Think Tank to Examine Link Between Autism and Lyme Disease January 26-28
Why are doctors saying that up to 90% of children with autism are infected with Lyme disease? The Lyme Induced Autism Foundation is holding a physicians' Think Tank on January 26-28th in San Diego, CA to discuss this recent finding.
"Where is the proof that Lyme disease is a factor in autism? Currently, several doctors have stepped forward talking about this. Dr. Warren Levin of Vienna, VA recently appeared on the online radio show on www.autismone.com hosted by Duncan called "The Lyme-Autism Connection". He stated that of the 10 children with autism he tested for Lyme disease, 100% of them also came back positive for Lyme disease."
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Nan
Thank you for this article. We have a grandson who may be autistic. I had never heard the lyme connection before. At the very best, you have hooked me up with an autism source I did not know about before.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I pray your grandson is not autistic. I have known of a couple of parents with autistic children who have tested positive for lyme.
Do a google search for autism caused by lyme. You will be surprised at what turns up. Lyme can cause what appears to be an autistic-like syndrome in children.
At the very least, the child should be tested and if positive...treated!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Developmental Delay and Lyme Disease in Children: An epidemiologic study Participants: Children with Lyme Disease & Autism from New Jersey and Connecticut
Goals:To understand more about the association between LD and developmental delay and developmental regression
Status of study :Underway. As this is a population-based study, we are not recruiting individual patients.
Principal Investigator :Brian A. Fallon, MD
Design of the Study :
This study is supported by the Wilton Lyme Disease Task Force. Based on the hypothesis that the prevalence of autism may be increased in Lyme endemic areas, the prevalence statistics for autism in the school districts of known hyperendemic areas in New Jersey and Connecticut will be compared to the prevalence statistics for autism in the school districts of areas without much Lyme Disease.
The hyperendemic and non-endemic areas will be identified by categorizing rates of Lyme disease (in each area) into quantiles. Once the data has been collected and prevalence rates have been calculated for both autism and Lyme disease, an expected rate of autism will be calculated based on areas that have a low prevalence of Lyme Disease.
rom this rate, an expected number of cases will be determined (based on population size) and a calculation of the observed number of autism cases minus the expected number of autism cases will be made.
From this calculation, graphical comparisons will be made to determine if observed values of autism more dramatically deviate from expected values in areas that have high rates of Lyme Disease. Prevalence rates will then be mapped in overlays to determine if Lyme hyperendemic areas overlap with high rates of autism.
Arcview, a Geographic Information System (GIS) of which Columbia University is already in possession, will be used for all mapping purposes.
Contact :This is an epidemiologic study. No contact by subjects is needed at this time.
Screening Questionnaire :This is an epidemiologic study. No contact by subjects is needed at this time.
Frequently asked questions
Why is this study needed? Lyme disease has been associated with a broad array of neuropsychiatric disorders. Undoubtedly, the most common are headaches and stiff neck in early neurologic Lyme Disease and mild to moderate cognitive problems in later neurologic Lyme Disease. This latter syndrome has been termed encephalopathy.
Lyme Disease may also cause considerable irritability, particularly in the acute phase of the illness, as well as less common symptoms such as paranoia, obsessive compulsive behaviors, or mania.
Autism is classically considered to be a neurodevelopmental disorder, the cause of which is unknown. In our work with children who have developed Lyme disease, we have encountered a few children who had developed autistic-like disorders which were eventually also diagnosed as having Lyme Disease due to other concomitant symptoms; when the child received intensive antibiotic therapy, the autistic syndromes dramatically improved and, in some cases, resolved.
We hypothesize: a) that a small subpopulation of children with autism in Lyme endemic areas may have an antibiotic responsive disorder due to a spirochete-induced autistic syndrome; and b) that areas with very high rates of Lyme Disease would show higher than expected rates of autism. The latter hypothesis will be tested using geographic mapping.
What are some questions to ask if a child presents with new onset autistic behaviors?
Certainly if a child was well until age 4 and then develops significant abnormalities in social interaction, language, or imaginative play, this would not be typical of autism which is a disorder that shows signs and symptoms prior to age 3.
Autistic behaviors that emerge after age 3 would be diagnosed as either Asperger.s or possibly childhood disintegrative disorder. Childhood disintegrative disorder in particular may be associated with various general medical conditions, such as Addison-Schilder.s disease or subacute sclerosing panencephalitis.
Medical conditions need to be ruled out in children who develop these disorders after age 3. Lyme Disease should be suspected if the child has been exposed to a Lyme Endemic area, if the child has been bitten by ticks or experienced unusual round rashes, or if the child has had a bad bout of flu-like symptoms, or the child has been complaining of joint pains, headaches, or fatigue.
In the child younger than age 3, the diagnosis of a Lyme-induced autistic syndrome would be harder to make, as the age of abnormal behaviors would be consistent with the typical onset for non-Lyme autistic-like disorders. The work-up should include blood tests and a spinal tap to look for evidence of increased intracranial pressure, elevated protein or white cells, and/or elevated levels of antibodies to borrelia burgdorferi.
How often would Lyme Disease cause an autistic-like disorder?
This is probably a rare occurrence.
If Lyme Disease has induced an autistic-spectrum disorder, is it reversible?
Based on our knowledge of Lyme Disease, we would expect that appropriately intensive intravenous antibiotic therapy would result in a marked improvement in the autistic-spectrum behaviors.
We do not know how long such a treatment should last, but our experience with other patients suggests that, if six weeks of therapy do not result in significant change, a longer course of therapy may be warranted and ultimately effective.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
It's about time they began looking at that connection. I've always suspected it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I'm boosting this so I can find it again. I have a dear friend that needs this information.
Thanks Nan!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I always thought my children were slightly autistic when they were born. They used to rock back and forth and had alot of problems developing and learning.
I didn't realize they had lyme until much later. They are doing fine today and are still be treated for lyme.
having spent many years as educator and therapist, working with adults and kids, with autism
I worked in Utah, CO. and N.M., so not places that would be considered epidemic at all (but I think it is out there, one way or another...)
this is not a homogeneous group and there are at least two genetic markers identified with autism, from what I understand,s een in families with more than one member with this disorder
over the years I worked with a few kids, that just did not quite fit the profile of autistic to me, again aknowledging that every kid with this disorder is different
but typiclally there is not a psychotic element to these individuals with autism-the opposite-- really lack of imagination, very concrete, that characteristic is considered a diagnostic criteria (which is not to say individuals with autism are not creative, many are, but not usually imaginative and "seeing stuff, hearing voices deal" a different thing really)
but then there are kids that seem to have features of psychosis but definately have features of autism, and no social factors (abuse etc.) contributing)
for years i wondered if this was due to some sort of infection, i thought viral, now could it be bacterial, that contributed to this?
my premise, just as a lot of these disorders of neurological systems; many different causes
congenital lyme could be one, or lyme infection early on, for a particular presentation of lyme along with genetic factors--some which have clearly been identified
if a really good study was to be done, the researchers would not just test the patients for Bb (see, that is not a random sample at all, especially if it is llmds doing the testing)
but also test a a group of age matched controls, randomly selected (so would include kids w/out learning problems, with learning problems, autism , etc, to reflect a normal pop.) I would also add a different group, age matched kids with autism not seen in a lyme practice ....just to see what crops up
In any event: so my theory, Bb may cause autistic like features in some children, and the likely subgroup are those that have some degree of psychosis (so more diffuse brain damage). I also suspect that these individuals, woul generly not seem as "autistic" , perhaps just within the autism spectrum
(and also keep in mind it is likely that there are kids with Bb AND genetic based autism)
But, in my mind, Bb could not be the causative factor at the 100% level!
Anyone else want to comment on thoughts
again, all just my thoughts and opinions....
the distribution study in endemic areas could be interesting
but I'm not sure what will come up
with the genetic factors playing a role
on another note, when i started in the field so much was ignored about diet etc., but now mainstream journals even refer to treating heavy metals , changing diet, how all these things play a role in improving outcomes for individuals with autism.....
[ 10. January 2007, 10:44 PM: Message edited by: jif ]
Posts: 208 | From Santa Fe | Registered: May 2006
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