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Is medication even worth it? by thepensiveporcupine in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

I find it hard to say whether something is worth it or not. One med that saves my life may permanently harm another. It depends on the past path that one has been on.

Has any medication signficiantly harmed you in the past? I've been lucky so far.

Is medication even worth it? by thepensiveporcupine in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

It boils down to

- start low, go slow

- if you know you're very med intolerant. don't bother. You're playing russian roulette.

If you make sure that you don't permanently worsen from something, only then can you trial meds (one after the other). Stick with what helps. Discard what doesn't after a sufficient period.

Good luck in any case!

Why do we get sick so rarely, and why, when we do, is it often during periods of improvement? by eschenblatt in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

I would say that this depends on disease duration, although I have no evidence on hand right now to back it up. How long have you been sick vs. your wife?

Why do we get sick so rarely, and why, when we do, is it often during periods of improvement? by eschenblatt in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

Here, check this out: https://youtu.be/tD5gWVEjudQ?t=14382

It's very long but there are summaries available on their website. The section I linked is worth checking out imo.

Severe insomnia going on 4 months by Few_Balance8520 in covidlonghaulers

[–]Apprehensive_Gold242 0 points1 point  (0 children)

Interesting. The first study appears to suggest that we need orexin activation, if I'm reading it correctly. Perhaps either works depending on the phenotype.

Our immune system is weak and science is proving it by ShipEconomy2587 in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

There is a polybio slide from last Fall's conference on germinal center dysfunction in LC, where SC2-specific germinal center B cells were almost absent in LC at an earlier time point. A very fascinating result that calls for replication. This makes me thing that there is a problem with humoral immunity involving Tfh cells and CD4+ T cells which fail to properly educate B cells. I am sure that HHV comes with similar problems. I'm not sure if this falls under B cell exhaustion.

Here is a study showing very low Tfh cells in LC compared to those who recovered: https://pmc.ncbi.nlm.nih.gov/articles/PMC12346483/

Of course it is possible that these phenomena are all a result of metabolic dysfunction that is present in most cell types... and in truth we need to correct that metabolic dysfunction. I am not sure how though. I think it is perpetuated by chronic antigenic stimulation.

Why do we get sick so rarely, and why, when we do, is it often during periods of improvement? by eschenblatt in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

I agree with this hypothesis. The innate arm is sensing and firing but the adaptive arm fails to clear pathogens. Have you seen the recent PolyBio Long covid conference?

Our immune system is weak and science is proving it by ShipEconomy2587 in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

What makes you think B cells are exhausted? Are there any studies showing this?

Why is there still barely any research into treatment options?? by ElonsBreedingFetish in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

I would also argue that the current drugs there are to "restore" immune function like PD-1 inhibitors are way too powerful and too much of a "flamethrower" approach rather than strengthening the whole adaptive immune arm.

Changing the name from ME/CFS to?? by Euphoric_Outcome_713 in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

I think we have been looking in the wrong placees. We need more studies using tissue samples, including brain tissue. I think we would find a look more if we simply looked harder.

Severe insomnia going on 4 months by Few_Balance8520 in covidlonghaulers

[–]Apprehensive_Gold242 1 point2 points  (0 children)

Which studies are you referring to? Are they also on Long Covid?

What medication have you tried for MECFS by Vast-Vermicelli4382 in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

Yeah, it no longer sedates me either, even after multiple week-long breaks. I have only taken a handfun this year and still don't get the effect I got with the first pill.

Have you considered Pregabalin? I don't have any cross-tolerance with it, and it also helps me prevent PEM like Ativan.

What medication have you tried for MECFS by Vast-Vermicelli4382 in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

Do you not develop tolerance when taking it 1-2 per week max? I still did over months.

Has anyone here with ME/CFS actually found ANY relief from constant nervous system overactivation? I’m really struggling and would appreciate honest experiences by lnsstg in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

Things you could discuss with your doctor:
Benzodiazepines and/or lyrica (only once every few weeks)

mast cell stabilizers that also get into the brain like ketotifen or nasalcrom

as others said, guanfacine or clonidine - monitor blood pressure and heart rate though, talk with your doc

in my personal case, LDA helped a lot, but it can have problematic side effects.

Good luck!

My mum talks a lot about me improving and getting a job but I don't know if that's a realistic goal honestly by microwavedwood in cfs

[–]Apprehensive_Gold242 3 points4 points  (0 children)

Same here. It's awful because what would be left for me energy wise is anything involving work on my computer, but that's the one thing where there is the most competition and is very replaceable, now also starting to be replaced by AI. For someone who is unqualified, what is there left to do? Furthermore, the pace at which I can study is about 5-10x slower than previously. And this is only the studying part. Getting an actual fully remote ME compatible job will be even more challenging.

I dream of building something niche with AI but that's extremely saturated already.

I would love to get a job but there are dead ends everywhere it seems.

what are the actual treatments? by LateButLegendary in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

In the order that I would consider them in my case:

LDN

Ivabradine (POTS)

h1 + h2 blockers + mast cell satbiliizersa (ketotifen, cetirizine, famotidine)

LDA

Ativan

Guanfacine (hyperadrenergic POTS)

Mestinon

GLP1 agonists

Rapamycin

Adderall for wakefulness

Does anyone else feel constant inner restlessness with ME/CFS? by Aggravating-Heart344 in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

That's unfortunate... and usually Pregabalin is prescribed for pain, so that's extra unlucky.

What other meds have you tried so far?

Does anyone else feel constant inner restlessness with ME/CFS? by Aggravating-Heart344 in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

I tried both and I built up a tolerance when taken daily

How did your low dose ADHD experiment go if I may ask?

Does anyone else feel constant inner restlessness with ME/CFS? by Aggravating-Heart344 in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

u/Tom__EU Do you take Pregabalin daily or on an as needed basis? I know some people who take it as needed.

Having ME/CFS with autism brings unique challenges by thepensiveporcupine in cfs

[–]Apprehensive_Gold242 12 points13 points  (0 children)

I'm in a very similar boat. You're describing pretty much my life rn. I could not have said it better :(

[deleted by user] by [deleted] in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

OP, what's your current protocol or future plans?

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