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    My Lyme Disease (Mis)Diagnosis

    My early teen years were difficult, to say the least. I know, most people have a pretty hard time! But this has more to do with medical challenges than puberty and stress over what to wear…

    My life from 7th grade, right on through college, was defined by depression, joint disfiguration, fatigue, etc… It’s an important story for me to share because I know millions of you all are dealing with this right now and hopefully it inspires you to Take Back Your Health as well.

    I was 11 years old and about to enter into seventh grade when the symptoms began. Twelve years later, at age 23, I finally found out I have Lyme disease.

    The Misdiagnosis

    Like many Chronic Lyme patients, I lived with the disease for a long time before a proper diagnosis. At the onset of the symptoms, I was misdiagnosed with Systemic Juvenile Rheumatoid Arthritis (JRA), an autoimmune disease that looks very much like Chronic Lyme. It is a very common misdiagnosis. In fact, Lyme disease was discovered in Lyme, CT, where a pair of mothers became curious about the rising incidence of Juvenile Rheumatoid Arthritis (JRA) in their town.

    My Symptoms of Lyme

    Many of the symptoms below developed within the first few months, and persisted for 15 years, causing me to question my ability to pursue a productive life. I was in middle school and high school when I was at my worst – and it was difficult to explain to friends and family – I lost a lot of relationships.

    It’s an odd assortment of symptoms, but so many people that come to me for consultations now show similar symptoms. Chronic infection is exploding and I’ll explain why below…

    Joint swelling, redness, heat and pain
    Joint disfiguration and “bending”
    Headaches
    Brain fog
    Muscle weakness
    Difficulty carrying a conversation
    Slow speech
    Fatigue
    Aches and pains
    Dry, flaky skin
    Plantar fasciitis
    Frequent low-grade fevers in the afternoons and evenings (99 – 100 degrees F)
    Frequent low body temperature in the morning (96-97 degrees F)
    Occasional high fevers (104 degrees F), especially at the onset
    Dandruff
    All-over, pink, splotchy skin rash
    Depression
    Low testosterone
    Low estrogen
    Low progesterone
    Low libido
    Loss of interest in my former passions
    TMJ and teeth grinding
    Sore throats
    Difficulty swallowing at times
    Inability to get enough oxygen – feeling oxygen deprived
    Bouts of very itchy skin
    Stomach pains
    Constipation
    Bloating
    Tongue and mouth sores
    Among others, that I will probably remember later and add to this list…

    Lyme Testing

    At the onset of the symptoms, I was immediately tested for Lyme disease and started on a two week course of antibiotics. However, the test came back two days later as negative and the antibiotics were stopped as ordered by my physician at that time. The test was a Western blot and was not a reliable test for Lyme disease, as we now know.

    Immune Suppression

    I began treatment with a Rheumatologist and went for years under the autoimmune diagnosis. From the beginning, I was prescribed medication for the JRA, which actually suppressed my immune system, allowing the infection to strengthen over the course of over a decade, until I became too sick to attend college. The depression was bad. The fatigue was disabling. The inflammation was tortuous and mind-numbingly painful.

    Signs

    I moved home and continued researching natural methods, this time with a deeper interest and a more intentional outcome than before. I wanted to heal, and I knew that I could. I began seeing signs throughout my daily life that I needed to pursue Lyme testing again. Ticks were showing up all over our pets. Friends were being diagnosed with Lyme. Out of the blue, strangers would tell me about their wonderful Lyme doctors, etc.

    Proper Diagnosis

    After 12 painful years of symptoms, the onset of the Systemic Juvenile Rheumatoid Arthritis was finally attributed to a tick bite. After careful examination of my symptoms, blood work and health history, I was diagnosed with Chronic Lyme disease by three separate doctors and I began appropriate treatment.

    I now know that I was infected with Lyme disease 17 years ago during the summer before 7th grade at summer camp in the Shenandoah Valley of Virginia.

    Cause of Disease

    Now that I have that Lyme disease diagnosis, if I have to label my health challenges, I do so as both Chronic Lyme disease and Systemic Juvenile Rheumatoid Arthritis. I don’t believe that a tick-born infection is the sole cause of my health challenges…

    Robin Shirley Lyme Disease Diagnosis and Treatment

    I suspect that, due to many factors including genetically modified foods, pesticides (including Roundup), heavy metal exposure (through cosmetics, tap water, food and pesticides and vaccines), removal of my tonsils, and nutrient-deficient foods, my body was weakened to the point that my detox pathways no longer worked efficiently and my immune system could not fight or suppress infection as it would have, had it been stronger and healthier.

    All of these “causes” worked together to create a weakened body that succumbed to these two diseases, Chronic Lyme disease, with inflammatory symptoms that doctors call “Systemic Rheumatoid Arthritis”.

    I think that this lifestyle is causing many of us to have weakened immunity, leading to this mysterious grouping of symptoms that have most doctors stumped.

    Your Body is Infinitely Wise

    I want to add an important note. According to western medical doctors, autoimmune disease is when your immune system attacks your own body’s healthy cells. Officially, doctors and textbooks don’t have a reason why some people’s bodies do this. They like to blame it potentially on genetics and say that the immune system is defective, or “wrong”.

    Their treatment plan is to suppress the immune system.

    From the very first day that I heard this explanation from the Rheumatologist, I knew that he was wrong. I knew on a deep level that my immune system wasn’t “defective”. There was nothing wrong with my body.

    Now I’m thrilled to know that I was right. My body does work perfectly. And it is working perfectly to attack the infection that has been buried deep within my cells for almost 2 decades and it is working hard to remove the sick cells that have been damaged by lead, mercury, Roundup, BPA, and other toxins put into the environment.

    Over the last 17 years I’ve come to understand how those things all contribute to the formation of disease, and it is a conversation that I will dive deeper into on the next post.

    My Treatment Plan

    I followed a very particular set of protocols to recover from Lyme, none of which included antibiotics. It will take quite a bit of text to explain everything in the detail that it deserves, so I will save it for the next blog post. I will be publishing that post next week.

    Please stay tuned. I will announce it on my email newsletter and facebook page. You can sign up for my email newsletter in the header of this website, or at the bottom.

    As always, thank you for reading and sharing my posts. Please feel free to ask questions in the comment section below. I’ll do my best to answer and support.

    Keep taking back your health,
    Robin

     

     

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