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ME/CFS: A disease at war with itself
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The 3 Ps A Closer Look at the Middle One

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by stressman, Jan 24, 2011.

  1. dannybex

    dannybex Senior Member

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    I know Rich is being somewhat facetious in his use of the word "fun" there...and knows that some of us have had extreme reactions to the methylation supplements. But just in case you're not aware of them Heapsreal, I just want to warn you, as Rich often does, to go VERY slowly, and start with very tiny doses, maybe increasing them even one at a time every 2 weeks or so, to prevent a negative reaction.

    My doctor overprescribed the folates in October and as a result, I had such severe anxiety and cramping and agitation that I thought I was going to die. I became suicidal on at least 5 occasions. I didn't want to die, but just felt like it was inevitable.

    The consensus seems to be that the folates (in too high amounts) caused stored mercury (and possibly arsenic) to be 'dumped' too quickly, causing the severe reaction. Also, it looks like I have problems with the transulfuration pathway (or what I think some call 'sulfation' -- Rich, correct me if these two are different???), which causes even increased problems.

    So anyway, please go very slowly and start with very small amounts.

    I hope so too! Many people as Rich has said have done very well with the methylation supps, and in fact Kurt is doing well with his own slightly altered version -- even with amalgam fillings in his mouth. His case is truly confounding, but perhaps he doesn't have the sulfation problems, because he's able to take high doses of b6, which inhibits the PST enzyme (I think!)...

    Anyway, good luck Heaps! But be careful... :)

    Dan
     
  2. dannybex

    dannybex Senior Member

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    Hi Rich,

    I've been meaning to ask you this weird question, and your comments here kind of caught my attention, so I'll ask it now:

    Is it possible that say, in the case of mercury or other heavy metal or environmental toxin exposure, whether cumulative or acute, that these detox pathways shut down in order to protect the body from worse damage? And so could explain why it might be better or "safer" in some cases to try other methods of lowering toxin levels before attempting to unblock the methylation or transulfuration pathways?

    ???

    Thanks in advance,

    Dan
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks will do, b12 is something i have never had a problem and blood tests show my levels are through the roof anyway, will take it easy on the folates. Most things that work on the brain chemicals for me seem to cause increased agitation, my experience with ssri's etc so when things like this happen i back off and start again abit lower and slower. I know theres concerns about lipoic acid and mercury but i have been on lipoic acid for that long even pre cfs that i dont think it would be a problem for me, would it?

    cheers!!!
     
  4. anne_likes_red

    anne_likes_red Senior Member

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    Is Kurt documenting his progress anywhere? I'm a bit out of the loop since crashing myself after a gut (Biofilm) protocol.
    My reaction was similar to yours Dan - not so severe though. Do ya think those Biofilms and the nasties that reside within were holding onto some heavy metals?
    (I'm intersted in Rich's answer to your question above too.)

    Thanks to all participating in this thread. Super-interesting.
    I still need to find a way to support gut (esp. detox from there) and address methylation simultaneously without crashing and burning.

    Anne.
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    rich mentioned better results with treating the methylation cycle by those who also chased after other infections that were diagnosed and were say on antivirals etc. So Anne maybe going after the gut issue first or doing both will help.
     
  6. dannybex

    dannybex Senior Member

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    Hi Anne,

    Kurt has a blog, but I can't remember the name. I'm not sure if he's finished updating his protocol either, but that was the last I heard. He posted on my "Help..." thread last month, and confirmed he still had amalgams. Perhaps he'll swing in here and try to explain further.

    I too am looking forward to hearing what Rich says, but I'm starting to think it's the opposite of what you suggest: That instead of the 'biofilms and nasties' holding on to the heavy metals, the heavy metals are the things that screw up the immune system, the detox pathways, the adrenals, pituitary, etc., among other things (in some people, not all) and in doing so, prevent our immune system from dealing with the nasties, etc., in the proper way...hence, we end up with chronic infections that seem to never go away. XMRV may play a part too, but I personally believe that environmental toxins and exposures are overlooked by 95% of the docs out there, including the 'top' docs...instead, they focus entirely on viruses, bacterial infections, etc..

    If you felt a lot worse after your biofilm protocol, it certainly could be due to things besides heavy metals that may have been released. Definitely a possibility. Toxins of any sort can cause bizarre and incredibly annoying symptoms. I'm curious what protocol you used?

    Mercury does have an affinity for the gut...so maybe if that's an issue for you as it is for me, tackling that first might -- might -- help. And/or maybe breaking up biofilms did release some heavy metals. (?) I'm not sure about biofilms, but quite a few docs say that chronic fungal or candida overgrowth is a sign of heavy metal problems, and won't usually or finally clear up until the metals are dealt with.

    But what do I know? I'm just trying to figure this out as we all are. :)

    We're certainly all different, and what works for one person may not work for another.

    Good luck Anne!

    Dan
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Although i get some negative vibes from The man who wrote 'from fatigue to fantastic' the basic outline is quite sound ie SHIN-sleep, hormones, infections, nutrition. each individual has to find which angle is best to attack it from or a couple of angles at the same time. Its a complex illness that requires multiple treatments and keep revisiting things again. Currently sorting out the whacky hormones and hoping it helps the sleep.

    As for heavy metal toxins, what is the best testing method, urine testing??
     
  8. dannybex

    dannybex Senior Member

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    Andy Cutler PhD recommends the Doctor's Data Hair Elements Test, but I'm sure others prefer other methods.

    Also...sorry, I missed your earlier question re alpha lipoic acid? I'm not certain of course, but if you took it for years and year before you got sick, and you didn't have a lot of amalgams and/or vaccinations...then perhaps it's safe for you to take. Several people (SallyBlossoms for one) have found it to be very helpful for them.

    I'm up waaaaay past my bedtime. Goodnight. :)
     
  9. anne_likes_red

    anne_likes_red Senior Member

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    Hi heapsreal (love Brisbane!)
    My integrative doctor (in NZ) sent a hair sample to The Great Plains Laboratory in Kansas. Other doctors will use other US labs, but perhaps there's even one in Aus these days?
    Urine testing is good for monitoring chelation - though I didn't do that....I mean, I did chelation but didn't have it monitored by testing.


    Thanks Dan - I rediscovered Kurt's blog. Glad he's doing so well.
    Re biofilms, I started gently with apple cider vinegar, active manuka honey, coconut oil, fermented cabbage juice (I know!!!...It's for the probiotic affect), did that for about a month then added in Kirkman's Biofilm Defense plus rotated elderberry extract, garlic olive leaf extract and oil of oregano as anti-nasties. I also used citrus pectin, some other binders, and microsilica. I've probably forgotten something in there. Anyway I crashed from the detox, die-off, or both? :In bed:
    Took me a while to get back to where I can think of looking at a different approach.
    :)
    Imagine if we're well some day. Everything will seem so easy! LOL.
     
  10. stressman

    stressman

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    Hi Rich,

    How good to see your name on this thread, thanks for posting!

    There's a little more method than madness in what I'm proposing for my daughter, but first, a little more about me. I am certainly heavily predisposed to CFS, having spent all my life with periods of complete mental exhaustion and myalgia in the arms and legs, chronic recurrent every few weeks or months. Made life interesting at school/college/work! I also have IBS, diagnosed as long ago as 1978.

    In the early '80's I was interning on a regression therapy I'd studied (spare time). Everyone who learned, and everyone who received the therapy was required to do a sauna detox based around niacin as a vasodilator. The reason for this was that there was always a percentage of clients whose progress was very sticky. It was discovered that the very worst of these had done a lot of LSD. The later blanket requirement for detox came when the benefits proved stellar for almost everyone's response to therapy. Hence my "Detox First!" approach.

    Interestingly, the therapy was based upon regressing the subject back through a series of similar conditions until the first incident was contacted. Briefly, the condition would then just blow away. Worked like dynamite, too!

    My first and indeed ongoing mentor on supplementation is the good Dr Atkins' 'Vita-nutrient Solution' book. There's almost everything there that is on the CFS forums, plus more. For instance, he administered IV chlorine dioxide to his FM and CFS patients, plus caprylic acid and undecenoic acid for candida etc.

    So, to where I was before:

    Why do PWC's manifest more or less identical gut dysbioses?

    Why do PWIBS's manifest the same dysbiosis, but don't have CFS? (Low glutathione, gut H2S and unstable HPA axis)

    Could some more study help us towards a better understanding, I wonder?

    So to my daughter's protocol:

    Why selenium? Because 1/all UK residents are deficient, 2/because it binds to heavy metals rendering them innocuous and 3/it is a reverse transcriptase inhibitor (XMRV too?). It takes about six months to fully heal its deficiency.

    Why MSM (methyl sulphonyl methane)? Because 1/it mops up virtually anything toxic and eliminates it from the body, 2/it's done absolute wonders for me since last year. It also took about six months to notice the improvement in IBS/intolerance symptoms.

    Why ALA? Because it is the only thing I've read about so far that eliminates mercury from the brain. I'm not adding this until well into the detox regime, and then but gingerly...

    Why NAC? Because 1/the body makes glutathione from it and 2/glutathione is the body's first line of toxic defence.

    Why only four supps? Because my daughter won't take any more! Indeed, when the brain fog sets in, the poor soul can't even remember to take anything. I shall closely monitor her throughout, and at times when she's capable, we'll pop her in the sauna for a good sweat.

    What think you, Rich?

    A couple of footnotes:

    Excitotoxicity: The body normally uses glutamine to produce either glutamic acid (excitatory) or GABA (calming). Perhaps this is why Dr Cheney found GABA a useful supplement.

    H2S: Hydrogen cyanide in cigarettes reacts with the H2S to form isothiocyanate, which is non-toxic. Anyone got a light? ;-)

    ...there being no exit, they left by the same door as in they went.
     
  11. richvank

    richvank Senior Member

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    Hi, Dan.

    The transsulfuration pathway, strictly speaking, extends from homocysteine to cysteine, making use of two enzymes: cystathionine beta synthase and cystathionine gamma lyase (aka cystathionase).

    There is a branch point in the sulfur metabolism at cysteine. It can go into making glutathione, or into making proteins in general, or it can be oxidized by cysteine dioxygenase and then go either into the pathway that makes taurine, or the one that goes on to sulfite oxidase to make sulfate.

    Strictly speaking, sulfation means conjugating sulfate to various toxins to make them water soluble, so that they can be excreted. Sulfation is one of the Phase II detox pathways. One use of sulfation is by phenol sulfotransferase, which detoxes phenols.

    Best regards,

    Rich
     
  12. richvank

    richvank Senior Member

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    Hi, Dan.

    I think that this is a fascinating type of question, and also very tricky to discuss.

    My answer is that I don't think the detox shuts down in order to protect the body from worse damage. In my opinion, the body is not in control in this situation. Its normal defenses have become overwhelmed, and the detox system is shut down by forces beyond its control. The body does what it can to maintain normal homeostasis (or allostasis), but we are only human, and things happen to us that our bodies are not able to cope with on their own.

    But your question could also be addressed at the level of a more philosophical issue, involving the subject of "purpose" in biological systems, or teleology, and this can very quickly get into a debate between intelligent design and evolution, which I hope to avoid, because it can get very devisive, and is probably not possible for us to resolve to everyone's satisfaction! :)-).

    Probably most people in the biological field would go with an evolution argument. The idea here is that the organism has evolved to operate in such a way as to preserve its life so that it can reproduce and maintain survival of its species over time. If this type of principal is active in the situation you asked about, then I guess an evolutionist would have to argue that shutting down the detox system might buy some time so that the individual would be more likely to be able to procreate. It seems unlikely that evolution would have been able to set things up so that it counted on the organism to figure out how to do alternative detox, so I think the only thing it could have provided for by shutting down the normal detox system would have been to buy some time for reproduction. This argument doesn't seem very convincing to me, but maybe others would feel differently.

    In the long run, of course, not having a functioning detox system is not going to be good for the health of the particular individual, but supposedly, evolution does not "care" about that, only about continuation of the species.

    A person who espouses intelligent design, on the other hand, might incorporate the concept that the designer (or should I say Designer) has taken into account that the human being has been designed to be able to think and possibly to figure out alternative detox methods, so that by shutting down the normal detox system and allowing the person to become sick, there will be an incentive to try to figure out what's wrong and how to remedy it. In this case, the purpose might be the continued wellbeing of the individual, rather than the continued existence of the species. While I am sympathetic to the intelligent design view (Remember, my background is in engineering, and engineers are into design. I have difficulty believing that such a fabulously complex system could have come about by some random process, without being designed, since I know how difficult it is to make even simple things work as intended when one is trying to design them), I still think that in this case, the body is just overwhelmed, beyond its designed-in capacity to maintain allostasis.

    The more pragmatic question is your second one, and I think the answer to that is that using alternative detox methods can be a good idea in some cases, and yours might be one of them. I wish I knew which alternative detox approach would be the best. Probably there are several that will work, at least to some degree.

    I hope I haven't stirred up a hornet's nest with my answer to your first question.

    Best regards,

    Rich
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    stressman, get her started on that as it sounds like shes not interested in these but u try 4 treatments and adjust as u go. Has she had much in the way of testing done etc??
     
  14. dannybex

    dannybex Senior Member

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    Thanks Rich for explaining the difference between transulfuration and sulfation! I'll return here if (or I should say when) my foggy brain needs a refresher on that. And thank you too for your take on the chicken and the egg question. You make many good points as always, and I guess it makes more sense that the body is just overwhelmed by so many toxins that it is then that the 'partial block' may occur.

    I do think, or am coming to believe (after trying a low-dose 'coenzymated' b-complex this past Mon-Tues and ending up by Tues evening with that same terrible, extreme anxiety) that at least in my case, I'm going to need to try some other ways to chelate the metals out as safely as possible (probably the Andrew Cutler protocol), and then hopefully return to methylation in the next few months. Believe me, knowing that I don't have 'active' folates, etc., helping me detox and also rebuild my weakened (and highly catabolic) state, is quite frustrating, to say the least.

    Perhaps also addressing the phenol/salicylate/sulfation problem will help reduce these extreme symptoms as well.

    THANKS RICH! :)
     
  15. stressman

    stressman

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    Thanks for your encouragement heapsreal! No, the only test she's had so far is the DeMeirleir urine test for H2S which turned very positive. Ten days on anti-b's cleared it up completely and she felt great for a while. That was ten months ago, since then it's come back twice, she's currently on her third course of anti-b's.
     
  16. richvank

    richvank Senior Member

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    Hi Rich,

    ***Hi, Stressman.

    ***My responses are at the asterisks.

    How good to see your name on this thread, thanks for posting!

    ***It's good to have you here, too!

    There's a little more method than madness in what I'm proposing for my daughter, but first, a little more about me. I am certainly heavily predisposed to CFS, having spent all my life with periods of complete mental exhaustion and myalgia in the arms and legs, chronic recurrent every few weeks or months. Made life interesting at school/college/work! I also have IBS, diagnosed as long ago as 1978.

    ***I'm sorry to hear that you've had to endure all of that.

    In the early '80's I was interning on a regression therapy I'd studied (spare time). Everyone who learned, and everyone who received the therapy was required to do a sauna detox based around niacin as a vasodilator. The reason for this was that there was always a percentage of clients whose progress was very sticky. It was discovered that the very worst of these had done a lot of LSD. The later blanket requirement for detox came when the benefits proved stellar for almost everyone's response to therapy. Hence my "Detox First!" approach.

    ***O.K. Well, as I said, I think that detoxing is an important thing to do, and it may have to be done before the methylation cycle can be brought up, if the enzymes are blocked by toxins.

    Interestingly, the therapy was based upon regressing the subject back through a series of similar conditions until the first incident was contacted. Briefly, the condition would then just blow away. Worked like dynamite, too!

    ***I don't understand the details of this, but it sounds interesting. Is this a psychological therapy?

    My first and indeed ongoing mentor on supplementation is the good Dr Atkins' 'Vita-nutrient Solution' book. There's almost everything there that is on the CFS forums, plus more. For instance, he administered IV chlorine dioxide to his FM and CFS patients, plus caprylic acid and undecenoic acid for candida etc.

    ***I didn't know he did that. Interesting.

    So, to where I was before:

    Why do PWC's manifest more or less identical gut dysbioses?

    ***I suspect it's because glutathione becomes depleted, the methylation cycle becomes partly blocked, and folates drain out of the cells. These have impacts on the gut that are the same in many PWCs. In my experience, they don't all have the same dysbiotic bacterial populations, based on stool testing, but most do have dysbiosis.

    Why do PWIBS's manifest the same dysbiosis, but don't have CFS? (Low glutathione, gut H2S and unstable HPA axis)

    ***Again, I'm not sure that they all have the same dominant bacteria, or that they have the same as are found in PWCs.

    Could some more study help us towards a better understanding, I wonder?

    ***I'm pretty sure that it could, if it was done well.

    So to my daughter's protocol:

    Why selenium? Because 1/all UK residents are deficient, 2/because it binds to heavy metals rendering them innocuous and 3/it is a reverse transcriptase inhibitor (XMRV too?). It takes about six months to fully heal its deficiency.

    ***I agree about UK residents being deficient in Se. This began when the source of grain for the UK shifted from North America to Europe, where the soils are lower in Se.
    I also agree that it binds at least to mercury and forms a very chemically stable complex with it, making it non-bioavailable. Whether it is O.K. to store mercury in the body like this, as opposed to encouraging it to be excreted, is something I'm not settled on. I don't know about the effect on reverse transcriptase. I do know that HIV is one of the viruses that sequesters Se by forming a variant of glutathione peroxidase, which it does not use, and that Coxsackie is another one that does this, but XMRV does not.

    Why MSM (methyl sulphonyl methane)? Because 1/it mops up virtually anything toxic and eliminates it from the body, 2/it's done absolute wonders for me since last year. It also took about six months to notice the improvement in IBS/intolerance symptoms.

    ***I'm glad to hear that you had good success with MSM. I have yet to find detailed information about its biochemistry in the human body, but being a sulfur metabolite, I can see that it could help with detox, since the detox system depends to a large extent on sulfur-containing species.

    Why ALA? Because it is the only thing I've read about so far that eliminates mercury from the brain. I'm not adding this until well into the detox regime, and then but gingerly...

    ***As Dan has mentioned, I think it's important to dose this frequently, around the clock, so as to keep its concentration up, so that it doesn't mobilize heavy metals and then release them to cause trouble elsewhere. I think that Andy Cutler is correct on this point.

    Why NAC? Because 1/the body makes glutathione from it and 2/glutathione is the body's first line of toxic defence.

    ***I think it's important to be cautious with NAC if it is suspected that there may be a high body burden of mercury, because NAC has been shown in rat experiments by Aposhian et al. to move mercury into the brain. Dr. Paul Cheney has often related that he is aware of two patients who took large dosages of NAC (not prescribed by him) and committed suicide. Although the facts are not completely established, his suspicion is that they moved mercury into their brains. Dr. David Quig of Doctor's Data Lab has written a paper in which he recommended that the dosage of NAC be limited to 300 mg per day if high body burdens of toxic heavy metals are suspected.

    Why only four supps? Because my daughter won't take any more! Indeed, when the brain fog sets in, the poor soul can't even remember to take anything. I shall closely monitor her throughout, and at times when she's capable, we'll pop her in the sauna for a good sweat.

    ***I've heard from several PWCs who have documented removal of toxins by use of sauna over a period of time. Dr. Myhill in Wales recommends this. Also, a detox regimen using sauna combined with exercise and nutrition was reportedly used successfully to treat firemen and other responders to the 9/11 attacks in New York City. I think this was published in the Townsend Letter, and was based on a Scientology drug detox approach.

    What think you, Rich?

    ***My comments are above. I hope you will be able to help your daughter.

    A couple of footnotes:

    Excitotoxicity: The body normally uses glutamine to produce either glutamic acid (excitatory) or GABA (calming). Perhaps this is why Dr Cheney found GABA a useful supplement.

    ***I agree. I think GABA is actually made from glutamate, by a reaction that requires vitamin B6. GABA has helped some PWCs with excitotoxicity. It is one of the supplements on Dr. Amy Yasko's list for this purpose. Dr. Cheney has also used the drug Klonopin (clonazepam). Some people have reported difficulty in weaning off of Klonopin.

    H2S: Hydrogen cyanide in cigarettes reacts with the H2S to form isothiocyanate, which is non-toxic. Anyone got a light? ;-)

    ***Too bad cigarettes have some other not-so-nice effects!

    ...there being no exit, they left by the same door as in they went.

    ***Best regards,

    ***Rich
     
  17. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    It's my impression that Paul Cheney thinks that the shutdown of detoxification (both P450 enzymes and methylation) is functional, and that restoring it in people who are really sick would be a bad thing.

    He seems to think the same thing about the low oxygen in the tissues: that it's decreased for a reason, to protect us from having "something worse" happening.

    Is that your understanding of what his position is? Has he explained to you how the body might be purposefully shutting down methylation?

    Based on my own experiences, I believe that my body works very hard to keep from detoxing anything, through any channel, if it's in a bad environment. If I force it to do so (for instance, by doing saunas, supporting methylation, taking csm, etc. etc.), I get extremely sick. In a good environment, detoxification is not fun, but it is bearable and fruitful.

    I thus would like to pose the idea that there's only so much "loose" toxin the body can handle. If it's already at its limit from current exposures, loosening up more from the reserves may not be a good strategy. I've seen people skirt the edges of death trying to push it.

    On the other hand, even when I've been in really good environments, my body has needed help of various sorts to detoxify effectively. So the idea (for instance) that the methylation block will reverse itself when the body is ready is not consistent with my experience.

    Best, Lisa
     
  18. stressman

    stressman

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  19. stressman

    stressman

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    Hi Rich,

    Thanks a million for this, a huge million!

    Yes, the first thing we'll do if and when the detox is successful is the methylation turn-on.

    The regression therapy was Dianetics, originated by the same chap, Ron Hubbard, who designed the Scientology drug detox you mention. This was the detox I did. Rather than psycholigical, spiritual is used to describe Dianetics.

    On Dr Atkins' IV ClO2 therapy, we might wonder why, all of a sudden, there is such controversy about Jim Humble's Miracle Mineral Solution, which is basically ClO2.

    On MSM, here's a good start:

    http://www.msm-info.com/

    We envisage probably six months on the detox without sauna, starting with Se 200 micro-g with A,C&E (how do I get a Greek mu?). We'll watch points, and if all is well, probably much later, next comes the MSM, a flat mustard spoon to start with. I started with a heaped teaspoon, and Herxed all over the place until I re-read the instructions, but that's me... ;-) And so ditto until we are ready to start the ALA. The caps come in 500mg size, so we'll have to break them open and start with the tiniest amount. Then finally, towards the end, we'll do the same with the NAC, by which time any Hg should have been eliminated except perhaps from the brain (though it's possible the MSM will have done this).

    Any glitches and we'll stop immediately. I've still got my drawing board to go back to. Slayadragon's post is frightening enough to keep me well on my toes on this one.

    I'll keep posted on progress here, of course.

    Oh yes, when analysing your next Wagner beam shear web, don't forget to take the tangent modulus into account!

    With many thanks again,

    stressman.
     
  20. Emmanuelle

    Emmanuelle

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    Wow, what bright bunch of folks we are here ... I mean that sincerely. Look at all the research we've all had to do, trying to get better. Amazing!

    I had all my amalgam ("silver") fillings removed about 10 years ago. I didn't improve much until I got a prescription for "Chemet" (brand name) which is what they give kids for lead poisoning. I did do a lot of the more "natural" detox remedies as well, (ALA, MSM, etc.), but no practitioner to help; I was using a book by a dentist.
    Anyway, I did get mostly better-- and then a couple years later got sick again. Two reasons, I think. One, we did a major remodel on a house we bought, (chemicals in paint, carpet, new floors, cabinets, etc.) AND I recently discovered that dental crowns often have amalgam in them ... I have several crowns. (You can often see the dark ridge at the edge of the crown.) Anyway, I'll have those removed when I can. ($$$) Meanwhile, I'm taking MSM for my joints, and several of the other supplements-- maybe that's why my memory and brain fog have improved.

    One thing's for sure: any future fillings or crowns will be composite or the new ceramic.
    Good luck to everyone ....
     

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