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Lyme Disease - A Growing Epidemic

Updated on December 11, 2012
Spirochete in my blood seen through Dark Field Microscopy
Spirochete in my blood seen through Dark Field Microscopy

Why it is easier to get than you think and what you can do to prevent it

There is quite a bit of controversy surrounding Lyme Disease, and it doesn't help that it is widely misunderstood due in large part to terribly outdated and inaccurate information that is perpetuated by a long-time conspiracy between the Centers for Disease Control and insurance companies. Because of this, doctors have lost their license for treating Lyme patients and currently there are only a handful of Lyme Literate Doctors in the world. Unfortunately, insurance companies do not cover most treatments for Chronic Lyme patients.

Did you know that Lyme Disease is the number one vector-borne illness in the United States and the fifth most common reported disease to the CDC? There are 20,000 cases a year but it is estimated that the number is grossly under reported so the number is closer to 200,000. Contrary to popular belief, Lyme Disease is prevalent in every state in the U.S. and has been found in every continent in the world except Antartica.

Since being diagnosed with Chronic/Advanced Lyme Disease, I have become somewhat of a tick-borne illness guru, if you will. I have read what seems like hundreds of books, articles and medical journals. I have also researched countless protocols and treatments. Lyme Disease has consumed my life for a year now and the more I learn, the more I am compelled to warn others about this virtually unknown rising epidemic.

Lyme Disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi that is carried by deer ticks as well as other small animals like mice, squirrels, rabbits and birds. Within 24-48 hours of having a tick attached, the bacteria is released in the blood stream and if antibiotics are not taken immediately after the bite, the symptoms and infection is harder, if not impossible to treat. The longer the bacteria is in the body, the more complicated it is to eradicate from the body.

Left untreated, Lyme can produce a wide range of symptoms which makes diagnosis incredibly difficult. Most CLD patients have 50+ symptoms including joint pain, severe fatigue, arthritis, muscle weakness, migraines, confusion/memory loss, vision/hearing problems, sensory issues, severe light and sound sensitivity, heart palpitations, numbness and tingling, trembling, nausea, dizziness and even psychological issues. The pain that Lyme sufferers experience is said to be on the same level as that of patients recovering from a severe car accident. More than half of those diagnosed don't remember seeing a tick or a bite and even though the "bullseye rash" is commonly associated with Lyme Disease, the rash is actually rare in most Chronic Lyme patients.

One of the most important aspects that I have learned about Lyme is that it is often misdiagnosed. Over the years I have been diagnosed with Mono, Fibromyalgia, Chronic Fatigue Syndrome, Lupus, MS, and Bipolar disorder. Because of the wide range of symptoms that manifest in Lyme Disease, doctors that are not educated on Lyme or believe outdated information, will give a person suffering with Lyme symptoms, a non-specific diagnosis like "Fibromyalgia." That term simply means chronic muscle pain and along with "Chronic Fatigue Syndrome" has been the common catch-all diagnosis for those suffering with multiple symtoms. ILADS (International Lyme and Associated Diseases Society) estimates that more than half of those diagnosed with these general types of illnesses probably have Lyme Disease. It has been found that even Parkinsons, Alzheimers, Rheumatoid Arthritis and some mental disorders may really be the result of a tick-borne infection.

One of the reasons Lyme Disease and co-infections are misdiagnosed in the medical community is because the current tests are extremely unreliable. The most common tests for Lyme is the "Western Blot" and the "ELISA" test. Sensitivity to these tests are poor at best. When a Lyme patient is tested based on the anti-bodies in the blood, a false negative will usually result because the spirochete masks the infection. Right now, there is no test that can definitively diagnose Lyme Disease but a clinical diagnostic evaluation by a doctor who is educated on Lyme Disease can be enough to start treatment.

In my case, I went misdiagnosed for so long that when I was finally diagnosed correctly, a round of antibiotics wasn't enough to get rid of this awful bacteria. I have tried natural antibiotics, several different homeopathic remedies, IV treatments and long-term antibiotics. I have found that my symptoms subside when I am on oral antibiotics but the longer I am off of them, the worse my symptoms get. Prolozone Injections have provided some relief from my debilitating joint pain along with diet and natural supplements. Combined with regular courses of antibiotics, my symptoms are much more manageable.

Once it has been in the host for a long period of time, the organism attacks the white blood cells and immune system causing catastrophic dysfunction in the body. Lyme can be resistant to antibiotics because the spirochete can change into cyst and granule form to escape being killed and it evades the immune system by shutting it down almost completely. When treatment is complete, the bacteria will simply morph back into a spiral form and usually symptoms will occur again. Borrelia Burgdorferi can travel through the tissue of its infected host very easily which causes the severe symptoms. Because of its shape, it can go quickly through the blood, tissue, organs and joints and can even break the blood-brain barrier which most infections cannot do. This is probably the cause for the neurological and psychological symptoms.

While I continue to battle this Lyme monster, my goal is to bring awareness and teach Lyme Disease prevention. It is a mistaken belief that you have to be hiking or walking through wooded areas to get ticks. This past summer, while walking my dog in a suburban area, I came back indoors to find several ticks on myself and my dog. Ticks can be anywhere and everywhere because they travel on animals that come in your backyard and common areas. Most Lyme cases are caused from a tick in the "nymph" stage so be aware that they will be tiny and can be easily mistaken for a freckle. In addition to knowing your tick facts, make sure if you are going to camp or hike (even if it is fall or winter) spray bug repellent that contains "Deet" and pull your socks up over your pant legs so that ticks cannot crawl into your clothes. When you get home, it is extremely important to give everyone in the family a thorough "tick check" which includes looking in between toes, near the genitals, in the belly button and behind ears. If a tick is found attached, it is imperative that it is removed properly and saved, in case symptoms develop.

I believe that knowledge is power. If the facts of Lyme Disease are acknowledged by more people and awareness is spread throughout the world, the number of cases will dramatically diminish and this hidden epidemic can be uncovered. There is a better way to fight Lyme Disease and it begins with knowledge and proper awareness. If there is more awareness, maybe the medical community will see the desperate need for more Lyme research. Educate yourself on this mysterious and debilitating disease so that you and your family will never have to suffer it's devastating consequences.


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    • profile image

      DeAnne 3 years ago

      Agreed! Thank you for your comments and encouragement! I appreciate it very much.

    • donotfear profile image

      donotfear 3 years ago from The Boondocks

      On behalf of the Lyme community, I congratulate you for writing this article. I've been a part of this world since 2010, when I was exposed to the bacteria. Fortunately, I was one of the lucky ones that got aggressive treatment early on: 8 weeks after initial infection. I treated for 4.5 months, then hit the parasites with Salt-C. I still have minor lingering symptoms, but for the most part, I'm out of the woods. Keep writing and sharing!

    • RockyMountainMom profile image

      RockyMountainMom 3 years ago from Montana

      I hope you keep writing hubs about this, as you've really hit things on the head here.

      We have overlapping misdiagnoses leading up to Lyme, and we have overlapping objectives in terms of alerting people to the controversy.

      It's sad that people practically have to experience this themselves to have any idea what is really going on.

      This topic is so hard to address because so many myths are prevalent, and they are stated so often (even though science has shown otherwise for decades). It's overwhelming.

      Recent hubs are stating surveillance criteria as diagnostic and claiming a zero perecent false negatives rate, but unfortunately getting a lot of coverage. Very disheartening and so hard to to address.

      I look forward to catching up on your hubs.

    • profile image

      Bambinme 5 years ago

      I totally agree with this article!

    • deadpoets79 profile image

      DeAnne 5 years ago from St. Louis, Missouri

      Thank you for the support!

    • shiningirisheyes profile image

      Shining Irish Eyes 5 years ago from Upstate, New York

      Very important hub highlighting this epidemic. I live in what they refer to as the "Tick Capital of NY State." My upstate NY back yard is full of these dangerous critters. My animals are checked thoroughly after being outside and nine times out of ten, we find a tick. I understand the miserable situation you have endures as many of my family and friends have been afflicted as well.

      It is a serious situation not to be ignored.

    • Paradise7 profile image

      Paradise7 5 years ago from Upstate New York

      Thank you for sharing this important information, and I sincerely hope it helps those at risk.