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23 hours ago, gold casio said:I've literally spent hundreds of hours at this point scouring the web for any positive outcomes following the years of suffering. I've been able to find a few, but if we could have a group effort, it would be that much better. I think a positive mental state is greatly overlooked when it comes to recovery. Please help, this would mean a lot.
Couldn't agree more with this, having a positive outlook is make or break I think. The lack of accutane recovery stories in particular is really daunting. I have no doubt they exist though. I guess they've just tried to move on and not posted about it.
Not sure about this yet. But every single antibody was above normal. Not by alot though.
You see it's also found in a percentage of the normal population.
Test Name In Range Out Of Range Reference Range Lab
CANDIDA ALBICANS AB TXC
(IGG,IGA,IGM)
C.ALBICANS IGG 1.3 H
C.ALBICANS IGA 1.4 H
C.ALBICANS IGM 1.1 H
REFERENCE RANGE: <1.0
INTERPRETIVE CRITERIA:
<1.0 Antibody not detected
> or = 1.0 Antibody detected
Systemic candidiasis is often characterized by
markedly elevated levels of IgG, IgA, and IgM
recognizing Candida. However, interpretation of
Candida antibody levels is complicated by
detection of antibodies in 20-30% of healthy
individuals, and blunted antibody responses in
immunocompromised patients at risk for systemic
candidiasis. Candida antibody results should be
considered within the context of clinical findings
and results from other relevant laboratory tests,
such as Candida antigen detection and/or culture.
This test was performed using a kit that has not
been cleared or approved by the FDA. The analytical
Hi everyone,
this thread is extra long already but I had to add my story to it.
Just turned 28 years old and its been the worse bday of my life. It was my third accutane course (only for a couple of pimples) and I took it for only 1,5 months. Ive been living HELL since 3 months. My face is first worse than ever and swells and is red. I am having the WORSE depression/suicidal thoughts/I feel I am going crazy/OCD/Anxiety/Panic attack... All my oft hurts, I dont recognize myself in the mirror. I was in psych 3 times, Drs want me to take SSRI and other stuff but i tried and as feeling worse.
I just feel like its a nightmare.
Along with 23andme (which i've looked at pretty extensively myself), one thing i'm curious about is if our genes could predict some of our microbiome composition and or vice versa.
Im actually more curious of this atm, which I plan to get the most comprehensive version of this test as soon as I have some more information.
[Edited link out]
- comprehensive access to your entire microbiome, including viruses and fungi
- Functional metagenomics information, such as insights into what key metabolites and vitamins your bacteria are synthesizing for you
- More comprehensive probiotic bacteria
- Downloadable raw data for every organism detected in your sample
Association between leptin gene rs7799039 polymorphism and lipid profile changes induced by isotretinoin treatment in acne patients
On 8/14/2018 at 6:36 AM, guitarman01 said:Along with 23andme (which i've looked at pretty extensively myself), one thing i'm curious about is if our genes could predict some of our microbiome composition and or vice versa.
Im actually more curious of this atm, which I plan to get the most comprehensive version of this test as soon as I have some more information.
[Edited link out]
- comprehensive access to your entire microbiome, including viruses and fungi
- Functional metagenomics information, such as insights into what key metabolites and vitamins your bacteria are synthesizing for you
- More comprehensive probiotic bacteria
- Downloadable raw data for every organism detected in your sample
Association between leptin gene rs7799039 polymorphism and lipid profile changes induced by isotretinoin treatment in acne patients
There's one very easy way to find out if many of us share this polymorphism. If you do have 23andMe data, please upload it and take part in the propeciahelp GWAS.
We all have our own hypothesis, or at least suspicion, of why we are experiencing seemingly permanent side effects from Accutane.The GWAS being discussed on propeciahelp will not be influenced by anyone's hypothesis or beliefs in what is causing our problems.
It is a simple as: 23andMe data in -> analysis -> unbiased answers
...And the data can be submitted anonymously.
This has to be the easiest and most low-cost thing each of us taking part in this conversation can do, compared to the hundreds or thousands many of us, myself included, have spent buying various testing kits, supplements and drugs while trying to fix this.
.
On 8/13/2018 at 6:56 PM, Dubya_B said:There's one very easy way to find out if many of us share this polymorphism. If you do have 23andMe data, please upload it and take part in the propeciahelp GWAS.
Yes. Easy enough to do if you already have the kit. if not 100 bucks for 23andme is a good investment.
Speaking of 100 bucks,
it would be nice to see someone else get this test I just posted if you think this could be "product ofyour environment" based as much as genetics. which i think it could be both.
Meaning what you consumed (Drug), altered your microbialenvironment.
Shifts that continue to go in the wrong direction.
It would be good to verify this isnt flagging with someone else.
if you have a nearby quest diagnostics, it will cost you 90 dollars through walkinlabs.
On 8/10/2018 at 1:27 PM, guitarman01 said:CANDIDA ALBICANS AB TXC
(IGG,IGA,IGM)
C.ALBICANS IGG 1.3 H
C.ALBICANS IGA 1.4 H
C.ALBICANS IGM 1.1 H
On 7/9/2016 at 4:46 PM, eph95 said:Every few months I come back to this thread to take a look and see how people are doing. And it's quite sad to see, but the majority of people are wasting their time and going the wrong way about it. If you want to cure your Isotretinoin side effects, it's actually quite simple. I see so many people, talking about different theories on how Isotretinoin causes negative side effects and health issues after ceasing the drug. I am quite shocked to see people are actually still talking about DHT levels and how this is one of the mechanisms by which Isotretinoin damages the body. There is also the copper theory, amongst many others. But everyone is wrong! People seem to over complicate things.
if you really want to cure your depression, suicidal thoughts, mood swings, erectile dysfunction, low libido, fatigue and all the rest then please. Don't listen to most people on this thread.
the key to repairing the chemotherapy damage from Isotretinoin. Is by addressing your gut. The way accutane causes all these health problems is because it is a very powerful agent, it wipes out all the bacteria in your gut (that's the good bacteria too). You need to replenish your healthy gut flora. There is a Reason why the gut is called "the second brain", it's because it produces 90% of the bodies serotonin. Isotretinoin also weakens the gut lining and causes cripplingcandidiasis. The only way to cure yourself is to take a combination of natural antifungals and probiotics . If anyone wants any more info then email me henthornedward@yahoo.co.uk
have a good day everyone and don't give up.
Cheers,
ed, Oxford,United Kingdom.
I still remember this post. sounds like BS right? is it?
Not to shift gears because submitting 23andme data is a good idea or no brainer,
but keep this in mind as well.
Hey everyone,
Long-time lurker on this site. Just made an account as I felt compelled to take part in this discussion about Accutane sides, and do whatever I can to help myself find some closure. Hopefully, I can help out the rest of you along the way with this 23andme project.
I have a plethora of questions, but for now, I'll ask only two.
1. What would be the best way to sift through the 600+ pages of information in this thread? Is there any way to speed this process up without missing important information? If need be, I have no problem making my way through each page individually.
2. Could someone possibly PM and explain the necessary steps in the 23andme process so that I might contribute what I can?
Cheers to everyone on this thread. Best wishes to us all.
To summarize the thread, you have to address each one of your side effects individually by ideally seeking medical help, and if that doesn't work, ultimately through trial and error (ex. Baxyl/Fish Oil for joints). There is no cure-all. Everyone is different. There is no point of origin.
Isotretinoin is a retinoid. It has the potential to alter ones phenotype systemically. The drug has genetic transcription capabilities.
Retinoids have many important functions throughout the body including roles in vision,[1]regulation of cell proliferation and differentiation, growth of bone tissue, immune function, and activation oftumor suppressor genes.
On 8/16/2018 at 2:59 AM, thesilentcartographer said:Hey everyone,
Long-time lurker on this site. Just made an account as I felt compelled to take part in this discussion about Accutane sides, and do whatever I can to help myself find some closure. Hopefully, I can help out the rest of you along the way with this 23andme project.
I have a plethora of questions, but for now, I'll ask only two.
1. What would be the best way to sift through the 600+ pages of information in this thread? Is there any way to speed this process up without missing important information? If need be, I have no problem making my way through each page individually.
2. Could someone possibly PM and explain the necessary steps in the 23andme process so that I might contribute what I can?
Cheers to everyone on this thread. Best wishes to us all.
Very difficult to navigate this thread with intent. It is the size of a long novel at this point, with constant overlaps in major topics being discussed. It also doesn't help that this site lacks advanced search options. Your best bet would probably be to browse-through until you find a general trend in the discussion that interests you.
Detailed instructions on participating in the 23andMe analysis can be found here [Edited link out]
Thanks, and best wishes to you too!
.
Suffered ED, low libido, depression and fogginess and pressure in the head a month after I finished my 60 mg course of 6 months. A month after getting these symptoms I went on Wellbutrin 300 mg daily, started working out more, drinking tons of water, started taking colustrum pills, ginseng + ginkgo biloba pills, and pine pollen pills. I feel totally normal now as I did pre accutane. Give this routine a couple months to see if it works for you as well. I will say, about 2 months after finishing accutane with great results, my acne did come back and I relapsed.
Hello!
After reading some parts of the thread, I just wanted to mention a couple things..
Has anyone considered the fact that people taking this drug before being fully developed (early 20s) can be a cause for some of these long-term issues?
Also, drinking 3-4L(6-8 500ml bottles) of water a day. Everyday. EVEN after you stopped taking the pills. Can you honestly say you did this?
I find it difficult sometimes to make sure I drink this amount of water...but when I do I feel great. All side effects get reduced, as far as Im concerned.
Sure taking supplements is good for you,
but a healthy diet goes much further (Im talking fruits, vegetables, lean and white meats and high fiber based carbs;ON A DAILY BASIS). All these supplements you are taking are found in many natural foods, hence where the supplement is derived from. Also not indulging in things like alcohol or high fats. I feel like these thigs will clog up your liver and dont let the accutanebe processed correctly or in a timely manner. Yes of course everyones body is different. But if you are willing to put something toxic into your body, you need to make sure that you are willing to do the hard work. Or, as its the case, suffer the long term consequences.
Water is definitely important and I take your point about eating a healthy diet but....
Take eye floaters for ex which many of us have post tane, is any amount of diet change or water consumption going to make them disappear? No
This I put under the term damage from Accutane. This is a simple example, I could go to the extreme end where people have had part of their colon removed due to Tane- this is a fact, would any amount of dietary changes resulted in preventing this from having to be done? No
Diet is important even if you dont take Accutane, but to overcome damage we need more than diet hence the studies that are taking place behind the scenes to work out what exactly happened after taking this drug.
18 hours ago, TrueJustice said:Water is definitely important and I take your point about eating a healthy diet but....
Take eye floaters for ex which many of us have post tane, is any amount of diet change or water consumption going to make them disappear? No
This I put under the term damage from Accutane. This is a simple example, I could go to the extreme end where people have had part of their colon removed due to Tane- this is a fact, would any amount of dietary changes resulted in preventing this from having to be done? No
Diet is important even if you don™t take Accutane, but to overcome damage we need more than diet hence the studies that are taking place behind the scenes to work out what exactly happened after taking this drug.
Well...I guess that answers the eye floaters I™ve experienced over the past decade.
My first post! 
Took accutane 13 years ago. Went into hospital 1 1/2 months after starting 60 mg per day regimen. Doctors said it was missed appendicitis. Turned out to be Crohn™s disease. Lost a foot of colon, cecum, and 6 ft of small intestine. Had an ileostomy for 1 1/2 years which was thankfully reversed. Pituitary Macro Adenoma 3 cm in diameter removed 8 years ago.
Still suffering with high anxiety and feelings of worthlessness. Thoughts of suicide still to this day.
Life sucks and would of pulled the plug long ago if it wasn™t for my two kids.
14 hours ago, PitTumorCrohns said:Well...I guess that answers the eye floaters I™ve experienced over the past decade.My first post!
Took accutane 13 years ago. Went into hospital 1 1/2 months after starting 60 mg per day regimen. Doctors said it was missed appendicitis. Turned out to be Crohn™s disease. Lost a foot of colon, cecum, and 6 ft of small intestine. Had an ileostomy for 1 1/2 years which was thankfully reversed. Pituitary Macro Adenoma 3 cm in diameter removed 8 years ago.
Still suffering with high anxiety and feelings of worthlessness. Thoughts of suicide still to this day.
Life sucks and would of pulled the plug long ago if it wasn™t for my two kids.
What symptoms did you have to investigate the pituitary??
What signs did you have regarding this?
sorry that you still suffer...
4 hours ago, TrueJustice said:What symptoms did you have to investigate the pituitary??What signs did you have regarding this?
sorry that you still suffer...
Main thing was that something didnt feel right. I didnt feel myself.
Hormones were very high or near zero - via Blood Requistion.MRI confirmed size of tumour.I had zero testosterone and zero libido too.
For people that are noticing facial features and bone growth changes, get your doctor to check IGF-1 to rule out Acromegaly.
I noticed skin tags on my face too which I have never had. They are nonexistent since pit tumour removal.
I slept 2-2 1/2 hours per night for the last few months prior to pituitary tumour removal. My sleep slowly got worse and worse. Went to a sleep clinic to test for sleep apnea, which they said I had with over 50 interrupted wakes during the night. Got fitted for a CPAP, but it ever worked cause I had the tumour preventing me from breathing properly.
Now I can get 6-8 hours, but I always wake several times during the night.
Mood was off, REALLY off. Bad mood, anger, short fused.
I lost weight after accutane...90 lbs. now back to normal weight somewhat. After pituitary tumour was removed the endocrinologist gave me hydrocortisone which got me overweight.
SHBG is high and off the charts presently. Endocrinologist gave me Testosterone, but I am trying natural route first. Naturopath wants me to heal my gut first. She also mentioned: phosphatidylcholine. A leading naturopath recommended this supplement to her during her research for those who suffer from accutane.
I felt better after tumour was removed. More like myself , but not near as I did prior to accutane.
I still suffer from severe fatigue and prefer to be lying down pretty much ALL of the time. However, I do go out. Vacations arent great when they happen and I spend most of the time in the hotel. Plus I also have to worry about going to the washroom due to the shortened intestinal tract.
Presently...
blood test results -
SHBG high.
Sodium, potassium, chloride and bicarbonate are high.
Saliva test results -
cortisol levels are reversed - low in morning and high at night
Urine test -
Low serotonin, low epinephrine, low norepinephrine, low phenethylamine(PEA)
high glycine.
6 hours ago, PitTumorCrohns said:Main thing was that something didnt feel right. I didnt feel myself.
Hormones were very high or near zero - via Blood Requistion.MRI confirmed size of tumour.I had zero testosterone and zero libido too.For people that are noticing facial features and bone growth changes, get your doctor to check IGF-1 to rule out Acromegaly.
I noticed skin tags on my face too which I have never had. They are nonexistent since pit tumour removal.
I slept 2-2 1/2 hours per night for the last few months prior to pituitary tumour removal. My sleep slowly got worse and worse. Went to a sleep clinic to test for sleep apnea, which they said I had with over 50 interrupted wakes during the night. Got fitted for a CPAP, but it ever worked cause I had the tumour preventing me from breathing properly.
Now I can get 6-8 hours, but I always wake several times during the night.
Mood was off, REALLY off. Bad mood, anger, short fused.
I lost weight after accutane...90 lbs. now back to normal weight somewhat. After pituitary tumour was removed the endocrinologist gave me hydrocortisone which got me overweight.
SHBG is high and off the charts presently. Endocrinologist gave me Testosterone, but I am trying natural route first. Naturopath wants me to heal my gut first. She also mentioned: phosphatidylcholine. A leading naturopath recommended this supplement to her during her research for those who suffer from accutane.
I felt better after tumour was removed. More like myself , but not near as I did prior to accutane.
I still suffer from severe fatigue and prefer to be lying down pretty much ALL of the time. However, I do go out. Vacations arent great when they happen and I spend most of the time in the hotel. Plus I also have to worry about going to the washroom due to the shortened intestinal tract.
Presently...
blood test results -
SHBG high.
Sodium, potassium, chloride and bicarbonate are high.Saliva test results -
cortisol levels are reversed - low in morning and high at nightUrine test -
Low serotonin, low epinephrine, low norepinephrine, low phenethylamine(PEA)high glycine.
Bloody hell....
how invasive was the surgery?
and how long did you spend in hospital?
youve explained the symptoms really well, sounds similar to me with sleep. Ive also had the sleep apnea test which was negative in the sense of true apnea, that doesnt mean I dont have other major sleep issues though....
sleep apnea is not the only sleep issue one can have - as evidenced by yourself with a tumour no less!!
Ill look into some of the other things too - namely a blood test for those bone changes, that feels all too familiar as well, although thankfully on and off with the pain and stiffness.
Thanks for the post - much appreciated
4 hours ago, TrueJustice said:Bloody hell....how invasive was the surgery?
and how long did you spend in hospital?
you™ve explained the symptoms really well, sounds similar to me with sleep. I™ve also had the sleep apnea test which was negative in the sense of true apnea, that doesn™t mean I don™t have other major sleep issues though....
sleep apnea is not the only sleep issue one can have - as evidenced by yourself with a tumour no less!!
I™ll look into some of the other things too - namely a blood test for those bone changes, that feels all too familiar as well, although thankfully on and off with the pain and stiffness.
Thanks for the post - much appreciated
The surgery was done by going through my nose - transsphenoidal. The 3 cm in diameter tumour œpeeled off nicely, as the neurosurgeon said. It took only a few hours and my wife claimed my snoring was gone when I awoke.
i was suppose to leave the hospital after 5 nights, but.... I got a cerebral spinal fluid leak which required a spinal tap between my 3rd and 4th vertebrae. I got bacterial meningitis and the worse f***ing headache you could imagine. I compare this to the world™s worse hangover, with a migraine times 100. It was painful and thankfully this covered up the pain from the spinal tap.
I then spent another month in the hospital.
Thanks for sharing @PitTumorCrohns
5 hours ago, Biggest Brother said:Thanks for sharing @PitTumorCrohns
Hey, no problem!
Im actually being a little selfish. I™m hoping others, sadly, have experienced some of the symptoms I encountered after taking accutane.
Hopefully no one, in the future, has anymore negative side effects from this horrible f***ing drug.
...this pharmaceutical company owes me my life back, owes a husband back to my wife, and a father back to my kids.
Pathetic!
2 hours ago, PitTumorCrohns said:Hey, no problem!Im actually being a little selfish. I™m hoping others, sadly, have experienced some of the symptoms I encountered after taking accutane.
Hopefully no one, in the future, has anymore negative side effects from this horrible f***ing drug.
...this pharmaceutical company owes me my life back, owes a husband back to my wife, and a father back to my kids.
Pathetic!
Yep, my thoughts too!!
Its not going to happen though, they™ll never take responsibility for the poison they™ve created.
Saw a New kinesiologist yesterday, he works super quick which is fine with me, said we need to work on adrenal system, he identified that my cells aren™t passing on the right amount of energy too - I™m always fatigued, he said you must work on things in the correct order to see improvements.
over the years I™ve chucked a heap of things at different issues like many of us do....we™re only human!!
He™s put me on Alpha Lipoic Acid supplement.....let™s see how I respond I guess.
On 9/4/2018 at 11:40 AM, TrueJustice said:Yep, my thoughts too!!
Its not going to happen though, theyll never take responsibility for the poison theyve created.
Saw a New kinesiologist yesterday, he works super quick which is fine with me, said we need to work on adrenal system, he identified that my cells arent passing on the right amount of energy too - Im always fatigued, he said you must work on things in the correct order to see improvements.
over the years Ive chucked a heap of things at different issues like many of us do....were only human!!Hes put me on Alpha Lipoic Acid supplement.....lets see how I respond I guess.
What was the dose?
my naturopath put me on something similar to this:
Mixed Tocopherols (100-300 IU-QD),
Phosphatidylcholine 1-2 grams QD, Taurine 2-3 grams TID before meals,
Vitamin K in mcg doses,
Vit C 1-3 grams in divided doses per day,
ALA 200-400 mg,
and a trace element formula with Mg, Cu, Zn etc (and Fe if anemic). Glutathione support.
General B-Vitamin support.
[Edited link out]
I want to heal my anxiety, OCD and fears. I am doing CBT/ERP presently.
After muscle testing he said my body is saying one capsule per day.
Took this morning. In reading up on ALP it says it helps with absorption of Vit C,E and glutathione, its been talked about on this forum before.....way back though...
Prob why I dont respond to just taking C and E by themselves
Again, he said crucial to do things in the correct order....Adrenal recovery has also been talked about a lot on this forum, as to what pages I couldnt say.
I think one of the guys was French, hes long gone now but he was adamant that Adrenals must be recovered.
If they are not addressed all sorts of other issues arise - everything from hormones shutting down to getting parasites etc etc....
Thats What Im told anyway
5 hours ago, TrueJustice said:Yep, my thoughts too!!Its not going to happen though, theyll never take responsibility for the poison theyve created.
Saw a New kinesiologist yesterday, he works super quick which is fine with me, said we need to work on adrenal system, he identified that my cells arent passing on the right amount of energy too - Im always fatigued, he said you must work on things in the correct order to see improvements.
over the years Ive chucked a heap of things at different issues like many of us do....were only human!!Hes put me on Alpha Lipoic Acid supplement.....lets see how I respond I guess.
I'm actually curious to know how the kinesiologist can help. We were going to explore that option, but right now i believe we may try something called patchakarma detox. Anyone ever hear of it?