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Sunday, December 29, 2019

Just do it!

https://phage.directory/capsid/raising-awareness-among-doctors

https://phage.directory/capsid/raising-awareness-among-doctors



Well, it has come to this. I really will just go with a friend and go in search of Bacteriophages and film the experience and see who we meet along the way. February 2020 (whoops, I had incorrectly typed 2019 before) seems a good time!

All my efforts trying to organise a planned visit/treatment have been in vain, so I will invite one of my besties to come along with me and fly to Europe in search of a cure.

The reason it is difficult is that there are many people desperate to try phage therapy and the three most famous centres of phage research and treatment are overwhelmed with requests from foreign patients. The world is not short of sick people affected by antibiotic-resistant infections, which is exactly why the World  Health Organisation is so concerned about it; https://www.who.int/antimicrobial-resistance/global-action-plan/en/

I would have thought myself to be a perfect patient for scientists and doctors wishing to treat people with antibiotic-resistant infections. I am relatively healthy, mobile, have an infection that is easily accessible (through inhalation), easily monitored, and am not likely to die overnight from my infection and have a good chance of returning for follow up treatment or testing. Plus I am guaranteed to culture other antibiotic-resistant infections regularly over time giving treatment centres a reliable guinea pig that is known to them which surely has its advantages. But, there are many people in the world with Cystic Fibrosis like me.

Why do I still want to go with no guarantee for treatment? I will film and document my search for treatment and on my return discuss with doctors and scientists and prepare footage and material for the documentary.  What's in it for me? I want phage therapy to be available to me just like medicinal marihuana, and raising awareness about it is very important. Even if I were to be successfully treated there is a great chance I will be reinfected with the same or other strains of antibiotic-resistant lung infection within months. Hopefully, the next infection I get can be treated more effectively with standard antibiotic treatment. What makes me survive this hardy strain of pseudomonas aeruginosa is my alternative health supplements like Indrepta C: http://cysticfibrosis.com/indrepta-c-now-available-nonsense-mutations/ which helps me tremendously, and my adherence to what I believe to be a healthy and sustainable diet and lifestyle.

To cut the costs down I think it is best to just do the simplest thing, and that is to fly to Wroclaw in Poland, see how phages are used in practice by visiting a  few pharmacies, maybe see a doctor, and visit the Ludwik Hirszfeld institute, and then travel by rental car to Krakow in Poland where due to the enormous demand for phage therapy the L.Hirszfeld Institute recently opened an experimental phage therapy branch as well. Next stop is Brussels where phage therapy has been legally allowed as a treatment option where I will visit a doctor and seek help for my current infection and try visit the Queen Astrid Military Hospital where the national phage library is maintained.

On my return, I will discuss my findings with doctors and relevant scientists and doctors at the Royal Hobart Hospital, Monash University and the University of Tasmania. Then I will seek professional help in putting the documentary together!

Any feedback or suggestions always welcome by emailing me at suggestions@coughing4cf.com !


GREAT SHORT VIDEOS TO WATCH



Interesting new articles;



To help with the project please show your support by donating to the fundraiser at https://www.gofundme.com/f/phage-or-fail-with-antibiotics




Wednesday, November 6, 2019

New Plan for 2020


Finally! Another update. I am sure you are all worried about what is happening with this documentary...

Appendicitis!

I had an Appendicitis Scare in the past few months. Because my lungs are so sensitive/awkward an appendectomy was not performed. Instead, I was first admitted to a regional hospital but eventually went for admission at the Canberra Hospital.  The final outcome; I was twice treated with large doses of IV antibiotics and the appendicitis is gone for now. It is expected to come back, which is totally normal, so they wish for my gut to fully recover and get over the infection before removing it later this year or in January through a laparoscopic procedure.  This means full intubation will not be required if all goes to plan.

I was hoping this situation would perhaps qualify for an emergency TGA approval to improve my lungs with Phage Therapy before the procedure, but due to hesitance of my health providers to fully commit themselves to phage therapy, and the dim outlook of getting TGA approval by the medicos involved, this opportunity has now kind of passed.

NEW PLAN

But we NEVER GIVE UP! Even though the preferred option of Yale treating me for the documentary seems to have gone out the window, I have formulated a new plan:

In Search of a Phage - The fight against Antibiotic Resistant Infections gets on the road.

Early

In early 2020 I hope to travel to Tbilisi in Georgia. I will go to a pharmacy and ask for a phage preparation to treat my Pseudomonas Aeruginosa lung infection. They may or may not give me something suitable. Chances are they will refer me to the Eliava Institute of Bacteriophages or to a local doctor. I will see what happens and go with the flow for a week, during which I may also visit this legendary institute where the world's largest phage library exists.

Next, I will travel to Wroclaw in Poland, where the next most famous bacteriophage institute is, the Hirszfeld Institute of Immunology and Experimental Therapy.
Here I will do the same, spend a week or so in search of Phage treatment.

Jean-Paul Pirnay
Qn. Astrid Military Hospital
And then my last destination is in Brussels where the 'Koningin Astrid Military Hospital' has made leaps and bounds in phage therapy. In Belgium they now allow Phage therapy. My strategy here is to go to a GP and explain what I have done to get rid of my pseudomonas infection. They will do a sputum test and see what is happening with my infection and will prescribe a  magistral preparation and ensure that the infection will definitely be treated and I can go home with an ongoing treatment plan.

I now envisage the documentary as follows:


  • Start with my CF team explaining my infection (futile hospitalisation and ABX treatments)
  • Switch to scientists at the University of Tasmania and Monash University explaining bacteriophages a bit better*.
  • Get on the road and in Georgia hear a little about the history of phages* before proceeding to me making an attempt to get treated with phages. 
  • Travel to Poland where we will hear about the successful application of phages in WWII on the battlefield and why there was perhaps not a 100% success rate there, hear how many people visit the Ludwik Hirszfeld Institute from abroad, and briefly discuss why Phage therapy is not accepted in other countries***.
  • Travel to Brussels where we will speak to scientists and medical professionals, such as Jean-Paul Pimay pictured above, at the Queen Astrid  Hospital who will explain why it is now permitted in Belgium and how it was approved for public use, and explain why in Australia and other countries it is still not accepted.
  • Back in Tasmania I will see my CF clinic, get a sputum test and lung function test and ask why we can not do this in Australia yet and when will it be possible. With my daring trip, taking the phage preparations in foreign countries, not one side effect was noted or warned against,. It was much cheaper compared to any hospitalisation for IV antibiotics and there are no serious side-effects noted over the 80+ years of use in  Eastern Europe or in the rest of the world over the last decade or more.

Hopefully, this documentary will make a big difference to the acceptance of Phages.


Thank you for your patience, hanging in there with me, and please pass to anyone who may be battling Antibiotic-Resistant infections!

Remember the Fundraiser to fund the Documentary is here: https://www.gofundme.com/f/phage-or-fail-with-antibiotics


* "Since time immemorial, phages—the viral parasites of bacteria—have been protecting Earth’s biosphere against bacterial overgrowth. Today, phages could help address the antibiotic resistance crisis that affects all of society"... 

** Discovered early 1900s and was replaced by the easier to use Antibiotics except in Russia and Eastbloc countries where Antibiotics were hard to get, hence phage therapy successfully continued there till today. 


*** Phage therapy does not fit the western clinical trial model as billions of phages exist naturally and each one is only effective against a very specific bacteria. Clinical trials will not work for trials that demand one medicine to be tested on multiple patients. Phages are a tailor-made (often per case) medicine.

Tuesday, July 2, 2019

Waiting on FDA approval

Hi everyone,

We are anxiously awaiting word from the FDA to approve my bacteriophage treatment at Yale.

Because phage therapy is still not officially cleared as an official treatment on humans in the western world, use of them must be applied for before researchers or doctors can use them on a patient, and that includes research.

Just to recap. Phages are the millions of natural enemies of bacteria. They are viruses that cull bacteria populations. If it wasn't for bacteriophages our sewers and compost bins would be overflowing with green ooze :)  Like any overpopulation, disease/viruses ensure population numbers are kept in check.

Bacteriophages are highly specific (hence minimal side-effects), and one phage cocktail that may kill the pseudomonas infection in my lung, but not the pseudomonas infection in someone else's lung which may require another combination of phages because the bacteria came from another source, and is, therefore, a different genotype.  Because phages are all unique they cannot easily be classified as a medicine because they really are a family of bacterial agents. For every patient, a unique phage cocktail has to be prepared from a Phage Bank. Exceptions are of course if it is the same bacteria that has infected many, say with a hospital infection.

With phages not exactly qualifying as medicine and one phage cocktail not curing all infections as similar as they may seem, it is very difficult to conduct clinical trials where historically one medicine is tested on a number of patients. Even if you had a collection of 30 people with Cystic Fibrosis and with Pseudomonas lung infections, each infection is likely a different genotype and requires a  different phage cocktail to treat. Biochemists test each person's bacteria with a range of phages and narrow down phages that are effective specific to each case. As bacteria mutate and gain resistance, the phage cocktail needs adjusting periodically. It is not one pill for all solution. It is a tailored treatment. Companies like AmpliPhi in the USA and others are working on creating more universally applicable cocktails which may get annual 'updates' just like annual flu shots do. Other researchers are trying to engineer artificial phages to gain optimal results for more infections.

Just a reminder, bacteriophages are not a recent invention,...Cocktails of phages were used therapeutically in Europe and the United States during the early 1900s pre-antibiotic era, used in the fight against the bubonic plague in Southeast Asia, dysentery in France, and cholera in India. Phage use is still prevalent in Russia and Central and Eastern Europe today. In the West, phage therapy was abandoned after broad-spectrum antibiotics came on the scene.

https://www.nature.com/articles/s41587-019-0133-z

Lets hope I get the call soon so that I will still be healthy enough to fly the 15000 kilometres to the USA! I would hate to have another 2 week hospitalisation to get pumped full of antibiotics which hardly addresses my Pseudomonas aeruginosa infection and which are starting to give me nasty side-effects!

As soon as I get the call with a date I will contact the press and we will need to scramble for the $$$ to make up the target figure required for the documentary!

If you hear of anyone who has antibiotic-resistant infections, Cystic Fibrosis or anyone who may be interested please pass this website to them!

Thanks for your patience and support!

Walter----

The previous adventure!

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