Wednesday, February 26, 2020

Moving right along...



Well, well, well. Conclusion after visiting Wroclaw. My intention was to visit a country and a clinic where I understood people were 'routinely' treated with Phages. The institute in Wroclaw has been supplying phages to Polish hospitals for almost 50 years, and from interviews, I have seen and google searches I have done I had believed that phage therapy was much more used here in Poland than it now appears. This would have been significant because it is in the European Union and operates under European medical protocols.
Visiting the Phage Therapy Unit of the Medical Centre at the Institute of Immunology and **Experimental** (!) Therapy (pictured above) I discovered that it is a bleak and empty academic feeling unit, and not a bustling medical facility as I had expected. There were no patients or people coming or going, and the receptionist I was able to speak to spoke good English but was keen not to be filmed or recorded. She confirmed that Polish people do not get phage therapy except under very special circumstances and at their own expense. The cost of treatment is about €1700 but this is, of course, a ballpark figure. She would see if I could speak to one of their doctors. A doctor did contact me, but he was wrongly informed, thinking I wanted treatment, and that a consultation meeting to explain the treatment procedure was possible in March for which cash payment was required. This is not really what I am here for, though I would love to get phage treatment for my infection. I emailed to explain. Over the past 6 months, I have also communicated with the Georgian Eliava Phage Therapy Center, and I could get nothing but treatment discussions with them and no response to interview requests.
I came to Poland to interview people about phage therapy, about commercial phage preparations, how many people they treat, what infections are they most successful with, its general use in Poland... How many Polish people are treated annually with phages in Poland etc.
In Australia no-one knows anything about phages. Just a few scientists, but not the medical world. But I now know that it is almost the same in Poland.... It is not for the average patient. It is special and experimental here too, just like in the rest of the western world. I will try travel to Ukraine later this week (across the border) and see how they use it there. But if I show people at home it is used in Ukraine it will not have the same effect as showing they use it in (EEC) Poland. Poland would have been very believable. Australians will look at Ukraine, like they would at Georgia (former USSR), that phage use is similar to say snake-bile in China... Good for them but nothing Western, in other words not believable. If I had evidence it was used in Poland we would all be more convinced!
Tomorrow we leave for Krakow, East Poland, and I will see if I can catch a train to Ukraine for a day while Cindy awaits my return in Krakow. Being so close I want to have a quick look at a pharmacy there and purchase some commercially available bacteriophage-based medicine.

Sunday, February 23, 2020

Welcome to Wroclaw

Without any further problems we drove to the city of Wroclaw where the famous Ludwig Hirszfeld Institute of Immunology and Experimental Therapy is situated. The Phage Therapy Unit in their Medical Centre (IIET PAS) has been conducting research on the biological properties and the application of bacteriophages for several decades. They isolate bacteriophages and prepare phage formulations for different hospitals in Poland for their respective phage therapy since the 1970s - see their website - www.iitd.pan.wroc.pl/en/OTF
At this stage it has become clear to us that although phages appear to be commonly used in Poland since the institute has supplied hospitals since the 1970s, the three different pharmacies we visited today only know of antibiotic prescriptions and standard cough medicine. Worse still, the pharmacists themselves are very puzzled by phages, even when I show the products on the internet or the website of the institute. One pharmacist went as far to say that these are only for medical experiments by scientists and not used in the Polish medical profession. This is exactly what I get told in Australia by my doctors. Yes, I am a little disappointed and very confused. I have seen documentaries from SBS etc. where doctors from the institute in Poland were asked why this therapy is not available in other European countries to which they have no answers as they operate under the same European protocols according to the 'Declaration of Helsinki for the Medical Profession Act - 5th December 1996....
In any case, we may need to visit ex-Soviet countries such as the Ukraine next door... This was not part of the original plan but maybe worthwhile as I really want to see how phage-based medicine is dispensed in some countries, and we are so close here.
Cindy and I did an introduction to Poland session with Marta, a young professional (an Airbnb event) in a local cafe for 2 hours and have established a good contact to help us in case we run into trouble or need some translation help.
My health is holding out although I am coughing up more blood. I would love to try some phage options ASAP. Just to recap my expectations, a commercial phage preparation for my pseudomonas aeruginosa is likely to lessen my infection temporarily, but to eradicate my infection I will need specific targeted phage therapy in conjunction with antibiotics over a period of weeks or months which is not something I'm expecting to get on this trip. I am however expecting to get some phage treatment and obtain a lot of relief, including an albeit temporary but significant increase in lung function.
Here is me coughing blood...
https://youtu.be/zpO87_Uzvdg

And PS, yes there was an incredible military parade in the old town here in Wroclaw. No idea why...

Friday, February 21, 2020

Arrival in Warsaw


Yesterday late afternoon we arrived in Warsaw. When we picked up the rental car we were given a fancy Mercedes instead of the budget choice we had arranged. This is normally wonderful, but... We got the keys in the airport terminal and headed down to an attendant-less dark garage. It took us 20 minutes to find out how to change seat position and controls and acquire the bare minimum car knowledge required to drive. Not easy amongst all the buttons, switches and digital displays. Even the steering wheel is on the wrong side of the car. Easiest of all was putting on our fancy magnetic phage or fail magnetic door sign.

By now it was probably 6 p.m. and we headed into Warsaw City, (www.booking.com/hotel/pl/prudentia-apartment-wars.pl.html) to find the hotel we had booked through the airline. The navigation took us to an obscure set of buildings in the city, none of which looked anything even remotely like a hotel. The phone number we had had an answering machine in Polish, and the friendly local people trying to help us were also unable to find it. we tried a few nearby addresses and drove aimlessly for about an hour looking everywhere before we decided that this city was too much for our tired brains. The reason we had a City hotel was so we could have a few hours in the historic Old City before driving to Wroclaw in the morning. We headed off West at about 8 p.m.

Amazingly the highway here has 140 km per hour speed limit and so in no time we were clear of the City and stopped at a roadside McDonald's. There we used our phone to book a nearby Hotel.

The nearest one, 2 km away spoke English and we booked a room there. Due to the 8 lane motorway we had to drive 30kms around to get there but that was no problem. The hotel was palatial, complete  with white marble stairs but no elevator. We happily carried our heavy suitcases to the second floor and crashed out exhausted.

The day before in Amsterdam I had to cough up blood (freaking out supermarket staff and everybody around me) so I have to make sure I do my meds/therapy/exercise seriously and not cut any corners. Can't wait to go into a pharmacy today and see what they've got for phages

Thursday, February 13, 2020

STEP 1 - Leaving for Canberra

Today is the day!

Cindy and I are flying to Canberra on Frequent flyer points and I have relatives and friends there. Two nights in Canberra will ensure I have everything with me that I need. Currently, my luggage weighs 28kg, most of which is medical equipment and medicine. My nebuliser, my oxygen concentrator (the red bag), and enough medicine to see me through 6 weeks, just in case we need to be quarantined for 2019-nCoV - the Corona Virus. Cindy hasn't got that much so we can even out the suitcases at some point.

In Canberra, I will find out what I have forgotten... Hopefully nothing. I have made lists and been methodical and careful, just like the other 20 times when I did forget things. There will be a day in Canberra to sort out any issues.

Next stop will be AbuDhabi, via Melbourne. There we plan to catch our breath for 2 nights at a complimentary free stopover hotel before flying to Amsterdam, Two nights with my cousin Mike there making sure I am healthy and have no flu symptoms before flying to Poland where the work begins! It seems a silly way to do it but when you have fickle lungs it is the safest way to go I think, and as it happened with Etihad it was also a most affordable option from Canberra, and don't forget we are doing this on a shoestring budget!



Just a reminder, I am paying my own airfares and treatment costs if applicable, and fundraising documentary funds I use to help subsidise Cindy and incidentals and travel for the documentary and then on our return, we need the big bucks ($10-30k to get professionals to help us assemble the documentary from our clips and recordings. Please help us make the documentary and tell the world about our investigation into Bacteriophages to help fight antibiotic-resistant infections!

https://www.gofundme.com/f/phage-or-fail-with-antibiotics

And STOP PRESS listen to this informative easy to understand podcast to understand Phages.


  • Htttp://drmikehutchinson.com/bacteriophages-with-dr-sulakvelidze.php



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