Claire

Unbelievable re lead paint on dishes...I thought that would be long gone....thank you Kim. Actually, it would be great if this WAS the source, then our problem would be solved. Anyway, I will get some glass dishes at Crate and Barrel this week..thanks Chemar! Claire

Hi all, *Does anyone have any idea of what type of plates are best (like stainless steel and iron for cookware)?* If you remember, my son, husband and I all have some blood lead. We only drink highly filtered water (R.O. + 3 carbon filters) and our water supposedly didn't have lead in it anyway. We sanded down some paint that likely had lead, and I assumed that was it, but that was 6 years ago, and we still have it, so I am looking at other sources. I looked at our plates and bowls which now have gray scratches all over them (meaning we are ingesting something) and it occurred to me that this could be a source. (Don't know the original content...these are Crate and Barrel/Target purchases, unlike our good china that we never use). FYI I just scanned Mercola and they talk about Perfluorooctanoic acid (PFOA) --the chemical used to make Teflon --in plate plates! We use these in the microwave, gotta stop now. Don't know what brand though. http://www.mercola.com/blog/2005/nov/21/du..._paper_products. Thanks, Claire

Kim, I haven't gotten the test back. I sent them out on 9/5 and they said it usually took 5 business days to get to France. So given it has been 10 days total (not business days), I may have another week...unless they do email. Our cost was only $228 for two tests (my son and I), or $114 each, so I have this feeling I may not have gotten everything I could have based on what you posted. I am glad to see that they could actually tell which metals from the results. I will note that coproporphyrin levels may indicate lead and 80 precoporphyrin levels may indicate mercury. You know once I get the results back I may need your help finding the sites. I do have a yahoo account that should work, so hopefully I can find the info... Of course I will post the results and then the analysis here. I haven't looked at any sites/notes yet...I am waiting for the results first. Well, if this test turns out to be what you and I hope it is, I (and others) will owe you many thanks for bringing it to this board. Too many false negatives with the serum metals and hair metals tests (though my son and I were positive on both of them). It would be great to find are non-invasive, more accurate method, with no doctor's signature needed! You know how strongly I feel that oxidative stress and metals are culprits for many of our kids. This would probably become the first test I would personally recommend...The food allergy testing is key to help accelerate healing, but you need to get to the cause of the immune system depression. I really believe that getting rid of my amalgams was huge for me. I meant to PM you that I also really, really appreciate your bringing the info on the directlabs.com site here. It allows me to keep up with monitoring my son's status with minimal effort. You know, my son is doing so well...he is taking on his homework with no pushing this year. He is more active and has more stamina. I still don't think his concentration is 100% of what it could be, but his health has come so far it is amazing. He barely had sniffles for a day (knock wood), where in the past it would have been bad bronchitis. How are your kids doing? Sorry, but I am in and out and don't read all the posts. Would you mind giving me a brief summary (or pointing me to a post) of where you are at in 1) diagnostics 2) treatment and 3) results? Claire

Alison, My son became more photosensitive over time (between age 8 and 10). A result of this was an increasing tic reaction to the same level of TV/computer that hadn't bothered him in the past. Something to consider. The light sensitivity can come from many things, as discussed in the past. Pyroluria, b2 deficiency, mercury... If it is pyroluria or mercury, then antioxidants should help...as they cause oxidative stress. I know your doctor didn't think mercury. I think that France mercury urine test that Kim posted that I did was only $112 US dollars (plus $2.50 for shipping). It shows oxidative stress and metals. No doctor's signature required. Claire

Yes Kim we definitely do the aluminum-free baking powder now! Carolyn, I think that is a good list of things to avoid with corn. Except I would add sorbitol, which is also derived from corn. Also Carolyn, here is a recipe for corn-free baking powder that we used successfully. I put it in an empty baking powder tin. I will say though that when we were egg-free, I was never happy with the egg substitutes... ----------- Corn-Free Baking Powder: Makes 1 2/3 cups 1/3 cup of baking soda 2/3 cup of cream of tartar 2/3 cup arrowroot starch Blend all ingredients together. Use in recipes calling for standard baking powder. ---------------------- Claire

Chemar, I didn't know oregano did those other things too, thanks. I wish he would take it, but he completely refused due to the strong taste. At least he is finally doing the dermal glutathione (the smell bothered him). I am thinking of getting Candida Clear for myself, and sticking it in with his pills once more just to see what he does. I KNOW he will notice though. Claire

Chemar, You look very exotic! (and beautiful too). Claire ps I got the good hair genes too. I thought it was all the vitamins (B12 in particular), but none of my siblings has it yet either. Knock wood, what a pain to color it.

We avoided corn and derivatives...e.g. sorbitol, baking power, guar or xanthum gum (can't remember which). It was HARD. But not as many as you have listed...sorry my opinion is that the list writer is overkilling there....really...they just put 'vitamins' down, not all vitamins have corn. Xylitol sweetener is from bark, so we use it, even now. Whole Foods is not corn-free by any means FYI. You are right re Van's...my son never had an sensitivity to soy (but yes to wheat, casein, corn, apples, almonds, eggs, etc...). Though soy isn't good for the adrenals, so we cook with coconut oil (gently refined...). Claire

http://www.amazon.com/exec/obidos/tg/detai...100673?v=glance I am pretty sure this is the cookbook that I used. It lists which recipes are gluten-free, sugar-free, dairy-free, corn-free, etc... You can search inside the book on Amazon. I finally made that Pamela's bread mix (with rice only) is great on day 1, and pretty good on day 2. (no corn). I don't know Miss Roben's products. We are back to corn now, and probably too much for him. I think Van's waffles have no corn. Claire

Carolyn, This is wonderful information for you to share. Glad you are monitoring things so closely! Re glutathione, you might want to ask your doctor about Kirkman's glutathione lotion instead of reduced glutathione. We did the reduced glutathione for a year with no change. I have read many places that it really is only absorbed well dermally. When we switched, my son's glutathione levels finally went up. The antioxidant glutathione is so important to moving metals and reducing oxidative stress. Even the DAN chelation protocol that someone posted (I think it was Sheila or Kim?) a while back showed they added the glutathione lotion to the standard chelation protocol. Interesting re the protein...what does your doctor say about Houston Peptizade? It is supposed to help with all protein digestion, not just gluten and casein. I give it to my son with eggs when I can. Though I haven't retested his amino acids in a long time (if you remember, he was deficient in them also). Interesting the other similarities, my son was low in bifido also. He also showed hyperinsulinism. I can't remember the fatty acid results, but he had issues when we tested back when. Claire

It depends on your insurance company. Ours paid for it. We like www.elisaact.com 's IgG blood test for food sensitivities (as opposed to food ALLERGIES which are IgE tests). Others have used Immunolabs. But if you don't have a doctor willing to order it...you can look at www.directlabs.com as they have an IgG food sensitivity test there, and no doctor's signature is required. Food sensitivities can trigger tics, but they don't always. Claire

Got this year's Spectracell test back. His antioxidants levels are ~50%...about the same as last year. But pretty cool cuz we don't supplement the cysteine and ala anymore. 50% is average but they want 75%. He is only deficient in pantothenic acid and co-Q 10...and just barely, only 1 point below 'normal' for each. But it says that pantothenic acid deficiencies can cause co-Q 10 deficiency. Also, the pant. acid deficiency can cause fainting, and he actually fainted a few times this summer, plus was light-headed a ton...more than normal, even with drinking lots of water, so maybe we found the cause. I only had a folate deficiency...an old deficiency that apparently returned...but my supplementation is less than the daily requirement, so not too concerning. I just added a light B-complex to my vitamin mix. My antioxidants were ~70% which is great. I am excited cuz it had been in the 30's the last two times, and the vitamin E deficiency was not corrected at the time with supplementation. I think that getting my amalgams out made a huge difference for me. Finally, I redid my own spit test for yeast, and still have the stringers, but less than before...improved. So this is good news overall. I sent in his and my mercury urine tests this week...only $2.50 to ship to France...only 1st class mail needed. At his October physical, I will try to talk the doctor into doing a Great Plains OAT test. Same with my doctor at my fall physical... I looked at the Candida clear by Now that Chemar recommended, but it has oregano oil, and though that is good for yeast, my son says the taste is too strong for him, bummer. I will try to get him to do the spit test this weekend...we will see. Claire

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

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

Kim, You know I don't read the board regularly, so this is the first I have seen of your question. We did urine testing through Great Plains...I think it was ~$200. Don't know which is most reliable, but both our DAN doctor and Pfeiffer were happy with the urine test as a measure of it. My son was (hopefully isn't) deficient in Lysine (along with others). But the Lysine deficiency fit so many of his issues at the time! Claire

Thanks Kim, you are very organized! Irena, Kim is right that Pfeiffer was my information source when I researched methylation. I just googled this site for the thread I started some time ago on it. It was confusing at best. Others added to it, which was helpful. http://www.latitudes.org/forums/index.php?showtopic=837 Somehow I remember them wanting to limit B3 if undermethylated. Anyway, the data is 2 years old and they may have changed their view. Claire

Chemar, Irena Irena, here is an old link I used when my son tested deficient in certain amino acids. http://www.moondragon.org/health/nutritionbasics/aminoacids/ He only had certain deficiencies, but I was told by Pfeiffer that the best solution was a balanced compound. I bought one, but when I looked at the small amounts I realized that I just needed to find ways to get more protein into him. I also use AFP peptizade to help with protein digestion. Also, I found this on niacin in my notes (no link...I don't always save links in excerpt that I save for myself) Q: How does high dose niacin (vitamin B3) fit in with methylation? A: Actually excess niacin is metabolized by methylation and thus uses up methyl groups. One source suggests to aim for under 75mg (usually ~50mg) of niacin+niacinamide per day from supplements. If you are taking large quantities of B3, please get your homocysteine and SAM checked to make sure this niacin isn't excessively taxing the methyl metabolism. Likewise some supplements have lots of B6 (e.g. 100mg) and between 20 and 50mg per day of B6, or less, might be better. ---------------------- Chemar, Thanks for the link, I really appreciate it. And please do ask your friend the next time you see them...maybe PM me since I don't always read the board. I really appreciate your pointing this out. Yes of course I know that you respect that we all must do what we think is best, but we all need to hear these warnings, so I am glad that you posted that! I would think that lithium toxicity would be the same, whether or not it was for bipolar. But your link did make me feel better, because they are discussing 'therapeutic doses' of 25+ mg/kg of body weight. For my son (110 pounds) that would be 1250 mg/day. My son has been getting about 1 mg/day. It wasn't to help manage behavior, just to correct a deficiency, presumable from drinking only filtered water. However, your comments still scared me so I will lay off for a month, then cut his dosage in half to the 500 mcg/day that Irena posted is 'recommended' daily allowance. I don't take any for myself and I drink the same water. But I wasn't deficient either. This reminds me of iron and copper, where so many of these kids shouldn't supplement it, but my son was low in both iron and copper and needed supplementation. This is all very very complicated, and so critical to monitor, especially for long term doses. We have cut back a lot on vitamin doses...Half of what we were doing earlier. He takes only 6 vitamin capsules a day now, plus Omega 3's and probiotics. I hope his Spectracell vitamin/antioxidant tests show him okay at these levels. We haven't done ALA or Cysteine in 18 months I think. Thanks again for your input, as always it is appreciated! Claire

Chemar and Irena, Chemar, Do you know what dosages the people were that had irreversible problems with lithium toxicity, and what the irreversible problems were? I assume that they were megadosing and using it for some bipolar therapy? I really would like more information, since I also supplement lithium. Irena, My son's lithium in his hair showed low also (multiple tests showed this), so we have been supplementing at about 5 mg (5000 mcg) a week. I see now that that is high. After supplementing, my son's recent hair test now shows lithium in the normal range. Glad it wasn't high, I would have freaked out with Chemar's comments! From a biochat posted (no link, sorry) "Hair metal test is the best way to monitor lithium. Lithium is not in water, since bottled water has all the contaminants removed (missing the beneficial nutrients now). Studies have shown there are high crime rates in areas with low lithium. .Lithium used to be in our water, but with all the purifying they do, lithium is not easily found in water these days." FYI, my son only drinks highly filtered water. I get cautious about all this...the right balance is so key. Like iron supplementation was a no-no with these kids, but my son had low iron and needed it. Same with copper...a no-no for ASD kids, but my son was low so we supplement 1 g/day. It is quite confusing...IMO, it comes back to: 1. Having a good doctor, 2. Doing your own follow-on research 3. Testing and RETESTING the levels frequently (to me 6 months is ideal for vitamin levels, though not always doable). 4. Giving the minimum supplements that are effective. Irena, If your son is having issues, then I suggest going to no vitamins for a few days then adding them in either 1 by 1 or 2 by 2 for a couple of days at a time until/unless you see a problem. As for niacin, Pfeiffer says little it needed for undermethylated kids. My son is (was?) so he only get 25 mg/day. Claire

Ortho, that is a lot of vitamins! If it is taking you that much to control it, then I would think that perhaps you are having severe absorption problems... ? I personally believe that pyroluria can be a result of oxidative stress and solving that will help the pyroluria. That's what happened with my son, and his pyroluria is gone now...without unusually high B6/zinc dosages. Anthony, Let me reemphasis Chemar's point: Please find a doctor to recommend and monitor the vitamin levels. I hate posting actual supplement amounts on the board (though I know that I have somewhere, sometime), because everyone is so different. If you got the test done through pyroluriatesting.com, I know they used to have a Pfeiffer doctor contact your doctor with recommended dosages (though Pfeiffers' dosages are also higher than I care for also). Claire

I got the Doctor's data hair test back (last round was January 06, right before we started MT promotion). First, once again I did Andy's counting rules, which showed him normal. Mercury was normal. Hmmm, so is this good, meaning we really got it out, or does it mean that MT promotion isn't causing him to excrete it? We had to redo the Spectracell antioxidant test today for the blood draw mess up. I haven't been supplementing the antioxidants he was low in, so if they by chance show normal antioxidant levels for him, then I think I can assume the mercury is probably out, because normal antioxidants would lead to excretion. Plus sometime I will redo the OAT test for low gluathione. I did hear back from the mercury urine test lab that Kim posted. They are sending me the kit. However, they spoke of oxidative damage... I will need to read more, but I got the impression that it was an indirect marker. I need to go through Kim's post and see if I can understand it better. Ok, other things from the hair test..by the way, this is our 5th test, ave 6 months between them: Toxic Elements 1. Uranium was high. This has been high (same area) on all 5 tests! Associated with chronic fatigue. DPTA gets rid of it 2. Aluminum was high. It was also high on all but the last test. Fatigue is a symptom (which he can get for sure). It says excess Aluminum can inhibit the formation of Alpha keto glutarate. His OAT test always shows him low in that, so we supplement. Maybe this is why? Anyway, the only source I can think of is his deodorant, so it is gone now. I am thinking since his issues are fatigue, and these are high, that I should focus on these, plus the blood lead. Though his hair lead was low, good. Essential and other elements: 1. Magnesium was very high. Go figure, we supplement 225 mg/day. He was low in a Spectracell blood test. I just took out the mag taurate from his supplements. It will be very interesting to see if Spectracell shows him normal again. 2. Sodium/Chromium/Manganese were somewhat high. Says high manganese can lower the glutathione pool. Ok, that is it. Good to know about the mercury, beginning to hope we have truly resolved it. However, I want to see his antioxidant and urine tests before I write this off. Claire

I do know that: 1. ASD kids have an extremely high proportion that are low in glutathione. 2. DAN protocol for chelation now includes transdermal glutathione too. Claire ps Hi Phyl, haven't seen you in a while! Congrats on your child going to college this fall...and good luck....!

Kim, Bummer re the Metametrix comments (of course Dr Shaw is behind Great Plains, but still I take it seriously. Plus I think apples to apples is the best comparison, thus Great Plains. Thanks for the post! I will see if Direct Labs will give me a credit for something else. I guess I will have him do the spit test again! No doctor available right now...at my next visit maybe our GP will do Great Plains... I am really curious about both the MT vs the hair test, AND the mercury urine test. I haven't heard back, so I will call France next (really). Claire

Pfeiffer had my 100 pound son taking equal mag/calcium. 500 mg each. But I do less. Pfeiffer says that calcium pulls lead, so I do give him some. They wanted him taking 70 mg zinc a day, and he went too high on that...out of range. They said to keep it up anyway cuz MT promotion depletes zinc. But I disagreed and cut back to 50 mg/day + 1 mg copper, and that seems to be right for him (while on MT promotion) based on the last testing. Many folks avoid copper, but I read if you supplement at least 50 mg zinc daily for 6 months, you need some copper... I agree that measuring zinc/copper levels is important if you supplement a lot of zinc. Pfeiffer says the cu/zinc serum ratio should be .7 to 1.0. I have heard that the zinc taste test is pretty good and certainly non-invasive. I should try it sometime, especially now that my son's zinc is in balance. Claire

Kim/Irena/Dan Irena, I really think the enzymes can be helpful for so many...keep us posted! Dan, glad things are going well!! Kim, Don't worry about not understanding the OAT test. When I did it, part of the fee included a consultation with one of their specialists. I called them and they walked me through what everything meant. Plus their website has nice explanations...but the big things are the yeast and the glutathione IMO. Though for us, low alphaketoglutaric acid was important, and supplementing this (along with zinc) resulted in a huge and extended growth period for my son, up to the 90% now. (low alphaketoglutaric acid and zinc can stunt growth.) So it was worth every penny. I wish our DAN doctor hadn't retired (he comes in rarely, but really it is too hard for me to manage the infrequency)...I would like the OAT test again. Maybe I will get his normal doctor to agree to it sometime...even Blue Cross sees them as a preferred provider. In the meantime, I will try the Metametrix one from directlabs soon. My personal feeling is to get the test first...you know me. There is no harm in treating yeast without testing (and the spit test is supposed to be pretty darn accurate), but I like to quantify that it really does make a difference...for future treatment. Otherwise, later I second guess myself as to what really happened. For us the yeast thing is an ongoing battle I think. And I just know it affects his blood sugar and energy. It affected mine for so long (and now I have his low glucose reading to lend further credence to my blood sugar level concerns for him). Yes, our DAN doctor said you needed to bring up the body's health to deal with die-off. How WONDERFUL to have this nurse practitioner be so supportive. I still remember your post on your conversation with an early doctor who was the opposite!! I can understand being near tears. I can't answer about the pox, but certainly that is a reasonable argument! I finally sent in my son's hair test, I am really curious as to whether Pfeiffer's MT promotion raised his mercury and lead excretion. I have also emailed that lab you posted that does the porphyrin test, wish me luck with that. I really want all the mercury gone, and then supposedly the yeast will be easier to manage. In the meantime, I have started Threelac with him again, and no signs of issues with it. I hope that putting it in capsules doesn't affect its potency. Finally, I should comment on myself. With all this vitamin regimen for the last 2.5 years (plus my ongoing exercise), and the removal of all my mercury amalgams, and specific supplementation for tested low iron levels (plus other deficiencies), I think my health is doing great. I get so many unsolicited comments on my energy level being so great, and I do think I have great energy. Of course I have only one child and he is doing relatively well which otherwise can be a big energy zapper (yes still some health issues with energy/allergies and lightheadedness, but he is happy and neurologically in great shape). I say this as someone trying to observe first hand the impact of supplementation. I am also doing MT promotion for myself, and someday will retest for mercury...but first I want the antioxidant levels retested (I did this, but they messed up the blood draw and I must redo it). Claire

Kim, I think white tongue is yeast, yes? Is that what you are implying? Very very interesting. Are you saying you see a few more blinks/shrugs since stopping the enzymes, or was that a general comment? I know the theory is that after a while they can need enzymes less, but I thought that was at least a year. Claire