2 hours ago, tanedout said:

Our treatment protocol includes an oral targeted lipid therapy (targeted phospholipid based dietary therapy) and in some cases an intravenous infusion of phenylbutyrate, phosphatidylcholine, leucovorin, and glutathione to clear bioaccumulation of toxins impacting gene expression and stabilize cellular architecture. We have documented significant clinical neurological improvement in our patients, including cessation of seizures, along with marked normalization of cellular function (via laboratory analysis) following six months of an oral and intravenous lipid regime.

Right here, I underlined it.

Phospholipid composition of liver in rats fed high levels of 13-cis retinoic acid.

2 hours ago, Colinboko said:

To be completely honest what I plan to do is set up an appointment with my ENT complaining about my voice loss/weakness... hopefully get prescribed prednisone for the inflammation (if visible). Try it out.. and if I feel better I'm going directly back to my GP who I've complained to heavily about chronic fatigue and tell him that prednisone made me feel EXTREMELY better. I'm not going to mention accutane anymore and I don't think anyone should. Once we find the best way out of this mess should we then blame accutane. But for right now it is only going to make doctor's scratch their heads and deem us as crazy.

This could definitely be another clue or something in common. If you got the money/insurance to have a lpr scope done and it shows inflammation, we got that in common. He might say acid reflux and push ppis or even flonase before you get steroids. Ive been to a ton of ents over the years, never offered steroids. but maybe if you complained of sinus issues too. This still might be a 4th option though in their mind, after ppi, nasal steroid,antibiotics and then oral steroid.
You might have better luck just going to a walk in clinic. one time they told me,( was complaining of sinus issues) I can either give you antibiotics or a oral steroid which one do you want?

or you could go the online route if these ^ dont work

37 minutes ago, guitarman01 said:

Right here, I underlined it.

Phospholipid composition of liver in rats fed high levels of 13-cis retinoic acid.

Alam BS,Alam SQ.

Abstract

The composition of liver phospholipids was studied in rats fed for 4 weeks diets containing 0, 100 or 300 mg 13-cis retinoic acid per kg diet. There was a significant decrease in phosphatidylcholine content, whereas the levels of phosphatidylethanolamine were slightly increased in liver phospholipids of rats fed 13-cis retinoic acid. The fatty acid composition of total phospholipids, PC, PE, and P1 + PS fractions revealed a general increase in the levels of 18:2 and 20:3 omega 6, whereas the levels of 20:4 omega 6 and C22 fatty acids were reduced in most of the hepatic phospholipids isolated from rats fed 13-cis retinoic acid containing diets. A decrease in the double-bond index of fatty acids was also observed in phospholipids of rats fed 13-cis retinoic acid. The data suggest that high levels of 13-cis retinoic acid may possibly be influencing the activities of microsomal desaturating and chain-elongating enzymes in the liver.

This could definitely be another clue or something in common. If you got the money/insurance to have a lpr scope done and it shows inflammation, we got that in common. He might say acid reflux and push ppis or even flonase before you get steroids. Ive been to a ton of ents over the years, never offered steroids. but maybe if you complained of sinus issues too. This still might be a 4th option though in their mind, after ppi, nasal steroid,antibiotics and then oral steroid.
You might have better luck just going to a walk in clinic. one time they told me,( was complaining of sinus issues) I can either give you antibiotics or a oral steroid which one do you want?

or you could go the online route if these ^ dont work

The thing with me is that I am a singer. And when I say that I don't mean your typical shower singer or band singer. I am a working professional actor and have toured all over doing musical theater so my ENT knows that my voice is my LIFE. It's funny too because in the beginning I didn't really have voice loss. It just started getting really bad about a month or two ago when I started to feel really fatigued.

3 hours ago, Colinboko said:

To be completely honest what I plan to do is set up an appointment with my ENT complaining about my voice loss/weakness... hopefully get prescribed prednisone for the inflammation (if visible). Try it out.. and if I feel better I'm going directly back to my GP who I've complained to heavily about chronic fatigue and tell him that prednisone made me feel EXTREMELY better. I'm not going to mention accutane anymore and I don't think anyone should. Once we find the best way out of this mess should we then blame accutane. But for right now it is only going to make doctor's scratch their heads and deem us as crazy.

Good luck to you Colinboko. Hope you feel better! xx

Looking at b12 again. anyone tried up to 5000mcg cheap b12 you can get from a drugstore?
Can Accutane modulateb12 expression?

Cobalamin coenzyme forms are not likely to be superior to cyano- and hydroxyl-cobalamin in prevention or treatment of cobalamin deficiency.

Human and animal data indicate that both B₆and B₁₂play a critical role in nucleotide synthesis and subsequent cell growth. Therefore, insufficient levels of B₆and B₁₂would inhibit the immune system's ability to respond to pathogenic challenge.

im probably going to get a b6 blood test to rule this out as well.

8 minutes ago, guitarman01 said:

Human and animal data indicate that both B₆and B₁₂play a critical role in nucleotide synthesis and subsequent cell growth. Therefore, insufficient levels of B₆and B₁₂would inhibit the immune system's ability to respond to pathogenic challenge.

im probably going to get a b6 blood test to rule this out as well.

Is it insufficient levels we should look at or instead the body's inability to absorb it that we should be concerned with?

I ask this as I came to the realisation last year that blood tests just aren't conclusive with us victims, everything points to either being in Range or low at best.

Thats why I bang on a lot about gut health, if that's all fucked up after tane then maybe the transportation and absorption of Vit & Min is altered??

I dunno- just throwing it out there. Regardless I'm about to get some more blood tests done mainly for cholesterol but I've given up trying to find anything conclusive with just mainstream routine blood testing!

33 minutes ago, TrueJustice said:

I've given up trying to find anything conclusive with just mainstream routine blood testing!

yea, I hear you. Id just be curious what peoples average b12 levels were before and after tane. lets say mine used to be in the 1000s before accutane now its in the 500s. just hypothetical.

with the gut thing, alot of people seem to have throat irritation going on and i just wonder if there is too much or too little stomach acid being generated post tane. To give a example one person told me he started taking betaine hcl and his sinus problems got better. there are further tests to investigate this including ph monitoring. but it would just be cheaper easier to double dose ppis or trial betaine, but depending on the cause of reflux/gastritis betaine hcl (not tmg) could be a bad idea. Or maybe food is just not moving through the gi tract fast enough, hence all the bloating alot of people complain about.

unfortunately instead of a gi doctor investigating a cause, they will just put you on a laxative, ppi and motility agent and be done with you.
Speaking of motility agent I think they might actually use LDN in some cases.

8 hours ago, TrueJustice said:

Is it insufficient levels we should look at or instead the body's inability to absorb it that we should be concerned with?

I ask this as I came to the realisation last year that blood tests just aren't conclusive with us victims, everything points to either being in Range or low at best.

Thats why I bang on a lot about gut health, if that's all fucked up after tane then maybe the transportation and absorption of Vit & Min is altered??

I dunno- just throwing it out there. Regardless I'm about to get some more blood tests done mainly for cholesterol but I've given up trying to find anything conclusive with just mainstream routine blood testing!

We know that all we are in stress mode and because of that we can rapidly lose vitamin B 6 B12 and others, but i have to agree that gut may have been a crucial cause of "bad metabolism" ,yet  we don't know which came first the chicken or the egg.
PS: My current therapy is just to be relax, cherish love with my 2year girlfriend,  tried to be happy in small things, be gratefully, and be faith with GOD.
 

It's a pleasure to help all of you.

I discovered this treatment thanks to a "friend", he has been in different clinics in all the world trying to solve a mysterious problem that kept him in at bed for 20 hours a day.

It seemed to have CFS, but even the gut and the hormones weren't working properly.
He found this special treatment while he was in a  London's hospital doing stool transplantation. 

He was advised by a nurse that worked there at the hospital.
So he tried to do protocol PK and he was able to finally heal all his problem. Great improvements after 3 days of treatment and a complete healing after a few months with oral therapy.

1 hour ago, Riondaz said:

He was advised by a nurse that worked there at the hospital.
So he tried to do protocol PK and he was able to finally heal all his problem. Great improvements after 3 days of treatment and a complete healing after a few months with oral therapy

Do you know specifically what was involved in this treatment? I.e. exactly what supplements he took, were these administered orally or via IV for example? I read the link you posted above about the protocol but the details are vague with regards to the actual methods.

On 5/5/2017 at 10:59 PM, tanedout said:

Do you know specifically what was involved in this treatment? I.e. exactly what supplements he took, were these administered orally or via IV for example? I read the link you posted above about the protocol but the details are vague with regards to the actual methods.

The main oral supplement is Body Bio PC, that is liquid phosphatidylcholine.

The treatment is based always on phosphatidylcholine but it's much more effective via IV..

[Edited link out]

just had all these tests to check this thoroughly one last time.

TSH

Free T4

Free T3

Reverse T3

Thyroid Peroxidase Antibodies

Thyroglobulin Antibodies

Going to have this amino acid blood test I mentioned on Monday.

Test ID: AAQP    
Amino Acids, Quantitative, Plasma

Thanks Riondaz - I really appreciate what you've outlayed.

Isn't it typical that a Nurse offered you this info, how many times I've heard that from people in hospital I couldn't tell you!!

These fucking useless doctors - don't get me started....anyway I'm going to lookinto it in Australia, see what's available.

Just curious, you've listed your main side effects but did you have systemic dryness and any light sensitivity going on - that sort of thing??

7 hours ago, TrueJustice said:

Thanks Riondaz - I really appreciate what you've outlayed.

Isn't it typical that a Nurse offered you this info, how many times I've heard that from people in hospital I couldn't tell you!!

These fucking useless doctors - don't get me started....anyway I'm going to lookinto it in Australia, see what's available.

Just curious, you've listed your main side effects but did you have systemic dryness and any light sensitivity going on - that sort of thing??

Yes.. dry skin, dry scalpbut with a lot of sebum and light sensitivity.

Decreased plasma folate concentration in young and elderly healthy subjects after a short-term supplementation with isotretinoin.

4 hours ago, guitarman01 said:

Decreased plasma folate concentration in young and elderly healthy subjects after a short-term supplementation with isotretinoin.

Chanson A¹,Cardinault N,Rock E,Martin JF,Souteyrand P,D'Incan M,Brachet P.

Author information

Abstract

BACKGROUND:

In the last two decades, there has been an increasing use of isotretinoin (13-cis-retinoic acid or 13-CRA) for treatment of severe, and recently mild and moderate, acne in Westernized populations. Recent human and animal studies emphasized alterations caused by 13-CRA administration on folate-dependent, one-carbon metabolism. Folate deficiency and subsequent hyperhomocysteinemia increase the risk of degenerative diseases.

OBJECTIVES:

We determine whether a short-term supplementation with 13-CRA alters folate status and homocysteinemia in young and elderly healthy human subjects.

METHODS:

Twenty young and 20 elderly (age mean, 26.1 and 65.4 years, respectively) healthy male volunteers were supplemented with approximately 0.5 mg/kg/day of 13-CRA for 28 days. Fasting plasma concentrations of 13-CRA, 5-methyltetrahydrofolate (5-mTHF) as the main circulating form of folate, and homocysteine (Hcy), as well as haematologic parameters and biochemical markers of liver and renal function, were measured at baseline and at the end of supplementation. Statistical analyses were carried out using two-way anova and standard tests.

RESULTS:

In both groups, isotretinoin supplementation caused a dramatic increase in the circulating concentration of 13-CRA and its derivatives. It also led to significant increases in serum triglyceride (P < 0.0001) and creatinine (P = 0.002) concentrations and gamma-glutamyltranspeptidase activity (P = 0.0001) and decrease in serum level of urea (P = 0.027). However, the latter four parameters remained within normal ranges. These changes were accompanied by a 17.7% and 13.5% decrease in the plasma level of 5-mTHF (P = 0.001) in the young and elderly volunteers, respectively. Supplementation with 13-CRA did not cause significant variations in their plasma Hcy concentration. However, the latter parameter seemed to respond differently in each group of age (P = 0.046).

CONCLUSIONS:

Our data indicate that a 28-day supplementation with isotretinoin alters the plasma folate in young and old healthy individuals. This stresses the necessity of studying the long-term effects of retinoid therapy on folate status and homocysteinemia in acne patients, given that alteration in the latter parameters is known to increase the risk of degenerative diseases.

Im going to get this test as well

Test ID: F5M
5-Methyltetrahydrofolate

http://www.mayomedicallaboratories.com/test-catalog/Overview/57101

So what was the results of your recent labs

23 hours ago, oli girl said:

So what was the  results of  your recent labs

Still waiting on the results of the full thyroid panel I just posted. Other then that nothing abnormal in any labs ive had since the early 2000s.
MRI was abnormal. Cerebral atrophy, loss of brain volume and thinning of the corpus callosum, all categorized as mild. So thats why im still pursuing other labs and doctors opinions to maybe catch anything going on here if possible. At least with ^ actually showing something, I might be able to phone in any type of blood test I can think of and have it granted by my doctor to fully investigate this. Probably going to look into getting this blood test as well mario mentioned to check liver function. Might be barking up the wrong trees, buts its good to rule things out.
Also going to look into histamine test/ some sort  of mast cell activation disorder.

Ive mentioned this before but something as simple as untreated severe allergies, similar to a chronic inflammation, after a while can cause low grade brain inflammation, that if left untreated could maybe eventually start to affect the brain.
 

Test ID: BAFS    
Bile Acids, Fractionated and Total, Serum

Wilson disease (WD) is an autosomal recessive disorder that results from the body's inability to excrete excess copper. Typically, the liver releases excess copper into the bile. Individuals with WD lack the necessary enzyme that facilitates clearance of copper from the liver to bile. As a result, copper accumulates first in the liver and gradually in other organs. The brain, kidneys, bones, and corneas can also be affected. WD affects approximately 1 in 30,000 people worldwide, with a carrier frequency of approximately 1 in 90 individuals.

1 in 90 is a pretty possible number in alot of us. This combined with accutane and multiple studies ive posted showing retinoids could possibly cause oxidative damage via copper could be quite the combination.

Other treatments for Wilson disease include the following:

• Anticholinergics, baclofen, GABA antagonists, and levodopa to treat parkinsonism and dystonia
• Antiepileptics to treat seizures
• Neuroleptics to treat psychiatric symptoms
• Protein restriction, lactulose, or both to treat hepatic encephalopathy

Remember when I said some of this sounded like parkinson's with the abnormal muscle twitching people have reported?
you could maybe look into some of these treatments for relief and possible clues.

Just off the top of my head thats otc and safe Claritin(has anticholinergic properties)
Ginko Biloba GABA antagonist.

Again this is a mechanism for what could happen fast and some people slowly recover or dont fully recover. Or get worse.
Preferencing, just a theory at this point.

Hey Guys,

I hope you find this interesting, please share if you think it's worth doing so (includes hypotheses that may be relevant to Post-Accutane Syndrome) :

[removed]

@guitarman01Congrats on your work.

@mariovitaliThanks for sharing and putting in the time and effort to compile this info, I'll have a good read through tonight!

10 hours ago, mariovitali said:

Hey Guys,

I hope you find this interesting, please share if you think it's worth doing so (includes hypotheses that may be relevant to Post-Accutane Syndrome) :

http://algogenomics.blogspot.com/2017/05/machine-learning-nlp-and-network.html

@guitarman01Congrats on your work.

why are some of the circles blurred in your picture?

26 minutes ago, tryingtohelp2014 said:

10 hours ago, mariovitali said:

Hey Guys,

I hope you find this interesting, please share if you think it's worth doing so (includes hypotheses that may be relevant to Post-Accutane Syndrome) :

http://algogenomics.blogspot.com/2017/05/machine-learning-nlp-and-network.html

@guitarman01Congrats on your work.

why are some of the circles blurred in your picture?

The most central node is the one to the left of node lxr (=Liver X Receptor).

I have reasons to believe that the implications of this Research are going far beyond the Syndromes discussed. Since the research is not over, i would rather have experts evaluate the validity of these hidden nodes being where they are, rather than presenting information that should not be there in the first place.

40 minutes ago, mariovitali said:

The most central node is the one to the left of node lxr (=Liver X Receptor).

I have reasons to believe that the implications of this Research are going far beyond the Syndromes discussed. Since the research is not over, i would rather have experts evaluate the validity of these hidden nodes being where they are, rather than presenting information that should not be there in the first place.

i believe this will be the future standard for all disease in a few years. computeralgos will solve basically everything.

I commend you on your work. but ipersonallywouldnt omit anything. you could always revise it later? every little piece of the puzzle matters...and something you omit could be the piece of information somebody out there needs.

I am wondering if anyone can chime in with information regarding the clinical trials conducted on Accutane. Now, information on the clinical trials seems hard to find because Accutane was approved on the basis of research done (and selectively published) by Roche themselves. The FDA only evaluated the research. I don't even think the FDA had access to the raw data of the initial studies.

On 5/10/2017 at 3:31 AM, ACCUiTy_drANE said:

I am wondering if anyone can chime in with information regarding the clinical trials conducted on Accutane. Now, information on the clinical trials seems hard to find because Accutane was approved on the basis of research done (and selectively published) by Roche themselves. The FDA only evaluated the research. I don't even think the FDA had access to the raw data of the initial studies.

The recent New Jersey lawsuit found that Roche was withholding patient memos and internal studies that found Accutane erodes the intestinal tract. The studies remain sealed, but the information ABOUT the studies and memos are now public, thanks to news outlets reporting on the trials. So we now know the previously concealed studies exist, which is better than nothing. (And this is why people who rally against "sue-happy" people have no idea what they're talking about.)

So that begs the question: What else was concealed by Roche? Does anyone know of any litigation against Roche that mentioned clinical trials related to the psychiatric side effects? I have read through the depression-related court cases in the early 2000s (kickstarted by Congressman Stupak). Lots of interesting studies were mentioned, but not much about clinical trials. Really, I am looking for ANY court case transcripts against Roche post-2000-2001, including the New Jersey one. Alternatively, can someone help me obtain the transcripts? Thank you. A public post, private message, or email will suffice, as I am starting to realize people prefer to discuss these matters privately. [Edited link out]

If you get or find anything that I can forward to the review please send it to me ASAP.

Anyone can send their story/journey/history with any relevant research documents to the accutane review that is coming up in June.
You don't need to be a European!! Please make an effort to do this.

I can send a group email address of all attendees of the meeting to anyone who sends me a PM - or you will find the list in my posts.

ACTION IS NEEDED AND WE HAVE AN OPPORTUNITY HERE.

Has anyone already sent their story or their protest and utter disgust at being given this drug without warning about the real, long lasting/permanent and unlisted side effects?