In it for the long haul?


#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!


#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!