Disclosure: This article may contain affiliate links. If you decide to make a purchase, I may make a small commission at no extra cost to you.
For around 6-7 weeks now I have been suffering from a bacterial infection called chronic bacterial prostatitis. It’s been extremely challenging for me because it affects almost every aspect of my life. I’m in constant pain, I have low-grade fevers, chills, night sweats, malaise, burning urination, and perineum pain. I can’t even sit down without being in pain, nor can I lay on my back some days when the pain gets intense.
I’m struggling to continue to work the same amount of hours as I had been for years. I continue to live on 4-5 hours sleep most nights. The rapid changes in body temperature and pain seem to affect the quality and duration of my sleep.
I’ve tried 2x 500 mg paracetamol with 30 mg codeine, but even that on some days is not enough to get rid of the pain.
I feel like I have the flu almost every day while not taking an antibiotic. What should have been fairly easy to treat, has turned into a complicated problem because even though I respond rapidly to antibiotics and I feel well again within a day or two, I am experiencing intense nerve pain in my feet and hands. This includes painful tingling and burning skin sensations. When I stop the antibiotics, the pain starts to settle down and gradually gets better.
If the treatment was only 1 week, I would put up with it and do all of the course. The problem is that to treat this infection, I would need to keep taking the antibiotic for 4-12 weeks.
What have I tried so far
When the infection started, the symptoms were quite mild and didn’t bother me too much. It started as urethritis, burning urination, with frequency on and off. Drinking a lot of water, tea, and taking D mannose did nothing (D mannose only works on E coli).
By the time I got Doxycycline from the doctor, I started to get systemic symptoms like chills and low grade fever that would come and go. I wasn’t too worried, I started taking the Doxycycline, but then after a few hours I noticed an intense burning sensation in the palms of my hands and twitching of my muscles.
Concerned about this I called the doctor and explained the symptoms and we were both a bit perplexed about the side effect. It’s not a common one at all. In fact, I’ve taken Doxycycline in the past for months without any issues at all. But now I am unable to tolerate it.
I waited about 10 days and then I tried Doxycycline again, I thought maybe it was something else or a coincidence that I felt that pain the night I took it before. And then I got the same burning sensations come back in my hand, feet, and thighs, within about 3-4 hours of taking the antibiotic.
I then switched to Trimethoprim and at first it seemed fine but by day 3 I experienced very intense burning sensations and tingling in my legs and arms. I stopped the antibiotic after just 2 days.
Just recently, 5 days ago or so, I could not stand the pain anymore or the fevers and so I tried Trimethoprim again, but at a reduced dose of juts 1 x 200 mg. At first it seemed fine and most of the neuralgia settled by the evening after I took a dose in the morning. However, on the 4th day, one spot on my ankle and foot developed painful tingling and burning. I was losing sensation in my foot.
Trimethoprim, like Doxycycline, appears to be very effective in eliminating my symptoms and quite rapidly. But due to these side effects, I am unable to tolerate them and take them for the 4-12 weeks that is required. I risk serious nerve damage if I continue to take them.
I’ve also tried many different supplements and most don’t do anything at all as far as I can tell, but I continue to take them anyway as they supposedly to help reduce inflammation. I’ve discovered that Cranberry juice helps with the burning urination.
Bacterial prostatitis is tricky because most of the antibiotics don’t penetrate the prostate in high enough amounts to work. Trimethoprim and Doxycycline, along with Quinolone antibiotics (I can’t take Cipro), are the main treatments for this infection. And I am unable to take any of them, at least right now with this nerve issue.
What caused the nerve pain?
The first time the nerve pain showed up was actually 2 days after I had the Td/IPV vaccine, which covers Tetanus, Polio, and Diphtheria. I had not experienced any symptoms of neuropathy since I took Cipro in 2007, which I completely recovered from.
My immune system seemed to overreact to the vaccine and caused damage to my nerves. And I wonder if this has lowered my tolerance to the antibiotics or if the antibiotics I am taking is worsening some kind of autoimmunity problem and stimulating the immune system to attack the nerves, rather than having a direct toxic effect on them.
It’s complicated and no one knows the answer. I’ve asked my doctors but they can’t give any answers either as to why I am responding like this to the medication. I have taken both Trimethoprim and Doxycycline in the past without issues, but now I can’t tolerate them.
The nerve pain that I first experienced after having the vaccine was getting better over the weeks (before antibiotics), so I wasn’t too worried about it. No doctor has suggested that it should be looked at.
Where do I go from here?
I’m still trying to accept the situation I am in right now. I get panicky sometimes that there is nothing anyone can do to help me, but there are some other options that I am exploring and could be quite helpful. The problem is they are costly and I do not have the money to pay for private urologist appointments, the tests, and the treatments that I need.
Here is what I am looking at trying:
Phage Therapy is a treatment that is around 100 years old but it never caught on in this west due to the discovery of antibiotics. However, in recent years, clinical trials have been popping up in the west and they are enrolling people who have infection that are untreatable by any of the antibiotics we have at the moment. Some of these infections are deadly, so phage therapy was one of the last options they had.
Phages are simply like viruses that infect bacterial cells and use their machinery to create copies of themselves, and thus destroying the bacteria in the process. They are very specific to strains of bacteria, so you need to know exactly what you are trying to treat.
There have been success stories in using phages for bacterial prostatitis. One report here where 3 people were cured from an infection with Enterococcus faecalis, which is particularly difficult to treat. Another report is of a person who was treated with standard phages, and a genetically engineered custom phage and he was able to eradicate all bacteria. To quote part of the paper, the bacteria he was infected with: “Staphylococcal species such as Methicillin resistant Staphylococcus aureus (MRSA) and Staphylococcus haemolyticus, Enterococcus faecalis, and Streptococcus mitis, among others.”. You can see the case report here.
There have been a few articles in recently about success with Phage therapy in the west and about new clinical trials starting.
A story from the Guardian
A story from CNN
And a story from BBC.
ELIAVA Phage Therapy Institute
I’ve contacted this institute to ask some questions. They send phages to people all around the world and have had success in treating patients with chronic bacterial prostatitis when all other treatments failed.
It costs 3900 Euros to go there and have all the tests done and have a much more in-depth analysis of the problem and they are able to tailor the phages to the specific pathogen. But I can also do phage therapy remotely, from home, and possibly with the help of a Urologist, but I will probably have to pay privately for that, too. Remote phage therapy is 1900 Euros. If custom phages need to be engineered, there is an additional cost.
The good thing about phages is that they have no side effects like antibiotics. Treatment is generally longer and more complicated than taking antibiotics, but it is potentially a cure for me.
Prostate Antibiotic Injections
The other option, although this would be one of the last for me, is antibiotic injections directly into the prostate. This has a fairly decent success rate. One guy I spoke to had bacterial prostatitis for 3 years and no antibiotic worked at all. He was cured with a few injections over 2 weeks. He had to travel from the US to Italy to get this treatment, as it’s not conventional and many places don’t do it. It’s done using a needle and ultrasound to guide it into the target organ. Side effects tend to be minimal according to the studies.
“The microbiological cure indexes of 70.5 and 58.8 per cent after 3 and 6 months, respectively, compared favorably with that obtained by oral therapy with antimicrobials that reach effective levels in the prostatic fluid.”
“Conclusion: Our findings show that direct antibiotic injection for chronic prostatitis is a viable addition to standard therapies. Improvements in symptom scores are long lasting. Discomfort is minimal and side effects are rare and avoidable.”
“Complete cure was obtained in 14 patients (56%) after one or two infiltrations. In seven other patients clinical and bacteriologic remission was obtained after several injections but the follow-up period was too short to judge the efficacy of the intraprostatic antibiotic administration. The remaining four patients (16%) had sterile specimen cultures 3 months after one injection, but were lost to further follow-up. The results suggest that local antibiotic treatment of chronic bacterial prostatitis is useful, although careful randomized studies with long follow-up are required to evaluate the merits of the method.”
I don’t yet know if this can be done in the UK, but I know it’s done in the US and Italy. This is something I would have to try if phage therapy did not work.
Raising the money for treatment
I feel terrible asking and I have been reluctant to reach out for help for almost two months now, but this is having a serious impact on my life and I’m not getting anywhere with the NHS. The waiting queues are huge since COVID, and I have no idea how long this will take before I can even see a Urologist on the NHS.
Waiting for the NHS appointments would probably mean I could be like this for a very long time and I simply cannot take this any longer. I appreciate our NHS, but nothing is getting done about this. And I’m not in a typical situation where I can take the antibiotics I need to get me out of pain long term and buy me some time.
I don’t yet know how much this will cost in total
I’m still trying to work out all the details but the costs of all the appointments and treatments is likely to run into the thousands of pounds, and it’s something that I simply do not have right now. This could not come at a worse time as well. Together with the fact I am also struggling just to hold down my job right now as well, it’s making everything 10x more difficult for me.
I really need your support and to help me raise the funds for my treatment, so I can get better.
I’ll update the article or talk more about this later when I have figured out how much I need to raise.
Of course, I will document everything here so you know how I am using the money and my journey in beating this.
I list of the things I need to get done in the short term:
- I need to find a private urologist and go for an initial consultation.
- I need to get an ultrasound done of the prostate to check for any calcifications or any possible reason for infection and look for any reason why a treatment could fail, such as phage therapy or antibiotic injections.
- I need to wait 2-3 weeks off antibiotics to do a test to find out exactly which bacteria is causing the infection so that phages can be used against them.
- Blood tests?
There are probably other things in there and multiple appointments with the urologist that I’ve not factored in.
My friend Ann suggested to my on Facebook the other day that I should try a GoFundMe page and see if I can raise the money that way.
I really didn’t want to do this, but I’m feeling a little hopeless right now and desperate to be healthy again. 🙁
Once I have more details I will set something up. So if you would like to help, I would really appreciate anything you can help support me with through this health problem. I can fix it with your help.
If the phage therapy doesn’t work, then I will speak more about antibiotic injections after I complete the process.
How did I get the infection?
I really do not know the answer to that, but I have some ideas. First of all, I developed a dental infection flare up and required Amoxicillin. That worked fine on the dental infection, but then one day after I finished the antibiotics, I stepped on a rusty nail and decided to have a tetanus shot to be safe. It wasn’t long after this that I started developing the UTI symptoms.
What I believe (and my doctor agreed with me), is that wiping out the good bacteria and then taking the vaccine, may have lead to the opportunistic bacteria to take hold and infect me. The good bacteria normally protect you from this, and it’s not super uncommon to get a UTI after a course of antibiotics. Also, the vaccine response by my immune system the toxoid vaccine may have reduced my immunity to the bacterial infection. Though, there is one study that shows DPT vaccine can unveil latent urinary tract diseases, see study here.
I know for certain it is not an STD. It is likely some normal commensal bacteria that live in the gut. But simple urinalysis studies don’t usually reveal anything in chronic bacterial prostatitis, only acute bacterial prostatitis. Therefore I need other tests to determine the organism.