Chelating Jack

[Juniper Gerrie-Sue]

So we saw our naturopathic doc today. He looked over Jack's hair elements test and wants to try the following course of treatment.

He wants me to take a first morning urine sample and then give Jack an EDTA suppository and then take urine samples over a period of six hours the next morning (I think). I'm waiting for details from him. He wants to do this to see if metals are pulled. Then the course of treatment would be a suppository once a week and we would retest his urine on occasion to check his progress.

He is saying that the suppository route is gentle and safe. I'm trying to google and research on my own. He asked me what it was about Jack that concerned me in regard to metals. I told him that Jack still does a fair amount of scripting and that when he's sick he talks out of the side of his mouth, and his alarming number of allergies both IGE and IGG. We also did a finger stick at todays appointment to check the progress of Jack's IGGs. I really believe we'll see improvement because the last test just showed overwhelming evidence of leaky gut/inflamation. Should be a more accurate read this time.

He said while chelating that I'll want to up Jack's calcium, magnesium, and zinc. I already do a fair amount of mag and zinc so looking for calcium (and iron I think he said - again, need to talk more w/him) supp will be involved.

Any opinions are welcome! I want to get really good and educated before moving forward.

[tanyalynn]

You should check out the Chelating Mamas thread. -- it's in Dental, on the first page right now.

In general--that's not a chelation schedule I'd ever use--metals get mobilized, then re-settle and that's not fun, and you do that every week. I like Cutler's low, slow approach.

I don't know a lot about EDTA, Cutler strongly advises against it, and since ALA and DMSA (orally) have a good track record, with a lot of information to use to dose properly, in a safe manner, I decided that was a good way to go with us.

In general--chelation is really a buyer beware area. It can be great--it's done really good things for me, I am very happy with my progress. And the bad stories out there can almost scare you off it for good. Lots of parental learning (or self-learning, for adults needing to take care of themselves) is important for this.

Google Andy Cutler mercury to read discussions from that perspective. Or join the autism mercury yahoo group, the New Users Welcome file has an overview of oral chelation that's pretty good.

[mamafish9]

They would have to get to my child over my dead body to chelate him like that.

OK, perhaps a bit dramatic. At best though, a single dose chelator (once oa week or even just the single test) will mobilize a TON of metals, and then, since your son clearly has issues getting rid of metals, you'll get quite a bit of what mobilized resettling in his body (which will relive the symptoms of them settling the first time, maybe worse).

I also don't see any reason to do the provocation test - you know he has metals, and the ND's approach is already decided - so what info would the test give him that he doesn't already have?

What Cutler does is very low dose chelator every 3-4 hours (and yeah, it stinks in the middle of the night). You do this for at least 2.5 days at a time, then take a break. The idea is 1) very low doses, probably 1/100 of the chelator your doc is talking about, so that only a little is mobilized at a time, and 2) frequent doses, to keep the chelator in the bloodstream for a long time, so that it can help usher metals out of the body, not just mobilize them. The worst symptoms on the Cutler protocol happen when you go off the chelator each round - there is always a lag between mobilizing metals and clearing them, so the metals mobilized by the last dose need to clear without chelator to help clear them. Even with very low dose chelator, those days aren't always fun - I can't imagine how awful it would be with a higher single dose of chelator.

What your ND is wanting to do is pretty standard in the autism world - but I don't think it's safe, especially for kids that don't clear metals well. And I think it makes the symptoms of detox WAY worse than it needs to be.

I agree with Tanya, I'd sign up for the autism-mercury yahoo group and read in their files. You can also read Cutler's book, I found that very helpful. You'll find the files section of the yahoo group has a list of suggested supps - but basically, 3-4 times a day of plenty of minerals, B vites, C & E (antioxidants) - you can chelate without all that, but it makes the symptoms worse.

As for calcium, your multi has plenty, IMO, especially for a child dealing with antimony & arsenic, which will challenge their bodies to use mag well (calcium supps just make that more difficult).

ETA: Sorry, clearly I'm feeling rather opinionated today :P... I've been on another forum dealing with fallout for an autistic child who has some awful side effects from another doc's "very safe" chelation protocol. Basically, the child's liver couldn't handle the large dose of mobilized metals, and lots of mercury got pushed around to the child's brain. HUGE regression. It's a big mess. But I do believe chelation can be done with manageable risks - I just think parents and docs should err on the side of extreme caution.

[Juniper Gerrie-Sue]

Thanks Ladies! I'm reading reading reading....there are just so many opinions, it's hard to wade though them. But your opinions mean a lot to me and make a lot of sense.

The reason our ND wants to start with the before/after urine is because he doesn't believe in hair tests. I don't agree, I think the hair test might not be perfectly accurate but I do see it as a sure sign that there are issues.

*sigh*

I'm slightly frustrated. I kind of sense this type of confusion was coming for me. Will keep reading. TY!!

Also - just to ease my thought process, how do you dose your child in the night with the dmsa? Jack freaks at the sight of a syringe....I was thinking the dmsa came in drops and could be dropped into his mouth while he slept but it sounds like they're capsules that I'll have to mix with juice?

[mamafish9]

I used zeolite, not DMSA - and that's just a tasteless drop of water that I squirt into his mouth with a little syringe. There are lots of ideas for getting the dmsa into kids at night though - and Jack is so small you'd only be trying a very little bit.

Zeolite does not work for everyone, but we did a pee test before we started, and then after we started, and saw very strong evidence it was pulling metals for us (he was excreting antimony at 10x the rate he was before we tried zeolite).

Zeolite folks say use it 3 times a day, but we got really bad symptoms doing it that way, so I used the Cutler approach and did it every 4 hours, which worked very well.

Your ND doesn't trust hair tests - any good reason for that? Does he question whether Jack is metals toxic? It seems silly to run risky tests to learn something you already have pretty good confirmation of. No test will give you exact answers, but I think you have decent evidence that your child has metals toxicities.

Deciding to chelate my child (and HOW to chelate my child) was a really tough decision, but it was a really important step for us to take. And I feel a lot better knowing he has a lot less toxicity now, and that we know this is an issue and will monitor with a new hair test every 6-9 months or so.

Good luck - I know it is a huge learning curve...

[tanyalynn]

Originally Posted by mamafish9

Deciding to chelate my child (and HOW to chelate my child) was a really tough decision, but it was a really important step for us to take. And I feel a lot better knowing he has a lot less toxicity now, and that we know this is an issue and will monitor with a new hair test every 6-9 months or so.

Good luck - I know it is a huge learning curve...

I just wanted to emphasize that part, in case my online demeanor ever makes it seem like it was a straightforward, simple process. Things are a lot easier now, but those few months when I was deciding what to do with the kids were agonizing, probably the toughest time through all of this.

You should read enough, and understand enough to feel informed about whatever you choose. frequent dose chelation is a yahoo group for adults, most amalgam poisoned adults who are getting better. They can talk about what's not worked, just search the old posts.

If you decide to go a different route than what you ND wants, feel comfortable saying, "I've appreciated a lot of the advice you've given me, and I value our relationship. I feel I have enough information to go forward, and after long consideration and a lot of reading, I feel most comfortable with X." It seems oftentimes, some going on your own and some working with a HCP is a god combo for people.

In terms of DMSA--it's a powder, frankly it tastes pretty bad. But I hide it in between two layers of applesauce, and if I'm careful, the kids never taste it. Add some cinnamon if you can to add a nice aroma, just in case any DMSA tries to escape. You can do some test runs, waking up your son and getting him to open his mouth. It was stressful at first, but mine got into a routine pretty quickly, and they don't actually remember that I gave them applesauce several times at night.

You wouldn't want to mix DMSA in juice, or ALA either. They taste bad. Most people choose a fairly viscous fluid, applesauce is common, sometimes, if you're careful and quick, a thick chocolate sauce could work (though it'd be messier for spills), you just want something that'll stay on a spoon.

FWIW, I've not had a hair test for myself, DD is the only one of the three of us. The combo of DMSA and ALA will get a lot of metals out, and at least to me, it's pretty clear when metals are being mobilized. And after a while, the same dosage doesn't seem to do as much, and you can go higher in dosage. So to some extent, for the approach I'm taking with the kids, I don't need to know exactly what metals we're dealing with. I know my health issues started when my amalgams were placed, and DD's hair test showed mercury toxicity, not a shocker, and elevated arsenic, again not a shocker, so I figure we need ALA and will keep using it til it doesn't mobilize noticeable amounts of metals anymore.

[Juniper Gerrie-Sue]

He just said that he's talked with a lot of other NDs and that they all feel that hair tests are too innacurate. I think he is probably doubting that Jack has metals issues because Jack is doing so well. I think Jack is doing well despite the metals, and will continue to progress but I'm scared to NOT address the metals issue. That said, I am with you and want to err on the side of extreme caution. This is my baby we're talking about and I am one dead serious protective mama bear.

I'm going to see if our ND will agree to doing the before/after urine test but instead of the suppository using a low low dose dmsa (or zeolite?? tell me why you chose that please! )

I'd like to have his guidance but only if it's safe safe safe! Still reading....as much as I can while my little one sleeps and Jack watches Spongebob.

[tanyalynn]

IMO, and this is based on my experience, and my experience chelating my kids--they don't need to be nonverbal or developmentally delayed or obvious to the world in their issues. When I give my kids doses of DMSA, or especially ALA, it is clear that plenty of metals are moving, but both walked and talked in the typical timeframe, DD is 6 and making good progress learning to read, DS looks normal to most people, it's not many who'd recognize his spinning for what it is.

I fear, based on my experience, that there are a LOT of kids out there who have issues that make life difficult for themselves and their parents, but who do not have enough going for a diagnosis, and thus don't consider a relatively serious problem like heavy metals. They sleep badly, or they're irritable and too tantrum-y, or anxious, or they have odd rashes and odd behaviors. And so parenting them is a lot more difficult, and it's a lot tougher path for the kids to hoe growing up. And health problems crop up more easily as adults, earlier than in most people.

I think most HCPs would've missed what's going on with us. I was blessed, truly blessed, to find the one I did. She figured out why I was fatigued and brain-fogged and anxious and depressed. All things I want my kids to avoid.

Ok, off my soapbox now. Yeah, I'm passionate on the topic.

[tanyalynn]

Okay, back on my soapbox, I just can't stop myself.

I think this is why adults are so often missed. People look at someone with multiple chemical sensitivity or fibromyalgia and KNOW things are wrong with them, but a person like me? Fatigue, some depression, some anxiety--but not debilitating--some brain fog, allergies, overall I just felt bad. But based on how my body reacted after I got my amalgams out, and when I take DMSA and ALA, well, I'm not normal. There are multivits out there (that I recommend to no one) who include ALA, to take every day. I'd get nasty mood issues, all sorts of weird stuff, if I did that. But these products stay on the market, so apparently they don't make everyone sick. Adults can really hide how toxic they are--I guess kids can too, given my experience with my kids, but the discussion of safety and adults is too often lacking, it's really not adequate. Adults can be disabled by bad chelation. Just because they don't do stuff like spin and start mouthing things, doesn't mean that the effects (mood issues, fatigue, digestive issues, new allergies) are less important.

Okay, now REALLY off my soapbox.

[Juniper Gerrie-Sue]

I agree. There are so many kids out there on prescription meds for behavioral issues and I'm so convinced it all relates back to food and the environment. I just want my children to have their health, it's my responsibility and my passion. Children now are more toxic because these metals etc are being passed on....it's accumulative. I'd like to test myself and chelate but need to have amalgams removed and need to do so when I'm no longer breastfeeding.

Please stay on your soap box! I'm with you! I'm now reading about zeolite and wondering why it isn't preferred....it seems so much safer!

[Juniper Gerrie-Sue]

Okay, so I'm reading reading and start to stumble upon sequential homeopathy. It is natural detoxing as opposed to chemical detoxing and if it works (which I have experienced homeopathy working for myself) than this would be a no brainer.

http://www.homeopathyhouston.com/hom...hilosophy.html

I know this is shifting gears a bit but was wondering if any of you have tried it or heard of success with it. I can't stop reading!!! Why haven't I heard of this as an alternative to chelation before in all my years of "research"?

[mamafish9]

Originally Posted by Juniper Gerrie-Sue

He just said that he's talked with a lot of other NDs and that they all feel that hair tests are too innacurate. I think he is probably doubting that Jack has metals issues because Jack is doing so well. I think Jack is doing well despite the metals, and will continue to progress but I'm scared to NOT address the metals issue. That said, I am with you and want to err on the side of extreme caution. This is my baby we're talking about and I am one dead serious protective mama bear.

I think there are two levels of metals issues. First, with active exposures and poor detox, you have actively circulating metals, which cause lots of behavior and health issues. Then, once you've either decreased exposure or started supplementing enough to clear the actively circulating metals, behavior and health improve. But there are still lots of metals stored away in organs and bones. In kids, the brain stores a lot of those metals. That was the single fact that chased me to chelate. My son has pretty low metals now, and he's still autistic. But dang, he doesn't have a body and brain full of metals, and I think that will make big differences over the long term.

I tried zeolite because the dmsa bad taste scared me (at that point, DS didn't swallow capsules, and he's salicylates sensitive, so fruit doesn't work to hide it in either). Zeolite was easy, and for us it worked, so that is what I stuck with. Also, the zeolite captures and clears metals, but it doesn't get metabolized (broken down by the body), so I think it's easier on the liver than a drug like dmsa. But I wouldn't hesitate now to use dmsa in very low doses.

In my mind, the easiest way to see metals is to try very low dose chelation, Cutler style, for one 3 day round. If you see behavior changes, you can be pretty darned sure you've got metals on the move. (Cutler says to chelate until things are no different on and off the chelator). One round of the low dose approach won't hurt if he doesn't have metals, and it will give you confirmation if you need it.

On homeopathy... I use homeopathy for some things, and I think it could be good to support the body's natural detox. But I had a kid that had acute metals issues, and an already built up load - I didn't trust his body's natural detox to handle that load well. I wanted something physically helping to escort metals out of his body. But that's just my two cents, from someone who doesn't rely heavily on homeopathy.

[tanyalynn]

Originally Posted by Juniper Gerrie-Sue

Okay, so I'm reading reading and start to stumble upon sequential homeopathy. It is natural detoxing as opposed to chemical detoxing and if it works (which I have experienced homeopathy working for myself) than this would be a no brainer.

http://www.homeopathyhouston.com/hom...hilosophy.html

I know this is shifting gears a bit but was wondering if any of you have tried it or heard of success with it. I can't stop reading!!! Why haven't I heard of this as an alternative to chelation before in all my years of "research"?

Panserbjorne is having success with this, BUT she had to go to a lot of homeopathic doctors to find ones who knew how to do it right. Sounds like there are lots of ways that are ineffective. If I knew how to find a doc who I was really sure knew how to do this, so that it really worked, I'd would seriously consider switching methods. But I don't have that confidence now, and I need something that I know will work. Frequent, low dose chelation with ALA and DMSA work.

I think you also generally have to do really good with diet, or maybe you can combine the typical supps that people using dmsa/ala use (I mean vit/min supps) with homeopathic remedies. Search for Panserbjorne's discussion of this, some in Dental, maybe other places. She's dedicated to making it work and it sounds like it can, but I've got a HCP who's good at a method that makes sense to me, I can learn from others' experiences, it's drugs (pharmaceutical drugs, yes, so obviously not ideal) that are well-understood, old drugs.

[tanyalynn]

Originally Posted by Juniper Gerrie-Sue

I'm now reading about zeolite and wondering why it isn't preferred....it seems so much safer!

Why did I choose ALA, and then add in DMSA, instead of zeolite?

The Cutler approach makes sense to me. Mamafish explained it above, keep steady levels of chelator in the blood to minimize metals re-settling--which hurts and is hard on the body. I don't know the half-life of zeolite. Mamafish has found a dosing schedule that works for her son, but I'd really rather stick with something that's more solidly known. And I don't know why zeolite seems to work for some people and not others--again, I want something more tried-and-true.

ALA fit the bill for me for that, and at first I didn't want to give DMSA to the kids, though I was willing to take it myself. Based on my reading, the biggest risks of DMSA and ALA are due to the metals moving and re-settling. But if I use them at appropriate dosages, and appropriate dosing intervals, I can minimize that risk a lot. DMSA also has a rare, but occasional, bad effect in some people. It can depress white blood cells (?)--some part of the immune system, and infections can set in easier. The solution is to stop taking DMSA, and don't take it again--it seems to be an effect that just happens to some people--it's repeatable, I mean. Low doses of DMSA (some docs prescribe doses that are WAY the heck too high) seem to bring on the problem slowly enough that it's clear what's happening--so you don't end up in the hospital. That's a serious thing, clearly, and everyone who uses DMSA should know about the potential for that.

But on the other hand, DMSA is an old drug. It's Chemet, that's the brand name for it, and it's the FDA licensed chelator for acute lead poisoning. It's well known and well described in chelating heavy metals. The dosage Cutler recommends are a lot lower than anyone else is recommending, and it's still effective and the side effects are less--make sure when you're reading pros and cons, you take into account dosage and dosing schedule. Those are critical in understanding outcomes.

ALA gets mercury out of peoples' brains. I feel that one's non-negotiable for me and the kids. Strangely enough, it's mostly considered an anti-oxidant and companies throw it into multivits like it's candy. (alpha lipoic acid, not alpha linolenic acid which is an omega-3 precursor like in flax seeds). It's strong, it can pack quite a punch, but again, with careful dosing--and I feel there's a good body of data to use to inform my choices there--it's effective.

So, that's how I got here, in brief.

[mamafish9]

We tried zeolite, but expecting it not to work, honestly. Part of our problem was that DS' highest metal toxicity was antimony, and dmsa/ala don't really work for antimony (at least Cutler says this). And we didn't have mercury issues. But pee tests showed zeolite was doing a lovely job of chelating antimony - for my son. I've heard estimates that it works about 25% of the time (and no idea why it doesn't work for others).

Zeolite is different from dmsa in that it isn't processed/broken down in the body, so it doesn't really have a "half life". It takes about 7 hours to clear the bloodstream, according to limited data. For my son, every 4 hours fit - if I went longer than that, I saw detox symptoms goes up.

I will say though, that while zeolite has worked really well for us, I think their marketing is awful, and very misleading. It's NOT *totally safe*. NO substance that mobilizes metals can be. The zeolite itself might be safe, but mobilizing metals always carries risks. Which means, contrary to their advertising, that I would never, ever, ever recommend it for pregnant moms, breastfeeding moms, or anyone with mercury still in their mouth. So I treat it with the respect I would treat any chelator.

[Juniper Gerrie-Sue]

Thank you both so much. Your insight is so valuable! I think we're going to explore our options for a bit. Want to go safe and slow on treatment and decision making!!! I will definitely post when we decide what to do and how it's going.