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First of all, I want to say a huge thank you to everyone who has donated so far, I appreciate it so much. It has allowed me to start testing and allowed me to have my first consultation with the urologist Mr Oleg Tatarov at Spire in Cardiff (more on this later).
However, I’ve still fallen short with the money I’ve tried to raise, so I have not been able to start any kind of phage therapy, as I do not have the funds to pursue the consultations and tests that the urologist wants me to do, and also start phage therapy with standard phages aimed and typical pathogens.
I’ve waited to make this update because I wanted to get a clearer picture about what is going on with me. There have been things that I’ve figured out during these past few months and results that were surprising, but need to be confirmed.
You can see my previous post on what happened to me here.
How am I generally?
I still don’t feel well, every day I feel like I am sick, but I’ve found that taking ibuprofen day (3 x 600 mg) every 6 hours helps reduce some of the symptoms and allows me to be more functional and work more hours, so I can save for tests and future treatments. I’m still not able to work as many hours as I used to, but it’s an improving and more bearable.
I tried once again to treat the infection just before Christmas using Doxycycline, but once again, I developed severe nerve pain all over within 2 days. It was unbearable. The level of pain from neuropathy went from a 2 (on a scale of 1-10) to an 8. It was impossible to continue.
When I took the Doxycycline, though, the symptoms I’ve been suffering with started getting a lot better again. I notice how clear my mind becomes, too. It’s crazy how much systemic inflammation can change how your brain functions. It’s like a fog that lifts, when I start treatment.
Before Christmas, on the 23d, my grandmother passed away. 🙁 So we were all dealing with that here. During the next few weeks after this happened, my infection and everything I had planned to get sorted, got pushed well into January.
Discovering a very likely B12 deficiency
During this time, I had time to do more research as I wasn’t working, and I realized that a lot of the symptoms I had experienced over the past year, sounded awfully similar to a Vitamin B12 deficiency.
I started taking 5000 mcg of B12 on the 27th of December and noticed a rapid improvement in my nervous system within just 2 weeks. It has been the most effective supplement I’ve used.
There are good reasons to believe I do have a B12 deficiency: first, I had a low but normal reading back at the beginning of 2022. I developed stomach problems which persisted for 4-5 months (gastritis and gut motility problems). I also had COVID, and I developed a flare up of a long-standing dental infection which required Amoxicillin.
I then had a tetanus shot, and 2 days later noticed that my hands, feet, and thighs were burning. I initially blamed it on the shot and an overactive immune system. However, I’ve come to the conclusion that this wasn’t what happened. I believe the shot simply unmasked nerve damage that I already had due to a B12 deficiency.
I believe everything that had gone on during that year, caused my B12 stores to get used up faster. I was also complacent with B12 and had stopped supplementing for an entire year. My diet only contained 1 mcg of B12 all year, due to swapping out a fortified soy milk product for a non-fortified version. I messed up, but there were founding factors.
I’m going to write a whole post on B12 deficiency and all of my symptoms. It was vague, and really did creep up on me. It was not obvious at all…
My first consultation with my urologist
So, very recently, I had my first consultation with the urologist. I explained to him my symptoms and everything that I had tried. I explained to him how I responded to antibiotics (although I think I never communicated well that I only managed 4 days maximum).
Given the significant side effects that I had due to the antibiotics, he wants me to me more cautious on proceeding with taking any more of them for the mean time until do a few tests to rule out some issues.
He wrote me a clinical letter after the appointment and he wants do ultrasound of the urinary tract (kidneys, bladder, etc) and do a urine flow rate test. He wants to see if I am urinating everything out of the bladder.
After having these tests, which looks like it will come to around £600! – he wants me to go back to him and then discuss how we can treat the problem. He told me this is the way things are done, it’s just procedure to rule out things that could cause issues like mine.
To be honest, I expected him to prescribe me antibiotics at the appointment; but he explained that since prostatitis is mostly nonbacterial for most people, we will rule out other issues first before going down that road and throwing any kind of antibiotic at the problem. I also quite reluctantly agreed, especially given how I’ve had such bad reactions recently (which I now know, B12 deficiency has made me more susceptible to these side effects).
Which tests have I had done so far and what will I do from here?
The Eliava testing cost 170 Euros (urine & seminal) – I paid for this prior to the fundraiser. And the IVF matters test cost £70. I’m repeating this one more time as well.
This is one of the labs I used (one of the best in the UK): https://www.tdlpathology.com/
What have the found?
Staphylococcus Haemolyticus – less than <10,000 CFU/ml (likely contaminant)
Enterococcus faecalis – 1,000 – 10,000 CFU/ml (likely contaminant)
Raoultella Terrigena 10,000 – 100,000 CFU/ml (found on two separate tests).
I had done two tests, one with Eliava (detected Staph), and a second with the Doctors Laboratory in the UK (one of the biggest and best labs for testing), and they discovered Enterococcus and R Terrigena.
So, let’s talk about that last bacteria! That is highly unusual, and very rarely infects humans. And it also concerns me the most because it’s often very resistant to many antibiotics (MDR), and mortality rates are very high because of this. Although, these studies are with patients with multiple comorbidities, hospitalized patients, and therefor there is little data about the general course of the infection.
Honestly, it has kind of freaked me out but I’m trying to stay relaxed and from here I have decided I will repeat the test twice: one with Eliava and another with Doctors Lab again. Given the fact that the R Terrigena didn’t show up in the Eliava testing, I am inclined to think it was contaminated (at least I hope so). But I’m still worried because it can be a very serious bacteria.
If the bacteria once again changes, then there is clearly an issue with contamination (which is common). But I also have different doctors giving me different answers about the importance of these tests. So it’s all very confusing, but not entirely unexpected either.
Once I get the results back, if they are consistent this time, I will look at how I can treat them. If they are different, I will have to obtain a sample another way, but it’s more expensive, and, well, invasive. But EPS to obtain a culture is the gold standard and should clear everything up about the actual organism causing this problem. I would have liked to avoid this, but it looks as if this might be the only way I’m going to get a clear answer.
I would like to start phage therapy already, but as I have mentioned, if I begin treating empirically with phages, I will not have enough money left over for the urologist. This is why I’ve had to be careful about how I am using the money that I’ve so far raised. If I had raised the money already, I could be doing both right now. But I do want to proceed with phage therapy as soon as possible, it’s just very expensive at £1200 for standard phages.
I’m going to repeat the cultures again over the next 10 days.
By then I will hopefully have had the scans all done and setting another consultation with my urologist.
I feel frustrated that all of this is taking time, but I don’t have unlimited amounts of money, so I’ve had to be extremely sure about what the problem is before throwing money about, especially when it comes to phage therapy, which is best used when you know the exact bacteria causing the problem. If I had the money, it would have probably been a lot easier to simply travel to Georgia to the Eliava Centre and have every test and scan I needed there, and then begin treatment.
I’m going to make an audio recording very shortly, to talk about all of this more. It’s just very difficult to sit at my computer right now due to the pain.
If you want to help me try Phage Therapy, you can support here, thank you <3