Link to the wikipedia article, it's better than the standard wikipedia fare: https://en.wikipedia.org/wiki/-opioid_receptor

It also causes prolactin release (and lowered dopamine).

This is more theoretical, but certain terpenoids actually agonise kappa-opioid directly. So there's even remote possibility that some derivative of retinol worsens it directly since it's a terpenoid. This is a problem for the Abscisic Acid thing cause foods contain bunch of different terpenoids, so the isolated substance is needed more than anything.

1 hour ago, feastofvermin said:

The cholinergic system could also be involved, but it's so complicated I can't even tell which way my receptors might be going.

Acetylcholine and antiphospholipid autoantibodies are seen in various autoimmune and chronic illnesses
I have both of these antibodies. Ganglionic acetylcholine neuronal antibody and antiphospholipid antibody. I have a dr appointment tomorrow to maybe shed some more light on this

On 9/6/2017 at 1:58 AM, Jorcruz24 said:

Have any of you in the states been seen by the Mayo Clinic?

I got an appointment set up at the Mayo Clinic in Rochester later this month, which is supposed to be the best hospital in the country. I'm assuming if they can't find anything, the medical field is absolutely useless for me.

The only concern I have is that I was sent a package for my stay and the first day consists of blood work, but the following days are scheduled with the department of psychiatry, a visit with a Fybromyalgia and a chronic fatigue specialist.

This is actually a good thing that you are seeing a chronic fatigue specialist. This means they take this field seriously and should be up on the most current research.
How did you end up booking your appointment through Mayo? Ive been turned down twice now, even with a referral from my doctor.

8 hours ago, TrueJustice said:

Yep it's on the to do list....

last month amalgams all removed with teeth, last few weeks varicose vein issues, this week eyes tested ( nothing major found, slight sun damage etc ) light sensitivity comes with age they say, I wasn't there to bring up tane so I didn't go there

Soon there'll be more blood tests for cholesterol but somewhere in there I'm either pursuing seeing a Neurologist or delving into Autoimmune work - I don't know which one first??

The whole eye thing for me, definitely seems like some form of optic neuritis...

I see stars when I roll my eyes and my vision has progressively gotten worse. They just ache, tire quickly and hate my contacts. As well as my hearing (muted)

Whatever autoimmune bullshit I have going on, it's definitely attacking my nerves. Because with my vocal cord problem, ears, eyes... nerves are definitely being disrupted (I won't say damaged because damaged is a scary word and I hear of a lot of autoimmune sufferers being able to turn these things around with medication)

On 9/6/2017 at 1:58 AM, Jorcruz24 said:

Ill give an update with any progress but I'm also starting to get to the point that I'm so angry that I have to deal with this everyday and possibly for the rest of my life that I feel somone has to be held accountable.

When you go to Mayo I would just be adamant about the fact that accutane did this to you. there are some tests that ive mentioned quite a few times that should be looked into that the CFS specialist should be familiar with if you want to try to pin this on the drug manufacturer.
if this triggered any autoimmune illness, autonomic dysfunction, vascular diseases like POTS, brain inflammation, etc,
This might be your best chance, so keep all of this in mind.

4 minutes ago, guitarman01 said:

When you go to Mayo I would just be adamant about the fact that accutane did this to you. there are some tests that ive mentioned quite a few times that should be looked into that the CFS specialist should be familiar with if you want to try to pin this on the drug manufacturer.
if this triggered any autoimmune illness, autonomic dysfunction, vascular diseases like POTS, brain inflammation, etc,
This might be your best chance, so keep all of this in mind.

I agree that we should be adamant and on top of telling people that this was caused by accutane.. but I've gotten further by not saying that than I have by saying it. Once I get a for sure dx I'll be like.. "HEY LET'S TAKE A LOOK AT THE DRUGS I TOOK BEFORE THIS ONSET.. OOOOH ACCUTANE!"

But for now, I don't care about getting Roche in trouble.. it's my health I need back. Then I can call them out.

1 hour ago, guitarman01 said:

Acetylcholine and antiphospholipid autoantibodies are seen in various autoimmune and chronic illnesses
I have both of these antibodies. Ganglionic acetylcholine neuronal antibody and antiphospholipid antibody. I have a dr appointment tomorrow to maybe shed some more light on this

Sounds good, let's hear it. I know people with ME/CFS end up with acetylcholine antibodies but never fit me. Problem, it'll be almost impossible to link that to accutane. In immune research retinoic acid is always seen as a positive e.g. increasing Tregs and preventing TH17. That would simplistically suggest prolonged retinoic acid deficiency at best. I think a lot more happens taking the drug that could predispose to this including acetylcholinerelease and rewiring acetylcholine system all while affecting immune cells, but there's no research that I saw to link it together.

And by that I mean a causal mechanism. Since there ARE recorded cases of autoimmunity after accutane like these, but they write they have no idea what happened:
https://www.hindawi.com/journals/cripe/2017/4207656/#B8
https://www.karger.com/Article/Abstract/345680

3 hours ago, Colinboko said:

I agree that we should be adamant and on top of telling people that this was caused by accutane.. but I've gotten further by not saying that than I have by saying it. Once I get a for sure dx I'll be like.. "HEY LET'S TAKE A LOOK AT THE DRUGS I TOOK BEFORE THIS ONSET.. OOOOH ACCUTANE!"

But for now, I don't care about getting Roche in trouble.. it's my health I need back. Then I can call them out.

I know what your saying. Ive tried both approaches with different doctors. The problem is, its going to be harder to trace this back to Accutane the further out you get. Looking at it from a legal standpoint there is also the statute of limitations. Even if someone did find something, you might no longer have any legal options. The people that recently came off accutane and have the knowledge of this forum and the internet can make the link and might be in a unique position to do something about it.

2 hours ago, feastofvermin said:

I know people with ME/CFS end up with acetylcholine antibodies but never fit me. Problem, it'll be almost impossible to link that to accutane.

Have you had these tests?

Dysautonomia International: Autoimmune Autonomic Ganglionopathy ...

10 minutes ago, guitarman01 said:

Problem, it'll be almost impossible to link that to accutane.

I think it would be easy actually if we found enough in common. What you can put on paper that is. Thats not "in our heads"

I'm going to try the a
i do eat carrots and stuff but I doubt that is even being converted to the a you need from eggs and such

i do feel really dry the next day after doing veggies but could be in my head or something else

they are doing a pituatry MRI with contrast
because my lh was high now normal
my t levels are 900 and estrogen is 50
which is high
im suffering with flushing cold hands feet dermatitis Rosacea
dry eyes nose skin
eye bags
and erectile issues sleep issues
anger OCD anxiety depression

which she said probably not my t levels and estrogen ok if it's elevated

but I feel hot flashes and cold sensitivity
also the iodine they gave me raised my urine iodine levels triple the amount it should be
and my tsh went from 1.15-3.30
so idk
was told years ago I had thyroiditis and they gave me med and I lost mad weight so they stopped it and said my thyroid was normal

my liver enzymes were sky high for years and never saw a liver doc or biopsy
milk thistle made it normal
so they brushed it off....
so sick of feeling this way
i know suicide is looked down on from people
but suffering and barely existing secluded from society at 28 is not fun

Not going to lie, I've been so hooked on this thread that I didn't really explore other post accutane threads and there are TONS of people with accutane induced autoimmune diseases..... Lamarr, OliGirl and Shantelle to name a few.

Seems to be a pretty common thing with accutane that I never really thought about. The funniest thing for me is when I used to get sick.. my acne would clear up.. and my skin would become less oily. Now that I'm chronically ill (assuming it's autoimmune) my acne is kept under control but I feel like crap. This fucking drug is capable of modulating someone's immune system. That's pretty fucked up

Something to also note.. I got a HORRIBLE butterfly type rash the first time I stepped foot in the sun this summer... 90% sure this fucking drug initiated lupus..

It's important to keep track of EVERY little symptom guys. I know you've heard me talk about the whole "not getting sick" or "flu/fever" since the onset of my symptoms but that is something I noticed that could've just went right over my head had I not paid attention to my body. Then use the more "visible" symptoms (i.e. My vocal cord paresis) to get doctors on board. Then they will want to test and help..

Has anyone done dexamethasone test??
im taking the pill at 11
and getting blood drawn at 7am

4 minutes ago, Nemesisbrady said:

Has anyone done dexamethasone test??
im taking the pill at 11
and getting blood drawn at 7am

How much dexamethasone?

1mg lol not sure if that's enough to tell

Doc put me on testosterone shots. .5 every 2 weeks to start.

Anyone has experience and can tell me what to expect?

55 minutes ago, MonsterDiesel said:

Doc put me on testosterone shots.  .5 every 2 weeks to start.

Anyone has experience and can tell me what to expect?

Not sure I have the opposite high estrogen and t levels 
wonder why some have low and high after tane
makes me feel little better

its def hormone issues from tane and pituatry or other organs

i did see a video on low t this dude shows his progress 
he got jacked and more energy and libido increase

so I guess look forward to good stuff

On 9/6/2017 at 9:45 AM, guitarman01 said:

So I take it these patients are getting fibroscans ordered by their doctor with no other signs of liver inflammation or injury such as elevated liver enzymes? This seems to be a pretty mild elevation, especially given the person's age. I do believe in the gut-liver-brain axis, but this elevation is very mild, one kpa point lower and it would be considered close to normal.
Is it mainly gastroenterologists ordering these tests?
How easily are the doctors convinced to run this scan or even justify it, if all other liver function tests are normal?

The patients ask themselves for evaluation and they pay for the test (around $200 in Greece)

Normal Liver enzymes do not rule out Liver disease as the Liver can compensate even if Fibrosis occurs. Doctors will order tests, thse are coming back normal and as years go by Fibrosis continues and then it's too late.

8.5 is by no means close to normal but it's not severe as well. This is mild to moderate fibrosis according to the person who did the test (the doctor)

I also posted more things on my Blog which may be of interest, one of this posts discusses about Retinoids and their association with LXR and PPARs :

[removed]

So, today I sat next to a guy on the train and he was definitely sick. As I got home I started to feel that "malaise"-y flu type acheyness. Within hours it started to dissipate. This is so freakin weird. And, so I thought about it and I haven't had GREEN mucus since this shit happened. Every time I cough something up or sneeze.. it's ALWAYS clear. This makes me wonder about my immune system being constantly active and so it fights everything extremely fast that it never has the chance to get to the "green mucus" stage? 

On 9/8/2017 at 9:23 AM, mariovitali said:

The patients ask themselves for evaluation and they pay for the test (around $200 in Greece)

Normal Liver enzymes do not rule out Liver disease as the Liver can compensate even if Fibrosis occurs. Doctors will order tests, thse are coming back normal and as years go by Fibrosis continues and then it's too late.

8.5 is by no means close to normal but it's not severe as well. This is mild to moderate fibrosis according to the person who did the test (the doctor)

I also posted more things on my Blog which may be of interest, one of this posts discusses about Retinoids and their association with LXR and PPARs :

[removed]

And also can we agree that one could very well have this going on after tane as well as Brain/hormonal issues yeah!!?

So even if you repaired your liver then it doesn't necessarily equate to all problems solved as you could still have all these head related issues to deal with correct?

And for that matter you could also have autoimmune issues to deal with...

13 minutes ago, TrueJustice said:

And also can we agree that one could very well have this going on after tane as well as Brain/hormonal issues yeah!!?

So even if you repaired your liver then it doesn't necessarily equate to all problems solved as you could still have all these head related issues to deal with correct?

And for that matter you could also have autoimmune issues to deal with...

I think a lot of the head issues are autoimmune related. Work on that and we could possibly clear our heads

53 minutes ago, Colinboko said:

1 hour ago, TrueJustice said:

And also can we agree that one could very well have this going on after tane as well as Brain/hormonal issues yeah!!?

So even if you repaired your liver then it doesn't necessarily equate to all problems solved as you could still have all these head related issues to deal with correct?

And for that matter you could also have autoimmune issues to deal with...

I think a lot of the head issues are autoimmune related. Work on that and we could possibly clear our heads

Well I certainly hope so because if we spend another year of two thinking it's autoimmune related and it turns out it's not and that we should be focused on liver that would be most annoying and potentially harmful.

Especially if time is critical in treating the liver, for me after 20 years it might be too late, for the new comers acting now might be vital....

23 minutes ago, TrueJustice said:

Well I certainly hope so because if we spend another year of two thinking it's autoimmune related and it turns out it's not and that we should be focused on liver that would be most annoying and potentially harmful.

Especially if time is critical in treating the liver, for me after 20 years it might be too late, for the new comers acting now might be vital....

That's because most people on here are taking forever to ask for tests. I've tested more than half the "veterans" on this site and I'm a year post tane today.

1 hour ago, Colinboko said:

2 hours ago, TrueJustice said:

Well I certainly hope so because if we spend another year of two thinking it's autoimmune related and it turns out it's not and that we should be focused on liver that would be most annoying and potentially harmful.

Especially if time is critical in treating the liver, for me after 20 years it might be too late, for the new comers acting now might be vital....

That's because most people on here are taking forever to ask for tests. I've tested more than half the "veterans" on this site and I'm a year post tane today.

Thats good and a credit to you for putting in the hard yards - things are evolving on a positive note over the last few years,
The problem in the early days for me say around 2003 - 2004 was that the only obvious thing to test was liver related, I've now had 2 liver ultrasounds determining fatty liver but in our case that doesn't conclude shit - prob half of society has a fatty liver, its only on this forum that I've heard of fibroscans etc which no doctor has ever asked for.

You'll get more info off forum than talking to most doctors - too many of them as we know are nothing but vague....

Anyway, last year was gut and colon tests - well they did find herniated oesophagus and I now live more comfortably without heartburn so grateful for that.

Im going to do autoimmune tests over next few months. I've had a whole bunch of other shit tested in blood work like Vit levels and testosterone- like everyone else though, those tests are forever inconclusive.

Sorry to derail the thread -

Does anybody else have slow healing wounds and any little scratch or cut turns into a scar now?

What does it suggest?

I'm seeing a specialist next week regards pains under my right rib (liver/gallbladder), and issues I have intermittently, seemingly with digesting fat.

All my liver enzymes, bilirubin etc always come back fine, and I've had multiple ultrasounds on the area, again nothing abnormal shows up on these.

Many of the symptoms seem to tie in with cholestasis Not hard to find evidence of others who have also had what they believe to be accutane induced cholestasis (the lack of bile obviously then results in poor absorption of fat soluble vitamins, bad night vision anyone?!, and an overgrowth of bad bacteria - again there is no doubt about that);

Quote

My liver doesn't produce enough bile, a side effect of an Accutane treatment 8 years ago.

From the Mayo Clinic: "Vitamin A toxicity may lead to intrahepatic cholestasis, a condition where bile cannot flow from the liver into the intestines. Treatment with ursodeoxycholic acid has been shown to greatly improve the symptoms of cholestasis."

https://www.paleohacks.com/supplements/hack-my-liver-s-bile-production-10651

Also the 8 tips for accutane video on youtube

Quote

1. Reduce the load of the crammed bile caused by cholastasis by supplementing with bile acids, ox bile, granulated lecithin, and/or Chinese bitters. We advise you to use a reputable Brand, which will aid your body in using fat-soluble vitamins again.

Last year I was very ill for about 10 days where if I ate anything with fat in, 45 minutes later I would feel like I'd been poisoned, racing heart, nausea, extreme anxiety. After eating just sauerkraut, potato, fat free yoghurt and tomatoes for a week this went - and resulted in 2 days of my side effecting disappearing. Didn't last obviously, but I did start eating fat again.

TUDCA did give me some benefits, I started sweating again when taking 250mg x 3 per day, but after a month or so I started getting chest pains so stopped taking it. May give it another go.

I've tried ox bile, granulated lecithin and chinese bitters before, but I'm trying chinese bitters again and have ordered sunflower lecithin as soy raises estrogen so I avoid that now.

Many studies show the benefits of TUDCA for treating cholestasis

Quote

TUDCA is a water soluble bile acid. It shows great potency in treating cholestasis (bile acid backup in the liver) as the water soluble bile acids counteract the toxicity of regular bile acids.

https://examine.com/supplements/tauroursodeoxycholic-acid/

12 hours ago, Colinboko said:

12 hours ago, TrueJustice said:

Well I certainly hope so because if we spend another year of two thinking it's autoimmune related and it turns out it's not and that we should be focused on liver that would be most annoying and potentially harmful.

Especially if time is critical in treating the liver, for me after 20 years it might be too late, for the new comers acting now might be vital....

That's because most people on here are taking forever to ask for tests. I've tested more than half the "veterans" on this site and I'm a year post tane today.

I don't think the problem is that we're not asking for the tests, it's that the doctors won't give it to us since all the other tests come back normal. It's also because it's a long process I've been to 2 different primary doctors because the first one kind of just have up trying to find something. That takes time and money, not to mention the emotional drain this has on us to constantly go to the doctor and never get answers.