Hi! Yes, I'm still here and still in the midst of this bad crash. I do think I've made some progress and am improving, but slowly.
Quick recap: I went into a severe crash/relapse about 7 weeks ago. This has become extremely rare for me, to crash for any reason at all and especially this bad. In all of 2017, I was only crashed for 3% of the time (11 days)!! I reduced - almost eliminated - post-exertional crashes by treating my Orthostatic Intolerance (OI) with low-dose beta blockers and did the same for virally-triggered crashes by treating the immune dysfunction at the heart of ME/CFS with a variety of treatments. I've been in pretty good shape the past few years - not cured, by any means (I still need my afternoon nap & have limits), but much better and living a fairly active life.
So, this crash seemed to come out of nowhere, and it took me awhile to figure out what was going on. One weird recurring symptom - a twitching muscle in my eyelid - finally tipped me off that the crash might have been triggered by my Lyme disease recurring (Lyme often causes weird neurological symptoms, and I've had this one before). Sure enough, I started treating Lyme again - after about 4 years in remission - and experienced the tell-tale worsening (Herx reaction) that confirmed my theory, with other typical Lyme symptoms re-emerging, like knee pain. That was abut a month ago, and I am finding that I have to proceed very slowly with the Lyme treatment, as I am Herxing pretty badly this time around. That, along with my son's continued struggles with treating his 3 tick infections, made me read a book on Lyme disease and do some more research into the best ways to treat Herx reactions. It turns out that even after 8 years of dealing with this, we still had more to learn!
Herx reactions (worsening) occur not only when treating tick infections but also when ME/CFS patients treat viruses with antivirals or sometimes even when treating yeast overgrowth with antifungals (and treating mold toxins, too). Learning how to properly manage Herx reactions will not only help you to feel better and function better but will also help you to make more progress in knocking out these underlying infections that are often behind many of our symptoms.
So, my Managing a Herx Reaction post is newly updated, with parts of it completely rewritten. I have added new treatments to the list and included dosage information for all of them. This now accurately compiles all of our hard-earned knowledge in one place...but please let me know if I missed anything that has worked for you!
I feel a little better today, though still achy and with some knee pain and lower energy than normal, so I am hoping that I will continue to improve bit by bit and soon get back to my "normal" baseline.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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