Families fight for long-term Lyme treatment

BANGOR, Maine(NEWS CENTER) -- When she was 7-years-old, Sally Jordan started experiencing strange, almost unexplainable symptoms. What used to be easy, like taking a bath and brushing her teeth, was difficult for Sally to do. She had short-term memory loss and pain that seemed to migrate to different parts of her body.

Sally's parents, Lisa and Ralph Jordan, said doctors told her family everything Sally didn't have, but never provided a diagnosis. They spent tens of thousands of dollars and drove hundreds of miles to meet with around 30 specialists.

"The last doctor told her she was crazy and it was all in her head and she needed to volunteer at a soup kitchen to make herself feel better," said Lisa Jordan.

"I'm tired of hearing doctors saying it's just in your head and your crazy and you have this and there is no such thing as Lyme disease," said Sally.

It wasn't until the Jordan family made the five hour trip to New Haven, Connecticut that they finally received some long awaited answers. Eighty-five-year-old, Lyme-treating pediatrician, Dr. Charles Ray Jones diagnosed Sally with post-Lyme disease, a diagnosis that means she has lingering symptoms of Lyme Disease.

Medical experts agree that Lyme Disease is best treated with antibiotics. However, experts in the medial field differ on the prescribed length of antibiotics. The Centers for Disease Control follows the Infectious Disease Society of Americaguidelines, which shows three weeks is enough time for the antibiotics to cure Lyme Disease. Using the same clinical data, InternationalLyme and Associated Diseases Society, an international organization, shows that a longer prescription of antibiotics is often necessary.

Dr. Jones agrees with International Lyme and Associated Diseases Society. He's been investigated by his medical board on how he treats Lyme patients using long term antibiotics.

"If people aren't well then they are not fixed. And we need to treat them until they are well. And that can mean anything from 3 months to 17 years," said Dr. Jones.

Internist and pediatrician, Dr. Beatric Szantryr said the inconsistency between the organization makes it difficult for doctors to develop a standard of care.

"Both use scientific evidence and draw two different conclusions, and that's really tough for people to accept. You look at the same data and draw different conclusions," said Dr.Szantryr.

CDC officials said that long-term antibiotic treatment has been associated with serious complications in medical studies. It also says that patients with post-Lyme almost always get better, but it can take months.

Despite the controversies that surround Dr. Jones and his methods, Lisa and Ralph Jordan stand by him. Sally's sister, Lydia developed similar symptoms and Dr. Jones also diagnosed her with Lyme disease. With his treatment, both have seen significant recovery.

"He saved our girls, not just our girls full of thousands and thousands of people their kids were suffering because they didn't want to live anymore."

Not only that, Sally said Dr. Jones gave her hope and faith when she was at her weakest.

"I got answers of why I was sick and somebody actually read my medical files, believed in me and told me that I was fixable. Without his help I probable wouldn't be here today. I love him, he is my hero," said Sally.

NEWS CENTER reached out to Eastern Maine Medical Center for a response to treating this tick-based disease. EMMC released the following statement which reads in below.

"As Lyme disease has become more common in our region, we believe increased education is a good thing, as it may lead to more people getting appropriate treatment early in the stage of the disease. In treating Lyme disease, EMMC providers carefully consider scientifically-proven information and guidelines developed by experts. EMMC's providers work with our patients to find the right treatment option for each individual. Typically, treatment for patients who have been diagnosed with Lyme disease includes a three to four-week course of antibiotics, which is successful in treating most cases. Treatments for any medical condition, including Lyme disease, are provided at the discretion of each individual physician after an appropriate examination, diagnosis, and discussion with the patient."

Below are additional links to learn more on Lyme disease:

LymeDisease.org

MaineLyme.org


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