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any idea on how we should approach it?
I have a pretty good idea of how we should not approach it, and that would be to steer clear of snake oil. Snake oil would be anything that claims to cure cancer, or has to do with L. Rob Hubbard and Scientology 
, among other examples.
Beyond that, I think we need to focus more on the psychological aspect of what we're dealing with, which seems to be neglected in this topic. The ugly truth is that we have no known cure at the moment, and likely won't for a while, or possibly ever, so in the meantime we have to learn how to cope with our situation and move forward. Easier said than done, obviously.
I'm currently reading a self-help book called "A New Earth" by Eckhart Tolle. It's about dissolving the ego and how to stop being controlled by our thoughts and feelings. It's a bit out there at times but overall it's been helpful. Here's a passage that really resonated with me:
"It is not just people with good or near-perfect bodies who are likely to equate it with who they are. You can just as easily identify with a problematic body and make the body's imperfection, illness, or disability in to your identity. You may then think and speak of yourself as a sufferer of this or that chronic illness or disability. You receive a great deal of attention from doctors and others who constantly confirm to you your conceptual identity as a sufferer or a patient. You then unconsciously cling to the illness because it has become the most important part of who you perceive yourself to be. It has become another thought form with which the ego can identify. Once the ego has found and identity, it does not want to let go. Amazingly but not infrequently, the ego in search of a stronger identity can and does create illnesses to strengthen itself through them."
I say that we brainstorm potential problems, making sure not to get overly specific. Then we can perhaps make a list of a dozen or so feasible problems that can be divided and researched further by everyone. For example, the poster above (and others who wish to) can research and test his psychological theory. This is very similar to what we are already doing, but I just feel that we are all looking up the exact same things to no avail. I also think that we can rule out most blood tests/ hormone imbalances as the cause of the problem because we have already done extensive research on those topics. Think outside the box (but still be realistic) for problems. I have been thinking that some form of neuroimaging could be something different to try.?
After this, I think that the big step will be getting medical researchers to aid in our search because they if they learned more about this drug, they could hopefully help us a lot.
Bahaha. I had to lol at some of the posts. I'm not being facetious, or mean, i just had to laugh to myself cos we're so fucked. And some of us sound crazy...but, i do think we are making progress. this thread is progress.
I don't think i'm willing to accept any of my side effects ever to be honest. I think that would be the worst call for any of us to make. Living daily with intracranial pressure, tinnitus, neurological, cardiovascular, muscular, and skeletal issues is not cool in my book.
I tend to look at my life in 2 era's: pre-tane/post-tane. i think we are fortunate to have the memories pre-tane as we have something to compare to.
I honestly think that doctors do care about all of their patients, even pharma side effect ones, however in our case there really is nothing they can do but run the tests.
I think there is a lot of politics and funding involved in research and we are unlikely to get any real action in this lifetime unless we have a large number of protest ready people in one location.
Best scenario would be to complete our own website, create individual profiles for everyone, document and number everything. Send it to as many universities and medical people that we can.
On 9/9/2015 at 6:12 AM, jdav said:I have a pretty good idea of how we should not approach it, and that would be to steer clear of snake oil. Snake oil would be anything that claims to cure cancer, or has to do with L. Rob Hubbard and Scientology
Why is L. Ron Hubbard's niacin flush sauna detoxification protocol snake oil? It's actually the detoxification method that has the most science behind it (no, not scientology, hah).
Here's an example study showing its efficacy. The before and after measurements of toxin excretion is promising.
[Edited link out]
To those that bash things, please do your research before posting.
[Edited link out] - one of the best abstracting services in the US
[Edited link out]
- for those with limited time that want other people to do the research for you
I genuinely hope that having positive thoughts cures your physical ailments, however, I wouldn't rely solely on it. (To make it more effective, go get biofeedback therapy). I'm going to try anything and everything to get well, unless of course it has zero scientific merit.
We'll have that forum someday Macleod, just not as soon as planned. Apologies to anyone who was looking forward to the new post-Accutane sufferers forum that I had promised. There were some problems and time constraints in my personal life and I had to take a hiatus from working on it.
Hate to say it, but the pathologies of our side effects and potential remedies will need to be sorted out in a lab. We need to do whatever it takes to get to that point.
This will be short and simple. I've made multiple accounts and posted here before. Seems I can't remember my acne credentials. Surprised I could think of that big word after accutane. Well...
I took accutane in 2009. Never been the same mental problems and depression from my old self.
We are getting somewhere but here's what I promise works a good bit. Someone said magnesium and cannabis and yes those do help! Believe it or not i grind pot and put it in my water bottles by the spoonful. I dont smoke it because it gets me too high. Cook with marijuana too. Good stuff right but onto more than that...
Here's what I've been doing eating raw steaks and animals and vegetables from farmers markets. I have a great one locally. They're shit is still covered in dirt bloody raw and delicious. You again, can not buy it, in any store. Farmers market. its so fresh and live with bacteria. The animal I eat is from animals with an untouched field, fresh grass and weeds. Meat tastes like it should. eat well and raw and often. I hope everyone is making it through the next few years strong.
Alan
This is personal to me, so please feel free to shoot me a text we can talk accutane and recovery and life. What we have been eating etc.
[removed]
Have a good one. 
)
^ dafuq?
Some guy is claiming he's recovered from his propecia side effects by taking supplements to prevent Protein Misfolding and Endoplasmic Reticulum (ER) Stress which he believes to be the root cause of the side effects caused by 5AR inhibitor drugs Accutane/Finasteride/Propecia, as well as CFS (Chronic Fatigue Syndrome).
He does say he is still taking supplements, which in my book is generally not what I would consider a full recovery, but if he may well still be onto something, so it's not to be discounted. Worth checking out his post on the ATM forum, and also the thread he links to on phoenix rising. Lots of information to go through, I've just started to have a read through
[Edited link out]
QuoteQuite possibly, a key Element behind our problems has to do with Endoplasmic Reticulum (ER) stress, Misfolded Proteins and the the subsequent Unfolded Protein Response (UPR). Anything that impairs proper folding of Proteins within the ER ultimately leads to UPR and the Majority of our problems. At the end of the post you can find relevant References regarding why Methylation problems, Tetrahydrobiopterin Production Impairement, Celiac Disease, N-Linked Glycosylation impairment (among others), all create Stress within the ER and then signal a UPR.
QuoteMy problems originated right after quiting Finasteride (Propecia) for Hair loss. I believe that Chronic Fatigue Syndrome, Post-Finasteride Syndrome and cases of people with Permanent Side effects from Drug 'Accutane' share all the same mechanism.
Continuing on from above, a key supplement in this guys recovery seems to be TUDCA which is a type of bile acid that can have rejuvenating effects on the liver, specifically normalising liver enzymes (a study Tryingtohelp2014 posted up recently showed highly elevated liver enzyme GNMT [Glycine N-methyltransferase] activity post tane), so there could well be something in this..
Tauroursodeoxycholic acid, more commonly referred to as TUDCA, is a bile salt that is found natrually occurring in the body. When regular bile salts reach the intestines, they can be metabolized by bacteria into UDCA and then later bound to a Taurine molecule to become TUDCA.
TUDCA is a water-soluble bile salt, which is in contrast to regular bile salts possessing both water soluble and fat soluble ends and conferring a detergent effect. This is good for the bile salt's biological purpose (emulsifying fats in the intestines to help with absorption) but when bile acids back up in the liver, a clinical state called cholestasis which occurs when the liver is unhealthy, these bile salts can be damaging to cells by destroying the membranes and signalling for cell death. TUDCA and other water soluble bile salts like UDCA compete with this toxicity and thus indirectly protect cells from death.
Additionally, it seems that TUDCA is able to reduce stress to any cell's Endoplasmic Reticulum; an organelle in cells that serves as a highway from the nucleus out into the cytoplasm, and aids in folding proteins. Through reducing ER stress, TUDCA has been implicated in a wide range of beneficial metabolic effects such as reducing insulin resistance and diabetes, and being a neurological protection agent. However, usages of TUDCA beyond the liver are preliminary whereas usage of TUDCA for helping an already harmed liver is quite reliable as TUDCA is used in clinical settings (hospitals) for treating cholestasis.
What do you mean da fuq, I'm here with the best solution of eating properly, and BAM back to supplementation chatter. You can't supplement good gut flora/bacteria. Eat raw and push through the day. Give your immune system a challenge.
PS. I've tried the supplements too.
Good luckyall on feeling well.
Wow, great find Taned Out!
I just want to give an update on my trials with tianeptine (i'm using the sulfate version). It is definitely having a positive affect which I am fairly certain is not placebo (first week I wasn't too sure). I dissolve about 28-36 mg of tianeptine sulfate on my gums and feel zippier throughout the day. And not necessarily my body, because my heart rate never goes up, like say for instance drinking a coffee might yield. So it's definitely a mental "zippiness". Anxiety alleviates a bit and I can go out in public feeling more confident. Appetite slightly increases as well. I've also started to take in interest in rebuilding and upgrading the computers that I own, an old passion of mine. But, the fact that I can string together larger sentences and carry out longer conversations with people had me wanting to post about it to you guys. So, definitely not a cure. It doesn't really affect dopamine or bring any pleasure. But worth considering a try. The reports I have read (I actually have a Mega Upload link with hundreds of medical journal on Tianeptine, some nerd put it together, let me know in PM if u want the link) the reports have suggested a possible restructuring of the brain or rather an anti stress defense property of the drug affect on the brain. Worth a shot.
I was originally hesitant to share because this may sound a little strange but if it can maybe shed some light on our situation then I don't care. I took accutane about a year and a half ago for 6 months taking 20mg twice daily then upped the dosage to 40mg daily the last couple months. My side effects began after I stopped taking accutane, they included: numb fingers and toes, brain fog, severe depression, complete loss of sex drive, severe anxiety, receding gum lines as well as cavities, dry eyes, and stomach problems. I am a 20 year old female, and a few months ago I got pregnant unexpectedly and while pregnant my sex drive went back to normal and I felt happy, healthy, and normal again, this only lasted for 2 months, I couldn't keep the baby. I don't know what this means but I do know whatever my body was doing because of the change in hormones etc, made me go back to normal for a few months. It has been 4 months since then and I am back to being depressed, anxious, and everything I was dealing with before.
That is interesting and very promising. Perhaps Oxytocin and the pineal gland could be in play here. I always suspected estrogen and the steroid hormone receptors ([Edited links out]) Scroll down to 'nuclear super family'. It would cover the bases of Accutane and its gene transcription factors. But good to know these changes may not be permanent. Might have to get someone to look into this.
Continuing on from above, a key supplement in this guys recovery seems to be TUDCA which is a type of bile acid that can have rejuvenating effects on the liver, specifically normalising liver enzymes (a study Tryingtohelp2014 posted up recently showed highly elevated liver enzyme GNMT [Glycine N-methyltransferase] activity post tane), so there could well be something in this..
Excellent find! I read through the topic at PhoenixRising ( http://forums.phoenixrising.me/index.php?threads/unfolded-protein-response-and-a-possible-treatment-for-cfs.37244/ ), lot of intelligent folk around those parts. The idea seems to be that our bodies ability to produce normal levels of "heat shock proteins" was damaged, which results in significant stress to the "endoplasmic reticulum," which results in our proteins not being folded correctly. Protein misfolding is bad bad news, it's the reason for many diseases including Alzheimer's, Parkinson's, and type 2 diabetes:
In medicine, proteopathy refers to a class of diseases in which certain proteins become structurally abnormal, and thereby disrupt the function of cells, tissues and organs of the body. Often the proteins fail to fold into their normal configuration; in this misfolded state, the proteins can become toxic in some way (a gain of toxic function) or they can lose their normal function.
( https://en.wikipedia.org/wiki/Proteopathy )
Here's a relevant study about retinoids reducing heat shock proteins: http://www.ncbi.nlm.nih.gov/pubmed/9371525
Anyway, the treatment seems to be about reducing endoplasmic reticulum stress through supplementation and minor dietary changes, which you can find on the first page of the PhoenixRising link above. The author, who suffered from Post-Finasteride syndrome, says he saw major improvements with 10 days of starting the regimen, and was in complete remission after 2 months. He is still following the regimen to some degree so it can't be said that he is "cured," but this might be something worth looking into.
Could we have to much cortisone? It would fit to my symptoms.
I think so for some of us. I have high cortisol. Taking vitamin C helps me relax a lot.
Correct me if I'm wrong, but I don't think we have gotten any closer to a solution. I suggest we change the way we approach our problem.
I'm feeling better than this time last year.
any idea on how we should approach it?
I'm currently reading a self-help book called "A New Earth" by Eckhart Tolle. It's about dissolving the ego and how to stop being controlled by our thoughts and feelings. It's a bit out there at times but overall it's been helpful. Here's a passage that really resonated with me:
"It is not just people with good or near-perfect bodies who are likely to equate it with who they are. You can just as easily identify with a problematic body and make the body's imperfection, illness, or disability in to your identity. You may then think and speak of yourself as a sufferer of this or that chronic illness or disability. You receive a great deal of attention from doctors and others who constantly confirm to you your conceptual identity as a sufferer or a patient. You then unconsciously cling to the illness because it has become the most important part of who you perceive yourself to be. It has become another thought form with which the ego can identify. Once the ego has found and identity, it does not want to let go. Amazingly but not infrequently, the ego in search of a stronger identity can and does create illnesses to strengthen itself through them."
Please
I say that we brainstorm potential problems, making sure not to get overly specific. Then we can perhaps make a list of a dozen or so feasible problems that can be divided and researched further by everyone. For example, the poster above (and others who wish to) can research and test his psychological theory. This is very similar to what we are already doing, but I just feel that we are all looking up the exact same things to no avail. I also think that we can rule out most blood tests/ hormone imbalances as the cause of the problem because we have already done extensive research on those topics. Think outside the box (but still be realistic) for problems. I have been thinking that some form of neuroimaging could be something different to try.?
After this, I think that the big step will be getting medical researchers to aid in our search because they if they learned more about this drug, they could hopefully help us a lot.
My MRI showed no problems at all. But yours might, you never know.
Your idea sounds good to get small groups to research topics, but not many of us would have the drive and interest to research the topics handed to us. I think what we are already doing is probably the most productive, each person researches his own specific symptoms as we are all different, and then researches whatever disease possibility it could be from the ideas on this thread. I know that I am only going to research what interests me and not someones interest. My current interest are my 23andme genetics. If you like, feel free to research MAO A gene and how I can fix it, that'll save me a lot of time.
I don't think any researcher is going to research it for us except for ourselves, and a kind doctor that needs our money.
Some guy is claiming he's recovered from his propecia side effects by taking supplements to prevent Protein Misfolding and Endoplasmic Reticulum (ER) Stress which he believes to be the root cause of the side effects caused by 5AR inhibitor drugs Accutane/Finasteride/Propecia, as well as CFS (Chronic Fatigue Syndrome).
He does say he is still taking supplements, which in my book is generally not what I would consider a full recovery, but if he may well still be onto something, so it's not to be discounted. Worth checking out his post on the ATM forum, and also the thread he links to on phoenix rising. Lots of information to go through, I've just started to have a read through
Quite possibly, a key Element behind our problems has to do with Endoplasmic Reticulum (ER) stress, Misfolded Proteins and the the subsequent Unfolded Protein Response (UPR). Anything that impairs proper folding of Proteins within the ER ultimately leads to UPR and the Majority of our problems. At the end of the post you can find relevant References regarding why Methylation problems, Tetrahydrobiopterin Production Impairement, Celiac Disease, N-Linked Glycosylation impairment (among others), all create Stress within the ER and then signal a UPR.
>My problems originated right after quiting Finasteride (Propecia) for Hair loss. I believe that Chronic Fatigue Syndrome, Post-Finasteride Syndrome and cases of people with Permanent Side effects from Drug 'Accutane' share all the same mechanism.
This looks like a good possibility, have you tried the TUDCA? I couldn't find it on iherb.. Wasn't old Joe B back in the early pages raving on about this how much it helped his gut??
Wow, great find Taned Out!
I just want to give an update on my trials with tianeptine (i'm using the sulfate version). It is definitely having a positive affect which I am fairly certain is not placebo (first week I wasn't too sure). I dissolve about 28-36 mg of tianeptine sulfate on my gums and feel zippier throughout the day. And not necessarily my body, because my heart rate never goes up, like say for instance drinking a coffee might yield. So it's definitely a mental "zippiness". Anxiety alleviates a bit and I can go out in public feeling more confident. Appetite slightly increases as well. I've also started to take in interest in rebuilding and upgrading the computers that I own, an old passion of mine. But, the fact that I can string together larger sentences and carry out longer conversations with people had me wanting to post about it to you guys. So, definitely not a cure. It doesn't really affect dopamine or bring any pleasure. But worth considering a try. The reports I have read (I actually have a Mega Upload link with hundreds of medical journal on Tianeptine, some nerd put it together, let me know in PM if u want the link) the reports have suggested a possible restructuring of the brain or rather an anti stress defense property of the drug affect on the brain. Worth a shot.
Man this looks promising! I've tried SSRIs and they only made me feel spaced out fuzzy brained. I just googled it and it seems to increase the uptake of serotonin. Maybe thats exactly what I need. I dont know where to get it, it doesn't seem to be available in australia from a quick google search. I'll have to ask my doctor. But mood wise, Niacin and Vitamin C have helped a lot. But I am interested in it because it helped you string longer sentences together and thats exactly what I need. It's like I cant think properly when I'm speaking to others like having a blank mind constantly.
I was originally hesitant to share because this may sound a little strange but if it can maybe shed some light on our situation then I don't care. I took accutane about a year and a half ago for 6 months taking 20mg twice daily then upped the dosage to 40mg daily the last couple months. My side effects began after I stopped taking accutane, they included: numb fingers and toes, brain fog, severe depression, complete loss of sex drive, severe anxiety, receding gum lines as well as cavities, dry eyes, and stomach problems. I am a 20 year old female, and a few months ago I got pregnant unexpectedly and while pregnant my sex drive went back to normal and I felt happy, healthy, and normal again, this only lasted for 2 months, I couldn't keep the baby. I don't know what this means but I do know whatever my body was doing because of the change in hormones etc, made me go back to normal for a few months. It has been 4 months since then and I am back to being depressed, anxious, and everything I was dealing with before.
That is terrible about your pregnancy. But yes I think during pregnancy your anabolic hormones HcG, LH, estrogen and progesterone increase and thats why you felt good.
I definitely think some of us have health problems due to low anabolic hormones and high catabolic hormones. We are slowly catabolising our body which could be a cause of wrinkles and receding gums and sexual dysfunction and other problems.
On 9/12/2015 at 10:30 PM, jdav said:On 9/12/2015 at 5:45 AM, tanedout said:Continuing on from above, a key supplement in this guys recovery seems to be TUDCA which is a type of bile acid that can have rejuvenating effects on the liver, specifically normalising liver enzymes (a study Tryingtohelp2014 posted up recently showed highly elevated liver enzyme GNMT [Glycine N-methyltransferase] activity post tane), so there could well be something in this..
Excellent find! I read through the topic at PhoenixRising ( http://forums.phoenixrising.me/index.php?threads/unfolded-protein-response-and-a-possible-treatment-for-cfs.37244/ ), lot of intelligent folk around those parts. The idea seems to be that our bodies ability to produce normal levels of "heat shock proteins" was damaged, which results in significant stress to the "endoplasmic reticulum," which results in our proteins not being folded correctly. Protein misfolding is bad bad news, it's the reason for many diseases including Alzheimer's, Parkinson's, and type 2 diabetes:
In medicine, proteopathy refers to a class of diseases in which certain proteins become structurally abnormal, and thereby disrupt the function of cells, tissues and organs of the body. Often the proteins fail to fold into their normal configuration; in this misfolded state, the proteins can become toxic in some way (a gain of toxic function) or they can lose their normal function.
( https://en.wikipedia.org/wiki/Proteopathy )
Here's a relevant study about retinoids reducing heat shock proteins: http://www.ncbi.nlm.nih.gov/pubmed/9371525
Anyway, the treatment seems to be about reducing endoplasmic reticulum stress through supplementation and minor dietary changes, which you can find on the first page of the PhoenixRising link above. The author, who suffered from Post-Finasteride syndrome, says he saw major improvements with 10 days of starting the regimen, and was in complete remission after 2 months. He is still following the regimen to some degree so it can't be said that he is "cured," but this might be something worth looking into.
whoah!!!! this is VERY interesting on protein folding. from what im reading about protein folding...and the actual parts of the protein where it folds, it physically needs a tiny structured/flexible amino acid to be there, that being glycine. so if glycine is deficient, you get an unfolded protein response (UPR) ... now when you try to connect the GNMT /glycine problem that accutane causes , you can make a connection to this:
[Edited link out]
Glycine betaine and choline increase the amount of correctly folded citrate synthase Since chaperones not only protect proteins against thermal stress, but also stimulate protein renaturation, we investigated whether glycine betaine and choline can stimulate the folding of proteins. Citrate synthase, whose refolding is facilitated by several chaperones such as GroEL, DnaK, Hsp90 and small heat-shock proteins (Buchner et al., 1991; Richarme & Caldas, 1997), was chosen as substrate for this reaction. It was unfolded in the presence of 8 M urea, and allowed to refold upon dilution of the denaturant, in the absence or presence of several glycine betaine or choline concentrations (citrate synthase refolding in the presence of DnaK was studied in parallel).refolding yield of 01 M citrate synthase was increased from 9% in the absence of thermoprotectant, to 17% in the presence of 100 mM glycine betaine and 25% in the presence of 100 M choline (Fig. 3). In the presence of 300 mM glycine betaine or choline, citrate synthase renaturation rose to 29% and 35%, respectively. Thus, both glycine betaine and choline stimulate the renaturation of an unfolded protein. In similar conditions, the maximal renaturation of citrate synthase in the presence of DnaK was 33%, and it was obtained in the presence of 3 M DnaK (not shown). The glycine betaine concentration which stimulates the reactivation of an unfolded protein can be easily attained in the bacterial cytoplasm in many physiological conditions, especially during stationary phase or osmotic stress, by accumulation of either glycine betaine or choline (Conska & Epstein, 1996; Hengge-Aronis, 1996; Perroud & Le Rudelier, 1985, Lanfald & Strom, 1986).
http://www.ncbi.nlm.nih.gov/pubmed/11741308
Glycine at the 65th position plays an essential role in ATP-dependent protein folding by Archael group II chaperonin
Always follow the $$$ and patents:
http://www.google.com/patents/WO2006031931A2?cl=en
Particularly useful agents include chemical chaperones such as 4-phenyl butyrate (PBA), tauroursodeoxycholic acid (TUDCA), trimethylamine N-oxide (TMAO), glycerol, D2O, dimethylsufloxide, glycine betaine, methyl amines, and glycerophosphocholine. In particular, both PBA and TUDCA have been shown to regulate ER stress in animals as measured by the reduced phosphorylation of PERK
.....
Im still of the belief that anything accutane upregulates or downregulates depletes what we need to fix ourselves. ... in this case GNMT is one of the enzymes accutane upregulates the most. Glycine betaine = TMG
whoah!!!! this is VERY interesting on protein folding. from what im reading about protein folding...and the actual parts of the protein where it folds, it physically needs a tiny structured/flexible amino acid to be there, that being glycine. so if glycine is deficient, you get an unfolded protein response (UPR) ... now when you try to connect the GNMT /glycine problem that accutane causes , you can make a connection to this:
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).
Personally I'm convinced my problem (brain fog) stems from an imbalance in the gut, but for some there may be another reason
I believed my symptoms were candida related before I made the connection to Accutane. I tried all sorts of things including the Candida diet, Threelac, Lufenuron, Kolorex etc. and didn't see much improvement. Never tried Diflucan though. I also had a colonoscopy recently that came back negative, although I'm not sure if that would detect a candida overgrowth.
You're right though; while our symptoms were likely triggered in the same way, they have not necessarily manifested in the same way. Accutane can definitely affect gut health. Though, I'd think with a gut imbalance you'd have a lot more symptoms than brain fog--things like food intolerances, bloating, skin rashes etc.
SimpleMutton- did you tried anti candida-fungal/bacteriac/etc supps like ''candida support'', ''candex'' , golden seal or other herbs, for this issue?
Yes but they only worked for some days. I think they aren't strong enough and candida can easily build resistance against them. Threelac was the only thing that worked but it was too expensive and I had to stop using it (I needed 4/5 sachets per day).
By the way I tried lots of natural antifungals Oil of Oregano, Caprylic Acid, Formula SF722, Grapefruit Seed Extract, Garlic. Plus lots of enzymes dissolving biofilms and other substances. As I said they only worked for a few days.
I believe Diflucan (taken long term) is the only thing that can eradicate this problem (along with a well functioning immune system)...and after 4 years of suffering from brain fog I'm almost sure it's caused by a candida infection.
Diflucan is a fungistatic drug, it doesn't kill directly the candida but it prevents the fungus from multiplying. It's the immune system that have to kill the candida then.
In my country I can't buy diflucan online (without prescription) but other countries can do it....I'm still trying to convince doctors to prescribe it...
Have you tried water fasting?
I myself had little brain fog and panic attacks after accutane and after 3 days water fasting they were gone..
Personally I'm convinced my problem (brain fog) stems from an imbalance in the gut, but for some there may be another reason
I believed my symptoms were candida related before I made the connection to Accutane. I tried all sorts of things including the Candida diet, Threelac, Lufenuron, Kolorex etc. and didn't see much improvement. Never tried Diflucan though. I also had a colonoscopy recently that came back negative, although I'm not sure if that would detect a candida overgrowth.
You're right though; while our symptoms were likely triggered in the same way, they have not necessarily manifested in the same way. Accutane can definitely affect gut health. Though, I'd think with a gut imbalance you'd have a lot more symptoms than brain fog--things like food intolerances, bloating, skin rashes etc.
What symptoms do you have?
Here is mine:
- I can't concentrate and focus on anything for more than 5 minutes.
-I have problems in finding the right word to say...this happens a lot and basically I'm at a point where I can't put a full sentence together without stopping mid sentence.
-My short term memory has been vastly affected. I can read something and forget 90% of it 1 hours later. I'm in university so you can imagine how debilitating this is...my career will be ruined if I won't fix it.
-I have problems to put thoughts into speech
-I have problems organizing my thoughts
-I sometimes have problems understanding what I read. For example I may read a very simple word but for some reasons I don't grasp the meaning of that word quickly. It takes 30/60 seconds for my brain to process the word. Very difficult to explain.
-I get tired very fast performing mental tasks.
All these problems started in the summer of 2011 (I was 20yo) after a cure with accutane. I didn't have any of these problems before (not even slightly).
I linked these problems to everything....alzheimer, adhd, lyme disease, vitamin deficiency, bad diet, stress, low testosterone, metal toxicity, histamine toxicity, bacterial infection, viruses, candida, parasites, low oxygen, chronic inflammation, mitochondrial dysfunction and other illnesses.
Now, after four years, and after trying tons of things I'm almost convinced it's because of candida (caused by accutane and antibiotics). Some time ago I thought brain fog was permanent but in the last year I had brief periods in which my brain fog almost disappeared. Reading online there are other experiences of people that have overcome their brain fog, so I'm now convinced that brain fog isn't permanent at all. It can be cured but we must figure out the real problem.
As soon as I can have a prescription of diflucan I'll try it and I'll see if my doubts are real. Other things (natural antifungals, candida diet and other bullshit) don't work for a bad candida overgrowth. Searching online it appears quite a lot of people cured their brain fog after diflucan.....
I too thought candida couldn't be the cause because I don't have any gut problems. But it appears that each person exhibit different symtoms. Some people with candida don't experience brain fog, whilst some others don't experience gut problems. If only I could try diflucan.....
SimpleMutton- did you tried anti candida-fungal/bacteriac/etc supps like ''candida support'', ''candex'' , golden seal or other herbs, for this issue?
Yes but they only worked for some days. I think they aren't strong enough and candida can easily build resistance against them. Threelac was the only thing that worked but it was too expensive and I had to stop using it (I needed 4/5 sachets per day).
By the way I tried lots of natural antifungals Oil of Oregano, Caprylic Acid, Formula SF722, Grapefruit Seed Extract, Garlic. Plus lots of enzymes dissolving biofilms and other substances. As I said they only worked for a few days.
I believe Diflucan (taken long term) is the only thing that can eradicate this problem (along with a well functioning immune system)...and after 4 years of suffering from brain fog I'm almost sure it's caused by a candida infection.
Diflucan is a fungistatic drug, it doesn't kill directly the candida but it prevents the fungus from multiplying. It's the immune system that have to kill the candida then.
In my country I can't buy diflucan online (without prescription) but other countries can do it....I'm still trying to convince doctors to prescribe it...
Have you tried water fasting?
I myself had little brain fog and panic attacks after accutane and after 3 days water fasting they were gone..
No, I haven't tried water fasting yet...I'll give it a try if diflucan won't work
On 7/17/2015 at 6:06 AM, Modeaa said:On 7/17/2015 at 4:32 AM, tryingtohelp2014 said:SCD1 converts saturated fatty acids into monounsaturated fatty acids using palmitoyl- and stearoyl-CoA as preferred substrates to generate palmitoleic (9-16:1) and oleic acid (9-18:1), respectively. Both are essential components of triglycerides and more complex lipids found in lipoproteins and eukaryotic membranes
Interestingly, SCD1 deficiency leads to disruption of the epidermal lipid barrier most likely caused by the strong reduction of epidermis-specific ceramides, one of the crucial lipid fraction in mammalian skin.6The dramatic phenotype seen in SCD1 mutants highlights the importance of unsaturated fatty acids for sebaceous gland formation and functional skin barrier
http://www.ncbi.nlm.nih.gov/pubmed/22211892
Through the generation of various mouse models of SCD1 deficiency, we have come to understand that SCD1 plays a role, directly or indirectly, in diverse metabolic processes, including lipogenesis, fatty acid oxidation, insulin signaling, thermogenesis, and inflammation
...... so wouldnt taking palmitoleic (9-16:1) and oleic acid (9-18:1) bypass the downregulated SCD1??
maybe. see thia regurding oleic acid
http://www.ncbi.nlm....pubmed/15066988
acording to this fructose alone help, but more when oleic is added.
about palmitoleic - from an earlier post i mad,
[Edited link out]
he had a problem of dry eyes which he atribue to accutane,
read also his update from 2015, the fact that he speaks about an increased oil production from all of his oil glands(not just the eyes) and increased acne is interesting. is it somehow reverese an accutane dammage to the oil glands/sebaceous glands?
from the science aspect-the importent molucela might be ''Palmitoleic acid, or (9Z)-hexadec-9-enoic acid, is an an omega-7 monounsaturated fatty acid'' (wiki)
''
he used seabuckthorn oil which has one of the highest sources of Palmitoleic acid, but also other fatty acids which mighe block the action a bit?? isolated palmitoleic acid is also available, but it worried me more cause the fact that it is isolated one nutrient, who know,
anyaway, the seabuckthorn oil worked for that guy, and other one post there that he used macademia oil which is the other highest natural source of palmitoleic acid acording to wilki, it he sais he see a big improvements.
Modeaa: another study suggesting high dose Glycine and trimethylglycine.
http://www.toxicolres.org/articleView.toxmut?ano=TOXICR_2013_v29n1_7
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. Previous studies have reported that fatty acid composition, rather than fatty acid oversupply, is related to insulin sensitivity (2627). In this study, we observed significantly reduced serum insulin levels and HOMA-IR after betaine supplementation. Betaine supplementation also reduced the expression of PGC-1 mRNA, which correlates well with hepatic gluconeogenesis (28). A recent study reported that betaine reduced fasting glucose and insulin and reversed hepatic insulin resistance in mice with nonalcoholic fatty livers (16).
As an osmolyte, betaine increases the water retention of cells and acts like a chaperone to stabilize protein structures against environmental stress Betaine reduced ER and oxidative stress in the livers of db/db mice. Consistently, betaine supplementation has a protective effect against oxidative stress and steatosis in the livers of rats fed a high-fat diet (14), suggesting a role for betaine in increased glutathione synthesis by supplying its substrates, cysteine and glycine. (2930). We also observed that ER stress in the cortices and hippocampi of db/db mice was alleviated by betaine supplementation. db/db mice have been shown to be more sensitive to seizure-induced hippocampal damage than wildtype, suggesting a role for leptin receptors in cell survival signaling (31). Furthermore, betaine supplementation alleviated JNK activation and tau hyperphosphorylation in db/db mice. Previous studies reported that increased tau hyperphosphorylation in the brains of db/db mice (32) and streptozotocin- mediated diabetic mice (33).
In conclusion, betaine supplementation improved serum insulin and triglyceride levels of db/db mice. We also observed the alleviation of tau hyperphosphorylation in the brains of db/db mice fed a betaine-supplemented diet. The ER and oxidative stress evident in db/db mice were alleviated by betaine, which may have contributed to the beneficial effects of betaine. Therefore, betaine may have potential application in the treatment of type 2 diabetes.
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.