So, since Phoenix Rising is now my community, and since I spend hours here every day learning- wanted to share my update.
4+ months into current "flare" and I'm much better than I was, knock on nearest wood
Mostly housebound
Able to work 2-3 hrs per day from home, several days/week
Praying to the HR pantheon that I can keep this job despite hardly ever showing up for it...
Able to tolerate very short walks outside
So far I'm "only" on basic nutrition supplements & mito supports, plus an adrenal support, but collectively they are all really helpful and I've gotten quite a bit better than I was without them.
(reduced neuro symptoms, POTS, & fatigue)
I started NAC 1200 mg/day recently- David Wheldon reports that NAC can cause CPN die off reaction
http://www.davidwheldon.co.uk/NAC.html
and, ta da! I am having interesting flu symptoms.
Interesting because they're not as bad as the primary illness back in March was (thank you), and because they're transitory- they seem to move around my body, sinuses to hip joint to lymph nodes. I tell myself they're attacking CPN in its hideouts --but who knows.
Also, I've tried 5 min in Infrared Sauna (very strong die off reaction! lasted 15 hours) and DRY BRUSHING.
I would have thought dry brushing was a woo-woo thing but no, it actually works. I had a very strong reaction to that also after a very short initial session.
I hope to continue both of these--- in small doses. Right now NAC is kicking me plenty.
Meanwhile the naturopath has advised starting Lauricidin and so that is next up.
Here's the fun part, right?
Test results! Finally some super fun abnormal ones came in (after months and months of tests).
these were ordered by naturopath but just for, yes, fun I did ask the infectious disease doc to review.
Chlamydia pneumoniae
IgG 1:32
IgM 1:160 (dubious award from naturopath of highest she's ever seen)
HHV6
"12.44" IgG antibodies
I don't understand this reporting protocol but their index is positive is anything >0.99
Lyme western blot
2 abnormal bands on IgM, 1 abnormal IgG
Of course, infectious disease doc thought all of these were bogus, especially Lyme since ELISA was negative.
When pressed she admitted that they probably indicated some kind of tick borne disease, "maybe a rickettsia or an ehrlichia" AS IF I REALLY CARE WHICH ONE she doesn't think I have.
Thanks to advice from @Learner1, and the many recommendations on this site, I got started with 23 and me, am ordering NutrEval and .... just made a September appointment with Dr. Kaufman.
I am so grateful to everyone on this site for sharing what you've learned- I can't imagine struggling alone with this condition, whatever the heck it is.
4+ months into current "flare" and I'm much better than I was, knock on nearest wood
Mostly housebound
Able to work 2-3 hrs per day from home, several days/week
Praying to the HR pantheon that I can keep this job despite hardly ever showing up for it...
Able to tolerate very short walks outside
So far I'm "only" on basic nutrition supplements & mito supports, plus an adrenal support, but collectively they are all really helpful and I've gotten quite a bit better than I was without them.
(reduced neuro symptoms, POTS, & fatigue)
I started NAC 1200 mg/day recently- David Wheldon reports that NAC can cause CPN die off reaction
http://www.davidwheldon.co.uk/NAC.html
and, ta da! I am having interesting flu symptoms.
Interesting because they're not as bad as the primary illness back in March was (thank you), and because they're transitory- they seem to move around my body, sinuses to hip joint to lymph nodes. I tell myself they're attacking CPN in its hideouts --but who knows.
Also, I've tried 5 min in Infrared Sauna (very strong die off reaction! lasted 15 hours) and DRY BRUSHING.
I would have thought dry brushing was a woo-woo thing but no, it actually works. I had a very strong reaction to that also after a very short initial session.
I hope to continue both of these--- in small doses. Right now NAC is kicking me plenty.
Meanwhile the naturopath has advised starting Lauricidin and so that is next up.
Here's the fun part, right?
Test results! Finally some super fun abnormal ones came in (after months and months of tests).
these were ordered by naturopath but just for, yes, fun I did ask the infectious disease doc to review.
Chlamydia pneumoniae
IgG 1:32
IgM 1:160 (dubious award from naturopath of highest she's ever seen)
HHV6
"12.44" IgG antibodies
I don't understand this reporting protocol but their index is positive is anything >0.99
Lyme western blot
2 abnormal bands on IgM, 1 abnormal IgG
Of course, infectious disease doc thought all of these were bogus, especially Lyme since ELISA was negative.
When pressed she admitted that they probably indicated some kind of tick borne disease, "maybe a rickettsia or an ehrlichia" AS IF I REALLY CARE WHICH ONE she doesn't think I have.
Thanks to advice from @Learner1, and the many recommendations on this site, I got started with 23 and me, am ordering NutrEval and .... just made a September appointment with Dr. Kaufman.
I am so grateful to everyone on this site for sharing what you've learned- I can't imagine struggling alone with this condition, whatever the heck it is.
