Bacterial Prostatitis and I'm unable to treat it

[pwonline]

12 hours ago, Dean Pomerleau said:

The RDAs were set at a time when virtually nobody in the US was getting all (or most of) of their nutrients from strictly plant-based foods.

So for example, this page on the Vegetarian Resource Group website clearly indicates that the RDAs may not be sufficient for vegetarians, and especially vegans:

Recommendations for iron for vegetarians (including vegans) may be as much as 1.8 times higher than for non-vegetarians[1].

-Dean

 

thanks for the article.
still it doesn't explain your situation Dean,

in 2015 you was consuming 4.3x the RDA for iron with 7.6x Vitamin C and only 1.2x calcium, all factors indicating you should have plenty store of iron yet you don't and consume an extra 1.1x of iron RDA a day (65g iron over 7 days) which implies your absorbing barely any iron from your diet ?

Source:

 

[pwonline]

12 hours ago, IgorF said:

yes, RDAs can not cover all the nuances of absorbtion and malabsorption, they cover 2 or 3 sigmas (don't remember) in the statistics model, thus they should be read as - the amount of nutrient when it is absorbed is enough for 99.8% of people to avoid serious consequences or something close to this statement

but every individual element has its own nuances and there are plethora of them, of different kinds, some examples are

- very small rda for b12 is working when it comes from food but with supplements the dozes in orders of magnitude are required

- fe3+ from animal sources is absorbed 50%+ in average" while fe2+ from is perhaps 20% or something like this

- excess zn can cause issues with copper and there are other similar pairs

- non-soluble salts of 2+ iones and organic/carboxy acids (and the place where they are met)

- selen in one selenoacid is regulated while in other is not

- brcaa aminoacids can be used for proteins building but also destroyed for energy

- proteins in RDA quantities will not support muscle mass gaining

and the list can be continued with many more such things.

so RDAs (when they exists!) sometimes could be taken as is and sometimes multiplied, there is no general rule how to deal with them, they just describe the amount of nutrient to be sucessfully absorbed when target is severe issue avoidance.

Another aspect - optimality, RDAs are not about this but in some subtle way they could cause an issue because people will believe they are good because they are reaching the RDA while in reality they will cause unoptimal functioning of something that under some circumstances will make things fishy.

That is what I suspected with Matt's case and why I recommended to ensure that energy, protein and energy-related bvits are in a good shape, after the reading of the longer story I am even more convinced that the issue Matt has/had is slightly  decreased immune function, caused by depletion of some important molecules (of those we know and we don't like enzymes and their activities - the things that produces weaponry to control commensals and/or fight intruders).

So my answer in general - yes, with many things just hitting the RDA "on paper" is not enough, supplementation is required, unless a person is not limiting herself to less than 2000kcal dayly and the same foods for months. But I am not a nutritional expert or medical worker, I just trying to arrange all I faced on my own, read in books, learned from others etc.

 

Br,

Igor

thanks for detailed response, yes nutrition is so complex 🙂

[Matt]

It looks like I may have found the bacteria that is causing the infection.

Raoultella terrigena

It can be serious... In hospital-acquired infections, mortality is 40-70%, but these people have multiple comorbidities. It is also tends to be MDR. It is naturally resistant to beta lactam antibiotics like Amoxicillin.

How did I get it? Probably as I already hypothesized... I took amoxicillin for the dental infection, it wiped out my good bacteria, and then adding the vaccine the very next day after finishing amox allowed for the bacteria to take hold.

I gotta send off another sample now to Georgia for phage testing. Hopefully it shows up this time.

😢

 

[IgorF]

Maybe some of these marked as green antibiotics could be used to do heavy lifting for already overgrew bacteria

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8123537/

their names sounds exotic for me, (except Nitroxoline which I think I had prescribed many decades ago for something), no idea about availability

Br,

Igor

Edited February 1, 2023 by IgorF

[Matt]

Thank you...

I am thinking about Augmentin and Phages together. I may need to speak with an infectious disease specialist.

See my update here: https://gofund.me/a82e6b73

[Matt]

Some bad news and some good news: There are no commercial bacteriophages against the bacteria, so the only way forward is to find one that works against it. This can take over 6 months. The good news is that the bacteria is sensitive to 15 out of 16 antibiotics they tested, so I am in no immediate danger here. I've got a lot of options if there bacteria were to spread (not all antibiotics are suitable here as the don't penetrate very well into the tissue).

This is now the THIRD time (in a row) Raoultella species has been identified. In the first two lab results from London TDLPathology, it was R. Terrigena 10,000 - 100,000 cfu /ml In this newest report, the system identified the bacteria as R. Planticola. However, older automated systems misidentify the pathogen.

See: "See: 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" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8365188/"

So now I have even more clarity on what I'm dealing with (they even did an extended culture for me to see if anything else showed up, but there was nothing else). I've got a more extensive list of antibiotics now that can be used.

Now where do I go from here? I'm going to talk to a microbiologist and go the antibiotic route in the short term it seems.

[Gordo]

21 hours ago, Matt said:

Raoultella species has been identified. In the first two lab results from London TDLPathology, it was R. Terrigena

At least you know what you are dealing with but it sounds nasty:

https://pubmed.ncbi.nlm.nih.gov/34026135/

Raoultella terrigena: Current state of knowledge, after two recently identified clinical cases in Eastern Europe

"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."

[Matt]

Yeah it can be bad, but at least I am otherwise healthy, so perhaps that statistic doesn't apply to me.

I'm going ahead with custom phage therapy. It needs to be created, but given how serious this bacteria can be, it's probably a good idea to use it in addition to the antibiotics.

If anyone wants to help fund the treatment, please donate just a little if you can.

I'll receive standard phages I believe, in addition to the custom phage within 8-12 weeks. I'll obviously show everyone the phages and the treatment process.

https://www.gofundme.com/f/donate-to-help-me-beat-this-infection

Thanks all for your advice / help. Hopefully this will all be over soon.

[Matt]

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 🙂

 

 

 

Edited April 1, 2023 by Matt

[Matt]

Phages arrived! 🙂

 

 

[Matt]

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?

Edited May 3, 2023 by Matt

[Dean Pomerleau]

No idea Matt, but wishing you the best. I really hope that the custom phages do the trick. 

--Dean 

[Sibiriak]

22 hours ago, Matt said:

it seems that the infection has spread to my bladder...

Sorry to hear about this.

As you likely already know, cranberry extract and d-mannose are moderately effective in preventing certain kinds of  bacteria from adhering to the urinary track walls, but won't directly knock out an infection like antibiotics.   They are probably most useful as prophylactics.

Edited May 4, 2023 by Sibiriak

[Matt]

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?

[Matt]

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. 🙂

[Sibiriak]

16 hours ago, Matt said:

total of 480 mg PACs

That's a lot!  I'm curious, what product are you using?

[Matt]

32 minutes ago, Sibiriak said:

That's a lot!  I'm curious, what product are you using?

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  😃 
 

[Matt]

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.

Edited June 17, 2023 by Matt

[Dean Pomerleau]

26 minutes ago, Matt said:

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

Matt, I'm very happy to hear you've found ways to manage your condition and are gradually getting better. Your research and determination seem to be paying off! 

--Dean 

[Matt]

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/

[5fp4]

Hi Matt,

just wondering if you're working on a very strong progressive mental well being. You wrote in your update:

"When I knew I had a UTI, I had a gut feeling that this wasn’t going to be resolved easily. I don’t know why I felt this way at the time, it was just something I felt."

That got me thinking - immun system has a strong connection to your mental system. 

No need to answer (if too personal) - just wanted to throw this thought in the ring.

 

Best 

CTPA

 

[Matt]

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!

[Dean Pomerleau]

Thanks for the update Matt. Sounds like you are still on a rollercoaster. The phages finally being ready is great news. Hopefully they'll do the trick!

 

[Matt]

On 8/31/2023 at 3:41 PM, Dean Pomerleau said:

Thanks for the update Matt. Sounds like you are still on a rollercoaster. The phages finally being ready is great news. Hopefully they'll do the trick!

 

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.

[Matt]

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! 🙂