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  1. Interesting stuff, I'll be very interested to see the currently hidden common factors once you've got some researchers on board with your hypothesis. So many things mentioned on the PFS boards that relate to things mentioned on here; Also something I don't think I've read on this thread, but have read a number of times on CFS/ME threads is how people have benefited from a low oxalate diet. Any of the people on here who are good at doing diets that require strong willpower tried this?! https://www.westonaprice.org/health-topics/vegetarianism-and-plant-foods/the-role-of-oxalates-in-autism-and-chronic-disorders/
  2. @guitarman01 Yeah my bilirubin tested ok too (middle of range), but I'm having this test again this week. That defect would cause a build up of cholesterol in the liver as your bile acid is not able to effectively dissolve the cholesterol in the bile acid. One consequence would be an increased susceptibility to cholesterol gallstones, and I've already had cholesterol show up in the liver. Have you done a 23andme btw? If so when you search the raw data for rs8192877 (CYP7A1), are you an increased risk?
  3. Thanks Mario, I’m having some blood tests next week and I think serum cholesterol will be one, but if not I will request this. I think it’s not hard to see how this gene defect could cause many issues, and for my case I’ve already had cholesterol in the gallbladder show up on an ultrasound (it had gone on a subsequent ultrasound, and I’ve got another booked for June). Looking at some studies; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC151029/ In the following study, a methionine/choline deficient (MCD) diet is used to down regulate CYP7A1, so you would have to assume a diet high in methionine and choline would up regulate it? This seems to tie in with the ‘8 tips to repairing accutane’ video where they suggest choline from soy lecithin (as well as bile acids, and chinese bitters to increase bile acid production). Also Mario was able to recover from his sides with choline, and TUDCA (which is essentially bile acids). So in both cases they may have unregulated CYP7A1 and increased bile acid production http://www.fasebj.org/content/30/1_Supplement/934.1.short So has anyone tried taking the following things; Choline (potentially from Soy Lecithin) Methinione Bile acids TUDCA (or UDCA) I’ve tried all the above separately (other than methionine), and already take soy lecithin daily (only started recently after recurrence of gallbladder issues) but once I’ve had my blood tests next week I’m going to get on the methionine, jarrow bile acid factors and then TUDCA.
  4. Yeah did ask about tests for bile acid related stuff, but there aren't any available on the NHS. Interestingly I mentioned about my 23andme results showing some defective genes regards to bile acid synthesis and my doctor didn't even know what 23andme was which surprised me a little! I'm getting an ultrasound on liver/gallbladder and a shed load of bloods, thyroid panel, liver enzymes etc. Expect all these to come back within range, as per usual! @mariovitali you mentioned my 23andme had a number of SNP's regards problems metabolising bile acids - I know one is ATP8B1 rs10503019, any chance you would be able to let me know the others which are common as I want to be ready with this when I see the doctor again. Regarding cortisol that someone was mentioning could be low - mine has always come back within range, but at the high end of the range.
  5. That's pretty interesting, my gastrointestinal tests showed my strain of beneficial e-coli is completely wiped out. I did get a load of Mutaflor which is a probiotic to re-establish that strain, but after just one capsule it just makes you completely constipated so no mileage with that. All the discussion on bile acids is very interesting though. It's probably more than a coincidence that Mario was able to mitigate his sides with TUDCA and choline, that 8 tips on accutane video talks about someone curing their sides with TUDCA and choline (via soy lecithin), the common factor amongst 23andme results is also of issues with bile acid synthesis (thanks to mario's trend mapping). From my personal standpoint I've had pains under my right rib since getting into this mess and had cholesterol showing in my gallbladder on an ultrasound about 5 years back. Last year I had a period where I was having gallbladder attacks, and couldn't eat fat at all without getting extremely ill - x-ray and ultrasound carried out at the end of this period showed all clear, but it was likely a bilary duct obstruction, and more recently I've been having further issues with gallbladder/liver area pains, and pains in right shoulder, tightness on the right side of my chest - all symptoms of having 'gallbladder/bilary sludge'. Seeing the doctor this week, so expect another ultrasound and bloods. Interestingly at the end of the 10 day or so period last year when I couldn't eat fat (actually ate very little other than cold jacket potato and sauerkraut) after that (which I believe was a blocked bile duct) I was almost completely symptom free for 2 days in terms of sexual sides - the only time in 7 years post tane. Didn't last unfortunately, but may be an indication of where the issues lie.
  6. @mariovitali Thanks for sharing and putting in the time and effort to compile this info, I'll have a good read through tonight!
  7. Do you know specifically what was involved in this treatment? I.e. exactly what supplements he took, were these administered orally or via IV for example? I read the link you posted above about the protocol but the details are vague with regards to the actual methods.
  8. This sounds like it could be very promising! I'm guessing you will go ahead with this protocol based on their recommendations?!
  9. Gut health is almost certainly a consequence of other issues, most likely impaired methylation being the main one. Look at all the articles on methylation and MTHFR - gut health is impacted, but the practice is to try and optimise gut health in addition to a methylation protocol, not instead of. @TrueJustice you've had every test under the sun - have you had glutathione and SAM tested? I'd be amazed if everyone on here didn't have low levels of both. Would be amazing to get a trial done like the one I posted further up this page, but on accutane sufferers.
  10. I'd love to see a study like this done on accutane sufferers! Clearly methylation is screwed up, just like with similar conditions such as CFS, PFS etc. Some great results though, and I think many people could improve accutane sides with a similar regime. I've had some success and continue to take an active B-vit daily, but I do have issues with some of the supplements required; http://www.prohealth.com/library/showArticle.cfm?libid=16138 Details of the supplements used in the above trial http://www.prohealth.com/library/showArticle.cfm?libid=16338 Has anyone been tested for glutathione or SAM levels before? I think this would be extremely interesting, and I'd expect them to almost certainly come back low. Much more in depth info on methylation protocols here; http://howirecovered.com/active-b12-therapy-faq/
  11. 10mg/day for 30 days and I'm still I'm stuck with the sides 7 years later. I don't think dosage is really a factor, it's likely a genetic susceptibility. I think there are far more people out there who are affected by this drug but just don't realise it because they're told by derms and doctors that there are no long term side effects. Many people are also kids when they get prescribed this poison so they may never realise that they would be a very different person had they not taken it and think their status quo is just 'normal'. Unbelievably sad.
  12. Do you recall anyone getting b12 shots that's posted on this thread? No pretty sure I've not read anyone whose tried that. Could be worth a try as part of B12 therapy including the other B vits. I've been taking a B12 both as part of a multi active B-vit daily for about a year, and some additional MB12. AB12 makes me fatigued. 23andme is a cut-down DNA profile, it's not the complete map. I believe that is possible, but I would imagine it would be at a high cost, and I'm not really sure how useful the additional data would be. Really I'm surprised that study above regarding specifically talking about "SAM supplementation may be an effective therapy for both the mitigation of retinoic acid-related side effects" surely everyone should be all over that?!!
  13. The above is the pre-text to this study which was conduced the following year (2013); http://lib.dr.iastate.edu/cgi/viewcontent.cgi?article=4063&context=etd It's been posted a couple of times, and is what led me to try SAMe initially, although I wasn't taking any of the required co-factors needed to maintain an effective methyl group metabolism so it was obviously a waste of time, but I've recently got SAMe again, and will be taking it alongside the suggested co-factors this time. One massive issue with this thread is people will take a supplement with no co-factors, and not in the required dose (Im as guilty as anyone in this respect), and then post on here to proclaim that 'supplement x doesnt work' etc. However I really think one of the best hopes is a methylation protocol including all the sups such as active B-vits, folate, SAMe - it's just very difficult to get methylation protocols right as it requires so much trial and error. http://howirecovered.com/active-b12-therapy-faq/
  14. That's good to hear you've experienced some positive effects from it! The fact pregnenolone is made from cholesterol is also what caught my attention initially when reading into it, as my cholesterol was found to be extremely low when I had gastrointestinal testing done (probably down to issues with bile acid metabolism). The second thing that really interested me is when @hatetane posted a link to a study showing that THC in cannabis 'significantly increases pregnenolone synthesis in the brain'. From personal experiences trying RSO and vaping weed I found when stoned I also noticed increased sensitivity, libido and orgasm (often to a significant degree). Bearing in mind the only full recoveries on this thread (besides one from fin microdosing) are from using RSO. Maybe the weed induced increase in pregnenolone is the reason for this. I had assumed it was because weed is an AR5 inhibitor (which I understand preg,is, and the increased sythenesis of preg in the brain from the THC could account for this). I've no idea how much dosage of preg as a supplement would be equivalent to a high dose of RSO, but I'd guess quite a lot over a fairly long period. Looking at the RSO recoveries; - accutaneispoison - fully recovered over 3 months, taking about 50g+ in total. Improvements after 1 month - taneabomination - fully recovered over 5 months taking a similar amount. Improvements noticed after 3 months - otto - recovered sexual sides using RSO over I believe around 6 months From what I've read it's important to get good quality pregnenolone otherwise it's ineffective, but I'm definitely going to give this a go at 150mg/daily or more (studies showing safe up to higher doses, 500mg/daily)
  15. Are you taking pregnenolone in addition? Been reading some really good things about it in higher doses (50-150mg daily), someone here using it alongside TRT and getting some good benefits. Someone else on the same thread saying it's improved sensitivity https://www.excelmale.com/showthread.php?7484-Pregnenolone-and-Libido
  16. High dose pregnenolone should result in an increase in testosterone without aromasing into estrogen, one of the PFS guys who seems to really know his stuff (and seems to be managing his sides quite well, essentially through research and supplementation) states the following to someone asking why everyone isn't doing 150mg/pregnenonlone daily; http://www.swolesource.com/forum/post-finasteride-syndrome/3190-gonadin-2.html This could be well worth a look, especially for people who are specifically attempting to boost T
  17. Anyone tried a high dose of pregnanolone before, i.e. 50-150mg daily?? Someone else was on about this recently, and I’ve just been reading some more on swole source (PFS guys). Suggested dosage to get benefits is like 150mg/day, whereas I’ve just dug out the bottle of this stuff from when I was taking it and it’s 10mg caps, so probably nowhere near enough. http://anabolicapex.com/2017/02/04/pregnenolone Studies have show this is depleted by taking finasteride, so chances are it is also depleted in our cases. It higher doses (50mg+) it lowers cortisol and estrogen, and is essentially a building block for other hormones including testosterone. Also not sure if anyone has seen this Feb 2017 Finasteride study on the long term effects. Pretty interesting read, and it’s good to see more in depth studies like this, specifically on the persistent sexual sides; Safety Profile of Finasteride: Distribution of Adverse Effects According to Structural and Informational Dichotomies of the Mind/Brain http://sci-hub.ac/10.1007/s40261-017-0501-8
  18. This is probably the best info I've seen on methylation protocols, it's a long doc but its worth a few reads to get your head around it. http://howirecovered.com/active-b12-therapy-faq/ See what Mario comes back with - I'm not sure of all the defective genes that seem to be in the trend for sufferers, but it'll be interesting to know if you also 'fit the profile', so let us know!
  19. @Kynarr I'd get the raw data over to Mario, just the text file you download from 23andme. It's anonymous. I don't know exactly all the defective genes in the 'profile' of sufferers, but the more data he has the better! It's so much more than taking just methylofolate though isn't it, that's like saying you just need petrol to make a car engine run, but there are many other co-factors that need to be in place, in the correct quantities, and in the right order. Methylation protocols are difficult to follow - I've had some success with lessening brain fog, but I always hit issues with some of the required co-factors, e.g. adb12 gives me really bad fatigue (I mean really bad, like I'm exhausted when I wake up, and have to have naps all the time), and methylfolate gives me chest pains after a while), but these are probably things that could be overcome by adding the correct amounts of the required co-factors, it's experimentation. Have a read through this (a few times..) it explains things well, but it's not easy and just taking a random handful of some of the required supplements won't get you anywhere; http://howirecovered.com/active-b12-therapy-faq/
  20. There is absolutely no doubt that the liver and bile flow are factors in all this, and this ties in with gut health and so on - it’s all related, it’s just as yet unclear as to exactly what the root cause is. DNA profiling probably offers one of the best chances to try and find a trend amongst people who are suffering from accutane sides, PFS, and other related conditions. Mario Vitalli has been collecting 23andme data from sufferers, including myself, and has been using software to look for trends. So far he has established that there is a trend amongst sufferers which appears to be with the sulfation pathway. This is not only a major detox pathway, but is also needed for proper bile acid metabolism. Information on one of the defective genes I have is below, and no surprise to see associations wth cholostasis - this could also tie in with that ‘8 tips for accutane’ recovery video on youtube which specifically mentions treating colostatis using TUDCA and chinese bitters for bile flow. http://www.malacards.org/search/results/ATP8B1 Everyone should get a 23andme DNA test done, and provide the data to @mariovitali. It's cheap test and it's worth it. Anyone who has the data already, please provide this to Mario. This PDF explains Liver Detox pathways extremely well, and includes suggested supplements, but specifically looking at sulfation; http://balancedconcepts.net/liver_phases_detox_paths.pdf Also the above possibly goes some way to explaining why cortisol is usually so high post-tane. My cortisol was right at the top of the range, so if the pathway that neutralises this hormone is compromised then that could be a factor.
  21. @mariovitali Good to see you on here! I followed your thread on Phoenixrising for some time - are you still able to mitigate your PFS sides with your supplement stack? I started on B12 therapy/methylation protocols following that thread, but always hit issues with some of the supplements, i.e. adb12 gives me really bad fatigue and methylfolate gives me chest pains. I'll dig out my 23andme and get the data over to you. Do you want the raw data, or pre-processed by Genetic Gene etc?
  22. This sounds quite promising, and if it's helping with digestive issues I'm wondering if it would help normalise gut flora, and I'm assuming the absorption of nutrients would be improved. Anyone with sexual sides tried LDN? According to some studies it can be beneficial; http://www.peaktestosterone.com/Testosterone_Naltrexone_Erectile_Dysfunction.aspx