Acne.org Products
ok, taurine--->trashed
sam-e, methionine--->trashed
(every supplement invented by humans) page of page of bullshit-----> trashed
new big idea is copper...none of us have copper deficiency
next week, next idea
I live In Switzerland, (roche country, roche develops isotretinoin)I went to famous university hospitals in my country , made thousands kilometers, speak with best doctors , explained the damage to isotretinoin , no one knows what the hell to do , just say shit boys
I did read this thread to 10 doctors , do not take it seriously , it would be enough to one who wants to investigate, only one that wants to take us seriously
Ruvik - I think it would take more than one or two patients going to a doctor saying there is a problem. If somehow we could collaborate getting enough accutane victims to the right doctor, in person, that could be a step toward getting attention toward cure research
3 hours ago, Ruvik said:ok, taurine---> trashed
sam-e, methionine--->trashed
(every supplement invented by humans) page of page of bullshit-----> trashednew big idea is copper...none of us have copper deficiency
next week, next idea
I live In Switzerland, (roche country, roche develops isotretinoin )I went to famous university hospitals in my country , made thousands kilometers, speak with best doctors , explained the damage to isotretinoin , no one knows what the hell to do , just say shit boys
I did read this thread to 10 doctors , do not take it seriously , it would be enough to one who wants to investigate, only one that wants to take us seriously
you and Marlin15 need to get a room... so you both can bitch and whine to each other all day.
Go copy and paste more shit and pawn yourself off as a "researcher". The command + c/v keys on your computer must be taking a beating. Honestly, whats next week? I can't wait to find out what you will stumble across as the new breakthrough. I used to put up with this shit but the more I see this going nowhere and the more i see people thinking they are close bc they were able to find some shitty research on google scholar, the more i get pissed.
Go copy and paste more shit and pawn yourself off as a "researcher". The command + c/v keys on your computer must be taking a beating. Honestly, whats next week? I can't wait to find out what you will stumble across as the new breakthrough. I used to put up with this shit but the more I see this going nowhere and the more i see people thinking they are close bc they were able to find some shitty research on google scholar, the more i get pissed.
10 minutes ago, marlin15 said:Go copy and paste more shit and pawn yourself off as a "researcher". The command + c/v keys on your computer must be taking a beating. Honestly, whats next week? I can't wait to find out what you will stumble across as the new breakthrough. I used to put up with this shit but the more I see this going nowhere and the more i see people thinking they are close bc they were able to find some shitty research on google scholar, the more i get pissed.
Nobody is making you come on this thread. Simple solution for you - just stop reading it.
10 minutes ago, marlin15 said:Go copy and paste more shit and pawn yourself off as a "researcher". The command + c/v keys on your computer must be taking a beating. Honestly, whats next week? I can't wait to find out what you will stumble across as the new breakthrough. I used to put up with this shit but the more I see this going nowhere and the more i see people thinking they are close bc they were able to find some shitty research on google scholar, the more i get pissed.
Nobody is making you come on this thread. Simple solution for you - just stop reading it.
This is how research is done. A lot of it leads to dead ends. But, I don't see the point of working against each other. I know a lot of chemistry students and medical professionals that use pub med research files...but even so, one should discern between each study. Nothing in life is a for sure thing. Also, yes popular belief in the medical industry is that things such as CSF isn't real etc.etc.
Maybe we were deficient in something beforehand. maybe it was genetics. either way, we are looking at every possiblity with what is made available to us. so please don't interrupt the smart ppl we do have doing work.
really feelin the love today. should we all quit close the forum and say we're f@cked and thats that? well I say F that! I dont care if its a new idea every week or every day.
What? Over? Did you say "over"? Nothing is over until we decide it is! Was it over when the Germans bombed Pearl Harbor? Hell no!
-John Belushi, animal house.
No Macleod, this isn't how research is done. You don't make definitive statements (e.g.: "we all have persistently upregulated FOXO1" or "we all have excess intracellular copper," or even "we all have persistent gene dysregulation") without a way to test the hypothesis. None of us has access to proper equipment or the knowledge to perform the tests required for validation of these types of statements.
This amateur "hypothesis spamming" has been going on for over 20 years across several forums and it has led to absolutely nothing.
It is a shame that all of this mental energy isn't going toward contacting researchers, opening dialogue with doctors who may not be so dismissive, or increasing media exposure regarding what has happened to us. People still log on and discuss side effects ad-nauseam without bothering to report their side effects. People still post saying they've figured it all out and that a treatment is right around the corner without having an understanding of core concepts of biology.
Discussing the flavor of the month fabricated pathology and corresponding cure is always more appealing than doing the real footwork.
I don't want to die stuck this way while the next generation of Accutane sufferers continues to play the same games, but I think that is how this will end.
5 minutes ago, Dubya_B said:No Macleod, this isn't how research is done. You don't make definitive statements (e.g.: "we all have persistently upregulated FOXO1" or "we all have excess intracellular copper," or even "we all have persistent gene dysregulation") without a way to test the hypothesis. None of us has access to proper equipment or the knowledge to perform the tests required for validation of these types of statements.
This amateur "hypothesis spamming" has been going on for over 20 years across several forums and it has led to absolutely nothing.
It is a shame that all of this mental energy isn't going toward contacting researchers, opening dialogue with doctors who may not be so dismissive, or increasing media exposure regarding what has happened to us. People still log on and discuss side effects ad-nauseam without bothering to report their side effects. People still post saying they've figured it all out and that a treatment is right around the corner without having an understanding of core concepts of biology.
Discussing the flavor of the month fabricated pathology and corresponding cure is always more appealing than doing the real footwork.I don't want to die stuck this way while the next generation of Accutane sufferers continues to play the same games, but I think that is how this will end.
I hear what your saying, But this forum also doesn't have to be a black hole. your comments are very dark and serious, which I understand. I feel like my life minus accutane would be different. But damn man, lighten up just a bit.
Well, I don't think anyone here is saying anything is definitive. I still stand by my previous statement that this is in essence the basis of scientific research. I think I'm adept enough to know how some of the world works. I watch Martin Shkreli dick around all day on Pub Med research while doing his live stream chemistry lessons, because while he is a CEO pharma exec himself, he is a chemistry novice. Youtube his live streams if you don't believe me. He researches diseases on pub med research and clinical trials.gov to find out the latest information on diseases so that he can purchase stock interest in a company, or rather chemically patent some of the ingredients to make new medicines. Maybe that will give everyone here some inspiration...If he is doing it...
I personally think what has transpiredwas a form of genetric transcription, however if it weren't for the days after copious amounts of ethanol consumption where mental clarity improved, anxiety disappearing, and erections going to 100%, I would of thought we were permanently fucked. But, there is hope. I think its chemical and neurological, but, we just need more time.
36 minutes ago, Modeaa said:to summerize what i think from all of my readings so far:
I THINK that the problem is- lipotoxicity and lipogenesis(capability) problems.
in short- something like a fatty liver just also distrubuted throughout the body,
this lipid stuf is involved in the mechanisem of the drug action(the drug itself is a lipid ).
enter to the isotretinoin and foxo study and press control F and write- ''lip'' and scroll.
as i got it this paper can also be called- ''isotretinoin and it's effect on lipids metabolism''
lipogenesis involves androgens.
i think that the autor missed or reversed it by saying that foxo is the cuase of the inhabition of lipogenesis.
what i think heppen is that accutne induced lipotoxicity causes insulin insensetivity and foxo induction which impaire lipogenesis (reasonable because of lipotoxicity presense) (it's not foxo alone which impaire lipogenesis it's the whole above cascade )
i think that this lipotoxicity problem is inability to get ridd off fatty acids stored in fat cells or in non fat cells(which can happen due to the lipotoxicity, no more storage place in fat cells) this non fat storage can cause cell death or dysfunction also. maybe this non fat storage from lipotoxixicy is what rises stones formation.
what needs to happen is that somehow the unwanted fatty acids will get to the liver(which itself can be toxicated by them so how can it deal with the rest) and be excreted from the body.
l
Ok guys ... turn your heads, and close your eyes... more control C/V!!!!!!!!!!! (sorry, i didnt even have any hi-tech equipment needed to do the testing myself! What a world we live in.)
Modeaa
4.3. Copper and NAFLD The earlier studies of copper misbalance were focused mostly on the effects of copper deficiency and resulting dyslipidemia on cardiovascular disease. The liver, however, is the central organ of copper homeostasis and, as discussed above, it is greatly affected in WD. It may also be functionally affected in copper deficiency (88). Caloric excess associated with the modern Western diet is implicated in NAFLD, however caloric excess does not compensate for copper deficiency. Furthermore, copper deficiency can still be experienced by the liver, even when serum copper levels are maintained or increased due to factors such as dietary cholesterol. Although numerous studies clearly link copper deficiency to altered lipid metabolism in animal models (12, 22, 24, 89-92) and human volunteers (29), only recently has low dietary copper been implicated in liver dyslipidemia pathology, including non-alcoholic fatty-liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH). In a recent groundbreaking study, hepatic copper content in biopsy specimens was inversely correlated with the severity of fatty liver disease, and copper deficiency in a rodent model was found sufficient to induce NAFLD and metabolic syndrome (12). Hepatic iron accumulation, a known consequence of copper deficiency, is also observed in NAFLD (93). Iron accumulation likely results from the loss of holoceruloplasmin, a copper-dependent ferroxidase instrumental in iron distribution (94). This, in turn, results in lower levels of ferroportin in copper deficient rats; coincidentally, NAFLD patients show less ferroportin expression than controls (93). Copper supplementation has been suggested as a therapy for NAFLD based on study in which a diet-induced (high carbohydrate fat-free diet) NAFLD in rats was improved by treatment with a Cu(I)-nicotinate complex (95).
2 minutes ago, tryingtohelp2014 said:Ok guys ... turn your heads, and close your eyes... more control C/V!!!!!!!!!!! (sorry, i didnt even have any hi-tech equipment needed to do the testing myself! What a world we live in.)
Modeaa
4.3. Copper and NAFLD The earlier studies of copper misbalance were focused mostly on the effects of copper deficiency and resulting dyslipidemia on cardiovascular disease. The liver, however, is the central organ of copper homeostasis and, as discussed above, it is greatly affected in WD. It may also be functionally affected in copper deficiency (88). Caloric excess associated with the modern Western diet is implicated in NAFLD, however caloric excess does not compensate for copper deficiency. Furthermore, copper deficiency can still be experienced by the liver, even when serum copper levels are maintained or increased due to factors such as dietary cholesterol. Although numerous studies clearly link copper deficiency to altered lipid metabolism in animal models (12, 22, 24, 89-92) and human volunteers (29), only recently has low dietary copper been implicated in liver dyslipidemia pathology, including non-alcoholic fatty-liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH). In a recent groundbreaking study, hepatic copper content in biopsy specimens was inversely correlated with the severity of fatty liver disease, and copper deficiency in a rodent model was found sufficient to induce NAFLD and metabolic syndrome (12). Hepatic iron accumulation, a known consequence of copper deficiency, is also observed in NAFLD (93). Iron accumulation likely results from the loss of holoceruloplasmin, a copper-dependent ferroxidase instrumental in iron distribution (94). This, in turn, results in lower levels of ferroportin in copper deficient rats; coincidentally, NAFLD patients show less ferroportin expression than controls (93). Copper supplementation has been suggested as a therapy for NAFLD based on study in which a diet-induced (high carbohydrate fat-free diet) NAFLD in rats was improved by treatment with a Cu(I)-nicotinate complex (95).
I just downed 8mgs of copper and now I am going to drink a couple high lifes and play some guitar and watch music videos. I will let you know how it goes.
10 hours ago, Ruvik said:ok, taurine--->trashed
sam-e, methionine--->trashed
(every supplement invented by humans) page of page of bullshit-----> trashednew big idea is copper...none of us have copper deficiency
next week, next idea
I live In Switzerland, (roche country, roche develops isotretinoin)I went to famous university hospitals in my country , made thousands kilometers, speak with best doctors , explained the damage to isotretinoin , no one knows what the hell to do , just say shit boys
I did read this thread to 10 doctors , do not take it seriously , it would be enough to one who wants to investigate, only one that wants to take us seriously
Switzerland huh, do me a favour - If you see anyone from Roche when out and about please punch them really hard in the face and say "all the roaccutane survivors say hello" and walk off!!!
and we do have a way to test out hypotheses. my wish for this board, would be to really start ruling out things people try to come up with. grouping people by symptoms would be even better.
for example ...everyone experiencing say....
a.) Joint pain/inflammation
b.) lethargy
c.) dry skin
please get a simple RBC copper & ceruloplasmin test. If we could get 10 people to do this, and post results. Plus you could include the# of years you are post tane. and we could plot it, to see if anything gets better or worse over time.
6 hours ago, tryingtohelp2014 said:and we do have a way to test out hypotheses. my wish for this board, would be to really start ruling out things people try to come up with. grouping people by symptoms would be even better.
for example ...everyone experiencing say....
a.) Joint pain/inflammation
b.) lethargy
c.) dry skinplease get a simple RBC copper & ceruloplasmin test. If we could get 10 people to do this, and post results. Plus you could include the# of years you are post tane. and we could plot it, to see if anything gets better or worse over time.
Ill get my copper and zinc done and post the results.
My test results:
Copper (Plasma) 10.7 Range 11-22
Ceruloplasm 0.14 Range 0.15-0.60
Test were taken about 2 weeks ago. I'm taking a 24 hour urine copper test tomorrow. I'll post the results Asap.
Also just an update. So I visited my functional medicene doctor lastThursday to get retested for Sibo andtheSIBOis completely treated. My constipation issues gone and I'm able to handlefoodslike dairy again. I'm staying on a low fodmap diet for the next couple of months to keep the Sibo from coming back and am also taking a very lose dose of Clarithromycin as a
prokinetik agent.
Now based on the above copper results my doctor thinks I have a bit of a copper overload issue. So I'm taking 30mg of zinc 3 times a day with food. Taking lipoic acid and Sodium Ascorbate (vitamin C)to help with the copper elimination. Also taking iberogast with food to help with digestion and liver. It's only been 5 days since I started with the copper elimination and I already feel ALOT better. These are the symptoms that have improved:
Brain Fog. Speech and thinking are alot better. I'm not stumbling over my words and I'm able to explain things in a clearer way.
Energy Levels. Alot more stable. Have energy to go on long walks or short runs. Not crashing as much through the day. Also waking up feeling more refreshed.
Vision is clearer. ALOT less "snowy". I feel as if I'm seeing things differently for the first time in years. Not 100% cured but this may be my biggest improvement.
Hearing - I'm able to hear music clearer. I candifferentiation what sound is coming out of what headphone.
Mood. The last 3 days have probably been the best I've felt since I can remember. Also feeling a lot less emotionally numb. I'm getting my emotions back.
Body feels less achy. I don't feel 90 years old getting out of bed.
Relaxed. I feel alot more relaxed and more chilled out
Now none of these symptoms have been completely cured but the improvements have been significant. I'm feeling the best I have in years. It's only been 5 days and I'm trying not to get to excited as I've been let down again and again in the past but it's hard not to when I'm feeling this way.
Now I've been dealing with some detox symptoms like slight headaches, waking up at night, and racing mind (few times)but nothing out of the ordinary when detoxing copper . Actually the first day I hadmy most intense copper "dump". After lunch I started to feel super energetic like I was on some sort of drug also my mind felt like it was going at 100 mph. It's was a pretty cool feeling lol. Lasted for an hour or two. I also woke up that same night with a metallic feeling in my mouth.This is a pretty cool article in regards to cooper toxicity and detoxing. Almost explains our symptoms to a T.
*** Edit -2nd one is also pretty informative. Check it out.
[Edited link out]
[Edited link out]
I'd say between eliminating the SIBO and now working on the copper issue the improvements I've mad have been by far the most significant since starting my road to recovery. I'll keep you guys updated as I progress.
thanks macleod.... and bobby digital... if thats an RBC copper test (edit: its plasma, wrong test)... you are NOT copper toxic. trust me, about 10 years ago, i took a lot of zinc, it makes you worse over time. you are probsably mobilizing the last bit of copper you have, making you feel better. 90mg of zinc per day is fucking nuts. and taking high dose vitamin C will make your ceruloplasmin drop even further. i wouldt go back to that doctor...ever.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4283048/
The principal CYP450 family responsible for RA degradationin vivois CYP26. There are three known isoforms encoded by separate genes: CYP26A1, CYP26B1 and CYP26C1. The CYP26s sequentially oxidize RA to more polar metabolites such as 4-hydroxy-RA and 4-oxo-RA using oxygen and nicotinamide adenine dinucleotide phosphate reduced (NADPH) co-factors (McCaffery and Simons 2007;
so what happens when you "chronically" take a substance, that disregulates the very CYP26 and NADPH cofactors needed to oxidize it? dont say this cant be done either... theyve even developed drugs called RAMBAs, that shut off CYP26..to give RA that extra toxic boost.
excellent,excellent article explaining the misinformation regarding "copper toxicity" interestingly, he also mentionsthese same p450 and NADPH cofactors. histamine testing.
[removed]
Highlighted a few tidbits:
Morley Robbins:And in part, its complicated by the fact that people have been brainwashed over the last 30 years to think of copper as being a bad guy and weve got to get rid of it, its toxic and get it out of your body, its all witchcraft, its designed to drive copper deficiency, which is really whats at the core of a lot of peoples problem.
Morley Robbins:But the key here is and this is where it gets really kind of wild and lily if ceruloplasm is so important, what do we need to in order to have healthy ceruloplasm? Well, the first thing that you got to have ceruloplasm are made in the liver is good, healthy sources of retinol, which is the animal-based form of vitamin A.
You think, Wow! Okay, thats no big deal. Well, actually, it is a big deal because retinols antagonist in the body is calcitriol, otherwise known as vitamin D (when in fact, its not a vitamin D. Its actually a hormone) and people are drinking and swallowing vitamin D like its candy and they have no idea that when theyre doing that, when theyre taking that 1000, 3000, 5000 I was talking to a client the other day who took 50,000 units a day of vitamin D.
Morley Robbins:Well, it gets stored just about everywhere. Whats important, lets get into a little bit of metabolic esoterica. Im sure people have heard of the mitochondria. The mitochondria, its the energy of the cell. Well, oxygen is a good thing, but oxygen can go rogue. Oxygen causes rust. So inside the cell, it causes reduce oxidation species or we go to these free radicals. Im sure youve heard of them. Im sure your clients have heard of them.
Well, the key is how does that happen? Whats taking place? Well, oxygen becomes whats called superoxide because of a non-functioning enzyme called NADPH oxidase. It turns out, its copper dependent.
So if copper is not present, the oxygen will become superoxide. And then you say, Oh, okay. Alright, so Ive got some superoxide. Not to worry, Ill just use some superoxide dismutase (SOD). Well, theres there types of SOD. Theres SOD 1, which requires copper and zinc. That plays around inside the cell. Theres SOD 2 is manganese-dependent and it plays inside the mitochondria. And then SOD 3 is extracellular and that also is copper dependent.
Whats really key is to understand that the cytochrome p450 family of enzymes, which is what converts the steroid hormones from one spectrum to another, well, theyre copper dependent. And if you dont have bioavailable copper, your hormones dont work. They cant morph from one to the other.
Testing low in hormones or nutrients, such as copper, does not necessarily mean the body needs more of them. If you consider that Retinoic Acid, as a chemotherapeutic agent, leads to large scale cell cycle arrest and apoptosis, the cells of the body (since there are less of them) would not need as much of these hormones or nutrients to function.
We need doctors/researchers/media. The resources to get the right treatment.
The guy who started this thread was in the BBC accutane documentary. More stuff like that needs to happen.
2 hours ago, Accustained said:Testing low in hormones or nutrients, such as copper, does not necessarily mean the body needs more of them. If you consider that Retinoic Acid, as a chemotherapeutic agent, leads to large scale cell cycle arrest and apoptosis, the cells of the body (since there are less of them) would not need as much of these hormones or nutrients to function.
We need doctors/researchers/media.
The guy who started this thread was in the BBC accutane documentary. More stuff like that needs to happen.
Youre glossing right over of what makes retinoic acid a chemotherapy drug!? PLEASE PLEASE.....you tell me what causes the cell cycle arrest?????
here, ill save you the homework.....
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2634674/
If you test low in RBC copper, you need copper... no if ands or buts. theres not some magical inverse toxic meaning here. YOU ARE DEFICIENT!!!!!!
im not going to control c/V you to death with medical journals from the same doctors and researchers you want to ask...confirming this either. its already been done. you think the BBC is going to help you? btw my calls and emails to the university and drug company grant funded "researchers" have gone unanswered. what are we to do????!!!!!!
The only meaningful progress thats been made in the last 20 years has been from student thesis papers. imagine that.
LOL this is incredible! Im taking a break from this. btw.... I find it really funny these people with 0 posts start showing up when something gets interesting.
I posted this, but i dont think half of the people read links.
http://www.nytimes.com/2006/11/12/magazine/12wwln_diagnosis.html
First she looked into vitamin A. She knew it could be toxic at high doses, and he was taking more than 10 times the recommended amount. A quick search, however, turned up nothing. What about zinc? She didnt know much about that mineral, but he was taking 15 times the usual dose. She did another search, and bingo! A half-dozen reports appeared on the screen describing cases in which high zinc intake had caused neutropenia, and sometimes anemia. She read on, fascinated. Zinc itself didnt cause the problem; it was that zinc and copper were absorbed by the body through the same cellular doorway. If you consumed too much zinc, you absorbed too little copper. And that mineral was essential to making blood and tissue. Maybe he had a copper deficiency after all, she thought triumphantly.
3. Resolution
She directed the patient to stop taking all his vitamins and sent off blood for a copper-level test. Even before the results came back, the effect was visible. Within days, his white-cell count was in the normal range. He was sent home with a prescription for copper and told to take it for the next six months. When the copper test finally came back, it confirmed the deficiency. Over the next couple of months, the anemia resolved too, and the wound finally healed.