The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

feeling worse on Pyridoxal 5 Phosphate

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by helios, Jan 28, 2013.

  1. helios

    helios

    Messages:
    79
    Likes:
    31
    Brisbane
    I don't know if I have picked the right forum for this question, but since this question is about a supplement for pyroluria I chose this one. I was diagnosed as having pyroluria disorder. When I read more about it, I was elated as it I explained numerous symptoms I have had for years and I read stories of others that said how the simple diagnosis had been a major piece of the puzzle in their CFS condition and it helped them become close to normal again. Unfortunately it did not work out that way for me. I actually felt worse. I kept on with the protocol since I had positive blood test for it and was classic symptom sufferer and read where some others feel worse before feeling better. On the treatment I felt a LOT more lethargic, greater difficulty concentrating and sticking to tasks, a lot more headaches, more apathetic.
    Recently I had been feeling quite unwell so backed off on all my supplements. As I improved I started to add a few back in haphazard manner, it was then that I able to isolate the P5P as making me feel so crappy (headaches + sleepiness + brain fog + feeling of numbness in the prefrontal cortex region very soon after taking just that). For the past 2 years I have generally taken all my supps at the same time (start of the day + end of the day). Like many here I am on swag of different things, and feeling worse after starting on the pyroluria protocol, just made me end up taking more to help find the missing piece to my health puzzle.

    After all that....can anyone here relate to this or know of others who had bad reaction to P5P? I did a bit of a google search and not much came up. Pretty much all the articles raved about it being so good for you and better than B6. My doctor knows I have complained about the pyroluria treatment not working but I am going to email him about the P5P, but I suspect he might not have any answer on it.
     
  2. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    257
    Michigan
    Just curious - you are taking zinc also for pyroluria, right? Brain fog is often a symptom of thyroid trouble - could you not be getting enough zinc for your thyroid? WHat is your TSH? It should be < 2.0. My thought is that maybe you cleared up a high homocysteine which was feeding back to your methyl cycle enzymes preventing them from working to produce more SAMe. Once you cleared the feedback inhibition, your methyl cycle could work and it requires zinc (for methionine synthase) which stole it from your thyroid (i.e., not enough zinc to go around once you opened up your methylation pathway). Just a plausible scenario to think about.

    Triff
     
  3. helios

    helios

    Messages:
    79
    Likes:
    31
    Brisbane
    Hi T. Yes I am taking zinc. I have experimented with a couple of forms of zinc. I have recently started taking the P5P and zinc at different times of day after reading an article that advised this.
    I cannot remember what my TSH is. I know I had it tested along with T4 I think and was told they were fine. I have not had my homocysteine levels checked for a number of years. My doctor at the time, put me on B-12 (Cyanocobalamin then the methyl version) and Folic acid acid and it did not lower my levels at all. (prior to pyroluria diagnosis)
    I am on 60mg of Zn. I also take methionine. I also take Iodine.
     
  4. Lotus97

    Lotus97 Senior Member

    Messages:
    2,035
    Likes:
    520
    United States
    lovingthemindframe likes this.
  5. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    What does it mean if zinc gives you really bad anxiety? This has happened to me several times now. I am very high copper and low zinc on my hair analysis, so I thought maybe the zinc is displacing the high copper and that once the excess copper hits my bloodstream, it zaps me with over-stimulation and anxiety.

    Any ideas on how to remedy this?
     
  6. Lotus97

    Lotus97 Senior Member

    Messages:
    2,035
    Likes:
    520
    United States
    Although your symptoms do seem to suggest that zinc is displacing the copper, there was a discussion in this thread about whether or not zinc is actually as much of a copper antagonist as some people say.
    http://forums.phoenixrising.me/inde...rome-by-lawrence-wilson-md.13251/#post-334820

    Freddd says some cofactors including zinc can cause start-up in some people.
     
    lovingthemindframe likes this.
  7. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    Thanks Lotus. I am not inclined to believe in the "start-up" concept. Usually if something doesn't work for me, there is another reason than that.
     
  8. Lotus97

    Lotus97 Senior Member

    Messages:
    2,035
    Likes:
    520
    United States
    I'm not sure what to think. I don't quite understand the concept to be honest. However, recently 800 mcg of biotin seems to really set me off when in the past I've taken much higher doses (up to a 5000 mcg) without a problem. I'm not sure what's going on since biotin and zinc (along with ribose, vitamin D and C which were also mentioned) aren't methyl donors, but some people seem to have a strong reaction to certain supplements after beginning a methylation protocol.
     
  9. Freddd

    Freddd Senior Member

    Messages:
    4,938
    Likes:
    1,470
    Salt Lake City
    Hi Dreambirdie,

    I'm not sure why zinc triggers this. I had to titrate it myself. Zinc is interactive with cobalt in the cobalamin in all sorts of transactions. It appears it's lack could inhibit a lot of b12 transactions just looking at the types of articles that come up. A lot of very complicated chemstry I don't understand. Anything concerning only copper is far too simplistic, but a balance is needed there too. It appears necessary, just like magnesium, for b12s to work. It is a limiting factor.
     
  10. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    257
    Michigan
    Startup is real. I keep thinking back to Velha who recovered from ME/CFS by working through the startup slowly. She just started low and slowly titrated up over the course of months. She was able to cure herself.

    I want to say that I don't experience startup, but in fact I have had electrolyte problems my whole life and I just know to take more of this and that as I go depending on how I feel. So I would be unconscious of 'startup' symptoms and they fall into the slush of stuff I've ignored forever.
     
  11. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    257
    Michigan
    Ok, my next question is whether or not you are taking an active B complex and TMG? IMHO you should never take any B supplement by itself. How do you know your mB12/mfolate path is not blocked? And you need TMG to keep homocysteine low, especially after meals. Why take methionine? Just eat an egg. But take the TMG for the methyls. Methionine can only build up whereas TMFG is a methyl source that also helps lower homocysteine.

    Um, lest you consider blowing off the mB12 and mfolate path and simply relying on TMG, it does not work and can cause brain swelling. I read at one time in studies that the TMG path does not work in the brain. I am not sure if newer studies have shown otherwise. But I do know people have died from simply supplementing high dose TMG. The amount of TMG that the people who eat the most get from diet is 2g. It also has been shown recently as the dose that helps in autism.
     
    Dreambirdie likes this.
  12. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    triffid113 What B complex do you take?

    TMG made me feel REALLY overstimulated. I take tiny doses of MB12, but do not take any active folate right now. I'm waiting for pollen season to end before I add that.
     
  13. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    257
    Michigan
  14. triffid113

    triffid113 Day of the Square Peg

    Messages:
    702
    Likes:
    257
    Michigan
    I take Thorne Basic B http://www.iherb.com/Thorne-Research-Basic-B-Complex-60-Veggie-Caps/18791. It has folinic acid, but my doctor says genetically I need it. It should be taken 2x/day as it makes a huge difference in energy when taken 2x/day.

    You mention that you are waiting for pollen season to end. I find that pollen (allergies) destroy mucous membranes and it takes quite a lot of zinc to rebuild them. I am taking 75mg zinc/day during allergies and actually respond to much higher levels (up to 150mg). However I am only taking 75mg because I am low on copper and I do not want to interfere with copper absorption. It has been proven that my thyroid goes out (TSH>5.5) and so does my adrenal gland (sudden low blood pressure despite 3 gene causes extremely high blood pressure normally) during allergy season. This is all due to low zinc. I can tolerate close to a month of pollen before this happens due to that I supplement zinc. After awhile I just can't keep up. So...think very strongly about zinc. Unless you have found something that keeps your allergies under control so that your mucous membranes are not damaged. Mine get damaged even with singular, although not as bad (maybe 50mg bad). Flonase no longer works for me. I think 15-25mg zinc/day was good enough with flonase. If you've found something better - please SHARE!
     
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    Zinc makes me feel awful. I think it must be pulling out/detoxing all the excess copper in my system, so I can't take it for now. Once I get the methylation happening, I hope to get that worked out.

    What's helping me with allergies is pycnogenol, which I get from Trader Joes and Isoqquercitin, which I get from Amazon. I have to take at least 6/day.

    I have been taking the B Right, but will check out the Thorne Basic B next time I order from I Herb.
     
  16. Lotus97

    Lotus97 Senior Member

    Messages:
    2,035
    Likes:
    520
    United States
    The B Right really messed me up once they added Quatrefolic methylfolate to the formula. I didn't know about methylation at the time so I had no idea why I was having such a reaction. I thought I had mercury toxicity because it happened a few days after my tooth with an amalgam cracked. Although I haven't completely ruled some exposure to mercury, based on other people's accounts of reactions to methylfolate it seems that was the main thing causing my symptoms. There was a quote by Rich saying for some people even a toothpick of methylfolate is enough to blow them away (although I'm also aware that some people here do need relatively high doses of methylfolate). Actually, I'm glad this happened because otherwise I never would have discovered Phoenix Rising or learned about methylation if I didn't have that experience with methylfolate.

    I don't really understand what the deal is with folinic acid (actually I do, but I don't want to get into that). There have been multiple studies proving it's effectiveness for the vast majority of CFS patients. Although methylfolate is the only folate necessary for methylation, folinic acid serves other important functions in the body.
     
    Dreambirdie likes this.
  17. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,047
    N. California
    Lotus97 So you use folinic acid instead of methylfolate?
    Sorry, I am all fuzzy from pollen-brain, so you'll have to spell it out for me again. :alien:
     
  18. Lotus97

    Lotus97 Senior Member

    Messages:
    2,035
    Likes:
    520
    United States
    I would take folinic only, but all b complexes have either methylfolate or folic acid. One brand has a multi with only folinic acid and another brand has multi with only natural folate, but I'm already stocked up on minerals at the moment. Right now I'm taking another Thorne B complex that only has 100 mcg of methylfolate. I seem to do ok on it. I take 295 mg of Niacin with it so maybe that prevents me from reacting strongly to it. I suppose I could also take vitamin C with a B complex to block the methylfolate, but I'm afraid what would happen if I forget to take the vitamin C.

    I don't know why I reacted the way I did to the B Right. Someone said he was taking the B Right (after they added Quatrefolic methylfolate) and didn't have a reaction, but when he tried a tiny amount of a different brand of methylfolate it caused a severe reaction.

    I did buy some methylfolate to try by itself at some point to see how I react to that, but I'm not ready to do any tests. Right now I'm wired even without methylation supplements so it's hard to tell how much each thing is affecting me. After I stopped the B Right I was fatigued for about a month, but then I decided to try taking only B12. It was going ok at first, but then I increased the dose of B12 and also took 800 mcg of folinic acid for about 5 days (I misread Rich's protocol). I was taking a lot of folic acid too which could have caused problems either by the Methyl Trap or it's even possible I converted the folic acid into methylfolate. Whatever happened I stopped everything for about 3 weeks. My wired symptoms died down, but didn't go away completely. I started taking B12 again after I started to get depressed. There were a few times where the B12 seemed to help my depression, but then it came back so I'm exploring other causes. However, I decided to continue with methylation and just do it slowly. It seems to be going ok so far, but it seems I have a lot of health issues which methylation can't solve. Sometimes people in the methylation forum get tunnel-vision and expect methylation to fix all their problems. This might be true for some people, but others here have a whole host of other possible health issues such as viruses/infections, autoimmune conditions, thyroid and/or adrenal issues, Lyme, metal toxicity, etc. Rich seemed to think methylation would be helpful for people with Lyme which is part of the reason why I decided to continue with methylation. I'm too sick for Lyme treatment and even if I wasn't I couldn't afford to see a specialist.
     

See more popular forum discussions.

Share This Page