@M_C, do you still take B12? Would you say it has lost its effectivness over the years?
Yes, I still take it to maintain the benefits (which plateaued). I find that if I go without B12, 6S-5-MTHF, and water fasting for a period, brain fog come creeping back. It could be that just one of these is responsible for the improvements, I don’t know.
By the way - I think these benefits might be unique to my situation. It could be that the methylation mutation I have (A1298C) makes these supplements help me when they might not help others.
I’m starting to think that a good approach to PFS is to focus on whatever underlying vulnerabilities or injuries/diseases that you had in the past, and try to address those. That might put the body in a position to overcome PFS by itself.
So while I encourage people to find out what their weaknesses are, I’d also donate whatever you can to the foundation and to whatever the PFSnetwork is cooking up.
2 Likes
Thank you for your answer.
I was diagnosed with several deficiencies (B12, B6, D, iodine, CoQ10, just to name a few), and I don’t know wether to supplement, because I’m scared of sides.
That I’m deficient in B12 is definitely odd, I eat plenty of meat.
I guess this points to a problem in my gut. Something must be preventing me from absorbing it.
EDIT: how often do you fast? Are you still following the 2-3 days method?
I’ve found that 24 hours once a week works pretty well to keep me level-headed.
2-4 day fasts brings me to the “next level” in improvements, but I’m not sure if they last or are cumulative. It’s a really challenging experiment to run…
BTW, I take vit D and the occasional iodine tablet as well.
Interesting. I’ll give it a shot.
Do you fell you benefit from Vit D? How much do you take?
Does fasting help you with sexual sides?
Sorry for the number of questions, but I see some commonalities with my story.
Vitamin D3 - 5000iu. I don’t feel any specific benefits. But after PFS started I tested low for it a few times - supplementing brings it back to normal range.
If you’re worried about side effects, try spending time in the sun instead. That definitely makes me more relaxed.
Yes, but it was mostly noticeable with longer fasts. The ten day fast I did helped with libido, which was encouraging. Not a fun thing to do, though.
I should note that benefits happen AFTER the fast, not during (at that point you’ll feel like shit).
Yes I tested somehow low as well, around 22 with minimum range being 30.
I’m worried about sides in general, not just Vit D, but I’ll try something.
Did it help with erections?
10 days sounds like a lot to endure.
Erections isn’t my main problem, so I don’t know. However, I’ve noticed that endurance exercise helps over time.
1 Like
When I first joined this forum, I picked the dumbest username I could think of at the time (MerryChristmas) to give myself extra motivation to improve my health through sheer embarrassment. 11 years later, I can safely say that dumb usernames do not help with PFS - time to move on. Since I’ve started modding, it also make sense to have a less puzzling way to refer to myself.
6 Likes
Now like ike a 90s rap DJ, groovy!
4 Likes
I had read some positive stories about BPC-157, so I tried it last year. Unfortunately, It didn’t seem to do anything for me. If anything, I felt a little bit worse.
- Name of the therapy/substance: BPC-157
- Dosage: 500mg
- How often you took it: 1x/day
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ X]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [14 ]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [X ]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X ]
- Slightly worsened [ ]
- Greatly worsened [ ]
2 Likes
I’ve been using Acetyl-L-carnitine in the hope of improving anhedonia – it’s actually had some mild positive effects on motivation and libido, although the effects were stronger in the beginning.
One worry I have about it is that feel more lethargic when I stop taking it. I don’t know if it’s because my baseline has gotten worse after ALC (some kind of withdrawal?), or if the ‘delta’ from my ‘ALC-state’ is so big that I feel how bad my baseline really is.
I’ve also tried microdosing psilocybin in the hopes that I would be able to snap out of the anhedonia. It certainly gives me more energy and a feeling of alertness when I take it, and it can be a nice thing to take instead of alcohol if I go out with friends. But after two months of regular use, I didn’t see any big changes to anhedonia. No side effects to speak of, though.
- Name of the therapy/substance: ALCAR (Acetyl-L-carnitine, ALC)
- Dosage: 1000mg
- How often you took it: 1x/day
- Status
- Still using [X]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
- Duration of use: 4 months
- Response when you started:
- Greatly improved [ ]
- Slightly improved [X ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [X]
- Stayed the same [ ]
- Slightly worsened []
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Name of the therapy/substance: Psilocybin microdosing
- Dosage: 100-200mg
- How often you took it: 3x/week (one day on, two days off)
- Status
- Still using [X] (not regularly anymore)
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
- Duration of use: 2 months
- Response when you started:
- Greatly improved [ ]
- Slightly improved [X]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [X]
- Stayed the same [ ]
- Slightly worsened []
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
1 Like
People have been asking about opiates, so I’m posting about my experience with them. I took a pretty strong painkiller when I was undergoing cancer treatment in 2015.
It didn’t have any impact on PFS symptoms.
- Name of the therapy/substance: oxycodone
- Dosage: don’t remember
- How often you took it: 2x/day
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ X]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [14 ]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X ]
- Slightly worsened [ ]
- Greatly worsened [ ]
2 Likes
“Pessimism of the intellect, optimism of the will.” -Antonio Gramsci
4 Likes
I thought I’d give a brief update – I wanted to rule out SIBO as a cause of digestion problems, so I did a test to find out. I turned out I had a sub-type of SIBO called intestinal methanogenic overgrowth (IMO). I got some help to clear it – it was a pretty tedious process that required taking lots of supplements (and I had to google a lot of ingredients to make sure they weren’t significant 5AR inhibitors) and a fairly restrictive diet. 6 months later, I re-tested, and found that the IMO was gone (at least on the test). I’m in the process of adding more types of fiber back into the diet to increase microbiome diversity. So… success?
Not so fast… my digestion definitely feels different, but the core complaints (constipation, lack of hunger/satiety) are still there. It’s possible that it’s made brain fog less intense, but that symptom had already improved quite a lot for me. One interesting observation was that there was a slight, but noticeable improvement in sexual symptoms in the few days after stopping antimicrobials. This feeling was similar to how I’ve sometimes felt after coming off a long fast. (A few days later, I was back to baseline.)
Pretty disappointing after doing that much work. However, I’ve tried so many things over the years, I’m already used to dealing with the disappointments of failure. I’ve learned not to expect anything.
I’ll keep trying the occasional experiment if it seems low risk, and I’m donating as much as I can to the PFSN. I hope you’ll join me.
8 Likes
which antimicrobials did you use for the methane SIBO?
im dealing with a similar situation
also, did you take a stool test along with the breath tests?
from my research, a lot of SIBO sufferers develop other conditions such as leaky gut and other dysbiosis.
what ends up happening is people treat SIBO to eradicate, then they relapse or don’t have a successful restoration of function, because they still haven’t treated other conditions.
its like a loop that gets people stuck. i just took a GI Map so im waiting on that myself but im expecting numerous gut problems along with SIBO
@lakehouse - I’m sorry I didn’t notice this.
It was hard to work on SIBO/IMO of without taking any 5ARi herbs - i relied mostly on:
- allimax
- silvercillin
- megaIGG 2000 (colostrum)
- strict Paleo diet
- digestive enzymes
I worked with a gut specialist and felt i got a pretty custom protocol, based on both breath tests and stool tests. I don’t think there’s one size fits all approach to this stuff.
I felt like the work i did with this specialist helped with brain fog and cognitive symptoms in particular. Even then, my digestion is still not in a good place, and sexual/physical symptoms did not change. So I’m not sure if going down this path will feel worth it to everyone.
Hey @M_C, I just finished reading your whole life story, and holy shit, man, I have to say: I’m really impressed and I admire your journey. I can relate to a lot of your symptoms: lack of emotions and libido, brain fog, and digestion issues. How are you feeling these days?
Hey @dome1234, thank you for reading, but I’m also sorry that you have to waste your time on decades old disease narratives.
Sorry to hear that. It sucks. None of us deserved this.
I’m functioning. I’m mostly free of brain fog and anxiety, which helps a lot when trying to work and maintain a “normal” life. Emotions are still mostly absent – I can feel ‘comfort’/relaxation (basically the absence of anxiety), and I can appreciate a good meal and the company of nice people, but nothing intense like anger, sadness, or intense pleasure. Sex is decent, but it’s hard to climax with penile sensitivity being so limited.
I’m able to work out 7 days/week now, and keeping a balance between cardio and strength + focusing on protein intake has given me more energy this year. I’m busier than I’ve been in a very long time. I keep hoping that I’ll feel like myself one day, and in the meantime I’m trying to make the best of it.
3 Likes