Lyme Log: Play. Pause. Stop. Rewind. Play. Pause...Leaves Us at a Transition Point

I've been avoiding writing a Lyme update. Somehow it seems easier, no matter how sick I am, to distract myself in a world writing about other things.



Still, I'm long overdue to update you all on what is really going on in my life medically. I think it's easier for me to articulate how I feel about Hillary Clinton for president than it is for me to articulate all of the health stuff! So, please bear with me on this blog entry! I'm hoping that by putting the health stuff out there I will feel less immobilized in other ways. For example, I find that I cannot even start an email to someone because it's so hard to answer how I am or to say what is going on health-wise. I'm not sure that makes a whole lot of sense--but the only place I'm not immobilized in my life right now by the stuff going on is through my blogging/writing.



After two years of treatment and 338 little minocylcine pills later, we find ourselves at a crossroads in my medical treatment. As I write this blog, I am anxiously awaiting emails and phone calls from various members of my medical team. I've 'called in the troops', as I say--Dr. ANS, Dr. Lyme and my new PCP--to work together to help create a new, and possibly more hopeful or successful treatment path.



My parents and 'Mommy' Bev have been walking me through the emotions and the next steps to take. Bev, a Lymie herself, is able to calm me down and to help me see outside of my box when I am in crisis and look at the options available to me. Without her help, I would not have the clarity I had in being able to really ask the doctors for what I wanted and needed.



The past six months have been especially challenging and difficult. I said in my entry acknowledging my depression that I was acutely aware of the trigger for the depression. Well, the trigger was, in many ways, my December phone consult with my Lyme doctor. However, my mood had steadily been going downhill in October and November as I worked to increase treatment and felt lousy all of the time.

The other day our neighbor, Anne, stopped over.



She said to my mom: "Does Emily feel as bad as she looks?"



Yup, that about sums it up. At least the two are congruent. Usually it's "Oh, but you look so good!" It was almost a relief, and somewhat validating, to know I looked the way I felt. Anne really can crack me up! This is pretty much how the past six months have been, without any relief.



During the summer, we started to feel that we were seeing some progress, however glacial in nature. In order to really and truly kill off the Lyme I need to continue increasing my doses of antibiotics, make myself sicker, and hope that I see 'windows' in between of feeling better.



I have not had a 'window' of feeling any better since October. I'm tired and frustrated. I feel like I am pushing so hard, working so hard, and making myself so sick without seeing any progress.



Catching up:



Let me explain a bit why I chose the phrase Play. Pause. Stop. Rewind. Play. Pause.



Play:



During the months of October and November I chose to increase my dose of minocycline. At this point I continue to take no more than about 5 of those little 50 mg pills a week, which is a teeny tiny dose. I increase in increments such as taking doses as follows: 2 days of mino, one day off, 2 days of mino, one day off, 2 days of mino, etc. Then, an increase would be to start taking the following: 2 days on/one day off/3 days on/one day off/2 days on/one day off/repeat. Cousin Jan: I bet you can imagine what a joy this is to keep track of in those pill packs!



Still, just adding that one pill in over the course of several days makes me very, very sick.



I had the attitude that if I made myself really sick through the months of October and November, I would be done herxing by the time all of my visitors arrived for the holidays. Instead, six weeks into the second increase, I found myself even sicker--pajama day after pajama day (and not the good kind of PJ day that I love!), weak, ashen in color, no appetite, and all of the other miserable ANS symptoms, fatigue and pain I experience.



In mid-December I spoke with Dr. Lyme. He suggested that I return to the dose I was on when I saw him in September and was doing 'well'. He said that I had been overzealous in my efforts to increase the minocycline. Dr. Lyme hoped that I would return to the baseline level I was at when I saw him in September while also continuing to improve slowly on the lower dose.



After this phone consult, I felt so incredibly sad and deflated. I began to feel a sense of wondering how I could EVER get better if I can't increase the medication successfully. At the rate I have been progressing over the past two years (and sometimes it's hard to see that there has been any progress) it's difficult to see how we can get me better.



My dad was here that evening for dinner and as he came to tuck me into bed, I began to cry out in pain. I sobbed, "I just want this to be over for all of us. I was just trying to get better faster. And it's not working. I just want to get better." Of course, my dad lost it too. One of the most painful parts of this illness is watching what it does to my parents. I have never seen my dad cry as much as I have since I have been sick. Often, my parents both suffer quietly, rarely letting on how much pain they are really feeling. Still, I know it's there and how deep it is. And this is overwhelming.



Stop:



By mid-December I was so sick from the mino and the increase that I ended up taking a week off of the medication. This is the first time since starting the mino that I have had to stop (unlike the first go around with the doxycycline that landed me as sick as I was post-GB surgery). Then I did a week at every other day just to ease my body back into the medication.



Rewind. Play:



I resumed the dosing schedule I had been on in September--which felt like a HUGE step backwards. Over the next two months I did not return to any sort of baseline or level of functioning I had experienced over the summer at this dose. I neither regained my previous level of 'well-being' or saw any progress forward as we had hoped.



Mix this in with the following factors: feeling too sick to enjoy my holiday visitors; cold, dreary winter weather; family stress (which is too personal to blog about); the beginning of a new year which will mark my 10 year anniversary of getting sick. The result: A recipe for increased depression and anxiety.



So, my depression really began when I pushed so hard and saw no improvement, when I began to feel that no matter how hard I was trying I wasn't getting anywhere and when I began to wonder if we were even on the right track. The mind can really go into spin cycle! Then my mood has been fueled by various other factors.



Forward:



In February, after no improvement or return to baseline, I made the decision on my own to try an increase in the mino again. What did I have to lose? I already felt like crappola! I ended up with another awful herx. I am also beginning to feel that the mino is too hard on my stomach because I end up so nauseous, sick to my stomach and in excruciating pain that I cannot eat. When jello sounds good to me, I know I don't feel well! Ugh. The mino feels like it is ripping up my insides!

On February 21st I had another phone consult with Dr. Lyme. This time he felt that perhaps I had not been making myself sick enough to make progress in treatment. This was, of course, the opposite of what he had said in December.

The conversation was frustrating because we spoke for 20 minutes, at which point I thought that we had agreed to try a new antibiotic, and then he took a call from another patient for a phone consult. After that, he called me back, but I felt we had lost our train of thought and where we were at in the earlier conversation.

I came out of the conversation frustrated and confused. In the end, Dr. Lyme wanted me to stay the course on the minocycline because he believes it is working (which, in reality, in some sense it is because it is still making me this sick). I was pushing back at him to change paths because I feel that I want to see if another medication will help me to progress more quickly, even if it does make me sicker.

I began to question everything: Do I really have Lyme? Can I ever get better? Should I be getting a second opinion? Where do we go from here? What antibiotic do I want to try? These are the times my Mommy Bev walks me through each step with patience and wisdom. My parents and I are so enmeshed in the situation (and clueless about Lyme on so many levels) that, for me, having Mommy Bev is a lifeline.

What I think that I want is to try a different antibiotic, called bicillin, in the form of shots. It's a bit more aggressive, but not as aggressive as IV antibiotics. I am feeling that if I don't try something different, I will always wonder, "What if I had tried such and such? Would I have gotten better faster?" I am so committed to getting better and fighting this...but sometimes it feels like fighting one heck of a riptide. Should I just let go and see where it takes me? See where I end up on the shore? Am I pushing too hard against the Lyme or not hard enough? As you can see, the last few months have left me feeling shaky and scared on the medical front. Finding the balance between letting go and pushing back is a difficult one--and patience, as always, is the most important thing to try to maintain.


Rewind:



I am now back on the baseline summer/September dose while I wait (patiently, of course. Ha!) for the doctors to coordinate things.



Pause. Wait for a transition. Choose the next road.



So, where does this leave me? Waiting.



I have backed off of the mino in hopes that I will at lest be a wee bit less sick than I have been.



I have emailed extensively with Dr. ANS and we are also planning to have a phone consult. I have also written a letter to Dr. Lyme and Dr. PCP. Dr. ANS is planning on consulting with Dr. Lyme. Hopefully, all of these actions and acts of coordination of care will result in a decision about where we go from here. There are many options to weigh. No answer is easy. And no choice guarantees anything. We have a lot to decide and discuss.

I have a deep trust in Dr. ANS that I do not have in any other doctor. I feel better simply having him 'working on things' from his end and not trying to figure it all out on my own. At this point, I do not have the knowledge to make the best decision for my care, so I am letting go and waiting to see where he thinks we should go from here. I have a sense of relief in knowing that I'm not in this alone. I wish I could contribute a million dollars to this doctor's research funds! He's that amazing.



I will not go into the details here, as I have written enough. But when I do have a sense of where we go from here, I will be better about trying to keep you up to date!



My first visitors of 2008 arrive this upcoming weekend. Carrie and Britt will be here for a three night visit. I need the emotional and spiritual lift of this visit more than anything right now. So, I am praying that I will not be too sick to enjoy at least a good part of it. Carrie is six months prego and this will be our last all girls weekend before the baby arrives. I've only met Britt once before for about 10 whole minutes, so I want to be able to get to know her and enjoy her fantastic cooking. She is planning to be head chef and Carrie will be sous-chef! How lucky am I??? We are going to be bums and hang out in our PJs I hope! :) I really LOVE 'good pajama days'--the kind you CHOOSE to stay in your PJs--not the kind when you are forced to out of feeling to crappy.



I thank all of you for your continued support and understanding while I try to find my way again. Trying to find my way emotionally, spiritually, and medically is taking all of the energy I can muster. I apologize for all of the unanswered emails in my inbox. Each message is treasured, even if it is not answered in writing. Right now, I am using my blog as my primary method of reaching out and connnecting with others. You're support of my latest blogs has been quite remarkable!



Blessings,



Emily