Also, don't waste time trying to read all 700 pages. Come here and read the freshest posts, and use Google to research and share info here. Multiple threads would ruin everyone's ability to come together in a central location.

15 hours ago, Aaron76 said:

Also, don't waste time trying to read all 700 pages. Come here and read the freshest posts, and use Google to research and share info here. Multiple threads would ruin everyone's ability to come together in a central location.

Oh, and yeah, glad the God fixes all thing works for you..but um, yeah, no. I have no faith in Dr's, but I will certainly try to at least DIAGNOSE an issue. Knock yourself out.

I still disagree with NOT starting a new thread, certainly cross post if nothing else. This request for inquiry is a new thing. You can not search withIN this 700 page post. I have tried.Oh, and yeah, glad the God fixes all thing works for you..but um, yeah, not so much.I have no faith in Dr's, but I will certainly try to at least DIAGNOSE an issue. Knock yourself out guy.

Well done Anna Nim.

Has anyone else emails the MHRA?

You must knowhow imperative it is that the experts hear all we have to say. Kids are beingprescribed this drug everyday. Young people not being informed about the dangers and having their lives destroyed. This drug is 35 years old and still we don't see victims coming forward in order to protect others.

Now is the time to speak up.

[email protected] (for the attention of the EWG)

State your;

age

sex

dosage

duration

your isotretinoin experience during and post treatment

list all your side effects.

Talk about your concerns and discuss what you would like to see happen next

Our aim next is to get research undertaken to find a cure for PAS and to fight for compensation

Please pm me if you want to discuss further.

I didn't say God fixes all things. I said His CREATIONS, ie certain superfoods, herbs, etc, are capable of it. You say you have no faith in doctors yet you drag your poor son through their bullshit, expensive testing and get nowhere. Guys who have been at this for decades have tried to warn you that you're wasting your time and money on these idiots. A doctor is not going to help you with this! All they know are more toxic pharmaceutical poison. Stop wasting money on them. Google is the best chance you have for recovery.

I emailed mhra and got nothing back, as expected. I realized long ago that most modern humans do not care about the well being of others. They are too lazy, too ignorant, etc.

Rxisk is a rare exception that has a prize worth over $60k for the person who comes up with a cure. People should be researching on Google and experimenting on their own with different things. That's the only way a cure will ever be produced. Doctors are not going to be a part of the solution. They are the problem.

41 minutes ago, Aaron76 said:

I didn't say God fixes all things. I said His CREATIONS, ie certain superfoods, herbs, etc, are capable of it. You say you have no faith in doctors yet you drag your poor son through their bullshit, expensive testing and get nowhere. Guys who have been at this for decades have tried to warn you that you're wasting your time and money on these idiots. A doctor is not going to help you with this! All they know are more toxic pharmaceutical poison. Stop wasting money on them. Google is the best chance you have for recovery.

Shut the Fuck Up Aaron with your Goddamn faith in God and Christian healing bullshit.

I wonder how the Anti Vit A advocates are going these days??

Id be super surprised if that alone gets someone back to full health. When youre dealing with a drug that can fuck up the immune system and alter DNA, youd have to think avoiding Awould only do so much......dunno could be wrong

12 hours ago, TrueJustice said:

I wonder how the Anti Vit A advocates are going these days??

Id be super surprised if that alone gets someone back to full health. When youre dealing with a drug that can fuck up the immune system and alter DNA, youd have to think avoiding Awould only do so much......dunno could be wrong

Hey, I am at 14 months VA free now, progress is slow, but it is working. Liver can hold up to two years worth of stored retin esters, so I am aiming at 24 months to see where I stand. People who haven't taken accutane seem to have success at a one year mark, these are VA overloaded from diet(palmitate, CLO, liver, eggs, etc...), just like us before we took accutane.

Another important protocol to follow while on low VA is one to activate B2 that gets B12 functioning. Accutane severely depletes, B1/B2/B12, and most likely the mineral co-factors selenium, zinc, and molybdenum. Since the body is flooded with retinoic acid, body needs to shutdown endogenous production, so the ADH and ALDH systems are shunted, retinol goes through this pathway just like alcohol, before it can be glucoronidated out of the body. Hence why you avoid alcohol on accutane.

Detox paths:

alcohol -> ADH -> ALDH -> acetic acid

carotenoids(plant) -> retinol -> ADH -> ALDH -> retinoic acid -> glucoronidated

ADH = alcohol dehydrogenase, ALDH = aldehyde dehydrogenase

B1 is known to be depleted in alcoholics and accutane users. You need B2 and molybdenum in the ALDH system along with zinc(RBP), etc... so accutane or too much vitamin A means you severely deplete B1, B2, B12, molybdenum, zinc, etc = crash

Activate B2 -> B1 -> B12 (low dose minerals):

https://b12oils.com/rnb.htm

Thx mate for the info, glad youre doing better on the low VA diet.

Are you on the C60 oil? It gets discussed Ive noticed to help those detoxing esp Vit A

Any experience using it?

4 hours ago, TrueJustice said:

Thx mate for the info, glad youre doing better on the low VA diet.

Are you on the C60 oil? It gets discussed Ive noticed to help those detoxing esp Vit A

Any experience using it?

I use activated charcoal sometime before my dinner meal, supposedly has very tiny amount of C60, and supposedly could be a good binder of VA in bile.

The polar science on C60 has me avoiding taking oil formulations directly.

25 minutes ago, under_tow said:

I use activated charcoal sometime before my dinner meal, supposedly has very tiny amount of C60, and supposedly could be a good binder of VA in bile.

The polar science on C60 has me avoiding taking oil formulations directly.

Good to see you still hanging around, have you had B12 tested? I have found even with my high intake of palmitate it didn't have a negative impact on my B12.

2 hours ago, Calcified said:

Good to see you still hanging around, have you had B12 tested? I have found even with my high intake of palmitate it didn't have a negative impact on my B12.

I show high B12 in blood, which means deficiency(as per link below), typical after accutane or taking large amounts of VA.

https://b12oils.com/paradoxical.htm

I just read about Adult-Onset Growth Hormone Deficiency? Is this us? My son has some of these issues..and his father managed to miss the renewal for his Medicaid. This was important. Now, we have to wait and then IF he re-qualifies, re-schedule the MRI and Urology that I waited so long for..

What are the signs and symptoms of adult-onset growth hormone deficiency?

Adults with growth hormone deficiency may have a wide range of symptoms. When these symptoms are severe, they can reduce people's ability to function both physical and psychological and this can dramatically lower the quality of their lives.

These symptoms include:

• a decrease in the amount of muscle bulk and strength
• increase in the amount offatin the body (especially around the waist)
• abnormalities of good and bad cholesterol. This can lead to an increase in the risk of heart disease
• abnormalities in the blood and in the circulation
• osteoporosis (brittle bones)
• low energy levels and decreased stamina
• impaired concentration and memory.

Anna - what makes you think this is us?

Is there a link between this and Accutane? Im just curious, cant say I dont suffer those symptoms but doesnt necessarily mean they stem from a human growth hormone issue.

Im quite certain I tested ok for any growth hormone issues last year with kinesiologist. Id be more inclined to think theres an issue with B1, B2 and B12 with lack of energy etc as Undertow suggests.

One of the first things detected by my kinesiologist was an issue with B12, Ill have to suss him out if there still is an issue and also will check on B1 & B2 levels. My kinesiologist has also detected bile issues last year so my issues tend to match up with most of the long term sufferers here.

Regarding growth hormone, doc's can test blood igf1 levels.

Mine are normal.

@under_tow B12 injection gives me cystic acne it's weird.

@Calcified It could be because B12 is non-functioning(from accutane), so raising levels artificially like that contributes to the paradoxical symptoms. Wish we had the answers...

21 hours ago, TrueJustice said:

Anna - what makes you think this is us?

Is there a link between this and Accutane? Im just curious, cant say I dont suffer those symptoms but doesnt necessarily mean they stem from a human growth hormone issue.

Im quite certain I tested ok for any growth hormone issues last year with kinesiologist. Id be more inclined to think theres an issue with B1, B2 and B12 with lack of energy etc as Undertow suggests.

One of the first things detected by my kinesiologist was an issue with B12, Ill have to suss him out if there still is an issue and also will check on B1 & B2 levels. My kinesiologist has also detected bile issues last year so my issues tend to match up with most of the long term sufferers here.

 

Not all of us, but many of these come up again andagain. Remember, according to Drs there is almost no link for Accutane and any health issues. *eyeroll* Brittle Bones, Low Energy Levels/ Decreased Stamina, Decreased muscles, Impaired Concentration. ESP since this drug damages the Pituitary gland, and this is a disorder of the Pituitary. Also, I think that since the receptors are damaged, the hormones might not be uptaked, even if your blood levels are normal. The issues with bile and stomach are known as well, which would affect your body absorbing supplements.

I know what you mean, our problem is were left with all these systemic issues that mimic every bloody known condition. Its natural to just want a black & white answer, to know what weve got so you can get about dealing with it.

Unfortunately thatll never be the case, we just have to deal with symptoms one by one without it ever being named other than a deficiency of some sort or chronic fatigue which is very vague.

22 hours ago, under_tow said:

@Calcified It could be because B12 is non-functioning(from accutane), so raising levels artificially like that contributes to the paradoxical symptoms. Wish we had the answers...

I wonder if vitamin A is sort of non-functioning now?

I received my son's blood work (my Dad paid thru Life Extension). I thought he paid for the Expanded Blood panel-which give a bunch of information. but he just did the snapshot. A bit annoying. But, anyway. while I am glad that his blood work is WNL, but I also know that 'normal' has a super, wide range. I feel his T is too low for a 18 year old.  WDYT? 

Testosterone Total Serum: 471 . (Only??)

Testosterone Free:  11.0 

Estradiol 10.5 (7.6-42.6)

Prostate-Specific Ag, Serum 1.0 (.04-4.0)

On 1/10/2020 at 8:40 PM, TrueJustice said:

I wonder how the Anti Vit A advocates are going these days??

Id be super surprised if that alone gets someone back to full health. When youre dealing with a drug that can fuck up the immune system and alter DNA, youd have to think avoiding Awould only do so much......dunno could be wrong

Laugh and be miserable all you want but I think my libido was the highest its ever been at this time of yearsince 2015. Also I rarely feel tiered or depressed either which was a HUGE problem post accutane. Can honestly say that except for 1 or two issues involving enjoyment of certain hobbies (these issues have periodically resolved them selves before), life is almost perfect.

On 1/11/2020 at 9:04 AM, under_tow said:

 

Hey, I am at 14 months VA free now, progress is slow, but it is working. Liver can hold up to two years worth of stored retin esters, so I am aiming at 24 months to see where I stand. People who haven't taken accutane seem to have success at a one year mark, these are VA overloaded from diet(palmitate, CLO, liver, eggs, etc...), just like us before we took accutane.

Another important protocol to follow while on low VA is one to activate B2 that gets B12 functioning. Accutane severely depletes, B1/B2/B12, and most likely the mineral co-factors selenium, zinc, and molybdenum. Since the body is flooded with retinoic acid, body needs to shutdown endogenous production, so the ADH and ALDH systems are shunted, retinol goes through this pathway just like alcohol, before it can be glucoronidated out of the body. Hence why you avoid alcohol on accutane.

Detox paths:

alcohol -> ADH -> ALDH -> acetic acid

carotenoids(plant) -> retinol -> ADH -> ALDH -> retinoic acid -> glucoronidated

ADH = alcohol dehydrogenase, ALDH = aldehyde dehydrogenase

B1 is known to be depleted in alcoholics and accutane users. You need B2 and molybdenum in the ALDH system along with zinc(RBP), etc... so accutane or too much vitamin A means you severely deplete B1, B2, B12, molybdenum, zinc, etc = crash

 

Activate B2 -> B1 -> B12 (low dose minerals):

https://b12oils.com/rnb.htm

Hey if you can, please keep us updated on the ApplePectin. I feel like I keep responding more and more positively to it!

5 hours ago, cnb30 said:

Hey if you can, please keep us updated on the ApplePectin. I feel like I keep responding more and more positively to it!

Hey @cnb30 I have been testing it on and off, since the methanol *it could* add to the DH system would not be helpful, but like you mentioned the snapback effect from taking it seems to be real. To note for others, pectin is very good at binding vitamin A in our bile for excretion.

@under_towif adlh is shunted after high retinoic acid exposure which I have read about, wouldn't we see people posting here with at least mildly elevated serum retinol levels?

1 hour ago, Calcified said:

@under_towif adlh is shunted after high retinoic acid exposure which I have read about, wouldn't we see people posting here with at least mildly elevated serum retinol levels?

Yes I would expect RBP and serum retinol to be high, anyone with acne will have this profile, but this does not show what is stored in liver and fat tissues(retinyl esters) which would show really how overloaded we are.

On 1/22/2020 at 12:43 AM, under_tow said:

Yes I would expect RBP and serum retinol to be high, anyone with acne will have this profile, but this does not show what is stored in liver and fat tissues(retinyl esters) which would show really how overloaded we are.

 

Im in two minds regarding vitamin A/retinoic acid, I believe I need it but not in the exposure that I have had. I think my levels would have been very high after accutane but afterwards I find my serum retinol is hard to rise, its possible, but takes alot of palmitate, this may be normal, but still doesn't represent a shutdown adlh which is weird or maybe my body expects to store alot in fat and liver now.

I find it harder to gain weight now that my retinol levels are a little higher, not sure why.