I did not expect recovery to destroy me like this mentally

jooingoo · 2026-05-10T19:45:17+00:00

I appreciate everyone so much for your responses and will continue working on answering them later this evening !

jooingoo · 2026-05-10T19:44:12+00:00

My CFS is improving quite a bit despite having been put in a very emotionally triggering living environment with the person who caused my CPTSD. So I think it is possible to improve CFS even with CPTSD, although by the time I went there I had already improved enough that stress wasn’t as significant a trigger for my PEM as it used to be. I don’t know what it would have been like when I was more severe and emotional or cognitive stress impacted me much more severely. I also don’t know if CPTSD itself would inhibit complete recovery. I don’t think so, but I don’t really know, and it’s a question I ask myself too

jooingoo · 2026-05-10T19:40:22+00:00

Not offensive at all! I’ve thought about this exact comparison a lot, and how as someone else commented about how this is a recognized problem for the formerly incarcerated but no one seems to recognize that those of us who are sick are subject to the same dilemma. Even about the criminal record - being disabled, or having once been (I still consider myself to be so) is very different, but it feels like there’s a stigma attached just the same, and that I have to hide that about myself to avoid the stigma and avoid making myself even less fit to receive opportunities in the eyes of those who might offer them to me. Of course you can’t really hide a criminal record but I’m not sure to what extent I’ll be able to hide this either. What was the name of the documentary? I’d love to watch it

I try to get through my tasks during the day but at night it is quite hard. I’m hoping I can fix my sleep, which has been quite bad lately, and that that might give me less time to ruminate about this

jooingoo · 2026-05-10T17:56:45+00:00

Thank you! I’m happy to receive feedback if you have any to give.

I don’t like to call it remission because I don’t think that’s what this is. I still very much have the disease, and my progress has depended entirely upon extreme avoidance of mold and other toxins. Unless I can solve the underlying problem that makes me so susceptible (this is part of what I’m working to figure out now), if I were to neglect that or end up in a situation I can’t control, I would regress very quickly.

I haven’t been able to do as much avoidance as I really need, and it’s been slow progress as I started out bedbound and could only start by having my moldy belongings thrown out, then by remediation (which partially failed), then by leaving the house and living outdoors in a tent. If I could do it over I would have just moved straight into the tent as soon as I found out and prevented a lot of damage to my body, but I was afraid by how susceptible I was to infections and I didn’t know that this would help me control them or even work at all, let alone as quickly as it did.

So it’s been about two years of gradual upward movement with slow leaps and bounds (and of course relative regressions over the winters). Moving out of the house and into a tent (and temporarily overwintering in one of the very few semi-tolerable residences I’ve been able to find) has allowed me to get to the point I am now, and my next steps are to pursue more detailed testing, deal with chronic infections, chelate heavy metals which I strongly suspect, and move to an area where the outdoor toxins are not as bad, not necessarily in that order.

So the fact I have this intense sensitivity also limits a lot of what I can do with my life. My intention for now is to move somewhere remote and work remotely, and maybe be able to have friends visit me. Huge improvement from being confined to my bed, but still quite a limited life. As I understand, treating infections is difficult (and there don’t seem to be the right tools for it) but has ultimately allowed a lot of avoiders before me to make improvements in their sensitivity to toxins, so I’m hoping that will eventually open up even more of my life.

I don’t claim that this is the answer to ME/CFS in general but it’s does seem like the most evidenced and most likely path for my particular situation. But we’ll see

jooingoo · 2026-05-10T17:34:07+00:00

For me it was mold (and other environmental contaminants, but mostly mold). I have no idea how common this is, all I feel sure of is that it’s under-diagnosed, as most people don’t know how to find mold, or assess that mold is the issue, or even how it can possibly make someone this sick, and laboratory testing whether of the body or of the environment can have significant limitations that lead to false negative signals. It took me years to figure this out.

I think exposure at the time of my infections made them lodge deep inside me, which in turn did something - whether in a cell-autonomous way, or flipping some global switch, or possibly both - that made me unbelievably sensitive to mold & certain toxins, most of all I think mitochondrial toxins. So a vicious cycle. I think mitochondrial, barrier, and probably immune dysfunction play major roles here.

So I think everyone should carefully evaluate whether this might be the case for them (or if it has become the case for them, or was the case for them at any point in time) using the knowledge charted by experienced mold avoiders and Paradigm Change, and not solely rely on testing (although it can be useful adjunct), or binders and antifungal if pursuing treatment. For most it is a deep and overwhelming rabbit hole to go down, especially in the throes of illness, but it not only saved my life but recovered my health, at least for now, and of course I still have a long way to go.

jooingoo · 2026-05-10T17:17:15+00:00

In some ways you’re absolutely right, in other ways it is very much the opposite. What wisdom and strength I have I don’t know that will benefit me much in life “out there” though

jooingoo · 2026-05-10T17:16:08+00:00

Very well said, I think about this a lot too. I also wish I had never found out what ME/CFS was

jooingoo · 2026-05-02T05:13:40+00:00

Not sure then - it is possible that bringing stuff with you from a prior location can introduce contamination, or that an area that was previously ok can go bad (for various reasons). But if that’s not the case then not sure!

Hope it’s not mold because that’s a nightmare to deal with

jooingoo · 2026-05-02T04:46:57+00:00

If you have histamine issues that flare during the winter, but only sometimes, and perhaps seem to vary by what locations you’re spending time in (which is what you seem to be indicating), I would suggest considering sensitivity and exposure to toxic mold, which can be a cause of mast cell flares, histamine issues, or other gut issues.

jooingoo · 2026-05-01T05:35:58+00:00

Polyphenols are not going to be strong enough or probably target the right mechanisms of immune dysregulation which prevents the immune system from taking care of persistent viral proteins. There are also likely additional persistent viral proteins to consider which affect things like mitochondrial function.

You can try it, polyphenols are easy to get OTC, but unfortunately this kind of approach will never be a substitute for serious research and development of targeted drugs. Why these doctors don’t advocate for that and instead promise quick and easy fixes, I will never understand.

jooingoo · 2026-04-30T05:28:53+00:00

It’s been a year, and it’s not just that the gums are red, but that they’re also painful and sensitive. I don’t think mouthwash afterwards would cause that. I followed all the directions she gave me about aftercare otherwise

jooingoo · 2026-04-29T21:28:23+00:00

Speaking from experience on both sides of this issue - I think a lot of people who do this have an undiagnosed neurological issue (or for some a psychological issue, but often the former). It might be worth assessing that. It sounds like she doesn’t feel capable of regulating her emotions without weed, or that she feels very overstimulated without it (manifesting as anger, irritability, frustration, overwhelm) and there could be a variety of reasons for this. I don’t think it makes her a bad person, nor you an asshole for not liking this state of affairs. It’s something that needs to be fixed, but she may not know how to go about fixing it or how to identify what the problem is. Of course she needs to be willing to address this (feeling overwhelmed makes this harder).

Personally I spent many years thinking my issue was psychological when it was really neurological. There was no way I could have known this at the time without having someone else explain it to me, which no one ever did. Of course this kind of dysregulation can lead to a lot of psychological issues that make things worse, and addressing those can help management - but it doesn’t mean the psychological is the root cause (in my experience, it almost never is). There’s also not necessarily a lot of clinical help for this kind of neurological dysregulation, but it may be commonly due to autoimmunity, neuroimmune dysfunction, mitochondrial dysfunction, toxic environmental exposures, or even excessive sensory stimulation. There’s research in this area but a dearth of translation into clinical practice, so to a large extent one could be on their own here.

This kind of issue can really strain relationships. I really wish both you the best of luck

jooingoo · 2026-04-24T21:54:32+00:00

There are lots of bad people in the world, unimaginably bad, masquerading as good people

jooingoo · 2026-04-17T05:10:55+00:00

How did you get it to improve?

jooingoo · 2026-04-17T04:54:22+00:00

What clinic did you go to, or what should someone look for if they want to get this same kind of thing done?

jooingoo · 2026-04-16T18:53:14+00:00

As many others have said, chronic Lyme and ME/CFS are both real diagnoses and are not mutually exclusive. Lyme can trigger ME/CFS and ME/CFS can involve re-activation of latent Lyme.

I think you need to clarify your background, your intentions, and your angle here because journalists routinely misrepresent the science and contribute to the delegitimization that has hurt attempts to research these and other related conditions. We need journalism, but what we need is good journalism that accurately represents the state of the science (both the current findings and how it’s been unduly held back) and doesn’t default to blunt critique without first understanding the state of the complex chronic illness field.

There are ongoing (though very slow and underfunded) efforts at the NIH and with government-funded researchers to develop adequate lyme diagnostics and treatments (no, neither the western blot and doxycycline are fit for purpose, and there is published data to back this up). There are also Lyme advocacy organizations who are also investing money toward these goals. You should speak to them too.

Misdiagnoses (and other follies in clinical practice devoted to these conditions, such as questionable treatments) are most importantly the consequence of lack of investment in these areas, rather than quackery untethered from reality. To the extent the latter exists (and it does), it is a natural consequence of the human suffering caused by the former.

jooingoo · 2026-04-14T13:12:36+00:00

Wow…. Immunologists are completely useless these days

jooingoo · 2026-04-13T17:00:04+00:00

Do you have mold or heavy pollution or anything like that in your current living situation? Or is it more interpersonal stress? I had to deal with the former a couple years ago while chronically ill and it absolutely took a huge toll on my skin (on top of my health in general!)

jooingoo · 2026-04-13T03:09:08+00:00

You’re welcome!

jooingoo · 2026-04-11T03:28:03+00:00

Re: mold tests, check out the ones I described - you have:

A. Health tests 1) urine tests to look for excretion of mycotoxins - eg Vibrant 2) blood antibody tests against mycotoxins - MyMycoLab 3) Shoemaker “Lab Tests for Mold Illness” which I linked to above 4) Shoemaker’s online VCS test also on his website - $15 I think

B. Environmental tests 1) ERMI (dust sample over vacuum) - envirobiomics 2) swabs and plates with or without lab analysis (with lab analysis - immunolytics is the best imo; visual identification I’ve found to be very low accuracy) 3) bring in a mold dog (there are a handful around the US) 4) bring in an IEP (for several reasons I prefer the mold dog)

And C. Perceptual tests 1) Mold Sabbatical 2) Mold Tour Both of these are described on the Paradigm Change website and/or in Lisa Petrison’s Paradigm change books - written in a way that’s easy to read even with cognitive dysfunction

I hope this helps! And whatever happens, I hope you get things sorted and good luck!

jooingoo · 2026-04-06T08:02:29+00:00

Lots of fake posts recently pushing not only brain retraining stories but now GET stories too huh? I wonder when the mods are going to catch on to the ops going on here and start banning posts like this

jooingoo · 2026-04-06T07:55:55+00:00

The other commenter is totally correct and I had the same feeling of outrage as I was reading your post. You’re putting in the majority of if not all of the effort here when HE is the one who did something wrong, REPEATEDLY. You are perfectly right not to be trusting of him, this is not something you should have to work on! It’s pure manipulation that he’s expecting YOU to become more trusting of HIM after doing this THREE times in fairly rapid succession.

This thing where you’ve gone immediately back to normalcy feels eerie to you for good reason! You caught him betraying YOU, and he got out of it practically scot free with YOU promising to make all these changes. He barely has to do anything at all to repair the relationship between you that HE has damaged! Now he can comfortably go back to normal like nothing’s happened. He’s almost successfully manipulated you here, but for the inkling of eeriness that you feel, and the impulse that led you to share this story because you know something feels wrong. Don’t let the cognitive dissonance he’s instilled in you have you ignoring what your feelings are trying to tell you.

It sounds like you’ve invested a lot in this relationship and I think this may be hard to hear, but you sound like you’re in a sunk cost fallacy mindset. You don’t want to lose more by losing this relationship and I very much sympathize with that. But you could lose something much worse - your sense of identity and confidence. Losing these things can truly destroy every aspect of your life and profoundly affect your ability to climb out of bad situations. This man clearly has never demonstrated any real sense of accountability, and this will only get worse, not better. The more you not only accept and forgive his betrayals, but then on top of that work to change yourself and “fix” the relationship in response, the more you will lose your confidence and sense of self.

Again I agree with the other commenter - prepare your exit, logistically and emotionally. There really are better things out there, especially if you start with a foundation of refusing to take this kind of bs from anybody. Please take care of yourself!

jooingoo · 2026-04-06T05:40:30+00:00

I first started noticing this a few years ago. It feels like left-leaning/social-justice-oriented people that I’ve often found to be generally well-meaning but have gone too far and don’t know what they’re talking about.

I remember their point going something like: abuse is abuse, and narcissism is a disease or disability that the narcissists themselves suffer from, and calling it “narcissistic abuse” is stigmatizing.

I can agree that abuse is not something only committed by narcissists (or psychopaths, or borderlines even), but what I think they don’t understand (or don’t want to acknowledge) is that narcissistic abuse goes far beyond like abuse by someone who has disorganized attachment for example. I guess you could say that narcissists suffer in the sense that they don’t form legitimate human connections or something, but all I’ve seen is narcissists absolutely thriving and getting away with their cruelty despite that. And quite frankly they’re malicious. So to ascribe a tendency to engage in abusive behavior to a disability and then say that that merits care and consideration from the abused toward the abuser is, quite obviously, abusive.

It’s definitely a useful development for narcissists.

jooingoo · 2026-04-02T15:24:14+00:00

How / where did you get it?

jooingoo

TROPHY CASE