I have been on the Doxycyline for 2 days and am on Day 3 of my period. I get really sick. I have a wicked headache. I request a prescription for diflucan, b/c I know I will get a yeast infection from the antibiotics. My muscles and tender points are aching, the same places that hurt so much in the beginning of the year when I was so sick. I have taken 2 Fioricet, which were prescribed for me for this very headache, and they haven’t even touched it. I am sick for 3 days, but it is less than when I was sick before. I am alternating b/t chills and sweating, my face feels hot and I am physically uncomfortable. I still want to lie down all of the time, and particularly in the afternoon, around 4, I completely run out of steam. One positive thing is that already my heart has stopped racing. I can’t believe it, it has been almost a year since my body felt calm. I feel good for a day or two and then feel sick again, like I am cycling with symptoms. I am driving home from my sister’s one night on the highway, going 60 mph, and I have a full-blown panic attack. I am terrified. I can’t feel my hands on the steering wheel, and I feel like I am out of my body. All of the lights start to blur and I can’t breathe and I feel like I am in a tunnel. I am afraid I will crash, but more importantly that I will hurt someone else. I tell myself to breathe, and that I will be ok. I open the car windows and the cool air helps to calm my body down. I notice that my muscles are also twitching. I am struggling with sleep and I have a short fuse again. I find that the doxy makes me dizzy. I have a couple of days where I feel ok, relatively speaking and then about 2 weeks in to the doxy I sleep through an entire night. This hasn’t happened for almost a year. I wake at 9:30 am and can’t believe that it is not 4:00 AM. I feel like a human being.
I get my period, and although I feel slightly toxic, I don’t have a headache. I take diflucan for about 3 days and then notice that everything tastes terrible. I think it is either from the doxy, the diflucan or the combo of these with everything else I am still on. Water tastes metallic and food has no taste at all, in fact it is almost offensive to put in my mouth. I have cut out pretty much all sugar and only drink water and decaf green tea. I eat very simply now, it is the only way I can get food down. I’ve lost about 5 lbs, and I am not working out. My period arrives again, only 14 days after my last one. I assume all of the medicine in my body has completely screwed up my cycle. I am dreading day 3.
However, for the first time in a year, I have no toxicity, no headache and no muscle inflammation. I am almost afraid to believe it, b/c it feels so good. I go check in with Dr. Saviour and he is very happy with the progress. He is conservative though, and he says we need to be cautiously optimistic. Once again, he assuages my fears and spends time with me, never making me feel like my questions are not important. I feel taken care of and heard once again. My friend Barry comes to visit from L.A. and takes to calling me “Lymie.” That makes me laugh. I am owning it. Plus, when I forget I’ve already told him something, I tell him he needs to be nice b/c I am having a lyme fog. And if he isn’t, I will go into a lyme rage on him. Kind of like a lyme super hero. Each day I can see that I am feeling slightly better. The toxicity is leaving my body and I actually have a day here and there in which I have no pain in my body at all and I have another night or two in which I sleep through the entire night. The only residual symptom right now is this awful taste in my mouth. I have a day or two also in which I feel overpoweringly nauseated. At the end of the month I check in with Dr. Saviour again and he decides as I am doing so well I will do another 30 days of the doxy. He also wants me to wean myself off of the Lunesta and Lyrica. I am down to a ½ dose of Zoloft, so 50 mg to 25 mg. I am to be off of all of the medicine by the end of October. That scares me, b/c I am actually starting to feel a major difference in my body, and I don’t know if I can mentally handle getting so sick again. Also, at the end of the month my sister, Tammy, and I attend a local screening of the documentary “Under Our Skin,” directed by Andy Abrahams Wilson. This is a film about the devastating effect lyme disease has had on people. There are a few patients highlighted in the film. The one that hits home for me is a young woman named Mandy, http://www.underourskin.com/filmcharacters.html. They show a picture of her skydiving, something I have done, and also a shot of her in her front yard, bent over and unable to walk. It is eerily similar to how I felt when I was in my apartment in LA, at night, unable to stand up or sit down. I cry for the entire movie, as I see my own story played out over and over in the stories in front of me. I think mostly that I feel relieved and validated. Once again, I realize I am not crazy, and that I was right when my intuition told me something was poisoning me and taking over my body. I realize I have an illness that is just beginning to be understood and that as I get better, I will do everything in my power to help others. I do not want to see anyone go through what I have gone through.
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