Suffering from Lyme Disease

My Mom was was diagnosed with Lyme disease when she was 45 years old, after dealing with it for ten years. For ten years she dealt with episodes in her hips, shoulders, spine, toe joints, knees, fingers, shoulder blades, elbows, and wrists.  She remembers telling doctors, “There is something in my body that just keeps going from one joint to another”.  It would ‘attack’ a joint for about 3 months, leave it injured and then move on to another. I remember her telling us “my bones just hurt.” After years of tests and diagnoses, she was finally diagnosed with Lyme disease and rare co-infection, Babesia.

My Mom has been greatly affected physical, emotionally and socially. Physically, she has suffered from joint/bone/neurological pain, brain fog, decreased cognitive skills, extreme fatigue, blurred vision, night sweats, insomnia, numbness/tingling sensation, shooting nerve pain in extremities, iron/manganese deficiency, shortness of breath and secondary infections like Candida. Emotionally, she felt exhausted and discouraged from having no diagnosis, no treatment and enduring constant pain for years. Some people wondered if her symptoms were more mental, and trying to convince people that something was wrong was also mentally debilitating. My mom was also affected socially. She stated that working fulltime and taking care of three children was a full plate. She always worked to maintaine family relationships but she did not have much energy for anything else.

My Mom used many resources and medical professionals to deal with her issues. She met with various doctors from a Family Physician, OBGYN, Rheumatoid Specialist, Autoimmune Specialist, Infectious Disease Specialist, Orthopedic Specialist and Immunologist. She also met with a Holistic doctor to see if following a holistic approach would help. She did this until he too recommended being tested for Lyme disease. She was subjected to X-rays, MRI, bone scans, cat scans, lab tests, hair analysis, fecal tests, blood work and steroid therapy. When nothing seemed to work, she began to read and research these topics extensively on her own. There was only one book written about Lyme in 2008 that she read. She proclaims that there are now at least 10, and much more resources for people suffering with Lyme disease.

My mom was tested for Lyme disease at least 10 times, all with negative results. Other explanations she was given for her symptoms were Chronic Fatigue, MS, Lupus, Connective Tissue Disease, Rheumatoid Arthritis, and Fibromyalgia. In 2009 she discussed Lyme disease with a friend whose daughter had it with similar symptoms. Her friend recommended her to a Lyme literate doctor, Dr. Singleton. Dr. Singleton had Lyme disease himself. Within a month, my mom had a conclusive diagnosis. Dr. Singleton diagnoses her with Lyme disease with a co-infection, Babesia. Babesia is a blood parasite, malaria-like protozoan. Lyme and Babesia are never cured because they hide and reappear in a different form after periods of remission.

My mom was relieved to have a diagnosis, but was shocked that the other Lyme tests came back negative. Dr. Singleton told her that standard blood tests will likely never reveal Lyme disease because it is looking in the wrong blood bands. He used a lab located in California to perform the conclusive blood test by looking in the correct blood bands. Insurance will not pay for these lab tests, so my mom had to spend thousands of personal dollars.

In 2009, she started the 9 month Doxycycline treatment for Lyme disease and Mepron treatment for Babesia, along with vitamin supplements, immune enhancing drugs and diet restrictions.  Three weeks into treatment…the Herx appeared.  A Herx occurs when injured and dead bacteria release their toxins into your blood and tissues faster than your body can detoxify it.  This provokes a sudden exaggerated inflammatory response and the release of many pain-causing cytokines.  Most practitioners warn of it because patients can often think they’re experiencing a severe allergic reaction to the new medication because patients become sicker and symptoms worsen. Practitioners view it as a sign that the medication is working on the correct bacteria. After the 9 month treatment plan, she explains her body remained “quiet” for 5 years, but then symptoms started to reappear.  In 2014, she started the second 4 month round of treatment for Lyme and Babesia enduring 4 months.  The therapy included antibiotics, and vitamin supplements.

 

After learning more about my Mom’s condition and journey for a diagnosis, I did some research of my own on Lyme disease to give her suggestions of how she could maintain her health. In my research I discovered there is a new tick-borne co-infection, called Alpha-Gal that is found in meat. My family eats a lot of deer meat, so I suggest that my mom be aware of this new tick-borne infection and the symptoms she would have if she were to experience this infection. Andrew Nickels, MD of Vanderbilt University Medical Center, states that when someone is bitten with a tick they can develop IgE antibodies that are specific to the alpha-gal allergen that is caused by this new tick-born infection (Smith, 2016). Once this occurs, as it has in my Mom, they are prone to have allergic reactions. If someone eats meat that is infected with Alpha-Gal, the reaction is a delayed anaphylaxis three to six hours after exposure. Common reactions to Alpha-Gal are hives, swelling of the lips, eyes, tongue, and throat, respiratory issues, vomiting, diarrhea, increased heart rate and low blood pressure (Smith, 2016).  At first sing of an allergic reaction, the use of epinephrine auto injectors (EpiPens) is recommended. Depending on the severity of the reaction, emergency care may be needed to administer more epinephrine, antihistamines and steroids (Smith, 2016). I think my mom should be aware of this because having Lyme disease makes her susceptible to this newly discovered tick-born infection and her risk is increased since she consumes a lot of deer meat.

Reference:

Smith, T. (2016, December 21). Allergists say alpha-gal red meat allergy better understood, as numbers continue to increase. Retrieved April 17, 2017, from https://news.vanderbilt.edu/2016/12/21/allergists-say-alpha-gal-red-meat-allergy-better-understood-as-numbers-continue-to-increase/

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