Repairing the long-term damage from Accutane

Started by IndigoRush IndigoRush

15,621 posts in this topic


https://link.springer.com/article/10.1007%2Fs12020-018-1593-5

https://content.iospress.com/articles/international-journal-of-risk-and-safety-in-medicine/jrs745

What about a petition for accutane?

Does anybody feel that they can contribute?

Once again I highlight how important it is to report your side effects.

https://www.researchgate.net/publication/323738200_FDA_Petition_to_Remove_Finasteride_From_United_States_Drug_Market

Ultimately getting recognition will lead to research for cures. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704911/

Bremner

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first day almost done 

so far have 16mg of prednisone floating around in my system and don’t feel anything too drastic yet. Two more pills before bed. Definitely less achey and weirdly more clear. Nothing to write home about.. gonna try and finish this out though even if nothing happens. 

Edited by Colinboko

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12 hours ago, hatetane said:

https://link.springer.com/article/10.1007%2Fs12020-018-1593-5

https://content.iospress.com/articles/international-journal-of-risk-and-safety-in-medicine/jrs745

What about a petition for accutane?

Does anybody feel that they can contribute?

Once again I highlight how important it is to report your side effects.

https://www.researchgate.net/publication/323738200_FDA_Petition_to_Remove_Finasteride_From_United_States_Drug_Market

Ultimately getting recognition will lead to research for cures. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704911/

Bremner

What area did you think they’ll likely focus on??

Gut, Brain, Liver, Thyroid....I could go on.

If we’re to believe some posts over the years there have already been cures, everything from liver flushes to iodine therapy.

Either these people are bullshitting or they fluked it.

Having said that, your point about reporting sides is bang on, if nothing else hopefully it leads to a banning of these super dangerous drugs - that’s a good thing for everybody!!

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18 hours ago, TrueJustice said:

What area did you think they’ll likely focus on??

Gut, Brain, Liver, Thyroid....I could go on.

If we’re to believe some posts over the years there have already been cures, everything from liver flushes to iodine therapy.

Either these people are bullshitting or they fluked it.

Having said that, your point about reporting sides is bang on, if nothing else hopefully it leads to a banning of these super dangerous drugs - that’s a good thing for everybody!!
Recovery is one thing - maybe some people did recover but I know we are all slightly skeptical about this.
A cure would be a protocol that works for all. The PFS foundation are trying to do this and so are Rxisk.
This is Why Rxisk ask everyone to provide their case history and to list the things they tried and the things that helped  even is it was just in the shot term. The reason for this is that if experience researchers have this data 
it might hint at areas to research and give clues etc.
Once again I ask you all to report your side effects.

I have asked before and I ask again - please send be your case histories:
The email should include consent to share with regulators. Age, sex, dosage, duration. The prescribing experience(what warnings etc) and how and when the side effects became apparent etc. List all side effects and how the drug impacted your lives. Also state if you ever reported your sides and if not why not - this is an important factor!
I suspect you must all have you case histories already written - you must have shared already on this forum for instance.
I don't mind if it is a quick copy and paste if you really cant be asked to write a thorough  email - at this stage anything would do. Without you guys reporting  and without these case histories I simply have nothing to fight with so please do this for all PAS victims past, present and future.

You should all have my email by now - if not PM me.

TARGET - 100 case histories! 

Thank you all


  Edited by hatetane
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On 28/01/2017 at 7:39 PM, helpmeoutbuddies11 said:

I had bad stomach problems after accutane. Strictly follow a leaky gut diet for a while. Drink homemade kefir, kombucha tea. Take a high quality bone broth and collagen powder everyday. Stop eating tons of sugar and junk. No dairy unless it's milk kefir or raw milk. Take HCL and a good digestive enzyme with cooked meals especially after 7:30 p.m. and etc. My problems were waaaay bad. Now my stomach is all fixed up. Zero problems with stomach or digestion now. Let me know if you have any questions. 

hey man, what kind of stomach issues did you have? I think I'm experiencing something similar

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Ok

fir the people who are trying Lions Mane

Lions Mane = 5AR downregulator
Cordyceps  = 5AR upregulator (it also stops the breakdown of dopamine)

Cordy gives me good energy, no more yawning throughout the day.
sometimes a bit irritated

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Does that mean you’ve dropped taking lions mane??

No need to be taking it, there’s no benefit?

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2 hours ago, TrueJustice said:

Does that mean you’ve dropped taking lions mane??

No need to be taking it, there’s no benefit?


I am experimenting right now. Does the low suppresion from Lions Mane cause a positive rebound on the whole system, or has it to be a mix of both worlds. Interesting stuff

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11 hours ago, Walden Rev said:

I am experimenting right now. Does the low suppresion from Lions Mane cause a positive rebound on the whole system, or has it to be a mix of both worlds. Interesting stuff

I’m super curious with how you go with these 2 products.

im keen to know how you feel on both and then how you go just on one of them at a time??

The Cordyceps sounds like a beneficial product I’ve gotta say!!!

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I have never believed that pyroluria was genetic - it doesn't make sense.
There is a podcast, which I am sure I posted last year, where a doctor said he found pyrolles in the urine of a man with PFS and was able to treat him successfully. The point here is that the man had pyroluria infection not necessarily PFS. Has anyone been tested? 
Given that it is a complicated multi faceted disease, just like we understand PAS to be - following a pyroluria protocol won't hurt
Interesting that it causes anxiety.

I have some case histories trickling in but I have had no response from the vets - come on guys, we must stop this from happening to other young people. Please make the effort of just one email and I will leave you all alone.

 

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On 5/17/2018 at 2:08 AM, Colinboko said:
I had high DHEA ! 
85-690 and mine is 757

my FSH was also high 

1.6-8.0 and mine was 9.5 

What are you main persisting side effects? Do you have sexual dsyfunction? Loss of libido etc.
On 5/21/2018 at 10:14 AM, Walden Rev said:

Ok

fir the people who are trying Lions Mane

Lions Mane = 5AR downregulator
Cordyceps  = 5AR upregulator (it also stops the breakdown of dopamine)

Cordy gives me good energy, no more yawning throughout the day.
sometimes a bit irritated


Do you have any evidence/articles to back up these either of these are 5AR up or down regulators?

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Hi people,

Just a reminder, if you haven't already. Please sign up to the Post Accutane Syndrome forum. It will be very useful in the future if we grow a community there for things such as fundraising, finding research volunteers and sharing information etc. 

I think a great start would be making contact with a researcher such as Roberto Melcangi (He conducts the PFS studies) to conduct a study similar to the post finasteride study on PAS patients. To determine if PAS people have differences in neuroactive steroid levels etc.

https://pasforum.info/

Edited by flynn

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@mariovitali
Been a little bit. I'll be real brief what im currently looking at.
Im done with supplementing vitamin k2 directly. Although there is alot of positive research on k2, I believe it can become just like any other nutrient and feed the wrong bacteria. Meaning pathogens. There is evidence of this.

But im not done with this so to speak because im looking at the bacteria itself that produces k2.
Bacillus subtilis.  
Also other Bacilli species such as Bacillus coagulans and Bacillus Clausii.
The main focus will be on Bacillus subtilis for now. 
These are more newly available as supplements.
As for Lions Mane I see it as a fungus that's capable of altering the microbiome and/or mycobiome.
Alterations can happen fast. Within a matter of days.

What happens if things continue to shift in the wrong direction? 
Death and Disease. 

To give you a glimpse of what im talking about.


Microbial flora, probiotics, Bacillus subtilis and the search for a long and healthy human longevity
http://microbialcell.com/researcharticles/microbial-flora-probiotics-bacillus-subtilis-and-the-search-for-a-long-and-healthy-human-longevity/


 

Shifts in the microbiome impact tissue repair, regeneration

 
August 26, 2016
 
Stowers Institute for Medical Research
 
A definitive link between the makeup of the microbiome, the host immune response, and an organism’s ability to heal itself has been confirmed by scientists.
https://www.sciencedaily.com/releases/2016/08/160826151746.htm
@flynn
As for the other.

FDA Scrutinizes Antibacterial Products for Hormonal Disruption ...

Edited by guitarman01

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5 hours ago, guitarman01 said:
@mariovitali
Been a little bit. I'll be real brief what im currently looking at.
Im done with supplementing vitamin k2 directly. Although there is alot of positive research on k2, I believe it can become just like any other nutrient and feed the wrong bacteria. Meaning pathogens. There is evidence of this.

But im not done with this so to speak because im looking at the bacteria itself that produces k2.
Bacillus subtilis.  
Also other Bacilli species such as Bacillus coagulans and Bacillus Clausii.
The main focus will be on Bacillus subtilis for now. 
These are more newly available as supplements.
As for Lions Mane I see it as a fungus that's capable of altering the microbiome and/or mycobiome.
Alterations can happen fast. Within a matter of days.

What happens if things continue to shift in the wrong direction? 
Death and Disease. 

To give you a glimpse of what im talking about.


Microbial flora, probiotics, Bacillus subtilis and the search for a long and healthy human longevity
http://microbialcell.com/researcharticles/microbial-flora-probiotics-bacillus-subtilis-and-the-search-for-a-long-and-healthy-human-longevity/


 

Shifts in the microbiome impact tissue repair, regeneration

 
August 26, 2016
 
Stowers Institute for Medical Research
 
A definitive link between the makeup of the microbiome, the host immune response, and an organism’s ability to heal itself has been confirmed by scientists.
https://www.sciencedaily.com/releases/2016/08/160826151746.htm
@flynn
As for the other.

FDA Scrutinizes Antibacterial Products for Hormonal Disruption ...


When talking about “lions mane” and it’s ability to alter microbiome, do you mean in a good way or detrimental way??

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23 hours ago, flynn said:

What are you main persisting side effects? Do you have sexual dsyfunction? Loss of libido etc.
Do you have any evidence/articles to back up these either of these are 5AR up or down regulators?
 


Maybe the good feeling i get from Lions Mane is due to the fact that it is an aromatase inhibitor.
Next week cordyceps on his own.
Edited by Walden Rev

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On 5/23/2018 at 5:55 PM, flynn said:

Hi people,

Just a reminder, if you haven't already. Please sign up to the Post Accutane Syndrome forum. It will be very useful in the future if we grow a community there for things such as fundraising, finding research volunteers and sharing information etc. 

I think a great start would be making contact with a researcher such as Roberto Melcangi (He conducts the PFS studies) to conduct a study similar to the post finasteride study on PAS patients. To determine if PAS people have differences in neuroactive steroid levels etc.

https://pasforum.info/


Consider adding your forum to Google's index. It doesn't seem to appear in any search results at the moment. ...Not good if you want people to find it by other means than through this thread.

https://support.google.com/webmasters/answer/6259634?hl=en
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16 hours ago, Dubya_B said:

Consider adding your forum to Google's index. It doesn't seem to appear in any search results at the moment. ...Not good if you want people to find it by other means than through this thread.

https://support.google.com/webmasters/answer/6259634?hl=en

Hi Dubya,

Yes I was planning on doing this at some point and putting some money into search engine optimisation etc. for the website. But I have no experience doing these things and not much free time at the moment. I also don't work and don't intend to monetise the website. My main focus has been adding content and compiling info. I have also shared links to it on a few of the facebook accutane forums. My hope would be building a fairly large user base. Upon which we could gather extensive case histories and potentially be mobilised to fund raise to some sort of research/treatment. 

If you could provide any advice it would be hugely appreciated. 

If you have the time. I would also highly value your feedback on the info I put together on the 5 alpha reductase theory of PAS. As it was after reading one of your posts, that really got me interested in researching it more thoroughly. Obviously criticism is more than welcome -  https://pasforum.info/threads/theory-pas-and-pfs-5-alpha-reductase-enzyme-very-plausible-currently-seems-to-be-the-most-likely-cause-of-pas.9/

I've also posted about a potential method of treating PAS and PFS, provided they are indeed caused by changes in 5AR expression, that you might be interested in - https://www.pasforum.info/threads/plausible-cure-crispr-cas9-gene-editing.21/

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@guitarman01 @Dubya_B @TrueJustice @hatetane

I believe i know the full mechanism of what is going on. So i am asking you who i tagged or anyone else reading this :

If i am ready to suggest a way to get people out of this mess and to have it evaluate it by Medical professionals :

1) What do i do
2) Where do i speak about this

FWIW, My belief is that no one will listen and really look at this.


Looking forward to your thoughts / suggestions.

PS : Lion's Mane may be a 5AR Inhibitor. Not good.

https://www.ncbi.nlm.nih.gov/pubmed/16029938  

and

https://lostempireherbs.com/anti-androgenic-effects-reishi/ Edited by mariovitali

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2 hours ago, flynn said:

Hi Dubya,

Yes I was planning on doing this at some point and putting some money into search engine optimisation etc. for the website. But I have no experience doing these things and not much free time at the moment. I also don't work and don't intend to monetise the website. My main focus has been adding content and compiling info. I have also shared links to it on a few of the facebook accutane forums. My hope would be building a fairly large user base. Upon which we could gather extensive case histories and potentially be mobilised to fund raise to some sort of research/treatment. 

If you could provide any advice it would be hugely appreciated. 

If you have the time. I would also highly value your feedback on the info I put together on the 5 alpha reductase theory of PAS. As it was after reading one of your posts, that really got me interested in researching it more thoroughly. Obviously criticism is more than welcome -  https://pasforum.info/threads/theory-pas-and-pfs-5-alpha-reductase-enzyme-very-plausible-currently-seems-to-be-the-most-likely-cause-of-pas.9/

I've also posted about a potential method of treating PAS and PFS, provided they are indeed caused by changes in 5AR expression, that you might be interested in - https://www.pasforum.info/threads/plausible-cure-crispr-cas9-gene-editing.21/
Flynn,

wasn’t the 5AR theory proven false...? 

I slightly remember a study (Baylor maybe?) putting it to rest. 

Isn’t 5AR also the enzyme responsible for allopregnenolone conversion? I can still get drunk... I know a lot of PFS victims say they can’t but I still have the ability to.. isn’t allopregnenolone responsible for that? Edited by Colinboko

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12 hours ago, Colinboko said:
Flynn,

wasn’t the 5AR theory proven false...? 

I slightly remember a study (Baylor maybe?) putting it to rest. 

Isn’t 5AR also the enzyme responsible for allopregnenolone conversion? I can still get drunk... I know a lot of PFS victims say they can’t but I still have the ability to.. isn’t allopregnenolone responsible for that?

I think you’re right, that was the last I heard on that theory. Having said that, it’s got to be bloody close hasn’t it, I mean what else is there to go on??

The other thought is that our gut health is so messed up that it’s causing all these systemic issues....just another day of guessing what’s going on....

 

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