Tuesday, August 23, 2011

Cord Blood Positive for Lyme



When I began this blog at the beginning of 2010, I promised myself that I would write from a positive perspective. I have every intention of keeping that promise, even though I am about to share some sad news:

Yesterday the cord blood sample we sent out to have tested for Emmett came back positive for Lyme.

I don't have many details yet. I called my OB's office yesterday morning to check on the test results, as I hadn't heard anything. One of the nurses returned my call and said, "Yes, we got the results. Something came back positive for Burg-derrr...I'm not sure how to say that..."

"Borrelia Burgdorferi?"

"Yes, that's it!"

My heart sank. In fact, I think it fell right out of me. And before sheer panic set in, I politely thanked her for the information, asked her to fax it to our pediatrician and my Lyme specialist, hung up the phone, looked at my sleeping baby, all curled up and cozy, and couldn't even cry. I was stunned.

Again, I don't have much information yet. For all I know we could be jumping the gun here--maybe she read the results wrong--she clearly wasn't sure about what she was looking at. Maybe the baby is showing my Lyme antibodies, which would actually be a good thing. Maybe I'm in complete denial, which is very possible. Time will tell.

So, it looks as though this blog has taken an interesting turn to say the least. For those of you that have ever wondered what would happen if your baby did test positive for Lyme, stay tuned. I will continue to record our journey so you can read about our successes and failures with the hope that you will be able to get the help you need and avoid the setbacks we come across.

My LLMD is in the process of reviewing the lab results and will call us after he consults with the most respected and well known pediatric Lyme specialist in our area. That makes me feel a lot better. If we did catch a real case of Lyme, at least we caught it early.

I keep reminding myself that even if this is true, the baby is not in the severe amounts of pain that I've endured. I always forget that I've had twelve years of infection causing damage to my system. We are blessed in the sense that we caught this right away and can take care of it before it becomes a larger problem later in life.

We have an appointment with our pediatrician tomorrow. This could prove to be beneficial or a huge mistake--I'm thinking mistake, but I want to keep everyone involved with our children's health in the loop. Our ped doesn't believe in congenital Lyme transmission (she's not hostile about her opinion and she's great to our children), and I'm wondering what she will do when she sees a positive test result.

As much as I love Lyme doctors, I am a little nervous about having them jump right in and treat our baby, as they tend to be heavy-handed with the antibiotics when treating adults, and I don't want to harm or overmedicate our infant. We figured that the pediatrician will take a conservative approach, the Lyme doctor will take a more aggressive approach, and my husband and I can sort through it all and hopefully find a happy place in between. We are in extremely unfamiliar territory, so we want every bit of information possible, from both sides of the fence.

Our LLMD's office called last night and told us not to panic and that everything will be fine. Emmett has no signs of harm or abnormalities and that we wouldn't even be able to start treatment until he is three months old since his system is so new and fragile.

Emmett does seem strong and very alert, though he has not been as healthy as our first. His umbilical cord stump got infected underneath, and the first week he was home, he had to go to the E.R. for a staph infection. Last week his eyes got infected due to blocked tear ducts. Could be completely coincidental--I just get nervous when frequent infections are present.

For those of you now questioning what I've been writing about all along, I can't say I blame you. I'm not sure how this happened or if these results are even anything serious yet. All I know is that we went by the book, so to speak. We did everything we were told, and I have shared everything that some of the best LLMDs in the northeast have told us:

That transmission usually only happens in untreated mothers.
That being on antibiotics throughout pregnancy will protect the baby.
That even though I may have been feeling like crap throughout the pregnancy, my baby was not being affected

I'm really hoping that this is just a misread of the test results or that there is some explanation for a positive result, because it is so rare. I truly believe that.

There are so many happy, healthy babies out there born to Lyme Mamas. I've talked with these women. I know they exist. Our first born is completely fine for what it's worth.

I would give just about anything to be able to tell the world that my newest son is one of these healthy babies. We will do whatever it takes to get him there.

That said, any moms out there have any experience with a positive IGeneX cord blood test? I recall a comment or two a while back regarding the topic and there was question as to whether it was an active infection vs. presence of mom's antibodies. To the moms that posted, if you're still reading this, will you please let us know how everything turned out for you?

Any info is greatly appreciated.

17 comments:

  1. I am so, so sorry. I don't have any good information, but you and your little one are in my thoughts and prayers.

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  2. Thinking of you! It is so hard to learn we've passed this to our babies, but you are right...you found it early and that could make all the difference. Could you find a Naturopath nearby that is an LLMD and may go more of an herbal route with your baby? Maybe that would be easier on him at this age. Best of luck to you!

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  3. I have read that the PCR whole blood test and C6 peptide show actual "active Lyme" in the body. This may be a useful test to distinguish if baby has your Lyme antibodies or his own infection. Many prayers for your sweet baby and family!

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  4. Sending positive thoughts and prayers your way!

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  5. Praying for you and your little guy.

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  6. Hey there. So sorry to hear this. One day at a time. As I've said before, I passed Lyme to my daughter breastfeeding before I knew what was wrong with me and she's doing great now. I assume you are going to Dr. J's in New Haven? He didn't overload our Ana with antibiotics, mostly used zithromax. The abx took her a lot of the way, we got her 100% with rife. We are really strict with her diet as well. I marvel at her, what she has been through and now she is the strongest kid on the playground. Dr. J's has dealt with a lot of congenital babies. He is sweet and gentle and a total character. Come with questions! One thing he doesn't do is anything other than abx, so you might want to look into finding a good infant probiotic (I believe Rockwell nutrition carries them). You might want to consider delaying vaccinations until you know he is Lyme-free. Your boy is going to be fine, and we Lyme Momma's have tough skin for bumpy roads! Hugs!

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  7. Praying for you and your family. Hang in there.

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  8. I'm so sorry to hear about your little one. Hopefully there is a better explanation for his results. I do know of a pediatric LLMD who takes insurance and does use a combo of abx and herbs. It might be a few hours from you, but let me know if you want the name.

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  9. Hello Sara! Congrats on the birth! It's me, Hoos. I haven't been to your blog in a couple months, I think.

    I'm really sorry to hear about this. I would be interested to hear if the test was looking for immune response to Lyme (meaning antibodies, which as you probably know, the IgG can be transferred), or evidence of Lyme itself. And I think you alluded to wondering about that distinction.

    With the antibodies, it's the IgG that can be expected to show up in the baby's blood, because those antibodies can be transferred in utero. I am hoping that is the case.

    (Asking this in a curious way, not in any other tone!)....Were you on antibiotics every single day of the pregnancy? I can't recall. Did you take any breaks? And with Wyatt, did you end up taking any breaks from the abx during that pregnancy?

    If it is two "no's" or two "yes's", that would be interesting since there were different results. Even if you did take a break with Emmett but not Wyatt, it would be hard to say at all if that was a reason, since many things in life are so random, but I am moreso just curious.

    You would think that being on the antibiotics even for the last few months or weeks, would transfer the antibiotic to the baby and thus help, even if the baby was exposed (and "exposed to what" is the question, like exposed to living lyme or dead lyme).

    I have actually been still considering not being on antibiotics during pregnancy, or just doing it half the time, like the latter half. I am considering that perhaps the mother's immunity would be enough to provide protection from illness. I am thinking about talking to a high risk pregnancy specialist about all of it, like what role immunity plays in pregnancy.

    Best of luck and please keep us posted!

    -Hoosiers

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  10. I just remembered that you did take a break from the Zith with this last pregnacy, and now I am kicking myself because I can't edit my comment, and now in retrospect it seems really insensitive, because when I asked, I thought you did stick to them the whole time and I was just double-checking. I'm sorry. :( I was moreso thinking (that if it was indeed a non-antibody test) that this was showing that even perfect compliance with antibiotics can't give full certainty for a negative. So that is what I was going for. But now I just look stupid because you did take a short break. I definitely don't think that was the reason though. These things happen, and this was one of the possibilities we all face.

    I truly believe he will be just fine. If it turns out that it was indeed bb and not the antibodies that showed up in testing, I'd try to treat as soon as they let you! I wonder if before 3 months would make sense? Wonder if Dr. J would do that?

    I remember reading about a young baby that tested positive for babesia (baby had a high fever, mom had had babesia during pregnancy they think because she was a migrant farm worker in New Jersey), and they gave Clindamycin and Quinine (via IV, I think) right then and there, and the baby was fine after that, and then left the hospital. So what I took away from that, is that abx are sometimes given early, so who knows. Either way, whenever they are given, I think things will work out.

    -Hoos

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  11. Another question I would have is, how would the cord blood even test positive, if you were on the Zith at the time of the birth? (which I alluded to in my first post above) So the Zith should have been in the blood. I guess biofilms could be the explanation, that the bacteria was hiding behind that? But I always got the sense that blood was the one place that spirochetes really couldn't hide from antiboitics. So hmmmmmm.

    Would be interested to hear more about this test. I think PCR just looks for pieces of bb (genetic information), so while it is evidence of REAL bb (thus, it's a gold standard test) and not antibodies to it, it can be PCR positive just from DEAD bb. That is why some LLMD's give antibiotics before doing a PCR test of the urine, because the antibiotic kills the bb, then it is excreted through the urine. So my understanding is that in that case, the PCR picks up the genetic material from the *DEAD* bb. So let's hope that was the case with the cord blood! Even so, you may want to treat to be safe, but I'm thinking the dead bb creating a positive could be a likely scenario, considering you were on abx at the time. Thoughts, anyone?

    Best of luck! Thinking of you and Emmett!

    -Hoos

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  12. Putting all these pieces together, I am starting to think that if the test of the cord blood is PCR, you'd almost expect it to be positive sometimes, and that is okay, because the abx then protected the baby from live Lyme coming through!

    My question that I've always wondered has been, "how exactly do the antiboitics protect the baby? Because you aren't ever gonna kill all the Mom's Lyme. So is it just the baby's Lyme you are trying to kill?" But when you think about it, if it is JUST blood that the baby receives from you, and that's the only method of exposure to your germies, (can Lyme invade the placenta's cells, or does that matter for the baby?), then the abx should work, because abx are supposedly so effective in blood.

    Sorry so many posts!

    -Hoos

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  13. sara,

    i just discovered your blog last night. i don't blame you, but i didn't sleep a wink after reading the latest entry! i too, have disseminated lyme disease with co-infections. i too, am a new mom to a seemingly healthy 9 month old boy. I have not been adequately treated in the past, despite my severe initial presentation. my mostly neurological and rheumatological symptoms have waxed and waned since my initial diagnosis in 2007. i have not received any treatment since 2007, except a brief 28 day period in July 2009 for rocky mountain spotted fever...bugs, especially ticks and mosquitoes love me :/ mysteriously, my symptoms disappeared during my pregnancy and only 3 months ago started to re-appear. did pregnancy mask my symptoms? i don't know? i wished someone would have suggested or that I would have thought to have the cord blood tested.
    anyways, you're story has inspired me to finally seek out a specialist or lyme literate physician. i hope we didn't pass this burden onto our children. i will keep you in my thoughts and prayers.

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  14. My heart is saddened for you. I pray for quick answers and solutions. I was wondering if your reader Libby would share with me who the LLMD pediatrician is. I have three girls and was not on treatment during pregnancy. I would like to get them tested.
    my email is brandimc@live.com
    If you could share the doc's info, I really appreciate it. You can read my story at mommalyme.com

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  15. Thanks so much for sharing what you're going through. I have chronic LD and have recently restarted treatment because I hope to have children soon. All of these questions have plagued me, and I hate the lack of information available (and lack of definitive info) on the subject. I pray all goes well with Emmett and that you're able to get some answers and decide on treatment.

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  16. Had no idea you posted again until my Mom had asked me how you were doing since this post (she follows your blog too!) I told her I think she's just getting used to have two little ones now and getting started on treatment again, haven't seen her posting much on Facebook. Then of course she brought up Emmit and the positive Lyme test and I had no clue what she was talking about. I'm so sorry your going through this right now. I am anxious to hear what treatment your pediatrician and llmd can work out for him. I don't know how close you are to Southeastern PA, but my llmd which is well known in my area has treated her own son with Lyme and does treat young children and babies. I'm sure your overwhelmed right now and scared. I do hope you get some answers soon if it is the Lyme Antibodies or not. I'm sure the waiting is awful like the one person above said it sucks there is not more info out there us Mom's or Mom's to be with Lyme have access to. Emmitt and you will be in my prayers! -Ali

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  17. I'd love to hear what happened as a follow-up. I asked my LLMD about testing this baby's cord blood, and he recommended that we not do it because that more than likely it would pick up the mother's antibodies and not the baby's. Are they going to do a blood test as well to make sure that isn't the case? Hope everything else is going ok, that your health is improving, and that you are getting sleep.

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