Lyme Disease - The Struggle Is Real

Vanessa Leite Speaks Out

Vanessa Leite and I met for coffee in early March. Her bright smile and strong handshake expressed vigor. She asked if we could sit outside in the shade because sunlight bothered her eyes. I had no idea I was about to converse with a woman who has experienced unthinkable physical challenges. Vanessa’s eyes burn while dealing with flashes and floaters. Her vision is failing. She wears a heart monitor because of an irregular heartbeat and low blood pressure. She faces the need for a pacemaker in the near future. Every day, Vanessa deals with headaches, fatigue, dizzy spells, painful joints and tingling in her extremities. Her nervous system, heart and liver are damaged. At age 40, Vanessa is living with late stage chronic Lyme disease.

Life was going well for Vanessa in the summer of 2009. She was Director of the Irish Cultural Center in Canton, Mass. The building was surrounded by a beautiful 46-acre wooded campus. Vanessa felt fortunate to spend lots of time outside. During the late summer her son had a small tick removed from his ear. It was a deer tick, infamous for the spreading of the bacterium causing Lyme disease. “I never thought about it being a big deal.” Her mom was bitten twice. A rash developed. After a couple of weeks on antibiotics she was fine.

Weeks later, Vanessa came down with flu symptoms that weren’t getting better. She was diagnosed with Lupus. Lyme disease wasn’t considered because she hadn’t developed any rashes. The medicine of choice was steroids. Vanessa’s symptoms got worse. She experienced terrible pain in her joints. The next diagnosis was rheumatoid arthritis. Her health deteriorating, doctors kept pumping Vanessa with steroids. Pain increased particularly in her back. Many days she couldn’t get out of bed.

On March 6, 2012, Vanessa woke to find her left leg paralyzed. A vertebrae disc had fragmented and she needed emergency surgery. Vanessa could not walk for nine months. During the recovery period, Vanessa pondered the situation. Strong faith and a supportive family kept her going. She was determined to figure out what was destroying her body. Vanessa met with several specialists. The gamut of diagnoses included fibromyalgia, shingles and leukemia. Doctors continued to stock her with steroids. “The different types of medicines that I was prescribed could fill two shopping bags.”

Vanessa was now Director of Brockton Day Nursery. She was working 65 hours a week under stressful conditions. In June, 2014, Vanessa lost her vision while sitting at her desk. Her sight returned within 24 hours. After a testing barrage, she was sent home without answers. The list of symptoms grew, including eye flashes, a burning scalp, brutal headaches, heart palpitations and joint pain. Vanessa endured a lumbar puncture and a brain MRI. Amazingly, she was cleared of any serious medical issue.

Vanessa wasn’t giving up but knew a change of strategy was necessary. She prayed a lot. “Maybe it’s the weather,” she thought. In March 2015, Vanessa took a road trip, stopping in Atlanta, Myrtle Beach, Charleston and Hilton Head. The Southeast was appealing, but “I didn’t quite feel the calling of God.” However, she couldn’t get the warm breezes of the South out of her head, so she visited again in May 2015. Vanessa started in Wilmington, NC. Again she ended up driving over a bridge leading to Hilton Head Island. This time she knew it was right and stayed.

Hopes rose when Vanessa connected with a Lyme literate doctor in Beaufort. Tests conducted were conclusive. Vanessa had late stage chronic Lyme disease. The physician prescribed antibiotics. However, problems were far from over. By the time a patient reaches late stage, non-reparable damage has occurred throughout the organs. It may take two years of prescribed medication to get a person to a remissive state. None of the medical costs connected to chronic Lyme disease are covered by insurance. Vanessa has spent thousands of dollars. She was recently turned down for disability and can’t maintain a full-time job. Since July, Vanessa has faced regular visits to the hospital. She has trouble swallowing, her heart palpitations have worsened, and protein levels measuring inflammation levels are off the chart. She had to stop antibiotic treatments because of her failing liver.

Vanessa is one determined woman. She moves forward with a smile. “I am standing in faith that God will not put you through more than you can handle and that I will be healed.” Her parents and son, Marcus, have moved to the Lowcountry for support. She blogs, has joined support groups, and is active in her church. She found alternative methods that alleviate the pain. Presently Vanessa is working with essential oils and Japanese herbs. Her greatest strength is her laser focus on a dream. She said, “I will get better! I will become an advocate for Lymies. I have a big voice, and I plan to use it!”

Editor’s Note: Vanessa never found a tick on herself and never knew she had been bitten.

> 4 types of ticks in South Carolina
• Black Legged Tick (Deer Tick) - Lyme Disease
• American Dog Tick - Rocky Mountain Fever
• Lone Star Tick
• Brown Dog Tick

• Lyme disease is fastest growing vector borne disease in the U.S.
• 300,000 people diagnosed with Lyme Disease each year (96% of cases in New England and upper Midwest
• Diagnosis of Lyme has risen 25 times higher than in 1982
• Since 2001, Lyme Disease cases have tripled in the Carolinas
• Average patient sees 5 doctors over 2 years before diagnosis.
• More prevalent after warm winters.
• Bacteria – Eradicated with antibiotics
> 20% of patients do not respond to antibiotic treatment – Leads to Chronic Lyme Disease.

Within 24 hours—Bulls-eye rash—can grow to diameter of 10 inches. This is only found in 60% of cases.
> After 1-2 weeks
   Stiff neck
   Joint Pain

Types of Disease
            Cases per year in U.S.        Amt spent per patient on research
Malaria                             1750                                    $ 73,000       
West Nile                          5700                                    $ 7,050
HIV/AIDS                          50,000                                 $ 57,960
Lyme Disease                    300,000                               $ 133    

Where: Park Plaza Theater (Sponsored by Lucie Mann)
When: Tuesday, April 5, 2016 (6-8:00 p.m.)
Itinerary: Reception 6-7:00 p.m. (Food supplied by Whole Foods & Burning Down South)
Documentary showing: Under Our Skin: The Untold Story of Lyme
Question & Answer with expert Elise Brady
Booths: Essential Oils (alternative medicine); experts on supplements, care options; other chronic Lyme disease victims
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