@lindam272 .. Linda, hello and Welcome to our Forum! So glad to have you! I am back and happy to be here!

You are one plucky female to have read all through the pages .. WOW! But yet we are indeed kindred spirits .. I would have done the same thing. I was an absolute sponge when I was first diagnosed with MAC .. I was so eager to understand my disease.

Just wondered just where you are on your own MAC journey? How are you doing? Anyway .. glad to have you here! Hugs! Katherine

Katherine, Nice to see you back! Your uplifting energy and spirit flowed through the pages of this discussion group and, along with all the others, has really helped me get some perspective on what I am dealing with. I've been out of town for a few days so wasn't on the discussion group while gone. Right now I am on the Azithromycin, which I began around mid-December and the Ethambutol (1200mgs), which I began the day after Christmas. I start my Rifampin tomorrow (1/7). So far I haven't had much trouble at all. I'm not sleeping as well - waking up every 2 hrs, and I've had a couple of headaches that have been annoying but all-in-all I appear to be blessed with not having any stomach troubles. Hoping that the Rifampin doesn't change that a lot. I've noticed in my breathing treatments (twice a day) that the mucous is clearer and I'm not getting up as much as I was when I first started. I'm hopeful and actually excited to be on a path towards better health! As I told my infectious disease doc - Let's get on with this and get it done! I've got lots to do! Linda

@lindam272 Linda, SO glad you're doing so well! LOVE your great attitude .. you go girl!

Now I can ONLY speak for myself .. but I found Rifampin REALLY interfered with my sleep .. so I started taking it first thing in the morning .. that really helped! Plus interestingly enough .. when I went off the antibiotics .. the funny leg issues during sleep stopped! It was just a weird feeling .. hard to describe .. but it stopped once I stopped the Rifampin. Funny how each of our bodies react differently!

If you read past posts .. I have found help with sleep using one tab of "Twin Labs 400mg Magnesium" .. had to order it online but that seems to help .. read about it somewhere .. seems to help me. I prefer more natural things if possible .. don't want to do sleeping pills!
So keep us posted on your progress .. sending you a hug! Katherine

Rifampin definitely caused sleep problems for me. I take in in AM on an empty stomach for good absorption. It causes red urine, stools even sweatbin some folks. I also think that it caused nausea, but at 3 weeks I got better. I've never been 100% on the big 3, but I'm getting by much better.

Kay S

Kay, thanks for jumping in to help @lindam272 Linda! That is really good info! If people are not warned about the "red" .. it can be disconcerting! WHAT!! is going on?!

Plus I just looked back on my notes: RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID. Since I have been on Synthroid since my 40's .. that was important info for me.

Also found: Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Take this medicine on an empty stomach, either 1 hour before or 2 hours after food.

Hope this helps Linda! Hugs to you both! Katherine

I'm looking for advice from the group about nausea. I've had MAC for 5 months and am taking the BIG THree meds (Rifampin, Ethambutol and Clarithromycin) I've lost 12 pounds because of nausea and lack of appetite. I'm down to 133 pounds (I was six foot three and thin even before MAC). My pulmonologist told me to try perscription drug Ondasetron for nausea, but it doesn' seem to help. Any other ideas?
David

So, this is what my schedule looks like right now. Up at 6:30 / 7am - probiotic / 8am Azithromycin and breakfast / 10am first Rifampin w/full glass of water (just starting today 1/7) / 12:00 First Ethambutol with light lunch / 2pm Second Rifampin w/full glass of water / 4pm second Ethambutol w/snack / 6pm Third Ethambutol w/light dinner / 8pm probiotic on empty stomach. I figure I will take my vitamins when I wake up in the middle of the night because I can't figure out how to take them with this schedule. The woman in my office who is also fighting this disease says she doesn't take 2 of anything at the same time so I'm following her example which has helped so far. Any feedback would be appreciated. Linda

When I first started treatment my doc said I could take all at once if I wanted to. I experimented taking at different times. Part at different times. Then all at night and finally the first thing the morning. That worked the best for me. I was just glad to get all down and over with. Could not tell difference in the way I felt.

Hi @david1952, ginger and licorise tea was great for me and ginger lollies, worked really well for me also.Good luck.

Here's a few: Angel mints are known for nausea relief by folks in chemotherapy (very similar to what we go through) http://www.angelmint.com/products-page/; Ginger in candy or other form works well, too http://www.pipingrock.com/crystallized-ginger/crystallized-ginger-60220?prd=D0000J&gclid=Cj0KEQiAwMLDBRDCh_r9sMvQ_88BEiQA6zuAQ494_tQ8JD1hp9IfbhLIvzlF5_sGKRJR_T0ITmzgSCwaAmIv8P8HAQ and finally, I recently purchased the No Mo Nausea wrist band and found it to be useful for minor bouts or prevention https://nomonausea.com/ - they also have essential oils aromatherapy that can be very effective.
Also, a quality probiotic will help ward off nausea from the gig-go.
I too cannot be helped with standard anti-nausea drugs, so hope some or all of these help you!