many parents, the discussion about whether Lyme disease and autism
are connected is a moot point. It is really just semantics. The
fact is that many children with autism have an active Lyme infection.
Debate about whether Lyme causes autism, Lyme contributes to autism,
or Lyme comes about after autism does nothing to help the many autistic
kids who are testing positive for Lyme disease daily. If kids are
infected, then they need to be treated. It's that simple.
Unfortunately, the Lyme disease diagnosis is often missed in autistic
children. Many of these children are diagnosed only after the mother
is first diagnosed. The message, then, is clear: if you are the
mother of an autistic child, get yourself tested for Lyme disease,
and if you have it, the probability that your child also has it
is much higher. My story, excerpted below from The
Lyme-Autism Connection, co-authored with Bryan Rosner, will
help drive this point home.
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 I watched him began to grow and develop, there were many times
that I thought this boy must be some kind of genius. I swear I heard
him say "Elmo" at just six months of age. He was my perfect
little boy. A 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 he was four 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.
Finally, we got an evaluation for SID and speech. I remember my
heart falling 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
into the world of autism.
I took my son to one of the leading pediatric neurologists in Southern
California. We walked out with an autism diagnosis. My son was seven
years old when we got the diagnosis of autism spectrum disorder.
It took me about one year to find information on biomedical treatments
for him. At that point, he was eight 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 flourished.
He began reading and jumped from a kindergarten- to third-grade
reading level in just three months. His tantrums, compliance, and
behavioral issues diminished drastically. The progress we saw was
amazing. He still had 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 and sinus infections
and frequently having weird hallucinogenic dreams. I went to the
doctor many times and was always hurried out with yet another antibiotic.
It wasn't until November 2005 that I received my wake-up call. I
woke up one Sunday morning with no voice. I went to a naturopath
who worked in the office of my son's DAN doctor, and she ran many
labs. 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 had Lyme disease and the symptoms of it to boot.
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 nine 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.
These events are just the beginning of our
story. When I look back at my health history, I believe that I was
probably infected with Lyme disease around the age of 19. I can't
remember a tick bite (most Lyme sufferers do not remember being
bitten), but I do remember a ringworm-looking rash, followed by
an unexplained high fever and stiff neck that hospitalized me and
left the doctors scratching their heads. Once the fever broke, everyone
assumed I was fine, and we pursued this no more. I had to get back
to college and back to my life. But the damage was done; I had acquired
It appears that I gave Lyme disease to my little boy, without even
knowing it. Both my son and I are still in the healing process,
but I am happy to report that we are much improved. My son is on
the verge of recovery; I can see this every day. His body is healing,
and he is waking up from the fog of autism.
The term "Lyme disease" is probably not the most appropriate
description of what is happening inside the bodies of autistic children
such as my own. Jeff Wulfman, MD, of Vermont, was one of numerous
physicians who presented at our recent Lyme Induced Autism (LIA)
Foundation conference held on June 27-29, 2008 in Indian Wells,
California. Dr. Wulfman refers to the disease in question as "Borrelia-Related
Complex." It's a multi-factorial disease encompassing multiple
infections such as Borrelia, Bartonella, Mycoplasma, Babesia, and
Strep, to name a few. (In a future column, I plan to share more
of the important information shared at our recent conference.)
Whether or not a particular child becomes victim to Borrelia-Related
Complex depends on many factors, some of which we understand, some
of which we do not. We know that factors such as environmental triggers,
maternal health, and genetics play a role. And we know that these
infections can be passed from mother to child during pregnancy.
The science of Borrelia-Related Complex is critically important
and so are the associated studies currently taking place. However,
for this column, I am focusing on the experiences of mothers. "An
observant mother's evidence may be questioned but should never be
ignored" –Lancet, 1951.
Many mothers are convinced that they are passing along Lyme disease
to their newborns, and research is beginning to prove them right.
Here is another moving story of congenital transmission, again,
excerpted from The Lyme-Autism Connection.
A Long Journey
Who would have ever thought that time spent in the garden I loved
so dearly would have caused us all so much pain...I have always
been a person who loves the outdoors. I have always spent as much
time in my yard as I can. So, when I was pregnant with my third
child, it was no different. During my first trimester, I spent a
considerable amount of time working in my garden at our suburban
home near Albany, New York. I don't remember a tick bite. I never
had the "bulls-eye" rash. I just remember waking up one
morning with extremely swollen glands in the right side of my neck,
believing that I was going to come down with something. But then
it just went away.
A few weeks after that, I became increasingly fatigued, and everything
seemed to ache. I dismissed it as just pregnancy symptoms and never
gave it a second thought. Then one morning, I woke up with what
I thought was a pinched nerve in the right side of my back. I was
about 14 weeks pregnant at the time. I had a strange, tingling sensation
which extended down my leg. I was told to lie down and rest, which
I did. The tingling began to progress to all four extremities. The
next day, I began to lose fine motor function in my hands. I immediately
went to the ER at a local hospital and was admitted to the neurology
unit with suspected Guillian-Barre. During my time there, my symptoms
progressed to include: numbness in all four extremities, face, and
abdomen; tachycardia (fast heart rate), unsteady gait and balance
difficulties; tinnitus (ringing in the ears); and a plethora of
other bizarre symptoms. Around this time, my parents' (who were
also my neighbors) dog was diagnosed with Lyme disease. I was convinced
that I had Lyme disease, but none of the physicians felt that my
symptoms were consistent with Lyme.
Despite my strange symptoms, my tests all came back relatively normal.
I did have one positive Lyme ELISA and one equivocal ELISA and a
slightly abnormal white blood cell count, but my MRI, lumbar puncture,
and nerve conduction studies were all normal. The Western Blot eventually
came back negative.
The day before my discharge, I began to experience terrible head
and neck pain and the left side of my body had begun to twitch and
move involuntarily. I was still discharged and returned home. A
day after my discharge, I was back in the ER. I had begun vomiting
and was unable to eat or stand upright due to the pain in my head
and neck. I had lost ten pounds in less than a week, and the left
side of my body was still twitching uncontrollably.
They ran more labs at the ER, which showed mild hypoglycemia, but
were otherwise normal. I was told that there was nothing medically
wrong with me and that I should "see someone to evaluate my
level of stress." I was discharged from the ER and sent home.
Less than 24 hours after that trip to the ER, I found myself sitting
in the ER at a different hospital. My symptoms had continued to
progress, and I was becoming increasingly ill. My OB admitted me
to the hospital for hyperemesis. I was given IV fluids and round-the-clock
Demerol and Phenergan. I was given one dose of IV Rocephin because
of the possibility of Lyme, but that was not continued. I was stabilized
and sent home after a few days.
Things seemed to settle down a bit after that. I was still tired,
and everything ached, and my feet were numb, but the most severe
symptoms had dissipated. I was still convinced that I had Lyme disease,
but no one would listen to what I had to say. I had an old prescription
for amoxicillin, so I began taking it. Within a few days, I began
to feel better, but that was short-lived. After about a week on
the amoxicillin, I began to have severe abdominal pain. Afraid that
I was causing more harm than good and frightened for the well-being
of my baby, I stopped the medication.
The abdominal pain was gone, but my symptoms were back. Not long
after that, I saw an infectious disease doctor for possible Lyme
disease. He ran a number of tests, including additional Lyme tests.
My Western Blot was "negative," but showed one reactive
IgM band at the 23kd location. (I have since learned that this is
considered to be equivocal by many Lyme-literate doctors.)
The lab also only listed the bands included in the [Centers for
Disease Control] CDC's diagnostic criteria, so I do not know if
I had a response to any of the other bands. I did have an elevated
ASO titer and was misdiagnosed with acute rheumatic fever and placed
on low-dose prophylactic penicillin therapy. Life was quiet for
a while. In December of 2004, I delivered my third child: a beautiful
and healthy baby boy. Other than being very jaundiced for the first
two months of his life, he appeared to be perfectly normal. After
his delivery, I went to see a rheumatologist because I was still
experiencing significant joint pain. He ran more Lyme tests, which
were, of course, negative. He also told me that there was no way
that I had acute rheumatic fever. He informed me that I "had
as much muscle tone as someone who had been bedridden" and
that I should "lose weight, exercise, and come back to see
him in a year." Needless to say, that was the last time I saw
that doctor. Since I no longer had the diagnosis of acute rheumatic
fever, I discontinued the penicillin.
That June I found out that I was pregnant again. That was the beginning
of a terrible turn in my health. I began experiencing severe abdominal
pain and diarrhea, tinnitus, major balance difficulties, spontaneous
bleeding in my fingers, low B12 levels, headaches, increased joint
pain and fatigue, attacks of severe hypoglycemia, syncope, hair
loss, strange visual disturbances, joint deformity in my hands,
severe "brain fog," forgetfulness and word-finding difficulty,
and many, many more strange symptoms. I couldn't remember what side
of my car the gas tank was on, how to put the words together to
say "chocolate milk," and even spaced out when I was driving
and forgot where I was or where I was going. I was 27 years old
at the time. I was evaluated for possible multiple sclerosis, lupus,
and rheumatoid arthritis.
My tests all came back negative, and my symptoms continued to progress.
I spent a considerable part of my pregnancy on methylprednisolone
(a steroid) and had monthly level two ultrasounds. I had to withdraw
from my classes and quit working. I was barely able to take care
of my children or myself. It was a terrible time in my life.
In January 2006, my daughter was born, beautiful and healthy. My
symptoms never went away, and I spent the next few months trying
to continue with school at night, studying for the MCAT, and taking
care of my children during the day, all the while fighting against
my body and doctors who refused to listen. By that summer, I had
gotten to the point that I was convinced that I would end up on
disability for the rest of my life, or perhaps even worse. I had
seen just about every type of specialist that exists, to no avail.
I finally saw a very kind immunology and allergy physician in Albany.
After performing a number of tests, he concluded that I might have
hidden Lyme disease and should go see a physician in Boston who
specialized in the disease. I attempted to contact the doctor several
times, but never received a call back. Desperate, I once again began
self-medicating with some leftover amoxicillin that I had. The response
was nothing short of miraculous. Within a few days, my mind began
But, along with that, the pain in my body began to change. Instead
of the intense aching, the pain became "cleaner and sharper,"
and the pain in my head and neck that I had experienced two years
prior in the hospital returned. I was experiencing a Herxheimer
reaction, which is a worsening of symptoms caused by the release
of toxins by the dying bacteria. I eventually went to see my primary
care physician who agreed with my self-diagnosis and began prescribing
the medication for me. I was finally, after more than two years,
diagnosed and being treated for Lyme disease.
Around this same time, my son began to display alarming developmental
delays. He was started in Early Intervention when he was 18 months
old and began speech therapy and special education and later physical
therapy. He had global developmental delays and hypotonia (low muscle
tone). He developed reflux. He was irritable and would often scream
out at night as if he were in pain, but no one could explain why.
By the age of two, he could not even say "mama" and had
begun to socially withdraw. His therapist would come to the house
to work with him, and he would lie on the floor and close his eyes.
He refused to communicate with them in any way. I came across a
study on Columbia's Lyme Research site and began to wonder. The
study was looking at the prevalence of a Lyme-induced-autism-like
syndrome. The children showed developmental delays consistent with
autism symptoms, but when they were treated with antibiotics, they
began to get better. Convinced that this was the root of my son's
problems, I took him to see a pediatric infectious disease doctor
at the local hospital. She informed me that not only did congenital
Lyme not exist, but there was no way that I had Lyme disease. We
left her office very quickly.
I began researching pediatric Lyme disease further and found Dr.
Charles Ray Jones in New Haven, CT. I immediately scheduled an appointment
with him. I took my son to see Dr. Jones, and he started him on
amoxicillin. The response was once again, miraculous. My son went
from being completely non-verbal, almost non-testable, and most
likely heading towards an autism diagnosis, to virtually normal.
We noticed a change almost immediately. It has only been about three
months since he started his antibiotics, and he now no longer qualifies
for Early Intervention services. His language, which had showed
profound delays, is now within normal limits. He smiles and laughs
and hugs us. He is just a different child now.
So, this is our story, our truth. I know that there are others out
there with similar stories. Until more research is conducted and
the disease is better understood, there will be even more who suffer.
These past few years have been a powerful learning experience for
me. My hope now is to spread the word about the tragedy of Lyme
We are in the midst of an epidemic caused by a bacteria more sophisticated
than our current technology and a disease that most doctors don't
understand. I know that there are countless people out there suffering
the way that we did who are told that they are "crazy"
or who simply have their symptoms dismissed as nonsense. I cannot
be silent about our experience and can only hope that I can alert
enough people to this disease so that they may not suffer the way
that we did. Please, educate yourselves. Ask questions. Don't ever
doubt yourself. Don't ever give up for fighting for what you believe.
If I had given up or had not had the strength to fight and question
everything, my children and I would have faced a very grim fate.
I know that we would not be where we are today. So, please, don't
ever give up fighting and [do] help me to spread the word.
So, where do we go from here? In most instances,
it requires decades before mainstream physicians adopt new ideas.
However, our children and families don't have the luxury of time
or the willingness to wait. Current research suggests that at least
20-30% of autistic children are infected with Borrelia-Related Complex.
Given these high numbers, why are just a few thousand parents talking
about it? The number of affected children is estimated to be 250,000-300,000.
Our Lyme literate doctors have been seeing children with Lyme disease
who have "autistic" symptoms for years. However, the
majority of doctors are missing the boat. Their utter refusal to
learn and execute appropriate testing is unacceptable and forces
parents to take matters into their own hands – that is, if
the parents ever even become aware of the Lyme-autism connection.
Doctors specializing in autism have been warned from governing organizations,
and even organizations within the autism community, that treating
these kids for Lyme disease may place them at risk for losing their
medical licenses due to the controversial and politically charged
debate currently surrounding Lyme disease treatment policy in the
United States. Given this regulatory constriction, and the hyper-focused
attention on mercury as the only cause in autism, children are being
misdiagnosed and given inappropriate treatment plans – not
just a few children but possibly hundreds of thousands of children.
Research on the synergistic relationship between Lyme, multiple-infections
and mercury is being ignored. The experience and wisdom of an ever-increasing
number of moms is being minimized. It is time for the medical community
to step up and get educated on this disease paradigm that is destroying
so many families.
Parents and a few brave physicians are beginning to pave the way.
If you are a parent, are you going to look under every rock to find
healing for your child? If you are a physician, are you going to
wait ten years and see how this plays out, or are you going to learn
as much as you can and begin helping our families? The message to
parents and physicians is clear and growing louder each day: you
can no longer ignore the Lyme-autism connection.
President of LIA Foundation
Journalist Bryan Rosner began studying and
writing about Lyme disease after his five-year battle with the illness.
The Lyme-Autism Connection, which
he co-authored with Tami Duncan, is his fourth book on Lyme disease;
his previous three explored alternative treatments for the disease.
Bryan's research focuses not only on treatments popular in
the United States, but also successful healing modalities found
throughout the world.
You can learn more about and purchase
The Lyme-Autism Connection
by visiting www.LymeAutismBook.com
or calling BioMed Publishing Group at 530-541-7200.