What to do when your life slides backwards...

Okay, the title here is a big question that I have been pondering for months now. After I do as shortened a version of "catch up" on all of this as possible, I will come back to that question. For now, I need to catch people up. After 27 months of daily IV antibiotics, which I completed at the end of September 2011, I felt a lot better. I was doing normal things like laundry, grocery shopping, cooking, and I was even beginning to start meeting up with friends again. Things went well for about a year. Then exhaustion started setting in around September of 2012. Not the typical "tired and wish I didn't have to get out of bed" exhaustion, but the literal cannot get out of bed without feeling physically drained type. We went to my doc and discussed that since I had 3 prior sleep studies which indicated narcolepsy, perhaps that was just something that wasn't going away and we treated it with the stimulant drug, Adderall.

After 5 months, basically early spring of 2013, I started noticing neurological issues returning. I was having more difficulty balancing and bumped into things a lot, my memory was getting worse, and I was searching for words whether I was talking or just writing a simple Facebook status. I was scared that it was the Lyme and co-infections (Bartonella and Babesiosis) coming back, so I prayed for it to be anything else. We ran tests on my brain neurotransmitters, meaning we tested my levels of seratonin, GABA, dopamine, norepinephrine, along with others. My tests showed some abnormal levels so we implemented a supplement regimen to help try to get the levels back in the normal ranges praying this would solve the problem. But, it had little effect and I knew my brain function was getting worse. I would get out of bed and by the time I stood up, I would forget what I got up for. I would look to see if I needed water, no, check to see if I had been thinking of getting something from the kitchen, again no. I would stand there for 5 minutes sometimes before it hit me that I had gotten up to go use the bathroom. Conversations were so hard for me, my sound sensitivity was getting worse, and I was scared. Then, in early July the seizures came back. After over 2 years with no seizures, I was having grand mal episodes again. This news actually made me feel a bit better since I know that the co-infection Bartonella causes my seizures and I know that the antibiotic, Rifampin, is what kills off the Bartonella (in my case at least). So, we decided to do 4 months of oral Rifampin and we prayed that it would clear everything up.

The Rifampin cleared the seizures up within a couple of weeks. I was so hopeful that I even went to my 20 year high school reunion in late July. My doctor and my husband advised against it, but I went anyway. Looking back, I think I was fueled by pure adrenaline from my desire to be there. My husband couldn't go with me because he was dealing with a stomach bug. I went by myself. There was a band there so I was dealing with the most noise I have heard since 2007. Luckily, they took a break for awhile and I just tried to visit with people I never get to see anymore. However, my central nervous system was going haywire! The combination of music, loud conversation, and trying to remember names and faces was so overwhelming. I know I talked too much to people at times because if I could focus on making myself talk, it helped drown the other noises out. There are some conversations I can't even recall and I am fairly certain I made weird comments, maybe said stuff that I wouldn't normally, or didn't make a lot of sense to people. When the band started back up I had to grab a close friend's hand and head out the door as fast as possible. I sat outside and took an Ativan troche (which melts under my tongue) to help with the shakes and had a severe panic attack. I had to leave, even though the fun had just started for most people. Somehow I made it home, crawled in my bed and cried my eyes out. It took 5 hours for my brain to calm down regardless of the arsenal of drugs I have to help do just that. It took a week for me to recover physically and I ended up wishing I had never gone because I felt like I probably looked like a complete nut job to some people. On the bright side, it helped showed me just how bad things had gotten and how seriously I needed to fight again.

Then, after a month or so of the oral Rifampin, I began to have extreme pain in my shoulders, back, and spine. This pain was so severe it would trigger a seizure. So, I started having seizures from pain instead of Bartonella. Nerve pain came back with a vengeance as well. As much as I hated it, I was back in bed and in the past 5 months the only times I have left my house have been to go to the doctor and my massage therapist. Rifampin is an excellent drug to hit Bartonella, but it does not hit Lyme. So, these other issues were basically the Lyme coming out in my body again and wreaking havoc. I finished my 4 month course of Rifampin and went back to the doctor to discuss options.

My case is close to a worse case scenario for a Lyme patient. My doctors traced my original Lyme tick bite to when I was 3 years old. I then had a 2nd bite when I was 29 that gave me Bartonella and Babesiosis. Despite seeing over 30 specialists, I wasn't diagnosed until I was 34. Basically, this means that Lyme had plenty of time to invade most of my organs and body tissue. So, while we knew that I was not "cured" after 27 months of IVs, we did hope we had knocked it out more than it appears we did. So, in mid January I will be getting another PICC line placed in my arm. That is a small tube that is inserted into a vein in your upper arm that feeds into the top of your heart, so it is not something that me, my husband, and especially not my doctor take as an easy decision. We knew in my case all of this could surface again, we just prayed it would not. To put things in a perspective that might be easier to understand how I feel physically, my immune system is overrun. Not just by Lyme and the co-infections, but by other "opportunistic infections". I have never had a negative mono test since 8th grade. I don't mean my tests just show past infection, they show extremely high titers indicating active infection. The last one was done in June and it was my 7th positive one. I have also not tested negative for Influenza in 5 years. No one has been able to figure out why I have run a low grade fever (99.5-101) daily for almost 4 years now. These smaller infections hang out because my immune system is a playground for them in a way. Weird thing is that I never give anyone mono or the flu, I actually don't get anyone sick, but I do catch whatever comes around! Also, you can't hit the small infections without getting rid of the larger causal infections, Lyme, Bartonella, and Babesiosis. All that said, when your choice is to continue to slide backwards and get worse, or to do whatever you can to fight, the decision will always be to fight.

For those of you who followed my blog through my first round of IVs then you will recognize the positives of doing this now versus when we started back in 2009. My heart is healthier, my pulse rate stays much more stable (rather than going down to 40 and then randomly jumping up to 200), I am now 117 lbs. instead of the sad 95 lbs. I weighed back then because I am absorbing food much better. So, while I am not near death's door like I was when I was first diagnosed, I am far from feeling nearly as well as I could be, or even as well as I was when I first stopped IV treatment. But, these positive differences in the 2009 me versus the now me are good signs for my treatment. I was too sick back then to be able to handle a cyst-buster medication (Lyme can go into cystic form where it is able to protect itself against the antibiotics) so we pray that a strong antibiotic combined with a cyst-buster medication will be very effective. Also, I was too weak to handle any drugs that target Babesiosis (which is a malaria like disease that attacks the red blood cells). We pray I can now handle some form of treatment for this. The downside for treatment is what is called the Herxheimer reaction - that is where the treatment causes your symptoms to flare and get a lot worse before they get better. So, there's always the chance that I have to go back on oxygen, or that my pain will be more intense, or my neuro symptoms even worse. It's the price you sometimes have to pay for treatment. Also, with Lyme you never know which antibiotic will work for you. Each patient has different outcomes even if they are treating the same bacteria with the same antibiotic. In short, what works for some does not work for all. This, plus a huge lack of real research into this disease, means that treatment is a guessing game when it comes to choosing what meds to use and when you know whether they are working for you. It's uncertain and uncertain can be scary.

Now, scary brings me back to what do you do when your life slides backwards. You get scared. You wish things would change. For me, I wish things were "fair" and that after years of battling, I could be well. Yet, none of that is helpful. My brain doesn't work right so I get overloaded with anxiety and this is problematic when I am trying to be rational and calm about medical decisions. Yet, what eases this is knowing that fear is not from God. God has been seeing me through all of this and He will continue to guide me, even if what looks like sliding backwards to me is just the opposite to Him. It could be that I had to give my body time in order for my absorption issues to get better, or to rest my heart, and that now He knows it is a good time for my body to try stronger meds and treatment protocols. I just wouldn't have done it had it been up to me and my health hadn't declined so rapidly. But, it could be that God has a much better plan for my health than I was willing to fight for. I was just fighting to not feel like death...maybe His plan is to give me a much healthier life after this than I had dared hoped for. So maybe what looks backwards to us is actually very much forward motion to God.

I know this has been long, and I apologize, but it is hard to summarize what all has gone on in 2 years. It is also hard for me to be concise when I spent most of my time writing this searching for the right words to use because I cannot pull them out of my brain easily. I do want to add something else that God laid on my heart when I was talking to Him about all of this. He gave me the thought about the difference between the words "deserve" and "accept". We often find ourselves saying that we deserve to take that nice vacation, or we deserve to buy a nicer house or car, and what do we give as our reason? We always say that we've worked hard for these things so we deserve them. Then there is the flip side when we think we, or someone else, don't "deserve" something hard or difficult in our, or their, lives. This brings me to the word "accept" or even "acceptance"...this is almost always used when something bad does happen in our lives and we find ourselves saying we are trying to accept the bad news, or accept the obstacles we are facing. Here's my thought on this. If you truly believe Christ died on the cross to pay for your sins, if you know that even when we turn to Him we are still such imperfect sinners, well, can we truly say we "deserve" anything when we look at it that way? Or should we all start realizing that we should accept everything in our lives because we haven't done anything to deserve God's blessings or even His love. He gives His love unconditionally, thankfully we don't have to "earn it" or we would never "deserve it". When good things happen in our lives and we are able to take a nice trip or buy a nice house, shouldn't we accept those blessings with gratitude, thankfulness, love, and with the utmost humility? And, when the bad things happen, and they eventually happen to all of us - just in different ways, shouldn't we accept those things with the courage and strength God gives us along with unwavering love and the CERTAINTY that God can work all the things we perceive as "bad" to His GOOD? So, as it looks like things are sliding backwards in my life right now, I trust God sees the direction I am heading as forwards. As much as I have those days where I think that awful phrase, "I don't deserve all of this!" or even, "God, how can I just accept all of this?", I am choosing to see that I truly don't deserve anything good or bad. I am just thankfully accepting all that God gives me in this life because He only gives His children good things. He didn't make me sick, but He has given me the strength to fight for this long and I know He will carry me through the hard times as He has always done. So, if you are reading this and going through a period of many blessings, accept them and humbly thank God for them. If you are reading this and going through trying times, accept them and call on God to help you through them. He will. Only through Him can we do more than we thought possible!

"I can do everything through Him who gives me strength." Philippians 4:13 (NIV)