1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Rich Vank's Simplified Methylation Protocol Poll

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Apr 21, 2010.

?

I have tried Rich Vanks Simplified Methylation Protocol with the following results:

  1. I am in effective remission (80%+)

    1 vote(s)
    1.3%
  2. Major Improvement

    20 vote(s)
    25.0%
  3. Minor improvement

    22 vote(s)
    27.5%
  4. No change

    22 vote(s)
    27.5%
  5. Minor crash

    2 vote(s)
    2.5%
  6. Moderate crash

    0 vote(s)
    0.0%
  7. Major crash

    1 vote(s)
    1.3%
  8. Unable to continue protocol

    12 vote(s)
    15.0%
  1. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    951
    Likes:
    92
    That just cracks me up, 2 multis a day.
    I guess that's an indication of how far down the rabbit hole I've gone that something that arcane makes me laugh.
    No advice on doctors.
    I haven't found one that has a clue.
     
  2. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    Something Missing

    I continue to make progress on the protocol, albeit slow, but I also feel like there is some missing element to normalizing many of the chemical processes. I actually feel like I am on the cusp of getting to a new level, but I can't quite figure out what component I am missing. Twice in the last six weeks, I have clearly re-started those chemical processes with dramatic intensity, but unfortunately it only lasts for 2-3 days. In the first instance this correlated to an escalated dosage of adenosyl and methylcobalamin, and the second instance was associated with the addition of nondenatured whey protein and an increased dosage of the cobalamins. Were these causal factors? I cannot say for sure, but they seem to have been. Unfortunately, now, I cannot replicate this, and the detox symptoms have tailed off considerably.

    During those several instances, I experienced a dramatic increases in energy, very bad sulphite headaches, and enormous bile production. Interestingly, with this detox, I haven't had too much corresponding brain fog. It's like I got a big bolus of glutathione to cover all those toxins. Once I decrease the methylation supplements, the sulphite headaches abate, and I have a pretty good day or day and a half afterward, and things slow down again. Honestly, I probably couldn't tolerate these headaches more than a day at a time without rest, but I have no doubt that these symptoms (which are positive and negative) are a step in the right direction.

    The question is, why can't I re-start this process at will by increasing the supplements again? In the past I have felt that viral load and excess oxidative stress has slowed down these processes in no small way. but I don't think these things are implicated now. I feel like there may be some co-factor that becomes depleted, and only when there are sufficient stores can I start the processes (at such a high intensity) again. I've pared down the current supplements, and am now only taking following:

    folapro, 400-800 mg
    folinic acid, 400 mg
    methylcobalamin, 1 mg, t.i.d.
    Yasko multi, x2
    Omega 3's, 1-2 gram
    Coenzymated B12, 2mg (thanks surfbh)
    1 scoop whey protein
    Vit C, 2-3 grams
    probiotics
    Molybdenum, prn for sulphite headaches
    Co-Q10, occasional

    Of the many dozens of supplements I have taken, only a handful have produced obvious results. Many probably had the potential to do so if other missing substances were available simultaneously. My only thought is that I think I probably have been negligent by not supplementing some zinc & magnesium lately. Anyone have any other thoughts about a missing component?
     
  3. Joopiter76

    Joopiter76 Senior Member

    Messages:
    137
    Likes:
    12
    Hi,

    I think you should ad nucleotide and maybe Phosphatidylserine complex. But nucleotide are really very very important. I think you need an extra dose zinc up to or about 40mg. And NADH. If you have sulfite problems you should consider the ammonia protocol.
    you should cut of wey protein, because protein causes increase in ammonia and ammonia is often high in CFS. It contains much glutamate as well.
     
  4. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    951
    Likes:
    92
    b complex, esp. b2 and b6.
    dunno if it will work.. but it's an obvious missing piece.
     
  5. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    I like PS Complex and have taken per Rich's protocol, but I haven't used this in the last month (although I do take omegas liberally in the diet). Probably a good idea to use the PS again. Definitely will get the zinc. I know the whey protein causes side effects, but it provides some energy and I'm not ready to give this one up right now. I have to work, so headaches are a trade off for fatigue. What can you tell me about nucelotides. Is this something that comes from Yasko? How does it help?
     
  6. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    Actually, I am taking a b complex that has riboflavin and psp, so I should be covered there. You said Sam-E has been helpful to you. Can you tell me what benefits this provides? Thanks.
     
  7. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    951
    Likes:
    92
    sam-e: universal methyl donor. helps me with sleep and probably a million other things.

    nucleotides: I seem to recall yasko recommends this for those of us who have high SAH. supplementing nucleotides takes the pressure off the cycle to make new RNA & DNA.
    I never could tolerate this supp. Keep meaning to try again at a lower dose.

    here's one link from amy's site .. but there are others. worth searching for, if you can follow the conversation.

    http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=14403&highlight=sah
     
  8. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    More Ramblings about My Experience

    Don't forget your magnesium. After a couple of days of loading up on this again, I think it is pretty clear that detox associated with this process creates extra demand for this mineral. Obviously it is nearly universally recommended, I'm just suggesting that this protocol might increase your need for mg. Perhaps someone could explain why.

    Sulphite Headaches: As I reported previously, molybdenum works pretty well. I take it as necessary, because when the headaches really come on, I need a large dose but a prophylactic approach might be better. Also, these are frontal headaches, assuming you are trying to discriminate these from others you may experience...you are going to feel them right in your forehead...sometimes unilateral...sometimes bilateral. I'll be looking into the ammonia protocol to see if that might be something that provides benefits.

    HPA axis: Huge improvement here in terms of shifting from sympathetic to more parasympathetic status. I certainly cannot explain the biochemical/neurological changes that created this change, but it has been dramatic. I don't see this getting much better until there is significant mitochondrial improvement. In other words, my severe energy limitations and low-cortisol is going to have to improve before this changes much more, but a least tiny stressors don't induce intense physiological responses.

    Dysbiosis: I strongly believe that the methylation supplements have dramatically improved gi health. I've no doubt been displacing yeast and bacteria. My reaction to foods continues to diminish in intensity. Head gets clearer and clearer--except for those moments when I am mobilizing something in the blood--no doubt much of the brain fog correlated to the intestinal permeability. No cramping, funny noises or IBS symptoms. Seems the glutamine in the whey in just one week has helped considerably, when moderate doses of glutamine before seemed to do nothing. Of course I cannot discount diet & probiotics, enzymes, etc. but there is either a synergistic effect or the endogenous processes alone have done some good work.

    Fatigue: I've been disappointed in this regard. I've had fewer days of severe fatigue, and a number of quite good days, but the average day is not great. Given that I have only discontinued the supplements for several days in the past months, I suspect some of the fatigue relates to the incessant detox/immune activation.

    Despite some periods of symptom slow down, four months of the protocol and I still experience surprisingly variable symptoms. Yesterday, for example, I had this nagging urethral burning/pain. No big deal, lasted for only a day, but it makes me wonder how many different infections I'm dealing with. Honestly, I think most of these problems pre-existed the fatigue, but when my blood sugar crashed and methylation got maxed out, I couldn't recover.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,280
    Likes:
    6,343
    Albuquerque
    Hi Rich and others,

    I was one of those who first "plateaued" on methylation treatment then after about a year and a half, couldn't tolerate the detox. I took a break, have done other detox protocols, and recently re-introduced FoloPro & Actifolate at very low doses (maybe 1/16th of a tab so far?). I had continued to take hydrox B12.

    So far so good--I am tolerating them again and will very slowly work up on the doses. I was inspired to try again as we know that methylation is necessary to silence XMRV--and I am going to be working on that aspect next.

    Sushi
     
  10. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    Good for you. I hope your detox efforts have paid dividends and you can handle more folates. From my vantage point, methylation and gut dysbiosis/intestinal permeability are of paramount importance. A bit of a catch 22 as the intestinal permeability causes constant immune activation and re-toxification once you start stimulating the detox pathways, but you need the methylation capacity to kill the bacteria/yeast that are causing the intestinal permeability. Just recently, my wife noticed that weird sweet smell coming from my perspiration had greatly diminished. This was most certainly a yeast die-off, which has persisted since I first started working on this problem 18 months ago. Methylation enhancement (and presumably increased glutathione) certainly contributed to this. Perhaps some other measures to fix your gut could allow you to be able to turn up the folates. My pre-methylation efforts (which certainly helped) were all pretty conventional--glutamine, probiotics, enzymes, natural antibiotics, diet modification. I got some wicked herx'ing from some of this, but it certainly didn't fix the leaky gut. I'm getting much closer now.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,280
    Likes:
    6,343
    Albuquerque
    Hi Vegas,

    Thanks for your good wishes!

    Yes, I did all the same "gut work" before and during taking the methylation supps.

    The further protocols that have helped addressed heavy metal, toxins, and other infections. I am still continuing this and also will see Kenny De Meirleir in two weeks and he is really focused on the gut--both testing and treatment.

    This should surely help.

    Good luck to you too.

    Sushi
     
  12. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    That's pretty cool getting to see Dr. De Meirleir. I would be interested in knowing if he is currently recommending methylation support. That's also a heck of a plane ride if you are traveling from New Mexico. It sounds a bit silly saying this about air travel, but you better do what I used to do before races and pre-hydrate one or two days before hand because that will be quite taxing on your body, especially if you have OI. Let us know how it works out for you...if you are so inclined.
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,280
    Likes:
    6,343
    Albuquerque
    Thanks Vegas,

    The trip will be arduous, but only 2 flights. Plus, I'll ask for a wheelchair. Thanks for the prehydration tip--I'll do that! I'll also take powdered electrolytes in my water bottle every few hours.

    Whew! Certainly an adventure!

    Sushi
     
  14. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    Rich, do you think that the rate of improvement using a methylation protocol is likely to accelerate over time? Obviously there are other new exposures, stresors, etc. that complicate this hypothesis, but by my logic at some point in the recovery your capacity to improve should accelerate. This seems likely to me because if you are slowly increasing glutathione levels while concurrently lowering the burden of toxins, viral, and bacterial infection, etc. then theoretically shouldn't there be a more robust improvement as you recover. I'm probably not explaining this very well, but perhaps you get the gist of what I'm saying.

    Also, what happened to the sulfite headaches? Not that I miss them, but can you tell me which process is likely working with greater efficiency?

    Lastly, what accounts for improvement in bile function?
     
  15. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    951
    Likes:
    92
    Rich

    another question: why would addressing infections improve methylation?
    is it by reducing oxidative stress or some other mechanism/s.

    thanks
     
  16. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    758
    Hi, Vegas.

    I can't say that I have any documented evidence for an increase in the rate of improvement over time on the tretment, but your argument does seem to make sense. We ran the clinical study for 9 months total, and the larger reports of improvements in symptoms seemed to happen early on, but there's always a problem in asking people to rate their symptoms, because their expectations can change with time, and also people tend to forget how they were in the past. It would be better to have more objective measures, and I actually suggested that in the beginning, but it was considered too complicated for a study in a private practice.

    The relief from sulfite headaches could be due to better function of the sulfite oxidase enzyme, such as from having a higher level of molybdenum, its cofactor, or it could be due to a less severe state of oxidative stress, or maybe better utilization of sulfur metabolites as the sulfur metabolism has improved

    Improvement in bile function may be due to an increase in glutathione, because glutathione is involved in production of the fraction of the bile that is not associated with bile salts.

    I'm glad that good things are happening for you.

    Rich
     
  17. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    758
    Hi, aquariusgirl.

    Yes, addressing infections would likely lower the response of the immune system to them. This response involves producing oxidative stress as a weapon against the pathogens, and the body must be protected against this by glutathione. An increased demand for glutathione will require more homocysteine to be diverted to the transsulfuration pathway, so that less will be returned to methionine. Thus, the methylation cycle will have to make the sacrifice. As there is less demand for glutathione, the methylation cycle can be replenished.

    Best regards,

    Rich
     
  18. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    I am fairly certain they are one in the same.
     
  19. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    758
    Yes, they are. The antidepressant medical food Deplin is also made of the same product, patented by Merck in Germany. I understand that there are also some "knock-off" methylfolate products that contain both the effective form and a "mirror image" form, i.e. one with opposite chirality. I don't know if this would be detrimental or not, but I prefer to stay with the effective forms.

    Also, Amy Yasko is now supplying MethylMate B, which is a liquid substitute for FolaPro. It's available at www.holisticheal.com

    Rich
     
  20. Vegas

    Vegas Senior Member

    Messages:
    520
    Likes:
    564
    Virginia
    I can't say that I have any documented evidence for an increase in the rate of improvement over time on the tretment, but your argument does seem to make sense. We ran the clinical study for 9 months total, and the larger reports of improvements in symptoms seemed to happen early on, but there's always a problem in asking people to rate their symptoms, because their expectations can change with time, and also people tend to forget how they were in the past. It would be better to have more objective measures, and I actually suggested that in the beginning, but it was considered too complicated for a study in a private practice.

    Yes, I would agree that I actually felt better earlier on in the treatment. There seems to be a honeymoon period before the major detox happens, but fortunately there are many indications that my underlying health is much better now than it was then. (I'll detail precisely what has changed next time I get a chance) Gains are obscured by the detox. As you have noted, and I have experienced, it can tax the body quite heavily when these underfunctioning processes begin to work. I have no doubt that the mobilization of some of this stuff creates a significant demand for an already poor antioxidant system simply based upon a worsening of specific symptoms. Folks have to be ready for this or I'm afraid many will be disuaded from continuing. In my view, it's better to titrate downward to a miniscule dosage then to forego treatment altogether.

    The inflammation in my body has greatly diminished, and the p.e.m. has also improved; this is a distinct trend. The current cost of these gains has been pretty heavy brain fog. I envision this is going to take another year or two, but improvement of some of the symptoms that are at the core of this illness, demonstrates that this is the right path.

    As far as your comments about expectations and one's perception of symptoms, I totally agree and had this very thought earlier this week. I feel like I have already lost some perspective of my prior condition, and any improvement is never enough to satisfy me. The ebbs and flows of symptoms and the associated psychological toll contributes to this altered perception. Humans can acclimate to some pretty severe symptoms and the "tease" of partial or temporary improvement is hard to accept.


    The relief from sulfite headaches could be due to better function of the sulfite oxidase enzyme, such as from having a higher level of molybdenum, its cofactor, or it could be due to a less severe state of oxidative stress, or maybe better utilization of sulfur metabolites as the sulfur metabolism has improved.

    Based upon my usage and the timing of the usage of moly, I don't believe this is the factor. Oxidative stress has improved, but I think your third explanation, better utilization of sulfur metabolites, is likely what is happening.

    Improvement in bile function may be due to an increase in glutathione, because glutathione is involved in production of the fraction of the bile that is not associated with bile salts.

    Yes, I assumed this was the likely factor---increased production of glutathione. It's like getting a shot of cortisol. The detox symptoms that follow will catch up to you, but it's good stuff when it happens. When the bile is flowing, the metabolism is revved up, the fatigue significantly improves, I don't have to eat every couple of hours, head gets clearer. It's happening with greater frequency now than it did before. Hence my idea about the accelleration of the processes. The inefficient chemical processes seem to be gaining some speed.

    I'm glad that good things are happening for you.

    Me too, Thanks and God Bless!

    Rich[/QUOTE]
     

See more popular forum discussions.

Share This Page