After Being Misdiagnosed for One Year, it Took Six Years to Recover From Lyme Disease

 

Kris Newby and her husband were unaware that they both had been bitten by ticks while on vacation on a small ”Vineyard” island. An article that appeared recently in Vox highlights Kris’ account of the agonizing six years they spent attempting to recover from chronic Lyme disease.

The Newbys and their two young sons were vacationing in Martha’s Vineyard, Massachusetts in 2002. The tick that bit Kris had buried itself in the back of her head forming a weeping lesion that was surgically removed a year later when they had finally received an accurate diagnosis.

An Early Diagnosis

Tick-borne diseases can be cured with antimicrobial drugs if caught early. However, the ten doctors who were consulted by Kris and her husband over a period of one year were unable to determine the cause of their illness. Several had claimed that it was not Lyme disease, others said it was the flu and one doctor suggested that it was psychosomatic.

The one year delay put Kris and her husband into the chronic disease category. There are currently an estimated one to three million people living with Lyme disease in the United States.

Searching for Answers

Upon their return from Martha’s Vineyard, severe flu-like symptoms began to appear. Kris describes feeling so weak that she had to crawl up the stairs to her bedroom.

Kris and her husband visited their community clinic. Kris suggested to the doctor that they may have Lyme disease. The doctor disagreed and said it was a virus. They returned to the doctor’s office the following week when their symptoms worsened. The doctor referred the Newbys to a specialist in infectious diseases.

The visit to the specialist was brief. Kris explained about the Lyme disease problem on the Vineyard. Kris never found out why the doctor ignored her information and tested for parvovirus.

The Newbys were given a three week supply of iodoquinol that treats intestinal parasites. The drug had a positive effect and gave them relief for the first time since they had returned from vacation.

When the drug supply was exhausted, their symptoms returned and were even more intense. The symptoms included constant brain fog, exhaustion, muscle aches, alternately diarrhea and constipation, and sensitivity to sound or light. Other symptoms affected their ability to write or to read.

Kris was unable to work and shuttered her tech marketing company but her husband had to continue his job as an engineer. Their out-of-pocket medical expenses had risen to $60,000. The couple paid for most of these bills through an equity loan on their home and by depleting their children’s college fund. They desperately needed the health insurance provided by his company.

Kris again called the prescribing doctor begging him to renew the drug. His response was that he was unable to offer a renewal based solely upon a positive response to the drug.

By this time they felt they must face the realization that they might never recover.

It was now ten months since their return from Martha’s Vineyard. They called another doctor.

 An Accurate Diagnosis

The next step for the Newbys was an appointment at an academic medical center. They were tested for various diseases, including a test for Lyme disease.

Every test showed negative results except Kris’ test for Lyme disease. Her husband’s tests were all negative.

Instead of going forward with additional testing, one of the doctors assured Kris and her husband that the chances are almost nil that both of them could be found to have Lyme disease.

Therefore, the couple was sent home with no further testing but not before the doctors suggested that they see a counselor to be treated for depression.

The Road to Recovery

Kris considered the positive test to be a solid lead. A Lyme support group referred her to a doctor who specialized in tick-borne diseases. The Newby’s diagnosis was Lyme disease bacteria with malaria-like Babesia parasites.

Kris refers to this period as the beginning of their recovery. It would take six additional years for a full recovery.

Kris Conducted Her Own Research

As an engineer and a science major, after her diagnosis, Kris began studying Lyme disease. In time Kris had so much data that she was able to produce a documentary. It is titled Under Our Skin. The film includes a segment showing how the financial interests of researchers in vaccines and in test kits can possibly influence their diagnostic recommendations.

Kris also wrote a book called Bitten. In the book, Kris suggests that bioweapons release by an organism was the cause of the initial outbreak of Lyme disease. She writes that this evidence was not included in scientific publications.

That prompts her to ask if a human-engineered microbe that has not been acknowledged could be the cause of confusion in identifying the symptoms experienced by tick-bite patients today.

A Difference of Opinion

According to academic researchers, Lyme disease is easy to treat and to cure.

However, Lyme patients disagree with the researchers and Kris certainly falls in line with that thinking. The patients point to the inaccuracies in testing and in the published list of symptoms. The prescribed antibiotics do not universally cure the disease.

Kris notes that the early cure for Lyme disease is a dose of inexpensive antibiotics. This disincentivizes big pharma. There is no money in curing Lyme disease.

On the other hand, there is considerable profit in treating chronic symptoms of Lyme disease such as depression, pain or inflammation with more expensive blockbuster drugs.

She points to an essay in the Journal of the American Medical Association that declares there had not been a significant increase in Lyme disease cases in the U.S. between 2013 and 2016.

This is contrary to the statistics published by the Centers For Disease Control (CDC) that reports cases in fifty states. Sixty thousand cases of tick-borne illnesses were reported to the CDC in 2017. The CDC scientists say that these numbers capture just a fraction of the number of people stricken by the disease.

About Medical Insurance

Chronic Lyme disease does not have a reimbursement code. The medical insurance companies are being pressured to achieve cost reductions. By avoiding a medical code and labeling Lyme disease as a syndrome instead of a disease, it allows the companies to deny the expense of ongoing care to these seriously ill patients.

In the Foreseeable Future

The CDC has plans to improve the tracking of tick-borne diseases through a surveillance program on a nation-wide basis. Several companies and universities are in the process of expediting diagnostics for all tick-borne diseases.

Kris is dedicated to helping others avoid the delays in diagnosis that she encountered. Her advice is that you may have to be very aggressive to get accurate testing and proper treatment.

She advises doing research prior to the clinic visit and to locate a physician who will approach the testing while being cognizant of the risks associated with tick-borne diseases.

Have you or someone you know been bitten by a tick?

 


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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