I know of a young family that lives close to me. The mom has PCOS and terrible degenerative arthritis in her knees. The dad has debilitating migraines, one son has a congenital heart defect and Aspberger's/autism. Their daughters also have Aspberger's/autism (one is a toddler), and the other son has ADHD. Mind you, all of the kids are under 8.

We convinced the mom to have the boys tested for Lyme. They ran Western Blots through ARUP (which is like Quest or LabCorp). One of the boys had band 18, and both had 41 and lots of equivocals. At that point, the mom didn't do much more about it since their tests weren't "positive".

The dad is very resistant to the idea of Lyme Disease. They all sound so Lymie to me and I really would like to help them.

Here is the link to their story: http://www.transcriptbulletin.com/20041223cope.phtml

If you have any info on Aspberger's/autism and Lyme, could you please post it here or email me? They are struggling...

Thank you so much. I really appreciate all of the knowledgable people on this board.

Shelly :-)
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plus there is no really good evidence that this is indeed lyme. if it is of an infectious etiology, it could just as easily be a mycoplasma.

you can ask them to try an igenex test, but if that is equivocal i don't think they will try any form of treatment.

you can see if they are willing to try a trial exam of abx therapy and see if that helps symptoms.

i would recommend minocycline, although it takes a long time for minocycline to build up in the body.

even if it's not lyme, minocycline works on l-form bacteria, like mycoplasma.

it's cheap too, and long term usage is most often covered by insurance. see if that is not asking too much.

you can print the following article for the father to read :
http://pn.psychiatryonline.org/cgi/content/full/39/23/25-a

the article discusses the use of D-cycloserine, an antibiotic and its effect, in trial, on autistic children.

D-cycloserine interferes with the bacterial cell wall synthesis, like minocycline.

I'm not sure anyone can convince someone of anything either but hearing others with somewhat the same stories can help.

My son has aspergers/autism spectrum strongly suspected and lyme congenitally. My daughter also has some kind of autism spectrum with adhd and lyme congenitally.

Both kids physically improved on lyme treatment - now we can see what symptoms are from the Asperger/adhd or whatever you call it.

In our case the family history of mental disease w/o lyme is prevelant so it was a rough dx to make.

I'm just glad we have a wonderful LLMD who helps with the whole thing.

What a wonderful friend you are for trying to help this family.

I read their story. Heartbreaking is an understatement. The good part is the mother might be more receptive than the father; and she is able to do research, so I'd give her the information.

If you overload them with info too fast, they will repel. I did that with my brother and failed miserably. He just quit another job because the day-to-day routine is too much for him physically. Even my objective husband believes my brother has LD.

My husband, grown son and I all have LD. I was misdiagnosed for 5 years with myasthenia gravis. I'm trying to think back & remember what I would have done if someone suggested LD.

In retrospect, it would have taken a while to convince me. It probably would have been a slow process for me. Also, back then, I didn't have the internet. And yes, it is extremely hard to overcome a label so adamantly given by a Lyme-ignorant MD.

I wish a friend had suggested LD to me 14 years ago. I wouldn't have declined so much.


Hopefully, you'll get lots of ideas & links from some of the mom's with young children with neuro LD. As Betty & Lymesux said, she could identify with them the most.

I realize the Mother probably wants to see literature showing a direct link between the LD & the autism. Sorry, I don't have that.

Wish I had just the perfect information packet for you.

If you go to Melissa Kaplan's huge website, it explains everything from explaining Western Blots to the constant misinformation about LD. Below is an excellent article, also from her site.

Neuropsychiatric Manifestations of Lyme in Children.

You'll need to scroll down the page to get to the heading, "Encephalopathy, Neurocognitive Impairments and Depression in Lyme."

http://www.anapsid.org/lyme/

Also, here are 19 Reasons Why a Seronegative Test Result Might Occur:

http://flash.lymenet.org/ubb/Forum1/HTML/001744.html

As you know, both the FDA and CDC say Lyme is a clinical diagnosis----I THINK the CDC statement appears at the bottom of most WB lab results. Wish the mom understood that.

After reading information on Lymenet, those equivocals are positives. As Matthew Goss' website says: you can't be just a little bit pregnant.

However, I realize only an LLMD could diagnose that family with LD and try to sort things out.

But even people with chronic conditions can benefit greatly from seeing an LLMD & getting IGENEX tested. It's my understanding the LD will only worsen other chronic conditions. IMHO, all LD is neurological to one degree or another.

My LL/FNP distributes this introductory booklet about LD. You can download from the link below:
www.LymePa.org

"Lyme Disease --- The Basics"
A plain-language introduction to tick-borne diseases.

Published by The Lyme Disease Association of Southeastern Pa., Inc.

It has a detailed symptom list and asks if you have been diagnosed with: ALS; Psychological/psychiatric symptoms & ADHD.

The booklet also lists web references such as Lymenet, ILADS, Dr. B's Guidelines, and LD research at Columbia University.

When the timing is right, I want to give this booklet to my brother.

Hope this helps.

Best Wishes,
Jan

The test is $250 and is not covered by insurance, but it would put the matter to rest.

If I had gotten an equivocal or negative from IgeneX, I would have sent my blood sample there.
http://www.bowen.org/information.htm