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:
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 . 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?
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.
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.
 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.