Don't you guys think we should each of us post the therapy, supps, drugs, herbs, whatever that has helped us the most throughout our journey with those accutane induced side effects ?
I really think it might be very useful, for us as for new comers.

Like a list, at what dosage, how long, which brand .. I know everyone is different, and has been affected differently by the drug . But still, I feel we should do this, with as most details as possible .

I thought about this when I look at the different opinion about liver flush .. To weigh the pro and con, gather as much experiences and have a better spectrum about its potential benefits or harmfulness

52 minutes ago, EuphoricJelly said:

I've talked to two individuals, one of whom was active in this forum but is no longer (Tom87) . He is doing a lot better because of liver flushes and water/coffee enemas

What this is doing is speeding up bowel movements. Not allowing things to stagnate or toxins to procreate. This is ultimately what could be making him feel better. liver flushes are mainly epsom salts right? its a strong laxative. This might have nothing to do with the liver.

In playing the devils advocate here, to anyone who got brain damage or bowel cancer from Accutane - no amount of liver flushes or Tudca or anything is going to help a person yeah???

To the guy entertaining the idea of lumbar punches to relieve head pressure etc, if he gets relief what does that say about addressing the liver??

For me the whole idea of addressing the liver is to get rid of this head pressure, get rid of brain fog, to sleep better etc.
What if with all the liver work I've done, it's now clean and I need to address CNF and spinal fluid etc some other problem?

With the list of side effects from tane, it is possible that one can have a side effect that isn't liver related correct?

Just throwing that out there....

We all have our theories, I don't have any desire to debate. I'm just stating what I've noticed help others and am trying it with an open mind. I don't believe we are all affected the same way, the reason why we don't all have the same side effects. For example, I have zero cognitive/brain issues or digestive issues, yet others would give anything to get rid of these symptoms as they are their main side effects.

I hope you all find your cure unique to you. I will keep anyone who is interested updated on how I am doing with my routine.

9 minutes ago, EuphoricJelly said:

We all have our theories, I don't have any desire to debate. I'm just stating what I've noticed help others and am trying it with an open mind. I don't believe we are all affected the same way, the reason why we don't all have the same side effects. For example, I have zero cognitive/brain issues or digestive issues, yet others would give anything to get rid of these symptoms as they are their main side effects.

I hope you all find your cure unique to you. I will keep anyone who is interested updated on how I am doing with my routine.

Dont get me wrong - I'm with you on the liver flushes.

At the end of the day though they have to work yeah? I did 5 of them following procedure perfectly ( Moritz cleansing technique ) I got nothing in terms of energy or less dryness etc.

You're right, everyone is unique and you may respond entirely differently. I do believe they get something out having seen first hand on 2 of them what I passed. Let us know how you go!?

Ps, Some debate that all you're passing is the olive oil, if that were the case though you'd see the same result every time but trust me you don't, each flush yields a different result.....sometimes heaps of stones, sometimes just a little and on others nothing!!!

I don't think there is anything wrong with trying a "flush" or two. I think the only risk is if you have some type of pancreatitis or hepatitis, you could further inflame an organ possibly. Other than that, I think its ok. In regards to the organ being damaged after Accutane, there are those rare cases as in the case of one young man who came on here and made a Youtube video, saying the liver enzymes were elevated and kidneys were about to shutdown, some crazy adverse effect, so they took him off the tane immediately, I mean this is why they do the periodic blood checks I believe.

However, aside from that rarity, from the point of view of most doctors who have treated patients who have chronic liver damage from years of ethanol consumption, a really toxic drug, or years of painkillers or OTC use, which show prevalent scarring on an MRI, or exhibit symptoms as jaundice in the eyes or skin. Unless they can see those signs, or scans, or blood readings...It's quite impossible to convince them otherwise that a no longer active drug has caused so much damage or is still causing damage to an organ.

I will say this, Scientists have said, and i quote, "Isotretinoin (in conjunction with chemotherapy) makes cancerous cells appear as normal." What does that mean? Only malignant cancerous cells? What about muscular cells? Liver cells? How does a drug do that without genetic transcription capabilities?

I don't know if I quite believe the storage theory, I'm pretty sure all chemicals/drugs have half lives (even plutonium-238, although its 70 years or something crazy). The best theory is gene transcription. Genetic change on a cellular level.

But, my focus is the brain and glands, particularly the hypothalamus, because it controls a lot of things throughout the body. My kidney and liver blood tests read normal, and I was/am super fucked up from Tane. I don't think its those organs. But, like you said everyone is different.

Digestive enzymes help me to break up food, absorb nutrients, and give your organs a break. I use VeganZyme or OmegaZyme. 1 a day with dinner. I eat fruits and veggies throughout the day so don't need em then. You want healthy solid brown stools. That is the goal. In life.

I also think it wouldn't hurt to be doing some of these liver flushes whilst at the same time treating hormones - the view being that one will help the other and that it is possible to do things simultaneously.

Last Year when I was seeing a new expensive doctor at the same time as the gastroenterologist, I stopped seeing this doctor and put all my energy into working with the specialist thinking everything is about to change - he's going to fix my gut and I'm finally out of this mess...that didn't happen, here I am a year later in no better state other than I'm on top of reflux issue.

I might go back to this doctor as she was about to put me on Vit D and Testosterone, I'm at a point now where I don't give a fuck, I'm willing to try it. I didn't really want to interfere with testosterone too much as I thought it could fuck me up even more but what have I got to lose!!?

Im 42 next week and have spent the best years of my life dealing with this bullshit, prior to that I hated much of teenage years dealing with acne. I just laugh at how much of my life I've spent either dealing with acne or worse dealing with Accutane.

I don't know if it's all pathetic or I'm super resilient- prob both at this stage...life is strange.

4 hours ago, TrueJustice said:

I'm at a point now where I don't give a fuck, I'm willing to try it. I didn't really want to interfere with testosterone too much as I thought it could fuck me up even more but what have I got to lose!!?

Im 42 next week and have spent the best years of my life dealing with this bullshit, prior to that I hated much of teenage years dealing with acne. I just laugh at how much of my life I've spent either dealing with acne or worse dealing with Accutane.

Yup, I'm in the same boat, 7+ years now in this mess. Have you tried testosterone boosting herb cycling, and cycles of pro-hormones (R-Andro, or AndroHard)? Some of the PFS guys are seeing some pretty good improvements following this method. I'm planning to give it a go. I've tried herb cycling before and got some benefits, but the benefits either faded with continued use, or I got high e sides. I've not tried pro-hormones before, but these are also anti-e, so I'll see how it goes. The PFS guys find after each cycle the benefits fade a little, but to a higher base-line, so slowly get better and better.

Some people have noticed some decreased kidney function at times, including myself. Have you guys ever noticed increased urinary retention since accutane? This would be similar to gastric motility in a way where things are getting backed up and could be creating additional problems.

I've noticed an increase in urination when drinking minimal amounts of liquid. It's like my bladder has shrunk. It's like my muscles have atrophied. And my hair has withered and fallen out. It's essentially like aging 5-10 years without aging naturally. At least in a layman's sense. That's what this drug has done to us, and were paying the price for it in different ways. That's pretty much it.

Hey guys,

im starting to realize that what we all have is an autoimmune disease. That's why the doctors are having such a hard time diagnosing and "curing" it. Auto immune disorders are inherently obscure and hard to treat and there's still a lot more scientific research to be done in the field. This is why you'll go 5-10 years switching from Doctor to doctor with no results.

The good and bad news is that there's not a "cure" but there are methods to manage it. I tend to find my symptoms come and go. A big thing that helps is just having an overall healthy lifestyle: eating healthy and moderate excercisefor over all well-being. I wouldn't recommend going down the route of trying to self diagnosis or "cure" yourself withvitamins/ supplemental or the health craze paranoia.

just learn to manage it and don't let it run your life !

Also, let people around you know. Your friends and family members have to understand you have your up and down days.

At least for me, what's helped tons is daily cannabis use with high levels of THC. I know most of you will be skeptical, but trust me. I never used to smoke before, but the pain and symptoms were becoming unbearable and the depression severe. therewas a study in 2014 that showed the THC in cannabis helped with the inflammationand RNa disrupted by an autoimmune disease. It might be a little far-fetched, but this is the only thing that has helped me. My body doesn't hurt, the mind fog is gone and I feel an overall sense of well-being and happiness.I'm lucky enough to live in a place where it's legal, and I know many of you guys don't , but this is the only thing that has worked for me so far.

I figure I've already fucked up my immune system in ways unknown, so what's the problem with alittle cannabis everyday to make me feel happy and like my body's not dying.

Cannibas use for most I'd say is not an option. I'm a sales executive and need my car to drive from A to B, all it would take is to be pulled over by police and tested for drugs that could be the end of my job.

I appreciate the auto immune info - you're prob right...

6 minutes ago, TrueJustice said:

Cannibas use for most I'd say is not an option. I'm a sales executive and need my car to drive from A to B, all it would take is to be pulled over by police and tested for drugs that could be the end of my job.

I appreciate the auto immune info - you're prob right...

Yeah, I understand 100%. I've gone to dispensaries and I've bought certain products (cannabis oil and creme) that gives you the relief without the high affect so I can work and drive without issue. It's definitely not the solution, but it definitely has helped when nothing else has.

Cannabis is a great tool, definitely not a cure, but has numerous benefits to one's mental and physical state. Try to find a nice balance between CBD and THC in your strains... and indica is a great relaxant and anti-anxiety... while sativa is great for the morning time on a day off when you want to be energized and feel good.

If your serious about getting your body well I would limit smoking/high doses of edibles... vaping is just as effective without potentially giving your body another foreign substance to clear out (i.e. debris inhaled when smoking that is present in most strains)

If you had to start taking a steroid like a multivitamin to be able to feel back to normal and move on with your life and possibly reverse some long standing side effects that could be autoimmune in nature, here is a review showing low dose steroids in the 5 to 10mg range are generally safe, long term.

http://www.medscape.com/viewarticle/860368
A European League Against Rheumatism (EULAR) task force examined data on safety of long-term use of glucocorticoids (GCs) and concluded that doses of 5 mg prednisone equivalent per day were generally safe for patients with rheumatic diseases, whereas doses higher than 10 mg/day were potentially harmful. The safety of doses between 5 and 10 mg/day depend on patient-specific characteristics.

I m currently taking cannabis oil for 6 months, never smoked it or tried edibles . But I m going to stop taking the oil orally and instead vaping it . I had a lot of benefits when I started, the chronic fatigue vanished, my stool were better, Brain fog also disappeared . But for three months it hasn't improved anything . But guys, you really should consider it if you haven't yet .

The strange thing is when I was taking the oil three times a day it would make me loosing hair like crazy, crazy hair shedding and my scalp was extremely dry: If I would touch my scalp/hair, lot of white dead part of skin I suppose would come out, My eyebrows thinned out too. I don't know why, my theory was/is that the cannabinoids ( fat soluble) would move away some accutane still present somewhere in the body, or in case it is not anymore in our system, that it made the part damaged by accutane reacted a lot and my body couldn't deal with it/move out accutane and hence my body was reabsorbing it. Since then Im taking the oil only one time a day. When i read the three success stories on different forum about former accutane user that got heal with the oil, i really thought it would be the same for me. I spent the whole last summer growing buds and learning rick Simpson method.
But it really is an incredible substance and is what has helped me the most.

Anyway, as a reply to the discussion about the kidney, There is for me as well an issue, I urinate more often and cant control it as I did pre accutane .

The more I think about it, I feel the brain plays a huge role in all this . It controls everything, brain issue could lead to a lot of symptoms elsewhere in the body even though physically it might bot be affected.

I'm going to try NSI-189 . It is not yet FDA approved but look it up on longecity or Reddit . Some of them are shills I suppose but a lot of report are genuine. And the results are astounding. I saw a post recently in this thread where someone tried it. It seemingly didn't do much as far as a full recovery, but everyone is different and I m feeling I should try it.

From france, sorry for the grammar .

I will keep you updated about NSI

1 hour ago, Jorcruz24 said:

im starting to realize that what we all have is an autoimmune disease.

1 hour ago, Jorcruz24 said:

just learn to manage it and don't let it run your life !

I agree with not letting it control your life or consume you, the problem is there is a chance this could worsen with time. Based on the autoimmune dysautonomia ive mentioned now a few times this is something that could be progressive.

Also if some long standing autoimmune disorder could be proven to be triggered by Accutane, I wouldn't settle for having to manage this life long if you weren't given adequate warning by the drug maker.

We have access to more information than most doctors are even up on these days thanks to the internet. We are able to come together as a group and communicate and possibly organize thanks to the internet. If we can find some blood markers to prove what ever disorder this is, I believe we legitimately would have a case.

I emailed a head neurologist at mayo clinic pertaining to our case. Two people now who took accutane tested positive for a autonomic disorder. Babis, who took accutane very recently before testing positive, and myself now who took accutane many years ago and tested positive.
I didnt expect her to get back to me, But make that 10 positive tests and some people might start to take notice. If not her, there are countless others. All of these university professors, researchers, Nero doctors have public emails. All it takes is finding one that will listen or is sympathetic to the cause, or maybe even personally familiar with Accutane.

3 hours ago, Vice-accutane said:

I'm going to try NSI-189 . It is not yet FDA approved but look it up on longecity or Reddit . Some of them are shills I suppose but a lot of report are genuine. And the results are astounding. I saw a post recently in this thread where someone tried it. It seemingly didn't do much as far as a full recovery, but everyone is different and I m feeling I should try it.

I will keep you updated about NSI

Every time I talk about NSI-189, I start to sound like a shill because it is one of the few things I have ever taken that gives me emotional depth. Just like before, music could gave me chills and brought me to tears. I felt passion when talking about things again. I do believe I have retained some of these benefits. Caffeine and NSI-189 are the top two things that have addressed my mental symptoms since stepping into this mess. I had to stop the NSI-189 after five months of consecutive use (40 mg for three months, 20 mg for two) because I started developing throbbing pains in my fingers and a strange fatigued feeling in my arms. Watch out for any pain symptoms or paresthesia. It seems this is acknowledged in the clinical trials too. After a six month + break, it took three days of reintroduction for those side effects to reappear. Very annoying, as otherwise I would have taken that stuff every day for the rest of my life.

From what I heard, the drug was essentially developed by matching hundreds of compounds against an endless line of hippocampal slices, and then the highest performers were then tested in mice/rats, and then humans. Nobody knows how the drug works; it wasn't developed based on its mechanism of action. Even the human studies show little hippocampal growth, contrary to the animal studies, which show 20% hippocampal growth in healthy subjects. Yet everyone parrots that's how the drug works. It works; the "how" is still up for debate. Apparently (not that this means literally anything), it is somewhat structurally similar to a recreational drug known asBenzylpiperazine, but I never noticed any recreational effects or tolerance. In fact, the effects were cumulative. The one peculiar thing about the drug is that you will periodically get episodes of sheer serenity, as well as HD vision. This is not related to when you dose the drug. But in my opinion, it does what an antidepressant should: It restores liveliness. We need to investigate more drugs like that, but hopefully with no painful side effects.

1 hour ago, ACCUiTy_drANE said:

Every time I talk about NSI-189, I start to sound like a shill because it is one of the few things I have ever taken that gives me emotional depth. Just like before, music could gave me chills and brought me to tears. I felt passion when talking about things again. I do believe I have retained some of these benefits. Caffeine and NSI-189 are the top two things that have addressed my mental symptoms since stepping into this mess. I had to stop the NSI-189 after five months of consecutive use (40 mg for three months, 20 mg for two) because I started developing throbbing pains in my fingers and a strange fatigued feeling in my arms. Watch out for any pain symptoms or paresthesia. It seems this is acknowledged in the clinical trials too. After a six month + break, it took three days of reintroduction for those side effects to reappear. Very annoying, as otherwise I would have taken that stuff every day for the rest of my life.

From what I heard, the drug was essentially developed by matching hundreds of compounds against an endless line of hippocampal slices, and then the highest performers were then tested in mice/rats, and then humans. Nobody knows how the drug works; it wasn't developed based on its mechanism of action. Even the human studies show little hippocampal growth, contrary to the animal studies, which show 20% hippocampal growth in healthy subjects. Yet everyone parrots that's how the drug works. It works; the "how" is still up for debate. Apparently (not that this means literally anything), it is somewhat structurally similar to a recreational drug known asBenzylpiperazine, but I never noticed any recreational effects or tolerance. In fact, the effects were cumulative. The one peculiar thing about the drug is that you will periodically get episodes of sheer serenity, as well as HD vision. This is not related to when you dose the drug. But in my opinion, it does what an antidepressant should: It restores liveliness. We need to investigate more drugs like that, but hopefully with no painful side effects.

So to be clear, NSI-189 is a prescription drug and not just something you can order on the internet??

Also, you mention side effects but did you stop taking while using it? You've mentioned you take Ashwagandha - I personally wouldn't take this along with NSI,
not saying you necessarily did but my point is we can overload on all these supplements yeah,
it's equally important to know what to lay off in all this mess, being on too many things at once could also trigger some negative side effects!!

On 09/07/2017 at 9:18 PM, tanedout said:

This isn't good to hear, so your recovery was only temporary and now you're experiencing symptoms once again?

No, not the case. That happened the first time i crashed, around 1998.

This is a snapshot from a conversation with a girl having CFS  just yesterday. At a later conversation she also told me that she has been drinking lately. The Perfect Storm :

4 hours ago, ACCUiTy_drANE said:

Every time I talk about NSI-189, I start to sound like a shill because it is one of the few things I have ever taken that gives me emotional depth. Just like before, music could gave me chills and brought me to tears. I felt passion when talking about things again. I do believe I have retained some of these benefits. Caffeine and NSI-189 are the top two things that have addressed my mental symptoms since stepping into this mess. I had to stop the NSI-189 after five months of consecutive use (40 mg for three months, 20 mg for two) because I started developing throbbing pains in my fingers and a strange fatigued feeling in my arms. Watch out for any pain symptoms or paresthesia. It seems this is acknowledged in the clinical trials too. After a six month + break, it took three days of reintroduction for those side effects to reappear. Very annoying, as otherwise I would have taken that stuff every day for the rest of my life.

From what I heard, the drug was essentially developed by matching hundreds of compounds against an endless line of hippocampal slices, and then the highest performers were then tested in mice/rats, and then humans. Nobody knows how the drug works; it wasn't developed based on its mechanism of action. Even the human studies show little hippocampal growth, contrary to the animal studies, which show 20% hippocampal growth in healthy subjects. Yet everyone parrots that's how the drug works. It works; the "how" is still up for debate. Apparently (not that this means literally anything), it is somewhat structurally similar to a recreational drug known asBenzylpiperazine, but I never noticed any recreational effects or tolerance. In fact, the effects were cumulative. The one peculiar thing about the drug is that you will periodically get episodes of sheer serenity, as well as HD vision. This is not related to when you dose the drug. But in my opinion, it does what an antidepressant should: It restores liveliness. We need to investigate more drugs like that, but hopefully with no painful side effects.

Thanks for sharing this experience! For some, the major part of benefits even started after they stopped NSI. You said you retained only " some " of the benefits after discontinuing it ?

As for the side effects, were you taking the freebase or the phosphate version?
im going to try the phosphate, maybe you should try reintroduce it as a much smaller dose, 5mg. And see. The pain you experienced isnt uncommon however, it happened to others too, some lowered the dose and get rid of it successfully .

And yes, as I am suffering from anhedonia and can't feel pleasure in anything, the only drug that seems to change something in some was NSI.

Have you noticed anything about libido? Texture of hair?

TrueJustice, NSI isnt FDA approved yet and there is little chance it will ever be I guess. It completed phase 1 trial in 2011 if I remember correctly and Start phase 2 by the end of this year . The reality is many has sourced it as early as 2012/2013 . You can't get it prescribed by a doctor.
There is one source famous all over the internet, a longecity forum member. There was a guy selling some on ebay as well but he had to stop. Neuralstem lab ( who own NSI patent) are starting a witch hunt against NSI vendor.

Ok, sounds like NSI is near impossible to obtain - I'm certainly not buying it off eBay.

Did you guys who have tried it not look into treating Testosterone first?

You're obviously taking or about to take NSI for neurological issues but what if there's a simpler option, an easier product to obtain, what if increasing testosterone is the key to it all?

Just asking so I can gather info and connect the dots etc.....

It is hard, but certainly far far from impossible . It only takes a few hours of research to find one . You can even order a kit online and then check if the product you received is legit with the kit .
I ordered some and will receive it in a few days, as I said I will keep you updated . I don't know if my source is the same as accuity-drane, but do your own research, there is a 185 pages long thread about NSI on longecity . Sources are discussed in there.

And, I really do not think testosterone is a " simplier " solution. I plan to try it, especially PROVIRON (not testosterone but DHT), which is banned in theUSA I haveheard?I Iive in France, but you can source anything nowadays, just be careful and always make sure the product is legit, even if it takes a test on it. Anyway it wouldbe two drastic different things with different spectrum of action . I will try both

8 hours ago, Vice-accutane said:

Thanks for sharing this experience! For some, the major part of benefits even started after they stopped NSI. You said you retained only " some " of the benefits after discontinuing it ?
As for the side effects, were you taking the freebase or the phosphate version?
im going to try the phosphate, maybe you should try reintroduce it as a much smaller dose, 5mg. And see.
Have you noticed anything about libido? Texture of hair?

I was taking the Phosphate version. I had already lowered the dose from 40 mg to 20 mg, after experiencing anxiety and paresthesia in my legs. This helped, but eventually other pain issues caught up to me. Perhaps I will try an even smaller dose at some point. And yes, for me, effects were more potent on it. Lastly, I cannot say it helped my libido or hair.

8 hours ago, Vice-accutane said:

And yes, as I am suffering from anhedonia and can't feel pleasure in anything, the only drug that seems to change something in some was NSI.

Drugs in the irreversible monoamine oxidase inhibitor (MAOI) class have also helped people with anhedonia. Some examples include Tranylcypromine (Parnate) and Phenelzine (Nardil). They deactivate enzymes responsible for breaking down dopamine, norepinephrine, serotonin, and melatonin. You will find plenty of promising anecdotes for these drugs. Unfortunately, many doctors only utilize these drugs as a last resort due to exaggerated worries of their side effects. The reality is, when a simple diet is followed, these drugs have less side effects than their SSRI/SNRI counterparts. They also work much better for anhedonia/anergia than SSRIs/SNRIs. Other drugs that help anhedonia include Ketamine, BPC-157, NRX-1074 (stay tuned),Psilocybin, perhaps Tianeptine, and Amineptine (no longer available but potential analogues with fewer side effects could be developed). Deep Brain Stimulation of the medial forebrain bundle also seems to show promise. This article compiles 20 antidepressants being developed, which may offer some hope as well.

11 hours ago, TrueJustice said:

not saying you necessarily did but my point is we can overload on all these supplements yeah,

Caution is always a good thing. But I have tried hundreds of supplements since quitting Accutane in mid-2012 and I am yet to incur any particular horrific reactions to any of them. Certainly, nothing that seemed to endure after treatment like Accutane. Accutane really is a unique case. Few substances can induce such persistent problems. Also, I usually cycle substances after some amount of time.

On 9/7/2017 at 5:54 PM, guitarman01 said:

They are coming to their own conclusions or making some assumptions (based on research) in that video. What is sort of shocking is with all the adverse effects possible during treatment, there hasnt been any long term follow up studies after treatment. Not one.

Ive seen one study I posted recently that may indicate excess storage of accutane that resembled vitamin a toxicity is possible.
So if someone got a fibroscan and it was abnormal, I'd definitely show them this study.
This person did have elevated liver enzymes and a enlarged liver though, indicating there was a problem.

Ultrastructural findings in the liver due to long-term retinol (isotretinoin) treatment. Significance of the perisinusoidal (Ito) cells].

https://www.ncbi.nlm.nih.gov/pubmed/14978883
Electron microscopic examination revealed changes characteristic of vitamin A toxicity: hyperplasia of the perisinusoidal (Ito) cells with evidence of their activation and transformation, increased storage of lipids and vitamin A, perisinusoidal fibrosis, damage of the sinusoidal wall, partial necrosis in hepatocytes and an increased number of lysosomes, megalysosomes and smooth endoplasmic reticulum (SER), the signs of cholestasis as well as an increased number of Kupffer cells in the lobules etc. Histochemical examination showed a high content of vitamin A in the transitional (Ito) cells and in hepatocytes

Thanks ya, you do good research interesting study.It would be great to finally know about the storage theory. I know probably not the be all end all solution to are problems the damage is done in other areas, but still you can't go through your whole life wondering is this shit stored in your body
and a possibility of contributing to a decreased quality of life and altered human experience.