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.