19 replies to this topic

[Matt]

Hi all,

 

I hope it's okay to post this here but as a really old member, previous moderator, and contributor of this forum, I really need your support and help.

 

I've been suffering with what is a chronic bacterial infection for the past 6 months. My options are limited, given how hard these infections are to treat. And not only that, the type of bacteria that is infecting me is potentially serious and rare. It's called raoultella terrigena.

 

How serious?

 

Well, in some studies (although retrospective and in people with comorbidities) the mortality rate is 44%

 

"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."

https://www.ncbi.nlm...les/PMC8123537/

 

It tends to acquire resistance very easily. I have tried treating it with both Doxycycline and Trimethoprim, but each time I took the antibiotic, I would get intense nerve pains all over my body with burning and tingling. It is unbearable, and likely small fiber neuropathy. The bizarre thing is that I've taken these antibiotics lots of times years ago without issues. I believe, it's possible that the reaction from Trimethoprim is due to a B12 deficiency, which also causes a functional folate deficiency (now treating), but I don't know for sure.

 

You can see in my post here, where I share 3 lab reports showing the Raoultella as the infecting organism. 3 lab tests in a row, 2 different lab. One did show Planticola, however, the automated VITEK system often will misidentify this organism (it's a very difficult one).  See:

 

"The result was duplicated with a new urine sample. 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"

https://pubmed.ncbi....h.gov/27735805/

 

I've been living this nightmare now for 6 months almost and I want it to end.

 

The plan and how I need help

 

I have been to a urologist, I have had scans done. And I've been in contact with Eliava Phage Therapy Center for the past few months to identify this bacteria and use phages against it.

 

The bad news is that it requires the creation of custom phages. I was hoping this wasn't the case as it's costly. And I don't have all the funds to get the treatment due to being off work for months and messing up my financial position.

 

My plan is to combine phage therapy with amoxicillin and clavulanic acid, which I have 4 weeks supply of so far. I am holding off on the antibiotic until I can get the custom phage. 

I will do 'distance' treatment, which you can see here:
https://eptc.ge/treatments/

 

The cost of the custom phage creation is 1400 EUROS. That means, I need to raise the rest of the funds on my Fundraiser that I set up earlier this year.

 

I don't normally ask for help, but I really need it at this moment

 

Thank you to everyone who has helped me so far, I really appreciate it so much, and I hope that in the future I can return the favor.

 

I've been struggling with this now for what feels like so long that I have forgotten what it feels like to be healthy. Every day I am in great pain, I survive on pain killers, I feel like I have the flu constantly, and my quality of life is quite poor.

 

I've had to do everything myself to prove to my doctors that I had an infection. They were dismissive of my symptoms until very recently when I showed them all the lab work I had done.

 

Very few antibiotics penetrate the prostate as it is, and many of the ones that are on the antibiograms are 'last resort' type antibiotics and ones that I cannot take (Cipro for example). They are quite toxic and last resort, like piperacillin + tazobactam. 

 

Phage therapy has been used to cure this condition I have. It can work, especially when combined with antibiotics. I want to give it a shot, but I need help to raise the rest of the funds.  I share studies showing it works here:
https://www.crvitali...d-your-support/

 

Phage Therapy is only just being investigated here in the UK, the NHS is far away from using it routinely. So that's not an option for me currently. I had to go elsewhere, like Eliava, which is well known and a 100 year old institute.

 

If you can help at all, I would appreciate it so much. Eliava has the bacteria, it's all ready to go. They are ready to create the custom phages for me. Now I just need to get the funds. And hopefully, by the end of the summer, I can have my health back again.

 

Thanks for reading if you got this far. There is more information, results, and other things in my blog posts and Fundraiser that you can look at to get a bigger picture of what's going on.

 

Thank you...

 

Matt

 

MY FUNDRAISER:

 

https://gofund.me/41698e37

 

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Edited by Matt, 17 March 2023 - 03:49 PM.

[Mind]

Have you tried any "natural" antibiotic substances?

 

You never know what might work. A lot of naturopath doctors would try colloidal silver, oregano oil, coconut oil, and bee propolis. I could send you some for free.

 

Also, if you are taking antibiotics, be sure to take probiotics, or eat probiotic foods (fresh yogurt/raw sauerkraut) to help replenish your gut flora. If you degrade your gut flora too much that will have systemic effects elsewhere in the body.

[Matt]

Right now I'm taking Quercetin + Bromelain, Allicin Max, L-arginine, ALCAR, NAC, Cranberry juice, D Mannose (not effective but don't wanna get e coli on top!), Benfotiamine, B12, Folate, Taurine, cod liver oil. Some of these may be helping, but I'm not sure.

 

I'm not on antibiotics right now due to the severe side effects I had with Trimethoprim and Doxycycline. I have 4 weeks Augmenting (co amoxiclav) but this is to be combined with the phage therapy. It works out better this way and higher chances of success, less risk of resistance. https://www.ncbi.nlm...les/PMC9311689/

 

Co Amoxiclav isn't exactly the best antibiotic for chronic prostatitis, but it might work and will obviously remove bacteria from the rest of the urinary tract. 

 

I've never used any of those supplements before... I wouldn't mind giving them a try as well. Do you know much about Goldenseal? That is meant to be helpful. I heard Parsley can also help?

Thanks

[pamojja]

Most important and realy inexpensive first aid first: http://www.doctoryou.../titration.html

TABLE I - USUAL BOWEL TOLERANCE DOSES

GRAMS ASCORBIC ACID NUMBER OF DOSES
CONDITION PER 24 HOURS PER 24 HOURS
normal 4 - 15 4 - 6
mild cold 30 - 60 6 - 10
severe cold 60 - 100+ 8 - 15
influenza 100 - 150 8 - 20
ECHO, coxsackievirus 100 - 150 8 - 20
mononucleosis 150 - 200+ 12 - 25
viral pneumonia 100 - 200+ 12 - 25
hay fever, asthma 15 - 50 4 - 8
environmental and
food allergy 0.5 - 50 4 - 8
burn, injury, surgery 25 - 150+ 6 - 20
anxiety, exercise and
other mild stresses 15 - 25 4 - 6
cancer 15 - 100 4 - 15
ankylosing spondylitis 15 - 100 4 - 15
Reiter's syndrome 15 - 60 4 - 10
acute anterior uveitis 30 - 100 4 - 15
rheumatoid arthritis 15 - 100 4 - 15
bacterial infections 30 - 200+ 10 - 25
infectious hepatitis 30 - 100 6 - 15
candidiasis 15 - 200+ 6 - 25

bacterial infections 30 - 200+ gram ascorbic acid 10 - 25 daily doses

If not at all used to titrating to bowel-tolerance, start with smal doses and increase gradually. If loose stool occures decrease dose and take more frequently. Don't take pills or capsules - too many fillers or binders - but pure ascorbic acid powder.

Edited by pamojja, 17 March 2023 - 05:51 PM.

[Dorian Grey]

Please look into Fosfomycin/monurol.  It is very benign regarding toxicity, and there is very little resistance to this med.  

 

I got a prostate infection (haemophilus influenzae) a few years back, & was horrified to learn the only drugs commonly prescribed were sulfa and quinolones. Had taken doxy and had no luck.  

 

Did some research, & found fosfomycin was being used for resistant prostatitis in europe.  Had a heck of a time talking my uro into prescribing this, and even then, he wouldn't prescribe the dosage & duration utilized in the EU.  I had to get additional doses from Mexico.  

 

30 days on 3 grams fosfo every other day & I was cured.  It really does take a month of continual exposure to fully penetrate prostate tissues.  It appears it is effective for klebsiella.  

 

https://academic.oup.../5/1324/6535937

 

Take it in the EVENING, as urine throughput is lowest overnight, and you want high concentrations to penetrate the prostate.  If you take it during the day, urine throughput will wash the med right through your system too swiftly.  

 

There is no down side to trying this.  It will not create resistance to other big guns anti-B's.  Fosfo is so safe, it typically is used for UTI's in pregnancy.  

 

Godspeed, and Best of Luck

Edited by Dorian Grey, 24 March 2023 - 06:28 AM.

[Blueflash]

When you mentioned bacterial infection, first I thought black seed oil and/or methylene blue. When the prostate was mentioned, I thought garlic. And when you said urinary tract infection, I thought cranberry juice

[Blu]

Another powerful antibiotic is berberine.

[jeftritj]

Andrographolide is an excellent option. LEF Has such a product but it's mixed with 200mg of enhanced Curcumin which probably isn't a bad idea either since they work synergistically. It is found in a plant called green Chiretta and known to have many medicinal properties.

[LiveWellLiveLong]

Not sure if this would help you or not: https://onlinelibrar....1002/ccr3.4089

 

It lists some case studies showing that Amikacin, Gentamicin, Imipenem, Colistin, and Netilmicin might be helpful.

[Thirdcatgy]

It might sound radical, but if possible I would consider temporarily moving to a location between the Tropic of Cancer and Capricorn for tropical light and grounding.  It's by far the best way to REDOX your mito and improve your microbiome to handle exotic bacteria and viruses. 

 

There's an avalanche of info out now about the power of UV light and human photosynthesis.  The Yucatan Peninsula, in particular, has been shown to be ideal in electron transfer while the UK is close to the bottom of the spectrum in that regard due to it's low UV and lack of consistent sunlight.  When it comes to major chronic issues, it's difficult to heal in the environment in which you became ill.   

 

Otherwise, you might try Ivermectin.  It has been shown to be effective in a myriad of infections, including bacterial.   I'm not certain researchers have a full grasp on all of the mechanisms involved but it also seems to be effective in cases involving molecular mimicry.  

Edited by Thirdcatgy, 07 June 2023 - 07:21 PM.

[Lady4T]

One very important thing  I haven't seen mentioned here is diet. Consuming sugar depresses the immune system. 

You MUST eliminate all sugar, starches, etc. in any form (sweets, fruits, bread, pasta, starchy veggies, sugary beverages, etc.).

I must repeat:  Consuming sugar depresses the immune system.

 

Edited by Lady4T, 08 June 2023 - 04:48 AM.

[gamesguru]

I'd be careful with goldenseal, berberine and the likes. It can cause a yeast infection without clearing the actual bug. Just keep an eye on things.

 

You probably need to find the right antibiotic. Responses are often "clade" dependent.

 

Full-panel screening would be helpful. We don't know if anything is affecting your liver, cholesterol, WBC, or other nutrient levels. Lots of the things you're taking are benign, but others can sometimes cause issues. Arginine can cause herpes to flare up, ALCAR and NAC can cause gastrointestinal effects, taurine can worsen anxiety, and cod liver oil can lead to the toxic build up of fat soluble vitamins A & D.

 

I take half a multivitamin a few times a week for added zinc. It's pretty important in immune function.

 

I've found my digestion and the smell of my breath has been improved by making fresh salads, dehydrating my own fruit, eating more genuine wild rice, more savory, spicy vegetables, less processed, refined, and carry-out foods. Yogurt and pickled foods aren't the only source of healthy bacteria, we should make whatever choices we can to improve the authenticity and diversity of our diet. You don't have to fully commit to raw food, or veganism, or intermittent fasting to take a page out of their book and reap most of the benefits.

[ambivalent]

Matt, the most powerful antiobiotic I experienced was high dose vitamin D. Several yeatrs ago I had a severe tooth abscess and threw everything at it including allicin and fasting. I then decided to look up to see if vitamin D had antibiotic properties, I found a paper. I took 200,000 iu a day for two days and got rid of it. Sypmtoms improved after a couple of hours. These doses are not crazy. I would often have recurrences but caught it early with 50,000 iu. 

 

Eg 

 

https://www.ncbi.nlm...les/PMC9154122/

 

https://pubmed.ncbi....h.gov/30611908/

 

 

There seems to be plenty of evidence to support D's anti-microbial / anti-bacterial effect eg:

 

https://www.ncbi.nlm...es/PMC3256336/ 

 

 

This paper though seems to show some caution in pretreating with vitamin D, then using an antibiotic - D seems to reduce the antibiotic efficacy:

 

https://www.dovepres...t-article-CPAA 

 

 

Also fisetin and other flavanoids might be an area to research too.

 

Good luck. 

[ambivalent]

Also need to be mindful of magnesium deficiency when taking high doses of D3 (along with zinc, boron, K2)

[Caravaggio]

Why do you want to take amoxicillin when the pathology report says the raoultella terrigena is resistant to it?

 

It is also resistant to the Fosfomycin that Dorian Grey recommended.

 

I guess your vegan diet is the real cause of the infection and your androgyne body type/low T caused an enlarged prostate.

 

I'd recommend taking a break from the vegan diet and take some zinc picolinate to shrink the prostate.

[MaximilianKohler]

Have you looked into FMT? It can restore microbes that antibiotics killed off, it can reverse antibiotic resistance, I know from experience that it can reverse and prevent some of the detrimental symptoms from antibiotics, and it may be able to directly suppress the pathogen.

 

The hard part is finding a good enough donor.

 

Since you mentioned seeing a urologist, this is relevant as well: https://humanmicrobiome.info/urobiome/

[Matt]

Why do you want to take amoxicillin when the pathology report says the raoultella terrigena is resistant to it?

 

It is also resistant to the Fosfomycin that Dorian Grey recommended.

 

I guess your vegan diet is the real cause of the infection and your androgyne body type/low T caused an enlarged prostate.

 

I'd recommend taking a break from the vegan diet and take some zinc picolinate to shrink the prostate.

 

I did not want to take Amoxicillin. I was looking at Amoxicillin + clavulanic acid (Amoxiclav), which the Raoultella bacteria was sensitive to.

I don't think the vegan diet was the cause. I have a history of 2-3 UTI's before I became vegetarian or vegan or even started CR. It's more likely a local immunity issue as it's not anatomical either. The longest time I have been "UTI FREE" was when I was eating a vegan diet, actually. It was over 10 years. That being said, B12 deficiency could have definitely increased my risk of it in the end.

 

The infection started within about 2 weeks of using Amxocillin for a dental infection and then using the Td/IPV vaccine 1 day after finishing that course. The bacteria may have already been there in low numbers, but had an opportunity to grow once Amox killed off good bacteria and the vaccine probably temporarily reduced my immune system or directed it towards a different kind of response needed. Also, there is some evidence that some vaccines can uncover latent disease or UTI infections. 

 

As for enlarged prostate, no, I did not have an enlarged prostate, as it was checked 2-3 months before the infection started with a DRE. It was small / normal. I also never had any urinary symptoms at that point either. DRE was done due to some gastrointestinal issue at the time, so she checked prostate as well.

 

I had already been taking zinc picolinate before I developed the infection. 

 

Anyway, I was able to raise most of the money I needed for phages and we think we managed to eradicate the infection from the prostate with custom raoultella phages (or if it's there, it's not showing up and in much lower numbers). These phages got rid of the flu-like symptoms, chronic fatigue, exercise intolerance, and pain when sitting. I haven't felt sick/ill since my last cycle of phages ended around November 2023. I do still have minor bladder symptoms left over, though, so we're doing another round of phages which I'll start tomorrow.

 

The latest report from Eliava is attached, which has the results from before and after taking the custom phages. The standard phages I took earlier in 2023 (intestiphage and pyophage) didn't really do much. Nor did I react to them as I did when I started the Raoultella phages. When I started my custom raoultella phage, I started feeling quite ill, my night sweats came back, and fever was greater. And then within days everything started to get better. It was 2 weeks on phages and 2 weeks off. By the 3rd cycle, most of my symptoms were gone.

 

The report from Eliava says planticola, but it was the same bacteria. Eliava used VITEK 2 system to identify the bacteria and it frequently misidentifies Raoultella terrigena and planticola.  I also attached another another culture done in the UK and that came back with very low scanty growth of bacteria, less than <10^3 after the phages. Didn't give the name of it, but finally no significant amounts of Raoultella was found here either. They did see WBC's though, so that could indicate small amounts of infection left over that was not picked up or just inflammation left over.

 

Edit: I'll also mention in case anyone else has issues with antibiotics that sometime around the summer 2023, I was finally able to tolerate Trimethoprim, but it failed to eliminate the infection. Started off at a lower dose of 200 mg a day and then it worked for a few weeks, then stopped working. Went to 400 mg a day and started working again, but over 2 weeks it stopped working.

 

My idea that I would eventually become less sensitive to antiboitics as my nerves healed was correct it seems. Instead of a 8-9 out of 10 nerve pain, it was more like 3 or 4 at its worst. And with taking R Lipoic acid, it was barely noticeable.  I didn't get a chance to try Doxycycline again as I couldn't take them with the phages as tetracyclines are more likely to by antagonistic with phages. 

 

Interestingly, since this happened to me, I found many people who were in the same situation as me. They are unable to tolerate antibiotics due to nerve pain. I helped some of them discover that they also had B12 deficiency. Some of them had nerve pain due to other issues or not identified, but nevertheless, antibiotics would exacerabate the symptoms significantly.

The good thing is that in my case (and could be true for others that don't have progressive neuropathy), as my nerves healed, I was able to tolerate all the supplements I couldn't tolerate well before. And I could finally tolerate Trimethoprim after my nerves healed and became less hyperexcitable. 

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Edited by Matt, 19 May 2024 - 02:31 PM.

[Matt]

Have you tried any "natural" antibiotic substances?

 

You never know what might work. A lot of naturopath doctors would try colloidal silver, oregano oil, coconut oil, and bee propolis. I could send you some for free.

 

Also, if you are taking antibiotics, be sure to take probiotics, or eat probiotic foods (fresh yogurt/raw sauerkraut) to help replenish your gut flora. If you degrade your gut flora too much that will have systemic effects elsewhere in the body.

 

I did end up experimenting a lot with many supplements. A lot of wasted money but did find a few that worked for either weeks to 3 months before they stopped being effective. I wish I had combined some of them together but it was difficult financially, I didn't find them all at the same time, and I was having issues with NaturAlma supplements that contained significant amounts of glycerol, as they also gave me nerve pain (yeah, weird I know...) I figured it was due to changes in osmolalaity. Eventually I stopped reacting badly to the NaturAlma supplements as my nerves healed sometime around summer 2023. Nerves are about 99% better now, just very minor sensitivity that I'm sure will go away.

 

The supplements or medicaitons that worked for bladder and urethritis but dit NOT help the prostatitis

 

Some of these worked for weeks and others like lactoferrin worked for about 3 months before becoming totally ineffective. 

 

- Apolactoferrin

- NaturAlma Bearberry (uva ursi)

- NaturAlma Juniper

- NaturAlma Horsetail

- Myrrh tincture with water or juice

- Hibiscus tea 

- Cysticlean (240 mg PACs)

- Hiprex (this is a urinary antiseptic and it eliminated bladder symptoms in about 2-3 days but caused nerve pain all over my body, same as antibotics).

 

Some of these worked for weeks and others like lactoferrin worked for about 3 months before becoming totally ineffective. Taking Myrrh tincture and drinking hibiscus tea right now and these two help my bladder quite a bit. Symptoms are pretty mild and don't affect my life that much.

 

Supplements or teas that did nothing at all to help

 

- Olive leaf extract

- Oil of Oregano

- D Mannose

- Forskolin
- Allicin Max

- Green tea (matcha)

- Grapefruit seed extract

- Quercetin + bromelain

- Goldenseal

- There are others I tried but I forgot the name of them

 

 

Hope this can be helpful to someone who comes across this post.

Edited by Matt, 19 May 2024 - 02:22 PM.

[Mind]

Thanks for the update Matt. Good information for others who might suffer something similar.

[adamh]

You mention pain and flu like symptoms. Are you tired all the time or are you able to carry on with life? Are you able to exercise and do you feel better or worse the next day? If you are very active one day do you feel worse the next day? Brain fog, other symptoms? You may have something else going on besides a bacterial infection. That something else might benefit from a different treatment and not antibiotics, which is why I asked. I'm not downplaying the bacteria but it could be something more than that like cfs