3bmom

Almost 90% of corn grown in the US and soy is genetically modified. The corn has the DNA of a bacteria put in every cell so when the bug bites into a corn kernel it's stomach will explode. Makes you wonder what does it do to our gut? They are finding this toxin in a majority of placentas showing it doesn't disappear. It also exposes us to more toxins than has been tested along with high levels of formaldehyde. Pigs fed this corn are irritable according to farmers. I posted a link under GMO's and also "genetic roulette".
 
When we gave up corn and did Paleo diet like S and S our allergy titers plummeted. our Dr now tells everyone to do this. My DS gained back his 30lbs in all muscle and sleeps well too. Sometimes I would think we were having a flare only to find out he ate something he shouldn't have and it takes a week at least to clear.

DD has never had allergy issues and both she and I seem to have 1/2 high histamine and 1/2 low histamine symptoms. So not sure which catagory she would fall into. She does develop very dark circles under her eyes with treatment herxes and yeast infections.
 
Reposting this from quannie47's post on "Interesting Article":
 
I found this thread on Phoenix Rising which lists several links pertaining to species of probiotic bacteria which either degrade or produce histamine:
 
http://forums.phoeni...obiotics.24643/
 
From BulletProofExec with lots of self promotion at the end of the article (which is why I sometimes have trouble taking this guy completely seriously):
Histamine producing bacteria: Lactobacillus casei, Lactobacillus reuteri, and Lactobacillus bulgaricus (Found in most yogurts and fermented foods). Neutral bacteria: Streptococcus thermophiles (also in yogurt) and Lactobacillus rhamnosus (shown to down regulate histamine receptors and up-regulate anti-inflammatory agents) Histamine degrading bacteria: Bifidobacterium infantis (found in breast milk), Bifidobacterium longum, Lactobacillus plantarum, and some soil-based organisms. From TheLowHistamineChef:
 
http://thelowhistami...han-raising-it/
 
The probiotic Lactobacillus rhamnosus (and a few others) down-regulate the IgE and Histamine 4 receptor while also up-regulating anti-inflammatory agents like (IL)-8. In English (to quote a group friend): the probiotic turns down the dial on two important allergy/mast cell cell/histamine receptors, while enhancing the activity of anti-inflammatory agents.

 
From Chris Kresser:
 
this study apparently looked at various microbial strains and broke them into three categories: one category that’s histamine producing; another category, which seems to be sort of neither histamine producing, nor histamine degrading; and then the third category would be histamine degrading. And so obviously you have histamine intolerance, you’d want to focus on the ones that are histamine degrading, and you’d want to avoid the ones that are histamine producing. And the histamine-producing category is Lactobacillus casei, Lactobacillus reuteri, Lactobacillus plantarum, and Lactococcus lactis, Enterococcus faecalis, and various types of E. coli. And then the ones that seem to degrade histamine and be beneficial are lots of bifidobacteria species, but particularly Bifidobacterium infantis and then Lactobacillus rhamnosus and salivarius and sporogenes and Lactobacillus gasseri.
This is the tip of the iceberg because there are a lot more species, obviously, of probiotics out there, and I personally wonder about soil-based organisms. I just anecdotally in my practice have observed that soil-based organisms are much better tolerated by people with histamine intolerance and people with SIBO, so my suspicion is that those are not histamine builders and may even be histamine degraders, but I don’t have any evidence to back that up.
 
I tried to find the original paper for this but had no luck.
 
Just my thoughts:
 
If our children's gut bacteria have been compromised with abx use or a diet containing pesticides (which also effects survival of beneficial microflora) the proper histamine regulating bacteria may be under or over-represented which could produce symptoms of histamine disregulation. This is perhaps why some children do better on acidophilus while some can't tolerate it, and why others do well with some bifido species but not acidophilus.
 
 

Gut dysbiosis can cause acne.
 

This is great information! Thank you for sharing.
 
Recently heard a radio host (Hartman) talk about the "vote with your money" dilemma in that big corporations own almost everything so that is difficult to do any more.
 
The below quotes were particularly interesting:
 
"The two main things that we were looking at here and the two main things that Howard Vlieger flagged as a problemas things that he was seeing in livestock, particularly in pigswere both things we found statistical significance for: (1) digestive health problems, particularly inflammation in the stomach, and also (2) reproductive issues. In this case, we've found this increased uterus weight," she says.
 
The industry immediately went on the offensive. Then, in what appears to have been a last ditch effort to get rid of this stubbornly incriminating study, the publisher (Elsevier) simply retracted it, for no other reason than its findings were deemed to be inconclusive. The thing is, inconclusiveness of findings is not a valid ground for retraction... Elsevier's actions caused a major backlash, and has undoubtedly opened more than a few eyes to the reality of censorship of "unwanted" research. Even the National Institutes for Health (NIH) scolded Elsevier in an editorial titled: "Inconclusive Findings: Now You See Them, Now You Don't!"

My2sons,
We are vegetarian, so I don't have any experience with organics meats. That's terrible that they are spraying them with gmo during processing, how frustrating!
 
We have found that we thought that she was sensitive to certain foods. We thought that she couldn't have dairy because she seemed sensitive. We also thought for a while that it was the gluten. Soy seemed to cause her to react. What we have found, is that it is just the pesticides, but not the food. She is so severely sensitive to pesticides, that even if she has a small exposure, she will tic. Fruit of all kinds is a big trigger, especially apples. She also has a huge reaction to potatoes that are non-organic. This includes potato flour in bread for instance. Corn is also a huge trigger. Nuts, as well.
 
Now she has no food restrictions at all. She can eat anything as long as it is 100% organic. If she accidentally eats anything that is not organic, especially fruit or potatoes, she will tic until it leaves her system, about two weeks. Some foods only cause her tics for about three days. Now that we have been extremely strict about her diet for several months, she seems to be healing and her body reacts less strongly when exposed to pesticides. Last summer her tics were constant and complex. The longest time between tics was less than two seconds. It was terrible. When we were eating mostly organic, we saw very little change. It wasn't until we went 100% until we actually saw a huge difference. It took a long time to realize what things we kept accidentally eating without realizing. Once we bought organic spices, and organic vitamins, etc, we saw that the tics completely went away.
 
What I realize is that since certain foods are treated with more pesticides than others, we started to think that it was those particular foods that were the trigger. What we found was that it was the pesticides themselves. She eats any kind of fruits, nuts, dairy, corn, eggs, vegetables, etc without reaction.
 
Also, we noticed a huge difference in her impulse control with no pesticides! I hope this helps!

Not that LLM hasn't explained all of this to us before, but this is a good overview:
 
http://www.dearpharmacist.com/2013/08/08/2394/
 
A part excerpt:
 
Usually in severe cases, the symptoms are due to toxin build-up; please note the methylation defect does not cause Lyme, which is a tick-borne illness. But the infection causes ammonia, quinolinic acid, acetylaldehyde, etc… and methylation defects reduce the person’s ability from properly detoxifying, repairing the damage and fighting the infection and co-infections. This explains the severe symptoms that come and go in some people, and why some folks herx so badly and others don’t.
 
One process of methylation turns on and off genes, this means it affects your DNA (genetic code). The ability to methylate helps you process toxins and hormones. For example, estrogen… you make it in your body, and you also get it from xenobiotics (chemicals in shampoos, pesticides, herbicides, plastics and more) if you can’t break down estrogen and get it OUT of your body, you could develop all sorts of disorders.
Methylation also plays a role in making and breaking down various neurotransmitters, such as energy producing epinephrine and sleep producing melatonin. Most people are concerned about making enough neurotransmitters but don’t sell yourself short. If there’s a problem breaking neurotransmitters down, then they will hang around in excess which may cause unwanted issues such as seizures, insomnia, panic attacks and fits of rage to name a few. See how methylation might apply to you or someone you love?!
 
Consider the people who might have a methylation problem: Children with autism, anyone with a seizure disorder, neurological condition, Alzheimer’s disease, cancer, severe Lyme disease, chronic infections, low T cells or reduced NK cells, diabetes, allergies, fertility issues, miscarriages, cardiovascular disease, chronic fatigue, anxiety or any psychiatric illness. Oh, and if you are extremely sensitive to medicine, or to laughing gas (given by the dentist) you might have a methylation problem, too. See my list above for other conditions associated with methylation problems.

A helpful guide for us in dealing with autoimmunity and PANS was; "identify the triggers" , "address infection (strep, gut dysbiosis, mycoplasma)" "heal the barrier systems (gut, blood brain barrier)" and "reduce inflammation". In regards to tumeric/ curcumin, here is a Pub Med research article from March 2014, and one from the Journal of Neuroinflammation".
 
http://www.ncbi.nlm.nih.gov/pubmed/24382451
Exp Neurol. 2014 Mar;253:102-10. doi: 10.1016/j.expneurol.2013.12.016. Epub 2013 Dec 29. Curcumin protects axons from degeneration in the setting of local neuroinflammation. http://www.jneuroinflammation.com/content/8/1/125
Conclusions Collectively, our results suggest that curcumin is a potent modulator of the microglial transcriptome. Curcumin attenuates microglial migration and triggers a phenotype with anti-inflammatory and neuroprotective properties. Thus, curcumin could be a nutraceutical compound to develop immuno-modulatory and neuroprotective therapies for the treatment of various neurodegenerative disorders.
 

The most aggressive anti-viral protocol we have used over the last year was Engystol (3 x days) and Viragraphis (2 x day). Our entire family is dealing we a heavy viral component. We did try Olive Leaf Extract (high dose) and Oil of Oregano and they did not fully eradicate viruses after a years use. Both herbs, OLE and Oil of Oregano created herx like reaction so assumed they helped 'at the time'.
 
Viragraphis is mostly Andrographis: Andrographis is the herb believed to have saved India from the 1918 Flu epidemic: http://en.wikipedia.org/wiki/Andrographis_paniculata
 
You can find both products from Pure Formulas on-line. Typical treatment timeframe is 3 to 6 months per one of our LLMDs. Each of our family members broke out in some type of viral response 3 to 6 weeks after starting anti-viral protocol which consisted of mouth sores, face sores, leg sores... mostly canker sore 'like'. This is just antidotal information, so please take it how you like. Both of the LLMD we see have found a huge viral component in PANDAS like children. One of our Dr.'s does ART testing and every prior PANDAS child he sees has had a viral component and most often it was XMRV plus some other viruses. Again, some Dr.'s believe like worms or mold, viruses need to be dealt with to make full advances with Lyme treatment. Our experience was that treating the viruses was as critical to our continued success as specific combinations of antibiotics, KPU, Detox, etc.
 
Our twins can not take pills so they take: Andrographis drops, Engystol and IMN-V 'Beyond Balance'. Two of our children appear to be viral free/or lower load and are no longer using anti-viral protocol.... However, we will not hesitate to retreat for a shorter period if there is an obvious virus in the household.
 
Edit: XMRV is expensive to test for at $600.00 and often results can be unreliable. It is also my understanding that many viruses are smaller than antibodies potentially crossing BBB (you can research this on-line, Texas A & M notes, etc.) and it is also difficult to filter out viruses via blood product or IVIG. I personally believe it is especially important to treat ongoing for viruses while doing regular IVIG treatments.
 
-Wendy

This is so interesting! At the Northeast conference the sinuses were mentioned as heavy strep areas and last month at the Northwest conference anal strep was brought up. Why do so many Drs consider a throat swab as definitive. We were positive only once which was our onset to PANDAS.

Below is the amount of $$$ in the Billions in fines to the Pharmaceutical companies and yet they continue to be exceedingly profitable. I feel our kids are their cash cow and there is no reason to investigate alternative therapies or the root cause of all their neurological issues! Same with adults. A neurologist that I recently heard spoke said that we enter the world with no memories so maybe that is how we are meant to exit. Seriously makes you wonder who is running/financing medical schools.
 
This is an excerpt. The link for full article is at the bottom.
 
 
I am not against medications to help our kids. We still have to use them. I am against the epidemic of kids needing it with no medical community shouting, "What is making our kids so sick?".
 
 
 
 
While a doctor can legally prescribe a drug for any use, even if it hasnt been FDA-approved, its illegal for a drug company to advertise off-label uses or encourage a doctor to prescribe it as such. This, however, is precisely what many of them do, and billions of dollars in fines have been paid as a result. For instance:
 
Pfizer paid $2.3 billion for marketing fraud related to Bextra, Lyrica, and other drugs. Charges included marketing drugs to doctors for uses for which they had not been approved and giving kickbacks to doctors and other health care professionals for prescribing their drugs.
Pfizer hired 250 child psychiatrists to market its antipsychotic Geodon, even though it wasnt approved for use in children. This was Pfizer's fourth settlement numbering in the multimillions in less than a decade.
AstraZeneca settled for $520 million for trying to persuade doctors to prescribe its psychotropic drug Seroquel for unapproved uses including ADHD, sleeplessness, anxiety, and depression. Using Seroquel for improper use has been linked to an increased risk of death.
Johnson & Johnson paid $2.2 billion for illegal marketing of the drug Risperdal for unapproved uses in children. In addition to targeting more than 1,500 child psychiatrists, Johnson & Johnson also held a Back to School Bash marketing campaign that aimed to increase prescriptions of Risperdal in children via ice-cream parties and free snacks and lunches.
In 2012, GlaxoSmithKline (GSK) plead guilty in the largest health fraud settlement in US history. The company was fined $3 billion to resolve criminal and civil liability charges related to illegal drug marketing and withholding information about health hazards associated with its diabetes drug Avandia and others, including the antidepressant Paxil, which was illegally marketed to children and adolescents for everything from depression to shyness.
Eli Lilly paid $1.4 billion for promoting its antipsychotic Zyprexa for off-label uses, often to children.
Why Are So Many Children Being Drugged?
 
The American Academy of Child & Adolescent Psychiatry (AACAP) states that up to 85 percent of children in the child welfare system meet the criteria for a psychiatric diagnosis.4 But the diagnosis of mental illness in children is far from an exact science. Modern psychiatry has expanded its reach to the point that even the most normal of emotions and mental states now fall under one labeled "disorder" or another.
 
They have been able to cleverly redefine mental illness with the use of theDiagnostic and Statistical Manual of Mental Disorders (DSM). This book is created by members of the American Psychiatric Association. You would think that diseases are put in this book after evaluating carefully executed scientific trials, but nothing could be further from the truth. Additions and changes to this manual are determined by votes by its members. This categorization is NOT based on science at all!
 
It is well-documented that psychiatric drugs in general, and atypical antipsychotics specifically, are misused across the board. Children as young as 18 months are now receiving antipsychotic drugs, despite the fact that the diseases they're designed to treat rarely develop before adolescence. So why are toddlers receiving these potent drugs? Sadly, one of the key reasons these drugs are used is their sedative effect. They're typically prescribed to control "disruptive" behavior not to treat severe mental illness.
 
It's also come to light recently that the Harvard psychiatrists who invented the pediatric bipolar diagnosis were disciplined for conflicts of interest after it was revealed they'd all received millions of dollars in undeclared drug company monies.5 Even the AACAP admits in many states there is a disproportionate number of children in foster care who receive psychotropic medication. Indeed, according to a 2010 study, an estimated 20 percent of children diagnosed with ADHD are actually misdiagnosed.6
 
Has Your Doctor Been Paid by Drug Companies?
 
Beginning in Fall 2014, you will be able to determine if a health care provider you trust is actually on the drug industry's payroll, thanks to a new federal law that entails the following:
 
 
Below is the full article link
 
 
 
http://articles.mercola.com/sites/articles/archive/2014/05/07/psychotropic-drug-use.aspx?e_cid=20140507Z1_DNL_art_2&utm_source=dnl&utm_medium=email&utm_content=art2&utm_campaign=20140507Z1&et_cid=DM44279&et_rid=513446165

Below is the amount of $$$ in the Billions in fines to the Pharmaceutical companies and yet they continue to be exceedingly profitable. I feel our kids are their cash cow and there is no reason to investigate alternative therapies or the root cause of all their neurological issues! Same with adults. A neurologist that I recently heard spoke said that we enter the world with no memories so maybe that is how we are meant to exit. Seriously makes you wonder who is running/financing medical schools.
 
This is an excerpt. The link for full article is at the bottom.
 
 
I am not against medications to help our kids. We still have to use them. I am against the epidemic of kids needing it with no medical community shouting, "What is making our kids so sick?".
 
 
 
 
While a doctor can legally prescribe a drug for any use, even if it hasnt been FDA-approved, its illegal for a drug company to advertise off-label uses or encourage a doctor to prescribe it as such. This, however, is precisely what many of them do, and billions of dollars in fines have been paid as a result. For instance:
 
Pfizer paid $2.3 billion for marketing fraud related to Bextra, Lyrica, and other drugs. Charges included marketing drugs to doctors for uses for which they had not been approved and giving kickbacks to doctors and other health care professionals for prescribing their drugs.
Pfizer hired 250 child psychiatrists to market its antipsychotic Geodon, even though it wasnt approved for use in children. This was Pfizer's fourth settlement numbering in the multimillions in less than a decade.
AstraZeneca settled for $520 million for trying to persuade doctors to prescribe its psychotropic drug Seroquel for unapproved uses including ADHD, sleeplessness, anxiety, and depression. Using Seroquel for improper use has been linked to an increased risk of death.
Johnson & Johnson paid $2.2 billion for illegal marketing of the drug Risperdal for unapproved uses in children. In addition to targeting more than 1,500 child psychiatrists, Johnson & Johnson also held a Back to School Bash marketing campaign that aimed to increase prescriptions of Risperdal in children via ice-cream parties and free snacks and lunches.
In 2012, GlaxoSmithKline (GSK) plead guilty in the largest health fraud settlement in US history. The company was fined $3 billion to resolve criminal and civil liability charges related to illegal drug marketing and withholding information about health hazards associated with its diabetes drug Avandia and others, including the antidepressant Paxil, which was illegally marketed to children and adolescents for everything from depression to shyness.
Eli Lilly paid $1.4 billion for promoting its antipsychotic Zyprexa for off-label uses, often to children.
Why Are So Many Children Being Drugged?
 
The American Academy of Child & Adolescent Psychiatry (AACAP) states that up to 85 percent of children in the child welfare system meet the criteria for a psychiatric diagnosis.4 But the diagnosis of mental illness in children is far from an exact science. Modern psychiatry has expanded its reach to the point that even the most normal of emotions and mental states now fall under one labeled "disorder" or another.
 
They have been able to cleverly redefine mental illness with the use of theDiagnostic and Statistical Manual of Mental Disorders (DSM). This book is created by members of the American Psychiatric Association. You would think that diseases are put in this book after evaluating carefully executed scientific trials, but nothing could be further from the truth. Additions and changes to this manual are determined by votes by its members. This categorization is NOT based on science at all!
 
It is well-documented that psychiatric drugs in general, and atypical antipsychotics specifically, are misused across the board. Children as young as 18 months are now receiving antipsychotic drugs, despite the fact that the diseases they're designed to treat rarely develop before adolescence. So why are toddlers receiving these potent drugs? Sadly, one of the key reasons these drugs are used is their sedative effect. They're typically prescribed to control "disruptive" behavior not to treat severe mental illness.
 
It's also come to light recently that the Harvard psychiatrists who invented the pediatric bipolar diagnosis were disciplined for conflicts of interest after it was revealed they'd all received millions of dollars in undeclared drug company monies.5 Even the AACAP admits in many states there is a disproportionate number of children in foster care who receive psychotropic medication. Indeed, according to a 2010 study, an estimated 20 percent of children diagnosed with ADHD are actually misdiagnosed.6
 
Has Your Doctor Been Paid by Drug Companies?
 
Beginning in Fall 2014, you will be able to determine if a health care provider you trust is actually on the drug industry's payroll, thanks to a new federal law that entails the following:
 
 
Below is the full article link
 
 
 
http://articles.mercola.com/sites/articles/archive/2014/05/07/psychotropic-drug-use.aspx?e_cid=20140507Z1_DNL_art_2&utm_source=dnl&utm_medium=email&utm_content=art2&utm_campaign=20140507Z1&et_cid=DM44279&et_rid=513446165

Ophelia - we've had similar issues here. Dd's PANDAS started with overnight bladder issues. We took her to a ridiculous number of specialists, but she had no UTI's or other issues. Psych drugs were no help. I totally feel it's completely part of the OCD/PANDAS thing. She's had the bladder thing since she was 9. She's turning 22 today. Thankfully, the bladder frequency isn't nearly as bad anymore, except at night, as she's never been able to sleep well. I'm assuming that it's better due to the abx she's been on.
 
I'm not sure what all your doc has tried, but it seems to be high dopamine that is aggravating the problem (but the high dopamine is caused by some infectious trigger...) Unfortunately, finding the trigger is the hard thing. But it might be worth giving this info to your doc/psychiatrist:
 
This link is from Denmark, talking about PANDAS/PANS. Note they call it "Dopamine (post streptococcal)related autoimmune encephalitis"
http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf
 
This might be good to print out for him, concerning bladder and dopamine: (Link is at end)
Enuresis Pathogenesis
 
"The proposed condition PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) has been used to describe a set of children who have a rapid onset of OCD and/or tic disorders following a streptococcal infection, with a link to other symptoms such as enuresis.[4] A broader classification of this hypothesis, PANS, has been proposed which states that some patients suffer these symptoms in response to mycoplasma or lyme disease or even viruses rather than streptococcal. PANS is an acronym for Pediatric acute-onset neuropsychiatric syndrome. This hypothesis describes children who have abrupt, dramatic onset of obsessive-compulsive disorder (OCD) or anorexia nervosa coincident with the presence of two or more neuropsychiatric symptoms. It is believed that these children experience a rise in dopamine levels as a result of a of cross-reactive anti-neuronal antibodies. The rise in dopamine can cause such side effects as enuresis, bed-wetting, and urinary urgency.[5]" http://en.wikipedia.org/wiki/Enuresis
 
You still have to find a doc willing to find and treat infections. With all your health problems, your autoimmune issues seem to be reacting to everything. (Same thing here, we just don't have the exhaustion you feel.) I know you don't tolerate meds well, but maybe your doc/psych can check dopamine levels and if high, try and get those lowered, to give you some temporary relief.
 
That being said, I can't remember what all you've been checked for. Has anyone checked for viral conditions - HHV6, EBV, etc. Has anyone checked your gut - clostridia and yeast overgrowth? Has anyone tested you for H. pylori? I think you said you've been checked for Lyme?
 
Hang in there. I so hope they can find something to give you some relief.

Samsel on contamination in meat and potatoes:
 
http://www.youtube.com/watch?v=GLyp4-Ob3Eo&feature=youtu.be

I am reading Herbal Antivirals by Stephen Harrod Buhner. Chinese Skullcap (not American Skullcap) is the number one listed herbal antiviral in this book. Numbers two thru seven are:
 
Elder
Ginger
Houttuynia
Isatis
Licorice
Lomatium

I will be the first to admit we did way to much fast food. I was always running around with 3 boys in sports at different locations always at dinner time. Thought no harm since they are active...so wrong. Wish someone explained it to me as good as Food Babe. Maybe I would of learned about no testing of chemicals and pesticides in our food supply and I would of learned about GMO's.
 
 
 
 
http://foodbabe.com/2014/05/05/what-taco-bell-isnt-telling-us-about-their-ingredients-but-you-need-to-know/

Researching around I found this very informative.
Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing!
 
 
 
 
http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus

Researching around I found this very informative.
Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing!
 
 
 
 
http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus

The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed.
 
I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past.
 
I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube.
 
Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients.
 
Augmentin also decreases Dopamine and Glutamate.
 
Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve.
 
Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases.
 
She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease.
 
Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else.
Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this.
 
The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions.
She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases.
 
As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year.
 
Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS.
 
GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah!
 
Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too!
 
The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store.
 
I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.

The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed.
 
I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past.
 
I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube.
 
Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients.
 
Augmentin also decreases Dopamine and Glutamate.
 
Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve.
 
Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases.
 
She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease.
 
Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else.
Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this.
 
The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions.
She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases.
 
As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year.
 
Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS.
 
GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah!
 
Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too!
 
The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store.
 
I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.

Researching around I found this very informative.
Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing!
 
 
 
 
http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus

Researching around I found this very informative.
Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing!
 
 
 
 
http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus

They did respond to my query regarding the FDA letter, which I guess is a good sign. And it was well-written, for which I give them some additional credit. However, not unlike what the FDA charges, there was nothing specific in the response that makes me feel convinced they're not potentially going to sell me a supplement that's supposed to contain everything I want, but not actually fulfill the order correctly/fully in terms of volume of supplements and/or the individual components. If I had access to a lab at a reasonable price, I suppose I could order it and then have it analyzed, but that's not really an option for me.
 
Here's the response:
 
Thank you for your email. We understand your concern regarding the FDA letter. Since then, we have made the corrective actions and improved our production and testing procedures. As this letter was issued in 2012, we have not received any further letters regarding this issue. With the FDA, no news is always good news. We continue to test all in-coming material and out-going finished products to ensure quality. Since 2012, we have also made changes to our in-house lab, quality control, and we've brought on board a variety of qualified employees to make changes and improvements.
 
Regarding the testimonials on our website, they are essentially blind since we are not authorized to release any customer's private contact information, so I understand what you mean. You may, however, feel free to contact any of our suppliers from the following link: http://www.vitaganic.com/aboutus/our_raw_materials.jsp. We source from US suppliers only and any material that fails to meet specifications are rejected by us immediately.
 
We do appreciate your email and we hope this helps to ease your concern. If you have any other questions, please feel free to ask.
 
Regards,
Tiffany
 
So, now I'm contemplating maybe placing an order and seeing how DS does taking the supplement?

Make an informed decision, do not trust your PCP to make it for you.
 
http://articles.mercola.com/sites/articles/archive/2009/11/14/expert-pediatrician-exposes-vaccine-myths.aspx
 
http://www.patient.co.uk/doctor/vaccines-and-immunological-products
 
From the link directly above:
 
Measles, mumps and rubella (MMR) and varicella-zoster vaccines should be avoided if immunity is significantly impaired (see 'Immunodeficiency and live vaccines', below).

Immunodeficiency and live vaccines
Live vaccines should not be given to:[2]
Patients actively being treated for malignancy (chemotherapy, generalised radiotherapy). Patients within six months of such treatment. Transplant patients on immunosuppressive drugs. Patients within six months of bone marrow transplant. Within three months of adults receiving 40 mg/day of prednisolone for more than a week. Within three months of children receiving certain doses of prednisolone (2 mg/kg/day for one week or 1 mg/kg/day for one month). When steroids and immunosuppressive drugs are being given together (the specialist in charge should be consulted). Patients with impaired cell-mediated immunity or immunodeficiency syndromes such as DiGeorge's syndrome and severe combined immunodeficiency syndrome.  
 
http://articles.mercola.com/sites/articles/archive/2014/04/26/vaccines-adverse-reaction.aspx
 
 
From the link directly above:
 
Overvaccination not only exposes people to potentially dangerous adverse reactions, but it may damage the health of the greater community. Take varicella zoster (chickenpox), for example. According to Dr. Humphries:12

"Prior to the universal varicella vaccination program, 95 percent of adults experienced natural chickenpox (usually as school aged children)—these cases were usually benign and resulted in long term immunity. This high percentage of individuals having long term immunity has been compromised by mass vaccination of children, which provides at best 70 to 90 percent immunity that is temporary and of unknown duration—shifting chickenpox to a more vulnerable adult population where chickenpox carries 20 times more risk of death and 15 times more risk of hospitalization compared to children. Add to this the adverse effects of both the chickenpox and shingles vaccines, as well as the potential for increased risk of shingles for an estimated 30 to 50 years among adults."
A young child with active chickenpox, who comes into contact with an adult who had chickenpox as a child, is giving the adult a natural "booster" that will not cause symptoms but will strengthen the adult's immunity to the disease. But since the introduction of the chickenpox vaccine in 1995 in the US, followed by chickenpox vaccine mandates in the states, there are fewer natural boosters for the adult population. Now, there is a shingles (herpes zoster) epidemic among adults – and Merck is the sole producer of both chickenpox and shingles vaccine in the US!

The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed.
 
I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past.
 
I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube.
 
Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients.
 
Augmentin also decreases Dopamine and Glutamate.
 
Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve.
 
Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases.
 
She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease.
 
Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else.
Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this.
 
The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions.
She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases.
 
As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year.
 
Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS.
 
GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah!
 
Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too!
 
The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store.
 
I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.

The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed.
 
I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past.
 
I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube.
 
Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients.
 
Augmentin also decreases Dopamine and Glutamate.
 
Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve.
 
Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases.
 
She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease.
 
Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else.
Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this.
 
The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions.
She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases.
 
As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year.
 
Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS.
 
GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah!
 
Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too!
 
The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store.
 
I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.