Sunday, December 26, 2010
I am a miscarriage magnet. In the past five years I’ve had five; most ended super early and they vacated on their own, but the last was a set of twins that stuck around a while before I needed a D&C, and I was quite attached to them. OK, that’s an understatement. My world was turned completely upside down for a good while, and the only way I was completely able to move on is when I conceived again and carried a baby to term.
Whether it’s right or wrong, I don’t think much now about the babies I lost. That wasn’t always the case, but when I was finally given the gift of a healthy baby, I felt that the fulfillment I got from being his mother was plenty enough for me, and I’ve been content ever since I had him.
Sometimes in my thoughts I can reduce the miscarriages all the way down to simple balls of cells with chromosomal abnormalities--defects of nature--and that my grief over the losses was based solely on my own disappointment (I soooo wanted to be a mom and I had my hopes up for nothing). Sometimes it’s not that easy. Or other times, if I’m feeling “cosmic”, I view them as souls that weren’t ready to sign on for the specific life my husband and I would have provided. I even recall my husband saying, “It must have changed its mind-- it signed up for the job but then it read our file and was like oh hellll no, these people are nuts! But it’s OK--someday we’ll get a tougher one who can handle us, and that one is meant for us when it’s ready.”
Regardless of how normal or abnormal my husband’s and my coping mechanisms are, I feel like there is one miscarriage thought most of us Lymies have in common, and that is the heart-dropping-to-your-gut feeling when you discover you’re miscarrying and you immediately curse your body for failing (yet again).
I think it’s a given now, even to the skeptical doctors, that Lyme and Co. can cause miscarriages and fetal abnormalities. We see this a lot in women that didn’t know they had Lyme and had trouble conceiving and/or carrying... it seems to click with them once they finally get a diagnosis: “My whole system is shot and infested with bacteria--no wonder I couldn’t carry a baby.” And that’s when the guilt, anxiety, disappointment, depression, or whatever you want to call it sets in, and what all of those words really mean is, “Lyme is ruining my life, my partner’s life, and now it just ruined my baby’s.”
For the most part, these miscarriages happen very early on--(though I’m sure people would be quick to report some rare exceptions), and the further along you are in treatment, the better your chances of a successful pregnancy. Of course, this is why the doctors stress pregnancy-safe antibiotics ASAP. Some (not all) will even treat your pregnancy as high-risk and will take extra precautions to make sure your baby’s growth is monitored from the beginning.
Some might disagree, but I feel like many of us are quick to blame all miscarriages on Lyme Disease, much like every ache and pain some of us experience is attributed to the disease as well. Is it ever possible to just have a bad headache without it being a cranial nerve flare-up? Could the bloated painful belly be due to the fact that you ate a ton of ice-cream and you’re on dairy overload? Can a miscarriage just be a miscarriage? Sure it can. After all, early miscarriages happen so often in all types of women, Lyme ridden or not (according to the American Pregnancy Association, there’s a 15-20% chance in healthy women). But unless the fetus is tested for spirochetes, there’s no way of telling for sure.
I have to admit that I’m incredibly afraid of a miscarriage right now, just based on past experience.
Does this have to have a bad outcome? Probably not. My hormone levels are rising as they should, I’ve already started getting morning sickness, and I’m cranky as hell. I mean, reallly cranky. Plus, I’m bloated beyond belief, my boobs are huge and they hurt like a mofo, and toothpaste is still disgusting. To me, that indicates all systems go.
But as you know, it’s hard. You want to get excited because this really is one of the most greatest experiences on the planet, but you’ve seen (or heard about) the outcome for many with our disease.
Lately I find myself superstitious when I normally pretty level-headed. For instance, I’ll tell myself that if I get rid of my old maternity clothes, this pregnancy will stick due to Murphy’s Law. I can’t even start thinking of names yet, unless I consider “NewBaby” a name, because that will surely lead to another miscarriage, and it sucks mourning something you’ve already named. I’m already expecting dooms day to happen because I’ve shared all of this info with you before the recommended 12 weeks! (Trust me, I struggled over when to post about the pregnancy but figured I’d tell you all if I miscarried after the fact, so I might as well include you on the pregnancy journey as it unfolds.)
I’m scared, as I know many of you are, because a lot of you have experienced the same kind of loss before.
But you know there is always a hint of hope in these posts:
If we let our fears about the past stop us, we will never have children to love. Quite frankly, I can’t imagine life without my son, and each of those miscarriages was worth it to get him in the end. Will it be 12+ weeks of self-inflicted torture in the beginning (OMG I haven’t felt like puking for over an hour!--am I still pregnant?!?!)? Most definitely, and if you have a cure for that, please share.
For now, I will sit here and eagerly await the first ultrasound (January 4th), blowing things out of proportion, and then talking myself down to a more optimistic, rational state. Seriously, if you’re scared of Lyme pregnancy, you’re not the only one. We have a lot at stake here, because our health is so unreliable and we are conditioned now to expect the worst. But life only happens when we give it a chance to, right? I guess I’d rather take the risk and be nervous about a miscarriage than regret the time I spent wondering what could have been. My fingers are crossed for all of you in the same boat right now.
And hey, Lyme moms: please share how you’ve gotten through this anxious time in the past. Also, if you’re a nervous, newly pregnant Lymie, go ahead and express your fears here if you like. Knowing that we’re not alone in this is comforting.
*Note: I’d like to share statistics and studies about miscarriage occurrences in Lyme patients, but honestly, whenever I research these findings I just get pissed off. There’s so much conflicting info out there, and I refuse to be part of the group of Lymie fear mongers on a mission to prove that Lyme is going to kill your fetus before you’ve even thought of conceiving it. Most of these studies were done on mice anyway, and I’m not comfortable believing any test that’s not based on humans.
Saturday, December 25, 2010
Just two weeks ago I had a hard time deciding what to do with this blog. Wyatt is now 5 months old, I barely have time to write as much as I want to, and as much as I’d love to devote all of my free time to Lyme pregnancy research, I just don’t have it to spare.
I entertained idea of starting a Lyme parenting blog (which I will do eventually). Then I told myself to stop whining and write two blogs--one for pregnancy and one for parenting. And then I finally got frustrated enough to say that maybe it’s run its course, it’s time for this journal to end.
And then something weird happened. One morning last week I made my usual egg-whites for breakfast. They tasted off, and by the time I was 3/4 finished I was ready to hurl. I had to spit out my last bite. Nothing like bad eggs first thing in the morning, right?
The next day my husband lumbered down the stairs and grumbled good morning after soothing a cranky teething baby all night. I don’t even think he opened his mouth wide enough for real words to come out, but I could smell from across the room that he’s just brushed his teeth. Mint. Gross. Gross? Gross mint and and an overwhelming wave of nausea?!
Ohhhh, this was way too familiar.
Between the Lyme symptoms and caring for an infant, I can count the number of times I’ve had sex on...well...I’m actually too ashamed to finish that sentence, because it’s so lame. But all it takes is one time, right?
I ran to the dollar store and bought 7 pregnancy tests because I’m weird like that (whatever--they’re a dollar). I peed on four of them. Guess how many came out positive? Oh yeah.
Remember that part in the movie Juno when Ellen Page pees on the stick and shakes it and the guy tells her it’s not an etch-a-sketch and you can’t erase it (or something to that measure)? That was me.
And then it hit me: Holy crap. I’m pregnant! YESSSS!!
And then it hit me again: Oh God, I’m pregnant. I’m still fat, sick, and exhausted from the first one! I’m officially ruined...
Back to, YES! Maybe it will be a girl this time!
For hours I experienced an emotional spectrum ranging from blissful elation, all the way to sheer panic and fear, and quite honestly, some quick moments of dread. In the end, elation won, but I do realize that I will be viewed as insane by most of the community.
And so my question regarding what to do with this blog resolved itself.
I’m friggin’ pregnant.
So here I am, (happily) signing on for another nine months of experience and research, all of which I will share with you lovely Lymies.
Now that I know what I’m dealing with this time around, I hope to enjoy this pregnancy more (as much as one can enjoy pregnancy, anyway), and I will use this opportunity to grill every doctor I come in contact with for useful information for all of us.
Merry Christmas, everyone. Hope your holiday season was filled with good surprises too!
Monday, December 20, 2010
If you like snail mail and you're tired of only finding past due medical bills in your mailbox, then this post is for you.
I love that we're becoming such a great community here, and the support we all give each other is much appreciated.
If you'd like to continue the warm fuzzies and get on the LPJ holiday card mailing list, Wyatt would be thrilled to send your family a very special season's greeting.
Just email your name and address to email@example.com and we'll get one out to you.
Don't worry, your information is top secret and will never be shared with anyone.
Thank you all for reading! Hope you're feeling great and are enjoying the holiday season.
-Sara, Mike, and Wyatt
Sunday, December 12, 2010
Just a note to say I'm still here, and holy crap, I have a lot to say. Between reader stories, testing instructions, personal updates, and a few surprises, the majority of my day is spent thinking about how much I have to catch up here.
I'll start back up again shortly--I'm usually not this pokey, but I really had NO idea a four-month-old could require so much energy! For the record, I'm typing this one-handed because I have an over-tired baby in my arms, there's a puddle of spit-up in my lap, and you don't even want to know what time I woke up this morning.
All is well and we're making progress. Please stay tuned for the latest adventures in Lyme Pregnancy. I promise, it will be worth the wait.
Monday, November 15, 2010
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!
Sunday, November 14, 2010
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: firstname.lastname@example.org
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.
Thursday, November 11, 2010
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.
Thursday, November 4, 2010
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.
Thursday, October 28, 2010
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.
Monday, September 27, 2010
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.
Tuesday, August 31, 2010
A while back I posted my initial thoughts on breastfeeding based on my doctor’s recommendations. During a time when many women and doctors are militant and sometimes downright mean about the importance of breastfeeding, I had to work hard to get past the embarrassment and guilt over my choosing to go straight for the can of powder mix. By the time pregnancy was over and I’d weighed my options a million times, I was totally fine with my decision to have a formula fed baby.
Wyatt did fine with Similac in the hospital. The nurses were surprisingly supportive and were happy to feed him during the night so I could sleep. When the subject of breastfeeding came up with any of them, they were quick to tell me the formula was just fine and that I had a medical condition that prevented me from being able to feed him any other way. At first I was impressed by such forward thinking. Maybe doctors and nurses were finally entertaining the idea that spirochetes can transfer through breast milk? Not so much. In fact, I recommend not even discussing milk transmission unless you have to or if you want to be told that your Lyme information in severely outdated.
I soon found out that they were commenting on my upcoming medication switch, which was deemed necessary because my symptoms were so bad. I was so caught up in spirochete transmission through breast milk, I didn’t even consider that I wouldn’t be able to breast feed, because all of the medications that actually work for me wouldn’t work for baby. Something to keep in mind, especially if you have a bunch of allergies and your antibiotic/supplement options are limited: Breastfeeding might not be an option at all, even if you want it to be.
Fast forward to my first week at home. I hadn’t started any not-safe-for-baby meds yet, because I was terrified of a herx on top of C-section pain. Formula feeding was going very well, but my baby blues had started to kick in, and weird things were happening to me emotionally. Mostly, I’d get weepy at feeding time. It had nothing to do with Lyme. Nothing to do with the icky chemical ingredients I read on the back of the formula can. It was purely natural, instinctual, kind of like an animal-- Wyatt would cry for food and I yearned to breastfeed. Like I HAD to. My boobs actually hurt as he sucked on his bottle, and it broke my heart that I had all of this milk to give him, and I felt so unfulfilled measuring out the powder instead.
So I said screw it. I’m going to breastfeed him. The chance of transmission is so rare, and I’m learning more and more that I’ve been panicking for no reason, though I’d have to put off taking different, stronger doses of antibiotics. I talked to the pediatrician, who loved the idea, but I admit that I didn’t tell my LLMD because I’d get an earful. (Sometimes I choose to follow my strong instincts and not the advice of the doctor.)
I spent an hour in a hot shower massaging my breasts, trying to get the milk to come back. I thought I’d lost it, because it had been so long they didn’t even hurt any more. But eventually it came back, and I happily prepared myself for the glorious bonding experience I’d envisioned.
Wow. What a letdown.
Granted, I know breastfeeding takes practice and things would have gone better if I’d learned in the hospital and gave it time, but it was painful, and it was awkward for both of us. Wyatt latched on fine, but I swear, he didn’t like it. He fussed for a long time and then opened one eye up at me, as if to say, “WTF Mom?!”
That pressing need to breastfeed vanished as quickly as it came, and Wyatt was as happy as a clam when I gave him a bottle instead. As if to reassure me that I’d made the right choice, I had a bad symptom night that same evening and knew it was time to start taking my meds. (For the record, I’m feeling awesome now on Minocycline, which is not baby safe.)
Obviously, I can only comment on my own experience. You might try breastfeeding, do well with it, and love it. I just wanted to let you know that if you’re having guilty feelings about choosing not to breast feed (or if you’re unable due to meds), my feeling is that even though it’s the favored choice for babies, it’s not all it’s cracked up to be.
As for the idea that mother and child bond better when they breastfeed? I disagree. I’ve experienced intense bonding moments while feeding my guy his formula. We have a routine now, I’m understanding his needs, and he’s a very happy baby.
Overall, life is good. I’m happy I tried breast feeding because the need/curiosity would have driven me completely nuts, but I stand by my original decision to play it safe and stick with the bottle. Just do what works best for you and your family and follow your instincts.
Photo from Babble.com
Thursday, August 26, 2010
After writing about the physical concerns of Lyme pregnancy and recovery after birth, I stopped and asked myself what the hardest part of this whole process has been. I was surprised that it had little to do with the physical aspects.
Maybe I’m the only moody, neurotic mess, and other mothers cope well with the stress and worries that come with a chronic condition. I have a feeling that’s not the case, or else you wouldn’t be searching for pregnancy information or even reading this blog for that matter. The idea of becoming pregnant after a long, hard battle with treatment can drive you crazy!
From day one, I was prepared for being physically uncomfortable. Hey, pain is nothing new, right? Chances are, if you’re considering getting pregnant or you are engaging in activities that will get you pregnant, you’re feeling decent. At the very least, you’ve had times in your not too distant past where you were much much sicker.
I’m not a doctor, but I can pretty much guarantee that pregnancy will have its ups and downs, but is not going to set you back to day one--that awful time right before you were diagnosed and at your wit’s end.
That said, I was completely ill equipped to handle my emotions both during and after pregnancy. My original fears about being a sick mom who was often times dependent on others for help came true in a hurry.
When I’m having a sick day, does dragging the Pack and Play over to the couch and caring for my baby while lying down make me a bad mom? How about having my husband work an insanely long day only to come home and take care of the baby during the night because I need extra sleep? No, it doesn’t, but the guilt and feelings of inadequacy over not being able to pull my weight eat away at me.
I want to be the mom I’ve always envisioned. The mom that’s always on top of things and brings her baby out all the time to explore the world. The mom that breast feeds. The mom that dances with baby in the living room and rocks her fussy little one back to sleep in the early hours of the morning. Unfortunately, a more realistic description right now is the mom that begs her kid to stop screaming for a minute because her migraine is so bad she can’t focus.
I don’t imagine any of this will be permanent, and as he gets older I will get healthier and stronger. Just be prepared because the first month or so might seem pretty bleak as you learn by trial and error what you’re capable of and what is unrealistic.
I try to keep in mind that a baby has no clue you feel like crap. He will never remember that your house was a mess or know the difference between a solid hour of active play time or a quiet cuddle on the couch. And contrary to what Babies ‘R Us tells us, babies need very few things. They need food, sleep, diaper changes, and they to be loved, held, and kept warm.
We don’t use half of the crap we bought for Wyatt, and out of all of the rattles and little toys we received, he prefers to stare at the little man on a canister of Quaker Oats. Go figure.
It really is a simple life if we can train ourselves to see it that way, and parenthood is completely manageable if we keep the right mindset. The hard part is not giving in to the sadness and frustration that occurs on days when we just can't get into gear. All I can say is try to be easy on yourself. You'll end up doing what you can, and that will be enough.
Monday, August 23, 2010
I gave myself a month to test the waters before writing this. I didn’t want to get too excited if I felt great after delivery, because we all know how unpredictable this disease can be. I also didn’t want to scare the crap out of anyone if I complained that I felt like death the first few weeks. No surprise here--it’s been a mix of both good and bad.
The first three weeks after delivery I felt pretty damn good. The sudden loss of at least ten pounds (I still refuse to weigh myself) helped my mobility tremendously (even after a C- section). I could breathe better, I didn’t waddle, and all the swelling subsided a bit. With less stress on my body, my Lyme symptoms diminished greatly, and for a lovely few weeks, we were a normal family--beaming and happy, yet entirely exhausted and zombie-like from lack of sleep. That was fine, because it seemed “normal” to me. No one sleeps the first couple of months!
Well, that mentality is what got me into a bit of trouble.
We were lucky enough to have help the first couple of weeks. My mother came to stay with us for week one, and my mother-in-law took the second week shift. My husband had to go back to work right away, so the help was truly necessary. I would take care of the baby during the day, and my husband and family would take turns doing the night shifts so I could sleep and recover from surgery.
Regardless of the night sleep, I was still exhausted. But I felt as though I was doing a good job being a mom, so when the help had to leave, I took on the night shifts every other day to help out my husband, who works hard in a hot kitchen for 13+ hours a day.
Since then, my health has declined. Even after eight hours of sleep on my “off duty” nights, I feel like I haven’t slept in days. The nerve pain and twitching came back, and there were a couple of days where I couldn’t keep up with household stuff, and I spent the day curled up on the couch with the Pack and Play set up next to me so I could easily hold, change, and feed the baby when necessary. That said, so far, even my worst days aren’t as bad as my final weeks of pregnancy, so I consider this a major improvement.
My new life hasn’t been overwhelming to the point where I can’t handle it, though I admit there have been a few sob-filled “Come hoooome, I can’t dooooo thiiiiis!” phone calls to the husband if the baby is extra fussy on one of my sick days.
I’m not going to lie. This is hard. You have a baby, and all of a sudden it’s not all about you anymore. Feeling terrible? Too bad--your baby needs you, and you can’t just pull the covers over your head for the day and sleep the pain away.
It definitely takes some getting used to, and I have the feeling my LLMD would want to kick me if I told him that I’m compromising my health by overdoing it, but I can honestly say that I am amazed at the strength I find in motherhood. I’ll even say that being a mom is helping in my recovery.
A month ago I was a lump on the couch. If I didn’t feel well, I could zone out to bad T.V., let the dishes pile up, feel sorry for myself and essentially “give up” for the day.
Yes, this is the world’s biggest cliche, but it’s true: I have a purpose now, and I have a full time job without the option of quitting. (FYI, a baby is even more demanding than the worst boss you’ve ever had.)
Now I’m out and about buying baby supplies. I “exercise” by holding 8+ pounds all day, walking the little guy around the house, and taking out the craptastic garbage bags full of diapers. I have to be upright--there are bottles to wash and make, there’s baby laundry to do and fold, “accidents” to clean up. There’s no time to let aches and pains stop you, and you end up just pushing right through it.
Personally, I feel like all of this pushing is a positive. I have a reason to get better, and my confidence grows each time I challenge myself to keep going and I prove that I can provide for my son.
I swear, once you give birth, you unlock this magical reserve of energy you didn’t know you had. I’m assuming the physical ups and downs will continue. In the meantime, I’ll continue my new drugs (back on all supplements, thyroid pills, and Minocycline for now) until I see my LLMD in two weeks to discuss the future. We’re also looking into hiring someone to help out for a few hours a day so I can get more rest in, but I’ll save all that for another post.
Sunday, August 8, 2010
1. It’s important to find a good OBGYN. And by good, I don’t necessarily mean Lyme literate. As long as he or she is Lyme “friendly,” (open to listening and learning about the disease), and are able to communicate with your LLMD, you’re in good shape. We went through three different doctors before we found a match for us.
2. Just because a doctor is Lyme literate, it doesn’t mean he or she will be a good fit for your family. I was lucky enough to find a Lyme literate OBGYN relatively close to home, which I’ve heard was impossible*. He turned out to be an evil monster and caused an immeasurable amount of stress and tears. Go with your gut instinct and stick with someone that makes you feel comfortable.
*LLOBGYN recommended by my LLMD. I’m not sure where else you’d go to find one.
3. There’s no need to panic. Yes, you have Lyme. Yes, it can be transmitted congenitally. No, your baby probably won’t get it if you’ve been treated in the past, and especially if you are being treated now. The internet can be a dangerous thing. The truth is, you’re not going to read many scientific based articles and statistics on Lyme pregnancy, because there simply aren’t many out there and it’s hard to weed through the junk to find good sources. Proper treatment is crucial, but pregnancy doesn’t have to mean automatic Lyme transmission.
4. Along the same line, many moms being treated for Lyme have healthy babies, but they aren’t online writing about how wonderful their lives are. Sadly, people write about health issues only when there are, well, issues. I’m in no way undermining those who have had to live with with congenital Lyme. It’s serious, it’s scary, and my heart hurts for those who have to care for sick babies. (I appreciate this even more now that I have my own baby, as I get upset when Wyatt has something as benign as diaper rash.) Just remember that there are more healthy Lyme pregnancies than you might think. We just don’t often hear the success stories.
5. Be optimistic, but expect the worst. Lyme symptoms suck. Pregnancy symptoms suck. You might experience both at once, and that is double suck. I’ve heard that some women’s Lyme symptoms disappear during pregnancy due to an increase in hormones. This wasn’t the case for me, but I hope it is for you! Just know that it might be uncomfortable, and downright tear inducing at times, but you will get through it. I would not lie to you, the second you see your baby for the first time, you won’t care about those past nine months. I wish I had more words to explain that beautiful moment. Bottom line is that it’s all worth it.
6. Don’t be afraid to say, “I can’t do it.” By the time I realized that I needed to throw in the towel, actually let my husband and family help around the house, and just submit to the T.V. or writing, or internet surfing, I was in my third trimester. And the only reason I settled down was because my feet swelled up to elephant man proportions, I was too big to really move around, and my tics set in big time. I have promised myself that when I’m pregnant again (yes, there will be another!) I will allow myself to take it EXTRA easy from day one.
7. Diet is important. I learned this by eating healthy foods in the beginning and then giving in to sugary cravings later on in pregnancy. When I was eating my super healthy Lyme friendly diet (no sugar, bread, or fruit), my symptoms were mild. When I indulged in my Pop Tart and Ring Ding cravings (gross I know--I don’t even normally like that stuff!) my health declined rapidly. Again, next pregnancy I will try hard to not give in to the sugar. I believe it makes all the difference.
8. Pregnancy = a nine month waiting period for hard treatment. Regardless of how crappy you’re feeling, most doctors will take the less is more approach when treating during pregnancy. This is for obvious reasons--there aren’t many pregnancy-safe drugs out there, and most people want to stay as chemical free as possible, as everything we take goes to the baby as well. Plus, doctors want to cover their butts. If anything happens to that baby during treatment, they don’t want to be blamed for it. The key word is maintenance during this period. After you have your baby, you can treat aggressively again.
9. You are your own advocate, and even more so, you are your baby’s. Don’t be afraid to call your doctor with any questions or concerns. At first I was timid and felt bad for bothering the office staff. After the first couple of months I realized that if I wanted any help or answers, I had to be assertive. Don’t be afraid to ask questions and demand answers if you’re not getting them. If you get resistance from anyone, switch doctors--there are countless others out there, and many are actually in the business to help.
10. It all goes by faster than you think. I swear. Before you know it, you’ll have a little one in your arms, and for a brief moment, you’ll be so happy that you won’t even remember Lyme exists.
Friday, July 30, 2010
As you can see, we went through with our decision to induce early, and when all was said was done, it was the best decision we could have made.
I learned a lot over these past eight days. There's a lot I want to share with the hope that you find it useful when it's your turn to deliver. The truth is, I'm having a hard time deciding where to start, so I apologize in advance if this is all a bit disorganized.
I guess I'll begin with the story, and once we have that down, my future posts will discuss certain areas in more detail.
Our plan was to have the amnio to test for lung maturity, return to the hospital that same evening to have my cervix ripened (is it just me, or does that sound gross?) with a little inserted tablet used to jump start stuff down below. In theory, the tablet softens the cervix and thins it out in preparation for a pitocin induced birth.
I'd sleep and let the tablet do its magical thing overnight, and they'd start the pitocin drip at 6am the next morning. Contractions would start within an hour or two, and we'd be on our way to Babytown.
I wish I could blame the next events on Lyme, but I can't. I feel like it's important to share this, though, because I was under the impression that labor would be so painful that all Lyme symptoms would take the backseat during childbirth, and I would only focus on the dominant pain.
Here's my disclaimer: Every labor is different, just like every case of Lyme is different. My Lyme is severely neurological and goes way beyond joint pain, mental fog and headaches. Therefore, some people with annoying but tolerable symptoms might actually avoid any bothersome symptoms while delivering. Please don't be scared off by this story, because I swear, not a single bit of pain matters once you hold that little baby for the first time. For the record, within twenty minutes of first meeting our son, I told my husband, "We're doing this all again next year right?" It was the most rewarding experience of my life.
So first off, I went into the delivery room at 6am as scheduled. To my dismay, the tablet didn't work. At all. This was a surprise to me, as I'd actually started having mild contractions about an hour after they inserted the tablet the previous night. I thought for sure I'd be at least three centimeters. So it goes...
As for Lyme symptoms, there was no significant increase, but the twitches were present as usual. I was running on pure adrenaline, so fatigue was not an issue.
They started the pitocin, and within thirty minutes I was having contractions that were two minutes apart. They were definitely stronger, and I swore I'd end up like my mom, who popped out babies like they were torpedoes. The nurse told me the contractions needed to get stronger and more consistent before the party really started. So we waited.
Fast forward six hours. They checked my progress. One freaking centimeter. ONE. I was discouraged, but I still had hope. The doctor broke my water in order to get things moving, because I was complaining that the contractions were starting to get really intense, and I wasn't allowed to have an epidural or block. My neuro symptoms began to worsen, and this surprised me. My twitches were more frequent, I had muscle fatigue, and numbness in my legs. I chalked it up to being tired, as my symptoms always flare up when my body has been under physical stress.
Here's where things get interesting:
When you're in labor, you're hooked up to two belts. One tracks the baby's heart rate, and the other records your contractions. I'd officially been in "real labor" (not counting the start of labor the previous night) for 11 hours. I was in screaming pain (though turns out, I'm not a screamer--I now know I prefer silence during labor) and the nurses kept telling me, "Just wait, it's going to get a whole lot worse," because the monitor was showing very mild, sporadic contractions.
I had been told that "Just when I felt I couldn't take it anymore" was when babies usually showed up. Well, I was nearing that point. Twitches and nerve pain had taken hold, on top of contractions that seemed like they were never ending.
I was also told that I couldn't be having contractions for long periods of time and that my constant pain was probably just the baby settling. The contraction monitor was showing "nothing significant," even though I begged to differ. Fortunately for me, the evening nurse shift was about to take over. My new, amazing nurse was concerned that I was in so much pain, and she ordered a new contraction monitor that measured things internally. Just so you know, it IS possible for a traditional belt monitor to not work on some people.
She left and came in thirty minutes later as I was panting through yet another contraction. I said, "Is it possible to have a five minute long contraction?"
Her response after looking at the printed recording: "Seeing as you've been contracting for twenty minutes straight without a break in them, yes. How are you even talking right now?"
I swore the baby was about to come any second. There was no way this could last much longer. I started to get really excited, and the nurse called the doctor in. Time for a check--and then--two. TWO measly centimeters. Thirteen hours of labor. I started to cry. Like, really cry. The doctor stopped the pitocin immediately, and I yelled something about how they should have believed me earlier that I was having abnormally long contractions.
Just so you know, there is definitely a testy Sara. This Sara hates doctors, hates childbirth, HATES Lyme pain during childbirth, and in the heat of the moment will say things like, "Cut him out of me now or I will do it myself." If it's any consolation, I said please. Then I cried and twitched some more.
Once pitocin stops, contractions are supposed to taper off right away. My body decided to rebel and the contractions actually increased in intensity. My doctor, who was excellent in handling this whole situation (I should have given her props earlier--she truly was great), decided enough was enough. I was gray in the face and my blood pressure was dropping (though the baby maintained an awesome heartbeat throughout labor), and I was not going to progress. If I did, it would have been at least another nine or ten hours of labor, to which I said "Aww heeelll no."
Because of the neuro damage factor, I had to be put completely under for an emergency C-section.
I was really scared as I said goodbye to my husband. I didn't feel defeated--I was more than ready, but I was sad that we weren't going to be able to share that moment of birth together. And of course I had thoughts like "What if I don't wake up?"
He had to wait outside during the surgery. I told him I loved him and to kiss our boy for me. Then I went to sleep.
When I woke up, I waited impatiently in recovery and asked a million questions. Was he healthy? Were there complications? Who did he look like? Did he have hair? Those were the longest 45 minutes of my life.
He was healthy, cord blood was gathered for testing, his Apgar score was awesome (a 9 at 36 weeks!).
The only issue was that he was literally stuck. It took a while for the doctor to get him out, as he'd wedged himself somewhere between some bones, and it seems as though he had been there a long while. That explains the mystery aches and pains and also why he never really changed positions throughout the pregnancy. He'd borrowed his way into some uncomfortable territory.
So whether the labor lasted 15 hours or 48, it would have ended in a C section anyway! Goes to show you that you can plan all you want--your baby might have other plans!
My husband came in and we shared happy tears. Then came our beautiful baby boy. 7 pounds 11 ounces of perfection. Never in my life have I experienced so much love. As cliche it sounds, it's a love that you don't really know exists until you hold your baby for the first time. And for a short time, there was no labor or surgery pain, there was no such thing as Lyme disease or years of treatment, or worry about congenital transmission. It was just a mama and a daddy and a new baby, and life was so good.
That's my story and I'm sticking to it.
I'm off to change a diaper, but please stay tuned for info about how we dealt with Lyme in the hospital, reactions from doctors, future treatment and baby testing, and what the recovery process has been like. As always, any questions, let me know and I'll be glad to share any info I have.
Saturday, July 24, 2010
Tuesday, July 20, 2010
As you know by now, my neuro symptoms have become a huge problem during these past few weeks. The electrical surges are quite painful, the twitching is embarrassing and restricting to say the least, and the lack of sleep it all causes is not helping. I am tired of being curled up and crying in pain. Physically and mentally, I can't take it much longer.
Surprisingly, I got the letter I needed from my LLMD stating that I would have an antibiotic change as soon as I deliver the baby. This means I can have induction approved.
It's been one week since my OBGYN decided it would be best for all parties to induce labor (at 36.5 weeks), and I went for a checkup yesterday so she could confirm that this was still the best approach to take.
It's amazing how slowly some things move in the medical field. Lyme treatment approval, for example. That crap can take months and doesn't come without a fight and filling out tons of paperwork. On the other hand, you want make a baby come out? They'll have your world turned upside down in a matter of hours. "OK, can you get to the hospital for your preliminary testing in an hour?"
Ummmm, no, I can't.
So here's the deal: tomorrow morning at 7:15 I arrive at Labor and Delivery to have a non stress test which will be followed by an amniocentesis to determine if Wyatt's lungs are fully developed. It's standard that they do the amnio, even if they believe all is well, because they can't authorize an early induction (before 39 weeks) without one. They're covering their butts, but most importantly, they're covering all bases to make sure they're not rushing things.
I've read about a million posts out there from moms who scorn anyone that decides to approve the induction procedure, as childbirth is natural and you shouldn't rush nature/God/your baby, what have you. It's selfish and the baby will come out on his own schedule. These are also the women who vehemently demand that all women breast feed, and if you don't you are obviously a bad parent content with pumping your kid full of Satan's nectar. My answer to them is piss off.
You have to do what is right for you and your child, and quite frankly, I don't think any of these women have experienced severe neurological pain.
I obviously don't have experience with the whole childbirth thing, as I am a first time mom, but I already know how tricky pregnancy is when dealing with Lyme, and I don't imagine labor will be any different.
In fact, I just had to leave this blog post to take a call from my OBGYN (this is the third call so far today in getting everything ready.) She said that they've met with all of the nurses and doctors to explain my situation (I'm a sick, convulsing mess) and all agreed that a vaginal delivery would be best, BUT the anesthesiologist won't give me an epidural or a block due to my nerve damage. There is a chance that if I get the epidural, there will be more permanent damage to my nerves, and I may actually lose some feeling forever (no thanks).
If for some reason I need a C-section, they will have to put me under. I've had this news for about two minutes, so I don't know how I feel about it yet. My first reaction is that I am sad and afraid. I can't imagine not being able to hold my baby right away, and it takes about an hour to wake up after it's all over. Fingers crossed for no section. I guess in the end this is good info to keep in mind if you have nerve damage?
So, amnio in the morning. Test results come back within a few hours, and if he's good to go, I check in at the hospital tomorrow night to start the induction process.
As I type this, I am really having second thoughts about going through with this. I have huge amounts of anxiety now, and I wonder if it would just be better to suffer through the next month. I still wouldn't be able to get the epi, but my chances of a c- section drop a bit, and I wouldn't have to deal with pitocin contractions (which I hear are super hard and extra evil). But if I chicken out, it's still a month's worth of sleepless nights and painful days, so that all evens out, right? Ack!
After all of this new information, my main issue comes from the end of the phone conversation when my doctor said something along the lines of,
"I want to make sure we're prepared, so I've called two other high risk doctors in the area. They've all assured me that Lyme is not a problem for the baby, and anyone that tells you that your baby can get it has very outdated information. I even talked about it with Dr. ____, your pediatrician, and she agrees that Lyme won't be a problem for the baby."
Noooooo! You were on my team! Not that I want my kid to come out a Lyme baby, but seriously?! You now want to deny Lyme exists in infants and tell me my pediatrician will deny it as well, less than twenty-four hours before I go to the hospital to deliver? She was trying to reassure me, I know, but now all I can think of is how every single one of these doctors is part of the "enemy" camp.
I need to stop this rambling now and clear my head. I'll post an update when I come to the most rational conclusion.
Any experiences/suggestions are welcome. What would you do?
Wednesday, July 14, 2010
I've never done any "DIY" testing, meaning, I've never had blood vials sent directly to my home with the expectation that I'd coordinate the blood draws, so I thought I'd share some updated infant Lyme testing info in case you're like me and you feel out of your comfort zone when you receive your IGeneX test kit in the mail.
Initially, I posted this on cord blood testing for Lyme.
Here's a little more info now that I've seen the kit and talked to my doctor:
This is a picture of the kit as it arrived in the mail. They send you all the packaging you need to send it right back out again via FedEx. There's a Fed Ex form in the package checked for two-day mail. Either the hospital can take care of the whole collection process when they collect the blood, or you can call the Fed Ex number posted on the mailing slip and they will come collect it for you. Just tell them that the contents are blood samples and are time-sensitive. (It says on the IGeneX package that the blood must be tested within four days, so that gives you a bit more time--your partner won't be running around like a lunatic trying to find a Fed Ex facility.)
And here's what it looks like all opened up. Two vials for the cord blood collection. Plain and simple.
The trickiest part is going through the packet of forms they send. There are about seven sheets, but you'll probably only use two of them, as they're mostly info sheets. One lists the different kind of tests and the prices (this doesn't mention test you're doing, #477, $235). It's good to look at, though, in case you and your LLMD decide to test for other things, especially co-infections. My Bartonella has flared up like a mofo lately, so we added that to the mix (at an additional cost of around $250).
Then you have the actual info form. You fill your baby's info (do as much as you can before you deliver, that way all you have to do is enter the birthday when it happens) and select the testing you want done. The infant panel #477 is an option on this form, and that's the one you definitely want to check.
IMPORTANT: I originally mentioned that you didn't need a doctor's order for these tests. That wasn't entirely correct. You don't need an order to request a test. YOU NEED A SIGNATURE FROM YOUR DOCTOR in order for IGeneX to accept the blood samples and have them tested. There's a section for your doctor's info and signature on the sheet you fill out for testing. Your LLMD can sign it or your OBGYN. Doesn't matter who orders it, as long as you can legally call them a doctor.
Finally, just to make sure that your OBGYN knows what's going on, I recommend bringing in the test kit to him/her during one of your prenatal checkups. I did that yesterday, and she greatly appreciated the heads up. She said the testing is super easy, and they do things like this all the time. For some reason, I still felt the need to justify my wanting to test the cord blood. Her response: "Well, you might as well! You could catch a problem early if there is one, and it would be a shame to waste the blood because we just throw it away anyway!"
She signed the form for me beforehand, so on delivery day there's nothing to worry about.
Once you have all of it filled out, put the entire kit in your overnight bag for the hospital so you don't forget it on your delivery day.
Tuesday, July 13, 2010
First, thank you all for the support you've given me this past week. I've received a bunch of great emails and comments, and it means a lot to know that I'm not alone as my symptoms completely drive me nuts.
As I mentioned, I had my OBGYN visit today. She asked how I was doing, and I could barely keep the tears in. My response: "I try really hard to come in smiling and not be a problem patient, but I am so sick right now I can't even fake it. I can't live like this anymore."
She asked about my symptoms, about how the baby is acting inside my belly (he's still a happy, karate chopping jumping bean), and then she caught glimpse of the endless twitching.
"Wow. I've never seen you this bad before."
Tell me about it.
"Have you ever had a patient like this before (with so many neuro problems)?"
I was slightly disappointed to hear that she hasn't.
It doesn't help that she caught me on a day when I'm running on three hours of sleep (the bone pain and electricity kept me up, and I finally caught a nap after I watched the sun rise.) Sleep deprivation = extra twitchy and my eyes were little puffy slits.
I'm not trying to make this overly dramatic--let's just say I'm looking a little rough these days.
After the normal monitoring and testing, she said that my cervix is thin, but I'm not dilated yet. We talked about what was going to happen right after birth, and I relayed the info I'd gotten from my LLMD--we're limited to Zithromax for the remainder of the pregnancy, but the second this guy comes out, I can switch to something more effective for me. I told her I planned to have my bottle of Minocycline with me at the hospital (it's already filled) so I can at least start on something better right away. (IV is not an option at this time for many reasons, but mostly because I just don't want to deal with it.)
Then she surprised me:
"Living with this much pain is torture. If you can get better treatment as soon as you give birth, then I think it's time to evict this baby. "
I couldn't agree more. That said, we have to make sure baby is healthy and ready to be evicted first, because it really is all about him. OBGYN consulted with a couple of other doctors, and they agreed that an early induction would be best for all, but I need a couple of things first:
1. An induction can't get approved unless my LLMD writes a note saying that my Lyme treatment will change after I give birth. Sounds simple enough, but from the beginning, LLMD has been hesitant to help with anything baby related (a case of covering asses, I'm sure), so we'll see how that goes
2. On Monday I will have to go in for another weekly OBGYN checkup to see if I've dilated or my symptoms have improved (I can change my mind about induction at any time, especially if I'm feeling better). If I'm still a twitchy crying monster, we will proceed with an amniocentesis
3. I'll have the amnio to make sure that Wyatt's lungs are developed and all is well in baby town
4. Regardless of my pain and weakness, I'm still on board for trying to deliver vaginally, so if the little guy is able to take a big breath of air, I will be induced.
I'm assuming all of this will take a week, which puts me at a delivery of right around 37 weeks (technically considered full term.) If all moves quickly, though, we're going to be parents NEXT WEEK. (Holy crap.)
Talk about a major surprise.
To celebrate, I had my husband buy me a box of Benadryl. Hoping that antihistamine will knock me the heck out so I can rest up for the craziness that's about to take place.
I'm ready and I'm not ready. A lot to take in all in a day, but I just keep thinking about the prize at the end. Wyatt will be safe, and I can start a new treatment plan instead of continuing on this declining path. And, oh yeah, I'LL BE A MOM!
All I want is to be able to be there for my son. I want to enjoy those first few weeks of his life where everything is new and beautiful and somewhat surreal. We are almost a real family! No matter what, Lyme Disease will not take that from us.
Monday, July 12, 2010
I haven't been able to write as much as I've wanted lately, though I will report that I have doctors appointments tomorrow, which will allow me to give you some more updated information on Lyme testing for infants (I got our test kit in the mail!), as well as an LLMD's advice on what to do when you're in so much pain that all you can do is lie on the couch and cry.
Sadly, that's been my life for the past week, as symptoms have flared up to an excruciating level (dead arms and legs, clawed hands, and the lovely sensation of a very strong electrical current running from head to toe. It doesn't quit.
My fatigue is indescribable, and all I can think is, "For the love of God, please C-section me and get this baby out because there is no way I will have the strength to get through labor. At least not when I can barely move half of my body and I'm twitching uncontrollably. In my perfect world, Wyatt comes early, and the second he lets out that first amazing cry, I start popping a wide assortment of stronger (less expensive) antibiotics.
I am usually one to take a positive, optimistic approach, but I'm afraid I have nothing good to offer today. This just plain sucks.
The somewhat good news is that there's less than five weeks until my due date, if I make it that long (I swear, I am going in there tomorrow begging for early induction or C-section).
My fingers are crossed for a miraculous recovery of sorts--you know how crazy Lyme can be--you want to keel over and die one minute, and then the next day symptoms can lessen for no reason.
Actual info with less complaining coming to you soon.
Tuesday, July 6, 2010
So you've devoted the past nine months to making sure you do everything in your power to keep your baby Lyme free. Safe antibiotics throughout the pregnancy, lots of vitamins and approved supplements, extra rest, but mostly prayers and crossed fingers because you know there's still so much unknown about the disease, so all you can do is hope for the best.
I'm not one to offer a strong opinion here, as I'm aware that everyone's Lyme journey is different, but I will break my rule and urge you to do one thing: Test that little babe as soon as he or she comes out. Even if the tests aren't always accurate, there's a chance you might catch those little buggers before Lyme takes hold for the long run. You've got nothing to lose but some money, and it will cost you a hell of a lot more to treat than it will to prevent.
Prior to last week, I had no idea about where to go or what to do in terms of testing once the baby is actually born.
As usual, number one thing to do is make sure all of your doctors are communicating about your progress and treatment course (even if communicating means you personally deliver updated information regarding your status and charts).
It took a little bit of going back and forth between OBGYN and LLMD, but I came across the following information
(Keep in mind, there are probably a bunch of different ways to handle testing, and your doc might offer something different. Please share if that's the case. This is just one option):
IGeneX, the same super-awesome lab that does all of our adult Lyme testing out in CA, also offers cord blood testing for infants. It's not something I've seen on the main site, but when I contacted customer service via email, they promptly responded and gave me the following information:
* The blood testing they do comes from the cord blood and is collected painlessly and immediately after birth
*You can request to have a test kit sent to your house (no doctor order necessary--you can do it yourself) by emailing customer service or calling them
*You'll want to order the test kit a bit early (maybe a month or so? You never know if junior is going to show up unexpectedly)
*For reference, the test number to request is #477
*There is no immediate charge. They will send the test directly to your house. You will enter your credit card number on the form that goes along with the blood sample to be sent in, and you'll be charged once Igenex receives the sample
*The cost of the test is $235 (A hell of a lot less than what I expected/compared to adult testing, so I'm wondering if it's not as extensive as other tests. Sorry, don't have any info about that yet.)
*Whomever delivers your baby will know in advance (have this conversation earlier than later!) to collect the cord blood in your kit
*I'm not exactly sure how blood-sending works. Common sense tells me you can't legally leave the hospital with vials of blood, so I'm assuming the hospital staff will send it out to IGeneX. Again, make sure your delivering doctor knows this in advance
*Results are sent to your home. It's up to you to report the findings back to your LLMD
*If there aren't any spirochetes found in the cord blood, chances are, the antibiotics worked! If they do find traces, obviously, whatever goes through that cord goes to baby. I hope none of us have to experience that, but if it happens, it's not necessarily the nasty, lingering, chronic Lyme that we have. My LLMD said that if it's caught early like this, we'd just put our little guy on a baby dose of antibiotics
There's always the possibility that the baby will test negative but will display Lyme symptoms later on down the road (my LLMD recommends testing the baby again a few months after birth, just to be safe), but let's stay positive for the time being.
It's good that we're not in the dark about our own disease, and we know what to look for. As you probably know already, some symptoms can be sneaky, and a two-year-old isn't going to be able to say, "Mommy, I have vertigo, fifth cranial nerve swelling, and some neuropathy!" In addition, keep an eye out for unexplained pain, developmental and speech delays, signs of Autism, and neurological symptoms.
Again, I do have faith that since we know the drill and we know what we're treating, we won't have to become the horror stories we sometimes read about. It's all about being proactive and staying educated.
I will post more info on testing as I get it. In the meantime, take care, and keep cool (it was over 100 degrees here today! No one wants a cooked baby. Or a melted mommy!)
Thursday, July 1, 2010
Parenthood is rapidly approaching now, and it seems like each day we're doing something new to prepare for our little addition. Part of this preparation has involved making sure that all doctors are on the same page when it comes to symptoms, progress, and what to expect during the birthing process.
On top of that, it's good to keep an ongoing list of those last minute (but important) questions, and make sure they're resolved before the big day gets here.
Specifically, here are some things I made sure to discuss with my doctors this week (along with their responses):
1. (OBGYN) Q: Based on my current physical condition, are we still on schedule for a natural childbirth?
A: Yes, a natural birth will be fine, and if there are complications, a C-section is a safe alternative.
2. (OBGYN) Q: Banking cord blood seems to be the latest and greatest thing right now. Is it worth it, or is just another way of sucking a couple grand out of consumers?
A: The patient response has been 50/50. Some are all for it, some people pass, because it's still relatively new. I can't tell you what to do, but I will say that they are discovering more and more uses for the cord blood every day. If you have the money, it might be worth looking into, but again, it's a personal decision. If you decide to do it, just check with your Lyme doctor to make sure the blood is not damaged from the Lyme. I'm not familiar with that aspect.
3. (LLMD) Q: I'm considering banking my baby's cord blood. What are the chances it's infested with nasty little spirochetes? Is it worth saving, or would I just contaminate my child if the cord blood use was ever necessary?
A: You can bank the blood. If you want to bank it, just have it tested first. You can request that they test it for Lyme at the hospital once the blood is collected and before it's sent out to the banking facility.*
*I am a bit skeptical about this, as we've all done the research--often times standard Lyme tests are falsely negative and not sensitive enough to pick up on the infections. At the same time, some testing is better than no testing. But ultimately, I'm still not sold on the whole banking the blood thing. From what I've read, these private companies are preying on scared new parents (no surprise there), and it's not worth it in the end because other people's stem cells are more effective anyway in the fraction of a chance you'll ever need them. Anyone have any input here? Did you bank your baby's blood, or have you decided to do so after you deliver?
4. (LLMD) Q: After I give birth, can I IMMEDIATELY switch my antibiotics to something a little more aggressive?*
*I am not breastfeeding, and my insurance doesn't cover my Zithromax Rx (which barely does any good anyway), so I'm paying over $400 a month on antibiotic pills alone. I've actually had to skip a few weeks here and there because we couldn't afford to fill the bottle.
A: Yes, you can switch back to one of the orals you were on pre-pregnancy, especially since you still have some filled in your cabinet. We can assess if another round of IV is a better option once we see how your body handles the birth. But give it AT LEAST two to three weeks on the Zithromax orals post delivery before you start thinking about more aggressive treatment. The time after childbirth will be a very important time for restoring balance and testing to see how much you can recover naturally. You don't want to rock the boat. We'll see you a month after the baby is born to further assess.
I'm sure there were additional questions, but this is what my foggy brain recalls so far. I'll post more as I think of them. Right now, it's time for my after-breakfast nap. Pathetic, I know. Go ahead and laugh, and then get back to me when you're nearing the end of the third trimester! (I've heard we should enjoy nap time now, as we will forget what sleep even is sooner than later.) I say bring it on!
Sunday, June 20, 2010
I have a bunch of updates to share, and I also have a bunch of LPJ emails to respond to, so I'm sorry for the absence lately.
My husband and I, the gluttons for punishment that we are, decided it was a great idea to move into a new condo during my 32nd week of pregnancy. It's a fantastic, warm, and happy place, and it turned out to be a great decision in the end, but as you probably guessed, things are slow moving at best.
Boxes are stacked high, and furniture is coming in piece by piece. I will return asap to discuss the joys of third trimester Lyme pregnancy. Until then, I'm spending the next few days nesting and making a new, baby friendly home with the man I love most.
Enjoy this Father's Day weekend!
Friday, June 4, 2010
We're coming up on thirty weeks now! We grow more excited to meet this little guy every day!
Everything has checked out fine during my regularly scheduled OBGYN visits, but since this pregnancy is considered high risk, we're starting some new tests that will be done every couple of weeks for the remainder of the pregnancy.
Some doctors will suggest that you have these tests, just to stay on the safe side. My insurance covers them, so I say, bring them on!
The first test is simple. It's a fetal growth scan, and it's exactly how it sounds. They do a quick (literally five minutes, much to our disappointment) ultrasound scan to measure the baby's weight. We had our first scan today and learned Wyatt is nearly four pounds! It's amazing how much different a baby looks at thirty weeks as opposed to the earlier"extraterrestrial" versions. Don't get me wrong, ultrasounds can be quite otherworldly (to put it nicely) at all stages of pregnancy... as you can see from the photo above (a front view of Wyatt's face) they still look like aliens in the third trimester. Now they're bigger, lovable little aliens that make your heart melt.
The second test is a called a non stress test. Non and stress are the key words. It's easy and won't hurt you or the baby at all. They put a belt monitor on your belly to measure the baby's heart rate and to measure if there are any contractions happening in there. They record for twenty to thirty minutes any fluctuations in movement and heart rate. They also stimulate the baby by putting a buzzer against your belly to get him or her moving, especially if the baby is sleeping. Again, much like charting growth, the purpose of this test is to make sure the baby is on track and reacting like it's supposed to.
Chances are, if the little one is in the proper growth range and is reacting normally to outside stimuli, all is well in babytown.
You doctor might skip these tests all together (depending how concerned he or she is with the Lyme). I think I'm due for 2 more growth scans before delivery, and I will go in for the non stress test every two weeks.
Personally, though I know all is well based on intuition and the fact that this kid already has a black belt in karate (he kicks like you would not believe!), I enjoy the bonding time with the little one--getting to see him and track his movements. I also appreciate that my doctor is extra cautious rather than passive. I've had enough unconcerned doctors to last a lifetime, and this change is a breath of fresh air.