How I'm Tracking Symptoms...

Hi, all. Man, this treatment process is a struggle, and I've found myself being very impatient and down-trodden lately. I guess I'm a bit of a control freak and I'm not used to having something in my life over which I just don't have much control...and I'm sick of not being able to live my life as normal. As of two weeks from now, I will have been diagnosed with Lyme, Bart and Babs for one year, after about 23 years of off-and-on symptoms (many times going as much as 5 years between flares). I knew it would be a long haul, but it's still hard.

So, my newest step in trying to satisfy the control freak in me and help me see progress/track patterns is to track daily symptoms (listing my worst symptoms only), and I rate them 0 = no symptom, 10 = worst the symptom has ever been. Also daily, I write down my LLMD- and LLND-combined treatment regimen. I've chosen to leave other vitamins/supplements/food/physical detox methods out of this for know, although I take about 35 'things' on top of the below, do dry brushing, coffee enemas, foot detox when I can, and epsom salt baths when I can... If I find I'm not getting ENOUGH information from the below, I'll add them too.

Anyhow, I have seen several people wanting to more closely track symptoms and asking for tools to do so... Below is what I've started, and it is in excel spreadsheet format (which doesn't paste well here). Anyhow, just thought I'd share one idea for how to do it. It's a highly personal thing, and yes, symptoms vary even throughout the day...but I choose to keep the granularity to the day level and just track the worst point of any given symptom that day.

If this helps you, you're welcome to it.

Best Regards and good luck...and may you all be keeping it together a little better than I am right now!

Treatment/Symptom 16-Aug 17-Aug 18-Aug
A-Bab 1 drop 1 drop 1 drop
MC-BAR-1 2 dr 2x/day 2 dr 2x/day 2 dr 2x/day
Toxex 2 dr 2x/day 2 dr 2x/day 2 dr 2x/day
Renelex 15 dr 3x/day 15 dr 3x/day 15 dr 3x/day
Itires 15 dr 3x/day 15 dr 3x/day 15 dr 3x/day
Plaquenil 200 mg 200 mg 200 mg
Nystatin 4 tabs 4 tabs 4 tabs
Biaxin 1000mg 1000mg 1000mg
Bactrim 800mg 800mg 800mg

R Knee Pain 6 7 5
R Knee Swelling 6 6 5
L Knee Pain 4 4 3
L Knee Swelling 4 3 3
R Ankle Pain 7 6 5
R Ankle Swelling 5 5 4
R Foot Pain 6 7 6
R Foot Swelling 3 3 3
L Foot Pain 5 4 3
L Foot Swelling 2 2 2
R Hip Pain 2 2 2
Upper Back Pain 6 7 5
Lower Back Pain 3 5 2
R Wrist/Finger Pain 3 3 3
L Wrist/Finger Pain 3 3 2
R Elbow Pain 1 1 1
R Elbow Swelling 2 1 1
Nausea 6 3 4
Hot Flashes 4 0 0
Chills 2 0 0
Eye issues 3 3 3
Tinnitus 3 3 3
Fatigue 8 7 5

Total score 94 85 70

I think it will be helpful at least for me...to see my overall progression and maybe keep morale up a bit as I see numbers improving! It's more difficult to do that when every day it's something...some symptom causing a real issue...but really, over time, there IS improvement. We'll see how it goes.

If I add symptoms, I will just insert a new line into the list for the excel but leave the numbers for all the dates blank up to the day I add the new symptom...so I can tell exactly when a new symptom popped up as opposed to an ongoing symptom having a score of 0. And I imagine if a sx is at 0 for long enough, I can cross it off the list too. At any rate, we'll see.

Yeah, it is a lot. For me, though, it's something I can feel like I'm actively doing, since so much of this process is just waiting for things to work and to feel better. And so much of it is a mental game too.

Hi. I don't post much, but wanted to chime in with the link to a basic and free app that can be used to track symptoms and see a graph of your progress. I have no connection to the app at all, it was just something I came across in my never-ending quest for Lyme info.

http://app.symptomgrapher.com

I am hoping that I can still access it when I have to travel and be away from my home computer. Can't see why not.

I've noticed a few limitations so far. You can't see the data from the previous day when you're adding new info, so if you think you've had two days in a row the same, you have to remember the previous numbers. Otherwise, your graph can have some pretty wild ups and downs. Mine is pretty crazy but still shows general trends.

You can't change a number once it's entered (and after you see the wild fluctuations on the graph).

You can only enter data once per day. So if you forget something, it can't be added later.

You have to add new symptoms BEFORE you enter the info for the day, otherwise it can't be added later.

It's not perfect, but it is another option and it's pretty quick and easy.