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Hello all!
I've had my share of rather persistant side-effects from accutane, and for the sake of my mental health, I'd like to share my story with the people on this forum. Reading some of these stories has made me unusually nervous and anxious, and thus I'd like to open up a little to help myself (and possibly others).
I took accutane (Roaccutan, not a generic one) three years ago, with my dose being 30mg a day. During the treatment I got the usual side-effects, like dry eyes, dry lips and dry skin, which, while annoying, weren't in any way serious. After all, I was told that the side-effects should go away a couple of months after I have finished my course. Three months from starting accutane, a bit before my seventeenth birthday, I noticed an extremely strange thing about myself. During one afternoon, I nearly completely lost my desire to have sex, or anything related. In addition, I had difficulties keeping erections, the glans of my penis felt numb, and I couldn't feel almost anything if I tried to masturbate. Orgasms were nearly gone as well. I also experienced some sort of emotional bluntness, as I was unable to feel happiness or sadness like before.
I quit taking Roaccutan immediately after contacting my doctor, who said also that my symptoms were caused by something other than accutane. I went from doctor to doctor, trying to find help, and I did get some. While I didn't (at the time) regain much sexual function, I did manage to calm down, and continue "normal" life. I saw a psychiatrist for a while, and took a low dosage course of citalopram, which didn't help that much. 6 months after the start of my problems, I decided to see what happens if I forget about it and wait.
Now, three years after I started my course, I think I have regained some sexual function. Getting erections is much easier than before, and occasionally I can have surprisingly strong libido. My penis feels almost as numb as it did back then, but overall I have improved both in sensitivity and getting orgasms.
Personally I think that my problems are caused by accutane aggravating a hereditary vulnerability to depression. When I feel good, everything is manageable, but when I feel anxious or nervous about my future like now, my problems worsen. I am planning to see a doctor again soon, and try to get some help regarding my mental health, which I think has a significant role in all this. Reading the post by Antisexaccutane gave me hope that I can regain enough sexual function to enjoy sexual relationships in the future at least a little more.
I hope that everyone here can find help for their problems, both mental and physical ones!
I want to reiterate that it's very important we stay strong, and determined to beat this.
While in my sauna, I'll often repeat in my head 'I WILL get better. I WILL be healthy once more'.
It's a hard thing to prove, but there is a lot of evidence supporting that our minds can determine what happens in our bodies.
The more we stress, which of course can be difficult to avoid, the more nutrients we use up.
Therefore, the more likely we are to become deficient and then (I believe, after reading Never Fear Cancer Again) get further problems.
Maynerd, I googled gum grafting... Doesn't sound fun! But hey, what else is there? I won't be acting on that yet, but I do fear that it's evitable.
I'm only 21... I don't think you can do much to actually reverse the process.
I'm also doing all the right things in terms of dental hygiene.
I DO NOT want to lose my teeth!
The few that have some receding make those teeth look bad, and I spent 4000 on straight teeth!
My teeth are one of the few things I get compliments for.
That won't be the case if they all disappear.
On another topic, I had a normal poop today.
And woke up with an erection.
My, how open our little chats are.
Anyone stumbling across this by accident would think 'What the f!?'
It's nothing to jump up and down about, but it certainly puts my day in the right place to begin with.
I don't know what to read now.
Just finished the cancer book, and now I've started Andreas Moritz' book 'Timeless secrets of health and rejuvenation'.
It's meant to be good.
I have so many non-health/self-help related books though.. I might start the second Hunger Games book soon.
After 2 weeks of avoiding gluten, it didn't make a difference to me, however as it's a known irritatent, I will continue to avoid gluten most of the time.
Got sick of oatmeal in the morning, so now have a gluten-free chocolate balls one. Tasty!
My lunch is normally half a pack - a pack of sliced meat (not the really cheap shit) and I usually go for sweet cure pork loin.
I have this with some salad.
I'm trying not to spend much money at the moment because obviously I don't have income.
I think a lot of things we can do are free anyway.
Exercise. A good amount of sleep. Relaxation.
Next time my cock'n'bollocks aren't working, I'll try to think 'Don't worry about it. Do something else'.
Stress will just slow down any healing we may have.
Me and my girlfriend are working things out, so luckily I haven't lost something really important to my life.
Should have my meeting with the documentary guys in a couple of weeks, if not late next week.
I'll update you all on that.
It's a fairly nice day, so I think I'll have a walk.
I wish I could feel like this more. Other times I just don't seem to have the energy or willpower.
Best make the most of it, aye?
Stef
I was on accutane in 2003 and I am still recovering. I came across Stef on youtube where he said in one of his videos that he is still hanging around at the org, so I had to check it out and give my two cents.
A short recap of my situation:
My symptoms pretty much coincide with yours, whereas some have improved over time, I will tell you what helped later. I have tried and experimentet a lot.
Doctors in most cases were not able to help or contribure in any way, I will spare you the details... would be a different story. Unlike to your case my acne came back pretty fast after getting off of the drug and it became far worse actually. My skin lost its ability to rejuvenate altogether for a quite long period of time and I am talking about the whole upper body where the skin had simply dried up. I did not suffer from depression or anything the like, but my state of health was rapidly decreasing after getting of the drug. To this day my eyesight decreases steadily, I had to start wearing glasses shortly after getting of accutane. Besides the common sideeffects I suffered severe cartilage damage in my knees, which cut my career as a basketball player short. My knees have not and probably will never fully recover, exercises involving running are a no go for me.
As I mentioned, the drug did not cure me! Quite the opposite, as my health declined, my acne grew and at the same time I became extremely sensitive to stress and got tired and fatigued ever more quickly. My situation became so bad that in 2006 I realised that should I not be able to turn myself around I would soon be for a lack of a better word be "disabled". Some months after getting off the drug I also started passing gas, like all day nonstop, it was embarrassing and lasted until around 2006. This is when I went gluten free. In 2006/2007 I made the turnaround with juice fasting and liver flushes mainly, see tips below.
A friend of mine who initialy recommended the doc to me who put me on the drug went on two cycles of the drug and was never cured either. Instead this once very smart guy became extremely fatigued and started to suffer from paranoia. He had to quit his studies and has become unemployable. He recently tried suicide, because of an altercation he had with his dad about him not being able to start a real life and get a job. After the injuries he suffered from the suicide attempt he will probably never be the same again.
Now, coming to the positive part of the post: Focusing on the past does not help, we got to look forward and make the best of it.
Mentally I handle the repercussions from the drug by focusing on the positive experiences I have had because of the struggle. That is mainly, the things that I have learned, the route my life has taken because of it. I am not religious, but things happen for a reason, what does not kill you makes you stronger, this is what I try to live by.
Tips: Below some things which have really worked wonders for me.
1. Taking zinc-picolinate 50 mg per day, half an hour before bedtime, increases sex drive and sperm count, reduces inflammation
2. Taking magnesium and potassium citrate, be careful with potassium you got to know what you are doing otherwise you may suffer cardiac arrest
3. Drinking 2 to 3 freshly squeezed lemons in the morning on empty stomach
4. Gluten free diet, you will only experience the benefits if you go 100%, cheating every 2 or 3 weeks will do you no good.
5. No industrial sugar
6. Brazil nuts, I take those for selenium, they are better than any selenium supplement, eat about 50g per day
7. Sauna, the fitness club I go to has a sauna, try to go there 2 times a week for two to three sessions each 15 minutes + cool down
8. Liverflushing in combination with hydro colon theraphy: This is the most potent tip on the list, but unfortunately it is nothing you can simply incorporate in your daily routine like a lifestile change. The only times I have been completely normal again - no dry eyes, more energy, normal digestion, no dandruff, calmed my mind - was after 2-3 sessions of liverflushing in a row, each about 2 weeks apart. Unfortunately after about 3 month things start slowly going back to "normal" again. What happens is that the magnesium sulfate, which is also prescribed to people with a magnesium deficiency, stimulates all your organs, this is at least one reason it works. The green stones you flush out are certainly no liver stones, they are produced by the olive oil in combination with bile secreted from the gall bladders.
9. Rowing, it stimulates all your organs underneath you abs and helps digestion. It is like giving yourself a good massage.
10. juice/smoothy fasting, almost forgot it, don't starve yourself!!
11. fresh organic liquid colostrum, it works and helps a lot, but too expensive for me, at least here in Germany
12. red beets, avocado, papaya, raw foods
13. all the things you take commonly for a holistic treatment of IBS or the like, for example enzymes or detoxifiers help, cost a lot of money...
14. If you want to go a step further than gluten free, try to eliminate starchy foods (special carbohydrate diet), instead eat a diet high in protein, fats and fruits and veggies. It is called ketogenic diet, good for building muscle
I was never able to fit travel into my life. At least, not this particular work travel circuit. The location forced sleep deprivation. It appeared to be a nice apartment, but in reality was noisy in the morning, uncomfortable bed, poor light shielding. And I had to go every week. So I was either sick or recovering 90% of the time, just from that weekly sleep deprivation. Terrible.
Well that obligation is concluded and I won't be renewing it. So now I have every major stressor eliminated. I've just gotta get over the effects of the trip I took last weekend (the last one), and I'll be home free.
Lesson: Avoid sleep deprivation like the plague.
Lesson: Avoid sleep deprivation like the plague.
that would be number 15. I used to take ZMA and it would increase the quality of my sleep dramatically. Nowadays I just stick to taking magnesium and zinc while at the same time eating a lot of bananas for vitamin B6 and it does the trick
Welcome to 'Believe'.
Good to have you on board.
Speaking of 'On Board', I saw Titanic in 3D last night.
My favourite film of all time. Amazing.
I recently received an email on YouTube from someone telling me to try Hemp Seeds and Hemp Seed OIl.
It's helped some of their issues, including hair loss and headaches.
I'm sure we've mentioned it before at some point, but I've not tried it myself and it was cheap enough to buy so I've got some.
It seems to have some decent benefits, including hormonal balance.
[Edited link out]
I'll let you know if I notice anything.
Stay strong.
I've gotta get myself a job again!
It's weird being at home during the week when everyone else is at work/college
Stef
companies like to make money, why not have Roche develop a protocol to reverse the side effects of accutane, there is certainly money to be made...
What I forgot to ask yesterday:
Has anyone else around here low immunoglobulin A (IgA) and/or high copper levels since getting off the drug?
I know I did! I will dig up my results. I know that it was probably about 4 months after my Accutane poison. It's been about 4yrs ago. Thanks for your posts. By the way my bones & joints (knee also) were destroyed also in fact I ran 3 miles a day before Accutane that is just a dream now, what do you do for them?
Well, to let everyone know I have been keeping my sugar levels in check, however still loosing weight & muscle, they seem to think nothing of it and claim my diet is too extreme...I guess we will see. It really amazes me how many issues, diseases this drug gave me and I am still alive....
Jsmil - did you just have a blood test of the telemores? I am not sure if your going to get a bad answer since there is nothing to compare prior to Accutane. I believe in studies of Cancer pts that how they were tested before and then after.
Hope all is well w/ everyone 
Ok, here it is the in depth bio/physio analysis of Vitamin A for anyone interested. Sorry it's sideways and not the clearest read, if you download it you should be able to flip it right ways up. Interesting how it talks about how hypervitaminosis makes keratin less cohesive, creates increases in prostaglandin release which can be remedied by aspirin, and how it causes hypoprothrombinemia which can be relieved by supplemental vitamin K. Beware it mentions accutane without mentioning ill effects.
https://docs.google....k5Wak1rRW8/edit
Furthermore, I noticed about 15 floaters today so HA isn't a miracle but I feel better on it.
@Believe, it is probably because if there are cures it they will be just that, cures plural and not just one pill. Our bodies are dynamic systems so even though we took one thing we messed up a whole network which is why we should not expect a cure to come from one thing or overnight. And they won't have luck getting a multiple pills through the AMA. Dr. Mary Ruwart speaks of those difficulties as a former drug developer if you are interested. Oh and they can't patent organic compounds which is where our healing will come from.
Oh and stef I hear grafting is pretty bad when they transplant your own gums but a lot better if they use pig or some kind of foreign substance.
On 4/17/2012 at 10:22 AM, oli girl said:On 4/16/2012 at 3:41 PM, Believe said:What I forgot to ask yesterday:
Has anyone else around here low immunoglobulin A (IgA) and/or high copper levels since getting off the drug?
I know I did! I will dig up my results. I know that it was probably about 4 months after my Accutane poison. It's been about 4yrs ago. Thanks for your posts. By the way my bones & joints (knee also) were destroyed also in fact I ran 3 miles a day before Accutane that is just a dream now, what do you do for them?
Well, to let everyone know I have been keeping my sugar levels in check, however still loosing weight & muscle, they seem to think nothing of it and claim my diet is too extreme...I guess we will see. It really amazes me how many issues, diseases this drug gave me and I am still alive....
Jsmil - did you just have a blood test of the telemores? I am not sure if your going to get a bad answer since there is nothing to compare prior to Accutane. I believe in studies of Cancer pts that how they were tested before and then after.
Hope all is well w/ everyone [Edited image out]
Oli Girl, I've experienced most forms of self-induced starvation firsthand. Why don't you post your diet and I'll see if I can pinpoint the trouble.
Also, bone and joint trouble = supplement with K2, as another poster here just mentioned here. Butter oil works great. See Richard Nikoley's posts on Vit K2.
I just read a little more of what has been posted in this thread thus far and came to the conclusion that the people posting here lack the scientific background to understand the deeper workings and long term effects of the drug. That is why I would recommend having this thread cross posted at the wholistic forum here at the org, because this is the only forum where I have come across a whole bunch of users who have the expert knowledge in the field of biochemistry and medicine and who will understand the deeper workings, many of whom have already tried accutane and suffer from the side effects as well and could make a big contribution here.
Oli Girl - I haven't got the telomere test results back yet. Even today they are still having problems faxing over the results or something from the hospital to the doctor's surgery. But the results are in, just a case of when I'll get them! I even think the normal blood tests I only did last Thursday are already in, so I'll get those at the same time.
About comparing the results before and after, I don't think it's such a big deal. Yes it would be good, but this test, from what I'm led to believe, as I'm also led to believe it's been sent to Spain as this was mentioned in the phone call to my hospital (and Life Length are in Spain), and according to articles about bringing regular Life Length telomere tests to the UK, it says results should include biological age. As before I took Accutane I was healthy without problems, and looked my age (and no known family history of early declining health from what I know) there is no reason to believe I would of also been my biological age. So if I get my results back and this test says I'm much older then the actual age I am now, then that's good enough evidence for me. The results hopefully go into more detail, but until I get the results back, I can only speculate.
I just read a little more of what has been posted in this thread thus far and came to the conclusion that the people posting here lack the scientific background to understand the deeper workings and long term effects of the drug. That is why I would recommend having this thread cross posted at the wholistic forum here at the org, because this is the only forum where I have come across a whole bunch of users who have the expert knowledge in the field of biochemistry and medicine and who will understand the deeper workings, many of whom have already tried accutane and suffer from the side effects as well and could make a big contribution here
There is an in-depth science thread at AllThingsMale here: http://www.musclecha...ccutane-Thread/
But don't kid yourself. Science got us into this mess with the full sanction of the establishment. What got you into trouble is not likely to get you out.
What we need is the real basis of science - empirical observation of what works. Not endless theories based on some biochemical premise.
People are getting cured by things like meditation or just randomly, like 'drinking water and playing sports'. Which of course doesn't work for anyone consistently.
UPDATE on Proviron: It does not seem to work permanently, although there was a good correction for two people temporarily while taking it. Based on the reports, I think it's a step in the right direction. It did something useful for longer than the average supplement. But probably not worth buying unless it's convenient for you and you want to do a short term run with it to remember what it feels like to be normal for awhile.
The thing to remember is that most "science", isn't. Well above 80% of the top results in health are non-replicable (i.e., false). The vast majority of the mainstream health paradigm has not been tested by the establishment against superior alternatives like a focus on diet and paleo lifestyle. "Scientist" is used to describe professional experts who do very little science. A string of self-experiments that conforms to the scientific method is far more informative than a one-off unreplicated grant-funded study.
Also, I strongly suspect that the high percentage of introverts here means stronger susceptibility to Vit-A poisoning among those with Neanderthal genes, which would render gen-pop studies irrelevant to our situation. I already know introverts/neanderthals have different dietary needs.
Anyway, my theory for my personal regimine is stable now because my predictions closely match actual results. Missing sleep breaks me; getting sleep fixes me after 4-6 days, depending on how much I manage to eat; and neither cravings nor creeping malnutrition is a problem.
I would be suspicious of short term supplements or drug fixes, since they may work by revving the engine until a certain resource is exhausted. I did something like that with Red Bull, years ago, to use an extreme(ly stupid) example.
It's Wednesday morning after sleep deprivation Friday night, and the pall of illness has mostly passed. I am feeling amazingly unstressed, and am finally getting my life organized, which has been in disarray since I started that stupid weekly travel obligation.
The thing to remember is that most "science", isn't.
True, that.
high percentage of introverts here means stronger susceptibility to Vit-A poisoning among those with Neanderthal genes
That seems about right. Most people hit hardest seem to be ectomorphs as well. My thought on that is ectomorphs have fewer androgen receptors, presumably, so accutane destroying whatever portion of receptors it does hits us harder.
Joseph, the problem I have with your regimen is it is so much a coping mechanism. Accutane did deep structural damage. I simply don't see how you will ever be able to constantly manage forever. You will constantly crash. As you constantly report here you're 'cured' and then your very next post is your latest problems.
The mental energy drain on trying to live that way will be enormous, energy you would normally put to better use.
You might be suspicious of drugs, but I am more skeptical of why people think some herb or diet can really correct the equivalent of a nuke going off in the body - although I admit I once hoped for the same. I've tried more of that stuff than I can count or even remember.
It's not all useless, but it's not suitably corrective either. Including the f-ing scallops!
To the guy who says that accutane still stays in the body -
I finally went to a sauna the other day. I did three sets of 15ish minutes with water-only showers in between. It felt ridiculously good. When I was done I noticed that a few pimples on my face had dry peeling skin around and on them. The only times which i can recall that look was when I was on accutane...is it possible that the extreme sweating might have brought accutane to the surface?
To me that was convincing evidence
Lukez, I don't have a problem with anything you're saying, but let's play devil's advocate here for a second.
A nuke went off in your body. Fair analogy. Massive Vit-A overdose is basically a nuke.
So... a nuke went off in the American heartland. How do you clean it up?
There's no simple answer. It's not just about cleaning up the radiation, if that's even possible. "Coping," i.e. mitigating the damage BEFORE radiation cleanup is complete, is actually an integral part of the solution - in the short term, the mid term, and possibly even the long term.
Nuke cleanup would involve everybody being real careful about their rad exposure even from normal sources - analogous to what I'm doing with stress. And so on.
There's a temptation to just race for the "cure" and ignore the coping stuff as insignificant. But what if you have to cope first to cure second? What if you need to recruit your body's natural healing mechanisms over a period of years to rebuild telomeres or intestinal lining? That might require an extended period of coping PLUS regenerative therapies. The GAPS diet is an excellent example of how this gradual healing works for lots of people.
Don't get me wrong. If you guys find a 2 day magic bullet, I'm all for it. I'm just skeptical as to whether that's possible. I think your experimentation may yield false negatives for many helpful therapies because you're not doing everything possible on the coping front. So I don't view most of the "this didn't work" reports here as at all conclusive.
Anyway, I've had good weeks here and there, which is huge since off the therapy I NEVER had good weeks. My life was a miserable grey fog punctuated by pain. But I don't expect people to believe until I hit the 1 month symptom free milestone. I have one remaining travel obligation at the end of this month, so I expect to hit the milestone 1.7 months from now at the latest.
And yes, I've been imprecise in my use of "cure" to mean "found a coping strategy" and yes the phantom sleep deprivation variable had me very confused for a good while.
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Some posts got eaten when the site got hacked, including my last one. Believe quoted part of it. His post was eaten to. I'll reproduce what I have:
Believe wrote:
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------------ QUOTE ----------
Smoking, scallops micronutrient saturation, and super-clean eating give me intelligence, work ethic, and mood far superior to my pre-accutane state.
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This sentence made me laugh out loud, but I believe you. I have experimented a lot too. Caffeine is considered doping in sports and nicotine is under investigation, it will probably be put on the list of banned substances within the next years, because it is a stimulant a performance enhancer.
Sauna is real good. I usually do 3 sessions of 15 minutes as well, with rest in between, it works wonders if you do it regularly like twice a week or maybe three times a week. I would recommend it especially to those who suffer from dry skin and still have acne somewhere on their body.
I started a new thread over at the holistic forum.
There are a lot of people over there who tried accutane and ultimately ended up struggling to regain their health, who are now posting at the holistic forum. To my knowledge many are unknowingly and knowingly suffering from the accutane long term side effects. Maybe we can work together to develop a protocol that works for us. I believe the knowledge base over there is much better than here at the accutane forum that is why I started the thread in the holistic forum.
This is a really good article about nutrient deficiencies.
Here's my results:
deficient:
vit K2 - deficient. address asap. scallops has trace amounts, not nearly enough.
sufficient:
selenium - shrimp and scallops
B12 - scallops have lots
magnesium - scallops
selenium - scallops
iodine - scallops
As you can see, I wasn't exaggerating about scallops' power as a nutritional stopgap, but there is one chink in my armor. I've been thinking about K2 for a while now. It's really hard to get the animal form without fat, which is very dangerous for me. I will try natto mixed in with my rice cooker. should come by this weekend.
I can tell I have k2 deficiency because when you get enough, no plaque builds on your teeth if you're eating paleo.
Joseph, we will see about approaches! My main problem with the coping model is that I don't think healing occurs if the damage is extensive enough. There must be a re-modeling.
Couple questions for your diet:
You consider rice paleo?
What kind of rice do you use?
I'll look forward to your report on natto.
Just white rice. Doesn't matter what kind. I try to buy more expensive to hopefully get better soil richness, but that's it.
Rice is paleo. See Kurt Harris.
It's very low in micronutrients; basically it's just starch. But almost all paleo cultures eat starch - and put it on an equal footing with meat and fat. I.e., the highest tier.
So some paleo people don't like it because they want richer foods like sweet potatoes that are also starchy. But I need something hypoallergenic, so I go with rice.
So: Starch is paleo, and rice is acceptably paleo. It doesn't introduce neolithic agents of disease, The phytate thing is a non-issue. it's just not micronutrient packed.
As far as rice being agricultural, many hunter gatherer societies eat grass seeds, whcih is basically what rice is. And of course the shoreline dweller hypothesis states that we evolved in saltwater swamps, where marsh starches like rice or rice analogues would be accessible.
I think that's why rice is what they use to make hypoallergenic pill casings - we've been adapted to it or an analogue for a very long time.