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Neuromuscular damage from B12 deficiency - take action or wait for neurology appt.?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Pea, Jan 19, 2012.

  1. dannybex

    dannybex Senior Member

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    After discussing this CBS upregulation topic on several sites (including with several different researchers) they all basically told me that Yasko is incorrect regarding her theories. In fact, they all said that we need more sulphur, and more b6, (along with the proper b12's and folates) in order to correct the situation.

    Susan Owens looked into this as well, interviewed the top researchers in regards to CBS and Yasko's views, and said the same thing: She has no published papers to back up her claims, while the other researchers do, and they totally disagreed with Yasko's conclusions.
     
  2. adreno

    adreno 3% neanderthal

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    Ok, this is getting more and more interesting. A quick search on PubMed did confirm that taurine actually protects against hyperammonia, so it does look like Yasko is wrong.
     
  3. greenshots

    greenshots Senior Member

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    Yet this isn't what Dr. Vank, and a few other independent researchers & physicians (Dr. James Roberts MD), found in his CFS/ME study. I don't know all the particulars since I don't pretend to undertsand all of the information he wrote in his study findings that I skimmed on this site but it clearly said that his findings were consistent with Dr. Yasko's claims. I wonder if these researchers you speak of have done studies on this topic themselves or if its theoretical since this is what everyone thought it was supposed to do in the past.
     
  4. greenshots

    greenshots Senior Member

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    Dr. Yasko's concerns over Taurine have been more about the fact that the levels go too high and shouldn't be supplemented until you have supported methylation first. When you support methylation, taurine levels often naturally go up so now you have much higher levels and thats where it can be a problem. If levels remain low despite this support, she recommends giving Taurine. Everyone else tries to make things too cut and dried or black and white and unfortunately, the body doesn't seem to work that way. Its much more complex than that & there are many more variables at play. My doctor has tested this theory in her clinical practice (I guess she was initially a skeptic & followed Andy Cutler's guidelines)and found Yasko was right afterall. Of course, I told her this many times when she tried to put us on sulfur donors but she had to see it herself to believe it & the proof is in the pudding. All of the tests she checked were exactly like Yasko said they'd be. Unfortunately, scientists who don't actually work in the clinical realm and consistently see cause and effect in patient outcomes don't have the benefit of this experience and while Dr. Cutler is an excellent researcher, his internet practice is still limited. You won't find something when your not looking for it. Its time people put aside their pride and own theories to accept that we are all here to try to solve this mess. Unfortunately, I've noticed that ego often trumps patient needs no matter what medicine you practice.

    As for Cysteine mentioned in the other post. that's more about excitotoxin issues and that starts with Dr. Olney, Schwartz, & Blaylock who all clearly recognize that cysteine is an excitotoxin.
     
  5. adreno

    adreno 3% neanderthal

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    Greenshots, I don't remember anyone talking about cysteine? If you mean NAC, that's not exitotoxic. In fact, it has been shown to be neuroprotective.
     
  6. rydra_wong

    rydra_wong Guest

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    Therron, Inability to focus your eyes is a sign of electrolyte imbalance. I could not begin to guess what electrolyte(s) re out of balance, but they are when that happens. I used to get that every PMS in the laat few years before menopause, and I think it was because I did not make enough estrogen to hang on to calcium/magnesium anymore (I have the VDR defect so calcium was a problem w/o estrogen and estrogen prevents magnesium from being stripped from the NMDA receptors and used for the urea cycle. I got on DHEA and it prevented that. I offer that as an example that it need not be potassium throwing your electrolytes off. It could be ANY electrolyte: sodium, potassium, calcium, or magnesium. I used to get almost unable to think during PMS and would need salt to bring my mind back into focus. So it may have been that electrolyte as well. I used to HAVE TO eat salt like I had an uncle in the salt mine business (before high blood pressure) or I could not think. Adrenal problems will cause that - mine are ccaused by allergies. Or it could be potassium. And that is another reason why we need a simple test. If what you need is salt but you take potassium instead, you make it worse.
     
  7. Freddd

    Freddd Senior Member

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    Hi Adreno,

    Taking NAC is like playing Russian Roulette. For a percentage of people who have a corresponding amount of l-glutatmine in their bodies and they make glutathione with the NAC, unless NAC has a different cause for problem known as "NAC detox", they have "NAC detox" which is an induced folate deficiency of the most severe kind followed up by mb12 deficiencies starting in a week and adb12 deficiencies starting in several weeks. It can, by doing that, cause all sorts of damage including long lasting neurological damage. If you look at the side effects for Cerefolin-NAC and Deplin, you will see the symptoms of "NAC detox" with the Cerefolin-NAC and "No difference from placebo" for Deplin. Just because they don't reccognize a severe induced folate defieincy while takin Cerefolin-NAC doesn't mean we shouldn't. So it is very easy to protect ourseves from it. Don't take NAC or glutathione. And it is very important to recognize when it happens because it can worsen and maybe cause Subacute combined degeneration. The Russin Roulette was literal becasue SACD blows holes in the brain and/or cord, or at least the myelin, and NAC and/or glutathione can do that in some unknown percentage of people.
     
  8. Freddd

    Freddd Senior Member

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    HI Rydra,

    There can be any number of casues of inability to focus eyes, electrolytes, mb12 deficiency, adb12 deficiency, Methylfolate deficiency (hard to distinguish these three but depends upon whether it is muscular or neurological).

    The point is however is that the circumstances surrounding it matter. When mb12/metafolin etc is taken potassium drops in almost everybody. At least in the USA most people eat several times as much sodium as they need and not enough potassium. Sodium doesn't drop as far as I know from methylation startup. In connection with mb12/adb12/metafolin the odds are HUGE that it is potassium, near 100% probability. It could be other things too perhaps, but the most likely needs to be dealt with before it becomes a much bigger problem. A single dose trial with potassium can indicate whether it is low potassium. As this can come up daily for years of healing and heart arrythmias can occur in days, it matters. I get tested every 6 months and have had no indication of any electrolyte problems besides potassium. Now one time I had worked up on calcium and it did get out of balance, but the characteristics were different.
     
  9. rydra_wong

    rydra_wong Guest

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    Thank-you, Greenshots,

    I typed this once but fat-fingered something and lost the whole loooong post. Suffice it to say that my doctor, Dr. Roberts, www.heartfixer.com, gave me the Yasko book and video and made up a report from her on my genes, so I know everything you have typed here. Please dont type so much on my account. I was only unaware of any connection btwn VDR and COMT, and wonder if this is a recent discovery in the past 2 years.

    This advice is wrong for me. I very much have a problem with too HIGH homocysteine despite the CBS. I believe it is because DHEA corrects this hormone. With a boatload of supplements I can normalize my high homocysteine, normalize my horribly high blood pressure (184/117 even with every nutrient I ever found in a study to lower BP taken simultaneously), and take care of glutamate toxicity and panic.
    I do not have any sensitivity to sulfur or cysteine. I do have high taurine. I have high normal molybdenum. With this protocol, I have normal carnitine and do not supplement it. I do have high HVA. I find this:

    The link to this citation does not seem to work anymore:
    Following these promising findings, LeLord and colleagues were persuaded to further the research on vitamin B6 and magnesium for autism. 29

    By 1981, after completing a number of studies, these researchers concluded vitamin B6 used with magnesium was a breakthrough autism intervention for about half the cases they studied. 33,34 Urinary homovanillic acid (HVA) levels fell, an indication of improved metabolism of dopamine; and average evoked potentials (AEP), a measure of sensory processing ability, also were improved.34

    The paper goes on to talk about supplementing B6 in doses of up to 1000 mg. w/o sign of toxicity in autistic kids. [caution don't try this!]

    ---
    Dolo shares 12 of my mutations including CBS. I believe she said testing showed she did not have any issue with sulfite/ate. She did have pyroluria, a greater need for P5P and zinc. P5P protects the kidneys against glycation and homocysteine. I take an extra 50mg than most of you taking Freddd's protocol and this is part of getting my homocysteine down to 6.1. My homocysteine is 6.5 w/o th emB12 and aB12 so I think I don' t need it and don't take them anymore. It is true that neural Hcy is not measured so I may actually need these but I don't feel any different w vs w/o them and my hcy reading is great either way.

    ----
    I had my ammonia levels tested twice. Once after a normals day's eating, which is low protei. I tested with 40mg and then with 80mg. Neither put my ammonia even close to the upper range. I tested because no way am I taking charcoal (a carcinogen I believe?) and yucca, which abraids the stomach. I bleed eaasy and even a baby aspirin makes my stomach weep blood according to a doctor who looked with a scope testing for celiac. (Don't have it although I test + for wheat allergy and am sensitive to it).

    ----
    I did not follow Yasko's recomendations at all but stuck to my own (similar) protocol, which is a hybrid (superset) of Freddd's. She recommends hydroxy, I take methyl everything. I think the B complex I chose is WAAAAAAY better than hers, etc. But what she did for me is help me to understand how I can vary what I do take based on circumstances. I never even heard of the ornithine cycle before her, for instance. So like yesterday when I was afraid I'd destroy my kidneys or stroke out my bp was so high I knew to take cal/mag and mfolate and C and potassium water in addition to what I had taken that morning (hormones and antioxidants) and to get it in me really slowly so my slow kidneys had time to pee it out and I got my bp back down today. I can't have these up/downs - that's not good, but Thank God! I was able to figure out what to do to correct the problem.

    I should mention that I have several HCY mutations which could also affect my HCY levels.

    Thanks for your help. The main thing I do not know is anything re: genes that was learned in the past 2 years -- i had the Yasko indoctrination at that time. And with 18 mutations, the interactions are beyond me really. I try, but it's ghastly.

    Thank you for all your efforts. I will look into your doc, but right now I have to get some basics out of the way as I have an appt coming up with my doc and then I need to get my spring hormone levels tested (www.lef.org has blood tests on sale in the spring and I get a very expensive hormone lab so that's the time. It saves me 50% getting it through lef vs. at a doctor's).

    Rydra
     
  10. rydra_wong

    rydra_wong Guest

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    What stands out to me is prilosec (doesn't this stop sto,ach acidity?) as anything that stops stomach acidity impedes B12 digestion. I had heard that you can balance urinary Ph with nothing but Vitamin D. It seemed to be true in my case...I could NOT balance my ph until I figured out I had a VDR mutation and that I needed 7000IU D per day. I would ask your doctor to measure D3 in the blood. It should be 70 according to www.lef.org. Mine was as low as 25 and when I went overboard supplementing it went to 100 (which causes no problem other than urinary tract infection, which could be fatal to me as it destroys my blood pressure control). 70 is perfect and I personally would not use urinary ph to determine this (it does something funny regarding wraparound).

    Rydra

    P.S. Vitamin D also regulates methyl cycle genes, dont remember which, so you want to get it right
     
  11. rydra_wong

    rydra_wong Guest

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    I suggest you do a google/scholar search on this search string "testosterone CBS gene". You will find all kinds of info on this. Way more than was present when I first fdound it and it may regulate it in the wrong way. So mayne it is the estrogen made out of DHEA doing it, or maybe DHEA itself..

    Well here is one thing I found - that testosterone lowers homocysteine by improving the urea cycle. So, I don't know. Despite the CBS I have hih homocysteine problems and DHEA is part of fixing a lot of things for me:
    ArticleTestosterone regulation of renal cystathionine -synthase: implications for sex-dependent differences in plasma homocysteine levels
    Victor Vitvitsky,1,2 Anna Prudova,1 Sally Stabler,3 Sanjana Dayal,4 Steven R. Lentz,4,5 and Ruma Banerjee1

    Elevated plasma total homocysteine (tHcy) is an independent risk factor for ischemic heart disease and stroke. Epidemiological studies reveal that men have higher tHcy levels than women, but the mechanism underlying this sex-dependent difference is unknown. One route for intracellular disposal of homocysteine is catalyzed by cystathionine -synthase (CBS). Renal function is known to be an important determinant of tHcy, and, in this study, we demonstrate that renal CBS expression and activity in mice diminished approximately twofold after castration, whereas ovariectomization was without effect. The higher renal CBS activity in males (22.7 3.1 mmol cystathionineh1kg kidney1) vs. females (8.4 3.4 mmol cystathionineh1kg kidney1, P ? 106) in C57Bl/6J mice was associated with lower plasma tHcy levels in males vs. females, and this difference was exacerbated in Cbs+/ mice (7.7 1.9 mol/l in males vs. 13.8 6.4 mol/l in females, P = 0.005). Surprisingly, mammals exhibit a diversity of regulatory patterns for kidney CBS, with females exhibiting lower CBS activity in mice, higher in rats and humans, and being indistinguishable from males in rabbit, hamster, and guinea pig. Our data suggest that testosterone-dependent regulation of human CBS in kidney may contribute to sex-dependent differences in homocysteine transsulfuration.


    I will look into this more but you can do as well.

    I am NOT a stone former. I could eat my weight in calcium and would neverbe able to absorb enough calcium to form a stone. I have the VDR genetic defect.

    P.S. I took DHEA to make estrogen to regulate my bp and found it was the DHEA itself via studies which did this regulation for me.

    I also have 2 AHCY genes and have no clue what they do to me nor what to take to prevent that. They may affect the ability of CBS to drain Hcy however.
     
  12. greenshots

    greenshots Senior Member

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    Oops, the cysteine comment was based on another post so I'm scrambling things. I guess overall, I didn't do too badly though. Interesting about NAC though since I had no idea about all of those complications! I planned on taking a sprinkle for my upcoming methylation plan in March so I suppose I will hold off on that since my brain has enough holes in it already!

    Don't worry Rydra, I copy & paste things like that or I would still be typing it up. I never did learn to type well. I agree that Yasko isn't the holy grail and I tailor certain things to my intuition as well as my genes. Although to be honest, I don't know that you'd always be aware that it's too much ammonia or sulfur causing certain problems. For instance, your BP will go up with too much waste pumping into the system so all it takes is some high sulfur & ammonia donors along with maybe too much broccoli and cauliflower that week to hit a nice spike in your pressures or some extra chest pressure, fatigue, etc. This is because there's not enough BH4 to clean up what's there, let alone, clean up extra. Then it has to try and make NO to keep your blood vessels open and clean. Needless to say, we don't all get headaches or tremors, there are plenty of lovely symptoms to go around for all of us. I don't think she says not to take any but she does caution people about too much for those reasons. Honestly, it's hard enough though to keep track of the actual illness & then we have all the treatments, their side effects, and then stuff like the folate deficiency. I wonder how you can weed out a zinc deficiency from folate deficiency since they are so similar from the angular cheilitis, diarrhea, rashes, fatigue, and so on? It's a nightmare keeping it all straight to be sure!
     
  13. Freddd

    Freddd Senior Member

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    Hi Greeshots,


    Honestly, it's hard enough though to keep track of the actual illness & then we have all the treatments, their side effects, and then stuff like the folate deficiency. I wonder how you can weed out a zinc deficiency from folate deficiency since they are so similar from the angular cheilitis, diarrhea, rashes, fatigue, and so on?


    Somewhere about a year in I tried more zinc. I had been taking 15mg a day. It caused a LOT of startup and I titrated up to 65mg total. I cover zinc at the 50mg level as part of the basics because way too many people have some degree of deficiency. I try to elliminate it up front before it is an issue and so it can't be causing any such symptoms.

    That is why the basics. If a person takes 1 at a time looking for the next overt deficiency they will be years and years getting up to a basic level where they can heal 2 weeks in a row. I compare that approach to trying to hunt an elephant with a BB gun.
     
  14. rydra_wong

    rydra_wong Guest

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    Greenshots,

    Interestingly, if I take all my bazillion nauseating vitamins I have very stable bp...it matters little what I eat. I cannot eat HIGH salt, but I can do decent moderate salt. I just order naked food and eat out all the time and believe me if you eat out, naked food is not enough to get salt to 1200 mg or less/day (which is what I HAD to stay at before I fiured out DHEA would do it for me). The only thing I know of that really screws up my protocol is if I get a UTI. But NOT following my protocol is EXTREMELY HAZARDOUS. I need to make a truly exhaustive list of what each supplement does for me or I forget how critical each is and slum it to avoid nausea. I often only remember one reason why I'm taking something because when I read about something and they list the supplements necessary to fix it, I ignore all the ones I am already taking...thus many supplements have many purposes that are critical for me and I have forgotton some of those reasons I am taking them.

    I dont know about "too much waste" in the system. BP goes up with thick blood, such as caused by fat, sugar, or any food whatsoever in it, actually. Thus when I run into trouble my only recourse is to stop eating and drinking period. Which handcuff me as to how to fix it. And the answer is very slowly and choosing supplements wisely because I cant take alot of supplements if my kidneys aren't even getting rid of water.

    I can tell if I am short of zinc...I either get a zit or catch a cold.

    I need help with figuring out howto avoid nausea in my supplementing (and it is serious - I have thrown up from it before - when my doctor added an adrenal pill, it was the straw that broke the camel's back...everytime I took it I threw up all my pills). I also need hep with psychology - how t prevent myself from missing/skippig pills. These are stupid things to need help with, but we are all human. I am going to ask my doctor even though it's a poor use of such a smart man.

    Thanks.
     
  15. dannybex

    dannybex Senior Member

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    Hi Greenshots,

    Here's a quote from Rich's study, discussing the CBS issue:

    "The data in Figure 4 support Yaskos claim that the CBS C699T polymorphism significantly drains metabolites from the methylation cycle when there is a partial block of methionine synthase. However, during the treatment, though there continued to be differences in the values of SAM +SAH between those who had the polymorphism and those who did not, even those who were homozygous for this polymorphism attained levels of SAM + SAH averaging near the reference value after 6 months of treatment, without compensatory treatment for the presence of this polymorphism."

    I'm not certain exactly what this means, but it suggests that at least part of her theory is true, but perhaps -- perhaps -- her advice regarding the CBS gene is not necessary, and/or perhaps incorrect.

    ???

    Hopefully Rich will see this and comment. :)
     
  16. Freddd

    Freddd Senior Member

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    HI Rydra,

    I want to comment on the nausea with a baggie full of vitamins (I take 2 such baggies a day plus a smaller number of pre-meal supps and meds in the morning.

    The advice I read works pretty well. Eat 1/3 of meal. Alternate a few vitamins and a bite or two for next 1/3 of meal, then the final 1/3 of meal. Also, a guarantee of nausea and vomiting for me and friends to eat eggs or meat only with a bunch of vitamins. I need to have a mix of carbs, fruit, veggies and protein for my vitamins. Anything other than a mix, and large enough quantity, is nausea.
     
  17. dannybex

    dannybex Senior Member

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    I emailed Susan Owens, who gave me permission to repost her post (from the yahoo group "Trying Low Oxalates").

    One of the members was asking about Yasko's advice re b6, ammonia, sulfur, etc. Here's Susan's reply:

    When Yasko came out with this advice I cut and pasted it and sent it to
    scientists whose life work has been this area (which is definitely NOT the case
    with Dr. Yasko who just began to dabble with this area after going to two autism
    conferences...look at her CV).

    Scientists from this field keep telling me there is NO EVIDENCE for what she
    claims happens with the increased ammonia.
    One of my worries about this is she
    is testing urine ammonia, which can mean something completely different.

    One scientist I wrote said in response to Yasko's text:

    "In the case of reduced activity of cystathionase,
    this does not induce the enzyme even though there is excess
    cystathionine. I can see that the long term possibility if cystathionine is not
    rapidly excreted, as appears to be the case, is that you would get more cysteine
    and ammonia. However, the urea cycle is normally very active so this shouldn't
    be a problem while there is any liver function at all.

    As for the cysteine, in man ( as opposed to Martha Stipanuk's rats, which are
    quite different) the conversion of cysteine to taurine is very low. We get
    nearly all of our taurine from the diet.

    Your [her] case history may have reduced activity of cystathionine synthase, not
    a super-active variant, as this would give an accumulation of homocysteine and
    then higher methionine levels. If this is the case, apparently extra
    pyridoxine/vitamin B6 often helps.

    I can't see why she does not recommend sulfate donors as nothing happens to
    sulfate apart from reduction by gut bacteria
    (if autistic children have sulfate
    -reducing bacteria and I have never seen this proved, although they do exist in
    large numbers in ulcerative colitis). "

    Another scientist said:

    "Yes and I don't understand the basis for her assumptions. There is a common
    68bp insertion at position 844 in the CBS gene that is associated with lower
    homocysteine (modest increase in CBS activity) and has been most extensively
    characterized and studied. Much less common is the C699T she refers to. I can
    find no references to a 10 fold increase in activity with this SNP or for that
    matter much at all on the functional characterization of that SNP. I frankly
    doubt that there is a 10-fold increase activity with this SNP and would ask for
    this reference."

    {sco note: every scientist I wrote said this same thing, and when I asked for
    Yasko's references from some of her "disciples", they sent back an article about
    a ten-fold increase in activity that wasn't about this SNP at all, and I don't
    even think it was about CBS!]

    back to the scientist:

    " My understanding of regulation of cysteine metabolism in the paper she
    references is that when cysteine is high, there is a diversion to taurine
    synthesis but when it is low (as we see in most autistic children) the Km favors
    glutathione synthesis. We rarely see an increase in cystathionine which would be
    expected if CBS activity is high...A low protein diet would limit methionine
    which I would think would not be indicated for our kids. I have seen her slides
    on the connection between MTHFR 1298AC and BH4 and they are simply wrong
    - MTHFR
    does NOT reverse under physiologic conditions. "Spurious" logic could be applied
    to her assumptions."

    Paula, what I keep seeing on these OATs is evidence that CBS is upregulated
    because of oxidative stress
    (as Dick Deth has talked about and researches), and
    that upregulation is appropriate because if glutathione is depleted, the whole
    story starts to be over! Trying to make glutathione, B6 is being depleted and it
    is also needed for the step under CBS, which is clearly happening because
    2-hydroxybutyrate is elevating. The glycolic acid is the evidence that B6 is
    depleted.

    Reducing sulfur sources would only make this whole scenario worse, and do more
    to deprive methylation because once the switch is turned to make gluatathione,
    you stop doing so much recycling of methionine, and this ends up a sulfur drain
    on the body that may only be resolved when adequate B6 allows this pathway to
    succeed in making glutathione!


    Dr. Yasko also seemed very unfamiliar with the source of ammonia in URINE being
    related to the kidney's regulation of the body's pH. When I went to a nephrology
    conference in the last few years, I was amused to hear them say, it is a serious
    problem if the kidney's are not generating ammonia. The kidneys contain a cycle
    called the gammaglutamyl cycle, and this is used to recycle glutathione and
    regenerate cysteine that can be imported to cells. If plasma cysteine is low, it
    may most often reflect a kidney issue!

    But this cycle is invoked, and the enzyme GGT shifts when because of acidosis,
    it needs to start creating ammonia in the kidney to get rid of excess protons.
    There are lots of discussions of this on sulfurstories. So raised urine ammonia
    is generally ADAPTIVE
    and the question should be, is the body in acidosis?

    Yasko's model just leaves out a lot, and according to everyone I've asked whose
    career has been in the areas she "teaches" she just has a lot of this chemistry
    wrong. If you don't see the same thing taught in the literature, there is a
    reason it is not there! "In the mouth of many witnesses let every matter be
    confirmed."

    That's Owen's explanation/understanding of the situation. It is confusing to sort all this out! Not sure who's right, but it seems like these other scientists at least have papers published to back up their claims, while Yasko does not. Again, it would be great if Rich sees this so he can explain it further.
     
  18. adreno

    adreno 3% neanderthal

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    Dannybex, thanks for posting this. I trust the hard data over Yasko's theories.

    I will continue my sulphur supps and moderately high protein diet.
     
  19. greenshots

    greenshots Senior Member

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    Again, I certainly don't think that Yasko is the end all or the Holy grail of knowledge but she's sure been right time and time again for me, my kids, and about 7,000 other people so I have to ask a question here:

    Are we trying to win a debate or are we trying to find answers so we can get better? If what everyone was already doing was working so well, we wouldn't need to look for other other answers, right? I mean, Adreno, if I may use you as an example since you wholly support staying on high protein despite having the CBS defect, if this was working so well for you already, why come on as a newer member and search for healing? I'm here simply out of weariness. I know what I need to do but after doing it with two children (I pray the 3rd stays healthy), I'm just plain worn out. As much as I respect Dr. Yasko, I also know that there are many paths to Rome and a shortcut there would be nice. But I'm also not looking to go off course completely since I know this works extremely well. Unless of course, someone has the magic bullet that fixes it all with MUCH less time and money :) Also, Danny, I know you're just providing opposing information for enlightenment but believe me, I studied this exhaustively several years ago when I was struggling whether to believe all of these so called experts and my son was autistic, despite all of the DAN! doctor's and Andy Cutler's wonderful work (I really do respect him & believe he has many valid points).

    But it wasn't until we got to Dr. Yasko that he healed and I mean healed 100%. You would never know he had anything--ADD, ADHD, Autism, Aspie, etc. He isn't even quirky! Neither is my daughter! Its truly unbelievable and made this old ICU nurse more open-minded and very, very grateful. What I like about Dr. Yasko is that she is newer to this, coming 10 yrs ago without any preconceived notions of what should "normally' happen or what "couldn't" be done. She never assumes people have "normal" anything, as well she shouldn't when working with such sick people day in & day out. I spoke to her father in the early days (when he was alive) when she still saw patients. She actually stumbled into this accidentally, after treating a woman for Crohn's successfully, this lady wanted her to treat her daughter's bowel issues (only her daughter was also autistic). But after fully treating her health issues, she was no longer autistic and honestly, she was shocked! She knew nothing about autism since she worked with adults who had Gulf War, ALS, CFS/ME, FM, MS, parkinson's, etc., and she really didn't want to work with kids. It just wasn't her thing so she tried to get anyone else she could to take it on and called and wrote to all of the known autism "experts" to relay what she did but no one was interested! Can you imagine? No one was interested! Here she was, a successful biochemist who was already able take an early retirement so she could "dabble" in naturopathy and just take care of people in her local town and she came to this fork in the road. To be fair, by that time autism had only struck 1/400 children, not the 1/10,000 of my youth but not the 1/80 they now project to have it either. So she decided to take it on and worked to figure it out and has had to start over quite a few times in the process.

    In fact, early on, she believed the sulfur thing too and so we had him on all kinds of sulfur donors and weren't watching protein at all since she thought that the MTHFR's were the main issue. But when she came out and said "I was wrong, just because they desperately need sulfur donors doesn't mean they can actually handle them until their CBS is under better control; then they can have them". She didn't make a bunch of excuses or blame all the others out there who promoted this and she didn't try to stick to her theories even though she knew they weren't working for a fairly big group of the sickest kids and adults. She just said, "I was wrong" and made changes. You see, she isn't so wrapped up in her ego that she has to hold onto these theories as so many other scientists have in the CFS & autism realms. Yet strangely, she doesn't seem to get angry when someone lambastes her for believing otherwise and if she is proven wrong on something, she simply admits it. When she doesn't have the answer, she says so and after working with a zillion MD/DO & PhD's in the past, I find that those who can admit they don't know or were wrong tend to be the wisest doctors (and just plain people!) while those who harshly criticize and scoff at other researchers or doctors are either not terribly bright or simply too wrapped up in their egos so can't see the nose on their face. I know for a fact that Susan Owens and Dr. Cutler have both harshly criticized Dr. Amy and even though I still agree with many of their findings, I can see that they have too much wrapped up in their own theories and appear to have lost some of the focus on what matters; healing the non responders that are out there in droves! This doesn't make them bad people, it just makes them human and as such, vulnerable to pride and staking claims. But I also see this with autism moms or CFS patients as though believing in a particular theory gets us to the finish line faster. I sure wish it did but nothing could be more mistaken. And, for those who have found their finish lines, such as Yasko, Freddd, and a few others, I think we should probably sit up & take notice.

    On several occasions, I've seen that Yasko accepts her humaness & it gives me comfort to know that when she finds information that proves any later theories wrong, she won't try to hide them from patients but will come right on out and discuss it. As for the statement above about that scientist who said there is no evidence of the CBS working faster, that's what Dr. Vank's findings confirmed, as shown in your copy & paste. Dr. Yasko prefers to slow the CBS down with an RNA & support the pathway whereas Dr. Vank found that you can still sorta get around it without that but it'll take longer and the pathway will have to be well supported. While it doesn't prove or disprove the ammonia or sulfite issue, it does show that it works faster, even though he might be able to overcome that once the methylation cycle is FULLY supported.

    As for the other comment that it shouldn't be a problem because the urea cycle is "normally" efficient enough to overcome that, well, that's just a thoughtless statement by whoever said it if you think about it. I mean, who has studied CFS/ME and autism and found that the urea cycle works well? I would think that out of a bazillion studies on that, just the ones by Dr. Pall and Dr. Kane should illustrate that one fairly well. It does't work well in those with chronic disease which is why we get sick in the first place! That's why I like Dr. Amy's approach. She doesn't assume that anyone sick has a normal anything and she really shouldn't. Why a researcher would say that and hold onto their own notions so dearly is beyond me, really. But I suppose that's just human nature.

    Ultimately, we can all keep doing exactly what were doing and stay sick all we want. It sure doesn't hurt Yasko's feelings to thumb our noses at her. Just like it doesn't hurt Freddd or Rich if we ignore their suggestions and think otherwise. For that matter, which of those scientists above would agree with their theories? I think we have to study what we are capable of studying and take a bit of this and a bit of that and couple that with trial and error, unless you have the genes. But if we have the genes and just ignore a decade's worth of research conducted by the only one I've ever heard of who has actually studied this area in the lab along with treating some very sick patients who have them, I think were doing ourselves a horrible injustice. Yet the researchers above are doing it on some preliminary lab data alone. No doubt about it, Dr. Yasko sure doesn't have all the answers but she has come to terms with many of the issues in this area through her own trial and error. My doctor has a saying that used to kind of bug me but I'm growing more found of it. It goes like this "The person who says it can't be done, shouldn't interrupt the one doing it".

    Just some food for thought. I also appreciate the food that I've received in return. I think this site is great for revealing all kinds of different experiences, views, and theories that just may save the next generation a lot of misery.

    Sincerely,
    Angela
     
  20. dannybex

    dannybex Senior Member

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    Hi Angela,

    You're correct -- all I'm doing is trying to provide other viewpoints, so people can see that we're all human, we all don't have all the answers -- including the scientists/researchers -- so sometimes it can be "dangerous" (that isn't exactly the right word) to put anyone up on a pedestal and think there is only 'one way' to get out of this mess.

    I'm very happy to hear that your son did so well using Yasko's protocol -- truly. But I guess I haven't seen the openness that you have w/her. For example on her forum, I tried to ask why she considers 'sulfate' to be harmful, when none of the other experts do, and all I got was answers that were copied and pasted from her past responses, which -- basically -- didn't answer the question. I tried several times, and just kind of got the run around, like folks were afraid to contradict or question her. I haven't seen her admit that she might be wrong on the CBS issue or especially regarding her claim that sulfate is "toxic". I could never get an answer or explanation on that one.

    The same thing happened on the Yahoo yasko forums. No one would answer 'tough' questions, except via backchannel, which was kind of troubling.

    I do agree that a lot of researchers can become too latched on to their theories/hypothesis (Cutler and perhaps Owens too), so I'm glad to hear that Yasko has changed her views when necessary. Maybe she'll be doing so again??? :)

    I do very much appreciate when Rich makes changes and explains why he has made them. He does disagree somewhat with Yasko when it comes to lowering protein, as it's his conclusion that folks with CFS use or need more protein for fuel. I'm not sure I understand your point about his protocol taking longer to resolve CBS issues -- I think his study w/Dr. Nathan was only 3 months (or 6 months?) -- I can't remember, but that doesn't seem too long. Anyway, Rich's hypothesis is based on Jill James published work as well, some of which also contradicts some of Yasko's conclusions. (She also found that the CBS mutation was an 'adaptive' response, and normalized with mb12 and folinic acid.)

    And perhaps I'm misinterpreting your statement above, but I don't think it's fair to suggest if we don't follow Yasko's advice that we will necessarily "stay sick". Certainly what works for some folks doesn't work for others (some have noted that they have the CBS polymorphism and high instead of low homocysteine for example), plus there may be many, many other factors involved besides these genetic expression issues. And there may be other ways to get around them as well.

    Anyway, just my two cents -- my 'food for thought'. :)

    Wishing everyone the best! :)

    Dan
     

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