Hi all My daughter has recently been diagnosed with Lyme and started having seizures about two months ago, they have dramatically increased. She has been in IUC for 4 days, they had to put her on a ventilator and put her to sleep to get them to stop. all of the powerful antiseizure meds did not work and she has been seizing every 30 mins to an hour. I am desperate - do you know of anything that may help? They are going to try to take the breathing tube out today and no one knows for sure what is going to happen. We had an appointment with a Lyme literate doc last week but had to cancel because of all of this - we just need to get her stabilized to be able to get her to this new doc....but the hosp wont release her if she is seizing. Any ideas? Thank you in advance, Sherry
I'm so sorry to hear about your situation. I have some experience with this situation, although have not ended up in ICU or on a vent. I don't feel comfortable giving medical advice, but if you'd like to contact me directly, I'd be happy to tell you more about the meds that I've tried, what I'm trying now, etc... I'll try to "friend" you, if it doesn't go through, please feel free to "friend" me!!) :)
Great Feedback Dkel! I would like to offer a couple of general comments/ observations - and would love to hear from others on this topic as well.
1) Long term antibiotic use & seizure meds - some antibiotics make it harder for the body to absorb antiepileptic meds, but they aren't really studied because antibiotics aren't considered long-term meds by the medical community. The more poking-around I do on the internet, the more info I'm finding that shows the combo is a "bad" mix... the problem is, us neuro-lymies need both meds. Taking a break from antibiotics makes me feel worse, but seizures make my life especially bad. I have to work with my docs to find a balance...
2) REGULAR SLEEP SCHEDULE. Yuck. I hate it. I hated going to bed early when I was a kid and I hate it now that I'm a grown up. But I have learned that going to bed (I mean SLEEP, not just lying down) at the same time every night, and then getting up at the same time every morning REALLY does help reduce the seizure activity. Sometimes just a few days of being "out of whack" is all it takes. BE CAREFUL.
I don't want to sound like an alarmist, but I'm guessing that your daughter is on a combo of antibiotics, some type of malaria med, and anti seizure meds - hopefully the docs/hosp isn't giving the meds to her at the same time (at the very least, try to space a couple of hours between each type of med - let the docs roll their eyes and think you're being overly careful, better that than risk one of those "unlikely drug interactions that almost never happens").
OK... sadly, it's time for this "grown up" to go to bed. I hope your daughter does better, that the hosp pulls in a doc who's willing to LISTEN and tap into the wisdom your LLMD and other specialists in the area can provide and that you'll have her home, and settled soon!