self-care in lyme disease – dealing with the anguish when medicine makes you worse

As someone who has had to deal with this (and the ramifications of this) upwards of 7 years now, I hope this is the least-read article on my blog. I am sorry you have to deal with this. I stand with you and I want you to know that it’s okay to say “this absolutely sucks lollipops.”

Usually when you get your diagnosis (usually first diagnosed as fibromyalgia, a mental illness, or M.S.,) you have a breath of hope. Okay, this sucks. But at least I have an answer.

You start the treatment, usually the run of the mill doxycycline/minocycline/whatever else that ends in “cline” and you start to feel it.

The shakes. The nausea. The bone-deadening exhaustion that throws your emotions and brain in a tailspin. The panic. The anger. and the pain that gets worse with each pill.

You angrily ask yourself perscription after perscription, side diagnosis after side diagnosis, and deficiency after deficiency…


Why am I not getting better?

Isn’t this the point of antibiotics? to help? to kill? to heal? What the absolute ever loving heck am I doing feeling like this?

You try more and more ‘miracle cures,’ ayurvedic treatments, and diet than you care to count on two fingers. You might get co-infection diagnoses, autoimmune dysfunctions, or fun sideshows like POTS (postural orthostatic tachycardia, you can read more here.)

We grit our teeth and bear it, because what choice do we have? We have to be warriors, moms, wives, and daughters through the collapse of our own bodies because there is no alternative. We have to hop from doctor to doctor, waiting to find someone who knows what they are talking about, because we just want to get back a fraction of who we were before we got bit!

We don’t often consider the psychological fallout that is preparing to debut on stage when we exist in this cycle of shoving down, keeping on, and “no really, I’m fine, I always almost puke on the couch at home too. May as well be out, right?”

We don’t take the time for self care because we are already in the mindset of ‘treatment will make me worse.’ We are naturally following the human response of avoiding pain and taking it out on ourselves, internally, because no one else is living with it like we our in our bodies. And we get so angry at that.

Please, don’t fall into the trap of going until you burn out and become unrecognizable to yourself. There’s steps to take to do self-care even in the middle of the storm of treatments that put your body through the rigors of chemo-like symptoms.

Realize, first off, that the medicine they are giving you is not to help necessarily. It’s to kill. Your cells are literally being perforated and attacked, so the drugs have to do a clean sweep and kill those stupid spirochetes.

For me, I had to actively picture that over and over when I wanted to quit and rip my piccline out. I was in a very dark place for years. I understand.

Realize, that because your body is a literal war zone, you need to nurture and nourish it in other ways. I’m going to have a cross post to a list of super foods for Lyme disease up shortly so you can reference that. Eat what you can, when you can. Don’t push yourself to vomiting, but your body needs fuel to fight. You deserve that to give yourself. 

Drink, even when it hurts to. Even when it makes the nausea worse. Flood your body to take the trash out of your cells. You’ll feel a little clearer. 

Reach out, even when you’ve been rejected. Not everyone is shallow. You will find someone to relate to and to walk through this with. For me, initially and consistantly, it has been my mom. 

Be disciplened. Don’t let yourself fall too deep into the depression that the treatments bring. Realize the neuro effects like the anxiety, anger, and panic are the body purging itself and a side effect of the spirochete die-off. Don’t let it become your personality and do activities to ground yourself so it doesn’t take over completely. I used to…

-Journal or write poetry. Someone will need to hear your story to pull through their own. 

-If calling a friend is too much, pray. Even if it’s the broken prayer of “God, please help me through this. I can’t do this anymore.” or even, “God, please.” “God, help me.” He still wants to hear you and don’t believe differently. 

-Make bracelets or bead/craft art. Anything that brings some color and light in and makes you feel like you’ve done something for the day, even on those days you can’t change your shirt. 

-Sit on your porch and put your feet in the grass. Focus on the sensations going up through your feet and run your hands in the grass. 

-Wrap yourself in a blanket if you have the shakes and make some detox tea, or even hot water with lemon if you aren’t tolerating much. Be careful with honey, as this may cause die-off/herxing depending on where you are in your treatment.

-Start a Pinterest Board or a Hulu account to take your mind away from the moment. 

You can always reach out to me too on the contact section of the blog. I am always here to talk to.

This is an encouragement post for you. If you’re going through the nasty side effects of the treatment to kill the Lyme, whether antibiotic or natural, its absolutely brutal. It’s okay not to be okay. Just remember to take care of your mental health first.


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