Things Are Lookin' Up

I had an appointment a week ago, which was super short and to-the-point, but super encouraging.  I'd been questioning whether or not I wanted to be on antibiotics, because although no one can tell me how long I may be on them, the first course alone is 3 months.  My doctor told me it wouldn't be abnormal for me to be on them for 2 years...  Holy moly, right?

When my doctor first asked me how I felt about antibiotic treatment, I was too overwhelmed to care.  I thought "you're the doctor, I'm here to do what you recommend at this point."  Only a few days after I started them I was having second thoughts; I think mostly because the amount of white pills I consume daily is increasing and I hate that, and we all know how long term antibiotic use can affect someone.  I also wanted to be able to feel their effects, to know that they're going to do some serious business if I'm going to be taking them...  And nothing seemed to be happening.

I had been waiting to have a giant herx, which is definitely no fun- like a "having bad symptoms today?  Let's make them a million times worse!" type of thing (herxing is when you have a reaction to the load of toxins being released in your body...  When bacteria die they release toxins.  We're hopefully killing a ton of bacteria here, so I was expecting the worst).  I was still having up and down days, but nothing that I couldn't handle, nothing worse than I'd ever experienced before, and if anything, I was having more "up" moments than "down" for the first time in months.  Although I'd never wish a herx on anyone, I almost hoped I'd herx so I knew the antibiotics were doing something- so I knew that large amounts of bacteria were dying for sure.  I actually had a few days where my symptoms were almost nonexistent (almost..).  That hasn't happened in 7 months.  So what was happening?  I was confused as to why some symptoms went "poof" when my understanding was that they were supposed to get worse before they got better.  I was really thankful to have those days that I felt really well, but I wasn't sure what they meant.

So hallelujah, that my doctor believes my response means the antibiotics are doing their job.  She said a herx is something we want to avoid.  My understanding was that it was almost inevitable; apparently not.  She said herxing usually happens when you don't respond well to your treatment, or it's too much, too fast.  So the fact that my symptoms were waning meant that I'm probably on the right thing, and the right amount.  The. Best. Words. Ever.  I know that sounds dumb- I was starting to feel better and was afraid of that?  Only because I'd been told so many times that a herx was a possibility (if anything, I was told "you will herx"), and meant that the bacteria were dying.  Again, I thought it was inevitable and a good sign, even if it made me miserable.  I also know that the bacteria are highly evolved little buggers and that some treatment forces them to change forms so that they can hide- I was really afraid that was happening.  But for now I will take every moment of feeling a little bit better, and believe with every particle of my being that my response means that this is already working.

My doctor did some small tests to check out my nervous system and said that neurologically, I look a lot different than I did on day one.  She could tell things have settled down a little bit.  Woo hoo!  Let's keep that going!

I've had a little bit of a setback this week- we just moved and I overdid it.  Symptoms are creeping back in (pretty major pain and tons of internal tremors and vibrations mostly), but hopefully I'm working my way to a point where I'll be able to bounce back a little easier from things like that.  Fingers are crossed.

I have two more months of this round of antibiotics, and in a month we're likely going to keep one and switch the other out with a different antibiotic, so the bacteria don't get used to them.  Happy thoughts that things continue to go forward and not backward!

Today, I am thankful for some moments of relief- they're the beacon that remind me that I'll find the way.

Who's In Charge Here?

Who's in charge here?:  

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.