tanedout

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  1. Just been tested for crohns actually - should know in a week or so, but I think quite a lot of people have been positive for this so it wouldn't come as a surprise. My bloods have always shown quite high cortisol (always in range, but right at the top). Recently I think it's gone even higher, and I'm getting it tested first thing Monday. This goes hand in hand with increased abdominal pains/gut inflation/crohns or whatever it is, but this is likely increasing cortisol significantly, and it's giving me issues like righthand side chest pains, general stress feeling. The below probably explains why I've been feeling better applying progesterone cream, as mentioned recently; https://www.drlam.com/blog/progesterone-cream-and-adrenal-fatigue/961/
  2. If you've gone that far without those issues appearing, then you're probably ok. I've read of some people who've had issues like ED appear while on, or just after finishing the drug, and then the issues have gone away for a bit and then come back months later, but I'm not aware of anyone who has had issues appear first time months after taking it. I think you'll be fine, but I'd still be eating a healthy diet etc if I were you.
  3. Try MSM for joint pain. I've found ashwaganda helps a bit stress too, and it's supposed to help balance hormones. My sides effects have changed over time, 7 years post tane, but obviously have never gone away - the last 6 months have had terrible sleep and digestive issues for example, whereas previously I didn't get these issues. Main things like ED, loss of libido, complete loss of night vision, brain fog haven't changed substantially. I did used to get head pressure like a lot of people talk about however, and that went, but I don't know in response to what. Good luck with the RSO! Check out accutaneispoison and taneabomination's recovery stories on this thread if you haven't already. Took both of them some time to feel the full benefits. I think AIP first noticed his night vision was coming back. Yeah they'll know exactly what the score is with the side effects from their poison, but it's all about the money for them. Just deny responsibility, cover-up, rinse and repeat. No concern for helping those whose lives they've ruined.
  4. The Dr Pezzi 'cure' using Finasteride was discussed again recently, and one of the members of this forum got in touch with the guy. He actually said he would read some of this thread and respond. Sounds like although he did recover his sexual sides using Fnasteride, he went on to get additional sides that he believes were from that. Actually who was it who get a response from Dr Pezzi? Assuming you never heard back from him? Edit: Here we are, it was Feb this year, page 461 http://www.acne.org/messageboard/topic/295030-repairing-the-long-term-damage-from-accutane/?page=461 @Walden Rev - Did you ever hear anything more back from Dr Pezzi?
  5. I totally agree! Everyone is affected in a slightly different way, and what I'm getting at is there isn't a 'one size fits' all 'cure' as often seems to be alluded to on this thread. It's likely going to involve a combination of things based on the individual. There are a few recoveries on this thread using RSO (Rick Simpson oil), one full recovery, another pretty much full recovery and the 3rd recovered his sexual sides but still has brain fog. Numerous others have tried this, including myself, with no success however. There's also various recoveries on PFS forums with the CDnuts method (cycling testosterone boosting herbs, prohormone cycles all proceeded with some fasting), some have recovered with tribulus alone, some with progesterone cream, some natural recoveries and some via strict diet. I'm not trying to come across pessimistic, but with this being one long thread it tends to go around in circles as obviously new members are unlikely to read all the old posts in full. Although its not possible to search this thread on acne.org, you can just use google to search it, e.g.; Enter the search phrase in google to search the thread for PFS being mentioned; "Repairing the long-term damage from Accutane" PFS
  6. That I'm aware of only a couple have tried the immunosuppressive drugs short term, but sounds like it results in 100% reduction in symptoms (at least as regards to using Prednisone). Regards Propeciabelp, there are other drugs which are also 5-alpha reductase inhibitors like Accutane, including Propecia, Finasteride etc, as well as the herbs Saw Palmetto and Fenugreek. All have broadly the same potential sides with loss of libido, ED, brain fog, dry skin etc. Propeciabelp is a pretty negative forum - you're better off looking at solvepfs, swole source, raypeat or the allthingsmale finasteride/accutane section (although it's pretty dead now). Unfortunately none have the answers.
  7. That's interesting, I didn't know anyone else had tried Mutaflor. I tried that in response to my gastrointestinal tests showing no growth of beneficial e-coli, but got no benefit. I've tried all sorts on the gut healthy approach before over the years. Specific probiotics like Mutaflor, Prescript Assist, VSL3, etc etc - milk, water and coconut kefir for months, sauerkraut, kombucha, along with pre-biotics like green banana flower and l-glutamine. Wheat free, dairy free, gluten free etc etc. Also done extensive periods taking various things like 'now candida cleanse', blackwalnut hulls, etc. The only benefit I really noticed was milk kefir definitely helped with mental clarify, maybe down to folate and b-vitamins. I've continued with eating sauerkraut, but I don't think any sort of gut protocol is going to resolve this issue - same with PFS guys, clearly gut health is affected, but it's not the root cause. It's been covered many times on this thread. I think it's still important to eat healthy, take probiotics etc, as part of a wider protocol though.
  8. Well sounds like you're on the right track (no pun intended!). If I were you I'd keep that up and not be focusing on this thread and keep a positive mindset. Nobody has the answers or this thread wouldn't be 13,000 posts long.
  9. September 2016, how is this shit still being prescribed?! Absolutely makes my blood boil. @Sprinterguy98 - I'd get eating a very clean diet, no processed foods and refined sugar, cut out alcohol, exercise and do HIIT training at the gym if you can. @guitarman01 - you seem to be able to get all sorts of tests done which is great, but I really think many of things are just downstream issues as a result of depleted neurosteriods post accutane. Are you able to get you cerebrospinal fluids tested? In the recent Italian PFS* study this showed depleted levels of neurosteriods in the CSF fluid of the PFS guys, but blood tests looked fine. The issue is more neurological than endocrine it seems. Getting similar testing done would be a big step forward for accutane victims, and I believe this would show similar results and would finally give us something concrete to go on; http://www.pfsfoundation.org/news/peripheral-nervous-system-involved-pfs-patients-severe-ed-new-study-demonstrates/ Do you have scope to get such tests performed? Anyone else have the ability to get extensive testing done seemingly at will, like GM? * For any newbies PFS is Post Finasteride Syndrome, guys who have got the same sides as us from taking that 5 alpha reductase inhibitor (anxiety, depression, ED, loss of libido, persistent dry skin, brain fog etc) so this is relevant to us.
  10. High liver enzymes can indicate liver damage, fatty liver, cirrhosis so it's probably worth following this up, but usually these figures can be reversed by supplementing with things like TUDCA which is supposed to be very effective at lowering liver enzymes, and that appears to be one of the main factors in Mario's recovery. Did you get bilirubin tested as well? This is usually done alongside ALT and AST. Recent studies have shown that a molecule in licorice root called 'glycyrrhizin' has show to be extremely effective against liver damage, so this might be worth bearing in mind (especially since a PFS guy who recently recovered fully was cycling this); http://www.naturalnews.com/052877_glycyrrhizin_licorice_root_extract_liver_protection.html As it happens I've recently had a load of tests done on my liver and my figures surprisingly all came back in range (as they have done previously). I also had an ultrasound on the upper right quadrant (3rd one I've had over the years in response to pains in that area), and again this showed up nothing. I'm scheduled to see a hepetology specialist soon however. On another note, who else has an elevated heart rate/strongly beating heart? I've had this as a side effect (resting heart rate consistently very high, and I can always feel my heartbeat in my head when resting on my pillow), but after supplementing with progesterone cream my heart rate seems to calm down completely? I've tried this twice just to make sure it wasn't co-incidence. Not really sure what this might indicate, but thought it was worth mentioning!
  11. Another PFS recovery, always encouraging to read! http://www.swolesource.com/forum/post-finasteride-syndrome/3334-long-time-lurker-finally-got-my-health-back-doing-cdnuts-boost-your-low-t-protocol.html He doesn't mention it, but licorice is a DHT inhibitor, and I think the way he's cycling it (let DHT rebound after after being inhibited) is potentially what's sorted him out here..
  12. Yup, I'm in the same boat, 7+ years now in this mess. Have you tried testosterone boosting herb cycling, and cycles of pro-hormones (R-Andro, or AndroHard)? Some of the PFS guys are seeing some pretty good improvements following this method. I'm planning to give it a go. I've tried herb cycling before and got some benefits, but the benefits either faded with continued use, or I got high e sides. I've not tried pro-hormones before, but these are also anti-e, so I'll see how it goes. The PFS guys find after each cycle the benefits fade a little, but to a higher base-line, so slowly get better and better.
  13. This isn't good to hear, so your recovery was only temporary and now you're experiencing symptoms once again?
  14. Thanks, that's interesting to know. My liver enzymes always come back in range (all my bloods ever taken have come back in range). Just today I saw the doctor again to discuss recent bloods, ultrasound on gallbladder and liver and ECG, and I'm being referred to a specialist regards the liver so a fibroscan might well be on the cards. Interestingly the ECG's showed abnormal s-waves regards to heartbeat. My pulse has been elevated post-tane and I have a much deeper heartbeat - can always feel my heart beat in my head lying on my pillow. One thing that seemed to help a bit with that is progesterone cream, and I plan to experiment some more soon, but hope to try some androsterone soon, so progesterone can wait.
  15. Some of the PFS guys over on swolesource are seeing some great results from taking a pro hormone called R-Andro (basically synthetic androsterone) and a fairly high dose of niacinamide (B3), and potentially caffeine. http://www.swolesource.com/forum/post-finasteride-syndrome/3303-iml-r-andro-first-taste.html http://www.swolesource.com/forum/post-finasteride-syndrome/3321-asking-how-r-andro-works-pfs.html I had some really good results from 3 x heaped teaspoons of pine pollen each day for about 4-5 weeks (this contains androsterone, same as R-Andro, but much less), however it just ramps up my estogen and I get really sore nips etc, so always have to stop, but R-Andro is supposed to be anti-estrogen too, so shouldn't be an issue. I've got R-Andro on order, so I'll report back if I get any improvements from it. I can only find it from US based suppliers though so I'm having to get some shipped over, but anyone US based who wants to try it should have no issues getting it. For mental sides (i.e. brain fog) it sounds like people are getting really good results from this combo: 500 mg niacinamide, 325 mg aspirin, 200mg caffeine
  16. Not sure if this has already been posted, but I don't remember seeing it; http://www.pfsfoundation.org/news/peripheral-nervous-system-involved-pfs-patients-severe-ed-new-study-demonstrates/
  17. You're doing well getting a ton of testing done, nice work! I had another ultrasound last week on liver/gallbladder, but this showed no evidence of anything wrong. Another load of bloods as well, including bilirubin, AST, ALT - all within range, as per usual. In fact I've never had any bloods come back out of range, ever, although free T is always on the low side, and cortisol tends to be on the high side (DHT also borderline high). At the moment just focusing on liver detox pathways via supplementation, based on my 23andme results, nice clear article here which is worth reading. Also hanging on for any further updates from Mario's research, obviously along the same lines, but good for suggesting areas to focus on. https://www.modernherbalmedicine.com/articles/the-low-down-on-liver-detoxification-2.html?page=3 BTW, has anyone ever used 'Progesterone cream'?! I've read some PFS guys have recovered from using this, and in my case I have quite high DHT and cortisol, and this should in theory lower both. I've read people improving ED and libido and mental clarity with it's use. Can't find any 'tane suffers saying they've tried it before? I have the MAO-A (rs6323) mutation. homozygous so high risk, and 'Nutrahacker' suggests Progesterone for this defect. Anyone?
  18. What protocol did she follow Mario? Is there a thread on PR where she has posted the details of what she did to recover? Great to hear she is 90% better!
  19. 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/
  20. @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?
  21. 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.
  22. 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.
  23. 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.
  24. @mariovitali Thanks for sharing and putting in the time and effort to compile this info, I'll have a good read through tonight!
  25. 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.