Tribute to Andy Cutler…..

1956-July 29, 2017

This is going to be the hardest post I’ve ever had to write. My heart is heavy, I am in shock. I am deeply profoundly… sad. It feels like the air has been sucked out of the world.  We have lost a very dear man, a hero, a true warrior in the autism and mercury poisoning community.

We lost the man who saved my son from autism! The man who led the charge in safe chelation. The man who save ME from mercury poisoning.

I feel as part of Andy’s legacy I need to talk about the man I knew.

Andrew Hall Cutler, PhD, or as we fondly call him, Andy, the well-educated Princeton man who knew so much about so many things. He was the man behind the frequent dose chelation movement. Heck, he invented it!! That’s why it’s called ACC or Andy Cutler chelation. He was mercury poisoned himself by amalgam fillings and found that mainstream chelation was getting it all wrong. It was making people worse.  Rather than accept that, he led the charge to develop a safe protocol. He chelated himself safely and went on to teach the rest of the world.

Without Andy, I would still be very sick and I would not be sitting here writing this post today. Let me tell you about the man I knew.

I began my journey on the Autism-Mercury Yahoo group in 2006. This is where I met him years ago.  Andy interpreted my kid’s hair tests for me….for free. He did that for tons of people all the time. Andy answered thousands of questions through email, online groups, by phone…….every day, all week, all year. He never stopped helping random nameless strangers all over the world asking for his help. I used to try to imagine what his inbox looked like when he logged in…because I know mine was full. His must have been massive. Somehow he still replied.

He was there with his knowledge when we encountered some tremendous struggles with my son’s health that didn’t even have anything to do with mercury or autism.  I have years of emails from him and ya know what? He never once asked me for anything in return. That was Andy.

He knew there were millions of us lurking out here in the online world suffering…terribly, from mercury poisoning and his mission was to get them the information they needed to get their health back

I had the unique gift to be more than just a mercury poisoned mom or parent of an autistic kid. Andy and I were forum gurus, and business colleagues. We were in the trenches fighting the same war.  Without him, neither of my books would exist and all those children that are healing today because of Fight Autism and Win, would not be.

That is an epic rippled effect. A huge legacy. The number of lives he’s touched is innumerable.

When I was writing my chelation books, Andy was there. Encouraging me, giving his suggestions and his approval. In fact one of our last Facebook messages was him encouraging to me to write another book. He felt that Tressie and I worked well together, we wrote well together, and he wanted us to write another book. It was his words that encouraged me. Here he is this published PhD scholar and he’s telling me “Hey, you’re good at this, write more!”.

Andy was truly one of a kind. He was something special. He had a way of handling people to motivate them into doing something. He moved millions into doing something about their mercury poisoning. How many people have that kind of oomph!

Andy was in essence…a force beyond comprehension.  Andy was brilliant.  He never stopped amazing me with the plethora of things he knew.

He was even there as a mentor and advisor in all things business and authorship.

He and I had this ongoing thing of back and forth emails about copyright infringements. He’d find one for my books and tell me. I’d find one on his books and tell him. He always thanked me.  I didn’t have to do it and he knew that….he appreciated it.  Andy took me under his wing as an author and helped me navigate life as an author. There were so many new things to deal with when you go from forum parent or moderator to a published author. Andy showed me those ropes. Again, never asking me for anything in return.

Beyond our business relationship as fellow authors and entrepreneurs….

I can’t begin to say how I feel about him in terms of my children. Without Andy, I can’t imagine where my son would have ended up. Not just my son but looking at my healthy successful adult daughter today…..that’s all because of Andy.

I truly owed him my life. I could never repay him for these gifts he gave me and the entire mercury community. I hope his family knows how much we all appreciated him.

Exchanging holiday cards, book orders, late night email discussions about all sorts of things…I’m going to miss those things. So many nights over the last 10 years of firing off a late night email, “Hey Andy, I got a questions about….?”  I always sent it under the assumption that he didn’t have to answer it and if he did, it might be a few days or a week.  Five minutes later I had an answer in my inbox. That was Andy

We’d go back and forth discussing this or that. Many times talking about things that had no relation to mercury at all.

For life of me I don’t know how he juggled it all but he didn’t know I juggled it all either. He told me he had the greatest respect for a mom like me that juggled not only a special needs child, but homeschooling and still managing my book sales, and the forums. I was still helping others…when I was so tired and had so little left to give. He recognized that when few people did.

I loved his perspective and I could always count on him to analyze something fairly. If I were upset about a situation, he helped me take the emotional response out of it and look at it more objectively. He was perspective for many of us. He was our leader, our guide, our light at the end of the tunnel. He was more than just some guy online with a chelation protocol. He was a pillar and founder of this movement.

He was very good at resisting the rumor mills, the conspiracy theories, or other modalities that crop up in the mercury online community. He was grounded in reality. He grounded many of us in it as well by pulling us back when mercury was pushing one into that mad hatter’s world.

It’s hard to write this because this is a loss that can’t be computed. You can’t replace Andy and you wouldn’t want to try. He was one of a kind.  I think it’s important to remember that he may be gone but a little bit of him is with each of us. The way he mentored so many of us, taught us what he knew, left us with his writings/books. He has left us a wonderful gift of his work and his knowledge.

His work and his contributions will continue through all of us. This torch will be carried by those of us who knew him and worked alongside Andy doing what he did. We are his Army. We will not stop his mission, but we will carry it forth.

We will continue to teach others how to do safe chelation. We will help them get their health back like he helped so many of us. We will continue to honor him and share his legacy.

From my family to Andy’s family, you have our deepest condolences and our gratitude for sharing this beloved man with us. He spent a lot of time online with all of us and that must have been a sacrifice for you. We are truly indebted and grateful.

I’m going to miss Andy….

My reflections on sensory…

Some days nothing can stop us! It’s going well. Other days like this one, I feel defeated that I have not been able to find relief for my son’s tactile defensiveness. It’s a puzzle that I keep going over in my head while thinking, “I have to be missing something”.

So I’ve decided to do more detective work and start putting together what we know and charting it to look for patterns. He has developed a rating scale for his sensory and each day I write down his rating on a calendar. I include notes regarding if he were home all day, went out, ate something/someplace that isn’t usual etc.

Maybe,….just maybe I’ll see a pattern.

The most perplexing is that some children have sensory and it’s just a constant thing each day. In his case, he has it every day but how bad it is changes from day-to-day.

What I’ve narrowed down is that he has had periods of time in the past where it was markedly better but that hasn’t been for a while. He says it is better when he’s at camp, which is actually way out in the country near nothing. He also finds it better when we go out of town. It’s not gone mind you, but just less severe.

The primary sensory issues are really just tactile in nature. He has a very sensitive head to the point where hair and face washing is extremely uncomfortable. He’s been able to get used to brushing his teeth but there is a lot of gagging surrounding that.

This doc we’ve been working with thought food allergies were behind it because he seems to have a heightened sensory system where he can smell, hear things other people don’t notice.  Bright lights bother him and so does the heat. Some of this is adrenal related in my opinion but anyway, that these were the reason the doc suggested food intolerance. However, four months off those foods…it’s not foods causing it. Plus we found out the food testing that was done was meaningless anyway.   (I detail that in this post)

I’ve been over the “mold” exposure theory, environmental allergies, etc and he just doesn’t have the symptoms for any of that.

The autoimmunity and viral issue….seems sensory would be improving then because he’s been on things to treat that since March and it’s almost June.

So the final though from the doc was to take him back to an occupational therapist for sensory disorders. It’s hard to get a 14-year-old to want to go to anymore therapy.   He’s been through so many of types of therapy already and he reached an age/point where he began refusing several years ago. But trust me it’s not off the table if they can actually help him but it won’t be easy to get compliance and find a properly trained therapist.

Going over my mental list of what I’ve tried:

  • chelation: yes, doing that, approaching 200 rounds.
  • antivirals: done it and  repeating it again now
  • antibacterial: done it, many times
  • antifungal: done it and he has no antibodies to yeast or symptoms at this point
  • antiparasitic: done it every year since he was like 5, no change
  • he has no gut issues so not thinking it’s dysbiosis
  • food allergy elimination diets: gluten free, dairy free, gluten/dairy/egg free diet
  • homeopathy: done it, did nothing for sensory
  • Wilbarger protocol: terrible experience for all including him, discontinued.
  • sensory diet: done it, doing it, but that doesn’t actually “fix” the issue, it’s more a coping mechanism. Which means the electric toothbrush, trampoline, weight blanket etc and so on.
  • primitive reflex integration/visual motor therapy

So I’m sort of at a crossroads because nothing we have done to date lets him wash his own head or face.

I don’t think he’s hardwired this way because if that were true, the condition would not change from day-to-day.  In our early days of chelation he had fluctuations with sensory and large improvements with it but we reached a point where I don’t see it improve anymore. Duly noting a DMSA/ALA round a few months back he did report it was worse so it’s possible some metals could still be a factor. But then again, he reports it’s worse some days and he isn’t on a round at all. It’s possible it wasn’t the round at all, and it was just one of his bad days.

Ahhh! So frustrating doing your own research because no one out there knows. Guess we will see how the journal log of symptoms goes.

Making sense of food allergy tests

A few months back I wrote about a food allergy panel that our doctor ordered to check my son for food allergies. I really should have asked a lot more questions before agreeing to spent nearly $300 for this testing. It’s expensive and poking your sensory kids finger for blood is a horrible experience for all.

In any case we trusted that the doctor had researched the validity of this test. I should have researched it.  Recalling that my son’s results indicated he had elevated IgG results to several foods.We were told he needed to be off these foods for a period of time to help his body’s immune response calm down.

Four months later, with no improvement, I compared notes with another parent that also reported no change in symptoms/behavior when removing foods based on this same test. This parent ran a follow-up test nearly 6 months into the diet. The results made me questions all of it when I looked at the original and the follow-up.

So what is an IgG?  It’s a “memory” antibody and from what I read IgG antibodies signal past exposure to a food antigen, not allergy to it.  What? Wait….past exposure not allergy?

Of course he was exposes to eggs, whey and gluten in the past and regularly prior to any diet. He was actually already gluten free for a good 5 months before this test was done.

The other child’s follow-up testing showed that the elevated antibodies to those original foods went down which is what you’d expect if you weren’t eating them for 6 months. What we did not expect was there are now elevated antibodies to some of the foods the child has been eating to replace the ones he couldn’t have. So now instead of having elevated IgG to milk, he has it to soy because his cow milk was replaced with soy milk.

So we both looked at each and thought…so does it matter what he eats or are these antibodies just going to go up and down depending on what you eat?

That made me think, wait a minute. How valid is this test?

I am having a hard time finding valid scientific research that demonstrates that elevated IgG to foods actually indicates a food intolerance when the child has no food allergy symptoms to begin with.

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