@Jmsil In my personal opinion i'd look out for Zinc, Calcium, Thyroid (t3 /t4), white blood count (immune system), cholesterol, liver, vitamin D, adrenals. The gluten / wheat allergy thing you'll probably have to pay for yourself, i did a comprehensive IgG food intolerance test years ago, one of the best things i ever did.

@Lukez you know bilirubin being off, is a sign of bile problems. Was it high? because that usually means that your bile is not flowing and your bile ducts are clogged.

Chico, yeah, it was high. I got into the whole prospect of it being Gilbert's Syndrome.

Like everyone here, I did the milk thistle liver cleansing type thing. Also like everyone, while it may have lowered my bilirubin (I think it was time that did it tho in the long run) it didn't change the other side effects, especially the chronic fatigue, down moods, instability, digestive problems.

It wasn't high the last time I had blood work done, btw. That original time I was tested was probably 15-18 years ago now. It stayed high for at least 8-10 years, but was never severely chronic.

Chico, I think it's important to focus on the primary problems. There are so many different and expensive ways to treat various potential problems. If you diffuse your efforts, you exponentially increase the difficulty and expense of treatment.

I was able to enjoy 100% health while eating squid, a meat that contains retinol (perhaps you're right about the retinol in scallops being too high though, since that ultimately didn't work out). As for the other toxins from animal feeds, they didn't seem to affect me either.

The primary way in which my liver damage seems to manifest is the inability to excrete bile, which shows up as light colored stool and inability to digest fat. So I avoid fat and other difficult to digest substances such as vegetable fiber.

Secondly, I seem to have a very bad case of leaky gut that prevents me from eating things like sugar or wheat.

It's now day 3 after drinking the baijiu (Chinese alcohol) and my recovery is proceeding at a similarly rapid pace. As far as I am concerned, this is the right path for me to complete symptom remission.

As for dietary expansion, that will have to be done with the aid of medications, which should be showing up any day now.

It's surprisingly difficult to get low fat zero-additive meat at restaurants, though. I've tried fancy and standard restaurants; maybe next I'll try mid-size (not hole in the wall) non-chain mom 'n pop restaurants. So far I've only succeeded at specifically health-conscious places. At the fancy places, even the chicken is super oily, so the best bet is the shrimp.

So you had a horrible experience with accutane because of all the side effects right? and now your suggesting Niacin which can cause liver damage, stomach ulsers and significantly increases the likeliness of stokes ... interesting logic

Funky - Niacin hasn't been mentioned here in months, whch I think Indigo mentioned, so I'm not sure why you are bring this up now. What are you saying - that Niacin is worse then Accutane? Accutane can also cause those 3 side effects you mentioned. From what I've learnt, Niacin is a water soluble vitamin, meaning the body to rid easily of any excess taken, certainly in the natural form of natural foods (fruit/veg). I can only see a problem if you take such high amounts of the pill versions, where you don't know what source the Niacin is coming from. To be honest tho there are side effects from Vitamin D tablets, which is why I'm cautious of taking them, and probably with other vitamin tablets too.

Anyway, thanks Luke/Chico for responding to my questions. I am now less motivated to get these blood tests... I just want something to show up, and not be wasting my time. But I do knkow after years of going to the doctors, that Accutane poisoning is hard to prove and there isn't exactly a diagnosis for it. But I know my white blood count will be low still as well as my liver.You are right in that maybe I just have an intererance to certain grains rather then a specific gluten problem to confirm celiac disease. What I willl try and do, is get the results in print form for me to keep, anmd if possible, , get print outs of my 2009/2010 blood results, and again if possible, all the blood test since taking Accutane, and if possible, print out of the blood test before I took Accutane (when done at the hospital before agreeing to take Accutane).I'm not sure if I can get printouts from almost 10 years back, but if I can I would love to be able to see how things have changed, esp before/after Accutane.

But you are absolutely right in that blood tests can only do so much. It's a fact that retinoids causes changes in DNA/genes, beyond the scope of a blood test. I guess how Accutane damage can be tested is the million dollar question. At least Nathan's Report gives a good explanation as to why Accutane does so much daamge, and how it possibly works. I'm struggling to believe evidence of how Accutane works, and how damage can be tested will ever happen. I remember Oli Girl saying scientists were looking into the telomere theory regarding Acccutane (possibly this year??) but wether that's stil happening or when the results will be available I don't know.

I was actually looking at the food allergy test. I can't remember if it's igG but you simply get a blood test and is sent to a lab, (in Lodon for my case) and you ae given on paper all the foods you are allergic/not allergy to. You can either get s small or Large Food Pallet test, with the latter costing 250. I am absolutely sure that this is an allergy test this time in regards to the immune system, rather than interance/sensitivites. However since finding out more about this test, it seems diff labs come back with diff results, so the testing isn't always accurate. It seems there isn't an allergy test that is. This is whats stopping me from doing it and just going for a regular blood test instead. Unless it's possible to have both a regular blood test and this food allergy test from the same blood. Maybe having some sort of allergy results back is better then nothing.. I don't know...

@Jmsil i can only vouch for the IgG tests, there are so many like hair analysis etc....i did a big comprehensive one that cost quite a bit of money at the time, but it was factually true everything they said i had an intolerance too, was spot on. It was the york test but it's gone up so much in price, it's 250 pound now which is a lot more than i paid about 5 years ago. But i'd look for IgG tests as they really do work, there are many cheaper options if you look around.

On 12/24/2011 at 2:42 AM, felipescalador said:

Hello members [Edited image out[

Indigo I feel your pain.

Ive been in isotretonoin for 4 years!!

I started when I was 15. Doctor never told me possible side effects and also told me dose of isotretonoin I take is too small to cause anything on a male of my height & weight so I have never done bloodwork until now.

My symptoms start maybe 2 years after taking the drug? I dont know its has been gradual as I remember if I remember correctly. So neither me or my mother suspect accutane was the cause also what can you do but trust the doctor?

my side effects

- Dry Eyes (Severe) I dont remember when this started but I blink almost every 3 seconds

- Hair-loss (Including eyebrows, facial hair 'gaps' and body hair) dry scalp

- Slow Healing,

- Brain Fog/ Memory problems

- Anxiety

- "Extreme drops of heat feeling (like being very hot / sweaty and become very cold with no temp variation)""

I thought I was the only one with these.. like for example we go out of the house at night and 10 minutes later I am the only who suddenly starts feeling cold to the point of shaking

- Rosacea. My nose is red.. and it peels with just looking at it. My skin is super sensitive.

- Joint/Muscle super slow recovery after lifting - more than the average person

- Excessive sweating.. Its just stupid the amount of sweat, specially in head face,

so embarrasing, this was a nightmare in school

- Dry mouth, chellitis, my lips through the pass of years have gotten super huge.

Made me look like I was pouting, I even udergo a lower lip reductionhuge lips

being I white male with huge lips really destroyed my confidence.. I have lots of friends but almost none female friends I just dont have the confidence to be myself without suffering severe anxiety of how they are judging me.

- Fatigue

- Overall depression and confusion (*Rhetorical question* Is this a direct symptom or am I like it because of all the other side-effects stressing me out?)

I cant believe I found accutane was the problem 4 years after [Edited image out]. At the moment I stopped taking it after consulting several doctors and all say the cause more than probably was isotretonoin. Doing blood work this week and hoping that in 3 months my symptoms dissapear. But after all the thing I have read all over the web symptons are pretty much permanent.

I am planning on doing the blood test tomorrow. I am scared of my liver since being a teen on accutane never stopped me from binging out on alcohol on weekends. I puked the day after even drinking the same as the other guys and they were all perfect the

anyone succesfully leaved behind all this symptoms?

Apply vaseline or aquaphor liberally every night before you go to bed....that'll sort out the chellitis. I've got the same thing...if i go one night without applying an emoilient on my lips they crack up very badly. Thats why i never go without applying an emoilient at night. The sensitivity of the skin, dry eyes, slow healing i've got a lot of the same things. If your skin reacts to soaps / washes use cetaphil gentle skin cleanser it'll help the sensitivity. Do you find it very difficult to gain weight? also do your joints crack when weightlifting or exercising?

Hello guys, very nice and informative thread. I have many things to share on accutane. Actually it has made me a better person BUT the process CAN be very long.

However, with this first post I would like to "reinforce" the answer of chicoesposito about nose/skin flaking. Had that issue for 4 years post accutane I was applying all the creams in the world. And it's very troublesome since you can't take a shower and do what got to do. No. That's a whole time consuming process. And my flaking was devilish because Icouldn't go through a day at work or school without having those horrible burning sensations on my face and of course redness, itching and peeling of the skin at different places but oddly very precise points : forehead, temples, nose (aisle) and cheekbone.

And the worst of the worst is that when you think your new expensive cream is the miraculous remedy, in the middle of the day the itching start to resume and so the flaking , so the redness....

Believe it or not I found out the cure for that scourge that affects at least 1/3 of accutaners. It worked for me and a friend of mine so it should work for everybody.

Here is the trick, boil your kettle and put a bag of green tea in a cup, then put some cold water on it (quickly) and apply it on your face.

And there you go your skin is protected againand starts to build a new barrier against all the outer assaults that a normal skin would.

I still remember that particular evening when i applied the teabag, it instantly worked and it has changed my daily life greatly.

Try it it cost nothing and the polyphenols in tea are known to be beneficial for skin and hair.

Also for redness you should try a bag of camolile tea.

And there you have it an inexpensive and natural way with no side effect to cure yourselves.

Not a bad tip, but it's hardly going to fix the ACTUAL torturous side effects is it?

I'm in a bad place right now.

I really hate my job.

Both of my bosses are snidey, patronising bitches with zero sense of humour.

The work is too stressful for me to take.

And I've only been there a month.

I don't know what to do.

I have fuck all money. 1000. That won't go far.

I don't know why I'm telling you guys. What the fuck can you do about it?

Everything is pissing me off right now, and I feel like I'm about to snap.

I could easily punch a brick wall and break my hand.

There is so much rage inside of me.

I'm sick of having to deal with this shit.

Coming on here and reading about back pain, arthiritis and hemorrhoids.

It's not fucking right.

Meanwhile, we're forgotten and are left to our own devices.

They have taken our money and health and now we're fucked.

I was thinking the other day and kind of had a little epiphany.... i'll preface this by saying i had a battery of tests done a year or two ago. I expected my liver to be in bad shape amongst other things, but it all came back fine with the exception of zinc......the doctor told me in no uncertain terms that i had a zinc deficiency. I was shocked that my liver labs came back normal and it took me back so i didn't pay much attention to the zinc thing....i think i took effervesant zinc for a few weeks and just forgot about it. I was reading the other day about a fellow posters success with betaine HCL. I found out that the most important nutrient for stomach acid secretion is zinc, and that people low in zinc almost always have low stomach acid as a result. The irony is that you need adequate levels of stomach acid to absorb zinc from food....so it's a vicious cycle.

Relating this back to accutane.....zinc is essential for the transport and movement of vitamin A throughout the whole body. The body uses zinc to make retinol binding protein, and thats what carries retinoic acid around your circulation and into the cells. So there is a plausible connection that maybe accutane drains the bodies supply of zinc over time. Imagine the scenerio....... your constantly ingesting this retinoic acid (from the accutane capsules) and the body has to create all this retinol binding protein just so it can carry this stuff around, eventually the body won't be able to create the retinol binding protein anymore because it's used up it's zinc supply ...so you become zinc deficient and thats when the toxicity and side effects start....because the retinoic acid isn't bound to a carrier anymore (retinol binding protein) and it's just circulating around.

This is a study that sort of reflects the effects of excess vitamin A and zinc deficiency

"Administration of excess vitamin A during gestation results in gross malformations of the fetus. It has been proposed that the mechanism of action of vitamin A in producing malformations is through a reduction in DNA synthesis and altered cellular differentiation. A similar mechanism has been suggested for the teratogenic effect of zinc deficiency. The simultaneous treatment of pregnant rats with excess vitamin A (3,000 or 30,000 IU/day) and low dietary zinc (0.4 or 9 ppm) resulted in a high incidence of fetal malformations from each treatment with no discernible interaction. Both treatments resulted in brain deformities, but zinc deficiency caused a higher incidence of lung and tail malformations and a general reduction in the uptake of ³H-thymidine into embryonic DNA. The administration of excess vitamin A resulted in a higher incidence of fetal eye and palate anomalies than did zinc deficiency but had no effect on DNA synthesis. The lack of interaction between the treatments with regard to fetal malformations, the differences in the types of organs which were affected by the two treatments, and the reduction in DNA synthesis by zinc deficiency but not by vitamin A excess suggest that these conditions alter development through different mechanisms."

I also was reading of a patent for a drug that takes a zinc salt and binds it to retinoic acid,,,,,the description says it reduces side effects like irritation and flakiness. This must have something to do with the higher zinc levels reducing the chances of toxicity, by keeping the body in ample supply of retinol binding protein.

Bringing this back to gut health.....low zinc = low stomach acid and is something we should maybe look into in relation to our digestion and all the problems we have in that regard. Lack of stomach acid can cause a myriad of digestive problems....i have seborrheic dermatitis of the skin as some of you may know....my skin itches most of the time when i eat anything, there are few exceptions to this rule - fruit being one. But the itch starts right after i've swallowed it....so i'm beginning to think it's gotta be stomach related. Your food sits for 30-40 minutes in the stomach so if the itch was later i'd know it'd be pancreatic or liver related....... but the itch is straight after i start eating. Also stomach acid is essential for sending the message to your pancreas and gallbladder to release the enzymes and bile needed to digest food. Long story short i'm going to use myself as an experiment for this over the next couple of weeks. I've ordered betaine hcl which i'll take with every meal...... and i'm going to eat as many oysters as i can muster.....the reason why i say oysters is because they have the highest levels of zinc in any food. I'm gonna see what happens along the way....gauge if theres any improvement. The oysters also contain copper as well, because zinc supplements can put your copper levels out of balance, but nature in it's wisdom has given oysters lots of copper to compensate for the very high amounts of zinc. Might be complete and utter baloney on my part, buts i'm gonna test it out and let you guys know either way.

@Chico thank you very much for all of your talks and information and for now carrying on this experiment. It does seem to hold at least some weight, so hopefully we will see results.

Unfortunately, I am pretty much with Indigo at the moment. I have so many undesirable side-effects that have been weighing my life down for so long it's a wonder I haven't completely lost it already. The joint pain, seborrhea, sensitive skin and flaking, stomach problems, back pain, and anything and everything the other people suffering have listed.

I will stay subscribed to this post in hopes that someone will find some way, any way, of mitigating these horrible side effects.

@Chico

I took varying levels of a Zinc supplement (15 - 50mg) for a year after Accutane because it seemed it help my Acne which still persisted. In fact, on the face of it, Zinc should have helped a lot of my problems - acne, hair-shedding, dandruff/SD. It definitely helped my Acne for a time, can't be certain of the others. It definitely didn't do any harm though and it is definitely worth trying, even if you get it from food.

I've stopped it since the new year because I was afraid after taking it for a year and already eating lots of meat that I would develop a toxicity. I can't say I've noticed anything getting worse being off it, it seemed to have lost it's effectiveness for some time anyway.

Interesting about the HCI, I've been meaning to try it. Seems like it may also help. I've heard reports of it stopping hair loss and clearing rosacea pretty quickly.

Just a question for everyone in this thread. If you have Vitamin A intolerance problems, does Beta Carotene or preformed Retinol effect you more? Do Carrots/Vegetables affect you worse than say Eggs/Fish?

Chico -

I swear you're our best chance at getting out of this, and I thank you for staying with us.

I pledge that if we ever get out of this, we must all meet up and have a drink.

I will personally french kiss anyone who can give me my life back.

Whether or not the HCl (Betaine) will work, I'm not sure.

Although, it doesn't give me massive hope when Luke said he's tried this and is still stuck in quick sand.

I think I mentioned though, I've ordered some myself from iHerb and should receive it soon.

I really want to believe there is a way out of this, because even if we don't know what the way out is, there's a chance we can get better.

Maybe we'll find the answer one day.

I don't want to consider that this could be the rest of my life.

I know that my life would be amazing if I got over this.

I know that my life is riding on this. It's clearly not possible to live like this.

I can be happy for several days sometimes, but then I come crashing down again.

Clearly, I was having a bad day when I posted my last message.

I didn't mean to come across as ungrateful to Frenchy.

I had a look on here with my phone, and I glanced the word 'cure'.

When I read what he'd put, it felt like an anti-climax.

I still pray that I'll come on here one day and someone will tell me how to get my health back.

Last night, after I'd posted my comment on here, I had an argument with my girlfriend.

We'd kind of fell out on the phone, and I didn't know she was coming round.

I just saw her in my room after I'd shaved my face (which has become a total chore because my skin gets irritated easily) and said, bluntly and sarcastically, 'Great, you're here'. I hate how I get. I find it hard to stop myself saying things. When people are getting on my nerves, it seems I want to hurt them (with words). I become really horrible and then just feel guilty after. I think I've got a lot worse with this the last year. I know it's not really my fault, because these are unreasonable circumstances. What actually pissed me off last night was when she said 'You've got nothing to be upset about'. I think she does understand (as much as she can) what I'm going through.

Being at work, and feeling incapable of being able to do things properly (i.e. wake up in the mornings, and concentrate) makes me feel like shit. I guess I need to give myself more credit and not get so angry with myself. I can only do so much. I don't think I'm in any shape to be working in a full-time stressful/difficult accountant's job. One part of my job involved counting money infront of Policemen (who are in full gear). I had to count 17,000'ish the other day, with one stood behind me. I actually only had to count about 2,000 because we get packets of 5000 and if they're sealed I don't need to open them. Still though, with extreme anxiety (and some paranoia), you can imagine how this becomes difficult for me. When I'm driving, I get this odd feeling when I look in my interior mirror (at the car behind me). I know it's stupid, but knowing that doesn't help. Basically though, when I look and see the car behind me, it looks like the car is angry. I see it getting closer, and it's like I'm scared to look behind me. I know that sounds bloody ridiculous.

I read a good Kindle book recently (called 'The End of Social Anxiety'). I expect that book in my best chance out of that particular problem, but it's something that needs practice and time. My personal time is really lacking at the moment. I am loving badminton, if anything. That perked me up a lot last night. I also read a very, very good book by Sophie Hayes, called 'Trafficked'. It's worth reading just to see that things could be worse. It's a fascinating and gripping book. I can't say enough about it. I haven't made a YouTube video in a while, but when I do, that book will get a mention.

I'm going to read another book now. It's called 'Get some headspace'. It's meant to be good. Someone recommended it to me. It's about meditation. I know about meditation already. I remind myself to breathe slowly a deeply often, but I always like to learn more. My problem is letting things go. I come home from work on several days and just feel shit, because work was shit. Really, I should be enjoying my personal time. I've not helped myself in a way. I've been going to bed much later than I should. Around midnight, sometimes after. This was actually because of Trafficked, which I found hard to put down without feeling very angry (you'll see why if you read it yourself). I NEED to go to bed at 10pm, maybe 10:30pm. It just does not happen. I think my room is another problem. I'm surrounded by so many material things. So many books, DVD's and games. I want to do so much and I can't fit it all in. Sometimes I'll just end up online reading about Accutane, and then I feel worse, especially when I read negative comments about the drug. Of course, I agree with what people are saying, but I want to read things that give me hope.

I remember when I thought Hyaluronic Acid would be the cure (of at least some of them problems). I felt really hopeful, and as I started to take the tablets, I started imagining how great my life would now be. I was really disheartened when nothing happened. But it showed me something. It showed me that I could feel good. All I need is to allow myself to feel good. In a way, I think I've convinced my brain that I can't be happy unless I get better. Sometimes it's a self-fulfilling prophecy. When we say things like 'My life could have been great, but this drug's ruined everything' we put that statement in place and accept it as true. When really, it's not fact. It's an obstacle, of course, but we're not the only ones with problems.

We sometimes convince ourselves that our lives would have been perfect without having taken this drug. So many people are stressed and depressed. So many people aren't happy with their jobs, for example. Really, a job (or things that make you unhappy) creates an opportunity to see the good in life. As in, when we're not at work we should enjoy the good times more. If there wasn't any bad, we'd not think anything was particularly 'good'.

Nick Ryan -

I saw your post on the other discussion. I don't have seberro dermatitis (whatever it's called) but I know how you feel about looking older. I worry about what I'll look like in 10 years. I was on holiday 2 years ago and one of the Moroccans was surprised I wasn't my Dad's brother. My Dad looks pretty good for his age, but's he's 52. I'm only 21! I don't think I look that much older than I am, but I see people in their 30s with perfect, smooth skin. When I look in the mirror, I tend just to see my semi-pronounced frown lines and tired looking eyes. I think they're the things that make me (feel I) look older (not to mention they grey hairs that I notice at times). I assume people think I'm strange looking, and then when I see them look at me 'oddly' I ask myself if it's all in my head, and it makes me feel a little bit insane. But hey, I'm not insane. I'm just in a bad situation.

I usually just watch my face in the morning, using a natural soap. Then I put aloe vera on my whole face, just because I think Aloe vera is awesome.

I could say more, but I'm off to the cinema with my girlfriend. No idea what the film is we're seeing. My life seems to be a bit of a blur at the moment. I just try to go along with it. I can only wish that things will get better, and do my best to accept things as they are. I know the worst thing we can say is 'I wish I had of never taken that fucking horrible poison'. Because we have taken it. We'll be in a much more resourceful state if we're not always complaining and being negative. Easier said than done of course, but it's true.

One last thing.

I think any form of resistance is bad.

Resisting the present moment and how things are.

Resisting that we look and feel older, maybe.

Resisting what happened in the past.

Resisting feeling bad.

I think the best thing we can say to ourselves, like an affirmation, is 'I'll just let everything happen as it wants to' and then watch things happen without trying to change the things we don't like.

Sometimes I think I could be a fuckin' motivational speaker!

By the way, my book has sold 20 copies now... Hopefully it'll pick up and spread the word about this drug and how the FDA are a bunch of no-gooders.

Have a good weekend.

Hi Everyone.

I got a message on YouTube today, so I thought I better share it with you.

This is the second time I've heard of hormone replacement therapy being (at least part of) the answer.

"Hey man,

Stumbled upon some of your videos. Been where you are a few years back with side effects and stuff. Wanted to help point you in the right direction. Watching some of your videos I realize your getter close and closer to solving a lot of these issues. I like that you've started on the Primal Diet - probably the best choice. Check The Paleo Solution (theres a great podcast also).

Okay... So most of the issues your experiencing are very complex. Obviously as you've come to realize there is a lot of people suffering with issues online and tons of thoughts on how to get better using various diets, supplements, etc.. Theres no concrete evidence on how to correct these issues. Some great doctors who are treating people with problems from this drug are beginning to identify patterns in hormonal feedback loops though, which is very promising.

So, without going to in depth, here is what I recommend. Its great that you've started on blood work. However without a very skilled doctor to interpret the results your really stuck on being able to implement any real changes. I know your overseas however one the best doctors in the field is the US and typically accepts consultations over the phone. Although I would really suggest saving up and flying out to see him. Seriously, hold off on supplement expenses for a few months and do everything you can to see a great doctor.

Here is his site: www.allthingsmale.com

He has a great forum also. Typically all people discussing hormone replacement for a multitude of reasons, but quite a few accutane sufferers. http://www.musclechatroom.com/forum/forumdisplay.php?2-All-Things-Male

I'm 24 and have been on testosterone replacement therapy now for over 2 years. It takes a few months to get "tuned-up" with the proper dose, but the difference is night and day. For me, my thyroid wasnt an issue, although it can be in a lot of former accutane users. My experience has been incredible. Brain fog, sexual issues, anxiety, and depression have all been dramatically helped. Which is why I felt compelled to write to you. If you experienced such a remarkable change - which hopefully you will, I know you'll do the same.

Please check out this doctors site and forum. And contact me with any questions. He is super good about doing phone consultations prior to being a patient and there may even be doctors closer to you that can be recommended. One things for sure - dont waste your time at regular doctors, getting tons of labwork, and going from one endocronoglist to the next. Waste of time and money. Get the right doctor first!

As for the bowel problems. Heres whats worked best for me. By the way, glad your on magnesium - keep using it, that really helps make a difference. Cape Aloe was the biggest thing that helped. Its kind of a laxative, but doesnt cause extreme bloating and doesn't lead to dependency. L-Glutamine also is a good recommendation - which i heard you say you may start in one of your videos.

Thats a good place to start. Good luck man! Please get in touch if you have any questions."

Sounds fairly hopeful, though I can't see myself being able to keep going to America to see the Doc he mentions.

Stef

Hi Everyone.

I got a message on YouTube today, so I thought I better share it with you.

This is the second time I've heard of hormone replacement therapy being (at least part of) the answer.

 

"Hey man,

 

Stumbled upon some of your videos. Been where you are a few years back with side effects and stuff. Wanted to help point you in the right direction. Watching some of your videos I realize your getter close and closer to solving a lot of these issues. I like that you've started on the Primal Diet - probably the best choice. Check The Paleo Solution (theres a great podcast also).

 

Okay... So most of the issues your experiencing are very complex. Obviously as you've come to realize there is a lot of people suffering with issues online and tons of thoughts on how to get better using various diets, supplements, etc.. Theres no concrete evidence on how to correct these issues. Some great doctors who are treating people with problems from this drug are beginning to identify patterns in hormonal feedback loops though, which is very promising.

 

So, without going to in depth, here is what I recommend. Its great that you've started on blood work. However without a very skilled doctor to interpret the results your really stuck on being able to implement any real changes. I know your overseas however one the best doctors in the field is the US and typically accepts consultations over the phone. Although I would really suggest saving up and flying out to see him. Seriously, hold off on supplement expenses for a few months and do everything you can to see a great doctor.

 

Here is his site: www.allthingsmale.com

 

He has a great forum also. Typically all people discussing hormone replacement for a multitude of reasons, but quite a few accutane sufferers. http://www.musclecha...All-Things-Male

 

 

I'm 24 and have been on testosterone replacement therapy now for over 2 years. It takes a few months to get "tuned-up" with the proper dose, but the difference is night and day. For me, my thyroid wasnt an issue, although it can be in a lot of former accutane users. My experience has been incredible. Brain fog, sexual issues, anxiety, and depression have all been dramatically helped. Which is why I felt compelled to write to you. If you experienced such a remarkable change - which hopefully you will, I know you'll do the same.

 

Please check out this doctors site and forum. And contact me with any questions. He is super good about doing phone consultations prior to being a patient and there may even be doctors closer to you that can be recommended. One things for sure - dont waste your time at regular doctors, getting tons of labwork, and going from one endocronoglist to the next. Waste of time and money. Get the right doctor first!

 

 

As for the bowel problems. Heres whats worked best for me. By the way, glad your on magnesium - keep using it, that really helps make a difference. Cape Aloe was the biggest thing that helped. Its kind of a laxative, but doesnt cause extreme bloating and doesn't lead to dependency. L-Glutamine also is a good recommendation - which i heard you say you may start in one of your videos.

 

 

Thats a good place to start. Good luck man! Please get in touch if you have any questions."

 

Sounds fairly hopeful, though I can't see myself being able to keep going to America to see the Doc he mentions.

 

Stef

 

Hormone therapy is pretty much where I was headed as it seems the only way to get some real change. It seems like multiple areas have been damaged, and hormones, at this time, seem to be a good way to heal or 'regrow' these areas.

I am kind of discouraged about having to see a doctor to do this, because I highly doubt any GP would give someone testosterone without abnormal levels on a lab just on the off-chance it could help them with side effects. I guess we can go through this recommended doctor and see what he has to say about it, and hopefully we won't have to see him himself and he'll be able to recommend what we can do.

Thanks for the update, Indigo, and by the way: Angels and Airwaves = <3

I mentioned a few posts back I thought steroids would be more likely to offer a solution at this point.

So I'm in agreement with the general idea behind the recent testosterone posts. I have been tested for testosterone a few years back and levels were fine. I doubt that has changed. However there are other steroids. Some of the others are supposedly safer than testosterone. And for some people, testosterone alone may do it.

The problem with accutane is the damage is too system wide. Also there is very little knowledge of what exactly is going on with it. Sure, it fries oil glands permanently. Yes, it reduces DHT levels. But does it even stay in the system? Or just rip one to bits and then leave one's damaged body? The breadth of damage, and the oddness of it, means that for all practical purposed one has to 'build a new self' and not try to cure or repair to what was. Something like steroids fits the bill, at least as a general strategy if not the specifics.

THIS IS MY TAKE ON THE TELOMER MYTH IN RELATION TO ACCUTANE

Firstly i'd like to preface this by saying the problems people experience post accutane are often very similar from person to person....dry lips, dry eyes, peeling skin, joint pain, joint cracking, liver problems, hair loss, digestive problems, inability to gain weight, ibs, react badly to eating foods high in retinol etc

Now lets look at hypervitaminosis A and it's side effects : joint problems, liver damage, inability to gain weight, cracking at corner of mouth, skin peeling, hair loss, sensitivity to sunlight. We can see the pattern start to arise...for all intents and purposes it's the same thing.......although in truth....when you delve into it, it's more complex than that.

Retinol is stored in the liver...... when the liver is unable to store anymore..... it continues to store the retinol in the fat....... thats when the skin peeling, dry eyes, joint cracking starts to happen because vitamin A controls cell differentation. Retinoic acid isn't like retinol in the sense that it's not stored in the liver, but when the body is unable to remove it (ie zinc deficiency, weak glucuronidation, low bile flow etc) it has to store the retinoic acid in the fat.

Lipophilic toxins exert their side effects in different ways, mercury damages neurological function, it can cause major nervous system problems...tremors akin to epilepsy. Mercury is stored in the fat cells around the brain and the fat cells around the body in general. The problem with mercury happen's when the mercury gets into the circulation...you see the body will do what it needs to do to protect itself...it uses the fat as a last line of defence because it doesn't want these potentially dangerous toxins in the bloodstream. People with mercury toxicity can suffer severe side effects which all fall into very specific, very similar categories. They all have very similar side effects is what i'm trying to say. I'm using the analogy of mercury..but it could just as well be any other lipophilic toxin like radiation, dioxins or any other heavy metal. It really doesn't matter what it is, their side effects are highly specific to that substance and the effects it exerts on their body.

When we see two people with problems post accutane, you'll see that both have very similar, highly specific side effects.... bringing this back to mercury for a second..... someone with mercury toxicity will never have a problem eating foods with retinol in it, the reason why is because retinol has no relationship to mercury. But a person with mercury toxicity might react very badly to foods like fish (which contain mercury) Not only might they react badly to mercury containing foods, they might react badly to foods that contain high levels of chlorrophyll like chlorella or high alpha lipoic acid foods like eggs. These substances although they are not mercury itself, react to the mercury stored in the persons body. So it's not just about the substance..it's about the inter linking things that react to that substance...like alpha lipoic acid which draw's mercury out into the circulation.

Relating this back to accutane.....which is the point of the discussion in the first place....... I wanna start with a question and this is for the people that believe in the telomer theory. If the telomer theory was true..lets hypothetically say it did cause telomer shortening and changes the DNA on a cellular level.......then why do people react negatively to foods containing retinol?

To me that makes no sense and disproves this telomor theory entirely. What i personally believe to be the case is the body is unable to remove the retinoic acid for whatever reason and as a result stores the substance in our fat cells like any other lipophilic toxin, hence all the hypervitaminosis style side effects continuing years after use. When you eat liver or butter (any high retinol food) the body reacts very badly to it, because it's the retinol in the food that reacts to the excess retinoic acid stored in your body. Circulation boosting foods (chillies, garlic) do the same thing in as much as they push the retinoic acid into the circulation. Now your not reacting to the chillies per se...your reacting to the chillies ability to vasculate the blood.... which can push the stored retinoic acid back into the circulation. So just as with the mercury analogy..... your not only reacting to the foods that contain the substance, but your also reacting to foods that have an interlinking effect on the substance in question.

Also my second point is this.....if accutane categorically shortened telomer's and changed our DNA....then why do some people just walk away scott free after taking accutane with no side effects whatsoever? surely if that was true it would happen to all of us right? not just some of us.

In my opinion the people that walk away from accutane without any side effects....have bodies that fully removed the accutane from their system. Everybody has the uncomfortable side effects when taking the drug...side effects like severely dry skin, dry lips, facial redness etc...but after they stop the drug these side effects slowly diminish and eventually go away. Whereas some of us unfortunately are left with horrific side effects for years after treatment. These side effects will never go away unless the retinoic acid (accutane) is removed from the body. At which point the dry skin, joint pains, dry eyes etc would go away...and you'd be able to eat all foods without a problem.

I see a few posters talking about steroids and the possibility of them helping...what you've gotta realise is that steroids are removed via the same liver detoxification pathway as accutane (glucuronidation). So if you had problems with accutane, your more than likely gonna have problems with steroids. Steroids are also very dangerous drugs in there own right, they're highly toxic to the liver and can cause a myriad of side effects. The question you have to ask yourself is will this help my side effects? and the answer in my mind is no...... although of course it's your decision what you decide to do.

Chico, your speculation on retinoic acid has good points. I'm equally unpersuaded by the telomer-shortening idea.

I think the detox issue may be related to why it seems most of the major sufferers are men.

I think women can a) store more due to having higher fat, and more importantly they

b) menstruate. So possibly they rid themselves over time of the toxins from the drug.

The question regarding detoxing retinoic acid, if this is even partly true, how the hell to get it out of the system permanently? Jumping to the next supposed super-detoxer advertised by the health food industry just doesn't seem to help.

I question the idea that removing the assumed to be still present retinoic acid will actually repair the problem. There is no known way to remove it, so that is a pretty big problem right there. So far, cleanses of many different kinds are not working.

It could be the retinoic acid creates permanent damage to the cells, or skin, or some kind of lining such as the blood-brain barrier.

An example is that it's known accutane messes with something in the brain, thus the episodes of psychosis or suicide. That messed up function may not repair just because the retinoic acid is gone.

It's a nice idea to think if the retinoic acid is gone, the side effects are over.

Unfortunately I think some people may simply have an enzyme or some aspect of their body that removes most of the side effects. This could be through a bunch of different pathways. Genetics differ, and what people are doing pre- and post-accutane differ as well. That creates a lot of variables for why people may respond differently and some seem to heal afterwards, while others don't.

I have a pretty good idea of why accutane hit me so hard. But I have yet to find anything significant that has really brought me up to a regular level of functioning.

Regarding steroids, the only real way to know is to test it. I'm not personally worried about low doses of steroids. There is significant difference between people pushing huge doses to be bodybuilders and someone like myself who just wants to be well.

I haven't tried them yet though. I'm just thinking about it seriously because I'm at the end of the line of prospective solutions.

THIS IS MY TAKE ON THE TELOMER MYTH IN RELATION TO ACCUTANE

 

Firstly i'd like to preface this by saying the problems people experience post accutane are often very similar from person to person....dry lips, dry eyes, peeling skin, joint pain, joint cracking, liver problems, hair loss, digestive problems, inability to gain weight, ibs, react badly to eating foods high in retinol etc

 

Now lets look at hypervitaminosis A and it's side effects : joint problems, liver damage, inability to gain weight, cracking at corner of mouth, skin peeling, hair loss, sensitivity to sunlight. We can see the pattern start to arise...for all intents and purposes it's the same thing.......although in truth....when you delve into it, it's more complex than that.

 

Retinol is stored in the liver...... when the liver is unable to store anymore..... it continues to store the retinol in the fat....... thats when the skin peeling, dry eyes, joint cracking starts to happen because vitamin A controls cell differentation. Retinoic acid isn't like retinol in the sense that it's not stored in the liver, but when the body is unable to remove it (ie zinc deficiency, weak glucuronidation, low bile flow etc) it has to store the retinoic acid in the fat.

 

Lipophilic toxins exert their side effects in different ways, mercury damages neurological function, it can cause major nervous system problems...tremors akin to epilepsy. Mercury is stored in the fat cells around the brain and the fat cells around the body in general. The problem with mercury happen's when the mercury gets into the circulation...you see the body will do what it needs to do to protect itself...it uses the fat as a last line of defence because it doesn't want these potentially dangerous toxins in the bloodstream. People with mercury toxicity can suffer severe side effects which all fall into very specific, very similar categories. They all have very similar side effects is what i'm trying to say. I'm using the analogy of mercury..but it could just as well be any other lipophilic toxin like radiation, dioxins or any other heavy metal. It really doesn't matter what it is, their side effects are highly specific to that substance and the effects it exerts on their body.

 

When we see two people with problems post accutane, you'll see that both have very similar, highly specific side effects.... bringing this back to mercury for a second..... someone with mercury toxicity will never have a problem eating foods with retinol in it, the reason why is because retinol has no relationship to mercury. But a person with mercury toxicity might react very badly to foods like fish (which contain mercury) Not only might they react badly to mercury containing foods, they might react badly to foods that contain high levels of chlorrophyll like chlorella or high alpha lipoic acid foods like eggs. These substances although they are not mercury itself, react to the mercury stored in the persons body. So it's not just about the substance..it's about the inter linking things that react to that substance...like alpha lipoic acid which draw's mercury out into the circulation.

 

Relating this back to accutane.....which is the point of the discussion in the first place....... I wanna start with a question and this is for the people that believe in the telomer theory. If the telomer theory was true..lets hypothetically say it did cause telomer shortening and changes the DNA on a cellular level.......then why do people react negatively to foods containing retinol?

 

To me that makes no sense and disproves this telomor theory entirely. What i personally believe to be the case is the body is unable to remove the retinoic acid for whatever reason and as a result stores the substance in our fat cells like any other lipophilic toxin, hence all the hypervitaminosis style side effects continuing years after use. When you eat liver or butter (any high retinol food) the body reacts very badly to it, because it's the retinol in the food that reacts to the excess retinoic acid stored in your body. Circulation boosting foods (chillies, garlic) do the same thing in as much as they push the retinoic acid into the circulation. Now your not reacting to the chillies per se...your reacting to the chillies ability to vasculate the blood.... which can push the stored retinoic acid back into the circulation. So just as with the mercury analogy..... your not only reacting to the foods that contain the substance, but your also reacting to foods that have an interlinking effect on the substance in question.

 

Also my second point is this.....if accutane categorically shortened telomer's and changed our DNA....then why do some people just walk away scott free after taking accutane with no side effects whatsoever? surely if that was true it would happen to all of us right? not just some of us.

 

In my opinion the people that walk away from accutane without any side effects....have bodies that fully removed the accutane from their system. Everybody has the uncomfortable side effects when taking the drug...side effects like severely dry skin, dry lips, facial redness etc...but after they stop the drug these side effects slowly diminish and eventually go away. Whereas some of us unfortunately are left with horrific side effects for years after treatment. These side effects will never go away unless the retinoic acid (accutane) is removed from the body. At which point the dry skin, joint pains, dry eyes etc would go away...and you'd be able to eat all foods without a problem.

 

Hey Chico, this makes sense. How would someone detoxify their fat cells? I've been taking a milk thistle supplement for a while and I don't think its done anything.

So would the next step be fasting? Juice/water fasts?

Like most people in this forum I just have no idea what to do.

I don't know what the next step is.

I would like to feel like I'm working towards being poison free.

 

THIS IS MY TAKE ON THE TELOMER MYTH IN RELATION TO ACCUTANE

Firstly i'd like to preface this by saying the problems people experience post accutane are often very similar from person to person....dry lips, dry eyes, peeling skin, joint pain, joint cracking, liver problems, hair loss, digestive problems, inability to gain weight, ibs, react badly to eating foods high in retinol etc

Now lets look at hypervitaminosis A and it's side effects : joint problems, liver damage, inability to gain weight, cracking at corner of mouth, skin peeling, hair loss, sensitivity to sunlight. We can see the pattern start to arise...for all intents and purposes it's the same thing.......although in truth....when you delve into it, it's more complex than that.

Retinol is stored in the liver...... when the liver is unable to store anymore..... it continues to store the retinol in the fat....... thats when the skin peeling, dry eyes, joint cracking starts to happen because vitamin A controls cell differentation. Retinoic acid isn't like retinol in the sense that it's not stored in the liver, but when the body is unable to remove it (ie zinc deficiency, weak glucuronidation, low bile flow etc) it has to store the retinoic acid in the fat.

Lipophilic toxins exert their side effects in different ways, mercury damages neurological function, it can cause major nervous system problems...tremors akin to epilepsy. Mercury is stored in the fat cells around the brain and the fat cells around the body in general. The problem with mercury happen's when the mercury gets into the circulation...you see the body will do what it needs to do to protect itself...it uses the fat as a last line of defence because it doesn't want these potentially dangerous toxins in the bloodstream. People with mercury toxicity can suffer severe side effects which all fall into very specific, very similar categories. They all have very similar side effects is what i'm trying to say. I'm using the analogy of mercury..but it could just as well be any other lipophilic toxin like radiation, dioxins or any other heavy metal. It really doesn't matter what it is, their side effects are highly specific to that substance and the effects it exerts on their body.

When we see two people with problems post accutane, you'll see that both have very similar, highly specific side effects.... bringing this back to mercury for a second..... someone with mercury toxicity will never have a problem eating foods with retinol in it, the reason why is because retinol has no relationship to mercury. But a person with mercury toxicity might react very badly to foods like fish (which contain mercury) Not only might they react badly to mercury containing foods, they might react badly to foods that contain high levels of chlorrophyll like chlorella or high alpha lipoic acid foods like eggs. These substances although they are not mercury itself, react to the mercury stored in the persons body. So it's not just about the substance..it's about the inter linking things that react to that substance...like alpha lipoic acid which draw's mercury out into the circulation.

Relating this back to accutane.....which is the point of the discussion in the first place....... I wanna start with a question and this is for the people that believe in the telomer theory. If the telomer theory was true..lets hypothetically say it did cause telomer shortening and changes the DNA on a cellular level.......then why do people react negatively to foods containing retinol?

To me that makes no sense and disproves this telomor theory entirely. What i personally believe to be the case is the body is unable to remove the retinoic acid for whatever reason and as a result stores the substance in our fat cells like any other lipophilic toxin, hence all the hypervitaminosis style side effects continuing years after use. When you eat liver or butter (any high retinol food) the body reacts very badly to it, because it's the retinol in the food that reacts to the excess retinoic acid stored in your body. Circulation boosting foods (chillies, garlic) do the same thing in as much as they push the retinoic acid into the circulation. Now your not reacting to the chillies per se...your reacting to the chillies ability to vasculate the blood.... which can push the stored retinoic acid back into the circulation. So just as with the mercury analogy..... your not only reacting to the foods that contain the substance, but your also reacting to foods that have an interlinking effect on the substance in question.

Also my second point is this.....if accutane categorically shortened telomer's and changed our DNA....then why do some people just walk away scott free after taking accutane with no side effects whatsoever? surely if that was true it would happen to all of us right? not just some of us.

In my opinion the people that walk away from accutane without any side effects....have bodies that fully removed the accutane from their system. Everybody has the uncomfortable side effects when taking the drug...side effects like severely dry skin, dry lips, facial redness etc...but after they stop the drug these side effects slowly diminish and eventually go away. Whereas some of us unfortunately are left with horrific side effects for years after treatment. These side effects will never go away unless the retinoic acid (accutane) is removed from the body. At which point the dry skin, joint pains, dry eyes etc would go away...and you'd be able to eat all foods without a problem.

 

 

Hey Chico, this makes sense. How would someone detoxify their fat cells? I've been taking a milk thistle supplement for a while and I don't think its done anything.

So would the next step be fasting? Juice/water fasts?

Like most people in this forum I just have no idea what to do.

I don't know what the next step is.

I would like to feel like I'm working towards being poison free.

 

This is exactly what I'm thinking. If you truly do believe it's a problem with our bodies not being able to get rid of the substance, how do we answer that? And if you're wrong and it is just damage done and certain people were affected more than others for whatever reason, a safe, controlled administration of a certain /kind/ of prohormone or "steroid" could be just what the doctor ordered.

I also personally disagree with the telomere theory.

Similar to what Chico is saying, it seems to me that Accutane causes the paradoxical situation of both hypervitamin A and hypovitamin A. The symptoms of both are very similar. It cannot utilize dietary Vitamin A / Retinol because of a 'blocked' receptor.

I think many of us avoid pre-formed retinol because we have assumed we have a Vitamin A toxicity. I think if we were to consume it, some side effects would worsen while others improve.

The only somewhat of a fix I can see is that it must come from the interaction of fat-soluble vitamins (A/D/K/E) and the thyroid. They all seem to work in a synergy. Other side-effects of Accutane may also need to be dealt with however such as increased inflammation, insulin-resistance, elevated homocysteine, biotin deficiency, hormone disruption etc

One way to deplete Vitamin A (Not sure if it work in a similar mechanism for Accutane) is through UVA and UVB exposure. This may be the route Lamarr is taking because I'm sure he mentioned that he used a UVB Lamp.

Just a study showing that someone actually benefited from supplemental Vitamin A while on Accutane:

http://www.ncbi.nlm....pubmed/10570558

Well, I do believe Chico's theroy. There are though some of us that are damaged bad and developed autoimmune type issues and have had lab work and such come back abnormal. With No family hx of theese diseases. Some develop problems after Accutane, I for one felt great while on it had minimal dryness, no pain, though I stoped when this funny string appeared, most of my sympotms didn't appear until 2-4 months After my Accutane use. 1 suffer who has suffered for 25 yrs. was great while on and after Accutane, then a 1yr later her back starting hurting she went to the Dr. only to be told her spine was that of a 80yr old.

I do believe that Accutane does damage on a cellular level also, now wether that has to do with Telemores/Telemeres I am not sure.

I believe Lamarr has he even posted about it changes dna as he suffers from Lupus pretty much. Yes, uses the lamps, he also didn't developed symptoms till a couple months after his Accutane course.

Interesting though also was one suffer Mod who was acutally deficent in Vit A after a while being off Accutane and I believe he could only tolerate it by being injected, otherwise his symptoms worsened. It took him many years, but finally got a dx with a autoimmune type intestinal problem, in which he couldn't gain weight for years, had to have a liquid diet etc.....

I don't really know, and there have been theories out there for years. I am sure most of you read or looked at Max's bio chem site on Accutane. All I know is that Accutane does strange things to one's body. But if there is a way to push this poision out of my body I am all for it.

By the way, I thought I'd update you guys briefly for now. I started back my biotin and my sugars levels dropped I still have to take 6 units of Lantus at night. My insulin was low in my blood and my cpeptide was low which is found in type 1 diabetics, hoping that this is not the case and temporary issue.

Hope everyone is doing well,

Jen

Oh and for my US fellows just a fyi! Another brand of Accutane has been approved for here in the US...The nightmare will never end. http://www.nbr.co.nz/article/nz-drugs-approval-us400-million-market-rm-108320

The thing is, for 5 solid months I took Chinese Bitters, Gold Coin Grass, Coptis and Curcuma, from end of last July to the end of December. I was very optimistic last summer when Chico /you said that retinoic acid being stored in the fat cells due to a down regulated biile flow/production was the cause to Accutane side effects. Buut after taking these liver/bile flow/production herbs, from SensibleHealth which everybody rates so highly, I saw absolutely no improvement whatsoever. I don't know what else I can do for bile flow/product, or the liver, as I gave these herbs such a long chance....

Surely although some side effects are like hypervitaminosis A, a lot of them aren't, aren't they? Surely there is a big difference between overdosing on standard vitamin A to cause hypervitaminosis A, then going through chemotherapy treatment, supposedly one of the most toxic things you can go through?? Do any treatment plans exist for patients that beat cancer but have been left with side effect of chemo?

Too many questions... and it DOES MY HEAD IN!!

I can't see HRT/steroids being the answer either. Is ayone really willing to trust man made medicine again and risk something that might be totally unrelated to the problem? HRT and steroids sound like.. very serious treatments...