Lyme Pregnancy Q & A: Heather's Story

Heather's had her fair share of struggles with Lyme. She's a huge inspiration to me, as she's still in the beginning stages of her treatment (remember those extra scary dark days?) and still manages to care for her kids, all while battling illness, making a difficult move across the country, and doing what's best for her family, even when it means making tough decisions and sacrifices. Here are some of her thoughts based on her Lyme pregnancy experience:

How long have you had Lyme; When were you diagnosed?

I have had Lyme disease since 1989 when I was bitten by a tick in the Sierra Nevada mountains in CA. I wasn't diagnosed until mid - 2010 and my real, debilitating symptoms started in 2007.

Were you treated before and/or during pregnancy? If so, what were/are you taking?

I was not treated before or during either of my pregnancies because I didn't know I had Lyme! I suspected I had something that could be killed by some sort of anti-fungal or antibiotic so before my second pregnancy I was on Olive Leaf Extract and Lauricidin. DURING my second pregnancy I was on Lauricidin, Vit. D, and prenatals. But I had no idea I had Lyme or that whatever I "had" could possibly be given to my unborn child. I'm thankful for (so far) very healthy girls.

How did you feel physically during your first trimester?

Both of my pregnancies I was so so exhausted the first trimester. I could hardly do anything. I was also so nauseated that I threw up until week 21! I tried all sorts of anti-nausea meds and none really did the trick.
Second? Like I said, mid-way into the second trimester I still was throwing up. But once it passed I felt great!!! NO fatigue, no joint pain, everything was awesome physically! My husband and I actually thought that being pregnant was the answer to avoid all the pain and fatigue I had been in.
Third? Both pregnancies ended up with me having kidney stones in the third trimester. There isn't much they can do for you when you're pregnant so I just had to stick it out until they passed. And toward the end of both pregnancies I was pretty tired.

How did you hold up mentally during your pregnancy?

First trimesters I was always depressed. Probably because I felt so ill with no "light-at-the-end-of-the-tunnel". And my second pregnancy I was also depressed in the third trimester but it went away fairly quickly after my daughter's birth. Again, since my Lyme symptoms had disappeared during pregnancy and I also didn't KNOW I had Lyme, there wasn't much to worry about. I think if I got pregnant again now that I know what disease is hurting my body, I'd worry so much just because those hormones make you so imbalanced! Crying and irritable and for me, irrational sometimes.

Did you experience a flare-up in symptoms after delivery?

Most definitely, but not until about 2 months after the birth did the flare-up symptoms creep in. Joint pain, fatigue (not your normal baby-sleep-deprived state of mind), mental confusion, and twitches.

If so, how severe has it been, and what are your limitations?

After my second baby, I was diagnosed with Lyme and within a few weeks of finding out, I started having seizures for the first time. But before that, I was debilitated enough. The joint pain was manageable (meaning I could work through pain) but the fatigue was impossible to manage. There really isn't anything you can do about being so fatigued you can't move. I was confined to the couch or bed and my two littles had to be cared for by loving relatives and good friends who would come to the house during the day until my husband would get home from work.

What was the hardest part about pregnancy with Lyme Disease?

I think just not feeling well but having to care for another child and thinking that you'll have TWO soon and now sure how you'll feel physically after the birth.

What is the hardest part of being a mom with Lyme disease?

The hardest part of being a mom with Lyme disease is the physical limitations. Most moms have an instinct on how to balance life with one or more children alongside the normal requirements of home or work life--multitasking. With Lyme, I found that I went from someone who multi-tasked very well, to someone who could NOT do more than one thing at a time and could only really BARELY do the bare minimum for my kids (feed, change diapers, and put down for a nap). My sole focus went from being my kids' mom to being someone who could barely even care for myself. The GUILT that comes with that is almost unbearable. You feel as though you aren't good enough for your kids and that they are missing out on a normal childhood; wishing you had the energy and state of mind to read to them, enrich their little learning brains, and giving them the physical loves and hugs they need. I find myself needing to tell my 3 year old multiple times a day, "No, you can't sit next to me, you need to sit on the other couch" just because of my pain level. And it kills me every time. I try to take advantage of any "good" moments I have during the day to encourage, speak kindly, and give hugs to both my girls.

One of the toughest decisions my husband and I had to make was to send our oldest daughter (only 3 1/2) to stay with her grandparents for a month so I could get the rest I needed before making a big move across the country. Thankfully we felt comfortable with my parents caring for her and trusted them, but still, it was hard to be away from her (they lived out of state) for that long. But it was a wise decision because my body was able to get some rest that it needed at the time.

Do you have help when you need it? In what ways were you able to reach out for support, and have you been successful?

Most of the time we have had help when we needed it. When my husband was deployed to Iraq, I was at one of my sickest times and my family really stepped up to help me. Even some close friends would step in to chop veggies for that night's dinner if my wrist joints hurt too much to do it or even just stop in to clean my bathrooms or do other various household chores every once in a while.

When my husband was home and a year or so later, I became really sick again and we found that our church friends really served us with earnest hearts. They found time in their busy schedules to come babysit the girls while I lay in misery on the bed or couch, or made dinners for us since my husband would get home too late to make a meal for us (I was too weak and fatigued to), or even just come and clean the house for me every week or so.

We have also had really supportive family even though they live out of state. They have flown multiple times to stay for weeks at a time to be "live-in" help for us. We have always been honest with them as to just how bad my illness is and they have never been unsupportive or questioned my Lyme disease. Even with conflicting information out there, they have always trusted us and seen with their own eyes just how bad this illness can be.

Looking back, would you have done anything differently (treatment courses, outlook, doctor communication, or would you have waited longer, for example)?

I think in my case, I had a gut feeling Lyme was the culprit for my sickness but I was so scared of it that when I was initially tested and it came back negative, I just accepted that. But deep down I knew it had to be Lyme and I wish at that point I had sought out wiser LLMD who could have diagnosed me properly. If I had done that, I MAY be feeling better today. But I know God has His plan for my life and sickness and He has me in this season for a reason. I definitely have grown a lot through it even though it's the hardest thing I've ever had to go through.

What's the best part about being a mom? Are you still able to enjoy motherhood even when you're feeling ill?

I love that even though I am feeling rotten, I get so much joy out of both of my little girls. My 3 year old is walking entertainment and I find myself writing down multiple quotes a day to tell her dad when he gets home from work. She makes me laugh all day, even when I'm feeling my worst. And my 10 month old is all smiles most of the time and I just love enjoying both of their personalities. Even when I feel my sickest, I can still enjoy their cuteness. My children bring SO much joy to my life that I do believe it keeps my spirits up even though my physical life is down. I've never regretted having my girls even though I'm ill.

How was your experience with doctors and hospitals? Were they accommodating? Did they understand your Lyme?

I've only had to mention Lyme to a general practitioner a few times because of how recently I was diagnosed. But the time I mentioned it to my doctor a year or two before being diagnosed, he tried to convince me that it couldn't be a possibility even though I had been bitten by a tick and gotten the bulls-eye rash. But, being a humble man, after I explained what I knew of the disease, he was willing to test me; it just wasn't the right test.

Now, trying to get a general doctor in the new place I live, was more nerve-wracking THINKING about it and whether I was going to be met with kindness or animosity than it was actually meeting with the new doctor. I was blessed to find a doctor who didn't know much about Lyme and felt compassion for me seeing me in a wheelchair at such a young age. He said he was willing to work with my LLMD and also said if there was anything else he could do for me, he would.

What advice would you give women who are considering having a baby?

I guess I would give the same advice I'd give to anyone considering to have children -- make sure you're ready for all the work it takes. It truly takes up every ounce of your body -- especially those first 2 months!! Know that having a baby is hard and even more so when you're ill. BUT -- it also is one of the greatest joys. You'll never regret having children. And I recommend having a great support base as you'll most likely need help. And most definitely accept help when it's offered....this took me a while to do but as I've lessened my pride I can see just how much I truly need/needed it.

As far as the possibility that Lyme can be passed to your children -- well, in my case I didn't know I had it when I had my children. But I am here to say that both of my girls are really healthy. We do suspect my oldest MIGHT have Lyme (only because of one symptom so far) but according to my LLMD, we wouldn't do anything about it until more symptoms arose and all other medical tests were exhausted. He said not to get stuck worrying about every little ache and pain but to let her grow and that we will "know" what to look for and when to seek help.

To learn more about Heather and follow her Lyme journey, see her blog, Today I Feel Exceptionally...