Chronic Lyme Patients Embrace Alternative Treatments Rack Up Big Bills
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Crystal Pauley, a former physician assistant, didnt believe in so-called chronic Lyme disease until she became sick.
Many health care providers reject chronic Lyme disease as a diagnosis. One 2010 survey found that just six out of 285 primary care doctors surveyed in Connecticut an epicenter for the tick-borne infection believed that symptoms of Lyme disease persist after treatment or in the absence of a positive Lyme test.
When Pauley worked for the La Crosse, Wisconsin-based Gundersen Health System, she remembered hearing about a friend from high school battling chronic Lyme in Australia. But she had her doubts. Im working in the medical field, she said. Weve never learned about that.
Years later, Pauley has changed her mind. Pauley tested positive for Lyme in 2020. She suffers from unrelenting fatigue, joint pain and brain fog. She walks up stairs sideways because of the unbearable knee pain. Pauley said she has become pseudo-Lyme literate because of her own personal journey.
Their symptoms are always real. Theyre experiencing them, said Dr. Joyce Sanchez, an infectious-disease associate professor at the Medical College of Wisconsin who treats Lyme patients with persistent symptoms.
The Most Accurate Lyme Disease Test
Many of the patients we see have already been tested and told they didnt have Lyme disease but continued to suffer from classic Lyme symptoms.
When we re-test these individuals with our extremely sensitive Lyme test, almost all cases are confirmed to be infected with Lyme. This is due to the sensitivity of the Lyme test we use.
Is There An Effective Treatment For Lyme Disease
Dr. Dane was introduced to a new treatment for Lyme disease in 2017. It was not an antibiotic, nor was it an herbal remedy. It was a mineral compound produced in liquid form that could be turned into a gaseous state and nebulized. The product essentially acts as a fumigator and blasts the body with a blend of minerals that kills the spirochetes and improves immune function. Skeptical at first, Dr. Dane tracked eight patients over the course of a year that she had treated for the neurological effects of Lyme disease. Much to her amazement, seven of those patients were clear of Lyme just over a year later. Symptom relief varied from completely gone to 50% better. However, some effects of CLD cannot be reversed.
The mineral product is called Lyme-N, and, like many aspects of Lyme disease, its effectiveness is controversial. But this is the only treatment Dr. Dane has seen eradicate the spirochetes associated with CLD.
Dr. Dane has witnessed many patients put their trust in her after becoming frustrated with more traditional Lyme disease treatments at other medical facilities. The Carolina Brain Centers way of treating patients is built upon the tenets of functional neurology, which use a combination of medical technology and brain therapy to produce healing where possible and the easing of symptoms in other cases.
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The History Of Lyme Disease Has A Wisconsin Chapter Its Still Being Written
If someone is having physical symptoms and isnt feeling listened to, then theyll have mental health repercussions and then that will impact their physical well-being, she said. And then its a spiral that if you dont address both components of health, youre not going to make much progress on either side. And they will continue to feel sick.
Wisconsin Watch talked with five Wisconsin patients, all women, who have been searching for validation and experimenting with personalized treatments as part of a long and sometimes grueling battle with the illness. The infection comes from tiny ticks primarily found in the northeastern United States, including in Wisconsin which is a hot spot for Lyme, ranking No. 5 among states for Lyme cases in 2019.
One of the five tested positive for Lyme using a two-step testing recommended by the U.S. Centers for Disease Control and Prevention. Three others tested positive using a test not recommended by the CDC. The fifth woman was diagnosed as possibly suffering from the disease by a Lyme-literate practitioner.
A Rich Persons Disease
Since chronic Lyme is not a recognized disease, its difficult to get insurance coverage, so patients are usually stuck paying out of pocket for treatment.
Pauley, who lives in Woodstock, Illinois, is still searching for affordable treatments.
Her dementia-like symptoms made it impossible to continue working as a veterinary assistant, and she quit her veterinary clinic job in 2020. Previously, she had quit her physician assistant job in La Crosse and moved back to Illinois.
It was hard, she said. I went from the middle-upper class to the poverty line.
She went to see a Lyme-literate doctor in Milwaukee in August, when she was also suspected to have Bartonella. Pauley was charged $525 per hour for the initial consultation fee, not counting testing fees and supplements. She was irritated to hear the doctor refer to it as a rich persons disease.
Its hard to understand any doctors that charge like Beverly Hills lifestyle out in the Midwest, she said. Were not celebrities, and I dont get paid 30 million per film.
Stevens said her average costs out of pocket range from $25,000 to $50,000 a year. It was a huge strain on us, she said. This is why a lot of people cant get better, because they cant afford it.
Cashman knows the financial burdens chronic Lyme patients bear, too.
Although all five women interviewed by Wisconsin Watch have tried unconventional treatments, they say they are skeptical about anyone who claims their chronic illness can be cured quickly.
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Lyme Disease And Tick
Lyme disease patients have difficulty finding doctors with experience treating Lyme disease. For the past 25 years, LymeDisease.org has been connecting patients with Lyme-literate practitioners who specialize in caring for patients with Lyme disease.
We are happy to connect you with your nearest Lyme literate practitioners contact information. Please note, however, we are not privy to the status on each individual offices payment/insurance practices or if they are accepting new patients, with that said, we do encourage you to use the information available to contact the offices directly.
The Reality Of Lyme Disease
Lying in a hospital bed at Aurora Medical Center, John Bush, 17, had an empty stomach with a bag of saline next to him, waiting for his colonoscopy.
He looked at his mom, Laura Bush, who seemed to be hiding her worry as they waited.
A series of health problems stomach pains, stiff muscles, extreme flu-like symptoms, bloody feces and losing 20 pounds had him in that hospital room.
An hour before the procedure, the doctor entered the prep room.
The blood test we took showed you do have Lyme, he said. READ MORE.
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What Are The Best Tests For Lyme Disease
At the Carolina Brain Center, we recommend two tests. One is DNA Connexions, a urine test. The other is MacTech Imaging, a saliva test.
The DNA Connexions test identifies co-infections common to Lyme disease. MacTech Imaging picks up where the DNA Connexions test leaves off by giving doctors an idea of a patients overall microbial load. Each saliva sample is scanned for spirochetes and then given a graded score.
These two unique tests allow us to proceed confidently with treatment. Post-treatment analysis informs doctors as to whether a patient is clear.
Call Ahead And Ask Questions
Even if you find a doctor who specializes in treating tick-borne diseases, you will want to ask some questions before making an appointment and committing your time and money. A few basic questions to consider asking upfront include the following:
- What is your experience in treating patients with tick-borne diseases?
- How do you diagnose diseases? Do you use any specific labs or lab tests to confirm diagnosis?
- Do you test for coinfections?
- Do you use traditional antibiotics and/or herbals?
- Do you have any patient success stories you can share?
- Do you strictly adhere to CDC test interpretation criteria or are you open to alternative criteria?
If youd like to find a LLMD and want to know more about how to vet them, read the Tick Talk blog, What Makes a Doctor Lyme Literate?
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Going Down ‘rabbit Holes’
Often, chronic Lyme patients present multiple symptoms that make their diagnosis challenging. They bounce from one specialist to another to tackle each problem, but each diagnosis cannot explain all of the symptoms they are experiencing.
Cashman underwent an MRI because of her severe pelvic pain, and the results found two deflating ovarian cysts which can cause severe pain in the lower abdomen. But that diagnosis did not explain the unbearable pain that gravitated to her knees and to her head. She recalled that the swollen knee “got red hot to touch,” and she developed a fever. Cashman began to look for causes. “Not everything is Lyme, but everything can be ,” she said. “Its a weird thing, but you got to go down these rabbit holes.”
Croteau saw specialists, including emergency physicians, a cardiologist, a kidney specialist and an immunologist. All the tests she took were negative for Lyme disease. She was told the problems may be related to psychological issues.
“So basically, its been a timeline of two years of not being taken seriously, just pushed away either told I cant do anything for you theres nothing really wrong with you,” Croteau said.
A medical provider suggested that she seek counseling and increase her dose of anti-anxiety medicine. But the pain in her joints and wrists were real, and her knuckles often got swollen. The brain fog made it hard for her to punch in a phone number correctly.
Push: Experiences Within Conventional Canadian Health Care
All participants had first sought assistance for their health-care concerns within the CCHS before turning to other options. The participants described negative experiences within the CCHS including perceived misdiagnoses, failure to obtain a diagnosis or improvement in symptoms, often after years of multiple specialist consultations , and insufficient or delayed antibiotic treatment drugs to treat my symptoms, but because of the political climate surrounding Lyme disease, he refused to prescribe conventional antibiotics).
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The Little Bite Cost Me Quite A Lot Says Hawthorn Hollow Naturalist
A tick clung to Nancy Carlsons hip after a workday spent outside in 2013.
It wasnt abnormal.
I pull ticks off all the time, its not a big deal, Nancy Carlson, a naturalist at Hawthorn Hollow Nature Sanctuary and Arboretum on Green Bay Road, said.
She was taught as a naturalist that a bulls-eye rash should raise concern about contracting Lyme disease. When she was bitten, it never appeared. READ MORE.
Top Lyme Clinic The Us
Long considered one of the top Lyme Disease clinics in the nation, LifeWorks Wellness Center regularly sees patients from around the world who are desperately seeking a resolution to this debilitating condition.
If you have been to other doctors and you feel like you are not being properly diagnosed or youre still suffering from strange symptoms despite testing and treatment, you owe it to yourself and your family to come to our clinic and be evaluated by one of the top Lyme disease experts in the world.
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Beginning Lyme Treatment Tip: Just Start Somewhere
One evening, I was feeling particularly down. I needed to decide what to do. Each week, day-by-day, I seemed to feel worse and worse. I needed to decide, but I felt paralyzed for fear that Id make the wrong decision.
I was chatting with a dear friend from college who has been battling Lyme disease. She wisely encouraged me, Literally, start somewhere. It doesnt matter where. Switch if youre not happy.
That was it. That was what I needed to hear about beginning Lyme treatment. Just start somewhere. And that is what I did.
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‘a Rich Person’s Disease’
Since chronic Lyme is not a recognized disease, it’s difficult to get insurance coverage, so patients are usually stuck paying out of pocket for treatment.
Pauley, who lives in Woodstock, Illinois, is still searching for affordable treatments. Her dementia-like symptoms made it impossible to continue working as a veterinary assistant, and she quit her veterinary clinic job in 2020. Previously, she had quit her physician assistant job in La Crosse and moved back to Illinois.
“It was hard,” she said. “I went from the middle-upper class to the poverty line.”
She went to see a Lyme-literate doctor in Milwaukee in August, when she was also suspected to have Bartonella. Pauley was charged $525 per hour for the initial consultation fee, not counting testing fees and supplements. She was irritated to hear the doctor refer to it as “a rich person’s disease.”
“It’s hard to understand any doctors that charge like Beverly Hills lifestyle out in the Midwest,” she said. “We’re not celebrities, and I don’t get paid 30 million per film.”
Stevens said her average costs out of pocket range from $25,000 to $50,000 a year. “It was a huge strain on us,” she said. “This is why a lot of people can’t get better, because they can’t afford it.”
Cashman knows the financial burdens chronic Lyme patients bear, too.
Although all five women interviewed by Wisconsin Watch have tried unconventional treatments, they say they are skeptical about anyone who claims their chronic illness can be cured quickly.
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Going Down Rabbit Holes
Often, chronic Lyme patients present multiple symptoms that make their diagnosis challenging. They bounce from one specialist to another to tackle each problem, but each diagnosis cannot explain all of the symptoms they are experiencing.
Cashman underwent an MRI because of her severe pelvic pain, and the results found two deflating ovarian cysts which can cause severe pain in the lower abdomen. But that diagnosis did not explain the unbearable pain that gravitated to her knees and to her head. She recalled that the swollen knee got red hot to touch, and she developed a fever.Cashman began to look for causes. Not everything is Lyme, but everything can be , she said. Its a weird thing, but you got to go down these rabbit holes.
Croteau saw specialists, including emergency physicians, a cardiologist, a kidney specialist and an immunologist. All the tests she took were negative for Lyme disease. She was told the problems may be related to psychological issues.
So basically, its been a timeline of two years of not being taken seriously, just pushed away either told I cant do anything for you theres nothing really wrong with you, Croteau said.
A medical provider suggested that she seek counseling and increase her dose of anti-anxiety medicine. But the pain in her joints and wrists were real, and her knuckles often got swollen. The brain fog made it hard for her to punch in a phone number correctly.
How To Approach Your Non
For various reasons, you may choose to consult with a doctor who doesnt specialize in Lyme disease or other tick-borne diseases.
If so, be sure to be as proactive as possible in providing information that could help in diagnosing your disease, and always feel free to share resources that you find in your own research to prompt discussions about any aspect of your diagnosis or treatment, including more advanced testing options.
If your doctor does not believe Lyme disease exists, reach out to another doctor for a second opinion.
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Our Treatment Success Stories
âI am incredibly grateful for Dr. Fong and the entire team at Sierra Integrative Medical Center for helping me get my life back. After 10 years of searching for answers, and being dismissed by countless doctors, Dr. Fong took the time to really review my story and was the first doctor to see me, believe me, and help me get a diagnosis. Dr. Fong showed me that you CAN get better and have symptom free days again! Thank you, Dr. Fong, for everything!â
– Christa Nannos, Author of Tick Tock, Itâs LYME Oâclock
“The Doctors are western trained and practice alternative medicine, so I feel like we have the best of both worlds here. I would definitely encourage anyone to checkout the clinic because it has given us hope where we’d had none before.”
– LaJean, Lyme Disease Patients Mother
“It’s a great clinic. I really appreciate the perspective of the treatment. Dr. Fong is an internal medicine specialist, he’s focused on causes. With us he was able to go through and identify every single thing that is compromising the function of our immune system. I noticed a big improvement having the detox treatment… By the time we left a year ago there was a real sense of a depth of energy.”
– Seth, Lyme Disease Patient
– Danella C., Lyme Disease Patient
Lyme Disease In Wisconsin
Lyme disease in Wisconsin is a growing problem. When winters are warmer, the tick population increases, creating more risk. The Wisconsin Department of Health reports that there were 38,000 cases reported in the state between 1980 and 2015. We treat many people in our region for this disease at our functional medicine clinic near Milwaukee.
Lyme disease is transmitted to humans by infected black legged or deer ticks. The ticks get the disease from biting infected animals. Lyme disease in Wisconsin and the rest of the country is usually caused by Borrelia burgdorferi, a bacterial spirochete. In 2013, health department officials noted that a rare species of bacteria, Borrelia mayonii, was also causing some infections.
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