Ozimum

A new study has found a link between Autism and mercury. The evidence is mounting... News item today: http://www.theage.com.au/national/mercury-poison-linked-to-autism-20110809-1iky6.html Article published in Journal of Toxicology and Environmental Health, July 2011: http://xa.yimg.com/kq/groups/13028904/1962381005/name/Shandley+%26+Austin+2011.pdf

Hi Stephanie, I'm right there with you! I've done the fortnightly sessions with a psychologist from before we went to a biomed dr and before we got the PANDAS diagnosis, so she got an education too! She was on board before the excruciating exacerbation that finally got us on the path to PANDAS. It helped me to have someone who would just listen and was able to reassure me that I wasn't losing my mind and that my anger came from powerlessness and sheer fear. I was able to lay it all out - what I had seen, the conclusions I had come to, the reading I'd done. It became a way for me to plot the course and have a sounding board...and that helped. That said, it also helped changing our family doctor from the disbeliever to a GP who was also a homeopath and had done some biomed training. It was so reassuring that he "got" PANDAS. (He now backs up our Biomed dr.) He immediately cottoned on to the fact that I was NOT coping...(PTSD without the post!) He ran a batch of blood tests (V.low Vit D - surprise! surprise!) and gave me some supplements, some drops and a probiotic. That helped enormously! So yes...I reckon the homeopath is the way to go. Hugs to you!

Hi TH, This stuff sounds like something a good Biomed/DAN doctor could help with. It could be a range of things...reacting to glutamate, leaky gut, salycilates, soy?... I'm no expert but my ds17 is responding well to Biomed treatment and a diet of predominately meat/fish and veggies (GF/CF, low sugar, no potatoes, low grains, etc.) It may be worth reading the book by Dr Ken Bock - "Healing the new Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A disorders." It was published in 2007 and he said recently he would like to update it, but I think it's still pretty relevant.

Pandas16, I'm so pleased for you. We need trail blazers like you. We happily put probiotics into our systems and what are they but bacteria...'good' bacteria, but still bacteria. They're only 'bad' when they're in overgrowth/out of balance. I see TSO in a similar way. We've got so much to learn about how our gut works...it's the new frontier surely. So yes...I'm excited! Whoohooo!

Hi and welcome, I just had to respond...my son does not have Tourettes but he does have PANDAS and a few bells went off as I read your post. He also has leaky gut/gut dysbiosis. I suggest you have a look at the useful threads right at the top of the PANDAS page of this forum - you will find there a pretty comprehensive list of possible PANDAS symptoms. Plenty of PANDAS kids also have gut issues and it may well be a good idea to have it checked out. Personally I favour seeing a good DAN/Biomed doctor - they are more likely to really "get" gut issues. Gut issues can also be linked to allergies and immune issues. I'm a little cynical as to how "informed" your ped is on PANDAS...I'm sure it happens, but it seems to be rare! Trust your gut on this and delve deeper before dismissing it. Good luck!

Hi, The GF/CF diet is helpful for many people on the autism spectrum, because they tend to have gut problems and crave carbs, which doesn't help. The theory is that the protein (gluten and casein) isn't digested properly due to gut dysbiosis/leaky gut and it breaks down to opioid peptides which impact on concentration/focus and affect pain threshold, which can further mask problems. DS17 was diagnosed last year with Aspergers, then leaky gut, then PANDAS... We went the Biomed route and with testing we found a bunch of deficiencies and a sensitivity to casein. In order to help heal his gut (along with vit supps and probiotics) we've all gone GF/CF, no potatoes, low grains, low sugar etc, or in other words we eat plenty of meat, fish and veggies and we're all healthier as a result. I'm hoping like crazy that in healing his gut, his immune system will be in better shape to fight off future infections. So far so good. DS reported he is better able to concentrate - his words "It feels like the fog is lifting." I attribute that to the GF/CF diet. The gluten stays in the gut for a couple of months so for some people it may take that long for real progress to show up. Casein stays in the gut for a few days to a week so improvement there may be more obvious. For us we saw gradual improvement over about two to three months. (It did take us a while to completely eliminate gluten - it's surprising where you'll find it (bacon for eg! It's possible to get it GF.) It's not as hard as it might seem. It helps to think in terms of what we can eat, rather than what we can't. We will continue on the diet because we feel good on it. Good luck.

Going back to thimerosol, I found this interesting ... "Does vitamin D explain the role of vaccines, mercury, and heavy metals? Vitamin D's role in increasing glutathione levels may explain the link between mercury and other heavy metals, oxidative stress, and autism. For example, activated vitamin D lessens heavy metal induced oxidative injuries in rat brain. The primary route for brain toxicity of most heavy metals is through depletion of glutathione. Besides its function as a master antioxidant, glutathione acts as a chelating (binding) agent to remove heavy metals, like mercury. Autistic individuals have difficulty excreting heavy metals, like mercury. If brain levels of activated vitamin D are too low to employ glutathione properly, and thus unable to remove heavy metals, they may be damaged by heavy metal loads normal children easily excrete. That is, the mercury in Thiomerosol vaccines may have injured vitamin D deficient children while normal children would have easily bound the mercury and excreted it. These studies offer further hope that sun-exposure or vitamin D supplements may help autistic children by increasing glutathione and removing heavy metals. Not only do we have more clues that vitamin D is involved in autism, the vitamin D theory just did something else: it explained two other theories of autism, the mercury accumulation theory and the oxidative stress theory. Lin AM, Chen KB, Chao PL. Antioxidative effect of vitamin D3 on zinc-induced oxidative stress in CNS. Ann N Y Acad Sci. 2005 Aug;1053:31929. Valko M, Morris H, Cronin MT. Metals, toxicity and oxidative stress. Curr Med Chem. 2005;12(10):1161208. Kern JK, Jones AM. Evidence of toxicity, oxidative stress, and neuronal insult in autism. J Toxicol Environ Health B Crit Rev. 2006 NovDec;9(6):48599." http://www.vitamindcouncil.org/health/autism/vit-D-and-brain.shtml And this link is worth a read too: http://www.greenhealthwatch.com/newsstories/newsvitd3/vitd-autism.html ...in particular: "Is autism an ongoing inflammatory disease process? Abnormal inflammation is associated with both autism and vitamin D3 deficiency. For example, autistic individuals show increases in cytokines (inflammatory cells) in patterns very similar to those seen in immune processes regulated by vitamin D3 where vitamin D3 levels are deficient. [9] Both the brain and the blood of autistic individuals show evidence of ongoing chronic inflammation and oxidative stress, suggesting a progressive and probably increasingly destructive disease process. If this ongoing inflammation could be interrupted, the symptoms of autism might improve. Given vitamin D3s powerful anti-inflammatory properties, a vitamin D3 treatment for autism may be very effective. We already know that vitamin D3: decreases production of inflammatory cytokines in the brain, which have consistently been associated with brain impairment stimulates neurotrophin release (neurotrophins induce the survival of nerve cells) reduces toxic calcium levels in the brain, and inhibits the production of nitrous oxide (nitrous oxide destroys brain cells) increases concentrations of glutathione, the brains master antioxidant [10] Does vitamin D3 explain the role of vaccines, mercury, and heavy metals in autism? Activated vitamin D3 increases glutathione levels in the brain The main reason heavy metals can reach toxic levels in the brain is inadequate levels of glutathione Glutathione acts as a chelating (binding) agent to remove heavy metals, like mercury Autistic individuals have difficulty excreting heavy metals, like mercury This may explain why the tiny amounts of mercury in vaccines or in the mothers teeth appear to injure some children but not others. Did the non-injured children enjoy higher levels of vitamin D3, giving them higher levels of glutathione and making their bodies better at capturing and excreting the mercury? Both a mercury accumulation theory and an oxidative stress theory already exist for autism [12]"

"Hi, Question----Ozimum, when do you "restrict" these foods? When you are, actively, on the antibiotics or when you think you are having a yeast flare up ( craving the carbs, ragey, etc)?" We've restricted these foods anyway as part of a gut healing diet for DS, but for myself whenever I have a flare up, I know I've overdosed on those foods - I'm better if I go "low". (My secret stash of chocolate is NOT a good thing!) It seems we tend to crave the things that do us the least good... And, my family is just a lot healthier for a diet of meat/fish and veggies (GF/CF, low grains, no potatoes, etc.) So for us that means lots of grills/BBQs/stews or casseroles/salads/veggies. I make up big pots of meat stews (with lots of veggies) eg.bolognese and GF pasta, and freeze it in portions for DS17. Whenever the snack attack hits he can help himself and heat it in the microwave - for his breakfast too (!)

Hi Shiela, Along with the probiotics, the Biomeds say to restrict foods which contain yeast (eg bread) and those foods which feed yeast (sugar) and mold/fungus foods (eg cheese, mushrooms). Good luck.

Hi, I take the view that knowledge is power. Our DAN! dr tested for food sensitivities and you could have knocked me over with a feather when we discovered DS17 was sensitive to milk. He'd never given me any sense of allergies or food sensitivities before this, but his gut just wasn't digesting it. Even he realises the gut healing diet (GF/CF etc) has helped him (along with the DAN protocols) - he's just so much healthier on it, and so are we! This last school term is the first autumn term that he's not had a heavy cold in about 5-6 years. And given we're all on the diet with him, we've not had colds either...what does that tell you...? I'm a believer!

I don't know anything about Dr Chugani but I did come across the following from the PANDAS Network: http://pandasnetwork.org/strep-controversy/encephalopothy/ Possible Test for P.A.N.D.A.S. – Looking at the Basal Ganglia? Basal Ganglia Imaging Study by Dr. Harry Chugani The rogue white blood cells that cause P.A.N.D.A.S. affect the basil ganglia of the brain. The basil ganglia are several brain structures located in the center of the brain. They function as a communication route to other parts of the brain and are partly responsible for the movement of our body. Other parts of the basal ganglia are involved in memorization, cognitive and emotional processing, and again initiating movement. There is still much to be learned about how this part of our brain functions. It is theorized that P.A.N.D.A.S. causes an inflammation of the basil ganglia. A 1999 study by Ranjit C. Chacko, M.D. showed a connection between OCD and the basil ganglia. Now, Dr. Harry Chugani at Children’s Hospital of Michigan, is studying the potential use of PET scans as diagnostic tools for P.A.N.D.A.S. Dr Chugani states that the basal ganglia are not hard to detect on an MRI scan. In fact, the basil ganglia are large structures. However, the MRI scan is not useful for detection of abnormal microscopic, neurological functioning in the basal ganglia because MRI scans look at anatomy, i.e., tissue density and damage, water displacement, inflammation of tissue (and not the neurological function of this part of the brain). PET scans, or Positron Emission Tomography scans, may be used instead of, or in addition to, magnetic resonance imaging (MRI) scans. This gives anatomic andfunctional information. The PET scan works by using PK-11195, a radioactive material, to target the inflammatory cells of the brain. This chemical is attracted to inflammatory cells and gives information on how the basil ganglia are functioning. Some of the PET scans on P.A.N.D.A.S. children are identifying inflammation in the basal ganglia. This may be useful as the long awaited confirmation of P.A.N.D.A.S. that parents have sought. Dr Chugani said, “By finding PET scan evidence of abnormality in the basal ganglia, we may now have a biomarker for P.A.N.D.A.S. Indeed, following IVIG in some P.A.N.D.A.S. subjects, the abnormality in basal ganglia has gone away on repeated PET scan. These studies are rather preliminary, on a limited number of subjects, and much more work needs to be done.”

Hi there, Welcome to the forum. I'm a fan of DAN!s (my son's DAN! is my no. 1 hero!) so I would definitely talk to yours about PANDAS - a good DAN! should know the protocols. I'm assuming your DAN! has ordered some tests for vit/mineral levels and stools etc? Those results can often be quite illuminating and will determine how to proceed. Getting the immune system back on track will take time but it's worth it! For us we saw slow but steady progress over some months, and DS17 is much happier and healthier for the diet (and so are we!) and supplements (including probiotics, omegas), as well as less anxious, less OCD, etc. Hang in there. Edit for typos...

Hi Pandas16, Yes. My son's DAN! dr put him on a protocol of Mutaflor, which contains the strain Escherichia coli Nissle 1917. That was after dealing with overgrowths of strep, staph and clostridia using a series of antibiotics, and supported by other probiotics, enzymes and vit supps. We will retest in the next few weeks to see how things have changed, but going on how well he is (and happy! less anxious, etc, etc) I'm betting the results this time will be much better. Edit to say...Initial testing for DS found he had less than 0.1% E.coli in his gut, when the norm is supposed to be between 70-90%. That had huge implications for his immune system as well as production of neurotransmitters, etc, etc.

Recently I attended a talk given by a DAN! dr and he said that 'good' probiotics, good intestinal health and Vit D all support T-reg cells which are important for balance between Th1 and Th2. So many of us are low in Vit D and have gut issues...it makes some sense to me and my DS is much healthier for DAN! protocols (and so am I!)

Hi Wilma, Just to be clear...do you mean you would like to get testing done for yourself, through your child's doctor? or for your child?

Hi cab40, You are not alone. Our Ped was useless, along with our now ex family doctor! I'm not sure a psychiatrist is likely to be that PANDAS savvy. A psychologist might be helpful, particularly when the PANDAS symptoms abate. I'm not sure - have you found a PANDAS dr? Do check the helpful threads right at the top of the PANDAS/PITANDS page, if you haven't yet found them. Have you considered/heard of a DAN! doctor? DAN! stands for Defeat Autism Now! Google ARI - Autism Research Institute (I think) to learn more. A DAN! dr or Biomedical dr is one who has done training in alternative treatments for kids on the spectrum and usually involves sorting out suitable diets (eg gluten free and casein free) and checking vitamin and mineral levels for any deficiencies. Many on the spectrum will be deficient somewhere. It's important because deficiencies wreak havoc on the immune system causing issues with allergies/asthma/ADHD and Autism. These issues often stem from gut problems so DANs will recommend probiotics. A good DAN! dr is a real treasure, particularly if they have had experience with PANDAS. I have a friend who credits our DAN! dr for sorting out her kids' ADHD issues and he helped my son with PANDAS, leaky gut/gut dysbiosis and Aspergers.(My son's DAN! is my no 1 hero!) I also recommend reading Dr Ken Bock's book "Healing the New Childhod Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders". He's a DAN! dr and he also discusses PANDAS. Someone in your local Autism support community is bound to know of a good and hopefully local DAN!/Biomedical dr. Ask around until you find a recommendation. (Don't be put off if you don't find one straight away. Not everyone in the Autism community has cottoned on to how good a DAN! can be. So you may need to persist.) And check out the ARI website for some advice on finding a DAN! Good luck! Hang in there!

We've had good results working with a good DAN dr. Anxiety, anger, OCD, 'drop out' moods, fatigue, odd urinary stuff - all ramped up in exacerbation and always coincided with colds or flu. The DAN has helped sort out ds gut issues, and hence his immune system so that he now has a chance of fighting off the colds and is as healthy now as I've seen him for years. Our ped didn't even want to think about his health, just wanted to put him on meds. Grrr. The DAN dr did some useful testing and put him on a sequence of antibiotics to deal with strep throat as well as overgrowths in his gut (including a different strain of strep), along with Vit amd mineral supplements, probiotics and a gut healing diet (and a very low dose of an ssri - beware these as they can activate some kids) and ds is now in a really good place, and not currently on antibiotics. The Asperger's diagnosis has helped him get extra accommodations at school. I'm hopeful that most of the things we thought were Aspie will continue to abate. So far so good! Good luck!

Last weekend I attended a talk given by Dr Ken Bock on autism and the immune system. He said immune balance is key and our kids immune systems are often skewed to Th2 (though it can also skew the other way to Th1.) If activation of Th2 is dominant then our kids need antioxidants, probiotics, a good fish oil, anti-inflammatories... His book "Healing the Childhood Epidemics" on the 4-A disorders is well worth a read. It makes sense to me and the DAN protocol seems to be working for ds. This is the first term in about 5 or 6 years he hasn't lost a week or more off school due to a heavy cold. He's in such a better place than he was this time last year when PANDAS was rampant! Also, a gut healing diet was a fundamental underpinning for this improvement so that his immune system had a chance to function properly. (If we can get through the winter term here without drama I will be shouting it from the tree tops!) Edit to add that Vit D supports the Treg cells for immune balance. Most of us tend to be low on Vit D! And ds was VERY low as we got started on treatment

Sorry I can't really answer your question...but have you found this website? http://www.hhv-6foundation.org/testing.htm "Elevated IgG antibody levels. Elevated IgG antibody levels can suggest, but not prove active, chronic infection. In a 1996 study of HHV-6 in CFS patients, 89% of the patients with IgG titers of 1:320 and above were found to have active infections by culture. (Wagner, Journal of Chronic Fatigue Syndrome)Stanford infectious disease specialist Jose Montoya believes that the best evidence of smoldering central nervous system (CNS) infection is the IgG antibody to the virus, and not the virus itself. In a pilot study, he found that when patients with high titers of HHV-6 IgG (1:320, 1:640 or higher) and EBV are treated with a potent antiviral; their titers fall substantially along with a significant improvement in symptoms.5 Elevated IgG Antibodies to HHV-6 cannot tell you for certain that the infection is active, but high titers support a clinical diagnosis. Similarly, elevated EBV VCA (late antibody) titers cannot indicate with certainly that an infection is active. However, EBV Early Antigen (EA) antibodies disappear rapidly after an infection is over, so elevated EBV EA antibodies do predict active infection."

Hi Dave, If you haven't yet found them yet...there are two pinned threads at the top of the PANDAS and PITAND forum topics page - one for abbreviations, and the other (the top most thread) is labelled - Helpful Threads for PANDAS. Also, the search engine might be a bit slow but is actually really useful.

The Biomeds say reduce yeast proliferating foods in the diet - sugary foods, bread and cereals, and take probiotics. (Holds true for me!)

For any Aussies who haven't seen this article: "Bad Blood - Lyme Disease in Australia." The article was published on Saturday 11th June, 2011 in both "The Age" and the "Sydney Morning Herald." The following link takes you to the Lyme Disease Association of Australia which then links you to the article. http://lymedisease.org.au/news/sydney-morning-herald-article-on-lyme-disease-11-june-11-2/

For any Aussies who haven't seen this article: "Bad Blood - Lyme Disease in Australia." The article was published on Saturday 11th June, 2011 in both "The Age" and the "Sydney Morning Herald." The following link takes you to the Lyme Disease Association of Australia which then links you to the article. http://lymedisease.org.au/news/sydney-morning-herald-article-on-lyme-disease-11-june-11-2/

Hi Christina, Welcome to the forum...sorry you have to be here but glad you found us. First, if you haven't already, do read the useful threads pinned at the top of the PANDAS board. My ds 17 was diagnosed with Aspergers last year. He had a history of ear infections and got every cold that went around. Before last year he did not have enough to put him on the spectrum. Then he went PANDAS. We went down the Biomed/DAN road. Our DAN dr prescribed antibiotics initially to deal with the strep and also with overgrowths of another strain of strep in the gut, as well as overgrowths of staph and clostridia (Leaky gut/dysbiosis found through testing). He also did testing to reveal some (unexpected!) vitamin and mineral deficiencies and food sensitivities which all had implications for the immune sytem and the central nervous system. Since then, DS has been on vit and mineral supplements, probiotics, and a gut healing diet, along with a very low dose SSRI (beware SSRIs as they can be activating for many on the spectrum). He has been so-o-o-o much better - he's healthy, better focussed, lots of eye contact, less anxious, less OCD etc, etc. He's been able to throw off colds quickly, without missing lots of school as previously. And he's not had an exacerbation since we started on Biomed treatment. (Yay!!!! I'm so hoping it stays that way!) This has worked for us. Maybe we've just been lucky so far, but at the very least his health has improved markedly! (And his acne!) Given your son is on the spectrum, you might also consider seeking out a Biomed/DAN (Defeat Autism Now!) doctor. I also recommend Dr Ken Bock's book "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking program for the 4-A Disorders" (He's a DAN dr.) He also discusses PANDAS. I've just read it and thought it made lots of sense, given what we're finding with our ds. (Edit for typos !)

I've just read your other thread and wanted to add that I also recommend Dr Ken Bock's book "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders." (He's one of the Biomed/DAN doctors.) He also discusses PANDAS. Hang in there!