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Positive cord blood in newborn (IGeneX)

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Posted 9/19/2016 8:56 PM (GMT 0)
My newborn son tested positive for his cord blood test with IGeneX (placenta was negative). He is now 6 weeks old. My non-pediatric LLMD wants to start him on antibiotics (zithro). But I am hesitant to jump right in. I have heard that a positive cord blood PCR can just be showing DNA from my old Lyme infection. I was on antibiotics for most of the pregnancy and for three years before it (for my pregnancy/breastfeeding of my daughter). I went off a few months before my son arrived to give his gut flora and mine a chance to recover. I wasn't really actively ill even, just taking it as a precaution. But now I am confused and scared.

Does anyone have experience with treating congenital lyme in their newborn? I left a message for Dr. Charles Ray Jones in CT to see if I can get a consult with him as he is supposed to be the best with kids. My doctor doesn't seem to have the latest info on treating pediatric lyme.

ANY experience or advice would be very very appreciated!
Posted 9/19/2016 9:02 PM (GMT 0)
Hi Dogears,
Welcome to our community! I'm so glad you found us, but I'm so very sorry to hear about this.

If you haven't yet, please do read through our "new to Lyme? Start here!" even though you are not new to Lyme - it's packed full of important information that could be of great help.

With a positive test, I wouldn't risk it. I grew up with these infections (infected at the age of 7) and I can tell you that it was not an easy life experience. Lyme sucked the life out of my life. I would want to give my child every opportunity to not have to live with these infections in a chronic state.

And treatment now may not be what you want for your precious son, but it sure beats what we know can happen once the infection(s) go chronic, and treatments would last a lot less than trying to treat him later, once he develops issues.

I'm sure there will be other along over the course of a few days (we get pretty slow in the afternoons and weekends right now) that have had their child/children infected and will be happy to help.
Posted 9/19/2016 9:07 PM (GMT 0)
Hi Dodgers - I'd also like to welcome you here.

Good idea to consult with Dr. Jones.


I didn't know PCR's can have false positives. They are based on finding DNA of the bacteria.
Posted 9/19/2016 9:07 PM (GMT 0)
awe....poor thing.....there got it be something we can do beside have him on abx so young??? :-((
There got to be a dr that treats pediatric lyme....anyone????
Posted 9/19/2016 9:09 PM (GMT 0)
Yes, Artermix there are Pediatric LLMD's.

The one Dogears mentioned - Dr. Jones - treats children only.
Posted 9/19/2016 9:11 PM (GMT 0)
Dogears,

Welcome to the community.

I am so sorry that you are going through this with your six week old. I don't have advice for you but it sounds like you are doing the right thing. I might appeal to the LLMD in CT and say it is a bit of an emergency since he is so young and you need expert advice. Babies/children are very resilient. My son was in the hospital at four months for a kidney issue and then got into rat poison at 10 months (it was left under a dishwasher by a previous tenant) and he had to be rushed in and have charcoal pumped into him for 48 hours. It's scary as a mom. You will get through this and the experts (I'm not one of them) on this board are amazing. Good luck to you both. Please keep us posted.
Posted 9/19/2016 9:11 PM (GMT 0)
Just wanted to say, welcome and I'm so sorry that you are going through this with your little one. I really do hope that you will be able to get an appointment with Dr. Jones.
Posted 9/19/2016 9:20 PM (GMT 0)
I do have some listings of other Lyme literate Pediatricians. If you would like me to send them to you, just send me an email with where you are located, and ask for Pediatric LLMD's and I'll send you the names and contact information of any that are even semi close to you.
Posted 9/19/2016 9:36 PM (GMT 0)
Thank you everyone for the super quick replies!!

I have/had what is suspected to be congenital Lyme (wasn't diagnosed until I was in college though). So the LAST thing I want is for my son to have it. I am so scared of killing his gut flora at such a young age, as poor flora is associated with autism. But so is Lyme. So it's like I can't win. My LLMD suggested doing zithro for 6 wks and then really really building his flora back up during and after treatment (he is already on probiotics). I just want to make sure that:
a. We really do need to put him on antibiotics. Should I do the test at Advanced Laboratory Services in PA that is supposed to be the most "conclusive" Lyme test out there (http://www.advanced-lab.com/spirochete.php)?
b. If we do put him on antibiotics, are we using the right ones, the right timeframe, and the right method (pulsing vs. not pulsing, use of 1 vs 2 antibiotics, etc.)?

I'm REALLY curious if there are other parents here who have seen Dr. Jones. I live on the other coast, so I am hoping he does phone or Skype consults. I know he has patients from all over the world.

I'm also really curious if anyone has used Advanced Laboratories. They are new to me, but Dr. Jones mentions them in an interview online and so now I am intrigued.

The good thing is that baby is not acting like a "lyme baby". He's strong and has good muscle control. He is a preemie though. But he had a 9 Apgar score which is great.

As far as whether this can even be a false positive, I don't know. I read that online as well from another mom who's baby tested positive with IGeneX as mine did and who went to see Dr. Jones.

I'm just so so so frustrated and feel so guilty. I feel like I really screwed up during my pregnancy. And after years of treating myself for Lyme and coinfections the last thing I thought I would have to do is treat it in my kids. I am truly surprised this came back positive. It was negative for my daughter.

Thank you again, everyone, so your support and advice!!
Posted 9/19/2016 9:46 PM (GMT 0)
I have not heard that the Advanced Laboratories is the most conclusive Lyme testing facility.

Please don't blame yourself. You are doing everything you can now for your baby.

With a new infection (I'm considering 6 weeks relatively 'new') - often only one antibiotic is used. Treatment isn't generally as 'complicated'.
And..pulsing usually isn't used with an acute infection...
If you can get to a Pediatric LLMD that would be best.
Posted 9/19/2016 10:11 PM (GMT 0)
@Traveler - thank you!! I have sent you an email.
Posted 9/19/2016 10:18 PM (GMT 0)
Thank you @Girlie! Trying not to blame myself, but it's hard. Lyme is so complicated, and pregnancy just ads to it. But yes, we are doing all we can now.

Good to know about the pulsing. My LLMD suggested this for baby, which is why I became concerned about going with his advice, as Dr. Jones does not recommend pulsing for kids.

As for Advanced Laboratories - apparently they culture the Lyme bacteria. Dr. Jones mentions it in this interview and also refers to a boy who tested negative at IGeneX but positive at Advanced Labs. But the Advanced Labs test takes a lot of blood apparently, so it's less than ideal for newborns probably. http://lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/straight-talk-with-pediatrician-dr-charles-ray-jones I thought that was interesting.

Hoping we can consult with Dr. Jones soon!!
Posted 9/19/2016 10:25 PM (GMT 0)
Sending good thoughts to you and your baby... I have nothing to add other than you might want to research options with an herbal protocol. So, so, so sorry - for everything you are dealing with. Hang in there!
Posted 9/19/2016 10:51 PM (GMT 0)
Thank you @Questing! My LLMD mentioned herbs but also said that antibiotics are the more "proven" route. I'm torn. I don't even know if anyone has treated a newborn with herbs and alternative therapies and how the dosing for that would work or if certain herbs that are safe in adults are safe in babies. Thank you for the suggestion. I am still definitely going to look into that just in case it would be the better option. Or even something to do in addition to antibiotics.
Posted 9/19/2016 10:58 PM (GMT 0)
Personally, since it is an early infection, I would go the antibiotic route...unless a Pediatric LLMD said otherwise.

Unless I'm wrong - and a 6 week old baby having congenital lyme isn't consider 'early' infection.
Posted 9/19/2016 11:18 PM (GMT 0)
It's also going to be imperative to get really good robust flora into your baby. I would ask the doctor about colostrum as well. It's the good nutrition that your baby would get if you were breastfeeding.
Posted 9/19/2016 11:35 PM (GMT 0)

Girlie said...
Personally, since it is an early infection, I would go the antibiotic route...unless a Pediatric LLMD said otherwise.

Unless I'm wrong - and a 6 week old baby having congenital lyme isn't consider 'early' infection.

Technically, couldn't the baby have had lyme the entire time (9 months)? That wouldn't be new.

I hope Dr. Jones get back with you. I think I may have their email if you need it (I had made an appt for my son but didn't end up keeping it). I'm guessing they will want you to do some courses of antibiotics as a precaution but it will be interesting to get their viewpoint on treating an asymptomatic newborn. Please let us know how you make out.
Posted 9/19/2016 11:46 PM (GMT 0)
That's what I'm wondering K07 - is it new? as in 6 weeks...or does the time in the womb count?

If there's no symptoms...then it's probably considered 'new'.
But, it must be difficult to tell if a newborn baby has symptoms.
Posted 9/20/2016 7:36 AM (GMT 0)
Dna connexion is a urine test its the hot new mess and can fast trax it for extra $..dont even need a doctor ....i would amoxi ...and consider rife ...ask rowing mom here and brussels on lymenet . I need to test my 3 yo but she has been developing ok but has a bad spider bite ...
Posted 9/20/2016 9:14 AM (GMT 0)
I'm so sorry to hear that your newborn son has to go through this: and you aswell - it cannot be easy. I wish you and your son the best! Good luck to you.
Posted 9/20/2016 11:28 AM (GMT 0)
I am so sorry to hear about your problems.

I just have another thought - before putting your baby on antibiotics, maybe to try with dark field microscope - if there are any spirochetes visible? I just did that test for my 7 year old daughter and are waiting for results. In my test the spirochetes were well visible. There should be some labs in USA which do that.
Posted 9/20/2016 3:01 PM (GMT 0)
The problem with dark field microscopy for diagnosis, is that there has to be plenty of spirochetes in the bloodstream at the time of the blood draw, otherwise the small drop in which is tested, there may not be any visible spirochetes. It can be helpful for many though.
Posted 9/20/2016 3:44 PM (GMT 0)
k07 - I'd love their email if you have it. I am not sure if I even called the right number. Their website looks a bit dated. Thank you! Should I private message you somehow?
Posted 9/20/2016 3:54 PM (GMT 0)
Thank you for all the well wishes and support, everyone!

I do not know if this is considered a "new" infection. Or if it's even an active live infection at all (if it is just DNA from my Lyme). And I am having a very hard time finding info on this. I may call IGeneX and ask them. And then hopefully a Pedi LLMD can help too.
Posted 9/20/2016 4:40 PM (GMT 0)
Good luck, dogears!


please keep us posted...and let us know how it goes.
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