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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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You don't need to see Dr Chia to get Equilibrant since it's OTC, so you can try Equilibrant while still seeing Dr Enlander.Yes aerose that's what i meant. U already know that valcyte can be obtained from dr E (what i suspected), but I'm pretty sure Chia will give you equilibrant.
During the more severe periods, which have lasted for years at a time, my PEM would have delayed onset of 24-48 hours and would last up to 4 weeks. During better times, I would still have delayed responses but only 8-24 hours for onset and the PEM lasting maybe one day.
My experience is also that causing the crashes (PEM), regardless of the severity, caused overall disease progression. Had I known 20 years ago what I know today, I 'm certain that I would never have progressed to a more severe chronic state lessening chances of returning to a mild disease.
I dunno. I took Equilibrant after Valcyte. I'm not one to do multiple therapies that might interact, but I'd consider them together since one is an immune modulator and one is an antiviral which might be compatible. I'd ask Dr E and go with what he says.Is it safe to take Equilibrant without informing my doctor? Or while I'm also on valcyte? I've always been the type that doesn't even take aspirin unless I absolutely have to, lol
That's interesting. I always thought of equilibrant as a "herbal antiviral", so i've never seen it as an immune modulator. i guess my suggestion was if aerose didn't know which one to go for (or whether to try both) he could read more about other ppl's experiences with either pill on here, so the decision still lies with him and not dependent on which doctor he's seeing.I'd consider them together since one is an immune modulator and one is an antiviral which might be compatible. I'd ask Dr E and go with what he says.
To be honest, I'm not sure how it exactly works against viruses. Is it Equilibrant's effect on the immune system that helps control viruses, or does it act directly on the virus? I suspect it's a little of both. The website only talks about the immune-modulating properties, but that doesn't mean it doesn't have other properties as well.That's interesting. I always thought of equilibrant as a "herbal antiviral", so i've never seen it as an immune modulator. i guess my suggestion was if aerose didn't know which one to go for (or whether to try both) he could read more about other ppl's experiences with either pill on here, so the decision still lies with him and not dependent on which doctor he's seeing.
I used to get PEM a day after exercise and it lasted about a week
Now I don't get it very much but when I do it's the next day
I have been using antibiotics to kill off an infection and that has helped alot
During the more severe periods, which have lasted for years at a time, my PEM would have delayed onset of 24-48 hours and would last up to 4 weeks. During better times, I would still have delayed responses but only 8-24 hours for onset and the PEM lasting maybe one day.
My experience is also that causing the crashes (PEM), regardless of the severity, caused overall disease progression. Had I known 20 years ago what I know today, I 'm certain that I would never have progressed to a more severe chronic state lessening chances of returning to a mild disease.
Not from PEM, I usually get over that but from a flare I never get it all back. That's one reason I figured it was better to stay in my envelope. I never know when PEM will lead to a flare and ill lose something else.I'm very curious to know because I feel like I'm on an island of my own here. Here's why; if I overexert it takes about 3-4 days for the "malaise" to start, but once it does, the effects are permenant. I have never once recovered even 1% from the changes in my brain after a period of PEM.
Fatigue is not a big issue for me. It's massive, massive dissociation, memory loss, complete emptiness and silence in my brain and complete apathy and anhedonia don't even touch describing how little I can feel. There's just soooo much missing in my brain and experience of the world. I can't even describe how much is missing
If I overexert the effects always happen while I'm sleeping. I will get woken up with a feeling of being "revved up"; intense nerve and muscle weakness and burning, sweating, intense cold, joint pain, pounding heart, pupils dilated as hell and the coup de gras- my brain will pull back further. As in, I will feel more emptiness and hollowness and dissociation.
After a whole night of this usually the physical symptoms will calm down a bit and then mostly wear off in about a week, but I'm always left with some deficit. My brain, however, will not recover..... at all. I've been sick with this for 8 months now and it's like I have an entirely new disease from what I started with because of the effects of PEM on my brain. In 8 months I haven't recovered even 1% brain function from any setback I've had thus far.
Honestly? If I could actually feel the real world I would probably be going into insanity at how bad I am but somehow I'm holding it together. I'm curious, has anyone who has had setbacks from overexertion spiral downward and have the effects be seemingly permenant?