Charlie Hamilton James: The Disgusting Disease Diaries, Part Two

The Proof blog takes you behind the scenes to tell the stories of what’s glamorous, and what’s definitely not, about being on assignment for National Geographic.

In part two of his story, photographer and documentarian Charlie Hamilton James tells the tale of a picking up not one, but two, rare diseases from his travels on assignment for National Geographic. Yesterday he wrote about his botfly infestation. Today, he continues his tale of contracting leishmaniasis in the Amazon.

The first sign of my leishmaniasis was discovering a very swollen lymph node in my groin. Lymph nodes are usually small raisin-sized lumps, but this one was the size of a very large grape—indeed it got so large that walking became painful. I obviously looked it up on the web and saw that, as well as being a sign of many medical conditions, some very bad, it was also occasionally a sign of leishmaniasis. The lump was on my left side and I noticed a small scab on the top of my left shin. It would make sense that if I had a wound or infection in my left shin that it would affect the lymph node on my left side. I put two-and-two together and went to the doctor.

At first, diagnosis was a problem because the scab wasn’t “presenting” properly. It was dry and crusty—leish tends to be open and festering slightly. The doctors were therefore not too impressed with my self-diagnosis and sent me for all sorts of tests which showed up nothing—leish rarely shows up on blood tests.

But then the scab began to grow. After two weeks it had nearly doubled in size. Two weeks after that it was a couple of inches across and very angry looking. I had also developed another wound on my right shoulder which had started as a small bite that didn’t heal and developed into a round open crater.

Really the only way to test for leishmaniasis is to biopsy the wound and examine the flesh under a microscope—looking for the tiny protozoan that caused it. So the doctors laid me on a bed, got a scalpel and cut a chunk out of my shin. It wasn’t comfortable and despite my eagerness to watch I went all faint and the nurses mocked me—telling me women were much tougher than men. The result came back a few days later confirming the leishmaniasis diagnosis. By that time the wound had become infected and very painful.

The cure for leishmaniasis is problematic. It is classified as a “neglected disease.” This means, in simplistic terms, that because it exists in poor, developing countries that finding a modern cure for it would not be particularly profitable to drug companies. Other neglected diseases like Chagas disease, affect millions of people in South America and boasts the same unfortunate “neglected” status. The cure for my form of “cutaneous leishmaniasis” is therefore pretty antiquated and not at all nice.

It involved a daily course of intravenous medicine for 28 days. Which meant I had to go to the hospital every day, get hooked up to a drip and have 200mls of sodium stibogluconate pumped into me. Sodium stibogluconate comes out of a packet with “poison” written on it, because that’s exactly what it is! It’s very nasty stuff and has pretty severe side effects: tiredness, aching muscles, nausea, rashes, liver and pancreas inflammation—yep I had all of them! It contains a heavy metal called antimony, which is used as a fire retardant and in the production of car batteries.

It did start to work though, and after a few days I noticed the wound on my right arm was starting to shrink a little, even though I struggled to move it. That wound, and the one on my leg were incredibly painful though—walking was difficult, and if I over-exerted myself, my leg would swell up with edema.

Antibiotics didn’t really help, so I was prescribed “rest” with my leg up. So that’s what I did for the whole of December—went to the hospital in the morning and spent the rest of the day with my foot up.

Halfway through the treatment though, my liver and pancreas became inflamed and I was taken off it for a week. I had also come out in a full body rash. I even had a rash on the palms of my hands and the soles of my feet, a reaction to the drug treatment. By Christmas day my shoulders were so stiff that I could barely move them and I needed help getting dressed.

Writing this now, I am starting to feel a bit better. The wound on my shin is still there, but is healing slowly. I dress it daily with gauze infused with medical grade Manuka honey which is brilliant stuff that keeps the wound clean and clear of bacteria. The hole on my shoulder has healed over and now looks like a red birthmark.

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I can’t say I’m leish free, I might not be. There’s no way of telling. The medicine is 95 percent effective but it’s impossible to know if I’m in the 5 percent failure bracket. The protozoan can go into a dormant phase—hiding in the body for years until it decides to break out again, often inside the nose. That’s bad news as it can quickly destroy tissue, leaving permanent disfigurement. It can also appear inside the body on the organs—known as visceral leishmaniasis, which is far more difficult to cure and can results in death if not treated. I’ll stay vigilant!

Leishmaniasis is spread by a tiny biting sandfly—so small it can slip through mosquito nets. But like botflies, leishmaniasis is an occupational hazard in my job. I expect to get them at some point. Both exist in the Amazon and I spend a lot of time there. Prevention is obviously better than cure; so I shall cover up more, and wear long trousers and shirts with sleeves when I return later this year. I’m going back to continue shooting a story for National Geographic magazine on “Manu”—the world’s most bio-diverse National Park.

I am constantly staggered by the brilliance and design of the Amazon’s biodiversity—I’d just rather some of that bio-diversity kept out of my personal space!

Note: The video below shows close-up views of Charlie Hamilton James’ flesh-eating disease, which may be disturbing to some viewers. In a nutshell, it’s totally gross.

Charlie Hamilton James is a British photojournalist and television presenter. He also runs a production company with his wife Philippa Forrester specializing in wildlife films. His work on Britain’s otters was published in National Geographic in February 2013, and he will be working on an upcoming story about vultures for the magazine.