Well, Alright...

Opening Update:   

So I had my monthly doctor's appointment yesterday, and it went very well.  It went differently than I expected, but well.  Today marks 3 months on my antibiotic regiment, and I knew that at yesterday's appointment we were going to discuss the next course of action.  I thought she may want to switch one antibiotic out and add herbs, or switch to only herbs (I had hoped- and we had previously talked about those possibilities), but with how the last month has gone, she went the opposite direction.  I'm on board with her, I'm just a little surprised and... I don't know what- surprised.  

So I've been on Ceftin and Zithromax for the last 3 months.  Those antibiotics target both Lyme and Bartonella spirochetes (reminder that when one has Lyme Disease, they commonly have co-infections from the same tick bite.  Most of my neurological symptoms- which are most of my symptoms- are likely actually from Bartonella).  Now we're *adding* Rifampin on top of Ceftin and Zithromax, which is a cyst-buster.  If you recall, the bacteria morph and change forms in order to evade your immune system and treatment.  They form and hide in cysts.   So the Rifampin is to break those open... Should be a good time.  

Feels:  

I'm actually feeling okay about staying on the antibiotics- in that I trust this doctor, and she said that Rifampin is extremely effective and she can often discharge patients after using it.  I just don't feel well already, and I just took my first dose of Rifampin, and I'm just kind of scared to see how my body reacts.  My nervous system is already on the friggin fritz all the time and it does not feel good.  I had also mentally prepared myself for a 3-month course of antibiotics, and I think part of what got me through that decision was thinking that it would be over after 3 months and I could hopefully remove one, or both, and switch to herbs for a while.  So this decision to keep me on the two I've already been on for three months, and adding another one that made the pharm tech say "oh man" when I dropped it off at the pharmacy, is making me realize "alright, so clearly we're going the distance with the antibiotics..."  I was really excited to stop them- because of fear of the effects of long-term antibiotic use, because they're pharmaceuticals, and because they're obnoxious to take (with food, away from dairy, 12 hours apart, etc. etc.  And when I'm taking so many other things that have overlapping requirements or completely different requirements, I'm shoving pills down my throat all day, trying to stay on a schedule and make sure I'm taking everything at the right time, with or without the right food).  So I guess I'm disappointed, and scared, and bitter that I added two more white pills a day to my load instead of removing them, but I also still have hope that we're at least killing these jerks.  If how I'm feeling is an indicator of the amount of bacteria that are dying, then it's worth it.  

So yeah, the gentleman working at the drop-off counter at the pharmacy yesterday is fairly familiar with me.  Ty and I used to workout at the same gym as him so he recognized us from there, but now he sees me quite often at the pharmacy.  When I dropped off the Rifampin scrip, he looked at it and said "oh man...  Is this for you?"  Not really the comforting words that one wants to hear when they're not feeling well and yes, it is for me...  He asked if I was trying to "fight off an infection or something?"  Um yep, you could say that : - / 

Continued Update:  

January has been a whole different experience.  Previously, some symptoms were decreasing (and others were increasing), but there seemed to be more ups (that lasted longer), and less downs (which didn't last as long).  January has been an up and down battle, daily.  Every day has been different, although there are some patterns when you log my symptoms.  Literally one minute I may be in excruciating pain, and the next it's like it never happened (that's always a nice relief!).  Then I may be starting to feel well one moment, and get kicked onto my butt, with a "ha! There!" the next.  January has been more unpredictable than previous months.  I was starting to learn the patterns and cycles of the bacteria, and now things are so stirred up, it's all changing and every hour is a guessing game.  I guess it's a good thing that things are stirred up.  Something's happening.  Let me just reemphasize from my last post how rapidly I can go from not feeling well to well, or feeling well to unwell.  

As I read off my list of symptoms that I had over the last month to my doctor, she said "well I didn't hear one thing that's not absolutely classic Lyme," which was weirdly comforting.  Sometimes when a new symptom pops up, it scares the living day lights out of me- like noticing that it feels like I stop breathing when I'm falling to sleep, and sometimes even during the day that I get stuck in the exhale position and have to remind my body to inhale; and like shooting pains or aching pains in my hands when I do my favorite thing- play piano; or shortness of breath and chest pain when I do my other favorite thing- sing, or during any of my other favorite activities for that matter; or internal tremors and vibrations when I'm falling to sleep, which make me feel like I'm both buzzing and like there's an earthquake; or horrible nerve pain; or forgetting how to drive to a place I've been to many times, in a town I've lived in my whole life; or...  

The only not-comforting thing, is that I have a lot of heart-related symptoms.  My doctor really believes they're not actually from heart problems, but rather, from neurological problems- but we can't believe and hope for that, only to find out down the road that I had an unknown heart problem either unrelated to Lyme altogether, or exacerbated by Lyme, or brought on by Lyme (Lyme carditis).  So she's writing a referral to a cardiologist to get another EKG and an echocardiogram done to check things out more.  

My blood pressure was 90/50 at my appointment, which my doctor joked was an improvement from my average of 80/40 when she usually takes it...  We wonder if the symptoms I seem to feel in my chest and heart are a result of my dipping blood pressure- which may make it feel like my body/heart are playing catchup.  I hope so.  

In other news, we did more bloodwork last month, during which she ran my CD57 again, amongst other goodies.  As a reminder, the CD57 marker is not diagnostic, but is used as supportive evidence.  The CD57 is kind of a marker of overall immunity.  We want the number to be over 100, but our goal right now is 60.  When we ran my CD57 before I started treatment, my number was 14.  We want that number to go way up. When we ran it this time, it was 9.  Yikes.  Makes sense, considering how I'm feeling.  But she says that doesn't mean we're not on the right track.  It means my body is clearly under a ton of stress trying to fight this, and the "pot is stirred up."  Things are happening, but in the mean time my immune system is screaming for help and trying to stay afloat.  

So this graph is fun.  

• A CD57 natural killer cell level of about 200 is believed to be the area in which it is safe to discontinue use of a protocol without the risk of encountering a relapse.
• Even if your symptoms disappear, you should still continue with treatment until your CD57 reaches about 200 to avoid a relapse.  
• 200 is also the level where CD57 natural killer cells should naturally reside.

So anywho, this has been filled with sarcasm.  It makes me feel better about what's going on.  I'm feeling pretty well mentally at this moment, just not physically.  

Bring on February.  

The Show Must Go On

It wasn't until the last couple of spoonfuls of my soup this afternoon that I realized the strange position I had been eating in.  I felt so weak that I had been completely hovered over the bowl... Sitting up straight and bringing the spoon all the way up to my mouth felt both too exhausting, and too risky that it may spill everywhere before reaching my mouth, since my hands were so shaky.  Then I got up super slowly, and walked super slowly over to the kitchen to put my bowl in the dishwasher, because the act of standing up and beginning to walk brought a rush of light-headedness, tremors, vibrations, and my heart pounding out of my chest.  Such awesome timing, too, as I had been feeling well enough to get a bunch of stuff done all morning (although I could have gotten away with doing nothing all morning today if I had needed to), and was minutes away from heading out the door to go teach, which I needed to do.  Typical, Lyme...  Typical.

A lot of times, Tyler comes home from a trip and will say "how have you been feeling?"  Lately, my response has been "you know?  Not too bad!"  In the following days while he's home, he gets to deal with every episode during which I am not feeling too well, which has lead him to ask "why does it seem like you're worse when I'm home?  You say you're feeling 'not too bad' while I'm gone and then I come home and it seems like you're worse."  And then I realized, there are multiple reasons for this.

Firstly, Tyler does not make me worse- let's get that clear right off the bat.  Tyler makes everything in my world better.  One reason I may be worse, is because Lyme flares constantly.  That's what I need the world to understand.  I can be having a great minute, hour, day, couple of days, and then BAM- out of absolutely nowhere, I'm down for the count.  Sometimes it lingers for a minute, hour, day, or couple of days.  It. is. always. different.

Yes, I'm having more moments and days when I'm feeling much better than I was a few months ago.  I am SO thankful for that, and so encouraged by that.  But this cycle of telling him (and everyone else) I'm "feeling pretty well" and then clearly not feeling well at all is a giant reminder to myself, to Tyler, and to the world that Lyme is a freaking hot mess.  A hot mess.  It is so unpredictable and obnoxious and every other annoying word I could describe it with.  I also think it's easy to over-do it when he's home, because we do use that time to get a lot of stuff done that I've been putting off.  I probably do have more moments of feeling pretty well while he's gone, because I can get away with not doing anything when I need to.  When we have two days to get a lot of stuff done before his next trip and we run a bunch of errands at one time, I do not do well.  A lot of times I'm like "yeah!  It's go-time!  Let's go do this, then that, then that, then this..."  And somewhere in the middle I become absolutely useless.  I sit in the car while he runs into the store, then we get home and I crawl onto the couch while he prepares our meals.  Ugh.  Lyme is always the uninvited guest that shows up to the party, where everyone's heads turn and the band's music dies, and it just gets really weird...  -_-

Secondly, I realized that it's not that I don't have flares while he's gone.  It's that I judge how bad they are differently.  When I'm alone, I can feel like crap and no one else has to know- no one, if I don't want them to.  I can carry on my day, or not carry on my day, without it affecting anyone else, and without worrying about what anyone else will think.  I can tremor and hover over my soup and not feel like I'm worrying or burdening someone, choose not to go to the grocery store because I'm the only one who will face the consequences, etc.

When he's home, I always hope to be able to rise to the occasion, to be able to keep up- to go grocery shopping, to actually prepare meals, to be active, to get things done that I've likely been putting off while he was away...  And I've been falling short, almost every time, and it is so much more disappointing to have a flare when I'm with him than to have a flare when I'm by myself.

I've also realized that the moments that I feel really well, I am the freakin' energizer bunny- how I used to be the majority of the time- a go-getter, an over-achiever, obsessively clean and organized, on top of things, never stopping until I get everything checked off on my list of things to do, athletic...  These moments started getting pulled away slowly over a couple years, and I think it's hard for some people to remember that that was the most "normal" me.  I have finally recognized that when I have a list of things to do in front of me, and I don't feel like doing a single one of them, my body is begging me not to do a single one of them.  I get worse when I overdo it.

So my answer to you is the same...  How have I been feeling lately?  Depends on how you define "lately."  If you asked me at any moment other than "now," my answer would be different.  Two hours ago I was awesome and now I don't have the energy or mental capacity to get up and do anything.  Five minutes ago I was awful and now I feel like I want to run around the lake (feel like I want to, not like I'd be capable right now lol).

A couple weeks ago I had a gig at The Bitter End.  I felt pretty solid all day and was really looking forward to it.  A couple minutes before I was supposed to begin my set, I got the worst muscle cramps on the whole right side of my upper body- torso up to shoulder.  When you're performing, the show must go on, right?  No one's ever supposed to know if anything's going wrong in the performer's world- performance-related or not.  And I guess I kind of feel like it's the same in real life sometimes.  Thus the reason that when I'm alone I have a lot more "pretty good" moments, and when I'm not alone I feel the need to push through and put on a good show (note that in relation to my husband, I know 100% that I don't need to, that he will support me no matter what.  It's just the way I am, and just my way of trying to pretend like Lyme doesn't affect every part of my life I guess).

To sum up this "dear diary" post (apologies), if you were to graph how I'm feeling every moment of every day, the trend is that overall I am doing better.  I am.  I think I just need people to realize how broad of an "overall" that is.  If I tell you I've been doing better lately, that doesn't mean I'm "all better."  That means I'm feeling encouraged by the graph, and I am.  "Better" is comparative.  It means showing overall improvement.  Still a reason to be happy.




And if you're interested- I'll continue to be on this 3-month round of antibiotics until my next appointment at the end of January.  Then we make a new game-plan.

Lately I can just feel my nervous system is on the fritz.  I can feel when it's settled down, when it's flaring, and when it's about to flare.  They're the strangest, most unpleasant feelings of external tremors, internal tremors, internal whole-body vibrations...  So bizarre.

We'll keep pushing forward and hoping this overall trend continues!