Ann, I totally understand your frustration. I also hoped that, if the time comes when treatment is necessary, I could forego the antibiotic protocol for phage therapy only. But it’s not easily available. Only a few research labs in the US are even researching this type of treatment. It’s experimental in the US, and even in the EU only a few places offer phage therapy. Here in the US, it’s not an approved treatment and officially only offered on a case-by-case basis under “compassionate use” grounds, which I think means “when other treatment fails” or when side effects of treatment are intolerable. This probably explains your doctor’s response.

In my case, if I need treatment, I will have the phage therapy with the antibiotic regimen, both at the same time. My pulmonologist has provided phage therapy in one previous instance that I know of, and is familiar with the process and people involved. But that will happen only if the lab is able to isolate, identify and grow the phages from my sputum. That process alone takes several months.

If you’re comfortable with it, you could ask your docs if they are willing to submit your sputum to the Hatfield lab in Pittsburgh and have your phage therapy developed and ready to go if needed. This lab has developed a phage cocktail for M. Abscessus previously, but as you may know, phage therapy is developed to treat each individual’s particular illness. It’s the ultimate personalized medicine. I don’t know yet if a phage cocktail has been successfully developed for me.

In the past year, I worked on treating the symptoms individually. I work with gastroenterology and functional medicine on the weight loss, and have slowly slowly gained some weight. I can’t jog so I walk on a treadmill and focus on strength training and yoga and pilates, exercises that I can do at my own pace (resting between reps or postures). The gained strength has helped alleviate the episodes of fatigue. I’m happy to share details of these. It’s a long, tough journey. Sending you hugs.
Roisin