Yeah dude but he certainly wasn’t recovered as he yo-yo’ed between crashing and recovery FOR TWO YEARS. Like TNTW said, each person’s possible recovery is very unique and no amount of days or symptons can explain it (the silver bullet - idea of recovery).
Jesus christ dude, avoid alcohol like it’s a plague. Just be in the sure side and not in the russian roulette side!! Idk if you knew about this but lot of people got a backlash/crashed after taking alcohol. Regardless, it’s certainly not healthy for us in any way.
I’ll make some final sort of update within few days.
can i put the 170g’s in a blender with some water and drink the juice while throwing the residues that floats on top away?
i believe its mostly just broken cell walls right? or is eating the entire stuff critical for dolichol consumption?
Tryingnottoworry: I just spent the last hour or so reviewing this entire thread, page by page, whereas initially I’d just skimmed your initial post.
As I was reading the thread, I kept fearing that all-too-common PFS/recovery-regression was around the corner…but it looks like you’re adjusting, you’re doing well, despite some minor setbacks. Good for you! Hope this keeps up for you.
I Just want to commend you and thank you for putting the time you do into your research and the summaries you post, they’re very helpful and appreciated.
I don’t know if this is the answer, but I’m off to a walk to Trader Joes to pick up some spinach. Here goes nothing!
I hope you don’t mind but I forwarded (by email) a summary of your theory to Professor Marc Bouloux here in the UK (recognises PFS and is mentioned on this site), I had been in email contact with him before so I knew he was quite good at responding.
Basically I forwarded your edited first post on this thread to him and just asked his opinion… I chased him up and have just received this response…
Its not a totally crazy hypothesis and one which could be tested by scientific means, in in-vitro systems… The difficulty is that patients with this condition have experienced an idiosyncratic reaction , whereas this hypothesis would lead one to predict a dose dependent process. I think that disturbance of glycosylation would lead to far graver consequences, than is actually observed. As stated, hundreds of proteins are post- translationally modified (eg my amidation, glycosylation etc) , and their function would be expected to become compromised in a dose dependent manner on taking these 5 alpha reductase inhibitors.
Anyway once again I hope you don’t mind me taking this step as I don’t want to step on any toes, I was just curious as to his opinion.
It seems that everything we put forward seems “unrealistic” but something has to be right. The fact is that PFS is pretty much unprecedented. Prof. Bouloux is a great guy, keep us updated on any other opinions he has to offer.
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I have mentioned this to him already (well, preg). He’s not convinced. He says he’s not convinced we even would absorb enough via the creams to make any true effect (this is wrong though, you’ll see countless before and after bloods on allthingsmale forum) and that the guys over in America pushing this stuff probably have a financial interest in it (again, in my experience this is wrong). Ultimately, Prof. Bouloux just doesn’t beleive in preg and it clearly isn’t a part of his protocols.
I know of a patient who came to him from Hertogne (sp) who had the patient on preg and other stuff. Bouloux said that the protocol Hertogne had him on was “bonkers”. lol.
I’m really itchy around my ankles…just cannot stop scratching, and there are some hives…I might feel a slighty bit itchy there now and then…and I had a LOT of it during my crash/breakdown (along w/ hives and itchiness in other areas—crotch / pelvis, shins, etc)…but I don’t generally experience this phenomenon any more…
is this spinach related? I had an entire bag over the course of the day. With the last bit a couple of hours ago…this is day 2 of spinach.
could be a total fluke…but curious if anyone else trying the spinach has experienced anything similar…
I’m off from it now. Didn’t cure my sexual problems and it’s too early to tell whether it helped my cognitive problems. I did feel good/healthy while on it! This is for me only and i suggest everyone else give it a shot anyways. I do believe it can help cognitive ones and it’s better than tyrosine that might inhibit your certain androgen related production mentioned earlier in this topic.
Well i guess the PFS symptons are unique and i could stomach tons of spinach like it’s nothing so it’s hard to tell. I’m unique among with Tpfen in that regard. Perhaps mal-absorption problems…
It’s hard to imagine it could be bad - to my understanding there are no 5-alpha reductase inhibitors in spinach, only tons of veggie A-vitamin (like i said before, only sympton would be a temporary bronzing of the skin) and folic acid (not bad to my understanding?) plus uh iron absorption hindering stuff? for some reason related to this my dad told me to drink milk with it (for calcium). It has less iron than most of the dark green veggies. Then there is dolichol.
Uh well you can keep up with the dosage or either increase or decrease it to see how it affects you.
Thanks for the posts and links, guys. I think it was a fluke, I don’t know; it hasn’t affected me again.
I’m not completely taking the spinach out, but I’m mixing in more things. And hitting the pause button on all meds & other elements of my current regimen as liver tests were spiked.
Hey guys, sorry for the lack of updates. I’m still doing great, and I’m starting to feel more optimistic that this will be a lasting recovery. I’ll try to make a more detailed post when I can find some free time, as there’s a lot of things I need to go over.
I’m not sure if there’s much point continuing? I honestly enjoy the smooties its just the hassle of getting to the supermarket every couple of days, and the risk of taking too much spinach.
Thank you for forwarding this to your doctor! I’m very interested in having medical professionals study this information (particularly cellular biologists), and I’d encourage everyone to show their doctors the latest information about SRD5A3. I’ll do my best to address his comments:
I disagree, our condition is most certainly idiosyncratic. Finasteride has a near flat dosage response, so increasing or decreasing your dosage would yield minimal differences. There is probably something different about how our cells function which sets us apart from those who are immune to getting side effects from finasteride. For example, new studies have shown that some mammals may have alternate dolichol pathways which prevent dolichol deprivation from occurring, despite the dysfunction of their SRD5A3. It’s possible that we may lack these alternate pathways, and without them, our cells were vulnerable to dolichol deprivation through the action of finasteride inhibiting SRD5A3.
Indeed, those with congenital disorders of glycosylation are substantially sicker than we are, but I don’t think we share the same sort of dysfunction. The major difference is that we do not have a defective SRD5A3 gene (which causes CDGs), we were fully developed post-pubecant adults when we became sick, and our syndrome was caused by a 5AR inhibitor, not an inherited cellular defect. Our bodies should be functioning normally, but this drug may have tweaked something along the glycosylation process. The extent and scope of glycosylation disruption that occurred with us is unknown, but glycosylation disruption is almost certainly involved to some degree, as dolichol is a required component of glycosylation. It’s also possible that our syndrome is the result of a defensive mechanism (such as the unfolded protein response, which can alter gene expressions) which may have tweaked something in order to avoid a glycosylation disorder. The sheer amount of complexities are mind boggling, but glycosylation is almost certainly involved in some respect.
Welp, sleep time for me. I’ll try to get to everyone else’s questions when I can, but I really wanted to respond to this one first. Having doctors and researchers study this is a pretty big deal. I truly believe SRD5A3 is the missing link we’ve all been waiting for.
