Robert is an accomplished fine art photographer specializing in landscape photography. He has been married for 35 years and was diagnosed with Lyme disease twelve years ago. He talks about his passion for photography and how it was not uncommon for him to work 60-80 hours a week. All of a sudden he was home at 7 o’clock every night and immediately headed into bed. Not only was he sleeping 12 hours a night but he was feeling lethargic and developing a chronic cough. For the next five years his health continued to worsen until a registered nurse told his wife about the possibility that his condition might have something to do with a tick bite. As a professional landscape photographer, Robert spent 80 days a year camping and remembers being bit by ticks at least 50 times. He talks about his frustrations with being diagnosed with Lyme, as his blood tests were one band short of being CDC positive. Finally he found a Lyme literate doctor who did a full analysis of his health and did blood tests to ultimately diagnose him with late stage Lyme. Robert talks about both his conventional antibiotic treatments and adherence to alternative therapies. He also speaks to the dramatic changes he and his wife have had to make and both their professional and social lives while dealing with this disease. Brain fog and chronic fatigue have significantly altered his ability to continue his professional career that in turn has drained a significant part of his and his wife’s lives savings as he treats the disease. Robert has been blessed by having his wife by his side who has been a rock throughout this journey.
My name's Rob. I'm 63 years old. And I've been sick for about 12 years now with Lyme disease. I was the artist-in-residence at the Santa Fe Institute in New Mexico, and at that point in time, I was having five to six solo exhibitions a year. I'm a fine-art photographer. I'd invented kind of a new distinction in photography, and it took off like wildfire, so I was travelling all over the US and Canada. Like most working artists who are passionate about their work, I probably put in 60 to 80 hours a week, every week of my life, since I was 20 years old. It's what gets me out of bed in the morning. It's what speaks to me. That, and my family. I have two sons who are wonderful young men. So, my wife and family, we used to travel regularly, and it was over a period of about a year that I noticed that, contrary to my previously very active social life, that I was no longer coming home at 11 or 12 at night and going to bed and getting up and working, and suddenly, I was going to bed at seven o'clock in the evening. And it got worse and worse until I was not only going to bed and sleeping 12 hours a night, but I also started feeling, uh, lethargic. And the first symptom I had that led me to see a doctor was I developed a chronic cough. I coughed all the time.
So that was the beginning, of-of my decline, and it continued until Christmas of 2007. My oldest son was nearly killed in a car accident coming home from college for Christmas, and the stress of that event-within two weeks, I was sicker than I had ever been in my life. And that's kind of what kicked it off, was the terror of almost losing one of my kids. I have a Volkswagen camper, and that's how we get around. I woke up one morning on the banks of the San Juan River, and I was covered with bleeding sores, just out of the blue, that appeared literally overnight. And at that point, we were pretty frightened. And when we came home, I went and saw a skin doctor, and he said, "It's a rash," and he put me on prednisone, which caused me to completely melt down. That was a couple weeks before my son's car accident. And so, I spoke with a registered nurse in our town who had Lyme disease, as a result of my wife's having had a conversation with her, "I don't know what's wrong with my husband. The world's coming off the rails." And she explained it- she said, "My god, it sounds like he has Lyme disease. Has he ever been bitten by a tick?" And my wife said, "I don't know, 50 times or more." Because I'm a professional landscape photographer, so I-prior to getting sick, I spent 60, 70, 80 days a year either camping in the van or out in the field doing my work.
So, I called her on the phone and we talked for over an hour, and by the time I was done, I was absolutely certain that was the problem. So, I went and saw my doctor, our family doctor, I said, "I think I have Lyme disease." And he said, "No, you have a terminal illness." I said, "What's that?" He said, "People like you get on the Internet, and they think they know everything about their health. And there's no Lyme disease in California." And, uh-and I said, "Well, I want to be tested for it." So, he did a test and sent it off, and they said, "No Lyme disease." What I didn't know is that I'd only had four bands of the required five bands of antibodies to be considered with Lyme disease. So, he said, "This is not your problem." Our friend who is the registered nurse who suggested this might be the problem said, "You need to find a Lyme-literate doctor," and I said, "What is that?" And we talked about that, and eventually found our way to a doctor who is preeminent in the field. So, what he recommended was that we do a full battery of tests, the western blot and so on, which we did. And they came back with the same result that our family doctor had, the difference being when my doctor, my Lyme-literate doctor did it, he looked at the level of inflammation in my body and all these other things, and everything pointed directly to Lyme.
So, at that point, we had our diagnosis, and actually had a family dinner that night with my siblings and kids and everyone, and the whole dinner, I was sitting there thinking, "How can I tell them this?" Because by then, I was truly terrified, having done a lot of research learning that this is not, you know, you broke your finger, splint the finger, the finger is fixed and you go on. So, I announced with great drama that I had been diagnosed with Lyme disease, and I looked around the table, and everyone was looking. They said, "What is that?" But that was the turning point where at least we had a path forward. And finding out that there was this controversy about what is this disease? How is defined? And that I had unfortunately been one of the people who had been in decline for a couple years and now it had a hold on me. It had a hold on me big-time.
One of my collectors, a very prominent man, introduced me to the head of one of the major universities, their medical department, and they agreed to see me. And I went in after having had the diagnosis, and they said, "This is not Lyme," and they spent the entire time trying to explain to me why it wasn't Lyme, but couldn't offer me anything else. So, I was really astounded by their commitment to their own point-of-view about what was wrong with me. And our doctor, who was Lyme-literate and very prominent in the field offered me a way forward, and the other didn't. So, we began treatment immediately. I'd go to the hospital once a week, initially driving myself, for injections of a powerful antibiotic, bicillin. The immediate result was just a dreadful kind of feeling poisoned, likening it to maybe some of my worst college hangovers. And I was perplexed by that, and the doctor said, uh, "You're going to feel worse before you feel get better. There will be a massive die off. All these bugs have been growing in you for a long time, and when they die, they choke your cleansing organs." Within a month, I could no longer drive a car, was suffering, uh, the most horrific nightmares one could imagine. Nightmares so awful that it would take me days to get over them. Nightmares so awful that in my crazed brain, I tried to stay awake for days on end to avoid the burden of going to sleep.
As the treatment progressed, I started having daytime hallucinations. I couldn't be left home alone for my own safety. I think one of the most curious things was that I couldn't make the distinction between what was happening in real life and what was happening on the television. So, if there was gunplay on TV, I would hide behind the bed. I couldn't watch the news, because it was too, uh, too terrible. And there were times I'd want to get a little fresh air and walk down to the corner of the street I've lived on for 20 years, and wouldn't be able to find my way home. So, it was very, uh, traumatic. I went, saw the doctor every three months, and while my Lyme numbers stayed the same, I didn't get sicker, but it took a full year just to turn the situation around. But by turning it around, I mean, y-you know, it's been 10 years now being sick every single day. Stabilized, I think, is the most positive thing I can say about it.
The most significant thing that happened after that first year of injections, 52 weeks straight, was my visit with our doctor when my wife said to him, "I think there's something wrong with me." And he said, "Well, what's going on?" And she talked about how depressed she'd been, and running out of energy, and so on. And he immediately gave her a Lyme test, and she tested positive as well, and he started a very aggressive regimen of oral antibiotics on various rotations, 32 different antibiotics we took from him orally over the following years. And after a couple years, when we weren't making any significant progress, we started really looking to see what else might be possible. The joke around my house is: "Everybody's got the answer. Nobody's got the cure."
So, we saw the acupuncturist. I started seeing a nutritionist. The nutrition was terrific on a number of fronts. First off, I had a holistic healer, who was looking at the totality of this versus the traditional, uh, western medicine approach of finding what the problem is and killing it or removing it or fixing it somehow. So, he started treating all of me, and that was helpful because I had thus far just felt like I was in a war. And my frustration was that I wasn't getting better. Every time we'd see the doctor would be very expensive be course-because our insurance company attached themselves to the diagnosis of "No Lyme disease," and weren't going to be moved from it. So, we had to pay for all of this. So eventually, I thought, "There's got to be someone who can help here, someone who can actually end this nightmare." And it was about that time that I was told by the gallerist, "Hey, his wife had really bad Lyme disease. As in: she was in a wheelchair Lyme disease. And she's fine now." And anyone who's been sick knows all the great stories about, "Oh, so-and-so had it and they're fine, so don't worry." And so, I wrote it off. And about a year later, as my frustration with my lack of success grew-so I called her on the phone, and was utterly impressed with her.
For starters, she was healthy. She was at work when I called her, which is all I wanted to be. She told me about this doctor who had spent his entire life in infectious diseases, had retired to the area, and once retired started bumping into all these people where he diagnosed that they had Lyme disease that was untreated. So, he had reopened his trade, his practice. We went down and saw him on a Friday, and he announced that he would like us to move to his area on Monday, three days hence, to undergo 60 days of antibiotic infusion. I told him that that's easier said than done; that my wife and I are both working artists, and there's a very popular part of the country for summer vacations, and that we couldn't afford to rent a house or anything else. The next day, we were at our neighbor's home having a bite, and one of their friends walked in and she announced, "Gosh, what I would give to find somebody to live in my house this summer while I'm in New York." And it turned out her house was a mile away from this doctor's office.
So, we moved down due to the kindness of, uh, people we didn't even know, and the treatment began. Sixty days of IV infusions brought my Lyme numbers to the lowest level they had been in who knows how long. And he said, "You just can't work like you used to work." And so, I nodded, and said I understood, and he looked at my wife and he said, "He's going to go back to work, isn't he?" And she said, "Yeah. He is." And he said, "Well, you heard it from me. Don't do it." So, I went back, I rested for a month, I worked a little for another month, and then I dove back in, and at the end of that month, all the Lyme had come back. So, a few months went by, and I had to go back for a second round of infusions. Throughout this entire period of treatment, one of the most terrible things for me was that I lost my desire to create. Making art is a very high calling. It doesn't happen for me in the presence of lots of pain and suffering and confusion and so on.
And so, after that first round of infusions, I got home and I was looking at my darkroom and my studio, and I was thinking, "Well, there might be some interesting things to do here." And that was a breakthrough, just that I might still have an interest in doing that. And so, I did go back to work. I did get reinfected, and then went back for another round of infusions, which appeared to be successful. There were no traces of the Lyme antibodies, and it appeared that for the first time in, guess it was about eight years, that I was free of the bug. During the months that followed, I quit having acupuncture, I quit taking nutritional supplements, because it was a very expensive habit, and was extremely disappointed that my symptoms were present and persistent, and that's to say a terrible mental confusion. Chronic fatigue is- actually, you know, I just hate that name. Sounds like you're tired. And nobody's come up with a better name for it, so, you know, it is what it is. Chronic fatigue is profoundly debilitating. It's not that you're tired. I mean, I'm familiar with being tired. I kind of love to leave it all on the field, as they say in sports. But this is not that. This is, like, the inability to get on the field. The inability to think things through in a way that's clear enough that leads you into action.
The cognitive issues around Lyme are just devastating. So, yeah: the brain-fog is critical, and I think part of the brain-fog is in being in constant pain. It takes so much energy to address joint pain and soreness and the rest. We don't do our best work when we have the flu. [LAUGHS] And it just feels like a constant flu. We have lots, uh, lots of jokes about Lyme around the house. One of-one-one of my favorites is: "You can't sleep at night, and you can't stay awake during the daytime." And this is absolutely true. I have had such dreadful problems sleeping. Sometimes have to write down what I'm doing because if I walk from one part of my studio to another, I'll get to the other part of the studio, have no idea what I went in there for. So, I have to go back and recreate the whole thing. So, it renders you almost unable to function in social or professional society.
Having been healthy my whole life, I can't compare this to other illnesses, but one of the things I think that really makes Lyme distinct is that it's just a whole complex of problems. And so, you'll work on one thing, and another will fall apart. In my case, from time to time, I do public speaking. I continue to have exhibitions that my galleries mount in my absence. And so, when I have to be in public, I take a medication that's actually for sleep shift disorder, and boy, it's terrific. I feel almost completely normal for a period of a few hours, and then the next day, I feel like a truck's run over me, and I have to stay in bed for several days. So, it's like this seesaw, where okay if you're going to use up your energy and give a talk and you have to medicate yourself to do it, you just know that the next few days, you're going to be shot. Or you take a walk to the beach; you go out to dinner with friends, and it goes late into the evening. And so, you're constantly, every single day, measuring: "How's it going to go?" Today I got up early. I'm here. I will go home, and I will spend the rest of the day in bed. I'll get up, as I always do, at five in the evening, because if you stay past five and you fall asleep, you're in big trouble. So, I get up at five and we eat dinner at six, then I go back to bed at seven, and then I get up the next morning at nine. Then I will try and work for a couple hours, and then I go back to bed.
My life has gone from this kind of outward vision about, "What do I want to contribute to the world I live in," to being, "How is it going to be for me, and how can I protect myself?" You know, I've had a blessed life. I'm someone with no bucket-list, because every day I'm fulfilling my dreams, even though it may be for only a few minutes. I'm fortunate in that I'm part of a community that cares about me. My family. I have two gentlemen who've been coaching me, counselling me, one of whom's been sick for 25 years with a s-kind of situation, and the other who's a dear friend who coaches me with respect to my life and my art and so on. What's it like when you lose your life? What's it like when you go from being a brilliant, celebrated artist to someone who can't remember what he did the previous day? When you have all of the components of your identity stripped away, you find out that you're not any of those things, and in that is true, authentic freedom. Maybe the first real freedom I've ever had in my life. And I hate to think that this is what it took, but there's no question in my life that I am healthier in that regard now than I ever have been before. You know, I identified myself when I got sick, I was an artist, a father, a husband, a son, an active player in the community. And I had to let go of all those things, and it was certainly one of the most painful journeys I've ever taken, but when I came out the other side, and I'm not talking about being healthy, I'm talking about this loss of identity.
When I saw that I'd lost everything that I thought I was, and that I was still here, and that I was still complete and whole, something profound shifted for me. I used to lay in bed, and just grieve the life I used to have. I don't do that anymore. I mean, occasionally it'll come up, but usually now I spend my time in gratitude. I worked so much in the first 40 years of my career that I have a wonderful body of work that continues to support my family. That's Christmas for me now, when the phone rings, and it's a dealer somewhere, and they've placed another piece, or they want me to make another piece for them, it's a reminder to me that my life's been about something, and that I've served well. And that it's all right for me, even though this wasn't what I wanted. But it's all right for me to let the returns come in now for the investment I've made in my life. So, I work in my garden. I sit in the sun. I rest a lot. And I have made the most the journey. My wife has been my rock throughout this. I don't know if I'd be alive without her care. I've only had one job for 10 years, and that's to get well. And I still have that job.
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