Living With Lyme (Part 1): What you May Not Know About Lyme Disease

By Mary Ann Filler

Just a little over a year ago, I thought that a person infected with Lyme Disease presented with a bull’s eye rash that could easily be treated and cured with a round or two of Doxycycline. My perception of Lyme changed in December of 2011 when I was diagnosed with the disease.

After educating myself about Lyme Disease, I realize that my symptoms began and progressed over a 6-year period prior to my diagnosis. My symptoms included knife like headaches, vision disturbances, dental issues, sinus infections, chronic bronchitis, a heart arrhythmia, neck and back pain, hip pain and chronic fatigue. About three years prior, I had a blood test that apparently ruled out Lyme. I now know that the blood test is not very accurate and that Lyme Disease is a clinical diagnosis.

A month prior to my diagnosis, I knew that something was desperately wrong. Every muscle in my body was firing, and I had extreme joint pain that traveled from one joint to another. It was like having the flu, fibromyalgia, chronic fatigue and arthritis at the same time.

I went to my general practitioner and he ordered a lot of blood work including a Lyme test.  This time, my Lyme test was positive.  That meant that at some point I was bitten by a tick (ticks are the main vector) and infected with the Lyme bacteria,  B. burgdorferi.

Unfortunately, when my blood test was negative all those years ago, it never occurred to me to look any further in to the disease.  However, after diagnosis I began to diligently research and read anything I could find relating to Lyme disease and treatment.

What did I discover?

 LYME DISEASE IS A POLITICAL DISEASE

The Centers for Disease Control (CDC) does not even recognize the existence of Chronic Lyme Disease and the Infectious Disease Society of America (IDSA) is in agreement.  However, the International Lyme and Associated Disease Society (ILADS) validates those of us who are suffering with the chronic form of Lyme Disease.  As a result of the discrepancies in beliefs between the CDC, IDSA and ILADS, many medical doctors are not aware of how late stage Lyme can manifest in a patient’s body.

I have read accounts of people spending hundreds of thousands of dollars on expensive and inconclusive diagnostic procedures only to be dismissed by their medical doctor and referred for psychiatric help.

THE BULL’S EYE RASH IS PRIMA FACIE EVIDENCE OF LYME INFECTION

Well-informed doctors will treat patients who present with a bull’s eye rash, erythema migrans, without waiting for a blood test confirmation.  Unfortunately, less than 50% of people recall either a tick bite or a rash.  In addition, while the bull’s eye rash is considered classic, atypical forms of rashes are actually more common with Lyme Disease.

Years ago, I had an oval-shaped raised red rash that took quite a while to clear up.  I remember looking at it and thinking that it wasn’t a bull’s eye shape; I dismissed it as a spider bite.

Credit: Wikimedia Commons

One version of a bull’s eye rash – Credit: Wikimedia Commons

THERE IS NO ACCURATE DIAGNOSTIC BLOOD TEST FOR LYME DISEASE

 The current standard for diagnosing Lyme Disease involves a 2-tier blood test.  The first test administered is a screening test called the ELISA.  The second tier test, the Western Blot, is only performed if the first test is positive and is used by many medical professionals as a confirmation of diagnosis.

According to ILADS, the ELISA screening test is unreliable.  The test misses 35% of culture proven Lyme Disease.  The Western Blot, is also inaccurate as 20-30% with acute culture-proven Lyme Disease will test negative.  In addition, the longer a person has been ill, the less likely they are to test positive as the antibodies that we produce as a result of having Lyme Disease decline over time.

Lyme Disease should be diagnosed clinically!

TREATMENT PROTOCOLS FOR LYME VARY GREATLY

 Once diagnosed, getting treatment for Lyme Disease presents another problem.  Since the CDC does not recognize the existence of Chronic Lyme Disease, some doctors will give a few weeks to a month of antibiotics and claim that a person is cured. Perhaps if the disease is caught in the early stages, this may be true.  However, for those of us who have a later stage of the disease, a couple of weeks to a month of antibiotics will not provide much relief.

The treatment protocols for Lyme are as numbered as the symptoms that manifest in each person.  “Lymies” and their advocates must decide the best treatment protocol on an individual basis.  Treatment is not a one size fits all process, and in many cases patients must go “off the beaten” path to find help.

LYME DISEASE IS ALMOST ALWAYS ACCOMPANIED BY ADDITIONAL TICK BORNE DISEASES

I had never heard of Babesia, Bartonella or Ehrlichia prior to my Lyme diagnosis.  These bacteria, also known as co-infectors, are found in critically ill individuals who also suffer from B. burgdorferi, the Lyme bacteria.  These co-infectors may be responsible for persistent and chronic cases of Lyme.

Credit: istockphoto.com

Warmer weather on its way… Credit: istockphoto.com

As we approach the warmer months of the year, we will all be spending more time outside.  For my next few blog posts, I would like to address issues relating to Lyme Disease.  My hope is that you will educate yourself about this potentially devastating disease, not only for your own benefit, but for your family and friends. There is no question that early diagnosis and treatment is much more effective than the treatment for the chronic stage of the disease!

Do you know anyone who has or suspects they have Lyme Disease?  Please share your thoughts and experiences!

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5 thoughts on “Living With Lyme (Part 1): What you May Not Know About Lyme Disease

  1. Hi Judy, I would recommend sending an email request to this address: medicalinfo@tbdalliance.org. The “tbd” in the email address stands for tick borne disease. The tick borne disease alliance has a website that has a ton of great information. The reason that you can’t just “google” doctors that are Lyme literate (LLD) is that most do not want their information on the internet. Also, LLD are not a one size fits all either. If you don’t like what one doctor tells you, find another. Best wishes!

  2. Thank you so much, Mary Ann, for bringing to light what has become a real problem. I am so sorry you have had to suffer with this, and I can appreciate the difficulty in having to research and stay on top of your medical care. Hopefully, the more education people have about preventative measures the better chance they have of avoiding this disease.

  3. Pingback: Living With Lyme (Part 2): Preventing Tick Bites | Off the Merry-Go-Round

  4. I had a similar experience…sick for about 2 1/2 years with double vision, muscle and joint pain, fatigue, …misdiagnosed only to end up in the ER with severe neck and head pain…sent home with a “migraine” and then after researching my symptoms online insisted my Dr. Test me for Lyme. My test was positive he prescribed 30 days doxycycline. Felt better at first then all my symptoms came back. My Dr. Says I should be cured and doesn’t want to hear about it anymore! All the specialists no longer take insurance…therefore I can not afford the thousands of $ for treatment…I really don’t know where to go from here! They need to do something about this so many people are sick, I guess I will try some herbal treatment until my financial situation improves! Good luck to, if there is anything you find works for you please let me know!

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