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Repairing the long-term damage from Accutane

 
MemberMember
359
(@dubya_b)

Posted : 01/27/2015 6:01 pm

Modeaa- Thanks! This was a well put-together connection:

''
act as competitive inhibitor of the 3-hydroxysteroid dehydrogenase oxidative activity of the enzyme. This can potentially explain how isotretinoin, the active ingredient is Roaccutane (Accutane), can suppress sebaceous glands and be used for severe acne treatment''

it's leed to the sexual disfunction when you see what 3-hydroxysteroid dehydrogenase is also needed for http://en.wikipedia.org/wiki/3-alpha-HSD
''It is known to be necessary for the synthesis of the endogenous neurosteroids allopregnanolone, THDOC, and 3-androstanediol. It is also known to catalyze the reversible conversion of 3-androstanediol (5-androstane-3,17-diol) to dihydrotestosterone (DHT) (5-androstan-17-ol-3-one) and vice-versa.%5B3%5D''

i didn't looked in a lot more but some baz words which popped alot on accutane Discussions are on this qoute and if i looked in the allopregnanolone link and there you can see how it is play a role on other things which are not goof after accutane ''Allopregnanolone possesses a wide variety of effects, including, in no particular order, antidepressant, anxiolytic, stress-reducing, rewarding,%5B16%5Dprosocial,%5B17%5Dantiaggressive,%5B18%5Dprosexual,%5B17%5Dsedative, pro-sleep,%5B19%5Dcognitive and memory-impairing, analgesic,%5B20%5Danesthetic, anticonvulsant, neuroprotective, and neurogenic effects.%5B1%5D''

The effects of Accutane on 5-AR and 3a-HSD activity may very well result in decreased neurosteroid levels, including a deficit of allopregnanolone, a steroid essential for neurogenesis in the hippocampus region of the brain.

This overlap in effects likely explains how so many of us end up with side effects similar to finasteride victims.

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MemberMember
76
(@yetanotheraccutanevictim)

Posted : 01/27/2015 8:23 pm

Does anyone else have CNS issues? I have twitching in my feet, hands, and fingers nonstop everyday.

Also, anyone with fibromyalgia or muscle pain? I have INTENSE muscle pain everywhere with knots and fibrous tissue throughout my body.

I'm not sure if this is an accutane problem or if I developed something more severe because of accutane.

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MemberMember
960
(@tryingtohelp2014)

Posted : 01/28/2015 12:12 pm

Does anyone else have CNS issues? I have twitching in my feet, hands, and fingers nonstop everyday.

Also, anyone with fibromyalgia or muscle pain? I have INTENSE muscle pain everywhere with knots and fibrous tissue throughout my body.

I'm not sure if this is an accutane problem or if I developed something more severe because of accutane.

1000% you have a MG magnesium deficiency. take a few hundred Mgs of MG citrate and see how you feel. your muscles are firing and not releasing (knots). your CNS is in a very excited state (twitching). Magnesium should help this.

This is another mineral that accutane robs your body of imo.

For all of you talking about adrenal fatigue:

http://breakingmuscle.com/health-medicine/the-top-3-supplements-for-improved-adrenal-health

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Artaemis, Nick Ryan, Artaemis and 3 people reacted
MemberMember
76
(@yetanotheraccutanevictim)

Posted : 01/28/2015 1:55 pm

@tryingtohelp2014 I appreciate you returning to the forum. it's nice to have someone around here who is really knowledgeable.

I also assumed magnesium so I did a few different tests. I had a spectracell micronutrient evaluation (where they look intracellularly) done which showed my magnesium at 56% while the reference range was 37%. I was well repleted according to that.

also had another RBC magnesium test done by labcorp which showed 5.6mg/dL. normal range is 4.2-6.8mg/dL.

and I had a serum analysis which displayed 2.1mg/dL. normal range -> 1.5-2.75mg/dL.

other electrolytes look normal as well.

on top of all that, for the past 8 months, I have taken over 300mg of magnesium glycinate (designs for health) daily. I have recently switched to magnesium citrate (natural calm brand - fizzy powder). been taking about 500mg of that. also some days I rub transdermal mg on my skin at night (magnegel by DFH). nothing has had an effect on my twitching.

Not sure if this could still be a magnesium problem after reviewing all of that. I'm suspecting a systemic infection like spirochetes (lyme as an example) which can dig into your neural tissue and cause problems. or it could be some sort of nerve impingement in my neck causing systemic disturbances.

lastly, I got an organic acids test from great plains labs which showed I was excreting a very high amount of oxalic acid in my urine. so oxalate crystals are absorbing through my gut obviously. went an entire year where I ate 2-3 sweet potatoes a day (extremely high in oxalates). not sure if that could be deposited in my tissues which would cause these problems. "trying low oxalates group" on yahoo has info on this (requires an account to visit). oxalates also bind up magnesium so perhaps I could be having normal amounts of magnesium show up on the test but it is in an unusable, bound up form. I wish doctors were useful for finding out health problems...

EDIT: I noticed my twitching got a lot worse when I started taking antimicrobial herbs and things (peppermint oil, wild oil of oregano, berberine, mastic gum, colloidal silver, Alli-C [garlic extract], grape seed extract etc) which could indicate some sort of herxheimer reaction due to killing off the systemic infection BUT at the same time, I started an EXTREMELY ketogenic diet which tends to dehydrate you (loss of electrolytes) AND I started getting in a sauna for 30-60min each day (even more of a mineral loss). so not exactly 100% sure what exactly it could be. About to start a fast where I'm going to be going as long as I can without any food. this fast might reveal the oxalates as being the culprit as I would have a major dumping (excretion) of oxalates out of the tissues. will see what happens...

EDIT2: I am also bathed in non native EMF from wifi 24/7 along with the use of a really powerful microwave. I have an EMF detector which shows that I am covered at all times... nothing I can do to change it. perhaps it's affecting the charge on the cell membranes which would screw up the sodium/potassium pump and could mess with potassium & calcium efflux/influx. not too familiar with a lot of these concepts yet. and remember, I have very poor, sluggish blood flow. whatever is affecting my muscles is also affecting my heart (which is a muscle obviously) or it could be the other way around - something is fudging up my heart which screws up blood flow and is preventing adequate nutrient/oxygen partitioning to my muscles. just so much to think about that could be causing this... might be getting $600 worth of labs done at IGeneX for lyme & coinfections. running out of things to try

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MemberMember
960
(@tryingtohelp2014)

Posted : 01/28/2015 2:40 pm

@tryingtohelp2014 I appreciate you returning to the forum. it's nice to have someone around here who is really knowledgeable.

I also assumed magnesium so I did a few different tests. I had a spectracell micronutrient evaluation (where they look intracellularly) done which showed my magnesium at 56% while the reference range was 37%. I was well repleted according to that.

also had another RBC magnesium test done by labcorp which showed 5.6mg/dL. normal range is 4.2-6.8mg/dL.

and I had a serum analysis which displayed 2.1mg/dL. normal range -> 1.5-2.75mg/dL.

other electrolytes look normal as well.

on top of all that, for the past 8 months, I have taken over 300mg of magnesium glycinate (designs for health) daily. I have recently switched to magnesium citrate (natural calm brand - fizzy powder). been taking about 500mg of that. also some days I rub transdermal mg on my skin at night (magnegel by DFH). nothing has had an effect on my twitching.

Not sure if this could still be a magnesium problem after reviewing all of that. I'm suspecting a systemic infection like spirochetes (lyme as an example) which can dig into your neural tissue and cause problems. or it could be some sort of nerve impingement in my neck causing systemic disturbances.

lastly, I got an organic acids test from great plains labs which showed I was excreting a very high amount of oxalic acid in my urine. so oxalate crystals are absorbing through my gut obviously. went an entire year where I ate 2-3 sweet potatoes a day (extremely high in oxalates). not sure if that could be deposited in my tissues which would cause these problems. "trying low oxalates group" on yahoo has info on this (requires an account to visit). oxalates also bind up magnesium so perhaps I could be having normal amounts of magnesium show up on the test but it is in an unusable, bound up form. I wish doctors were useful for finding out health problems...

EDIT: I noticed my twitching got a lot worse when I started taking antimicrobial herbs and things (peppermint oil, wild oil of oregano, berberine, mastic gum, colloidal silver, Alli-C [garlic extract], grape seed extract etc) which could indicate some sort of herxheimer reaction due to killing off the systemic infection BUT at the same time, I started an EXTREMELY ketogenic diet which tends to dehydrate you (loss of electrolytes) AND I started getting in a sauna for 30-60min each day (even more of a mineral loss). so not exactly 100% sure what exactly it could be. About to start a fast where I'm going to be going as long as I can without any food. this fast might reveal the oxalates as being the culprit as I would have a major dumping (excretion) of oxalates out of the tissues. will see what happens...

EDIT2: I am also bathed in non native EMF from wifi 24/7 along with the use of a really powerful microwave. I have an EMF detector which shows that I am covered at all times... nothing I can do to change it. perhaps it's affecting the charge on the cell membranes which would screw up the sodium/potassium pump and could mess with potassium & calcium efflux/influx. not too familiar with a lot of these concepts yet. and remember, I have very poor, sluggish blood flow. whatever is affecting my muscles is also affecting my heart (which is a muscle obviously) or it could be the other way around - something is fudging up my heart which screws up blood flow and is preventing adequate nutrient/oxygen partitioning to my muscles. just so much to think about that could be causing this... might be getting $600 worth of labs done at IGeneX for lyme & coinfections. running out of things to try

i dont think transdermal magnesium oil works. if we have a gut problems due to accutane...maybe try the old staple of an epsom salt bath and see if that helps. I dont trust any blood test unless it shows extreme depletion. symptoms point to Mg.

 

The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for "normal" results.

http://www.ncbi.nlm.nih.gov/pubmed/20170394

Systemic magnesium deficiency disclosed by magnesium loading test in patients with essential hypertension.

Quote
MemberMember
76
(@yetanotheraccutanevictim)

Posted : 01/28/2015 8:20 pm

On 1/29/2015 at 3:40 AM, tryingtohelp2014 said:
On 1/29/2015 at 2:55 AM, yetanotheraccutanevictim said:

@tryingtohelp2014 I appreciate you returning to the forum. it's nice to have someone around here who is really knowledgeable.

I also assumed magnesium so I did a few different tests. I had a spectracell micronutrient evaluation (where they look intracellularly) done which showed my magnesium at 56% while the reference range was 37%. I was well repleted according to that.

also had another RBC magnesium test done by labcorp which showed 5.6mg/dL. normal range is 4.2-6.8mg/dL.

and I had a serum analysis which displayed 2.1mg/dL. normal range -> 1.5-2.75mg/dL.

other electrolytes look normal as well.

on top of all that, for the past 8 months, I have taken over 300mg of magnesium glycinate (designs for health) daily. I have recently switched to magnesium citrate (natural calm brand - fizzy powder). been taking about 500mg of that. also some days I rub transdermal mg on my skin at night (magnegel by DFH). nothing has had an effect on my twitching.

Not sure if this could still be a magnesium problem after reviewing all of that. I'm suspecting a systemic infection like spirochetes (lyme as an example) which can dig into your neural tissue and cause problems. or it could be some sort of nerve impingement in my neck causing systemic disturbances.

lastly, I got an organic acids test from great plains labs which showed I was excreting a very high amount of oxalic acid in my urine. so oxalate crystals are absorbing through my gut obviously. went an entire year where I ate 2-3 sweet potatoes a day (extremely high in oxalates). not sure if that could be deposited in my tissues which would cause these problems. "trying low oxalates group" on yahoo has info on this (requires an account to visit). oxalates also bind up magnesium so perhaps I could be having normal amounts of magnesium show up on the test but it is in an unusable, bound up form. I wish doctors were useful for finding out health problems...

EDIT: I noticed my twitching got a lot worse when I started taking antimicrobial herbs and things (peppermint oil, wild oil of oregano, berberine, mastic gum, colloidal silver, Alli-C [garlic extract], grape seed extract etc) which could indicate some sort of herxheimer reaction due to killing off the systemic infection BUT at the same time, I started an EXTREMELY ketogenic diet which tends to dehydrate you (loss of electrolytes) AND I started getting in a sauna for 30-60min each day (even more of a mineral loss). so not exactly 100% sure what exactly it could be. About to start a fast where I'm going to be going as long as I can without any food. this fast might reveal the oxalates as being the culprit as I would have a major dumping (excretion) of oxalates out of the tissues. will see what happens...

EDIT2: I am also bathed in non native EMF from wifi 24/7 along with the use of a really powerful microwave. I have an EMF detector which shows that I am covered at all times... nothing I can do to change it. perhaps it's affecting the charge on the cell membranes which would screw up the sodium/potassium pump and could mess with potassium & calcium efflux/influx. not too familiar with a lot of these concepts yet. and remember, I have very poor, sluggish blood flow. whatever is affecting my muscles is also affecting my heart (which is a muscle obviously) or it could be the other way around - something is fudging up my heart which screws up blood flow and is preventing adequate nutrient/oxygen partitioning to my muscles. just so much to think about that could be causing this... might be getting $600 worth of labs done at IGeneX for lyme & coinfections. running out of things to try

i dont think transdermal magnesium oil works. if we have a gut problems due to accutane...maybe try the old staple of an epsom salt bath and see if that helps. I dont trust any blood test unless it shows extreme depletion. symptoms point to Mg.

The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for "normal" results.

http://www.ncbi.nlm.nih.gov/pubmed/20170394

Systemic magnesium deficiency disclosed by magnesium loading test in patients with essential hypertension.

regarding the first study, I know that serum mg is highly inaccurate. I was just listing that to show yet another test I had received. the ones that are pretty accurate are the intracellular mg erythrocyte test, which I had 2 of, both indicating mg repletion. I wasn't borderline low or anything. I had plenty according to those tests. and I have been treating myself like I do have mg deficiency regardless but have not noticed a single difference/improvement. I agree that symptoms indicate a deficiency but I really don't think that's the case. I guess one thing I could add is epsom salt soaks. I hate bathing in chlorinated/fluoridated water though.

and interesting study about the mg given to hypertensive people. "These results suggest that a systemic Mg deficiency, which is undectectable by serum or erythrocyte Mg determination, may exist in patients with essential hypertension." just throwing out that I have severe hypotension. I guess you could argue that the study shows that RBC mg is not an accurate measure but I just don't see what else I could do besides the epsom salts. and if I was deficient, I'm pretty sure I would notice improvements over the course of 8 months supplementing a high dose of absorbable mg. maybe I need to ingest 10,000mg each day along with epsom salt baths and transdermal haha. good post on mg for anyone interested: [Edited link out]

perhaps I should look into getting an EXA test. out of $$$ though

also, I do have vit b6 deficiency that I can't correct. that could also be related to my CNS problems. but it's weird how I can't bring the levels up and hold them steady.

thanks for posting the studies and your feedback. making any progress with your Mn protocol?

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MemberMember
20
(@cbar1516)

Posted : 01/30/2015 4:05 pm

Guess who got diagnosed with Crohn's today !!! :D

 

Makes me miss the good old times, when I was just pissed about the hairloss, wrinkling, and devastated mental health.

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MemberMember
157
(@chico-esposito)

Posted : 01/30/2015 7:28 pm

Guess who got diagnosed with Crohn's today !!!

 

Makes me miss the good old times, when I was just pissed about the hairloss, wrinkling, and devastated mental health.

Well i suppose it's good that you've got a diagnosis now. Did you have blood in your stool or any obvious signs before you got checked out? because i have poor digestion myself and was wondering about getting that checked out myself.

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MemberMember
76
(@yetanotheraccutanevictim)

Posted : 01/30/2015 9:08 pm

 

Guess who got diagnosed with Crohn's today !!!

 

Makes me miss the good old times, when I was just pissed about the hairloss, wrinkling, and devastated mental health.

Well i suppose it's good that you've got a diagnosis now. Did you have blood in your stool or any obvious signs before you got checked out? because i have poor digestion myself and was wondering about getting that checked out myself.

@Cbar

How did you get diagnosed? Did they actually look inside and see damage? Very interested in what is going on with you.

I went back and saw this post by you:

"I am not healed. If anything, I'm getting worse. That said, I have learned a thing or two that anyone else suffering from PAS might benefit from.

 

1) Diet!!! My diet since being on Accutane has been abysmal, which I'm pretty sure has contributed to my currently declining health."

Has your diet still been abysmal leading up to the diagnosis? I highly recommend you eliminate ALL grains immediately for quick relief if you haven't already. Start making bone broth and avoid nuts/seeds like the plague. Only eat soft foods like egg yolks, slow cooked meats, and soft vegetables. Get on the SCD or GAPS protocol. Make homemade fermented foods like sauerkraut or water kefir. Meditate and get adequate sun exposure. Eat loads of organ meats, especially heart and liver.

Hope you aren't suffering right now. Let us know if you need any help with anything

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MemberMember
0
(@djwra)

Posted : 01/31/2015 5:09 pm

Hey there to ya all

just to lazy atm to introduce myself, taken accutane in early 2000's, and still suffering from its usage

my main symptoms are lowered due to DIET only, my main issue was redness, sociophobia, anxiety, and flushing which I overcame in great extent by avoiding refined food

my No1 advice > try RAW food diet for a couple days and stay away from HISTAMINE reach foods

my No2 wisdom > we all have suffered of acne in the first place, and it is the mere effect of the LIVER problem (possible metal toxicity or somethin).. so clean your liver (BEETROOT JUICE + LEMON + APPLE = MIRACLE, try it)

but my greatest issue, still unresolved, is premature ejaculation and not being able to gain weight, so wonder how have you been dealing these?

thanks,

milos

Hey, mad scientists. Came across an idea that seemed appropriately cracked enough for this thread.

Who's heard of or experimented with FMT (fecal matter transplants)?

Hey, mad scientists. Came across an idea that seemed appropriately cracked enough for this thread.

Who's heard of or experimented with FMT (fecal matter transplants)?

as ACCUTANE is strong AntiBiotic, we surely have depleted our NORMAL GUT FLORA, and no ProBiotic supplement is able to repopulate our guts (as I have researched so far), and I was thinking of the same - fmt, but sounded too weird (and still does), even for an open minded person as I,... so was thinking of maybe taking horse manure instead? parasites are worrying me, though

cheers

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MemberMember
223
(@gladiatoro)

Posted : 02/01/2015 1:27 pm

Crohn's disease is a bad one and linked to Accutane + antibiotics , either or could do it antibiotics more likely though . Thank God I do not have stomach problems I took antibiotics for a few weeks once that was over 20 years ago over use of those will surely destroy the immune system which is mostly located in the gut .

Antibiotics should only be used under extreme cirumstances ie pneumonia or something of the sort when all else NATURAL has been tried and key word for a SHORT period of time . They should not be handed out like candy as most MD's do . Go to natural news and type in Crohn's Disease in the search bar .

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MemberMember
20
(@cbar1516)

Posted : 02/01/2015 8:51 pm

I'd written up a huge post that my phone deleted right before I submitted it. Damn.

 

Long story short, my Crohn's is quite "atypical". Despite knowing that Accutane has been linked with it, I dismissed it as my problem because of an absence of abdominal pain and chronic diarrhea (the hallmark symptoms of Crohn's). Rather, I developed every extra-intestinal symptom there was (arthritis, joint pain, muscle pain, unexplained weight loss, severe fatigue). This prolonged my diagnosis and lead to months of my doctor dismissing me as a hypochondriac while my health spiralled. What I have is inflammation in the small intestine causing malabsorbtion of nutrients, leading to severe nutritional deficiencies which manifested as systemic body wide dysfunction. This was only diagnosed with a colonoscopy/gastroscopy, and it took a lot of self-advocating before finding a competent doctor able to recognize the issue. I suspect that many Accutane-users might have similar problems that go unnoticed by doctors, and STRONGLY recommend that everyone suffering with side-effects get spit-roasted by scopes. There were several times my bloodwork come back "normal" before the issue was finally discovered. It was only after I checked myself into the ER, where an abnormality was discovered in my urine sample, that lead to a referral to a GI specialist who ordered the scopes.

 

Malabsorbtion can cause vitamin D and B12 decencies (amongst many others), which are responsible for a host of nasty symptoms. It can take months of supplementing with vitamin D before your levels are back to healthy standards (and one can be symptomatic even at the lower end of spectrum still deemed healthy). Even once levels have stabilized, it can takes several more months for symptoms to resolve themselves. Treat yourselves as if you are vitamin deficient, supplement with everything you can, eat healthy and eat LOTS, and make you get a tonne of protein. Avoid caffeine and alcohol, as well as gluten and excess sugar. Make exercise a lifestyle (seriously, it seems as though many of the body-builders who've used Accutane at high doses for multiple courses don't seem to suffer the same extent of side effects). If you're having mental health issues (and I suspect everyone in this thread is to some degree), go on an anti-depressant. Low sertonin levels will amplify your issues by tenfold. Willing to bet that a lot of the "brain-fog" people complain of is low serotonin levels and/or nutrient deficiencies.

 

Hehe, by the way, first thing I did upon returning from the hospital was phone a lawyer. After all the misery this drug's inflicted upon me over the last two year, damn right I'm gonna try to sue.

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MemberMember
15
(@accutazed)

Posted : 02/01/2015 10:50 pm

 

 

Malabsorbtion can cause vitamin D and B12 decencies (amongst many others), which are responsible for a host of nasty symptoms. It can take months of supplementing with vitamin D before your levels are back to healthy standards (and one can be symptomatic even at the lower end of spectrum still deemed healthy). Even once levels have stabilized, it can takes several more months for symptoms to resolve themselves. Treat yourselves as if you are vitamin deficient, supplement with everything you can, eat healthy and eat LOTS, and make you get a tonne of protein. Avoid caffeine and alcohol, as well as gluten and excess sugar. Make exercise a lifestyle (seriously, it seems as though many of the body-builders who've used Accutane at high doses for multiple courses don't seem to suffer the same extent of side effects). If you're having mental health issues (and I suspect everyone in this thread is to some degree), go on an anti-depressant. Low sertonin levels will amplify your issues by tenfold. Willing to bet that a lot of the "brain-fog" people complain of is low serotonin levels and/or nutrient deficiencies.

 

Hehe, by the way, first thing I did upon returning from the hospital was phone a lawyer. After all the misery this drug's inflicted upon me over the last two year, damn right I'm gonna try to sue.

Hey man, im sorry you got diagnosed with Chron's and i sincerely wish you the best. I have family members with that and it was very brutal!

I wan't to point out what you said about serotonin levels. I am currently talking to the doc about adhd/anti depressants right now. I am not sure what direction i want to go yet.

No Fap is helping me dramatically right now. My brain fog is significantly less and the no fapping really helps with depression. I encourage people to read the nofap subreddit and try it out. All it takes is 2 weeks to really start noticing the benefits. Along with this I have added in running and my mind is feeling healthy once again. Im sorry to those with the bad joint pain it can be hard to exercise .

My dry hair and psoriasis symptoms are slowly going away.

my doc told me to think about anti depressants/adhd meds for 2 weeks before going forward with a diagnosis. Ill report back in a bit, but please everyone on this thread stop jerking it! =) It helps lots.

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MemberMember
21
(@deebo)

Posted : 02/02/2015 1:24 am

I'd written up a huge post that my phone deleted right before I submitted it. Damn.

Long story short, my Crohn's is quite "atypical". Despite knowing that Accutane has been linked with it, I dismissed it as my problem because of an absence of abdominal pain and chronic diarrhea (the hallmark symptoms of Crohn's). Rather, I developed every extra-intestinal symptom there was (arthritis, joint pain, muscle pain, unexplained weight loss, severe fatigue). This prolonged my diagnosis and lead to months of my doctor dismissing me as a hypochondriac while my health spiralled. What I have is inflammation in the small intestine causing malabsorbtion of nutrients, leading to severe nutritional deficiencies which manifested as systemic body wide dysfunction. This was only diagnosed with a colonoscopy/gastroscopy, and it took a lot of self-advocating before finding a competent doctor able to recognize the issue. I suspect that many Accutane-users might have similar problems that go unnoticed by doctors, and STRONGLY recommend that everyone suffering with side-effects get spit-roasted by scopes. There were several times my bloodwork come back "normal" before the issue was finally discovered. It was only after I checked myself into the ER, where an abnormality was discovered in my urine sample, that lead to a referral to a GI specialist who ordered the scopes.

Malabsorbtion can cause vitamin D and B12 decencies (amongst many others), which are responsible for a host of nasty symptoms. It can take months of supplementing with vitamin D before your levels are back to healthy standards (and one can be symptomatic even at the lower end of spectrum still deemed healthy). Even once levels have stabilized, it can takes several more months for symptoms to resolve themselves. Treat yourselves as if you are vitamin deficient, supplement with everything you can, eat healthy and eat LOTS, and make you get a tonne of protein. Avoid caffeine and alcohol, as well as gluten and excess sugar. Make exercise a lifestyle (seriously, it seems as though many of the body-builders who've used Accutane at high doses for multiple courses don't seem to suffer the same extent of side effects). If you're having mental health issues (and I suspect everyone in this thread is to some degree), go on an anti-depressant. Low sertonin levels will amplify your issues by tenfold. Willing to bet that a lot of the "brain-fog" people complain of is low serotonin levels and/or nutrient deficiencies. Hehe, by the way, first thing I did upon returning from the hospital was phone a lawyer. After all the misery this drug's inflicted upon me over the last two year, damn right I'm gonna try to sue.

What was the abnormality in your urine? This has always been my apprehension with doctors and tests. I've gone on with pain near my gallbladder and liver twice, in which labs, xraya and ultrasound revealed nothing abnormal. I asked why i was having these pains and mentioned bowl problems but dismissed. If the labs look good their job is done. I am seeking out another primary now. Anyways, I feel I need a game plan so my doctors don't write me off or deny testing. I feel it's best to not mention accutane unless I have to because once I mention it, I feel I lose them-eyes wander. Most people here have tried the supplements and say they don't work. I'm kind of tired of just sucking it up and doing nothing. I'd like to see some specialists and still suck it up.

 

2 questions:

I'm going to keep asking until I am banned:) Does anybody take something continuously that works. Even one thing. Supplements-not food and exercise. I know the value.

 

#2 What is a good game plan to address the symptoms via testing from docs? What gives me the best analysis of my health for the bang for buck and where to start? I've had labs but nothing abnormal. I don't go to doctors much.

 

I was reading a journal last week that says accutane upregulates over 400 genes and downregulates around 50. Even if most of them return to whatever normal means, we might be left with a multitude of gene expressions that have been negatively modified. Doesn't it sound most logically to test the genes and try to make a game plan from that? If A gene responsible for say hair growth needs enzymes but is hindered by another gene B,

.

Hopefully you get the idea. I assume everything is linked and affects the next. If anything can be done to rectify these regulated genes such as vitamins, who knows. If the testing can identify these though, at least we could understand the known protocols and attack the problem with something that has known to correct it. Non taners have alerted genes as well- we aren't mutants, so there is still a chance. (I wouldn't mind if i had developed into a ninja turtle though...God damnit!) We can say everything stems from the gut, and that is likely, but if all of us are suffering similar problems lets put the tests together and evaluate the similarities. Who knows where to go from there. Anyways keep the dramatic defeatest comments at bay please. Your speaking to the choir there. I have little faith, but that's what will make it all the sweeter if I can find any relief whatsoever. Hope everyone is staying strong.

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MemberMember
47
(@walden-rev)

Posted : 02/02/2015 11:54 am

I'd written up a huge post that my phone deleted right before I submitted it. Damn.

Long story short, my Crohn's is quite "atypical". Despite knowing that Accutane has been linked with it, I dismissed it as my problem because of an absence of abdominal pain and chronic diarrhea (the hallmark symptoms of Crohn's). Rather, I developed every extra-intestinal symptom there was (arthritis, joint pain, muscle pain, unexplained weight loss, severe fatigue). This prolonged my diagnosis and lead to months of my doctor dismissing me as a hypochondriac while my health spiralled. What I have is inflammation in the small intestine causing malabsorbtion of nutrients, leading to severe nutritional deficiencies which manifested as systemic body wide dysfunction. This was only diagnosed with a colonoscopy/gastroscopy, and it took a lot of self-advocating before finding a competent doctor able to recognize the issue. I suspect that many Accutane-users might have similar problems that go unnoticed by doctors, and STRONGLY recommend that everyone suffering with side-effects get spit-roasted by scopes. There were several times my bloodwork come back "normal" before the issue was finally discovered. It was only after I checked myself into the ER, where an abnormality was discovered in my urine sample, that lead to a referral to a GI specialist who ordered the scopes.

Malabsorbtion can cause vitamin D and B12 decencies (amongst many others), which are responsible for a host of nasty symptoms. It can take months of supplementing with vitamin D before your levels are back to healthy standards (and one can be symptomatic even at the lower end of spectrum still deemed healthy). Even once levels have stabilized, it can takes several more months for symptoms to resolve themselves. Treat yourselves as if you are vitamin deficient, supplement with everything you can, eat healthy and eat LOTS, and make you get a tonne of protein. Avoid caffeine and alcohol, as well as gluten and excess sugar. Make exercise a lifestyle (seriously, it seems as though many of the body-builders who've used Accutane at high doses for multiple courses don't seem to suffer the same extent of side effects). If you're having mental health issues (and I suspect everyone in this thread is to some degree), go on an anti-depressant. Low sertonin levels will amplify your issues by tenfold. Willing to bet that a lot of the "brain-fog" people complain of is low serotonin levels and/or nutrient deficiencies. Hehe, by the way, first thing I did upon returning from the hospital was phone a lawyer. After all the misery this drug's inflicted upon me over the last two year, damn right I'm gonna try to sue.

How do your doctors treat Crohns ?

Please keep us updated with your treatment as it may benefit us too.

I'm buying raw colostrum at a farm and using some glutamine.

Also eating oatmeal with water because I need energy and it doesnt seem to inflame my intestines.

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MemberMember
76
(@yetanotheraccutanevictim)

Posted : 02/02/2015 1:00 pm

I'd written up a huge post that my phone deleted right before I submitted it. Damn.

 

Long story short, my Crohn's is quite "atypical". Despite knowing that Accutane has been linked with it, I dismissed it as my problem because of an absence of abdominal pain and chronic diarrhea (the hallmark symptoms of Crohn's). Rather, I developed every extra-intestinal symptom there was (arthritis, joint pain, muscle pain, unexplained weight loss, severe fatigue). This prolonged my diagnosis and lead to months of my doctor dismissing me as a hypochondriac while my health spiralled. What I have is inflammation in the small intestine causing malabsorbtion of nutrients, leading to severe nutritional deficiencies which manifested as systemic body wide dysfunction. This was only diagnosed with a colonoscopy/gastroscopy

Thanks so much for all the info. I am sure I have something going on similarly as well. Not having the hallmark symptoms of Crohn's but am having all those extra-intestinal symptoms you speak of. But, the problem is that I've been treating myself as if I do have autoimmune disease of the intestines. I don't know what else I could possibly do to try to cure it (if that was the issue). I just began a water fast today. Am going to attempt to go a few days without eating a single morsel of food.

Let us know what you are doing differently now that you know you have Crohn's. Thanks

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MemberMember
20
(@cbar1516)

Posted : 02/02/2015 1:10 pm

Accutazed, if you're going to be pursuing pharmaceutical psychiatric treatment there's a lot of options. Everyone has different brain chemistry, so no one drug "best" for everyone. I can only speak from personal experience. Firstly, I would strongly recommend avoiding ADHD medication (Ritalin, Adderal, etc). While these drugs are very effective in boosting energy and mood, that's only because they're essentially pharamaceutical-grade amphetamines. The likelihood that you'll end up with an addiction is not insignificant, and prolonged use of these drugs invariably cause negative changes to one's brain over time. Check out Erowid.com and read people's experiences with long-term use of ADHD drugs. Not many stories with happy endings.

 

Anti-depressants contain a fairly wide range of options. I've tried several different types of psyche meds since taking Accutane two years ago (I had immediate mental health side effects, and had to cut my course short because it triggered SEVERE physiological anxiety), and have had more success with some than others. My personal preference are SSRIs, and I've had great success with Fluoxetine (generic Prozac). It takes several weeks to work, but I like it because I don't feel medicated on it. Rather, after a couple months, I just feel like my optimal self again. More outgoing, less anxious, not depressed or "slowed down". It reinstills in me the ability to be optimistic and feel strong. There's no buzz or feeling of being wired. Prozac is not without side effects, and I can attest that it does have an effect on my libido (especially at higher dosages). I'm not as quick to achieve orgasm, and I'm not jerking off three or four times a day. That said, the sexual dysfunction is far from being severe, and if I simply masturbate less frequently (not consistently every morning and evening) it doesn't impact my sex life too greatly.

 

I tried Wellbutrin once because it's boasted as having fewer sexual side effects, but did not like it at all. It made me feel wired, tense, slightly dissociated, and I couldn't stop clenching my jaw. It did little to make me feel like "myself". SSNRIs, which affect both serotonin and norepinephrine, are becoming increasingly popular. Examples include Cymbaltaa, Effexor, and Pristiq. These are very effective drugs at treating depression and anxiety, but I find them to be pretty overkill in my particular case. There's a more "speedy" feel to them, the sexual side effects are noticeably more pronounced, and the withdrawal is surprisingly fucking awful. Like, almost comparable to benzo withdrawl. Doctors all seem pretty eager to hand out samples of these newer drugs, but I would recommend trying some of the older, milder antidepressants first. Again, it's worth stressing that everyone is different, and that what's benefitted me might not be as effective for someone else.

 

Deebo, in regards to supplements, I truly believe our best options are Vitamin D, calcium, magnesium, iron, and a multi-B. Can't stress the vitamin D enough. It's widely agreed upon that the recommended amount by the FDA is ridiculously inadequate for people with deficiencies. Try supplementing with 10 000 ICUs of D3 daily for 4 months, then cut back to 5000. Adding magnesium and calcium supplements is said to complementary.

 

In regards to my Crohn's treatment, I've been started on Entocort, a corticosteroid that primarily affects the digestive track. Once the inflammation in my lower intestine has lessened, I will be tapered off the steroid and put on some kind of immunosuppressant to hopefully maintain remission. Active Crohn's requires quite serious treatment with heavy duty drugs, so don't fuck around with steroids or immunosuppressants without a doctors supervision. I'm pretty certain at this point that the majority of my issues stem from vitamin deficiencies (in particular vitamin D). For those of you supplementing with vitamin D, be persistent!! It can take months to recover from a deficiency, and if you stop after you've achieved a degree of improvement, your levels may drop again as soon as winter rolls around.

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MemberMember
143
(@indigorush)

Posted : 02/02/2015 4:45 pm

 

 

 

Malabsorbtion can cause vitamin D and B12 decencies (amongst many others), which are responsible for a host of nasty symptoms. It can take months of supplementing with vitamin D before your levels are back to healthy standards (and one can be symptomatic even at the lower end of spectrum still deemed healthy). Even once levels have stabilized, it can takes several more months for symptoms to resolve themselves. Treat yourselves as if you are vitamin deficient, supplement with everything you can, eat healthy and eat LOTS, and make you get a tonne of protein. Avoid caffeine and alcohol, as well as gluten and excess sugar. Make exercise a lifestyle (seriously, it seems as though many of the body-builders who've used Accutane at high doses for multiple courses don't seem to suffer the same extent of side effects). If you're having mental health issues (and I suspect everyone in this thread is to some degree), go on an anti-depressant. Low sertonin levels will amplify your issues by tenfold. Willing to bet that a lot of the "brain-fog" people complain of is low serotonin levels and/or nutrient deficiencies.

 

Hehe, by the way, first thing I did upon returning from the hospital was phone a lawyer. After all the misery this drug's inflicted upon me over the last two year, damn right I'm gonna try to sue.

Hey man, im sorry you got diagnosed with Chron's and i sincerely wish you the best. I have family members with that and it was very brutal!

I wan't to point out what you said about serotonin levels. I am currently talking to the doc about adhd/anti depressants right now. I am not sure what direction i want to go yet.

No Fap is helping me dramatically right now. My brain fog is significantly less and the no fapping really helps with depression. I encourage people to read the nofap subreddit and try it out. All it takes is 2 weeks to really start noticing the benefits. Along with this I have added in running and my mind is feeling healthy once again. Im sorry to those with the bad joint pain it can be hard to exercise .

My dry hair and psoriasis symptoms are slowly going away.

my doc told me to think about anti depressants/adhd meds for 2 weeks before going forward with a diagnosis. Ill report back in a bit, but please everyone on this thread stop jerking it! =) It helps lots.

It definitely helps.

The amount of people that say their social anxiety/depression went away/reduced after no fap... it's too much to ignore.

I've had a couple of resets along the way.

Got to day 63 at one point.

I'm on day 14 now.

I have a girlfriend, so I'm not doing 'hard mode', but it helps a lot of things - mainly sex.

I'm also going to bed earlier and having a protein shake (pea protein) with some fruit (like pineapple and mango) and chia seeds for breakfast (blended).

As I feel pretty unwell in mornings, this is helping.

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MemberMember
76
(@yetanotheraccutanevictim)

Posted : 02/02/2015 5:11 pm

In regards to my Crohn's treatment, I've been started on Entocort. ...

Have you tried the autoimmune diet yet?

It's scary messing with drugs.

EDIT:

Just began a water fast today with another forum user. Will keep everyone updated on how it goes and if I notice any changes from it.

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MemberMember
21
(@pathtorecovery91)

Posted : 02/02/2015 5:18 pm

I'm gonna try no fap as well. Do yall suffering with ed also notice a change in your penis head. Mines has wrinkles in it and it kind of burns a bit.

Also with the sort of erection I get which is only from constant stimulation, the head doesn't get full and hard. The rest is somewhat hard put can't stay up.

Anyone similar? Also to thoses of you who do no fap for a while, does it improve your erection??? The longest I tried it was for like 5 days. I get an urge but still can't perform.

Did anyone try progesterone cream to see if it helps??

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MemberMember
223
(@gladiatoro)

Posted : 02/02/2015 6:21 pm

We really don't need more DRUGS for our side effects think about it that's what CAUSED these problems , synthetic drugs are NEVER the answer for those moody I would recommend exercise I went skiing today some cardio is great for the brain fog , get sun light Vit D is essential to the body , lithium orotate would also be good as a bonus it's great for sleeping , yeah we got poisoned so it's all about symptom management YES there is permanent damage as we all have found out but there are natural treatments that help. Btw keep alcohol intake low , Accutane and isotretinoin don't mix too well , pot would be a better option .

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MemberMember
5
(@asdfghjkl123456789)

Posted : 02/02/2015 11:08 pm

Don't do it Acne44. The benefits don't outweigh the detriments. I could care less if I had acne or even scars for that matter after accutane. You should consider yourself lucky and learn from this thread. I only wish I saw it 7 months ago

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MemberMember
17
(@artaemis)

Posted : 02/03/2015 12:01 am

I'm considering going on Accutane. I have no heath problems besides acne, but I'm sick of looking at it. It causes emotional problems. My dermatoligist said it's the last hope for me to get rid of acne since everything else has failed and I have been struggling with this for too many years. I will also need laser scar removal and plastic surgery due to the damage that cystic acne has caused me.

If you go on this drug and your internal organs and detox pathways begin to malfunction, then you'll only have yourself to blame. The information in this thread should be enough to persuade anyone to run and never look back. Most of the people here did not have this opportunity to know the truth and you're considering just throwing it away? You need healing, not further damage.

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MemberMember
15
(@accutazed)

Posted : 02/03/2015 12:17 am

On 2/3/2015 at 3:45 AM, IndigoRush said:
On 2/2/2015 at 9:50 AM, Accutazed said:

Hey man, im sorry you got diagnosed with Chron's and i sincerely wish you the best. I have family members with that and it was very brutal!

I wan't to point out what you said about serotonin levels. I am currently talking to the doc about adhd/anti depressants right now. I am not sure what direction i want to go yet.

No Fap is helping me dramatically right now. My brain fog is significantly less and the no fapping really helps with depression. I encourage people to read the nofap subreddit and try it out. All it takes is 2 weeks to really start noticing the benefits. Along with this I have added in running and my mind is feeling healthy once again. Im sorry to those with the bad joint pain it can be hard to exercise .

My dry hair and psoriasis symptoms are slowly going away.

my doc told me to think about anti depressants/adhd meds for 2 weeks before going forward with a diagnosis. Ill report back in a bit, but please everyone on this thread stop jerking it! =) It helps lots.

It definitely helps.

The amount of people that say their social anxiety/depression went away/reduced after no fap... it's too much to ignore.

I've had a couple of resets along the way.

Got to day 63 at one point.

I'm on day 14 now.

I have a girlfriend, so I'm not doing 'hard mode', but it helps a lot of things - mainly sex.

I'm also going to bed earlier and having a protein shake (pea protein) with some fruit (like pineapple and mango) and chia seeds for breakfast (blended).

As I feel pretty unwell in mornings, this is helping.

Yeah man, i have only made to a month but before sexual activity i always have to warn my partner im going to splooge within 30 seconds whenever i get passed a week or 2. But then 45 seconds later G2G again haha. I love No Fap.

everyone start reading [removed] .

I think happy mind = happy body is slightly undervalued in this thread. We all hate the brainfog but I rarely hear people going into the doctor to talk about anti depressants/adhd meds etc. One thing that is great about issues with the mind is the doc won't get all know-it-all like when you tell doc you got depression. It is much more easy to get a diagnosis then looking at 2 shady blood tests.

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MemberMember
223
(@gladiatoro)

Posted : 02/03/2015 11:56 am

Acne 44 , go to LXR Organics if you want to treat your pimples safely , chemotherapy is NOT the answer there is no need to poison your body over pimples also check out alternativista on this site she went on three rounds of Accutane and it did NOTHING for her until she found out she was allergic to citrus fruit then her severe cystic acne cleared up .

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