Notifications
Clear all

Repairing the long-term damage from Accutane

 
MemberMember
2
(@rafcej)

Posted : 01/03/2019 5:31 pm

anywan worked with naturist dr Garret Smith? he specializes in vitamin a detox ? the full program costs 597$ so it is a bit... did anyone try this? Is it worth it?

Quote
MemberMember
1803
(@guitarman01)

Posted : 01/03/2019 6:50 pm

@realninjaThanks. I see we have some overlapping thoughts. I'll keep what you said in mind.

 

On methylation. When I think of this I think of sulfur metabolism.

On Sulfur, probably not thought of much, its the third most abundant mineral in the body, vital for skin and hair.

Errors in sulfur metabolism, just a few quick thoughts on it.

Microbial pathways in colonic sulfur metabolism and links with health and disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3508456/

Inflammatory bowel disease

Colorectal cancer

Irritable bowel syndrome

Metabolic niche of a prominent sulfate-reducing human gut bacterium

https://www.pnas.org/content/110/33/13582

Mammalian Sulfur Amino Acid Metabolism: A Nexus Between Redox Regulation, Nutrition, Epigenetics, and Detoxification

https://www.liebertpub.com/doi/10.1089/ars.2017.7237

UTA biochemists study enzymes to provide keys for drug development in cancer, bacterial infection and neurodegenerative disease

https://www.uta.edu/news/releases/2018/08/Brad Pierce NIH grant.php

Sulfuris the one of most abundant elements in thebody but little is known about the enzymes involved in its metabolism,

Quote
MemberMember
0
(@guy345)

Posted : 01/04/2019 1:52 am

Hi all,

I am also suffering post accutane side effects.

i took accutane in 2008, 11 years ago now.

 

Ongoing Symptoms

- Thinned Skin

- Dry Skin

- Dry Eyes

- Flushing (Helped by Remeron and Clonidine but still there).

- Developed Food Sensitivities, especially to high histamine foods. I never reacted to any foods prior to accutane.

- Digestive issues.

 

One thing that has helped with my overall health it a ketogenic diet. Helped in some way with all the above pretty much. It is a very complicated diet but has been shown to heal the body and an incredible host of illnesses, some of which include, Obesity, Epilepsy, Liiver disease (non alcoholic fatty liver), Autism, Diabetes, Traumatic Brain Injury, Epilepsy, Multiple Sclerosis, Irritable Bowel Syndrome (IBS),Parkinsons Disease, Mitochondrial Disease, Depression, Anxiety, etc.

I realize that keto is still controversial but 6 months in and all my blood panels have improved (within normal range), lost 45 pounds and now at a toned 160 pounds @ 59. I feel great, so it is working in that regard. I dont want this to be a keto debate so if you do not agree with the diet fair enough, just sharing my experiences.

 

QUESTION!

Since stopping Accutane and having the above ongoingissues, I have always tried to stayaway from higher doses of Vitamin A inall forms (supplements / food). As I was to believe that accutane was a toxic overdose of Vitamin A and putting more into the body (above the RDI would be detrimental).

Now, 11 years later, the keto diet calls for some leafy greens to maximize the vitamins, minerals and electrolytes. These are foodsthat I have always been nervous about due to taking accutane (Vitamin A) and what it did to me.

Is it okay to start eating higher dose foods with Vitamin A or do you all think that this is playing with fire? Or am I worrying over nothing?

Some examples of what I mean, or what the keto diet calls for is to include1 of the following daily choices (not all but just 1).

 

- Kale(1 Cup)

Vitamin A - 13,623I.U. (international units), or 272% percent of the RDI (Reference Daily Intake).

 

- Swiss Chard (1 Cup)

Vitamin A - 10,717 I.U. (international units), or 214% percent of the RDI (Reference Daily Intake).

 

- Spinach (1 Cup)

Vitamin A - 9,376I.U. (international units), or 188% percent of the RDI (Reference Daily Intake).

 

Do you think eating and including 1 cup of 1 of these choices above is okay or something I should still avoid due to the high Vitamin A content?

Any thoughts, experiences or comments are much appreciated!

Thanks!

 

Quote
MemberMember
397
(@calcified)

Posted : 01/04/2019 4:10 am

I have not noticed any improvement with vitamin a and my test came back in low range only thing that actually is working currently is B12 as it may lower tnfa levels. My B12 levels are below range without supplementing and I am not vegaterian.

Quote
MemberMember
19
(@justdry)

Posted : 01/04/2019 5:45 am

12 hours ago, RafCej said:

anywan worked with naturist dr Garret Smith? he specializes in vitamin a detox ? the full program costs 597$ so it is a bit... did anyone try this? Is it worth it?

I shared a few emails with him recently regarding starting a low to zero vitamin A diet.

 

I've been doing it around 3 weeks now, maybe just over 3 weeks. During the first week or so I experienced some side effects like I had whilst on accutane (8 years ago) -such as painful heels, extra dry lips and had a couple of really painful headaches (i never usually get headaches). Since then they've started to ease off again, heels aren't painful anymore. Other than that, there's been no improvement so far, but I don't expect there to be yet.

My issue is mainly the dry skin, which i believe will take 6 months to a year of a low/zero vitamin A diet to see any change (if there is going to be a change). I've given my skin 8 years of damage from being severely dry so i'm not expecting moisture retention to return overnight. That's the only thing I am looking to achieve from this, I just want my skin to retain even SOME level of moisture on it's own.

Quote
MemberMember
1804
(@truejustice)

Posted : 01/04/2019 6:16 am

Can you pls share more specifics about this doctor!!

Does he help with General Vit A toxicityoutside of Accutane - is that his thing or does he know a lot about isotretinoin poisoning too??

Please be more specificabout what this guy specialises in - many of us who are 10-20 years on still with side effects would argue theres nothing to detox, ratherwe need to look at repairing things ie gut and mitochondria issues.

Pls let us know what this doctor thinks about our dilemma or if indeed he doesnt specifically know about Accutane issues...

Quote
MemberMember
0
(@guy345)

Posted : 01/04/2019 3:56 pm

^That is what I would like to know. I am 11 years out from accutane use.

Is it safe for me to start eating super foods high in Vitamin A again? Like dark leafy greens such as Chard orSpinach and/orKale?

These have around 10,000 I.U. Of Vitamin A. Or around 200% RDI.

I am not talking CodLiver oil which hasa whopping 2000% RDI regarding Vitamin A content but can we at least try some superfoods that are chalk full of vitamins, minerals and nutrients once per day to help heal the body that have Vitamin A at around 200% RDI?

It has been 11 years for me, do you guys think eating green superfoods once a day with high sources of Vitamin A would still be detrimental at this point?

Thanks!

Quote
MemberMember
1804
(@truejustice)

Posted : 01/04/2019 7:44 pm

I believe we need to hear some truth about possible A toxicity from an expert - a specialist who should know what theyre on about.

All victims have an opinion one way or the other on how they feel about Vit A post Tane - but thats it, its just an opinion at this stage.

Better off hearing it from a specialist so we know for sure. That way we can put it to rest and concentrate on other things if theres no toxicity and nothing to detox.

If there still is toxicity to deal with, we can get to work on doing all the right things to correct it including avoiding foods with Vit A in it.

Quote
MemberMember
10
(@marshl1)

Posted : 01/05/2019 6:45 am

10 hours ago, TrueJustice said:

I believe we need to hear some truth about possible A toxicity from an expert - a specialist who should know what theyre on about.

All victims have an opinion one way or the other on how they feel about Vit A post Tane - but thats it, its just an opinion at this stage.

Better off hearing it from a specialist so we know for sure. That way we can put it to rest and concentrate on other things if theres no toxicity and nothing to detox.

If there still is toxicity to deal with, we can get to work on doing all the right things to correct it including avoiding foods with Vit A in it.

An engineer called Grant Generaux has written two ebooks on the topic of Vitamin A poisoning and he has a chapter on Isotretinoin. The work that Dr Garrett Smith does is based on the work of GG. I have mentioned this on the this thread several times. If you want to know about this theory then check out his ebooks. He makes a very compelling case

Quote
0
(@Anonymous)

Posted : 01/05/2019 6:49 am

I was on a NO vitamin a diet for a week and made a full recovery but when I went back to my normal diet all my sides came back.

I then tried a paleo diet for a month and all my sides went away except dizziness and trouble breathing.

I'm now on my normal diet and dry skin seems to be gone and diarrhea and constipation is gone. Libido is back to normal but I get tingling and numbness in my balls when I sit for too long.

The sides I'm stuck with now:

Dizziness

Blurry vision

Trouble concentrating

Tiredness

Joint pains

Trouble breathing

My next step:

Paleo

Zinc and vitamin c

B vitamins

Digestive enzymes

Probiotics

I'm hoping this will heal me once and for all because my life is ruined.

Does anyone know how to get rid of the dizziness and brain fog???

 

 

 

Quote
MemberMember
10
(@marshl1)

Posted : 01/05/2019 8:07 am

On 11/16/2018 at 10:44 PM, TrueJustice said:

Yeah but the confusion with Vit A lies in the fact that doctors have put Tane patients on Vit A when they suffered adverse reactions - thats a fact.

Not sure where its posted exactly but thats what they did....I tried to ask why they knew to do this but there was no definitive answer from anyone....

Anyway - if the HPA axis is screwed, I doubt avoiding Vit A will fix it completely.

Well it's not all that surprising that doctors have put patients on Vitamin A but I think they are wrong for doing so. If/when GG's theory gets more exposure (which it is gradually)

then it could change opinion on Vitamin A.

There's no confusion for me, I prefer to go with the opinion of somebody who has studied vitamin A in depth, written two books on the subject, lived on a zero vitamin A diet for 3 years and cured himself of all kinds of illness. I myself have been on a low vitamin A diet for 6 months. If this vitamin is essential to life then why am I and many other people feeling better without it.

 

 

1 hour ago, Gatu77777 said:

I was on a NO vitamin a diet for a week and made a full recovery but when I went back to my normal diet all my sides came back.

I then tried a paleo diet for a month and all my sides went away except dizziness and trouble breathing.

I'm now on my normal diet and dry skin seems to be gone and diarrhea and constipation is gone. Libido is back to normal but I get tingling and numbness in my balls when I sit for too long.

The sides I'm stuck with now:

Dizziness

Blurry vision

Trouble concentrating

Tiredness

Joint pains

Trouble breathing

My next step:

Paleo

Zinc and vitamin c

B vitamins

Digestive enzymes

Probiotics

I'm hoping this will heal me once and for all because my life is ruined.

Does anyone know how to get rid of the dizziness and brain fog???

 

 

 

You were on a zero vitamin A diet for one week and you made a full recovery? You went back to your normal diet and all the sides came back?

Now your taking Zinc,Vitamin C, B vitamins etc?

Why not go back on the zero vitamin A diet??

6 minutes ago, marshl1 said:

Well it's not all that surprising that doctors have put patients on Vitamin A but I think they are wrong for doing so. If/when GG's theory gets more exposure (which it is gradually)

then it could change opinion on Vitamin A.

There's no confusion for me, I prefer to go with the opinion of somebody who has studied vitamin A in depth, written two books on the subject, lived on a zero vitamin A diet for 3 years and cured himself of all kinds of illness. I myself have been on a low vitamin A diet for 6 months. If this vitamin is essential to life then why am I and many other people feeling better without it.

 

 

You were on a zero vitamin A diet for one week and you made a full recovery? You went back to your normal diet and all the sides came back?

Now your taking Zinc,Vitamin C, B vitamins etc?

Why not go back on the zero vitamin A diet??

I'm pretty sure anyone on this forum will tell you that if you find something that allows you to make a full recovery in a week then you should keep doing it

Quote
0
(@Anonymous)

Posted : 01/05/2019 8:42 am

7 minutes ago, marshl1 said:

Well it's not all that surprising that doctors have put patients on Vitamin A but I think they are wrong for doing so. If/when GG's theory gets more exposure (which it is gradually)

then it could change opinion on Vitamin A.

There's no confusion for me, I prefer to go with the opinion of somebody who has studied vitamin A in depth, written two books on the subject, lived on a zero vitamin A diet for 3 years and cured himself of all kinds of illness. I myself have been on a low vitamin A diet for 6 months. If this vitamin is essential to life then why am I and many other people feeling better without it.

 

 

You were on a zero vitamin A diet for one week and you made a full recovery? You went back to your normal diet and all the sides came back?

Now your taking Zinc,Vitamin C, B vitamins etc?

Why not go back on the zero vitamin A diet

My zero vitamin a diet was rice, potatoes, steak. No other vegetables or fruit. My sides went away yes but dizziness came back. I then tried paleo which had the same effect as zero vitamin a but dizziness got better. I then tried normal diet and most of my sides came back and got pressure and numbness on my head but the dizziness got much better now I can walk properly but the dizziness is still there.

Another guy told me that I need sugar on my paleo diet to get rid of the dizziness. So that's what I'm going to try next.

 

Quote
MemberMember
10
(@marshl1)

Posted : 01/05/2019 8:49 am

3 minutes ago, Gatu77777 said:

My zero vitamin a diet was rice, potatoes, steak. No other vegetables or fruit. My sides went away yes but dizziness came back. I then tried paleo which had the same effect as zero vitamin a but dizziness got better. I then tried normal diet and most of my sides came back and got pressure and numbness on my head but the dizziness got much better now I can walk properly but the dizziness is still there.

Another guy told me that I need sugar on my paleo diet to get rid of the dizziness. So that's what I'm going to try next.

 

The purpose of a Paleo diet is to eradicate sugar. If you consume sugar you won't be doing a Paleo diet. Whatever the answer to your problems is I doubt very much that it's sugar.

Where did you hear about the low vitamin A diet? I think you were on the right track with that.

I think you could use some guidance from a professional or something but your symptoms are very similar to mine.

Quote
0
(@Anonymous)

Posted : 01/05/2019 9:00 am

7 minutes ago, marshl1 said:

The purpose of a Paleo diet is to eradicate sugar. If you consume sugar you won't be doing a Paleo diet. Whatever the answer to your problems is I doubt very much that it's sugar.

Where did you hear about the low vitamin A diet? I think you were on the right track with that.

I think you could use some guidance from a professional or something but your symptoms are very similar to mine.

I'm going to see a nutritionist soon to help me with my diet.

I can get rid of all my sides except the mental issues. My dizziness gets worse when I'm on paleo or zero vitamin a so I'm going to see a nutritionist to find out about that.

What are your symptoms?

11 minutes ago, marshl1 said:

The purpose of a Paleo diet is to eradicate sugar. If you consume sugar you won't be doing a Paleo diet. Whatever the answer to your problems is I doubt very much that it's sugar.

Where did you hear about the low vitamin A diet? I think you were on the right track with that.

I think you could use some guidance from a professional or something but your symptoms are very similar to mine.

I saw the low vitamin A diet on this forum. I also saw the paleo diet on here.

Quote
MemberMember
1803
(@guitarman01)

Posted : 01/05/2019 9:19 am

2 hours ago, Gatu77777 said:

Libido is back to normal but I get tingling and numbness in my balls when I sit for too long.

i've seen a few people mention this. I could relate this similar to a foot or leg falling asleep. Loss of sensation or feeling. Except for some the loss of sensation does not come back for whatever reason.

I think this could be a circulatory issue at its core.

This blood circulation can also be controlled by the nervous system, so this could possibly fall into autonomic nervous system function.

Obviously this isnt exclusive to one body part as you said you feel it in your head as well.

You can also find a study that showed reduced cerebral blood flow post Accutane. They called it organic brain damage, but im not sure if there was any real permanent damage at that point.

Quote
0
(@Anonymous)

Posted : 01/05/2019 10:52 am

1 hour ago, guitarman01 said:

i've seen a few people mention this. I could relate this similar to a foot or leg falling asleep. Loss of sensation or feeling. Except for some the loss of sensation does not come back for whatever reason.

I think this could be a circulatory issue at its core.

This blood circulation can also be controlled by the nervous system, so this could possibly fall into autonomic nervous system function.

Obviously this isnt exclusive to one body part as you said you feel it in your head as well.

You can also find a study that showed reduced cerebral blood flow post Accutane. They called it organic brain damage, but im not sure if there was any real permanent damage at that point.

My neurologist said something about autonomic nervous system dysfunction.

I'm going for tests soon.

When I sit my butt all the way too my balls gets numb and starts tingling for hours. I spread my legs and touch my toes to get the feeling back. It's the same with my legs and arms. Even my head gets numb when I wear a hat. I can no longer wear hats which sucks because I like hats.

Quote
MemberMember
1804
(@truejustice)

Posted : 01/05/2019 3:11 pm

8 hours ago, marshl1 said:

An engineer called Grant Generaux has written two ebooks on the topic of Vitamin A poisoning and he has a chapter on Isotretinoin. The work that Dr Garrett Smith does is based on the work of GG. I have mentioned this on the this thread several times. If you want to know about this theory then check out his ebooks. He makes a very compelling case

Im aware of Grants work and have downloaded his book, I was still sceptical though as it was only one person with his theory regardless of how much depth and believability there is inhis books.

So its great to also now know there is a specialistwho believes in these theories too - having said that, Id like hear from those whoveseen Dr Garret exactly what he said about Accutane toxicity and how to treat it.

Im sure he has more to say than just go and eat rice & steak for 3 years and report back to me......

Bring on the info pls!!

Quote
MemberMember
0
(@abi72)

Posted : 01/05/2019 7:22 pm

On 1/3/2019 at 9:50 AM, TrueJustice said:

Thx for this, Ive printed this report ready to show my kinesiologist next week. Itll be interesting to hear their take on it as we work on Gut - granted the test was for females,none the less I dont see why males would be any less affected!!?

Guitarman: whats your take on MTHFR testing? Have you done it?

I think I might just do the test to rule things out, My kinesiologist did pick up recently that my B12 was low, Im curious too about Folic Acid levels.

Im wanting to know if I should spendmore time investigating this or instead continue working on the gut.

You should also think about having your homocystein checked - especially related to B12 deficiencyand Accutane - (google it)

I think the MMAtest is more telling than B12

Quote
MemberMember
1804
(@truejustice)

Posted : 01/05/2019 8:02 pm

Thx man - Ill look at that too.

i really went in last week to get a referral for MTHFR Test - GP says we dont do that, I then say what about hair mineral test - again we dont do that.

so I said lets just do some blood tests for B vitamins. You have to go to alternative doctors for these other tests it turns out.

Ive got to say, the Autonomic Nervous System Dysfunction Test is something I should do!! The excess sweating and being out of breath easily has me thinking this could be something to look at.

You can also have lack of sweating as a sign which many on here have said in the past. I cant understand why any of my doctors havent suggested looking into this before....

Quote
MemberMember
397
(@calcified)

Posted : 01/06/2019 3:03 am

I find B12 good for hair, less dry and brittle.

Quote
MemberMember
0
(@abi72)

Posted : 01/06/2019 11:46 am

 

 

Quote
MemberMember
0
(@abi72)

Posted : 01/06/2019 12:14 pm

This explains whatB12 deficiency can lead to. Also explains what tests you need.

No accutane victims got cured supplementing B12 but it I suspect it is another part of the puzzle and needs to be addressed if insufficient - Accutane causes B12 deficiency.

Accutane is know to cause raised homocysteine so a very good idea to have this checked - Gp's won't do this test!

The answer is to make sure your B12 is in the top third of the range. Ofcourse we have no way of knowing if B12 is being utilised in the way that it should be.

It seems reasonable thatraised homocysteine could be responsible for depression and anxiety - lots of PubMed reports about this.

Quote
MemberMember
0
(@dcrangersfootballclub)

Posted : 01/06/2019 5:58 pm

Hi everyone haven't been on this forum in over 5 years, their seems a lot of information on this page now since the early days.

Can someone tell me the whacky theory that was going around about re taking accutane to reverse the body's cycle or something along those lines, i'm sure i seen it posted on here, thanks.

Quote
MemberMember
17
(@gutskinaxis)

Posted : 01/06/2019 8:12 pm

Strong B vitamin supplementation has helped me quite a bit, I'm a firm believer in that many of the severe symptoms caused by accurate are from B12 deficiency, malabsorption, destruction etc.

I also think a low vitamin A diet is worth exploring

Quote
MemberMember
17
(@gutskinaxis)

Posted : 01/06/2019 9:10 pm

For overall well being post accutane I would recommend lots of stretching, minimize or eliminate alcohol, plenty of antioxidants, B vitamin supplementation, and a mediterranean style diet

Quote