A Discussion about Lyme and Emerging Tick Related Illnesses via Twitter

The Amazing Benefits of Networking on Twitter

About a year ago I discovered Twitter. Initially, I was following the Stars on the VOICE & attempting to keep up with politics. However, in order to maintain my sanity, I have since abandoned politics.  Almost by accident I discovered a huge number of my favorite medical writers and contributors to Magazines, Journals and News Papers were all on twitter. It didn't take long for me to build a network of other interesting and intelligent individuals from all over the World who I enjoy following.

Below is a perfect example of the amazing benefits of networking on twitter.  Last year I met Dr. Judy Stone, an infectious disease doctor and accomplished writer who has helped educate me on infectious diseases, and connect me into the twitter-sphere.

Thoughts on Living With a Disability

Other than the few weeks following my C-section, I've never been disabled. My perspective on disability comes from my best friend becoming a paraplegic when we were in High School, living with a child with a chronic illness, providing physical therapy to many patients with varied diagnoses, and one special lady that changed my perspective on life many years ago. 

Over the years, I've treated 1000's of patients, and one thing seems to stand out in those who do better-It's a sense of optimism. One of the biggest frustrations with Chronic Fatigue, Myalgic Encephalomyelitis or Fibromyalgia is not knowing the cause. I do believe we are on the verge of discovering biomarkers for these illnesses, but currently there is no definitive blood test or imaging technique to tell us the cause of your illness. Many CFS/ME patients go years without help but it's important never to give up hope. This feeling, that things will get better, seems to be the driving force in so many of my patients. 

10 Tips for Managing Chronic Pain at Home

10 Tips for Managing Chronic Pain at Home: 

(Advice from a Physical Therapist and Mother of Child with Lyme, ME/CFS & POTS)

Defining Pain
Most Chronic pain suffers hate rating their pain, but health care providers need to know. Sometimes we refer to the "Pain Assessment" as the 5th Vital Sign (after Temperature, Pulse, Respiratory rate, and Blood pressure). When we're treating you for pain, your rating is the only way we can gage whether a patient is making progress or not. It's more difficult when trying to quantify how much pain a child is in. I find the Visual Analog Scale (VAS) works better than telling someone to "rate your pain on a scale of 0-10."

Emerging Science In Lyme Disease Testing:

There is some promising news on the horizon for Lyme Disease. Several new tests have been developed within the past year that I will highlight here. (P.S. I will be adding to this page as new information emerges, so please check back)

Lyme is caused by an infection of the Borrelia spirochete (phylum Spirochetaete) and is the most common vector-borne infectious disease in the United States. With over 300,000 Americans being infected annually, Lyme presents a serious public health concern. Unfortunately, the current testing for Lyme does not account for the wide genetic variability or the multiple variant forms of Borrelia. In addition, the level of spirochetes in the blood can run so low that they may be undetectable at the time of testing.

A Negative Lyme Test Does't Exclude the Diagnosis of Borreliosis

Lyme disease, caused by the Borrelia Burgdorferi spirochete, is the most common vector borne disease in the United States. There is considerable debate regarding the accuracy of current testing for Lyme Diseaes.

Obtaining a positive confirmation for Lyme is hampered by several factors:

1. Antibodies against Borrelia burgdorferi [Bb] are slow to develop (1-4 weeks for early antibodies (IgM) & 4-6 weeks or more for mature antibodies (IgG)); 
2. Co-infection with other spirochetes can yield false positives; 
3. Co-infection with certain viruses can yield false negatives;
4. Co-infection with other tick-borne disease can yield false negatives;
5. Immunosupression (lack of antibodies) can yield false positives; 
6. Immunoblots (a test that looks for antibodies) are subject to human interpretation and error;
7. No single Enzyme Immunoassay Test (EIA) currently exists to detect all 21 strains of Borrelia; 
8. Early antibiotic use can yield false negatives;
9. Many doctors don't know the reason's for false negative tests, and fail to repeat them.

Four Stages of Lyme Disease: Borrelia burgdorferi

Lyme Disease is a vector borne illness caused by Borrelia Burgdorferi(Bb) a spirochete which is passed on to humans primarily by infected ticks. There are 21 known species of Borrelia and 3 genotypes of B.burgdorferi.  Ticks are small arachnids and can carry numerous bacteria, viruses and protozoa such as Rickettsia, Bartonella, Ehrlichia chaffeensis, and Babesia. The tick has a two year life cycle, going from larva to nymph to adult, requiring blood at each stage. Many bites occur during the nymph phase. The typical nymph is about the size of a poppy seed.

The Long Road to a Lyme Diagnosis

In August 2012, my daughter became critically ill. What we thought was the flu, progressed to a point where she could no longer function physically or mentally.

At the time of her illness my daughter was a straight "A" honors student and playing Water Polo. She was doing 360 sit-ups, 20 pushups and swimming for 2-4 hours every day. One day she came home from school with a flu like symptoms and a fever. After a week of her progressively getting worse, I started taking her to the doctor on a Bi-weekly basis. By the second month of her illness she could barely walk. She'd gone from Geometry/Algebra to not being able to do simple addition/subtraction. She had a laundry list of symptoms: Constant migraine type headache, extreme insomnia, extreme light sensitivity, sound sensitivity, neck/back pain, muscle/joint pain, jaw pain, extreme foot pain, extreme fatigue, shortness of breath, nausea, abdominal pain, low blood pressure, lightheadedness, as well as a recurring low grade fever that was accompanied by a diffuse rash. Later she developed reddish/purple striated marks on her back, her legs/feet would remain bluish & cold most of the time and her blood pressure would hover in the 70:50 range making her completely intolerant of any activity.  Her memory which was once sharp as a tac had disappeared. She wasn't able to walk more than ten feet without starting to black-out. School had become virtually impossible.