I NEED help. Ready to go ahead with Phage Therapy, but gotta raise the rest to start treatment

[Matt]

I don't really like doing this but I'm actually a little bit desperate to end this infection finally, as it's been a nightmare and ruining my health for the past 6 months almost. It's probably the worst thing I've gone through.

I need to raise the rest of the money for to begin phage therapy treatment. This won't cover all over it as I've used quite a bit of the funds with tests, appointments, a few supplements, and so on But raising the rest here will cover most of what I need. And then I can pay the rest when I get paid at the end of the month from my job.

If you can spare anything to help me out here, I would appreciated it. When I am better, I will give back, in some way. 

You can see my GoFundMe here https://www.gofundme.com/f/donate-to-help-me-beat-this-infection

I've done a couple updates, as well as updates and reports on my blog. I've also got a thread here on CRSociety forums

 

 

 

 

 

Thanks for your support all. 

 

[Gordo]

Hang in there, and thanks for spreading awareness of the phage treatment option, very interesting, hope it works. When you get better maybe you can produce some more content about and/or interviews with the phage people. Seems like a very useful technology.  

Are there other antibiotics proven effective against this bacteria that perhaps your body could tolerate that you haven't already tried?

[Matt]

Thank you for the the help Gordo, and Dean, I really appreciate it. 

I had a message from Lana yesterday. She said what we can do is pay for the standard treatment package 1900 Euros and then I'll have the standard phages sent to me and have the rest of the stuff mentioned in the package. And then once I get enough money for the custom phages, I'll pay for that and then they'll start creating them. The chances of standard phages working here are quite low, however. The closest phage would be ones that target Klebsiella.

Custom phage can take 8-12 weeks to create. So still a lot of waiting time. Hence why I want to get this process started asap.

I'll upload some photos and video of the phages when I get them.

As for antibiotiocs, many of the ones on the antibiogram are 'last resort' antibiotics that are used in hospitals and many of them are high toxic in one way or another. Not ideal at all really. 

Amoxiclav: I have it here, but I need to speak to infectious disease specialist shortly. My doctor has written to him at the hospital. The best approach is to combine phages with antibiotics so prevent resistant bacteria from emerging.

Edited March 16, 2023 by Matt

[Ron Put]

Matt, I and I am sure everyone here, is rooting that this resolves without complications.

But isn't phage therapy usually a one or two shot method of treating infections? With some potential unknowns?

I just read a bit on Raoultella planticola and it seems that your condition is likely to be treatable with combos like amoxicillin with clavulanic acid:

https://www.sciencedirect.com/science/article/pii/S1876034117300989

[Matt]

6 hours ago, Ron Put said:

Matt, I and I am sure everyone here, is rooting that this resolves without complications.

But isn't phage therapy usually a one or two shot method of treating infections? With some potential unknowns?

I just read a bit on Raoultella planticola and it seems that your condition is likely to be treatable with combos like amoxicillin with clavulanic acid:

https://www.sciencedirect.com/science/article/pii/S1876034117300989

Amoxicillin poorly penetrates the prostate, this is the big problem. 😞

I had prostatitis from 2005-2012, it took me 7 years to cure it with months and months of antibiotics. In the end I cured it with Doxycycline, and was completely symptom free for 10 years. I tried Doxycycline a few times in the past few months and every time I had extreme neuropathic pain all over my body. Same for Trimethoprim. I think I may have figured out the mechanism behind Trimethoprim, but I really don't know. 

It was a lot easier to deal with before because I was able to treat with those two antibiotics and never had side effects. Which is so frustrating because I have not been able to use them this time due to neuropathic pain.

Phages have been used successfully many times to cure prostatitis (I shared these in my other thread and on my blog), and it is more effective when combined with antibiotics - which helps prevent the development of resistance. I've also spoken with a few people who had their infection cured with phages. The NHS here is looking at scaling up the use of them, but it's very slow.

The infection I have is also R. Terrigena, not R. Planticola. Eliava used the VITEK system which misidentifies the bacteria often. Two of my tests were R. Terrigena using more up to date or better systems in London.

 

https://pubmed.ncbi.nlm.nih.gov/27735805/

"Although Vitek 2® automated system identified the isolates as R. planticola, 16S rRNA sequencing and blast analysis of the bacterium had figured out that the bacterium was R. terrigena with 92% identicality."

In a case report, Demiray et al. described a clinical isolate, which initially was identified as R. planticola by Vitek 2. However, 16S rRNA encoding gene analysis resulted in the identification as R. terrigena

Also, this is why it's so worrying to me. Yes I am otherwise healthy, but there's very little information about the general clinical course of this type of infection

"Raoultella terrigena (Klebsiella terrigena) is a rarely found opportunistic pathogen. There were reported 363 cases of R. terrigena infection between 1988 and 2021 year. The mortality of this infection about 44%, and in 38.6% of cases, R. terrigena, has MDR antibiotic sensitivity profile. We made a brief literature and clinical case review."

Edited March 17, 2023 by Matt

[Matt]

 Going to order this standard phage treatment this week. And then hopefully order the custom phage cocktail to be created once I get the funds. 

I will definitely be writing about my experience here, it could help a lot of people. Not a lot of people in the UK or US even know about phages and they are a treatment option which can and does work for people who use it. There have been many who have cured prostatitis using them, so I'm hopeful here. It's good that I was able to isolate the bacteria, otherwise this wouldn't be possible.

There's a good 3 part episode on Bacteriophages here, very interesting...