methylation/glutathione protocol 6

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by swedeboy, Apr 17, 2007.

  1. swedeboy

    swedeboy New Member

    I think at the beginning of each one of these numbered threads there should be the dosage guidelines, so newbies can better understand what it is we are taking/doing.

    This Post is about members progress/symptoms/questions and Suggestions for the Treatment of Chronic Fatigue Syndrome (CFS) based on the Glutathione Depletion—Methylation Cycle Block Hypothesis for the Pathogenesis of CFS, By Dr. Rich V.K.

    The simplified approach would involve giving the following oral supplements daily, all of which are available from Dr. Yasko’s supplement website at holisticheal dot com

    1/4 tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

    1/4 tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, aka folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

    (up to) 2 tablets (It’s best to start with 1/4 tablet and work up as tolerated) Complete vitamin and ultra-antioxidant from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

    1 softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

    1 sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

    1 capsule SAMe (200 mg S-adenosylmethionine)

    1/3 dropper, 2X/day Methylation Support Nutriswitch Formula (This is an RNA mixture designed to help the methylation cycle. It is not essential, but is reported to be helpful.)

    "Note that I have specified hydroxocobalamin rather than methylcobalamin as the main supplemental form of vitamin B12. I’ve done this to accommodate patients who may have downregulating polymorphisms in their COMT (catechol-O-methyltransferase) enzyme, which many CFS patients seem to have. If they do not have these polymorphisms, methylcobalamin would be more effective, but in this simplified treatment, the patient’s polymorphisms will not be known."

    "I am also including a small amount of SAMe, which is also a compromise, since the amount needed will again depend on COMT polymorphisms, which will not be known for this simplified treatment. The amount of B12 specified is also a compromise, since those with certain polymorphisms will benefit from a higher dosage than will those without them."
    Dr.Rich V.K.[This Message was Edited on 04/23/2007]
  2. lbconstable

    lbconstable New Member

    Good call Swedeboy....
  3. swedeboy

    swedeboy New Member

    I am still going strong with the protocol.

    I have a question, possibly Rich V.K. can answer it best.

    In the first step is says "It is necessary to minimize the use of pharmaceuticals in treating CFS patients, [and] CFS patients [may] suffer from the toxic effects of pharmaceuticals."

    So I am wondering if one needs to cut back and or even stop using pharmaceuticals for the methylation protocol to fully work? Can one get better from the protocol if he or she is taking pharmacueticals? I am wondering if my prescription drugs are the reason why I have not experienced any benefit from the protocol so far?

    I am asking because I take Doxepin, flexeril, and My Doctor also just prescribed me Klonopin.

    Smiles, Sean

    I'm not sure if this is the actual first step of Yasko's protocol or if it's just a sequential order of Rich V.K. explaining the protocol.

    "1. It is necessary to minimize the use of pharmaceuticals in treating CFS patients. There are at least two reasons for this. As you know, the use of pharmaceuticals is based on their being eliminated at certain rates by the body’s detox system, found primarily in the liver, kidneys and intestines. However, many CFS patients have polymorphisms in their detox enzymes, including CYP450 enzymes and Phase II detox enzymes. (If desired, these can be characterized by the Detoxigenomic panel offered by genovations). Because of these polymorphisms, many patients are genetically unable to detox pharmaceuticals at normal rates, and cannot tolerate them. In addition to this, all patients who have the glutathione depletion and methylation cycle block suffer from biochemical inhibition of their detox systems, whether they have these polymorphisms or not. Because of these two factors, CFS patients suffer from the toxic effects of pharmaceuticals. Treatment using nutritional supplements is necessary, and some herbals can be tolerated as well."

    Rich Van Konynenburg

    [This Message was Edited on 04/17/2007]
  4. richvank

    richvank New Member

    Hi, Swedeboy.

    This is a difficult question. I realize that a lot of people with chronic fatigue syndrome (PWCs) who have been treated by conventional physicians are on a variety of pharmaceuticals in an attempt to ease various symptoms. In the state of California, where I live, it is against the law for an unlicensed alternative healthcare practitioner (I don't view myself or advertise myself as a practitioner, but I try to operate within the spirit of this law, nevertheless) to advise someone not to take a drug that a licensed physician has prescribed for them, so I won't do that.

    The statements I made in the treatment writeup are meant as general principles. I think it would be helpful for PWCs to minimize their total toxic load, because of problems with detox in CFS. I can't say specifically how much of an impediment a given pharmaceutical might be to a given individual, because it depends partly on the genetic variations they inherited, and also because this treatment is new, and I don't have much clinical data on it yet.

    If you, together with your physician, decide to decrease your load of pharmaceuticals, it's important to do it slowly and carefully in the case of some of them, so I would urge you to be careful if you decide to do that.

    The treatment I have suggested is designed to help your body to restore the normal biochemical operation of the methylation cycle and related pathways at the root cause of CFS. Pharmaceuticals, as you may know, are for the most part foreign substances to the body that are designed to block some aspect of the normal biochemistry in order to treat a symptom. Most of them do not deal with root causes, nor are they intended to achieve actual cures. So in a sense, these two approaches are working at cross purposes.

    I wish I could be more specific in response to your question, but I think that's about the best I can do.

    Rich
  5. lbconstable

    lbconstable New Member

    Well I think the honeymoon is over. I was very sluggish all weekend and just generally out of it!

    Yesterday I felt better, but still pretty slow and thinking very slowly.

    This morning started with diarrhea and I'm feeling generally better, but still slow. My urine last night and this morning had a stronger smell to it. Not ammonia smell, but something. The things we reveal on this board in the name of health! LOL

    I have a sore throat and noticed a lesion in the rear of the roof of my mouth last night. I don't know what to make of that. Is it opportunistic, since my system might be down with the detox. Is it strep expression? Is it part of the detox?

    My temperature has pretty much been constantly running between 99.0 - 100.0 with a little relief coming in the early evening.

    I'm going to have some urine & blood sampled through Quest (since that's easy & local). My nurse practitioner is getting set up with Doctor's Data and I'll run the urine toxic metals as soon as I can.

    Love & Light, Laurie
  6. swedeboy

    swedeboy New Member

    Hey Thanks Rich, I really appreciate your comments, they help tremendously!
    Yeah I Know you are not telling people to stop taking Rx meds. I am just wondering if my Rx meds are in some way preventing me from experiencing benefit from the Methylation Protocol?

    I am hoping that I will start to see benefit from the protocol soon and in result I will need my Rx meds less and less. I am guessing this is what is happening to those who are getting better on it.

    Right now I am taking 20mg Doxepin (May go down to 10mg when I start the Klonopin), 10mg Flexeril (2-3 times per week), and .5mg Klonopin (Generic form, I haven't started it yet, I just got it today, may start out at .25mg)

    Is there a way to determine if certain Rx drugs are more toxic than others? Or a way to determine the amount of toxocity from Rx Meds? This question may be redundant, and probably the Lab testing involved in the Yasko protocol answers this.

    Please forgive me if I've missed the boat on this, my cognitive abilities are under par, But is your sequential explanation I mentioned above the actual steps of the protocol, or is it just a summary of it?


    Deliarose:
    I remember you saying that you are now able to fall asleep without Rx Sleep Aids. I take that as a good sign that the protocol can work while on Rx meds. In other words one can see benefits first and in result taper off Rx Meds as they start to recover.

    Thanks, Sean :)
  7. Slayadragon

    Slayadragon New Member

    But doesn't it seem like if you're taking pharmaceuticals, you have _more_ need for detox?

    Like if you've been working in a dirty job all day, you have more need for a shower?

    People who work in dirty jobs might never be quite as clean as people who don't (e.g. they may still have grime under their fingernails even when they've done a thorough washing). But it seems better to give it a try than just to let the dirt collect up.

    Making some progress (or at least not backsliding) seems better than not doing anything.

    And if you do make _some_ progress with the methylation cycle block stuff, eventually you might be able to get off the meds (e.g. because sleep or pain gets better). Suffering with bad sleep or pain might make the methylation cycle block supplements difficult to take at all, since they do put some stress on the system.

    Granted, you might make quicker detox etc. progress if you weren't taking any drugs. But for some of us, the drugs make life tolerable. (There's _NO WAY_ I can get off the Lamictal for my manic-depression, but that doesn't mean that I want to give up on the potential benefits of the mcb protocol entirely.)

    Amy Yasko is a naturopath, and she seems fairly opposed to pharmaceuticals of any type on principle. Many of us philosophically pursue a more moderate approach....

    Not that there's anything wrong with just doing non-pharmaceuticals. I would prefer it. But sometimes it just isn't enough, unfortunately.

    Thanks, as always, for your support and help to us!

    Best, Lisa
  8. Slayadragon

    Slayadragon New Member

    so you finally got some klonopin. how is it working for you?

    My guess would be that more toxic drugs (in terms of the detox associated with the mcb supplements) cause more liver damage (a side effect always reported), but that might not be a perfect measurement. It might be a good starting point anyway though.

    Best, Lisa

    [This Message was Edited on 04/17/2007]
  9. swedeboy

    swedeboy New Member

    Yeah I finally got some klonopin (clonazepam to be exact). I just got it today, I will start it tomorrow. It's .5mg and My physician said to start at half a pill to see how I tolerate it. I have a really difficult time with agitated exhaustion, so I hope the clonazepam helps me relax and get some sound sleep. Any comments would be great!

    :) sean
  10. pawprints

    pawprints New Member

    Good luck with the Klonopin. I find just a small amount helps with pain, agigitated exhaustion and general feeling of being overwhelmed. I would love to get off of it but haven't yet. However, after being on a small dose for many years, I have never had to increase it nor did I become dose tolerant. In addition, I have weaned myself off of it several times without any bad side effects. I just think I sleep better with it than without it.

  11. pawprints

    pawprints New Member

    Can you post the websites again to get the methylation/glutathione information?

    Thanks. I met you at the conference in January and found your information very fascinating. I have had some success with Glutathione but nothing that lasts for a long period of time.
  12. richvank

    richvank New Member

    Hi, Swedeboy.

    My writeup was a combination of some general priniciples and a summary of the full Yasko treatment approach. If people would like to know more details of her approach, I recommend her book "The Puzzle of Autism," which is available through Amazon.com. Her complete treatment is quite complex, and I was trying to give sort of an outline of it.

    If you want to find out which pharmaceuticals in particular that you might have difficulty detoxing because of your inherited genetic variations, I would suggest getting the Detoxigenomic Profile offered by http://www.genovations.com. This requires a doctor's order. In the report, they will tell you which CYP450 enzymes have polymorphisms, and in the report to the doctor, which he/she can share with you, there will be a list of drugs that are detoxed by the CYP450 enzymes in which you have polymorphisms.

    I'm sorry that you are not experiencing benefits from the treatment. Do you know whether you have glutathione depletion and oxidative stress? I think that getting a test for total red blood cell glutathione from Immunosciences lab (you have to phone them about it, because I don't think it's on their website) is a good thing to do. It costs about $70, I think. If your glutathione is low, I think it's likely that my hypothesis fits your case.

    Hi, Lisa.

    I think I agree with what you wrote. It's kind of tricky to phase out of pharmaceuticals and into orthomolecular treatment, but hopefully that can happen with time, because cure depends on restoring normal biochemical operation. I understand about trying to find anything that will help with things like pain and inability to sleep and other unpleasant symptoms of CFS. I'm not totally opposed to the use of pharmaceuticals, but I much prefer working with the design of the body rather than against it.

    Rich
  13. deliarose

    deliarose New Member

    about supplements vs. pharmaceuticals, but haven't there been 2 papers which show that ppl with CFS have a harder time processing drugs?

    I think one was presented at the last IACFS conference in Fla by some Korean researchers.

    It showed that CFS patients were taking longer to process the drugs.. something to do with kidney function and time to excretion??

    I took that to mean that our bodies were working harder to break them down...

    I could be off base.. I'm hoping someone else will know more about this.

    delia
  14. deliarose

    deliarose New Member

    just do a search under Rich's name and u will find links to his papers.

    There's a post by Waynesrhythm.. called genetic mitochondrial dysfunction.. connectign the dots.. that has the links mentioned in a post...........

    delia
  15. richvank

    richvank New Member

    Hi, pawprints.

    It's nice to hear from you again!

    I had a short paper published in the Townsend Letter last October that gives some history and an overall picture of the connection between CFS and autism, from my point of view. It can be found here:

    http://findarticles.com/p/articles/mi_m0ISW/is_279/ai_n16865315

    My 2004 AACFS poster paper that discusses glutathione and CFS can be found here:

    http://phoenix-cfs.org/GluAACFS04.htm

    My 2007 IACFS poster paper that discusses the glutathione depletion--methylation cycle block (GD--MCB) hypothesis for the pathogenesis of CFS can be found here:

    http://phoenix-cfs.org/GSH%20Methylation%20Van%20Konynenburg.htm

    My 2007 IACFS poster paper that discusses why CFS is more prevalent in women than in men can be found here:

    http://phoenix-cfs.org/Gender%20CFS%20Konynenburg.htm

    My article on treatment of CFS based on the GD--MCB hypothesis can be found here:

    http://phoenix-cfs.org/GSH%20Methylation%20Treatment%20Konynenburg.htm

    Rich
  16. deliarose

    deliarose New Member

    Yes, I came off trazadone the week I started on the methyl supps.

    At first, in my ignorance, I thought that detoxing toxins from my brain had regulated my sleep function.

    And then Rich explained in a post how methylation helps convert serotonin to melatonin which helps regulate circadian rhythms (adn presumably sleep cycles).

    I do wonder if ppl who are in teh first flush of CFS will get results as quickly as ppl like me and Laurie who have been doing Transfer Factor and other stuff for a while.

    In other words, if your toxic load is high, maybe it will take longer to put a dent in it and see results?

    I don't know. I would give it a good trial and then see if you can taper off yr sleep meds...cos if I understand it correctly, no sleep aides except Xyrem give u stage 3 and 4 sleep.

    And I am not recommending Xyrem! I had a horrible experience on it, and obviously it's preferable to restore natural sleep anyhow.

    How are u doing in general?

    delia

  17. deliarose

    deliarose New Member

    I hear you. I got really sluggish.. and my thinking was really cloudy.

    But that eased off too in time.

    delia
  18. Slayadragon

    Slayadragon New Member

    Yes, my body has a very hard time processing prescription drugs. That seems true of CFS sufferers in general.

    It may be less true for people with just FM, based on the amount of drugs those here seem to take without incident. That's one reason that might support the idea that people with just FM are categorically different than those with CFS (regardless of whether they have FM).

    My mother recently reminded me that I always was very sensitive to prescription drugs, long before I got sick with CFS. That's another good piece of evidence that my problem is an innate biological malfunction rather than one acquired with (say) a virus.

    I'm really impressed that you and others here are getting good sleep with the mcb protocol when in the past you had to use prescription drugs. That bodes well for the future.

    I am extremely interested to see whether you can get entirely well (which I would imagine would include getting the viral problem under control) with the mcb protocol. That would be an amazing leap forward with regard to our understanding and treatment of this disease.

    I'm increasingly of the impression that using it myself is going to be very important or essential if I am to get well and stay well myself. It certainly is showing a huge amount of promise thus far.

    I personally think that my using it _after_ the antiviral is done will be an equally important experiment. Prescription antivirals may or may not be necessary for some people to get past this disease, but it is becoming clearer that in most cases they have not yet been shown as sufficient to get people to total wellness. If the addressing the mcb issue turned out to be the last step (or a first step) to welllness in combination with the AV's, that would be a really terrific thing too.

    It's hard to know at this point, but it's obviously exciting to have this work taking place.

    Many thanks to Rich for bringing the concept to us.

    Best, Lisa
  19. deliarose

    deliarose New Member

    I've learned the hard way that these methyl supps can unleash a bunch of toxins.

    I've tweaked my regime a couple of times. Added B12 shots or more recently a bunch of greenfood to the other supps, and I have felt really sick teh following day.

    Last time, I threw up and just felt poisoned for a day and a half. Got a glutathione IV, nebulised glutathione. Sucked down psyllium. Nothing offered much relief.

    So u gotta be careful. I don't know much about detox, but I assume you can reabsorb toxins that are beyond yr capacity to excete.

    Just a thought.

    delia

  20. Slayadragon

    Slayadragon New Member

    Oh, yes, I wanted to give a status report of my own to Rich.

    My brain felt like it was on fire last week as a result of the Famvir. This sort of agitation is not unusual from AV's.

    I decided to take a tiny chip of the Folapro (less than 1/8 pill) and then (later on that day) nebulize. My brain cooled down within about five seconds!!!

    (I had tried nebulizing twice before without the Folapro, and it did nothing but give me a slight headache.)

    So I decided I loved nebulizing, and did it for a total of about 45 minutes a day for the next two days (scattered throughout). The second day, I got a full night of really good sleep without any Klonopin (kind of a miracle on the AV, which ruins the sleep).

    Then I plunged into an icky toxic-feeling mild depression. (It was over by the next day.)

    Getting my brain to cool down made the detoxing feelings (they weren't that hard to bear) well worth it. I may have reabsorbed a little, but I did get back to normal quickly.....

    I've yet to try the Folapro or the nebulizing again (my brain still feels pretty cool), although I want to experiment further. It would be better to know what to expect though.

    I know that non-denatured whey protein makes my body (specifically my liver) much less toxic.

    I'm wondering if the nebulizing makes detoxing (and resulting icky feelings) go faster though. It felt like it did.

    What do you think?

    Thanks, Lisa