Negative sputum results without treatment

@sayaboleh Thanks for your response. Keep us updated on your progress. Cheers!

@sayaboleh What else did you learn at the conference? Any new info on mac? Or new treatments coming? Or why it is becoming epidemic? Thanks!

Hi Terri. The conference was excellent! I am so grateful my husband and I were able to attend. There was so much information given that it was difficult to take it all in. I am anxious for the presentations to be posted on YouTube for all of us to see. I encourage others to attend future conferences if possible.

One of the overriding thoughts that we picked up on was how much the experts don’t know. No solid consensus on treatment strategies, who to treat, when to treat, and the overall risks of treatment. But there are a couple of treatments on the horizon which show promise, including nitric oxide inhalation and phage therapy. Hopefully both will continue in development so we have better options for care.

One observation I made is that the experts in the room were the most humble and sincere health care professionals I have encountered. I spent my entire career in this arena and was extremely impressed by the sincerity and honesty in their communication and approach. They are working hard to provide the best care possible and to find better strategies to help us manage our diseases.

And I have to give kudos to this Mayo Connect online forum. The mentors as well as patients are so knowledgeable and willing to share. Nearly everything discussed at the conference has been addressed in various threads on this site. Thank you to all who provide input and guidance, especially to you Terri!

@deborahwolf Thank you so much for that information. There is hope in our future, yay.

@alleycat @pfists @windwalker I have been finding it hard to produce sputum all along. But my MAC after 17 months of the Big 3 is still present on a biopsy I had a month ago. I am still waiting for sensitivity tests to return. I am not sure what the next step will be. I guess it will all be pending the sensitivity results. Any other suggestions from anyone? I have not felt like I did prior to the biopsy. I am not sure if it is physical or mental. I don't want to let this beat me physically or mentally.

@jkiemen Hi Jo Ann. That has to feel very disheartening to test positive after 17 months on those meds. Wish I could hug you right now. Could your dr tell if it was a low colony count? Was there any improvement? Did your dr discuss other treatment options?

@jkiemen
Jo Ann
I'm so sorry that's not the news we wanted to hear from you.
Try and keep the faith and not to be too discouraged.
Hopefully they will tweek your meds after the sensitivity report and get the right combo.
I know there is a big body mind connection and just getting news like that can effect your whole body. So try and not let that happen.
Im sending you a special prayer for healing tonight.

Shari

@brigby. Thank you. I'm afraid I'm going to have to whine a little now. As I may have mentioned elsewhere I have other health issues, one of which is atrial fib. or in my case flutter. About 3 days ago, I went back into afib. which in itself is not too bad. Not long after the onset, as I sat down to do my nebulizing and bent down to pick something up, I pulled my back muscle. I have not been able to get an appointment with a physical therapist (not for weeks anyway) so I am just doing a lot of stretching, heat and ice. Not fun with either one problem but horrible with both at the same time! I do a lot of stretching and exercise everyday -- wondering if I did too much somehow and strained something. I am scheduled for a cardioversion tomorrow which will fix the afib (temporarily at least). Wish there was a similar fix for my back other than time. (sigh). Mary

Oh @jkiemen Jo Ann...I am so very sorry to hear your news on the MAC still being active. How difficult. Terri's thought was interesting...wondering if you have discussed an alternative treatment option with your Dr.?? I wish I could add good advice other than try to stay strong and positive. My heart goes out to you and my thoughts and prayers are with you also. Keep fighting the fight.

@windwalker Hi Terri -- I think there is a lot still to be learned. I think there has been knowledge gained but it is very incremental and not entirely conclusive. I think it took a while to come up with a clear definition of an 'exacerbation' part of the decision-making of whether to treat or not. Seems like that was a big deal for clinicians/researchers. There is no doubt that there has been substantial increases in infection rates in parts of the world that are alarming, but no one really knows why. I noticed that some of the data presented was somewhat dated so found it difficult to ascertain what was new. I gather the challenge for epidemiologists is that NTM is not a reportable disease or not reported well where it is. (I brought that up elsewhere)
As for treatment, It was clear that inhaled antibiotics is the next big thing although there was no mention of costs -- which I hear is prohibitive as with all new drugs. No one at the conference seemed concerned so I gather there must be some way to deal with that. I saw a list of 7 ongoing clinical trials for these and a statement that none have been approved (I thought Amikacin was??) I learned that some antibiotics can result in QTc prolongation, something I have to watch out for. There was mention of a drug called Bedaquiline used for TB years ago and recently shown to be effective for NTM as well, with the caveat that it is dispensed from just ONE pharmacy in the US and that it costs $30K for 6 months (learned elsewhere).
There was a lot of information/data presented and sometimes no clear explanation of what it all means to us lay people. I was quite overwhelmed sometimes. It would have been nice to have occasional small breakout groups - will provide that feedback. I just learned the next world conference is in Vienna in July. Would be nice to go that one although twice in a year seems like too much...:-)
Mary