M_C's story - 11 years of PFS

Member Stories
#78

I’ve been testing positive for blastocystis hominis (a parasite) a few times the last couple years, and this year I decided I’d try to get rid of it, after reading some anecdotes about spontaneous recoveries after clearing parasites.

So – I embarked on two courses of antiprotozoal/antibiotic medication (the first one wasn’t effective) – (alinia, septra, tinidazole, paromomycin), and two weeks ago the blastocystis test came back negative. So that’s good news. What’s less good is that it seems to have made no difference on PFS.

Also bad news is that paromomycin worsened my tinnitus (a fairly common side effect).

#79

PFS could be caused by hidden problems you had prior to taking fin, in his case it was parasites and two days of antibiotics cured him of PFS. We might also have parasites but our hidden problems which came back to bite us when we crashed on fin were obviously different

#80

Hi @vincentv - i haven’t seen or felt any change in testosterone levels. I wouldn’t be opposed to doing a short trial, but I don’t think it’s likely to do anything.

#81

My 8 year PFS-anniversary passed a few months ago, and enough as changed that I thought it would be worth giving an update on what’s going on with me.

8 years… With PFS-impaired memory, I don’t think I fully grasp how much time that actually is. I have no nostalgia or a feeling that events happen a long time ago. As I’m sure many are familiar with, I’m living in a kind of dull present moment, with limited grasp of either past or future. Since I can’t feel time through subjective experience, I rely more on observing changes in the world around me. Friends who have gotten married (some twice), family members who have been born and died, political changes… and it’s only by reflecting on these events that I can understand that… well, 8 years is a fucking long time.

Has anything changed for me? Yes, although not as much as I’d like. In the last year, I’ve made some personal changes, tried some dietary interventions, and some new drugs.

I’ve already mentioned that since 2010, the biggest improvements have been mental (cognition, less brain fog) and physical (energy, better physical condition due to exercise), better and more frequent erections, less “throat tightness” and partial restoration of brain/penis connection. Some thing are the same or worse, like libido (non-existent), penile sensation (no improvement), and anhedonia. (There are also many other symptoms, but those are the main ones).

I made the painful decision to leave my girlfriend last year – I just felt like I wasn’t present in the relationship, and just felt overwhelmed with tending to the needs of another person when I had enough of my own issues to deal with. Moving to my own place and having the time and space to organize my daily routines the way I want has helped a little. Mainly, it’s been easier to dedicate more time to meditation, and to healthy eating/exercise.

I also tried some new drugs. I did a round of IV ketamine (mostly for chemotherapy-induced neuropathy), which was fun, but didn’t do anything for PFS (or neuropathy). I also tried a low dose of testosterone cypionate, but that made me feel extremely tired, sleepy, and just plain off, so I didn’t dare to continue.

I took a vicious cocktail of antifungal/antimicrobial medications to get rid of Blastocystis (paramomycin, tindamax, alinia, septra), in order to put to rest my suspicions that I might have some kind of diagnosable stomach problem (I had previously ruled out SIBO and leaky gut with tests).

Around October last year, I really felt like I was on to something when I read about the connection between SHBG and insulin, so I spent the next few months increasing my own insulin production, basically eating a ton to gain weight (which is hard to do in a healthy fashion), doing weight training, and meditating. I also started taking a supplement called Nitric Balance which is great for cognition and overall energy. This combination, though it seems simple, put me in the best shape I’ve been since this all started. I thought I had really found a reproducible strategy that I could keep building on.

However, I became greedy and careless and added maca to my supplement list (already doing methylation supps, BCAA, and l-glutamine), which was an unmitigated disaster. Waves of anxiety washed over me like I haven’t experienced in many years, and I saw my penis shrink and I got the “hard flaccid” state that some have described (I know what you guys are talking about now!). Since maca apparently shrinks the prostate, this might lend credence to the idea that PFS is related to prostate tissue change. It’s been a couple of weeks now, and the maca-damage is still there. I’ll keep doing my bodybuilding routine, and hope that I can regain what maca took away (and go beyond).

When doing the recent PFS survey (awesome initiative, BTW), I returned to a blood test I did right before I started my cancer treatment, and saw something interesting. My T and DHT was much higher than normal, and SHBG had gone down. I think this was because my cancer tumor releases large amounts of HCG. While I don’t remember feeling a lot better during this period (how could anyone awaiting an orchiectomy feel good?) it is possible that I would’ve felt better if I had given it more time. This is why I’m considering HCG as an addition to my regimen.

I’d also be open to trying insulin injections, given how weight gain has been so helpful.

Life is always a struggle, but this struggle has challenged me beyond my wildest expectations. The fight continues!

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PFS from Saw Palmetto. Made Improvements. 85% recovered
PFS from Saw Palmetto. Made Improvements. 85% recovered
Fat malabsorption and associated symptoms
#82

What type of methylation supps exactly? I recently had a severely bad experience with some B-vitamins typically used in these “methylation” protocols by CFS patients to regain energy and mitigate depression:

Tried it as a “shot in the dark” treatment, assuming in couldn’t hurt, and really regret it.

btw- thanks for filling out the survey!

#83

I found that I had a homozygous mutation on the MTHFR 1298C gene, so I did a specific protocol that involved starting with potassium by itself, and gradually introducing other supplements. Apparently there are many pitfalls, but I’ve only seen benefits from it. I’ve gradually cut out things over the years (like sam-e), and found that I do fine with methylcobalamin, 6S-5-MTHF (1mg), and Thorne’s ‘Methyl Guard’ supplement. If I go without it for 4-6 weeks, the brain fog usually comes creeping back.

It’s so interesting that almost every remedy has some examples of very positive and very negative outcomes. Aromatase inhibitors, progesterone, probiotics, milk thistle… they affect people in wildly different ways. I thought methylation was one of those harmless ones, but apparently not! There’s a horror story about almost every possible supplement or drug on here. Be careful, folks!

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next a stupid guy...but i believe...
#84

It’s been a while since I’ve updated my thread here, but the time felt right to share some things I’ve learned over the last year. Perhaps someone will find it valuable.

I’ll try to keep the theatrics to a minimum and keep this short – the beginning of the year started strong. I had a really good exercise routine (weightlifting and yoga) and had upped my carbohydrate intake (by a lot) and was gaining muscle slowly, but surely. I was trying to use a high carb diet to decrease insulin sensitivity (kind of the opposite of what you normally want to do) in an attempt to lower SHBG, which is correlated how the body responds to insulin. This seemed to work well – I was feeling better, and also saw that SHBG had dropped massively and a corresponding increase in free T. The problem was, estrogen had also increased dramatically, which manifested as tender nipples and an upper lip swelling (haven’t been able to confirm that swollen upper lip this is a symptom of high E, but it’s been mentioned on this forum).

The big setback came in March, when I started using maca root. After three days’ use, I suddenly got panic attacks like I hadn’t experienced in many years, and to my horror, I saw that my penis had taken on an hourglass shape, with even more prominent veins than before. There was also a bit of shrinkage and excess skin. Constipation worsened. My face changed within 2 weeks – larger pores, wrinkles, dark circles under my eyes, new folds appearing, the whole package. This was immediately followed by a nasty sinus infection that I just managed to get under control, 6 months later. The infection kept me away from the gym, which was really hard for me, since it was the main thing I felt had made me feel better.

In short, the hard years keep on coming. It will be 9 years of PFS for me in November.

Some learnings from this ordeal –

  • T, DHT, and E levels only seem only mildly correlated with my symptoms
    • In 2015, I had an HCG-releasing tumor that spiked my T and DHT, but it didn’t cause any significant change in how I felt.
    • When I got the high E, I felt the symptoms I mentioned, but those were not big problems compared to the other things I’m dealing with…
  • … but prostate size and/or prostate tissue DOES seem to affect symptoms
    • Maca root is apparently fairly good at shrinking the prostate (at least in mice). In this paper, finasteride was used as a control – https://www.ncbi.nlm.nih.gov/pubmed/28635053 . Probably a good idea to stay away from anything that’s mentioned in the same sentendce as finasteride. Wish I had done my research on this.
    • The paper that Axolotl found the other day also points to an interesting prostate-shrinking mechanism for serotonin, which could explain the symptoms of people with PSSD – Serotonin regulates prostate growth through androgen receptor modulation
    • So how do you increase prostate size? Testosterone is one answer, but that’s all I’ve found so far. Googling for “increase prostate size” is almost impossible because it seems like everyone else on earth is trying to reduce their prostate size, so every article is about things you can do to get a smaller prostate.
  • SHBG might be a red herring
    • If you have high SHBG, it might just be a sign that you’re a fit person who is unlikely to get diabetes. Low SHBG is actually a diagnostic marker for diabetes. So instead of chasing remedies or drugs that purport to lower SHBG, I’d rather try increasing T in the ‘normal ways’ – with a bodybuilder’s diet and weightlifting.
  • 5 months of NOFAP ‘hard mode’ did nothing for me

What am I doing next?

Now that I can exercise again, I’m going back to lifting weights. I’ll also be adding more protein and fat to my diet, and keep the carbs on a more moderate level. I’ll also do some trials of digestive enzymes, since my latest stool test showed very poor breakdown or absorption (or both) of both proteins and fats. I’ll try bromelain, which apparently can be beneficial for sinuses and inflammation in general.

#85

Did you feel better during those months? How was your energy, confidence and libido during those months? Did you have morning erections during that period?

#86

I don’t remember feeling different in any way. But I’ve read plenty of reports saying that it’s helped people, though.

#87

Yeah, I am one of those I think. I felt a lot better during my period on NOFAP. I wonder if maybe my problems are related to testosterone or other hormones.

#88

Just a quick update after a long pause.

Thanks to a recommendation from @John099, I’ve been doing the “DCT for pelvic pain” course for a few months. It hasn’t been a cure for me, but I’ve seen many other benefits:

  • I’m more flexible/injury resistant
  • I’m more “in touch” with my body - there’s a kind of kinesthetic intelligence that is greatly increased. Very cool!
  • 10% stronger erections
  • Slightly longer penis when flaccid

I don’t know if you’d consider these results worthwhile given that it took over 3 months of daily, hard exercise to see any changes. For me, I just wanted to try something new, and since I was in quarantine, I had the time to do it.

I’ve also tried joekools’ hCG protocol (250 iUs, 3x/week), but had to stop three weeks in because I developed shortness of breath and chest tightness. I had high expectations for the protocol, so I was pretty down when I had to stop. My best guess for why I started having chest tightness is that it’s some kind of asthma (asthma symptoms are hormone mediated). Interestingly, I also had asthma symptoms in the first year after I got PFS, when I also had really high LH. Increased LH might have been the body’s attempt to fix the PFS situation, in which case hCG would be the right way to go?

I have a lot of questions about the LH/hCG/asthma situation that I wish I had answers to…

I might restart the protocol with 150 iUs if the chest tightness goes away completely (it hasn’t quite gone away, after a month off hCG).

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#89

Hi @M_C

How are you doing these days?

I read your thread and I see you are still dealing with some gut issues. Out of curiosity, have you considered Fecal MaterialTransplant?

#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.

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#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

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#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.

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#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.

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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.