3 Years

I remember at my first Lyme appointment, my doctor told me we could have up to a two year battle ahead of us, and I remember being horrified.  Two years??  That seemed so long.  It is long.  Here we are three years later, and I just started IV treatments.  Every Lyme battle is different.  There's no one-size-fits-all, cure-all approach.  Considering the fact that we're battling not just Lyme, which is in and of itself a monster, but the co-infections Bartonella, Babesia, and Ehrlichia (which are also each their own monster), in addition to high viral loads, mold toxicity, biotoxin illness, genetic susceptibility and difficulty eliminating toxins... and the fact that I've had all this for 19 years, I guess it's no wonder it's been three years already!

In July, 2014 I was re-diagnosed with Lyme.  I started treatment that August.  It's been a hell of a three year ride, but right now I can say that I am feeling close to remission.  I'm not there, but I feel like I can see it.  

Catching Up:  

This last spring I had a pretty significant flare up though, with both old symptoms and some interesting (read: disturbing) new ones.  It was significant enough for my doctor to say he wanted to do another brain MRI to check for MS again (I may have talked him out of this for now, since we did one last September...).  He agreed that we could monitor closely for now.  Most Lyme patients have flareups in the spring time anyhow.  He insisted on starting IV antibiotics though (in addition to the 3 oral antibiotics and 3 herbal antibiotics).  After almost three years of treatment, I should have been doing better than I was at that moment, and since I was having that significant of a flare up, he said the current protocol wasn't strong enough.  

In addition, we had been and continued to do more labs, tests, etc. to check for heavy metal toxicity and anything else that could be causing overlapping symptoms and/or keeping me from getting better.  I was really reluctant to start IV antibiotics for a lot of reasons, but in the end my doctor was right.  We've avoided IV antibiotics for three years.  It was time to do it.  

IV Treatment:  

I started on IV Rocephin mid-June and am currently continuing IV treatment (this will be my 8th week).

I go in to the clinic every Tuesday to get the IV placed somewhere in my hand/arm and to do a treatment as long as I'm there.  The IV line stays in my arm for 3 days, so that I can do treatments by myself at home on Wednesday and Thursday.  It's been an interesting learning process -- definitely things I never thought I'd have to learn.  My nurse called me an IV pro the other day...  That made me feel good, and also like "how did this become my life?" lol.  It's really weird to connect yourself to tubing, have syringes and needles at home (FYI the needles are just for drawing the medication from the bottle it comes in, mixing it with the fluid, and then injecting it into the IV bag), to find somewhere to hang the bag and sit in your home while you infuse.  It's nice to be in the comfort of your home, but also less comforting to not be in the care of medical professionals while you do it.  The nurse taught me how to do everything, but thank goodness for my sister and sister-in-law (nurses) who answered so many questions for me.  Jess FaceTimed with me during my first infusion to help talk me through everything again.

At the clinic

At the clinic

At home 

I was so scared to start IV meds, because I had no idea how they would make me feel.  I figured it couldn't be any worse than anything else I'd been through, but IV meds seemed so much more intense to me, and I thought for sure that I'd have horrible herxes.  

I am amazed that I pretty much haven't herxed at all.  I am feeling so well, many of the symptoms that were bothering me before I started the IV have disappeared, and I'm probably feeling the best I've felt since starting treatment three years ago (and for the longest period of time... to me, that's a significant piece of the puzzle).  

We increased the dose of the IV meds two weeks ago, and I did feel a difference (a tiny herx, with headache/neck stiffness and such), but it was tolerable compared to the past.  Why am I not herxing terribly on this??  Honestly, I'm not entirely sure.  I think it's a combination of things:  we're 3 years into treatment, so the bacterial load is already way down; IV antibiotics are actually easier on your system since they bypass the gut; I think I'm doing a better job of detoxing and supporting kidney and liver function -- I'm pretty sure this has made a huge difference.  

In any case, I am so thankful to be feeling as well as I do.  In everything I do, I have thought to myself "thank you, God, for allowing me to do [this] again, pain free, or fatigue free..."  Big things, like going to visit Tyler in Hawaii and not being in horrendous pain or too tired to be able to do anything; small things, like going to the grocery store, or running more than one errand back-to-back...  

I definitely have a new outlook and appreciation of life and health.  I know that sounds cliche, but I've never meant it more.  Things can change so quickly, and I have the awareness that at any moment, Lyme could have the upper hand again.  I look back at how sick I was, I read my old symptom journals or blogposts and cry tears of heartache, because I can't believe that I lived that life; and I cry tears of joy, because I am no longer living that life.  I am so close, I know I am.  I'm realistic in knowing that "close" could mean many more months before kicking it, but it's far more tolerable when I'm feeling mostly well.  I seriously find joy in just going to the grocery store, because I am so happy to be strong enough to be able to do that; and to be able to walk my dog; and work out; and work; and NOT CRASH or be constantly trying to hide the fact that I'm in misery.  

Please send love and light for me, that the IV treatment continues to work well for me and that I continue to tolerate them well.  Please pray that I don't have any complications from the IV treatments, and that I continue to find renewed health and joy.

Please pray for my mama as she continues her fight against Lyme disease as well <3 She's a fighter.