Acne.org Products
Epigentic or not, the part I don't understand is why does the symptoms slowly get worse over time for a lot of people. Normal logic should be if you took 8 months of accutane, your symptoms should be at their worst during the regimen or immediately after. But, most people report the severity of their symptoms as creeping slowly over 1-2 years after they have already stopped the drug.
Tons of people are still getting nasty side effects even though they are eating super healthy, taking all kinds of supplements to flush their liver, and help their joints and GI.
Not sure if its Epigentic or annoy's argument of liver storage. Only thing we know is that Accutane is a very powerful drug. It has the ability to permanently change your body. 90% of the people that took accutane is cured of their Acne forever. The same thing for other Chemo drugs, it completely kills their cancer and it never comes back.
Only thing we can do is eat healthy and just continuously bathe our bodies with nutrients.
If accutane and other toxins are expelled, if the body return to a good state, those "epigenetic" change will be no more, the body will readapt itself. It's just that the body can't deal with all things at the same times. Epigenetic is a really bad excuse, i'm convinced of that, at least saying that it's permanent. If it was permanent, my neurological symptoms will be still here, but they are gone.
And epigenetic about accutane is just a theory, i don't even think that it can cause modification. I think accutane directly block some gene expression in certain part of the body but it's limited and doesn't do any modification. It affect the gene expression system in itself, not the mechanism who make a real modification or not (my opinion). If he was doing change, our body within 2 years will be completely malformated like babys who born after accutane, all trans retinoic acid regulate too much genes, if it was doing modification, we will be simply dead.
Isotherapy is homeopathy but with the exact same molecule who caused the problems. You can't do it yourself it's too dangerous.. ask an homeopathic lab. There is 1 or 2 who can do it in europe, don't know for usa.
Again, epigenetics, strictly defined, is about heritable changes in gene expression. What is being described here is any change in gene expression that can be induced by outside influences. They are not the same. Again, epigenetic changes are long term changes that are potentially heritable, and, as I pointed out above, most epigenetic changes are not passed on to offspring, certainly not to the point that they have a detectable effect on evolution. The rest is gene regulation, which is often transient but, depending on the process, can continue long term for as long as the stimulus causing the change in regulation is present. As is frequently pointed out, the quickest way to get an organ to start to return to normal is to stop doing the bad things to it that were causing it dysfunction in the first place. As P.Z. Myers put it:
In part, the root of the problem here is that were falling into an artificial dichotomy, that there is the gene as an enumerable, distinct character that can be plucked out and mapped as a fixed sequence of bits in a computer database, and there are all these messy cellular processes that affect what the gene does in the cell, and we try too hard to categorize these as separate. Its a lot like the nature-nurture controversy, where the real problem is that biology doesnt fall into these simple conceptual pigeonholes and we strain too hard to distinguish the indistinguishable. Grok the whole, people! You are the product of genes and cellular and environmental interactions.
Wrong only about 40 % are cured of pimples similar effect as using green tea lotion /COD or something to that order I still have mild acne same as I had before Accutane only difference is I have side effects to deal with. Not a good deal.
Recently went to my doctor and he suggested I try the RepairVite Leaky Gut Cleanse. I have decided to start it after Thanksgiving because it is 3-4 weeks of only natural meats, fruits, and vegetables. No sugars or grains.
I suffer from IBS and he claims that some people have significant improvement/ have been cleared of symptoms after doing this cleanse. My doctor himself has done the cleanse and speaks highly of it, and the nurse I talked to said she has seen great improvement after having done the cleanse as well. I am still skeptical that anything will help the problems I have, but this is the most promising thing I have heard in a while.
Here is the diet information/info on leaky guy syndrome:
[Edited link out]
Here is the supplement to take along with the diet:
[Edited link out]
My doctor also recommends taking a general probiotic during the cleanse, but it is not necessary.
Has anyone tried this before?
Recently went to a medical spa and they said the reason I was still getting acne was because my skin was too dehydrated from the accutane I took over 2 years ago still. They gave me some super moisturizers, and applied more lotion than I've ever had on my face before, and my skin was %100 clear.
Now everyday I use lotion up to 3 times a day, and definitely notice more acne if I forget to put on lotion. I also have been experimenting with using olive oil on my face at night, and it works wonderfully.
Everyone assumes that acne is caused by too much oil, but I think in some of our cases we have dried out our oil glands too much.
On 11/20/2013 at 8:22 AM, beans36 said:Recently went to my doctor and he suggested I try the RepairVite Leaky Gut Cleanse. I have decided to start it after Thanksgiving because it is 3-4 weeks of only natural meats, fruits, and vegetables. No sugars or grains.
I suffer from IBS and he claims that some people have significant improvement/ have been cleared of symptoms after doing this cleanse. My doctor himself has done the cleanse and speaks highly of it, and the nurse I talked to said she has seen great improvement after having done the cleanse as well. I am still skeptical that anything will help the problems I have, but this is the most promising thing I have heard in a while.
Here is the diet information/info on leaky guy syndrome:
[Edited link out]
Here is the supplement to take along with the diet:
[Edited link out]
My doctor also recommends taking a general probiotic during the cleanse, but it is not necessary.
Has anyone tried this before?
Recently went to a medical spa and they said the reason I was still getting acne was because my skin was too dehydrated from the accutane I took over 2 years ago still. They gave me some super moisturizers, and applied more lotion than I've ever had on my face before, and my skin was %100 clear.
Now everyday I use lotion up to 3 times a day, and definitely notice more acne if I forget to put on lotion. I also have been experimenting with using olive oil on my face at night, and it works wonderfully.
Everyone assumes that acne is caused by too much oil, but I think in some of our cases we have dried out our oil glands too much.
Gastrointestinal dysfunction is a factor in many modern diseases. Also, since Accutane has been shown to cause gastro problems (Ulcerative colitis, Crohn's, et al) it would behoove those who have taken the drug to repair and maintain an optimally functioning gastrointestinal tract, if only as a preventative measure.
Personally, I have been looking into the Clean Gut program, and I've gotten all of the supplements, but I've been too damn lazy lately to start the process!
Sorry guys haven't really been following this thread, having been posting on the accutane all things male thread, just have a few qns so please on answer if relevant [Edited image out]
The following qns relate to the methylation protocol...
Had anyone had their methionine or homocysteine levels tested?
Have you had elevated glucorticoid results such as cortisone or cortisol?
Has anyone had bone weakness or problems since accutane?
Has anyone had more than moderate success on b-vitamins, SAMe, 5-methyl-THF?
Anyone out there, particularly males who are suffering from sexual problems since taking accutane should check out the all things male forum!
On 11/20/2013 at 1:23 PM, Darran said:Sorry guys haven't really been following this thread, having been posting on the accutane all things male thread, just have a few qns so please on answer if relevant [Edited image out]
The following qns relate to the methylation protocol...
Had anyone had their methionine or homocysteine levels tested?
Have you had elevated glucorticoid results such as cortisone or cortisol?
Has anyone had bone weakness or problems since accutane?
Has anyone had more than moderate success on b-vitamins, SAMe, 5-methyl-THF?
Anyone out there, particularly males who are suffering from sexual problems since taking accutane should check out the all things male forum!
I have elevated cortisol level.
No succes with b vitamins so far.
Did u find something that may help with accutane side effects? If you did, please post here.
Thanks alot.
Epigenetic mechanisms do respond to the environment, and can be reversed naturally by certain factors, but not always. This is an incorrect assumption to make.
Many seemingly irreversible diseases have been linked to known or unknown environmental triggers, and often there is a genetic predisposition.
http://www.ncbi.nlm.nih.gov/pubmed/19833297
Epigenetic mechanisms such as DNA methylation and modifications to histone proteins regulate high-order DNA structure and gene expression. Aberrant epigenetic mechanisms are involved in the development of many diseases, including cancer. The neurological disorder most intensely studied with regard to epigenetic changes is Rett syndrome; patients with Rett syndrome have neurodevelopmental defects associated with mutations in MeCP2, which encodes the methyl CpG binding protein 2, that binds to methylated DNA. Other mental retardation disorders are also linked to the disruption of genes involved in epigenetic mechanisms; such disorders include alpha thalassaemia/mental retardation X-linked syndrome, Rubinstein-Taybi syndrome, and Coffin-Lowry syndrome. Moreover, aberrant DNA methylation and histone modification profiles of discrete DNA sequences, and those at a genome-wide level, have just begun to be described for neurodegenerative disorders such as Alzheimer's disease, Parkinson's disease, and Huntington's disease, and in other neurological disorders such as multiple sclerosis, epilepsy, and amyotrophic lateral sclerosis.
Take PTSD and schizophrenia into consideration also, as these are known have epigenetic components and can be triggered into adulthood.
Additionally, cellular differentiation is largely controlled by DNA methylation and DNA methylation is somewhat controlled by cellular differentiation. Environmental factors only go so far into explaining it. Certain cell types are programmed to have specific genes turned on or off, which actually determines how they function. From my understanding, this would be difficult to reverse if Accutane affected this system, but not necessarily impossible.
Something I find very interesting is the few recoveries resulting from water fasting. It has been shown in vitro, that if a cell is starved for long enough, it will begin shedding epigenetic tags and makes its way back towards pluripotency. I'm not sure if this has anything to do with the fasting recoveries since it would be difficult to accomplish the level of "starvation" as in the in-vitro experiments while still living, but it is something to think about.
I have completed a 7 day water fast, and a couple other sufferers have gone 21 and 28 days without remission of symptoms, so it is not a sure thing.
I have a friend of a friend who was left with ulcerative colitis, severe headaches, and arthritic symptoms that began shortly after a course of Accutane in high-school. She eats organic, makes a living from organic farming, and basically lives organic, but still suffers severe side effects. ...It only helps so much. I will try to get her on this board if I get a chance to speak with her again soon.
The sad fact of the matter is we really don't have a good understanding of what this drug did to us, leaving us with very little choice at the moment besides trying to live healthy and "poking and hoping" with different therapies, whether natural or pharmaceutical.
Question: if you're thinking about "shedding epigenetic tags," the only thing I can think of in the way of "poking and hoping" is taking demethylating agents with growth-inhibitory effects (cancer concerns). After all, the turning off of genes is simply done through methylation, and unless Accutane turned something on which it shouldn't have, it must have methylated (turned off) something which we can turn back on through demethylation. I don't mean to oversimplify or suggest that any damage done by environment can be reversed through environmental changes, but if Accutane (environment) methylated something inside of us that needs to be on, don't we need to just demethylate through environment (demethylation agents or other sources) to fix the issue? Not that that's a simple task, either, but would at least give real direction.
Epigenetic mechanisms do respond to the environment, and can be reversed naturally by certain factors, but not always. This is an incorrect assumption to make.
Many seemingly irreversible diseases have been linked to known or unknown environmental triggers, and often there is a genetic predisposition.
http://www.ncbi.nlm.nih.gov/pubmed/19833297
Epigenetic mechanisms such as DNA methylation and modifications to histone proteins regulate high-order DNA structure and gene expression. Aberrant epigenetic mechanisms are involved in the development of many diseases, including cancer. The neurological disorder most intensely studied with regard to epigenetic changes is Rett syndrome; patients with Rett syndrome have neurodevelopmental defects associated with mutations in MeCP2, which encodes the methyl CpG binding protein 2, that binds to methylated DNA. Other mental retardation disorders are also linked to the disruption of genes involved in epigenetic mechanisms; such disorders include alpha thalassaemia/mental retardation X-linked syndrome, Rubinstein-Taybi syndrome, and Coffin-Lowry syndrome. Moreover, aberrant DNA methylation and histone modification profiles of discrete DNA sequences, and those at a genome-wide level, have just begun to be described for neurodegenerative disorders such as Alzheimer's disease, Parkinson's disease, and Huntington's disease, and in other neurological disorders such as multiple sclerosis, epilepsy, and amyotrophic lateral sclerosis.
Take PTSD and schizophrenia into consideration also, as these are known have epigenetic components and can be triggered into adulthood.
Additionally, cellular differentiation is largely controlled by DNA methylation and DNA methylation is somewhat controlled by cellular differentiation. Environmental factors only go so far into explaining it. Certain cell types are programmed to have specific genes turned on or off, which actually determines how they function. From my understanding, this would be difficult to reverse if Accutane affected this system, but not necessarily impossible.
Something I find very interesting is the few recoveries resulting from water fasting. It has been shown in vitro, that if a cell is starved for long enough, it will begin shedding epigenetic tags and makes its way back towards pluripotency. I'm not sure if this has anything to do with the fasting recoveries since it would be difficult to accomplish the level of "starvation" as in the in-vitro experiments while still living, but it is something to think about.
I have completed a 7 day water fast, and a couple other sufferers have gone 21 and 28 days without remission of symptoms, so it is not a sure thing.
I have a friend of a friend who was left with ulcerative colitis, severe headaches, and arthritic symptoms that began shortly after a course of Accutane in high-school. She eats organic, makes a living from organic farming, and basically lives organic, but still suffers severe side effects. ...It only helps so much. I will try to get her on this board if I get a chance to speak with her again soon.
The sad fact of the matter is we really don't have a good understanding of what this drug did to us, leaving us with very little choice at the moment besides trying to live healthy and "poking and hoping" with different therapies, whether natural or pharmaceutical.
Question: if you're thinking about "shedding epigenetic tags," the only thing I can think of in the way of "poking and hoping" is taking demethylating agents with growth-inhibitory effects (cancer concerns). After all, the turning off of genes is simply done through methylation, and unless Accutane turned something on which it shouldn't have, it must have methylated (turned off) something which we can turn back on through demethylation. I don't mean to oversimplify or suggest that any damage done by environment can be reversed through environmental changes, but if Accutane (environment) methylated something inside of us that needs to be on, don't we need to just demethylate through environment (demethylation agents or other sources) to fix the issue? Not that that's a simple task, either, but would at least give real direction.
Aye, there's the rub. If we assume that Accutane altered gene expression and methylation, probably through an indirect path, then what what could undo the changes? An anit-Accutane pill? Also, since Accutane is chemotherapeutic, any treatment that reversed the changes would likely be carcinogenic. Personally, I'm treating with cigarettes (joking).
The changes caused in the body by Accutane are so myriad, and so varied across individuals, that it is near impossible to tell what specifically needs to be changed in order to cause a remission in symptoms. Since we can only speculate at the underlying etiology of the disease, the only reasonable way to proceed is to treat the symptoms as they arise. I'm still trying to understand the paper by Bodo Melnick, because it seems to give the most convincing explanation of Accutane's method of action.
But we still don't know if upregulation of Fox01 is directly caused by accutane or is only a consequence. It's certainly as always a consequence... So we still don't know (for sure) how accutane work.
I'm almost sure that everything reside in the intestine. The enteric nervous system is connected to every organs, intestine is the main detoxification organ, he's synthetising 75%+ of neurotransmitters too, it nourrish the body, etc..
Has anyone tried armour or any thyroid meds although the labs were good??
Has anyone tried iodine? did it make any difference?
I saw many accutane sufferers take up to 10.000 iu of vit. D3, as a supplement.
I took 10.000 iu just one day, and it dried me up like a desert, even my eyes felt too dry. Why's that?
Why do i feel some pain in the right lower rib? Because of liver damage, gallstones?
Did anyone else tried the water fasting lately?
One more thing..... i started to see white hairs in my mustache.....any ideea on that? premature aging?
Pls give me some answers. Thanks
But we still don't know if upregulation of Fox01 is directly caused by accutane or is only a consequence. It's certainly as always a consequence... So we still don't know (for sure) how accutane work.
I'm almost sure that everything reside in the intestine. The enteric nervous system is connected to every organs, intestine is the main detoxification organ, he's synthetising 75%+ of neurotransmitters too, it nourrish the body, etc..
True, we don't know for sure how it works. But:
"There is compelling evidence that retinoids alter the expression of FoxO transcription factors."
AND
"All isotretinoin-induced adverse effect on hepatic glucose and lipid metabolism, retinoid-induced dyslipoproteinemia, loss of bone density, myotoxic effects, mucocutaneous side effects, adverse psychiatric effects, chemopreventive effects and isotretinoin's teratogenicity appear to result from a common mechanism, i.e., FoxO-mediated changes of gene expression."
Still hard to understand the real causes and not only the consequence :/
Glucose is used to create glucuronic acid & udp glucuronic acid to expell the excess of vitamin A.
Anyway we can't do anything about this fox01 directly, and even if we could it will be symptomatic correction not true healing, it's kinda useless.
I stay on my theory on acidity, toxicity & intestine damage. All testimony of people who cured themselves of accutane was about fixing those problems.
Hmm, I just got a call from my doctor who said I have Lyme disease. Not sure what to do with that info. My symptoms do fit the bill for late stage Lyme disease, but I do not remember getting bit by a tick. Anyway, I have to look into it more, possibly get more tests, as I still do not trust the diagnosis.
Went to two different doctors, both suggested I get tested for Lyme Disease. Most doctors simply don't believe our symptoms are caused by Accutane. How I got Lymes Disease living in Washington DC is beyond me. How they still think it may be Lyme Disease after hearing this is beyond me.
They rather believe a person got tick bites while living in the city than believe Accutane is the true cause.
On 11/21/2013 at 9:01 AM, ChampionBlood said:Hmm, I just got a call from my doctor who said I have Lyme disease. Not sure what to do with that info. My symptoms do fit the bill for late stage Lyme disease, but I do not remember getting bit by a tick. Anyway, I have to look into it more, possibly get more tests, as I still do not trust the diagnosis.
There is a clinical test you can order from you doctor to determine if you have leaky gut. I'm thinking about getting one since Acctuane def damages the GI mucous membrane. Here is an excerpt on how the test is done:
Leaky gut is a clinical diagnosis, and while there's no specific test that can tell you with 100% certainty that you have it, a positive Intestinal Permeability Test is strongly associated with the condition. This test measures the ability of two non-metabolized sugar molecules mannitol and lactulose to get through the digestive lining.
Mannitol is a small molecule that normally passes through easily and serves as a marker of how well nutrients are being absorbed. Lactulose is a larger molecule that doesn't normally pass through very well and serves as a marker for whether there are large holes in the lining. To perform the test, the patient mixes pre-measured amounts of lactulose and mannitol and drinks it. The test measures the amount of lactulose and mannitol recovered in a 6-hour urine sample.
Low levels of both mannitol and lactulose indicate malabsorption. Elevated levels of both lactulose and mannitol suggest general increased intestinal permeability, consistent with leaky gut. Permeability to lactulose may be increased, suggesting leaky gut, while permeability to mannitol may be decreased, suggesting malabsorption of small molecules. The lactulose/mannitol ratio is a useful value; an elevated ratio indicates that the effective pore size of the gut lining has increased, allowing larger, possibly harmful molecules to gain access to the body.
On 11/20/2013 at 8:22 AM, beans36 said:Recently went to my doctor and he suggested I try the RepairVite Leaky Gut Cleanse. I have decided to start it after Thanksgiving because it is 3-4 weeks of only natural meats, fruits, and vegetables. No sugars or grains.
I suffer from IBS and he claims that some people have significant improvement/ have been cleared of symptoms after doing this cleanse. My doctor himself has done the cleanse and speaks highly of it, and the nurse I talked to said she has seen great improvement after having done the cleanse as well. I am still skeptical that anything will help the problems I have, but this is the most promising thing I have heard in a while.
Here is the diet information/info on leaky guy syndrome:
[Edited link out]
Here is the supplement to take along with the diet:
[Edited link out]
My doctor also recommends taking a general probiotic during the cleanse, but it is not necessary.
Has anyone tried this before?
Recently went to a medical spa and they said the reason I was still getting acne was because my skin was too dehydrated from the accutane I took over 2 years ago still. They gave me some super moisturizers, and applied more lotion than I've ever had on my face before, and my skin was %100 clear.
Now everyday I use lotion up to 3 times a day, and definitely notice more acne if I forget to put on lotion. I also have been experimenting with using olive oil on my face at night, and it works wonderfully.
Everyone assumes that acne is caused by too much oil, but I think in some of our cases we have dried out our oil glands too much.
On 11/21/2013 at 10:01 AM, JTM88 said:Went to two different doctors, both suggested I get tested for Lyme Disease. Most doctors simply don't believe our symptoms are caused by Accutane. How I got Lymes Disease living in Washington DC is beyond me. How they still think it may be Lyme Disease after hearing this is beyond me.
They rather believe a person got tick bites while living in the city than believe Accutane is the true cause.
On 11/21/2013 at 9:01 AM, ChampionBlood said:Hmm, I just got a call from my doctor who said I have Lyme disease. Not sure what to do with that info. My symptoms do fit the bill for late stage Lyme disease, but I do not remember getting bit by a tick. Anyway, I have to look into it more, possibly get more tests, as I still do not trust the diagnosis.
There is a clinical test you can order from you doctor to determine if you have leaky gut. I'm thinking about getting one since Acctuane def damages the GI mucous membrane. Here is an excerpt on how the test is done:
Leaky gut is a clinical diagnosis, and while there's no specific test that can tell you with 100% certainty that you have it, a positive Intestinal Permeability Test is strongly associated with the condition. This test measures the ability of two non-metabolized sugar molecules mannitol and lactulose to get through the digestive lining.
Mannitol is a small molecule that normally passes through easily and serves as a marker of how well nutrients are being absorbed. Lactulose is a larger molecule that doesn't normally pass through very well and serves as a marker for whether there are large holes in the lining. To perform the test, the patient mixes pre-measured amounts of lactulose and mannitol and drinks it. The test measures the amount of lactulose and mannitol recovered in a 6-hour urine sample.
Low levels of both mannitol and lactulose indicate malabsorption. Elevated levels of both lactulose and mannitol suggest general increased intestinal permeability, consistent with leaky gut. Permeability to lactulose may be increased, suggesting leaky gut, while permeability to mannitol may be decreased, suggesting malabsorption of small molecules. The lactulose/mannitol ratio is a useful value; an elevated ratio indicates that the effective pore size of the gut lining has increased, allowing larger, possibly harmful molecules to gain access to the body.
On 11/20/2013 at 8:22 AM, beans36 said:>Recently went to my doctor and he suggested I try the RepairVite Leaky Gut Cleanse. I have decided to start it after Thanksgiving because it is 3-4 weeks of only natural meats, fruits, and vegetables. No sugars or grains.
I suffer from IBS and he claims that some people have significant improvement/ have been cleared of symptoms after doing this cleanse. My doctor himself has done the cleanse and speaks highly of it, and the nurse I talked to said she has seen great improvement after having done the cleanse as well. I am still skeptical that anything will help the problems I have, but this is the most promising thing I have heard in a while.
Here is the diet information/info on leaky guy syndrome:
[Edited link out]
Here is the supplement to take along with the diet:
[Edited link out]
My doctor also recommends taking a general probiotic during the cleanse, but it is not necessary.
Has anyone tried this before?
Recently went to a medical spa and they said the reason I was still getting acne was because my skin was too dehydrated from the accutane I took over 2 years ago still. They gave me some super moisturizers, and applied more lotion than I've ever had on my face before, and my skin was %100 clear.
Now everyday I use lotion up to 3 times a day, and definitely notice more acne if I forget to put on lotion. I also have been experimenting with using olive oil on my face at night, and it works wonderfully.
Everyone assumes that acne is caused by too much oil, but I think in some of our cases we have dried out our oil glands too much.
Yeah, I live in a major city too. However, I happen to be a believer in Lyme Disease being an epidemic problem, especially in some areas (northeast). I have very nonspecific symptoms and Lyme is very hard to diagnose, especially where no tick bite is found. I sent my blood to a specialized lab and spent a boatload of cash out of pocket to have it tested. I got the results of the tests from my doctor via email, and most of the tests were negative for the disease, but one was positive. The doctor diagnosed Lyme and wanted me to take a further test and go on antibiotics.
I'm a very skeptical person by nature and I would have to have more solid proof before I would accept the diagnosis. I certainly don't want to hurt my body more with antibiotics, especially since I took them for years for acne and I feel they have decimated my gastrointestinal flora. However, this new variable makes me question a lot of things. JTM88, I strongly recommend that you get tested for Lyme, if only to rule that out as a possibility.
Tomorrow will mark 5yrs since all hell broke loose! The first year was the hardest I lost that whole year and barely left the house (I was lucky not to be hit with depression) I woke up that day with flu like symptoms, could barely walk, lost all muscle and fat ( most of my worst side effects came, like the drug was circulating or leaving my body and just attacked it) I was a walking skeleton. I had vibrations in my head, my face was beet red, hair falling out, severe dryness, leg jerking, palpitations, insomnia, hyper bowls that were not loose, nausea, body wide dryness, height loss and the list could go on........ I had numerous of tests and I mean numerous some were abnormal like iron, Vit D, dexa scan, and a few others, however the follow up tests came back normal.
Where I am I today, well In those five years I was dx with severe diseases. I am dependent on thyroid meds, insulin (type 1 diabetic as a adult) and from time to time plaquenil... Accutane caused bone loss, killed my pancreas and thyroid! I basically have sjrogren's!
I have tried and have done many things over these 5 years and still do many things for my autoimmune. I have tried flushes, fasts, diet (which I still do, not sure if I see any difference maybe more energy) supplements, saunas, exercise and the list could go on. I have succumb that life for me will never be the same since Accutane and I try to do the things I love and live day by day. Some are good and some not so much!
I truly believe that in some this sh*t changes DNA and those of us who can't tolerate Vit A at all have either some receptor issues, Vit A pathway issue or who knows maybe it is still hibernating in fat...I don't know for almost 2-3 yrs it drove me nuts and I gave up on that.
Robert- I would maybe try some iodine, but not armour if your levels are okay as you don't want to put yourself in a Hyper state. I have heard of some Victims having issues with Vit D, though I know 2 have Sarcodosis and that is bad for patients with that.
ChampionBlood - Though I am not a supporter of antibiotics, I do know a few victims of Accutane who have had to live on them to survive and have never had issues from them. They do take a probiotic. It is like their body harbor more bacteria since taking Accutane.
I know of some suffers who had success with SAM-E & D-Hist.... The talk about Methylation in which I believe Magnesium, Zinc ( which I can't take) b12, Glutathione, NAC and a few others, which are crucial. Have any of you had your homocystine checked?
If anyone wants to know all the testing I had some of it is posted here on the ragfourm. I also had 24hrs urinalysis, stool checks, more labs then I could even think of in fact I have a whole binder full lol! [Edited link out]
Hope everyone is doing well hang in there and hope you have wonderful holidays! [Edited link out] - Jen
Hey Champion, is there any way you can find the false-positive rate for that Lyme Disease test?
Might be a huge determining factor in how far you want to pursue that avenue. I entertained the idea for awhile considering where I live, but never had a bulls-eye rash and my symptoms didn't really match up except for fatigue and joint pain.
Oli, are you aware of any case studies of Sjourgens coinciding with isotretinoin treatment? It's my understanding that it is extremely rare for anyone besides old women to get the disease and there seem to be several on the Accutane forums who have mentioned having the clinical manifestation of Sjourgens.
On a side note, it's surprising more here with bowel problems haven't tried low-dose naltrexone. It seem to be a HUGE success in the IBD/Crohn's/UC communities. Check it out.
Hey Champion, is there any way you can find the false-positive rate for that Lyme Disease test?
Might be a huge determining factor in how far you want to pursue that avenue. I entertained the idea for awhile considering where I live, but never had a bulls-eye rash and my symptoms didn't really match up except for fatigue and joint pain.
Oli, are you aware of any case studies of Sjourgens coinciding with isotretinoin treatment? It's my understanding that it is extremely rare for anyone besides old women to get the disease and there seem to be several on the Accutane forums who have mentioned having the clinical manifestation of Sjourgens.
On a side note, it's surprising more here with bowel problems haven't tried low-dose naltrexone. It seem to be a HUGE success in the IBD/Crohn's/UC communities. Check it out.
My Lyme Disease results were:
IgM Western Blot: 41kDa+ (Negative Result)
IgG Western Blot: 41kDa+++, 39kDa IND (Negative, but barely so; equivocal)
Multiplex PCR: Plasmid Bb (POSITIVE, Confirmed by Southern Dot Blot)
So I only tested positive by 1 of 3 tests. The CDC states that:
"PCR assays detect DNA from dead or living organisms, do not demonstrate the presence of living organisms, and are prone to false positive results."
ALSO
"Positive PCR test results are analogous to a crime scene just because a robbery occurred and the robber left his DNA, it doesn' t mean that the robber is still in the house. Similarly, just because DNA fragments from an infection remain, it doesn' t mean the bacteria are alive or viable."
ALSO
"PCR positivity in seronegative patients suspected of having late manifestations of LB [Lyme Disease] most likely represents a false-positive result."
The thing is, I never got treated for Lyme Disease. So if there is DNA of Lyme bacteria in my blood, I must have been infected at some point in the past, assuming that the result is not a false positive.
Hey Champion, is there any way you can find the false-positive rate for that Lyme Disease test?
Might be a huge determining factor in how far you want to pursue that avenue. I entertained the idea for awhile considering where I live, but never had a bulls-eye rash and my symptoms didn't really match up except for fatigue and joint pain.
Oli, are you aware of any case studies of Sjourgens coinciding with isotretinoin treatment? It's my understanding that it is extremely rare for anyone besides old women to get the disease and there seem to be several on the Accutane forums who have mentioned having the clinical manifestation of Sjourgens.
On a side note, it's surprising more here with bowel problems haven't tried low-dose naltrexone. It seem to be a HUGE success in the IBD/Crohn's/UC communities. Check it out.
Dubya, do you have no comment/answer to my question? I know that a lot of it is hard to answer, as was pointed out by Champion, but you're the one who has disseminated all of this epigenetic material- do you not have a proposed direction to take based on the information or theoretical fix if the information is correct? I personally dislike carrying on endlessly about something, even proposing it's the best we have, and then not being able to say what that actually means for treatment/a cure.
Champion- just because the symptoms are widespread doesn't mean the cause isn't simple/potentially coming from one place. That being said, it will certainly take further digging to pinpoint it; however, just because something takes more effort doesn't mean I'm willing to abandon it.
Also, anonyy has spoken of LDN before a handful of times. I've tried to get my GP/Rheum to prescribe it, but both of them refused saying I'd have to go to a "pain doctor" for that.
oli girl, did you 100% stopped for more than 3month those foods: dairy, grains (even rice), animal products, legumes, soy, any kind of processed food, refined salt, refined sugar, any acidic food?. Did you eat a lot of fruits & vegetables/juiced vegetables & take herbs to help detoxification, and aloe vera, chlorophyll (juiced greens) etc.. to repair the intestine?
Hey Champion, is there any way you can find the false-positive rate for that Lyme Disease test?
Might be a huge determining factor in how far you want to pursue that avenue. I entertained the idea for awhile considering where I live, but never had a bulls-eye rash and my symptoms didn't really match up except for fatigue and joint pain.
Oli, are you aware of any case studies of Sjourgens coinciding with isotretinoin treatment? It's my understanding that it is extremely rare for anyone besides old women to get the disease and there seem to be several on the Accutane forums who have mentioned having the clinical manifestation of Sjourgens.
On a side note, it's surprising more here with bowel problems haven't tried low-dose naltrexone. It seem to be a HUGE success in the IBD/Crohn's/UC communities. Check it out.
Dubya, do you have no comment/answer to my question? I know that a lot of it is hard to answer, as was pointed out by Champion, but you're the one who has disseminated all of this epigenetic material- do you not have a proposed direction to take based on the information or theoretical fix if the information is correct? I personally dislike carrying on endlessly about something, even proposing it's the best we have, and then not being able to say what that actually means for treatment/a cure.
Champion- just because the symptoms are widespread doesn't mean the cause isn't simple/potentially coming from one place. That being said, it will certainly take further digging to pinpoint it; however, just because something takes more effort doesn't mean I'm willing to abandon it.
Also, anonyy has spoken of LDN before a handful of times. I've tried to get my GP/Rheum to prescribe it, but both of them refused saying I'd have to go to a "pain doctor" for that.
Dubya is not the only one proposing the epigenetic theory. Anybody who does serious research on the mechanism of action of the drug will likely come to the same conclusion. Oligirl posted the epigenetic paper a log time ago (I think on another forum). However, Dubya does seem to be the "expert" on the theory, if you want to single out one person. That being said, I'm sure if he had a simple answer, he would post it. For my part, I will say that I think fasting, a healthy diet, exercise, and possibly clearing your methylation cycle is a good start. Other than that, I would say treat the symptoms.
I doesn't find that epigenetic theory serious, we don't know anything serious and valided about it for now... The only thing that is close to it, is the supposed epigenetic effects of cocaine, heroin etc.. on the brain that go back to normal as soon as people stop the usage + time + detoxification.
I can say I too tried vitamin d on and off several different times.All things I have read seemed to state it should have numerous benefits to the body. even counteract vitamin a toxicity. I tried doses as little as 2000iu to as much as 10k iu per day. It did seem to have a drying effect on my body, most noticeable to my eyes that would become so dry they would become sensitive to office lighting, or the slightest wind outside would make them tear up. also experienced lower back pain while taking vitamin d and increased throat congestion. I read vitamin a and d can compete with each other. this again almost leans towards the theory that our whole vitamin a process is messed up (or creates a deficiency state)after taking accutane. thats why taking vitamin d would have a negative effect that a normal person would not experience.