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» LymeNet Flash » Questions and Discussion » Medical Questions » Breastfeeding with Chronic lyme - torn!!!! please help!

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Author Topic: Breastfeeding with Chronic lyme - torn!!!! please help!
sdmiller
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Ive had lyme for 6 years, I've been treated and was doing pretty good. For the most part treated, had some lingering arthritis when I got pregnant last year.

Felt awesome during pregnancy, my llmd treated me with antibiotics 2nd and 3rd trimester and said I could breastfeed as long as I stayed on treatment.

Baby was born healthy, Igenex cord blood and placenta were negative too which was awesome. Well I am having now 3 months since birth and having the dreaded post pardem return of some old symptoms. Dont know if it is from the trauma of childbirth or what.

but it made me think about should I be breastfeeding? I was shocked to find out that a lot of poeple say to NOT breastfeed at all when youhave had chronic lymes..

Im so scared about this.. what should I do? Should I wean immediately? I thought I was doing everything possible to have the healthiest child I could have and now I feel like I might have been poisoning her these last 3 months with my breastmilk.

It makes me so sad to stop breastfeeding her but I will do whatever is best for my baby. Are there any moms out there who have done what I've done? Meaning have had chronic lyme treated and been on antibiotics through pregnancy and breastfeeding? Are your little ones doing ok or are they sick?

Thanks for any advice-
Desperate first time mommy in San Diego

** edited so it's easier for everyone to read **

[ 04-24-2015, 08:14 PM: Message edited by: Lymetoo ]

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Sammi
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sdmiller, congratulations on your baby girl!

You are a good mom to ask important questions. From what I understand, Lyme can be passed through both pregnancy and breastfeeding. You may want to read the pregnancy/breastfeeding information in Dr. B's treatment guidelines on page 21 at http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf He advises against breastfeeding.

I think it is common for moms with Lyme to crash after childbirth. Some moms feel better during pregnancy and much worse after the birth. Make sure your doctor knows you are flaring.

Do you have help at home?

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sdmiller
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Thank you, Yes I do. I'm doing fairly well still just am starting to feel little inklings of old symptoms. But is there anybody out there that treated chronic lyme while pregnat and did go ahead and breastfeed? I'm very curious how it went and the outcome. . as this is what I have doing.
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surprise
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All I am going to say is that it absolutely CAN be spread thru breastfeeding.

One of my 3 children was born with congenital Lyme disease. She was breastfed. It was before we knew of Lyme/ before I was treated for Lyme.

I would do everything I could not to give an infant Lyme disease. And be careful vaccinating.

Last thing:
Congratulations! Love and enjoy! Warm wishes your way :-)

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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sdmiller
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Thanks for your input.. anyone else?
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Tincup
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First- Congratulations! What a joy a baby is!

My thought is most have heeded the warnings from the experts and did not breast feed.

Here are some comments from LLMDs.

https://sites.google.com/site/drjoneskids/pregnancy-and-lyme/breast-feeding-safe

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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TF
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Look at the notes I took on pregnancy and breastfeeding with lyme disease. These are from the famous pediatric lyme doc, Dr. Jones.

The notes are here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/112243?#000000


See where he said "The mother can only breast feed the child if she is on antibiotics. Then, yes, it is fine to breastfeed."

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Lymetoo
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OK... disclaimer here... I've never had children...

But... if she were going to pass Lyme along to the child wouldn't it have already happened? .. so she may as well continue breastfeeding?? There are so many important benefits to breastfeeding.


If I am totally WRONG, I will remove this.

--------------------
--Lymetutu--
Opinions, not medical advice!

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sdmiller
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It's all so confusing. It seems like dr. J said to not breastfeed a long time ago, and now saying it's ok as long as mom is on antibiotics?? I take that as good news as that is my situation but it's all so conflicting...ugh

Anybody deal with exact same situation? WHT did you do and how did it turn out?

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MannaMe
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My husband is the one with Lyme in our house....

So, I haven't been in your situation.

I have had children and breastfed them. I would say if you are on ABX breastfeeding would be best for your baby. There are so many benefits that you will pass on to your child.

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randibear
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aren't the abx passed on to the baby? never had kids but whoa...hard decision.

i know we can't donate blood.

--------------------
do not look back when the only course is forward

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Tincup
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TuTu said... ``if she were going to pass Lyme along to the child wouldn't it have already happened? .. so she may as well continue breastfeeding?? There are so many important benefits to breastfeeding.``

Say, TuTu, we are at a gun range and are shooting at a target. Lets say we each try to shoot one time and we both miss- (I wouldn't miss, but will pretend to for the sake of this story- smile).

So we shoot again and miss, and again and miss, and on and on. FINALLY you hit the target!!!! Given enough tries I knew you would.

Same with the breast feeding situation. If the infection hasn't already been passed along in the breast milk- do we want to encourage someone to continue trying till it does happen?

If it has been passed, is it ok to continue passing more and more spirochetes with each feeding? The more the merrier is NOT the case here.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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TuTu said... and TuTu it is not that I am picking on you, just that you asked really good questions that are making me think hard and deep, and I am responding to Randibear`s good point too.

TuTu said... ``There are so many important benefits to breastfeeding.``

Well, water is very good for us. We need it to live. If we drink water that has a little snake venom and arsenic in it- is it ok? Or some mercury and aluminum in the water? Is that ok?

But, we say, the water is GOOD for us and has so many benefits!

See where I am going with this? If a baby drinks tainted milk, is that really good for the baby? Remembering too there are alternative choices that have been fine to use for several generations so far, whereas in the case of water there really aren't a lot of choices.

If we insist on breastfeeding while we have LOTS of antimicrobials in our system, and offer a double whammy with a chance of still passing Lyme (cyst, L-forms, biofilms, etc), is that still considered to be good for the baby?

I can't help remembering the young high school girl who said here one day... when this type of topic came up years ago... that given a choice, she would rather not have suffered the horrible pain and problems associated with Lyme her entire life, but she didn't have a choice. She got Lyme at birth or shortly after birth from her mother.

Given a choice she said she wouldn't have wanted to be born.

That one statement kept me up at night, and still does, because I know she truly meant it.

The other thing is... will the baby`s diet be such in years to come, or the vaccines it gets, or the polluted air the baby breathes, or life style be such in the future, that any potential benefit obtained from breast feeding (assuming it is clean, pure milk and it isn`t) is erased anyhow?

In my thoughts and my heart, the choice would be simple. Protect the child above all else.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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sd said... It seems like dr. J said to not breastfeed a long time ago, and now saying it's ok as long as mom is on antibiotics??

I think that is a similar situation to what Dr. B says about taking steroids. DO NOT TAKE them unless it is a very serious situation, and if you do take steroids, be sure to take antibiotics too.

Taking antibiotics may lower the risk of passing Lyme (IF it does, no one really knows), but it certainly does not promise there is no risk.

And the studies and experts says there are risks and it can be passed.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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At the bottom of page 34 of Dr. Js most recent presentation it says... ``Never underestimate the damage that can be done by Lyme and TBDs.``

Reviewing this documentation with all of the symptoms- many, many- babies suffer from when contracting Lyme is hard to take. But, everyone should review it. It is important.

Click on the link at the bottom of the page that says `Gestational Lyme`.

https://sites.google.com/site/drjoneskids/pregnancy-and-lyme

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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yanivnaced
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In my mind there's no question.

Will missing out on breast feeding truly destroy the baby's future? Feeding him/her microbe tainted fluid certainly might.

Don't forget most chronic lyme people harbor unknown pathogens which may be thriving despite all kinds of treatment.

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surprise
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What I can tell you from experience, and experience with a couple thousand Moms online

whose children got congenital Lyme disease:

You do NOT want a poor infant with congenital Lyme disease!
This is REAL.

fatigue unrelieved by rest
insomnia
headaches
mitochondrial dysfunction
syncope, POTS or Neurally Mediated Hypotension
nausea, abdominal pain
seizure disorders
impaired concentration
poor short-term memory
inability to sustain attention
difficulty thinking and expressing thoughts
difficulty reading and writing
overwhelmed by schoolwork
difficulty making decisions
confusion
outbursts and mood swings
fevers/chills
dizziness
noise and light sensitivity
increased incidence of ear and throat infections
increased incidence of pneumonia
irritability
joint and body pain
poor muscle tone
gastroesophageal reflux
small windpipe (tracheomalacia)
cataracts and other eye problems
developmental delays (language, motor)
learning disabilities
psychiatric problems (anxiety, depression, OCD)
**autism or Asperger’s type presentation**

(My own thoughts again) congenital Lyme disease affects a developing brain.

If it didn't get passed in utero, IT CAN THEN BE TRANSMITTED THRU BREASTMILK. The SPIROCHETES PASS THRU BREASTMILK.

Sorry to be blunt, but if I can save 1 child, it's worth it.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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randibear
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I know this is not the same thing at all. I loved my baby above all, sometimes including my husband.

so she had four feet and fur, she was my baby. I worried every timeshe sneezed.

when she went into copd and arthritis, i grieved every day. when we had to put her to sleep I cried for months.

we did everything to save her.

ok I'll quit rambling. my point is if I thought I would have ever harmed her in any way I would have been devastated. I couldn't have lived with it.

bottom line here, can you live with it if the baby gets lyme? I couldn't.

--------------------
do not look back when the only course is forward

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beaches
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I didn't breastfeed due to meds I had to take. However, if there was even a remote possibility I could pass on Lyme to my baby through breastmilk, I would immediately stop breastfeeding. Why take a chance?? No one ever got Lyme from formula.
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dbpei
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Congratulations on the birth of your baby girl! [Smile] But such a difficult decision for you. Perhaps the following will help guide you.

http://www.treatlyme.net/treat-lyme-book/lyme-pregnancy-will-my-baby-get-it-what-about-my-health


The following is discussion on facebook from many mothers on this topic.
https://www.facebook.com/treatlyme/photos/a.276474859137364.65021.147788918672626/510217212429793/

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HK
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I would say better to be safe and switch to formula. My son, who just turned 5, was born free of lyme and i had a c section and bottle fed to lessen the chances.

I also had him while in remission, or at least feeling much better so that could contribute to his good health.

Like everyone else is saying, it's all very confusing!

--------------------
Back At It

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supergirl
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I hear you! The attachment through BF is so important, and the nutrition, too. I am planning a pg and plan on BF. I am doing a naturopathic treatment in lieu of abx.

We never talk about the issue of someone post treatment passing on the lyme antibodies to baby. But, I think it would be good for baby to get your antibodies!

Is it possible to get your BM tested for lyme?

Remember that hormonal fluctuations can cause symptoms. Can you get your hormones tested?

I suggest testing BM, adding acupuncture to help balance hormones post partum, and boosting your immune system.

Your mother's intuition is a great tool!

enjoy your precious lo!

--------------------
PHOENIX: mythical bird that rises from the ashes
July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began
bite: unkown - no rash

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supergirl
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Okay, this is just my own brain. You've been on abx for a long time. Isn't it possible that this long time constant use of the same abx could end up causing the symptoms?

We know that abx kills everything including what is good, so maybe your immune system is crashing because of the long term abx.

It's a thought!

What does your mama gut tell you?

hugs!!!

--------------------
PHOENIX: mythical bird that rises from the ashes
July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began
bite: unkown - no rash

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Tincup
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Hope those who promote breast feeding while having Lyme, or taking herbs rather than antibiotics, have solid scientific evidence indicting the herbs won't harm the baby and the Lyme won't infect the baby.

Grrrrrrrrrrr......

If someone promoted or told me it was ok to breastfeed while having Lyme, or to skip doing antibiotics and take herbs instead, and it negatively affected me or my baby in any way- KNOWING and showing there is a better route- they would be - at the very least- liable for damages and would be paying all of our medical bills for life- IF the baby lived.

I know of no studies or even good info indicating Lyme antibodies can be passed through breast milk from mother to baby, and if they were this would be at all helpful or a good thing.

I can't recommend ``guess work`` or doing anything stupid when it comes to affecting the life of a child. (Sorry to be blunt- but this is a serious thing.)

I too don't like taking antibiotics and/or promoting them when someone is pregnant or plans to breast feed, but until other options are tested tried and true to be safe, it is irresponsible for anyone to offer their unsupported thoughts as anything but that, unsupported guess work.

We can experiment on ourselves if we want, but it is not acceptable to experiment with the life of a child. Ever.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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ArtnSoul
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Congratulations on your baby! It is a tough spot to be in, for sure...

this doesn't help, but I have a daughter and a son who have congenital Lyme. I also breastfed both of them....I did not know I had Lyme disease until years after their birth....

Had I known - I would have done whatever I could have to insure that they would not have been infected.

Although they have both said that they would much rather be alive WITH Lyme, than to not be alive at all! (so my two are happy to be alive - even with this crappy disease)

I guess it is just how you look at things... I on the other hand as their mother - hate the fact that I unknowingly, am the reason they have it!!!

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bis
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I was just told I tested positive for Lyme and have been breastfeeding my toddler for 3 years. I was definitely feeding 3times a day with the bullseye rash and symptoms. I am so upset and confused about the lack of info on this. My pediatrician said it can only be passed on with direct bite of tick. Most LLL say that whatever illness you have your breastmilk builds antibodies to it and passes them on the the baby. We had to ween within the last 2 weeks because I was being treated for muscle inflammation. postpartum symptoms are hard regardless of Lyme. Good luck with your decision. Feel free to email me if you need someone to talk to.
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Sammi
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bis, be sure that you and your child are evaluated by a knowledgeable doctor. If you need a recommendation, post on the "Seeking A Doctor" board.
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Donna Campbell
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Breatfeeding, is natural process - why people ignore this importance in 2020.
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Kylie
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Many moms don't feel like doing so or have personal reasons that they don't share with their husbands. Either or other way there are positive alternatives like https://anyorganics.com/dutch-hipp/8-hipp-dutch-stage-1-organic-combiotik-infant-milk-formula-800g-0-6-months-4062300168923.html it’s pure natural ingredients and does the same job as if direct breastfeeding. Plus if the infant is with mom at job or somewhere else in public, this option to feed the baby will very good. And situations like that happened very often. Better to be ready, because I think women sometimes can have some kind of issues not to give milk. I'm not a specialist, but I will be a father soon, so I'm prepared - because that's how I do.

[ 10-15-2020, 08:08 AM: Message edited by: Kylie ]

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lisaloo
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quote:
Originally posted by Donna Campbell:
Breatfeeding, is natural process - why people ignore this importance in 2020.

yes, if there's no lyme. It's like saying you can give water with lead but also some good ingredients, or water with no lead without some helpful ingredients. Which do you choose?

My doctor said antibiotics can keep lyme from entering the cord to your baby, but not so great at preventing spread through milk.

--------------------
Lisa T

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