Lea's Story

Lea emailed me about a week before I gave birth. I was so unbelievably nervous about the events that were about to take place, and I was terrified that I was about to become an example of a horror story. Up until Lea emailed me, I'd received a lot of encouragement, support, and a bunch of questions, but I hadn't actually heard from a new mom who was feeling pretty good after delivery. Lea was a blessing. Her email was short, and to be honest, quite unexpected--she just wanted to tell me that she'd recently gone through the pregnancy experience after having chronic Lyme and she thought she'd let me know that all went well for her and her daughter. Most importantly, her little girl was healthy and "awesome." Hearing her success story gave me hope, and I hope it does the same for you. Here it is, in a nutshell:

I contracted Lyme and Babesia while camping in Utah in the Spring of 2008. I knew immediately something was wrong, but it took six months before I found out what was wrong with me. A week after returning home from camping, the right side of my body became numb and tingly. I was having hot flashes, vertigo, and nausea. I went to the doctor who said he was suspecting that I had Multiple Sclerosis. I saw specialist after specialist, who all concluded that my symptoms were “all in my head.” Luckily, I researched all of my symptoms, and found an LLMD.

I treated Lyme and Babesia for over a year until I felt I was about 90% well. We spoke to my LLMD who said I could start trying to get pregnant. I was still taking medications that were unsuitable for pregnancy when I found out I was pregnant in September of 2009. I was still experiencing numbness in my limbs and face and vertigo when I became pregnant. I had horrible morning sickness and a very rough first trimester. After that, I still experienced symptoms, but to a much lesser degree. About two weeks before I delieverd I experienced a surge in symptoms, and my LLMD upped my medication. I was on Omnicef 900 mg and Zithromax 500mg, and then switched to 900 mg of Omnicef after I delivered. I also received two shots of Rocephin while in the hospital. Surprisingly, my OB/Gyn and all the doctors I encountered either were interested in Lyme or didn’t really care. I didn’t encounter any difficulties, and was referred to a high risk specialist to monitor my pregnancy (which just meant that I got really cool pictures of my babe in utero!).

My delivery was great. I chose to deliver without any medication because I am terrified of anything in my spinal cord, especially after experiencing numbness in my extremities! My water broke naturally and my labor progressed normally. I delivered my daughter vaginally and did not encounter and difficulties. Recovery was as easy as it could be! The hardest part of recovery was the first three months of my daughter’s life due to lack of sleep and little help.

My daughter has tested negative for Lyme, but I still worry. I think that is the hardest part about being a mom with Lyme. I worry everyday that I may have passed this to her. My LLMD and I decided that since I was doing so well during pregnancy and had few symptoms, that I could breastfeed. I felt the benefits outweighed the risks, but I don’t know what I would have chose if I was really symptomatic before I delivered. My daughter has met all her milestones on time and is a very alert child. She is pretty awesome!

Right now, I feel pretty good. I still get episodes of vertigo occasionally, but it is manageable. I am still on Omnicef twice a day, and I take fish oil and probiotics. I feel worse when I am really run down, but I somehow make it! Overall, even though it was scary, having a baby was the best decision I have ever made in my life! I truly can’t imagine my life without her.


Thanks for sharing, Lea, and congratulations on a beautiful, healthy girl!

Calling All Mamas: Let's Get Wiser

Over the past year this blog has allowed me to talk to some of the strongest, most amazing women from all over the world. All of them have had a tough Lyme journey, and all of them were either pregnant, already mothers, or considering having children but were afraid of the disease.

I've thought for a long time opening up this blog so that others can share their experiences. I think I'm finally ready to take the first step, and starting tomorrow, I will be accepting guest stories. I'll also start interviewing some Lyme mamas, because I think there is a lot of information out there from which we can all benefit.

I am not completely naive, and I do realize that there are some terrible, heartbreaking stories out there, but the one thing I really like about this blog is that it is optimistic and, for the most part, it focuses on the positive aspects of motherhood. I am not at all against discussing hardships. In fact, please share them--we'd love to know what to expect-- but while you're being honest about your experiences, I hope you will focus on how you manage to get through the rough patches.

There are success stories out there. Granted, your definition of success might mean "We're getting by one day at a time without any major catastrophes," and that's just fine.

If you'd like to share your pregnancy, birth, or motherhood experience, ask a question, or if you'd let me ask you some questions (via email so you can respond at your convenience), please contact me: lymepregnancy@gmail.com

Let's share what we've learned so far and help each other, because lord knows most people in the medical field have dropped the ball on this subject.

Hired Help for Moms with Lyme

Just a quick update on the help situation:

We found a young lady on Craigslist to help me around the house two days a week. It's only for one or two hours a day, as most of our money goes toward Lyme treatment, cans of formula, and covering the little guy's bum, but oh my lord, let me tell you, if you can spare a little bit of money each week, even two or three hours are SO WORTH IT. After exploring a bunch of different options, I was surprised when the best fit for our family was a high school student whose services cost $30 a week at most. I truly consider her a blessing and would give her more if I had it.

And if I had known that my first "mother's helper" experience would be so phenomenal, I would have started this three months ago when Wyatt was born.

Today I took a shower. A really long one. But before I jumped in the tub, I listened for a bit at the door to see how she interacted with my son alone. There was a lot of singing and story reading and playing, and you wouldn't believe how much that kid laughed. She praised him, nurtured him, and gave him 100% of her attention.

I now have time to nap, do some light cleaning if I have the energy, pay bills, return emails, and did I mention take a nap?
When I came downstairs after my shower, all of the bottles were washed and my house was straightened up. Wyatt was peacefully napping as our helper watched over him.

I'm usually not one to get overly sentimental, but it brought a tear to my eye when I saw them together and I realized that he can interact at home with someone who has a lot of happiness and energy to offer. Sometimes I feel as though I'm only half present when I'm caring for my son... I smile and play with him, but I'm often focused on being exhausted or in pain, or I'm worrying about the million other things I think need to get done but don't have the energy to do. I think babies pick up on that.

Seriously, if you can swing it, find some help (it doesn't have to be paid help either). It makes everyone a little happier.

Help Revisited

I’m not gonna lie: I’m feeling some guilt over not posting as often as I’d like, but to say that I don’t have time because I’m exhausted is a gross understatement.

That’s not necessarily a bad thing if you have the right mindset--the work of motherhood is rewarding, and most importantly, it forces you to get out of your own head, challenge yourself physically, and survive as best you can in the “healthy” world--because, let’s face it, that baby is not going to slow down or stay quiet just because you’re having a bad Lyme day. Parenthood shows you that there is life outside of Lyme.

Help. That’s the magic word. You will need it, and there’s no shame in asking for it. If someone offers it to you, assume they mean it, and take it. If I could have done one thing differently during pregnancy, I would have made a Help List way in advance.

Even when fully healthy people have a baby, it’s pretty standard to have family come and assist with daily stuff like meal prep, cleaning, and some baby care, especially when there’s more than one kid in the house. I’ve yet to hear of a family that didn’t welcome an extra hand. Usually after a couple of weeks, you’ve adjusted and are on your own again.

But when you have Lyme, multiply that need for help by a few months. This might not be the case for everyone, and I hope it isn’t, but expect the worst and hope for the best.

Wyatt is over three months old, and just yesterday, I was so exhausted that I had to stay in bed all day. It only happens once in a while, but when it does, I’d be in some serious trouble if I didn’t have help to call on.

Luckily, people love babies. Especially people whose children are all grown up now--they love reliving the experience of rocking and snuggling an infant. Before you even have your baby, make a list of people who would love to rock and snuggle yours. Let them know in advance that you anticipate some “down” days from time to time and that you would love to add them to your list of people to call on.

Based on a few recent experiences, I have to add that you’ll want to choose people who can get right in there without waiting for direction, especially during your first couple of weeks home from the hospital. Of course, if you’re not shy about rattling off a list of things you want done around your house, you’ll have no problems. I feel uncomfortable giving orders, so I prefer people who can come in and just do what needs to be done.

For example, my mother is an angel. If I leave Wyatt with her while I nap, I wake up to find the little guy bathed, fed, and happy. She also finds time during my nap to vacuum, wash dishes and bottles, do laundry, and once she even mopped my floor because, “it was really sticky and gross.” She saves me so much time and energy that I usually don’t have to spare in the first place.

In the end, I came up with a small list of people I can call on in emergency situations (i.e. days I’m so tired I literally can’t do anything).

On Mondays and Tuesdays my husband is off, so he can pick up the slack.
On Wednesdays and Thursdays, I have a stay-at-home neighbor on call in case I need help or I need to walk the dog. On weekends, my parents are overly happy to help out. I’m not ashamed to admit that my husband and I will bring the baby over to my parents’ house and have my mom take Wyatt for a night or two while we catch up on sleep. (My husband works 14 hours a day on his feet, so he has his fair share of fatigue as well.) Of course, we wouldn’t just dump the baby on her--we stay at the house, too, and help out. My mom also knows that she can be honest if we’ve overstayed our welcome. Lucky for us, she loves taking care of her grandbaby.

Even with the help of friends and family, I’m looking for a mother’s helper to call on when necessary--a young person who’s looking for an after-school job for a couple hours a week. To me, it’s worth the forty bucks or so a week to have an extra set of hands around the house. In reality, what it comes down to is that I will gladly pay for sleep. Sleep is crucial.

So here’s your homework assignment: Make your Help List in advance. Have as many people as you can as backup, because the suckiest feeling in the world is scrambling to find someone to come over when you’re having a bad Lyme day. Even suckier is when your brain is so foggy you can’t even think of your friends’ names! Okay, a bit extreme, but you know what I mean...

*Note: There are plenty of people looking for childcare jobs on Craigslist and your local newspaper. We found a great candidate for us and will be interviewing her this week. I also like to browse http://www.care.com/ because you can see pictures and pre-screen the applicants.

On A Lighter Note...

HAPPY HALLOWEEN EVERYONE!

One More Look At Breastfeeding

If you’re like me, you want all of your pregnancy decisions to be no brainers. Our treatment courses are so individualized as it is, and we’re often confused and not sure if we’re improving, declining, or doomed to live forever in the purgatory better known as, “I’m able to function, but I feel like crap all the time.” Choices become even harder when we factor in the future of a developing baby.

That said, I don’t mean to further confuse you with the following breastfeeding update:

My intent for this blog is to provide as much Lyme pregnancy info as I can, and I understand that just because something works for me, doesn’t mean it will work for others.

I’ve posted a couple of times on breastfeeding, and in the end, I made my own list of pros and cons and decided against it. My LLMD agreed and encouraged formula feeding. For those of you not interested in formula, I have some interesting news:

I recently received and email from my friend and fellow pregnant Lymie. She spoke with her LLMD about breastfeeding, and her doctor highly encouraged it. She is going to give it a try, and I think that’s great news! (Just goes to show you that LLMDs’ opinions differ greatly.) According to her doctor, “there is no evidence of passing lyme through breast milk. However, even if there are bacteria in the breast milk, it may be digested by the stomach acid. Also, if you take antibiotics while breastfeeding, you pass on the antibiotic protection to the baby.”
I don’t know why I never thought about it from that angle, but it makes sense...in the off chance some spirochetes make their way into the milk, it would be nearly impossible to survive our harsh stomach acid. Much different than passing it through the blood.

She also told me that she plans on getting her breastmilk tested. Until now, I had no idea that this was an option, though it seems obvious and I wonder why I didn’t think of it while I was pregnant. (As soon as I get more details on the testing, I will post them.)

As I watch my own son struggle with formula (it took us the better part of three months to find a formula that didn’t bother his sensitive tummy), I sometimes wonder if I should have taken the chance and gone the natural route.
(The “what-if” mentality will do nothing but drive you nuts, btw.)

I should point out that even though she still experiences some symptoms, my friend is mobile and on the mend, and therefore isn’t anticipating any aggressive not-safe-for-baby treatments after delivery. This makes breastfeeding a viable option.

She also mentioned that she plans on pumping. She’s doing it for personal reasons that are not Lyme related, but I’d like to add that it’s a fantastic way to give your baby the good stuff, yet till have the freedom to take a nap and let your partner take over if you’re not feeling well. (Trust me, there will be days where you’ll need extra sleep.)

Again, I’ll stick with what I’ve believed since the beginning: I don’t think there is a right or wrong answer to any of this, because we just don’t know enough about the disease yet.

We do the best we can, and we do what feels right. No matter the decision, these babies will be well loved and cared for.

Thank you, L, for sharing this information with us. Please update us and let us know how it goes for you. *Stay tuned for info on breastmilk testing.

Test Results Are In

I tend to write in retrospect, because often times I have to work through difficult times before I can share experiences publicly. This is solely for the purpose of not sounding whiny to readers. Some weeks are just shitty, plain and simple. In time, solutions present themselves, and I like to be able to report positive outcomes if at all possible.

That in mind, I’m happy to report that Wyatt’s cord blood test results came back negative! Not a single trace of Lyme!

Yes, I’m sharing this 9 whole weeks after his birth. A failure in communication delayed the results--(it’ SO important to keep on top of all your doctors). I was told that no news was good news, so we went along thinking all was fine with the test results. Then I learned at my 7 weeks OBGYN checkup that the results never came in.

That sent me into a brief panic (OMG, what if he actually has Lyme and two months have already gone by!). After a lot of back and forth with IGeneX and the doctors, we got it all cleared up.

Three things to know:

Your OBGYN will have to sign a release form that IGeneX faxes over after they receive the blood sample to ensure that the test results are going to a “secure location,” whatever that means. Make sure the OBGYN office knows that this isn’t a junk fax (that’s where we ran into problems, as we think the forms were accidentally thrown away).

Once IGeneX receives the blood samples, it takes only 7-10 days to get results. If you haven’t heard anything by then, follow up. They’re super nice and helpful when you call.

3. If your LLMD agrees to look them over, have your baby’s results faxed to him or her as well. In the end, it was my LLMD who delivered the results, because I felt he was the only one qualified to read them properly. Note: I don’t know how the results are presented, as I haven’t seen them on paper. They could just be a simple positive or negative, in which case, your OBGYN could also share the results. I just remember looking over my initial Lyme test results two years ago and asking my LLMD to explain them because I has no idea what any of it meant. I just assume cord blood is presented the same way?

Above all, I just want you to know how helpful this cord blood test was for piece of mind. Of course, all Lyme tests can be unreliable, but an initial 100% negative reading took a huge weight off of our shoulders. TOTALLY worth it to have the cord blood sent in. If in twenty or so years we find that the whole congenital Lyme transmission thing is actually bogus like many doctors say, in the end we lost out on $250 bucks. I’d pay that once a month to be able to sleep soundly at night.

Speaking of sleeping soundly, holy crap--rest up mamas! Babies don’t care if you’re symptomatic or exhausted. I fantasize about the days when my biggest complaint was getting up a lot to pee! Good thing the frustration fades when they smile that gummy smile at you.