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Years of low libido and ED. Relation with Methylation - Pyroluria.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by davide77, Mar 14, 2015.

  1. davide77

    davide77

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    Hi,
    I'm Italian.. 30 years old..sorry for my english..maybe it's not so perfect :).
    I have been suffering from erectile dysfunction and low sex drive for years.
    At the beginning, I thought it was related to topical Minoxidil, for hair loss (I have used it for 5 years).
    I started to find out what could help me... and so, up to now, I can say that:
    - methylcobalamin gives me little improvement;
    - B6 makes a great difference, causing a great improvement in libido and erection (both B6 and P5P);
    - B6 and zinc make greater improvement;
    - folic acid makes me impotent;
    - methylfolate, taken with methylcobalamin causes improvement for few days, then nothing;
    - methylfolate taken 24 hours after methylcobalamin (not taking mb12 that day) causes some degrees of improvement, not as B6 does. And after a few days, the improvement stops;
    - folinic acid, taken with B6 and zinc, cures me and restores optimal erections, but doesn't enhance libido in the same extent of erections. In addition folinic acid makes me relaxed.. great feeling!
    Unfortunately, in Italy we don't have any genetic test like the 23andme one :( ..
    So, what I'd like to ask you is:
    - what kind of snp could I have?
    - did someone have the same problems?
    - has someone treated this well?

    I think that my problem has to be connected with methylation or bh4 production.
    Other clues are:
    - precocius white hair;
    - great memory when I was a child-teen until 30 years, then it started to fade... but big improvement since I take b12 (methylcobalamin and/or adenosylcobalamin);
    - IBS and bloating since I was a child.

    What I'm doing right now is:
    - 5000 mcg mb12 and 2500 mcg adenosylb12 after I wake up;
    - 800 mcg methylfolate and 1250 mcg folinic acid in the afternoon;
    - 50 mg of P5P (I see that I feel better when I take it close to the folates);
    - zinc, 22 mg once or twice / day;
    - magnesium once per day;
    - betaine HCL at lunch and dinner, depending on how many proteins I have.
    It seems that the keys of the treatment are folinic acid and p5p, and to a lesser extent, zinc.
    What could it be????
    I also thought that Minoxidil started a NO/ONOO loop on a pre-existing scenario of snp like MTHFR a1298c and MTR-MTRR. But these are only suppositions, because I can't do any test where I live!
    Has someone already suffered from this (low libido, weak erection, memory deterioration) and resolved it?
    Thank you so much, to everyone :D !!
     
    MikeV and Wayne like this.
  2. Gondwanaland

    Gondwanaland Senior Member

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  3. pogoman

    pogoman Senior Member

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    Sounds like what I went thru intermitantly since my 20's and most of the past 15 years.
    Anemia with no cause, IBS, diverteculosis, testosterone level going down every year to where it was in the gutter last year, hypothryroid symptoms but lab levels not bad enough for endo's to treat and finally myopathy.
    From talking to the different specialists I've been referred to, I think basically MTHFR shut down my different body systems that even taking the normal methylation protocol did not help.
    Now in addition to the methyl groups, I am taking just about all the cofactors for mitochondrial energy and I have improved greatly the past couple months.

    So what you are taking is fine tho I would be leery of the folic acid.
    if your are MTHFR sensitive I would stick to methylfolate and the other B vitamins.
    Look into B2 riboflavin, L-carnitine, choline and coq10.
    And as mentioned a 23andme test would help you pinpoint specific issues instead of guessing.
     
    Last edited: Mar 17, 2015
  4. davide77

    davide77

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    thank you very much!! really..!!
    Gondwanalad, I have been eating paleo since 2014.
    Pogoman, I have always been dealing with IBS, and so I'm sure that my problems are bacteria-related. In fact, I forgot to mention that every treatment that is going to kill bacteria-candida-parasites makes me feel better (Clark method, oregano oil, garlic). You're right about folic acid, it's rubbish for me. But also folinic acid and methylfolate, if I take too much of them, make me worse, primarily if I don't take adequate amounts of B12. But I have to take them separately to have the best result. So, it's like there is a subtle balance among folates, b12, p5p. Although I'm sure the bh4 pathway should be involved, I think there are other pathways, near to it, like the MTHFR one, that need to be addressed, but up to now I am not been able to find the equilibrium with timing and dosage. Because I'm pretty sure that the secret is in timing and dosage. Regarding riboflavin and carnitine sometimes I take them.. but they don't seem to be crucial for the protocol, even if they helps me. Anyway I take Solgar p5p that has already a little amount of b2. I will look into coQ10 and choline.
    I hope that someone has some experience with dosage and timing (maybe I have to take folates every other day.. I'm going to try..)..
    Also, I'm considering the possibility to order a 23andme test, but the Italian Custom is so problematic.. anyway I will try..
    Thank you..a warm hug
     
  5. pogoman

    pogoman Senior Member

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    I have used freddds protocol as a start but changed it to fit my symptoms.
    I ran across his protocols back around 2012 when I found out my sister had MTHFR and I was fighting extreme muscle pain and fatigue.
    Back then, methyl folate, MB12 and P5P didn't help.
    So I stopped it, not until I started riboflavin and coq10 did I see improvement in pain.
    Afterwards, I went back on the methyl folate and B vitamins and they helped also.
    I tried carnitine by itself, no improvement.
    But taken with choline carnitine helped alot.
    The 23andme test I took last year verified I carry both c677t copies like my sister and there are also other potential SNP's that may contribute toward my medical issues.
    I will add a supplement by itself and see what happens and either continue or stop depending on whether it helps.
    Thats how I found out that I react badly to sulfur supplements and vitamins.
    And mitochondrial cofactors help me immensely, I am positive its also raised my testosterone level altho I won't know til May when I do labs prior to seeing my endo doctor.

    Just be aware P5P can cause neuro problems when taking it and one doesn't have a deficiency.

    I would also try to get a sex hormone panel tests done if haven't already.
    Testosterone, SHBG, FSH, LH etc.
    This would help determine if you have primary or secondary hypogonadism and find treatment accordingly.
    I had secondary hypogonadism, it helped knowing that the cause was elsewhere.
    DHEA suplemmenting may also help testosterone levels but I regard it as a bandaid and would not take it for a long period.
     
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  6. davide77

    davide77

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    Thanks a lot Pogoman.
    I have done bioumoral panel and all sex hormones are ok (LH, FSH, SHBG, Prolactine, Testosterone, Estrogen etc etc). So hypogonadism is not a cause for me.
    But then again, if some supplements that push up on neurotransmitters turn me on normality again, it must be a problem related to Nitric Oxide and Dopamine/Serotonine release. As BH4 regulates both, and folic acid for me is like poison, I suppose it's a a1298c mutation (at least), with a loop NO/ONOO (pyroluria is just that, I think.. in fact, anecdotally, adenosylb12, B6 and zinc can reverse the NO/ONOO loop). But I'll do the 23andMe test.
    For P5P, I take 50 mg/die.. I don't have any sign of perypheral neuropaty (some people take 100 mg/die without any problem..)... it's water soluble, it is not stored in fat.. so I'm sure that it's a safe dosage (furthermore it has a great great power of preventing some diseases).
    As regards other, I feel very good. I'm extremely fit, workout 5 times per week, work with joy, study a lot, I like reading, have a lot of interests. The only problems I had were this one related to sex drive (still present), a small brain fog and loss of memory that now with these supplements is going out returning to old levels, insomnia (early awakenings) that improved really a lot addressing the gut (oregano oil, Clark method, GSE), and adrenal exhaustion (totally cured in 1 month, addressing the gut, without taking all those supplements like C vitamin, B5, etc etc and without resting) - here it's why I think the problem is bacteria related (and a1298c and other SNP in MTHFR are prone to SIBO).
    I think that this problem, to tell the truth all problems in this forum, are curable permanently, if right addressed with epigenetic. The problem is to find the right things to do..
    If anyone has any suggestion, from his experience.. I'm very happy.. anyway.. I'll win :D :D
    Thanks again..!!!|
     
    Last edited: Mar 15, 2015
  7. pogoman

    pogoman Senior Member

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    altho its water soluble, its been reported that P5P levels can elevate in the body and cause issues.
    I don't know if P5P is a factor but remember neuro issues can cause ED.

    if your hormone levels are ok, other areas that can affect ED are hypertension, high blood glucose (metabolic syndrome) and high lipid levels (trigs and cholesterol).
     
    davide77 likes this.
  8. davide77

    davide77

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    Yes, it can bind strictly to plasmatic proteins with a halflife of 20 days, but its negative effects are reversible.However P5P is a key of my protocol, without it it doesn't work.. so I think I need it.
    My blood pressure is perfect (110/65), systolic increases 15 mmHg in stand-up position and then goes again to 115-65 (so my blood pressure is perfect and my adrenals are ok). Blood glucose ok, too (85 mg/dl fasting glucose). Trigs very low (45), Total Cholesterol 180, with HDL 90.
    Everything is perfect... except my nitric oxide (that I can't measure).. the problem is related to genes, neurotransmiters, NO pathway..
    I'm trying to solve the problem.. nothing is impossible.. just takes time !
     
  9. jaw123

    jaw123

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    Hi davide77,

    I am wondering do you have an update on your treatment - especially concerning the erections.

    I am also using Minoxidil, coincidentally, and have the same problems concerning libido and erections.
    I have been using p5p, b12 and methyl folate for three days now - but have not noticed any improvement.
    How long did you take these supplements for before you noticed and improvement?
    And has it lasted?

    Thankyou!
     
  10. PeterPositive

    PeterPositive Senior Member

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    Have you tried adding Zinc? Zinc can have a significant effect in these regards.
    You can start with 10mgs and if you tolerate it ok, you can push it up to 30mg/day. Give it at least 1-2 weeks to see the first effects, especially if you have a deficiency.

    I have experimented with up to 60mgs/day, which is a high dose, as I have elevated HPL (pyroluria) and my zinc gets depleted very quickly (verified via several lab tests).

    Methyl-B12 seems also to improve libido, although the required dosage may be different for different cases. I started experiencing some libido coming back after taking 3-5mgs for a few weeks, and got a stronger effect when I reached 8-10mgs.

    It would probably be a good idea to also take a basic B Complex to accompany the B12/folate: all the B vitamins support each other. A deficiency in one them can hinder the activity of the others.

    cheers
     
  11. jaw123

    jaw123

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    Thankyou very much for the feedback! I will definitely try adding a low dose of zinc and a B Complex and monitor things over the next few weeks.

    Have you noticed that this balance of supplements has been able to restore normal erections?
     
  12. PeterPositive

    PeterPositive Senior Member

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    I didn't have erectile dysfunction, but more a generalized, profound lack of energy and libido. The supplements made a huge difference in physical energy, mood stability and, as a welcome "side effect", libido too :)
     
  13. davide77

    davide77

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    Hi jaw123...
    first thing, you write "I'm using Minoxidil"..well.. the fist step is to stop that shit :D
    Then.. Minoxodil, in some people with some SNP causes a NO/ONOO loop and a B12 deficiency.. the NO/ONOO loop won't fix by itself if you have gut problems..
    p5p, methyl/adenosyl b12 (not cyanocobalamin) are right, with cofactors, but in the right dosage. If you take more folate than b12 you go into a methyltrap... so you'll feel worse.
    I think that is important:
    - address your gut problems;
    - use low- medium doses of zinc to stop NO/ONOO loop..it takes months;
    - take methylcobalamin (not cyanocobalamin);
    - take a mix of methylfolate and folinic acid (both of them, not one of them) to assist tetrahydrobiopterin syntesis and neurotransmitters syntesis (the dosage depends on the b12 dosage, and other things.. it's the most diffuclt thing to find, and the protocol works only if the ratio b12:folates is correct.. the problem is that it's not always the same.. it could vary from one day to the other.. );
    - use potassium because folate and folinic acid deplete it;
    - use magnesium with right doses of p5p to assist melanin production (otherwise you would have insomnia because of the b12);
    - consider that if it doesn't work the culprit is likely: 1) too much folates (the most frequent), 2) too much b12, 3) not properly addressing gut problems (address the gut before methylation experiments, please).

    Once the problem has begun, supplements need to be taken for the whole life.. the doses are widely variable.
    Yes, I'm recovering.. my erections are getting better and better day by day and are almost normal, every day they are even more stronger than before.. my memory is coming back.. my body is healing from anything I was stuck in.
    It took 2 years for me to understand what it was wrong.. nobody knows the things I have now written to you.. because everyone thinks that Minoxidil is a safe drug.. yes, so it's if you your genes are ok :) .. Anyway Minoxidil unmasks a situation destined to happen, sooner ol later, because of the SNP you (we) have got. Unfortunately I can't write any dosage, .. there is no one size fits all protocol, and it could be very dangerous to give some "still advices" because methylation is not a joke, really.. a lot of side effects could occur, some of them even dangerous, ... this is what has worked for me, I have no certainty it could work for you .. you have to find what is the best for you.. anyway I'm doing a "simplified protocol" based on scientific notions...hope to publish it soon..
    Hope I have helped you :D..
    Bye.
     
  14. Johnmac

    Johnmac Senior Member

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    Cambodia
    I can't imagine Customs causing problems as you are not importing anything other than an empty specimen container and a few papers. You are exporting saliva, but they shouldn't worry about what you export.
     
  15. Gondwanaland

    Gondwanaland Senior Member

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    We are talking about one postal service ranked among the worst in the world. If you buy from eBay you've certanily seen that most sellers won't send to Africa, Russia, Brazil and Italy. Since I have lived in two of these places, I know that customs is at least 80% to blame regarding intl shipping both in and out. :mad:
     
    Valentijn likes this.
  16. PeterPositive

    PeterPositive Senior Member

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    Wait... why not Italy? I've ordered all sorts of things from all corners of the world.
     
  17. Gondwanaland

    Gondwanaland Senior Member

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    I didn't know you live in Italy. I'll be surprised if you are happy with delivery time :woot:
     
  18. PeterPositive

    PeterPositive Senior Member

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    I buy supplements in the UK and they get delivered pretty quickly. The only problem I have with customs is when buying supplements in the US. They usually get stopped and inspected, and I get extra taxes to pay. Quite annoying, but it's not that sellers from other countries don't ship over here.

    cheers
     
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