How do you get the best treatment? Please share.

Thank you shonny@shonny. Having a team of specialists coordinating your care is wonderful. However, most of us are limited in to whom we have access. I have a few practical suggestions to add:
1. Create a list of your diagnoses and medications prescribed and by whom. Give to all providers.
2. Create a one page history of your health problems. Give to all providers.
3. If you are lucky enough to have a mychart type online system, Take full advantage of it to contact providers with info prior to visits.
4. If your providers are individuals and not connected to a system, connect them yourself. Take your latest information from one provider to another.
5. If you have a provider who attributes your problems to getting older or being non-complient, change doctors Get a referral to a respiratory therapist and/or rheumatologist. The newest blood tests are fantastic at pinpointing what contributes to your problems. My asthma turned out to be caused by Lupus.

Shonney so you talked to chatGPT- AI and looked for how to treat your condition

How did you do it? Did you have a list of questions? Do you live in the area with good MAC or BE specialists?

Egayle this is really good advice. This is what I have been doing for the last two years. My doctors are ok individually but there is almost no communication unless it’s something super urgent.

I didn't get a list of doctor's names, just a list of their specialties and how they could contribute to my well being. Because of that list, I searched and found that my insurance offers a case manager to coordinate the care from all my different providers. I also found types of specialists that my pulmonologist hadn't offered me. Additionally, it gave me suggestions of testing, drugs, and exercises that they might offer me. For instance it suggested I get a pulmonary fitness test every 6 months and potentially sooner if I'm having exacerbations to monitor if my bronchiectasis is getting worse. If so, we can take more aggressive steps to stop additional damage.

I have a subscription to ChatGPT, but you could try other models. This was my prompt using the DeepResearch setting,

"Pretend I'm the US President. I have bronchiectasis as a result of having had a B cell Non-Hotchskins Marginal Zone Lymphoma tumor that was treated with Bendamustine and Rituximab. I've had repeated exacerbations of the bronchiectasis area. What grouping of experts would you assemble to give me the best outcome possible? "

You can try it by swapping your health situation for mine. Probably more detail will get you better results.

Thanks! This is helpful. I especially like the one page history, because it's hard to remember who I told what to and to remember everything I need to share when I meet with someone.

Regarding having a team of experts. It's often not that we don't have access to these people, but more that no one thought to offer them to us. I've got basic insurance, but I did some research I found practitioners that were covered. I just needed to raise my hand and ask for it.

I've definitely used it to do research. To some of my questions, my doctors just shrug there shoulders. Other times I see mention of something in an article or from a friend and it helps me dig deeper without having to visit 20 different websites. It now provides links to websites it references so I can double check the sources.

In this instance though I was just looking for what experts I should be talking to. I've frequently felt that I'm not getting the absolute best care available. It might be because I seem like a poor unimportant nobody, or the doctors are overworked rushing to the next patient. What would it be like if they had all the time in the world to just focus on me. What if I was their only patient and they went home at night and they dreamt about my situation. I guarantee I'd get better results. AI has got nothing better to do than use all it's resources on me. Then I take that information and discuss it with my doctors and I get miles further with a head start like that.

Thank you. You must be good at self advocacy- good for you. When I was diagnosed I knew nothing about my disease and did not understand I had two different -BE and MAC. That came with time and coming across this site- thank god. Then I started asking questions