Positive Lyme Tests After Pregnancy

(Photo taken with Instagram: MsBirdieB)

It's been a couple of weeks, and I'm still trying to work out details with doctors and insurance for my last round of IV treatment.

I started questioning the need for IV in the first place after a solid week of improvements--I definitely bounced back from all of the viruses our family passed around, and I've been able to be pretty active with the kids. Definitely not the same sick person I was when I last wrote, however, many annoying symptoms remain, mostly involving joint pain, blurry vision, memory, and vertigo.
I'm sticking with the plan that if insurance covers me, great, and if not, I'll move on to plan B. What's plan B? Who knows--right now every last bit of my energy has gone into plan A. Ha!

I received my test results by phone today.
Initially, Lab Corp gave me a positive IgM band 23.
Igenex provided me with a positive IgM for 41, and an indeterminate for bands 31 and 39
I also got a positive IgG for band 39, 41, and 58

Apparently, I have put all co-infections to bed, because those were negative.

Here is a link that explains what the bands are, in case you're new to IgeneX or western blot testing.

Here's the bottom line:

Could this all be a result of pregnancy? Maybe, maybe not. It's hard to say, because I don't think I was ever in remission before or during both of my pregnancies. I truly believe that no one (ILADS or IDSA followers) knows enough about the disease at this point to pin down where things go wrong or why this disease is so hard to treat. Everyone seems to have a theory, but in reality, most are throwing solutions out there to see what sticks. That's why treatment is so "individualized."

I think a lot of things come into play in my case. Yes, the pregnancy was hard on my body; Pregnancy is hard on a healthy body. No, I wasn't considered "cured" when conceived. I've also dealt with three viral illnesses over the last couple of months, and I've also struggled with finding an antibiotic that works well for me. I've been run down, stressed, and lastly, it took over ten years to get my Lyme diagnosis. Who knows what the hell goes on in a body that's been infected without treatment for so long.

What I do know is that the only way to get through this is to remember that, even though Lyme hurts in every aspect, it does not have to dictate your outlook. Three years ago, I would curl up in a ball and feel sorry for myself on the bad days and come up with all sorts of dismal thoughts about how I would never be able to move on with my life. I didn't realize that as I was thinking these thoughts, my life was moving forward anyway, whether I wanted it to or not.

After a bunch of life changes, financial distress, and two kids later, I am still here. My family is still here, and it's grown. Despite a few hiccups and scares, I am relieved that my children are healthy, and I can't imagine a world without them. So, instead of allowing the fear to keep me from enjoying what I have, I decided to push through and live as if I'm healthy. When I need to rest, I rest. If I need more treatment, I need more treatment. Someday, maybe I won't.

As cliche as it sounds, when you have a chronic illness, you have to take it day by day. Today sucked, and I've spent most of the afternoon curled up in a chair with a baby in one arm, trying to complete this post. But yesterday, we took both kids to the playground in our neighborhood. I photographed the kids, helped Wyatt go down the slide eight million times, and giggled with him as he learned that he could blow the seeds off of a dandelion. It was truly a fun experience that made me appreciate all that I have. My bones ached, but whatever, they would have ached at home, too. My vision was extra blurry, and as I teetered down the street and my husband asked how I was feeling, I responded, "I'm on a boat!" (From the funny SNL video that's too explicit for me to link to here.)

Since I've had kids, I've stopped asking so many of the "why" questions. I'm sick. I'm not sure how long it will last. I will do what I need to do to get better, and I will love my family and have the best time that I can as I go through treatment.

Updates After Pregnancy

The number one question this past month has been, "How are you feeling?"

We're all terrified of the dreaded relapse or flare after childbirth; some women have a setback and some don't.
Emmett turned three months old yesterday, and up until a couple of weeks ago I was doing great. I recently had a major crash that my doctor feels warrants one final round of IV treatment, but neither of us attribute it to pregnancy or delivery.

I'm not sure if any of you deal with this during cold and flu season (please tell me I'm not the only one this happens to!) but the smallest cold sends my immune system on a rampage, and my Lyme symptoms emerge and flare to the point where I'm stuck in bed or taking a trip to the ER for scary heart rate issues or paralysis. It usually doesn't last long--a week or two--and I forget about it once I'm up and moving around again.

I now officially view children as little germ covered illness spreaders. In the last month Wyatt has shared with us three different viruses, because he insists on touching other sick kids and everything dirty in every public place. The first cold I bounced back from, the second left me with a nasty case of vertigo and nausea, and the third left me wondering if I will ever come back from this. I would definitely consider this a crash: vision so blurry I can't drive (which is not a bad thing, since last week I was pulling out of a parking lot and couldn't figure out which side of the road to drive on), horrible bone, muscle and joint pain, and sounds make my head want to explode. There's a much longer list of symptoms, but you get the idea, plus my energy is limited. I've been writing this post little by little for three days because computer screens are making me extra dizzy.

I was not thrilled with the idea of another eight weeks of IV, but my COBRA runs out at the end of December, and since my deductible was astronomical, I want to take advantage of any treatment I can get while it's covered. If it's covered. If this doesn't work, I'm swearing off antibiotics for a while and will try a more natural approach. In the end, my doctor convinced me that this was the way to go, because I was nowhere near remission territory when I got pregnant, and I ended up having two kids back-to-back. He wants to get a good, strong start to what is essentially the beginning of "real" treatment. It is what it is--no regrets.

Just waiting for current IGenex results to come back. We tried getting a positive through Labcorp, which is not as sensitive, and I only had one active band (23) come back positive this time around (my original IGenex tests came back very positive for Lyme and Bart and questionable for Babesia). If insurance won't cover this, I won't do the IV, plain and simple.

Bottom line: stay the hell away from sick people during the cold months, especially kids! I know, easier said than done.

That said, I have to say that I bounced back very well from pregnancy. An hour after I delivered Emmett, a new nurse came in the room and cheerfully asked if I was going home that day. When I told her I'd just come out of surgery, she thought I was kidding. I felt that much better immediately.

Granted, there's a lot to be said for pain killers, but I continued to improve as I spent more time at home, drug-free. Here are some things I've been able to do since I recovered from surgery (about two weeks after delivery):

-Carry and care for babies all day
-Chores around the house--dishes, vacuuming, straightening, laundry, etc.
-Cooking and baking
-Actively play with Wyatt, which includes chasing, rolling, dragging, and lifting
-Push a stroller around the neighborhood
-Shopping (Oh, how I missed you!)
-Walk the dog around the yard
-Go out for dinner and drinks with my husband
-Spend the day out doing fun things, like going to the flea market, visiting family, going to parks and farms, etc.

Some of the activities required rest the day after, but I can honestly say that until very recently, I've been able to keep up with healthy mommies in the activities department, and I've been having lots of fun.

There are dark days, and there are wonderful days. I choose to focus on the positive, and I believe that I will feel better and be active again soon, regardless of whether I get approved for the IV. I could use some discipline in the diet and taking good care of myself departments, but I'm working on it. How easily we forget that we've been ill once we start feeling better. I'm a work in progress, and there are good days ahead.