posted
but I am sick of being sick. I am 24 and so ****ing frustrated. My best friend is back in the area, and I can only visit him for an hour or two at a time. I just want to be able to hang out and have FUN like the good 'ol days.
I'm not depressed. I haven't been this entire illness. My brain only goes the opposite direction. A very excitotoxic state. I have it under much better control, but not every day is good.
Everyone around me says I look so much healthier (even though I gained 20 unwanted pounds lately), and say they see so much progress, but where? I still don't even feel comfortable at doing a simple task of driving a car to a store. How hard is that? It shouldn't be hard at all!
Perhaps I am not in and out of the ER as much, and perhaps I am complaining less.
Ok, if I think about it, I guess I have made progress.
I just finished my third week of Rocephin and I am so fatigued, and ****ed off. Hopefully it's the bugs dying. I just don't understand why I feel relief after infusions, and feel worse on my days off. No dramatic herx yet, and quite frankly, I am not hoping for a dramatic one again. I just want it to stop. Everything to stop. I want a normal life.
What's with people thinking that people WANT to have Lyme Disease. I hate this disease. I wanted it to be something else at one point, and fifty to a hundred thousand dollars later, nothing. My insurance company obviously hates me.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I also dislike the perception that we want to be sick. It really shows the lack of understanding surrounding this disease and the lack of compassion in people.
For what it is worth, I've been treating for 20 months and can only appreciate progress when I step back and look at the big picture.
I'm coming out of a major Herx that has left me doing a lot of complaining, myself.
Hang in there and take care.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
It appears that there is a CFS doctor around that deals with Lyme/CFS and takes insurance. It made my day a bit brighter.
Just stumbled upon his website and watched his story. His wife got sick with CFS after visiting Lake Tahoe in 1985. I got sick in Lake Tahoe in 2008. It gave me the chills watching it. It also gave me the chills when one of the opening scenes in Under Our Skin was where I lived in Tahoe. Now I am out in the middle of the country with my parents in the flats.
He also lists Igenex as one of the labs he uses on his site.
I don't need Lyme treatment from him, but perhaps he knows how to address the CFS type fatigue as he seems to have a lot of experience. I was looking for a CFS doctor that doesn't discredit Lyme. It looks like he favors supplements over pharmaceuticals, which is appealing to me, because I don't seem to get along well with all those chemicals anymore.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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