I'm sorry you're still struggling with this cppoly.
I think sleep is one of the hardest issues as so many factors can be a play. I've tried a lot of things but mostly just working on the infections is the only thing to make a lasting improvement. My sleep still isn't great (although it's now functional) and it's pretty fragile (anything can set it back). I'm at the two year mark now, I might have gotten here faster if I'd recognized mold was an issue for me.
I'm just going to throw out bunch of random thoughts in case any of them help.
I would definitely look into other factors at this point and/or other treatments.
Mold would be at the top of my list for sure. Personally I would do an ERMI on my house, I was quite surprised by the results when I did mine and working on mold has really helped for me. I suspect the reason that my sleep isn't better is because I can't really escape exposure right now. I never noticed a difference being away from home so that isn't enough to go by imho.
Bed - many people affected by mold talk about
sleeping on a pile of blankets (because they're washable) and it's been in the back of my mind to try this to see if my probably toxic mattress is affecting me. I have a lot of organic cotton blankets I've sewn over the years (with organic cotton batting). I think these would work great over a slatted futon frame or an air mattress. It seems a cheap way to see if it helps rather than forking out for a pricy mattress.
Sleep study - have you done one yet? I don't think they would be able to help since the idea that insomnia could be caused by infections wouldn't be up their alley but it might help to have more information about
what you're experiencing (alpha intrusions or what not). It might also be worth considering getting a sleep med prescript
ion at this point as lack of sleep could be affecting your healing. I sometimes worry that some receptors in the brain that affect sleep could be permanently affected (I believe this can happen to alcoholics) and I wouldn't mind talking about
things with a specialist. Most people with lyme seem to report getting over sleep issues so I don't think we're out of luck I'm just wondering what all the possible mechanisms are.
Herbs - do you herx at all with the herbs you're taking? I didn't have a lot of 'feedback' in this way about
what was helping me as I only reacted to a handful of the herbs. I needed to take quite high doses. You might need to talk about
this with your herbalist. You might also want to explore other herb combos aside from Buhner, Byron White? I'm drawing a blank on the other one people like, to see if they work better for you.
Blood tests - I remember you had some blood tests that you were following that seemed to track your progress. How are those going? I'd like to be able to get more blood work done myself - CD57, CD4 (for bart, I can't get it here but I think it would be helpful), c4a are on my list.
If anything else comes to mind I'll let you know.
Bullseye rash 2013.
Following Buhner since July 2017.
Recovering from mold.
Post Edited (sandyfeet) : 8/26/2019 11:05:51 AM (GMT-6)