People on here are so very well informed, I thought I'd ask if anyone has information on importing Phages from Ukraine or anywhere!
I have 2bugs in my lungs, pseudomonas Aeruginosa and Klebsiella pneumoniae I've had antibiotics which haven't worked, I believe these two pesky bugs are very resistant to antibiotics. There seems to be quite a bit of interest in developing use of bacteriophages, as antibiotics are failing to clear lots of our infections. Hoping that someone can advise and point me in the right direction.
Ennida
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Lancsrc12
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I like I have bothersome bacteria especially klebsielka. The FDA have in January this year authorised phase therapy to be clinically trialled in the USA so I don't think I would buy anything from Ukraine just yet. This if it works will be a miracle breakthrough in medicine.
Thanks for that, we are really needing some alternative to these failing antibiotics. Let's pray for miracles!!
There is a clinic in Georgia (Eastern Europe) which will tailor make phage therapy to be nebulised if they have one suited to your particular strain of the bacteria. It is very expensive. About £3000 per 10 day treatment. Anecdotal evidence seems that it is very effective on first use but that, as with antibiotic therapy, the bug comes back. They developed this in the communist days because they had no access to antibiotics. My very experienced specialist said ‘ well Eastern Europeans are not known for the quality of their lung health’.
The positive sign is that there are a couple of trials in mice in the UK and more trials in the US. Strangely, the US navy has the largest collection of phages in the world ( they are viruses). About 40,000.
The West has long been averse to persuing phages because of drug company resistance to the cost of producing individual medicines for each patient. With the dire state of the lack of any new antibiotics they are finally being looked at. Hopefully something will come of it for us but I am not holding my breath.
Thanks for the info, I had seen the Georgia clinic but I'm not well enough to travel and it is expensive. There is a report of a young woman treated with Phages at GOSH for children in June this year . She was born with cystic fibrosis and acquired multiple infections. She seems to be almost clear of infection now.
HomeNewsFirst use of pioneering phage virus therapy to treat patient with cystic fibrosis
The clinic in Georgia do it by post. I don't know what GOSH is. This will be an experimental treatment and is certainly not generally available for cf. We watch we wait.
I have just found and carefully read the article. The poor girl had already had a double lung transplant and was overwhelmed with infection in her liver and on her skin. In order to use the phages safely the researchers had to genetically alter them. This would have required specific permissions for one off experimental conditions and be very expensive. It is my guess that this could have been funded by a cf charity. It is good news that Great Ormond Street embarked on this very complex and risky treatment and that she is doing well. It remains to be seen whether she stays well or whether they will be able to fund continuing treatment.
Unfortunately, large scale clinical tests on patients with cf and non cf bronch which could result in general use for the rest of us still seem a long way off. I keep my fingers crossed but my experience of taking part in clinical trials, specifically inhaled cipro, which was proved to work 10 years ago but is still not licensed, leads me to conclude that we won't be getting phages any day soon.
I suggest that you watch for any centres which may begin a clinical trial and find out if you fit the profile to take part. 🤞
Pom there is also some interest now in colloidal silver, NHS University Hospital Southampton I think, an inhaled colloidal silver was given to a cf patient for pseudo aeruginosa with good lasting results, it does not have the side effects of antibiotics, it's been known about for a long time but have you come across it at all?
Yes I have heard of it but always as something which people experimented with themselves. Any bona fide medical interest in a substance is good interest. We do have to be cautious though because cf patients are on a different platform to the rest of us when it comes to trials, drugs and services. The more of us who are watching and noting the better.
I have found the article, written by Southampton University Trust. It concerns an 11 year old boy with cf who was treated with colloidal silver by his parents in 2012. He had some improvement. Unfortunately this is a one off case and they say that there is no evidence of benefit to cf patients of silver. Obviously they haven’t done any large scale trials. Silver was widely used as an anti bacterial before sulphur drugs and then antibiotics became available. Perhaps it is time to look at it again with modern delivery systems. I am sure that so many of us patients believe that the medical fraternity and drug companies are still very lax when it comes to the urgent need to find effective anti bacterial treatment.
I will certainly look out for any trials but may not be accepted due to my age! This is an interesting article on the use of Phages as opposed to antibiotics; Phages seem to keep reproducing until they win.sitn.hms.harvard.edu/flash/
And that is appalling about the dismissal of the successful trials of Cipro but not surprising.
Probably a very good reference point to what phages are and more specifically what they can do in the right environment and attacking a specifically identified bacteria within your own body.I think this is why it is so individually targeted and also why it is not something you can buy of the shelf so to speak.You would probably have to undergo quite an intense regime of investigations to determine a phage that would be of any use to you and of course if one was available.
I am convinced biological engineering is the way forward for all of us but many practical and ethical hurdles will have to be overcome before they are readily available and used to any extent.
I'm so glad to hear so much from you all as still battling against bronch. Little Pom a great help in my case. Will hope to hear more from you more experienced people in the near future merry xmas to you all tonight x Maz
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