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Repairing the long-term damage from Accutane

 
MemberMember
1753
(@truejustice)

Posted : 06/27/2018 6:43 pm

10 hours ago, marshl1 said:
I'm surprised that you didn't look into the vitamin A deplete diet more. It doesn't involve medication and there are two entire ebooks freely available explaining the theory.
There's a writer called Matt Stone who's really interested in the chronic vitamin A poisoning theory. Apparently he has quite a large following and he's going to be working to publicize the research presented in those ebooks. He's working with a nutritionist to devise a low vitamin A diet.
I've been doing it for about a month now. It's not that much time but I certainly feel better.
I don't understand why anyone suffering side affects from accutane wouldn't want to know more about this and actually want to give it a go and see what happens.

Thanks

Im surprised that more people arent following the 8 tips to help Accutane side effects
video that suggests the opposite- that you need to supplement liquid Vit A once youve gotten on top of the bile flow issues etc.

Whos right in all of this? You, me, someone else??

You could spend years trying the anti Vit A path and get nothing out of it. You could spend years doing the 8 tips route and get no effect...

Ive got no idea....stem cell therapy perhaps?

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MemberMember
1803
(@guitarman01)

Posted : 06/27/2018 7:38 pm

Dont waste your time.

Let me give some examples of a follow up from my last post.

BACTERIAL INHERITANCE LEADS RESEARCHERS TO RETHINK HEREDITY

BYDOUGLAS MAINON 2/19/15 AT 9:14 AM
http://www.newsweek.com/bacterial-inheritance-leads-researchers-rethink-heredity-307855

Now im jumping around here a bit, going back and forth. Im aware of this.
You see these gene mutations?
This might tell you what bacteria you may be lacking.
ive seen this in my own mutations.

VKORC1 rs2359612 and rs9923231 polymorphisms correlate with high risks of cardiovascular and cerebrovascular diseases
http://www.funpecrp.com.br/gmr/year2015/vol14-4/pdf/gmr6188.pdf

now lets dig a little further from what was just mentioned

https://www.sciencedirect.com/science/article/pii/S2305050016301257
Effect of black soybean natto extract (Glycine soja) on reproduction system of hypercholesterolemia male mice
Black soybean natto extract influenced on reproduction system of male hypercholesterolemic mice by increasing thetestosteronelevel and increasing the density and motility of sperm.
This is also a vitamin k producing bacteria.

There's also bacteria that produce carotenoids in the gut, right at the site of absorption.
same for b12, biotin, folic acid, digestive enzymes.
Microbes are also responsiblefor multiple metabolisms.
Things like glucose, heavy metals, cholesterol.
Bacteria can Also degrade a form of estrogen that is a powerful endocrine disruptor.
example.

Isolation and characteristics of 17beta-estradiol-degrading Bacillus spp. strains from activated sludge.
https://www.ncbi.nlm.nih.gov/pubmed/20135340

Did you know they discovered a fungus that eats plastic?

Something that is unexplored to me is individual probiotic strains.
even strains from the same genus can compete with each other.

Did you know the p.acnes bacteria might get its origins from the soil?
"Propionibacteria are commonly found inmilkand dairy products, though they have also been extracted from soil."

There is a probiotic that happens to not fall too far from the acne tree.
Propionibacterium freudenreichii.

So your looking at what gets knocked down, like p. acnes. and what went along with it.
your looking at knocking down bacteria along with fungus from isotretinoin.
But then what came back?
After or during treatment.

Id be curious about looking atubiome in some of us.
If and when I get these test results, I will be sure to share.

maybe in the future a bacterial or even fungal deficiency as it relates to human microbialswill be so much more important thanany vitamin deficiency as you can see just one strain can do so much more thana single nutrient.

So this is what I will be exploring for the near future.

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MemberMember
1753
(@truejustice)

Posted : 06/27/2018 9:07 pm

Guitarman,

Outside of your research, what are you taking these days?

What supplements etc?

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MemberMember
7
(@akos)

Posted : 06/27/2018 11:19 pm

On 6/23/2018 at 2:31 PM, marshl1 said:

Im pretty sure he's talking about vitreous floaters and I have them post accutane too along with photophobia and dry eyes.

@marshl1Did you have dry eye and photophobia during the intake or after it? If it is the latter, how much later did you notice the symptoms?

How is your photophobia? Just the sunlight or you have problems with computer screens and TVs?

On 6/23/2018 at 8:10 PM, TrueJustice said:

Yep - thats me too, esp The photosensitivity!!

@TrueJustice

How is your photophobia? Just the sunlight or you have problems with computer screens and TVs?

Do you also have dry eyes? Other eye physical symptoms?

@marshl1and @TrueJustice

I found out that I have eye floaters when I began feeling the photophobia and the dry eye symptoms, just because I was more conscious about my eyes. And I noticed them when I saw a white surface. That is the only way I can see them, they never bother me. I think eye floaters are very common, I couldnt say they were caused by Accutane, probably not.

How do you know yours were caused by Accutane? Are they obvious and you didnt see them before Accutane?

On 6/21/2018 at 4:13 PM, Benjamin94 said:

Treatment: Isotretinoin60mg OD on week 10.

@Benjamin94 Are you taking Accutane NOW?

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MemberMember
7
(@akos)

Posted : 06/27/2018 11:49 pm

On 6/24/2018 at 8:59 AM, HideAndSeek said:

So my question is: does anyone know if over the counter Retinol (not Tretinoin) goes in your bloodstream or there are any risks of side effects? I dont want to do any further damage.

@HideAndSeekAfter Accutane I noticed that my eyes were gradually drier, and I was not able to use contact lenses any more. But I began my serious dry eye and photophobia when I was using isotretinoin in gel. I used it for like 6 weeks, because of a breakout, probably induced by some supplements and a drug. After that I quitted the gel and all I was taking. I never used an acne gel again, because I dont need it, thanks to Accutane.

I dont know if isotretinoin in gel had something to do with my sudden eye worsening. Maybe it was a combination of things.

I dont know if the gel goes to the blood, probably not, but I personally wouldnt like to be close to this drug again.

Be careful with your eyes. Do you have a lot of acne? Dont use anything, just dont touch your face and dont focus your attention on your acne. I guess you tried benzoyl peroxide?

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MemberMember
1753
(@truejustice)

Posted : 06/28/2018 2:38 am

Akos

I didnt have floaters before Accutane- got them on tane or just after.

Just sensitivity to sunlight really, I can deal with lights inside etc.

Yes I get dry eyes, my sight is ok and has recently been tested - all good.I dont take anything for dry eyes though, dryness for me isnt a major problem. Skin dryness- thats a whole other story....

Im open to correcting floaters should anyone know how to do that??

GP once said to me, its just an age thing, I was like 26 at the time - no fucking idea about any connection to Accutane yet look how many victims state that they have this issue post treatment. The fucking clueless medical world....just fucking useless!!!!

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MemberMember
8
(@benjamin94)

Posted : 06/28/2018 4:47 am

2 hours ago, TrueJustice said:

The fucking clueless medical world....just fucking useless!!!!

But modern medicine did get rid of your acne. Accutane does work.

Again I would advise going onto a non-acne forum and reading the stories of all the other 20 year olds with health problems who never took accutane. Im afraid everything does go down hill from 18.

From now until the day you die, you are going to develop more and more health problems. Im just wondering are you going to blame them all on Accutane?

I agree its possible that your problems are due to the drug, but I hope you can open your mind to the possibility that theyre not and that you would have got them anyway even if you hadnt taken the drug.

I would also point out that these theories on the internet havnt helped you either - so theyre just as fucking clueless.

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MemberMember
1753
(@truejustice)

Posted : 06/28/2018 5:47 am

You know when youve been accutained, its completely different to regular aging issues, not even questionable.

Youre right it does work in terms of clearing up acne. I just didnt sign up to all this other shit. I also technically didnt have to go on this drug, at the end of the day it was my ill informed choice back in 1998 so I have to take responsibility for my part in all this.

The theories on internet are from people trying to work this shit out, Ill never point the finger at a victim trying to resolve a problem, at the very least they are talking about health issues related to a dangerous drug, hopefully that in of itself is enough to deter someone going on it - thats a positive contribution in my book!!

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MemberMember
8
(@benjamin94)

Posted : 06/28/2018 6:01 am

10 minutes ago, TrueJustice said:

You know when youve been accutained, its completely different to regular aging issues, not even questionable.

Im sorry but thats not a rigorous argument.

Do you know how common Depression is in the early 20s. At my Uni, I was once told by a tutor that 1 in 4 of his students were on antidepressants.

Likewise google Delayed Wound Healing - see how many people complain about this on internet forums.

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MemberMember
1753
(@truejustice)

Posted : 06/28/2018 6:42 am

Well at the end of the day we can debate things all we want, its not what Im looking to do.

Just show me how to get out of depression, show those uni students how to get out of their depression without medication!!

I just want results, I dont have the energy to debate the causes, Accutane can bring on depression, fine - what do you do to fix it??

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MemberMember
10
(@marshl1)

Posted : 06/28/2018 9:28 am

10 hours ago, Akos said:

@marshl1Did you have dry eye and photophobia during the intake or after it? If it is the latter, how much later did you notice the symptoms?

How is your photophobia? Just the sunlight or you have problems with computer screens and TVs?

@TrueJustice

How is your photophobia? Just the sunlight or you have problems with computer screens and TVs?

Do you also have dry eyes? Other eye physical symptoms?

@marshl1and @TrueJustice

I found out that I have eye floaters when I began feeling the photophobia and the dry eye symptoms, just because I was more conscious about my eyes. And I noticed them when I saw a white surface. That is the only way I can see them, they never bother me. I think eye floaters are very common, I couldnt say they were caused by Accutane, probably not.

How do you know yours were caused by Accutane? Are they obvious and you didnt see them before Accutane?

@Benjamin94 Are you taking Accutane NOW?

My vitreous floaters appeared after I took accutane for a second time. I only ever took low dose.
I also had LASIK and for a long time I put my eye symptoms down to that. Now i'm pretty sure it was accutane.

Both eyes are filled with floaters, I know they won't get better but i've looked into the possibility of a Floaters Only Vitrectomy in the USto have them removed. The photophobia occurs mainly when looking at tv or computer screens. The floaters are more bothersome outside. My eyes have been extremely dry and i've suffered headaches and sinus issues for the last 4 years.

That said im doing a lot better lately. The floaters aren't going anywhere but they are bothering me less.

Lee

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MemberMember
8
(@benjamin94)

Posted : 06/28/2018 11:40 am

@DevolutionIm sorry that Ive upset you. It wasnt my intention. The problem with the internet is that it can only communicate words, rather than delivery and manner.

I am not a massive fan of psychotropic drugs and I acknowledge that sexual dysfunction is a classic side effect of SSRIs and is particularly upsetting for men. Sertraline is the softest of them as well, so its a shame that it effected you so badly.

People dont talk about mental health. Its a taboo subject. But Depression is so common. 25% of GP appointments are people going about mental health or psychosomatic problems. People hide it and hide it well, but it is real and were not great at treating it.

I have Depression also and I have Chronic Functional Diarrhoea (a Functional GI Disorder - Functional is another word for psychosomatic). My GI issues get worse every time my mental health gets worse. I had these long before I started taking accutane, but my Depression has exacerbated whilst on Accutane. I have never taken SSRIs and I hope that it never gets bad enough that I need to. I personally would only take them if i was depressed to the extent that I was suicidal. Something that I find very helpful for Depression is going to saunas, spa pools, steams rooms, swimming, etc. These are usually quite cheap as well. I would really advise you try them.

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MemberMember
7
(@akos)

Posted : 06/28/2018 11:58 pm

@marshl1

LASIK and Accutane both could be the culprit of your eyes problems. Maybe a combination of both. But probably LASIK had nothing to do, as you noted.

So the sunlight doesnt bother you too much? That is curious. I mean, the fact that computer screens bother you and not the sun. You dont use dark glasses outside?

It seems that your eyes are drier than mine, but with less photophobia. This is something I still dont understand completely. Photophobia is not proportional to eye dryness, not at all. In fact, most people with dry eyes dont have photophobia, even the worst cases. But, inversely, according to an article I read, dry eye is the most common cause of photophobia. The fact is that medicine science is clueless about this topic, and they admit it. There must something that is not being considered that should explain photophobia.

It is not impossible that photophobia is caused merely by eye strain, added to dryness. To find out this, I should rest radically my eyes for some weeks, without using the computer not for a single minute, to see if I notice a cumulative improving in the long term. But maybe photophobia is present when there is a specific problem with the lipid layer, not the aqueous one, or with the mucin one. Or it is about some other particularity we dont know yet.

I use dark glasses outside, and I was not able to look normally at screens anymore. I reduce the contrast and brightness, I configure Windows to change the white backgrounds for black ones, I use a software orange tint (Windows 10 have one incorporated), I use dark glasses, not too dark, just a bit And when I am at home and must use the computer for more than half an hour or watch a movie, I see the image projected with an HD projector, which obviously is more expensive, and I have to change the lamp when it is burned. But, well right now, I couldnt live without a projector, dark glasses, a lubricant gel for my eyes and a lot of patience and discomfort tolerance.

@TrueJusticeThanks for the reply.
Maybe your sunlight sensitivity is a consequence of your mild dry eyes. Take care of your eyes, dont strain them too much, be careful with direct wind in your eyes, dont take drugs that might dry them, etc.

19 hours ago, Benjamin94 said:

But modern medicine did get rid of your acne. Accutane does work.

I guess you are a medical student. Will you be a Dermatologist?

Are you really taking Accutane? With all due respect, unless you have a very good reason to do so, I would say that you are confused, or you dont exactly know how the drug works, even if you think you do. This doesnt surprise me, considering that most doctors and people who take it dont know either.

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MemberMember
1753
(@truejustice)

Posted : 06/29/2018 1:43 am

On 6/26/2018 at 11:15 PM, 278Paulina said:

Sorry for not posting it earlier. Here is thelink [Edited link out]. Take a look at the last 2 posts. I also registered to the forum linked in the posts and I found that one person followed the regime and saw some good results. I'm also wondering, due to hormonal differences between sexes, if there is a chance that it might work for women too. Please share any thoughts.

Anyone know much about Sodium Butyrate??

just another supplement? and why would this guy choose it? not sure if anyone can shed some light here....

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MemberMember
8
(@benjamin94)

Posted : 06/29/2018 12:45 pm

@DevolutionEDS is a genetic condition which youre born with and some forms are extremely dangerous. They do have incredibly stretchy skin and hypermobile joints. If you do have hypermobile joints and are concerned - you should talk to your doctor.

The tummy lines are normal. Everyone gets those.

On your hand - you have eczema. Have you tried a moisturizer? Shop around - try different ones - until you find one that works.

Fun Fact - Severe Recalcitrant Hand Eczema can be treated with one of Accutane s less famous brothers called Alitretinoin (a joke - yours is no where near severe enough for this).

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MemberMember
0
(@abi72)

Posted : 06/29/2018 4:13 pm

On 6/27/2018 at 9:33 PM, Dubya_B said:
Hi Benjamin.

Not sure if you are aware of this, but Accutane has been shown to decrease mRNA expression and metabolic activity of the 5-alpha reductase enzyme. This enzyme produces neurological steroids that are vital in maintaining both mood and sexual appetite.

Nearly all categories of depression are associated with lowered neurosteroid levels and one of these, allopregnanolone, is currently in clinical trials to treat severe postpartum depression.

So, I have to argue that it is better explained as an altered neurological biochemistry than psychosomatic. That's just a fighting word around these parts.

There are also many who experience severe ED after Accutane with no comorbid depression.
If you really want tangible evidence of Accutane causing bodily harm, then try cross-referencing information on isotretinoin and carotid artery thickening, decreased ovarian reserve, premature epiphyseal closure, rhabdomyelosis, thyroid gland atrophy, and meibomian gland destruction. Pretty solid stuff.

btw- Carotid artery thickening is a sign of atherosclerosis, which is strongly associated with ED. Maybe that's why I also had high blood pressure at 18 years old, after taking Accutane?

.

Dubya - Ben's actually on Accutane at the moment. Not digging him out but I don't think he knows what he is letting himself in for yet!

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MemberMember
0
(@abi72)

Posted : 06/29/2018 4:15 pm

https://www.quora.com/Should-I-take-Accutane-Is-it-safe
what the professional are saying is so uneducated.
Kudos to Mark Dunn though! https://www.quora.com/Should-I-take-Accutane-Is-it-safe
what the professional are saying is so uneducated.
Kudos to Mark Dunn though!

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MemberMember
359
(@dubya_b)

Posted : 06/29/2018 9:12 pm

On 6/27/2018 at 6:04 PM, Benjamin94 said:

Hi Dubya

Whilst Premature Epiphyseal Plate Closure and Meibomian Gland Dysfunction are at present recognised side effects.

Carotid Artery Stenosis, Rhabdomyolysis and Thyroid Disease are not. 

Most cases of Hypertension are at present idiopathic (i.e. we still don™t know what goes wrong). Many doctors speculate its a problem with autonomic control of vasomotor tone. So again we™re back at a problem with CNS functioning. 

Hypertensive at 18 definately requires investigation for secondary causes however, which I hope you™ve had.

I havn™t read studies about Isotretinoin and 5-AR, but that certainly sounds a plausible theory for how it could lead to Depression (i.e. through down regulation of 5-AR within the brain, leading to decreased DHT synthesis within the brain). I also accept your point that reduced DHT synthesis within the brain could directly reduce libido independently of it causing depression. I respect this as a decent theory. We™ll see if it leads anywhere over the next 10 years.
 

Recognized side effects according to whom? Who or what decides this? Would you refuse to report an adverse reaction because it is not a recognized side effect?

If  a patient sought your help during, or soon after, a course of Accutane with complaints of weakness, fatigue, and muscle pains, would you refuse to report this despite prospective longitudinal studies showing extremely elevated creatine kinase levels in many patients during treatment, simply because myopathies are not recognized?

Apply the same theme to an Accutane patient in your care with fatigue and elevated TSH, or who suddenly developed hypertension after initiating treatment.

Just making a point.

From my perspective: I had no symptoms of ill health prior to Accutane with the exception of seasonal colds and flus. Start Accutane and start to feel as if I was being poisoned within the first 2 weeks, including back pains, fatigue, shitting blood for the first and only time in my life, mild depression, a sensation of overheating, and lowered libido. Stop the drug and feel better after a few months. Start a second course and begin to feel as if I am being poisoned in the same way. Stop, begin to feel better again, then BAM! A few weeks later went back to feeling poisoned and went through what I can only liken to descriptions of extreme menopausal symptoms, with night sweats, hot flashes, loss of feeling in my penis and total impotence, cracking joints and horrid muscle pains, falling-asleep-standing fatigue, and total loss of positive and negative emotion.

The worst of this occurred as I watched my acne almost completely clear over a couple weeks.

...And around 50 doctor visits later, and probably $100,000 worth of tests (Around $10k-$15k out of pocket).... Absolutely nothing is wrong except idiopathic hypertension and some "lowish" testosterone levels that resolved over time. Limiting salt to < 2,000 mg/day keeps me in pre-hypertensive range, but doesn't explain why this suddenly developed.

Challenge, rechallenge, and permanent side effects.

We are told the mechanism of action is unknown, yet told adverse reactions are not caused by the drug because there is not a clear pathology.

 

5 hours ago, Devolution said:
Yeah that's pretty much what i got told, nothing is permenant etc etc :(

How long are you post accutane @hatetane

You forgot about the benefits! The benefits of Accutane can be permanent, any adverse effect cannot be. Makes sense.

 

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MemberMember
10
(@marshl1)

Posted : 06/30/2018 2:43 am

On 6/29/2018 at 5:58 AM, Akos said:
@marshl1

LASIK and Accutane both could be the culprit of your eyes problems. Maybe a combination of both. But probably LASIK had nothing to do, as you noted.

So the sunlight doesnt bother you too much? That is curious. I mean, the fact that computer screens bother you and not the sun. You dont use dark glasses outside?

It seems that your eyes are drier than mine, but with less photophobia. This is something I still dont understand completely. Photophobia is not proportional to eye dryness, not at all. In fact, most people with dry eyes dont have photophobia, even the worst cases. But, inversely, according to an article I read, dry eye is the most common cause of photophobia. The fact is that medicine science is clueless about this topic, and they admit it. There must something that is not being considered that should explain photophobia.

It is not impossible that photophobia is caused merely by eye strain, added to dryness. To find out this, I should rest radically my eyes for some weeks, without using the computer not for a single minute, to see if I notice a cumulative improving in the long term. But maybe photophobia is present when there is a specific problem with the lipid layer, not the aqueous one, or with the mucin one. Or it is about some other particularity we dont know yet.

I use dark glasses outside, and I was not able to look normally at screens anymore. I reduce the contrast and brightness, I configure Windows to change the white backgrounds for black ones, I use a software orange tint (Windows 10 have one incorporated), I use dark glasses, not too dark, just a bit And when I am at home and must use the computer for more than half an hour or watch a movie, I see the image projected with an HD projector, which obviously is more expensive, and I have to change the lamp when it is burned. But, well right now, I couldnt live without a projector, dark glasses, a lubricant gel for my eyes and a lot of patience and discomfort tolerance.

@TrueJusticeThanks for the reply.
Maybe your sunlight sensitivity is a consequence of your mild dry eyes. Take care of your eyes, dont strain them too much, be careful with direct wind in your eyes, dont take drugs that might dry them, etc.

I guess you are a medical student. Will you be a Dermatologist?

Are you really taking Accutane? With all due respect, unless you have a very good reason to do so, I would say that you are confused, or you dont exactly know how the drug works, even if you think you do. This doesnt surprise me, considering that most doctors and people who take it dont know either.

@AkosIm really sorry to hear about the condition of your eyes and a lot of what you say sounds very familiar to me. Like I said for a long time I blamed the LASIK procedure for my symptoms. Having surgery on your eyes is a very unnatural thing and the psychological impact of this was huge for me since my eyes never felt healthy post surgery. That said it was explained to me many times that this surgery takes place on the outer surface of the eye only. Vitreous floaters occur inside the eyeball which isn't effected by LASIK.
Because i've had this surgery my eyes have been observed extensively by professionals. I was followed up many times and I have paid for second and third opinions by several ophthalmologists in London UK where I live. I don't believe my floaters were caused by the surgery.
Dryness is more common after LASIK but people rarely get photophobia especially long lasting photophobia.
I had some dryness even before I had the surgery or took accutane just simply from wearing contact lenses but I never had photophobia. This dryness never bothered me.
Anyway i'll try and make some meaningful point about this. I believe that Accutane just like high dose vitamin A is extremely damaging for the eyes and I believe it damaged my eyes.
There is a huge point of contention which in my opinion is central to this Accutane side effect debate and it is to do with vitamin A. 99.9% of people will tell you that vitamin A is essential to life and essential for eye health. After reading the research of Grant Genereux I think this is completely false. I highly recommend you read his ebooks.
A quick example concerning the eyes and vitamin A (btw once in the body vitamin A is converted to retinoic acid a molecule very similar to 13-cis-retinoic acid which is accutane, it makes sense to me that they work in a very similar way to poison the body), in the medical literature the symptoms of chronic hypervitaminosis A and vitamin A deficiency are the same, how can that be?
I have many of the symptoms of chronic hypervitaminosis A from taking Accutane and my eye symptoms are just some of them.Accutane took my body to dangerous levels of toxicity and by continuing to consume Vitamin A I have been maintaining these dangerous levels which explains why a lot of my symptoms are relapsing - remitting (they come and go).
The current research on vitamin A says that it is essential to eye health but my it was a retinoid that caused the damage to my eyes in the first place. The point is that I shouldn't be able to remove this from my diet without this causing some further damage to my eyes if you believe the current research but I have massively reduced my vitamin A consumption over the last 6 weeks and i am absolutely fine. Grant Genereux has been on a zero vitamin A diet for 4 years and his eyes are perfectly healthy. In fact this zero vitamin A diet has resolved many very serious health issues that he was suffering from. He has also carried this experiment out on his pet rats who's eyes look in perfect health, shiny and moist. He also uses photographs of survivors from the Dachau concentration camp to make the same point. These poor people are obviously extremely emaciated. They have consumed zero vitamin A but you can see that there eyes are also in perfect health. There eyes are showing no signs of so called Vitamin A deficiency. How can this be the case if Vitamin A is essential to eye health?
Anyway I think I've made my point.
I feel your pain and I genuinely want to help. What is life without healthy eyes. If you believe Accutane caused this damage to your eyes then I believe avoiding vitamin A will go a long way to allowing your eyes to heal.
You should also get your meibomian glands checked for blockages. Don't take fish oil it's extremely high in vitamin A. A hot wet cloth compression for 5 mins in the morning whilst deep breathing can help. I actually have some rather expensive steam eye goggles which i've only used a couple of times. It's called Blephasteam. If you think it will help you and you want it you can have it. Just let me know and i'll see if I can send it to you.
Sorry this post wasn't supposed to be so long but I can't stand to see people suffering if I think I can help.

All the best,
Lee

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MemberMember
8
(@benjamin94)

Posted : 06/30/2018 2:47 am

5 hours ago, Dubya_B said:
From my perspective: I had no symptoms of ill health prior to Accutane with the exception of seasonal colds and flus.

But you did have severe acne, so your health wasnt perfect before taking this drug. I say this to you just to prove the point that your body isnt infallible - it can break without accutane.

My source for recognized side effects is the BNF. If you google BNF, open the first link and then you can search for whichever drug you want to look up.

Ive never and will never say that your symptoms are not real.

To those saying that I dont know what Im doing taking this. I have acne all over my chest, back, shoulders and forearms. I watched it spread for years and didnt ask to take this drug, because I knew what this drug was. Only when Iit spread onto my forearms did I finally give up.

Its brothers Tretinoin and Bexarotene are used to treat APML and Cutaneous Lymphoma respectively. Believe me I do not underestimate Isotretinoin as a drug.

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MemberMember
1753
(@truejustice)

Posted : 06/30/2018 3:37 am

51 minutes ago, marshl1 said:
@AkosIm really sorry to hear about the condition of your eyes and a lot of what you say sounds very familiar to me. Like I said for a long time I blamed the LASIK procedure for my symptoms. Having surgery on your eyes is a very unnatural thing and the psychological impact of this was huge for me since my eyes never felt healthy post surgery. That said it was explained to me many times that this surgery takes place on the outer surface of the eye only. Vitreous floaters occur inside the eyeball which isn't effected by LASIK.
Because i've had this surgery my eyes have been observed extensively by professionals. I was followed up many times and I have paid for second and third opinions by several ophthalmologists in London UK where I live. I don't believe my floaters were caused by the surgery.
Dryness is more common after LASIK but people rarely get photophobia especially long lasting photophobia.
I had some dryness even before I had the surgery or took accutane just simply from wearing contact lenses but I never had photophobia. This dryness never bothered me.
Anyway i'll try and make some meaningful point about this. I believe that Accutane just like high dose vitamin A is extremely damaging for the eyes and I believe it damaged my eyes.
There is a huge point of contention which in my opinion is central to this Accutane side effect debate and it is to do with vitamin A. 99.9% of people will tell you that vitamin A is essential to life and essential for eye health. After reading the research of Grant Genereux I think this is completely false. I highly recommend you read his ebooks.
A quick example concerning the eyes and vitamin A (btw once in the body vitamin A is converted to retinoic acid a molecule very similar to 13-cis-retinoic acid which is accutane, it makes sense to me that they work in a very similar way to poison the body), in the medical literature the symptoms of chronic hypervitaminosis A and vitamin A deficiency are the same, how can that be?
I have many of the symptoms of chronic hypervitaminosis A from taking Accutane and my eye symptoms are just some of them.Accutane took my body to dangerous levels of toxicity and by continuing to consume Vitamin A I have been maintaining these dangerous levels which explains why a lot of my symptoms are relapsing - remitting (they come and go).
The current research on vitamin A says that it is essential to eye health but my it was a retinoid that caused the damage to my eyes in the first place. The point is that I shouldn't be able to remove this from my diet without this causing some further damage to my eyes if you believe the current research but I have massively reduced my vitamin A consumption over the last 6 weeks and i am absolutely fine. Grant Genereux has been on a zero vitamin A diet for 4 years and his eyes are perfectly healthy. In fact this zero vitamin A diet has resolved many very serious health issues that he was suffering from. He has also carried this experiment out on his pet rats who's eyes look in perfect health, shiny and moist. He also uses photographs of survivors from the Dachau concentration camp to make the same point. These poor people are obviously extremely emaciated. They have consumed zero vitamin A but you can see that there eyes are also in perfect health. There eyes are showing no signs of so called Vitamin A deficiency. How can this be the case if Vitamin A is essential to eye health?
Anyway I think I've made my point.
I feel your pain and I genuinely want to help. What is life without healthy eyes. If you believe Accutane caused this damage to your eyes then I believe avoiding vitamin A will go a long way to allowing your eyes to heal.
You should also get your meibomian glands checked for blockages. Don't take fish oil it's extremely high in vitamin A. A hot wet cloth compression for 5 mins in the morning whilst deep breathing can help. I actually have some rather expensive steam eye goggles which i've only used a couple of times. It's called Blephasteam. If you think it will help you and you want it you can have it. Just let me know and i'll see if I can send it to you.
Sorry this post wasn't supposed to be so long but I can't stand to see people suffering if I think I can help.

All the best,
Lee

What meat do you need to avoid on the anti Vit A diet?

I know about all the fruit and Veg containing Vit A

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(@marshl1)

Posted : 06/30/2018 5:46 am

2 hours ago, TrueJustice said:
What meat do you need to avoid on the anti Vit A diet?

I know about all the fruit and Veg containing Vit A

Obvious things to avoid are liver and organ meats and fish etc. This idea is breaking new ground. There isn't a diet plan or much information out there at the moment. I look up the vitamin A content of pretty much everything I eat, it's not easy and it's not fun. There are other people ie. nutritionists looking into this research and aiming to devise a diet plan. Grant Generaux eats an extremely limited diet. He only eats beef and venison, rice, cauliflower and a couple of other things. He claims this diet provides him with enough nutrition and close to zero vitamin A. I couldn't eat a diet thats so limited so I do my best. I've definitely felt a lot of the fatigue I was suffering from lift along with the brain fog. My eyes bother me less and im out running a lot without much joint pain.
It's early days..

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(@truejustice)

Posted : 06/30/2018 5:56 am

Fair enough

Ever thought that its not Vit A toxicity, that tane just passed through us and did the damage on the way?

Ever thought that it could be genome damage that we need to look into?

Just putting these questions out there that were raised a few pages back.

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(@marshl1)

Posted : 06/30/2018 6:22 am

25 minutes ago, TrueJustice said:

Fair enough

Ever thought that its not Vit A toxicity, that tane just passed through us and did the damage on the way?

Ever thought that it could be genome damage that we need to look into?

Just putting these questions out there that were raised a few pages back.

25 minutes ago, TrueJustice said:

Fair enough

Ever thought that its not Vit A toxicity, that tane just passed through us and did the damage on the way?

Ever thought that it could be genome damage that we need to look into?

Just putting these questions out there that were raised a few pages back.

I've thought about everything and tried many things. This is the theory that makes most sense to me

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(@benjamin94)

Posted : 06/30/2018 6:24 am

28 minutes ago, TrueJustice said:

Fair enough

Ever thought that its not Vit A toxicity, that tane just passed through us and did the damage on the way?

Ever thought that it could be genome damage that we need to look into?

Just putting these questions out there that were raised a few pages back.

Yes to the first point. No to the second point.

As I repeatedly keep saying - you can test for Vit A toxicity. You can have your blood Vitamin A level measured. If youre in the UK, you can check out Medichecks. If you're in another country - Im sure the equivalent exists.

I agree with you True Justice - It hits you whilst you take it and causes permenant changes. At the very least: reduced sebaceous output. If it was truly causing long term Vitamin A toxicity - then the teratogenic effect would be long term. But it is safe for women to get pregnant after 1 month of being off it.

As for Genome damage - what do you mean by this - mutations in the DNA? If so I strongly doubt it.

It obviously causes epigenetic changes. From what is known of the mechanism - it binds to the RXR nuclear receptor. So it changes gene expression, but actually changing the genes themselves - I doubt it.

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