It's been two weeks off the IV meds and one of the strong oral meds for Babesia. I thought being off the IV meds would help me bounce back to my normal Lymie self, but I was wrong. I'm still rediculously exhausted and don't do much beyond walking the dogs. These past 10 years, July has been notoriously hard for me, Lyme-wise. The heat makes my symptoms so much worse.
My doctor instructed me that if my headaches return, to go back on the oral medication for Babesia. So far, I've only had hints of headaches but other symptoms have come back: joint pain, POTS (Postural orthostatic tachycardia syndrome, basically when I change positions my heart rate shoots up and I almost or will faint), shortness of breath and more. I know this is Babesia. Gone this long untreated (8 years), Babesia is really hard to eradicate. Although none of my symptoms are as severe as they were last year, they are still there, none-the-less.
For giggles, I went through my monthly spreadsheets to count all the medications I've been on since beginning treatment. Twenty-five medications in two years. Two of them for the blood clot I had in March and three of them to offset other side effects that the Lyme medications can cause. So more or less 20 prescription medications just for Lyme disease and co-infections. That's not counting the massive amounts of anti-microbrial herbal tinctures to kill infection and supplements to support the immune and detox systems that I also take. That may seem like a lot for so little gain, but I knew going in this was going to be a hard long battle. Treating Lyme is definitely opening up a can of worms. You do feel worse for a very long time before it gets better. I've read about and met people who are recovered going about it the way I am so none of this is surprising. But it's still no less shocking and daunting day after day.
Mr. Wild Dingo has been home on break this week so I've been able to pawn off the dog walk on him a few times and we've also did one family day hike together. It always helps having him on the walk so I can go very slow. The dogs especially love it when we go out together. Juno loves having her own person. We'll get out on one more before he goes back to work.
Lately, I've been in shock over how drastically our lives have changed. Sometimes, I still lose track of time and memory. Yesterday I forgot when we started our landscaping plans. So much time has passed and we had to put a lot on hold due to my illness, that I couldn't remember what year or month we actually began the engineering documents. In the next breath, I couldn't remember if Mr. Wild Dingo had already brought me one of my medications that I asked him to get for me. It doesn't matter if I'm trying to remember something two years ago or two minutes ago, it's all a blank. Time just sort of rolls together in one big mush.
I think that's pretty much how July is going to pass.
Your post leaves me virtually speechless. It's astonishing what you have to endure daily. I wish your recovery would make that turn, when it's obvious you are headed in a positive direction.
Kim took the words right out of our mouths. We wish we could beat that Lyme disease to a pulp!!!
Woos - Ciara and Lightning and Mom
Mr. Wild Dingo is a hero. And so are you!
What Rottrover said.
"Like beating my head against a fog wall " introduced me to you a few minutes ago. I've had Lyme for 9 years but only one MD, a holistic practitioner, concedes that. He and I are treating me herbally. I have no joint problems and the only music I find intolerable is the almost subliminal background crap in radio or tv ads. I either cannot detect an odor, the most common problem, or I am supersensitive to an odor, or I hallucinate odors. The neurologist says the latter is a form of a seizure. And an EEG shows problems right temporal. It is very frightening to be unable to trust one of your senses. The acting out of my dreams probably has the most potential for causing physical damage, especially throwing myself out of bed, with osteoporosis no less. There are a whole bunch of other symptoms too, all neurological and all come and go.
It was so helpful to learn that I am not alone with Lyme sans joint problems since that seems to be a major deterrent to the diagnosis