It won’t be long and it will be one year almost since I developed a UTI and have been unwell. 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.

I’ve gone through several medications and supplements and many of these were very effective at eliminating all my symptoms but I was unable to tolerate them. No one can really answer why I am not able to tolerate anything that helps me. I’ve been lucky to find some supplements that worked for a few months, which gave me a bit of a break from this, but sadly they stopped working.

The infection I am fighting is Raoultella Terrigena, which I shared in my lab reports previously.  This is an opportunistic bacteria and is gram-negative. Interestingly, and could be relevant, it is also a histamine-producing bacteria.

Since August 2022 I have tried several things:

Medications (all effective at eliminating UTI symptoms while on them)

1. Trimethoprim
2. Doxycycline
3. Hiprex (antiseptic)

Side effects: All of these cause burning, twitching, buzzing, and electric shocks in my skin. I also had a dull constant pain, similar to descriptions of fibromyalgia pain. I also experience dry mouth, increased middle ear fluid, and increased tinnitus.

My recent experience with taking Hiprex for 5 days was particularly bad in that it caused my legs to become very weak and I had difficulty walking.

I have experience in taking Trimethoprim and Doxycycline many years ago without issue. So why am I reacting so badly to them now?

Hiprex is something I had never taken before but it is extremely safe. However, I had the exact same reaction to Hiprex as I did with both of the antibiotics I tried.

Prior to receiving tetanus, polio, and diphtheria shot in August or September 2022, I was able to tolerate Amoxicillin with no side effects at all.

I’ve only been able to tolerate all of the above medications for 2 to 5 days.

Supplement List A (all effective at significantly reducing UTI symptoms)

1. Uva Ursi (bearberry) – antibacterial.
2. Horsetail – upregulates factors that inhibit the adhesion of bacteria in the bladder and it has antiseptic properties.
3. Juniper – Antiseptic properties.

Side effects: Uva Ursi and Horsetail both cause neuropathic pain. The same side effects as I experienced with the antibiotics and Hiprex. I’m taking Juniper right now and I’ve only just started using it so I don’t know if it will cause the same side effects yet.

Supplement List B (effective for only approx 3 months)

1. Cysticlean – cranberry supplement, standardized for PACs. These inhibit the adhesion of bacteria to the bladder wall.
2. Apolactoferrin – inhibits biofilm formation and limits iron availability for bacteria to utilize.

Side effects: There were no side effects with Cysticlean or lactoferrin.

Supplement list C (not effective)

1. Olive leaf extract
2. Oil of Oregano
3. D Mannose
4. Forskolin
5. Allicin Max
6. Green Tea
7. Grapefruit Seed Extract
8. Quercetin + Bromelain
9. Goldenseal

Side effects: No side effects with any supplement on this list. None of them helped with UTI symptoms either.

Figuring out why I am reacting badly to everything has helped reduce my UTI symptoms

This has been a puzzle that no one has yet figured out and I’m pretty much left on my own. I do not have the money to be paying privately for all these specialists and tests. And the NHS waiting list is 3 years to see an immunologist to figure out if I can be desensitized or if this is some kind of neuro-allergic reaction.

I am leaning towards my reactions being immune system-mediated. And trying to figure out a way that I can tolerate supplements or medications without destroying my nerves in the process. But honestly, I really don’t know the answer and everyone I have turned to has no idea either.

My initial thoughts were that it could be one or a mix of the following:

• Chemical irritation of already sensitized (irritable) C nerve fibers.
• Mild hypersensitivity to these medications and supplements which causes a cascading inflammatory reaction to due hyperexcitable nerves (if nerves were healthy, there may be no reaction?)
• Increased histamine from Raoultella when under stress and/or LPS and other exotoxins and endotoxins causing nerve pain.
• Mast Cell Activation Syndrome.
• Multiple Drug Intolerance Syndrome.

I have tried taking quercetin to help with mast cell stabilization and I have taken up to 40 mg of loratadine per day without much success. It only allowed me to double the number of days I could stay on Uva Ursi from 3 to 6 days until the pain became unbearable.

When I first tried the antibiotics back last year, I developed the symptoms mainly in the hands and feet. Interestingly, in the last few attempts I have made with supplements, I have not had any burning in my hands. It’s as if the nerves have healed in my hands and  I do not experience these nerve pains in them like I did in 2022.

This might support the idea that if my nerves were healthy, I wouldn’t have an issue taking any of these medications. I was hoping to get by on Cysticlean, Lactoferrin, and Beta Glucan as they were working really well for a while, but they just stopped being effective. I guess the bacteria adapted. During this time, my nerves were allowed to heal very nicely.

But nerves take a long time to become physiologically normal. It can take months to years. My nerves have been healing very well since taking high-dose B12 last December. But it’s like 2 steps forward and 1 step back when I am trying all these medications and supplements that are hurting me. Before I took Hiprex, my nerve pain was a 0 or 1 out of 10. Now I am still recovering from the damage left behind.

And I’m not sure I can deal with this for years and not have the UTI treated. I am also still waiting for my NHS appointment, but the average waiting time is 54 weeks, and it’s not even been one year yet. I think it will be around November.

What is also interesting is that all the medications and supplements that help me, also cause side effects. And all the supplements that did nothing to help me, did not cause any side effects.

Phage Therapy

So then, what will be the result of Raoultella phages once I get them? That will be interesting!

I have already taken the standard phages, and there were no side effects at all. But sadly, they were not effective. And this is not a surprise because none of the phages within the commercial phages target Raoultella.

I used them for a couple of reasons a) to prevent any other bacteria from taking hold while in a vulnerable state b) in case there were other bacteria involved that weren’t picked up by tests.

I am still waiting for my custom phages. It’s already been almost 18 weeks now. Apparently, this bacteria is difficult to work with. And it’s done when it’s done, basically. The viruses have to be evolved to kill the bacteria, and it takes time. Usually only 8-12 weeks, but I’m unlucky I guess.

I saw this story recently about a woman who was cured with phage therapy in Canada. There is a clinical trial with over 200 women that will use phages to cure their infections.

Let’s hope Phage Therapy is the answer.

If these custom phages work and cure me, then I could get back to enjoying life again. But even if it doesn’t cure it totally, but keeps it under control, that would be a win for me because it will allow my body and nerves to heal. I think once they heal, I may be able to tolerate antibiotics again much better.

Also, repeat orders (if I need them) will be 400 euros for 10 boxes of custom phage, so I won’t have to pay the full cost again.

This has been physically, emotionally, and financially a massive drain on me. But I appreciate all the help, and would not have been able to try phages so quickly without it.