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No one can contest that any drug or any change in your life affect epigenetic, and also no one can contest that epigenetic "change" are a natural body mechanism that allow him to survive and adapt to changes, and that only himself can restore the proper balance back, in the proper medium & conditions. I believe some of you mix temporary gene expression perturbation by a toxin & true "long-lasting" epigenetic adaptation "changes". But the solution for both issue is the same as always, just one is more difficult and takes more time than the other to restore.
Not so sure it can be claimed to be a written-in-stone fact yet, but we are in fact discussing true "long-lasting" epigenetic changes caused by Accutane as a potential explanation of our symptoms.
This hasn't been a conversation about "temporary changes" in gene expression.
Xavier, I sent you a PM.
- 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.
1. will be hard
2. also very hard
I'm just hoping a supplement or two will fix me up
Up to page 171 now. It gets pretty messy and pointless up to this part
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.
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.
I totally agree with you xavier. Something along those lines NEEDS TO BE DONE. If anyone on here has experience or even a friend that could help, please ask them to help. I say we should make a sub forum to solely discuss what we could do along the lines of making a website and taking action.
Talking on here about possible treatments and cures is getting nothing done on our part.
Dubya or crank or somebody, would you want to make a sub forum to discuss taking action on things we could do like a website etc.?
The time of taking suplements has passed. If suplements would help, this forum would be closed time ago.
I am discussing this idea with Dubya by e-mail and we'll share it with the users of this thread and other forums dedicated to isotretinoine. Everybody is invited to send ideas and opinions.
I know it's hard but it's time to accept we are suffering a degenerative disease caused by isotretinoin. We are getting worse every day and it's obvious that nothing exists that could cure us. So let's dedicate all our efforts to stop this situation, or at least, to fight against it.
I am tired of listening doctor saying to me that there's no any evidence nor proof that I am affected by isotretinoine, and therefore they can't do nothing to help us. Meanwhile there dermatologists around the world continue prescribing this poison to innocent people like us.
So, what do we need? A scientific investigation in order to prove that we are affected by this damn drug? OK, let's ask for it. Do we need money before asking for it? OK, let's work to get that money.
Our lives depend on us.
On 10/23/2014 at 11:46 PM, Xavier Gil said:The time of taking suplements has passed. If suplements would help, this forum would be closed time ago.
I
I think you are very wrong here. Unless you can tell me with 100% certainty, how accutane continues to work 10 years later, you cant rule anything out. Good luck, because even Roche isnt telling. Thats also why you cant rule out an "unknown" metabolite still being in your body somewhere with 100% certainty.
The key to solving the isotretinoin problem is to work backwards.... and determine why four months of treatment is needed for this drug to work permanently. My thinking is it takes four months to wear out something in our body, and/or change the epigenetic expressions. Be it the methylation, sulfacation or glucordication pathways, something breaks down.... and when you begin researching all of these pathways, they all use co-factors to get started. All of these co-factors are simple vitamins and minerals used at different times, and in different combinations. Isotretinion has been proven beyond a shadow of a doubt to deplete certain co-factors. some people have more of these co-factors from diet, some people cant convert these co-factors correctly even BEFORE taking accutane NO MATTER HOW HEALTHY THEY EAT (MTHFR). IMO, thats the main reason some suffer worse than others. some only suffer partial side effects... some even have to take 3 courses of accutane for it to work! Now as someone who only took one course, at the lowest dose... i cant even imagine taking 3!!!
I have been reading a ton on AOX1 & the aldehyde oxidase retinoic acid link that needs B1 B2 and molybdenum. Interesting to note: some of the same side effects we suffer from (night blindness, cracking joints etc, are the same symptoms of molybdenum deficiency and low sufite to sulfur conversion (SOUX defect?) needed for joints/tendons/cartilage/ and detoxification) Moly is also used in these methylation and sulfacation pathways, and is drained under intense detoxification) Most of our sides mimic the list from candida/ poor gut health/IBS as well. Moly is needed for this too.
[Edited link out]
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
I don't take any supplements anymore. I've taken them all, i mean you name it and i've taken it, but i don't see things in that way anymore. There was a time were it was "just let me find that one supplement that cures this" that was my approach, i've spent tens of thousands on supplements, it just doesn't work like that. You take something, the power of placebo, you think it's working, then suddenly it stops and you go back to the way it was before.
There are broadly two types of people here, ones the flat out react to vitamin A in food and people that don't....i'm in the former. Vitamin A in the form of retinol is poison to my body. The best advice i can give for those people is you must avoid ALL forms of retinol completely. I still eat kale and spinach and high beta carotene foods but egg yolk, butter, milk, cheese, meat, fish - i don't touch it, you can't heal if you don't remove it, you'll just keep adding to the toxicity.
Now you might be the type that doesn't react to vitamin A, either way stay away from cod liver oil, just eat what you normally eat. When i was 1-3 years post accutane i could eat whatever i wanted, i didn't react to vitamin A, but the more i ate, the worse it got, now it's 11 years post accutane and i cannot eat it at all, it accumulates.
So my advice would be sort out your diet, eat fruits, vegetables, soak nuts and seeds, eat quinoa, lentils, beans etc. Understand nutrition, dry skin brush, yoga, weightlifting, lymph based herbal teas, kidney herbs, echinacea, cleavers, i drink a tea from Dr Stuart called skin purify it has nettles, red clover, burdock root, dandelion root, drink lots of water. I have a vitamix, i make 1-2 green smoothies a day, i strongly recommend that above juicing for the fiber benefits. Just healthy lifestyle choices really, no isolated supplements, just foods.
If you've got dry skin try natural moisturisers like Jojoba oil, grape seed oil, coconut oil, apply argan oil to your hair, explore them. Hope that answers your question timatron, obviously it's not for everyone but that's my honest opinion.
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.
Yeah it's very hard if you do a lot of strength based training, smoothie's are the easiest way of getting a lot of calories in quickly. You don't need to be 100% raw, that's something were it becomes too dogmatic and it can actually affect your health adversely over time. I eat about 40% raw. The main core is fruits vegetables, nuts and seeds. Beyond that you can add your eggs, turkey and paleo meats. Beyond that, there are potato's or grains, lentils etc. Alkaline foods basically, highly alkaline foods to push your body back into an alkaline state.
I know people say alkaline / acid is a myth, the blood streams ph is self regulated all the time, that's true but if the ph starts to move towards the acid side, the body leeches calcium, phosphorous and magnesium from the bones to buffer the acidity, because those minerals are highly alkaline. By eating an alkaline diet the body doesn't need to take these minerals in the first place.
This thread is BS it's obvious, you just have to look at "tryingtohelp", but your doctor is also BS thinking resolving health issue require to destroy tissue, without fixing the cause.
when i want your worthless eyeball lymph doc opinion, i'll give it to you anoy.
haha, so easy to proove how clueless you are.
the child who try to play doctor's which succeed nothing trying to mock expert who saved thousands, it's funny.
saying diet as no relation to health issue, you are as stupid as the medical doctor's who gived you accutane.
did you at least did a blood test before taking your shitty supplement who never helped anyone here? everything you said is just wind, empty like your brain (even if it's not completely your fault).
haha, so easy to proove how clueless you are.
the child who try to play doctor's which succeed nothing trying to mock expert who saved thousands, it's funny.
did you at least did a blood test before taking your shitty supplement who never helped anyone here? everything you said is just wind, empty like your brain.
heres a test anoy ... i want you to answer one question. ive already found the correct answer in reading drug metabolism that i havent seen posted anywhere on this board . ill even let you consult your eyeball guy.
1. Why is the accutane treatment 4 months long?
first it doesn't last 4 month, it last 6-8. and i already answered this question many times here, you can find it by yourself in every posts i made.
8 months??????? what planet are you on? cmon now... if you cant get even this fact straight, i cant help you.
From the American academy of dermatology:
Will isotretinoin cure me?
About 85% of patients see their skin permanently clear after one course of treatment. A course of treatment generally lasts about 4 to 5 months.
in france it's minimum 6 month, and personally they maked me take it for 7 month and a half, 30mg/day and i was skinny, 57kg, i believe it's not a too low dosage and duration for that weight. people who take it 4 month are lucky, i have some friend who also too accutane 4month who didn't had such extreme side effects as me and which are fine now.
in france it's minimum 6 month, and personally they maked me take it for 7 month and a half, 30mg/day and i was skinny, 57kg, i believe it's not a too low dosage for that weight. people who take it 4 month are lucky, i have some friend who also too accutane 4month who didn't had such extreme side effects as me and which are fine now.
answer why you think it has to be taken for 4 months minimum then?
I really don't know if i should care about how clueless you are or not. But of course you certainly have studied physiology, you are a doctor and you saved many people from cancer & other health issue certainly.
while you are trying to play doctor's you should take into account that acne as no age, and some people even after taking accutane for many years still have acne. but you are too limited to think about everything apparently, too anchored into your little box.
every disease aren't caused by a folate deficiency, cancer, joint problems, folate? no. every health issue have the same cause, you don't catch a disease in the middle of the night. there is health issue when cells are being poisoned/killed, the body is just a bunch of cells & two fluids, lymph and blood, is blood toxic/acid enough to kill cells? no or you'll be dead, is it lymph? yes, 3 times bigger than the blood system which role is to cleanse the cellular medium from cellular waste & toxins. deficiency aren't the cause of health issue, if it was the case it would have already eliminated every disease's, and all of us already tried that in the past and it doesn't work.
and you can keep your stupid studies for yourself, modern medicine is crap, they don't even understand 1/10 of how the body work, 60 years ago we didn't even had computer, modern medicine is very recent, nature and humans are here for far longer than that, we don't know better than it, modern pharmaceutical medicine is no better than it's beginning with "snake oil".
and if they knew anything about physiology they would have eradicated disease's, but instead of that they poison & kill people, humanity never had been so sick and unhealthy than today, 20% of child are obese, never had been so many cancer, diabete, heart disease, etc.. even babies start to born with cancer now. the body work as a whole, everything affect everything directly or by chain reaction, studying isolated part thinking you'll understand the root cause of health issue is highly stupid, specially when you ignore the lymphatic system. soon they'll tell us that disease are pharmaceutical deficiency, oh wait they already do that.
the main problem of people here is they think accutane cause special/"magic" problems, but no, you don't need to take accutane to have those health issue, specially in the long term, and some rare people have (very) strong enough body to not have too much problems with accutane. The root cause of every health issue are the same, always.
first it doesn't last 4 month, it last 6-8. and i already answered this question many times here, you can find it by yourself in every posts i made.
8 months??????? what planet are you on? cmon now... if you cant get even this fact straight, i cant help you.
From the American academy of dermatology:
Will isotretinoin cure me?
About 85% of patients see their skin permanently clear after one course of treatment. A course of treatment generally lasts about 4 to 5 months.
The recommandations for dosage and duration of treatment haven changed over time. I took accutane 14 years ago and it was strongly recommended to reach a cumulative dose of 120mg/kg. Most people did not reach this withinn 4 months and took it longer or started a second course.
The time of taking suplements has passed. If suplements would help, this forum would be closed time ago.
Then youre pretty much saying theres no help. What else is there? If a supp or natural chemical cant help then what are you waiting for? Another drug?
Noone is going to spend millions of dollars on research for us unless there is a patentable drug at the end of the tunnel. Do you think at the end of the research they find "hey, regular massages cure accutane poisoning!" or "regular exercise does too" or "crystal therapy helps accutaners!"
No. Those things wont be researched. And they don't help specific accutane poisoning, only general health a bit, I've tried them.
I have already found some supplements to help, which is why I will continue along this path.
If supplements dont work, then nothing will. Theres nothing else. And I'm not taking another drug. And if a drug DOES find to be accutane healing, there will certainly be an equivelent in nature or supplemental form.
and you can keep your stupid studies for yourself, modern medicine is crap, they don't even understand 1/10 of how the body work, 60 years ago we didn't even had computer, modern medicine is very recent, nature and humans are here for far longer than that, we don't know better than it, modern pharmaceutical medicine is no better than it's beginning with "snake oil".
and if they knew anything about physiology they would have eradicated disease's, but instead of that they poison & kill people, humanity never had been so sick and unhealthy than today, 20% of child are obese, never had been so many cancer, diabete, heart disease, etc.. even babies start to born with cancer now. the body work as a whole, studying isolated part thinking you'll understand the root cause of health issue is highly stupid, specially when you ignore the lymphatic system. soon they'll tell us that disease are pharmaceutical deficiency, oh wait they already do that.
Life expectancy in western societies has never been higher than today. This is also because of the access to a modern healthcare system. I don`t think, that your exaggerations and simplifications are very helpful in the discussion anonyy.
I think you are very wrong here. Unless you can tell me with 100% certainty, how accutane continues to work 10 years later, you cant rule anything out. Good luck, because even Roche isnt telling. Thats also why you cant rule out an "unknown" metabolite still being in your body somewhere with 100% certainty.
I could be wrong but I nobody has found nothing that helps after years discussing it. This forum is full of people speculating about the benefits of all kind of suplements. I have checked in other forums that the older you get the more dramatic the isotreine side effects are because of the natural aging effects. We can continue the next years acting as guinea pigs with no evidence or we can work together to spread the message.