Friday, September 30, 2011

Symptoms of Lyme Disease in Babies

Our visit with the pediatric Lyme specialist went well--much better than we'd expected.

"Your baby doesn't look at all like a Lyme baby."

Best thing I'd heard in ages, but of course, my immediate response was, "Well, what does a Lyme baby look like?"

Here are a few helpful things I learned during our appointment, including some signs to watch out for after your baby is born (Keep in mind that this is just another opinion among many--each doctor has a different take on the Lyme transmission subject. This particular doctor is considered the best for kids, and I genuinely liked him and what he had to say):

- This LLMD has seen about 400 newborns, half ended up having Lyme, half were fine. Most of the sick babies came from mothers who didn't know they had Lyme during pregnancy and hadn't been treated with antibiotics

-If a mother is on one antibiotic during pregnancy, she has a 50/50 shot of passing on the disease; If she's on two antibiotics throughout, Lyme transmission is pretty much unheard of

-There are other ways to test your baby in addition to cord blood testing. The placenta can be tested, foreskin on a boy, and urine samples

-Positive Lyme test results don't necessarily mean your baby is infected. IGeneX tests look for DNA fragments from the bacteria. That means that at some point during pregnancy, DNA from the bacteria was present in the blood that was shared with the baby. That doesn't mean it was an actual live infection. It could be mom's dead bacteria that was killed by antibiotics, or it may not have even been enough bacteria to make an impact. The test simply shows that something was there. This brings up the question of whether it's worth it to get anything tested at all, since it's impossible to tell what a positive result means.

If I had the opportunity to do it all again, I would still have the boys' cord blood tested, and I'd add in the placenta test (not really interested in urine or foreskin testing). Much of it has to do with the fact that I sleep better at night knowing what we are facing, but now I also know how assertive I have to be with laying the groundwork for treatment based on the initial results. Wyatt's test came back negative, and though I will have him tested once he is a little older, I don't have the sense of urgency that I do with Emmett, who had a positive test. We have actual documentation on file with all doctors, Lyme literate or not, so in case his health declines, or we face other Lyme related problems later, we can trace it back to the beginning. Doctors cover their asses; we're covering ours--I refuse to deal with anyone telling me I'm crazy or paranoid if my kid has strange symptoms five years down the road. I journeyed through that section of hell while trying to get my own diagnosis, and I won't put that on my son.

-If the cord blood or other tests are positive, a Western Blot should be done on the baby to confirm. It's hard to get blood from a newborn (their veins are pretty much nonexistent), and it's even harder to watch your baby in pain. I just kept reminding myself that Emmett wouldn't remember anything from that day, and it was going to help him in the long run

-90% of Lyme babies that come into this doctor's office are what he calls "floppy babies." That have very poor muscle tone and they have no head control. That's the number one sign of Lyme Disease in a baby

-Lyme babies will also have painful joints. How do you tell if a baby has painful joints? When you touch/press the knee, ankle, wrist, etc, the baby will cry out and retract in pain. At the very least he or she will flinch and whimper

Here are a few other symptoms to look out for:

+ Sleep disturbances
+ GI problems / severe colic
+ Poor feeding / failure to thrive
+ Projectile vomiting
+ Weight loss
+ High irritability
+ Sensitivity to light and sound
+ Not wanting to be held
+ Frequent infections (Serious infections. Blocked tear ducts and such don't count)

Some of these things come with the territory when you have a baby, for instance, they wake up a lot. Most parents have an irritable baby at some point, who has a meltdown after a long day of being overstimulated. I think the doctor is talking about severe instances that never let up.

When I expressed concern that Emmett has terrible reflux, hates everything, never sleeps, and can cry like someone's torturing him for six hours at a time, he said that reflux and digestive problems are signs of Lyme, but a doctor can't make a diagnosis based on this alone, as many otherwise healthy babies suffer from painful reflux. Same thing goes for irritability. The idea is to rule out some symptoms--if the irritability and crying subside after reflux treatment starts, you know what the problem was. If the baby is still experiencing may of these symptoms after reflux treatment, he or she should be evaluated again. In Emmett's case, the other symptoms improved by 75% within two weeks of reflux treatment. More serious symptoms like poor strength, growth, and muscle tone/head control should send up a red flag right away.

I'm not going to lie--I'm still scared, and I wonder if I passed this on to my little one. I do feel much better knowing that treatment for him would not be long or intense, and that he can go on to live the normal life of a healthy kid. Blood test results won't be in for another week, and I'll let you all know as soon as I hear something.

As we went to leave, Emmett's doctor smiled at me and said, "Don't you give up either, dear. You're much more fixable than you think!" It's too bad this guy only works with children--I'd be happy to let him take a crack at treating me. I still have hope that in a few years all of this will be a distant memory, and I can tell my kids, "We had a rough stretch when you were babies, but we're all fine and well now."


  1. Thank you for posting this. I have two children, age 4 and age 15 months. The 4-year old is treating now. It is very interesting, this doc's take on things. Thank you very much! I hope and pray your little one is spared and that you and your other child heal quickly and completely.

    1. Do you mind me asking... what your 15 month Olds symptoms were? Was he sick from the start? My 16 month old is starting to show symptoms!

  2. Hi Melissa, If you have a moment, will you tell us a little bit about how your child is doing in treatment, and how you got a diagnosis? Is your doctor's approach to all of this much different than our doctor's? Just wondering if there's any method to this madness, or if all of these doctors just pick a treatment protocol that sounds good and stick to it. :) Seriously, though--it would be great to read some comments and updates from people who have gone through this before. Please feel free to share any info in the comments section here,

  3. Glad to hear your appointment went well. Dr. J told me that I "am fixable" too, and it was one of the most reassuring things I heard at that point. At times I never thought we'd see the light and I do now, although it's tough to think we will always have to be thinking/dealing with this disease whether we are keeping it in check or looking for signs of relapse. My son is due in eight weeks. He feels strong and I am keeping my fingers crossed that he will be Lyme-free.

  4. Thank you for posting symptoms. I have three children and so far my middle child (almost 3) had several bands come back with two stars or Ind. on the IGeneX testing. I am bringing her to a LLD tomorrow to go over the results and possibly start treating. I was pregnant with all three without knowing I had Lyme and I also nursed them all. My baby is 9 months and he only had 2 Ind. bands show up on the IGeneX. I am going to keep looking for symptoms but his doctor doesn't see any reason to treat him right now.

    What are your thoughts on breastfeeding? We are going to try for at least one more baby but I'm not sure about breastfeeding in the future due to possibly transmitting it via the breast milk. What was recommended to you?

    1. Breastfeeding is *always* better than formula. You made the right decision to nurse your baby. I believe that even with the bacteria there, the immune boost the baby gets far outweighs the risks of getting Lyme.

      Have you read the study in Africa with HIV+ mothers and breastfeeding? They assumed the babies who were breastfed would be more likely to test HIV+ at birth and several years later. The opposite was true. Breastfeeding so stimulated the babies' immune systems, and formula so destroyed the immune system, that the breastfed babies were *much* less likely to test HIV+, and the formula-fed babies were much more likely to test positive. It was the same several years later when they were toddlers. That immune protection lasted even after weaning.

      I like to think that Lyme babies are stronger if they are nursed. Less likely to inherit it. Or if they do, it's milder.

      All four of my babies likely inherited Lyme, seeing as my husband and I both have it. We're successfully treating ourselves with the Cowden protocol and I just started the children on it as well. I believe they're doing as well as they are because they were breastfed completely and because we're careful with our diets now.

      I know this is an old post and the original poster won't likely see it, but others will read this and hopefully be encouraged that nursing your baby is always the best thing to do.

  5. Hi Sara. Thanks for doing all the detective work for us :-)
    Your blog is really a lifeline for us Lyme moms who hope to have healthy babies while fighting off Lyme & co ourselves. I heard there were two specific abx Dr J recommends for pregnancy. Did he mention the specifics to you?

    I also breastfed my daughter for 1 year before i knew about the Lyme. We get the results of her igenex testing
    tomorrow. Crossing my fingers...

    1. Libby how did the results turn out? I am nursing my daughter currently.

  6. Wanted to know where the information came from regarding the one vs. two antibiotics and the chances of mother transmitting lyme to the baby??
    I am on one antibiotic presently(ceftin 500 mg 1 per day). My LLMD never mentioned anything about two antibiotics. Now I'm concerned.

  7. Hi Sara,
    I thought I have read every Lyme blog out there... and then today in a desperate internet-land search, I found yours. I am truly glad I did. I had Lyme for about 2 years, got diagnosed (finally), and have been treated for the last 9 months. I found out last night I am pregnant. As typical with my life, this is highly unplanned and I'm not sure I have quite wrapped my head around it yet. Coincidentally, today was also going to be my last day on both oral (alinia/factive alternating) and IV abx (Vanco 1.5GM BID). My LLMD said that I will be "fine" during pregnancy, but will be monitored, but didn't prescribe anything to me. Will you please tell me which two oral antibiotics your LLMD suggests? My OB is willing to prescribe, but isn't familiar enough with the disease (then again, who is?). I am only 4 1/2 weeks along, and in a panic state as I wouldn't dream of putting my worst enemy through Lyme (babesia, bartonella), much less my own child.... thank you...

  8. Who is Dr j can u email details I am worried my son has Lyme

  9. The simplest way to evade being disliked is to mind your own business and keep from giving good advice.
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  10. Hello there,
    First, thank you for this information. It is encouraging to see that so many people are raising healthy families after being diagnosed with Lyme (but it does seem that keeping track of the disease can be a lifelong battle). I was just diagnosed with Lyme disease and I have no idea how long I have had it--fatigue has always been a problem for me so pinpointing the time of contraction is difficult, especially when we have never found a tick bite or bullseye rash. I am now on antibiotics, but I am wondering if anyone knew how long after treatment it would be safe to try to conceive--my husband and I had just started trying when this diagnosis came on. I actually thought my symptoms were a sign of early pregnancy and only had a blood test because of a strange rash I developed over my whole body. Thank goodness my mother-in-law pushed me to a doctor. I am really confused about what this diagnosis could mean for me and I am scared....

  11. Sound therapy is popularizing these days because it is a very efficient and 100% natural therapy which has no side effects. Sound therapy can heal Lyme disease. There is no doubt the power of Sound Healing and positive thinking is astonishing.

  12. Everyone is talking about lyme, who's willing to admit they had morgellons too?

  13. Also notice the few commenters who said their husband had it. IT's obviously sexually transmitted.

  14. Hi,

    I just received a lyme diagnosis and my baby is almost 2. We didn't know I had lyme when I was pregnant or breastfeeding and as a newborn our child ended up having strange "limp" spells and what appeared to be spells where she stopped breathing. We were in hospital for a week and they couldn't figure out what she had, so they diagnosed with severe reflux. Their best guess was that the reflux was causing a strange 'nerve' reaction and caused her to go limp. She also had strange rashes on and off for the first year of life and severe allergies. I am now wondering if she has lyme.

    Does anyone know if the limpness and palor in lyme babies is constant or if they can just have limp spells? Can babies seem quite healthy and meet milestones but still have lyme?

    1. Helllo! I know this is a late response but, I am going through the same thing! I was diagnosed with MS and just found out this week that I actually have LYME. I only tested myself because my 5 year old has been having strange things happen to him such as having a limp for a couple of days for no apparent reason.How are things going with you two?

  15. hello, I am really sorry to bother you but I did some tests about Lyme disease that were positive a few months ago and am currently treated for that with essential oils for 2-3 months. I found out I am pregnant; could you tell me if I can continue my treatment until he gets back or should I stop? I'm taking: 5 drops banderol 3 times a day (2 times internally and 1 time externally) 5 drops samento 3 times a day (2 times internally and 1 time externally) 10 drops pinella 3 times a day (2 times internally and 1 time externally) 5 drops tic tox (1) 3 times a day (2 times internally and 1 time externally) Or should I take all of them externally? Plus do you know if any of these products should not be taken in case someone is trying to conceive (a friend of mine).? thanks a lot for your help and sorry again for bothering you. Best regards, Marie Kuentzler

  16. Hi Sara, I just found your blog as I'm searching for information about Lyme babies. I was diagnosed in 2008 but for sure was bit when I was pregnant with my son in 2006. I may have had it during other pregnancies. Our entire family of 6 has been dealing with chronic Lyme for at least 6 years now. I recently started a blog about our journey too. Thanks for this information, I hope you don't mind if I link your blog on my Links & Resources Page. You have put together some very helpful information.

  17. Hi Sara, I just found your blog as I'm searching for information about Lyme babies. I was diagnosed in 2008 but for sure was bit when I was pregnant with my son in 2006. I may have had it during other pregnancies. Our entire family of 6 has been dealing with chronic Lyme for at least 6 years now. I recently started a blog about our journey too. Thanks for this information, I hope you don't mind if I link your blog on my Links & Resources Page. You have put together some very helpful information.

  18. This comment has been removed by a blog administrator.

  19. Hi Sara, I was just searching the internet for symptoms of lyme disease in newborn babies. I have 5 children, two of them for certain have chronic Lyme as I do. My newborn is 1 month old and I found out about my Lyme disease the day after I found out I was pregnant with her. I started becoming concerned because she still does not have much head control even though I was on amoxicillin and zithromax for most of the time. My 5 year old son suffers greatly from it and we recently found out my 3 year old daughter has a malfunction in her heart and we have to see the pediatric cardiologist on Christmas Eve. I can't tell you what a joy it was to sm find your blog post and other peoples comments. I feel like I'm trapped in a world where no one understands what it's really like, especially when dealing with your children who have it. My husband is wonderful about it all and has researched hundreds of hours regarding the disease.. And we live in Minnesota and we cannot find a doctor who can help us. I just wanted to thank you for posting your experience, and hope your family is doing well. God bless you.

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