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Hi guys and gals,
So I've been doing methylation protocol now for almost two full months. Symptoms are much improved, arthralgias and myalgias, sleep, mood, general well-being is improved. I can also tolerate caffeine much better (don't feel like I'm having a panic attack when I drink a cup/don't feel like I have to drink gallons of water to re-hydrate for example). While caffeine still effects sleep at night it's not nearly as bad. I've never been much for alcohol but when I indulge, same thing. I tolerate it much better. My body processes it, and I'm actually set the next day instead of being down and out for 2-3 days and only wanting to sleep. This to me is great news. My body is processing things. I still have food sensitivities however, which is strange. I still have candida and bacterial overgrowth. Going to try the copper route after I hear more long-term successes.
$cience is completely bankrupt treat one condition and create 5 new ones you never had with more synthetic drugs because it's what humanity really needs more $&@$ synthetic drugs if you want to learn how to TRUELY heal your body or even repair the long term side effects of isotretinon go to natural news .com.
Presumed Isotretinoin-Induced, Concomitant Autoimmune Thyroid Disease and Ocular Myasthenia Gravis: A Case Report
Autoimmune disorders may be triggered by oral isotretinoin treatment.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3531957/ not sure if this has been posted
59 minutes ago, guitarman01 said:Presumed Isotretinoin-Induced, Concomitant Autoimmune Thyroid Disease and Ocular Myasthenia Gravis: A Case Report
Autoimmune disorders may be triggered by oral isotretinoin treatment.sjnot sure if this has been posted
This would be correct! I actually suffer from 2 them thanks to Accutane. Graves (hyper thyroid and type 1 diabetes) I am almost certain you could add sjorgren's!
http://emedicine.medscape.com/article/1173756-clinical
I have seen quite a few post accutntane users talk about excessive sweating (hyperhidrosis)
How many of you are familiar or have seen others with absent or decreased sweating (hypohidrosis). Damages sweat glands does make a lot of sense.
(anhidrosis is the complete inability to sweat)
Exercise intolerance, facial flushing, tinnitus, burning pain, erectile dysfunction.
I have tried to find a good article to show you but it would probably be best to research articles yourself - if anyone finds an article that encompasses many accuatne side effects please post!
The other thing you guys should research , and the above is related, is Autonomic Neuropathy.
I have to research all this further but have to go to work now. Maybe some of you could take a look and let others know what you think.
Probably already been covered I am sure but damage sweat glands - bells ringing!!
https://en.wikipedia.org/wiki/Wilson%27s_disease#Diagnosis
In Wilson disease one has low ceruloplasmin and serum copper levels, yet copper accumlutaes in tissues (liver) and probably that's why it could give high copper in hair?
I saw you guys mentioned Wilson disease on page 335 and 337 but not that much.
In case of Wilson disease one should avoid copper and should remove excess of copper.
Hovewer low ceruloplasmin and serum levels could be caused by something different, so i think doctor should order some more tests in that direction?
@tryingtohelp2014did you consider this? What do you think? On page 337 you said that "If you had Wilsons disease... you wouldve known it loooooong ago. " but according to wikipedia first symtomps can occur between 10 and 40 years of age - so it can be undiagnosed for long time!
And also i would like to ask something on your theory about copper deficiency (maybe you have already explained that, but either i missed it or just didn't get it :))
Does copper theory assumes, that accutane causes copper deficiency in EVERYONE?
If yes, why only some of us have side effects? Copper deficiency can lead to infections and probably something like SIBO etc. which could be a problem here? But if copper stays low in everyone after accutane, wouldn't that mean that everybody will be sick in some time? Or maybe if you are lucky and don't get infection (yeast, sibo, whatever) during the accutate and some time after stopping, then your copper level comes back to normal, but if you get some (infection), it becomes an endless loop (copper deficiency -> infection -> copper deficiency...)?
BUT if accutane doesn't cause copper deficiency in everyone... What is the reason?
18 hours ago, macleod said:It's a very perverse industry. But, to their defense, the majority (85%) of people are able to tolerate this drug well enough. The problem with the FDA and the industry is, if the benefits outweigh the negatives, and going by a standard bell curve, they could give less of a shit. If treatment has gone well, they are behind you 100%. If something goes wrong, "piss off, we don't even know you, and are not Liable".That is what has to change. Responsibility. Accountability. Compassion. And at the very least, for the sake of science. That is worth fighting for.
And hey, if it causes sexual dysfunction, they make even more money selling you viagra. It's a win/win for them. Pharma has lost its heart. And unfortunately, I think for the most part, doctors are kept ignorant.
2 hours ago, matysek145 said:https://en.wikipedia.org/wiki/Wilson%27s_disease#Diagnosis
In Wilson disease one has low ceruloplasmin and serum copper levels, yet copper accumlutaes in tissues (liver) and probably that's why it could give high copper in hair?
I saw you guys mentioned Wilson disease on page 335 and 337 but not that much.
In case of Wilson disease one should avoid copper and should remove excess of copper.
Hovewer low ceruloplasmin and serum levels could be caused by something different, so i think doctor should order some more tests in that direction?@tryingtohelp2014 did you consider this? What do you think? On page 337 you said that "If you had Wilsons disease... you wouldve known it loooooong ago. " but according to wikipedia first symtomps can occur between 10 and 40 years of age - so it can be undiagnosed for long time!
And also i would like to ask something on your theory about copper deficiency (maybe you have already explained that, but either i missed it or just didn't get it :))
Does copper theory assumes, that accutane causes copper deficiency in EVERYONE?
If yes, why only some of us have side effects? Copper deficiency can lead to infections and probably something like SIBO etc. which could be a problem here? But if copper stays low in everyone after accutane, wouldn't that mean that everybody will be sick in some time? Or maybe if you are lucky and don't get infection (yeast, sibo, whatever) during the accutate and some time after stopping, then your copper level comes back to normal, but if you get some (infection), it becomes an endless loop (copper deficiency -> infection -> copper deficiency...)?
BUT if accutane doesn't cause copper deficiency in everyone... What is the reason?
YOU DO NOT HAVE WILSONS DISEASE! (1 in 30,000) geebus creepus. retinoids upregulate ATP7A.... this is the exact opposite of wilsons ATP7B. your low white blood cells almost certainly confirm a deficiency. Bobbydigital has the same values as us, and already did a urine test... he is deficient in that as well. get a 24 hr urine test if worried.
we all have one common bond here on this forum... we all took massive doses of RETINOIDS!!! hair analysis web pages have nothing to do with what we did. if accutane effluxes copper out of the cells and the liver, the hair would be a place for deposit like anywhere else. i would be shocked if it wasnt high in people doing a hair analysis right after completing treatment.
copper deficiency--->low stomach acid---->bacteria and pathogens easier to populate the small intestines--->SIBO/gut dysbosis---->malabsorption--->endless loop.
"BUT if accutane doesn't cause copper deficiency in everyone... What is the reason?"
some people mightve had higher stores to begin with, some people have a diet very high in copper... women due to estrogen, accumulate more copper naturally every month(this could be why women have a higher relapse rate.) could be as simple as genetics. some people never respond to accutane.
yes i believe accutane causes a copper deficiency in everyone with long term sides. if a few more people get tested and show low levels, even in a serum test that isnt the most reliable... the odds of this happening, and not being directly related is NIL. notice all of the levels that are being reported are just under the range...its almost shouting that we're not able to store it correctly, but are getting almost enough from our daily diet?! its almost like something in our liver is preventing this
read about this guy and neuropathy. he has been taking massive doses of iron.
http://sjogrensworld.org/forums/index.php?topic=25793.0
7 hours ago, hatetane said:http://emedicine.medscape.com/article/1173756-clinicalExercise intolerance, facial flushing, tinnitus, burning pain, erectile dysfunction.
I have tried to find a good article to show you but it would probably be best to research articles yourself - if anyone finds an article that encompasses many accuatne side effects please post!
The other thing you guys should research , and the above is related, is Autonomic Neuropathy.
I have to research all this further but have to go to work now. Maybe some of you could take a look and let others know what you think.Probably already been covered I am sure but damage sweat glands - bells ringing!!
good link about autonomic Neuropathy!
i developed a few of these post tane... specifically the inability to start urination/weak stream. i was convinced i had shy bladder , when i never had this before??? now i see the link between this and this from of neuropathy! i think a lot of people on this board have developed some type of neuropathy...and the longer people have been off the drug, the more progressive the symptoms.
I also sweat super easily... but i attribute this to the oil glands still being shut off, and TEWL. oil glands/sebum stop your body from losing water.
17 hours ago, MovingOnMusicGal said:Hi guys and gals,
So I've been doing methylation protocol now for almost two full months. Symptoms are much improved, arthralgias and myalgias, sleep, mood, general well-being is improved. I can also tolerate caffeine much better (don't feel like I'm having a panic attack when I drink a cup/don't feel like I have to drink gallons of water to re-hydrate for example). While caffeine still effects sleep at night it's not nearly as bad. I've never been much for alcohol but when I indulge, same thing. I tolerate it much better. My body processes it, and I'm actually set the next day instead of being down and out for 2-3 days and only wanting to sleep. This to me is great news. My body is processing things. I still have food sensitivities however, which is strange. I still have candida and bacterial overgrowth. Going to try the copper route after I hear more long-term successes.
Glad to hear you are improving. baby steps x
14 hours ago, oli girl said:15 hours ago, guitarman01 said:Presumed Isotretinoin-Induced, Concomitant Autoimmune Thyroid Disease and Ocular Myasthenia Gravis: A Case Report
Autoimmune disorders may be triggered by oral isotretinoin treatment.sjnot sure if this has been posted
This would be correct! I actually suffer from 2 them thanks to Accutane. Graves (hyper thyroid and type 1 diabetes) I am almost certain you could add sjorgren's!
Guitarman, thanks for posting this article. Have you got anymore like this. It is concrete and a good one to show doctors.
Please post or send me more like this.
7 hours ago, hatetane said:Guitarman, thanks for posting this article. Have you got anymore like this. It is concrete and a good one to show doctors.
Please post or send me more like this.
well there are alot of studies that show what can happen during accutane treatment. just none post treatment, thats always been the problem, why side effects persist.
So we've all got chemo brain issues post tane. It's fucked to admit but it really is the case I'd have to say.
So while I'm busy trying to do liver flushes and get some positive results from supplementing copper etc, I'm really stuffed cause I've got brain damage from accutane.
What the hell do we do to treat a chemo affected brain??
Well, that's what I'm working on. With the right chemicals we should be able to re-establish homeostasis in the glands in the brain and throughout the body.
3 hours ago, TrueJustice said:So we've all got chemo brain issues post tane. It's fucked to admit but it really is the case I'd have to say.
So while I'm busy trying to do liver flushes and get some positive results from supplementing copper etc, I'm really stuffed cause I've got brain damage from accutane.
What the hell do we do to treat a chemo affected brain??
Rick Simpson claim that cannabis oil do reverse chemo damage. Clean diet full of fruits And vegetables, curcumin, water fast etc can create new cells hence repair every damage. And since some did not have any damage from this drug it can't be that bad . Like Macleod said we have to re establish homeostasis :
The simplest accurate description of the effects of marijuana in humans is that it modulates the regulation of homeostasis.Homeostasis is whatGoldilocksseeks in thechildrens story: not too hot; not too cold; just right. More than just heat and cold, the human body contains many systems which must be held in relative balance. The balance between inhibition and excitation, bone formation and resorption, inflammatory/anti-inflammatory signalling, fat storage and release, blood sugar, blood pressure, hormone levels; all these systems are held in balance by theendocannabinoidsystem. This system, though involved in maintaining nearly every biological process in all humans, has only received scientific study for roughly the past 20 years, and it was discovered because its the site of action for marijuana.
Marijuana does not simply activate(agonise) this system. In addition to full cannabinoidagonists (chemicals which stimulate agonise; antonym: antagonise receptors), it also contains partial agonists, antagonists (Thomas, 2007), reuptake and transport inhibitors, enzyme modulators and much else besides, (Russo, 2011) including an assortment of terpenoids and flavinoids responsible for the odour of the flowers; how a marijuana strain smells indicates what mix of chemicals (all of which appear to be pharmacologically active in humans) are present, beyond the most famous two, neither of which have an odour: THC and CBD. The most studied receptors in the endocannabinoid system are called CB1 and CB2, both of which inhibit the other (Callen et al 2012), and both of which are stimulated by THC (a partial agonist at both and other sites) and antagonisedby CBD (Thomas et al, 2007). There are also believed to be numerous other receptors involved (Petrocellis, 2009), and their scientific study is yet only preliminary and largely speculative. Far from a single chemical with a single mode of action, marijuana has an entourage effect: many chemicals working together to produce effects not reducible to the action of only one or two of its constituents. One chemical it often contains in relatively large quantities, for example, iscaryophyllene, a selective fullCB2agonist which is also found in cloves, rosemary, hops and eucalyptus. Other plants which work on cannabinoidreceptorsinclude hot pepper and vanilla. Through their presence in the diet of some marijuana users, these (and other) plants participate inthe entourage effects of marijuana in modulating the regulation of homeostasis.
Summary:it rebalances almost every system in the bodythrough multiple inter-related effects which move in several directions at once and which compensate foreach others effects (confused yet?)
Thanks guitarman
6 hours ago, guitarman01 said:13 hours ago, hatetane said:Guitarman, thanks for posting this article. Have you got anymore like this. It is concrete and a good one to show doctors.
Please post or send me more like this.well there are alot of studies that show what can happen during accutane treatment. just none post treatment, thats always been the problem, why side effects persist.
Thanks. Has anybody got any good articles to show doctors. would really appreciate this as Ican't keep letting doctors fob us off!!
Hi guys, can someone tell me if there's any info out there on how long retinoic acid binds to a receptor for? Or even, how long vit A or D stay at the receptor. I read something about it being possible to recommend accutane patients to load up on vit A before their course to limit the amount of receptors available to the crappy retinoic acid version. I'm just curious how long that retinoic acid could remain at the receptor. Surely it can't be permanently there. Unless it's so crappy that it fools the body into thinking it has sufficient vitamin A but is unable to use the crappy retinoic acid, so you're stuck in a loop of your body not binding any normal vit A because retinoic acid is blocking the receptor?
Just wanted to know if anyone knows if the shit breaks down or leaves the receptor, or is it stuck there indefinitely.
Also, if anyone is interested, copper supplements seem to have drastically reduced the burning I was feeling in my joints. I still have the pain migrating everywhere, but waking up to 75% of my joints burning has subsided significantly. I still have the pain though, after standing for a while or being active, and I feel like it's affecting more joints, but I seem to wake with less pain.
Again though, anyone know how long Retinol/A/D stay at the receptors?
12 hours ago, ViceCaz said:Summary:it rebalances almost every system in the bodythrough multiple inter-related effects which move in several directions at once and which compensate foreach others effects (confused yet?)
ViceCaz, thanks for your explanation. I've been trying to understand how RSO could help as much as those cured by it say it does. I've read multiple accounts of cancer being cured by it and I marvel at how many diverse stories there are. I asked the helpful dude in the medical dispensary how it works, and he said, "It does a scrub and reset of the brain." So I guess in a word, homeostasis, right? Your explanation makes me think that it would not only help in the ED only cases, like my son, but the multiple-organ problems as well.
I'm hoping to come back with an encouraging update on how my son is doing, but we are still in the building tolerance stage. He already had to drop one class this semester (I think because of brain fog) and the RSO this soon in is making him pretty flakey. We're also having difficulty getting it in him every 8 hours for the same reason, also because he does have to drive to get to school. I'm hoping over spring break to get him up to the recommended dose.
Dietary selenium affects host selenoproteome expression by influencing the gut microbiota
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114522/
mice fed selenium diets modified their selenoproteome expression similar to control mice but showed higher levels and activity of glutathione peroxidase 1 and methionine-R-sulfoxide reductase 1 in the liver, suggesting partial sequestration of selenium by the gut microorganisms, limiting its availability for the host. These changes in the selenium status were independent of the levels of other trace elements. The data show that dietary selenium affects both composition of the intestinal microflora and colonization of the gastrointestinal tract
Se is an essential trace element that plays an important role in human health. In particular, it is required for biosynthesis of selenoproteins, which participate in the regulation of cellular redox homeostasis, protection from oxidative stress, immune response, cancer chemoprevention, and other processes
High Dose Selenium Significantly Improves My Fatigue and Brain Fog
I found that the improvements in fatigue and brain fog that selenium provides take a while to appear:it takes around 10 days of daily selenium supplementation before these improvements manifest. But these improvements begin to be noticeable by the 10 day stage. This amelioration in fatigue and brain fog is also maintained permanently, provided I continue to supplement with 400 mcg of selenium each day.
i could rattle off a bunch of other studies about skin pigmentation, hair loss, liver health, inflammation,immune response, muscle health, infertility, skin and nail health but im too lazy right now. happy friday people.
2 hours ago, Gladiatoro said:I cannot phantom how parents are putting healthy kids on toxic chemotherapy for of all things pimples one word WIOW . That really is the WOW factor in my books.
That's completely irresponsible might as well inject the kids with 20 or so toxic vaccines while your at it.
Well, in my defense (and in defense of the other Mum on here) I was told that the only side effects of Accutane were chapped lips and nosebleeds, both of which would not be an issue after the Accutane was over. So, Gladiatoro, our only crime was believing a doctor who had taken an oath to "first do no harm" and who supposedly had studied for years and had years of experience in safely curing people of skin problems. So before you lay on any more guilt, know that other Mum and I have spent many sleepless, distraught, tear-filled nights beating ourselves up over it. If I could go back in time, there's NO WAY I WOULD HAVE EVER SIGNED MY SON UP FOR THESE PROBLEMS. I'm guessing you've never been a parent, or you'd know that most parents love their kids more than life itself and don't intentionally do anything to hurt them. But a wiser person than me once said, you do the best you can with the information that you have. At least we're on here looking for answers.
I understand you were fooled by the allopathic system so was I , in reality it's all smoke and mirrors they have a MAGIC pill for everything with of course side effects .In reality there are NO magic pills . Accutane may get rid of acne and it may not but what is guaranteed is you will have side effects for the rest of your life some are hit harder than others it's a giant gamble with your health this drug should only be an option for people with severe cystic acne who have tried everything else first and not for people with mild to moderate acne. EVER.