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[norcalmom]

Orlon - thank you for replying.

 

When I use the term exacerbation - what it looks like in my child it this - he gets a cold. Within a day (or even a couple day before his cold) he goes from having 2 symptoms, which are not that severe, to having 8-10 symptoms, most of which are very severe. He will stay that way for 2-3 weeks, at which point, they will start to decrease in severity. until he returns to "baseline" or a new "baseline" of 2-3 symptoms, and the severity may or may not be the same as his old baseline.

 

So - when you say "flare" what does that look like - she adds symptoms over a few weeks or months, or is it almost overnight?(that's what happens with pandas kids...in 2-3 days you can see it all back)

 

When he went on antibiotics, the severity and duration of exacerbation were both decreased, but still there. When he got IVIG - the severity and duration were GREATLY decreased (so that exacerbations only last as long as the cold..days not weeks). But unfortunately for my son - he is still having exacerbations when he gets ill, and most unfortunately, his baseline of symptoms is no longer getting better and better (which is what initially happened after IVIG)..his progress has stopped, and his baseline is bad enough that we are considering another IVIG. Although still much better than his prior to IVIG baseline. I just don't want to see it go all the way back to that again.

 

Its interesting that her antineuronals are all off the charts, but Cam KII isn't that high.

 

It sounds like you are in the hands of a good LLMD. I have read about the pituitary involvement in Lyme...(and how improved people get once that is addressed). I hope you daughter is on her way back to heath. Its such a horrible disease - my best wishes to both of you.

Edited March 12, 2011 by norcalmom

[Orion]

Orlon - thank you for replying.

 

When I use the term exacerbation - what it looks like in my child it this - he gets a cold. Within a day (or even a couple day before his cold) he goes from having 2 symptoms, which are not that severe, to having 8-10 symptoms, most of which are very severe. He will stay that way for 2-3 weeks, at which point, they will start to decrease in severity. until he returns to "baseline" or a new "baseline" of 2-3 symptoms, and the severity may or may not be the same as his old baseline.

 

So - when you say "flare" what does that look like - she adds symptoms over a few weeks or months, or is it almost overnight?(that's what happens with pandas kids...in 2-3 days you can see it all back)

 

<snip>

 

My daughter said it has a lot to do with timing... flares are roughly every 4 weeks, partly because Borrelia burgdorferi follows the host's estrogen cycle for it's life cycle. Sometimes she feels as though she is coming down with the flu, but it never really materializes. (In fact she has not had a cold or the flu in 5 years). Sometimes she complains of a sore throat- but that is more of a nerve problem than a throat infection. The achiness, migrating joint pain, and brain fog increases. Oddball symptoms show up again for a few days.(sometimes there can be symptoms she hasn't had in months, for example a headache, or ataxia), We wonder if it is a general worsening of her condition, but then after several days, it all clears out, and usually she is a bit better than she was before the flare... only to repeat over again the next month.

 

It helps to jot down notes daily in a planner. It makes it easier to see trends or patterns. But usually you don't realize it is just a flareup until it is over and you can review things with 20/20 hindsight.