How I defied the doctors' prognosis and found treatment for an 'incurable' superbug

|
Thursday, September 20, 2018
how i defied the doctors
Pranav Johri

I was only 33, and my doctor had asked me to learn to live with the debilitating pain in my pelvic region and constant low-grade fever. There were two options before me – listen to him or find my own treatment.

I chose the second option.
 
 All I knew was I had a stubborn infection in my prostate which refused to respond to the five very potent antibiotics. 

It started as a dull pain in my pelvic region. I thought it was a muscular stiffness and would get okay during my upcoming trekking trip into the Himalayas. But during the trip, I found I was feeling unusually exhausted.

When I came back to Delhi and realized that I was having to wear a sweat-shirt in 45 degree C heat due to growing weakness and a sensitivity to cold, I knew there was something wrong and it was time to consult a doctor. My doctor diagnosed it as Prostatitis, an infection in the prostate and prescribed me an antibiotic. He did it without any culture and sensitivity test, and I was not convinced of his diagnosis, and his prescription. I decided to seek a second opinion.

The second doctor confirmed his diagnosis and prescribed 2 antibiotics, Azithromycin, and Doxycycline for 10 days. Though he, too, did it without any detailed testing, I decided to go ahead with the treatment. The ten-day course of two potent antibiotics didn't relieve any of the symptoms. During this time, I developed a low-grade fever. On my second visit to my doctor after finishing the initial antibiotics course, he changed the antibiotic to Ofloxacin, which I had to take for 4 weeks.

My digestive system went for a toss because of the heavy dose of antibiotics. I was too tired to carry out my routine work; a nap in the afternoon became essential. I hired an assistant for my work, as I couldn't regularly attend office.

The whole attitude that doctors had towards my problem was just not convincing. Why wouldn't they go for some more detailed testing to confirm the exact organism causing the infection

The whole attitude that doctors had towards my problem was just not convincing. Why wouldn't they go for some more detailed testing to confirm the exact organism causing the infection? I was becoming irritable and angry. The side-effects of antibiotics were getting worse and so, I decided to meet yet another doctor.

Meanwhile, I started some research online about my condition. The first search I did was on the diagnostic tests one should undergo in case of prostatitis. One research paper wrote about the prostate fluid test. On my second visit to my new doctor, I asked about the test but he too was not very keen on conducting that test. Rather, he changed my antibiotics to Ciprofloxacin and Amikacin. 

I was confused and my condition was worsening. My need to find out the exact bacteria was growing by the day and I wanted an exact answer. Through a friend’s reference, I met a doctor who agreed to conduct a prostate fluid test. The test results found Staphylococcus haemolyticus and Enterococcus faecalis. Enterococcus faecalis is one of the 12 priority pathogens in the WHO's list released in 2017. He told me that I had a superbug infection, which was resistant to many available antibiotics.

I was shocked to see the report. I was never admitted to any hospital, so how did I have an antibiotic-resistant infection? The doctor suggested that my wife should also undergo tests to rule out the presence of these life-threatening bacteria in her body and thankfully, she tested negative. 

My doctor told me that it would be difficult to treat this infection as the bacteria were resistant to antibiotics. But he assured me that the chances of infection spreading to the other parts of the body were minimum. The prostate gland is enclosed inside a membrane and disconnected from the rest of the body. In fact, that was one of the main reasons why antibiotics could not penetrate the prostate gland and eliminate the bacteria inside.

The doctor told me that that I may have to live with the condition, manage my symptoms, and bear the pain for life. I was only 33 then, how could I live the rest of my life feeling sick all the time?

I had a growing sense of anger within me. Why did such a disease with no cure happen to me?

Medical science has taken such great leaps forward in some fields – we all know of medical marvels, a possible cure for cancer, advancements in surgeries etc. And here I had a tiny but untreatable bacterial infection in my body. How could that be possible? I had many such questions in my mind to which there were no answers.

I took matters in my own hands and began my research to find a cure for my problem. In the process, I found a number of credible medical journals from where I gathered a lot of reliable information.

I came across Bacteriophage therapy in one research paper published by the National Institutes of Health, USA. They wrote that bacteriophages are friendly viruses that feed on bacteria. It was an age-old therapy in some eastern European countries

I came across Bacteriophage therapy in one research paper published by the National Institutes of Health, USA. They wrote that bacteriophages are friendly viruses that feed on bacteria. It was an age-old therapy in some eastern European countries.

I contacted doctors in the US to know about the treatment. They told me that bacteriophages are a popular modality of treatment in the former Soviet Union, but the treatment is not approved by the US FDA. I got a similar response from the Pasteur Institute of Paris. In fact, a French scientist from this institute was the discoverer of bacteriophages and was involved in the development of bacteriophage therapy in the early 1900s in the country of Georgia.

I read about the treatment in many prestigious medical journals, read about how it was developed by two scientists in Georgia almost a century back, and how it could be the only solution to the growing problem of antibiotic resistance.

These findings gave me a glimmer of hope. Maybe I could find a cure for my untreatable infection that had crippled me by now.

Next, I contacted doctors at an institute of phage therapy in Georgia. They asked me to send my reports and visit their centre in Georgia for the treatment. I had never been in a situation like this. Traveling to another country for treatment was a little scary. I didn't know the language, I didn't know anybody there.

But as there was no alternative, I decided to travel to Tbilisi, the capital city of Georgia in November 2016 with my wife. They conducted three tests — cultures of the prostate fluid, semen and blood sample. Five days later, they confirmed the presence of four bacteria in my prostate – Staphylococcus haemolyticus, Staphylococcus aureus, Streptococcus mitis and Enterococcus faecalis. Out of these four, two were highly resistant to available antibiotics. So, as it turned out I had not one, but two superbugs!

Their standard phage preparations were sensitive against three of these four bacteria. They administered the medicine in three different ways — orally, rectally and in the urethra.

On the fourth day of the therapy, my fever disappeared. The pain in my pelvis, groin, and flank eased a bit in the next three weeks that I stayed there. I came back with medicine for the next two-and-a-half months. 

When I went back after completing the course, two bacteria were eliminated and the third one — Enterococcus faecalis – was reduced considerably. But the Streptococcus mitis continued to show resistance to the standard phage preparations. So, the institute had to make a customized phage preparation for it, which would take two months to prepare. In the meanwhile, they asked me to continue my treatment with the standard phage cocktails for another three weeks to get rid of the remaining Enterococcus faecalis.

By the end of these three weeks, I had started feeling almost normal. My sensitivity to cold vanished. My fever disappeared. Symptoms like frequent urination and exhaustion were resolved. The pelvic pain was not that troublesome anymore.

In November 2017, I underwent the final course of treatment with the custom phage to eradicate the Streptococcus mitis, the fourth and final bacteria in my prostate. In May this year, I repeated all the tests and was thrilled to find that there was no trace of bacteria in my prostate fluid. The superbugs had been successfully defeated.

 

(Pranav Johri is partner, Rajpal & Sons, a leading publishing house. Now he also runs vitalisphagetherapy.com, a website to spread awareness about phage therapy and antibiotic resistance. Views expressed are personal.)
 

Comment

Thank you, Pranav.I've heard your talk recently at Gangagen.It is highly motivating to hear very encouraging words about phage therapy and hope fully in India,it will popularise in the near future.I am happy that you are cured completely. Good luck.

madhavi    2018/09/20 06:24:28

Thank you for sharing your experience. Many would find it very encouraging.

Rajesh Kumar Singhal    2018/09/18 04:52:47

Thanks for an informative and insightful article, Pranav. Your strong sense of self belief and refusal to give up helped you come out of this dreadful nightmare. I am sure this post will help motivate lot of people experiencing such situations and who have lost all the hope. Stay healthy and strong

Archana    2018/09/13 12:05:48

Thank you Pranav and Healthpost for sharing this experience. Many times we just go along with the system just because it is comfortable or familiar for us, not because it is actually curing us. It takes courage to take matters of health in your own hands. Kudos to you for this and god bless.

Anita    2018/09/12 01:18:33

How I defied the doctors' prognosis and found treatment for an 'incurable' superbug

Doctors in India told me I had only one choice - learn to live with it. But I decided to fight back ....

It is time to re-evaluate the National Family Planning Program: Poonam Muttreja

Poonam Muttreja, executive director, Population Foundation of India talks about why India's family planning program has not produced the desired results....

A device to track your ovulation cycle at home

Inito Fertility Monitor is a smartphone- connected device that helps you identify up to 6 fertile days of your cycle....

Diabetes, heart disease and stroke may co-occur

Researchers say that diabetes, heart disease, and stroke may progress from one to another sequentially through the life course. That means there is ....

InnoHEALTH 2018 is the third annual conference being organized in New Delhi, India. The mission is to bring the top healthcare experts around the world with ...