My final post , don't insult my intelligence. And as always good luck to all isotretinoin sufferers.

1 hour ago, Gladiatoro said:

My final post , don't insult my intelligence. And as always good luck to all isotretinoin sufferers.

I appreciate your input to this topic over the years. Before you go, have you improved in any way? Did you find something that worked for you, even if you cant explain why?

3 hours ago, Kynarr said:

I'm followed by an Andrologist, but I inject myself every week. SubQ is super easy. No pain, no scars. I use 27 gauge needles. I just pin it in my belly and inject. It's stupid easy. You can probably check some videos on youtube if you need, or just get help from a nurse somewhere for your first time. There's really no worry about it at all. It's as easy as it gets. I prefer it to having to apply gel to my arms every morning.

Just wondering, were you diagnosed with hypogonadism ? What were your T levels at?

2 hours ago, Gladiatoro said:

My final post , don't insult my intelligence. And as always good luck to all isotretinoin sufferers.

I love your quotes and words over the years. It always makes me smile, I do however think in a macro sense that the anti vaccine and anti western medicine positions hurt us and this topic and make us look kind of like hippies. I personally do not believe in the egregious amounts of vaccines given to newborn infants, there is a such thing as "herd immunity" and so for everyone to be required to get them, as if its candy, is crazy. Especially at such a young age. Everyone is made up of different dna and no doubt in my mind some of them develop adverse effects. Just common sense that most people should agree on.

1 hour ago, MonsterDiesel said:

I appreciate your input to this topic over the years. Before you go, have you improved in any way? Did you find something that worked for you, even if you cant explain why?

One word H20 , good luck. Sorry let me be specific Maunawai water the purest water on the planet google it , pure spring mountain water actually has memory in other words your body cells communicate with water molecules.

Not sure where this came from, but there is a ton of information here. Alot of this has already been looked into over the years. Looking at some of this and the incredibly strong similarities, makes you think some of what Accutane did might not even be specific to Accutane. Researchers time and time again are saying there is a trigger to this, a event, a virus, a infection, a drug.

This person or persons just collected a ton of information and put it in one spot. Its not all nice and neat, but there is alot of information.

Chronic Fatigue Syndrome (ME,CFS or CFIDS) and Fibromyalgia ...

11 minutes ago, guitarman01 said:

Not sure where this came from, but there is a ton of information here. Alot of this has already been looked into over the years. Looking at some of this and the incredibly strong similarities, makes you think some of what Accutane did might not even be specific to Accutane. Researchers time and time again are saying there is a trigger to this, a event, a virus, a infection, a drug.

Chronic Fatigue Syndrome (ME,CFS or CFIDS) and Fibromyalgia ...

charles_w.tripod.com/cfs.html

There is anecdotal evidence thatIsotretinoin(Accutane, Roaccutane), which ...... It is themenaquinoneform of vitamin K that is involved, not the phylloquinone...

There is anecdotal evidence that Isotretinoin (Accutane, Roaccutane), which are medicines used for acne, can bring on CFIDS.

One positive circumstance in this series of miserable symptoms is that quite a few report that they never get colds. This could be because part of the immune system is chronically activated.

(Colinboko talked about excess hair growth in unusual spots as a immune response. That makes sense.)

damage to the hypothalamus of the brain
a region of the forebrain below the thalamus that coordinates both the autonomic nervous system and the activity of the pituitary, controlling body temperature, thirst, hunger, and other homeostatic systems, and involved in sleep and emotional activity.

Yup. Can totally vouch for the whole never getting sick thing. I remember somewhere on a propecia help thread there was some dude who said he caught a minor cold after years of suffering and everything went back to normal for like 48 hours. I strictly remember his post also talking about how his muscles re-firmed up and this flabby/jello like muscle TOTALLY went away. Does anyone else notice this? I'm like not overweight by any means but I'm like saggy/jello-y

from the same website:
There is evidence of disruption to calcium ion transport in the muscle of ME/CFIDS patients
Ive also mentioned this in the past that might be involved as well,Involuntary muscle contraction.

Tetany - Wikipedia

This could even be muscle tension in the brain. This could be mistaken for atrophy. This is what could also possibly cause head pressure/headaches.

This is showing what accutane can do is not gender specific.
But I get some male hormone impact would be more devastating in guys, but at the same time, this does not seem to solve the Erectile dysfunction in some. Or what almost seems to be some sort of nerve or artery damage. which I guess that could be both. lack of blood flow can damage the nerve. There has been actual visual signs of damage in some.

New Warnings With Accutane Use - ABC News

@guitarman01

On 06/07/2017 at 8:38 AM, guitarman01 said:

http://www.dysautonomiainternational.org/page.php?ID=124

If you check out the video on this link (from one of just a few expert neurologist on this subject, another residing at mayo clinic in rochester (that's who I contacted) at about the 50.30 mark they talk about impaired mental function. Mainly executive decision making. They also talk about finding other acetylcholine antibodies. They are talking about changing blood pressure affecting and taking a toll on the brain( This is lowered blood pressure upon rising, This can be made worse by eating or drinking alot where more blood pools in the gut). Person's improve with various types of immune therapy. This includes IVIG, plasma exchange, Rituxan and corticosteroids.

Another takeaway thats a possibility,
antibody mediatedencephalopathy. Meaning altered brain function or structure.

immunotherapy improves both autonomic and cognitive function.
The AChR Ganglionic Neuronal Ab number responds to therapy, meaning it decreases.
So if this was to respond to vitamin k2 that would sure be something.
But Related meaning is k2 the agonist or antagonist for these diseases. does k2 suppress tyrosine kinase for example?

Speaking of tests. have you had any tests that have been significant?
Have you had a fibroscan?
you've mentioned copper, what are you looking at here?
Have you noticed improvement in any testing since feeling better?

I was not able to have a Fibroscan yet as i have recently moved to a new country. Regarding the tests you asked, i was once hypothyroid, with low levels of Testosterone and found to be on a pre-diabetic state.

All gone now, my endo could not believe her eyes when we went though the tests as she has known me (and my problems) for years.

Elevated copper can be a sign of Liver disease and i was found to have it elevated. As also discussed, a close relative of mine was found to have Liver fibrosis stage 3 (=F3) without any symptoms or elevated liver enzymes. The hepatologist said that he is not sure since there are no signs of Liver disease. What an idiot...he did say however that this should be pursued further and suggested that this person goes to a Lab that specialises in Liver issues and have the Fibroscan for a second time.

F3 is one stage before Liver cirrhosis.

1 hour ago, Colinboko said:

1 hour ago, guitarman01 said:

Not sure where this came from, but there is a ton of information here. Alot of this has already been looked into over the years. Looking at some of this and the incredibly strong similarities, makes you think some of what Accutane did might not even be specific to Accutane. Researchers time and time again are saying there is a trigger to this, a event, a virus, a infection, a drug.

Chronic Fatigue Syndrome (ME,CFS or CFIDS) and Fibromyalgia ...

charles_w.tripod.com/cfs.html

There is anecdotal evidence thatIsotretinoin(Accutane, Roaccutane), which ...... It is themenaquinoneform of vitamin K that is involved, not the phylloquinone...

There is anecdotal evidence that Isotretinoin (Accutane, Roaccutane), which are medicines used for acne, can bring on CFIDS.

One positive circumstance in this series of miserable symptoms is that quite a few report that they never get colds. This could be because part of the immune system is chronically activated.

(Colinboko talked about excess hair growth in unusual spots as a immune response. That makes sense.)

damage to the hypothalamus of the brain
a region of the forebrain below the thalamus that coordinates both the autonomic nervous system and the activity of the pituitary, controlling body temperature, thirst, hunger, and other homeostatic systems, and involved in sleep and emotional activity.

Yup. Can totally vouch for the whole never getting sick thing. I remember somewhere on a propecia help thread there was some dude who said he caught a minor cold after years of suffering and everything went back to normal for like 48 hours. I strictly remember his post also talking about how his muscles re-firmed up and this flabby/jello like muscle TOTALLY went away. Does anyone else notice this? I'm like not overweight by any means but I'm like saggy/jello-y

+1

look uo my history, without knowing the other posts I reported the same thing. When I have a cold my brain fog completely goes away. I get my energy levels back again.

48 minutes ago, mariovitali said:

@guitarman01

I was not able to have a Fibroscan yet as i have recently moved to a new country. Regarding the tests you asked, i was once hypothyroid, with low levels of Testosterone and found to be on a pre-diabetic state.

All gone now, my endo could not believe her eyes when we went though the tests as she has known me (and my problems) for years.

Elevated copper can be a sign of Liver disease and i was found to have it elevated. As also discussed, a close relative of mine was found to have Liver fibrosis stage 3 (=F3) without any symptoms or elevated liver enzymes. The hepatologist said that he is not sure since there are no signs of Liver disease. What an idiot...he did say however that this should be pursued further and suggested that this person goes to a Lab that specialises in Liver issues and have the Fibroscan for a second time.

F3 is one stage before Liver cirrhosis.

Havent been active on the forum for a while. What did you do that fixed it?
sorry if you said it a million tines already

@Walden Rev

In a nutshell the theory goes like this :

Accutane, Finasteride, Methotrexate, Ciprofloxacin (and several other potentially hepatotoxic drugs) disrupt Liver function to already susceptible individuals. Apart from medications it appears that other types of Liver stressors such as EBV, impaired bile acid metabolism, or even prolonged stress also disrupt Liver function. The body then falls into a kind of vicious circle of oxidative stress. Ultimately we are taking about a kind of chronic liver disease that may or may not show elevated Liver enzymes.

Since the Liver is important for metabolism and detoxification of several important substances needed by the human body, several problems occur.

The solution (always according to my theory) is to provide a personalised regimen (which includes Vitamins, minerals and avoidance of certain foods and medications) based on ones SNPs to effectively help the Liver to recover.

See also here :

[removed]

On 7/9/2017 at 1:10 PM, mariovitali said:

@Walden Rev

In a nutshell the theory goes like this :

Accutane, Finasteride, Methotrexate, Ciprofloxacin (and several other potentially hepatotoxic drugs) disrupt Liver function to already susceptible individuals. Apart from medications it appears that other types of Liver stressors such as EBV, impaired bile acid metabolism, or even prolonged stress also disrupt Liver function. The body then falls into a kind of vicious circle of oxidative stress. Ultimately we are taking about a kind of chronic liver disease that may or may not show elevated Liver enzymes.

Since the Liver is important for metabolism and detoxification of several important substances needed by the human body, several problems occur.

The solution (always according to my theory) is to provide a personalised regimen (which includes Vitamins, minerals and avoidance of certain foods and medications) based on ones SNPs to effectively help the Liver to recover.

See also here :

[removed]

Ok, good post with focus on liver but then I get confused because the last few pages if nothing else point to treating hormones/testosterone so you can clearly see how we get derailed and confused.

Before I run out and get more hormones checked would you suggest drop that idea and focus on liver or would you suggest that many of us might have several issues all going on simultaneously thus look at liver but don't disregard looking also at testosterone levels??

The problem with forum is from time to time we get people posting really good info on one thing and then someone comes along the next minute with equally good info in a convincing manner on a totally different area and it creates confusion on where one should go next....

1 hour ago, TrueJustice said:

Ok, good post with focus on liver but then I get confused because the last few pages if nothing else point to treating hormones/testosterone so you can clearly see how we get derailed and confused.

Before I run out and get more hormones checked would you suggest drop that idea and focus on liver or would you suggest that many of us might have several issues all going on simultaneously thus look at liver but don't disregard looking also at testosterone levels??

The problem with forum is from time to time we get people posting really good info on one thing and then someone comes along the next minute with equally good info in a convincing manner on a totally different area and it creates confusion on where one should go next....

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.

Any attempt to boost/alter in any way hormones is futile simply because you are treating the symptoms and not the cause. Here, the root of the Tree is the Liver and body functions are the leaves. Question : If the root cannot absorb nutrients, what will happen to the branches of the tree? This is the best way i can explain the whole picture. Treat the root and the rest will happen.

Hope this makes sense.

Excellent- well explained!!

and just so I can eliminate once and for all, doing the Moritz Liver flushes in our case is a waste of time?? I mean his book is pretty convincing that people need to do these deep purifying cleanses and whilst for some ( outside of Accutane ) this procedure might yield results, would you agree that for us though it's not that useful?

Currently I'm on Glutathione- I just looked it up again and I think bloody hell this has got to be the product, it protects liver, cleans up metal poisoning, they even suggest for alcoholics to use it but after 2 weeks I'm feeling nothing!!?

Where do I start with cleaning up liver? Besides taking any of the common liver supplements i.e milk thistle, turmeric etched etc??

5 minutes ago, TrueJustice said:

Excellent- well explained!!

and just so I can eliminate once and for all, doing the Moritz Liver flushes in our case is a waste of time?? I mean his book is pretty convincing that people need to do these deep purifying cleanses and whilst for some ( outside of Accutane ) this procedure might yield results, would you agree that for us though it's not that useful?

Currently I'm on Glutathione- I just looked it up again and I think bloody hell this has got to be the product, it protects liver, cleans up metal poisoning, they even suggest for alcoholics to use it but after 2 weeks I'm feeling nothing!!?

Where do I start with cleaning up liver? Besides taking any of the common liver supplements i.e milk thistle, turmeric etched etc??

Try TUDCA.
buy some empty pills because the taste is horrific.
dont expect magic in one week but this will help your liver quite a bit (repaired my undigested stool)

Honestly I don't think we have something permanent, I took high doses of accutane and finasteride long term but my symptoms have improved A LOT.
I remember at my worst (2014-2015)I couldn't even put a sentence (in my native language) together without taking long pauses, I forgot all words, I couldn't even read because had to stop every other word to check the meaning of simple words, I couldn't concentrate for a minute straight, I couldn't even watch a video or a moviebecause every 2-3 minutes I had to hit the pause button because I couldn't concentrate on it for longer,I was a total mess. I seriously thought I developed Alzhaimer.

Nowadays I don't have these problems anymore, even though I'm not 100% my old self. In a normal day I'm pretty much back to normal, only when I'm very stressed I experiment the problems I used to such as lack of vocabulary, inability to focus, short term memory problems ecc
Even my sleep improved, back in my worst days I needed 10-11 hours of sleep, now I'm back to 7:30-8 hours and I'm super good.

So, since I improved so much I don't think these drugs cause something permanent, infections or rare diseases, I thing it's some imbalance, mainly hormonal that takes time to resolve.
How is it possible that when I'm super stressed (or depressed) the problems get much worse almost like what I experienced back in 2014-2015? Some hormones must be at play here.

8 minutes ago, Walden Rev said:

Try TUDCA.
buy some empty pills because the taste is horrific.
dont expect magic in one week but this will help your liver quite a bit (repaired my undigested stool)

Yeah tried it but nothing, I mean I'm not saying I was just on it for a week - I gave it some time but got nothing?

With the liver flushes, first and third absolutely saw those green putrid stones come out, fourth and fifth got nothing which in a way is good as perhaps I passed all stones that were there BUT the whole idea of such a cleanse is to feel energised and revitalised I would think but I felt no different??!

stopped after 5....

Oxidative stress and unfolded protein response - those terms often come in rosacea studies ( my main side ) . Did some liver flushes in the past too, did not see stones but mostly done them without drinking magnesium stuff.

Guys,

Please don't do any Liver flushes i believe they do more harm than good.

I just talked to a woman with CFS. Well within the pattern. She had an incident of Liver disease when she was younger and her father had one also. She has Fibro and Chronic Fatigue at present.

@TrueJustice
I took TUDCA for over 7 months. A typical dose is 750 mg per day. However i would first look at specific SNPs that warrant its use but as a Liver protectant it sure is an option.

@SimpleMutton

You are one of the lucky ones i believe. Your Liver is able to compensate. I also felt better 6 months after my initial crash but after a year, symptoms have started again.

16 hours ago, PmcHeal said:

Thanks for the reply.Do you know the video [8 tips for reversing accutane side effects] on youtube, what studies are they reading to come to the conclusion that accutane is still stored in the body.

They are coming to their own conclusions or making some assumptions (based on research) in that video. What is sort of shocking is with all the adverse effects possible during treatment, there hasnt been any long term follow up studies after treatment. Not one.

Ive seen one study I posted recently that may indicate excess storage of accutane that resembled vitamin a toxicity is possible.
So if someone got a fibroscan and it was abnormal, I'd definitely show them this study.
This person did have elevated liver enzymes and a enlarged liver though, indicating there was a problem.

Ultrastructural findings in the liver due to long-term retinol (isotretinoin) treatment. Significance of the perisinusoidal (Ito) cells].

https://www.ncbi.nlm.nih.gov/pubmed/14978883
Electron microscopic examination revealed changes characteristic of vitamin A toxicity: hyperplasia of the perisinusoidal (Ito) cells with evidence of their activation and transformation, increased storage of lipids and vitamin A, perisinusoidal fibrosis, damage of the sinusoidal wall, partial necrosis in hepatocytes and an increased number of lysosomes, megalysosomes and smooth endoplasmic reticulum (SER), the signs of cholestasis as well as an increased number of Kupffer cells in the lobules etc. Histochemical examination showed a high content of vitamin A in the transitional (Ito) cells and in hepatocytes

17 hours ago, MonsterDiesel said:

Has anyone tested free and total carnitine levels in blood?

no. I see walk-in lab offers this though and its not too expensive.

4 hours ago, mariovitali said:

You are one of the lucky ones i believe. Your Liver is able to compensate. I also felt better 6 months after my initial crash but after a year, symptoms have started again.

This isn't good to hear, so your recovery was only temporary and now you're experiencing symptoms once again?

5 hours ago, mariovitali said:

Guys,

Please don't do any Liver flushes i believe they do more harm than good.

I just talked to a woman with CFS. Well within the pattern. She had an incident of Liver disease when she was younger and her father had one also. She has Fibro and Chronic Fatigue at present.

@TrueJustice
I took TUDCA for over 7 months. A typical dose is 750 mg per day. However i would first look at specific SNPs that warrant its use but as a Liver protectant it sure is an option.

@SimpleMutton

You are one of the lucky ones i believe. Your Liver is able to compensate. I also felt better 6 months after my initial crash but after a year, symptoms have started again.

It sounds like you had some gastric motility issues going on yourself when you said you got to the point where you couldnt eat. Tanedout posted a study about Propecia affecting the peripheral nerves, maybe its affecting the autonomic nervous system as well. Feel free to tell the folks on the other forums you frequent, I tested positive for Achr ganglionic neuronal antibodies. There might be some interest in this. I'd like to spread the word if this could possibly be drug induced. There are multiple scenarios here, but gut dysfunction or altered microbiota could be a factor as well that could have a snowball effect. There are studies to back this up. Did the problem originate from the liver or gut? Was there an autoimmune response or just autoimmune like?
Gut dysmotility might be likely to lead to SIBO, which can lead to a host of things in itself. What's the hierarchy?
Testings is the only way to shed more light on this.

You were doing the best you could to treat the liver taking high dose TUDCA and Choline(choline could be antagonistic if found to have antibodies though) and it wasn't enough, or it wasn't "it"
Now you're taking high dose epsom salts to support motility and im not sure where k2 falls into all of this.
Im looking at k2 again taking 360mg mk7 jarrow brand, but it seems to be slowing down my motility, but il give it more time. There is a recent study showing k2 deficiency is possible with SIBO. The science around k2 does make sense, or id like to think it does. But basically in all of this, the question is always whats what? if that makes sense.

I've talked to two individuals, one of whom was active in this forum but is no longer (Tom87) . He is doing a lot better because of liver flushes and water/coffee enemas. I talked to another woman via Facebook who completely healed herself through liver flushes (and diet, supps, etc.). Just putting it out there because I am just starting my journey with fasting, enemas, and liver flushes and DO believe they will do much for me.