About Lyme Disease

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For Lyme Disease Awareness month in May, I posted one fact about Lyme every day to my Facebook account, and I’ve decided to include them in my blog:

Fact 1: Only 1/2 of people bitten (some estimates are even lower) develop the ‘tell-tale’ bulls-eye rash or recall being bitten.

Fact 2: Children are most commonly infected with Lyme Disease, so if you have little ones, please check them each and every time they come in from outdoors. Know where their moles are… Ticks can be the size of a poppyseed and look like a mole (mine did). The CDC says that Lyme Disease is most common among boys aged 5-19. This age group is affected at three times the average rate of all other age groups. Around 25% of all reported cases are children…the infection rate of children is likely much higher- probably because Lyme is frequently misdiagnosed or remains undiagnosed for many years.

Fact 3: Ticks can detect carbon dioxide and heat given off by warm blooded animals/humans. When they detect a host, they drop from trees or latch on from tall grasses.

Fact 4: Ticks secrete a numbing chemical so the host doesn’t feel their hard, stabbing mandibles pierce the skin.

Fact 5: Lyme Disease-carrying ticks have been found in every single state in the US, and on every continent other than Antarctia.

Fact 6: “There are 5 subspecies of Borrelia Burgdorferi (Lyme Disease), over 100 strains in the US alone, and 300 worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete (Lyme Disease bacteria) and its ability to evade the immune system AND antibiotic therapy, leading to chronic infection.” -ILADS

Fact 7: Wearing light colored clothing can make ticks easier to spot, and tucking pants into socks can help protect feet and legs…plus, it looks really sexy!

Fact 8 (which came from my friend Jenny who also suffers from Lyme Disease): Lyme Disease is 6 TIMES more prevalent than AIDS in US. For 2014, the federal government has budgeted $23.2 BILLION for domestic AIDS research, education and programs. For Lyme Disease treatment, prevention and education, the government has budgeted a paltry sum of $9 million. Yes, $9 million to an epidemic that is 6 times more common than AIDS.

Fact 9: If you must use bug spray, apply on clothing and shoes- not directly on skin. Bug sprays are full of toxic chemicals. I prefer using essential oils such as lavender, eucalyptus, and/or rose geranium oils (for tick repellant) mixed with a carrier oil or alcohol…a very safe and effective alternative.

Fact 10: Two primary antibody tests are used to diagnose Lyme Disease, the ELISA and the Western Blot. Doctors almost always order an ELISA to screen for Lyme Disease. Unfortunately, current ELISA tests are not sensitive enough to detect the disease and miss more than half of positive cases (some estimates are as high as 70%)! Because of this, the best antibody test to use for diagnosis is the Western Blot IgG/IgM…a test which most doctors won’t order without a positive ELISA.

Fact 11: Lyme Disease is known as the great imitator and mimics many diseases, often leading to misdiagnosis. Some of these diseases include MS, ALS, Parkinson’s, Fibromyalgia, Chronic Fatigue Syndrome, Alzheimer’s, Bi-polar Disorder, Lupus, ADD/ADHD, Depression, Anxiety, Arthritis, OCD, Autism, Asperger’s, etc.

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Fact 12: Ticks can carry many pathogens other than just Lyme Disease…these are known as co-infections and may include Bartonella Babesia, Rocky Mountain Spotted Fever, Mycoplasma, Ehrlichia, Q-Fever, Powassan Encephalitis, and more. Numerous co-infections can make treatment extremely difficult, costly, and dangerous.

Fact 13: Most Lyme Disease patients experience a symptom flare around a full moon (or new moon). Before I got sick, I always thought this sort of thing was complete nonsense. I was feeling extra sick today, and in the hopes of trying to determine why, I checked to see when the next full moon was- two days from now. I’ve been noticing this for months, and like clockwork, two days before a full moon, my symptoms come back with a vengeance.  This post explains some theories as to why: http://www.tiredoflyme.com/full-moons-and-lyme-disease.html#.U5aLS17oYUt

Fact 14: “The number of Lyme Disease cases reported annually has increased 25-fold since national surveillance began in 1982.” -ILADS

Fact 15: Lyme Disease can stay dormant in the body for years or even decades, until something stressful or traumatic triggers it (a pregnancy, a surgery, a difficult breakup, an accident, the death of a loved one, etc.). As a result of too much stress on the body, the immune system is no longer able to fight the disease and keep it at bay as it once could. Stress or trauma can also trigger a relapse in patients who are in remission or on the road to recovery.

Fact 16: The CDC estimates (often much lower than actual numbers) that there are 34 new Lyme Disease cases per hour in the US, 822 per day, 5,770 per week, and 25,000 per month! Be careful out there!

Fact 17: Lyme Disease and co-infections can be fatal. Lyme can cause carditis (inflammation of the heart), leading to cardiac arrest. It can also cause organ failure, and is multi-systemic, meaning that it can attack the nervous system, endocrine system, respiratory system, etc.

Fact 18: A female tick can lay as many as 3000 eggs.

Fact 19: Lyme Disease is one of the most serious global epidemics of our time, and is more common than AIDS, West Nile Virus, and Avian Flu combined.

Fact 20: The spirochete (Lyme Disease causing bacteria) is highly evolved and has 132 functioning genes (more than any other bacteria I know of, but I’m no scientist). It has the ability to morph into 3 different forms in order to evade the immune system and antibiotics.

Fact 21: Lyme Disease bacteria literally eats away at muscles, causing weight loss and leaving patients extremely weak and bedridden or wheelchair bound, at times. The simplest tasks may become nearly impossible.

Fact 22: One of the most common co-infections associated with Lyme Disease is Bartonella.
Bartonella
Fact 23: One of the symptoms of Lyme Disease is an exaggerated hangover.
Fact 24: Insurance companies will not cover anything to help with the treatment of Late-Stage Lyme Disease patients. They deny the existence of the disease in its later form because they don’t want to pay.
Fact 25: There are 3 stages of Lyme Disease- early localized infection, early disseminated infection, and late disseminated infection. If Lyme Disease is caught early, it is much more treatable than once it has spread throughout the body and brain.
Fact 26: Lyme Disease is an invisible illness, and many victims are not believed by doctors, family, and/or friends. Not only are they left with a life-altering and debilitating illness, but they must also deal with the ignorance of so many…
“Unrelenting pain. Headaches, muscle aches, swollen joints, rashes. Loss of coordination and muscle spasms. Intermittent paralysis. Cycles of disabling symptoms that persist for years, causing ceaseless suffering and frustration for patients and their families. This is the picture of chronic Lyme disease. And yet, many physicians tell their patients there is “no such thing,” referring them to psychiatrists, misdiagnosing them, or even accusing them of fabricating an illness or simply seeking attention.” -Dr. Mercola
thanks

Fact 27: Dr. Burrascano, a very well known Lyme Literate Medical Doctor (LLMD) stated, “Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result.” One dose can kill a Lyme patient.

Fact 28: This is only some of my lovely collection…it doesn’t even include the countless bottles of medications, supplements, tinctures, herbs, injections and various treatment protocols I’ve finished (or forgot to include in this picture)…most of which isn’t covered by insurance!

pills

Fact 29: Lyme Disease can cause severe neurological and cognitive malfunctioning symptoms, speech errors, memory loss, confusion, word block, etc. President George W. Bush suffered from Lyme Disease, but this is not common knowledge. See the comparison of his speaking ability before he became ill vs. after… http://m.youtube.com/watch?v=GpKCoPx9108

Fact 30: Almost 30 countries participated in the Worldwide Lyme Disease protest this year. Millions of people are suffering across the world, without access to proper testing, diagnosis, and treatment, and due to the denial of the disease itself. So many are left to suffer and die because they aren’t able to receive treatment.

Fact 31: Suicide is one of the main causes of death for Lyme Disease patients (although there are many other causes of death that aren’t documented and Lyme isn’t indicated as a factor on the death certificate)…
“I don’t get it, it has all the edge you would think a news story would need. It has denial, corruption, conspiracy, and death. And sadly, many of the deaths are suicides. I have read time and time again that suicide is the #1 cause of death for those that suffer from Lyme Disease. Yet, I can’t find any statistics. Why are there no statistics on this? Why is no one studying this?” http://ireport.cnn.com/docs/DOC-1037462

Just in case those weren’t enough facts for you, here are a few more…

  • Lyme Disease (transmitted through the bite of a tick) is now the fastest growing infectious disease in America (CDC)
  • It can take 10 years or more for someone without initial symptoms or the bulls-eye rash to be diagnosed with Lyme, and by that point, the damage is often irreversible and can be fatal
  • Lyme is an extremely controversial and political disease- one which most doctors know little or nothing about -OR- are too afraid to treat
  • As a result, hundreds of thousands of people remain undiagnosed and are told repeatedly by doctors that ‘it’s all in your head’ as they continue to suffer and deteriorate…or they are misdiagnosed and treated for things they don’t really have- given medication after medication to manage symptoms, without ever identifying the cause of their problems

One HUGE problem is that Lyme testing is extremely faulty. The standard test used to detect Lyme Disease in humans misses most positive Lyme patients- some estimates are as high as 70% of cases that go undetected, but for some reason, the medical community still uses this test (the ELISA). The Western Blot IgG/IgM is a much more accurate test, but insurance will not cover it, and of the 30 some doctors I saw, not one of them recommended it to me. Instead, I had thousands upon thousands of dollars of useless medical tests done, when a simple $250 dollar blood test would have given me all the answers I was looking for.

Furthermore, the diagnostic criteria for Lyme Disease (published by the Infectious Disease Society of America or ISDA) was written by a group of doctors with known conflicts of interests or financial incentives to make the criteria extremely rigid, and is all the CDC will recognize as Lyme Disease. In patients lucky enough to test ‘CDC positive’, insurance will only cover up to a month of antibiotics- not nearly enough to eradicate the disease from the body and brain of someone who has Late Stage/Neurological Lyme disease. Most doctors will not go against ISDA guidelines, so patients are left without insurance coverage or treatment options.

How to properly remove a tick:

Tick GuideProper Tick Removal

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