Announcement

Collapse
No announcement yet.

Pyroluria?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Pyroluria?

    I had some recent experiences involving my son that I would like to share with you all. I recently took my son to a clinic called the Pfeiffer Treatment Center. It's a clinic that specializes in the treatment of most mental illness, autism, and ADHD with vitamin and nutrient therapy. They've been doing it for about 30 years and boast very high success rates. My son has ADHD the inattentive type. It's pretty severe and while he's on Ritalin (and we have had great success with it) he also continues to have some problems. He remains forgetful and still struggles a little in school.

    The clinic did a gamut of blood work and also tested his urine. They were very thorough. The results showed the following: elevated copper, zinc deficiency, low histamine, pyrrole disorder, and a suboptimal level of vitamin D.

    Pyrrole disorder (pyroluria) is characterized by an excess of kryptopyrrole molecules. Kryptopyrole is a byproduct of hemoglobin synthesis. It binds with Vitamin B6 and with available zinc, thus causing a depletion of both. Zinc and B6 are essential in supporting neurotransmitters.

    It's not often recognized by the traditional medical community. But it is also not argued. They just choose to ignore it. I don't think they can argue it, since there is a specific lab test to diagnose it. I guess there's no money in supplements? . Many people might be getting missed who have this diagnosis. People usually get better if following a good treatment protocol of specific vitamins. The lab test this clinic uses is a urine test. Only 5% of the population will test with higher than normal kryptopyrroles, but up to 40% of alcoholics will test positive for pyroluria. One of the main symptoms of this disorder is a lifetime of severe and pervasive anxiety. Many alcoholics self medicate this anxiety with booze. Other disorders can be present too (ADHD or even schizophrenia).

    My son's kryptopyrrole levels were quite high, and it is a genetic disorder, so I am quite certain where it came from. I plan to be seen at the clinic myself in the near future. In the meantime, I have upped my B6 and zinc. They had me do a lengthy health questionaire, in which part of it was conditions in the family tree. I could see right down the line in my family the people who likely had it. They all turned into alcoholics.

    They've given me a print out of exactly what they recommend him to take. They will compound his supplements in their pharmacy (if I so choose. I could do it on my own as well.) There will be an am and pm formula along with some other supplements they think he should take separately. It's quite a list, so I'm grateful they make it in one pill. He could never swallow all of these things separately.

    They say it can take up to 3-4 months to see results of this vitamin therapy, some say even up to a year for full effectiveness depending on how bad ones deficiencies are. I am hopeful I'll be able to go down on his Ritalin eventually, or even stop it altogether when we get his imbalances corrected (they will continue to measure his levels as he will be taking a lot of zinc.) They've also recommended a gluten free/casein free diet, and we are well on our way there. Casein is out and he's pretty much off gluten now too (we all are!).

    I just thought I would share our experience. Just in case it could help someone else.

    Redhead
    This Princess Saved Herself

    #2
    Pyroluria?

    Hi Red, thanks for this. You and I have shared about our suspected pyroluria before. I have low zinc and B6 (thus I supplement both) and have other symptoms of pyroluria including the horrible HAIR LOSS. I agree this is part of my issue. The only characteristic I don't have that most pyroluriacs have is high copper - mine is low.

    I'm on 100mg zinc a day, what is your son being given? Are you testing yourself or taking the same nutrients?

    Comment


      #3
      Pyroluria?

      Hi Bruun,

      Yes, so his results finally came in. I know I've written about this on my thread, but I thought it might be better here. I'm waiting for our next appt to discuss the results, but their recommendations for him are this (per what they sent me in the mail with all his lab results).

      AM compound:

      250 mg Vitamin C (corn-free)
      200 mg B-6 (this is a ton of B6 for a kid, but I know they know what they're doing)
      50 mg P5P
      300 mcg Biotin
      1000 mcg B12
      25 mg Niacinamide
      50 mcg Chromium Polynicotinate
      100 mg Magnesium as glycinate
      250 IU Vit.A
      50 mcg Molybdenum
      10 mg Thiamine
      10 mg Riboflavin-5-phosphate
      10 mg Pantothenic Acid

      PM compound:

      500 mg Vit C
      50 mg Zinc as picolinate
      10 mg Zinc as citrate
      10 mg Manganese as gluconate
      200 IU Vit E
      300 mcg Biotin
      25 mg Niacinamide
      50 mcg Chromium Polynicotinate
      50 mcg Molybdenum
      25 mcg Selenium as selenomethionine
      400 IU Vit D
      50 mg N-acetyl-cysteine

      They will compound those recommendations into two different capsules. An AM and a PM formula. They also recommend he take GABA 500 mg twice daily, 1 gram of Evening Primrose Oil daily, and ProDHA Junior (Nordic Naturals) which is fish oil for kids. He'll take two caps twice a day of that. We are to start that after two months though, and actually work up with the fish oil. He's supposed to obviously be on his gluten-free/casein-free diet, but avoid artificial colors, flavors, and sweetners (I already figured that and we do). Also, I've long suspected he's hypoglycemic (I am) and I found it interesting they want him to be following a hypoglycemic diet too. Frequent high protein snacks every 2-3 hours. And epsom salt baths nightly as well.

      He's getting used to swallowing these capsules, but luckily they can be opened and put in apple sauce or yogurt (dairy free yogurt of course ). Sometimes he doesn't want to swallow them. He'd already been on some of these supplements (what they call their primer-it's lower doses of zinc and B6 and a few other things, the GABA, and the Evening Primrose Oil. We can tell a difference in his behavior after the last 6 weeks or so.

      I take some of this stuff already, but not all of it. I have upped my B6 to 200 mg a day and my zinc picolinate to 50 mg a day. I'm sure this isn't enough for me of either. It's actually what's been suggested for him and he's only 62 pounds or so. I'm just always so worried about over doing zinc. I'll be making an appt soon myself. It's the only way I'll know what exactly I need, and they can't tell until they do my lab work.

      I'm pretty excited about all of this. For him and for me!

      Thanks for asking, my friend. :l
      This Princess Saved Herself

      Comment


        #4
        Pyroluria?

        How do you know how much zinc to take, Bruun?
        This Princess Saved Herself

        Comment


          #5
          Pyroluria?

          And has it helped with your hair loss?
          This Princess Saved Herself

          Comment


            #6
            Pyroluria?

            This is very interesting! Thanks for sharing. I see that the treatment center is in Chicago. I wonder if my family doctor can run these tests. I have a physical scheduled in a few weeks. I think I'll ask. ADHD and ADD are prevalent in my family. I hope both you and your son have great results! Vitamins are certainly better than Ritalin....been down that road with my son in his teens.
            "Leap and the net will appear." - John Burroughs

            Comment


              #7
              Pyroluria?

              Great info. Thx Red!
              12-20-2012 AF
              Respect yourself enough to walk away from anything that no longer serves you, grows you, or makes you happy.

              Comment


                #8
                Pyroluria?

                Hi Red, thanks for posting all that info. I guess I should get my axe down to Pfeiffer next time they're in town. I didn't see improvement in my hair but I didn't stick with the regimen more than three months. Too much alcohol and too many pills. Now I'm not doing too much alcohol but too many pills still stymies me as a daily regimen. I'd sure like them compounded into just a few pills! I could take five. My multi has alot of these supplements in larger doses. Hmmmm. I am taking the zinc again since reading on a hair loss site that zinc cured one of the women (womens hair loss project - google it if interested). Thyroid meds did nothing for my hair (porcine). Omega 3, B vitamins seem to help a bit sometimes. I go through a shed twice a year I guess? Then its really depressing. Right now you can see my scalp through my hair. I would be really good looking with hair!

                Comment


                  #9
                  Pyroluria?

                  Westiesrock, you can certainly ask your doctor about it (and I suggest you do), but they might not know anything about it. Unfortunately, he or she could give you the labs, but most likely wouldn't know how to treat you. I see you live in North Carolina, but if you could ever visit the clinic in person, it would be best. They see patients from all over the world (about 30,000 a year). It's hard to find specialists in vitamin and mineral therapy (that approach it scientifically. With research backing what they do.) You would only have to go once. Everything else is done by phone, if you so choose. Either way, I wish you great luck in finding the answers you seek. :l

                  Bruun, yes, maybe you could see them in their outreach clinic. I know it comes near you. I have an idea of what the hair loss feels like and it's such a killer on self-esteem. I lose tons of hair after I have a baby, and when I lose a lot of weight (I just recently put this all together.) The only difference is mine has always grown back in so far (but the reason I probably had this problem is due to a zinc deficiency that I wasn't aware of. It's normal to lose hair after having a baby and after weight loss, but I'm at the extreme of it.) It comes out in handfuls. Scares the hell out of me. Afterwards, I can see it's noticeably thinner. About a month later it starts to grow back, but can take up to a full year to be normal again.

                  If you think you have pyroluria maybe you should be taking more B6 too. I guess it's hard to know without a concrete diagnosis.

                  I did find out that zinc and B6 can cancel each other out. I was taking mine together when really they should be at separate times of day. I noticed even in my son's formulas they made his B6 in the morning compound and the zinc in the evening.

                  You aren't kidding with the pills. I so look forward to going and being given a list of what my body needs that they compound in one. Between baclofen and the vitamins I take...it's insane!
                  This Princess Saved Herself

                  Comment


                    #10
                    Pyroluria?

                    Hi Redhead--

                    I searched the internet for pyroluria and here I am. :-) I looked up the Pfeiffer Treatment Center and am thinking of going, but I'm worried about the cost, as it says it doesn't take insurance, I'm unemployed, and we fear my husband is about to be laid off. I could afford $500, but not, like, thousands. I know this is a sensitive topic, but could you give any information you would be comfortable with as to the fees the center charges? Did you ever end up going for yourself?

                    Comment


                      #11
                      Pyroluria?

                      Quanacridone,

                      I'm going to need to think of a way to shorten your name. Firstly, I'm sorry to hear that your husband may be losing his job soon. It's not a sensitive topic to me, so no worries there. It costs $800 to see them. Unfortunately, they don't take insurance because insurance doesn't pay them, due to the fact that they are 'alternative medicine'. (except for once in a while, it's a good idea to ask your insurance company.) Your insurance company will most likely cover all lab fees. My insurance company, which is rather picky, covered everything but $64.00. They do run a number of labs, so all the costs totalled about $900.

                      I have not gone myself. However, I've been in phone communication with the doctor who saw my son. She's offered to help me (since we are absolutely sure this came from me), free of charge until I'm able to go. I had already started taking some different things, like more zinc and B6. She helped me decide how much of both of those to take, and gave me a few other suggestions. I'm still planning to go one of these days. There are many nutrients that work synergistically with others. They are really good at determining specific amounts of what works. The doctor went over why they recommend certain things to my son in his multi, but I can't know exactly how to dose myself with everything.
                      This Princess Saved Herself

                      Comment


                        #12
                        Pyroluria?

                        Thank you so much for the kind words and information Redhead! (you and anyone else can call me Quin!) $900 is not too bad. Plenty, but not as bad as it could be. If's nice that the doctor who saw your son is offering to help you free of charge--that is a blessing. Sounds like a compassionate person who wanted to help you after you put your son first. I hope you find the supplements help! I am tempted to start zinc and B6 right away, but am now deliberately avoiding them to see what the test results are.

                        Wishing you the best and the good results you deserve--

                        Comment


                          #13
                          Pyroluria?

                          Hi Redhead! May I ask the name of the doctor you're working with? I realize it's been awhile since you started this thread. How are things going? Thanks and hope all's well!

                          Comment

                          Working...
                          X