posted
ok, so results in for the other 2 children. we are now five for five positive.
just an intersting note for those in doubt if it can be transferred in utero, there is NO WAY that my youngest contracted this if not from me. She was born after we were already living abroad in a country with no lyme disease whatsoever.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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Would your LLMD in NY treat the children? Or maybe they can see Dr Jones in CT when you come to the States.
You might check out Miracle Flights or Angel Flights. They fly sick children for Medical treatment. I don't know if they work outside the US, but it would be worth looking into.
I have 4 with Congenital or Breastmilk transmission. PM me if you ever want to chat.
Have you tested your husband? Mine is CDC positive on both his IGG and IGM. So is my mom. The LLMD's think I am Congenital as well.
Lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
That is a lot to deal with! Are they real sick? How is your health?
to answer your questions: husband not yet tested, but not symptomatic
children 14 yr old-neuro lyme and all that entails, including probabable autonomic stuff. IGG pos
13 yr old IGG pos, not overtly symptomatic, unless you include eye muscle issues and very minor muscle tone. hates reading. when he was about 3 a neuro-opthomologist suspected a brain tumor because of some abnormality.
11 year old IGG positive-chest pain, murmur, anxiety, learning issues, migraines
8 year old IGM positive- ear-nose-throat issues not alleviated by surgery. General malaise. pos also for epstein barr igm and igg
4 year old- unless you want to include her temper, until recently not symptomatic. she has been complaining a lot lately about her legs hurting. Also, she seems to not have an urge to urinate anymore, even after a full nights sleep. This concerns me a lot.
Me? neuro-lyme, with ANS involvement and severe muscle issues. I'm on oxygen often at home. Taking mino, trying to build up dosage. not easy. mino is playing with my mind.
Been on it for a couple of months, seems to be slight improvements followed by crashes. having what are either seizures or periods of "shock".
Thanks for the idea about the flights. My children saw a doctor in the US last month, not sure I'm as comfortable with him as with my doctor. I'd like for them to be seen by Dr C in PA at some point.
Very concerned how this is going to affect their future. We live in a very family-oriented religious community. I'm feeling overwhelmed, but taking it one step at a time. Very grateful for my friends.
Unless I misunderstood their doctor, I got the feeling that their being IGG pos is not as significant as if they were IGM positive. My information has been otherwise, as the antibodies cycle. This made me a little uncomfortable with their doctor.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Oh! I will be praying for you all! The mino is rough. It did help me and my daughter a lot. Char
Posts: 1230 | From US | Registered: Nov 2005
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posted
I'm so sorry for you and your children. I cannot imagine what you are all going through.
However, my current llmd told me that even though I am going through my second round of CORRECT treatment, I will be able to get pregnant by next spring.
He also said that it would NOT be passed on to the fetus.
Are you positive it was passed on in utero? How do you know? Anybody know if it is possible to get pregnant and not pass it on to the fetus?
We really want more children!
My prayers are with you and your children. May God's healing touch be felt by you all!
Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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Wow, my heart goes out to you and your family This disease is rough enough for one person in the family to have, but to have all your children infected must be very difficult.
Take care, one day at a time am36 Your friend Cassie
-------------------- Posts: 564 | From Toronto Ontario Canada | Registered: Jan 2002
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Theoretically our older four could each have been individually infected, as we were living in a highly endemic area for 2 years. (although to say that four children each received their own bite, none of them developed a rash etc etc, is not probable)
Our youngest never lived in the US. The only time she was there was for two weeks in the dead of winter two years ago. So it's pretty much impossible that she was not infected in utero or nursing.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
You said" MY youngest has never lived in an endemic area" "We have NO lyme here"
How are you positive that there is NO lyme where you live, where on earth is that??? According to the ducks "We have NO lyme here either"
Hasnt your youngest ever traveled back over to the Northeast states for a visit, or to that doctors appointment???
And ticks could not have been moved with you, pets or belongings to the tick free area(whatever that is). Birds dont fly from here to there??
I have heard they have lyme worse in other areas of the world than the USA!!
Take care of you and your kids, sure is the pits to have so many sick in the family!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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