INTRODUCTION

HOW THIS COLLECTION CAME TO EXIST
CRITERIA FOR INCLUSION
ADDITIONAL INFORMATION
WHAT IS GOOD ABOUT THIS COLLECTION
WHAT IS BAD ABOUT THIS COLLECTION
AN INVITATION - HOW YOU CAN HELP MAKE THIS COLLECTION BETTER

"NEGATIVE" RESULTS ARE ESPECIALLY IMPORTANT
IN GENERAL, WHAT IS "WRONG" WITH THESE PRODUCTS?
WHAT  I  RECOMMEND

• CHLORELLA
• CILANTRO
• CLAY BATHS
• HOMEOPATHIC REMEDIES
• METALFREE
• MT PROMOTER (and MT PRIMER)
• NDF
• PCA-Rx
• TTFD
• Other / misc.

HOW THIS COLLECTION CAME TO EXIST

Here is what happens: people post to ask for PERSONAL EXPERIENCES with various chelation products and methods. This happens often, over and over again, with various different products. A post asks, with some urgency, "has anyone here used NDF?"   A week or two later, it is:  "I read about this product metal-free that sounds really great. Has anyone used it?"   Apparenlty only a few people have used it. Each request sparks a round of discussion about the product -- that is, commentary about the product's claims, the ingredients, or theories about why it does/doesn't work. But not much in the way of user experiences. Here and there, once in a while, there are responses from someone who used the product.

Over time reading these requests, I've found it frustrating.  No one gets very much of an answer about people's experinces.

So, eventually, in frustration, I started to collect these posts.

I think the request for "personal experiences" is a valid one -- and I wish there were hundreds of posts, readily available, which neatly summarize people's experiences with EVERY product and protocol.

I've been collecting for a couple of years, so you might think I would have a lot. But, sadly, I don't.  Not at all. What I have is not much. Kinda pitiful, really. But, it is what I have to offer.  We'll just have to start here.

What I am trying to do is answer (or at least START to answer) a common and (IMHO) legitimate question, for people who are already considering a specific product, and looking for information.

What I am NOT trying to do is encourage anyone to think they need to consider any or all of these products.  I'm not suggesting you go research all of these.  I'm trying to provide info on the one(s) that you DO happen to be researching.

If you want to know what I actually think "works best" for chelation, what I would recommend, look here: http://home.earthlink.net/~moriam/Andy_dose_sched.html  There is a continuing and growing body of people who have used this method (small frequent oral dosing) with great benefits.  There are VERY few negative reports. Anyway, that is what I'd recommend.

CRITERIA FOR INCLUSION

This collection is about USER EXPERIENCES.  For any of these products, I could easily find MANY posts where people discuss the product BUT HAVE NOT USED THE PRODUCT.  Such posts are not included here, regardless of how "valid" or "important" the information may be.  If you search in the Autism-Mercury message archive, you should be able to find many discussions of this sort.

The criteria for inclusion, here, is:

• the post includes personal experience or personally observed experience.  I do not screen or select based on whether results are "positive", "negative" or neutral. Any result is okay with me.
• "Personal experience" means the person writing used the product that is being discussed.  I will also include "personally observed" experience.  This applies in the case of a parent who is observing their child, or it could be about a friend or other family member.
• There must be some commentary about the effects, even if the effects are "none" or "mixed" or "neutral".  (In a few cases where the same person has posted several times on a given product, I have selected the posts that I think are most descriptive, and have not included all of that person's posts.)

• the experience relates to one of the chelation products listed below. (I may possibly add others in the future.) This collection does NOT include results of chelation with: ALA, oral DMPS, DMSA, and EDTA.

• the experience is posted on the Autism-Mercury list. I do this for a "practical" reason: if it is posted in Autism-Mercury, then the post is "public", which means anyone, anywhere can read it. (You do NOT have to "join" this group in order to read these posts!)  This makes a significant difference if/when you  find yourself asking your friends/relatives/acquaintances to take a look at this page and read up on <some product>.    [NOTE: I am considering starting another PUBLIC list just for posting experiences with chelation products and protocols. Please write me if you have an opinion about this.]

In addition to links to user experiences, in some cases I have also listed

websites for product information -- This is NOT an endorsement of any of these products.  I generally consider product websites to be advertising, which I read with a jaded eye. (See more information, below, on product evaluation.)

other lists which are likely to have user experiences about the product. Please remember that lists may be biased, and posts may even be screened.  I list these because I believe the product is discussed on the specific list.  I am NOT saying the data there is average, or representative.

• These are real experiences of real folks.
• I'll take any kind of user experience.  I am NOT selecting for "good" or "bad" experiences. In fact, some of the posts included are quite ambivalent and quite undecided as to whether the product is helpful or not!

• I don't have a lot of posts. I have no illusion that what I have collected here is "adequate" data. (It is just "more than nothing".)
• The people writing are self selected, not random, average or statistically representative. It would be much better if I had, say, comments from EVERYONE who bought metal-free over the period of 3 months.  THIS IS NOT A REPRESENTATIVE SAMPLE. Nothing has been done to try to make the results representative or average or selected in any meaningful way. It is simply the ones I've been able to find.
• Many of the posts are from people who use a combination of products and ideas, such as several types of therapies and supplements at once, which makes it less clear which effects are from which product / therapy / supplements / etc..

• Please post about your personal experiences with any products listed which you have used. Please post your experiences, even if the results were unclear or confusing.   If you are not looking for feedback or comments, please say so.
• Ask your friends to post about their experiences, too.
• If you are on another list where some product is frequently discusses, please ask that the folks on that list to post (on Autism-Mercury) about experiences with the product.  [NOTE: I am considering starting another PUBLIC list just for posting experiences with chelation products and protocols. Please write me if you have an opinion about this.]
• I am also looking for people to "monitor" the Autism-Mercury list on an on-going basis, looking for posts that should be added to this collection. To do this requires that you regularly look at all (or at least most) of the current traffic.  Please write me if you would be willing to consider doing this! Thank you.

Here are some considerations and thoughts about evaluating chelation products.  I'm talking, here, about what would be needed to evaluate a product WELL. Much of this data does not exist, or is not available.

• I would want to have the results of many real users, as wide a range as possible.
• Ideally these results would be from all users (over a given time period), or from a large randomly selected set of users (as in a study). This makes the reports more "average" and more statistically relevant.
• The results need to be "objective", including negative, positive, and neutral results -- not just users selected because they had "positive" results.
• Ideally the people have used the product for a good long time, so that we know what happened over a reasonably long time period.
• Ideally the results are standardized, and observed / measured by outside people (in addition to the users themselves)
• Ideally the people are not ALSO using several other interventions / methods.  (This is not likely!)
• I  need to know what is in the product, and evaluate that, too.
• If your child is sensitive, you may need to evaluate every single ingredient, including the fillers.
• You should read anything available listing the risks and side effects of the active ingredients in the product
• If I am reading promotional (advertising) claims for a product, then I will need to evaluate the claims in some detail, and, in general, will question them.  In particular, I would question those claims which are important to me.

NEGATIVE REPORTS ARE CRITICALLY IMPORTANT.  Even though I say this elsewhere on this page, I want to draw attention to this point!

NEGATIVE REPORTS ARE CRITICALLY IMPORTANT.  No amount of positive reports make a product or procedure SAFE.

NEGATIVE REPORTS ARE CRITICALLY IMPORTANT.  You cannot evaluate the relative "risks" and "potential benefits" if you only know one side of the picture.

Here is an example: the use of IV DMPS for chelation is a VERY UNSAFE PRACTICE. There are many practitioners who consider this standard practice, and routinely recommend it.  You may be told that it has worked just great for many people, and this is probably true.  However, there are ALSO many people who have had very serious problems from IV DMPS.  A couple dozen such people are documented here: http://www.dmpsbackfire.com/default.shtml  If you read these people's stories you may find yourself forming an opinion that IV DMPS is unsafe. At the very least, you will see that it had disastrous effects for these folks, and you can consider that. (Note: some of the people whose stories are documented at the site listed had amalgam fillings when they had DMPS IV's and many had no amalgam fillings.)

IN GENERAL, WHAT IS "WRONG" WITH PRODUCTS?

Here are some examples of the kinds of problems I have seen with chelation products and the websites which promote them:

• a product that does not contain a mercury chelation agent
• a product that is very expensive (as compared to ALA, and DMSA, certainly, and maybe even as compared to DMPS).
• ONLY "positive" user experiences are given for a product.. I  presume that these were selected because they are compelling positive stories. In other words, there is no way to know how common these "positive" results are, nor do we know about neutral, negative, mixed / confusing, or MILDLY positive results. ALTHOUGH  I  PRESUME THAT "POSITIVE" STORIES ARE REAL, I CONSIDER THEM MISLEADING IN THIS SITUATION. They do NOT convince me that the product is SAFE, or even that the product USUALLY has "good" results.
• there have been many negative reports for a product (which are not available)
• there is reference to testing (such as excretion tests), but the sample is small, and/or the users were NOT randomly selected
• the price or effectiveness of the product is compared to "other chelation options" such as IV chelation, which is wildly unsafe, and wildly expensive. Other less expensive and safer options are not included in the "comparison". For example, frequent oral dose chelation is NOT listed in the comparison. Or alpha lipoic acid (ALA) is NOT listed in the comparison.
• a product that has MANY ingredients, making it difficult to evaluate all of them, and more likely that you or your child will have sensitivities to one or more ingredients.
• many incorrect statements about mercury toxicity or detox are listed on the website for a product.
• the company states that a product is "safe" to give/take with amalgam (mercury) dental fillings in place.
• it is recommended to take/give a product without regard to keeping a steady blood level, which is an inferior method. Also, the timing that would be needed to keep a (safer) steady blood level of any active chelation agents may be unknown and not discussed.

I'd like it to be explicitly clear that I am NOT recommending any of the products on this page.  What I do recommend is listed here:  http://home.earthlink.net/~moriam/Andy_dose_sched.html

Thanks for reading, and good wishes.
 
 

CHLORELLA
[Note: the product "NDF" also contains chlorella and cilantro]

109523 rwbinfo@ --  "great results" [using product NANO heavy metal detox, chlorella based]

157286 Ingrid wolfiebear@ --  about chlorella: "I don't really really remember much about it, but I do seem to remember not feeling right"  [Note: this post includes comments on the separate use of chlorella, cilantro, and PCA-rx]
122729 Ingrid wolfiebear@ --  "send straight into attack"

159286 "cochpan" robb.smiddy@ --  "It was as if a veil had been lifted in his brain "

159295 Kendra kendraz@ -- "increased numbness, tingling, pain in hands"; "extreme nausea and terrible headache"; "horrible jabbing pains in head"; "pain in whole side of face"

CILANTRO
[Note: the product "NDF" also contains chlorella and cilantro]

SELF REPORTS:
69638 Kathy kdironside@ -- "really bad experience"; "I thought I was on my death-bed 3 different times"

157286 Ingrid wolfiebear@ --  about cilantro: "it launched me into about an 8 hour long attack"  [Note: this post includes comments on the separate use of chlorella, cilantro, and PCA-rx]
146931 Inga wolfiebear@ -- "had a terrible attack"
133449 Inga wolfiebear@ -- "sent me into a horrible attack"

85703 TheSkyKing@ -- "I paid for it."; "symptoms NEVER GOT BETTER"; "horrible redistribution"
94098 TheSkyKing@ -- "horrible reaction"; "lasted at least 6 months"
91292 TheSkyKing@ -- "horrible depression, memory loss, personality changes, mood swings, etc."

146906 Alison ajarts@ -- "got very bad redistribution issues."; "I get REALLY bad headaches"
149256 Alison ajarts@ -- "HUGE MERCURY REDISTRIBUTION"; "big pain in my head"

115870 Fran flamvent@ -- "I had a terrible time on Cilantro"
115958 Fran flamvent@ -- "loss of power in my muscles where I had great difficulty moving even out of bed"

114076 gregthecanuck@ -- "really nasty migraine"

149283 Mary B. mbrookh@ -- "I was a mess"; "The deep bone pain I experienced took a couple of weeks to diminish and still recurs"

159269 Michele talithamichele@ -- "I felt so much better on days when I ate there " after about 15 months of eating cilantro...headaches, nausea, and other negative side effects "

REPORTS ON THEIR CHILDREN:
34061 Florence florence_ghl@ -- [about her son] "he suddenly became very lethargic, sleepy and weak."

42255 Keith tomato@ -- [his message is down at the BOTTOM of the page] [about his son] "teeth grinding and head shaking"; "scared me"

105466 Lyn taosmama@ -- [cilantro and DMSA] [about her son] "another step close to good cognition"; "when trying two different methods it is difficult to say which has the most positive effect"

158480 Mary B. mbrookh@ -- cilantro: "one dose orally in his office one time and she was off the walls for 24 hours." [Note: most of this post is about other issues.]

REPORTS ABOUT OTHERS:
133299 beigetable@ -- [writing about someone else] "developed severe mercury poisoning symptoms"

133263 Alex Torres M.D. dr.atorres@ -- [writing about patients] "cilantro WORKS"; "neurological improvements"; "psychological improvements"

115929 Andy Cutler AndyCutler@ -- [writing about other people] "Severe electrical sensitivity where none existed before, lasting many years."; "Facial paralysis continuing for at this point 2 years."; "Dramatic exacerbation of anxiety and psychiatric issues"

CLAY BATHS

NOTE: this is about the use of clay baths for the purpose of removing mercury.  ( I believe that clay baths can be very helpful for many specific uses and for  "general health" purposes.)

122866 Stuart stuartfinnes1@ -- [about himself AND his son]  "I've seen no benefit so far."

122850 Debbie TwoTonks@ -- [about LL's Magnetic Clay baths] [about her son] "I have not seen them help at all, yet they aren't hurting either."
127448 Debbie TwoTonks@ -- [about LL's Magnetic Clay baths] [about her son] "I never saw any change in my son for better or worse."

ADDITIONAL INFORMATION ON THIS PRODUCT:
http://www.magneticclay.com/index.php

HOMEOPATHIC REMEDIES

NOTE: This is about homeopathic remedies used  for the purpose of removing mercury.  This is NOT about just ANY homeopathic remedy used for other general purposes. However, sometimes it is hard for me to determine, for a specific post, whether it is intended to be METAL DETOX -- so I'm wondering if I should keep this category here.

105935 "mak4232001de" mak4232001de@ -- "overall health and blood work improved significantly"

122104 Jacquiec1@ -- "Now, one year later, he reads at a second grade level, he has full eye contact..."; "the results have been tremendous"
116210 Jacquie Jacquiec1@ -- "dramatic improvement"; "full eye contact"; "his progress has been remarkable"

159528  "sarahmamaof2" sarahmamaof2@ -- mostly about test results

METALFREE

103549 Kerbob robertbloch@ -- "lot's of regressive behavior"; "very little positive"

130971 Martin mlcowan@ -- "It did cause teeth grinding."

105735 Julie  juliemoffett@ -- [3rd paragraph only] "sporadically difficult (temper, rashes, emotional), but the last two weeks have been fabulous. He's been so darn social and affectionate"

72045 Lori rlzin@ -- "We had no side effects"

152742  Liz Rabbitbrain@ -- "it made me feel better but I had to stop taking it because it increased my period symptoms"

116874 Jill Jill@ -- [writing about someone else] "her young son went from very non-verbal to speaking in sentences"; "Now, a couple of years later, her son is ahead of most of the kids his age."

ADDITIONAL INFORMATION ON THIS PRODUCT:
http://www.metal-free.com/

MT PROMOTER (and MT PRIMER)

68458 Elizabeth EMorabito@ -- "Stimming has almost entirely gone away."; "Expressive language much more detailed "

ADDITIONAL REPORTS ON THIS PRODUCT can probably be found at:
http://groups.yahoo.com/group/pfeifferautispatients/

NDF

68415 shylakookoo@ -- "no effect whatsoever"

46702  "lecopeland73" --  "our son has lost eye contact"; "a whole year of progress...gone"

61357 Tracy tntpilger@ -- "how well my son is doing"; "more social"; "improved receptive language responses"
60956 Tracy TnTpilger@ -- "seemed especially clear and attentive this week"; "noticeable improvement"

127959 Linda lindajaytee@ -- "my mind went completely haywire."
127634 Linda lindajaytee@ -- "My mind got so fuzzy"; "difficult to control i.e. the usual techniques..... didn't help."
143809 Linda lindajaytee@ -- [NDF PLUS]   "I completely lost control of my mind. ."  -- [About someone else] [NDF] "Almost 2 years later and she is still worse than she was before the NDF."

158900 Tami W wtwilken@ -- "amazing results in abstract thought" [Note: most of this post is about other chelation methods.]

ADDITIONAL INFORMATION ON THIS PRODUCT:
http://www.healthydetox.org/

PCA-Rx

118824 Libby rupp5102@ -- "improvements in receptive language, motor skills and reasoning"

128787 Pamela pamelaleigh@ -- "dramatic leap in his development"; "this is helping our son"

69503 Terri rat.richard@ -- "lots of good all round improvements"; "playing together now"
77729Terri rat.richard@ -- "slow gains"; "non verbal has increasingly become very very vocal"

77762 Jennifer dhooten@ -- "exploring more, .... initiating"

60338 Kathy kgreib@ -- "PCA nearly ruined everything we worked for"; "became aggressive, far more oppositional, he began to cry and tantrum"

157286 Ingrid wolfiebear@ --  about PCA-Rx:  "I took PCA for about another 2 months and was continually getting worse and worse and worse, having attacks EVERY DAY now, until I felt I absolutley could not bear/survive it any longer. " [Note: this post includes comments on the separate use of chlorella, cilantro, and PCA-rx]
122451 Inga wolfiebear@ -- "Then I got WAY worse and almost died for several months" -- [about someone else] "she thought it really helped her"
Additional posts from Inga about PCA-Rx:
128850  and  148448 and  148454  and 140461 and  122530 and  122046  and  121493

127788 Michelle justice9999@ -- "I haven't seen any changes"

121288 Tom tomstoeckle@ -- "I've taken 2 bottles without change of symptoms"

148454 Ruth --"no adverse effects"

121283 rywilli24@ -- "her stools....got better."

81389 Marti Martharolfe@ -- mostly about test results while using product.

ADDITIONAL REPORTS ON THIS PRODUCT can probably be found at:
http://health.groups.yahoo.com/group/PCA-RX/

ADDITIONAL INFORMATION ON THIS PRODUCT:
http://www.awakennutrition.com/

TTFD

92020 Kim henrys.mom2@ -- "he dumped .... arsenic, cadmium, and tin. Then.....he began dumping mercury"; "improving dramatically with increased language, sociability"; "real improvements"

98209 Abbie acfloe@  -- "resulted in metals dumping as measured by testing"

71739 Debbie twotonks@ -- more metals excreted & increased OCD

ADDITIONAL REPORTS ON THIS PRODUCT can probably be found at:
Chelating Kids list: http://health.groups.yahoo.com/group/chelatingkids2/ (this list has requirements to join)
Dr. McCandless' list: http://health.groups.yahoo.com/group/csb-autism-rx/ (this list has requirements to join)

Other / misc. products / mixed products

61728 hollyk94@ -- chelation with herbs

71499 Marcy mak4232001de@ -- homeopathic remedies & TTFD & other stuff

147394 Debbie --  Ionic silver, ionic gold

61606  Michele mcro99@ -- TTFD & ALA & other stuff

79112 Jacquie Jacquiec1@ -- AFX spray