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does NAC really cause damage?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by physicsstudent13, Sep 1, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    I've been taking 1800mg per day of NAC for about two years now. Inflammation and pain didn't get any worse after starting it. Pain stays under control with hydroxoB12 unless I over-use a muscle. Inflammation had started before I begun taking NAC as well, and did not get any worse.

    CPR has tested high, but that was only tested once, and quite recently. MCS and food sensitivities also started well before taking NAC - since these are common ME/CFS symptoms, it seems likely that they are simply part of the disease, unless we are to believe that almost all ME/CFS patients are using the same supplements? I have never had angular chelitis. IBS also seems unlikely - I get constipation, but that is probably due to upregulation of the ADRA2A gene after exertion, since taking an ADRA2A antagonist rectifies the problem completely. I have no acne type lesions or infected follicles. I don't have oral lesions. I also don't have numbness of any sort.

    So how is it that I'm taking so much NAC without any of the supposedly unavoidable side effects? And how is that AIDS patients in numerous studies using large doses of NAC for long periods of time never had those side effects? Those trials were not performed by drug companies, as there's little money to be made in peddling a supplement, hence it would seem that they can be trusted to accurately report adverse effects.
    Sushi likes this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Critterina has a good point. I think a lot of us would appreciate some scientific substantiation.

    And the flowery language tends to undermine your credibility when speaking about something which should be scientific.
    Sushi likes this.
  3. Freddd

    Freddd Senior Member

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    Hi Valentijn,

    So how is it that I'm taking so much NAC without any of the supposedly unavoidable side effects

    I had no idea about these unavoidable side effects. I didn't know they were unavoidable. I had always thought that they affect some small percentage of people. Who would have thought.
  4. Freddd

    Freddd Senior Member

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    Hi Valentijn,

    And the flowery language tends to undermine your credibility

    I've been accused of all sorts of things but never before have I been accused of "flowery language". It reminds of the time back in college that a group of elementary ed majors decided to warn the girl I was dating, a chemistry major and my future wife, that I was dangerous because I used "too many big words". Perhaps if you rose to the occasion and pumped out the violet prose you would have a daisy of an example. Oh well, keep the aspidistra flying.
  5. Dreambirdie

    Dreambirdie work in progress

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    I use NAC for toxic exposures. It works well for me. So does transdermal glutathione.
  6. ahmo

    ahmo Senior Member

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    Whey....I was taking whey, as well as ribose, 5HTP, and probably some other offenders I can't now remember, 5 years ago. I had no idea at that time that I had sulfur intolerance, although sometime around then I tried SAMe and my nervous system freaked out. Anyway, it ended up in a psychotic episode, known as 'a delusion' when it's a one-off event. As I became more over-excited I'd added a second sleeping agent to the low dose klonopin I'd been using. The psychiatrist shook his finger at me over the table in the in-pt. psych unit, demanding: "Didn't you know there was amphetamine in that sleeping pill?" WTF??? It illustrated how out of whack I'd been to not have carefully read the insert for the rx, nor did my GP ever aknowledge his error in prescribing. It was on Teitelbaum's list of sleeping meds. Beyond the fatigue, breathlessness, skin outbreaks, my worst symptoms have been CNS over-stimulation, irritability, reactiveness, agitation. I stopped all of those supps, have never tried any of them again. My past as a psych nurse ensured I was well treated, but the episode was deeply shocking. Indeed, we each have our very individual response to these different elements.
  7. Freddd

    Freddd Senior Member

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    Hi Valentijn,

    As you did, I had MCS for decades. As you did, I had a multitude of food sensitivities You had IBS-Constipation, I had IBS with constipation until I had my gall bladder out, then alternating. There is no need that everybody get all symptoms. There are 5 or 6 general levels of healing, and each of both kinds of b12 and folate triage distribution. One of the conditions you might have seen that everybody in that trial had already had success in healing with the active b12/folate protocol). So they had healed a whole lot.

    They had also unblocked methylation, un-trapped methyltrap and started up ATP. All 10 were hit hard, some faster and harder than others dependent upon form and dosage and individual differences or body sizes. All ten had healing partially reversed and return of old symptoms, the same ones by and large plus or minus a few. It does look a lot like you had a folate deficiency bout and since it was already going, it was no change at all for you. It didn't get you out of methyltrap.

    The Aids patients generally show large improvements in neurological functioning and other functioning when they get MeCbl and who knows what other supplements. Again, who would ever recognize folate deficiency as other than a result of AIDS. And besides, who knows if NAC by itself would continue excess glutathione generation. Many things like that are temporary results that end up exhausting the specific pathway.

    This is pure speculation. I was surprised as you hearing about "NAC detox". I went and chased it down. It was identical in every regard with "Glutathione Detox" which I had experienced when we did the glutathione trial. And of course it was easy to recognize as "old symptoms returned" for me. I knew folate deficiency symptoms so very well. And I would bet that you do to, if I were in your place.

    I may be correct to some degree or another, I may not be. It matters not the least to me what you choose to do so best of luck in solving your health problems.
    There plain speaking. No flowery language to waste ...?"
    Last edited by a moderator: Nov 22, 2013
  8. Valentijn

    Valentijn Activity Level: 3

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    In a previous post regarding inducing the supposed catastrophic effects you said:
    Which seems to imply that it effects pretty much everyone, instead of a tiny minority.

    Perhaps it would be good to clarify, when making these attacks of other supplements, that they only affect a small minority of patients at most, and that it is only in your personal and subjective experience?
    SOC, Sushi and celeste like this.
  9. Freddd

    Freddd Senior Member

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    Hi Valentijn,

    Perhaps it would be good to clarify, when making these attacks of other supplements

    And THAT is purely your conjecture or projection, that I am making an attack on any supplement(s). That is a very petty accusation which is not remotely true. That is you imagination or projection. This isn't a gossip fest. It certainly gives a window into your thoughts of attacking and being attacked. This isn't junior high school. This is a life and death matter for people like me and many others here, not about "liking" something or attacking what you don't like. I'm not 13 years old any more and I don't function like one either.

    that they only affect a small minority of patients at most,

    That is totally unknown. That is not a fact. At best it is a conjecture or wishful thinking of yourself. The mechanism hypothesized, that glutathione combines chemically with MeCbl and AdoCbl so it is not limited by ATP or enzymes. That hypothesis can be tested easily with injections of MeCbl and urine colorimetry. It can be demonstrated that glutathione causes many times more cobalamin to appear in the urine in the hours following administration than would otherwise occur. That is easily demonstrable 100% of the time. That has a presupposition too; that the persons in question have enough MeCbl/AdoCbl in their serum that it can be seen getting flushed out

    that it is only in your personal and subjective experience

    And somehow you desire to ignore the other 9 people who participated in the trial. All ten of us had similar changes and similar responses, to differing degrees just as might me expected. So while you may not agree, it goes way beyond "personal and subjective" in that it was planned in advance, there was a recruitment of volunteers who all hoped to get improvement in health and healing, we all started and ended at the same time. We had planned to go 3 months. We had to stop the trial at 6 weeks because it was getting too dangerous. It took additional months to stop the increasing damage and turn it around. That's what happens when trials go wrong. They are not taken to completion because of the severity of the damaging responses. The write-up you see is an attempt to make lemonade out of a total lemon. We set out to heal, not make Subacute Combined Degeneration worse, not come up with an experimental way to induce SACD.

    The 10 people involved were very specific 10 people. They all were successful with the Active B12/folate and had months at least of healing before trying the glutathione. I's difficult to be more specific. What that might imply to you is completely unknowable to me. I was quite surprised that 10 of 10 were so affected. However, they were 10 people carefully selected to have been successful with MeCbl, AdoCbl and L-methylfolate. You may infer whatever you want. To me 10 people are interesting but not nearly participants enough to infer much of anything. And then it only talks about the subgroup of those who were successfully healing, which certainly looks like a limited subgroup here.

    You know, it answered a lot of questions. It didn't ask or didn't answer any questions about people not healing through the use of active b12s and folates. It was narrowly focused on one small subgroup, the one I was most interested in, the subgroup that included me. What does it say about people who are not already healing? It doesn't consider them. However, in order for the symptoms to have a chance to show up, the people needed to not have the symptoms in the first place. So we used people who were substantially healed but had room for improvement since were looking for improvement, how to heal that last 10%. In that the trial was a total failure People have been discussing this one for the 5 years since it was done.

    If you would like to replicate it that would be interesting, if you can find some volunteers.

    Here you are getting upset because this study accidently shows you something you don't like. You think we set out to intentionally get damaged? This study went disastrously wrong. It was a total failure. Instead of the improved healing the glutathione proponents were sure of, all 10 of us were damaged, me to the greatest extent. Instead of showing how glutathione heals which is what we each wanted, it showed how damaging glutathione can be.

    If you walk away from it with the idea that glutathione might be dangerous, good. The DAMAGE I still carry from that is the price I paid to gather that information. You act as If I set out to get damaged to prove something. Suppose I had found something that was actually a profound healing agent. It sounds like you would be just as down on that.

    We choose the people we did so we could see the changes, either direction. People who are already at the bottom might not get worse. People at the top might not be able to show improvement. People with some improvement to loose and plenty of room for more improvement to occur is what we were shooting for. Unfortunately 100% of our results were on the damaging end of things rather than the desired healing. It was a fair setup. It could have gone either way. We were aiming for healing. We missed.

    This was damaging. It should be taken as a cautionary tale.
    Last edited: Nov 22, 2013
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Freddd

    It would help with clarity if, when you referred to "trials" you made it clear that you have been working with an informal groups, together trying a protocol--not formal trials set up by researchers and/or doctors. "Trial" is usually used in this formal sense which implies testing a protocol under certain guidelines, supplying before and after lab results....

    You have not given cohort definitions (are these patients diagnosed by the Canadian criteria for ME and, if not, what are they diagnosed with and how?) nor have you given supporting lab results, so members might have difficulty evaluating the results.

    Lab results seem critical when discussing the outcome of "trials."

    It would also help (particularly newcomers here) if you clearly differentiate between your hypotheses and personal experience and generally accepted medical knowledge. This gets confusing at times. :confused:

    Sushi
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  11. Freddd

    Freddd Senior Member

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    Hi Sushi,

    It would help with clarity if, when you referred to "trials" you made it clear that you have been working with an informal groups, together trying a protocol--not formal trials set up by researchers and/or doctors

    investigators initially enroll volunteers and/or patients into small pilot studies
    http://en.wikipedia.org/wiki/Clinical_trial

    This and a dozen and a half other trials are my original work. I choose items to research that would lead to my healing. It would seem very stupid to me to choose items for study that might produce interesting microscopic test results, require millions of dollars and not come up with a result useful for healing me and incidentally, maybe another millions and millions more in the USA. So I choose things that were either discernible directly, such as the symptoms patterns of going out of and then back into and then out of methyltrap. I did urine colorimetry, thousands of trials by injection and/or sublingual or oral of b12 from 1-100mg, with folic acid, l-methylfolate and glutathione as I had no other way I could afford to determine how much b12 was making it into the urine from the blood. I choose things that didn't require instruments I didn't have or couldn't afford. As HEALING was the number one criteria, it came down to how people's symptoms went. We learned how to turn methyltrap on and off. That has lots of symptoms

    And I could continue to list all sorts of definitions for "trials' from "time trials" "experimental trials" and so on. It doesn't take a doctor to run a trial. A typical high school swimming coach runs time trials all the time. I actually had two courses in college, experimental design 1 and experimental design 2. However, I have been in the business of collecting data and analyzing it since the late 70s. and collaborated in writing Group Health Care conference presentations. Now these were more likely to have a title such as THE EFFECTS OF PROVIDER COMPENSATION METHODS ON PRACTICE PATTERNS. Those on fraud detection methods were delivered behind locked doors and not distributed in written form or recorded. They were considered trade secrets.

    I organized this trial, a small pilot study, recruited participants, developed the protocol in cooperation with others so inclined, and performed it.

    supplying before and after lab results....

    Some trials use lab work, some don't. It certainly isn't a requirement unless you are looking for certain specific small things that can only be detected by lab test. In the group health care field we use secondary measures such as increased or decreased utilization of drugs, increased or decreased provider services, increased or decreased symptoms, changing symptoms, patterns of symptoms, rate of change of symptoms, rate of change of patterns of treatments, predictability, repeatability. We were looking for naked eye results. We were looking for the forest itself, not for the pine bark beetle in drought strained trees.

    Lab results seem critical when discussing the outcome of "trials."

    Limiting observation to lab tests in the entire b12/folate disaster got us 3 pseudo vitamins that leaves millions of us with undiagnosable b12 and folate deficiencies. NOBODY ever looked to see if people were actually getting well. They made sure that out blood cells were below 100 and cobalamin serum level >300pg/ml instead of "DID WE HEAL". Depending upon lab work only, threw the baby out and kept the bath water. It was all these assumptions about research that enabled b12 and folate researchers to be 100% CORRECT AT THE MICROSCOPIC LEVEL and leaves 100,000,000 of us in the USA with mysterious deficiency diseases, including you and me and everybody here. The only reason I had to do this is that the research community completely fell down on the job.

    You have not given cohort definitions (are these patients diagnosed by the Canadian criteria for ME and, if not, what are they diagnosed with and how?)

    100% of the cohort were those with at least 6 months of healing with MeCbl, AdoCbl and L-methylfolate. They had been sick and disabled and were at the time of the trial anywhere between 50 and 90% recovered of from their CFS/FMS, diagnosed in the USA or UK by their own doctors. I'm not sure that when we started planning this 6 years ago that the Canadian ME definition even existed yet. In any case nobody from Canada participated.


    generally accepted medical knowledge

    So, "generally accepted medical knowledge" has failed me for the past 65 years. If it were correct these diseases would be as rare they were in 1950. We are all here in spite of or because of " generally accepted medical knowledge". Many of us are here because folic acid and/or CyCbl/HyCbl made us sick or at least were not able to prevent b12 deficincy or folate deficiency. Whatever the effective treatment turns out to be for CFS/FMS it is going to be against "generally accepted medical knowledge", as of NOW. That changes every year. I couldn't afford to wait another 100 years, or even 5 years. Ten more years has made no difference. I had been waiting for MeCbl/AdoCbl to take over since 1978 when I learned that the real things had been discovered in 1959. By 2003 I couldn't wait any longer for any mysterious researcher it get it right. They still haven't. I'd have died by 2004 or 2005. It wasn't generally accepted medical knowledge that got me here alive and well.
    Last edited: Nov 22, 2013
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  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Freddd

    My point was not to debate the effectiveness of generally accepted medical knowledge, just to identify theories as, well, theories--so as to be clear.

    And also not to question the results of your trials, just to clarify their nature, so that readers do not mistake them for other types of trials. I also don't debate the value of anecdotal evidence--sometimes that is all we have. We just need to identify it as such.

    Sushi
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  13. physicsstudent13

    physicsstudent13 Senior Member

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    there was a rat study that says NAC causes thickening of the heart walls and narrowed lung airways. does it really help remove toxins from your body or only help if you have acute tyenol poisoning?
  14. Valentijn

    Valentijn Activity Level: 3

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    The only harmful studies I recall (and only in rats), involved something like 10x the maximum recommended dose per kg used in humans. There's been several long term studies in human AIDS patients showing basically no adverse effects from it. Of course, it should be avoided if you're prone to getting cysteine-based kidney stones, but that would be apparent before starting it.

    I don't know about toxin removal. I take NAC to sleep, and consider it a bonus that it's increasing glutathione in the process :D
  15. stridor

    stridor Senior Member

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    There was a time when the science behind an idea was important to me. I needed to agree with the theory behind anything I tried. This was not as fruitful as one might expect. My NAC/glutathione theory for the treatment of Bipolar Disorder, while an important step, was not curative like I had proposed. The SAMe experiment to provide needed methyl groups (before I came here) was a disaster. There are many other dead-ends and last year I gave away $1000 worth of supplements and threw out more.

    I believe that I can never entirely wrap my mind around the science of methylation and mitochondria. And it seems to me that things are not clear-cut among experts in the field either - people who have given over their entire professional lives to the understanding of these things. I just want to get better.

    Because of this I have reverted to a previous maxim. This is the one that I used when super-fogged and trying to understand mercury toxicity. It goes like this, "When you have a problem that needs to be solved, find the smartest person who has had success dealing with the same problem and then do what they did". This is how I ended up following the Cutler Protocol for mercury and why I have listened to Freddd's ideas concerning methylation.

    Unrelated but important. When reading emails, listening to advice, coming to boards like this, I am not easily offended by what others communicate and this is because I always ask what was intended - was the person trying to be helpful or ruin my day? Invariably, while sometimes clumsy, I have found that people are trying to help, in their way, and I have found a way to appreciate that. brad
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  16. Crux

    Crux Senior Member

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    I think that since supplements have so many properties, and exert so many actions, they can be both beneficial to some, and cause side effects to others.

    I understand how frustrating this can be, especially after researching, testing, and the likes. This keeps happening to me too; it blows me down for a time.

    So, sometimes I try to find out why, because maybe it will lead to another clue to healing, or at least some relief, if only temporary.

    NAC has many properties, one being that of a chelator. It's a milder one compared to EDTA, etc., but it can chelate cobalt, for instance. My guess is that people with low cobalt and low B12 may have side effects from NAC for this reason.

    It looks like glutathione may also have some of these chelating properties.

    http://emedicine.medscape.com/article/814960-overview

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922724/

    http://www.ncbi.nlm.nih.gov/pubmed/2839877
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  17. maryb

    maryb Senior Member

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    @Crux
    this makes sense of it for me - I had a mouthful of amalgams when I last tried NAC - god I thought I was dying.
    I may try it again once I have them all out but in the meantime no wayyyyyy.
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  18. physicsstudent13

    physicsstudent13 Senior Member

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    oh right NAC is supposed to lower AST/ALT levels in chemotherapy cancer patients. I think it may have saved my liver from damage after my surgery. I ordered the EDTA powder from purebulk and take a teaspoon a day, but I'm not sure about the dosage and kidney safety. I found a medical doctor who does do the IV treatments.
    so does the Cutler protocol help, what does it do? I am taking clomid and testosterone for exhaustion and cognition, but the testosterone may cause shutdown and atrophy.
  19. Freddd

    Freddd Senior Member

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    Hi Sushi,

    I got much deeper into b12 and folate than I ever intended. I thought it would be quick and simple Little did I know. You know Sushi, the glutathione in a way is my only failure in all this. It also is the only one that didn't reach my usual standard for inclusion. But it was needed to untangle the paradoxical folate Insufficiency. I speculated that it might be a good thing but it never proved out.

    Many things were technical, such as how much room light exposure to ruin injectable MeCbl, how much difference folic acid , folinic acid and l-methylfolate and glutathione made in cobalamin excretion, and how much of what kinds of dosing equaled each other via urine colorimetry. It was a lot of foundational work critical for those needing certain types of therapy. Most of the last 5 years has been untangling the array of side effects, induced deficiencies and the like and actually tracking the clinical pathways to healing. Nobody at all is asking that question.

    I've got it up to the "I bet my life on it" level. I also have it up to the "I can guarantee a percentage of healing that will be reflected in decreased utilization." if offered as a system to an insurance health co-op or whatever.

    And also not to question the results of your trials, just to clarify their nature, so that readers do not mistake them for other types of trials. I also don't debate the value of anecdotal evidence--sometimes that is all we have. We just need to identify it as such.

    I consider it very important that people know what kind of trials they are. People need to know it isn't the same warmed over research on a Nobel Prize lab mistake that went undiscovered for 11 years and largely ignored for the past 53 years. As a whole the industry is fighting against this as hard as they did hand washing. These are trials that directly ask questions that actually relate directly to our healing, not in maintaining us indefinitely in an ill state, chronically ill but manageable, by far the most profitable.

    Half of the secret of getting useful answers is asking the right questions. The first trial I ran was in 1979-81, taking 100 350 grain desiccated liver tablets daily for 2 years and did indeed find out that liver had what I would call today, all 4 components of the deadlock quartet, just not enough for me to be healthy. I ran a trial with N=10 on glutathione and/or precursors, I did an N=1000 questionnaire development study with 1000 personally done symptoms histories and interviews.

    It wasn't handing out a questionnaire, it was developing one, and coupling each and every personal face to face live interview with the observed response to a dose of MeCbl 1000 mcg , 1 of 2 5 star brands, MeCbl 5000mcg 1 5 star brand, 3mg AdoCbl or 1mg MeCbl and 3mg AdoCbl. And before that I ran a N=5 trial comparing 10 brands of MeCbl. That was the trial that gave us some predictable and reliable brands of MeCbl for use and comparison. Oh yes, then there were the trials that pinpointed paradoxical folate deficiency/insufficiency in humans, made the low potassium sometimes noted in b12 trials predictable and can be worked with.

    They are also the trials that established the 4 way deadlock of both b12s, methylfolate and LCF. They also led to the first description of the internal triage levels of B12 and folate in the body, the layers of methylation and healing. And these same series of trials have led so far to a partial description of some of the pathways to potential healing from b12 and folate deficiencies in about half of us, if identified and done properly.

    Also resulting from the trials some of the practical effects of b1, b2 and b3 upon a base of the active vitamins, MeCbl, AdoCbl and L-methylfolate, basic research that has never been performed because the industry was busy researching the relatively inactive forms cobalamin and folate. In fact the industry has never appeared to ask why so many of us are sick with these deficiencies while more of us are taking more vitamins than ever before. Results, side effects, or lack there of with CyCbl, HyCbl, ALCAR, folic acid and folinic acid are not predictive of the same with AdoCbl, MeCbl, L-methylfolate and l-carnitine fumarate.

    Some of the test results have changed in the direction of deficiency over the last 20 years and so now deficiencies are being maintained by treating to test results. These deficiencies have become invisible to the testing world. They make so many things go wrong that it makes way too many problems for one cause.
    Last edited: Nov 26, 2013

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