Quote:
Originally Posted by Tracy9
Well, I'm just laying in bed with oxygen on. My brother who has COPD gave me all his oxygen because he never uses it and it really helps me, so I lay with it on for a while each aft/evening if I feel not so good.
When the Mestinon wears off, my legs turn to Jello, I feel weak all over and tired. But mainly I can't walk well anymore and my arms start to ache. Any level of functioning is far more difficult. I go from being able to walk for a bit unassisted to back in bed because it's too hard. Now even with the Mestinon I'm not up for long, but how great it is to be able to get up for an hour or so!
No crying, maybe talking to hubby a little more than usual. I do notice if I eat or drink anything cold my tongue is out of commission for at least a half hour.
Recent bloodwork showed I went from very hypothyroid to VERY hyperthyoid and I have no idea why. I just got it in the mail yesterday from my PCP. He had a note asking if I am taking my meds right which I am.
Choking more on fluids, but that's been the case for a while. I get IV Solumedrol every two weeks for two days before IVIG but that's the only steroids I can get. It's contraindicated with Lyme and I can get very very sick if I take steroids. I shouldnt' even be getting them pre med for IVIG but without them I get too many side effects.
I just started Rifampin four days ago. It is for Lyme and Bartonella. I was on it previously for five months.
I have a walker and wheelchair. I can bring the walker upstairs to use to go to the bathroom but otherwise, I'm always just in bed because I can't do anything. My hands don't work and my balance is so bad all I do is make a mess or hurt myself.
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Hi Tracy, when i had food posoning, i did not sleep all night had to get infront of a fan so it would blow oxygen to my face so i could breath easier, so the next day i was really bad becasue of no sleep and was soo fatigue went to the hosiptal they ammited me they put me on oxygen dont know why my nuero wasnt called hmm ? anyway my point is here i got an oxygen tank they gave me to bring home ( i talked them into giving me one) i myself self dianosed my problem ( not) and used the tank for about a week had a nuero appt told him and he SAID NOWAY for me to use oxygen it not mg related if i need breathing help then im in a crises hmm , my thoughts are should not use some ones else oxygen for what we think might help, we feel its helping but can cause damage in brain beacue its not the real problem thinking we need oxygen beleive me i know as well and felt good breathing it but can cause brain damage so i gave back the tank gee doc was no fun
