3 hours ago, Washer said:

You should try out Boron since you're taking Iodine. I've had really good success with it in terms of helping my energy levels, mood and libido. Remember that B2, B3, Selenium and Celtic/pink sea salt also are cofactors when supplementing with Iodine. In my opinion Boron is very needed when taking Iodine. Aids your body so much. Underrated supplement.

Start out with 6mg Boron (I recommend the Natures Way brand) and see how you feel. It's not a miracle worker by any means, but I think it'll help you a bit.

And for the Zinc debate - it never helped me in terms of anything.

Cofactors - wouldn't this be covered in taking a quality multivitamin?

I mean that's the thing with trying to get out of this bullshit, is it because I didn't take 6g of boron with the right ratio of magnesium whilst doing a headstand while I take just the right amount of Iodine at exactly the right time during the day.....for fuck sake!!

Or should I just accept that I'm damaged and until some "lab guru" comes up with a magic pill I'm basically fucked - why can't I accept that after the thousands of dollars spent over the last 20 years?

And what was it that I actually did in a previous life to cop this shit in this one?

people that have had a urinalysis, you have any ketones or protein in your urine?
Ketones could be a sign of dehydration, or possibly something else going on. This prob wouldnt get flagged on your test unless you were a known diabetic.but if any of us are showing ketones, this could be a useful marker.
For instance my last test was at 80mg ketones, NORMAL IS NONE. This elevated level isnt due to diabetes.

This was last sept, I just tested again and should have the results in a few days.

And we are always talking about the liver and gut, What about kidney function?
You guys piss less since taking accutane?

I dont think Testosterone is the cause of everything going on here, but if you got low T, by all means treat it, it could make a life changing difference im sure.
These test results were yearspost accutane.

41 minutes ago, guitarman01 said:

people that have had a urinalysis, you have any ketones or protein in your urine?
Ketones could be a sign of dehydration, or possibly something else going on. This prob wouldnt get flagged on your test unless you were a known diabetic.but if any of us are showing ketones, this could be a useful marker.
For instance my last test was at 80mg ketones, NORMAL IS NONE. This elevated level isnt due to diabetes.

This was last sept, I just tested again and should have the results in a few days.

And we are always talking about the liver and gut, What about kidney function?
You guys piss less since taking accutane?

I dont think Testosterone is the cause of everything going on here, but if you got low T, by all means treat it, it could make a life changing difference im sure.
These test results were yearspost accutane.

Testosterone, Free	23ng/dL	9 - 30 ng/dL
Testing performed by Equilibrium Dialysis. Test Performed by: Mayo Clinic Laboratories - Rochester Main Campus 200 First Street SW, Rochester, MN 55905 Laboratory Director: Franklin R. Cockerill, III, M.D.
Testosterone, total, Serum	738ng/dL	240 - 950 ng/dL
Testing performed by Liquid Chromatography-Tandem Mass Spectrometry (LC-MS/MS). Test Performed by: Mayo Clinic Laboratories - Rochester Main Campus 200 First Street SW, Rochester, MN 55905 Laboratory Director: Franklin R. Cockerill, III, M.D.

Yep looked at comprehensive Kidney cleanse late last year - did the Dr Schultz cleanse. Sorry but did nothing and it's considered to be a top notch product, tinctures and teas etc for 7 days. Thought it might assist with all the dryness but nope didn't help.

Isotretinoin therapy induces DNA oxidative damage.

Does anyone have any suggestions for libido recovery other than no PMO for months since you go back to square one after just once? Also, why is that, and what part of your brain deals with that?

6 hours ago, IntimateHemp said:

All more crap, none of these supplements have or ever will fix retinoic acid damage. Accutane Is a different drug screws with everything all over our body whatever it does it sure doesnt grow healthy glands .it kills them. our adrenaline and other hormone producing gland systems ya ya ya are also turned off from accutanes acidic damage. all we know. get on TRT, eat perfect, live.... just trying to help.Ive been on trt for quite sometime and just to be honest with you guys (gals, you look nice today) its helped a ton. Course my T is up over 1500. But I like it that way, what else am I going to be weak tired with muscle loss low ED, and depression? Screw all that get the t up.. trust me I hate accutane it ruined my life but if they did this too us whos to say we follow any norms after they did something like that to us. Hope you all are doing financially okay and enjoying the day.

So TRT helped you? How much?

On 3/20/2017 at 9:29 PM, guitarman01 said:

What about the Vasculitus, is this systemic? How was this diagnosed?
And did you have a sinus ct scan?
Any damage to the sinus structure?
Other people might have similar things going on, so just trying to get the most information, thanks.

temporal artery biopsy. also had a skin biopsy in that area about a year ago.. found intracellular edema and perivascular lymphocytic infiltrate.. topical fluocinomide now
yes, here http://imgur.com/a/jQpEe
most severe sinus disease they have seen at this imaging center.. (all the gray parts of my sinuses are supposed to be black)
to anyone reading this who is suffering from post-accutane depression, know that there is someone worse off than even you, literally the inside of my face is visibly destroyed a year and a half after stopping this drug, and i am still thinking positively and approaching each day and my struggles proactively. i have scheduled surgery to get the cysts and 2+ centimeters of circumferential thickening taken out of my face

i also had an mri (arthrogram) of my shoulders and have serious labral / rotator cuff tears, both requiring surgical repair. i believe i got too into bodybuilding as a result of trying to overcome the permanent damage from accutane. i believe i was predisposed to these injuries as the chance of it happening in both shoulders is so low.. only explanation is accutane weakened my cartilage

i am scheduled for more surgeries than i can count on one hand this summer.

i am still 20, look physically healthy with well-developed musculature, have a 4.0 in school, etc, and i still have lost so much to accutane. i am not going to be able to transfer back to the ivy i left last year.

i have added pentox to my regimen. my current biggest concern still is by far my penis. i am too embarrassed to go back to a urologist. i am now taking 50mg proviron, between 5-10 mg of cialis depending on day, and 400x3=1200mg pentox a day. next item i will tackle aside from this and my surgeries will be my memory. i have trouble memorizing stuff, before i had a photographic memory

to some extent it brings me happiness that the debilitating damage i have personally suffered from accutane is finally having significant, serious physical manifestations that can be objectively measured through imaging and biopsies. this is clearly not solely a mental or a hormonal issue, and no doctor can argue with me anymore that accutane destroyed my body. i have a ridiculous amount of problems for a usually healthy, formally athletic 20 year old

we all need to keep fighting.

i havent read the past several pages of this thread but i am starting to believe that my problem goes well beyond accutane.

for example, i have previously posted that i have very high ldh, hypercalcemia, high blood protein, ridiculously low T and DHT for a 20 year old (391, 20), out-of-range low SHBG, imaging and biopsy studies demonstrating a multitude of physical manifestations of my health struggles (e.g., a couple i havent mentioned yet is lung nodules found on an MRI ["wait and see" approach rn], moderate gynecomastia found on an mri, but while muscular and with a low bmi, etc)

this is all completely objective medical information. i have recently been discussing with my parents going to Mayo Clinic to find out what is wrong with me. first and foremost i would like to say that this community has been a huge help to me in that others are struggling with very similar symptoms and a few of your guys' approaches have helped me at times. most importantly, its a good support network, especially for those regular posters that stay positive and cite studies and such.

but at this point i feel like i simply have too much proof of there being something systemically wrong with my body that there is no way it can be accutane.

further, if we are all suffering from accutane, which im really becoming less sure of now, i think there needs to be a new, private community elsewhere where we can post objective medical information and research studies in order to create a productive and constructive dialogue.

sorry.. one more question before i dip out..

has anyone here had blood glucose tested and such? its such a simple test and i feel like ive been completely overlooking it for awhile

Anyone tried a high dose of pregnanolone before, i.e. 50-150mg daily??

Someone else was on about this recently, and Ive just been reading some more on swole source (PFS guys). Suggested dosage to get benefits is like 150mg/day, whereas Ive just dug out the bottle of this stuff from when I was taking it and its 10mg caps, so probably nowhere near enough.

Quote

 

Yes, it does work well, but for shrinkage and low LH I would also try high dose pregnenolone. Either by itself or together with gonadin.

High dose oral preg fixed the tightness and shrinkage in my sack. Many others as well. Try 150mg of pregnenolone in the morning.

 

 

 

[Edited link out]

Studies have show this is depleted by taking finasteride, so chances are it is also depleted in our cases. It higher doses (50mg+) it lowers cortisol and estrogen, and is essentially a building block for other hormones including testosterone.

Also not sure if anyone has seen this Feb 2017 Finasteride study on the long term effects. Pretty interesting read, and its good to see more in depth studies like this, specifically on the persistent sexual sides;

Safety Profile of Finasteride: Distribution of Adverse Effects According to Structural and Informational Dichotomiesof the Mind/Brain

Quote

Finasteride is currently used extensively for male androgenic alopecia and benign prostatic hyperplasia; however, some adverse effects are severe and even per- sistent after treatment cessation, the so-called post-finas- teride syndrome. The following most severe adverse effectssexual dysfunction and depressionoften occur together and may potentiate one other, a fact that could explain (at least in part) the magnitude and persistence of finasteride adverse effects. This paper presents the phar- macological action of finasteride and the corresponding adverse effects, the biological base explaining the occur- rence, persistence and distribution of these adverse effects, and a possible therapeutic solution for post-finasteride syndrome.

[Edited link out]

8 hours ago, Weltschmerz47 said:

most severe sinus disease they have seen at this imaging center

7 hours ago, Weltschmerz47 said:

but at this point i feel like i simply have too much proof of there being something systemically wrong with my body that there is no way it can be accutane.

If you havent yet you really should get a ceruloplasmin and copper serum blood test to calculate your free copper and see if anything abnormal is going on there. you can do this easy and quick enough on your own by going to walkinlabs or directlabs. I'd maybe get a zinc serum too if you havent, to see where that is at as well.
Your symptoms are so extreme its worth checking this at least once.
Not just copper, but other metal free ions as well as deficiencies are capable of systemic inflammation and can contribute to very debilitating disease processes, like alzheimer's, vasculitis, MS and ultimately brain damage. And im not just talking about whats in the blood or tissues, but the spinal fluid and brain as well.

No, I dont think this is just accutane going on either, not anymore, but it flipped a switch on something that seems much worse then just vitamin a toxicity. There is a scenario where there could be abnormal metal trafficking going on that doesn't have a classified disease.

To give you a couple examples of a metal toxicity that might pertain to you:

Preface from the book "Wilson's Disease: A Father and Son's Journey Through Hell and Back Again"

http://www.jeffslegacy.com/book.html
just a quick excerpt
The doctor then decided that Jeff had a degenerative sinus bone disease and would need a special operation to repair it before his entire sinus structure dissolved.

on Vasculitis or what can mimic other diseases

[Rapidly progressive ANCA-negative glomerulonephritis in the course of pauci immune microscopic vasculitis with hemolytic anemia probable in the course of Wilson's disease].

Diagnostic Considerations

Clinicians must maintain a high index of suspicion for Wilson disease, particularly in the presence ofonly mild elevation of transaminases, or isolated neuropsychiatric involvement.^[2]

Conditions to consider in the differential diagnosis of Wilson disease might include the following:

• Autoimmune chronic active hepatitis
• Aceruloplasminemia
• Glycogen-storage disease type 0
• Glycogen-storage disease type I
• Glycogen-storage disease type II
• Glycogen-storage disease type III
• Glycogen-storage disease type IV
• Glycogen-storage disease type V
• Glycogen-storage disease type VI
• Glycogen-storage disease type VII
• Hepatocellular adenoma
• Cirrhosis
• Multiple sclerosis
• Huntington disease
• Depression
• Antisocial personality disorder
• Parkinson disease
• Leukodystrophy
• CNS vasculitis
• Leigh disease
• Neurodegenerative disease
• 1-antitrypsin deficiency
• Chronic anemia

A case of hyperzincemia with functional zinc depletion: a new disorder?

Nowim not telling you to take more zinc, there could be a scenario where zinc is toxic as well.
But its def worth getting tested, if you havent.

On 8/18/2016 at 0:49 PM, cnb30 said:

Does anyone here get like mini seizures in the back of their head and feel really awkward and twitchy (like when you turn your head you just twitch it in different directions)?

like this shit. This doesn't seem like vitamin a toxicity. this is closer to parkinson's.

High dose pregnenolone should result in an increase in testosterone without aromasing into estrogen, one of the PFS guys who seems to really know his stuff (and seems to be managing his sides quite well, essentially through research and supplementation) states the following to someone asking why everyoneisn't doing 150mg/pregnenonlone daily;

Quote

I actually tried preg two years ago when I first came off [finasteride] but at a super low dose (50mg) and didn't do shit. Then when the study came out showing PFS patients are severely depleted in progesterone (which also is why they are depleted in allopreg and the further metabolites of progesterone like THDOC etc), it makes sense why high doses are needed since high doses of preg wil dump to progesterone. Using progesterone instead can work too, but it is a little more tricky to get the dose right. That is why I suggest trying high dose preg first because your body will regulate how much prog it gets.

The estrogen is not an issue with preg, but yeah you stack whatever you want with it, doesn't matter. Yes, it would help prevent it, hence why many people actually need to take preg with andro or their estrogen drops too low. I haven't seen many people here try that combo but on RP there are.

The people who don't respond to preg after a week or so of high dose supplementation, I usually just tell them to go directly to progesterone and dhea combo and that works for them.

It is not a 100% silver bullet but it fix many of your issues and of course you are pushing your body back in the right direction.

[Edited link out]

This could be well worth a look, especially for people who are specifically attempting to boost T

Trust me Weltschmerz, in my case at least, it is undoubtedly the accutane. Even if there wasn't so much evidence suggesting a correlation to the problems i have now (which there is),I would still whole heartedly associate them with this drug. The person that I was before is half of what I am now, physcially, cardiovascularly, and neurologcially.

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

I took some time to try a nap and ended up meditating for a bit and was surprisingly successful in forcing myself to cry, which it has been several years since I have done so. It was good and calming to feel human for a brief moment. It is a long road and I think we do make improvements as time goes on, it feels akin to about 1-2% improvement each year.

15 hours ago, guitarman01 said:

Vitamins at physiological levels cause oxidation to the DNA nucleoside deoxyguanosine and to DNAalone or in synergism with metals

30 March 2012

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Abstract

Vitamins with antioxidant properties have the ability to act as pro-oxidants, inducing oxidative damage and oxidative stress as opposed to preventing it. While vitamin supplements are commonly consumed, the scientific evidence for their health beneficial effects is inconclusive. In fact, even harmful effects have been reported. The present study aimed to investigate and compare pro-oxidant properties of different antioxidants and vitamins commonly found in dietary supplements, at concentrations of physiological relevance, alone or in combination with metals also found in supplements. Focus was on damages related to DNA. The vitamins chemical oxidation potencies were studied by measuring the amount of the oxidation product 8-oxo-7,8-dihydro-2-deoxyguanosine (8-oxodG) formed from the DNA nucleoside deoxyguanosine (dG) after vitamin exposure, using a high-performance liquid chromatography system with electrochemical and ultraviolet detection. To study the vitamins ability to cause DNA damage to cultured cells, promyelocytic leukemia cells (HL-60) were exposed to vitamins, and strand breaks, alkali-labile sites and oxidative DNA lesions, i.e. formamido pyrimidine DNA glycosylase-sensitive sites, were detected using the comet assay. Vitamins A and C chemically induced oxidation of dG, alone and in synergism with iron or copper, whereas only vitamin C and copper induced DNA damage in cultured cells. Contrary, vitamins B1, B2, B3, B6 and B12, -carotene, folic acid, -tocopherol, -tocopherol or -tocopherol did not induce oxidative damage to dG, while lycopene induced a weak doseresponse increase. Taken together, vitamin C and copper stood out with the strongest oxidative potency, which is of potential concern since both substances are commonly found in multivitamins.

So eating a fruit with vitamin C is no-go??

37 minutes ago, TriedmanyThings said:

So eating a fruit with vitamin C is no-go??

They are talking about higher doses, outside the normal diet. So a regular diet should be fine. im looking more how accutane might have interacted with metals in causing damage.

Vitamin C is crucial. At least 500mg a day imo. A doctor in a hospital in the US was able to increase the survival rate immensely for sepsis patients who were knocking on deaths door by prescribing Vitamin C, after he read an article in a science journal, reporting the success on i'm assuming rats or a human study of some sort. He was amazed and is imploring hospitals to try it, but of course, his peers have doubts and are motivated by other various factors.

http://pilotonline.com/news/local/health/a-norfolk-doctor-found-a-treatment-for-sepsis-now-he/article_7a3063e5-24cf-56c1-b25c-142731604196.html

3 hours ago, guitarman01 said:

They are talking about higher doses, outside the normal diet. So a regular diet should be fine. im looking more how accutane might have interacted with metals in causing damage.

Other than interacting with copper, do you think it's possible tane can somehow interact with amalgam fillings? i.e Mercury?

13 hours ago, TrueJustice said:

Other than interacting with copper, do you think it's possible tane can somehow interact with amalgam fillings? i.e Mercury?

I really have no idea about this, I wouldnt be too concerned though.

On 4/1/2017 at 1:44 AM, Weltschmerz47 said:

to some extent it brings me happiness that the debilitating damage i have personally suffered from accutane is finally having significant, serious physical manifestations that can be objectively measured through imaging and biopsies. this is clearly not solely a mental or a hormonal issue, and no doctor can argue with me anymore that accutane destroyed my body. i have a ridiculous amount of problems for a usually healthy, formally athletic 20 year old

we all need to keep fighting.

yes, unfortunately this exactly. It might take one or a few of us going through or reaching hell for doctors to start to take notice . When does normal start to become abnormal? When are things more then a coincidence? Thats why its most important to gather all the relatable symptoms people have had down the road post accutane, to make the connections.

Thats why I think its important to have the most public, easy access forum on the internet.for the people that pop in real quick and say accutane did this,this, and this to me, or share what they have been diagnosed with, blood tests,genetics or any insights. So another person can look at it and say, no kidding? me too. to see what we have in common. For instance, many people have complained of sinus isssues post tane. Yours is more severe. many people have gum/teeth issues, head fullness/pressure, brain fog, gut issues. Muscle weakness, ED.

I dont know if you can really organize a forum,(you can organize a blog) and I dont know if its a good idea to try to filter peoples thoughts, or the people themselves.
What I have thought that would be good is quick easy access to everyones blood tests, symptoms, accutane dosage, how long ago, and what they have been diagnosed with. This could fit in the profile and maybe go back and edit the first posts and just fill it with all your tests.

I think our strength is in our numbers, knowledge and good communication.

On 4/2/2017 at 5:18 AM, TrueJustice said:

Other than interacting with copper, do you think it's possible tane can somehow interact with amalgam fillings? i.e Mercury?

I had a single mercury filling that I've had since I was 10 or so. I got it removed 2 months ago, and replaced it with the composites they now apply instead. I feel good mentally for having removed something which I know is toxic, and I can now freely detoxify and use clay and stuff without being worried about *pulling* mercury from my month. However, I don't feel physically better. Mercury fillings are not good, but I highly doubt that they have any relation to Accutane. If you have one, just find some holistic dentistry place and have it removed. Contrary to Accutane, this is easily fixed.

-

I've read the vit C toxicity study. I can't be assed finding pro vit C sources, but everything i've read points to vit C being insanely useful, especially as we're pretty much the only mammal not to produce vit C. We depend on external vit C to help detoxify, and with how much crap we need to detoxify from, I can't picture vit C being bad for us. I'm talking 2-3g a day here. I don't know about 100g+ IV injections of vit C, haven't tried them, but vit C is super useful, if ONLY for collagen production; post Accutane skin needs it.

The whole methylfolate / folic acid / b12 subject is confusing to me. I don't fully grasp it. All I know is that my B12 has always been in the upper range in my blood test results (B12 518 pmol/L (ref 95-575)), from 2014 to today, so I've never bothered looking deeper into it. Educate me if I'm being naive please.

@tanedoutI've send him a message. We'll see what gives.

@WasherI forgot to specify I also take selenium and pink Himalayan salt. I've never felt the need to supplement B vitamins as I eat Paleo with plenty of meat. I've tried supplementing B1 and B6 in the past and I never cared for it. The first supplement I took, way before getting so deep down the rabbit hole, was B6, for seretonin production. A natural anti-depressant if you'd like. The doses were unhealthy though, so I stopped a couple years back. Niacin (B3) destroys me. Insane flushes. I've tried on many occasions. Doesn't seem to bring any improvement. I've looked into Boron before and I definitely find it interesting, especially for its T levels improvements. It's in my list, though I'm personally through trying to fix this naturally. I take enough supplements as it is.

@guitarman01Maybe buy Ketone strips and test it out for yourself over a few days? Do you eat carbs? Are you following a ketogenic diet? Many things impact ketone levels. It's likely dietary.

-

For those who are planning to get on TRT, here are the comments from a knowledgeable guy on my thread on the Buleltproof forums. Consider avoiding Androgel. I know it's not doing much for me at least:

Does anyone know what happened to Alanc on the anabolic page about accutane? Last post I remember him being on thyroid medication or something like that.

On 3/31/2017 at 4:52 PM, ehohel said:

Injections are a breeze. PIP for only like the first 2-3 injections. My test is just about starting to kick in now, I did front load so I'm currently trying to get my E2 dialed in. My only major complaint right now is the acne hit hard within the last few days.

Are you taking pregnenolone in addition? Been reading some really good things about it in higher doses (50-150mg daily), someone here using it alongside TRT and getting some good benefits. Someone else on the same thread saying it's improved sensitivity
 

Quote

Just wanted to share that after two weeks of adding Pregnenolone to my TRT I have had a notable increase in desire and sex drive.
I started out with 30mg a day in the morning but backed it down to 15 mg where I seem to feel better.
Also noticed erectile quality better

https://www.excelmale.com/showthread.php?7484-Pregnenolone-and-Libido

If we want our voices heard and really make an impact on encouraging more research, we need to make our voices heard. We need to fine a way to let anyone who was affected document what happened and what lingering side effects they are having.

Once you have that data, you can use it to leverage government, health and pharm industries.

24 minutes ago, MonsterDiesel said:

If we want our voices heard and really make an impact on encouraging more research, we need to make our voices heard. We need to fine a way to let anyone who was affected document what happened and what lingering side effects they are having.

Once you have that data, you can use it to leverage government, health and pharm industries.

Thank you for this. How do we get everyone to report their sides?
Is it sheer laziness or something else?
All I know is that by not reporting it we are letting the pharms win.

When a review of roaccutane was done in 2015 (UK) it seems not enough proof to warrant change.
So yet again, not enough people reporting sides led to a decision for the claims by a few to be ignored.
Once again I say 'strength in numbers!"
Would any of you outside of the UK be willing to report you sides directly in the UK if that were possible?
If I get a good response from you guys I will see if I can make arrangements for this to be done.

I guess most of you have seen the propecia questionnaire that all their new members are asked to fill out.
How do you think that would work for us and if we used theirs as a template what would we need to add of delete from it?

That's exactly what we need to come up with is a template. I personally would prefer a database of full journals and reports about dose, what happened, side effect list with descriptions, etc. Attach name, age on it and we send as many as those as we can. If we could get a group of representatives with everyone's signatures, strength in numbers...