|Mar 02 2010|
I had my third LLMD appt yesterday. Before this appt, I did 2 cycles of oral abx, and got much much much worse. About a week ago, I had to start getting around primarily in a wheelchair. My hips hurtso bad I can't sit, stand, walk, or lie down without an immense amount of pain.
My doc was really concerned when I showed up in a wheelchair, and was especially concerned about the level of CNS involvement. I can't stand up at all with my eyes closed, and I can't even bring my finger to my nose with my eyes closed.
The doc thinks the 2 cycles of abx I just did really ticked the bacteria off, and made it more evident. He also said that if I didn't have my sauna, I would have ended up in the hospital by now.
So, we switched up the abx cycle. Now I will do 2 weeks on, 2 weeks off, but he said I will prob need to go ahead and do IV abx. We decided to give it 3 months on the orals, but he doesn't think I will last more than a cycle on those before I can't tolerate by mouth. I was hoping to steer clear of IV, but I guess I won't be that lucky. Oh well.
My doc has pretty much said I am one of his sicker patients, and it didn't REALLY hit me until yesterday how sick I was. I knew I was very bad off, but when he, a world renowned lyme specialist, told me that I was an extremely sick young lady, it felt like a punch in the gut. I have seen some of his patients, and to be categorized alongside them, makes me so sad, and reality kicks in.
My husband went so far as to show me what I look like when I try to walk through the house...I didn't think I looked like a 200 year old woman all hunched up, shuffling their feet and limping...jeez...
Sorry for all this ranting, but I just feel raw. I put so much faith in the orals and it's not working.
I am going in later in the week (when this damn snow melts) for hip films and some more bloodwork. He also doubled my lyrica and quadrupled my lamictal. I got some darvocet, but that isn't working since most of my pain is neurological. He also prescribed me a lidcaine patch (Lidoderm) to place on my hips to provide some relief. Haven't tried them yet, but I hope it works.
Oh, we also added Nattokinase, switched from reg magnesium to Magnesium Malate, and glutamine powder. And....the entire week 4 of each cycle, I add Alinia 500mg. It is an anti parasitic, and I have no experience with it.
I suppose that's all the news I have now. I hope everyone is doing great and I will continue to strive to keep my spirits up bc I refuse to give into this mess!
<3 hugs and kisses <3
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