Ray - you sound like me sometimes in trying to find root causes of something when a couple of variables are introduced at the same time, even when you can’t control them or are things you don’t track (weather , daily hydration or salt/sugar/vitamin/caloric breakdown etc). I recently moved to a new state & doctors, and one that I really admire (cardiology) has a very strict medicine protocol he insists works and wanted me to start right away. I’ve been doing pretty well on the old stable meds I have been on for 20 years but he insists I can actually improve a bit and it would be so beneficial for total health. With all the idiopathic frustration we have with our Neuropathies here, I am very excited to have a doctor with ideas of actually improving something with my health! But, it involves taking me off TWO long-use medicines and replacing them with THREE somewhat newer drugs (so new that insurance companies won’t pay, but the pharmaceuticals have programs that you only pay $10) Anyway, I trust him, but we had to compromise; medicine changes and side effects can be difficult for me to adjust to and I fear how they can have the unintended consequences of somehow impacting the Idiopathic Neuropathy life I’m trying to balance and maintain. So we agreed to do the new 3 vs old 2 swap in a couple stages, giving me time to adjust to the first phase and hopefully feel good about being able to analyze any possible cause and effect to my TOTAL body, before proceeding to the second phase and taking time to analyze and adjust to that stage. Then we can test his things after 3 months of the total changes so we can see if his cocktail is having the intended outcome.
I know it’s not on the quicker timeline he hoped, but you know how difficult and long it takes to understand the cause and effect of anything on our mysterious idioneuropathies. In you trying to isolate and understand EB-N5 effects, you’ve made vs me think about trying not to introduce any variability of other factors during this time. I can’t control the weather but need to keep exercise and activity consistent, and though I’ve been advised to increase water consumption, I need to watch dietary changes. Outside of locking us up in a lab and have someone perfectly control the experiment, it’s pretty tough isn’t it?