Sunday, 23 March 2014

Phages: 'A Miniature Act Of Piracy'

Hello again Dear Readers! 



Just kidding! 

After a long break I am back at the laptop for CFMUDDA with new topics that I find very exciting for my health, I hope will interest you too!  

First of all I would like to thank any of you who have supported the Australian #YesToKalydeco campaign, it has been (and is) a long winded and exhausting process and sadly still not complete, the G551D CF patients of Australia are still awaiting funding approval from The Australian Government... we hope that during the last PBAC meeting a couple of weeks ago a price agreement was struck, but we will not know the fate of kalydeco in Australia until late next month. It is an terribly anxious wait for so many. Please continue your support by signing and sharing the official campaign change.org petition by following this link: https://www.change.org/en-AU/petitions/make-kalydeco-available-to-australians-with-cystic-fibrosis

Thank you!

So onto the other 'happenings'; well last week a very special parcel arrived for me from Tbilisi... 

can you guess what it is??...

Bacteriophage's!!!!


3 month supply of my 'bespoke' phages!!

I can't tell you how good it felt to hold these little guys in my hands... I feel I have been waiting since I was 12 years old for this moment! Although I only discovered phages existed more recently, I have been seeking something to effectively 'wipe out' the bugs eating away at my lungs.. October 12, 2012 to be exact, a lovely lady who has now become my friend, posted an article in a CF related Facebook group, this is the article: http://www.scientificamerican.com/article/are-phage-viruses-forgotten-cure-for-superbugs/
I read it and it was like music to my ears!!! 'A 'friendly' virus that eats bacteria' WOW! what a concept! Instant mind blow!! I mean, my whole life viruses have been the enemy, heaven forbid if I caught one, now I have done a 360 and am nebulizing them?! hahaha! Well, make no mistake, only the very special friendly ones!! 

My brain instantly went into overdrive: 'Who? What? Why? Where,? When? and HOW??'


an excellent animation of how phages work



Yes, since that fateful day in October 2012 I have been on. the. hunt. for my phages! See, phages are very picky 'eaters' they only 'eat' one type of bacteria, one strain per-phage. So the Phage Therapy Centre had to go find my particular strain of Pseudomonas Aeruginosa's perfect phage match (otherwise the therapy won't work). Another example, if you culture multiple bacterias, say MRSA, Pseudomonas, Cepacia, you'd require a phage for every strain of bacteria the labs can isolate, then they'd create for you what they call a 'phage cocktail' (no, not the yummy kind of cocktail!).

Onto my pseudo, after years of antibiotic treatments it has become a very resistant and stubborn strain. According to the labs,"behaves quite differently under the microscope to regular pseudomonas.a". That was actually a relief to hear that! No wonder it's been so difficult to eradicate!! Basically is a 'super pseudo'.  

December last year my sputum sample was sent to Tbilisi, Georgia, to be isolated and tested against phages, the clinic came back with disappointing news, no commercial phages 'matched' my pseudomonas. I freaked out for a second, but was quickly assured that this was not the end of the line for me. All it meant was they would need to hunt for a phage match, which could take month and months. I was very nervous they would not be able to find me a match, but 6 weeks later I received very welcomed news: 'we have found a bacteriophage to match your pseudomonas'.


Hip Hip Hooray!!!!!!!!

Fast forward to preparations for phage therapy: So to optimise the therapy and to clean up my lungs ready for cold and flu season, I elected to do a course of IV antibiotics (abx). As some of you may remember, I am severely allergic to all IV abx, so require desensitisation  every time I commence IV treatment. This is a very painstakingly slow process, dot dose's over 4-6 hours whilst my body adjusts (there is a more technical scientific explanation I won't go into now..). I underwent desensitisation 2 weeks ago, all went very well, but unfortunately on day 7 of abx treatment, my allergies broke through (welts on my torso) so the ceftazidime was stopped. I am due for review on Wednesday and we shall work out if I require further abx treatment (another desensitisation) or if I feel confident to not need further treatment. 
Phage therapy is complemented by antibiotics... or should I say antibiotic treatment is complemented by phages? Either way, they are a good team to fight the pseudomonas at every angle! So we have to weigh up whether or not it's worth continuing abx for this reason. We shall see... 

A question I have been asked quite a bit since sharing my bacteriophage journey with my facebook friends is 'Does your CF doctor support your phage endeavours?'. Fair question, I discussed the possibility of having my phage therapy administered in my hospital, my doctor was not personally opposed, however due to the fact phage therapy is not TGA ('TGA' is the Australian 'FDA' US equivalent) approved, the hospital 'red tape' would be endless, rendering it impossible to have the phage therapy administered by my hospital at this stage. I am excited to say though that there are phage therapy trials due to commence (or are being conducted now?) in Australia. One of my great hopes is that one day it will be a standardised therapy offered in all CF clinics, given the superbug epidemics and drug resistance in the CF community, bacteriophage therapy is a very safe and efficient treatment, offers the CF population a lot of hope I think.

22 March 2014: My very first bacteriophage therapy!!!! 

Of course safety first: I had my 'survival kit' at the ready if I experienced any anaphylaxis (aka: severe allergic reaction


My stats were all good (my 'normal')....


First 'test' dose: 3ml....


3 puffs of ventolin prior to treatment  ~puff puff puff~ and then 3ml of phages into my nebulizer...






video

My first dose video... little bit boring, but that's a good thing in this instance; No 'survival kit' required!!

As I am writing this blog I am nebulizing my third full dose of 10ml. Happy to report no seriously adverse effects thus far. Hours after first dose, my lungs started to wheeze a little bit in my right mid-lobe and my stats elevated slightly. During the night after two half doses of phages (5ml each) the friendly viruses 'did their thing'. I woke up with a decent lot of lung inflammation (as expected). No coughing or temperature/fever. Rapid & difficult breathing though. I took 30,000iu vit D3 (to reduce inflammation), 1200mg NAC & 3 puffs of symbicort inhaler, felt MUCH better within minutes. Breathing easy.. Within an hour or so later the action really happened!! I coughed up plugs from where all the wheezing was last night (mid-right lobe)!!!! 

EEEK!!! I was thrilled!!! It's starting to work... 

My hopes are high. I am on kalydeco which gives me the best chance possible to eradicate the pseudomonas. 
I'll be honest, without kalydeco and the fact I am an advanced CF patient, I would not be 

so hopeful for complete eradication (although even for people not on kalydeco, successful control of CF bugs is high), but kalydeco has essentially switched off my CF, my mucus production is down by 95%, my CT scan showed vast improvement since starting kalydeco...all that remains are these wretched pseudo suckers! It's never been tried before but I am going to give it my all to make this work!! 

I will keep you posted on my progress.... 

Thank for reading and I hope you are all keeping well! 



Further Reading: Studies and article links about Bacteriophage's 


"Pulmonary Bacteriophage Therapy on Pseudomonas aeruginosa Cystic Fibrosis Strains: First Steps Towards Treatment and Prevention" 

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0016963


"Phage Treatment of Human infection" 

"Bacteriophage Therapy" 

nature.com: "Old dogma, new tricks—21st Century phage therapy" 

http://www.nature.com/nbt/journal/v22/n1/full/nbt0104-31.html


"Bacteriophages Can Treat and Prevent  pseudomonas aeruginosa Lung Infections"


Aug 8th 2013: "AmpliPhi Presents Data on Bacteriophages in the Treatment of Lung Infections in Cystic Fibrosis"

"Bacteriophages of Pseudomonas aeruginosa: long-term prospects for use in phage therapy."


"Phages may be key in bacteria battle"


"Imperial College of London: Phage Therapy"

"Ampliphi presents encouraging pre-clinical data on the use of phage-based therapies to treat bacterial lung infections"


"Pseudomonas Biofilms, Cystic Fibrosis, and Phage: a Silver Lining?"

"Phage  Applications"

Enterococci ,Escherichia Coli , Proteus , Pseudomonas , Salmonella , Shigella, Staphylococcus, Streptococci    

"Merger to Focus on Phage Therapy to Fight Infections"


The Promise of Bacteriophage Therapy for Burkholderia cepacia 

The Promise of Bacteriophage Therapy for Burkholderia cepacia 

The Promise of Bacteriophage Therapy for Burkholderia cepacia 

"The Promise of Bacteriophage Therapy for Burkholderia Cepacia Complex Respiratory Infections"  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3417384/

"Toward modern inhalational bacteriophage therapy: nebulization of bacteriophages of Burkholderia cepacia complex"


"Experimental Bacteriophage Therapy Increases Survival of Galleria mellonella Larvae Infected with Clinically Relevant Strains of the Burkholderia cepacia Complex"





"The Forgotten Cure: The Past and Future of Phage Therapy"






The Promise of Bacteriophage Therapy for Burkholderia cepacia 



**Disclaimer: The content in these blog entries are the personal views, opinion and personal health journey of the blogger, not counsel or advice. The words and other con­tent pro­vided in this blog, are not intended and should not be con­strued as med­ical advice. If the reader or any other per­son has a personal med­ical con­cern, he or she should con­sult with their appropriately-licensed physi­cian or other health care worker. Thank you.