NancyE

Hi Carolyn, I agree that you should avoid the chemicals if at all possible. My suggestion is to pour boiling water on the area. I was getting a lot of ant hills around my house and didn't want to end up with them inside my house again, and didn't want to spray chemicals, so someone suggested pouring boiling water on them. It seemed to work, but of course it killed the grass too. I had to replant patches, but it seemed better than the alternative. I also read that spraying vinegar on weeds will kill them, but I don't know how it would work on an area of grass.

efgh, Pfeiffer didn't actually suggest enterococcus as a probiotic. E. coli (I assume it's the same thing) was just listed as one of the beneficial flora tested for in the stool test from Doctor's Data. They did suggest we switch to Kirkman's Pro-Bio Gold probiotic, which has a number of strains in it. Chemar, thanks again for the info. I'll look for the Bilberry capsules.

Chemar, Thanks for the info! I will look for the NOW brand of SAMe. The doctor did say to use SAMe and TMG. Do you know of a specific reason not to? I thought it seemed like overkill, then I looked at an article that describes how methionine works with methylation, and it sort of made sense to use both. SAMe travels through the body delivering a methyl group that allows metabolic reactions to work properly. After SAMe delivers the methyl group, it becomes homocysteine. Homocysteine is then ready to accept another methyl group which transforms it back into methionine. However, if there are not enough methyl groups to add to homocysteine, then the homocysteine builds up in the body, which is bad. TMG is one pathway that can deliver a methyl group to homocysteine. It sounds to me like a person might need to supplement with both to handle the different stages of methylation. Does that make any sense? Also, I do give my son about 500 mg of Inositol in the morning. They did say I could give him it 2 or 3 times a day, so I may add it at night and see if that helps. He currently gets vitamins A, C, & E among his other vitamins. Those are antioxidants, right? Thanks again for your help! Kim, I think it depends on what type of insurance you have as to whether it will cover Pfeiffer. I have an HMO, so it won't pay anything. However, if you have a regular plan that pays something for doctors that aren't on the "preferred" list, they may pay 70% once you have met a deductible. Check with your plan. Pfeiffer will give you a detailed receipt to submit to insurance (although they require payment up front).

We finally had a stool test done for my son and I discussed the results with the doctor at Pfeiffer at our follow-up appt. last week. It showed that his good bacteria was relatively good, but he had a high amount of Staph aureus, which needs to be treated. No yeast grew in the culture, but they saw a lot of yeast cells under the microscope, so that needs to be treated. He also had a small amount of blastocystis hominis (a parasite). So, they want to first treat with metronidazole benzoate to kill the parasites, then with Uva Ursi (an antibacterial/antifungal herb) to kill the staph aureus and help with the yeast. We decided to wait until spring break to start the treatments in case he has adverse die-off reactions. Does anyone have experience with these treatments? He's doing ok on the rest of his vitamins, but I still haven't seen a big turnaround. Anxiety and OCDish behavior remain our biggest problems, plus tics have returned pretty strong at times. The doctor said to try SAMe and TMG, but to be sure to use a good brand. She mentioned TwinLab for SAMe, but they don't seem to make it. Chemar, I know you've used SAMe in the past. Can you recommend a good brand for this and/or TMG? I have found that Source Naturals, Natrol, and NSI make SAMe in 200 mg. Are any of them good? They all seem to have lots of other ingredients in them. We are also switching to Kirkman's Pro-Bio Gold probiotics and Nordic Naturals Pro-DHA capsules, per Pfeiffer's recommendations. The doctor also said we could try the Houston AFP peptizyde enzyme while we try to switch to a gluten free diet again. That'll be the hardest thing to do, and while I'm not sure it's completely necessary, I want to at least test it to see if going back to gluten is indeed why his tics came back. I'm a little overwhelmed by the changes and additions, but am hopeful that the SAMe/TMG may help his moods. I appreciate any feedback from Chemar, and others who may have used these products. Thanks!

Hi EFGH, We haven't used a probiotic with this in it, but I had to respond because just today we were back at Pfeiffer and we went over my son's stool test results with the doctor. One of the good bacteria they look for is e. coli (the good strains, not the bad ones we hear about on tv). So apparently it is beneficial. I'll post more about our recent results and his ups and downs when I have more time.

Thanks for all your replies. First, he is not taking manganese and was negative for pyroluria. I spoke with the P.A. at Pfeiffer the other day, who was very nice. He was almost out of his original compounded prescription so she recommended taking things individually for awhile, as it is easier to adjust and separate things if necessary. We decided to lower the B6 a little and increase the P5P a little, change the fish oil brand, and change the inositol brand (I had actually run out of inositol sometime in the last month, so I don't know if that has played any role in anything). We are also doing a stool test for yeast/parasites (we haven't done this yet), and possibly a follow-up urine test depending on the 1st results. I will schedule his follow-up visit for February and see one of the doctors she recommended to ask about some of the other tests. His copper was high and the ratios were out of whack, and his aluminum was very high in the original tests, but the P.A. told me they don't really consider the aluminum results all that accurate in that test, so who knows? I keep reading that detox reactions should last a couple of weeks, but can they last longer? The horrible rages are pretty much gone, but the anxiety is there, and I cannot figure out why he's ticcing again. By anxiety, I mean irrational fears, overreacting to possible bad scenarios, convincing himself that something bad will happen. A lot of it seems OCDish, and I just read Tamra Chansky's book, which was very helpful, and we're trying to use her techniques. We had really cut out gluten to see if it improved his mood, and I honestly don't see any connection there. However, I realized his new ticcing started up when he first started gluten again. Of course, there have been days when he didn't tic since starting gluten again, and many virtually tic-free months while eating gluten before the experiment. Would it really make him start ticcing again when he was usually ok before we removed it? He's had tics come and go with no explanation before, so I'm hesitant to connect it to this too readily. As far as screens, he rarely watches tv, computer is very limited. When he was at his worst when initially ticcing I always noticed he'd tic more when watching tv. However, there have been long periods when he's been doing better when screens really didn't affect him. Even times when he's been exposed to playstation or computer a lot at his cousin's house and I EXPECTED him to be affected and he wasn't. Again, we just don't get a lot of the clear cut connections that a lot of people do, unfortunately. HOWEVER, he's doing ok overall, we'll keep plugging along, and hope that the follow-up tests give us some indication of whether we're on the right track. Thanks again to everyone.

Hi Jennifer, Well, I can't go into a lot of detail right now, but things have been very up and down. I think I mentioned before that we had an intial huge increase of rage-type moods when we started the full Pfeiffer regimen. We've cut out certain vitamins for short periods of time to experiment, and have seen the naprapath to try to help sort out what's going on. Things did get better with the moods, but anxiety is still a big issue, bigger than before, I think. Our naprapath muscle tested him and said he's "mobilizing metals" now, but needed help actually getting rid of them, so gave us sodium alginate, which is supposed to work like chlorella. He muscled tested that the sodium alginate would work better than chlorella for him. Honestly, we didn't see any big changes when he was off gluten for several months, and we finally started it again. To complicate things, he was sick with a stomach virus last week, so I had to stop all vitamins for a few days. He seemed to do ok, and was actually dry at night during that time, which makes me believe again that the vitamins may have something to do with him being wet at night. A new shoulder tic has cropped up in the last month, some days it's very constant, some days it's not there at all. I keep trying to connect his behavior and tics to something concrete, but it's never consistent. I just don't feel like we have hit the right combination of everything yet to see clear cut results. Maybe it's just going to take longer with the vitamins, but we have had to interrupt the program several times, so I don't know if that makes a big difference. I'm more worried about the anxiety than anything else. I'm going to talk with the nurse at Pfeiffer again and tell her what's going on. I think it's too early to retest him, but I don't know if his current program is really helping. One thing the naprapath did was have him drink something that's supposed to indicate how high his zinc levels are. I've heard of it before, but we'd never done it before. Anyway, it didn't have a strong taste, which indicates his zinc level is still low, after several months of 50 mg of zinc a day. She muscle tested him and switched the type of zinc he's taking, so we'll see if that helps. I'm feeling a little discouraged, and worried about the anxiety, but I still feel we'll eventually get there, even if we have to go somewhere else for answers. I'm also seriously considering finding a therapist to help him learn coping skills to deal with the anxiety. it's just not an easy fix for us. I don't mean to sound like he's not able to function - he's leading a relatively normal life - doing great in school, etc., but these underlying issues just make things more difficult, sometimes really difficult, and I know he needs help now before he gets any older. Well, I guess I did go into detail! I hope things are going well for your son. If anyone has suggestions for what helped them most with anxiety, I'd love to hear them. Thanks.

Jennifer, We didn't get the primer, as the vitamins I was already giving him seemed close enough. We went back in July, and my son has been taking his prescribed plan for about a month and one week now. No great change yet. I posted on my Pfeiffer results thread that moods/rages got worse, and we cut back for a few weeks. We're back to full force now. I'm hoping that in another month we see some real improvement. We just started gluten-free a week ago, although they suggested that from the beginning. I would expect to wait 6 weeks from your appointment before you get the actual results.

Claire, I tried to look at the Spectracell site, but it's under construction. You said you don't need a doctor's signature, but it's a blood test, right? So I'd have to get a doctor to agree to draw blood? I'm sure our regular doc wouldn't do it, so I thought of asking Pfeiffer if they'd add it to the list next time we go back. Did your DAN doctor do it?

I do agree that what you eat, and the supplements you take while pregnant can play a big role in your child's health. Luckily, you're so aware of factors you probably never considered before. I often feel guilty for eating so many tuna fish sandwiches at work while I was pregnant with my oldest - too much mercury? Oh well, I've almost stopped worrying!

Claire, When we were at Pfeiffer I told the nurse we had already tried to eliminate artificial ingredients, dyes, etc. She said that was good. My sister did say that they told her that red, yellow and orange dyes were bad because they latch onto zinc and it gets excreted, causing a person to become deficient. I'm not sure if I realized that's why they are bad. Has anyone else heard that?

Congratulations Susanna! I breastfed both boys - my oldest (with the tics) actually breastfed exclusively a little longer. He was also the one with the allergies. Go figure. I do agree that if possible, breastfeeding is best.

Hi Claire, I knew nothing about enzymes when I talked with Pfeiffer, so we didn't discuss it. My son is taking 200 mg B6 and 25 mg P5P, plus a B complex with 50 mg of everything. Seems like a high amount to take forever, so I did plan on asking the nurse about it. He does seem to be remembering dreams much better - isn't that a sign that he's absorbing more B6? He used to say he never had dreams. (We actually had similar dreams the other night - kind of weird!) Anyway, 2 days gluten-free and counting. Luckily, I just looked through the 10 pieces of candy he kept from halloween and realized he couldn't have the Twix and another candy bar that had wheat ingredients. He's happily exchanging them for other treats. They were both very happy to get baseball cards in exchange for all the other candy. Nancy

Hi everyone, Just wanted to add a note about our most recent experiences in our quest for better health! First of all, thanks to everyone for all the FASCINATING info about the enzymes, methyl production, etc. It's really beginning to make sense to me (if I read it over and over!). We are following the Pfeiffer treatment plan for my son - no big improvements yet - in fact, the moods/rages seemed to get more frequent and intense. I'm not entirely surprised, as I know it can get worse before better, but it's made for some very difficult days. I decided to go back to our naprapath to use NMT to see if we're on the right track. I was also very curious about gluten being a problem. (I've posted before about NMT - if you're not familiar with it you can check the website - neuromodulationtechnique.com - I've become a pretty firm believer in it by now.). She muscle-tested my son and asked his body if the Pfeiffer treatment will help with his problems. It said yes. I wanted to know how long before we see some results so she asked and it said in 2-3 months. She asked if gluten was acting as a toxin in his body - it said yes. Interestingly, she has asked before if he was allergic to gluten and his body said no. She explained the differences between allergy, sensitivity and toxic reactions - it's important you're asking the right question to get the right answer. She asked if we could use NMT to help speed up the process and it said yes. So she went through some pathways and treated his body to help clear the toxins. She also said, now I"m trying to remember correctly, I believe his glutamate receptors were too sensitive, so she lowered that. I THINK it was the receptors that gluten acts on. She also said even if we can get his body to react properly to gluten it's still important to first give it a break to let the gut heal. She said we should really go for 2 months without gluten, which is also what Pfeiffer had said. His body did say he wouldn't have to do it forever. We've gotten closer to gluten-free, but I will now make a determined effort to stick to it completely for 2 months. We discussed it with my son and he seems to understand why, and he's agreed to do it. I actually found a whole store that sells gluten-free products near my home, and I think he'll eat the Gluten-Free pantry sandwich bread I made. I also thought the Kinnickinnick (sp?) bread was good, but he wasn't as keen on it. She also asked if yeast was a problem and his body said no. It did say aluminum and copper were a problem, which fits with his tests, and she asked his body to help clear those as well. I guess this may sound kind of strange to some people, but I've really come to believe in the power of the body to heal itself, and NMT seems to work. I hope we have some good results to share soon. Claire - sorry you weren't thrilled with your Pfeiffer visit. I'm not thrilled with all aspects of them either, but we did have a great nurse at our initial visit. It think we actually saw a P.A., not a doctor, but we did have more time with her. I did call once with a question and spoke to a different nurse who wasn't as personable, so maybe it depends on who you get. I hope you get some helpful information.

Jennifer, That's really interesting about the gluten. What kind of test did you do for that? How long was the withdrawal period, and how soon did you see a change? Sorry for all the questions, I'm just so curious about this connection, and I don't know how long I can keep us gluten-free to test it. Thanks. Nancy

Claire, That's a tough one. My guys are younger than your son, so they haven't really rebelled at the food restrictions that much yet. What we do at Halloween is let them trick or treat all they want, then they pick out maybe 10 pieces of candy they really want - I get rid of all the really bad colored and pure sugar stuff right away - so it's mostly chocolate bars they keep. They can have one a day. Still not great, but better than all the food coloring, and I feel I have to let them have something once in a while. Then I pay them a nickel or dime for each piece of candy they have to give up, which they really seem to like. It's not more than a few dollars each usually, and they feel like they're getting something. Honestly, they seem to forget about the candy within a day or two anyway. It sounds like your guy has more definite and immediate reactions to candy than mine do, so it is very hard. Would he like trading some for money or other things that interest him, as a way to soften the blow? I know it's very hard to live through the after-effects for awhile, but I don't know how to totally avoid it when they have such strong feelings about it. On the one hand, you want to protect him from the bad effects you know it has on him, and on the other hand you don't want to start alienating him. Teenage years are hard - I'm not in any hurry to experience them! I did just read something that reminded me that moodiness and outbursts are normal for all teens. Unfortunately, just something we're going to have to struggle through. Hmm, I think I was a pretty moody teen at times too. Anyway, I think your ideas for substituting "healthier" candy as much as possible is a good one, and I'm sorry I don't have any better ideas for you. I guess if you can reach some compromise where he's still feeling he's getting something he wants (maybe even more than candy) might help you both feel better about it. Good luck. Nancy

Hi all, I wanted to mention a few other things I thought of. First of all, thanks for the gluten-free pantry reference, Claire. I haven't seen it at Whole Foods, but I may order it from the web site. I tried Bob's Red Mill mix, which I liked but they didn't. ALso, in one of these threads there was some discussion of the basophil count test v. the histamine test, and the hair test for mercury and other metals. Pfeiffer did do the basophil count test AND the histamine test. His basophil count was not high, but his histamine was very high. As far as the hair tests, they were a little confusing to me at first. The only metal he was high in was aluminum. This meant he was excreting a lot of it. The nurse explained that even though mercury, for example, was low in the hair, that might mean that his body is holding onto it and NOT excreting it properly. She said that in 4-6 months at his follow-up appointment when they run the tests again, it may show more metals being excreted, which means that his body is is working better at getting rid of it. So the first tests may not actually show a problem. However, certain essential elements, such as calcium and magnesium, were high in the hair. This may mean that he's not absorbing them properly, and too much is being excreted. I understand the theory behind it, but it seems like quite a balancing act. I'm curious to see if there are any big changes when he's tested again. I am definitely going to try gluten-free for at least a week or two, but I've heard it can take several months to really see a difference. I think I asked the nurse about the enterolab test and she had never heard of it - basically said that I'd have to decide if it was worthwhile to me. They seem to think there's no really accurate test out there, except going gluten-free for several months. Claire, did your son show a sensitivity to gluten from the test? Yes, I understand how hard those emotional outbursts can be, Jennifer. We had another doozy this morning. I'm trying even harder to stay totally calm and remember it's not really me he's mad at. He's even admitted that in his calm moments. I had a conversation with a friend whose son doesn't have the issues my son has, but still has some good meltdowns, as all kids do at times. We compared what bad mothers we are, according to our sons. She had just heard what a bad mom she was because she told her son to blow his very stuffy nose! I had a good laugh over that, especially because I've heard it myself! Nancy

Jennifer, I'm sorry it's taken me so long to get back to this. Really busy these days! As I posted briefly before, the results from my son's tests showed two main problems: zinc deficiency and elevated histamine, which translates to undermethylation. Serotonin, dopamine and other transmitters require methyl groups in their formation, so undermethylated people generally are low in these. Zinc is important for many functions, including inducing metallothionein, a metal metabolism enzyme, which is also a key antioxidant. His zinc was moderately low, but his histamine was twice what they consider acceptable. Many problems associated with these problems fit our situation: anger episodes, OCD tendencies, perfectionism, competitiveness. His copper level wasn't high, but it doesn't seem to be regulated correctly. The ratio of free unbound copper is too high. I think that means too much is circulating in his body. It appears that he may have a problem with metal metabolism. The treatment is supposed to raise methyl formation and induce metallothionein. The prescription includes: Vitamin C Pyridoxine (Vitamin B6) Pyridoxal-5-Phosphate (precursor to B6) Methyl B12 Sublingual (a methyl donor) Cal/Mag B-complex Vitamin A Zinc Vitamin E They said I can continue the fish oil and inositol he takes. I asked the nurse why they don't just give him methionine for his undermethylation, which is mentioned in their info packet. She said they've had really good luck with the Methyl B12 sublingual, which is supposed to help convert homocysteine to methionine. Now, I just read Claire's post about B12 and folic acid being bad for undermethylated people. I don't know how to reconcile that. I did ask about folic acid, because it's in every B-complex I've seen, and I read that folic acid isn't good for undermethylated people. The nurse didn't seem to think it was a problem, at least not the 400mcg that comes in the B-complex he's taking. I don't know, it still makes me wonder. He's been taking the whole program for a little over a week. One big change is that a number of little tics came back, which I haven't seen in quite a while. I wouldn't call them severe by any means, but the change is very obvious to me, seeing as how they were basically gone. I know you can get worse before you get better, so I talked to the nurse and she said he may be detoxing too fast, which isn't uncommon. She suggested halfing the dose for a few weeks and then building back up. The tics may be a little better in the last few days, hard to say. No big change in mood yet, still having some extreme reactions. I don't really expect an overnight improvement - I know it can take months. But I'm hopeful. The big question for me is, why is he deficient in vitamins and minerals needed for proper functioning? I wondered about gluten problems and absorption problems. They did suggest a gluten/casein-free diet for several months as the best way to see if there is a connection. I've heard from others here about what a difference it made in mood problems, and I wonder if that's because once the gut heals, the body absorbs all it needs from normal amounts of vitamins. I have to say, we have not been able to make the leap to totally gluten-free yet. We've been pretty much dairy-free for years, but BREAD is a big problem. I've been slipping in substitutes for other things, but I have not been able to find a bread they will eat peanut butter and jelly on! Everything I've bought pre-made has been horrible. I tried a mix in the bread machine that I thought was pretty good, but they didn't like it. I made a type of french bread from scratch that wasn't bad, but it was a lot of work and not really the right size for sandwiches. Has anyone actually found a good gluten-free bread? I'd like to give this a good try. Thanks for any ideas. Nancy

Claire, Since I haven't discussed the results with the nurse yet, I'm not entirely sure what everything means. However, just from reading it, it looks to me like his mercury was not high (this was hair analysis), but his copper was. From what I understand, the high copper/low zinc go hand in hand. He also looks to be high in aluminum. Again, they tested for lots of other things, which I will discuss with the nurse on Monday. The suggested treatment includes Vitamins C, A, and E, calcium/magnesium, B6 (pyridoxine), Pyridoxal-5-Phosphate, Methyl B12 sublingual, zinc, B complex. I'm not very familiar with the P5P and methyl B12, so I need to ask about that. I haven't looked it up yet. The literature from them indicates that methionine (a methyl donor) is used to treat undermethylation, but I don't see that prescribed for my son. I assume the B12 is serving as a methyl donor, so I don't know if either can be used or if it's a two-step process. That's one of my big questions. I can go into better detail after I talk to the nurse. I'll keep you posted.

Another Mom, I wasn't really offended, I was just concerned that you might be dismissing issues that many posters here feel are very real and important in their lives. Thanks for clarifying your concerns - I'm sure you have everyone's best interests in mind. You made some good points that we need to be careful when evaluating our children and ourselves, as everyone is so unique. Certainly, one diagnosis doesn't fit everyone. Claire, I am registered under NancyE if you'd like to email me. Thanks. Nancy