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Repairing the long-term damage from Accutane

 
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(@pido)

Posted : 03/17/2016 12:48 pm

I'm planning on getting some tests done again so what are the hottest trends right now? SIBO and copper? What kind of copper test since there are different kinds of?

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1803
(@guitarman01)

Posted : 03/17/2016 1:59 pm

1 hour ago, Pido said:

I'm planning on getting some tests done again so what are the hottest trends right now? SIBO and copper? What kind of copper test since there are different kinds of?

copper serum. i did read a study where ceruloplasmin may not be accurate. yes sibo hydrogen breath test could be helpful, not sure if everyplace does this. just thinking of some test i havent had done, because ive had alot myself. b vitamin blood test maybe b6, b2, biotin? alot of us have had normal blood test on b12 and folate. i am normal on vitamin e, d, calcium, magnesium. selenium and zinc test maybe? just looking at things that could cause hair loss as well. idk at some point we might as well just test for all vitamin and mineral deficiencies and be done with it. So we can move on from this.

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223
(@gladiatoro)

Posted : 03/17/2016 7:12 pm

Drink lots of H2O , not tea , coffee , pop , beer etc H2O and if you drink beer then water later we are dealing with CHRONIC cellular dehydration like I said before it's a drug induced syndrome short of getting a new liver I'm pretty sure we're stuck with it that is the harsh reality also watch your diet vit a and retinol are not that healthy for us our system has been @$$"ed over royally .

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MemberMember
9
(@user511605)

Posted : 03/17/2016 9:43 pm

Retinol, the vitamin A that comes from animal products, comes in storage form and once consumed will go to the liver until it is ready for conversion to retinoic acid. Retinoic acid is the hormonally active form of vitamin A which is used in chemotherapy (and acne) because of its ability to activate retinoic acid receptors. This route of vitamin A is probably best avoided whenever possible.

Eating plant products means ingesting beta carotene, the potentialprecursor to retinol. This significant difference is important to recognizebecause with beta carotene the body has a choice of whether to supplement the pathway of retinoic acid (like accutane), or instead do the opposite andblockthe activation of retinoic acid receptors.

http://www.ncbi.nlm.nih.gov/pubmed/22418437

According to another study, blocking retinoic acid receptor activation results in promoting the differentiation of hematopoietic stem cells. This means more new blood cells.

http://www.ncbi.nlm.nih.gov/pubmed/10627451

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(@user511605)

Posted : 03/17/2016 10:38 pm

If you think about it, for whatever period of time we were each on accutane, we were completely bypassing the bodys natural mechanism to block retinoic acid overdose. In trying to make up forthisI startedeating A LOTof raw spinach and other leafy greens, also no grains and gluten because they are hard to digest, and meat/beansfor proteinonly when needed. This dietso far has improved mybowel movements/constipation.My energy has alsoimproved.

The other good thing about eating a lot of raw leafy greens is their high folate content. According to the study below we lost a "statistically significant" amountof folic acid fromaccutane treatment. The folate should be good for DNAmethylation/rate of metabolism.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4248518/

One more about beta carotene. When supplemented alongside accutane, "patients treated with dietary supplement had lower side effects, with a less degree of erythema and dryness, and greater degree of hydration."

http://www.ncbi.nlm.nih.gov/pubmed/25068233

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MemberMember
157
(@tanedout)

Posted : 03/18/2016 8:51 am

10 hours ago, Accustained said:

The other good thing about eating a lot of raw leafy greens is their high folate content. According to the study below we lost a "statistically significant" amountof folic acid fromaccutane treatment. The folate should be good for DNAmethylation/rate of metabolism.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4248518/

In my opinion the lack of folic acid is again down to gut flora. I've got no/no detectable beneficial e-coli at all (confirmed by testing) and one of thing things this does is 'ferments to produce folic acid', so I'm almost certainly low in active folic acid, and of course there will be a knock on effect for all the bodily processes that need this.

That's why at the moment I think the best course of action for people is get tested for gut flora/parasites/candida and potentially SIBO and follow the recommended (i.e. best medical practice procedure, not recommendations off a forum) method(s) to treat.

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MemberMember
47
(@walden-rev)

Posted : 03/18/2016 9:14 am

There was recently a guy who tested his intestines.
No cholesterol, I cant find the post so if someone can help me with that?

The reason why I'm asking is I'm still baffled by the fact when I use Beta-Cyclodextrin my nails grow like Pre-accutane (and I figure my hair will too).
Just the night after taking it i have a very noticable nail growth. My growth rate goes from 25% to 90%
One thing the Cyclodextrin does is it transports lipophilic minerals/vitamins. Anything lipophilic in the liver will be transported into the bloodstream.
This includes Cholesterol which I think is responsible for my nail growth. Now my theory(yes another theory) is that Accutane screwed over our Cholesterol metabolism or the ratios between HDL, LDL and VLDL.
Source 1
Source 2
Source 3

Cholesterol

  • Hormone production.Cholesterol plays a part in producing hormones such as estrogen, testosterone, progesterone, aldosterone and cortisone.
  • Vitamin D production.Vitamin D is produced when the suns ultraviolet rays reach the human skin surface.
  • Bile production.Cholesterol produces bile acids which aid in digestion and vitamin absorption.
  • Cell membrane support.Cholesterol plays a very important part in both the creation and maintenance of human cell membrane.

 

"Cholesterol is an important structural component of cellular membranes and myelin and a precursor of oxysterols, steroid hormones, and bile acids. Cholesterol is a major constituent of the human brain (with about 35 grams of cholesterol in an adult brain [1]), and the brain is the most cholesterol-rich organ [2], containing about 20% of the bodys total cholesterol."

"Cholesterol depletion leads to synaptic and dendritic spine degeneration, failed neurotransmission, and decreased synaptic plasticity [7]. Cholesterol is a pivotal constituent of cell membranes, steroid hormones, and for the function of the hedgehog protein"

"Defects in cholesterol metabolism lead to structural and functional central nervous system (CNS) diseases such as Smith-Lemli-Opitz syndrome [9], Niemann-Pick type C (NPC) disease [10], Huntingtons disease [11], and Alzheimers disease [12]. These metabolic defects affect different metabolic pathways such as (1) cholesterol biosynthesis, (2) lipid transport and lipoprotein assembly, (3) receptors that mediate the cellular uptake of lipids, and (4) signaling molecules [13]."
[Edited link out]

[Edited link out]

So i'm not saying this is a cure or anything else, but I think we created a negative ratio between HDL, LDL and VLDL and it causes some of our problems.
I still continue my current stack but im going to look further into Cholesterol

-Wald

 

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MemberMember
9
(@user511605)

Posted : 03/18/2016 10:14 am

Taned out - folic acidisn't "produced" from intestinalbacteria.nutrient absorption might beslightlyaffected by gut flora, but I don't see that being anywhere near amain cause of Accutane side effects.

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MemberMember
1803
(@guitarman01)

Posted : 03/18/2016 1:29 pm

On 3/18/2016 at 10:14 PM, Walden Rev said:

There was recently a guy who tested his intestines.
No cholesterol, I cant find the post so if someone can help me with that?

The reason why I'm asking is I'm still baffled by the fact when I use Beta-Cyclodextrin my nails grow like Pre-accutane (and I figure my hair will too).
Just the night after taking it i have a very noticable nail growth. My growth rate goes from 25% to 90%
One thing the Cyclodextrin does is it transports lipophilic minerals/vitamins. Anything lipophilic in the liver will be transported into the bloodstream.
This includes Cholesterol which I think is responsible for my nail growth. Now my theory(yes another theory) is that Accutane screwed over our Cholesterol metabolism or the ratios between HDL, LDL and VLDL.
Source 1
Source 2
Source 3

Cholesterol

  • Hormone production.Cholesterol plays a part in producing hormones such as estrogen, testosterone, progesterone, aldosterone and cortisone.
  • Vitamin D production.Vitamin D is produced when the suns ultraviolet rays reach the human skin surface.
  • Bile production.Cholesterol produces bile acids which aid in digestion and vitamin absorption.
  • Cell membrane support.Cholesterol plays a very important part in both the creation and maintenance of human cell membrane.

 

"Cholesterol is an important structural component of cellular membranes and myelin and a precursor of oxysterols, steroid hormones, and bile acids. Cholesterol is a major constituent of the human brain (with about 35 grams of cholesterol in an adult brain [1]), and the brain is the most cholesterol-rich organ [2], containing about 20% of the bodys total cholesterol."

"Cholesterol depletion leads to synaptic and dendritic spine degeneration, failed neurotransmission, and decreased synaptic plasticity [7]. Cholesterol is a pivotal constituent of cell membranes, steroid hormones, and for the function of the hedgehog protein"

"Defects in cholesterol metabolism lead to structural and functional central nervous system (CNS) diseases such as Smith-Lemli-Opitz syndrome [9], Niemann-Pick type C (NPC) disease [10], Huntingtons disease [11], and Alzheimers disease [12]. These metabolic defects affect different metabolic pathways such as (1) cholesterol biosynthesis, (2) lipid transport and lipoprotein assembly, (3) receptors that mediate the cellular uptake of lipids, and (4) signaling molecules [13]."
[Edited link out]

[Edited link out]

So i'm not saying this is a cure or anything else, but I think we created a negative ratio between HDL, LDL and VLDL and it causes some of our problems.
I still continue my current stack but im going to look further into Cholesterol

-Wald

 

this could be related to gut bacteria as well based on new studies

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MemberMember
157
(@tanedout)

Posted : 03/18/2016 1:52 pm

4 hours ago, Walden Rev said:

There was recently a guy who tested his intestines.
No cholesterol, I cant find the post so if someone can help me with that?
 

Well it wasn't me that posted it, but as it happens my results also show no trace of cholesterol (which I did think was odd, but focused more on the lack of beneficial bacteria). Also note the none-detectable levels of Triglycerides;

hwRXzzH.jpg

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MemberMember
157
(@tanedout)

Posted : 03/18/2016 2:42 pm

4 hours ago, Accustained said:

Taned out - folic acidisn't "produced" from intestinalbacteria.nutrient absorption might beslightlyaffected by gut flora, but I don't see that being anywhere near amain cause of Accutane side effects.

Yeah that could probably be worded better, but apparently gut bacteria do actually make their own folic acid (sources at the bottom of the link below)

Bacteria make their own folic acid by taking PABA, short for p-aminobenzoic acid, and adding a substance called pteridine to form dihydropteroic acid. Then they add glutamic acid to make dihydrofolic acid and use an enzyme called dihydrofolate reductase to make tetrahydrofolic acid, as explained by B. E. Nardell, Ph.D. of the Department of Pharmacology at Ross University School of Medicine in Antimicrobial Chemotherapy. Enzymes are a type of protein that the cells must use to make a reaction go fast enough. Tetrahydrofolic acid is the form of folic acid that the bacterial cells need.

http://www.livestrong.com/article/482184-folic-acid-bacteria/

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15
(@justmom)

Posted : 03/18/2016 3:04 pm

Do you guys who have no or low cholesterol also have ED? At this point, my son's only post-accutane symptom is ED. His blood tests came back all normal except for HIGH cholesterol, which did seem unusual for a 19 year old.

Now I feel stupid. Are you even talking about blood tests? Are you talking about some kind of test for bacteria or SIBO? If one is high, would the other be also? taned out, what test did you ask for that you got the above results?

You know what would help is an active word doc somewhere that someone could monitor and add to. That said something like, "If you have this symptom, have this test done, and send your results to ______," who could then perhaps compile them and make some sense out of it. Maybe a survey also of symptoms/tests done/results/things tried and whether they helped or not. There are 299 followers on this thread; they must know something. : )

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1
(@accutanesuckss)

Posted : 03/18/2016 7:40 pm

@justmom Im also 19 years old like your son. And one of the side effect from accutane im also having is ED. I only took the drug for 2 weeks on 10 mg. But my cholesterol was fine on the blood tests. The only thing that was high was my bile acids. I find it weird your son i saying he doesn't care about the ED. Because the ED actually really makes me depressed as a 19 year old.

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223
(@gladiatoro)

Posted : 03/18/2016 8:03 pm

ED at 19 that's just severely $&@"Ed up , and completely wrong but it's what happens when you put your trust in Allopathic medicine . It's a good way for them to sell more drugs for your NEW ailments. In reality allopathic medicine is completely BANKRUPT and it needs to go away before more young lives are destroyed.

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1803
(@guitarman01)

Posted : 03/18/2016 9:00 pm

idk i keep coming back to copper for some reason. i think im addicted. its weird. i feel greater strength in my shoulders, it puts some moisture in my eyes. i think its making my skin less pale, more tan. heres a couple web pages. one is the anti bacterial, virus and yeast/candida properties of copper the other is some random forum i came across about people talking about vitamin a copper relations, not accutane related. idk if my constant ear fullness is from allergies. could be bacterial,fungus or virus related. if this is the case I read this can even effect areas around the brain.
https://en.wikipedia.org/wiki/Antimicrobial_properties_of_copper#Adenovirus

http://forums.phoenixrising.me/index.php?threads/vitamin-a-and-its-interactions-split-from-vitamin-d-sensitivity-thread.37970/

Possible Complications

A chronic ear infection may cause permanent changes to the ear and nearby bones, including:

  • Infection of the mastoid bone behind the ear (mastoiditis)
  • Ongoing drainage from a hole in the eardrum that does not heal, or after the ear tubes are inserted
  • Cyst in the middle ear (cholesteatoma)
  • Hardening of the tissue in the middle ear (tympanosclerosis)
  • Damage to, or wearing away of the bones of the middle ear, which help with hearing
  • Paralysis of the face
  • Inflammation around the brain (epidural abscess) or in the brain
  • Damage to the part of the ear that helps with balance

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MemberMember
1803
(@guitarman01)

Posted : 03/18/2016 9:37 pm

shit i didnt even realize i have as many as 20 pills of amox-clav 875mg antibiotics, thats been laying around for awhile. Im going to start taking this along with copper only and see if it helps my ear fullness and yellow/white tongue. I think this would def tell me something if it does. Il let you guys know.

actually maybe il hold off on the antibiotic for a bit and just stick with copper at 8mgs split throughout the day. not sure yet.

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MemberMember
20
(@heinstar)

Posted : 03/18/2016 9:47 pm

Apparantly Roche is developing a drug called Basimglurant (RG7090)to treat major depressive disorder. It's an ironyhow their best selling drug is famous for causing severe depression even after cessationwhich they still deny it causes and is now developing a drug to treat majordepression, hmm.

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223
(@gladiatoro)

Posted : 03/18/2016 10:23 pm

Roche is probably the most EVIL pharmaceutical company in the world for GOD sakes they make synthetic vit mains , they have a lot of blood on there hands . $luts all of them and that's NOT an understatement.

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(@gladiatoro)
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(@justmom)

Posted : 03/18/2016 11:59 pm

@accutanesuckss Didn't mean to mislead you if I said something that made you think my son doesn't mind the ED. He minds it very much. Not just the lack of sexual function, but the libido as well. I'm with Gladiatoro that it's criminal for a drug company to steal something so important to young people. Accutanesuckss, have you tried anything with any success at all? My son has tried a few things with very minor success, and is now two weeks into RSO.

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1803
(@guitarman01)

Posted : 03/19/2016 12:40 pm

just a update. took 1 antibiotic pill last night and that made me feel like shit and was tired this morning, messed up my digestion. might look into taking 2 culturelles per day for a total of 30 bil lacto gg. i do think my digestion is messed up in some way thats why i always have this tongue coating.
Still taking copper in divided doses 8mg per day. i just feel different in my shoulders, like in a good way.so im not sure what exactly this is doing here, if its strengthing bones or muscles. Im trying to think of all the other supplements ive taken in the past and i dont think anything else has had this kind of effect. btw for all my followers lol, manganese def is of no benefit (idk how some of you stayed on this for so long) also not sure about selenium either, that might have made my digestion worse. a good indication seems to be looking at my tongue for overall gut health.

Role of copper in human neurological disorders

http://ajcn.nutrition.org/content/88/3/855S.full This is your brain on copper.

Copper is a trace element present in all tissues and is required for cellular respiration, peptide amidation, neurotransmitter biosynthesis, pigment formation, and connective tissue strength.

Copper is one of many metal ions that are required for essential body functions but are toxic in excess (1,2). Copper is present throughout the brain and is most prominent in the basal ganglia, hippocampus, cerebellum, numerous synaptic membranes, and in the cell bodies of cortical pyramidal and cerebellar granular neurons (2). Enzymes in the central nervous system that depend on copper for their function include tyrosinase, peptidylglycine -amidating mono-oxygenase, copper/zinc superoxide dismutase, ceruloplasmin, hephaestin, dopamine--hydoxylase, and cytochromecoxidase (3-5).

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MemberMember
1
(@accutanesuckss)

Posted : 03/19/2016 3:19 pm

@justmom no i tried a lot of things to cure myED. I even tried a 14 day water fast. Or going to the gym everyday to boost my testosterone. It is almost 10 months since i took my last pill still no huge improvements. From what i've been reading from the finasteride guys the main problem is in our gut and also also the liver. This weekend i started with only eating vegetables and unprocessed fish, chicken and other meat trying to heal my gut. Im still trying to find a healthy food source to get enough carbs in. Im also supplementing with vsl3 for my gut. For my liver/methylation i use TUDCA, Choline Bitartrate, TMG, Biotin, Panthotenic Acid, Solgar Folate(as metafolin) and also vitamin D because my blood tests showed i had a vitamin D deficiency. I also tested my stool and it showed up two parasites which i believe you also need to get rid of if you want a full recovery. Im also going to do a SIBO test soon.

Also for the guys who just took accutane and got ED or other side effects from accutane you can fix your problems. Please do not give up. When i first found this forum and when i just was trying to figure out what was going on with me. And saw posts from people who posted articles about how this is permanent i actually got really depressed and wanted to kill myself.

[Edited link out] I know this is for post finasteride syndrome but i believe post finasteride, accutane and saw palmetto syndrome all have the same cause.

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(@octopusfrog)

Posted : 03/19/2016 6:48 pm

Hatetane is trying to help us all out here. Please send him your details on how accutane has affected you...

On 3/14/2016 at 6:22 AM, hatetane said:

Have any of you men experience estrogen dominance? Amongst other things it shuts down growth plates.

Some signs would be fat around the waist area and sings of gynecomastia, male beasts, pain in breast area or just fleshy in breast area.
No improvement in muscle growth with exercise.

Men should have high T low E. High E will lower T and this can have adverse sexual effects.

I know accutane side effects are wide and varied but we really need to try and build a concise profile that could be a starting point
when first setting out on testing for all new accutane sufferers.

Vit D deficiency for instance seems to be reported by everyone.
Getting all the sex hormones tested - I know this rarely shows up anything but by gathering all info when there are notable results
will give us a pattern that can lead to investigation.

I have two doctors that are interested in looking at ED and myopathy (muscle wastage). I have actually had little response so it is hard to be taken seriously when I only have a few case histories. So please do PM your case - it may get some research going.

Veterans - maybe you could ask for case histories in other areas, each of you concentrate on one or two things like depression or collect
info on joint pain etc.

I just wish we could get organised on all this. I really believe we need experts on this and until such times when we can produce
consistent information we will never make any headway.

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MemberMember
14
(@octopusfrog)

Posted : 03/19/2016 7:14 pm

Also has anyone attempted to reach out to Dr. Bremner ? http://www.psychiatry.emory.edu/research/laboratories/bremner/index.html

I see that his video regarding accutane was posted several pages back. Surely he would be the kind of person we could recruit to assist us here ?

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MemberMember
4
(@blackfox01)

Posted : 03/19/2016 9:13 pm

On 7/15/2014 at 2:20 AM, Dimmer said:

hello guys,

 

i would like to share my success story with you.I was suffering from chronic low libido which i am sure was caused by accutane.I experienced complete absence of sexual sensation on my genitals and as a result erectile dysfunction and difficulty having an orgasm.After i stopped taking accutane my symptoms strangely got worse as the time passed instead of improving.I tried various things to reverse my libido loss such as healthy diet,some drugs that were supposed to help improve libido, but nothing worked.I then found a report in the internet about dr. Pezzi who has written the book ''the science of sex'' and claimed that he reversed his libido loss caused by accutane by taking the drug finasteride.I was determined to find a solution to my problem so i decided to try it.I began taking 1mg/day and then slowly increased to 5mg/day.I took it for a total of 5 months.During that time i started experiencing a return of my acne which was accompanied by a small increase in libido and a slight return of sexual sensation.I continued taking it as long as i noticed some positive effects.The big surprise happened when i decided to stop taking the drug.I experienced a huge increase in libido,sexual sensation and acne.My spontaneous and morning erections which were gone since i had taken accutane came back and i no longer had problems reaching an orgasm.I don't know what exactly this drug did to my system but it worked.6 months have passed since i stopped taking finasteride and i still experience all the positive effects,so i believe the effects are permanent.I now feel like a normal man of my age(i am 28 years old).The only side effect i had was the return of acne but i believe that has to do with the return of my libido but i prefer having acne and a healthy libido than having no acne and no libido.

Was this story BS?? DId anyone else try this??

It sounds very similar to a recovery on the PSSD forums (ssri issues) A guy took SJW and felt a little bit better then he quit cold turkey and recovered.

Was this story BS?? DId anyone else try this??

It sounds very similar to a recovery on the PSSD forums (ssri issues) A guy took SJW and felt a little bit better then he quit cold turkey and recovered.

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