Re: Congential Lyme Survey

[Guest guest]

Hi Kari,

Thanks for the nice welcome! As far as my boys having congenital Lyme, I have

never been diagnosed with Lyme, but have often thought that I could have it and

passed it to my boys. I have 3 boys- 2 with Lyme and 1 ok for now, but he gets

sick quite often.  I did breast feed all my children. The reason why I feel

like

I might have Lyme (although I am active and healthy now) is 2 years ago I was

diagnosed with Hypertrophic Cardiomyopathy. For years, I was told I had Mitral

Valve Prolapse. I was diagnosed with MVP in my early 20s. In my teens, I was

diagnosed with mono. In my early 20s I was sick quite often. I developed

pre-eclampsia with my 3rd child and delivered early. He was pumped full of

antibiotics right after birth. Although I did breast feed him, he doesn't have

Lyme (or if he does, he isn't manifesting symptoms at this time). When I was

pregnant with Caleb (my sickest child), I remember having horrible rashes on my

hands and wrists. I was very sick with bronchitis. I breast fed Caleb for 13

months; (not as sick as Caleb) for only 4 months.

As a child and teen, I was a very out-doorsy person. I lived and played in

wooded areas. I worked for 2 summers (in my teen years) at a girls' camp in

up-state New York. So, there is a possibility that I could have gotten Lyme.

I hope this is helpful information for your research. I am interested in what

you will find out. I am wondering if other mothers of children with Lyme had

pre-eclampsia?

Again, thank you for responding to my post, and I look forward to the support we

can all offer one another.

________________________________

From: endomr <ktdommer@...>

Sent: Thu, October 28, 2010 8:28:48 PM

Subject: [ ] Congential Lyme Survey

 

I had an appointment Monday with our ILADS doctor. I asked him what the

probability of my oldest son having the same coinfections that my youngest and I

have. We are similar with bartonella, babesia, mycoplasms and HHV6. I asked him

if we assume k will have all of that too. He said there have been very few

studies on congenital Lyme and definitely not a large study. So I am going to

survey those families with congenital Lyme here on the forum. Please respond to

the following if you can.

Did you know you had Lyme prior to giving birth?

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

Did you nurse? How long?

Is their Western Blot similar to you? Are the coinfections similar?

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

Here is my reply:

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? 2 years the oldest, 6 months the youngest

Is their Western Blot similar to you? 1 is, 1 is weakly positive

Are the coinfections similar? 1 is, 1 had it drawn tonight

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

I got the Lyme Times and read their children's special issue. Due to Lyme, I

can't remember what I read. Ha!

Thanks everyone,

Kari

I

[Guest guest]

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

How many children do you have total? 4 How many with Lyme disease? 2

Did you nurse? yes How long? 15 months

Is their Western Blot similar to you? No Are the coinfections

similar? No

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

being told it's a 50/50% chance he would have it.

I have had my son tested 4 times and he tests negative each time. This time I

went with MDL labs because I can't afford IGENIX. I will see

his results on Tuesday. My other 2 children who have Lyme/Co Infections didn't

get it congenitally they had a number of tick bites of their own.

[Guest guest]

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

How many children do you have tota2l? How many with Lyme disease? 2

Did you nurse? yes How long? 9 months and 11 months

Is their Western Blot similar to you? No Are the coinfections

similar? Yes

Anything interesting you've learned about congenital Lyme you could share? It

can lurk with subtle symptoms for years until diagnosed. It flared in my older

one at age 7 and the younger one at age 10. In retrospect, we saw a lot of

signs and symptoms but no one could tell us what they meant and they were so

nebulous that no one would have thought of Lyme (unless we had been diagnosed).

I found the article on Betterhealthguy about Barbara Corson and the

manifestations and tests for pediatric/congenital Lyme really instrumental in

helping us figure out the Lyme was congenital in both girls.

________________________________

[Guest guest]

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

How many children do you have total? 2 (twins)

How many with Lyme disease? 2 (1 severely, 1 mildly)

Did you nurse? yes How long? 6 months

Is their Western Blot similar to you? yes

Are the coinfections similar? Yes for the daughter with severe LD, no for the

daughter with mild LD

Anything interesting you've learned about congenital Lyme you could share? my

daughters weren't diagnosed until they were 15

(we live in Australia, so had to travel to the US for dx and treatment). The

daughter with severe LD has almost exactly the same

symptoms, and they appeared in almost the same order as mine.

[Guest guest]

How many children do you have total?  2

How many with Lyme disease? 1

Did you nurse?  Yes

How long? 8 mths

Is their Western Blot similar to you?  No results yet

Are the coinfections similar? Yes

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

 My daughter has been sick since birth, too many health problems and conditions

to name here. I found out I had Lyme 2 yrs ago (misdiagnosed for 15 yrs with

fibromyalgia) and only realized a year ago after researching about Lyme that she

may have had congenital lyme this whole time, When I went through the symptoms

of congenital lyme she has/had them all over the years, she is 13 yrs old now.

Neither of us have gotten any treatment yet but I will be starting antibiotics

next week. I hope to get her treatment eventually too.

Can  you put all these answers together somehow in a chart or something so we

can all see how your survey turned out?

Thanks!

B.

 

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

[Guest guest]

> Did you know you had Lyme prior to giving birth? Yes.

> How many children do you have total? 1

> How many with Lyme disease? 1 with Lyme Induced Autism (now high

> functioning due to treatment.)

> Did you nurse? Not at all.

> Is their Western Blot similar to you? Don't remember.

> Are the coinfections similar? Not sure but we think so. I had 3

> coinfections. We think she has at least bartonella.

> Anything interesting you've learned about congenital Lyme you could

> share? Lyme Disease can cause Autism and it can be passed on even if

> you do everything... antibiotics during your pregnancy and don't nurse.

Jen

Lymie parents, 5 yo Lymie/Aspie

[Guest guest]

Jen:

Thank you for taking the time to reply. It has been interesting the similarities

and differences in the survey responses. There weren't a lot of moms that knew

they were infected. I'm sorry that despite doing what the doctors told you to

do, your daughter got Lyme. It must be a relief that she is getting better. Is

it possible for a full recovery from Autism as a side effect of Lyme? I'm sure

you are spreading the word on your experience.

Is your daughter old enough for kindergarten? Are you well?

Kari

[Guest guest]

Hi Kari,

Dr. J has seen this quite a bit and says she will get well, meaning that

she will not fit into the Autism criteria anymore and she's almost at

that point now. However, she is still reliant on the antibiotics for

that. We're hoping the Buhner protocol will change that. I am unwell...

was undiagnosed for 9 years and almost dead at that point. I've come a

LONG way but honestly I'm still suffering quite a bit and can't get off

antibiotics. My husband contracted Lyme and Babesia from me in '96 and

was diagnosed in 2000 with me and he is also unable to stop the

antibiotics without a relapse but is now able to work full time although

sometimes it is a big struggle for him. We're lucky we have had and now

have excellent LLMDs.

Lymie parents, 5yo Lymie/Aspie

On 11/22/2010 9:35 AM, endomr wrote:

>

> Jen:

> Thank you for taking the time to reply. It has been interesting the

> similarities and differences in the survey responses. There weren't a

> lot of moms that knew they were infected. I'm sorry that despite doing

> what the doctors told you to do, your daughter got Lyme. It must be a

> relief that she is getting better. Is it possible for a full recovery

> from Autism as a side effect of Lyme? I'm sure you are spreading the

> word on your experience.

> Is your daughter old enough for kindergarten? Are you well?

> Kari

>