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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Need lots of help
Posted by @shiell in MAC & Bronchiectasis, 1 hour ago
I introduced myself and problem a few weeks ago. I don't think I had reached the occurrence yet that I am writing about today. I had a six month visit with my pulmonologist and he ordered a sputum test because I complained of coughing more. Sadly the result was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help
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Dear @shiell .. (and @windwalker, @tay4rake, @luvocean, and others dealing with Pseudomonas) I hope you don't mind but I am moving your post to an area where there are others dealing with Pseudomonas .. I am hoping you will receive more help there. I remember you are the caretaker for your husband so this must be a tough time for you.
I can only speak for myself. I was diagnosed with Pseudomonas 3/7/17. My Pulmonologist, Dr. Timothy Aksamit at Mayo Clinic, Rochester MN prescribed Cipro 500mg 2x per day for 28 days with the understanding that if that did not stabilize the Pseudomonas .. then we would do the Toby 28 days on .. 28 days off for a 3 time cycle. You might ask your Pulmonologist IF this might be an option for you? Sending you Hug and positive energy in this tough time! Katherine
Replies to "Need lots of help Posted by @shiell in MAC & Bronchiectasis, 1 hour ago I introduced..."
@windwalker, Terri, curious .. do you remember WHY he could not tolerate? Symptoms? Hugs! Katherine
<br><br><br><br><br>I do not recall what his reaction was, I know that for most people it is a <br>sore throat. I experienced a bad sore throat and hoarseness for the first two <br>weeks. I acclimated to it and now look forward to my bi-monthly treatment. My <br>lungs are crystal clear when I am on it.<br> <br><br>
@windwalker, Terri, thanks! So as with the MAC meds .. with Tobi .. if you stick with it .. there is light at the end of the tunnel with the Pseudomonas treatment. Hugs! Katherine
This is Connie. I will mention this to my ID doctor tomorrow as I cannot take Toby. Thank you!
This is Connie: My reaction was quite by accident. I was having some eye problems and was using the Toby eye drops. After a few times I had some tightness in my chest and trouble breathing.
@luvocean .. Connie your reaction .. trouble breathing sound big time! Definitely serious! Thanks for the info! Hugs! Katherine
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Sheill, a friend of mine could not tolerate the toby either, his dr put him on colistlin another inhaled antibiotic. He said that worked well for him.