@guitarman01

Very Good article. Note that it discusses FXR, the Farnesoid X Receptor.

Please see below (Posted September 4th 2016) :

http://forums.phoenixrising.me/index.php?threads/unfolded-protein-response-and-a-possible-treatment-for-cfs.37244/page-85#post-759322

23 hours ago, mariovitali said:

True, however even certain types of food may not be a good idea. Yes i am taking only supplements.

As an example consider Grapefruit which is a P450 Inhibitor. If you are taking a Drug and you eat Grapefruit then you are raising the chance of having side effects because a P450 inhibitor slows down the metabolism of Drugs by your Liver.

I think that if any CFS/PFS/Post-Accutane sufferer eats Grapefruit then they will most likely have very nasty symptoms. DO NOT try this.

Well, we seem to back into discussing the liver again, interesting with what you say about grapefruit. If you do the Moritz liver/gallbladder cleanse by the book it suggests mixing the olive oil with grapefruit juice on the night of the cleanse. I wonder why someone of his intelligence would suggest this if it hindered cleaning up the very thing you're trying to detox - the liver....

I'm not saying Moritz was the only authority on how to detox but from reading and following his book you'd have to conclude he knows a thing or two about the process and anecdotally there's plenty of success stories coming from his process.

I will say that after doing 5 and not feeling any better I was disappointed- perhaps I should be doing more and to be honest if we do indeed have liver damage I doubt that any amount of detoxing will fix it. I know that the liver apparently has great capacity for repairing itself but if you have liver cancer for example, you're going to need more than just a detox.

I'm expecting people to say that the Moritz detox is a load of rubbish and maybe for tane victims it's not the answer but obviously for some people it's worked wonders who needed to clean up their livers!!

Itll be interesting to see where we go next with fixing up the liver!!

13 hours ago, mariovitali said:

In my theory, nothing is wrong with the immune system.

You said that you do not catch bugs, flu etc. Next time when the flu is around try taking N-Acetyl Glucosamine (NAG) and see what happens.

I wanted also to ask you : Did you get child diseases such as chickenpox and measles?

Please see the following Post :

http://forums.phoenixrising.me/index.php?threads/unfolded-protein-response-and-a-possible-treatment-for-cfs.37244/page-67#post-683290

Yeah, I had chicken pox.

I came onto this thread to try to find a way to bring my oil production and skin healing back - the more I read, the more ideas i get in my head about other things that could be wrong with me that really aren't. I'm perfectly healthy except for the skin issue.

I don't think a lot of posts in this thread are good for peoples anxiety and train of thought.

Don't want to offend anyone with this post - It has just been my thought whilst reading the past couple of pages.

On the contrary. Post Accutane a lot of us don't catch the flu or get sick often. I have caught the cold or "flu" a couple of times in these past 8 years, and exhibit the common sysmptoms (sneezing, coughing, weakness), but it is very short lived (48hrs) and truth be told, if I wanted to, I could run several miles sick, but to my brains detriment. this is because my brain does not react properly anymore, not a good thing. Neurological/nervous system "blunted" feeling. Same thing with exercise,food, sex, or drugs. It doesn't feel as pleasurable anymore. Has to be serotonin or dopamine related.

-----------------

Yes, but who are we going to convince that we have a particular organ issue like the liver? A CT-scan most likely shows an otherwise healthy liver compared to those that actually have deteriorated livers. As well as our blood values. Only one person here discussed having a surgical sample removed during an operation where the surgeon described "unsual perforations", but this was one anecdotal case. I took the drug for a month. Hans took it for 3 days before his ED and side effects set in. Some of you who took it for 6months and multiple courses, I can see organ damage being a possibility. Lets be logical. Like I said the most plausible explanation is something, genetic, hormonal, or neurological imbalances...

43 minutes ago, macleod said:

On the contrary. Post Accutane a lot of us don't catch the flu or get sick often. I have caught the cold or "flu" a couple of times in these past 8 years, and exhibit the common sysmptoms (sneezing, coughing, weakness), but it is very short lived (48hrs) and truth be told, if I wanted to, I could run several miles sick, but to my brains detriment. this is because my brain does not react properly anymore, not a good thing. Neurological/nervous system "blunted" feeling. Same thing with exercise,food, sex, or drugs. It doesn't feel as pleasurable anymore. Has to be serotonin or dopamine related.

-----------------

Yes, but who are we going to convince that we have a particular organ issue like the liver? A CT-scan most likely shows an otherwise healthy liver compared to those that actually have deteriorated livers. As well as our blood values. Only one person here discussed having a surgical sample removed during an operation where the surgeon described "unsual perforations", but this was one anecdotal case. I took the drug for a month. Hans took it for 3 days before his ED and side effects set in. Some of you who took it for 6months and multiple courses, I can see organ damage being a possibility. Lets be logical. Like I said the most plausible explanation is something, genetic, hormonal, or neurological imbalances...

You make some very good points, esp with duration people were on tane before noticing bad side effects.

I'll say one other thing about Liver and relationship with Accutane. One requirement and I think I speak for most people who've ever taken tane is that you must do a liver blood test whilst being on it, now we have to ask ourselves how did that requirement ever come about??
Were people taking it in the 80's and having major liver issues thus the medical community made it compulsory to protect future users of complications by making it compulsory to do a blood test??

And with that blood test ( mine was ok so I continued on it ) what if the test came back bad? I wonder how many people have had to stop due to undesirable liver results? Doctor says you must come off it now? How many have had this outcome?

Personally tane effects multiple organs and so maybe if you're into conspiracies, the whole liver focus whilst on tane is just a convenient medical distraction, a cover up for the fact that the biggest concern is not actually liver damage but brain damage - no one ever warned me about that little fucken gift, one that hangs around 20 plus years later.....

I know the medical community acts like health is complex, and it is in some areas, but in the macro sense it really isn't. The human body is very resilient, it can take quite a heavy toll. Years of bombardment by worse chemical substances such as ethanol with its free radical damage and such. So, if you think from a doctors perspective, theoretically, this drug in their mind can't cause the type of damage we are subjectively claiming.

I know I can get my eyes to show on a test some deterioration of rod function, my other visual symptoms of visual snow, tinnitus, afterimages, and even night blindness are somewhat subjective at the moment with current medical technology...

And the other various symptoms, that attribute to some sort of mild system wide inflammation that we have throughout the body/brain. Years of persistence, 8 years now, seems to be permanent.

I think what one user said about the hypothalamus and or pituatary glands being affected rings true with me. I just don't know how to get a doctor to go about looking in the right places...

@macleod

Yeah i had this problem with rod function deterioration. Red Letters were looking really funny (as if they were printed in 3D) when the background was black. It had to be a certain hue of Red to have this effect though. I also had Tinnitus for many years although this would last 2-5 seconds and hearing Tinnitus would mean that i just "crashed".

After each "crash" i could see that i was not feeling well and had several symptoms such as not being able to sleep well, having very negative thoughts, impotence etc.

I could also see that these Tinnitus events were getting more frequent as time was passing by. At first it was once a year, then twice, then once every two months, then monthly.

So my Goal was to stop these events in any way i could. I must have spent thousands of $$$ in supplements and trying various combinations to understand what was working and what was not.

Regarding the Hypothalamus Inflammation it is a possibility but this happens indirectly i think ( so i don't believe it is the cause according to my Theory).

Whatever i say are hypotheses, i am not a Medical professional. This is why i would like to have Researchers evaluate properly my hypotheses as these are generated by the Algorithms i use.

The Liver is responsible for the metabolism of Hormones, Neurosteroids, Toxins etc so if this process is disrupted then the body does not have the ability to use all of these Hormones, Neurosteroids, Lipids on the one hand and on the other hand Toxins are not able to be excreted properly.

So if Serotonin/Dopamine is not being metabolized properly the you will most likely feel anhedonia, bluntness of emotions, depression etc

You will see me writing many times the phrase "according to my Theory" but i am just making sure that everyone understands that it is a Theory and i am not making any sort of Claims.

https://selfhacked.com/?s=low+estrogen

http://www.prohealth.com/library/showarticle.cfm?libid=7564

Anyone had this test done?
Red Blood Cell Fatty Acids Analysis. Did any of you get small bumps on the back of upper arms?

http://lpi.oregonstate.edu/mic/other-nutrients/essential-fatty-acids

I have seen some of you mention DHA - feedback anyone?

@TrueJustice
I had to stop Accutane second course half way through
right around the time all these issues happened
due to alt ast liver enzymes sky high and triglycerides were 500

my liver enzymes were high from 2009-2011
they had no answers a biopsy was scheduled but never did it because side effects

now I'm told liver is healthy
ultra sound showed fatty

to this day
i have dry rashy flushed skin dry crusty mucus eyes
dandruff
cold hands feet insomnia anxiety OCD depression bdd

also weird thig two things

my facial hair growing under eyes and almost near nose cheek bones
and I get black marks on cheeks when flushed or hot
i can remove them with water or finger so not black heads

my skins a mess now and I've been juicing veggies fruits
dairy gluten wheat egg free diet 4 months

no relief
very dry
I exfoliate face daily and rub olive oil on it

stress doesn't help and anxiety

but clearly something is up

wether it's liver
sjorgens
execess vitamin a
not enough a
gut issues
thyroid
gland issues
hornones

23 minutes ago, hatetane said:

http://www.prohealth.com/library/showarticle.cfm?libid=7564

Anyone had this test done?
Red Blood Cell Fatty Acids Analysis. Did any of you get small bumps on the back of upper arms?

http://lpi.oregonstate.edu/mic/other-nutrients/essential-fatty-acids

I have sen some of you mention DHA - feedback anyone?

yes mate. I had the bumps on the back of my arms. They stayed for a couple of years post. Its a symptom of vit a deficiency, believe it or not.

Things that have flagged high or whatever since tane

1.cholesterol-250 was highest 220 now maybe 215?
2.tryglicerides-500-600 normal now
3.liver enzymes alt ast-not sure but very high now normal
4.fatty liver ultrasound need to recheck
5.thyroiditis ultra sound not sure what it is now
6.tsh was 5.70 now 1.90 normal
7.sleep apnea-not sure was 165 at the time now 135 and no large adenoids or tonsils and machine drys me up when I ttied
8.sicca syndrome
9.dry eye disease
10.had double vision out of no where sterbismus
11.mental issues
12.insomnia
13.dry skin rosacea like
14.raynaurds like hands feet
15.low zinc
16.low iodine
17.low normal dhea
18.low normal ferritin
19.low vitamin d
20.4 hour glucose test showed pre diabetic in 2010

Just wondering something
for all of us that look paler since it

could it be the fact we don't have acne all over face and oily skin?
do u guys sit inside all day like me? No movement

yes i've definitely noticed unusually pale skin over the years in photos(not all the time though) since accutane.
Also speaking of blood test, I have yet to find anything abnormal in the countless blood test ive had over the years. Minus the most recent low normal test I had for testosterone, and also this hit I had on a western blot blood test. Which leaves me wondering if people with neurologic symptoms,signs of inflammation or even gum disease would flag anything positive on this test. This isnt lyme exclusive, as the test states. This could be a false positive if I had a cold or something, but I dont have a cold. This test can cross react with certain viruses or other bacterial infections.
But wouldnt that be a hell of a coincidence If I also had lyme on top of taking accutane. Just wonder for people that have had bad side effects  for years and years if anything would pop up on this.  

note systemic lupus and periodontal disease are on here that could flag positives.

@guitarman01

Have you ever had any of these tests?

-Ceruloplasmin
-Serum Copper
-Serum Zinc
-Total Bile Acids (TBA)

2 hours ago, mariovitali said:

@guitarman01

Have you ever had any of these tests?

-Ceruloplasmin
-Serum Copper
-Serum Zinc
-Total Bile Acids (TBA)

Funny you should ask. Yes I have had extensive copper test and zinc test since the past year or so. bile acid test, not yet. So whats this you mention about the atp7b gene that came up in that post you linked to? atp7a and atp7b, i've learned quite a bit about it the past year or so. Multiple people on this forum were coming back with low copper numbers. low ceruloplasmin (as low as 15mg/dl I want to say) along with borderline low serum. But some of these people when you did the calculations were also coming back with elevated free copper at times. Range is 10-15. I can think of two people that had a level of 25 and 30. Not everyone has had abnormal results.

Copper is capable of serious damage to the body. when you look at Wilson's disease the neurological or liver damage is enough to kill a person.
Yet copper is also needed for tissue repair. ceruloplasmin can be elevated if there is tissue damage or inflammation. ceruloplasmin can also be elevated to protect copper from damaging the body, at the expense of neurologic function.
There is plenty of copper in the normal diet 2 to 5mg per day depending on what you eat. So people coming back with low or borderline low numbers where is the rest of the copper going?
What are your thoughts @mariovitali?
Maybe copper is a non-issue. but ive been f'd up since taking copper, been getting alot of stinging nerve pains.
but I look at my copper numbers and I dont see much abnormal.

Ceruloplasmin 24.8 mg/dL 16.0 - 31.0 01 JUNE 2016
Copper, Serum 96 ug/dL 72 - 166 02

Ceruloplasmin 24.4 mg/dL 16.0 - 31.0 01 AUGUST
Copper, Serum 95 ug/dL 72 - 166 02 Detection Limit = 5
Zinc, Plasma or Serum 100 ug/dL 56 - 134 02

Uric Acid, Serum Uric Acid, Serum 6.4 mg/dL 3.7 - 8.6 01 Please Note: 01 Therapeutic target for gout patients: <6.0 LDH 128 IU/L 121 - 224 01 Ceruloplasmin 23.0 mg/dL 16.0 - 31.0 01 Copper, Serum 91 ug/dL 72 - 166 02 Detection Limit = 5 Zinc, Plasma or Serum 58 ug/dL 56 - 134
(my zinc level dropped pretty low here, not sure why) SEPTEMBER

HERE is when I started taking Zinc and i mean like (150mg a day), When I thought the copper I took might be a problem, you can see it lowered my copper numbers rather quickly, this would make you think excess copper storage is not going on. But if you look at my very last test the copper numbers come right back into range along with a newly raised Ceruloplasmin.
Ceruloplasmin 20.7 mg/dL 16.0 - 31.0 01
Copper, Serum 78 ug/dL 72 - 166 02 Detection Limit = 5
Zinc, Plasma or Serum 90 ug/dL 56 - 134 02 OCTOBER

This is my very last copper test. It came right back into my average range along with a newly higher Ceruloplasmin (I had quit taking zinc)
Ceruloplasmin 30.2 mg/dL 16.0 - 31.0 01
Copper, Serum 95 ug/dL 72 - 166 02 Detection Limit = 5
Zinc, Plasma or Serum 74 ug/dL 56 - 134 JANUARY

For the record I even did a 24hr copper urine test which came back undetectable for copper. This is obviously below normal range. But urine test are sometimes inaccurate. Obviously I got plenty of copper flowing through me.

So yea ive had some copper tests...

@guitarman01

Since everyone is different and everyone usually chooses a specific regimen in order to feel better, the answer to your question of course is "it depends".

I have seen a lot of people having Low ceruloplasmin and High Copper (which makes sense). There were others that had low ceruloplasmin and low copper but they were supplementing with Zinc (which is a Copper antagonist). Others had the same combo (Low Ceruloplasmin, Low Copper) without any supplementation.

The thing is, that a personalized regimen is required IMHO. One that is aimed in closing all the "holes" that create Oxidative Stress. I mean, if there was one regimen that would work for everyone, i am sure it would have been found by now.

Continuing on the Copper example, you might have an ATP7B1 SNP or some other SNP that raises your chances for Wilson's Disease or impaired Copper handling/metabolism. You may also have Bile metabolism problems so even if you don't have Copper problems, the existing Copper cannot be eliminated through Bile efficiently making Copper toxic to your Liver, Brain and other Organs.

I hope this example makes sense : You have to look at DNA Data, identify problems along several Pathways and create the necessary environment for minimizing Oxidative Stress, Inflammation and Excitotoxicity. Only then your body can recover.

This is the reason for mentioning Total Bile Acids. If they are elevated then that means there is Cholestasis (which is another major source of problems).

The subject of copper after tane is very interesting, I remember working with a kinesiologist who got me to do a hair mineral analysis about 6 years ago - sure enough the one finding was high copper!!

He put me on Zinc, Moly Zinc, Manganese, I did all that but never felt any better.

Then there was the whole debate on this forum that rather than eliminating copper we should be supplementing it. Never had the courage to do that but it reminds me of doctors who put tane patients on Vit A to eliminate side effects - fight fire with fire scenario.

Anyone tried taking copper supplements and noticing anything good or bad??

The oxidative stress in my body is rampant- my varicose veins and spider veins are out of control but nothing works to fix it. Curcumin and Bromelain - those things haven't done a thing to help with inflammation or healing.

4 hours ago, TrueJustice said:

The subject of copper after tane is very interesting, I remember working with a kinesiologist who got me to do a hair mineral analysis about 6 years ago - sure enough the one finding was high copper!!

He put me on Zinc, Moly Zinc, Manganese, I did all that but never felt any better.

Then there was the whole debate on this forum that rather than eliminating copper we should be supplementing it. Never had the courage to do that but it reminds me of doctors who put tane patients on Vit A to eliminate side effects - fight fire with fire scenario.

Anyone tried taking copper supplements and noticing anything good or bad??

The oxidative stress in my body is rampant- my varicose veins and spider veins are out of control but nothing works to fix it. Curcumin and Bromelain - those things haven't done a thing to help with inflammation or healing.

Your copper levels were in range. I'd leave it at that. I'd be careful about alot of supplements with that ulcerative esophagitis you got going on. I'd want to make sure that's healed first. Could take as long as 1 to 4 months based on healing rates and if it's reaching your throat it could take even longer.

My zinc and iodine were extremely low
rheum said no wonder my skins flaky rashy and acne still
put me on diet and supplement
kelp 500mg
zinc picolante 30mg

noticed no difference
although my skin has been flaking more on the sides since I've run out of zinc
either that or it's the excess a I get from juicing

I do remember a doctor wanted to know if I had excess copper back in 2009 and it was normal

only things low right now
are zinc iodine D
and dhea

my d levels were 7 before after tane
now they are 34 and that's with 2500IU A DAY

I should mention my a levels were mid range normal
however the retinol
was like 0.1
range 0.0-0.5 so idk

49 minutes ago, Nemesisbrady said:

My zinc and iodine were extremely low
rheum said no wonder my skins flaky rashy and acne still
put me on diet and supplement
kelp 500mg
zinc picolante 30mg

noticed no difference
although my skin has been flaking more on the sides since I've run out of zinc
either that or it's the excess a I get from juicing

I do remember a doctor wanted to know if I had excess copper back in 2009 and it was normal

only things low right now
are zinc iodine D
and dhea

my d levels were 7 before after tane
now they are 34 and that's with 2500IU A DAY

I should mention my a levels were mid range normal
however the retinol
was like 0.1
range 0.0-0.5 so idk

Brady, you need to consider taking quality Iodine like Lugols ornascent + all the co-supplements used with Iodine therapy.. 30mg zinc picolinate/day is waay too much - when taking Zinc long term aim for 10-15mg every 3 days. Also avoid ALL copper supplements also those who contain Zinc (like 20mg zinc, 2mg copper supplements which a popular now a days). Copper is toxic in supplement form esp. to us post accutane.

also Vitamin D I wouldn't experiment with in supplement form since a lot of us people react badly to all fat soluble vitamins in their syntehtic form i.e supplements..

@washer I know I have to talk to nutritionist and rheum about this
they put me on that zinc
but I don't get outside for vitamin d
so I kind of have to at the moment
also I will bring up the iodine thank u

1 hour ago, Washer said:

Brady, you need to consider taking quality Iodine like Lugols ornascent + all the co-supplements used with Iodine therapy.. 30mg zinc picolinate/day is waay too much - when taking Zinc long term aim for 10-15mg every 3 days. Also avoid ALL copper supplements also those who contain Zinc (like 20mg zinc, 2mg copper supplements which a popular now a days). Copper is toxic in supplement form esp. to us post accutane.

also Vitamin D I wouldn't experiment with in supplement form since a lot of us people react badly to all fat soluble vitamins in their syntehtic form i.e supplements..

Just wondering where did you get the idea of such conservative recommendations to Zinc?

1 hour ago, Nemesisbrady said:

@washer I know I have to talk to nutritionist and rheum about this
they put me on that zinc
but I don't get outside for vitamin d
so I kind of have to at the moment
also I will bring up the iodine thank u

Read up on ultraviolet lamps - they can produce vitamin d so you won't have to take the D supplement. The reason why I'm against supplementing with fat soluble vitamins such as A, E and D is because I've heard from a lot of post-accutane people that they react badly to synthetic fat soluble vitamins and it also makes a lot of sense to me that we should avoid synthetic fats since Accutane (from my perspective) is engineered in a way that can change the way you absorb and store fat.

If you want to experiment with synthetic fats such as vitamin A supplements take something like Bile acids, chinese bitters, UDCA, TUDCA, various chinese liver tonics, Liv52, apple cider vingear or lots of fresh beetjuice since it helps your body break down fat. Coconut Oil is the most safe fat for us since it doesn't require bile to be digested. The safest route is of course to stay away from all vit a, d, e and k supplements.

I've never had problems with digesting fats myself, but I know some people on here have like Joseph, Chico etc.

Also be careful what your doctors, nutrionists etc. want to put you on. Even if you explain it to them they won't understand how badly Accutane has affected your body and made it extremely hypersensitiv towards everything that stimulates your organs. When you've beenunfortunateto get hit with side effects after ingesting Accutane the best people to seek for advice are us here on this forum (and the other post-accutane forums, but they are kinda dead now a days). Some people on here have been trial and erroring for years on end (me included) so we know excatly how different foods and supplements affect us - be it good or bad.

http://nhsjs.com/2014/effect-of-ultraviolet-led-radiation-on-vitamin-d-production-in-human-skin-a-novel-device-for-vitamin-d-synthesis/

18 minutes ago, mikez said:

Just wondering where did you get the idea of such conservative recommendations to Zinc?

Never been a fan of mega-dosing it at 30-60mg /day. I've done it in the past and I felt worse on it esp. in terms of sunsensitivity. It was when I was early in my Iodine treatment though so I'll prob. tolerate it better now, but i'll keep off it at least for some years.

Thank u for providing the link for that lamp and info
I know what u mean
its hard to have people understand who haven't went thru this
how do you know if you're absorbing fat or not ?