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Ya'lls thoughts on Nitric Oxide/Pall Protocol. Rich?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by CAcfs, Sep 18, 2012.

  1. CAcfs

    CAcfs Senior Member

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    So in discovering that Acai helps me greatly, and that it modulates nitric oxide...I did some research on nitric oxide's roll in CFS, and there is this thing called the Pall Protocol. Verrrry similar to what is talked about here by people like Rich and Freddd.

    Honestly, some of these supplements he singles in on, even some of the random things, have REALLY helped me. I also have MCS. I think there could be something to this, for a subset of us. Yes, you'll recognize a lot of this...TMG, Glutathione, etc etc.

    Below are 3 links (first link very complex, second link simpler, third is an overview of the conditions such as CFIDS on Pall's radar). I would read the third, then second, then first. Sorry, not gonna swap 'em now. The first two links tell you what supps to take if you keep scrolling through:

    http://chronicfatigue.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=chronicfatigue&cdn=health&tm=322&f=00&tt=2&bt=1&bts=1&zu=http://sprident.com/martin-pall/

    http://planetthrive.com/2009/06/pall-noonoo-protocol/

    http://chronicfatigue.about.com/od/treatmentprotocols/a/Pall_Protocol.htm An overview, including all our favorites like orthostatic intolerance, bacteria/infections, chemical triggers, etc.


    -he talks about Minocycline in first link. This helped my sleep cycle instantly and remarkably. Whereas Doxycycline was a nightmare.

    -NAC helps me a lot

    -I saw the second link mentions Hydroxy B12, which helps me a lot, sometimes seemingly more than Methyl B12

    -Acai is one of the N.O. helpers he has mentioned, though he talks about other berries too. I make it no mystery on Phoenix Rising that for me, Acai, freeze dried capsules by Now, have been magnificent and continue to help tons. But this is the first I've seen where a doctor is saying, "take Acai and this is why." OKAY! WILL DO!


    I personally don't believe we all have the same cause for our CFS, but I think that for maybe 20-30% of us, this could be the cause, or at least it's on the right track. Something is up!!!!!
     
  2. SOC

    SOC Senior Member

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    The Pall Protocol was the first thing I tried, mostly because it included all the supplements generally recommended by ME/CFS docs. I had a substantial improvement with it, especially in MCS-type symptoms and brain fog.

    In the early years, my daughter would be asymptomatic for months at a time and then have a relapse. Her relapses were always shorter and less difficult if we put her on the Pall Protocol as soon as there was any sign of a relapse.

    As I understand it, the Pall Protocol also works as a methylation protocol in addition to working on the NO cycle, which may or may not be the reason it can be helpful.

    At any given time, I am taking most of the supplements in the Pall Protocol -- certainly the major ones -- just because they're generally good for PWME.

    IMO, it is unlikely to do harm (except in those with significant sensitivities to supps in general) and has a good chance of doing some good and therefore well worth trying.
     
  3. richvank

    richvank Senior Member

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    Hi, CAcfs.

    I've known and interacted with Marty Pall for quite a few years. I value his work, and I have learned a lot from him. Most recently, he is the person who helped me to explain why the methylfolate in the blood plasma goes down instead of up in ME/CFS. Our most recent interaction was documented in the Townsend Letter in first part of this year.

    Marty was one of the first ME/CFS researchers, along with Paul Cheney, Sarah Myhill and myself, to believe that ME/CFS is fundamentally a metabolic disorder in its pathophysiology, which I believe is increasingly being shown to be true.

    All that having been said, it's also true that Marty and I have had, and continue to have, disagreements about the basic mechanism in the pathophysiology of ME/CFS. My view is that the reactions involving nitric oxide and peroxynitrite that he has described do in fact occur in ME/CFS, but that they are not the most fundamental in the pathophysiology. Peroxynitrite has been part of the model I have suggested since the beginning, but I see its rise as a consequence of the depletion of glutathione, which I view as the trigger for the onset of ME/CFS, in response to a variety of possible stressors that place demands on glutathione.

    In his suggestions for treatment, Marty has emphasized antioxidants. He has also included hydroxocobalamin and more recently, methylfolate. He has suggested that the role of hydroxoB12 is to scavenge nitric oxide, and the role of methylfolate is to scavenge peroxynitrite. In my view, these are parasitic reactions that hinder these two from performing their fundamental roles in ME/CFS treatment, which are to support methionine synthase, to overcome the functional B12 deficiency, and to lift the partial block in the methylation cycle.

    As far as I know, Marty does not believe that there is a functional B12 deficiency or a partial block in the methylation cycle. As far as I know, he is still not recommending a high enough dosage of hydroxocobalamin, applied in a way that will achieve a high enough level in the blood, to have significant therapeutic effectiveness.

    In my view, the reason for the rise in nitric oxide is that because of the partial methylation cycle block, the resulting methylation deficit lowers the production of assymetrical dimethylarginine (ADMA), which is normally the main inhibitor of the nitric oxide synthase reaction. I believe that the rise in peroxynitrite is a consequence of depletion of glutathione, which goes hand in hand with a rise in oxidative stress, which allows superoxide to rise. There is a spontaneous reaction between superoxide and nitric oxide that produces peroxynitrite.

    So, in some sense, it's a matter of disagreement about which is the cart and which is the horse.

    I should note that both Marty's model and mine are focused on the pathophysiology of ME/CFS. Neither deals in much detail with the etiology (or etiologies), i.e. the root causes. I think Marty and I basically agree on the general categories of the etiologies, though. I call them stressors, and within that I include physical, chemical, biological and psychological/emotional stressors. The toxins are included within the chemical stressors, and the infectious pathogens are included within the biological stressors. I believe that the combination of stressors that bring the onset of ME/CFS differ from one person to another. I am very gratified to see the increased research effort by several groups now to look at the infectious pathogens as possible etiological agents for ME/CFS.

    As far as I know, the improvements people have experienced when treating on the basis of the GD-MCB model have exceeded the improvements when treatment has been based on the NO-ONOO model. I don't disagree that antioxidants can help to lessen the oxidative stress in ME/CFS, but I have not found that the core of the pathophysiology, which I believe lies at a partial block in methionine synthase, can be addressed effectively with antioxidants.

    Marty has gone on to apply his model to a number of other disorders besides ME/CFS, including MCS. I have not suggested that the GD-MCB model explains these other disorders. It may be that Marty's model is more applicable to MCS than to ME/CFS, but I have not studied MCS in detail, as he has.

    Again, I want to emphasize that though Marty and I don't agree on some things, I very much appreciate the work he has done.

    Best regards,

    Rich
     
  4. Tammy

    Tammy Senior Member

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    I have yet to really study the articles but I'm really interested. One of the articles said that Dr. Pall himself had CFS..........(..now I can't find the article that mentioned it.) I wonder how he fared with his own protocol? Did he recover? I think I will be purchasing hisbook. Over the years.......I've heard of the debates/theories about the nitric oxide factor but I never really got into it or studied it. Just curious CAcfs.......why did you start taking Acaii in the first place.........out of all the flavanoids and anti-oxidants that are out there? I didn't happen to see that he mentioned that one.....it really doesn't matter but am curious. Thanks........Tammy
     
  5. greenshots

    greenshots Senior Member

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    this has been extremely helpful in clarifying the basic differences in theory! Thank you Dr. Vank.
     
  6. CAcfs

    CAcfs Senior Member

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    Rich, Thank you for your amazing response. :)

    Tammy, The question about why I'm on Acai is interesting....I told this story last night in chat (and it is detailed, because I am explaining why I don't think it was placebo effect). My parents, myself, and my brother are all Republic of Tea fans. It's not unusual to see mannnnny of the Republic of Tea cylindrical tins in any of our pantries at any given time. I currently have about 8 tins I'm working through. We are all tea fans, just for the flavor and the experience, and trying different flavors is fun.

    I was at their house over Christmas, and I can't actually recall if I had had some coffee or not (my guess is I had already had one cup, but they brew it weaker than I), but I remember it was morning and that is my worst time, coffee or not. I decided to have a cup of green tea, grabbed what was there, and brewed a cup. It brewed up purple. Cool. Anyways, as I was slowly nursing it, about halfway through the mug, I was like, "WHAT was in that tea? I feel BETTER." It was like the cloud of illness that I always feel was lifting. My mom was like, "I dunno, I never really drink that, (brother) does." It was like the weird CFS burden I normally have was BETTER, like what happens when you get a B12 shot and it kicks in, or how I imagine glutathione IV is, based on what I've heard. It caught me off guard, wasn't expecting that at ALL. I was sitting in front of TV and it just came over me. I was not really stimulated like with coffee, but just better and able to do more. I was like, "wow, this is going to be a good day." Next day I tried the tea again, same thing, so I had two cups. (It was Republic of Tea's Acai green). And I drink green tea all the time, and tea with hibiscus all the time (it's in many of that brands teas), so it wasn't that. Also, I do smoothies from health food store with frozen blueberries often, etc. But never had a feeling like this.

    So this really got me thinking, I believe I bought a tin of the tea but went through it quickly, and then I went on iherb and ordered Now's Acai in capsule form. About 30 minutes to an hour after taking the pills, I can feel it! Same effect, probably moreso, in pill form. I haven't tried the juice. The pills work better than the tea did, but they take a little longer to work. I would say I notice the tea's effects after like 20 min, the pills after like 30-40 min. But tea's a hassle when I'm tired, and the effect isn't as profound, so that is why I take the pills.

    My guess is that about 20% of us will see this kind of effect if they take the right dose of Acai. At least that would be my hope. If you read the reviews on iherb, a lot of people saw more energy from it. So I think a portion of the population benefits from it, like with B12.

    I am sure people have had dried acai or acai juice, but I think there is something about freeze drying it that preserves the good stuff. Which is what Now's pills are. I won't buy anything else because I know what I'm using is working, so haven't tried anything else.

    I noticed the tea has "acai berry bits" in it, so I wonder if those are freeze dried too, like the Now pills. Maybe it's something with steeping them that helped, vs other Acai forms that are out there. I intuitively feel that I wouldn't get as much benefit from the juice, because my body would be processing all that fiber too. Because I have thought about this a lot.......

    I would just recommend people try the Now pills if they wanna see if it helps them too. Please let me know. I don't notice too much from 1, but 2 leaves a big noticeable increase in stamina, like I get up off the couch and start washing dishes, and then I'm like, "wow, how am I doing this? oh yeah, took the acai an hour ago." It helps me go walk or even run too. I still have CFS, but this is basically the one thing that helps me tons. I have been taking the pills for like a year, I'd say? Maybe only 9 months....I take breaks sometimes if I forget to reorder. Then if I try 3 pills, I don't notice much of an added benefit.

    I had been taking it for awhile without really asking questions, but I noticed the bottle talks about NO, and I started questioning what the heck is going on......so that is how I found out about Pall, after googling NO.
     
  7. richvank

    richvank Senior Member

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    Hi, CAcfs.

    I'm really glad to hear that the acai helps you. If the model I have proposed is valid, I would guess that it must be helping to counter the oxidative stress, allowing glutathione to come up some, at least for a while. As I wrote before, antioxidants do help to counter oxidative stress and can be beneficial in ME/CFS on a temporary basis, and acai appears to be one of the more potent antioxidants. I'm glad you found it, and I hope it can help others who read your post, too.

    In the longer term, I continue to note that so far I have found that the partial block of methionine synthase must be addressed in order to allow glutathione to stay up on a more permanent basis. I am interested in the Rituximab trials, because they may show that there is another way to do this, such as knocking down inflammation long enough to allow glutathione to recover, thus eliminating the B12 functional deficiency and the partial methylation cycle block. If this can happen, it may be that the antioxidant enzyme system will then be able to cope when the B cells replenish again and start to address the infections again. I think we are living in exciting times in regard to ME/CFS research, and I am very hopeful that some of the things that are going on now will give us the answers we need.

    Best regards,

    Rich
     
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  8. CAcfs

    CAcfs Senior Member

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    Thanks Rich. It makes me feel good that you took what I had to say seriously...I guess I was afraid people would think I was "full of it." Honestly, I am not really sure why this is working, but I knew I couldn't keep quiet about it, because if even one person benefits, that makes me feel good. Something's going on, with me at least, that makes Acai work. I'm not thinking I have solved the CFS mystery, but I figured any piece of the puzzle that I find that could help others, I'll throw it out there. We are learning by trial and error. I really am not sure why it's helping, nor do I want to speculate much....I leave that up to people who are not in an Ambien fog like me. :)

    I think the most important thing we can do is find out what works, then research WHY it might have worked, instead of first trying to find all the things wrong (lab findings, etc) with our population (PWC's). Because if you have a laboratory finding, you still have no proof it is related in any way to the symptoms. Correlation does not equal causation. I think the best thing we can do for ourselves is to find out what HELPS, since that is the end goal anyways......so that has been my personal goal, and I do feel lucky that I've found a few things that make a difference. Then the next step is urging others to try them, and see if I get any "hits."
     
    merylg likes this.
  9. richvank

    richvank Senior Member

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    Hi, CAcfs.

    I agree that paying attention to treatments that work, at least for some PWMEs, gives important clues. This has been part of my "M.O.", too. And sharing results with others is important, too, both because it may help them, and because we can start to see what works for quite a few, giving more important clues about the mechanism of the disorder. Thanks again for posting this.

    Best regards,

    Rich
     
    merylg likes this.
  10. richvank

    richvank Senior Member

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  11. lnester7

    lnester7 Seven

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    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046208/

    I am on prescribed inmune modulator , according to this acai is an inmumodulator? See bottom discussions.

    I have found by myself That I do not do good on immune Boosters, and I would react bad to th2 shifters (like Green Tee). We seam to be in categories of people that react good to immune modulators or immune Boosters. You will know what works for you believe me.

    What that tells me if that maybe you should look at your immune pannel it might need modulation like mine. Just a thought.
     
    fozzaw likes this.
  12. CAcfs

    CAcfs Senior Member

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    7, :) You are taking Immunovir, right???

    Yeah, Acai does so many diff things, has so many effects on the body, that I am really not sure what aspect is causing the benefit. Wish I did.

    I have also been noticing a LOT of benefit this week from TMG (this is really my first time taking it). I noticed that is also in Pall's protocol (if you click the Planet Thrive link, the third link, in my first post, you'll see TMG). But many others recommend TMG as well. I am noticing more benefit from Acai and TMG, and I think also NAC to a lesser degree, than B12 in all the forms I've tried. I am starting to think that for me, I am not in so much of a B crisis as a lack of glutathione precursors crisis? But who knows.
     
  13. freshveggies

    freshveggies Senior Member

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    How do you get an immune panel?
     
  14. lnester7

    lnester7 Seven

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    I got mine at Dr Rey (USA,FL). I think you can set a skype consult w Elander also. Any of the CFS specialists.
    What country/state are you on??
     
  15. freshveggies

    freshveggies Senior Member

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    I am in SD.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think any doctor could order the tests--they would just have to know what lab to use. In the States, perhaps a patient of Dr. Rey's could give you that information.

    Sushi
     
  17. CAcfs

    CAcfs Senior Member

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    Found something interesting today, so I am posting it in 3-4 different threads on this site that I tend to update, so bear with me if you see it multiple times....I feel it's relevant on a few threads of mine, and I may start a new one too. I am copying/pasting. Here it is:

    I have not been on this site much lately at all, but I recently came across this article stating that Acai upregulated...or did something to.... two genes relating to glutathione in a mouse study (I think I paraphrased that properly). I was looking for a quote about Acai and cytokines, but I ended up finding this. READ THIS!!!!!! IT IS SHORT. Click link below, scroll down to the section in the middle labelled "Study Details"(it is a short paragraph, but I can't copy it here).

    http://www.nutraingredients-usa.com/Research/Amazing-acai-alleviates-atherosclerosis-Study

    This would explain possibly why Acai helps me in the same way TMG seems to help me, glutathione. I agree with Rich that all roads lead to glutathione. I think the main problem in my CFS is what Cheney says, "too high cytokines and lack of gluathione" (paraphrasing). What's interesting is that certain supps that should lower cytokines don't really produce energy in me, but then some really really do. Then some gluta precursors don't help as much as others. From what I read, there are different types of cytokines, and certain substances lower certain cytokines better? Acai does lower cytokines. And maybe with the gluta, there are just certain things that my genetic makeup needs more than others. Either way, I am becoming a believer that CFS actually is curable.
     
    alice likes this.
  18. CAcfs

    CAcfs Senior Member

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    Hi all. I heard that sad news that Rich is no longer with us. :( Rich, you have changed my life in so many ways, I will be forever grateful!!!!!!! THANK YOU!!!!

    I am a little sad to know he never saw that last post, as I was so excited for him to see it! I think he would have gotten a kick out of it, Acai's link to glutathione. I feel so humbled and grateful by the contributions he has made. Honestly, I feel his posts are the most important posts on this website. And I say that only after trying so many things, including his Simplified Protocol, then trying many other things, then coming back to these theories and finally seeing progress, based on my own tweaking. But really, what I came to realize, is that his theories are the most valid, for the largest group of us......even if we don't see benefit on a given month or year, come back to these ideas, guys....trust me. There is something there. There are many levels to this illness, but what he has to say is very important. Thank you again, Rich!!! You were a blessing to me, that is for sure.
     
  19. alice

    alice Senior Member

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    CAcfs, Do you use the MonaVie brand Acai as they did in the research article? Where is it available? Thanks

    alice

    MonaVie brand
     
  20. Lotus97

    Lotus97 Senior Member

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    Does anyone know how effective carotenoids (such as lycopene, beta carotene, zeaxanthin, lutein, and astaxanthin) are at reducing peroxynitrite? There seems to be several research studies, but I find it difficult to interpret the data. Astaxanthin is said to be the best, but it's also the most expensive.
     

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