Ever Discouraged Not To Take Antibiotics?

Beth, my drs both at Mayo and private practice have all given me an antibiotic prescription to keep on hand in case of an exacerbation. My Mayo dr, Dr Leventhal even said to me "You know your body better than anyone. When you see and feel an infection coming on, fill the prescription and nip it in the bud." That was empowering statement, I was impressed that he had that kind of faith in my judgement. Sometimes our sputem can get greenish and then clear up in several days (especially if diligent in nebbing the saline twice a day) When that happens; I do not jump the gun and start on antibiotics. We can tell when it is bad enough to require action. Perhaps you can ask your dr about giving the script to keep on hand.

Yikes Lori! Just read this link you posted. That is scary!

@windwalker Part of what's scary to me are all the experiments conducted in Africa. We need to get to root causes and find solutions that don't have such negative side effects. (I'm curious. Would such experiments be accepted in the US or other "developed" countries?)

@ windwalker My Allergy/Asthma physician also prescribed a low dose antibiotic and had a script on file in case I had an exacerbation, then the script was no longer valid so I called the office to request a new one be sent to the pharmacy and the nurse that I talked to checked the file and said that she didn't see that on my last visit, so she refused to call in a script, so I do have an appointment next week with the doc and will ask him just what is going on. I have had this courtesy extended to me for almost 5 years and do not use it unless I really see a need, due to the fact that I cannot take many antibiotics having had C-diff in the past. Baz

Baz, keep me posted. I hope your dr visit is successful.

Lori, yes, I was thinking about how those poor folks in Africa are getting experimented on: just like the U.S. was in the 1940's-1960's when our govt dumped Serratia marcescens all over San Francisco, and other cities. They wanted to see if dumping it from the air would infect a population. It did.

I know I do not post very often but I do follow the information you post and it really helps. I stopped my treatment in October due to side effects. I go Tuesday for the results of my CT scan. I cannot continue the treatments due to EYE AND EAR PROBLEMS. My pulmonary doctor says I am not clear of the MAC. I have a copy of the CT Scan and the only thing new thing is "endobronchial filling defects" which has not been on the other CT scans. The nodules have decreased and I have no new ones for the past year while on the meds. What will happen now that I cannot do the meds anymore? Thanks as always for your help.

@derbeltal I can hear your anxiety about all this in your writing. I don’t know if this will provide you with any sort of comfort, but changing the meds can help with ear and eye problems. And for those of us who still struggle like yourself there is always the clinical trial of Arikayce. My own life before MAC and now with MAC and medicine are very different. I think I have gone through the stages of grief ten times over! My doctor at UMASS told me there is also a new drug out there on the horizon not yet approved by the FDA for MAC. Don’t give up! @irene5

Hello Derbetal. It is good hearing from you. Yeah, the antibiotics used to treat mac can be a bear to handle. There are various ways to treat mac; the 'Big 3' is not the only route. You can click on my photo icon and read how I was successfully treated. It all would depend on your suseptibility test to show what other meds may work for you. There are also newer meds that are nebulized which sends the meds straight to your lungs., i.e. arikayce and clofazimine. These supposedly bypass being in your entire body and thus affecting other organs. Plus, they target the infected area, the lungs. You may want to ask your dr about alternate meds to treat you with. Do you have a copy of your suseptibility tests from the lab? If not, get it. This will help you to be in charge of your health. I have a file just for my sputem lab results and the suseptibility test going back to 2013. There are many reasons to do this, and I plan to start a new conversation about that. Good luck tomorrow with your dr appt. Reminder: while there, ask for a printed hard copy of all your sputem lab tests and the suseptibility test. Would you mind coming back on here and sharing what you have learned after your dr visit?

Thanks and I will let you know. Good to know something else can be done besides meds. They have not discussed any options with me.