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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Give p5p a try

Discussion in 'General ME/CFS Discussion' started by drob31, Aug 12, 2014.

  1. drob31

    drob31 Senior Member

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    I know these things take a while to have an effect, and I'm posting about all my experiences in nearly real time.

    However...

    This is only day 2, and I've only taken it 3 times. Today I took it twice, and every time I take it, it turns a light switch on in my brain and gives me energy. This effect lasts for 3-4 hours, and hopefully longer if it can build up.

    I have elevated krytopyrolles, so I should theoretically be low on b6 and zinc, which I'm both supplementing with. I was taking regular b6, but it doesn't have the same effect as p5p, which tells me I'm missing the proper co-factors, or that my methylation is screwed up and can't convert it properly. In either case this is what I'm taking:

    Country Life p5p: 50 mg (2 x day: morning and evening)


    Signs of Vitamin B6 deficiency

    "Fatigue, a frequent symptom of many disorders, is a symptom of B6 deficiency. Other signs include cheilosis (sores or cracks at the corners of the mouth), glossitis (swollen red tongue) and stomatitis (inflammation of the mouth, oral ulcers). As mentioned earlier, the presence of depression, cognitive dysfunction and small cell type anemia (hypochromic, microcytic) are also suspect in a vitamin B6 deficiency."

    http://www.naturalnews.com/023586_vitamin_B6_deficiency_nutrition.html#ixzz3ADuaxpWC

    "In its role as a vital coenzyme, B6 is involved in the synthesis of neurotransmitters including serotonin. B6 is required to form serotonin from the amino acid tryptophan. It is also required to synthesize dopamine, norepinephrine and GABA (gamma amino butyric acid). "Early symptoms of vitamin B6 deficiency include depression and confusion" according to Eleanor Noss Whitney and Sharon Rady Rolfes, authors of the text Understanding Nutrition."

    http://www.naturalnews.com/023586_vitamin_B6_deficiency_nutrition.html#ixzz3ADtnSeNQ
  2. PeterPositive

    PeterPositive Senior Member

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    I have the same problem, elevated HPL and kryptopyrroles, and I have started to add more zinc and P5P.
    I am around 50mg of both ... Probably not high enough but I need to go slowly ... When I started zinc a year ago even 5mg wher too much for me.

    Out of curiosity how high are you kryptopyrrole (or HPL) levels?
  3. drob31

    drob31 Senior Member

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    How do you know 5 mg was too high for you?

    My test was 13.4 (elevated), however right now I believe the sample did not arrive frozen. I may need to do it again.
  4. PeterPositive

    PeterPositive Senior Member

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    It was upsetting my digestion pretty badly.
    At the time my methylation was in a sad state, now it's running a little bit better (although still below sufficient range) and I can handle ~50mg without side effects.

    In my test kryptopyrroles was 19.4 but HPL was even more out of range (387, range: 15-250)

    cheers
  5. drob31

    drob31 Senior Member

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    What site did you order your test from? Mine didn't measure HPL, only kryptopyrolles.

    When you say 50mg of zinc, do you mean elemental zinc, or a bound form of zinc? Because 50 mg of zinc as zinc gluconate is only 13.4 mg's of zinc total.
  6. PeterPositive

    PeterPositive Senior Member

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    I live in Europe so I tested with this lab:
    http://www.europeanlaboratory.nl/

    which is a branch of this lab in the US:
    http://www.hdri-usa.com/

    They have a test that measures both values: http://www.hdri-usa.com/tests/kryptopyrrole.html

    Yes I mean elemental zinc. I take one 30mg OptiZinc tablet (zinc bound to methionine) + 3x 8,5mg Zinc-Carnosine capsules, for a total of around 55mg.

    cheers
  7. PeterPositive

    PeterPositive Senior Member

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  8. drob31

    drob31 Senior Member

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    Cool, any reason why you use that combo? I have OptiZinc as well, but it's only 23% elemental zinc. So 30 mg's could be 6.9 mg's of elemental zinc.


    So if I'm shooting for 50 mg's of elemental zinc, I would need about 6-7 of them.
  9. PeterPositive

    PeterPositive Senior Member

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    I have lots of GI problems and Zinc-Carnosine helps with that. I was taking 3 x 8.5mg before testing for HPL so I kept the same supplement and dosage and added the OptiZinc.

    The product I am using is this: http://www.supersmart.com/en--Minerals--L-OptiZinc-30-mg--0503
    Each tablet is 150mg delivering 30mg of elemental zinc.

    cheers
  10. drob31

    drob31 Senior Member

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    Have you had any relief from your pyroluria symptoms?
  11. PeterPositive

    PeterPositive Senior Member

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    At the moment I can't say. The increase in P5P and Zinc is a very recent thing, less than 10 days.
    Before that my P5P intake was ~15mg from a B complex, which isn't much, and zinc was 25mg.

    I find a higher dose of P5P to help with energy and mood along with the B12 and folate. Other than that I will need to see what happens in the next weeks (or months?) and also I need to test my levels of Zinc, Copper and B6 just to have a better understanding of what is going on and if the dosage is sufficient.

    I have seen that some practitioner use insane amounts of zinc and B6, but it seems dependent on the levels of HPL / KPU. Mine are that awful after all.

    My doc is on vacation at the moment, so I'll have to wait his opinion on those test results as well.

    Cheers
  12. drob31

    drob31 Senior Member

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    Thanks for the info. I'm noticing a huge difference still from b6. It's like my body can't get enough of it. I felt fatigue today in the afternoon, which is usually went it hits. I took a nap, and that still didn't help. So then I took 50 mg of p5p, and that made the fatigue about 70% better. Everytime I take one it works, but I still need a little more. Maybe I should increase my dose.

    I should also get my zinc, copper and b6 done as well. The only thing I'm worried about is that the unconverted form of b6 may be normal or high, but maybe my body isn't converting it because of some issue with methylation. I'm considering upping it to 200 mg a day.
  13. PeterPositive

    PeterPositive Senior Member

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    Interesting, I've never heard of issues with methylation that would cause inability to convert B6.
    Do you have any references?
  14. drob31

    drob31 Senior Member

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    "There are four cornerstones to the methylation cycle and on each cornerstone sit four molecules namely homocysteine, methionine, S-adenosylmethionine (SAMe) and S-adenosylhomocysteine. Each of these molecules leads into the next one by means of enzymes. The important co-factors that allow this to happen are the B vitamins such as folic acid, vitamin B12 and vitamin B6. In converting from S-adenosyl methionine into S-adenosyl homocysteine, a methyl group is given up and this can be used to stick on to other molecules - hence the name, the methylation cycle.

    However, there is a particular bio-chemical glitch here. In order for the methylation cycle to work these B vitamins have to be in their activated form, namely methylcobalamin, folinic acid and pyridoxyl-5-phosphate. In order to get cobalamin into methylcobalamin, the methylation cycle has to be working. So if this cycle has crashed completely, the body can't make methyl cobalamin in order to get it up and running again. Since this cycle is so fundamental to other biochemical cycles including trans-sulphuration and folate metabolism, it can't change the vitamin B6, folic acid and cobalamin into the active forms necessary for the methylation cycles to work.

    This means that in order to get this cycle up and running initially we have to prime the pump with the activated vitamins, but hopefully once the methylation cycle is up and running, it can function on the vitamins in their normal states."

    http://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle


    So, based on that, the very act of pyroluria reducing b6 should lead to methylation issues, given it's deficiency. And not only that, but p5p is required to get it working optimally again. To make matters worse, MTHFR requires you to add in other co-factors to get it running.
    Last edited: Aug 14, 2014
  15. PeterPositive

    PeterPositive Senior Member

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    Thanks, that's an interesting summary.
    Yeah, I know what you mean. I have the C677+/+ mutation and have been struggling keeping the homocysteine levels down for several years. When I found out about this, my methylation cycle was almost 100% stuck. I was in bed all day, unable to eat almost anything besides some rice, and small doses of B vitamins gave me pretty bad reactions. It has taken me 2 years to restart the cycle and it's still not working properly.

    With B6 / P5P things are probably even more complicated than that. I've recently learned in another discussion that even if P5P is referred to as the active form of B6, it's not immediately bio-available and takes two more steps to get going in the cells. Which is anyways better than regular pyridoxine which requires three steps.

    http://forums.phoenixrising.me/inde...or-b2-deficiency-in-me-cfs.15442/#post-249840
    Last edited: Aug 14, 2014
  16. DeGenesis

    DeGenesis Senior Member

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    I'm afraid of overdosing on this one, even at small doses. They have a large effect on me. I think certain bottlenecks like b6-p5p are best tread carefully, but you seem to know what you're doing and I'm glad it's helping you. Keep on the look out for signs of peripheral neuropathy.
  17. PeterPositive

    PeterPositive Senior Member

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    I know what you mean. I started taking sublingual P5P over 2 years ago. I used to take 1/4 of a 17mg tablet 'cause anything more than that was too strong for me at the time. Similarly I had to titrate B12 starting very low.

    Now I can take ~50mg P5P without side effects and it seems to help. I think I'll keep an eye on it by checking levels every 3-4 months.

    Isn't peripheral neuropathy a side effect of excessive B6 only?
    DeGenesis likes this.
  18. DeGenesis

    DeGenesis Senior Member

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    Not sure about this one.

    The dreams though. Do you get those? Sorry if this was mentioned earlier :).
  19. PeterPositive

    PeterPositive Senior Member

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    You mean if I have dream recollections? Not very often, maybe once in 7-8 days. I know that high dose B6 can improve that quite a bit, however I've only been taking 50mg of P5P in the last week or so, probably too early to see major shifts.

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