The Shifting Ethics of Mite Fighting

People with parasitic mites all need help in some form or other, and it is difficult to get help without putting others at risk. You escape to a hotel for a night: how do you know your sheets will be thoroughly washed? You throw something out: how do you know no one else will scavenge and use it? You sell your house: even if you disclose, how do you know how the buyers will be affected?

I am convinced we are living at the end of the dark age of mite infestation. Already there are researchers using direct DNA detection on non-parasitic face mites like Demodex folluculorum, who have found ten times the incidence previously believed. Other entomologists are starting to write about the medical impact of parasitic mites like Dermanyssus gallinae. It’s only a matter of time until the two research streams come together and we get to a parasitic mite DNA detection kit for use on humans.

At the same time, other biologists are using the DNA fish leave behind as they swim in rivers (called eDNA, for environmental DNA) to tell which species have swum by. It turns out every organism leaves trace nucleic acids in the environment as it passes. Once that technique is applied to locating parasitic mites in the home, the era of relying on ineffective glue traps will be over.

These developments will be wonderful in several ways. They will end the scourge of misdiagnosis with delusional parasitosis, which has been fueled by lack of real data. Accurate medical and environmental measurements of parasitic mite infestations will enable people with mites to advocate for more research funding, and to take better advantage of the limited treatments that currently exist.

But on the flip side, it may be tough to persuade others to help when the risks are well defined. The therapist who thought you were imagining things may suddenly start worrying you will infest the upholstery in her office. The contractor who comes to haul away your carpeting may turn down the work.

It is incredibly frustrating not to be believed. Real data will usher in a new era. But in the first stages, when the reality of parasitic mites is better understood and before there are better treatments, people with mites will not be able to hide behind the ignorance of others. It will be a far better problem than the ones they face today.

An Open Letter to Eric Boodman at Stat

Hello Eric,

I’ve just read your article on entomologist Gale Ridge:

After reading it, I encourage you to broaden the scope of your research into the subject of mites as human parasites. While I am sure Dr. Ridge has the best of motives, her methods are outmoded and she may be misdiagnosing people with parasitic mites as having delusional parasitosis.

It’s been documented since the 1950s that the “poultry” mite Dermanyssus gallinae ingests human erythrocytes:

And in recent years, researchers looking at (non-parasitic) face mites have determined that looking for mites on humans with a microscope – as Dr. Ridge does – yields about a 90% false negative rate:

A false diagnosis of delusional parasitosis can have very detrimental effects on people. A group of entomologists in Europe, under the leadership of mite expert Olivier Sparagano, has formed an organization called COREMI that is looking at this issue. Here’s an article from some of them:

More research is happening in this field, and there is hope for people with parasitic mites that they will be able to battle the twin scourges of parasitic mites and misdiagnosis. This kind of misdiagnosis is endemic, to the point where there’s a name for an actual bug infestation “masquerading” as delusional parasistosis:

Why they call it “Pseudo-delusory,” when the woman just had bugs, is anyone’s guess.

Positive change is happening. In order for change to continue to happen, it is important for entomologists to apply modern methods to parasitic mite detection. It is time for this harmful paradigm to change.

Best regards,
Jane Ishka
www.yearofthemite.com

Training Course on Human Impacts of Parasitic Mites

Fifty years after human blood cells were isolated in the guts of “chicken” mites, it can still be difficult to find good help with an infestation. But change is happening, even if it is slow change. Take a look at the invitation below, designed to raise awareness of this health hazard among professionals. Maybe you know a dermatologist or a veterinarian who would like to go to Greece this summer? Share this please. It may help more than you know.
Cordially,
Jane

From: Julia Stew [mailto:[email protected]]
Sent: 06 March 2017 14:56
Subject: Coremi – One Health Training school – Greece July 2017

Dear colleague,

I would like to draw your attention to the One Health Training school on the poultry red mite Dermanyssus gallinae this summer in Greece (31 July – 3 august 2017) entitled:

One health:
Potential risks for human health associated with Dermanyssus gallinae and
dissemination strategies to communicate recommendations to professionals

Could you disseminate the invitation and application form? Trainees should apply before March 31th.

The topics during this training school are:
– Characteristics of the poultry red mite (PRM) and related parasites
– Pathological manifestations in humans associated with exposure to PRM and its control measures – Differential diagnosis-PRM diagnostics
– Treatment of PRM-affected individuals
– Dissemination strategies to increase the awareness of professionals on human health risks & regulatory affairs connected to PRM

The target groups are:
Academic, industrial and health services investigators in
▪ veterinary medicine (any field related to D. gallinae)
▪ medicine (dermatologists, allergists, pulmonologists, internal medicine, etc)
▪ biomedical and life sciences (any field related to D. gallinae investigation, disease
diagnosis & translational research)
from countries participating in the COST Action FA1404

OVERVIEW
TYPE: 4 days, problem‐based course
DATES: Monday 31 July 2017 – Thursday 3 August 2017
TIME SCHEDULE: 1st day 19.00‐21.00; 2nd‐4th day 08.30‐19.00 with breaks
VENUE: Nafsika Palace, 6 Heroon Str, 33200 Itea Phokis, Greece, http://www.nafsikapalace.gr/
HOST INSTITUTION: Department of Pharmacology, Medical School, National and Kapodistrian University of Athens (NKUA), Greece

Julia Stew
Grant Holder Manager
COST Action: COREMI FA1404

Coventry University
CAWR – Centre of Agroecology, Water and Reslilience
Research Office
Portal House
163, New Union Street, Coventry, CV1 2NT

Tel: 07974 98 4299
Email:[email protected]

Do Yourself a Favor: Search “Parasitic Mites PCR.”

As a matter of principle, I don’t accept ads on this site or suggest specific products.
But in a continuing effort to move parasitic mite diagnosis from the stone age into the 21st century, I am going to suggest you search “Parasitic Mites PCR” and read up on the growing body of research in this field. And even though I’ve not yet talked with these folks, here is an intriguing website that offers molecular testing for parasitic mites on non-human animals.
http://www.zoologix.com/avian/Datasheets/Mites.html
We are getting so close, folks…
Let’s work together to make this happen.

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

Biohacking Parasitic Mites: Self Diagnosis by Open Source PCR

When scientists and physicians assume parasitic mites cannot infest people, the result is little or no research that would lead them to understand otherwise. One way to end this Catch-22 is through biohacking parasitic mites, which is to say, becoming our own diagnosticians.

Formal research conducted on scavenger face mites such as Demodex folliculorum has shown that detection of mite DNA using Polymerase Chain Reaction (PCR) is a much better diagnostic tool than traditional, mostly futile efforts to capture mites themselves.

Yet to my knowledge, no formal scientific studies are being conducted to capture parasitic mite DNA on infested humans.

The Citizen Science movement (also known as Biohacking) exists in part to address gaps in research that would benefit particular patient groups. The more that persons with mites can take charge of their own diagnosis, the sooner they will have evidence to illustrate that parasitic mite infestation is a problem that requires further research and medical support.

Below is a link to purchase open source PCR equipment.

http://download.openpcr.org/build/OpenPCR-BuildInstructions-1.2.pdf

Making the most of this opportunity will require open source sequences for DNA of various mite species. More to come on this topic. Stay tuned.

And in the meantime, let’s encourage entomologists and other scientists to conduct formal investigations as well.

On Being “Septic Smart” and Mite Savvy

I just bought a house in septic country. We are talking about a warm-weather state with big humidity. Won’t move there for a couple years, so I have time to figure this out.

It wasn’t until I read up on septic systems, when the house was already a done deal, that I realized everybody with mites in the hinterland has been trying to fight the bastards without benefit of bleach or ammonia.

Because it says all over the “Septic Smart” literature that you can’t use either of those anti-mite staples if you have a septic system.

Oh how ignorant I was. I thought a septic system was just a tank that got pumped when it filled up.
Now I know it is a backyard sewage treatment plant with its own little ecosystem, that can be disrupted rather easily. It’s like a piece of scenery in a play turned out to be a character.

Good news is, the house is pretty much wood floors and window blinds. If it were all carpet and drapes, it would have held no appeal. Years after the infestation, my esthetic is still about arthropods.

It is clear that I’ll need to beef up my essential oils game. An ounce of prevention is worth a pound of cure. Septic smart, meet mite savvy.

Progress Happens.

A small press run by science nerds recently published my book, The Year of the Mite, which is based on my family’s zoonotic infestation by the poultry mite Dermanyssus gallinae.  These are nocturnal parasites about the size of the point of a pin that tend to pick out one favorite in a flock (or family), and in sufficient numbers can bleed a chicken dry.

I am a cell biologist with no particular training in arthropods, and was tossed into the Looking Glass world of mite sufferers when my then-partner decided to raise a new batch of baby chicks in our family room in 2009.  It has been sixty years since the first published account of human erythrocytes isolated in the guts of poultry mites, but even now, people with parasitic mites are often told their problem is psychological.  The Catch-22 is that, as long as this view prevails, there is little or no focus on diagnosing and treating the problem.  I was lucky that a veterinarian captured and identified specimens, and that as a biologist, I was able to piece together an effective protocol based on journal articles from around the globe.

The paradigm is beginning to shift, as the number of people with parasitic mites increases due to climate change and backyard poultry.  The use of PCR to identify mite DNA on humans is far superior to the old tape method, with its very high false negative rate.  UK mite expert Olivier Sparagano is organizing European professionals (including entomologists and veterinarians) who recognize this public health issue and want to combat it.  A group of entomologists headed by David George recently published an article on the medical and veterinary impacts of Dermanyssus gallinae (see link below).

https://parasitesandvectors.biomedcentral.com/articles/10.1186/s13071-015-0768-7

Meanwhile some US mite survivors are organizing a patient advocacy group with plans to publish articles on various aspects of the issue.

While I am grateful to have rid myself of parasitic mites, there are many who continue to suffer with this unrecognized public health problem.  Many of them are sleepless for months on end, in some cases becoming suicidal.

Progress is happening, and cannot happen soon enough.

False Diagnosis of Delusional Parasitosis

Below is a link to an article comparing false negative rates using various methods of testing for mites. I believe the PCR method was first used in studies of Demodex and showed much higher rates than with old methods. The interesting thing is, if you read articles in the psychotherapy literature about delusional parasitosis, the authors uniformly assume the validity of old methods like tape testing. So the false negatives with tape testing turn into false positives for delusional parasitosis. Coming soon: a full article on the etiology and sequelae of false diagnoses of delusional parasitosis.

http://www.ncbi.nlm.nih.gov/pubmed/24411782