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  1. It'll be a series of fecal transplants from a healthy 'doner', not just one. Some of the PFS lot have tried this and apparently got some improvements from doing them. It's possible to get a gastrointestinal test done to see what species of good bacteria you have (I've done this myself), and pretty much everyone whose been tested (15-20 people that I've seen results for) is lacking in the 'beneficial e.coli' strain. I tried taking the probiotic 'mutaflor' to try and replenish this, although it seemed to just make me constipated, so didn't get too far with that. May try again as I've still got loads in the fridge. There are likely other strains lacking too - the test only looks at the main known strains. Milk kefir is pretty easy to make and I drank that daily for months. Water kefir isn't worth bothering with IMO - tried that for a time also. Sauerkraut is also pretty easy to make and again I ate that daily for some months, and have also tried drinking kombucha on a regular basis. Gut health is clearly a factor in our issues, but it's difficult to know if that is the root cause, or if it's due to hormonal imbalance or methylation issues. They're all interlinked and they're all out of balance. Definitely worth trying to ensure your gut health is good though, try and avoid processed foods, fizzy drinks, too much alcohol etc. I've just recently gone gluten free as my 23andme test says I'm 'likely intolerant'. Supermarkets are starting to offer more and more 'free from' ranges which helps
  2. @Kynarr I'd get homocysteine tested too Expect most if not all of those will come back in range though, which is half the issue here. Expect FSH, LH, free and total T to be on the low-side, cortisol to be high. Keep us posted when you get the results though!
  3. Yeah I tend to agree on the AR theory, and I'm also one of those with high DHT (I'm 40% above the top of the normal range [DHT = 4.1 nmol/L (range 0.9 - 2.90)]), however both free and total testosterone are fairly low, but within range. I think this just adds weight to the theory, and it's interesting that someone recently posted up about 2 subsets of PFS; PFS type 1: 5AR/DHT levels are impaired but androgen receptors are still somewhat functional. (They are still abnormal though) People with PFS type 1 respond best to things like creatine, sorghum, weightlifting, etc. Basically anything that boosts 5AR/DHT.PFS type 2: 5AR/DHT levels are too high relative to the sensitivity levels of the androgen receptors. People with PFS type 2 respond best to things that lower 5AR/DHT levels, such as zinc, marijuana or even things like saw palmetto and microdoses of propecia. (wouldnt recommend the last one though) http://www.allthingsmale.com/community/threads/a-new-protocol-i-have-been-experimenting-with-it-can-be-used-for-both-accutane-and-pfs-sufferers.27030/ Oily skin is generally associated with high DHT and my face is always very oily, whereas when taking tane it was totally dry. Obviously some people are left with persistently dry skin. This also ties in with the Dr Prezzi (sp?) method - he cured his accutane sides by taking a small amount of finasteride over a course of some months, so presumably he was left with persistently high DHT post-tane. The fact there are likely 2 types of PFS just confuses the whole thing even more as people tend to all follow the same protocols.
  4. Just saw this over on the ATM forum, some guy doing pretty well taking zinc supplements, and putting forward a very interesting theory which I can relate to regards taking certain sups which result in no morning glory for a while, then you stop and it slowly comes back after a time. Also very interesting to read the theory of the type 1 and type 2 PFS. Personally based on these categorisations I would be a type 2, as sorghum for example seems to have no real impact, but I get benefits from weed (would rather not touch the stuff, but have tried it and it does result in improvements for a period), and zinc (I eat pumpkin seeds every day and have for a couple of years as I notice if I don't - great source of zinc). My bloods also show my DHT is high (DHT = 4.1 nmol/L (range 0.9 - 2.90) http://www.allthingsmale.com/community/threads/a-new-protocol-i-have-been-experimenting-with-it-can-be-used-for-both-accutane-and-pfs-sufferers.27030/
  5. Well Calcium D Glucarate is an aromatase inhibitor so it'll be lowering your estradiol levels (like Arimidex would, which I posted about on the previous page). http://www.peaktestosterone.com/Natural_Estrogen_Blockers.aspx I've taken this a couple of times, but only for a month or so. Recently took a higher dose (1.5g per day - 6 x Source Naturals capsules). What brand have you been using? It's interesting that that was mentioned in that '8 tips for recovering from accutnae sides' video on youtube too. Got nothing from iodine, and that's been discussed many times on this thread, however if you feel it may be helping I'd stick with it.
  6. If blood tests could identify the issues we're suffering from, we'd have been out of this mess long ago. At best they give an indication of issues (testosterone is usually low-isa, but in range, mine is - free and total). I'm not necessarily saying to follow this method, I'm just pointing out that there are multiple recoveries following a similar protocols (raising testosterone, and taking an aromatase inhibitor to stop testosterone being converted into oestrogen)- the one using Arimidex is worth noting due to the very fast recovery time. The others have been more like months/years.
  7. Looks like yet another guy suffering from AR5 inhibitor side effects is almost recovered now over on the Swole Source forum. I've been following the forum for a couple of years, and a number of guys have recovered following pretty much the same method which is; Cycling testosterone boosting herbs like tribulus, maca etc (cycling so you don't build up tolerance Clean diet and exercise Taking an aromatase inhibitor (I think this is key) This guys recovered his finasteride side effects (all the usual - brain fog, sexual dysfunction, dry skin etc) using a low dose (0.5mg/day) of the aromatase inhibitor Anastrozole (Arimidex), and within weeks his brain fog had cleared and all sides were reduced. Over only something like 6 weeks he's also recovered from his sexual sides, got oily skin back, and went on to make complete recovery http://www.swolesource.com/forum/general-discussion/2529-shbg-questions.html His recovery is one of the quickest I've seen, and probably down to using Anastrozole (Arimidex). This guy has now pretty much fully recovered from Saw Palmetto sides (again its the usual AR5 inhibitor sides you get from finasteride, accutane, propecia, saw palmetto etc). He has used a DHT pro hormone (for body builders) which boosts DHT and is also a powerful aromatase inhibitor) http://www.swolesource.com/forum/post-finasteride-syndrome/2996-my-journey-promised-land-19.html I'm pretty tempted to try a low dose of Anastrozole (Arimidex), but it's just getting hold of it. I've tried many testosterone boosting herbs and have had decent benefits, but only up to a point. Tribulus resulted in an almost complete recovery mentally and sexually for me, but only for a couple of days, and I couldn't repeat it. Pine pollen powder made me feel great for 4-5 weeks, much better sexual and mental sides, felt really confident and alpha-male like, but started to get high estrogen sides (very sensitive nipples etc), so stopped - clearly the testosterone was being aromatased into estrogen. I've also tried Erase Plus (a natural aromatase inhibitor) and this also worked quite well, but no lasting benefit after stopping. Anyone happen to have tried Anastrozole (Arimidex)?! I'm pretty impressed at just how quick this guy recovered on a low dose.
  8. The dosage is almost certainly irrelevant - some people have got persistent sides from taking a single pill - the same as with finasteride, saw palmto etc. I only took 10mg/day for 30 days but still have persistent sides 6+ years later. If you only stopped one month ago just make sure you're eating a really clean diet, no alcohol etc and give your body its best shot at recovering.
  9. All those symptoms will absolutely 100% be down to Accutane. If I were you I'd be eating a really clean diet with plenty of (ideally organic) vegetables, meats and completely avoid processed foods and fizzy drinks etc, maybe go paleo if you can. Some people have had symptoms for some months after stopping the drug, then recovered.
  10. Have you tried Noopept? One of the guys who recovered his sexual side using RSO earlier on this thread found he could function normally mentally when taking noopept and astaxanthin. I've tried the latter, but didn't notice much on it's own. For mental clarity methyl B12 and l-carnitine fumarate definitely help me without a doubt. l-carnitine fumarate probably has more effect than the B12.
  11. I've just started taking liquid vitamin A (not retinol, but Retinyl Palmitate). This is really to see if I get any improvement in night vision. Also that '8 tips to repairing accutane' does mention the use of liquid vitamin A, which is obviously much easier to be absorbed by the body, as in our cases there are potentially issues with fab soluble vitamins. It's also possible to get liquid vitamin D3 which I may consider trying in future.
  12. http://geneticgenie.org Some decent links on there too! I was supplementing with methylB12 for some time, along with some methylfolate, but it seemed cause my blood pressure to rise after 3-4 weeks of 2mg methyl B12 and the odd bit of folate, but felt pretty good up to that point (better mental clarity, increased confidence etc). I've not really followed any protocols to follow that specific mutation, the B12/folate is for the MTHFR mutation.
  13. I'm also hetrozygogous for a1298c (along with all the MTHFR genes). THere's quite a few places you can run the data through for free to get some more info, I think Genetic Gene is best. MTHFR A1298C MTHFR A1298C is involved in converting 5-methylfolate (5MTHF) to tetrahydrofolate (THF). Unlike MTHFR C677T, the A1298C mutation does not lead to elevated homocysteine levels. This reaction helps generate BH4. BH4 is important for the detoxification of ammonia. The gene is compromised about 70% in MTHFR A1298C (+/+) individuals, and about 30% in people with a heterozygous (+/-) mutation. BH4 acts as a rate limiting factor for the production of neurotransmitters and catecholamines including serotonin, melatonin, dopamine, norepinephrine, and epinephrine. A MTHFR A1298C + status may cause a decrease in any of these neurotransmitters or catecholamines. BH4 is also a cofactor in the production of nitric oxide. A dysfunctional BH4 enzyme may lead to mental/emotional and/or physical symptoms. Mercury, lead, and aluminum may act as a drain on BH4.
  14. Just seen this posted on the ATM forum, results from Havard Finasteride side effects study (in summary, it's pretty inconclusive) http://press.endocrine.org/doi/pdf/10.1210/jc.2016-2726
  15. Interesting link! The finasteride 'cdnuts' method for sorting fin sides is essentially some water fasts, followed by cycling testosterone boosting herbs and a pro-hormone along with an aromatase inhibitor (believe he used Res100). Others have recovered following this method, a couple quite recently over on the Swole Source forum. In the past I've tried testosterone boosting herbs like tribulus, but have only received short term benefits. I also got a great few weeks when taking 3 x heaped teaspoons of pine pollen daily to increase T, but after 4 or so weeks I was starting to get symptoms of high e (really sensitive nipples), and in addition was getting groin pain. Have also tried taking aromatase inhibitors - Erase Plus resulted in rock solid morning glory, but the benefits seemed to plateau after a while. Also some good results from grape seed extract, but this seemed to also give me headaches. Calcium d glucarate is supposed to be an AI but on 3g of that daily I felt like it was resulting in a swollen prostate. One thing I've not tried is testosterone boosting sups like pine pollen along with an AI, that would potentially give some good results. I'm currently having some moderate success improving mental clarity with methy B12 + acetyl l-caritine and some folate, so will likely continue that (also take 2mg vitamin C daily, and d3 10ui every 2 days), but I'm going to get some DIM ordered and build up on that too.
  16. Was just having another watch of that '8 tips to curing accutane sides' video, and one thing I've not tried is liquid vitamin A. Anyone given this a go in liquid form? I seem to do ok taking cod liver oil, but it doesn't restore my night vision (I've still got zero night vision 6 years post tane). Apparently vitamin A improves the absorption of B12 and I'm currently taking MB12 2mg daily, so thought I'd order some liquid A.
  17. B12 levels often test fine on a blood test, but people will CFS seem to have a deficiency in cerebrospinal fluid levels, and do much better when they're taking high doses of ACTIVE B12, not the forms you get in cheap multivits. Posted up before a few times, but people with similar conditions to ours (CFS namely) generally see improvements when they follow methylation protocols. This [acne.org] thread has many people posting up all sorts of theories, but few actually get any real benefits from them. CFS forums have hundreds if not thousands following the similar protocols regards to methylation, with the majority getting at least some benefit (based on user polls I've seen on phoenix rising) Try and read this whole thread, it contains many useful links too http://howirecovered.com/active-b12-therapy-faq/ Regards methylfolate, I've started taking 1000mg/day now as I've been doing fine on 2000mg/day of methylB12 for a while, with improved mental clarity. From the link above, this is an extract regards gut issues;
  18. I don't really buy the theory that 'accutane is still in the body'. I hardly took any, and some have taken just a single capsule and ended up with persistent sides. Is there supposed to be an unlimited store in the liver that just travels around the body, getting involved with many biochemical processes, but somehow not changing it's structure at all, and just going round and round? Even if some was stored in fat cells, it would only recirculate when you lost weight and those cells broken down for energy. It's just not feasible that sides many years later are due to accutane in the body. IMO the root cause is impaired methylation, and everything is a consequence of this, and a down-stream effect. I've tried tackling gut issues by getting gastrointestinal tests done (confirming a lack of certain specifies of good bacteria), and have taken probiotics for months to try and replenish the lacking species - eaten sauerkraut and kefir milk for months, while minimising sugar, got hold of a lot of 'Mutaflor' probiotic to try and replenish my 'good e.coli' species, along with many other probiotics such as 'prescript assist' etc but none of this really helped, because the issue is up-stream, however clearly poor gut health is not helping matters (in terms of absorbing nutrients), so it will always be important to try and promote good gut health. Same goes for the liver, clearly there are issues there, but again due to methylation resulting in impaired function, however this is also a reason to try not to overburden it. http://howirecovered.com/connections-between-methylation-toxicity-and-liver-function/ That's why I think the best route to trying to overcome sides is getting methylation working again properly. This isn't an easy one-size fits all approach, it's trial and error involving various supplements in differing amounts. Elevated homocysteine seems to be a real indictor of impaired methylation, anyone actually got test results for this?
  19. Interesting to read that. Back in June I had a few days of massively improved side effects (sexual sides were 80% back to normal), which was after I'd been [very] ill with a binary duct obstruction. I was basically feeling horrendous about 45-60 minutes after eating a meal with fat in. Racing heart, feeling really faint and shaky, like I was being poisoned - also very bad anxiety. As soon as I realised it was being triggered by eating fat, i stopped eating fat and just ate jacket potato, sauerkraut, quorn mince (a meat-free mince), yoghurt (1% fat) with prunes. This went on for about a week or so, and in the end I got an ultrasound and x-ray which were both clear, but my blood was acidic so clearly something had been very wrong. Obviously caught just the end of it, and it hasn't re-occured. The sides returned after I started eating fat again, but I bought a load of coconut oil soon after as that doesn't trigger a release of bile, and planned to do 10 days or so virtually fat free, but haven't done so yet. Has anyone tried fat-free/almost fat free diets for a time?!
  20. I would say it's definitely worth getting homocysteine checked yeah, and if you do please post the result up. I'm planning on getting this done myself at some point, and would be surprised if it's not high. As I carry the MTHFR gene defect though (confirmed through 23andme), I'm recommended to take basically the same sups for that anyway. There are loads of tests showing elevated homocysteine after accutane/isotreitinoin 'treatment'; Hcy levels are elevated in patients on Iso treatment for CA. It may be due to either the inhibition of cystathionine-beta-synthase, an enzyme required in the metabolism of Hcy, by the drug and/or the liver dysfunction. Daily supplementation with vitamin B12 and folate, which are the cofactors of the enzymatic reactions involved in Hcy metabolism, can lower plasma levels of Hcy http://www.ncbi.nlm.nih.gov/pubmed/18608712 The benefit of methylcobalamin administration on lowering plasma tHcy levels in HD patients was remarkable. Our study suggested that both supplementations of high-dose folic acid and methylcobalamin are required for the remethylation pathway to regain its normal activity. http://www.ncbi.nlm.nih.gov/pubmed/11981084 This has been mentioned before on this thread, and also I've seen it mentioned on other forums too, but there seems to be a real lack of understanding between the active forms of the vitamin, and other forms which only became active after an enzymatic reaction in the body (and this ability is almost certainly impaired). There is also the issue that methylfolate is fairly expensive to supplement in high doses.
  21. There are some people who've recovered using RSO, but also a number who've tried and seen no benefits (including myself). Other than being very hard to obtain, I really had trouble functioning at work the day after taking it before bed, and there is no way I could get anywhere near the recommended dose - I was absolutely fcuked on much smaller amounts. Probably only managed to consume 5-10g over 6 months. The one benefit I got was improved orgasm, that was only when it was in my system though, presumably due to increased dopamine. Also took loads of CBD oils, including RSHO at 1g per day for a month, and smaller amounts for longer. Got absolutely nothing from that stuff, so wouldn't recommend wasting loads of money on it. Currently I've been following methylation protocols for the past couple of months. There is absolutely no doubt that accutane messes up biological processes involved with methylation, and just look at all the studies showing post 'treatment' you have low folate, excessive homocysteine etc. This thread details some of the protocols, and is well worth following. I've tried to follow 'Freddds' protocol, but really struggle with ADB12 (one of the active forms of vitamin B12 that doesn't require enzymatic conversation to be used) - this stuff makes me extremely fatigued. Have got some improvements with 2mg MB12 (the other active form of B12) and 1 x L-Carnitine Fumarate - much better mental clarity. I'm going to introduce methylfolate at some point as clearly that's pretty key. Everyone should read this thread http://howirecovered.com/active-b12-therapy-faq/ Rich Van K over on the CFS forum phoenix rising may well have been along the right lines with his theory of tane sides, but I can't find that anyone has actually tried his suggest of a high does of mehtylafolate (would probably require taking deplin (15mg) and a few mg of MB12. This is his hypothesis; 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. You mentioned that you have responded well to supplementing SAMe. I think that suggests that you do have a methylation deficit, and perhaps it started with the Roaccutane treatment. However, I understand that you did not respond well to methylfolate treatment or B12 treatment or the combination, and I don't know what to make of that. It could be that they actually were working to restore your methylation function, and that can cause symptoms. The cold sores suggest that your immune system was becoming more active, and this is an expected effect of restoring methylation, folates and glutathione. Perhaps it would help to start with lower dosages of B12 and methylfolate. If it is feasible for you to do some lab testing, the combination of a Health Diagnostics methylation pathways panel and a 40 plasma amino acids test or a urine amino acids test would help to determine what's going on with your methylation cycle, folate metabolism, glutathione level and the amino acids associated with all of the above. The fact that you benefited from zinc and B6 suggests that you might have HPU (also called KPU), though you might just have been low in these essential nutrients. Again, if testing is feasible, you might consider the Metametrix ION profile, which I believe is available in Australia, and which will give information about other possible deficiencies. There is a fatty acids panel included in this profile as well, and that may help in sorting out your response to fish oils and evening primrose oil. It will also give information about potassium and magnesium. As you may know, the cells tend to be low in both in ME/CFS. Both glutathione and B6 seem to be involved in maintaining the intracellular magnesium levels, and the potassium level requires ATP, which is low in ME/CFS because of the mito dysfunction. Manganese is also on the ION profile. Sounds as though you have fructose malabsorption. MSG is a big source of glutamate, and the fact that you are sensitive to it could mean low B6 (or B2) or a state of excitotoxicity because of glutathione depletion. The testing I mentioned would help to sort this out. I don't know if your other food sensitivities are allergies (type 1 sensitivity, involving IgE and histamine) or IgG food sensitivities due to a leaky gut. Do you have symptoms associated with the gut? I don't know what is causing the muscle tension. It could be mito dysfunction, causing low ATP production. ATP is actually used to release contraction of the muscle fibers, and to "cock" them for the next contraction. This could also explain the problems with strength and endurance. If the above testing is done, it would be possible to see what is going on with the mitochondria. The collapsed vertebra in your neck could also be affecting the nervous system and causing some of the symptoms you described. I guess that's about all I have to offer, based on the available information. If it is feasible to run the tests I mentioned, I think you could know a lot more about your condition and some clues as to how to deal with it better. Best regards, Rich http://forums.phoenixrising.me/index.php?threads/progress-is-getting-there-rich-can-you-pitch-in-on-this.16078/ One of the sides of tane is also significantly raised homocysteine, and this along could account for many side effects. To lower this you can take active B12 (MB12), methylfolate and TMG Case study: lowering homocysteine 'saved my life' Chris K felt very unwell, with constant tiredness, worsening memory and concentration and little zest for life. He was depressed, had no sex drive and felt brain dead. His homocysteine score was 119. He changed his diet and took homocysteine-lowering nutrients and, within three months, his homocysteine level dropped to 19. After 6 months it had dropped to 11. He cannot believe how well he now feels. His memory and concentration are completely restored. He has boundless energy from 6am until 10pm He now exercises for an hour every day and has lost weight. "You have saved my life, or at least made it worth living again. I’m a new man and my love life has perked up," says Chris, who followed the supplement and dietary guidelines in The H Factor. Nutrients and levels to supplement, depending on your homocysteine score https://www.patrickholford.com/advice/how-to-lower-your-homocysteine-level Methylation has been discussed many times on here, but never with the right supplements (I've tried before , and looking back was wasting my time). A significant number of people on the CFS board have had decent improvements, so its worth trying.