The Best Revenge: Kill the Mites, Save the People

The goal in the fight against parasitic mites is to outlast them. This means get rid of mites without harming ourselves.

I hear from people all the time who have symptoms of parasitic mites. Miserable people, sleepless people, who are suffering without sympathy because the professionals they consult are uninformed or in denial, and the people they love are not being bitten and have no understanding of what the favorite host is going through.

A better day is surely coming, because more and more professionals are realizing that parasitic mite infestation of humans is a real problem. But in the meantime, people with mites are still in charge of their own diagnosis and treatment. And when you have not slept in months because you are being bitten all night, just about any kind of self-treatment is appealing.

But I am asking you: Please, remember you are in this for the long haul. This is not just about getting a few hours of sleep at any cost, although it may feel like that today. This is about killing the mites and keeping you alive. So please take care of yourself. Start with the safest possible methods and give them a chance.

You can do all these things with little or no risk:
Get rid of the carpeting in your house and your car
Clean your floors with ammonia in water
Run air conditioners and dehumidifiers in your home
Go minimalist: Throw out all the stuff you don’t absolutely need
Drop a cup of borax and a cup of ammonia in every load of wash
Swim as often as you can in a chlorinated pool

Please see the protocols on this site for more approaches to ending the co-infestation of skin and environment.

Too often I hear from people who are drinking things no human should ingest, or putting things on their skin that are toxic. You won’t see those letters published on my site because I cannot in any way endorse those methods. I do understand when you write such a letter that you are hurting and nobody helps you or even believes you. And so you have become your own scientist and your own guinea pig. I have been there and I understand the motivation. But let me tell you, when you are over this you will wish you had never exposed yourself to toxins or to carcinogens. You will want to live a happy mite-free life in the years ahead.

And it is possible to get there while making your own health your top priority.

The best revenge is living well. And to get your revenge on parasitic mites, you must keep yourself alive.

Take good care.

A Call to Self-Advocacy for People with Parasitic Mites

I hear from more and more people about their struggles with parasitic mites. So many lost homes, ruined marriages, derailed careers, decimated savings accounts. So many children suffering, so many pets being put down. Hopefully the reason I hear from so many is that more folks are finding my book, this site, and my Facebook page — and NOT that more people are contracting mite infestations. But with the climate warming (which favors arthropods), and with the continued popularity of backyard poultry, it is possible the number of affected people is increasing. As long as the problem officially does not exist and is not tracked, it will be difficult to know for sure.

What is clear is that there are enough of us, with enough smarts and enough indignation, to begin to breach the official denial that has prevented people with mites from getting help for so many years. Networks are forming. There are petitions signed by thousands, there are groups sharing ideas on Facebook. In Europe, Dr. Olivier Sparagano has begun a professional organization to fight the red poultry mite, that will surely benefit humans as well as agricultural animals. Dr. David George has published his groundbreaking article in the journal Parasites & Vectors on the need to consider parasitic mites as a human and veterinary diagnosis. Nat Willingham, who runs a group on Facebook, is working to form a patient organization.

If you are a person with mites, and if you have any energy left after working the grueling protocols you’ll find on this site and elsewhere, here are some things you can do:

Join Nat Willingham’s Skin Mites Support Group on Facebook and volunteer to help with her new organization and its website

Get involved with your local Biohacking or Citizen Science group, and learn to identify your own parasitic mite species

Start educating the people around you about how to avoid a parasitic mite infestation, because an ounce of prevention really is worth a pound of cure. And it can be as simple as suggesting your friends refuse to bring a bird’s nest or feathers info their homes

When someone disputes the reality of your infestation, be prepared. Refer them to David George’s article, or to the “Frequently Asked Questions for Friends and Family” section of The Year of the Mite. It is time we all came out of the closet.

Meanwhile look for a questionnaire soon on this site. Gathering information systematically about the shared natural history of infestation will help us approach NIH and the CDC with a scientifically based appeal for assistance.

When I think about people who had to deal with parasitic mites before the internet, with no information and no support, it fills me with sorrow. It is hard enough to overcome this scourge with the support and information we have now. But we have come a long way from those isolated days. And together we will overcome the institutional denial that adds to the health issues of too many people with parasitic mites.

With all best wishes to you and yours,
Jane

The Mite Fight: Breaking a Negative Cycle

It has been more than fifty years since human erythrocytes were first identified in the gut of a Dermanyssus gallinae (red poultry mite) in a New York City apartment.  The journal article that disclosed this finding is interesting not only for its scientific content but also for what it tells us about the history of scientific attitudes about mites as human parasites.  The abstract of the article states, in part:

“Although a marked clinical dermatitis is common in some individuals that become closely associated with the bird mite, Dermanyssus gallinae, the literature presents little evidence that this mite will ingest human blood and many investigators feel that this species will never ingest it.”

The unfortunate reality is that, half a century later, persons with parasitic mites still encounter helping professionals who emphatically dismiss this public health issue.

While skepticism is an important part of the scientific method, the refusal to entertain the possibility of this health problem is profoundly unscientific.  When scientists maintain that parasitic mite infestation of humans is “impossible,” they fail to ask the questions and perform the studies that could demonstrate the reality of this problem.  For example, recent studies of non-parasitic Demodex face mites using polymerase chain reaction have increased the estimated infestation rate from about 8% of humans to 100% of humans.  This is academically interesting, but the improved methods are still not used for persons who experience parasitic mite infestation.  If in fact there is more than a 90% false positive rate using the old methods, then by far the majority of people with these mites are not receiving the care they need.

Lacking valid collection methods, the numbers of persons with parasitic mites remain unknown and are likely underestimated.  This in turn leads to underfunding research into diagnosis and treatment.

Reliance on poor diagnostic methods for parasitic mites also leads to false diagnoses of delusional parasitosis.  An article in Clinical Microbiological Review states that delusional parasitosis “is characterized by the fixed belief of being infested with pathogens against all medical evidence.”  If, however, the “medical evidence” is based on testing with a very high false negative rate, then the psychological diagnosis is a house built on quicksand.

For persons with parasitic mites, the mite fight is not just against the arthropods that bite them.  Affected individuals must also grapple with helping professionals who, despite best intentions, often do more harm than good.

Fifty years ago, when that journal article about human blood cells in mite guts was published, each person with parasitic mites faced those unfortunate attitudes alone.  With no community of fellow survivors, the experience must have been incredibly isolating.

Fortunately, times are changing.  There is an online community of people facing the challenge of eliminating a parasitic mite infestation.  There are moves in the direction of a patient advocacy organization, a much-needed step.  In the absence of necessary research, people with parasitic mites are sharing what works for them (as in the protocols on this website and in the book version of The Year of the Mite).  And just as importantly, there are professionals in several fields who take this public health issue seriously.  That means the potential for more organized research along with increased credibility for those who have parasitic mites.

There is an online meme that advises:  Don’t cling to a mistake just because you spent a lot of time making it.  A lot of time has passed since that 1958 article.  It is time to open minds, to use the scientific method to study this problem.  Too many have suffered too much for too many years.

 

 

 

 

 

 

Host Expansion in Mites.

Paradigm Shifts are Hard to Do: Host Expansion in Mites.

The process of publishing The Year of the Mite has been fascinating.

Year of the Mite Book Cover

This story is based on a year in the life of an American family.

The support from our community is terrific.  And in that community I include not only folks who have (or have had) parasitic mites, but also the many professionals whose mite paradigm has already shifted. And make no mistake: a shift is happening.  It started in 1958, when entomologists published an article about isolation of human blood cells in the guts of chicken mites in a New York City apartment.  For those who read it, that professional journal article moved the conversation from “chicken mites don’t bite people,” to “chicken mites can’t reproduce while feeding on human blood.” At last, host expansion in mites starts to be recognized.

The ground shifted again with the 2015 publication of the David Green article in Parasite and Vector regarding the ability of what we call “chicken mites” to change host species.  These mites are quite adaptable to new host species — a process called “host expansion.”  A whole group of entomologists published those findings.  Those of us who have had parasitic mites quite agree.

Like many paradigm shifts, this one is happening slowly, and it is not happening evenly across the board.  While obtaining permission for the quotes in The Year of the Mite, I encountered one author who refused to grant permission to use an informative quotation from an agricultural bulletin.  This scientist told me he frequently heard from people who claim to have mites, and that what I alleged about mite behavior on humans was impossible.

I found that attitude troubling in two respects.  First, I doubt that a word like “impossible” furthers the scientific goal of exploring the universe with an open mind.  At its best, science offers a terrific opportunity to ask questions and learn more about existence, with no agenda, no ax to grind.

Second, as a mite survivor, I am concerned when I  encounter professionals who deny the possibility that the evidence of my senses, along with parasitic mites collected in the environment, reflected an objective phenomenon.  I am especially concerned for the health and safety of people who still have mites.  And I know that folks with parasitic mites are out there – many write to me at this site, and on my Facebook page.

On the other hand, science runs on data, and data about parasitic mite infestation is tough to come by.  Mites are rapidly moving organisms, many translucent, and many the size of the point of a pin.  The good news is, this lack of data may be ripe for change.  Researchers who study face mites have developed a new way to collect mite DNA from the faces of people with these scavenger mites, and then sequence the mite DNA to distinguish it from host DNA.  Using these methods, scientists have raised the estimate of people with face mites from a small minority to almost 100% of humans.

This same method could be used to collect parasitic mites.  Collection of Dermanyssus gallinae from the skin of people with parasitic mites would shift the conversation yet again, to make it clear what species of mites inhabit a human host.

Paradigm shifts are hard to do.  But the good news is that in science, data eventually wins.  For the sake of people with parasitic mites, the next phase in this shift can’t happen soon enough.

 

Envy – An Excerpt from the Book – The Year of the Mite

It was dusk, just when the bugs woke up to bite. While awaiting a load of laundry at a laundromat, I sat on a wooden bench on the sidewalk facing a restaurant. I was dressed in thin clothes that were easy to wash, and I was cold. It was a chilly night, and I was a homeless person with a six-figure income.

As I sat on the bench, a man and a woman in their forties approached the restaurant. He was trim, looked like he worked out. He had dark hair and a pencil moustache.

She was slender too, had light brown hair, wispy and almost blonde. She was wearing a baby blue sweater, had it wrapped tightly and her arms crossed.

When they arrived at the restaurant, the man reached across and opened the door for her. They passed through, into a warm evening of good food and later, maybe sex, and almost certainly a cozy sleep. And here is the thing: the expressions on their faces as they walked through the door. They were so blasé, almost bored, as if maybe they were both trying really hard to play it cool. That is what I’d like to think: that they were finally on a date with each other, really did appreciate what they had, could not wait to be together, and were wearing their game faces because they were both playing hard to get.

But in the moment I saw their faces, while I sat there cold because warm jackets are too hard to wash every night, while I had no appetite and things bit me and crawled on me, I believed these two people were just as uninterested as they looked. And I had a flash of complete hatred for this couple I never met. I hated them more intensely than I hated my screaming alcoholic eleventh grade chemistry teacher. I hated them more than I ever hated anybody, and these were people I never talked with, people who had done me no wrong. I hated them because I envied their ability to take it all for granted. I hated them because they were innocent of what it was to be haunted. I hated them because their skin was unmarked, and nobody was in their hair or their ears or their belly buttons. I hated them because I wanted that. I wanted to be just that privileged. I wanted to not even notice how good I had it, and I did not know if I would ever feel nonchalant again.

It was a flash, one second, then the door closed and I never saw them again. I don’t know whether they noticed what they ate, or if they spoke at dinner or just sat, glazed over. For all I know they were run over by a bus that night.

I am not even sure now which laundromat I sat near, what restaurant it was. If I saw that couple again I would not know them. But I will never forget those blank expressions, those bland eyes, the man smug and entitled, the woman serene and self-contained.

And I wonder if, in that moment when I hated them, I was alive in a way that they were not. It is tempting to believe that awareness is the prize and contentment the booby prize. But really, of course, it’s the other way around.

“Housebakers” — An Excerpt from the book, The Year of the Mite

Kenny from Housebakers called me. “We cooked the house for ten hours, just to be sure,” he said.  They were packing up.  It was time to go home.

When I got home from work, Monica was making dinner. She had the fan part of the heating system running to cool off the house — the fan that blew air through the untreated heating ducts.

The house was hot.  So hot that you walked through neighborhoods of heat, touched furniture and it throbbed against your hand, stepped on the Spanish tile that was usually cool and it almost burned your heels.

The pumpkin left on the table from Halloween was melted on top.  The computer wireless was knocked out.  The glycerin soap by the bathroom sink looked like it always did, but when you reached for it, your fingers went right through.  The milk had soured in the refrigerator. But there were prickly sensations, almost bites or maybe bites.  Monica feared she was being bitten, hoped that her skin was just hyperreactive from all the scrubbing to get the bugs out of our pores.

They had brought the house to 60 degrees Centigrade, and pumped in hot air, hour after hour.  The ceiling paneling warped, a plastic cup left a red melted ring on a counter, the bananas turned solid black, and the bugs were still biting.

I lay down briefly on the bed. The surface had cooled but I could sense the hot core like the middle of the earth. When I rested the side of my face on the pillow, they climbed into my ear.  It was like I was a book they had been reading, and they remembered just where they left off.

“I can’t get out plates for dinner,” said Sophie, “they’re too hot.”

It was hot enough to wake the dead, like the poem about the gold miner Sam McGee in the Alaskan crematorium:

Since I left Plumtree, down in Tennessee, it’s the first time I’ve been warm.

Every bug in the house woke up and said thanks.

It was time to run away.

Press Release for “Year of the Mite” — the Book

The Year of the Mite is now scheduled for publication in early 2016.

To see the press release, please click on this link:

http://www.prweb.com/releases/2014/11/prweb12292789.htm

“This book gives all the advice contained on Jane’s blog, and much more. Finding out that my feelings of fear, confusion and desperation had been shared by someone else going through the same thing really helped.

The fact that Jane is a scientist offers a further dimension; the pest control operators and doctors I encountered during my nightmare experience could learn a lot from reading this.”

— Kitty W., United Kingdom