Tested Positive for lyme, now what. (cross posted)

[frolick16]

I had a tick bite in the summer that looked a little suspicious, one of many that I have had through the course of my life as I am always outdoors and live in Pennsylvania. The birth center I go to has a midwife who is a lyme "expert" she told me to get tested I did and it came back equivocal by the one testing standard and positive by the other. The difference being two bands is equivocal, having the one band in particular means positive in the alternative diagnoses. I did not get the bulls eye rash (only present in 10% of cases), and I was not pregnant when bitten last. I never had been tested before so in my mind I could have had lyme for years. My dad has it, my nephew, my brother, my husband...some had symptoms, some did not. Anyhow, the treatment recommended by my midwife is antibiotics until the baby is born. The antibiotics would not treat me but alleviate the potential for trans-placental transmission. So Amoxicillin for 5 MONTHS!!! The literature out there seems so unsure if there is a risk and since I would have had it before pregnancy I wonder if that decreases the risk (if any) of transmission. Please, if anyone has any information or experience with this share your story.

[mediumcrunch]

If I were you I'd get to an infectious disease doc. Do some research on congenital lyme disease so you have some good information about what you are dealing with.

[katec67]

I would find a good naturopath. I had Lyme disease 2 summers ago and while antibiotics cleared the initial illness, it wasn't until my naturopath gave me the homeopathic Lyme remedy that all of my lingering symptoms cleared (including a persistent eye twitch). I had been very skeptical about homeopathy before that. I have never had another symptom since and I believe the homeopathic remedy cleared all traces of Lyme from my body.

I personally would try the path of least resistance while pregnant. 5 months of antibiotics sounds extreme if there are other options.

[monstermama]

see a Lyme Literate doc, for sure!

Frolick,

I was bit by a tick when I was 20 years old (am now 45) and didn't know that I had not fully treated the infectious disease. I have two kids that although they don't appear to be super sick, they do have congenital lyme. I hear about mamas who work with an ILADS (ilads.org) docs who treat with antibiotics throughout their pregnancy having GREAT results with healthy babies. You can't always recognize congenital lyme right away, so best to prevent it with the best that medicine offers.

Just so you know. . .through my 24 years of being sick on and off, I didn't touch anti-biotics, just homeopathy, herbs, etc. Not for myself or my kids, until our diagnosis a year ago. Now that I understand lyme a little bit better, I would definitely recommend you see a lyme literate practioner, NOT an ID doc. And antibiotics during pregnancy is often recommended, even by the lyme literate naturopaths.

lymenet.org has a whole lot of moms who have had babies while treating for their lyme (mostly chronic, a few with recent bites, like yours).

I had my kids on 6 months of abx, which I never in a million years thought I would do. . and they bounce back really easily. Hang in there. . let me know if you need other resources. I'm in Minnesota were, if you don't know someone with lyme, you must not get out much. : )

Blessing to you,

Jeanne
tillingmama.wordpress.com

[frolick16]

Thanks so much for your reply. I spoke with my midwife today who actually runs lyme clinics and am starting on 3000/mg of amoxicillin/day for the first month then 2000/day until delivery. At 36 weeks I will have an ultrasound to check baby for cardiac, neuro issues that may risk me out of the birth center. I am going to do a complementary pro-biotic therapy. I have been asymptomatic (except possibly eye twitch and knee joint issues) and was only dx a week ago (three months into my pregnancy). The suspicious tick bite would have been in September. Hopefully we are all right. I have never felt such anger towards something as I do ticks right now. I mean really, do we need them? And as spring/summer approaches I am definitely going to be aggressive in my "the tick stops here" campaign. Ugh!

[Dov'sMom]

I hate, hate, hate, hate, hate ticks. And as far as I know, neither I nor my kids have ever had Lyme. Our first summer out here I wasn't aware of hte issue, and didn't notice any ticks, but I can't believe we didn't have any because our second summer (this past one) I found 12 between me and my two toddlers. Considering that they always wore long sleeves and pants tucked in their shoes and I'm always totally covered, that's a lot! (My one tick was on my breast, and I have little doubt it got there from an adorable toddler's shirt when he came to nurse.) One of them was white and still tested as a deer tick -- did you know ticks could be albinos? It was only the sheerest chance that I even found it -- it looked like a scrape, some dead skin, or whatnot, but it occurred to me to wonder how he would have scraped himself under his diaper, so I pulled it off with my fingernails (not the best tick removal mechanism, but I didn't really think it was a tick) telling myself the whole time how disgusting it was to pull off your son's dead skin. Lo and behold, it started to crawl around on my hand!

Ugh. Ugh. Ugh. Ugh. Ugh.

There are very few things that get me as upset as ticks.

[Tizzy]

Okay this isn't pregnancy related so I'm sorry to take it OT but my DS2 had a tick when he was a few months old. I called the health line and the nurse reassured me that there was virtually no chance of him getting Lyme disease. It was in a spot that was easily irritated by his diaper and it did get a bit of a bullseye pattern.
He's 20 months old now and I haven't seen any CLEAR signs, and anything I've been able to find online is very vague.
Think it would be worth it to get him tested now anyway? When do you really start to worry??

[snoopy5386]

Originally Posted by Tizzy

Okay this isn't pregnancy related so I'm sorry to take it OT but my DS2 had a tick when he was a few months old. I called the health line and the nurse reassured me that there was virtually no chance of him getting Lyme disease. It was in a spot that was easily irritated by his diaper and it did get a bit of a bullseye pattern.
He's 20 months old now and I haven't seen any CLEAR signs, and anything I've been able to find online is very vague.
Think it would be worth it to get him tested now anyway? When do you really start to worry??

That is weird that she told you that, I would get a blood test to be sure - long term lymes is not something you want to mess with. My 3.5 yo caught lyme this summer - I found a deer tick under her arm, I know it had been there less than 24 hrs - she had just had a bath the night before. I have NO Idea where she picked it up either. We got the tick out, she never got a rash, but I took her into the doc just to be sure, I felt like the over paranoid mom. She went to the doctor one week and one day after we removed the tick and she tested positive. She had to be on antibiotics for 3 weeks but is fine now.

[frolick16]

I am telling everyone, if you have ANY risk factors, get tested. I did not have a rash, the tick was not super small, or attached for over 24 hours, etc. As far as I am concerned if you EVER had a tick on you, get tested. My kids are all getting tested. The rash is only present in 10% of people infected. A simple blood test, though painful for a toddler, is far better then the alternative if lyme is present. And beware, there is controversy out there that I feel, as I educate myself more, could lead to under treatment of this disease...see monstermama's links for some good info.

[Koalamom]

I wanted to chime in late because I just found this thread.
I was bit years ago and when I was pregnant I found out I have lyme even though I hadn't been bitten for years. I was 7 months along. I was in no way going to take abx for it since I am not convinced that that is the best for lyme and I feel it would do more harm to my babe in the womb. I did pass lyme to him as I had him tested right after birth. I researched and found alternative treatments that are safe for use during pregnancy and while breastfeeding. We have dealt with many health issues (me and my baby) but we are seeing light at the end of the tunnel. I am glad I chose not to use abx for lyme and still don' plan on it. My baby is 6 months old.

[engineer_mom]

I tested CDC positive for Lyme in my 5/6th month. And I don't remember a tick bite and haven't had any symptoms I can remember. After finally getting an appointment with a lyme literate ID, my mind was put at ease. He was very encouraging by the fact that I didn't have symptoms (yours sound mild). He said that some people react better to Lyme than others. And he said the risk of congenital lyme is very low. (I read online that a baby will test positive because of the mother's infection, not necessarily because the baby has lyme. but take that with a grain a salt, as most of the information out there is on the internet and not usually studied well. And I did just have my oldest tested, not because of symptoms but because he was bitten also.) This docotgr gave me a script for 3 weeks of amox (1800mg/day) to follow up my last three weeks of the same script from my regular doctor. He said he does treat some preg women more intensively (IV) but only if they need it. To me amox is a relatively harmless med and I'll gladly take it!
Hope everything goes well for you.

[monstermama]

Risk for congenital lyme, not low. .

I can't believe doc are still telling people that the risks of congenital lyme are low. That is true if you are on abx during pregnancy, but seriously. . I gave birth to babies with lyme. ALL of them. That isn't a low risk.

There are alternative herbal antibiotics, rather than western abx. We take cumanda, samento, banderol and quina (for babesia and bartonella, co-infections).

If your baby had a bullseye, call igenex and get a blood test. Better now than later. My kid was 12 when he got dx with congenital lyme.

If I had been given the option of 5 months of amoxicillian when I was pregnant, I would have gladly taken it. AND I would have eaten my body weight in good probiotics! : )

[frolick16]

I have opted to take the abx, after EVERYONE from the herbalist to the pediatrician to the acupuncturist told me to take them...so far, only one horrific yeast infection and a slower than normal return to homeostasis after GI bug. Amoxicillin seems a minimal risk to take versus potential health problems for babe.

[frolick16]

oh and is there any opinion either way about BFing? I know some literature says it is present in BM and other literature says not present no risk of transmission via BM, if it were transmissible that route would it also be sexually transmitted?

[MommyNicoleTX]

i have a friend that has become somewhat of an expert and advocate in lyme disease. she has it herself, in fact a very serious debilitation infection, and id recommend you read her story (and other stories out there) because it is a VERY serious disease that is not taken very seriously. she sees the best doctors in the field. she may be able to give you some great info woman to woman. here is her blog:http://updatesnewsandotherthrills.blogspot.com/

[MommyNicoleTX]

Originally Posted by frolick16

oh and is there any opinion either way about BFing? I know some literature says it is present in BM and other literature says not present no risk of transmission via BM, if it were transmissible that route would it also be sexually transmitted?

I'm an IBCLC and have found this link to be the most helpful because it consolidates all the info you can find online searching for hrs...

http://www.kellymom.com/health/illne...e-disease.html

Even in our "lactation forums" out there, there isn't much discussion on the subject. There is simply not enough research thus far to say "do not breastfeed-your baby can get sick (B. burgdorferi)." So my understanding is that the general consensus is breastfeeding outweighs the risks of possibly transferring lyme (B. burgdorferi), which seems minimal since we have not seen lyme passed on to breastfeeding infants or cultured in breastmilk.

Do note, though, that it has been seen to be passed on through the placenta, so perhaps taking the antibiotics is to prevent the placental transmission?

I do hope you contact my friend susan, mentioned in the other post. she can be very helpful in the subject.

Wishing you the best.