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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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I did not say remission you did. I am recovering and am 99% normal. I manage my dysfunctional immune system with a CB2 agonist, caryophyllene. Given the nature of EBV (latent virus) what I am doing is possible what you suggest likely not.
Imagine getting better and then knowing what would happen when you stop the treatment and become less again, then come back then go, rinse and repeat. I have been through a lot to get here and stable.enjoy that!
I'm the opposite- I am puzzled that merely six years ago, I'm writing a 185 page report.
And now can't really make it through a single paragraph
Strangers Things, and an upside down world feeing.
I use caryophyllene and I source it from Copaiba essential oil. I use it sublingually so it can reach my brain and nervous system without my liver metabolising it and making it unusable for the specific target I am targeting which is CB2 receptors. These are expressed across many immune cell types. I also take it in gelatin capsules (5-6 drops) to target more of the body but specifically the gut which is intimately connected to the brain, nervous system and ME/CFS symptoms.Hi, can you share your treatment with me? Thanks
Hi JES I have replied to treeman so see that post also about the treatment.Same question as above, is this something you find in a supplement?
My experience is almost the same as @Wishful . I only managed temporary remissions that were honestly what felt like full remissions. With any supplements or drugs, the effects tend to get lost over time for me.
You say you are 99% normal, so forgive me for asking more questions, but can you provide a more exact timeline of how long this recovery took and can you be sure it was all attributed to caryophyllene if it happened over a longer period? And if you are 99% normal and you feel you are still making progress, that suggests you still have symptoms left, correct? And finally, provided that you would stop taking caryophyllene tomorrow, do you reckon you would relapse back over time?
For the past 9 months or so, I have managed to reach a full recovery with absolutely 0 ME symptoms or limitations on my functional capacity. Saying that I'm back to where I was pre-illness is a bit of a stretch as I was doing 16 hours of competitive gymnastics a week before I became ill. Getting back to that level of physicality after a 7 year break would be quite a task, though possible. For me, my recovery was going along the lines of general improvement, and I assume would have tapered out at a level of being highly functional but still having to be careful about exercise or what not. I then caught a cold which completely switched off the remaining ME symptoms. Though I was mild for about 4 years before remission, the deconditioning post-ME took a couple of months to work through and my body had to adjust to its new energy capabilities. I'm now able to exercise daily and do everything a normal person without ME can do.
It's possible, but highly individual and for now I would say relies a lot on luck as we have yet to find anything that works across the board.
It's possible, but highly individual and for now I would say relies a lot on luck
I use caryophyllene and I source it from Copaiba essential oil. I use it sublingually so it can reach my brain and nervous system without my liver metabolising it and making it unusable
The fact that a viral infection switched it off implies that the immune response is involved. My (vague) theory of ME is that it involves a feedback loop involving the immune systems, and the right input can switch the state.
..could getting it again ..or a different variant (or different viral infection) turn it back off again?
That would be a flat out No... yet! 15 years of sliding downhill, and no reversals yet to anywhere near my previous state. But I still hope one day that will shift, as I hope it will for everyone here in this PR community.I just wondered as I'm new here and have only found out recently I was orginally misdiagnosed for years .... if anyone has ever had a period where they managed to get back to their original levels of mobility? (ie before your first big episode of ME/CFS).
I missed that!...I wonder...if someone didn't start getting bad CF until after they got covid....could getting it again ..or a different variant (or different viral infection) turn it back off again? Would it need to happen quite soon after or could it still reverse it several years after? ..Interesting thought!
@nolongerdiseased Your thread is helpful. Anti-inflammatory diet + low dose Abilify is on my list for the upcoming year. Not sure what to do to catch cold on purpose. Walking naked in the snow?😁 I want to make it.I assume it would have a lot to do with the subset of ME regarding ability to catch viral infections. In those who are far more susceptible to colds/flus with ME (catch them all the time) and those who catch them at a similar rate as when they were healthy, I doubt a cold would switch off symptoms as it did with me. The subset of people who are no longer able to catch viral infections (as I was) would probably be the most likely to experience a reset, provided an outside treatment is able to get their immune system to be able to catch viruses again. In my case Abilify seemed to do this.
Hopefully the research of people like Ron finds a way to escape whatever feedback loop we may be in without relying so much on luck. A factory reset for all would be nice..
I wouldn't say that I am unable to catch a viral infection; it's just rare. I've had maybe 3 or 4 in 20 years, and those gave minor symptoms for a couple of days.
That is a good point. Saying people are completely unable to catch viral infections is probably a bit of an overstatement, though there definitely still seems to be a pattern for some that it becomes very rare to catch viruses. This again is complicated by the fact that a lot of people can't leave the house or have much exposure to other people, which diminishes the likelyhood of catching anything further.And that's tough to figure out. I believe the 'average' person catches the flu once every 5-7 years (just going by memory). So being sick with the flu 3-4 times in 20 years is actually just normal. Now if it were just a cold and not the flu, that also could be different. And obviously our testing and data sucks on this stuff, so some of it is very vague guessing.