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59 minutes ago, Mr Ketogenic said:

Gladiatoro, yes I had several CT scans on my abdomen to look at the Liver and Pancreas. Normal results here.
thanks for the reply. depending on what i have to pay out of pocket, i might still get this done for peace of mind. but of course im sure my results will prob be normal as well.

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7 hours ago, Ruvik said:

New bad news

Today I was visited for my severe sexual sides from accutane by a urologist-andrologist in northern Italy, he says he sees penile fibrosis. I doubt this can explain accutane effectsany of you have similar diagnosis?

He prescribed me 2 exams, unfortunately, the months of waiting are so many, I will not have them made before summer


^This is horrifying.
I have had ED and severe genital numbness since taking the Accutane 17 years ago, but no tissue damage as far as I'm aware.
There have been a few post-Accutane guys who said they had penile shrinkage and peyronies disease from scar tissue though.
This seems somewhat common among PFS guys too, and a few of them have been diagnosed with penile fibrosis and peyronies.

Please try to coax your urologist into doing a case report if you can.

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7 hours ago, guitarman01 said:
8 hours ago, Mr Ketogenic said:

Gladiatoro, yes I had several CT scans on my abdomen to look at the Liver and Pancreas. Normal results here.
thanks for the reply. depending on what i have to pay out of pocket, i might still get this done for peace of mind. but of course im sure my results will prob be normal as well.

Im going to get a liver scan soon as my recent blood tests have lead my Dr to believe I might have stones. I've done a liver cleanse since so I'm hoping I've removed them.

But so what?, even if stones are found or something else what does that mean - it's not a cure for the bullshit  problems suffered 18 years since taking this garbage.

It'd be wishful thinking if I thought that oh they've found something, now my problems are all over, unfortunately it's just another bad reaction that my body has endured as a result of a chemo drug that I should not have taken.

This situation is completely fucked.  Roche have been so helpful :(

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Given all the muscle and joint pain, has anyone specifically had their "blood calcium" levels checked?

I'm going to get my vitamin and mineral levels tested to try and eliminate all this experimenting I'm doing to try and find a cure.

In the meantime, it's been pointed out that if you supplement with Vit D you should also take Magnesium, I missed that first time round. Would it also be beneficial to take Copper?? I'm not sure what the verdict is with Copper - some are saying it's been great while others have said it's not doing anything for them. Please share thoughts!!

On the bottle I've got it says it's good for collagen formation - in our case that's got to be a good thing right?

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10 hours ago, Mr Ketogenic said:

Gladiatoro, yes I had several CT scans on my abdomen to look at the Liver and Pancreas. Normal results here.

Hi Mr Ketogenic.
In your "What I Did About It" section, you mentioned all the things you've done for your diagnosis
Do you mind writing more in detail about each of these remedies? Thank you, much appreciated.

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2 hours ago, TrueJustice said:

Given all the muscle and joint pain, has anyone specifically had their "blood calcium" levels checked?

I'm going to get my vitamin and mineral levels tested to try and eliminate all this experimenting I'm doing to try and find a cure.

In the meantime, it's been pointed out that if you supplement with Vit D you should also take Magnesium, I missed that first time round. Would it also be beneficial to take Copper?? I'm not sure what the verdict is with Copper - some are saying it's been great while others have said it's not doing anything for them. Please share thoughts!!

On the bottle I've got it says it's good for collagen formation - in our case that's got to be a good thing right?

I'll go down the list here for u. Obviously we are not all the same, but when it comes to main causes we are trying to figure out,
Calcium normal
itvitamin d normal
MagnEsium normal
Copper normal tested twice
Vivitamin e normal
Me Not normal

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https://www.sigmaaldrich.com/content/dam/sigma-aldrich/docs/Sigma/General_Information/2/biofiles_issue11.pdf

13-cis-Retinoic acid (RA) has anti-inflammatory and anti-tumoraction. The action of RA is mediated through RAR-β and RAR-α receptors. RA attenuates iNOS expression and activity in cytokine-stimulated murine mesangial cells. It induces mitochondrial membrane permeability transition, observed as swelling and as a decrease in membrane potential, and stimulates the release of cytochrome c implicating mechanisms through the apoptosis pathway. These activities are reversed by EGTA and cyclosporin A. RA also increases MMP-1 protein expression partially via increased transcription.

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2 months ago I started eating a lot of raw green vegetables. I want to share that I've been experiencing ups and downs since I started this, but that overall there have been some very noticeable improvements in my health. It's still early on so I don't want to get into a quantitative assessment of how much each of my individual symptoms have improved, but in energy, digestion, libido, and cognition - there has been marked positive changes. I mainly eat spinach and broccoli, every day (also avoid dairy, bread, and pasta). Spinach is high in folate, beta-carotene, vitamin K2, iron, copper, magnesium - but because of a study (search "isotretinoin b12 deficiency" on google) that shows post accutane levels of b12 and folic acid are much decreased, I think the folate is probably playing a hell of a big role. More people, accutane and finasteride alike, might really benefit from a folate test. One more thing, I've been replacing animal fats with mixed nuts, these carry hella nutrition as well.

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For anyone who is interested in blood results post accutane here are mine. 
571378384d9f9_Bloodtest.thumb.jpg.2d5bad
Keep in mind that i was taking Folate as metafolin 100%rda, Tudca 250mg 2x, choline bitartrate 650mg 2x, TMG 2x for 1 month every day before taking this blood test.

(took accutane for 2 weeks 10mg, 10 months after still no libido/ genital numbness, depression, tinnitus, IBS, etc)

Edited by accutanesuckss

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1 hour ago, accutanesuckss said:

For anyone who is interested in blood results post accutane here are mine. 
571378384d9f9_Bloodtest.thumb.jpg.2d5bad
Keep in mind that i was taking Folate as metafolin 100%rda, Tudca 250mg 2x, choline bitartrate 650mg 2x, TMG 2x for 1 month every day before taking this blood test.

(took accutane for 2 weeks 10mg, 10 months after still no libido/ genital numbness, depression, tinnitus, IBS, etc)


Nice to see someone speaks dutch as well... Belgium or Holland?

For the english speakers:
The lowest "H"  = Galzuren in serum = Bile Acid's in Serum
Right below there's a remark about Manganese. 6.8 nmol/l. So although thats considered normal it is pretty low.

So there's the big Vitamin D again. Again a deficiency.

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5 hours ago, accutanesuckss said:

For anyone who is interested in blood results post accutane here are mine. 
571378384d9f9_Bloodtest.thumb.jpg.2d5bad
Keep in mind that i was taking Folate as metafolin 100%rda, Tudca 250mg 2x, choline bitartrate 650mg 2x, TMG 2x for 1 month every day before taking this blood test.

(took accutane for 2 weeks 10mg, 10 months after still no libido/ genital numbness, depression, tinnitus, IBS, etc)

man, that is a low, low, very short dose of accutane to be having all those problems. that is crazy. so the elevated bile in the serum? maybe just due to the type of supplements you were taking? actually never mind that range dosnt seem to be any cause for concern after some quick googling. not 100 percent sure though. Edited by guitarman01

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anecdote from another msg board....


Vitamin D: A Cure for Tendonitis
I have had tendonitis in both shoulders for 6 years and have suffered greatly. I have had to have cortisone shots in both shoulders just to get the pain down to a manageable level. 

Last year my doctor happened to run a Vitamin D test on me a I was at an 8-not normal. He iniatially put me on a 50,000 IU dose and then tapered me to a 1000 IU a day. Within the first 2 weeks the pain and tendonitis was gone from my shoulders as documented by my orthopeadic doctor. 

One month ago my husband finally asked me to get the Vitamin D for him to see if it would help with his tendonitis. Miracously again within 2 weeks the pain was gone and has stayed gone. 

Without Vitamin D your body can't absorb calcium therefore it leaches out into your joints causing tendonitis. 

People normally get Vitamin D from the sun, but many people who either stay inside alot or live up North do not get alot of sun, thus having a deficiency of Vitamin D. 

Vitamin D defiency also causes bone pain and muscle pain.
 
iris986 | Jan 08, 2010

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6 hours ago, tryingtohelp2014 said:
anecdote from another msg board....


Vitamin D: A Cure for Tendonitis
I have had tendonitis in both shoulders for 6 years and have suffered greatly. I have had to have cortisone shots in both shoulders just to get the pain down to a manageable level. 

Last year my doctor happened to run a Vitamin D test on me a I was at an 8-not normal. He iniatially put me on a 50,000 IU dose and then tapered me to a 1000 IU a day. Within the first 2 weeks the pain and tendonitis was gone from my shoulders as documented by my orthopeadic doctor. 

One month ago my husband finally asked me to get the Vitamin D for him to see if it would help with his tendonitis. Miracously again within 2 weeks the pain was gone and has stayed gone. 

Without Vitamin D your body can't absorb calcium therefore it leaches out into your joints causing tendonitis. 

People normally get Vitamin D from the sun, but many people who either stay inside alot or live up North do not get alot of sun, thus having a deficiency of Vitamin D. 

Vitamin D defiency also causes bone pain and muscle pain.
 
iris986 | Jan 08, 2010

You read this and think yeah this is our problem - we all need to address a Vit D deficiency but why doesn't supplementing with D doing anything??

Are our stomach's so stuffed up or is it our livers just can't process D or are they so full of Vit A that D can't get processed correctly??

What about the other fat soluble Vitamin - E, how does this fit into the equation?

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7 hours ago, TrueJustice said:

You read this and think yeah this is our problem - we all need to address a Vit D deficiency but why doesn't supplementing with D doing anything??

Are our stomach's so stuffed up or is it our livers just can't process D or are they so full of Vit A that D can't get processed correctly??

What about the other fat soluble Vitamin - E, how does this fit into the equation?

it could be our livers and it also could be our actual skin.  accutane messes with cyp7a1.  it messes with the substance needed to convert the sun exposure to vitamin D in our skin.  i posted that msg because her level was 8...mine was 9!  i have shoulder tendonitis just like her.  that is probably my main symptom other than extremely dry skin.   and Vitamin D has been know to help with that as well.   im trying to focus on everything 13 cis retinoic acid has been confirmed to alter or that the body needs to detoxify it with.  methyl groups, copper, vitamin D,manganese(needed for UDPGA)

some guy msg'd me vitamin D along with magnesium and K2 solved 95% of his problems. 


from that guys blood test.... it showed increased bile acids.   this is why more people need to post bloodwork scans.  why doesnt it work for some people?  have you been tested and retested?  it takes months to get levels back up.   
vitamin E stops retinol from being oxidized to retinoic acid.  cant hurt!   

GET TESTED AND POST SCANS!!!!!  dont just say im normal.. i call bullshit on anyone who doesnt post scans.  we need to see the actual levels of everything.

here is a study showing vitamin D deficiency causing the bile acid problem:

RESULTS

Bile Acid Metabolism Is Dysregulated in VDR−/− Mice

Activation of VDR in the intestine by 1α,25-dihydroxyvitamin D3 or lithocholic acid results in the induction of bile acid-detoxifying genes such as CYP3A4 (22, 25, 26). To determine the extent of VDR contribution to bile acid metabolism in vivo, we measured the bile acid pool size and composition in VDR−/− mice. Surprisingly, we found that VDR−/− mice had an ∼30% larger bile acid pool size at 3 months of age and more than twice the amount of bile acids at 6 months of age as their wild-type littermates (Fig. 1A). The loss of VDR also increased the hydrophobicity of the bile acid pool due to a greater increase in taurocholic acid relative to tauromuricholic acids (Fig. 1A).

http://www.jbc.org/content/285/19/14486.full
 

Edited by tryingtohelp2014

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Liver function is crucial for physiological vitamin D metabolism. Patients with chronic liver disease and cirrhosis have very high prevalence of vitamin D deficiency and insufficiency [71]. Low vitamin D levels in these patients are possibly due to limited sunlight exposure, impaired intestinal absorption and decreased hepatic 25-hydroxylation activity [71]. Given the correlation between plasma levels of vitamin D metabolites and intestinal CYP3A4 content/activity, low levels of vitamin D metabolites in patients with cirrhosis might result in a reduction in CYP3A protein expression. Indeed, it has been noted that intestinal CYP3A4 expression and function are reduced in patients with cirrhosis [72]. Although reduced metabolism of drugs is typically attributed to decreased liver function, decreased intestinal CYP3A activity may also contribute to greater drug exposure in these patients. Whether vitamin D supplementation could rescue intestinal CYP3A expression in these patients is something to be considered.

5. Concluding remarks

Hormonal control of CYP3A4 expression by vitamin D represents the foundation of a potentially important interplay between xenobiotic and vitamin D metabolism. Enterohepatic cycling of vitamin D could be a functionally important pathway for delivery of active hormone to the upper intestine, resulting in preferentially higher levels of expression of VDR target genes, such as TRPV6, calbindin D9K and CYP3A4, in the duodenum and jejunum, in comparison to the ileum and colon. Intra- and inter-individual differences in vitamin D levels may contribute to the considerable variability in intestinal CYP3A4 content that affects drug disposition and pharmacological response. Interestingly, CYP3A4 catalyzes vitamin D biotransformation down pathways that appear catabolic in nature. Certain drugs, such as anti-epileptic drugs, that can induceCYP3A4 expression in the liver and small intestine, accelerate vitamin D catabolism and may contribute to vitamin D deficiency, although a causal mechanistic link between CYP3A4 induction and vitamin D deficiency requires further evaluation.

.......

Accutane induces CYP3A4 and couldve caused the Vitamin D deficiency by itself.  I would not take vitamin D without Magnesium and K2.   Magnesium is needed to convert D into its active metabolite.  


also:   Vitamin D induces CYP3A4

Bile acids are the major products of cholesterol catabolism, which have important physiological functions in human body. They facilitate not only the elimination of cholesterol and body wastes but also the digestion of fat and the absorption of lipid soluble vitamins. Bile acids also play a role as signalling molecules in the fine-tuning of energy homeostasis (5,6). However, bile acids are toxic when accumulated in high concentration. Cholestasis is the impairment of bile flow and is characterised by the accumulation of bile acids in the liver and serum (7). The accumulated bile acids are toxic and critical in the pathophysiology of cholestasis. A major aim of cholestasis treatment is to reduce the concentration of toxic bile acids in both blood and liver.

There are adaptive responses in the body to decrease the pool of bile acids to protect the body from their toxicity. These responses include decreased synthesis, increased metabolism and renal elimination of bile acids. Nuclear receptors have the important functional roles in these responses and hold much promise in the treatment of cholestasis (10). CYP3A4 is the major enzyme for the detoxification of bile acids, hydrolysing bile acids to facilitate their subsequent glucuronidation by UDP-glucuronosyltransferases (UGTs) (11). Stimulation of CYP3A4 activity could be employed for the treatment of cholestasis. http://atm.amegroups.com/article/view/2933/3853

Edited by tryingtohelp2014

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7 hours ago, tryingtohelp2014 said:

i call bullshit on anyone who doesnt post scans.

I call bullshit on your bullshit. You have been leading people astray since day one and not coming clean about any of it.The vets on here know what im talking about. So now you think people are just making up blood test results if they dont support your theories? that is some lame ass shit. you havent been tryingtohelp anyone but yourself. where do you think your going anyway? your the copper man remember? its 100 percent the copper doing it right? you tell people on here what kind of copper supplement you were taking?(you know the one that had 10 other vitamins in it?)like the time you said sam-e was giving you more energy when you were also drinking red bulls for breakfast. il post some scans i do have when i get the time, but it sure as hell wont be to appease you. i have zero respect. So now we are sliding into Vitamin D, thats great I think it might be vitamin d too.

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I've been supplementing vit D 1 x 10,000iu every 2-3 days for over a year now, pretty consistently. It's one of the supplements I've continued with as I notice if I stop. The other thing I've continued with pretty constantly is eating pumpkin seeds. Again I notice if I stop eating these (they're a good source of zinc and manganese amongst other things). I also notice I feel really good the day after a sunny day where I've been out in the sun, so potentially this is down to vitamin D. 

Whenever I've been tested (blood) my vit D levels have been low, but never under the bottom of the range. I've not been tested since starting to supplement though. 

Edit: Forgot to add, also continue to take taurine daily as the calming/anti-stress effects from it are noticeable. 

Edited by tanedout

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haha. well, i dont have med insurance so i can't post scans. i have to go on trial and error and anecdotal advice. So please, don't stop, but I like your guys' argument. I can't choose a winner. Both of y'all make good points. 

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6 minutes ago, TrueJustice said:

What is Vit K good for again??
Tells calcium where to go in your body, in layman's terms. Vitamin K2 that is.

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3 hours ago, HaniaD said:
3 hours ago, TrueJustice said:

What is Vit K good for again??
Tells calcium where to go in your body, in layman's terms. Vitamin K2 that is.

Are we needing to supplement with K2 because of accutane or just because it works well when taking Vit D & magnesium??

I think I might benefit from K2 but don't want to add to current regime if it's not going to do much!?

Ive felt a little less stiff in recent days after hitting the Vit D/Magnesium in last week or so. My back feels better!

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I have not read this in awhile. 

Not up to date on a lot of this stuff or what has been recently said. However, have a LOT OF INFO to share, specifically with respect to a radical change in my blood work, new symptoms & progressions, and genetic information which I have combed through extensively.

i will post all of this once I finish this semester of school and have time. However, I will put the most important info here for now.

ive had blood work every month for years just as a health nut so ofc bc and after accutane.

noticed complete ED my first week of college. Just knew it was accutane. From the start. But I gave up because this forum just makes me miserable (no offense)


IMPORTANT STUFF
longstanding folate defiency became way too high 2 weeks after stopping accutane
**LDH TRIPLED two weeks after and has remained bad since. 200 to 700, consistent Val's before and after
hypercalcemia induced by cessation of accutane. From 8.5 to 11.5. Consistent as well.
v

hope I get some responses on those three things in the morn, esp about LDH. The docs thought I had cancer. 

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3 hours ago, Weltschmerz47 said:

I have not read this in awhile. 

Not up to date on a lot of this stuff or what has been recently said. However, have a LOT OF INFO to share, specifically with respect to a radical change in my blood work, new symptoms & progressions, and genetic information which I have combed through extensively.

i will post all of this once I finish this semester of school and have time. However, I will put the most important info here for now.

ive had blood work every month for years just as a health nut so ofc bc and after accutane.

noticed complete ED my first week of college. Just knew it was accutane. From the start. But I gave up because this forum just makes me miserable (no offense)


IMPORTANT STUFF
longstanding folate defiency became way too high 2 weeks after stopping accutane
**LDH TRIPLED two weeks after and has remained bad since. 200 to 700, consistent Val's before and after
hypercalcemia induced by cessation of accutane. From 8.5 to 11.5. Consistent as well.
v

hope I get some responses on those three things in the morn, esp about LDH. The docs thought I had cancer. 

6. The activities of lactose dehydrogenase (EC 1.1.1.27, LDH) and glucose-6-phosphate dehydrogenase (EC1.1.1.49, G6PDH) were found to be significantly (P < 0.05 and P < 0.01 respectively) increased in Cu-deficient animals and G6PDH activity was significantly (P < 0.01) decreased as a result of lactose consumption.

7. The observed changes in antioxidant enzyme activities associated with both Cu deficieny and lactose consumption may have important implications for the development of free radical mediated cell damage. However, no significant differences in either hepatic or cardiac levels of thiobarbituric acid reactive substances, a measure of lipid peroxidation, were found.

Abstract

Copper ions are known to inactivate a variety of enzymes, and lactate dehydrogenase (LDH) is exceptionally sensitive to the presence of this metal. We now found that NADH strongly enhances the Cu(II)-mediated loss of LDH activity. Surprisingly, NADH was not oxidized in this process and also NAD+ promoted the Cu(II)-dependent inactivation of LDH. Catalase only partly protected the enzyme, whereas hypoxia even enhanced LDH inactivation. NAD(H) accelerated sulfhydryl (SH) group oxidation of LDH by 5,5-dithio-bis(2-nitrobenzoic acid) (DTNB), and, vice versa, LDH-mediated Cu(II) reduction. LDH activity was preserved by thiol donators and pyruvate and partially preserved by lactate and oxamate. Our results suggest that reactive oxygen species (ROS) are of minor importance for the inactivation of LDH induced by Cu(II)/NADH. We propose that conformational changes of the enzymes' active sites induced by NAD(H)-binding increase the accessibility of active sites' cysteine residues to Cu(II) thereby accelerating their oxidation and, consequently, loss of catalytic activity.

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