1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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  1. triffid113

    triffid113 Day of the Square Peg

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    I cannot search for BH4 (because it says the string is too short, which makes it IMPOSSIBLE to search for SNPs and interesting molecules here) so I am starting a new topic.

    I have 3 genes that cause it to be hard to make BH4 and for me to use it up faster. BiancaS who has most of the same genes I have (18 defects) was found to be low BH4 and put on kuvan. I tested my father who is a kidney dialysis patient and he has NO DISCERNABLE BH4. This is technically PKU but dialysis must be taking out some of the phenylalanine (it takes out 30g of protein each dialysis session). From biochemistry, BH4 is REQUIRED to make urea! Yet no kidney doctor I have asked (I have asked EIGHT) has ever heard of it. Further, I cannot find a doctor that knows what this is and even cares that my Dad has none.

    I wanted to clue all of you in who have BH4 issues that this can effect your ability to pee productively. I also wanted to see if anyone knows anything new about BH4. And lastly, wondered what kind of doctor might have a clue about BH4?
     
  2. ahmo

    ahmo Senior Member

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    triffid, My BH4 info comes from mthfrsupport.com and Amy Yasko's workbook. (free ebook: http://www.holisticheal.com/autism-pathways-to-recovery-book-and-workbook.html) I haven't been around here long enough to know if Yasko's book is standard resource. Squelching ammonia appears to be the primary strategy for increasing BH4. Lysine and yucca are the 2 things recommended for this. Good luck finding an MD who knows anything about this. ahmo
     
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  3. Hip

    Hip Senior Member

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    You can use Google to search Phoenix Rising for BH4: see here.
     
  4. dbkita

    dbkita Senior Member

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    Anyone know a good way to get lysine without taking lysine monochloride supplements? That HCL plays havoc with my guts.
     
  5. ahmo

    ahmo Senior Member

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    I take it orally, and I also add it to my footbaths, along w/ bentonite clay, charcoal, mag oil. Don't know of other forms.
     
  6. dbkita

    dbkita Senior Member

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    How much lysine do you take orally? Also how much yucca do you take ? Just curious.
     
  7. ahmo

    ahmo Senior Member

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    I'm taking about 110mg lysine orally (NOW lysine powder), using twice that in footbaths. it's cheap.
    Yucca I'm taking 15 drops about 2 hours after AM & PM meals. I'm using tincture, which tastes yucky, since on GAPS diet and avoiding starches. cheers.
     
  8. dbkita

    dbkita Senior Member

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    How much yucca does that translate into? Or do you have link to what you take?

    Also why do you take it after meals? I thought most advise taking it with a high protein meal.

    Btw how much protein do you get a day? 110mg of lysine seems very low. You get a lot more in a hamburger patty. Just curious.
     
  9. ahmo

    ahmo Senior Member

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    Not sure the equivalent, it doesn't say on bottle, just recommends 15-30 drops. There are several choices at iherb, I've been using the Eclectic Institute brand. Yes, it's advised w/ hi protein meal. But since I'm taking tincture, not the powder, I'm taking it when I take my aminos. I reckon it's still mopping up ammonia. And re lysine dose, I've not seen recommended doses for this usage. I dose according to self-testing, and I now see that I was incorrect in what I first wrote. It's 1.10 gm, actually elemental 860 mg. AM and PM. Dyscalculia again. I'm eating about a palm full of meat twice a day (6 bite-size chunks). cheers.
     
  10. triffid113

    triffid113 Day of the Square Peg

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    Thanks, I had not heard about lysine.

    However my father died tonight so no chance to raise his BH4 and see if it would help. I thought he had more time in him. He had 2 heart attacks today, well 3...the last time we did not resussitate...the doctors broke his ribs on the 2nd ressussitation and that was all we could take.
     
  11. dbkita

    dbkita Senior Member

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    I am so sorry to hear that triffid. I hope you and your family can find some peace. Take care and God bless you and your family.
     
  12. ahmo

    ahmo Senior Member

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    My condolences triffid. My best wishes as you and your family deal with this loss. ahmo
     
  13. cph13

    cph13 Senior Member

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    Sorry for your loss Triffid. You and your family are in my thoughts.
     
  14. Lotus97

    Lotus97 Senior Member

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    triffid113
    I'm sorry to hear about your father
     
  15. nandixon

    nandixon Senior Member

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    Just dissolve lysine hydrochloride (HCl) powder in water, or empty the contents of a capsule into water, then neutralize with sodium bicarbonate (i.e., baking soda). Bubbles of carbon dioxide (CO2) will form as the HCl is neutralized. Just as a rough example, dissolve ~1/8 tsp of Source Naturals brand L-lysine HCl (~340mg) in ~1/4-1/2 cup of water, then directly add ~1/16 tsp of baking soda. Swirl or stir for a few seconds to mostly react the ingredients, then drink. You might prefer a different ratio (by volume) of baking soda to the lysine HCl, for example 1:1 instead of 1:2. I use lysine not for tetrahydrobiopterin (BH4) purposes, but simply to balance the amino acid profile of foods containing disproportionately large amounts of arginine (e.g., walnuts, almonds, etc). I also use baking soda to neutralize ascorbic acid (same 1:2 ratio by volume) to make sodium ascorbate, since freshly made tastes much(!) better to me than when it's bought preformed.
     
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  16. dbkita

    dbkita Senior Member

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    Excellent idea. Thanks.

    Just curious how much lysine do you supplement with? I have also been thinking of lysine for some pesky viral infections.
     
  17. nandixon

    nandixon Senior Member

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    I use the ~340mg amount I mentioned for every 1.5oz of nuts* I consume. (Sorry to mix weight units.)

    *Edit: Nuts, seeds, grains - I basically use additional lysine any time the food or combination of foods I'm eating isn't properly balanced between arginine and lysine. (I usually try to balance foods to avoid taking extra lysine.) I don't have any viral issues (that I'm aware of). I'm just trying to make my protein sources as complete as possible since I eat a mostly vegetarian diet.
     
  18. nandixon

    nandixon Senior Member

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    An alternative way to increase BH4 levels, besides reducing its consumption by ammonia, is to reduce its consumption in the production of neurotransmitters by using the prescription monoamine oxidase inhibitor (MAOI) phenelzine (Nardil). Nardil prevents the breakdown of neurotransmitters and thus reduces the amount of BH4 that must be used to make those neurotransmitters in the first place.

    I use only 7.5mg (1/2 tablet - tricky to cut) first thing in the morning drunk with ~250mg sodium ascorbate in a large glass of water (I crush the very unpleasant tasting half tablet in my mouth with some of the liquid). I additionally have to use at least 200mg of caffeine tablets - taken with or after breakfast (and often times more in the afternoon, e.g., 100-200mg extra) - to offset the paradoxically tiring effect that Nardil initially has... It's actually ultimately energizing.

    Nardil, even when taken in the morning in such a small dosage, causes sleep problems for me at night that are overcome by using 0.25mg (1/2 tablet) of clonazepam (Klonopin) together with 500mg niacinamide (which reduces the amount of Klonopin necessary), and magnesium citrate (e.g., 200mg or more). (I also take these with sodium ascorbate in water.)

    Nardil (and caffeine) in the morning, and Klonopin (and niacinamide and magnesium) at night, have given me some semblance of a life, after many years of not having one. I've been doing this regime for some 3 months now with very consistent results. (I'd tried Nardil a couple years ago with only an initial temporary success because I didn't understand how to use it.)

    Nardil has previously been explored in published literature trials for CFS / ME with only modest results. I'm not sure that the researchers were aware of the apparently critical (at least for me) importance of caffeine, though.

    Note that Nardil, by increasing the levels of BH4, is indirectly acting as a potent antioxidant.

    I've not noticed any food interactions using the 7.5mg amount. Unfortunately, many doctors are reluctant to prescribe MAOI's, since when they first came out (many decades ago), a number of deaths occurred in patients taking much larger dosages who also ate preserved and/or other contraindicated foods (when the food interaction problem wasn't initially understood by the medical/scientific community). Hypertensive crisis I think is the primary worry, and my blood pressure, like the majority of people with CFS / ME, runs low, making a problem less likely anyway.

    Nardil is very definitely NOT acting as an antidepressant in my case, and I doubt that 7.5mg would be considered a therapeutic antidepressant dose (typical dosage in depression is more like 45 to 90mg, if I remember correctly).
     
  19. ahmo

    ahmo Senior Member

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    I've been on this protocol for about 4 months. Just submitted samples for urine comprehensive testing and metals, so will have internal levels in a few weeks to verify whether its effective.
     
  20. Lotus97

    Lotus97 Senior Member

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    I've been wondering about this. I was concerned that I'd change other properties of an amino acid besides just the pH. So if I added a buffering agent to other acidic amino acids such as L-carnitine or some other acidic substance such as alpha lipoic acid that wouldn't be a problem?
     

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