M_C's story - 11 years of PFS

Member Stories
#90

Hi @TFD – not big changes, but here’s an update, in case it helps anyone.

Re: gut issues – My gut hasn’t really been a focus for me. Clearly something is wrong (I rarely feel hunger or satiety – multiple tests show problems with absorption and food breakdown), but it doesn’t really bother me day to day. I went to a really well-known gut naturopath, took more expensive tests, and he didn’t really find any angles to pursue. This is the fifth or sixth time I’ve been investigating the gut, and it’s gotten me nowhere. I’ve tried adding a bunch of microbes, and I’ve tried nuking them all – I haven’t really felt any different either way. I think that’s why I haven’t pursued more drastic measures like FMT. If the gut really was the key to this, I think I would’ve felt at least something.

When the pandemic started, I quit my job to give myself some time to test the hypothesis that job stress might be contributing to PFS. I spent about 10 months taking it really easy – I put zero demands on myself, apart from a daily exercise/meditation routine, healthy eating, and spending time in the sun. Slept as long as I wanted every day. I definitely felt better, put on enough muscle to go up a size in clothes, but I still felt trapped in the “local maxima” of PFS.

In November I got a really bad testicular pain which was diagnosed as a side effect from anal fissures - small wounds in the rectum. I did a 30 day course of a steroid suppository, and the pain went away. I noticed that I had the occasional rush of “positive feelings” in the pelvic area – I don’t know quite how to describe it. Perhaps the steroids were dampening a rampant inflammatory response? The urologist found nothing wrong with my prostate (normal size etc), but the muscles around the prostate were apparently really tight. Testosterone has anti-inflammatory effects, so perhaps various tissues in the pelvic region isn’t using it correctly, and is therefore causing all these random problems?

I caught Covid in January, and I’ve felt more cold, had more fatigue and neuropathy since then. I think I’m over it for the most part, but my hands are now even more dry and cold than they’ve ever been. They also look completely shriveled and wrinkled, as if I’ve taken an hour-long bath. Just another thing to add to the list…

One really positive change I made in the last few months was to start going to bed at 10pm and get up at 7am. I’ve always been a night person, but when I adopted this new schedule I’ve found that it’s easier to get up in the morning and that I need less sleep. So that’s been good.

Staying in the fight - might try hCG at a lower dose soon. Continuing with DCT stretching to get blood flow into the pelvic area.

2 Likes
#91

I feel like I haven’t had blood flow in the pelvic region for THE longest time

I’m not even sure I remember what it’s like anymore

When you said it’s probably not using testosterone right that’s definitely a bummer. I hope it’s not the case

1 Like
#92

I really couldn’t say.

If we consider that FMT can halt the progression of multiple scleroris while that doesn’t seem to be the case with probiotics … probably there’s a difference.

But that’s just a guess.

FMT is something I’m definitely looking into if I don’t get better.

I have other options before (nothing revolutionary) that I want to try, but right after those FMT is definitely on the list.

1 Like
#93

@M_C, do you still take B12? Would you say it has lost its effectivness over the years?

#94

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
Why is B12 worsening my symptoms?
#95

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?

#96

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.

#97

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.

#98

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).

#99

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.

#100

Did it help with erections?

10 days sounds like a lot to endure.

#101

Erections isn’t my main problem, so I don’t know. However, I’ve noticed that endurance exercise helps over time.

1 Like
#102

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
#103

Now like ike a 90s rap DJ, groovy!

4 Likes
#104

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.

  1. Name of the therapy/substance: BPC-157
  • Dosage: 500mg
  • How often you took it: 1x/day
  1. Status
  • Still using [ ]
  • Stopped with no lasting change to initial symptoms [ X]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: Days [14 ]
  2. Response when you started:
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [ X]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. 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 [ ]
  1. 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
Anyone try BPC 157 or other healing peptides?
#105

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.

  1. Name of the therapy/substance: ALCAR (Acetyl-L-carnitine, ALC)
  • Dosage: 1000mg
  • How often you took it: 1x/day
  1. Status
  • Still using [X]
  • Stopped with no lasting change to initial symptoms [ ]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: 4 months
  2. Response when you started:
  • Greatly improved [ ]
  • Slightly improved [X ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. 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 [ ]
  1. 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. Name of the therapy/substance: Psilocybin microdosing
  • Dosage: 100-200mg
  • How often you took it: 3x/week (one day on, two days off)
  1. Status
  • Still using [X] (not regularly anymore)
  • Stopped with no lasting change to initial symptoms [ ]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: 2 months
  2. Response when you started:
  • Greatly improved [ ]
  • Slightly improved [X]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. 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 [ ]
  1. 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
Soils Story of Fin
#106

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.

  1. Name of the therapy/substance: oxycodone
  • Dosage: don’t remember
  • How often you took it: 2x/day
  1. Status
  • Still using [ ]
  • Stopped with no lasting change to initial symptoms [ X]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: Days [14 ]
  2. Response when you started:
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [ X]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. 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 [ ]
  1. 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
Opiates Effect on PFS
#107

“Pessimism of the intellect, optimism of the will.” -Antonio Gramsci

4 Likes
#108

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
#110

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