I personally do not believe that Accutane is necessarily at fault for any of the diseases listed above, because these diseases/illnessesare typical of the western population in general, and it is probably impossible to separate out which cases are possibly caused by the drug and which are just the end result of poor diet and lifestyle choices (or genetics.) I don't believe there is any evidence that it shortens telomeres, and if so I'd like to see the studies on that.

I have been on Accutane twice myself, and while my acne came back, I was clear for a while. I did not suffer any long term adverse effects except temporary dry skin.

I used to have IBS (before Accutane, had it for years) and this was completely cured by going on a whole foods plant based diet. In other words a strict vegan diet with no processed foods except tofu and the like. I had a bad case that medication was NOT helping and yet after years of this, going plant based within 3 weeks cured me completely. So if you have problems with that, I cannot recommend this way of eating enough. (Veganism itself did not cure my skin issues, though.)

As far as ED goes, it is almost always caused by cholesterol blockages "down yonder". In fact ED is the first symptom of heart disease. Best cure for that is again going on a plant based, high fiber, zero processed (especially no oils) diet. My partner had issues before going plant based and he is more than great now. I really think you should look up Dr Mcdougall for this. He has very good advice for this problem on Youtube!

I am really sorry that you started having problems after Accutane. Dry skin, eyes and trouble with sebum is indeed a side effect of Accutane but hopefully with time you will see some healing take place.

48 minutes ago, CelestialElf said:

I personally do not believe that Accutane is necessarily at fault for any of the diseases listed above, because these diseases/illnessesare typical of the western population in general, and it is probably impossible to separate out which cases are possibly caused by the drug and which are just the end result of poor diet and lifestyle choices (or genetics.) I don't believe there is any evidence that it shortens telomeres, and if so I'd like to see the studies on that.

I have been on Accutane twice myself, and while my acne came back, I was clear for a while. I did not suffer any long term adverse effects except temporary dry skin.

I used to have IBS (before Accutane, had it for years) and this was completely cured by going on a whole foods plant based diet. In other words a strict vegan diet with no processed foods except tofu and the like. I had a bad case that medication was NOT helping and yet after years of this, going plant based within 3 weeks cured me completely. So if you have problems with that, I cannot recommend this way of eating enough. (Veganism itself did not cure my skin issues, though.)

As far as ED goes, it is almost always caused by cholesterol blockages "down yonder". In fact ED is the first symptom of heart disease. Best cure for that is again going on a plant based, high fiber, zero processed (especially no oils) diet. My partner had issues before going plant based and he is more than great now. I really think you should look up Dr Mcdougall for this. He has very good advice for this problem on Youtube!

I am really sorry that you started having problems after Accutane. Dry skin, eyes and trouble with sebum is indeed a side effect of Accutane but hopefully with time you will see some healing take place.

Seems you got it all figured out. Thanks for your anecdotal and opinionated hypothesis.

1 hour ago, CelestialElf said:

I personally do not believe that Accutane is necessarily at fault for any of the diseases listed above, because these diseases/illnessesare typical of the western population in general, and it is probably impossible to separate out which cases are possibly caused by the drug and which are just the end result of poor diet and lifestyle choices (or genetics.) I don't believe there is any evidence that it shortens telomeres, and if so I'd like to see the studies on that.

I have been on Accutane twice myself, and while my acne came back, I was clear for a while. I did not suffer any long term adverse effects except temporary dry skin.

I used to have IBS (before Accutane, had it for years) and this was completely cured by going on a whole foods plant based diet. In other words a strict vegan diet with no processed foods except tofu and the like. I had a bad case that medication was NOT helping and yet after years of this, going plant based within 3 weeks cured me completely. So if you have problems with that, I cannot recommend this way of eating enough. (Veganism itself did not cure my skin issues, though.)

As far as ED goes, it is almost always caused by cholesterol blockages "down yonder". In fact ED is the first symptom of heart disease. Best cure for that is again going on a plant based, high fiber, zero processed (especially no oils) diet. My partner had issues before going plant based and he is more than great now. I really think you should look up Dr Mcdougall for this. He has very good advice for this problem on Youtube!

I am really sorry that you started having problems after Accutane. Dry skin, eyes and trouble with sebum is indeed a side effect of Accutane but hopefully with time you will see some healing take place.

Can you elaborate on 'no oils'

i have high cholesterol and I agree with eating less meat, less processed foods but I've been told fish oil is good for lowering it??

Also two of the biggest problems Accutane opens us up to is depression and chronic fatigue, trust me it would be soooo much easier if it did give us a disease that could be pinpointed and treated. These other two are just a Pandora's box- where you can spend the rest of your life trying to get out of......

Please, don't elaborate.

5 hours ago, macleod said:

 

Seems you got it all figured out. Thanks for your anecdotal and opinionated hypothesis.

The OP said, and I quote: " But I'm not writing to find out which of these theories, if any, is true. I want to see if anyone can actually give good advice on supplements/diet, or whatever else, to repair damage from this poison. "

"In my opinion" were the first three words of my post, so it's pretty obvious I was sharing anecdotal information? I gave him the best advice I could give, and if you don't like the advice, feel free to skip my post instead of being passive agressive, my pal.

(Furthermore, there is plenty of data that supports my claims on processed oils and on treatment of both IBS and ED), which you are totally free to research in your own free time, if you wish. Although my stories are personal, the healing that occured via specific dietary changes is by no means unique.)

5 hours ago, TrueJustice said:

Can you elaborate on 'no oils'

i have high cholesterol and I agree with eating less meat, less processed foods but I've been told fish oil is good for lowering it??

Also two of the biggest problems Accutane opens us up to is depression and chronic fatigue, trust me it would be soooo much easier if it did give us a disease that could be pinpointed and treated. These other two are just a Pandora's box- where you can spend the rest of your life trying to get out of......

I had high cholesterol and it took a while but it's at a good place right now according to my last visit with my endo. Most people I've heard from have been able to lower theirs with a plant based diet, which excludes processed oils (and believe me, olive and coconut oils are very processed.) If you have the time, check out Nutritionfacts.org, a non-profit site run by Dr Michael Gregor. He basically gathers all the scientific literature on various health and diet subjects and tackles them by category. He does not have an "agenda" and is pretty unbiased. His site has a search function so that you can look up topics that interest you.

https://nutritionfacts.org/video/olive-oil-and-artery-function/

somewhere between pages 400-539, you'll see my posts advocating a plant/fruit based diet. it helps. although, nothing beats fasting. Around day 4-5 is when the truly fascinating science happens throughout the body.

you've been through two treatment cycles of accutane and had a remission of acne. i took accutane for a month and haven't had acne for almost a decade. what does that suggest?

Totally agree with both of you and my doctor who says the same thing - get off the processed meat and eat more veggies.

The problem I have like most of us is we feel no different either way, the only reason I'm making changes is to lower my cholesterol number so I can live longer and enjoy the side effects of tane for years to come....so much joy in it all...

@tanedoutSpot on with TUDCA, although it's not a silver bullet. However this is what is going on (according to the hypothesis).

1. We are born with less than optimal Liver functioning.
2. Our Liver is compensating . meaning that we don't get any symptoms throughout our lives until....
3. A Liver Stressor occurs (EBV, Medication, Prolonged stress due to elevated cortisol) that disrupts Liver function even more
4. The compensation is no longer working as the Liver has taken a hit at step #3 . Several Pathways of Bile acid homeostasis, the LXR Receptor and several other genes that regulate the immune system, Endoplasmic Reticulum Stress control and Apoptosis/Phagocytosis are not working properly.
5. Because of #4 You may see Autoimmunity, Uncontrolled Inflammation, Gut problems (due to impaired enterohepatic circulation of bile acids). Hormones and Neurosteroids are not being metabolised properly and as a result your body cannot use them.

I am still waiting for an answer from Stanford, i will let you know if something comes up.

@mariovitaliI think you theory is definitely along the right lines, it'll be interesting to hear the views of a medical professional on this.

When you were taking choline & TUDCA, prior to that had you experienced any issues with eating fat? I.e. rapid heart rate or pains under your right rib, or was it just the PFS side effects?

I looked into those supplements the guy mentioned on reversing tane YouTube video

I'll try
i eat a lot of fat though healthy and meats
i have avacsdo a day
and coconut yogurt milk
almond butter
fat is essential for skin health

but idk something is def up and wrong

i don't believe diet is cure all
I sometimes wonder if healthy foods are bad for tane ppl
and if we're just screwed

then again I'm negative as fuck
so we will see

few more changes and stuff to try out before I throw my hands in the air
and drink the pain away and get myself a liver transplant

On 9/8/2017 at 11:23 AM, mariovitali said:

On 9/6/2017 at 11:45 AM, guitarman01 said:

So I take it these patients are getting fibroscans ordered by their doctor with no other signs of liver inflammation or injury such as elevated liver enzymes? This seems to be a pretty mild elevation, especially given the person's age. I do believe in the gut-liver-brain axis, but this elevation is very mild,  one kpa point lower and it would be considered close to normal.
Is it mainly gastroenterologists ordering these tests?
How easily are the doctors convinced to run this scan or even justify it, if all other liver function tests are normal?

The patients ask themselves for evaluation and they pay for the test (around $200 in Greece)

So are you saying these people are able to get a fibroscan without a doctors order and just ask for the test directly wherever it is available?

Sounds like the chances of getting this test are slim.

[Edited link out]
 

KJM1987 9 months ago Member486 posts

No doctor I can find will put me in for a fibroscan. None, they say my liver is fine. I have my reasons to doubt them. I was an Army Officers, we are trained to get an answer and be resilient. That is what I am doing Does anybody know a private clinic that is reputable in the U.S that will do a fibroscan without a doctor's order. I know there is one in LA, but closer would be better. Hey, if LA is where I have to go then so be it... If you can't advertise names of clinics or locations, please PM me. Or maybe I should just call my congressman, who knows. Already looked up flights trying to go to NY, have family near by. Support is always good. With my labs, I will need it lol.

I tried 5 places. 2 told me they only do it for hep c. One never called back. 2 said you need a doctor's order. I am in Alabama near Fort Benning.
Thanks moon, called them all. They all want referrals.

So many places require referrals.
Has anyone tried being treated overseas? Mexico or China? I feel we should be saving up for vacation trips. And those places have great medical and cheap room/boardingoptions.

On 9/9/2017 at 11:59 PM, guitarman01 said:

So are you saying these people are able to get a fibroscan without a doctors order and just ask for the test directly wherever it is available?

Sounds like the chances of getting this test are slim.

[Edited link out]
 

Done with games. Fibroscan without doctor's order in the U.S clinic.

KJM1987 9 months ago Member486 posts

No doctor I can find will put me in for a fibroscan. None, they say my liver is fine. I have my reasons to doubt them. I was an Army Officers, we are trained to get an answer and be resilient. That is what I am doing Does anybody know a private clinic that is reputable in the U.S that will do a fibroscan without a doctor's order. I know there is one in LA, but closer would be better. Hey, if LA is where I have to go then so be it... If you can't advertise names of clinics or locations, please PM me. Or maybe I should just call my congressman, who knows. Already looked up flights trying to go to NY, have family near by. Support is always good. With my labs, I will need it lol.

I tried 5 places. 2 told me they only do it for hep c. One never called back. 2 said you need a doctor's order. I am in Alabama near Fort Benning.
Thanks moon, called them all. They all want referrals.

@guitarman01 didn't you have a Mayo Clinic appointment..? Any update on that?

16 hours ago, macleod said:

somewhere between pages 400-539, you'll see my posts advocating a plant/fruit based diet. it helps. although, nothing beats fasting. Around day 4-5 is when the truly fascinating science happens throughout the body.

you've been through two treatment cycles of accutane and had a remission of acne. i took accutane for a month and haven't had acne for almost a decade. what does that suggest?

please tell me how your fasting method works - please

1 hour ago, Skipflip12 said:

please tell me how your fasting method works - please

Well, I've only done it twice. I just don't eat for 4-5 days. At all. And only limit myself to sips of water once or twice a day. You can't really go out and be active, you kind of have to stay at home. On day 3 if you are sitting down for a bit and try to stand up too fast, you'll be a little light headed, but it'll be fine assuming you are young and no pre-existing insulin issues. On day 4, your shoulders and knees begin to throb (feels good) as your body makes a last ditch effort to survive, begins to scavenge everything including free radicals and so much more. 

It's not difficult, and you get blasts of dopamine randomly throughout the 4 days, so it's not entirely miserable..

14 hours ago, tanedout said:

@mariovitaliI think you theory is definitely along the right lines, it'll be interesting to hear the views of a medical professional on this.

When you were taking choline & TUDCA, prior to that had you experienced any issues with eating fat? I.e. rapid heart rate or pains under your right rib, or was it just the PFS side effects?

Maybe I need to revisit Tudca - I just checked the old bottle in fridge and it's only 85 mg, I'm looking at other brands on internet that say 250 mg, maybe after 20 years my liver is screaming for a good dose of Tudca or maybe I'm fucked and it's beyond repair.......maybe I didn't do enough liver and gallbladder cleanses - ahh the confusion.....

On 9/9/2017 at 4:04 AM, CelestialElf said:

I don't believe there is any evidence that it shortens telomeres, and if so I'd like to see the studies on that.

Ask and you shall receive. (Err, doubt and you shall receive. See Cunningham's Law.)

If you ask me, all of this evidence leads to the conclusion that that Accutanepharmacologically behaves like any other chemotherapy drug: It exerts pro-aging effects through a number of pathways, one of which is telomerase downregulation. Therefore, it should come as no surprise that vitamin A supplementation is associated with increased death and worse quality of life, just as exposure to more common (marketed) chemo drugs is associated with an astonishing increased rate of chronic disease and mortality. Again, this relates back to the pro-aging effects of these drugs, which extend to the cells, hormones, and beyond. So sure, case-by-case we may never know coincidence from causation, but as a trend, Accutane is doing something sinister to peoples' health.

That being said, I have been managing long-term side effects quite well lately by taking loads of antioxidants, as well as Sarcosine.

Actually ACCUiTy - unfortunately it does come as a surprise because what you've just said is neither stated on packaging, in any guide or mentioned by the doctors prescribing Accutane!!

I guess we all just learnt the hard way about prematurely aging.

These days we have anti aging clinics don't we that inject all number of things including stem cells if I'm not mistaken?

@guitarman01Correct, you go to a private clinic which has a Fibroscan device and you just pay to get the test. There is also a club of people having Liver disease/ hepatitis C that owns a Fibroscan device and they travel around Greece performing Fibroscans totally free. I saw a test performed by their doctor and its the best i have seen in terms of quality. Unfortunately i am not in Greece right now as i am working abroad.

@tanedoutThe only side effect from TUDCA that i experienced (and actually others too) was diminished appetite. TUDCA can be a great way to kick-start things and support Liver to overcome the vicious circle it's in but ultimately you have other things that need to be taken care of. If i recall correctly, i was on TUDCA for around 7 months, 750 mg per day

By far one of the most common problems i found in DNA Data is the LXR Receptor, that's NR1H3.

There are a couple of ways to try to upregulate LXR : The first one is Jiaogulan (which i will be trying in a few days) and also Bee Propolis that up-regulates PPARs *and* LXR.

I already started Propolis last night and i will report as i need some days to confirm that something is working or not.

Basically, i am trying to get to the bottom of this and take as few supplements as possible and at the same time being symptom-free.

1 hour ago, TrueJustice said:

Actually ACCUiTy - unfortunately it does come as a surprise because what you've just said is neither stated on packaging, in any guide or mentioned by the doctors prescribing Accutane!!

Right! Point being, given Accutane's well-documented pharmacological profile, it's odd that medical professionals are so dismissive of its enduring side effects. We see the same type of persistent/long-term side effects with other chemo drugs. Accutane is not a special snowflake chemo drug; it has a comparable potential for harm. The only difference is that former users of other chemo agents have patient follow-up studies. And perhaps that's what we need (as former Accutane users) to be taken more seriously by the general public and medical community.

And yeah, stem cell therapy is an emerging area of science. I know it's used for physical injuries already. It will be am exciting day when it is regularly employed for psychiatric/neurological problems.

14 hours ago, mariovitali said:

@guitarman01Correct, you go to a private clinic which has a Fibroscan device and you just pay to get the test. There is also a club of people having Liver disease/ hepatitis C that owns a Fibroscan device and they travel around Greece performing Fibroscans totally free. I saw a test performed by their doctor and its the best i have seen in terms of quality. Unfortunately i am not in Greece right now as i am working abroad.

@tanedoutThe only side effect from TUDCA that i experienced (and actually others too) was diminished appetite. TUDCA can be a great way to kick-start things and support Liver to overcome the vicious circle it's in but ultimately you have other things that need to be taken care of. If i recall correctly, i was on TUDCA for around 7 months, 750 mg per day

By far one of the most common problems i found in DNA Data is the LXR Receptor, that's NR1H3.

There are a couple of ways to try to upregulate LXR : The first one is Jiaogulan (which i will be trying in a few days) and also Bee Propolis that up-regulates PPARs *and* LXR.

I already started Propolis last night and i will report as i need some days to confirm that something is working or not.

Basically, i am trying to get to the bottom of this and take as few supplements as possible and at the same time being symptom-free.

Are you that naive to believe in a magic Virus that eats your liver common man allopathic medicine has lied to us for over 200 years.

From vaccines to chemo it's all poison. Again I tell you read the book Virus Mania. And wake the "&$" up.

There are a lot of reasons for liver problems , no magic virus needed.

No more fake news . com

I believe it's liver thyroid issues for us

too much a messed up both
and we could be deficient in d as well
and I'm sure that added with stress were under causes issues

it said too much a can mess up mitochondria
and look up those symptoms
also says acrocyanosis which I believe I have not raynaurds
my hands feet don't sting or tingle and not tips
its the whole hands and feet cold and blue white and knees

In some cases
liver transplant needed and can help
with toxicity

we we either need to avoid a for aehile
and do the ox bike and liver test and scans biopsy

or eat more a and see if we need more since tane

I think we all deserve respect for our unneeded suffering over the years. For no GOD damn reason as I have often said most of us had mild acne.

50 minutes ago, Nemesisbrady said:

I believe it's liver thyroid issues for us

too much a messed up both
and we could be deficient in d as well
and I'm sure that added with stress were under causes issues

it said too much a can mess up mitochondria
and look up those symptoms
also says acrocyanosis which I believe I have not raynaurds
my hands feet don't sting or tingle and not tips
its the whole hands and feet cold and blue white and knees

In some cases
liver transplant needed and can help
with toxicity

we we either need to avoid a for aehile
and do the ox bike and liver test and scans biopsy

or eat more a and see if we need more since tane

You have no concern with telomere shortening??

That angle doesn't add up for you?

Too any of us feeling prematurely aged with more problems than just liver which leads me to believe liver isn't the source of problems, it's more cellular and wide spread.

Thats not to say don't work on your liver but just don't think that's the end of it all!!

I mean I'm concerned but idk how we can prove that
and I really don't want to look into it and strsss more
coming from someone who has fear of aging prematurely
I def feel old least 60 inside and barely 29
drybess wise fatigue no energy
and eye bags and dead dull lines in face

I don't believe liver is the main source
i know with me it's the only thing that flagged on second course....
yesrs later thyroid Ana
and now igg and hormones

so def can be more
its hard to tell...
do we really believe we will be cured? When it's been decades for some...
we all have diff symptoms
some of us seem to all have dryness and flushing in common
but that could be because it destroyed oil glands

i know in my case smooth beam v beam and two courses of accutane
killed my oil perm

i just want to feel happy and hydrated and look decent sleep good again....

sadly cant get answers and every time I mention accutane it's like a cult and it's like oh no that's not accutane
it's mental lol
its scary as fuck

one of you psych at the time told my mom
its the accutane but u I'll never get me to testify in court

also said it's from India never take something from there

I hope someone finds a cure or answer
and one of us if not most would be great if all
could feel better

paet of me feels like it's beating a dead horse

all I know is I can't keep sitting isolated waiting on docs to find it
or testing our diets and supplements no relief
and waiting on an accutane cure