Madison Area Lyme Support Group

By Kris Newby, Invisible International

It’s easy to dwell on the negative with Lyme disease. Forty-seven years after discovery of the first case cluster in Lyme, Connecticut, there are still no reliable tests or effective vaccines on the market. Among those patients who are treated promptly, about a third go on to suffer from persistent symptoms.

But it’s important to keep things in perspective. Incremental progress is being made, albeit slowly. There’s a growing acknowledgment of the magnitude of the Lyme problem in the medical system, the government, and the media.

New diagnostics, vaccines, and therapeutics are finally working their way out of basic research labs and into clinical validation studies. Invisible’s mission is to accelerate progress on all these fronts.

Here are 10 signs of progress for the Lyme disease community:

The CDC ups annual Lyme disease cases to 476,000

After analyzing medical insurance claims data on Lyme disease in 2021, the U.S. Centers for Disease Control and Prevention upped their public-facing estimate of 300,000 annual cases to 476,000 per year. “Our results underscore the need for accurate diagnosis and improved prevention,” says the CDC. This updated estimate provides a larger “market size” that may incentivize commercial interests to develop better diagnostics, vaccines, and therapeutics.

New WHO ICD-11 Lyme disease diagnostics codes

The World Health Organization (WHO) added 15 new medical diagnostic codes for Lyme disease (aka borreliosis) complications, effective on January 1, 2022. Over time, these codes will provide patients with more avenues for medical insurance reimbursement and will enable researchers to better track and analyze Lyme disease complications, treatments, and outcomes. On the international front, the European Union is now requiring mandatory reporting of neuroborreliosis, a move that will help with research funding, prevention, and disease tracking.

More patient participation in the U.S. research agenda

Patients’ voices are starting to be heard. Since 2017, patient advocates in the HHS Tick-Borne Disease Working Group  have been effective in educating Congress and researchers on the urgent need for better diagnostics and treatments.

MyLymeData, a patient information database managed by LymeDisease.org, has quantified time-to-diagnosis, common symptoms, and treatment outcomes, providing a big-data window into the needs of patients.

Lastly, the Center for Lyme Action, founded in 2019, organized educational sessions within the US federal government to facilitate the passage of a new appropriations bill that nearly doubled the federal funding for Lyme disease to $108M in FY21.

Strong evidence of active Lyme infections after treatment

A recent spate of research studies show that Lyme disease symptoms can persist after recommended treatment protocols, challenging the widely held belief that Lyme disease can always be cured with a short course of antibiotics.

Acknowledgement that chronic Lyme is a real medical condition is the first step in justifying the development of more effective treatments for both early and late stages of the disease. A summary of this evidence can be found in here.

Recognition of the dangers of mixed tick-borne infections

When several university labs started gene sequencing and cataloging all the disease-causing microbes inside ticks, they discovered that polymicrobial infections transmitted through a single tick bite are far more common than previously thought.

In the U.S., there are at least 18 disease-causing bacteria and viruses carried by ticks. And new studies have found that the standard U.S. Lyme testing doesn’t detect the newly recognized Lyme-like bacterial species spreading in the West and Midwest.

This new information is another reason to design better screening tests and treatment guidelines for mixed tick-borne diseases. Read more here, here, and here.

Invisible International’s free medical ed courses on tick/vector-borne diseases

Invisible International’s physician education platform is the world’s first accredited curriculum focused on tick- and vector-borne diseases. These virtual courses are available at no cost for medical professionals and patients. Taught by leading experts in tick/vector-borne diseases, this platform is accelerating the movement of the latest diagnostics and treatment advice to the front lines of medical care.

New courses are added monthly and are accredited by the American Academy of Family Physicians for AMA credit. This effort is funded by the Montecalvo Family Foundation. To help Invisible integrate these courses into medical school curriculums across the U.S. and abroad, click here.

New therapeutic/treatment options on the horizon

A relatively new technology called “high throughput drug screening” enables researchers to place Lyme bacteria in an array of tiny wells and expose them to thousands of FDA-approved chemical compounds and drugs to see which ones are best at killing the microbes. The best and safest drug candidates are then retested in live mice, and, eventually, in humans. This process saves the time and money associated with large human clinical trials and speeds up the regulatory approval process.

The LymeX Diagnostics Challenge

The weak link in reducing the public health burden of tick-borne illnesses is the lack of fast, cheap, and accurate diagnostics. Lyme treatment is often delayed because the screening tests aren’t reliable in the first month after infection and not everyone produces or notices a bull’s-eye rash.

In the later stages of the disease, antibody testing can be unreliable in the sickest patients, those whose antibody production may be hobbled by concurrent infections or a weak immune system.

LymeX, a public-private partnership, will be offering prizes to incentivize the development of better Lyme diagnostics. The effort is funded with $25 million from the Steven & Alexandra Cohen Foundation and co-managed with the U.S. Department of Health and Human Services (HHS).

Invisible is joining the effort to support new diagnostic development by organizing a “Tick-borne Illness Diagnostics Development Incubator” in parallel, a yearlong collaborative forum designed to help bring these diagnostics solutions to the market faster. This effort is funded by the Lovell Family Healthcare Foundation.

Studies revealing the suicide/mental health risks of Lyme and co-infections

In a large retrospective study of nearly 7 million subjects, U.S. and Danish researchers report that patients who received a hospital diagnosis of Lyme disease—inpatient, outpatient, or at the ER—had a 28 percent higher rate of mental disorders and were twice as likely to have attempted suicide post-infection, compared to individuals without the diagnosis.

Studies like these show that undertreated Lyme disease can lead to serious mental illness, and that it should be a differential diagnosis for certain patients with sudden-onset depression, suicidal thoughts, and other mental disorders. Read more here, here, and here.

A breakthrough in public awareness of the tick-borne disease problem

A growing number of mainstream journalists, writers, and professionals have gone public with their personal stories on the emotional, financial, and societal toll of tick-borne illnesses. This is an essential step in mitigating the social stigma, medical gaslighting, and myth that Lyme disease is easy to diagnose, treat, and cure.

Notable new additions to this genre include “Chronic,” “The Invisible Kingdom,” “The Deep Places,” “What Lurks in the Woods,” and “Bitten” (my book). Invisible’s “Storytelling for Change” initiative aims to continue this momentum with a team of clinicians, researchers, and writers collaborating to produce mass media stories that explain emerging science and promote understanding of the suffering and social injustices laid on families dealing with invisible illness.

Kris Newby is Communications Director of Invisible International, a 501(c)(3) nonprofit foundation dedicated to reducing suffering from invisible illnesses.

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**Comment**

Normally a positive, forward looking person – I would like to offer the following in response to these “signs of progress”.  BTW: this is not being negative, it’s being realistic.

1. The ONLY reason the CDC ups Lyme numbers is due to ‘vaccine’ development which is a huge cash cow for them as they own patents on many vaccines. When they bring a disease into the lime-light (pun intended) it’s always for a monetary reason – not because they are concerned about patients. The CDC lies, and releases and withholds data for its own vested purposes. Even mainstream doctors state the CDC has abandoned science & public health is broken. In a huge overreach of power, a FOIA request showed the CDC tracked millions of phones (using tax-payer money) to see if Americans followed COVID lockdown orders, but also for non-COVID related programs. CDC twisted logic reiterates travel mask advice despite a court ruling and its own data. (Hopefully it is abundantly clear the CDC is not our friend)
2. The WHO is also completely corrupt.  They too only advance certain diseases due to financial interests.
   1. Please read this article on how Gates has been buying the controlling interest in the WHO for over a decade through the Gates Foundation, as well as other organizations and enterprises he funds. His new book outlines the need for a firefighter-like pandemic task force named “global epidemic response and mobilization,” or GERM, that would be a part of the WHO and could stop outbreaks of disease from spreading.  According to Keean Bexte, writing for The Counter Signal reports:  Bill Gates has announced the creation of a pandemic “GERM” team that will monitor sovereign nations and decide when they need to suspend people’s civil liberties, force them to wear masks, and close borders.  If you believe for one second that the WHO is concerned about Lyme/MSIDS patients, you are sadly mistaken.  Further, present U.S. health care is completely controlled by by The Cares Act which is behind the Fauci Death Protocol currently being used in hospitals. Many falsely blame capitalism, but it is a form of facism called corporatism – when corporations and government merge. Our government no longer watch dogs anything. They are players – actively pursuing business ventures and making money off of severely sick people. This leaked video from “Breaking Points with Krystal and Saagar” in March, 2022, shows a Representative explaining that the most powerful committees in Congress must be bought at a price of $1 million or more. The money comes from lobbyists who pay the price in exchange for political favors.  National media is completely aware of this and both political parties are guilty of doing it. Go here for more.
3. While patient participation in research can be helpful, it will never be taken seriously by the research community & therefore the medical profession.  As it stands, case studies aren’t taken seriously either, which is one of the main reasons why Lymeland continues to stagnate.  Fauci, emperor of NIAID and the coffer- keeper of government grant money, only acknowledges large, randomized, controlled trials (RCTs) – except when it suits his personal purpose.  What he says is the rule of law and scientists know they must take a knee to the emperor to get precious grant money.  Fauci sits on the Leadership Council of the Bill and Melinda Gates’ Global Vaccine Action Plan board which is a collaboration between WHO, UNICEF, NIAID, and the Gates Foundation.
4. There has been strong evidence of borrelia (and many other pathogens) persistence for decades.  It hasn’t mattered.  I’m currently reading “Ending Plague, A Scholar’s Obligation in an Age of Corruption.” In it, scientist Francis Ruscetti states the government will go to any length to defend one of their own.  If they defended Gallo’s completely unethical behavior during the AIDS debacle, they will defend Fauci to the bitter end.  Fauci et al. do not believe or want borrelia persistence, therefore it shall never be – despite the evidence.  We must work outside the system to get help we desperately need.  I don’t believe this will ever change.
5. Despite some recognition of polymicrobial infections (Lyme and company), nothing has changed.  “Official” testing continues to abysmally look for one organism and official treatment only treats one organism for a very short time.  Further, due to ‘vaccine’ development, which is the most lucrative scientific venture, therefore highly sought after and valued above all else, current research will continue to fixate on the one germ, one cure and will continue to lead the charge despite new findings.  If this officially changes I will eat my hat.
6. Free medical ed courses for Lyme/MSIDS are not new and Invisible International is not the only place offering accredited curriculum or CME.  The fact Invisible International is unaware of this demonstrates it is not well known or used yet. Free Lyme CMEs have been in the works for a while now.  Results remain unknown at this point. The AMA, FDA and other large, professional medical and public heath groups/agencies are bullies and are completely in bed with Big Pharma.  They have a long history of monopolizing medicine and shouting down dissenters.
7. From where I sit, the only new therapies and treatments are coming from LLMD’s and researchers who are working independently and are funded independently. This is an important distinction.  The government has been using Lyme/MSIDS patients for far too long as cogs to raise money for government research that only cripples them.  We will be far better off giving our precious pennies to independent groups with open minds and ethics.  Doing research with the government is truly crawling in bed with the enemy – and then paying them for it!
8. Testing has been a problem forever and will continue to be a problem for multiple reasons. The first one of course is that antibodies are often not produced at various stages of the illness (or in sufficient amounts to be picked up). The second one is the arbitrary cut-off points and the fact ‘officials’ took out the most specific band in testing due to ‘vaccine’ development. The third would be the polymicrobial nature of the disease, not to mention the fact the organisms are pleomorphic and one step ahead of testing and the immunity system at all points in the game.  Please note that LymeX, is a public-private partnership, that will be offering prizes to incentivize finding better tests.  Here’s the problem: prizes don’t mean much when your discovery ends your career, which is exactly what happens to those who cross emperor Fauci. Just ask Judy Mikovitz and many, many others.
9. While studies showing higher risk of suicide and mental health risks of Lyme/MSIDS certainly helps educate LLMD’s and patients – please remember these same patients are being gaslit everyday by doctors and health professionals. They are still being told it’s all in their head.
10. While there is greater public awareness, the personal stories aren’t changing science and the medical profession’s attitudes and beliefs about Lyme/MSIDS. While these stories are crucial for patients I don’t see them impacting the ‘powers that be.’

I end this on a positive note: if you want true lasting help, face these facts and go around the system to get help from a Lyme literate doctor.  In my experience your best help will come from finding a local Lyme support group in your area.  These folks are the boots on the ground and will be familiar with doctors in your area.  Finding an experienced doctor is one of the first steps.  You may need more than one doctor, and it isn’t uncommon to change doctors somewhere along the line.  There’s a ton to know and a ton to learn.  Put one foot in front of the other and keep on going.  Knowledge accrues so start learning today what you can and most importantly, have grace for yourself.  This is a tough road.