It's Memorial Day and I woke up pretty early this morning without an alarm. And so far, I actually feel okay. I woke up with only mild pain and moderate fatigue. For holidays, my family usually gets together and we have a very relaxed, informal dinner. Even before cupcakes became my thing I was usually in charge of the dessert. Now, whenever I am feeling well enough, I make a few batches of cupcakes for holidays, birthdays, and parties. I haven't been able to bake for a while because this latest round of treatment has really knocked me out. Today, though, I think I'm going to try to make vegan chocolate peanut butter cupcakes.

For the last few days, I haven't experienced any tachycardia. It's possible that I am actually adjusting to Flagyl and that some of the worst of it might be over. Fevers and fatigue have been the focus of the last few days. Lately, even after sleeping 10-12 hours at night, I need at least one nap a day. Even with all of that sleep, I still spend the rest of the day in bed. 

 

I slept in until 1:30pm this afternoon. Now that I am more fully awake, I have taken inventory. So far, I am congested and have another mild fever (99.3). Again, low-grade fevers are just a part of Lyme and usually aren't cause for concern. If they coincide with cold or flu symptoms, however, that is another story. Everyone around me seems to have a cold right now; I am afraid it is only a matter of time before it comes for me. So I'm doing everything in my power to make sure that doesn't happen. Here's the plan:

1.) Avoid sick people at all costs.

2.) Start Mucinex to manage congestion. Mucus essentially lays out a welcome mat for bacteria and can increase the risk of infection. I called my pharmacist today to make sure that there aren't any interactions with Mucinex and my many medications. There aren't any interactions. The only thing I need to do is take it 2 hours away from all other medications. That means that I have to space out 5 doses of different medications today. That will take 10 hours. I hope I'll be awake for that long.

3.) Continue all immune system support and preventive measures. This includes frequent hand washing for 15-20 seconds, sanitizing hands often and before taking any medications, temporarily taking high dose vitamins (ex. Airborne), wearing surgical masks at home since my mother is sick.

4.) Fever reducers, as needed. 

5.) Rest.

All of this combined with the continuation of Doxycycline and Flagyl should help prevent infection. If it works, then I will still be able to say that I haven't gotten sick or been to urgent care once in 2009. 

This morning I woke up feeling only mild pain and fatigue. By early afternoon, however, I was in desperate need of ice packs and a nap. I anticipated exhaustion from the recent increase of doxycycline. I spent most of the day in bed napping on and off. I didn't anticipate the shock of SI joint pain that hit suddenly and stopped me in my tracks. I had big plans to drag myself to Target but quickly realized that it was out of the question. By this evening, I had a fever of 99.7 and felt pretty wiped out. This is shaping up to be a pretty classic Herx reaction. My hope is that I can use this 3 day weekend to get through some of the worst of it.

I haven't written anything in a few days because, frankly, I forgot all about it. Here's a recap of the last few days:

Yesterday marked the end of an exhausting week. I went out more than I planned to or should have. As 5pm approached, I started feeling the kind of exhaustion that is impossible to shake or power through. I went straight home, ate dinner in a hurry, and was asleep by 6:30. The next thing I knew, it was 11:30 and I was just emerging from a "nap". A few hours later, I went to sleep for another 10 blissful hours. I suppose I really was tired.

On Wednesday, May 20th I increased Doxycycline from 100mg to 200mg per day. Of course, anytime you start or increase an antibiotic you can expect to have a Herx reaction. It was not until I swallowed the second pill that I realized that I must be a masochist to increase Doxycycline while I'm still adjusting to Flagyl. And while I haven't ruled out that possibility entirely, I have a pretty good idea of why I did it. I thought about the two different effects these antibiotics have on the bacteria. Flagyl is one of the only antibiotics that can break open the cyst form. The cyst form is essentially just one or more tightly coiled spirochetes inside of a protective covering. When they are broken open with drugs, the spirochetes uncoil becoming symptomatic and vulnerable. Doxycycline can kill spirochetes in the blood stream but has no effect on the cyst form. The combination of the two drugs can be very effective in fighting Lyme. So I decided to increase the Doxycycline now to maximize the infection fighting power of Flagyl.

I have also upped my detox regimen to minimize the amount of neurotoxins in my system from fighting the infection aggressively. I alternate days with Burbur and Parsley tinctures and continue to take several hundred milligrams of Chlorella every day. 

The deep, intense SI joint pain that started on Monday was much better by Wednesday. I am still using ice packs every day but have not needed any additional pain medicine. I always worry about unprovoked pain because I am limited enough as it is. I am already so careful about controlling my movements and being as gentle as possible on my joints. When the pain is still unreasonable with all of my coping mechanisms and preventive measures, I get scared. 

Today was a bad day. It wasn't that every moment of the day was saturated with pain or fatigue or tachycardia. It was that the moments that were happened to be especially bad and, for some reason, especially sad. There was a moment of panic over the tachycardia and the fact that it may mean I have to stop Flagyl, again. The fact that if I do try to tolerate it, that I might need to go to urgent care at any moment. Because I know that I cannot ignore the seriousness of it. But I also know that I haven't been reacting appropriately. At a certain point, simply monitoring it will no longer be enough.

That was today. Tonight was a different story. After work, pain became the focus. I am almost always able to control the pain if I am able to lie in bed. I am usually able to reserve pain medicine for the times when I am away from home and need relief. This approach has served me well because I know that I can manage the pain once I get home. At home, I have ice packs and a comfortable bed and pillows to put under my knees. Only on very rare occasions have I been unable to manage the pain at home since I started extended-release morphine and then, eventually, oxymorphone. 

Tonight, however, I was startled by the intensity of this unprovoked pain and the fact that I couldn't manage it. It started suddenly. I was sitting up in bed eating a late dinner when a deep, pulsing pain started in my SI joints. It was so severe and so jarring that I quickly downed my next dose of Lyrica, a muscle relaxer, and an Aleve. All of this after I had already been using ice packs to control it. It is the very definition of breakthrough pain. Next, I shifted to lying on my side with a pillow between my knees. The pulsing returned and intensified. It would go back and forth from the left side to the right side. It was such a deep, severe pain that it brought me to tears immediately. Each pulse made me shake and tense up. They came in waves. Each wave caused more tears, more panic. I dreaded having to move again but I knew I had to. I had to go to the kitchen to get another ice pack. This time, on my back, on an ice pack, with a pillow under my knees. I managed to numb the pain enough to breath again. It was a nightmare but it is under control now. I'm not really sure what caused it. My best guess is Flagyl. If this continues, I'll have to stop it, again.

I slept terribly last night. I passed out with the lights on, in my jeans, in a really uncomfortable position. Despite my frustration with missing a decent night's sleep and the fact it is responsible for the intensity of the pain I am in today, there is an upside. Last night I fell asleep, late as it was, without the help of sedatives. I honestly cannot remember the last time that happened. 

The pain is hanging out at just above reasonable today. The majority of it is in my left hip joint and the surrounding nerves and tissue on that side. It is already prohibitive and I haven't really done anything yet. It feels like a combination of a strained muscle and a stinging pain in the joint itself. Add that to the deep growing pain-like sensation that has been hanging around for the last few days and you have a recipe for ice packs and staying in bed. 

I'm still experiencing frequent tachycardia. My resting heart rate has reached 115-120 at least once a day and has stayed there for 10-20 minutes at a time. All I can do is monitor it, use breathing to try to control it, and push up my next dose of Atenolol by a few hours. If this continues, I'll probably have to stop Flagyl, again.

Today I don't feel quite as bad as I had anticipated. I woke up early on my own. I feel pretty tired but not unreasonably so. It was a long, busy week at work and I intend to use this weekend to rest and recover. The pain, so far, is only mild/moderate. It can be hard to gauge the pain when I'm laying in bed where I feel the most comfortable. We'll see how it goes when I venture out to the pharmacy or try to do launry. I'm still taking the full dose of Flagyl, 250mg every day. The last few days, I have felt very weak. It is making things like folding laundry pretty frustrating. The weakness is one of the Lyme symptoms that started suddenly a few years ago. It hasn't improved at all with treatment or time. It only drifts back and forth between moderate and severe. Anyway, the last few days it has been especially bad.

Later in the day...I have a low-grade fever and my heart rate has been about 115 for a while now. It doesn't seem like it's going to stop on its own so I will take my next dose of Atenolol (beta-blockers) a little early tonight. The fever isn't really a problem, it just makes me feel achy and clammy.

Flagyl: A Brief History

I started yet another round of treatment with Flagyl on Thursday, May 7. I kept putting it off because I don't seem to be able to tolerate the drug at all. I finally forced myself to start it last week and things aren't going quite as badly as I had anticipated.

I have started and stopped Flagyl about 6 times over the last few months. 5 out of 6 times, I had to stop it after only a few doses because the herx reactions and side effects were too extreme to tolerate. I was, however, able to take it for nearly an entire month once.

When Dr. K  initiated treatment with Flagyl, he started it slowly and intended to have me work toward the full dose. The full dose is 250mg once per day. I was originally started on 250mg every other day for two weeks with the goal of increasing it to 250mg per day if tolerated. I was also instructed to continue on a low dose of Doxycycline, 100mg per day. I knew, of course, that starting a round of treatment or increasing an antibiotic would cause herx reactions and possibly side effects of the drug itself. I was prepared for an amplification of all or most of my symptoms. I also knew that Flagyl can be especially brutal because it is one of the only drugs that can kill the cyst form of the bacteria. I was prepared for a rough 3 or 4 weeks. I was not, however, prepared for devastation that followed. By the third dose, the following had happened:

Increased, severe muscle and joint pain. My SI & hip joints are the source of the most intense pain I experience on a regular basis. Flagyl caused such an increase that I could not manage the pain with morphine, biofreeze, ice packs, or bed rest. 

Tachycardia. Even with beta-blockers, my resting heart rate stayed between 100-120. I have been managing tachycardia as part of POTS (postural orthostatic tachycardia syndrome) for 2 years. POTS is not a diagnosis, it is really just an easy label for the low blood pressure & tachycardia caused by Late-Stage Lyme. It is really only for the benefit of the non-Lyme medical community.

The most severe panic attack I have ever had, a combination of the side effects of the drug itself, tachycardia, and the increased pain. 

Severe fatigue. I was unable to get out of bed. I could easily sleep for 14-16 hours and still needed 4 hour naps daily. 

As a result, I had to stop Flagyl immediately. After one week, I started it again. This time, I was instructed to take it every 3 days. To say that this approach was gentle is an understatement. I don't know anyone who had to start at such a low dose. 

The second round was better. I started slowly and eventually worked up to the full dose. I still struggled with the amplification of pain, fatigue, anxiety, and tachycardia, among other things, but it was manageable. Well, sort of. The full dose caused a month of pure misery. The fatigue was devastating. I was so weak and exhausted that I was wondering how I was going to be able to continue to work. The pain was intense all the time. My SI and hip joints felt like they were cut open. Each time I moved it felt like pulling at a new cut. I started using ice packs daily again. I had recently been switched from extended release morphine to extended release oxymorphone which provided incredible relief. It really changed the way I viewed pain and pain management. For the first time, I thought I really had a handle of on it. That was, of course, until Flagyl came along. I still haven't found anything that can stand up to it. 

From here, the story gets pretty mundane. I would start Flagyl, experience extreme herx reactions, and would be forced to stop it. I have done this several times. I will spare you the details of each round in this post and limit myself to only the highlights. 

I once slept for 24 hours. Yes, 24 hours. I suppose it is less a night's sleep and more a coma at the 24 hour mark. I did wake up once or twice but fell asleep again quickly. When I woke up, it was as if it didn't even happen. You would assume that I would have felt refreshed or exhausted or achy, something. I felt no different than before I fell asleep. 

I had intense PMS shortly after starting round 6. I knew that Flagyl would wreck my endochrine system at first. This intense PMS caused the most intense chocolate cravings I've ever had. I swear I was eating chocolate around the clock, sometimes as meals. I made trips to the store everyday. Sometimes more than once a day. I kept expecting the cravings to go away so I bought small amounts each trip. All that did was make it so that I had to drag myself to the store over and over again. I tried to resist because I know that sugar is off limits during antibiotic therapy. Needless to say, I didn't try very hard.

I leave out words when I write. I don't mean typos that I catch when I proofread. I mean that I leave them out completely and don't even notice it until much later, if at all. I know that neurological problems are common in Late-Stage Lyme. I know that I have trouble with short term memory, concentration, reading, and sometimes speaking. This, however, just happened recently and suddenly. I don't even know if I should blame it on Flagyl. Mostly, I find it entertaining. But when it affects my ability to write professional emails or training manuals at work, I get frustrated. 

That's all I can think of right now. I'll look over my treatment notes and fill in the gaps.