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24 minutes ago, Gladiatoro said:Any honest derm will tell you long term side effects of this chemotherapy agent are joint pain and depression and thats if your lucky . But I would describe it as reduced brain function , MRIs prove it , its a fact .
It's heart breaking kids are put on this they truly have no idea of what they are getting into and the life long effects. Being chronically dehydrated is NOT healthy .
Dude, chill.
I dont have POTS. Took the tilt table test. (this is separate though from muscle ph controlling cerebral blood flow as seen in CFS, but the two can be in common.) Im close to Tachycardia, which is a fast heart rate. The doctor I saw at the university actually took Accutane in her 20s. Obviously it didnt have a big impact on her, as she's gone on to be highly successful. She was aware of Accutane being a serious drug and acknowledged possible side effects. She was going to look into it and some information I left her, but we will see. She was older. she wasnt aware or up to date on some things I talked to her about. For instance k2. she didnt seem to have much knowledge of it.
Anyways moving on for now. All of this is related.
youve seen insulin associated with accutane. dysregulation of lipids.
This is bone health predicting testosterone level
Total osteocalcin in serum predicts testosterone level in male type 2 diabetes mellitus
Conclusion: In male patients with T2DM, total OC was positively correlated with testosterone, so total OC might predict the testosterone level in the serum.
This is bone health influencing markers of low grade inflammation.
This is looking at early signs of metabolic syndrome.
decreased level of Gla-OC seems to be associated with the appearance of early markers of low grade inflammation
http://onlinelibrary.wiley.com/doi/10.1002/dmrr.2862/full
gla-oc =Carboxylated osteocalcin
This is showing in 2017 just published this month, they still dont know about this.
Fecal concentrations of bacterially derived vitamin K forms are associated with gut microbiota composition
https://www.ncbi.nlm.nih.gov/pubmed/28814395
2017 Oct;
Background: Emerging evidence suggests novel roles for bacterially derived vitamin K forms known as menaquinones in health and disease,
Conclusion: Menaquinone concentrations in the human gut appear highly variable and are associated with gut microbiota composition. However, the health implications remain unclear.
This is showing menaquinone deficiency in gut/colon could be possible cause for IBS. Sibo is highly linked to IBS. This should be tested to rule this out. Even minus SIBO, this might still be possible as a cause for IBS.
This is showing me dysregulation or dysbiosis from possible menaquinone deficiency.
Subclinical atherosclerosis is linked to small intestinal bacterial overgrowthviavitamin K2-dependent mechanisms
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323449/
^you see how recent this is? 2017.
If some of this ends up being right, This k2 market might be set to explode. for example they are releasing a new type of k2 supplement that contains multiple long chain menaquinones. 6,7,8, and 9. 8 is the menaquinone produced by p.acnes bacteria. meaning its found on the skin.
https://www.nutraingredients-usa.com/Article/2017/09/22/NattoPharma-debuts-full-spectrum-form-of-vitamin-K2-to-mimic-what-s-found-in-cheese#
On 10/2/2017 at 5:12 PM, Colinboko said:High protein levels in my urine...
was just contacted. Will keep y'all updated with info as I get it
That's what I was afraid of....sorry to hear
just reading the forums now
on my side of things
the dexamethasone thing showed abnormalities
so I need to do injections now to see
maybe adrenal issues
20 hours ago, mariovitali said:Will you be taking a Fibroscan test by any chance?
Yeah im open to it. I already know I have a fatty liver after the ultrasound ( now had 2 done )
What are we hoping to find though with fibroscan?
And importantly what would you be put on for any liver issues??Can I just assume nothing's stronger than Tudca? Which begs the question why do any liver testing, it's not like they offered me some astonishing drug after fatty liver diagnosis, all anyone will offer is clean up your diet.
All my GP said is get fitter, eat less crap food etc etc - all just commonsense stuff I guess but no real solution for someone accutained!!!
8 hours ago, Nemesisbrady said:That's what I was afraid of....sorry to hear
just reading the forums nowon my side of things
the dexamethasone thing showed abnormalities
so I need to do injections now to seemaybe adrenal issues
I actually wasn't sorry to hear this, to be honest. Cause the worse this gets, there could be some serious kidney damage going on. Which they have to treat...
Once again, I'm thinking low grade inflammation
So here is yet one more Guy who started with PFS and ended up with CFS. Please see the attached dialog where he says to me that he went "low carb" and it was then that he crashed.
I ask him whether his was on Whey Protein (i had always problem with it) and he replied that he was taking Whey Protein for 10 years (...!)
And now let's see this from a BodyBuilding forum:
QuoteAround Dec 15th last year I left home (so couldn't work out) but continued with the whey protein (around 50gms to sometimes 75gms per day). Earlier I used to take ON Whey but at home I used Myofusion. Around Dec 30 I had a full body check up. They told me that my AST and SGOT levels were way too high (AST was above 300, must have been below 40). The doc told me to stop Whey protein.
So I stopped taking Whey and started working out around Jan 10th when I came back and also did another check around Jan 15th. This time the levels had gone back to normal.
So does this mean I can't take Whey again, or taking isolates may help, or was Myofusion the culprit? Anybody has had similar problems?
Thanks.
https://forum.bodybuilding.com/showthread.php?t=122053501
and more :
QuoteCholestatic liver injury associated with whey protein and creatine supplements.
Abstract
We present a case of acute cholestatic liver injury associated with the combination of whey protein and creatine supplements. The difficulty of diagnosing drug-induced liver injury is emphasized. The patient is a healthy, 27-year-old man who presented with painless jaundice. He had no occupational exposures to solvents, was not taking prescription medications, and did not use recreational drugs or alcohol. He was an enthusiastic weight-lifter and had been taking creatine for 8 to 9 months and whey protein supplements for 4 weeks prior to the development of symptoms. Laboratory tests revealed elevated total bilirubin (54.7 mg/dL) and alkaline phosphatase (436 U/L), minimally elevated transaminases, and a creatinine of 3.1 mg/dL. Serologic work-up was negative for viral hepatitis and autoimmune liver disease, and Wilson's disease was ruled out. Magnetic resonance cholangiopancreatogram was unremarkable, but a liver biopsy showed marked cholestasis with ductular proliferation
https://www.ncbi.nlm.nih.gov/pubmed/18452122
And now the dialog :
If you find you have Liver fibrosis then Doctors will take you seriously as Fibrosis is something that needs to be stopped ASAP.
Also, please note that all people that were found with Liver fibrosis (6 out of 7 so far) had normal Liver enzymes.
1 hour ago, mariovitali said:@TrueJusticeIf you find you have Liver fibrosis then Doctors will take you seriously as Fibrosis is something that needs to be stopped ASAP.
Also, please note that all people that were found with Liver fibrosis (6 out of 7 so far) had normal Liver enzymes.
Mario, what treatments have they been put on, or lifestyle changes advised by doctors?
I'm assuming at a minimum removing things from diet such as alcohol, sugar, processed foods, saturated fats etc - but any medications? UDCA?
@TrueJusticeThis website has some good information on various liver conditions and treatments (clearly it's out to sell supplements, but regardless it's still clear and informative) http://www.liversupport.com
For fatty liver the treatments are essentially diet, antioxidants. It's worth taking note as it's only 2 steps away from cirrhosis, and the next stage to that is basically liver failure, so it's worth doing what you can to address it.
13 hours ago, mariovitali said:@TrueJustice @guitarman01So here is yet one more Guy who started with PFS and ended up with CFS. Please see the attached dialog where he says to me that he went "low carb" and it was then that he crashed.
I ask him whether his was on Whey Protein (i had always problem with it) and he replied that he was taking Whey Protein for 10 years (...!)
And now let's see this from a BodyBuilding forum:
https://forum.bodybuilding.com/showthread.php?t=122053501and more :
https://www.ncbi.nlm.nih.gov/pubmed/18452122And now the dialog :
If you find you have Liver fibrosis then Doctors will take you seriously as Fibrosis is something that needs to be stopped ASAP.
Also, please note that all people that were found with Liver fibrosis (6 out of 7 so far) had normal Liver enzymes.
Was on whey when i took accutane.
if i take whey right now my finger tops begin to shed skin, so havent take in some years.
like an excema reaction
17 hours ago, mariovitali said:@TrueJustice @guitarman01So here is yet one more Guy who started with PFS and ended up with CFS. Please see the attached dialog where he says to me that he went "low carb" and it was then that he crashed.
I ask him whether his was on Whey Protein (i had always problem with it) and he replied that he was taking Whey Protein for 10 years (...!)
And now let's see this from a BodyBuilding forum:
https://forum.bodybuilding.com/showthread.php?t=122053501and more :
https://www.ncbi.nlm.nih.gov/pubmed/18452122And now the dialog :
If you find you have Liver fibrosis then Doctors will take you seriously as Fibrosis is something that needs to be stopped ASAP.
Also, please note that all people that were found with Liver fibrosis (6 out of 7 so far) had normal Liver enzymes.
Can I ask, did those with Liver fibrosis also have a fatty liver??
On another note, I watched a report the other day on how well Vit D helps with asthma. I know some of us have experienced breathing issues post tane, I also know that the jury's still out on whether our Vit A levels are screwed post tane, assuming they are it stands to reason that both Vit D & E are also messed up yeah!!?
For me this light sensitivity speaks more about screwed up vitamin levels over anything liver related....happy to be proven wrong here, I mean it could be hormonal? I guess it is possible to have multiple problems post tane, not a day goes by without something new being sprung apon us ( see Colinboko's post above ) that's new isn't it?
So by all means let's continue to look at liver but as I've said before, it prob won't stop and end there unfortunately....
After all we've been through, all we've read so far and gathered, to name just a few things - it sounds to me like it's possible to have a fucked up liver, brain damage, fucked up sebaceous glands and CFS all at the same time...
VERY interesting theory here from a guy called Gbol who used to post on Ray Peat (they've deleted the thread on there, so the guys have setup this new forum. This is what has inspired some of the guys to try RU486, and that sounds promising. Worth a look, especially for people who understand the biochemical stuff quite well!..
QuoteFor the past few months, the user gbolduev has been discussing his theory on PFS over at the Ray Peat forum. Due to issues with moderation we thought itad be best if the discussion was moved over here. This theory might also apply to other syndromes such as PSSD and post-Accutane, so stay tuned if you suffer from those.
Gbolduev has stated that drugs like finasteride act as a progestin in the body; meaning, they bind to progesterone receptors. This has many downstream effects, most notably on 3BHSD and many other enzymes (5ar), hormones (estradiol, cortisol, DHT), and minerals (potassium). Eventually, the body gets thrown into a chronic state of imbalance from which it is hard to recover.
QuoteIf you have bad gut from propecia it is better to take active Bs, and do enemas with probiotics. Don't take them thru the mouth.
Same thing with accutane people. Accutane is an active vitamin A, it is retinoic acid. it bypasses all the regulations in retinoid pathway. Now go and see what is in retinoic pathway, ZINC takes retinol and converts to retinal, then you need NAD then you need aldehyde enzymes to convert it further down to retinoic acid. Accutane bypasses all of this. This tanks your Zinc, NAD, b2, molybdenum, Magnesium, B6. Same exact things needed for 3 beta HSD. Retinoic acid is what produces Progesterone.
Acne will be cleared with an active retinoic acid. To make that acid in your body, you dont take ACCUTANE. You take Zinc, NAD, B6, Magnesium and then Manganese molybdenum and b2. that is all.Never take end of the pathway products, they will kill all the minerals and cofactors in the pathway. If you see some claim that some product cures something. Just look at the pathway and feed the pathway.
You see claim Accutane cures acne. Boom, you just open retinoic metabolism and feed the cofactors from the beginning. Zinc, then NAD, then B6 then molybdenum and b2
[Edited link out]
[Edited link out]
This is crazy, so much of what this guy says makes so much sense! Backs up theories others have had (like 2 types of PFS, which appears to be the case), but he even suggests this - which explains how the No-Fap guys are essentially in the same mess as us, and why they have the same sort of sides;
QuoteAlso you can get propecia symptoms from excessive masturbation. When you do that your zinc levels are kept low for while and your 3 beta HSD( zinc dependant and NAD) is low for a while. This upregulates your progesterone receptors almost identical to propecia and you crash with POIS syndrome.
This is definitely some of the most significant stuff I've ever read in terms of Accutane, Finasteride sides - need the guys who have a understanding of biochemistry to have a read through all this - @ACCUiTy_drANE@tryingtohelp2014@guitarman01 etc!
We seriously need to stop using the term "brain damage".... Especially for the newbies coming to this forum.
you can still count to ten and tie your shoes right?
If anything, it's brain dysregulation. Accutane has the power to modulate our immune systems to fight off acne. Our symptoms are side effects that many people with chronic illnesses face. It's not damage!
47 minutes ago, Colinboko said:We seriously need to stop using the term "brain damage".... Especially for the newbies coming to this forum.
you can still count to ten and tie your shoes right?
You seem to misunderstand the definition of brain damage. One could sustain an injury in which a rod is lodged into the brain, and he/she could still count to ten. Aside from the story linked in which profound changes occurred (yet he was still somewhat functional), brain damage is not always readily noticed by outsiders. Look at NFL players; a large number of them have brain damage and can still memorize a playbook, socialize, and comprehend numbers. Brain damage usually involves deficits from one's former baseline, so you'd expect lowered moods, increased impulsivity, cognitive deficits, decreased engagement in hobbies, and even hormone deficiency.
I've linked the evidence countless times before. Accutane can and has caused brain damage as well as brain bloodblow abnormalities (indicative of potential damage). Yes, I have spoken to multiple post-Accutane users who have experienced it firsthand. You reiterate that we are all going through something different, but you seem to shy away from this specific side effect. Why? It's so well-documented!
Also, realize that organ damage can often elicit an inflammatory response. Brain damage is often coupled with neuroinflammation and damage to the intestinal tract (also confirmed by Accutane clinical trials) can cause inflammation of the intestinal tract, leading to IBD.
As always, sources provided upon request.
1 hour ago, ACCUiTy_drANE said:You seem to misunderstand the definition of brain damage. One could sustain an injury in which a rod is lodged into the brain, and he/she could still count to ten. Aside from the story linked in which profound changes occurred (yet he was still somewhat functional), brain damage is not always readily noticed by outsiders. Look at NFL players; a large number of them have brain damage and can still memorize a playbook, socialize, and comprehend numbers. Brain damage usually involves deficits from one's former baseline, so you'd expect lowered moods, increased impulsivity, cognitive deficits, decreased engagement in hobbies, and even hormone deficiency.I've linked the evidence countless times before. Accutane can and has caused brain damage as well as brain bloodblow abnormalities (indicative of potential damage). Yes, I have spoken to multiple post-Accutane users who have experienced it firsthand. You reiterate that we are all going through something different, but you seem to shy away from this specific side effect. Why? It's so well-documented!
Also, realize that organ damage can often elicit an inflammatory response. Brain damage is often coupled with neuroinflammation and damage to the intestinal tract (also confirmed by Accutane clinical trials) can cause inflammation of the intestinal tract, leading to IBD.
As always, sources provided upon request.
Well said - Brenner proved brain damage.
3 hours ago, ACCUiTy_drANE said:You seem to misunderstand the definition of brain damage. One could sustain an injury in which a rod is lodged into the brain, and he/she could still count to ten. Aside from the story linked in which profound changes occurred (yet he was still somewhat functional), brain damage is not always readily noticed by outsiders. Look at NFL players; a large number of them have brain damage and can still memorize a playbook, socialize, and comprehend numbers. Brain damage usually involves deficits from one's former baseline, so you'd expect lowered moods, increased impulsivity, cognitive deficits, decreased engagement in hobbies, and even hormone deficiency.I've linked the evidence countless times before. Accutane can and has caused brain damage as well as brain bloodblow abnormalities (indicative of potential damage). Yes, I have spoken to multiple post-Accutane users who have experienced it firsthand. You reiterate that we are all going through something different, but you seem to shy away from this specific side effect. Why? It's so well-documented!
Also, realize that organ damage can often elicit an inflammatory response. Brain damage is often coupled with neuroinflammation and damage to the intestinal tract (also confirmed by Accutane clinical trials) can cause inflammation of the intestinal tract, leading to IBD.
As always, sources provided upon request.
I respect your research and I see what you're saying (as I didn't know a lot of those facts), but I know for a fact when I first scrolled through this forum the words "brain damaged" scared the living shit out of me, forcing me to believe I'd be wheel chair bound, or brain dead within a year or so. The term is rather harsh for what we face in my opinion. I still believe only the frontal portion is affected (as it is for those with lupus, alzheimers etc). Brain damage in my opinion sounds irreversible. The psychological aspects of this syndrome are indefinitely caused by something else happening in the body and once that process is discovered, things could have a very high chance of normalizing. It just seems like everyone on this forum is out to get back at Roche when our aim should be getting our health back. It's like we want so badly to prove to them what they already fucking know but will never admit. And, to the users who have been here for years, honestly shame on you for not furthering testing. I've been a year post tane and I've had more tests done than half the "veterans" on here.
We need to stop scaring people into thinking this is our new "norm", and that nothing can or will get better.
Cognitive dysfunction and mood alteration is a common side effect of many disorders, and they don't classify it as "brain damage"
2 hours ago, Colinboko said:but I know for a fact when I first scrolled through this forum the words "brain damaged" scared the living shit out of me, forcing me to believe I'd be wheel chair bound, or brain dead within a year or so.
As I tell people on Accutane who get mad at me for sharing factual information about Accutane, I cannot control how people react to new knowledge.The truth simply matters. There is no reason to believe managing brain damage/brain alterations is so grim. We have more treatments for psychiatric problems and TBIs than ever. Also, studies on former alcoholics prove the brain does improve with time, even without special interventions.
2 hours ago, Colinboko said:And, to the users who have been here for years, honestly shame on you for not furthering testing. I've been a year post tane and I've had more tests done than half the "veterans" on here.
Yeah, aren't poor people annoying? Why can't they just have money like everyone else? (Friendly sarcasm, as I don't actually believe you were considering the cost of healthcare when you made your comment.)
The reality is that access to healthcare and thorough doctors differs drastically from one location to the next, even among developed nations. Personally, I am on Medicaid (reserved for low-income individuals in America) and I cannot order all of the tests I want. Getting hormone testing through a private clinic cost me approximately a two-week paycheck. I sucked it up and I'm not complaining, but realize not everyone has the same options as you. I was able to get some other basic tests, but nothing that would help me figure out anything too important. Most of the more telling tests involve going to expensive specialists. That being said, unfortunately testing doesn't always point to coherent treatment approach anyway, so how can a low-income person even justify spending half or more of their income on this?
Also, getting tests done is matter of what's even available to you. Some people are stonewalled by doctor-after-doctor even if they are willing/able to pay.
2 hours ago, Colinboko said:Cognitive dysfunction and mood alteration is a common side effect of many disorders, and they don't classify it as "brain damage"
True. New research into post-chemotherapy cognitive impairment suggests that it may be due to 1) damage to the myelin sheath and 2) impediment of myelin sheath restorative mechanisms. I would be very interested to see if this is the case for Accutane, as it pharmacologically behaves like other chemo drugs. What we need are studies on post-Accutane users with broad medical complaints. I think the apoptotic effects of the drug explain how we were hit with so many problems.
I will say that even still I hold out hope that fixing the liver or gut will result in many of my conditions diminishing - absolutely do feel hopeful on that level but as time goes on I can't ignore the facts presented.
We can't be blind to the science that many people post on here, in terms of my own experience in way of brain activity I really don't cope well with having to make decisions- I stress and get overwhelmed very easily whether I like it or not - I'm assuming it's due to frontal lobe issues.
In terms of testing and I say this with respect to all - what does it matter if you've done 4000 tests and I'm only up to 3000??
As a collective let's just say we've done a hell of a lot of testing and with more to come but it's not a contest and everybody's circumstances are different to what we can and can't access and the cost involved.
If you still believe there's the ultimate test out there for us tane victims than it's more about getting the right one over how many you've done, and as the science mounts up and people post about FACTS do we just brush them aside or should we start accepting that the answers might be already there in front of us?
Like i said, I'm still someone who gets torn between the two, I want to believe so much that there's a simple way out of this mess, I really do.
16 minutes ago, TrueJustice said:I will say that even still I hold out hope that fixing the liver or gut will result in many of my conditions diminishing - absolutely do feel hopeful on that level but as time goes on I can't ignore the facts presented.
We can't be blind to the science that many people post on here, in terms of my own experience in way of brain activity I really don't cope well with having to make decisions- I stress and get overwhelmed very easily whether I like it or not - I'm assuming it's due to frontal lobe issues.
In terms of testing and I say this with respect to all - what does it matter if you've done 4000 tests and I'm only up to 3000??
As a collective let's just say we've done a hell of a lot of testing and with more to come but it's not a contest and everybody's circumstances are different to what we can and can't access and the cost involved.If you still believe there's the ultimate test out there for us tane victims than it's more about getting the right one over how many you've done, and as the science mounts up and people post about FACTS do we just brush them aside or should we start accepting that the answers might be already there in front of us?
Like i said, I'm still someone who gets torn between the two, I want to believe so much that there's a simple way out of this mess, I really do.
I apologize for lashing out, it wasn't intended to be rude. However I disagree with your statement about "amount of tests" versus the "right one"...
You could very well test tomorrow on some of the stuff I've tested and get a result just like me.
Heres the scenario as I see it
Person A tests for something and gets an abnormal result and posts about it.
Person B gets the same test done and has no abnormal results and posts about it.
This discourages person C from testing because there was no connection made, and therefore he never gets it done even though he may have had an abnormal result. That test could very well be a connection for some, but not all. But a connection for some could help half of the sufferers on here.
People get normal results and throw shit under the rug and discourage others from thinking that it could be the case for them.
On 10/4/2017 at 0:30 PM, mariovitali said:If you find you have Liver fibrosis then Doctors will take you seriously as Fibrosis is something that needs to be stopped ASAP.
Also, please note that all people that were found with Liver fibrosis (6 out of 7 so far) had normal Liver enzymes.
What would be causing chronic liver inflammation to lead to this. In the examples you used, both cases had elevated liver enzymes.
You remove the offending agent and the liver should heal itself or stop worsening progression.
So are you saying there is a drug metabolite or virus (as thought for CFS) that continues to irritate and cause increasing damage to the liver that leads to fibrosis?
I believe there is obviously a end connection here, but I also believe there might be more connections that dont centralize around the liver.
That is a fair point you raise with testing - no doubt about it, I agree with what you've said there!!
Ok, so next week I get to discuss with my Naturopath my results for thyroid function. If nothing found I'm thinking up next:
ANA
Liver fibroscan
crohns
lupus
In between all this as I alternate between GP and my new Naturopath I have to get cholesterol/magnesium and estrogen checked - this is just looking at regular stuff, I'm not doing this for any groundbreaking knowledge in way of tane but with cholesterol beingso high last time I have to bring itdown to avoid needing medication!!I've been exercising as much as I can even with all the fatigue to help that and the fatty liver issue!!
Also as I continue to experiment I'm thinking back to basics with some D & E supplementing- it would be fucken magic if the D eased up the light sensitivity whilst the E improved systemic dryness!!
I'm open to hearing about any other tests people think are worthwhile!!?
Obviously Accutane affects people differently. It is androgenic. It is an immunomodulator. It has genetic transcription capabilities, therefore it likely has the ability to exacerbate your genetic predispositions whether it be hair loss, tendonitis, vision, digestion.
Chances are you would of had the same problems when you were 60-70. Only now you have them in your 20's-30's because you took Accutane.
So, every individual should get as many tests as they want, in all areas, and address any abnormal findings. However, if everything in the body comes back clean, then you might want to look at the brain, specifically the hippocampus, because that's what the evidence is showing.
My hepatic function panel have always come back ideal throughout the past 4 years, and the numbers have stayed the same, even throughout my drinking days (except for high cholesterol, now fixed with diet and running). I don't mind doing a liver flush, but I'm not looking too much more into it. Remember, alcoholics drink for decades. Ethanol is the most destructive chemical, scarring seen on CT scans, and can make full recoveries. Accutane is powerful too, but in a tricky, more sinister capacity.