3bmom

What type of shampoo are you using? Organic will keep chemicals away. Showers open up our skin our largest organ for more absorption. Maybe a shower filter. Tea tree oil may be good or bad. If you have Lyme or co-infections it may exacerbate the pathogens causing pain.

This is a link Rachel that you posted under lowering glutamate. It is from a RLS website. Interesting the crossover. http://www.rlcure.com/glutamate2.html

I had not seen this article. Very interesting. I have heard Seneff speak on Utube in regards to the Glyphosate and chelation of essential minerals. I don't know if her theory is perfect but she connects almost all of my own dots very closely. I know they want to discredit her just like Dr. Huber. Do you know about him? Retired Colonel after 40 years working for our gov't in plant pathology. Internationally known, reported to the Surgeon General, and our FDA is ignoring him about a new pathogen. Crazy!

http://www.houston-enzymes.com/store/product.php?c=12&p=108 I came across the info below when going to the website from the article on this forum's home page about Digestive Enzymes . I find it interesting that Autism may be related to missing soil bacteria which is probably also true for some of our kids but missing this flora may explain the wide prevalence of strep. As I have mentioned before Round Up is heavily sprayed on our foods especially GMO food. There has been no oversight in these amounts since 2009. Round Up is patented as an antibiotic which can explain many disruptions in our gut. Round Ups glyphosate kills these good bacteria. OraCidinOraCidin contains BLIS K12®, a strain of S. salivarius bacteria. This beneficial bacteria normally occurs in the mouth and throat. OraCidin promotes friendly bacteria balance in the mouth and throat and protects against bad breath. BLIS is an acronym for "Bacteriocin-Like Inhibitory Substance. The "K12" refers to the numbering system used to classify the probiotic bacterium. Most of the time we think of probiotics as something only found in the gut, but certain probiotic bacteria are found only in the mouth. BLIS K12 bacterium were originally found to be abundant in the mouths of people who appeared to show extremely strong immune systems. This probiotic is a natural bacterium that occurs in the mouth and throat. It supports normal immune function in the oral cavity and keeps the bacteria that produce bad breath from proliferating. The bacterium produces two BLIS compounds that help keep competing bacterium in check and also protects the BLIS K12 probiotic when threatened by non-friendly bacteria. BLIS K12 has been sold in New Zealand since 2002.

mamasluvyou, thanks for the info. flmom, We did one month of diet, than slowly started Valacyclovir HCL at 1 gram for a week, than 2 pills, than 3/day. My DS was 11 and 1251lbs at the time. We didn't see die off with him but we did with my father-in-law who appeared more confused but than much improved. One step back two steps forward. We were lucky and saw some improvement right away but his flare was horrific. Everyday he got better and became more rational. Because our Dr goes slow and one thing at a time, we didn't lose some serious compulsions till antibiotic was added a month later. The combo was truly what he needed. The good news for evidence based medicine is his titers moved from 16x normal to 0 in 6 months. I think that is important since I had a Dr say titers don't mean anything. Our Dr. is older and in medical school he said they were taught treat anything 4x higher. My middle child when age two got cold sores 4x a week and was put on a liquid form of Valacyclovir for 7 years. This was thru a large hospital and many tests. I am trying to get his records. Always wondered if he would of had Autism, since it was after his vaccination, and he is also my dyslexic son. I definitely wonder about that gene. I will keep you in my prayers. Please keep me posted.

Below is my post today for teenager with PANDAS. Thought it may help you too so I copied it. There is a lot of great info on this website. It may be overwhelming but you can learn from those who have paved the way. Welcome and hugs for being an awesome mom! My DS is 15. We have been on this journey since he was 6. We didn't have a knowledgeable Dr till 11 when we had the anorexia-like component rear its ugly head and lost 30 lbs in 2 months. He wouldn't eat because he didn't want to grow taller. Wacky. Some PANDAS kids have poor reactions to SSRI's. Our Dr has a very strict protocol that has to be followed first and since it brought our son back to stable we follow his directions. First a Dairy free, grain free (except one serving for a sandwich), GMO free diet. Basically the Paleo Cave man diet to eliminate inflammation in the brain. We were not allergic to nuts except peanut sensitivities. After diet we did Anti-virals, check post on Valcylcovir and then Antibiotics We then introduced Sertraline and fortunately didn't have any issues. Our Dr. does a Neuro-spect brain scan of the frontal lobes. Here he finds most of the kids have areas of low blood flow shown like dark pools in the brain. He says the SSRI will keep seratonin in the frontal lobes to promote healing. He can show this on follow up scans but more important on behavior. He does blood work every 6 weeks and it will show if you are not following the diet which after many years he feels is the foundation to healing. Our DS lost his ability to read, write and calculate math. At the time of his flare he had D's and F's. We are now back up to A's and B's. I can only speak of our experience. It is truly an individual journey but here you will have help and support for the twists and turns. That being said I would ask your Dr to try Valcyclovir before respirdol. My concern would be the side effects of resperidol. On a different note females need to have a thorough GYN exam. Cysts on the ovaries, (maybe elsewhere..I have boys) can have the same psychiatric symptoms. GMO food promotes these cysts even in very young girls. What an amazing sister you are! Please keep us posted.

My DS is 15. We have been on this journey since he was 6. We didn't have a knowledgeable Dr till 11 when we had the anorexia-like component rear its ugly head and lost 30 lbs in 2 months. He wouldn't eat because he didn't want to grow taller. Wacky. Some PANDAS kids have poor reactions to SSRI's. Our Dr has a very strict protocol that has to be followed first and since it brought our son back to stable we follow his directions. First a Dairy free, grain free (except one serving for a sandwich), GMO free diet. Basically the Paleo Cave man diet to eliminate inflammation in the brain. We were not allergic to nuts except peanut sensitivities. After diet we did Anti-virals, check post on Valcylcovir and then Antibiotics We then introduced Sertraline and fortunately didn't have any issues. Our Dr. does a Neuro-spect brain scan of the frontal lobes. Here he finds most of the kids have areas of low blood flow shown like dark pools in the brain. He says the SSRI will keep seratonin in the frontal lobes to promote healing. He can show this on follow up scans but more important on behavior. He does blood work every 6 weeks and it will show if you are not following the diet which after many years he feels is the foundation to healing. Our DS lost his ability to read, write and calculate math. At the time of his flare he had D's and F's. We are now back up to A's and B's. I can only speak of our experience. It is truly an individual journey but here you will have help and support for the twists and turns. That being said I would ask your Dr to try Valcyclovir before respirdol. My concern would be the side effects of resperidol. On a different note females need to have a thorough GYN exam. Cysts on the ovaries, (maybe elsewhere..I have boys) can have the same psychiatric symptoms. GMO food promotes these cysts even in very young girls. What an amazing sister you are! Please keep us posted.

Another note. My DS myco didn't budge till I started addressing my own titers that are sky high with no respiratory symptoms.

I have only read a little on Dr. Garth Nicholson and that the military had bestowed on him one of their highest honor medals for his research and help to Gulf War Veterans in getting them well. I have wondered why he has disappeared from the scene. Makes sense they don't want a connection between infections and mental health. Would love to run a panel of titers on the 1 of 4 Veterans from Iraq and Afghanistan who suffer from metal health issues. They have sacrificed so much and deserve an accurate health assessment and not have it swept under the rug of PTSD.

If contacting advocates and Attorney General don't provide results I would try change.org. Insurance companies don't want the bad press and a silver lining is more people would understand the devastation PANDAS has both on the family but also costs in the long run for schools.

Our PANDAS DS gets it from an AUTISM immunologist. My older DS has chronic fatigue at 19. He is much improved on Valcyclovir and no longer looks pasty white. He gets it from his internist. Any titers over 4 fold should be addressed. My oldest son got ADD at 20. His Dr. said titers don't mean anything even though his titers were 20x higher than normal! He gave him a year long prescription for a SSRI and no follow up! Needless to say we left him. With treatment cognition and behavior should improve and titers either drop back to zero or at least in normal range. Our Pediatrician once said if a medicine doesn't have bad side effects and it may help it should be worth a try. He said there is still so much we don't understand. Wish I had seen him before we went to the hospital! It would of saved us the trauma of a psych ward. In 36 hours with Valcyclovir my PANDAS DS turned the corner. Mamaluvsyou how do you know about the possible genetic deletion? Looks like we probably have that too.

I find it interesting the increase since the 90's. Also all patients eating the standard American diet are consuming large amount of antibiotics, since 80% of all antibiotics in US are used in food sources. Round-Up is patented as an antibiotic and it kills off intestinal flora thru their shikimate pathway. What happens when this flora gets knocked out depends on your individual innate immune system. That may be why there is such a variance of infections among our kids and the difficulty in treating them.

Thanks! I just registered. I had been wondering what type of "Vitamin Cocktail" helped Aid Patients in the movie, "Dallas Buyers Club" along with the protein for Brain cognition.

Curious to the how. The links connected most of my dots for the why. Some of the links are like reading medical grad work, but others will give you the gist of it which may help with your phone call. Sounds pretty exciting. Good Luck and keep us posted.

If you read the links on the posts from Rachel and Rowingmom in Glutamate supplements, Kynurenic Acid, and Autism, PANDAS being Low Grade Encephalitis, it will talk about the microglial activation. If I remember, (not the best) from talks at the UCI PANDAS conference these effect the astrolytes and neurotransmitters. My takeaway was our kids brains are not permanently damaged just inflamed. Maybe that is why some kids are now "off" the spectrum. My question to you is how? Who?

Yes! That is the dose my son takes and we gave it to my Father-In-Law and it knocked out "Alzheimer" symptoms too. He had started acting just like my DS, smells bothered him, quick to irritate, confused, OCD about how I put food back in the refrigerator. We got him back quickly. After talking to a MS Dr who attended a PANDAS conference I wondered if there were any similarities. Following a couple of MS blogs I learned that some people were able to get rid of using their canes for walking after taking Valcyclovir. There is no coincidence Autism and Alzheimers have skyrocketed in the last 15 years. Toxins will effect the young and old first. The most vulnerable. My frustration is the "Big University" hospital similar to our experience would not do blood work for my Father-in-Law. We found out 6 months later when his elderly and curious Internist followed my request. He had both HHV-6 and low levels of myco. Thank God for Dr.'s who have a passion for healing!

Thanks! Just sent it to my Dr.

I think it is time to do the plunge and order 23 and Me. Anybody know if ordered outside USA they get the medical info? The cynical person I am unfortunately becoming finds it interesting that the FDA that has approved a 300% increased in pesticide use and about to approve Agent Orange on our food supply is the same office not allowing us access to our DNA profiles to heal our kids?

Awesome Info. Wish I had a Neuro on board. I posted one of the papers separately. I am sending it to some of the Dr.s I know and a BBB expert. Fascinating is the gut, liver connection. I feel like all the dots are there. Now how do I erase them!

Rachel posted this info on another thread. We have been discussing high levels of Glutamate causing neurological behavior. The articles make a lot of sense in regards to sulfur/methylation disrupting Glutamate levels in the brain. They see this disruption from glyphosate, heavy metals and infections. Another paper links this to the gut and liver. Very interesting! http://connection.ebscohost.com/c/articles/85179098/encephalopathy-mechanism-renew-sulfate-autism Is Encephalopathy a Mechanism to Renew Sulfate in Autism? Seneff, Stephanie; Lauritzen, Ann; Davidson, Robert M.; Lentz-Marino, Laurie Entropy;Jan2013, Vol. 15 Issue 1, p372 This paper makes two claims: (1) autism can be characterized as a chronic lowgrade encephalopathy, associated with excess exposure to nitric oxide, ammonia and glutamate in the central nervous system, which leads to hippocampal pathologies and resulting cognitive impairment, and (2), encephalitis is provoked by a systemic deficiency in sulfate, but associated seizures and fever support sulfate restoration. We argue that impaired synthesis of cholesterol sulfate in the skin and red blood cells, catalyzed by sunlight and nitric oxide synthase enzymes, creates a state of colloidal instability in the blood manifested as a low zeta potential and increased interfacial stress. Encephalitis, while life-threatening, can result in partial renewal of sulfate supply, promoting neuronal survival. Research is cited showing how taurine may not only help protect neurons from hypochlorite exposure, but also provide a source for sulfate renewal. Several environmental factors can synergistically promote the encephalopathy of autism, including the herbicide, glyphosate, aluminum, mercury, lead, nutritional deficiencies in thiamine and zinc, and yeast overgrowth due to excess dietary sugar. Given these facts, dietary and lifestyle changes, including increased sulfur ingestion, organic whole foods, increased sun exposure, and avoidance of toxins such as aluminum, mercury, and lead, may help to alleviate symptoms or, in some instances, to prevent autism altogether. Tags: AUTISM; NITRIC oxide -- Physiological effect; HIPPOCAMPUS (Brain) -- Diseases; SULFATES; CENTRAL nervous system; GLUTAMIC acid; AMMONIA; MILD cognitive impairment Related Articles Glutamate in CNS Neurodegeneration and Cognition and its Regulation by GCPII Inhibition. Rahn, K. A.; Slusher, B. S.; Kaplin, A. I. // Current Medicinal Chemistry;3/21/2012, Vol. 19 Issue 9, p1335 Glutamate, first identified in 1866, is the primary excitatory neurotransmitter in the brain. While it is critically important in many highly regulated cortical functions such as learning and memory, glutamate can be much like the magic the Sorcerer's Apprentice used in Goethe's poem: when... S-adenozylo L-metionina w schorzeniach OUN. Krzystanek, Marek; Palasz, Artur; Krzystanek, Ewa; Krupka-Matuszczyk, Irena; Wiaderkiewicz, Ryszard; Skowronek, Rafal // Psychiatria Polska;2011, Vol. 45 Issue 6, p923 S-adenosyl L-methionine (SAMe) is the natural, universal methyl group donor, participating in transmethylation reactions, known and commonly used as a dietary supplement since 1952. It plays an important role in the synthesis of neuromediators and melatonin and mechanisms of epigenetic... Does a Pro-Inflammatory Process Precede Alzheimer's Disease and Mild Cognitive Impairment? Ferretti, M. T.; Cuello, A. C. // Current Alzheimer Research;Mar2011, Vol. 8 Issue 2, p164 No abstract available. Age-related dedifferentiation of cognitive and motor slowing: insight from the comparison of Hick–Hyman and Fitts' laws. Sleimen-Malkoun, Rita; Temprado, Jean-Jacques; Berton, Eric // Frontiers in Aging Neuroscience;Oct2013, Vol. 5, p1 The present study aimed to determine whether the general slowing hypothesis (GSH) could be extended to the motor domain by comparing cognitive and motor age-related slowing. To achieve this objective, we compared the slopes of Hick–Hyman's law and Fitts' law, in young and older adults.... A clinical study of the effects of lead poisoning on the intelligence and neurobehavioral abilities of children. Shuangxing Hou; Lianfang Yuan; Pengpeng Jin; Bojun Ding; Na Qin; Li Li; Xuedong Liu; Zhongliang Wu; Gang Zhao; Yanchun Deng // Theoretical Biology & Medical Modelling;2013, Vol. 10 Issue 1, p1 Background: Lead is a heavy metal and important environmental toxicant and nerve poison that can destruction many functions of the nervous system. Lead poisoning is a medical condition caused by increased levels of lead in the body. Lead interferes with a variety of body processes and is toxic... Persistent impairments in hippocampal, dorsal striatal, and prefrontal cortical function following repeated photoperiod shifts in rats. Zelinski, Erin; Tyndall, Amanda; Hong, Nancy; McDonald, Robert // Experimental Brain Research;Jan2013, Vol. 224 Issue 1, p125 Cognitive impairments are observed when learned associations are being acquired or retrieved during a period of circadian disruption. However, the extent of the functional impacts on previously acquired associations following circadian rhythm re-entrainment is unknown. The impacts of repeated... Elevated CNS inflammation in patients with preclinical Alzheimer's disease. Monson, Nancy L; Ireland, Sara J; Ligocki, Ann J; Chen, Ding; Rounds, William H; Li, Min; Huebinger, Ryan M; Munro Cullum, C; Greenberg, Benjamin M; Stowe, Ann M; Zhang, Rong // Journal of Cerebral Blood Flow & Metabolism;Jan2014, Vol. 34 Issue 1, p30 Alzheimer's disease (AD) is a progressive, neurodegenerative disease that may involve inflammatory responses in the central nervous system (CNS). Our objective was to determine whether patients with amnestic mild cognitive impairment (aMCI), a preclinical stage of AD, have inflammatory... Allosteric Inhibitors of NMDA Receptor Functions. Popescu, Gabriela K.; Murthy, Swetha; Borschel, William F. // Pharmaceuticals;Oct2010, Vol. 3 Issue 10, p3240 NMDA receptors are glutamate-activated ion-channels involved in many essential brain functions including learning, memory, cognition, and behavior. Given this broad range of function it is not surprising that the initial attempts to correct NMDA receptor-mediated pathologies with en-mass... Applications of Chemical Shift Imaging for AD. Scott, Christopher J. M.; Szilagyi, Gregory M.; Chavez, Sofia; Ganda, Anoop; Black, Sandra E. // Current Medical Imaging Reviews;Feb2011, Vol. 7 Issue 1, p88 With the global prevalence of Alzheimer's Disease expected to double in the next twenty years, the importance of early diagnosis and biomarkers for disease progression has never been more important. Magnetic Resonance Spectroscopy (MRS) is becoming an increasingly important tool for measuring...

For us when there wasn't big improvement on antibiotics, we had better gains with an anti-viral, Valcyclovir . I found it interesting that my non-PANDAS son was put on this for 5 years for multiple cold sores right after his 2 year old vaccines. Hang in there you have a great Dr. Very lucky!

I think you are right about testing. What works for one doesn't seem to work for others. Maybe we have stripped our bodies so much they become hypersensitive because there is no longer any balance. How we have a medical paradigm that puts medical conditions in little boxes is crazy. Everything is so interconnected, if I wasn't trying to heal someone I love I would find it very fascinating. Cara have you done 23 and me? You found taurine making things worse. It is all so frustrating! Now I understand why my Dr doesn't do supplements only diet. If you don't know your personal tapestry you can do more harm than good.

Cara, Rachel posted more info today that is truly amazing. Without taurine which our liver makes and is probably being annihilated due to food changes and pesticides we build up glutamate and worse Quinolic acid contributing to a host of issues including regressive Autism and Seizurses.

Another thought is that Taurine is a microbial component of our innate immune system which according to my DS Dr is collapsing. This would explain the myriad of infections that have reared their ugly heads. He has talked about this before the entero polio virus which is also a result of innate immune system. I am going to send him this info.

THANKS...The articles have great info in them. The first one about the liver and taurine. GMO fed animal studies out of Australia shows a disintegrating liver and dissolving intestines...Leaky Gut anyone? The liver effect on taurine which acts as a neuromodulator would correlate with larger amounts of calcium and glutamate in the brain effecting our children. It also explains vision, which my DS had issues with crossed eyes, reactive hypoglycemia too. My middle son with dyslexia was just found to have a heart arrhythmia also mentioned in the article. Electrolytes which I have always wondered and you know. I wonder if it would effect fibromyalgia too in regards to nerves and skeletal muscle which has appeared epidemically only since GMO's were introduced. The second article explains his last horrible flare because in addition to OCD, anorexia, anger he lost his ability to do math (always our flag even though gifted) along with reading etc like regressive Autism they mentioned. It talks about toxins in the Hypocampus and seizures. Some of us have activity in the frontal lobes where seizures are located without actual seizures. This makes so much sense. Dr T says in a sample of patients he found Parkinson's markers more than MTHFR. Besides the pesticides in food I used to be a major water bottle person, keeping a case in the car for my kids instead of juice....so many layers. I am going to try the taurine myself low and slow. I think I probably have that CBS mutation LLM talks about in regards to sulfur. I am looking for a Dr who would do the 23 and me. Seems so overwhelming for me like a foreign language but since our foods strip essential vitamins we need to figure out our individual tapestry to replenish without harm. Thanks again!