@garzie - phoenix rising PEM posts that I wanted to share

Maybe you've seen this.. But a member Wish has achieved near PEM remission just from cumin. Others seem to be finding benefits as well. Unique results IMO


https://forums.phoenixrising.me/threads/cumin-cuminum-cyminum-possible-pem-blocker.56232/
https://forums.phoenixrising.me/threads/my-fatigue-is-gone-my-poisoned-feeling-gone-pem-what-pem.84337/

right - I'm back - i finally waded through both of those threads - thanks again for the link Loski

i am not at the stage where i get intense PEM reactions any more

i have got a lot better at managing it for one thing - so i know what i can do without getting PEM ( or much PEM) and rarely step much outside of those limits to try to avoid the horribleness that follows - so its been a while since i had the real nasty - "i have to lie down in a dark room till it passes" type feelings.

i also seem to have improved a lot through the course of my treatments in terms of what i can do physically before it sets in - the last time i had it from something physical like working on my car - for 2 full afternoons in a row - was around a year ago - and then it was super achiness, extreme sore muscles and tiredness - but not ill exactly

mental exertions like driving and socialising seem to trigger it still but its less extreme now - so rather than lying down for a day afterwards - where i am at now is more that if i make a trip away for the day to see family - which is a 1.5hrs drive each way and a few hrs socialising then the next day i will typically be v tired - and have increased sore head feelings for a day afterwards - and more or less recover by the day after that.
but, if i tried to do this two days in a row - or say do 2 days at work in a row - i would defo get much stronger effects - so its still limiting in that sense and it would be amazing if i could find releif from that as it would open up the path back to work - so i am very interested in this....

any aerobic activity also seems to trigger PEM for me - like running even 100yards
but i can currently do a 45minute workout with weights and am adding a few reps each time i do it and thats going pretty well - some days i do feel like its pushing me close to a PEM type attack - fatigue and sore head starts to kick in - but so far i have escaped any serious ones

i think these workouts or driving are the two areas where i would likely feel any PEM reducing effects of Cumin seed - so i have started taking 1 level teaspoon ( one level 5ml scoop - weights around 2.25g ) of freshly ground cumin seeds with lunch each day to see what effect if any i can discern by monitoring closely over the next week or so. i just knock it back and wash it down with a small drink of water.

i noticed a slight digestive disturbance after the first day - but it seems tolerable

before this i was having a bit of an off week for reasons i cant quite make out - just a bit below par - nothing serious - but i can report that now on my 3rd day of cumin i am back to around my best - and did my best workout since getting ill last night ( these were improving most times i did them anyway ) but we can say that the cumin certainly docent seem to be hurting.

i read some of the studies - cumin's mechanism of action seems to be linked to suppressing the NFkB pathway from being triggered by bacterial antigens like LPS - this is interesting as it could well fit with the mechanism the triggers herx reactions - same pathway being activated inside macrophages i think - and could provide a possible explanation for reducing PEM in CFS/ME - if it is indeed caused by chronic kidney infection releasing endotoxins - by blocking the inflammatory pathway triggered systemically by these toxins in patients blood.

interesting stuff

will report back in a few days

will do

yes - i think its essentially blocking the inflammatory pathway driven by LPS and other microbial antigens - so it may work better for some antigens than others - or some individuals than others based on their genetics

my trial is ongoing - i think i might have been having some mild benefit - but its been a bit interrupted as i have what feels like another bout of COVID - causing more of the same stuff i had last time - sore throat, sore head, disturbed sleep, aches and pains - its very like a herx reaction so i was a bit confused until the sore throat and bit of a cough turned up.....

its a bit annoying as i have hardly been anywhere in weeks - went to see family just over a week ago so could have been there i picked it up - other than that i have been living like a hermit for months.

thanks Loski

i had zero colds for 6 years after getting ill - but have had 3 in the last 6 months since getting significantly better - so i think its just that my immune system is reacting more normally now - and i actually get head cold symptoms -

whereas in the past i think my immune system was either so ramped up in the wrong ways - that i just didn't get them - or i did get them but the symptoms were not the normal cold symptoms as my immune system did not mount a normal response and instead i just had more general fatigue - which blended with the ups and downs of the illness and so i never knew.

so i think its actually a good sign in a way - much as i hate colds - especially when i was on a good run - working out and making progress - but hey ho

i also think at least 2 of the 3 i have had were actually COVID - lost of smell etc - so i actually had only v mild cases each time - so count myself pretty lucky - this time could be another covid variant - not sure - feels remarkably similar to the last bout i had - may try a lateral flow test if i can face the horrid tickly swab thing.

it also occurs to me that i have been living like a hermit for the last few years - very little contact with the outside world - so immunity will taper off from lack of contact with viruses - and when you go back out there its perhaps no surprising that i am susceptible

i don't think its allergy related in my case - i have zero sneezing or allergy like symptoms in between these respiratory virus bouts - so it seems pretty clear cut for me.
do you think in your case it might be allergy related - or do you think the antihistamines are somehow adjusting the immune system ?

thanks for the tip - i use ashwaghanda also - have bene taking it in tincture form for a few years now - seems good but mild - i also like eleuthero and Rhodiola - all adaptogens - and i take a tonic dose of all three of these

thanks for the thoughts and observations Loski

so if i understand you correctly - you feel like picking up a virus is perhaps triggering a MCAS type reaction in you and kind of driving an unusual course of illness to the virus with prolonged sickness vs normal course - and the antihistamines seem to help quell that unusual reaction

that certainly seems possible to me - as these viruses cause an acute flare in inflammation
and that could be a MCAS trigger for those that are sensitive.

my guess is everyone with chronic infections typically has some degree of additional mast cell activation - but not necessarily the extreme type that reacts dramatically to every minor stimulus so may not need direct treatment.

for me its more like a flare in my existing symptoms
-headache / sensitivity
-body ache
-sleep disturbance
-fatigue
- this started a week before the sore throat, cough and phlegm turned up so was confusing at first - but now its clear its just a respiratory virus as they seem to do this every time

Glad you’re seeing a benefit! I’m not sure if I’ve found it useful or not. In general I feel I’m noticing improvements but I’m contributing it largely to my protocol as a whole. I actually got a part time job. It’s from home and paced work load but I see things coming together instead of falling apart helplessly. My symptoms seem to be much more variable now and more textbook Lyme with body aches and fatigue that comes and goes whenever it decides to.

Perhaps my extract isn’t adequate or it’s just not of huge help for me. I’ll probably mess with it still but I find ketone aid to be more useful mid day.