The Lyme Survival Guide

Hold onto your butts! This is my current medication, vitamin & supplement list, and how I keep track of it all.

IMG_3896.JPG

Other than “What are your symptoms?”, my least favorite question to answer is “What is your current medication list?”.

I immediately feel a wave of exhaustion come over me knowing there’s no way to answer it all on the spot, it’s going to take a long time to list them all, I’m not going to remember everything, and I don’t want to! It’s too much to just casually answer.

So I started keeping a printout of all my supplements and meds in my purse, and I try to keep it updated right before I go to a new doctor or appointment.

My current Lyme med list as of writing this post:

med list image

Why are there so many?

To many people this seems like an ungodly amount, and to me too, lol, but lemme explain why I’m on all these – because at first glance you might think my doctors just love to torture me, or are just throwing everything at me haphazardly. They are absolutely not. This list has been adjusted, subtracted from and added to on a monthly basis for years. It has taken years and years to find what works, what doesn’t, what causes side effects, what causes me to herx, what the bugs react to, what my symptoms react to, and is constantly evolving as my illness and diagnosis evolves.

Some of these meds are specifically taken to target the Lyme bacteria & co-infections, some are taken to relieve my symptoms, some are taken to relieve side effects from other meds (though thankfully not many cuz that’s a depressing cycle that’s very murky to wade through) some are taken to reduce inflammation, some are taken because of the secondary illnesses Lyme has caused, many are taken to build my immune system, and so on and so on…

I’m not using this post to go into all the details of why I’m on each item. I’d like to at some point, but instead wanna focus on how I manage all of it.

pink hearts
 
My system for managing all these meds
pink hearts

I was not expecting to have to manage so many meds, side effects, allergies, etc. when I first started my Lyme treatment, and quickly realized I needed to find a way to keep track of it all.

It’s more than just having a list. You need to keep your records constantly accurate to show when you started the meds, when you stopped, how much you’re on, when you changed, any side effects, any notes you want to remember, any instructions you need to follow, etc. This is not just for you, it’s for your doctor to know if there are any other things your other doctors have put you on, if there’s anything you stopped because of side effects, it’s for any new doctors so they know exactly what you’re taking, and to avoid taking something you already tried. It’s for hospitals if you have an emergency, it’s for medical leave paperwork, disability paperwork…

Finding a method that works for you and that is realistic for you to use on a regular basis is essential. Yours might not be mine, but through a lot of trial and error this is what works for me.

Here’s my routine of managing my many medications & supplements:

Private WordPress Page

I did not intent to blog about my Lyme journey when I first got my WordPress site for it. I actually purchased this WordPress theme I’m using now so I could use it to manage my illness. I needed something that would allow me to create my own custom taxonomy, something that was easy to hop in and out of, and something that I could access from my phone so I could pull up info during doctor appointments. I tried a bunch of different apps and google docs, but ultimately fell into using WordPress as my primary tracking system.

This is what the backend of a WordPress site theme looks like.

My most important private page is my Supplements & Meds page:

private page

Whenever I get a new med (btw I’m gonna call all my medications, supplements and vitamins “meds” so I don’t have to write that out every time), I open up that private page, and add it to my list, in this format:

Medication Name

  • Brand: 
  • Ordered from: 
  • Cost: $
  • Type: 
  • Serving Size: 
  • Instructions: 
  • Schedule:
  • Symptom Tracker:
    • mm/dd/yy – Day One – 
    • mm/dd/yy – Day Two – 
    • mm/dd/yy – Day Three – 
  • Notes:
    • mm/dd/yy –
poop

Here are a couple real med records (not gonna lie, a little embarrassed to show you my notes about Malarone, but I wanted to show that one because it’s a good example of a more complex note, and let’s be honest – everyone poops ).

It’s so important to record with as much detail as possible, because:

  1. Lyme Brain makes me forget everything so I can’t trust my memory.
  2. Lyme treatment is very lengthy. Over the course of your treatment you might start and stop the same medication several times, across months or years, and they may have differing effects on your system at different times (because of the state of your body at that time of taking it, because of what other meds you’re on, because of herxing, you name it).
  3. Every time you take anything new, whether it’s a medication, a vitamin or a supplement, it’s important to give yourself 3 days with that one new addition, so you can clearly tell if you get a side effect from it. Sometimes I might be adding several new meds a month, several days apart, and without my notes I would not remember if my upset stomach came from new med #1 or new med #4.
  4. Recording everything makes it easier to recognize patterns of how your body reacts to similar types of meds.
  5. If you have an adverse or allergic reaction to a medication, your Lyme doctor might take you off it, but a future doctor might suggest it, not knowing your past with it. Especially with allergic reactions it’s dangerous to forget, and you also don’t want to waste time, money and awful side effects on a medication you’ve already tried.

In addition to my WordPress private page, I duplicate each med in a more simple format in Google Sheets, as shown in the printable PDF screenshot above. I don’t like having to record it all twice, but it’s been working pretty well for me now that I’m in the habit of it.

Bucket o’ Pills

IMG_4467.JPG

I literally keep everything in a bucket. 🙂 It makes it easier than just shoving into a drawer, and takes up way less space. Plus, when it’s time to refill my pill organizer I bring out the bucket, take everything out onto the table, and as I fill my organizer I put the bottle back in the bucket. That way I know for sure I’ve added everything, and haven’t accidentally added something twice because so many of these look alike I wouldn’t be able to tell just by eyeballing the pill.

Two Pill Organizers

IMG_8432.JPG

About 6 months ago I graduated from 1 pill organizer to 2 because of how many things I take each day. I love these dudes. They’re cute, colorful, and they stay closed (unlike other ones I’ve used that pop open in my purse). They’re separated by days so if you are gonna be out of the house for the day or going on a weekend trip, and don’t want to take the entire week’s supply, it’s easy to separate them out.

I got these, like everything else in my life cuz I’m obsessed!, on Amazon: 4-times-a-day organizer, 3-times-a-day organizer.

Lil’ Instruction Labels

IMG_8155.JPG

Pill instructions are sooo annoying. Especially when they’re constantly changing. I’ve got too many to memorize, and I don’t like having to dig up my lengthy patient plan or medication directions each time, so I started adding instruction labels to every med. It makes the weekly pill organizer replenishment process much faster.

Keep & Reuse Empty Bottles

As I’m refilling my organizers, if there are any meds that are empty or will run out before the next weekly refill I set them aside so I don’t accidentally put them back into the bucket. Then I go through and reorder online or through my pharmacy.

A big lesson I’ve learned is to keep the empties! Here’s why:

  1. Sometimes an Amazon order gets delayed, or cancelled, or there are pharmacy mistakes, or I got interrupted during my refill process and thought I reordered something I didn’t. This means I can’t go on faith that once I finish my weekly refill process I can throw the empty away, because if I don’t get it by next week and I don’t have the bottle in front of me I might forget to follow-up or that I’m taking the medication at all. It actually happens pretty frequently, so keeping the empties have helped me a ton.
  2. I have the lil’ instruction labels on the bottles, so I actually like to just reuse the bottles instead of rewriting all the labels each time I get a refill. So when I get a new bottle of meds, I open it and pour the contents into the empty that has the label on it.

And… I think that’s it! 🙂 Phew! I did it!! My full medication, vitamin and supplement tracking process. I hope my method of madness helps you too! 🙂

1 thought on “Hold onto your butts! This is my current medication, vitamin & supplement list, and how I keep track of it all.”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s