“So how do you stay “up” for the fight of your life when your heart is being broken on a seemingly daily basis?”

Whenever The Thinking Moms’ Revolution posts, I always read them through several times.  It’s comforting knowing that someone knows what we go through here at the Shtein house.  Even though I don’t have any Thinking Moms close by here in San Jose, I know I can always get help/support/advice through several amazing Facebook groups I belong to.  Whenever speaking about Jackson’s “autism” (or whatever toxic combination he’s  accumulated), I’m always hesitant to speak my true thoughts.  Will they think I’m crazy if I mention Lyme Disease, vaccine injury, environmental toxicity, GMOs in foods?  Instead of engaging in the long, complex conversation, I often find it easier to converse about the basics of Jackson.

We’ve been at Jackson’s ‘recovery’ now for about 8 months.  Diet change, everything organic, thousands of hours of therapy, treating for Lyme, treating for viruses, supplements galore, cleaning up our environment (changing cleaning products, shampoo, toothpaste, tupperware, everything!) Hyperbaric Oxygen Chamber, Osteopath, Homeopathy, and I’m probably leaving some out.  I would feel more comfortable standing up for what I (and the Thinking Moms) believe in if any of the above would show improvement in Jackson.  For those who ask, I do tell them the long list of things we’ve tried.  The next question they’ll ask is next is, “have you seen any changes in Jackson?  Has he progressed from any of these treatments?”  That’s where I’m stopped  in my tracks.  No.  Nothing has brought about any “holy sh*t!” changes.  Jackson is stuck at the developmental level of a 9-15 month old.

I was hopeful with the Lyme treatment, HBOT, Valtrex, and especially Homeopathy.  I haven’t given up by any means, because I know in my heart that Jackson is in there, rearing to come out, but it is hard to keep trucking and moving forward with such little success these past 8 months.  We invest a lot in all these treatments…energy, time, money and emotions.  We are still whole heartedly involved, researching, questioning, doing anything available to help Jackson.

As I read this Thinking Moms blog post (below) over and over, this quote stuck out to me:

“So how do you stay “up” for the fight of your life when your heart is being broken on a seemingly daily basis?”

This quote is exactly where I am right now.  This post couldn’t have come at a better time, to remind me of their comforting answer:

“First off, you do what we do.  You share your despair with like-minded beings who know how hard it is to be “out there.”  Secondly, you remind yourself whenever you can of the success stories, the signs that minds are changing.”

Success stories are what keep me going.  If other parents can recover their kids, then we will find a way for Jackson.  We are still at the starting line with Jackson.  This journey has been a lot slower than I had hoped, but we are staying the course.  I can picture Jackson as a healthy, typical boy.  I can picture him playing, interacting and engaging with us.  I know one of these treatments will work, and I’m not stopping until we get there.

Thank you, Thinking Moms, for leading the way and speaking the truth!

Heartbroken in Brooklyn

I live in Brooklyn.  New York.  You know, one of those states that got pounded by Hurricane Sandy.  My favorite grocery store was flooded long before the peak of the “storm surge” that did so much damage.  And I’ve been studying my little heart out for a certification exam that I did not get to take last Friday, because there was no easy way to cross the river into Manhattan.  So I’m not in the best of moods at the moment, and, consequently, not feeling much like writing.  I like writing when I feel “fired up.”  Not only do I not feel “fired up,” one could say that I feel “dragged down.”  Which is probably why the topic on my mind is one that “drags down” more of my special-needs parent friends than almost any other: the heartbreak of watching people they care about go through virtually the same experiences, despite the warnings they have received.

If you’ve been reading this blog for any length of time, you know that my friends the Thinking Moms are very generous people.  They are generous with their hearts, their time, and — perhaps most of all — their stories.  And sometimes it seems like every other day one of them reports a story of some friend or relative who either just “got the diagnosis,” or will get one as soon as the evaluation is complete. Now that would be difficult for any friend or loved one to hear, but it can be downright heartbreaking for these warriors.  Why?  For the simple reason that they are “out there” on the front lines sharing their stories – difficult as it is – every day just so that other families will not have to go through the same things they’ve been through.  (Reading that statement back, it occurs to me yet again that I am an understater: “Difficult”?  Hah!  Try “gut-wrenching,” or “insanity-inducing”!)  And these people didn’t listen.  The George Santayana quote, “Those who cannot remember the past are condemned to repeat it,” is as true when it comes to the development of autism as it is to every other type of event in history.

Why don’t people listen?  We’ve heard all kinds of reasons.  “My doctor said it’s very safe.”  “The ER resident said the febrile seizures had nothing to do with his shots.”  “My doctor says autism is genetic.”  “That doctor in England was disgraced.”  When it comes down to it, these people simply didn’t believe us.  Why didn’t they believe us?  People don’t believe us because they don’t want to believe us.  Not because they’ve done investigation of their own — most haven’t done anything beyond reading the mainstream news or asking their pediatrician a question or two.  Not because we’re not telling the truth.  Not because we’re wild-eyed, hysterical crazies.  These people are our family and friends.  They know us.  They know we’re intelligent, educated, loving and capable human beings and still they don’t believe us. That’s a bitter pill to swallow.  If they don’t believe us, who will?  They don’t want to believe us because it’s easier to believe their doctors.  It’s easier to believe the mainstream press.  It’s easier to go along with the prevailing wind than to fight it.  And it’s easier to go along with the prevailing wind if you believe what you’re doing is right, whether or not that belief bears any relation to reality.  Believing what we say would take a massive shift in their worldview and they’re just not ready for that.  Until it happens to them.  And then – suddenly – they are!

Unfortunately in one respect, the ranks of people whose eyes have been opened are growing by leaps and bounds.  I say unfortunately because the main reason why is that there are now so very many sick children.  A 2010 survey said that one in four parents now believe that vaccines cause autism.  (Don’t bother with much of that article.  Most of it is utter crap.).  Despite the steady stream of misinformation in the mainstream press (see “Critical Thinking 101″ ), people — large numbers of people — are starting to pay attention.  Most have not felt strongly enough to defy their pediatricians when they get stroppy or strident, but many have postponed vaccines until their children are older than the CDC-recommended age.  Many are denying the more obviously useless vaccines (see“Birth of a Warrior” ), and many are confessing that they suspect the US vaccine schedule of being overloaded and unsafe for children.  (Heck, even staunch vaccine supporters will admit they have doubts about that one!)  My friends and I get frequent requests for information on how to obtain philosophical or religious exemptions from vaccination. All in all, huge progress and something to cheer about.  The paradigm is shifting.

That’s the good news.  The bad news is that this shift is going to take a while and it’s going to be uncomfortable for people. So they’re going to be grumpy.  And they’re going to blame the messenger, because that’s what people do when they’re grumpy and they get bad news.  And, yep, you guessed it:  The “messenger” is us.

Personally, I believe that what we are doing here is extremely important, that changing the prevailing health paradigm is one of the most important issues of our time.  This country must address its dismal failures with regard to the health of its most vulnerable citizens — and soon  — or we are going to lose everything that we have come to expect as Americans.  Already 43% of our children face chronic illness, more than 50% if you count obesity — and you really should.  We’re losing ground on life expectancy. Most seniors are on dangerous combinations of prescription drugs, and almost half of Americans 85 and older show signs of Alzheimer’s.  Nearly two percent of 12-year-old boys are on the autism spectrum.  Not even the biggest champion of neurodiversity could challenge the fact that if that number continues to grow like it has been (And — please — can we all stop pretending that it’s “unclear” whether or not the rise is real or it’s due to “better diagnosis?  Ask any teacher with more than ten years experience:  The rise is all-too-frighteningly real.), it’s going to cost this country more than it can afford in therapies, supplements, drugs, lost manpower, and lost income in future years.

So how do you stay “up” for the fight of your life when your heart is being broken on a seemingly daily basis?  First off, you do what we do.  You share your despair with like-minded beings who know how hard it is to be “out there.”  Secondly, you remind yourself whenever you can of the success stories, the signs that minds are changing.  And if you can’t remember, that’s one of those things those like-minded beings tend to be really good at reminding you.  When you have to, you take a break from dealing with rabid vaccine apologists on mainstream media stories that you know have gotten it all wrong because you went and read the study that the story was based on.   And you report everystory you can find of someone who listened and whose child is now recovered or nearly recovered, or better yet, never even got sick.  I’ll be honest with you:  We here at the Thinking Moms live for those stories.  They keep us going.  You should see the sobfest that goes on behind the scenes in our Facebook group when someone posts one.  That’s when we know that what we’re doing is important and that we’re going to win.  But it’s going to be a long haul and we’re going to need every bit of help we can get.

So… do us all a favor!  Help us keep energized to keep fighting.  Give us your best success story in the comments.  I guarantee you, you will make more than one person’s day.  And you’ll give us the injection of energy and enthusiasm we need to keep going.

~ Professor

 

P.S.  It’s also good to honor those heroes who have already been at this sometimes thankless job for years, people like Lyn Redwood, Elizabeth Birt, Bernard Rimland, Rebecca Estepp, Mark Blaxill, Dan Olmstead, Ginger Taylor, Marcella Piper-Terry, Cynthia Cournoyer, David Kirby, Louise Kuo Habakus, Mary Holland,  Michael Belkin, Anne Dachel, Ed and Teri Arranga, Barbara Loe Fisher, Lisa Ackerman and Katie Wright.  Our own Blaze recently honored Lujene Clark (link Blaze’s blog).  Who else would you like to thank?

When Will Autism Be Taken Seriously?

Dachel Media Update: 11/8

Huffington  Hannah Brown wrote to President Obama about autism.  I posted my “facts” that Obama should know about.Mr. President,

I want you to know the following five facts about autism:

1. Autism is an epidemic.

One in every 88 children with autism isn’t the result of better diagnosing. We have some of the sickest children on the planet with epidemic rates of autism, diabetes, learning problems, severe allergies, and asthma—to name only a few.

2. We need a simple comparison study of never-vaccinated/fully vaccinated children.

The claim of a link between vaccines and autism is the most heated controversy in medicine. Evidence is overwhelming that an ever-expanding vaccination schedule is behind the exponential increase in autism. Those who deny any link don’t have this science to back their claim.

  1. The concomitant health problems that come with autism, including bowel disease,

seizures, and sleep disorders are largely ignored by mainstream medicine.

Autism is a neuro-developmental disorder that affects the entire child. All their health issues have to be recognized.

4. Autistic children can be recovered.

There are bio-medical treatments that can greatly improve the health of children with autism, including diet, supplements, chelation, hyperbarics and more. There are stories of tremendous improvement and even a loss of symptoms with these treatments. Sadly, these interventions are largely ignored by mainstream medicine.

5. A generation of autistic children is aging into adulthood with no place to go.

A tsumani is approaching. Autism needs to be addressed as a national health care emergency. America will be paying millions for each child. The total cost is mind-numbing.

Anne Dachel, Media editor: Age of Autism

Autism is Encephalopathy

From http://gianelloni.wordpress.com/

A Different Type of Orphan…

Posted on November 4, 2012

Today is Orphan Sunday. I thought this post was very fitting for the day.

For the past few months, our adoption has consumed me. It has become a new passion of mine to advocate for the orphan; God’s children. And we cannot wait to bring our new son home! Most of you who know me well and read this blog, also know that I have a passion to spread truth and awareness to a very different, but just as real and prevalent issue. I find it very interesting that this other passion of mine also deals with “orphans”. That is what I want to write about today. These children might not be orphaned by a mother and father, but they have been orphaned by a medical system and a government that refuses to acknowledge who they are.

“Speak up for those who cannot speak for themselves; ensure justice for those being crushed” -Proverbs 31:8

Who are they? They are the 1 in 88 (really the 1 in 29), projected to soon be (in the year 2022), the 1 in 9. The prevalence rate has gone from 1 in 10,000 in the early 1980s to 1 in 88 in 2008. Who are they? They are the children of a manmade epidemic. Also known as AUTISM. Medically ill children.

I do not have a child with autism. But I am surrounded by the autism community. I have shared many times how they have touched my heart and I have fallen in love with these mothers. I’ve written many many posts about these amazing mothers and have become an outspoken advocate for the autism community.

Why?

Because I care. I care about the children who are abandoned. Ignored. Not cared for. Belittled. Ridiculed. And ultimately orphaned.

I wrote a piece recently titled I Only Want Things to Make Sense, please take a moment to read it. And ask yourself, does this really make sense?

When you have many friends whose children fit into the Autism category, you read what they say. Sometimes I think everyone sees my fb newsfeed and understands what caused this autism epidemic. Read that post (HERE). But the reality is, most people do not truly understand what is happening to an entire generation of children.

My dear friend LJ Goes is a writer, researcher, advocate, and autism mother. She holds more “degrees” than any doctor or scientist I know. She is the co-founder of The Thinking Moms Revolution, Managing Partner at the Misuta Project, contributing writer for Age of Autism, among many other things.

When I started the Lioness Arising Series, LJ was the first mother I highlighted. She is fierce and honest and a world changer. She has nothing to loose. None of the autism moms I know have anything to loose. They don’t “wonder” what caused their child’s autism. They. Know. Please take the time to read the stories of all the Lioness Arising Mothers stories that I’ve shared. You can find them (HERE)

Here’s what I’ve learned from the Autism community: Autism is a made up word.

We have been led to belief that autism is “behavioral”. You know the kids that stare into space and just need a bunch of therapy. That is NOT autism. These children are cognitively present. Entirely “there.” Not autistic. Harmed. Because “autism” is a made up word with no medical definition. No markers or genetic anomalies that identify it’s presence. It is environmental. It is man made. It is an epidemic. And it’s medical. AUTISM IS VACCINE ENCEPHALOPATHY.

Vaccines cause encephalopathy, exaggerated auto-immune response, methylation and metabolic failure. They do these things and the world calls it autism. The observers, the scientists and real doctors…investigate and call it what it is. A crime against humanity.

LJ’s son has AUTISMM:
Auto-immune dysfunction
Undiagnosed PANDAS (finally caught by his 6th physician)
Titres that indicate no antibody production for Polio (for which he is fully vaxxed) and “off the charts” production of varicella and measles.
Inflammation of the brain and bowels.
Sensory processing disorder brought on by
Metabolic and Methylation failure.

People are constantly trying to minimize autism, blame the epidemic on better diagnosis, or paint the picture that it’s not all that bad. What I love and admire about LJ is that she is always transparent in sharing what autism truly is. I want to share part of a letter LJ wrote as a response to a parent who tried to dismiss her son’s autism and make it a vax vs. anti-vax issue.

“My son has a medical illness recognized by physicians and research scientists all over the country. I guess when they keep giving kids with such different symptoms the same diagnosis I could see where it would get confusing. The time you spend snuggling with your princess, I spend trying to keep my precious son from harming himself. I have to prepare his food from scratch daily. He is on a special diet due to the severity of his bowel disease, so I am in the kitchen quite a bit. He loves to jump on our counter tops. In fact, over Christmas break he reached an all time climbing high, 117 times in one day. Yesterday, while I was trying to peel apples, he sat in the sink and turned on the garbage disposal. He is 5 and not yet potty trained. He is abusive to himself, wakes screaming and writhing in the night. He is in excruciating pain.

My son is a glorious gift, and I treasure him. However, several times a day, he will hit me, and himself while screaming “Stop, please mom, stop!” While he tears at his midsection and pounds on his head. I bear witness to his suffering daily.

I now have a 680 page medical dossier that confirms the majority of his illness were brought on by vaccines. Vaccines–that–I am not sure you know–are held to no standard of accountability. Vaccine manufacturers do not answer to any higher power or governing body for the products they produce. When harmed by one (or in my son’s case, 9) the taxpayers assume the cost.

I guess, the differing nature of our children’s autism, and the overwhelming body of non-pharma funded science that shows the link between vaccines and “autistic-like” symptoms, as well as your desire to reduce this issue down to vax vs. anti-vax, begs correction.. This is not about infectious disease, at all. It is about our mainstream medical system’s failure to treat, recognize and research the medical needs of our individual children. I am assuming since you are reducing this complex data down to “vax” vs “anti-vax” you are making the assumption that vaccines do indeed cause autism? Because, that is what that argument asserts. A live, brain-damaged inflamed, sick child, is better than a dead one. We, the researchers would assert, all our childrens’ lives are valuable. Our children’s individual health needs are also more valuable than pharmaceutical profits. That, is the real argument”

Often signs of vaccine injuries start with symptoms in the bowels…. chronic diarrhea and/ or constipation. Digestion issues. Reflux. Other signs of possible vaccine injuries include turning in of the the eyes (lazy eye), skin conditions, chronic ear infection, food allergies/ seasonal allergies, and respiratory illnesses. Of course this list is not at all inclusive but they are what million of Americans are suffering from , especially children.

They say high-pitched screams, fevers and swelling at the injection site are all common, harmless, insignificant side-effects of responsible, preventative medical care. Don’t listen.

When you bring a healthy 2 month old into the pediatrician for their first round of vaccines and they become a completely different baby (screaming, irritability, sickness), please don’t think this is “normal”. These are called warning signs. Please read this post (HERE)

1 in 88 children with autism is NOT normal.

There have been 127 genetic studies since 2006 and we are no closer to finding a cause. All the while hundreds upon hundreds of thousands of families are screaming truth and an entire generation of children are being injured.

And it’s not just Autism.

1 in 3 children are overweight
1 in 6 children have learning disabilities
1 in 9 children have asthma
1 in 12 children have ADHD
1 in 25 children have food allergies
1 in 100 children suffer from seizures
3-5 in 100 children have birth defects
1 in 88 children have autism
1 in 450 children have diabetes
1 in 6,000 children have cancer
50% of children are chronically ill or overweight

Do you know who the parents are of the children who fit into these statistics? Just parents who vaccinated and learned the truth. Watched their kids disintegrate before their eyes. Thousands and thousands of them.

We can’t ignore them forever. Because one day, their children, the ones who have who have been orphaned by our governments refusal to acknowledge them, one day these children will grow up. And they will have a story tell.

Autism recovery is real. Autism is reversible. Autism can be healed and treated and it can also be prevented. Our government knows this. All you have to do is read the 262 pages of transcripts from the Simpsonwood conference, and you would know this too.

How long will we allow these children to be orphaned by our medical system and government?

See this isn’t about infectous diseases anymore. It’s not a vax vs. anti-vax stance. It’s about a medical system (pharma) that says you must get vaccinated so you don’t die, but then when you become injured, sick, or dead from the vaccine, that same medical system can’t be held accountable & they wont acknowledge it. Mainstream media can’t cover it, truth is continually suppressed, and an entire generation of children and parents are being silenced.

Why do we allow this?

THE HEART OF A MOTHER: ‎”I didn’t ask for this fight. None of us did. We followed the rules. Did what we were told. Didn’t question authority. Trusted the “experts”. Showed up on time. Held them down. Over and over and over. Gave the antibiotics. Ignored our guts. Loaded them up on Tylenol. And chalked it all up to coincidence. We didn’t do anything to deserve this. Most certainly our children didn’t either. But I’ll be damned…I’ll be DAMNED…if I allow my daughter’s life and those of her generation like her…to be discounted, chalked up to the “greater good”, and poisoned at the hand of those she trusted without someone, someday being held responsible for what they did. I can forgive. I cannot, and will not, ever forget. And I cannot and will not ever give up.”

I HOPE YOU’VE DONE YOUR RESEARCH? 

 

Jackson Update

I wish I had something new and exciting to tell you guys out there, but we’re continuing our “being patient” stage.  We’ve been at Homeopathy now for 3 months, and it seems like we haven’t encountered the right remedy yet.  I’m not willing to give up on Homeopathy anytime soon, especially since our well known Homeopath is confident he will find the right remedy match for Jackson.  We have another appointment with our Homeopath on Thursday to continue our discussions about Jackson.  We continue to give him his methyl B12 shot 3 times a week, his supplements, green juice, organic gluten free, casein free diet, and a whole lotta love.  He is still the sweet, snuggly, happy, curious little 3 year old, but no huge gains.  He loves when I sing with him,  jumping on our trampoline, exploring books, playing iPad, following Sophie, and being blown by the leaf blower:)

Jackson is still at his county Autism preschool class daily from 8am-1:30pm.  It’s tough to be so out of the loop with his schooling.  I was used to being continuously involved in his at-home ABA therapy (4 hours a day), and now, he’s at school with his teacher, aides and classmates.  I do communicate with the teacher, but it’s not the same.  I’m not exactly sure if the class is meeting his needs and how he spends the hours in his school day.  We have another IEP coming up next Monday, so it’ll be nice to get an update of how Jackson’s doing and exactly what services he’s receiving.

While school/therapy is important, what’s most important at the moment is figuring out the right remedy and figuring out how Jackson is so toxic.  I’m coming to realize it’s probably a combination of things…Lyme Disease (who knows??), vaccination injury, environmental toxin exposures, GMOs, just not sure.  It’s still mind boggling to me how Sophie came out so healthy and Jackson is so sick and damaged.  We have not given up.  If anything, I’m more interested now in Homeopathy and different treatment options for Jackson than ever.

I don’t remember if I ever reported back about Jackson’s 24 hour EEG, but his results came up normal…no seizures.  From other blood tests the Neurologist ran, things came up clean.  No thyroid problem, nothing.  From the outside, Jackson seems like a healthy, growing boy.  On the inside, something’s not connecting and he’s still very delayed, nonverbal and in need of constant assistance.

We did transition Jackson from his crib to a big boy bed.  He’s cut out his nap, but sleeps through the night from 7:30pm to 6am.  He has made huge progress navigating his iPad.  He can start, stop and pick different apps and movies.  He knows where we keep the iPad, so he’ll go get it and start what he wants.  He’s obsessing over it a little, so we have to limit his iPad time.

The latest adventure we’re embarking on is an Autism Dog.  (As if 2 kids, 2 dogs and 2 cats aren’t enough;)  A couple weekends ago, we went to Yuba City to meet with a company called Pawsitive Solutions.  They train dogs to become service dogs for children with Autism.  Puppies are trained for a year, then assigned to a family.  Essentially, the dog would help keep Jackson safe during outings (it would know his scent and be able to find him should Jackson run off), would sleep with Jackson, and go anywhere Jackson goes (excepts school).  We had a good meeting with them and got a lot of questions answered.  We recently signed the contract, put a $900 deposit down and will begin fundraising the remaining $8,100 due.  I’ll be posting more about the Autism Dog once Misha and I devise our fundraising strategy.  Being interested in an autism dog is by no means admitting defeat to Autism.  We will continue to do all we can and explore every avenue to help Jackson progress.  My dream is that Jackson will start progressing and progress so well that we’ll be left with the smartest, most loyal dog to be part of our family.

    

   

Be informed: Flu Shot

The Thinking Moms Revolution has a newsletter!   It’s full of excellent information, including the Flu Shot info below:

To Flu Shot or Not To Flu Shot? The Rev Asks You To Do Your Homework

Hi All!  The Rev here!  It is indeed that time of year again.  Signs are posted in every establishment, grocery store, school and pharmacy telling you to “Be smart!  Get your flu shot!”  Ultimately, of course, the decision is up to you.

We here at the Thinking Moms feel VERY strongly that a person’s right to decide what they do and do not put into their own body is a fundamental freedom.  So, as the powers that be close in on you, your family, friends, bosses, buddies… warning you that you must take care of yourself, please make sure you are informed!  A plethora of data indicates that, at best, the flu shot is a bit like a trip to Vegas.  You may get sick, you may not.   They may have chosen the correct strain for this season, perhaps not.  Either way, all the adjuvants that come along for the ride carry great risks that are often glazed over by the mainstream medical community.

In this recorded phone call to a vaccine maker, the caller asks questions about mercury and how well the flu shot actually works. The answer is — perhaps unintentionally — a bit more honest than what you might hear from their ads.

To receive the Thinking Moms newsletter, go to their website and subscribe (free) to their blog.

CDC Chief Admits that Vaccines Trigger Autism

After receiving a notice from Sophie’s school that she needs her 3rd Hep B shot, I went right in to the nurse’s office and asked to sign the waiver.  As healthy our amazing little girl is, I’d like to keep her that way.  She will not be receiving any more vaccinations (including flu shot!) where god knows what is shot into her body.

Do I believe that vaccines can contribute to Autism in children who are susceptible?  Without a doubt.  Are vaccines the only culprit?  No.  We’re navigating unchartered waters in our chemically enhanced, genetically modified environment.  We are being exposed to things our parents and prior generations didn’t worry about.   Our kids who have been damaged are a wake up call to our society that something needs to happen.  The Autism rates are only increasing.  Breaks my heart that every day, more and more kids are suffering.

Taken from: http://adventuresinautism.blogspot.com

Parents have figured it out…when will our government step up?

Thinking Moms Interview

If you have/know a child with autism, ADD, asthma, learning disabilities, this is a must see interview:

What’s making our kids sick?  Our American culture.  I believe it!

http://www.thinkingmomsrevolution.com

Jackson update to come later this week.  We’re here, continuing the journey, battle, the day-to-day ups and downs.

Patience

This past month has been tough, mostly in the sense that I haven’t been able to do anything for Jackson.  This past year, I have been researching beyond anything I’ve ever done.  Supplements, treatments, doctors, Lyme Disease, Mitochondrial Disease, Hyperbaric Oxygen, Gluten Free/Casein Free, ABA therapy, school district preschool, Speech Therapy, Occupational Therapy, Osteopathy, Homeopathy, Genetically Modified Organisms (GMOs), the list goes on and on.

With Homeopathy, they key is patience, and waiting for the remedies to do their thing.  We go back to our Homeopath on Tuesday, and I’m thinking he’ll see Jackson’s lack of progress and be changing remedies since we have not seen much progress this last month.  I am not ready to give up  Homeopathy.  I wholeheartedly think our amazing Homeopath is capable of helping Jackson.  For the next 6-8 months, Jackson is in his hands and we’ll see what happens.  I’m not thinking beyond that now since all my positive energy is in Homeopathy now.

My passion is now is getting all the GMOs out of our house.  Whole Foods is my new best friend, and Organic is the name of the game.

For those who still need proof that GMO foods are a danger to our health unlike any other, watch this YouTube video about independent research on GMO’s recently done in France. This should also make us think twice (or more) about eating the meat of any animal fed these foods: http://youtu.be/Njd0RugGjAg
For those of you that have not yet watched Jeffery Smith’s important new documentary “Genetic Roulette” I can’t recommend it strongly enough.

Nagalese and GcMAF

I mentioned in my last post that Jackson’s nagalese level is an extremely high 3.4, with the normal range being 0.3-0.9.  His high number re-confirms the viral theory that our LLMD suggested.  The treatment for his obscenely high nagalese level would be GcMAF injections bought from Europe.  This therapy is a possibility in the future, although for now, we are 100% committed to Homeopathy.  GcMAF injections are definitely in the back of my mind and on my list of things to try in the future should our path journey that way.  Dr. Bradstreet explains about GcMAF and treating Autism:

Better Health Guy, http://www.betterhealthguy.com, documents his journey through GcMAF injections on his website.  His nagalese levels started at 2.9 and lowered to 0.6 through GcMAF injections.

From http://www.betterhealthguy.com:

GcMAF (Gc protein macrophage activation factor) is an immune-regulating compound from Europe that may have benefit for those of us struggling with immune system health.  It has been used in HIV and cancer for several years.  More recently, doctors and researchers have been considering GcMAF for use in patients with illnesses that most of us will recognize.

From gcmaf.eu, “In its role of immune system regulator, research shows GcMAF can reverse other diseases that attack the immune system like Autism, CFS, XMRV, Lyme disease, Aids, HIV, Fibromyalgia (all of which we’ve begun to have success with ourselves), osteoporosis, Hodgkin’s, Lupus, MS, Parkinson’s, various bacterial and viral infections and various types of Immune dysfunction.

I first heard about GcMAF almost a year ago.  At the same time, I had first learned about “nagalase”, a blood test that is used to in part determine whether or not one might be a candidate for GcMAF therapy.  Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage.  As a result, macrophages are not “activated” and our immune systems are not able to properly respond to invaders.

Here are some points that I have learned thus far on GcMAF:

  • GcMAF has reportedly been tested more for safety, purity, etc. than other human blood products.
  • Macrophages are cultured, destroyed, and the GcMAF receptors are purified.
  • Treatment is via injection 1x/week for 8-20 weeks.  Dose is titrated initially to avoid exacerbation or Herx responses as much as possible.
  • A commonly used dose is .25ml once weekly (a 2.2 ml vial should last 8 injections).
  • The primary test used in looking at whether or not GcMAF may be a reasonable intervention is nagalase.
  • Nagalase inactivates macrophages.
  • I personally would NEVER consider this option without having a baseline nagalase test.  Normal is < 0.95.  Mine was 2.9.
  • The practitioner I worked with suggested that 2.9 was in the range of someone with HIV or cancer in terms of the impact on the immune system.  I’d like to hear from others in the Lyme community as you get test results as well to see if there is a pattern of elevated nagalase in those with Lyme disease.  Whether or not Lyme itself has anything to do with nagalase elevation is something I have not been able to find anything on.  We certainly all have underlying viral co-factors that are likely in play as well, but I suspect that Borrelia may also play a role in nagalase elevation.
  • In healthy college students, a nagalase 0.4 is not uncommon (the lower the better).
  • At 2.9, my practitioner was surprised that I did not have more cognitive deficits such as memory loss and other cognitive issues.
  • It has been suggested that ongoing antimicrobial therapy without a working immune system is like leaving the house with the door wide open inviting burglars in.  By using GcMAF to activate macrophages, nagalase drops, and one may regain a functional immune system.  The door is then closed to further invaders and we may no longer serve as a microbe hotel.
  • Maintenance therapy should not be needed once the immune system is once again properly functioning.
  • Activated macrophages only remain active for 7 days so any negative responses are generally short-lived.  That said, some people do have strong inflammatory responses that are not believed to be typical die-off reactions.
  • It has been indicated that in some cases, other medications may be needed in order to manage the inflammatory response.  This is another reason that one needs to be working closely with a knowledgeable practitioner before considering GcMAF in my opinion.  In the CFS and GcMAF world, this more severe form of a die-off reaction is called IRIS.
  • VDR genetics do not seem to play a role in predicting response as earlier thought according to one practitioner that I have spoken with. That said, Vitamin D levels do correlate with the positive response rate of GcMAF.  Thus, Vitamin D supplementation may be required in order to optimize outcome.
  • Other than die-off reactions or activation of symptoms (inflammation), no other side effects are generally expected.
  • Nagalase should be monitored every 1-2 months while on treatment to determine the required duration of the therapy.  Target nagalase after treatment would be 0.4 to 0.6.
  • Elevated nagalase has a profound detrimental effect on the immune system.  Elevated nagalase is often presumed to be related to microbes of viral origin or cancer.  Viruses that are nagalase producers open the door to chronic infections.
  • Hemagglutinin contains nagalase and is also found in flagella of some bacteria so it could also be the case that some bacteria may produce nagalase.
  • Parents with ASD children also often have elevated nagalase.
  • A practitioner I spoke with likened Lyme disease to a “peat moss fire” burning below the surface.  Activating macrophages should help to deal with the fire.
  • GcMAF should be helpful in dealing with other infections that are not of viral origin; for example, Borrelia, Bartonella, and other infections commonly associated with Tick-Borne Infections (TBIs).  GcMAF is active against many cancers and many different kinds of microbes.
  • Neopterin is another test that is sometimes used as an indicator of immune suppression.  As macrophages become activated, neopterin may rise and later fall.  If one is in the normal range for neopterin and has an immune-related illness, this could be an indication that the immune system is suppressed and not responding appropriately.
  • People with autoimmune conditions can generally use GcMAF.  However, GcMAF may be contraindicated in people with Multiple Sclerosis.
  • Reduction in nagalase is generally seen early in the course of treatment; within the first 3-6 weeks.  In some studies, nagalase dropped by over 50% in less than six weeks.
  • Cancer patients may initially feel as bad on GcMAF as they do on chemotherapy, but often feel much better after the first month.
  • Anti-inflammatories may limited the effect of GcMAF.
  • Enzymes and biofilm-reducing supplements may have a negative impact on GcMAF therapy and may be best avoided.  It is still too early to know what the impact may be, but one practitioner I spoke with feels that it is best to avoid these.
  • One should not be on any immune-suppressing agents while on GcMAF as the immune system must be partially functional in order to respond appropriately to the treatment.
  • A common pattern is to see elevated lymphocytes, high nagalase, and low NK cells.  Once nagalase drops, it may be the case that NK cell function could be positively impacted.  CD57 is a type of NK cell.  It is too early to know if this proves to be true, but it is one of the things I’m quite interested in.
In November 2011, I listened to a presentation by Dr. Kenny de Meirleir on GcMAF.  This video is an absolute must-watch if you are considering GcMAF.  You can find it here.  A few of my takeaways from watching this presentation include:
  • With compromised immune activation, increased nagalase cuts off the conversion to GcMAF – result is a deglycosylated Gc protein that cannot activate macrophages.
  • If you have increased nagalase, you have less GcMAF and your Gc protein is not effectively transferred into GcMAF.
  • Nagalase is part of the gp120 enzyme in HIV.  HERV’s or other viruses active in cells may produce nagalase.
  • Several intestinal bacteria are producers of nagalase.  Editor’s Note: I found this connection to be quite interesting; the gut is big.
  • Similar to HIV, CFS patients have many infections and reactivate endogenous herpes viruses – EBV, CMV, HHV-6, HSV-1, as well as Herpes 7.
  • Healthy controls have very low nagalase enzyme activity.  Normal people do have some, but it should be very low.  There is a clear difference in those with pathology.
  • 395 CFS/ME patients – average nagalase in Kenny de Meirleir study was 1.72 with range of 0.28 to 4.0.  Controls had < 0.69 with range of 0.35 to 0.68.  Only 12/395 had normal nagalase levels resulting in 97% having increased nagalase activity.
  • Dr. Cheney did a small study of 50 patients.  Average nagalase was 3.0 with range of 0.8 to 6.7.  He has a much sicker patient population than de Meirleir.
  • Origin of nagalase in CFS may be: retrovirus?, herpes viruses, intestinal bacteria, HERVs.
  • Find Lipopolysaccharides (LPS) in the blood from gram negative intestinal bacteria (less so from gram positive bacteria).  High LPS suggests increased intestinal permeability or leaky gut syndrome. LPS is one of the most immunogenic substances in the body.  Extremely ill and moderately ill patients have increased circulating LPS and thus leaky gut syndrome.
  • Altered intestinal flora and changes in gut permeability may be a major factor in this entire clinical picture.
  • GVDR-Fok1 and GVDR-Bsm1 polymorphisms in CFS – response to GcMAF is dependent on the VDR gene polymorphism.  VDR is involved in skeletal metabolism, modulation of immune response, and regulation of cell proliferation and differentiation.  Many CFS patients have osteoporosis. Editor’s Note: The VDR connection to GcMAF efficacy seems to be an ongoing topic of debate.
  • In 185 patients looking at VDR genetics, FF/bb is a higher responder.  Ff/Bb is a moderate responder, and Ff/BB is a low responder.  de Meirleir takes VDR genetics into account when giving and dosing GcMAF.
  • Africans are higher responders and Norwegians and Scandanavians are lower responders.
  • GcMAF and LPS activate macrophages.  Majority of CFS patients have increased bacterial transfection from gut to blood. GcMAF stimulates macrophages through a different mechanism than LPS without the negative effects of LPS.  LPS and GcMAF cannot stimulate macrophages simultaneously – it is one or the other.  Affinity of macrophages for GcMAF is higher than for LPS.  GcMAF will induce a “good” phagocytosis without the bad IL-1 and TNF-alpha release.  “Bad” macrophage activation by LPS is diminished by the competitive action of GcMAF in the macrophages.
  • de Meirleir uses 100 nanogram (1/10,000 of an mg) in 1ml serum.  Editor’s Note: This is different than GcMAF.eu potency which is 100ng in .25ml
  • Can be done IV or SC once per week at dose of 25-100ng per week.  The Dose depends on how activated the immune system is and the VDR genetics.  If a patient is a low responder genetically and has low activation of complement in the immune system, the dose might be 100ng per week.  Otherwise, much lower dosages may be used.  Treatment duration is 5-40 weeks with 15 week being the average.
  • Symptoms such as fatigue, sleep quality, pain, neurocognitive function, recovery/less payback, digestive problems, and orthostatic intolerance improved in over 50%.  Of 108 patients, 68 of these had noticeable improvement.  Of these, 44 of the 68 had decrease in fatigue.
  • Risks – GcMAF is natural and normal people produce it.  T-cell activation in patients with a Th1 -> Th2/Th17 shift could in theory develop or increase auto-immunity.  That said, it has not happened once in his cases.  He did have a few people that developed autoimmune thyroid conditions; but that is not uncommon in the normal patient group that he sees.
  • Patients with increased TGF-b1, high IL-6, high ANA, and thyroid antibodies are temporarily excluded.
  • Overstimulation with GcMAF can lead to IRIS – immune reconstitution inflammatory syndrome.  IRIS has been seen in the past in HIV.  In HIV, this is rarely discussed given the severity of the condition they are treating.  IRIS occurs when the immune system is heavily damaged by viruses other co-infections are present.  The immune cells start to regenerate and the immune system produces an exaggerated response to the co-infections.  It is not the GcMAF itself but the result of significant co-infections.  IRIS has been replicated in mice.
  • 20-30% of GcMAF CFS patients experience IRIS.  It is more common in those with co-infections and in those with activated T-cells or a low number of T cells.
  • de Meirleir monitors IRIS with C4a, cytokines, CD25, and HLADR+.
  • Attempts to prevent IRIS with a broad screen for fungal, viral, intracellular bacteria, and parasites.
  • Start with a low dose and titrate up slowly.  In 7 patients that had IRIS, de Meirleir found active Babesia.
Current Status

To learn about my personal experience and response to GcMAF, visit my GcMAF Log page.

Nagalase Testing

Health Diagnostics and Research Institute
5406 Bordertown Ave
Suite 2300
South Amboy, NJ 08879
732-721-1234
Lab@VitDiag.com

Web site: http://www.europeanlaboratory.nl/

The cost of testing is about $65.

Resources

There are numerous resources on GcMAF available.  Rather than try to go into great detail here, as I am still learning about GcMAF myself, I have provided some additional resources below that have significant information on GcMAF.

If you have experience with GcMAF, I’d appreciate hearing from you.  If you have additions or corrections to the information here or additional information that I should share here, please Contact Me.

Note: I am not an expert on GcMAF therapy.  This information is being provided to share my personal experience with this option only.  All medical decisions should be discussed with your doctor.