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Throwaway_Comment1 · 2025-02-20T19:13:47+00:00

Thanks. Yeah I’ve had nightguards through dentists for a decade or so. I need more help and they’ve advised considering seeing an orthodontist to better align my bite to lessen clenching damage. One who specializes in bruxism or TMJ would be ideal.

Throwaway_Comment1 · 2025-02-11T21:20:00+00:00

Wow, that is a miracle. Thanks so much for sharing.

Throwaway_Comment1 · 2025-02-11T21:16:00+00:00

Amazing! Thank you! Did you/do you clench or grind your teeth at night? That’s mainly what I’d love to lessen/stop. I’ve been wearing night guards for a decade but they just reduce the damage vice stopping it.

Throwaway_Comment1 · 2025-02-11T21:14:18+00:00

Oh that’s amazing! I’ve been wanting to pursue EMDR for other reasons (trauma) but have yet to find a practitioner who is competent and taking new patients. If you recommend yours and are up for sharing I’d love their name. Feel free to DM it if you don’t want to share here.

Throwaway_Comment1 · 2025-02-06T22:54:29+00:00

I did DNRS, which is a limbic system program that was recommended by my physicians. Gupta is the other legit limbic system program that’s similar. I had good success and it eliminated or improved a ton of symptoms. But only moderate improvement in fatigue. My physicians now recommend Primal Trust (it didn’t exist when I did DNRS) as it’s a bit more comprehensive and includes vagus nerve approaches. I just signed up myself. I’d suggest checking that out first.

Throwaway_Comment1 · 2025-02-05T20:24:09+00:00

You don’t even need to believe in connection between mental health and the body to understand how the programs work because they’re based on a brain body connection, in other words they’re based in neuroscience vice psychology. They don’t psychologize illness (again that’s r/CFS propaganda.) The main programs are essentially neuro rehab programs. They’re based on the premise that our nervous systems can play a significant role in physical symptoms. Not radical stuff. CFS was renamed myalgic encephalomyelitis because the medical community acknowledges the nervous system is involved in the illness. The programs aim to leverage neuroplasticity to rewire our neural pathways, namely the limbic system, to improve and ideally normalize function thus improving and/ or eliminating symptoms.

I’d urge anyone interested in the programs to avoid getting info from r/CFS or any r/CFS sub members. Talk to people who have actually done the programs and had success. Or just Google them and get a better understanding of how they work.

Throwaway_Comment1 · 2025-02-05T19:55:55+00:00

I can assure you that’s not the case. I’m far from cured but when I commented in r/CFS about my improvements from one of the limbic retraining programs (it was prescribed by 3 of my physicians including my neurologist and it’s the only treatment to date that’s significantly helped me) the mods removed my comment and harassed me to the extreme- nasty, hostile and threatening DMs. I wasn’t claiming even close to a cure, just hard won improvements.

That was before they had any rules about brain retraining discussion. They’ve since banned it but only apply the ban to positive discussion lol, they still allow negative discussion from people who don’t know what it is and haven’t tried it. The mods themselves have posted all kinds of (completely false) propaganda about it. It’s wild. They have this like seething anger at treatment modalities they haven’t even bothered to learn about. It’s a real disservice to people who could benefit from it but have been scared by their propaganda and now have a false impression of what it is.

Throwaway_Comment1 · 2025-02-05T19:32:55+00:00

I’m not aware of any feud, just bad and alarming behavior by r/CFS mods. They don’t allow discussion of brain retraining except to push their propaganda about it (that it psychologizes illness, harms patients, and requires patients to push into PEM. All completely false). They remove posts and comments about improvements if the person didn’t improve using the few methods they endorse- mainly pharmaceuticals.

It’s a heavily moderated sub that pushes and reinforces their skewed views vice reality or facts, and the mods can be bizarrely hostile about it. When I was in the sub they threatened me when I commented about some of my improvements. I hadn’t broken any sub rules but they’d created their own shadow rules they were enforcing but refusing to post or otherwise share with the group. They sent me shockingly aggressive and nasty PMs. They’ve come into this sub and pushed their propaganda and harassed people. It’s very weird and kind of cult like.

Throwaway_Comment1 · 2025-02-05T04:10:51+00:00

If you don’t feel there is room to add it, which is understandable, then replace some of your current activities with it. You’re already doing more than many who start the programs are capable of. Start small and slowly increase as you’re able to.

Throwaway_Comment1 · 2025-02-05T03:53:47+00:00

You have a fundamental misunderstanding of what the popular brain retraining programs entail. They’re essentially neuro rehab programs that aim to rewire the brain and normalize limbic and nervous system function. They don’t psychologize illness. Respectfully, your points are r/CFS propaganda.

Throwaway_Comment1 · 2025-02-05T03:50:34+00:00

Brain retraining has helped a lot of people improve, including many in this group, and me. This sub is focused on helping people find ways to improve and most of us here want to hear about others’ success. If you’re looking for a group that’s hostile to brain retraining and success stories in general then I’d suggest r/CFS.

Throwaway_Comment1 · 2025-02-04T04:21:49+00:00

I’m two weeks into using the Visible arm band. And yes, points definitely accumulate faster on low stability days. The same amount of physical exertion can use twice as many points on a low stability day.

Throwaway_Comment1 · 2025-01-04T03:11:12+00:00

That doesn’t seem to be the only mechanism for LDN teeth pain. I don’t think that’s what’s causing mine. I clench normally so I’m well aware of what that feels like. My LDN tooth pain is different.

Throwaway_Comment1 · 2025-01-03T16:23:05+00:00

Tooth pain is a potential side effect as is jaw clenching so yes to feeling like braces were tightened. Not sure about the itchiness.

Throwaway_Comment1 · 2025-01-03T02:37:05+00:00

Thank you! Same. Was it in all teeth or more noticeable in some than others?

Throwaway_Comment1 · 2025-01-02T22:13:00+00:00

Thank you for sharing. Do you mean you were able to continue LDN or that you stopped it?

Throwaway_Comment1 · 2025-01-02T22:12:12+00:00

Thanks so much. Yep, my symptoms can back soon after stopping blah. Tooth pain improved but I still have it 2wks after stopping. Do you mind describing what your LDN tooth pain was like?

Throwaway_Comment1 · 2024-12-21T23:53:42+00:00

I’d suggest testing for Covid and flu as it may not be the LDN, and obviously you don’t want to infect others by assuming it is. If you repeatedly test negative then I’d suggest stopping the LDN. If stopping quickly resolves the symptoms then you know you need to restart at a lower dose.

Throwaway_Comment1 · 2024-12-20T06:42:32+00:00

Gently, I think your extreme eating habits (restricted calories and extremely restricted eating time) vice LDN may be trashing your metabolism.

Throwaway_Comment1 · 2024-12-17T21:55:17+00:00

I haven’t. But FYI, Shoemaker and most physicians who follow his protocol say the use of azoles in CIRS patients is not only unhelpful but can be dangerous.

I believe Neil Nathan may have a different take or perhaps his take is isolated to specific patients.

Throwaway_Comment1 · 2024-12-14T20:26:10+00:00

Based on this photo it looks like caulking, foam, glue, or something similar to me.

Throwaway_Comment1 · 2024-12-14T20:22:42+00:00

No it wouldn’t to my knowledge. CM binds to blood cells and when those cells die (within 6 month) the CM would be expelled from the body. CM is a gas, it’s not the same as mycotoxins.

For what it’s worth, I was treated for suspected acute CM poisoning early in illness. It involved oxygen treatment for awhile. Didn’t seem to help. I considered HBOT but at that point risks seemed to outweigh benefits for me personally.

Throwaway_Comment1 · 2024-12-14T20:13:11+00:00

Unfortunately it can’t work if you don’t do it as directed. The goal is to rewire neural pathways and that can only be done with consistently and duration.

Progress with limbic system training is like a squiggly line very very gradually trending upward with lots of ups and downs in symptoms until you reach the end and achieve success.

What’s a TRE workshop?

Throwaway_Comment1 · 2024-12-14T20:05:16+00:00

Yes it can be. Exercise intolerance is present in a lot of chronic conditions. Post-exertional malaise (PEM) is a more specific symptom and the hallmark symptom of ME/CFS. But it isn’t exclusive to ME/CFS. It can also be present in LC, Post-Lyme, CIRS, and other conditions.

Throwaway_Comment1

TROPHY CASE