Pyroluria?

Discussion in 'Fibromyalgia Main Forum' started by anneW, May 6, 2003.

  1. anneW

    anneW New Member

    Does anyone out there have any info on pyroluria?
    I just discovered it and think I may have it.
    I understand it is kind of rare.
    I am going to see my doctor on May 23rd
    so just looking for more info.
    Anne
  2. victoria

    victoria New Member

    Someone I know is recently diagnosed with Pyroluria, I did a search on the message board here and yours is the only post that came up about it... and there's nothing in the library here about it at all.

    It sounds SO MUCH like CFIDS!!!!! Like some other diseases such as hemochromatosis, but I figure the more one rules out, the better.

    Did you have it? If so, what did you do to remedy it, and did it work? From what I read, it was to take B6, manganese, and zinc, sounds like you'd have to have your blood levels monitored?

    For those who don't know what it is, this is info from diagnose-me:
    ------------

    Pyroluria is a familial disorder which occurs with stress, where an above-average amount of a substance consisting of "kryptopyrroles" circulate in the body.

    The substance is harmless in itself, but high levels of these pyrrolles systemically bind with B6 and zinc, preventing the use of these essential nutrients in the brain and body.

    The result is a myriad of symptoms, including severe inner tension, ongoing anxiety, poor stress control, fearfulness, and sometimes episodic anger.

    Please note that it is extremely important to obtain an accurate diagnosis before trying to find a cure. Many diseases and conditions share common symptoms: if you treat yourself for the wrong illness or a specific symptom of a complex disease, you may delay legitimate treatment of a serious underlying problem. In other words, the greatest danger in self-treatment may be self-diagnosis. If you do not know what you really have, you can not treat it!

    Often such people have pale skin that easily burns, eyes that are sensitive to light, white flecks/marks on their nails, and stretch marks on their skin. They tire easily, are anemic, have poor dream recall, prefer not to eat breakfast, notice upper abdominal pain when stressed, and experience a "stitch" in their side if they run.

    They have a tendency to become loners as they age. Mental symptoms are aggravated when undergoing stress. In fact, pyroluria flares up when the individual is undergoing prolonged stress, such as during a chronic and debilitating illness.

    Pyroluria may occur along with other imbalances as seen in some subtypes of schizophrenia such as histapenia (low histamine), histadelia (high histamine), high copper levels or cerebral allergies. It is the primary imbalance for 20% of schizophrenics.

    Alcohol use is one way for pyrolurics to shut off their anxiety, feel more sociable, destress, and experience a short time when they feel more normal. (altho from what I've read, it doesn't mean one has to be an alcoholic or even drink necessarily -Vic.)

    Without a knowledge of this chemical imbalance, those who try to quit alcohol use must face coexisting with their symptoms. If additional antianxiety support is needed, GABA, tryptophan, chromium and inositol should be considered.

    There is a urine lab test available which measures levels of kryptopyrroles. Any alcoholic, or anyone with symptoms indicating the possibility of this condition should have the lab test done.

    Pyroluria is treated by restoring levels of vitamin B6 and zinc so that this double deficiency is corrected. Supplementation with vitamin B6 until daily dream recall returns (a normal phenomenon) as well as with zinc and manganese needs to be continued daily.

    With zinc, manganese and vitamin B6 therapy the pyroluric patient may start to respond in 24 hours and certainly some progress is noted within one week. However, total recovery may take three to four months. The biochemical imbalance and symptoms will usually recur within one to two weeks if the nutritional program is stopped. [Pfeiffer, 1974]

    ---------------

    All the best,
    Victoria

    [This Message was Edited on 01/29/2007]
  3. Slayadragon

    Slayadragon New Member

    This is a test that a doctor specializing in pyroluria showed me how to do.

    Holdi your left hand out in front of you.

    Keep your first knuckles (the ones that connect your finger to your hand) of your four fingers straight.

    Bend the second knuckles of all of your fingers. Bend your forefinger as much as possible.

    Look at your forefinger and see if the bottom section (above your knuckle) and the top section (with your fingernail) can touch.

    Repeat this process with your right hand.

    If you can't touch the top and bottom sections of your fingers (i.e. if there is more than a slight gap), it theoretically means you are low in vitamin B6. Low B6 is, I believe, the definition of pyroluria.

    If this is the case, you may be more inclined to irritability, depression and other mood problems, as well as fatigue. Other problems may result too, although I've read less about them in conjunction with this problem.

    If you want more B6, it's usually given in pyridoxyl-5 phosphase (P-5-P) form. Pure Encapsulations (a reputable supplements company) recommends 50 mg, one to two times per day for general supplementation.

    Too much plain Vitamin B6 has the potential of making your fingers numb. I think that 50 mg of P-5-P is supposed to equal 500 mg of regular Vitamin B6, without the side effect. A smaller amount of plain B6--like 50-100 mg--is often used as an addition to the P-5-P.

    I believe I recall being specifically instructed to decrease dosages of B6 (or P-5-P) if numb fingers result. I certainly would do so myself regardless.

    Taking a B Complex along with the P-5-P (and B6 if used) is highly recommended.

    You should be able to see progress in terms of the "finger test" in several weeks, if supplementation is working.

    This is not a cure for CFS, obviously. B6 deficiency generally causes irritability. (My doctor recommended B6 supplementation after I started birth control pills in college and got irritable, for example.) That symptom is not even especially correlated with CFS.

    However, vitamin deficiencies never help anything. If you have one, you might as well think about addressing it.

    I know about this because about a month after I got CFS, I went to a clinic run by an MD that addressed B6 and zinic as amongst their major treatments. (They used this protocol for B6. For zinc deficiency, they looked for white spots on fingernails.)

    That experience was not worth the money I spent on it, but I was new to CFS and wasn't sure what to do.

    I do still take P-5-P though. It's apparently a problem for me, causing irritability. My fingers stop being able to touch if I forget.

    Adrenal testing and supplementation was the next thing I did to help my CFS. This was about a month later, and that helped _tremendously_. bigmama2's experience was very similar to mine in terms of the results I saw.


    NOTE:

    MY INTENTION IN POSTING ON THIS BOARD IS ONLY TO SHARE MY OWN EXPERIENCES, PROVIDE OBSERVATIONS ABOUT OTHER PEOPLE'S EXPERIENCES, AND REPORT COMMENTS OFFERED BY MD'S AND OTHER MEDICAL PROFESSIONALS.

    IF I SEEM TO BE OFFERING MEDICAL ADVICE OF THE SORT THAT AN MD SHOULD, THIS IS UNINTENTIONAL. PLEASE DON'T FOLLOW IT.


  4. victoria

    victoria New Member

    Interesting test - my left forefinger is 'perfect', my right does not touch tho not sure it'd be called 'significant' gap; wonder what the reliability of the test is compared to urine/blood results?

    The urine test for pyrrholes is about $50 plus the expense of sending it overnight - not bad, have had worst expenses for sure! - but not sure if that would be the only test needed or if the blood tests for manganese and zinc would also be needed to just double/triple check... haven't really found any definitive info about this part.

    The doctor at 'brightspot' labs is available to talk to anyone for free between 5-6 pm central time, I am thinking I am going to try to call this evening to see what he says (if all 3 are really necessary or not). It'd be interesting to not only get my self tested, but also my son as we do know for sure he has Lyme, but he also some of the signs of pyroluria..

    even tho I strongly feel the Lyme is heavily imbedded in his brain, due to his responses/herxes to treatment, who knows what else may be playing a part in all this.

    best,
    Victoria


    [This Message was Edited on 01/29/2007]
  5. Slayadragon

    Slayadragon New Member

    The place I went to did lab tests as well as this "finger" test, and thought that the latter was more reliable.

    I don't know if they were right though. God knows doctors can be wrong about things.

  6. victoria

    victoria New Member

    I talked with the doctor tonight at brightspot.org and according to him, the urine test for pyrrholes is about 90% accurate; he didn't feel additional tests for zinc & manganese were necessary since blood levels could be fine but doesn't measure what's actually happening in the body's tissues. (Gee, where have I heard that before lol!)

    Lisa, I forgot to ask him about that finger test, would've been interesting to hear his response, oh well.

    More info:

    Common emotional and physical characteristics of pyroluria.

    Little or no dream recall
    White spots on finger nails or light nails
    Inability to eat breakfast +/- morning nausea
    Dry and pale skin +/- do not tan +/- burn easy in sun
    Sensitivity to bright light
    Hypersensitive to noise
    Argumentative/enjoy argument
    Mood swings and emotional outbursts/temper
    Preference for spicy or heavily flavored foods
    Histrionic (dramatic)
    Anxiousness
    Abnormal body fat distribution (e.g. protruding abdomen)
    Poor short term memory
    Frequent headaches
    Poor ability to cope with stress
    Much higher capability & alertness in the evening, compared to mornings
    Reading or writing disorder/difficulties
    Significant growth after age 16 or stunting of growth
    Sleep deprivation
    Sweet acetone breath
    Abdominal pain

    Articles:

    Pyroluria: Hidden Cause of Schizophrenia, Bipolar, Depression, and Anxiety Symptoms by Woody McGinnis, M.D.
    Commentary on Nutritional Treatment of Mental Disorders: Pyrrole Disorder by Willam Walsh, Ph.D.
    Pyroluria by Carl C. Pfeiffer, Ph.D., M.D.
    Pyroluria by Jeremy E. Kaslow, M.D., F.A.C.P., F.A.C.A.A.I.
    The Analyst: Pyroluria


  7. Slayadragon

    Slayadragon New Member

    That list is consistent with my own understanding of pyroluria, which is that it's much much more like a mood disorder (these are all signs of mania and/or depression) than CFS.

    The place I went was associated with Pfeiffer, btw.
  8. victoria

    victoria New Member

    Even tho I've not been ever dx'd with a mood disorder, I can readily identify 7 strong symptoms out of the above list...

    According to the info so far that I've read, while pyroluria IS more often associated with mood disorders, one can have any one or more symptoms ...

    so I figure it's worth the $50/test just to rule it out, even tho I know it's a longshot.

    Knowing me, it'd show up 'atypically'... kinda like my son who had neuro symptoms of lyme before the physical pain showed up... atypical responses seem to run in my family genetics I think!

    best,
    Victoria




    [This Message was Edited on 01/29/2007]