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Pyroluria


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Steve,

 

I don't see the need to retest without supplements, as long as the supplements are keeping the pyroluria levels within fairly normal range, it really doesn't matter whether you have it or not, because you are already managing it with the supplements you are taking. Carolyn was just answering your question that yes supplementing can affect results, and she is right.

 

I had zinc and B6 deficiencies and didn't have pyroluria. My son did have pyroluria...his measurement was 60! As I have posted before, I think pyroluria is a secondary disorder caused in part by oxidative stress. We have been correcting the oxidative stress and the pyroluria went away. He only takes 33 mg total of B6/P5P now and 46 mg of zinc daily now, and his levels are consistently under 10.

 

I wonder why you are taking that much ALA though....Glad you are being watched by a doctor. ALA is quite controversial. Have you done the Spectracell.com FIA 5000 blood test for antioxidant and vitamin levels (no doctor's signature required, unless you want insurance to cover it). That would really guide your doctor as to exactly which antioxidants you are low in. It costs $300 though. There are other antioxidants that can help with oxidative stress that may not be so controversial... In particular, glutathione is a common one to be low in, it is not controversial and is very helpful.

 

Do you have issues with metals? If you haven't done the doctor's data hair test (www.directlabs.com), I recommend it, especially if you have been on antioxidants for ~3 months, as you would likely be excreting metals. It costs ~$90.

 

Claire

 

 

Hi Claire, I am taking the test again without supplements this next week. I guess the reason that I decided to take it again is that I want a firm understanding of why I seem to be so different from most everybody around me. (Except for my dad which I see as having a lot of similar problems as me.) I am a scientist at heart and like to get to a problem by really understanding what the root cause is. I am about 95% sure that my problem (and my father's) is due to pyroluria. I don't expect the next test readout to show extreme pyroluria when I retake it because it takes a while for effects of antioxidants to wear off but I am guessing it will show a higher reading which will then confirm my suspicions.

I do have issues with metals which is why my doc put me on NAC and glutahione (from what I've read though glutathione in pill form is not well absorbed.) I also did a liver detox profile and it showed that I was low in glutathione.

I think most of the controversy around ALA stems around the fact that if you take too much of it metals get shuffled around in your body and can end up in tissues and worse spots than where they were initially. While that might be true for people with severe metal problems, my dr didn't think that my metal problems were too severe. So along with the supplements I already mentioned I also take Chlorella and have seen great improvement.

I hadn't heard about the Spectracell test i think I will look it up.

Glad to hear about your son. How old is he and how long did it take for him to get his levels down to normal? What antioxidants have you been giving him?

-Steve

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Steve,

 

It took 1 year to bring down the mercury levels in his blood. 18 months for his hair also. We just ran a urine test (new...Kim posted on it) and will see on that.

 

We were initially giving cysteine and ALA because he was deficient in both, plus melatonin. We have stopped all 3 since then. He was (is?) low in it glutathione, and the pills never raised the levels and I am just finally getting him to do the lotion (after 2.5 years). He is almost 13 and has a mind of his own on things. We do still give lots of different vitamins.

 

If you have read my other posts, my son hasn't ticced once since November 2003. He only ticced from CRT screen (and movies) exposure, but with these treatments, that doesn't seem to be a trigger now, as they were for the 2 years prior to that. Though he only ticced actively for 2 months because we removed CRT screens, and only 'retested' the trigger every 6 months.

 

Do let us know on the pyroluria...

 

Good luck.

Claire

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My family has pyroluria and one side effect of the condition is blood clots. Studies have shown blood clots to be related to B6 defficiencies. I have survived a pulmonary embolism and have been on a health quest ever since. Four members of my family have had some type of blood clotting issues. For the past year, visits to a doctor that does live blood analysis have shown severe plattelete aggregration (red blood cells sticking together) along with a host of other problems including digestion and physical stress. After adopting the recommended pyroluria therapy on another web page, my latest live blood analysis was perfect. The doctor told me with blood like that, there's no worries about blood clots and I didn't need to come back for another visit. I'm am so happy that I don't have to be on coumadin for the rest of my life as the side effects of that treatment are pretty severe. The supplements I take daily are as follows:

 

Waking

Solgar megasorb B-complex "50" 1 tablet

North American Herb and Spice Purely C 2 capsules (whole food source of vitamin C)

Zinc gluconate (seems to work best) 50 mg.

Manganese gluconate 50 mg.

Udos choice enzyme blend 1 capsule

NOW N-Acetyl Cysteine (NAC) 1 capsule

Solgar P-5-P 50 mg.

Solgar Magnesium Citrate 200 mg.

Nature's Plus children's chewable multi vitamin (low dosage seems better)

 

Mid Morning

North American Herb and Spice Purely C 2 capsules

Zinc gluconate (seems to work best) 50 mg

Udos choice enzyme blend 1 capsule

Now NAC 1 capsule

Solgar P-5-P 50 mg.

Solgar B6 50 mg.

Solgar Magnesium Citrate 200 mg.

 

Lunch

Udos choice enzyme blend 2 capsules

 

Mid Afternoon

North American Herb and Spice Purely C 2 capsules

Udos choice enzyme blend 1 capsule

Now NAC 1 capsule

Solgar P-5-P 50 mg.

Solgar B6 50 mg.

Solgar Magnesium Citrate 200 mg.

 

Dinner

Udos choice enzyme blend 2 capsules

 

Bedtime

Kyo-Dophilus 1 capsule

organic aloe vera juice 2 oz.

 

I feel better than I did in my twenties. I am still experimenting with the NAC since this is the first one I've tried but it seems to work pretty well. Hopefully this will help someone else avoid the long search I have been on to feel better.

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Thanks Claire for your help. I retook the Pyroluria test after about a week off the zinc, B6, and the antioxidants and the results were pretty much the same, 15. So I am not sure if the test is really flakey or if I just have some general malabsorption syndrome. I checked for intestinal permeability and also for stomach acid levels and both came back within normal so I am wondering if there is something else that can cause malabsorption. I have been taking about 110 mg of Zinc every day for over a month and have noticed many positive results. even my body temperature has risen to nearer the normal range!

 

Hi Morasp, Wow it sounds like you have been through a lot and have persevered. I love it when I hear people fixing their health through nutrition and not through the latest drug pushed onto them by the pharmaceutical industry. You know about the blood clotting problems I have also experienced the same thing previously. Last time I experienced it was last spring when I was eating a lot of strawberries which I read contain a lot of salicylates and can cause problems for people with detoxification problems.

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Steve,

 

Since you took the test without the zinc and b6 this would be your baseline. From what I understand, this is your 2nd pyroluria test. After the first pyroluria test, your supposed to remain on the zinc and b6 for testing.

 

I would give it three months in between testings. I first tested in the December of 2004 with a result of 20. Three months later my result was 5. Five months after that it was at 3.5, and I haven't retested since then. I don't know what my result would have been after a month of supplement. Also what form of zinc are you taking?

 

Carolyn

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Steve,

 

Since you took the test without the zinc and b6 this would be your baseline. From what I understand, this is your 2nd pyroluria test. After the first pyroluria test, your supposed to remain on the zinc and b6 for testing.

 

I would give it three months in between testings. I first tested in the December of 2004 with a result of 20. Three months later my result was 5. Five months after that it was at 3.5, and I haven't retested since then. I don't know what my result would have been after a month of supplement. Also what form of zinc are you taking?

 

Carolyn

 

 

I am taking zinc picolinate/gluconate mix. I used to take it with meals (tried to take it far from fiber though). I now take it between meals because I used to find that I would get stomach upset if I took it on an empty stomach but not anymore.

 

Another question is has anybody ever tried the Zinc taste test? I have been taking about 110-120 mg Zinc per day and still cannot pass the test. I am wondering if the test doesn't work that well but from what I read just searching around it is supposed to accurately predict your zinc status pretty well.

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Another question is has anybody ever tried the Zinc taste test? I have been taking about 110-120 mg Zinc per day and still cannot pass the test. I am wondering if the test doesn't work that well but from what I read just searching around it is supposed to accurately predict your zinc status pretty well.

 

Zinc Status works. You are still deficient. I took about 600 mg. of zinc everyday for more than a year to correct my deficiency. It can take an extremely high dose or just a long time to correct that deficiency.

 

The test works and that is why I recommend it to people. Some people think that if they are supplementing zinc then they should NOT have a deficiency anymore. It does not work that way. When you taste that stuff you will know that your deficiency is corrected, but it can come back again, if you miss a dose. Zinc Status is a useful tool for people to have on hand to check their zinc status if they have any type of nutritional problems.

 

 

CAUTION NOTE ADDED BY MODERATOR: PLEASE NOTE: 600mg of zinc per day is considered a TOXIC DOSE. No-one should attempt to consume such a high level of zinc without comprehensive doctor supervision!

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Hi Morasp, Wow it sounds like you have been through a lot and have persevered. I love it when I hear people fixing their health through nutrition and not through the latest drug pushed onto them by the pharmaceutical industry. You know about the blood clotting problems I have also experienced the same thing previously. Last time I experienced it was last spring when I was eating a lot of strawberries which I read contain a lot of salicylates and can cause problems for people with detoxification problems.

 

Yes, I found out about the B-6 blood clot thing while researching DVT and Air travel. Here is the article:

 

 

Vitamin B6 and "economy class syndrome"

 

MILANO, ITALY. Blood clots in the legs (deep-vein thrombosis) are a major cause of pulmonary embolism – a condition in which a blood clot lodges in the pulmonary artery. Pulmonary embolism is a very serious disorder that kills about 200,000 American every year. One of the main causes of vein thrombosis is immobilization, that is, lying or sitting still for extended periods of time. The condition is often found in hospitalized patients and, to an increasing degree, in long-distance air travel passengers particularly those crammed into economy class; hence the term "economy class syndrome".

Several studies have shown that deep-vein thrombosis (DVT) is associated with a high blood level of homocysteine, a sulfur-containing amino acid also implicated in the development of atherosclerosis. Researchers at the University of Milano now confirm this connection with a new study that also clearly shows the potential protective effect of vitamin B6 (pyridoxine). The researchers compared blood levels of homocysteine, folic acid, vitamin B6, and vitamin B12 in 397 patients with previous DVT and 585 matched healthy controls. After adjusting for confounding variables they determined that the incidence of DVT was twice as high among the participants with high homocysteine levels as among those with lower levels. There was no association between DVT incidence and blood levels of folic acid and vitamin-B12. The association between low levels of vitamin B6 and an increased risk of DVT was, however, quite strong. The participants with low vitamin B6 levels (less than 33.2 nanomol/L of pyridoxal-5'-phosphate[PLP]) had twice the risk of developing DVT than did people with PLP levels above 46.5 nanomol/L. The researchers point out that vitamin-B6 supplementation has been found to inhibit platelet aggregation and prolong bleeding time as well as protecting against heart attacks and atherosclerosis. Further studies are underway to determine if vitamin B6 supplementation can help prevent DVT.

Cattaneo, M., et al. Low plasma levels of vitamin B6 are independently associated with a heightened risk of deep-vein thrombosis. Circulation, Vol. 104, November 13, 2001, pp. 2442-46

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