Our Current Quest

Right now we are trying to figure out what to do. I MUST get back on treatment. I'm having all my old symptoms, plus new ones. In order to start treatment again, we've got to figure a few things out. This has become our quest lately, or at least my quest, and last night I apologized to my husband for having tunnel vision about it. It seems that its all I can think about, when I'm able to think clearly. It's hard not to think about Lyme Disease constantly, when I'm constantly dealing with the effects of it. So I'm trying to channel that tunnel vision into a productive, useful purpose. Might as well try to solve some problems. There are three basic things we need to do:

1) Find an LLMD We're Comfortable With:
First, we have to find a doctor, an LLMD with a lot of experience, who will be willing to take me on. We've been investigating different options that we've been able to find on our own, we've also been checking into references given to us by others. Additionally, I've checked in with a couple of resources that help with LLMD referrals. We were hoping to find someone closer than Seattle, which is where I travelled four years ago to be treated by an LLMD. I'm not sure that we're going to be able to find anyone we're comfortable with any closer than that. We need a doctor that is very familiar with Lyme Disease and it's co-infections. I've had this long enough, and I have enough co-infections to have a pretty complex case, although I believe that anyone with Lyme Disease has a pretty complex case. We just really worry about the level of experience with an LLMD. It's not enough just to throw antibiotics at this thing. And when you're talking about long-term, massive doses of antibiotics, it gets even trickier. My former LLMD used integrative medicine, a combination of pharmaceuticals and nutraceuticals or supplements all throughout my treatment. I really believe that this combination helped me get better faster, and with less complications and side effects from the antibiotics. We're hoping to be able to find someone who uses integrated medicine as well.

2) Figure Out How to Pay for It All
Finding a way to somehow come up with the money for me to start treatment again is probably our biggest obstacle. That old saying that goes, "beg, steal or borrow" might be very applicable here. We're not willing to steal, of course, but I think that we are to the point where we may be ready to beg and borrow. We've actually been looking into fundraising options and other ways to earn some extra cash. The cheapest treatment that we've found starts at $6,000 for a minimum 8 week commitment, but it goes up from there based on how sick you are, the type of treatment and medications required and how well you respond. That's not including travel expenses, lodging expenses, daycare or babysitting expenses for our kids, or any extra medical expenses that might arise out of treatment. Treatment makes you SICK, and it can require lots of other appointments and expensive tests to make sure that you're handling it all. It's not unusual for Lyme patients to spend $75,000-$100,000 out of pocket on treatment. We spent in that ballpark on my two-year treatment starting back in 2009. The only reason we were able to do that was because I had ownership in a business I was able to sell, and my husband worked two full time jobs the entire first three years of our marriage. It seems daunting, but I'm trying to remember that the Lord will provide. He always has, and He always will. Somehow. I'm also a big believer in that old adage that "the Lord helps those who help themselves," so we're praying hard and trying to get creative.

3) Continue On with Life Until Mommy is Better
The third thing we've got to figure out is how we do this while my husband stays in school. My husband is just finishing up his first year in Veterinary Medicine. It's a four year program, and it's all or nothing. If he had to withdraw from school for any reason, he would have to reapply, start over at square one, and we lose all the time, effort & money we've spent on this first year. Withdrawing from school is simply not an option for us. Having said that, it's going to be a tricky thing to coordinate me getting treatment, (and possibly being bedbound a great deal of the time it's going on) Bryan continuing in graduate school, getting the kids taken care of, and maintaining our life (bills, housework, etc.) all at the same time. When I first found out about Lyme Disease, and started on treatment, I was a single girl with a good job, but other than that, not many responsibilities. Treatment was hard, but I didn't have anything else to worry about but getting better. Now, my family is a huge concern to me.

All these things have added to the mix of things we're trying to figure out. At first when we realized that I was probably relapsing, I was not in a good frame of mind. I cried a lot and yes, I felt sorry for myself. And I worried about all of this stuff. There are so many unanswered questions. But for the last couple of weeks I'm in a better place, realizing that somehow it really will work out. I also had the realization (once again) that THIS IS IT. We each get one shot at life, and I'm smack dab in the middle of living mine. Whether I like everything about how it's playing out or not, this is my life. I can spend it being angry and bitter about things over which I have no control, or I can choose to focus on all the wonderful things I have in my life, and make the most of each day, in spite of what might be going on. I tried really hard to focus on those things the last time around, and I believe that it made a big difference. Lucky for me, I have a wonderful husband who also helps me to focus on those things. We are also blessed to be surrounded by wonderful family and friends, and with the Lord's help, we will figure it all out.