blog with, I don’t have trust with many people, because too many people have broken me and proven themselves to be hell people this last year. I’ve been hurt by too many people who claimed to love me.  So my boundaries are alarmingly high these days and if you’ve read the above and want to think that because I have auditory hallucinations, that it’s a psych issue, I invite you unkindly to go to hell and remove yourself from my life. Dickshitters are no longer welcome here.

I also realized I have Mast Cell Activation Syndrome. Very common with Chronic Lyme. Makes sense why certain things are making me throw up within minutes and give me stupid rashes or hives or freakouts- the water allergy (oh yeah), I can’t eat certain foods anymore- sugar gives me migraines I’ve learned, even some hypoallergenic stuff and certain fabrics are making me lose my ever-loving mind. I’m still trying to figure a lot of this out and need to be better about writing everything down. But it’s not fun, it’s annoying and frustrating and difficult.

Writing about the frustrations is necessary for me and once again, I thank my parents and friends for being there for me. (I randomly saw this photo of 17/18 year old me and sweet Waggy who also was 17, so here it is ). 

3 Replies to “Whisper in my ear but don’t call the cops”

  1. Fabulous piece of writing, Jill. You are a hero. Thanks for sharing your experience. I’m here for you if I can ever be of any help. No thoughts and prayers bullshit. Just virtual brain hugs.

  2. Simply put…you are not alone …no one can suffer thru this the same as you but your parental are with you every minute of every day with hopeful healing thoughts , prayets,prayers, and virtual hugs. Please remember that every moment and our phones are open to calls 24/7.

  3. Wow, powerful post, Jill. Once again, all of these symptoms are new to me. I had no idea. I wish I could somehow help you, give you some kind of magic potion or at least some affirmative or soothing words to lift your spirits while you’re experiencing both the physical and psychological effects of Lyme and its treatment. You and my daughter are probably close in age, and also share different but difficult medical issues. Sometimes the only thing I can do for her is to hug her and hold her. I don’t know if that helps her or me the most, but it is comforting. I send you a mental “hug” and will pray for comfort for you. Blessings!

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