Fragments From Floyd

a.k.a. Morgellons Disease. Initially dismissed as nothing but a kind of mental aberration, now with more than 12,000 “registered” sufferers from all 50 states and more than a dozen foreign countries, CDC is on the case. 

The Centers for Disease Control (CDC) in the United States announced the launch of an investigation on ‘Morgellons Disease’ in January 2008 [1], after receiving thousands of complaints from people with this bewildering condition, which it describes as follows [2]: “Persons who suffer from this unexplained skin condition report a range of cutaneous (skin) symptoms including crawling, biting and stinging sensations; granules, threads, fibers, or black speck-like materials on or beneath the skin, and/or skin lesions (e.g., rashes or sores). In addition to skin manifestations, some sufferers also report fatigue, mental confusion, short term memory loss, joint pain, and changes in visions.”

Morgellons Disease first became known in 2001, when Mary Leitao created a web site describing the illness in her young son, which she named after a 17th century medical study in France describing similar symptoms [3]. Until then, people with Morgellons Disease have been diagnosed as cases of “delusional parasitosis”, in which the symptoms are deemed entirely imaginary, and lesions allegedly due to self-inflicted wounds.

Some early evidence (with a very small sample size at this point) suggests a bacterial agent associated with Morgellons–all the more significant in that this particular bacterium (Agrobacterium) is everywhere, has the ability to transfer some of its genetic material into organisms other than fellow bacterial types, AND that this organism is an agent in genetically modifying plant crops. (Are you hearing the intro theme to X-files yet?) And some fringe groups (natch) are shouting ET GO HOME!

I’ve followed this for more than six months and it only gets more interesting. If you haven’t heard about this previously unknown and very rare condition, my guess is that like WNS in bats over the past six months, the topic will snowball as CDC either substantiates or refutes the legitimacy of this “new disease”. Wikipedia has a good set of resource links of you’re interested and here’s a link to Google News archives for 2008 on the topic to date.

Some politicians seem to feel we really don’t need bother with the messy unpredictable and unprofitable world of rank and file and mostly nameless creatures that unfortunately for them do not vote or contribute to campaigns or to the tax infrastructure or to the patriotic consumption of goods and services.

Might be wise to take a second look, politicos and myopic number-crunchers because the (insert the name of any unsung and obscure living species here) that you think worthless today could save your life, our lives tomorrow.

While I’m not suggesting that nature’s creatures only have a value if they can be exploited for OUR good (as some seem to have it), nevertheless, as we destroy coral reefs and rain forests, opportunities like these two examples might be lost for good. Just me thinking out loud–which is after all the nature of the blog from Goose Creek.

Alligator immunity may be the key to help us cope with the “superbugs” that are no match for antibiotics anymore.

Clams work for free to filter bird flu viruses.

I suppose it was in seeing salamander tails and legs grow back after being turtle-munched in a high school biology lab terrarium that I first became fascinated with the possibility of body part regeneration.

How does a mindless tissue know how to shape the part, where to put things like skin versus muscle, and how does it know when the tail or leg is big enough? Why doesn’t it just keep on growing or stop short?

I predicted twenty years ago (after reading Robert Becker’s Body Electric) that in my children’s lifetime, we would use what we would learn about electrical fields and life forces to regrow amputated fingers and toes–or more. What I didn’t figure into the mix was the regenerative potential recently discovered in the most uninteresting of human tissue elements that a college biology freshman is forced to view under the microscope: intercellular matrix. It is the amorphous thready goo that exists between the unique cells of all connective tissue.

But it turns out that this stuff just might be the miracle dust of fiction. The video on the CBS site that describes this research is recommended. This stuff is already in limited use.

That powder is a substance made from pig bladders called extracellular matrix. It is a mix of protein and connective tissue surgeons often use to repair tendons and it holds some of the secrets behind the emerging new science of regenerative medicine.

“It tells the body, start that process of tissue regrowth,” said Badylak.

Badlayk is one of the many scientists who now believe every tissue in the body has cells which are capable of regeneration. All scientists have to do is find enough of those cells and “direct” them to grow.

“Somehow the matrix summons the cells and tell them what to do,” Badylak explained. “It helps instruct them in terms of where they need to go, how they need to differentiate - should I become a blood vessel, a nerve, a muscle cell or whatever.”

Paradoxically, it may be support from the military (where there is a steady supply of missing body parts–including burned skin) that will carry this research forward.

Expect to hear a lot more about this before long. Who knows–it might even grow back that pinky finger your son will offer to the hobby shop scroll saw in 2015.

There is speculation (of course, and in the absence of a smoking gun bacterium or virus) that behavioral changes due to warmer winters is to blame for the so-called White Nose Syndrome in bats. The fungus is only taking advantage of bats so weak they can’t wipe their noses. Here’s one wildlife pathologist voicing the global warming explanation:

Stone said the bats are dying from starvation and weakened immune systems resulting from the unusually warm late fall and winters during the last several years, which has kept bats flying even when fewer insects are available to eat.

That has led bats to begin hibernation with insufficient fat reserves, prompting them to starve and sometimes leave the safety of caves in search of food during cold weather, which is usually fatal.

“The good news is, this is not going to wipe out all the bats. All the bats are not in tough shape, a number of them have enough fat,” said Stone. “There are a lot of bats that have died that don’t have any fungus.”

Does the theory hold water? Maybe. It seems possible that white-nosed northern state bats (NY, VT and MA) might be less well adapted to stay in winter hibernation when temps are still warm while southern state bats have long done so.

Also with average winter temperatures a few degrees warmer hundreds of miles south there are probably still at times enough cold-blooded insects on the wing for bat food. On a warm December day, the Asian Ladybird Beetle swarms alone could feed a legion of bats where we live in Southwestern Virginia and the cost of leaving the roost would well be compensated for by a good meal. Not so with warm winter spells to the north.

But early on, a strong correlation was noted between caves where WNS was found and those visited frequently by cavers. Here again, perhaps the added stress of hibernation disruption compounded the metabolic stress the bats were under.

My guess is that we’ll have a handle on WNS long before we understand CCD in bees. Stay tuned.

The hand specialist I saw last week was not surprised. “Massage therapists and PTs have a high occupational risk of the kind of joint damage you have” he told me “due to the frequent compressive loads on the thumbs from manual modalities like trigger point massage.” Small comfort and not news.

But we all run the risk of using our joints, tendons and muscles in ways to which they cannot adapt.

The American Society of Hand Therapists issued a consumer alert in January saying that handheld electronics are causing an increasing amount of carpal tunnel syndrome and tendinitis. With that warning, the society included directions on how to properly hold the devices, urging users to take breaks and, if possible, place pillows in their laps so their wrists are in a more upright position.

According to the Bureau of Labor Statistics, ergonomic disorders are the fastest-growing category of work-related illnesses for which it receives reports. In 1981, only 18 percent of all reported illnesses were repetitive strain injuries, known as RSI. By 1992, that figure had grown to 52 percent. link

The consequence of repetitive strain is often chronic tendon injury–previously and in apparent error referred to as “tendinitis”. -itis indicates an inflammatory condition, and it turns out that for the most part, we we suffer from is “tendinosis”.

The suffix “osis” implies a pathology of chronic degeneration without inflammation. Doctors prefer the term tendinosis for the kind of chronic tendon injuries that most of us have. The main problem for someone with tendinosis is failed healing, not inflammation; tendinosis is an accumulation over time of microscopic injuries that don’t heal properly. Although inflammation can be involved in the initial stages of the injury, it is the inability of the tendon to heal that perpetuates the pain and disability. Most of the pain associated with tendinosis probably comes not from inflammation but from other irritating biochemical substances associated with the injury. tendinosis.org

If you want to know more, I suggest you read Overuse Tendinosis, Not Tendintis in The Physician and Sports Medicine. It does matter, because if your doctor or therapist is treating an inflammation or if you think simply taking NSAIDS (non-steroidal anti-inflammatory meds) is going to do the job, I have bad news for you.

Tendinosis is much, much easier to get into than it is to get out of. And we have scant remediation other than avoiding the offending injury (Blackberry, Nintendo or your job!) and gradually working to improve your strength and body mechanics and the ergonomics of your activities of daily living–at home and work.

It has been given the name White Nose Syndrome (WNS), a name that almost certainly describes a symptom and not the cause. This new disease of bats has been compared to the growing Colony Collapse Disorder (CCD) in bees, also a term that describes consequences–the best we can do–because we don’t understand why it is happening.

The media compares WNS to CCD which in turn is said to be like the AIDS of bees. There is so much we do not understand. One thing is “like” another. Metaphors give us false comfort. Our problems seem more manageable boiled down to a few letters.

Bats leave their caves too early in winter. They starve to death, their fat reserves burned up too soon. As immune protections weaken, unable to preen, white spores of an opportunistic fungus dusts their noses. Investigators use thermal imagery to study infected caves. Sick bats glow an eerie green, warmed for the last time by insects eaten on the wing months earlier.

WNS is spreading in New York and Vermont where it was first discovered last year. Springtime migration promises to carry it far off to other caves where the tiny flying mammals roost hundreds per square foot.

While it is likely that human cavers (perhaps wearing boots they wore days before in caves on another continent) brought the unknown organism into the first infected caves, the bats will pass it amongst themselves. Several species are already affected, including the endangered Indiana Bat.

Is the comparison of WNS to CCD warranted? Perhaps. CCD was first named in late 2006 so we’d have something to call the complex, alarming and previously unknown condition in the Western Honey Bee. Bees fly off from the hive and never come back.

The insects and other creatures that normally descend on an unprotected colony won’t go near the abandoned hive’s store of tainted honey and wax. At least a quarter of the 2.4 million bee colonies in the United States have disappeared since the fall of 2006. And like the bees from their hives, bats fly away from their warm caves and die. What is going on?

Bee scientists can’t help us much here. There is a fungus, Nosema ceranae and a virus–IAPV– first described in Israel. Persistent new pesticides in widespread agricultural and home use are neurotoxins called neonicitinoids. They produce loss of memory and make insects stop feeding. Are bees collateral damage?

All of these stressors are “associated” with collapsed colonies–white noses, if you will–but none a smoking gun to explain the cause or halt the loss of the the world’s honeybees. Yes, the world. China, Brazil, and at least nine European nations report increasing incidence of CCD.

The so-what? We stand to lose some portion of the enormously undervalued and unappreciated work provided by bees and bats. What happens if bees no longer adequately pollinate fruit, nut and vegetable crops (for humans or wildlife)? And will it matter if bat populations don’t control night-flying, crop-eating moths and beetles or a summer evening’s disease-carrying mosquitos?

Songbirds and salamanders, now bees and bats. It is not just species at risk but orders and classes of plants and animals. Can we continue to assume their colonies can collapse and ours stay habitable?

The Charlottesville hand specialist I’d seen once before, years ago, pulled the x-rays from the envelope and clipped them crisply onto the lightboard on the treatment room wall. He made a noise half nervous chuckle, half groan.

“I’ve got good news and I’ve got bad. Let’s put it this way. We measure this kind of arthritis on a scale of 1 to 4. Four is the worst. Your right hand is maybe 3.5. The left one is a 5.” And we looked in silence for a long moment at the odd angles glaringly apparent on the x-ray, at the lack of cartilage in what used to be joint space, at the source of my lack of strength. And the pain.

“The good news is that no matter where we see the patient in this process, the interventions are still about equally as successful.” Some do well. Some, not so much.

Short term possible fix: an injection and a custom fitted brace. Long term, a surgery that uses a “redundant” tendon in the forearm for two purposes. First, to stabilize the thumb where the ligaments and joint surfaces no long hold things in the right alignment. And second, a bit of tendon is balled up in the joint space to keep bone off bone, and consequently reduce the severe pain with things as simple as buttoning a button.

Yesterday, we implemented the short term option on the left hand. The right one got a shot a few weeks ago during the Super Bowl at my MD friend’s house. I’ll be wearing the braces mostly at night. (I know this has you sitting at the very edge of your seats.)

Weirdness: my particular joint condition is 10 times more common in post-menopausal women than in men. Maybe I should just take some estrogen supplements. Ya think?

So we’ll see how this works out. Some people get more than a year of relief from injection and splinting. It’s a long way to drive up to Charlottesville for a shot. I may just wait until the next Super Bowl.

We waited for the OT next door, a drop-in appointment, and finally by noon, we walked out with two heat-molded fiberglass thumb spica splints. I’m supposed to sleep in those things. This ought to be interesting.

Bats are dying by the thousands–including the endangered Indiana Bat but several other species as well–and we don’t know why. The emerging animal disease (human risk remains to be determined) called by its most conspicuous outward symptom: White Nose Disease.

It seems unlikely the white powder on the muzzles is anything more than an ordinary opportunistic fungus (identified as Fusarium by Wikipedia, a common plant pathogen) and a sign the sickened bats are so weak that they cannot groom as normal.

What kills them is a metabolic derangement such that they use up fat reserves usually adequate for hibernation. They starve to death while hanging upside-down asleep. Future investigation may involve use of thermal cameras in suspected caves, since diseased bats will glow hotter than normal as they burn away fat stores that should have carried them through the winter.

Global warming doesn’t seem implicated. Caves involved so far are in New York and Vermont, and not farther south (so far as we know now.) But is it a bacteria? A new virus? And how is it transmitted?

This Boston.com source holds that it is almost exclusively caves visited by cavers where the disease has been found.And of course a caver one day in Argentina could the next day be wearing the same boots in a cave in Vermont. But beyond that, it must be transmissable bat to bat as they congregate as thick as 300 per square foot in some caves. And what happens in the spring when the survivors leave their caves to migrate to other caves hundreds of miles away? We’re about to find out.

Good riddance, you say? Think again. Combined with the loss of bees from Colony Collapse Disorder, this new plague among voracious insect eating bats could have additional, far reaching consequences on agriculture, public health and our increasingly precarious ecological equilibrium.

We don’t, you know.

Let’s set the arbitrary standard for natural: to eat, breathe, sleep and move in the ways our ancestors of hunter-gatherers did in 10,000 BC (which is not that many generations ago.)

There were not a lot of fatties in those days, don’t you imagine. Meals came sporadically, people moved as their food did. Diets were all local and fresh–if possible; rancid and rotten and eaten anyway if not. A missed meal–maybe even a day or a few days without eating– was the usual.

And our bodies adapted to that pattern over the millenia, crafting the hormones and nerve transmitters and hence, our ideas and habits and gut-reflexes related to food so that we would at least survive in the lean times when leftovers were eaten by the toothy carnivores.

Today, for most of us–even in burgeoning cities of the globese developing countries–there is often no shortage of highly caloric foods at hand. Food has become a varitable toxin as obesity becomes the new normal.

And this thought got me thinking: is there anything to the notion that fasting serves to “detox” our bodies of excesses or unnecessary or poisonous food-related sludge our modern bodies take in, residues that our standard, “natural” inherited metabolism we can’t effectively deal with?

We are certainly not designed by our species past to eat three heaping meals a day, plus pre-desert snacks and sugar-water drinks as we barely move our ample bodies in space.

We have a famine metabolism in a time of incredible excess of food. We are programmed to gain and not to lose because “naturally” we did without more often than we had enough. How the world has changed while our metabolism stays the same.

I’m genetically thin. But a couple of years ago, my belt shrunk. I am too cheap to buy new pants, so I set out to lose back those excess pounds.

I cut some elements of my “usual” breakfast (no more toast after cereal) and in so doing last year lost 5 pounds. dropping back to my target 175, which for my height is good. But now, I’m gaining some of that back.

But then, I’m not so interested in lunch as I once was. Can I do a “partial fast” several days a week and intentionally skip lunch altogether? And might there be benefits beyond weight loss to fasting, as so many of our sages have advised over the ages?

Consider these thoughts from a recent NPR spot on the topic:

In fasting “you re-tune the body, suppress insulin secretion, reduce the taste for sugar, so sugar becomes something you’re less fond of taking,” Neufeld says.

Mark Mattson, a scientist with the National Institute on Aging, says that when we convert food into energy, our bodies create a lot of byproducts we could do without, including free radicals.

“These free radicals will attack proteins, DNA, the nucleus of cells, the membranes of cells,” Mattson says. “They can damage all those different molecules in cells.”

Mattson thinks partial fasting has numerous benefits, from improving glucose regulation, which can protect against diabetes, to also lowering blood pressure. Some animal studies have also shown that partial fasting has very beneficial effects on the brain, protecting against Alzheimer’s, Parkinson’s and stroke.

Partial fasting may even extend lifespan because eating less sends a message to the cells of the body that they should conserve and use energy more efficiently.

Anybody have any experience with fasting beyond the calorie-reduction kind? Might this simple measure, done wisely and in addition to getting more physical activity, help us return to a better balance between diet and weight, to live more naturally?

“Humans live on one-quarter of what they eat; on the other three-quarters lives their doctor.” Egyptian pyramid inscription, 3800 B.C.

Oliver Sacks is going blind. And he’s writing a book about music. If you don’t know him, you might want to.

As a writer, Sack’s work and method is a model to aspire to. His is one of those rare scientific minds that does not dissect the life out of his subject. His soul shares in the sufferings of his patients and takes every loss as a path to knowledge. The following excerpts are from a Seed Magazine piece about him called “The Listener”.

Sacks has used the broken brain as a point of entry into the mind, so that readers learn about the perception of colors from a color-blind painter, or about the structure of memory from a man who has none. But the real lesson of Sacks’s work goes far beyond the confines of scientific knowledge. His case histories are essays in empathy, sincere attempts to enter into the experience of someone else, to know the individual and not just the disease. Sacks wants the kind of knowledge that can be known only through love, through listening.

Sacks also describes the case of Martin, who developed uncanny musical talents after contracting meningitis as a child. While the affliction impaired many aspects of Martin’s mind, it left him with a limitless auditory memory. And then there’s Mrs. C., who was besieged by musical hallucinations after becoming deaf. She couldn’t stop hearing Christmas carols.