6 hours ago, oli girl said:

17 hours ago, tryingtohelp2014 said:

http://lifespa.com/the-science-of-tongue-scraping-with-copper/

add it to the list of symptoms

just got retested and added a Vitamin D test... the vitamin D test just came back  super low.

 

ee

Doesn't surprise me your deficient in Vit D.... Accutane Victims are! I posted way back on this thread the relationship between Vitamin A and Vitamin D. If your going to supplement make sure it's in liquid form

A PM i got from another user:

Yes. At the end of the day, I can't be sure if it was actually Accutane that caused these problems, but I'm sure it at least exacerbated them. What helped me get better was getting enough sleep, and eating enough calories.Without realizing it I was eating very few calories, and most of them simple carbs (fruit, white rice). I've been on a "paleo"-like diet for a couple years now, and I think it's fantastic.

And very importantly, I corrected my deficiency in vitamin D. I also realized that it's important to take vitamin D with vitamin K, and magnesium. I'll let you look into that if you want. I also take kelp for the iodine, since I don't use table salt (which is fortified with iodine because so many people would otherwise be deficient), and I take selenium as a cofactor. All of these have an immediate impact on how I feel (good), except probably vitamin K, which is fine. Can't always feel something's working.

Vitamin D restored my energy. Magnesium helps with my anxiety, and reduces the side effects of vitamin D (very important) like sore joints, weakness, tense muscles, dry skin, and fatigue. And iodine (from kelp) and selenium are amazing for energy.

Come to think of it, it's very likely that my problems stemmed from lack of vitamin D, and were just worsened by Accutane. On top of that, initially vitamin D helped but then I suffered its side effects because I was probably so deficient in magnesium. I was taking 4000-8000 IUs of vitamin D and wondering why my symptoms were getting worse. It's vitamin D NEEDS magnesium to work properly, and supplementing with vitamin D when you don't have enough magnesium is dangerous. I think magnesium deficiency is likely an epidemic, but it's so hard to diagnose since blood samples are useless.

I think your post is spot on ketogenic. It goes along with what I have been feeling all along. That accutane was not able to distinguish between exocrine and endocrine glands. It has affected the hypothalamus and pituitary as well as adrenal and testes in some people. I think gut health also plays a part, of course, but I think salivary glands were affected in that regard. Plain and simple, we need to put oil back in our system, we need hydration for homeostasis, we need to stimulate glands to function again. That's what I think anyway.

After a little over month of 2mg a day of copper,  i barely pushed my levels into the low normal range for copper and ceruloplasmin.   The plan is to keep taking this for another two months, and get retested.

Will also add Magnesium, Vitamin D(small, mostly get more sun)  and Iodine(kelp)  in the pm.  

I will take this for a month and get retested for Mag and Vitamin D.

Since the copper, my joints have been feeling good enough to goto the Gym sometimes twice a day.  I also have way more energy...im breathing easier.    Everybody really should get tested for whatever you think might be affecting you and post!!!!  instead of pure guesswork

On 3/21/2016 at 10:56 PM, octopusfrog said:

I would highly suggest that everyone on this thread reach out to Dr.Bremner and ask for his support- his research discovered the dangers of this drug some time ago. He could honestly be the kind of person we need to really get some traction here. At the very least point us in the right direction...

Here's his contact info:
http://www.psychiatry.emory.edu/research/laboratories/bremner/index.html
J. Douglas Bremner, MD
jdbremn@emory.edu
404.712.9569

And here's his video regarding accutane

I reached out to Dr. Bremner - Here is what he had to say:

Sorry to hear about how this medication has affected your health. It is only available in generic forms but unfortunately suicides are still occurring with the generics.

We are not doing any research studies on this topic now. If people need legal help they should have their attorneys contact me directly. No case has been won to date however and the majority were dismissed by judges who said the warning on the label was adequate (something I do not agree with). With the ipledge program doctors are now not allowed to prescribe unless they specifically counsel on side effects

J. Douglas Bremner, M.D.

Professor of Psychiatry and Radiology

Director, Emory Clinical Neuroscience Research Unit (ECNRU)

Emory University School of Medicine

Atlanta VA Medical Center

(404) 712-9569

@emory.edu" rel="external nofollow">jdbremn@emory.edu

http://www.psychiatry.emory.edu/research/laboratories/bremner/index.html

http://www.dougbremner.com

email:@emory.edu" rel="external nofollow">doug.bremner@emory.edu

Address:

12 Executive Park Dr NE

Rm 382

Atlanta, GA 30329

Vitamin D affects intestinal bacteria and the production of B vitamins:

The B vitamins are just as important for normal sleep and should be given with vitamin D:

Vitamin D is not a vitamin:

Sad/Glad to se yall still here. Have anyone went to the dentist and had a thorough checkup some years after accutane? Be aware of dry mouth!, it was one sideffect that was the least of my worries. But now, i suddenly had 20 cavities spread evenly around my mouth. Since accutane i have persued an as healthy lifestyle as possible so i was shcoked and had to recheck it With another dentist, who sadly confirmed.
I do not drink soda,i very rarely eat anny candy.My teeth are in an totally unnatural state of Health for my age and lifestyle. I did brake atooth right after accutane , i believe the drug also did something With my bone/tooth structure. Until then i had been the one always chewing the hard unpopped popcorns, trying to open beer bottles With my mouth etc.
At my dentist appointment in 2012 my mouth looked ok otherwise though, just the one broke tooth, now suddenly its really bad. I will be bringing a bigwater bottle for my still sleepless Nights from now. Headsup!

7 hours ago, dthtodrmtlgsts said:

Sad/Glad to se yall still here. Have anyone went to the dentist and had a thorough checkup some years after accutane? Be aware of dry mouth!, it was one sideffect that was the least of my worries. But now, i suddenly had 20 cavities spread evenly around my mouth. Since accutane i have persued an as healthy lifestyle as possible so i was shcoked and had to recheck it With another dentist, who sadly confirmed.
I do not drink soda,i very rarely eat anny candy.My teeth are in an totally unnatural state of Health for my age and lifestyle. I did brake atooth right after accutane , i believe the drug also did something With my bone/tooth structure. Until then i had been the one always chewing the hard unpopped popcorns, trying to open beer bottles With my mouth etc.
At my dentist appointment in 2012 my mouth looked ok otherwise though, just the one broke tooth, now suddenly its really bad. I will be bringing a bigwater bottle for my still sleepless Nights from now. Headsup!

Has anyone gone to the dentist?

I go every 6 months for a clean & check up. I've had some problems too with cavities - only 2 or 3 but it did occur to me that with all my clicking joints and brittle hair etc that the same would be with my teeth.

I so wish I could get some oil back in to body - I got really excited about Baxyl but it just didn't do anything noticeable for me!?

There are products for dry mouth but I've not gone to the trouble of getting any, I am very vigilant though I'm cleaning my teeth and doing al I can to prevent cavities!!

Vitamin c definitely stimulates saliva and might also help with dry eyes. I've noticed this when taking a benadryl when I was taking vitamin c, I didn't even get any sort of dry mouth that I'm used too.

Has anyone got a CT scan of their abdomen to look at the Liver, pancreas and gallbladder? Normal, abnormal results? Debating if I'm going to spend the money to get this done.

Hey guys, just checking back in.

So it's been more than half a decade now since I've followed this thread, and I am happy to see we are actually progressing in terms of finding out a cure.

Back in the day most of the regulars on this thread were generally close-minded to the idea of healthy eating being a possible cure. Most of the thread used to be overrun by recommendations of using other drugs, or superdosing on vitamins/supplements as an attempt to reverse the damage done by Accutane. I think the great thing about putting diet as our main means to our road to recovery is...

1.) All the vitamins/nutrients in supplements can be found in whole foods, and at the right doses at well
2.) By not focusing on drugs and supplementation, we are more able to trust one another's advice over the internet that no one is trying to "sell" anything from a company

Update about myself...
Been eating healthy, and I also stopped eating dairy and beef. However, I'm checking back in because I've noticed my hair is still continually thinning. Also, I've been getting comments that I've aged quite a bit, to which I agree. I'm sure this isn't due to me naturally aging, as I am only 22, and my general appearance just seems unhealthy despite my healthy lifestyle. I'm not giving up though, as I know the road to recovery will be long, and it is too quick to assume that the damage done is irreversible.

Anyways, I noticed many of you are talking about parasites. This is something new that I never heard of on this thread back in the day. How are parasite related to Accutane damage? Also, can some of you share what has worked for you in general overall health, and more specifically for thinning hair? Mr Ketogenic mentioned candida overgrowth and cutting out sugar. I've tried that and it is more difficult than it seems... Any tips?

Let's all contribute. Good luck y'all, and I'll be back

supplement, vitamin, clean diet, healty life....these things fix only momentaneus 10% of sides, lucky people fix 20-30%, no normal life after seriuos accutane damage

its horrible but this discussion is useless

my question, why post finasteride syndrome is accepted in the medical world and accutane that destroy sex life no, no one doctor take serious

i lost all sensation in genitals, is like dead but doctor diagnosis is sexual performance anxiety, mental disturb, dysmorphobia...

15 hours ago, TrueJustice said:

Has anyone gone to the dentist?

I go every 6 months for a clean & check up. I've had some problems too with cavities - only 2 or 3 but it did occur to me that with all my clicking joints and brittle hair etc that the same would be with my teeth.

I so wish I could get some oil back in to body - I got really excited about Baxyl but it just didn't do anything noticeable for me!?

There are products for dry mouth but I've not gone to the trouble of getting any, I am very vigilant though I'm cleaning my teeth and doing al I can to prevent cavities!!

True. Dry mouth is the very last thing we worry about, but it needs looking at. I've read horror stories about jaw bone loss, periodontitis, tooth decay on MedsChat. Lack of saliva means that not only we can't pre-digest food, but also dental enamel becomes demineralised and porous, bacteria spreads like mad producing acid and causing cavities.

Also, the gum recession. Does everyone suffer from that after accutane? Would grafting the gums be a permanent solution or would they start to recede from dry mouth after a while again?

Look up sjogren's syndrome dry mouth relief/treatment. It was one of my first symptoms after accutane and a real concern before the more serious problems came. Now I brush my teeth 4 times a day, drink water/ herbal tea all day, rinse my mouth with salt,bicarb of soda, xylitoland what notsolutions, massage my salivary glands (no kidding), chew xylitol gum and use dry mouth tooth paste like Biotene.

On 4/15/2016 at 8:39 PM, HaniaD said:

 

True. Dry mouth is the very last thing we worry about, but it needs looking at. I've read horror stories about jaw bone lose, periodontitis, tooth decay on MedsChat. Lack of saliva means that not only we can't pre-digest food, but also dental enamel becomes demineralised and porous, bacteria spreads like mad producing acid and causing cavities.

Also, the gum recession. Does everyone suffer from that after accutane? Would grafting the gums be permanent or would they start to recede from dry mouth after a while again? Does anyone know?

Look up sjogren's syndrome dry mouth relief/treatment. It was one of my first symptoms after accutane and a real concern before the more serious problems came. Now I brush my teeth 4 times a day, drink water/ herbal tea all day, rinse my mouth with salt,bicarb of soda, xylitoland what notsolutions, evenmassage my salivary glands (no kidding), chew xylitol gum and use dry mouth tooth paste like Biotene.

 

I noticed that early on when I would thread it would scar if the thread was pressed too hard. If you can tell the person threading you to go easy its best!! If you have the scars now MAKE SURE YOU DON'T TOUCH THEM. When you first finish accutane the skin is very vulnerable and if you pick it at all now it won't go away for a long time. However most of my scars now are fading and if you are sure to leave them alone or apply lots of lotion daily then they will go away! Threading scars are no problem when it comes to dissapearing. I was on accutane two years ago and here is my accutane journey.
[Edited link out]

1 hour ago, Ruvik said:

why post finasteride syndrome is accepted in the medical world and accutane that destroy sex life no, no one doctor take serious

Well it hasn't been like that for long, so maybe it will change with Accutane as well someday.

1 hour ago, HaniaD said:

Also, the gum recession. Does everyone suffer from that after accutane?

My gums have recessed and my enamel is fucked. Too hard brushing definetly has a role in my case, but it think Accutane made my teeth more vulnerable in the first place.

On 4/15/2016 at 9:03 PM, Barbie Shanila said:

I noticed that early on when I would thread it would scar if the thread was pressed too hard. If you can tell the person threading you to go easy its best!! If you have the scars now MAKE SURE YOU DON'T TOUCH THEM. When you first finish accutane the skin is very vulnerable and if you pick it at all now it won't go away for a long time. However most of my scars now are fading and if you are sure to leave them alone or apply lots of lotion daily then they will go away! Threading scars are no problem when it comes to dissapearing. I was on accutane two years ago and here is my accutane journey.
[Edited link out]

Feast your eyes on an actual bot pushing accutane. And on this thread too, out of all them. Wow, incredible. Roche pharmaceuticals ladies and gents. Cutting edge.

21 hours ago, TrueJustice said:

Has anyone gone to the dentist?

I go every 6 months for a clean & check up. I've had some problems too with cavities - only 2 or 3 but it did occur to me that with all my clicking joints and brittle hair etc that the same would be with my teeth.

I so wish I could get some oil back in to body - I got really excited about Baxyl but it just didn't do anything noticeable for me!?

There are products for dry mouth but I've not gone to the trouble of getting any, I am very vigilant though I'm cleaning my teeth and doing al I can to prevent cavities!!

a msg i came across.....

penny17frances02122over a year ago

Welcome to the party although sadly we have lost a few members over the years.

11 hours ago, Ruvik said:

supplement, vitamin, clean diet, healty life....these things fix only momentaneus 10% of sides, lucky people fix 20-30%, no normal life after seriuos accutane damage

its horrible but this discussion is useless

my question, why post finasteride syndrome is accepted in the medical world and accutane that destroy sex life no, no one doctor take serious

i lost all sensation in genitals, is like dead but doctor diagnosis is sexual performance anxiety, mental disturb, dysmorphobia...

I always ask what was your dosage ?

Let's be careful not to turn this into a pity party. It's always easier to give up and talk about how we ruined our lives. But for myself and many others, I'm still challenging myself to look for new ways to fix this. It's not going to be a one week or one month recovery. Anyways, have anyone else here ever had successes with fermented foods (kefir and kombucha specifically)? What were your experiences with it and how did you prepare it? Also, why are we just ignoring that guy's awesome testimonial?

It's not a pity party it's reality , we lost some members due to a chemo drug and I'm sad about that , no one should die over pimples and so tonight I salute all of the veterans on this board make the most your life and your accutainted body's one thing I know for sure is we only get 1 life so live it.

And so so tonight i'mdrinking some beer and I will raise a glass to our lost comrades they will not be forgotten. Thanks to our work on this forum the word is out and less suffering is the end result.

^ I was thinking, perhaps some things may be discovered after autopsy, such as perforations in the liver and hippocampal areas in the brain. Everyone should complete a full medical report about everything that has occurred to them and also give permission for a post mortem autopsy to be preformed. It could contain clues into the aggressive nature of accutane and perhaps the smoking gun where Roche will have to acknowledge the suicides and end up paying all the families.

$cience will get NOTHING out of me , it's completely BANKRUPT and driven by $$$$ , remember nature is the great healer , in reality a whole generation of young people havebeen poisoned for profit over a skin condition caused by western living and developed world drugs / vaccines.

As as I often say the systematic poisoning from cradle to grave = Allopathic Inc.
That is reality. Take a look in third world countries do you see people with skin problems NO , the Kitavan tribe would be a good example, lies lies and more @$)(ing lies .

You can start with the fraudulent germ theory and move on from there . Or read the book virus mania or the poisoned needle to get a taste of how utterly corrupt Allopathic inc is.

Yea, but a post mortem autopsy could be the difference between finding a cause...and making Roche reap what they sow. You have to give science a chance to correct its wrongs. And it has to be in writing that it is in your will that you will allow for one to happen. I think they just put the organs back inside when they are done, and taken samples, so why not? It's not like you are donating anything.

6 hours ago, Gladiatoro said:

17 hours ago, Ruvik said:

supplement, vitamin, clean diet, healty life....these things fix only momentaneus 10% of sides, lucky people fix 20-30%, no normal life after seriuos accutane damage

its horrible but this discussion is useless

my question, why post finasteride syndrome is accepted in the medical world and accutane that destroy sex life no, no one doctor take serious

i lost all sensation in genitals, is like dead but doctor diagnosis is sexual performance anxiety, mental disturb, dysmorphobia...

I always ask what was your dosage ?

2005 - 20mg daily 6 months
2008 - 20mg daily 6 months

sides effect appears during second course but disappear after stopping drugs

2012 - 10mg daily 6 months, the schedule is taking drugs for 8 months but i stopped for severe ed

New bad news

Today I was visited for my severe sexual sides from accutaneby a urologist-andrologist in northern Italy, he says he sees penile fibrosis.I doubt this can explain accutane effectsany of you have similardiagnosis?

He prescribed me 2 exams, unfortunately, the months of waiting are so many, I will not have them made before summer

have you guys looked into mast cells possibly causing inflammation? what we are dealing with seems like hypersensitivities sometimes. mast cells are everywhere. the nerves, skin, hair, gut, brain,liver. if there is something bothering the eyes due to inflammation it can cause severe dry eyes if left untreated. also i read a study that low grade brain inflammation can occur from a hypersensitive immune response what ever that may be that if also left untreated and allowed to persist for long periods of time can actually be damaging to the brain and trigger major depression.
facial flushing, hair loss that alot of people get, this could be a inflammatory response.
I think our gut is producing too much stomach acid, not too little. those people that say they have a metallic taste in their mouth or white coating on the back of their tongue (made worse by some probiotics that can actually increase acid production) this is probably acid reflux. those that have hypersensitive responses that mast cells may be involved in, are more prone to produce too much stomach acid. there is also the vagus nerve that may come into play based on lpr studies i read that could trigger all sorts of weird responses and could trigger the production of excess mucus.
im not saying im recommending this but has anyone tried ppis like nexium and noticed it almost feels like an antidepressant and helps with anxiety? even reduced libido?(I have) ppis like nexium act as an anti-inflammatory in the gut. this is just one facet of treatment maybe for a immune system thats out of wack triggering pro inflammatory responses.
ive been diagnosed witheosinophilic esophagitis and allergies. So this is what im going to treat and focus on atm.

Involvement of mast cells in eosinophilic esophagitis.

CONCLUSION:

Herein we have identified local mastocytosis and mast cell degranulation in the esophagi of patients with EE

http://www.ncbi.nlm.nih.gov/pubmed/20538331