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Repairing the long-term damage from Accutane

 
MemberMember
960
(@tryingtohelp2014)

Posted : 09/13/2015 5:32 pm

 

Yeah amino acids are actually the building blocks of proteins. As I understand it the theory goes that seeing as Accutane lowers HSP-70 (confirmed by the study below), this results in Endoplasmic Reticulum stress (the ER deals with unfolded proteins [but not as effectively when stressed]) and as a result you get an Unfolded Protein Response, so unfolded proteins which shouldn't be there, and are there in place of folded proteins that are required by the body for numerous processes. I'm not a biochemist, but it looks like a feasible theory, and seems to be backed up by a number of studies which appear to go some way to backing up the theory.

 

Reduction of heat-shock protein-70 after prolonged treatment with retinoids: biological and clinical implications

 

Regards glycine, I guess this could be a factor as its an amino acid which used to build the proteins, so if it's deficient as a result of raised GNMT enzyme activity in the liver using it up then maybe that further exacerbates the folding issue, or results in less proteins being produced? Either way it can't be good!

 

Also potentially of interest is the fact that tane suffers who've had 23andme DNA tests done have seemed to have the marker for cystic fibrosis, and that condition is partially the response of unfolded proteins, so it may be just confirming the presence of excessive unfolded proteins (again just speculating).

 

I can't put my finger on what role the CFTR gene or protein would play in any typical post-Accutane side effects either. DO remember reading something about trans-membrane trafficking of vitamin A or other retinoids being affected to some degree when certain CFTR mutations are present, but I think that actually caused REDUCED absorbance of retinoids into the cell.

 

Just FYI:

 

The CFTR protein produced by the delta-F508 mutation would be misfolded regardless of chaperone proteins or conditions in the ER because an amino acid codon is missing in the underlying genetic code. This misfolded protein would also be produced regardless of availability of the missing amino acid (phenylalanine).

 

The G551D mutation that YetAnotherAccutaneVicitm has doesn't produce a misfolded protein, but one which embeds into cell membrane as normal, but has a malfunctioning gating function.

What we do know for a fact is:

 

accutane upregulates the GNMT enzyme sometimes over 200% --->

 

this enzyme stays upregulated well after discontinuing accutane. --->

 

GNMT afftects the SAM/SAH ratio by methyl perturbation --->

 

poor SAM/SAH ratio signals ER stress.--->

 

ER stress triggers the unfolded protein response (UPR)

 

this is essentially the same reason for the elevated triglycerides during accutane treatment

 

 

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082587/

 

Recent evidence suggests that homocysteine induced ER stress may be related to an epigenetic effect on ER stress response genes mediated by decreased SAM/SAH due to the rapid conversion of homocysteine to SAH in the liver

 

The unfolded protein response (UPR) is an evolutionarily conserved cell signaling pathway which is activated to regulate protein synthesis and restore homeostatic equilibrium when the cell is stressed from increased client protein load or the accumulation of unfolded or malfolded proteins. Once activated, this signaling pathway can either result in the recovery of homeostasis, , or can activate a cascade of events which ultimately result in cell death.

 

I think we all fall into the latter category... we never achieve the SAM/SAH homeostasis because there is a stored metabolite still disturbing this process that our body is constantly trying to fight. i think this is the reason for the elevated GNMT enzyme.... but maybe our body runs out of the fuel it needs to shut this enzyme off.... mainly Glycine?! methylfolate should theoretically cancel this out, but nobody taking this supplement feels any relief.

 

 

very good diagram on this:

 

http://www.sciencedirect.com/science/article/pii/S0168827814007144

 

 

retinoids and ER stress

 

http://onlinelibrary.wiley.com/doi/10.1002/jcb.22423/abstract?userIsAuthenticated=false&deniedAccessCustomisedMessage=

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MemberMember
960
(@tryingtohelp2014)

Posted : 09/14/2015 9:29 am

tryingtohelp

-i read that er stress increase foxo.

 

- so betaine can help/nedded for scd1 action? sounds good. it said that betain alleviated

jnk- jnk can activate foxo, so betaine migh reduce foxo if it decrease jnk. and togehter with that it mention it decrease er stress it make sense.

 

- http://www.ncbi.nlm.nih.gov/pubmed/24814977 ''Fatty acid elongase-5 (Elovl5) regulates hepatic triglyceride catabolism in obese C57BL/6J mice.'' ''Increasing hepatic Elovl5 activity in obese mice lowered hepatic TGs and endoplasmic reticulum stress markers (X-box binding protein 1 and cAMP-dependent transcription factor 6) and increased TG catabolism and fatty acyl carnitines.''

 

also the way till you get a scd1 and elovl5 activity i think needs earlier activity of things like Acetyl-CoA carboxylase(which needs biotin) and maybe some FAS enzymes and more things . but like i thoght and wrote befor, maybe they can act again once foxo action is releaved(by taking the patway end product/s).

-i also read that:

''In the control series, plasma cis-vaccenic acid was positively correlated with DHA, DPA, adiponectin, palmitoleic acid, and inversely related to body mass index, 18:0, and C-reactive protein (Table 3).''

http://diabetes.diabetesjournals.org/content/57/4/846.full

''Inhibition of Foxo1 Protects Pancreatic Islet -Cells Against Fatty Acid and Endoplasmic Reticulum StressInduced Apoptosis''

 

In the liver, high fatty acids promote an ER stress response associated with JNK activation (10). In adipocytes, fatty acid reduction of insulin signaling is associated with JNK activation and is reversed by JNK inhibition (11). JNK phosphorylates an inhibitory serine residue (serine 307) on the insulin receptor substrate-1 protein, which results in downregulation of insulin signaling (12). JNK also activates Foxo1 by phosphorylation at sites independent of thosephosphorylated by Akt (threonine 447 and threonine 451) (13,14). Deletion of JNK in mice reduces obesity-associated insulin resistance (15).In summary, fatty acid administration of -cells has been shown in separate studies to activate JNK, promote ER stress, and decrease insulin signaling.

 

- i cahnged my source for cis-vaccenic and palmitoleic acids to purple grapes(red globe) instead of the sea buckthorn(i have many food sensetivitis, the sea buckthorm oil contain also seed oil and some added starch crap which to both my skin react in other foods so i only took it twice so far). both help me heal skin cuts/wounds which scince accutane would sitt on my skin for weeks and end up as scars(from just tiny tiny cuts). i eat the grapes without the peel and the seeds(because of my personal food sensetivites) and adding some fat on it for the fatty acids absorption, it work best on empty stomach in the morning(and somethimes not at all if not taken on empty stomach) , it is weird cuase grapes also contain reservetrol which said to activate foxo. foxo can help stop it's own activity but i can't know if this is what's reservetrol would do, also the resevertrol been said to be mainly on the grapes skin which i don't eat, it also depend on the grape kind,

 

 

This is from a very smart guy on the propecia forum i think its relevant in that his theory is to "overcompensate" the substance the GPT gene needs in order to reduce the ER stress and stop the loop. his substance is dolichol. maybe our substance is glycine or betaine for GNMT?! maybe we have to overcompensate what is uses up to shut it off?

 

http://www.hairlosstalk.com/interact/archive/index.php/t-53968.html

 

The Spinach Diet

 

This is the first treatment based off of the dolichol deprivation theory. If the inhibition of SRD5A3 (and subsequent dolichol deprivation) was indeed what caused our syndrome, then by increasing our dolichol levels the point of overcompensating, we could theoretically lessen the stress on the ER. If the stress on the ER caused a UPR to induce a persistent overexpression of the GPT gene, then by lessening the stress on the ER, it could potentially convince the ER to cause a persistent normal expression of the GPT gene, which could potentially lead to the resolution of our syndrome. Unfortunately the only dolichol supplement currently available "Ropren" is extremely expensive and not readily available, so we would have to seek an alternative source. Spinach is one of the few natural sources of dolichol, so the spinach diet treatment was formed.

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MemberMember
960
(@tryingtohelp2014)

Posted : 09/14/2015 11:14 am

tyingtohelp:

 

http://forums.phoenixrising.me/index.php?threads/unfolded-protein-response-and-a-possible-treatment-for-cfs.37244/page-36

''ppodhajski,

SHMT is the enzyme that intraconverts serine and glycine and uses P5P as a cofactor. I think if you have enough B6 your body will make what it needs.

http://www.uniprot.org/uniprot/P34896

 

No SHMT genes in 23andme. clear.png

 

12455-676dd77e6f2b95d83e85bdd59fdafea0.j

 

However that is just one pathway. Here are more.

 

12456-62f80bcc99c4c75b79d5bea52fc77e20.j

''

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4498306/

 

 

A significant suppression of SCD-1 has been observed in several animal models with disrupted sulfur amino acid metabolism, and the activity of SCD-1 is also associated with the levels of these amino acids in humans.

 

 

 

Alcohol consumption and smoking appear to upregulate SCD1 activity, whereas physical activity has the opposite effect [28,34,35,36,37].

The effects of SCD-1 deficiency have been reported in animal models. SCD-1 global knockout mice (SCD-1 ˆ’/ˆ’) exhibit reduced levels of cholesterol esters and triglycerides, and dietary supplementation with monounsaturated fatty acids is not capable of normalizing the production of these compounds [30].

 

maybe this is why some people feel better after drinking the night before? (i still think its because alcohol depletes vitamin A) also it shows here that supplementing with mufas dont help?

 

 

from that link you provided i read over and over about their symptoms... and tinnitus keeps coming up... and they keep going back and forth on using biotin and choline. i think they could be missing manganese as this is the cofactor needed for those two. TUDCA is also the main supplement on their list. bile and bile salts are very important in all of this.... but TUDCA only supplies half of the amino acids that are needed to make bile salts (taurine) ... Glycine is the other!

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MemberMember
960
(@tryingtohelp2014)

Posted : 09/14/2015 2:56 pm

"Furthermore, betaine supplementation dramatically increased SCD1 mRNA levels, suggesting that increased accumulation of monounsaturated fatty acids may responsible for alleviation of insulin resistance in db/db mice fed a betaine-supplemented diet."

 

 

Upregulate SCD1 and fix the sebaceous glands

 

 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0019734 (read the whole thing, this paper is the holy grail imo)

 

 

We previously reported that mice with skin-specific deletion of stearoyl-CoA desaturase-1 (Scd1) recapitulated the skin phenotype and hypermetabolism observed in mice with a whole-body deletion of Scd1. In this study, we first performed a diet-induced obesity experiment at thermoneutral temperature (33C) and found that skin-specific Scd1 knockout (SKO) mice still remain resistant to obesity. To elucidate the metabolic changes in the skin that contribute to the obesity resistance and skin phenotype, we performed microarray analysis of skin gene expression in male SKO and control mice fed a standard rodent diet. We identified an extraordinary number of differentially expressed genes that support the previously documented histological observations of sebaceous gland hypoplasia, inflammation and epidermal hyperplasia in SKO mice. Additionally, transcript levels were reduced in skin of SKO mice for genes involved in fatty acid synthesis, elongation and desaturation, which may be attributed to decreased abundance of key transcription factors including SREBP1c, ChREBP and LXR. Conversely, genes involved in cholesterol synthesis were increased, suggesting an imbalance between skin fatty acid and cholesterol synthesis. Unexpectedly, we observed a robust elevation in skin retinol, retinoic acid and retinoic acid-induced genes in SKO mice. Furthermore, SEB-1 sebocytes treated with retinol and SCD inhibitor also display an elevation in retinoic acid-induced genes. These results highlight the importance of monounsaturated fatty acid synthesis for maintaining retinol homeostasis and point to disturbed retinol metabolism as a novel contributor to the Scd1 deficiency-induced skin phenotype.

 

 

To help determine whether the disturbed retinol metabolism is responsible for the skin phenotypes in Scd1 SKO mice, we subjected Lox and SKO mice to a retinoid-deficient (RD) diet intervention. In both Lox and SKO mice, this RD diet intervention dramatically reduced hepatic retinol and retinyl ester stores to less than 0.25% of the hepatic stores observed in mice fed the standard diet (Figure 2D), but in comparison only modestly reduced plasma retinol levels in both Lox and SKO mice (Figure 2C). However, skin all-trans retinoic acid levels remained 1.5-fold elevated in SKO mice compared to Lox mice (p<0.05; data not shown). Gross and histological examination of skin indicated that the RD diet elicited no remarkable improvement in the phenotype observed in standard diet-fed SKO mice (data not shown). This highlights that SCD1 is critical for skin retinoid homeostasis even under conditions of reduced retinol availability.

 

 

Despite reducing liver retinol stores by more than 400-fold with a RD diet intervention in both Lox and SKO mice, we were unable to normalize skin retinoic acid levels and normal hair growth in SKO mice. In contrast, studies by Shih et al. in Dgat1-deficient mice were able to normalize skin retinoic acid levels and hair growth with a similar intervention [48]. This may indicate that lack of Scd1 causes a more pronounced alteration in retinoic acid metabolism. Consistent with this notion, the skin phenotype elicited by Scd1 deficiency is more severe than that observed due to Dgat1 deficiency [48]. Alternatively, non-retinoid pathways may also be contributing to the skin phenotype. MUFAs are also important for cellular cholesterol ester synthesis [11] and SKO mice have elevated levels of skin free cholesterol [18]. Thus, a decrease in MUFA availability may affect both cholesterol and retinol homeostasis, in addition to triglyceride synthesis.

 

.......

 

So ... even with a Vitamin A restricted diet, our skin retinoic acid levels would still be elevated, even though it would show up as low vitamin A in the liver/blood !?! This solves the paradox of," how can my vitamin A levels be low and i still have these vitamin A toxicity symptoms?!" Or of avoiding/consuming Vitamin A rich foods. It doesnt matter!

 

we MUST fix the SCD1 problem. now the million dollar question is.... what is causing the SCD1 problem years after discontinuing accutane? Is it a stored metabolite either in the liver, or in the skin itself where it cant be accessed? (thats my guess) are we caught in an epigenetic loop? have we become deficient in the things we need to stop the loop? (my hope) do we have to prime the SCD1 pump with high amounts of betaine?

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MemberMember
44
(@nick-ryan)

Posted : 09/15/2015 8:09 pm

Hi all.

 

I'm glad to see everyone is still persevering and fighting the good fight/doing research like mad scientists.

 

I'm not so glad to see it doesn't appear that with all of these studies, we're any closer to an actual, available cure.

 

I've been gone from the forum for a while because once you realize you can essentially cure yourself by eating a clean diet/using portion control, the elusive why and complex studies stop mattering and you're simply well. The most important thing I can say to all of you is to change your diet, eat better, and eat less if you want immediate results. I personally believe it's a leaky gut type issue, caused by an unknown underlying condition/damage, and the best thing you can do for yourself, today, right now, for immediate results, is not eat more than your stomach can hold, and try to eat a diet like the Specific Carbohydrate Diet or something similar that was developed for conditions like this. Once you establish that, you can play around with it and see how much you can get away with. Almost all symptoms can be relieved this way. We'll still have the underlying problem, but this controls it almost completely.

 

That's all.

 

Be well everyone; cheers.

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MemberMember
960
(@tryingtohelp2014)

Posted : 09/15/2015 9:24 pm

Hi all.

 

I'm glad to see everyone is still persevering and fighting the good fight/doing research like mad scientists.

 

I'm not so glad to see it doesn't appear that with all of these studies, we're any closer to an actual, available cure.

 

I've been gone from the forum for a while because once you realize you can essentially cure yourself by eating a clean diet/using portion control, the elusive why and complex studies stop mattering and you're simply well. The most important thing I can say to all of you is to change your diet, eat better, and eat less if you want immediate results. I personally believe it's a leaky gut type issue, caused by an unknown underlying condition/damage, and the best thing you can do for yourself, today, right now, for immediate results, is not eat more than your stomach can hold, and try to eat a diet like the Specific Carbohydrate Diet or something similar that was developed for conditions like this. Once you establish that, you can play around with it and see how much you can get away with. Almost all symptoms can be relieved this way. We'll still have the underlying problem, but this controls it almost completely.

 

That's all.

 

Be well everyone; cheers.

cmon dude... thats a cop out. of course eating "healthy" will help ... but not this.... we need more. something is REALLY messed up. all the information we need is out there....we just need to put it together,

 

leaky gut?

 

http://njshorefit.com/beachbodybootcamp/2013/02/03/gelatin-and-leaky-gut/ :))

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MemberMember
13
(@alantookaccutanewow)

Posted : 09/16/2015 6:59 am

EDIT: *editing this post due to me being a general asshole*

 

Moderators, feel free to remove this post.

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MemberMember
5
(@maddy1234)

Posted : 09/16/2015 8:06 pm

So I had something really strange happen today, pre accutane I had a crazy reaction to vyvanse, I would take 20mg and be running around like a crazy person. I took a 30mg pill today (this is the first time since taking accutane) and I felt nothing at all. Crazy! Vyvanse works by enhancing dopamine, clearly something is off with our dopamine

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MemberMember
5
(@maddy1234)

Posted : 09/16/2015 10:52 pm

Supplements are not effective because we cannot absorb anything because accutane destroyed our gut health, we could take a pile of pills and it won't fix a thing because we are not absorbing and digesting properly

 

After seeing tryingtohelp2014's post I looked up leaky gut syndrome, that is EXACTLY what is wrong! our 4 main Neurotransmitters are all made from amino acids from proteins (except Ach) we can't properly produce them because we are not absorbing the macronutrients required to make them. This is why we have no sex drive, anxiety, depression, and cannot pay attention. Macro mineral deficiencys also explain many of my specific symptoms such as poor mood, adrenal fatigue, dental decay, and a heart arrhythmia

 

Also earlier in the thread I read a post about Candida, this person was unable to rid themselves of it and it is because candida is caused by leaky gut, you cannot cure the candida completely without fixing the leaky gut.

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MemberMember
960
(@tryingtohelp2014)

Posted : 09/16/2015 11:34 pm

Supplements are not effective because we cannot absorb anything because accutane destroyed our gut health, we could take a pile of pills and it won't fix a thing because we are not absorbing and digesting properly

 

After seeing tryingtohelp2014's post I looked up leaky gut syndrome, that is EXACTLY what is wrong! our 4 main Neurotransmitters are all made from amino acids from proteins (except Ach) we can't properly produce them because we are not absorbing the macronutrients required to make them. This is why we have no sex drive, anxiety, depression, and cannot pay attention. Macro mineral deficiencys also explain many of my specific symptoms such as poor mood, adrenal fatigue, dental decay, and a heart arrhythmia

 

Also earlier in the thread I read a post about Candida, this person was unable to rid themselves of it and it is because candida is caused by leaky gut, you cannot cure the candida completely without fixing the leaky gut.

 

I have two theories on leaky gut.

 

1. leaky gut could be caused by the upregulation of GNMT enzyme using up all of our glycine stores. Glycine is one of the main amino acids used to heal leaky gut. anyone that comes on here and says all you have to do is eat healthy...drink some bone broth(bone broth is the glycine) is basically saying this.

the fix for this could be supplementing glycine itself and betaine (trimethylglycine 6-10 grams a day) This takes a few weeks to notice from what im reading. this is what im working on now.

 

2. a leaky gut could be caused by our bodies good bacteria being destroyed because they dont have their mnSOD cofactors for protection. accutane is conjugated by UDP transferases. the cofactor for this and mnSOD is manganese.

 

 

both of these could be the reason accutane causes IBS, Crohns etc. over time.

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MemberMember
299
(@macleod)

Posted : 09/17/2015 12:09 am

On 9/17/2015 at 9:06 AM, maddiegr said:

So I had something really strange happen today, pre accutane I had a crazy reaction to vyvanse, I would take 20mg and be running around like a crazy person. I took a 30mg pill today (this is the first time since taking accutane) and I felt nothing at all. Crazy! Vyvanse works by enhancing dopamine, clearly something is off with our dopamine

Yea, taking amphetamines post Accutane gets no effect out of me, other than insomnia. Same with pain killers of any type, no effect on dopamine, or mood whatsoever. Same with running long distance or exercising all day. Nothing!

Dopamine is definitely an issue.

This has me wondering. When others mentioned their experience with anti-depressants and ssri's post tane to no avail, they said they felt "spaced out" and just overall bad. What if we aren't reaping any of the benefits of a synthetic serotonin/dopamine drug whatsoever. What if something is askew inherently with the receptors or synapses post Accutane. What then? I am going to propose this hypothetical question to a doctor and see what he says. How would you treat this pharmacologically?

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TUDCA

I like the promising comments about this. And I think we are on the right tract. This is a bile acid? I refer you guys to this link again:

[Edited link out]

** For some reason the hyper link isn't working. Just Copy and Paste.

And please scroll down to 'Nuclear receptor superfamily'. Lo and behold...Bile Acids, Fatty Acids, and Isotretinoin are in the same family! So are estrogens and other hormones. I don't have the knowledge about this stuff, nor the intellectual capabilities, but I think this is the area we need to look in.

"Some transcription factors bind to specific sequences of DNA."

"Binding by the receptor activates or represses, as the case may be, the gene controlled by that promoter."

"It is through this mechanism that steroid hormone turn genes on (or off)."

I think gene transcription here should be the focus. It would explain the permanence of our side effects more logically, imo.

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MemberMember
8
(@timatron)

Posted : 09/17/2015 4:14 am

Hey guys,

 

just checking in, I'll be going on holidays and camping over the next couple weeks and won't be back in for a while. I totally forgot to tell everyone I largely cured the IBS I had, purely by accident.

 

With all the talk of candida and leaky gut on here which path I also went down years and years ago, it reminded me that a few months ago I largely fixed the loose bowels aka IBS that I have had for years since Accutane in 2002.

 

While researching other health issues I have, since IBS is not my biggest problem, I came across a website: http://selfhacked.com/2014/06/16/supplements-foods-exercise-right-type-th1-vs-th2-dominance/

 

It talks about Th1 and Th2 dominance in the immune system. I immediately thought this might be something key, and found an Australian company that sort of tests for most of the cytokines the above post talks about: http://nutripath.com.au/product/cytokine-panel-blood-serum-sst-level-1-or-2-test-code-4002-4004/

 

I went to my doctor and got the $300 blood test done. Here are my results:

 

Proinflammatory Th1 cytokines

 

IL 1 normal

IL 2 normal

IL 6 normal

IFNy- 45 massively high

TNFa normal

TNFb normal

 

Antiinflammatory Th2 cytokines

 

IL4 normal

IL5 normal

IL10- 6.3 slightly high

IL13- 8.6 high

TGFb normal

 

 

My doctor was concerned about the sky high Interferon gamma being 45 and recommended I take Fernblock http://www.iherb.com/Life-Extension-Enhanced-Fernblock-with-Red-Orange-Complex-30-Veggie-Caps/49717 which I did.

 

Well, unfortunately it did not help me with the health issues I wanted it to, however, after just two days I noticed it completely firmed up my bowels! Amazing. And it did so ever since then even though I only took it about once a week, and now have not taken it for a month!

 

Fernblock is actually sold as a skin supplement, but it is known to lower all Th1 cytokines especially IFNy. I have tried many things over the years for IBS- candida diet and supps for many years, which I didnt even have. Probiotics and all sorts of IBS supps. The only thing that helped is the FODMAP diet, mainly staying away from fructose and lactose. However even then I was sensitive to unknown things. But since lowering the IFNy with fernblock, my bowels have been amazingly firm. I have not yet tested to see whether I can introduce lactose or fructose. I am happy with the FODMAP diet for now.

 

Cheers and hopes this helps someone.

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MemberMember
960
(@tryingtohelp2014)

Posted : 09/17/2015 11:05 am

 

Hey guys,

 

just checking in, I'll be going on holidays and camping over the next couple weeks and won't be back in for a while. I totally forgot to tell everyone I largely cured the IBS I had, purely by accident.

 

With all the talk of candida and leaky gut on here which path I also went down years and years ago, it reminded me that a few months ago I largely fixed the loose bowels aka IBS that I have had for years since Accutane in 2002.

 

While researching other health issues I have, since IBS is not my biggest problem, I came across a website: http://selfhacked.com/2014/06/16/supplements-foods-exercise-right-type-th1-vs-th2-dominance/

 

It talks about Th1 and Th2 dominance in the immune system. I immediately thought this might be something key, and found an Australian company that sort of tests for most of the cytokines the above post talks about: http://nutripath.com.au/product/cytokine-panel-blood-serum-sst-level-1-or-2-test-code-4002-4004/

 

I went to my doctor and got the $300 blood test done. Here are my results:

 

Proinflammatory Th1 cytokines

 

IL 1 normal

IL 2 normal

IL 6 normal

IFNy- 45 massively high

TNFa normal

TNFb normal

 

Antiinflammatory Th2 cytokines

 

IL4 normal

IL5 normal

IL10- 6.3 slightly high

IL13- 8.6 high

TGFb normal

 

 

My doctor was concerned about the sky high Interferon gamma being 45 and recommended I take Fernblock http://www.iherb.com/Life-Extension-Enhanced-Fernblock-with-Red-Orange-Complex-30-Veggie-Caps/49717 which I did.

 

Well, unfortunately it did not help me with the health issues I wanted it to, however, after just two days I noticed it completely firmed up my bowels! Amazing. And it did so ever since then even though I only took it about once a week, and now have not taken it for a month!

 

Fernblock is actually sold as a skin supplement, but it is known to lower all Th1 cytokines especially IFNy. I have tried many things over the years for IBS- candida diet and supps for many years, w

Hey guys,

 

just checking in, I'll be going on holidays and camping over the next couple weeks and won't be back in for a while. I totally forgot to tell everyone I largely cured the IBS I had, purely by accident.

 

With all the talk of candida and leaky gut on here which path I also went down years and years ago, it reminded me that a few months ago I largely fixed the loose bowels aka IBS that I have had for years since Accutane in 2002.

 

While researching other health issues I have, since IBS is not my biggest problem, I came across a website: http://selfhacked.com/2014/06/16/supplements-foods-exercise-right-type-th1-vs-th2-dominance/

 

It talks about Th1 and Th2 dominance in the immune system. I immediately thought this might be something key, and found an Australian company that sort of tests for most of the cytokines the above post talks about: http://nutripath.com.au/product/cytokine-panel-blood-serum-sst-level-1-or-2-test-code-4002-4004/

 

I went to my doctor and got the $300 blood test done. Here are my results:

 

Proinflammatory Th1 cytokines

 

IL 1 normal

IL 2 normal

IL 6 normal

IFNy- 45 massively high

TNFa normal

TNFb normal

 

Antiinflammatory Th2 cytokines

 

IL4 normal

IL5 normal

IL10- 6.3 slightly high

IL13- 8.6 high

TGFb normal

 

 

My doctor was concerned about the sky high Interferon gamma being 45 and recommended I take Fernblock http://www.iherb.com/Life-Extension-Enhanced-Fernblock-with-Red-Orange-Complex-30-Veggie-Caps/49717 which I did.

 

Well, unfortunately it did not help me with the health issues I wanted it to, however, after just two days I noticed it completely firmed up my bowels! Amazing. And it did so ever since then even though I only took it about once a week, and now have not taken it for a month!

 

Fernblock is actually sold as a skin supplement, but it is known to lower all Th1 cytokines especially IFNy. I have tried many things over the years for IBS- candida diet and supps for many years, which I didnt even have. Probiotics and all sorts of IBS supps. The only thing that helped is the FODMAP diet, mainly staying away from fructose and lactose. However even then I was sensitive to unknown things. But since lowering the IFNy with fernblock, my bowels have been amazingly firm. I have not yet tested to see whether I can introduce lactose or fructose. I am happy with the FODMAP diet for now.

 

Cheers and hopes this helps someone.

 

 

Glycine treatment decreases proinflammatory cytokines and increases interferon-gamma in patients with type 2 diabetes

http://www.ncbi.nlm.nih.gov/pubmed/18852529

 

IFNy is really affected by glycine in this study, but they seem to say its a good cytokine? maybe your blood test is still showing the GNMT being super active? how long after stopping accutane did you have this blood test done?

 

 

 

 

also:

 

https://books.google.com/books?id=GjRLwrdyNGcC&pg=PA91&lpg=PA91&dq=cytokines+and+glycine&source=bl&ots=Ay80oGcD5P&sig=OZMutAZwaSHABZzzyx4sbmRvI_0&hl=en&sa=X&ved=0CBwQ6AEwADgKahUKEwjA7KSQuf7HAhWKTpIKHaF0Aac#v=onepage&q=cytokines%20and%20glycine&f=false

 

 

Quote
MemberMember
1
(@toosje)

Posted : 09/18/2015 8:29 am

Libido problem is just tired surrenals & nervous system by global acidity/toxicity & lack of nutrients absorption (cause the cells environment is too congestioned), nothing to do with accutane (but caused by it). It can be an excess of acidity/toxicity localized in the penis too. Since i cured myself from "accutane" my libido increased but the main thing is the sensation/pleasure in that area, who are 10 times stronger than before. Before i had orgasm but with no sensation, i feeled my penis in a strange cold/void area. Thing i noticed too is the structure of the penis, who is more "compact", don't know how to explain it. I put everyday castor oil on my penis & testicule, i find it very very helpful, this oil as an ability to stimulate the immune system & starting a detoxifying process very quickly. I saw it since after my first 3days of application i had my testicule skin who fell, typicaly a detoxification reaction (castor oil is just an oil, nothing irritant who can "kill" the skin directly). My libido & sensation increased even more after doing this. Jelq exercise seems to help detoxification + enhancing the structure too. But it's not magical, if you don't fix your general toxicity, your surrenals + nervous system will still be weakened and you won't have so much improve.

 

I signed up specifically to react to this post from 2013.

 

My story:

I have had 7 accutane courses from the ages 14 - 26 and am currently recently my eight course. The six or seventh course (can't remember) hit me very very hard in the libido and erectile dysfunction depertment. I had a long term relationship at the time, so it was very obvious for me to notice. To put it bluntly: before I would have instant erections and would have a hard time holding myself from coming, since then, I have to make a concious effort to get erections and a concious effort through focussing to come during sex.

 

It is like there is a knot between my brain and my penis, like it simply does not work anymore.

 

I am very very desperate to fix my cure, it has now been SIX years and my libido is still fkn trashed. Doctors in my country can't help me. I have done blood tests, I am fine.

 

Help me people. This problem is not in my head. I cannot even properly masturbate and when having sex I have a very hard time keeping it up and coming.

 

I am currently looking into jelqing but I'm open to any kind of advice.

 

Thanks

Quote
MemberMember
14
(@marlin15)

Posted : 09/18/2015 8:41 am

 

Libido problem is just tired surrenals & nervous system by global acidity/toxicity & lack of nutrients absorption (cause the cells environment is too congestioned), nothing to do with accutane (but caused by it). It can be an excess of acidity/toxicity localized in the penis too. Since i cured myself from "accutane" my libido increased but the main thing is the sensation/pleasure in that area, who are 10 times stronger than before. Before i had orgasm but with no sensation, i feeled my penis in a strange cold/void area. Thing i noticed too is the structure of the penis, who is more "compact", don't know how to explain it. I put everyday castor oil on my penis & testicule, i find it very very helpful, this oil as an ability to stimulate the immune system & starting a detoxifying process very quickly. I saw it since after my first 3days of application i had my testicule skin who fell, typicaly a detoxification reaction (castor oil is just an oil, nothing irritant who can "kill" the skin directly). My libido & sensation increased even more after doing this. Jelq exercise seems to help detoxification + enhancing the structure too. But it's not magical, if you don't fix your general toxicity, your surrenals + nervous system will still be weakened and you won't have so much improve.

 

I signed up specifically to react to this post from 2013.

 

My story:

I have had 7 accutane courses from the ages 14 - 26 and am currently recently my eight course. The six or seventh course (can't remember) hit me very very hard in the libido and erectile dysfunction depertment. I had a long term relationship at the time, so it was very obvious for me to notice. To put it bluntly: before I would have instant erections and would have a hard time holding myself from coming, since then, I have to make a concious effort to get erections and a concious effort through focussing to come during sex.

 

It is like there is a knot between my brain and my penis, like it simply does not work anymore.

 

I am very very desperate to fix my cure, it has now been SIX years and my libido is still fkn trashed. Doctors in my country can't help me. I have done blood tests, I am fine.

 

Help me people. This problem is not in my head. I cannot even properly masturbate and when having sex I have a very hard time keeping it up and coming.

 

I am currently looking into jelqing but I'm open to any kind of advice.

 

Thanks

 

 

 

honestly, you can't really blame anyone but yourself. you claim you have noticed it 6 years ago, and right now you are currently on your 8th course. there comes a time when you have to realize you need to stop. you can't complain about libido problems until you actually stop the drug. once you stop, it will probably do nothing, but you aren't making it harder for yourself.

Quote
MemberMember
1
(@toosje)

Posted : 09/18/2015 8:46 am

 

Libido problem is just tired surrenals & nervous system by global acidity/toxicity & lack of nutrients absorption (cause the cells environment is too congestioned), nothing to do with accutane (but caused by it). It can be an excess of acidity/toxicity localized in the penis too. Since i cured myself from "accutane" my libido increased but the main thing is the sensation/pleasure in that area, who are 10 times stronger than before. Before i had orgasm but with no sensation, i feeled my penis in a strange cold/void area. Thing i noticed too is the structure of the penis, who is more "compact", don't know how to explain it. I put everyday castor oil on my penis & testicule, i find it very very helpful, this oil as an ability to stimulate the immune system & starting a detoxifying process very quickly. I saw it since after my first 3days of application i had my testicule skin who fell, typicaly a detoxification reaction (castor oil is just an oil, nothing irritant who can "kill" the skin directly). My libido & sensation increased even more after doing this. Jelq exercise seems to help detoxification + enhancing the structure too. But it's not magical, if you don't fix your general toxicity, your surrenals + nervous system will still be weakened and you won't have so much improve.

 

I signed up specifically to react to this post from 2013.

 

My story:

I have had 7 accutane courses from the ages 14 - 26 and am currently recently my eight course. The six or seventh course (can't remember) hit me very very hard in the libido and erectile dysfunction depertment. I had a long term relationship at the time, so it was very obvious for me to notice. To put it bluntly: before I would have instant erections and would have a hard time holding myself from coming, since then, I have to make a concious effort to get erections and a concious effort through focussing to come during sex.

 

It is like there is a knot between my brain and my penis, like it simply does not work anymore.

 

I am very very desperate to fix my cure, it has now been SIX years and my libido is still fkn trashed. Doctors in my country can't help me. I have done blood tests, I am fine.

 

Help me people. This problem is not in my head. I cannot even properly masturbate and when having sex I have a very hard time keeping it up and coming.

 

I am currently looking into jelqing but I'm open to any kind of advice.

 

Thanks

 

 

 

honestly, you can't really blame anyone but yourself. you claim you have noticed it 6 years ago, and right now you are currently on your 8th course. there comes a time when you have to realize you need to stop. you can't complain about libido problems until you actually stop the drug. once you stop, it will probably do nothing, but you aren't making it harder for yourself.

 

I have started a new course 1 month ago because its needed. That does not take away the 6 year period where I did NOT use accutane, between the 7th and the 8th course, where my libido and erection quality are totally trashed. Also, ofcourse through the other accutane courses there was a proper off time. It just came back each time and my derm always put me on it again

 

Would like constructive advice

Quote
MemberMember
299
(@macleod)

Posted : 09/19/2015 12:07 pm

Lucas, you're just an instigator man. All summer man. It's really weird your infatuation with this.

Quote
MemberMember
13
(@alantookaccutanewow)

Posted : 09/19/2015 1:47 pm

 

Libido problem is just tired surrenals & nervous system by global acidity/toxicity & lack of nutrients absorption (cause the cells environment is too congestioned), nothing to do with accutane (but caused by it). It can be an excess of acidity/toxicity localized in the penis too. Since i cured myself from "accutane" my libido increased but the main thing is the sensation/pleasure in that area, who are 10 times stronger than before. Before i had orgasm but with no sensation, i feeled my penis in a strange cold/void area. Thing i noticed too is the structure of the penis, who is more "compact", don't know how to explain it. I put everyday castor oil on my penis & testicule, i find it very very helpful, this oil as an ability to stimulate the immune system & starting a detoxifying process very quickly. I saw it since after my first 3days of application i had my testicule skin who fell, typicaly a detoxification reaction (castor oil is just an oil, nothing irritant who can "kill" the skin directly). My libido & sensation increased even more after doing this. Jelq exercise seems to help detoxification + enhancing the structure too. But it's not magical, if you don't fix your general toxicity, your surrenals + nervous system will still be weakened and you won't have so much improve.

I signed up specifically to react to this post from 2013.

My story:

I have had 7 accutane courses from the ages 14 - 26 and am currently recently my eight course. The six or seventh course (can't remember) hit me very very hard in the libido and erectile dysfunction depertment. I had a long term relationship at the time, so it was very obvious for me to notice. To put it bluntly: before I would have instant erections and would have a hard time holding myself from coming, since then, I have to make a concious effort to get erections and a concious effort through focussing to come during sex.

It is like there is a knot between my brain and my penis, like it simply does not work anymore.

I am very very desperate to fix my cure, it has now been SIX years and my libido is still fkn trashed. Doctors in my country can't help me. I have done blood tests, I am fine.

Help me people. This problem is not in my head. I cannot even properly masturbate and when having sex I have a very hard time keeping it up and coming.

I am currently looking into jelqing but I'm open to any kind of advice.

Thanks

 

Welcome, at this time there is no cure. You can try horny goat weed and working on gut flora health by eating raw. I also took a very large amount of accutane.

Quote
MemberMember
299
(@macleod)

Posted : 09/19/2015 4:16 pm

I didn't quote your post. I've been here all year and you post the same prodding questions unrelated to the thread topic. If you don't want to admit that you continue to frequent this thread because it interests you, or amuses you, then I'm gonna have to ask that you make your own thread if you have questions about Accutane.

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MemberMember
7
(@accutainted4ever)

Posted : 09/19/2015 5:16 pm

 

Personally, I think it is the SSRI drugs that are more likely to cause long term sexual dysfunction than the Accutane. Most people who have taken Accutane for any length of time have also taken Prozac or some other type of SSRI to deal with Accutane induced depression.

Quote
MemberMember
5
(@asdfghjkl123456789)

Posted : 09/19/2015 5:25 pm

 

Personally, I think it is the SSRI drugs that are more likely to cause long term sexual dysfunction than the Accutane. Most people who have taken Accutane for any length of time have also taken Prozac or some other type of SSRI to deal with Accutane induced depression.

My sexual dysfunction is pretty bad from the accutane, without ever taking antidepressants.

Quote
MemberMember
359
(@dubya_b)

Posted : 09/20/2015 8:55 am

If you have sexual or reproductive problems from taking Accutane please send an email to the office of the FDA ombudman briefly describing your symptoms and asking why the types of side effects you experienced are not listed in the drug info:

 

http://www.fda.gov/AboutFDA/CentersOffices/OC/OfficeofScientificandMedicalPrograms/ucm197508.htm

 

Here is a direct email link: [email protected]

 

 

We might as well try calling for help while we're grasping at straws for a way out. I sent an email in August and actually recieved a reply, but it will take more than just one person. The post-finasteride community was able to get the risk of persistent sexual dysfunction added to the drug label of Propecia by prodding the FDA. Certainly we can do the same if we want our post-Accutane symptoms to be taken seriously.

 

Thanks!

Quote
MemberMember
1
(@a2person)

Posted : 09/21/2015 12:09 pm

Hello Everyone,

 

Short Version: Test results are in, I have low DHEA. My levels are at an abysmal 39 (they should be at 1500). I'm doing to start DHEA treatment ASAP and see if that affects my accutane symptoms. (Neurofeedback, covered by my insurance has helped correct all the cognitive-fatigue-emotional symptoms that I've had since taking this drug). I will keep people updated on my progress. Has anyone else taken the Rhein 24 Urine test? It assess subcomponents of the endocrine system that most blood-tests do not.

 

Best!

~A2

 

Recap/Long Version: I took accutane in 1998 and again in 2002. (Worst. Idea. EVER.) In March 2013, I underwent a QEEG brain scan for $200 (not covered by insurance) and I was diagnosed with diffuse levels of theta activity across my cortex (this corresponds to cortical idling, moodiness, brain fog, fatigue) as well as high beta in the back of my brain (which corresponds to anxiety). My insurance covered Neurofeedback therapy which completely corrected these cognitive symptoms. Physical symptoms remained.

 

In August 2015, I met with Dr. C in Lansing, MI who has treated and tracked many patients who believe they have had adverse reactions to accutane. (PM me if you'd like his contact info- many others users have cited him on this forum). While I had completed the usual rounds of hormonal bloodwork, which were all normal, he strongly, strongly, strongly advised me to do a Rhein 24 Hour Urine test (based out of a laboratory in Portland, OR). In his opinion, this is the ONLY test that matters. The Rhein test has been invaluable to identify hormonal abnormalities in men with sexual dysfunction. The test was easy to complete- I received it in the mail, did it at home, and mailed it to Portland, OR the next day. Three hours ago, Dr. C and I discussed the results of the Rhein Urine panel over the phone. All of my hormonal indicators were normal except for my DHEA which was appalling low at 39- which corresponds with many of my physical symptoms.

 

Of course, it's not possible to say whether accutane caused or augmented low DHEA. However, the Rhein panel is the first time I came across a good biomarker for accutane-related damage after several urologists and endocrinologists dismissed my symptoms. 5 Questions:

 

-Has anyone else completed the Rhein 24 Urine panel? (It costs a few hundred dollars- partially subsidized by my insurance, the rest was paid by my flexible health savings account)

-Has anyone else been diagnosed with low DHEA?

-Has anyone else been treated for low DHEA? If so what are the results?

-Has anyone undergone a QEEG brain scan? (costs $200).

-Has anyone undergone a SPECT imaging brain scan? (costs $3,000-$4,000).

 

In order to build a stronger case about the dangers, and the need to repair long term damage, from accutane, it is essential to identify abnormal indicators. I'm very curious if other people would get tested for the Rhein 24 Hour Urine test if we begin to see a set of common patterns related to accutane damage. (Perhaps there are 4 or 5 constellations of symptoms).

 

Not many people have spoken to the efficacy of Neurofeedback, or the Rhein test, so I wanted to make sure I put those 2 interventions out here for the public record. Best of luck!

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MemberMember
44
(@nick-ryan)

Posted : 09/21/2015 1:56 pm

(Neurofeedback, covered by my insurance has helped correct all the cognitive-fatigue-emotional symptoms that I've had since taking this drug).

 

I discovered this treatment online during a research binge, but had not heard whether it was efficacious or not. That is very good to hear!

 

I definitely recommend having cortisol/DHEA and all related hormones checked if you have physical symptoms related to libido/dysfunction. Thank you for this information and please do keep us updated on your progress as you undergo DHEA treatment.

 

Cheers

Quote
MemberMember
299
(@macleod)

Posted : 09/21/2015 2:06 pm

Makes sense, I always had a feeling it was something to do with our adrenal system. DHEA is related to the adrenals and is a steroid hormone of the nuclear receptor superfamily (retinoids too). Could also explain why it's very difficult to gain any muscle after Accutane as well as the plethora of skeletal and muscular imbalances that we have (arthritis for example).

 

How does one go about treating low dhea? Are those 'DHEA' supplements actual dhea? Or are you gonna get prescription stuff?

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