On 3/14/2018 at 7:47 AM, guitarman01 said:

I would go right back to walkinlab and order the am cortisol test then.
You are now in the unfortunate game that many have played for years.
Including myself.
Everyone thinks they know what it is, until its not. (I do still believe in the possibility of some "it" factors that have a trickle down effect.)
There is some evidence though, you can also look at @Babisposts, one of his diagnosis involved the pituitary.

The effect of different doses of isotretinoin on pituitary hormones.

https://www.ncbi.nlm.nih.gov/pubmed/25721216
but again this is just a different hormone, same scenario like I just posted.
You'll find ranges all over the board post accutane.

 

 

Official Accutane Thread

 

 

Put it this way Stuart, I took a very low dose of only 10mg per day for 30 days and almost 5 years later am still suffering from persistent sides....

[Edited link out]
Clayton, did you test your estrogen as well?
My results show an elevated cortisol level (yours is almost at maximum also), and a high estrogen.
Do you suffer from hair loss?
Very surprised to see high DHT, as my understanding is this would be very low?

@flynn@Dubya_BThere is this as well.

Vitamin A Increases DHT By Enhancing 5-alpha Reductase

http://www.ncbi.nlm.nih.gov/pubmed/10423178
Administration of all-trans-retinoic acid (ATRA; 60 mg/kg daily for 3 days) to male rats increased the rate of 5alpha-dihydrotestosterone (5alpha-DHT) formation from testosterone in microsomal fractions in vitro. The formation of androstane-3alpha,17beta-diol from testosterone was also increased because of the higher concentration of 5alpha-DHT produced in microsomal incubations.

it was found that administration of ATRA to gonadectomized male rats produced complete feminization of the enzyme.

What is the main androgen produced by the testes? Testosterone.
These findings suggest that ATRA is a novel positive regulator of the 5alpha-reductasethat in combination with the removal of circulating androgen, which normally suppresses 5alpha-reductase levels, feminizes the expression of this enzyme in rat liver

 

 

Urban Dictionary: mindfuck

 

 

[Edited link out'

an idea or concept that shakes one's previously held beliefs or assumptions about the nature of reality.

Deleted

On 3/14/2018 at 7:47 AM, guitarman01 said:

@flynn@Dubya_BThere is this as well.

Vitamin A Increases DHT By Enhancing 5-alpha Reductase

http://www.ncbi.nlm.nih.gov/pubmed/10423178
Administration of all-trans-retinoic acid (ATRA; 60 mg/kg daily for 3 days) to male rats increased the rate of 5alpha-dihydrotestosterone (5alpha-DHT) formation from testosterone in microsomal fractions in vitro. The formation of androstane-3alpha,17beta-diol from testosterone was also increased because of the higher concentration of 5alpha-DHT produced in microsomal incubations.

it was found that administration of ATRA to gonadectomized male rats produced complete feminization of the enzyme.

What is the main androgen produced by the testes? Testosterone.
These findings suggest that ATRA is a novel positive regulator of the 5alpha-reductasethat in combination with the removal of circulating androgen, which normally suppresses 5alpha-reductase levels, feminizes the expression of this enzyme in rat liver

 

 

Urban Dictionary: mindfuck

 

 

[Edited link out]

an idea or concept that shakes one's previously held beliefs or assumptions about the nature of reality.

Thanks for posting this! This is a super interesting study but its not that surprising to me. I'm not surprised metabolites of accutane increase 5AR activity, they also increase the activity/expression of other enzymes involved in steroid biosynthesis. Whats fascinating is, I'll bet you this is one of the reasons why acne tends to flare up whilst on accutane, because at first there is increased 5AR activity in the skin which stimulates sebum production. However this doesn't change the validity of the 5AR theory.

The theory states that accutane downregulates the expression of the 5AR enzyme (specifically in the brain), which it has been proven to do in the skin after just 12 weeks of treatment. Thus even if at first some aspects of accutane increase 5AR activity (may also explain why some people feel more sexual for periods on Accutane, a girl told me she is currently hypersexual whilst on accutane), eventually its the downregulation of the enzyme which causes the damage in some susceptible people. Another key thing to note, neurons are some of the only cells in the body which don't divide. As such changes to gene expression in peripheral cells may changes over time as these cells are constantly dividing being replaced. But changes in gene expression in the neurons are likely to persist far longer or maybe forever (as seems to be the case with PAS).

For fatigue have you ever tried RU-486. That might actually help re-sensitive your cortisol receptors. I don't know enough about fatigue to give any advice here.

2 hours ago, flynn said:

Thanks for posting this! This is a super interesting study but its not that surprising to me. I'm not surprised metabolites of accutane increase 5AR activity, they also increase the activity/expression of other enzymes involved in steroid biosynthesis. Whats fascinating is, I'll bet you this is one of the reasons why acne tends to flare up whilst on accutane, because at first there is increased 5AR activity in the skin which stimulates sebum production. However this doesn't change the validity of the 5AR theory.

The theory states that accutane downregulates the expression of the 5AR enzyme (specifically in the brain), which it has been proven to do in the skin after just 12 weeks of treatment. Thus even if at first some aspects of accutane increase 5AR activity (may also explain why some people feel more sexual for periods on Accutane, a girl told me she is currently hypersexual whilst on accutane), eventually its the downregulation of the enzyme which causes the damage in some susceptible people. Another key thing to note, neurons are some of the only cells in the body which don't divide. As such changes to gene expression in peripheral cells may changes over time as these cells are constantly dividing being replaced. But changes in gene expression in the neurons are likely to persist far longer or maybe forever (as seems to be the case with PAS).

For fatigue have you ever tried RU-486. That might actually help re-sensitive your cortisol receptors. I don't know enough about fatigue to give any advice here.

I was on the drug for literally 4 weeks...

RU-486drug - who seriously would entertain taking this abortion drug??

If youve taken it, pls share experience, Im curious.

Im seeing nothing on internet that its used forenergy, Im only seeing that its used for aborting life. Id be physically sick ingesting something like that.

13 hours ago, TrueJustice said:

RU-486drug - who seriously would entertain taking this abortion drug??

If youve taken it, pls share experience, Im curious.

Im seeing nothing on internet that its used forenergy, Im only seeing that its used for aborting life. Id be physically sick ingesting something like that.

Agree.

21 hours ago, guitarman01 said:

Worst case scenario. The progression.
Blood flow. Nerve Damage. Muscle Damage.
Ischemic optic neuropathy is damage of the optic nerve caused by a blockage of its blood supply.
The scary thing is some of this starts to get into the Realm of MS.

sometimes optic neuritis is a precursor to development of MS, so if you have optic neuritis, your doctor may recommend an MRI. If imaging shows "white matter" lesions indicating damage to myelin in nerve fibers, there is a 56 percent chance of developing MS within 10 years. But even with normal results, a person with optic neuritis has a 22 percent chance of developing MS.

Maybe it's just some sinus pressure.
Id make sure you see that mri report.

3 Neurologists and an MRI later - 'normal'.

14 hours ago, guitarman01 said:

Worst case scenario. The progression.
Blood flow. Nerve Damage. Muscle Damage.
Ischemic optic neuropathy is damage of the optic nerve caused by a blockage of its blood supply.
The scary thing is some of this starts to get into the Realm of MS.

sometimes optic neuritis is a precursor to development of MS, so if you have optic neuritis, your doctor may recommend an MRI. If imaging shows "white matter" lesions indicating damage to myelin in nerve fibers, there is a 56 percent chance of developing MS within 10 years. But even with normal results, a person with optic neuritis has a 22 percent chance of developing MS.

Maybe it's just some sinus pressure.
Id make sure you see that mri report.

Yeah this is a pretty bold statement to make. I understand it's often better to be transparent when it comes to linking symptoms to conditions but think about what you're typing first. No one really needs to read this...

I often wake up with blocked sinuses, so ruling that out first is my first port of call

8 hours ago, TrueJustice said:

RU-486drug - who seriously would entertain taking this abortion drug??

If youve taken it, pls share experience, Im curious.

Im seeing nothing on internet that its used forenergy, Im only seeing that its used for aborting life. Id be physically sick ingesting something like that.

It blocks the cortisol receptors and so it can help resensitize your cortisol receptors. Also affects progesterone receptors and estrogen to some extent.

If you think its such a ridiculous treatment, read this study - https://www.nature.com/articles/tp201398

Shows that ATRA (metabolite of accutane) can induce Hypothalamus-Pituitary-Adrenal (HPA) axis hyperactivity by dysregulating the glucocorticoid receptors (cortisol receptors). Guess what normalizes the axis? RU-486 (mifepristone).

By the way, lots of PFS guys have used RU-486 and reported huge benefits in many areas including libido. I haven't known of any PAS guys with CFS who have tried it so would be worth testing.

Why would you be so scared of a pill like this? Women all around the world take these pills frequently in far higher doses than you would need to take. I highly doubt you are going to grow horns from your heads (though after taking Accutane, I wouldn't say its impossible).

I still haven't tried as my order never went through due to bank issues and then didn't get round to ordering more. I know of only two post accutane people who used it. They reported improve mood, felt good, calmer. But no improvement in libido. Again though, thats a small sample size. Who knows, it may massively benefit other peoples libido.

1 hour ago, flynn said:

It blocks the cortisol receptors and so it can help resensitize your cortisol receptors. Also affects progesterone receptors and estrogen to some extent.

If you think its such a ridiculous treatment, read this study - https://www.nature.com/articles/tp201398

Shows that ATRA (metabolite of accutane) can induce Hypothalamus-Pituitary-Adrenal (HPA) axis hyperactivity by dysregulating the glucocorticoid receptors (cortisol receptors). Guess what normalizes the axis? RU-486 (mifepristone).

By the way, lots of PFS guys have used RU-486 and reported huge benefits in many areas including libido. I haven't known of any PAS guys with CFS who have tried it so would be worth testing.

Why would you be so scared of a pill like this? Women all around the world take these pills frequently in far higher doses than you would need to take. I highly doubt you are going to grow horns from your heads (though after taking Accutane, I wouldn't say its impossible).

I still haven't tried as my order never went through due to bank issues and then didn't get round to ordering more. I know of only two post accutane people who used it. They reported improve mood, felt good, calmer. But no improvement in libido. Again though, thats a small sample size. Who knows, it may massively benefit other peoples libido.

I've heard of the correlation, which is interesting, but sadly, no study ever follows up post Accutane to check for remaining HPA dysregulation, whether human or rat, especially years after.

So its important to get thorough blood work with your Dr to find out if this is indeed your issue.

E.g. The above was 19 days into Tane exposure. It would be interesting to know the human equivalent dosage as well.

And if you have this hyperactivity, how long do you take RU-486 for and what dose? You'd want to be under heavy supervision of a specialist, I'd imagine.

Its a bit of a mystery, where you're the guinea pig. But , you do have a point in that its a medication already taken by many people , so safety is established I suppose.

I know the feeling wanting to jump into treatment. I tested under range on cortisol and low- normal on free T. I ordered Comid before my next results came back, however they showed normal , mid range cort (he also did acth and urinary to double check), and mid range for T, so I held off taking it, yet my symptoms remain!

It can be frustrating indeed. Your research is appreciated. Are you going to try and re order? Did you also get some hormonal blood work (sorry if you already mentioned)?

10 minutes ago, mikez said:

I've heard of the correlation, which is interesting, but sadly, no study ever follows up POST Accutane to check for remaining HPA dysregulation, whether human or rat, especially years after.

So its important to get thorough blood work with your Dr to find out if this is indeed your issue.

E.g. The above was 19 days INTO Tane exposure. It would be interesting to know the human equivalent dosage as well.

And if you have this hyperactivity, how long do you take RU-486 for and what dose? You'd want to be under heavy supervision of a specialist, I'd imagine.

Its a bit of a mystery, where you're the guinea pig. But , you do have a point in that its a medication already taken by many people , so safety is established I suppose.

I know the feeling wanting to jump into treatment. I tested under range on cortisol and low- normal on free T. I ordered Comid before my next results came back, however they showed normal , mid range cort (he also did acth and urinary to double check), and mid range for T, so I held off taking it, yet my symptoms remain!

It can be frustrating indeed. Your research is appreciated. Are you going to try and re order? Did you also get some hormonal blood work (sorry if you already mentioned)?

Yes these are all good questions. In reality, there probably never will be many studies into long term effects of Accutane, so we have to figure this out on our own. PFS people recommend taking 50mg per day for 3-4 days then stopping and seeing how you feel. There are guy who have taken similar to dosages for up to 12 days. I mention this on my forum. But I think slightly higher dosages may necessary. One pill is usually 200mg for perspective. When you take it, you just need to look out for any obvious estrogen sides I believe.

I may do in the future, I don't think this will fix the route of the problem though as I'm starting to firmly believe the sexual dysfunction (my main concern) relates to 5-Alpha-Reductase. So my next trials will involve substances which increase 5AR activity/expression.

Again though, if you suffer from CFS and conditions which appear to involve cortisol. RU-486 may be well worth trying if you're symptoms really bother you.

I still need to get estrogen, cortisol and progesterone checked. Of all tests, my DHEA-S was abnormally high, well above top range of scale. My FSH is unusually low for my age. Everything else was normal. Again this blood results fit in with the 5AR theory. But we need as many blood results as possible.

5 hours ago, mikez said:

3 Neurologists and an MRI later - 'normal'.

Unfortunately my MRI wasnt.
I've had 2 mri's some years apart, the first Mri wasnt even normal after they went back and looked at it years later, even though they told me it was at the time.
How many years post tane and what kind of dosage and duration were you on again?

2 hours ago, Iamme. said:

Yeah this is a pretty bold statement to make. I understand it's often better to be transparent when it comes to linking symptoms to conditions but think about what you're typing first. No one really needs to read this...

I often wake up with blocked sinuses, so ruling that out first is my first port of call

I have your eye symptoms. One eye has always been worse. It was more recently followed by stinging nerve pain that shoots right into the eye, and possible loss of vision.
I've seen the possible associations and speak from experience.
Not just or necessarily MS, but you can look at metabolic diseases like diabetes as well.
If your getting a brain MRI they probably already have some associations in mind, it will also show your pituitary gland and if your sinuses are clear. My sinuses were clear and my pituitary gland appeared normal.

From what I've seen so far, I might be the progression. I might be the worst case scenario.
Obviously what happened or is happening is more than an annoyance.
Most of you are still relatively young or at least in your 30s.
Im trying to catch things before it might have the potential to become a more serious problem.
If i am aware of some things that others aren't, then yes they should be made aware.
And yes i know some of the things I say are not a pep talk, but I am well beyond that at this point.

3 hours ago, flynn said:

Yes these are all good questions. In reality, there probably never will be many studies into long term effects of Accutane, so we have to figure this out on our own. PFS people recommend taking 50mg per day for 3-4 days then stopping and seeing how you feel. There are guy who have taken similar to dosages for up to 12 days. I mention this on my forum. But I think slightly higher dosages may necessary. One pill is usually 200mg for perspective. When you take it, you just need to look out for any obvious estrogen sides I believe.

I may do in the future, I don't think this will fix the route of the problem though as I'm starting to firmly believe the sexual dysfunction (my main concern) relates to 5-Alpha-Reductase. So my next trials will involve substances which increase 5AR activity/expression.

Again though, if you suffer from CFS and conditions which appear to involve cortisol. RU-486 may be well worth trying if you're symptoms really bother you.

I still need to get estrogen, cortisol and progesterone checked. Of all tests, my DHEA-S was abnormally high, well above top range of scale. My FSH is unusually low for my age. Everything else was normal. Again this blood results fit in with the 5AR theory. But we need as many blood results as possible.

Interesting..I had no idea these guys were only trying a short course of 4 or 12 days...that makes it seem much less 'scary'. However, it appears I don't have high cortisol. For a while it was low, but managed to get the last couple readings normal.I have never had it over the normal range though Correct me if I'm wrong, the study showed elevations in cortisol and RU-486 helped lower it?

3 hours ago, guitarman01 said:

8 hours ago, mikez said:

3 Neurologists and an MRI later - 'normal'.

Unfortunately my MRI wasnt. How many years post tane and what kind of dosage and duration were you on again? Do you guys have eye floaters?

I don't have eye floaters, just right side pressure behind the eye. 10 years post tane. Was on 6 months with 4 being at 80mg, and 2 tapering being tapering months. Sorry to hear about your MRI. Was any treatment offered?

On 3/13/2018 at 10:28 PM, flynn said:

Agreed, the brain damage theory is a possible cause/reason. Again sorry for all the long posts. I do have a few things to say about this though:

1. When these studies look at changes in brain metabolism/activity/blood flow. They find changes/persistent changes. Is this surprising? We know that there are persistent changes to the activity of our own neural pathways such as the dopaminergic reward pathway. We all know ourselves that major pathways in the brain aren't working as they once were (they are no longer being activated). Which factors in the brain do you think alter metabolism/activity/blood flow? Surely the activity of major neural pathways by neurotransmitters like Dopamine plays a pretty significant role in determining the metabolism/activity/blood flow of a brain region. I mean ultimately this is the core function of the brain. Do you really think that if we managed to fix this and find a way to reactivate these pathways through through whatever the cure ends up working, that you wouldn't see a large increase in brain metabolism/activity/blood flow in specific regions of the brain as well?

Brain Damage is not just hippocampal cell death, it is also changes in brain metabolism. Things like dopamine regulation have been shown to be helped by meditation, when damaged by something like drug addiction. The other supplements I recommended in my google docs folder will help as well.

"A pilot study of the effects of meditation on regional brain metabolism in distressed dementia caregivers"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3558935/

The groups did not differ on measures of mood, mental and physical health, and burden at baseline and follow-up. When comparing the regional cerebral metabolism between groups, significant differences over time were found in the bilateral cerebellum (p < 0.0005), right inferior lateral anterior temporal (p < 0.0005), right inferior frontal (p = 0.001), left superior frontal (p = 0.001), left associative visual (p = 0.002) and right posterior cingulate (p = 0.002) cortices.

2. Just to reinstate, studies looking at blood flow. Dopamine is a vasodilator. Activity of pathways will effect the blood flow to regions of the brain. The orbitofrontal cortex receives dopaminergic signals. What I'm saying is, there may be altered blood flow now. But if you were able to reactivate the right pathways, we may see a recovery of some of that blood flow/activity.

I believe my brain rehab, of which both diet supplements and daily meditation are an important part, will give you the best possible recovery possible. The study I linked above also shows it

3. For the sexual dysfunction symptoms: People have reported experiencing recovery or partial recovery of the sexual function (libido etc.) for brief or long periods. If the sexual dysfunction side effect was caused by permanent brain damage, how could anyone ever experience any significant improvement in these symptoms. Surely if the pathway has been damaged/destroyed, it will not longer work. Additionally, people have reported periods of losing sex drive/libido for a week on Accutane for it then to return. This makes no sense in light of brain damage.

Brain damage can affect hormone regulation, make you more vulnerable to stress or fatigue. If your T is lowered due to stress and hormone dysfunction, and you are depressed and fatigued, it isn't surprising if your libido is significantly decreased. If you want the three supplements to combat that the most, try Zinc, Creatine and Fish Oil. If there is a chance you are currently malnourished, throw plenty of protein (>1.5g/kg) and a multi in as well.

4. I'll grant you that Accutane damages the hippocampus whilst you are on it. But this still doesn't explain sexual dysfunction and this doesn't mean that neurogenesis (and the damage) in the hippocampus can't necessarily be recovered overtime by substance/supplements which stimulate hippocampal neurogenesis.

It is your best chance, in my opinion. Personally I think given a healthy body and mind, human sexuality will revive spontaneously. The supplements are cheap and safe, and would be good for you even if you are already healthy, which cannot be said for some of the regimes posted here. I strongly recommend meditation as well, while the supplements really helped my body, the biggest improvements to my mood happened when I started meditating, likely due to being able to better manage stress and anxiety.

Lastly, 2 things annoy me:

1; If you don't think sexual function can ever be healed, by healing the mind, or by fixing hormones, then what is your solution? Unless I can guarantee100% that it will work for everyone, should I not contribute and keep my mouth shut?

2; Even if this only had a 10% chance of working, I would have tried it when I was at my worst, especially because its so simple and safe. I can literally sum up my treatment in a sentence.

"Buy creatine, fish oil, coq10, zinc, multivitamins and a decent protein powder, take the recommended dosages for all of these, and try to meditate for 20 minutes a day"

Right now people are taking abortion drugs, prospecia, and other stuff, which seems much more expensive and risky then taking something like Creatine, which is shown to heal the brain, as well as boost DHT and T and have limited to no side effects.

Here is the google docs with all the extra info again.
https://docs.google.com/document/d/1gGkP_NQ8tmYkOADlG2VuEX17YvQJKgnfcEtgy5_6y7c/edit

5 minutes ago, Fchawk said:

Here is the google docs with all the extra info again.
https://docs.google.com/document/d/1gGkP_NQ8tmYkOADlG2VuEX17YvQJKgnfcEtgy5_6y7c/edit Here is the google docs with all the extra info again.
https://docs.google.com/document/d/1gGkP_NQ8tmYkOADlG2VuEX17YvQJKgnfcEtgy5_6y7c/edit

All that info is very useful and your opinion is appreciated. Obviously its always better to get others opinions, so never "keep your mouth shut".

I know hippocampal damage is not only form of brain damage, I just used that as an example because its one of the few areas of the brain that Accutane has been shown to inhibit neurogenesis.I have literally just started trying to meditate. Will start trying to do it two times a day. I agree it could help people significantly with anxiety and just dealing with the situation they find themselves in (if we ever get out of this, we should be pretty incredible characters to have dealt with this shit for so long).

I agree that supplements and meditation are all very useful and can help our condition and improve dopamine function etc. But given the severity of these symptoms and the long lasting nature of them. It makes me very skeptical that simply meditating or supplementation can completely heal or reverse this condition. I may be wrong, but I have a strong feeling changes in gene expression have occurred. We already know this to be the case in the skin. Why then wouldn't this has happened in the brain? Changing this expression through gene therapy seems like most probable way of fully reversing this damage, and we would likely enhance the libido significantly as it could lead to higher than normal levels of brain DHT and other neurosteroids.

I agree that some of the current treatment avenues like Finasteride are highly risky, but I understand why people want to try. Given a severe syndrome like this, the treatment is likely to involve doing something severe.

19 hours ago, TrueJustice said:

Sorry which part of the protocol addresses the severe chronic fatigue many of us suffer from?

We spend a shit load of time talking about sexual sides and depression ( myself included) for good reason as we want to cure these issues but what about the chronic fatigue that most have going on simultaneously??

You could fix the sexual issues but if youre still out of your mind with fatigue youre going to continue to be unhappy!!

Does oral coenzyme Q10 plus NADH supplementation improve fatigue and biochemical parameters in chronic fatigue syndrome?
https://www.ncbi.nlm.nih.gov/pubmed/25386668

In chronic fatigue syndrome, the decreased levels of omega-3 poly-unsaturated fatty acids are related to lowered serum zinc and defects in T cell activation.
https://www.ncbi.nlm.nih.gov/pubmed/16380690

I believe that the brain damage is correlated with the fatigue as well, as the supplements shown to help the brain also seem to fatigue, at least the ones that have been studied

I admit to being a bit frustrated though. Would you not take a treatment because it only has direct evidence to healing only 75% of your sides? It feels like even though i have so much evidence, have literally put in about 1.5k hours at this stage looking into this shit, then someone is always like "What about the copper blood levels? Zinc would interact with that badly" or "I've tried fish oil before and I am not healed, so I know it doesn't work"

Anyway google meditation and yoga and their effects on chronic fatigue. The best thing about yoga when compared to other forms of exercise is it seems to help the mindmore

Isometric yoga improves the fatigue and pain of patients with chronic fatigue syndrome who are resistant to conventional therapy: a randomized, controlled trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4269854/

A two-year follow-up case of chronic fatigue syndrome: substantial improvement in personality following a yoga-based lifestyle intervention.
https://www.ncbi.nlm.nih.gov/pubmed/25825998
Just 1 dude in this one, but improved a lot

"Buy creatine, fish oil, coq10, zinc, multivitamins and a decent protein powder, take the recommended dosages for all of these, and try to meditate for 20 minutes a day" In the case of CFS add yoga as well, though everything else will help too

4 hours ago, mikez said:

I've heard of the correlation, which is interesting, but sadly, no study ever follows up POST Accutane to check for remaining HPA dysregulation, whether human or rat, especially years after.

So its important to get thorough blood work with your Dr to find out if this is indeed your issue.

E.g. The above was 19 days INTO Tane exposure. It would be interesting to know the human equivalent dosage as well.

And if you have this hyperactivity, how long do you take RU-486 for and what dose? You'd want to be under heavy supervision of a specialist, I'd imagine.

Its a bit of a mystery, where you're the guinea pig. But , you do have a point in that its a medication already taken by many people , so safety is established I suppose.

I know the feeling wanting to jump into treatment. I tested under range on cortisol and low- normal on free T. I ordered Comid before my next results came back, however they showed normal , mid range cort (he also did acth and urinary to double check), and mid range for T, so I held off taking it, yet my symptoms remain!

It can be frustrating indeed. Your research is appreciated. Are you going to try and re order? Did you also get some hormonal blood work (sorry if you already mentioned)?

Yes these are all good questions. In reality, there probably never will be many studies into long term effects of Accutane, so we have to figure this out on our own. PFS people recommend taking 50mg per day for 3-4 days then stopping and seeing how you feel. There are guy who have taken similar to dosages for up to 12 days. I mention this on my forum. But I think slightly higher dosages may necessary. One pill is usually 200mg for perspective. When you take it, you just need to look out for any obvious estrogen sides I believe.

I may do in the future, I don't think this will fix the route of the problem though as I'm starting to firmly believe the sexual dysfunction (my main concern) relates to 5-Alpha-Reductase. So my next trials will involve substances which increase 5AR activity/expression.

Again though, if you suffer from CFS and conditions which appear to involve cortisol. RU-486 may be well worth trying if you're symptoms really bother you.

I still need to get estrogen, cortisol and progesterone checked. Of all tests, my DHEA-S was abnormally high, well above top range of scale. My FSH is unusually low for my age. Everything else was normal. Again this blood results fit in with the 5AR theory. But we need as many blood results as possible.

7 hours ago, Iamme. said:

Yeah this is a pretty bold statement to make. I understand it's often better to be transparent when it comes to linking symptoms to conditions but think about what you're typing first. No one really needs to read this...

I often wake up with blocked sinuses, so ruling that out first is my first port of call

Thats all @guitarman01does. Not the most motivating person on this forum, thats for sure. He spews loads and loads of information but then refuses to break any of it down and explain it simplistically. Then he uses the excuse its a part of my plan this information is for my own use.

Like wtf ?

Annoys me the most tbh.

1 hour ago, flynn said:

All that info is very useful and your opinion is appreciated. Obviously its always better to get others opinions, so never "keep your mouth shut".

I know hippocampal damage is not only form of brain damage, I just used that as an example because its one of the few areas of the brain that Accutane has been shown to inhibit neurogenesis. I have literally just started trying to meditate. Will start trying to do it two times a day. I agree it could help people significantly with anxiety and just dealing with the situation they find themselves in (if we ever get out of this, we should be pretty incredible characters to have dealt with this shit for so long). 

I agree that supplements and meditation are all very useful and can help our condition and improve dopamine function etc. But given the severity of these symptoms and the long lasting nature of them. It makes me very skeptical that simply meditating or supplementation can completely heal or reverse this condition. I may be wrong, but I have a strong feeling changes in gene expression have occurred. We already know this to be the case in the skin. Why then wouldn't this has happened in the brain? Changing this expression through gene therapy seems like most probable way of fully reversing this damage, and we would likely enhance the libido significantly as it could lead to higher than normal levels of brain DHT and other neurosteroids. 

I agree that some of the current treatment avenues like Finasteride are highly risky, but I understand why people want to try. Given a severe syndrome like this, the treatment is likely to involve doing something severe. 
 

Chronic stress induces persistent changes in global DNA methylation and gene expression in the medial prefrontal cortex, orbitofrontal cortex, and hippocampus.
https://www.ncbi.nlm.nih.gov/pubmed/26946265
Chronic stress is associated with a plethora of cognitive symptoms such as emotional dysregulation and impaired executive function that have been attributed to modifications in neuroanatomy in the orbitofrontal cortex (OFC), medial prefrontal cortex (mPFC), and hippocampus (HPC)(...)In general, chronic stress induced persistent changes in gene expression in the three brain regions we examined and these changes could be associated with the commonly reported cognitive symptoms. The current study highlights the region- and sex-dependent nature of the brain's response to chronic stress and the difficulty we face when attempting to develop treatment options.

https://news.wisc.edu/study-reveals-gene-expression-changes-with-meditation/
 

.

Gene expression is misunderstood. It is basically your body being situational, and adapting on the fly to changing conditions. Chronic stress, changes to diet, etc can affect gene expression. Obviously poisoning ourselves, and the subsequent brain damage, fucking up our stress and sex hormones and their receptors, etc over a long period of time is going to affect gene expression. Gene expression is reversible, its just that its become the default so you need to put effort into getting yourselves out of the rut.

(EDIT: 50% of my google doc references hippocampal brain damage, its the main part, and how to start promoting neurogenesis again. I was just saying you can cure other forms of brain damage in addition to it.)

Anyway, I need to get up in 3.5 hours for Uni, and I can't rebut every single argument and prove that my cure cures every symptom. I am not going to bother defending this anymore, it takes too much time. If you aren't willing to try the stuff that has the science backing it and is safe because it isn't severe enough and my proposed treatment is too simple and accessible, and is too sourced, legitimate and obvious to actually work, then go maybe up it to an hour of meditation, an hour of yoga daily, and at least 200g of organically grown salad per day, which you ideally saw grow with your own eyes. All meat has to be grass fed, be sourced within 20 miles, and if you don't know the animals name then chance of recovery is halved. Make sure all fish is tested for Mercury, the water you drink is filtered for fluoride. Get rid of all processed food, and cut sugar from your diet completely, except organic fruit. Drink 1 liter of Deep Seawater per day, diluted with 1 liter fresh water. Make sure to avoid margarine like the plague. Take cold showers throughout the year, practice abstinence to avoid spilling vital nutrients and ingraining bad reward circuits in the brain, avoid all external sources of hyperstimulation like computer games and movies, and also artificial light within 2 hours of bed time. Make sure to spend at least 9 hours in bed a day, and don't vary your sleep patterns more than 30 minutes day to day. Make sure to get at least 20 minutes of sunlight a day, though in Summer avoid the middle of the day when the sun is too oppressive

However, if you actually are trying to lead a semi-normal life whilst recovering, and want the basics that are scientifically proven to make a difference in your life, then:

"Buy creatine, fish oil, coq10, zinc, multivitamins and a decent protein powder, take the recommended dosages for all of these, and try to meditate for 20 minutes a day"(if its early days take some k2 and vitD as well, that will get your retinoids in check post tane)

Lastly meditating 20 minutes every day is fucking hard, especially after what accutane does to our brains/concentration. Don't think that shit is easy until you've done it for a week. If you get a week straight in your first 3 months of trying you are better than me, congrats  
(Sorry flynn, you are actually an awesome and positive part of this community, and many others are too, but I think being here on this thread for 2.5 years has done me a number, and I simply have spent so much time here, and ITT if you want to be heard you kinda have to be persistent and keep shouting over the top of others, and you will probably be buried and forgotten anyway, no matter how much time you put into your message, and I hate it).

Good luck everyone! 

Has anyone ever thought our DHEA-s levels are so high because were trying to fight some form of inflammation....? No?

2 hours ago, Colinboko said:

Thats all @guitarman01does. Not the most motivating person on this forum, thats for sure. He spews loads and loads of information but then refuses to break any of it down and explain it simplistically. Then he uses the excuse its a part of my plan this information is for my own use.

Like wtf ?

Annoys me the most tbh.

Refuses? I have already spent more time with you then most. Could you give me an example of what your talking about? And be specific.
I have made a point to simplify things as much as I possibly can and do try to explain things but im not trying to spend all day on here. I have a full time job.
One thing I noticed is that you are extremely sensitive.
This is probably something alot of you deal with in real life as well am I right?
Overly aggressive when the situation doesn't call for it?
Ive been there.
I know its hard with what some people are dealing with but we need cool heads going forward.
Dont let emotion dictate thoughts.

On 3/15/2018 at 12:35 AM, Fchawk said:

Chronic stress induces persistent changes in global DNA methylation and gene expression in the medial prefrontal cortex, orbitofrontal cortex, and hippocampus.
https://www.ncbi.nlm.nih.gov/pubmed/26946265
Chronic stress is associated with a plethora of cognitive symptoms such as emotional dysregulation and impaired executive function that have been attributed to modifications in neuroanatomy in the orbitofrontal cortex (OFC), medial prefrontal cortex (mPFC), and hippocampus (HPC)(...)In general, chronic stress induced persistent changes in gene expression in the three brain regions we examined and these changes could be associated with the commonly reported cognitive symptoms. The current study highlights the region- and sex-dependent nature of the brain's response to chronic stress and the difficulty we face when attempting to develop treatment options.

https://news.wisc.edu/study-reveals-gene-expression-changes-with-meditation/
 

œTo the best of our knowledge, this is the first paper that shows rapid alterations in gene expression within subjects associated with mindfulness meditation practice.

Richard J. Davidson

 

 

 

 

 

 

 

 

.

Gene expression is misunderstood. It is basically your body being situational, and adapting on the fly to changing conditions. Chronic stress, changes to diet, etc can affect gene expression. Obviously poisoning ourselves, and the subsequent brain damage, fucking up our stress and sex hormones and their receptors, etc over a long period of time is going to affect gene expression. Gene expression is reversible, its just that its become the default so you need to put effort into getting yourselves out of the rut.

(EDIT: 50% of my google doc references hippocampal brain damage, its the main part, and how to start promoting neurogenesis again. I was just saying you can cure other forms of brain damage in addition to it.)

Anyway, I need to get up in 3.5 hours for Uni, and I can't rebut every single argument and prove that my cure cures every symptom. I am not going to bother defending this anymore, it takes too much time. If you aren't willing to try the stuff that has the science backing it and is safe because it isn't severe enough and my proposed treatment is too simple and accessible, and is too sourced, legitimate and obvious to actually work, then go maybe up it to an hour of meditation, an hour of yoga daily, and at least 200g of organically grown salad per day, which you ideally saw grow with your own eyes. All meat has to be grass fed, be sourced within 20 miles, and if you don't know the animals name then chance of recovery is halved. Make sure all fish is tested for Mercury, the water you drink is filtered for fluoride. Get rid of all processed food, and cut sugar from your diet completely, except organic fruit. Drink 1 liter of Deep Seawater per day, diluted with 1 liter fresh water. Make sure to avoid margarine like the plague. Take cold showers throughout the year, practice abstinence to avoid spilling vital nutrients and ingraining bad reward circuits in the brain, avoid all external sources of hyperstimulation like computer games and movies, and also artificial light within 2 hours of bed time. Make sure to spend at least 9 hours in bed a day, and don't vary your sleep patterns more than 30 minutes day to day. Make sure to get at least 20 minutes of sunlight a day, though in Summer avoid the middle of the day when the sun is too oppressive

However, if you actually are trying to lead a semi-normal life whilst recovering, and want the basics that are scientifically proven to make a difference in your life, then:

"Buy creatine, fish oil, coq10, zinc, multivitamins and a decent protein powder, take the recommended dosages for all of these, and try to meditate for 20 minutes a day"(if its early days take some k2 and vitD as well, that will get your retinoids in check post tane)

Lastly meditating 20 minutes every day is fucking hard, especially after what accutane does to our brains/concentration. Don't think that shit is easy until you've done it for a week. If you get a week straight in your first 3 months of trying you are better than me, congrats  
(Sorry flynn, you are actually an awesome and positive part of this community, and many others are too, but I think being here on this thread for 2.5 years has done me a number, and I simply have spent so much time here, and ITT if you want to be heard you kinda have to be persistent and keep shouting over the top of others, and you will probably be buried and forgotten anyway, no matter how much time you put into your message, and I hate it).

Good luck everyone! 

 

 

 

 

 

 

 

 

 

Yeah fair enough I understand. That is why I made a new forum for Post accutane so we don't have to use this format. It's way too disorganised and random for a topic as complicated as this - [removed]

On 3/15/2018 at 12:54 AM, Colinboko said:

Has anyone ever thought our DHEA-s levels are so high because we™re trying to fight some form of inflammation....? No? 

No but does DHEA-S help fight inflammation?

On 3/15/2018 at 2:49 AM, flynn said:

Yeah fair enough I understand. That is why I made a new forum for Post accutane so we don't have to use this format. It's way too disorganised and random for a topic as complicated as this - [removed]
No but does DHEA-S help fight inflammation?

I believe so? Im just wondering if its our brain being like hey save me from this chronic inflammation and so DHEA is pumping out like crazy. (Obviously not enough to make a profound effect) I got my cortisol results back and theyre relatively normal. Im just still hooked on the fact that prednisone had completely eradicated all symptoms for a PAS sufferer (maybe even a couple) and quite a few PFS sufferers as well, yet no one wants to experiment with it. If I could get my hands on some, I sure as hell would. And if I felt better Id be on it for life, regardless of the risks. Anything is better than living with this hell. The biggest change I noticed since the onset of all this bullshit was a crazy shift in my immune system. When I tell you I havent gotten sick in the longest time, I truly mean it. If a scratchy throat comes about, its gone the next day. Bacteria is constantly being killed so nothing to cause acne. Dry flaky earwax could be a cause of dermatitis in the ear. Dry skin is also a symptom of inflammation. Inflammation in the brain could be causing ALL of the mental sides. Why do I feel worse after I wake up? Maybe because my immune system runs rampant when asleep. Telogen effluvium body wide? Inflammation. Chronic soft green stool? Inflammation. Im just not sure why we havent tried this route at all! CRP and ESR tests have been proven to not be the greatest indicators when it comes to low grade body wide inflammation. Has anyone had a cytokine panel done? Interleukins?

@guitarman01Wouldnt you be sensitive? Are you even affected by this drug like you say you are? Your posts are confusing. Anyone could tell you that. I understand I lash out here and there, but thats because of how fucking exhausted I am. How you can even sit there and understand what you post is astounding to me because your fog or cognitive function is clearly not all that bad.

I just found this thread and I'm scared as hell now. I only took Accutane for 4 days at 20mg (so only 80mg in total) and suddenly had an anxiety attack, which I never even knew what it felt like before. I immediately stopped. One day later I couldn't get a hard erection anymore (maybe 50%).

It has been two weeks since then and I STILL can't get an erection. Up until the day I quit I got random ones all day and held them forever, now I don't get any without forcing them. And even then they are very soft. Every time I see something arousing it's like I feel the stimulus going into the penis, but then it just feels weird instead of causing an erection. This can't be from the Accutane, can it? It HAS to be anxiety, right? I mean, I only took the drug for 4 days. And only 20mg/day. What the hell is this? I'm freaking out right now, I can't be impotent because of this crap, can I? Please tell me there's a good chance it'll return to normal, since I barely took anything.

Well I tried.

1 hour ago, Colinboko said:

Wouldnt you be sensitive?

Only to ignorance.

1 hour ago, Colinboko said:

Are you even affected by this drug like you say you are?

Am I in the twilight zone? I just got done posting this to @flynn
I have directly posted this to you multiple times.
If this is your level of memory recallor comprehension you have no business criticizing any of my posts.
We are done.

MRI BRAIN WO CONTRAST - Details

Study Result

Impression

Narrative

47 minutes ago, guitarman01 said:

Well I tried.

Only to ignorance. Am I in the twilight zone? I just got done posting this to @flynn
I have directly posted this to you multiple times.
If this is your level of memory recallor comprehension you have no business criticizing any of my posts.
We are done.

MRI BRAIN WO CONTRAST - Details

Study Result

Impression

1. No acute intracranial findings noted.
2. Volume loss of brain parenchyma is seen, advanced for patient's
age. No intracranial mass lesion or mass effect or midline shift
noted.

Narrative

PROCEDURE: MRI BRAIN WO IV CONTRAST

REASON FOR EXAM: Headache

COMPARISON: CT head, 9/10/2016; MRI head, 8/10/2013

TECHNIQUE: Multiplanar multisequence imaging of the head was performed
without intravenous contrast.

FINDINGS:

There is no restricted diffusion or acute infarct noted. No other
acute intracranial findings are seen. Gradient-echo imaging reveals no
intracranial hemorrhage or blood products.

There is no focal parenchymal edema or mass lesion or mass effect or
midline shift or extra-axial fluid collection noted. There is mild
volume loss of brain parenchyma, advanced for patient's age. No focal
parenchymal signal abnormality identified.

Pituitary gland is within normal limits. Posterior fossa structures
are within normal limits. There is thinning of the body of the corpus
callosum. This finding is stable compared to prior MRI, 8/10/2013.

Paranasal sinuses and mastoid air cells are clear. Orbits are within
normal limits.

Test Name	DYS1
DYSAUTONOMIA EVALUATION SERUM POSITIVE
Test Result	SCANNED REPORT INTO EPIC

Youre right. Arguing will get us nowhere. I just deleted what I said, I apologize. I have boiling points with this damn disease.

Now is your atrophy reversible? What other knowledge did you gain from this discovery? Have you had cytokine panels done ever?

Why havent you trialed steroids? What if it helps tremendously? I get it. Finding the root cause. But just so you know that youre looking down the right alley, why not experiment with prednisone? Especially if you were positive for dysautonomia. Im just scratching my head as to why no one is giving it a shot.