Considering treatment for M. Abscessus

Hello Cattleya, my sputum has been positive for M. Abscessus since 2018. I previously had MAI and MAC infections. My pulmonologist prefers to treat only if or when I become ill since the treatment regimen can be severe and may not be successful. If you feel pretty good and are able to exercise that much, then you can decline treatment in favor of clinical monitoring.

Like you, I want to stay well enough to never need treatment. In other words, I'm willing to live with the colonization if it allows me a fairly good quality of life. I was hospitalized recently with an upper respiratory bacterial infection and my ID doctor was ready to start treatment: IV imipenem, IV tigecycline, oral clofazamine and linezolid along with phage therapy as the initial treatment. I asked to hold off until the acute infection resolved and afterwards I gained a little weight and started strength training with a personal trainer and feel relatively well again. So we're back to monitoring because I don't meet clinical criteria for treatment. I feel like I dodged a bullet. I hope you find this helpful. I wish you the very best.

I have abscessus since 2021 with symptoms of wt loss , fatigue n loss of appetite. I was active doing sports n yoga and chose not to do the prescribed treatment of IV therapy and medication. I wrote to San Diego ID department requesting Phages therapy. I would be considered for the treatment if I had side effects from the protocol treatment.
I’m having SOB for the last 3 months and not able to play pickle ball. I’m doing saline and Abuteral inhalation . It’s a difficult decision to do the protocol therapy and worried about drug side effects. I don’t understand why myID Dr can only get the medication through a University??
Thank you for your support
Ann

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

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

I am interested if anyone with bronchiectasis and M. Abscessus has investigated the work of Graham Hatfull at U of Pittsburgh. Are there clinical trials ongoing there or a way to be seen for possible treatment? Any information would be appreciated. I am due to be seen at NJH in January for evaluation and am not keen at all for the toxic regimen of antibiotics that will be prescribed. I feel great now, but I'm sure I will not if I start on the drugs. I will be 78 in a few weeks and exercise hard almost every day, cycling, hiking and riding my horse.
Marty

This article may be of interest to you.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9825826/
The only caution - as with all other phage experiments with patients, subjects must be resistant to known therapies or fail them.

I am curious as to the finding of M. abscessus, yet you report you are feeling well - it is typically pretty fast-growing. Have you had more than one positive specimen?

This article may be of interest to you.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9825826/
The only caution - as with all other phage experiments with patients, subjects must be resistant to known therapies or fail them.

I am curious as to the finding of M. abscessus, yet you report you are feeling well - it is typically pretty fast-growing. Have you had more than one positive specimen?

Hi Sue, thank you so much for posting this article. It's much appreciated. Here is the one that I referenced.

Your question about Abscessus being fast-growing is a good one, especially since my sputum has been positive for it for several years, but I did not feel unwell until last year, and now I'm feeling better again. I wonder if the speed of growth is related to whether or not the underlying cause is due to cystic fibrosis vs bronchiectasis? I also wonder if progression is impacted by previous infections? It's a question I will ask my pulmonologist.