
Back at the beginning of March when Ashe and I were in Panama city, scrapping around looking for boats we noticed that we had some particularly nasty looking bug bites that were forming small red welts on her legs and on my back and elbow. This was nothing new, after living in the rain forests on various islands in the Bocas del Toro archipelago we had experienced all sorts of biting beasties from swarms of chitre to hairy malarial mosquitos and possibly even the blood sucking assassin bugs which live in thatched roofed huts and come out at night to feast on your flesh and inoculate you with Chagas disease. These things have never phased me very much; when living in these places we are constantly surrounded by people who’ve been there their whole lives and survived to be more non-chalant about biting insects as I am. Sure, when the chitre were making meals of us on Shepard’s Island we used DEET ocaisionally but for the most part it was natural bug repellents like coconut oil with citronella.
After a couple of weeks with these weird little bites not healing we decided that we decided that a sketchy hostel we stayed at in Panama City probably had bed bugs and we spent an entire day at Hacienda Merida on Isla Ometepe in Nicaragua cleaning out our bags, doing all of our laundry and dissinfecting everything we owned in order to expell any hitchhiking insects and their eggs from our gear. So we thought we had the problem licked and after reading that bedbug bites could take months to heal we sat back, tried to ignore them and wait for them to heal. Over the next few weeks they just got angrier though, not much but enough to make us worried and when we got back to Boston in April we asked my sister about it who has had bedbugs before at her ghetto apartment in Allston and she looked at them and quickly said “Those thing are NOT bedbug bites…” so we popped on the internet and had our worst fears confirmed: our bites were looking more and more like Leishmaniasis.
For those unfamiliar with this fabulous parasite (basically everyone) it is an intra-cellular parasite that is transmitted by sand flies or “no see ems” in many different parts of the world including southern Central America, much of South America, the Middle East and southern central Asia. We are fortunate to have the cutaneous version of the disease which only causes large, open, weeping sores which don’t heal and leave fabulous scars rather than the visceral version which just causes organ failure and death. All things considered it still hasn’t been much fun dealing with a relatively uncommon tropical disease in Boston where nobody seems to know what to do about it. After being seen by an infectious disease clinic we were shuffled off to a dermatologist who took biopsies (which only made the buggers angrier) and confirmed within a couple of weeks that we certainly did have Leishmaniasis. Then we were in the hands of the infectious disease unit at Beth Israel who were apparently emailing back and forth with the CDC and a slew of specialists trying to figure out how to treat our crazy lesions. In the meantime our sores got worse and worse, Ashe’s legs were covered with twenty large ones which started melding together into disgusting weepy piles of scabby goo as they got bigger. All through this process we were undoubtedly doing at least as much research as the ID team and coming up with very little promising information. Considering that this is a parasite that affects two million people a year there has been very little definitive research done on treatment, especially long term efficacy of the treatments currently available. My impression is that Leishmaniasis research suffers from the same problems as Malaria research, there is no money in curing a disease which primarily affects poor people in developing countries.
Our doctors here have been pretty excited to see this stuff up close, apparently their only other exposure too it has been some five minute blurb in medical school. Only about 100 Americans a year get Leishmaniasis outside the military which has seen about 700 cases since the invasion of Iraq; soldiers there call Leish the “Bagdhad Boil”. Those lucky folks are getting Old World Leishmaniasis however which is a bit easier to treat than the New World variety which we contracted in Panama. One of the major problems according to our doctors is that some New World varieties can relapse in mucus membranes up to 20 years after the original infection has healed. I will spare you direct links to pictures of this fabulous manifestation of our parasitic friends, just google “mucotaneous leishmaniasis” if you’re brave and curious.
Before going the traditional route we tried a number of herbal remedies and of course found plenty of speculation about their use and effectiveness. We tried Pau d’ Arco, goldenseal, neem oil, garlic extract, propolis. None of them were effective in the least and I almost think that messing with the sores so much only made them worse. Our research into alternative remedies was difficult not only because of the speculative and spotty information about naturopathic medicine but also, many of the studies that we were looking at with regard to treatment with natural materials were part of research work by drug companies and they didn’t disclose the actual ingredients they were using.
After trying for a number of weeks to get a new oral treatment called Miltefosine from friends and aquaintances in Latin American countries, we gave up. This drug is much safer than the other current intraveinous treatments but it’s effectiveness is still in doubt, it lacks FDA approval and is only available in the US at great cost. So on Wedenesday when our ID doctors found out that the strain we have has the possibility for relapse they recommended that we get admitted to the hospital for five days to receive daily intraveinous infusions of an anti fungal treatment that looks way too much like anti freeze dripping into our veins. This is preferable to the other treatment which is a heavy metal infusion for 28 days and causes all sorts of fun side effects including liver and heart damage. Being treated for five days and two follow ups with something less invasive is better for sure, especially since we were looking at the possibility of postponing our trip to Madagascar in June to work with the Ankizy Fund.
Plenty of people have suggested that I might want to be more cautious about where I travel in the future and having seasoned travel doctors gasp when you show them your skin certainly makes me think twice about insect exposure but not about travelling to places where these diseases are endemic. We have access to all sorts of medical care and economic support but the vast majority of people who contract these things are on their own. While we were living in Bocas del Toro we heard plenty of ex-pats talking about Leish, some who had even gotten it and been treated. In Panama you can buy a series of shots at the drug store rather than sitting in a hospital room for five days. It didn’t seem like quite such a big deal until we got back here and became the darlings of Boston travel medicine.
So, while I wait for Sunday to roll around I’m stuck here in a ward full of people who are far more sick than I am. We are not allowed off the floor and I’m feeling more than a little lethargic, wishing they had a gym or at least an operable window. Parades of medical students, reisdents and case managers come to our rooms to gawk at our skin and ask the same questions over and over again. Overall I’ve been really impressed with the quality of care but I still can’t figure out how keeping people locked in an observation ward speeds their recovery. I feel lucky though, at least I’m coherent and stretching and antsy instead of delusional and bedridden like my elderly roommate who had a stroke two months ago. Listening to all of the family drama of having a loved one her with a serious condition is bizaare; I’m the fly on the wall behind this thin curtain separating the two of us. When the nurses change shifts and start asking him the same questions over and over again that he lacks the faculties to respond to, I want to answer for him since I’ve heard all of them before but I can’t decide how involved I should get. We just talked and he offered me a job and started talking about his investments. He thinks he’s at work, shuffling papers in some office somewhere thirty years ago; every nurse is an employee, every orderly a potential customer. We shook hands, his grip like iron, he asked if I would talk to him at night when no one was around, he tried to make eye contact but forgot what he was doing and glazed over, staring at channel six, the C.A.R.E network, still lives of nature scenes, canned music tinkles over waterfalls…
