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Neuro Lyme question

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Posted 10/28/2014 5:09 PM (GMT -5)
I just wanted to see if anyone with Neuro Lyme can help me understand a symptom. My daughter is 23 but has Down syndrome so she can't explain what's going on except to say her brain is spinning around and it has a loud noise. She's constantly staggering from dizziness and has severe mood swings with depression and shouting which I didn't even think she was capable of. Anyway the thing I'm asking about is, in a split second she can start screaming with such a high pitched cry holding the top of her head with the most frightening look on her face. There is nothing we can do to calm her until it's over. She just says it hurts and it's real loud. All the spells last a few times a day but only for 10 minutes at a time and once it's over she is apologetic and tells us it's just her brain. Any ideas of what could happen during these ironic episodes?
Posted 10/28/2014 5:55 PM (GMT -5)
Maybe the "electric shock" thing that people complain about? I get "headrushes" of pain in my head that is really intense. It makes me feel dizzy and and sometimes nauseous.
Posted 10/28/2014 6:12 PM (GMT -5)
Thanks! It does make her nauseous. I'll read upon that.
Posted 10/28/2014 9:32 PM (GMT -5)
I had overwhelming head pain too. I have damaged nerves in my face and head from degenerative damage to my neck that went undiagnosed for about 12 years. That caused around 20 migraines a month. Headaches are something I am very used to yet nothing ever felt like the head pain from the Lyme. That was darn near unbearable and I have a very high pain tolerance.

I didn't realize that I had Lyme for 16 months. I had a bullseye but didn't know what it meant. I was rehabbing from major shoulder surgery. That is very painful so attributed my decline to that.

I laid on my sofa with my head wrapped in either a heating pad or ice packs around my head to try to get through it. I also had 3 or 4 what I would call episodes all in the middle of the night were it felt like something very seriously wrong was happening to my brain. The first time I really thought I was going to die and i'm not an alarmist. She could be having something similar.

After my positive iGeneX test my LLMD switched my abx saying let's work on your brain. I went on 500mg of Biaxin twice a day and 300mg of Omnicef twice a day. After a short period of time I rejoined the world for the first time in years.

Maybe you can take that info to your LLMD?

I also have really soft blankets everywhere. The soft texture helps relax me. Not very different than a babies blankie :-)
Posted 10/29/2014 12:34 AM (GMT -5)
That's really helpful. Thanks so much for sharing. It seems to be some of the exact things she says to me. She says several times a day that something's wrong with her brain or my brain won't leave me alone. I feel so bad for anyone going through this stuff. And it's really hard on a person who can't understand what's happening to them. Doctors that don't know she can read and spell pretty much anything and has always been so gentle and loving her whole life, think it's just her having Downs. It's definitely not. Especially when she has had 100 other things go wrong in just 6 months after a perfectly healthy life up until. She also had the bullseye rash when I got the tick off but I didn't even know that meant lyme. 3 more weeks till the LLMD appointment. Can't wait! :)
Posted 10/29/2014 3:22 AM (GMT -5)
jrpsf.

Did Biaxin and Omnicef stop your headaches? What exactly are they suppose to do for Lyme?
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