Monday, September 27, 2010

Test Results Are In




I tend to write in retrospect, because often times I have to work through difficult times before I can share experiences publicly. This is solely for the purpose of not sounding whiny to readers. Some weeks are just shitty, plain and simple. In time, solutions present themselves, and I like to be able to report positive outcomes if at all possible.

That in mind, I’m happy to report that Wyatt’s cord blood test results came back negative! Not a single trace of Lyme!

Yes, I’m sharing this 9 whole weeks after his birth. A failure in communication delayed the results--(it’ SO important to keep on top of all your doctors). I was told that no news was good news, so we went along thinking all was fine with the test results. Then I learned at my 7 weeks OBGYN checkup that the results never came in.

That sent me into a brief panic (OMG, what if he actually has Lyme and two months have already gone by!). After a lot of back and forth with IGeneX and the doctors, we got it all cleared up.

Three things to know:

Your OBGYN will have to sign a release form that IGeneX faxes over after they receive the blood sample to ensure that the test results are going to a “secure location,” whatever that means. Make sure the OBGYN office knows that this isn’t a junk fax (that’s where we ran into problems, as we think the forms were accidentally thrown away).

Once IGeneX receives the blood samples, it takes only 7-10 days to get results. If you haven’t heard anything by then, follow up. They’re super nice and helpful when you call.

3. If your LLMD agrees to look them over, have your baby’s results faxed to him or her as well. In the end, it was my LLMD who delivered the results, because I felt he was the only one qualified to read them properly. Note: I don’t know how the results are presented, as I haven’t seen them on paper. They could just be a simple positive or negative, in which case, your OBGYN could also share the results. I just remember looking over my initial Lyme test results two years ago and asking my LLMD to explain them because I has no idea what any of it meant. I just assume cord blood is presented the same way?

Above all, I just want you to know how helpful this cord blood test was for piece of mind. Of course, all Lyme tests can be unreliable, but an initial 100% negative reading took a huge weight off of our shoulders. TOTALLY worth it to have the cord blood sent in. If in twenty or so years we find that the whole congenital Lyme transmission thing is actually bogus like many doctors say, in the end we lost out on $250 bucks. I’d pay that once a month to be able to sleep soundly at night.

Speaking of sleeping soundly, holy crap--rest up mamas! Babies don’t care if you’re symptomatic or exhausted. I fantasize about the days when my biggest complaint was getting up a lot to pee! Good thing the frustration fades when they smile that gummy smile at you.

11 comments:

  1. How about co-infections? Can you test for those?

    ReplyDelete
  2. I emailed you a while back and you were super helpful and I never said thanks. Thank you, honestly. You have given me more peace about Lyme and my soon to be born baby than anything/anyone else has been able to.

    I am so happy your baby came back free & clear of Lyme. That is wonderful news, a true cause for celebration. Cheers!

    ReplyDelete
  3. This is really wonderful news, and I'm so glad you had this done. What a great milestone and moment of being able to sit back and just relax alittle. So glad for all 3 of you :)

    Also, I really hear in your "voice" -- um, cyber voice? -- how tired you are and I just want to say you are on my mind, and I'm wishing you the best as you navigate that. But, on the happy front, just so glad for you with little Wyatt. Your love language together rings through :)

    ReplyDelete
  4. Horray!! That's terrific news! I'm so happy for you. Praying that that you would find some rest in the coming days. Hold tight to those good days....and gummy little smiles.

    ReplyDelete
  5. Sorry for the delayed response, but thank you all so much for your support! We really appreciate it! Julie, you can test for co-infections as well. They're listed on the IGeneX form that comes along with the package you'll request. I can't remember off the top of my head which ones are available, but I do know for sure that Bartonella is definitely on there. I'm sure there are more.

    ReplyDelete
  6. If the cord blood results come back positive, is treatment recommended? Or do you wait until the baby shows symptoms?

    ReplyDelete
  7. When I discussed it with my doctor, I believe he said it would be a short course of treatment for the baby right away to be safe. Nothing long and serious like aggressive adult treatment. If the cord blood turned out to be positive, I would assume that baby would be in contact with it, too? It was also recommended that we test our son's blood at 6 months old, regardless of whether it came back positive or negative, and look for symptoms to show in the meantime. It would be a good question to ask your doctor, because I've noticed opinions vary so much. Personally, if the cord blood tested positive, I would treat my baby--I'd feel safer giving him meds for a couple of weeks than to wait and see what happened.

    ReplyDelete
  8. Thank you. The cord blood did come back positive - of the 4 PCR tests done on the IGenex panel one was positive, other 3 negative.
    I plan to ask the pediatrician (who is not a Lyme specialist) for 28 days of amoxicillin (which is what is recommended by Burrascano's guidelines for an embedded tick bite).
    With PCR there is no way to tell if the Lyme detected is live or dead. I was on abx during my pregnancy, so it's possible that the DNA was that of dead Lyme, but no way to be sure. I'd rather treat and I hope the pediatrician will be amenable. Baby is 2 months old now (I also had a hold up getting the results) and has shown no symptoms. My LLMD recommended testing baby again at 3-4 months. Six months also sounds reasonable.
    thanks for your reply!!

    ReplyDelete
  9. Oh no! You must be so nervous right now... I know strange things can happen, but that would be one hell of a Lyme bug to survive the abx. And not all bands were positive? I'd like to remain hopeful and think that the test picked up on some little dead guys. From what I've read and heard, full on congenital Lyme transmission usually appears immediately and comes with a bunch of health issues and some deformities or developmental problems. You're in good shape because you know what you're looking for...keep up with the testing definitely, but it's a great sign that there are no symptoms so far! If you have time, would you mind keeping in touch and letting me know how further testing goes? I'm also interested in how to obtain abx for a Lyme exposed infant. I'm guessing because of the controversy they don't give that stuff out easily. Maybe your LLMD could recommend someone if your pediatrician isn't "Lyme friendly"? Good luck and congrats on the little one! :)

    ReplyDelete
  10. Thanks again for your reply - I will certainly keep you updated. Unfortunately, my LLMD is in a different state than where I live - no LLMD's near me. So, we'll see what the Ped. says. I've had many years to practice convincing doctors, hopefully this will be easy and she won't pitch a fit. Yes, I worry, but I *was* on abx and baby is very healthy....so that's a good sign.

    With my first child I was not on abx (nor did we test cord blood) b/c I was sick, but not diagnosed. He is now 10 yrs old and very healthy. So this one has an even better chance I guess b/c I was being treated....

    ReplyDelete