A Decade After The Year of the Mite

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.

What Readers are Saying about “The Year of the Mite”

Below are some recent reviews. And as I post this, Amazon seems to be offering the eBook free!

And, by the way, if you have read the book, please post a review… the more reviews, the more likely the Amazon genii is to offer the book to folks searching for information about mites. Thanks!

“Jane certainly has a gift for writing, her story is both captivating and fascinating but she also provides valuable knowledge on what she did to rid herself and her family of the problem. I laughed and was angry with her as I read her story and I’m sure others that have been through this can relate. The few friends that believe be me know I’m suffering but they’ll never quite understand because unlike any other bug infestation a mite is so small you typically can’t see it and what’s even worse is these mites are extremely resilient so when you get to the point that you think you are getting them under control or their almost gone and then they come back with a vengeance it makes you want to give up. I’m so glad I found this book, I only wish I found it sooner. If you are going through a bird mite infestation or know anyone going through one please, please, please tell them about this book it will help them more than you know! And last to Jane Ishka thank you, you are a godsend!” 
–S.E.

“Shining a light on such a little know and often misunderstood topic. No one can possibly comprehend how this tiny invader can ruin relationships, lives and drive you to the brink of insanity only to be told by health professionals that you are delusional. Great read, thank you Jane.”
-Just Me

“This is an important book about the under-recognized problem of mite infestation. Last September, something we couldn’t see started biting us in our home, and we thought it was mosquitos until the weather turned cold. Then, after researching online, we realized that we probably had microscopic mites left over from an earlier mouse infestation. Before this experience, we had no idea that a few species of animal mites sometimes attack humans.

As the book explains, mites can be difficult to catch, and the bites affect some people worse than others. Many individuals may be unaware of an infestation because the bites don’t bother them. For people who are sensitive to the bites, however, an infestation can be an ordeal, as Ishka attests. Because the effects of the bites may mimic other physical and emotional conditions, sufferers are often misdiagnosed; so the problem may be more common than many doctors and even entomologists realize. We need more public awareness about mite infestations to stimulate research for better diagnostic techniques and miticides than are currently available.

Many thanks to Ms. Ishka for her intelligent narrative, dry humor, and wise coping strategies. She has inspired me to do a lot of work around the house to make the place less hospitable to mites.”
–djchabot

“I cried when I read this book. I’ve been battling bird or rodent mites for 5 years, and I feel so alone. I am an educated person–I have a Bachelor’s in Biology, but I have never felt so defeated as I have by these mites. I’ve tried everything under the sun, spent tens of thousands of dollars, but it is never enough. I’m so glad Jane Ishka wrote this book—not just because I relate to her experience, but because she is calling for the medical and scientific community to step up. We need publicity and research. We need help. If you are suffering from mites, this is the book to read.”
– Infested

“Very helpful, comforting and intelligently written. Finally some protocol information that makes sense as well as current scientific information. A mite infestation can completely derail your life and any plans you might have had for it. It is very easy to feel alone and unheard. I am thankful that Jane Ishka has spoken out for those with no voice. I hope that the CDC, the medical community and the pest control industry read this book so that progress can be made and we can get our lives back.”
-Amazon Customer

“Finally an authoritative- and absorbing- book on the horrendous phenomenon of bird mites. Jane Ishka also has a website. Her clear protocol, sense of humor, and ultimate health all give hope to those of us dealing with this. I can’t say enough about my gratitude to her for writing this book”.
– PW

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.

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.

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.

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.

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