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Coughing 4 CF

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24.01.2022 If phages are allowed to be used on ready to eat foods, and are not on the poison schedule at all, they are non toxic, why can we not get the basic phage based medicine in the pharmacies? It will seriously reduce doctor visits and hospitalizations! Why else would people from the Ukraine, Georgia and other ex-Soviet countries that are working abroad take these meds with them?? Really, no reason not to have them here! Quoted from the USA National Institutes of Health 2 years ag...o: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5923499/ .... phage biocontrol is arguably the most environmentally-friendly antimicrobial intervention available today. Most, if not all, currently-available commercial phage biocontrol products contain natural phages, i.e., phages isolated from the environment, that are not genetically modified. Many of these preparations also do not contain any additives or preservatives; they are typically water-based solutions consisting of purified phages and low levels of salts. Several phage preparations on the market are also certified Kosher and Halal and are available for use in organic foods (OMRI-listed in USA; SKAL in EU) (Table 2)....

23.01.2022 Scary stuff. We are bunkered down in an empty luxury hotel on the beach and requested no room service! Cold and windy outside but we feel very safe here. Plane home 18march. We met one person yesterday who was very excited about bacteriophages, we interviewed her on the camera :)

21.01.2022 Interesting day yesterday... Found the Queen Astrid Military Hospital. Not being military myself I did not expect to get help there, but was hoping to learn about Phage Options in Belgium and be referred to a doctor or surgery or somewhere where they could help me or tell me about how Belgium doctors use it now that it is allowed. The heart of Belgium Phage Therapy is here at the Queen Astrid! It took some effort but with some internal help I found one of the key research sci...Continue reading

21.01.2022 Cindy and I are home! When we flew in from Amsterdam where cafes and restaurants etc were closed the airport security did a very close and personal thorough body frisk on me without even wearing a mask!!! I checked with his supervisor and she said it was ok! I think that was just as bad as me landing in Sydney eventually and being told to home isolate for 14 days and then let loose in the airport and mingle in queues and cafes facing cancellations and delays as we flew from S...ydney to Melbourne and eventually Tasmania - 12hrs later - where we went into isolation and can't go for a dog walk even at midnight. Surely an identifying tag (esp at airports) wouldn't harm so people know they need to stay away from us. I tried to steer clear of people at airports the entire way, but obviously touched and breathed on lots of surfaces. I noted the Australian public is still very blassez about social distancing. One foreign woman with child was hysterical on one flight because aircrew and everyone seemed to be continuously crowding her and she was scared the crew would pass the virus to her or/and child! Even the supervisor stood too close to her trying to comfort her as she was yelling through tears for the supervisor to keep a distance and leave her in peace. I think masks wouldn't hurt!! Not sure why we aren't wearing them just to prevent spit and droplets coming from our mouths, never mind the mask not being the right grade! Noone has been in touch with us since we've been home bound (almost 3 days now) no testing nothing. Given most identified cases came from overseas you'd think the authorities would be more cautious with us and test us people coming home from OS and if positive at least alert people who were on our flights. If we end up with COVID-19 I still blame the pat down in Amsterdam Schiphol, the only close contact I've had on the trip, even Cindy hasn't come that close to me!

20.01.2022 Well, it's been a long time since my last update. Last I left you we were in Belgium when we decided the Corona virus was putting an end to our bacteriophage efforts. I was no longer coughing blood since I started taking the Ukrainian over the counter phages which had pseudomonas aeruginosa as one of their targeted bacteria. We went to the Netherlands where we stayed with friends, and when the threat became too big we eventually booked an expensive hotel in my hometown of Noo...Continue reading

19.01.2022 Seriously, you must listen to this and listen to the lyrics. Bloody brilliant :) Thanks Andy Lipman!!! https://youtu.be/VyrqrjcPDq4

18.01.2022 Tasmania is hosting the Australiasian CF Conference in August 2021 and planning is well underway. CF TAS's CEO, Paula Wriedt needs your help in ensuring the conference will be relevant to the CF community. Please take a moment to do this five-minute survey on what topics you'd like to see discussed at the conference. hhttps://www.surveymonkey.com/r/2021LayConference

17.01.2022 The Australian government is urging people to come back to Australia. We are flying within 24hrs. Ready for 14 days isolation in Tasmania.... :(

16.01.2022 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...Continue reading

16.01.2022 Look, an interesting website on phage therapy! Details how to get phage treatment and where! I had not seen this page before. Google is **funny** when it comes to showing internet search results. I notice my search results are very different here in Poland, and new and interesting pages are coming up. http://europhages.com/en/or-buy-bacteriophages/

16.01.2022 Look at phages being used in the USA to treat the same antibiotic resistant infection I have. Despite phages not fitting the traditional mould for clinical trials due to their nature, more phage therapy trials for cystic fibrosis are being funded with a US$5M grant from the Cystic Fibrosis Foundation, the US based body representing CF patients worldwide, the same people who helped fund Vertex to invent revolutionary CF drugs like Trikefta/kalydeco etc that have transformed 90% of CF patients into relatively healthy people! https://www.nature.com/articles/d41586-020-02109-7

15.01.2022 Just in case you didn't know... "Phage products are regularly approved around the world for food processing and agriculture etc. As the natural enemy of bacteria, phages specifically kill pathogens like Salmonella and Listeria, and leave the good ones intact. They are green, smart and easy to apply on food via spraying, misting or dipping. Phages can also be used directly on food contact surfaces or in the processing environment. They are easy to apply on food via spraying, misting or dipping. There is no effect on taste, colour or smell so there is no need for product reformulation. As a processing aid it does not require labelling..." https://phageguard.com/news/

15.01.2022 Once safely arrived back in Krakow Cindy and I booked a flight to Brussels for the next morning. Because of my lung bleeds we decided we should not muck about and be fly straight to where I think I can get phage treatment. We arrived the following evening at an airbnb next to the airport in Brussels. That night I managed to make a doctor's appointment in the local area. I figured going to a quiet village surgery the doctor would have more time to listen to me as opposed to a ...busy city surgery. Phage therapy was only allowed here in Belgium less than a year ago go and of course doctors are not trained in that area. I can't expect to just walk in and get it of course as the doctors need to to be aware of this kind of treatment which is not common knowledge yet. The kind doctor I visited was very patient and interested and said as a general practitioner she was not able to help me but gave me a referral to a specialist. She suggested I go to a hospital emergency department. The hospital I will go to tomorrow is is the queen Astrid military Hospital the centre of Phage Innovation in Belgium. I hope they will treat me!

14.01.2022 The report is almost ready. Here is a short version. With the full report we hope to make an audio visual or documentary presentation for YouTube at least. ... But this is a start!

13.01.2022 No recurring bleeds and lungs feel great. I think the ukraine over the counter phage based medicine is working for me! Also, tried to test the reciprocal medicare arrangement Australia has with Belgium to see if I would get a reimbursement for my doctors visit. But alas, the office closes at noon on Fridays... Tomorrow we head to Holland.

12.01.2022 I jumped on the train to Lviv in the Ukraine. Three hours to the border, changed to a wide track train, got checked for flu symptoms by soldiers and arrived about 730pm Friday night On my way into town I enthusiastically stopped at a few pharmacies and discovered language is a major barrier here. Long story short, I visited about 5 pharmacies who all sold phages and phage derived lysate products. Still it seems to me it is not the most common cold, cough and diarrhoea medic...ine that I was expecting it to be. Perhaps this is because antibiotics for the average person would still work a lot more effectively than a commercial phage preparation. Primarily because phages need to be individually matched to infections, and a random cocktail will only work for the most common infections. I found one person who spoke good English and he explained he gets the phage based medications and sometimes they work in a matter of days, but when they don't he goes to the doctor for antibiotics etc. This indicates that without local phage clinics and efficient specimen pathology services individualised phage treatment (Magistral Preparations) would be difficult and hence antibiotics would be more suitable. To really understand the situation I found the Pharmacy Museum here but the old women with their painted hair were seriously unfriendly and borderline hostile. Not interested to say or do anything. Being a functional pharmacy as well they were not interested in helping me and just took my money and pushed me into the museum. I even asked if I could see a doctor somewhere but despite understanding the word doctor just walked away from me. In any case, I spoke to people, bought various phage preparations, really enjoyed the overnight experience. I will read the medicine inserts and labels carefully when I'm back in Poland. As it happened I (discreetly) coughed a fair amount of blood again, just after entering Poland whilst changing trains. Phage treatment cannot come fast enough for me. I think I need to get us to Belgium sooner rather than later and see a doctor. The only thing I took here other than my usual meds was a nasal eucalyptus spray, which I doubt caused the bleed. I've also been doing enough walking and nebs, eating healthy and I must say I feel great with little coughing even. After the Hemoptysis episode I took the first class train back to Krakow to avoid the crowd. Fortunately it was only a fraction more expensive. I think the reason it is not popular is because the first class wagon is old fashioned and has no power points at the seats!

12.01.2022 Wow, so happy, my first NDSS supplied Continuous Glucose Monitoring patches! For years my extended family has helped me pay for these at $250/month!! Makes a big difference in sugar glucose management!

12.01.2022 FREE for 2 days. Cycling across Europe with Cystic Fibrosis https://www.amazon.com/dp/B00ALF9CBC Coughing the Distance the book is FREE to download for Kindle users for 2 days Friday, September 4, 2020, 12:00 AM PDT till ... Saturday, September 5, 2020, 11:59 PM PDT. For Australian East Coasters that would be 5pm September 4 - 5pm Sept 6. For those who don't know, this is a book about me and a few good friends riding across Europe with bicycles - from Paris to Istanbul. please leave an Amazon Review!

07.01.2022 Hang tight. A wrap up final report on the Phage or Fail trip is coming soon! It contains what I think is great news for everyone, those without CF included. After the phage report is finalised we will put the video footage together to end up with a meaningful doco of sorts! That may be months away, a daunting task right now :)

07.01.2022 From my personal profile last week; Time for me to remind people about phages. Phages would make a world of difference to me. Cystic Fibrosis, a genetic condition that amongst many issues brings about severe lung infections. People with CF typically live on permanent antibiotics and in the end require a lung transplant once their lungs have given in to infection. As you can imagine the side-effects of all the antibiotics is terrible, kidney damage, loss of hearing,... and the...Continue reading

05.01.2022 Woe to that child which when kissed on the forehead tastes salty. He is bewitched and soon must die. I've been looking for this old English proverb for a long time!

05.01.2022 www.npostart.nl/dokters-van-morgen/25-05-2020/AT_2128558 Dutch TV had a wonderful documentary on Phages again this month. It is in Dutch of course but was very informative. But let me get back to this 18-minute TedX talk by Heather Hendrickson, a Senior Lecturer at Massey University, from 4 years ago, a most interesting talk about phages;... www.youtube.com/watch?v=p2ngpKBPfF8 This is what it is about (it is all in English): In a world where bacteria are increasingly resistant to antibiotics, the discovery of Bacteriophages could assist us in controlling life-threatening bacteria. At min 8:30 Heather shows an animation to show how bacteriophages work, and how they are 'auto dosing', At min 10:30 undergraduates hunt for phages and find phages for Ps.Aer. as in my CF lung infection. At 11:45 kids finding phages... At 14:15 The FDA has already cleared phages for ready to eat foods like cheese and sausages, raspberries and kiwifruit in NZ. Note this talk was 4 years ago!! At 15:35 Can phages be used on humans? In Russa etc phages have been used to heal people for decades but the west is still sceptical. At 16:45 resistance will occur like in antibiotics, but phages also adapt to bacterial changes! Phages have existed for billions of years, resistance is an evolutionary process for both bacteria and phages. We will not run out of phages, unlike antibiotics that need to be developed at great costs... Still looking for video editing expertise, ...