Kingwood Lyme Support Group grows membership, awareness

March 24, 2017 GMT

Leesa Shanahan pressed play on the phone video documenting her routine of preparing the week’s treatment regimen for her and her children.

The video showed boxes and tabletops full of remedies and supplements, which she divvied up into cups to more efficiently distribute the dosages.

“I just want to show you how a person’s life can be so different,” Shanahan said. “This is what I do once a week. I take out all of these remedies and supplements and pour them into cups for morning, afternoon and evening.”

Shanahan has a message for those who might think living with Lyme disease is easy: “It’s not.”

Shanahan has Lyme disease, as do her children. She connected years ago with Kingwood resident Diane Kahler, whose son suffered through debilitating effects of Lyme disease.

Shanahan and Kahler founded the Kingwood Lyme Support Group in October 2016.

“This is a support group for those who are or who have loved ones who are battling Lyme disease and live in the Kingwood, Texas, area,” Kahler wrote on the Kingwood Lyme Support Group private Facebook page. “The purpose of this group is to have a safe place to ask questions and to share about resources in our area. We are not physicians. We cannot diagnose or prevent a treatment for anyone. We are simply here to support each other on our journey to health and wellness.”

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The Kingwood Lyme Support Group’s first meeting brought in 14 people. The ladies were surprised by the turnout, realizing how big of a need there was for Lyme support in the area.

Now, the group is 54 members strong and growing.

“Every month, there’s someone new that comes in,” Kahler said. “It kind of amazes me.”

The Kingwood Lyme Support Group meets once a month. The meeting dates, times and locations vary, but generally the meetings fall on weekday or Sunday afternoons.

The group not only provides support to people and families dealing with Lyme disease; it also is a forum through which people can educate each other by sharing information.

The Kingwood Lyme Support Group is mostly comprised of Kingwood area residents, but does bring in people from other areas as well. The group has members of all ages and encourages people to bring their family members.

The Kingwood Lyme Support Group’s next meeting is scheduled for March 30 from 12 to 2 p.m. in the Kingwood Library conference room. Guest speaker will be Melisa Rocchi Kuegn of Hilton’s Heartland Natural Health and Wellness Center will discuss her unique approach to chronic illnesses.

Lyme disease results from bacteria transferred primarily by tick bites. Possible symptoms of Lyme disease are vast and can vary from person to person. Common symptoms include fever, muscle aches, fatigue, headache, skin rash and, if left untreated, can lead to more severe and life-threatening health repercussions.

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“Lyme is a painful disease and I think a lot of people don’t realize the pain that people go through,” Kahler said.

Kahler admitted that initially, she did not realize how debilitating Lyme disease really is. She and Shanahan both expressed their appreciation for the effects of Lyme disease increased with knowledge and experience.

Many of the symptoms are not exclusive to Lyme disease and can be misdiagnosed as other conditions.

Before her son was diagnosed, Kahler said his pain was explained away as growing pains, overuse and other more common causes that undermined the severity of the pain her son was actually experiencing.

“My son’s illness was invisible to us until he got so, so sick,” Kahler said. “Now, I’m like, ‘Wow. What an amazing drive you have.’ I would have been in the corner curled up and not moving.”

Kahler said, for her, navigating the path to wellness for her son was a lonely and isolating experience.

“There’s nothing worse than when you see your kid sick and nobody’s there to help you,” Kahler said. “You feel hopeless. Nobody has answers.”

She said doctors can have difficulty diagnosing Lyme disease for several reasons. A bullseye-shaped rash is an early indicator of Lyme disease, but does not develop on everyone.

Additionally, the tests available for detecting Lyme disease can be expensive or produce false negatives.

“We really don’t have a gold-standard Lyme test,” Kahler said. “A lot of people learn about Lyme disease on their own and then go to a doctor and request a test.”

She said a majority of the people in Kingwood Lyme Support Group had to seek out a physician that was Lyme-literate, and knew how to test for Lyme disease.

It is because of Kahler’s difficult experience that she chooses to remain active in the Lyme support community even after her son’s recovery.

“We’ve suffered through this and it can’t go without a purpose,” Kahler said. “We have to share this knowledge. We have to prevent suffering for others. I don’t want my neighbor’s kids to have this. I don’t want a stranger to deal with this. I don’t want anybody to.”

The Kingwood Lyme Support Group is supportive of all treatment choices, which can include antibiotics, holistic and herbal treatments, or a combination.

Both Shanahan and Kahler chose a treatment route for their families’ chronic Lyme disease that is more holistic and homeopathic than antibiotics-based. However, if a person catches Lyme disease early, they said that antibiotics are the best route to take.

“We opted to go with a holistic path for my son because he went into adrenal failure, and we were told that it was a lifetime condition for him,” Kahler said. “He was 14 years old, and I wasn’t willing to accept that. So, we went a different route.”

Kahler, who comes from a medical background, said some of her colleagues disapproved of her decision to treat her son holistically. However, the results of the holistic treatments make her confident that she made the right decision.

“I am grateful God gave me the courage to be able to step outside of my comfort zone and leave Western medicine when Western medicine did not have the answer,” Kahler said. “Western medicine told me ‘This is a lifetime condition. He will always have this for the rest of his life.’

“Does my son have adrenal failure today? No, he does not. He does not have fatigue. He just went to the final four in basketball.”

Because Lyme disease is an invisible illness, Shanahan explained that sometimes people, even loved ones, can underestimate its debilitating effects. However, she said people in the community have been overwhelmingly supportive.

The GoFundMe page, www.gofundme.com/ShanahanFamily, she launched approximately 14 months ago to raise funds for her family’s healthcare costs raised approximately $9,000.

May is Lyme Disease Awareness Month and Kahler and Shanahan are making plans to help build awareness for Lyme Disease.

Kahler is the secretary for the Texas Lyme Disease Association TXLDA.

The association will start the month off with a Rally at the Capitol May 1 at 1:30 p.m. to spread awareness, educate and to advocate for updated reporting criteria on Lyme disease by the Center for Disease Control.

Kahler said there are multiple ways to support the Texas Lyme Association’s awareness building initiatives.

Donations can be made through the Texas Lyme Association website. Donations are used to help educate physicians about Lyme disease and to raise awareness in hopes of people catching their disease as early as possible.

“The earlier people become aware that they have Lyme and start treatment, the better off they’re going to be,” Kahler said.

“Also, anyone who’s looking to volunteer somewhere, think about Texas Lyme Association,” Kahler said. “I feel like we’re kind of on this cutting-edge of this wave of Lyme disease. It is gaining more awareness, but we need people who aren’t sick to help with it. Some that are volunteering are still very much battling their own illness and trying to get well.”

More information about the Texas Lyme Disease Association can be found at https://www.txlda.com/.

For more information about the Kingwood Lyme Support Group, email KingwoodLyme@gmail.com.