Matt

Thanks everyone! 🙂 Some initial results I got back from a second culture since finishing the phage treatment (this time testing in a lab in the UK). Again, very little bacteria found. They say very scanty growth of less than <10,000 cfu/ml and doubtful significance. I guess the final report will tell me the name of the bacteria? What was seen this time was white blood cells, indicating some inflammation still. Maybe after having the infection so long, the inflammation is persisting. It's plausible that this is what's causing some minor symptoms for me. Or maybe the bacteria is just deep in the prostate and not showing up. I've no idea... Either way, I think I will go ahead sometime before April and just to do another round of the custom phage and see what happens. It can't really hurt anything as they are so specific, unlike antibiotics. The symptoms do still feel different now. Although I am still needing to take ibuprofen at times, I'm not feeling sick/ill anymore as I was prior to phages. Which might indicate it's just inflammation I'm dealing with. Or the bacterial load is just too low to feel systemic symptoms. Good thing that my nerves are almost completely better now after taking B12 for over a year as well, so I might be able to take Doxycycline at some point if needed (I don't react badly to any of the supplements or Trimethoprim anymore, so I should be fine I guess?). But I'm going to avoid using it right now because I know nerves can just take a very long time to heal completely and become physiologically normal (not hyperexcitable / irritated). Last thing I want to do is have a setback when it's not necessary and my symptoms are so minimal. My bladder has minor symptoms. It could again be inflammation left over from having an infection for so long or a low level infection still on going. Anyway, I told myself that it would take about 2 years go resolve these problems. That would take me up until September. I think I'll get there. 🙂 I've made huge progress so far!

The main bacteria, Raoultella, seems to have been eliminated since taking the custom phages!!! 🙂 I am a lot better, thank you. I have some minor symptoms left, like irritaion of the bladder if I drink cranberry juice or something irritating. Slight urethritis but it is getting better. Ideally, I would have urethra installations of phage, but that was not a possibility in the UK with remote treatment. Other than those symptoms, I am fine! I don't feel sick anymore and I am working full time again. I'm likely going to do another round of custom phages, just in case the bacteria is not showing up but is deep in the prostate on within biofilms in the bladder. It's possible, since in my previous experience many years ago, this condition can pop back up again months later after I had treated with antibiotics. It'll cost 900 euros. I thought it was cheaper, but for 20 boxes of custom phage, that's what it is. Not too bad, and a lot more affordable than paying for the whole package as I had to do before. As long as I order it before April, I am able to just pay for the phages. 🙂 Over the next 2-3 months, I am going to test locally, and see if the bacteria shows up again. The staph bacteria that showed up is insignificant and we agree it's almost certainly contamination. The raoultella is the main bacteria that kep showing up in multiple tests before. But so far it's looking good! Thanks again for the help 😃

Thanks both! This is the BEST I've felt in a year. I feel so much better right now. It's worked so well so far, I honestly can't believe how quickly I am getting better day by day. I'm not even through the 1st cycle out of 3 yet. Because of the immune system response, I have to take breaks of 2 weeks every 15 days. Once I get through the first course, I'll repeat the samples. If needed, I can just repeat order the raoultella phage and it will be done much more quickly as they already have it. Plus it will only cost 300 or 400 euros or something (can't remember), so not too bad. Sometimes these infections can be cured in one course, sometimes it takes two. We'll see... But yeah, hopefully all this will be behind me shortly!

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! 🙂

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.

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!

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/

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.

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 😃

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. 🙂

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?

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?

Phages arrived! 🙂

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 🙂

Going to order this standard phage treatment this week. And then hopefully order the custom phage cocktail to be created once I get the funds. I will definitely be writing about my experience here, it could help a lot of people. Not a lot of people in the UK or US even know about phages and they are a treatment option which can and does work for people who use it. There have been many who have cured prostatitis using them, so I'm hopeful here. It's good that I was able to isolate the bacteria, otherwise this wouldn't be possible. There's a good 3 part episode on Bacteriophages here, very interesting...

Amoxicillin poorly penetrates the prostate, this is the big problem. 😞 I had prostatitis from 2005-2012, it took me 7 years to cure it with months and months of antibiotics. In the end I cured it with Doxycycline, and was completely symptom free for 10 years. I tried Doxycycline a few times in the past few months and every time I had extreme neuropathic pain all over my body. Same for Trimethoprim. I think I may have figured out the mechanism behind Trimethoprim, but I really don't know. It was a lot easier to deal with before because I was able to treat with those two antibiotics and never had side effects. Which is so frustrating because I have not been able to use them this time due to neuropathic pain. Phages have been used successfully many times to cure prostatitis (I shared these in my other thread and on my blog), and it is more effective when combined with antibiotics - which helps prevent the development of resistance. I've also spoken with a few people who had their infection cured with phages. The NHS here is looking at scaling up the use of them, but it's very slow. The infection I have is also R. Terrigena, not R. Planticola. Eliava used the VITEK system which misidentifies the bacteria often. Two of my tests were R. Terrigena using more up to date or better systems in London. https://pubmed.ncbi.nlm.nih.gov/27735805/ "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." 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 Also, this is why it's so worrying to me. Yes I am otherwise healthy, but there's very little information about the general clinical course of this type of infection "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."

Thank you for the the help Gordo, and Dean, I really appreciate it. I had a message from Lana yesterday. She said what we can do is pay for the standard treatment package 1900 Euros and then I'll have the standard phages sent to me and have the rest of the stuff mentioned in the package. And then once I get enough money for the custom phages, I'll pay for that and then they'll start creating them. The chances of standard phages working here are quite low, however. The closest phage would be ones that target Klebsiella. Custom phage can take 8-12 weeks to create. So still a lot of waiting time. Hence why I want to get this process started asap. I'll upload some photos and video of the phages when I get them. As for antibiotiocs, many of the ones on the antibiogram are 'last resort' antibiotics that are used in hospitals and many of them are high toxic in one way or another. Not ideal at all really. Amoxiclav: I have it here, but I need to speak to infectious disease specialist shortly. My doctor has written to him at the hospital. The best approach is to combine phages with antibiotics so prevent resistant bacteria from emerging.

I don't really like doing this but I'm actually a little bit desperate to end this infection finally, as it's been a nightmare and ruining my health for the past 6 months almost. It's probably the worst thing I've gone through. I need to raise the rest of the money for to begin phage therapy treatment. This won't cover all over it as I've used quite a bit of the funds with tests, appointments, a few supplements, and so on But raising the rest here will cover most of what I need. And then I can pay the rest when I get paid at the end of the month from my job. If you can spare anything to help me out here, I would appreciated it. When I am better, I will give back, in some way. You can see my GoFundMe here https://www.gofundme.com/f/donate-to-help-me-beat-this-infection I've done a couple updates, as well as updates and reports on my blog. I've also got a thread here on CRSociety forums Thanks for your support all.

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.

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.

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

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. 😢

I do believe that I am on the right path now. The issue now is how to proceed from here. How long does it take for extensive remyelination do occur in humans? I am noticing gradual improvements in my nerves over time. The burning sensations have mostly gone now and are only present here and there and for a few seconds, usually when in bed under the blankets. I am noticing that when I am sitting down (on the toilet for example) or leaning against things with my elbows, forearms, or hands... my limbs are not tingling as intensely anymore. I am guessing this indicates demyelination of large fiber nerves, making them more susceptible to reduced conduction even under mild compression. The tingling mostly shows up distally, around the feet or hands, rather than the whole limb, though. I'm waiting for another bacterial culture result this week. I should get it back tomorrow. Then from there I will have the weekend to think about how I should proceed from here. And that's when I'll make the update. I may just do a voice recording and post it on my blog, as it's quite difficult to sit at the computer and type of this out with how I am right now. I'm tempted to try another antibiotic like Pivmecillinam or Fosfomycin. The urologist appointment is going to cost £195 to have access to these. And I think because it's private, I will have to pay for the medication, too. Fosfomycin is £25 per dose, and I may need to take it for weeks (every other day). I have to be very careful about how I spend the money that I've raised so far. It's not like I have unlimited amounts of money to start throwing it around without thinking what is the best approach and one that will help stay within budget. I've asked a few friends about what I should do, some suggest I just give it another 2 months or so to wait until my nerves heal more before trying any kind of antibiotic. This is mainly to reduce the risk of further toxicity when nerves are hypersensitive. So that would leave me with trying phage therapy first (the most expensive option). A couple interesting studies I came across showing that Doxycycline can be neurotoxic directly or indirectly. While this is not the same thing exactly, the first study does say that Doxycycline can disrupt myelin sheath and cause inflammatory reactions to unprotected nerves. Which I guess may make sense in the context of B12 deficiency and demyelination? Histologic effect of doxycycline sclerotherapy on rat femoral nerve "Results: The results suggest that topical doxycycline induces tissue reactions which are different from normal saline. These reactions include stimulation of a local giant cell inflammatory reaction and disruption of the myelin sheath." "Conclusions: Despite the fact that this study does not give physiologic evidence of neurotoxicity, the histologic results suggest that topical doxycycline may cause nerve damage directly or indirectly. We conclude that doxycycline should not be used for sclerotherapy where unprotected nerves are exposed to the agent until further physiologic tests are performed to prove its safety." https://pubmed.ncbi.nlm.nih.gov/8902563/ Neurotic effects of doxycycline sclerotherapy "Complete nerve block was seen frequently. This effect was not seen with topical application of doxycycline or normal saline solution or with intraneural injection of normal saline solution. This study demonstrates that doxycycline can induce a marked decrement in neural function when applied to the subepineural layers of the sciatic nerve in the rat. Therefore doxycycline sclerotherapy should be used with great caution in situations in which it could become exposed to nerves that have sustained surgical trauma." https://pubmed.ncbi.nlm.nih.gov/9527117/ I also found this from the NHS website, which says that Trimethoprim can induce B12 deficiency. I know that it has the ability to induce folate deficiency in humans, as that is it's primary antibacterial mechanism. *Other causes include; malabsorption, diet, Combined Oral Contraceptive pill (COCP), pregnancy, drug induced B12 deficiency – includes Metformin, Trimethoprim, Colchicine, Neomycin, anticonvulsants, long term use of PPI or H2- antagonist drugs. • *MHRA now advises V" https://www.nottsapc.nhs.uk/media/1330/vitamin-b12-treatment-guideline.pdf Someone on reddit replied to my post about this issue with antibiotics. And she said that she said she had "recreationally used nitrous oxide". This induces B12 deficiency by inactivated B12 in the body and can be quite serious. What was interesting here is that she ALSO had issues with Bactrim (also contains Trimethoprim). She would get intense burning all over here body, just like I was experiencing. I think all of this is starting to make sense and it actually does feel like my nerves are healing now, rather quickly as well.

Thank you all, I might've had a bit of a breakthrough recently and I can't believe I missed this. I've had to figure this out for myself as my doctors have been almost useless sadly. They don't have the time to try to figure this out with me when I'm just pushed out the door in 10 minutes. I had time off work and was able to do more research and try to really think about the sequence of events, without any kind of bias towards what I thin may have caused all of this and what could actually be going on. So I'm going to continue to document here just in case anyone else ends up in a rubbish situation like myself. So let's start from early 2022: Feb 22 - Joint / muscle pains I develop Omicron infection sometime late January or early Feb 2022 (I don't remember). My only symptoms were muscle aches and feeling of strained/pulled muscles or tendons. It was odd, but these symptoms persisted for quite a while (weeks) and then eventually faded. However, on and off throughout the year I would get muscle pain or joint pains, mainly in my legs, and particularly in the morning. I attributed this to my on-going dental abscess as I had experienced this around 2006 until I had removed the tooth and then it went away. March 22 - Palpitations. higher heart rate, dizziness / lightheadedness My doctor said anxiety, gave me a beta blocker (never took it). The dizziness went away but palpitations and higher heart rate remained throughout the year. Briefly helped after taking out tooth but both issues came back a week or more later. April to August - chronic gastritis and gut motility issues / gastroparesis, with constant use of antacids for months. This lasted months, no idea what caused it, but I had feeling of overwhelming fatigue, weak hands and legs, and my bowels were not functioning correctly. Doctor said IBS. I started a multivitamin in July and other supplements, and then by August the issue had resolved. Spring / early summer 22 - Twitching muscles, pain at back of legs when walking long distance, dizziness and vertigo Hadn't gone out much as I worked from home, but was still mobile around the house and garden. Went for a walk one day, maybe around April and noticed that the back of my legs were painful and muscles were tight and stiff. I had barely started walking... Never had experienced this before even with deconditioning over months in previous years of being just, well, lazy and staying home a lot. I had dizziness on and off but it would generally go away after a few days. I put this down to BPPV. A benign condition where calcium particles go into the wrong back of the ear. August 22 - shortness of breath I met up with my friend, and we took a walk and just talked and caught up with each other. At normal walking pace, I noticed that I was easily becoming out of breath when walking and talking. I had no chest tightness, no chest infections recently. I thought it was a bit weird at the time but I put it down to deconditioning over the past few months. September 22 - Neuropathy I develop a tooth infection flare up and get put on amoxicillin. It helps with the infection and things calm down. One day later I take the tetanus vaccine and two days after that I develop burning sensations on my thigh and hands. I automatically connected the vaccine with the neuropathy. Weeks later I develop an infection / UTI and then I start taking Doxycycline and then Trimethoprim, both significantly exacerbating neuropathy and I was unable to take them. September to November Dealing with prostatitis and neuropathy at this point. My symptoms were low grade fever, brain fog, overwhelming fatigue, night sweats, feeling generally unwell. Weeks of dizziness and vertigo. Increased muscle pain, gut issues, twitches and increased palpitations. Minor and odd symptoms appeared in October to November - sores all over my tongue and it was painful to eat. - Angular cheilitis (I had no idea what this was until today! But they lasted weeks. ---------------------------------------------------------------------- So let's just do a quick list of ALL symptoms I've experienced and and off during 2022: - Vertigo / dizziness lasting days at a time - Gastritis / gut motility and IBS-like symptoms (I had fatigue and weak arms/legs during this time) - Worsening eyesight / can't focus with right eye on things in the distance - Tingling when resting against things, sitting on toilet, etc. - Very cold feet and poor nail growth on feet - Cramping in back of legs when walking. Muscles feeling stiff. Joint / muscle achiness mainly in morning. Curling foot and cramps during the summer when pointing toes forward. - Daily palpitations, many throughout the day - Increased heart rate - Anxiety on and off - More tinnitus spikes - Mouth sores and sore tongue (sept). Would bite side of my tongue often this year... - Angular Cheilitis - Tingling / burning sensations over my body (very prominent after vaccine in September) ------------------------------------------------------------------------- WHAT IS THE PROBLEM???? I attributed many of the symptoms to the on-going dental infection. My doctor attributes many things to anxiety. I blamed the vaccine for the neuropathy. Some of these might only be partially correct, and other, wrong. I spoke to my mother and she experienced most of these symptoms when she had a B12 deficiency. My dad experienced some of them when he had a B12 deficiency and had injections. My aunt who I just spoke on the phone with yesterday has a B12 deficiency right now and many of the symptoms were identical to hers. I've been watching stories on YouTube about other people with B12 deficiencies and their stories are almost identical to mine. So I need to go back to Feb/March 2022. I took a blood test and it showed that I was in the normal range of 371 ng/L. For that reason, I did not even consider that B12 could have been the issue. However, I've since found out that Serum B12 is not totally accurate with levels below 400 ng/L. You can still have a functional deficiency at this level. Between 200-400 is a grey area. More accurate tests is active B12 or MMA. I've read plenty of stories now how people have been in the 200s and 300s and had neurological effects and other B12 deficiency symptoms that went away with B12 injections. Now considering some facts I stopped supplementing my multivitamin in July 2021. I forgot to replace B12 with a supplement. I've calculated my B12 intake as approximately 1 ug / day B12 because my diet is vegan. Meaning, for an entire year, I was very deficient in B12 in my diet. Now consider the fact that I went through many months with gastritis and stomach issues, for which I was taking antacids and my diet was even more restrictive. I may have developed an issue with absorbing the B12 from my diet that I did get from the fortified foods. I'm trying to think as hard as I can but it's difficult to know if I had developed very early signs of neuropathy even prior to the vaccine. I honestly don't remember, because if I had, they were very subtle. i.e when mildly compressing nerve, it tingles more easily. The sore tongue and angular cheilitis These both developed a little after I took the antibiotics that further worsened the neurological symptoms such as burning and tingling. They persisted for weeks and I had no idea they were signs of B12 deficiency. WHAT MIGHT'VE HAPPENED 1. I think that if I had low B12 stores, the infections, vaccine, antibiotics, might've worsened the situation. With nerve damage, there is an increase in demand for B12 and this would have depleted my B12 even more. And from July to December, I was only taking in around 160 ug/ day of B12, which is nowhere near the amount you need to recover from a B12 deficiency and correct neurological effects. Typically, this requires injection or very high dose supplementation if no issue with absorption. 2. I think that my B12 test that I had around Feb 22, although "normal", it can still be deficient in a small number of people. And furthermore, with all the stress and increased demand from my body for B12, this ultimately lead to a worsening deficiency over time. I've looked at B12 blood results from other people who became B12 deficient, and it can in some cases drop rapidly. Ultimately, I'm never going to know what my levels were in September, but it's not hard to believe they were somewhere in the 200s with such a deficient diet. 3. The vaccine might've only been partially to blame but the underlying issue might've been low B12 levels / stores and not enough to repair the damage to myelin, which was further exacerbated by the antibiotic intake (trimethoprim is one antibiotic that affects folate and can induce a B12 deficiency). More damage, means more need for B12. B12 is also important in regulating an overactive immune response with Tregs. 4. I think that my bizarre responses to these antibiotics might've ultimately be caused impaired cell metabolism from lack of B12, demyelination and fragile myelin, leading to abnormal nerve cell function and oversensitivity to antibiotics. 5. From my research, I've found a few case reports with COVID vaccine in vegan and vegetarians, where both had neurological side effects from the vaccine and were found to be B12 deficient. The researchers hypothesized that the deficiency predisposed them to the side effects. Interestingly, injections of B12 rapidly cured one person and significantly improved the other within a month. Also, in chemotherapy-induced B12 deficiency, it's found that a B12 deficiency can lead to worsening neuropathy with treatment. In an interesting case study, a woman developed grade 3 neuropathy and she needed to stop treatment. They found she was B12 deficiency. Once they corrected it, she was able to resume treatment and her neuropathy did not progress beyond a grade 1. I HOW DO I FEEL NOW I AM TAKING B12? It's been about 9 days so far and here's what I've noticed - The burning sensations are about 90% better in terms of severity and 90% less frequent - The tingling is now largely limited to my feet and hands, but mostly left foot (this foot got bad after I took trimethoprim) - My mind is a lot clearer and the brain fog is gone - My palpitations have completely gone since I started taking B12 5000 mcg. - My muscle pains seem to be getting better slow, but I need more time to judge this one - Vision in my right eye has improved significantly - My heart rate is more consistently lower - My body temperature is lower - My prostatitis symptoms are more manageable (could be just a coincidence as there have been quiet periods before; but I'm also being more consistent with Ibuprofen lately). I may have screwed up and I didn't put it all together because I and my doctor were blaming other things the entire time. I WISH I had done a blood test around July or September, but because I was within the range in Feb (before I developed the stomach problems for months), I thought it was a very low chance of it being related to B12. Although other supplements have helped my nerves, none have come close as taking B12. I was meant to start taking it months ago but I completely forgot about it 😞 -

I never noticed any effect on libido or sexual function while taking Finasteride. It does happen of course, so you just gotta weighs up the benefits and risks and what is acceptable to you.