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NEED HELP! Accutane, MGD, low VitA diet / detox
Hello,
I was diagnosed with a very SEVERE meibomian gland dysfunction. I have already taken Accutane, unfortunately, TWICE, in addition to having used retinoic acid for the last 10 years of my life.
I know that the literature is abundant about the toxic effects of Accutane and retinoic acid on the meibomian glands, and I have no doubt that this abuse is the cause of my dry eyes.
Searching, I found suggestions about this detox process from a low or no-VitA diet, however, as english is not my native language and this is all very new, I am still having difficulties to better find papers and help about the basis of it all. . It gets difficult when ophthalmologists suggest the opposite: that a diet rich in vitamin A is beneficial for eye health. Actually, when I suggest that diet to my doctos they laughed at me, so I need urs help.
I remember that at the beginning of the disease I got to test the vitamin A in my blood and the levels were at 0.62 mg/L (in reference values that should go up to 0.7 mg/L).
My eyes are horrible and all my work and dreams of pursuing my studies have gone down the drain because of those toxic effects.
Please help me get started somehow. I just beggin you all. I just need a path to start everything else.
So I would like to know the following points:
1. What is the rationale / reason for detoxing from a low vitamin A diet for someone who has been intoxicated by Accutane? How that process work on our body? I mean, WHY should I do a low VitA diet after Accutane? Just to understand the cause.
2. What are the side effects of this diet?
3. What would "replace" Vitamin A and how will the body survive without it, when it is indeed important for many functions?
4. What are the articles, papers or things that support this diet? Where can I start to read about it?
5. Is there a diet model to be followed? And after that how long will it take before I can feel the results?
Thank you all, since then.
@act You really think that people here will wasting their time to answer questions like this all the time. When everything that you want to know is here? Accutane= active form of vitamin A. The most damaging form of vitamin A.. Ophthalmologists would be the last person I would listen about nutrition.. Diet model is to mainly eliminate foods high or moderate in animal and plant vitamin A, no supplements with vitamin A. Diet high in meat that is rich in protein, B vitamins and zinc. That's why beef is the favorite. + starches low in vit A for calories and as a source of soluble fiber like grains, legumes. To deplete vit A on low vit A diet it can take from 6 months to 2-4 or maybe more years.
Accutane is a form of Vitamin A that occurs naturally in the body. You take a high dose and get systemic problems which are showing signs of liver and biliary damage. There's plenty of Vitamin A in the liver already with acne and MGD. What really might help acne and meibomian gland dysfunction is choline and phospholipids. Choline (and betaine) being the best way to recover from fatty liver. Reduce the high carotenoids and reduce high Vitamin A in diet. Increase eggs, beef hearts, fish eggs, beef and pork to increase choline and phospholipids. They will protect the body from the leakiness of the bile. Fruits, beans, low carotenoid vegetables to help the detox. Iceberg lettuce and pomegranates for nitrates might be particularly helpful for dry eye. And betaine helps regulate osmotic control and hydration eg quinoa, beetroot and organic spelt. https://pubmed.ncbi.nlm.nih.gov/8726676/
@act Welcome to this group, which I believe is the right place for you to get answers for your problems.
@jiri summarized it well.
In order some answers to your questions:
1 - If you have taken Accutane you have been poisoned by a form of Vitamin A. The reason you took it was most probably acne, which is a manifestation of the same poisoning. This is vitamin A trying to escape your body in many ways, in your case it was from the skin, so it burnt your pores and your skin. In your case it is also trying to escape from your eyelashes, hence the melbonian glands problem.
If you take vitamin A in any form (dairy, carotenoids, supplements, creams etc...) it feels better at first but you are in fact just adding to the load your body suffers from. The body realizes that there is too much vitamin A around and should park it in your liver or in your organs or in your fats. On the contrary when you stop adding vitamin A from your food the body releases some of it (detox) and this lowers the general load. It takes a long time to get some results.
2 - The side effects of this diet : just the same as vitamin A poisoning because you are causing that stuff to move around before being expelled.
3 - No need to "replace" vitamin A, you already have too much parked in yourself. It would take MANY years for you to get rid of what you have. Blood tests do not reflect your vitamin A status because there is plenty in your organs that you cannot measure before death.
4 - If you want to read, read Grant's books , you can load them from this blog and they are free. Most researchers and doctors would like you to take more vitamin A and describe your symptoms as "deficiency". This is how you got to your present situation. You have to face the fact that you are on a forum of desperate people seeking results out of the consensus of "normal" medecine.
5 - Not all members agree on the ideal diet. In fact there are several people advocating different ideas. Depending on their level of poisoning, their way of life, their age etc.. @jiri gave you the best advice I believe. I would not take supplements as they might increase the amount and speed of detox and this is very painful.
If you start this adventure, please create a thread in the Progress Reports part of this Forum with your results regularly, this will help other people. Your experience is precious. https://ggenereux.blog/discussion/forum/progress-report/
You can read what happened to other people too. Know that you are not alone.
Good luck and best wishes
@jiri i get ur point, but maybe I didnt make myself clear. It's not about wasting time, it's about being in a mutual aid community. I could to spend (and I really spend) a lot of time trying to help a fellow man with a problem I've been through and I know more about with my personal xperience. Apparently the people who replied to this thread did too, including you (and very glad for that). Im not ashamed to ask help when I need, specificly about something not tradicional. I mean, its not something obvious and maybe that questions could be a start for others ppl who r reading right now too. Btw, thank you very much for your answer, it was very important for me.
@andrew-b thank you so much for your time, really! I just get a little confused about the egg: I already eat it daily and after reading about the low Vitamin A diet I was thinking of take the eggs off because its look to be a food with good Vitamin A levels. Is there a limit of tolerable Vitamin A in the diet ? Egg is ok?
Quote from Ourania on November 27, 2022, 8:24 am@act Welcome to this group, which I believe is the right place for you to get answers for your problems.
#jiri summarized it well.
In order some answers to your questions:
1 - If you have taken Accutane you have been poisoned by a form of Vitamin A. The reason you took it was most probably acne, which is a manifestation of the same poisoning. This is vitamin A trying to escape your body in many ways, in your case it was from the skin, so it burnt your pores and your skin. In your case it is also trying to escape from your eyelashes, hence the melbonian glands problem.
If you take vitamin A in any form (dairy, carotenoids, supplements, creams etc...) it feels better at first but you are in fact just adding to the load your body suffers from. The body realizes that there is too much vitamin A around and should park it in your liver or in your organs or in your fats. On the contrary when you stop adding vitamin A from your food the body releases some of it (detox) and this lowers the general load. It takes a long time to get some results.
2 - The side effects of this diet : just the same as vitamin A poisoning because you are causing that stuff to move around before being expelled.
3 - No need to "replace" vitamin A, you already have too much parked in yourself. It would take MANY years for you to get rid of what you have. Blood tests do not reflect your vitamin A status because there is plenty in your organs that you cannot measure before death.
4 - If you want to read, read Grant's books , you can load them from this blog and they are free. Most researchers and doctors would like you to take more vitamin A and describe your symptoms as "deficiency". This is how you got to your present situation. You have to face the fact that you are on a forum of desperate people seeking results out of the consensus of "normal" medecine.
5 - Not all members agree on the ideal diet. In fact there are several people advocating different ideas. Depending on their level of poisoning, their way of life, their age etc.. @jiri gave you the best advice I believe. I would not take supplements as they might increase the amount and speed of detox and this is very painful.
If you start this adventure, please create a thread in the Progress Reports part of this Forum with your results regularly, this will help other people. Your experience is precious. https://ggenereux.blog/discussion/forum/progress-report/
You can read what happened to other people too. Know that you are not alone.
Good luck and best wishes
Just wow! I dont know if I can thank you enough for all your patience in answering every question. I believe and hope this could help a lot of ppl who r starting and looking for some direction like I'm too. That was very nice of you, thank you very much.
I will certainly get the books and read them right away. I would just like to know your opinion about two other things:
1. Is there a tolerable limit of vitamin A to be ingested in this diet? I mean, what would be "low"?
2. When you said that the side effects of this diet is "just the same as vitamin A poisoning" you mean that my eyes will get worst or you r talking about get my acne problem back? Or maybe both...? Just to understand for what expect (and also I will search better about this in the books u said).
Again, thank you very much.
@act one thing is asking specific question. Another thing is asking tell me everything basically.. Also you want to know what why when for 100%. Nobody knows how YOU will react. Nobody knows what is going on in YOUR body specifically. Everyone is different. Everyone has different deficiencies, toxicities, different style of live and diet etc.. So what you have to do is to research for yourself. Don't think that someone will tell you here something and that will be and is 100% true for YOU. Because I see where scenario like this is going. You will do exactly what somebody here in this topic will tell you and 5 months later you will come back and blame others that this or that happened to you etc.. So take your time and just read and make your own decision. Don't expect that somebody else will hold your hand and tell you everything that YOU need for YOUR situation.. Like I said nothing wrong about asking some specific question, but in this case it seams like you want answers for everything so you are 100% sure. Doesn't work like that..
@andrew-b thank you so much for your time, really! I just get a little confused about the egg: I already eat it daily and after reading about the low Vitamin A diet I was thinking of take the eggs off because its look to be a food with good Vitamin A levels. Is there a limit of tolerable Vitamin A in the diet ? Egg is ok?
@act If you read my other reports you'll see I did 1-2 eggs a day throughout the detox. I believe it made things easier for me. Less reactions to foods and no pain from severe leakiness or detox. The benefits of eggs like choline, sphingomyelin, other phospholipids, selenium, folate, B5 and good protein far outweigh the small amount of Vitamin A (about 6% of RDA) and lutein in them. My friends on eggs are doing well whether starting out or after a long time on the original approach. Things have improved much more for me on 3-4 eggs a day in the last 7 months. Choline (and betaine in quinoa or organic spelt/wheat) is what helps the liver recover the best.
1. Is there a tolerable limit of vitamin A to be ingested in this diet? I mean, what would be "low"?
Impossible to answer this as many factors are there. Because there would be a tipping point, where the body decides enough is enough and it is time to detox and this is different for everyone. What is sure is that if you ingest more than this tipping point, you are adding to the load. If less, you are detoxing, which does not happen in a linear fashion, at least not for me, this comes in successive bursts.
2. When you said that the side effects of this diet is "just the same as vitamin A poisoning" you mean that my eyes will get worst or you r talking about get my acne problem back? Or maybe both...?
It did not happen like that for me, my eyes got better and better, but my skin was worse and worse. Eventually I got nearly bleeding from my nails but my eyes were alright, which was for me marvelous.