When the thought of Lyme Disease is brought up, most parents think.... "No way, my child has never been bit by a tick!" This is how most of us parents felt too. Read our stories of how our children received this diagnosis and see if you can relate to any of them. It's worth considering as a possibility for your child.
Michael and Tami's Story
My son Michael is 10. Since he was 3 I knew something wasn't right, he seemed to develop fine up until 3. There was no sudden regression, just a kind of plateau in development. I bugged his teachers in pre-school, in kindergarten about what was wrong. He was just immature, talked a lot but had trouble slurring his words, articulation, gross motor skills, reading, and he scribbled like a toddler even in kindergarten. I finally had had enough of people telling me the same old... "oh every child develops at a different pace", eventually it just sounded like "Blah, Blah, Blah" to me.
Finally his kindergarten teacher ran into a special ed teacher in the store. She gave the teacher her phone number for me to call. She told me it sounded like sensory integration disorder. I remember having to write that down and keep looking at it to remember because I'd never heard of such a thing. I then took him for the evaluation and they agreed that was what he had. When first grade came, they wouldn't accept him in the private school I wanted. He didn't test in, he couldn't balance on one foot, bombed the academic test. I was heartbroken because I really wanted him to have a Christian education. When I enrolled him in public school they told me he also had ADD and I should put him on meds. I struggled with this so much and did for a few months. He didn't make any improvements on medication and basically didn't learn anything in first grade (unless it was about science). Then I met a special education advocate who walked me through everything. She sent us to a neurologist. No one had ever told me this before. I came home with an autism diagnosis. This was heartbreaking but a relief at the same time. It gave me something to work on.
The neurologist only said he needed speech and occupational therapy. I kept thinking that there must be more and searched for answers. One day I googled "help for autism" and up came a website talking about bio-medical intervention. I thought it was a longshot but I called the closest DAN doctor and made an appt. I was shocked to find that my son had yeast, mercury toxicity, food intolerances and much more.
After going through the DAN protocol for over a year, I started to get sick. I thought it was exhaustion, sore throats, fatigue, etc. But then I lost my voice completely, for what I thought was no reason. I went to two doctors who told me it must be a virus. Well after two months of no voice, I made an appointment with Dr. McFazdean from Stillpoint Center. She suspected mold exposure, adrenal stress and mentioned lyme disease. I thought "no way", I've never been bitten by a tick. But I was desperate for my voice back so I told her to run the tests she wanted to. Among many other things she found, I tested positive for lyme disease.
I remember reading somewhere online that many times when one person in a family has lyme that the rest of the family is suceptible as well. Dr. Woeller told me that more and more of the autistic kids were testing positive for lyme. I said..."Well lets test everyone then". Turns out Michael tested positive, my daughter and husband were negative. I felt like the lyme diagnosis for Michael could actually be the missing piece of his autism puzzle. This all happened this year. We've been seeing an LLMD (lyme literate medical doctor), but he is not proficient in the treatment in autism, however, an expert in lyme. We found that Michael is unable to tolerate traditional lyme treatments (anti-biotics) because of his high levels of yeast. High yeast brings out immediate regression in him. When the yeast is under control, his is at his most typical. He has made much progress on the DAN protocol. We're aiming for recovery. Without the right treatment for his lyme, he doesn't have the best chance at recovery.
Now Michael and I are on this journey together. We're both on restricted diets. We both have 40 plus supplements to take each day. We are both committed to health. He is not as severly affected as some kids, but our mission is to help other kids get the treatment they deserve. It just shouldn't have to be so hard for a kid to be a kid.
August 2007 update: Michael and I are both off all supplements, DAN protocol, etc. We both have made tremendous progress by adding a special form of homeopathy to our treatment plans. We have been able to make improvements and still come off of just about everything. We are both still on a gluten free, dairy free diet, we take a product called VIBE and see our homeopathic practitioner once every two weeks in person for updated and customized treatment. Michael is at his best and for the first time I can almost touch recovery for him. As for myself, I still get fatigued in the afternoon and would have trouble doing any cardiovascular exercise. But other than that, my symptoms "almost" gone.
Tim's story
Tim was born very tiny (5 lbs. 6 oz) although full term. He was floppy, and had "failure to thrive." He had horrible feeding problems, GI problems, and developmental delay. He was a puzzle to the doctors back in 1984 in Marin County, California.
Tim was given the PDD-NOS diagnosis and went into the "system." I located other moms with a child somewhat like mine, and found my way to Dr. Murphy, who was Dr. Woeller's predecessor. The word "autism" was kicked around, but a formal diagnosis was never made until years later. We started rudimentary autism treatments and some of them worked pretty well.
The idea of Lyme Disease never entered my mind until 2003 and even then the possibility of it was very far-fetched. How could Tim have ever caught Lyme Disease? The reason the idea surfaced at all is that Tim's younger sister had had severe "mystery" health problems since the age of seven. She went into remission but it resurfaced as CFS/thyroid/adrenal/depression problems. Then his other sister all of a sudden developed extreme anxiety, leg weakness, and psychosis after a high fever. Suddenly we were beset with one mystery illness after the other. I felt like I was fighting WWIII all by myself between Tim's autism, Becca's severe fatigue and pain, and Jenna's severe psychological problems. It was a nightmare. I kept searching for a common cause, because I felt certain they all had the same thing, though it looked different in each one. Fatigue and leg weakness was the only obvious similarity.
I approached Dr. Woeller and he was the only doctor to listen to me. I tossed around the idea of Lyme with him, but like I said, it was too far-fetched for me to take seriously, since in my mind it was a disease of the East Coast. It was two years until I had the test done, after my daughter's CFS mushroomed completely out of control and Lyme Disease was found, after ruling out everything from brain tumors to MS. Tim was positive on his lyme test, but by the time he was tested, he was also very ill. I think he was born with it but I'll never know.
Now that we have a diagnosis, finding treatment isn't a problem. Getting well might be. Tim is 22 years old. Reading the description of congenital lyme on Dr. Jones' website, Tim fits the description of a child born with Lyme Disease to a T. But who was looking for Lyme Disease in 1984 in Northern California in a newborn with failure to thrive? Nobody.
Standard treatments don't work. I didn't mention that antibiotics caused huge problems for Tim. That's why I am going to Dr. Derksen. The amoxicillin was miraculous for about 2 weeks (Tim was social, relaxed, outgoing, cooperative) then the GI problems started and his health deteriorated, so I had to stop. He is now on artemisinin for babesia and in about a week I am going to start the salt/c for him. I had a feeling that antibiotics were a bad idea, knowing what I know about autism and yeast.
If you would like to share your story with us, please e-mail it to: Tami@liafoundation.org we would also love to see a current picture and with your permission post it on this website.
The information on this website is for educational purposes only. It is given in good faith to help people understand more about this disease. It is not intended to replace or supersede patient care by a healthcare providor. If an individual suspects the presence of a tick-borne illness, that individual should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases and autism.
