Published July 1, 2008.
287 Pages - $25.95
Written in collaboration
with LIA Foundation
Author, Health Care Journalist
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Tami Duncan's Preface
It seems like yesterday when my beautiful baby boy was born. He was born right on time; on his due date, in fact. He was healthy and had a great APGAR score. He seemed happy to be in my inexperienced arms; I had never even held a baby before.
As he began to grow and develop, there were many times that I thought this boy must be some kind of genius. I could swear I heard him say “Elmo” at just six months of age. He was my perfect little boy. The lady at work said she had never seen such great, fine motor skills, as he could take apart mechanical things that had just the tiniest of screws.
I had the usual arsenal of baby books to track his progress. He made most of the milestones on the check-off list. The things he hadn’t accomplished, the doctor said it was “because he was a boy and they can just take longer.” Okay…well, I didn’t know any better. He was my first-born; who was I to question the decades of experience that the grandmas and doctors have?
When it came time for preschool, my guy seemed to cling to me much more than the other kids. I remember crying outside the preschool door, because I could still hear him crying for me. They assured me that he would calm down after just a few minutes in the classroom. I knew this was right in my head, but my heart told me that it wasn’t. The teachers also raved about how smart he was; he could stack blocks much higher than the other kids. A sense of self-satisfaction filled me. I’m doing good.
When he was 4 and in pre-kindergarten, I noticed that he wasn’t doing the same things as the other children. His speech seemed more slurred; his coloring was more scribbly. He was also notorious for playing alone on the playground or looking for bugs by himself. My poor baby, just like his mommy, had a hard time connecting with other kids. I asked the preschool teacher if she thought there was any problem. She said, “Oh no, don’t worry about it. Sometimes the boys just take longer.” Hmmm.
Kindergarten came and more differences began appearing between him and the other children. My son couldn’t jump, run fast, hop, read, or write his name. All of the other kids could do this. I finally realized that I couldn’t listen to what other people were saying and had to go with my “mommy gut.” I made a list of the things my son couldn’t do. This list took up two pages. I presented this to his teacher, and she said I was right. But in private school, they really don’t know what to do. I’ll always be grateful for Mrs. Smith who spent time praying about my son, and what to do next. She finally came to me with the answer.
As she was perusing through the educational supply store one day, a lady asked Mrs. Smith what she was looking for. She told her all about my son. This lady just happened to be a special education teacher. She asked Mrs. Smith about his symptoms and determined that he needed an evaluation for sensory integration disorder. When Mrs. Smith told me this, I remember having to write it down... “Sensory integration disorder. What is this?” I’d never heard of it. But by researching online, it sounded right.
Finally, we got an evaluation for SID and speech. I remember my heart falling through to my feet when I saw Miss Beth evaluate him. He could do much less than even I had thought. We walked away with a plan to start occupational therapy and speech therapy twice a week.
I thought we were all set; that we had our answer. But then in first grade, the gap between his skills and other children’s widened even further. He was not reading well; he couldn’t keep up in any subject except science. When I asked our school district for help, they told me they couldn’t help him until he was three years behind the other kids. This was a lie. This lie enraged me enough to start telling everyone about it. By just a fluke, I told a total stranger in the cell phone store this story. His sister-in-law happened to be an advocate for children with special needs. This began our journey to enter into the world of autism.
After much bureaucratic baloney, I took my son to one of the leading pediatric neurologists in Southern California. We walked out with an autism diagnosis. Was this devastating? It was bittersweet. I wasn’t destroyed, because I looked at this as an opportunity to finally have some things to work on. Autism opens up the doors for many other therapies and resources. When a kid just has sensory integration disorder, it appears that the only thing to do is occupational therapy.
My son was 7 years old when we got the diagnosis of autism spectrum disorder. It took about one year for me to find information on biomedical treatments for him. So at that point, he was 8 years old. His age was past the “window of opportunity” as many people call it. No chance for early intervention here. The mommy guilt set in “…I should have, would have, could have, if I had known….”
We began treatment with a DAN (Defeat Autism Now) doctor. Immediately, we began the gluten-free/casein-free diet. We tested and treated other issues such as metal toxicity, yeast overgrowth, viral issues, and vitamin/mineral deficiencies. At this time, my little guy did flourish. He began reading and jumped from a kindergarten to 3rd grade reading level in just three months. His tantrums, compliance, and behavioral issues diminished drastically. The progress we saw was amazing. He did still have autism, but was improving significantly.
During this time, I started noticing that I was very tired, irritable, and seemed to get sick a lot. I was getting ear infections, sinus infections, and frequently having weird hallucinogenic dreams. I went to the doctor many times and was hurried out with yet another antibiotic.
It wasn’t until November of 2005 that I received my wake up call. I woke up one Sunday morning with no voice. Not a sound louder than a whisper would come out. I had no other symptoms. I wasn’t sick, just no voice. I went to the doctor and was given another round of antibiotics. After a week with no improvements, I went to an ear, nose, and throat specialist. He noted that one of my vocal cords looked paralyzed. He thought it was probably a virus and that my voice should come back soon. He said if it didn’t come back in a month, to call and make an appointment. A month! I thought to myself, “Are you kidding me?”
After four weeks without a voice, I contacted my son’s DAN doctor and he referred me to a Naturopath in his office. Luckily she squeezed me in quickly, because at this point, I had no patience left. She took a history, and talked about testing. She read off a list of tests she wanted to do. I handed over the credit card and said, “Run them.” I wanted my voice back before Christmas.
A few weeks later, the office faxed the lab results over to me. My voice had magically come back after two months, but I still wanted answers. I was shocked, to say the least, when my labs showed multiple infections. In fact, the test that was the most staggering was this Western Blot she ran. It showed that I was 100% positive for Lyme disease. I didn’t even know what this was and had to Google it. I was blown away to find that it is caused by a tick. I still stand by the premise that under no circumstances do I camp; I hotel! I never remember a tick bite of any sort whatsoever. But yet, here it was. I had Lyme disease, and the symptoms of it to boot.
I told my son’s doctor about my diagnosis. He said to me, “You know, some of these autistic kids are testing positive for Lyme, too.” What? What did he just say? But how? I went home and Googled that too and found an entire group of moms online on a Yahoo! group called Lyme-Autism; hundreds of them in fact, in which the mom was sick with Lyme and the autistic child had autism and Lyme disease. I called the DAN doctor and said I wanted our whole family tested.
Luckily my daughter and husband were spared. But my little boy, at this time 9 years old, still having autism, was positive for Lyme. In a twisted way, I was happy. Finally we had another piece of his “autism puzzle.” You see, we had hit a wall or
plateau with his current treatments. We had done almost everything and weren’t able to pull out any more
improvements. This Lyme disease diagnosis provided a scary, yet realistic reality that we did have things to work at. If we treated the Lyme infection, we might be able to pull out more improvements.
I told one of the other autism mommies about my son having Lyme and she said, “Oh, so you gave it to him.” I just walked away, stunned and devastated. Was she right? Well if she was, I would have never given him anything on purpose. Squash the guilt; it’s all I can do. I can’t help but feel guilty but I know that it’s unproductive, ridiculous, and just plain old stupid. I learned that we pass on lots of our immunity and antibodies to our children. It’s a natural process of child-birth.
So there we went, mommy and son on a similar journey together. We are fighting to be well, fighting for our health. I was able to get a new understanding of some of the things my son would go through. My Lyme disease presented itself mostly neurologically. I was having word-finding problems, some slurred speech, a lot of forgetfulness, lack of focus, light and sound sensitivity—just to name a few. I was put on a diet free of gluten and casein. Now I realize just how difficult it must be for our kids to go on this diet. But I also realize how necessary it is. I felt the “leaky gut” syndrome and pain involved when I would cheat on this diet.
We both were under the care of an LLMD (Lyme-literate medical doctor). I seemed to be getting sicker and my son’s liver couldn’t tolerate the medication. I was told that he would need to go on IV antibiotics once his yeast was under control. The last statement is laughable. You see, we had never been able to get his yeast under control. So now what could we do? No Lyme treatment? How could we recover if we could not get rid of this horrible bug?
I dug up the number of a woman named Kathy. Kathy is considered the expert mom on Lyme disease on the Internet. I called her, pissed off. We talked about how the Lyme doctors don’t understand autism and how the majority of autism doctors have no clue how to treat or even test for Lyme. Where does this leave our kids? In addition, I had read online that Dr. Dietrich Klinghardt was testing autistic children and found that many of them had Lyme. Was this bigger than we thought? Was it more than just these few hundred kids? Could it be thousands? This conversation with Kathy was pivotal.
We talked about holding a “think tank” and bringing these doctors together to come up with some answers for our kids. But would doctors fly across the country at the request of two desperate moms? No, they wouldn’t. We decided that we needed to form a foundation; a non-profit, to have some validity behind us. Within just one month we were set up, making contact with doctors, and planning our first event.
We filed papers for our non-profit we refer to as the LIA Foundation at the end of September 2006, and had our think tank just three months later in January 2007. The doctors came—the passionate doctors, that is. We had no money to bring them in, or even to pay for their hotel room. We had only enough to get the meeting space and some coffee and a light breakfast. I’m forever grateful for these doctors who came and spent the weekend passionately discussing these kids and what they could do to bring about healing.
A blessing for us personally came out of this think tank. A mom, Carmen, had called me and begged me to invite her daughter’s doctor to the think tank. She said that he was able to get her daughter, who was bedridden, out with her friends and off all medications. “Okay,” I said, “I’ll call and talk to him.” I called Toby’s office and he personally answered the phone. We talked for 30 minutes and he told me about his methods—which were, indeed, outside the box. But, I figured, who was I to judge? If he’s healing kids and adults, let’s check it out.
My son’s DAN doctor was at the think tank and said, “I want you to take Michael to see Toby Watkinson.” After seeing his presentation, I was in total agreement. Dr. Watkinson has been able to pull my son out of his plateau and show a new level of healing and improvements. We are on this journey with him now and he is peeling away our infections and damage, one layer at a time. My son is healthy and improving in all areas. I am also improving and show few of the symptoms I used to have. The good news is that our doctor is now going to begin training other doctors on his methods. This way, more people across the country can benefit.
The LIA Foundation has flourished into an organization that is leading in information on the connection between Lyme disease, co-infections, and autism spectrum disorder. At just eight months old, we held our first conference in Southern California in which over 200 people came from all over the United States and Canada. In addition, a physicians’ training course trained over 40 physicians on different treatment options available to help our children. We plan to continue on this mission until we have made a difference and these children and parents are healed.
As for Michael, I can say with certainty now that my son is in recovery. He is not recovered. But we can touch it, and I can see in him the boy and man that he can and will be some day. He would make a great pastor, sales executive, scientist, dog trainer, or whatever he sets his mind to be. There is hope; my son is healing.
Research is finding that many tick and flea-borne infections infect untold thousands of children. These infections, such as Lyme, Bartonella, Babesia and Mycoplasma, are transmitted painlessly by invisible deer ticks, some vaccines, congenital transfer, or mere insect feces. Many cutting-edge scientists and physicians see this massive flood of emerging stealth infections and are publishing information about them. However, most physicians are obviously rushing through appointments, working merely to survive, and have little time for so much new information.
I tell you my story to give you a ray of hope. As parents, we need to look at every single possibility when it comes to our kids, even if our doctors are too busy to do so. Are you going to ignore the Lyme disease connection because it sounds off-the-wall? What if your child has it and you missed it? As you can see, children can heal even when they are a bit older. All of our kids are worth it, and so are you.
Written, produced, and sold
in collaboration with
The LIA Foundation
Now Available! Published
July 1, 2008
By Bryan Rosner
With Tami Duncan
Foreword by Robert Bransfield, M.D.
Paperback Book, 287 Pages, $25.95
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