Durango Mother’s Agonizing Search For a diagnosis Leads to Lyme Disease
https://durangoherald.com/articles/306986?fbclid=IwAR3xF-yYYlpDggNbj-
‘I felt as if I had no purpose,’ Tasha Rayburn says
Tasha Rayburn gave birth nearly a year ago and was embracing life as a new mother when her health started to deteriorate fast – and to make matters worse, no one knew why.
About three weeks after having her first child, Ashaya, the then-25-year-old from Durango started having chest pains and palpitations. She went to the emergency room, thinking it was a heart attack, but MRI and CAT scans came back negative.
To help
Tasha Rayburn and Ryan Bennett have created a GoFundMe page to help cover costs associated with Rayburn’s recovery from Lyme disease. The GoFundMe page can be viewed by visiting GoFundMe.com and searching for “Tasha Rayburn.” A fundraiser will also take place from 6 to 10 p.m. Wednesday at The New Sheridan Hotel in Telluride.
“They sent me home with more medicine thinking it was postpartum depression,” she said.
But her condition only worsened.
Before she got sick, Rayburn was an active member of the Durango community. She worked as an intensive-care unit nurse at Mercy Regional Medical Center and San Juan Regional Medical Center in Farmington, and also served as a sexual assault nurse examiner.
Like many in Durango, she took to the mountains and deserts whenever she could. And, more than anything, she looked forward to being a new mom. Over the ensuing weeks, however, her symptoms ravaged her body and mind.
Previously healthy and active, she now suffered from bouts of anxiety and couldn’t sleep. She said she was in a “brain fog” and was unable to form thoughts or complete sentences. Eventually, she became bedridden and partially paralyzed, and she went to live with her mother in Pagosa Springs.
“I felt as if I had no purpose,” she said. “I was forced to quit my job as a nurse and couldn’t take care of myself, let alone care for my child or truly be a mother.”
And it only got worse: By May, she was experiencing 30 to 40 different ailments – heart pain, headaches, blurry vision, shortness of breath, difficulty swallowing.
Rayburn said she went to Mercy’s emergency room four times and Pagosa Springs Medical Center’s ER twice. She saw multiple specialists, including cardiologists, neurologists, gastroenterologists – all of whom couldn’t find an explanation.
“Eventually, they had written it off as something she was making up in her head,” said Ryan Bennett, Rayburn’s boyfriend.
On top of not knowing what was making her ill, having people not believe her made things that much harder.
“These past few months have literally been a war of all wars,” Rayburn said. “It’s not inaccurate to state that I’ve literally been fighting for my life every second of every day and night.”
In June, however, there came some relief. A friend recommended Rayburn see the naturopathic medical practice of Jennifer Letellier at Be Well Family Medicine in Durango. Letellier quickly recognized Rayburn’s symptoms as those of Lyme disease, which was later confirmed through proper testing.
Letellier did not return calls seeking comment.
Lyme disease is a bacterial infection transmitted by the bite of a tick not thought to be located in Colorado.
“I had even went to an infectious disease specialist at Mercy and brought up the possibility of Lyme,” Rayburn said. “But they said, ‘No, it doesn’t exist in Colorado and there’s no way you have it.’”
But the relief of knowing the cause of her sickness was short-lived. The regimen for treating Lyme disease can be brutal, and Rayburn’s health again worsened.
“I already felt like I was dying, and then, I literally just felt like I was on death’s doorstep,” she said. “When you start killing off Lyme bacteria, they release endotoxins into bloodstream, so typically you will get worse before you get better.”
But Rayburn’s late diagnosis made her case more severe. Bacteria had invaded her brain and spinal fluid, explaining the seizures, paralysis, memory loss and even Bell’s palsy. At times, she couldn’t remember who she was, or who her family was.
Bennett said Rayburn’s mother quickly realized her daughter needed care outside the area, and she found a facility that specializes in Lyme disease at the Sponaugle Wellness Institute in Florida. Rayburn has been receiving full-time treatment from the center since Aug. 5.
“The doctors there – they’ve seen so many of these cases before, but they were definitely surprised my symptoms had progressed so quickly, to such a severe point,” Rayburn said.
Specialists at the facility say Lyme disease could have laid dormant in Rayburn for years, but her body was able to fight it off. When she gave birth, however, it’s likely the disease was able to take hold. And, as an added twist, there was mold at her mother’s house in Pagosa Springs, further weakening her immune system.
It’s anyone’s guess when or where she was bitten, Rayburn said.
Health officials in Colorado maintain Lyme disease does not exist in the state.
A spokeswoman at San Juan Basin Public Health said there have been three cases of the disease in La Plata County in the past 10 years, but that number is likely low because public health case counts are not the same as a clinical diagnoses.
But every so often, patients with Lyme disease say it’s more commonplace in Colorado than previously thought. Since it’s not on doctors’ radar, it’s hurting the chances of detecting the sickness in its early stages.
Billie Shellist, who was diagnosed with Lyme disease in 2013 and is leader of the Lyme Disease Support Group, told CBS4 (Denver) News in 2016 she suffered from many of the same symptoms Rayburn described. But she, too, went years before a proper diagnosis.
“People just don’t really understand what Lyme disease is,” Shellist told CBS4. “I spent five to six years before (being diagnosed) really sick … going to multiple-type practitioners and no one being able to tell me what’s going on with me.”
Rayburn’s treatment consists of a lot of IV infusions, antibiotics and other substances to help fight toxins. Rayburn said she feels like she’s made a 50% to 60% recovery, but there’s still a long way to go – about another two months of treatment.
And costs are creating another major obstacle for the family. Rayburn estimates about $250,000 has been spent since January, and it’s going to take another $100,000 to $150,000 to fully recover. In the U.S., health insurance covers only 28 days of antibiotic treatment.
“People all over the country are going bankrupt treating this disease,” Rayburn said.
The family has created a GoFundMe page to help cover costs. As of Monday afternoon, the effort had raised more than $9,000. A fundraiser will also take place from 6 to 10 p.m. Wednesday at The New Sheridan Hotel in Telluride.
Approaching the one-year mark since giving birth to her first child, and then getting sick, Rayburn said she’s keeping positive, fighting to get healthy again so she can care for her child.
“I was just so grief-stricken, and still am, because I feel like I missed some of the most precious moments of my daughter’s life,” she said.
But there is some silver lining. Rayburn said she hopes her own experience will help educate other people who are sick and may have Lyme disease.
“Since getting ill, there was only an abyss of darkness in my mind as my body was being ravaged,” she said. “I want others who may be suffering to know that they, too, can overcome this with appropriate treatment and resources; and knowing what the problem is, is the first step.”
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**Comment**
These stories are very common. I love how Colorado states emphatically that Lyme disease does not exist in their state. What a bunch of hooey. Lyme is in every state and is worldwide. Until the bird quits flying, and mammals and reptiles quit moving over state lines – it exists everywhere. To say otherwise is admitting complete and utter ignorance. This exact scenario played out in Arkansas: https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/, oh and Mississippi: https://madisonarealymesupportgroup.com/2019/04/22/its-just-crazy-why-is-lyme-disease-treatment-so-difficult-to-find-in-mississippi/, oh and Oklahoma: https://madisonarealymesupportgroup.com/2017/10/24/no-lyme-in-oklahoma-yeah-right/ and pretty much everywhere down South: https://madisonarealymesupportgroup.com/2018/05/31/no-lyme-in-the-south-guess-again/
Notice how many symptoms this poor woman has. The infamous quote by Dr. Jemsek says it all:
“You either have 20 diseases or you have Lyme disease.”
A person should become suspect when symptoms are everywhere within the body and you continue to worsen despite any real help from mainstream medicine.
Doctors who treat this properly are hunted down by state medical boards for treating outside the antiquated and unscientific CDC guidelines of essentially 21 days of doxycycline: https://www.dailykos.com/stories/2012/01/29/1059800/-Wisconsin-Lyme-doctor-gets-reprieve My own doctor had to spend over 50K to protect his practice from this sort of witch hunt.
Currently, there are two opposing sides to this war. The CDC/IDSA has come out with their horrific “guidelines” which if not followed put doctors at risk: https://emedicine.medscape.com/article/330178-treatment#d1
Global Lyme Alliance’s take on it: https://madisonarealymesupportgroup.com/2019/08/15/gla-response-to-proposed-idsa-aan-acr-2019-draft-lyme-disease-guidelines/
Psychiatrist Dr. Bransfield’s take on it: https://madisonarealymesupportgroup.com/2019/09/12/latest-paper-reviewing-the-proposed-idsa-guidelines-on-lyme-disease-and-psychiatric-illnesses/
Dr. Cameron, a respected Lyme literate doctor’s take on it: https://madisonarealymesupportgroup.com/2019/12/13/editorial-newly-proposed-lyme-disease-guidelines-strike-out/
Lyme Disease Organization’s take on it: https://madisonarealymesupportgroup.com/2019/08/18/idsa-guidelines-deny-lyme-diagnosis-to-most-of-the-usa/
Presenting the other side is ILADS (International Lyme and Associated Diseases Society) https://madisonarealymesupportgroup.com/2019/12/17/chronic-lyme-disease-an-evidence-based-definition-by-the-ilads-working-group/
The polarization continues despite science showing the persistence of borrelia, the causative agent of Lyme disease: Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy
