Matt

Thanks everyone! 🙂 Some initial results I got back from a second culture since finishing the phage treatment (this time testing in a lab in the UK). Again, very little bacteria found. They say very scanty growth of less than <10,000 cfu/ml and doubtful significance. I guess the final report will tell me the name of the bacteria? What was seen this time was white blood cells, indicating some inflammation still. Maybe after having the infection so long, the inflammation is persisting. It's plausible that this is what's causing some minor symptoms for me. Or maybe the bacteria is just deep in the prostate and not showing up. I've no idea... Either way, I think I will go ahead sometime before April and just to do another round of the custom phage and see what happens. It can't really hurt anything as they are so specific, unlike antibiotics. The symptoms do still feel different now. Although I am still needing to take ibuprofen at times, I'm not feeling sick/ill anymore as I was prior to phages. Which might indicate it's just inflammation I'm dealing with. Or the bacterial load is just too low to feel systemic symptoms. Good thing that my nerves are almost completely better now after taking B12 for over a year as well, so I might be able to take Doxycycline at some point if needed (I don't react badly to any of the supplements or Trimethoprim anymore, so I should be fine I guess?). But I'm going to avoid using it right now because I know nerves can just take a very long time to heal completely and become physiologically normal (not hyperexcitable / irritated). Last thing I want to do is have a setback when it's not necessary and my symptoms are so minimal. My bladder has minor symptoms. It could again be inflammation left over from having an infection for so long or a low level infection still on going. Anyway, I told myself that it would take about 2 years go resolve these problems. That would take me up until September. I think I'll get there. 🙂 I've made huge progress so far!

The main bacteria, Raoultella, seems to have been eliminated since taking the custom phages!!! 🙂 I am a lot better, thank you. I have some minor symptoms left, like irritaion of the bladder if I drink cranberry juice or something irritating. Slight urethritis but it is getting better. Ideally, I would have urethra installations of phage, but that was not a possibility in the UK with remote treatment. Other than those symptoms, I am fine! I don't feel sick anymore and I am working full time again. I'm likely going to do another round of custom phages, just in case the bacteria is not showing up but is deep in the prostate on within biofilms in the bladder. It's possible, since in my previous experience many years ago, this condition can pop back up again months later after I had treated with antibiotics. It'll cost 900 euros. I thought it was cheaper, but for 20 boxes of custom phage, that's what it is. Not too bad, and a lot more affordable than paying for the whole package as I had to do before. As long as I order it before April, I am able to just pay for the phages. 🙂 Over the next 2-3 months, I am going to test locally, and see if the bacteria shows up again. The staph bacteria that showed up is insignificant and we agree it's almost certainly contamination. The raoultella is the main bacteria that kep showing up in multiple tests before. But so far it's looking good! Thanks again for the help 😃

Thanks both! This is the BEST I've felt in a year. I feel so much better right now. It's worked so well so far, I honestly can't believe how quickly I am getting better day by day. I'm not even through the 1st cycle out of 3 yet. Because of the immune system response, I have to take breaks of 2 weeks every 15 days. Once I get through the first course, I'll repeat the samples. If needed, I can just repeat order the raoultella phage and it will be done much more quickly as they already have it. Plus it will only cost 300 or 400 euros or something (can't remember), so not too bad. Sometimes these infections can be cured in one course, sometimes it takes two. We'll see... But yeah, hopefully all this will be behind me shortly!

It's coming now to the end of the 10th day on these custom phages and it seems to be working!!! 😊 Two days after starting the custom phages, I started getting a low grade fever, prostate felt inflamed, and had more bladder and back pains. This lasted 3 days and then I started getting better. At day 10, I feel quite good! The back/kidney pains have gone now and my bladder feels so much better! The prostate inflammation has also settled very quickly. My body temperature has also returned to normal with a waking temperature of 35.0 degrees C. I'm currently taking 100 mg of Trimethoprim at night only (suppressive dose). As low dose trimethoprim can be synergsitic with phages against klebsiella, which this bacteria is almost identical to. When I took the standard phage, which had nothing that targeted my bacteria, I didn't get such a reaction. However, after reading some case studies again, it seems that an increase in symptoms initially is pretty common. It's thought the phages could be disrupting the biofilms and also the effect of the immune syste after being able to see the bacteria and also the lysed / dead bacteria. I'll have an update again at week 4 for anyone interested. But I am feeling optimistic about this! 🙂

Yeah, it's been really up and down but I am noticing more better days lately, especially being on the antibiotic. I still get these flares but nowhere near as bad. I just received my Raoultella phages today! It says Raoultella planticolla on them but that's just because their VITEK2 system identified it as that. The genus is frequently misidentified betwee R Terrigena and R Planticola, but it's irrelevant anyway. After the first round of phages I'll get another test done to see if the bacteria is still there. And if it is, is the bacteria susceptible to my phage. Then we'll go from there. If I have to pay for another round of treatments, that's fine. It'll be creating a new custom phage but using the phage they already have and evolving it I think. At least that's my understanding of it. So the time frame would be much shorter than before in creating another one. But I will be continuing antibiotics with the phages. And this is best anyway, because of the antibiotic and phage synergy. Thanks for the help and for caring Dean! I appreciate it.

I rarely ever got sick with anything, I went 6 years without being ill with a viral infection. The only issue I had was a dental abscess due to lockdown and not being able to get a RCT done again on it. SOME UPDATES FOR THOSE INTERESTED! 🙂 A few weeks ago I started getting a flare up, including kidney pains and feeling quite unwell again. I didn't have much choice this time but to take an antibiotic. And I got a positive leukocyte test. My urine pH often goes to 8.5 as well, if I don't try to reduce it with something. Both indicating infection has gone to my bladder. In addition to all of the supplements I've been taking, I added R-Alpha Lipoic Acid. I then started taking Trimethoprim again. The same antibiotic that was causing severe neuropathic pain, numbness, and limbs falling asleep constantly back a year ago. It was very hard to tolerate it even 2-3 days. It appears that R-ALA has almost completely prevented the neuropathic pain with antibiotics! So I finally figured it out, it seems (I hope). Trimethoprim was working great at the start at 100 mg, twice a day. Then after 4-5 days I was going backwards and worsening again. I upped the dosage to 200 mg, twice a day, and started to improve a lot again, it cleared up the urethritis quite quickly. Now almost 3 weeks on Trimethoprim and it feels like it is losing effectiveness. So I'm going to continue another week or two and see what happens. Having dealt with a chronic infection before, sometimes flare ups are normal during treatment. Damped oscillation of symptoms is exactly what I experienced in my previous bout of a chronic UTI. On my lab reports, it does say that the bacteria is resistant to Tetracycline. But does that mean it is also resistant to Doxycycline? Can a bacteria be resistant to tetracycline and not doxy? I can't get a clear answer anywhere. I wasn't able to tolerate it before, but maybe I can now. The R ALA has also prevented my reactions to some of the supplements too. And the other big news: MY CUSTOM PHAGE IS READY! They just sent off my phages to me today, so it should be here in a few days. I'll probably be taking it for a few months. I'm excited and nervous about it. Of course, I repeated the tests over and over again to make sure as much as could that I got the same bacteria and it wasn't contamination. But there is always that chance it's not the right bacteria. I think it's likely it is though, given the circumstances and how this happened. Since the bacteria is intrinsically resistant to amoxicillin, and it happened right after. It selected for growth of this bacteria. It makes sense. Coupled with the 4 tests that showed Raoultella. I will continue to take Trimethoprim, even though it doesn't feel as if it's working as well. Phages + antibiotics are very often synergistic. With phages able to reverse antibiotic resistance as well. I did get benefit from Doxycycline when I took it for like 3 days, so I may switch to that and take with phages. I need to speak to my doctors on what's the best thing to do. It's been a while, so I thought I'd give an update. Again, thank you to to those who helped me get this treatment!

Thanks Dean. Unfortunately, lactoferrin and cranberry supplements stopped working recently. 😞 It seems the bacteria adapted. I tried another medication called Hiprex, which also eliminated my bladder symptoms, and I had the exact same reaction to it as I do with antibiotics. But this time I kept taking it until day 5 and by that time I could barely walk. My legs got very weak and like jelly. I had to stop taking it. It's been 18 weeks now since I ordered the custom phages. Still waiting.... It's done when it's done basically. They have to evolve the virus to kill the bacteria an it takes time to purifiy and prepare it too. Apparently it's a difficult bacteria to work with. Recently I just ordered another supplement called Juniper and that seems to be working. But I'm once again getting the same nerve pain back after 1 day taking it. It comes on within 30 minutes of taking the supplement. The three supplements that are causing me issues are: Juniper Uva Ursi Horsetail They all come from the same company NaturAlma and they all contains 3 ingredients: Vegetable Glycerine (glycerol), Water, and the main herb / plant extract. I am wondering, if it's the alcohol sugar glycerol that is causing these reactions. I have no issues with any other supplement I've taken in powder form. It's just these liquid extracts from the same company. I know glycerol is toxic to nerves especially at high concentrations. I wonder if because I have such hyperexcitable / hypersensitive nerves, the glycerol, when absorbed, is irritating my nerves directly or causing some kind of allergic response. Here's an update: https://www.crvitality.com/2023/07/fighting-raoultella-uti-and-reactions-to-antibiotics-and-supplements/

Just a brief update! I have 20 days left of my standard phage therapy. It's been around 12 weeks since I ordered the custom phage, so I should be receiving it any day now hopefully. I was able to cure my bladder infection or at least eliminate the symptoms of it from a combination of supplements. Cysticlean - twice a day (240 mg PACs per capsule) Jarrow Beta Glucan - 4 capsules a day Life Extension Lactoferrin - 4 capsules a day (really expensive but it's working very well!) Oil of Oregano - Not sure this is doing anything but taking it anyway. 6 drops a day My systemic symptoms have been gone for weeks and my energy levels are improving all the time. During healing, I've noticed a dampening oscilliation of symptoms. Improvement, followed by flare, followed by improvement. Each flare being less severe and lasting fewer day than the previous. Apparently this is common, according to doctors who treat chronic UTI's, It seems the combination of supplements has given my body the edge over the bacteria for now! After I started taking the supplements, I found some research that showed Cysticlean (standardized cranberry supplement) had very good results in humans with UTI's. I found some studies with very positive results for lactoferrin, too. Histamine and intolerance to antibiotics I also discovered that a lot of my tingling and burning symptoms are related to histamine. I've been taking loratadine daily and that has almost eliminated the remaining burning sensations I had. I believe because my nerves are hypersensitive and irritable, the antibiotics might be causing an immune system reaction and this is affecting my already injured/irritated nerves. I just started taking uva ursi again by slowly ramping up the dose, and it's been better, but the burning is back at full dose. I even noticed it at doses like 1/20 of the full dose. However, it's about 50% less severe than what it had been without the antihistamine last time I tried it. It's still a bit annoying and painful, but more a lot more manageable. I was hoping it would completely block this reaction, but even with hay fever, it doesn't do that so perhaps I was expecting too much. Perhaps something more powerful is needed? If my nerves hadn't been damage, I'd probably hvae no issues with any of these antibiotics or urva ursi. It's unfortunate, but I've experienced something years ago after I took cipro. It also damaged my nerves, and I reacted in the same way to certain things, one of them was methyl paraben. After a few years, this paraben didn't cause the flushing, burning, tingling anymore. Without the uva ursi, I had no burning at all. So my nerves are getting better, clearly. It just takes a long time (months to years; probably years). I feel a lot better these days. Not perfect, but I've at least been able to find a combination of supplements that is controlling the infection. I might try adding Hiprex for an antibacterial.

Yeah, I don't think I've ever seen a product with as much as this before... https://www.amazon.co.uk/dp/B00GY231EU? That's what I'm using. So, now that this has actually worked to remove the systemic symptoms (I still feel fine today, with very low body temperature), maybe the infection is mostly in the urethra and bladder. Perhaps the source of the infection was the prostate, but a lot of the prostate symptoms have gotten better over the months. My bladder is still a bit irritated, but clearly there is progress. I haven't had any painkillers today. The idea behind using cranberry was to prevent adherence of bacteria to the bladder and urethra. And of course the bladder sheds as part of its response to infection (thus releasing free floating bacteria from biofilms or in cells), and then the beta glucan acting as an immune system modulator to develop a faster and more effective response by the immune system to any new bacteria trying to adhere to the walls. Makes sense, logically... But it could take quite a while. As for the nerve pain, the antihistamine has worked extremely well 😃

The supplement combination seems to have worked I'm taking Cranberry extract morning and night (total of 480 mg PACs), 4 beta glucan (Jarrow) a day, and Oil of Oregano. My systemic symptoms have been gone today. My energy is much better and my body temperature is much lower. I've only taken 1 ibuprofen and that was early this morning. In addition to that, I took the H1 antagonist, Claritin, and that has significantly lessened the burning sensations and tingling!! Hopefully, I can manage the symptoms like this for the next few weeks and use the phages to get at the colonization of the bacteria. Usually at this time of the evening, my body temperature is much higher. But it's quite low right now and I feel much more normal. 🙂

Thanks both. Discovered a couple things which probably explains why I'm getting nerve pain (severe burning) when treating the infection. 1. Raoultella is a histamine producing bacteria and when treated (case studies) the doctors use a antihistamine due to significant complications due to this feature of the bacteria. Perhaps when the bacteria is stressed by the antibiotic, it produces greater amounts of histamine? Just a thought... 2. In one study, it's shown that irritated or sensitized nerves in the skin (neuropathic skin) respond to histamine not presenting with an itch, but it's converted to burning sensations or pain. A quote from the abstract: "Conversely, histamine application in neuropathic skin induced severe increase in spontaneous burning pain but no itch." Now, since I most likely have irritated nerves (C-nerve fibers) and neuropathic skin, it makes sense that I am reacting this way. It could be a combination of the bacteria and the antibitoics. 3. It's possible that histamine levels could be increasing when I take the antibiotics, and I might be sensitized to them. I remember when I used to take Trimethoprim, I'd get an itch for a few days when starting (it's common) but then it would go away as I carried on. A couple potential ways to resolve this: - Take a antihistamine to see if there is a reduction in nerve pain without antibiotics and then with antibiotics. I'm going to try Claritin by itself tomorrow to see if this actually helps with the nerve pain. Since I have the bacterial infection producing histamine, this might actually produce a good signal as to what's going on if it works. - Desensitization to antibiotics by starting on a very low dose and building up to full dose over time. I could actually try this with the bearberry supplement as a test as well, since the full dose was 40 drops a day, I could start very low and build up to see if I can build up my tolerance. This to me seem logical. Maybe I've figured it out or pretty close?

Only another 2- 6 weeks possibly until I get my custom phage!! So anyway, a bit of an update. 😕 Lately, it seems that the infection has spread to my bladder, which was probably inevitable I guess... Since it hasn't really been treated properly. I decided to try and look for some natural supplements to help. I came across Uva-Ursi (bearberry) as many people say its effective for bladder infections. It contains arbutin which gets converted to hydroquinone. So anyway, I try it and the first two days I was okay. By the 3rd day, I started getting intense burning of hands and feet which eventually was everywhere. Like my skin is on fire all over. The supplement itself worked extremely well on the bladder. All the burning, painful bladder, and frequency went to normal. Even my body temperature dropped back and my chronic fatigue was hugely improved. So... on the day I received the supplement, I had also stopped taking the codeine. It was often only 1 x 30 mg codeine a day, and very infrequently I'd take a paracetamol with 8 mg codeine in the day. But this went on for 7 months and I suddenly stopped the other day... Now i have no idea if these symptoms are because I had stopped codeine or because of the supplement? 😕 I know that codeine can cause withdrawal effects and cause nerves to rebound and become hyperexcitable. But would I really be having these effects from coming off a low dose like that? This is so annoying 😞 I can't seem to win no matter what I do. I will now try oil of oregano, yeast-derived beta glucan, and cranberry with high % of PACs. Isn't it so weird I keep getting the same side effects? Is this a pseudo-exacerbation of symptoms or a genuine worsening of the neuropathy (probably small fiber?) Any thoughts?

Phages arrived! 🙂

I should receive standard phages (Pyo bacteriophages and Intesti bacteriopages) on Monday! Fed Ex says Monday, so hopefully it's on time. I'm cautiously optimistic it will help, although no phage specifically targets R. Terrigena (the main pathogen which I still need the custom phage for), it does have Klebsiella phages, which are almost genetically identical. No guarantee it'll work as often phage therapy needs to be strain specific but there can be some cross-reactivity. The phages I will have will do a couple things a) help wipe out pathogenetic strains of bacteria that may be contributing to the problem but not showing up in tests (possible) b) wipe out pathogenic bacteria that are there waiting to take its place once the R Terrigena is wiped out. The interesting thing about these commercial phages is that they are updated every 6-12 months. This is one case study, where he cured his untreatable infection due to resistant bacteria, with phages. Thank you again, Dean and Gordo, who donated and helped me get this treatment. I appreciate it so much. Eliava Phage Therapy Center is who I am doing the treatment with. Interesting video here 🙂

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...