Chelation?

So, as I mentioned, my 6 year old has been diagnosed with heavy metals. In particular, he had a very high amount of lead in his urine on a “provoked urine test”. As a result, I find myself in a similar realm of uncertainty as I did when the Lyme diagnosis arrived — except that I know less about lead and chelation than I do about lyme (now). As with Lyme, there is uncertainty in the testing and the treatment. Here is what I’ve been able to find out so far:

Testing

The classical test for heavy metals (at least lead) is a blood test. According to the CDC, “no threshold has been determined regarding lead’s harmful effects on children’s learning and behavior”, however, the national goal for lead blood levels has dropped from below 25 micrograms/dL in 1990 to below 10 micrograms/dL in 2010 for children < 6 years old. There is evidence that lower concentrations can affect children. For example, a study published in the New England Journal of Medicine followed 172 children for 54 months [1]. The results show a reduction of 1/2 IQ point for each additional microgram of lead in the blood (based on an estimate of average exposure over the entire study, and after adjusting for maternal IQ, race, education, tobacco exposure during pregnancy, income, sex, birth weight, iron status, and so on).  The greatest impact was below 10 micrograms/dL. My son has only had three blood tests of this sort. The highest was 6, the lowest 3 (I think). This suggests that he may have built up significant levels of lead in his body over time, since he’s had ongoing low level (and medium level) exposure over the years.

Other options for testing include hair tests, urine tests (lead is excreted through the kidneys and urine), and “provoked urine tests” (in which a chelating agent is used to move lead out of the tissues and into the urine that is tested). There seems to be evidence that the urine test (unprovoked) is a reasonable measure of lead exposure. There are established baselines for urine lead levels (<5 is the reference range). There does not seem to be an established “norm” for provoked urine tests, so they are compared to the unprovoked baseline. My son had a 44, which seems very high even given the fact that the provoking agent is expected to cause an elevation in urine lead levels.

Given all of this, I feel confident that my son has a high total body burden of lead, though I cannot say exactly how or whether this is affecting him. In general, if there are few or no risks or harms done to him, it would seem like a good idea to reduce the amount of lead in his system. However, one thing I do not know the answer to is whether lead that is not in the blood affects someone in the same way as lead that is in the blood. Is lead in the tissues safe because it is not moving around in the body? In other words, what are the risks of doing nothing?

Symptoms

My son currently has two doctors with experience chelating heavy metals from children. Some of the things that these doctors said we should watch for include GI symptoms, stuttering changes, fatigue, muscle pains, and so on (all things that could also be affected by his Lyme disease, or just be random and unrelated). Most of these symptoms are infrequent (aside from stuttering), though GI symptoms have perhaps been most noticeable after stuttering. One of my son’s doctors said that he notices a clinical change in about 25% of those he chelates, although he sees measurable reductions in the body’s heavy metal burden in 75%. Twenty-five percent is lower than I expected, so it’s not clear that we should expect to see much change after doing the chelation.

Treatment

The standard treatment for heavy metals is chelation. As with Lyme disease, there is controversy about treatment, and it may involve politics and money. There seem to be a collection of caring doctors who have experience using chelation, many associated with the autism movement. Some of the most well supported evidence for chelation and how to approach it is available on the “defeat autism now” website. There are also books and essays and stories even from people I know which constitute anecdotal evidence of cases where chelation seemingly helped. These stories are generally so striking in the changes that occurred that they seem quite believable, though that’s not expected with my son. However, as with Lyme disease, the information varies in its scientific quality, and without two years to read about it (as I have had with Lyme), I do not consider myself an expert nor sure exactly what to believe or not believe. What I do know is that the doctors I have chosen are both very experienced with chelation, including chelation of children. If I am to consider this path, I would prefer to do it with the help of experts.

There are different ways to chelate (IV DMSA or EDTA, oral DMSA, suppository EDTA, and transdermal). For my son, the treatments being considered are oral DMSA, possibly combined with suppository EDTA, given every 3 days for several months and possibly up to 6 months or a year. Although my son has adjusted quite well to the oral medications he must take, I feel very uncomfortable with the psychological impact of bi-weekly suppositories (it seems like an emotionally fraught way to take medication, especially for a young child who is fairly convinced that we’re treating him for something that he does not experience as sickness). So the questions I have been asking myself over the past few days are (1) whether to chelate at all and (2) whether to use the suppositories or just oral DMSA.

Some of the things that need to be considered with regard to chelation are: How to prepare the body; what protocol to use (how often to chelate, at what dose, over what period of time); and what risks there are. A nice layperson summary of these issues can be found at danasview.net. One thing that seems very important is the need to make sure that the heavy metals freed up by chelation leave the body instead of redistributing to places you don’t want them (such as the brain).

According to the two doctors I consulted who do chelation of this sort frequently, there are not a lot of risks if we correctly prepare my son, give him appropriate supplements (to replace minerals such as calcium that are removed by the chelating agent along with lead), and so on. Regular testing is a must as well to check for developing problems and track the impact of the chelation on the heavy metals. Natural detox agents are also worth using (such as liquid chlorophyl and so on). Other suggested supplements were alpha-lipoic acid  [slow release], anecetal cystine, chlorella, and possibly transdermal glutathione.

I found one person who had successfully chelated her very young child with only natural and homeopathic methods since this began, but I don’t have a lot of information on her protocol yet, and I have no idea how the heavy metal amounts her child has compare to my son (certainly, the symptoms were more severe, but there’s many open questions). Her doctor is in CT, and it seems a big jump to switch to that person just to avoid DMSA, which I have been assured by the doctors experienced in using it has manageable side effects.

Tradeoffs and Decisions

In the end, I guess we’re deciding between three things. What are the pros and cons?

1. Do nothing. Pros: If we are able to stop the antibiotics soon, my son could forget all this ever happened very quickly and move on. Cons: Hard to be sure. Are the heavy metals one reason he stutters? Would his immune system function better without them? Could he develop additional symptoms (or worse symptoms) down the line if we don’t treat?

2. Use DMSA (oral) only. Pros: We’d remove a known poison from his body. There’s a small (25% or less?) chance that we’d see clinical changes in him, but in any case, we’d be detoxing his body from something that doesn’t belong there. Cons: The risks aren’t great, as long as we do monthly blood tests and take lots of supplements. However, the monthly blood tests and constant medication are going to be a real challenge.

3. Use DMSA and EDTA (suppository) together. Pros: This would take half as long (4-6 month instead of a year) as the DMSA treatment. Plus all the pros of (2). Cons: The same as (2) plus the potential psychological impact of having to insert a pill in his rectum every 3 days for 4-6 months. To me, this really seems like a violation, but I don’t know how my son would view it.

I think we’re going to split the difference and go with (2) for now. We can always decide to speed things up or let him try the EDTA and then decide (since I will probably use it for my own heavy metals).  Why not just leave it alone? I guess it’s the frogs in the pot theory that I’ve been using to explain a lot of things lately. Supposedly if you put a frog in a pot of water and slowly turn up the heat, it won’t jump out. It just sits there and eventually cooks to death. I think we’re all stewing in a pot of environmental toxins, and I don’t believe we truly know where to draw the line. In this case, I know my son has high exposure. It just doesn’t make sense to me to leave it inside him.

[1] Richard L. Canfield, Ph.D., Charles R. Henderson, Jr., M.A., Deborah A. Cory-Slechta, Ph.D., Christopher Cox, Ph.D., Todd A. Jusko, B.S., and Bruce P. Lanphear, M.D., M.P.H. (2003). Intellectual Impairment in Children with Blood Lead Concentrations below 10 µg per Deciliter, New England Journal of Medicine, 348(16):1517-1526.

9 thoughts on “Chelation?

  1. I really appreciate your blog. I was recently diagnosed with lyme and am concerned about my two young children. Every time they complain about something I cringe. I am a CMU grad (2002), and have been shocked at the politics involved in our health and our children’s health. Thanks for putting your questions and voice out there.

  2. Have you thought about a more benign chelation such as Liquid chelated gold with A.L.A to cross the blood brain barrier, then adding glutathione cream, and OSR. I really would look at getting rid of the lymes first, and cleaning his blood with minerals. The reason why i say minerals, is because the LYMES will always mess with the PH, the bacteria upsets the level as does sulfur chelating agents. Two of the same properties..at their highest. You might want to look into zeolite to balance ammonias, (elements for life)..I use chelated gold9purest colloids) and “chelate mate” (nbnus.com). I avoid calcium that is not bound or balanced by other properties, I can only get it from cod, or cal mag in citrate form, however, there is already an abundance in cod, and when you are dealing again with lymes, you might want a fermented cod to clean bacteria made by green pasture. Do you use serrattio enzyme for lymes as well?…I really don’t think that a whole body bacterias infection such as lymes needs more sulfur properties mobilizing mercury and lead. The PH has to be right, meaning you would have to flush the body with minerals. if any thing, he needs an iv of minerals and glutathione at the least for chelation on a gentle regimen until the lymes is gone. After that I would do glutathione cream, and then built on with gold, zeolite, chleate mate, and then introduce ALA, then OSR> I have a rule that minerals need to match the ratio of sulfurs used as chelating agents. A good way to neutralize PH during this time is to give mass amounts of probiotic and possible clay with meals, so that the PH of what the child ingests is not of set as well. This is a very opinionated message, and thank you for letting me share, I came across your blog by accident and thank you for writing about this, I am designing a lymes protocol for my friend and I am using balancing minerals for acidity of lymes bi products. I am using zeolite, all the minerals spoken of before, and serratio peptidase, fermented cod , food allergy testing delayed, probiotic saturation with rotating refrigerated and un refrigerated strains, antibiotics possibly with hyperbarics, and ALA to cross blood brain barrier and repair liver. I will give her an agent to digest all foods and really relieve her digestive and immune system to heal. I am also going to work on doing glutathione IV. im pretty sure that we have to do the igenix test,she has been diagnosed in the past for many years since age seven. Any more suggestions would be great if you have time.-mattea

  3. Also, lead is a sighn of mercury , as you know mercury is hard to provoke just as LYME is, and if lead is present, mercury is as well, has he done a porphryns test from the French lab? That would dtermine right away if he has both. mercury has a pecking order, and in most tests it does not show up, however, lead always does. I would try the french lab …It is in- expensive, and gives a good hormone indication if mercury and lead are allowing the spilling of porphryns into the blood stream, a very creative way to know this is through hormone, and is a signature of this particular lab. .You don’t necessarily need a Drs sig, they send it to you in the mail, it is used by the practice i volunteer at, and with most alternative docs,and docs treating dentists, it is in fact the #1 test used by dentists for mercury.now. to get a true mercury reading you have to use provoking agents for a while.
    .http://www.labbio.net/

  4. Thanks for your thoughts. I am now using zeolite, and glutathione cream with Vit. D/zinc included, calcium, lots of chlorella, and so on. His Lyme is under control right now and we’ve moved from antibiotics to herbs for it. I also try to encourage a sauna or salt bath when possible to help with PH. He also tested high for mercury, cadmium, and arsenic, though not as high as lead. I think our current protocol will help to address all of them.

  5. Hi, thank you for your blog. In a short summary~ my son, Foster ( now 5) started stuttering, muscles aches, short temper, and sleeping a lot in December of 2007. After 6 months of trying to figure out what was wrong. We traveled to Kansas City, MO from Asheville,NC to see a lyme specialist. All test revealed he did have lyme and many coinfections. When he was treated it made a world of difference. After a year or more of antibiotic he is now seeing a Accupuncturist. He has sucessfully gone off his antibiotics with out his arthritis creeping up on him. All symtoms of pain are gone, but his stuttering has come back, wich brings a lot of fear to me. I would love more info on how the chelation therapy has helped your son.

  6. My 3 year old daughter was also diagnosed with lyme disease and coinfections 9 months ago and has been on antibiotic therapy ever since. One of her symptoms—and the only lingering symptom now—is stuttering. It is heartbreaking. It went away for two months once the antibiotics were initiated then suddenly came back. It flares about once a month. I don’t know what to do. We are seeing an LLMD. She has only been on oral antibiotics and i’m wondering if she needs IV to cross the blood brain barrier.

  7. My son still stutters. I don’t know if it will go away, but he lives it with confidence and I trust him to handle it. Still hard as a parent, but now it’s all tradeoffs (medicine itself is traumatic)…

  8. Thanks for sharing this. I have lyme and have had some success with frequent dose chelation, using the Andrew Cutler protocol. If you are considering chelating, I believe this is the safest and most effective. It is a Marathon though.So you must have patience. I also had my mercury amalgam fillings replaced before beginning this program. This is essential. So if your child has amalgam fillings do not begin chelation.

  9. We ended the chelation after a few months and are not treating now. The kids seem happy and well, aside from the stutter, which is not currently an impairment, so I’m letting it be.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s