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Who did you think I was calling the contrarian? Of course it's me in this instance. I've no interest in discussing this here, and am happy to drop it.
Take a look at the line the I quoted: that is very clear. Anyway, I don't have a big problem with you Joe only a small one. I think you just have to be a little mindful of what you say to people who are really struggling. I actually found all the talk about suicide and getting the job done right the first time a little distasteful.
The difference with natural vitamin A megadosing is the body is more likely to clear it out over time.
By contrast accutane does cause known permanent damage such as shrinking DHT receptors.
Accutane can't be cleared in a normal way. It's not even clear that it actually stays in the body. It may just damage the body permanently and then leave the system. Cleanses therefore may be useless. They don't ever seem to work.
This is why a cure, and by cure I mean restoring the body to what it would have been without accutane, is probably impossible. Although a solution may be possible.
Lukez, I appreciate you response buddy, but all of what you said is highly speculatory, and therefore neither here nor there. This problem is much more complex than just a matter of storage. There are countless systems that have been jilted and this is why we need research. Vitamin A, in even small continous doses is life threatening (dig up some of my old posts), and very harmful to the liver. There is no such thing as specific DHT receptors. Did you know that even estrogen receptors can accept testosterone ?
Indigo,
See Dr. Kevin Pezzi for a doctor's report on the sexual side effects of accutane.
That is not a recommendation I would be making. Dr. Pezzi actually advocates the use of Finasteride for Isotretinoin afflictees: that is the last thing they need - more endocrine disruption.
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That is, it affected DHT negatively.
As for vitamin A, natural vitamin A toxicity supposedly clears up by stopping treatment. That's the standard approach. Accutane is not the same as far as I can see. Is there a forum where people megadosed accidently on natural vitamin A and got the same symptoms? I'd bet the fact accutane is synthetic makes it harder on the body.
All we have is speculation and empirical results of what works. I don't think theory is going to get us too far. You're welcome to try any approach you want though.
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That is, it affected DHT negatively.
As for vitamin A, natural vitamin A toxicity supposedly clears up by stopping treatment. That's the standard approach. Accutane is not the same as far as I can see. Is there a forum where people megadosed accidently on natural vitamin A and got the same symptoms? I'd bet the fact accutane is synthetic makes it harder on the body.
All we have is speculation and empirical results of what works. I don't think theory is going to get us too far. You're welcome to try any approach you want though.
Yes, I would put a big emphasis on the word "supposedly" to begin with. Do you think for a moment that the irreversible liver damage that can be potentiated by low dose Vitamin A will resolve once you drop the supplementation ? Accutane is a metabolite of vitamin A.
DHT (dihydrotestosterone) is the anabolic (muscle building) metabolite of testosterone. Accutane's negative effects on DHT could account for the decline in energy, sports performance, and other body systems as well.
Accutane blocks formation of dihydrotestosterone and does not affect other hormones. R Palatsi, A Ruokonen, A Oikarinen. Isotretinoin, tetracycline and circulating hormones in acne. Acta Dermato - Venereologica 77: 5 (SEP 1997):394-396.
Isotretinoin is a known type 1 5-alpha reductase inhibitor - yes, and with all due respect - so what ? It does much more than that, and the medical community is learning more about this all the time. People have had their testosterone levels trashed by this drug, as have many people over at Propeciahelp.com. The hair loss drug was only supposed to inhibit DHT, and actually lift testosterone as a consequence; but people now have excellent DHT (serum) levels and testosterone levels of 70+ year old men.
People have messed up cortisol level, deflated 3 adiol-g levels, high estrogen and prolactin. Forget about the ideals you read about in those articles, because real life is much more insidious.
Then it is nonsensical to accuse me of "Sir, you are the contrarian" when I have already stated as much.
As for suicide, no one here is genuinely suicidal, it appears. But a research phase forces a cooling off period, which usually is enough to change one's mind. Therefore, I am arguably both saving lives and preventing half-cocked (e.g. pill popping) attempts that would lead to permanent damage, thereby generating further misery and depression.
This is particularly true in the case of Accutane, which can induce spontaneous whimsical suicidal ideation.
The knowledge that one has the power to effectively ends one's life at will can be a great source of psychological strength in adversity, and enable one to value life's remaining joys. The power to choose enables one to own the choice.
The fundamental problem with building a social stigma around suicide is that society cannot prevent suicide; only the suicidal individual can. And, since those individual are often rejected by society, they undergo value inversion, adopting values opposite to society's. Thus stigmatization increases the attraction.
Better to discuss it openly for what it is - a usually temporary urge driven by ephemeral biological causes, and one that would later be regretted.
Then it is nonsensical to accuse me of "Sir, you are the contrarian" when I have already stated as much.
You have no idea ! You called me contrarian intially, and I reponded by saying that you have, infact, miused that word because it is clear that you (Joesph) are contrarian: Saying obviously outlandish and counter hegemonic things like: smoking doesn't really cause cancer.
When I see someone who is obviously intelligent, and who has likely devoted hundreds of man hours to a problem, hold to a contrarian opinion, my reaction is curiosity.
This is where you called me contrarian; I hope it is now clear.
No, you misread it. I am describing my reaction to statements I find outlandish, as opposed to yours.
Nice try. You had just quoted me before you wrote that.
You are just here for attention; you claim to have the answers when the best doctors in the world are struggling to understand this. I intially responded to your post because you were obviously laying it on rather thick.
This incredibly complex problem needs to be studied at the molecular level by scientists. No lay person can uncover the root cause of this problem. I'm not disputing that some level of relief can be obtained from a lay person, but no one is going to get their energy back to what it intially was without expert intervention, if they have been dealing with this for years. Of course, if you were not that badly affected, you may recover naturally in time. I used to be able to run 8-10kms very easily and now I can't run more than 1km.
no one is going to get their energy back to what it intially was without expert intervention, if they have been dealing with this for years.
That's just false. I have.
What's far more likely is that laypeople will find a solution, and then scientists will discover the mechanism that makes it work.
Modestm is verging on trolling.
Affected people will be more likely to find the solution than scientists. Scientists are the ones who invented and sanctioned the use of accutane.
There is already overlap in a good number of reports on what buffers the worst effects of accutane.
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My concern with the many theories tossed around is that they don't really matter compared to common patterns found in what helps people.
Modestm is verging on trolling.
Affected people will be more likely to find the solution than scientists. Scientists are the ones who invented and sanctioned the use of accutane.
LOL, I am eagerly awaiting your findings. You were insightful enough to argue that it was essentially a matter of DHT inhibition. I'm assuming you will make a couple more trips to the health food store and you will have this cracked.
I still haven't read ONE success story where after years off being off the drug, that the side effects stopped completely. Any success I've read seems to be those who suffer from very minor side effects that eventually go within months usually of being off the drug, maybe a year, or maybe even two years. But I haven't read things really turning around after that.
http://www.wilentzpe...y/accutane.html .
This is the crux of the problem, and, help is needed to decipher what has gone wrong. Remember, that some of the worst affected people have been suffering since the 80's.
You were insightful enough to argue that it was essentially a matter of DHT inhibition
I didn't argue that it was 'essentially' a matter of any one thing.
I oppose the reductionist thinking and the health supplement approach. Both have not worked. I couldn't be any clearer on those points.
The common patterns that have worked for some people are:
1. food based, and
2. modulating consciousness for health.
Thanks Modestm. Your posts are very insightful! Its good to hear that someone else is looking at these issues in a more scientific perspective. I feel your guy's pain about all the side-effects. I am lucky enough to have recovered from all the nasty neurological side-effects: emotional anhedonia, extreme fatigue, uncontrollable cycling of depression/anxiety, brain fog and cognitive issues. I still have near zero libido and some sexual problems.
Before any of you consider killing yourselves... there are 3 possible solutions that have led to recovery or partial resolution in persistent side-effects of propecia and accutane users
1. Long periods of water fasting may help the body shut down and restart some of the genes that have been silenced/down-regulated. Multiple accutane side-effect sufferers have experienced partial to near full resolution of persistent side effects after long periods of water fasting (Usually 30 days)
2. Dr. Kevin Pezzi, MD and a couple of others have recovered from their persistent side-effects using the hair loss drugs to re-sensitize their androgen receptors (The Science of Sex). However, I would only use this as a last resort and in the most severe cases, as it can also lead to a worsening of symptoms.
3. Certain drugs that regulate GABA such as GHB/Xyrem may help restore receptor balance. Several scientists who are studying the accutane/propecia problem think that the androgen resistance causes problems with GABA control---leading to many of the neurological side effects.
Make sure to try all of these before deciding to kill yourself. I would recommend trying #1, #3 then #2.
Hey Welt, I have always liked your posts and your story about dealing with acne because of the commonalities with my own story. I hope you can stir up a bit of trouble on our behalf when you become a doctor. We are effectivley clutching at straws at the moment, and it just has to get better.
On 12/18/2011 at 1:15 PM, Lukez said:I oppose the reductionist thinking and the health supplement approach. Both have not worked. I couldn't be any clearer on those points.
The common patterns that have worked for some people are:
1. food based, and
2. modulating consciousness for health.
I'm hoping that for some symptom sets, after controlling for food, targeted supplementation will become effective at reversing long term damage, eventually permitting gradual diet expansion.
A 30 day water fast. I can actually see that working, for multiple reasons. But it's a terrible price to pay. Do you have more on this? I'm fascinated.
Here is one good fasting resource I found: [Edited link out]
Fasting is very liver-intensive. Can Accutane sufferers even do it safely over longer periods? What kind of danger signs should we look out for?
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some quotes:
Severe toxic contamination has been shown to be significantly helped with fasting. Clinical trials have found that people poisoned with PCB experienced "dramatic" relief after 7-10 day fasts.
Other diseases that have responded to fasting are: psychosomatic disease, neurogenic bladder, psoriasis, eczema, thrombophlebitis, varicose ulcers, fibromyalgia, neurocirculatory disease, irritable bowel syndrome, inflammatory bowel disease, bronchial asthma, lumbago, depression, neurosis, schizophrenia, duodenal ulcers, uterine fibroids, intestinal parasites, gout, allergies, hay fever, hives, multiple sclerosis, and insomnia.
Those Who Should Fast Under Health Care Supervision
People with a high toxic contamination level of DDT. DDT is stored by the body in a highly concentrated form in fat tissue. Fasting can release huge levels of DDT into the bloodstream as the fat stores are released. This can be quite dangerous.
So for a full soltion on this, we are relying on science? Scientists have had 29 years to look into this. I read the "Babies, Blemishes & The FDA" the other day, and there's been contreversy basically since the day Accutane launched, so I can't understand why nothing significant has been found in research yet, or any real belief there will be. Are scientists actually researching this drug at the moment? If anything significant is found, will it even be put foeard to the public anyway? And then a treatment for it? More drugs?
Complete resolvement (of anything) is very hard to come across in life, but science is our best bet, given the dismal results thus far. If you have lost 70% of your total testosterone value and you aren't even 30 yet (and it has been that way for years) thanks to an acne drug low tier strategies such as: controlling food, targeted supplementation, restrictions on sex (for fear of further hormonal disequilibrium) and my personal favorite: modulating consciousness for health are of very little use.
The boys (a handful) at Propeciahelp have managed to get scientists actively researching this problem. There was actually a full blown conference on the matter in Italy recently convened by doctors looking into this. There have also been radio and tv interviews and articles in Mens Health magazine. The first results from molecular studies will be out next year. Do I think that they have managed to lay bear precisely what has happened at this stage - of course not. This initial result will obviously spur on further study, and they intend to see this through to the end. There aren't any other options.