My baby, me and Lyme - several ?s

So, I posted a while back about my baby's PCR cord blood being positive.  My LLMD said she should be treated and was very sad sounding on the phone, like my baby didn't have a chance.  He said to go to Dr. J in CT, that he doesn't treat children.  We went to Dr. J in CT and he said "she's not a Lyme baby, she's perfectly healthy, look at her. The DNA detected in that cord blood could have been dead DNA from your treatment throughout pregnancy.  If you take no abx during pregnancy, it's 50/50 chance of passing it on, if you take one antibiotic, it's 25% chance and if you take two abx it's like 1% chance of passing it on ---and you were on two abx during pregnancy."  He wouldn't even make an appointment to follow-up.  So, when you have the two BIG WIGs in Lyme telling you two completely different things, you feel conflicted.  At first, I was relieved at what Dr. J in CT said, but of course, as a mom, I worry in the back of my mind.  She's fine, just reflux and a big port wine stain (birthmark).  Otherwise, she's developmentally ahead of the game at four months old.  That's really my first question - in general, what do you all think of this situation?  I'll post my second question in another thread....

[JackieCalifornia]

Can the baby be tested for Lyme now?  If you keep testing every [3] months, then you'll either have peace of mind or notice to start treating.  In other words, doing everything possible.

[carrie235]

Hope,

I just responded to another thread of yours before reading this one.  Yes, it's the conflicting information that makes us crazy.  I would take Jackie's suggestion and have your baby tested....  Otherwise, you may never feel at peace.

I keep wondering about my kids too.  My son had a tick in his ear after playing down by a creek about a year ago.  This was before I new I had lyme disease.  My daughter noticed it at the dinner table and removed it.  I keep thinking back about that now and wondering if had got lyme from that stupid tick.  Had I known now what I knew then, I would of sent that tick to Igenex for testing and taken him to the doctor immediately for doxy.  I'm torn on whether to have my kids tested or now.  Two daughters, 25 and 23 and son, 16.

Carrie

Carrie

[Hope75]

The pediatric LLMD gave us a urine PCR test kit, but he didn't seem particularly worried if we did it at all.  We've never done it.  It's pretty awkward.  You have to tape this thing to her bottom in hopes of catching pee and then pipe them into tubes and send them to Igenex.  More denial....maybe we should.  

Carie:  Do your kids have any symptoms?

[carrie235]

Hi Hope:

The only one that seems to show issues (GI, fatigue, etc.) is my oldest daughter.  She is getting married and wants to start a family in the next year and I think she wants to get tested, so we may do that.  The other kids are not showing any symptoms.  I did not show any symptoms either until my gallbladder was removed....

Carrie

[JackieCalifornia]

When I was diagnosed with Lyme, I dragged my teenager in to be tested (on the theory that she had been everywhere I had been), and she (like me) was positive for Lyme and babesiosis.  After abx treatment, she said she could feel the difference, that she had been feeling tired all the time but didn't realize it till she was cured.

I'm thinking there are a lot of people walking around with this stuff, but only some of us get slapped upside the head by it.

[Chatterbox58]

Yes, I agree with Jackie, bet a lot of people are walking around with lyme.  I am now worried about my son who just the other night pulled a tick from my scalp with his bare fingers not even thinking anything and then we flushed it.  Now I am worried about myself and my son. Everything happened so fast you don't think.  It's been so long, four years that I have been treated for it and I really should know better.  I didn't know you could have the tick tested until after we got rid of it.

[JackieCalifornia]

Why worried about your son -- that he might have gotten infected by contact with the tick he pulled off you?  I'd guess that if there was no broken skin to let the little germs in, he's probably okay.  (but I'm not a doc, just trying to think it through).  Washing hands well after such a contact is probably a good idea, but hey.  

[wonko]

I don't really have anything to offer here but wanted to comment that Hope's story gives me hope, as I put off starting a family for school and then got sick with this mess in my late 20's, but still would like to have a kid someday...

I'm sure with your vigilance that your baby is in good hands.  It does sound confusing and frustrating, but I'm glad to hear that overall your baby is doing well.

[Hope75]

thank you! I'm glad I can offer some hope.  That is my name:)

[lizzy1210]

Hi Hope, This past summer I got lyme disease and we caught it after a few months. I stopped nursing my baby as soon as I started antibiotics, but our LLMD said we should test both of our kids. The 3 year old did not have it, but the baby did. He has been crankier than our other child was and has a very sensitive stomach, but otherwise seemed fine. Now we are starting treatment on a 1-yr old. We did the urine collection test. It was a pain, but I'm so glad we did it. I'd much rather know now than find out if five years.
Good luck!

[Ricobord]

I am so glad you caught it, and that your kids were tested. How long does the doc expect to treat your baby?

[youvegottobekidding]

Hope,

If you were taking abx all through your pregnancy, then as far as I know Dr. Optimistic is right that baby is probably not infected. He's the one who specialises in kids, so at a guess I would say he probably knows more about in utero transmission than the other lyme doc who doesn't treat children.

I'd get baby tested no matter how much palaver it is, but near in mind you may need to keep testing every 3 months.

I'd be going a bit bonkers if I had your dilemma but if it's any consolation, my son was born with lyme and didn't start treatment till he was 4 as we didn't realise what he had, he's almost cured now.

Babies born with lyme almost always start showing first symptoms at about 8 months onwards. I do think the lyme lies dormant in them till then, so perhaps it isn't doing much harm.

Bad signs to look for are:
baby cries lots - all babies cry, by lots I mean other people comment on it cos they think its wierd
baby cannot sleep for more than tiny stretches as a time (less than one hour)
- If either of these comes on after a vaccination or bad infection like flu you need to be extremely worried
Baby does horrid poos (smell awful, runny, sticky) or is ssuddenly constipated of generally seems to have lots of colic
Baby seems to hate being touched or cuddled (only a few babies get this)
Baby doesn't make eye contact
people ask you if baby is deaf cos she ignores people
baby refuses to wave or do other cute baby things that acknowledge other people
no ga ga goo goo experiments with talking
ANY indication of regression in ANY area of development - eg baby knew some words then stops using them, baby could do some clever thing with a toy then stops doing it etc. Healty babies NEVER develop 2 steps forward 1 step back. I think this is the biggest single clue that baby has lyme.

[JackieCalifornia]

Just a note  -- these recent responses are good information, but they are in response to Hope75's post from a year and a half ago.

[youvegottobekidding]

Thanks for pointing that out Jackie! How come this post got bumped up for no reason? very odd.

[nervousmummytobe]

Lizzy what treatment is your one y o having

[JackieCalifornia]

Hi, I just now saw your post of Dec 3, 2012, inquiring why an old post above got bumped up.

I think it's because Lizzy1210 was browsing (or searching the site for a particular word or words) and she found Hope's May 18, 2011 post, which was on a topic she wanted to inquire about, so Lizzy then posted to Hope's 18-month-old post.

I don't think medhelp sets date limits in their archive.  I used to respond to really old posts too, till I figured out who was still checking in and who wasn't.  Nothing to be done about it, tho I will sometimes respond to someone like Lizzy and say the original poster she is responding too doesn't seem to be checking in lately, just so 'Lizzy' doesn't feel ignored.  

Then I'll often suggest that she reframe her inquiry and post it as a new thread, so it will be seen and get attention from someone with information to provide.  

Annoying to deal with, I guess, but sometimes those old old posts are valuable, so on balance I'd rather still have them accessible.

[Hope75]

Hi all, I'm still here.  I haven't been checking in as I should be.  Would be glad to offer any thoughts or advice to the above posters.  My baby girl is two now and on target for all developmental milestones!  Things are looking good.  AFter Dr. Jones said that she was not a Lyme baby, I did no further testing.  Maybe that is denial, but I'm just not going to look for it if he said not to.  

[Hope75]

PS  Jackie, you're right, I've done the same thing in a search and didn't realize how old the post was.  Is there a setting somewhere that would notify me that someone posted on my thread?  That way I could be sure to respond.  I will look...

[JackieCalifornia]

I don't think there's any way to flag the older posts, and that's okay.  Lyme still is using its same old tricks, so our same old posts are still up to date.  :)

Your baby sounds wonderful, so I wouldn't stress either.  Just ENJOY!!  Thanks for stopping by -- take care.