posted
Just wondering if it is possible to transmit lyme during pregnancy. My kids all have various almetnies that don't seem directly lyme related but may be. Candida, hypoglycemia, migraines, fatigue, loose ligaments (colapsed arches and ankles in 4 year old), elevated liver phospherous(know thats spelled wrong) in a two year old. My seven year old is struggling to learn to read. She can now read, after alot of work but she seems to have an audio processing problem. Anyway just one more concern now that I have read that it is passed throught he placenta barrier. Help!
Posts: 68 | From USA | Registered: Aug 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Yes I think its possible and if you breast fed probable.
posted
It is highly likely that my 2 yo son got Lyme from me either while in the womb or through my breastmilk. He had a positive Western blot (and reverse Western blot) for Lyme. Three LLMDs asked if I still had the placenta or the breastmilk so it could be tested. No such luck!
My unsolicited recommendation is to have them tested if at all possible. Good luck!
Posts: 261 | From San Mateo, CA | Registered: May 2005
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WildCondor
Unregistered
posted
You are supposed to treat the Lyme throughout your pregnancy. If you did not treat, then yes, you may have given your children Lyme disease. You are not supposed to breastfeed if you have Lyme disease. If you breast fed then you could have infected your children. Did you know you had Lyme when you were pregnant? You MUST treat during pregnancy and then have the baby's cord blood, placenta and urine tested for Lyme at birth. If its + you must treat the infant. At this point you should go to Dr. Charles Ray Jones, a Lyme Literate Pediatrician in CT. Its essential!! Please do not wait any longer, get your children to a LLMD, and at the very least, have them rule it out, if that is possible. Best of Luck to you.
posted
Can I ask why two posters said that if she breastfed, she definitively infected her children? Yes, they have found spirochetes in breastmilk, but do not have concrete evidence that it is transmitted 100% of the time - not even close. I didn't know that I had Lyme while pregnant with my daughter, breastfed, and she has tested negative, and has NO symptoms. Just think that we need to present the evidence, not just feelings. This is from Tincup's pregnancy update:
"At the Hope to Heal Lyme Conference in Reston, VA (2005), Dr. Burrascano and Dr. Jones both spoke about Lyme and pregnancy. We all are thankful they are doing this research and continue to help mothers and children.
...Breast milk can carry the Lyme spirochetes and can possibly be infectious to the baby".
CAN POSSIBLY. Obviously, most LLMD's discourage breastfeeding to eliminate the possibility. But this does not mean that breastfeeding always transmits Lyme. I think it's important to get the facts straight.
Shelly
[This message has been edited by skrwolf (edited 11 August 2005).]
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Both my children have lyme--one had bell's palsey at 6 weeks (stage 2 lyme).
Now ages 4 and 7 they were both diagnosed over Christmas. I breast feed the 7 year old for two years and the 4 year old for one.
No doubt in my mind they got it at birth or from breast milk.
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
When are the stats low enough? 10% of the time? 50% of the time? I personally think it is an unacceptable gamble.
Getting fewer colds isnt going to matter if your child is in a wheelchair! And if someone feels that strongly about breastfeeding then they shoud hire a wet nurse who is healthy. Or are they thinking about themselves more than the health of their child?
HIV is not always passed to children, but should someone with HIV breastfeed? Should a woman with HIV get pregnant? After all the child may be HIV free.
To gamble with a child's health, I just dont understand it.
If someone doesnt know they have a condition, that is not the same thing. But to knowingly put your child in harm's way.
You can put your infant in the middle of the road and 99.9% of the time the car with swerve. Is that 0.01% chance worth it??
I don't think there has been any formal study -- and I know some of the LLMD's will not say point blank that it is probable if you breastfeed..
but Doc J tells hos patients to absolutely not do it, and that the probability of transmission through breastmilk is extremely high.
He also is not a Doc that tends to overreact to things.
Someone should be studying it, it's a tradgedy they don't.. becuase he surely doesn't have time.
He also notes an extremely high percentage of untreated pregnancies have children who contracted the disease.. and treated pregnancies (using his reccomendations) fared extremely well, and I believe they are following the children of those for some time.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Hi Mo... Good to hear from you! I need to email you...
First, I am NOT suggesting breastfeeding. I am sorry if my post implied that.
What I was suggesting that just because she breastfed before diagnosis of Lyme, does NOT guarantee that she gave it to her children..
From Tincup's Lyme update:
"Notes from Dr. Jones, who has treated over 7,000 children with Lyme disease.
Over 300 of these children have Lyme as a result of trans-placental or breast milk exposure to Lyme. These children have gestational or early neonatal Lyme disease from their mother's undiagnosed, untreated, or inadequately treated Lyme disease. These children had a myriad of problems which improved or resolved with prolonged oral or IV antibiotics. Of the 300 children, several have been off antibiotics and are doing well, so far."
This just doesn't say 100% transmission to me.
Anyway, I wish we had a more formal study. I would love to start some kind of registry for Pregnancy and breastfeeding. If anyone has any ideas, let me know!
Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
There are some studies that shouldnt be done. I believe this study should NOT be done.
We know that the bacteria is in breast milk and can possibly be passed. That is all we need to know.
The only way to do a study would be to knowingly put children in danger. Any mother who would enter a study like this should be arrested for child abuse.
Kinsey did a study . Was it worth it?? You tell me. His "study" found that it was all good.
So a few children were damaged...at least we have a study. If only 1% of the children suffered is that all that bad??
I just dont understand being willing to risk your child's health..even for 1%, even for 1/2%...I just dont understand.
[This message has been edited by Kara Tyson (edited 11 August 2005).]
Please do not compare Lyme to paying someone to molest children. They are not even on the same spectrum. I'm insulted that you even made the comparison.
My previous post said REGISTRY - NOT study. To collect data from those with Lyme and pregnant, breastfeeding or not, children born with Lyme or not. Those that have ALREADY made the decision, were treated or not, outcomes, etc.
This is widely done for breastfeeding and medication. I WAS NOT suggesting intentionally breastfeed with Lyme just to see what happens. Just log the data for previous events.
Regardless of your vehement feelings, people will make their own decisions, and yes, some will breastfeed while on abx. I think it is important to assess the outcomes of these situations to help make decisions for those in the future.
I will be contacting Dr. Jones to see if this could be done, if he has any info to help get started. Please contact me if you have any suggestions or ideas to make this possible.
posted
Yes, Niki, I believe that is true....My two girls must have recieved it from me because I see no other way my youngest (when diagnosed was 13 months old) could have gotten it.
However, I did also breast feed both of them for a short 6 weeks. Not sure if it was through pregnacy or breastmilk.
I am sure NO ONE would intentionaly pass such a horrible curse down on their own children.
I wish you the best Niki. It is very tough at times.
Posts: 688 | From SW Arkansas | Registered: Dec 2003
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I'm so sorry to detract from your original post!!! I'm also sorry to hear about your children. Yes, I believe that it can be passed to children through pregnancy.
I would suggest contacting your LLMD or Dr. J in CT, and testing your kids. If they test positive, at least you know where you are at and can treat if appropriate.
Most importantly, don't blame yourself!! Like lookin' for answers said, none of us would intentionally harm our children. Remember that children usually do very well with treatment and are very resilient.
posted
The truth is...we do not have the facts. The risk of breastfeeding and transmitting Lyme to your unborn child is very high. All it takes is common sense and logic to see how you can infect your child. A baby can't talk so nobody will know it's sick until perhaps months to years later.
People who do not treat their disease during pregnancy and who also breastfeed are taking an enormous risk, and in my opinion being extremely stupid. It's one thing not to know if you have Lyme, assume you are healthy and breastfeed. It's a whole different story to know you are infected, not treat during pregnancy and then breastfeed. Each case is different and the research is lacking!
posted
Wow what a response. Ok I did not know I had lyme disease when I was pregnant or breast feeding. I took very good care of my health with the information I had when I was pregnant and breast feeding. Now at thirty four they are just putting together the pieces and having exhausted all other possibilities are now suspecting lyme disease. The only time I remember getting bit was in 84 and I then developed mono like symptoms over the next year and the story continues over the next twenty years. I am still waiting to hear from my infectous disease doctor about treatment. As far as having the children tested should it be through Igenix or is regular lab ok. The Igenix bill is not possible financially at the moment. From the reading I have done it is believed that that the virus is passed through the placenta and that in the majority of cases the stomach acid kills the bugs in breast milk. At this point it is irrelavent they all need to be tested and potentialy treated. I understand how strongly people feel about the health of children and I am not planning on getting pregnant again for the very reason of this disease but looking for answers in reasearch of pregnancy and breastfeeding should not even be mentioned in the same breath as child molestation. Lets get a grip here. I'm just looking for answers to help my family's health. Thank you for all your input and advice.
Posts: 68 | From USA | Registered: Aug 2005
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So sorry to hear you're having to deal with this. May I please make one more suggestion: see a Lyme Literate MD for yourself and your children. It's very important to get proper treatment.
The typical MD will not test for coinfections and will likely treat for 3 weeks at most. My husband has lingering coinfections because his longtime family MD only treated him for 3 weeks. LD and it's treatment is very controversial. The position papers are www.ILADS.org may give you a feeling for the work of the LLMDs who trying to educate the medical community about LD.
IMHO IGenex is the way to go for testing. It's their specialty. The "owner's" son had LD as a teenager. The son is now a LLMD.
I'm be thinking of you and your family and hoping that you all are able to get healthy. With best regards and supportive intentions,
-DS
Posts: 261 | From San Mateo, CA | Registered: May 2005
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
S, my comments are not directed towards you.
I rarely respond to anyone directly. Ever. ** My point is that some studies just should not be done because of ethics. And studies mean nothing. Plenty of flawed data comes out of official studies.
But I stand by my statement that to do a study to find out the % of chance to spread Lyme (or any other disease) is child abuse and child endangerment.
And we have had people on this site who knowingly want to get pregnant and risk be damned.
Oh, and I NEVER compared breastfeeding to molestation (although I believe the Le Leche League borders on it defending legally women who breastfeed 10 year old children!).
I compared the ethics of medical studies.
And yes..to knowingly put your child at risk is abuse.
[This message has been edited by Kara Tyson (edited 11 August 2005).]
I'm almost sorry I suggested you post this topic. Pregnancy and Lyme is not something I know anything about. Please don't take offense at anything anyone has written here -- they probably did not mean anything personal by it.
My suggestion would be to try to find an LLMD for both you and the kids. Let the LLMD make the decision about testing -- after all, we all know that Lyme is a clinical diagnosis.
Maybe the doctor could make the diagnosis based on symptoms and save you the cost of doing the tests which we all know are expensive.
Don't know what insurance coverage you have if any, but MDL is also a reputable lab and they may be participating with your insurance company -- I know they participate with hubby's insurance whereas IgeneX does not.
Also suggest that you read the links TreePatrol has provided if you have not yet done so.
Wishing you the best.
Feel free to ask whatever questions you need to to get to the bottom of this illness for both yourself and your kids.
Bea Seibert
[This message has been edited by seibertneurolyme (edited 11 August 2005).]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I'm glad this topic was posted. I read that pregnancy can re-trigger Lyme. I believe, in my case, it did. But hard to know. I didn't know I had Lyme till last year and I'm hoping that my child born while I had Lyme will choose to be tested. My Lyme was never treated until now, and I nursed her for 26 months because she was so allergic to foods.
If I had know I had Lyme, would I have got pregnant? Probably, because there were other considerations involved, and she's a jewel! Would I have nursed. Still probable, because of the allergies, and the bonding that came for us from breast-feeding, besides the nourishment. But I wouldn't have wanted her to get Lyme, either. And I hope she doens't have it.
When one considers that a child could get Lyme no matter what you do, or so many illnesses or other problems, I personally can't see Lyme patients giving up having children as a general rule. On the other hand, I can see most points made on this page. The baby's health is always, I think, of paramount importance. What is best for it? Touchy, deeply personal question.
The study I'd like to see done is one where the children are tested of those who, like me had Lyme while pregnant and nursing. This poses no ethical problems. Or did someone say there is already such a study? If so, how many people were tested? What were the study criteria?
It's important to know that it is POSSIBLE that Lyme is transmitted through the placenta, and (from what's been said here) through breast-milk. Knowing that, couples can make their decisions.
I know it's not the same thing, but my parents' vision is poor and they actually went to a genetics counsellor when my dad was in med school before making a descision whether to have children or not. They decided, despite the findings, that what they had to offer their children in other areas, genetic and otherwise, was greater than the imperative to not pass on to their children bad eyesight. I'm glad they had all of us, despite our poor eyesight!
Please, I'm not comparing poor eyesight to Lyme here. I wouldn't want to pass Lyme to anyone. I just think there are other considerations in life, and we have to take the data we have and make personal, careful judgment calls based on all that we feel and know. Those are the only ones we are responsible for.
Just a thought. Thanks for your posts.
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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I too was unaware of my lyme at the time of my pregnancy.
I had been to MANY docs trying to understand my strange symptoms and had been told several years earlier I possibly had "Cytomegaliavirus -- CMV", "Epstein-BArr" and of course CFIDS!
At the time I found out I was preggers (TOTALLY unplanned), I repeatedly told my OBGYN about the alleged CMV and my symptoms etc. He of course BLEW ME OFF!
Had a troublesome 1st trimester, 3rd trimester on bed rest, 38 week bleeding and a horrific delivery (C Section)which resulted in oxygen loss to my daughter (ie: Cerebral Palsy).
I did not find out I had Lyme until Katie was 10 years old and did not get her diagnosed until she was 12 ! Needless to say, we are Late Stage folks!
Hubby tested positive too.
So . . . Yes , I think it's transmitted gestationally (as per Katie's dx w/ Dr. J) and note, I DID NOT breastfeed !
I also know of at least one lymed person who was treated thru her "planned" pregnancy and the child was born w/ lyme.
Due to Katie's other issues, she never played outside, hiked in the woods or met a tick anywhere!!
Her symptoms are often hard to seperate as they could be attributed to the CP too. Some included: Bells Palsy (Not a CP thing!) at age 3 or 4, frequent stomach aches and headaches, problems w/ focus and cognitive issues - she's lost IQ points (not a CP thing), frequent pain, depression and the worst FATIGUE and WEAKNESS!
Also note, last Christmas I made my mom take the Bowen test and hers was positive too! This agreed w/ my former LLMD's opinion that our illness was familial transfer.
Hmmmm - I'm so sorry you are dealing with this and hope you are able to find adequate treatment for you and the kiddos.
Sherry
-------------------- Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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Sorry to hear of your problems with this. I wish I could get my 18 year old to be tested, and not just for my peace of mind. Seems like the sooner one finds out, the sooner treatment can start, and the more likely there is to be improvement, if she tests positive. Or am I wrong?
I'm confused about how Lyme is transfered, besides gestationally and through nursing. Can you give your husband Lyme? What are the possibilities here. Any good sites to answer these questions?
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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![[bonk]](graemlins/bonk.gif)
BLEW ME OFF!![[Mad]](mad.gif)
and did not get her diagnosed until she was 12 ![[cussing]](graemlins/cussing.gif)
! Needless to say, we are Late Stage folks!
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