10 Things You Need to Know About Lyme Disease…

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10 Things You Need to Know About Lyme Disease

It’s everywhere

Tick borne diseases have been found in every state, every country, and every continent – except Antarctica. Ticks travel so it makes perfect sense that Lyme is not only in one place. Ticks also hitch rides on birds, small animals, etc. and can move geographically this way, as well.

Children are at the highest risk

Children suffer the most from Lyme and co-infections because they are typically more active outdoors and the symptoms can be mistaken for other illnesses. Children go years suffering the devastating consequences as the disease gets worse over time, so they miss out on their childhood before getting an accurate diagnosis. The hardest hit age group is age 5-14.

It’s commonly misdiagnosed

Many tick borne disease researchers and doctors are finding that their patients that have MS, ALS, early on-set Alzheimer’s, Lupus and many other auto immune and incurable diseases are positive for Lyme. Some recent research done with post-mortem ALS and Alzheimer’s sufferers revealed the borrelia (Lyme) bacteria was in their brains and other areas of the body. People around the world are discovering that what they thought was MS and ALS was actually Lyme and their symptoms are alleviated with long term antibiotics.

It feels like you’re dying

One person can have up to 50 painful symptoms that cycle on a weekly basis because of the systemic and cyclical nature of the bacterial disease. The bacteria is spiral shaped and screws in the joints and muscles causing joint pain, migraines, nerve damage, paralysis, eye problems, insomnia and many other symptoms that cause debilitating problems. When the bacteria reproduce and are “active” in the body, it causes flare ups of symptoms that can cause new symptoms or ones that come and go at different times causing a terribly long and frustrating journey to get an accurate diagnosis. Doctors often dismiss Lyme patients as hypochondriacs because of the many “dramatic” complaints of rotating symptoms that “come and go.”

You might not get that “bulls eye” rash

More than 40% of tick borne disease sufferers never had a rash and by the time they were diagnosed it was too late to treat their disease easily. Doctors usually won’t give antibiotics unless you have the rash, but you could still be infected if you were bitten by an infected tick.

Current testing is terribly flawed

This makes diagnosis almost impossible. The current tests most primary care doctors will give for Lyme disease only tests for one particular strain of Lyme and there are over a hundred strains, not to mention the many other tick borne diseases in which testing is not available. The current Lyme blood test only tests for antibodies, not the Lyme bacteria and Lyme supresses the immune system, causing the body to not create antibodies for Lyme. This is very problematic, because if you have Lyme you could test false negative even if you are positive.

Lyme and co-infections can be chronic

Those who seek treatment quickly for tick borne disease have a good chance of recovery but left untreated, it can be a life-long, grueling and costly chronic disease.

If caught late, tick borne diseases can be debilitating and even fatal

Many tick borne diseases can cause great damage to the brain, nervous system, neurological functions and the heart. Lyme carditis can cause heart arrhythmia, palpitations and heart attack.

Tick borne diseases can be sexually transmitted

Entire families suffer from Lyme disease and co-infections that have possibly been passed from husband to wife, (sexually transmitted) and from mother to child, (in utero). The bacteria is very similar in shape and type to the bacteria that causes syphilis, so this could be a reason that it is possible.

Awareness and education is the key to prevention

Do tick checks often – even if you have only been in your back yard. Ticks are everywhere – not just out in the woods. Use DEET and other insect repellent, but also dress for the activity. If you are camping, wear long socks tucked into pants so that ticks can’t crawl under your clothing. Check your pets after walking them so that they aren’t bringing ticks into the house. Talk about it. Let others know how dangerous ticks can be! Spread awareness!

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Lyme in Missouri

I recently wrote the Missouri Health department to inform them that I was CDC positive for Lyme, Babesia, and Bartonella. It’s important for each case to be reported so officials can keep track of what diseases the ticks in Missouri are carrying. This is the letter I wrote:

To Whom It May Concern, 
I thought I should make you aware that I am a CDC positive Lyme case in O’Fallon, MO. I was diagnosed January ’13 and after a year of oral abx with no success, I am now on IV abx for Lyme, Babesia, and Bartonella. I’ve never been to the Northeast and I have lived in STL for over 12 years, born and raised in Dallas, Texas. I was bit in 2003 and the tick was attached for over a week, flu-like symptoms early on and fatigue/joint pain, but I didn’t think of the bite. I started having severe and debilitating problems in 2007 and they continued to get worse over time until I was bedridden. After years of misdiagnosis of MS, Lupus, Fibromyalgia, RA, etc, I finally know what is wrong. Lyme is here. It’s an epidemic. We need to get the word out!

Last spring, while walking in our neighborhood me, my husband, my two little girls and our dog had ticks on us when we got back home. I saved two of the ticks if you are interested in testing them. I want to know what bacteria/disease, if any, the ticks close to my home are carrying. 

Thank you for your time! 

Not only did I get a quick reply, but I had confirmation that little by little the tides are beginning to change. In the very least, Missouri government is acknowledging tick-borne diseases which is not what most Missouri primary care, specialist doctors, and even some veterinarians are telling their patients.

Dear Ms. LeBlanc,

Thank you for taking the time to post your concerns regarding Lyme disease to the Missouri Department of Health and Senior Services (DHSS) web site.  I am sorry to hear about the troubles you have experienced and the dramatic impact on your health. You may not be aware that laboratories’ and physicians’ reporting of tick-borne disease to Missouri public health agencies has almost doubled in the last five years.  As you have suggested, people’s lives can be radically altered due to a tick bite. 

In response, DHSS has partnered with tick-borne disease advocacy groups and local public health agencies to distribute posters, bookmarks, and radio public service announcements targeted at preventing tick bites and increasing awareness of the diseases that can result from a tick bite.  I encourage you to visit our “Ticks Carry Disease Materials Order Form” at the link below if you’d like to obtain any of our materials at no charge: 

http://health.mo.gov/living/healthcondiseases/communicable/tickscarrydisease/orderform.php

To document new cases of Lyme disease, physicians caring for patients with possible infections are asked to provide DHSS with the basic clinical, laboratory, and patient exposure assessments.  Unfortunately, documenting an old infection is more difficult as laboratory assays may not be as sensitive once the acute phase of the disease has past.  With the understanding that Lyme disease testing, diagnosis, and treatment can leave many people frustrated, our best recommendation is one of the oldest tenets governing the relationship between the patient and the care provider – if you have any concerns about your diagnosis or treatment, you should be aware that it is always acceptable for you to obtain a second opinion.

DHSS does not test ticks, but several commercial laboratories advertise on the Internet that they can perform assays for multiple pathogens for a fee.  The presence of bacteria or virus-infected ticks is not always a good predictor of human disease risk, however.  Life-threatening illness from ehrlichiosis, for example, tends to occur more often in older people whose immune systems are not as responsive as they once were.  As with many other kinds of infectious diseases, not everyone who becomes infected with a tick-borne pathogen develops symptoms.

Again, thank you for taking the time to visit the DHSS website.  We wish you the best in your recovery from your condition.

Karen F. Yates, M.Sc.
Vector-Borne Disease Program Coordinator
Office of Veterinary Public Health
Section for Disease Prevention
Missouri Department of Health and Senior Services

Tick borne disease has doubled in the state of Missouri… and that’s not including the cases that aren’t reported or misdiagnosed. It’s probably quadrupled. I know there is a long way to go in the form of research and reform where this politically charged disease is concerned, but I am hopeful that old/false information will finally stop getting perpetuated, despite the fact that there were still some things I disagreed with in this letter, based on my research.

I had an RA specialist tell me just last fall that Lyme did not exist in Missouri, nor did ticks that carry disease. Obviously, I knew this was false information and it worries me that she is probably spreading this info to her patients and possibly giving countless misdiagnosis’ of RA that is really Lyme disease. Not only did she argue about it for 20 minutes, but she belittled me and told me that I didn’t know what I was talking about because “she was the one with the medical degree.” As she left the office, she yelled back at me that she wasn’t going to continue arguing with someone who didn’t know what they were talking about and insisted there was nothing wrong with me.

I really feel like I need to print this quote (taken directly from the Missouri department of health website - Missouri Government Health Services) and glue it on her office door, along with the letter I received from the Missouri GOVERNMENT acknowledging the existence of Lyme and tick-borne infections here. 

“At least six different human tick-borne diseases have been reported in Missouri: Rocky Mountain spotted fever, ehrlichiosis, tularemia, Q-fever, Lyme or a lyme-like disease and the southern tick-associated rash illness. Tick-borne diseases are a type of emerging disease, many of them first recognized in the last 30 years. Human case numbers per year for tick-borne diseases are generally on the rise. This upward trend is due to better recognition and disease reporting, but is also a reflection of changes in the environment that fosters increased exposure and transmission to humans.”

I find it is such a shame that Lyme sufferers not only have to battle their symptoms, their doctors and their insurance companies, but they also have to become advocates for themselves in every way imaginable. I can’t think of an instance besides the AIDS epidemic where a disease was more controversial and those in power treated it with such disgrace. There are too many morally corrupt people pulling the CDC and IDSA’s strings. Patients shouldn’t have to deal with all of this on top of their debilitating disease. It is more than an obstruction of justice, it is a travesty.

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Did You Know? #10

Lyme disease is a “great imitator” and should be considered in the diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, Gulf War syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder, autism, orthostatic hypotension, encephalitis, meningitis and patients with various difficult-to-diagnose multi-system syndromes. (source: www.tbdalliance.org)

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Did You Know? #8

There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme or tick-borne diseases. However, there is a plethora of documentation in US and European medical literature demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete and other tick-borne bacteria.  (source: www.tbdalliance.org)

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Did You Know?#6

Fewer than half of patients with Lyme disease recall any rash. Although the bullseye red rash is considered the classic sign to look for, it is not even the most common dermatologic manifestation of early Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is a clear, unequivocal sign of Lyme disease and requires no further verification prior to starting six weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate. (source: www.tbdalliance.org)

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Did You Know? #4

Ticks do not know geographic boundaries. A person’s county of residence does not accurately reflect their risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for every individual.

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