Wednesday, June 23, 2010

Nasty but Interesting Little Boogers

Imagine a bacterial infectious disease which can imitate 300 or more other illnesses, affect multiple organ systems at once, disseminate to almost all areas of the body, or move around to cause symptoms in any part of the body over a long period of time. Unlike many infectious organisms which can be easily be seen in the blood and in sites of infection, the bacterium that causes this disease is seldom seen in the blood and if isolated, nearly impossible to grow in a laboratory culture dish. This germ can generate widespread inflammation that causes excruciating pain and damage throughout the body but the inflammation is mostly invisible. With the exception of the well known “bulls eye rash” seen around a tick bite in about 30% of Lyme disease sufferers, there is little to no swelling, abnormal rashes, or pus formation usually associated with other kinds of infection. One of the blood tests commonly used to detect this disease is designed to pick up evidence of antibodies formed by the immune system in response to infection. Even though a person may be seriously ill with this disease, the blood antibody test is often negative because his immune system is not generating enough antibodies to be detected. In other words, his immune system is not recognizing the presence of an infection, and is not fighting it. It is not unusual for the sick person to not even have a fever.

The name of this unusual bacterium is Borellia Burgdorferi, a corkscrew shaped spirochete which resembles another bacterial spirochete responsible for the disease known as Syphillus. The Borellia organism is transmitted by the bite of several known species of ticks (most commonly deer ticks) and possibly other kinds of biting insects such as flies and mosquitoes. The disease is named after a town in Connecticut where it was first identified in the United States in the early 70s. Though generally assumed to be confined mostly to the Northeast and upper Midwest, Lyme disease is now appearing more and more frequently all over the country and is well on it’s way to becoming a world wide epidemic.

The Lyme spirochete is a nasty booger indeed. The corkscrew shape allows it to drill itself deeply into joints, muscles and nerves where it can hide from infection fighting white blood cells normally found circulating in the blood. Once deeply entrenched in these locales the spirochetes cause chronic arthritis (joint inflammation and pain), myalgias (muscle pain and weakness), neuralgias (peripheral nerve pain), brain encephalopathy (headaches, dizziness, mental malfunctions), and a form of meningitis (neck pain and stiffness). Lyme bacteria can also invade the heart, kidneys, respiratory system, digestive tract, and even the eyes. Because of its effect on the nervous and musculoskeletal systems, Lyme disease most frequently causes overwhelming physical and or mental fatigue, along with deep and widespread pain, the extent, variety, and intensity of which can be very difficult to describe.

I have put off writing this document for a long time because of my reluctance to risk coming across in a complaining spirit as I attempt to articulate my experience with the excruciating pain of Chronic Lyme disease. Never before in my life have I experienced pain as intense, as widespread throughout my body and in so many variations as I have since my Lyme disease got serious about a year and a half ago. Once I sat down to write all the qualitative adjectives I could think of describing the pain. I began with the usual—stinging, burning, shooting, aching, etc. and ended with the more unusual—gravelly, grinding, crawling, salty, smooth, electric shocking, chemical shocking, pulsing, vibrating—on and on. I got up to 35 variations before I ran out of adjectives and had to give up. There were still qualities of my pain that simply defied description. I had to find other ways to describe it—“Japanese beetles crawling across my eyelids”, “my head and face wrapped tightly with elastic tape to keep it from exploding”, “head feeling like a beehive”, “sensations of large wound scabs being pulled off my legs with adhesive tape”, “barbed wire strung through and wrapped around every muscle in my arms, legs, and torso and every time I moved something was jerking it”, “a huge invisible elastic sock covering the lower half of my grit covered body, squeezing it until the grit ground through my burning skin”, ”arm, rib, and skull bones feeling like half healed fractures”. Sometimes when I felt random stinging sensations under the skin in widely dispersed areas of my body, it became easy to visualize those corkscrew shaped spirochetes drilling their way through nerves and muscles. When one puts this perspective of pain up against the oft asked question in hospital emergency rooms—“Describe your pain on a scale of 1 to 10, one being no pain and 10 being the worst pain you have ever had”, it all sounds so very stupid!

One of the more interesting and insidious characteristics of the Borellia organism is its ability to change from the spirochete (cell wall) form to a cell wall deficient form (sometimes called an L-form). The cell wall deficient form is more resistant to attack from the body’s immune system and antibiotics which may be thrown at it. There are several classes of cell wall destroying antibiotics (generally the penicillin and cephalosporin derivatives) which if used, may cause the infection to worsen and become more difficult to treat because of the spirochetes’ capability of morphing into the cell wall deficient form in order to escape the antibiotics’ effect. For this reason, antibiotic treatment of Lyme disease may need to be applied selectively and strategically over a longer period of time than is recommended for many other infectious conditions. The other form taken by the Borellia is a cyst form which is nearly impossible to kill with antibiotics. The cysts can lie dormant in body tissues for months or years and immerge later as an active cell walled or cell wall deficient form and cause a relapse long after antibiotic treatment has stopped.

Some of the most recent and “cutting edge” research of Lyme disease has revealed other interesting characteristics of these evil critters. Lyme spirochetes are now believed to be capable of screwing themselves into lymphocytes and phagocytes (white blood cells), converting to cell wall deficient form, and combining their DNA with the DNA of the white blood cell. This means in effect that the infection fighting capacity of the white blood cell has been hijacked and that the white blood cells now become antagonistic and confused into attacking healthy tissue. This may be an explanation of why chronic Lyme disease often appears to behave as an autoimmune disease like Multiple Sclerosis, Lupus, or Rheumatoid Arthritis. Other leading research has uncovered evidence that another escape tactic used by Borellia organisms is to form biofilms within body tissues. Biofilms are clumps or congregations of the infectious organisms with cell wall deficient or cystic forms in the center of the clump and more active spirochetes on the outside. Killing them is in effect like peeling an onion. Pulsed application of different antibiotic classes over an extended period of time combined with drugs designed to break up or inhibit formation of biofilms, and various herbal and or nutritional supplements intended to modulate the immune system are being found to be the better approach to dragging down this vicious enemy.

Currently there is major controversy raging within medical circles about how to most effectively diagnose and treat this horrible disease. One side says that Lyme disease is rare in most areas of the country, and is easy to identify and treat. The other side says that Lyme disease is a very complex illness to diagnose and treat, widespread throughout the country and world, and is on the increase. Research is still being done and much is yet to be learned. Currently there is no laboratory test considered reliable enough by its self to rule out or confirm a Lyme disease diagnosis. Too many doctors are misdiagnosing Lyme disease sufferers with labels such as “Chronic Fatigue Syndrome”, “Fibromyalgia”, or “Anxiety Disorder”. Some doctors appear to not be recognizing the existence of chronic Lyme disease because they fear discipline by medical review boards if they exceed the inadequate treatment guidelines handed down by CDC (Center for Disease Control) or IDSA (Infectious Disease Society of America). Many health insurers refuse to pay for extended antibiotic treatment of Lyme disease considered necessary by LLMDs (Lyme Literate Medical Doctors). Other doctors appear unwilling to spend the time and energy to do the medical detective work necessary to properly diagnose and treat suspected Lyme disease. It is easier and more profitable to deny Lyme disease and to send patients back out their doors with prescriptions for palliative medications. Meanwhile there are possibly hundreds of thousands of sick and confused people in this country, undiagnosed or misdiagnosed, and suffering in desperation.

This is nothing less than a huge moral travesty! It is not right! Both patients and doctors are falling through the gaping holes in this country’s hopelessly broken and dysfunctional health care system. It has got to be fixed! As an individual I feel so small and inadequate to consider taking on this monster. But I am going to try. I will begin by joining local support groups for Lyme disease, MS, and Fibromyalgia. There already is talk of arranging an informal neighborhood picnic where a few doctor friends will be invited. Gently and thoughtfully we will breach the subject. At some time a couple of persons’ stories of struggle and recovery from Lyme disease will be published in the local newspaper. Sound scientific research on Lyme disease has been done and is still forthcoming. There are doctors out there who care and who will likely come through if given a little encouragement. We will overcome with God’s help and direction.

Monday, February 08, 2010

It Doesn't Happen Very Often in Virginia But All of Us Old Timers Know It Can

Virginia has always been not only my home but one of the more interesting states. Most people know Virginia as one of the most significant states of the confederacy where most of the major civil war battles were fought. Located south of the Mason-Dixon Line, Virginia is part of the southeastern quadrant of the United States—a land of extensive pine forests; paw-paw patches; tobacco and cotton fields; friendly if they know you, coon hunting, beer drinking, laid back country folk who speak with a funny “suthun akceeunt” ; and a place where the winters are-uh- usually mild. The western side of the state extends into the Appalachian mountain ranges and valleys where the elevation is a little higher and the climate a little colder than the rest of the south but generally not nearly as cold as way up “nawth wheyuh dem yaan-keees leeuv.”

Our winters are usually characterized by 3-5 inch slushy snows which melt off in a day or two or those wintry mixes of SS&FR (snow, sleet, and freezing rain) which come about once a week. Between this it is not that unusual to have short shirt sleeve days even in the middle of January.

Yet I remember hearing as a child stories told by older folks of snow so deep it was over the fences. Now that I am rapidly moving into that “older folk” category, I too can tell similar stories to my grandchildren. There was the “blizzard of March 6-7, 1962” when around three feet fell and paralyzed the Shenandoah Valley for a week. In 1966 we got a 14 incher on a Saturday, six more inches on Wednesday, and another foot the next Saturday plus a hard blow for the next two days which pretty much packed full the 5-6 foot deep trench created by the snow plows earlier in the week on the road through our farm. My dad and about four of my brothers spent a whole day with a medium sized tractor with a rear mounted blade and several grain scoops shoveling out the road so we could get a tanker truck in to pick up our overflowing milk. I still vividly remember the truck high snow banks scrubbing both sides of the truck as it squeezed through.

Since we have moved to Glen Eco Farm we have seen at least two 18 inch snowfalls and the most memorable 30 inches that marooned us in 1996. Christine was stranded in town for a couple of days that time and we ended up walking our recently acquired herd of about a dozen Hereford beef cows the ¾ mile down the road to the empty barn at the farm where we used to live because I couldn’t get hay to them at home.

After about five years in a row in which we hardly had a snowfall worthy of a good snowball fight, the winter of 09—10 has proved it’s mettle in cold weather and heavy snow. Early December brought us a nice six inch fall. On December 18-19 the “blizzard of 09” rolled through Virginia and left two feet at our place as Christine and I floated through the Louisiana bayous and strolled the beach on the Mississippi gulf coast. We came home to knuckle whitening cold for the next two weeks and a good melt off and a three inch rain with local flooding in mid January followed by two nice snows (six inch and four inch respectively) towards the end of the month. Then it happened again!

I was glad I respected the weather forecasts on Thursday February 4 as I pushed myself through the pain of Lyme disease to wrestle two large round bales up the steep snow covered hillside with my big tractor and after a lot of spinning and sliding, I finally managed to dump them into the hay feeder wagon parked along the edge of the woods on the upper side of the upper hayfield. This would give the cattle more than a week’s supply of hay and nearby shelter in the woods if another big snow comes.

All day Friday and Saturday it snowed—and snowed—and snowed! Boy was I ever glad I didn’t have to be out slogging around in a manurey barnyard, climbing silos, and milking cows. It was nice to have Bud Driver around to do some driveway scraping with the Ford tractor before the snow got too deep and to tend the chickens the farthest distance from the house. I did have to venture out to carry a few buckets of feed and water to the young chickens behind the greenhouse and to pull snow off the one standing hoop house. One of the church neighbors appeared Friday night and again on Saturday afternoon with his new Kubota 4WD tractor to open our driveway. I think he was having fun. A sensible estimate would be that we got a good two feet of new snow. Some people not too far from us claimed that we got 30 inches of course. I just know that when I walked out in it, it was up to my knees and my knees are a little higher than the average man’s.

It was awfully nice to be able to slip back into the house, stomp the snow off my boots, flop into the lazy boy recliner, flick on the floor lamp, read a nice nature book written by an Amish farmer with a passion for bird watching, and to watch the falling snow through the picture window.

Tonight I checked the weather forecast and another winter storm warning is up for Virginia. They are calling for up to another foot around here tomorrow and Wednesday.

Sunday, January 17, 2010

Trotten Hard Cider at School

The last two stories I posted here were on the subject of illness. I have been wanting for some time to post some stories from my past and get away from this subject but somehow the theme of illness crept into this one too. However there were no doctors involved and telling it from the perspective of forty five years later gives it a considerably different spin. I hope the reader will enjoy reading this one as much or even more than I enjoyed writing it.

Every year as the days get shorter, the kids go back to school, the air gets that invigorating and nippy coolness commensurate of autumn in Virginia, and the harvest season begins its downward trek towards the dead and delightfully dreary doldrums of winter, my thoughts invariably go back to the days of my childhood when—sooner or later, Dad would gather up a half dozen or so glass gallon vinegar jugs or better yet, the old 20 gallon oaken vinegar barrel, and have them filled with fresh pressed apple cider at the local mill.

Apple cider in those days was not like the pasteurized and sometimes syrupy apple juice currently sold as cider since the USDA successfully instilled in the minds of the American public the fear that a little deer poop in the cider might make it lethal for little children. Deer poop or not, unpasteurized apple cider contains sufficient bacteria to give it that distinctive flavor that marks it as real cider several days to a week after it has been pressed. A real apple cider connoisseur will of course immediately recognize the superior taste of the fresh unpasteurized product and how a few days of aging will make it even better.

We were a large family of seven boys and one girl so it didn’t really take that long to put down five gallons or more of fresh apple cider before it “went too far”. “Went too far” of course, was that vague designation of cider that had either gotten to taste too much like vinegar or had developed enough alcohol content to “knock you on your butt” if you drank too much. We were a conservative Mennonite family which had grown up with the dictum that “a tablespoon of wine or rum used to flavor a fruitcake” was absolutely verboten! But somehow good Mennonite church going folks like us could get away with occasionally having a stash of slightly hard apple cider in the cellar or the back shed. It never really occurred to us that cider that had not been completely cleaned up in a week’s time and had gotten to that fizzy and yellower stage, most likely had an alcohol content equal to or greater than most beers. Never mind, frugality was enough a part of our culture that we must not throw it away. If the delightfully aged cider was in a glass jug we usually went ahead and drank it up. If it was in the barrel we would drink it as long as we thought it was safe and then leave the rest to go to vinegar. This was the stuff I really liked!

It was Halloween night in the year 1962. Most of us boys were into our teenage years and I was in the ninth grade. That was the year that Dad had decided to drag out the wooden keg which had been stored behind the kerosene tank in the cellar and have it filled with cider. As best as I can recall we had already gotten cider in glass jugs for drinking and his intention was to allow the cider in the barrel to go to vinegar. Unbeknownst to him sometime during the several years while the keg was in storage next to the kerosene tank someone had spilled some kerosene onto the keg while filling the tank. The kerosene had soaked into the wooden container and as the cider gracefully aged it acquired an interestedly different flavor.

I don’t know who had gone down to sample the cider but apparently they had noticed the off flavor and had brought the keg up from the cellar to the back porch. I do remember several of my brothers complaining about the funny taste and entertaining some discussion about whether or not we should consider throwing it out. I could taste a little kerosene but it wasn’t that bad. Otherwise the cider was at the perfect stage of fizz and bite and I didn’t really mind the extra flavor. So that evening as I did my algebra homework, I kept on going back to the back porch and getting myself another nip.

I crawled out of bed the next morning at the usual early hour of 5:30 AM and helped to do the chores of feeding and milking the 40 head of dairy cows. Then I came in and wolfed down the usual breakfast of two eggs and toast, three or four pancakes, and a big bowl of cereal washed down with another glass of my beloved cider, and dashed off to the school bus.

The first class of the day was in the woodworking shop, my favorite. I was at the wood lathe thoroughly engaged in transforming an old discarded bowling pin into a nice table lamp. I hardly noticed when sometime near to the end of the class period a little jab of pain shot somewhere down in my lower guts. Now farm boys usually don’t get excited about such things so I just went on to the next and least favorite class, Algebra I.

It couldn’t have been more than ten minutes after settling into the algebra class that a much stronger pain surged through my innards and reminded me that all of that cider I had been drinking might have something to do with it. When an even harder pain hit about five minutes later I stared at the minute hand on my watch (showing twenty minutes after ten) and realized that this thing just might get serious!

As I looked around the room I began to realize the predicament I was in. Being the shy boy that I was, I had always chosen the desk in the farthest corner of the classroom from the doorway to the hall, at the back of the room next to the windows. To make matters worse, the school had recently made this stupid rule requiring anyone needing to leave the classroom during a class session for any reason to secure a pass from the teacher in the form of a wooden paddle on a leather thong with the room number engraved on it. Upon granting permission to leave, the teacher was to give the student this paddle which was to be carried with him all of the time he was out of the classroom and returned when he came back.

As I contemplated the real possibility that I might have to make a dash for it before the end of the class, I realized that had I been smart enough to choose a desk near the door I could have been out and gone before anyone knew what was happening. Now I would have to run to the front of the room, and cross over by the teacher’s desk in front of the entire class in order to make it out the door. I wasn’t about to stop and explain to the teacher in front of all my friends why I needed to leave the room so urgently and to get that dumb paddle! So my only alternative was to scrunch and squirm and hope that I could hold it til the end of the class.

As the pains kept getting more frequent and stronger I bore down with ever more determination until that blessed bell finally rang and I was up and out of there like a rocket off a launch pad. I fled down the hall to the first boy’s room which seemed like about a football field’s length in distance, but the instant I opened the door I realized that luck was incredibly in my favor.

Right straight inside the door from the hallway was a row of toilet stalls. Some hoodlum had seen fit to rip off the privacy door to the toilet stall nearest to and facing the hall door. Evidently whoever had done this deed had thought it would be really cool to be able to enter from the hallway and to get a direct visual shot of someone on the loo as soon as they opened the door. Little did that hoodlum know that he had done this favor just for me. All I needed at that instant was the path of least resistance provided by that open stall. I was hardly through the hall door until my body was into a reverse spin and my pants were a falling. In the same nanosecond that my bare bottom touched the seat, what felt like a big wet cork the size of a baseball exploded from my nether end.

A minute or two later the hall door opened again and two guys came in and began lighting up cigarettes. One in particular swaggered in sort of an Elvis Presley like style directly in front of me as he held his weed between thumb and first two fingers with the last two fingers extended. He would glance at me occasionally out of the corner of his eye as I sat there totally involved in blowing out the rear and trying my best to ignore him. After about five minutes or so they finished their smoke and left. I remained on the pot, continuing to purge as long as I could, and finally as the bell rang signaling the beginning of the next class, I decided that it was now safe to get up and go. I sneaked into the next class, a little bit tardy but unnoticed.

Once more about ten minutes into the class period the pains returned with a vengeance and I found myself again surveying my emergency escape plan. I was in the same dire situation as before—sitting near the back of the classroom and in even deeper trouble. I knew that I had already blown the first plug and that the possibility of a really serious accident now loomed more eminent than ever! This was Miss Driver’s third period English class and she was really cranky about enforcing that room paddle thing! If I didn’t make it through this crisis there would be no way that I could ever live this thing down! Don’t ask me how I ever made it to the end of that class period! It had everything to do with a shy 14 year olds shear determination to avoid getting into an unimaginably embarrassing situation, no matter what.

The final bell rang and I shot out of the room again, this time deeply grateful that I was only a door or two up the hall from that wonderful boy’s room with the open fronted toilet stall that had served me so well less than an hour earlier. I made the much shorter dash and made the same landing on the same pot. About a minute later just as I was really “cutting loose” the hall door opened and right on cue my two smoking friends walked in again. The one who swaggered like Elvis stopped bold in his tracks, his mouth fell open, and with eyes as big as saucers, he stared straight at me and gasped. “Have you been setten thur since I was here last time? Gaw wood die-eee-yum! You mus reee—uuly have thuh sheee—yuts!”

The next period was lunch hour followed by home room study hall. I dared not eat lunch that day and I made darned sure that I knew exactly where the doors to the boy’s rooms were as I walked to the remainder of my classes. By now getting through the classes was not nearly as bad, but I did have to continue making “the dash” at the end of every class. By the time the final bell rang dismissing classes at the end of the day I made my last trek to the BR before getting on the bus. I was then good for the 45 minute bus ride home plus the quarter mile walk down the side road from the bus stop to our house before going inside and giving it my final shot for the day. By then I felt thoroughly cleaned out and I couldn’t resist getting off the stool and peering into the bowl. What I saw there looked a lot like what one would have blown out his nose with an average cold. I knew that I was on the road to healing.

I never remembered what was done with the remainder of that kerosene tainted apple cider.
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Tuesday, January 12, 2010

End of Year 2009 to Family and Friends (Jan 4, 2010)

This past year has been an unusual one filled with a mixture of good and bad news, joy and pain, anticipation and disappointment. I will begin by sharing the positive things first, then the bad things. I feel badly about writing about the pain but it was a big part of my life this past year and can’t be simply passed over and ignored. Hopefully out of the difficulties will come blessings which will touch others and spare them some of what I have been through?

Despite periods of drought and one late freeze the market gardens produced bountifully except for a few of the minor crops.

We successfully grew three good crops in succession in one 690 square foot high tunnel (unheated greenhouse structure). I transplanted a variety of lettuces into the tunnel in mid March and had good quantities of top quality lettuce at the market by mid April. I had seeded carrots between the lettuce rows as they were transplanted and there was a wonderful crop of carrots coming out by mid June. The middle row of carrots on each side was harvested first and that space was immediately filled in with late started tomato plants which yielded most of their crop in October and even a little into November.

Normally the open field tomato crop is finished by late September. Considering that the area covered by the high tunnel was not large, (enough to park four average sized cars bumper to bumper) that translated into a tremendous amount of production per unit of area.

In 2009 I made good on my promise to try grafting of tomato plants and was partially successful. The grafts that took went into the high tunnel between the carrot plants in mid June and granted me bragging rights on good quality heirloom tomatoes at the market in mid October.

We were blessed this year by the presence of a top notch intern (a college friend of our son Hans) who supplied bounteously the energy that I didn’t have for working the farm. He even tackled (and finished) during the fall, the stone veneer job on the basement walls of the house, including putting down the slate on the south end patio. He also gets the credit for procuring a couple of borrowed incubators and hatching a batch of chicks which are now growing in the garage.

Both the blackberry and raspberry crops produced exceedingly well thanks to relatively dry weather during their bearing seasons and functional drip irrigation. Also the muskmelons ripened during the dry weather and, thanks to the walk in refrigerator, were mostly successfully marketed. The ones that over ripened or didn’t quite make the cut were either turned into nice orange yoked eggs or deposited into the neighbor’s mailboxes. Those who thanked me graciously for the first one, got one or two more.

We didn’t flub on winter squash this year and (believe it or not) the cauliflower--which did not look as good coming out of the greenhouse as last year’s crop--and then socked into the rows of a weak stand of edamame soybeans, still came through and produced a decent crop. We started getting rain after the cauliflower plants were in and soybean seed which had not germinated during the previous month of dry weather came up and nearly choked out much of the cauliflower. Fortunately we were able to harvest out enough of the earlier germinated beans in time to keep the cauliflower going. A little later we landed a deal with a newly opening white cloth restaurant in town to buy a regular supply of fall cauliflower, broccoli, potatoes, winter squash, Chinese cabbage, Japanese turnips, mizuna, and arugula through December.

Now for the bad news!

After a full year of alternating persistent and acute suffering, beginning with dizzy spells, panic attacks, extreme fatigue, and chest pain--progressing to peripheral nerve pain--and then going on to wide spread muscle pain, weakness, and cramping accompanied by frequent headaches, I was clinically diagnosed with chronic late stage Lyme disease by a Lyme literate doctor in Rockville MD on December 29, 2009.

I now realize that the illness had most likely begun with mild symptoms several years ago and had begun to get more serious by December of last year when I first presented for medical consultation. There followed several trips to the local hospital ER and a three day hospitalization in mid February. All of the heart diagnostics offered by the hospital, several chest X-rays, a CT scan, brain MRI, two brain EEGs, and two pulmonary function tests, along with several urine and blood tests were done throughout the year. In August a hair sample test revealed evidence of heavy metal toxicity and I underwent 12 weeks of EDTA chelation therapy treatments. I saw a string of specialists including an internal medicine specialist, a heart specialist, an allergist, a pulmonary specialist, and two neurologists, all of whom could make no specific diagnosis and tried me on a variety of drugs intended for symptomatic relief. None of them worked with significant effect.

The MRI (done in March) was the only test done which revealed possibly significant abnormalities (scattered bright spots in the brain) and the report included a prompt to evaluate for possible multiple sclerosis or Lyme disease. The first neurologist denied MS and ordered a basic blood test for Lyme. When that test came back negative I believed him and trusted his declaration that Lyme could be ruled out on the basis of the test results. Seven suffering months later I read a magazine article about several persons’ experience struggling with Lyme and learned that standard blood tests for Lyme usually come back negative for persons who have had Lyme for an extended time and do not serve as a reliable diagnostic tool. It was at this point that I suggested to my primary care physician that it might be necessary to revisit the Lyme disease issue. A follow up search in the following weeks on numerous internet sites relating to Lyme disease, plus an opportunity to briefly pick the brain of one doctor outside of a consultation, supported the ideas that there are few if any accurate diagnostic lab tests for Lyme and that there is an apparent scarcity of doctors (including specialists) who are truly knowledgeable about the diagnosis and treatment of this complex disease once it has gone beyond the early stages. My primary care doctor supplied me with a reference to the doctor in Maryland who saw me last week. That doctor has ordered expanded tests not only for Lyme disease but also for several other infective bacteria known to be transmitted by the tick that transmits Lyme, and for various other specific blood chemistries affected by Lyme. In the event that these tests should fail to nail down the diagnosis, he will then fall back on the initial clinical diagnosis based on my symptoms and my response to treatment which has already been initiated. My prognosis at this point is fairly hopeful but the process of recovery will probably involve several years of treatment and will be expensive.

Neither I nor anyone else should ever have to go through the kind of suffering I have endured for the past year because there seems to be no doctors in this area who know about or are even interested in learning about the proper procedure for diagnosing and treating Lyme disease. There is mounting evidence that with deer populations (and the ticks that infect them) increasing in populated areas all over this country and the world, that Lyme disease has the potential of becoming a major pandemic. There needs to be increasing awareness of this problem both within the public and the medical sphere. I feel a strong need to work at channeling my anger at the existing local medical establishment towards connecting with others who may be affected by or who are already struggling with this illness by forming a local Lyme disease support group which can spread public awareness and perhaps work in a more positive way to attract Lyme literate doctors to our area or even to encourage doctors who are already here to learn more about this illness. I hope to be able in the coming months to get my story well enough written to have it published in the local newspaper. I purposely desire to avoid lashing out at the doctors or the system which so grossly underserved me.

I now depart from farther writing about this unsavory subject to share the news that in December Christine and I traveled as far west as central Texas to visit friends and her sister and husband near the city of Waco. On the way we toured an Appalachian folk art museum and visited a dulcimer shop near Ashville, NC. On the return we passed through southern Louisiana to enjoy a boat ride in the bayou swamps and to taste some Cajon food, then on to the Mississippi gulf coast to the areas struck by hurricane Katrina several years ago. About this time we got the exciting news that our neighbors were digging out of more than two feet of snow at home. We returned through Alabama and Georgia to visit a few more of Christine’s relatives before getting home on Christmas Eve. We had talked of going as far as Arizona to visit the Grand Canyon and relatives in that state, but gave it up when things worked out for the doctor appointment in MD on the 29th. I didn’t feel comfortable for much of the trip but I tried to make the best of it.

I cannot honestly say that I had a very merry Christmas as I spent much of that day lying around the house in deep pain. However, that is OK for I am thankful to be alive, that there are family and friends who support me, that it does not appear to be something really serious like cancer, MS, or ALS, and that there is hope for recovery. My journey through illness in 2009 has been like getting lost in the wilderness. After following several trails which lead nowhere, one finally finds what appears to be the right trail. He is still in the woods, and the trail out may be steep, rough, and long, but knowing that this one may eventually get him out, keeps him going.

We look forward to the coming year with anticipation. Our son Hans will be coming home in March from two years of living and working in Paraquay. I’m sure he has grown a lot through this experience and both of us are delighted that he has expressed some interest in helping us to run the farm, at least for awhile. I for one intend to bend over backwards to make room for him to work with us comfortably and to become actively involved in management and decision making. There will most likely be some serious talk about how to go about arranging for a smooth and successful transition of the farm management and ownership from us to him (or another person). This is both exciting and a little scary at the same time.

When one begins to peel away the layers of silliness, superficiality, triteness, overindulgence, and crass materialism surrounding the way so many celebrate Christmas, he eventually gets down to that wonderful story of a not really high class couple who traveled over a long distance into a crowded city to attend civic duty. Mary arrived in Bethlehem very fatigued and in much pain with a baby soon to be born. The prospect of even finding a place to lie down looked bleak. But God was behind that scenario and out of it all came songs of angels and a King who offers us forgiveness and the hope of eternal salvation.

May God take care of all of you in 2010.

PS. I have just learned that there is a Lyme disease support group in our area and I plan to begin attending their monthly meetings this coming Saturday.

Monday, March 02, 2009

How Could I Have Been So Sick When the Tests showed I Was So Healthy?

The story I am about to write is one that almost didn’t get written! It is a story about illness. I do not like illness! I do not like to hear about illness! I do not like to talk about illness! I do not like to read about illness! And most of all I do not like to write about illness! The only reason I am trying to write now is that I have heard from a few people that have told me that I need to write about my recent struggles with environmental illness. It will be an excruciatingly painful and difficult task. I hope the pretty picture serves to diffuse somewhat the pain of what I am about to write.

What is environmental illness? Environmental Illness (EI) is a multifaceted illness characterized by a long list of symptoms affecting multiple body organs and systems. Triggers for EI are almost too many to count including a broad diversity of mycotoxigenic molds, plant pollens, animal danders, and other airborne dusts normally associated with common allergies, and the inexhaustible list of synthetic and toxic manmade chemicals which permeate our modern world. These things are found in the walls and floors of the buildings where we live and work, in the upholstery of our furniture, in the clothes we wear, in the air we breathe, and in the food we eat and drink. Many people slather copious amounts of toxic substances on their bodies and in their hair to mask odors, and they swallow toxic drugs to ease their pain. More toxic substances are used in our germ fearful culture to sanitize our surroundings. Toxic volatile chemicals emanate from the machines we work with and the vehicles we ride in. Little research has been done to effectively evaluate the impact of frequent and multiple long term low level toxic exposures on human health.

One of the most frustrating aspects of environmental illness is its diffuse nature: multiple symptoms which can vary tremendously from person to person and from time to time, and an often nebulous sense of what the triggers are and where they are coming from. The more common symptoms themselves—fatigue, dizziness, weakness, depression, anxiety, an indefinable sense of “just feeling bad” can apply to a broad range of illnesses and, of themselves, do not lead to a definitive diagnosis. Batteries of diagnostic tests can be done on persons suffering from environmental illness which show no or little evidence of organic disease. Therefore there are few doctors, who are knowledgeable of or interested in environmental illness and, on the basis of their medical training, are inclined to write off such cases as persons who are suffering from a psychosomatic illness and are in need of psychiatric treatment. Believe me! I have 20 years of experience with environmental illness under my belt and I am not about to believe any doctor who tries to convince me that I am merely mentally ill!

According to recent estimates, up to 15% of the American population could be suffering from some forms of environmental illness. Following is a list of frequently misdiagnosed illnesses which can be linked to environmental exposures:

Allergies of all sorts
Chronic Fatigue Syndrome
Clinical Depression
Cold extremities
Emotional instability
Fainting and(or) dizziness
Heart arrhythmias and (or) tachycardia
High blood pressure
Irritable Bowel Syndrome
Frequent colds and flu
Lyme disease
Memory loss, confusion, inability to concentrate
Panic Disorder
Respiratory distress
Recurrent infections
Post Menstrual Syndrome
Reactive Hypoglycemia
Sleep disorders
Zoloft deficiency

I have tried to be fairly accurate with my listing of these illnesses which can be linked to EI but recognize that some of this information could be challenged as I recognize that I am not a medical expert. I have personally experienced many of these conditions and been misdiagnosed and medicated for some of them. My heart goes out to the thousands of persons who are, as I write this, being treated symptomatically for illnesses or conditions which could be resolved if the roots of their environmental exposures could be recognized and properly dealt with. This is my real reason for undertaking this difficult writing.

I will now summarize as briefly as I can my past and more recent journey through environmental illness.

Beginning in the early 1980s and continuing into the 1990s I suffered through several acute episodes of mold induced hypersensitivity pneumonitis and later chronic mold and chemical sensitivities which culminated in a four day hospitalization in late 1991 and my decision to liquidate a dairy farming operation.

In the years since 1991 I have repeatedly developed chronic mold and later chemical sensitivities during the winter hay feeding months resulting in respiratory discomfort and chronic fatigue symptoms. I have tied to resolve this by becoming more vigilant about wearing breathing protection while handling hay..

In the past month I experienced a three day hospitalization following several weeks of daily episodes of extreme weakness and fatigue, dizziness, respiratory distress, and sensations of shock radiating throughout my body. I suffered intensely through this time and experienced days of near total disability. The reasons for the several trips to the hospital emergency room and several days admission was to check out possible heart related problems. Most of these tests were negative or revealed minor abnormalities. We think that I may have experienced significant mold and bird dust exposure during the month of January while daily tending a small flock of chickens in an out building and some chemical exposure while repairing and refinishing a few pieces of small furniture. Though I thought I was using adequate breathing protection while feeding hay to livestock, this may need to be evaluated also. I am currently undergoing follow up diagnosis and treatment with a new doctor who seems to have a much more open attitude towards my illness and a desire to get to the root of the problem.

I am deeply grateful that medical tests done so far reveal that there is as yet no evidence of serious damage to my heart and lungs and that there is good hope that the neurological symptoms, as intensively distressful and frightening as they were, will resolve as my body heals. I am also grateful for the quality care given to me during the hospital stay and the financial assistance given by the hospital to defray some of my expenses. Things could be a lot worse.
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Friday, February 06, 2009

Five Reasons Why I Garden

Every once in a while I come across something someone has written that expresses my passions and philosophy more eloquently than I can ever hope to articulate here. Therefore I feel that it must be shared on this blog. The author of this essay was one of my farm subscribers last year who worked for part of her CSA share. One of the joys of operating a CSA farm is the realization of the truth that my farm and my business belongs, not just to us, but also to those who become actively involved, either as work share participants on the farm, or as volunteer help with the annual CSA organization process. Something similar can also be said on behalf of those who support our farm in other ways with their patronage. Without their contribution, the successful operation of this farm would probably be impossible. When I include the thoughts and words of others as a part of my blog, the blog becomes not just mine but theirs also. I like to think that when I include their contributions, the blog becomes that much the better than it would be if I was trying to do it all myself.

Five Reasons Why I Garden
by Anna Maria Johnson

I am not a gardening expert. I am, in all honesty, a fairly lousy gardener! But I do work at it, and if my actual garden fails to measure up to the orderly, weed free, and well mulched cornucopia of abundance imagined in my head, there is probably a good lesson in there somewhere.

Here are five good reasons to garden.

Peaceful Protest:

Gardening is a peaceful protest—my response to all that is ugly in the world; all that is cheap, easy, and gas guzzling; all that comes wrapped up in plastic after being shipped 3000 miles across the planet; all that causes cancer, social injustice, and oppression.

I am powerless to end these things myself on a global scale, but when I set my shovel down on my small plot of earth, I declare, “In God’s name, not here! Not in my back yard!”

Gardening keeps me hoping. It often delivers on its promises, such as the summer when our Tarahumara sunflowers reached mythological heights. In autumn we feasted on squashes and late harvested vegetables, and during the winter my fifteen quarts of salsa nourished us and warmed our tongues.

Gardening is, by its nature, grounding. There is nothing like physical work with our hands to bring comfort in times of disappointment. Anger can be a force for good, giving my measly 103 pound frame an extra punch as I throw my weight upon my shovel and churn up the dirt.

Digging is hard. After a couple of hours, dirty, sweat-soaked, and stinky, I feel cleansed. I ache with a good kind of ache.

To grow a garden is to marvel at creation. I drop tiny brown wrinkled things into the ground and every time I feel surprised when something eventually sprouts. I get so excited that I call my children and point to the tiny dicot leaves.

“Look, our food is growing!” I say.

We stoop down to admire its tiny new life, its persistence, its goodness.

Finally and most importantly, I garden for love. I love digging and the smell of rich earth. I get a kick out of compost—nothing wasted, just re-allocated, renewed, and regenerated. No death is so great that it cannot serve yet another life, another body. I am forgiven for letting those vegetables sit in the fridge until they rotted. Worms, soil, and detritus work together to make yummy vegetables and beautiful flowers. Gardening makes me strong, healthy, and whole. It is a relationship of reciprocity—I feed the garden and the garden feeds me. The food that the garden gives to me is physical, tangible, and tasty but it is also spiritual.

Gardening helps me to love God, who becomes less of an abstract theological construct and more the Surprising, Creating, and Sustaining force that I really do believe in.

The fruits of the garden nourish those I love—family, house guests, neighbors, and friends. Eating home-grown produce together is love in tangible form.

Anna Maria Johnson lives and gardens with her family near Broadway, Virginia.
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Sunday, January 11, 2009

What Does It Feel Like to be an Old Man?

A few weeks ago I quietly joined the ranks of that segment of our population identified by a variety of monikers—senior citizens, the elderly, old folks, geezers, etc by passing my 60th birthday. I remember when my dad had his 60th birthday roughly 30 years ago. One evening as I was milking the cows I answered the phone to find one of my aunts on the other end. Expecting my dad to answer, she yelled brusquely into the phone, “How does it feel to be an old man?” My dad had a gravelly voice which I could have easily faked and I have always regretted not playing along with her a little and having some fun.

Sometimes I like to reflect back on my life journey. When I entered first grade at the age of six I began to think of myself as a “big boy”. Seven years later I became a “teenager” and that coincided closely with entering high school. I missed the next common rite of passage of most teenagers—“getting their beer license”, as I didn’t start drinking at the age of 18. I didn’t have my first date until past 20 and somehow never thought of that as a significant marker of transition in my life as some of my peers were already married and having children. I did become aware, however, that somewhere in the distant future I would hit the age of 30 and become a hopelessly old fogy. I married at 28 and of course I saw that as a very major life changing event. The same also goes for my becoming a father two years later. I had just passed 30 then and no, I did not yet feel like an old fogy. The next ten years flew by ever so quickly and there I was looking at the big “four oh”, the boundary line in life (or perhaps the top of the mountain) where one crosses over from youth into middle age! From then on, the sages say, “It is all downhill!”

It did indeed feel like my life started going downhill as I entered the 40s seeking physical therapy treatment for chronic back problems and, a few years later, I began a gradual descent into a vaguely defined environmental illness which expressed itself in a manner similar to chronic fatigue syndrome. Fortunately, as one grows older and his physical capacities begin to wane, another force, the accumulation of hard won wisdom, is kicking in and that helps to level out the descent. By that time I had learned that I was strong enough to injure myself, that it really is a good idea to eat healthy foods and to protect oneself while working in dirty or toxic surroundings, and that it makes a lot of sense to work smarter instead of harder. By applying some of these principles, I eventually found the downward slope becoming more gradual and less slippery and at times even ascending a little once again.

It has now been 20 years since I crossed life’s summit and mathematically speaking that works out to half of the time it took for me to get to the top. That means I should be half way down by now! Something inside me yearns for the hope that I will get to stay high up on the mountain to work and to enjoy the view for a good while longer and that the best way down will be to drop off a cliff when the time is right.

So back to the question that was popped to my dad 30 years ago and was mine to field at a time when I perceived myself very much a youth, “What does it feel like to be an old man?” Well, I could begin by mentioning the various kinds of “itis” that seem to constantly pop up somewhere in my body all of the time or to hang around like mosquitoes or deer flies on a muggy day. It’s kind of like farting. Some people seem to get a certain pleasure out of yammering about their aches and pains just like they do--well you get the idea! But it is best not to do it any more than you have to because most people would rather not hear it anyway.
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