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Porphyria

Discussion in 'General Treatment' started by soulfeast, Feb 14, 2011.

  1. soulfeast

    soulfeast Senior Member

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    Virginia, US
    Anyone dealing with this?

    Had major stresses recently moving from mold home and then father had a stroke. Urine turned dark and reddish for days in AM.. water diluted.

    Kids have tested positive for pyroluria. my test was neg but sat at UPs for 5 days then at Vitamin Diagnostics for longer. Will never use them again for pyloruria testing. I assume a positive.

    I emotionally melted down. Thought I was going insane, remembered the pyroluria and upped my p5p.. body calmed down almost immediately.

    Posted on pyroluria list about the urine and was alerted to porphyria... my sister tested positive for this at Mayo when she was very sick. Then neg so she didnt think she had it.

    Porphyria could be a huge factor in lyme, cfs, and mcs. and I think mold illness.. i have a link to a board where someone refers to shoemaker testing for porphyrins.. but this was 8 years ago.. wonder why he stopped?? So... I am wondering if any of you have experience with this.. info..

    I have "attacks" .. my illness started with an "attack" and I could not figure out how this fit in with lyme. I developed cfs a few years ago.. worse with lyme treatment. Worse after lyme treatment. Toxic mold exposure as well..

    How the heck do these "conditions" keep adding up?

    I am getting from my readings that we produce porphyrins but when compromised, they can build up.. toxins can block the completion of heme production (or is it the breakdown?), infections play a role..

    I am getting high carb diet (just when I was gearing up for paleo-GAPS), glucose for attacks, vitamin A mentioned by some but not in standard literature, water flushes for water soluable porphyrin (by products?) and CSM or charcoal for fat soulable.. avoid food and drug triggers. (the list is huge)

    Thank you for any insights..
     
  2. paclabman

    paclabman

    Messages:
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    Seattle area
    Have you ever been tested for Chlamydophila pneumoniae? Cpn can mess up your heme, interfere with ATP production, and there are your fatigue and PEM type symptoms. I have both chronic Lyme and Cpn infections. I think we've cleaned them up a lot, and I don't expect eliminating the last of the bacteria will give any significant improvement in my symptoms. PEM was confirmed with decrease in an already low VO2@AT after the second day of testing at Pac Fatigue Lab.

    Lyme treatment is partly effective on Cpn as well. A secondary porphyria is common with Cpn and treating Cpn infections.

    A link you might find helpful:

    http://www.cpnhelp.org/secondaryporphyria

    I don't mean to sound like Debbie Downer, but ya ... when there are overlapping conditions that can cause your symptoms, there does seem to be a negative synergy with them. I think it's difficult to get global improvement when you have to clear up several things that are probably interacting in a bad way.

    And it appears that maybe a lot of us with Lyme may have XMRV too ... just what we need, another infection ... :eek:

    At any rate, it could be a secondary porphyria.
     
  3. rlc

    rlc Senior Member

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    Hi soulfeast, if i'm reading this correctly you've been tested for pyroluria but not for Porphyria, in which case you need the blood, urine and stool tests for porphyria done, these tests can be unreliable because they only show a positive result when you're having an attack of it, which could explain your sisters negative result.

    However dark coloured urine can be a sign of numourous conditians such as liver and kidney and i would recomend that you get a doctor to tests your urine, and run other tests to rule out the other possible conditions. On this site you will find alot of information on changes in urine colour http://www.wrongdiagnosis.com/sym/urine_color_changes.htm

    All the best
     
  4. JAH

    JAH Senior Member

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    San Jose
    Hi Soulfeast,

    Not sure if you are on this forum anymore, but searching info about cpn/porphyria, and came across this thread. You are the only person that I have found to have CFS and "attacks". I have also had this, did have positive porphyrins (not during an attack) and mildly elevated porphyrins during an attack. I also have cpn (chlamydia pneumoniae). If you are around would love to know how you're doing. Anyone else with thoughts on cpn/ porphyria very welcome! Have to say I don't really understand the porphyria/pyroluria connection, which a few folks have brought up on some threads.

    Thanks as always JAH
     

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