23 hours ago, JosephBuchignani said:

> 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.

Thank you, really appreciate you taking the time to answer my questions.
I am guessing these results were a while back and suggest you checking vit D again.
You should get your vit D up to optimal levels if you can and some post accutaners find this hard.
Good luck with recovering.

I remember reading once , if you like to drink this is not the drug for you. In other words drinking alcohol after isotretinoin treatment is NOT recommended . Isotretinoin dries the hell out of you , alcohol also dehydrates so you have a double whammy . I can't believe I ever trusted allopathic medicine .

If people want to cure there mild to severe acne cut out sugar and dairy .

Maybe we can look like taking Isotretinoin as having a traumatic brain injury that also causes metabolic imbalances, and if we do so look at what we need to try to correct them.

http://www.ncbi.nlm.nih.gov/m/pubmed/20504161/
Traumatic brain injuries can be managed, but once inflicted never 100% recover. The differences between a poorly managed TBI and a well managed one however are massive. According to the research Traumatic Brain Injuries are "associated with increased incidences of seizures, sleep disorders, neurodegenerative diseases, neuroendocrine dysregulation, and psychiatric diseases, as well as non-neurological disorders such as sexual dysfunction, bladder and bowel incontinence, and systemic metabolic dysregulation that may arise and/or persist for months to years post-injury." This sounds like it encompasses many of our symptoms, certainly too many to dismiss

http://www.ncbi.nlm.nih.gov/m/pubmed/24844176/?i=6&from=/24605947/related
These are some of the diet-related changes we can do to promote brain health and recovery, including "omega 3 fats, vitamin D, N-Acetylcysteine, branched chain amino acids, zinc, alpha-lipoic acid, magnesium, taurine, coenzyme Q10, and many phytonutrients"

http://www.ncbi.nlm.nih.gov/books/NBK209323/?report=classic
this suggests the ketogenic diet hasneuroprotective and regenerative properties, soI plan to do once this football season is over.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705194/
Mindfulness Meditation can stimulate hippocampal brain cell growth. A smaller hippocampus is correlated with a poorer recovery from TBIs, in the case of war veterans suffering PTSD at least.

http://www.ncbi.nlm.nih.gov/m/pubmed/11079535/
Study supporting Creatineconsumption as one of the top supplements for recovering from a TBI, and thisone supports Taurineuse as well.
http://www.ncbi.nlm.nih.gov/m/pubmed/27156064/

I don't think it is a coincidence that many of the things that we feel helped us recover happen to help from the recovery of TBIs as well. I've only put this together in the last 30minutes, and also on my phone, soI'm sure I've missed plenty, but going toa "Isotretinoin causes a Traumatic brain injury,as well as other damage" perspective I feel is an intelligent way to find an appropriate recovery and management protocol for Isotretinoin.

I like what you are saying about addressing Brain issues. Extremely frustrating that it was never mentioned to me that this drug could cause brain damage. Everything at that time when I went on it was watching/testing liver function and everything checked out OK during my treatment on that front, not to mention that the liver had an incredible capacity the repair itself, the brain I'm not so sure!??

The other thing that I'm still not sure about is tane's ability to cause infection throughout the body - if this is the case it would explain much of the fatigue some of us suffer as an ongoing side effect, problem is we can't seem to pinpoint what the infection is?? Colonoscopy and gut tests have come back normal so it's bloody frustrating trying to understand where to go next!?

The other area that we could explore is Oxygen Therapy to help not just the body but importantly our brains.
It's a slow process trying to recover - I'm still trying the whole liver flush scenario to try and rule that out, I'm on track for completion in 2020

On 9/1/2016 at 9:18 AM, Fchawk said:

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!

Thanks - a big up to  to anyone who comes back to give advise and share!!

7 hours ago, TrueJustice said:

I like what you are saying about addressing Brain issues. Extremely frustrating that it was never mentioned to me that this drug could cause brain damage. Everything at that time when I went on it was watching/testing liver function and everything checked out OK during my treatment on that front, not to mention that the liver had an incredible capacity the repair itself, the brain I'm not so sure!??

The other thing that I'm still not sure about is tane's ability to cause infection throughout the body - if this is the case it would explain much of the fatigue some of us suffer as an ongoing side effect, problem is we can't seem to pinpoint what the infection is?? Colonoscopy and gut tests have come back normal so it's bloody frustrating trying to understand where to go next!?

The other area that we could explore is Oxygen Therapy to help not just the body but importantly our brains.
It's a slow process trying to recover - I'm still trying the whole liver flush scenario to try and rule that out, I'm on track for completion in 2020

Did you see the youtube I posted  = oxygen, magnesium and bakings soda. Mark sirus?

thanks accutane, I lost muscle, my legs and arms are only bones, lost athletic ability, physical strenght, facemass, totally delete sexual life. Thanks for my face that look forever like a drug addict. My eyes are tired and drop every day... Never smoking, never drugs, no alcool in my life, only accutane...

people ask what happened in face and body

what happen?

In the web i found similar symptom for:

hypothyroidism, low testosterone, adrenal fatigue...

every tike i go to doctor exam are ok,  testosteron ok,  no problem... 

4 hours ago, Ruvik said:

thanks accutane, I lost muscle, my legs and arms are only bones, lost athletic ability, physical strenght, facemass, totally delete sexual life. Thanks for my face that look forever like a drug addict. My eyes are tired and drop every day... Never smoking, never drugs, no alcool in my life, only accutane...

people ask what happened in face and body

what happen?

In the web i found similar symptom for:

hypothyroidism, low testosterone, adrenal fatigue...

every tike i go to doctor exam are ok,  testosteron ok,  no problem... 

You are typically ACCUSTAINED , dosage?

12 hours ago, hatetane said:

Thanks - a big up to to anyone who comes back to give advise and share!! Did you see the youtube I posted = oxygen, magnesium and bakings soda. Mark sirus?

Thanks mate I listened to it last night - very interesting!

It remains to be seen though, is this going to work for us or lead to just another disappointment??

Are you going to get this guys book? - I'd like to know how to take baking soda, how much,when, how long to take it for - that sort of stuff.

I seriously think I have a photographic memory years ago I read about this one derm in Australia he said and I quote " we don't know the long term outcome of these patients " I would say smart derm.

6 hours ago, Ruvik said:

thanks accutane, I lost muscle, my legs and arms are only bones, lost athletic ability, physical strenght, facemass, totally delete sexual life. Thanks for my face that look forever like a drug addict. My eyes are tired and drop every day... Never smoking, never drugs, no alcool in my life, only accutane...

people ask what happened in face and body

what happen?

In the web i found similar symptom for:

hypothyroidism, low testosterone, adrenal fatigue...

every tike i go to doctor exam are ok,  testosteron ok,  no problem... 

You must have had full blood test done. Post them so that we can compare and see anything of note. What is you E level?
PM me if you like and I can give you my email.

4 hours ago, TrueJustice said:

Thanks mate I listened to it last night - very interesting!

It remains to be seen though, is this going to work for us or lead to just another disappointment??

Are you going to get this guys book? - I'd like to know how to take baking soda, how much,when, how long to take it for - that sort of stuff.

He talks about injecting for cancer but there are ways to take it and you can find tis on youtube. If you you tube Mark Sirus
you should see videos from others about how to use it. Don't forget the supposed benefits of magnesium and iodine.

41 minutes ago, hatetane said:

He talks about injecting for cancer but there are ways to take it and you can find tis on youtube. If you you tube Mark Sirus
you should see videos from others about how to use it. Don't forget the supposed benefits of magnesium and iodine.

Supposed is the word - surely we've all taken magnesium and iodine but with no lasting results??

I want to believe it all works but how many times have we been disappointed with supplements up till now?

I'll look up the links but how do we get more oxygen into the body? I've tried to use exercise, pranayama ( yoga breathing ) - again I'm at a loss?
I've seen those oxygen water supplements - don't know if that works or if it's BS either?

I'm even thinking of forking out $2K for a sleep machine, not because I have sleep apnea ( I don't ) but because I'm sick of waking up feeling exhausted every fucken day for the last 18 years.

If you get some success from this guys protocol pls share it!

Has anybody tried the ketogenic diet here for 3+ months? I'm going to give it a solid try because studies show it helps the brain recover from brain injury, as well as athletic/fitness reasons, but was wondering whether anyone else here has experience with it (I'm gonna have to learn to cook a lot of new meals )

On 8/30/2016 at 5:11 PM, john86 said:

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.

John 86

How great would it be if we could get something similar to this.
http://www.propeciahelp.com/forum/viewtopic.php?t=3556

If we ever want to get further than just a bunch of people moaning on a forum; something along these lines is what we need.

http://www.ncbi.nlm.nih.gov/pubmed/15863802
Above is a study which has been posted here before showing decreased metabolism in orbitofrontal cortex, which is "known the mediate symptoms of depression". The study then says "There were no differences in the severity of depressive symptoms between the isotretinoin and antibiotic treatment groups before or after treatment." Despite Isotretinoin causing hypometabolism of 20%... Would be interested to see how they recorded who was depressed, because the methodology must have been poor  Anyway...

Below is a study showing that the ketogenic diet induces "Beneficial changes in the brain energy profile have been observed in subjects who are on a ketogenic diet. This is a significant observation because cerebral hypometabolism is a characteristic feature of those who suffer from depression or mania"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716748/

Edit: BTW, I'm starting Keto today, shame I can't get my brain metabolism measured so I can have a before/after comparison  
Jokes aside, I will try to be self aware enough that I can give insight to see how well this works

On September 3, 2016 at 11:29 AM, Ruvik said:

thanks accutane, I lost muscle, my legs and arms are only bones, lost athletic ability, physical strenght, facemass, totally delete sexual life. Thanks for my face that look forever like a drug addict. My eyes are tired and drop every day... Never smoking, never drugs, no alcool in my life, only accutane...

people ask what happened in face and body

what happen?

In the web i found similar symptom for:

hypothyroidism, low testosterone, adrenal fatigue...

every tike i go to doctor exam are ok,  testosteron ok,  no problem... 

Dosage and duration of chemo treatment?

16 hours ago, hatetane said:

John 86

How great would it be if we could get something similar to this.
http://www.propeciahelp.com/forum/viewtopic.php?t=3556

If we ever want to get further than just a bunch of people moaning on a forum; something along these lines is what we need.

I totally agree, visiting this forum can be very frustrating and i guess this should not be the point. I am interested in creating a website pointing the success histories of people that could recover from accutane, many have done it, some say 100%, but many have recovered somehow. We should organize the information that are helpful and discuss the data that can provide us ways of recovery.

http://www.skindrone.com/
This is a website from a guy that had seb derm and organized all the information he found on the web about solving this issue. It is well organized and very helpful, not full of depressing stories as this forum. We should do some similar. Someone know how to create an website?

I'm only playing off my intuitions, but it's interesting to think that the body has coping mechanisms in place when the cellular integrity of the organism is threatened. Accutane, being a potent apoptotic agent, may have kick-started a COUNTERPRODUCTIVE bodily coping mechanism that simply is stuck on.

In summary, it may not be the cellular death in the hippocampus, hypothalamus, and sebaceous cells that is the direct problem. Rather, the body's response to this cellular genocide may be the problem. In the past, I eluded to the idea our problems may be something epigenetic or systemic in nature. It seems a fundamental change in the way the body works may likely be responsible for CFS. Post-Accutane syndrome may be a similar a deal, albeit with different metabolites (???).

This study I posted is considered revolutionary for its field. I would love to know if my "chemical signature" has anything in common with a "hibernation mode," as CFS patients clearly do. I certainly wouldn't be surprised. This why we need researchers on our side.

What an excellent post - I'll look at report soon!

CFS is such a grey area from what I understand. I see my Gastroenterologist this thurs and I'm really wanting to get his feedback on LDN which as it turns out is used by CFS sufferers. I really do feel like I'm stuck in this "hibernation mode" - prob why I don't respond or have any prolonged benefit from any of the supplements I take. They just aren't strong enough to kick start things.

Thx for posting!

2 hours ago, PedroE said:

I totally agree, visiting this forum can be very frustrating and i guess this should not be the point. I am interested in creating a website pointing the success histories of people that could recover from accutane, many have done it, some say 100%, but many have recovered somehow. We should organize the information that are helpful and discuss the data that can provide us ways of recovery.

http://www.skindrone.com/
This is a website from a guy that had seb derm and organized all the information he found on the web about solving this issue. It is well organized and very helpful, not full of depressing stories as this forum. We should do some similar. Someone know how to create an website?

I'm not knocking this forum, it just that when you visit it for the first time you haven't got a clue what is going on. You have no idea what anyone is suffering from, what's, been tried, what has helped, what bloods to have done. It just seems so hopeless. Everyone who want to repair the damage of accutane has ended up in this forum but the side effects are so varied they can't really get the support or information that they need.
We just need to start separating some of the issues and objectives in order to be more effective.

1 hour ago, hatetane said:

I'm not knocking this forum, it just that when you visit it for the first time you haven't got a clue what is going on. You have no idea what anyone is suffering from, what's, been tried, what has helped, what bloods to have done. It just seems so hopeless. Everyone who want to repair the damage of accutane has ended up in this forum but the side effects are so varied they can't really get the support or information that they need.
We just need to start separating some of the issues and objectives in order to be more effective.

Im always astounded at the amount of people who've taken accutane in the last 5-10 years, it completely astounds me it really does.

Unfortunately many of us were put on the poison back in the 90's before the internet etc but to take it these days in my mind is plain ignorance!

If I had the info that's out there today, there's no chance I'd go on this shit. So of course coming here is depressing, but to me there's nothing as depressing as seeing new members on this forum - people who've taken accutane in the last year or so????

Its nothing short of fucken moronic, It actually offends me to the core!!

2 hours ago, TrueJustice said:

Im always astounded at the amount of people who've taken accutane in the last 5-10 years, it completely astounds me it really does.

Unfortunately many of us were put on the poison back in the 90's before the internet etc but to take it these days in my mind is plain ignorance!

If I had the info that's out there today, there's no chance I'd go on this shit. So of course coming here is depressing, but to me there's nothing as depressing as seeing new members on this forum - people who've taken accutane in the last year or so????

Its nothing short of fucken moronic, It actually offends me to the core!!

As an adult I agree, however as a 16 year old I guess I had much more faith in both my parents and the medical professionals than I do now...

I now have a very healthy scepticism of the world around me

I say it with the deepest sympathy for anyone who is suffering post tane but my point is, it's so avoidable these days - so much bad shit has been said about this drug ( in the media ) that you just wouldn't touch it.

The more I think about it makes me think that the biggest fucken morons are doctors who still think it's a good idea for someone to go on it, it's plain ignorance and inexcusable!!

Anyway, I don't mean to get the forum off track as there have been some very positive and insightful posts recently that hopefully will help us all in the long run....

They hand this stuff out like CANDY to kids and young adults it's DISGUSTING , these people have absolutely NO idea of what they are getting
into .

6 hours ago, TrueJustice said:

Im always astounded at the amount of people who've taken accutane in the last 5-10 years, it completely astounds me it really does.

Unfortunately many of us were put on the poison back in the 90's before the internet etc but to take it these days in my mind is plain ignorance!

If I had the info that's out there today, there's no chance I'd go on this shit. So of course coming here is depressing, but to me there's nothing as depressing as seeing new members on this forum - people who've taken accutane in the last year or so????

Its nothing short of fucken moronic, It actually offends me to the core!!

That's all sounds reasonable to a point but I did research this drug. I knew the association with suicide but as we see every day and the doctors will tell you - kids commit suicide every day. I knew that quite a few people claimed to get IBS and bowel related problems. The side effects on the packet are extremely scary but you could say that about any drug. This is what I want you to understand; when you look up a drug that you are just about to take you will google side effects. Tell me - why would you goole accutane sexual side effects? I might do that now I obviously didn't nearly four years ago. Go on youtube (like I did) and tell me if seeing the stories about accutane on there are enough to put you off taking accutane. Aside from lingering depression not much else is said - prove me wrong if you can.
The only person who really has any impact is indigo and even he doesn't really strongly enough get the full picture across.
He is one amongst millions claiming that accutane is poison and he is seen as a bit of a crank by most people although we all know better.
Most people find this forum when they type in post accutane problems - it is way to late by then.
So please tell me what you have done to stop people taking this drug. What have you done to warn people (young kids) about the life destroying, long term, permanent side effects of this drug. Are you on youtube or anywhere other than a post accutane forum.

Why don't you make a youtube video and direct every young person considering taking accutane to look on this forum.
Admittedly in the last few years there has been more and more about the serious side effects of accutane especially regarding sexual sides but I can assure you that when I researched accutane i saw nothing relating to chemical castration.

So unless I am wrong and you are really pro-active in preventing young innocents from taking this drug then it is you who is the moron and you greatly offend me!