15 April 2019

Guide to Being Mortal by Loving Rowing North

My best friend is interested in change of life transitions, so when insomnia struck during a recent visit to her home, all I had to do was reach out to the bookshelf to find out how to cope with the inevitable.

I started with the ultimate inevitableJane Brody's Guide to the Great Beyond, which is a very practical guide to facilitating a 'good' death.  The focus is on how to overcome physical discomfort while maintaining continuity with your sense of self.  This includes planning tools like Living Wills and Health Directives on file with your physician (do you want to be resuscitated?  intubated?  put on ventilation?  given antibiotics?  sustained by a feeding tube?), as well as tips like the need to have a real life personal advocate to fight to implement those directives and how to make a living will resuscitation card for your wallet (with contact info plus "Full" code = save me!, "Full except cardiac arrest", or "Hospice care" = just ease the pain).

There are tips for family, friends, and caregivers as well, like how to spot discomfort (pain of course, but also check if they are having difficulty breathing, nausea, constipation, dry mouth, itching, etc.), and the top 11 things we can offer the dying:  Presence, Listening, Acceptance, Candor, Humor, Patience, Advocacy, Courage, Hope, Creativity, and Sensitivity.  We can't do it all, but everyone has something to contribute and we should each focus on what we have to offer.

But a 'good' death also includes nurturing relationships, maintaining meaning, and the importance of wrapping up loose ends and retaining control (i.e., remaining a party to decision making), which is largely about deciding and communicating what you really want.

Which brought me further along the shelf to Atul Gawande's soothingly written Being Mortal.  You may have seen him on TV, as he's been interviewed a lot in recent years due to his somewhat heterodox approach to the taboo subject of death.  First, he dares to talk about it and the need for end-of-life discussions, and Second, he puts the Hippocratic oath to the test by asking what is harm in the context of imminent death?

He points out the fundamental difference between medical care and hospice care:  in the former, we sacrifice current quality of life (via some rather unpleasant treatments) for the chance of buying more time, whereas in the latter we aim for the fullest possible life at the current moment without regard for a future.  Choosing between the two comes down to what we fear most:  the mistake of prolonging suffering or the mistake of shortening valued life?

The choice seems obvious when we're talking about a young person:  the treatment will suck, but I may get another 70/60/50/40 years.  It's less obvious as we age, and both our tolerance for treatment and the payoffs decline.

Paradoxically, we are often still relatively young when we decide to 'take control' by making Living Wills and Health Care Directives so everyone will know what we 'want', so we tend to imagine that the day of reckoning will be far off in the future--which makes it a lot easier to check the "Do Not Resuscitate" box.  But what if it were tomorrow?

Although the decision may ultimately boil down to the pedantic (pull the plug), it's actually a deeply philosophical and emotionally wrenching choice.  First, the medicine vs. hospice duality can be applied at any age depending on individual circumstances and, if applied to relatively healthy people and/or at relatively young ages bumps up against cultural prohibitions of suicide.  That's not easy territory to navigate.

Second, although we like to think it's all about us and our right to choose our own end (free will!), we are seldom insular:  almost everyone has someone who loves them, and can you really tell the doctors to unplug you while your loved one looks on?  Can you do that to them?  And will they let you?

Gawande doesn't have the answers; his goal is to start us thinking about it so it won't be quite so arduous when we get there.  One lesson that speaks to this mid-lifer, however, is the reminder to live in the moment as well as the future and to seek that fine line between avoiding pain and discomfort and taking the risks we need to feel alive right now.

And right now, I'm not quite ready for a DNR but I am struggling with some things.  But according to Byron Katie, help can come from Loving What Is.  In his (distinctly male) perspective, coping with any challenge in life boils down to five steps:

(1) Deal in reality.  Don't get caught up fantasizing about "if only's" or blocking out truths you don't want to face, but objectively acknowledge the actual current state of affairs.  Face facts.

(2) Stick to your own business in your actual sphere of influence.  Don't get upset about other people's realities, or things you can't control.  Be practical.

(3) Drill down on negative thoughts to evaluate what is/is not objectively true.  Determine what is true by evaluating if it can actually be known absolutely (or is just a subjective idea), how you react to it (emotionally or logically), and if you can find evidence for the inverse (negating absolutism).

(4) Write it down, because you can't reshape your reality until you acknowledge it.  Force yourself to see the truth and the untruth by articulating both.

(5) Have an objective dialogue with yourself (rather like an out-of-body experience).  Set your emotions temporarily aside and play the Devil's advocate until you recognize that continuing to attach to the nightmare means investing in a future you don't want.

This recipe obviously worked for him, and might not for me or you, but as he points out, What have you got to lose?  You might as well start trying to free yourself from the darkness and move toward the light.

Even if you're already in the light, there may be some things you can do to facilitate transitioning into dusk.  That's the theme of Mary Piper's Women Rowing North:  Navigating life's currents and flourishing as we age.  Her few pearls of wisdom for being happy in old (or any) age include:

(1) Be intentional.  If you've ever allowed circumstance or opportunity to dictate the direction of your life, now is the time to take control when choosing life projects (within reason).  Many of us flow through life like water, always taking the path of least resistance.  Satisfaction, however, more often comes from struggling uphill a bit--especially if we choose the hill.

(2) Be strategic.  Structure your days to be rich in meaning and full of joyful activity.  By now you ought to know what makes you happy and what doesn't, so intentionally set yourself up for success.  Work in what you need/like most, recognizing that what may strike you as a luxury is actually a necessity.

(3) Reinvent yourself.  We can't rewrite the past, but we can write a better, more positive, and more rewarding future.  This is what Katie's book was all about.

(4) Connect.  Humans are social creatures, so find ways to be connected or feel useful. 
Gawande also argued that everyone needs a purpose and a sense of belonging, and cited research showing that even little things like maintaining houseplants and pets can greatly increase satisfaction.

(5) Be authentic.  It's never too late to finally start being true to yourself.  Although I was gifted "Warning" by my employer when I was a scant 27 years old, I later lost track of what Martha Beck (recall the North Star book) calls our essential self.  But if you can't be yourself by Old Age, when exactly are you planning on it??

That may be the ultimate guide for navigating change of life transitions:  if we follow the North Star of our essential self, maybe we won't get (too) lost.

15 March 2019

Solo in Rome

I admit it was tempting, but I can only handle so many airports in one year, so come September I let EZ slip away all on his own to a conference in the university town of Viterbo, on the western side of Italy just north of Rome.
The days were spent on the usual blather, and the evenings on catching up with the Slovenian gang--most of whom we got to know pretty well back in 2013.
Later in the week some of them hopped in a bus and took off to check out nearby beech forests.
And the Parc Abruzzo national park further east and up beyond treeline.
After crossing all the way to the east coast along the Adriatic Sea, they stayed in the coastal village of Peschici,
where they ate well in the stereotypical ancient basement restaurant,
and took in an old church.
Then it was back to work, checking out the ancient protected beech forests in the Gargano national park, which uses the heart as a logo to represent the life-force of in-tact forest ecosystems.
Part of the park included extremely old trees that had been managed long, long ago and whose form still reflects the pollarding (repeatedly cutting off the young shoots to feed livestock) that was finally abandoned in the 1950s. 
The forest also has a long tradition of non-timber forest products, such as these cute little pine-cone owls.
Swinging back toward the west again, the group made a pitstop at some natural springs.
After the conference tour, EZ arrive in Rome in time to soak up evening in the city
and enjoy a nice sunset with the Vatican in the background.
The next day he spent hoofing it, for hours, through one street after the next of juxtaposed architecture.
Spanning centuries in the busy modern streets, past S. Paolo entro le Mura (1880)
and into quiet alleyways.
Occasionally he'd slip into a quiet church, such as the Igreja de Jesus e Maria (1674).
He even found a lovely, peaceful spot (Park Villa Borghese) right in the city.
But the real draw, of course, is ancient history, such as the Sant'Angelo Bridge (ca. 136 AD).
And the ruins of the Forum of ancient Rome.
Where time has weathered history to a blur, such as the Marcus Aurelius Column (193 AD).
And yet it's still pretty darn impressive.
Turning a corner you trip across the Colosseum (70 AD),
Or the Castel Sant'Angelo (ca. 139 AD).

I'm still a little jealous, but I also feel like I've been there--without the sore feet!


28 February 2019

Lyme Disease II

As we learned last time, Lyme Borrelia is not our friend.  Today we will learn that we are also not our friend.

Like many diseases that haven’t received much realistic (in vitro) research, the knowledge base is pretty thin and riddled with contradictions, yet malpractice-weary doctors are unlikely to look outside the box when it comes to diagnosis and treatment.  So there is the official, CDC-approved version of Lyme disease, and then the unofficial version spurned by the former but richer in actual experience.  Who’s right?  Who knows!

Official line:  attachment for >24 hrs required for transmission
Unofficial line:  way less

Official line:  if you don’t respond to a single round of antibiotics, it’s hopeless!
Unofficial line:  properly administered cycles of combination treatment works.

Official line:  Borrelia produces no toxins so all symptoms can be traced to immune responses
Unofficial line:  Borrelia produces a neurotoxin that causes encephalopathy and may block hormone receptors at the cellular level (leading to HPA insufficiency and hormonal imbalances even when blood levels of hormones are normal), and can induce neurotoxic substances such as nitric oxide and pro-inflammatory cytokines (IL-6, TNFa, IL-8) (which cause both perpetual inflammation and screw up your sleep-schedule via cortisol regulation).

Official line:  Treatment of PTLDS symptoms is limited to physical therapy, yoga, and a shrink for your inevitable depression
Unofficial line:  Treatment of PTLDS also includes clearing out the co-infections the tick also gave you (e.g.,  Anaplasma phagocytophilum, Babesia microti, Ehrlichia, Bartonella henselae, Mycoplasma, and other species of Borrelia), supplementing for your B12 and Magnesium deficiencies, and controlling your high triglycerides, cholesterol, and/or fatty phospholipids.

Official line:  If you don’t test positive for Lyme’s yet you have weird symptoms, you actually have:  Alzheimer’s, Arthritis, ADD, Chronic fatigue syndrome, Fibromyalgia, Guillain-Barre syndrome, Lou Gehrig’s disease (ALS), Lupus, Mononucleosis, Multiple sclerosis, or Parkinson’s.
Unofficial line:  Among symptoms caused by the neurotoxins, co-infections, and deficiencies mentioned above, an undiagnosed (check free T3 and T4) pituitary inflammatory cascade involving blocked receptors can lead to insulin resistance and hypothyroidism even when blood hormone levels are normal, and precipitate neurally mediated hypotension, which mimics the symptoms of hypoglycemia (palpitations, lightheadedness and shakiness, heat intolerance, dizziness).

Official line:  Current Lyme disease testing works
Unofficial line:  Not!

Wait a minute, you mean even if I get a test it might not work and thus my doctor will never treat my Lyme disease?  This is where the Official Line gets really dangerous.  Two issues:  first, the CDC protocols (that your Lyme-ignorant primary physician will be following) may prevent you getting the right test, and the tests are crap anyway.

First, CDC:  even if you are able to convince your doctor that you’ve been exposed to ticks in a Borrelia-prone region and have Lyme-consistent symptoms, the CDC insists on a standard two-tier testing (STTT) protocol.  The first tier is always an ELISA (enzyme-linked immunosorbent assay) to detect antibodies in your blood.  Unfortunately, ELISA can result in both false-positives (i.e., it’s not specific to Borrelia but may find some other infection or even autoimmune disease instead) and false-negatives.  Because there are so many false-positives, they insist that you follow-up a positive ELISA with the next test—fine.  At the same time, however, they discourage (read=insurance won’t pay for and doctors refuse to order) administering the second test if you have a negative ELISA.

But ELISA false-negatives can come about because (a) you jumped the gun:  your body can take 2-8 weeks to produce antibodies, (b) you took antibiotics (for something else) during the time period after infection so you have too few antibodies to detect, (c) your immune system is impaired so you didn’t make enough antibodies to be detected, (d) you’ve had the infection for so long that your immune system has stopped actively producing antibodies, (e) the lab used a first or second generation test (e.g., didn’t target C6), now considered unreliable, etc.  It is known that ELISA is most accurate about 4 weeks after infection but still only averages 50% during stage 1 (78-95% in stage 2 and >96% in stage 3—except for a-e listed above).

So early testing is problematic, resulting in too many false positives AND false negatives.  Yet you must cross this hurdle before your doctor will order the second tier of testing.

Alas, things do not improve with the second tier.  The Western Blot (immunoblot) is used to confirm antibodies specific to B. burgdorferi proteins.  This time, proteins in your blood are fried with a little electricity to get them to make patterns:  if the “bands” observed in your blood match those in populations known to have Lyme disease, then your test comes back positive.  There are, again, several problems with the test.  For example, not all antibodies are equal:  the body produces a lot of IgM early on in the infection, but IgG later.  Some labs assume you’re being tested in the first 30 days, so they look for IgM bands (23, 39 or 41 kD214).  But the detection rate for IgM bands changes with time since infection:  28-84% in stage 1 and 80-92% in stage 2, but only 9-16% in stage 3!  Similarly, detection rates for IgG bands (18, 23, 28, 30, 39, 41, 45, 58, 66 or 93 kD) also change over time:  only 0-21% in stage 1 and 33-72% in stage 2, but ≥96% in stage 3 (after ca. 8 weeks).  So if they assumed this was a late test and only used IgG, you could also miss the boat too.  If you don’t know when you were bitten, then they obviously need to do both.

Just looking for the right antibodies isn’t enough, though:  the results are open to interpretation.  For example, although there are 10 IgG bands available for comparison, not all labs test for all 10.  Further, each lab has its own standard for declaring a “positive” outcome:  some say in the first month there must be at least two IgM bands, while later on they require at least five IgG bands.  Others argue that any of certain bands (e.g., 23, 31, 34, 37, 39, 83 or 93) is good enough.  Yet more say band 41 plus any other band is good.  Rarely do you (or your doctor) get to see the actual results; the lab decides and all you see is “positive” or “negative”.  [Interestingly, if you have been vaccinated for Lyme disease, it is known that you will test positive for band 34--and yet not everyone agrees that 34 implies Lyme disease.]

So, the good news is that, if you’re normal (not a-e above), then the detection rate for STTT (i.e., doing BOTH tests correctly) is 29-78% for stage 1, 42-87% for stage 2, and ≥97% by stage 3.  Unfortunately, if you’ve tested negative for the ELISA or negative for the Western blot during stages 1 or 2, the odds of your ever getting another test during stage 3 are pretty slim.  If you do, of course, there is always the 3% failure rate, or a-e above (probably plus other exceptions not yet well documented).

A funny thing about the failure rate of these tests:  everyone knows they are crap.  One example:  of people who test negative for Lyme but are treated with antibiotics anyway (cautious doctors), 1/3 will subsequently test positive during treatment.  Huh?  This may be because the tests are crap, or because of “immune complexes” that can prevent positive tests, or because cysts don’t test positive, or…  Also, it is known that the CDC standards won’t work for people who were infected with Borrelia in Europe because the species (and thus the bands) are different.  Which reminds us that a test for Borrelia burgdorferi may not be all that helpful if you’ve been infected with B. mayonii in Minnesota, either.  Yet I was unable to find any research being done on species differences (although it was mentioned as a problem in a 2015 review).

But wait, there are some other tests available!  In stage 3, they can test for bacterial DNA in your joint or spinal fluid using a polymerase chain reaction (PCR) test, which has about a 60-80% detection rate (because although Borrelia pack a punch, they don’t actually reproduce that much so their total counts are low in your body). More recent tests for CXCL13 in cerebral spinal fluid have a sensitivity of >88% (but only 63%-98% specificity to Lyme’s).  Non-traditional tests like SPECT scans may be helpful, as there are usually Lyme characteristics abnormalities in encephalopathy (e.g., global hypoperfusion, either homogenous or heterogenous).  But to get to these tests, you have to find a Lyme-literate doctor and pay through the nose.

Before you give up completely, if you are convinced that you may have Lyme disease but don’t have access to a Lyme-literate physician (there are none in my county), you can probably convince your regular doctor to allow you do to a blood draw to send off to a specialty lab (e.g., Igenex) for testing.  Igenex is popular because they set the bar a bit lower for the number of IgM and IgG bands required for a positive test (among other things).  I just printed off the order form:  $2418 for the full Lyme panel.  Gulp.  I think I'll start with the basic test:  $686.

After all that talk about testing, it may come as a bit of a let-down that most diagnoses are still based on clinical symptoms.  Normally that means some of the stuff mentioned above, but it can also mean differential diagnosis—i.e., ruling out everything else (starting with that long list of diseases noted above).  In the end, if your doctor can’t prove you have Lyme disease and yet you have compatible symptoms, then he/she may apply the label “Chronic Lyme Disease”, which means “Lyme-consistent symptoms but no proof”.  Consoling, but not necessarily helpful.

So now what?  Well, traditional medicine says one 4-week round of antibiotics; others say at least one round of 6+ weeks (long enough for Borrelia to switch from a cyst back to a spirochete).  Of the two people I've spoken to lately who are being treated for very, very late stage disease, both took antibiotics for over a year before they started to feel better.  Otherwise, it’s all about managing your symptoms, as noted above, and boosting your immune system in the usual ways:
  • Diet:  eliminate inflammatory sugars and grains, increase anti-inflammatory veggies, seeds, raw cultured dairy, and organic meat
  • Supplement:  D, CoQ10, B-complex, Mg, Omega-3s
  • SLEEP at all costs
  • Minimize other infections:  reduce exposure to mold, pathogens, and parasites

OK, I confess, I made you read all that because I wanted to know if I might have Lyme disease, even though I've been tested before (never got past the ELISA).  What makes me think I might have slipped through the cracks?
  • Long history of exposure to Borrelia-infected ticks in US and Europe, including numerous known bites (some >24 hrs)
  • Some classic Lyme symptoms, such as 2 of the 3 in the Lyme diagnosis triumvirate.
  • Tendency for neck pain to cycle:  several weeks bad, then several better, which could match the multi-week Borrelia life cycle.
  • Ruled out nearly everything else, except "bad genes" (combination of poor sugar metabolism + a crooked misaligned spine) exacerbated by a stomach flora imbalance (fecal transplant anyone?).
After several weeks of wrangling, I conned my primary care physician into ordering the IgeneX test and await the results with trepidation.  On the one hand, it would be nice to have a culprit (everything wrong in my life is the fault of Borrelia!), but on the other a positive test would mean a long, arduous, expensive treatment path that is less likely to cure than to merely improve life-long symptom management.

So, maybe this is yet another dead end, or maybe it ends up with some dead Borrelia, but either way it may be only the beginning.  In the meantime, check yourself for ticks!