IndigoRush

Repairing the long-term damage from Accutane

11,026 posts in this topic

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-Going to call them later today

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Also:

https://www.google.com/search?q=13+cis+retinoic+acid&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a&channel=sb#rls=org.mozilla:en-US:official&channel=sb&q=13+cis+retinoic+acid+epigenetics

Look at all those studies geeez.

Edited by Duul

My Accutane Story:

Accutane is Chemotherapy marketed as an Acne drug.

Used to treat cancers in all parts of the body including the brain.

That is Criminal.


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Manganese (with the other recommended vitamins) has increased my hair shedding, skin shedding, increased head pressure, and made me have a bloody nose. Lovely. I may need to take a break from this regimen.

what exactly are you taking? how much, and when?

sounds like youre moving something around.


If you have a majority of the following: Joint pain,Brain fog,lethargy,high bilirubin,dry skin, night-blindness, sweat easily, thin easily damaged skin, poor wound healing, dry brittle hair..... Please get a RBC copper, ceruloplasmin, plasma copper,  RBC zinc and a Vitamin D test ASAP


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Manganese (with the other recommended vitamins) has increased my hair shedding, skin shedding, increased head pressure, and made me have a bloody nose. Lovely. I may need to take a break from this regimen.

what exactly are you taking? how much, and when?

sounds like youre moving something around.

I'm also very interested in this. Does seem like something is being stirred up in you. I hope you are definitely sure the symptoms are newly caused from the recent introduction of manganese (along with the other vitamins). I've been taking about 15mg manganese/day and B vitamins with loads of egg yolks lately and don't really notice a difference. Maybe go a couple weeks without taking the supps and then reintroduce them heavily and see what happens.

- Everyone go pick up Terry Wahl's book (just came out with updated paperback yesterday). It's the most nutrient dense diet you could possibly eat. Would definitely help us if we could follow that eating strategy.

-----------------

Just wanted to ask again:

**Who here has MAJOR debilitating symptoms from the accutane that DID NOT take antibiotics around the time of it?

I'm just wondering if a lot of my symptoms might not be from the accutane but instead from the antibiotics causing some sort of chronic infection.

Perhaps the accutane ruined our gut healing potential which ruined our immune system opening the gates to chronic infections..

There are a lot of things I haven't tested accurately for yet like mycoplasmas, lyme (and co-infections such as bartonella, babesia, ehrlichia, etc), HHV-6, epstein-barr, and so on... These things can cause things similar to the accutane.

I know during the treatment my appetite completely went away. It was horrible. Seems like that would be more caused by the antibiotics and not the accutane. Unless someone else here experienced the same thing who did not take antibiotics. I took Bactrim btw.

Sidenote: I wonder why my platelet count continuously got lowered throughout my accutane treatment and now stays low. You can check it out in my signature.


Resources for people looking to heal: http://bit.ly/fixingaccutanedamage
Some of the tests I've had over the years of being ill: http://bit.ly/testingresults
My symptoms I've suffered from (includes accutane dosage): http://goo.gl/ZmNCHN
Email I can be contacted at: optimumpremonition2 at gmail dot com


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Manganese (with the other recommended vitamins) has increased my hair shedding, skin shedding, increased head pressure, and made me have a bloody nose. Lovely. I may need to take a break from this regimen.

what exactly are you taking? how much, and when?

sounds like youre moving something around.

Moving stuff around is never a good thing, zinc moves stuff around, eating vitamin A moves stuff around they are both detrimental in my experience. The problem is how is it going to move out when the bile acid transporters have been down regulated due to the toxic effect of the drug?

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Manganese (with the other recommended vitamins) has increased my hair shedding, skin shedding, increased head pressure, and made me have a bloody nose. Lovely. I may need to take a break from this regimen.

what exactly are you taking? how much, and when?

sounds like youre moving something around.

Moving stuff around is never a good thing, zinc moves stuff around, eating vitamin A moves stuff around they are both detrimental in my experience. The problem is how is it going to move out when the bile acid transporters have been down regulated due to the toxic effect of the drug?

bile acid transporters? you mean like the ability to secrete bile? I secrete loads of bile. My diet is like +60% fat and I don't have any fat malabsorption. Also, the liver flush excreted a lot of bile into my stool. Read tryingtohelp2014's post #6045. He knows what he's talking about


Resources for people looking to heal: http://bit.ly/fixingaccutanedamage
Some of the tests I've had over the years of being ill: http://bit.ly/testingresults
My symptoms I've suffered from (includes accutane dosage): http://goo.gl/ZmNCHN
Email I can be contacted at: optimumpremonition2 at gmail dot com


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I want to add something. Maybe that is a key to another step to find a solution or it is just a fortuity.

One year after end accutane treatment I had another but it was a treatment caused by long stomach problems - not related with accutane.

This treatment had been lasted for one year and at least one medicine caused fast libido decrease.

I suppose that this medicine could react with the rest of accutane in my organism.

The list of substances (in medicines) I took that time:

- sucralfatum,

- famotidinum,

- trimebutinum,

- lansoprazolum,

- pankreatinum,

- alprazolamum,

- trimebutini maleas,

- metoclopramidum hydrochloridum,

- pantoprazolum,

- omeoprazolum,

- mebeverini hydrochloridum,

- acidum ursodeoxycholicum,

- metronidazolum,

- inulin,

- lactobacillus acidophilus.

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Manganese (with the other recommended vitamins) has increased my hair shedding, skin shedding, increased head pressure, and made me have a bloody nose. Lovely. I may need to take a break from this regimen.

what exactly are you taking? how much, and when?

sounds like youre moving something around.

Moving stuff around is never a good thing, zinc moves stuff around, eating vitamin A moves stuff around they are both detrimental in my experience. The problem is how is it going to move out when the bile acid transporters have been down regulated due to the toxic effect of the drug?

This is as simple as it gets for me.....

*If* we have something to move around.... IF....

There is only ONE known way to conjugate any excess retinoid metabolite out of the body. ONE.

Thats thru phase II glucuorination by way of the glycosyltransferases UGT

There is only ONE nutritional rate limiting cofactor that we can control for this process. manganese. thats it... there is no other way. if anyone can tell me one, post a study.

Now, I'm not talking about pre or pro Vitamin A from foods. We didnt have a problem clearing these things before taking accutane. If we start talking about this, then of course Vitamin D, or any other fat soluable antagonist comes into play. Im just talking about whatever bastardized metabolite that might still be in us.

Edited by tryingtohelp2014

If you have a majority of the following: Joint pain,Brain fog,lethargy,high bilirubin,dry skin, night-blindness, sweat easily, thin easily damaged skin, poor wound healing, dry brittle hair..... Please get a RBC copper, ceruloplasmin, plasma copper,  RBC zinc and a Vitamin D test ASAP


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So how many MG's of manganese should a 220 lb person take?



Yes look up:

Terry Wahl's book called:

Minding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair.



If she can do that.... why can't we fix ourselves?

Like wtf.

Edited by Duul

My Accutane Story:

Accutane is Chemotherapy marketed as an Acne drug.

Used to treat cancers in all parts of the body including the brain.

That is Criminal.


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Here is another forum with accutane users figuring out chronic fatigue:

http://forums.phoenixrising.me/index.php?search/17436122/&q=accutane&o=date


My Accutane Story:

Accutane is Chemotherapy marketed as an Acne drug.

Used to treat cancers in all parts of the body including the brain.

That is Criminal.


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I'm taking:

Manganese (15mg)

Alpha GPC (choline 600mg 2X/day that's what it says for the daily dosage)

L-glutamine (1000mg 2X/day)

B-complex (each around 100mg or 100mcg depending on B vitamin)

Redmond clay (2175mg)

L-Carnitine (1,270mg) Powder

Undecenoic acid 250mg (candida)

**Vitamin D 5,000mg

*I have not been taking Molybdenum

I do think the increased hair shedding at the very least is due to the vitamin D. I started taking it since my bones were feeling achy as they start to as i get less sunlight in the winter. it makes my gums, teeth ,and bones feel better. I'm sure based upon what was said though it can have effects on A receptors. Correct? What exactly is the mechanism between A and D? Sorry to get anyone's hopes up, but it sounds like it's working for others so far.



Happy New Year!!!



**5,000IU's sorry

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Interesting topic on hair quality post tane


My Accutane Story:

Accutane is Chemotherapy marketed as an Acne drug.

Used to treat cancers in all parts of the body including the brain.

That is Criminal.


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Just remember that the knowledge we have accumulated can always be put to use helping others, in different situations.


My Accutane Story:

Accutane is Chemotherapy marketed as an Acne drug.

Used to treat cancers in all parts of the body including the brain.

That is Criminal.


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Some info I found on liver and tane.

Introduction

Isotretinoin is a vitamin A derivative used in the treatment of severe acne and some forms of skin, head and neck cancer. Isotretinoin, like many retinoids, can lead to increase in serum aminotransferase levels, but, unlike acitretin and etretinate, isotretinoin has not been clearly implicated in cases of clinically apparent acute liver injury with jaundice.

Background

Isotretinoin (eye" soe tret' i noyn), also known as 13-cis-retinoic acid, is an aromatic retinoid similar to vitamin A which is effective in treating recalcitrant nodular acne and other disorders of keratinization. Unlike vitamin A, isotretinoin is not stored in the liver and is not associated with many of the toxic effects of high-dose vitamin A therapy. Its mechanism of action in acne is believed to be mediated by activation of retinoic acid and retinoid X receptors which regulate gene expression important in normalizing cell growth and differentiation. Isotretinoin is considered a second-generation retinoid and its relative lack of receptor specificity accounts for its adverse side effects. All oral retinoids are potent teratogens and must be avoided or used with extreme caution in women of childbearing potential. Isotretinoin was approved for use in acne in the United States in 1982 and it is currently used but only under strict requirements for monitoring and birth control. Isotretinoin is available in generic forms and under several brand names (Absorica, Amnesteem, Claravis, Myorisan, Sotret, Zenatane and previously Accutane) in capsules of 10, 20, 30 and 40 mg; the usual dose in adults being 0.5 to 2.0 mg/kg per day given in two divided doses for 15 to 20 weeks. Higher doses have been used in treatment of head and neck cancers. Side effects are common and include dry skin, nose bleeds, conjunctivitis and hair loss. Use of isotretinoin has also been linked to worsening of hyperlipidemia, hyperostosis, vision and hearing loss, pancreatitis, pseudotumor cerebri, birth defects, depression and suicide.

Hepatotoxicity

Liver test abnormalities occur in up to 15% of patients on isotretinoin, although marked elevations above three times the upper limit of normal or requiring drug discontinuation are rare (<1%). The liver test abnormalities are typically asymptomatic and transient and can resolve even with continuing therapy. Clinically apparent liver injury due to isotretinoin is exceedingly rare, if it occurs at all. The acute liver injury with signs of hypersensitivity that occurs with etretinate and acitretin has not been described with isotretinoin therapy. Vitamin A-like effects on the liver with accumulation of lipids in nonparenchymal stellate cells has been described in rare patients on isotretinoin therapy, but the role of supplementary use of vitamin A in these cases was not ruled out.

Mechanism of Injury

The mechanism by which isotretinoin causes serum aminotransferase elevations is not known but it may represent a direct toxic effect, in that it appears to be more frequent with higher dose therapy.

Outcome and Management

The serum aminotransferase elevations that occur on isotretinoin therapy are usually self-limited and do not require dose modification or discontinuation of therapy. Acute liver injury with jaundice has not been clearly linked to use of isotretinoin. Patients with acitretin or etretinate associated acute liver injury have been found to tolerate isotretinoin without recurrence of liver injury, although isotretinoin is not approved and may not be as effective as acitretin in treating psoriasis.

References to isotretinoin hepatotoxicity are given in the Overview section on Retinoids. Drug Class: Vitamin A & Retinoids, Retinoids

Other Drugs in the Subclass, Retinoids: Acitretin, Etretinate
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My Accutane Story:

Accutane is Chemotherapy marketed as an Acne drug.

Used to treat cancers in all parts of the body including the brain.

That is Criminal.


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Good video to watch for the new year.

I will be retiring from the forums for now. I will post back my results later in the year.

Good luck everyone, let's transform this negative experience into a positive one.

Edited by DestroyDarkness
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My Accutane Story:

Accutane is Chemotherapy marketed as an Acne drug.

Used to treat cancers in all parts of the body including the brain.

That is Criminal.


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Ever since doing the Manganese protocol my stools become yellow.

The same happens when I use a product like

http://www.amazon.com/Foods-Liver-Detoxifier-Regenerator-Capsules/dp/B0013OQLGE/ref=cm_cr_pr_product_top

I'm leaning towards using some Super enzymes with Ox-bile to help and digest because alot of it comes undigested.

Interesting..ive experienced some of this as well. Seems to happen when people start detoxing. Going to make some artichokes today. This helps some people.

we need to pinpoint the cause for this... could be many different causes...pancreatic enzyme,liver,candida, bilirubin clearance, copper detox.

If you experience it from taking that detox brand, i would bet its from the milk thistle.

I think it could be the relationship between choline and manganese. not enough choline? One seems to drain the other when your system starts up again.

I ordered this last week.

http://www.amazon.com/Integrative-Therapeutics-Lipase-Concentrate-HP-90-Veg/dp/B0030N8M5O/ref=sr_1_2?s=hpc&ie=UTF8&qid=1420119919&sr=1-2

Edited by tryingtohelp2014

If you have a majority of the following: Joint pain,Brain fog,lethargy,high bilirubin,dry skin, night-blindness, sweat easily, thin easily damaged skin, poor wound healing, dry brittle hair..... Please get a RBC copper, ceruloplasmin, plasma copper,  RBC zinc and a Vitamin D test ASAP


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I took accutane 6-7 years ago, and I honestly feel like I'm dying.... at 22. It feels like my heart beats weaker everyday.

That they gave a medication that has been known to cause painful long-term side effects to someone at such a naive and gullible age for facial aesthetic reasons (I had moderate acne) borders on pure evil.

I strongly suspect it has also affected my ability to detox other medications from my system, making the process slower or otherwise stunted.

I've found that deep meditation helps to ease all the symptoms, interrupting the pain signals and keeping the mind focused on getting better.

I just want to also say that the strength and courage in this thread is phenomenal, considering our actual lack of support and possible psychological scarring.

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My fatigue problem has not stopped for more than a year. in fact it has worsened since I took antibiotics back in summer and three months ago. Major hair loss problem has been going on for 16 months.

I can't possibly have a colema board in my toilet which I share with other students. I can't afford regular colon hydroptherapy either.

Any other options?

I don't feel depressed by accutane induced problems anymore but since more than 3 years ago, I have been really stressed by other problems in my life. Is chronic stress and anxiety the actual cause of my problems? I don't know. Im willing to try liver flushes and colon cleanse to see if anything improves. I have nothing to lose

Edited by samantha303

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Happy New Year everyone!

Consumed a boat load of liquor last night and my skin is looking pretty. Must enjoy this day of skin while it lasts. Kind of torturous really. hehe.

I am feeling optimistic this year! I have that gut feeling ;). Still kind of drunk but defs the optimism will stay.

Stay Healthy everyone.

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Happy New Year guys.

Hope you're not feeling too bad.

I'm hopeful that this year I can make massive progress with a recovery.

I still believe that copper overload (have talked about this on my channel on YouTube) is behind the majority of side effects.


Made a video again on Accutane to warn others,

I took all my old ones down (well, I made them private) because I came across as too opinionated and a bit dick-ish.

Hopefully I can get this one seen by people, so they can avoid a similar fate to ours.

I will of course let you know once I'm better (if that does turn out to be the case)

I stand by stress and our attitude being important, too.

Edited by IndigoRush
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Samantha, do you take probiotics? I would recommend from my own experience and what you are listing to start there. Gut health has a huge impact on mental health and vice versa. Most of our serotonin is formed in the gut. You want to ensure you have good bacteria to keep your mood positive as a result. Just a thought. But everything else tha thas been listed on here is a good to incorporate too, yoga, healthy diet, reducing stress as much as possible. SLEEP is a major factor in recovery as well. I have hair loss as well. It subsides when i avoid any and all vitamin A products and foods (i get some natural betacarotene from veggies), avoid gluten, and I minimize/cut out sugar. I used the tea tree oil shampoo and conditioner (it's cheap from traders joe's to keep oil down and it has reduced shedding some). Just some thoughts, do with them what you will! Happy New Year :)

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Why do we think tane had to still be inside us? Can the receptors still be affected without tane still residing. How do you change receptors. It's gotta be them. What's the one thing that has been one of the most puzzling among us? Whether we suffer from too much or not enough vitamin a? I suffer from both. So how do the receptors get screwed and y dont they revert to prelevels?

Who knows? Just thinkin about this is taxing. I'm gunna take a break. I wish yall the best. If you guys come across info on creators or scientists that are alive. Pass the info on to me.

I believe the self searching is nuerotic. It drives me insane. I do feel a sense of family with everyone because we are the only ones who understand eachother-thus sticking around. My point again is if were gunna waste the energy and life, might as well do it trying to get to the source and people smarter than us (at least me). I'm not spouting off as I do on occasion for release. If someone finds a professional source for info please dm me. I will not stop if I have that info. I will put energy into getting a face to face sit down.

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Anyone have sleep problems? I think it's more stress-induced. I have bad dreams literally everynight. Every morning I wake up feeling depressed. Sometimes I woke up at the middle of the night crying. Has it happened to any of you before?



Samantha, do you take probiotics? I would recommend from my own experience and what you are listing to start there. Gut health has a huge impact on mental health and vice versa. Most of our serotonin is formed in the gut. You want to ensure you have good bacteria to keep your mood positive as a result. Just a thought. But everything else tha thas been listed on here is a good to incorporate too, yoga, healthy diet, reducing stress as much as possible. SLEEP is a major factor in recovery as well. I have hair loss as well. It subsides when i avoid any and all vitamin A products and foods (i get some natural betacarotene from veggies), avoid gluten, and I minimize/cut out sugar. I used the tea tree oil shampoo and conditioner (it's cheap from traders joe's to keep oil down and it has reduced shedding some). Just some thoughts, do with them what you will! Happy New Year

No not yet. I should take probiotics ASAP. I always have IBS problems and got worse after acctuane (coincidence??) For example, I feel nausious in the morning after brushing my teeth alone. Sometimes I threw up after meal even when I dont feel full at all. I have major sleep problem (nightmaires everyday). I don't think I can have a gluten-free diet but Im not a fan of most gluten-rich food such as bread. I should consult a dietitian tho. How severe was your hairloss and how long it lasted? Happy New Year everyone!



Can anyone recommend a probiotics for me? I've been recommended pure encapsulations 50b and prescript assist but both of them are quite pricey.

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