15 August 2019

Road Trip: Dreiländereck

I'm not sure about the clinical definition of claustrophobia, but it might not be quite the right word to describe my current sensation of being suffocatingly boxed in--given that the box that currently oppresses me is at least 32,000 square miles in area.

That's a teensy bit bigger area than usually triggers this anxiety disorder, which makes people hyperventilate in tunnels and MRI tubes.  [I recently had to skip the ride in an elevator that was literally 3' square--I felt sick just looking inside.]  I'm obviously not at risk of literally suffocating, yet I can't help but feel trapped by the seemingly unending expanse of central PAI would have to drive for many hours to reach the state border, let alone another country, in between is smotheringly vacuous homogeneity.

But it's all relative, and I'm just a little slow to readjust after my recent travels in the Dreiländereck--one of many European corners in which three countries (and three languages) come together.  In a recent effort to discover the backyard hidden gems in a region not known for tourism, we spent a day exploring a scant 600 square miles of the French-Luxembourg-German border region (aka SaarLorLux) that centers on the town of Schengen (where they famously signed the treaty opening EU borders).

Under overcast skies, we naturally began by crossing the Mosel/Moselle River to tank up on gas, chocolate, and coffee in the sales-tax oasis of Luxembourg.  From the Remerschen side, we gazed over the valley across vineyards and woodlots dotted with villages every kilometer or so.
From there we cut west into France (where the roads immediately became bumpier), aiming for an old, seemingly abandoned mini-castle near Mondorff.
Amidst the perfectly typical and relatively boring village architecture we passed by the kind of place that would once have been my fantasy fixer-upper.  But the allure now extends no further than pulling over the car for a quick snapshot.
After years of seeing posters advertising the medieval French town of Rodemack, we discovered that their claim to fame is an annual medieval reenactment fair--the village itself, as so much of this region, has relatively little charm.
Back on smoother pavement in Luxembourg, we continued northwest to Dudelange (Diddeleng in the local dialect...), another name made familiar by the local soccer club but otherwise unknown.  In this surprisingly lively small town we discovered the neogothic church of St. Martin, which sports intensely colorful early 20th century murals.
Heading back east we passed by the 19th century church in Bettembourg.
And then plunged back 2000 years, into a series of fern-lined backyard wells in a former Roman development near Dalheim, Luxembourg.
Where we enjoyed a moment of bliss under my all-time favorite flowering tree, the European Linden, which produces a light, honey-like perfume that I (and the bees) find irresistible.
Continuing east through wine country, we hiked to a chapel known as the Koeppchen that perches over Wormeldange.
And nearby we came across one of the most exciting pieces of technology I have ever seen.  Being demonstrated by a thirsty young Charolais steer, who eventually got bored of staring at me in hopes of better things and went back to pumping his own water with his nose.
Our final stop for the afternoon was a reconstituted polytheistic Roman temple on a former transit-way between Trier and Metz near the town of Tawern, Germany.
Where I was naturally distracted by the gutter design.  Stop looking at the roof--the water just tumbles down, into stone ground-gutters that neatly divert the rainwater down and out to awaiting cisterns.
I'm not sure the word gem really applied to anything we saw that day, but the cultural diversity we encountered within a 14-mile radius was certainly a breath of fresh air.

15 July 2019


Air travel has lost it's charm. 

Although, come to think of it, it never had any.  Twenty years ago, when it was normal to sleep 8 hours every single day, shaving off two hours to catch a plane and then missing the next night thanks to 21 hours of non-stop travel was misery.

Ten years ago, when we were more accostomed to a mere 6 hours of sleep and could get 16 hour flights for a reasonable price, it should have been more tolerable, but airplane seats are designed for maximum neck and back pain so instead the misery ratcheted up a notch.

By the time we learned a few tricks to minimize pain, airfares had soared to the pont that we were back to 26 hours of travel (car + plane + train) and a United Basic Fare.  Among the lack of amenities of the Basic Fare is an inability to check-in online, so you have to take yourself to the ticket counter.

Although you can't beat $42 for a one-way car rental between SC and PIT, driving through Pitsburgh (there is no road around it) at rushhour on an afternoon with drenching thunderstorm rains took a bit longer than planned.  So we were rather time stressed when we checked in at the counter.

Where, to save money, they have 8 kiosks (5 of which were working) and only two humans, who were completely overwhelemed by having to do all the things a kiosk can't do (which is the majority of check-in activity).  So there were short lines for the kiosks, followed by long lines for the humans to check our bag.  Another twist of the Basic Fare is that you can't choose your seats, and they don't even assign them until you are at the gate, so then we had to stand in line at the gate to get seats.

But, seeing as our plane hadn't even shown up yet due to the thunderstorms, we at least had plenty of time.  About 1.5 hrs of delayed time, in fact.  Which meant that at deplaning in the next airport we practically trampled our fellow travelers to make sure we made our now tight connection.

Which we needn't have done, because our next plane was in maintenance.  For an hour.  Then another half hour.  Then another half hour.  In the meantime, all the vendors closed for the day so E. couldn't even get a coffee.  Then the crew showed up, but still no plane.  Finally, 2.5 hours delayed, we took off for Frankfurt.

But even all that might have been tolerable, had it not been for the food poisoning.

Fortunately, because half the time they are missing from the seat pockets, due to a history of motion sickness in small propeller planes I had an old motion sickness baggie tucked away in my backpack.  Better yet, I had a window seat, so I could swivel away from the general public to concentrate better on heaving.

Which was necessary because E. was three seats away, so it was a total stranger who asked if I needed help, offered water, and exchanged my baggie for a fresh one after the first hour.  [The kindness of strangers rather renewed my faith in humanity.]

By the second hour (down to bile), I was drenched in sweat, freezing cold, shivering uncontrollably, periodically briefly losing consciousness (something I normally do when nauseated), and too weak to talk.  So when the plane landed, and they were anxious to get rid of me, E. had to half carry me off the plane and plunk me in a Lufthansa wheelchair.

Which he wheeled (while juggling two backpacks and a duffel-bag and walking strangely because he had yet to find a lou) to the paramedics who had been called, who without charging us an Euro cent measured my blood pressure and glucose levels, declared me out of danger after I was able to speak a few intelligible words, and recommended we get something from the pharmacy to stop the nausea.

So then he wheeled me through the airport, in and out of hard-to-find elevators, in search of the pharmacy, where he obtained a classically named product.  Unlike the Americans, who like to name their medications euphemistically or with a pleasant-sounding marketing term, the Germans call a spade a spade.  In this case, the brand name of the anti-nausea drug was Vomex, which just thinking about causes a little nausea.  Also, who in the world designs an anti-nausea PILL????  No, I did not keep the first one down.

Although by this time I was heaving less frequently, I was still unable to walk, so then E. had to wheel me off to the baggage carousels to fetch our suitcase.  Now picture him wearing two backpacks, pulling a suitcase + duffel bag with one hand, and steering a wheelchair with the other--occupied by a listless blob huddled over a baggie.  All the way to the train station (more remotely located elevators) in the basement of the airport.

Where, of course, he had to find a new train connection, because (despite his precaution of booking a four hour connection) between the flight delay and my illness we had missed the one he had booked.

Here things start to turn around, because E. was delighted to discover that by pure accident he had purchased a ticket that was valid all day long.  So we had only another half hour to wait, during which he returned the wheelchair after plunking me on a freezing cold metal bench--but failed to have time to fetch a coffee.

By the time the train arrived, I could form sentences and managed to walk all by myself the 15' required to get to a second class seat.  Where we made ourselves comfortable for the next 3.5 hours (still no coffee), with a minimum of heaving and even a few minutes of sleep (after making E. sit next to me so I could steal his body heat).  We happened to have arrived on the German Father's Day, which is traditionally celebrated by fathers gathering together to get a bit drunk, so the train conversations were livelier than usual.  Local color!

The only truly sad part of this entire tale was that for WEEKS I had been planning to deplane and head directly for a bakery to get a nice fat salty German pretzel (which are a little leathery on the outside with soft white bread inside).  That fantasy is probably what jinxed it.

The good part, of course, is that future flights can hardly be less charming.

Postscript:  The subsequent week wasn't much of an improvement, with severe jet-lag induced insomnia, a nearly dislocated jaw from finally falling asleep on the too-short couch (J.), a mild bout of food poisoning (E. this time), and a very close-call (J. fell through an open attic door).  We may be getting a bit old for this.

01 July 2019

Restoration Ecology II: FMT

We will never forget the detonations of New Year’s 2011.  Not the celebratory fireworks; we fell asleep before those began.  But on January 1st we went grocery shopping, and apparently picked up a stomach flu from the shopping cart handle.  Within hours we had our own, gastrointestinal, explosions.  Neither of us had ever been so sick before.

Although the acute illness was over within the week, the recovery was strangely slow and the medical profession uniquely unhelpful (all they did was diagnose IBS and recommend life-long medication to treat the symptoms but made no effort to address the cause).  It was evident, however, that we just weren’t digesting things properly and no amount of probiotic yogurt seemed to help.  Nonetheless, gradually over the next year things improved, until about two years later we concluded we were close enough to ‘back to normal’ to stop seeking medical help.

We were wrong.

In 2014, when I last researched the topic of restoring a healthy gut flora, we realized that close enough had never become actually normal.  So we got serious about it and tried elimination diets followed by a series of different probiotics, and even made a concerted effort to eat a little dirt from the veggies grown in our childhood gardens.  Things seemed to get better, so we concluded we could stop worrying about it.

And again, we were wrong.

In 2017, I had some metabolic testing done, which showed that I simply haven’t been absorbing nutrients properly.  My diet is almost textbook ideal, and yet I had deficiencies in zinc, B6, and some amino acids, as well as markers for inflammation and excess Clostridium.  Conclusion:  leaky gut and imbalanced gut biome.  Under the watchful eye of a genetic nutritionist, I began a year of more elimination dieting and of a whole lot of supplementation:  all kinds of specially formulated vitamins, oregano oil to kill off the Clostridium, and a new series of probiotics.

Which apparently only shifted me from an excess of Clostridium to an excess of Staphylococcus.  Great.

By chance, I tripped across something that did make a difference:  one doctor prescribed Zinc citrate (in which the zinc is attached to citric acid), which I apparently didn’t absorb at all, and another Zinc liver chelate (attached to an amino acid), which resolved my infamous shoulder muscle stiffness within 3 days.  In other words, some of these supplements come in different forms and you have to find the form that works for you!  Which is, of course, a whole process of trial and error in and of itself.

Meanwhile, as I was reminded when I ran out of zinc for a week and my shoulders turned into rocks again, the supplements address the symptom but not the underlying cause:  I’m still not absorbing the zinc in my food.

However, I also tripped across something else that made a difference:  the keto diet.  Without going into detail, I will simply say that within days of starting this diet my output went from suboptimal to nearly picture perfect.  However, three months in and I still wasn’t absorbing zinc.  Meanwhile, two different applied kinesiologists kept telling me the same, somewhat nutty thing:  based on their examinations (not to mention the complete capitulation of the orthopedic physicians I’ve seen) my neck pain is not mechanical in origin.  Instead, it can be traced to my gut.  And crazy as it sounds, I am sure something is up with my gut because I always have more insomnia when I'm on probiotics.

So can I fix this by changing what goes into my mouth?  After 1.5 yrs of experimentation, the answer appears to be no.  Why?  Probably because my gut flora is so depauperate that the pitiful introduction of half a dozen species (all that you get in a yogurt or probiotic supplement)—which might not even survive long enough to make it to the intestine to do their work—just can’t make up for the loss of the species that should be present.  Recall that a healthy gut biome is dominated by 30-40 species but contains hundreds of different species of bacteria (and small amounts of other things, like fungi) that interact to regulate their own ecological community.  In terms even I can understand:  what should look like an old-growth forest resembles a recent clearcut instead.  The most basic functions persist, but all the good stuff that makes you strong and resilient is missing.

If I can’t fix it through the front door, then what about the back door?

The back door in this case involves a fecal transplant (inoculation of an unhealthy intestine with bacteria-rich fecal material from a healthy donor, officially called Fecal Microbiota Transplantation or FMT).  The idea here is like wolf reintroduction--ecological restoration, but within the human organism.  By reintroducing extirpated bacterial species, ecosystem balance is restored, and with it all the great things our gut flora does for us, which includes supporting our immune system, regulating blood sugar, and promoting sleep and cognitive functioning.

But, as a friend of mine put it recently, there are things we don’t usually want to share with other people and this sounds like it might be one of them…  Putting the gag factor aside, she does have a point.  First, unscreened donors can pass along nasty diseases and chubby ones may pass along obesity.  Second, although anonymous donation banks DO exist (I am not making this up), there are in fact strong geographic trends to gut floras reflecting early childhood exposure and families share more bacteria among themselves then among strangers.  So while an anonymous donation may help a lot—a 90% cure rate for those with severe C. diff infections—it probably won’t get you back to what you consider ‘normal’.  The perfect donor?  A healthy relative who grew up where you did, eats a pretty healthy diet, and has had minimal exposure to intestinal perturbations (i.e., very little antibiotic use and no exposure to parasites)—who is not squeamish.  [FYI, donation banks screen for diseases and parasites.]

Ideally, restoration would involve both the small (where the bulk of nutritional absorption takes place) and large intestines, putting extirpated species right back where they belong.  But we don’t have good access to the small intestine, so we settle for FMT
.  This is done using the same hoses they stuff up you for a colonoscopy:  to get a nice clear picture, they shoot water into your intestine, but you can also shoot in FMT slurries.  This is what they do at some FDA approved clinics (with a 98% success rate); in others, you can get a newly developed orally delivered commercial freeze-dried capsule that works (supposedly) almost as well.  Unfortunately, the FDA has only approved FMT to treat recurrent C. diff infections and, recently, also decided to regulate the FM part as a “biological agent” (which, of course, it is).  So every clinic in the country that had been offering FMT to non-C. diff patients dropped it like a hot potato in 2016.

So the rest of us get the DIY version, which is literally a shitty enema.  Some of you may prefer to stop reading now, assuming you’ve made it this far.

There is a little prep work.  For several months in advance, both donor and recipient should make a concerted effort to eat a pretty clean diet, cutting out the prepared foods, most sugar and trans fats and preservatives and anything else that might irritate the digestive tract.  The recipient should redouble efforts to improve gut community composition, so a little something to combat the bad bacteria and some probiotics to help balance out the rest.  The night before would be a good time to clean out the pipes, using a mild laxative like Cascara bark or Epsom salts.  On the other end (literally), it might also be wise on the morning of the FMT to take a little Imodium to slow things down a bit and to either fast or eat sparingly of known stagnaters like aged cheese and crackers.

Then you wait, and pounce.  Speed is actually of the essence, because the bacteria that fate expelled from the donor don’t fare well when exposed to oxygen.  So as soon as a deposit is made into a sterile container, the container should be closed and rushed to the kitchen.  True, not the usual procedure, but an exception is made for this one day.  Wearing some gloves, you should transfer 100 g. of material (tossing the rest in the freezer for next time) into a blender base that already contains 100 ml. of sterile saline solution (0.9%=9 g/liter) without preservatives.  Blend to the consistency of paint, adding a little saline as needed up to 250 ml total volume, and pour through a sterile cheese cloth filter directly into a sterile enema bottle.  Then you can pop it in the fridge, relax a little, and wait until the day winds down.

Then, while lying down on a comfortable, leak-protected (e.g., towel over a garbage bag) couch, the recipient inserts the enema bottle, gently squeezes to complete the FMT, slips on a pair of adult diapers just in case, and makes themselves comfortable for the next few hours.  It is advised to flip from side to side periodically and massage the abdomen to work the material a little further upstream.  And, of course, to make a concentrated effort to keep it in there for a good 6 hours.

Then, of course, you wait for the miracle.  However, since a one-time FMT via enema has about a 52% success rate for repopulating the microbial community, the miracle might have to wait until you do it all a second time:  multiple enema FMTs have a 96% success rate.  Hence the material in the freezer (which studies have shown works just as well as fresh).

One reason the FDA hasn't approved FMT for just anyone is that very little research has been done to demonstrate that it actually helps the myriad things Internet blogs tell you have been cured in this fashion, such as irritable bowel syndrome (IBS), Crone's disease, chronic fatigue syndrome, or even bi-polar disorder.  So on the one hand we have a simple and cheap procedure expected to have relatively little risk (assuming donations have been screened), but on the other not much more than hope that it will actually do you any good for many conditions.

But hope dies last!

15 June 2019

Restoration Ecology I: The Community

The irony is that I’m a community ecologist.  I should have known better.

Ecologists come in all sorts, depending on the personal obsession:  some have a thing for plant physiology (autecologists), some get excited about interbreeding groups of the same species of plants or animals (population ecologists), and yet others get hot and bothered over assemblages of different plant species (phytosociologists).  This latter group, to which I once belonged, falls under the umbrella of community ecology—the study of everything possible about whomever lives together in a given spot.  Say, all the subcanopy epiphyte species who happen to be growing in the Oregon Coast Range when a commercial moss harvester (or a facsimile thereof) walks by, burlap collection sack in hand.

So, although I will admit that mostly what we scientists know is how friggin’ little we know, I thought I knew enough about ecological communities to at least understand what I was up against with the gut microbiome.  Lol!!

In order to wrap our head around them, we used to simplify communities to static entities:  a particular composition (whatever we found the day we looked) of different species, all doing their thing and interacting yet somehow magically maintaining a kind of natural balance—homeostasis/equilibrium.  These days, we’ve come to grips with the fact that communities are instead insanely dynamic:  resources fluctuate wildly, so populations rise and fall and whole species live or die.  The only constant in a community is survival of the fittest and the exploitation of every individual of whatever opportunities arise.  It actually is a dog-eat-dog world.

So how do you “understand” a community whose composition is constantly in flux?  The relative balance of different species is perpetually shifting, so the needs of the dominant community change and their impacts on the environment differ.  Until very recently, we viewed these changes as fluctuations within the fairly fixed range of possibility created by the relatively stable post-glacial climate of the past 10,000 years:  rather than one equilibrium, there’s a naturally normal range of equilibria reflecting the range of environmental conditions.  But environmental conditions can change over time, so our understanding of “normal” depends on our temporal reference point.  [Until climate change renders our reference points moot.]

Further, by definition communities exist within a given geographic area.  Sometimes they are clearly delineated:  a lake, a patch of remnant forest, etc.  Mostly, however, the boundaries are unclear or very porous:  a band of elevation on a mountain, a valley between two ridges, a river that runs through it.  In almost all cases, communities are not insular because individuals and species can come and go—like the Yellowstone wolves that fail to stick to park boundaries.  Or on a much bigger scale the transplantation of exotic species from other continents, with sometimes disastrous results (Dutch elm disease literally wiping out the once dominant chestnut, zebra mussels clogging up ships in the Great Lakes, jumping Asian carp swamping boats on the Mississippi, kudzu swallowing the southeast, and emerald ash borers, hemlock woolly adelgids, and Asian longhorned beetles gobbling up our forests).

Ecologists might pride themselves on having embraced the natural dynamism of ecosystems, but human societies aren’t so flexible:  we’ve built up systems (agriculture, industry, cities) that depend on the way things have always been (at least since the last ice age).  So every perturbation to the expected natural range of variability in the system incurs a cost—climate-change induced flooding destroys infrastructure and invasive species reduce crops.  We are already spending a lot trying to cope with these unnatural fluctuations, and it’s only going to get worse.

Meanwhile, however, the ecologists have kept plodding along, and have discovered something obvious but kinda useful:  the more diverse your system, the less it will change under the influence of an external input (like an exotic species or a temperature change).  So all we have to do to protect the things our ecosystems do for us (“ecosystem services” like clean our air and water and feed us through pollination) is to keep them diverse.  This concept is neither new nor particularly remarkable:  after all, my broker also insists on a diversified portfolio to better weather the ups and downs of the market. 

[Pause for a moment to appreciate the brilliance of the ancient Greeks, who used the same root word for both economics and ecology because both involve the management of resources dear to us.] 

But the idea of restoring or adding diversity to our societal systems (sustainable agriculture, sustainable development, etc.) has met resistance because we have simplified them so much that adding back enough diversity to make our ecosystems sufficiently resistant to change, and thus our desired ecosystem services more resilient, is also going to cost us a lot.  Just a lot less than if we don’t do it.  This is where we stand in 2019:  having to choose between two annoyingly expensive alternatives.  (Whether or not we’ll have the political will to actually make a choice is another matter.)

My actual point?  Today’s tirade is not about ecology per se, but rather that (1) communities are not static but naturally constantly subject to change, (2) communities not only change within the natural boundaries of the time and place in which they exist (endogenous variation), but are subject to influence by external inputs (exogenous variation), and (3) communities are more resistant to negative inputs (more resilient) when they are more diverse.

This includes the communities upon which little light has been shed because they are hidden away in stinky, dark crevices seldom visited by the faint hearted.  The thing about gastrointestinal communities is that, literally, we don’t know shit.

Despite our ignorance about the composition and ‘normal’ variability of these communities, however, our best approach toward maintaining the ecosystem services these communities provide for us is to do what’s best for any community:  maintain diversity.  The most extreme examples of a loss of equilibrium in the gut microbiome—blooms of Clostridium difficile (C. diff)—result in potentially fatal catastrophic system failures (extra credit to SMO for multiple demonstrations).  Not surprisingly, the treatment that has been found to resolve symptoms in 90% of patients and is thus now approved by the FDA for recurrent C. diff infections is the restoration of the gut microbiome through the reintroduction of extirpated species.

This treatment is not yet approved, however, for lesser disruptions to the gut microbiome, leaving us with home remedies ranging from a sudden predilection for kombucha and kefir to over-the-counter probiotic supplements, which typically contain 3-12 different species of bacteria chosen because they can survive being raised, processed, packaged, shipped, and stored industrially (i.e., ones that tolerate air and light and room temperature
not exactly common conditions in the colon).

This is where I should have known better:  although it is to be expected that the gut microbiome will be influenced by inputs we provide (whether E. coli contamination or yogurt with beneficial probiotics), it is not really realistic to expect that eating a little yogurt or popping a couple capsules (assuming these bacteria even survive the stomach-acid gauntlet) can restore the highly diverse natural gut community.  That's like saying reintroducing a handful of cool lichens to a clear-cut will restore an old-growth forest.

But you've got to start somewhere!  More on that in part II.

01 June 2019


I am a duplicitous liar.

I don't mean claiming I'm 39, complimenting your haircut, or swearing I didn't see the light turn yellow, although all of those may have happened recently.  I mean that my brain receives inputs of information, processes them, and disseminates output that is totally misleading.  Daily, for about eight years now.  Who knew you couldn't trust what your brain told you?

Mostly what it's been telling me is that I have a fundamental problem with my neck.  So it hurts, a lot, and for a long time, even though over the past decade my primary physician has tested me (or referred me to others for imaging and testing) for everything known to mankind and determined that I am fundamentally injury free and healthy, except for totally inexplicable chronic pain, insomnia, and perpetual hunger...  I know, we're all rather bored of this by now, but lately I've learned a new angle on this old theme--that the problem does not lie with my neck.


Although I've had this problem for years now, I've only very recently started to finally piece it together.  The worst pain is when instability in the neck vertebra (usually C2, C3, or C4) causes nerve pain.  Nerve pain is bad, because it only stops when it decides to--there is nothing you can do to make it go away (but you can make yourself go away, by taking something to put you out).  [For some people, gabapentin does reduce nerve pain--I've not tried it yet because the side effects are nasty and it is very habit forming.]

According to my physical therapist, the instability in my neck vertebra arises because the muscles running up my neck (the scalenes) are frequently in spasm, which pushes my head forward and out of alignment.  I knew that--the previous physical therapist had me completely change my postural habits five years ago, reducing computer work to half time, shifting to a standing desk, getting a book holder to read by, using a bolster anytime I have to sit for more than a few minutes, etc.  Focusing on this symptom rearranged my life, rang the death knell for my already flailing career, inspired an invalid mentality, and probably delayed my recovery by five years...

Anyhoo, my current physical therapist then went on to say that my neck muscles are in spasm because other muscles (suboccipital muscles, where the skull and vetebral column come together) are in spasm.  And THESE muscles are in spasm because my thoracic curve (upper part of spine) is funky.  This funkiness is partly inherited (a little thoracic scoliosis, the bobble-head walk), partly bad posture (this damn computer), and partly because my shoulder muscles are super tight.  This latter part I also knew about--a massage therapist in Germany once told me she'd never seen anyone with shoulders as tight as mine (boy did she love to beat on them!), and Barbie put one of her kids through college massaging those muscles weekly for five years.  Every night I try to reach that tight little knot right between my shoulder blades with a foam roller, but I can never quite get it.

My PT's logic about the mechanics of neck pain only got me so far, though, because after frankly admitting that he had no clue why my shoulder muscles were in spasm, he resorted to treating the only part within his bailiwick:  stretching tight muscles, mobilizing stuck joints, etc.  All good for treating the proximal cause of the neck pain, but ignoring the ultimate cause of the tight musculature.  Further, he was pretty pessimistic about my ever being able to live without vertebral instability, which I not only didn't want to hear but also didn't concur with what my other therapists have been telling me.

Since last fall, two of those other therapists have been applied kinesiologists who keep telling me that I am fundamentally healthy and my neck pain has nothing to do with my neck or shoulders but is rooted in my digestive tract.  Naturally, I initially thought they were crazy, but kept going back because their chiropractic adjustments helped--at least temporarily.  Using acupressure diagnostic techniques, however, they also kept coming back to the same conclusion.  Then one of them put me on zinc, and it helped for a little longer (briefly turning my shoulder muscles to "butter", as Barbie put it).  Since that was the first thing to help in five years, it caught my attention.

So I asked him about the perpetual hunger and he told me to pinpoint the exact location of this sensation.  Turns out it doesn't stem from my stomach but comes from directly below my belly button.  Remember that.

Meanwhile, my dietary travails had driven me to seek the aid of another therapist, who styles herself a "health detective" (nutritionist).  After testing every substance emanating from my body, she determined that I am fundamentally healthy except my body chemistry is completely screwy (enough to cause insomnia) because my gut microbiome is messed up.  Specifically, I have too many of the bad kinds of bacteria and too few of the good ones.  Such a chronic massive bacterial imbalance causes inflammation of the lining of the small intestine.

After a little research, I discovered something about our gastrointestinal tract.  Large sections of our GI tract, for good reason given what goes on down there, have very few pain receptors.  Consequently, two interesting (for me) things can happen when something isn't right.  First, rather than sending a clear and discrete pain signal, the region sends out a diffuse sensation that can be misinterpreted as something familiar--like hunger.  Which explains why eating doesn't make it go away.

Second, these diffuse signals can also activate motor systems and lead to prolonged motor activity (e.g., muscle contraction) in other parts of the body (just like having a heart attack can make your arm hurt).  Some of these pathways have been mapped by Eastern and Western physicians alike:  e.g., your kidneys can make your knees hurt and the gall bladder refers to one side of your neck.  Guess where the small intestine refers?  Bingo--just below your belly button!

What's more, the stomach/abdomen refers to the spot between your shoulder bladesDem Bones had it right:  the shoulder bone is connected to the neck bone.

So it goes like this:  stomach flu (2011) slaughtered the intestinal flora, the resulting microbiota imbalance led to nutritional deficiencies (e.g., zinc) and inflammation of the small intestine, the zinc etc. deficiencies indirectly cause shoulder muscle contraction while the ongoing inflammation refers as both hunger centered below the belly button and further contraction of the shoulder muscles, the shoulder spasm triggers neck spasm, the neck spasm triggers vertebral instability, the vertebral instability causes nerve pain, and the nerve pain drives me nuts.

OK, it's still just a hypothesis, and you've seen me run down a few of those already.  But it fits, and I've literally run out of other hypotheses, so I say we go with this one.  Besides, the worst case scenario is that it turns out I've lied to myself...

15 May 2019

Keto: The Verdict

In summary, E. survived and I loved/hated it.

Although I like to think of myself as generally pretty capable, I must confess to a case of maßlose Selbstüberschätzung, having grossly over-estimated my ability to quickly conquer this diet.  I read all the caveats and all the tips, and figured my extremely detailed dietary plan would prevent us from running aground.


To be fair, it was not a complete failure.  There is no doubt that the exclusion of most carbs improved my digestion, reduced my insomnia, and really did make me “smarter”.  Further, during the initial ten weeks of a 24% reduction in caloric intake, we both lost the weight we had targeted.  But not without just as much hunger (despite all those “satisfying” fats) as we had on the Mediterranean diet last time.

As well as a slew of other complications that we could have lived without.

Recall that the ketogenic diet involves switching out carbohydrates for fats, so our previous diet with the bulk of our calories coming from carbs (oatmeal, rye bread, milk, fruit, butternut squash, etc.) was replaced with one with a very low daily net carb count (20/30 g.) with the bulk of calories coming from fats (avocado, olive oil, butter, eggs, cheeses, chia seeds, nuts, etc.).  [I’m not a big fan of meat fat, so that did not increase.]  Although it is tempting on a diet like this to simplify to hamburger, pickles, and buttery omelets, we maintained a very diverse diet with as many vegetables as we could slip in and even managed to stay vegetarian more than half the time.

In addition, having done our homework in advance, we made a concerted effort to increase our intake of water, took daily vitamin supplements, and used lite-salt (50% potassium) and aimed for a salty bone-broth soup every day to get enough electrolytes.  We covered all the bases.

And still struck out.

Don’t get me wrong:  we managed to go ketogenic after a week, right on schedule (according to urine test strips and later a breathalyzer).  The first few days we were drawing down our carb reserves and hadn’t really started breaking down our fats yet, so our ketone levels were low and we had some classic keto flu symptoms:  headache, fuzzy headedness/loss of concentration, poor sleep.  You know, the usual when you are starving.  But by day 3 I noticed I could think again, on day 4 that my eyesight seemed unusually sharp (that was very nice), and on day 7 I felt clear-headed and energetic.

And so dehydrated that my kidneys hurt.

When they say you need to drink more, they apparently mean you need to double your intake of water.  I already consume ca. 10 cups per day (mostly tea), and I found it extremely difficult to force myself to drink much more than that—so it just wasn’t enough.  I struggled with this for at least two months.

In the second week, our ketone levels stabilized at the normal level for ‘deep ketosis’ and we stopped testing because it was clear we were in
and were going to stay in, as long as we stuck to the diet plan.  Sticking to the plan was not the hard part; after all, I had planned out every gram and can be zealously disciplined.  But cooking three times a day—and actually measuring and weighing (love that scale!)—was a huge time commitment.  Planning and implementing this diet became a part time job that cut into productive work time.

Which was a pity, because even though I still wasn’t sleeping yet, I noticed that the usual repercussions of insomnia were curiously absent:  little fatigue, no headache, concentration was still good, no hypoglycemic symptoms.  In a word:  I finished my daily crossword in less than five minutes.  Those little ketone bodies were doing their thing and crossing the blood-brain barrier, and my brain was greedily gobbling them up.  I got a lot of work done.

Then, around week 4, I started doing this thing that I vaguely recall normal people do:  falling asleep in less than an hour.  Possibly less than a half hour.  Without drugs.  And dreaming!  OK, I often woke up too early and never really felt refreshed, but at least I didn’t have to use drugs all the time.  And I had enough of a brain that I could work the next day.  I taught my entire February webinar without drugs
—that may be a record.  So in that sense, the keto diet worked and I loved it!!

At the same time, however, other not so great things began to happen.  My fingernails got super thin, so I had to add a calcium supplement.  I got nighttime Charley-horses and my gums started to recede, so we upped our potassium and magnesium.  The kidneys continued to complain now and again, so we added lemon juice to our water to avoid kidney stones.  And by the second month, serious evening fatigue began to be a problem and we suspected some loss of muscle mass.  Sometimes, I also had the feeling that portions of my skin (especially on my legs) had simply gone numb...  We fiddled with everything, trying to make sure we weren’t deficient in anything, but the reality was that we were starving ourselves and it was time to increase back to a maintenance level of calories.  End of dieting part of diet.

Fortunately, we petered out around the time we had wanted to stop dieting anyway, having reached our weight goals.  So our next experiment was to see if we could gradually transition out of using fats for energy and back to using carbs by upping the carbs from 7% to 10% of daily calories.  Because of our worries about muscle mass, we decided to increase our protein ratio from 20% to 30% too.

And that was a mistake.

Although we managed to remain in ketosis at least some of the time, that excess protein plus carbs was enough to lessen our need for ketogenesis, which greatly reduced those wonderful ketone bodies.  Within days my eyesight was worse, the crossword took longer to complete, my digestion got wacky, my sleep worse, I didn't feel too good after a day without sleep, I regained 5 pounds in as many days (mostly water), and I developed food cravings.  Yikes
this is what life was like before keto!

So we fiddled again, and went to 10% carbs, 20% proteins, and 70% fats for a couple weeks.  Almost immediately we started to feel better; saw, thought, and slept better and had fewer cravings.  The lesson?  Keto is an imperfect zero-sum game.  The body is always looking for carbs first:  if it finds enough of them, great (use them!); if it finds virtually none of them, also great (use fats!); but if it finds some but not enough, it uses up the carbs but is slow to move on to the fats--and that lag time leaves you miserable.

Not content to accept this theory on face value, we naturally decided to give one more shot to a gradual transition off keto.  So we spent a couple weeks at 20% carbs, 25% protein, and 55% fats.  And confirmed that both the costs and the gains of keto were gone.  The thirst problem resolved, as did the muscle cramps, sore kidneys and gums, and we had plenty of energy for work and exercise.  But my digestion fell apart immediately, the insomnia returned along with the misery of sleep deprivation, my eyesight slipped, and I resumed my normal, pathetic level of cognitive function.  And, stupid me, because we had stopped the calorie restriction, most of those new carbs went straight back on my belly.

I miss my ketone bodies!!

So then I figured, if we've lost all the gains anyway, we might as well go back to a relatively normal diet and not have to work so hard to figure out what to put in our mouths.  Hence 45/20/35%, which isn't too far from what we were eating before we started keto.  That lasted about two days, because I ended up exactly where I was before going keto (adding to the rest frequent bouts of hypoglycemia and insane hunger).  Even EZ complained of feeling sluggish with less mental clarity.  So we backed up to 40/30/30%, then 35/20/45%, and then 35/25/40%.  And there I shall stay throughout the summer, regardless of the symptoms, because nothing is going to stand between me and French croissants and apricots.

Until the fall, of course, when I try it all again.  But next time I will be so much smarter about it...maßlose Selbstüberschätzung here I come!

PS:   Next time, and I'm sure there will be a next time, it really will go more smoothly because now I know what macros to follow (8/19/73% is what we settled on), that I must double my water intake, which supplements to take (calcium, potassium, magnesium, extra sodium), and we've already worked out some recipes that we can tolerate.

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.

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!