Sounds like what I have been through. Have been staying with a friend in Tampa, but going home to Tallahassee Friday. Not sure how I am going to handle this alone.

@cathyxyz I agree with some of what you have said. I value the opinions of trained medical professionals immensely and would follow their advice most of the time. But I also follow my own gut feelings many times, which have not led me down the wrong path. We know our bodies better than anyone else, doctors included. The latter may have a ton of experience and knowledge, they don't know how we feel on a daily basis. So they have to go by the book so to speak. I don't fault them on that because they have taken their knowledge out of treating numerous patients that share the same diseases. But each person has their unique physical conditions and circumstances and biological traits. There is no one-size-fits-all here. I was offered an option to take or not take the strong antibiotics when I was first diagnosed. After learning all the negative effects that these drugs could do to the organs if taken long term, knowing that I was otherwise very healthy and had no difficulty with activities and daily living, I opted not to take the medication despite the fact that I had coughed up a very large amount of blood due to the MAC infection. After examining me and reading my chest X-ray result, doctor agreed with my decision. We decided that we would revisit the drug option when and if my condition worsened. That was 3 years ago. My condition has been stable and showed some improvement according to the latest chest X-ray. The only supplements that I'm taking on daily basis are Vitamin D, calcium, and multi-vitamins. Nothing else. But I try to stay active and eat healthy. A lot of vegetables and fruit. Whole grains. I will be paying my pulmonary doctor yearly visits to find out how I'm doing (sooner if I start to feel unwell) and plan on living happily going forward until I can't. So far so good. Fingers crossed. Hope you are doing well with your alternative regimen and keeping the bugs at bay.

That is awesome for you. I am so happy for you! I hope that continues!

I agree with everything you say. I have been to many ID doctors ( because we moved) and have found that most wish there were a less toxic treatment, and feel that for many patients they treated only a few made it through the treatment which is frustrating for them as well. However, the consensus for me since mine was progressing and I was losing so much weight was that treatment was the only option, and the sooner the better. They were not at all adverse to my taking vitamins like D and C and calcium etc They encouraged that. They also want me taking/using other things at this point to which I told them I am not a party animal - boring really I guess. And yes we know our bodies best. I am just hoping for a less toxic cure (sooner than later) so I can switch to that. We need to weigh our options and make informed decisions based on everything. My family wants me to “live” so I am doing the treatment for them.

I stayed on the meds as long as I could, but my body could not handle them. I was very active and this illness has stopped me.

Ling123...Please private message me.

What form of Nitric Oxide are you getting?

Dear Suenfl,
I am in Largo close to Tampa. It would have been a pleasure to meet you! I know some of you live in Florida. I wonder if we can meet. Let me know those who are interested.

I agree with you cathyxyz

Hi @suenfl, you'll notice that I removed your personal email address from your message above. Connect is a public website, so we recommend using the private message to exchange personal contact info. To private message another member, simply click their @username or profile image. This will take you to their profile page where you will see the option to Send Private Message.