I opened a file drawer and extracted 12.4 pound medical records organized into two major tapes. Tucked in the top binder's front pocket was a grainy image of my husband and I was sitting on a thick beach on a small island near Martha's Vineyard in Massachusetts. My husband, slim and fit, smiled at the camera, happily ignorant of what was happening. Our two sons, 10 and 12 years old, were just outside the reach of the camera and playing in the surf. A date stamp was burned into the lower right corner of the image, which said July 22, 2002.
This was our last day of perfect health.
What followed was years of misery that started after my husband and I was bitten by unseen rafts. My cross had secretly buried herself on the back of my head, creating a chronic gray lesion, a tip bit granuloma, to be surgically removed one year later. My husband never figured out where he was being bitten. Finally, we both tested positive for Lyme disease bacteria and malaria-like Babesia parasites. While most cross-borne diseases can be cured with an early dose of cheap antimicrobial drugs, the delays in our treatment resulted in chronic condition, and we joined the estimated 1 million to 3 million people in the United States suffering from sustained Lyme disease symptoms.
I was an engineer trained to solve complex problems and a science writer in business. As soon as I was diagnosed, I began to read everything I could about the Lyme disease. It soon became clear that there was an astounding gap between how the medical company considered the disease and how it was experienced by cross-patients.
The academic researchers who wrote the clinical guidelines for the Lyme disease said it was easy to diagnose, treat and cure. Lyme patients insisted that the test and symptom lists were inaccurate and that the recommended treatment – a short course of antibiotics – did not cure the disease in all cases. In light of all these contradictions, I began to look for answers, and along the way I produced a documentary and a book that explored these problems.
Bottom Line: The problem of tip-borne diseases is much more serious and widespread than most people realize, with reported cases of Lyme disease tripling in the United States since the late 1990s. Based on more than a decade of research, I believe that our medical system is structurally designed to marginalize and misdiagnose bugs patients.
The slider into a mysterious disease
One week after my husband and I returned to California from Martha's Vineyard, we both experienced terrible flu-like symptoms. I was so weak I had to climb up to my second floor bedroom. We went together to see the doctor on calls at our community clinic. I told her about our Martha's Vineyard vacation and suggested that we could have Lyme disease. She dismissed the idea and told us that we probably had a virus and that we should come back if the symptoms got worse. Next week we returned to his office sick than the week before. She still thought it was a virus, but she gave us a referral to see a contagious nurse.
We couldn't get a deal with the specialist until December 5 – more than five months after leaving Martha's Vineyard. During our 10-minute agreement, I told him about the Lyme problem on the island, but he didn't try it out for reasons he didn't explain. Instead, he tested us for parvovirus and gave us three weeks of a drug called iodoquinol to treat possible intestinal parasites.
This drug gave us the first relief from symptoms since our holiday, but when the course ended, our symptoms turned more serious than ever with growing and decreasing combinations of exhaustion, brain fog, constipation, explosive diarrhea, head / neck / muscle pain , nerve problems, twitching, blurred vision, light and sound sensitivity, loss of time / place / self and the inability to read, write or perform the cognitive tasks required for daily life.
In January, I called the infectious diseases doctor in tears and asked for more antibiotics, but he refused to say: "We cannot treat you based on a positive response to drugs." Then he said he thought we were suffering from a "psychosomatic couple of things".
I decided to seek another doctor. It was May – 10 months after our journey – before we could get an agreement with two infectious nurses at a nearby academic clinic. They ordered a number of tests, including one for Lyme disease. All the tests came back negative with the exception of my Lyme test. My husband's Lyme test came back negative. The doctor said my test was a false positive and he would ignore it. The younger of the two doctors told us that the odds for both of us to get the Lyme disease would be like winning the lottery. Then the more senior physician fired us as patients and said he didn't have tools to treat people like us. He recommended that we seek advice for depression.
By this time, I was so incapacitated that I had to close my tech marketing business. My husband, a Silicon Valley engineer, went ill every day because we needed his employer insurance. We realized we might never recover. And in the middle of the night, our inflamed brains were combed on a thought, never spoken loudly: What will happen to our boys?
With the first solid lead in our 10-month case, a positive Lyme test, we found a recognized physician who specialized in cross-borne diseases through a Lyme support group, and we began to find a path to recovery.
The barriers to being diagnosed for Lyme disease
It took 10 doctors, a year and $ 60,000 to finally diagnose our two serious tick-borne diseases. At that time, our microbial invaders were deeply rooted in our brains and tissues. It took another six years of on-and-off antimicrobial treatments to return to health. Due to lost wages and medical expenses not covered by insurance, we burned through our savings and our sons' college funds. We had to take a home equity loan to get the ends to meet.
But I consider ourselves among the lucky Lyme patients. Unlike many of the hundreds of patients I experienced while recording and promoting the document Under Our Skin we were able to return to work. We have enjoyed it for years. My latest interviews show that even now, years after our trial and with Lyme cases, patients are still having trouble diagnosing.
Based on my book and film research, I believe that the cause of the Lyme misdiagnosis problem is the persistent mythology that the disease is over-diagnosed and that the testing is correct. The main advocates of this view recently published "Lyme Disease in 2018", a point of view in the prestigious Journal of the American Medical Association . Throughout the essay, the authors minimize the impact of the Lyme problem, and in abstract they say "There has been no statistically significant increase in reported cases of Lyme disease in the US over the past 4 years (2013-2016) for which data is available. "
This is in stark contrast to the April 2019 Declaration on the Lyme Disease of the Centers for Disease Control and Prevention, which said that Lyme is rapidly spreading to new geographical areas and that" Tickborne Diseases increasingly threatening public health in the US. "While most Lyme cases are concentrated in the northeast and northern central states, cases of Lyme have been reported in all 50 states today. In 2017, there were almost 60,000 cases of cross-borne diseases reported to the CDC.
The researchers at the CDC & # 39; who are studying the spread of disease now say: "Reported cases only take a fraction of the total number of people with cross-borne diseases." The CDC is "unclear" for the reasons for the rapid spread of ticks and related diseases, although they mention land use change and climate patterns as important factors.
When we found out the hard way, rafts scattered many other diseases, many of them lethal and the symptoms of mixed carcinoma – Rocky Mountain spotted fever, babesiosis and Lyme disease to name a few – are not well documented in the medical literature. Spotted fever can send people to coma within 14 days. Babesiosis, a red blood cell infection, can be fatal to people with damaged or missing spleen. If the Lyme disease is not treated rapidly, it can lead to life-threatening cardiac manifestations and chronic neurological problems. Gradually, it is easy to see how our whack-a-mole mix of symptoms, especially brain inflammation and pain, unmistakable and invisible to doctors, made us act as hypochondriacs.
Few doctors realize that the recommended two-tiered Lyme disease test protocol is outdated and inaccurate. A 2007 study in the British Medical Journal showed that the protocol lacked "88 of every 200 patients with the Lyme disease." Another UK meta-analysis of Lyme test packs, published in International Journal of General Medicine on November 18, 2016 concluded: "An important clinical consequence of our conclusion that current Lyme testing lacks sensitivity is that many genuine cases of LB [Lyme borreliosis] may be under-diagnosed. "
Instead of measuring for the physical presence of the Lyme microbe, the commonly used tests depend on measuring the body's antibody response to the microbe. So a Lyme-infected person can test negative in the first month of infection if their immune system has not produced enough antibodies to be measured. Or in my husband's case, if the antibodies at the time of testing were tied up against Babesia, the Lyme antibody test can read negatively. After his bacterial load was lowered by a brief antibiotic treatment, he tested antibody-positive for both his cross-borne diseases.
A better method of testing would be to screen blood for specific DNA markers for multiple cross-borne diseases in a race, but it will take time for these tests to move from the research laboratories to clinical use.
What to do if you are bitten by a cross
People ask me what to do to avoid what my husband and I went through. I tell them that prevention should always have the highest priority: pulling socks over the pants leg, spraying off-clothes and making daily check-checks. However, there are sometimes ticks, with skills widespread over 120 million years of evolution, slipping past these defenses.
ticks are infections that can transfer several species of disease-bearing organisms into the blood within a few hours (although your chances of getting Lyme disease are low if a cross is attached for 36 hours or less according to the CDC). When a tick is dropped into a blood vessel, it releases chemicals that suppress the immune system for a week or more, giving the bacteria a dangerous start. So if you suspect that you may have a tick-borne disease, your first goal should be to start treatment as soon as possible.
If you catch the cross that bites you, send it to a laboratory that will analyze it for its microbial hitchhikers. The Bay Area Lyme Foundation will test fleets for free using advanced techniques at the University of Northern Arizona. It is not fast, but by sending your intersection, you participate in a civic science project to track the spread of ticks and associated diseases. Ask your doctor if you can start taking antibiotics while waiting for results. If you have a rash, take a picture of it next to a ruler so you can see if it expands over time, a sign that you have a Lyme disease. Know that the test on the bitch is not foolproof – both positive and negative results can be misleading – so watch out for symptoms, no matter what the results are.
Find a doctor who has experience in treating tick-borne diseases. If you had a brain tumor, you would probably seek a doctor with great experience in treating the specific type of cancer. The best way to find doctors trained in the treatment of complex thick-borne diseases is to contact the International Lyme and Associated Diseases Society, a non-profit organization that can send you a list of practitioners in your area. Don't waste valuable time trying to convince an inexperienced doctor that you're really sick. Find an expert who knows which substances are most effective for each of the cross-co-infections and in what order they should be treated.
Treatment for Lyme is too often delayed – but hope is on the horizon
As I wrote This story, I showed the 2002 beach photo to my husband and asked him what he thought of the couple in it, 17 years ago.
"Naive," he said.
"If you could return time you would do it?" I asked.
Now that I am on the other side of my cross-borne diseases, I spend a lot of time helping others avoid the trials that my family went through. Here I bid on my personal story as a burnt offering, a warning, in the hope that others can avoid the mistakes we have made.
The causes of the misinformation associated with cross-borne diseases are multifaceted and complex. One of the primary causes of Lyme disease has been ignored by the pharmaceutical industry, a force for good in other diseases that there is no money in it – the cure is an early dose of off-patent, cheap antibiotics. Although there is an excess potential with a Lyme vaccine (one is in development in France), it does not provide protection against other serious tick-borne diseases, so it can never be commonly adopted. With no precise diagnostics on the market, Lyme patients are often misdiagnosed with fibromyalgia, chronic fatigue, multiple sclerosis or irritable bowel syndrome. So for pharma companies, the right money in treating the daily symptoms of chronic Lyme disease – pain, depression and inflammation – is with lucrative blockbuster drugs.
There is no medical insurance refund code for chronic Lyme disease. Medical insurance companies are under tremendous pressure to reduce costs, and labeling chronic Lyme as a "syndrome" rather than a legitimate disease gives them reason to deny the expensive ongoing care costs for these very ill patients.
A close study of the backstory of Lyme disease shows other factors that have destroyed the basic science of Lyme disease. In I explain under our skin how the researchers' financial interests in vaccines and test packages may have adversely affected the initial definition and diagnostic recommendations for the Lyme disease. In my book Bitten I examine evidence suggesting that the original Lyme outbreak was caused by a bioweapon's release of an organism left out of scientific publications. This book, a call to action for scientists, asks the question "Could an unknown human-engineered microbe help to confuse the confusing set of symptoms that tickbit patients experience today?"
This leaves us with a medical system that is structurally designed to delay treatment and do damage to tick-borne disease patients.
But there is hope in the horizon.
This year, the CDC announced that it would improve its passive threshold-borne disease tracking system by funding a more coordinated national monitoring program. And there are a few companies and universities that work with more accurate and faster diagnostics for all the cross-borne diseases. But these structural corrections will not happen anytime soon.
Meanwhile, the best advice I have to offer is to take responsibility for your health care. Do your research before you go to the clinic and find a doctor who will be outspoken about the real risks of cross-borne diseases. Realize that you might have to struggle to be tested and treated with protocols that will restore your health.
Kris Newby is an award-winning science writer at Stanford University and the senior producer of the Lyme Disease Documentary under Our Skin . Her new book is Bitten: The Secret History of Lyme Disease and Biological Weapons .