Notifications
Clear all

Repairing the long-term damage from Accutane

 
MemberMember
8
(@timatron)

Posted : 10/19/2014 2:35 am

Do they have this epigenetic test here in australia?

I just checked the site 23andme out. It seems to be just a dna ancestry service, they write that they no longer perform the dna health service...

I'm up to page 80 now. Its getting a bit tedious, and indigo no longer posting vids every page or so.

Quote
MemberMember
153
(@crank92)

Posted : 10/19/2014 4:54 am

[Edited link out]

Timatron this is JMSIL (James M Silcock). Sadly he did indeed end it all due to the side effects of (Ro)Accutane. I met his parents when I attended a protest at the UK Roche HQ in April this year, lovely people. It's also sad that Roche simply brush these cases off as "acne causes depression".

I am looking to get a 23andMe test done, only problem is I'm beyond skint. After finishing uni, I've got two maxed out overdrafts, a few K in debt with the parents and 20-30grand in debt with the government...

Anonny you do contradict yourself at times you're aware? Sometimes you mention initial results 'in a few weeks' other times a few years, and sometimes not even after years unless you do flushes/herbs/iso/homeopathy etc... Again, I'm not trying to troll you just pointing it out. I would have liked to continue it longer and to an extent I do, but somedays I work 15 hour shifts with only an hour break (and we thought slavery had been abolished) and eating enough is just not possible if only fruits and veg.

Also Timatron one thing which I wish I would have done is written down everything that people found 'significantly' useful. So not temporary improvements but something that either helps improve the condition or manages symptoms in the long term. If you manage to do that, would be useful to say the least!

Quote
MemberMember
157
(@tanedout)

Posted : 10/19/2014 6:39 am

I just checked the site 23andme out. It seems to be just a dna ancestry service, they write that they no longer perform the dna health service...

They still provide the 'raw data' in addition to the ancestry analysis, and you can get a health analysis from another company using the raw data. There's a thread on it over on the ATM forum. Interestingly 5 out of 5 taners who got the test done tested positive as a carrier of Cystic Fibrosis;

http://www.allthingsmale.com/forum/showthread.php?23188-Have-any-of-you-had-a-23andme-genetic-test

Quote
MemberMember
157
(@chico-esposito)

Posted : 10/19/2014 7:39 am

Also Chico,

 

Your views seemed to be aligned with anonny's more than most. Just out of curiosity are you following his protocol; raw vegan, flushes, etc etc.? If so, any notable sustained improvement?

 

I'm just asking because it would be handy to have several individuals in all of the recommended treatment modalities. I'll admit I've tried following raw vegan 3 times now, each time I improve by a week. 1st time was 3 weeks, 2nd 4 weeks, 3rd 5 weeks. I probably would have lasted longer if I wasn't now the perennial stoner which lowers will power and very hungry. And as much as the pro-stoners like to say it doesn't affect motivation, that's BS.

Your right i do align myself more with anonyy's kind of philosophy. I'm not following his protocol although our protocols are quite closely matched it would seem. I have been raw vegan for 6 months, 100% and it was unsustainable due to finincial reasons more than anything else. I've done numerous 10 day, 14 day and one 31 day juice fast and done many liver flushes and various other things. Right now my diet is not vegan, although it's 100% vegetarian. I stay away from anything with retinol in it, so no dairy, no milk, egg yolks, no fish, no meat, no supplements etc.

I feel best on a vegan diet, so it's usually fruit, vegetables nuts and seeds....i make two green smoothies a day with mango, banana, spinach, kale, coriander and seaweed (fresh dulse or fresh kelp). Sometimes i do one called a "glowing green smoothie" which there is a recipe for by Kimberley Synder on Youtube. But the non vegan food is egg whites, i eat a lot of egg whites (highest food in methionine). It's to sustain my body composition more than anything else, but i find i thrive better on 100% vegan, my symptoms are lessened, not cured, never cured, but lessened when i stay away from retinol in all forms. What it is... is a maintenance diet, it stops any further damage being done, i find if i eat retinol the symptoms get a lot worse and the problems tend to migrate to other areas in the body over time.

I drink a lot of herbal teas with echineaca in them, things with kidney herbs like nettle, red clover, liver herb teas with dandelion root and milk thistle. This is to help the lymph, kidneys and liver. I also do liver flushs, but every time i try it fails, i presume that's because my liver is so congested that it's not capable of expelling stones. My bile flow i feel, has been affected for years, i've never cured it.

Quote
MemberMember
14
(@marlin15)

Posted : 10/19/2014 10:39 am

chico what side effects have you had from the accutane? Anything dry skin/lips related? Or joint pain, ibs problems?

Quote
MemberMember
359
(@dubya_b)

Posted : 10/19/2014 11:05 am

@tanedout- It was only 4 out of 5 who carried a Cystic Fibrosis mutation. The 5th person to share their data didn't have it. The odds are pretty astounding, but it's hard to say what the link would be between Cystic Fibrosis and developing Accutane side effects.

@tryingtohelp14- For whatever reason, the 23andme test only scans for variations in the genes that encode enzymes involved in metabolic pathways that provide methyl groups. They don't provide data on the actual methyltransferase enzymes which attach methyl groups to DNA, or HDAC enzymes which are involved in opening up chromatin so these reactions can take place.

Our wonderful FDA decided 23andme's interpretation of the clinical relevance of genetic data would cause panic, so they ordered them to stop providing that service.

In the court order, they gave some lame theoretical example of a woman potentially performing a self-mastectomy because her 23andme report stated she was at a higher risk for breast cancer.

...something that never happened, but hundreds of reported Accutane suicides and hundreds of thousands of reported adverse reactions to Accutane don't matter to the FDA.

So glad they care about the health and welfare of the American public.

You have to run your 23andme data through a separate interpretation service like promethease now.

Quote
timatron, Crank92, tanedout and 6 people reacted
0
(@Anonymous)

Posted : 10/19/2014 12:16 pm

I always said it took me 2 years to get results. When i said 3weeks yea it happen some times, but since then i checked more, talked to more people and in reality it's longer than that 80% of the time. The duration are really not the most important things i said here. Nobody is the same, you have to stop looking for testimony of others, we don't need that when we understand physiology. I only saw one person (with accutane issue) having good results in 3weeks 100% raw without coffee and other proper-detox preventing stimulant (and of course without cannabis i don't have to say it...), and the most important thing, at rest, if you use your already low adrenals energy with excercice or a very stressfull life you won't be able to detox/regenerate even with perfect diet & herbs.

And the most important thing is, are your kidneys filtering? is there significant amount of sediment in your urine?

I don't do homeopathy, i just did isotherapy but i didn't knew how it worked at that time, in reality (apparently) it's only use is to slow down the immune reaction towards accutane mutated/damaged cells, so it's only facultative. I only tried it cause like i said before i tried everything, and since i always believed it was only a buch of sugar placebo i didn't cared much... (i saw a lot of people here afraid of it even if they say it's only sugar without any active molecule), but strangely it had an effect, but it's facultative and useless, it's not what i came here to talk about, i came here to talk about physiology & the true cause of health issue, if you want to argue about that you really didn't understand what i came here to talk about, i did myself 2 post about that and always said it was a curiosity, and i did 250+ about physiology.

You can eat enough with only fruits & veggies, if you only eat 5 banana & 3 apple of course it's not enough. If you eat 8 bananas + 300grams of dates + whatever fruit you want + some cooked veg/sweet potato for example you have enough.

Quote
MemberMember
37
(@chiron)

Posted : 10/19/2014 1:03 pm

What do you guys use for shaving? I'm having a hard time finding a way that doesn't irritate my skin or lips

I just grew a beard. Evena little stubble looks manly and then you can just trim it with clippers instead of shaving.

Quote
MemberMember
17
(@shadeo14)

Posted : 10/19/2014 2:33 pm

 

What do you guys use for shaving? I'm having a hard time finding a way that doesn't irritate my skin or lips

I just grew a beard. Evena little stubble looks manly and then you can just trim it with clippers instead of shaving.

Funny that's also what I've been doing, helps to hide some remaining acne too. My beard is a diff color than my hair though, not sure how to address that completely different concern

Quote
MemberMember
37
(@chiron)

Posted : 10/19/2014 3:12 pm

 

What do you guys use for shaving? I'm having a hard time finding a way that doesn't irritate my skin or lips

I just grew a beard. Evena little stubble looks manly and then you can just trim it with clippers instead of shaving.

Funny that's also what I've been doing, helps to hide some remaining acne too. My beard is a diff color than my hair though, not sure how to address that completely different concern

Mine's turning grey in areas so I feel you. C'est la vie. :)

Quote
MemberMember
17
(@shadeo14)

Posted : 10/19/2014 3:49 pm

Yep mine too, it happens. Luckily its more socially acceptable to have a beard these days

Quote
MemberMember
8
(@timatron)

Posted : 10/19/2014 5:21 pm

On 10/19/2014 at 5:54 PM, Crank92 said:

[Edited link out]

Timatron this is JMSIL (James M Silcock). Sadly he did indeed end it all due to the side effects of (Ro)Accutane. I met his parents when I attended a protest at the UK Roche HQ in April this year, lovely people. It's also sad that Roche simply brush these cases off as "acne causes depression".

I am looking to get a 23andMe test done, only problem is I'm beyond skint. After finishing uni, I've got two maxed out overdrafts, a few K in debt with the parents and 20-30grand in debt with the government...

Also Timatron one thing which I wish I would have done is written down everything that people found 'significantly' useful. So not temporary improvements but something that either helps improve the condition or manages symptoms in the long term. If you manage to do that, would be useful to say the least!

Man I cant believe that jmsil is gooooone, only last year? He seemed to be a legend. If he only hung on till we found a cure. Dang man he should have at least tried being a stoner for a month, that seems to be the main cure all in the early posts.

Roche should at least help pay for all our medical expenses. Has anyone at least asked them? A bit unkind of them if they don't.

I have only been jotting down things that I personally think might be useful as I go along. I can post that afterwards if youre interested

On 10/19/2014 at 7:39 PM, tanedout said:
On 10/19/2014 at 3:35 PM, timatron said:

I just checked the site 23andme out. It seems to be just a dna ancestry service, they write that they no longer perform the dna health service...

They still provide the 'raw data' in addition to the ancestry analysis, and you can get a health analysis from another company using the raw data. There's a thread on it over on the ATM forum. Interestingly 5 out of 5 taners who got the test done tested positive as a carrier of Cystic Fibrosis;

[Edited link out]

Do you know if this test can be done in australia? It doesnt seem like it according to a quick scan of the website. I would definately do it but I dont think so since it is a blood test. And how much is the health analysis from the other company scanning it? Cheers

Crank was there anyone from this thread at the protest? Would have been awesome to be there. Throw a few rocks at roche CEOs head.

Quote
0
(@Anonymous)

Posted : 10/19/2014 9:19 pm

Accutane will only mask the symptoms and will not fix the cause and you'll force the body to be chronically burned from the inside for years until you reach the degenerative stage and your life will be not liveable anymore. You choose.

Quote
MemberMember
8
(@timatron)

Posted : 10/20/2014 4:38 am

Up to page 104.

There is still no conclusive evidence whether it is Vitamin A toxicity or Vitamin A deficiency

What do you guys think?

I don't know what to think.

Someone posted some scans of a textbook chapter on Vitamin A.

It appeared my roaccutane symptoms resembled more the deficiency.

However the ultimate test is actually taking vitamin A or cod liver oil.

Have any of you guys experimented with it?

I take it sometimes. Its a bit of a mixed bag for me side effect wise.

It makes my darkness/dullness/anxiety worse.

However the reason I like taking it, is it gives me a nice deep voice for about a day, and good morning erections. haha.

Goodnight

Quote
MemberMember
157
(@chico-esposito)

Posted : 10/20/2014 11:16 am

I have taken cod liver oil in the past and it's the worst thing you can possibly take if you've got accutane side effects, i can not emphasise that strongly enough, stay away from cod liver oil.

Quote
0
(@Anonymous)

Posted : 10/20/2014 3:45 pm

Yes i experimented with it some years ago, i felt worse and better (in a way) taking beta-carotene. I took it for 2-3 month then i tried fermented skate liver oil, it was stronger than beta-carotene since it's performed vitamin A but even if i still had positive effects the negatives one escalated too quickly. I still can't understand in which way it maked me feel better, maybe bringing some balance in the different form of vitamin A ratio... idk.

Quote
MemberMember
8
(@timatron)

Posted : 10/20/2014 5:06 pm

I have taken cod liver oil in the past and it's the worst thing you can possibly take if you've got accutane side effects, i can not emphasise that strongly enough, stay away from cod liver oil.

Chico youve been on this forum since its inception. By now you would have gained much experience.

Can you tell me what supplements have helped and what you take currently if any?

Cheers

Quote
MemberMember
153
(@crank92)

Posted : 10/21/2014 3:55 am

Chico; that is some solid discipline to keep it up for that long. I have to agree that one of the reasons I struggle to keep it up is the rapid weight loss. I'm not suggesting that it is a lack of protein (as weight loss is not dictated by protein content of diet), but simply difficulty in maintaining sufficient calorie intake.
For example, currently I work as your average waiter whilst waiting to find other jobs. That's 30-40 hours/week marching around. Then there is the fact I exercise about 4-6x/week whether it be resistance training or MMA, then there is also the dogs which need an hours walk per day. All this adds up to needing about 5,000/kcal per day. Getting that from fruit and veg is very difficult. Even Durian Rider who eats like 30 banana's a day says he only needs 3,000kcal/day, so that would suggest I need to eat about 50 banana's a day. Which quite frankly is bonkers. Currently I probably eat about a dozen banana's a day, a few other bits of fruit and about 1/2kg of raisins - that adds up to roughly 2,500-3,000kcal/day. The rest I get from eggs, turkey and other paleo based animal products.

Also Chico, I know your a strong anti-cannabis proponent but I would perhaps have a chat with Roland1986 if you ever see a post from him. I think he suffered similar sides to you in regards to general severe dryness (if I have remembered your sides correctly). He did take RSO for 2-3 weeks before quitting due to unbearable drowsiness (he had family and high pressure job). However, if I remember correctly he had significant improvement in all his sides. Although, I can't say that with 100% conviction and I don't know if any of those improvements lasted after he came off of it.

Anonny; I know you suggest not doing intense exercise, but honestly it seems to have no negative effects for me. Honestly, now I feel fine. It's literally just my numb dick, potential Peyronie's and 'under control' ED and other sexual symptoms. I know some individuals feel worse after exercise but not for me. Then there's all the benefits of exercise such as improved hormonal profile, increased blood flow, balancing of neurotransmitters etc.

Also I have to mention this fruitarian diet seems to have the longest 'noticeability of improvement' out of anything I have ever heard of, medication or anything. Before I took Accutane I tried ketogenic paleo for my skin and within 2 weeks my acne began to fade. After 'tane the 'Specific Carbohydrate Diet' brought about symptomatic improvement in 3 days (although my gut is still healing now). MJ brought about improvement in my sexual sides within a week too. RSO brought about improvements in my gastric issues within 3 weeks and so forth.

Timatron: I'm afraid I was there with mostly parents of the suicide victims, however, there was one other sufferer. He used to be active on AllThingsMale.com (another more sciency accutane forum), but he is no longer I don't think. I don't know his username, he was active before I had even taken 'tane. Can check with Dubya if you want to know more.

TemperateCent; Hi TC,

I'll be honest and say you might be fine and forever be cured of acne. However, look at it like this. Accutane can permanently clear acne. This probably means that a lot of other sides are also potentially permanent. Now go look on wiki for a quick look at some of these side effects. There are literally dozens and dozens. All of those are potentially permanent, as you can see from this thread that is very real possibility. Also throw in the fact some of these side effects aren't even listed yet e.g. Severe Sexual Dysfunction.

I know it's a pain, but I would honestly try every other feasible option before deciding on Accutane. Whether it be something like ketogenic paleo, that laser skin therapy, aggressive use of topical applicants etc. etc. Accutane is by far the worst decision I have made in my life and I have done some stupid sh*t in my time.

Quote
MemberMember
8
(@timatron)

Posted : 10/21/2014 4:39 pm

RSO brought about improvements in my gastric issues within 3 weeks and so forth.

 

Timatron: I'm afraid I was there with mostly parents of the suicide victims, however, there was one other sufferer. He used to be active on AllThingsMale.com (another more sciency accutane forum), but he is no longer I don't think. I don't know his username, he was active before I had even taken 'tane. Can check with Dubya if you want to know more.

Youve tried RSO?

Would I like to get my hands on that! Alas in australia its illegal. Where do you live? US? I've been thinking of travelling to some country where its legal and for a month try healing myself with RSO. I've got a friend with crohns whos also interested in doing this.

Cheers

Quote
MemberMember
8
(@timatron)

Posted : 10/21/2014 6:48 pm

Is flaxseed oil linked to facial flushing? cos i've taken it for two days and my face is red like a beetroot....not cool. Oregano oil...hmm might try that, add that to the list biggrin.png

Hey chico, you posted this last year. Did you find out what cured it? My face is always partially hot and dry, and flax oil makes it so much worse.

Quote
MemberMember
180
(@roland1968)

Posted : 10/22/2014 3:38 am

I am still around. But mostly as a passive reader. If you have any questions I am happy to help.

Also Chico, I know your a strong anti-cannabis proponent but I would perhaps have a chat with Roland1986 if you ever see a post from him. I think he suffered similar sides to you in regards to general severe dryness (if I have remembered your sides correctly). He did take RSO for 2-3 weeks before quitting due to unbearable drowsiness (he had family and high pressure job). However, if I remember correctly he had significant improvement in all his sides. Although, I can't say that with 100% conviction and I don't know if any of those improvements lasted after he came off of it.

Quote
0
(@Xavier Gil)

Posted : 10/22/2014 4:39 am

I'm up to page 57 of this forum. Whatever happened to indigorush josephbuchagini and jmsil? Chico, good to see some of the originals on here! I'm up to page 55 whih is back in 2012.

I also tried to read it all but I stopped on page 80. This thread is very interesting but also unreadable. Now I only read the new posts.

I think that we should organize all this information in order to be helpful to new readers like us. Actually I think that it's time to give a new step to this discussion. I suggest the following:

  • Create a isotretinoine specialized website with all the studies and information that we have compiled.
  • Organize an international association in order to get our targets. There are thousands of affected people and we can't stay at home waiting for death. We must fight seriously against this body degeneration before it kills us.
  • This could be our targets:
  1. Fight against the pharmacy industry and remove this medicine from all countries.
  2. Get funds in order to request a medical study that proves our long-term side effects. It's the first step to be healed.

We all want to get our lives back and we don't have nothing better to do atn this moments than investigate and fight against this damn drug. If you find it interesting we could create a private thread and start working on it as soon as possible. I am webmaster and I could contribute with the web developing. Sorry for my english.

Quote
pathtorecovery91, timatron, Dubya_B and 6 people reacted
MemberMember
33
(@ihateaccutane)

Posted : 10/22/2014 10:40 am

 

I'm up to page 57 of this forum. Whatever happened to indigorush josephbuchagini and jmsil? Chico, good to see some of the originals on here! I'm up to page 55 whih is back in 2012.

I also tried to read it all but I stopped on page 80. This thread is very interesting but also unreadable. Now I only read the new posts. I think that we should organize all this information in order to be helpful to new readers like us. Actually I think that it's time to give a new step to this discussion. I suggest the following:

  • Create a isotretinoine specialized website with all the studies and information that we have compiled.
  • Organize an international association in order to get our targets. There are thousands of affected people and we can't stay at home waiting for death. We must fight seriously against this body degeneration before it kills us.
  • This could be our targets:
  • Fight against the pharmacy industry and remove this medicine from all countries.
  • Get funds in order to request a medical study that proves our long-term side effects. It's the first step to be healed.

We all want to get our lives back and we don't have nothing better to do atn this moments than investigate and fight against this damn drug. If you find it interesting we could create a private thread and start working on it as soon as possible. I am webmaster and I could contribute with the web developing. Sorry for my english.

Can you make a forum? ( like propeciahelp style?)

Quote
MemberMember
0
(@ct1111)

Posted : 10/22/2014 2:21 pm

i am recovering from post accutane problems, i did so by applying tons of grape seed oil (high in linoleic acid) to my upper arms and experienced muscle twitches shortly afterward. since then I've been recovering a little each day, i kid you not, nothing worked for years until i came across this shot in the dark. it took two years for it to come on and it will take two years to go away, I'm hallway through and recovering everyday. good luck to you all

i am recovering from post accutane problems, i did so by applying tons of grape seed oil (high in linoleic acid) to my upper arms and experienced muscle twitches shortly afterward. since then I've been recovering a little each day, i kid you not, nothing worked for years until i came across this shot in the dark. it took two years for it to come on and it will take two years to go away, I'm hallway through and recovering everyday. good luck to you all

Quote
0
(@Anonymous)

Posted : 10/22/2014 4:22 pm

a few things about the epigenetic mechanisms related to accutane.First of all i feel very sad to see people questioning this theory.The reason is because it is not longer a theory but a fact.A recent study which was posted a few pages ago first by dubya and then by me clearly shows that isotretinoin does induce epigenetic changes which persist after the cessation of therapy.I repost this study in big font size for some people here finally to see:

Effects of isotretinoin treatment on epigenetic programming in T cells

[Edited link out]

secondly i have to say again that there is absolutely no chance whatsoever that isotretinoin or its metabolites are still present in our body.13-cis retinoic acid(isotretinoin) gets metabolised to all trans retinoic acid.Both 13-cis retinoic acid and all trans retinoic acid have a short half life which proves that neither of the metabolites is able to get stored in the body longterm(especially in the brain tissue).For those who don't know, gray and white matter is basically brain tissue.Here is the table from a study proving that both isotretinoin(13-cis retinoic acid) and all trans retinoic acid cannot get stored longterm:

[Edited link out]

@crank92 the user in the allthingsmale forum you mentioned is me.I was the moderator of the forum there.I left because i got frustrated by some users.I requested my name to be changed to formermember1234 etc.

 

 

i would also like to mention that most chemotherapy drugs induce epigenetic changes and this is also a proven fact and there are numerous studies out there.So chemotherapy drugs changing the epigenetic profile is not something new and is not related to isotretinoin only.The main epigenetic mechanisms of most chemotherapy drugs are demethylation and histone deacetylase inhibition.So they affect the methylation and acetylation epigenetic patterns.

 

 

Quote