Lyme disease and Autism

[Guest guest]

Hi All,

I have been off the list for awhile because I broke my right arm on

Jan. 2 (yes, of course I am right-handed)and have been trying to

recover from that. To make a long story short, the bone did not heal-

-not one bit, so I started looking into reasons why. A friend

suggested that I might have Lyme disease because I complained of

being so tired. Saw a specialist and even though I've had 2 negative

tests he was convinced I had lyme. Well he was right.

Only 2 hours after starting Doxycycline my face went totally numb.

Over the next few days every joint that ever bothered me was

excruciating. I became even more exhausted. These are all signs

that I have Lyme disease as the Doxycycline is killing off the

spirochetes. Then I remembered (duh!) that I had found a bulls-eye

rash over 9 years ago on my leg that I had totally forgotten about.

(not everyone gets a rash). And all this time I thought I was

exhausted from not sleeping for the last 3 1/2 years since my son was

born...

Anyway, my point is that my son, who tested positive for Lyme this

summer (we thought due to a recent tick bite) most probably has

congenital Lyme disease, which many Lyme specialists believe can

manifest as autism. So I would like to encourage all of you--ALL OF

YOU--to seriously consider whether you might have had Lyme during

your pregnancy and/or whether your child could have been bitten. For

those who think this is a rare disease, that you can only get it if

you camp, live in the woods, etc., please know that most Lyme

literate doctors know that Lyme is AN EPIDEMIC IN THIS COUNTRY AND

ABROAD. There are thousands upon thousands of undiagnosed cases

because doctors are ignorant about the symptoms and they rely on

blood tests which are NOT accurate. I never in a million years

suspected I might have Lyme disease, and in fact I may have had it

all my life and the rash 9 years ago was just a reaction to yet

another bite.

There are some studies showing that autistic children improve on

antibiotics but then regress. If in fact the autism is caused by

Lyme disease, they would regress if they weren't kept on the

antibiotics long enough. You have to keep them on the proper

antibiotic to kill the spirochete for the appropriate length of time,

which varies depending on symptoms and how long you've had it. I was

actually hospitalized with a severe Herxheimer reaction (102 fever,

passing out, vomiting, unbelievable pressure in my head where I was

beating my hand against my head to try to stop the pain, excruciating

body and neck aches, etc.)which indicates very late stage Lyme. This

happened last week after being on IV antibiotics for about 2 weeks

(only a week after almost bleeding to death from stomach ulcers

caused by pain medication given to me after my surgery for the broken

arm. Some fun!

Anyway, when we treated my son this summer for Lyme after about 2

weeks of Amoxicillin he was the BEST I've ever seen him--no symptoms

of any kind (he has improved tremendously through diet alone but

there was NO sign of any behavior problems). He was absolutely

NORMAL, which was an odd feeling in and of itself. Once we ended the

Amoxicillin after 4 weeks he slowly regressed again. Obviously we

did not treat long enough because it is congenital, so he is back on

Amoxicillin and will soon be switched to another type.

PLEASE all of you out there, consider this as a possible contributing

factor for your children's problems. DO NOT rely on Lyme tests

because they are not accurate. Find a Lyme literate doctor and go on

the antibiotics yourself--if you have it it will be OBVIOUS. Then at

least you will know if this is a possibility for your child.

I will try to keep you posted on our progress for those who are

interested.

Just so you know, gluten/dairy intolerance, mold allergies,

food/chemical sensitivities, yeast problems, neurological

problems,etc. seem to be rampant among the Lyme community. And when

I was having the Herxheimer reaction, if I hadn't had a 102 fever and

could have gotten out of bed, I would have been beating my head

against the wall to try to stop the pain; it was that bad. This

should tell us something.

I hope this has been enlightening, and if nothing else, you can at

least be grateful that you're not trying to cook gluten, casein, corn

and soy free with a broken right arm, a stomach full of ulcers, and

late-stage Lyme disease where every single solitary bit of your body

hurts like hell. Be grateful tonight and I hope this information

helps someone...