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.
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