Welcome! Thank you for visiting the Chelation Therapy for Autism message board. This is a place for support, discussion and friendly debate. This board is designed for those who hold the belief that heavy metal toxicity and/or environmental exposures (ie: mercury/aluminum from vaccination) are the probable cause for regressive autism. This is the main topic of discussion but subject matter is not limited to chelation alone. This message board does not constitute medical advice. Consult your physician for medical advice.
This is a must see!!
by in limbo
This is a web movie about how mercury affects the brain. It took forever to download but it is very, very good. It requires a program called Quicktime but you can download Quicktime at this same site.
I just can't stand it! I finally got to watch the whole thing. Even after chelation, will the tuber(whatever) be able to bind and grow after? Have you read anything? I know Amy Holmes paper said that adults brains have been able to recoup after chelation, but that theirs were fully grown. I don't think that this would make a difference after seeing the way the nuerons are stripped. I think if it can heal and re-build it would regardless of age and if it can't it can't.
This is very emotional for me. My poor baby.
If you find anything out about the healing process, I could really use it. Now I'm going to look into hyperbaric chambers or something.
It's a growth hormone that promotes brain synapse. It is released only during the first month or so prior to delivery and for a couple of months after birth. This particular hormone targets the brain. A Dr. Aguilar in Mexico has had great success treating oxygen deprived babies. He has only recently used this treatment with autistic children and has discovered that after the age of 5 autistic children don't respond as well. He doesn't know why. He does have success with other children up until the age of 9 or 10. They still don't understand why this happens but I would guess it has something to do with the mercury. Especially after watching how the mercury binds to those fibrils (sp?) in the brain.
It's my understanding that he performs some sort of special EEG and measures brain waves to determine if the FGF will be of any help. If so (not all children qualify) he then prescribes injections. Parents give these injections at home. And I believe they give them once a week but it may be once every two weeks. (I just remember it was a whole lot less than Cody's daily allergy injection).
The only other stuff I know is it costs about $2000.00 and you have to go to Juarez to get treatment. But many do claim great success. Dr. Amy treated her own son with FGF. She said that some time after Cody turns 3 but before the age of 5 we will discuss it again to see if this may be an option. I know she was very happy with her son's response and she said the clinic there is very professional. Not at all what you might expect.
I had forgotten the part about 5yo until I started typing. Then I figured I would go ahead and post so that maybe someone could benefit.
I would think there are probably some therapies for children older than 5 but no one had to address that for us. It seems as though I read something about an approach to promote growth and repair in the brain. I will do some checking and email you later. Gonna go check some of my books right now.
I asked Andy about the body's ablitiy to heal and he said after ALL the mercury comes out the body will heal itself that is why it is important that you also do nutritional support. The child's brain is still developing so I think that the children will be o.k.. It takes time because the brain has to heal and it now has to reprogram itself and that takes time. Hope this helps. Vicky
Yes it helps very much. Since I've viewed that video clip, I have been feeling very defeated. This gives me some hope. I'll just take it one step at a time.
I just wanted to remind all of you moms with husbands that are helping you with your children, and are actually SUPPORTIVE. You have a GOLD MINE!
One of the reasons I left my husband(kid's stepdad) is because he is such a downer, every time I get excited about a new therapy I want to try for my son, he shoots me down, and I really have to fight to not slip into deep depression. It is like living with pure scepticism. He just called, and I told him about the class action lawsuit, and he shot me down again, saying "You told me about that 2 years ago...blah, blah" Then he cut the conversation short...have to go...
I tried to tell him that was in the UK...He is such a DOWNER!!!
Thanks for letting me vent...He is coming up from FL this weekend, and I have to really psych myself up for this!~~~I need PRAYER!!! God bless you all! Lindy
My husband can be a real downer too. He just "uh huhs" alot when I tell him what we are working on. Indirectly, he caused the problems that we are having with our school district from his lack of support. He let them know at our first IEP that we differ on an issue. But it is a big issue with how our son responds to people and effects all of their interactions with him. In some ways he is supportive. But he seems depressed over the autism and it bothers me when he'll take my daughter out to breakfast or to play soccer, but never him. (my suggestion to spend time with her, but it is the omitting my son ALWAYs that bothers me) He will take the opposite stand on alot of issues and often wants to do what other parents do with their children, instead of what "works" with our child. This makes my works SO much harder. As you can tell, I have alot of resentment. And I feel because he didn't support me early on, I have become "needier" (than I could have been) about having so much supports now. He never once has looked up anything on autism when he gets on the internet. Not once. (what is that? denial? It has been 5 years since our son regressed) And he tends to have lack of motivation himself. In the 11 years we've been married, he has never cleaned out the garage or basement. Though there are times that it needed it so much. He just gets overwhelmed at any kind of work. He is like a child getting out of things. I'm so busy with Troy, I am too unmotivated myself, to try to motivate him or do some of the stuff myself, which is what I used to do.
You can vent anytime. (I guess I had some venting too--oops! lol)
and I also understand about not having a supportive husband. If it were up to mine - Daniel would still be spinning pots and pans on the kitchen floor.
I dont have to deal with this with my husband but with many other people
by Karen
I guess I'm lucky. My husband is very helpful and supportive. It is others that I have problems with. I just shut up now because i dont want to get depressed. Other than afew close family and friends I dont mention the diet or chelation because they think Im crazy. They look at me like i am a desperate parent grasping at straws. So I just shut up and do it and I know why he is doing well -thats all that matters. When someone tells me my son may never talk I just ignore them. Otherwise it pulls me into a depression and then I am no help tp anyone. I choose to be optomistic and pro-active and if they dont like it tough!
Which tests did everyone do before starting chelation? I'm waiting for hair analysis results and am trying to decide what else I need to have done before going forward. I was thinking of RBC elements and minerals, but what else do I need to do? Thanks!
I just did hair analysis. My son's DAN doc is 99.9% sure that he is toxic(me too) so we went ahead and started chelation last weekend. Haven't even gotten the results yet.
I am also most assuredly very toxic, also...I have 16-18 (all of my molars) LARGE fillings, and they leak constantly...Paul probably got mercury from me before birth,through the placenta, then through breast milk, then vaccines. Makes sense to me, but the poor little guy didn't have a chance...Lindy
Mine didn't have a chance either. I had 3 or 4 Rhogam shots, plus fillings too. My family dr said he could be toxic. He will help with chelation, but is not experienced, so I want to be sure I have all the information he will need. Thank you.
I only had the hair analysis done too. My doc said I could "run tests thru his office", and that he would be supportive. but that is about the extent of help I get there.
I looked into what vitamins/minerals support to give him and started with that for a week and then began chelation. We do montitor urine counts every couple of weeks and have done CBC and Thyroid but other than I haven't done any testing.
I watch his urine for signs of blood or trouble going. I feel his back for pain in his kidneys and feel him stomach for liver pain... dialy. And suppliment.
Hello everyone. I'm going for it! I called the Waters & Kraus Law firm and spoke with Claire Bothwell. She is a very nice lady with a bit of a British accent. She asked several questions: (see if can remember).
Name of child and age. Have we done metals testing? Are we using chelation treatment? Which doc or on own, how do run tets? RH (negative), amalgams? Stuff like this.
She will be sending me a inquiry form. They will need vaccine date and lots, date of diagnosis, etc.
I asked are the only "going after" pharmaceuticals. No, they will be "going after" medical establishments which has administered these vaccines and the ADA. WOW!
I thanked her and told her I was glad to see someone finally going after the "untouchables".
I think that that is incredible. I am glad they are going after the "untouchables" too. Perhaps they will have to take responsibility and start being more responsible in the future. Let us know any interesting developments. (please!) lol And again, Good luck. (P.S. How is the chelation going?)
mmm. Haven't done that in a few weeks. I had Daniel's cbc ran a couple weeks ago and I didn't like what I saw. His neutrophils were low 28 and range is 40-65. And Esonophils were up - and so was another one.
We ended up putting him on duflican for 2 weeks for yeast since he was antibiotics for most of month of January. He is doing alot better. MOre alert and eating better now. So, I had his blood rechecked on Tuesday, waiting for the results on that before I go ahead. I didn't feel comfortable chelating him while he has some type of infection going on and his counts were so off. I am not too concerned about the cells that represent "food allergies", I'm hoping that chelating the mercury will help that problem. But, the neutrophils down and the "infection" ones way up - were enough to stop chelation untill I feel more comfortable with the counts.
Still giving MSM and Epsom salts baths because they really seem to help him in between rounds. He is in a good mood and his skin color is looking more healthy.
If I get the tests back in, perhaps I'll go again this weekend minus the ala and up the dmsa a bit. He was taking Kirkman's low dose. So, it's only 12.5 mgs of both. The merc seems to be still be circulating - no regression so I plan on just going 100 mg dmsa 3 times a day for awhile and pull out what is circulating. Maybe in a few weeks re-add the ala for a few rounds and see how it goes. Ala causes a bit of regression especially during the first day with him. I don't think that is too much dmsa - he weighs 60 lbs. So, I beleive it's still pretty conservative. What do yall think?
I just picked up some MSM in the store the other day because of the sulfer. I haven't read anything about it and don't quite know what to do with it. How much are you giving a day and what dose? Is it making Daniel happier? Like epsom salts do?
I bought MSM thru Kirkmans (I should own stock in the place!) They suggest 1/4 teaspoon 2 times per day for an adult. So, I give him 1/4 teaspoon devived by two so he gets 1/8 teaspoon.
I put it in soda (sprite) and he has no trouble drinking it. It does seems to stabilize the mood from the sulfer drops after chelation is over. I don't give it to him while he is chelating.
I just got Daniel's blood work back. Wow! what a difference. Check out these values...
March 1 March 28 range comment
Test
WBC Count 5.7 8.1 5.0-14.5
RBC 4.56 4.71 4.0-5.4
Hemoglobin 12.6 13.1 10.9-14.9
Mematocrit 35.6 37.8 32.-42.
MCV 78.0 80.0 73.0-87.0
MCH 27.6 27.6 25.0-29.0
RDW 13.6 13.9 11.8-15.0
Platelet 338 444 H 130-400 (no problem)
Neutriphil 28 L 54 40-60 (yeast!)
Lymphocyte 57 H 35 30-48 (infection)
Monocyte 2 7 H 0-5 (clean up dead viruses, bacteria)
Eosinophil 11 H 4 H 0-3 (food allergies)
Basophil 2 1 0-2
Well, treating with the duflican was very effective. I'm not concerned about the high platelets. (mine are always high. and when I donate platelets I usually give a double product) Monocytes are high - but I look at that as being good - these are the clean up cells in the blood. It means that they are still getting rid off the dead yeast! YEAH!
I'm going for it this weekend with chelation.
When we killed the yeast his food allergies went down - I knew that because he is hardly drinking milk anymore. Yeast causes "leaky gut" and allows the bad stuff into the blood! Wow.
This is exactly what I have been waiting on too. I am so excited. I will be contacting one of the firms first thing in the morning. Luckily I have one within 20 minutes of my home and only 5 minutes from hubby's work. This is incredible. I will let you know what I find out tomorrow.
Has anyone come up with a "form letter" to send to area newspapers, and/or TV stations for autism awareness month in April?
If so, please post it, or forward it to me...My brain is so fogged with amalgam fillings in my head, I can't seem to think straight. At least now I know why I developed this problem!
Just click on doctor search. You don't have to know the doctor's name just do a search on your state and you will get a list to choose from. They have different specialties also. But I have heard that finding a chelation specialist is not that difficult. It's finding one that will treat a child that makes them so scarce. Or that was the problem I had. If you can find one that will treat a child Amy Holmes will do consultation long distance to help guide you and your doctor through her protocol. From what she has charged me so far I would even venture to say that I can't imagine she would be unreasonably high for phone consultation. Hope this helps. Good luck to you.
Some interesting posts by Dr. Holmes to other people
by Shirley
Here are some posts from an autism-mercury group with yahoo
Amy,
Would you mind sharing your sons history and chelation response for our case studies. I'm really excited to hear of his response to DMSA. It sounds only a little short of miraculous.
Lyn
----- Original Message ----- From: Amy Holmes > To: >
Sent: Tuesday, May 02, 2000 8:58 AM
Subject: Re: Re: [Autism-Mercury] Doctors
Lyn,
I would be happy to share Mike's history with you for your case studies. But first, let me thank you for all the work you have done in this very important area. I am becoming increasingly convinced that mercury poisoning underlies all of autism. I finally figured out that Mike's case was most likely due to mercury about a year ago, but I had no idea of the scope of the mercury problem until I went back into practice (this time as a DAN! doctor). Almost every child I tested had the same lab abnormalities as my son, including the high levels of various heavy metals. Very uncanny! Anyway, thank you for starting this list and for everything else you have done in the pursuit of the truth about what happened to our children. Feel free to edit this, because I'm not sure exactly what info you want.
Mike - DOB 10/18/94
Unremarkable pregnancy. Born by planned C-section (advanced maternal age and very large baby). Weight 9 pounds, 2 oz. Very healthy. Apgars 8/9. Uneventful first year. Got all immunizations on time. Sat at 4 months, crawled at 7 months, walked at 10 months. Spoke first word at 9 months. By 12 months, had 10 to 15 words. Good eye contact, good imitative skills, very social.
Stopped talking 5 days after MMR plus Hep B at 12 months, gradually lost all imitative skills, all interaction and eye contact. By 18 months was in his own world. Would not even respond to his name. We asked everyone why he was acting this way, including several pediatricians - no answers. Finally diagnosed as autistic at 26 months.
We began an intensive ABA program (Lovaas) at 28 months. We took him to see Dr. Stephanie Cave at 29 months. She ran a number of tests, including hair analysis for heavy metals. He was very high in lead, aluminum, and antimony. Mercury was only slightly elevated. She gave him DMSA 100 three times a day for 5 days, followed by 100 mg twice a day for 2 weeks (the old treatment).
By 1 month after this first chelation course, he had improved noticeably - behavior was better, no longer as "zoned out" as before, was no longer pale, looked healthier. Repeated the hair analysis several months later. This showed a significant drop in lead, but still high antimony and aluminum, and to our surprise, a high level of mercury. No one knew what this meant at the time - this subsequent high level of mercury meant that mercury had been mobilized back into the bloodstream, thus could finally show up in the hair. Looking back, if we had realized the significance of this finding then, Mike would be completely recoved now.
After this, we pursued other areas like getting rid of yeast and pathogenic bacteria, gluten and casein-free diet, getting rid of multiple food allergies, and did not return to the heavy metal issue until he was 4 years old. By this time, I had taken over his case. I repeated a hair analysis for heavy metals when he was 4. Mercury had dropped (of course - it had gone back into its favorite storage areas), but aluminum and antimony were still very, very high, and the lead was back up to elevated range.
I started him on a kinder, gentler course using DMSA 200 mg TID for 3 days, off for 11 days while repleting minerals. I repeated this 2 week cycle for a total of 4 cycles, then got a toxic urine screen on the last cycle. To my surprise, tons of mercury were coming out. That is when I started investigating mercury-autism connection in Mike's case. After a few weeks, I was convinced that mercury was responsible for a lot of his problems, so we continued with the same 2 week cycles of DMSA for several more months, repeated the urine toxic metal screen with almost the same findings. From April of 1999 to the present, I have been doing these 2 week cycles, 4 to 6 at a time, then allowing him a month off now and then to fully recover from the chelation. We got a urine toxic metal screen last month (4/00) which showed mercury at 2.7 ("normal" range > 0 - 3). This is the first time he has ever been in the "normal" range for mercury (provocative urine).
One year ago, Mike was essentially non-verbal and preferred to engage in meaningless self-stimulatory behaviors. Today (5/00), he speaks in sentences, addresses people by name to get their attention, and no longer "stims" non-stop. His receptive language is excellent, expressive is still 2 years behind his peers (but is catching up fast). His pronunciation, which had been so bad as to make any words completely unintelligible, is now improving to the point that we can understand almost everything he says.
I intend to continue chelation until no more mercury comes out on provocative urine toxic metal screen.
Hope this helps,
Amy
Originally From: AndyCutler@a...
Subject: [Autism-Mercury] Doctors
Date: 04/25/2000 12:42pm
I don't know any mercury toxic adult who got better by depending on one doctor, mainstream or alternative. All the adults I know who got better went through a lot of doctors. They all found this extremely alienating and emotionally traumatic. I doubt it will be any different for those of you who end up getting your kids well - I suspect you will go through a lot of doctors and be pretty upset about MD's in general by the time you are done. As with the adults, I expect your choice is the emotional turmoil and alienation involved in running roughshod over a bunch of doc's to get what you want, or developing a long term relationship with one or two doc's who never do get your kid well. For the most part I don't think this is the doctors' fault. They are as much victims of the system as we are. Bouncing from doc to doc just seems to be the only thing that has a hope of working - I am sure it is as tough on the doctors as it is on us.
Andy Cutler
Andy,
Speaking as a physician and a parent of an autistic son, I can tell you that it is not traumatic to the doctors at all - most of them go home to nice normal kids and never give our kids a second thought. My son's pediatrician said," I now have 20 autistic kids in my practice and I don't know what to do with any of them." He was very perturbed when I had the audacity to ask him if he had ever thought about WHY he had that many autistic kids in his practice when both of us learned in medical school that it was extremely rare and a pediatrician could finish 50 years of practice without seeing even 1 kid with autism. To be perfectly honest, the people in my med school class who went into pediatrics were not great thinkers. They were just nice guys who wanted to do something that didn't require a lot of thought.
Your comment about parents figuring out the problem when physicians should have done it 20 or 30 years ago really struck home. You are completely correct on that one. I have learned the hard way that the only physicians who really care about our kids are the ones with kids just like them at home.
BTW, add me to the list of people who have used DMSA on my child with great results. My son, Mike, was very high in lead, aluminum, and antimony, but I suspected that the real culprit was mercury. He has been on DMSA chelation - 3 day "on"/ 11 day "off" for about a year. His clinical improvements have paralleled the drop in his urine lead and mercury levels. He has gone from an essentially non-verbal 4 year-old to a very talkative (very bossy, I might add!) 5 year-old. His GI problems have completely disappeared. He is no longer pale with dark circles under his eyes. His receptive language has gone from the 5th percentile for age to the 45th percentile.
I wonder if it is too late to get a urine porphyrin test?
Another question - considering that mercury irreversibly inhibits DPP IV, if I can get all the mercury out, dare I try re-introducing gluten and casein? It would be so nice if he could go to McDonald's and get a Happy Meal like his friends do.
Just my thoughts,
Amy (formerly mainstream physician, now DAN! doctor)
Maranie,
I hope you mean 3-day on/11 day off !!!!! Otherwise we could all be in trouble!!!
I just got back from the Mercury Toxicity workshop in Dallas. Very informative. Stephanie Cave and I were lucky enough to have a long discussion with some really great researchers. From everything we've been able to piece together, it looks like mercury is a big culprit in autism - maybe the biggest. But, it doesn't look like most cases are purely mercury and mercury alone. There are some other heavy metals that play a big part, both by themselves and by (horrors of all horrors) potentiating the toxicity of mercury. And there are several non-metal toxins we need to take a very close look at - like hexane and xylene, among others. Many of these are toxic to the brain by themselves and exacerbate the toxicity of the heavy metals.
Most felt that autism was most likely a neurotoxic disease - and
that is a huge step forward. A few cases were presented showing
dramatic improvements (like "normalization") in autistic children
after complete detoxification.
There is a lot of work to do. Like:
1. We need a battery of tests to completely assess toxin load,
both metal and non-metal. This looks reasonably easy.
2. We need a quick, non-invasive (no more invasive than a blood draw)
way of assessing brain mercury load and effect on brain of the
mercury present there. A promising lead may be the BB fraction of CPK, but this might not pan out.
3. We need a safe and effective protocol of getting rid of all the toxins. This part doesn't look extremely hard at the present time.
It just needs to be put in a coherent whole and in order.
There was a lot of data presented about mercury vapor exposure from amalgams - and (more pertinent to us) the fact that this mercury can be (and more than likely is) transmitted to the fetus. And the transport of amalgam-derived mercury through breast milk. This stuff really shook me up because I have a mouth full of amalgam!! The extreme toxicity of organic forms of mercury were very apparent. But, it became rapidly apparent to us, at least, that as much as we would like to, we cannot blame the mercury in the vaccines for all the mercury in our kids. And mercury is not the total problem.
So, the good news is that autism is really beginning to look like
a neurotoxic problem, with all the other biochemical problems
secondary to the presence of the toxins. This is good news because this is something we have a chance of fixing. (I like things I can fix. I don't like hopeless conditions!)
And it appears that, if you can get these toxins out at a reasonably early age, the child can be "indistinguishable from his peers".
Personally, I don't care if my son is a party animal or not, but
"indistinguishable from his peers" is my goal.
Also, for the older kids (teenagers), more than likely getting the toxins out is not going to completely normalize them, but you may be able to avoid or fix the problems relating to violence and uncontrollable behavior. I have some patients in this very situation, so this is of interest to me. I hate the thought of these kids winding up in an institution because of uncontrollable behavior, so I hoping this may be their ticket out of this horrible fix.
Mike is demanding my presence. He is very bossy, but he is talking!!!
Amy
KB,
Our son's doctor is Dr. Amy Holmes, from Baton Rouge. You have seen her post here before, probably! She is a DAN doctor and has our son on a three day on, three day off regimen. He gets 100mg of DMSA three times a day while on the three day on segment. During that time he doesn't get any other minerals supplemented. During the eleven days off, we load him up with all his vitamins, and supplements. I trust her immensely, as she is also doing/done this program with her own son. Hope this helps!
The US government has a compensation program to compensate people whose children are vaccine injured or died. It is slow and can take up to 8 years. The compensation cap is $250,000. Not necessarily enough to pay for our children's lifetime upkeep. I hope others will file real lawsuits with these attorneys. I think that will really shake things up and get research done faster.
Posting this from another board.
First Mercury Poisoning-Vax Case Filed
[This is for our readers information only and should not be considered legal advice. From Autism Society of California, ASA newsletter.]
The law firm of Waters & Kraus, LLP, based in Dallas, Texas, announced today that it has filed the first known civil case alleging that the mercury-based preservative thimerosal, used recently in more than 30
childhood vaccines, has caused mercury poisoning in many children.
Counter, et al v. Abbott Laboratories, et al, (Cause No. GN 100866, 200th District Court - Travis County, Texas). The symptoms of mercury poisoning are, in many cases, identical to the symptoms of autism, although
the suit does not allege that all persons suffering from the symptoms of autism do so as a result of mercury poisoning. However, many children
suffering from mercury poisoning have been previously diagnosed with autism due to the similarity of symptoms.
Children have been exposed to cumulative levels of mercury from the vaccines that exceed threshold safety levels that have been established by
the United States Environmental Protection Agency. In many instances, children carry unmistakable evidence of mercury poisoning and the symptoms of mercury poisoning were first manifested after receiving vaccines tainted by thimerosal. In many cases, children exhibited normal neurological and other developmental patterns until such time as the cumulative dose of mercury caused irreparable damage to both the neurological and the general
developmental process. For example, many children had developed language and other skills that were later lost as the result of the cumulative exposure to mercury. Thimerosal is a mercury-based additive. Mercury has been known to be hazardous for literally hundreds of years, and its dangers have been well
known and documented during all times when the defendants manufactured and/or sold mercury-containing pediatric vaccine products.
Waters & Kraus anticipates that a significant number of individual cases against the vaccine industry will be filed in the near future. The firm anticipates investigating and prosecuting individual claims throughout the United States, in conjunction with the following firms and others:
Evert & Weathersby, LLP Atlanta, Georgia
Dogan & Wilkinson, PLLC Pascagoula, Mississippi
Doran & Murphy, LLP Buffalo, New York
Leach, Schwarz & Strassberg Bala Cynwyd, Pennsylvania
Jones, Martin, Parris & Raleigh, North Carolina
Tessener Law Offices, PLLC
Additional inquiries should be addressed to Melissa Miles at Waters &
Kraus (Dallas), (214) 357-6244 or miles@a... Potential claimants
should call Claire Bothwell at Waters & Kraus (California), (562) 436-8833
or bothwell@a...
I think that the more people that win lawsuits, the sooner the government will want to take care of this problem...more money for research maybe??? I hope so. And you'll need the money. Autism is a very expensive disorder. Not just the direct costs, but the indirect costs, as well. I look at your lawsuit as a indirect service to the entire autistic community. Thank you and good luck! I'll be interested in your progress through the process.
Has anyone noticed their child is happier after chelation?
by karen
My son is 4 yrs old and non-verbal. We have done 2 cycles of DMSA with just minor improvements like slightly better eye contact and more babbling. But he definately seems happier. I dont know what to make of it. Is it possible that he feels better? He isnt cognitively able to tell me if I were to ask him so I just have to guess. Any ideas?
My son is really happy, giggly and silly after chelation
by Shirley
On the other MB, someone said it could be the sulfer in the DMSA, since it is sulfer based. And many parents are giving their children baths with epsom salts now to help make their children happier all the time. I just found a product called MSM at the health food store. It is a sulfer supplement. So, I've just started that too.
I did the first round of chelation on
my son(10,non-verbal) this past weekend...on his 3rd day on DMSA, he brought the bulb syringe, that I give it to him with, and I asked him if he wanted more...he signed "more please" and nodded and also tried to talk. I asked him if it made him feel better, he nodded, and tried to say something again! The day after chelation...last night, he was silly and giggly, always smiling!! Also, last night, at his horseback riding therapy, he did not spin...That is usually the first thing he does when he gets in the barn. Last night he stood quietly and watched as the horses were tacked up! This may be the KEY to unlocking our kids' world!!!!
About a week after chelation (weve done 2 cycles) my son gets happy and we see some small changes. He is babbling new sounds and is babbling a lot- this from a kid who used to be almost silent. His eye contact is a little better and he is playing with toys more appropriately. He can actually entertain himself with a toy for a long time--without a Thomas video on! I dont know if this is a developmental step or changes from chelation. I just hope it continues.
What Is the Risk of vCJD From the Administration of a Vaccine?
Question
What is the risk of transmitting variant Creutzfeldt-Jakob disease from vaccines that use bovine-derived materials from countries where bovine spongiform encephalopathy exists?
N. Indich, MD
Response
from Robert W. Steele, MD, 03/20/01
Bovine spongiform encephalopathy (BSE) is a progressively degenerative neurologic disorder of cattle. Now commonly referred to as "mad cow disease," this disease was first recognized in England in the 1980s. In 1996, human transmissible spongiform encephalopathy, also known as variant Creutzfeldt-Jakob Disease (vCJD), was recognized in the United Kingdom.[1] Further epidemiologic evidence suggested that vCJD was associated with the ingestion of beef products from cattle containing the BSE agent.[2]
In 1993 and again in 1996, the US Food and Drug Administration (FDA) stated its recommendations that vaccine manufacturers not use materials derived from cattle born, raised, or slaughtered in countries where BSE is known to exist. A list of these countries, as well as countries where import requirements and surveillance are considered inadequate, is kept by the US Department of Agriculture (USDA; Table 1).[3]
Despite this recommendation, bovine-derived materials are used in multiple pharmaceutical products, and, this year, the Center for Biologics Evaluation and Research of the FDA discovered several vaccines were being produced using bovine materials from animals on the USDA's list (Table 2).[1] However, there have been no reports of vCJD associated with administration of biological and pharmaceutical products containing these bovine-derived materials.[4]
Nonetheless, realizing that contamination of these products is a potential problem, the FDA requested all vaccine manufacturers replace their products made with bovine-derived materials from unknown sources or on the USDA's list with bovine-derived materials from countries not on the USDA's list as a precautionary measure.[5] All manufacturers have agreed to do this, and full replacement is anticipated within the year.
To assess the potential risk of transmitting the BSE agent through vaccines, several factors have to be considered:[1]
The time period, country of origin, specific herd, and animal husbandry procedures that were used with the cattle
How infective the materials are that were used in production
How much bovine-derived material was present in the final vaccine product
These issues were discussed in a recent joint meeting with the Transmissible Spongiform Encephalopathy Advisory Committee and the Vaccines and Related Biological Products Advisory Committee, where it was concluded that the risk of transmitting vCJD through vaccines is theoretical and remote.[1] At this time, benefits of vaccination are considered much greater than the remote risk of contracting vCJD through immunization.[1,6]
Table 1. Countries That Have Reported Bovine Spongiform Encephalopathy
Great Britain
Belgium
Denmark
France
Germany
Ireland
Italy
Luxembourg
Liechtenstein
The Netherlands
Northern Ireland
Portugal
Spain
Switzerland
Oman
The Falkland Islands
Canada
The Azores
Table 2. Current List of Vaccines Using Bovine-Derived Materials From Countries on the USDA's BSE List or From Unknown Countries
Vaccines that use bovine-derived materials from countries on the USDA's list:
Aventis Pasteur, S.A.'s Haemophilus influenzae type b conjugate vaccine, ActHIB
(ActHIB is also marketed as OmniHIB by SmithKline Beecham Pharmaceuticals)
North American Vaccine Inc.'s diphtheria and tetanus toxoids and acellular pertussis
(DTaP) vaccine, Certiva
References
Center for Biologics Evaluation and Research. Bovine spongiform encephalopathy (BSE). Available at: http://www.fda.gov/cber/BSE/BSE.htm#usda
Spongiform Encephalopathy Advisory Committee of UK statement of 20 March 1996. Available at: http://www.maff.gov.uk/animalh/bse/index.html
USDA Code of Federal Regulations, title 9, part 94 (9 C.F.R. part 94).
Minor PD, Will RG, Salisbury D. Vaccines and variant CJD. Vaccine. 2000;19:409-410.
Notice to readers: public health service recommendations for the use of vaccines manufactured with bovine-derived materials. MMWR Morb Mortal Wkly Rep. WeeklyDecember 22, 2000;49:1137-1138.
Centers for Disease Control and Prevention. Update: vaccines and bovine spongiform encephalopathy (BSE). Available at: http://www.cdc.gov/nip/vacsafe/concerns/bse/default.htm
Call me paranoid but I wonder about BSE being covered up here in the US. This resonates of the same sort of propaganda that we have already been bombarded with concerning autism. Or is it just me?
It makes me feel like they may have already suspected just such a case and are in the first stages of full blown denial.
And too, I find it interesting that the US reports no known cases of BSE when I believe it was last June that in a hospital in New Orleans a man died from complications of BSE. He had already undergone brain surgery and before they discovered he had BSE they had subsequently operated on 8 other patients with those same instruments. Now those patients are receiving counseling on the probablities of their contracting BSE. Because routine sterilation of surgical instruments does not kill the BSE. Scary, huh? I did a little research on this a few months ago. Also discovered that the TB skin patch test is derived from, get this now... "purified bovine protein derivative". My thoughts are if they can't clean a surgical instrument with sterilization, how the hell are they gonna purify a cow protein? Geez, these people make me furious!
On April 12th watch Montel Williams Show--Autism Awareness Month
by Shirley
I got this from a different board.......
On Thursday, April 12, 2001, The Montel Williams Show will spend an hour discussing several issues regarding autism.
The show features the Gallaghers from Brick Township, NJ, Aidan and Shelley Reynolds from Baton Rouge, LA and Didi Conn, who played Frenchy in the movie Grease. This is the first time that Mrs. Conn has gone public with her child's autism and she was absolutely fantastic! There were several people interviewed in the audience as well such as political officials from Brick Township, Sandy Levine, a behavioral therapist, and Dr. Jerrold Kartzinel, to name a few.
Montel had really done his homework and was asking great questions and making great points!
The show should be pretty comprehensive regarding autism awareness and covered just about every topic that there is from clusters of autism, genetic research, ABA, vaccines, diet, the increase throughout the country, the Congressional Autism Caucus, the Open Your Eyes project, congressional hearings to the cost of raising individuals with autism and how that figure impacts the general public. It covered just about everything you could imagine for the simple purpose of making the general public aware of autism spectrum disorders.
Again, the show airs on April 12th, right in the middle of Autism Awareness Month, so check your local listings. As we receive more information, we will let you know.
Autism/Vaccine connection--now in Scientific Journal
by Shirley
Autism Link to Vaccine, Gluten, Casein: Immune Research Innate and Adaptive Immune Responses in Children With Regression Autism: Evaluation of the Effects of Environmental Factors Including Vaccination
Journal of Allergy and Clinical Immunology February 2001, part 2 • Volume 107 • Number 2
Harumi Jyonouchi; Sining Sun; Hoa Le University of Minnesota, Minneapolis, MN
Etiology of autism is unknown. However, there appears to be a casual association between onset of regression/autistic behavior and infant immunization/viral infection/adverse reactions to common food antigens (gluten and cow’s milk). Previous literature indicates the presence of autoantibodies against neuronal cells in autistic children and subtle immune abnormalities such as skewed T2 responses. In this study, we hypothesized that children with regression autism may have aberrant immune responses against these common, usually benign environmental factors, resulting in inflammatory and/or autoimmune conditions in the CNS. As a first step to examine our hypothesis, we determined innate and adaptive immune responses in children with autism spectrum disorders (N=35, Age 2-14 yrs, median: 6 yr, 24 males and 9 females). Innate immune responses are assessed by measuring production of TNF-, IL-1, IL-6, sTNFRI, and sTNFRII after incubating peripheral blood mononuclear (PBMN) cells overnight with endotoxin (LPS: 0.1 to 10 µg/ml). Adaptive immune responses are assessed by measuring T cell cytokine (IFN-, IL-4, IL-5 and IL-10) production in response to recall antigens (tetanus and dust mite), mitogens (PHA and Con A) and IFN- inducing cytokines (IL-12p70 and IL-18) after culturing cells for 4 days with these stimuli. Production of IL-12p40, IL-18, and TGF- was also measured in this setting. Controls were obtained from healthy normal children (N=17, Age 2-16 yrs, median: 11 yrs). Onset of autism/developmental regression with immunization was reported in 27/35 patients and 32/35 patients were reported to have improvement of behavior by parents/teachers/therapists with a casein-free/gluten-free diet. Autistic children produced higher TNF- (p<0.01), sTNFRII (p=0.038), and IL-6 (p=0.01) with a low dose of LPS (0.1 µg/ml) than controls. This is due to the presence of a subset of patients who produced large amounts of these cytokines. In fact, 27/35 (77.1%) study subjects produced higher than the maximum levels of TNF-, sTNFRII, IL-6 and/or IL-1 observed in controls with a low dose of LPS. We also observed elevated serum levels of these cytokines in 8/18 autistic children. Our results thus indicate a high frequency of excessive innate immune responses in children with regression autism. These results may partly explain apparent association between onset of regression/autistic behavior and immunization in these children. Production of IFN-, IL-5, IL-10 and IL-12p40 was highly variable in autistic children. IL-4, IL-18, and TGF- production by PBMN cells were generally low and did not differ between the study subjects and controls. We also assessed T1/T2 responses by comparing the ratio of IFN-/IL-5 levels produced with recall antigens. The ratio of IFN-/IL-5 did not differ between autistic children and controls. However, 7 and 8 out of 35 autistic children produced significantly high IL-12p40 with recall antigens and IL-12/IL-18, respectively. IL-10 production was markedly variable in autistic children: 10 and 11 out of 35 subjects produced high amounts of IL-10 with PHA and tetanus, respectively, while 12/35 subjects produced significantly low IL-10 with PHA as compared to controls. These results also indicate aberrant production of regulatory cytokines for T cell responses in subsets of autistic children.
Part 2--the Leaky Gut Theory now has support (two different studies now)
by Shirley
Study Lends Support to Leaky Gut Theory of Autism
“This is consistent with increasing evidence for gut
epithelial dysfunction in autism” - Dr. Simon Murch
[Thanks to R. Miles.]
A Distinct Lymphocytic Colitis With Epithelial Damage In Autistic Children Researchers have confirmed a distinct lymphocytic colitis in autistic spectrum disorders in which the epithelium appears particularly affected, and have reported their findings in March's Journal of Pediatrics.
A team from the Royal Free and University College School of Medicine and St Mark's Hospital, London, England investigated the characteristics of colitis with ileal lymphoid nodular hyperplasia (LNH) in children, and determined whether LNH was specific for autism. Ileo-colonoscopy was performed in 21 consecutively evaluated children with autistic spectrum disorders and bowel symptoms. Blinded comparison was made with 8 children with histologically normal ileum and colon, 10 developmentally-normal children with ileal LNH, 15 with Crohn's disease, and 14 with ulcerative colitis. The researchers performed immunohistochemistry for cell lineage and functional markers, and histochemistry for glycosaminoglycans and basement membrane thickness. Histology demonstrated lymphocytic colitis in the autistic children, less severe than classical inflammatory bowel disease. However, basement membrane thickness and mucosal cell density were significantly increased above those of all other groups, including patients with inflammatory bowel disease.
CD8+density and intraepithelial lymphocyte numbers were higher than those in the Crohn's disease, LNH, and normal control groups; and CD3 and plasma cell density and crypt proliferation were higher than those in normal and LNH control groups.
Epithelial, but not lamina propria, glycosaminoglycans were disrupted. However, the epithelium was HLA-DR-, suggesting a predominantly TH2 response.
Dr Simon Murch said on behalf of the group, "Immunohistochemistry confirms a distinct lymphocytic colitis in autistic spectrum disorders, in which the epithelium appears particularly affected. This is consistent with increasing evidence for gut epithelial dysfunction in autism." In an accompanying Editorial Perspective, William F. Balistreri comments, "This seems to point to gut epithelial dysfunction leading to altered permeability and subsequent entry of central nervous system-altering substances. "It follows that treatment of the gut disease may affect the CNS disease."
Virus Warning!!!
DO NOT OPEN "NEW PICTURES OF FAMILY" It is a virus that will erase your whole "C" drive. It will come to you in the form of an E-Mail from a familiar person. I repeat a friend sent it to me, but called & warned me before I opened it. He was not so lucky and now he cant even start his computer! Forward this to everyone in your address book. I would rather receive this 25 times than not at all.
Also: Intel announced that a new and very destructive virus was discovered recently. If you receive an email called "FAMILY PICTURES," do not open it. Delete it right away! This virus removes all dynamic link libraries (.all files) from your computer. Your computer will not be able to boot up.
It sounds like you are trying to decide whether to do both. They each address a different possible cause of autism, so doing one wouldn't cancel out possible problems from the other cause. We know people doing chelation and the diet. The only reason we aren't is that lab work didn't indicate that our son needed chelation. We are convinced the diet is helping him from behavior and we had three different types of antibodies tested and they all showed a real bad problem with milk.
but it was sabatoged by too many people. Grandparents, school people, heck..even my own husband! So, I got sick of baking all the time for nothing. I can't "make" people respect it no matter how much information I give them.
Then our pediatrician told us that his gluten was tested and he didn't need the diet. I asked someone (parent) about this, and they said it wouldn't matter, that it was a different test anyway. So, I'm stuck right now.
But, I'm also hoping that once the chelation process is over and the mercury is out of his organs in his GI tract, that his stomach will function better and processing gluten and cassien won't be a problem. If it is, then I will have to regroup and replan.
Here's what convinced me of the importance of the diet...
by in limbo
I'll try to make this brief but feel a long post in order...
While in the first trimester with my son I had 5 amalgams placed. He was born with sensory issues evident at 3 days of age. I didn't know what I was looking at at the time but now in retropsect it was obvious. He also had a HepB at birth (w/thimerasol). He was put on a GFCF diet a little over a year ago at the age of 22 mos. He has done very well on the diet. I feel it contributed greatly to his progress. But often wondered just how much.
OK fast forward...
Here we are over a year later. He is doing chelation under the supervision of Amy Holmes. Making huge strides in language and particularly pronunciation. Over the past 5 months he has gone from being able to label or identify about 25 objects to full sentences for the last 3-4 weeks. Such as "Hi! Whatcha doin?", "OK, I'll try again.", "Oh dear, what a mess." He has over the past week or two begun to use these sentences very repetitiously. I would say he uses them appropriately approximately 25% of the time. Lots of echolalia. We visited a neurologists last week that wants to use Luvox on him for the OCD/repetitive behaviors. We won't be using the Luvox because I feel that to suppress any language right now when it is only just developing would be detrimental. Besides I am not much on medicating anyway. I'll take the echolalia and repetition, I mean he was silent for so long I am not complaining. And other than the recent language developments he has very little OCD, if any.
Anyway, back to the diet...
Over the last 6-8 months my health had deteriorated to a point that I could not function. My memory had gotten so bad that I would forget therapy appointments or to pick up my daughter from school. I would forget what day of the week it was within ten minutes time. The insomnia was so bad I could survive on 3-4 hours of sleep per night for weeks on end. I had suspected mecury toxicity of myself when I began to read about chelation therapy for autistic children. I have had the symptoms since first having my amalgams placed and have even visited doctors to find out why I was having stomach problems, etc. but never associated the amalgams with the symptoms. Over the last 3 years it had got so very bad that I knew I had to do something. After reading this website
I decided that I had to give the diet a try. I have been on the diet since Valentine's day and I have not felt this good since conceiving my son. I had always complained to my husband that the pregnancy with my son had just taken so much out of me and that I couldn't seem to overcome it. Now I know it wasn't the pregnancy at all. I have read and researched and implemented a lot of the suggestions for myself. And I don't necessarily agree with everything on the above website but it is the first that I have seen that connects wheat, milk and mercury toxicity. I know the diet has helped me tremendously. I have more energy and am much more focused than before. I can tell when I have a diet infraction because I have stomach upset and usually get really irritable. I realize now just how sick I was/am. I mean for a person to go GFCF on Valentine's Day should give you some idea as to how sick I was. Plus I quit smoking same day. I am having amalgams removed and will follow through with chelation when that is completed. Already have an appointment with Dr. Cave. Because mercury toxicity interferes with absorption and processing of nutrients, vitamins and minerals I am also taking many supplements. Without them I very quickly regress back to where I was 2 months ago. This has really convinced me how dangerous this mercury issue really is and it takes an enormous amount of effort to get well again.
I don't post as much as I used to but still try to keep up with my favorite boards. But I am much more active outside of my computer than I used to be and I just feel really good. Also trying to catch up on a lot of stuff that got shoved aside when I was just too sick to take care of it. So for those wondering about where I have been...I am still here just busy, busy, busy.
Hi, it's your friend Beth from the GFCF board. I think our son's are pretty close in age. My son will be 3 in May. We have been chleating him since January this year and he is making great progress (more words and just starting to put a few together). Your message really hit home with me! I have a few questions I hope you wouldn't mind taking a few minutes to answer to help a fellow mom.
When did you first start chelating your son (what month last year?)
Is Dr Amy following the DAN chelation protocol? If not, what chages does she make? In particular how often does she dose the DMSA? Does she give lipoic acid right up front with the first cycle of chelation? Does she also give NAC?
What tests did you do to see if you were metal toxic? Did you do the hair test? How were the results?
Are you thinking about having another child? We are. If I start to chelate myself I am wondering how long it would be before we could try to conceive. If it is 2 years, forget it, beacuse I am already 38.
I will cut and paste these questions so as not to miss anything. OK?
>>When did you first start chelating your son (what month last year?<<
We are right even with you I believe. We will begin round 5 on Wednesday. We had a delay due to illness. He had the flu and couldn't keep fluids down so we postponed round 4 for a bit.
>>Is Dr Amy following the DAN chelation protocol? If not, what chages does she make? In particular how often does she dose the DMSA? Does she give lipoic acid right up front with the first cycle of chelation? Does she also give NAC?<<
I don't have a copy of the DAN protocol and I am not sure if Dr. Amy uses the exact same type of treatment as recommended in the DAN protocol. I know her recommendations vary from patient to patient according to the needs of each individual. She recommended for us to use the 3 on/11 off schedule. And we give the DMSA every 8 hours. She does not give the ALA up front. She does recommend the Chelation Aid Pro Support from Kirkman's which contains NAC but it is my understanding that if a child has not gone through some sort of detox the NAC is not well tolerated. Kirkman's did recently come out with a Chelation Aid Pro Support Product without NAC. My son has no problems with NAC but he did go through some sort of detoxification process last April. That was scary and another long story. She does recommend the GFCF diet, bethanechol, CLO and secretin. I don't know if they are mentioned specifically in the DAN protocol.
>>When did you first start chelating your son (what month last year?<<
We first saw Dr. Amy in October. Had another visit in November for test results and began to supplement shortly thereafter. We are just about ready for round 5. We also did a 10 day treatment with Vancomycin. We give Bethanechol to compliment the CLO. We have also been using Nystatin for about a year now. We do a GFCF diet without any preservatives, artificial colors or flavors and 48 hour rotation diet. Speech, OT and lots of love and fun at home. And have been doing allergy shots for almost a year too. I think that is all. But it seems that each and every single thing played an important role in his progress so far. Oh I almost forgot...lots of supplements.
>>What tests did you do to see if you were metal toxic? Did you do the hair test? How were the results?<<
I haven't done any testing at this point. I can't find anyone in my area willing to order testing and to be quite honest haven't felt the need to spend the money on testing at this point. Too broke from paying for my son's testing. I do have an appointment with Dr. Cave in May and will depend on her to order all the necessary tests as she sees fit. After what I have witnessed in my son I have every confidence in the Holmes/Cave team. I have mainly concentrated on getting well enough to "survive" until May and also getting my amalgams removed. My symptoms began within weeks of having the amalgams placed and I had never associated the two until about 8 months ago when I first started to research all of the info on autism/chelation/mercury toxicity. I was completely blown away to say the least. I have personally experienced about 75% of the Sallie Bernard comparison chart. Especially the GI issues. My son has also had severe GI problems. If I didn't know better I would have guessed him to be one of the kids in Wakefield's study. He certainly fits the mold.
>>Are you thinking about having another child?<<
No, I had my tubes tied after my son. I have a girl that is 4yo and my son will be 3yo in a few weeks. When I had my tubes tied I was convinced that I would never want for any more children. Things seemed so perfect then...but I am very happy and have no regrets. Or at least no regrets that linger longer than 5 minutes. Besides, I am 36 and hate to think of what it would be like to go through another pregnancy at this point. Oooooo, morning sickness...just the thought makes me shudder.
For more info on Dr. Amy's protocol specifically you might request to join the egroup Dramyskids. There is some really good information on the archives there and the people are most helpful. You don't necessarily have to be using Dr. Amy to join either. I think you would benefit greatly from what you would learn there. There are many in that egroup that are using physicians other than Dr. Amy. Here's the address
Thanks so much for your helpful reply. I just went to request to join Dr Amy's kids e-group. So I may see you there soon! If you e-mail me I will send you the most recent DAN chelation protocol. Then you can see the differences between it and what Dr Amy does. I would be mosst interested in hearing about your visit with Dr Cave in May. I am curious if she wil run a hair metals test on you. I would love to know her opinion on this: if one was considering having another baby and thinking they could be metal toxic, what would be the process to find out, what would they have to go through to detox, and how long before they could try to conceive? WOndering if I could e-mail her??? I wish you all the best. Please keep me posted of your and your son's progress. Sounds great so far!
Help! Post DMSA provocation urine shows high LEAD!
by Beth
We just got our son's post-DMSA provocation urine results from round 5 of chelation following the DAN subcommittee protocol, except started dosing every 4 hours starting round 3. His LEAD levels were
very high on round 5, at a level of 56 (referene range 0-15). It is the first time lead showed up at all in any significant amounts. He had a blood lead test done a few months ago an it was normal. I am
waiting a phone call back from our DAN doc and pediatrician to see what to do next. Anyone have advice or experience here?
Okay, I think I should take NBC off my list now...what do you think? I got this from the other boar
by Shirley
All,
PLEASE take the time to send NBC email about the EXCELLENT episode last night of The West Wing! It showed the senator grampa of an autistic child standing strong and fighting for the child's health, and the government listening! It was amazing and inspiring to me - I had tears in my eyes. I know it also informed a lot of the world a lot more about our fight, on the human level! Let's really encourage NBC to do more shows like this one, or even to continue the sequence of events with this grampa and child, and show what happens as this law takes effect, as part of future episodes. Here are some websites for giving them feedback:
Hmmmm, sounds like they read about Senator Burton.
by in limbo
As of today I'm still bombarding them with my votes on the ER poll. I wish I had seen the show and I wonder if the senator's fight concerned vaccinations/mercury in any way shape or form? It makes me think that they may have jumped on an "autism plot" just to shut us up on their ER poll. And to have a good response for your next email, Shirley. LOL I think I will sneak over to the "West Wing" poll and see if they are getting into the runnings for their autism show. Nevertheless, we have really blasted them on the "ER" poll.
Ladies.....chelation got you stressed out? (some funnies)
by Shirley
EXPRESSIONS FOR WOMEN ON HIGH STRESS DAYS
1. You - Off my planet
2. Not the brightest crayon in the box now, are we?
3. Well, this day was a total waste of makeup.
4. Errors have been made. Others will be blamed.
5. And your crybaby whiny-assed opinion would be...?
6. I'm not crazy, I've just been in a very bad mood for 30 years.
7. Allow me to introduce my selves.
8. Sarcasm is just one more service we offer.
9. Whatever kind of look you were going for, you missed.
10. I'm just working here until a good fast-food job opens up.
11. I'm trying to imagine you with a personality.
12. Stress is when you wake up screaming and you realize you weren't asleep.
13. I can't remember if I'm the good twin or the evil one.
14. How many times do I have to flush before you go away?
15. I just want revenge. Is that so wrong?
16. You say I'm a bitch like it's a bad thing.
17. Can I trade this job for what's behind door #2?
18. Nice perfume. Must you marinate in it?
19. Chaos, panic, and disorder-my work here is done.
20. Earth is full. Go home.
21. Is it time for your medication or mine?
22. How do I set a laser printer to stun?
23. I'm not tense, just terribly, terribly alert.
Office of Special Educ.Prog. (OSEP) has this on their front page...sounds like mercury poisoning to
by Shirley
Multiple Chemical Sensitivity
Chemical-based products are all around: in the clothes we wear, in the food we eat and in the air we breathe. It is not possible to escape exposure. Many people have become sensitized to the chemicals around them. It is estimated that as much as 15% of the population has become sensitized to common household and commercial products.
For some people the sensitization is not too serious a problem. They may have what appears to be a minor "allergy" to one or more chemicals. Other people are much more seriously affected. Such people have a condition known as Multiple Chemical Sensitivity or MCS.
What is Multiple Chemical Sensitivity?
MCS is a disorder triggered by exposures to chemicals in the environment. Individuals with MCS can have symptoms from chemical exposures at concentrations far below the levels tolerated by most people. Symptoms typically occur in more than one area in the body, such as the nervous system and the lungs. Exposure may be from the air, from food or water, or through skin contact. The symptoms may come and go with exposures, though some individuals may have delayed reactions. As MCS gets worse, reactions become more severe and increasingly chronic, often significantly affecting bodily functions.
In the early stages, repeated exposure to the substance or substances that caused the initial health effects provokes a reaction. After a time, it takes less exposure to cause symptoms. An increasing number of chemical products may trigger a reaction, including some unrelated to the initial exposure.
Most frequently, MCS affects an individual's overall physical and emotional health. It typically impairs the nervous system. It may affect the digestive and respiratory systems as well. A chemically sensitive person may also have other pre-existing health conditions. Many affected people experience a number of symptoms with each chemical exposure.
Symptoms of MCS
asthma or other breathing problems
autoimmune disorders
behavioral problems
bloating or other intestinal problems
cardiovascular irregularities
chronic exhaustion
disorientation or becoming "lost"
dizziness
dystonia (paralysis)
ear, nose and throat problems
fatigue and depression
flu-like symptoms
food allergies and intolerances
genitourinary problems
MCS may result from a single massive exposure to one or more toxic substance or repeated exposures to low doses. Some people become chemically sensitive following a toxic chemical spill at work or in their community, or after exposure to pesticides. Or, individuals may develop this condition from spending time in a poorly ventilated building, where they breathe a combination of chemicals. MCS may be brought on by a wide array of chemicals found at home, at work, in hospitals, in parks, and at school.
People Diagnosed with MCS
Studies have found that many people diagnosed with MCS were:
industrial workers
teachers, students, office and health care workers in sealed buildings
chemical accident survivors
people living near toxic waste sites
people whose air or water is highly polluted
people exposed to various chemicals in consumer products, food, and pharmaceuticals
Gulf War and Vietnam Conflict veterans
Not all people with MCS fit into these categories. For example, some have experienced a toxic exposure from flea and roach sprays, or from foam insulation (urea formaldehyde) in their home. Other people with MCS cannot readily identify situations where they have been exposed to chemical products.
People with MCS may become partially or totally disabled for several years or for life. They must make fundamental changes in lifestyle and at home. Their marriages and other relationships may end from the stress of coping with this disabling condition. They may drag themselves to work only to return home sicker and more exhausted each day. They may be forced to leave their jobs and deal with the devastating loss of income and health insurance. Some people eventually recover, but few return to complete health.
What Can Cause MCS?
No one knows for sure what causes MCS. However, in non-industrial workplaces, a number of common products and processes have been identified as contributing to the onset of MCS. Some exposures that have been linked to this condition are:
Agent Orange for Vietnam Veterans
antibiotics and other medication
carbonless paper, inks, copying machine and laser printer toner
cleaning supplies
DEET - an insect repellant which may have been a significant trigger for Gulf War Veterans
formaldehyde in new clothes, books, and other products
gas stoves
house paints
insecticides, synergists, piperonal butoxide
new building materials and furnishings
off gassing of new carpets (styrene butadiene latex in flooring adhesives and carpet backing)
pesticides and wood preservatives
second-hand tobacco smoke
toxic chemicals used in art, photography, printing, etc.
vehicle exhaust fumes
These substances contribute to indoor air pollution and are often contaminants in our air and water. Many of the chemicals which trigger MCS symptoms are known to be irritants or to be toxic to the nervous system. One especially harmful group of chemicals, known as "volatile organics," readily evaporates into the air at room temperature. Even low airborne levels of such contaminants can make ordinary people sick. The impact on health of long-term, low level exposure to most chemicals found in consumer products remains untested. The products and other chemicals that cause problems varies among affected individuals.
Commonly reported triggers include:
anesthesia
artificial colors, flavors, and preservatives in foods, drinks, and drugs
detergents and other cleaners
electromagnetic fields
fluorescent lights
perfumes and fragrances
prescribed medications
smoke from tobacco products
solvents from dry cleaning, felt pens, etc.
When our bodies are assaulted with levels of toxic chemicals that cannot be safely processed, many of us become ill. For some, the outcome could be cancer or reproductive damage. Others may become hypersensitive or develop other chronic disorders, while some people may not experience any noticeable health effects. Even when high levels of exposure occur, only a small percentage of people become chemically sensitive. The threshold of toxic injury is not the same for everyone because the ability to detoxify varies greatly from individual to individual.
Treatments
MCS can be difficult for physicians to define and diagnose. Physicians should take a complete patient history which includes environmental and occupational exposures, carefully test for familial or exposure-related tendencies like porphyria, use brain and brain function scans, and act as diligent detectives in diagnosing this condition. After the onset of MCS, a person's health generally continues to deteriorate. It may only begin to improve once the chemical sensitivity condition is uncovered. While a number of treatments may help improve the health of some patients, there is currently no "cure." In almost all cases, avoidance of exposures must be practiced to alleviate symptoms. No single test for MCS currently exists.
Avoiding the exposures which may trigger reactions is essential, and may permit dramatic improvement. Yet the large number of new and untested synthetic chemicals we encounter in our daily lives makes this extremely difficult.
Individuals affected by MCS have created "sanctuaries" relatively free from chemical emissions and electromagnetic fields in their homes. Because of the serious impact of even an accidental unavoidable exposure, people often spend as much time at home as possible and often cannot participate fully in society. As a result, they may experience intense isolation, loss of self-esteem, and depression from not being able to have an active work, family, or social life. Supportive professional and peer counseling can help if available.
MCS and the Medical Community
Many conventional allergists and other physicians claim that there is not yet sufficient evidence that MCS "exists". Research regarding the mechanisms that cause MCS has been inadequate, and unfortunately is often financed by the industries which benefit from chemical proliferation. Generally, medical doctors have not been trained to understand or seriously investigate conditions such as MCS. In fact, the vast majority of physicians receive very little training (four hours or less) in occupational and environmental medicine or in toxicology and nutrition.
Therefore, many affected individuals have to consult with a large number of specialists. People with MCS are sometimes misdiagnosed with serious degenerative diseases. Often, baffled doctors tell patients that their illness is psychosomatic...in their head. And many whose health is impaired by MCS have never heard of the condition. The lack of support from physicians, and the stress caused by having no explanation for symptoms, may contribute to a high level of anxiety and distress for people with MCS.
Conventional medicine offers very few medical treatments for MCS besides avoiding offending products. Unfortunately, medications and other conventional medical treatments offer little or no relief, and may even prompt new sets of symptoms. Treatment with anti-depressants may mask the underlying condition and can also cause other serious health problems.
Physicians who clearly recognize MCS include some occupational and environmental health specialists. A wide range of new or "alternative" treatments have been utilized by people with MCS with varying success. Some of these treatments are experimental and may include a combination of: nutritional programs, immunotherapy vaccines, food-allergy testing, detoxification regimens through exercise and saunas, chelation for heavy metals, and other healing treatments. Diagnosis may involve laboratory tests for chemical contaminants, such as total body burden of pesticides, or for porphyria, respiratory and brain function.
Unfortunately, these treatments and diagnostic workups are not often reimbursed by insurance plans. Few practitioners or medical insurance programs for people who are indigent support these alternative, yet sometimes productive approaches. Some disabled workers have won reimbursement for such care through Workers Compensation claims.
MCS Is Now Recognized as a Disability
Both the US Department of Housing and Urban Development (HUD) and the Social Security Administration (SSA) have recognized MCS as a disabling condition. People with MCS have won several Workers Compensation cases. A recent human rights lawsuit in Pennsylvania established the right of an affected person to safe living space in subsidized housing. Both the Maryland State Legislature and New Jersey State Department of Health have commissioned studies of MCS. The NJ study provides an excellent overview of medical and legal issues related to MCS.
Just as physical barriers prevent wheelchair access, chemical use can prevent entry and use of public facilities to those with MCS. The Americans with Disabilities Act (ADA) protects people with disabilities from many types of discrimination, requiring reasonable accommodation for people with disabilities. Reasonable accommodations can enable people with MCS to enjoy access to work, public facilities and other settings. Whether an individual developed MCS at work or was already sensitized prior to employment, the right to a safe workplace must be established.
Injured workers who need Workers Compensation or Social Security Disability benefits should find a physician who can diagnose MCS and who will support legitimate claims. Establishing clear documentation is critical in awarding such a claim, as well as for gaining reasonable accommodation at work or for rental housing. If your employer is discriminating, do the following:
get your condition diagnosed
if you work in a unionized workplace, consult with your union about filing a grievance or taking legal action
seek legal counsel
join a support group
For further assistance, contact a worker health resource group or support group in your area, as well as other organizations listed at the end of this fact sheet. These cases can be difficult and take a long time, but can be resolved.
Similarly, if you have been injured on the job, find an attorney experienced with chemical exposure cases in the Workers Compensation system or personal injury claims. You will not need to pay your attorney up front. Your attorney receives a percentage from the settlement if you win. It typically costs you nothing if your case is unsuccessful. To find an attorney, consult your union or one of the organizations listed below to obtain referrals. Select your attorney carefully. Remember, you should trust and feel comfortable with him or her.
Accommodating Individuals with MCS in the Workplace
These are some suggested ways to accomodate individuals with MCS at work. While not adequate in all cases, these measures will help prevent other workers from becoming similarly disabled, and contribute to the creation of a healthier work environment.
windows that open to permit fresh air to circulate
well ventilated space free of pollutants such as tobacco smoke, pesticides, toxic and fragrance-laden cleaning products, deodorizers
selection of least toxic/allergenic building furnishings, flooring and supplies
"least toxic" integrated pest management (IPM) using no sprayed or volatile pesticides in or around buildings
pre-notification prior to painting, pesticide applications, and renovations, with provisions for alternative work arrangements
education of co-workers, management, and other employers to avert stigma and harassment
scheduling which permits people with MCS to work when fewer co-workers are present, whenventilation is at its peak, or where the work environment is least problematic
allowing the option of working at home or off site
minimizing exposure to electromagnetic fields from computers, fluorescent light ballasts, andother equipment
MCS Is Preventable
People with MCS are a driving force for improved indoor air quality and for the adoption of less toxic housekeeping and building maintenance practices. Good indoor air quality and substitution of less toxic materials boost morale and productivity. A healthy workplace lowers absenteeism and injuries. Complaints about indoor air problems must be taken seriously by employers, labor unions, regulatory agencies, and health care and social service providers.
For Help and Information
National Center for Environmental Health Strategies (NCEHS), (609) 429-5358
Mary Lamielle, Director
1100 Rural Avenue
Voorhees, NJ 08043
Provides information, referral, and advocacy. Tracks scientific, legislative, legal, medical, and policy issues. Twice yearly newletter, "The Delicate Balance." Information packets.
NY Coalition for Alternative Pesticides (NYCAP), (518) 426-8246
P.O. Box 6005
Albany, NY 12206-0005
Focuses on pesticide hazards and safer alternatives. Provides information, referral, workshops, and advocacy "NYCAP News" is its 40 page quarterly newsletter. Incident reporting project.
Initiated by Grace Ziem, MD, DPH, to assist people with MCS, physicians, attorneys, and other professionals. Distributes articles and resources on prevention, diagnosis, accommodation. Contact Albert Donnay online at: donnaya@r.tk.net or visit their homepage at http://www.mcsrr.org.
The Environmental Health Network, (415) 541-5075
P.O. Box 1155
Larkspur, CA 94977
Newsletter, "The New Reactor", MCS advocacy and survival primer, "The Good Old New Reactor," by Susan Molloy, is available for $8.95 plus s/h.
Chemical Injury Information Network, (406) 457-2255
Cynthia Wilson, Director
P.O. Box 301
White Sulphur Springs, MT 59645
"Our Toxic Times: monthly newsletter
Center for Safety in the Arts, (212) 227-6220
5 Beekman Street, Suite 820
New York, NY 10038
Provides information, referral, workshops, and fact sheets on art hazards, safer substitutes and practices.
National Coalition for the Chemically Injured, (520) 536-4625
Susan Molloy, contact person in Arizona
Ste.C-501 HC-63 Box 7195
Snowflake, AZ 85937
National Office of NCCI
2400 Virginia Ave., NW
Washington, DC 10034
The Labor Institute, (212) 674-3322
853 Broadway, Room 2014
New York, NY 10012
Produced "Multiple Chemical Sensitivity: An Emerging Occupational Hazard" (28 minute video), and "Multiple Chemical Sensitivity at Work: A Training Workbook for Working People," (95 Pages). Order from APEX Press, Publication Office, P.O. Box 337, Croton-on-Hudson, NY 10952. (914) 271-6500.
Human Ecology Action League (HEAL) of Southern Arizona, (520) 577-9673
6655 E. Placita Alhaja
Tucson, AZ 85715-1251
The Dispossessed Project, (520) 636-2802
Rhonda Zwillinger
P.O. Box 402
Paulden, AZ 86334-0402
Graphically depicts the plight of people injured by toxic chemical exposure and who live with Multiple Chemical Sensitivities, through a collection of black and white photographs and biographical anecdotes. Provides a forum for people with MCS where they can accurately describe how they have lost their health and dignity.
Electrical Sensitivity Network, (520) 778-4637
Lucinda Grant, Director
P.O. Box 86302
Prescott, AZ 86302
Bi-monthly "Electrical Sensitivity News".
American Academy of Environmental Medicine, (215) 862-4544
10 E. Randolph St.
New Hope, PA 18938
Professional association of environmental and occupational physicians. Provides regional listings of member doctors.
American Indian Environmental Illness Foundation, (360) 665-3913
Terri Hansen, Director
P.O. Box 1039
Long Beach, WA 98631
GOVERNMENT AGENCIES
US Social Security Administration...check your phone book under US Government Offices, Health and Human Services. For general information, call 1-800-772-1213.
US Department of Housing and Urban Development (HUD), Office of Fair Housing and Equal Opportunity,(602) 379-4461. Request the MCS Information Packet, which includes citations and descriptions of helpful recent legal decisions regarding safe housing.
Additional Reading
Staying Well in a Toxic World: Understanding Environmental Illness, Multiple Chemical Sensitivities, Chemical Injuries, and Sick Building Syndrome, by Lynn Lawson (1993). $18.95
P.O. Box 1732, Evanston, IL 60201.
Neurobiology of MCS. An interview by Cindy Duehring with Donald Dudley, M.D., Neuroscientist and President of the Washington Institute of Neurosciences in Gig Harbor, Washington. April 1996 Issue of "Our Toxic Times." Chemical Injury Information Network, P.O. Box 301, White Sulphur Springs, MT 59645.
*** Special thanks to Susan Molloy for her assistance in the creation of this fact sheet.
*** Portions of this fact sheet were reprinted with permission of the Multiple Chemical Sensitivity in the
Workplace Task Force, NY Coalition for Alternatives to Pesticides, 353 Hamilton Street, Albany, NY 12210, (518) 426-8246.
Hello everyone,
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It is Transfer Factor. It optimizes the immune system, increases NK cells, supports chelation.
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~~~~~~~~~~~~~~~~~~~Lindy~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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Plus I quit smoking same day. I am having amalgams removed and will follow through with chelation when that is completed. Already have an appointment with Dr. Cave. Because mercury toxicity interferes with absorption and processing of nutrients, vitamins and minerals I am also taking many supplements. Without them I very quickly regress back to where I was 2 months ago. This has really convinced me how dangerous this mercury issue really is and it takes an enormous amount of effort to get well again. 