Does anyone here experience seizures related to neuro lyme? The infection has gone into my brain and I'm searching for the best way (oral vs. IV meds) to get rid of it. WHY DOES IT TAKE SO LONG TO GET BETTER?!?!? I am so frustrated, can't find support (medical, social, family, etc...) and it's all getting to be too much. Sorry to sound so whiney, some days it's harder to fight than others, I'm sure the sun will shine again tomorrow...
Thanks so much for the info - I'm not sure why but the ILADS links don't seem to work, can you double check them?
I've been on LOTS of oral antibiotics, have been trying to avoid the IV antibiotics, my doc wants to try IV Vitamin C - he says that Vit C will "pretty much kill bug hiding in the nooks and crannies of the brain" but the biggest reasons I want to avoid the IVs because of risks of infection and cost.
I'm having a particularly bad day today..... on top of a going through a rough patch over the past 2 weeks. Things were getting better, the symptoms were getting better, the seizures were getting better, I was able to work/think/carry a conversation more like a "normal" person... but then the rug was pulled out from under me again. I hate the anger/rage/frustration that goes with this sickness! I haven't been able to find a support group and I don't want to "admit" that this is real. Its so weird - I can't "imagine" this being part of my life forever, although it HAS been part of my life for years. WHY do WE have to be the ones doing the educating??? Educating the medical community? Educating our friends/family/coworkers?
Again, sorry for the whining but I've been feeling particularly "annoyed" today! ;)
hi there... l am so sorry about your condition...that does not bring any physical relief but l want you to know that it is normal to get frustrated/angry etc.... hope you feel comfortable "releasing " here... lots of folks in the same boat... ( keep looking for help and don't give up...) will pray for you ...)
Thanks for the reply. I keep a spreadsheet and have more than a few drs (my LLMD & a neuros) advising me - so far - it's all just a waste of time!! The "trends" (and I'm using that term loosely) are generally within 48 hours of:
- an up/down tick in progesterone
- starting/stopping flagyl (antibiotic that attacks the cyst form of lyme)
- same day/long term exposure to extreme temperatures (usually high heat/ humidity)
The drs have tried a variety of seizure meds (doses and brands), have experimented by adding hormones, and now are trying different combinations and doses of seizure meds. I hate all the side effects - and I think the side of effects from one of the meds might be making the lyme problems worse. My LLMD is researching and I'll find out more when I see him on Tues.
Sleep also impacts the seizures, I have to keep a VERY strict sleep schedule - most people don't understand why I can't stay up late one night a week, or sleep in on the weekends, but if I do, the seizures are more frequent.
Do you feel comfortable sharing more info about your seizures? What kind of meds do you take? how long have you taken them? What seems to control them the best? Whats the longest you've been seizure-free since the seizures started?
Hi LostGirl,
I do not think you are whining but rather stating what most of us feel. The fact that we shoulder so much of the burden, including blame and shame for contracting this disease is absolutely mind-boggling. I have extremely severe anxiety in addition to the physical ails with Lyme.
I am on anti-seizure medication of and on for migraines and anxiety. I do not have seizures but my body seizes, spasms, and I have motor tics and twitching constantly...not sure if those are technically seizures.
Like you I have taken many oral antibiotics and am avoiding the IV for now because of fear and cost. I have also heard that if it is in your brain you need to have medication that crosses the blood-brain barrier...usually IV. I have been on abx for a year and a half, now trying a medication to kill Babesia infection as well. How long have you been on treatment?
Hope today is a better one,
slmo
That link works - thank you!
I can't explain why, but the whole IV thing just doesn't "feel" right to me... I don't know if it's because my body knows it won't work, if its because I'm scared this is simply "snake oil" and/or if I just don't like the idea of being connected to a bag via a needle...
I do need a safe place to vent. Thank you for being here.