Penning Thoughts

July 29, 2003

I was a happy and fit 57 year-old in July of 2003. I’d lost 125 pounds and was in the third year of my recovery, enjoying the best physical and mental health of my life. That soon ended when I found a tick on my ankle. It was the evening of July 29,2003.

On that Tuesday, after returning home from work, I was changing my shoes and noticed a black spot just below the top of my sock, on the outside of my right calf, near the ankle.

It appeared to be either a mole or a piece of dirt and I began to pick at it. Then I thought I probably shouldn’t, because a mole should not be toyed with. But the dark bump began to come loose, so I continued to pick it off my leg. When I had it off, I held it up to my face and then noticed the squirming legs of a tick.

I tried to crush it, but could not. It was about the size of a pencil eraser and appeared to be light-to-dark brown on top with what may have been spots.

The tick concerned me, but not enough to seek any kind of treatment. I had no pain associated with it, nor any itch.

August 2003

Three days later, on August 1, I awoke with a terrible head and neck ache, along with general pain throughout my body. I remember thinking about meningitis, because of the intense pain in my neck. I spent most of the day in bed, curled almost into a fetal position, because the pain was so severe. That lasted all day Friday, but I was fine the next day.

Because of my neck pain on Friday, and knowing I’d been bitten by a tick, on Saturday morning I called the HMO we used via my wife’s employer. We were told to come to urgent care facility for an evaluation, because my complaint involved a tick.

I brought along the dead tick, which I’d placed in a baby-food bottle. The doctor at Kaiser took one look at the tick and said, “Well, that’s not a deer tick, so you don’t have to worry about Lyme disease.” She explained that the tick which causes Lyme is the size of a pencil point, and the tick I’d brought was much too large.

As a native of Illinois, I associated only one disease with ticks, and that was Rocky Mountain spotted fever. Lyme was foreign to me. The doctor had blood drawn to test for Lyme, and I was sent home with no specific instructions.

Since I was feeling fine, I had no reason to believe I was ill.

Over the next few days, however, a red spot appeared above the outside of my right ankle, at the site where I’d removed the tick. I think I noticed it on Tuesday, August 5, which was exactly a week after I’d found the tick.

As those days passed, I watched the red circular area increase in size from that of a dime, to a penny; then a nickel and, finally, a quarter.

By the end of that week the skin inside the red area began to fade from red to pink to skin color, while the outer edge remained pink — giving the circle the appearance of a red halo surrounding a tiny black dot.

At no point did this area itch or cause any pain. I’d only discovered it by chance.

I called my wife’s HMO, explained that this red circular rash had developed, and asked if I should postpone the two-week car trip to Illinois and Wisconsin that we were scheduled to begin on Saturday, August 9.

I was assured, over the phone, that our plans need not change; because, even if I did have a tick disease, two weeks away should be no problem.

By the time we’d arrived in Springfield, Illinois, for our visit, the fading circular halo had nearly vanished, and I’d gradually become ill. I was weak and had general body aches similar to the flu.

After my second day in bed with these worsening symptoms, my wife called the HMO. The doctor assigned to my primary care instructed my wife to take me to the HMO’s nearest facility, which, we were told, was in Ohio. My wife pleaded for help, explaining that I was quite ill in Springfield, Illinois. Still, she was told the HMO could take care of the problem only in Ohio, since we were out of our home coverage area.

Frustrated, we decided to act on our own in Springfield. We would use my secondary, individual insurance through my employer, so my wife drove me on August 13 to the Springfield Clinic “Prompt Care” facility, where I was seen by the doctor on duty.

She listened to my account and ordered blood and urinalysis tests, which detected no illness, but did show a slight reduction in my white blood cell count. She decided to put me on doxycycline for ten days. When we left Springfield for Madison, Wisconsin, on August 15; I still had the flu-like body aches, weakness and a headache. In addition, numbness occurred on the underside of my arms.

In Madison I continued to feel very weak. My abdomen was a bit sore, I’d become weak, and had a debilitating headache. I was in bed with these symptoms at our motel room August 16 and 17, ruining the trip to see our daughter. I called the primary physician I see under my employer’s plan on the 16th, and was told that if my headache persisted and I had a fever above 100.5 to go to an emergency room immediately. I had no fever, so we continued on our return to Virginia.

On the 17th I was surprised to discover another, huge red circular area on my lower right abdomen.

?

PHOTO Tick Wound Blue Outline– FINGERS near BLUE PEN CIRCUMFERENCE

[With a pen, we drew a border around it, to see if it would get any larger.]

It was much larger than the one I’d had on my ankle. This area was about the size of a half-dollar and deep scarlet in color, with a strange red curl extending from the top. The area was not painful and did not itch. However, when I applied pressure on it, I felt nauseous for several minutes afterward.

We spent the night of August 18 with my older brother in Chesterton, Indiana. When I awoke on the 19th, my body was jerking, as though I had a chill, but much more violent. My temperature was normal, and after an hour or so the jerks dissipated.

On August 20 the large red area on my abdomen had grown in circumference (the size of an old silver dollar) and even deeper red in appearance.

PHOTO Tick Wound Size Compared With Penny– PENNY NEXT TO SILVER DOLLAR RED AREA

We decided to stop at an urgent care facility just off of I-70, attached to St. Francis Hospital in Dayton, Ohio. There I saw a physician who was mystified by the rash, researched possible causes and found none.

She ordered blood work and thought perhaps the scarlet abdominal rash could have been caused by a drug reaction or an infection. She told me to stop the doxycycline and gave me a prescription for amoxicillin.

At the suggestion of my eldest brother, a pathologist, I continued on the doxycycline and began taking the amoxicillin. Initially, when we stopped by his home on our way to Springfield, he said I couldn’t have Lyme, because the tick that spreads it is nearly invisible. However, as we talked with one another by phone and he followed my description of my symptoms, my brother began to do some research. He found that the engorged female deer tick is visible.

“Nick,” he said, “you have Lyme disease. You’re a writer; keep notes and write about what’s happening. You’re going to educate a lot of doctors.”

On August 21 I discovered that the “curl” at the top of the scarlet abdominal rash had developed into a faint circle. Looking more closely, I could see the outline of two pink circles sitting above the abdominal rash. In effect, the large scarlet rash had the appearance of medallion suspended from a double-rounded pink chain.

On the morning of August 22, I awoke with my body jerking. This time the jerking was much more intense and lasted much longer than the jerking I’d experienced on the 18th. After an hour or so the jerking subsided. Again, on the morning of August 23, I woke again with the jerking (my body reacted as though it had been shocked repeatedly by a cattle prod). A similar event occurred later that evening. Clearly, these violent episodes were not “chills.”

By August 25 the jerking came and went throughout the day. I saw my non-HMO physician. She ordered an MRI, and gave me a referral to a neurologist.

I had the MRI on August 27 and saw my physician again later that day. She looked at the MRI and said it appeared normal, but wanted to wait for the radiologist’s report.

She then said the jerking could have been caused by a drug reaction, that the Lyme test which had been performed at the HMO had been negative and that the tick was too large to be a deer tick. She also said that even if I did have Lyme, I’d been on antibiotics long enough to have killed the bacteria that might have been involved.

I felt very confused. I saw the neurologist on August 28 and, after checking my reflexes and looking at the MRI, he said everything appeared to be normal; though he was puzzled by my body jerks, which were continuing to take place throughout the day and night. He ordered a spinal tap and an EEG.

At the suggestion of my wife, I called my physician and requested referral to a Lyme specialist. Her office called back and gave me a referral to an infectious disease specialist in Annandale, Va.

On the afternoon of August 29 I was examined by the specialist, who, upon listening to my history, viewing the abdomen photos, and observing my non-stop body jerks, said he felt I had either Lyme or another tick-borne disease. During the course of the exam he later said he was sure I had Lyme disease.

He ordered a 21-day course of intravenous antibiotics (Rocephin) and said I would begin to feel better by the second week and that the disease should be cured by the end of the antibiotic therapy. I was relieved that we finally had found a physician who seemed to know what had been taking place in my body. He suggested I stay home from work the following week.

I experienced considerable jerking of my body on Sunday, August 31.

September 2003

On Monday, September 1 the jerking stopped, but I experienced pain in my head, neck, shoulders, arms and legs. On Thursday, September 4, I went to bed around 9:30 p.m. with a severe headache and neck ache and jerking. At about midnight I awoke with even more severe head and neck pain.

Throughout the week of September 7, I continued to experience the jerking, weakness and body aches. On the night of September 12, I experienced violent jerking of my body, a sensation of pressure on the top of my head, and a severe headache. I took an endocet, which had been prescribed for the pain. While the jerking stopped, the pain remained. I slept little that night.

I slept well the night of September 13 and experienced no jerking. The next day, however, after eating breakfast about 9am, I became very weak and my body began to ache and jerk. I went to bed and slept for about two hours.

Upon awakening I found that the jerking had stopped and the pain lessened. I still felt weak, with just enough energy to write this report. It is now 5:16 pm on September 14, 2003. I am a bit dizzy and have numbness on the underside of my arms and hands.

At the end of September 2003, my symptoms seemed to have been abated, and my infectious disease physician declared me cured of Lyme.

October 2003

Total healing seemed to have been complete by the first week of October, 2003. No pain, no tingling/numbness, no body jerks.

November 2003

Approximately seven weeks later, in late November, 2003, the jerking symptoms came back. Puzzled, I returned to my infectious disease doctor, who seemed perplexed. Asked if he had ever experienced a recurrence of Lyme, he said, “Never; and I’ve been in practice 17 years.”

December 2003

Nevertheless, he placed me in Fairfax Hospital on December 9, 2003, and began a new course of I.V. Rocephin. At the end of that first night in the hospital, my jerking disappeared.

However, next morning I awakened with the severe body jolts again. The infectious disease specialist had my case reviewed by a psychiatrist and neurologist, both of whom could find nothing that would explain my symptoms. The psychiatrist said my behavior could not be linked to the medications I was taking for psychiatric reasons. The neurologist’s exam, which included a spinal tap, showed no abnormalities; and no evidence of the Lyme spirochete.

The infectious disease doctor ordered a ‘PICC’ line (peripherally inserted central catheter) to be inserted into my lower right arm and threaded up into my chest cavity, so the next round of antibiotics could be delivered directly into a major vein near the heart. He told me to check in with him the next day.

At his office the following day the infectious disease doctor again reviewed the medications I am taking for psychiatric illnesses. He changed his assessment and told me the violent jerks I was experiencing were “clearly electrical,” not related to Lyme or any other disease, and suggested I go see a psychiatrist and neurologist.

My wife and I were both stunned. I’d suddenly been dropped by the physician who had seemed to be on the right path. Rather than go with the evidence before him, he said he’d never seen a recurrence, reviewed the medications he already knew I took for my severe depression, and appeared to be giving me a ‘go and sin no more’-type dismissal.

A few days later, the severe joint, muscle, head and neck pain returned; so I made an appointment to see the same doctor. Despite my report of intense pain, he repeated, “We had an agreement; you are to see a psychiatrist and neurologist,” and expressed no further interest in my case.

In the ensuing months the pain returned to all joints, neck, head, and extremities; gradually worsening. The body jolts became quite violent.

I arranged to see the neurologist who had examined me at Fairfax Hospital. She, too, was puzzled by my condition, but wanted to help me find the cause and get treatment.

She referred me to a specialist at Johns Hopkins Medical Center. However, that physician merely reviewed my lab results (all had been negative for Lyme) and said, “You don’t have Lyme disease.” I told him I was not trying to prove I had a particular disease: just that I was ill, my condition was getting worse, and I needed help. He said there was nothing he could do.

My neurologist then referred me to a specialist at the University of Virginia Medical School, who also reviewed my labs, said I didn’t have Lyme and whatever I did have would not be known for “20 years or so.”

2004

Next I looked online for anyone who may have worked on a recurrent tick disease, and found a physician who had published a study on the recurrence of Lyme in the 1990s. She practiced and conducted research at the State University of New York at Stonybrook. I quickly made an appointment to see her.

We booked a train to New York, where we transferred at Grand Central Station to a commuter train that took us to the SUNY Stonybrook hospital on Long Island. When our appointment was called, the doctor reviewed my history, dictated her report to my neurologist, then examined me and said her conclusion was that I didn’t have and never had Lyme disease. Despite my plea that I was not trying to prove Lyme, just get help; she said she felt that my symptoms would eventually “clear-up on their own.”

We returned to Arlington to report back to my neurologist. Unlike all of the other doctors we’d seen, she continued to be interested in my case, and acknowledged that I did have some disease. She also said she had to rely on “someone smarter than I am” to try to solve my case.

So, instead of taking the easy path and wishing me well, she again gave me a referral, this time to a Fairfax City (Va.) Lyme specialist, whom she said was controversial, but could possibly help me. And, to alleviate the worsening pain, she also referred me to a pain specialist in Fairfax County, Va.

I finally was ‘getting it’ that Lyme is a ‘political’ disease, because many doctors believe that the only people with Lyme were those with a positive blood test. All my tests had been negative; yet I had the tick and the photographs (thank you, Lisa and Denny) of a classic secondary circular rash.

We made arrangements to see this new doctor.

To recap: Between December 2003 and April 1, 2004, I had received no treatment for my ailment. The photo I had of the large red area with the curl was the only concrete evidence I could present to physicians … those who attempted to understand my condition and help, that is.

The new doctor listened to my description of my situation with great interest and viewed the photo. She said that Lyme was one of the most difficult diseases to verify, but that her clinical diagnosis was that I did have Lyme disease, and I needed to begin I.V. Rocephin treatment immediately.

After about a week of infusion at her office, I was instructed by this new doctor to go to the Virginia Hospital Center in Arlington, Va., to have a Bard Mediport implanted in my chest. This device — similar in concept to the PICC line — would allow me to infuse I.V. Rocephin into the major veins near my heart. This was done daily, in our own home, for seven months.

At the doctor’s suggestion, I had my tonsils removed, with the hope that the spirochete might be detected in them. Alas, no spirochete was present in the tonsils.

This new doctor explained that the Lyme spirochete bacterium “hides” in other cells. [This "hiding" concept was difficult for me to understand, until I read this article, one of the most informative I have seen, and made available by a Lyme support network.]

As treatment continued — with my doctor adding more medications to fight the infection — my situation continued to deteriorate. Two months later (October 2004) the doctor noticed my severe sweats/chills and heard my complaint of painful and very weak legs when I tried to climb stairs, whether at home or at a public building.

She began to suspect a babesia co-infection and commenced treatment with Mepron and Artemisia to attack not only the Lyme but also babesiosis. She then halted the Rocephin. She believed beyond doubt that I did have Lyme and babesiosis, but was concerned that my condition did not seem to be improving after nearly 9 months of I.V. treatment.

Again, her diagnoses were clinical; but my description of my symptoms left her with no doubt that I had these diseases.

Visible symptoms included loss of muscle, loss of hair on the legs, sweats/chills, some violent jerking (usually only at night in bed), extreme difficulty and pain while climbing stairs. I also experienced joint/muscle specific pain, and periods of extreme exhaustion. Another very new symptom was severe (a level of 8 out of 10) pain on the surfaces of all my teeth; both top and bottom rows. I checked with my dentist on December 30, 2004 — by then the pain was gone — and he found no evidence of dental disease and had no explanation for the pain.

On December 26 I was taken by ambulance to an Arlington hospital for what seemed to be constriction of my throat/airway. The symptom began as rough pain in the back of my throat, which spread down my esophagus. Examination found no constriction, and I realized, again, that the source of the pain was in my damaged central nervous system, not where the pain seemed to be. This sudden, spreading throat pain became a new addition to my catalog of pain.

During the night of December 27, I awoke with violent, severe chills for which nothing gave relief. Then I noticed my breathing had become alarmingly shallow. I said it felt as though I was taking only a half breath in and a half breath out; I worried that I would cease breathing. My wife took my blood pressure — with an automatic cuff — and it appeared in the normal ranges. However, my pulse was around 50 and then began to drop slowly: from 50 to 47 and then 42. I tried to remain calm and took my pulse by using the clock and my wrist.

Perhaps that distraction helped reduce my anxiety. The feeling of impending inability to breathe was quite frightening. We went back to bed; when I awoke, my pillow, cover and thick bedspread were soaked from my perspiration which apparently occurred during sleep after the low pulse/shallow breathing incident.

2005

On January 5, 2005, the pain in a.m. was severe (9) and stayed that way for hours, even though I was taking oxycontin (40mg 3x/day, prescribed and closely monitored by a pain specialist physician) each day for pain. Despite using that potent drug, there are some days when even more severe pain will “break through” between dosage times.

My physician urged me — because, she said, “We’re missing something” — to get in touch with a New York doctor who uses herbal remedies. She believed he could offer some hope to cure me.

I saw this Asian doctor on April 2, 2005, in his New York office.

Since starting use of his herbal supplements (it is now June 25, 2005) my pain has diminished to the point that I am able to go into work every day. [His treatment, in the end, did not bring a "cure."]

I still had days of pain, but the instances did not reach to the 9 level. However, I am weakening and it has become difficult to walk. I walk very slowly, at least I did yesterday and today.

The chills/sweats are gone. And I had reduced my pain meds — as of June 20 — to 40 milligrams of Oxycontin in the am and pm. I took, as needed, oxycodone (also known as Oxy-IR) for pain that often occured during the midday.

Our chief concern centered on weakness, especially in my legs.

On weekends I am frequently in bed most of the day, due to pain and weakness.

2006

A new and strange symptom has appeared: I began to have difficulty reading and concentrating at work between 9am and 11am. Frequently I became aware of these events when I noticed I had held down the key of the last letter I’d typed, so on the screen there appeared a long string of one letter — nnnnnnnnnnnnnnnnnnnnnnnnnnn, for example. Other times, I’d suddenly realize that I’d been staring at the screen, unable to move, for an hour or more. My mind was in a daze or ‘fog’ that permitted no ability to work.

To deal with this incapacitation I received permission from my boss to lie down under my office desk and nap for two to three hours. I would place a small sign on my door that read, “Please do not disturb. Thank you.” It could happen as many as three days out of five in the week. I was able to complete my work each day, but sometimes I had to stay much later than the rest of my colleagues.

2007

I saw my Virginia physician monthly, and she tried a number of medications to attack the source of my persistent symptoms.

I remained plagued by unanticipated severe jerks or jolts to my body…. sometimes in my office, sometimes in meetings… and, often, very violently in bed at night. I would awake with rapid, upper body spasms … it felt like Bam! Bam! Bam! Bam! for up to 20 times … maybe 30, before the episode stops. I took 0.5mg of clonazepam, which usually ended the disquieting symptom.

The other persistent symptoms consisted of extreme exhaustion, coupled with mid-morning double vision and the inability to concentrate. I continued to nap when necessary.

I also still had severe attacks of pain, which could reach a level of 8. I had no idea when these pain attacks might to occur, but they rarely occurred during the work week. Frequently I awoke on Saturday morning with the pain and had to rest in bed, unable to do anything else, until the pain ebbed, around 5pm or so. My pain physician said the weekend pain could be fallout from the stress of the work week on my body.

However, my situation seemed to be moving in a positive direction: the mental confusion had begun to diminish, though I still would lie under my desk for an hour some days. On Saturday, September 29, I awoke with no pain and was full of energy all day.

On September 30, 2007, I awoke with 7 pain and worried it could be another all-day bout. But the pain diminished, with some remaining in my knees, shoulders, ankles and fingers.

My pain specialist replaced Oxycontin with a single daily dose (at 5am) of Avinza — a time-release morphine capsule. Yet, still, on some days I experienced periods of intense pain, for which I may take 5mg Oxycodone, one-at-a-time, for up to four separate doses.

By 4:36pm on the 30th, the pain was marginal (3), and I was able to work on my writing with a sense of hopeful energy.

Two other milestones that week: I was able to walk the 1.5 miles to work from my house to the subway. That would have been impossible over the span of the previous four and a-quarter years. My knees ached most of that morning, but not enough to halt work; and I had no walk-related pain the next morning.

I believe my Lyme specialist physician’s treatment, though considered unorthodox by some, has brought me to this level of good health. I’m not completely healed, but there has definitely been progress, thank God.

2009

By early June of 2009 my situation seemed to be moving in a positive direction: I had just reduced my main pain medication — Avinza (time-release morphine) — from 60mg/day to 45mg/day. I had not used oxycodone for several weeks.

Then, without any warning, head/eye pain began mid-day on June 7. It progressed — to level 8 — and spread to extremities, neck, etc., and kept getting worse, despite several doses (at one hour intervals) of oxycodone. By 10:00 pm. I had to resort to another medication to enable me to sleep. Lately, my pain has been more constant, and the condition of ‘no-pain’ has almost disappeared.

On June 20, 2009, after several ‘normal’ days, pain began at 7.5 in intensity, progressed to 8, and affected these parts of my body: knees, elbows, wrists, hips, neck, shoulders, spine, ankles, fingers, palms, head, jaws, chin, temples, ears, legs and eyes. It became so debilitating that I took breakthrough medication at 5:50 p.m.

The pain can occur for no reason. I have no idea when or if this will end; I’ve long given up on the possibility of a ‘cure.’ Six years, and the pain continues.

2010

Primary symptoms: severe chronic pain, violent whole-body jerking (mostly in bed at night), occasional extreme exhaustion/inability to concentrate, and debilitating leg pain. Frequent (once a week) diarrhea led to discovery of a gluten allergy. Eventually, soy was added to the allergy list.

2011

My condition changed, dramatically, the week of July 11. I was helping to staff a legislative meeting for my education association employer and began to walk from the Senate side of the Capitol (Constitution Avenue) to the House side (Independence Avenue), about four city blocks.

After roughly 50 to 100 feet of walking, both legs were in pain, primarily deep inside the muscles in my right thigh, and then the left thigh. Walking grew more and more strained; so I headed for the subway and took sick leave for the rest of the day.

The next day (Friday, July 15) I rode Amtrak from Union Station to Williamsburg to visit my wife, who was working as a site interpreter at the Jamestown Settlement near Williamsburg.

I drove from the station to the Jamestown Settlement parking lot. After locking the car I remembered I’d forgotten something, so I turned to go back to the car. On the short (50 feet) walk back, my legs again became painful, with deep muscle pain in both thighs, a tightened feeling in the backs of both legs, accompanied by such weakness that I found it difficult to walk.

When it came time to tour the Jamestown Settlement Museum, I told my wife that I felt I would not be able to walk through it, because of the intensifying pain and weakness. So, she found a museum-provided electric cart, which I used throughout our tour.

I had never even considered use of such a device, which I associate with the elderly and handicapped.

When we later began a tour of another museum at the Yorktown Victory Center, I soon knew I’d need another electric cart. In each case I was grateful such devices were available.

In the ensuing days and nights, the pain worsened, almost exponentially. I had to use oxycodone at least three times each day and I started an application for federal medical disability leave. Retirement did not, at that point, seem to bring the thoughts of relaxation and peace I once would have expected.

September 6, 2011 — My boss at the association, after listening to my account of the Capitol and museum episodes, suggested I consider a medical leave and then reassess after three months. After that period, he said, I could apply for the association’s long-term disability insurance.

Subsequently, with the assistance of my neurologist, I was granted three months of medical leave. I also prepared documents to be submitted for the association’s two-year disability insurance.

2012

At the end of my medical leave, I retired from the association on November 18, 2011, after 26 years of service. My application for my employer’s long-term disability plan was denied by their insurance carrier. The reason? I never tested positive for Lyme disease. I’d had all the symptoms and I even found the tick; but, once again: no positive blood test means you have no evidence that you’re sick. The person handling my case was in my corner and wanted me to be granted the benefit; but it all came down to that one, fallible test, which I could not provide.

A similar application to U.S. Social Security’s Federal Disability program was initially denied. I was given the opportunity to appeal, and, to our astonishment, I received a notice that my federal application had been approved about two weeks before my 66th birthday, my full retirement date and the date on which the federal disability insurance would expire. (I was awarded a lump sum payment, which gave me disability benefits for the last few months before my 66th birthday.)

Meanwhile, the pain makes life a daily struggle. Exhaustion requires a daily 2 to 3 hour nap in the late a.m. or mid-afternoon. On a ‘pain day’ I may have to take a single oxycodone at various times to reduce the pain and help me remain somewhat active.

I’ve also noticed that I’ve become quite thin. My weight has dropped to as low as 159lbs. When this journey began in July of 2003, I weighed 183lbs.

Walking, again, can be painful and I tire easily.

On July 23, just as I was about to shut the front door of our house to join my wife for an afternoon movie date, I suddenly experienced pain around my back and midsection, which spread rapidly to my neck, eyes, head, arms legs, joints. I took an Oxycodone, but the pain continued to worsen. The date was off. Heading for a large easy chair and my iPod — filled with “healing” meditations and “space” music — I settled into pain distraction and attempted sleep, while the medication did its job.

2013

February 2 — Weight at Jan. 3 doc visit was 156. Skin is extremely thin and limp/wrinkled in arms, abdomen. Good biceps, but where’s the rest of the flesh that’s supposed support and surround them?

Cheek bones more prominent, giving a ‘gaunt’ look. Palms are deepening. All blood vessels appear as on top of skin, not under it. (Slight exaggeration, but that’s what it seems.)

2014

April 1 — Weight is now stabilized at around 170lbs, but other symptoms have become more worrisome. Touch to my palms and scalp can bring pain. The skin across my forehead — beyond the temples and above the hairline — can be marked by as many as six deeply set furrows.

Nearly every part of my body — except — continues to recede at a steady, glacial pace. More prominent each week are the bones in my hands, wrists, forearms, face, ankles, toes and pelvis. These imperceptible changes have occurred over the length of my journey, and have been, until recently, more discernible to me than to others.

And the pain … the relentless, unyielding pain … maintains its solid grip.

2023

My pain physician, Dr. Justin Wasserman, M.D., took me off of oxycodone and replaced it with a drug that is much more successful in diminishing my pain with a simple combination pill — Buprenorphine-Naloxone — that has minimal side effects and has all but erased the most intense, crushing pain that has debilitated me for so long. I am extremely grateful for his help in giving a somewhat normal life back to my wife and me.

At present, I weigh 137 lbs and am undergoing physical therapy to help me prevent falls, of which I have had too many. A specialist at Johns Hopkins gave me a “long-shot diagnosis” of Powassen disease, for which there is no cure, but at least it could provide an answer for this relentless wasting and occasional head pain.

Where is this leading? Each day is a gift. Each hug is precious. Each kiss, divine.

********************

I am indebted to my amazing wife — my life’s partner, soul mate, lover and mother of our four daughters — whose smile and hugs and sturdy right arm make it possible for me to live as ‘normally’ as possible. She has adjusted her life to care for mine. She reads voraciously in search of new paths to pursue; new hints for answers. She has devoted each and every year (2013-present) of her retirement, to assure that I arrive at health appointments — at lease one each week — on time and monitored. What we’d both hoped would be years of relaxation has, instead, yielded to a period of much more limited goals.

She has never given up and has always encouraged me to seek a solution that could end all the ills befallen us since July 29, 2003. I can never imagine life without her.

This diary of Lyme is dedicated to her: Mary Ann Templeton Penning, the love of my life. She and our four daughters — Marni, Rebecca, Lisa and Anna — make me whole and bring total joy.

Pain may interrupt, but their love is with me always.

03/16/14 — 8:00pm