Living With Lyme Disease Woman Works To Raise Awareness About The Illness
Emmalynn Walvoord, diagnosed a few years ago with Lyme disease, is now fighting to raise awareness about the illness in the state of Nebraska.
Im doing much better, she said. Its been really good.
Walvoord, 21, said her life changed when she was diagnosed with the disease, which doctors say doesnt exist in the state.
is caused by a bacteria transmitted to people through the bite of a tick, according to the U.S. Centers for Disease Control & Prevention.
With the spring season underway and floodwaters still standing in some areas, experts say we could see an uptick in ticks.
Things werent great for Walvoord last year when we first met her. She was always exhausted, she had chest pains, trouble swallowing and memory loss. [
Treatment wasnt easy or accessible because as infectious disease specialist Dr. Mark Rupp said: Lyme disease isnt in Nebraska
We just really havent seen that, he said. We do need to be cognizant and aware. Public health does do studies of what ticks are in our area, and we just havent really seen Lyme disease become of concern.
Walvoord wasnt a patient at Nebraska Medicine her treatment and doctor are hours away, in Minnesota.
Her magnesium levels have plummeted since her diagnosis, and shes hit a road block when it comes to getting her magnesium infusions.
I still cant find a doctor in Nebraska to sign off to help with Lyme disease symptoms, Walvoord said. We are working on it.
Examine gear and pets.
Resources To Find A Lyme Literate Doctor
Now, this wouldnt be a very helpful article if I didnt include resources on how to find a Lyme literate doctor, now would it? Like I said before, it can be tricky to pin down Lyme specialists, so here are a few resources to start your search for a Lyme literate physician.
International Lyme and Associated Diseases Society: Provider Search
Global Lyme Alliance: Find a Lyme Literate Health Care Provider
It goes without saying that these resources are a starting point. If I learned anything from my attempts to find a good doctor, it is the importance of doing your due diligence.
Before committing financial resources, do what you can to conduct a background check on the prospective Lyme specialist. Review their websitehow do they talk about Lyme disease, health, and patient experience? Get a sense of their mentality and approach to medicinedoes it align with what you feel you need out of a doctor? What experience do they have with tick-borne illnesses? What methods of treatment do they use? Most importantly, research patient reviews and look out for any red flags. If possible, sign up for an introductory consultation to see if that doctor may be a good match.
Need Help Finding A Doctor
To Find a Lyme Literate Medical Doctor you can use the following resources:
We also recommend searching for LLMD doctor referrals through online Lyme disease support groups. Connecting with other patients and getting referrals is a wonderful way to find a doctor. In talking with fellow patients and folks walking a similar path of Lyme disease diagnosis and treatment, you will get to know more specifics about your particular doctor, so that you can understand how to best work with him or her. Patient referrals for holistic practitioners are also available through online groups.
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Do Antibiotics Kill Lyme Disease
In acute cases, or when taken prophylactically soon after a bite, antibiotics can be helpful. But Dr. Dane recommends follow-up testing with DNA Connexions and MacTech Imaging. Not everyone bitten by a tick will develop Lyme disease. However, it is becoming more broadly accepted that increased numbers of patients experience treatment failure and end up with long-term, debilitating symptoms. These may include pain, fatigue, and cognitive dysfunction. This is why extra testing is worth the effort.
Long-term antibiotic therapy for treating CLD has negative effects on the immune and venous systems if the antibiotics are given intravenously. But the main disadvantage of this type of treatment is that patients do not get the satisfaction of saying unequivocally that they beat the disease. Even Lyme-literate doctors will say antibiotics help to manage symptoms but do not eliminate the disease. This is true.
Antibiotics place Lyme infections into a dormant state, which of course result in the patient feeling better. The problem is that symptoms return as soon as antibiotics are stopped. Herbals do basically the same thing. The spirochetes go into a cystic formation and cover up with biofilm.
Spirochetes associated with CLD have great anatomical advantage. The way they are built allows them to live easily in viscous areas of the body, such as the mouth. The biofilm that forms over them makes them especially resistant to antibacterial treatments.
Do Your Research And Get Referrals
You can learn a lot just by researching doctors and reading patient reviews online. You can also connect with other patients through local and online support groups for various tick-borne diseases. Asking other patients to recommend or share their own experiences with different doctors can be particularly helpful when youre trying to locate and learn about physicians who specialize in various tick-borne illnesses.
The following sites can connect you to online support-group forums or help you identify different tick-borne support groups in the United States:
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Identify Doctors Trained In The Diagnosis And Treatment Of Tick
You can access a variety of online resources and directories to locate doctors who are specifically trained in identifying and treating tick-borne illnesses. These do not have to be infectious disease specialists they can be physicians from any practice area who simply have extensive experience with tick-borne diseases.
It is particularly important to find a Lyme expert if you suspect that you may have Lyme disease, since it is the most frequently misdiagnosed of all tick-borne diseases. Finding a Lyme-literate medical doctor a physician who is familiar with the vast range of symptoms that may indicate infection at various stages of the disease, as well as potential coinfections and other complexitiescan help ensure that you get the right treatment, right away.
To find a doctor who is also a Lyme expert, you may want to explore the following resources:
Note: Some of these organizations may require you to submit a form or create a login to access their databases.
Strategies For Finding A Good Lyme Doctor
The first thing I did after my Lyme diagnosis was spend as much time and mental energy as I could researching Lyme disease. I needed to understand a little more what treatment options were available and how they compared.
I had a general idea that I wanted to find a good integrative LLMD to help guide me through the treatment process. I wanted a doctor who would take the best that modern medicine has to offer while also understanding what other alternative treatment modalities could bring to the table.
Good luck on your doctor search!
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What Is Lyme Disease
According to theCenters for Disease Control and Prevention, Lyme disease is caused by the bite of a tick carrying the bacterium Borrelia burgdorferi. This bacterium is a spirochete, or one that is twisted spirally. However, while a spirochete is a bacterium, research has shown that B. burgdorferi does not share factors common to many bacterial pathogens. This is why Dr. Dane believes antibiotic therapies are not a cure for chronic Lyme disease.
State And Local Lyme Organizations And Nonprofits
If youre unable to find an LLMD through a national organization, consider doing a web search for a state or local Lyme organization or nonprofit. Some keywords that may generate helpful, search results for you include:
- The name of your state
- Lyme disease
- Nonprofit
For example, typing in Minnesota Lyme disease nonprofit yields the Minnesota Lyme Association , where you can then browse their website for ways to locate a physician or fill out the contact form for more help. These days, most states have some sort of site to distribute information to inquiring patients.
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Treatment Starts With Accurate Diagnosis
The only way to get the proper treatment for your tick-borne disease is to get the right diagnosis in the first place and one of the best ways to do that is, if possible, to see a physician whos experienced with tick-borne diseases. Accurate diagnosis also requires high quality testing at a reputable lab. Learn more about why doctors and patients trust the tests offered by IGeneX.
How To Work With A Doctor Whos Not Lyme Literate
Though the prevalence of Lyme disease is rapidly growing, it remains a lesser known and widely misunderstood disease compared to more commonly seen conditions like cancer and heart disease. So it makes sense that it might take certain circumstances to pave the way for a medical professional to take an interest in treating Lyme disease, especially when symptoms move from being an acute infection to a chronic illness.
In many such cases, doctors who have expertise in Lyme known as Lyme-literate medical doctors have a personal history with the illness, have seen family members or friends try to navigate the complexities of tick-borne infections, or have a medical practice in endemic areas. Typically, you can find an LLMD through online support groups, websites like the International Lyme and Associated Diseases Society , or via word-of-mouth referrals.
Take, for example, Dr. Bill Rawls, Medical Director of RawlsMD. He had a busy practice in obstetrics and gynecology, and his hectic schedule wreaked havoc on his sleep, eating habits, and stress levels. In his late 40s, he began experiencing persistent flu-like symptoms, and for a long time, neither he nor other physicians were able to pinpoint a cause.
After all, with incidences of Lyme on the rise, your doctor is likely to come in contact with more people whove contracted the illness, so working with you as a patient could benefit others like you in the future.
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Addressing The Issues Surrounding Lyme Diseasethe Role Of Lyme Literate Doctors
The combination of issues related to Lyme disease diagnosis and treatment can present obstacles for patientswhether they are living with undiagnosed or properly diagnosed tick-borne infections. As someone who has experienced these obstacles first-hand, I can attest to how detrimental they can be on a patients health and quality of life. I was one of the many people whose disease was initially missed due to inaccurate testing and a lack of understanding and awareness of the issues related to Lyme disease. It wasnt until I was seen by a Lyme literate doctor that the three tick-borne infections that were wreaking havoc on my body were identified. Because Lyme literate doctors arein theoryaware of the misconceptions and controversies discussed above, they can be more able to effectively diagnose and treat tick-borne illnesses.
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A Lyme Literate Doctor:
is familiar with the vast range of signs and symptoms that may indicate Lyme disease at various stages.
Lyme disease is one of the trickiest infectious diseases to diagnose. One reason for this is its non-specific symptoms that mimic those of other diseases, such as:
- Fever and chills
- Fatigue or shortness of breath
- Heart arrhythmia
Misconceptions about what Lyme looks like can complicate the diagnostic process for physicians who dont have sufficient experience with Lyme. For example, many people believe you cant have Lyme disease if you dont have the characteristic bulls eye rash . However, the Centers for Disease Control and Prevention note that this rash only shows up in 70-80% of patients. Dismissing a patient because they dont have the rash can lead to missed or misdiagnosis.
LLMDs have become experts in Lyme disease based on years of experience working with Lyme patients. Many are not infectious disease doctors, but come from a range of backgrounds. By working closely with and treating Lyme patients over the years, they learn to recognize the tricky signs and symptoms of the disease. Some even use that expertise to train other LLMDs.
is familiar with the coinfections that may be present with Lyme.
may be listed on one of the Lyme-literate doctor directories.
has positive reviews or testimonials from other Lyme patients.
is open-minded and willing to listen to your experiences.
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How To Find A Lyme Doctor
One of the biggest frustrations when seeking care for Lyme Disease, or suspected Lyme Disease, is finding a physician able and willing to care for someone whose disease is no longer in the acute, 0-30 days post-tickbite phase. While many doctors are simply not convinced that there are chronic forms of Lyme Disease,there are also many more who simply have no idea where to start when trying to diagnose or treat chronic forms of the disease.
Physicians who are members of ILADS are often much more educated in terms of both diagnosis and treatment. But because there can be professional repercussions for those who are compassionate enough to work with those who suffer from Lyme Disease , it can be difficult to locate these physicians. There are some who have had their licenses to practice taken from them. So understandably, they often they do not publicize the fact that they will treat these patients. Here are a few sources through which you may be able to find physicians in your state who actually know something about Lyme, its treatment and diagnosis. We refer to these physicians and health care providers as Lyme Literate . If you follow the links below, you will find that it is a multi-step process to get a physicians name and you will sometimes have to access your own state-based Lyme Disease Association or Society before getting a name. But this will definitely help you get connected.
This will get you started in your search:
Can You Ever Be Cured Of Lyme Disease
At Bock Integrative Medicine, weve designed a comprehensive model of individualized care that maximizes the chances for a positive clinical response that can restore your health. We use the most recent breakthroughs in medical science and technology to create an evidence-based treatment regimen highly personalized to your needs, including individualized combination therapy treatments that are supported by research. We prioritize your safety, avoiding the use of medications when possible, and combining them with supplements, herbs, and dietary modification to protect your liver and digestive tract when pharmaceuticals, such as antibiotics, are necessary to treat infections. If you want highly trained, experienced and compassionate medical providers dedicated to determining the root cause of your illness, depend on the tick-borne illness experts at Bock Integrative.
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What Doctors Treat Lyme Disease
Lyme disease is a bacterial infection that transmitted to human beings through ticks. Usually, getting this disease means that you will be sick for a very long time. Some people spend their entire lives living with the disease. The good news is that you can treat the disease within two years.
Lyme disease is unlike other common diseases, and getting a good doctor to handle your condition can be a problem. It is actually the reason why so many people end up spending a huge portion of their lives suffering from this disease. Doctors who treat Lyme disease are referred to as Lyme literate medical doctors . So how exactly can you find a doctor who is capable of successfully treating Lyme disease?
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