oh wow so this is really recent.
tryingnottoworry, can you go on a long spinach diet (well, part of your current diet that is) and then report back about how steady your progress is? i’d imagine this as a part of non-glutein/allergin diet would be effective, heh.
basically if somebody could do this as human guineapig way with POSSIBLY regular bloodtesting on hormones then everybody else could get some use out of this, much like how JN’s and ithappens’ story highlighted on the thyroid/adrenal problems we might have.
Yep, I certainly plan on sticking with this diet for as long as it takes, as well as reporting any progress and scientific findings I come across. I’m actually allergic to wheat gluten (wheat bread gives me hives), so I never eat that stuff anyway. I’m trying to keep my diet varied with other healthy things I normally eat (as well as some vitamin supplements), in addition to the raw uncooked spinach. I’m skinny and it’s hard to fit so much into my stomach, but I don’t want to get malnutrition (in the general sense) by only eating one thing.
I’m too poor to get blood tests done and don’t have any medical insurance, so someone else on this diet would have to report their test results. However the fact that it’s having a positive effect on me would further suggest that our hormone/thyroid/adrenal/endocrine system in general isn’t the source of our syndrome, but a symptom itself of n-glycosylation deficiency caused by an altered gene expression caused by dolichol deprivation. So hopefully once normal n-glycosylation can be restored, the rest of the pieces will fall into place.
As far as how progress of day 4 is going, everything is going great! No testicle pain, no insomnia, I actually had a morning erection for the first time since… I can’t really remember anymore. Getting more spontaneous erections and random sexy thoughts, penis becomes erect at the slightest provocation of a visual/mental stimulus, erections are solid and easily maintained, and life is pretty much starting to feel normal again.
My biggest fear is how effective this treatment will be for the rest of you. I’m praying so hard that this is the answer we’ve been searching for for so long. The data would suggest that it should help everyone, but I’m just a video editor, not a danged scientist. I’m especially concerned for spstriken, as his syndrome is KILLING him. Please God, let this work.
I understand. Basically, i’d imagine a spinach treatment with uh
*seeing if the effects stop just like with most of stuff we use REGULARY
*playing with the intake to see if you can get too much? (this might be dumb i guess but basically i haven’t got my mind around these scientific studies in english since i’m suffering from the mental stuff and it’s in in bloody english! I’d just imagine that if it’s really the question of resetting the down/upregulation of dolichol production then i guess it would be good to try to MAKE IT HAPPEN somehow.)
*taking it as far as a month or similiar (god knows how long?) then stop to see if symptons reappear (to see if this is a life-long diet or similiar. i don’t think anybody with adverse symptons like sptriken (:/) don’t care about this anyways.)
I mean you could just keep taking it as long as you can if it’s a question of a STRESSED SYSTEM that needs some relief/backup for some time. I have no idea if possible desentizing could happen with supplying another alpha-reductase stuff instead of letting the body produce it on it’s own.
*also, have you considered juicing the spinach? Like making it into a shake. I’d imagine you’d get the same benefits/same amount of calories without your stomach getting FILLED all the time.
*alsoalso i don’t know if this is a good idea but consider adding LOTS of broccoli and pomegrenate juice to your diet too?! i don’t know a shit about these two other than supposedly being anti-flammatory which is DEFINITELY desirable along to get your body out of the chronic prostatitis and whatnot. nothing to lose etc!
However, i read somewhere over here that broccoli causes aromotization/increases estradiol which is NOT good at all. maybe use the search feature of this forum/google and find out about this?
basically gonna check this topic with great interest. hopefully you’ll provide to be succesful at least to yourself/you’ll find good scientific studies about this/etc!
Maybe I missed this but if your theory is sound by what mechanism do you think we crash? I know for me and others experienced 50% penile shrinkage literally overnight. I had a slight amount of shrinkage while on Fin, maybe 10% but always figured it would “go back” when I quit the drug, just like Merck told us…
I had 2/3 a bag of spinach this morning for breakfast. Will finish the rest today. So, we can basically eat anything within reason as long as we get a bag of spinach a day? I’ve bought 4 bags so I’ll do this for at least 4 days.
However this goes it’s always great to see people are trying things and doing the research to back it up.
I find this story very interesting as tryingnottoworry came up with the idea first and then tried a treatment based on it. Also raw food diets have had some success before.
The idea finasteride inhibits dolichol and its use is interesting - I have supported the androgen insensitive theory for a while now and I have to concede that there is no reason the same thing hasn’t happened except with the gene expression of not androgens but dolichol.
Could you give us a quick history of your story - how long on propecia? Did you crash? Sexual and mental side effects? Did you still have androgenic features?
One thing that could explain why you are being helped by it is that it contains tyrosine and other amino acids - people have had success with these before. Have you ever taken tyrosine or any amino acids before in large doses?
Thanks mate.
I really don’t know what to expect, but as long as it’s helping me I don’t really have a problem with continuing. We’d need to have a better understanding of the underlying mechanisms in order to make a proper protocol.
I’m not exactly sure what you’re asking, but I wouldn’t be supplementing SRD5A3 (if that’s even possible), as our SRD5A3 enzyme should be working okay. As far as the body possibly downregulating dolichol production due to exogenous dolichol intake, I’m certainly hoping it’ll do just that. If the endoplasmic reticulum calms down from its panic-mode and down-expresses the GPT gene, it could allow for efficient use of Lec35p and would potentially break the cycle of PFS. Even if it down-expressed too far, it would most likely end up normalizing everything eventually.
I suppose you could juice/blend the spinach leaves. As long as you’re not cooking it it shouldn’t really matter. I’ve actually done a lot of juicing in the past while dealing with PFS. My standby ingredients would usually be carrots, broccoli, celery, apples, and sometimes garlic and ginger. I was crazy desperate and would juice around 30 ounces at a time (it almost made me throw up a few times, but I drank it anyway). It gave me a little more energy, but nothing substantial, and no major relief from my symptoms. I also juiced 2 jumbo pomegranates a day for two weeks, but it did absolutely nothing for me.
Until we can have a cellular biologist/geneticist study an active PFS crash, I’m not sure if we’ll know exactly what happens. If I had to theorize, it would probably have something to do with the overwhelming stress on the endoplasmic reticulum which triggers the unfolded protein response (UPR), which then throws your gene expressions out of whack and can cause some of your cells to become suicidal. Maybe it underexpressed too far once things started coming back online? Maybe it overexpressed too far as a defense mechanism? Maybe the ER was too overcrowded with unfolded proteins to sustain normal function? It’s hard to say at this point.
Most likely. As long as you’re getting dolichol, it shouldn’t matter too much what else you eat. Just avoid alcohol and caffeine, as alcohol will make you excrete more dolichol, and caffeine interferes with the n-glycosylation process:
Actually androgen insensitivity doesn’t appear to be mutually exclusive from dolichol deprivation, as dolichol is produced further up the same pathway as cortisol. If dolichol is disrupted, it could potentially disrupt everything further down the pathway, which could possibly cause some form of psuedo-lipoid congenital adrenal hyperplasia (or some similar condition). A cellular biologist could probably explain the connection better.
I was on 5mg of finasteride back in July of 2009 for only two days for a minor prostate related issue (I don’t have hairloss). The first side effect to hit me was this intense head rush, followed by erectile dysfunction, then a bunch of other crazy stuff. I googled for the side effects I was having that weren’t listed in the official information, found propeciahelp.com, and italysideeffect convinced me to quit taking it. The next day I got substantially worse, and by the second day off my symptoms were incredibly severe. Muscle pain, neck pain, headache, horrible testicle pain, blurry vision, impotence, burning penis, nausea, vertigo, tremors, near-complete lack of energy, sleep apnea, no appetite, I was writhing and moaning in agony and probably more stuff I’d rather not think about. I remember taking an hour to eat a bowl of cereal because I had to take 5 minute breaks in between lifting the spoon. I don’t think I ate for a week. I couldn’t walk across my living room without having to stop and lay down on the floor. I was bedridden for days, and my body kept fluctuating through so many different combinations of symptoms. There would be times when I couldn’t handle any measure of stress without going into a panic attack (like my cat meowing, or dropping something), other times my emotions would get shut off, or I’d have episodes of brain fog where it felt like I was having a migraine. The severity of it all would come and go, but my body was totally wrecked. I nearly lost my job at that point, because I was just too sick to do anything. Finally by December I started to actually feel better, and by February I was well enough to continue on with my life, for the most part. I had some “mini-crashes” every few months, but my body seemed to be able to get better regardless. At one point I actually felt nearly 100%, but it slowly started to decline over the course of a year. Sexual problems started getting more pronounced, testicle pain started happening again, emotions were getting duller, libido was dropping, penis was getting colder, ejaculate was ranging between watery and extremely thick, orgasm eventually ceased to produce any pleasure, and my overall energy kept dropping. Eventually my body sort of “settled” into this state of decline, and I wasn’t fluctuating or getting any better like I usually would. That’s where I was a couple of days ago, now I’m nearly back to 100% again.
I don’t believe I’ve taken any vitamins with that stuff in them before (as far as I know). I have eaten raw spinach from time to time in the past, but never this much at once.
Change your name to Popeye.
tryingnottoworry- how are you feeling?
Boston332- any changes for you with this?
Well, basically i’ll (we’ll?) be looking into this topic for the next whole month to see whether dolichol treatment provides to be helpful so i don’t know. I guess it’s fine if this topic is updated frequently if you want to but it’s fine if these guys won’t. SYSTEMATIC.
What is the exact amount (grams? leaves?) of spinach you are taking tryingnottoworry? I don’t know this 3/4 bag measurements, i don’t know if they are being sold like that over here.
You got a one hell of a story dude, jesus christ. Sorry about my post, there was lot of questionable ideas in there since i’m pretty new to all this. 
also friggin brainfog et all in the evenings.
I’m feeling great! My energy is normal, my mind is clear, my genital numbness is continuing to fade, libido is rising, and I’m starting to be able to have enjoyable sexual fantasies once again. My poop has been a bit soft and green, but that’s to be expected with eating so much spinach.
Heh, my dad said something to that effect.
I’ve been thinking about what 19 said about people having success with tyrosine. Just what is tyrosine?
Used in protein synthesis? As in glycosylation? What form of glycosylation?
What the heck is a “Golgi apparatus”?
I see, so N-Glycosylation occurs in the endoplasmic reticulum, and then the next stage is O-Glycosylation which occurs in the Golgi apparatus. Dolichol is involved in N-Glycosylation, whereas tyrosine is involved further down the protein process with O-Glycosylation. So if you inhibit N-Glycosylation through dolichol deprivation, would it inhibit tyrosine’s function?
Bingo. What role does Receptor Tyrosine Kinase have?
Well that could explain the broken hormone receptors (or at least part of them).
No wonder some people feel better when they supplement tyrosine, it’s restoring a piece of their glycosylation dysfunction. However supplementing tyrosine would only serve as a symptomatic treatment, and would not solve the underlying cause (though it IS much closer to the root cause than most other treatments). Even with tyrosine supplements, your body would probably not be able to sustain proper o-glycosylation function if its underlying n-glycosylation continues to be out of order.
Sheesh this is one long rabbit hole, but it all points back to dolichol deprivation.
Each bag I’ve been eating contains roughly 170 grams of raw spinach leaves. This is just what I started out with, as one bag a day seemed to be a reasonable starting point. Different people may need to eat more or less than a bag a day to have a proper effect, as this protocol is brand new and I only have myself as a baseline reference. Though if you want to eat more than a bag a day, I’d probably suggest blending or juicing it, as your jaw would probably start to get tired with all the chewing that would be required. Also whenever you decide to stop the protocol, I’d strongly suggest weening off of your spinach intake through the course of two weeks. I doubt the dolichol differences would cause another UPR, but you certainly wouldn’t want to shock the ER into overexpressing GPT again.
I find this idea to be something that should be explored.
Will be starting this protocol.
At the moment I think there are 3 potential theories: 1) This one 2) Oscars one about the phantom DHT and increased metabolism 3) the epigenetic idea of androgen insensitivity.
In the last 3 and three quarter years I have tried everything I could from waiting to resveratrol to progesterone cream, prednisolone, cytomel, Xyrem, antibiotics, broccoli treatment, l-acetyl cartinine, tyrosine, NAC, liver detox supplements, bile acid (don’t know why i did this), cialis, tamoxifen, tribulus and so far only:
- antibiotics made a difference when on them. I didn’t respond to tyrosine or anything else in a useful way. The stories about tyrosine for reference are that they helped in big doses - a complete reversal of symptoms - however this didn’t last forever. If you hunt around you can find the stories I’m remembering.
Now my hormones are in the perfect range except for Vit D and prolactin (which was marginally raised once). I shouldn’t feel like this with normal hormone levels. That makes me think.
Something more fundamental could be involved - like in this idea. Now one problem with the androgen insensitivity idea is that if my prostate is insensitive to androgens then why is my scalp not so - I am still losing hair. The idea of different places being affected differently could explain this but it could be that this perceived androgen insensitivity is due to problems further up stream.
So i implore people to give this treatment a go. Its cheap and has helped tryingnottoworry.
Antibiotics made you feel better?
It would appear that certain antibiotics will actually promote dolichol formation, which could explain why they made you feel better.
Bacitracin is easily available as a ointment. Not sure how much you’d have to spread on to affect your dolichol levels.
Well, I don’t think antibiotics would be an effective cure in our case. They may increase dolichol formation and improve our symptoms while on them, but that wouldn’t necessarily convince the ER to down-express GPT. The point is to convince the ER out of its panic mode and allow it the opportunity to re-adjust its gene expressions, not try to tweak the product of its dysfunctional process.
I don’t remember who was it but some member went through a hell/pleuthora of antibiotics due to the incomptetence of his doctor. I recall they were trying to treat prostatis with it.
He reported that initially the anbitiotics actually got him into pre-finasteride - time state but then the antibiotic’s effects started to wear off. So antibiotics are DEFINITELY just a band-aid. It’s curious that what in those antibiotics did something to the PFS sufferer so that his symptons actually got cured temporarily? Dolichol synthesis? Anti-bacteria to prostrate?
The person made no conclusions what in the antibiotics was helping him, instead of relying to the doctor. Eventually came here to post that there are no cures for PFS.
I think this story can be found somewhere in the recovery section! I’m not sure. You could give it a try.
I’ve been doing a lot of research on this.
It’s very interesting to me.
I am trying to formulate a request to Solagran about Ropren, their Polyprenol-Dolichol medicine.
solagran.com/index.php?com=kapcsolat
It is quite expensive, but no prescription necessary. If they realize a possible new market for this we might be abble to get tests done for them.
Anyone care to help?
P.S. In case anyone wanted an update on my situation in the meantime. My old therapy lasted 4 months. Now I take a new supplement Hypertest by Axis Labs, 4 pills before bed every night and I can get an erection without any assistance everytime I try. My libido isn’t really half what it was. But I function without cialis or viagra and that means a lot to me.
Anyone not having luck with this? Or am I the only one? I’ve got soft green poo but no change in symptoms. I still feel sicker than a dead dog and I am several days into the diet
Hey, give it more time. I was really suprsised that for tntw this worked so quickly. You should just stay on it for a longer time or increase the amount (the latter being an uncomfortable option but juicing/making into shake should help this).
There is a pretty good chance that your dolichol levels are fine/are uninterrupted so your problem isn’t in that… or GULP medical jargon/things i don’t know properly - there could be a problem with your dolichol levels but there are eg. other overlapping issues to fix or something similiar, non-apparent reason. I’m sure tntw could theorize about this better than what i am capable of!
I guess what I am trying to say is I’m not seeing a whole lot of success here. I mean tntw is doing well, but I don’t see anyone else reporting anything positive and I know all of us would be screaming from the rooftops if something worked for us.
Wow, I didn’t realize that was available to the public! It looks like it costs around $1000 a month though, which is wayyyyy out of my budget. Also feel free to post any of your research in here, I’d like to see what you find!
I’m sorry it’s not giving you any improvements so far. This is all still in the experimental stage (the spinach diet has only been around for a week), and I don’t have any data to recommend how much you should be eating or for how long. If the root of our problem is indeed an overexpressed GPT gene which is hindering Lec35p, thereby causing inefficient utilization of dolichol, it’s possible the treatment may not be effecting you as quickly as it effected me if your GPT gene was expressed higher than mine. While adding exogenous dolichol will most likely increase overall dolichol utilization, the higher Lec35p is being hindered the less effective any of your available dolichol would most likely be, so it may take you longer/need a higher dose to have any sort of change (it’s like if I started a car in 2nd gear, and you started it in 3rd). But since it’s still in the early stages, I’d recommend to keep going on your current diet for about a month and reassess it from there. Also which type of spinach are you eating?
My libido feels like it’s almost at maximum, as it’s starting to become annoyingly distracting again (I can’t believe I used to take this for granted). Genital numbness is almost completely gone as well, and erectile function seems to be just fine.
I don’t think this is related to PFS or to the spinach diet, but I may as well mention it in case it’s something that others happen to experience: I started getting a migraine yesterday (as I’m prone to getting now and then) and had to take some excedrin. My head felt unusually dizzy afterwards, and it’s only starting to wear off today. So aside from being sick from a migraine yesterday, I’m still doing great.
I also tried blending and drinking a bag of spinach this morning to see if it would help speed the process along, but it tasted like garbage. I’ll be sticking to salads for now.