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It's because we are dealing with the brain (which we know little about), cells on the cellular level, and genetic transcription. So many variables with Retinoid toxicity. It's all in the scientific literature, but doesn't help most doctors with practices who are not theoretical doctors working on studies. What we need are scientists who are all hired by pharma companies. The red tape between scientist and patient is so long, even if we take a company to court, we will never talk to an objective scientist. The only thing that angers me the most is the silence by Roche and the unwillingness to help. We have to pay out of our pockets to get help.
34 minutes ago, macleod said:It's because we are dealing with the brain (which we know little about), cells on the cellular level, and genetic transcription. So many variables with Retinoid toxicity. It's all in the scientific literature, but doesn't help most doctors with practices who are not theoretical doctors working on studies. What we need are scientists who are all hired by pharma companies. The red tape between scientist and patient is so long, even if we take a company to court, we will never talk to an objective scientist. The only thing that angers me the most is the silence by Roche and the unwillingness to help. We have to pay out of our pockets to get help.
Precisely!!
Thats why I sarcastically ask every time someone posts a scientific study on retinoids that it was conducted by Roche, like they're working round the clock to find out exactly how Accutane works and how they can help us - yeah right....,
I know full well that they aren't which only fuels my anger and makes me totally unapologetic when I go to the doctors and raise what's going on. These days I even talk to doctors like I'm talking on behalf of this group, there's enough of us suffering so why not talk as a victim of a group, I have no issue with that at all.
And if something bad was to ever happen to Roche I would just laugh my arse off for they've had decades to show a willingness to help this situation yet have done Nothing!!!
They can rot in hell....
I have a question, do we know precisely, what is in Isotretinoin? I mean is it just 200,000+ iu of Vitamin A? Are there any added ingredients that we're missing? I think first step right now would be get a hold of some original Isotretinoin before its all gone and find out if there is anything else in play.
I believe there are many places where you can take a Fibroscan in USA, did you look up the name correctly? :
[Edited link out]
I would highly recommend you do this. Liver panels are useless if the damage is not extensive and then it may be too late.
I see I was reading something from 2012. It looks like it's passed fda approval since then. I'll look into this more when I get a chance.
On 6/2/2017 at 3:19 PM, mariovitali said:I believe there are many places where you can take a Fibroscan in USA, did you look up the name correctly? :
[Edited link out]
I would highly recommend you do this. Liver panels are useless if the damage is not extensive and then it may be too late.
4 hours ago, Colinboko said:This is super interesting!
Whats maybe more interesting is the mayo clinic autoimmune dysautonomiapanel I had. Im not able to see the results online so I called my doctor today to see if anything was abnormal and I kind of got chewed out. She must not have looked at the test before she approved it and the results came back and they were like why did you order this test? (which I have questioned myself a few times, Im mainly just looking for antibodies, or something, anything) She said she has no idea how to interpret the test and would absolutely not give me any result info. she is forwarding it to a nearby university's neurology department and she should be personally getting back to me and I'll either have a appointment at the university or a interpretation.
But I just wonder, negative or normal would be a pretty easy interpretation wouldn't it?
She said absolutely no more call in test, lol. But maybe I made it count, i'll soon find out.
Hello fellow Accutane-users,
This forum does not seem very active at all, but I thought I would add my two cents.I have been off of Accutane for over a year and a half now, and still have some persistent effects. My sides have changed over time, but mainly have been dryness and joint stiffness. These have fluctuated over the past two years (during and after treatment). I don't care much for looking at scientific studies and trying to guess how to solve my issues (too complex and unreliable IMO), rather I would just like to voice my plan of tackling my own issues to restore my body. My new lifestyle of nutrition and supplementation is optimal for restoring the body and is based off of lots of personal research into self healing. In hopes that, anyone like me who happens to be looking over the forum can see this post and use it to help themselves if they are in a similar situation. I have focused on getting better, but never as seriously as starting a few days ago. Anyways, I attached my plan of action for the future, and will post an update once a month.
PLAN OF ACTION
NUTRITION (heavily plant-based diet)
**Avoid high vitamin A foods (sweet potatoes, carrots, dark leafy greens, cantaloupe, mangoes)
**24 hr water fast every Sunday, 3 day water fast at end of each month
**Gallon water/day (MSM- 3000 mg/lemon/chia seeds/ACV/green tea)
Carbs: whole fruits, beans, lentils, quinoa, legumes
Proteins: vegetables, tofu, eggs, salmon, chicken, red meat (1x/week max)
Fats: coconut oil, avocados, almond butter
Juicing fresh vegetables/ some fruit
bone broth soup, bone broth turmeric, greens, other powders
Sauerkraut & fermented vegetables
Probiotic-rich foods (look into doing it yourself)-- kefir
24 hr water fast (every Sunday)
Once comfortable, 72 hour water fast (end of month)
Once comfortable 7-10 day water fast
Ex: breakfast- 2 eggs in coconut oil with vegetable juice // lunch- quinao, black beans, broccoli + avocado // dinner- salmon+ veggie stir fry in avocado oil
SUPPLEMENTS--
Breakfast:
B-12
Raw B-Complex
Salmon Oil- 1000mg
Biotin- 2,500 mcg
BioAstin
Joint Care Gold (gluc,chondroitin, msm, turmeric)
Vitamin E- 400 iu
Calcium- 1500mg
Magnesium- 400mg
Vitamin D3 (+K2)- 5000iu (also get sunlight everyday)
Vitamin C- 1000mg
Between Meals:
Milk Thistle Complex
Dinner:
Vitamin C- 1000mg
Glucosamine (1)
Salmon Oil- 1000mg
Biotin- 2,500 mcg
Vitamin E- 400 iu
Before Bed:
Melatonin- 5mg if needed (sleep 10pm-8am)
Vitamin C- 1000mg
**Obviously I'm not a doctor, so please do your own research and understand that this supplement regime is something I specifically designed for my symptoms.
P.S. Spontaneous Healing by Dr. Andrew Weil is a great read if you have the time!!
[Edited link out]
This is the power that governments and pharmaceuticals have!
They are prepared to hurt soldiers and babies with their vaccines - no one is safe.
Pharmaceutical companies cannot be sued over vaccine damage so no incentive to care. Morally - well we all know they have no morals!
No one cares about the victims - governments, pharmaceutical companies, FDA, MHRA and other agencies just don't care.
The only people who can stop this are the people - stop taking prescribed medications and stop vaccinations!
Does PTSD explain gulf war syndrome?
FChawk discussed PBI and I believe they are all linked.
Remember Dr Mark Gordan - previously discussed. (he also found depleted levels of T)
Work on gut health (pro-biotics, gaps diet or Keto), gluten and dairy free, bariatric chambers. Detoxification. Vit/Mins: Melatonin, B6,B112(shots), fish oils, DMG,zinc, iodine, selenium, magnesium etc - various protocols. Dr Mark Gordon does TRT.
I suggest you look at autism - biomedical protocols.
Chelation, diet, biomedical protocols and HBOT is a starting point.
Also look at PBI as suggested by FChawk.
I know many will say this is not feasible especially the HBOT - but many vitmins are in the same boat.
Parents of vaccine injury(autism) are selling their houses, cars and belongings to try and help their kids - it's just the way it is - no one is going to help so you got to help yourselves.
On 6/3/2017 at 2:10 PM, EuphoricJelly said:Hello fellow Accutane-users,
This forum does not seem very active at all, but I thought I would add my two cents.I have been off of Accutane for over a year and a half now, and still have some persistent effects. My sides have changed over time, but mainly have been dryness and joint stiffness. These have fluctuated over the past two years (during and after treatment). I don't care much for looking at scientific studies and trying to guess how to solve my issues (too complex and unreliable IMO), rather I would just like to voice my plan of tackling my own issues to restore my body. My new lifestyle of nutrition and supplementation is optimal for restoring the body and is based off of lots of personal research into self healing. In hopes that, anyone like me who happens to be looking over the forum can see this post and use it to help themselves if they are in a similar situation. I have focused on getting better, but never as seriously as starting a few days ago. Anyways, I attached my plan of action for the future, and will post an update once a month.
PLAN OF ACTION
NUTRITION (heavily plant-based diet)
**Avoid high vitamin A foods (sweet potatoes, carrots, dark leafy greens, cantaloupe, mangoes)
**24 hr water fast every Sunday, 3 day water fast at end of each month
**Gallon water/day (MSM- 3000 mg/lemon/chia seeds/ACV/green tea)
Carbs: whole fruits, beans, lentils, quinoa, legumes
Proteins: vegetables, tofu, eggs, salmon, chicken, red meat (1x/week max)
Fats: coconut oil, avocados, almond butter
Juicing fresh vegetables/ some fruit
bone broth soup, bone broth turmeric, greens, other powders
Sauerkraut & fermented vegetables
Probiotic-rich foods (look into doing it yourself)-- kefir
24 hr water fast (every Sunday)
Once comfortable, 72 hour water fast (end of month)
Once comfortable 7-10 day water fast
Ex: breakfast- 2 eggs in coconut oil with vegetable juice // lunch- quinao, black beans, broccoli + avocado // dinner- salmon+ veggie stir fry in avocado oil
SUPPLEMENTS--
Breakfast:
B-12
Raw B-Complex
Salmon Oil- 1000mg
Biotin- 2,500 mcg
BioAstin
Joint Care Gold (gluc,chondroitin, msm, turmeric)
Vitamin E- 400 iu
Calcium- 1500mg
Magnesium- 400mg
Vitamin D3 (+K2)- 5000iu (also get sunlight everyday)
Vitamin C- 1000mg
Between Meals:
Milk Thistle Complex
Dinner:
Vitamin C- 1000mg
Glucosamine (1)
Salmon Oil- 1000mg
Biotin- 2,500 mcg
Vitamin E- 400 iu
Before Bed:
Melatonin- 5mg if needed (sleep 10pm-8am)
Vitamin C- 1000mg
**Obviously I'm not a doctor, so please do your own research and understand that this supplement regime is something I specifically designed for my symptoms.
P.S. Spontaneous Healing by Dr. Andrew Weil is a great read if you have the time!!
Great advice and I like the look of this. I would also suggest including Iodine and zinc- please research both.
Hey guys, thought you'd all find this interesting.
At my job I listen to podcasts to pass the time, and one of my go-to podcasts is the Joe Rogan Experience. Earlier this week, he had a doctor on that discussed the harm that anti-depressants, anti-anxiety, and anti-psychotic prescription drugs can cause. I listened to that and had this forum in mind due to the similarities.
Then I listened to the next episode of the show with a comedian as a guest and my jaw nearly hit the floor when the word "accutane" came up.
Here's the YouTube link for you guys:
Talk about accutane starts 9 minutes in
Well folks, this is probably the last chance you may have for years to help get your side-effects recognized. The European Medicines Agency review of RoAccutane is set to happen this week:
https://www.lastingsides.org/accutane/european-medicines-agency-to-review-roaccutane
Much gratitude to those of you who went through the trouble of sending an email.
2 hours ago, Dubya_B said:Well folks, this is probably the last chance you may have for years to help get your side-effects recognized. The European Medicines Agency review of RoAccutane is set to happen this week:
https://www.lastingsides.org/accutane/european-medicines-agency-to-review-roaccutane
Much gratitude to those of you who went through the trouble of sending an email.
Can't find any address to send it to...
On 6/4/2017 at 3:50 PM, TrueJustice said:Very comprehensive list there. Can someone post an email ending in .com.au for Australian victims please!!
It's a European review!
There will be somewhere in Australia where you can report your sides - post it and we will all email them for you.
On 6/3/2017 at 8:21 PM, hatetane said:[Edited link out]
This is the power that governments and pharmaceuticals have!
They are prepared to hurt soldiers and babies with their vaccines - no one is safe.
Pharmaceutical companies cannot be sued over vaccine damage so no incentive to care. Morally - well we all know they have no morals!
No one cares about the victims - governments, pharmaceutical companies, FDA, MHRA and other agencies just don't care.
The only people who can stop this are the people - stop taking prescribed medications and stop vaccinations!Does PTSD explain gulf war syndrome?
FChawk discussed PBI and I believe they are all linked.
Remember Dr Mark Gordan - previously discussed. (he also found depleted levels of T)
Work on gut health (pro-biotics, gaps diet or Keto), gluten and dairy free, bariatric chambers. Detoxification. Vit/Mins: Melatonin, B6,B112(shots), fish oils, DMG,zinc, iodine, selenium, magnesium etc - various protocols. Dr Mark Gordon does TRT.
I suggest you look at autism - biomedical protocols.Chelation, diet, biomedical protocols and HBOT is a starting point.
Also look at PBI as suggested by FChawk.I know many will say this is not feasible especially the HBOT - but many vitmins are in the same boat.
Parents of vaccine injury(autism) are selling their houses, cars and belongings to try and help their kids - it's just the way it is - no one is going to help so you got to help yourselves. Great advice and I like the look of this. I would also suggest including Iodine and zinc- please research both.
I personally am not willing to settle for my side effects to be "recognized". That should be the norm in society, to prevent this from happening to young boys and girls, it should be automatic, we shouldn't have to fight for that. It's borderline malicious to not investigate and address side effects and have others pick up the pieces for them.
I want an apology and incentives from the makers as to why I shouldn't dedicate my life to damaging Roche's interests and stocks.
53 minutes ago, macleod said:I personally am not willing to settle for my side effects to be "recognized". That should be the norm in society, to prevent this from happening to young boys and girls, it should be automatic, we shouldn't have to fight for that. It's borderline malicious to not investigate and address side effects and have others pick up the pieces for them.
I want an apology and incentives from the makers as to why I shouldn't dedicate my life to damaging Roche's interests and stocks.
When I first heard that accutane can cause impotence - I assumed that once I reported it that all hell would break loose and that the use of
accutane would be suspended while an investigation was launched - how ignorant was I.
"they" are happy to kill and destroy babies with vaccines. happy to experiment on soldiers, happy to Maim fetuses - very happy to castrate young men - just as long as they get paid.
Thalidomide victims have waited over 30 years for an apology!
We will never get an apology and the FDA and MHRA will not protect us.
Have you seen the vaccine bus - pro active people doing what they can - god bless them.
We can but try to protect and warn others about the dangers of accutane.
I personally have gotten a few kids not to take this this poison and at least informed others - every little helps.
How many of you can honestly say you completely adhered to a recommended diet and stuck with it for up to 2 years?
I still believe in some level of recovery but I believe it will take more discipline than most of us have.
Okay, an apology? Awesome.
I want my life back. I want my happiness back. I want wayyyyy too much back to be worried about them giving me an apology. I want to feel better.
Sit back and whine all you want but I will never stop researching. If I had known these side effects 8 months ago would I still have taken it? Probably. Because I hated my life with acne... so so much. So therefore I am to blame. I took it, we all fucking took it. Now get tests, try different healing methods.
(Still haven't heard of anyone else trying corticosteroids?)
Cant give up until we've tried to figure this thing out from all angles.
17 hours ago, Colinboko said:Just visited this propecia thread...
time to start experimenting with AI treatments people..
I have heard of autistic kids short term recovery when they are unwell! I better research this.
Am I the only one who thinks it is worth trying autism recovery protocols?
http://www.gethealthyagain.com/autism.html
44 minutes ago, hatetane said:Am I the only one who thinks it is worth trying autism recovery protocols?
http://www.gethealthyagain.com/autism.html
Anything is worth trying at this point. Keep trying until the problems are resolved.
Since having problems with Roaccutane for about a month now I actually complained to a co-worker about my issues and he told me his older brother was one of the original testers for the drug when it come out years ago. He told me Roaccutane is poision and that it ruined his brothers life. Since Roaccutune, my appetite is completely gone, I cannot eat or drink anything without feeling greatly ill. I'm absolutely miserable, I can barely leave the house -- I'm only 18.
anyone had this test? this looks like a good test. it could be a early detector of liver malfunction.
antimitochondrial antibodies(AMA)
Differential characteristics of AMA-M2 autoantibody in primary biliary cirrhosis and non-PBC patients].
https://www.ncbi.nlm.nih.gov/pubmed/26192239
CONCLUSION:
Although detection of serum AMA-M2 is an important feature of PBC diagnostic testing,there is a high ratio of serum AMA-M2 detected in patients with drug-induced liver injury, hepatitis B, C and E, alcoholic liver disease, non-alcoholic fatty liver,and primary hepatic carcinoma. The AMA-M2 positive non-PBC patients still require close observation to watch for future development of PBC.
11 minutes ago, guitarman01 said:anyone had this test? this looks like a good test. it could be a early detector of liver malfunction.
antimitochondrial antibodies(AMA)
Differential characteristics of AMA-M2 autoantibody in primary biliary cirrhosis and non-PBC patients].
https://www.ncbi.nlm.nih.gov/pubmed/26192239
CONCLUSION:
Although detection of serum AMA-M2 is an important feature of PBC diagnostic testing,there is a high ratio of serum AMA-M2 detected in patients with drug-induced liver injury, hepatitis B, C and E, alcoholic liver disease, non-alcoholic fatty liver,and primary hepatic carcinoma. The AMA-M2 positive non-PBC patients still require close observation to watch for future development of PBC.
I haven't I just got two blood tests and a stool sample, as expected everything came back negative. Great...I'm going to make a YouTube video about my HONEST experience on this poison, If I make some sort of recover and can gain the strength to do so I will because this is heartbreaking. The amount of hype I built to go on this drug and never once was I warned of how dangerous it actually is. I have my first scheduled appointment with my dermatologist on the 16th and he is going to get it when I step foot in that building.
Not only did I take accutane but I took it with Sustagen (four teaspoons a day) which also contain Vitamin A among various other vitamins. Is the result of taking Roaccutane essentially Vitamin A overdose?
I'm going to ask my doctor to test me on my vitamin A levels because no doubt I'm hitting it high.