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Post-Lyme Disease Syndrome, Where Antibiotics End

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If you or someone you know has Lyme Disease, or extended health problems because of Lyme Disease, the information contained in this article may help them restore their health back to normal.  

While experts don’t understand it, roughly 10% of people treated for Lyme infection do not shake the disease. 

They may go on to have three core symptoms — joint or muscle pain, fatigue, and short-term memory loss or mental confusion.

This is called post-treatment Lyme disease syndrome.

It’s considered controversial because its symptoms are shared with other diseases and there isn’t a blood test to diagnose it, Aucott says.

A recent CDC study found that cases of Lyme increased more than 80% between 2004 and 2016.

What are the stages of Lyme infection?

There are three stages:

*Early localized Lyme: Flu-like symptoms such as fever, chills, headache, swollen lymph nodes, sore throat, and typically a rash that has a “bull’s-eye” appearance or is uniformly round and red and at least 5 centimeters in size

*Early disseminated Lyme: Flu-like symptoms that now include pain, weakness or numbness in the arms and legs, vision changes, heart palpitations and chest pain, a rash, and facial paralysis (Bell’s palsy)

*Late disseminated Lyme: This can occur weeks, months, or years after the tick bite. Symptoms might include arthritis, severe fatigue and headaches, vertigo, sleep disturbances, and mental confusion.

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There are theories as to why Lyme symptoms become chronic. One is that the body continues fighting the infection long after the bacteria are gone, much like an autoimmune disorder.

Symptoms vary among the different diseases, but they may include fever or chills, body aches, headaches, rashes, and nausea. These symptoms can occur in a person years after they were bitten.

Most people with Lyme who are treated right away with three weeks of antibiotics have a good prognosis.

But if you’re not treated for weeks, months, or even years after infection, Lyme becomes more difficult to treat. Within days of the bite, the bacteria can move to your central nervous system, muscles and joints, eyes, and heart (67).

Lyme is sometimes divided into three categories: acute, early disseminated, and late disseminated. But the progression of the disease can vary by individual, and not all people go through each stage (8Trusted Source).

Every individual reacts to the Lyme bacteria differently. You may have some or all of these symptoms. Your symptoms may also vary in severity. Lyme is a multi-system disease.

Lyme is the fifth most reported of notifiable diseases in the United States, with an estimated 329,000 new cases found annually (4Trusted Source). But in some states, estimates suggest that Lyme disease is profoundly underreported (4Trusted Source). Some studies estimate that there are as many as 1 million cases of Lyme in the United States every year (5).

Often misdiagnosed and mistreated, chronic Lyme disease leaves thousands of people physically and mentally debilitated and without a medically established recourse.

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What is post-treatment Lyme disease (PTLD)?

Most people diagnosed with Lyme do very well after taking a prescribed course of antibiotics. They can go on with their lives, and they never have any long-term complications. 

However, doctors noticed a subset of patients who develop symptoms that can last for months and even years after treatment. PTLD symptoms are vague and other illnesses present in a similar way: fatigue, brain fog, numbness, tingling, palpitations, dizziness, aches, and pain. 

There are a few case studies in the medical literature describing people who continued to have evidence of infection despite adequate treatment, but in most cases there is no laboratory proof the bacteria is still present.

Conventional medicine has a hard time treating something we cannot see or isolate. However, we cannot ignore that people’s lives changed after the diagnosis of Lyme disease. 

Their suffering is real. And the frustration is widespread. 

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On one side, we have distressed patients tired with the lack of answers; on the other side, we have doctors who cannot find a biological proof of what is happening. 

Finally, we have an economic system where insurance companies regulate payment concerning how we diagnose and treat diseases. Physicians typically must see a patient every 15 to 20 minutes and find solutions that fit their goals, with little time to listen and address vague complaints.

Lyme disease is the poster child for the disconnect we have in our current healthcare system. This scenario led a group of patients and clinicians to get together to seek solutions for this problem.

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But now there is hope for those people who continue to suffer from Lyme Disease after conventional antibiotics have failed them.

Which bring us to Stephanie Vostry, 25 who appeared on the Dr Phil show to share her Lyme Disease Nightmare and the Alternative treatment that has given her back her life.

“Lyme disease has ruined my life, 100 percent,” says former model Stephanie Vostry, 25.

“I first started getting sick right after a camping trip about five years ago, and I had the flu for an entire year.

I kept going to doctors, and they thought I was just crazy.” Stephanie says she suffers from constant pain and fatigue, extreme arthritis and seizures. 

Dr. Phil notes that some people refer to chronic Lyme disease as an epidemic.

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HHS Working Group on Lyme and Other Tickborne Diseases: Emerging Issues in Tickborne Disease 6/13/19

Denise Bonilla, USDA/APHIS-Update on the Asian longhorned tick (H. longicornis) .Dr. William Nicholson, CDC-Alpha-gal allergy following tick bite: What do we really know? .Dr. Kevin Esvelt, MIT-Mice against ticks: A community-guided effort to prevent Lyme disease via gene editing .Dr. Ben Beard, CDC-National Strategy for vector-borne diseases.

Reported Cases of Lyme Disease – United States, 2017

U.S. map showing reported cases of Lyme Disease at a county-wide level for 2017. Cases are concentrated in the north east
 

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