My Lyme Disease Diagnosis Beginning Treatments

Hello my dear sweet blogging friends. I have continued to be away month after month. I have missed you all! I have been extremely sick. After almost 18 years of suffering from illness, that at times has completely blindsided me, I have a name for it.

Lyme Disease.

In the past it has been called Fibromyalgia, thyroid disease, arthritis, pulmonary hypertension, high blood pressure, enlarged heart and even MS. I had a blood test in January to test me for Lyme. It came back glaringly positive. My doctor thinks it is the culprit behind my fibromyalgia, heart problems and more. You can read more about my long and winding journey with “Fibromyalgia, now Lyme Disease” here on my link page to the articles I have written about my Fibromyalgia experience…My Fibromyalgia Journey

I have begun a Lyme treatment protocol for Chronic Lyme Disease. It has been mind boggling thus far. But, I feel that I am on the right road. I just finished Protocol A and now am beginning protocol D.

 There are so many ways to treat Lyme. Every person experiences Lyme in different ways and on different levels. Mine is quite severe. After seeing numerous doctors over the past 18 years, from several rheumatologists, neurologists, cardiologists, internal medicine docs, urologists, orthopedics, Integrative health docs etc. I am glad to know what is at the bottom of  most all of my medical issues.

 I have done extensive research on Chronic Lyme Disease the past several months and I have learned a lot. I have learned that Lyme has no cure, but it can go into remission, which is what I am aiming for. I am hopeful. I have learned that Lyme has many faces, that it can masquerade as many other illnesses…like MS, Thyroid Disorders,  ALS, Lupus and others. It is the great imitator.

I have learned that Lyme is scary. That one day I can have a decent day and the next I will be flat on my back. I have learned to WATCH OUT for full moons (It is a full moon tonight & I am having a difficult time today), they have the power it seems to cause much pain and suffering. (At least in my experience) It has no rhyme or reason. It is hard to treat and even harder to diagnose. I have learned that a tick that bit you many moons ago, can wreak havoc on your immune system almost 20 years later.

May is Lyme Disease Awareness Month.

I wanted to share bits of my story whenever I feel up to it, so that others who may be searching for answers may derive some encouragement from it. So over the next several months, I thought I would chronicle what I am going through as much as I can. Share my symptoms, my successes as well as my failures, whatever they may be. I am fortunate to have a very good doctor and access to some version of care. Some are not as fortunate.

Back in January of this year, I was tested for Lyme Disease.  After scoring very high on the Horowitz Quiz, and having a very low CD57 lab test.  I was encouraged to be tested because of my enduring illness and a history of tick bites. My labs were sent away to Germany and I waited almost 8 weeks to hear the results. On March 13th I got the phone call that my test was positive for Lyme and I would need to begin treatment as soon as possible. I cannot begin to describe the emotions, the thoughts that I experienced when I heard the words, “You have Lyme Disease. Your test was positive.” 
I was angry and relieved at the same time. I was so mad that I had slipped through the cracks of the medical profession for so many years. Angry that it had been allowed to go unchecked for over 18 years or more. So much time wasted. So many days of my life spent feeling vastly unwell and unable to truly function. I was relieved to have an answer, to know that I had a course to plot. Glad that I finally had a “Way Out” of the rut of chronic illness. Little did I realize that there really is no “Way out” just a way of treating it, possibly easing it.  I cried…I breathed a sigh of relief, and then I was apprehensive. I began to read words like herx, protocol, LLMD (Lyme Literate Medical Doctor).  It was a confusing world to suddenly be dropped into. I felt like my world had been turned upside down. I won’t lie it has been one of the most difficult times of my life. Treatment has been very difficult. But I am seeing very small changes. Good changes. It is encouraging. 
In my next post, I thought I would write a little of what I experienced during my first protocol as far as symptoms, and what I have tried thus far. I would love to hear comments from anyone who is going through the experience of Lyme treatment. I am not new to chronic illness, I have been sick for a very long time. But, I am fairly new to Lyme treatments. So I love hearing what others have tried and what may have worked. It helps to know I am not alone in all of this.

6 Responses to My Lyme Disease Diagnosis Beginning Treatments

  1. Henny Penny says:

    Valerie, I am so glad a doctor finally came along who thought to test for Lyme disease. I can't believe how long you have suffered. I hope your treatment work fast and you began to feel good again. My doctor will not test for Lyme disease. He says it is very rare for anyone around here to get Lyme disease…even though Dan and I stay covered in tick bites. Ticks are worse this summer than any before. I have been suffering with back problems and in such pain that I finally went to Urgent Care to be tested for Lyme disease…just to be sure. The test came back negative. Take care. So glad you are being treated for the right thing now!

  2. Hello Valerie, I am so sorry for all of your pain and sickness you have been going through for years! I do hope your treatments will help make you feel better. Take care and hugs.

  3. Valerie says:

    Henny Penny,
    Thank you so much. I would be glad to give you the name of my doctor. He does extensive testing for Lyme. If you are interested, just get Lynn to message me on Facebook and I will give her that information. The Western Blot which is what they generally use around here is widely inaccurate and is known for false negatives. Be careful and stay safe this summer! Ticks are on the move May through July. And this tick season is said to be terrible. I hope you can find some answers. Hugs and Care, Valerie

  4. Valerie says:

    Dear Julie,
    Thank you so very much! I am hopeful for better days soon!

  5. Jan Rose says:

    Oh my goodness you sound so much like. I, too had a very low CD57. Going to so many drs over the years. I can a few good days then feel horrible and I have to stay in bed for several days.

    • ValerieB says:

      Dear Jan Rose,
      I’m like that too, I will have a good day and then a whole string of horrible ones where I have to stay in bed. Maybe one day it will level out.
      Blessings, Valerie

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