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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease. I also was diagnosed with a second mycobacterium .. not m. fortuitum but it was MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . The "abscessus" was a difficult one to treat so I also had to take 4-5 antibiotics because of that second mycobacterium. Don't be afraid. It isn't the end of the world. It IS a pain in the neck! BUT I DID come out at the end of the tunnel and have been "stable" since May 2014. So I am just glad you are in good hands .. keep a positive attitude and just do your level best to keep yourself as healthy as possible. I am sending you positive energy and a hug! Keep your chin up! Katherine
Replies to "Mimi, I am SO glad you have found a doctor who is knowledgeable about our disease...."
Katherine
I started Rifampin 3 days ago, in addition to Ethambutol and star azythmycin tonight. The Mayp phamacist said to take them at night.
Last 2 nights I can't sleep, insomnia and nausea. I was feeling so good and wondering did you have this and did it pass after a time. I'm so exhausted from not sleeping.
What time of day did you take yours? I take BP meds in AM.
Thanks for suggestions
Kay
Kay I am on all 3 antibitics as well. First day I took the R one in the am and the A and E ones at dinner. I felt nausea after dinner so I started taking the A with lunch and the E with dinner and that seems to have helped me. I think the A has less side effects when taken with food and without other meds...at least for me. Good luck finding what works best for you.<br><br><br>
Kay, here are some notes I took when I was on the antibiotics .. this is what worked for me .. each person is different and I think you kind of have to play around with it .. but this is what helped me. I HOPE it helps you. I know how tough it is in the beginning .. my heart goes out to you .. just stick with it .. it does get easier. Let me know how it goes .. please! Sending you a hug! Katherine
My notes:
NOTES ON TAKING ANTIBIOTICS
Wake up a.m. and take probiotic on empty stomach
Ripampin (odd feelings in legs at night) 1 hour before or 2 hours after a meal with a full glass of water- 4 hour before vitamins
Ethambutol and Avelox (sleep disturbance) with Azithromycin: after breakfast with a full glass of water
8 hour before or 4 hours after multi vitamin
Bedtime: take regular p.m. meds & multi vitamin, Evista, Lipitor and p.m. probiotic.
Separate multi vitamin & probiotics from antibiotics by at least 4 hours if possible)
Kate
I'll try this. Rifampin in AM then? Just not clear on that.
Also, my sleep seemed fine on Ethambutol but went south w Rifampin. I start Azithromycin today for first time. Will take w food at lunch instead of tonight, since sleep was a problem for you with it.
I know we're all different, but I'm so uncertain now I am happy for suggestions.
I can live with nausea but I need my sleep!
I so appreciate your help. I'm trying to figure this out to make it work!
One last question, did the sleep and nausea get better after awhile?
Thanks, Kay
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Thank you so much for your kind words of encouragement. I am so happy that I found this blog and signed on. We are all in the "same boat" and it's nice to listen and talk to others with similar issues. My ID doctor is familiar with this blog and he did put in a good word for it as well.