Lyme Log: Plans and Progress

Recently I posted about the four fronts we are fighting medically. So far I have updated on one front: the Autonomic Nervous System issues. I said that I would continue to update on each front. So, today it is time for an update on the world of Lyme. If you are confused by the treatment, the progress, and all that jazz...I hope this post will help to answer some of your questions. 

What medications am I taking for Lyme disease, what kind of doses do I take, and what does each one do exactly?

As you can see from the pictures, I'm on a lot of medications. Four of them are specifically related to the Lyme treatments. My poor Mom hates doing pill packs, so she tries to do as many weeks worth as possible to avoid having to do the chore too soon again! I feel badly that she has to do this chore, but I just can't sit up to do it yet.

The Lyme meds:

Bicillin:  Bicillin is an antibiotic (basically a long-acting penicillin) given by injection. It comes in syringes with 1.2 million units of medication. I am currently receiving one third (or 400,000 units) weekly. Bicillin stays in the body up to one month at a time. I chose the Bicillin for several reasons and have been taking it since April of 2008. Bicillin targets the muscles, joints and many organs including the heart.

When I talk about 'shot day' or crashing after my shot, I am referring to my Bicillin injections. I would like to be able to increase this medication, but I still get so incredibly sick after my shots. It's crazy how different I can feel from one day to the next. I usually get a shot on Mondays or Tuesdays.

Zithromax:  Another antibiotic. We added this antibiotic in last fall. Zithromax targets the Central Nervous System and can be helpful for targeting symptoms such as cognitive problems, difficulty sleeping and depression and anxiety.

I am currently taking Zithromax (250 mg) two times a week. It stays in the body for up to two weeks. I started at 1/2 tablet per week and just increased to two tablets weekly (one on Sunday and one on Thursday). 

Plaquenil:  This a very old medication often typically used in patients with autoimmune diseases. However, it is also used in patients with Lyme disease to deal with several aspects of the disease. It can help with pain. It is also thought to work synergistically with some of the antibiotics. It may also help with other tick-borne illnesses.

Currently, I am taking 1/2 of a tablet (100 mg) twice a week, on Sundays and Thursdays along with the Zithromax.

Malarone: If you have been or are going to a country where malaria is prevalent you just might know about this drug. It is an anti-malarial medication. In Lyme patients it is used to treat another tick-borne illness called Babesia. As I have discussed in earlier posts we do not know for certain whether or not I have Babesia, but we are treating me as if I do. 

Most Lyme patients are typically infected with more than one tick-borne illness--not just Lyme disease. We try to use a variety of medications and antibiotics that will treat me for all possible tick-borne illnesses. Many of the antibiotics do not target Babesia, so it is important to add another medication into the mix.

I am taking the pediatric dose of Malarone, which is 1/4 of the amount in the adult dose. I take one tablet daily.

This may sound like a lot of medications. But in fact, it is a very small amount when compared to what is typically used to treat Lyme disease. We would like to be more aggressive with the amounts I take, but my ANS does not tolerate it. So we are going as quickly as we can without causing me to have to stop treatment.

Currently, I am focusing on increasing the Zithromax. Since adding in another dose per week I have definitely been feeling worse and the midodrine has not been as effective. (We may have to tweak that medicine now also.). I am glad I went on my two mini shopping trips before I increased the Zith!

After my last phone consult with Dr. Lyme at the end of January, we decided on the following plan:

1. Increase the Zithromax to 250 mg TWICE/week
2. Increase the Plaqeunil to 1/2 tablet every other day
3. Increase the Bicillin to 600,000 units (1/2 of the full dose)/week.

I am starting with the Zithromax because I feel that I want to target the CNS symptoms of sleep, depression/anxiety, problems with concentration.

I have to admit that since adding in the Zithromax I'm a little more down because I don't get the same 'break' that I used to get on the weekends between shots. Now, I'm starting to feel sicker over the weekends than I had been feeling. Also, we can expect that the Zithromax may cause me to herx in ways that stir up the symptoms it is trying to treat--so that could mean problems with sleep, concentration, anxiety or depression.

Have I made any progress? 

This is always a very, very, very difficult question to answer. With the combination of the midodrine and the Lyme treatment, I am finally able to say that yes, I am making progress slowly but surely.

When Mom and I watched the movie Under Our Skin, one of the patients profiled said that it was not until three years into his treatment that he really started to see progress. That is about exactly when I began to notice changes--so I found his story very reassuring. 

One reason that it is so difficult to judge progress is because as soon as I reach a plateau or a point where I am not getting so sick from the medications, that is a sign that I need to push ahead with higher doses so that we can continue to kill off the Lyme as much and as quickly as possible. So, as soon as I catch a little break, it's time to forge ahead with more treatment.

What sort of changes have I noticed?

I am starting to really notice some changes in my body which I think, are in large part, due to the bicillin b/c my muscles are much less tight and sore, my neck pain is improving (I especially noticed this when I was able to play with baby David during his visit), I no longer have trigger points that bother me at night, and I am able to tolerate massage much more than ever before in areas that previously would have created an ANS flare (neck, back, spine). The improvements in neck pain have made a big change in quality of life--but still have a LONG ways to go.

When B, C, and D were here I made a comment one night at dinner asking if my mom had noticed that I hadn't been complaining of neck pain at all. She sighed a big sigh of relief and said 'Let's keep it that way! Knock on wood.' All of us--me, Mom, Britt, and Carrie--reached for the table to knock on it. David watched us intently and tried his darndest to imitate us--knocking on his plastic high chair!

Often times I would wake up early in the morning and toss and turn until I got up because of the trigger points on my hips and shoulders. First, the hip pain went away. Now, just in the last few months the shoulder pain has subsided. I no longer find myself waking up from the trigger points or unable to get back to sleep because of them. 

I would just keep switching sides hoping to get comfortable and I no longer have to do that. 

I would even wake up with my ears hurting! This made no sense to me (and still doesn't). All I know is that between my ears, shoulders, hips and neck hurting I was always uncomfortable. My ears don't hurt anymore--outside or inside! I can lie on them comfortably and I can wear earplugs without pain now.

Interestingly I have also noticed that I no longer feel the need or urge to crack my neck, back and hip as much as I used to. This is a huge relief to those around me, especially Mom. It's really horrible sounding--I've been doing it since high school and it just got increasingly worse over the years. I have read that people with Lyme disease are 'crackers' and often crack their necks and backs a lot. I would wake up needing to crack all of these things right away--and would do so many, many times throughout the day as the pressure would build up and I would need to do so to get relief.

I still crack my neck and back, but rarely my hip. And I crack my back and neck much, much, much less frequently! Yeah!

My neck pain continues to be my most frustrating issue in the pain department. I still need to use both ice and heat, and cannot lie on my side or sit in very many positions comfortably.

During massages, my muscles feel completely different than they did a year ago. I will write more about this in a post on massage! :)

When I doubt whether the Lyme treatment is working or if Lyme is the correct diagnosis, these changes help confirm our decisions. There is no other way to explain why, after all of these years, these symptoms have finally changed and improved so much. The ANS treatments would not in any way change my pain or muscle tightness. 

It is also impossible to know how much the ANS symptoms have improved as a result of the Lyme treatment. We don't know if I would have responded as well to the midodrine had I tried it even a year ago. The fact that I do not have the ANS problems from massage that I used to have is also telling.

The changes are in some ways big, and in some ways small. They are big in the sense that my body does feel very different, but they feel so small in the sense that I have so far to go and they have not resulted in a major change in functioning. All I know is that they are changes in the right direction.

How long will treatment last?

This is the million dollar question. If we had an answer, it would make things a lot easier! I'd know where and when this marathon was going to end. 

In short, as long as we seem to be making progress or at least maintaining the progress we have made, we will continue treatment. 

So far, I have been doing treatment for a little under three years. I started in January of 2006, and had to take a little break because I got so sick initially. Since restarting antibiotics in early spring of 2006, I have not stopped treatment. (This is a good thing!) 

Many people with Lyme disease require years of treatment. I'm not trying to be dramatic or negative here, just realistic and honest. I also am trying to frame where I am at in the treatment now with how long it can take to improve. It may be necessary to use antibiotics or other treatments throughout my entire life. This is an unknown quantity. And I have to try very hard to focus on the now.

I hope that this blog post has helped to clarify what has increasingly become a very confusing medical journey (just look at those pill packs!!!). 

Blessings,

Emily

P.S.  A note about embedded links in my blog.  Thanks to my friend, Sarah, whom I just reconnected with through Facebook and is a fellow PWD and classmate I now know how to embed links in my blog posts! Yeah! So, anytime you see a hot link you can click on it to get more information. In this post I have embedded links to previous posts about the Bicillin, Zithromax, midodrine, etc. Hopefully this will make reading my blog a bit easier for you. This way when you think: What is midodrine again? Or what is a herx again? you'll be able to click on the word and go to a previous post on the topic.

Also, Sarah's blogs are listed on the right-hand side of my blog page--Team Coco and Mayday Productions. They are fantastic, powerful, and also fun (her service dog is Coco and a perfect photo subject).

Photos:  Pill packs. Yes, I take this many pills a day. It's getting out of control. We can barely fit the meds in the packs anymore. My mom likes to do as many  weeks as possible when she gets to doing this chore!