2 hours ago, lozagon said:

For all of you who have dry skin even after stopping accutain (even years later) I will give you my 2 cents about what worked for me.
I used accutainfor 6 months. 17 years later my skin was very dry all the time, to the point that i was getting older much faster than i was supposed to since my skin produced no oil whatsoever. I also got eye dryness. Also my skin has been extremely sensitive to anything i put on it, (not even cetaphil moisturizer) because it leaves my skin red as if i was sick...the only thing i can put is zink to protect my skin and i spray vegetable glycerin in my skin. However what worked for me to kinda jump start some of my sebaceous glands i discovered by accident when i traveled to finland and got into a sauna. (187 degrees fahrenheit) I went for 3 days and 3 days later i started noticing my forehead being shiny aswell as my nose and chin. The rest of my face seem more hydrated and i actually got several acne break outs on my forehead. This is after not getting any acne for years. I said halleluya my freeking sebaceous glands are starting to work again. Ofcourse i do not wan't it to return to the way it was before accutain which was way too oily, but now my skin is not as dry. I guess if it gets dryer in the winter i can go to the sauna more often. by the way i am 44 years old and you can manage any new breakouts with lycopads 10% glycol acid from amazon which are very good at preventing new breakouts.

Hope this helps some of you who are desperate to get your oil back.

Can second this. Although I made a two week trip to Thailand during the wet season where it was ridiculously humid. Would sweat all during the day. I was still getting small pimples on my face since finishing accutane in 2012 and this trip was last year. So sweated a tonne and after that trip I haven't had more than two pimples on my face. Perhaps it was just good timing but I felt at the time I was sweating something out. I have saunas up to 3 times a week now and have done for over a year.

4 hours ago, cnb30 said:

I still can't believe I went off like that yesterday. I feel like I need to be saved from my own brain.

I can TOTALLY relate. Lately, my mental state has gotton cyclical in nature. For example, yesterday I felt incredibly clear-headed. I was socializing at every opportunity. Today, those close to me are asking why I am so grumpy because I cannot even stand to be talked to. The fog/emotional blunting is simply overwhelming. My good days keep me going because they let me know my brain is still CAPABLE of feeling (almost) normal. The goal is to start having more good than bad days. Many of those who recover say that the process is NOT linear. There will be set backs, and that's okay.

Edit: To clarify, I can relate to the concept of feeling powerless against my brain. I do NOT have violent fantasies and never have.

7 minutes ago, ACCUiTy_drANE said:

3 hours ago, cnb30 said:

I still can't believe I went off like that yesterday. I feel like I need to be saved from my own brain.

I can TOTALLY relate. Lately, my mental state has gotton cyclical in nature. For example, yesterday I felt incredibly clear-headed. I was socializing at every opportunity. Today, those close to me are asking why I am so grumpy because I cannot even stand to be talked to. The fog/emotional blunting is simply overwhelming. My good days keep me going because they let me know my brain is still CAPABLE of feeling (almost) normal. The goal is to start having more good than bad days. Many of those who recover say that the process is NOT linear. There will be set backs, and that's okay.

Lucky! I never feel even 25% normal 99% of the time.

On 8/30/2016 at 1:50 AM, Dubya_B said:

Na. Terroristic threats are pushing the envelope a bit much for the [removed] site and aren't welcome there either. It's a place to give hope to people who have lost hope in the general tone of this thread.

Macleod, why don't you join? The site as a whole might be geared toward promoting scientific research, but the Accutane forum is still a forum meant for all Accutane sufferers.

I'm gonna join shortly. Can't wait to post my detailed Accutane story.

On 8/27/2016 at 5:08 PM, Dubya_B said:

John, our side effects can absolutely be proven biologically by modern science. In fact, this could have been done with the level of biotechnology that existed ten years ago. The ultimate purpose of[removed] is to establish initiative and funding for scientific research into our seemingly permanent side effects, whether it be through crowd funding or by joining-up with organizations like the PFSF. The site was built because there is no hope if we continue as is.

Like I said, I wonder how hard it would be to create an actual non-profit organization, such as the Propecia foundation. [removed] is still just a web site, correct? I mean, so it doesn't have that ability at this time. Then we could see if we could crowd fund or get donations like the latter has done...Just thinking out loud, I'll leave more of this discussion for the excellent Lasting Sides forum you created.

On 8/29/2016 at 1:26 PM, Dubya_B said:

I'm certain Dr. Santmann is aware of our overlap in symptoms and the overlap in MOA of both drugs, but can't speak on his personal opinion. Dr, Santmann's hands are tied either way because his organization is receiving money from many people who don't understand or care about Accutane sufferers possibly having the same condition. Politics. Look at it from the viewpoint of a "post-Accutane Foundation" funding scientific studies and supporting medical and media outreach programs for ex-finasteride users without extremely solid evidence of a related syndrome.

Right, I completely understand he isn't our "friend" and that the only solution is to form our own initiative, like they have done.

As for mental problems I recommend to look into 5-htp. I take it for some time, and I think it starting to work. Nothing spectacular but it's like giving me back some sense of normality. I have a little bit more energy, not obssesing about my health so much... Like I said nothing spectacular but it's a good thing because I learned that pharmaceutical products that give you some awesome effect(can't deny that antibiotics and accutane have potential to really clear your face! Of course sometimes(in case of antibiotics almost always) temporaly) comes with not so "awesome" side effects(that are in opposition to clear face not so temporaly) so Im good with slowly regaining my health and myself.

I have been thinking more lately about fundraising research for those of us devastated by these side effects. Has anything been set up yet?! Let's jump in. I know this is a goal of [removed] and I applaud that. Like them, I am just tired of waiting. There are two-three ways we go do this.

Hey guys. Long time no talk.

Previously I made some headway with managing my IBS/IBD symptoms by eating a very controlled, specialized diet. I also took up smoking handrolled tobacco (manufactured cigarettes caused gut reaction within 24 hours). This helped with depression, mental acuity, pain management, and possibly gut symptoms. Or it might've exacerbated gut symptoms. I tried to quit multiple times but couldn't manage, so that's unknown.

Anyhow, this continued, with me adapting to an ever tightening set of parameters, until I was eating a three component starvation diet with fewer calories than a North Korean gets, was down to my lowest adult weight, and had undetectable levels of fat soluble vitamins (D, A, others?). Amazingly, I was still able to remain pseudo-productive thanks to insane regimen control.

I went to a top gut doctor in Chicago, had a colonoscopy and the standard tests, all of which showed nothing except the aforementioned malnutrition. The doctors refused to hear of any Accutane hypothesis, and the staff psychologist concluded that I was self-harming, and said that they wouldn't continue treatment unless I started going to the shrink.

This infuriated me. Not that I was against seeing a psychologist - certainly I was struggling under a heavy mental load! But that they would just baldly assert as self-evident fact I was doing all this to myself out of neuroticism was extremely insulting. Here I am fighting to the death to wring a few drops of lucid productivity from a zombie, and their conclusion is, "It's all in your head, so quit slacking off and pick up a hamburger."

I hate pompous midwits who believe credentials and bureaucracy are a substitute for ethics, intelligence and liberty.

Anyhow, I went to a better holistic doctor who had left the "system" on ethical principles, and who specialized in hard cases. She ran a battery of tests which included a fecal calprotectin test, an IBD diagnostic used in Europe which hasn't made it to the American health "don't care" system.

This test FINALLY showed a problem, the first time I'd gotten a reading on anything that wasn't due to malnutrition. My calprotectin levels were sky-high, which is normally associated with IBD, but can have other causes such as cancer.

Now that I finally had a solid lead, fixing the problem was easy. Differential diagnosis suggested Crohn's. I did some research on Crohn's, found Low Dose Naltrexone, got a prescription for like $200 from Ldnconsult.com, and ordered from their recommended pharmacy (yes it does make a difference, at least for IBD. Fillers and whatnot).

I did one cycle of a month or two and that was it, I was fine. Meaning, I could eat more stuff. Not necessarily everything - I try to avoid fruit and processed food and alcohol and gluten. But i can eat normal stuff like vegetables and meat and eggs and what have you. And when I do deviate from the diet, it's not catastrophic.

So... starving to not starving. Regained all my weight, replenished my vitamins, quit smoking cold turkey, doing great.

I could expand my diet more, possibly, to overcome fructose and gluten sensitivity. It just hasn't been a priority because I've been getting my life back together after 10 years of this.

Now I highly doubt this will work for everyone, and it might not work for anyone. But I would suggest a calprotectin test for those with IBD-like symptoms - it tests inflammation. And I would suggest everyone try LDN, because it has almost no side effects other than vivid dreams if you titrate the dose up too quickly. It's the polar opposite of Accutane in every way, from invention to history to current FDA status to side effects to the fact that nobody makes a dime off of it.

Check it out. Even if it doesn't fix your condition it should result in an excellent night's sleep, which always helps.

I also strongly second the Weston A. Price Foundation's recommendation of Blue Ice Fermented Cod Liver Oil / Butter Oil Blend. It works great... UNLESS you're so messed up by Accutane/whatever that fat soluble vitamins make your body go haywire. (Which was the case for me until after LDN.) The stuff is super strong so be careful. Take a tiny amount IN THE MORNING ONLY. Like, a quarter of a grain of rice for your first time.

Back when my fat soluble vitamin levels were deathly low, I replenished with a tiny bit of the stuff, and wound up staying up for 36 hours. You've been warned!

Timeline: It's been roughly 4 months since the first LDN cycle. I didn't realize until three months ago that I could eat whatever I wanted. I quit smoking from a pack a day to zero at the same time. Pigging out helped! No nicotine patches or gum or tapering, just cold turkey.

I like your mentality, I've been having the same thoughts for a long time. I have no experience with anything of this sort, but it seems like option 1, contacting the university, would be a great place to start. My reasoning is that if there is a university that might be helpful, it's best to simply take advantage of opportunities like these first.If they can personally take such donations that would save a lot of effort and grant it legitimacy. Perhaps we could set up some sort of kickstarter or something similar just to publicize it.

If that fails we can go to option 2. And if that fails, or even just besides all of this, perhaps see what exactly it would take (in times of time/money/expertise) to create a tax-exempt non-profit dedicated to promoting awareness and funding research. This would avoid the problems of a mere fundraising web site, with associated downsides. It still might be worth it. That would be my recommendation over the web site, but anyone please feel free to correct me if you disagree with this reasoning.

For whatever it's worth, I'd be willing to pretty much donate whatever time and effort I need to dohelp, and to seek a favorable outcome over a relatively long-term period of time when immediate results aren't feasible.

With Low Dose Naltrexone what is the exit strategy, how long do you plan on being on it??

I mean great that it helps but is it safe to be on it long term?

Its not so much a supplement but more a drug so I worry about side effects understandably.

If anyone can shed some light on LDN that would be great!!?

On 8/30/2016 at 7:43 PM, ACCUiTy_drANE said:

I have been thinking more lately about fundraising research for those of us devastated by these side effects. Has anything been set up yet?! Let's jump in. I know this is a goal of [removed] and I applaud that. Like them, I am just tired of waiting. There are two-three ways we go do this.

1. Contact that university who initially expressed interest in doing research. Tell them we want to get started so they can set up a spot for donations directly on their site. This will circumvent the usual fees associated with fundraising sites. People will also KNOW they are NOT giving their money to a scammer.

2. Reach out (send emails, phone calls, etc.) to other universities and try to set up something similar.

3. Find a fundraising website that allows for multiple admins. On some platforms, it is possible to give multiple people a key for releasing funds. For example, money is raised in a certain account. 3 admins have a unique password for releasing the money to another source, and at least 2 out of 3 must input their specific code for anything to happen. This safeguards against fraud or anyone holding the money hostage. However, I do not know of any mainstream fundraising websites with this feature. (Please let this be possible for more than just bitcoin. . . )

Okay, someone give me some input. What do you think? I obviously prefer option 1 or 2.

I literally sent out hundreds of emails to doctors, universities and researchers - almost no response. A researcher in Brasil who has researched Vit A toxicity got back to me a few times (his articles scare the hell out of me) but expressed concerns about the difficulties in researching such a drug as accutane; the fear factor re the pharmaceutical companies - I kid you not!

There are 4 charities in the US who invite applications from people who are suffering from rare/genetic disorders. They have doctors that research the conditions. I got no response from any of them.
You would think Doug Bremner would take up our cause but I got no response from him either. (Only see him discuss depression and brain damage from accutane).

We should all bombard David Healy - I at least got a response from him but only to say that no research was going on. He said that my situation was very grave but that he couldn't help me because he gets hundreds of emails from people like me every day and that there is nothing that he can say that will help. I was in a bad way when I contacted him and I did not find his response helpful. However I do think he is in a position to speak out in the media if enough pressure was put on him. He knows the damage that accutane causes and he should be doing more to help!!

If we had representatives from this forum that was able to put forward a case we might actually get more response.
I think you, Dubya or Indigo would all be great for this. I wish indigo would do more youtube, but be more aggressive about getting the message out there about accutane and the long lasting side effects. I wish in his pod casts he would act as a spokesman for all the stories that he hears and knows about, not just his own personal experience. I know this is a big ask but I really think he would be a great representative for us all.
He would need a lot of help of course.
If we could build up enough credibility and media attention it would eventually lead to some research being done.
What we need is one of them daytime shows to interview someone like Indigo and then ask people who have taken accutane to get in touch and give their stories. I though there were quite a lot of shows in the US that do this type of thing.

Some of you must have seen the interview that Paul gave about propecia on the 'this morning' show UK, it garnered a lot of media attention which will certainly help him with his claim for compensation.

I know a group of parents set up a action group but they no longer exist and it's hard to get info on them as all their websites were shut down.

That's what we really need again but it takes man-power, money and commitment.

I really like the way you are thinking Accuity - keep driving things forward!

Hatetane, thank you for the kind words. And thank you for trying to reach out to so many esteemed people. It seems that most experts do not know where to begin. When you approached all of these people, I assume it was primarily for advice, correct?In reading over your post over again, it sounds like you probably did inquire about research being done, given the fact you emailed universities. But perhaps all it takes is talking to the right researcher/doctor to get the ball rolling.

No one can quite narrow down what SPECIFICALLY may have led our problems. Fair enough. Maybe if we contacted these experts from the frame of mind of, "Can you help us FIND answers? Do you have a team capable of conducting a study on post-Accutane users? Can we crowdsource on your behalf? Etcetera." (I apologize if that is exactly what you did. I am not trying to downplay your efforts.) Ex-Finasteride users were/are in the same dilemma in that NO experts can pinpoint what may be wrong, but a team of researchers were, nevertheless, convinced to look into it. That's all we need. One step at a time; we don't need answers yet (well, we do, but. . . ). We need an assembly of bright minds actively looking into it, first and foremost. I give you credit for trying. Perhaps we simply need more of us rocking the boat.

You make an EXCELLENT point that media attention would help. For what it's worth, I think I will try making videos on the matter. As you eluded to, in America, they like to make a story out of everything. In my past vlogging days, there were occasional, quirky TV agencies contacting me about a story they were doing. Lots of vloggers can attest to this. It's the age we live in. It could help shed a spotlight on the issue if people joined me. Sometimes you have to appeal to peoples' emotions before they give a ****. Facts, logic, and numbers don't always pay off.

John86: Another possibility is that the [removed] website eventually recruits a respectable audience so that us post-Accutane sufferers are no longer so fragmented across the internet. Then, the website could promote some sort of large fundraiser, whether it is a part of the website itself or something different. I have no idea about all those logistics, so I can't comment on what is best. In the mean time, I would love to jump in and raise money somehow. Based on Hatetane's comment, having a fundraiser directly associated with a university is going to take some serious leg work. I think we should be sending emails full-time at this point. Express interest in having research done. Spread the word. If a university is open to the idea of conducting research (regardless of whether or not they will help us raise funds on their site), that will provide serious motivation for us to continue getting better organized.

10 hours ago, JosephBuchignani said:

Now that I finally had a solid lead, fixing the problem was easy. Differential diagnosis suggested Crohn's. I did some research on Crohn's, found Low Dose Naltrexone, got a prescription for like $200 from Ldnconsult.com, and ordered from their recommended pharmacy (yes it does make a difference, at least for IBD. Fillers and whatnot).

Timeline: It's been roughly 4 months since the first LDN cycle. I didn't realize until three months ago that I could eat whatever I wanted. I quit smoking from a pack a day to zero at the same time. Pigging out helped! No nicotine patches or gum or tapering, just cold turkey.

I've been hearing great things about Low-dose Naltrexone for months now. I read an anecdote of someone with chronic fatigue who commented that the morning following his first dose, he woke up with an erection for the first time in years. He also expressed feeling immensely clearer-headed. Unfortunately, he did not stick to the treatment for longer than a week when he noticed the effects fading. However, most supplements/drugs have a honeymoon phase. LDN is definitely something you have to commit to, as it gradually up-regulates opioid receptors and normalizes the immune system. Your post nearly sent me over the edge to apply for a prescription.

From the sounds of the website, as long as they accept your application and agree to schedule an appointment, they will likely write you a prescription. But do they ask for proof of any diagnosis during the meeting? I was never formally diagnosed with IBS or any fatigue disorder, simply because I doubt there is any medication a medical doctor could give me that would help more than what I could buy on my own. I can prove my past medical complaints (anhedonia, gastrointestinal distress, foggy feelings), but there is little I can officially point to as a reason I could benefit LDN. :\ (It's not my fault my doctor tries to pass me off to a psychologist for every problem.) I just wanted your input on this. LDN is not a scheduled substance, but I would prefer to do this as above-board as possible.

5 hours ago, hatetane said:

I literally sent out hundreds of emails to doctors, universities and researchers - almost no response. A researcher in Brasil who has researched Vit A toxicity got back to me a few times (his articles scare the hell out of me) but expressed concerns about the difficulties in researching such a drug as accutane; the fear factor re the pharmaceutical companies - I kid you not!

Hey hatetane, you have made a good movement, what we all should do. I am curious about thin Brazilian researcher, i am Brazilian, do you still have his contact?

On 8/31/2016 at 7:17 AM, ACCUiTy_drANE said:

Hatetane, thank you for the kind words. And thank you for trying to reach out to so many esteemed people. It seems that most experts do not know where to begin. When you approached all of these people, I assume it was primarily for advice, correct?In reading over your post over again, it sounds like you probably did inquire about research being done, given the fact you emailed universities. But perhaps all it takes is talking to the right researcher/doctor to get the ball rolling.

No one can quite narrow down what SPECIFICALLY may have led our problems. Fair enough. Maybe if we contacted these experts from the frame of mind of, "Can you help us FIND answers? Do you have a team capable of conducting a study on post-Accutane users? Can we crowdsource on your behalf? Etcetera." (I apologize if that is exactly what you did. I am not trying to downplay your efforts.) Ex-Finasteride users were/are in the same dilemma in that NO experts can pinpoint what may be wrong, but a team of researchers were, nevertheless, convinced to look into it. That's all we need. One step at a time; we don't need answers yet (well, we do, but. . . ). We need an assembly of bright minds actively looking into it, first and foremost. I give you credit for trying. Perhaps we simply need more of us rocking the boat.

You make an EXCELLENT point that media attention would help. For what it's worth, I think I will try making videos on the matter. As you eluded to, in America, they like to make a story out of everything. In my past vlogging days, there were occasional, quirky TV agencies contacting me about a story they were doing. Lots of vloggers can attest to this. It's the age we live in. It could help shed a spotlight on the issue if people joined me. Sometimes you have to appeal to peoples' emotions before they give a *. Facts, logic, and numbers don't always pay off.

John86: Another possibility is that the [removed] website eventually recruits a respectable audience so that us post-Accutane sufferers are no longer so fragmented across the internet. Then, the website could promote some sort of large fundraiser, whether it is a part of the website itself or something different. I have no idea about all those logistics, so I can't comment on what is best. In the mean time, I would love to jump in and raise money somehow. Based on Hatetane's comment, having a fundraiser directly associated with a university is going to take some serious leg work. I think we should be sending emails full-time at this point. Express interest in having research done. Spread the word. If a university is open to the idea of conducting research (regardless of whether or not they will help us raise funds on their site), that will provide serious motivation for us to continue getting better organized.

On 8/31/2016 at 7:17 AM, ACCUiTy_drANE said:

Hatetane, thank you for the kind words. And thank you for trying to reach out to so many esteemed people. It seems that most experts do not know where to begin. When you approached all of these people, I assume it was primarily for advice, correct?In reading over your post over again, it sounds like you probably did inquire about research being done, given the fact you emailed universities. But perhaps all it takes is talking to the right researcher/doctor to get the ball rolling.

No one can quite narrow down what SPECIFICALLY may have led our problems. Fair enough. Maybe if we contacted these experts from the frame of mind of, "Can you help us FIND answers? Do you have a team capable of conducting a study on post-Accutane users? Can we crowdsource on your behalf? Etcetera." (I apologize if that is exactly what you did. I am not trying to downplay your efforts.) Ex-Finasteride users were/are in the same dilemma in that NO experts can pinpoint what may be wrong, but a team of researchers were, nevertheless, convinced to look into it. That's all we need. One step at a time; we don't need answers yet (well, we do, but. . . ). We need an assembly of bright minds actively looking into it, first and foremost. I give you credit for trying. Perhaps we simply need more of us rocking the boat.

You make an EXCELLENT point that media attention would help. For what it's worth, I think I will try making videos on the matter. As you eluded to, in America, they like to make a story out of everything. In my past vlogging days, there were occasional, quirky TV agencies contacting me about a story they were doing. Lots of vloggers can attest to this. It's the age we live in. It could help shed a spotlight on the issue if people joined me. Sometimes you have to appeal to peoples' emotions before they give a *. Facts, logic, and numbers don't always pay off.

John86: Another possibility is that the LastingSides website eventually recruits a respectable audience so that us post-Accutane sufferers are no longer so fragmented across the internet. Then, the website could promote some sort of large fundraiser, whether it is a part of the website itself or something different. I have no idea about all those logistics, so I can't comment on what is best. In the mean time, I would love to jump in and raise money somehow. Based on Hatetane's comment, having a fundraiser directly associated with a university is going to take some serious leg work. I think we should be sending emails full-time at this point. Express interest in having research done. Spread the word. If a university is open to the idea of conducting research (regardless of whether or not they will help us raise funds on their site), that will provide serious motivation for us to continue getting better organized.

Your somewhat right. I suspect my approach was a little to personal, which is why we need our whole group/forum to have representation. We could do with a topic headline on this forum where every one gives
a concise history of dose, duration, side effects and blood test results. a template would be good. They have something similar on the propecia website, it's really good. This would help build up a picture.
I did have a doctor who originally expressed some interest in researching the sexual sides. I just wasn't able
to get enough response; 7/8 people claiming to have sexual side is not going to make anyone invest time or money in this. We need hundreds of case files that are easily accessible.
John 86, would you be interested in setting this up?

Accuity, this is one of the organizations i mentioned:
https://rarediseases.info.nih.gov/guides/pages/120/support-for-patients-and-families
google 'I need help with researching medical problems'

aybe you could compose a professional email which you could print here and then everyone on here can resend it to anyone who they think might help.
Let's pull this all together!

On a side note, anyone see that family who just moved from the UK to america; NY I think. The two dads who have surrogate twins who just turned 16. One of the guys is a trained dermatologist. I think they arrange trials now. I am so crazy Ii will reach out to anyone if i though it might help!

On 8/31/2016 at 11:27 AM, hatetane said:

 

Accuity -it would be really great if you did do a video.
Anyone else brave enough to do youtube?
Dubya - your story is one we really need to be out there - is it something you would consider?

On 8/31/2016 at 12:41 PM, PedroE said:

Hey hatetane, you have made a good movement, what we all should do. I am curious about thin Brazilian researcher, i am Brazilian, do you still have his contact?

Marcos de Oliveira [Edited email out]Actually he did suggest contacting groups concerned with public health - any ideas anyone?

Everyone should reach out to this guy - he has written many papers on accutane.

[email protected]

I seek out anyone who has written an article (pubmed etc) or who has spoken out about accutane and I try and track them down.
Jessie Jones dad might also be an advocate for us but I have not approached him yet as it is a bit delicate. He does make documentaries though so we really should approach him - someone who is sensitive should do this - don't be bullish like me!

Thanks man! A documentary would be awesome.

Just came across a great video with loads of resources for things that may help you guys. I am doing many of them.
Here it is: link
Read the description of the video for ideas.

By the way, from the past few years of my research I've found there are 3 things that one should focus on.
In order: Fixing subconscious emotional problems, detoxification, and infections.

22 hours ago, TrueJustice said:

With Low Dose Naltrexone what is the exit strategy, how long do you plan on being on it??

I mean great that it helps but is it safe to be on it long term?

I think it's safe, but do your own research like I did. Anyhow I only needed to use it for about a month IIRC. Then I was able to eat a broad range of foods.

Lots of people stay on it long term. Some need to cycle it every few months to maintain the benefits; others don't.

I decided to get back on LDN a coupla days ago as part of a general refocus on health. I let a lot of things slide once I didn't have to be so crazy controlled. I overworked etc to catch up. Now I want to generally get back in shape. LDN helps me go to bed and doesn't seem to have any negative effects other than the aforementioned.

18 hours ago, ACCUiTy_drANE said:

I've been hearing great things about Low-dose Naltrexone for months now. I read an anecdote of someone with chronic fatigue who commented that the morning following his first dose, he woke up with an erection for the first time in years. He also expressed feeling immensely clearer-headed. Unfortunately, he did not stick to the treatment for longer than a week when he noticed the effects fading. However, most supplements/drugs have a honeymoon phase. LDN is definitely something you have to commit to, as it gradually up-regulates opioid receptors and normalizes the immune system. Your post nearly sent me over the edge to apply for a prescription.

From the sounds of the website, as long as they accept your application and agree to schedule an appointment, they will likely write you a prescription. But do they ask for proof of any diagnosis during the meeting? I was never formally diagnosed with IBS or any fatigue disorder, simply because I doubt there is any medication a medical doctor could give me that would help more than what I could buy on my own. I can prove my past medical complaints (anhedonia, gastrointestinal distress, foggy feelings), but there is little I can officially point to as a reason I could benefit LDN. :\ (It's not my fault my doctor tries to pass me off to a psychologist for every problem.) I just wanted your input on this. LDN is not a scheduled substance, but I would prefer to do this as above-board as possible.

LDN should not be a prescription drug at the minimal doses relevant here.

No proof is requested or required. It would be very possible to fabricate a medical history involving a prior successful prescription for LDN, for which one simply needs a refill. Then one could select the cheaper, shorter interview. The outcome - an LDN prescription - would be the same. However, one would obviously not gain the benefit of that doctor's experience and advice.

Up to you.

---

That guy who quit after a week was really dumb. It takes a month minimum just to titrate the dose up properly. Then you need to provide time for the inflammation to abate, and additional time for healing of whatever damage has been done.

He probably experienced a big positive initial effect, same as me, then ran into some sleep shortness and quality issues during the first-week adjustment phase, same as me. Since fatigue was his key metric, he then gave up.

Well, you're going to have some initial sleep adjustment issues, which is why you need to titrate the dose up gradually, over a month at least. Thus there's no way that guy gave it a proper trial.

It's not a flashy whiz-bang medication. Just a good night's sleep... repeatedly.

21 hours ago, hatetane said:

Your somewhat right. I suspect my approach was a little to personal, which is why we need our whole group/forum to have representation. We could do with a topic headline on this forum where every one gives
a concise history of dose, duration, side effects and blood test results. a template would be good. They have something similar on the propecia website, it's really good. This would help build up a picture.
I did have a doctor who originally expressed some interest in researching the sexual sides. I just wasn't able
to get enough response; 7/8 people claiming to have sexual side is not going to make anyone invest time or money in this. We need hundreds of case files that are easily accessible.
John 86, would you be interested in setting this up?

Yeah, I'd definitely be interested. Sorry if I've been away for a while, just been occupied with school/work today but I'll be back soon.

Joseph, can you explain your undetectable levels of Vit A&D

Are you saying that this is the case presently or is it something you had and have now recovered from.

How have you gone about supplementing, dosage etc.

Can you post your blood tests results.

Most helpful, thanks

4 hours ago, john86 said:

On 8/31/2016 at 6:27 AM, hatetane said:

Your somewhat right. I suspect my approach was a little to personal, which is why we need our whole group/forum to have representation. We could do with a topic headline on this forum where every one gives
a concise history of dose, duration, side effects and blood test results. a template would be good. They have something similar on the propecia website, it's really good. This would help build up a picture.
I did have a doctor who originally expressed some interest in researching the sexual sides. I just wasn't able
to get enough response; 7/8 people claiming to have sexual side is not going to make anyone invest time or money in this. We need hundreds of case files that are easily accessible.
John 86, would you be interested in setting this up?

Yeah, I'd definitely be interested. Sorry if I've been away for a while, just been occupied with school/work today but I'll be back soon.

Thanks John

Dr mark Sirus

Hey everyone, sorry I've been off the forum for several months, been pretty busy. A quick update with how I'm going (feel free to search my history with vitamin A mega dosing); I feel that my dosages were likely excessive. I don't see myself having more than 200,000 IU in a single day, or more than 1,500,000 IU in a single month in the future. I think those level of doses can give some ofmental side effects associated with accutane use,  though they quickly diminished when I cut down to 5-10,000IU, and now I try to get appropriate amounts through diet. I have supplemented Taurine and Creatine, and believe that they both help with many physical side effects, and also helped when I was on higher vitamin A doses with the mental side effects as well, as did vitamin K. 
However, what brought me back here is the differences I've noticed since restarting my supplementation of Fish Oil. I play Australian Rules Football, and for much of this season I have been missing 15% of my marks(fumbling the ball instead of catching it), sometimes more closer to 30%, and sometimes less like 5%. Because this is one of my strengths as a player, while I am fitter and stronger than last year, my inability to consistently execute this skill has been incredibly frustrating and meant I've not been able to push to the highest level of competition like I had hoped, and in many cases play worse than last year despite more training and being fitter and stronger. Since I went on Accutane at the age of 16 I have had this problem, but last year in the later half of the year this problem vanished, and at the time I had assumed is was because I focussed on getting large amounts of Sleep. Due to how strongly I finished last year I persued my football this year. However, I now think that it was due to supplementing fish oil, as I had been having joint pain and hoped FO would help. Over the off season I started doing weights, and continued fish oil to reduce joint pain even as I began supplementing vitamin A and D, and I enjoyed success in improving strength and leaning up. During this time I didn't notice any detriment in my skills either. To pursue my football at a higher level I then moved cities, got a full time job, and started pre season. I had run out and of fish oil at this stage and had bought another, but hadn't opened it, and didn't consume as often because it was a cheaper brand, and didn't think it was a significant supplement to make better mentally and physically (Massive regret)...

A few weeks into preseason I noticed I had lost a lot of cardiovascular fitness much to my surprise. I couldn't figure out why. I didn't gain much fitness over the preseason and discontinued megadosing and instead had the vitamin D,E,K taurine and Creatine, as I worried about vitamin A poisoning, and gained much of my fitness back. 

Once the season started I was much stronger and slightly fitter than I had been last year, but that's when I noticed my skills were not where they should be, and I had slower reaction times and was quicker to panic when I had the ball, and that was the problem I've been dealing with for most of this year, though it did get better after a few weeks to an equilibrium still far below my standards from last year. My libido has been well this year, fish oil may help, if it does it is not very noticeable, but perhaps due to less frustration with my football I am in a better mood which helps, because if anything it has been better. 

Personally I think fish oil has helped in this last month, which marking efficiency up to 98-99%, and my studying into it makes me believe that it is the DHA component.
Here are some studies which may explain why, but it is often easy to find studies that support your point of view, so remain critical

http://www.ncbi.nlm.nih.gov/m/pubmed/20088810/?i=3&from=/23395782/related

http://www.ncbi.nlm.nih.gov/m/pubmed/23835930/

I'm in a bit of a rush and on my phone because my computer is dead, so forgive and typos etc. Thanks!

> Joseph, can you explain your undetectable levels of Vit A&D

These tests have a minimum and maximum threshold for detection. My fecal calprotectin was above the maximum. At my most malnourished, my vit A & D were below the detectable minimum.

> Are you saying that this is the case presently or is it something you had and have now recovered from.

I've definitely recovered from the vitamin deficiencies, since I no longer have symptoms such as impaired night vision and balance issues. I haven't had a second fecal calprotectin test, but given the general abatement of symptoms, I assume that's also doing much better.

My weight was 130 lbs at minimum and is now 167 without any weight lifting or doing anything in particular. I'm a 6 foot mesomorph.

> How have you gone about supplementing, dosage etc.

I didn't do anything special. I just followed the generally agreed upon guidelines. Just Google it. It's already been organized and explained by the LDN community.

> Can you post your blood tests results.

I haven't finished organizing the broken shards of my life, but here are some that come conveniently to hand:

Name Value Normal range
FOLATE 18.3 ng/mL >=5.9 ng/mL
MAGNESIUM 2.0 mg/dL 1.5-2.7 mg/dL
ZINC SERUM 100 mcg/dL 60-130 mcg/dL
VITAMIN D 25 HYDROXY <13.0 ng/mL 30.0-100.0 ng/mL
VITAMIN A (RETINOL) < 20 ug/dL 38-106 ug/dL
PHOSPHOROUS 4.2 mg/dL 2.5-5.0 mg/dL

Final Diagnosis
A. Stomach, biopsy:
Gastric mucosa with no pathological change.
Fragment of small bowel mucosa with no pathological change.

B. Small bowel , biopsy:
Duodenal mucosa with no pathological change.

C. Terminal ileum, biopsy:
Ileal mucosa with no pathological change.

D. Colon, biopsy:
Colonic mucosa with no pathological change.

Page needing exploring about how accutane works and what else it's doing to you.

http://max001.proboards.com

I wish I could copy and paste the higher level board topics and their summaries. Topics like: " Significant Irriversible Hormone Antagonism" and "Affected neurotransmitters and parts of the brain". Unfortunately, in addition to some good content, there's a lot of placeholders and a hell of a lot of spam.

What accutane does. Not light reading.
Isotretinoin and FOX01
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3219165/#__abstractid984712title
about FOX01 obviously, but also PPARy, IGF-1, Innate & aquired immune response, and many more mechanisms. including those that least to adverse affects like causing muscle pain, bone density, dry mucosa, hair loss, etc. ( I have the dry eyes/nasal passages (and mouth but it didn't mention mouth) and maybe the muscle ache. ) ) and hair loss.

Linking diet to acne metabolomics, inflammation, and comedogenesis: an update

Bodo C Melnik

Department of Dermatology, Environmental Medicine and Health Theory, University of Osnabruck, Germany

Abstract: Acne vulgaris, an epidemic inflammatory skin disease of adolescence, isCLOSELY related to Western diet. Three major food classes that promote acne are: 1) hyperglycemic carbohydrates, 2) milk and dairy products, 3) saturated fats including trans-fats and deficient -3 polyunsaturated fatty acids (PUFAs). Diet-induced insulin/insulin-like growth factor (IGF-1)-signaling is superimposed on elevated IGF-1 levels during puberty, thereby unmasking the impact of aberrant nutrigenomics on sebaceous gland homeostasis. Western diet provides abundant branched-chain amino acids (BCAAs), glutamine, and palmitic acid. Insulin and IGF-1 suppress the activity of the metabolic transcription factor forkhead box O1 (FoxO1). Insulin, IGF-1, BCAAs, glutamine, and palmitate activate the nutrient-sensitive kinase mechanistic target of rapamycin complex 1 (mTORC1), the key regulator of anabolism and lipogenesis. FoxO1 is a negative coregulator of androgen receptor, peroxisome proliferator-activated receptor- (PPAR), liver X receptor-, and sterol response element binding protein-1c (SREBP-1c), crucial transcription factors of sebaceous lipogenesis. mTORC1 stimulates the expression of PPAR and SREBP-1c, promoting sebum production. SREBP-1c upregulates stearoyl-CoA- and 6-desaturase, enhancing the proportion of monounsaturated fatty acids in sebum triglycerides. Diet-mediated aberrations in sebum quantity (hyperseborrhea) and composition (dysseborrhea) promote Propionibacterium acnes overgrowth and biofilm formation with overexpression of the virulence factor triglyceride lipase increasing follicular levels of free palmitate and oleate. Free palmitate functions as a danger signal, stimulating toll-like receptor-2-mediated inflammasome activation with interleukin-1 release, Th17 differentiation, and interleukin-17-mediated keratinocyte proliferation. Oleate stimulates P. acnes adhesion, keratinocyte proliferation, and comedogenesis via interleukin-1 release. Thus, diet-induced metabolomic alterations promote the visible sebofollicular inflammasomopathy acne vulgaris. Nutrition therapy of acne has to increase FoxO1 and to attenuate mTORC1/SREBP-1c signaling. Patients should balance total calorie uptake and restrict refined carbohydrates, milk, dairy protein supplements, saturated fats, and trans-fats. A paleolithic-like diet enriched in vegetables and fish is recommended. Plant-derived mTORC1 inhibitors and -3-PUFAs are promising dietary supplements supporting nutrition therapy of acne vulgaris.

Keywords: acne, comedogenesis, diet, inflammasome, metabolomics, quorum sensing