Phage Therapy ( alternative of antibiotics) for MAC lung infection

I just saw a TV show about this, women saved her husband with it, he was close to death. She was a research Doctor , it was on CNN. Dr Gupta, alternative treatments to antibiotics that are not working. Fighting superbugs. Amazing, need research for this.

My story is similar to yours. I was diagnosed in 2013. Did the Big 3 for 18 months and got hearing loss and tinnitis. I cleared the MAI but within the year got MAC. I refused further antibiotic treatment since the 'cure' was as bad as the disease and it could always come back. After reading online about nebulizing saline, I asked my pulmonologist about it and he let me try it. He could have suggested it years earlier! My bronchiectasis progressed steadily and I got several other strains of NTM, plus serratia and Hafnia, but still refused abx. I think the saline has kept infections tamped down - as well as serious lung clearence - which again, I learned about online. The Facebook page Lung Matters is incredibly helpful. I know things are progressing, but I am hopeful that I can avoid surgery (NJH wants to remove a lobe and put me on abx for a couple of years). Phages offer hope as well as nitric oxide therapy, Arina, and other treatments in trials now. Fingers crossed!

Anyone wishing to learn more about phages - these are excellent and inspiring resources:
ipath.ucsd.edu
https://saltinmysouldoc.com/
https://m.youtube.com/watch?ab_channel=JudithBunting&v=bmKMIP91lTE
https://www.genengnews.com/insights/set-phages-to-kill/
https://www.theguardian.com/science/2019/may/08/teenager-recovers-from-near-death-in-world-first-gm-virus-treatment?CMP=share_btn_link

Hi Mary,
Thx for your feedback. I hope that we can get phage therapy when FDA approves it. Currently it is in clinic trial stage and hopefully with more awareness of NTM patients, we can do something together make it progress faster. I have got the referral from my family doctor and sent the application as an international patient to UZ Leuven in Belgium. I am waiting for the reply from the Belgium hospital, UZ Leuven. They have phage therapy for over 100 years. But whether they will accept MAC patient, I am not sure yet. Let's cross the fingers.

Good luck to everyone in this group!

Helen

I have received the consultation invitation from UZ Leuven. But the consultation will be on April 24, 2024. 🙁 Seem they have a long waiting list.
Anyone interested in visiting UZ Leuven as an international patient may also contact them. It is No. 1 hospital in Belgium and top 50 in the world. However, they have a long history ( 100 years) in phage therapy and the only hospital with this specialty in western Europe.

Hi Helen:
Thank you so much for your question. It has already had great responses (thanks to all), and prompted me to do a lit search--very brief--on it. I'm attaching two journal articles hopefully, they are very dense but the intro and summaries are useful. I hope this is helpful, Roisin.

Hi Helen,
I'm very interested in your plans for the hospital in Belgium. I hope you let us know how things go. It's the first glimmer of hope I've felt in a long time. Best to you, Sarah

Hi Sarah,
Here is the website to register as an international patient.
https://www.uzleuven.be/en/consultation-and-admission/admission#international-patients
I submit the medical report and doctor's referrral and so far I got an consultation invitation in April 2024. I need to check whether an online interview works.
If you are interested, please feel free to contact them.
Let me know,
Helen

Thank you so much Helen. I will definitely do that and keep you posted!

Sarah

Hi looked at the information on the phage therapy in Poland- there are three sites ( Wrocław, Częstochowa and Krakow)that do it for various bacteria including pseudomonas. The centers in Poland do not treat Mac though. You have to register first and then can schedule a consultation visit. Helen does the center in Belgium treat Mycobacterium? I could not find it on the hospital site.