Parasite Treatment with Ambisome

May 25, 2011 – June 14, 2011

In order to treat my Leishmaniasis Brazilienses parasite, I had to begin a 21 day, daily, infusion of a toxic anti-protozoal anti-fungal medicine called Ambisome. The day after I got the official results from the CDC I went in to the hospital to get a PICC line inserted into my arm so I could get the medicine pumped into my body and rapidly diffused by my heart. I didn’t know that the process would be so involving: I had to get surgery to put the PICC line in! I was quite surprised when I went into the hospital and they told me to take off all my clothes and put on the patient’s gown. A nurse came in and spent an hour sterilizing the room and her operating area, then began sliding a purple tube through my veins. It reminded me of trying to guide a bent hanger wire through a crack in the window to get the keys off of the front seat. She checked her progress with an ultrasound. Her ultimate goal was to snake the tube into the opening of my heart, so that when I am injected with the toxic chemical, it goes through the heart and immediately disperses throughout the body and does not spend time concentrated in any one area. She once took the wrong fork in the crossroads between going down to the ventricle and up into the jugular. She gave me Novocane but the pressure still hurt. My arm had also been bent flat for three hours without moving, and then I felt the bizarre sensation of pressure inside my veins. It is not pain, but uncomfortable awareness. A chest X-ray verified the PICC line was placed in the right spot. A game of Frisbee ten days later kinked the line and it had to be pulled out anyway. In the interim the PICC line had really limited my activity, and I could feel the pressure of the extra wiring with each heartbeat.

To receive the medicine I went to the Ambulatory Infusion Center. Each day I would check in as a patient, take the drugs, and head home. The treatment took 4 hours every day, starting with an injection of Benadryl to prevent any allergic reaction to the toxins and that would put me out. Then they would rinse the PICC line with a saline solution and pump in another liter to hydrate me. After I hydrated, they pumped in the Ambisome over a period of two hours to not overload my system. We got it down to 3 hours total by the end, pumping the Ambizome faster, but some days I needed a potassium or calcium supplement and it would take longer. After the random Frisbee game it took us 5 hours to figure out the PICC line was kinked, so they had to remove it and give me an IV injection every day. The nurses were great and I got a lot of reading, computer work, naps, and watched a few movies while getting a toxic anti-protozoal drug sent through me. I couldn’t drink alcohol at all since my creatinin levels, which measure remnants of what your kidneys don’t filter, tripled. I could have permanent kidney damage.

Within 5 days the swelling of my baseball-sized face decreased dramatically. Even better, my throat had pretty much healed already! And having the treatments made me feel progress. Life was moving again and it wasn’t all about Leishlie. Shalynn came with me for the first week of treatment, but soon I was using bringing my own Benadryl so I could stay awake and get some things done. By the end of the treatment I rode my bike to the hospital. Other than my kidneys testing poorly, I was not affected by the side effects.

Since the parasite was on the retreat, I started covering the wound again. The thick, black scab sloughed off. I began a wound care treatment that involved an ultrasonic misting; the agitating frequencies stimulated blood flow, thereby bringing in nutrients and fresh immunological aid to the lesion. The three weeks of the treatment drudged on, but with earlier appointments I had the whole afternoon and evening to celebrate a rejuvenated passion for life. I had finally beaten Leishlie! I could get on with my life!

 

Leishmaniasis: an unpleasant guest. Development of a parasite (and all those gross pictures you’ve been waiting for).

May, 2011

Leishmaniasis is a flesh-eating parasite common in tropical areas all around the world. It is a protozoa that lives within sand flies, which are one-third of the size of mosquitoes and very hard to trace. The protozoa enters the skin when a sand fly carrying the parasite bites a warm-blooded animal. The white blood cells attack the foreign body but then are not defeated. Within the white blood cells the protozoa propagate, rendering the body’s basic defensive mechanisms useless. With the local immune system inoperative, the body fails to recognize the immunological needs of the infected area. As dead skin and dead white blood cells evacuate the area until the irritation ruptures the skin so the excess can escape outside of the body. The death of skin cells continue, but is not replaced by new, healthy skin since the body’s detection of the infliction is impaired by the deactivation of white blood cells, and so the wound increases in size, oozing.

This of course is only the friendliest, cutaneous, form of Leshmaniasis. Sometimes Cutaneous Leishmaniasis simply goes away on its own; in fact in the Middle East the parasite is so common and mild they are diagnosed as “Israeli Buttons” and doctors assure the infection will go away on its own. The next step in severity of the parasite is the muco-cutaneous variety. After the infectious inception via the sand fly’s bite upon the skin, the free trip through the blood stream (riding the dead white blood cells) brings the protozoa to sinuses. Leisions can form within the nostrils, the mouth, or even further up inside the SINUS SPACE. Finally, along these lines comes the Visceral Leishmaniasis, which are variations of the parasite that moves on to infect the lungs, bone marrow, muscles, and other organs. This deadly variety is most common in Africa is a painful, slow death.

Although most people have never heard of Leishmaniasis, it is a common affliction – limited to the tropics. The parasite has abundant opportunities to propagate with the aid of sand flies, and is difficult to prevent and detect. It is not surprising that worldwide about 2 to 3 million people become infected by Leishmaniasis each year. I think the lack of global awareness to this epidemic is easily attributed to the fact that most of the people who are affected live in rural regions of poor countries: the Amazonas, the Dark Continent, the jungles of Southeast Asia. Indigenous peoples all over the jungle live with it; in most cases it might go away, in many cases the wound continues to grow and the parasite spreads until a secondary infection takes the host. Some people live with it for years. In Peru we learned that the indigenous people apply a hot poultice of herbs. As the parasite actually prefers mammals with a lower bodily temperature than we have as humans, this “heat it out” technique has been adapted by Western medicine as well.

But of course for those of us fortunate to be graced with the blessings of our industrial military investments, there is an expensive, chemically divined, prescription drug company cure. When American soldiers started getting the parasite fighting in Korea and Vietnam, the military research came up with Pentostam to get their Joes back on their feet. Still today, most of the 50-100 Americans infected with Leishmaniasis each year get it in Afghanistan and Iraq. Since, however, this occurrence is such a low volume, the FDA has not officially approved the medication to treat the parasite, and so I found out that I had to use experimental medicine to cure my case of Leishmaniasis.

But first I had to prove to the Center for Disease Control that I did in fact have Leishmaniasis. They don’t just hand that shit out, so to speak. Even though my lab results lead to the diagnosis, I had to get another biopsy. The CDC would grow this sample large enough so they could determine which specific species it was, and then to test its resiliency to any medication. For the third time, I had a scalpel put to the increasingly larger wound on my cheek.

What was worse, much worse, was my doctor’s concern for my scratchy throat. I initially thought I had caught a cold from Shalynn. As my throat worsened, I thought I had strep throat due to my compromised immune system. My doctor was worried the Leishmaniasis had spread to my throat, so he recommended me to an Ear, Nose and Throat specialist to collect a sample. The Olyarntologist did the normal sick throat routine with a tongue depressor, I opened wide and said “awwwww,” but then he snapped my head back and choked me with a numbing agent called “Hurricane Spray.” He lit my digestive system on fire! As I coughed, burned, and drooled a horribly bitter taste all over myself, hoping I didn’t drown in my lack of throat control, the doctor proceeded to take long tweezers and tug until chunks of my infected throat ripped off.

Now the waiting began. We sent off samples of my cheek and my throat to the CDC and would simply have to wait for their designation. My Infectious Disease Doctor said it would take two weeks, but I wasn’t going to die, so to be patient. I slept in late, looked for jobs, and returned the sympathy always washing over me from friends of room-mates with a dutifully ashamed and morose response. I just wanted to ignore it and pay my time. But with a large, ugly, oozing, scabbed infection on your face, it is hard for others not to notice, and then to not say anything or not act concerned or be considerate of the problem or be curious. It was an interesting adversity because I knew people wanted to ask and I was comfortable letting them indulge in that itching curiosity as well as to let them fulfill their need to tell me they felt bad for me and to wish me a good recovery. But then several people seemed to only be politely interested in that, receive my gracious “yeah it’s tough, but it doesn’t hurt that bad, my throat is the worst part – I have to spray my throat numb to eat or talk or laugh… the smell gets me, yeah I have to deal with this…” and it would repeatedly put me in a very negative self-evaluation. But if they didn’t say anything then I would be bothered, knowing that they wanted to ask but didn’t respect my confidence enough to ask or something. I became depressed. A little bit in spurts, but it was a consuming affliction of energy and doubt and worry and what if and what is the scar going to be like and when can I start treatment. Have you ever been to a job interview with a pimple on your nose and felt embarrassed? Try it with a cherry-sized festering wound!

Two weeks turned into three weeks. I went running a few times but had to stop because the sagging motion of my swollen cheek would make my face hurt. I played soccer with a friend and a chest trap went bad and bounced too high and hit me dead on the wound. The scab flopped off and was hanging by an oozing tether. I tried to make fun of myself, sarcastically played the “sorry guys, I can’t go swimming because I have leishmaniasis,” or “yeah I know what you mean because I have leishmaniasis.” In the shower, shielding the wound from the streams of water, I would sing Phantom of the Opera nonstop (“This face, which earned a mother’s fear and loathing. A mask – my first unfeeling scrap of glory. Pity comes to late, turn around and face your fate; an eternity of this before your eyes.”)

Despite these distractions, the parasite worked me. It continued to grow throughout May as I waited for the CDC. I would startle myself with my own reflection, get drawn in to staring at the volcanic texture of the scab. I slept in more, rationalizing that I needed my strength, and couldn’t focus to get anything done. I was killing time, hoping that each week I’d be able to start a draining treatment that would damage my liver and threaten my heart. I told my doctor about a new symptom – he delicately told me that impotence should not be a side-effect of Leishmaniasis. I was depressed. I looked in the mirror and saw a wound of a half of a softball on my face. I despaired that my dreams of hosting a travel show about volunteering, about getting married, about surviving, were all ruined.

I couldn’t have been more wrong about those fears. Throughout this whole process, Shalynn had proven to be an even more amazing woman than I could have dreamed. She cheered me up, encouraged me to be active, joked with me about how awful things had gotten, and compassionately consoled my insecurities. She was an amazing inspiration of strength. Sure, we weren’t going to get married this summer, but the bonding that we shared in sickness, and the meek acceptance of my dependence on her, drew us together stronger than any of the challenges our relationship had already overcome.

At the end of May the CDC finally got back to us. They figured out that I have Leishmaniasis Braziliensis and that it is not resistant to any medication. One option was Pentostam, which causes heart and liver problems, and another option was Ambizome, which damages kidneys. Finally! I could progress to destroying my kidneys!

Leishmaniasis: Inception

A winter in the jungle leading to a fateful January 8, 2011

After struggling with an open wound on my face for nearly three months, I found out that I had a flesh-eating parasite called Leishmaniasis. I had visited several doctors, contemplated empty theories, had chunks ripped off of my face in biopsies, and in the face of the growing realization of the situation I was in, I was actually relieved to learn I had Leishmaniasis. At least I knew what I had. I knew what I needed to do. I had known about Leishmaniasis and should not have denied the idea when the Bolivian doctor said she thought it could have been Leishmaniasis. While we were living in the jungle I knew to avoid the river banks and getting bitten by the sand flies because they can carry Leishmaniasis. I had even seen Leishmaniasis on one of the workers at the lodge; our friend Ruben had a wound on his leg and Shalynn – being the most medically adept with experience working in a veterinary clinic – gave Ruben his daily, twenty minute injections to heal his Leishmaniasis.

With all this thinking about Leishmaniasis, I finally figured out how I got Leishmaniasis: I jinxed myself.

Shalynn and I went on this trip through South America primarily as a volunteer expedition. I had just graduated with a desire to make documentaries, and so I wanted to help people tell their stories of how they were fighting to make the world a better place. Shay had just graduated with a degree in Zoology and wanted to become one of the people fighting to make the world a better place. She choose a volunteer position in the Peruvian Amazon in the Manu Biosphere – world renown for its pristine, primary rain forest and its high biodiversity. While there I was filming and photographing the lodge, the animals, the environment. I produced media to promote the work of the lodge, the Manu Wildlife Center, and their mission: by bringing in tourists they were to buy land and protect it against the logging and gold mining that are destroying the Amazon and leeching thousands of tons of mercury into the rivers.

My time in Manu was the most exciting period of my life. I had always dreamed about being a wildlife cinematographer. Growing up watching Steve Irwin, Animal Planet, and then the Planet Earth Series, I felt my true calling was to explore the natural world with a lens. In Manu, right after Shalynn and I got engaged at Machu Picchu, I found myself living in the most beautiful place in the world with my only prerogative to film animals. Beyond this amazing situation, the lodge was hosting a film crew from National Geographic. Working on the upcoming NatGeo show “Wild Americas,” world-class wildlife photographer Alistair MacEwan was filming Black Spider Monkeys and Brazilian Tapir. I stumbled over myself in offering help to carry gear, and within a week I was helping Alistair set up his camera and wade through the mud to put up the infrared lights in the trees. Some of his gear broke down, too, so I ended up hiking back to the lodge every morning to correspond with his producers while he filmed the spider monkeys during the day and then hiked out with dinner to help set up for the night shoots and stay awake to watch for wildlife. It was the most exhilarating experience of my life! We ended up getting a couple of great shots of tapir entering the clay lick.

His wildlife guide Marlene (Mar-lay-nay) gave me tips to filming some smaller animals. One trick is to set a sort of “pee trap,” in which you pee on the mud by the river that’s exposed to direct sunlight. The heat evaporates the moisture and the remaining salts and nutrients of the urine attract butterflies. Salt is hard to get in the jungle so far away from the oceans, so many animals eat mud and sweat to get sodium.

It took me a while to actually set up such a simple trap. Mostly I was just distracted by hikes and seeing animals. After staying at Manu Wildlife Center for 6 weeks, we moved on to another wildlife lodge operated by InkaNatura: Sandoval Lake Lodge. I got some shots of the lake’s resident Giant River Otters, took some clips of the lodge, rooms, trails and food, and then moved on to another lodge to make a promotional video about that one as well. The Heath River Wildlife Center is on the Bolivian side of the river that divides Bolivia and Peru. On the Peruvian side of the river is a large clay lick for Red-and-green Macaws. When coming back from a morning on a floating blind to film these birds, I set a “pee trap” on the shore at the lodge.

I finally decided to set this trap because we would leave the jungle in two days. In two days I would regret not having done this simple trick to see a bunch of butterflies, so after our group disembarked from the boat I hung back by the shore. After they left I let loose, then went to shower. I came back twenty minutes later to check the trap – there were swarms of neon yellow, bright orange, and phosphorescent green butterflies! I ran back to get my camera and lied down on my stomach to get some shots level with the butterflies. I set my tripod as low as I could to get videos of them flurrying around. I had Shalynn drop a rock nearby the thickest concentration so I could get shots of hundreds of wings scattering together up into the blue sky, above the brown river and the green plants. This was the shot, I thought, that could end a highlight video about the abundance of beauty in this region.

I spent about ten minutes photographing this urine-induced salt frenzy. Since I had just gotten out of the shower, I was only wearing a T-shirt and soccer shorts. As I focused on focusing, as I was distracted by the dozens of butterflies, I ignored the bites I felt on my legs. With the camera rolling on my tripod I rubbed my legs free of bugs, but while taking photos I just let them bite to get the shot. Each shot looked better, so each time that I thought “well this will be the last one and then I’ll get out of here,” I was excited by the results to take another photo, and another. I brushed off my legs. Some flies were on my hands and arms. I took more photos.

Shay admonished me for my carelessness; my legs looked like they had chicken pox from the sandfly bites. I agreed that it was dumb, but decreed, enthusiastically, sarcastically, confidently, stupidly, ignorantly, and the words I wished I’d eaten before it ate me”
“Well I hope I don’t get Leishmaniasis!”

We never noticed the small bite on my cheek.

Medical Mud on the Tracks: Finding a Nickname for a Flesh-Eating Parasite

April, 2011

By the time I got home to Oregon it was obvious that the injections I got in Bolivia were not winning the battle. I met with my travel doctor and brought the drugs I got from Bolivia: the bactrum pills I got at a pharmacy and the 4derm ointment and prescriptions for the injection from the doctor in La Paz. He described the injection as “a shotgun method anti-bacteria and anti-fungal.” He didn’t seem too concerned about the wound on my cheek and assured me he’d figure it out soon. At this time it was the size of a quarter with a crater in the middle and crusty, orange rim. My doctor simply took a swab of the viscous middle and said he’d wait a week for a sample to grow from the culture. He gave me a prescription for penicillin – which I was surprised, is still the best basic anti-biotic – and sent me home to wait. I continued visiting friends, looking for work, settling back in to life in the USA.

A week later I called my doctor but he said the culture hadn’t grown anything yet. After a few more days I called again – no culture. My doctor wasn’t too worried, certainly not animated, so I tried to play it cool as well as to stubbornly contrast Shalynn’s growing impatience and my family’s general over-concern. His best guess was that it was MRSA – a highly contagious skin bacteria that spreads on contact. It can be a nasty infection, some cases of which can only be cured by extricating the infected area.

When I called at the beginning of the next week and my doctor still had no results I urged him to take the next step and try a biopsy. Shalynn had grown more and more impatient with his apparent lack of concern and the fact that I had to call his office for each bit of news. She wanted me to see a specialist, but I was confident my doctor could figure it out if given a bit more time, but prodded him into going for the biopsy. The culture, he had said, would only reveal an organism if it was a fungus or bacteria. Since nothing grew, it must be something else, something only diagnosable under microscopic scrutiny. He was reluctant to cut into my skin but the wound was getting worse and he agreed that would be the next step.

A biopsy is a simple procedure: he rubbed around the wound with an alcohol swab, stuck in a local injection of Novocane, then sliced a 3mm chunk from the topmost and furthest back corner of the wound. My mom came for support; watching her saddened face grimace was the hardest part of the procedure. The biopsy is daunting to think about and is painful, but quick.

Wrapped in a pressure bandage to stop the bleeding, I went off with hopes of finally discovering what was causing the wound. My doctor sent off the sample of my flesh to a local lab and expected to find out within a week. In the meantime he came back to me with guesses as to what kind of infection I had.

“Did you come into a lot of contact with wool? Because I think it might be cutaneous anthrax that lives in sheep’s wool.”

“Well the scuzzy hostel I stayed in the night before the pimple popped up had alpaca blankets that felt like they hadn’t been washed in years. I might have anthrax.”

As I contemplated nicknames for the infection, another week passed and I didn’t hear a word from my doctor. Shalynn was now mad at me for not going to a specialist, and she was disgusted by my doctor. I called his office daily and didn’t get an answer for a few days, until a nurse called me to ask where I wanted to fill my prescription of Ciprofloxin.

“What do you mean? I haven’t heard anything about a new prescription. Did they get a positive identification?”

“Oh you haven’t heard? Let me read your charts here… Yeah it says here you have a staph infection.”

“Oh, ok. So the Ciprofloxin will heal the whole thing?”

“I guess so.”

At this point I was really disappointed in my doctor. I couldn’t get a hold of him that day so I left angry sentiments with his receptionist and “Staphanie” and I went to the pharmacy to get our Ciprofloxin. My doctor called me the next day, tail between his legs, defeated. He apologized for the lack of communication. I asked him about the staph infection and the timeline and how it would heal and what the scar would be like – he didn’t know if it was a staph infection.

“Adam, you should see a specialist. I’m sorry, but I don’t think I can help you anymore.”

I lost over three weeks of ground in the battle. Now the wound was crusted over like the cheesy roof of a casserole and was the size of a decent forkful. I found a dermatologist and she happened to be Argentinian. She had a French name so I completely lucked out on that random fortune; her knowledge of the region’s micro-parasites made her take my affliction much more seriously. As soon as she saw me she was deeply concerned, took another biopsy, and had the sample tested for specific, difficult-to-detect micro-organisms.

A day later I got the call: “Adam, you have a protozoal parasite called leishmaniasis. It is difficult to cure, but I’ve set you up with an appointment at the Infectious Disease Clinic for tomorrow, and they’ll be able to hopefully get you taken care of really soon.”

“Oh Leishmaniasis! Wow. Ok. Well that explains it.” It appeared that “Leishlie” and I had a long road to travel.

Our Inglorious Return from the Trip of a Lifetime

March 15-25, 2011

We finished our trip in Chile, contemplating how fast time had gone by and how many amazing things we had seen in six months. Chile is incredibly developed compared to Bolivia; what really made me appreciate the difference between the infrastructure of Chile and the flims-frastructure of Bolivia was the realization in the bathroom on our first Chilean bus that I had missed the scent of chemical cleaning products.

In Chile we visited Bernardita, Shalynn’s sponsored child through Children International. We saw Pablo Neruda’s house and a few soccer games. We were anxious and ready to get home and to resume our normal lives again, to rest, and to share our wonderful stories and experiences. When we got back, however, all that people could hear us say is that we were robbed and then they’d interrupt to ask what happened to my face. My sister and brother-in-law picked us up from the airport. As we walked up to them at the luggage return, wearing our alpaca sweaters, the worn jeans that had been our daily pair for the journey, and me with a large hat and a large bandage on my face, Kyle turned to Shalynn and said, “Well its good we recognize you because he looks like a crazy man!”

 

As we visited family members to catch up and to show our photos and share our adventures, we encountered the normal apathy we were used to when coming back from a trip. No matter how long you leave for a trip, someone will ask you how it was, and you respond, “Great!” Then you have one sentence to sum it up before the topic changes to a TV show somebody recently watched. We were used to this from previous trips, but the only thing people would initiate or ask to hear about were the robbery and the infection. It seemed it was easier to give sympathy than excitement.

My family is not discreet, so I heard from everyone what everybody else thought about my infected state. One aunt asked me if it had any mental effects from the wound and asked why I had been acting weird. My aunt said my mom said I was goofier than usual, my mom said my aunt was worried about me… No matter if I smiled, laughed, winked or whatever, the only thing they saw about my face was this infection. In the end they were rightly concerned. I kept reassuring everybody that I would have it looked at again as soon as I got settled, and in the end I think their interest encouraged me to approach the infliction more seriously.