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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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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

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    I would make a special mention for binders and chelators.
    If you're mobilising metals, or other crap, I think it makes sense to have stuff on hand in the a.m. to mop,bind that stuff up.
    People use various things ...pectasol with alginate, charcoal, EDTA, OSR1, microsilica (biopure),etc.
    I am still working on finding good safe chelators.
    Ideas welcome.
     
  2. Vegas

    Vegas Senior Member

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    My update on the SMP...for what its worth.

    An interesting ride over the last 12 days. As I previously stated, I didn't notice much in the first three days or so, but things started moving later in the first week. Mostly GI symptoms, which were mild. It seems there are alternating days of more intense and less intense reactions. Perhaps that is the norm depending upon the pathogen. From previous experiences, I think I am mostly dealing with some bacterial/fungal die off, but there are some other things happening as well. Interestingly, on the 7th day, I felt the best I have felt in some time. It was really sort of an emotional day. Then the following day it was back to the fun. I became constipated for a couple of days, which is very unusual for me. Then early this week it was back to the very intense "cold hand" stuff, that I've always assumed is just a sympathethic nervous system response. At the same time, I had more intense burning in my eyes, and I had some of the most intense black circles/bags under my eyes I've ever had. Fatigue was very intense yesterday too, and I've had a few other weird sensations where it felt like my metabolism was revving up as I was fighting the fatigue. Again, this is similar to that Ribose reaction I get with sweating, heat generation, etc. Today, I still look like someone has given me 2 black eyes, but I feel quite a bit better. I've had almost no sns/ans adrenaline stuff today. I feel like I am warmer than usual too...lots of sweating, and bm's (TMI, I know). I'm guessing this is going to be a roller coaster ride for awhile, but it is tolerable. The two definite conclusions, sleep has improved and detoxification of some sort has kicked in with a fury.
     
  3. Joopiter76

    Joopiter76 Senior Member

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    are there any reports of dropped virus titers after some months of this protocol?? folic acid makes me tired but folinic acid gave me more energy. oxidized glutathione got worse. so I wonder what reaktion is responsible for the reduced regeneration of GSSG. glutathione reductase? FAD? NADPH? Maybe Rich knows?

    I recognized that although I get lots of B12/MB12/AB12 my MCV is at the top of the norm. So how can this be?
     
  4. Vegas

    Vegas Senior Member

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    Three weeks in with Rich's Protocol

    This treatment has great promise. Although the detox symptoms come and go, the overall picture is trending upward. Both the reactive hypoglycemia and the sympathetic dominance has decreased in intensity. Also, my fatigue has improved. I could only characterize some of the "adverse" symptoms as features of detoxification. I noticed when I increased the folates a bit earlier this week, I had some kidney soreness, otherwise it has been mostly gi issues, including some morning and late afternoon nausea, Although, I've experienced about half of those symptoms reported as part of the clinical study. It seems there are two more intense periods of detox symptoms, awakening and late afternoon. At least in my situation, these symptoms are quite tolerable.

    Perhaps the most prominent pattern I've noticed is the cessation of the detox symptoms, which seems to relate to higher periods of stress, physical, psychological, viral etc. A recent cold virus, eating some things that I apparently have some intolerance too, overexerting myself...all of these things seem to have temporarily halted the progress. Clearly, there is a need to take it easy and preserve your resources for the healing stimulated by the protocol.

    Probably like everyone does at times when they are feeling better, I overdid it yesterday and far exceeded my energy envelope. I'm paying the price today, but when you taste the way life should be, it's hard not getting greedy some times.

    I think zinc may be a necessary cofactor in my situation. Good luck to all.
     
  5. richvank

    richvank Senior Member

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    Hi, Vegas.

    Thanks for posting the update. I'm glad to hear that things seem to be improving for you.

    Best regards,

    Rich
     
  6. Vegas

    Vegas Senior Member

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    A few more comments and questions

    One observation I consider significant is that after I recently contracted a cold, it was followed with several cold sores. As far as I know, I've never had one before nor have I had any HSV symptoms. This seems sort of counterintuitive: to start the protocol and get active viral symptom, but is this perhaps a productive sign indicative of a strengthened immune response?

    Also, of the different stressors that inhibit the detox symptoms/immune response, it seems that the overexertion/PEM (and what I am assuming is the resultant mitochondrial stress) seems to be the one that suppresses the detox most substantially. In other words, at least from my limited personal experience, it seems like overexertion to the point of getting all that PEM/inflammatory pain stuff puts the brakes on everything.

    I increased the folates to 1/4 & 1/2 a pill, and I'm finding myself experiencing some of the most significant brain fog in some time. (many of the other adverse symptoms intensified as well) Short of reducing the dosages, has anyone found anything that can lessen the brain fog?

    Finally, I recently did the baking soda/8 oz water test to check for stomach acid in the a.m., and found that I had no response to this after 5 or 10 minues, which apparently suggests hypo-chlorhydria. Is there a clinical test that can corroborate this finding, if so what would it be? Also, I seem to recall that Betaine HCL may be contraindicated when trying a methyl protocol. If so, what is a good alternative? Ascorbic acid?

    I still remain mystified as to why there are not more people attempting these methylation protocols given the response from such a diverse group of people. I understand this is not a panacea for most, but in my opinion stimulating such a strong detox response with just a couple of b-vitamins is quite extraordinary.

    I would appreciate any thoughts...and a speical thanks for everyone here who shares insights into their experiences and the wisdom they have gained.
     
  7. Joopiter76

    Joopiter76 Senior Member

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    High,

    I experienced the most improvement after adding folinic acid, which aou can get as a seperate supplement. Folinic acid is the final form that is used for DNA repair and RNA synthesis, I recognized no improvement like that just using methylfolate or folic acid. So I guess this is the best thing. Theres one study showing improvement within 81% of the patients using large doses of folinic acid. But I would really slowly raise the amount. I started with 100g which was 1/8 of the tablet. Since then my strength improved much while the bad body feeling didnt.
    Maybe you have to find out which of the folates causes your brain fog there are three methyl-folate, folic acid and folinic acid. a product with just folinic acid is megafolinic.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Vegas,

    I have been using the Simplified Protocol for several years. I did have a clinical test for stomach acid--2 in fact! Genova's Complete digestion and stool test gives a gut PH level--mine was 8.3! Also, there is a test called the Heidelberg Capsule Test. Your doc has to have the equipment though. Basically you swallow a capsule with a transmitter that first gives fasting stomach acid levels. Then they give you baking soda and see how long it takes the stomach to re-acidify. They gave up on mine re-acidifying.

    I take Betaine HCL as do a number of people on this protocol. We are guessing (hoping) that a relatively small dose of betaine won't hurt. A friend who needs MUCH more HCL, buys liquid, dilute HCL (no betaine) from Nutricology. I think they are the only ones who make it.

    Hope this helps! And, many of us had to reduce our doses (particularly of FoloPro) in order to deal with detox. Then we slowly, but very slowly, increased them again.

    Best wishes,
    Sushi
     
  9. ukme

    ukme Senior Member

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    Could you explain why is betaine HCL contraindicated? Also, re the folic acid I am interested to know why are you increasing them from the 1/4 dose as stated in the protocol - is it best to try and increase the doses as you go on?
     
  10. richvank

    richvank Senior Member

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    Hi, ukme.

    There are two pathways for converting homocysteine to methionine in the methylation cycle of the liver and kidney cells. The one that is partially blocked in most cases of ME/CFS is the methionine synthase pathway. This enzyme requires methylcobalamin as a coenzyme, and its reactants are homocysteine and 5-methyl tetrahydrofolate. Its products are methionine and tetrahydrofolate. This reaction therefore links the methylation cycle with the folate metabolism. In the treatment of ME/CFS, it is important to lift the partial block in this pathway, because it is involved not only with recycling methionine and thus completing the methylation cycle, but also with the control of flow to the rest of the sulfur metabolism, and maintaining the folate metabolism as well.

    The other pathway is the betaine homocysteine methionine methyltransferase (BHMT) pathway. It uses betaine (trimethylglycine or TMG) and homocysteine as reactants, and it produces methionine and dimethylglycine (DMG). These two pathways are in parallel, and both are important to humans, especially depending on their current nutritional situation.

    When betaine-HCl is used in large dosages to compensate for low stomach acid, which is present in many PWCs, the concern is that the betaine will overdrive the BHMT pathway, taking flow away from the methionine synthase pathway, which is the one we are trying to encourage.

    The BHMT pathway does complete the methylation cycle, though, and therefore it does help to produce SAMe, which is in this cycle, and which is needed for methylation reactions. One of the methylation reactions is the methylation of cobalamin (B12). This is necessary to supply new methylcobalamin as a coenzyme for the methionine synthase reaction from time to time. So it's important to have some SAMe on hand, even to support the methionine synthase pathway.

    Dr. Amy Yasko has suggested that the BHMT reaction can be encouraged initially, and then, when the supplements are in place to support the methionine synthase reaction (that is, the B12, 5-methyl tetrahydrofolate, and other B vitamins and cofactor minerals), then the flow that is being carried by the BHMT pathway can be shunted to the methionine synthase pathway, by supplementing DMG, thus slowing the BHMT reaction by what is called in chemistry "product inhibition."

    In the simplified treatment approach, a compromise was incorporated by including some TMG (betaine) in the multi that is part of the protocol, but some people may need more to start. This treatment was extracted from the full Yasko treatment, used primarily in autism. In autism, they do not give betaine-HCl for raising stomach acid, so this issue does not come up. I don't know whether the autistic kids have hypochlorhydria or not. But in CFS, it seems very common (I think because of the mito dysfunction and maybe zinc deficiency), so many PWCs find that acidifying their stomach is helpful.

    We have never been able to determine where the line should be drawn with this, and it probably differs for different people. But if a person is taking betaine-HCl and has been doing the simplified treatment approach for lifting the methylation cycle and is not experiencing a response, adding DMG is something that might help.

    Another way to acidify the stomach is to use the dilute HCl solution sold by Allergy Research Group. Some people use lemon juice, also. With that, it is very important to use a drinking straw and to flush the teeth with water afterward, because citric acid will chelate the calcium in tooth enamel, and can damage it. Some people find that apple cider vinegar works.

    I might also mention that in freddd's protocol, large dosages of methylcobalamin are used, and in this case, the need for SAMe is less, since methyl groups are being supplied with the B12. I have some concerns about this approach, as I've explained several times on the forum, but several people are reporting that it works for them.

    Best regards,

    Rich
     
  11. Vegas

    Vegas Senior Member

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    30 Days and counting

    Joopiter,

    thanks for the comments. I just realized that I have not been taking any folinic acid, just folic acid and the L-5-Methyl Tetrahydrofolate. Apparently, I followed the old protocol and purchased Folapro and Intrinsi B12 instead of the Actifolate. Looks like I'm going to need to add some folinic acid, but I will heed your advice and take is slowly. Actually, I'll probably order some Actifolate, so I can stick with the program. My MCV was high normal, and MCHC is above the reference range; is this indicative of anemia?

    Sushi,

    I appreciate your insight into the low acid/betaine question. I plan to keep with the current protocol and will try this if it stalls out. I'm not sure what to make of this detox thing yet. Last Thursday and Friday I felt quite ill and the detox symptoms were at their greatest intensity yet, but by the weekend, it seems they had slowed down again. I don't know if anyone else encountered this, but my pattern is that exertion suspends the progress. When there is what I assume to be oxidative stress I seem to get constipated and many of the detox symptoms abruptly stop. Most recently, these have involved burning eyes and headaches along with the ongoing gi symptoms. Perhaps these are "sulfur" headaches, I have no idea but I definitely have a sulphur sensitivity, assuming my reaction to sulfa antibiotics is a good indicator.

    Ukme,

    As for the dosing, I think the decision to increase the dosage is wholly based upon your symptomatic response and your interpretation of the significance of these symptoms. Although we all speculate about symptoms, most who have dealt with cfs-me seem to very much in tune with their bodies, and there is some degree of intuition that enters the equation. I choose to increase the dosage because the symptoms I was experiencing were clearly not an exacerbation of my underlying condition, but rather something new. From a very limited detox experience, I still recognized many of these symptoms as being similar to those. Despite the fact that this is more of an art than a science, you still need to observe the basic rules including slowly titrating and individually adding or substracting components.

    I will also add that by late last week I was questioning my decision to increase the dosages because I felt like I had been poisoned: Headaches and a fair amount of nausea, fatigue of a slightly different quality. This passed and will probably intensify later this week, but I'm confident this is the right direction. I have no concerns that this protocol is weakening me or "overloading" my ability to detox.

    At 30 days, I believe there has been some HPA axis improvement because my response to stressful situations is markedly diminished. I remember a few weeks back when my wife left me at home with all 4 kids and I think my sympathetic nervous system was going to go crazy. I just couldn't handle it; the stress response just made me sick. Tonight, not much of a problem at all.

    Unfortunately, I wouldn't say there has been any improvement in Post Exertional Malaise, but I've had this for a decade, and it's early. Maybe the folinic acid will augment this.

    Also, the L-5 folate seems to be "driving the show," but retaining the sublingual hydrocobalamin for a longer period of time seems to intensify things as well.
     
  12. Joopiter76

    Joopiter76 Senior Member

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    maybe try to add in 100 to 200g of moybdaenum for better sulfite to sulfate conversion. Sulfites inhibit some enzymes.
     
  13. Bayly

    Bayly

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    I have experienced major improvment on this protocol, even though my Vitamin Diagnostics blood tests showed minor improvment. Thanks again Rich for your undying commitment to us!

    I have been on the protocol (with some variations along the way) for nearly 2 years. I know Rich has recommended a "maintenance" protocol, but I can't find his suggestions.

    Rich, or anyone, please remind me what the maintenance doses are for those of us who have improved. (Improved meaning I can work full time at a job where I have huge amounts of flexibility, help prepare dinner, sometimes socialize during the week, go to bed at 8pm. I cannot exercise and have to pace myself, but most who did not know me 2 years ago would never think I had been severly diabled by this illness for several years.)

    I vaguely remember Rich saying that we could maintain with only one of the folates, but I don't know which one. Thanks for anyone who can guide me here.
     
  14. Vegas

    Vegas Senior Member

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    Maintenance Protocol

    I am no where near the maintenance dosing, but I recall Rich mentioning Folapro, hydroxocobalamin, and NAC. I also read where he recommended grape seed extract for some extra antioxidant support.
     
  15. Vegas

    Vegas Senior Member

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    I continue to find that as long as I maintain a relatively low-energy output status, I make incremental gains. Saturday marked the 5th week, and I can clearly see that I am benefiting from the protocol. As per my usual fashion, I over-exerted myself on this date, and two days later I am still suffering from the inflammatory pain and exacerbation of other symptoms that has always been associated with this PEM situation. Regardless, there was no way I would have been able to do what I did no Saturday had it not been for the simplified protocol and what I assume has been increases in glutathione levels. My muscles were strong ( a relative concept these days), not shaky, my head was very clear; it seemed I was about to cross a threshold for symptoms while at rest. In other words, my baseline on Saturday with sedentary activities was quite tolerable. I am starting to think that if I can suppress some of the free radical damage more effectively, I might actually speed up the process. Perhaps I need some liposomal glutathione. Timed release NAC doesn't seem to be doing much. I know the other part of the equation is to reduce energy exertion, but I just don't have the will power.

    Can't tell if molyb helped the headaches because these have lessened in the last week notwithstanding the moly. Thanks for the recommendation nonetheless.

    P.S. With regard to post-exertional malaise, I have had this for so many years, I accurately predict judging from the day 1 symptoms, just how much unpleasantness I am going to feel the next day. The first symptom I get is tingling in the fingers, then burning eyes, and eventually pain in the upper part of my eyes, and a feverish feeling with mild headache. The latter symptoms mean I'm going to feel sick for a good 2-3 days. The eyes must be highly susceptible to oxidative stress/inflammation, because when I was at my worse, one or both of my eyes ached for weeks.

    1/2 Intrinsic B12 (still need to get the folinic acid in the actifolate), Phosphatidylserine, perque hydro 2 mg, 1/2 folapro, yasko's yellow multi x 2, molybdenum 150-450, pantethine 900 mg, vit c 4 grams, occasional zinc, 600 mg timed release NAC 4 x week, probiotics, occassional Betaine HCL, lots of protein, low carb-no sugar/minimal grain.
     
  16. Joopiter76

    Joopiter76 Senior Member

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    Hi Vegas,

    I just realised that if someone experienced no improvement on the old protocol with no folinic acid the reason may be that this person has KPU which leads to a permanent loss ob P5P and Zinc. People who have this, need at least 50mg zinc and 50mg P5P maybe more. The KPU leads without additional supplementation of these too to a severe zinc and P5P deficiency and affects so the methylation cycle at one of its weekest places, the methioninesyntase/methioninesyntasereductase as this is a zinc and B6 dependent reaction. so if there is a deficiency of zinc an P5P (B6) the methyl-folate cant transfer its methyl-group to B12 and so methylfolate looses its function because it can be converted back to folinic acid. this is what I guess may be a reason why people profit directly by adding folinic acid and this may be a hint to use Methyl-B12. some people react severely to zinc supplementation because of its possible blocking influence to the citrat cycle and its function of stimulating NMDA receptor. So if the last point occurs, it may helpt to balance GABA/Glutamte as Yasko suggests, (Mg, GABA, Pycnogenol, etc)

    you may need B2 (300mg) for your headache (eye ache) my sister had this and since I recomended B2 its gone. This my be also a sign of p5p (B6) deficiency. I suggest: Check if you have KPU.

    I think panthethine is to much with 900 because its alredy the active form. Lots of protein may cause lots of NH3 /Ammonia which is very very bad and mops up your BH4 so have a look at your ammonia level. Check your pyruvate in the urine or blood, if it is low, you should ad more carbohydrates in. If you just eat proteines or so, Klebsiella, clostriadia and all the bad guys will have very good meals inside your gut and get many many babys. I know this because I did the same some time ago.......

    regards,
    Joopiter
     
  17. Vegas

    Vegas Senior Member

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    Appreciate the thoughts. I'll probably stay the course for the time being as I feel like I am making slow, but steady progress.

    At about 5 & 1/2 weeks, I would classify my improvement as minor, although I certainly wouldn't have expected any major improvement in this relatively short time period. The detox effect is unmistakable. My observations are that this has involved every possible route: skin--including nasal passages, lungs, urinary tract, & bowels. Apparently, I had some chronic sinus infection that I was unaware of, because despite the fact that I haven't had a sinus symptoms in a little while, today I'm getting some sinus drainage with the characteristic odor that one finds after successfully treating an acute episode of sinusitis. Again, I would assume based upon other responses that this has a fungal etiology.

    Not that this is any great revelation, but it is imperative to keep the bowels as regular as possible, and while liberal amounts of fiber and water are important, you have to avoid food sensitivities. I'm sure there are a lot of things that can cause constipation, but I think foods that are causing an "allergic" response are high on that list.

    The B12 must also be doing some healing related to some minor neuropathic pain as I'm having some itching sensations over the nerve that the surgeon inadvertently stuck with a needle three-4 years ago, like one feels when nerves regenerate after an injury.

    Also, after a recurrence of headaches, on second thought, I do think the molybdenum is worthwhile.
     
  18. dannybex

    dannybex Senior Member

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    That would definitely be my guess. Maybe not exactly a 'strengthened' immune response, but perhaps a balanced immune response. Most of us never get colds or real flu's once we become ill with ME/CFS, because the immune system is shifted to the Th2 state. I believe it's Rich's (and also doctors like Myhill, etc.) belief that the methylation cycle block is what ultimately causes the immune dysfunction rather than the other way around. A cold or flu, with a real, decent fever, would be a good sign I would think.

    This is another guess, but since we need folate and b12 to help make new cells of all kinds, and if overexertion damages those cells, then my guess is that the folate/b12 would go first to repairing/making new cells, thus putting 'the brakes on everything'. ???

    I too did poorly on the baking soda test. A microscopic burp after about 9 minutes...just ridiculous. When I first came down with this #*@*!**!!! back in '98, the docs suggested betaine HCL, and I had to take NINE capsules before I felt any warmth. I was eventually able to back down to about 5 per meal, but in recent years, esp this past year, I backed off more (as one gets so sick of taking all this stuff)...but I paid the price w/muscle loss, bone loss, etc. -- and terrible digestion. So I'm back up to 7 capsules with a regular meal, 8 if I'm taking calcium. I think Rich says that once the methylation cycle improves, the HCL output should improve as well. He told me if betaine HCL turns out to be a problem, then supplementing with DMG might help. That's of course something to confirm with Rich, and he's away for a few weeks.

    Me too. I think the main reason is that as a culture, we've been indoctrinated to think we need a drug for this and a drug for that (and of course in certain cases that's true), but Rich said this methylation problem has been found in 'almost all' PWC's, and believes it may be a good biomarker because of that. Perhaps for some it just sounds too good or too simple to be true, even though it can be complicated (there are other nutrients/minerals/amino acids that might be required.

    I just started the protocol about 8 days ago, under my docs supervision, and she said it may take 3-4 months before I notice a definite overall improvement. I have noticed that I do sleep better, recall dreams better, but also have noticed worsening symptoms (detox?)...slight headaches, stiffer muscles in the AM, etc -- and also that itching thing you talk about.

    Best of luck

    Dan
     
  19. aquariusgirl

    aquariusgirl Senior Member

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    i got off sleeping tablets after 7 years ..after a couple fo weeks on the simplified protocol.

    I think everyone shld have some sort of binders and chelators around for all that crap you're gonna detox.

    The once a week yasko charcoal mag flush is not gonna cut it.
     
  20. Vegas

    Vegas Senior Member

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