Anyone ever managed to get back to where they were???

[Treeman]

I manage my dysfunctional immune system with a CB2 agonist, caryophyllene.

Hi, can you share your treatment with me? Thanks

 

[JES]

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.

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?

 

[CSMLSM]

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.

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.

You can be there again RM, I am sure of it. I hope you do get there!

 

[CSMLSM]

Hi, can you share your treatment with me? Thanks

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.

I take before bed and when I get up. I then take it every 3-4 hours or before and after activity. We know when we know if something will trigger your condition so use it like a preventative and PEM preventer by taking before and after. If resting and not doing anything to trigger ME/CFS symptoms take every 3-4 hours.

I did mix with MCT oil to dilute and it worked good. To save money I now just take it pure as I do not mind the taste, 1 maybe 2 drops. After 1-2 minutes so it can absorb under my tongue through the mucosa I take a drink or food to remove the taste. It is in fact a flavour deemed safe for consumption by FDA and EU food safety agency.

I have today read in an old thread that you asked before and I am sorry I did not answer you then. I was dealing with immune activation from the treatment at the time. The immune activation is part of the treatment we may possible go through as our immune system pulls back and is able to recognise any opportunistic infections and functionally attack those. If and when this is experienced I take the copaiba much less so not to get in the way of functional immune activation for about 7-10 days or when it feels like it is subsiding. It can be like a mild increase of ME/CFS and stress (see image below) can be a big trigger while like this so avoid. When I cut back I use before bed and when I wake, then maybe if I feel too bad to manage it. I used CBD a lot at first and it works synergistically with caryophyllene and was necessary at the beginning and infrequent now. I used the CBD sublingually.
Dragonfly CBD Cannabidiol Oil 1000mg 10ml | CBD | Boots

Bought this 100ml 6months ago and still have a bit under half left

Amazing non-cannabis cannabinoid: Caryophyllene 3 - YouTube This video covers science and a product made with caryophyllene.

It is shifting between these microglia states the CB2 agonist works, it also affects many other immune cells in a positive way for us (ME/CFS) but I want to keep this short for you, ask questions if you like just do it on any of my threads so I do not invade other peoples.

Microglia Polarization From M1 to M2 in Neurodegenerative Diseases - PMC (nih.gov)

Abstract

Microglia-mediated neuroinflammation is a common feature of neurodegenerative diseases such as Alzheimer’s disease (AD), Parkinson’s disease (PD), amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS). Microglia can be categorized into two opposite types: classical (M1) or alternative (M2), though there’s a continuum of different intermediate phenotypes between M1 and M2, and microglia can transit from one phenotype to another. M1 microglia release inflammatory mediators and induce inflammation and neurotoxicity, while M2 microglia release anti-inflammatory mediators and induce anti-inflammatory and neuroprotectivity. Microglia-mediated neuroinflammation is considered as a double-edged sword, performing both harmful and helpful effects in neurodegenerative diseases. Previous studies showed that balancing microglia M1/M2 polarization had a promising therapeutic prospect in neurodegenerative diseases. We suggest that shifting microglia from M1 to M2 may be significant and we focus on the modulation of microglia polarization from M1 to M2, especially by important signal pathways, in neurodegenerative diseases.

The protective effects of β-caryophyllene on LPS-induced primary microglia M1/M2 imbalance: A mechanistic evaluation | Request PDF (researchgate.net)

Abstract

Aims Neuroinflammation is observed as a routine characterization of neurodegenerative disorders such as dementia, multiple sclerosis (MS) and Alzheimer's diseases (AD). Scientific evidence propounds both of the neuromodulatory and immunomodulatory effects of CB2 in the immune system. β-Caryophyllene (BCP) is a dietary selective CB2 agonist, which deserves the anti-inflammatory and antioxidant effects at both low and high doses through activation of the CB2 receptor. Methods In this study, we investigated the protective effects of a broad range concentration of BCP against LPS-induced primary microglia cells inflammation and M1/M2 imbalance and identifying the portion of the involvement of related signaling pathways on BCP effects using pharmacological antagonists of CB2, PPAR-γ, and sphingomyelinase (SMase). Key findings The protective effects of BCP on LPS-induced microglia imbalance is provided by the M2 healing phenotype of microglia, releasing the anti-inflammatory (IL-10, Arg-1, and urea) and anti-oxidant (GSH) parameters and reducing the inflammatory (IL-1β, TNF-α, PGE2, iNOS and NO) and oxidative (ROS) biomarkers. Moreover, we showed that BCP exerts its effects through CB2 receptors which overproduction of ceramides by SMase at middle to higher concentrations of BCP reduce the protective activity of BCP and results in the activation of the PPAR-γ pathway. Significance In conclusion, the low concentration of BCP has higher selective anti-inflammatory effects rather than high levels. On this occasion, BCP by modulating the microglia is able to have potential therapeutic effects in neuro-inflammation conditions and microglia cells such as MS and AD.


Taking too much may not be beneficial and many medications use the same enzymes to metabolise so may interact with many common medications.
If anyone is considering taking caryophyllene, caryophyllene oxide and Humulene containing substances please check medications- CYP3A | Phoenix Rising ME/CFS Forums

 

[CSMLSM]

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?

Hi JES I have replied to treeman so see that post also about the treatment.

Yes feel fully well like you say but the body is weak with atrophy and the condition takes time to unravel. Immune dysfunction needs to be rebalanced and as this happens you will encounter opportunistic infections that come to light along the way. First thing over many tries is back spots from where we sit and lay all the time as an example, bowel disruption and headaches may be experienced.

In the past I used cannabis (THCA, THC, CBDA, CBD, CBN, Caryophyllene and other constituents of the plant) for relief and worked on why it helped me, 2 decades later.....this current recovery I have been at it approx 2 years. CBD at first and last 6 months with Copaiba essential oil because it contains caryophyllene which is a selective CB2 agonist. CBD helps raise endogenous cannabinoids but has its limits to what it can do and how long it can stay effective. Caryophyllene is a more specific compound for what I am doing, activating CB2 receptors itself.

I am still making physical strength progress and learning to build a routine into my life and get used to things working as they should. Cognitive ability, focus, memory ect are still improving. The brain is like a muscle and as it is used it gets stronger and I have struggled for so long cognitively that muscle needs exercise if you know what I mean.

Yes I MUST take everyday throughout to some degree or I do start to decline. I keep testing this being the person I am and the longer I reduce the longer and harder the bounce back to better. Trust me I have tried to stop. EBV which is thought to cause ME/CFS is a latent virus so unless we can remove it from our bodies we are stuck to manage its existence/affect.

I do not mind questions at all. Please ask on any of my threads instead so I do not invade others threads please.

 

[Emeline]

I’ve spoken with friends and family about my CFS and several them have known other people with CFS - two reported a friend who had completely recovered and a family friends brother had been struggling with it for a decade without recovery. Obviously this is third hand so take it with a grain of salt, but I think most of the people who recover leave the community or are still pacing to an extent, and social media isn’t within their allotted energy budget.

 

[L'engle]

From what I have heard over the years, those who had food allergies as major triggers have often been able to recover a large amount of functioning. It's very hit and miss. There are more things to try, many of which seem to work for one or a few people and not much for others. Throw everything at the wall and see what sticks essentially. Finding things that improve symptoms is very possible for a lot of us.

 

[nolongerdiseased]

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.

 

[Inca]

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.

That's great! I've never managed to regain full mobility but I am alot older now and have several other issues besides the C.F.

I do as much as I can around the house and just pottering about and only having to walk my dog once a day (using a mobility scooter) is just about manageable most days but throw in a day with an outing or socialising (lip-reading/speaking for a couple of hours) and I'm back to needing several days to recover!

 

[Wishful]

It's possible, but highly individual and for now I would say relies a lot on luck

It's really good to hear that it is possible for ME to switch off and stay off. Even if it is a very low probability, it's still possible, which means that there's a good chance of figuring out a way to do it intentionally and reliably.

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.

 

[Rufous McKinney]

Hi, that's a shame.

I was mild for many decades so during that time I could do things like hike all day; go leaping on giant boulders, I was never very aerobic but I could push thru and I got to the top of Gaviota peak along with everybody else.

 

[Rufous McKinney]

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

We miss you, @CSMLSM

I just read the Copaiba Oil contains two terpenes which may stress the liver.

that made me nervous. My liver is already stressed, I'm sure.

so would this method "bypass" the liver with regard to other terpenes?

And doesn't everything end up going thru the liver eventually?

 

[Inca]

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.

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!

 

[Wishful]

..could getting it again ..or a different variant (or different viral infection) turn it back off again?

As with everything ME, the only way to find out is to do the experiment on yourself. My guess is the answer is: it's not impossible, but very unlikely, or else we'd have more reports of PWME getting better after infections.

Didn't the Fonz fix cars by smacking them in just the right spot? We need that skill for ME.

 

[Nord Wolf]

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).

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.

 

[nolongerdiseased]

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!

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..

 

[Andryr]

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..

@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.

 

[Wishful]

Not sure what to do to catch cold on purpose.

Visit a school and have kids sneeze in your face?

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.

 

[hapl808]

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.

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.

 

[nolongerdiseased]

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.

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.

I feel there was definitely something wrong with my immune system in that I was constantly exposed to germs and viruses and still didn't catch anything for at least 6 years. That time frame is still obviously a lot smaller than a lot of other peoples, but prior to that I would come down with a cold at least once a year. While I was ill I was still exposed to germs and viruses. I went to school pretty much every day from age 14 onwards and my mother worked at a primary school and would come down with colds herself somewhat frequently. I spent 2 weeks in Japan with my brother where he caught something that knocked him around awfully, and despite going out everyday with him and staying in a studio apartment the size of a shoebox I was completely untouched.

Due to the spontaneity of that last stretch of recovery being caused by a cold, I really doubt many could recreate it or find the same benefits. I've only ever found anecdotes of people saying that catching a cold temporarily provides relief for a couple of weeks at most. Its an interesting n=1 experience, and one that I am very lucky to have had.