kim

Hi New2, Welcome! I think the general concensus would be "yes" in many many cases epsom salts seem to help with relaxation at the very least. We have had a couple of people say that it appeared to make tics worse. One article that's posted somewhere within this thread (sorry, i can't pin it down a little better) says if you get a negative reaction, cut back on the amt. used and work up slowly. There is a lot of info on regarding the "sulfur" part of the epsom salt bath. For magnesium info, you might want to use the search feature. I'm sure you'll pull up a ton of threads. http://www.latitudes.org/forums/index.php?...c=3208&st=0

That all sounds basically good Andy. A far cry from the original "diagnostic" advice you were given. Andy, Carolyn has posted about her reduced food sensitivities since chelation. I'm wondering if you see any difference in that area during chelation as opposed to off times? Is detox the answer, in your opinion to that problem? I know you don't read all of the time, so if you don't respond I'll pm you. I know we have other sugar craver/limited eaters here, so I wanted to post this, so others could maybe benefit too. I'm sure you're going to say gut healing has helped, but I guess what I'm getting at is, do you think the sulfur properties of the chelating agent (I'm thinking largely of DMSO) helps in itself? Now reading that back, I think I'm confusing DMSA and DMSO. Guess I better figure out what I'm talking about here

bmom, A couple of thoughts. A chiropractor can order tests thru Great Plains. You could probably get a stool test for bacteria/fungal levels (good and bad) and fatty acids done fairly easily. Claires testing thread, which I think is "pinned" now has some good info on getting blood testing ordered, which can be done in a lot of states with their (the labs) slip only. Our state would not accept it. It had to be ordered by someone in their/our system, even thou I was paying out of pocket. The labs would not do the draw that was needed. The Dr. that you mentioned having an appt. with is very highly regarded from my understanding but I do think for autoimmune issues, you may end up with Actos recommendation as another family here did? Maybe she will pop in and confirm that i'm not confusing an issue. ((((Michelle)))) I guess a lot of this depends on how much time you're willing to track down the results and how comfortable you are acting on the test results, without a physician. With my guys, we had a lot of luck with Bonnie's vitamins, i wasn't afraid of omega's, comfortable with digestive enzymes etc. With my youngest son, and limited diet, there were some things like B12 (we started with a mixed, then went to a sublingual methyl B12) that were pretty obvious to me, that he would be lacking. It's a difficult decision how far to take these things bmom. I wanted to add again, when I said (on another thread if you read that) some of these Dr.s aren't as informed as you would think, I was mainly talking about the ones that sort of dabble in alternatives. Maybe have one test like a stool test, that they have found beneficial info from for some of their patients. There seem to be a lot of thoses out there.

Carolyn, i guess i remember that now. I think my my long term memory is a little better than short term Will you take a look at the site that you posted, whenever you get a chance and see what you think of the MSM? http://www.advance-health.com/nacetylcysteine.html. Everything that i have read so far seems very safe and i loved the fact that it appears to help with reflux. It sure seems to me that the reflux and ticcy symptoms go hand in hand around here. I have to say (again) tics flairs for the most part are very few and far btwn currently, but that doesn't help much when one hits. I don't know if Warings article is posted here or not. I'm going to include it in case it isn't. It is really worth reading in addition to the article that has been posted here a couple of times. http://64.233.167.104/search?q=cache:8RCav...;cd=7&gl=us There is some contradictory info about the effectiveness of epsom salts. Also, for people that have the sensitivity to sulfur would want to go very slowly with this supp (msm) i guess. EDIT: I went back thru this thread Carolyn and saw where you said that Daniel was given 3 doses of DT. I'm under the impression that all DT, which is normally used for boosters contains 25 mcg of thimerosal. We you given the impression that this was a thimerosal free vaccine? also Edited out some quotes until i could find the reference articles

Juls, I was thinking along the lines of myrose, but wasn't sure if you were using IP6 for a specific reason. I have read where some have used IP6 to lower calcium levels. If it's combined with calcium, i believe it is sometimes used for the potential cancer prevention?

Juls, I'm very curious why you chose the IP6? As CP said, Thanks for sharing!

Carolyn N. Thought you might want to check this out This section has a heading something like... supplements to be used with caution. A lack of testing (I'm thinking of CBS and MTHFR mutations amongst others) along with not knowing metal status makes using some of these supplements tricky. The chance of mobilizing metals is something that scares me. The yeast info is something to keep in mind too. Some of these Doc's that we pay a lot of money to, I don't think are all that informed, so I think it pays to look for any and all info on some of these things, before supplementing (with or without their advice). If you have someone greatly "up" on all of this and testing, this wouldn't apply as much I guess. However, I have watched (read) of parents who have explained some very complicated concepts to their DAN Dr.s and then been furious for the size of the bill they received! These are emerging (and changing as it goes) concepts. I have really come to realize that these Dr.s are just people (mainstream or alternative) I don't want to make the mistake (again) of thinking because someone has initials behind their name that their advice or "ok" on something is the final word. You know that I'm looking for the safest ways to deal with problems with sulfur pathways too. Just wanted to share this with you http://www.eas.asu.edu/~autism/DANConsensusReport.htm Alpha-Lipoic acid: A dithiol fatty acid, alpha-lipoic acid is a native chelating agent but is also a powerful anti-oxidant. It has been extensively used in Germany to treat diabetic neuropathy with excellent results[31]. Its anti-oxidant effects may be particularly helpful in autistic children, since many of them show clear evidence of anti-oxidant depletion. Alpha-lipoic acid is a natural product of human cells and so has minimal toxicity; doses of up to 25 mg/kg/day given over more than three years have been studied in adults with no detectable toxicity[32]. There is a theoretical concern that alpha-lipoic acid may bind to DMSA and reduce the availability of both, but this has not been seen clinically. Another concern is that alpha-lipoic acid reduces the removal of methyl-mercury by glutathione, which is a reason why it should be given with DMSA. There is also evidence that alpha-lipoic acid reduces copper excretion[33]. Since DMSA increases copper excretion[34] (it has been used to treat the copper intoxication of Wilson’s disease[35]), this should not be a problem if alpha-lipoic acid is used with DMSA. A serious concern with alpha-lipoic acid it is readily consumed by yeast, and its usage can often exacerbate intestinal yeast overgrowth. The risk of yeast overgrowth may be decreased by lowering the dose or by transdermal administration, although absorption by transdermal forms has not yet been established. A prior history of yeast infections is a contra-indication for use of alpha lipoic acid. Cysteine/cystine: As sulfur-containing amino acids (cystine is the dimer of cysteine), both can bind to and mobilize mercury. Like alpha-lipoic acid, cysteine and cystine may worsen mercury intoxication by spreading it to other tissues. Furthermore, cysteine and cystine are excellent culture media for the Candida genus of yeast and can promote or worsen intestinal candidiasis. N-Acetyl-L-Cysteine (NAC): NAC should not be used initially or by itself with anyone suspected of having a significant body burden of mercury. Like alpha-lipoic acid, cysteine and cystine, NAC can bind with mercury and carry it across cell membranes. NAC is also a good culture medium for yeast, like its parent molecule, cysteine. Since many autistic children also have high cysteine levels, giving them NAC will only exacerbate this problem. NAC is often recommended because it can rapidly increase intracellular glutathione levels[36],[37]. For that reason, it can be tremendously useful in treating the antioxidant deficiencies seen in so many autistic children. NAC should be used either in conjunction with DMSA or after mercury detoxification is well under way. In addition, NAC should be used with extreme caution in children with elevated cysteine levels. NAC should not be used orally, because it is a food for yeast and can frequently cause or exacerbate gastrointestinal problems. It can be given transdermally or nasally.

Andy, It's really nice to see you here again. I didn't post anything, because I wanted to ask you a million questions and I'm off in too many directions as it is. The most important thing, I would love to know how your son is doing! The 2nd thing, I remember you commented once (I think) that your son ticced when he ate "anything." I could relate to that remark with my youngest son at the time. So, I'm wondering if you have been following the Hannah Poling case and the whole mito disorder topic? On a different topic, I'm looking at MSM for a supplement right now, and I'm wondering if the sheer sulfur supplied during chelation is helping kids as much as moving metals?

Jessica, Did you find enough information on the MTHFR mutation? Did the new neuro have any helpful idea's for your son? I hope it went well. It's so sad how these kids have real health issues, and nothing but drugs are offered. It took sooo many children to become sick, before anyone wanted to even guess what was happening. I'm really hopeful that insurance covered Dr.s will get involved in some of this testing and treatment soon. I know the most recent family Dr. that we have, is much more respectful and open to listening and testing than anyone in the past. He's younger than any GP Dr. we've seen before so maybe that has something to do with it. These are some articles with info on MTHFR The first one has some good links, the 2nd is pretty technical if you're not familar with all of these words, but does show how all of these things all work in a cycle and gives supplement info. There is also a forum that deals specifically with the genetic mutations that appear to be often involved. If you want the link for that site, just ask. http://ghr.nlm.nih.gov/gene=mthfr Methionine Transsulfuration Pathway http://www.autismwebsite.com/ari/dan/jilljames.htm Migrain and MTHFR mutation http://www.ncbi.nlm.nih.gov/pubmed/1792765...Pubmed_RVDocSum

bmom, since this is a newer study, you might want to spend a little time looking at this (or copy and take to Dr) http://www.annalsnyas.org/cgi/content/abstract/1109/1/473 and If you can relate any of this to the strep/PANDAS studies, maybe it would provide some clues. I don't know if there is anything helpful here or not? If you stare at these words longs enough they start to make sense, honest http://www.ncbi.nlm.nih.gov/pubmed/18219588? ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1 Histidine-Rich Glycoprotein Modulation of Immune/Autoimmune, Vascular, and Coagulation Systems http://www.nature.com/icb/journal/v83/n2/abs/icb200514a.html immune complex clearance and phagocytosis of apoptotic cells. http://www.ihop-net.org/UniPub/iHOP/pm/104...p;pmid=15225155 Apolipoprotein H (APOH), also known as beta2-glycoprotein I, is a major autoantigen for the production of antiphospholipid antibodies (APA) in autoimmune diseases. APA is also recognized by a cryptic epitope generated following the interaction of APOH with anionic phospholipids (PL).

bmom, I don't want to mess up your PANDAS thread and go off in a different direction, but I have to ask if you discussed the V Leiden/antiphospholipids connection with the Dr. that you saw? It just really seems to me that that should be explored. Maybe i'm totally wrong here but seeing those things connected with movement disorders just seems too important to be totally overlooked. Last night I thought it was you that had the V leiden and your sister antiphos. Then I realized it was the other way around. Anyway, if you really look into those disorders, you may be able to come up with important info to take to the new Dr. In one article it said that antiphos and V leiden are sometimes found in the same families. One is considered autoimmune and one isn't from my understanding (V Leiden is not) but as usual, it's kind of complicated, so you're in a good position to just take any questions to your Dr. appt. I thought the article that mentioned a possible connection to the MTHFR gene was really interesting! A few of the articles are mentioning these conditions in regards to movement disorders. A couple, I was looking for problems assoc. with illness in regards to these conditions. I don't know if you saw this post on another thread? http://www.md-journal.com/pt/re/medicine/a...#33;8091!-1 Chorea in the Antiphospholipid Syndrome: Clinical, Radiologic, and Immunologic Characteristics of 50 Patients from Our Clinics and the Recent Literature http://www.annalsnyas.org/cgi/content/abstract/1109/1/473 and . http://books.google.com/books?id=Atuv8-rVX...36PLg&hl=en http://www.ncbi.nlm.nih.gov/pubmed/10373212?dopt=Abstract and there have been recent reports of positive association with the Leiden variant of factor V and the thermolabile variant of methylenetetrahydrofolate reductase. Some of this might be useless, they were just some things that I had copied when trying find any connections. http://www.emedicine.com/neuro/topic61.htm Chorea Gravidarum http://pediatrics.aappublications.org/cgi/...ract/102/5/1208 Varicella Purpura Fulminans Associated With Heterozygosity for Factor V Leiden and Transient Protein S Deficiency and The factor V Leiden mutation confers resistance to protein C activation and the subsequent degradation of factors Va and VIIIa Pathophysiology In the normal person, factor V functions as a cofactor to allow factor X to generate the active form of an enzyme called thrombin. Thrombin in turn cleaves fibrinogen to fibrin, which polymerizes to form the dense meshwork that makes up the majority of a clot. Activated protein C (aPC) is a natural anticoagulant that acts to limit the extent of clotting by cleaving and degrading factor V. http://en.wikipedia.org/wiki/Fibrin Fibrin is a protein involved in the clotting of blood. It is a fibrillar protein that is polymerised to form a "mesh" that forms a hemostatic plug or clot (in conjunction with platelets) over a wound site. Fibrin is made from its zymogen fibrinogen, a soluble plasma glycoprotein that is synthesised by the liver. Processes in the coagulation cascade activate the zymogen prothrombin to the serine protease thrombin, which is responsible for converting fibrinogen into fibrin. Fibrin is then cross linked by factor XIII to form a clot. Recent research has shown that fibrin plays a key role in the inflammatory response and development of rheumatoid arthritis.

Betty, Was your son's reaction reported to VAERS? Do you happen to have a copy of his immunization record? We could probably track down whether it contained thimerosal or not, if you do. You would not believe how many Dr.s are totally unaware that there are still immunizations containing thimerosal.

Judy, Just search sed rate, lots of articles will pop up. http://www.mayoclinic.com/health/sed-rate/HO00025 How is your little guy doing?

Here is the one on herpes viruses http://www.jci.org/108/4/503?content_type=full Herpesviruses and heparan sulfate: an intimate relationship in aid of viral entry

here is one study on this subject regarding strep http://www.ingentaconnect.com/content/bsc/...000010/art00021

CP, I'm going to post something on the basalganglia thread that might help to explain this. Again it might leave you with more questions than answers, but I think it's worth thinking about.

I think these are some very important concepts to at least have a little understanding of. It sure appears to me that much of this applies to TS too. As many of you know the sulfur/sulfur transferese are of the utmost interest to me. http://www.autism.com/medical/research/adv...metabolics.html Advances in Autism Research compiled by Teresa Binstock for ARI April 2008 Metabolic pathways -- Clinical Significance Methionine synthase - Glutathione - Homocysteine - etc In recent years, several studies have presented data and an overview of a primary metabolic pathway relevant to many and perhaps most cases of autism (1-4). Jill James and her colleagues have published widely in peer-reviewed journals, as has Richard Deth and members of his team. Their findings in autism are among the most important to be published in recent years. The intra-cellular pathways to which these researchers are calling attention have treatment ramifications already being utilized by clinicians (eg, 5-7). The "methionine cycle" merits our attention (reviewed in 44, free online). Most human genes are controlled by methylation, and errors of methylation can affect how genes function or malfunction. Atypical methylation has been found in autism (1). Many reviews of methylation are available (eg, 8-17). Some focus upon nutrients(eg, 12). Others specifically mention transsulferation and homocysteine (eg, 11) and ramifications for toxicology (eg, 13). All studies in these domains - and not just those presented herein - are relevant to autism in ways delineated by James et al, Deth et al (eg, 1-4) and others.

This one is interesting too http://www.ediver.be/ediver/latest%20news/...catabolites.pdf The immune effects of TRYCATs (tryptophan catabolites along the IDO pathway): relevance for depression – and other conditions characterized by tryptophan depletion induced by inflammation

Kallik, Our local Health Dept has an office where you can take samples of well water for testing. Chickens were testing high for arsenic. I think they were being contaminated from feed. As you said, well water or even municipal water supplies. http://www.epa.gov/OGWDW/arsenic/basicinformation.html#seven

Maryann, That sounds like a whole lot of bucks for pro biotics to me. We use one called Gr8Dophilus that I buy locally at a health food store. It's $17.99 for 60 capsules. It contains 8 strains/4 billion potency. Unless this Dr. has one awesome product, I might think he is ripping you off royally. I sure hope I'm wrong

mackmom, I thought I remembered something about magnesium deficiency and MVP. If you do a search of "Mitral valve prolapse magnesium deficiency" lots of articles come up. This one looked like it had some interesting stuff at a quick glance http://www.diagnose-me.com/cond/C165243.html You might want to search Pub Med and see what studies you can find on mag def. and MVP too.

Caryn, Thought this was interesting. One of two genes involved in oldest son's condition ...EXT2 on 11p11-p13

Whoo hoo Carole, wonderful link!

Caryn, I believe you and I are coming from the same place. I think I'm just a little higher on the "gene chain." I recognise so many of the symptoms you just listed from my research which I'm warning, is not for the faint of heart, although as this research emerges, I think there is great potential for correcting many of the issues that plague our kids. possibly quite easily. I believe these dots are only starting to become connected (and new genes involved discovered). I think wheat/gluten intolerence will be explained in the very near future. In the mean time (and remember when you first start looking at this phrase, be prepared to think "this certainly doesn't apply to our family/my child.....and it may not) would you mind searching "congenital disorders of glycosylation" and see if anything jumps out at you in regards to celiac type issues? Since you are so up on this topic, you might pick up on some important things. Quite honestly, I'm emotionally drained.

Search vit K for bruising/bleeding issues. Vit K2 in particular. Might want to have levels checked. http://en.wikipedia.org/wiki/Vitamin_K