After my last appointment, the plan was to get started on injectable antibiotics (which would get into my nervous system more effectively) and oral antibiotics. It wasn't until I went to the pharmacy to pick these up that everything changed. To shorten an unnecessarily long story, when I went to initially pick up these prescriptions, the total cost just for the injections would have been over $1,000. I went home to think about it, went back in the next day to pick it up (with the help of our gracious family), and somehow they'd given me the wrong price the day before. The new total was over $2,000 for the injections alone. What?? How do you even get it that wrong? And, WHAT?! My insurance won't touch it with a ten foot pole, so it would all be out of pocket. $1,000 was enough to stop me in my tracks and think about it. But double that? Just for the first 3 months of treatment?
It wasn't a fun week for me, realizing that the one thing my doctor recommended I start with wasn't covered by my insurance, and was far too expensive for us to pay for. How did I get into a position where I have to choose between doing what's best for my health and being able to pay the bills? As if I wasn't already aware of how ridiculous our system is, this was a giant slap in the face. I'm standing at the pharmacy, physically leaning on the counter because I was so weak that day, and I had to walk away from the pharmacy empty handed. I felt betrayed by the system. I felt like "they" didn't want me to get better. I lost it.
I am thankful that the options even exist for me. There are so many places in the world where that drug wouldn't even be an option. The injections are there, if I could find a way to pay for them. But let's look at our system here. The receptionist at my doctor's office told me "I know you'll hate me for even telling you this, but if you got the same drug from a veterinarian, it would be $15." I didn't really know how to respond at first, because I wasn't sure how to compare the drug for humans vs. animals. I said "well, what's the difference?" He said "nothing. They're both human grade. The difference is the way they market it. That's the markup for humans." That's the markup for humans. $45 for 3 months, or $2,000 for 3 months. Yep, I was disgusted.
I cannot afford to pay $2,000 for 3 months of injections. We're looking at a minimum of 2 years of treatment. $2,000 for just 3 months is not adding up to a great total in the end. Although, if my health continues to decline at the same rate, we're also looking at a not-so-great outcome in 2 years from now. So, what do we do?
Okay then... New game plan:
Although my doctor said there's no alternative to the injections (there's nothing else that will do exactly what she wants those to do), of course there are oral antibiotics. I figured it's at least a start, and I can wrap my mind around the cost of the injections until I see my doctor again in a couple of weeks. I started two orals last Thursday evening (Oct. 30), and am taking 1,250 mg. daily between the two. They're pretty heavy-duty. The pharmacist made sure to ask if I knew what I was doing when I picked them up...
This has been so much more of a mental battle than I thought it would be. As someone who really believes in living off of the earth, treating as naturally as possible, eating/drinking organically, etc, I have a very hard time waking up and beginning my cocktail of drugs that are keeping me going. I'm taking meds to support my adrenal function (cortisol levels are on the floor in the morning and at noon without it, and the resulting fatigue is too much to be able to function), meds to stabilize my blood pressure (average blood pressure range is 80/40-90/50 without it), two antibiotics to kill this bacteria, and a plethora of supplements. I hate it. If they can make me better, of course I am thankful for that. I think the battle comes from not knowing if any of the treatment for Lyme will work.
Right now, besides the antibiotics, the meds I'm taking are to help various parts of my body get back to functioning normally, because Lyme is wreaking havoc on them. That's not taking away the Lyme, that's just handing me floaties until I can swim on my own- keeping body parts functioning until we get a grip on the Lyme. To me, it's like battling Godzilla... Godzilla's stomping on homes and buildings and ruining entire cities. We can start to pick up the rubble in the city, but Godzilla's still out there and is just going to find other cities to destroy while we're rebuilding the ones he already destroyed. Who's going to take down Godzilla? There are a lot of things that we can try, but no one can tell me for sure if any of them will work. It's all a guessing game as to what will work and when, and if. I'm still processing that. At my first appointment, my doctor said that if nothing else, we can hopefully prevent it from getting any worse.
Who's in charge here?:
As a total control freak, the lack of control is driving me crazy. I keep telling myself that maybe that's the lesson I'm supposed to learn here. I'm working on it.
Hi Kristen,
ReplyDeleteI am a good friend of Anne's (In fact I consider her to be one of my best friends). Anne and I were talking yesterday about your situation and she mentioned that she told you a bit about what I went through with my husband over the past few months. I had to do a bit of side stepping and fancy footwork to say the least. My suggestion to you is to see if you can get the doctor to give you the injections on an out-patient basis. I know that will work with most insurance plans and then for the most part the drug should be covered. Then also call the pharmaceutical company directly and see what they can offer you. I know how sick you must feel. But be diligent and don't give up. I pray that you will find relief and remission soon.
Anissa Akulonis