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Mate, I'd be cautious about taking so many supplements. I took heaps of supplements in the early 2000's and I'm pretty sure it just made my body more of a toxic waste dump. This was about 6 years after stopping the poison. I've been off it for 19 years now and still have many problems, but not quite as many as I did a decade ago. Each year I feel about 2% better than the previous year, so progress is ridiculously slow.
I don't think that Roche will help any victims of this poison. You have a better chance or suing your derm for not warning you of some of the side effects. In my case, I didn't have any acne whatsoever, just a little oily skin, yet was left of on the poison for 2 years, so my derm at the time who has the initials BB is definitely at fault. Getting money from her wouldn't help me with anything though because there seems to be no cure. If only I could hop on a time machine and go back to 1994 so I could avoid taking that poison. That would be way better than being awarded a billion dollars right now. There is just no price you can put on your health. Without health, there is no happiness.
Some supplements do work. Amino acids and antioxidants. I've actually been beating pancreatitis with a combination of Alpha Lipoic Acid, Cysteine, Grape Seed extract supplements. All of these are known to help an ailing pancreas for one reason or another (probably the high antioxidant properties). In any case, I can confirm these have worked on my internal pancreas cells and have curbed any inflammation that arise from a weekend of binge drinking.
Now, why do I have pancreatitis? It's a combination of about 4 - 5 years of alcohol binge drinking (weekends) and the fact that our cells (internal and external) don't regenerate as fast since Accutane.
Now, why do I drink alcohol? It's probably the only substance that gives me a euphoric feeling post tane, that I sometimes forget about my side effects and feel relatively "normal". Movies are better, food tastes better, etc.
Anyways, you guys know all this, to the point at hand...my latest trials:
Trialed with Progesterone 10mg daily for a week. No effect on mood whatsoever, however I've noticed a bit more erections. Say if I get 1 - 2 a day, taking this will give me 3 - 4.
Trialed Tianeptine for a week. No effect on mood whatsoever, however I've noticed very little anxiety when going out in public, and slightly increased appetite.
I don't know if supplements work. I took hundreds of supplements, of high quality brands. None of them worked. Some of them i feel they did more bad than good.
I remember i took few months ago some corticosteroids and my skin got instantly so moist... but it didn't feel right, my skin was itchy because of the sebum and my hair loss got worse.
It's weird...i thought a higher quantity of sebum will help me, but didnt. And about that, when i have temporary recoveries from accutane, my skin gets moist for a day or two...but that sebum feels different, feels like pre accutane. The moist vitamin A and corticosteroids give me, it's different and causes itchness. The itchness reduces when i wash my skin and scalp and they skin gets dry.
I have to say that, after accutane, i feel dumber. I have a bit of difficulties in thinking, speaking...it's so weird. When i drink alcohol, i'm speaking so quick and well, like pre accutane.
The drug did so much damage to us... I want my life back, even with the cost of having my acne back.
I had really ugly acne, but i was way happiner than now....this drug ruined my mental health completely.
Accutainted4ever : If you start TRT, i believe you'll do a mistake. You'll have to inject T every week, your testicles will start shriking, your DHT will rise and it may cause you hair loss. Your estrogen will rise. Your HPT axis will be supressed. Your acne may come back, because your skin will get oily. T injections are even hard on the liver. Keep in mind that i did that for a while, and it caused me more bad than good. It felt bad for my liver and kidney and left me with a worse E.D. TRT may even get you infertile !
Do not play with hormones, in our case (accutane sufferers), the TRT will only have temporary benefits. While doing TRT, my errection got better, but not even close to pre accutane, and the effects were only temporary.
Finally, it's your decision, but be careful. It's not like taking some supplements, this stuff is dangerous.
If you wanna try with vitamin A for a while, since you say it doesnt have bad reactions on you, take low doses for few weeks and see what happens....but just few thousands i.u. , so that it wont harm you or anything.
And about TRT, do your research, dont jump so fast on it, it could damage you permanently.
I think Robert is rigt, I don't think that TRT is the answer in our case. I also think about taking steroids for faster regeneration, more strengh etc, but in our case it can really make more harm than good. About mental health, I was just a little bit nervous before Accutane and really intellligent had great memory, after tane I started having problems with simple math. I barely slipped through high school being unable to concentrate or learn anything. And yes I feel like an idiot after Accutane, I also have speech problems, use to talk a lot and freely, recite poetry, had great imagination but now its all gone, along with my personality. What a nightmare
I came across something, a treatment which involves simple things like water, teas, food regime. It take from 1 month to 6 months, it depends. I know people being cured of cancer and bad diseases by doing this.
I want at least few of you to get involved in a trial, to see if there will be any positive results.
The ones who wanna participate in this trial have to be serios and do things by the book. And have some free time, everyday.
You'll just have to buy some plants for making some mixing of teas... and eat health food. And pray.
I will soon write here eveything, then open a special topic on the forum, where the people in the trial can report the results.
Who wants to be part of the trial? Keep in mind that, with this treatment, people got cured of cancer, liver diseases, and other bad diseases. And the lady who used this treatment on people, says that, from this treatment, anyone can benefit, with any disease.
It's not a scam or something, i dont sell anything.
Anyone interested?
As far as supplements go, I think they do help but only if they are free of fillers. My favorite supplement company is Pure Encapsulations. Thorne Research is also great. They are not NEEDED but they do help. One I would recommend everyone take is magnesium. Ascorbic acid couldn't hurt either (unless you have problems with oxalic acid)
*Also, one thing that's been very helpful to my digestive system is sauerkraut made from home. I fermented it for 4 weeks. Came out great.
tryingtohelp2014, thanks once again! (For some reason I can't quote here).
Do you think you will try another round of what you did to get it out of your system again?
I tried a vegetarian diet for 6 months 2 years ago and fasting on water only for 6 days, but I lost so much muscle mass, even though I was resting. My subcutaneous body fat appeared to be about the same at the end of the fast, but my muscles had wasted and I lost so much muscle strength which took me many months to get back. I don't want that to happen again unless that's my only option.
Yeah, you were probably nutrient deprived as well. You were more than likely EXTREMELY vit A deficient. Probably K2 deficient as well. That's why the vit D was so destructive to you. Look up Chris Masterjohn's Vit D Paradox video for reference.
I have the following questions. If you're able to insert your answers below my questions, that would be good.1) Do you think it would be worthwhile trying a ketogenic diet high in protein and fat and low in carbs to get rid of the stored Accutane?
I wouldn't say high in protein. Keep your protein kcals at about 15-20% of total intake or it'll kick you out of ketosis. Maintain low levels of carbs and the rest of the kcals should all be healthy fats (like lard, butter (if you tolerate dairy), beef tallow, olive oil, nuts & seeds, coconut oil, etc).
I do believe that burning fat does get rid of toxins and if accutane is stored in the adipocytes, it will get it to the bloodstream where it can be eliminated. Perhaps the synthetic vit A is stored on the liver, though.
Be aware, if you don't eat enough fibrous vegetables on a keto diet, you will end up becoming nutrient deprived.
I did ketosis for a few months but I decided to only dip into it occasionally now. I think it was beneficial altogether, though.2) I've been avoiding foods high in retinol for more than 10 years. Should I continue to do this?
I wouldn't want to become deficient in any of the fat soluble vitamins. I say start ingesting it again (through whole foods)3) Should I stop taking fish oil and take straight DHA instead? What dose of DHA?
Fish oil is fantastic. Don't stop. Get the DHA & EPA from wild caught salmon or sardines if you can. That's best. If you can't look into algae which also has DHA & EPA. Avoid ALA as that's worthless. Next best option would be some unoxidized fish oil from a reputable supp company. However, it's probably destroyed while being shipped (the heat will oxidize the oil). And krill oil is more resistant than fish oil. Get that if you can.4) Should I be supplementing with vitamin C? Bioflavonoids?
No need for bioflavanoids. Pure ascorbic acid is fine. Just take 1g a day, preferably spread between two doses. One at night and one in the morning.5) My vitamin D levels on a recent blood test were at bottom of normal range. My doctor suggested that it should be much higher for general good health. Should I still be avoiding vitamin D at any dose and just get it from the sun?
I would avoid supplemental vit D. It's not even sulfated. Get it from the sun. Get out in the sun as much as you possibly can without being burnt. Healthy diet will improve resilience of skin to sun damage. I'm out in extreme sunlight for over 2hrs a day. The more the better. Be sure you are getting plenty of vit A and K2 to prevent calcification of soft tissues.6) Should I supplement vitamin K2, or just get it from foods high in K2?
Carlson brand is a good one. I just get it from foods though. Sauerkraut is fine.
You need to really focus on getting HIGH amounts of it as you've had soft tissue calcification in your past.7) You suggest B12 and P5P, which I'm already taking. How about taking other B vitamins, such as a B complex?
I personally don't because it can feed infections. I choose to drink down vegetable juice every day. If you can't do that, take a complex like once a week to be safe.8) Do you find that your symptoms are worse in summer when you are getting more vitamin D?
They are better in the summer. Mainly because the environment is warmer. My blood flows better.9) Do you think my low LH and low testosterone levels are caused by Accutane or my avoidance of vitamin A for so long?
You said you were vegetarian for 6 months? Your body is probably still recovering from that. There can be many reasons for that. Eat TONS of coconut oil and animal fat (from grass-fed/wild-caught animals of course to avoid toxins)10) How do I raise my LH and testosterone naturally? My doctors want me to take testosterone, which I'd rather avoid as it is a life long commitment.
I would never take hormones. Look up this Body IO podcast if you are interested in supplementing testosterone: Dr. Mark Gordon - Testosterone. Body IO FM #51
Hormones can typically get stabilized naturally through diet and lifestyle. Stress management is critical.
Hope this helps a little. Sorry I can't go in depth with my answers. My eyes are so dry. I can barely use a computer for an hour each day. Couldn't go back and review what I typed. Excuse the typos and errors/poor grammar.
Also, look at my previous post for diet advice. Paul Jaminet, Chris Kresser, Chris Masterjohn, Mark Sisson, Sarah Ballantyne are all names you should look up often if you want extra help. Honestly, I think all accutane victims should be eating Sarah Ballantyne's autoimmune protocol diet.
I came across something, a treatment which involves simple things like water, teas, food regime... people being cured of cancer and bad diseases by doing this.
If a regimen of water, teas, and food could cure cancer it would be widely known at this point and cancer would be largely eliminated. I understand that our desire to be cured makes us susceptible to false hope and snake oil pitches, so it's imperative that we stay vigilant against this sort of thing. Even if it doesn't cost anything, it's still a waste of time.
On 8/28/2015 at 10:43 AM, Accutainted4ever said:Dubya, according to the information on the Weston Price Foundation website, toxicity from vitamin A only occurs in doses above 100,000iu.
Regardless, I won't be taking any more vitamin A supplements.
Do you get any bad reaction from eating foods very high in retinol like liver?
How did you respond to Clomiphene citrate? What dose did you take and how much did it increase your T levels? I'm considering taking it before committing to TRT.
The WAPF is largely funded by supplement companies. Take that to mean what you will.
The generally accepted RDA for vitamin A is 3,500IU daily for men. This should be enough to prevent deficiency and to avoid even a remote chance of toxic effects.
I despise the taste of liver, but eat a diet which is probably moderately high in retinol and take mutivitamins containing vitamin A. I never bothered to do the math on retinol intake, but don't experience any noticeable negative effects from it.
Have most all of my lab reports posted here:
[Edited link out]
The clomiphene (think it was 15 or 25mg every other day) was administered to see if there was a problem occurring at the hypothalamus, pituitary gland, or testes. It wasn't really a treatment as much as a diagnostic tool. I tried many different types of TRT but they didn't help with libido or ED. My personal recommendation is to try TRT for a brief time, and if it doesn't improve your symptoms, then quit taking it before you shut down natural production.
Thanks very much guys for your excellent information. Very helpful!
I've actually had very low testosterone and LH levels for more than a decade now. Last lab test was 261 total testosterone. Free testosterone was below the bottom of reference range and estradiol was at bottom of reference range so I would probably benefit from TRT, although I'd still like to avoid it.
I've increased my saturated fat intake and will retest in a month. I was hopeful that adding retinol capsules and vitamin D3 would increase my hormone levels, but I quit as soon as I read tryingtohelp2014's post.
yetanotheraccutanevictim, I wasn't aware that vitamin A prevents calcification of soft tissues. I knew that vitamin K does this and it's good that green leafy vegies which I eat a lot of are very high in vitamin K.
Fish oil has much more EPA than DHA and it seems that we need more DHA. Do you know what the ideal EPA:DHA ratio is? I guess I could take DHA capsules in addition to my purified fish oil liquid to even out the ratio.
Do you know if Chris Masterjohn would know about treating the long-term side effects from Accutane? I saw he does phone consultations for $75
Also, have you thought about fasting (drinking water only) for a period of time? I wonder if this would be a good idea to clean out our body?
A place called True North Health Centre does fasting (removed).
Thoughts?
Out of curiosity was anyone else born with ceasarean section? Also I spend like my first hour of live in breathing cabinet or whatever it's called in english. Because of these I didn't get many good bacterias which help with immune system and prevent allergies and skin problems. Nevertheless I was very healty as a child before taking Accutane.
I came across something, a treatment which involves simple things like water, teas, food regime... people being cured of cancer and bad diseases by doing this.
If a regimen of water, teas, and food could cure cancer it would be widely known at this point and cancer would be largely eliminated. I understand that our desire to be cured makes us susceptible to false hope and snake oil pitches, so it's imperative that we stay vigilant against this sort of thing. Even if it doesn't cost anything, it's still a waste of time.
Well, i know people, actually many, cured of cancer with this, serios people, not scammers.
If you don't wanna believe, as you wish, go and buy pharma meds with side effects, they are better 
Oh yeah, stay vigilant when it's about treatments with zero side effects and possible benefits, that's really smart ))
Waste of time....we are already wasting our time with facebook, forums and things like that. Isn't it better to waste it with something that may help? The 1.000.000 $ question.
There are many natural treatments for diseases, but they dont show commercials on tv...they are burried alive by the pharma. The industry's intentions is to sell their meds. But you can think as you like. If you don't wanna try, it's fine with me.
Thanks very much guys for your excellent information. Very helpful!
I've actually had very low testosterone and LH levels for more than a decade now. Last lab test was 261 total testosterone. Free testosterone was below the bottom of reference range and estradiol was at bottom of reference range so I would probably benefit from TRT, although I'd still like to avoid it.
I've increased my saturated fat intake and will retest in a month. I was hopeful that adding retinol capsules and vitamin D3 would increase my hormone levels, but I quit as soon as I read tryingtohelp2014's post.
yetanotheraccutanevictim, I wasn't aware that vitamin A prevents calcification of soft tissues. I knew that vitamin K does this and it's good that green leafy vegies which I eat a lot of are very high in vitamin K.
K1 doesn't have those beneficial effects. Only K2. Your body doesn't convert K1 to K2 very well. You need bacterial fermentation to do this. Eat fermented foods or reproductive fats of animals like butter, egg yolks, milk, etc.. Supplementing K2 is perfectly okay. Again, I use Carlson brand. MK7 and MK4 mixture.
Fish oil has much more EPA than DHA and it seems that we need more DHA. Do you know what the ideal EPA:DHA ratio is? I guess I could take DHA capsules in addition to my purified fish oil liquid to even out the ratio.
EPA to DHA ratio doesn't really matter. Both are beneficial. However, DHA is converted to EPA more readily so it's better to get more DHA.
Do you know if Chris Masterjohn would know about treating the long-term side effects from Accutane? I saw he does phone consultations for $75
He definitely would have useful information to offer. He's incredibly smart and he delves deep into the research. If you have $75 to spend, go for it. Update us on the forum how it goes if you get him on the line.
Also, have you thought about fasting (drinking water only) for a period of time? I wonder if this would be a good idea to clean out our body?
A place called True North Health Centre does fasting (www.healthpromoting.com).
Thoughts?
Water fasting is great for detoxing but can be dangerous. I only did a 5 day one. Be careful. I would just fast with vegetable juice if you don't want it to be dangerous. We're already nutrient deprived. You don't want to make that problem worse. Also, fasting screwed up my hunger hormones for a good while.
I'm going to do more gallbladder flushes, personally. We'll see where that gets me. I've only done two so far.
Hey guys,
I haven't been on here for a while because I just had all these health issues on my mind. Has anyone found a cure yet? I have been spending thousands of dollars on tests and all kinds of pills. Mate I can relate to nearly everyone just on this page 354.
I have low T. I found I couldnt tolerate TRT. I felt very unwell after a few days. Perhaps its bad liver detoxification, who knows. I take the Testogel occasionally.
As for the poor thinking ability after Accutane, which I can testify, and it only gets worse. Today I could hardly remember words and things that I had just been thinking about a minute prior. This is nearly 15 years post Accutane. It was originally a chemotherapy drug as everyone here knows. We all have chemo brain: http://www.foxnews.com/health/2012/11/27/evidence-chemo-brain-verified-by-researchers/
If anyone else has done 23andme, contact me, I am interested to see where our genetic defects overlap to see if we can triangulate any possible culprits.
I don't think I've been on here since around page 250. Any potential miracles? I tried the King of the herbs as my friend calls it: Cannabis. It didn't really help anything, except make me more sleepy, fatigued, and produced diarrhoea. I took it as a fresh organic herb orally, not smoked. I have high cortisol and cannabis raises cortisol and lowers testosterone. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2863108/
Man I've done and corrected so many spelling mistakes just now, much worse than when I was on last.
Cheers
Mind if I ask if either of you guys are carriers of a CFTR mutation (cystic fibrosis)?
4/4 post-Accutane sufferers I have spoken with who had the 23andme test done were reported as carriers of cystic fibrosis. 3 of us had the delta-F508 mutation specifically. The fourth I am unsure of, but he said he is a carrier of some form of CFTR mutation. ...The odds of 4/4 randomly selected people being carriers is slim but I'm not sure what the connection would be with Accutane side effects.
Mind if I ask if either of you guys are carriers of a CFTR mutation (cystic fibrosis)?
Hey mate, nope, on Nutrahacker the only carrier gene I had was the H63D haemochromatosis one.
Have you guys read the negative reviews about 23andme? There are heaps of them!
Nope, where are they all? Why so negative? Are there data mistakes?
What websites have you guys run your data through? I have found Nutrahacker the best followed by Mthfrsupport. Genetic genie is very basic. Promethease is too broad and does my head in. Not very interesting. And I've just done the free Amy Yasko one which looks pretty thorough on the methylation side of things. Are there any others?
Has anyone tried Nicotinic Acid/B3? I've been reading some textbooks on Orthomolecular Medicine and Abram Hoffer comes up a lot with B3. It seems he used it for nearly everything.
B3 deficiency is known as pellagra. It is known as the 4 Ds: diarrhoea, dermatitis, dementia, and eventually DEATH. Well, I've had diarrhoea (diagnosed as IBS) ever since starting Roaccutane. Dermatitis goes without saying. Dementia. Now I'm a nurse and work with a lot of dementia patients. Basically its just worsening memory loss till you can't remember even how to put a sock on. A dementia patient basically just sits there with a blank mind not really comprehending anything. That is at the very end. At the beginning of dementia it's just a fuzzy brain and difficulty in remembering things. Sounds a bit like me haha. Let's not talk about the death part. https://en.wikipedia.org/wiki/Pellagra - check out the other symptoms like hair loss.
I've been trying 100mg Nicotinic acid and I think it has helped my mood but it does make me sleepy, so I'm going to cut back a lot. Maybe just the RDA of 15mg.
Mind if I ask if either of you guys are carriers of a CFTR mutation (cystic fibrosis)?
4/4 post-Accutane sufferers I have spoken with who had the 23andme test done were reported as carriers of cystic fibrosis. 3 of us had the delta-F508 mutation specifically. The fourth I am unsure of, but he said he is a carrier of some form of CFTR mutation. ...The odds of 4/4 randomly selected people being carriers is slim but I'm not sure what the connection would be with Accutane side effects.
I have the G551D mutation
The Promethease report says it's beneficial, actually. Hm.. Nevertheless, it's not the delta-F508 mutation.
Here's info about what I have:
http://www.snpedia.com/index.php/Rs75527207
Please share any other sites you come across that analyze your raw DNA data and spit out reports.
Go here for reviews on 23andme and click on the 1 stars. There are 360 of them!
Go here for reviews on 23andme and click on the 1 stars. There are 360 of them!
They aren't negative regarding the accuracy. It's people complaining about other things like not being specific enough with their ancestral background etc. 23andme has had their methods analyzed with top standards to ensure that it is accurate. It's one of the best tests that we have available at this time.
Here is tour cure guys a brazilian discovered the cure of cancer
[Edited link out]
It might work for you , but dont dell your Labs what it is just tell them whats the name of thr substance and make this capsukkr its very very very cheap , so you dont have to worry about giving a shot.
The reason why you shoudnt tell its properties of cancer cure its beacause the farmaceuticas industries is trying To supress this information, so just tell its for some research kr whatever but seriously!!! Try it !!! I fell 120% better after taking these pills !!!!
Sorry for the por writing (im on my phone)
Heres the wikipedia link for the substance
https://pt.m.wikipedia.org/wiki/Fosfoetanolamina
Please write me back with your cure story too
On 9/3/2015 at 12:27 PM, Jahbless said:Here is tour cure guys a brazilian discovered the cure of cancer
[Edited link out]
It might work for you , but dont dell your Labs what it is just tell them whats the name of thr substance and make this capsukkr its very very very cheap , so you dont have to worry about giving a shot.
I'll give it a shot since I'm not worried about taking unknown questionable pills, like Accutane.
Actually, I've already been on chemo. I'm all good.
Has anyone here done the niacin flush protocol? Looks EXTREMELY effective based on the research. Requires the use of a sauna.
I recommend getting the 2002 edition of the book, Clear Body Clear Mind by L. Ron Hubbard for details.
Here are video summaries as well:
disclaimer: I wouldn't recommend doing this protocol unless you read the book, first and understand all possible side-effects. If doing the protocol, follow it perfectly.
