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Chelation Testimonial

By Dad:

My experience in chelation of toxic metals has been strictly limited to lead. It has been a real education for me, believe it! I'm told much of the same information and process will hold true for other toxic metals, but do not take my word on that, I haven't researched others because my boy only tested positive for lead. I will say however, that I absolutely believe that the mercury in amalgam fillings and the mercury in medications (including vaccines) is a major factor in the majority of modern autism.

First of all, I did not find any doctors in my locality who were well versed in this. The one pediatrician we have locally who my cousin (a doctor himself) recommended as being very experienced, refused to talk to us because we were someone else's patient (up his too! We would have switched if he had suggested, but he had no time to help my boy, a child in need. I hope the IRS audits him for tax evasion!)

My poor wife was stuck in the middle of all of this as well. I work dayturn, so she was the one who had to deal with the doctors until it was obvious they were in need of a little "push". That's my job (good cop, bad cop, guess which one I prefer to be?) I began to suspect metal poisoning after frequenting several message boards for autism, and seeing over and over posts about mercury and lead, etc. So I told my wife to get him tested for lead and mercury. Well, the doctor kept deferring (I have my suspicions on this, I think it's because the HMO's pay bonuses for doctors to not run "excessive" or "unnecessary" tests), so finally I told my wife to tell the damn doctors to run the freakin tests, that my insurance was paying them to do things like this, and since we were the money and they were the service, that made me the boss. If they gave her a hard time, I told her to tell them that I would be in next time to discuss why they were refusing a simple request, and if I had to waste a vacation day to do so, I would be less than happy.

The bullying worked, and they ran the test. My boy tested positive for lead, negative for mercury, copper, and something else which escapes me now. We did not test for antimony or arsenic, although those are also common in our children as well. The doctors were freaking out, and they in turn upset my wife. I truly think they had next to zero experience with this, despite a practice that was at least 15 years old. I suspect it's because they never bothered to test children as a matter of routine (which I feel should be mandatory for all children at ages 2 and 5, period). I believe absolutely the study published in 99, which found much more frequent exposures to lead than was thought, and also suggested that the safe level of 10 (chosen arbitrarily) was actually too high.

So at lunchtime one day, I got on the web and went to HUD and the NIH and downloaded everything they had about lead poisoning. Took me a total of 15 minutes to have complete printouts in hand, and both sites were very informative, if brief in their material.

The next item was the first round of chelation. My boy tested 26.4 on a scale where 10 is considered safe (I feel this is still too high) and 45 means you get put in the hospital for blood cleaning. So my boy was at mid point.

They medicine prescribed was Chemet, a sulfur compound taken orally, two 100 mg capsules 3 times a day for 5 days and then two 100 mg caps twice a day till gone (about 2 weeks). We used this chelation process as an excuse to pull my boy out of a very, very crappy public school program (in a school which is otherwise tops in the county, one of the best 3 elementaries in my state, nationally recognized as being a school of excellence. I guess the sped kids are seen as allowable loss).

Upon completion of the first round of chelation, my boy began to be a bit more active. He also went from being totally self-absorbed to gaining receptive language skills, albeit simple commands like "get down", "come here", etc. Hey, it was a tremendous improvement, and we were ecstatic. His blood count after completing the medicine was 8.

Then the Health Dept. came. First my wife got a call from some guy downstate who filled her head full of bullshit about how some houses are sick houses, how we were killing our boy by staying here, etc. She was freaking out, and my refusal to drop everything and find another place to live caused considerable friction. I countered with where are we going to go? How are we going to afford it (my mortgage is only $120 per month, top that!). With 4 kids and a fixed income, the only option would have been to take them all into the combat zone of the local projects, where we may not have been in a sick house, but we would have had to worry about my two preteens smoking crack, my oldest daughter getting raped, my oldest son getting beat up regularly, our car being stolen or vandalized, etc.. Even the other "working class" neighborhoods would have tripled our housing expenses, and we still would have had the mortgage payment to contend with or sacrifice 6 years of equity.

Besides, the HUD site clearly stated that the best method of protecting against lead paint on the walls where abatement wasn't possible (that means tearing out all the walls and trim, and replacing it with new) was encapsulation with a good coating of latex paint. I had painted nearly all the walls already over the 10 years I had been here, first as tenant and then as owner.

When the health dept. came (mandatory in all cases of children with lead), the lead investigator was very helpful. He refuted the sick house notion, by pointing out that every house built before the mid 70's is going to have lead paint in it, it was in almost all paint before then. He also commented on how our paint looked good, tight (meaning not flaking down everywhere) and that the place was clean enough that lead dust should not be a problem. Then he sampled.

He found lead all right. When he sampled he would go to the edge of the room, and pull up at the carpet. Then he would sample the dirt that lay up against the wall, dirt that accumulates over the last however many years. He went to the windows and reached up behind the inner pane to get paint that was probably on there from when they were installed. He did not sample the actual living environment. He also sampled the water.

Before he left, I asked him several questions. One was about encapsulation. He agreed with what I had read on the HUD site, that by keeping a good grade of latex on the walls, you created a barrier that was very effective in trapping the lead. He also agreed that it was seldom the water supply, besides we had very new and mostly plastic supply lines. Finally, he agreed that short of buying or renting a newly built house, anywhere we went would have the same problem. He estimated 85% of the houses in our town would have the same problem (many, many Victs here, and most of the modern houses go $275K+), so really, we would be better served by painting the place yet again, and working with what we had.

This served to placate my wife a bit, but tensions between us still flared up frequently during this ordeal.

After several weeks we got the results back, water clean, two swipes from painted walls clean, samples from areas no one has disturbed for the last God only knows how long, positive. He had satisfied his duty by finding the lead, and we were thru with them.

Shortly after this, we got the last blood test on my boy, and he was back up to 22. My wife lost it. She thought this house was killing our boy. The doctor ordered us to take him out of here for 2 weeks, to see if it continued to climb or if it leveled off. So my wife took him and left me and the other 3 kids here. She stayed at my folks' house who conveniently were in Florida for the winter. If they hadn't been gone I don't know what we would have done, as none of our relatives want my boy anywhere near their house, and there's no way we could have afforded a hotel.

I got back on the web, and discovered (after about 5 minutes, back at the NIH) that chelation is not a one-time deal, that multiple rounds are necessary because of rebound. The body is basically a big solution, and all parts want to be in balance. Chelation only works on the free lead in the blood, and to a lesser extent the lead in the fatty tissues. The lead that's in the bone marrow (principle storage area in the body) is not touched by this, so what happens is this: you clean the lead out of the blood, and then over the next several weeks it is leeched out of the marrow back into the blood until a new balance is established. Then you chelate again, and continue until you are down to the desired level.

We survived the house challenge, during which time I repainted the whole damn place. Lots of fun, my wife ready to leave me, the older kids missing their mother (they were in school, and there was no way she could drive them back and forth), me working all day, then coming home, doing all the chores and painting this place over the course of 10 days.

With 3 days left to the exile, I went into the doctor with my wife and asked about a few things. I asked what pulling him out of the house accomplished. She said the next step after the determined the leveling off was to challenge the house and put him back in it to see if it went up again. I asked her why she thought the climb in his level after round one was new lead ingestion and not rebound. She said it could be rebound but they didn't know. I asked her to explain rebound to my wife, and she couldn't do it, so I explained it, noting that the NIH called it expected. I asked the good doctor if my boy went from 8 to 22 in the 6 weeks after his chelation, why was he only at 26 after 5-1/2 years of living in the house. She looked at me much like a cow looks over the fence at traffic. I then asked her how she thought my boy got the lead in the first place. She said it's in the air all around you in certain houses, that there were sick houses and that it couldn't be helped except by moving. I then asked her why none of the other kids had elevated lead counts, seeing how we all breathed the same air, my older two having breathed this air much longer, should have been in the high 40's, and they weren't. Now she looked more like a fish than a cow, opening and closing her mouth rapidly.

I asked my wife to excuse us, and then I read this woman the riot act. I told her I didn't appreciate her needlessly filling my wife's head full of fear, when it was obvious she did not know what she was talking about. She started to say something about being a doctor, and I cut her off by pointing out it took me all of 15 minutes to get better information from the NIH's website, which showed me how little effort she had put into researching this problem before she started making decisions. I asked her if she was familiar with PICA, and she half heartedly said yes. I asked her if she was familiar with the fact that autistic and retarded children suffer from PICA much more often than "normal" children, that it made them metabolize toxic metals much easier, and that the source of the lead could be any number of things not directly related to our house. She wasn't aware of any of this. I told her that I already knew that, and expressed my dissatisfaction with her bedside manner in no uncertain terms. I then told her we were doing another round of chelation and for her to set it up.

The bullying worked and we did round 2. Upon completion, my boy began to echo words for the first time, his receptive language got much better, and his play activities became much more determined, by which I mean you could see he was thinking about doing something, and then doing it instead of just reacting to what was in reach. He also almost completely stopped lining up pencils, stacking vcr tapes etc.

Shortly after completion of round 2 we began Lovaas [ABA] with him, and it has also helped. I do not think he could have started Lovaas without the first 2 rounds of chelation.

When we tried to set up round 3, they balked, citing unspecified side effects. I asked what and they did not (could not?) answer. My wife found a dr. in Cincinnati who is very experienced in chelation, over-seeing approx. 100K children in the OH/KY area for lead specifically. He assured her that not only were there almost no cases of side effects from Chemet, but that even if a child had no lead in them at all, it would not harm them, provided they were not hypersensitive to sulfur compounds. Once again, my local pediatrician displays not only a lack of knowledge, but as a source of disinformation.

This last was the final straw. We left them, and found a new pediatrician, one who actually did a little research before he made decisions. We underwent a third round of chelation, using the same protocol as before. Upon completion of this round, my boy’s lead count leveled off at a little over 14. He also began to make the first steps at expressive language, although it is still spotty. Before we did this round, all he would do is repeat what you had said. Now he would occasionally and spontaneously name things, or look at some one and call them by their name. His play become much more age appropriate. He began building things out of Legos and Waffle Blocks, complex shapes and structures, whereas before all he would build were very simple towers, steps or walls. He also has shown less upset about people changing things. Before this round if he built a wall out of Legos, and you altered it, he would shriek and furiously tear it apart to put it back the way he wanted it. Now he would often time accept that it had been changed and either continue on with the new structure, or else start with other bricks on what he wanted to build (we have two great big totes full of blocks).

Round four went well enough, but I was disappointed that no milestone breakthru occured. His final bloodcount after rebound settled was 11, and the doctor asked us what we felt we wanted to do, if we would stop. I indicated that I wanted to get under 10, so one more round, and he agreed that 10 was the place that the established protocol called to stop. We shall see what happens, think I, after round 5 before we decide if we are thru.

So about 3 days after we finished with round 4, my boy is in the back yard, playing in the sand, while I sat on the couch on the back porch with a tall glass of tea and a book I've been reading for about 3 years, keeping half an eye and one whole ear on him (he still likes to wander a bit) and tried to read a little, but something was nagging at me. I looked up from my book and watched as he carefully packed a bucket with sand, before turning it over and making a castle. (Ok, who really knows what he is building, certainly not a castle, cause they are not in his interest).

And then I knew what it was. I was watching my boy play appropriately with his toys. Just a week before, the only use he had for sand was a stim, like throwing it in the air and watching it fall, or pouring it out of the bucket to watch it fall, or else he would pour it over his head or feet (or yours if you are in reach). But never before would he make a sand castle, even with my older kids making it with him.

So we watched him, and sure enough, everything that he played with after that was used in the manner that it was designed for. So round four gave us a definable gain, as we removed more of the lead from him.

We waited quite a while between rounds four and five. This was not intentional per se, but life has a way of getting busy and when we are chelating, we need to make sure that we can adhere to the protocol’s schedule and that there are no other pressing demands which would make it too complicating. Perhaps this does not make much sense to those who have not gone thru chelation with an autistic child, but there are behavioral regressions which can occur when you are stirring up the metals in the child’s body, and they can be problematic if you are not prepared to weather the storm. We have been very fortunate with my boy; our philosophy of hands on affection and our acceptance of his uniqueness has allowed him to retain an overall pleasant disposition. Still, there is the need to be fully prepared for the worst case scenario.

This round was to be different however. After some degree of consulting with other parents who were chelating not for lead as we were, but for mercury it came to my attention that DMSA will not pull mercury from across the blood barrier in the brain. I am convinced that my boy is autistic because of the thimerosal that was used as a preservative in nearly all the vaccines that he had. So I needed to find a way to breach this barrier and pull ay mercury in storage out of him. The answer came in the form of ALA (alpha-lipoic acid), and over-the-counter supplement which has anti-oxidant properties. Several of the drs. who work with autistic children for mercury poisoning use this in conjunction with DMSA, and I have spoken to parents who have followed the mercury protocol with good success.

I picked up a bottle of 50mg tables and after reading pages and pages of testimonial decided to add half a tablet with each dose of DMSA, approx. 25 mg ALA to 200 mg DMSA. We continued to follow the lead protocol as stated above, and did not alter this for the suggested mercury protocol of 100 mg DMSA and 25 mg ALA every 4 hours day and night. After all, we were still treating for lead.

It was interesting that my boy did not like to take the ALA at all. I took one myself to see what it would do, and felt no apparent effect from it, but did notice it had a chalky, gritty texture in my mouth and throat, and was not as easy to swallow as regular pills, so I am guessing that this was why he would balk at taking the ALA. Unlike taking the DMSA, he fought taking the ALA right up until the very end of this round.

I did not watch him closely during this round. Experience had taught me to beginning looking for any changes after the round was completed. And so it came as a complete bolt from the blue when about halfway thru the scheduled dosing I was sitting with him in our living room and saw him doing something he had never done before. Two days earlier we had been to my wife’s father’s house. They have a cat which had just had kittens, and these were not weaned, but running about. We caught one and let my boy hold it (with close supervision, lest he love it to death). He was very gentle, holding it carefully in his cupped hands while saying "nice…soft…easy…" and stroking it with a finger.

So here we sat in my living room, and he was again holding this kitten, saying the same thing. Here was my boy, using his imagination to hold and stroke a kitten that was not really there, just as he had done previously in the week. Using his imagination to see this kitten, to pet it just as we had shown him. We had seen some degree of imaginative play before, but never in the absence of a real, corporal object. Here he was using just his mind to create a kitten in his hands! I nearly cried as I watched him, and I called for my wife to come, to see this latest miracle.

Later we got confirmation of this spurt in development from his speech therapist. She remarked that he had had his best session ever, following directions, performing tasks as requested, and increased verbalizations. When my wife told her about the kitten, the ST was amazed, and asked us what we thought was bringing this about. My wife related that we were going thru another round of chelation, and the ST could not believe the dramatic effects that this medication could have.

We received a bit of a shock when we went in for the follow up blood work. He had started this round at about 14.5 lead level. We were hoping to take him down to 11 or so, but when we got the final count it was still 14.5. The 24 hour urinalysis was also negative for mercury, which was more than a bit disconcerting. I thought about it, and the only conclusion I could come up with was that the ALA prevented the DMSA from attaching to the lead in favour of the mercury being drawn from the brain. But why then did the urinalysis not show the mercury.

One day on the way home from work I popped by the hospital and got the name and number of the lab that the urinalysis was sent to for testing. I then got on the net again, and searched for the proper test to run for detection of ethyl mercury. The test that came up was the organic acid test. So I called the lab and inquired about the test they ran. Bingo! They do not run the organic acids test unless it is specifically called for by the doctor. The mercury they tested for was the metallic form, such as you might get from a thermometer, an older thermostat switch, or from an industrial setting. So in a round about way I had my proof of mercury poisoning in my boy as well as the known lead.

Round 6 will commence within a month. I am also going to see about chelating myself, as I have had several amalgam fillings deteriorate from loss of mercury, and am sure I have swallowed some of the bits. I can buy DMSA without an Rx from a supply house in Vegas for 1/10th the cost of prescription (gotta love that markup) which makes it cheaper than my co-pay with an Rx. I will follow the mercury protocol, taking into consideration that I am4 times larger than my boy. We shall see what pulling mercury out of my body will do for my problems with chronic fatigue (although not debilitating), frequent headaches, and lapses in concentration.

Hope this has been informative to all!

[my thanks to Dad for allowing me to use this writing on my site]

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