The Echo Flu
There isn't anyone who owns a business who doesn't work sick. I had the flu. Once the chills and fever subsided and I could back away from the porcelain bus, I was back at work, at the very least to put together bank deposits and review deliveries and incoming shipments. Comtrex was the drug of choice. I didn't know which was worse the drugs or the flu, I hated both. A few projects got pushed out, I rescheduled
some meetings and slowly got better. But it never went away, and then I got it again. Whammo. Chicken soup, ginger ale and this time I graduated to Nyquil. I went in each day for a couple of hours in the morning, really lame, and came home to crash on the couch with our young cat Annie. She was a real sweetheart. She'd curl up right under my chin and purr. I needed that. I hit the couch just in time for opening arguments of the O.J. Simpson murder trial. Oh boy.
I stayed this way for a couple of weeks, half days, painkillers, cold medicines and Nyquil each night to sleep. One cold morning during this slump I was late getting out of the house and had to rush. I had no time to read the paper but while the truck was warming up I ran inside and scanned the headlines, and took a brief look at the obituaries. Just as I was closing up the paper to leave I saw a name I knew. Francis Peisch had died. No, it had to be someone else I reasoned, I had just seen him at Christmas and he was fine. But it was true, it was him, he was dead and I was unprepared for that. Francis was my mentor and friend and guiding star. Whenever I spoke with him I was buoyed for days. I'd arrive home after I had either seen him or spoken with him and I'd tell Barbara and she'd watch me glow. He made me feel honored and I was not ready for him to be gone. His mother lived to be over a hundred and I expected the same. We went to the wake and I was jelly, barely able to contain myself. The next day was the funeral and we sat through the service, then walked in the procession to the grave site out back. It was winter and cold, but the sky was crystal clear and very very blue. It was indeed a very blue sky, ...that day.
Sunday mornings were special. I went in to work and had no interruptions. It was just me and Mozart. I did the paper work that ended one week and started the next. I recorded the closed business and matched invoices with orders for the next week. I counted the money and prepared the deposits. I enjoyed it because the volume of orders and money I handled was substantial. Business was good. There were good sales. The afternoon crew showed up at 11:30 to vacuum and prepare the store for the noon opening.
Paul arrived on time, that particular Sunday, the Sunday after Francis had died. I was finishing up my work and he was starting his. It was like it had always been, when, in a heartbeat, I was unbelievably sick again. It came out of nowhere in a wave that slapped me into my chair, took my breath away and knocked me senseless. I was covered with sweat. Wow. I told Paul I was sick and leaving everything just as it was, made my way to the truck and drove home. I went straight to the bedroom. “I've really got it this time”, I said to Barbara on the way by, and I crawled into bed.
Never in my life had I been sick like this. I felt like I had been beaten with a sledge hammer and I couldn't move. My arms and legs were made of lead and an anvil sat on my chest. My only activity was when I had to pee. I didn't know whether or not my eyes were open, then I knew they were open, because I had to pee. I didn't see anything really, it was just that gradually I wasn't asleep any more. Having to pee was that singular piece of reality that caused my body to move. I never sat up but started a slow roll that eventually got me out of bed. I couldn't clear my throat. Damn. There was a rock wedged in my lungs and no amount of hacking could chip away at it. There was a chair at the foot of the bed where I could take a break on my way to the bathroom and again on the return trip. It was an island in my lost sea. I'd crawl to that chair and slump. It was hard to breath. The TV was up on the armoire so to see it I managed to not sit up but still kind of figure out what was happening I think. It must have been some kind of osmosis. Changing the channel was a masterful act. With remote in hand, I'd raise my arm in an arcing motion and manage to click it before my arm fell back onto my lap. Click. Regis and Kathie Lee. I stayed there. In the recesses of my mind I knew I was terribly embarrassed. Regis had on one of those weird shirts where you don't have to wear a tie but you're still dressed up. What a jerk. And then it was something else. By the time I figured it out, Kathie Lee had been gone for half an hour. Whoa. Where was I? I had spent the better part of an hour staring at the floor yet I still didn't see. My arm arced in another circle and I clicked twice as it fell. CNN. Score. I was back to lying across the bed. I had no idea what was happening, barely understood where I was. It hurt everywhere. Soon, maybe the Simpson trial. Maybe not. My little cat Annie was curled up in the crook of my arm and her little face rested against my cheek. We slept. Then I had to pee. Damn.
I was like this for weeks. Before this happened, if I was away from my desk for two hours it took me four to catch up with messages and events. Now I had been gone for a long long time and I don?t know if I even had a recollection of what I did. It was distanced in my putty-like mind. Barbara took my keys. I didn't understand but I must have understood something because I didn't argue. I didn't anything. She brought me to the doctor each week and he did all those tests that doctors do. I wasn't afraid, I was too dumb to be scared, but I knew it was serious and once he found out what it was I would have to endure whatever medical horrors were determined to get me well again. But he found nothing. Was this good or bad? There were discrepancies in my liver, but that was from the virus. He tested for hepatitis, mononucleosis and leukemia, and found zip, nada. They did chest ex-rays because of that rock in my lungs but they were negative. After a month he gave me the good news. He said “I can't find anything wrong so you don't have to see me for thirty days.” I was dumbfounded. Even through the fog I knew that this was very wrong. I could barely move. I thought I belonged in the hospital. I said, “I'm sick and you're the doctor. I'll be back next week”. I was.
There was a time, I had been out for a month, maybe six weeks, when Barbara brought me back to the store where I worked, or used to work. Used to work, heck, I owned it, I lived it, I loved it, I belonged there. We were on a roll. I needed to get back and get on with it. I had a family to support. I had new product
lines to introduce. It was a Sunday morning and it was quiet. She dropped me off and told me I had an hour and she'd be back to get me. “This will never do,” I thought, but again I didn't argue. When I moved through the showroom it was like living a dream. While it was all intimately familiar, I didn't recognize a thing. It was all so strangely weird. I walked in tiny little baby steps, hunched over, as I made my way to the desk and sat down. I stared at it all and occasionally reached out to move a paper or two. Ever so slowly I collected things that were important and put them aside. I got the checkbook. I would glimpse something that would jar my memory and then just as quickly, whatever importance it held disappeared and I didn't know what I was doing. When Barbara came to get me I was on the floor by the back door with a little box of stuff and she took me away. God bless her.
The thing about a damaged brain is that you're the last to know. It has to be a defense mechanism. There was a time when I was very quick and very bright. I'd have phone lines backed up and people waiting to see me and with each new person I was up to speed in a heartbeat and ready for more. I loved it. I was alive! I was a player! I always wanted more. Now, unable to move, my arms and legs were set in stone and there was that damn anvil on my chest, and the inside of my head was packed with gauze. When I thought of anything, it was in slow motion and by the time I got to the end of a sentence I had no idea where I had begun. But of course, I didn't know that. I can only recognize that now, in hindsight and reflection. When you're dumb as a bucket of rocks, it's surprisingly blissful.
I remember talking business on the phone. I was stretched out across the bed with faithful other cat Alfred on my right, phone on my left, receiver wedged between my ear and a pillow so that it used no energy to hold it. I didn't think twice about that. I didn't have the strength to hold the phone. I told my banker I was sick. That's all I remember. Wait, I know I wanted to say more and maybe I did, but that God damn anvil was in the way and I had a pounding headache. Anything left over got sucked into the gauze. And that's the way it was, day after day, week after week. I only moved when I had to pee. If I wanted to go downstairs, I scheduled it, and when it did happen it was a production. I made it into the shower at least twice a day where I ran the water as hot as I could bear for as long as there was hot water to run and the room was thick with steam. I wanted to carve that rock out of my chest, but it didn't work. I couldn't clear my throat. You cannot imagine the level of frustration that brings. I hacked and hacked, but to no avail. Damn.
Then,... each day, I took in the mail. The mailbox was outside and around the corner. Barbara let me do it because she knew how much it meant to me. She deliberately avoided grabbing it on her way by when she got home because it was my job. Getting the mail was another production number only this time it was premeditated. It required shoes and sometimes that took hours. I did it every day. On Sundays I rested.
The doctor didn't know what it was or what to do. First he called it a prolonged viral illness, then a successive viral illness, then a viral syndrome with fatigue and possible anxiety, then a viral fatigue syndrome. After a few months he called it chronic fatigue syndrome and I had a starting point. He said it could last one to three years, but I didn't believe that for a second. In my mind this was going to clear up and go away like any other well behaved flu and I would get back to the store, play catch up for a while, do a kick-ass campaign “The Boss is back!,” do some giveaways, generate some volume, and we'd be off and running again. Simple. The doctor didn't know what to do and he asked me to go to a depression group for evaluation. There must have been a dozen of us, and we all took a test to determine our sense of self worth. If you scored a 30 or higher you were in trouble. Everyone got 30's 40's and 50's except for me. I got a 7. The facilitator said, “you don't belong here.” I told her that I wasn't depressed, I was really sick with no where to go and terribly frustrated. She didn't have any answers and sent me home. I was really glad I didn't have what the others did. Depression is a terrible thing. Good thing I was only sick. After that, the doctors suggestion was, we do nothing. Really. Zip. And just like that, I knew that I had to become the doctor and heal myself. With the syndrome name, I could begin that process.
My friend Phil McCarty suggested acupuncture. I immediately went to see a practitioner out of the yellow pages. I found keys and drove there myself, it was eight or ten blocks. The office was on a second floor and I remember being at the bottom of that daunting single flight of stairs and how it took forever to get to his office. Those stairs were the Matterhorn. He listened and paused when I told him I felt hollow to the bone. A hollow sensation was referenced in Chinese medicine and that was something he could treat. He put me on the table and stuck me with thirty needles. I didnt feel a thing, and he left me for twenty minutes to cook. It was kind of nice, a little new age music, spread out on the table, tacked down like a filet. It cleared my meridians and energy flowed. They call that chi. When I left his office I drove to the store and chatted with Gary, my installer, and Barbara. They saw a new person, and/or, the old person. I was excited from the treatment and felt reborn. I went home and slept soundly and deeply for the afternoon. When Barbara came home we had wonderful conversation, complete with depth and clarity. She told me we hadnt talked like that in months. I slept like a baby that night and when I got up I felt terrific. Yeah team! (Francis used to say that.) I declared myself better, showered, dressed and went right back to work. When I entered the store, I walked across the showroom at a brisk clip. Boy it felt good. Walking quickly was wholly unfamiliar, but not for long, because in another one of life's defining moments, I slammed into an invisible brick wall. I didn't see it coming, that brick wall, and I took it at full speed, and crashed. When the stars and chirping birdies faded somewhat, I crawled back to the truck, slunk home and crawled into bed. I was overwhelmingly sick. The brief respite from the acupuncture was like someone had turned on the lights for eighteen hours. It was a glimpse of normalcy, a spectacular little window on the past, but now it was gone. I was as sick as I was before and again unable to move. Well not quite. I did get up to pee. And then if I wasn't in bed, I sat in the chair and stared at the floor. The endless scourge of malaise had returned and my ability to function was again, only to fulfill the most basic of human needs.
My friend Chris had cancer. He had an inoperable brain tumor the size of his fist and was being treated with a special kind of chemotherapy. No one could say why he had cancer. He was strong and healthy and an athlete, forty years old and with two small children. We talked on the phone and shared sickness stories. I remember once he had to cut the call short because he had to go to the hospital for more chemotherapy and was all excited. I said to him, “Not for nothing Chris, and if you don't mind me asking, you're all pumped up, but isn't chemo very difficult?” He said to me, “All I know is that I?m killing cancer cells, and for that I'm happy. Yahoo!” Chris had mastered the vitality of life that comes when you're counting time. I admired the attitude and courage and I tried to get some to rub off. I uncovered a stash of pot that had collected dust, rolled what there was into joints and mailed it to him “Priority”. It was the least I could do. I almost wish I had gotten caught. Bastards.
Long before I had taken ill we had scheduled a business trip to Florida, and it became my goal to be better for that. It was an annual opportunity to meet suppliers, develop business strategies, wine, dine, carry on, and share stories from the good old days. This convention was in Orlando and I was bringing the family. I was also scheduled to receive an Aqua Award for successful advertising campaigns so I really had to be there. As the time for this trip approached, I hadn't been out of the house in months and could barely make it up or down the stairs, never mind fly to Florida. We went anyhow. I remember sitting in the airport, retarded, and not too sure of my ability to function. On the flight to New York I talked a little with another passenger and while he sat next to me the conversation was long distance. I don't think he knew that. I don't think I knew that. By the time we arrived I was goo. I was stooped and flu-like and my head was hollow and made of lead. I tried to get the rental car, but Barbara took over and got us to the correct hotel. The next day, she went to the show with David and I didn't. People had said to me when we left the Vermont winter, “If you're going to be sick, it might as well be poolside,” and implied that what I really needed was some sunshine and warmth. None of it made a difference. If anything I was worse. Later, they brought me to the trade show and I was in a fog. I was unstable and couldn?t complete my thoughts. Walking the show and seeing regular friends was like seeing slow motion through backwards binoculars. The floor was spongy. I didn't know what to say. I couldn't get words from my head to my mouth.
On our third night, we were part of a private party at Universal Studios, and I rented a motorized cart. My friend Chris was there with his family. His cancer was in remission and we ate Italian food, really good Italian food, with the sun-dried tomatoes and the prosciutto. It was like a moment out of time and nobody talked about being sick. I'm glad we had it. I never saw Chris again.
On our last day in Florida, Barbara drove us to the Kennedy Space Center. I was vegetative, too sick to sit, too sick to lie down. My choice was to stay in the car in the parking lot, comatose on the back seat, or ride in a wheelchair. I took the chair and throughout the tour, there was me and this old lady at the back of the crowd, slumped in our infirmities. I was humiliated. I was so sick I wanted to die. I was embarrassed. I was somewhere in an ethereal world miles away from that pudgy body plopped into that canvas chair. My arms were made of lead. My head was rubber. It hurt. I was scared. How could this be? When we got back to Vermont I was worse than when we left. I was right back into the empty routine I had left, sleeping with the cats and leaving the TV set on the Simpson trial. Any thought of physical activity beyond going up or down the stairs or getting the mail was out of the question. When I wasn't in bed, I stared at the floor. I tried to work out some business things by spreading invoices out on the carpet, but I was lost. When I used the computer it was for maybe ten minutes before I failed. I couldn't focus. When I tried, it exhausted me. This was not good. My physician sent me to an infectious disease specialist for a complete workup. The new guy's office was in a hospital and as I followed the corridor I passed some very sick people and felt an ominous pall that decried the beautiful spring weather outside. This was a serious place and they were looking for serious disease. The patients I passed were irreversibly ill. The doctor I saw was looking for cancer and I shared the concern. It had to be ruled out and fortunately
it was. In his report he said of me:
“I do think he falls into the category of diseases that we call chronic fatigue syndrome. He does not quite meet the case definition since he has been sick for less than six months. On the other hand, all of his symptoms sound very much like chronic fatigue syndrome... Beyond that, I find no evidence of cancer, chronic infections or HIV. I had a long discussion with Mr. Carlson about chronic fatigue syndrome and the fact that we did not know the etiology, nor how to treat it.”
I don't remember the doctor being as clear to me as he was in his letter about not knowing the cause and not knowing what to do. He let me borrow a magazine that I didn't understand but I did make sure to get it back to him. I mailed it. That in itself was an enormous task. I was nowhere. I had no idea what was wrong or what to do to fix it and neither did anyone else. I continued with the acupuncture but had yet to achieve the same response as my first visit. The acupuncturist also had a Chinese pharmacy and I bought a bag of herbs to make into a tea. There was nothing to lose. The deal was to boil the herbs for an hour then strain the liquid into an empty milk jug. The smell was dreadful. I let it cool overnight in the fridge and the next morning poured myself a cup. The prescription was for a cup a day. The first taste of this drink put me in shock. Never in my life had I ever tasted anything this terrible. It's hard to explain. It went beyond tasting bad, it defied imagination. It was like a cross between dirt and shit. I mean real shit, (sorry). Aaaagh. To drink a whole cup of this was out of the question. I gagged. It was intolerable. But, I calmed down and worked it out. I had too. Next to the brew I put twice as much strong fruit juice. I'd force a slug of the God-awful slop then immediately wash it down with twice as much fruit juice. It was a laborious procedure, and only worked because I didn't vomit. Wow. How many cups in a gallon? Please help me dear God, no. When you're sick, you do what you have to do to get better. Drinking strained shit falls into this category. For the most part, Chinese medicine is mysterious, ethereal and provocative. In it's own way, the tea qualifies. Western medicine doesn't recognize any of this, but western medicine suggested I do nothing. Zip. Nada. In my short history, the only thing that made any difference at all was the first acupuncture treatment. I had no where else to turn. I went in twice a week for acupuncture treatments and drank three (count them) three cups of rancid mud each day. This goop even had the consistency of raw sewage, and it never ever got any easier to get it down. I played tricks with juice concentrates and chocolate to cheat my gag reflex. I hated it but I did it. Throughout this particular course of action I drank seven gallons. No one wanted to get better more than me.
It had also been suggested that I take vitamins. I had been to see a nutritionist a year earlier and she said I didn't need them. Actually, what she said was, “Either take them or don't take them.” What she meant was to not be inconsistent about taking them, but what I heard was you don't need them. I bought some grocery store multivitamins and vitamin C and I think vitamin E too. To me this was futile. Quite frankly, I was an old hippie and when you took something, if you didn't get off in twenty minutes it was a dud. (bummer). That's what vitamins were like to me. I didn't see or feel anything different and neither my doctor or nutritionist encouraged them. On the positive side, they probably wouldn't hurt me. That's all they said. Hardly a ringing endorsement.
My friend Michael called me and told me about these fabulous vitamins he was hawking and told me that they were different from all the others and they represented a terrific business opportunity, too. Whoopee doo. But the thing is, Michael was one of the boys from Sticky Fingers and he had mentored me through my waterbed career. Michael was close and like Chris, (he had introduced me to Chris) he was one of my best friends. We shared a twenty year history of business success. I was always open with Michael and I always learned from him. We cared for each other, and when we were together it was holiday. Most recently, Michael had been through a handful of network marketing experiences and I shared some and watched carefully the others. Michael was a race horse and to follow him would ultimately lead to success. It was time to be obedient. I gave him my credit card and told him to do whatever it took, to send me the vitamins and put me in a position to take advantage of the business thing. I had no intention of following through on the business because I already had one and I couldn't do that, but Michael was excited and I didn't want the next great coming to pass me by. The very idea of learning something new came across as absolute mush to my feebled brain and was out of the question. He sent me the vitamins and I took them. I also began comparisons. Michael could tell me he had the best thing since sliced bread but I had to learn this for myself. I listed the ingredients and found other brands and listed their ingredients and made up comparison charts. This took weeks, maybe months, did I mention the mush? I found information on the computer. I had been one of the first on my block to establish a second phone line to go on-line and through CompuServe, started to research vitamins. What I uncovered was overwhelming and actually quite disturbing. I downloaded stacks and stacks of information and filled two binders to overflowing. It was one thing to gather all this information but wholly another to recognize what was relevant to me and what was with or without an agenda. I didn't trust anyone really and from my farthest reaches of understanding came the hint that I couldn't trust my own ability to be rational either. Like I said, when your brain is damaged, you're the last to know. To say that my head was thick is an understatement. It ached from the inside out. None the less, it was overwhelmingly clear that I had to be the doctor now and that decisions regarding my course of action had to be mine. No more blind trust. Damn. It wasn't necessarily paranoia that kept me looking for hidden agendas as much as street-smarts from years of being bamboozled and that was internal. When I did uncover what appeared to be a substantial lack of priority, surprise surprise it came from within the medical community itself. In the business world, selfishness and greed are prime motivators, but here that wasn't so obvious. At first it appeared to be profound laziness but in time I'm sure greed entered the picture. It always does. This time it just wasn't apparent.
The first thing I learned was that a lack of proper nutrition was a common denominator in most chronic disease. Someone could look and feel healthy and be malnourished. Someone could be fat and be malnourished. A doctor could easily give someone a clean bill of health and that someone could easily be malnourished. I learned that the essential nutrients for a strong and healthy body were no longer in our food the way they used to be. I learned that this depletion of nutrition was something that had happened gradually over the course of my lifetime, since the development of chemical fertilizers just after WW II. I learned that diet and nutrition weren't studied in medical school. Hello. And I learned that perhaps my best chance at recovery would be to strengthen my immune system so that my body could heal itself. Did I mention that nutrition wasn't studied in medical school? In an average four years of study, maybe two weeks was spent on nutrition, yet lack of proper nutrition is the foundation of all degenerative disease. Even through the fog and the malaise I was boggled. I had the suspicion that I was up against something far larger than just my individual disease. I think I caught a glimpse of Goliath.
I had purchased a disability policy some years before and to qualify, had to be disabled for ninety days. I had passed that point and made the call. They sent a man to question me about what was going on and I spilled my guts. A few weeks later, they started sending monthly checks. Thank God.
Barbara had negotiated with a realtor to buy a house. She did it all, and it worked. We found a ranch house down the road with a nice kitchen and woods in the backyard and she worked it all out. When it came time for the closing, they propped me up and brought me in. I functioned well for that time and no one knew I was sick or hadn't worked in four months. If they knew, it would've squashed the deal. We got away with it and with lots and lots of help moved into our new home. I established the den as mine and throughout the days crashed on the couch obscured by my stupor. The Simpson trial progressed into the summer, and I knew deep in my heart that he was innocent. The real killer was after that drugged up whore, Faye Resnick.
The Travelers Insurance Company assigned an agent to my case and he told me that I had to see their physician for another opinion. Any one or any thing that would shed light on my infirmity was welcome, as it was clearly obvious that I wasn't getting any direction locally and I needed help. Then he told me the doctor was in New Hampshire.
There was a time when I traveled New England with ease and abandon but that ability was a distant memory now. At best I was good for a few blocks, maybe as far as the city line. But there was no choice. It was either see this doctor or lose the benefits. Naturally Barbara took me. The good news was that I was going to see a physician with experience in chronic fatigue syndrome and I would get a chance to learn something from him and maybe find the cure. The bad news was that he was hired by the insurance company and that whatever he ascertained about me or my future was for them to know and me to find out. It was a long ride and Barbara left me with him for an hour or so, then picked me up and brought me home. He was a delightful man, oozed compassion and had a parrot named Zonker which was cool. But he was short on answers and even shorter on guidance. What I did learn was that to travel this distance even as a passenger and to be active for this amount of time left me flat on my face in bed around the clock for more than a week when I got back. And while that was what happened, I didn't really learn it yet either. While I was far worse as a result of the travel I didn't have the mental capacity to know it was the cause. I wasn't aware that this extended activity worsened me, just that I was sick, sick, sick. Those were days on end when I didn't get dressed but simply managed from the bed to the couch and back again.
The report the doctor filed with the insurance company contained the insight I needed to at least identify what I was up against, but it was not to be. The Travelers kept it to themselves and it took two years and repeated efforts on my part to see it. Nothing was clear to me then, but in hindsight it's appalling. The doctor was experienced with chronic fatigue syndrome and was able to recognize in me what had been clearly defined by the Centers for Disease Control. But I didn't hire him and other than being current on my premiums, I didn't pay for him, so I didn't get to benefit from his knowledge. The Travelers learned what they needed to know and my level of suffering was apparently irrelevant. Not that they were deliberate in their malfeasance, it just didn't matter. I was kept in the dark and remained engulfed in the shades of gray that embodied my soul.
The following is excerpts from his report which I present now in context but out of place chronologically because none of it came to me. It was their knowledge, not mine.
“This 48 year old man has been profoundly disabled by persistent fatigue since early January of this year. Prior to that he had been in his usual state of excellent health. In early January, he experienced the onset of a viral-like syndrome characterized by fevers and chills, myalgias, headache and fatigue. Initially he recovered, but this illness was followed by three or four relapses taking him through the months of January and February. Essentially his symptoms were the same each time but gradually resolved by March. The month of March was characterized by severe fatigue and prostration. He reports sleeping about twelve hours a day and taking frequent naps during the day. He found that he was completely unable to work during this time, even though he is an independent
businessman and his furniture store requires his close personal attention.
He describes this fatigue, which he experienced in March as the most distressing part of his illness. Since that time, he has experienced gradual improvement. In addition to his gradually resolving fatigue, his chief symptoms have been recurrent feverish feelings, occasional headaches, and a sense of cognitive impairment with impaired word finding and poor memory and difficulty concentrating. He takes as many as twelve advil daily for his headaches but does not do this every day. ...
Since medical science has nothing to offer him by way of a cure, the patient has turned to alternative medical therapies. He has been receiving acupuncture since sometime in late March or early April, and he dates the onset of the improvement in his symptoms to beginning acupuncture. In addition he is taking a number of herbal remedies, including a Chinese herbal tea which he cannot identify and numerous vitamins, including a megavitamin supplement; vitamins A,E, and C in combination form. He is also using omega fatty acid, fish oil, primrose oil, (and a) preparation of chelated minerals. ...
He denies any depressed mood. He is unable to perform his usual activities, but he has not lost his interest in them or his enthusiasm for life. He has no somatic complaints referable to a major depression. Indeed the patients affect is very animated and sincere. He seems to genuinely want to improve and return to his work.
DIAGNOSIS: Chronic fatigue syndrome. Actually this patient meets the classic CDC definition for chronic fatigue syndrome which was initially devised in 1988. Unfortunately, epidemiological research has not shown this case definition to define a specific group of patients either with respect to risk factors or with respect to prognosis. Especially characteristic features of this patient's case includes rather sudden onset with the flavor of a viral illness and the presence of pharyngitis, headache and myalgia. He had a series of relapses leading to profound fatigue which has greatly impaired his ability to function. The original definition called for a greater than 50% reduction in the level of function for a six month period. When he was first seen by in infectious disease consultant, he had not yet satisfied the criterion of greater than six months of fatigue, and he now satisfies this criterion. ...
Unfortunately, no etiological agent has ever been identified and no specific therapy is available. Investigators differ with regard to the prognosis.... but the general impression seems to be that despite ups and downs, most patients will experience improvement within 1-2 years although a significant minority of them will still be symptomatic and effectively disabled. ...
Although formal neuropsychiatric testing has not been performed, I find no evidence of somaticizing, abnormal thought content, or desire of secondary gain in Mr. Carlson's case. Indeed he has shown considerable initiative in going beyond the boundaries of traditional medicine in an attempt to find a remedy for his illness.”
Now this is what I should have learned, that I was a classic case, that people remain fully disabled for a long time, and that there is no known cause or cure. But I didn't, because the insurance company wouldn't share that with me. Instead I kept trying to learn things on my own at my own feebled pace. I saw my regular doctor every couple of weeks but he had nothing to offer, I just went. Through a friend and out of pure happenstance, I learned of a doctor in Essex who was more experienced at dealing with this. My friend had a version of what I was dealing with and this doctor gave him some kind of intravenous therapy that worked and he got better! This was certainly welcome news but when I shared my discovery with my primary care physician, he told me to stay away. The intravenous therapy was unsubstantiated and dangerous he warned, and it could cause me serious harm. The last thing I needed was something that made me worse. I spent my time in my nether world, getting acupuncture twice a week, pounding vitamins, and waiting for the bad dream to go away. I wanted this whole thing to just dissolve and clear up like a good flu so that I could get on with my business. Barbara was running the store and taking care of David and shopping and cooking and doing the laundry and washing the floors. We both expected whatever I had to eventually go away and I would be back at work, so whatever she did there was temporary. I had one employee, my chief installer, who was getting cranky. I had recruited him when the store was new, had a good relationship, and knew how to treat him with kid gloves to get the job done. Barbara had a different style. She wasn't a baby sitter and regarded him as another adult. Under our difficult conditions she expected the work to be done, period. He started whining behind her back. He came to me. I was behind a wall of fog and could do nothing. I tried to explain what I was dealing with, for that matter, all I ever did was try to explain what I was experiencing, but my babbling fell on deaf ears. It wasn't what he wanted to hear. He continued to whine, and like a stone in your shoe, a disgruntled employee in an important position can start to unravel the best of businesses. Ours began to limp.
Summer became fall and I experienced no change. I found information on chronic fatigue syndrome and tried to educate myself. What reading I did consisted of going over the same sentence a few times, then falling back into my flu-like stupor, pinned to the couch or the bed or the floor until I had to pee. My kingdom for a catheter. Time changed back an hour and we were plunged into darkness. It was Halloween. It had been ten months and I was as sick as I was on the first day. I told Barbara I wanted to see the doctor they warned me against. His name was Anderson. I made the appointment and she brought me. I remember the day. We had to stop at Burlington College on the way to vote for something. I knew as I walked in and out that I was in a wholly different world, encased in a shroud of malaise and disease. I hated it. It hurt. I was dumb. We got to the doctors office and as he remembers it, from my chair in the examining room, my head fell onto the table as I was no longer able to remain sitting. The appointment was essentially with Barbara but I do remember the basics. First of all, Dr. Anderson knew what we were talking about, he was familiar with my symptoms and had seen it before. In my mind the heavens parted and choirs sang hallelujah! He started dropping the names of physicians I knew from my own research which told me we were on the right track and on top of it all, his own wife had experienced something very similar and with his treatment protocols was improved. This was good news. After ten months of being jerked around and dismissed by others, I found someone who had a definite sense of direction and a track record to boot. Yea team! (Francis would have cheered with me). We did the preliminaries and scheduled my next visit and the first IV. None of this was covered by insurance but that didn't matter. At a buck and a quarter a pop I scheduled this radical new therapy for three times a month. The object behind getting vitamins intravenously was to bypass the stomach and intestines so that the nutrients go right to the tissues that need them. People with CFS have notoriously poor absorption so that vitamins taken orally just pass through. My primary care physician had advised me against all vitamins. Go figure. Dozens of studies I had uncovered showed an overwhelming need for supplemental nutrition, for all people, for healthy people, but especially for those with immune system dysfunctions. Where was he coming from that he would deliberately steer me away from a potential cure for so long? Why did I have to wait ten months to find a doctor with half a clue? I guess that was just water under the bridge, and, like the proverbial spilled milk, I shed no tears. In slow motion I stretched my arms through the muck and the yuck, and pulling aside cobwebs to find the way, and with legs made of lead, I took my first few awkward steps toward recovery.