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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi @GlassCannonLife I'm so sorry to hear about your crash and hospital visit. I tend to agree with Judee about the hydrocortisone. While PWME often to have low cortisol and feel better with replacement,40-60mg hydrocortisone is above what the body would make physiologically, so if you are on that dose and still have crash symptoms, I would venture that the symptoms are due to more than adrenal insufficiency. That isn't to say a higher dose can't be helpful to suppress inflammation and an overactive immune system, jump-start the engines a bit, increase blood sugar, but at that point, it is a very pharmacological effect beyond what the body would normally do and isn't sustainable without some negative effects. Of course, if you feel it is helping, we do what we need to to get through a crash. I think you know it can't be stopped suddenly.
Are you still testing positive for COVID? It seems that even "normal" people who get COVID can pass through a couple of weeks of intense fatigue before turning around. I imagine COVID fatigue compounded on top of ME fatigue is just crushing. Anyhow, if you are still testing positive, do you think trying to get ahold of some Paxlovid would be worth it?
These are probably thoughts for another time, but pregnenolone In addition to being the "mother" hormone" is such a neurally active steroid with mechanisms on multiple neurotransmitter receptors, looking at those actions may help you find other things that could be useful. I'm guessing your pregnenolone receptors have down-regulated quite a bit atm due to the large amount of pregnenolone that must be circulating in your system, making it harder to get the same previous response.
Sending you my best wishes to feel better soon. I wish I had a magic bullet, I wish I had one for all of us.
I don't know what's wrong.
But anyway, look up adenosine plus your symptoms.
But now with all the hydrocortisone not helping (and cumin helping a bit), it makes me think it must just be my ME.. But what do you do when you start to vomit and pass out and start to get numb arms and face? Have to call the ambulance right..?
@Wishful , have you encountered anyone having rebound PEM from cumin?
Thanks, but I spoke too soon.. Up to 500 mg pregnenolone now and just took a tsp of cumin as well.. Doing IV now.
and just took a tsp of cumin as well.. Doing IV now.
I read that as: "IV cumin". "Mainlining curry".
You're doing some pretty drastic chemical changes (mostly the pregnenolone), so drastic swings in symptoms severity are likely. You might need to taper off the pregnenolone and see what sort of severity you stabilize at. Cortisols aren't something you want to take long-term. Also, it may simply stop working for you. When I first tried prednisone, it gave me complete remission, but the symptoms returned after tapering off. The second trial had the same effect. I tried it twice again, later, and it had no effect on my symptoms. That's just how many treatments work with ME. So, if higher dosages of pregnenolone don't work for you, there's probably no point in taking it (and suffering the downsides).
Do you mix the cumin in something before taking it?Thanks, but I spoke too soon.. Up to 500 mg pregnenolone now and just took a tsp of cumin as well.. Doing IV now.
Struggling to stay positive.. Worried that I'm just super severe now and just haven't realised it yet or something..
Good, glad to hear you are seeing improvement!Doing ok atm.!
Yesterday only took 500 mg pregnenolone during the day (woke up in the night being a bit crashy and took it at 1 am), then took 100 before bed but skipped cumin.
Last night slept pretty well finally, had a few moments where I woke feeling a little weird in the chest etc but managed to sleep and not medicate. This morning have taken 450 mg pregnenolone (trying to split to have more in the evening and less in the morning). Have had a few moments of high hr etc but feel pretty stable.
Going to keep resting completely and see how I go tomorrow morning etc. Meant to do another IVC tomorrow, which should help even more hopefully. If I can stay completely stable on this dose then I'll try dropping 50 from my morning dose and keep everything else the same.
But luckily seems like the worsening finally stopped overall and I am stabilising..not to jinx it lol but yeah.