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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by MoparFan91 on July 7, 2006, at 3:11:47
I suspect that I may have this and may have always had it.
I have possible hard evidence to prove that I could have this. You know, based on research, how Pyrolurics are supposed supplement with Zinc, B6, and possibly Omega 6 and other augmenting nutrients?
I had a Red Blood Cell Elements test done at the end of March.
As far as my supplements, I had been taking 1,200mg of Magnesium Glycinate,
300mg of P5P (active form of B6),
little bit of 5-htp,
and 6 capsules of Country Life High EPA Omega 3 (getting 3 grams of pure EPA),
225mg of Zinc,
10,000mcg of Methyl B12My medications I was taking were 400mg Lamictal, 300mg Topamax, and 20mg Lexapro.
My Elements test results showed that, despite taking 225mg of Zinc, my zinc levels were only in the low end of normal! :-0
That's surprizing! Apparently, I have to take a load of Zinc to keep my levels just in the lowend of normal. So, I raised the amount to 300mg.
I'm even taking an Amino Acid Chelate capsule form, which is a well-absorbable form.Also, my Magnesium levels were in the low end of the normal range as well despite taking 1,200mg a day for months. I've been using the Magnesium Glycinate form.
Calcium levels were on low side as were potassium and phosphorus.
And my copper levels were above normal and high.
Selenium levels were on high side as was Chromium to a lower degree.
I had toxic metals checked (mercury, cadmium, nickel, arsenic, etc.), and although they weren't at toxic levels, they "were" high enough to show up on the sheet as being in the higher percentiles.
I had my thyroid TSH level tested, and it was 1.61.
When I had the test done, though, I was going through an unstable period, and a very severe depression. I was in the middle of a deep low while inside the lab getting the test done!
I have a diagnosis of Aspergers syndrome (aka as high functioning autism), OCD, and bipolar disorder. My bipolar is the rapid cycling style, and I can swing up to several times a day depending on triggers.
I suspect that my primary (if my only) chemical imbalance is Pyroluria.
I had read up a lot on this, and I fit at least 80% of the symptoms.
So, I wanted to give a run-down on these symptoms and check what I have and don't have.
All of my life, I have had the following symptoms of this:
MENTAL
-Reading disorders - problems with reading comprehension when growing up. :CHECK:
-High Anxiety - I have always had trouble with anxiety problems such as social anxiety, thought-loops triggering anxiety, and a general feeling of being "scared", esp. along with depression. The high anxiety would come along with so-called mixed states. :CHECK:
-Mood Swings & Emotional Outburts - I think this is manifested by my rapid cycling bipolar, as shown by the several times of day cycling, and this is presumably what gave me my diagnosis. I was diagnoses as bipolar at age 12 and put on Depakote. I was having the anger and emotional outbursts, and the drug helped with this at the time. Sources show that many pyrolurics are often diagnoses as "rapid cycling" bipolar. :CHECK:
-Histrionic/dramatic personality - I believe that when I speak, I come off as talking in a dramatic fashion sometimes. :CHECK:
-Ability to cope with stress - I have had big problems with this. When stress hits, I tend to go rock bottom to depression and I practically shut down & stall out. :CHECK:
-Sleep Deprivation - I have always skimped on sleep doing things like the computer/internet. I would have nights of getting 4-5 hours sleep/night. There would be incessant insomniac nights, too. :CHECK:
-Mood Response to SSRI's - They are positive, if the dose lower and it isn't too high, but later, I get manic and start to cycle moreso because the dose is pushed too high. Recent high dose Lexapro use (40mg of it) was a nightmare. :CHECK:PHYSICAL
-Unpleasant body odor - had it at times. :CHECK:
-Sensitive to bright light/loud noises - I used to be scared of fire alarms (buzzers) and balloon-popping. I would hold my ears. Still am somewhat at times. At times, loud noises would startle me. When I'm in my bad mood states, it would sound like noises would be amplified at times. As far as light, I would have to squint at the sun occasionally. :CHECK:
-Dry/Pale skin - I do have pale skin, and it sun-burns easily. Also, it is a bit on dry side. :CHECK:
-Stich in side - I often get this when running and always have. :CHECK:
-Inability to eat breakfast - I very rarely eat it, and I have had occasional morning nausea every once in a while. :CHECK:
-White spots on nails - I used to have these until I started my zinc supplements. :CHECK:
-Poor Dental enamel - My teeth, enamel-wise, do not appear to look the best in the world. They basically are not the whitest. :CHECK:
-Little or no dream recall - I never seemed to have a problem with this really. I've always recalled my dreams ok. :NO:
-Thin, prematurely gray/light hair - Don't have this. My hair is reddish and somewhat thicker side. :NO:
-Tendency for skin problems - I tend to scratch a bit due to itching. I itch frequently.
-Preference of spicy/heavily flavored foods - I LOVE hot and spicy foods. I often order the HOTTEST wings from restaurants that have chicken rings. Also, I like extra jalapeno peppers on my stuff. :CHECK:
-Abnormal Fat Distribution - I'm naturally slim. However, the fat I have, it is not distributed normally like a normal male. I seem to have a larger waist than normal for my body weight as I store much of my fat in my lower back. :CHECK:
-Poor Digestion - I've always had constipation problems. :CHECK:
-Frequent Infections - I have had ring worm before, the itching problems, and a problem with warts at one time. :CHECK:
-Low Appetite - My appetite is on low side naturally. The only time it's been really high was when I took Depakote for extended amount of time. :CHECK:
-Much higher capability/alertness in evening than morning - I have always been real tired getting up in morning, but when late day came, I was much energized. :CHECK:
-Significant growth after age 16 or stunting of growth - I think my normal muscle development and growth got inhibited during my early to mid teens as I was growing up. Also, I'm 22 now, and my frame still hasn't filled out as it still looks lanky. :CHECK:
-Frequent headaches - I don't have these frequently but have had headaches hit on few occasions at times. :NO:
-Tendency for Anemia - I've always had problems with fatigue in general and lack of energy to do stuff I wanted to do. :CHECK:So, with these, could I very well have Pyroluria as the chemical imbalance causing my psychiatric problems?
If you have any input on this, I appreciate it.
Sorry this was long, but I had a lot of information to post...
Posted by nolvas on July 7, 2006, at 4:51:10
In reply to Possible Pyrolura?, posted by MoparFan91 on July 7, 2006, at 3:11:47
Pyroluria is not a generally accepted medical condition. I have looked in to this and there's not enough evidence to suggest such a condition really exists.
Also the wikipedia entry for Pyroluria has been edited to remove negative views about this condition.
The theory behind Pyroluria is the underlying cause of the symptoms of Pyroluria are the nutritional deficiencies of Zinc and Vitamin B6 created by excess Kryptopyrrole binding to these nutrients.So the treatment is to supplement with Zinc and Vitamin B6. It is suggested to take the active form of Vitamin B6 > Pyridoxal-5-Phosphate is the active endogenous coenzyme form of Vitamin B6. It consists of 67.6% Vitamin B6 and 32.4% Phosphate. Known as P5P.
Posted by heaven help me on July 7, 2006, at 14:45:44
In reply to Possible Pyrolura?, posted by MoparFan91 on July 7, 2006, at 3:11:47
sorry, this is off subject. You are taking Lamictal AND alternatives?? I am interested in doing this. Do you know where I can find info? Do you have any cautions for me if I stay on the Lamictal I have been on 1 year (200mg) and start adding in alternatives?
Thanks so much!
Blessings
mary
Posted by Ed O`Flaherty on July 7, 2006, at 17:53:13
In reply to Possible Pyrolura?, posted by MoparFan91 on July 7, 2006, at 3:11:47
I am a family doctor in Ireland who happens to treat a lot of patients with psychiatric problems and autism by adding the appropriate vitamins,minerals,essential fatty acids and amino acids to the standard medication.I believe pyroluria is a really important and useful diagnosis and I do the test on most of those with psychiatric conditions and all of those with autism. The main investigation is a kryptopyrrole test which is done on urine as well as plasma zinc,serum copper and vit. B6. The diagnosis in this case is very likely to be a kryptopyrrole disorder (also known as pyroluria). Other important tests in psychiatry include complete blood count,biochemistry analysis,blood histamine, caeruloplamin,B12,folic acid,ferritin,thyroid tests such as TSH,T3 and T4,glucose,hair analysis,essential fatty acids and antigliaden antibodies for coeliac disease. 4% of schizophrenics have only coeliac disease- and if if is treated with a gluten-free diet the schizophrenia seems to disappear.I have one bipolar patient who responded beautifully too. Those on antipsychotics may have a negative kryptopyrrole result although they have the condition.Treatment involves zinc,B6,P5P,evening primrose oil,vit C (about 1g twice daily),vitamin E -about 400 units twice daily.A small amount of fish oil is usually needed too. Pyroluria turns up in depression and bipolar too,especially rapid-cycle bipolar.I myself do not take patients with a history of psychosis off their antipychotics-I leave that to the psychiatrists. Here is one of many cases I came across: 30 year-old female lawyer,recently married. Depressed for years,on fluoxetine. Did not like the husband to touch her but allowed sex once a month as she wanted to have a family and liked being married to the man she loved.Low libido. Tests were normal except for pyroluria. I started her treatment. A month later she was happy for the husband to touch her.A few weeks later her libido became normal,sex life was very satisfactory and a few weeks later she came off fluoxetine without relapsing into depression.See www.omega3.20megsfree.com for more details
Posted by nolvas on July 7, 2006, at 19:00:06
In reply to Re: Possible Pyrolura?, posted by Ed O`Flaherty on July 7, 2006, at 17:53:13
Thanks for your input it's encouraging :)
I have often wondered if I have pyroluria but there's is real negativity towards it from the medical community. Obviously not from yourself :) I notice there is some crossover between Pyroluria and Histadelia and Histapenia which confuses me a little. Are you able to pinpoint exactly which condition a person has through blood tests/urine samples?
Forgive me but this is slightly off topic but since I can see you value supplementing with Omega oils. I was thinking of supplementing with Omega 3 but I'm a strict vegetarian do you think I will still get some benefit from supplementing with Flax Oil (ALA)? I know the conversion of ALA to EPA and DHA is relatively low. I have anxiety with agoraphobia. I can't find a direct vegetarian source of EPA. DHA I can supplement using algae.
This looks promising though
http://www.nutraingredients.com/news/ng.asp?id=66482-eau-plus-omega-dha-algae
Posted by MoparFan91 on July 7, 2006, at 23:13:45
In reply to Possible Pyrolura?, posted by MoparFan91 on July 7, 2006, at 3:11:47
I think I have some undermethylation tendencies as well as I have OCD and get suicidal at times.
Symptoms I fit:
-Body Hair - I don't seem to have much given my age and male gender (22 years old)
-Anxiety tendencies where you're calm on outside but anxious on inside - When I get anxious, I appear relatively calm on the outside as if there's nothing wrong with me, but on the inside, I'm in turmoil, and I'm full of fear and anxiety.
-OCD Tendencies - I have tic syndromes, thought loops, compulsive behaviors, quadruple+ checking, ice-chewing habits
-Perfectionist - I like things to be neat and as perfect as possible. No chewing gum jobs.
-Warm/itchy skin - My skin tends towards warmer side, and I tend to get itchy at times. I have always had a habit of scratching due to itching.
-Low pain toloerance - I never have been able to stand pain. I would always be scared of anything that would produce it.
-Dry Eyes - No. My eyes would tend to get wet easily, esp. around onions and some other things.
-High Academic/Science Accomplishment - I had high academic accomplishment in high school as I took college courses and finished with 50 credit hours. Science/Math was the area that I was always strongest in, and literature/arts was the area that I was weakest in.
-High Motivation - I have always been self-motivated through school and at work
-Few Dental Caries - I never had any fillings except a few when I had baby teeth when a child.
-Low Appetite - My appetite naturally is pretty low.
-I react normally to anti-histamines
-Mood Response to AD's positive - Mood response is positive at lower dosages and/or when dose isn't too high, but I get manic and have cycle acceleration moreso when doses are pushed really high.
-Symptoms when Psychosis Present - Only delusional thinking. I never have nor had auditory or visual hallucinations.
My parents get on to me about the OCD sometimes and state that it's a bad case sometimes. Also, my friends talk about how I have to be perfectionistic about certain things and check over stuff I do more than necessary.However, I wonder if Pyroluria is my primary imbalance, though, as I have the most symptoms of those, like around 90% of them.
I already do take 2:1 Calcium/Magnesium Glycinate which is one of the hallmark supplements for undermethylation. The stuff I take right now for Pyroluria also happens to be beneficial for undermethylated (high histamine) persons.
Oh, I forgot to mention that I also take 3g of Vitamin C per day as part of my supplement regimen.
Also, there was mentioning that undermethylators should avoid Choline/Lecithin.
Well, I took that stuff one time and at pretty high doses. There were claims from pages that it would help with rapid cycling bipolar.
Well, it actually pitched me into a severe depression.
This was back after the 1st week of July. For the preceding two months, I had been doing fairly well on my medications and set of supplements. I was on just 200mg Lamictal by itself.
The Lecithin/Choline-induced depression got pretty bad, and I missed a week of work.
Once it was out of my system, the depression lifted.
Folic Acid as also 'appeared' to be a bugger for me. Everytime, for some reason, when I took it, I would get in these agitated mental fits having negative self-talks. My mother doesn't like me taking Folic Acid anymore.
So, could it be possible that I have some histadelic tendencies as well along with my possible Pyroluria?
Posted by Ed O`Flaherty on July 12, 2006, at 8:35:06
In reply to I may also have some undermethylation tendencies, posted by MoparFan91 on July 7, 2006, at 23:13:45
> I think I have some undermethylation tendencies as well as I have OCD and get suicidal at times.
>
> Symptoms I fit:
> -Body Hair - I don't seem to have much given my age and male gender (22 years old)
> -Anxiety tendencies where you're calm on outside but anxious on inside - When I get anxious, I appear relatively calm on the outside as if there's nothing wrong with me, but on the inside, I'm in turmoil, and I'm full of fear and anxiety.
> -OCD Tendencies - I have tic syndromes, thought loops, compulsive behaviors, quadruple+ checking, ice-chewing habits
> -Perfectionist - I like things to be neat and as perfect as possible. No chewing gum jobs.
> -Warm/itchy skin - My skin tends towards warmer side, and I tend to get itchy at times. I have always had a habit of scratching due to itching.
> -Low pain toloerance - I never have been able to stand pain. I would always be scared of anything that would produce it.
> -Dry Eyes - No. My eyes would tend to get wet easily, esp. around onions and some other things.
> -High Academic/Science Accomplishment - I had high academic accomplishment in high school as I took college courses and finished with 50 credit hours. Science/Math was the area that I was always strongest in, and literature/arts was the area that I was weakest in.
> -High Motivation - I have always been self-motivated through school and at work
> -Few Dental Caries - I never had any fillings except a few when I had baby teeth when a child.
> -Low Appetite - My appetite naturally is pretty low.
> -I react normally to anti-histamines
> -Mood Response to AD's positive - Mood response is positive at lower dosages and/or when dose isn't too high, but I get manic and have cycle acceleration moreso when doses are pushed really high.
> -Symptoms when Psychosis Present - Only delusional thinking. I never have nor had auditory or visual hallucinations.
> My parents get on to me about the OCD sometimes and state that it's a bad case sometimes. Also, my friends talk about how I have to be perfectionistic about certain things and check over stuff I do more than necessary.
>
> However, I wonder if Pyroluria is my primary imbalance, though, as I have the most symptoms of those, like around 90% of them.
>
> I already do take 2:1 Calcium/Magnesium Glycinate which is one of the hallmark supplements for undermethylation. The stuff I take right now for Pyroluria also happens to be beneficial for undermethylated (high histamine) persons.
>
> Oh, I forgot to mention that I also take 3g of Vitamin C per day as part of my supplement regimen.
>
> Also, there was mentioning that undermethylators should avoid Choline/Lecithin.
>
> Well, I took that stuff one time and at pretty high doses. There were claims from pages that it would help with rapid cycling bipolar.
>
> Well, it actually pitched me into a severe depression.
>
> This was back after the 1st week of July. For the preceding two months, I had been doing fairly well on my medications and set of supplements. I was on just 200mg Lamictal by itself.
>
> The Lecithin/Choline-induced depression got pretty bad, and I missed a week of work.
>
> Once it was out of my system, the depression lifted.
>
> Folic Acid as also 'appeared' to be a bugger for me. Everytime, for some reason, when I took it, I would get in these agitated mental fits having negative self-talks. My mother doesn't like me taking Folic Acid anymore.
>
> So, could it be possible that I have some histadelic tendencies as well along with my possible Pyroluria?
It is possible to have both Histadelia and Pyloruria-about 10% would overlap.Please get tests done for histamine and pyroluria
This is the end of the thread.
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