Sunday, May 31, 2020

What do we know

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 infections we fight hardly respond to any antibiotics. Yet doctors still admit us to hospitals for week on week of IV antibiotics at great expense to the State. Boy was I surprised when I learned about bacteriophages.

Turns out not even my doctor had heard about them, despite being widely and successfully used in the East-bloc countries for almost a century. Even researchers around the world, in defence organisations, and most universities study them, for human applications even, and our own Australian CSIRO dedicated an entire quarterly Biochemistry magazine to phages in human applications last year.  Phages are a very effective and very safe, and cheap alternative to antibiotics, and unlike antibiotics, no new ones need to be developed all the time because bacteriophages, phages for short, naturally occur in nature everywhere there are bacteria. In fact, there are 10x more phage types than there are bacteria in the world, we are full of them, as we are of bacteria. Out of the millions of types of bacteria, only a handful are dangerous to humans, no phages I have ever heard of harm humans.

So I went to Europe with my bestie Cindy to go and have a look at how phages were used. I took footage with a GoPro and took notes. Of course, we got stuck in the covid19 period which was another story...

Now I need to put it all together in a format that can be watched. Hopefully a 20-minute doco for Youtube I was thinking There are documentaries on phages that have been shown on SBS and US and European TV, but they all deal with miracle stories where people were on the brink of death and phages got them healed in a matter of days/weeks. I have come to realise that although that is totally correct, by the time you have permission to use experimental medicine and lined up the resources to isolate and prepare the relevant phages needed etc takes a tremendous amount of last-minute luck and coordination. Establishing the infrastructure for phage therapy to treat difficult antibiotic-resistant infections is not something that will happen overnight.

On my trip, I saw how people from other countries where phages are allowed, use them. None of them have that infrastructure either, though institutes exist where wealthy individuals can get treated privately. The whole world's medical system has switched to antibiotics it seems. So how are phages working in those countries now?

Simple, they have generic phage-based medicine that work for the less hardy but very common community infections, the kind we in the western world consult a doctor for and we get antibiotics prescribed. Our complaints usually go in a matter of days. In the poorer Eastbloc countries people buy cheap phage-based medicine and most of the time their symptoms go within days AND without having to consult a doctor and without being prescribed antibiotics.  We need this here, and Phage medicine is commercially produced in great quantities already, for millions of happy people, and has been in use for decades and decades without interactions or allergic reactions. Shouldn't we at least have the choice>

And what I have learned along the way as well is that over the past so many years phage-based antibacterial potions are already used in Western agriculture and aquaculture, and in food manufacturing, even sprayed on ready to eat foods, and what is more amazing to learn is that if the food is organic it still remains certifiably organic after the phage treatment is applied to stop people getting food infections from packaged foods.

And another thing, you cannot overdose on them either, they are auto-dosing, and are not listed on any poison schedule, they are allowed to be imported without special permission either from quarantine or customs, just need to be documented and produced commercially in a certified facility. ...  Well, hello people, why aren't we getting them here?

And this is the big problem, pharmaceutical companies would lose an enormous amount of business/revenue, and this is the only plausible reason I see for us not getting it in Western countries. Not only that, but there is also no money in it for them to develop it or market phages because as they are naturally occurring they cannot be patented... But society needs them now!!

I want to educate the world, educate the cystic fibrosis community, educate the doctors! I want a simple documentary to explain the above. I have almost all the material required. Just not the skill to put it all together, but I AM WORKING ON THAT :)  Never give up!

Saturday, April 18, 2020

We are Back

We are back, and completed 2 weeks of self isolation and even got tested for COVID-19!

As you may have noticed we left just prior to the COVID-19 emergency and returned in the midst of a world shut down. This did not make it easy for us to visit medical facilities and talk to people, however, we have some footage to show you and and have found out some remarkable information. I did not go to Europe to seek Phage Therapy treatment. But I was hoping to maybe get an offer, but that did not happen. But many people will benefit from what Cindy and I have found out. We had hoped to make a documentary, but we still have too little funding for a professional exercise, though we have enough good material to open up many eyes. I need to work on my video editing skills now and I say WATCH THIS SPACE (for a video in a few months). There is a full trip review coming up, but for now my conclusion is that;

Phage Therapy of the kind 

I need Individual Phage Therapy, the miracles of which we see in the media, documentaries and many credible sources, is surprisingly not what we all need right now. We need over the counter cheap phage-based medicine for general illness, for everyone. This will act as a filter to reduce doctor visits and antibiotic usage by what I conservatively believe would be a minimum of 50%. Though phage therapy on an individual level is ground-breaking and life-saving for those with hardy antibiotic resistant bacterial infections, it is not something that we can feasibly do in the near future. and we can start with using what is currently commercially manufactured and easily obtainable in some countries and allow that into Australia. Read on!

Medical tourism 

To have phage therapy for those difficult to fight antibiotic resistant infections (YES, we can treat them better than ever using bacteriophages), we would need phage libraries and phage labs. For that to happen in Australia not only do we need a legal framework in place to allow it, but we must then educate doctors, pharmacists, set up laboratories etc. This is expensive and time consuming - though significantly cheaper (and much more effective!) than developing new drugs. It is therefore unlikely that in the next decade this will become a common treatment for everyone. Even in Belgium, Poland, Georgia and Ukraine where phage therapy is allowed, the existing underfunded phage facilities only treat the most urgent cases. Or, for those who wish to just pay for it, just like any medical tourism anywhere, you can fly to Poland for phage therapy tailored to your infection for a few thousand dollars. Would you fly to Poland when you are so sick that western-based medicine is giving up on you? Probably not.

Reduce Antibiotic Overuse 

Do we want to fight antibiotic resistance now? Absolutely. What do we do when we get sick now? We go to the doctor and for anything bacterial we immediately get antibiotics prescribed. How about we go to the pharmacy first, skip the doctor and buy a medication that does not have any claims, except to say it is for prevention or treatment of various conditions, belly aches, coughs, sore throat, pain peeing, anything involving a handful of bacteria harmful to humans - the kind of bacteria you see mentioned on disinfectant or mouth gargle - and you see a doctor if the condition persists. You buy it for say $19.95 and try it. You can put the tablet under your tongue, or the solution on your skin, in your mouth, wound, apply it any way you wish, and the packaging claims it will not generally interfere with any other medications, no known side effects, no overdosing. Would you try that first? This is how phages are marketed where it is legal.

Consult a Doctor when pain persists 

What do we currently try before going to the doctor? We use painkillers and other medicine that mask the symptoms, like aspirin, Disprin, Tylenol, Paracetamol, antihistamines. But they do not stop the problem, they just help ease discomfort while your body heals naturally. All these over-the-counter potions have side effects, can be toxic, and none cure us. They all carry overdose warnings, contraindications, cannot be combined with certain medicine.

Let’s say half of us are cured with a simple over-the-counter phage medicine. Would that not free up doctors? Would that not prevent overuse of antibiotics? Yes it would. And that is how over-the-counter phage products are mainly used in countries where they are allowed to sell them. Some of these are even produced in Germany or Canada, many made in Georgia (the Eliava Institute there supplied all of the former USSR with phage medications), all are made in modern facilities, they all say much the same, with the most relevant warning being ‘do not use if solutions looks turbid’ and keep refrigerated. They come with inserts and are well documented and commonly used by millions of people already.

When can we have over-the-counter Phage medicine? 

We need to allow over-the-counter phage medicine. If you look at some of the useful links at the end of this paper, notice how Phage sprays on ready-to-eat foods doesn’t even effect their organic/biological classification in the USA, Australia and many western countries! These are the phages we are talking about for us! If they are approved for agriculture, aquaculture, food processing and packaging, even for spraying on ready to eat food in our western world why can we not have them ourselves? As soon as the TGA decides it is allowed we could be having these very important bacteriophages available at our pharmacies. Right now, we can get them mailed totally legally from overseas. They are not even on the poisons schedule. See this example

NOW I NEED TO WORK ON THE FULL REPORT AND ADD VIDEO CLIPS ETC... This is not easy for me, but working on it! Watch this space!

And YES, I have been trialing the phages O brought back and just yesterday had my lung function test and a sputum culture taken. The lung function test showed one of the highest lung function results I have seen for years, so I am super happy. Let's see what the lab says about my cultures. Obviously the phage meds were not specifically designed for my bacteria, so I do not expect eradication of anything. As with a 2 week hospitalization, the treatments that make me deaf and poison my system also don't eradicate the infection either!

Wednesday, March 25, 2020

Getting tested for COVID-19

Well, it's been a long time since my last update. Last I left you we were in Belgium when we decided the Coronavirus 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 Noordwijk, seaside area of the Netherlands. We felt safe and secure for 3 nights and then decided to drive to the middle of Holland where there are lots of heaths and forests and we had another two nights in nature away from crowds before driving to Amsterdam for the final two nights prior to our flight home. In Amsterdam, we had a superb Hotel booked and paid for by sympathetic friends (!) where they served room service breakfast as by now cafes and restaurants had closed. Cindy and I rented bicycles and rode around a pretty empty Amsterdam, visiting many museums in quick succession - it's amazing how quickly you can ride past a museum if you don't go inside to look... Cindy managed to twist her ankle as she rushed off the road to make way for a police car with sirens. This was in front of the Torture Museum of all places.

Before our flight, we found the Amsterdam Bos and the Olympic rowing course where we walked for many kilometres in preparation for the long flight home.

Amsterdam airport, Schiphol, was very empty and the security still had to frisk me at very close & personal range not wearing a mask either. Pretty outraged I checked with his supervisor who said he was following protocol and that she would be doing the same in 15 minutes. I felt seriously at risk because he would have surely been infected in the past few days and could now be passing it on to anybody he was frisking like he frisked me. Apart from that, it wasn't too bad in Amsterdam and we got onto an empty flight to Abu Dhabi.

In Abu Dhabi, we went to a lounge to which one could pay for access and there I did my nebulising. The hundred-dollar access fee had scared most people and it was also in a disused terminal of the airport hence we felt very safe there. The $100 fee to get in included the towel for the shower a toothbrush a terrible razor and a very very limited choice of food and drinks, in fact not even a choice really - see below image. But we were safe.

The Abu Dhabi Sydney flight was jam-packed full with Australians returning, and arrived in Sydney at 6 in the morning we all got our flyer about 14-day self-isolation as we exited the plane. But clearly, self-isolation was not in effect until you actually got home. Forget about social distancing when exiting a crowded plane or going through customs it seems. Once at the domestic terminals where it was fairly quiet we faced cancelled and delayed flights as we made our way from Sydney to Melbourne to Devonport, arriving about 10 hours later. People in the queues were not keeping distance at all, staff and crew were also acting just as per normal as if there was no virus at all. Even in Devonport when a staff member asked if anybody had been overseas those half a dozen people were crowded around a small table filling in forms about their 14-day self-isolation...

Cindy and I had a car waiting for us and we drove to James Street where Ree had prepared the home for us and stocked it full of food. Ree had arranged with friends to stay at a beach house far away for the next 14 days to give Cindy and me a self-isolation place. Normally I live in a house with two or 3 others so this was great.

We arrived on Friday night and on Monday morning the mail brought me phage medicine from a Georgia contact.

Monday Cindy was also getting signs of a migraine, vomiting slight cough slight temperature and we eventually called the hotline who deemed us as not testable yet. Fortunately, within 24 hours we got a call to say that my cystic fibrosis was a deciding factor to get us tested. So on Wednesday, we drove out to the hospital with permission of the hotline.

Donning clean new clothing a fresh mask and plastic gloves and equipped with an antibacterial spray we headed outside the house. The testing clinic was pretty much empty and we were helped in a friendly and professional manner. Swabs were taken and we will be notified in a day or two they said.

In the meantime, I started taking the Georgian over the counter phage against pseudomonas aeruginosa and tonight I'm starting with an inhaled colistimethate sodium nebulizer antibiotic treatment as well. Wouldn't it be great if my lung function was better after 14 days of self-isolation with these new phage medications! The walks around the house certainly wouldn't have been enough to qualify as exercise, but it's the least I can do.

And just as an interesting note, on the flight between Sydney and Melbourne was a young family from overseas where the woman was crying in tears telling the crew to keep their distance from her. She was screaming and saying nobody is paying attention to the safe space requirements, not even the crew. The hostess was trying to offer her tea and asking her to calm down as she was screaming 'get away from me, step back'..., which the hostess was just not understanding until the husband sternly said please leave her alone. This is exactly how I felt for 12 hours, and I can assure you I am not fussy about a few inches here or there, and still regularly touch and scratch my face accidentally. If we caught the virus we caught it between Amsterdam and Devonport.

Fingers crossed we are all safe and I'll get back to you all when we get the results back.

The previous adventure!

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