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Repairing the long-term damage from Accutane

 
MemberMember
1804
(@truejustice)

Posted : 06/08/2018 10:52 pm

1 hour ago, Jason3 said:

Im not angry anymore, and I think that while anger is definitely justified, it closes ones mind and gets in the way of resolution. It ended up being a net positive for me. I have fixed my problems, and I started posting here to give some hope to others that relief is a possibility. I just had to unknowingly take poison and suffer for 20 years to get to this point. My health has drastically improved in the end. Its not fair, but I guess Ill take it.

I know what you mean by keeping anger in check but for me nah Im fucking pissed.

The fact that there is incompetence still at the highest level with doctors and specialist still not giving the correct into to patients is mind boggling to me

Knowing about lowered hormone levels etc since the 70s and not passing that info on etc - what can I even say.....

17 minutes ago, guitarman01 said:

For me Testosterone has not correlated with symptoms of muscular weakness or paralysis.
Just had it tested a couple days ago. im 35 btw.
Testosterone, Serum 581 ng/dL 264 - 916

Has anyone looked into prostatitis or had symptoms that could relate?
Maybe inflammation that spreads like a cancer.
sinuses,lungs, gi tract,mouth, bladder, brain.

symptoms of Prostatitis (dont wish it on my worst enemy) Feeling the need to urinate constantly even though you dont have to, pain in the the testicles and the entire pelvic region, a burning fire/ pain in the anus, almost complete loss of libido and serious ED problems.

Like me your levels seem ok, what about the signaling aspect though that Jason3 mentions?

That is the X factor in all this.

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MemberMember
39
(@mikez)

Posted : 06/09/2018 8:30 am

Thanks for the response!   Even in Australia,  those levels would likely be treated.  Glad you are feeling better.   Unfortunately,  my latest result (in Dec, age 33)  had my T levels at  640 ng/dl,  and being on nothing at the time,  my GP ceased providing even low dose HCG and pregnenolone (which were helping symptoms about 40% with no side effects),  as he doesn't want to 'suppress' anything.   

When you have symptoms of low T, but normal T , it becomes hard :(    I was so sure levels would come back bottom of normal, that I even had Clomid 'in stock' ready to go.  Never ended up taking any. 

I was given some hormones a while back (continued for a while by current Dr) as my levels were 400 ish at times in my 20s.    

 

23 hours ago, Jason3 said:
I was tested once by a family doctor and had s result of 224 ng/dL Total T, 7.6 ng/dL Free T and then referred to a urologist who tested a second time with a result of 153 ng/dL Total T, 6.1 ng/dL Free T. I was quite low.

The healthcare systems are increasingly only treating hormone deficiency for very low results and even then they generally do a terrible job treating while insurance carriers are refusing to cover medications. It doesn™t help that LabCorp revised their œnormal range downward last summer which makes it even more difficult. You would have much better luck going to private care. Private doctors are more progressive and not bound by limitations of coverage and reimbursement from insurance because they don™t accept insurance. They get paid by you going to them and you are only going to see them if they help with your problems. So it is in their best interest to actually help you feel well. They treat symptoms and not just numbers. You can find private doctors who will treat results of even 450-500 ng/dL if you are showing symptoms. There is a massive gap in being able to get treatment and have a good quality of life depending on which route you try to take. Search online and take the ADAM and IIEF5 questionnaires.

Private care scares people because it sounds like it is only for the wealthy. There are people who overcharge like anything else, but there are also good options and like I said above, I maybe pay an out of pocket average of $100-125 a month for medications and consultations. My blood tests are covered by my health insurance in full, but you can cash pay for blood tests at a discounted price if you need.

After suffering for 20 years, I™ve decided that my well-being and my health are worth that price. 

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MemberMember
1804
(@truejustice)

Posted : 06/10/2018 5:24 am

What meats do you have to avoid on the anti Vit A diet??

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MemberMember
120
(@pido)

Posted : 06/10/2018 11:47 am

Could you just get a blood test to find out do you have a excess of retinoic acid?

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MemberMember
1803
(@guitarman01)

Posted : 06/10/2018 12:57 pm

I would say the amounts of vitamin a are so small in the diet compared to what Accutane was (which might have equated to around 100k iu to 40 mg isotretinoin just looking at weights, but Accutane being a more potent version)
That avoiding vitamin a in the diet is pointless, minus eating liver.

I could also say that I could experimentally induce a lot of the Accutane side effects by taking the wrong supplements that are further agonists to Accutanes many possible modes of action.
And guess what it might have to do with Accutane at this point?
Absolutely nothing. Meaning Accutane might be long gone.

You can see a side effect profile or correlations with many drugs and supplements that have nothing to do with retinoids.
Maybe the fact that they might be a similar type of poison of you want to call it that, with a trickle down effect to the host organism or unavoidable damage or stress that the person must recover from.

Just a update, i've backed off of Bacillus based supplements for now as well, as they might be further antagonists like Accutane.

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MemberMember
10
(@jason3)

Posted : 06/10/2018 4:07 pm

4 hours ago, Pido said:

Could you just get a blood test to find out do you have a excess of retinoic acid? 

If you want to check your current "Vitamin A" levels, you can get a blood test for Retinol.

On 6/9/2018 at 9:30 AM, mikez said:

Thanks for the response!   Even in Australia,  those levels would likely be treated.  Glad you are feeling better.   Unfortunately,  my latest result (in Dec, age 33)  had my T levels at  640 ng/dl,  and being on nothing at the time,  my GP ceased providing even low dose HCG and pregnenolone (which were helping symptoms about 40% with no side effects),  as he doesn't want to 'suppress' anything.   

When you have symptoms of low T, but normal T , it becomes hard :(    I was so sure levels would come back bottom of normal, that I even had Clomid 'in stock' ready to go.  Never ended up taking any. 

I was given some hormones a while back (continued for a while by current Dr) as my levels were 400 ish at times in my 20s.    

 

Many doctors just look at total testosterone and they are done, just like they only look at TSH for thyroid. Total testosterone can be indicative of a problem so it is not to be ignored, but it's a "high score". What you really want to get into is free testosterone - that is the unbound testosterone in your body that you really feel.< 20 ng/dL is bad. And DHT is extremely important as well.

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MemberMember
39
(@mikez)

Posted : 06/10/2018 7:11 pm

11 hours ago, Jason3 said:
Many doctors just look at total testosterone and they are done, just like they only look at TSH for thyroid. Total testosterone can be indicative of a problem so it is not to be ignored, but it's a "high score". What you really want to get into is free testosterone - that is the unbound testosterone in your body that you really feel.< 20 ng/dL is bad. And DHT is extremely important as well.

Sorry I should have said I had extensive workups including Free T, etc.   I just didn't want to clutter and make the message too long by explaining all that.  My bad. :)   I had a DHT test once (as its uncommon and expensive here), and it came back smack in the middle of the range. 

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MemberMember
7
(@akos)

Posted : 06/10/2018 7:50 pm

3 hours ago, Jason3 said:

What you really want to get into is free testosterone - that is the unbound testosterone in your body that you really feel.< 20 ng/dL is bad. And DHT is extremely important as well.

Jason3,

Hi. Only your testosterone was low? And your DHEA? LH and FSH?

I only have low (out of normal range) DHEA. My testosterone is normal but maybe a bit low, though I cant know what were my level before Accutane. Do you know something about taking DHEA? What I know is that it is considered without side effects (but I also read that it could produce acne/increase sebum, like happened to you, which would make sense in relation to Accutane as inhibitor)

Low libido, fatigue, brain fog are symptoms of depression, more than they are symptoms of low testosterone. Were you depressed?

8 hours ago, marshl1 said:

I am now 4.5 months (133 days) of eating no vitamin A foods. I am feeling much better, but I have a long way to go. I am maybe 20% healed right now.

How are you feeling better?

You dont feel ostopenia.

And brain fog and depression are psychological, I doubt they are a consequence of Accutane, six years later.

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MemberMember
10
(@jason3)

Posted : 06/10/2018 8:57 pm

37 minutes ago, kos said:

Jason3,

Hi. Only your testosterone was low? And your DHEA? LH and FSH?

I only have low (out of normal range) DHEA. My testosterone is normal but maybe a bit low, though I can™t know what were my level before Accutane. Do you know something about taking DHEA? What I know is that it is considered without side effects (but I also read that it could produce acne/increase sebum, like happened to you, which would make sense in relation to Accutane as œinhibitor)

Low libido, fatigue, œbrain fog are symptoms of depression, more than they are symptoms of low testosterone. Were you depressed?

 

How are you feeling better?

You don™t feel ostopenia.

And brain fog and depression are psychological, I doubt they are a consequence of Accutane, six years later.

My LH and FSH were well into normal ranges indicating primary hypogonadism.

DHEA is a precursor to your sex hormones. It is needed in fact for your body to make them. Supplementing DHEA works for some but not others. For me, it eliminates any anxiety I have, but some report a very strong libido with supplementation. Others report worsening anxiety and libido with supplementation. DHEA is also estrogenic in men which means that it will typically cause an increase in estrogens (Estradiol) more so than an increase in testosterone. In women it works in the opposite way - more testosterone than estrogen is created by supplementing DHEA. DHEA naturally declines with age after about age 25. I have attached a (simplistic) diagram showing how these hormones are created in the body.

My DHEA was 211 whereas 450-600 is usually optimal depending on the individual. I take 25mg twice a day and that puts me around 550. I would only take it if your lab results indicate you are low or at the bottom of the normal range and I would also start low around 12.5-25mg daily to see if it does anything for you. It is available over the counter and I just buy it from Amazon. Jarrow makes high quality supplements. 

As far as symptoms I have to disagree. Low libido, fatigue, "brain fog" and even depression are all telltale signs of someone with low testosterone. They are also telltale signs of many other problems as well however. I don't think that those symptoms are caused by Accutane itself years after its discontinuation. The half life of isotretinoin is pretty short and that would be impossible. But I do absolutely think that they are symptoms of downstream problems that Accutane causes in some who have taken it.

I do not have depression. Physically my body has changed and improved a lot from all of the testosterone that I take. But I do take a lot and I have to take it every day whereas many TRT patients get by on a single weekly injection. I'm saying you would have no idea that I take a high dose by looking at me. It has very little anabolic effect on my body. Something seems to interfere with that process. In my previous posts I mentioned how my DHT also seems to have a low "set point" no matter how much testosterone I take. I have to force it to go higher and that's when I feel truly great.

 

steroidogenesis.jpg

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MemberMember
7
(@akos)

Posted : 06/12/2018 7:41 pm

On 6/10/2018 at 10:57 PM, Jason3 said:

In my previous posts I mentioned how my DHT also seems to have a low "set point" no matter how much testosterone I take. I have to force it to go higher and that's when I feel truly great.

Jason3,
 

Thank you for the response.

I don™t know this DHT, I think my blood tests never looked for its level. And¦ how do you force it to go higher?

I attach some values of my tests. It seems that the labs use different units, so you have to see the units. And between brackets there is the normal range, according to the labs. Lab 2, apparently, measures Free T very different from Lab 1.

5b2065e9d99f7_bloodtests.thumb.JPG.8157500928001c0baa483fb37c03c176.JPG

 

According to your knowledge, do you think my testosterone is low? Yes, my total T is normal, and it has increased since my first test. But Free T and Bio T are somehow low¦?

Well, you are not depressed now, but before taking testosterone, when you realized you had low libido?

According to my experience, depression doesn™t cause low libido by itself, you just feel very bad and you don™t want to do anything. If it is intense, it could lower libido or not, depending on the worries of the particular person. In most cases it is a subjective and psychological pathology, not reducible to any physical pathology.

Of course, I suppose low testosterone by itself reduces libido. And also there are a lot of cases that would proof that Accutane can reduce the activity of certain glands, even after its discontinuation.
 

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MemberMember
158
(@accuity_drane)

Posted : 06/12/2018 9:01 pm

On 6/10/2018 at 5:58 AM, kjkjkj2 said:

The website explains that Accutane is vitamin A, which is a fat soluble and stored in the liver.

Can you please provide a source that retinoic acid specifically can be stored in the liver for long periods of time? Accutane is a metabolite of Retinol (vitamin A) known as 13-cis-retinoic acid. The body cannot convert retinoic acid back to retinal or retinol. The half-lives of retinoic acid and their associated metabolites are under 30 hours (Wiegland, 1998).

I read the ebook and wrote my all my disagreements to the author. All due respect, I believe the book is nonesense. I will provide several reasons here, aside from the possible glaring pharmacological error in assuming Accutane stays in the body for years. :D  The author's main premise is that vitamin A is a blanket toxin that is at the root of almost all auto-immune disease. If that is true, he must explain the following:

1. Why do people with IBD show low vitamin A levels? Even if it is the disease causing the deficiency, shouldn't this be advantageous for symptoms? How come people with Chrohn's can be completely emaciated and still show symptoms?

2. If vitamin A is simply a toxin, why does it show efficacy for treating a lung disease?

3. Why is Accutane-induced night blindness helped by vitamin A supplementation? (Well, I can speculate why. Accutane actually interferes with some aspects of vitamin A metabolism due to the large doses of one particular metabolite being supplemented at the expense of everything else.)

4. Why is Accutane induced depression helped by vitamin A supplementation? Danby FW. Oral isotretinoin, neuropathy and hypovitaminosis A. Clin Exp Dermatol. 2008;33(2):190. (Again, I can speculate an answer. Of note, I see these types of anecdotes on my Accutane group too.)

5. The author argues that autoimmune diseases look a lot like hypervitaminosis A and that this is evidence it is the vitamin A is directly causing symptoms. The author must explain how drugs like prednisone, Humira, and topical creams help calm symptoms. Where does this vitamin A go during this symptom relief? Is it literally neutralized?

6. One of the arguments put forth is that liver growth with age helps fend off sub-clinical hypervitaminosis as we age. He uses this idea to explain why kids get Autism and eczema and elderly people get Alzheimer's. Specifically, he focuses on the fact that eczema is common in the very young (small livers) and then again in those age 50+ (those with stagnated livers). This is a bizarre point to me. What about autoimmune illnesses that are commonly developed in those who are in their 20s-30s? IBD? M.S.? How do you explain that?  Also, why do so many people never "outgrow" Autism? Perhaps the age of onset of these autoimmune illnesses have nothing to do with aging/expanding livers. . . . More broadly speaking, how is this theory remotely compatible with autoimmune illnesses that are intermittent/relapsing in nature? Also, through what mechanism would vitamin A (the one main cause of autoimmune illness) cause different autoimmune conditions at different ages? The real answer is that these conditions are much more complicated than the author lets on.

7. If vitamin A is at the root of autoimmune illness, how does this fit into the idea that microbial transplants can both cure and induce a number of autoimmune diseases in mice? Does bacteria make the liver grow or something?

8. He also misunderstands evolution by asking why the immune system behaves in such haywire ways during autoimmune illness if there is no physical reason to (e.g., active presence of vitamin A poisoning). Evolution does not lead to perfect organisms. It is more accurate to say natural selection weeds out traits that are detrimental to one's survival than it is to say natural selection selects for advantageous traits. This is not just semantics. Let me use a convoluted analogy. Let's pretend that when Tigers (for all intents and purposes) were "evolving," some evolved to have 30 pound tails and some evolved to have normal tails. Of course, the tigers with 30 pound tails would die off because it would hinder their ability to stalk prey. Now, if the surviving Tigers had some unnecessary trait such as wisdom teeth or an under-developed fifth leg that hardly hindered their ability to run, evolution has no mechanism to phase out these traits. And it wouldn't have a reason to. Why? Because these Tigers are still reproducing. Perhaps not all of them. Perhaps some of them incur infections from their "wisdom teeth" or are slightly impeded by their under developed limb. But if MOST Tigers are still able to reproduce with these traits, that's good enough for evolution. Some traits are "annoying" to an organism, but do not significantly hinder reproduction, so they stick around. Evolution doesn't care very much about quality of life.

9. The author is feeling better on an extremely limited diet. Yes, it is devoid of vitamin A. But the fact it excludes a number of commonly "triggering" foods should not be discounted as well. He noted reacting poorly to strawberries, which are actually a fairly common trigger food. There is something to be said about diet and autoimmune disease being linked. But I do not think normal levels of vitamin A have anything to do with it.

And there were a couple of other things I took issue with, but that sums it up. I believe Accutane is an extremely dangerous drug simply for the fact it is an overdose of a  metabolite of vitamin A, which many of us consumed daily for months at a time. I believe it causes immune system disturbance. I believe it possibly disrupts the retinoid pathway. I believe it causes global apoptotic effects. I believe it induces gene changes. I do not believe Accutane is actively in our bodies in excess amount,  thereby causing some sort of prolonged, acute response to said Accutane directly. In fact, evidence seems to show that avoiding vitamin A probably has more risks than benefits.
 

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MemberMember
1804
(@truejustice)

Posted : 06/12/2018 10:44 pm

Im going to investigate the top 8 tips for reversing Accutane side effects as shown on YouTube.

1. Bile Acids
2.Tudca
3. Green leafy vegetables
4. MSM
5. Coconut Oil
6. Calcium D Glucarate
7. Liquid Vit A ( takenonly once youve laid off it doing the other procedures first )
8. Vit C

If I give this a go and still dont feel any better I will look at Testosterone treatment of some sort.

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MemberMember
10
(@marshl1)

Posted : 06/13/2018 2:58 am

5 hours ago, ACCUiTy_drANE said:
Can you please provide a source that retinoic acid specifically can be stored in the liver for long periods of time? Accutane is a metabolite of Retinol (vitamin A) known as 13-cis-retinoic acid. The body cannot convert retinoic acid back to retinal or retinol. The half-lives of retinoic acid and their associated metabolites are under 30 hours (Wiegland, 1998).

I read the ebook and wrote my all my disagreements to the author. All due respect, I believe the book is nonesense. I will provide several reasons here, aside from the possible glaring pharmacological error in assuming Accutane stays in the body for years. :D  The author's main premise is that vitamin A is a blanket toxin that is at the root of almost all auto-immune disease. If that is true, he must explain the following:

1. Why do people with IBD show low vitamin A levels? Even if it is the disease causing the deficiency, shouldn't this be advantageous for symptoms? How come people with Chrohn's can be completely emaciated and still show symptoms?

2. If vitamin A is simply a toxin, why does it show efficacy for treating a lung disease?

3. Why is Accutane-induced night blindness helped by vitamin A supplementation? (Well, I can speculate why. Accutane actually interferes with some aspects of vitamin A metabolism due to the large doses of one particular metabolite being supplemented at the expense of everything else.)

4. Why is Accutane induced depression helped by vitamin A supplementation? Danby FW. Oral isotretinoin, neuropathy and hypovitaminosis A. Clin Exp Dermatol. 2008;33(2):190. (Again, I can speculate an answer. Of note, I see these types of anecdotes on my Accutane group too.)

5. The author argues that autoimmune diseases look a lot like hypervitaminosis A and that this is evidence it is the vitamin A is directly causing symptoms. The author must explain how drugs like prednisone, Humira, and topical creams help calm symptoms. Where does this vitamin A go during this symptom relief? Is it literally neutralized?

6. One of the arguments put forth is that liver growth with age helps fend off sub-clinical hypervitaminosis as we age. He uses this idea to explain why kids get Autism and eczema and elderly people get Alzheimer's. Specifically, he focuses on the fact that eczema is common in the very young (small livers) and then again in those age 50+ (those with stagnated livers). This is a bizarre point to me. What about autoimmune illnesses that are commonly developed in those who are in their 20s-30s? IBD? M.S.? How do you explain that?  Also, why do so many people never "outgrow" Autism? Perhaps the age of onset of these autoimmune illnesses have nothing to do with aging/expanding livers. . . . More broadly speaking, how is this theory remotely compatible with autoimmune illnesses that are intermittent/relapsing in nature? Also, through what mechanism would vitamin A (the one main cause of autoimmune illness) cause different autoimmune conditions at different ages? The real answer is that these conditions are much more complicated than the author lets on.

7. If vitamin A is at the root of autoimmune illness, how does this fit into the idea that microbial transplants can both cure and induce a number of autoimmune diseases in mice? Does bacteria make the liver grow or something?

8. He also misunderstands evolution by asking why the immune system behaves in such haywire ways during autoimmune illness if there is no physical reason to (e.g., active presence of vitamin A poisoning). Evolution does not lead to perfect organisms. It is more accurate to say natural selection weeds out traits that are detrimental to one's survival than it is to say natural selection selects for advantageous traits. This is not just semantics. Let me use a convoluted analogy. Let's pretend that when Tigers (for all intents and purposes) were "evolving," some evolved to have 30 pound tails and some evolved to have normal tails. Of course, the tigers with 30 pound tails would die off because it would hinder their ability to stalk prey. Now, if the surviving Tigers had some unnecessary trait such as wisdom teeth or an under-developed fifth leg that hardly hindered their ability to run, evolution has no mechanism to phase out these traits. And it wouldn't have a reason to. Why? Because these Tigers are still reproducing. Perhaps not all of them. Perhaps some of them incur infections from their "wisdom teeth" or are slightly impeded by their under developed limb. But if MOST Tigers are still able to reproduce with these traits, that's good enough for evolution. Some traits are "annoying" to an organism, but do not significantly hinder reproduction, so they stick around. Evolution doesn't care very much about quality of life.

9. The author is feeling better on an extremely limited diet. Yes, it is devoid of vitamin A. But the fact it excludes a number of commonly "triggering" foods should not be discounted as well. He noted reacting poorly to strawberries, which are actually a fairly common trigger food. There is something to be said about diet and autoimmune disease being linked. But I do not think normal levels of vitamin A have anything to do with it.

And there were a couple of other things I took issue with, but that sums it up. I believe Accutane is an extremely dangerous drug simply for the fact it is an overdose of a  metabolite of vitamin A, which many of us consumed daily for months at a time. I believe it causes immune system disturbance. I believe it possibly disrupts the retinoid pathway. I believe it causes global apoptotic effects. I believe it induces gene changes. I do not believe Accutane is actively in our bodies in excess amount,  thereby causing some sort of prolonged, acute response to said Accutane directly. In fact, evidence seems to show that avoiding vitamin A probably has more risks than benefits.
 

Thanks for this it's extremely helpful. I liked the idea presented in the ebook, it seemed to make a lot of sense to me for a number of reasons. One being when I consume high vitamin A foods such as eggs and dairy and seem to get an obvious relapse in my symptoms. I feel like i've been poisoned again. 
Im trying a low vitamin A diet, i've tried so many different things I figured it's worth a try.

You say you sent these questions to the author. Could you let us know if you get a reply? I'd be fascinated to know what he thinks about the great points that you make.

Thanks again,
Lee
 

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MemberMember
1804
(@truejustice)

Posted : 06/13/2018 3:10 am

8 minutes ago, marshl1 said:
Thanks for this it's extremely helpful. I liked the idea presented in the ebook, it seemed to make a lot of sense to me for a number of reasons. One being when I consume high vitamin A foods such as eggs and dairy and seem to get an obvious relapse in my symptoms. I feel like i've been poisoned again.
Im trying a low vitamin A diet, i've tried so many different things I figured it's worth a try.

You say you sent these questions to the author. Could you let us know if you get a reply? I'd be fascinated to know what he thinks about the great points that you make.

Thanks again,
Lee

Have you gotten rid of excess isotretinoin though??

youre probably like me where you havent and until you do youll feel like crap consuming Vit A foods - this is all mentioned in the 8 tips to help reverse Accutane side effects found on YouTube

You have to get rid of Accutane first and slowly introduce Vit A in liquid form - gotta get that bile flow moving again they say!!

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MemberMember
10
(@marshl1)

Posted : 06/13/2018 4:22 am

1 hour ago, TrueJustice said:
Have you gotten rid of excess isotretinoin though??

youre probably like me where you havent and until you do youll feel like crap consuming Vit A foods - this is all mentioned in the 8 tips to help reverse Accutane side effects found on YouTube

You have to get rid of Accutane first and slowly introduce Vit A in liquid form - gotta get that bile flow moving again they say!!

1 hour ago, TrueJustice said:
Have you gotten rid of excess isotretinoin though??

youre probably like me where you havent and until you do youll feel like crap consuming Vit A foods - this is all mentioned in the 8 tips to help reverse Accutane side effects found on YouTube

You have to get rid of Accutane first and slowly introduce Vit A in liquid form - gotta get that bile flow moving again they say!!

Well the guy above makes a very compelling argument that Isotretinoin or Retinoic Acid can not be stored in the liver for long periods of time. At least there is no evidence of this. I haven't taken Accutane for 5 years so it wouldn't be stored would it. The ebook treats Accutane as just another form of Vitmain A (a very high dose obviously) which is likely to take you past this threshold level which is pretty much the central theory of the ebook from what I understand. If you continue to consume Vitamin A then you're body is not able to deplete these toxic levels and you continue to get symptoms.
I don't know what to think anymore, I liked the ebook but the guy above makes some great points against the theory presented in the ebook. Hopefully he'll get some response from the author about his criticism

Im trying this low vitamin A thing anyway, see what happens.

By the way I tried that youtube protocol a while back, it didn't do much for me personally.

Thanks

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MemberMember
39
(@mikez)

Posted : 06/13/2018 4:59 am

7 hours ago, ACCUiTy_drANE said:

4. Why is Accutane induced depression helped by vitamin A supplementation? Danby FW. Oral isotretinoin, neuropathy and hypovitaminosis A. Clin Exp Dermatol. 2008;33(2):190. (Again, I can speculate an answer. Of note, I see these types of anecdotes on my Accutane group too.)

Hi Drane,
Do you by any chance have the excerpt from this article that states the depression can be helped by vit A supps, or any other articles stating this? Thanks!

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MemberMember
1804
(@truejustice)

Posted : 06/13/2018 5:57 am

1 hour ago, marshl1 said:
Well the guy above makes a very compelling argument that Isotretinoin or Retinoic Acid can not be stored in the liver for long periods of time. At least there is no evidence of this. I haven't taken Accutane for 5 years so it wouldn't be stored would it. The ebook treats Accutane as just another form of Vitmain A (a very high dose obviously) which is likely to take you past this threshold level which is pretty much the central theory of the ebook from what I understand. If you continue to consume Vitamin A then you're body is not able to deplete these toxic levels and you continue to get symptoms.
I don't know what to think anymore, I liked the ebook but the guy above makes some great points against the theory presented in the ebook. Hopefully he'll get some response from the author about his criticism

Im trying this low vitamin A thing anyway, see what happens.

By the way I tried that youtube protocol a while back, it didn't do much for me personally.

Thanks

How did they come to know of those 8 tips if it isnt true?

It must of worked on someone and be true if theres been success involved - unless theyre bullshiting?

What reason would they have to be bullshiting us?

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MemberMember
10
(@marshl1)

Posted : 06/13/2018 6:49 am

48 minutes ago, TrueJustice said:
How did they come to know of those 8 tips if it isnt true?

It must of worked on someone and be true if theres been success involved - unless theyre bullshiting?

What reason would they have to be bullshiting us?

I don't know mate, I got all the supplements recommended and tried them about a year ago. I'm sure they think they are right but lots of people think they have the answer to post accutane side effects.

The only way to know for sure if it will help you is to give it a good go. That's what im doing with this low vitamin A although im feeling less confident about it now

Thanks

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MemberMember
1804
(@truejustice)

Posted : 06/13/2018 5:50 pm

10 hours ago, marshl1 said:

I don't know mate, I got all the supplements recommended and tried them about a year ago. I'm sure they think they are right but lots of people think they have the answer to post accutane side effects.

The only way to know for sure if it will help you is to give it a good go. That's what im doing with this low vitamin A although im feeling less confident about it now

Thanks

Ive tried most of them too mate, although in an ad hoc fashion, Im going to give it another go with a bit more of a protocol in mind.

As I said, failing that Im going to look at testosterone, Jason3 has had good results from this, he doesnt discount that Vit A hasnt caused some issues but like he says, we dont know and nor do doctors- we really do just have to experiment unfortunately.

I will say though, Id hate to go on testosterone treatment when all I had to do was detox Accutane and start building up my natural Vit A again - that would be crazy.

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MemberMember
1803
(@guitarman01)

Posted : 06/13/2018 8:35 pm

23 hours ago, ACCUiTy_drANE said:

7. If vitamin A is at the root of autoimmune illness, how does this fit into the idea that microbial transplants can both cure and induce a number of autoimmune diseases in mice? Does bacteria make the liver grow or something?

Not sure how often you frequent the forum, but yes, maybe.
Except i'm not looking at bacteria atm, but what it evolved to.
Maybe it was never bacteria.

"the diversity of the microbiota on the cheek and the back was significantly increased after acne treatments"

Eukaryotes

Eukaryotes represent a tiny minority of all living things.[8]However, due to their generally much larger size, their collective worldwidebiomassis estimated to be about equal to that of prokaryotes.[

Pathogenic shifts in endogenous microbiota impede tissue ... - eLife

The interrelationship between endogenousmicrobiota, the immune system, andtissue regenerationis an area of intense research due to its potential therapeutic applications. ... The culture of these bacteria yielded a strain of Pseudomonas capable of inducing progressivetissuedegeneration.

Shifts in the microbiome impact tissue repair, regeneration ...

https://www.sciencedaily.com/releases/2016/08/160826151746.htm

Aug 26, 2016 -Shifts in themicrobiomeimpacttissue repair,regeneration. Summary: A definitive link between the makeup of themicrobiome, the host immune response, and an organism's ability to heal itself has been confirmed by scientists.

Role of the Microbiota in Immunity and inflammation - NCBI - NIH

by Y Belkaid - 2014 - Cited by 771- Related articles

The mechanism by which neonate tissues adapt to the formidable challenge of ..... the gut, TLR activation by commensals was required to promotetissue repair...

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MemberMember
10
(@marshl1)

Posted : 06/14/2018 7:15 am

On 13/06/2018 at 3:01 AM, ACCUiTy_drANE said:
Can you please provide a source that retinoic acid specifically can be stored in the liver for long periods of time? Accutane is a metabolite of Retinol (vitamin A) known as 13-cis-retinoic acid. The body cannot convert retinoic acid back to retinal or retinol. The half-lives of retinoic acid and their associated metabolites are under 30 hours (Wiegland, 1998).

I read the ebook and wrote my all my disagreements to the author. All due respect, I believe the book is nonesense. I will provide several reasons here, aside from the possible glaring pharmacological error in assuming Accutane stays in the body for years. :D  The author's main premise is that vitamin A is a blanket toxin that is at the root of almost all auto-immune disease. If that is true, he must explain the following:

1. Why do people with IBD show low vitamin A levels? Even if it is the disease causing the deficiency, shouldn't this be advantageous for symptoms? How come people with Chrohn's can be completely emaciated and still show symptoms?

2. If vitamin A is simply a toxin, why does it show efficacy for treating a lung disease?

3. Why is Accutane-induced night blindness helped by vitamin A supplementation? (Well, I can speculate why. Accutane actually interferes with some aspects of vitamin A metabolism due to the large doses of one particular metabolite being supplemented at the expense of everything else.)

4. Why is Accutane induced depression helped by vitamin A supplementation? Danby FW. Oral isotretinoin, neuropathy and hypovitaminosis A. Clin Exp Dermatol. 2008;33(2):190. (Again, I can speculate an answer. Of note, I see these types of anecdotes on my Accutane group too.)

5. The author argues that autoimmune diseases look a lot like hypervitaminosis A and that this is evidence it is the vitamin A is directly causing symptoms. The author must explain how drugs like prednisone, Humira, and topical creams help calm symptoms. Where does this vitamin A go during this symptom relief? Is it literally neutralized?

6. One of the arguments put forth is that liver growth with age helps fend off sub-clinical hypervitaminosis as we age. He uses this idea to explain why kids get Autism and eczema and elderly people get Alzheimer's. Specifically, he focuses on the fact that eczema is common in the very young (small livers) and then again in those age 50+ (those with stagnated livers). This is a bizarre point to me. What about autoimmune illnesses that are commonly developed in those who are in their 20s-30s? IBD? M.S.? How do you explain that?  Also, why do so many people never "outgrow" Autism? Perhaps the age of onset of these autoimmune illnesses have nothing to do with aging/expanding livers. . . . More broadly speaking, how is this theory remotely compatible with autoimmune illnesses that are intermittent/relapsing in nature? Also, through what mechanism would vitamin A (the one main cause of autoimmune illness) cause different autoimmune conditions at different ages? The real answer is that these conditions are much more complicated than the author lets on.

7. If vitamin A is at the root of autoimmune illness, how does this fit into the idea that microbial transplants can both cure and induce a number of autoimmune diseases in mice? Does bacteria make the liver grow or something?

8. He also misunderstands evolution by asking why the immune system behaves in such haywire ways during autoimmune illness if there is no physical reason to (e.g., active presence of vitamin A poisoning). Evolution does not lead to perfect organisms. It is more accurate to say natural selection weeds out traits that are detrimental to one's survival than it is to say natural selection selects for advantageous traits. This is not just semantics. Let me use a convoluted analogy. Let's pretend that when Tigers (for all intents and purposes) were "evolving," some evolved to have 30 pound tails and some evolved to have normal tails. Of course, the tigers with 30 pound tails would die off because it would hinder their ability to stalk prey. Now, if the surviving Tigers had some unnecessary trait such as wisdom teeth or an under-developed fifth leg that hardly hindered their ability to run, evolution has no mechanism to phase out these traits. And it wouldn't have a reason to. Why? Because these Tigers are still reproducing. Perhaps not all of them. Perhaps some of them incur infections from their "wisdom teeth" or are slightly impeded by their under developed limb. But if MOST Tigers are still able to reproduce with these traits, that's good enough for evolution. Some traits are "annoying" to an organism, but do not significantly hinder reproduction, so they stick around. Evolution doesn't care very much about quality of life.

9. The author is feeling better on an extremely limited diet. Yes, it is devoid of vitamin A. But the fact it excludes a number of commonly "triggering" foods should not be discounted as well. He noted reacting poorly to strawberries, which are actually a fairly common trigger food. There is something to be said about diet and autoimmune disease being linked. But I do not think normal levels of vitamin A have anything to do with it.

And there were a couple of other things I took issue with, but that sums it up. I believe Accutane is an extremely dangerous drug simply for the fact it is an overdose of a  metabolite of vitamin A, which many of us consumed daily for months at a time. I believe it causes immune system disturbance. I believe it possibly disrupts the retinoid pathway. I believe it causes global apoptotic effects. I believe it induces gene changes. I do not believe Accutane is actively in our bodies in excess amount,  thereby causing some sort of prolonged, acute response to said Accutane directly. In fact, evidence seems to show that avoiding vitamin A probably has more risks than benefits.
 

I sent this on to the author of the ebook and here is what he had to say if you're interested.
 

"Can you please provide a source that retinoic acid specifically can be stored in the liver for long periods of time? Accutane is a metabolite of Retinol (vitamin A) known as 13-cis-retinoic acid. The body cannot convert retinoic acid back to retinal or retinol. The half-lives of retinoic acid and their associated metabolites are under 30 hours (Wiegland, 1998).
 
Yes, I am aware that the reported half-life for RA is documented to be very short. However, I'm not buying that information. Firstly, the Accutane victims that have contacted me typically report that they are still experiencing the "side-effects" after more than 10 years later. So, on one hand, there's no question the drug causes long term damage, but the body should have been able to recover from that damage after 10 years. Therefore,it more likely that the half-life is much longer than reported. Secondly, the 30 hours claim is complete nonsense because the treatment of Accutane is often for 6 months or more. Over that time, the Accutane accumulates in the lipids that the body continuously moves out into the sebaceous glands of the skin. This is functional mechanism of the drug, and it typically takes about 6 or more months for the drug to "work". It works by toxifying the lipids to such an extent that the RA then poisons the bacteria living in those lipids. So, since this process has been drudging and accumulation process has repeated millions of times over now, clearly accutane persists in this lipids for at least 6 months, or more.  Thus, someone is lying about the 30 hours. Of course, the RA is not just poisoning the bacteria living on the skin, it is also poisoning the all-important stem cells too.
 
I don't think I had specifically stated that RA can be stored in the liver for a long period of time. But, it definitely persists in the skin lipids for long periods of time. That fact has been completely proven. Lastly, there's been so much fraud and corruption surrounding the justification for Accutane, it would not surprise me at all to learn the 30 hour half-life determination was made by the marketing department. But, since we know that RA accumulates in the skin lipids for six months or more, why would we believe its not going to accumulate in other body lipids too?
 
Quite ironically, I am now totally convinced that acne is the result of the over-accumulation of VA in the sebaceous glands in the first place. This over-accumulation causes them to swell up and expand, and that opens the skin pores to the allow bacteria to more easily enter. It also provides the non-stop transport of lipids that fuels the growth of that bacteria. What's happened to me now is that after 4 years of no VA is all of my skin has become super smooth, super nice, almost like it was when I was 10 years old. The pores have definitely become tiny ( as in normal).
 
 

I read the ebook and wrote my all my disagreements to the author. All due respect, I believe the book is nonesense. I will provide several reasons here, aside from the possible glaring pharmacological error in assuming Accutane stays in the body for years. :D

The author's main premise is that vitamin A is a blanket toxin that is at the root of almost all auto-immune disease. If that is true, he must explain the following:1. Why do people with IBD show low vitamin A levels? Even if it is the disease causing the deficiency, shouldn't this be advantageous for symptoms? How come people with Chrohn's can be completely emaciated and still show symptoms?
 
Not only do people with IBD show low levels of vitamin A, it is also reported in schizophrenia, autism, and post measles infections too. I believe it™s because there is prolonged cellular damage leading to the more rapid conversion of circulating VA to retinoic acid. Thus, this causes the depletion of the so-called vitamin. 
 
2. If vitamin A is simply a toxin, why does it show efficacy for treating a lung disease?
 
In all three of these studies, taking very high doses of beta-carotene, with or without 25,000 IU retinyl palmitate or 325 mg aspirin, did not prevent lung cancer. In fact, both the CARET and ATBC studies showed a significant increase in lung cancer risk among study participants taking beta-carotene supplements or beta-carotene and retinyl palmitate supplements.
Source: National Institutes of Health

https://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/

 
3. Why is Accutane-induced night blindness helped by vitamin A supplementation? (Well, I can speculate why. Accutane actually interferes with some aspects of vitamin A metabolism due to the large doses of one particular metabolite being supplemented at the expense of everything else.)
 
Yes, there are a lot of reports of  Accutane-induced night blindness.
 
I've read similar reports of vitamin A supplementation being used to treat the condition. But, what so amazing to me about these reports is that they fail to see the most obvious thing in the world. It that they've first STOPPED the Accutane treatment, and then STARTED the vitamin A supplementation, and then claim the VA helped ameliorate the disease. Obviously, they simply stopped adding the toxin causing the night blindness, and the body then starts repairing that damage. So, if they even supplementation these people with say sawdust, they would have still recovered from night blindness. They would have probably recovered even faster too. The VA supplementation had nothing to do it it (other than the oil containing the VA could be beneficial).
 
4. Why is Accutane induced depression helped by vitamin A supplementation? Danby FW. Oral isotretinoin, neuropathy and hypovitaminosis A. Clin Exp Dermatol. 2008;33(2):190. (Again, I can speculate an answer. Of note, I see these types of anecdotes on my Accutane group too.)
 
AS ABOVE
 
5. The author argues that autoimmune diseases look a lot like hypervitaminosis A and that this is evidence it is the vitamin A is directly causing symptoms. The author must explain how drugs like prednisone, Humira, and topical creams help calm symptoms. Where does this vitamin A go during this symptom relief? Is it literally neutralized?
 
The drugs block up the same cellular receptors as used to transport the retinoids in to the cytoplasm. So, no, they are not literally neutralizing the VA, just postponing it.
 
 
6. One of the arguments put forth is that liver growth with age helps fend off sub-clinical hypervitaminosis as we age. He uses this idea to explain why kids get Autism and eczema and elderly people get Alzheimer's. Specifically, he focuses on the fact that eczema is common in the very young (small livers) and then again in those age 50+ (those with stagnated livers). This is a bizarre point to me. What about autoimmune illnesses that are commonly developed in those who are in their 20s-30s? IBD? M.S.? How do you explain that? Also, why do so many people never "outgrow" Autism? Perhaps the age of onset of these autoimmune illnesses have nothing to do with aging/expanding livers. . . . More broadly speaking, how is this theory remotely compatible with autoimmune illnesses that are intermittent/relapsing in nature? Also, through what mechanism would vitamin A (the one main cause of autoimmune illness) cause different autoimmune conditions at different ages? The real answer is that these conditions are much more complicated than the author lets on.
 
I do extensively document this process of liver volume correlating to disease, and explain exactly why the disease often first shows up the 20s-30s. In my second book, I do explain that autism is really brain damage. Most people are not going to recover from that. But, some do.
 
7. If vitamin A is at the root of autoimmune illness, how does this fit into the idea that microbial transplants can both cure and induce a number of autoimmune diseases in mice? Does bacteria make the liver grow or something?
 
No, the bacteria is helping to consume the VA, and expel it from the body via the digestive waste.
 
 
8. He also misunderstands evolution by asking why the immune system behaves in such haywire ways during autoimmune illness if there is no physical reason to (e.g., active presence of vitamin A poisoning). Evolution does not lead to perfect organisms.
 
I disagree with this. Evolution does lead to perfect organisms.There are millions of animal and plant species that are perfected well adapted to their environments.
 
 
It is more accurate to say natural selection weeds out traits that are detrimental to one's survival than it is to say natural selection selects for advantageous traits.
 
it's not  natural selection.
 
This is not just semantics. Let me use a convoluted analogy. Let's pretend that when Tigers (for all intents and purposes) were "evolving," some evolved to have 30 pound tails and some evolved to have normal tails. Of course, the tigers with 30 pound tails would die off because it would hinder their ability to stalk prey. Now, if the surviving Tigers had some unnecessary trait such as wisdom teeth or an under-developed fifth leg that hardly hindered their ability to run, evolution has no mechanism to phase out these traits. And it wouldn't have a reason to. Why? Because these Tigers are still reproducing. Perhaps not all of them. Perhaps some of them incur infections from their "wisdom teeth" or are slightly impeded by their under developed limb. But if MOST Tigers are still able to reproduce with these traits, that's good enough for evolution. Some traits are "annoying" to an organism, but do not significantly hinder reproduction, so they stick around. Evolution doesn't care very much about quality of life.
 
 If anyone has really bothered to read Darwin's Evolution of the Species, they would realize that Darwin know full well that random mutation, and natural selection plays such a tiny role in evolution. Darwin's clearly documented that it was a breading selection the was the real driver in evolution. Moreover, he also knew that it was the mother's life experiences that "programmed" the so-called mutations in the offspring. It is not random.
 
9. The author is feeling better on an extremely limited diet. Yes, it is devoid of vitamin A. But the fact it excludes a number of commonly "triggering" foods should not be discounted as well. He noted reacting poorly to strawberries, which are actually a fairly common trigger food. There is something to be said about diet and autoimmune disease being linked. But I do not think normal levels of vitamin A have anything to do with it.
 
I'm not just "feeling better". I've now fully recovered from doctor diagnosed cataracts, eczema, and kidney disease too. I have zero doubt that vitamin A had everything to do with it. I continue to live on my VA deplete diet to prove that vitamin A is not a vitamin. No after 4 years, I think someone has some explaining to do in support of that vitamin theory.
 
And there were a couple of other things I took issue with, but that sums it up. I believe Accutane is an extremely dangerous drug simply for the fact it is an overdose of a metabolite of vitamin A, which many of us consumed daily for months at a time. I believe it causes immune system disturbance. I believe it possibly disrupts the retinoid pathway. I believe it causes global apoptotic effects. I believe it induces gene changes. I do not believe Accutane is actively in our bodies in excess amount, thereby causing some sort of prolonged, acute response to said Accutane directly.
 
In fact, evidence seems to show that avoiding vitamin A probably has more risks than benefits"
 
Oh yeah? Like what?
 
But, let's not get too bogged down into debates. Debates are almost pointless. This is science, so let's see what the experiments show us. If you have time, and space I'd highly recommend repeating my small animal experiment.
 
Just so that you know, I'm not alone in this. I've been contacted by four separate academic medical researchers that very much agree with my observations and theories. It's just too early for them to make any public statements.
 
I hope this helps.
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MemberMember
39
(@mikez)

Posted : 06/14/2018 7:30 am

"Quite ironically, I am now totally convinced that acne is the result of the over-accumulation of VA in the sebaceous glands in the first place. This over-accumulation causes them to swell up and expand, and that opens the skin pores to the allow bacteria to more easily enter. It also provides the non-stop transport of lipids that fuels the growth of that bacteria"

Perhaps some evidence should be used to support this.

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MemberMember
10
(@marshl1)

Posted : 06/14/2018 8:10 am

37 minutes ago, mikez said:

"Quite ironically, I am now totally convinced that acne is the result of the over-accumulation of VA in the sebaceous glands in the first place. This over-accumulation causes them to swell up and expand, and that opens the skin pores to the allow bacteria to more easily enter. It also provides the non-stop transport of lipids that fuels the growth of that bacteria"

Perhaps some evidence should be used to support this.

It sounds like an educated guess to me. I think he's provided us with plenty of very useful information, check out his ebook if you haven't

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MemberMember
0
(@kolonie)

Posted : 06/14/2018 12:03 pm

Hello,

sorry for m bad English at first, I am from Germany.
My name is Dennis, I am 23 years old & have do Accutane about 1 year at 10mg/day (Last pill was on the beginning this year)
So I am 6 months without Accutan.
But I have some Problems left.

1. I am sweating like shit. Tones of sweat even when it™s 20C+.
It starts 2 Month after start taking accutan and don™t remove :(
When I sit my ass and my back is wet as hell. My forehead is wet always when the sun is shining on it..
and it does not go better.
Aluminium salts don™t work very good.
can someone please help me?

2. But not sooo heavy problem.
my skin get very ugly scars when it™s hurt.

I am very thankful if somebody can help my with this terrible live destroying sweating :)

King Regards!
Dennis

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MemberMember
9
(@sacha_n)

Posted : 06/14/2018 12:52 pm

4 hours ago, marshl1 said:
It sounds like an educated guess to me. I think he's provided us with plenty of very useful information, check out his ebook if you haven't

Thank you @marshl1 for contacting GG (the author), his points are indeed useful. I'm too trying to adopt zero vit. A diet. It would probably be good to create a separate thread on these board dedicated to his theory.

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marshl1, marshl1 and marshl1 reacted