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Porphyria

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

  1. soulfeast

    soulfeast Senior Member

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    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

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    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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    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
     
  5. kimomile

    kimomile

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    Jah, Are you still around on this? I am also having porphyria symptoms. I have CPN and Lyme. It's very hard to find anyone who has these symptoms. If you are still on this board, I would love to chat with you about what you feel!

    Kim
     
  6. JAH

    JAH Senior Member

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    Hi Kim,

    I'm here. I don't know that much, but feel free to ask, either on the forum, or you can PM me.

    JAH
     
  7. kimomile

    kimomile

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    JAH, what are your symptoms? I can't seems to get a grip on this issue. I have crazy brain fog, fatigue, chest tightness, and some crazy ache in my stomach. It messes with my entire digestive process. I tested borderline positive for porphyria by ND, but negative with MD. This is such a huge block to my treatment.
     
  8. Violeta

    Violeta Senior Member

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    Yeah, porphyria is a huge block to treatment and a huge block to living. I don't even know where to start talking about it, I was the only person I could find to talk about it with for a couple of years since I realized it was part of my problem. A friend with a very severe case kept telling me for years that I had the symptoms but thought there's no way I'm going to take glucose, I'll get better the healthy food way. I ate and ate my healthy food until I could no longer eat anything, and then someone posted an article by Steven Rochlitz at a forum where I was working on removing yet another plant chemical from my diet. It finally hit, and what a relief. I bought some dextrose from iherb and started taking small amounts of it whenever I felt I needed it, went through a fairly long straight of only being able to eat white foods, and the pain and insomnia started to go away.

    PS, though, I never got the test. I stopped going to doctors a while ago. All I can say is, I had the symptoms and I used the remedy to get relief. I found some things along the way that have really improved the situation.
     
  9. JAH

    JAH Senior Member

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    I also don't know where to start when talking about porphyria. I don't know if I have it, for one. Have had CFS since 1987, but 2 years ago things really changed for me when I started having "attacks". Very severe, seizure like, tachycardia, shaking, spasming, weakness, felt like I was going to die or lose consciousness. Had to go ER. 3x. Unfortunately they did not test me for porphyria at the hospital. Had my urine tested later, and had very elevated porphyrins, then very slightly elevated porphyrins during an attack. Never had the purple urine. I still have muscle spasming in my abdomen, if I walk around, I can get spasming in my throat and jaw. My abdomen feels cramped up, but haven't had the really severe stomach pain that some report with porphyria. I don't have attacks like I used to - thank god - did have on about 6 weeks ago. I also think that taking cholestyramine was a turning point for me. Not sure if you have tried that drug, but thing calmed down for me after I took it, and whenever I feel "attacky" I take it again.

    I've never taken dextrose, would be interested in learning how that might help me. Since that first trip to the ER been through hell with tests finding tons of neuro problems - POTs, neuropathy, vestibulopathy , radiculopathies . Just a never ending puzzle, more and pieces, but don't get put together...J
     
  10. Violeta

    Violeta Senior Member

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    It's very difficult to get it diagnosed. My friend was told by a doctor in a teaching hospital in Philadelphia that she just needed a psychiatrist.

    Dextrose is just what the only glucose that I could find is called. Glucose is what they use first to try to get you out of a flare, so I figured why not take it on my own. I had the chronic pain/universal reaction type, so it didn't pull me out of a flare but gradually eased up the constant pain.Sometimes I took it with coke, which is sweetened with real sugar. It was hard on my teeth, but I was gradually able to wean off of it. When I would wake up in the middle of the night I would eat a spoonful and quickly go back to sleep.

    When I started taking vitamin b2 about 1 1/2 years ago, I had read that it would help with iron metabolism, but never dreamed it would help with porphyria. It did really help, though, but it brought my lung issues to a head. I dealt with the lung issue, and haven't had any return infections. And yes, the b6 is good for it, it took me a while to realize that. I think B5 is very important too. CoEnzyme A is used in the first step of heme production, and if heme production isn't stopped because of not reaching the point of negative feedback kicking in, can you imagine how that would cause a b5 deficiency.

    Potassium is necessary, too, but I haven't been diligent to deal with that yet.
     
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  11. JAH

    JAH Senior Member

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    How did you get diagnosed?
     
  12. Violeta

    Violeta Senior Member

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    I don't have a diagnosis, I just considered that I might have it when I read this article by Steven Rochlitz.

    http://truemedicine.com.au/wp-content/uploads/1801porphyria.pdf

    I doubt that I would have even looked twice if it weren't for my friend telling me that I had the symptoms. So after reading that article I started researching it to see what I could find and if there was a way out of it.
     
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  13. JAH

    JAH Senior Member

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    Thanks. Look forward to reading the article when I'm a little more awake, J
     
  14. Violeta

    Violeta Senior Member

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    One thing that helps is knowing the triggers, and you already found out that stress and low carb are two of them. There are some foods and meds and even supplements, of course, too, but maybe you already know about them.
     
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  15. Gondwanaland

    Gondwanaland Senior Member

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    I had no idea :jaw-drop:
    I didn't understand that... Anyway, what do you think about my vitamin proportion? I finally found a good B1-B2 ratio to avoid low serotonin symptoms, but I had no idea about B5. I keep it low b/c it makes me sleepy.
    Can't supplement it consistently either :rolleyes:
    My gums and teeth roots ache horribly when I take Potassium Gluconate :wide-eyed:
    I kinda tolerate K chelated, but my kidneys and adrenals aren't happy about it. Perhaps due to low B1? I am working on it right now.
     
  16. Violeta

    Violeta Senior Member

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    I know, I can't believe no one ever mentions that CoEnzyme A (from B5) plus glycine are the products in the first step of heme, not even in all the pyroluria information! B5 made me feel better over night!

    B1 is a Phase I inducer, too, so if it doesn't bother you, that's good. It had been causing me sore lips last year, but this year I am able to mix a little bit in with my B2, B5, and B6.

    Your vitamin protocol looks very organized, and interesting, too. It seems that different people need different amounts of the various B's, and I am impressed that you have exact numbers for so many things. I'm not organized that!

    Gee, the potassium gluconate makes your gums and teeth roots ache! I wonder why. I have to get started with experimenting with potassium. I have some gluconate and citrate, maybe some chloride hidden away somewhere.
     
  17. Gondwanaland

    Gondwanaland Senior Member

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    I didn't know glycine was needed here... I can't supplement it, even magnesium glycinate makes me feel awful, I probably convert glycine into oxalates
    Ha! So this is it B1! I was thinking it was the B2. Now it makes sense. I got this when I tried to take 3x 1/2 doses in a day and then backed off. The lip skin thinning... I associate it with hyperthyroid. I know B1 can make one hypo by overstimulating the thyroid, so the 1st step would be hyper symptoms...
    It is because I order it from a compounding pharmacy, so I must decide the dosages ahead :ill: But I managed to find a way of increasing by taking an additional capsule with 1/2 dose... which didn't work out this time because it clearly was too much. So last time I ordered I only increased the CoQ10 and Choline doses.
    I tried K chloride last year and it made my head so fogged. It tickled my pituitary :depressed: I have a huge, useless full bottle here :meh:
     
  18. Violeta

    Violeta Senior Member

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    Whoops, it's succinyl CoA, oh well, same source, B5. I have a problem with glycine, too, I thought it was because it was converting to uric acid! Ha, we need a chemistry lab in our houses. And you need to change majors!!! But I don't know if mag glycinate makes me feel bad, I'll have to check because that's what form I have right now.

    Yeah, it's kind of a bummer because I think at the same time I'm deficient.

    It's nice to have it compounded for you. That makes things a lot easier. Some days I don't take my B's because I really should break down the capsules but don't feel like it.

    That's a shame about having a bottle of potassium chloride and nothing to do with it! Have you tried potassium bicarb?
     
  19. Gondwanaland

    Gondwanaland Senior Member

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    Took thirty milligrams of it and could stand up. My heart almost stopped. I have a huge, useless bottle full of 500mg capsules here :meh:

    BTW I read that document about porphyria and my opinion about it is that this condition has the same underlying factors as pyrroluria, HIT intolerance, Mast Cell Degranulation, MCS, oxalate intolerance, salicylate intolerance, any food intolerance, heavy metal toxicity etc etc etc:
    Overburdened liver and deranged gut microbiome, i.e., too many antibiotics, too many pesticides, too many medicines/vaccines.
     

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