My Reboot Process
 

Hi everyone,

Several weeks ago I posted about my upcoming immune system reboot. A handful of folks asked me to provide progress reports. I am currently on Day 8 of the reboot, and here is a brief summary of what has happened so far:

I was admitted to the hospital last Friday morning. I began 6 hours of hydration mid afternoon. Following that I was given 1. IV nausea meds 2. Med to protect my bladder 3. Cytoxan or cyclophosphamide (chemotherapy.)

Two hours after the Cytoxan was given, I was given IV lasix, and the peeing commenced. It was very important to keep the bladder cleaned and empty of the cytoxan.

By the time all the above finished, it was usually 2 or 3 am. At 4:30, I would be awakened for weighing and labs. The rest of the day was spent resting, trying to drink, peeing, and feeling pretty darn rough.

The above was repeated 4 days in a row. I came home on Tuesday evening, still drinking and peeing. I also came home with an array of anti-nausea drugs and other prescriptions specific to my needs.

I had my first follow up labs yesterday (Friday) and found that I am already neutropenic (have no white blood cells). I am vulnerable to any and every germ and am taking an antibiotic, an antifungal and an antiviral drug.

Tomorrow, Sunday, I will begin injecting Neupogen which is a growth factor to force my bone marrow to produce white cells. My immune system will be new, and hopefully "not remember" it has MG, and if/when it does, perhaps the immune suppressing drugs will work better for me.

As for MG improvements, I was absolutely shocked to begin noting things after the second infusion. I could drink from a straw, which has been impossible for several years. On Day 3, I could whistle, which I haven't done for over 8 years. Today, on Day 8, my dangerous dysphagia is about 80% resolved and my speech is 70% normal. It's crazy good! My stubborn double vision remains, but it's SO early yet, I'm not going to freak.

Anyway, that's all for now. I'll update more as it happens.

Thanks for reading!

4-eyes

This is truly great. I tried to whistle when I read this and couldnt. I stopped using straws years ago. Wow I am so happy for you. I have only read about this once before and not this kind of report so I hope you do some progress reports.

Annie59

Great news! I hope everything continues to go well for you! In your earlier post I saw that you had to stop all your meds and I can understand the prednisone but what was the doctor's reason for everything else?

MG doc in Midwest-upper
 

Can anyone suggest a good MG /neuro in the midwest near to Iowa as possible. In Iowa would be apriecated. Feel free to send me private message as I think we dont name docs here publically. I heard there was one in Des Moines. And I think AnnieB3 said she had one in MN. I need some suggestions for when I see my internist. Where I go now is a dead subject I will be lucky to just keep getting my mestinon.

Annie59

Wonderful news. Praying for a complete remission for you with no complications. Amen!