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» LymeNet Flash » Questions and Discussion » Medical Questions » Cogenital Lyme. . .need to find other families

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Author Topic: Cogenital Lyme. . .need to find other families
LymeNet Contributor
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I'm looking to find out about/talk to/share research with people whose kids have congenital lyme, but I'm having trouble finding people who were already late stage when they conceived.

It seems like so much of the info/people out there were infected during pregnancy, not years and years before.

I'm curious about how the disease and treatment plays out in older kids. As some of you know, my kids are 12 and 4 and the 12 year old just tested Igenex IgM positive. I am sero-negative, but low cd 57 and clinically diagnosed. Funds are tight and the 4 year old has not been tested yet. CD 57s are being taken on both of them on Monday.

Posts: 564 | From Tick Hell | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
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Hi Jeanne:

Sorry you are dealing with this. It's so much more heart-breaking when it's your own children.

I haven't read your other posts so maybe someone has already suggested this to you. Some parents believe that lyme has caused autism-like symptoms in their kids and you might find more info at that site:

Take care,


Posts: 590 | From Canada | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
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I was chronic during my pregnancies. Not 100% sure I passed it on to my kids, but have my gut instinct, which is yes.

Here are symptoms noticed when they were growing up. They are all adults now. By the way, I breastfed my two younger ones each for about a year, only did a few days with oldest, which may explain why he seems to have fewer symptoms.

Oldest, had lung problems beginning when he was 1 1/2. He had croup at that time and was hospitalized. As a youngster he developed asthma. Didn't think a lot about it since it runs in his dad's family.

He seemed to get bronchitis or pneumonia every winter until he began getting flu shots. Not sure if that was the difference or not.

Last winter, at 31 he was hospitalized for 16 days with a severe case of pneumonia. It began shortly after he ran in a half-marathon.

He is a triathlete, so that's not that unusual for him to do. He still feels some of the effects from that infection, even though it's been 9 months now.

My second has a congenital hearing loss. Due to Lyme? Who knows? No one seemed to have an answer to that question when it was discovered at age 5. He was late talker, but then never stopped.

He had a lot of behavioral issues as a young child. He mellowed a bit as he got older, until his teens, when it all broke loose.

We sought help for him, because it was such a turn around for him, but everyone brushed it off, except his high school guidance counselor, who is a jewel. : )

He was doing a lot of risk-taking behavior, getting arrested for spraying graffiti late at night when he was supposed to be at a friend's house sleeping over.

Many in and out of school suspensions, bus suspensions for things such as blurting out things that were inappropriate. He would be very contrite and in tears later when confronted about it.

His dad and I separated late in his junior year in high school. He became very protective of me at that time, and still is.

Went to art school and had a lot of ups and downs during those four years. His senior year we got a call saying he was having some problems.

His dad went up to the campus and spoke with social worker on campus and she helped line him up with a psych doc in Manhattan who was certain it was all drug-induced.

This was his first psychotic episode. The doc told us if it wasn't drug-induced we didn't want to know what it meant. A lot of help that was!

His senior year was full of ups and downs. He was definitely manic at graduation, looking back. He decided to stay in NYC to find work, but wasn't able to do so.

Finally told me he was coming home. I still remember his call to me, telling me he knew when it was time to fold 'em, and this was it.

Turned out some of his friends had been giving him money and helping him out, but realized through phone calls from around the country to him and each other that he needed to be at home and more help than they could offer.

They got him home, but didn't tell us what was going on until the next day. By then he was off wandering the streets. Was hospitalized that night and ended up being dx'd with bipolar disorder.

Out of hospital for July 4, stupid reason, then back in by the next Monday, after wrecking my car and then wandering the streets, trying to find a way to get somewhere. He went by my church, but it was too early, so no one heard him when he rang the bell.

It's been an up and down battle since then. I think he finally began figuring it out last year at this time. He was off his meds, again. However this time it was different.

He had enough awareness to know he didn't want to be arrested, taken to hospital by police, wanted to go on his own. Tried to avoid hospital, but it didn't work.

Went willingly. Now he's getting things in order, is living on his own through a local program, and has aspirations of becoming an art therapist.

He has obvious bart rash and my LLMD would love to tx him. He is uninsured, and I don't want him to get another dx on his list before he finds insurance.

Then there's my youngest. Her childhood symptoms were different. She had a lot of tummy aches in school, which I now realize were probably real.

As a soccer player she would often crawl around the house following games, especially after tournaments, and complain her legs hurt too much too walk. We thought she was being a drama queen. Now I'm not so sure about that.

As an adult she has had problem with frequent conjunctivitis and a lot of GI stuff. She has had to cut out certain food, coffee being the one I remember best, so she can keep her IBS under control.

As a law student it's difficult to function without coffee, but I think she substitutes Diet Coke.

However I watched her today rushing around helping me get the house ready and thought, I don't ever remember having that much energy!

I often wonder if they are just walking time bombs, ready to go off, but they don't want to listen to the possibility of Lyme, so I'm stuck in a hard spot.


Posts: 2407 | From over the river and through the woods | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
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I was chronic for all of my pregnancies.

One child has been diagnosed and treated for 8 months. She did very well with treatment. Her herxes were minimal, she was totally functional during them. She had few symptoms - headaches, learning disabilities, knee pain, heel pain.

I suspect it in two others.


Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
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I was infected about ten years before my first pregnancy, fifteen before my second. Both my children are congenital Lyme, and had a whole host of medical issues always; they are 19 and 13 now.

I also had five miscarriages.

NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
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I feel your pain and I am soooo sorry!!!

I was infected about 5 to 6 years prior to my pregnancy with my 14yr. son who is very ill and sero-positive WB and Babesia.

I am also sero-positive for both and now my husband is too.

I was not diagnosed until 2 and 1/2 years ago, but was pretty sick off and on before pregnant.

Please feel free to PM me if I can help in anyway!!!

P.S. My son sees Dr. Jones and he was so sweet to do much of the blood work for my son and my husband for FREE!!! He knew that we were all + and paying for travel and treatment. We were VERY BLESSED!!!!

Posts: 351 | From Georgia | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
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I became symptomatic for Lyme this Spring at age 37. I had tingling, nerve pains, nausea, fatigue, and a weird rash on my face.

I assumed it was a recent infection but had my two girls tested anyway.

The oldest (age five) was CDC positive bu Igenex and the younger one (age four) has lots of positive bands but a negative result.

Now I suspect I have had Lyme for a very long time (perhaps it's congenital as my mother told mne she picked many many ticks of herself as a kid) and since I KNOW neither one of my girls ever had a tick bite.

The oldest is very smart but physically weak and somewhat slow. She was a colicky baby and has a bad temper.

The youngest complains of tummy aches and sore throats frequently and is on Miralax for frequent constipation.

We go to see Dr. C next month adn we'll see what he recommends about starting treatment.

I hope we can get it under control at a young age so they can have healthy lives.

If I had known what was wrong with me before having kids (hypothyroid beginning as a teen, always tired, brain fogs, muscle weakness, etc.)I never would have had kids because I wouldn't have wanted to take the risk that they'd have to deal with a chronic illness all their lives.

Diagnosed with :yme and mycoplasma pneumonia Aug 08.
Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber

Posts: 183 | From all around | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
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im congenital my 2 brothers are as well although they remain functional enough to deny it as of now.

time will tell if that remains the same.

it happens, and it happens all the time.

what spesific info do you need?


"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
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Thank you. Keep the stories coming. I want to know my kids aren't alone. This really helps. I'm in Minnesota. Should I call Dr. C? for a visit?
Posts: 564 | From Tick Hell | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator

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