there is a government petition to make Phage therapy available on NHS. Dont know if it can be used in UK.
this petition finishes tonight at midnight with government business and will not be opened unless more that 100,000 signatures. I
have checked and there are 111 if that is correct hen there is no chance.
that is a great pity. It could be a life saver
What is phage therapy? x
This might help:
genengnews.com/insights/pha...
it is revolutionary but it has to be tuned to individuals to work. One day it might be able to produce a more generalised treatment with genetic editing.
ethz.ch/en/news-and-events/...
you do find some interesting sites . thank you .
I have never got used to reading from screen and usually have to print out to absorb it properly. I will try again tommorow.
Thank you x
all I know about this is what i have found on various web sites
Very basically a phage is a virus that can inject its dna/rna into an organism and that organism will then reproduce the phage dna/ rna which is then released, and kills that organism abd others of the same ID it is specific to that organism where it finds a receptor which admits this process.. it is specific to that organism, so unlike an antibiotic will not kill "good" organisms.
I First find your phage. There are many in the environment. in water , seawater and sewage ! If you have a culture of the organism as a lawn in a petri dish and drop a solution of diluted sewage on that then a phage if present, would show by dissolving a small spot on that lawn culture
. Hey Presto. That is just the start. a lot more work refining the process in diffeerent ways. some have been altered genetically before use.
Organisms can also be identified by using labelled phages. I do know that MRSA strains are identified by using labelled phages and have been done so for many years. i expect the same applies to other organisms perhaps pseudamonas so it has to be specific to the actual strain. Actually dont know about that, just theorizing but why not. ?
I have been told the US navy have a collection of about 40, 000 different phages. it takes a long time to collect those but in the futureif there is a library of known phages available for reference ?
i have read In Georgia they have used thes e for many years , before antibiotics arrived and phages are available at a pharmacy as a cocktail of local organisms .
I hope this helps.
I registered with the clinic in Georgia which taylors the phages to your bacteria and supplies the drug. It is very expensive and unfortunately so far those in the West who have gone down this route have found that over time the bacteria learn to evade them. So as with antibiotics, first treatment can be effective but follow up treatments not so much. There is research and a few studies in mice and humans going on in the US and now here. Given that we are in dire trouble with abs it would be good if something could come of it. At present I decided that the probable results didn't warrant the expence.
you were brave trying that then I am soory it didnt work for you.
. we have to find something - Or we die out like the dinosaurs !
do you know if they were refining the phages in any way. The ones used successfully were genetically altered in some way. the were fairly recent so no chance to see if
resistance develops. I have read too that the phage is altered so that the bacteria does nt reproduce phages ad infinitum and the bacteris is killed without releasing an excessive load of material and the macrophage cells in the blood hoover up the dead bacteria in the normal way. could that make a difference to developing resistance ??
I didn’t try it in the end. Too expensive for an uncertain result. They are looking at creating artificial phages as well as genetically altering existing phages. Of course we have to remember that phages were used because there was no money for antibiotics in the old eastern block and as my consultant (a true bronch expert ) said. ‘Eastern Europe and Russia have never been known for the quality of their lung health’.
You never know, now that Western money is on stream with a potentially huge prize for the drug company which wins the race, there could be something good for us in the future. I’m not holding my breath. The road from concept to patient is a long and difficult one. Ten years ago I trialled inhaled cipro. There was no doubt that it worked amazingly. The FDA and other licensing bodies are still insisting on further tests.
I'm undergoing the BCG vaccine treatment for urinary bladder cancer. Please correct me if I'm wrong, but I believe the idea is to infuse weakened (attenuated) tuburculin bacteria directly into the bladder to cause an immune trigger to make macrophages...then the macrophages not only go after the BCG but any neoplastic (cancer) cells as well.
Immunotherapy seems to be developing at a rapid rate...I think they were trying the same thing with certain lung cancers
I'm two years cancer-free next September (2020) and can go on the double lung transplant recipient list.
I don't know anything about cancer treatments and so couldn't comment on the treatment that you are undergoing. I do hope that it helps you and wish you all of the best for the future.
i can Undestand your consultant 's comment about eastern europe but how much further have they gone with developement or were they still using the techniques developed pre war. I do not know anything about the research in those parts of the world .I cannot remember when we started using ciprofloxacin in the lab.
If they will not licence it for inhaling is it because of the side effects . Can inhaling reduce the side effects of drugs generally?. i am very ignorant about this.
The clinic in Georgia is using phages in the same way as they have always done as far as I can see. All of the developments are coming from the West so there is hope. There are quite a few antibiotics which are nebulised succesfully against pseudomonas if the patient can tolerate them. Cipro is the only truly effective oral antibiotic against it and this is why it is a good candidate for nebulising. I have been taking it since 1986 when I became colonised with pseudo but it was probably used before then. I believe that there are a few of us on here who trialled inhaled cipro at its various stages and tolerated it well. And it worked! Why they continue to refuse to licence it remains a mystery- to my consultant as well. I suspect that it has more to do with the fact that unlike other inhaled drugs which could be witheld from non cf bronch patients on the grounds that there had been no research specifically into its use for that, cipro has been trialled in ncfbe from the start and once approved will have to be available. Colomycin has been available for a few years, together with tobramycin, after consultants pressurised for ncfbe trials. This came years after cf patients were given it as a matter of course and we are still denied tobi, which is a more effective form of tobramycin. Sorry for the lecture but I hope it explained a few things.
Please do not apologise. On the contrary. I have always had a " must know" mentality. I need to keep my brain working and so develop interests. I realise now that i worked o n a need to know basis, but with so much to do that there was no time to learn more , So now I am a compulsive collector of information. Always welcome more. *
When you say pseudo do you mean sp. Or pyocyanea. ?
I think that different hospitals have their own antibiotic regimes but i do not understand why if they did a trial with good results that they do not adopt it. Can only be the cost. I am appalled at the cost of some drugs, routine drugs, these days. I know the drug companies have to make a profit to invest in more research but it doesnt seem ethical sometimes.
Thank you for the info.
The pseudo is pseudomonas auraginosa. The trial are done world wide with cerain hospitals acting as centres for the trial and collecting data to send to the sponsoring drug company. If the various levels of trials prove that the drug is safe and works, then it is submitted to national licensing bodies. In the UK we have another level of regulation. NICE. Even after a drug has been licensed in other countries they can decide that the drug is not suitable for patients with certain conditiobs.And yes, I believe that this is diwn to coat. Non cf bronch patients are denied so many drugs and services which are given as a matter of course to cf patients, even though many of us trialled those drugs for cf s.
I made a mistake about pyo. Pyo was our general term working for pseudomonas. Mind went back 50 yrs ! Of course i meant aeruginosa
Nothing about nhs is fair. And not enough is known about bronchiectasis, it is the poor relative . I wasnt diagnosed until long after i had finished work at 60. Before that it wss 'industrial asthma' for years due to using chemicals. The fact that i had a lung abscess wasnt taken into account at all.
. I read the resp cultures from hospital and GP specimens but only once remember a diagnosis of bronchiectasis. Aways CF children who did not live long in those days until lung transplants and better diagnosis. In fact my step grandson was diagnosed with CF at 2 yrs old. We had all that trauma, It was a death sentence for the parents. in fact he had extreme allegies , a worry, but with care a normal life. He is 40 now with children of his own.
I have learned so much since joining this forum , and realise now how little i knew in those days. There has been a lot of progress over the 20 odd years since then of course.
Thank you again for all the information.
Oh thank you but it's above my head and just makes it ache x
Looks like most of us have never heard of it, so if you want backing you'll have to fill us in.I'm pretty sure that we'd all be interested.
Thin skin from steroid use
Salbutamol Inhaler not used as a reliever anymore?
Salt Therapy using a CPAP machine
flutter device used to improve breathing
Too many antibiotics?...anyone using probiotics?
