Cycles of Symptoms

one of the big challenges in this illness is directing your own treatment decisions

i am self treating and found that i could only reliably interpret the various flares /reactions to treatments/reactions to dietary changes, changes due to sleep cycles, or general upticks or improvements in symptoms if i kept a detailed log of what interventions i was making and was going on in terms of symptoms and responses day by day - and tracked that over time

i was truly amazed at how much clarity this brought vs constantly guessing and second guessing what might be going on.
so often when things did not go as anticipated ( as often happens with this illness ) - or a mystery change in symptoms occurred - i was able to back track in my tracker and find what the cause was.

i tend to think graphically and was used to charts so it was pretty natural for me to do that - and may not be as easy for others - but in terms of understanding what is causing what changes in symptoms, and understanding the results of the many different trials i have done to try and move myself forward its been absolutely indispensable.

in addition - i use this tracker to measure the things that for me represent the best markers of overall health - which are in my case things like improvements in fatigue - and how much i can get done in a day
this has to be done carefully to have value - as if all measures are subjective then you end up mainly measuring what your mood is like rather than your actual progress - so i use measures like
-how many tasks i managed to do each day
-how much sleep i managed to get
-how much exercise i was able to do
-how fast my daily walk was
-how early i was able to get going
( these are all objective measures - so less susceptible to bias than feelings )

it has been the single most helpful tool in my toolbox to direct my treatment and lifestyle changes - without it i do not think i would have been able to make meaningful progress as for me there have been no miracle cures - only a series of lifestyle changes and layering in treatments that i have continually adjusted and optimised over the long term to gradually recover.
it allows me to see what works and what causes herx reactions - but then works in the long run - and to track progress over time - see snapshot below
VIEW IMAGE

if you are in the care of a trusted LLMD - then i think you can hand off responsibility to them for directing your care to a large degree - they have seen hundreds or thousands of cases - so this often works

but for me - there are no trusted LLMD's in the UK that i know of - the GP's and NHS are clueless and nervous about lyme and completely in teh dark about Bartonella - and so i am forced to self treat.

doing this on your own is very challenging indeed - especially if like many here - you are not a fast responder to abx and where tracking such gradual changes in your head alone is near on impossible

i would thoroughly recommend anyone attempting self treatment adopt some form of this approach

hi Everbark

sure i could make a generic blank sheet that would plot graphs as data was entered - but for it to have value it really has to be individualised to a surprising degree - and this requires some careful thought to make relevant measures to each person - and make those meaningful in terms of capturing metrics that matter to that person - and repeatable so that they do not drift over time

that is actually where most of the work is - a sheet that plots graphs is 10mins work - and adding a days data is only 10 -20mins a day once the sheet is set up - but it takes some thought to decide what you wish to measure - and how you will score each thing that you measure

take my fatigue example

you might think a person might just want to record how bad they felt their fatigue was that day - give it a number and be done
but if a person tries to do that - in 6 months time how confident are they that what they score as 6 / 10 for fatigue today - is the same as they scored 6/10 6 months ago -
in reality our perception of it drifts around from day to day as the feeling of fatigue is entirely subjective

pain is exactly the same - if not more so -

in fact most things we are interested in with lyme are like this

that means we need to get creative in using objective measures that ARE repeatable and can act as proxy for what we are trying to measure - if you see what i mean

for me fatigue is the main issue - and so most of my measures are tailored around that - and my interventions ( also in the sheet ) are also tailored towards that

for another person it might be pain - or digestive issues - or lack of sleep

for another - it could be falling asleep all the time

so i am concerned that a generic sheet would not really add value in the way i describe - and in the end not really be worth the effort for people filling it out

if you had some ideas that would make it more generic / useful to more people i would be open to that
or
if you would like, i could work together with you to help you make a sheet that is tailored to you

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btw - for anyone who is interested in doing this - but does not have Microsoft excel or a PC - google sheets is a free online app that can be used from any device (even a phone at a push).

i am aware that my mental function is slower than it was before becoming ill - and i did have problems with conversation and word finding when i was at my worst - but in general i can do most things i could do before - just more slowly - and have to be careful not to overdo mental exertion - otherwise thankfully my mental functions have been relatively unharmed.

i haven't looked into measures - but i would guess that there are some free "brain training" apps for smartphones that could be used to give some measures -
there will also be IQ tests online - which, while you can argue are not necessarily measuring intelligence - they should at least provide a repeatable measure of problem solving ability.
if its memory that is a concern - there are also short term memory tests - which for instance ask the participant to recall an increasingly long sequence of random numbers

again measures chosen will kind of depend on what particular flavour of impairment is most troubling in your individual case

again let me know where i can help

happy to continue the conversation here

do so via skype or zoom

in the mean time - here are some general rules i have found useful to help construct my tracker

1- i track both outcomes - for instance in terms of symptoms severity that i experience each day - but ALSO interventions - in terms of things like treatments i am trailing - supplements i am taking - dietary changes etc etc
this is vital - as one of the most important things is to try and understand what intervention might drive which symptoms

2 - use a sensible scale for all metrics - say 1 to 10 - or convert the raw metric into a sensible scale with a scaling factor - this makes everything fit on one chart

3 - make sure all metrics are acting in the same direction - i.e. 10 is good - or 10 is bad - not a mix of both (this makes it much easier to combine metrics for say an overall score - that can then be used to track overall progress)

4- to prevent drift over time - write down a scoring approach for each metric - eg for sleep - it might simply be the number of hours of sleep you got last night - for energy - it might be how many tasks you managed to do that day - perhaps divided by a scaling factor - but you will likely have to further define what constitutes a task that scores 1

5- if things have not been stable - track a period without new interventions for a while - a few weeks - to serve as a baseline of what is normal for you in your tracker - so that deviations from this norm can more easily be interpreted