Health Through Knowledge

The Serano Group



 

Best Estimates…

Disease Prevalence Graphic

These are best estimates of how many people in the U.S. are diagnosed with these conditions.



Lyme borreliosis is under-reported in these counts. (Participate in The Serano Census so we can have better numbers.)


 

What if 10% were Lyme Borreliosis?

Treating doctors tell us that there are no definitive tests or symptoms that differentiate Lyme disease from the other conditions. For example, a multiple sclerosis case can look just like a Lyme disease case. The difference is there are fairly effective treatments for Lyme disease.


 

What If 20% were L. Borreliosis?

We spoke with Senator Ron Wyden (D - Oregon) who already knew a great deal about Lyme disease. He asked, "How many of you are there?" Our Census will answer that question.


 

More Than Lyme Disease

Beginnings

We began as a group concerned about how U.S. medicine was handling Lyme disease, expecting changes through innovative, quality science. Soon, we realized that scientific research is but a small part of the picture. The predominant issue is lack of information and open discussion in many health care areas, not just limited to Lyme disease. A complex web of commercial, academic, and governmental agencies controls open exchange of facts, ideas, and discussion that promotes overall health benefits. We soon decided that yet one more disease-focused group, competing with many of others for resources, was not the answer. Improving Lyme borreliosis medical care is not solvable as an isolated issue and our focus could not be solely on Oregon, Washington, or even the Pacific Northwest.

Potential

Fixing the problems of U.S. health care is going to take time. The present, immediate neglect and mismanagement of Lyme borreliosis is a correctable problem with potential for timely improvement. In the process of improving diagnosis and treatment of Lyme borreliosis, meaningful contributions will improvie overall health care.

The Census

Our immediate priority is to count people who have been properly diagnosed and treated for persisting infections or syndromes. If you or anyone you know has had Lyme borreliosis, or if you think you might have Lyme borreliosis, we need you to be counted. We have created an online survey that can be completed in about twenty minutes. You pick the level of privacy you want—from complete anonymity to permission to disclose as appropriate and beneficial. Any and all information will be used solely for research, analysis, and education. You are invited to learn more or request an invitation to participate.

Each response is vitally important to improving the current Lyme borreliosis situations. The census survey is designed to accommodate everyone, whether they have Lyme borreliosis or not. It is especially important that those who have received treatment for borreliosis and improved take the survey. We intend to publish results in the most visible and respected media possible. If traditional channels are hesitant or reluctant to publish, we are experienced in publishing in alternative channels which might include online channels or outside standard medical journals.


Borreliosis and Coinfections

Borreliosis, which includes the infection commonly called Lyme disease, is often accompanied by coinfections. These additional infections include

  • Babesiosis
  • Anaplasmosis (formerly ehlichiosis)
  • Bartonella infections
Coinfections complicate the diagnosis and treatment of borreliosis and require treatments for controlling infections in the appropriate sequence. Because there is a great deal of symptom overlap, it is often difficult to tell which infectious agents are causing which symptoms.


Action

Information and analysis become crucially important when they are used for change. Here are some goals we want to help work toward:

     
  • Protecting medical professionals’ right to practice effective medicine
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  • Promoting a healthy environment to keep us well
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  • Determining who among us may have treatable infections
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  • Counting those made better with treatment
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  • Encouraging our neighbors to be their own health advocates
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  • Mitigating disease cost shifting to individual patients

 

What You Can Do

Here is what you can do next:

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