Hi, I am new here. I was diagnosed with Bronchiectasis 18 months ago, have had various antibiotics and also 2 weeks intensive IV in hospital but all without success. It seems that we have run out of antibiotic possibilities.
I have heard of people getting very good results from treatment by Phages which target bacteria with great success. This area of medicine has been overlooked by western medicine but is thriving in the old Russian republic of Georgia where they claim good results for treating Bronchiectasi, but not guaranteed.
Does anyone know of, or have experience of Phage treatment.
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Sabie2
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It’s a lot more complicated than it was made to look. I have had a long conversation with my consultant ( who is chairman of the committee which wrote the latest bronch guidelines).
She is talking to her colleagues about it. Liverpool have done a study in mice. The Americans are also studying them.
They are very complicated to make because the virus which kills a specific bacteria has to be ‘found’ in a wide variety of situations. Not easy to manufacture.
Other things to think about
There is one clinic in Georgia offering this service
It costs £100 for the first sputum test
Every ten day treatment session costs £3000 to £5000
The lady in the film had had five months without needing another session. She still has pseudomonas. In other words it is a substitute for antibiotics but not necessarily more effective.
I have Been stable for years nebulising ceftazidime and since Jan 1 only nebulising saline.
With bronch you never know. I have been dancing with it for 66 years
Phages were developed during the communist era because their governments could not afford antibiotics.
I am obviously very interested in them and I encourage everyone to get their medics to ask questions, especially with the dire situation of antibiotic resistance and nothing else coming through.
It has to be born in mind that phages cannot tackle all bugs. NTM and tuberculosis for instance.
My con did say, ‘ well the eastern block are not known for their lung health.’
and it should be born in mind that there are wards in our large hospitals which are full of eastern europeans with TB! I saw it in 2015 when I was hospitalised with community aquired pneumonia.
Good luck with your investigations and lets hope that we can get something else into the mix although I suspect that if they ever get adopted they will be given to cf bronchs only and yet again we non cf s will be denied a useful treatment.
Thanks so much for all of that information...certainly I will forward anything on...
I am very lucky in that my bronch is only in the lower love but my consultant sometimes mentions an operation possibly but then always says it is not a nice op! 😂
At the moment I am very well and trying to keep active to help clear away any nasties. I am sure we can all help to make a difference.
Operating is something which goes in and out of fashion. My mother saved my life by refusing to let them cut out the affected parts of my lungs when I was three. This left me with enough tissue to exchange gases in my lungs. My sats are always 98%. It is perfectly possible to live a happy busy fulfilled life with bronch. You have to get in control of it and the management is down to you. The most important thing is to get the fluid out of your lungs every day - every day without fail. You work ou what is tge best time for it to come up and work it around your activities. This robs tge bugs of the lovely warm pools that they like to party and breed in. Also make sure that your GP coooerates with your consultant and that you have a rescue pack of the antibiotic specified by the con in the right dose for at least 14 days. You star taking this as soon as you feel things change. Over the years I have found that this usually follows a virus donated by some lovely person.
Every bronch I know who had the op was lovely for some time because the exacerbations stopped but bronch tends to start up in other parts of the lungs and years on I am now talking to those people who are very breathless because they do not have tge tissue to breathe through, it was cut out. Think very carefully before you ket them do anything to you.
Hi, I too have been in touch with the Georgians, sent over a sample of Sputum which they analysed and declared that none of their "off the shelf" phages would touch it so have offered to make a bespoke phage for about $4000 but with no guarentees that it would work, they also want me to spent 2 weeks in their clinic in Tbilisi, this may be impossible for me,
Even the Americans aren’t very far down the line. I think that drug companies find it too complex so are reluctant to commit money to the research and development.
You certainly know your stuff and I appreciate your help.
I must get a better routine going! If I am out, I tend to suppress secretions until I am in a private place to cough it out..which can mean I’m holding onto it for hours 🙈
By the way, I love the pic of your cat...cat’s are definitely the best counsellors 😂
Have a go before you go out. Then it's a case of '(have you read my book?')
'Always know where the toilet is!'
🤣🤣🤣🤣🤣
There is also research going on into replacing antibodies in non cf bronchs with pseudomonas colonisation. A study is about to get off the ground and hopefully I qualify. There have been a few experimental cases who have all benefitted.
there isa petition to permit use of phages on NHS but it closes at 0.01 6 nov . will not be opened again .
so will have to try again. you will probably know a lot more know as i have only today found your post. I do not know any more that what i have found on web sites
there ias a lot of woirk to do on this . Gt Ormond St trated a cystic fibosis child with a cocktail of 3 genetically altered phages and she responded to treat ment . they had advice from graham hatfull in Pitts burgh. San Diego Uni Medical centre has success . STephanee Strathdee ha a report and a video on utube about treating her husband. try TEDx Talks for this it is all out dated but interesting. a lot of more up to date reports on progress are available. did Georgia use just their local phages ? do you know if they altered the phages to prevent the release of material from the ruptured organisms .
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