8 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

 

Attached Files

•  1930880147_LABREPORTTEST3.thumb.jpg.8ab9c52bec258de64324328649af9b88.jpg   80.78KB   0 downloads
•  phage.png   372.03KB   0 downloads
•  Eliava.png   85.67KB   0 downloads
•  1.png   46.51KB   0 downloads

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.