@guitarman01

Anything generating ER Stress or impairing Autophagy should be dealt with (hypothesis). TD below means "Thiamine Deficiency"

Quote

We have also shown that TD activates double-stranded RNA-activated protein kinase (PKR) which is also believed to play an important role in ER stress [97, 98]. These findings suggest that ER stress may underlie TD-induced damage to the CNS. To date, the mechanisms underlying TD-induced ER stress is unclear. It has been well documented that oxidative stress and disruption of calcium homeostasis can cause ER stress [99, 100].

and

Quote

These results suggest that autophagy is neuroprotective in response to TD-induced neurodegeneration in the CNS. There are several potential mechanisms for TD-induced autophagy. For example, TD is shown to affect mechanistic target of rapamycin (mTOR) and AMP- activated protein kinase (AMPK) pathways which are critical regulators of autophagy [73]. Additionally, TD may activate autophagy through the induction of oxidative stress and/or ER stress because both oxidative stress and ER stress are known to stimulate autophagy

There are people that experiment with Rapamycin however i believe that you work through the different pathways.

18 hours ago, mariovitali said:

disruption of calcium homeostasis can cause ER stress

I think you were closer looking at k2.
At least a thiamine whole blood test is a easy enough test, to rule this out.
I would get this test myself, but I dont have real strong belief in it atm.

On 20/09/2017 at 5:10 AM, hatetane said:

I received this via PM:

Hey, have seen gbolduev posts on rpforum?

Here is a quote of him

Same thing with accutane people. Accutane is an active vitamin A, it is retinoic acid. it by passes all the regulations in retonoid 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.

You see it is exactly the same. I hope you post this on some accutane forums. I hate that those people are suffering for many many years

Can I ask a question to those looking at Vit K and all these obscure tests - why are we looking further than what's said in the quote above??

Should we not accept what this guy has said about it tanking everything from Zinc to magnesium and bingo there's your answer on what it's done to us?

I ask this out out of respect as I know many of you invest hours into researching this and that but what happens on this forum too often is we skip straight over stuff and I'm thinking after 544 pages we kinda know what it's done and we're now digging around where we don't need to!!?

49 minutes ago, TrueJustice said:

Can I ask a question to those looking at Vit K and all these obscure tests - why are we looking further than what's said in the quote above??

All of those supplements that person mentioned above have been pretty extensively looked at and tested. Im not that familiar with progesterone though, never taken it. Other then that, I don't believe they play a significant factor in my opinion. Some could be antagonistic looking at vitamin k dependant proteins or processes. For example just like matrix gla protein binds phospholipids and calcium ions, it also might bind zinc ions. Meaning regulate.

I could tell you your problems are mental and after 20 years its not the accutane. I could tell you that you, need psychiatric help.
Thats why we look at obscure tests.

19 minutes ago, guitarman01 said:

All of those supplements that person mentioned above have been pretty extensively looked at and tested. Im not that familiar with progesterone though, never taken it. Other then that, I don't believe they play a significant factor in my opinion. Some could be antagonistic looking at vitamin k dependant proteins or processes. For example just like matrix gla protein binds phospholipids and calcium ions, it also might bind zinc ions. Meaning regulate.

I could tell you your problems are mental and after 20 years its not the accutane. I could tell you that you, need psychiatric help.
Thats why we look at obscure tests.

Well I was thinking that too, yes we've all tried those supplements with various degrees of success but what he said made me think it's an absorption issue we might have - in a nutshell tane tanked everything and it's the receptors that are screwed or something?

Its more than phyciatric for me, it's that plus more - fatigue, light sensitivity etc etc, I appreciate the obscure tests don't get me wrong, I just hope we haven't glanced over important findings along the way.

The Vit K thing I want to be true but other than supplementing with it, what else can we possibly do with K??

2 hours ago, TrueJustice said:

Well I was thinking that too, yes we've all tried those supplements with various degrees of success but what he said made me think it's an absorption issue we might have - in a nutshell tane tanked everything and it's the receptors that are screwed or something?

Its more than phyciatric for me, it's that plus more - fatigue, light sensitivity etc etc, I appreciate the obscure tests don't get me wrong, I just hope we haven't glanced over important findings along the way.

The Vit K thing I want to be true but other than supplementing with it, what else can we possibly do with K??

We have way too many people on this forum that think everyone has the same exact problem. (Not calling you out by any means) And that if they stick around and not get tested that someone will just figure it out for them, cause we're all the same right? In my opinion no. Yes our whole slew of symptoms may relate to one another but our bodies are different...

47 minutes ago, Colinboko said:

We have way too many people on this forum that think everyone has the same exact problem. (Not calling you out by any means) And that if they stick around and not get tested that someone will just figure it out for them, cause we're all the same right? In my opinion no. Yes our whole slew of symptoms may relate to one another but our bodies are different...

I agree to a point but then you and I have very similar issues going on, even the most common things like eye floaters, thinning hair, lack of oil etc etc - we certainly don't need to be tested for that, we know this ourselves and a heap of us have this in common yeah!?

I've been banging on a bit about Vit k but personally I'm not benefiting from any supplementing - my joints hurt esp lower back, if I didn't know any better I'd say I have calcification issues - varicose veins etc.

I'll get to the more obscure testing soon, I've just got to exhaust some of the other tests first - this week I got tested for full thyroid, tests will come back to naturopath in about 2 weeks.

Couple more to do then I'll look at Autoimmune tests....

https://www.drugwatch.com/accutane/lawsuit/

1 hour ago, Gladiatoro said:

https://www.drugwatch.com/accutane/lawsuit/

Thats a nice little statistic to rattle off to your doctor..."hey doc, how much do you think Roche have paid out thus far to Roaccutane victims??"

Try 53 million dollars.....WOW!!!
why don't they put that on the packaging?

On another note, what is the test for Crohn's disease? Is it a blood test or is there more to it?

On 9/23/2017 at 1:06 AM, TrueJustice said:

I've been banging on a bit about Vit k but personally I'm not benefiting from any supplementing - my joints hurt esp lower back, if I didn't know any better I'd say I have calcification issues - varicose veins etc.

If something is possibly affecting the cardiac, nervous and skeletal systems, this should have been figured out right when it started happening. Not years later. At this point (for some of us) some effects could be mitigated or stopped, I'm not sure about complete reversal.
Thats why im still pressing myself, to be able to make a real link to the drug. Its going to become harder though the more time that passes.

48 minutes ago, guitarman01 said:

If something is possibly affecting the cardiac, nervous and skeletal systems, this should have been figured out right when it started happening. Not years later. At this point (for some of us) some effects could be mitigated or stopped, I'm not sure about complete reversal.
Thats why im still pressing myself, to be able to make a real link to the drug. Its going to become harder though the more time that passes.

How many years post are you again?

This is the exact reason I hopped into testing right when my voice started giving me problems. I can't lose that...

I have been doing my 24 urine protein electrophoresis analysis all day today and drop it off tomorrow. Will keep you updated. I'm going to call the neurologist tomorrow and ask what my blood tests read exactly so I know what I'm dealing with

20 years

sure the Internet was around then but I didn't have a computer or anything to look into how dangerous this drug is.....

so much regret....

On 9/22/2017 at 9:54 PM, TrueJustice said:

Can I ask a question to those looking at Vit K and all these obscure tests - why are we looking further than what's said in the quote above??

Should we not accept what this guy has said about it tanking everything from Zinc to magnesium and bingo there's your answer on what it's done to us?

High dose zinc can modulate receptors, but it has nothing to do with zinc deficiency, it's a pharmacological effect, and nothing special.

The only thing there that's always important is the NAD. It modulates the SIRT proteins and acetylation of DNA. It's not just a coenzyme, the actions of atRA on genes during the accutane course depended on NAD, SIRT and everything they modify. The long term problems won't be fixed by taking nicotinamide riboside, but it could help boost something else.

Greetings, i have been on accutanefor 3 months(first time) and after i stopped, idon't remember if it was immediately but short after iget stinky,verythick semubsitting on top of my face's surface.I can't get it away with regular wash, i have to use my fingernails and repeatedly after 10 minutes i get most of it away.
It's been this way for 2+ years now and it doesn't seem to stop.What's my opions here?Is there any summplement/treatementto follow?

Im thinking of these:A)Useof spinning brush, it won't solve my problem but PROBABLY??? it wil help me get it away easier?
B)Go on accutane again?

Edit just to note that i'mon clean diet for more a year now but i won't change anything.

1 hour ago, DTsuras said:

Greetings, i have been on accutanefor 3 months(first time) and after i stopped, idon't remember if it was immediately but short after iget stinky,verythick semubsitting on top of my face's surface.I can't get it away with regular wash, i have to use my fingernails and repeatedly after 10 minutes i get most of it away.
It's been this way for 2+ years now and it doesn't seem to stop.What's my opions here?Is there any summplement/treatementto follow?

Im thinking of these:A)Useof spinning brush, it won't solve my problem but PROBABLY??? it wil help me get it away easier?
B)Go on accutane again?

Edit just to note that i'mon clean diet for more a year now but i won't change anything.

hello friend ,if you can speak another lang it could be better.i strongly recomend you before anything else to make some blood test for some nutrients,minerals because this drugs can harm the body ,Vitamin d3 ,b12,iron ,and mutation of folic acid metabolism MTHFR.my d levels tend to zero ,

2 hours ago, feastofvermin said:

High dose zinc can modulate receptors, but it has nothing to do with zinc deficiency, it's a pharmacological effect, and nothing special.

The only thing there that's always important is the NAD. It modulates the SIRT proteins and acetylation of DNA. It's not just a coenzyme, the actions of atRA on genes during the accutane course depended on NAD, SIRT and everything they modify. The long term problems won't be fixed by taking nicotinamide riboside, but it could help boost something else.

Thx for info!!

what are you taking for tane issues??

list top 3 products pls?

Really frothy, foamy, cloudy urine?

anyone?

This worries me a bit. Did submit my 24 hr urine sample though. So I guess I'll find out shortly

47 minutes ago, Colinboko said:

Really frothy, foamy, cloudy urine?

anyone?

This worries me a bit. Did submit my 24 hr urine sample though. So I guess I'll find out shortly

Don't want to scare u but could be protein
my dad has kidney disease and his urine is like that
also could be dehydrated
then again idk

2 minutes ago, Nemesisbrady said:

Don't want to scare u but could be protein
my dad has kidney disease and his urine is like that
also could be dehydrated
then again idk

I think the inflammation in my body is certainly affecting my kidneys. AND liver cause my stool is all wonky colors too

On 9/24/2017 at 4:07 PM, Colinboko said:

How many years post are you again?

20. I think I was 14 or 15. Way too young to be taking accutane. I would have grown out of it. I even remember my derm saying something like "your still growing" when considering accutane, sort of thinking out loud. I never asked for it though. He was the one that brought accutane up, For persistent acne.

Heres part 2. It looks like they are mainly focusing on sexual problems. Solve one though, maybe solve the rest.
https://rxisk.org/rxisk-prize-how-you-can-help/

On 7/9/2017 at 5:58 AM, mariovitali said:

I insist that the Liver is the main problem here. I was "lucky" enough to be able to identify the vicious cycle as it was happening. Allow me to explain this :

When i crashed from Finasteride the following things happened :

-Joint pain
-Urticaria
-ED
- Tinnitus
-Dyshpagia

The doctors were at loss. One specifically has asked me to get back to him to tell him what was wrong in case i ever knew. Notice how many of symptoms resembled autoimmune disease.

Tinnitus was the most important symptom. Because over the year i learnt that Tinnitus would signify yet another "crash" and being back to square 1 .

The vicious cycle was as follows :

1) Tinnitus
2) Depression, impotence, neurological problems etc
3) Getting slowly better, ED slightly better
4) Good erections
5) Back to 1

In other words it appeared to me that the Liver was "crashing" (aka "Unfolded protein response" - step 1)

At step 3the Liver slowly starts to metabolise hormones/neurosteroids etc thus i was feeling slightly better
At step 4 (which unfortunately would not last long) the Liver has metabolised Hormones, Neurosteroids : All well until...
Step 5 comes up again simply because the Liver gets overwhelmed by Hormone metabolism which leads to yet one more unfolded protein response. Then the cycle starts all over again.

Like this right here. This is what im talking about. Fixing one problem. Only people that have dealt with this ear fullness,clogged ears, know this. Im not so sure this is Tinnitus. Im thinking almost a structural weakness that is causing the passageway to become sort of collapsed and then blocked with thick mucus.

Same thats going on with the muscle weakness in the throat of colinboko. I got it too. Its a generalised muscle weakness. Same type of mechanism that could be regulating cerebral blood flow. Ive posted the study.
This muscle weakness could actually be coming from the bones , or musculoskeletal.
The bones are very much living tissue and can signal crosstalk and muscle contractions.
muscle contractions stimulate growth.

28 minutes ago, guitarman01 said:

Like this right here. This is what im talking about. Fixing one problem. Only people that have dealt with this ear fullness,clogged ears, know this. Im not so sure this is Tinnitus. Im thinking almost a structural weakness that is causing the passageway to become sort of collapsed and then blocked with thick mucus.

Same thats going on with the muscle weakness in the throat of colinboko. I got it too. Its a generalised muscle weakness. Same type of mechanism that could be regulating cerebral blood flow. Ive posted the study.
This muscle weakness could actually be coming from the bones , or musculoskeletal.
The bones are very much living tissue and can signal crosstalk and muscle contractions.
muscle contractions stimulate growth.

Elaborate just a bit please.

This is interesting because I also notice that I'll "flare" and towards the end of the flare, I'll start to get used to the symptoms to where they don't feel as bad as they did, and it doesn't seem so bad. But then I'll have a moment where I get crazy brain fog and fullness in my head/ears and get super spacey and BAM. Back into usually an even worse flare.

All in all, I've definitely gotten worse though. It's not like I've ever had a feeling of "omg I'm getting better"

The one thing that is kinda strange that has stayed pretty normal through this entire process is my ability to still get erections. Definitely nowhere near as hard before all this shit but I'm not completely riddled impotent..

11 minutes ago, Colinboko said:

Elaborate just a bit please.

Meaning how do you gage illness or getting better when there is no medical signs of illness?
Also taking the mental aspect out of it.
ive had a few abnormal labs that im looking into, but other then that most people find nothing.

15 minutes ago, guitarman01 said:

Meaning how do you gage illness or getting better when there is no medical signs of illness?
Also taking the mental aspect out of it.
ive had a few abnormal labs that im looking into, but other then that most people find nothing.

Yup.

Dont quite understand how we can feel as shitty as we do and not have a single abnormal test (some here and there). But no solid answers.

It's also ridiculously hard to know what could have changed because I never had a single blood test done until post tane. Like if we had tests to prove things that could have altered during iso treatment we may be in a different boat. Like today I found out my total protein serum level is high. Like I wonder what it was pre-tane. Accutane modulates us enough to burn a slow fire in our bodies but not enough for crazy abnormal results

Therefore we're denied possible treatments that could 100% reverse this! Or let us live relatively normal lives! What if long term methotrexate or prednisone could shift us back? No one will ever know