Help me beat this debilitating chronic infection

Hi, my name is Matthew.

Since September, I've been very unwell with an illness that should have been easier to treat under normal circumstances, but it has turned out to be very complicated and I have very few options.

WHAT'S WRONG WITH ME?

I have bacterial prostatitis. This is a urinary tract infection, but a lot more difficult to get rid of than a simple bladder infection.

I'm experiencing all the typical symptoms you would have with a UTI: very Frequent urination, burning, physical pain, and daily flu-like symptoms (fatigue, low-grade fever, etc). Most days I feel quite unwell and this has been going on now for months. It has affected my life severely. :(

The bacteria that appears to be infecting me was identified by culture as Staphylococcus Haemolyticus, known to cause UTI's. I am looking to repeat and do other tests to make sure, but this is the only bacteria that was cultured recently.

WHY AM I ASKING FOR DONATIONS?

Bacterial prostatitis normally responds well to a course of antibiotics. However, I've been unable to tolerate the antibiotics that were given to me: Trimethoprim and Doxycycline. NHS has general guidelines and those are the treatments mainly used for this condition.

When I take both of these antibiotics, my low-grade fever disappears, my pain goes away, and the urinary symptoms get a lot better. I feel a LOT better and respond rapidly to antibiotics.

But the problem is that I experience severe nerve pain throughout my body. All of my skin burns, I get shooting nerve pains, and strong tingling sensations mainly in my hands and feet. If anyone has experienced neuropathy, they can understand how excruciating and debilitating nerve pain is. It's intolerable and I am unable to complete the course, which is between 4-12 weeks of therapy. I've only been able to manage a few days at most before the side effects become too severe. Once I quit the antibiotics, my nerve pain settles down.

This all means that my GP is out of options and they do not know how to treat me. My GP simply said to me on the phone "we can't help you".

I need specialist care to have more options available to me to get rid of this infection. There are other antibiotics and options I could try, but they are expensive and I cannot afford to pay for them myself right now as the infection has also impacted my work and finances hugely.

I need to go private.

WHAT ARE MY OPTIONS?

If I am to have a chance in curing this infection and keep it gone, it might require more than one type of therapy. It's very common for treatments to fail with this sort of infection because most antibiotics do not penetrate the prostate very well.

Therefore, I am looking at my first two treatments as antibiotics from the consultant + phage therapy treatment. These can be used together to prevent resistance and provide a better chance of lasting relief or cure. Injections and surgery are riskier, so I'll leave that for later if needed, and the money I am raising will not cover these.

HOW CAN YOU HELP?

This illness has affected me greatly. I have not been able to function well since September, and I sometimes feel like losing hope. But I am trying to stay strong. I am trying to find a solution. I am told that the waiting lists for NHS treatments are huge, and that could mean waiting 1-2 years to even be seen.

At present, I can barely work, and when I do work, I find it very difficult as it is painful to sit down for more than just a few minutes at a time. I am not making enough money to afford these treatments by myself. I need your help...

These are the medical costs that need to be covered:

- Private urologist appointment(s) (£125-£190)

- Ultrasound and scans of the pelvic and prostate area. (£200-300)

- Bacteriological tests.

- Blood tests.

- Phage therapy treatment plan from home (£1,600). Custom phage (£1200)

- Any additional medical costs, including medications (antibiotics) and/or supplements to help with the condition.

I am not sure of the exact amount of many of these costs, due to some uncertainty regarding how many tests and consultations I will need, however, I've decided on a ballpark figure of £4000, so that I hopefully have enough to adequately cover the phage therapy treatment path in full as well as the private consultations with a urologist at Spire Hospital in Cardiff.

Of course, I will document everything about the treatment(s) and how the money is being used to medically assist me. I will blog about my treatment and how it's progressing (see the link at the bottom).

My blog entry explaning my situation

I appreciate you taking the time to read. Thank you for your support. ❤

INFORMATION ON THE TREATMENTS

Phage Therapy

Phages are specially cultivated viruses that only attack certain strains of bacteria. Phages have been used to treat illness since the 1920's. However, since the discovery of antibiotics, they were abandoned by the West and only recently has there been renewed interest due to the phenomenon of antibiotic resistance. While not standard treatment practice, some people have had their lives saved because of phages:

A story from the Guardian

A story from CNN

A story from BBC

The cost of phage therapy is high, and I cannot afford to meet the costs by myself. I would have the option of treatment from home or travel to the Eliava Phage Therapy centre for treatment.

Phages also come with few to no side effects. While they aren't guaranteed to work or to cure me, I consider phage therapy one of the best options for me.

Antibiotic injections

This is where antibiotics are injected directly into the prostate (bypassing the issues I've experienced taking antibiotics orally). The primary advantage of this method is that the antibiotic agents reach the prostate in far higher concentration and can theoretically have a far greater therapeutic effect. Furthermore, because they are local injections, there can be fewer systemic side effects and the treatment plan is days, not months long.

Unfortunately, the UK does not offer this mode of treatment as standard. If I were to go for this option, I would have to travel out of my country to get treated. The places that offer this mode of treatment are Italy, Georgia, and two parts of the US (Florida and California).

Surgery

In extreme cases, the prostate organ can be surgically removed. There are several surgical options, with the most expensive also being the most precise (less chance of nerve damage), leaving only a small scar. In this option, surgery is done robotically. However, surgery is by far the costliest path and surgery is not my focus at the moment. It's also one that I would like to avoid having to do. But right now I feel prepared to do almost anything to get my life back.