Lyme 101: What You Need to Know to Avoid Lyme Disease (Caren & Victor’s Story)
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Lyme Disease is devastating, we know. Victor and Caren have Chronic Lyme. We will do everything we can to help people avoid the horror of Chronic or “Late Stage Lyme”. Scroll down to see more of their personal story. Chronic or Late Stage Lyme often goes undiagnosed for many years. If you or a friend has been given the diagnosis of Fibromyalgia or Chronic Fatigue Syndrome, look into Lyme as a possible root cause. The article below contains the basics to help you avoid this disease so easily spread by dogs, wild mice and deer in all 50 US states and all over the world. <3 Caren
Excerpted from LymeDisease.org:
Lyme disease is a bacterial infection primarily transmitted by Ixodes ticks, also known as deer ticks, and on the West Coast, black-legged ticks. These tiny arachnids are typically found in wooded and grassy areas. Although people may think of Lyme as an East Coast disease, it is found throughout the United States, as well as in more than sixty other countries.
The Centers for Disease Control and Prevention estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher.
Lyme disease affects people of all ages. The CDC notes that it is most common in children, older adults, and others such as firefighters and park rangers who spend time in outdoor activities and have higher exposure to ticks.
LymeDisease.org has developed a Lyme disease symptom checklist to help you document your exposure to Lyme disease and common symptoms for your healthcare provider. You will receive a report that you can print out and take with you to your next doctor’s appointment.
What Is Lyme Disease?
Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.
Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression. Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked.
How Do People Get Lyme Disease?
Most people get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not even realize they have been bitten.
Once a tick has attached, if undisturbed it may feed for several days. The longer it stays attached, the more likely it will transmit the Lyme and other pathogens into your bloodstream. Refer to tick section.
If pregnant women are infected, they sometimes pass Lyme disease to their unborn children and, while not common, stillbirth has occurred. Some doctors believe other types of human-to-human transmission are possible but little is known for certain.
Where Is Lyme Disease Found?
Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the East, Midwest, and West Coast. Rates have increased significantly over time. Some of this increase may be because of disease spread, but it is also likely that it reflects growing public awareness of the disease.
Not all ticks are infected. Within endemic areas, there is considerable variation in tick infection rates depending on the type of habitat, presence of wildlife and other factors. Tick infection rates can vary from 0% to more than 70% in the same area. This uncertainty about how many ticks are infected makes it hard to predict the risk of Lyme disease in a given region.
In the South, a Lyme-like disease called STARI (Southern Tick-Associated Rash Illness) transmitted by the Lone Star tick has been described. Scientists are still debating about what organism(s) in the Lone Star tick may cause the disease as well as the treatment of patients with a rash in the South. However, Lyme disease has been reported in certain areas of the South and Southeast and patients with STARI may be quite ill. Because of this, patients in the South with a rash should be treated. (Herman-Giddens 2014)
The risk of getting Lyme disease is often reflected in risk maps. Some maps show the number of human cases of Lyme disease reported for surveillance. These maps may not accurately reflect risk because only 10% of reportable Lyme cases are currently captured by CDC surveillance. Other risk maps show the number of infected ticks that researchers have collected in a certain area. These maps are often not accurate because many states and counties have done little or no testing of ticks in the area. The best maps of risk may be canine maps. This is because dogs are routinely screened for Lyme disease through a nationwide program as well as the close association of dogs with humans.
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Common tick-borne diseases include:
- Lyme disease
- Rocky Mountain spotted fever
- Relapsing fever
- Colorado tick fever
Risks for Pet Owners New info 11-19-19 from LymeDisease.org
Zoonotic Diseases Spread from Animals to People
Members of pet-owning households have a greater risk of tick bites than those without pets.
By Lonnie Marcum
What do the following recent news stories have in common?
- Child who visited county fair is Michigan’s first swine flu case of 2017
- Hantavirus confirmed in Reno, Nevada
- Rabies found in dead raccoon in North Carolin
- Lyme disease risk remains high into fall and winter in Connecticut
- They all have to do with zoonotic diseases—those that are spread from animals to people. In fact, according to the CDC, zoonotic diseases account for over 60% of all communicable diseases causing illness in humans.
Some zoonotic diseases, like rabies, are transmitted by the bite of an infected animal. The rabies vaccine for pets has greatly reduced the number of cases of the disease in the U.S. However, the CDC estimates that 40,000 people per year require rabies treatment, primarily after exposure to bats and other wildlife.
Other zoonotic diseases come from direct contact with an infected animal. For instance, you might get salmonella from handling a baby chick, chicken, duck, turtle, or snake.
Another mode of transmission is through contact with animal droppings, saliva, or urine. Hikers and campers may be at risk of hantavirus from rodent exposure in recreation areas, especially in the Southwest.
Insects and arthropods (like ticks) provide another route of transmission for zoonoses. The infections they carry are known as vector-borne diseases. Lyme disease is currently the most common vector-borne disease in the U.S., affecting more than 300,000 people annually.
The Lyme bacterium is spread when a tick (the vector) feeds on an infected animal like a mouse or a squirrel and then later transfers the illness to a human. According to the CDC, 94% of all vector-borne diseases in the U.S. come from tick bites.
Mosquitoes also transmit zoonotic diseases. The World Health Organization (WHO) estimates that mosquitoes infect more than 700 million people per year, causing in excess of a million deaths—with nearly half of those fatalities caused by malaria. While malaria was eliminated from the US in the 1950s, there are still 1,700 cases reported annually, almost all due to recent travel.
Farmers, ranchers, and veterinarians are at an increased risk for zoonotic infections due to their proximity to animals and outdoor areas where ticks and mosquitoes thrive. Examples of diseases associated with animal husbandry are leptospirosis from horses, anthrax from cattle, Q fever from sheep, brucella from goats, cysticercosis from pigs, and Influenza A from chickens.
Veterinarians are at an obvious risk because they treat sick animals. Bartonella is particularly easy to catch as it can be transmitted from fleas, ticks, or the scratch of a cat. Cat bites are also common in veterinary practice and can result in abscess, septic arthritis, meningitis, even death.
Leptospirosis, one of the most widespread zoonotic diseases in the world, can infect a wide range of animals including rodents, dogs, and cats. It can be easily transferred to humans by contact with urine, saliva, or feces.
Food Handling and Consumption
Zoonotic disease can also be transmitted though consumption of undercooked foods. Examples of this are Ebola from bushmeat (non-domesticated animals), trichinosis from pork, E. coli from beef, salmonella from poultry, Listeria from cheese, and tuberculosis from unpasteurized milk.
Food preparation can be another mode of exposure. The flesh-eating Vibrio bacteria can be acquired from cleaning fish or shellfish. It affects nearly 80,000 people, resulting in about 100 deaths per year in the U.S.
Risk for Pet Owners
Pet owners are also at an increased risk for zoonotic diseases. For instance, giardia can be transmitted by touching contaminated dog feces, pet rats can infect their owners with hantavirus, turtles can carry salmonella, chlamydia is common with pet birds, and many small animals carry ringworm.
A recent outbreak of Campylobacter, linked to puppies sold through Petland, sickened 55 people in 12 different states and hospitalized 13.
Due to proximity to animals and the outdoors, pet owners are also at increased risk for vector-borne diseases. A recent study demonstrated that when compared to households without pets, pet-owning households had nearly twice the risk for finding crawling ticks, and 1.5 times the risk of finding ticks attached to family members.
The “One Health” Approach
“One Health” is a concept that promotes collaboration among scientists
“One Health” is a concept that promotes collaboration among scientists from many different specialties to achieve the best health for people, animals, and the environment.
The One Health approach recognizes that animals and humans are part of a global community. Proximity to animals, travel, and changing climate are all factors that affect the prevalence of disease. For this reason, One Health teams include physicians, veterinarians, ecologists, and many others acting on regional, national, and global levels to achieve optimum health.
Examples of this include when veterinary records are used to predict Lyme disease, or when health officials successfully reduced the transmission of Rocky Mountain spotted fever on Native American reservations by putting flea/tick collars on stray dogs.
As with all disease, prevention is key. The best method for preventing infection is to avoid exposure. However, if you own pets, or live, work or travel in an environment where you are exposed, there are several steps you can take to reduce your chances of becoming infected.
- Always use safe drinking water
- Protect yourself from ticks and biting insects
- Keep pets healthy and vaccinated
- Use flea/tick repellant on pets year round
- Vaccinate against preventable illnesses
- Wash hands and surfaces after handling raw food
- Wash your hands after touching animals
- Lonnie Marcum is a licensed physical therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea. Email her at lmarcum [at] lymedisease [dot] org
Protect against tick bites
Try to keep your skin covered as much as possible when you hike. Avoid underbrush as much as you can. Wear light-colored clothes if possible, tick nymphs are generally dark and will show up better on light-colored clothing. Inspect every nook and cranny of your body after a walk in the mountains. The Lyme disease tick is usually a nymph that is about the size of a poppy seed. If one attaches to you do not panic; pull it out with a tweezer do NOT burn it. Put it in a bag and get to a doctor immediately bringing the tick with you so the office can identify it. If caught immediately you need 21 days on doxycycline and you will be unlikely to have any chronic problem.
Caren and Victor’s Lyme Disease Story:
Caren grew up on the East Coast, Victor grew up in the Midwest of the U.S. They were both exposed to ticks in childhood. Caren developed a rash at age 14 while visiting Cape Cod MA, very close to the time and place Lyme was identified (Lyme, CT). She began to develop a weak immune system in the years following the rash. Her immune system crashed at age 30; when her first child was nearly 2 yo. Caren experienced crippling arthritis in her joints and became profoundly disabled at 30 years old. She did not know why she lost the use of her hands, legs and voice sporadically during the following decades; or why she experienced constant searing pain in her nerves and bones over the ensuing years.
Victor gave up full time ministry, his life’s passion, to provide medical care for his beloved wife. When Caren’s health collapsed at age 30, he left the pastorate to provide medical insurance to his wife. Over the next 2 decades they spent at least $500,000. seeking a diagnosis and treatment for Caren’s many difficulties. Victor built a business as a General Contractor. In the year 2000 Victor’s health began to fail. He was his own boss; so he was able to schedule his jobs around his declining health. Both Caren and Victor were given the diagnosis of Fibromyalgia in 2001. This answered some of their concerns, but it became clear over the next decade that there were more questions yet to be answered.
In 2009, Victor was offered an opportunity to minister full time again- his dream profession and heart’s desire. They moved 500 miles away from friends and family to find that the job was no longer available. Caren’s health took a turn for the worse in 2011; she saw a Dr. who tested her (for the 1st time) for Lyme Disease. She tested positive. Victor was then tested with the same result. They embarked upon 3 years of intensive antibiotic treatment which may have helped, but caused far worse complications including a heart attack, Sepsis, Peritonitis and others. Each of them came close to death on several occasions. They have been treated for Lyme and the co-infections of Babesia, Bartonella and Mycoplasma.
Their battle continues. Every day is a challenge. Caren likes to say, “we don’t know how we will make it each month, but somehow some way God manages to provide for our needs.”. Their medical expenses remain high, they live off of one disability check, yet still they manage to give to others through the ministry of Prayers for Pets and other community service endeavors. Caren and Victor believe that God put them on this earth to serve their fellow souls; they do this to their best ability every day as the Lord allows. They appreciate your prayers. (see update of C & V’s story below***)
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Getting a Positive Diagnosis for Lyme:
A clear cut diagnosis for Lyme Disease can be elusive; Lyme hides in the brain and throughout the body. It is very hard to eradicate even when treated immediately because of its ability to hide itself. If you believe that you or a friend could have Lyme based on long standing illness; we recommend getting tested through Igenex Labs, they are the current gold standard; meaning that false negatives are less likely through them. We suggest that if Lyme is a suspected cause of symptoms; it is best to read as much as possible before embarking on treatment. If it is possible to see a Lyme Literate doctor (LLMD), that is also recommended; but a doctor alone is not enough to fight the battle of Chronic Lyme. People who suspect they have Lyme must become researchers and advocate for their own health, but a good LLMD can be an advisor. Lyme is complicated; there is no one fix. If Chronic Lyme is diagnosed it will take many lifestyle adjustments to cope with the disease.
Educate Yourself with these Helpful Resources:
Online Forums (Fora):
Books: Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz helps you understand the complexity of Chronic Lyme in an easily readable format. http://amzn.to/2obtxIF *
Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub, Science Journalist fights the battle of Lyme for her son in rural New York. http://amzn.to/2odcN5G *
Lyme Disease is highly politicized especially in the U.S.; the documentaries below explain the political battle pretty well while documenting particular families struggling with Chronic Lyme (also known as Late Stage Lyme, Post-Lyme Syndrome, Lyme Arthritis and others).
Free Documentary: Under Our Skin (2009) may not work on all browsers
New Updated Under Our Skin 2: Emergence (2015)*
Possibility of a new, more targeted treatment to avoid Chronic Lyme
C & V’s story Update: answer to a friend’s question about how God healed Caren’s voice: June 25, 2018:
<I don’t know if you knew that I sang professionally for close to a decade; we met when I was largely voiceless I think? I was that way (sans voice) for 20 years. From my late teens thru my late twenties I sang professionally at a number of jobs. At one time I sang with the New Mexico Symphony Orchestra and chorus. We did a tour with Dave Brubeck the jazz musician with his cantata written for New Mexico. After I married Victor and became a Christian we joined the Liberated Wailing Wall (singing group) (that may be us pictured in front of the first bus they ever had in ’80) we toured the world and US for a year-and-a-half. I sang my last concert with JfJ the night before I gave birth to Josh. About a decade after that I lost my voice for 20 years to Lyme disease. Just prior to losing my voice I recorded an album with my friend Tammy. You can hear me sing behind Tammy (the soloist) on the high harmonies.
Of course I wasn’t diagnosed with Lyme disease until 2012 (1st bitten in 1970). Both Victor and I have it. We went thru brutal treatment for 5 years; we are hopefully on the other side of that. It has left us depleted in many ways. I did much reading about vocal issues over the two decades when my voice could not be heard above a whisper. It was 2016 when I found an article which actually tied vocal cord paralysis to Lyme disease. I had scheduled about a month ahead to see an ENT to have my voice assessed to see if I could qualify for some kind of help in getting a device to enable me to be heard on the telephone. I had not had a vocal assessment since 2007 when I was told it was basically incurable.
The date of my appointment my voice suddenly got better and I was able to speak and be heard clearly. That would happen from time to time as you may recall; I thought it was just another one of those times. When they looked at my larynx with a scope they said it was perfectly fine. God had completely healed it that morning! The only time I have lost it since that day was when my mom nearly died in December of ’17. That only lasted a day or two. If I trained myself to sing again I probably could but I don’t really care enough to go through the effort! Lol my singing voice defined me for 2/3 of my life, it doesn’t define me anymore. I am now defined as a child of God who is loved by him. That is all the definition I need.
*These Amazon links if used will donate a small amount to the ministry of Prayers for Pets, a tax deductible non-profit organization. You can designate us in the Smile program with Amazon