The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Tips on conquering sulfate?

Discussion in 'Genetic Testing and SNPs' started by bigmillz, Jan 31, 2016.

  1. bigmillz

    bigmillz Senior Member

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    Hi everyone, just got my sulfite and sulfate strips in, and have begun the diet. I'm looking for tips on:

    1. Easier ways to eat out and avoid high thiol ingredients. So far I'm trying to just say "no dairy, nuts, onions - allergy" to avoid the majority of stuff that can be snuck in. I live in NY, so restaurant eating is really an unavoidable part of life (and probably one of my favorite things). I also traditionally use a LOT of peanut butter on a daily basis, and I'm hoping swapping that for almond butter will help more than anything.
    2. In general, how long does it take to start seeing a drop on the sticks? The reason I ask is so that I know how soon I can expect a drop, so that if I don't, I know I have to make more changes.
    3. Edit: Will the sulfate level go up before it goes down? I just tried one tonight (usually do it in the morning), and hit a solid 1600, yet feeling pretty great.
    4. I haven't found any supplements in my research that can help with clearing out sulfates - am I correct in this?

    Some relevant numbers...my sulfite sticks have read 0-25 the past few days, and sulfate has been around 800-1000. Here's my methylation details too:
    [​IMG]

    I'm hoping that my "lighter" CBS mutation will allow me to be a little less restrictive, but we'll see. FWIW, I did try starting on Jarrow B Right, mb12, and mfolate before this, and didn't tolerate it too well. Thus I've decided to take a stab at the CBS matter.

    Thanks for any suggestions!
     
    Last edited: Jan 31, 2016
  2. Valentijn

    Valentijn Senior Member

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    @bigmillz - Good news. CBS A360A has no impact at all.

    Bad news - sulfur strips aren't appropriate for medical use. They're designed to test industrial water systems, and normal fluctuations in pH will throw off the results.

    Why do you believe that you have a sulfate problem?
     
  3. bigmillz

    bigmillz Senior Member

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    I've been hoping A360A is of little impact, but the BHMT thing is what really caught my attention. However, when I started mb12 and mfolate, I had a lot of trouble tolerating them after the first couple of days. I figured I'd give this a shot.

    I notice you often point out the sulfur strips being unsuitable, but many others recommend them, and have seen progress in using them. What do you suggest?
     
  4. Valentijn

    Valentijn Senior Member

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    The BHMT SNPs listed don't have much impact either. BHMT-02 has none at all, and BHMT-08 is listed backwards. +/+ is the better version.

    A lot of people don't bother to look into things, and just repeat what others are saying. I've looked into the strips, and there were no medical versions at the time, just industrial ones containing the caveat that abnormal pH makes the results unreliable.
     
  5. bigmillz

    bigmillz Senior Member

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    Everything I've found lists T as the risk allele for BHMT-8. Where do you see it listed as C?

    I did a little more research on the Quantofix strips, and they do suggest them for beverage taste testing, as well as water mixing in concrete production. Wouldn't those be moot as well if pH were a factor?

    Appreciate the input.
     
  6. Valentijn

    Valentijn Senior Member

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    Have you found an actual source? Or just stuff tracing back to Yasko, with no citations? If you find any research saying that "+/+" is actually a riskier version, I'd love to see it.

    There's a link to the paper at http://forums.phoenixrising.me/inde...-bhmt-and-bhmt2-variations.24512/#post-456007 and some more discussion in general in the thread.
    No, in both cases they are looking to avoid minimum levels of sulfates, and would be using water from a consistent source. The pH would not constantly be fluctuating throughout the day as it does in urine.

    And it remains that these strips are not intended or certified for medical use.
     
  7. bigmillz

    bigmillz Senior Member

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    Yes, they're definitely all Yasko-related. Even Promethease links to a Yasko source. I did spend a few minutes in your link, but was unable to interpret a risk allele from the chart (rs651852 at the bottom row):
    Screen Shot 2016-02-01 at 11.47.00 AM.png

    I'm taking your input, and I'm asking the manufacturer what kind of pH swings their strips are designed to take. I'll report back.

    With all this said, what procedure or process worked for you?
     
  8. caledonia

    caledonia

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    I followed the CBS protocol on Heartfixer's site, along with the Free Thiol list and was successful in treating CBS issues so I could tolerate B12. Molybdenum is a key supplement.

    Since mercury causes CBS to express, consider that you may have mercury toxicity, despite whatever your SNPs say.

    There is more information in my signature link.
     
  9. bigmillz

    bigmillz Senior Member

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    Do you think that molybdenum is important even if sulfite readings (disregarding the pH debate for a moment) are minimal, and sulfate is up there? I.e. SUOX appears to be working just fine.

    I feel there's no harm in trying. How long before you saw a reduction in sulfate levels while on the diet?
     
  10. Valentijn

    Valentijn Senior Member

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    This is pure speculation.
     
  11. Valentijn

    Valentijn Senior Member

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    A few minutes is not enough time to read the study, or understand the way they are presenting the data, unfortunately.

    There's a more relevant line a little lower, which is looking at that SNP in regard to folate:
    rs651852 T/C 0.45 0.08(0.03) 0.0030
    T is their + allele, and C is their - allele. .45 (45%) is the prevalence of the T allele in those studies, which gives C a .55 (55%) prevalence. 0.08 is the effect size, with a standard deviation between 0.03 and 0.11.

    That means that one allele was found to increase folate levels by about 8%, which is a pretty modest effect when compared to the common MTHFR mutations, where folate production drops by up to 70%.

    To understand if the effect size is being reported based on changing from + to -, or from - to +, we can look at this sentence in the main body of the paper:
    "The most significant SNP was rs4654748 (p = 1.21 × 10−8), in which the presence of the C allele was associated with 1.38 ng/mL lower vitamin B6 concentrations (Table 2)."
    Table 2 lists C as the + allele for rs4654748, with a negative effect size indicating lower B6. So now we know that the effect being listed in their tables is in reference to the + allele.

    Thus their + allele (T) for BHMT-08 (rs651852) results in slightly higher folate levels. And higher folate levels are associated with better methylation, lower (normal) homocysteine, and reduced risk of birth defects.

    Methylation has been trialed in ME patients, and the benefits wore off after a bit. My approach to being treated for ME has thus far been to be tested for pathogens and treated for the ones that I was diagnosed with (Lyme and Bartonella). I inject a very high dose of hydroxyB12 twice per week to help with pain, but folate makes me feel like crap after a few days, so I don't really do anything resembling a methylation protocol.

    Mostly I follow the research, and avoid fixating on any particular cause or cure. It's better to see what the research says, and at least see what's plausible. That's how I quickly found out that most of Yasko's claims (and the claims based on hers) are unsubstantiated and sometimes completely contradicted by the available research.

    Unfortunately that means that the whole methylation movement is a huge mess, and no one's claims can be taken at face-value.
     
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  12. caledonia

    caledonia

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    I'm confused why you would be measuring sulfite. The protocol calls for measuring sulfate. A consistent measurement of 800-1000 is a little high and would suggest you're not detoxing sulfur as well as you could be.

    Also - why are you doing the protocol - are you having issues with sulfur foods and supplements, or are you having issues tolerating methyl supplements?

    If not, you can probably skip this step.

    If you think SUOX is working fine, it wouldn't hurt to take a maintenance amount of molybdenum, such as 25mcg. Our soils are very depleted in trace minerals such as molybdenum.
     
  13. bigmillz

    bigmillz Senior Member

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    Makes sense - I didn't interpret the rightmost columns correctly. Although when frequency of the alleles is reported, how do we know that the less prevalent one is the risk one? Is this always the case? Or is that where we factor in the effect value? I.e. in imaginary SNP rs123456, allele A is prevalent by 95%, but the effect is -10% on lifespan, thus most people have the risk allele and will have a 10% shorter lifespan?

    That said, why does Yasko insist that rs651852 T/T is undesirable? Has anyone ever asked her about this and gotten an answer? I can't see flipping a few SNPs around as being of much benefit to her, at the expense of her credibility.
     
  14. bigmillz

    bigmillz Senior Member

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    Mostly curiosity and to see if I showed high levels of it. For $30, it's affordable data to collect, that'd hopefully help me to make more educated decisions on SUOX and all that jazz.

    I can't tell yet on sulfur foods really (but I do eat a ton of garlic, dairy, and peanuts), but I have had trouble with methyl supplements in all trials. I tried mb12 years ago, without knowing any of the stuff on this site, and noticed I was really irritable whenever I took it. A day after stopping, I'd be great. Back then I was taking 5mg tablets though. This time around, it got dicey even before 1mg. I then decided to do a little more research into CBS and BHMT, which I had ignored. I admit I could've scaled the mb12 and methylfolate slower though, and maybe tried it without the Jarrow B Right complex.

    I actually just realized that oats are pretty high in molybdenum - I should be getting a couple hundred mcg daily from the oats I eat. I'm going to stop adding any extra for now.
     
  15. bigmillz

    bigmillz Senior Member

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    I did receive a reply back from the manufacturer of the Quantofix sulfate strips regarding pH sensitivity I figured I'd share:

    And a quick Google on urine pH:

    Sounds like the sulfate sticks should measure most folks' urine fine, no?
     
  16. Valentijn

    Valentijn Senior Member

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    The more or less prevalent doesn't matter in the way in which they report it. We just know that the effect shown reflects their designated "+" allele. But yes, if 95% of the population has the "risky" allele, it's a lot more sensible to think of it as the minor allele being a beneficial variation instead.
    I don't know ... I've never seen a good explanation. Her forum only allows positive discussion, so citing contrary research and questioning her reasoning would probably not be tolerated. My best guess is that the panel of SNPs she uses was the best she could get from whoever provides her with the testing service.

    The research she seems to be relying on for some SNPs (notes on images of the front page of the papers) has been badly interpreted, though I couldn't guess if it's deliberate or not. The SUOX SNP she tests for, for example, is a synonymous variation which has no impact, but there were some notes regarding an adjacent mutation (in the same codon) which would result in a pathogenic change in the same amino acid. Did she settle for "close enough" or did she get confused by the different SNPs having the same position on the coded amino acid? And the CBS C699T claims of a 10-15x upregulation seem to have been inexplicably extrapolated from a study where half of the entire CBS gene was removed in a yeast.
     
  17. bigmillz

    bigmillz Senior Member

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    This right here is enough evidence for me.

    Have a link to this? Just curious to read more of the study, that's nuts if it's based on a yeast.
     
  18. bigmillz

    bigmillz Senior Member

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    Quick update - after about 5 days without sulfates, I've noticed a HUGE difference:
    -Much better mood, been doing a lot more this week, and with a noticeably more positive attitude (validated by friends, one who historically only notices big changes)
    -Acne that has been present on my neck, face, and back has mostly vanished - it's been there for years. Even after shaving with a nearly-worn razor...this is unheard of for me
    -I always wake up every night to pee, hasn't happened once in the past 4 nights
    -Continuing to use the sulfate sticks, still reading around 600 every night, and 1200 every morning. Urine pH is 6.25-7.0

    It's been such a huge improvement, I'm determined to verify if it's something besides sulfur before proceeding further. I plan to introduce sulfites back into my diet (mainly garlic & onions with my usual meals) after the weekend, minus peanuts and dairy. Then dairy a week later, then peanuts the next. If it's sulfur, then it's back on the diet, in a little stricter manner too.
     
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  19. roller

    roller wiggle jiggle

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    you may be new to this roller coaster business... welcome aboard
     
  20. Valentijn

    Valentijn Senior Member

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    bigmillz likes this.

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