a patient blog
"The worst days," he says, "are when you feel foggy in the head – chemo-brain they call it. It's awful because you feel boring. As well as bored. And stupid. And resigned. You don't have any motive, which is bad. You don't care what's going to happen to you. That lasts sometimes two days. And when that comes with nausea – even if you have eaten, you have to go and be sick – it's very upsetting."
http://www.guardian.co.uk/books/2010/nov/14/christopher-hitchens-cancer-interview
I don't care when celebrities get engaged, or divorced, or arrested, but when they get sick I find myself wanting to know every last detail.
"Brain Fog", for the first few years, was my main symptom and the hardest to define. When I try and explain it to people I always get the feeling they don't really believe me. Not because they think I'm a liar, but it's just hard to describe, and it's hard to fathom. Next time I will just say, "Christopher Hitchens put it best..." and rattle off this quote. Not that this is really "the best" description, but it's all in the name dropping. The idea being, if it can happen to him it can happen to anyone.
She went from being a college student suffering from apparent food poisoning to dropping out three weeks later. She visited doctor after doctor who assumed her symptoms — profound exhaustion, weight loss — meant she was depressed or anorexic until an expert at Johns Hopkins diagnosed her with CFS.
Karelis, a professor at George Washington University, has a simpler but far more radical argument to make: traditional economics just doesn't apply to the poor. When we're poor, Karelis argues, our economic worldview is shaped by deprivation, and we see the world around us not in terms of goods to be consumed but as problems to be alleviated. This is where the bee stings come in: A person with one bee sting is highly motivated to get it treated. But a person with multiple bee stings does not have much incentive to get one sting treated, because the others will still throb. The more of a painful or undesirable thing one has (i.e. the poorer one is) the less likely one is to do anything about any one problem. Poverty is less a matter of having few goods than having lots of problems.
See this is why, despite having terrible tooth pain all month, I'm just this week getting to the dentist.
"What?? You still haven't gone to the dentist? Why? What if you have an infection?"
Oh yes, what a terrible thing that would be...
I was surprised to see Dr. Lerner’s face on the front page of Phoenix Rising last week. A lot of doctors are mentioned on the forums there but I didn’t remember ever coming across his name in a thread. I read the headline “Lerner antiviral Treatment Trial Succeeds” with mixed feelings. Clearly this is good news:
“Long term antiviral therapy was effective - very effective - in many of his patients. Many of them, while not completely cured, are able to work and lead normal lives again - an astounding finding in this field. Some are completely cured.”
Still I couldn’t help feeling a little left out as I read the article. Dr. Lerner was the first CFS doctor I ever saw. But on my second visit, after two long drives to Detroit, he told me I didn’t qualify for antiviral treatment. Instead, I had erlichiosis, a tick borne disease, and should do six weeks of IV-doxycycline.
This was two years ago in May. A friend sent me some articles about his work, and we both got excited and made plans to see him. Every night between then and my appointment was like Christmas Eve, but instead of staying up late thinking about all new toys I’d be getting, I read the pateint testmonials page of Dr. Lerner’s website over and over:
“Today I am CFS free! Dr. Lerner gave me back my life.”
“My activities are not restricted. I can travel, exercise, and work. I need only a normal adult amount of sleep, as opposed to 10 or 11 hours.”
“After receiving treatment from Dr. Lerner, my CFS symptoms went into remission. I graduated from graduate school in 1998.”
And this one stuck with me the most,
“When I first saw Dr. Lerner I was so ill, staying awake was a big chore for me. I would sleep for 19 hours at a time. I would take a shower but be too exhausted to blow my hair dry.”
The last one was my favorite because that was one of my first symptoms in high school. Eighth, ninth, tenth grade, hair straightening was like my religion and accounted for 45% of my personality. For example, freshman year in the locker room I noticed a girl who I’d seen before with curly hair was now wearing it straight. We struck up a conversation about blowdrying, and we remain best friends to this day.
The trick was it had to be done right after you showered to get it just right. Those curls came on fast. And then in a matter of weeks, all I could do when I came out of the shower was collapse on my bed. Post-shower naps became routine. The word “enervating” became part of my vocabulary, as in, “Showers are so enervating!” I had to wear ponytails all the time and put lots of anti-frizz gel on my air-dried hair. And yet, it never occurred to me this was a sign I was sick. I know I was always saying then, “I think I have mono” but the doctor kept telling me I didn’t, so I believed her, that I was normal. So if I was normal, than everyone else must be incredibly vain to put so much precious little energy into cleaning and styling their hair! I am a brilliant rationalizer.
It wasn’t until six years later when I started having what I thought of as “physical symptoms” like constant pain, that made me finally realize there was something really wrong. Reading that testimonial is what really made me identify with CFS as a disease. “Chronic Fatigue” wasn’t very concrete, but “Oh! I have the ‘too tired to shower and blow dry your hair’ disease!” rung true.
My mom and I sat across from Dr. Lerner at our first office visit and he told me I was going to get better. It was hard to believe, but I believed him anyway. Even when he told me I didn’t have the right blood test results for the valtrex/valcyte program, I believed when he said that treating erlichia was the answer. It happens that I was bitten by a tick before my first symptoms appeared, a year to 18 months before I got sick really. I was on vacation with my family and we went on a horseback ride in Wyoming. My mother was cautious of ticks, and made sure we all wore long pants, but tragically, it was 1998 and flared jeans were all the rage, so the tick had no trouble flying up to my leg and latching on for a good few hours.
I was actually really happy to have this diagnosis. It made me forget completely about Dr. Lerner and Valtrex. I told all my friends and family I didn’t have CFS, I had lyme disease. But there were some problems, no doctor I saw in Cleveland agreed. Because I didn’t want to live in Detroit for six weeks to get IV doxycycline from Dr. Lerner, I asked if he’d write me a letter I could take to an infectious disease specialist back home. This is how I found out that Lyme disease was something of a controversy. No doctor I saw agreed with Dr. Lerner’s diagnosis. They said there was no such thing as Chronic Lyme.
Now it was all making sense. There had been a couple of times over the years where “What about Lyme disease?” had occurred to either me or my mom. But whenever I asked my doctors about it they’d say, “You don’t have lyme disease. Don’t believe everything you read on the internet.” or “There’s no lyme disease in Wyoming or Ohio.” And so that was that.
I read Cure Unknown. I watched the trailers online for the yet to be released Under Our Skin documentary. I was convinced that this was what I had. There were descriptions of symptoms in Cure Unknown that I really identified with. There was even a description of writer’s block like what I went through in high school:
Mark, meanwhile, was teetering at the brink of professional disaster. He’d spent twenty years writing for national magazines and health foundations in New York City, yet now was so blocked he was in danger of losing his job as editor in chief of the newsletter Bottom Line Health. His memory, previously detailed and precise, had become so spotty he had trouble following the train of a simple story.
And another one that summed up perfectly in a few sentences what had been my high school "sleeping problem" experience:
Our youngest son, David, began to sleep – first so long that he could not do his homework or see his friends; eventually, so much (fifteen or more hours a day) that he could not get to class. Violating the strict attendance policy at his prep school, he was asked to leave.
The only difference is I left prep school before they could ask me to leave. And then I slept through public school. Looking back, if I couldn't have been diagnosed with CFS, I'd much rather have been diagnosed with Lyme than with depression. I'd rather have taken months of antibiotics than months of antidepressants.
I read more about Lyme. In Peggy Munson’s blog I found this quote from Amy Tan about her experience with Lyme:
"By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery."
Again, sounded like me.
I even wrote an e-mail to Pam Weintraub, who wrote Cure Unknown and asked her what I should do. I’d been taking oral doses of doxycycline every day, but Dr. Lerner wanted me on IV. The only way to do that was if I moved into a hotel in Detroit for six weeks, he wanted me in the area. I didn't want to do that if I didn’t have to. But Dr. Lerner was adamant and said if it was him or his family, he’d do it. Pam Weintraub wrote me back and said that IV doxycycline made a huge difference for her son in a way that oral did not.
I was going to do it. My mom and I drove up to Detroit and looked at different hotels. Then I though I should get a second opinion from another “Lyme literate doctor”, ideally someone who would set me up with IV antibiotics at home. I made an appointment to go to Mt. Kisko , NY and see Dr. Daniel Cameron, the only doctor I’d read about in the book who was still treating patients. When I got my blood work back from him, it said I did not have erlichia, but I did have Bartonella and two others, I forget which. Now I was getting an idea of how unreliable these tests were. Still, I continued on oral doxycycline. Dr. Cameron didn’t think I needed IV anything and that was fine by me. Later we switched to Cipro.
After a few months of daily antibiotics, I didn’t feel much different. My skin was beautiful and clear, but my eyes were so sensitive to light I couldn’t look out the window. I’d heard this was a symptom of lyme disease, but to me it seemed to get worse with the antibiotics. I wondered if it was a “Herxheimer Reaction”. When I asked Dr. Cameron if the antibiotics could be causing light sensitivity, he said no. But it sure went away quickly when I went off them.
The whole lyme thing was just too complicated. If you’ve read Cure Unknown you have some idea of how hard it is to beat lyme with antibiotics. I went back to CFS. I heard about Dr. Enlander and was able to get an appointment with him quickly and start on hepapressin. A few weeks later it was time for the appointment with Dr. Chia I’d scheduled 6 months earlier. Dr. Chia is the only CFS specialist I was referred to by an actual doctor. When my endocrinologist couldn’t find anything wrong with me she had said, "Dr Chia is doing some wonderful things for CFS."
I liked Dr. Chia, but I didn’t do his protocol, the oxymatrine. He said since I was on hepapressin it was basically the same idea, I should keep it up, and if it didn’t work, try the oxymatrine. I still have the prescription, but by the time I finished the hepapressin I was already moving on to Dr. Cheney. During my visit I told Dr. Chia how I’d been on antibiotics for lyme disease. He told me the thing about lyme disease is that anyone will feel better when you put them on antibiotics because they are anti-inflammatory.
My mom did call my doctor when I got a tick bite, but the doctor said the same thing then they say now. If there’s no rash or flu symptoms, don’t worry. So we didn’t. For a long time I thought that if I had gotten antibiotics early on I might never have gotten sick. Now I’m not sure.
I forgot about Lyme for awhile, but when Under Our Skin came out I still wanted to see it. I went to the LA premiere in a little theater on Wilshire. I’m sure there were less than fifty people there, probably less than forty. I cried through the whole thing. I think a lot of the audience did. I don’t remember much about it now, but I walked out with a green rubber bracelet. If I ever get another tick bite, I’m going to want some doxycycline, just in case. But I don't tell people I have lyme anymore, I'm in the CFS camp.
