posted
I really would like to get into contact with women who have decided to get pregnant.
I have a son with lyme who got it from me congenitally. I did not know I had lyme while pregnant and was not on any treatment before or during the pregnancy. He is doing well although still in treatment.
I desparately want to have another baby and my doctor has told me that I absolutely can get pregnant and soon even (probably by this Fall) if lyme and coinfection treatment continues to go well.
I am dying to talk to women who have been in this situation and have made the decision to get pregnant.
How did things turn out for you and your child?
My doctor tells me that the risk of transmission is extremely low if I'm treating throughout pregnancy and even if the baby does get lyme, it would be curable.
He's a very famous and wonderful lyme doctor. I want to trust him, but it's hard because there's not much published on the subject.
Posts: 63 | From Humboldt County | Registered: Jul 2008
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posted
I do not have any answers for you but I am very interested in seeing the replies!
I have 2 (8 and 1) children who probably both have Lyme (maybe co's too, don't know if I have them yet) from pregnancy. I just found out a few weeks ago, so I was not treated at all prior to now.
The kids will be tested in a few weeks, after I start the IV Rocephin. My LLMD wants to get me started before tackling the kids.
Good luck!!!!
Posts: 114 | From Atlanta, GA | Registered: May 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Luvdogs here is due to deliver a baby boy in six days.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
My wife is going to restart abx in July. Once she's on them we're considering trying for child #2.
Posts: 655 | From USA | Registered: Sep 2007
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posted
I am going to restart abx. in September and try to get pregnant in the fall. I have decided to take amox. during the pregnancy, maybe start a month before trying to conceive.
I have talked to many women who did not pass lyme to the baby.
Posts: 871 | From NJ | Registered: Mar 2007
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posted
Isn't it easier to keep Lyme from passing the placenta than co-infections? That is what I would worry about more.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
I, too am very interested. I had thought that I never would have another baby as I passed LD on to my daughter(now 10), but I have met a wonderful man that really wants to have a baby.
It has really got me thinking. I am so afraid of passing this on to another child, but at least this time I could be prepared ahead of time...and during of course!
I feel very selfish for wanting another child. I am interested to read other responses. Take care all!
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
There is a group on Yahoo....preglyme. All women there with the same concerns.....and trying to conceive, thinking of it, or pregnant. Lots of good info.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Dr. Charles Ray Jones - Perhaps the most famous Pediatric LLMD has submitted among his research studies, "Dr. Jones discovered that 66 mothers with Lyme disease who were appropriately treated with antibiotics prior to conception and during their entire pregnancies gave birth to healthy infants." (Pg. 106 book: Lyme-Autism Connection) -p
Posts: 641 | From So. CA | Registered: May 2008
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With all due respect to you and Dr. CRJ, my sons were considered "healthy" according to all of their pediatricians over the years.
No one ever said, "Wow! You kids seem to have a terrible infection?"
It is like the woman in the movie who has the baby and hopes that he is well even though he has positive bands.
I'm lucky because I already have two children, so this isn't my sruggle. Instead it is constant care of children who are sick.
I feel for all the woman/couples who struggle with this. I don't have it to do over again, but if I could, I wouldn't have biological children.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
peacemama,
Did you treat during pregnancy, or were your children treated before they were 4?
Those are supposed to be important factors.
I'm so sorry for your struggle.
Dr. Jones in not a typical pediatrician, and has gotten many very sick children healthy or at least very much improved (treating earlier brings better outcomes).
If he was the one controlling that study, I am sure the children were truly healthy. He is fantastic at finding all kinds of things wrong in children with Lyme that others have overlooked. He is an expert at clinical diagnosis of Lyme in children.
I have more thoughts and info on this topic, but I am VERY tired right now and wouldn't be able to gather all the info, so could someone please bump this if I don't respond in the next few days? I am having surgery tomorrow but would still like to participate in this discussion once I am feeling okay.
Posts: 4590 | From Midwest | Registered: Jun 2008
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I actually learned the part about co-infections not being able to be prevented from a post/thread of yours.
Maybe my memory is failing. . but I thought so.
I did NOT treat during pregnancy. I have a 12 year old and a 4 year old. Just started treatment in january. If I had to choose which illness to irradicate, it would be Bartonella. That is the worst to watch.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Well, I said I would come back later, but since I'm online now I'll speak about that a little.
At first, I was told by LLMD's that there was nothing they could do to prevent coinfection trasmission, but that things like babesia were usually not as big of a deal when you have them without Lyme, so if you can prevent Lyme trasmission, the coinfections may just go "subclinical" or into remission on their own.
Understandably, that is not super-reassuring.
Well, as many here know, recently I got pregnant, unplanned. Which is ironic considering I was always super-concerned about what to do once it was time to plan starting a family (would I get pregnant, adopt, etc).
Even my current LLMD was not aware that Dr. J is now using Mepron in pregnant women for the babesia issue. From what I understand this is a "newer" thing, and I just learned about this in the past few months.
I am not sure if it can completely prevent transmission of babesia in all cases, but Dr. J says that he has followed a small number of women, and the pregnancy outcomes were better when Mepron was used during pregnancy than when it was not.
Without Mepron (and I'm assuming this was women he wanted to take Mepron that refused it, so they were probably pretty sick with babs since this was when he was experimenting with this) there were worse outcomes. If I'm remembering this correctly, I think the problems were heart-related or high temperatures. But please do not quote me on this. My doctor consulted with Dr. J, so this was all repeated to me second-hand.
All that said, I do know of moms who only treated Lyme during pregnancy, and even though their children do test babs positive, they seem asymptomatic. So maybe it is true that without Lyme, babesia can be handled by the body. In fact, some people in the population do test positive for babs and are asymptomatic.
I was testing IgM positive for Mycoplasma pneumonia at the time of my pregnancy. They (my LLMD and Dr. J, I think....the llmd implied Dr. J said this) said that the Zithromax they put me on would cover the Myco. Zithromax can treat some forms of Bartonella, so in my mind, the Zithro was for Bart too.
So, I was taking Zithromax plus Mepron plus Omnicef. I ended up miscarrying. I do not think it was from the Zithromax or the Omnicef, and I am hoping it was not from the Mepron, but I react VERY strangely to Mepron, so I do not think most women would have this issue.
Mepron makes me incredibly run-down, and I have heard this happens in people with severe mitochondrial issues or adrenal issues. Don't know right now if I have either, but it makes sense for me. For me, the getting run-down on Mepron is not a herx....it is bad and gets worse as the months go on.
If I had to guess what caused my miscarriage....I have a few ideas. One, I was on Minocycline and then Malarone before I knew I was pregnant. Mino is BAD during pregnancy, and Malarone will suck up all your folic acid.
Also, I wonder about the Myco. My miscarriage was a blighted ovum, so the embryo never really developed. Thus, I doubt Lyme had a chance to infect the baby and cause problems.
But, Mycoplasma is a known cause of miscarriage. It restricts bloodflow to the baby, indirectly. The infection itself does not do this, but what your body does in response to a myco infection ends up getting less blood to the baby.
So I would highly recommend women take care of Myco before trying to get pregnant. MDL is one of the labs I tested positive through.
I was not testing positive for many viruses at the time of pregnancy.
The other theory I have is that it was just random for me, since 18% of pregnancies end in miscarriage.
Hope my recent experiences can help someone else. If anyone has questions, you can PM me. There is also a really good edition of Lyme Times that is the Children's Edition.....it has great studies, treatment recommendations, and what symptoms to look for. It also has one (maybe two) articles about Lyme during pregnancy.
You can get it from www.lymedisease.org, and you'll see it on the bottom with a blue cover; I think it is the 3rd from the left.
Overall I think it is okay to have children if you wait until you are as healthy as possible, are willing to treat throughout the whole pregnancy, and take your medicines on the dot (amox needs to be taken every 8 hours on the dot, ceftin or omnicef look into too but I try to do every 12 hours on the dot....you don't want your blood levels of these drugs to get low in preganncy.
Combine Amox, Ceftin, or Omnicef with Zithromax.
And you also have to be willing to do extensive testing at birth, and pursue agressive treatment for your child in the instance things come up positive. Treatment should happen before age 4. Early treatment is usually very successful. (earlier the better in my mind. I read a study about newborns being treated with IV clinda/quinine for babesia and all got better..some it was congenital, some received bad blood transfusions after birth)
Because early treatment is usually very successful, I think in good conscience I will be able to get pregnant again and not feel guilty. BUT, I am going to wait until I am a lot healthier.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
You are all very lucky to have the knowledge that you do.
I am treating an almost 5 year old and an almost 13 year old. Although I would have hated to have a newborn on IV antibiotics, I would have preferred to have the knowledge.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
Thank you everyone for the replies. All very helpful.
My lyme doctor is very supportive of me getting pregnant when the time is near. (He thinks I'm getting very close).
He said we must deal with the coinfections before I get pregnant because they cannot be dealt with during pregnancy. (He didn't mention using Mepron).
When I asked him if it was his wife with coinfections and lyme and they wanted a baby, would he have one? He said, "If she was treated aggressively before and during treatment then he would be fine with it."
Then, I asked him what my chances are of bringing a baby into the world that would be sick for the rest of its life, he said "None. It just doesn't happen like that." If the baby tested positive for lyme and/or coinfections at birth, we'd treat the baby right away (probably for about 6 months) and then it becomes a non-issue. Children get cured.
What does everyone think of this? Do you believe it? This is Dr. H. I'm speaking of (Redwood City). Very knowledgeable.
Lymer
Posts: 63 | From Humboldt County | Registered: Jul 2008
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quote:Originally posted by lymer: Then, I asked him what my chances are of bringing a baby into the world that would be sick for the rest of its life, he said "None. It just doesn't happen like that." If the baby tested positive for lyme and/or coinfections at birth, we'd treat the baby right away (probably for about 6 months) and then it becomes a non-issue. Children get cured.
Just to give a counter-example. There is LN member number 13287 whose child was born positive for Lyme and was given IV abx at birth. This failed to eradicate the Lyme and I think they needed to do repeat abx treatments in the early years of his childhood.
Posts: 655 | From USA | Registered: Sep 2007
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bettyg
Unregistered
posted
This will take you to topics dealing with Lyme and pregnancy on the CDC website. http://tinyurl.com/ywo8un
As for their comment about no proof of transmission through breast milk...I remember Mo sent a sample of her breast milk to a lab and they did find Bb! AND her baby did develop Lyme.
hoots...best wishes & success on yoru surgery today. xox
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