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Pyroluria/undermethylation treatment causing sudden relapse?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by zumba girl, Sep 5, 2013.

  1. zumba girl

    zumba girl

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    Australia
    Hello, I am a 53yo woman who thought her ordeal with CFS was over until the past 3 weeks when I have been undertaking treatment for pyrole disorder and undermethylation.

    I suffered from CFS terribly in 2007 (housebound for 4 months, had to move back in with my parents as I could not look after myself). At my worst I weighed 53 kg - and when I began to get a TINY bit of improvement I suddenly gained 10 kilos in 3 months! The improvement was extremely slow and frustrating, but none the less I did eventually improve enough to go back to work 2 days per week in 2008 for about 6 months, only to relapse again. Symptoms were not as severe the second time around. I did once again improve ever so slowly and was able to return to work gradually, working up to 3 full days per week (plus 3 hours travel per day). A major achievement!

    Next major achievement was recommencing exercise - now that took a LONG time. Initially being able to walk for 5 minutes, working up to 20 minutes over many months, and then stalling on that for ages. I started Tai chi which I had done years earlier, and I do think this helped get my exercise ability going a little more. And then eventually worked my way up to zumba (yay!!!)

    So I have been really leading a normal life for last 2 to 3 years, probably would have considered myself 90% better - still couldn't go out much after work; big night out would knock me out for weeks; hard zumba class would have to have a sleep in the arvo, basically good as long as all the ducks were in a row; but really I probably didn't appreciate how good I was until now.

    I have always been a bit of a worrier and bit anxious, and prior to CFS I developed kind of a phobia about driving because I felt off balance or something - this followed getting tinnitus about 2 years prior to CFS.

    I have had MAJOR stress at work since November 2012. I have worked there for over 30 years, and new people took over, put in a firm to interview us all in preparation for a restructure and possible job losses. And the stress has been unrelenting since. My levels of anxiety had sky rocketed, and I noticed that I was very irritable and not reacting normally to stress. I was having a lot of sleeping difficulty - some nights so "wired" that I hardly slept all night, other times I would get to sleep easily, but wake at 1 or 2am and not be able to get back to sleep until 5 or 6am.

    Decided to meet friends o/s on spur of moment, and the rush and panic about packing/work/organising trip meant I did not sleep much for 2 nights. This I think led to arrythmia for about 2 hours one day, then next evening on the plane I got the scary arrythmia back accompanied by nausea, sweating and diahhrea. Felt as though I was going to die on that plane! It lasted about 2 hours and the stewardess gave me some electrolyte solution which I think did help settle me down a bit. Sounds like a kind of panic attack I guess, but was feeling very happy and relaxed when it started! Anyhow, had a lovely holiday and did no exercise cause I didn't want to have to get medical attention in Bali.

    So when I came home I went to the dr to find out what was going on with me. That's when she sent me for the bloods and urinary kryptopyroles test. My integrative doctor said I have pyroluria and undermethylation, with copper overload (40% free copper). She put me onto what I thought would be harmless supplements (B6 50mg, zinc picolinate 30mg, Vit C 2000, EPO, Magnesium 500 2x day, Molybdenum 1 mg, basic B complex).

    Well within 2 days I was feeling really weird in the head, spacey, dizzy, more tired, increased anxiety, just strange. I changed P5P to normal B6. Still felt weird. When I contacted doc she advised me to increase the B6 to 100mg, which I did. And I kind of felt myself getting a lot of my old CFS symptoms back - my tinnitus is much worse, dizziness/off balance feeling, can't find the right words for things, difficulty in concentrating, increased tiredness, and the scariest of them all since 4 days ago - feeling that I am having trouble getting my legs moving.

    Saw my doc today and she says i am having a relapse, take 2 - 4 weeks off work and has recommended some supps to pick me back up. They are: ALA, L-carnitine, glutathione cream and ubiquitol. I have only taken one ALA so far. She also said to consider Vit C IV - has sent me for blood test to see if I am suitable for it.

    Then I started reading this forum and saw a lot of scary stuff about ALA mobilising mercury - last thing I want! I have also just ordered a 23andme test (might take a while as I am in Australia) because from what I have gathered in reading this site this week, there are many more genetic defects than pyroluria/undermethylation that might be affecting the way the B6 and zinc etc. are affecting me. My doctor repeatedly reassures me that it is not the B6/zinc that has provoked this relapse, but I am really wondering. And I am definitely not taking any more ALA until I can find more info here.

    Sorry this is so long - but I am really scared and not sure what to do next. Thank you if any of you very clever people are able to offer me any words of wisdom.
     
  2. PGHCFS

    PGHCFS

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    Pittsburgh, PA
    I would get off the B6 and see if that helps. I was taking only 10mg of B6 in a B-complex and I think even that low dose affected me.
     
  3. Msinnott

    Msinnott

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    Davenport, Iowa
    I had copper toxicity from a copper iud never had blood test to confirm but has all the symptoms. I started taking 50mg zinc picolate and 50mg p5p and I had some serious detox symptoms a lot of the ones you experienced. It helped to take potassium. It lasted about 6 weeks and I don't have symptoms of copper toxicity anymore. I still have my iud. I started doing the methylation protocol and have been getting better and better. I look back to how sick I was and it seems so hard to believe. Maybe try doing 25mgs of p5p and see if that helps.
     
  4. zumba girl

    zumba girl

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    Australia
    Thank you PGHCFS and Msinnot for your replies.
    Msinnot - may I ask, how much potassium? Do I get it from the pharmacy or health food store, and what exactly do I ask for? Also, did you continue with the 50mg p5p and 50mg zinc PLUS potassium for the whole 6 weeks until you felt better? Or did you have to drop any down?
    My doc has me reduce the zinc to every second day, and reduce molybdenum to 3 times per week (down from daily). She says reduce the B6 to 50mg (from 100mg). She also stressed use B6 not p5p as I originally did, as some people don't seem able to handle it.
    Thank you so much for sharing your experience, its good to hear that someone came out the other side after these horrid side effects, I guess, of copper dumping. Having recovered from CFS I NEVER want to go back to that place, but have all the old symptoms and that's why I'm panicking that I'm inducing it.
     
  5. Msinnott

    Msinnott

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    Davenport, Iowa
    I just get the regular 99mcg potassium at any health food store try taking one or two and see how you feel. Try increasing food potassium in your diet too. I did the full doses the whole 6 weeks, didn't realize I needed potassium until the 3rd week. At the end of 6 weeks is when I started adding in small doses of methyl folate and methyl b12. Then a few weeks later added in the adeno b12 and active riboflavin (rp5). I have been doing everything since April and am feeling tons better. I think I finally found my sweet spot, I am only taking 500mcgs methyl b12 and 400mcgs methyl folate as well as 1500mcgs adeno b12. It's a slow process but you will get there everyday you will start feeling better. The biggest thing is getting thru the detox part.
     

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