Claire

Daniel, No one knows these answers. It is like autism, some cases may be genetic, some triggered by an environmental insult. I personally think a TS diagnosis can sometimes damage for one reason: It makes people think their is nothing they can do to change it. Plenty here might have had a TS diagnosis and lost in through tic trigger avoidance and treatments. Chemar's son is proof that a TS diagnosis doesn't stop you from marvelous improvements. I think it is a mistake to delay treatment. If there are underlying issues, the sooner the better. You are not drugging your kid. You are testing for immune issues--if he doesn't have them, no harm. If he does, they need treatment anyway and there is an awesome chance of success. I feel like you are spinning a bit Daniel. I pray that you can focus that energy instead on proactively helping him. It will help him more, and I believe it will help your own cycling/stress to know you are doing something. But you need a doctor--Pfeiffer or DAN or whatever, you need to get started. Claire

Daniel, Very informative link. It is interesting the way the mainstream medical community takes one tiny bit of this info and presents it as their own. Also, note that it is only 'predictive' (vs treatable). Finally note the clear statement that the vaccine correlation is 'largely rejected' yet acknowledgement that some environmental insult might trigger it. What a tap dance not to scare the mainstream off vaccines with mercury/thimerisol. But nonetheless, now I get a picture of how the mainstream will someday 'cure' many cases of autism By the way, you posted on treating earlier rather than later. Absolutely the autism immune treatments are more effective (and faster results) earlier, and my working assumption is the same applies here. No evidence, but why take the chance? Claire

Kim, I don't know Labcorp tests. My knowledge is limited here. THis is what I know: Urine is the same test that Pfeiffer and the DAN doctor's do. I just give them credit for knowing what they are doing, plus it gives a more consistent basis of comparison. Much less invasive for the child too. http://www.directlabs.com/PDFfiles/T97dysbiosisSR.pdf This link shows they measure arabinol--a yeast metabolite in the urine. My DAN doctor says that Nystatin for yeast doesn't even enter the bloodstream, so I don't see how a bloodtest for Candida works, but I am not a doctor. I know he discounted our blood Candida test for IgE reactions as meaningless in measure yeast. I know the Great Plains Urine tests don't test for yeast in the bladder, the metabolites from yeast in the gut are excreted in the urine. -again I have no idea what Labcorp does, but I know this about Great Plains arabinol test which a number of us used. I think the Metametrix disbiosis test is the same at Great Plains, but you should call Metametrix to ask. The Great Plains test is the gold standard for yeast. Sorry I can't help more, really. We had this conversation relative to Immunolabs--I just don't know the blood tests. Gotta run, crazy day, good luck. Claire

Kim, wait...I think the Candida test they have is for allergies to it... In any case, it is quite different from the others tests we are all taking. I would look at their dysbiosis test for under $200. Plus there is a glutathione test for $40---the two combined give you the key things I liked from Great Plains OAT test. Claire

Hi Kim, Dr. Walsh sees the world from biochemical imbalances. This isn't that different from DAN doctor's I approach it, but a bit in that he has only certain biochemical issues that his clinic looks at--not the whole picture for the tics group. Basically, I agree with him that zinc/copper ratios (or a zinc deficiency) is key. Chemar's son improved from alternative medicine. Even TS kids get improvement with correcting immune issues IF they have them. Basically this is my view: test for the immune issues and correct them. Dr. Walsh's tests are NOT as comprehensive as we went through, so he can only comment on immune issues that he tested for and treated. To me, this is why his success rate is lower. For example, they don't do food sensitivity tests and we know that is a biggie. Yeast tests aren't standard for them. If immune issues are there, they need treatment. It sounds to me that the good news here is that he saw tics improve when a zinc deficiency was corrected. Claire

Sorry Daniel, I had assumed that you have been reading the posts on Pfeiffer. Those of us who have been to Pfeiffer know that they claim only 15% success rate in treating TS. Dr. Walsh at his seminar I attended said that this is higher for tic syndromes. If you will track some of the posts, what we are finding on this board is that tic syndromes have many of the same underlying immune issues as autism. Thus testing for and treating those same immune issues is a help. Caz posted that certain members of the DAN doctor community is starting to investigate tics. I personally think that a DAN doctor who is really up to date with DAN and sees tics as related to these issues is ideal, plus Pfeiffer -they focus on different elements. However, you were concerned with food restrictions and Pfeiffer's MT promotion has potential to treat this. We all made appointments there, and it is too early to see results, so we can't say for sure, but this has promise. So ignore the receptionist/nurse who tells you this. Say, I know this, but I would still like to progress (assuming you do). They will have you fill a health history and proceed. Though it may be too late for the outreach in your area--I think it was this week. Claire

Such a shame... I am just so disappointed at the deceptive practices. I wonder if the new mercury levels are possible to find out? One article said it was fear of lawsuits that kept anyone from proclaiming a correlation. http://www.whale.to/a/mercury7.html "Many manufacturers voluntarily began producing supposed "mercury free" vaccines in 1999. Some product inserts currently claim that a "trace" amount of mercury still exists in the final product but that the amount has been greatly reduced. Others claim to be producing completely mercury free products. During an investigation into the mercury issue, HAPI learned that Thimerosal, a 50% mercury compound, is still being used to produce most vaccines and that the manufacturers are simply "filtering it out" of the final product. However, according to Boyd Haley, PhD, Chemistry Department Chair, University of Kentucky, mercury binds to the antigenic protein in the vaccine and cannot be completely, 100% filtered out. All four vaccine vials tested contained mercury despite manufacturer claims that two of the vials were completely mercury free. All four vials also contained aluminum, one nine times more than the other three, which tremendously enhances the toxicity of mercury causing neuronal death in the brain. " more.... Claire

efgh, I am not an active member there...actually I posted twice and never got any answers (unlike the enzymes board), so I think my posting a 3rd would be an annoyance to them. After closer look, the board is mostly one person (Andy, not our Andy) answering a ton of questions about chelation, so it may not be the best place after all. And the enzymes board really is about enzymes mostly. (I am trying to cut back on posting anyway, and not start a new board) Sorry I can't help you further...! Do let us know what your doctor says about its presence in the vaccine he gives. I think you need a lot number--maybe ask our Andy...someone here posted a way to check for thimerisol. Claire

Just posted on the enzyme board: -------------------- The calls to the White House were successful but now we need everyone to stop!!!! Things are moving in a much more positive direction now. We will keep you all updated. Please hold your calls and faxes to the White House (especially to Andrew Card's office). Please do not call or fax Andrew Card's office. If you are particularly motivated and want to put those dialing fingers to work, we suggest that you spend this week calling your Congressman and Senators and telling them what you think about Congressman Dave Weldon's bill and Senator Bill Frist's bill. Thank you to everyone in the community who participated in the call in on Thursday and Friday. Your help was amazing! Each one of you made an incredible impact! The Power of 1.5 is out there and when targeted and focused, it makes a difference, just like light...you can diffuse it and fill up an entire room, or focus it into a laser beam and cut through steel. If everything starts heading south, we will let you know to open those phone lines again. Have a great weekend! Shelley Reynolds President, Unlocking Autism

efgh, I assume that you saw my post to your earlier thread on the info from the yahoo message board? Not all DT vaccines have mercury/thimerisol in them, but my point in posting that is that it appears that some do. You should check with your child's doctor not just on the vaccine vial itself (apparently they can be deceptive) but on the records that come with the vials. My understanding is that Chiron is one company that removed all mercury --but I don't know if they do this vaccine, though I know that they do the flu one. I would post your question on the mercury-autism yahoo board. They are most educated about mercury in vaccines, and vaccine risks. Maybe there are some formal guidelines, e.g. splitting the 2 vaccines, how you verify no mercury, how you verify no casein.... http://health.groups.yahoo.com/group/Autism-Mercury/ But after this, I really think you need to get a DAN/EM doctor's guidance on whether your own child's immune system can tolerate this now or whether you need to reassess in the timing of giving this to your child. It may for example depend on where you live for Diptheria. Professional guidance is important. There is no reason in the world to need to give it to him with thimerisol though-- if your doctor has only one source and isn't willing to get another one, you can just call around to find a doctor whose vaccine comes from a different source. Also, I would split them if possible. -------------- I have this very strong feeling that Prudence/Billy O/Lanie/TSNW are 'related', given the underlying tone and coincidence of appearance in the last week. How many newcomers arrive to chide us in the last year (zero) vs the last week? With Braintalk down right now, the normal 'venting' spot is gone. I personally think that the newcomer(s) should need to register, so that there is greater honesty in their communication versus their trying to pretend that multiple people are saying their own message over and over. This certainly hurts their credibility even further, though it might work on a more fragmented board than we have. Of course they can always register with multiple email addresses, but I think it would reduce occurances of posting under multiple names. Please note that I don't ever directly communicate to the person(s?)--I used to do this on Braintalk and it was a black hole--our time is better spent on our family or helping people here. It would be great to have required registration and even an ignore feature. But I know that Sheila Rogers is doing this without any compensation and trying to get her book out at the same time, so we may need to just manage this ourselves--we just can't burden her too much. Claire

Hi Kim, I would call Doctor's Data and ask re length of hair--it does have to be a certain length. Coincidentally, my son got his hair trimmed right before the test and initially said it was time for a buzz cut. I told him he had to wait due to the Pfeiffer visit (since then he changed his mind). Yeast requires no supplement change. I assume you aren't giving antifungals (grapeseed extract etc..). If so, I might go 48 hours without them. Claire

Here is a yahoo site called Autism Mercury, that someone on the enzyme board pointed me to. Apparently, somewhere there is another one where they try to interpret lab results!! http://health.groups.yahoo.com/group/Autism-Mercury/ It says their purpose here (notice no mention of tic syndromes... To discuss current issues related to the increasing incidence of autism the potential link between excessive mercury exposure via thimerosal in infant vaccines. Topics include: mercury detoxification ("chelation"), mercury-related issues/news, and vaccination-related issues/news. Most members are parents of children with autism, aspergers, ADD, ADHD, PDD, PDD-NOS, SID, oppositional defiance disorder, apraxia, speech disorders, and/or other related symptoms. There are many labels: you are welcome regardless of particular label(s). In addition to mercury, we also discuss other heavy metals (for example: arsenic, antimony, lead). Many parents here are in the process of chelation, with a child. This process is discussed in detail. Also welcome: mercury poisoned adults; other disorders/issues related to mercury poisoning; other biomedical treatments for ASD. Claire ps If you learn something informative, I hope you post the link back here! I will scan it too of course.

bumped for newcomers. Claire

Falon There is help for you. But the active community for tic treatments is on this other forum on this site. People with PANDAS and no PANDAS, most of the treatments are the same, and the focus is alternative treatments (no prescription drugs). We have had great success. You can repost your post there...plus we have lots of threads. I will bump a newcomer thread for you right now. http://www.latitudes.org/forums/index.php?showforum=1 Good luck! Claire

I think most here know about them, but for newcomers... http://www.enzymestuff.com/epsomsalts.htm I feel so sleepy after taking one, I love it. Right now it is a weekend treat though! Claire

Kim, This deserves a highlighted thread. Hmmm...I read the enzymes board too and didn't see this, thanks for catching it!! I just called www.directlabs.com. They somewhat 'provide' a doctor's signature and then order the tests for you! Not just the hair test (for which they actually use Doctor's data--the same place Pfeiffer uses), but all sorts of other tests. This is AWESOME for people who can't find a doctor willing to run the tests. You know I am always going to say 'don't actually treat without a doctor's signature'. However, at the very least, if you find some of these issues, you can make a better financial decision to then make the trip or whatever to a good alternative doctor to pursue this http://www.directlabs.com/testtypes.php They don't do the labcorp.com zinc/copper test, bummer, but they do a TON of tests. Hair test for metals doctor's data Urine test for metals OAT test (yeast) Metametrix--looks like it covers yeast and some element of glutathione, though different from Great Plains, Metametrix is supposed to be a good lab. Food allergies (delayed) I would have assumed there was a mark-up because they sent you the kit, have their doctor sign the form and order it for you. Some of the pricing looks in-line and some are definitely a premium. (food allergy test had a premium, Dr. Data looked in line) I know that for insurance purposes, you need a doctor's signature, and they said this is a normal MD. Wow, this is great news. I know that opponents would say that it risks people self-treating. I do think that is a risk. But I look at it as potentially a way to get some indicators to justify the expense of a specialist. Thanks again Kim, you probably just helped a lot of people. Also, yes, for that price I would do the hair test. Completely harmless and it could give you the info you are looking for. Claire

One possibility: Zinc is depleted during growth spurts. Zinc is an important part of the nutritional/immune balance. If you are not doing so, you might want to ensure that he is getting his daily allowance of zinc. Also, www.labcorp.com does a blood test for zinc deficiency among other things. Zinc deficiencies seem to be common in this group. Claire

Daniel, Dara posted that Pfeiffer is having an outreach clinic somewhere in New Jersey in early May--next week I think. They only do the outreaches every 6 months. I know from experience is is $1200. (Pfeiffer is based in Illiniois). Blue Shield and AETNA appear to mostly cover this--you can call and ask. They aren't perfect, you might want to wait to see how Dara does with Pfeiffer and the DAN doctor she is also seeing this month. Pfeiffer just now is moving to nurse practitioners instead of doctors for the children (I just found out this week). I am not big on that part. They test for methylation issues, pyroluria, zinc/copper balances. If you have a known yeast issue, you can ask for help there also, and/or further testing. They do a hair test only for metals, which is okay but can give false negatives. I think it can be a productive part of the process, just not complete. Here is there number for questions you have. They will likely tell you they don't have much luck with TS/tics though. Even so, a few of us here go and still find they uncover issues for us that need treating. As I said, just part of the process. (630) 505-0300 , 6 Claire

GL&L, Right now I would look at both TS and ASD disorders as neurological symptoms of immune issues. The same immune issues may cause either one. I would personally not be concerned about the blinking and humming 'leading' to autism someday. I have yet to read a story of autism that started with "my child started with tics and progressed to autism". We all have enough to worry about without adding that one to our list. I would be more concerned that my child might ultimately have the issues more commonly associated with Tics/TS, such OCD and ADHD, and some of the moodiness people have commented on. Those have their own set of challenges for the child that go well beyond the tics. Given most DAN doctors already put ADHD on the ASD spectrum, I wonder whether children who have ADHD with tics are even more likely than others to have an immune origin, but I am only wondering. Having read that thimerisol is still used in vaccines, I would make 1000% (!) percent sure that no future vaccines had thimerisol in them, and split the MMR. And I would check with your doctor for the vaccines your 3 year old had. You can get the lot number of the vaccine and check it out on the internet (someone here, maybe Andy?, posted a link). And I personally think that over time we may find that children of this era (thimerisol in vaccines) with tics for more than a few months time should have antioxidant/metals testing (beyond a hair test). I didn't used to think this. But if the metals are there, they can build and we can all continue to jump through hoops indefinitely with diet and trigger avoidance or we can try to get rid of the poison. If there is no issue there, I suspect bringing the child's system back in balance would be much easier. But time will tell. Claire

Caz, That is soooo great to hear! It isn't even a matter of whether or not TS/tics/OCD/ADHD are on the spectrum or not that is so exciting about this... ...what matters is that IF these doctors now expand their sights to include TS/tic/OCD etc... then the knowledge base on treating these disorders from an immune standpoint will be tremendously expanded and discussed in the only current medical group that seems to be formally looking at immune-induced neurological issues. That has got to be the best news I have heard in a long time. I personally think this gives it much more potential to be far a reaching and practical diagnostic and treatment protocol for tic syndromes someday. Thanks for sharing! Claire ps I like Andy's 'label' of 'mercury-poisoning' (for many of us anyway). This is how I communicate my son's issues--seems to get the most acceptance without skepticism or stigma.

Marie, What did they say? For me they just asked my name and state. Someone on the enzyme board said the person who answered tried to manipulate her statement against thimerisol into one that was 'for more vaccines'. Too weird, too weird...politics at its finest! Claire

From the enzyme board...shocking to me, they still have mercury in some childhood vaccines!! I guess the manufacturers are lingering in removing them... I made the phone call to 202-456-6798 and just said: "Please tell President Bush that I would like him to ensure that thimerisol is immediately removed from children's vaccines". They took my name and state--it took less than one minute. Claire -------------------- Subject: Phone-a-thon Bush Refused to Remove Mercury Today is the day to ring the phones off the hooks in Washington! Lets make a statement about what has happen to our children. They can not deny if we come together as one! Thank you in advance. Lynn Forward attachment follows below. Bush Refuses to Protect Pregnant Mothers & Children from Mercury-based Vaccines If you received this e mail by error, click REPLY, add REMOVE and you will no longer receive Unlocking Autism posts. April 27, 2005 In September of 2004, President George W. Bush stated while on the campaign trail that he would "support the removal of thimerosal from vaccines on the childhood national vaccine schedule." Today, April 27, 2005, in several conversations with White House Counsel on Health Policy, Unlocking Autism got more clarification on what that means. The semantics mean that The White House stated that President Bush thinks that mercury should absolutely be removed from vaccines, inherently indicating that his administration does find it to be a harmful substance, and while he has the full authority to remove it from the shelves today, he refuses to act. He wants to continue to allow the pharmaceutical companies the opportunity to continue to voluntarily phase it out of vaccines. The White House counsel further suggested that we be patient and give the pharmaceutical companies the time to accomplish this on their own. So how long does that take? How long exactly did it take for Firestone to recall their tires? How long did it take for Tylenol to pull their products off the shelves and present safer packaging? Six years...at a minimum that the government has known of the mercury problem...and it is still out there being "voluntarily" injected into kids because not all of it has been "voluntarily" removed. In February of 2005, Unlocking Autism addressed a letter to President Bush requesting that he issue an Executive Order banning the use of mercury in vaccines for all children under the age of 18 and pregnant women. The only shots with more than a trace amount of mercury in them are some of the Flu vaccines and a version of the DT vaccine but both of those contain 25 mcg of mercury, which far exceed EPA safety limits for small children. Based on several conversations with White House legal counsel today, the President does have the authority to issue such a ban and immediately recall the mercury based vaccines on the shelves and in production, but he refuses to do so. The White House counsel also stated that while Bush supports the removal of mercury from vaccines in the childhood national vaccine schedule, he does not think that any immediate action is necessary even though it may take 3 to 4 more years to phase mercury out of those shots remaining on the schedule today. Nor does the President find it necessary to ban the use of mercury based vaccines for pregnant women because, after all, they are adults, not children and therefore, fall outside of his statement that he supports the removal of mercury from the childhood vaccine schedule. The White House asked us to consider all that they have accomplished in reducing mercury in vaccines (yes...they said this.) They referred me to the following three documents as proof of what they have done thus far for those of you concerned about this issue: NIH - http://www.hhs.gov/asl/testify/t041005d.html CDC - http://www.hhs.gov/asl/testify/t041005c.html FDA - http://www.hhs.gov/asl/testify/t041005e.html I told them that credit doesn't go to anyone who sits by and allows bolus doses of mercury to be knowingly injected into children until the pharmaceutical companies "voluntarily" take it out. Credit goes to the person with the intestinal fortitude to put a stop to it. It was made clear to us that the removal of mercury from flu vaccine and the DT vaccine would cause undue hardships on the pharmaceutical companies who do not have the facilities in place to manufacture mercury free vaccines. It takes 3-4 years to build these new facilities. (Who is doing math with us here? 1999+4=2003? Is this..oh..it is...2005?) They would have to really step up the process (even though they haven't even started manufacturing flu vaccine for this flu season.) Undue Hardships? That is an interesting choice of words to tell the mother of a vaccine injured child. I asked for the White House counsel to put in writing that President Bush does not support the immediate removal of mercury from childhood vaccines and that while they realize that millions of children will be needlessly exposed to it over the next several years, they are willing to allow that to happen. They said that they would not put it in writing. Without a ban, it is our opinion that President Bush is passively making that statement regardless of whether or not he officially puts it in writing. We asked that President Bush publicly support legislation proposed by Congressman Dave Weldon and make a statement to that effect on the House floor to encourage the expediency of the bill. This request is under review and we did not receive a final answer on their position today. The White House did indicate that President Bush may reconsider the immediate removal of mercury from all vaccines in the future. We were told that it was not his final answer but that those concerned with the removal of mercury should just be patient and wait. We don't really feel like sitting and being patient. We don't think that you should either. If you feel strongly about this and think maybe President Bush should reconsider, we recommend that you not only call the White House comment line, but that you contact Chief of Staff Andrew Card's office directly at 202-456-6798. We think that you should call on Thursday, April 28th and every day after that if you feel like it. Or better yet, call, then fax President Bush via Andrew Card's office at 202-456-1907. Regardless of the plausibility of an autism/mercury connection, we believe knowingly and purposefully exposing children, and fetuses, to mercury is stupid. There really isn't another word. It is stupid. Mercury is toxic in every other capacity on the face of the earth and yet, the US Government would have you believe that as soon as it slips beyond the epidermis of a child, it becomes harmless. We told them at 3pm today to start hiring temps to help answer the phones. Lynn Notgrass sounded the alarm, gave all of us a time and a date and inadvertently gave them a deadline. We think she is right. Pick up the phone. Write that fax and show the White House what millions of people can do when their patience runs out after six years. Shelley H. Reynolds President, Unlocking Autism www.unlockingautism.org P.S. If you are a George Bush fan or a staunch republican and think that this letter has intonations of a "liberal, left wing" slant, let me clear this up for you before you send me an email. My personal party preference has no bearing on the way this notice was written. If a democrat was in the White House and the same thing had happened as happened today, I would have sent the exact same letter with someone else's name. The only reason it is directed at George Bush is because, well, he is wearing the shoes of the Executive Office at this point in time. Neither party is in the clear. The Clinton Administration was, to use their own terminology, "asleep at the switch." The Bush Administration was on notice before they set foot in the White House and they have been awake and driving the bus. I don't personally know which legacy is worse.

deleted by Claire

I called Elisaact and they said Blue Cross covered them. AETNA does not, as we recently found out. One Health Plan does. Don't know about having a prior dx. If you are employed, they have to cover you. If you are self-employed and have a two person business (e.g. husband and wife) they have to cover you. Not so for just your average Joe getting insurance. So I would check it out (call an insurance rep to ask). If so, there is a good reason not to get a Dx from a neurologist, wouldn't that be a shame? Tics/TS don't strike me as a high cost thing for most, this board excluded--we aren't the mainstream. Claire

Really Kim? That surprises me because I read a study that said that monkeys given milk retained the mercury in their systems longer. I respect Karen, so I am sure she has a basis for this, I would be interested to hear where she got that. My son still gets casein in cheese almost daily anyway, and we do the enzymes for that. Someday I will post all my questions. I feel that I need a dedicated weekend someday to read through that site. I only get 24K through my phone line, so it is a long loading process to read the archives. Claire