I needed to disable self sign-ups because I’ve been getting too many spam-type accounts. Thanks.
K. Log
Hello to Everyone,
I'm K., I'm 30. I took isotretinoin about 6 years ago. I have severe side effects:
-tetany, which was at one point in life threatening, I was hospitalized, now it is under control
-dry, thin skin, dry corners of mouth, scarred face after occasional spots (acne never went away, but started to leave indented marks, which wasn't a case before isotretinoin- my skin was healing very fast before without leaving scars)
-wounds, which were healing very fast, now are healing very slowly and are leaving huge scars
-premature wrinkles
- open pores appeared on my whole face, change in skin structure to something awful, I have this feeling of skin being too tight
-extremely dry, wrinkled lips, which I have to moisturize all the time
-red, dry eyes
-used to lose hair and had prematurely grey temples, but it improved, now hair is just dry
-less elasticity in tendons and weaker joints, especially knees, which are crackling a lot
-skin on whole body is thin and like a paper
-extreme sensitivity to sun exposure, which wasn't the case before- I could be in the sun all day, I tanned normally without burning
-feeling that my life is over, but I managed to get over psychological issues (it was a long process)
Life now:
I can' t drink alcohol due to fear of having tetany seizures again. I have occasional problems with breathing and sometimes irregularity of heart beating. I still have paresthesia issues, sometimes I really "feel" my peripheral nervous system, especially in hands. I have some ionic imbalances, I was put on potassium and calcium in hospitals.
I have to live makeup free life now, because I literally can't put on makeup- my face sheds it with dead skin cells, nothing stays on, I have enlarged pores (I didn't have before), which are more visible by foundation, my lips are too dry to put something on them. I have to use heavy lotions all the time, at least 3 times a day for whole face. I stopped washing my face about a year ago, because water is too drying (I don't even try to use detergents on my face). I have problem with normal toothpastes, they dry the corners of my mouth till the point of corners cracking.
I am a very active girl, I love different kinds of sport, but I'm worried about the state of my knees. They are getting stiff, I can't squat properly, the knees are too stiff for that now. I used to windsurf a lot, but wind is too drying to my skin and eyes now, my skin is super sensitive. I have to avoid sun now too.
Despite all that, I lead quite active life, I just stopped looking at the mirror some time ago and modified my activities 😀
I just want to be free of this drying skin pain on my face, I don't care anymore that I developed scars on my face, have ugly red spots after acne, have red eyes. I just want to be healthy, be able to do sports. I don't want to worry about depleted bones and not being able to breath during tetany seizure. I want not my whole life back, just the basic health.
My plan is to start with long fasting period (I think about 2 weeks, but I will listen to my body and if this would bring problems, I will stop), after that I plan vitamin A elimination diet with intermittent fasting. Maybe I will search for a good naturopath. Your progress stories gave me hope, which I didn't have for a long time. I still don't know if I can be healed, but I need to try. I will start my fasting period in few days and I will write about changes (or no changes).
English is my second language, so I probably messed up a little bit 😀
Thanks <3
K.
Why do you want to fast before starting you vitamin A elimination diet? I don't think fasting is helpful, since the body needs protein to make retinol binding protein to protect you from vitamin A. Also when fasting you are liberating a lot of fat from your fat stores. There's probably lots of vitamin A in your bodyfat which will then come into your blood, causing toxicity symptoms. If I were you I would just skip the fasting and jump right in with a low vitamin A diet. That is what I did too and I felt positive changes happening very quickly. After one week on the low vitamin A diet I felt a noticeable drop in inflammation and more mental clarity. My eczema and asthma took longer to resolve. My eczema began to heal after 5 weeks and my asthma was totally gone after 5 months. I was mostly eating Grants diet, so just rice (white or brown), lean beef, turkey breast, black beans, white beans, mushrooms. I am also eating white bread and white-flesh/purple-flesh potatoes now, which I believe are safe and mostly free of all carotenoids. I would avoid yellow-flesh potatoes, since they are high in lutein. Lutein is a carotenoid like beta-carotene. Some peope are very sensitive to lutein and it can cause depression, eczema, brain fog, and other Vitamin A toxicity symptoms. Most whole grains (except brown rice) and yellow potatoes are high in Lutein. Eating high lutein grains like whole wheat, oats, barley, spelt, buckwheat, corn etc. gives me dry eyes.
Hi @kasia I second the ‘don’t do the fast’ opinion of @vinero. I think it will cause you more suffering as it could bring on a large vA dump. I find if I don’t eat I feel much worse even now (2 years in). Not eating gives me my ‘high vA in the body’ warning signals (just very minor things but I’m tuned into them) that suggest I’m dumping more out of my liver/fat tissue. If I were you I’d make sure all your channels of elimination are working well - bile (soluble fibre & other binders), urine, sweat & breath. You are moving a lot which is good for the lymphatic system. Only then would I lower vA in the diet. This will cause the body to start detoxing & you want to make sure the toxicity gets out of the body rather than just moving around. Good luck. Low & slow is best for all changes imo.
Hi @kasia, you are getting good advice here. I can skip a meal now and then but I learned way back that I'm too toxic to fast, LOL. Have you ever seen the show survivor? They are often not getting enough to eat and sometimes a person will just become incapacitated and it is never quite explained. I had fainting when I tried. And then even though I immediately broke the fast I felt as if I'd been hit by a truck for days.
My cats are also VA toxic and 17 years old. (I gave them too much liver and yolk over time) One seemed to become anorexic and died from what seemed to me like a heart attack, while my other cat of the same age and toxicity *who eats regularly* lives on. The vet has told me that it does seem like a key thing.
I feel that you and I have some very similar symptoms! I think you may get your wish (regarding feeling better first vs looking better first). That is how things have gone for me.
I'm not sure if I ever took retinoid skin meds. I was under the care of a skin doc for about a year before I gave up on that route, LOL. I do remember being on prescription lotions and on oral antibiotics. I can't find any records of that time, it was about 17 years ago. I did take a lot of fermented cod liver oil and TONS of vitamin A foods.
@kasia I am a post accutane user as well, and agree with @vinero @jaj that fasting is probably not the best option to start with, and would also avoid intermittent fasting. I think it is better to be off stress hormones, which are triggered by fasted states. Eat when hungry, ample protein, carbs and fat.
First 6months will be a roller coaster of ups and downs. My knee joints have healed up nicely, and able to sprint and squat again, but I am at over 2 years low VA.
Some examples of lowish VA foods:
lean beef, lean chicken/turkey, egg white, non fatty fish
high oleic safflower oil, coconut oil, olive oil
whole wheat bread/pasta, basmati rice, potato, beans, oatmeal, white corn, non-fortified flours
cauliflower, peeled cucumber, turnip, celeriac, parsnip, onion, garlic, radish, olives, pickles, cabbage
banana, grapes, peeled apples, pineapple, raisins, dates, blueberries, raspberries, strawberry, cherry
Apple juice, grape juice, lemonade, coconut milk,
Sugars, maple, honey, brown/white
Really important to have fiber with meals: beans, whole wheat, potato, low VA fruit and veggies this helps to bind the VA so it get be excreted. Increase fiber slowly at the beginning.
Hi @orion,
Nice list, tasty diet. One thing I disagree with though is egg white without the yolk. Easy for biotin to be low in diets and it's very important for vit A detox too. Egg white makes it harder to get enough biotin. I actually eat only the yolk (which is loaded with biotin and other nutrients), a few a week.
Hi @kasia
I also took accutane and I have been on low vit A for a year. i'm 24.
I had scarring from pimples too after accutane but I feel like that has improved. I mostly get pimples when I'm on my period and I feel like my face heals more quickly. I don't have so much redness/inflammation and scarring anymore. Also wrinkly/dry lips have improved a lot.
I think getting enough protein and minerals is important for post accutane users because we are so damaged and we need retinol binding protein a lot too. I try to get at least 50g protein everyday. I have started eating 200g meat every day now.
I think a naturopath is a good idea. I am a client of a naturopath too, and I have had a hair analysis to measure my mineral levels
I am 4 months in and I have not taken Accutane. I have not had skin problems. I had other type of health problems and I would not say severe, but manageable. However, I have been reading a lot of the comments by people on this lifestyle and early on when I came to this site, there were others who said that for my type of questions I might like to join the Dr. Garrett Smith network. I did that and I am very glad I did, as I have learned a lot of practical tips. Such as: maybe hardwood charcoal on your skin would help (try a test patch and go slow before trying more.) Some people take a charcoal bath. Some people take it orally (I do, because after 4 months on low A diet, I went to tanning salon 2-3x [I will not go again this year] and it has caused me 2 weeks of itching skin all over body (not on my face because I covered my face in the tanning bed.)) That is for example. Now, I also will use bentonite clay on skin because it is lighter in color and I don't like the black charcoal on my skin.
I found many foods that I should and should not eat, by help from the Dr. Garrett Smith network. I was on restrictive diet before, but with Low A diet I was able to add back beans and grains, but I abstain from many others.
My knees have been a problem, too. I had a swelling knee for 3 years, then when I lowered my inflammation it was better. However, my knee caps pop a lot every day. Also, I have had total body pain in joints and muscles for many years. But, Dr. Smith's advice about potatoes was that if your joints are popping you should not each them. Well, I didn't eat them before this diet and my joints popped... so I thought eating potatoes has nothing to do with it. I ate potatoes for a couple of months when I started Low A. Well, i have stopped potatoes--after 2 weeks, my joints did not pop so much and am generally feeling better. This is very interesting to me since I thought grains were the problem, but now I see that potatoes are part of the cause.
So, certain things that we have tried in the past and they did not work, can be tried again in the future after you are doing the Low A diet. You might not have to try them again (like my potatoes). Or you might try them and find that it works because now your body is less burdened with poison.
I would like to say that you might learn the same things here, as some people participate in both networks, both Grant's and Dr. Garrett Smith. But, the other network is friendly, too and maybe more focused on additional protocols. (charcoal, how to increase beans, the detox bath, mineral supplements and testing, which foods have high A, trying to have more variety in the diet *if you wish*, other sources of toxicity, and other topics. If you have time and interest/need, I would recommend participate in both networks.
To emphasize a point from above: eliminate glyphosate--buy only "Organic" beans and grains and meats. This helps clear the detox pathway that also gets rid of A. Then work on adding soluble fiber--and you should work up slowly. Of course stop all eggs, pork, liver, dairy and additives of A, and the highest A foods. But, the process should be done carefully and slowly, because you can release A from tissue storage and then you need to get it OUT and not keep re-circulating it--which will cause you symptoms. We want to keep those symptoms low, regulate how much is being released from tissue, and get the stuff out the door. It is now often said it can take 2 years to get it out... it looks like a wide range of time.