Re: answers to congenital lyme questions

October 29, 2010

Â

Did you know you had Lyme prior to giving birth? No

How many children do you have total?Â 2 How many with Lyme disease? 2

DidÂ you nurse?Â yes Â How long? 8 mths each

Is their Western Blot similar to you?

Are the coinfections similar? Yes with one, the other- not sure yet

Anything intesting you've learned about congenital Lyme you could share?Yes. I

agree with another posted response:Â " it seems congenital lyme symptoms aren't

as

pronounced as those children who have been bit by a tick " . My older son was bit

by a tick at about age 1 and he doesn't have the severe symptoms that my

younger, unbitten son has had.Â I don't know if it's that he doesn't have the

co-infections or that my older son started producing antibiodies after his tick

bite.

October 29, 2010

I also agree with those who said the symptoms are different for those who have

congenital lyme vs tick bite. In my own kids, my firstborn had strong

hyperacuity and light sensitivity and sensory integration issues (super

sensitive to textures etc) from birth. Over her early years, while she seemed

mostly normal, she had a strange tendency to look cross-eyed at times (they

never could find anything) and as an infant she had a nighttime cough (they

dismissed as new parent hysteria) and she would say she was tired or have

" growing pains " at 4-5- etc. At 2 she used to have what I described as " daytime

night terrors " where she would be sitting playing quietly and all of a sudden

completely freak out and start screaming, flailing, crying, hitting her head on

the floor. Then I would have to hold and restrain her and she would thrash

until she fell into a sound sleep and she would wake up fine. No doctor could

explain this to me. They kept interpreting it as a " tantrum, " which I most

certainly was not (she had those too, and they always came of a clash of wills)

Her little sister was born with horrific colic but an otherwise very cheerful

personality. At age 3 months she got RSV and ever after had terrible asthma,

treated with prednisone (oh noooooo...) and then got tonsils out at age 5. No

more asthma. The ADHD signs were kicking in by age 4. Then she was diagnosed

with auditory processing disorder at age 8, and bipolar at age 10. She was

complaining intermittently about ankle pain that the doctors thought was jut

attention seeking because her sister had full body pain by that point. Then she

was bitten by a tick at age 10 1/2 and shortly afterward was diagnosed with Lyme

and Co. Since treatment, when she is doing well she is off all psych meds

including Ritalin. When she is stressed (school day after day, tired,

overworked from showing up at school), whereas her sister goes into full body

pain, my younger one goes into increased neuropsych symptoms. Back on Ritalin

(reduced amount) and so on.

After they were diagnosed, I went through their copious medical files to try to

determine when they might have been infected. When I noticed the many diffuse

symptoms they had since birth, I asked if they might have congenital Lyme. Then

my husband and I both tested positive. And the beat goes on...

________________________________

From: <ecckwalk@...>

Sent: Fri, October 29, 2010 2:33:26 PM

Subject: Re: [ ] answers to congenital lyme questions

Did you know you had Lyme prior to giving birth? No

How many children do you have total? 2 How many with Lyme disease? 2

Did you nurse? yes How long? 8 mths each

Is their Western Blot similar to you?

Are the coinfections similar? Yes with one, the other- not sure yet

Anything intesting you've learned about congenital Lyme you could share?Yes. I

agree with another posted response: " it seems congenital lyme symptoms aren't as

pronounced as those children who have been bit by a tick " . My older son was bit

by a tick at about age 1 and he doesn't have the severe symptoms that my

younger, unbitten son has had. I don't know if it's that he doesn't have the

co-infections or that my older son started producing antibiodies after his tick

bite.

October 30, 2010

Did you know you had Lyme prior to giving birth? No

How many children do you have total? 1 How many with Lyme disease? 1 suspected

Did you nurse? yes How long? 13 mths more or less

Is their Western Blot similar to you? Her blots look just like my first

" negative " blot with just band 41 reactive

Are the coinfections similar? Don't know yet. I test negative for all

co-infections but my LLMD says I have many based on symptoms.

Anything intesting you've learned about congenital Lyme you could share? I would

like to know whether having congenital Lyme puts them at tremendous increased

risk of getting very sick if they are then also bitten by a tick. Anyone know?

>

> I also agree with those who said the symptoms are different for those who have

> congenital lyme vs tick bite. In my own kids, my firstborn had strong

> hyperacuity and light sensitivity and sensory integration issues (super

> sensitive to textures etc) from birth. Over her early years, while she seemed

> mostly normal, she had a strange tendency to look cross-eyed at times (they

> never could find anything) and as an infant she had a nighttime cough (they

> dismissed as new parent hysteria) and she would say she was tired or have

> " growing pains " at 4-5- etc. At 2 she used to have what I described as

" daytime

> night terrors " where she would be sitting playing quietly and all of a sudden

> completely freak out and start screaming, flailing, crying, hitting her head

on

> the floor. Then I would have to hold and restrain her and she would thrash

> until she fell into a sound sleep and she would wake up fine. No doctor could

> explain this to me. They kept interpreting it as a " tantrum, " which I most

> certainly was not (she had those too, and they always came of a clash of

wills)

>

> Her little sister was born with horrific colic but an otherwise very cheerful

> personality. At age 3 months she got RSV and ever after had terrible asthma,

> treated with prednisone (oh noooooo...) and then got tonsils out at age 5. No

> more asthma. The ADHD signs were kicking in by age 4. Then she was diagnosed

> with auditory processing disorder at age 8, and bipolar at age 10. She was

> complaining intermittently about ankle pain that the doctors thought was jut

> attention seeking because her sister had full body pain by that point. Then

she

> was bitten by a tick at age 10 1/2 and shortly afterward was diagnosed with

Lyme

> and Co. Since treatment, when she is doing well she is off all psych meds

> including Ritalin. When she is stressed (school day after day, tired,

> overworked from showing up at school), whereas her sister goes into full body

> pain, my younger one goes into increased neuropsych symptoms. Back on Ritalin

> (reduced amount) and so on.

>

> After they were diagnosed, I went through their copious medical files to try

to

> determine when they might have been infected. When I noticed the many diffuse

> symptoms they had since birth, I asked if they might have congenital Lyme.

Then

> my husband and I both tested positive. And the beat goes on...

>

> ________________________________

> From: <ecckwalk@...>

>

> Sent: Fri, October 29, 2010 2:33:26 PM

> Subject: Re: [ ] answers to congenital lyme questions

>

> Did you know you had Lyme prior to giving birth? No

>

> How many children do you have total? 2 How many with Lyme disease? 2

> Did you nurse? yes How long? 8 mths each

> Is their Western Blot similar to you?

>

> Are the coinfections similar? Yes with one, the other- not sure yet

>

> Anything intesting you've learned about congenital Lyme you could share?Yes. I

> agree with another posted response: " it seems congenital lyme symptoms aren't

as

>

> pronounced as those children who have been bit by a tick " . My older son was

bit

> by a tick at about age 1 and he doesn't have the severe symptoms that my

> younger, unbitten son has had. I don't know if it's that he doesn't have the

> co-infections or that my older son started producing antibiodies after his

tick

> bite.

>

October 30, 2010

I know that my scond daughter has congenital Lyme and was bitten by a tick at

the end of 5th grade. She got very sick, very fast, with Bartonella, Lyme,

Erlichia, Babesia and perhaps others -- we didn't even bother to test at the

point where we knew she had all of these.

Natasha

________________________________

From: margaret_behrns <spamneggs@...>

Sent: Sat, October 30, 2010 6:53:52 AM

Subject: [ ] Re: answers to congenital lyme questions