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Repairing the long-term damage from Accutane

 
MemberMember
75
(@colinboko)

Posted : 10/05/2017 8:05 pm

12 minutes ago, TrueJustice said:

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!!?

Are you still having hair loss? My hair is still falling out body wide besides chest and beard hair (which makes sense because they're androgenic hair)

I'm a year post and it's STILL shedding.... and hasn't slowed in the slightest

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MemberMember
1804
(@truejustice)

Posted : 10/05/2017 8:42 pm

40 minutes ago, macleod said:

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.

To look at hippocampus what test is that specifically? MRI?

36 minutes ago, Colinboko said:
Are you still having hair loss? My hair is still falling out body wide besides chest and beard hair (which makes sense because they're androgenic hair)

I'm a year post and it's STILL shedding.... and hasn't slowed in the slightest

For me, my thick curly/wavy hair post tane is now thin and very dry with grey coming out more every week. Hair loss - I think I'm ok at this stage...

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MemberMember
75
(@colinboko)

Posted : 10/05/2017 9:21 pm

34 minutes ago, TrueJustice said:
To look at hippocampus what test is that specifically? MRI?
For me, my thick curly/wavy hair post tane is now thin and very dry with grey coming out more every week. Hair loss - I think I'm ok at this stage...

I guess I just missed the bus on this whole "dryness" thing...

My hair is definitely more dry than pre tane but not unmanageable. And my face is just normal now. Not overly dry.

I kind of broke down the stages of my accutane journey

at first I got really oily as it purged

then I got significantly less oily and my lips got chapped/dry boogers (by this time no new pimples were forming but I still had old acne on my face)

Then this is where everything went down hill in my opinion... the acne on my face started to clear up (not because of the sebum reduction but because my immune system started ramping up) and then BAM woke up on the first day of junior year of college feeling like I was hungover and it has just gotten worse from there.

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MemberMember
37
(@mariovitali)

Posted : 10/05/2017 10:35 pm

@TrueJustice

You said :

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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...

Perhaps we can also look at this with another view. If the root of the Tree (=Liver) has problems, all of the branches of the Tree (Hormones, Neurosteroids, Immune function, Autophagy, etc, etc) will have problems. Unfortunately, it also appears that in the long run of this, the Pancreas is also involved.

@tanedout

Some of the people (3) were also found to have fatty Liver. Fibroscan outputs also the amount of Fat as this is found to the Liver.

@guitarman01

We have a vicious cycle going on. Because of impaired Liver function (better say compensated) the body ceases to have satisfactory Oxidative stress protection and as a result a multitude of issues begins :

-Autoimmunity
-Impaired Metabolism of Hormones
-Impaired Detoxification
-Impaired Phagocytosis
-Impaired Cholesterol Metabolism

Remember : The root has a problem and then all hell breaks loose.

A second independent Researcher (who has CFS) has contacted Mark Davis at Stanford. This Guy also believes that the LXR Receptor and Autophagy is at the heart of this and ultimately the Liver. I just got an email from him saying that he is constantly being feeling better by supporting the Liver and a few other things which he didn't say.

I think we are getting there Guys. They will listen.

I would also like to commend Dr David Healy at RxISK. He was the only one that replied, listened, asked questions and considered the information he was presented with. I am not saying that he accepted what i said but he considered (and still is) the information he was presented with.

A True Scientist.

Like This

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MemberMember
299
(@macleod)

Posted : 10/05/2017 11:35 pm

3 hours ago, TrueJustice said:
To look at hippocampus what test is that specifically? MRI?
For me, my thick curly/wavy hair post tane is now thin and very dry with grey coming out more every week. Hair loss - I think I'm ok at this stage...

I believe SPECT, but I've had no luck with neurologists as of yet getting anything meaningful done.

I think it's a hypermetabolism effect (for me at least) which would explain everything from the sleep disturbances, to the digestive distress, delayed wound healing. just all of the timing a bit off.

As far as the hair, same here man. This is due to the androgenic nature of this 5-AR inhibitor.

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MemberMember
1804
(@truejustice)

Posted : 10/05/2017 11:42 pm

2 minutes ago, macleod said:
I believe SPECT, but I've had no luck with neurologists as of yet getting anything meaningful done.

As far as the hair, same here man. This is due to the androgenic nature of this 5-AR inhibitor.

And for me more body hair not less, hair popping up on neck and shoulders like an old guy you see at the beach- well maybe not as hairy as some but it's still unwanted hair and that speaks volumes about what you said previously with getting things that a 60-70 year old version of myself would get!!!

Eye floaters - that's normally an age thing, infected nails and varicose veins etc, again I'm getting all these things 30-40 years before I should!!!!

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MemberMember
75
(@colinboko)

Posted : 10/06/2017 1:24 am

1 hour ago, TrueJustice said:
And for me more body hair not less, hair popping up on neck and shoulders like an old guy you see at the beach- well maybe not as hairy as some but it's still unwanted hair and that speaks volumes about what you said previously with getting things that a 60-70 year old version of myself would get!!!

Eye floaters - that's normally an age thing, infected nails and varicose veins etc, again I'm getting all these things 30-40 years before I should!!!!

My arm, leg and pubic hair fall out reaaaally easily. Was this not the case with you?

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MemberMember
0
(@abi72)

Posted : 10/06/2017 6:32 am

17 hours ago, ACCUiTy_drANE said:
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.
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.
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 do think that anyone who has the means should get testing done.
Sure, we are yet to find anything meaningful as yet but constant and more expansive testing has to be involved.

Anyone had progesterone tested via saliva?
I think that there are things that people are trying that is sometimes helping but the info just isn't being shared in the right way.

Anyone with money donate to the Rxisk competition?
I seen many times on this forum how we need medical researchers on our side - well this is your opportunity to try and get
scientist interested in our cause.
By the way - I think you can ask Dr Healy specifically to direct your donation to accutane research only - that's my understanding anyway.
However - the consensus is is that if we find a cure for one we will find a cure for all 3 conditions.

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MemberMember
0
(@abi72)

Posted : 10/06/2017 6:55 am

11 hours ago, Colinboko said:
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.

We know for sure that T is diminished regardless that GP's dismiss it - 17 year old boys do not have T levels of men in their 60's even if you GP
says it's within range.
I can assure you that everyone having a full hormonal panel test will show up abnormalities but majority of doctors can't/won't interpret the result throughly enough.
Remember we already know that most people will be low T, abnormal E, abnormal Cortisol and low D - to name but a few!

so we do need to crack on with testing and sharing the results.
Progesterone and DHEA (saliva) are 2 to test going forward.
Anyone with sexual sides been brave enough to have sperm tested for fertility given that FSH and LH are also low for may accutane victims.
I am happy to collect this data to pass on to Dr Healy - to be given to researchers - if anyone wants to share their results thus far.

11 hours ago, TrueJustice said:

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!!?

Progesterone and DHEA. Full hormone panel test to include adrenals etc - most basic test which I am sure most will
have had by now. The first two are more interesting though as research is really pointing to reduced P

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MemberMember
15
(@nemesisbrady)

Posted : 10/06/2017 4:06 pm

My last things im doing

endo
*follow up injections for the cortisol
(hopefully find answer why high cortisol
high estirgen t levels high iodine
erectile issues and more)
*pituatry mri
*ask about pheocromocytoma and carcinoid tumor
*saliva urine 24 hour test
*ask bout his iodine and tsh and history thyroiditis
*liver ultrasound see if fatty liver gone and told congested
*ask about absorbing fat
*vitamin a levels re check
*vitamin d check

Rheum
*follow up rheum find out why high igg4 and speckled ana

Allergist
*treatment for hives without drying me more

derm
*maybe skin biopsy lupus or Rosacea or whatever

if all that's fine and nothing

phase two

*lipiflow for eyes
*blephraplasty under eye bags
*v beam and creams
*icl for eyes or contacts some how
*eye plus and restasis again

*phase 3
*load up on ssri and mad meds

lifestyle changes to make
*bed early
*up early
*sun
*lift
*eat more
*drink more
*no fap
*maybe add back dairy

if all that fails
drink the pain away
maybe do drugs

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AccuNate, macleod, AccuNate and 3 people reacted
MemberMember
75
(@colinboko)

Posted : 10/06/2017 7:40 pm

Guys, what could this proteinuria be?

I'm kind of worried...

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MemberMember
15
(@nemesisbrady)

Posted : 10/06/2017 7:52 pm

11 minutes ago, Colinboko said:

Guys, what could this proteinuria be?

I'm kind of worried...

Told u could mean kidney disease sadly
means ur leaking protein
my dad needs dialysis

his yrine was bubbly and foamy

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MemberMember
1803
(@guitarman01)

Posted : 10/06/2017 7:54 pm

On 10/6/2017 at 1:18 AM, tanedout said:

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!..

[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;

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!

I was looking into this a little bit. Always curious. My conclusion is this guy is absolutely nuts. sorry, just my opinion though.I can see why all of this probably got banned or deleted.
looking at ru486, it blocks progesterone. This goes against that italian PFS study that found low CSF levels of progesterone. They found normal levels in the blood though. I dont really hold that italian study in high regard. How many people did they spinal tap again? close to 40? that would never happen here in the states. Im sure they felt they better find something. The blood hormone results are conflicting post accutane. post fin outside of that study.

Talking about downstream, I think its best to try to stick to the surface to find what might be real.
One thing I also see in common post Accutane, post Fin, and CFS, people are absolutely losing their minds over this shit.
Not that im claiming to be the exception.
Not their fault though. Something is definitely going on thats affecting thought process.
Thats where the compulsiveness kicks in to try to figure it out or try to rationalize or come to terms with.

So whats up with ru486? ive seen it mentioned on rxrisk.
im done looking into anything else for the moment or I should say trialing.
Im going to stick to taking k2 for now, and take the wait and see approach.
If something was to be "it" if thats even a possibility, Then everything else might be wrong. Or has been.

On 10/7/2017 at 8:40 AM, Colinboko said:

Guys, what could this proteinuria be?

I'm kind of worried...

how much protein was in your urine? is your piss dark or light colored?
What did the doc say? whats the follow up?
have you had cholesterol, glucose checked?
high blood pressure? what kind of dosage, how long did you take accutane again?

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MemberMember
75
(@colinboko)

Posted : 10/06/2017 8:17 pm

32 minutes ago, guitarman01 said:
I was looking into this a little bit. Always curious. My conclusion is this guy is absolutely nuts. sorry, just my opinion though.I can see why all of this probably got banned or deleted.
looking at ru486, it blocks progesterone. This goes against that italian PFS study that found low CSF levels of progesterone. They found normal levels in the blood though. I dont really hold that italian study in high regard. How many people did they spinal tap again? close to 40? that would never happen here in the states. Im sure they felt they better find something. The blood hormone results are conflicting post accutane. post fin outside of that study.

Talking about downstream, I think its best to try to stick to the surface to find what might be real.
One thing I also see in common post Accutane, post Fin, and CFS, people are absolutely losing their minds over this shit.
Not that im claiming to be the exception.
Not their fault though. Something is definitely going on thats affecting thought process.
Thats where the compulsiveness kicks in to try to figure it out or try to rationalize or come to terms with.

So whats up with ru486? ive seen it mentioned on rxrisk.
im done looking into anything else for the moment or I should say trialing.
Im going to stick to taking k2 for now, and take the wait and see approach.
If something was to be "it" if thats even a possibility, Then everything else might be wrong. Or has been.

how much protein was in your urine? is your piss dark or light colored?
What did the doc say? whats the follow up?
have you had cholesterol, glucose checked?
high blood pressure? what kind of dosage, how long did you take accutane again?

Wasn't told the exact amount. It's light colored and bubbly/foamy/fizzy and cloudy. The neurologist actually found this out for me through my 24 hr urinalysis. And passed it off to my GP to review and decide what the next steps are that I should take.

She ordered some neo test? (tests for cancer but said she suspects its not cancer, and a CRP and ESR to look for any form of hidden inflammation)

I do tend to have higher blood pressure now. (Not earth shattering high but high) and no word on my cholesterol.

I was on accutane for the first month at 30mg a day and then upped that to 60mg a day for another week or so before all my symptoms hit. Wasn't even on it for 2 months

Also have had VERY viscous semen.... and I drink plenty of water

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MemberMember
75
(@colinboko)

Posted : 10/06/2017 9:06 pm

How many people on this forum have actually had a CRP or ESR test? (besides guitarman... considering that's just one statistic)

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MemberMember
299
(@macleod)

Posted : 10/07/2017 1:34 am

So, got my lab results back from Rheum and everything checks out normal. Sed Rate, HLA-B27 antigen, C-reactive protein, ANCA screen, ANA screen.
This pretty much deflates any auto-immune angle I try to propose to doctors now, and to myself too, really. These results combined with my full CBC panel, hepatic panel, opthamology tests, mri's, ct-scan, endoscopy puts me in really good normal health.

Hate to say it but my primary care doc was right. Aside from finding low T, low FSH, and a pituitary microadenoma (so micro it may not even be there),I've kind of jumped the gun a bit. This leaves me with only pursuing neurologists to address hypermetabolism (tinnitus,night blindness, persistent afterimages, delayed wound healing, sleep disorder) of the brain and psychiatrists to address clinical depression and anxiety...

Sucks. But I tried...all year. I can't think of anything else. Maybe telomeres. Traumatic brain injury. Dunno.

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MemberMember
37
(@mariovitali)

Posted : 10/07/2017 2:31 am

@macleod

Can you try having a Fibroscan please?

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macleod, macleod and macleod reacted
MemberMember
75
(@colinboko)

Posted : 10/07/2017 3:23 am

1 hour ago, macleod said:

So, got my lab results back from Rheum and everything checks out normal. Sed Rate, HLA-B27 antigen, C-reactive protein, ANCA screen, ANA screen.
This pretty much deflates any auto-immune angle I try to propose to doctors now, and to myself too, really. These results combined with my full CBC panel, hepatic panel, opthamology tests, mri's, ct-scan, endoscopy puts me in really good normal health.

Hate to say it but my primary care doc was right. Aside from finding low T, low FSH, and a pituitary microadenoma (so micro it may not even be there),I've kind of jumped the gun a bit. This leaves me with only pursuing neurologists to address hypermetabolism (tinnitus,night blindness, persistent afterimages, delayed wound healing, sleep disorder) of the brain and psychiatrists to address clinical depression and anxiety...

Sucks. But I tried...all year. I can't think of anything else. Maybe telomeres. Traumatic brain injury. Dunno.

Are those all your side effects? No hair loss? Or anything of that nature?

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MemberMember
157
(@tanedout)

Posted : 10/07/2017 3:37 am

7 hours ago, guitarman01 said:
I was looking into this a little bit. Always curious. My conclusion is this guy is absolutely nuts. sorry, just my opinion though.I can see why all of this probably got banned or deleted.
looking at ru486, it blocks progesterone. This goes against that italian PFS study that found low CSF levels of progesterone. They found normal levels in the blood though. I dont really hold that italian study in high regard. How many people did they spinal tap again? close to 40? that would never happen here in the states. Im sure they felt they better find something. The blood hormone results are conflicting post accutane. post fin outside of that study.

Yeah I know what you mean, but I think a lot of things he talks about make a lot of sense. For example, the theory of there being 2 types of PFS/post-accutane (seen people speculate on this before) depending on whether progesterone receptors are left up-regulaed or down-regulated. He states that the profile for down-regulation would be having high DHT and cortisol, low e and potassium. Well my bloods show high DHT, cortisol and low potassium. E hasn't been tested, but I have low e symptoms like stiff joints. He also says people with down-regulated receptors would respond quit well to topical progesterone - well I do, hence why I've been banging on about it recently, so this adds weight to the theories.He also talks about how copper will be made bio-unavailable (and hence high copper levels in theory). Look at all the hair mineral analysis people were getting on this thread, all showing really high copper. RU486 looks like being a theoretical 'quick fix' based on his theory, but some PFS guys are trialling it.

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MemberMember
9
(@indigorushreturns)

Posted : 10/07/2017 7:31 am

Hello.
It's been a while since I posted.
I had to make a new account, as I'm not sure what my email address was for the old account.

I'm in a very dark place as I write this ... and I'm not meaning that I've had a power cut.

Posting here is pointless. But, then, everything is pointless now.

Going on Holiday is pointless.
Being in a relationship is pointless.
Having life goals is pointless.
Because it always comes back to the giant obstacle that is damage from Accutane.
Going abroad doesn't offer any respite. The problems follow me around everywhere.

I guess I was kidding myself, whenever I thought there was a way out of this.
It was fun playing the scientist for a while ... 'One day, we'll pull together and get there', I thought.

Except we're now on page 548 of the investigation, and I'm guessing you guys are no closer to a solution - Am I right?

I think I am very close to the end now.
Things have only become worse with time. How is that even possible?

I don't know how I've managed to pull off the illusion that I can function like a normal human being for so long.
In reality, I've just about made it this far.
I have no idea what I'm doing with my life, and my life already ended in 2005 when I decided to swallow these horrible pills.
People notice there's something off about me, and I am unable to hide the pain in my eyes.

But who would have known what the risk was at the time?
I guess I can say I've learned a lot from this experience.
This drug is just one example of many, of the huge corruption and greed in our World.
Everything Roche claim suicide is linked to acne, they know they are lying.
They don't care that another one of us has died.

Since becoming Vegan, it's only enlightened me further to the fact this isn't a kind planet.
And so I am now completely, utterly hopeless.
Nobody is coming to save us - and I never was a believer in God.

After almost 12 years of looking for a way out, I have to accept the only way out is by ending my experience.

Nobody in my family - and nobody else who knows me - can imagine what has happened.
Doctor's give me pity looks, while offering me anti-depressants.
No-one believes me.

I'm sorry if anyone thought I'd disappeared because things were better for me now.
If I had any hope to offer, I'd be the first to tell.

My hair is going grey more and more with time.
The texture of my hair is wire-like.
My penis is nearly always numb and shriveled.
I am chronically constipated, bloated and gassy no matter what I eat or take.
My eyes are dry and red.
My gums are receded from the dry mouth.
I feel unable to cry, and feel disconnected from everything.
I have severe anxiety and cannot hold a conversation.

I hope one day you can escape this.
I guess I'm just going to be another statistic or photo in the local paper.

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MemberMember
299
(@macleod)

Posted : 10/07/2017 10:41 am

Hmm, can we confirm this is actually Indigo? If so, welcome back man. You are a true pioneer. Please consider that as many look up to you for starting the thread and making those youtube vids.

8 hours ago, mariovitali said:
@macleod

Can you try having a Fibroscan please?

Sure, I don't see why not. Can't hurt to try one more test.

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MemberMember
75
(@colinboko)

Posted : 10/07/2017 11:00 am

3 hours ago, IndigoRushReturns said:

Hello.
It's been a while since I posted.
I had to make a new account, as I'm not sure what my email address was for the old account.

I'm in a very dark place as I write this ... and I'm not meaning that I've had a power cut.

Posting here is pointless. But, then, everything is pointless now.

Going on Holiday is pointless.
Being in a relationship is pointless.
Having life goals is pointless.
Because it always comes back to the giant obstacle that is damage from Accutane.
Going abroad doesn't offer any respite. The problems follow me around everywhere.

I guess I was kidding myself, whenever I thought there was a way out of this.
It was fun playing the scientist for a while ... 'One day, we'll pull together and get there', I thought.

Except we're now on page 548 of the investigation, and I'm guessing you guys are no closer to a solution - Am I right?

I think I am very close to the end now.
Things have only become worse with time. How is that even possible?

I don't know how I've managed to pull off the illusion that I can function like a normal human being for so long.
In reality, I've just about made it this far.
I have no idea what I'm doing with my life, and my life already ended in 2005 when I decided to swallow these horrible pills.
People notice there's something off about me, and I am unable to hide the pain in my eyes.

But who would have known what the risk was at the time?
I guess I can say I've learned a lot from this experience.
This drug is just one example of many, of the huge corruption and greed in our World.
Everything Roche claim suicide is linked to acne, they know they are lying. 
They don't care that another one of us has died.

Since becoming Vegan, it's only enlightened me further to the fact this isn't a kind planet.
And so I am now completely, utterly hopeless.
Nobody is coming to save us - and I never was a believer in God.

After almost 12 years of looking for a way out, I have to accept the only way out is by ending my experience.

Nobody in my family - and nobody else who knows me - can imagine what has happened.
Doctor's give me pity looks, while offering me anti-depressants.
No-one believes me.

I'm sorry if anyone thought I'd disappeared because things were better for me now.
If I had any hope to offer, I'd be the first to tell.

My hair is going grey more and more with time.
The texture of my hair is wire-like.
My penis is nearly always numb and shriveled.
I am chronically constipated, bloated and gassy no matter what I eat or take.
My eyes are dry and red.
My gums are receded from the dry mouth.
I feel unable to cry, and feel disconnected from everything.
I have severe anxiety and cannot hold a conversation.

I hope one day you can escape this.
I guess I'm just going to be another statistic or photo in the local paper.

I agree 100% with @macleod

You have pushed through as long as you have and science and doctors are only bound to get better. While this whole thing seems like an absolute and utter mess, all it could take one day is one doctor to find one thing and that could turn our lives around. 

There are many dark days in this shitty time and I hope you can understand that people have gotten better, my friend. 

I know you've taken several supplements and anti-depressants but how about prednisone or things stronger than vitamins? 

Just know that you're loved man

Found this old post by you 

IMG_3617.PNG

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MemberMember
299
(@macleod)

Posted : 10/07/2017 11:45 am

On 10/7/2017 at 4:23 PM, Colinboko said:

Are those all your side effects? No hair loss? Or anything of that nature?

Lol, those were just my most debilitating. A short list. I probably have like 20 more side effects. Lost about 30% of my hair. Went through shedding periods, first year post tane was the worst. Hundreds of pieces a day. Now there is receding around the crown area. Grey hairs started mid 20's both in my beard and head.

On 10/8/2017 at 12:00 AM, Colinboko said:

I know you've taken several supplements and anti-depressants but how about prednisone or things stronger than vitamins?

I agree.

Indigo, please consider tryingMifepristone. If you've really nothing to lose you can try a bunch of theoretical cures that people are suggesting:

Mifepristone [Edited link out]
Cannabidiol oil

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MemberMember
75
(@colinboko)

Posted : 10/07/2017 12:28 pm

Okay, so with inflammation still brewing in the back of my mind, I'm just exploring other routes

One of those being "high testosterone"

I know that sounds absolutely crazy but why are my arms SO much hairier than before accutane? Like I'm talking A LOT hairier. And it's also weird that I have high blood pressure..?

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MemberMember
9
(@indigorushreturns)

Posted : 10/07/2017 1:45 pm

2 hours ago, Colinboko said:
I agree 100% with @macleod

You have pushed through as long as you have and science and doctors are only bound to get better. While this whole thing seems like an absolute and utter mess, all it could take one day is one doctor to find one thing and that could turn our lives around. 

There are many dark days in this shitty time and I hope you can understand that people have gotten better, my friend. 

I know you've taken several supplements and anti-depressants but how about prednisone or things stronger than vitamins? 

Just know that you're loved man

Found this old post by you 

IMG_3617.PNG

It's weird to read this, because I have no memory of writing it.
Although the reference to Veganism shows my morals have remained consistent.
Despite what I said in that quote, I am still Vegan and cannot make peace with eating animals.
I don't think my health is worse off either way.

My mum came round earlier and talked to me.
I guess it helped a bit, but I still feel as terrified about my future as always.
My post from earlier today was a necessary rant about how I have been feeling for so long.
Living day-to-day is so hard. It's difficult pretending I'm not dead inside.

But I know I don't need to explain myself to you guys.
I'm truly so sorry that this has happened to all of you too.

I feel ready to fight now.
I refuse to stay quiet about this.
And I think we need to step up our game.

This medication is still being prescribed, and that is not okay.

So, where do we go from here?
Is there anybody in the UK who would consider making a documentary with me?
I'm speaking about a YouTube documentary, where our stories are shared.
Pretty bold, I know.

But I feel I have nothing to lose now.
And yes, this is the same Stefan who started this post.

I can't believe how wide spread this has become.
I take no pride in that, but there is power in numbers.

 

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