I've supplemented with copper at one point, as well as with zinc. If there is deficiency these are just one of many downstream problems. However if supplementing helps people with their symptoms, then there is an argument for it.

I don't know if this is anything, but I'll leave this here, hopes it helps 

16 hours ago, tryingtohelp2014 said:

and we do have a way to test out hypotheses. my wish for this board, would be to really start ruling out things people try to come up with. grouping people by symptoms would be even better.

for example ...everyone experiencing say....

a.) Joint pain/inflammation
b.) lethargy
c.) dry skin

please get a simple RBC copper & ceruloplasmin test. If we could get 10 people to do this, and post results. Plus you could include the# of years you are post tane. and we could plot it, to see if anything gets better or worse over time.

Such a good idea. shame history and side effects don't pop alongside name or when you go to profiles. Can't expect everyone to keep explaining themselves. Can anyone advise if this means anything - for the future off course!
http://www.ncbi.nlm.nih.gov/pubmed/23153651

Vitamin A: The Key to a Tolerant Immune System?

Does it still go back to a problem with vitamin a?
[Edited link out]
Vitamin A is crucial to a very sophisticated bi-directional mechanism that takes place in the digestive system and leads to immune tolerance across the entire gut lining.
When you are deficient in vitamin A, you veer towards a type of effector T cell called TH17 and its production of IL-17 a proinflammatory cytokine, with propensity to causing autoimmune disease.

What if we needed just enough but not too much vitamin a on a daily basis because our body can no longer store and utilize it properly. pretty much just like everything else we have looked at, accutane f'd up a process and that is the process of properly utilizing vitamin a.
We see all these studies but they are all during Accutane treatment. There are none, absolutely no Studies that are post Accutane!

and every possibility of negative effects during Accutane ie. low folate,b12, low vitamin e,low biotin, have proven to be false or in normal range post accutane. even a hyper gnmt that we have been stuck on. Thats probably normal too!

A second factor is the possible existence of genetic variants in genes encoding transport proteins that may affect vitamin A and carotenoid absorption efficiency. Genetic variations leading to modifications in the promoter region of the gene or within the amino acid sequence of the protein may affect its expression and/or activity, and thus its ability to absorb/transport its ligands. This is supported by the broad inter-individual variability observed for carotenoid assimilation [53], and by the associations found between genetic variants SR-BI and CD36 and blood concentrations of carotenoids [129,130]. However, these associations may be due to the effect of genetic variants on the expression or activity of the proteins in tissues other than the intestine (i.e., the liver). -Carotene low-converter phenotypes, probably due to genetic variation in the BCMO1 gene, have been reported in several studies [94]. If this hypothesis is supported in the future, it may be worthwhile taking it into account to provide adequate dietary amount of vitamin A and carotenoid to low responder or high responder phenotypes due to different transport and/or conversion efficacy

Evolving Insights into Vitamin A Transport
[Edited link out]
we now believe that RBP allows for vitamin A stores to be mobilized from the liver, thus enabling the body to store it for use in times of dietary insufficiency. However, individuals can survive without RBP as long as they consume sufficient quantities of dietary vitamin A, postprandial vitamin A is delivered effectively to vitamin A dependent tissues, aside from the eye. We believe that delivery of postprandial vitamin A to tissues via chylomicrons allows for humans lacking RBP to survive and live relatively normal lives, albeit with diminished or impaired vision.

idk i still think one of the keys is we still have a love/hate relationship with vitamin a after all these years.
or im completely full of shit. one of the two.

On 2/11/2016 at 9:22 AM, guitarman01 said:

Evolving Insights into Vitamin A Transport
[Edited link out]
we now believe that RBP allows for vitamin A stores to be mobilized from the liver, thus enabling the body to store it for use in times of dietary insufficiency. However, individuals can survive without RBP as long as they consume sufficient quantities of dietary vitamin A, postprandial vitamin A is delivered effectively to vitamin A dependent tissues, aside from the eye. We believe that delivery of postprandial vitamin A to tissues via chylomicrons allows for humans lacking RBP to survive and live relatively normal lives, albeit with diminished or impaired vision.

sorry, i didnt have any winstar rats available, or a high performance liquid chromatography w/UV handy.... so im going to have to trust these guys and their results, and do a............

control c/v!!!!!!!!!!!!!!!!!!!!

http://www.ncbi.nlm.nih.gov/pubmed/3679695

Abstract

hmmmm so, if youre copper deficient , Vitamin A is 3x higher in liver.... while being 3x lower in serum.... Is this a reason for continued night blindness post accutane?? or increased side effects when eating Vitamin A rich foods?? body senses lower retinol in blood which it will do anything to keep stable, tries to raise it quickly, but meanwhile, the liver is chocked full because it cant get rid of it?

http://apps.who.int/iris/bitstream/10665/133705/1/WHO_NMH_NHD_EPG_14.4_eng.pdf

Night blindness, a condition in which a person cannot see in dim light, is generally the earliest clinical manifestation of vitamin A deficiency and is both a sensitive and a specific indicator for low serum retinol levels (3, 4).

I found the liver biopsy article. DubyaB, can you explain this?
http://europepmc.org/abstract/MED/14978883

Received my test kit for gut flora/parasitology today, and I've noticed there is the option to get bile acids tested, which I'll probably go for as well.

The more I read about gut bacteria, the more I'm amazed at how much it's actually involved with so many key processes in the body. For example looking at bile acid;

• The liver synthesizes two primary bile acids, cholic acid and chenodeoxyclolic acid from cholesterol. The primary bile acids are converted to the secondary bile acids, deoxycolic acid and lithocholic acid by intestinal bacteria. A fraction of chenodeoxycholic acid is also transformed into the tertiary bile acid, ursodeoxycholic acid, in the liver. All bile acids secreted by the liver are conjugated with an amino acid, either with glycine or with taurine.

http://www.diazyme.com/websites/diazyme/images/products/pdf/MK035-TBA-Brochure-061715.pdf

It doesn't take much to see how an issue with bile acids could impact how well you absorb fat soluble vitamins, such as vitamin A;

• Bile acids are lipid-carriers and are able to solubilize many lipids by forming mixed micelles with fatty acids, cholesterol for the solubilization and absorption of fat-soluble vitamins such as vitamin E

I wouldn't be surprised if accutane has resulted in the bile acid synthesis to get stuck in some sort of vicious circle where our gut flora balance has been messed up, resulting in bile acids not being properly re-absored in the intestines, hence lowering the level of bile acids, so that in turn continues to affect gut flora balance and you go round and round. Knock-on effect is vitamin A etc isn't properly absorbed and so on, and there are a host of other symptoms as a result.

Correcting gut flora seems much more complex than just taking probiotics, you need to find out which strains look to be deficient etc, and treat accordingly.

On 2/11/2016 at 10:13 PM, Modeaa said:

 

''In a vicious cycle, P. acnes might stimulate TLR2 on sebocytes which further increase PI3K/Akt-mediated sebaceous lipogenesis. TLR2 and TLR4 are constitutively expressed on SZ95 sebocytes.¹⁵⁷ Interestingly, P. acnes exposure to hamster sebaceous glands has been shown to augment lipogenesis in vivo and in vitro.¹⁵⁸ This observation implicates that TLR2-mediated PI3K/Akt activation might not only be involved in the stimulation of inflammatory responses to P. acnes but also to P. acnes-triggered TLR2/PI3K/Akt-stimulated sebaceous lipogenesis. Downregulation of PI3K/Akt-mediated sebaceous lipogenesis by isotretinoin-induced upregulation of nuclear FoxOs would just impair lipogenesis and reduce the lipophilic follicular milieu for P. acnes overgrowth and P. acnes-mediated proinflammatory TLR2/PI3K/Akt/NFºB signal transduction.''

another option according to this foxo study is a stem cells damage but i don't understand if they mean if this depend on persistent foxo activation or just the dammage to the number of stem cells

''Moreover, the role of AR and FoxOs in sebocyte stem cell homeostasis has not been studied but may contribute to a prolonged downregulation of Wnt signaling in sebaceous stem cells. It is conceivable that an impairment of sebaceous stem cells would contribute to insufficient epidermal regeneration after epithelial injury. The clinical observation of impaired wound healing after systemic isotretinoin treatment might find here a plausible explanation. Thus, further studies with cultured sebocytes, human sebaceous glands and stem cells should address the possible FoxO1/AR and AR/²-catenin interaction in the presence or absence of isotretinion.''

Modeaa!!!!!!!!!

this paper almost describes the picture below exactly no?

http://www.ncbi.nlm.nih.gov/pubmed/16973122
"Exposure to Cu2+ or Zn2+ elicited the subcellular redistribution of an overexpressed FoxO1a-EGFP fusion protein from nucleus to cytoplasm,"
In summary, the PI3K/Akt pathway is activated in human hepatoma cells exposed to Cu2+ or Zn2+, resulting in the phosphorylation and subcellular relocalisation of transcription factor FoxO1a. Furthermore, copper is demonstrated to exert an insulin-mimetic effect also independently of the PI3K/Akt/FoxO pathway.

copper and zinc ions kick the upregulated FOX01 out of the nucleus , and back into the cytoplasm?

So accutane upregulates RAR-b--->which upregulates ATP7A--->which depletes intracellular & hepatic copper---> increasing retinol liver levels---> at the same time depleting  serum retinol levels--->keeping FOX01 upregulated in the nucleus.

so, lets switch the genes off by introducing Cu2+ and kick the FOX0 out.....

again, quoted from the paper above...."Exposure to Cu2+ or Zn2+ elicited the subcellular redistribution of an overexpressed FoxO1a-EGFP fusion protein from nucleus to cytoplasm,"

now look at the left picture.    

http://www.tandfonline.com/doi/pdf/10.4161/derm.15331

(ironically, probably same reason people get acne after eating chocolate(high in copper) and sugar of course promoting insulin.)

[Edited link out]
this guy explains that overexpressed  fox01 upregulates heme oxygenase-1 causing increased bilirubin levels.

my bilirubin still tests high to this day, 20 years later.   

then i find this......

http://www.ncbi.nlm.nih.gov/pubmed/15173392
Increased heme oxygenase-1 expression during copper deficiency in rats results from increased mitochondrial generation of hydrogen peroxide.

Abstract

i just dont know about copper. the deficiencies posted looked very minor and I dont know if doctors would call it a concern.
I look back at what was one of my first side effects being facial flushing, or inflammation, this goes hand and hand with the brain fog, lack of concentration,hyper excitability and maybe eventual hair loss? and maybe eventual ed?
Are we sure we are not hyper sensitive to allergens? dont think of allergies as runny nose, or sneezing itching eyes. I am talking about inflammation period. Ive met someone that said she has a hyper sensitive nose and its so bad their business was going to move into a older building, and she went in there. and it was either mold or something about the building that made her almost faint and feel very sick. Imagine if this to a minor degree was going on with us, with something as simple as dust.
Who can say for a fact they tested negative for allergies by either skin prick tests(most accurate) or blood test?

and I tested positive for every allergen even though im not sneezing or have a runny nose. but my face is constantly inflamed

4 minutes ago, guitarman01 said:

i just dont know about copper. the deficiencies posted looked very minor and I dont know if doctors would call it a concern.
I look back at what was one of my first side effects being facial flushing, or inflammation, this goes hand and hand with the brain fog, lack of concentration,hyper excitability and maybe eventual hair loss? and maybe eventual ed?
Are we sure we are not hyper sensitive to allergens? dont think of allergies as runny nose, or sneezing itching eyes. I am talking about inflammation period. Ive met someone that said she has a hyper sensitive nose and its so bad their business was going to move into a older building, and she went in there. and it was either mold or something about the building that made her almost faint and feel very sick. Imagine if this to a minor degree was going on with us, with something as simple as dust.
Who can say for a fact they tested negative for allergies by either skin prick tests(most accurate) or blood test?

and I tested positive for every allergen even though im not sneezing or have a runny nose.

Ive always thought this might be true. I notice my brain fog and general head stuffyness are worse when it's cloudy outside. My nose is always dry but stuffy. Ears feel a bit sticky when I swallow. ENT said I was fine other than a little redness. I tested positive for dust and pig weed allergies. Also when I ever in smoke weed I always get intense sinus pressure which could indicate a allergy. I never use to have this before. I constantly have chest restriction. I struggle to talk loudly. Ive been tested at the hospital twice and the results came back that I do have some sort of restriction. So I'm seeing arespirologist next Wednesday for further testing. I defiently think we have chronic inflammation issues.

31 minutes ago, Bobby.Digital said:

47 minutes ago, guitarman01 said:

i just dont know about copper. the deficiencies posted looked very minor and I dont know if doctors would call it a concern.
I look back at what was one of my first side effects being facial flushing, or inflammation, this goes hand and hand with the brain fog, lack of concentration,hyper excitability and maybe eventual hair loss? and maybe eventual ed?
        Are we sure we are not hyper sensitive to allergens?  dont think of allergies as runny nose, or sneezing itching eyes. I am talking about inflammation period.  Ive met someone that said she has a hyper sensitive nose and its so bad their business was going to move into a older building, and she went in there. and it was either mold or something about the building that made her almost faint and feel very sick. Imagine if this to a minor degree was going on with us, with something as simple as dust.
       Who can say for a fact they tested negative for allergies by either skin prick tests(most accurate) or blood test?

and I tested positive for every allergen even though im not sneezing or have a runny nose. 

Ive always thought this might be true. I notice my brain fog and general head stuffyness are worse when it's cloudy outside. My nose is always dry but stuffy. Ears feel a bit sticky when I swallow. ENT said I was fine other than a little redness. I tested positive for dust and pig weed allergies. Also when I ever in smoke weed I always get intense sinus pressure which could indicate a allergy. I never use to have this before. I constantly have chest restriction. I struggle to talk loudly. Ive been tested at the hospital twice and the results came back that I do have some sort of restriction. So I'm seeing a respirologist next Wednesday for further testing. I defiently think we have chronic inflammation issues. 

both of you sound exactly like classic Histamine intolerance cases.  get tested for Histamines!   heh it will help to confirm copper deficiency

http://www.foodsmatter.com/allergy_intolerance/histamine/articles/histamine_joneja.html

48 minutes ago, tryingtohelp2014 said:

both of you sound exactly like classic Histamine intolerance cases.  get tested for Histamines!   heh it will help to confirm copper deficiency

http://www.foodsmatter.com/allergy_intolerance/histamine/articles/histamine_joneja.html

im sorry man I know we like to hold on to that one thing. but for me, pretty sure its not copper. its got my feet feeling weird,memory problems stomach so bloated I could barely eat today, a little nauseous and other then that no positive effect to speak of. I know I over did it taking 8mgs the other day, but today I only took 2mgs and right back to feeling these same effects.
     I've come to the revelation that after all these years, what has had the most drastic effect on me is this nasal steroid called nasonex in particular because it seems to be maybe the strongest and least irritating. Weather this is treating the cause or effect I dont know yet. I have an allergist appointment wednesday and will get a script for singular as well and see how that goes. but let me tell you what nasonex does. increases oil production in my face due to less inflammation, is decreasing brain fog and negative mood, hair becomes healthier looking, acid reflux goes away, back pain goes away, eyes feel better, throat better more powerful (no shaky voice) i can tell when I sing. and more energy possibly due to sleep apnea from allergies?
    my most debilitating side recently has been dizziness so bad ive had to leave restaurants and pull off my job. This is worse in the winter I belive because of the dry air.  This dizziness i believed is caused by chronic inflammation and ear fullness or eustachian tube dysfunction. This is what im desperately trying to treat atm with Nasonex. and funny thing is when it comes to dizziness the one supplement that has stopped it when i messed with from time to time is guess what? Vitamin A

Does anyone here who has been off Accutane for many years look a lot younger than their years? I'm 41 years old and have been off Accutane for nearly 20 years, yet people always guess my age as somewhere between 27-29. Never any older. They are always amazed when I tell them my real age and never believe me until I show them my driver's license. I wonder if Accutane has a preserving effect on the face? With all the bad that it does, I'd at least like to think that it did some good!

19 minutes ago, Accutainted4ever said:

Does anyone here who has been off Accutane for many years look a lot younger than their years? I'm 41 years old and have been off Accutane for nearly 20 years, yet people always guess my age as somewhere between 27-29. Never any older. They are always amazed when I tell them my real age and never believe me until I show them my driver's license. I wonder if Accutane has a preserving effect on the face? With all the bad that it does, I'd at least like to think that it did some good!

yea i agree. for me it is due to not being able to put on any body fat, including my face, or muscle really, and my bones might have stopped growing prematurely. So thanks Accutane... are you preserving my hairline too?

2 hours ago, Accutainted4ever said:

Does anyone here who has been off Accutane for many years look a lot younger than their years? I'm 41 years old and have been off Accutane for nearly 20 years, yet people always guess my age as somewhere between 27-29. Never any older. They are always amazed when I tell them my real age and never believe me until I show them my driver's license. I wonder if Accutane has a preserving effect on the face? With all the bad that it does, I'd at least like to think that it did some good!

Im the say way. Although I've looked younger than my age my whole life.

How many of you guys are underweight? And struggle to put on any weight?

Im 5'8 and I only weigh 120 pounds. I've never been able to put on weight no matter what I do.

Currently on day 163 of isotretinoin. For anyone who is curious about starting a course, these are the side effects I have experienced to date (not all at the same time):

Extremely dry lips (requires warm water and vaseline)
Extremely dry eyes (difficult to keep my eyes open unless I use plenty of drops)
Nose bleeds in the morning
Severe eczema breakouts
Hair thinning
Flushing
Constipation (this one is horrible and is prevented by drinking lots of water)
Flank pain
Weird hallucinations (has happened three times... last night I thought the bed was covered with spiders)
Slight brain fog
Joint pains after running
Dry ears

Guys, a specialist in PFS is taking an interest in Accutane. I am trying to gather as much information as possible, he might be able to help.
I know quite a few of you guys have recovered somewhat - how can we collate all information, recovery times, level of recovery, zero recovery, libido issues and general excitement or feeling flat. What ifanything helped, does viagra work. Alcohol effects. A connection with pro/finasteride won't be good but one way or the other we needbetter understanding of this. Reasonable history of accutane is also important. Some guys have taken accutane alongside other drugs, namely finasteride - this should be mentioned. You are all so much more knowledgeable than me so I am relying on you to help out in anyway you can.

I have also found a neurologist who is concerned about the amount of Myopathy cases she is seeining in young men - some have reported taking accutane. She is very interested in what I have to say.. Does anyone have anything they want me to put forward.

Maybe we won't find someone who can address all the issues associated with accutane but if we can start breaking everything down and get some specialists to look at individual problems - you never know - there is always hope!

11 minutes ago, hatetane said:

I have also found a neurologist who is concerned about the amount of Myopathy cases she is seeining in young men - some have reported taking accutane. She is very interested in what I have to say.. Does anyone have anything they want me to put forward.

 

Tell the neurologist to check for ...wait for it.... copper deficiency.   have her check RBC.

Myelopathy[edit]

Copper deficiency myelopathy in humans was discovered and first described by Schleper and Stuerenburg in 2001. (Schleper B, Stuerenburg HJ. Copper deficiency-associated myelopathy in a 46-year-old woman. J Neurol. 2001 Aug; 248 (8): 705 - 6). They described a patient with a history of gastrectomy and partial colonic resection who presented with severe tetraparesis and painful paraesthesias and who was found on imaging to have dorsomedial cervical cord T2 hyperintensity. Upon further analysis, it was found that the patient had decreased levels of serum coeruloplasmin, serum copper, and CSF copper. The patient was treated with parenteral copper and the patient`s paraesthesias did resolve. Since this discovery, there has been heightened and increasing awareness of copper-deficiency myelopathy and its treatment, and this disorder has been reviewed by Kumar. Sufferers typically present difficulty walking (gait difficulty) caused by sensory ataxia (irregular muscle coordination) due to dorsal columndysfunction^[7] or degeneration of the spinal cord (myelopathy).^[2][9] Patients with ataxic gait have problems balancing and display an unstable wide walk. They often feel tremors in their torso, causing side way jerks and lunges.^[10]

In brain MRI, there is often an increased T2^{[disambiguation needed]} signalling at the posterior columns of the spinal cord in patients with myelopathy caused by copper deficiency.^[2][7][11] T2 signalling is often an indicator of some kind of neurodegeneration. There are some changes in the spinal cord MRI involving the thoracic cord, the cervical cord or sometimes both.^[2][7] Copper deficiency myelopathy is often compared to subacute combined degeneration (SCD).^[9] Subacute combined degeneration is also a degeneration of the spinal cord, but instead vitamin B12 deficiency is the cause of the spinal degeneration.^[2] SCD also has the same high T2 signalling intensities in the posterior column as copper deficient patient in MRI imaging.^[11]
 

Methylation Cycle[edit]

 

Myelinated neuron

Another hypothesis is that copper deficiency myelopathy is caused by disruptions in the methylation cycle.^[9] The methylation cycle causes a transfer of a methyl group (-CH3) from methyltetrahydrofolate to a range of macromolecules by the suspected copper dependent enzyme methionine synthase.^[9] This cycle is able to produce purines, which are a component of DNA nucleotide bases, and also myelin proteins.^[9] The spinal cord is surrounded by a layer of protective protein coating called myelin (see figure). When thismethionine synthase enzyme is disrupted, the methylation decreases and myelination of the spinal cord is impaired. This cycle ultimately causes myelopathy.^[9]

@tryingtohelp2014 Im going to head up to the doctors tomorrow and have a few copper related tests done, RBC etc.

Can you list a few more that you think may further ground your theory here on copper deficeincy?

Im happy to see post the results as Ive already had my hair test done and I suppose this would expose the other end of the spectrum as far as testing goes so to speak.

If you can do this within like 24hrs ish that would be good.

I could go back through this thread and look through your posts but I'm real tired, 4am night out etc.

1 hour ago, tryingtohelp2014 said:

Tell the neurologist to check for ...wait for it.... copper deficiency.   have her check RBC.

Myelopathy[edit]

Copper deficiency myelopathy in humans was discovered and first described by Schleper and Stuerenburg in 2001. (Schleper B, Stuerenburg HJ. Copper deficiency-associated myelopathy in a 46-year-old woman. J Neurol. 2001 Aug; 248 (8): 705 - 6). They described a patient with a history of gastrectomy and partial colonic resection who presented with severe tetraparesis and painful paraesthesias and who was found on imaging to have dorsomedial cervical cord T2 hyperintensity. Upon further analysis, it was found that the patient had decreased levels of serum coeruloplasmin, serum copper, and CSF copper. The patient was treated with parenteral copper and the patient`s paraesthesias did resolve. Since this discovery, there has been heightened and increasing awareness of copper-deficiency myelopathy and its treatment, and this disorder has been reviewed by Kumar. Sufferers typically present difficulty walking (gait difficulty) caused by sensory ataxia (irregular muscle coordination) due to dorsal columndysfunction^[7] or degeneration of the spinal cord (myelopathy).^[2][9] Patients with ataxic gait have problems balancing and display an unstable wide walk. They often feel tremors in their torso, causing side way jerks and lunges.^[10]

In brain MRI, there is often an increased T2^{[disambiguation needed]} signalling at the posterior columns of the spinal cord in patients with myelopathy caused by copper deficiency.^[2][7][11] T2 signalling is often an indicator of some kind of neurodegeneration. There are some changes in the spinal cord MRI involving the thoracic cord, the cervical cord or sometimes both.^[2][7] Copper deficiency myelopathy is often compared to subacute combined degeneration (SCD).^[9] Subacute combined degeneration is also a degeneration of the spinal cord, but instead vitamin B12 deficiency is the cause of the spinal degeneration.^[2] SCD also has the same high T2 signalling intensities in the posterior column as copper deficient patient in MRI imaging.^[11]
 

Methylation Cycle[edit]

 

Myelinated neuron

Another hypothesis is that copper deficiency myelopathy is caused by disruptions in the methylation cycle.^[9] The methylation cycle causes a transfer of a methyl group (-CH3) from methyltetrahydrofolate to a range of macromolecules by the suspected copper dependent enzyme methionine synthase.^[9] This cycle is able to produce purines, which are a component of DNA nucleotide bases, and also myelin proteins.^[9] The spinal cord is surrounded by a layer of protective protein coating called myelin (see figure). When thismethionine synthase enzyme is disrupted, the methylation decreases and myelination of the spinal cord is impaired. This cycle ultimately causes myelopathy.^[9]

Thanks for your contribution. I am still new to this forum - trying to recognise you all. Where are you from?
Not trying to step on your toes, I see you contribute a lot - good man!
Did you see what Dr Emerson had to say about Pyrole Disorder re propecia?
Are you convinced by Methylation? We all know about Ben Walsh but can you tell me anything about Dr Jessie Armine and Shaun Bean? Dr Jessie is coming to the UK in the next few days - just wondering if it's worth forking out £350 to see him. Worth it if it will help - you know anyone else who has improved their overall health with this.

I think I saw you say you recover ED - what is your history?
I don't see many talking about Myopathy but I I personally know 7 people who took acctane. The three women I don't believe were particularly aware of ant problems but all 4 men noticed it big time and report intolerance to exercise. Must say all four guys high functioning - see what Dr Emerson has to say about this. 
We have a group of 13 who are all collaborating - we got some catching up to do but looking forward to  moving forward.
 
 

1 hour ago, hatetane said:

Guys, a specialist in PFS is taking an interest in Accutane. I am trying to gather as much information as possible, he might be able to help.
I know quite a few of you guys have recovered somewhat - how can we collate all information, recovery times, level of recovery, zero recovery, libido issues and general excitement or feeling flat. What if anything helped, does viagra work. Alcohol effects.  A connection with pro/finasteride won't be good but one way or the other we need better understanding of this. Reasonable history of accutane is also important. Some guys have taken accutane alongside other drugs, namely finasteride - this should be mentioned. You are all so much more knowledgeable than me so I am relying on you to help out in anyway you can.

I have also found a neurologist who is concerned about the amount of Myopathy cases she is seeining in young men - some have reported taking accutane. She is very interested in what I have to say.. Does anyone have anything they want me to put forward.

Maybe we won't find someone who can address all the issues associated with accutane but if we can start breaking everything down and get some specialists to look at individual problems - you never know - there is always hope! 
 

2 hours ago, hatetane said:

Guys, a specialist in PFS is taking an interest in Accutane. I am trying to gather as much information as possible, he might be able to help.
I know quite a few of you guys have recovered somewhat - how can we collate all information, recovery times, level of recovery, zero recovery, libido issues and general excitement or feeling flat. What ifanything helped, does viagra work. Alcohol effects. A connection with pro/finasteride won't be good but one way or the other we needbetter understanding of this. Reasonable history of accutane is also important. Some guys have taken accutane alongside other drugs, namely finasteride - this should be mentioned. You are all so much more knowledgeable than me so I am relying on you to help out in anyway you can.

I have also found a neurologist who is concerned about the amount of Myopathy cases she is seeining in young men - some have reported taking accutane. She is very interested in what I have to say.. Does anyone have anything they want me to put forward.

Maybe we won't find someone who can address all the issues associated with accutane but if we can start breaking everything down and get some specialists to look at individual problems - you never know - there is always hope!

Thanks for sharing this. Many of the PFS doctors have high credibility in the medical community and it would be great if one or more of them began speaking out on behalf of those of us with sexual side effects and depression from Accutane.

Even the neurologist coming forward about muscle wasting among former Accutane users would be a great stride.

I will PM you some information. Hope it helps.

4 hours ago, hatetane said:

I don't see many talking about Myopathy but I I personally know 7 people who took acctane. The three women I don't believe were particularly aware of ant problems but all 4 men noticed it big time and report intolerance to exercise. Must say all four guys high functioning - see what Dr Emerson has to say about this.
We have a group of 13 who are all collaborating - we got some catching up to do but looking forward to moving forward.

Interesting....This would make sense as well. Women menstruate and get rid of excess Iron monthly. Men dont. High iron has an antagonism with copper. Ive read several studies that say the relapse rate and needed 2nd course of accutane, is much higher in women than men. Would be interesting to see if that correlated with what the neurologist sees with myelopathy percentages.

"Since most people know about the importance of zinc, commercial food manufacturers use this to increase sales almost all processed food products in the U.S. are generously fortified with zinc and iron. In addition, all vitamin/mineral complexes contain zinc and iron. As a result, people who consume large portion of their ration in a form of processed foods and regularly take vitamin/mineral supplements may get too much iron and zinc and put themselves at risk of copper deficiency."

http://m.brain.oxfordjournals.org/content/130/8/2045.short

ETFDHmutations as a major cause of riboflavin-responsive multiple acyl-CoA dehydrogenation deficiency