The sharp yet musty smell of alfalfa grass drying in the sun filled my nose as I army-crawled up my parents' field. My small body cut a tunnel through the grass wherever I ventured, all around me were walls of green grass and gold dandelions. I flipped on my back, peered through the blades that draped over my face, pretending to be a bug like the grasshopper I saw rubbing his back legs together. I laid there and watched the clouds, then crawled at a 90 degree angle, three times around, making a little square “fort” in the middle of the field. Did I get bitten by a tick at some point in my childhood in the 1980s in Vermont? It could’ve happened. If it did I never heard about it, or it was unremarkable. Perhaps if I was bitten and there was no tick, we assumed it was a splinter, and my mother deftly tweezed out the black spot with her needle, burned in the candle to sanitize it.
Or did I contract Lyme disease camping by the side of the highway in Ohio, when I was 19 years old and following the band Phish across the country? If it was, I supposed I deserved it. Or was it in Portland, Oregon when I was 33, sick with a flu and an insect bite on my shin that had been weirdly slow to heal? The doctor was new to me, filling in for my regular physician that day, and he refused to run blood work, telling me it was just an ear infection. When I pressed him, saying that I had horrible flu-like pains in my hips and knees that seemed to move from one side to the other, he walked out of the exam room. The more I learn about Lyme disease, the more I believe it doesn’t really matter where I got it. Maybe I didn’t get it from an insect at all.
According to the CDC, you can only get Lyme disease from a tick. The CDC website reads “It is transmitted through the bite of infected blacklegged ticks.” The WHO website is more general and says “Lyme disease, or Lyme borreliosis (LB) is a bacterial disease transmitted to humans through the bite of infected ticks.” Both agencies define the disease as being treatable with two weeks of antibiotics. Currently, the CDC admits to what they call Post Treatment Lyme Disease, and it is estimated that of the roughly half a million Americans who are diagnosed each year, up to a third of them do not recover. So what does the CDC recommend for patients like me? Basically, manage symptoms and wait. Talking to your doctor about managing your symptoms might be the new American dream, for these folks, and many more people living in the greatest medical system in the world.
We bought new construction, on the edge of the Deschutes National Forest. It was thirty miles from town, on a dirt road, but it gave my husband and I, both raised in the country, the feeling of home. When my eldest daughter was three months old, I watched an elk herd cross single file on my neighbor's property. All I could hear was the elk breathing, and the crunch of their hooves in the snow, so carefully, hiding in the shadows of 4 a.m. The house had been built custom by a construction company out of Redmond, Oregon, commissioned by a family like ours. They received a job offer elsewhere and never ended up moving in. It seemed too good to be true. We moved in with our one-month old baby, and I began to make it a home. Unfortunately, my health would go downhill every single month I lived there.
The old saying “they don’t make ‘em like they used to,” is quite literally true. The history of mega-construction companies churning out substandard homes goes back to post WW2, when all the soldiers returning from the war created a demand for housing like never before. This required a whole new way of building homes, and as the cities burst at their seams, the American suburb grew. The GI bill, passed by Roosevelt in 1944, allowed consumers to purchase homes with only 5% down for the first time.
Before this, houses in America were built one at a time, by local craftsmen, whose hands touched every single part of the home from the foundation to the roof. In 1946, the first suburban housing development, known as Levittown in Long Island, New Jersey, was built on an assembly line. Built this way, the homes that came to be known as the Sears catalogue homes, (because you could mail-order them from your Sears catalogue,) could be built in a day by 36 men. With even more men, companies could build a new home every 16 minutes. Infamously, the builders of Levittown wouldn’t lend to people of color, and there was a general campaign marketed towards the suburbs being a safer home for white families.
Traditional American building materials in most cities and rural dwellings before WW1 had walls made of wood, brick, stone, or plaster. Drywall was invented as the poor man’s plaster in 1916, but it didn’t gain popularity until the post-war housing boom; drywall could be assembled ten times faster than traditional plaster. By 1945, the predominant building material in the US was drywall made up of two paperboards with gypsum in-between them. Gypsum is a powdery grayish-white substance that is classified as a sulfate. It comes from two sources: mines, or it is engineered from a by-product of coal power plants. Drywall was marketed to the public in large part because gypsum is inherently non-combustible.
The problem is, walls made of drywall are more porous than walls made of traditional building materials. In addition to being hard on the environment in almost every step of production (mining and working with gypsum is hazardous), it is especially prone to mold. Americans were reminded of this when, during Hurricane Katrina, millions of homes were damaged beyond repair. Old-fashioned plaster homes survived the hurricane, and many are still standing today all over this country. What started out as an innovative new way of constructing middle-class homes forever changed the landscape of the way we live. We quite literally live in paper houses.
There are over 100,000 species of mold. Every single time you hike in the woods, you are walking on roughly 300 miles of mycelium, branching deep below the surface of the forest floor. Mushrooms are the fruit of the organism. The majority of the organism is underground; long, skinny threads make the fungal mass called mycelium. Recent research has revealed that mycelium works in the same way as our neural network, with electrolytes (salt) and electrical pulses. They form massive links, huge webs throughout the forest that the trees use to feed one another; swapping nutrients between trees when one tree is lacking in something.
Fungi are helpful to our forests, and are crucial to the health of the planet. Most recently, a specific type of fungus proved to be one of the only substances capable of composting oil. Before antibiotics were invented, soldier’s infected wounds were treated with a poultice of moldy bread. When Alexander Fleming discovered penicillin in 1927, the winning strain of mold that could kill dangerous pathogens was found blooming on a rotting cantaloupe in the lab. Bourbon is made from sapons from moldy corn, and one of my favorite cheeses, blue cheese, is the same mold as penicillin. Like any other organism, fungus creates enzymes to protect itself from competition. This is how antibiotics work; the fungus puts out mycotoxins to protect itself from bacteria, and also protects the host from the bacteria. Mushrooms are powerful, and like all powerful things they can help or harm, depending on the usage and the dose.
The most common drywall mold is Staccybotrys, a mold that is infamous for being difficult to smell, and also for not needing any additional moisture source besides the air to grow. Most molds need a water source, a hidden leak somewhere, to feed their fungal colony. Not Stachybotrys, often called simply black mold by those of us who have been sickened by it.
Sharing what happened to my family started as simply an outlet. But, the more I shared my story, the more messages I got from others who have Lyme. Unless it was an acute case of Lyme where they got the bite and were treated right away, they all have mold in their story. The rare individuals that do not have mold in their story, I suspect they haven't found it yet. Functional medicine and Lyme specialists acknowledge the connection between mold and Lyme. My doctor was the one who told us there was mold hidden somewhere deep in our seemingly pristine dream home. The scientific community is still searching for answers, but the best explanation is that long term exposure to toxic mold can suppress the immune system, allowing opportunistic bacteria to flourish. If someone is harboring a stealth infection, but it has mostly been cleared by their immune system, they may never experience symptoms. Some scientists believe that these infections remain dormant until old age or other stressors like mold arise.
Since 2005, studies have been accepted by the international scientific community acknowledging sick building syndrome, or toxic mold in buildings, as public health hazard. Similarly to how it will not acknowledge chronic Lyme disease, the CDC doesn’t acknowledge mycotoxins as an actual biotoxin. They acknowledge that it can cause respiratory symptoms. That's it. Nevermind that studies since 1994 have shown mycotoxins to be an immunosuppressant, and that the USDA outlines more guidelines on how to protect livestock from mycotoxins than the CDC does for human beings. Additional studies have shown that mold in homes may be responsible for the rising rates of asthma diagnosis, which have increased by 43% in the last twenty years. Mycotoxins have also been proven to cause cancer, mental impairment, internal organ damage, and in some cases, death.
In his book, “People of the Lie,” Scott M. Peck says that the smallest things we do not admit to become the greatest evil in our lives. Looking at all of the information I have read about Lyme, mold, and the insurance agencies, it is hard not to see the collective cognitive dissonance we are living under in this country. We are sicker than ever, but instead of digging into some of the most innovative studies about Lyme and mold, we follow the information that organizations like the CDC, IDSA and EPA maintain, even if it is twenty years old. These agencies are allowed to operate with little oversight, and yet they write the very guidelines that the medical system and insurance agencies use to determine what treatment the doctors will prescribe and what the insurance companies will cover. The FDA is paid $300,000 by big pharma for every drug they test, making up almost half their budget. It's hard not to see how the FDA no longer works for the American people, instead working on behalf of drug companies’ and their stakeholders.
When we found mold in our home, we had already been in treatment for Lyme disease for six months, but it wasn’t working fast enough for our doctor. We were elated to have finally found a reason for our bad health, but it was actually the beginning of a very long road. We lost most of our belongings. The hardest objects for me were baby books, childhood pictures and letters. None of the thousands of dollars of mold remediation or our lost belongings was covered by the insurance company or by the construction company's warranty, despite being 100% due to building mistakes.
Insurance companies only cover mold if it is caused by a natural disaster. People like us have zero recourse, and must undergo losses that equal to that of a fire, but with no insurance coverage. In addition, people like us who live in black mold for years are often left with CIRS and Lyme, both chronic conditions, few medical insurance companies cover testing or treatment. We are extremely blessed that our insurance company covered some of the treatment. The mold remediation company we used for our home has testified before Congress about the lack of recourse for shoddy construction like we found in our home. Who is looking out for the health and wellbeing of the American people as far as what the construction industry and it’s insurance representatives aknowledge as a health hazard? The parallel to the health care system, with its conflict of interests and lack of oversight, is eerie. The main take- away is that our lives are in the hands of people who have lost sight of the value of human life over the almighty dollar.
In 2021, US State Representative of New Jersey, Chris Smith, celebrated the House passing an amendment he had been pushing for ten years, asking for a federal investigation into whether Lyme disease was an escaped biological weapon. He said:
“The millions of Americans suffering from Lyme disease have a right to know whether any of this is true, and if any old research documents could be applied by current-day scientists to find a better diagnosis or treatment- something that’s desperately needed.”
The legislation requires the US government to report findings to Congress about if the Department of Defense experimented on ticks for use as a biological weapons from 1950 to 1977, including the experiment's scope or whether any insects were released by accident or by experiment design. Although Chris Smith has been advocating for Lyme disease research since the mid-90s, (his state is one of the hardest hit with endemic Lyme,) it was a 2019 book called “Bitten,” by Kris Newby, that reinvigorated his campaign.
Kris Newby and her husband suffered from chronic Lyme disease after being bitten by ticks in Martha's Vineyard in 2002. They spent years of their lives and tens of thousands of dollars on Lyme treatment, all the while being told what they had didn’t exist by many doctors. Newby made a good point in her book, positing how Lyme was discovered in 1981, and yet 41 years later we have no reliable test or treatment for Lyme disease unless it is caught within a couple weeks of contracting the bacteria. Newby made two award-winning documentaries about her experience with Lyme disease, and when she got her health back she thought she was retired from filmmaking about Lyme. A few years later, she received a package in the mail with video footage from another documentary filmmaker, and the footage was Willy Burgdorfer, the discoverer of the Lyme disease bacteria. On the video Willy said outright: he worked with ticks in biological weapons facilities in the US during the cold war.
Before he died, Willy allowed Newby to go through his garage where he had kept copies of many of his government research files. Willy’s original lab notes, letters, and interviews suggested that in addition to the Lyme bacteria, he was putting biological agents like Venezuelan equine encephalitis in ticks. At one point, Newby even spoke with an ex-CIA operative who claimed he had dropped two tick-filled canisters over Cuban sugar plantations during Operation Mongoose. After he returned from the mission, his 4-month old daughter became severely ill with a relapsing fever so severe she underwent an emergency tracheotomy due to high fever. The baby survived and eventually recovered. When the agent shared this unusual occurrence with his boss he was mysteriously told “burn all your clothes from Cuba.”
There are those who claim that ticks would make such a poor biological weapon that it makes this premise ridiculous. When you look at Operation Mongoose as well as the general history of biological warfare in the US, it seems like a pretty flimsy argument against Willy’s end of life confessionals. For one thing, Operation Mongoose was known for ridiculous ideas. After the Bay of Pigs, Kennedy wanted to prevent nuclear war at all costs, but also wanted to get revenge on Castro by any means possible. He gave the CIA free range to take him down, and they created a covert special group made up of policy makers and intelligence professionals to come up with ideas to do so. No one had any oversight of this group, and this led to outlandish ideas and abuse of authority.
Documents released to the National Archives in 1997 showed the CIA had entertained ideas such as a toxic diving suit infected with tuberculosis and Madua fungus, an exotic seashell rigged to explode when Castro (an lifelong diver) picked it up, and a poisoned cigar. Other ideas called for a space launch at Cape Canaveral to be sabotaged and blamed on Cuban agents. Operation Bingo called for a staged attack on Guantanamo Bay, which would allow the US to declare war against Cuba. There are seven pages in the report detailing what constituted an exotic enough shell to capture Castro’s interest, so the idea that ticks may have been experimented with as well, doesn't seem that far fetched.
The US government also has a long history of experimenting with infectious agents, even on its own people. In 1950, Operation Sea Spray was conducted by the US Navy, who released a spray of microbes into the air, to test how it would spread amongst the residents of San Francisco. The bacteria was thought to be harmless, but eleven residents checked into the hospital with rare, serious bladder infections and one of them died. Doctors later wondered if the experiment might have been responsible for a rash of heart valve infections at that time, but it has never been proven. In 1965, the US Special Operations Division spread bacteria through Washington's National Airport. A year later, in 1966, they dropped light bulbs filled with organisms onto the tracks of the New York City Subway system. In1965, an operation called Big Tom sprayed bacteria over the Hawaiian island of Oahu to simulate a biological attack. The test used Bacillus globigii, which was supposed to be harmless at the time. Researchers later discovered that this bacteria is a close cousin of Anthrax, and can cause severe to fatal infections in people with suppressed immune systems. In 1951, the Norfolk Naval Supply Center in Virginia, a massive base that provides equipment for the entire Navy, was blasted with fungal spores to see how it would affect the workers unpacking supplies in the warehouses. Sadly, most of the workers were African-American, and scientists wanted to see if they were more susceptible to fungal disease than white people. Zinc cadmium sulfide was sprayed over St Louis, Minneapolis and possibly more cities in the 1950s, to test biological weapons on terrain that was seen as similar to Russian cities they wanted to create attack plans for. Although the amount of the toxin used was supposed to be safe, sociology professor Lisa Martino-Taylor asserts in her 2012 research that cancer rates spiked during and directly after this testing. The US government has admitted no wrongdoing in any of these cases.
Where does this leave the millions of Americans suffering from chronic Lyme disease who aren't offered a reliable test or treatment for their disease? Even if the disease is treated with the requisite dose of doxycycline, there is a 30% treatment failure rate. Chronic Lyme disease specialists and researchers believe Lyme has contributed to the massive rise in cancer and other chronic illnesses in this country. Scientists have found spirochetes hidden in metastatic brain and breast tumors. Lyme and other stealth infections like Epstein-Barr have been found in the spinal fluid and brain tissues of patients with MS, Parkinsons, and Chronic Fatigue Syndrome. Willy claimed towards the end of his life that he was also injecting a pathogen called Rickettsia helvetica in his experiments, which can cause cardiac failure, meningitis, muscle soreness, facial palsy, and deafness. Newby found a letter Willy wrote to a colleague, stating that blood from Lyme patients “showed very strong reactions” on a test for Rickettsia helvetica. Rickettsia, or “The Swiss Agent'' as Willy called it, is screened for in Asia and Europe, but not in the US. A Lyme doctor in 2022 will test their patient for co-infections, as it is well known that ticks almost never carry just one pathogen. But, they can't test for what they don’t believe exists. Could this in part explain the patients who don’t get better? More research is needed to be sure.
In her documentary, “Under My Skin,” Newby questions the official medical guidelines on Lyme, written by the Infectious Disease Society of America (IDSA.) Furthermore, at least three members of this panel are investors in the Lyme disease vaccine, which has been under development with Pfizer for almost a decade. It would stand to reason that if you owned the vaccine, you wouldn’t want to admit that chronic Lyme exists. After all, you cannot vaccinate an already infected population and the half a million Americans who have chronic Lyme would automatically be disqualified. Furthermore, a 2022 study conducted by BMJ Global Health found that more than 14 percent of the world’s population has been infected with Lyme disease. This is the first global seroprevalence study, which means looking for immunity markers in the subjects’ bloodwork. The CDC says that Lyme disease diagnoses have increased 44% in twenty years, from 1999-2019. There was already a Lyme vaccine on the market in the late 1990s, and it was pulled. Although it was supposed to be safe, it had gotten a bad reputation because it caused arthritis in some participants. Pfizer's vaccine, set to come out in 2025 and currently moving into the final stages of drug trials, is the only new research development for Lyme disease in the US that the powers-that-be will acknowledge. Some doctors follow European guidelines for pulsing three different types of antibiotics as the best chance of curing post-treatment disease. Other doctors follow the CDC guidelines exactly, which do not recommend long-term antibiotic therapy. Many doctors herald a Lyme disease vaccine as the only way to get the increasing number of infections under control, without asking: if we are admitting this is such a huge problem, why there is no effective test or treatment that the CDC or IDSA is willing to look into?
In 2017, a group of Lyme disease patients sued the IDSA panel for fraud claims, based on the IDSA’s denial of chronic Lyme disease, alleging conspiracy between the IDSA and health insurance companies. The lawsuit was dismissed, but this is not an isolated incident. In 2008, the Attorney General of Connecticut concluded a antitrust investigation into the development of Lyme disease treatment guidelines by the IDSA. The investigation found “significant irregularities in the IDSA Lyme guideline development process, including significant conflicts of interest among the guidelines panel members.” One researcher on the IDSA Lyme guidelines panel was named specifically for working with Lyme vaccine manufacturers for over a decade, while sitting on these special interest panels. Despite these findings, there is no plan to reexamine the US IDSA clinical guidelines for Lyme disease. In addition, although the IDSA claims that these are merely guidelines and doctors are not obligated to follow them, the IDSA has testified against doctors, and this has led to doctors losing their licenses for not following their guidelines. This is still happening today, even though there is mounting scientific evidence that chronic Lyme needs to be treated or it can turn into neurodegenerative illnesses, heart failure, and more.
A University of New Haven study in 2020 showed that out of 400 invasive breast cancer tissues, a significant number of samples were positive for Borrelia, the Lyme bacteria, suggesting that Lyme may play a role in the development of breast cancer. Other recent studies have shown that Lyme shows up in genetal secretions, suggesting that Lyme might be communicable, just like its close cousin, another spirochete, syphilis. Studies have also shown it can be passed down from mom to baby. The CDC and the IDSA doesn’t acknowledge any of this research. They don’t even acknowledge that it can be spread by any other type of tick besides the black legged tick.
After my last blog, I received an email titled “Feedback,” with the author letting me know that she feels I am “alienating good people,” by expecting support from her. She said she wanted to “gently remind me” that she has lost a child to cancer, saying she “never expected anything from anyone when she went through hard ***.” In 2017, a study showed that there were1200 suicides directly related to the effects of Lyme disease. Furthermore, negative attitudes about their disease from doctors and family members was a huge contribution to their poor quality of life. My family was completely and totally involved in supporting this person when her child was dying of cancer. Of course. Maybe that is why she feels she didn’t expect anything— she never had to fight for recognition of her experience. What happened to her is unimaginable, so much worse than what happened to us, so it was difficult to receive this email and not want to set myself on fire with shame. But, I remembered how serious what we went through was, and how little our immediate families have acknowledged it in any way. It became an awkward topic after a certain point, with palpable skepticism on their end. The email, couched as advice, did not feel gentle. The worst part is that it’s intent was exactly what it claimed to not be: it was intended to shame me into letting my hurt feelings go. Into silence. My own heart was heading towards failure, as well as my liver and kidneys, when we finally found the toxic mold. My daughters both have Lyme and CIRS, and although I will only share little bits of their story to protect their privacy, it has deeply affected their lives. PANS/PANDA has been one of the worst symptoms to see them go through.
I can’t stop sharing about this, even if it is alienating those who compare hardships. I am incredibly grateful that my children do not have cancer and are alive. It is something I pray and worry about constantly after losing more than one family member to cancer, like so many of us have. Like I said above, I’ve heard from so many Lyme/mold patients or their family members, that they are not able to work or live life like they used to. Many of them can’t afford or access treatment, at all. Google Lyme disease and death on the news and you’ll see the reality of where this disease progresses.
I had a friend reach out, concerned that she wasn’t supportive of me when I got sick. I’d like to clarify— when I talk about people hurting us by not being supportive, it is immediate family members or once-close friends we had regular, if not daily, interactions with that I am discussing. It was the most basic level of acknowledgment we expected, from our primary support system. I have learned that in general, people don’t want to hear about illness after a few months, especially if they’ve never experienced long term health problems. A dear friend reminded me this attitude is also societal; being sick is for the weak in America. More on that in the next installment.
Now, I am grateful for this experience. It has lit a fire within me to learn and share as much of this information as I can, so that it might help someone else have their experience validated. And it has opened my eyes to how corrupt the medical system and the government really is. Until the US government is honest about chronic Lyme and where it came from, or even just changing the guidelines so health insurance companies will cover better Lyme illness testing and treatment, patients will continue to be bullied. It is identical to how it feels having mold illness; even after finding high levels of mycotoxins in their homes or bodies, many patients aren’t believed by doctors, family, or friends. If you are sick and need support, feel free to email me anytime. houghton.jamie@gmail.com.
Stay tuned for the next installment, part 3, where I will dive into more corruption and medical gaslighting in the medical system and the multitude of studies linking deadly and degenerative diseases that may actually be caused by stealth infection.
Sources:
https://www.scientificamerican.com/article/strange-but-true-largest-organism-is-fungus/
https://www.nestrealty.com/blog/ill-huff-and-ill-puff-building-materials-in-american-history/
https://www.today.com/today/amp/rcna49473
https://www.nestrealty.com/blog/ill-huff-and-ill-puff-building-materials-in-american-history/
https://www.thedailybeast.com/the-postwar-housing-boom-wasnt-all-sunshine-and-roses
https://bauerleroofingllc.com/history-of-drywall/
https://www.statnews.com/2016/10/12/swiss-agent-lyme-disease-mystery
https://www.columbiapsychiatry.org/news/lyme-disease-heightens-risk-mental-disorders-suicidality
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/
“Fantastic Fungi” 2019 Directed by Louie Scwartzberg
“Bitten, The Secret History of Lyme and Biological Weapons,” Kris Newby, Harper Wade, 2019