On 10/28/2012 at 6:57 AM, CHIRON said:On 10/26/2012 at 10:31 AM, oli girl said:You need to find another doctor and not even mention accutane. Where do you live? A speckled ANA usually means lupus, however you had a postive Rhuematoid factor which usually means Rhuematoid Arthritis...In which did they test sed rate, etc... You should read up on some supplements that RA pts and Raynaud's pts do. Most are deficient in Vit D, B12, iron etc. Gluten free diet can help tremendously.
Autoimmune disorders can cause many of what your stated in this post. Read some of Lamarr1986 posts has he has lupus issues from Roaccutane and is treated by a physican who understands what roaccutane does, and he has done things
himself for raynaud's etc... Mine has kinda gotten better. Also rapid hair growth on the face, loss of hair, loss of periods can point to polycystic ovarian disorder and can cause weight gain on the lower body.
I understand your upset,but you need to calm down and find a new doctor and get help! I do a lot of holistic stuff, but considering I have autoimmune diabetes, and autoimmune thyroid disorder, loss in height and sjorgens (another autoimmune disorder) I have found that I have to take certian meds or I die! I will not let Roche win I keep going!!!!!!!!!!!
Lamarr- glad to see your post. Hope things are well [edited image out]
Hi Oli girl- I can attest to the gluten-free thing and have you heard anything about this - it's from this: [Edited linkout]
Epsom Salts & Autism
" In January I had the luck of attending a brain storming session (Rimland's Defeat Autism Now conf.). At that meeting was a British researcher, Rosemary Waring who was working in the field of alzheimers(originally), autism and migraine. She has found a fundamental enzyme shortage in all three of these populations, it is PST, phenol sulfer transferase. This enzyme has two functions, it ensures that your mucous membranes are ciaoted with a slimy surface to protect them and make them resilient (membranes of the gut, nose, ears etc.) It also helps to hydrolate (surround toxins with extra water molecules) toxins out of your body. If you don't have this, your body builds up with toxins, and also places like your gut can become permeable to undigested peptides from say gluten (wheat, oats, barley and rye) and casein( All milk products) these peptides then travel to the brain looking like pseudo neurotransmitters. Not good. So at the meeting I asked Rosemary how do I get PST in my kid assuming he's got a shortage. She said magnesium sulphate".
It appears to have a relationship to the systemic problems we experience for the most part and pre-empts the gluten intolerance itself. THese epsom salts immediately healed my hand eczema (an autoimmune disorder) when I either rub it into my hands with a little emu or coconut oil, or soak my hands in a bowl of water with epsom salts. Worth a try, anyway, right? As far as arthritis, the most effective (and happily, the most tasty) treatment I've encountered for my joint pain problems has been a popular home remedy of golden raisins that are covered in gin and left for a few days to soak up the liquid. I take 10 a day and haven't experienced any joint pain since. Both the golden raisins and the gin have properties that heal this stuff. See here.. [Edited link out]
Epsom salt is supposedly not the best source of magnesium, your body doesn't absorb it (thus the laxative effect). I am however taking a Magnesium Glycinate supplement, do you think it matters? Is the sulfate an important component in the creation of the "slimy" stuff, or is it more the magnesium?
I took 3 courses of accutane. cumulative 80mg/day for 12 months. so that's about 1mg/kg for 12 months. last dose was a little over a year ago.
i experienced a lot of join pain problems but that doesn't matter so much to me anymore. I think I have chronic fatigue syndrome. I have been in some phase of the common cold every day for at least a year. I don't bother searching for "sore throat and accutane". It's not allergies. It's the common cold. I would always get sick a lot as a kid but now it is never ending. I don't remember what it feels like to not have the common cold.
Ive had it hundreds of times since I was growing up and every time was exactly the same: it starts out with a sore throat, then runny nose, then nasal congestion, then a headache. these are the orders of the different phases of the cold from me. I heard a commercial once that said, "you know when you get that first sneeze and you know you're getting a cold?" No. I've never once in my life had a cold like that. it always starts with a sore throat.
So what I mean by constant is that sometimes I'm in the runny nose phase and it just reverts back to sore throat phase. So i'm at the beginning again. And sometimes im in the congestion/headache phase, when normally the cold ends. but when that happens it just starts over at sore throat phase again. it never stops. ever.
Part of me wonders if I was always like this but I'm just more sensitive now? But I don't think so. Here's what I take:
fish oil, flaxseed oil, vit d12, vit c, acidophalus, zinc, b vitamins. every day. I also try to eat healthy. Basically I am always tired and normally i can function when I get a lot of sleep. I try to sleep 10 hours a day but sometimes I sleep 12. How tired I am is always proportional to how sick i'm going to be. I also lift weights and appear athletic. sometimes i just lie down in my room and meditate, rest, get on the computer for a while, and eventually work out. i never feel that bad when I work out.
So how do I function? the past 6 months I haven't had to do much work. I didn't work that much over the summer and i'm graduating college soon. but I don't think i'll be able to tolerate having a job where i have to work 9-to-5. i'm scared because i don't think i'll be healthy enough to do it. basically i'm seriously considering killing myself when the time comes that i have to actually be productive during the day because i just can't be productive without getting really sick. i have some kind of immune system disorder. i spend a lot of time coming to grips with death. the main problem is that i dont want to ruin my parents lives.
i know what will happen when i go to a doctor because i was going to doctors for years for my joint problems. mri, xrays, physical therapy. no one really gave a shit and nothing really helped and i know its going to be the same for going to a doctor and telling him about this. overall the wild goose chase to fix my joint problems really just made me more depressed and angry and made me obsess about it more. so im afraid to start the process of trying to fix my immune system problems with a doctor.
im going to try a non-bread diet i guess. thats my current plan. i dont think it will do anything. any other advice?
EDIT: I don't even necessarily think this is CAUSED by accutane. i think i have always had psychological problems and immune system problems. my mom said she used to get very sick as a kid so I think its genetic. also I clearly had some kind of weird internal problems resulting in my outrageous acne. but i think accutane may have just made the immune system thing here worse. so id rather post this here than at a chronic fatigue syndrome forum
EDIT2: tonsilectomy? what do you think? although ive heard someone tell me they had this and it did nothing for their throat pain.
Epsom salt is supposedly not the best source of magnesium, your body doesn't absorb it (thus the laxative effect). I am however taking a Magnesium Glycinate supplement, do you think it matters? Is the sulfate an important component in the creation of the "slimy" stuff, or is it more the magnesium?
I really don't know which is better, but I do know that epsom salts can successfully treat many kinds of eczema and that the article I linked has cuttings from several different sources on epsom salts as a successful treatment of autism. The link between a lack of magnesium and gluten intolerance as well as its link to negatively affecting mucosal lining seems like it could apply to Accutane-related problems as well...I'm pretty sure that our bodies absorb magnesium well through the skin. I think epsom salts only cause a laxative effect when taken internally, and the skin is the easiest way to get the magnesium through the salts without a laxative effect. I would love to get magnesium from food sources but our soils are so depleted for the most part that sadly, supplementing seems to help way more in my experience. Magnesium helps in clearing toxins from the body which is one of the main benefits to autistics I've read. Magnesium deficiency is frequently caused by ulcerative colitis which, as we all know is a major long-term side effect of ol' Accutane.
i know what will happen when i go to a doctor because i was going to doctors for years for my joint problems. mri, xrays, physical therapy. no one really gave a shit and nothing really helped and i know its going to be the same for going to a doctor and telling him about this. overall the wild goose chase to fix my joint problems really just made me more depressed and angry and made me obsess about it more. so im afraid to start the process of trying to fix my immune system problems with a doctor.
im going to try a non-bread diet i guess. thats my current plan. i dont think it will do anything. any other advice?
EDIT: I don't even necessarily think this is CAUSED by accutane. i think i have always had psychological problems and immune system problems. my mom said she used to get very sick as a kid so I think its genetic. also I clearly had some kind of weird internal problems resulting in my outrageous acne. but i think accutane may have just made the immune system thing here worse. so id rather post this here than at a chronic fatigue syndrome forum
I used to get sick alot, too. I haven't been sick since going gluten-free, plus supplementing with vitamins A,B, C, D, E and K, as well as zinc when I feel a cold coming on. But yes the wheat-free option is a big help I believe. I also cut sugar and dairy out for the most part. All three cause inflammation. Try to see a naturepath (my insurance covers it, yours may too). It's kind of funny that my regular doctor refused to even write a referral to a naturepath and made some condescending remarks regarding the profession. So I was forced to switch my primary care doctor to a Naturepath instead of a standard "doctor". After one session with her, I learned more about fixing chronic problems through natural remedies than I learned from 15 different MDs in 15 years. It's not their fault really. They rely on pharmaceuticals because simple natural remedies simply can't be patented by companies, therefore there is no one to fund clinical trials, therefore most governments (all except Germany I believe) don't regulate them and don't approve of doctors prescribing them. The system is literally killing us. You might want to try iodine for depression. It has been the most effective remedy for balancing my weight, mood and increasing my energy levels. We were bullshitted into believing that supplementing with it isn't necessary because salt was iodized for a while. The FDA is corrupt and in bed with big pharmaceutical companies. Don't kill yourself, dude. You are right that it would do harm to your loved ones, I'm sure of this. I know the suffering you feel. I do. It's been 20 years since I took Accutane and for 17 of those years, I didn't know that Accutane was the cause of my problems. Like you said though: some of it is probably genetic propensity for certain ailments which is then exacerbated by Accutane use. You will heal from this. Perhaps not completely, but over a relatively short time, you can find ways to thrive in spite of these problems, like I have. One more thing: the sore throat. I get it primarily in the winter. It is much better if I turn off the heat at night, or when I use a humidifier. I recently moved from Vermont to South Carolina and I'm hoping that the weather will help my sore throats. Best...
I took 3 courses of accutane. cumulative 80mg/day for 12 months. so that's about 1mg/kg for 12 months. last dose was a little over a year ago.
i experienced a lot of join pain problems but that doesn't matter so much to me anymore. I think I have chronic fatigue syndrome. I have been in some phase of the common cold every day for at least a year. I don't bother searching for "sore throat and accutane". It's not allergies. It's the common cold. I would always get sick a lot as a kid but now it is never ending. I don't remember what it feels like to not have the common cold.
Ive had it hundreds of times since I was growing up and every time was exactly the same: it starts out with a sore throat, then runny nose, then nasal congestion, then a headache. these are the orders of the different phases of the cold from me. I heard a commercial once that said, "you know when you get that first sneeze and you know you're getting a cold?" No. I've never once in my life had a cold like that. it always starts with a sore throat.
So what I mean by constant is that sometimes I'm in the runny nose phase and it just reverts back to sore throat phase. So i'm at the beginning again. And sometimes im in the congestion/headache phase, when normally the cold ends. but when that happens it just starts over at sore throat phase again. it never stops. ever.
Part of me wonders if I was always like this but I'm just more sensitive now? But I don't think so. Here's what I take:
fish oil, flaxseed oil, vit d12, vit c, acidophalus, zinc, b vitamins. every day. I also try to eat healthy. Basically I am always tired and normally i can function when I get a lot of sleep. I try to sleep 10 hours a day but sometimes I sleep 12. How tired I am is always proportional to how sick i'm going to be. I also lift weights and appear athletic. sometimes i just lie down in my room and meditate, rest, get on the computer for a while, and eventually work out. i never feel that bad when I work out.
So how do I function? the past 6 months I haven't had to do much work. I didn't work that much over the summer and i'm graduating college soon. but I don't think i'll be able to tolerate having a job where i have to work 9-to-5. i'm scared because i don't think i'll be healthy enough to do it. basically i'm seriously considering killing myself when the time comes that i have to actually be productive during the day because i just can't be productive without getting really sick. i have some kind of immune system disorder. i spend a lot of time coming to grips with death. the main problem is that i dont want to ruin my parents lives.
i know what will happen when i go to a doctor because i was going to doctors for years for my joint problems. mri, xrays, physical therapy. no one really gave a shit and nothing really helped and i know its going to be the same for going to a doctor and telling him about this. overall the wild goose chase to fix my joint problems really just made me more depressed and angry and made me obsess about it more. so im afraid to start the process of trying to fix my immune system problems with a doctor.
im going to try a non-bread diet i guess. thats my current plan. i dont think it will do anything. any other advice?
EDIT: I don't even necessarily think this is CAUSED by accutane. i think i have always had psychological problems and immune system problems. my mom said she used to get very sick as a kid so I think its genetic. also I clearly had some kind of weird internal problems resulting in my outrageous acne. but i think accutane may have just made the immune system thing here worse. so id rather post this here than at a chronic fatigue syndrome forum
EDIT2: tonsilectomy? what do you think? although ive heard someone tell me they had this and it did nothing for their throat pain.
Accutane is known to effect the immune system. There are many stories of people who are taking Accutane or after who are sick alot esspecially with sinus issues. Even if you had issues before it would just enhance the problem more. I agree with what Chiron stated in his post about gluten free and supplements.
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
A great hydration technique I learned, was a fad in Japan at some point. I was having kidney stones and frequently waking up at night to urinate. This remedy fixed my problems almost overnight: As soon as you wake up in the morning, drink 3 tall glasses of water. You don't need to chug, just drink over a period of 5 to 10 minutes. This rehydrates your body after a long sleep where you were getting no liquids. Pretty simple, but truly effective. Have you tried washing your face with dove soap? Also obviously, an oil-free moisture cream afterward eliminates the tendency to get acne while rehydrating your skin. My nose gets dry. You might want to try humidifying your room at night or simply some vaseline in your nostrils.
Epsom salt is supposedly not the best source of magnesium, your body doesn't absorb it (thus the laxative effect). I am however taking a Magnesium Glycinate supplement, do you think it matters? Is the sulfate an important component in the creation of the "slimy" stuff, or is it more the magnesium?
I really don't know which is better, but I do know that epsom salts can successfully treat many kinds of eczema and that the article I linked has cuttings from several different sources on epsom salts as a successful treatment of autism. The link between a lack of magnesium and gluten intolerance as well as its link to negatively affecting mucosal lining seems like it could apply to Accutane-related problems as well...I'm pretty sure that our bodies absorb magnesium well through the skin. I think epsom salts only cause a laxative effect when taken internally, and the skin is the easiest way to get the magnesium through the salts without a laxative effect. I would love to get magnesium from food sources but our soils are so depleted for the most part that sadly, supplementing seems to help way more in my experience. Magnesium helps in clearing toxins from the body which is one of the main benefits to autistics I've read. Magnesium deficiency is frequently caused by ulcerative colitis which, as we all know is a major long-term side effect of ol' Accutane.
i know what will happen when i go to a doctor because i was going to doctors for years for my joint problems. mri, xrays, physical therapy. no one really gave a shit and nothing really helped and i know its going to be the same for going to a doctor and telling him about this. overall the wild goose chase to fix my joint problems really just made me more depressed and angry and made me obsess about it more. so im afraid to start the process of trying to fix my immune system problems with a doctor.
im going to try a non-bread diet i guess. thats my current plan. i dont think it will do anything. any other advice?
EDIT: I don't even necessarily think this is CAUSED by accutane. i think i have always had psychological problems and immune system problems. my mom said she used to get very sick as a kid so I think its genetic. also I clearly had some kind of weird internal problems resulting in my outrageous acne. but i think accutane may have just made the immune system thing here worse. so id rather post this here than at a chronic fatigue syndrome forum
I used to get sick alot, too. I haven't been sick since going gluten-free, plus supplementing with vitamins A,B, C, D, E and K, as well as zinc when I feel a cold coming on. But yes the wheat-free option is a big help I believe. I also cut sugar and dairy out for the most part. All three cause inflammation. Try to see a naturepath (my insurance covers it, yours may too). It's kind of funny that my regular doctor refused to even write a referral to a naturepath and made some condescending remarks regarding the profession. So I was forced to switch my primary care doctor to a Naturepath instead of a standard "doctor". After one session with her, I learned more about fixing chronic problems through natural remedies than I learned from 15 different MDs in 15 years. It's not their fault really. They rely on pharmaceuticals because simple natural remedies simply can't be patented by companies, therefore there is no one to fund clinical trials, therefore most governments (all except Germany I believe) don't regulate them and don't approve of doctors prescribing them. The system is literally killing us. You might want to try iodine for depression. It has been the most effective remedy for balancing my weight, mood and increasing my energy levels. We were bullshitted into believing that supplementing with it isn't necessary because salt was iodized for a while. The FDA is corrupt and in bed with big pharmaceutical companies. Don't kill yourself, dude. You are right that it would do harm to your loved ones, I'm sure of this. I know the suffering you feel. I do. It's been 20 years since I took Accutane and for 17 of those years, I didn't know that Accutane was the cause of my problems. Like you said though: some of it is probably genetic propensity for certain ailments which is then exacerbated by Accutane use. You will heal from this. Perhaps not completely, but over a relatively short time, you can find ways to thrive in spite of these problems, like I have. One more thing: the sore throat. I get it primarily in the winter. It is much better if I turn off the heat at night, or when I use a humidifier. I recently moved from Vermont to South Carolina and I'm hoping that the weather will help my sore throats. Best...
thanks for your advice. so what do you normally eat on your gluten-free diet (aka what to avoid)? also im afraid taking more vitamin A will be bad for me, so i avoid multivitamins. or is that only DURING accutane usage? also how do you supplement your diet with iodine? and how long after your gluten-free diet did it take to see results? also the only vitamin you listed that i do not take is K. what benefits do you think youve gotten from this? any other advice from your naturepath youd be willing to share? thanks if you have time to answer any of these questions.
I drink water NON stop. At least 2 L a day. spring water, sometimes filtered, sometimes mineral water.
Ive been told anymore than 2 L and you are flushing proteins & nutrients needlessly out of your system. Opinions??
I dont have a humidifier, but will look at getting one. because the dehydration is internal I dont know if it would help but anything is worth a shot. I use oils to cleanse now - jojoba & THC oil. I use Osmosis products which have stem cells and healing enzymes etc. No effect whatsoever.
Ive spent hundreds on every kind of moisturizer known to man with no relief.
Im so freaked out because I cant find anyone else experiencing this to the degree I am.
I cannot find another woman thats 53KG that was put on 40:60 for 12 mnths either... Or another woman who's hair continuously fell out for 2 yrs after tx....
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
A great hydration technique I learned, was a fad in Japan at some point. I was having kidney stones and frequently waking up at night to urinate. This remedy fixed my problems almost overnight: As soon as you wake up in the morning, drink 3 tall glasses of water. You don't need to chug, just drink over a period of 5 to 10 minutes. This rehydrates your body after a long sleep where you were getting no liquids. Pretty simple, but truly effective. Have you tried washing your face with dove soap? Also obviously, an oil-free moisture cream afterward eliminates the tendency to get acne while rehydrating your skin. My nose gets dry. You might want to try humidifying your room at night or simply some vaseline in your nostrils.
thanks for your advice. so what do you normally eat on your gluten-free diet (aka what to avoid)? also im afraid taking more vitamin A will be bad for me, so i avoid multivitamins. or is that only DURING accutane usage? also how do you supplement your diet with iodine? and how long after your gluten-free diet did it take to see results? also the only vitamin you listed that i do not take is K. what benefits do you think youve gotten from this? any other advice from your naturepath youd be willing to share? thanks if you have time to answer any of these questions.
The gluten-free diet I followed was also sugar free and dairy free for three months. Now I eat some natural sugars like honey, etc. You can eat: meat, green vegetables and grains that have no gluten like millet and quinoa. Also for sweets, I use stevia, an herbal sweetener. I felt results within 36 hours. Big results. Increased energy, lessened muscle fatigue and pain, and healthier feeling. Others I know did it too. Same results, and they hadn't even done Accutane...I followed a book called "Body Ecology": https://www.google.c...chrome&ie=UTF-8 there is a section with recipies. I don't bother with all the supplements she sells, but the book was fantastic. She actually suffered from anti-biotics poisoning as a result of acne treatment. Anyhow, it will break everything down for you. That is the first thing my Naturepath told me about and it worked. You sound like you are definitely celiacs dude, so you should definitely try it. I tested negative for celiacs by my "doctor". Don't rely on tests. Just try it. And the sugar thing matters. As far as dairy, quitting that has been linked to acne clearing and even a cure for autism. Something about gluten in wheat and the casein in milk causing the immune system to attack the gut, rendering it useless as an absorber of nutrients. Thus we get sick. The US Airforce recently compared blood samples of recruits from the 1950s and the 2000s. They found evidence that gluten intolerance is four times more prevalent today as it was in the '50's. It has to be chemical fertilizers, poor soil and any number of other chemicals in our environment that is causing this.
Vitamin K has many benefits. It is one of the fat soluable vitamins, like A and D. Since the intake of both A and D are effected by Accutane use, I thought I'd try K too for bone and heart health among other things. Actually Accutane, because it is synthetic, causes vitamin A deficiency rather than simply overdose. So I supplement with beta carotene in a food based form. It seems to help with poor night vision and other things. Fish oil -the real stuff, not the highly processed with caustic chemical stuff - is something that helps with dry eyes and other things. It contains a balance of A and D, as well as Omega 3 and 6s. This is all basic stuff that our bodies use to produce everything else downstream. that is why when gluten interferes with the uptake of nutrients, you feel so lousy. Beta Carotene, anyway is only converted to vitamin A in the body in amounts that are required. Everything extra is flushed. There is no chance of overdose. Combined with E, it is beneficial. B vitamins are necessary for so many functions. I never take a MULTI vitamin though. Mostly they contain lower quality ingredients, plus everything at the same time isn't good for absorption. Many of these things compete with each other for absorption and you end up flushing a lot of them out. They always make me feel nauseous too. I get high quality vitamins and minerals and don't usually take them all every day. My NP said that I should take high doses of vitamin D in order to increase levels in my system for a couple months, then stop for a couple months. I'm still figuring things out. Vitamin C and zinc usually knocks a cold out before it starts if I double up on it at the first sign of a cold...
As for the iodine. I take, every day, a liquid form. Like 4 drops in water or whatever your bottle says. It isn't a cure all but because it treats the thyroid, it helps to bring hormones into balance. For some reason, Accutane disturbs the thyroid from what I understand of it. I have noticed that my eyes look more calm, I am not bloated anymore, and I feel much more energy and happiness. My moisture in eyes and lungs has increased a lot from iodine. Can't explain it, but I do know that iodine has been around and used successfully for hundreds of years. the Japanese have virtually zero hypothyroidism because they eat a lot of sea kelp which contains iodine. You might look for a kelp-based form. Also, I would recommend taking vitamin E with Selenium at the same time. Selenium protects the thyroid from any potential damage from immunological thyroid issues and iodine. I also suggest that you do some research on your own.
If I think of anything more, I'll share. Good Luck.
I drink water NON stop. At least 2 L a day. spring water, sometimes filtered, sometimes mineral water.
Ive been told anymore than 2 L and you are flushing proteins & nutrients needlessly out of your system. Opinions??
I dont have a humidifier, but will look at getting one. because the dehydration is internal I dont know if it would help but anything is worth a shot. I use oils to cleanse now - jojoba & THC oil. I use Osmosis products which have stem cells and healing enzymes etc. No effect whatsoever.
Ive spent hundreds on every kind of moisturizer known to man with no relief.
Im so freaked out because I cant find anyone else experiencing this to the degree I am.
I cannot find another woman thats 53KG that was put on 40:60 for 12 mnths either... Or another woman who's hair continuously fell out for 2 yrs after tx....
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
A great hydration technique I learned, was a fad in Japan at some point. I was having kidney stones and frequently waking up at night to urinate. This remedy fixed my problems almost overnight: As soon as you wake up in the morning, drink 3 tall glasses of water. You don't need to chug, just drink over a period of 5 to 10 minutes. This rehydrates your body after a long sleep where you were getting no liquids. Pretty simple, but truly effective. Have you tried washing your face with dove soap? Also obviously, an oil-free moisture cream afterward eliminates the tendency to get acne while rehydrating your skin. My nose gets dry. You might want to try humidifying your room at night or simply some vaseline in your nostrils.
You aren't going to have sucess with anythin g unless you get some help for the postive lab work you have had done! I will send you a pm in the next day or 2. By the way I was only 115-120 pds last dose was 100mg. However, for some of the dryness and many RA pts have had sucess with GLA in Borage oil form... I believe you responded on a postive RA factor.
Hey Jen,
You mean the RF rheumatoid factor?
So you suspect that and the ANA that was positive have alot to do with what I'm going through as far as hair & skin issues?
For everything to be fine ( aside from my hair of course) until May this year there has to be some reason I agree. Im so confused...........
have you ever heard of these skin issues cropping up like this so long after tx or any reason as to why?
I drink water NON stop. At least 2 L a day. spring water, sometimes filtered, sometimes mineral water.
Ive been told anymore than 2 L and you are flushing proteins & nutrients needlessly out of your system. Opinions??
I dont have a humidifier, but will look at getting one. because the dehydration is internal I dont know if it would help but anything is worth a shot. I use oils to cleanse now - jojoba & THC oil. I use Osmosis products which have stem cells and healing enzymes etc. No effect whatsoever.
Ive spent hundreds on every kind of moisturizer known to man with no relief.
Im so freaked out because I cant find anyone else experiencing this to the degree I am.
I cannot find another woman thats 53KG that was put on 40:60 for 12 mnths either... Or another woman who's hair continuously fell out for 2 yrs after tx....
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
A great hydration technique I learned, was a fad in Japan at some point. I was having kidney stones and frequently waking up at night to urinate. This remedy fixed my problems almost overnight: As soon as you wake up in the morning, drink 3 tall glasses of water. You don't need to chug, just drink over a period of 5 to 10 minutes. This rehydrates your body after a long sleep where you were getting no liquids. Pretty simple, but truly effective. Have you tried washing your face with dove soap? Also obviously, an oil-free moisture cream afterward eliminates the tendency to get acne while rehydrating your skin. My nose gets dry. You might want to try humidifying your room at night or simply some vaseline in your nostrils.
You aren't going to have sucess with anythin g unless you get some help for the postive lab work you have had done! I will send you a pm in the next day or 2. By the way I was only 115-120 pds last dose was 100mg. However, for some of the dryness and many RA pts have had sucess with GLA in Borage oil form... I believe you responded on a postive RA factor.
I'm praying that because All my issues with akin have only started over the last 6 months that it is temporary and will improve with time but the deterioration has been so rapid that I don't know what to make of it and keep thinking it must have been triggered by supplements or sitting under one if those hair laser lights which I did twice a week from Jan till march it was late April early may that I became aware of my skin issues and since then it's been all down hill. Ive tried so many things and nothing has helped up to this point. Do you produce oil now at least? My hair is the biggest indicator and it's present state is so godamn dry on the ends so I know I am not producing any oil to hydrate my hair or skin. I pray for us all...
I know too little about the laser hair thing. That is supposed to help regrow hair, right? I have had good luck treating things with less "technologically advanced methods". Although, even with "natural" cures one must be extremely careful. Anyhow, thank you for your prayers, keep them coming. Right back at you...
I drink water NON stop. At least 2 L a day. spring water, sometimes filtered, sometimes mineral water.
Ive been told anymore than 2 L and you are flushing proteins & nutrients needlessly out of your system. Opinions??
I dont have a humidifier, but will look at getting one. because the dehydration is internal I dont know if it would help but anything is worth a shot. I use oils to cleanse now - jojoba & THC oil. I use Osmosis products which have stem cells and healing enzymes etc. No effect whatsoever.
Ive spent hundreds on every kind of moisturizer known to man with no relief.
Im so freaked out because I cant find anyone else experiencing this to the degree I am.
I cannot find another woman thats 53KG that was put on 40:60 for 12 mnths either... Or another woman who's hair continuously fell out for 2 yrs after tx....
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
A great hydration technique I learned, was a fad in Japan at some point. I was having kidney stones and frequently waking up at night to urinate. This remedy fixed my problems almost overnight: As soon as you wake up in the morning, drink 3 tall glasses of water. You don't need to chug, just drink over a period of 5 to 10 minutes. This rehydrates your body after a long sleep where you were getting no liquids. Pretty simple, but truly effective. Have you tried washing your face with dove soap? Also obviously, an oil-free moisture cream afterward eliminates the tendency to get acne while rehydrating your skin. My nose gets dry. You might want to try humidifying your room at night or simply some vaseline in your nostrils.
You are right that too much water isn't good. In fact, the reason I told you to not guzzle the water at one time is because I was starting to get indigestion from all the liquid in my stomach, which incidentally can be helped with a teaspoon of apple cider vinegar mixed with a half teaspoon of baking soda (plus water)...But I'd like to re-emphasize the importance of drinking a lot of water when you first wake up. That made a difference for me, where drinking all day didn't as much. Something about how our bodies are more receptive to hydration at that time. If I wake up with dry eyes, after I drink a couple glasses of water, my eyes immediately improve substantially. Do you exercise at all? I am pretty bad about it, but I feel much better overall when I get into something like that (and out of my head).
Hey Jen,
You mean the RF rheumatoid factor?
So you suspect that and the ANA that was positive have alot to do with what I'm going through as far as hair & skin issues?
For everything to be fine ( aside from my hair of course) until May this year there has to be some reason I agree. Im so confused...........
have you ever heard of these skin issues cropping up like this so long after tx or any reason as to why?
I drink water NON stop. At least 2 L a day. spring water, sometimes filtered, sometimes mineral water.
Ive been told anymore than 2 L and you are flushing proteins & nutrients needlessly out of your system. Opinions??
I dont have a humidifier, but will look at getting one. because the dehydration is internal I dont know if it would help but anything is worth a shot. I use oils to cleanse now - jojoba & THC oil. I use Osmosis products which have stem cells and healing enzymes etc. No effect whatsoever.
Ive spent hundreds on every kind of moisturizer known to man with no relief.
Im so freaked out because I cant find anyone else experiencing this to the degree I am.
I cannot find another woman thats 53KG that was put on 40:60 for 12 mnths either... Or another woman who's hair continuously fell out for 2 yrs after tx....
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
A great hydration technique I learned, was a fad in Japan at some point. I was having kidney stones and frequently waking up at night to urinate. This remedy fixed my problems almost overnight: As soon as you wake up in the morning, drink 3 tall glasses of water. You don't need to chug, just drink over a period of 5 to 10 minutes. This rehydrates your body after a long sleep where you were getting no liquids. Pretty simple, but truly effective. Have you tried washing your face with dove soap? Also obviously, an oil-free moisture cream afterward eliminates the tendency to get acne while rehydrating your skin. My nose gets dry. You might want to try humidifying your room at night or simply some vaseline in your nostrils.
You aren't going to have sucess with anythin g unless you get some help for the postive lab work you have had done! I will send you a pm in the next day or 2. By the way I was only 115-120 pds last dose was 100mg. However, for some of the dryness and many RA pts have had sucess with GLA in Borage oil form... I believe you responded on a postive RA factor.
Do not self diagnose. Test results might be deceptive. You might start showing the symptoms if you believe in the diagnosis. Human brain is sophisticated. Ask for professional help.
Has anyone out there experienced the side effects that were dealyed till WAY after treatment?
Im not sure i follow. How long time did it take since you stopped taking, it untill you got the sideeffects?
No side effects while on it?
My sideffects also topped after i quit, but not very long after.
edit: also, the sleep disturbances, have you been checked for reflux and hiatial hernia?.
I feel worse when i lay down, especially after some time, impossible to get sufficient sleep. Lately i have felt there is a connection between my aquired reflux and insomnia which both started on isotretinoin and never went away. Took a while too really feel the connection because the eroding is gradual, but now, really, when i wake up, it hurts badly. Having to sit when i sleep, fun being 25!, not exactly how i pictured myself two years ago.
If you also got the twitching and stuff, take some B-complex and b12(preferrably the methyl kind). D3 and magnesium has helped me with weird sensations also. fish oil also, in big dosages. Dont be too afraid to overdoo anything really, the dosages of poison we have been taking are much larger.
you could also try staying of gluten for a while. I used to eat a whole bread a day, now i get heart palpitations from one slice. Took a long time before i saw that connection also.
Im really wondering if the rest of my problems are down to my damaged stomach and hiatial hernia. Healing my stomach might fix my sleep. My sleep might fix alott of things. Gotta fix the stomach.. Reading about the Collagen matrix. Fucked up stomach, fucked up skin, connection...
Ok, I stopped roaccutane in Dec'10. Doseage was 40:60 mg's alternating for 12 months. Mild acne.3 months after hairloss began, has steadily worsened. Has become so dry & brittle and just fals out at the roots. minimal regrowth of poor quality, Ive lost at least 70 % of my hair. I struggle everyday to conceal the thin crown, but scalp show on the sides of my head.
So here I am 18 months after & now my skin started drying out - like not a drop of oil on my face. This started 6 months ago. Skin fragility, incredibly poor healing, mottled & discoloured skin. Fat loss on face - really bad, hollow eyes, cheeks. I seriously look like Im dying. Skin is so tight, dehydrated, fine lines all over my face - especially on my cheeks & undereyes. I feel & look horendous.
Dry skin is now all over my body. currently taking vit C, Vit E, EPO, Flax seeds & at least 2 L of water everyday everyday - no results at all.
Ive tried so many supp's, no results.
This is looking to be not only permanant, but progressing rapidly and Im deeply depressed & terrified for the future. I used to love my life.
Suicide seems like the only way out.
I have the same thing, intense dryness all over my body, my hair has fell out in the past, but i managed to stop that. I have sebborheic dermatitis all over my face and scalp, joint cracking the lot. Look at the relationship between the foods you eat and the side effects, i find eating retinol makes my skin tightness worse, i get a flushed very red face and i feel heat coming from my skin when i eat those foods. Not to say they should be cut out completely, i'm actually experimenting with natural vitamin A foods and how i react, but for you it's something you should be mindful of. Cut out chocolate, bread, gluten in general really and eat only 100% natural foods. I call it "one ingrediant foods" if the food has a list of ingrediants don't buy it. These are the list of good foods - Fruit, vegetables, root vegetables, brown rice, oats, spices, water, green tea, meat, lean fish, shellfish (scallops etc), beans, legumes. Stay away from dairy including raw milk, butter etc...in my experience i dont do well on nuts and seeds...don't know why I just don't. So i dont eat mixed nuts or flax seeds etc. Drink lots of water try for 8 pints a day of filtered or spring water just to help your body remove toxins.
Supplement wise Vitamin D3 is the only one i'd personally recommend...and others say liquid kelp or kelp capsules. There is a relationship between Vitamin A, Vitamin D and the thyroid gland. Thats something i would start with.
Don't think about suicide, it's a waste of time and it only drains your body of the energy you need to fight back. You need to create a positive mindset to move forward and things will start to get better from that mental switch onwards. I've suffered with this since i was 17, i'm 26 now. I went through the trying to kill myself phase even tried to cut my wrists....my family were terrified and i was put on anti depressants the whole works. I don't take prescription drugs now and haven't for many years, use accutane as a catalyst to realise what prescription drugs can do to your body. Eat clean, stay away from doctors and know that you are not going to die. It doesn't get any worse than this i promise you, so it's really about making it better slowly but surely. The suicidal mindset has to be the first thing to overcome, and this goes for all of us on this forum, accept whats happened to you (i mean totally accept it however hard, forget about what you were before all this, and forgive yourself first and formost but the others you also hold responsible)
"I think self-pity is the worst possible emotion anyone can have. And the most destructive. It is ,to slightly paraphrase what Wilde said about hatred, and I think that hatred is a subset of self-pity, not the other way around, it destroys everything around it except itself. Selfpity will destroy relationships, itll destroy anything thats good, it will fulfil all the prophecies it makes and leave only itself." - Stephen Fry
Stephen Fry tried to kill himself in a garage by choking on exhaust fumes from his car, so that statement comes from a true place of honesty, and i know in my life it is the truth. 1. is Mindset, everything will start from that place. Diet, supplements are no quick fix, it's the mindset that gives you the fuel to continue, but also gives your body the break it needs.
Hey Jen,
You mean the RF rheumatoid factor?
So you suspect that and the ANA that was positive have alot to do with what I'm going through as far as hair & skin issues?
For everything to be fine ( aside from my hair of course) until May this year there has to be some reason I agree. Im so confused...........
have you ever heard of these skin issues cropping up like this so long after tx or any reason as to why?
I drink water NON stop. At least 2 L a day. spring water, sometimes filtered, sometimes mineral water.
Ive been told anymore than 2 L and you are flushing proteins & nutrients needlessly out of your system. Opinions??
I dont have a humidifier, but will look at getting one. because the dehydration is internal I dont know if it would help but anything is worth a shot. I use oils to cleanse now - jojoba & THC oil. I use Osmosis products which have stem cells and healing enzymes etc. No effect whatsoever.
Ive spent hundreds on every kind of moisturizer known to man with no relief.
Im so freaked out because I cant find anyone else experiencing this to the degree I am.
I cannot find another woman thats 53KG that was put on 40:60 for 12 mnths either... Or another woman who's hair continuously fell out for 2 yrs after tx....
Has anyone had the body wide dryness come on over a year later after stopping? ( skin,hair,mouth,nose etc)
Has anyone had the severe dry skin/ hair and successfully recovered from that? what about skin thinning, has anyone here had it/ reversed it/ tried to treat it?
What about your face going darker from dehydration has anyone experienced that?
A great hydration technique I learned, was a fad in Japan at some point. I was having kidney stones and frequently waking up at night to urinate. This remedy fixed my problems almost overnight: As soon as you wake up in the morning, drink 3 tall glasses of water. You don't need to chug, just drink over a period of 5 to 10 minutes. This rehydrates your body after a long sleep where you were getting no liquids. Pretty simple, but truly effective. Have you tried washing your face with dove soap? Also obviously, an oil-free moisture cream afterward eliminates the tendency to get acne while rehydrating your skin. My nose gets dry. You might want to try humidifying your room at night or simply some vaseline in your nostrils.
You aren't going to have sucess with anythin g unless you get some help for the postive lab work you have had done! I will send you a pm in the next day or 2. By the way I was only 115-120 pds last dose was 100mg. However, for some of the dryness and many RA pts have had sucess with GLA in Borage oil form... I believe you responded on a postive RA factor.
You also said I believe in your msg to me that you had abnormal thyroid levels and nodules on the thyroid. Usually this means Hasimoto's and a postive ANA can be for thyroid too, but you have a postive RF factor so the 2 can run together. **Note Autoimmune thyroid is not the same as just having hypothyroid******
Yes, if you research thyroid Hasimotos and Rhuematoid you will see your hair and skin issues. I agree with what most everyone has told you including me. However, wether Accutane caused your issues or not you have postive labs that point to diseases and thoose must be addressed!
To the person that had 70% hairloss, if your hair is still falling out try focusing on liver herbs as that stopped my hair falling out. Things like gentian, artichoke, dandelion, milk thistle, black radish, bupleurum, try and get something with as many of these as possible. UDCA / TUDCA is very powerful as well but see were the natural route takes you first i had success with herbal liver tinctures in relation to my hairloss, other people on this forum have not had the same success so to each his own but liver tinctures, d3, and thyroid herbs are the ones i'd look into first.
Hi Chico, thanks for your response.
What was your dosage/duration?
It seems quote apparent the vast majority of us were over prescribed to high or a dosage & or length or time on it.
My body externally is just drying up like an old boot so my hair is a sure fire indicator of the desert terrain that is my insides, as well as my skin.
Jen - endocrinologist says there's nothing to treat. That so many people have nodules & have no issues.
Most recent tests showed: TSH: 0.45 ( range - 0.5 - 4.5), FT4 - 18 ( range 10-20), FT3 5.4 ( range: 3.5 - 6.0) - antibodies are 46 (<60) so within normal, and Anti Thyroidal peroxidase Abs were 98 (<60) so high.
After 18 mnths of losing hair there's been minimal regrowth, it just continues to shed non stop while my skin becomes tighter & dryer and more uncomfortable everyday.
I'm concerned about mixed connective tissue disease.
Well I went through the phase of if things continue like they have I am most likely not going to get very old and probably soon die of cancer. I had this feeling for quite some time, actually for a couple of years as my situation did not improve at all, quite the opposite was the case. At some point this feeling motivated me to leave my comfort zone and to try things that had not been an option before. I had already cut out sugar and dairy at that point. What did I do? Heavy liver flushing combined with colon hydro theraphy and this was the turning point for me.
Hi Chico, thanks for your response.
What was your dosage/duration?
It seems quote apparent the vast majority of us were over prescribed to high or a dosage & or length or time on it.
My body externally is just drying up like an old boot so my hair is a sure fire indicator of the desert terrain that is my insides, as well as my skin.
Jen - endocrinologist says there's nothing to treat. That so many people have nodules & have no issues.
Most recent tests showed: TSH: 0.45 ( range - 0.5 - 4.5), FT4 - 18 ( range 10-20), FT3 5.4 ( range: 3.5 - 6.0) - antibodies are 46 (<60) so within normal, and Anti Thyroidal peroxidase Abs were 98 (<60) so high.
After 18 mnths of losing hair there's been minimal regrowth, it just continues to shed non stop while my skin becomes tighter & dryer and more uncomfortable everyday.
I'm concerned about mixed connective tissue disease.
80mg for about a year, maybe slightly over a year in duration (it's been a long time ), supervised by a dermatologist with regular blood drawn to check the liver.
By the way everyone - I contacted the pharmacy that dispensed the prescription to determine exact cumulative dosage.
12 boxes of 20 mg. Weight 54kg = 14,400 mg.cumulative dosage.
Now - I understand from what I've read that the absorption is INCREASED when taken with food.
I was never instructed to do so and took it with water or tea or something, does anyone have any theories on the medication being absorbed and metabolized more thoroughly without being taken by food - I honestly think that the reason I have been so badly affected is due to the way its been absorbed.
I know "they" say that food decreases the level of absorption, but I feel it may be the opposite and directions to take it food are to actually DECREASE the absorption directly into tissues. Roche are hardly going to inform people of the direct damage to tissue now are they....opinions???
the 100 pages and 2000 replies are almost complete, we should have a party, who is going to invite us over?
e-Party!... lol.
Believe, I was wondering if you could thoroughly go through what has worked for you and maybe what hasn't. I'm interested in the colon hydrotherapy.
What has worked for me:
- High-fat, low carb: Animal fats, nuts, fish, olive oil, coconut oil (NOT hydrogenated crap)
- Plenty of vegetables
- Vitamin D: helps skin, joint pain, bones, hair
- Kelp: helps thyroid (energy), bones, hair
- selenium: helps thyroid, hair
- Hyaluronic acid: helps joint pain
On 10/31/2012 at 8:20 AM, Livetoregret said:Hi Chico, thanks for your response.
What was your dosage/duration?
It seems quote apparent the vast majority of us were over prescribed to high or a dosage & or length or time on it.
My body externally is just drying up like an old boot so my hair is a sure fire indicator of the desert terrain that is my insides, as well as my skin.
Jen - endocrinologist says there's nothing to treat. That so many people have nodules & have no issues.
Most recent tests showed: TSH: 0.45 ( range - 0.5 - 4.5), FT4 - 18 ( range 10-20), FT3 5.4 ( range: 3.5 - 6.0) - antibodies are 46 (<60) so within normal, and Anti Thyroidal peroxidase Abs were 98 (<60) so high.
After 18 mnths of losing hair there's been minimal regrowth, it just continues to shed non stop while my skin becomes tighter & dryer and more uncomfortable everyday.
I'm concerned about mixed connective tissue disease.
Okay So reading through your posts this is what I have got! You have positive ANA, Positive Autoimmune thyroid antibodies, Postive RF Factor (Rhuematoid) a abnormal TSH ( 0.5 is 0.50), You say that Drs say many people have nodules and no issues....THE PROBLEM IS YOU ARE HAVING ISSUES!!!!!!!!!!!!!!!
My advice to you is the same you need to research Hasimoto's and you need to go back to your Endo or find an New one!!!!! Hasimoto pts go through a hyper thyroid stage as it is attacking the thyroid,until it is destroyed and you develop a goiter. Hasimotos is a lot easier to treat then Grave's. Also Nodules in the thyroid can produce and spew TSH and cause hyperthyroid also.... Did they do a uptake scan?????
Hasimoto's symptoms:
1. [Edited link out]
2. [Edited link out]
(good read)
(huge website that has fourms/info and such)
Hasimotos's can cause Raynaud's etc.... Do research!!!! I always say I don't if I am lucky that my labs were off and I developed diseases from accutane or would it have been to have all theese issues and symptoms and normal labs....You have positive labs and symptoms you just need to get to the a phsyican tell him you symptoms, so him your previous labs and get some help, along with a good diet, exercise, supplements you will feel better, until then you won't. [Edited image out]
On 10/31/2012 at 10:06 AM, Livetoregret said:By the way everyone - I contacted the pharmacy that dispensed the prescription to determine exact cumulative dosage.
12 boxes of 20 mg. Weight 54kg = 14,400 mg.cumulative dosage.
Now - I understand from what I've read that the absorption is INCREASED when taken with food.
I was never instructed to do so and took it with water or tea or something, does anyone have any theories on the medication being absorbed and metabolized more thoroughly without being taken by food - I honestly think that the reason I have been so badly affected is due to the way its been absorbed.
I know "they" say that food decreases the level of absorption, but I feel it may be the opposite and directions to take it food are to actually DECREASE the absorption directly into tissues. Roche are hardly going to inform people of the direct damage to tissue now are they....opinions???
It's asorbed more if taken with fatty foods! I had a total of 17,500mg cumulative dosage at 1115-120pds!
I've been experimenting with natural cod liver oil, taking 2ml twice a day and boom within 10 minutes, face gets tight, rosacea all over my face and that pulsating burning sensation below the skin. Skin is hot to touch, dryness in my eyes, mucous membranes, dryness all over my body and my eyes look slightly bloodshot (redveins in them). I look like shit.....hair looks frail and brittle, no oil whatsoever on my face, like a drugged up shrivelled prune with a pulsating red face. Skin condition starts cracking up after about a week or so on cod liver oil, not in a good way...in a zero moisture kind of desert valley way. There is no moisture in my eyes so they sting.
Powdered and capsule kelp does nothing for me, i feel it's a waste of time. The liqua kelp might be different because it contains potassium iodine, which is synthetic but it's what they use in nuclear radiation fallout to protect the thyroid. The guy that recomended that said 3 drops a day and thats easily enough. I cant comment on it's effectiveness because i haven't really bothered with the liqua kelp as i've been taking capsules. Caps are a waste of money in my opinion.
Water does something, i'm totally parched it feels like my whole insides are drying out, so drinking 2 litres of water in one sitting has cooled me down abit. I think water has replenished a small bit of the chronic systematic dehydration. I really wanna try Hyaluronic acid as i'm convinced it will mitigate some of the dryness side effects from the reaction to vitamin A. One molecule of hyaluronic acid holds hundreds of molecules of water, so they both have to go hand in hand.....loads of water for me.
Heavy duty liver protectors as well, the big guns, milk thistle isn't gonna do much whilst i'm taking this cod liver oil, so stronger than that.