A couple of weeks ago we noticed Josey behaved much differently - freer somehow - for a few days, and she told us she felt good, really good for the first time in several years. Then, by Saturday she was in pain, was too weak to get out of bed, and had that nasty "can't define it" kind of feeling terrible. HOWEVER - what she told me while we were away earlier this week to see her Lyme doctor again, has stunned me and given both of us hope for the future. On the first night that Josey felt better, she tells me she cried about it. Before that day, she DIDN'T KNOW WHAT IT FELT LIKE TO HAVE AN ENTIRE DAY WITHOUT PAIN. If she had pain free days as a small child, she can't remember them. She said she honestly had no idea that other people had days where they didn't hurt at all at any point in the day. We told her about these things but had not known that she didn't believe us since she had no way of understanding what that is like. Her tears were of joy from experiencing freedom from pain, and sorrow for not realizing until then that this was even a possibility.
Wow. Since those few days, she hasn't yet been pain free again but can see what the possibilities are for the future. What a powerhouse she will be when she has no pain, has energy, strength, and has all her brain power!
Per the doctor visit, one IV medication will remain the same and another changed. She will add or change two more oral medications, and we don't have to go back for three months. The doctor says Josey has done better than expected on the first round of IV meds so she will do two months on the new protocol and the third month's meds will be shipped to us.
She was able to go back to work yesterday for a few hours for the first time in a couple months, spent the night with Ally last night, and plans to go out with another friend tonight. This feels like almost normal.... Now to get her started on tutoring so she can get her GED.
There are still symptoms that haven't improved much or come and go - like brain fog, memory problems (she constantly says she told us things she hasn't or gets time lines mixed up or completely forgets things), pain that is worse or better from hour to hour, and fatigue. Realistically, we know there will be more bad days from Herxing or from general Lyme/co-infection symptoms but the glimpse of the possible future will keep Josey going for now.
Wow. Since those few days, she hasn't yet been pain free again but can see what the possibilities are for the future. What a powerhouse she will be when she has no pain, has energy, strength, and has all her brain power!
Per the doctor visit, one IV medication will remain the same and another changed. She will add or change two more oral medications, and we don't have to go back for three months. The doctor says Josey has done better than expected on the first round of IV meds so she will do two months on the new protocol and the third month's meds will be shipped to us.
She was able to go back to work yesterday for a few hours for the first time in a couple months, spent the night with Ally last night, and plans to go out with another friend tonight. This feels like almost normal.... Now to get her started on tutoring so she can get her GED.
There are still symptoms that haven't improved much or come and go - like brain fog, memory problems (she constantly says she told us things she hasn't or gets time lines mixed up or completely forgets things), pain that is worse or better from hour to hour, and fatigue. Realistically, we know there will be more bad days from Herxing or from general Lyme/co-infection symptoms but the glimpse of the possible future will keep Josey going for now.
