I'm just about two months out. Here's what's been going on...
The first month was difficult. I had the same amount of pain and felt frustrated. A few weeks ago, I got a nasty head cold that had me in bed for a few days. I was blind-sided with volcanic emotions during this time, lots of crying, feeling angry. It was your average head cold and ended in about 5 days and was only bad for two.
My energy is up. If I had to assign a percentage, I'd say it's about 5% up on good days. I still get winded going upstairs, I can't do very much without getting tired. I still have all the same symptoms as before Infusio, plus some new ones.
Body temperature fluctuations (cold and hot extremities)
Visual disturbances (blurry, floaters, dryness, fatigue, light sensitivity)
Digestion issues (slow, constipation, loose, abdominal pain, cramping, noise, gas)
Joint and muscle pain
Insomnia (this is new). Every day since Infusio. I feel creepy-crawly before bed and have a hard time falling asleep.
Vertigo - Constant sense of feeling off balance with intermittent loss of balance. I've never fallen over, though.
Eczema. From 2006 to 2009 (pre-lyme) it covered me head to toe. I got rid of it, but it's coming back, between the webbings of my fingers. Dry, red, itchy, pustules. Eczema and rashes have never been a symptom of my Lyme. I got Lyme in 2013.
Breakouts (face, neck, shoulders, back)
Throat feeling tight
Pain in sternum
Mild air hunger
Random red rashes
My gums are FUBAR
Sleeping during the day (this is new)
My eyesight seems worse
My anxiety at the moment is less. I went from having "Call 911" panic attacks to feeling only slightly anxious. My energy is better. Before, I couldn't force myself to do anything. Now I can. I can do things for about 5-10 minutes before I break a sweat and have to stop. I've been reading, playing piano, painting, and writing. This is all great. I couldn't even read before; my eyes would get blurry and I couldn't hold a book up. Like I said, before Infusio, I couldn't even force myself to do 5 minutes of anything. Although I still need to lie down quite a lot, I don't have to lie down ALL day.
Now, it's still early days and Infusio has warned me that this is a roller coaster. I take the good with the bad. Some days I can't even play piano or read. Some days I'm in bed all day. Infusio has been sending out videos to helps us get through the first three months. They contain helpful tips on what to do and what to expect. The most recent one said I can now engage in light exercise. I will do light yoga at home.
Going out is still a challenge. I leave the house twice a week. Fridays I have my therapy sessions, Sundays we have brunch with my sister. Those both wear me out. When I come home, I have to take a nap.
So yes, things are moving in a positive direction. Note, this improvement in energy has arrived only in the last few weeks. Before that, I was pretty beat up and exhausted. The first two weeks after Infusio were grueling energy-wise.
I hope this covers it. If you have questions, please ask. I'll help as best I can.
Note: Everyone wants to know if Infusio is worth it. It's hard for me to gauge at the moment. I'm leaning yes, but only time will tell. I'll update again soon. I want to do a post that has tips for those going to Infusio. Stay tuned.