Healthy Pregnancy with Chronic Lyme?

Hi everyone... My name is Sarah, and I am new here. Hello! I apologize for the spewing of background information, but bear with me... there is a question here. :)

I was infected with Lyme in 2002, and not diagnosed until 2010 - 5 weeks after the birth of my daughter. She was also tested at that time and she does have Lyme. So far, she seems to be ok. She is slightly delayed in speech, but with weekly pathology she is catching up quickly. She's 2yrs 3mos now. :)

I was treated pretty aggressively with several months of oral antibiotics and 4 weeks of IV antibiotics (my insurance co. cut me off at 4 weeks, and I couldn't afford to proceed with the remaining 4 weeks my LLMD recommended. That's a WHOLE other topic. ). I have been feeling good, most of my symptoms quieted down, and I was settling into the idea that maybe I was really better. I could still sleep for days straight, and my brain is still mush, but all told - I felt a thousand times better.

Fast forward to two months ago - I got an infection in a wisdom tooth. I had to wait about a week and a half to have it surgically removed, and by the end of that week about 80% of my Lyme symptoms come ROARING back. I can't even describe the emotions that this caused. I think rage was the definite forerunner though.

My very intense Lyme symptoms (and the first inkling that something was seriously wrong with me) began at about 7 months pregnant with my daughter. Hindsight has proven that my body just couldn't do both anymore - make a child and battle Lyme. So it chose to focus on making my daughter - thank God. But now, after this tooth infection, I am left to believe that I am absolutely still battling Lyme. Seriously - if I can't even handle a tooth infection I have some serious fears about my future health.

After I had my daughter, my husband and I decided we wouldn't have any more children. We couldn't get any of my doctors to tell us with certainty that I would NOT infect another little one with this disease. So, case closed - if there is a chance - no more babies.

Fast forward again - I go on Mirena for birth control. about a year and a half go by on it, and then I start having ridiculous, ridiculous heart palpitations. At first I thought that Lyme had finally reached my heart and this was the end. Lol really - they were THAT bad! Constant, all day, all night palps. Long story short - my cardiologist said that if the Lyme had in fact reached my heart, I wouldn't be standing there talking to him. So that was good news. :) After a long process of elimination, we deduced that it must be the Mirena.

So I get that removed, and the palps stop almost immediately. Hurrah! That was about 3 months ago. So now I have mild/moderate Lyme symptoms, no palps, and unfortunately no birth control. The hubs and I have spent the last few months being UBER careful and trying to decide what to do birth-control-wise, but now I'm afraid it may be too late. I have yet to take a test (tonight!) but I am suspicious that I am currently pregnant. If I am, I'd be only about 3 weeks along. Not uber careful enough, perhaps.

Finally - my question! Ideally, I am not pregnant, and I can continue to focus on the health of my daughter and myself. However, if I am, I want to be sure to keep positive and do everything I can to ensure the health of both me and the baby. I am wondering if anyone has had a successful, healthy pregnancy while battling chronic Lyme? I would truly love to hear your stories - how it went, what you did, etc. I didn't know I had Lyme with my first pregnancy, so this would essentially be a new experience for me.

I am ALL ears! Thank you!

Post Edited (HarperEllen) : 6/5/2012 11:45:05 AM (GMT-6)

twinkl1999, Thank you for the info!

I had a hard time getting pregnant with my daughter. (And as a side note, my husband and I we're together for 10 years using absolutely NO birth control and never had a pregnancy. So maybe it is Lyme related? I don't know either.) We actively tried for over a year, and we were actually starting in-vitro conversations towards the end, when I finally got pregnant. This time however, we were certainly NOT trying. I don't know how it happened so easily, it's sort of shocking.

I had a positive pregnancy test last night. I'm going to call my Ob and my LLMD and get boat loads of blood work done to see where I stand Lyme-wise. I hope that there are some safe preventative measures I can take early on to make sure this little one doesn't contract this effed up disease!

Good luck to you, twinkl1999. It'll happen! Is your Lyme under control?

I have had chronic lyme over 16 years...I had an incredible pregnancy where I felt better than I ever had. Not one physical issue. I was able to get outside every single day...while the doctors told me my baby would be a stillborn & that I could die in childbirth I ignored them & kept my hopes up because I felt ****ing fantastic. My boy was born naturally without any complications at all. Not one. I was up and walking around the next day.

Hes three & a half now and advanced. He is developmentally ahead of most toddlers so much that I have had preschools trying to convince us to put him in theirs so he can be a role model for the other kids. Sorry if this sounds like bragging...Im just saying you can have a great pregnancy & a great healthy baby even with chronic lyme.

And so far he is all good. I hope it stays this way. Im very aware that this disease can creep up at any time so I keep my eyes wide open & am very cautious about his diet and so forth.

Listen to you intuition...its never wrong. If I had listened to others I would not be here and neither would my son.

Hi HarperEllen - welcome and congratulations! I don't know much about lyme and pregnancy, but my best advice is to do your own research (but don't drive yourself crazy with it) - sometimes even the most well-meaning doctors can give us less than accurate information, especially when it comes to lyme.

A lot of people have recovered from lyme disease successfully just by supporting the immune system - which is obviously something you can do while pregnant. There has been some research done about lyme, pregnancy, whether it can be passed on, etc., but I don't know that any of it is conclusive. We're here to help however we can! Are you currently seeing a doctor about the lyme? Now might be the best time to have a LLMD in your corner. Best of luck - don't be a stranger!! And congrats again!!

I just found out I have Lyme Disease and I read in your post that your first child has Lyme Disease. As I sit here wondering when I got infected (many hikes in mountains; never had the bulls-eye rash; completely shocked by diagnosis), I can trace my symptoms back to shortly after I delivered my son in 2001.

So, I just want be clear on the possibilities: your daughter got this from you during pregnancy or you do you think she may have been infected after birth?

Thanks for the info! Glad your pregnancy is going well!

Hi... I'm not sure if my reply will help at all as my situation is quite complicated but I'm going to try.

I was bitten by a tick in may of 2012 and go the classic bullseye rash. I was in the secon trimester of pregnancy at the time. I live in Nc and no one around here knows squat about Lyme disease. Long story short, I took amoxicillin for a month since all other antibiotics were deemed unsafe for pregnancy. I had a Lyme titer after the amoxicillin and it was negative so I just thought that was the end of that.

The child I was carrying at the time was stillborn two weeks before her due date. At the time, Lyme didn't cross my mind as a cause since I was told I definitely didn't have it. In hindsight now I'm not so sure.

Anyway, I have gone on to have another baby who is healthy. He is 14 months old now and has not shown any symptoms of Lyme. He has not been tested but he is very active, smart and completely on track for everything, so I DO think it's possible to have a healthy baby while battling chronic Lyme disease. I wasn't aware of my condition until very recently though and I don't know if I would have risked it had I known. Definitely try to find a specialist who can advise you on this.

It's clear that there is a serious deficit of conclusive information when it comes to Lyme in general but in particular regards to pregnancy. I was infected during my first trimester of pregnancy, had the rash but no other symptoms. I saw a Dr. Who dismissed the whole thing. The rash went away and I forgot about it.
I had a great pregnancy, delivery and my daughter, nearly three now, is thriving. My symptoms did not appear until 10 months after her birth, under circumstances of extreme sleep deprivation. Then I was diagnosed and treated for melanoma. Then I had an onslaught of symptoms featuring tingling, neuropathy, serious seziure-like sleep disturbances and leg pain in the leg I was bitten in. After a million tests (including neg western blot) it was determined that I was simply stressed. I knew that was not correct. Then suddenly, I felt better... For four months! Then after a flu shot, I had terrible debilitating head and ear pressure, along with all the other symptoms. Things got worse for 4 months. Finally, my knees filled with fluid and this helped me get the Lyme diagnosis (still neg on all Lyme tests). I did 10 months of oral antibiotics, never recovering, along with acupuncture, sugar free, low carb, high veg diet.finally, I just couldn't do the antibiotics anymore and switched to homeopathy, natural protocall featuring a hardcore diet. I began to get much better! On a whim, my husband and I decided that we would give getting pregnant a try.
I got pregnant on the first try. Now, six weeks pregnant, I do have a flare of some symptoms, but others, including the seizures, seem to be under control still. At the moment, I am vacillating between feeling totally irresponsible to myself, my family and this new baby byp taking this risk of getting pregnant not knowing how it will effect me or the baby. This is coupled with the fact that I have suffered a great deal over the last two years and have chosen a path that will likely not be the shortest path to feeling better. Pregnancy has it's own woes.on the other hand, had I waited, I was running higher and higher risk of never having another child (I'm almost 42 and all this illness had pit our plans on hold.) so there was no right awnser for me. Clearly, my body was ok with getting pregnant. What I have learned from Lyme is that you must learn to find peace and wholeness within uncertainty and suffering. Each doc I speak with seems to have a take on pregnancy.. But nothing is truly known.
Lyme is really an individual experience for each strain within each body. For me, I am trying to renew my faith in my own immune system and the power of mind body healing. I would love to hear more stories of natural protocols that worked for people. I believe the antibiotics were helpful but ultimately not going to cure me. My naturopath actually believes that going back on antibiotics will be the way to ultimately rid myself of this (perhaps I never found the right one.) but I am really trying to place my faith in self healing.
Small detail but One of the trickiest things for me at the moment is dealing with morning sickness.my body wants nothing but white carbs and cheese.. Definitely on the no list for the past year. Diet seems to really affect my symptoms so leaping back into normal-ish eating seems crazy. Perhaps at a certain point, you have to let your body lead the show...
It's just so difficult to never have the right answer or to be able to have the assurance you crave... about anything.

Post Edited (Shelleyk) : 12/12/2012 3:24:29 PM (GMT-7)

Hi Sarah, do you have an update? I am struggling and would love any advice you can send my way. Did you take antibiotics for the course of your pregnancy? My LLMD says this is what I have to do and I really don't want to believe it. Andrea

This is such a great thread - I'm bumping in case others would like to chime in.

Unfortunately, I've had setback after setback for the past 5 yrs and a relationship that ended (in part because of my lyme-induced complete change in personality and aversion to being with someone, sadly). I'm now 45 and just starting treatment. I've spent the past two weeks devastated with the fear that an already iffy chance at having my own child just got wiped out - and trying to get through these difficult initial treatment stages without completely losing it.

Reading this thread has helped soothe some anxiety - if for no other reason than to remind myself that I am not alone.

;)

-p

Post Edited (Pirouette) : 3/30/2014 9:26:02 PM (GMT-6)

I had a very healthy 8lb 5oz baby boy while being treated for Lyme. His cord blood tested negative and of course I did not breast feed him. I was on birth control so he was a total surprise. He is doing very well and is now 2. My daughter is 4 and I passed Lyme to her because I did not know it when I was pregnant with her. Good luck to you!

I know a LLMD who is pregnant right now, she doing two antibiotics throughout the pregnancy and started tx before she got pregnant. It wasn't a planned pregnancy she had the copper T.

I was at a round table and the presenting docs say 50/50 chance without treatmet, 25% chance with single antibiotic therapy and in studies there has been 0% transition so far with double antibiotic therapy throughout pregnancies. I had 6 children prior to my dx, I had been infected as a kid.... So my 11 yr old just started tx and my 13 yr old is in the beginning of testing etc.. We are working te kids in slowly with the LLMD.

I *think* I was infected in 2010 and got pregnant with my youngest daughter in 2011. At 6 weeks I had some spotting which my OB assumed could have been for a vaginal infection. She prescribed me flagyl, and almost immediately after taking the meds I felt like I was hit by a train!

At 8 weeks I had "the worst flu of my life" which my OB blamed of pregnancy. I was in bed with 102F for 10 days!!!

When I went for my anatomy scan (20 weeks) they told me they were sending me to a specialist because baby was 2 weeks behind growth wise and she had echogenic bowel.

After seeing the specialist weekly baby dropped from 17% to 3%, so they knew there was a reason she wasn't growing but didn't know why. They preformed a TORCH screen and I was both IGM and IGG positive for CMV... Which can cause stillbirth and many other birth defects. I was prepared to lose my baby.

I went to the specialist 3x a week, I practically lived in the hospital. At 30 weeks I mentioned that I wasn't feeling well and my kids had fifths disease. She got quiet and sent my to the lab. My test came back positive (IGM and IGG) even though my mom is certain that I had it when I was a child. Of course fifths disease is another one of those things that are only a big deal when you're pregnant. It can also cause stillbirth, and other birth defects.

I was admitted to L&D so that they could constantly keep an eye on the baby, plus my amniotic fluid would only stay in normal range if I was hooked up to an IV. I got steroid shots for her lungs and just prayed everyday that she would make it through this.

At 34 weeks she failed her BPP so I was rushed to have an emergency c-section. Maycie was born weighing 3lbs 9oz and 17 inches long. She was perfect!!!!

We stayed in the NICU for 8 days, which is amazing considering the original plan was at least 5 weeks! She didn't have anything wrong with her, she was just tiny. We went home illegally in a car seat with a 4lbs minimum, I don't think they make they smaller than that lol

Today she is 20 months and amazingly smart! So I've concluded that all the problems during my pregnancy were a result of my body going through chronic infection and not "growing her" like it should have. She wasn't getting what she needed because my body was just shutting down. And I'm 99% sure that the positive test (CMV & B19) were a result of my comprised immune system.

I wasn't diagnosed until she was 6 months old. My health is still a complete disaster but I thank god every day that it me instead of her.

I would really appreciate if you could email and ask her for me. If I don't get on the right antibiotics I'm so scared of having another sick baby:(I can't go through that again. Thank you