Saturday, November 19, 2011

Initial Diagnosis

November 17, 2011

“You’ll love it here.  The winds are beautiful when they blow.”

Those words you whispered in a dream haunted me this morning as I drove to work.  The remnants of last night’s windstorm littered Barnes, then Crosby Streets as I drove over, then down the hill to my office. Brilliant yellow orange red leaves wet, pasted to the pavement.  A ribbon of baby blue lined the sky above and below a hedge and then a wall of clouds in varying shades of gray.

I am trying to make sense of the senseless.  Piecing together what medical records and what you wrote in emails, on Facebook, Twitter, My Space.  Notes I find written on college ruled 8x 11 sheets of paper. 

The struggle with Lyme disease was really your story to tell.  It is a story that can only be told from the perspective of the participant.  The story I tell, will be different than yours.  But it is all I have.  You want me to write what you no longer can.  I feel it as thoughts flip cartwheels through my brain.

My lawyer’s training, my work now as a judge, demand that I look at all the evidence I have before me, come up with a conclusion based on a preponderance of the evidence.  It is the discipline I use approaching everything. 

In this case, your death was the conclusion—the final order I must grapple with.  It is the hedge and then wall of clouds in varying shades of gray that frame a ribbon of blue sky outside my window as I sit here going through your papers.

Notice of Occupational Disease and Claim for Compensation
US Department of Labor
Employment Standards Administration
Office of Worker’s Compensation Program

I found this application in the Banker’s Box.  On the outside, written with a black Sharpie the letters-AMP-your initials.  In your handwriting—IMPORTANT PAPERS.

I read further.

Name of Employee

Employee’s Occupation


Date you first realized the disease or illness was caused or aggravated by your employment


Explain the relationship to your employment, and why you came to this realization


Nature of disease or illness


Your signature on the bottom of the form.  February 15, 2005.

Exhibit A.  Admitted. 

Attached are your medical records to substantiate your claim.  I keep flipping back to the first page.  Exhibit A  Running the tip of my index finger over your signature. 

Exhibit B.


History and Physical Findings:
During work up for CTS Right hand by D.L. McDermott, Neurologist, blood serum showed + Lyme AbIgM by Western Blot.  No symptom.  No incidence of tic-bite.

Results of Diagnostic Studies/Testing:
+Lyme AbIgM by Western Blot

Lyme Disease

Vibromycin 100 g x 2 for 2 weeks
She is fit for duty

I cannot read the physician’s signature.  But it is signed.  By a doctor.  MD.  Whose diagnosis was Lyme disease.  Definitively.

Exhibit B.  Admitted.

In a whimsical mood and quite extemporaneously, Justice Oliver Wendell Holmes once remarked: ‘Facts in isolation amount to mere gossip; facts in relation become philosophy.'

The same could be said about Lyme disease.  Every doctor is his own philosopher, has his own philosophy. 

Philosophy: n.  1.a.  Speculative inquiry concerning the source and nature…
b.  Any set of ideas based on such thinking  2.  A basic theory concerning a particular subject.
Philosophy.  Everything is speculative.  You base your ideas based on speculative thinking.  You come up with a basic theory concerning the particular subject.

Lyme Disease.

It is hard to determine what is mere gossip.  It is impossible to be a patient caught between two philosophies. 

This is a lesson we have yet to learn. 

Exhibit C.

Attn: Flordeliza M. McDermott MD
Virginia Beach, Virginia 

Date Collected:  1/25/05

You are 23 years and 25 days old.

Date Reported:  1/28/05  2135

Lyme IgG WB Interp.             Negative

Lyme IgM WB Interp.            Positive

Exhibit C.  Admitted.

To distinguish the false positives from the true positives, a more specific laboratory technique, known as immunoblotting, is used. (The Western blot, which identifies specific antibody proteins, is but one kind of immunoblot; there is also a Northern blot, which separates and identifies RNA fragments, and a Southern blot, which does the same for DNA sequences.) In a Western blot, the testing laboratory looks for antibodies directed against a wide range of Bb proteins. This is done by first disrupting Bb cells with an electrical current and then "blotting" the separated proteins onto a paper or nylon sheet. The current causes the proteins to separate according to their particle weights, measured in kilodaltons (kDa). From here on, the procedure is similar to the ELISA -- the various Bb antigens are exposed to the patient's serum, and reactivity is measured the same way (by linking an enzyme to a second antibody that reacts to the human antibodies). If the patient has antibody to a specific Bb protein, a "band" will form at a specific place on the immunoblot. For example, if a patient has antibody directed against outer surface protein A (OspA) of Bb, there will be a WB band at 31 kDa. By looking at the band pattern of patient's WB results, the lab can determine if the patient's immune response is specific for Bb.
Here's where all the problems come in. Until recently, there has never been an agreed-upon standard for what constitutes a positive WB. Different laboratories have used different antigen preparations (say, different strains of Bb) to run the test and have also interpreted results differently. Some required a certain number of bands to constitute a positive result, others might require more or fewer. Some felt that certain bands should be given more priority than others. In late 1994, the Centers for Disease Control and Prevention (CDC) convened a meeting in Dearborn, Michigan [1] in an attempt to get everybody on the same page, so that there would be some consistency from lab to lab in the methodology and reporting of Western blot results.
Many patients have noticed that their Western blot report usually contains two parts: IgM and IgG.These are immunoglobulins (antibody proteins) produced by the immune system to fight infection. IgM is produced fairly early in the course of an infection, while IgG response comes later. Some patients might already have an IgM response at the time of the EM rash; IgG response, according to the traditional model, tends to start several weeks after infection and peak months or even years later. In some patients, the IgM response can remain elevated; in others it might decline, regardless of whether or not treatment is successful. Similarly, IgG response can remain strong or decline with time, again regardless of treatment. Most WB results report separate IgM and IgG band patterns and the criteria for a positive result are different for the two immunoglobulins. 

The website for the Center for Disease Control says the following on its first page:

Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics.

Lyme Disease Diagnosis and Treatment

Lyme disease is diagnosed based on:
  • Signs and symptoms
  • A history of possible infections to infected blacklegged ticks
Laboratory blood tests are helpful if used correctly and performed with validated methods. Laboratory tests are not recommended for patients who do not have symptoms typical of Lyme disease. Just as it is important to correctly diagnose Lyme disease when a patient has it, it is important to avoid misdiagnosis and treatment of Lyme disease when the true cause of the illness is something else.
I just want hard facts.  Physical evidence.  Something I can base my thoroughly objective decision on.  It is important to get it right.

You are 23 years and 28 days old.  When you get the results, you will still put all your trust in doctors.  You will believe you have a definitive diagnosis for what is wrong with you.  You will believe you will be cured.

You will not believe me when I tell you the importance of getting the right treatment with the right doctor.  You will not believe me when I tell you that two weeks of antibiotic therapy is not enough. 

You will remind me I have a law degree.  Not a medical degree. 

Because I am only your mother, not your doctor, not a doctor, you will trust them more.

Because I am your mother, I go to the internet.  Google Lyme Disease.  Begin building my case.  My arguments.

Exhibit D.  Your Honor.  I offer Exhibit D.

ADM: 2/7/05


Streptococcus pneumonaie in bacterial meningitis:
"Before the 1990s, Haemophilus influenzae type b (Hib) was the leading cause of bacterial meningitis, but new vaccines being given to all children as part of their routine immunizations have reduced the occurrence of invasive disease due to H. influenzae. Today, Streptococcus pneumoniae and Neisseria meningitidis are the leading causes of bacterial meningitis."
"High fever, headache, and stiff neck are common symptoms of meningitis in anyone over the age of 2 years.""The diagnosis is usually made by growing bacteria from a sample of spinal fluid. The spinal fluid is obtained by performing a spinal tap, in which a needle is inserted into an area in the lower back where fluid in the spinal canal is readily accessible. Identification of the type of bacteria responsible is important for selection of correct antibiotics."

Gram positive cocci in pairs in csf  means Streptococcus pneumonaie.  Bacterial meningitis.

Are you offering Exhibit D counsel.

I am, your Honor.

Any objection?
No objection.

Exhibit D is admitted.

Lyme disease is transmitted by Ixodes hard ticks; man is an accidental host.
Doxycycline, amoxicillin, or a cephalosporin
it is important to note that many people are not aware of tick bites, so a negative history for them should not be considered unassailable.

It is important to note:  There is a controversy surrounding what is known as chronic Lyme disease. 

I am a divining rod, seeking an underground source of water. 

I am thirsty.  I will not give up until I find it.

I am a judge.

I must render a judgment.

The tea kettle whistles under the gas flame.  I have a cup of Starbucks Via Italian Roast with a dollop of sugarfree hazelnut Coffeemate.  I need to brush my teeth.  I need to soak in a hot tub of lavender scented bubbles. 

I listen to towels tumbling in the dryer.  The whir of the processor in my computer as I try to piece Exhibits A-D together. 

Sadie feels me feeling you.  She comes and lays her head on my thigh, sighs.  I look down and see her plaintive button eyes.  Sadie still mourns your loss too.

She distracts me.

I Google “dogs mourning”.  I find an article by Dr. Nicholas Dodman.  He writes what I think Sadie would tell me if she could talk:

Pets may also show signs of loss and mourning in ways that the family may not recognize. Although somewhat different, they do feel the loss of loved ones. Many have a significant degree of attachment to their owner that leads to anxiety and distress when even short-term separation is thrust upon them, let alone bereavement.

Perhaps, the most famous dog-grieving story of all time is that of Greyfriars Bobby, a Skye terrier owned by a Mr. John Gray of Edinburgh, Scotland. Mr. Gray passed away in 1858 and was buried in Greyfriars Churchyard, Bobby was one of the conspicuous mourners. As time went by he never forgot his deceased master. Every day for the next 14 years until his own death in 1872, Bobby spent each night lying on his master's grave come rain, hail and snow. In honor of Bobby's devotion, a statue and water fountain was erected to his memory in 1873.

Sadie has no grave to go to.  She only has my thigh to lay her head on, my body to curl up to at night.

And I have her.

Moving along.

Exhibit E.  I offer Exhibit E.

                        ANTIBIOTIC, --THRU 2/21/05, --THEN 2G EVERY 12 HR, THRU

No objection.

Exhibit E is admitted. 

It is all I can process on this day.  We are adjourned.  For the evening.

I walk outside the sliding glass door onto my patio.

While I have been taking in evidence, deliberating, the clouds have won.  Have obliterated the ribbon of blue.  It is early afternoon, already the sky darkens.  First comes the mist, droplets so small I feel caressed by clouds, but it is cold.  Damp.  My cheeks pinken. 

Condensed water coalesces into droplets too small to fall as precipitation.  They are the clouds.  The moisture around us is continually evaporating, condensing in the sky.  Looking closely, I can see some parts of the cloud around me disappearing, evaporating.  Other parts grow, condense. 

The droplets concentrate on tinier dust, salt, smoke particles that form the core.

But before they can fall, the fall velocity has to exceed the cloud updraft speed.

This is not a trivial task.  Millions of cloud droplets are required to produce a single raindrop.

I am condensed water coalescing into droplets too small to fall as precipitation.  I am a cloud.  A collection of droplets condensing.  Forming a core around your dusty ashes.

This is not a trivial task.

                                           Love,  Mom