1. < MAC & Bronchiectasis

Phage therapy

Posted by kathyhg @kathyhg, Jan 12, 2024

I just saw a commercial about a woman who had phage therapy for mycobacterium abscesses at the Mayo Clinic, with really good results. I’ve read a bit about phage therapy here, I think, but never paid much attention to it until now.

Has anyone had experience with phage therapy and/or know more about it? Is it a legitimate alternative to the medications, airway clearance, etc to treating NTM (I have Mac)?

Thanks in advance

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

scoop | @scoop | Apr 17, 2024
In reply to @helen1000 "Good morning, Just talked to Dr. Dupont from UZ Leuven. He is such a respectable person!..." + (show)
@helen1000

Good morning,

Just talked to Dr. Dupont from UZ Leuven. He is such a respectable person! Very decent, very honest and respect his patients. He spent 30 mins thoroughly discussed phage therapy, answered all my questions and possible treatment methods. He is a real doctor.

The whole process is 1) provide the medical information to the hospital, 2) Give the sputum culture to laboratory and they test whether there is phage to your bacteria, if yes, 3) Return to Belgium to receive the treatment for 6 weeks. Every week, there is new medication ( phage). It is hard to ship the phage so it is better to receive the treatment in person.

As I am an international patient, there may be an option to send the sputum culture from USA to Belgium instead of going there in person. I will discuss with my doctor to see whether he can do this for me.

Phage is still in experimental stage and they have only two MAC patients and no successful cases yet. And these two patients are both using phage as a salvage. That means, they have tried all other therapies and none of them work. But a good thing is that phage therapy has no side effects from all of his patients (including patients of other illnesses).

So I am hesitating whether I should move forward. Anyone interested in seeking therapy in Belgium based on above? The total cost should be around $2000- $4000. It is kind of appealing to me as I really hesitate to go thorough antibiotics.

Jump to this post

Perhaps I've missed something. With phage trials in USA what would prompt the visit to Belgium? There was a study I linked that showed compassionate phage use in 20 people if I remember correctly. Not sure about the country but the conflict of interest statement is exceptionally long. Showed favorable benefit in some patients.

REPLY
1 reply
helen1000 | @helen1000 | Apr 17, 2024
In reply to @scoop "Perhaps I've missed something. With phage trials in USA what would prompt the visit to Belgium?..." + (show)
@scoop

Perhaps I've missed something. With phage trials in USA what would prompt the visit to Belgium? There was a study I linked that showed compassionate phage use in 20 people if I remember correctly. Not sure about the country but the conflict of interest statement is exceptionally long. Showed favorable benefit in some patients.

Jump to this post

Maybe not for MAC patient? But for patients with other diseases?

REPLY
lilianna | @lilianna | Apr 18, 2024

Helen be a pioneer. Would they treat you despite not being treated for Mac so far? I really would like to know. Or would they treat you if you are being treated or finished treatment? I think you are a curious and brave and strong to go that way. But please share what’s happening.

REPLY
kathyhg | @kathyhg | Apr 18, 2024

Agree. Helen is making me think about options like this and I’m guessing others might feel the same!

REPLY
kathyhg | @kathyhg | Jan 29 2:34pm
In reply to @becleartoday "Last week at the NYU Langone bronchiectasis and NTM patient conference, Dr. Doreen Addrizzo Harris mentioned..." + (show)
@becleartoday

Last week at the NYU Langone bronchiectasis and NTM patient conference, Dr. Doreen Addrizzo Harris mentioned that this year they will be participating in a trial for phage therapy and pseudomonas.
When I have more details, I will be sure to share them.
Linda Esposito

Jump to this post

Have you heard any more about this trial?

REPLY
1 reply
bayarea58 | @bayarea58 | Jan 30 2:44pm
In reply to @harrynsc "Get the book "The Perfect Predator". It was written by an Epidemiologist about the jouney with..." + (show)
@harrynsc

Get the book "The Perfect Predator". It was written by an Epidemiologist about the jouney with her
husband. Good history of phage going back to the 1950's in Russia and why American doctors
abandoned it based on erroneous logic. Sad.
Harry

Jump to this post

I remember from the news years ago the story of the wife saving her husband through phage therapy and remember thinking how extraordinary but also how sad. My recollection is that the only reason her husband survived is because she is/was a scientist and reached out to many different contacts at universities etc to plead for them to try and develop a phage for her husband and I think at the 11th hour one finally did (after many failures?). I haven’t read the book but the story was incredible. It also demonstrated the upside and downside to access. 99.9% of us could not have accomplished what she did even if we have a lot of resources to throw at the problem generally (which of course many of us don’t). I can’t tell you how many times I’ve wished that I had married a plumber, electrician, or mechanic. I guess I now have to add microbiologist to that list.

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 30 5:37pm
In reply to @kathyhg "Have you heard any more about this trial?" + (show)
@kathyhg

Have you heard any more about this trial?

Jump to this post

Investigation for broad use is still in very preliminary stages. All of my reading seems to indicate that for most uses, a phage must be developed incorporating the patient's own tissues and targeted at their specific infection. That means there is no drug or phage manufactured and waiting "on the shelf" to be used.
Knowing how medical treatments are developed, I believe this will be limited to critical or compassionate use for at least a few years until a specific process is developed for making this a routine treatment method.

REPLY
View MoreView Less
Please sign in or register to post a reply.