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Repairing the long-term damage from Accutane

 
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8
(@togg)

Posted : 12/12/2017 11:39 pm

44 minutes ago, pimple pimp said:

you were on 10 mg only/day for how long? thanks

3 separate 6ish month periods, separated from each other by a month or two. Looking back though, every time I discontinued the medication, I got sides of post accutane syndrome (bad sleep, anxiety, depression, disassociation, etc.). I just didn't realize it because I attributed these things to other things. For example, during my first discontinuation, I was experiencing very severe disassociation (as well as poor sleep and depression), but attributed all of this to weed use (which can also cause/exasperate psychosis like symptoms). It wasn't until the second time I discontinued the drug for a month or so that I learned about post accutane syndrome, but I thought it was just people being crazy. Once back on the drug I felt better. Learned my lesson after my third time on tane though. Realized I have had a lot of 'ailments' creeping up on me throughout my accutane usage, thought it best to discontinue the medication for good, just to be safe, even though I hadn't reached the standard accumulative dosage. Then all hell broke loose. No one else is probably gonna answer here to you. Around here (in this thread of mayhem) this drug has ruined lives. I hope you understand that. There is too clear a pattern of symptoms and accutane usage among these 500+ pages now. It may not be likely to happen to you, thats just what I thought too. But it is real, your really rolling the dice.

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2
(@accutane-the-recovery)

Posted : 12/13/2017 12:23 am

14 hours ago, macleod said:

same old nonsense throughout the years. back to gut health. question is, who keeps making new accounts just to continually spread false hope and disinformation that side tracks actual research. gut health is important, no doubt. but not the cure all, clearly.

The gut lies at the center of our problems. no one here on this forum gives it enough time, as everyone wants a quick fix. It can most definitely take many months if not years to restore a gut. Everyone just has to trust the process and stop being so down all the time!! Everyone on this forum who has recovered has fixed their gut/digestion. Many researchers believe gut imbalances are at the root of many diseases, such as autism, anxiety, depression, and the list goes on! Believe me, I was in a dark place three months ago, but I didn't give up, and now I'm on the way to recovery. The biggest part of all of this is mental toughness. You have to be willing to continue your regimen no matter how you feel, and you will come out better than ever on the other side. We need to stay positive and stop saying that we're all fucked for life.

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47
(@ailaeshiz)

Posted : 12/13/2017 12:29 am

Many researchers = a couple naturopaths I know

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MemberMember
2
(@accutane-the-recovery)

Posted : 12/13/2017 1:02 am

32 minutes ago, ailaeshiz said:

Many researchers = a couple naturopaths I know

Nope

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1753
(@truejustice)

Posted : 12/13/2017 1:19 am

On 12/13/2017 at 10:07 AM, Walden Rev said:

Now Foods mk7 k2.
solgar k2

but honestly, i like your theory and i really think you should pursue this road but im taking a different one.

copper should have fixed us in 2016 according to the theories
blue ice should have fixed us in 2015
active b complex with co factors in 2016
manganese in 2017
NAG in 2016.

i just dont believe i return to the doctor and say i fixed my dick, my memory, my lower back, my hair loss with 3 months of vitamin K
message to all the accutane sufferers around the world: 3 months of Vitamin K will fix 10 years of accutane horror.

This is why i go hardware.

P.s. I was taking Glandular alongside of it

[Edited link out]

I dunno just yet with Finasteride?

I'm more inclined to take Testosterone first up, I was offered to do this about 18 months ago by a GP who said it was a bit low, this was around the time I was looking into gut health, I ended up following what my gastroenterologist wanted to do, put myself in hospital for a day and did all tests and found nothing really except reflux issues which I'm now on top of through medication

Id like to look at Testosterone in new year for the nagging tiredness and overwhelming irritability I face every single day now for 20 years.

I just don't know enough about the safety of Finasteride or exactly what it will fix.......If you're like me I have about 10 major things going on at once, Fin may only fix a few whilst Testosterone may fix up the big issues around tiredness and weak muscles etc, might even help with sleep!

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39
(@mikez)

Posted : 12/13/2017 2:34 am

^ True... just wondering how you can put yourself in hospital for a day to get all tests done? How did you get admitted etc? What setting (emergency or something else?)

I would never play around with drugs like Fin. One guy reversing his side effects to me doesnt justify (yet) going on a dangerous drug like that.

Thanks!

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1753
(@truejustice)

Posted : 12/13/2017 3:25 am

Sorry not exactly a hospital but a clinic that does colonoscopy and gastropathy tests all day long. A Gastroenterologist clinic to be precise. You spend the day there as they put you out for an hour or so to check everything out with the special cameras.

Got a referal from GP to see a gastroenterologist, with him I booked in months later to do the tests - they went in both ends and took pics, you take picoprep all weekend prior to be fully cleared out so they can take a good look, check you out for any sinister stuff that might be going on....for me the biggest issue besides just being "taned" was major reflux ( take Pariet for that )

People are saying to us toughen up its all to do with gut health, I've said this many times, a gastroenterologist will only be concerned if something sinister is found like a tumour or a growth, they will offer you nothing in the way of improving gut health, you will get more by seeing a naturopath or talking to your local chemist.

Ive done it all and I'm still fucked, and I can take any concoction given to me and will always see it through...... as I said I've done it all. Other than Vit K, if someone has some groundbreaking info on improving gut health I'm all ears but spare me the toughen up bullshit.....

If we believe what's been written about tane, that some have gotten brain damage or worse yet bowel cancer, are we suggesting the difference between that and sound health was simply cleaning up gut health??
Not that we all have those issues but come on, there's more going on than just an imbalance with our gut health surely?

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157
(@tanedout)

Posted : 12/13/2017 3:37 am

4 hours ago, pimple pimp said:

im about to start low dose accutane (under 20mg, most likely 10 mg/day)

how much were u guys on and for how long?

the 60mg+ camp seem to have it worst

You see this thread, and you're still considering going on this poison?! Are you insane?

10mg/day for 30 days for me. Suffering from persistent side effects 7.5 years later. Some people have permanent sides from a single pill. Stop trying to convince yourself it'll be ok - it's not worth the gamble - just don't go near this stuff.

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10
(@pimple-pimp)

Posted : 12/13/2017 6:57 am

3 hours ago, tanedout said:
You see this thread, and you're still considering going on this poison?! Are you insane?

10mg/day for 30 days for me. Suffering from persistent side effects 7.5 years later. Some people have permanent sides from a single pill. Stop trying to convince yourself it'll be ok - it's not worth the gamble - just don't go near this stuff.

thanks for the response man i appreciate it. again i will find a low dose where i see improvement but no sides..like i could end up taking as little as 10 mg/week theoretically..

im going to be real with u bro. acne has legitimately fucked my life. not gonna go detail but it has ruined me relationship wise, socially and economically. aside from going to work (btw i am basically shat on and given no respect purely bc of my face) i am completely isolated. ive tried everything and by jan 1st it will have been 4 years. i am desperate and will quite literally do whatever it takes....

these are the supps ill also be taking;
d3 5000 iu/day
astaxanthin 12 mg and 400 iu vitamin e to mitigate PUFA soybean oil in the accutane
k complex thorne x2 caps
b 100 complex by zehler
magnesium glycinate 400-600 mg/day
zinc and manganese

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157
(@tanedout)

Posted : 12/13/2017 7:08 am

12 minutes ago, pimple pimp said:
thanks for the response man i appreciate it. again i will find a low dose where i see improvement but no sides..like i could end up taking as little as 10 mg/week theoretically..

im going to be real with u bro. acne has legitimately fucked my life. not gonna go detail but it has ruined me relationship wise, socially and economically. aside from going to work (btw i am basically shat on and given no respect purely bc of my face) i am completely isolated. ive tried everything and by jan 1st it will have been 4 years. i am desperate and will quite literally do whatever it takes....

Well it's your call, at least you know the risks. You think your life is ruined now, just wait and see what it's like if you're unlucky enough to get persistent sides from this drug - you'll be begging to go back to how things were before. I would try every other option besides this drug, and the dosage is almost certainly irrelevant, it's like a switch being flicked, not something that builds up. I'm not going to go on though, this thread is about trying to get out this mess.

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70
(@whackutane)

Posted : 12/13/2017 8:17 am

How have you been in the last few weeks @tryingtohelp2014? Are the sides still being kept at bay? Gone for good?

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(@namelk)

Posted : 12/13/2017 12:04 pm

"Acutane penile fibrosis, this may include the artery becoming hard, stiff or thickened" as accutane resects our entire body from the outside and inside, and is DHT through 5 alpha reductase enzymes that promote organ oil and hydration , skin, etc., probably that is the cause, can repair for example that most cases accutane and pfs have the head of the penis "dry and with little sensitivity" and dry hair as well, whereas in the penis hair and head are the places with the most 5 alpha reductase enzymes, I still have acne after accutane sometimes, but they are not even the same as they were before, nowadays my skin is extremely dry and my acnes pass fast and are smaller
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(@justmom)

Posted : 12/13/2017 2:15 pm

Hi Guys.  I™ve been too busy to read the forum for awhile and as I™m reading as fast as I can to try to catch up, I™m still probably 50 pages behind, so I apologize if some of this has been hashed over and discarded as useless.

I™ll say this first, because I think it™s most valuable of all I™m going to say.  I saw awhile back that some are willing to try about anything “ so maybe someone would try this “  it was mentioned a hundred pages or so back, if it sounds familiar.  I doubt anyone tried it.

Budwig Protocol for Cancer “ before you say œwe don™t have cancer read the science behind this and decide if it might help “ truly think it might help your bodies absorb and process whatever supplements it is you might be needing.   This is from [removed]   I won™t copy and paste much, because I know how I skim stuff when there™s too much.

The cells of our body fire electrically. They have a nucleus in the center of the cell which is positively charged, and the cell membrane, which is the outer lining of the cell, is negatively charged. We are all aware of how fats clog up our veins and arteries and are the leading cause of heart attacks, but we never looked beyond the end of our noses to see how these very dangerous fats and oils are affecting the overall health of our minds and bodies at the cellular level.

 

Dr. Budwig discovered that when unsaturated fats have been chemically treated, their unsaturated qualities are destroyed and the field of electrons removed. This commercial processing of fats destroys the field of electrons that the cell membranes (60-75 trillion cells) in our bodies must have to fire properly (i.e. function properly).

 

The fats' ability to associate with protein and thereby to achieve water solubility in the fluids of the living body”all this is destroyed. As Dr. Budwig put it, œthe battery is dead because the electrons in these fats and oils recharge it. When the electrons are destroyed the fats are no longer active and cannot flow into the capillaries and through the fine capillary networks. This is when circulation problems arise.

 

Without the proper metabolism of fats in our bodies, every vital function and every organ is affected. This includes the generation of new life and new cells. Our bodies produce over 500 million new cells daily. Dr. Budwig points out that in growing new cells, there is a polarity between the electrically positive nucleus and the electrically negative cell membrane with its high unsaturated fatty acids. During cell division, the cell, and new daughter cell must contain enough electron-rich fatty acids in the cell's surface area to divide off completely from the old cell. When this process is interrupted the body begins to die. In essence, these commercially processed fats and oils are shutting down the electrical field of the cells allowing chronic and terminal diseases to take hold of our bodies.

 

Dr. Budwig discovered that when she combined flaxseed oil, with its powerful healing nature of essential electron rich unsaturated fats, and cottage cheese, which is rich in sulfur protein, the chemical reaction produced makes the oil water soluble and easily absorbed into the cell membrane.

 

If you find that a possibility, read the [removed] page linked above.  This protocol has cured people of all kinds of chronic diseases, not just cancer.  Look around the web “ there are lots of testimonials.  It™s really only two ingredients, but very specific brands only, because of the way others are heat treated “ flaxseed oil and organic cottage cheese “ Here in Colorado I bought them at Sprouts Market.  I™m sure they can be purchased at a lot of places “ but MAKE SURE that if you™re going to do it you read the protocol about what brands, etc. are okay, because many just won™t work.  You can™t just mix cottage cheese and flaxseed oil and expect it to work; it has to be mixed properly.  They say use an immersion blender, but I think a Ninja or small food processor works better and faster “ as it has to be mixed until completely blended.  I suspect that the ingredients would be easier to find in Europe than here.

I™m hoping to put both my kids on it.   Which brings me to the next thing I want to say “ I saw a few dozen pages ago that the topic was autoimmune diseases.  Interestingly enough, my daughter (never took Accutane) has POTS.  I have had so many people injured by pharma drugs that sometimes I™m not sure what forum I™m reading, it™s amazing the crossovers of symptoms and deficiencies.  So reading about POTS on the Accutane forum was kind of deja vu.  Anyway, I know from researching her problems that you can acquire POTS after a vaccine, a long illness, a traumatic event, probably other ways as well.  Some people don™t know how they got it.  My daughter got it from running cross country dehydrated, led to heat stroke, led to POTS.  You don™t need a specialist to rule it out.  Google Poor Man™s Tilt Table Test  - you™ll need a blood pressure cuff and a bed.  And a friend to catch you if you find that you have it.  ;) If you decide that the Poor Man™s TTT shows positive, consider doing more research instead of just focusing on POTS because there are several types depending on your symptoms. 

@Fchawk

Thank you for your post a few dozen pages back.  I understand your frustration when it looks like no one is paying attention, but I was and I™m sure there are non-posters who are following your guidelines right now.  Others will find it years from now and try it then.  I agree that a TBI can be caused slowly by a chemical.  I would take issue with your comment that SSRIs are okay though.  They do similar sexual damage to Accutane and might open someone up to a whole new host of problems.  Anyone who doesn't believe that, click here: 
[removed]

That will give @Gladiatoro fodder for his justified rants.  I'm with you, buddy. 

A few quick notes “ whoever was complaining of splits around their lips “ back on the forums index is another conversation about 1% hydrocortisone cream, available in any drugstore for itch and rash, gives much relief, though it doesn™t cure the underlying problem, of course.  Another suggestion I know from living in a dry state, is poke a needle in vitamin e pills and apply the oil directly to your skin. 

 Regarding an earlier topic of candida, I personally have more experience with that.  A near death accident, lacerated liver, the doctors were fearful of infection, so more antibiotics than anyone should take, left me with recurring candida that strong prescriptions would kill only temporarily.  Candida came back every time with a vengeance “ stronger than before “ I feared the RX meds were creating a superbug in me.  Went the herbal route and had great success with this product:

[Edited link out]

Finally, an update on my son “ he considers his sexual sides (total ED at one time) 80% cured from using about 60 to 75% of the recommended amount  of RSO.  He™s actually pretty satisfied leaving it there for a bit as he is in school and working and can™t tolerate the high or the risk of a drug test.  He says now his most concerning sides are brain fog, depression, anhedonia.  I™m considering just having him take CBD Oil as I think inflammation is a problem and the medical marijuana brochures say that CBD is best for inflammation.  I will also encourage him to follow 
@Fchawk's guidelines.  He has a GP appointment tomorrow to follow up on a blood test from over a year ago.  That test showed high bilirubin and high cholesterol (LDL).  If those numbers are better, I will claim another success for RSO, as I have read it can heal liver disease.   I am hoping to put him on the Budwig diet also, as I believe that will help with neurogenesis in his brain and the rest of his body.

Something that he read about elsewhere (he doesn't read here; I guess he finds it overwhelming) and had some success with for the mental/emotional sides is 5htp.  

 I will forever be grateful to this forum for making me aware of the cause of my son™s problems and for the three or four members who educated us that RSO would help.   So never feel that the forum is useless.  I actually even am grateful for those like @Gladiatoro because they show that this is a place where I can air my frustrations no matter how bad and also where I can blame it all on Accutane without anyone raising their eyebrows and looking at me like I™m crazy.  : )

 

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211
(@brendan452)

Posted : 12/13/2017 5:12 pm

Hi just a quick question as any body had a liver ultrasound done as I'm going for one very soon thanks

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157
(@tanedout)

Posted : 12/13/2017 5:34 pm

22 minutes ago, brendan452 said:

Hi just a quick question as any body had a liver ultrasound done as I'm going for one very soon thanks

Yep, twice, no issues found either time.

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0
(@swistak007as)

Posted : 12/13/2017 6:01 pm

So if it's all about DHT, are your DHT levels under the scale?

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1753
(@truejustice)

Posted : 12/13/2017 6:27 pm

1 hour ago, brendan452 said:

Hi just a quick question as any body had a liver ultrasound done as I'm going for one very soon thanks

Yes 2 over last 13 years - found to have a fatty liver. Thats not enough though to have anyone alarmed in the medical world, the response there is clean up diet and exercise more. This approach also applies to high cholesterol and prob numerous other conditions that arent life threatening but none the less need addressing

Whilst I totally agree with this approach it does nothing to help understand what to do with a taned out body/mind.....WE dont know and its now completely understood by all that doctors dont even know hence the experimenting shall continue.....

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157
(@tanedout)

Posted : 12/13/2017 6:43 pm

31 minutes ago, swistak007as said:

So if it's all about DHT, are your DHT levels under the scale?

Some people have low DHT, some have high, others normal - it's likely dependant on whether your receptors were left up or down regulated after taking the drug. There are definitely at least 2 sub-sets, probably more, of how your body is stuck when with post-accutane, PFS, PSSD etc. One of the reasons it's so hard to figure this out, and why people respond differently to things (i.e. what benefits one, doesn't benefit the other).

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1753
(@truejustice)

Posted : 12/13/2017 7:22 pm

37 minutes ago, tanedout said:
Some people have low DHT, some have high, others normal - it's likely dependant on whether your receptors were left up or down regulated after taking the drug. There are definitely at least 2 sub-sets, probably more, of how your body is stuck when with post-accutane, PFS, PSSD etc. One of the reasons it's so hard to figure this out, and why people respond differently to things (i.e. what benefits one, doesn't benefit the other).

Just to be clear, theres no receptor test as such is there?

All you can do is test Testosterone levels and go from there correct?

I got Estrogen blood test yesterday which Ill get results for next week.

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299
(@macleod)

Posted : 12/13/2017 7:27 pm

Same here, I've seen the best gastro's and endo's money can buy, as I live in a prominent area. I've had an endoscopy and everything checks out. He recommends a low fat diet and doesn't see anything wrong with supplementing with digestive enzymes or HCI bitters (look it up). He even recommends kefir to his patients with diarrhea, which I don't have, but drink often anyways. I have no bacteria overgrowth in my gut. I have a good relationship with my stomach and bowels and have good communication with them as well. Everyone should eat more raw fruits and vegetables. I urge anyone with any type of health issues to address diet first and foremost, and if you want, try a few detox methods. That is like so obvious.

But, it's not the root of Isotretinoin's trouble. The drug has the potential of disrupting homeostatis in the body system wide. How does it do that? Well, we don't know the mechanisms of action. However, I think that experts have a rough idea. And I get bits and pieces from comments and studies. We know it is toxic, we know it is a teratogen, and we know it is highly lipophilic (which is why they tell you to eat a meal when taking Accutane.)

Do you know what happens when you ingest toxic substances that are highly lipophilic? It is distributed throughout the body. Especially the areas that are high in fat. The brain being comprised of 60% fat. The liver being 10% fat. Also, it being lipophilic wold explain why there is a delayed response in some of the people.

There was a medical student that commented on a finasteride forum, and he purported that the persistent side effects seen in men who took the drug finasteride (its side effect profile resembling Isotretinoin) was due to a dysregulation of the Endocannabinoid system. It's possible. There is a strong relationship with fats and the cannabinoid receptors. So, I'll just leave it at that for now.

There is more to this puzzle than meets the eye (Gut flora or DHT). It's complicated. Just let me do my trial and error and I will eventually figure it out. Or I will die. It Happens.

------------------------------

As far as my endocrine system is concerned. I think my doctors and I have addressed it well enough.

Testosterone855ng/dL264 - 916 ng/dL

I'm fit. I run. I wake up with a full erection like a teenager again. I ate lettuce, avocado, duck eggs, and a steak today. I feel healthy. However, my brain is depressed (or suppressed would be a better word). I cannot elicit pleasure, even when I run miles and miles, my brain is not producing Anandamide or some other neuro chemical transmiter. It sucks and it's been like this ever since cessation of Accutane. For a long time. I gotta fix it.

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47
(@ailaeshiz)

Posted : 12/13/2017 7:43 pm

1 hour ago, swistak007as said:

So if it's all about DHT, are your DHT levels under the scale?

I think its the androgenic receptors that are messed up. They refuse to interact with available DHT the way they're supposed to.

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1753
(@truejustice)

Posted : 12/13/2017 8:54 pm

I thought the idea with the latest hemp oil is that its NOT supposed to get you high??

Id love to take it but, who do you get the good stuff off? especially when its still illegal as far as I know, Id have no idea who to get it from in Sydney and Im not into making my own.

Also Im a sales manager out on the road driving all day, it would only take a Random Drug Test which the cops are big on doing these days and I could lose my job...fucked if thats happening!!

As a group we definitely should be candidates for legally having access to hemp oil, its actually the one good fucking thing the medical community could do for us after all the crap in my opinion, it would certainly be a point in the right direction thats for sure....an acknowledgment at least.

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7
(@namelk)

Posted : 12/13/2017 8:58 pm

nothing depends on the level of your hormones but on the level of response (receptors) that your body has to take advantage of them
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7
(@namelk)

Posted : 12/13/2017 9:19 pm

everything that you inhibit, blocks or decreases for a while, when you stop it you are lessened it will be more because your body creates more response to that for the moment being "missing" and everything you raise with something when you stop taking what is increasing the answer to that will be less because your body thinks that "you have a lot and do not need as much" your body will always try to seek balance, you should not take anything that changes its natural form, just having a good diet and that will give you the necessary, this is for everything, hormones, vitamins, etc, if I knew the many things I know nowadays before taking accutane I would be very well, only thing that served all this disgrace of accutane was to have greatly increased my knowledge and started to study and research a lot to try to find a solution for this
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(@truejustice)

Posted : 12/13/2017 10:43 pm

1 hour ago, namelk said:
nothing depends on the level of your hormones but on the level of response (receptors) that your body has to take advantage of them

Ok, and with that in mind how can we test receptor response?

Who's field of expertise is that?

If the answer is you can't well..........

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