SAXTONS RIVER — When I slid into the driver's seat of my sparklingly clean rented Ford Focus in Fort Myers en route to a vacation in Naples, Fla., I little suspected where I was really going.
It was early May, and I had decided to escape the fickle weather of Vermont's early spring and spend nine days lolling in a sunny climate, where I would wear shorts and a halter top when not in a bathing suit, eat simple meals prepared in my motel room, swim in its underutilized pool, and return home restored to equanimity.
Instead, I returned with a case of scabies, a subcutaneous infestation by a microscopic mite. It didn't manifest for several weeks but was very likely passed on to me by the contact of my bare skin with the fuzzy seat back of the car I drove.
* * *
When the first red bumps appeared, I thought I was suffering from mosquito bites, but it wasn't long before their persistence and ominous development into raised fluid-filled nodules negated that hypothesis.
When nocturnal itching began to torment me as well, I visited a seasoned physician's assistant at the local walk-in clinic, who was baffled.
The nature of the symptoms ruled out shingles and scabies, he said. After asking me whether I had allergies, bed bugs, or a recent travel experience (my having returned more than two weeks previously from Florida discounted that as a possible cause), he prescribed an oral steroid, Prednisone, for the rash and Benadryl for the itching, advising me to return if the problem persisted.
Relieved that I had nothing serious - shingles is a possibility for a woman in her 70s - I enjoyed the temporary relief the treatment provided, until a week after the last steroid ingestion, when a new wave of bumps emerged.
Though never having had any food allergies, in the absence of a diagnosis, I considered whether a change in eating habits might have precipitated an allergic reaction.
Because I had been gone for 10 days, I had been very busy and had little patience with food preparation and had instead been nibbling extensively on peanuts. Sure enough, an online search informed me that peanut allergies can take the form of hives, which might have described what I had.
That hypothesis seemed to hold water. Once I forswore peanuts, the rash seemed only sporadic. I was treating it with anti-itch creams and anything I could imagine, including dog shampoos and wound cleaners. Thinking that something I was still eating might have been produced in a factory that processed peanuts, I carefully scanned labels.
* * *
It was the sight of identical looking bumps on the legs and butt of my 1{1/2}-year-old grandson that set off alarm bells. Warm weather prevailing, I had often taken his naked body onto my rashy lap, its skin exposed by my shorts, and now I saw that whatever I had had been passed on to him! Concerned that I might have a parasite, I called my dermatological physician's assistant daughter-in-law.
I described my symptoms, emphasizing the itchiness and contagion factor. After some deliberation, even without photos, she thought it likely I had an atypical case of scabies. She urged me to go to a dermatologist, who, she thought, would deem the likelihood of contagion grounds for an emergency visit.
But dermatologists proved to be rare in southeastern Vermont, and were not easily mobilized by the word “scabies.”
The best my daughter Dora and I could arrange was a same-day appointment with her family-care doctor, whom she had seen only twice before.
Dr. Warren (not her real name) did not hesitate to diagnose scabies and prescribed a total skin application of 5 percent permethrin for all household members, all of whom had symptoms by then, to be repeated in a week. Optimistic about the outcome, we put the whole family on synchronized permethrin and awaited the promised cure.
It didn't work.
Though the rash cleared up for a day or two, it soon returned as vigorously as before. A call to Dr. Warren's office merited a dismissive statement that we were reinfecting and a recommendation that we visit a dermatologist.
As we had taken what we thought were sufficient hygienic precautions against reinfection - washing all bedding, towels and clothing in hot water and using a hot dryer - we were inclined to think that the treatment itself had been ineffective, resistance having developed in time.
Nonetheless, we intensified our disinfecting campaign to paranoid levels. We disinfected anything any family member might have touched, even though none of us had a rash on our hands.
Simultaneously, we entered on intensive internet research for further medical information and scanned anecdotal accounts from people who'd continued to struggle with scabies after taking regulation doses of permethrin.
The medical picture was fuzzy, with some sources claiming that contagion was unlikely except through skin-to-skin contact, even rating scabies as a sexually transmitted disease. None acknowledged that a cure through permethrin was uncertain.
Dora spent hours every evening trying to glean knowledge of workable procedures.
Personal accounts were sometimes enlightening. Stronger-than-recommended applications of sulfur, in a homemade salve, had been used successfully where permethrin had failed, as had specialized hygienic measures, such as placing all mattresses in a disinfectable plastic cover, according to some accounts.
But whatever post-permethrin means were employed, the tone was always desperate and persistence essential to reported successes. A dreadful anecdote circulating about a man who was stricken for 11 years reinforced this necessity.
That an extended family would be harder to treat than a single person household was obvious. To prevent potential reinfection, we abandoned use of our living room, removed carpets, avoided or disinfected objects like telephones, sterilized toilet seats or got into outdoor habits, maintained assigned seats at the table, and sprayed car interiors (especially seats, baby car seats, and seat belts) after each use.
We consumed gallons of rubbing alcohol and a lesser quantity of bleach in the process. We also applied alcohol and sulfur salve to the sites, while never touching each other. As I had recurring lesions on my thighs and buttocks, I always sat on ample newspaper that I burned immediately afterwards.
As the scabies mite is generally held to be viable for no more than three days absent a host, we retired hard-to-clean items like blankets or spare sheets we used on seats.
And having some leftover permethrin, we also applied a synchronous third treatment, to no avail.
* * *
When weeks passed with only short-lived improvements, I accepted my daughter-in-law's recommendation that I find a dermatologist who would prescribe oral ivermectin, familiar to me as a farm-animal dewormer. According to my farmer daughter, the medication had bizarre side effects, which relegated it to a last-ditch treatment.
Scabies can only be diagnosed circumstantially unless a skin sample of a blister under a microscope reveals mites, which are rarely numerous. The rash is an allergic reaction to the mites' detritus.
My practitioner, finding none, accepted my circumstantial presentation and prescribed two doses of ivermectin, taken a week apart, which I took with tolerable side effects but with only partial success.
All the while, I ramped up our disinfecting protocol, rotating pillows nightly, and applying alcohol - sometimes to our whole bodies, even at the cost of skin integrity.
Desperate by now, and considering that even ivermectin might have outlived its effectiveness, all five of us would have been willing to endure further mutilations if they had been proven effective.
Dora and I also consumed raw garlic from our own garden just for good measure, and we engaged in not-always-friendly debates about whether the mite could walk across a floor or other surface. Online statements were often unsubstantiated, and such claim as that mites can crawl an inch in eight minutes - or was it eight inches in one! - fed our confusion.
* * *
When on my second visit the dermatology physician's assistant pronounced that there was nothing further he could do for me, I felt betrayed. The scabies lesions were still present, though there were fewer of them.
It was too easy to hide behind the mantra of non-compliance, I thought, to claim reinfection without even having been issued directives on how to avoid that - most likely because of professional ignorance!
Nonetheless, before dismissing me as a hopeless delinquent, he made a biopsy of a recent lesion and scheduled a third visit a week later, to discuss the results, which proved to be vague (neurological dermatitis, translating as “an itch,” as I understood it).
“Thanks a lot,” I thought, hoping it didn't cost my insurers too outrageously, as my previous visits had.
By that time, my lesions were very minor and seemed enfeebled, so I asked the critical question: how would I know when I was contagion free, so that I could resume normal social intercourse?
With some equivocation, the youthful practitioner pronounced me non-contagious, cautioning against reinfection. I think he was convinced that Dora's family, who would not take ivermectin because she was a nursing mother, was a hotbed of contagion.
As our online research made it clear that both itching and some rashiness can persist for weeks after mites are gone, I took his statement as policy, deciding to wait a week just to be sure.
Within days, I was lesion- and itch-free and rejoiced.
But because my grandchildren, especially the youngest, still had symptoms, albeit reduced, we maintained a policy of no at-home visits, either at our house or that of their playmates, and avoided touching one another.
* * *
Though the saga might have ended there, a sorry epilogue ensued.
Little by little, we learned that families whose children had played with ours pre-diagnosis were showing symptoms that proved contagious, as had a worker my son-in-law employed.
Equally devastating was the news that in every case, except for that of one friend who saw Dr. Warren, their primary-care doctors had pronounced that they did not have scabies!
Dora thereupon became a crusader, urging all to request their doctors to prescribe permethrin and to initiate daily disinfecting washings of whatever objects had come into skin contact, especially clothing and bedding.
The reactions were mixed. Some sufferers remained in denial, attributing what we saw as contagion to its being a bad mosquito year, while others panicked.
Dora spent precious hours after the children were asleep describing over the phone our family's experience and bemoaning the prevailing medical ignorance.
As I write this, my grandchildren are almost scabies-free, but we live with a fear of reinfection from those who are failing to take appropriate precautions. We also bear the heavy responsibility for having initiated a chain of infection, albeit unknowingly.
Scabies is not fatal and, while producing sometimes-intolerable discomfort, it doesn't create systemic illness. It does not cause fever, debilitation (except from not sleeping), or other symptoms of sickness.
But in this country we cling to the myth that we have the best medical system in the world - even when family practitioners are ignorant of information readily available online (such as the longer incubation period of first-time scabies sufferers and the varied forms the outbreaks take), when we pay either out of pocket or through our taxes medical fees that are exponentially greater than those in the rest of the developed world, when our medication costs represent an unconscionable windfall to the pharmaceutical industry, and when our practitioners frequently prescribe drugs of little effectiveness.
It is a travesty on the intellectual plane, and a tragedy on the emotional.
My family, while employing myriad measures with a compulsiveness previously unimaginable, was beset by anxiety and depression for months, harboring a fear that we might never purge the disease from our home, that we might never again have visits with other family members or friends, or that our children might be unable to go to school or have playdates.
Once on the mend, I mailed a tactful letter to the practitioner who first assured me I did not have scabies, intended not to lay blame but to educate. Our friends have been too busy dealing with treatment protocols to do the same.
But someone had better face the concomitant illnesses that remain embedded in our medical system, as a first step toward healing it!