May 17, 2022

The Tick Bite That Led Bruce Fries To His Second Wind

The Tick Bite That Led Bruce Fries To His Second Wind

Bruce Fries worked in the computer industry for a long time. But with the nature of his work, he eventually felt burnt out. He realized he wanted to spend time in physical activities, he then worked on farms maintaining fences and feeding horses. Unknowingly, that was the beginning of his biggest second wind.

In 2007, Bruce got a lump the size of a grapefruit on his knee, little did he know it was the beginning of his Lyme journey. Since 2014, he has been an advocate for Lyme patients and now collaborates between stakeholder organizations and federal agencies to advance research on Lyme disease.

In this episode, Bruce shares with us how he chose to use his illness and skills to help other people suffering from Lyme. Acquiring Lyme didn’t feel like a curse for Bruce, instead, it changed his life and brought him to his biggest second wind, to become an advocate and the voice for Lyme patients.

In this episode:

[03:19] How Bruce became an advocate of Lyme Disease and why he considers this as his biggest second wind.

[04:31] In 2007, his knee got a small lump the size of a grapefruit, and he was on crutches for several months.

[05:41] Bruce’s swollen knee would move to his other knee, which is called migratory joint swelling, a common symptom of Lyme Disease.

[06:10] Two years later he got bit again by another tick and he was coinfected with Babesia.

[07:20] In 2013, six years after he had swollen joints, he finally found a doctor who understood tick-borne diseases and was able to get the better.

[08:57] Each person’s symptoms respond differently to Lyme, but common symptoms are flu-like symptoms, migratory joint pain, and unexplained fatigue.

[11:52] Lyme can trigger any type of psychiatric illness or magnify an existing tendency to any psychiatric illness.

[12:32] Six other doctors dismissed the possibility that Bruce had Lyme Disease.

[14:22] Three weeks into getting better, Bruce had a relapse of Combinational Lyme and Babesia. 

[14:45] The big controversy behind Lyme Disease.

[16:42] There are a couple of ways to diagnose Lyme disease. The first is a doctor needs to look at the whole picture and make a clinical judgment.

[17:58] The other way to get counted as a confirmed case of Lyme is to have a positive test according to the CDC criteria.

[20:08] With delayed treatment Lyme can progress and invade your central nervous system. 

[20:56] If the CDC’s criteria or IDSA’s criteria were broadened to reflect the true incidence of Lyme, their patents and vaccine will be worthless.

[21:39] Good news, there is a developing anti-tech vaccine that will protect people from any tick-borne disease.

[23:40] ILADS or International Lyme and Associated Disease Society have a competing set of guidelines that focuses on the individual patient, the clinicians, and the doctors' clinical judgment.

[25:22] A federal antitrust suit against IDSA is in progress and was filed in 2017. Allegedly, IDSA conspired with the largest health insurers in the country and the authors of the guidelines to produce bogus guidelines.

[31:00] Lyme patients as a group are generally dismissed and marginalized by a lot of healthcare providers.

[34:54] some studies show that the CDC endorsed two-tiered tests as part of the IDSA guidelines and shows that in any stage of the disease for all patients, it's less than 50% accurate.

[38:23] Research has shown that Lyme Disease can go dormant.

[39:27] In 2014, while protesting against IDSA, Bruce saw how many women seem to be  impacted by Lyme. He realized that this was his second wind, to help these people suffering from Lyme through his advocacy.

[41:04] Bruce formed his organization, The Patient-Centered Care Advocacy Group which focuses on CDC, filing legal actions.

[42:26] Later on, Bruce realized that instead of going after CDC, he can look into ways to work with them and advance the Lyme Disease research.

[43:43] Bruce met up with Sue Faber of LymeHope, to learn more about congenital Lyme disease, and started a group called Mothers Against Lyme.

[46:16] Sue and Bruce reached out to NIH or the National Institute of Health because they wanted them to conduct themselves or fund external researchers with part of their team included.

[47:43] On December 7, 2020, they had a meeting with NIH. And despite setbacks, this group of young mothers and mother advocates was finally able to work with NIH.

[57:25] Bruce channeled his anger and collaborated with his fellow patients for their advocacy. Channeling his anger and interacting with other people has become his healing process.

[58:37] He is in remission but when he is better, he is out there accomplishing his advocacy.

[01:01:05] Take it one day at a time, there is hope, but we still got a long way to go. - Bruce

About Bruce Fries

Bruce Fries began his work as an advocate for Lyme patients in 2014 by conducting a series of campaigns focused on exposing the harm caused by the IDSA guidelines for Lyme disease. IDSA is the Infectious Disease Society of America. In 2015, he founded the patient-centered care advocacy group to advocate for research policies and funding to improve the federal government's response to the epidemic of Lyme and Lyme-related tick-borne diseases. His current focus is on fostering collaboration between stakeholder organizations and federal agencies to advance research on Lyme disease.

Contact Bruce

On Mothers Against Lyme Website

On Patient-Centered Care Advocacy Group

Join My Second Wind Facebook Group