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A Decade After The Year of the Mite

Posted on by Jane

This year marks a decade since my Year of the Mite. Although it certainly did not seem like it in 2009, I was one of the lucky ones: My infestation with Dermanyssus gallinae only lasted a year. Only a year of being bitten by things I could not see, up to three times a minute at the height of the infestation. Only a year of trying everything I could think of to reclaim my own skin. Many people with parasitic mites have suffered far longer, and many continue to suffer.

I am glad that the book brings solace to people dealing with parasitic mites, and helps them to feel less alone. Although I am neither a physician nor an entomologist, and anyone who uses my protocols does so at their own risk with no guarantees, I am glad that some people have found ideas that helped them. My methods were completely unscientific; out of desperation, I tried multiple remedies at a time, so looking back it is not possible to say exactly how effective any one treatment was.

While some people have reached out to me for advice, I only know what worked for me at the time, with the particular mites I had. All I can offer is anecdotal, and all of that is captured in the book.

While a few folks have found it helpful to show the book to an open-minded physician, The Year of the Mite did not turn the tide in any meaningful way regarding the opinions of professionals in the field. That will require a different approach than a scientific memoir. It will require challenging professionals to approach this problem scientifically, with open minds. How do they know what they think they know, and what it would take to find out more? I have ideas about how to begin that process, but that work will not be under the pseudonym I used for this book.

After ten years I still have the same piece of advice that I offered when I had mites: Own the problem. While there are some scientific advocates for people with parasitic mites, such as Dr. Olivier Sparagano in the UK, such professionals are currently rare. And so it is essential to learn everything you can about this condition. The more you learn about mites, how they behave, what conditions support and do not support their growth, the better able you will be to manage your own recovery. Until attitudes change, until there is more research, people with mites must be their own best advocates. Wishing all the best to everyone affected by this condition.

How Researchers Find Symbiotic Mite DNA on our Faces

Posted on by Jane

This is a passage from The Year of the Mite that describes a presentation I attended in March 2015 by entomologist Michelle Trautwein called “Meet Your Face Mites: A Story of Discovery, Evolution, and Intrigue.” To learn more about the work of Michelle and her colleagues, just Google “Mites Having Sex on My Face” and check out the video.

Michelle focused on two species from the genus Demodex that show up in our faces: D. brevis and D. folliculorum. They live in hair follicles and eat sebum, small quantities of face goop. So they are scavenger mites, and not true parasites. Unlike my gallinae, they don’t need to bite to eat. So they don’t hurt.

Michelle described the old methods for collecting face mites: tape and a microscope. Not that effective. Pretty much how we try to collect D. gallinae. Using those methods, somewhere between three and ten percent of humans appeared to have face mites.

Then she described the methods she and her fellow face mite researchers developed: They collected material from the faces of willing subjects using slides covered with something like super glue. They used Polymerase Chain Reaction to sequence the DNA from people’s faces. Then they isolated and identified the DNA that is particular to the two Demodex species. And more: they broke it down to which subspecies of face mites have been passed down from mother to child for centuries in different parts of the world. These scientists can tell where your ancestors came from by the genetic sequences of the mites that live in your face. And using these advanced detection methods, they found that 100% of human beings have mites living in our faces.

One hundred percent. This means you.

Pretty fascinating stuff.

Courtesy of Michelle, I now have a whole different answer to the question, “Why are mites so hard to find?”

Answer: The old methods don’t work very well. You need to sequence the DNA on your skin and look for DNA that is unique to mites. You’ll find the DNA of scavenger face mites, for sure. And if you are infested with parasitic chicken mites, you’ll find that DNA too. And if your doctor isn’t using super glue and PCR to check you for mite DNA, they just don’t know what is going on.

So now it’s my turn to ask a question: If it’s worth sequencing the DNA of scavenger face mites, purely for scientific interest, isn’t it worth collecting and sequencing parasitic mite DNA from people who have been suffering for years? Wouldn’t it be good to know for sure what is happening, so we could help these people? If you are a physician or a therapist with a patient who is being bitten by something they cannot see, this question is for you.

The Best Revenge: Kill the Mites, Save the People

Posted on by Jane

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.

The Shifting Ethics of Mite Fighting

Posted on by Jane

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

Posted on by Jane

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

Posted on by Jane

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.”

Posted on by Jane

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

Posted on by Jane

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. There are groups on Facebook where affected people share information about the protocols that work for them.

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 the Skin Mites Support Group on Facebook and volunteer to help

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.

We can also start gathering information systematically about the shared natural history of infestation.  This 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

Posted on by Jane

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.