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Repairing the long-term damage from Accutane

 
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1803
(@guitarman01)

Posted : 08/05/2016 7:52 pm

Isotretinoin use for acne vulgaris is associated with increased serum uric acid levels.

Abstract

A few previous case reports related vitamin A and retinoid use with elevated serum uric acid (SUA) levels. Recently, a population based study showed an independent positive correlation of serum retinol with SUA levels. Despite increasing importance of SUA in a number of disease states, no study has examined the association between retinoids and SUA. We aimed to evaluate the effect of pharmacologic dose isotretinoin on SUA level. This was a cohort study in which 51 consecutive adult patients with severe acne vulgaris who were prescribed oral isotretinoin treatment (0.5mg/kg) were included. Dermatologic examination was performed and SUA levels were measured at study inclusion for each participant, and then repeated at the first and second months of therapy. SUA levels at first month and second month were significantly higher than baseline SUA levels (p: 0.001, 0.007, respectively). SUA levels at second month were higher than SUA levels at first month, but the difference did not reach statistical significance. This study is the first to show that pharmacologic dose oral isotretinoin treatment significantly increased SUA levels. Since hyperuricemia is associated with renal disease, hypertension, atherosclerosis and metabolic syndrome as well as gout, it is important for the dermatologist to be aware of this potential adverse effect of isotretinoin particularly in vulnerable patients.

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Gladiatoro, ACCUiTy_drANE, Gladiatoro and 3 people reacted
MemberMember
1804
(@truejustice)

Posted : 08/05/2016 9:18 pm

1 hour ago, guitarman01 said:

Isotretinoin use for acne vulgaris is associated with increased serum uric acid levels.

Abstract

A few previous case reports related vitamin A and retinoid use with elevated serum uric acid (SUA) levels. Recently, a population based study showed an independent positive correlation of serum retinol with SUA levels. Despite increasing importance of SUA in a number of disease states, no study has examined the association between retinoids and SUA. We aimed to evaluate the effect of pharmacologic dose isotretinoin on SUA level. This was a cohort study in which 51 consecutive adult patients with severe acne vulgaris who were prescribed oral isotretinoin treatment (0.5mg/kg) were included. Dermatologic examination was performed and SUA levels were measured at study inclusion for each participant, and then repeated at the first and second months of therapy. SUA levels at first month and second month were significantly higher than baseline SUA levels (p: 0.001, 0.007, respectively). SUA levels at second month were higher than SUA levels at first month, but the difference did not reach statistical significance. This study is the first to show that pharmacologic dose oral isotretinoin treatment significantly increased SUA levels. Since hyperuricemia is associated with renal disease, hypertension, atherosclerosis and metabolic syndrome as well as gout, it is important for the dermatologist to be aware of this potential adverse effect of isotretinoin particularly in vulnerable patients.

Renal Disease - shortness of breath, confusion, Kidney issues
Hypertension - high blood pressure, phychological stress
Gout - painful joints
Metabolic Syndrome - Fatty liver, cholesterol issues, Erectile dysfunction

Any of these ring a bell????? They do with me

Thx for posting!!!

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MemberMember
1803
(@guitarman01)

Posted : 08/05/2016 10:07 pm

50 minutes ago, TrueJustice said:
Renal Disease - shortness of breath, confusion, Kidney issues
Hypertension - high blood pressure, phychological stress
Gout - painful joints
Metabolic Syndrome - Fatty liver, cholesterol issues, Erectile dysfunction

Any of these ring a bell????? They do with me

Thx for posting!!!

there is a simple blood test for this. uric acid serum. not sure if anyone has gotten this or not. Btw that study is from 2016 . The gift that keeps on giving lol. im going to get this blood test just to be sure.

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264
(@snarkygirl)

Posted : 08/06/2016 8:55 am

On 8/3/2016 at 5:26 PM, cnb30 said:
On 8/2/2016 at 4:24 PM, snarkygirl said:
wow someone needs to stfu. If you had a good experience with accutane, grey. Now leave us alone, were here because we didn't. I still think you can get better but it may take a while. I think the right med would work wonders for you. Or something like st johns wort. If ypu are mistrustful of doctors maybe see a naturopath.

BTW I just wanna add, I really like everyone's sardonic usernames on here. You guys are a twisted bunch. I like that.

im pretty sure you're correct. Thats like saying, hey static electricity is the same as the atom bomb.

I also want to add that I was already incredibly (suicidally) depressed for a while before beginning accutane treatment.

your Dr shouldn't have even recommended it to you

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45
(@cnb30)

Posted : 08/06/2016 12:57 pm

Yeah she dismissed that I was depressed. Also, does anyone here still experience this headaches in the orbitofrontal cortexthat are probably responsible for 90% of our problems. You know, the ones that felt like your entire brain was being attacked by pins and needles? The ones that killed me as a person? Do I ever get back what I lost?

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MemberMember
264
(@snarkygirl)

Posted : 08/06/2016 3:09 pm

2 hours ago, cnb30 said:

Yeah she dismissed that I was depressed. Also, does anyone here still experience this headaches in the orbitofrontal cortexthat are probably responsible for 90% of our problems. You know, the ones that felt like your entire brain was being attacked by pins and needles? The ones that killed me as a person? Do I ever get back what I lost?

I never had migraines until age 30 don't know if its from that or coincidental.

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MemberMember
45
(@cnb30)

Posted : 08/06/2016 3:19 pm

8 minutes ago, snarkygirl said:
2 hours ago, cnb30 said:

Yeah she dismissed that I was depressed. Also, does anyone here still experience this headaches in the orbitofrontal cortexthat are probably responsible for 90% of our problems. You know, the ones that felt like your entire brain was being attacked by pins and needles? The ones that killed me as a person? Do I ever get back what I lost?

I never had migraines until age 30 don't know if its from that or coincidental.

Did your migraines feel like what I described? I know I've had other types of headaches too. Like the kind where your head is just sore, this was different though, like it felt as if my head was attacked by pins and needles

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MemberMember
76
(@yetanotheraccutanevictim)

Posted : 08/06/2016 8:28 pm

7 hours ago, cnb30 said:

Yeah she dismissed that I was depressed. Also, does anyone here still experience this headaches in the orbitofrontal cortexthat are probably responsible for 90% of our problems. You know, the ones that felt like your entire brain was being attacked by pins and needles? The ones that killed me as a person? Do I ever get back what I lost?

I have intense migraines in that exact region. Right on the front of my brain. I noticed it's when I eat a meal high in sulfur (like boiled eggs, Brussels sprouts, broccoli, etc..). I wouldn't describe it as being attacked by pins and needles. I would say it's more of an intense burning sensation that prevents me from staring at any screens (phone, computer, etc).

Attention
https://thequantifiedbody.net/fat-soluble-micronutrients-chris-masterjohn/

Chris Masterjohn, Ph.D. from the interview linked above(The show notes provide more information).
To determine Vitamin A sufficiency/deficiency:
To determine a retinol deficiency (the physiologically active form of Vitamin A), serum retinol is surprisingly pretty accurate.
If you are below the normal range, you are most likely deficient in true vitamin A (retinol).
Night blindness is the first symptom to show up.
Also, Chris Masterjohn said he was at the lower end of the normal range and still night blindness.
He recommends at least getting it up to the middle of the normal range.

---

Even more importantly: (at around 1:10:20 - 1:11:30 in the interview)
*To determine vitamin A overload in the liver:
If you're concerned about having too much Vitamin A stored in the body, there's a good formula to use:
I. Get these 2 values tested:
1) Your fasting serum retinol
2) Your fasting serum retinyl esters
II. Add the 2 values together and calculate if serum retinyl esters are greater than 10% of the sum total:
If the serum retinyl esters are greater than 10% of the sum of the 2 values, this indicates your liver is overloaded with vitamin A.
Quest Diagnostics provides these tests under the names of:
1) Serum Vitamin A(which is serum retinol)
2) Serum Vitamin A Palmitate (which is retinol palmitate: the predominant retinyl ester)
*You must be in a fasted state or this is not accurate.
If you do the calculations and determine that your liver is overloaded, you either need to cut back on vitamin A or correct some backup in your metabolism.
For example, having a fatty liver can compromise the vitamin A storage capabilities.
However, if you are lean and healthy with good body composition, the most reasonable interpretation of those results would be that you're overloading your liver with vitamin A and you just need to stop ingesting so much vitamin A.

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18
(@humanecyclone)

Posted : 08/06/2016 10:15 pm

9 hours ago, cnb30 said:

 

Yeah she dismissed that I was depressed. Also, does anyone here still experience this headaches in the orbitofrontal cortexthat are probably responsible for 90% of our problems. You know, the ones that felt like your entire brain was being attacked by pins and needles? The ones that killed me as a person? Do I ever get back what I lost

 

I had these for a few months after stopping; however, i only felt that sensation in a small area right above the top of the bridge of my nose (like right in between my eyebrows). Now they're completely gone though.

I never thought that anyone else experienced that feeling, and i honestly thought it was just me. It honestly kills me thinking about it now because my dermatologist assured me Accutane didn't affect your brain at all...

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223
(@gladiatoro)

Posted : 08/06/2016 11:20 pm

1 hour ago, HumaneCyclone said:
I had these for a few months after stopping; however, i only felt that sensation in a small area right above the top of the bridge of my nose (like right in between my eyebrows). Now they're completely gone though.

I never thought that anyone else experienced that feeling, and i honestly thought it was just me. It honestly kills me thinking about it now because my dermatologist assured me Accutane didn't affect your brain at all...

B.S mri's don't lie . Before and after treatment brain scans show changes .

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MemberMember
1804
(@truejustice)

Posted : 08/07/2016 2:42 am

https://metabolichealing.com/uric-acid-clearing-confusion-gout-important-antioxidant/

Intersting info here, especially how uric acid ties in with molybdenum and inflammation, particularly within the stomach.

Definitely worth some further investigation I reckon.

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MemberMember
76
(@yetanotheraccutanevictim)

Posted : 08/07/2016 2:22 pm

11 hours ago, TrueJustice said:
https://metabolichealing.com/uric-acid-clearing-confusion-gout-important-antioxidant/

Intersting info here, especially how uric acid ties in with molybdenum and inflammation, particularly within the stomach.

Definitely worth some further investigation I reckon.

reference range of my lab: 3.5-7.2 mg/dL
optimal range:3.0 - 4.0 mg/dL

My uric acid result: 5.8 mg/dL (from May 2015) (I took accutane in 2012).

That link you posted says
Elevations in uric acid, >5.0 mg/dl are reflective of rising levels of inflammatory activity and have little if anything to do with dietary purines. Uric acid can also rise in response to mycotoxicosis, and may also be elevated with GI inflammation.
Additionally, if there are aberrations or expressive genetic mutations in the body's methylation cycles (such as MTHFR, MTRR, SUOX, CBS), this can alter the rate of purine and uric acid biosynthesis. The pathway to purine biosynthesis is induced from 5, 10 methylene tetrahydrofolate. This folate metabolite is directly affected by multiple methylation reactions, involving many enzymes. Considering the high prevalence of methylation cycle dysfunction, one should always give attention to this factor when uric acid is elevated. Methylation dysfunction may be a core component ofcardiovascular diseasebecause of methylation's role in homocysteine metabolism, glutathione formation and nitric oxide synthesis.

Low Uric Acid

A common feature is a decrease in uric acid. This is often caused by a deficiency of an important mineral known as molybdenum. Molybdenum has 3 important roles:

  1. Conversion of sulfites into sulfates
  2. Synthesis of uric acid
  3. Aldehyde oxidase - removal of acetaldehyde

I have low molybdenum levels which is interesting as my uric acid levels are moderately high.

And everyone check out my previous post on vitamin A testing in the liver. We should all get this done.

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(@feastofvermin)

Posted : 08/07/2016 8:56 pm

On 7/21/2016 at 3:38 AM, tryingtohelp2014 said:

Square 1 stuff.....

Finasteride and Accutane both bind to NADPH.

NADPH is used to turn testosterone into DHT

NADPH is used to detoxify retinoids via the CYP26A1.   CYP26A doesnt work without NADPH 

2016-07-20_0039.png

2016-07-20_1435.png

a low ceruloplasmin connection?

Thiamine and zinc are needed to produce gastric acid HCL.   this could tie into the Candida and SIBO problem.   without enough stomach acid to digest... you run into all of those problems.

The majority of our bodies NADPH is produced on the Pentose Phosphate pathway.  Thiamine (B1) is the cofactor for this.   Thiamine deficiency is also seen in low ceruloplasmin.  Thiamine is used to treat peripheral neuropathy 

Our bodies synthesize retinoic acid from retinol using ALDH1 .  ALDH1 is inhibited by NADPH and NAD+  stopping the conversion of excess  retinoic acid.  http://onlinelibrary.wiley.com/doi/10.1046/j.1432-1033.2002.02891.x/pdf

[Edited link out]

Ways to increase NADPH:

so Benfotiamine is a fast way to get thiamine into your system increasing NADPH

Megadosing Thiamine itself.  1500mg is the saturation point.  

NAD+  can be bought on Amazon.   

Hi tryingtohelp2014,

Thanks to you, Modeaa, Relentless and some of the others for digging up all this information. I found this thread years ago and it's still going.

I saw in that study pdf you posted, that T3 inhibits ALDH (retinal -> RA conversion).

That seems significant to me. I've seen other resources suggest that nobody should take large dose of A without good thyroid. T3 also helps offset GNMT upregulation caused by retinoic acid (search for "Triiodothyronine Treatment Attenuates the Induction of Hepatic Glycine N-Methyltransferase by Retinoic Acid and Elevates Plasma Homocysteine Concentrations in Rats").

Has anyone tried focusing on thyroid?

All I have tried is NDT (despite not terrible TSH/T4/T3 on paper) and it does pick me up a bit on rough days. But the product quality is doubtful. I can't source a reliable pure T3-only product.

Then I wonder about thyroid hormone resistance.

Also, do you have a list of Retinal(dehyde) Dehydrogenase inhibitors? (specifically retinal, not retinol)

 

 

Also, it's worth posting, one of the major benefits of TUDCA is increased T4->T3 conversion through deodinase enzymes.

(As for myself, I had a long course of accutane in my late teens (decade ago). My body was later destroyed by fluoroquinole antibiotics (which was much more violent than accutane but it's not my focus presently). Currently I focus on dryness and intractable frontal lobe disturbance.)

 

 

 

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299
(@macleod)

Posted : 08/07/2016 10:08 pm

1 hour ago, feastofvermin said:

(As for myself, I had a long course of accutane in my late teens (decade ago). My body was later destroyed by fluoroquinole antibiotics (which was much more violent than accutane but it's not my focus presently). Currently I focus on dryness and intractable frontal lobe disturbance.)

That's quite interesting. I have a buddy who was accutaned like all of us, similar general sides, you know the list, but his main ones that I didn't have were extreme bloodshot dry eyes, blepharitis even. He'd seen countless docs. Couple years later a young intern doctor decided to drop a couple of those fluoroquinole drops in and shit just hit the fan for him. He was saying his breathing had been affected, heart beat, just crazy excruciating stuff. Was admitted to the ER several times. He just messaged me recently said he's still fucked up, but managing. Any correlation between these drugs? Any correlation between us genetic wise? Just seems too coincidental.

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MemberMember
1803
(@guitarman01)

Posted : 08/07/2016 10:27 pm

Recent studies have shown that changes in the composition of gut microbiota composition participate in systemic inflammation

Fermentation /Small BowelBacterial Overgrowth (SBBO).This is a condition ofcarbohydrateintolerance induced by overgrowth of bacteria in the stomach,small intestineand beginning of the large intestine. Bacterial overgrowth here is promoted byhypochlorhydria, by stasis due to abnormal bowelmotility, physical/surgical abnormalities, by immune deficiency or by malnutrition. Gastric bacterial overgrowth increases the risk of systemic infection and the sufferer develops an intolerance tocarbohydrate. Any carbohydrate ingested is fermented by thebacteriaand results in production of toxic waste products.

Carbohydrate intolerance may be the only symptom of bacterial overgrowth, making it indistinguishable from intestinalcandidiasis; in either case dietary sugars can be fermented to produce endogenous ethanol. Chronic exposure of thesmall bowelto ethanol may itself impair intestinal permeability. British physicians working with the gut-fermentation syndrome have tentatively concluded, based on treatment results, that the majority of cases are due toyeastovergrowth and about 20% arebacterialin origin. The symptoms includeabdominaldistension,carbohydrateintolerance,fatigueand impaired mental function.

The risk factors for SBBO include those for yeast overgrowth and also: Insufficient stomach acid; Abnormal stoolmotility; Strictures; Surgery; Immune deficiency; Malnutrition. SBBO has been implicated in gastric cancer and can causeacidosis(where the body becomes too acidic) due to increased production of lactic acid

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299
(@macleod)

Posted : 08/08/2016 12:14 am

Why do you keep posting the same gut stuff constantly? We've all changed our diets accordingly and some have gone as far as doing flushes. Still not the basis of the problem. Isotretinoin affects several glands and organs in different places. Naturally, if all that is affected is your gut from accutane, then by all means treat it, but for me personally, it's not going to balance my intracranial pressure, change my vision back to normal, get rid of my tinnitus, and lift my depression. I have hippocampal areas in the brain and inner rods within the eyes to work on.

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1804
(@truejustice)

Posted : 08/08/2016 12:40 am

16 minutes ago, macleod said:

Why do you keep posting the same gut stuff constantly? We've all changed our diets accordingly and some have gone as far as doing flushes. Still not the basis of the problem. Isotretinoin affects several glands and organs in different places. Naturally, if all that is affected is your gut from accutane, then by all means treat it, but for me personally, it's not going to balance my intracranial pressure, change my vision back to normal, get rid of my tinnitus, and lift my depression. I have hippocampal areas in the brain and inner rods within the eyes to work on.

I have similar issues to you - the intracranial pressure sucks and having had it for 18 years also sucks. I do wonder though that restoring gut health might alleviate some of my problems including depression. Doesn't serotonin start in the gut??

A very common link that I'm starting to see among all of us regardless of of any particular issue is that of "Systemic Inflammation" of the body.

This is the area I'm starting to focus on more.

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46
(@vanceastro)

Posted : 08/08/2016 5:34 am

Did anyone managed to cure post Accutane fat malabsorption(orat least got a proper diagnosis)?

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MemberMember
299
(@macleod)

Posted : 08/08/2016 1:19 pm

12 hours ago, TrueJustice said:
A very common link that I'm starting to see among all of us regardless of of any particular issue is that of "Systemic Inflammation" of the body.

This is the area I'm starting to focus on more.

oh for sure. One thing i noticed early on was that about 6 or 7 of my symptoms ended with the suffix 'itis' which i thought was an interesting pattern. immediately post accutane i started suffering from gigivitis of the gums. to tendonitis of the tendons, mild arthritis of the joints, tinnitis in my hearing (obviously from the intracranial pressure), and now dealing with pancreatitis. It's clearly a systemic thing throughout. Now, from what I have gathered over the years is that we are still unable to cure 'itis' diseases because its a systemic functional body response thing, but rather manage them, which is obv what were trying to do with diet and exercise. i just dont want people thinking that the problem originates in the gut, or some bacteria is causing all this systemic inflammation response. It could very well be...I just don't think so. And that is what I'm looking for. What isotretinoin impacted directly within the cells.

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45
(@cnb30)

Posted : 08/08/2016 8:19 pm

I'm at that point where death is tempting again. I've honestly given up hope at this point and considering I am permanently physically depressed, I am unwilling to live a life like this. I am having so many flashbacks to being depressed as a kid (and feeling that emptiness again) and am watching my passion life stories, intense feelings, strong ideals and goals in life slowly turn to dust. Furthermore I will not let my murderers get away Scott free either.

PS. I'm glad that you guys exist as a group of sentient beings who realize what is goingon here, but from what I've heard, I've entered the void of no return. I hope nobody takes this personally, but the depression and hopelessness without end I have seen on here from everyonemakes me realize I have no choice but to take action of some kind.

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359
(@dubya_b)

Posted : 08/08/2016 11:43 pm

Many of us in your position have come and gone, some have committed suicide, and no one has uncovered any solid answers after many years of deliberation and self-treatment .

Let's make one last push to find out through scientific discovery, rather than individual speculation, what has really happened to us and if there is some way to possibly reverse it. We can't fix what we don't understand, but if there is any chance to experience life the way it was before Accutane, it will be well worth any effort put into unveiling the adverse effects it created. There are more people who have come to the same conclusion than there are actively posting in this thread at the moment. They have nothing left to say, see no other way out of this hell, but haven't had the opportunity to take action.

For this reason, a new website and multiple forums have been created for the purpose of fostering media attention, patient advocation toward the medical community, and scientific research into several drug classes that share an overlapping set of persistent side effects with Accutane:

[Edited link out]

We also have our own Accutane Forum after much talk and too much time spent waiting.

The site will grow and evolve over time and there are more things planned than what you will see on the site from the launch date. We have had good people from the PFS, PSSD, and post-Lupron communities provide input, content, and help over the past couple years.

You don't have to take part in discussion among the other groups if you do not wish to, but after speaking with so many people who have been left with long-term side effects from these other drugs, the similarities we share are astounding.

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MemberMember
45
(@cnb30)

Posted : 08/09/2016 8:24 am

Someone needs to make the drug companies pay in a way other than money at this rate. That's the only way anything will get done. They must face the consequences of whatthey have committed.

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MemberMember
47
(@walden-rev)

Posted : 08/09/2016 12:14 pm

Piracetam,

Anyone here tried piracetam? It give me chapped lips again and intense muscle pain.
They use it to correct brain damage

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37
(@umas)

Posted : 08/09/2016 12:20 pm

15 hours ago, cnb30 said:

I'm at that point where death is tempting again. I've honestly given up hope at this point and considering I am permanently physically depressed, I am unwilling to live a life like this. I am having so many flashbacks to being depressed as a kid (and feeling that emptiness again) and am watching my passion life stories, intense feelings, strong ideals and goals in life slowly turn to dust. Furthermore I will not let my murderers get away Scott free either.

PS. I'm glad that you guys exist as a group of sentient beings who realize what is goingon here, but from what I've heard, I've entered the void of no return. I hope nobody takes this personally, but the depression and hopelessness without end I have seen on here from everyonemakes me realize I have no choice but to take action of some kind.

Yea, I feel like this often too. Just try to repeat to yourself that's it's depression talking, not you. I thought about ending it all at some point, but I hope to warn as many people as I can about big pharma, especially about antiiotics and accutane in acne "treatment".

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MemberMember
45
(@cnb30)

Posted : 08/09/2016 12:28 pm

10 minutes ago, Umas said:
Yea, I feel like this often too. Just try to repeat to yourself that's it's depression talking, not you. I thought about ending it all at some point, but I hope to warn as many people as I can about big pharma, especially about antiiotics and accutane in acne "treatment".

So you're simply saying "Live with this"? I'm not gonna do that. This isn't "depression talking" either. This is a very upset 19 year old who needs justice to be served.

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