porphyria--any of you ever been tested and/or diagnosed for these?

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Feb 16, 2010.

  1. simonedb

    simonedb Member

    porphyrias could defintely tie together some of the events that happened around the time I became chronic with health issues. have never been tested for any of them, it sounds like it would take diligence to get decent testing for it.
  2. simonedb

    simonedb Member

    they may not be as rare as originally thought and they can start to express after chemical exposure or sickness, some people never get symptoms, if you go to wikipedia it lays out all the different types well.

    I have the sun exposure problem sensitivity, and get dermatitis from sun, can't go out in sun when its over 68 for very long anymore, I had gallbladder and gut problems, some fatty liver, these all tie into a certain type of porphyria and it can explain the multiple chemical sensitivity problem p450 issue I have. The story of events and circumstances surrounding me really starting to get chronic pain and fatigue revolves around sun, chemicals, gut/gb, dermatitis etc, some weird things conspired together and now I think I know the link.
    Of course porphyria could just be a symptom of a larger issue like cfs or chemical poisoning.
  3. hollie9

    hollie9 New Member

    My family has been devastated by porphyria, many of my aunts and uncle died or were paralyzed from it and my best friend cousin died at 28 after a long, horrible bout of it. The best doctor was Australian.

    The symptoms I've seen in my family members were abdominal attacks of pain that made my cousin double up...she had these attacks way before she had the main porphyria and didn't know what they were from. My aunt's legs were completely paralyzed and she had to be carried everywhere, my other aunt had the same bouts of throwing up/abdominal cramping and had to go away for a few years since she couldn't care for her kids.

    My cousin, laid around throwing up bile, she could not metabolize food so threw it all up and became painfully thin and paralyzed in her legs, was in and out of hospital, then finally got better and the best doc in the world told her "once you recover you won't get it again". Within a year she got it again, was in and out of hospital and died really of malnutrition from not being able to metabolize food.

    My other cousin finally pulled out of it, I think just got lucky, but was put on a diet of all carbs and natural honey, which she still eats today.

    Our whole family was tested back in the 1970's, and my Dad and I came out OK, but I sure wonder how good that test was and if porphyria has anything to do with my CFS. Please let me know if there is research someplace.

    Hollie
  4. simonedb

    simonedb Member

    HOllie
    thanks for the info
    argh, I wish I had med/chem background. I could have been having acute porphyria 20 years ago when and after they performed a cholecystetcomy on me. A combination of trying prozac for angst, erythomyocin for rosacea and too much sun and dieting could have been a bad combo then started having gallstone sx so surgery recd and thats like insult to injury.......since then disabled halfway.
    Someone posted about POTs on here this weekend and reminded about Primary Biliary Cirrhosis too and how all these things tie in with autoimmune probls and can even explain neck pain possibly (although I think i have a neck injury/dysfunction separately that complicates things).

    I am curious about the carb diet for Porphyria, as that is what I would prefer, but a lot of the time I have fought it because of the warnings with cfs to go on the dysglycemic diet and moderation with carbs etc but when I have gotten sun poisoining 3 in the last 11 years it was sugar and carbs that saved me a little. Its confusing cus with cfs fm its usually rec'd to moderate with carbs but lately I was thinking maybe I should go with it, feel better if do, still want vegies and protein/meat but allow more carbs too. I sure wish there were more experts mentors docs whatever to go to to sort this stuff all out.
    Anyway, I wonder if Primary Biliary Cirrhosis could be brought on by porphyria. NOt that I know if I have that but there was no reason for my gall bladder to go when I was 29 as I was a fitness freak, in best shape of my life, and since then liver has to do job of both and then i somehow turn up with a fatty liver per ultrasound 5 years ago although i dont drink or smoke and eat real healthy......huh?
  5. hollie9

    hollie9 New Member

    When in porphyria the Australian doc told me cousin to eat all carbs. Lots of bread, fruit, veggies, rice and lots of tablespoons of natural honey each day. She still eats more fruit than anyone I've ever seen and she doesn't like meat/fish much. She now eats a lot of tortellini soup. But when dying from porphyria it is ALL carbs.

    I didn't look up your type of Cirrhosis but assume it is liver problems. I did read that porphyria can cause liver tumors and probably other problems later in life. My aunt, who had porphyria, got a tumor on her liver when she was 85. It does take a toll on the liver. There are many types of porphyria so hopefully any experience with it was not the acute type that haunts my family.

    I've had CFS for 15 years and continually trying to lose weight. I just got off the Dukan diet which is all protein and non fat dairy, it made me feel so bad. I've low carbed it most of the time but for the last few months have added more carbs to my diet, now eating more carbs than protein. I feel good, better than on all the protein but nothing that cures me. I've never found a diet that helps my CFS, gluten free didn't help, no dairy didn't help. I eat healthy.

    Sorry for all your health problems. In reading on the internet it sounds like there are some tests for it now.