Relapses

I've had a few relapses since my terrible week I had about a month ago. Thankfully they haven't lasted as long or as terrible. But still, it's scared me everytime it happens. The first relapse happened after I had started a larger dose of the antibiotic Levaquin. The pattern seems to be that I have relapse symptoms within 48 hours of starting a new medicine or increasing the dose. The first time it happened, it hit me fast and I was sitting downstairs watching tv. I felt hot and a wave of nausea and I felt dizzy. I remember trying to get myself upstairs to my bed without falling over or passing out. I laid in bed for a bit with a fan blowing on my face, then when the symptoms were continuing to become stronger, I stumbled (almost in some sort of dilirium) to the bathroom where I was able to get my clothes off (very uncoordinated limbs) and get into a cool bath, where I then fell asleep and woke up a bit later feeling a tiny bit better. Still, the next few days afterwards, I did not do anything because it scared me so bad that I had a relapse. I did not want to have any more relapses. I explained this reaction to my doctor later in the week at my appointment and he decided to pull me off this particular medication (as it was also causing me to have tendinitis in my joints). He was again suprised at my reaction as he had been when I came in after my week of Hell. I seem to stump him a bit when it comes to how my body reacts to the die off reaction of Lyme and Bartonella (the two bacteria that are being killed by the antibiotics). He put me on a new antibiotic Rifampin (I'm also currently on Minocycline) and gave me more pain and nausea medication. Within 48 hours of starting the Rifampin I had a terrible migraine that just did not seems to go away (and my usual pain meds for migraines didn't touch it), it would abate at times and then come back in the evenings almost everyday throughout the rest of the week. As this happened, I also was having searing pain in my neck and back. I went to my chiropractic appointments and my vertibrae seemed to be mostly alligned, so my chiropractic Dr seemed to think that the bacteria is most likely burrowed into the fascia (tissue around the spinal cord) and slowly making its way down my spine as it dies off. Doesn't that just sounds peachy? Ha! Sounds awful to me actually, but makes sense. He's had a patient in the past who had Lyme disease and showed similar symptoms as she went through treatment for Lyme. Later on, I was staying at my Sister's house (only 30 minutes from my in-laws) and continued to have severe back pain. I was trying the best I could to handle the pain, but I was having to take more and more pain meds to just get my pain to lessen just a little bit. I felt mentally as if I was about to break. I was trying everything I could to distract myself. I was trying to watch movies (but my head and eyes were hurting, so watching and listening to anything hurt me more, laying in bed made me continue to feel the pain. At one point I went and stood on my sisters balcony (she lives on a beautiful lake) and just looked out at the water and breathed in the fresh air, that helped some, but I continued to suffer greatly. My sister used Aromatic oils and rubbed them into my back, which also seemed to help for a bit and I dozed in and out of a nap for a few hours, but still the pain would return. So I decided to call my Lyme doctor on his cell (which he'd given me weeks ago and told me to use it, but I never had). He was again suprised at my reaction, gave me instructions on how to get on top of the pain rather than "chase" it as I was currently doing. And I have also decreased the dose of the Rifampin for the time being. As long as I stay on top of my pain with pain meds (large doses) I do ok. But I've had to now set alarms every 4 hours to make sure I don't miss a dose. If I do, I certainly pay for at least half a day until meds kick in and I feel on top of the pain again. He started me back on a medication called Neurontin to help with nerve pain, but unfortunately this med makes me tired and groggy, so I don't like it. But I will stay on it for now till my nervous system calms down.

Yesterday I had another relapse. I had been in bed all day for the past few days and I noticed some muscle twitching, hot and cold symptoms, and a few other symptoms creeping back in. So my mom gave me IV glutathione (which helps combat the severe symptoms of the die off reaction). Everyone left to go for a walk and while I was alone, bam! I was hit suddenly with severe symptoms again! All of a sudden I became extremely shaky, hot and sweaty, my heart was beating rapidly and I was dizzy and nauseous. I thought "oh crap!" and got myself up and to the bathroom and decided I'd sit in cool water again. Since I was alone and didn't want to pass out without anyone around, I called my husband on Skype and he stayed with me, talking to me, while I cooled my body down in the bathtub. I continued to have symptoms the rest of the night and even today I feel some (shaky, muscle twitching), but they lessened with the cool bath. So at least I know now that if I can get myself into cooler water, I can get symptoms to lessen when I have these relapses. But it's still very scary for me, and when this happens, I can't help but feel so frustrated because I feel as if I'm taking one step back in recovery instead of moving forward. I lose hope for a bit and then I try my best to gain it back and continue to think positively as much as I can. My treatment is going much slower than any of us (including my doctor) thought it would, but with my reactions I've had, we have to take it very slow or I will end up in the hospital again. One thing is for sure, these reactions show that I definetely do have Lyme and the 3 other co-infections. If I didn't have it, I wouldn't be having these reactions to the antibiotics. So in a way, it can be a blessing knowing what I actually have. I just need to keep myself strong mentally and emotionally while I endure through the worst of it all, and as I also learn to really closely listen to my body and what it's telling me. That is definetely a challenge! But rest assured, I'm still hanging in there! I continually feel so blessed to have my family surrounding me and helping me, I know that I am extremely blessed, as I know there are others out in the world who do not have this great blessing. I'm glad I'm not alone in this extremely difficult trial.