stress, CFS and the methylation protocol

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Apr 1, 2007.

  1. deliarose

    deliarose New Member

    hi all

    AS you know a bunch of us on this board are experimenting with a new treatment approach based on Rich Van Konyenburg's theory of CFS.

    He holds that CFS is due to a body-wide depletion of glutathione due to a block in the methylation system.

    (Huh, methly-wot? Yeah, I know.. pls read on...)

    He believes that the lack of glutathione (the body's master antioxidant) can explain many of the problems seen in people with CFS, including poor sleep, hormone problems, malfunctioning immune system, etc, etc.

    But what causes the methylation block, and how is that related to the "flu that never went away" or the viral onset so many of us experienced?

    Part of the answer is stress. Long-term stress, according to Rich.

    He explained it all in a response to a question on the 3rd thread of the methylation/glutathione protocol. It was kind of buried there, so I'm taking the liberty of repeating it here.


    Why onset after viral infection?

    First, a lot of stuff happens behind the scenes, due to a load of combined long-term stressors, which can be physical, chemical, biological, psychological/emotional, or any combination of those. These may seem like apples, oranges, bananas and grapefruit, but you can add them all together, because the nonspecific stress response systems respond similarly to all of them. So it's the total load that matters, and it has to be long-term, like, say, months or longer.

    If this load of stressors is dumped on a person who has inherited any of several combinations of polymorphisms in certain genes, the result is that their glutathione becomes depleted after a while.

    The depletion of glutathione allows the reactivation of viruses and intracellular bacteria that had been kept in latency by adequate glutathione. When they reactivate, the immune system detects them, and the T cells try to mount a cell-mediated immune response.

    To do this, they need glutathione, so they grab glutathione and cysteine (the rate-limiting amino acid for making glutathione) from the blood.

    This robs the supply to the skeletal muscles, and that allows the superoxide to rise in the muscle cells and shuts down their Krebs cycles. That causes the physical fatigue that hits at the same time the person becomes conscious of an immune response to a viral infection.

    This is the first point at which the person realizes they are ill, but the plot has been hatching behind the scenes for quite some time before they become aware that anything is amiss.

    So now there still isn't enough glutathione, and in particular there isn't enough glutathione to protect the B12 supply, as it normally does.

    With low glutathione, toxins such as mercury build up. When they get high enough, they prevent formation of methylcobalamin, and that shuts down methionine synthase and the methylation cycle.

    When that happens, the folate cycle, which is linked to it, goes down, too. That puts a monkey wrench into the formation of new RNA and DNA, so the T cells cannot proliferate.

    Thus, the immune system now cannot defeat the viral infection for three reasons: First, glutathione is low. Second, it can't build an army of T cells, because the folate cycle is shut down. Third, there is now not enough methylation capacity to silence the viral DNA, so they are free to express their genes and make new virii.

    So this develops into a guerilla war between the immune sytem and the viral infection. Neither side wins. That's what keeps the person sick.

    Now, a whole lot of other things happen after that, producing all the other "fascinating" symptoms of CFS (sorry, bad choice of words). If want to know the details of that, please consult my 2004 and 2007 poster papers. I've been able to explain nearly all the symptoms from this starting point.

  2. deliarose

    deliarose New Member

    I'm sure I'm not the only one interested in teh stress/virus/CFS connection. right? Right?
  3. deliarose

    deliarose New Member

  4. elliespad

    elliespad Member

    I've been saying FOREVER that we must FIRST have a genetic predisposition to faulty/impaired Glutathione and then also had the misfortune of SIGNIFICANT chemical exposure which starts a HUGE cascade of free radical damage, and all the dominos begin to fall. He apparently believes that non-chemical, non-biological stresses can bring this on, and that may be. But I still think the most significantly impaired have had SIGNIFICANT chemical exposures, and they may not even realize it. I didn't.

    If either or both of us are right, treatment would be the same. I have been struggling for 4 or 5 years trying to detox by building Glutathion by taking supplement precursers, supplementing with it through IV, and always running into slow progress, no progress, setback, and discontinuting treatment attempts due to unbearable detox symptoms. I didn't understand the methylation side of it, and it makes PERFECT sense, and that is how I am proceeding with my treatment plan. And I have a high level of hope that this should help MOST, even if it doesn't allow ME PERSONALLY to reverse the neurological problems I have because of my SIGNIFICANT history with Pesticides, herbicides, etc.

    So, giving Delia and big old BUMP back up.

  5. deliarose

    deliarose New Member

    I am pretty sure it took a case of EBV followed by 2 ill advised courses of antibiotics in quick succession to push me into CFS.

    I was always a bit high strung.. but I am convinced that if those stupid, no-good doctors hadn't Rxed the antibiotics I would not be here today, and the last 10 years would have been v. different.

    No wonder they say antibiotics are over prescribed.

    I haven't touched them since.

    Thanks for the bump elliespad. I really hope this protocol helps u out.. It's intersting to note that you were trying to boost glutathione and it didn't really work.

    That's what Rich found. He tried counselling PWCs to boost glutathione directly but found it didn't work.

    I have my fingers crossed for you. I continue to feel; more and more normal. God it's great! But am sleeping a lot. Night and day.

    Who cares? It's worth it.

  6. springrose22

    springrose22 New Member

    I totally agree with Rich's theory as stated above. I think that he has hit the nail on the head. Right on. Have been reading all the information on methylation and printing a lot of it, watching the progress made by several. Mercury is the main source of my problems in the form of dental amalgams, which I am having removed starting in April.

    My understanding is that I should NOT start methylation until my amalgams are out and I have chelated. This should take several months. Am I correct in waiting after the dental work and chelation are done before starting methylation? My naturopath thinks I should take methylcobalamin shots, but then I started reading about methylation on this board, so thought I should wait. Am I right? Please understand I am cognitively impaired. Just point me in the right direction. Thank you Delia for all your posts, and for sorting things out for me and others. Marie
  7. irishprincess

    irishprincess New Member

    i find it so amazing mine started with ebv too, i didn't think anyone has ever heard of it. when itell people they say huh what is that. it feels good to see someone else has had it.
  8. deliarose

    deliarose New Member

    My understanding is that you should not start chelating until you have removed your amalgams.

    I understand,(and i'm like 99 percent positive.. but pls check with Rich Van K) that you can begin the methylation program with amalgams.

    I don't know if I have an excess of mercury, haven't done the testing, but assume I have too much on board because of 10 years of low glutathione.

    So one has to proceed carefully, one doesn't want to detox and end up redistributing mercury or overwhelming the body's ability to process the newly-mobilised toxins.

    I think that's why I feel so lousey today. I overdid it. See the methylation 3 protocol thread for more info. Third or 4th page.

    But all that means is I have to back off and proceed more carefully.

    BTW. 2 people have come off sleeping medications/herbal aides since starting on the protcol. Me and Elliespad. See her methylation journal for more.

    Three or 4 have reported long-forgotten memories coming back.

    My cognitive function has improved tremendously in 6 weeks, but I had done 6 months of transfer factor, so perhaps that helped get my viral/toxin load down before embarking on this protocol.

    I urge you all to read the threads on methylation and learn from our progress and mistakes.

    Marie: Rich is on a deadline right now.. but pls post your inquiry to him as a separate thread.

  9. deliarose

    deliarose New Member

    I think EBV or mono or glandular fever is implicated in lots of cases of CFS.

  10. deliarose

    deliarose New Member

  11. deliarose

    deliarose New Member

    and you don't need to take your amalgams out to try this approach.

    Sorry.. just wanted to clarify that.

  12. deliarose

    deliarose New Member

    Pls double check with Rich on this, when he is around again, but I would steer clear of methylcobalamin. IT can methylate or redistribute mercury which can cause problems, esp. if it winds up in the brain.

    I noticed 2 women on CFSexperimental experienced neurological problems after using methylcobalamin shots.

    One of them is getwellgirl on this board.

    Safer to use hydroxocobalam IMHO.

    just my 2 cents, and I'm just repeating what others and Rich have observed.

  13. cct

    cct Member

    I'm interested in the stress/virus/CFS connection.

    I have been following your threads, printing them, and reading them in detail.

    Thanks for keeping us informed.
  14. acer2000

    acer2000 New Member


    Is there any research or article that has actually shown that methylb12 can "methylate" mercury?
  15. springrose22

    springrose22 New Member

    I have seen one or two references, and I don't remember where, that methyl B12 can redistribute mercury, but would also like to see some facts on this. I won't be taking any of it until I'm certain of what might happen. I think it is Delia that says above that someone had neurologic problems from it as well. God knows, I don't need any more neurologic problems. Not feeling very well right now, but if Rich doesn't see this I will post to him in a couple of days. Thanks, Delia. Watching your posts. Marie
  16. deliarose

    deliarose New Member

    Arsenbloom and Marie, you make a very good point. Give us the facts..

    I really am not the best person to ask about this. I was just passing on what I heard. I know sometimes that is more of a pain in teh butt than anything cos it raises more questions than it answers.

    I would refer u to Rich when he gets back.

    In the meantime, here is something one of our members posted a long time ago. I saved it for my files. There is a mention in there of methyl B12 redistributing mercury.

    AS I always say For What It's Worth. FWIW.
    MY personal opinion is that it's worth being cautious about mercury. Hence I do not use anything that is supposed to move it over the blood brain barrier, namely methyl B12, NAC or ALA.

    Maybe down the road I will, once I've detoxed a lot and I have tested for mercury. JUST MY 2 cents. I am not giving guidance.


    Swedish physician and researcher, Dr Britt Ahlrot-Westerlund, working at the Karolinska Institute, has investigated levels of specific nutrients, including vitamin B12, in heavy metal-affected patients (and in particular those with multiple sclerosis), since the early 1970's. She has specifically studied vitamin B12 levels, mainly in heavy metal-affected patients, and has done considerable work with supplementing vitamin B12 by injection in her amalgam damaged patients with many different disorders, particularly those with multiple sclerosis. In an article written in conjunction with Heavy Metal Bulletin Editor, Monica Kauppi, Dr Ahlrot-Westernund explains that the administration of relatively high doses of vitamin B12, in the form of methylcobalamin, in the treatment of fibromyalgia, diabetics, MS and amalgam-related disorders, has been gradually increasing in Sweden since the end of the 1980s. She reports that the results of this treatment are remarkable.

    Note: According to the Heavy Metal Bulletin, March 1999, some researchers [including Dr Hal Huggins] and the International Academy of Oral Medicine and Toxicology in the USA have previously recommended caution in the use of methyl cobalamin injections in the treatment of amalgam patients. They feared that vitamin B12 in that form could readily methylate mercury in the body, ie. transform it into its more harmful form of methylmercury - when methylated, mercury is much more easily absorbed to the blood and then transformed to mercury ions, which are an intensely toxic form of mercury.

    In a joint article in the December 1995 issue of Heavy Metal Bulletin by Dr Ahlrot-Westerlund and Editor, Monica Kauppi, they explain that the presence of heavy metals can reduce the uptake of vitamin B12. "The transport of vitamin B12 to the brain can be disturbed or interrupted by heavy metals such as mercury, which affects the blood-brain barrier by causing leakage and hampering the active transport of nutrients. In regard to heavy metal toxicity, in many cases it can be assumed that multiple deficiencies, not always easily separable, can be found."

    "Lately it has been discovered that anaemia is not always present in neurological and psychological disturbances associated with B12 deficiencies. In diseases such as Alzheimer's and suspected amalgam related disorders, hidden B12 deficiencies in the central nervous system (withoutlow blood values) have been found."

    "Vitamin B12 deficiencies have been mainly related to blood deficiency diseases such as pernicious anaemia. Low levels of B12 are followed by neurological and psychological disorders, such as disturbed sense of co-ordination, paraesthesiae, loss of memory, abnormal reflexes, weakness, loss of muscle strength, exhaustion, confusion, low self-confidence, spacticity, incontinence, impaired vision, frequent need to pass water, and other psychological disturbances."

    Dr Ahlrot-Westerlund explained a possible reason for the mercury/B12 connection: "Mercury seems to change valency and binding site in the body, and this causes increased free radical formation. It is possible that the mercury change in valency in pro-oxidative direction, oxidises the cobalt atom in the B12. Due to its molecular size, vitamin B12 normally has difficulties in crossing the blood-brain barrier, and it is possible that denaturation makes this even more difficult."

    "Rarely detectable through normal testing procedures, such as blood serum or methyl malonic acid, B12 deficiencies in the brain and Central Nervous System can be determined by checking "increased homocystein in liquor cerebrospinalis, the most appropriate test method." (There are laboratories which do the specialised LIQUOR test method for vitamin B12, in Canada, France, USA and Britain, as well as the Uddevalla Hospital in Sweden.)

    "The uptake from oral B12 supplementation is usually very low, approximately only 1 percent. Vitamin B12 is therefore given intramuscularly. Highly recommended by the Swedish Association of Dental Mercury Patients, the form methylcobalamin B12 is usually the drug of choice for treatment of patients with amalgam induced disorders. The reason why high doses of B12 (intramuscular injections in a specific form of methylcobalamin) are recommended is that, in the presence of heavy metals in the
    blood-brain barrier, most of the vitamin B12 seems to be consumed (for reasons we don't yet know) and, depending on the level of heavy metal exposure, part of the supplemented B12 will most probably also be consumed in this way until the surplus can be used in the brain where it is needed." She recommends that only certain brands of methylcobalamin B12 are used because some contain preservatives which can cause problems in sensitive patients. She also stresses that for this treatment for patients with metal-induced disorders, a certain protocol be followed which includes the addition of folic acid, and vitamin B6.

    The following case studies are reported by Dr Ahlrot-Westerlund, to illustrate the effect that this type of vitamin B12 administration can have on those who require it. All were dental amalgam patients, who had their amalgams removed, with antioxidant supplementation, as part of the treatment. Dr Ahlrot- Westerlund writes "Of the patients in these case reports, some were ill before amalgam removal, while others developed symptoms in connection with unprotected amalgam replacement, and one patient became too ill to be able to complete the amalgam exchange. Not all patients have "ideal" replacement materials. There are many more cases of remarkable recovery after methylcobalamin treatment than these few, representing patients with a variety of diagnoses."

    1: A Swedish physician, aged fifty, suffered from fibromyalgia and painful paraesthesia for years and was unable to work in her profession. She treated herself with daily injections of methylcobalamin, folic acid and B6, together with the recommended antioxidant supplementation for amalgam patients. She noticed that not only did she benefit intellectually (confirmed by me) but her symptoms ceased after six months treatment. Thinking that she was cured, she stopped the treatment, but after only about a week all her symptoms returned. She recommenced the treatment and after eight days she recovered.

    2: A patient with a diagnosis of multiple sclerosis was investigated for heavy metals in 1985. She had a high pathological level of mercury in the LIQUOR test (2.3 milligrams mercury per litre). Her condition rapidly deteriorated. For six years she slurred incomprehensively, and she could not fix her eyes long enough to be able to read due to nystagmus, dimness of vision and double vision. She developed a spastic paraplegia and as her hands were paralysed, she was unable to feed herself. She was confined to a wheelchair. In November 1994, the vitamin B12 treatment was started (similar to case no.1). After a week the patient was able to speak on the telephone in a normal voice, and she noticed that her mind had 'cleared up'. Ten days later she was able to read the newspaper for the first time in over seven years, and to do fine embroideries in silk. Three weeks later she could stand up with support and eat without much assistance (the left hand is still not functional but the right one is fine). She is now taking part in social life and goes to the theatre and restaurants. In her latest report in December 1995, she told me that she felt much stronger and less tired, although she was still unable to walk.

    3: A Swedish member of parliament, with chronic mercury poisoning from dental amalgam, was becoming more and more exhausted and progressively losing her capacity to work. Having removed her amalgams a few years ago, she had followed the recommended antioxidant program. After about five months of methylcobalamin treatment, her capacity to work and her intellectual capacity in general greatly improved. She now works 16 to 18 hours a day and only needs to sleep for five hours.

    4: A former lieutenant in the Swedish army, born in 1959 wanted to change his career to medicine. In his third year of medical studies however, he became ill and was diagnosed with amalgam toxicity. His symptoms included physical weakness and dizziness, but above all he suffered from a very strong depression (with suicidal thoughts), and an inability to concentrate which forced him to give up his studies. He took antidepressants, and in early 1995 began the methylcobalamin program, which in his case also included a high oral dose of vitamin C (twenty grams per day) and the amino acid tryptophan. Last summer he stopped taking the antidepressives and his condition since then has gradually improved. He is now working full time as a teacher.
  17. deliarose

    deliarose New Member

    this kind of works v. what I was saying which is that methylB12 is dangerous..

    But if ppl think it's useful.. I'll leave it up. I was considering taking it down....

  18. springrose22

    springrose22 New Member

    Interesting Delia, that article you posted seems to say that Methyl B12 would be good, but I'm so darned scared of getting worse, that I am going to keep digging and reading until I know for sure there's no danger. Marie
  19. deliarose

    deliarose New Member

    i only realised that after I posted it..There is a paranthesis where one expert is quoted saying he wldn't use the methyl variety...

    but yeah. clumsy of me. doesn't really support my point.

    oh well.

    Rich has spoken about this.. but maybe on teh yasko list.

  20. deliarose

    deliarose New Member

    You may find this of interest. Someone posted this on another list.. and just fyi, Kane and Speight are in private practice and sell these IVs at their clinics, so they are promoting sthg they sell.
    (just wanted to make that clear.. not saying it takes away from their research)

    (taken from The Detoxx Book by John Foster MD, Patricia Kane MD, and
    Neal Speight MD)

    In Chapter 7 of the Doctor's Book they say that Glutathione (GSH)
    performs many vital physiological and metabolic functions within all
    cells. It is a potent reducing agent with many actions at the
    molecular, cellular and tissue levels because of its impact as a
    systemic anti-toxin. They think that the glutathione status of a
    cell, the excess of reduced glutathione (GSH) over oxidized
    glutathione (GSSG) may be one of the most accurate indicators of
    cellular health.

    GSH is the most abundant nonprotein thiol in the body and it provides
    the reactive thiol (SH) group which is responsible for the varied
    functions of GSH which include –

    • Maintenance of protein structure and function
    • Regulation of protein synthesis and degradation
    • Stabilisation of immune function
    • Protection against oxidative damage

    GSH also serves as a storage and transport functions in –

    • Leukotriene and prostaglandin metabolism
    • Reduction of ribonucleotides to deoxyribonucleotide s
    • Modulation of microtubule- related processes
    • Formation of bile

    GSH is a tripeptide formed by linking 2 amino-acids, L-glutamate, L-
    cysteine and glycine. The liver is the major site of biosynthesis of
    GSH and has the greatest concentration of it followed by the spleen,
    kidney, lens, erythrocytes and leukocytes.

    It is a complicated system that keeps GSH in the form that enables it
    to perform the vital functions mentioned above; oxidant stress will
    overwhelm the system and stop it from working leading to the
    depletion of the intracellular pool of GSH. It can also be depleted
    when GSH is conjugated to foreign compounds.

    Proteins may be activated or inhibited by the exchange between
    protein and GSH.

    GSH plays a major role in detoxifying many reactive metabolites by
    binding to endogenous compounds which serves to –

    • Limit and regulate the reactivity of chemicals
    • Facilitate membrane transport and elimination from the cell
    • May lead to the formation of essential biological mediators

    GSH forms metal complexes via non-enzymatic reactions. It plays a
    crucial role in metal transport, storage and metabolism being one of
    the most versatile metal binding ligands in the body. GSH contains 6
    potential co-ordination sites for metal binding; the cysteinyl
    sulfhydryl, the glutamyl amino, the glycl and glutamyl carboxyl
    groups and 2 peptide linkages.

    Mercury may bind to a variety of enzyme systems with a particular
    affinity for ligands containing sulfhydryl groups. GSH is the major
    dialyzable methyl mercury binding substance in the brain and may bind
    up to 30% of cellular methylmercury.

    A considerable amount of methymercury is excreted into bile when
    adequate concentration biliary GSH is available thus the primary
    mechanism for removal of mercury is through its bond with GSH via
    bile, however a sluggish biliary flow due to biliary congestion
    renders an impaired elimination of Hg.

    Oral loading of L-cystine and N-acetyl cysteine (NAC) would be
    contraindicated in the mercury compromised patient in that these
    compounds may facilitate redistribution of mercury from tissues
    throughout the body and exacerbate the adverse neurological impact of

    However the supplementation of branched chain amino acids and L-
    Phenylaline would be supportive to the metal toxic patient and
    inhibit the transport of the methylmercury complex across the blood
    brain barrier. Although the oral use of methionine might be
    considered in patients with disturbed methylation pathways, as is
    often the case in states of neurotoxicity, methionine may stimulate
    homocystine synthesis. In addition the use of methionine can
    suppress the release of GSH from the liver.

    Neurotoxins may present in tandem as pathogenic and heavy metal
    burdens as mercury, lead, cadmium and arsenic. Both pathogenic and
    heavy metals are lipid soluble and may reside in the liver and
    biliary tree. Removal of mercury is challenging due to its
    lipophilic nature.

    The administration of DMPS and DMSA can mobilize heavy metals such as
    mercury yet may cause serious side effects in patients with
    neurological involvement.

    Conversely the use of an IV Glutathione fast push can safely and
    efficiently relieve the body burden of heavy metals, biotoxins,
    endogenous and exogenous toxins.

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