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10 hours ago, Akos said:Hi @under_tow, how are you?
So I guess the answer is No (you dont know anyone)
Yes, Genereux made terrible assumptions. Let me gather the information you are asking for. I will try to find a moment next week and I will post.
@under_towWhat tests have you done to know VA overload was the issue?
Hi @fchawk
These are psychological issues. Do you think they are related to Accutane taken years ago?I have never had ED. But, if you get morning woods and you get erections but you cant keep them until ejaculation, it seems to me that the problem is not physical.
Why do you think ED is related to Accutane?
Have you consulted an urologist or a Sex Therapist? What did they tell you?
Akos - Seriously!! You need to do some research and until then you should keepyour opinions to yourself!
https://www.c-span.org/video/standalone/?174192-3/safety-accutane
https://www.govinfo.gov/content/pkg/CHRG-107hhrg85967/pdf/CHRG-107hhrg85967.pdf
https://www.google.com/search?
We need everyone to report their side effects and to raise awareness. Find out more by PM me and look to Dubya as he gives advice on how to report. We need to do this in order to get recognition and initiate research to find a cure. We must also stop this drug from being unnecessarily prescribed and not prescribed for un 18's at all!
What if you lost morning erections while taking Accutane and they never returned, even years later, and no physical or psychological diagnosis could explain it. What then Dr. @Akos?
I just wanted to follow up from my last post looking at a possible type of autoimmunity triggered by Accutane that could affect the nervous system. I noticed thisfrom an insurance website.
Im not talking about GBS specifically, but what's been looked at to treat a severe progressive form of neuropathy.
Some of these treatments are recognized on the CFS forums, and you even had someone on here treated with I believe IVIG through Mayobased on autoimmune antibodies post Accutane.
Obviously most of these drugs are pretty serious, But then you got that one probiotic on there surrounded by all these serious drugs.
http://www.aetna.com/cpb/medical/data/700_799/0732.html
Guillain-Barre Syndrome Treatments
Policy
Aetna considers any of the following therapies medically necessary for the treatment of Guillain-Barre syndrome (GBS):
- Intravenous immunoglobulin (IVIG) when criteria inCPB 0206 -Parenteral Immunoglobulinsare met.
- Outpatient pulmonary rehabilitation program when criteria listed inCPB 0032 - Pulmonary Rehabilitationare met.
- Plasmapheresis when criteria inCPB 0285 - Plasmapheresis/Plasma Exchange/Therapeutic Apheresisare met.
Aetna considers the use of any of the following therapies for the treatment of GBS experimental and investigational because their effectiveness for this indication has not been established (not an all-inclusive list).
- Alemtuzumab (CPB 0764 - Alemtuzumab (Campath))
- Amantadine
- Bifidobacterium infantis
- Brain-derived neurotrophic factor
- Cerebrospinal fluid filtration
- Corticosteroids
- Eculizumab
- Interferons (CPB 0404 - Interferons)
- Leukocyte trafficking inhibitors (e.g., efalizumab, etrolizumab, natalizumab and vedolizumab)
- Per-oral endoscopic myotomy (for the treatment of GBS-associated achalasia)
- Rituximab
- Sugammadex.
Background
Guillain-Barre syndrome (GBS) is an acquired acute peripheral neuropathy causing limb weakness that progresses over a period of days to weeks. It occurs with a median annual incidence of 1.3 cases per population of 100,000, with men being more frequently affected than women. The prognosis of GBS is generally favorable, but it is a serious disease with a mortality of about 10 % and approximately 20 % of patients are left with severe disability. Guillain-Barre syndrome is considered to be an autoimmune disease triggered by a preceding bacterial or viral infection. Campylobacter jejuni, cytomegalovirus, Epstein-Barr virus, and mycoplasma pneumoniae are commonly identified antecedent pathogens. It is a heterogeneous disorder representing at least 5 different entities -- 3 are predominantly motor; namely acute inflammatory demyelinating polyneuropathy (AIDP), acute motor sensory axonal neuropathy (AMSAN), and acute motor axonal neuropathy (AMAN); and the remaining 2 variants are Fisher syndrome, and acute panautonomic neuropathy (Lindenbaum et al, 2001; Kuwabara, 2004).
On 3/20/2019 at 9:03 AM, Dubya_B said:That was quite the bold move to try finasteride. There were probably 4-5 post-Accutane patients who posted recovery or improvement stories in this thread after fin, so it is a dangerously appealing treatment. I've thought about trying it myself, but can't bring myself to.
How much finasteride did you take and for how long? Did you notice any brief rebound improvement? Have you improved at all since stopping finasteride?
I took it a year ago now for about a month (BIG mistake). I think it was propecia, I took, and If I recall, I thought I was supposed to be taking 1 mg, but it was somly supposed to be a fraction of that (so its partially on me). I did have some brief improvements while on the drug, but homestly, things have only gotten far worse since.
Also, I have seen some improvement from taking out Dairy, and am experimenting woth going VA free as well.
On 2/18/2019 at 3:14 PM, TrueJustice said:Has anyone tried any of the suggestions in the Youtube video "Top 8 Tips For Reversing Accutane Side Effects"? If so, did it help?(apologies if this has been covered already)
Also, does anyone here, who has taken Accutane, have children? If so, do the children have issue with anxiety,depression or any other symptoms associated with the drug? I am just wondering if Accutane affects our cells; could any of the negative effects pass to the next generation. I suppose it is unlikely but I am curious.
I feel much better taking cod liver oil. I don't know why. I feel energy, I do lot of things... I'm worry, it contain lot of vitamin A which is supposed to be the cause of our problems.
Now I have no energy for living.
I think the brain is also beeing damaged. No emotions, no happyness, more lonelyness. There is another side effect of this "med" which is the worst of all. The social damage. The damage caused by brothers, father, mother thinking bad about you..because you dont have a job(he islazy), you dont have a wife (he must be gay), you dont haveenergy, because your feet are destroyeddue toarthritis, to travel with them(he isselfish and a bad person and dont want the familly to be happy all together) , or go to a restaurant with them, or eat diferentfood....
I'm thinking of cutting any kind of relation with my family, in the end they were who pussed me to take this poison. It is notthe family I want northe people I want to be surrounder.
On 3/25/2019 at 1:04 PM, Justdry said:It's been 8 years and it's worse than it was whilst on accutane.
I just can echo what Justdry says. Many years after Accutane the skin feels much worse whilst on it. That is the dangerous thing with this drug. You just can not know how you end up after the treatment.
8 hours ago, robertlove said:Does anyone else feel that exercising / dieting causes accutane to be released from fat cells?
What makes you think or feel, that accutane gets released from the fat cells? Can you elaborate on that?
6 hours ago, Roland1968 said:What makes you think or feel, that accutane gets released from the fat cells? Can you elaborate on that?
Exercise and sweating releases vitamin A / accutane from storage. Saunas and full body sun exposure are helpful.
23 hours ago, Calcified said:Are we storing rather than using vitamin A?
Accutane fills the liver and fat tissues, so any VA intake keeps all the VA and accutane stored away. Zero VA diet, starts the depletion.
12 hours ago, Roland1968 said:
I just can echo what Justdry says. Many years after Accutane the skin feels much worse whilst on it. That is the dangerous thing with this drug. You just can not know how you end up after the treatment.
What makes you think or feel, that accutane gets released from the fat cells? Can you elaborate on that?
I notice when I am burning fat by doing cardio and eating less carbs, my lips feel drier and I am more prone to getting eczema on my arms. My theory is that accutane is stored in fat cells, and when you burn off the fat, the accutane gets released into the blood stream.
Of the hundreds of supplements I've tried, pancreatic enzymes always make me feel better, every time. I feel more energized, libido goes up, mental clarity improves and I'm able to express what i'm thinking clearly.
I had an abdominal ultrasound yesterday to see if spot anything so I'll post those results. Im the same person that had the liver biopsy years ago but never followed up other than checking liver enzymes here and there.
The dose of the enzymes is too high and I get weird muscle aches but I can just cut the dose and see if that helps.
Does this mean there's something wrong with the pancreas? Maybe the internal dryness we have causes the system to be plugged up or obstructed?
On 3/28/2019 at 3:23 AM, robertlove said:I notice when I am burning fat by doing cardio and eating less carbs, my lips feel drier and I am more prone to getting eczema on my arms. My theory is that accutane is stored in fat cells, and when you burn off the fat, the accutane gets released into the blood stream.
Eating less carbs means you're storing less water so you dry up. Did keto and it killed me. Eating carbs like potatos helps a lot.
On 3/25/2019 at 12:44 AM, Dubya_B said:What if you lost morning erections while taking Accutane and they never returned, even years later, and no physical or psychological diagnosis could explain it. What then Dr. @Akos?
Hi @Dubya_B
I was just referring to Fchawks case. Im sorry about your ED.
Morning erections are irrelevant. If I have an erection during sleeping, is because Im having erotic dreams, but generally I have more interesting subjects to dream about. If someone wakes up with an erected penis every day, the first thing that I think of is that he is very aroused, and that the physiology of his penis works well. But there are professionals who study these things and who we could ask for their opinions.
On 3/25/2019 at 12:00 AM, hatetane said:Akos - Seriously!! You need to do some research and until then you should keepyour opinions to yourself!
@hatetaneWhere is that written? Forums exist precisely to allow user to share their opinions. I think we should all accept this rule.
Even if what you say was true, I think the links you posted dont invalidate my comments, which were referring only to fchawks case. Anyway, the important thing is that he is getting better.
Thank you for the links. For the moment, I only read the short one, this one https://www.ema.europa.eu/en/documents/psusa/isotretinoin-oral-formulations-cmdh-scientific-conclusions-grounds-variation-amendments-product/00010488/201611_en.pdf
Let me ask you a question. I dont understand well.It says that from 689 patients, 281 reported ED. Is this correct? 689 is the total of patients or am I getting something wrong? Because then it says that only unknown frequency was going to be added, so that is why I dont understand, because 40% of the patients is a high frequency, and is not unknown. How is this?
And, importantly, I guess that the data presented was during the treatment, and not after it. Otherwise, it would say so. I remember that Accutanes leaflet indicated that certain effects could be permanent. But these sexual effects mentioned in the document are seemingly not considered potentially permanent by the authors. So, if someone has for example long-term ED after the treatment, and thinks it was caused by the drug, this is still not accepted by this institution, right?
On 3/24/2019 at 6:19 PM, under_tow said:I am finally becoming well, so doing very good.
The original question was if you knew someone who had completely reversed Accutane's permanent effects by doing Genereuxs diet and be like before again (because, this is what happens when you eliminate the isotretinoin which is still in the body, isnt it?). Okay, you dont know anyone, but JustDry and you are getting better.
Its good that you are feeling well, but that doesnt mean it is because of a low-VA diet (and by the way, chicken has VA, and maybe RA, we dont know because nobody measures RA; Genereux doesnt eat chicken).
In another post you said you have strong seborrhea, and that is not generally an Accutane effect, unless the drug increased the size of your sebaceous glands. The most common is the reduction of glands, and this is the main effect of Accutane. That is how it reduces acne in the long-term, and almost everybody in this thread talks about dry skin. Justdry is a clear example of this.
How do you explain that a low-VA diet decreases your sebum but makes Justdrys skin less dry? It sounds utterly contradictory to me.
Also, you are mixing a lot of things. Strong seborrhea (which is not typical of Accutane, and it could be just your normal seborrhea which came back after the drug); yellow skin after taking a VA supplement (and not after Accutane); psychological issues like anxiety; fatigue, which means nothing unless you define it, and generally it is just lack of motivation, or bad sleeping.
What do you mean by flakiness? Like peeled skin? Whatever it is, it seems to be a consequence of the changes made by Accutane. If it didnt reduce your glands, it could have changed the quality of sebum (maybe there is a different flora), or made your skin thinner or somehow structurally different from before. But probably you should better ask a dermatologist, or someone else in this forum. (Do you have flakiness both in cold and hot weather?)
The current reduction of seborrhea could be a consequence of just being more relax and motivated, and having more self-assurance. Or some of the things you stop eating could be helping (could be anything, not just a couple of molecules found everywhere in nature).
On 3/24/2019 at 6:19 PM, under_tow said:The only real test to proof vitamin A overload is retinyl esters (this is not very easy to get done), or liver biopsies (to invasive). Retinol or RBP in blood is not useful.
So have you done the retinyl esters test or the liver biopsy? You are not answering my question, which is how you realized you have VA overload.
I think you should be more interested in doing a skin lipids analysis, which is where Genereux says the isotretinoin (or the traces of it) is.
Please, dont tell me that you know about VA overload just because you read Genereuxs books, because we close this thread right now. Genereux couldnt know if you have VA overload because he hasnt done any test, as self-sufficient as he is. After writing his books, he wasnt expected some Accutane victims to ask him if they can follow his diet. Yeah, yeah, why not? Try the diet. And then please report back to me.
I actually went on a Zero-VA diet for two months, when I was reading Genereux. But, as the pages went by, and then when I corresponded with him, I saw that there wasnt any clear reason to keep the diet. So I quit. I didnt notice anything, good or bad.
If I werent writing this, I would continue writing the other post I promise. But be patient.
On 3/31/2019 at 2:00 AM, Akos said:The original question was if you knew someone who had completely reversed Accutane's permanent effects by doing Genereuxs diet and be like before again (because, this is what happens when you eliminate the isotretinoin which is still in the body, isnt it?). Okay, you dont know anyone, but JustDry and you are getting better.
Its good that you are feeling well, but that doesnt mean it is because of a low-VA diet (and by the way, chicken has VA, and maybe RA, we dont know because nobody measures RA; Genereux doesnt eat chicken).
In another post you said you have strong seborrhea, and that is not generally an Accutane effect, unless the drug increased the size of your sebaceous glands. The most common is the reduction of glands, and this is the main effect of Accutane. That is how it reduces acne in the long-term, and almost everybody in this thread talks about dry skin. Justdry is a clear example of this.
How do you explain that a low-VA diet decreases your sebum but makes Justdrys skin less dry? It sounds utterly contradictory to me.
Also, you are mixing a lot of things. Strong seborrhea (which is not typical of Accutane, and it could be just your normal seborrhea which came back after the drug); yellow skin after taking a VA supplement (and not after Accutane); psychological issues like anxiety; fatigue, which means nothing unless you define it, and generally it is just lack of motivation, or bad sleeping.
What do you mean by flakiness? Like peeled skin? Whatever it is, it seems to be a consequence of the changes made by Accutane. If it didnt reduce your glands, it could have changed the quality of sebum (maybe there is a different flora), or made your skin thinner or somehow structurally different from before. But probably you should better ask a dermatologist, or someone else in this forum. (Do you have flakiness both in cold and hot weather?)
The current reduction of seborrhea could be a consequence of just being more relax and motivated, and having more self-assurance. Or some of the things you stop eating could be helping (could be anything, not just a couple of molecules found everywhere in nature).
So have you done the retinyl esters test or the liver biopsy? You are not answering my question, which is how you realized you have VA overload.
I think you should be more interested in doing a skin lipids analysis, which is where Genereux says the isotretinoin (or the traces of it) is.
Please, dont tell me that you know about VA overload just because you read Genereuxs books, because we close this thread right now. Genereux couldnt know if you have VA overload because he hasnt done any test, as self-sufficient as he is. After writing his books, he wasnt expected some Accutane victims to ask him if they can follow his diet. Yeah, yeah, why not? Try the diet. And then please report me back.
I actually went on a Zero-VA diet for two months, when I was reading Genereux. But, as the pages went by, and then when I corresponded with him, I saw that there wasnt any clear reason to keep the diet. So I quit. I didnt notice anything, good or bad.
If I werent writing this, I would continue writing the other post I promise. But be patient.
Again this is a theory and three of us are seeing results, one other joined me in PM. We will post are results, we are not at 6 months yet.
Everyone's body chemistry and mineral levels are different, the PAS symptoms are different for all, you make it sound like we will all have the same side effects.
You have done no tests either and report with authority that it is not VA overload, I look forward to your correspondence with Grant.
1-2 months is not enough, it takes 1-2years to deplete the VA from a normal western diet, this as been covered [removed]
So how have I realized that I have vitamin A overload, because been chasing these issues for a decade, every diet, every supp, every hormone, and nothing gives results like removing VA from the diet, quite simple.
Hey guys,
Ive been doing zero dairy/vitamin A for the last few weeks (as well as a few rounds of neuro feedback). Ive seen some pretty rapid improvement, including but not limited to
-Testosterone feels higher (I feel like I have my ego back, Im more interested in girls again, noticably since being at college only 2 weeks ago, like Id be down with dating)
-Its easier to feel turned on
-Im emotionallyresponding to music in a way I havent in years.
- Im feeling a clarity of mind that I havent had since maybe 2017.
-Social interactions seem to be coming easier.
however, this seems to come in waves. I also had countless problems with milk when I was younger as well, so cutting out dairy might be a HUGE part of it. It also seems like every diet people do with some success rate involves cutting out dairy, so I HIGHLY suggest it.
21 minutes ago, cnb30 said:Hey guys,
Ive been doing zero dairy/vitamin A for the last few weeks (as well as a few rounds of neuro feedback). Ive seen some pretty rapid improvement, including but not limited to
-Testosterone feels higher (I feel like I have my ego back, Im more interested in girls again, noticably since being at college only 2 weeks ago, like Id be down with dating)
-Its easier to feel turned on
-Im emotionallyresponding to music in a way I havent in years.
- Im feeling a clarity of mind that I havent had since maybe 2017.
-Social interactions seem to be coming easier.
however, this seems to come in waves. I also had countless problems with milk when I was younger as well, so cutting out dairy might be a HUGE part of it. It also seems like every diet people do with some success rate involves cutting out dairy, so I HIGHLY suggest it.
Would you say you are also reducing vitamin d intake?
7 hours ago, cnb30 said:Hey guys,
Ive been doing zero dairy/vitamin A for the last few weeks (as well as a few rounds of neuro feedback). Ive seen some pretty rapid improvement, including but not limited to
-Testosterone feels higher (I feel like I have my ego back, Im more interested in girls again, noticably since being at college only 2 weeks ago, like Id be down with dating)
-Its easier to feel turned on
-Im emotionallyresponding to music in a way I havent in years.
- Im feeling a clarity of mind that I havent had since maybe 2017.
-Social interactions seem to be coming easier.
however, this seems to come in waves. I also had countless problems with milk when I was younger as well, so cutting out dairy might be a HUGE part of it. It also seems like every diet people do with some success rate involves cutting out dairy, so I HIGHLY suggest it.
It's definitely in waves @cnb30-
My main focus is my skin and some days it starts to look great, like everything is healing, then it'll take a step back. It's definitely a detox process with ups and downs. Eventually the ups will be more than the downs as we recover.
My anxiety has started to lift - i've had anxiety and tension for the last 2 years, constantly clenching my jaw. However, the past week it has started to go. I've stopped clenching every second of the day and night, i feel way more relaxed all of a sudden. Nothing else in my life has changed to bring about that effect, only the zero/low vitamin A diet. Been going since Mid December now.