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  1. My cholesterol is also 'undetectable', I also thought this was unusual, and according to the test notes it says " Non-elevated levels indicate adequate fat absorption or a lack of dietary cholesterol". Triglycerides were also undetectable on the same test, which again seems odd. This was from a Genova Diagnostics gastrointestinal test. Vitamin D is one of the few things I really notice if I stop taking, always take 10,000ui D3 every 2 days. @ HateTane yes boron has been tried by quite a few people, I've never really noticed much from it and I've taken loads. Some testosterone boosting herbs do clearly work to increase T, but after a while it seems to just raise estrogen and you start getting symptoms of high e. I've also tried estrogen inhibitors (erase pro works well and is herbal), but it only improves things to an extent and isn't a long term option really. Someone really needs to see if they can get acne.org to sort a sub-form here as this thread just goes in circles as clearly not everyone can spend days reading the whole thing to see if topics have already been covered. The extract I posted further above from Rich Van K is probably the most interesting thing I've read in a while though. I'd probably say that's correct, it's clearly the epigenetic changes that the drug induces which are what causes the persistent side effects. More here from Rich Van K You mentioned Roaccutane. I've probably heard from four PWMEs now who had this in their history. In the U.S., it's just called Accutane. I don't know if this is relevant to your case, but it is known that one of the effects of Roaccutane (also called isotretinoin or 13cis-retinoic acid) is to raise the expression of the gene that codes for glycine N-methyltransferase. This enzyme is the "safety valve" that normally prevents the SAMe to SAH ratio from going too high, and it works by taking methyl groups from SAMe and putting them on glycine to form sarcosine. The sarcosine then gives the methyl groups to tetrahydrofolate to form 5,10 methylene tetrahydrofolate, which can then be used to make thymidine for DNA production, or can be used to make methylfolate to drive the methionine synthase reaction.When Roaccutane raises the activity of glycine N-methyl transferase, the result is that the ratio of SAMe to SAH goes too low, and the person's methylation capacity drops. This affects a large number of reactions in the cells that require methyl groups, and in particular, it affects the methylation of DNA. Methylation in general silences the expression of genes, so if the methylation capacity drops, I think we should expect higher gene expression to occur, which could cause many changes in the biochemistry as more copies of various enzymes and other proteins would be made.In most people, when treatment with Roaccutane is stopped, the methylation apparently returns to normal. However, I suspect that in some cases, the methylation gets "stuck" in a positive feedback loop, i.e. a vicious circle mechanism, so that the expression of the glycine N-methyl transferase stays high, and the lowered methylation capacity prevents methylation and silencing of the gene expression for this enzyme.Since methylfolate has the additional property that it downregulates glycine N-methyl transferase at the biochemical level, treatment with high dose methylfolate may be able to break this vicious circle. So far, this is just a hypothesis. http://forums.phoenixrising.me/index.php?threads/progress-is-getting-there-rich-can-you-pitch-in-on-this.16078/ Methylfolate can be purchased over the counter in small doses like this, but you can also get Delpin which is 15mg of methyfolate per capsule. https://www.amazon.co.uk/Thorne-Research-5-MTHF-Supplement-Capsules/dp/B00FY8IQ7C/ref=sr_1_15_a_it?ie=UTF8&qid=1469824319&sr=8-15&keywords=methylfolate
  2. Anyone ever tried a high dose of methylfolate?! (i.e. the active form, specifically not regular 'folate' like the type found in many cheap supplements. I'm starting on 'Freddds' Active B12 protocol currently (only a week into slowly starting the sups), but I've tended to in the past have brief periods of improvements when taking thing like 'Now Choline & Inositol', but the improvements are never consistent, and it almost feels like I'm running out of something that's important for a process involved. Reading the Active B12 protocol here would seem to potentially tie in a few things, which is why I'm giving it a go. It's also yielded good results for CFS suffers whose condition appears related to ours in terms of underlying mechanisms and some side effects (methylation is without doubt affected). This got me reading some interesting stuff on PhoenixRising from the late Rich Van K, whose probably one of the cleverest and best qualified people to give their take on accutanes mechanism and side effects. Regarding asking if anyone has a tried a high dose of methylfolate, see below; http://forums.phoenixrising.me/index.php?threads/roaccutane-caused-depression-isotretinoin.12117/#post-206039
  3. That's very interesting, also it seems its the THC and CBN cannabinoids which are key, not CBD. Study below. http://www.ncbi.nlm.nih.gov/pubmed/6249575 Marihuana and its constitutents delta 9-tetrahydrocannabinol (delta 9-THC) and cannabinol (CBN) were tested for their ability to interact with the androgen receptor in rat prostate cytosol. Smoked marihuana condensate, delta 9-THC, and CBN inhibit specific binding of dihydrotestosterone (DHT) to the androgen receptor with a dissociatin constant of the inhibitors (Li) of 2.1-5.8 X 10(-7)M. in addition, other metabolites of delta 9-THC were also androgen antagonists. This data suggests that the anti-androgenic effects associated with marihuana use results, at least in part, from inhibition of androgen action at the receptor level. The symptoms are like very low DHT, but you probably don't have low DHT - my DHT levels were tested as follows; - DHT = 4.1 nmol/L (ref range 0.9 - 2.90) So DHT is actually very high, over 30% above the top end of the reference range, yet I have symptoms of very low DHT.
  4. As mentioned before, the only thing I've had a lasting benefit from was taking Gingko Biloba and Ginseng taken daily for about 2-3 months, which are both DHT inhibitors.. Other things which have helped have only seemed to help slightly, or only for a period then it stops working. The general consensus on this thread has been that DHT inhibitors are bad, based on the fact that accutane itself is a DHT inhibitor, so as a result nobody has ever really gone down this route, but it's definitely an interesting one. Regarding Cannabis/Hemp, there is one person earlier on this thread who made a full recovery from cannabis oil, and 2 others who made partial recoveries, but also people who've found it hasn't helped. On paper CBD specifically looks like it could be of benefit, but I can't say ever noticed anything at all from it and I've taken plenty of hemp based CBD oils (both sourced from the Netherlands, and loads of RSHO oil which is concentrated CBD oil from hemp, and is available legally online [it's quite expensive though, quickly gets into thousands of dollars if you're taking it for a while], as well as hemp seed extract, hemp seed oil etc). For anyone in a region where cannabis oil (i.e. RSO with THC in) can be obtained legally I'd definitely give that a go based on the single complete recovery, and partial recoveries. I'm currently looking at trying to improve methylation based on the recommendations for my specific 23andme results. This is something I've tried in the past, but I have a better knowledge of the subject now, as well as having my genetic testing results, so I think it's worth another go. http://mthfrliving.com/health-tips/supplementing-for-mthfr-b12/ I did wonder for a time if people suffering from tane sides might all have the MTHFR gene defect, but I know of at least 2 others who've had 23andme tests and don't have this defect (I have one copy for C677T and 1298C), however that doesn't necessarily mean their methylation isn't impaired. Retonic acid has been shown to decrease methylation efficiency in a number of studies. Also it ties in with people who are testing high for homocysteine (again, studies show this is raised after accutane 'treatment'). Check the above link for more info
  5. So can you explain specifically what you've done to resolve your issues so everyone can read it? A number of people (including myself) have focused on improving gut flora, but I'm not aware of anyone whose managed to fully reverse their side effects via this method. There were some encouraging signs over on SolvePFS with one guy apparently reverting his sides, but it didn't last sadly.
  6. Well there's at least 2 people who've recovered following that method, there's some more information on this thread; http://www.allthingsmale.com/community/threads/official-accutane-thread.20097/page-30 on Aug 20,2010 Goldenw wrote: This guy might be on to something. i dident post here for a loong time ... my problem was that i had ed problem caused by roacutane( age 16), and a hairloss problem that started in my early 20. knowing i am in a place with ariguably two of the worst problems a man could have, and no answer to niehter, i decided to give propecia a chance about 5 months ago - which is the main reason i dident post here , feeling bad i am taking this horrible drug but i had to give it a shot on my hair problem, knowing again that i have no sex life at all pretty much.after 3 months with it , i decided i cant give propecia a chance to clear my slight chance of ever recovering from my ed problem i stoped.. i have to say, 4 days after i stoped, i started having my spontanous erections back, morning ererctions also came back to me, wanting sex like every 24 year old should have came back also. i almost feel as normal .. thinking it just might be temporary i dident do much . but hey.. i think i am almost back as any normal guy (allthough i cant really recall how that is after 7 years feelin g nothing and having no idea i have a problem untilll runing in into this forum ) well , right now i figured ill check on into stuff aroun,, and came across this thread.. i thought of posting my last experiince though it might help others, i hope i am good as normal, not sure! if my experince could help cure you guyss, we might be on to something here.. hope again that all of you will cure from your problems.
  7. I don't think the dosage or duration really makes much of a difference to be honest, I think if you're susceptible to the epigenetic changes that the drug induces, then unfortunately you risk getting the sides from a single pill, and some people have. Same with propecia etc. It's like a switch being flicked on.
  8. 2015 Study: Natural Compounds: Role in Reversal of Epigenetic Changes http://protein.bio.msu.ru/biokhimiya/contents/v80/full/80081160.html Interesting study which is focused on an anti-cancer perspective, but seeing as we've almost certainly suffered epigenetic changes, the list half way down of "Natural compounds playing important role in reversal of epigenetic changes" is probably quite relevant! Some of the tables are below:
  9. Looks like the user only posted that single item on this thread, and he hasn't been active on the forum for almost 2 years http://www.acne.org/messageboard/profile/409641-dimmer/?tab=forums_topic_post Could try and message him I guess, if he gets an email when he receives new messages then he might see it and respond.. I seem to remember there were others who also tried this method though and didn't follow up with a recovery, but I guess people rarely post up exactly how long they followed the protocol, and with what amounts!
  10. Yeah I've tried one liver flush and got nothing from it, but I'll probably try a few more anyway, and may look into coffee enemas too. I know some people have said they've benefited, but I don't expect anything groundbreaking really!
  11. I've been suffering from the side effects from accutane for about 6 years now. Some things have resulted in some improvements however; - Tribulus - A 1gram capsule gave me really bad brain fog for about 2 days, but then I had much improved sexual sides for the following 3-4 days, but didn't last when I continued taking it. - RSO/Vaping weed - some improvement to sexual sides, but very inconsistent - possibly just due to increased levels of dopamine. - Pine pollen - improved sexual sides and mental clarity for about 3-4 weeks, until I got symptoms of high estrogen and stopped - Reservatrol - slight improvement in sexual sides, but also headaches so stopped - Zero fat diet and/or calories restriction? - Recent issue with a bilary duct obstruction meaning I felt horrendous about 1 hour after eating, especially worse with fatty foods where bile is released. Lasted almost a week, and I was eating only a little and learnt to avoid anything with fat in as this would cause a release of bile and made me feel terrible. Resulted in 3-4 days of much improved sexual sides after issues went away (intending to try a week of zero/low fat food and see if I can recreate the benefits)
  12. Yeah I think that sounds like the most plausible theory Blackfox01. This paper sums it up really http://www.protocol-online.org/forums/uploads/monthly_08_2010/msg-19273-027408800 1282061244.ipb That's not to say it won't be possible to reverse the changes though, and some people have managed to. There are about 3 studies being carried out on PFS suffers and the results are expected end of this year, early next, so that will give some answers.
  13. It's an interesting theory, and to be fair Epitalon does sound potentially quite promising (but so have so many things regards this mess!), it sounds relatively safe though, and loads of people have been trying it looking at Reddit, LongeCity etc, mainly for the anti-aging properties. I get the feeling if it had a positive effect it would probably need to be taken on a continuous basis though. Epithalon (also known as Epitalon or Epithalone) is the synthetic version of the polypeptide Epithalamin which is naturally produced in humans. This pineal peptide preparation is secreted in the epithlamium-epiphyseal region of the brain. Its more prominent tasks are: to regulate metabolism in the epiphysis, increase the sensitivity of hypothalamus to its natural hormonal influences, normalize the function of the anterior pituitary, regulate the levels of gonadotropins and melatonin in the body. Epithalamin increases a person's resistance to emotional stress and also acts as an antioxidant. Telomerase activation (consequently, elongation of Telomeres) regulates neuroendocrinous system increases the hypothalamic sensitivity to the endogenous hormonal effects decrease or suppression of proliferative changes in vaginal epithelium and endometrium in anovulatory phase normalization of gonadotropic hormones levels (FSG, LG, prolactin) positive influence on peripheral haemodynamics: improvement of blood rheology, decrease of intravessel thrombogenesis regulation of the levels of reactants in the acute inflammation phase (c3-component of the complement, pre-albumin, C-reactive protein, alpha-orosomucoids normalization of T-cell immunity normalization of aqua-electrolyte balance indices normalization of uric acid levels normalization of Cholesterol rejuvenation / strengthening of the immune system inhibition of spontaneous and induced carcinogenesis (tumor prevention) http://steroid.es/epitalon.html When I first started taking it, my sense of smell returned, my digestion improved and I slept better. I have also noted positive changes in my vision and hearing. All of these functions are related to the autonomic nervous system and the endocrine system. Epitalon has been shown to restore normal melatonin production in aging monkeys, as well as restore the normal circadian rhythm for cortisol production, both of which result in better sleep at night https://nootropix.com/epitalon-fountain-of-youth/ Going to read up some more!.. Been tried over on propeciahelp already though and benefits don't sound ground breaking, although it's only one person whose tried it and doesn't really state much detail on dosage, duration etc. http://www.propeciahelp.com/forum/viewtopic.php?f=1&t=10405
  14. Anyone ever tried the herb 'Vitex' with regards to tane sides?! A couple of people on SolvePFS have had excellent responses to this (specifically taking it alongside testosterone boosters, but also without). I've actually read this thread before, but I think I discounted it as I assumed vitex was a pharmaceutical drug (based on the name alone!), but it is a natural herb http://solvepfs.com/viewtopic.php?f=3&t=313 I've not read too much about it, but will read up. Anyone tried it?
  15. Ok that's pretty high then!
  16. He's only mentioned that recently, but one other person did go and get tested by said they had "serum zinc/copper and ceuroplasmin all normal", although they don't post figures. This Mario guy is currently taking the following sups to stop his sexual sides and brain fog etc; TUDCA, Selenium, Molybdenum and Dibencozide+FMN+Metafolin every two days. I found more genes that are associated with Selenium so its importance is much bigger than i originally thought (at least for my case). he seems to keep trying to ween himself off stuff whenever I follow his threads, but TUDCA is one he is unable to drop without sides returning, but I thought it was interesting he's been taking stuff to reduce copper.
  17. Been reading some stuff over on SolvePFS, and a guy called MarioVitali who managed to negate his PFS side-effects with some supplements (he initially thought he was 'cured', but has since found his sides return if he stops taking the sups) seems to be focusing on copper as well. http://solvepfs.com/viewtopic.php?f=11&t=930&start=570 People over there seem to be getting the best benefits from TUDCA supplementation than anything else, but interesting that molybdenum is mentioned.
  18. There are multiple people on SolvePFS who've done numerous fecal transplants. Some have noted some improvements, but unfortunately nothing ground breaking. I'm not saying it's not work trying, but I don't think that alone would 'cure' anyone.
  19. Anyone tried eating a very low fat/fat free diet for a time? I had a bit of an issue a couple of weeks back which I believe was actually a cystic duct obstruction, resulting in me getting very ill about 60 minutes after eating - especially bad when eating fat, which led me to suspect a gallbladder issue. 60 minutes or so after eating I would get a very high heart rate, feeling very faint and nauseous and I also got a feeling of panic. Generally lasted for 15 minutes or so badly and to a lesser extent for about 45 minutes. Symptoms actually match a 'gallbladder attack'. This all lasted almost a week, and by the time I'd sought medical advice I believe the issue was resolved (no cystic duct obstruction on ultrasounds, no gallstones although I do have cholesterol stones in the gallbladder). My liver enzymes and bilirubin levels were in range - the only obvious evidence of an issue was my blood was acidic (usually ph 7.45-7.55, not sure what mine was but obviously below 7 - I need to confirm exact figure) During this issue I was eating very little, and only really consuming low fat stuff - low fat plain yoghurt with kiwi or banana, jacket potato with sauerkraut, fried (fried in coconut oil) courgettes and veggie mince with tinned tomatoes - that was pretty much it. Drinking lots of mineral water and some coconut water. Once I started to feel better I juiced some veggies and had juice drinks, and slowly re-introduced more normal foods, however for 3-4 days then on my sides improved fairly considerably, especially sexual sides (much improved sensitivity). I didn't post anything on here as I decided to give it a week, but unfortunately after 3-4 days things started returning to baseline. Possible reasons for the improvement? - I did wonder if it was down to a week of effectively calorie restriction, but I've done fasts before and never got improvements like that. Then I wondered if was down to juicing a load of veg for 3 days after feeling better, including lots of radishes (good for liver and gallbladder, and apparently lower bilirubin), but I've been eating for juicing loads for a few days now with no improvement. Now I'm wondering if it was down to eating very low fat for a time, so wondering if anyone has done this? Coconut fats don't trigger a release of bile, but saturated fats do. Anyone tried very low fat for a time to see how they feel?
  20. yetanotheraccutanevictim, I forgot to request a print out of the results unfortunately, but I will do so and post up when I have them. Roland1968, if you google for chunks of that post it goes back to 2004, possibly earlier. I can't find the original source (looks like it was seemingly now defunct 'Accutane Active group'), but it's let to some interesting debate on a few threads/forums (the one below seems to include additional responses to the person who posted whats above, and some studies referenced); http://www.acnearchives.com/1940 It's also been posted a number of times on acne.org, earliest in 2005, but surprisingly never in this thread.
  21. Excellent summary there AJSP! I've had some more tests done this week, results as follows; Liver enzymes all within normal ranges (inc AST, ALT etc) Bilirubin levels normal White blood cell count normal (elevated might indicate an autoimmune issue) Liver/gallbladder ultrasounds considered normal - no gallstones, however there is some cholesterol in the gallbladder, I understand this is what may be expelled from the gallbladder when a 'flush' is performed. It's much less dense that what is considered a problematic 'hard' gallstone(s), and would be yellow-green when expelled. Apparently these develop when the bile contains too much cholesterol and not enough bile salts. May consider doing some more 'liver/gallbladder' flushes at some point (did one a couple of years back which yielded nothing). Not really convinced by them, but the fact that some people have said they swear by them, combined with the fact I now know for sure I have some cholesterol in the gallbladder makes me wonder...
  22. I supplemented with this for about 1.5 months straight in 2013 (10mg daily) and I didn't notice anything from it (brand was Doctors Best), so potentially worth trying a higher dose.
  23. I can see the root cause being something related to bile flow, as this could explain many of the issues people experience. Restricted bile flow would result in an overgrowth of bad bacteria, candida etc in the gut as the pH rises, which I think is pretty much a certainty that everyone has (my gastrointestinal tests confirmed this, and this appears to be the case with PFS suffers too). Then you're looking at issues with not being able to properly absorb fat soluble vitamins (A, D, E & K) which could impact lots of things including methylation. The candida overgrowth/parasites that have taken hold when the gut was in a bad way are releasing toxins like ammonia and this is overworking the kidneys and liver and further adding to the issues. I've cycled TUDCA a couple of times before, and I've been taking taurine daily for 6+ months, so I'll be looking to get onto the TUDCA again at some point. Also may consider taking molybdenum for a month.
  24. Jesus, just reading the full thread that I posted a link to above regarding the die-off, and turns out that guy whose experienced the horrendous die-off effects like me has previously used accutane?!!
  25. Mentioned recently about how I'd been waking up in the middle of the night, heart pounding, mind racing, feeling in a real panic, pretty much feeling like I was about to have a heart attack, and I now think this is actually down to some sort of die-off (candida, parasites etc). I've been eating sauerkraut and kefir daily for about 6-8 weeks now, taking Now Candida support, coconut oil daily. The feeling is pretty horrendous when I wake up, and basically pretty much exactly like this person describes on this thread I've just found from someone doing a parasite cleanse; http://www.curezone.org/forums/am.asp?i=1779607 If this is what's causing it then I think the die-off from the candida/parasites is releasing toxins like ammonia, and this is causing a sudden spike in norepinephrine, which would match my symptoms exactly. http://www.ehow.com/how_5245319_balance-elevated-norepinephrine-levels-naturally.html What seems to have really triggered this is when I took some liquid wormwood (only the once, but this is in addition to the stuff mentioned above). It's after that all the waking up and stuff started, but it got especially bad this week and I've been off work all week feeling horrific with really bad anxiety (which I don't usually get, but this was just horrendous), hopefully it's starting to calm down now. I've also noticed what look like parasites in the loo, including some bits that look like lettuce, fairly big, as well as smaller jelly-like bits that basically match those like you'd see if you googled for it. Still feeling pretty terrible, but I've found molybdenum seemed to help a bit (this apparently absorbs toxins, and interestingly also copper..) http://blog.probacto.com/everything-you-need-to-know-about-herxheimer-candida-die-off/ I've also got some Yucca root, but have yet to try this - apparently this absorbs ammonia.