Lyme Disease Resources – Symptoms, Tests, Treatments, Rash, Prevalence, History, and Controversy

March 16, 2021

Symptoms and Diagnoses Suggestive of Lyme Disease or associated Coinfections / Stealth Infections

  • Digestive issues – can’t tolerate gluten, processed foods, or alcohol, or been diagnosed with IBS or Crohn’s or Celiac Disease
  • Pain and nerve symptoms or actual autoimmune diagnosis – joint pain and swelling, nerve pain, abnormal seeming headaches, rheumatoid arthritis, or Juvenile Rheumatoid Arthritis
  • Symptom-based diagnosis – fibromyalgia, multiple sclerosis, Parkinson’s disease, chronic fatigue, narcolepsy, dementia or Alzheimer’s, or schizophrenia

“Start Here” for Anyone with Suspected Ongoing Lyme Disease Symptoms or an Autoimmune Diagnosis 

Action Steps for Anyone Who Just Found a Tick Attached, or Thinks They Are Experiencing a New Lyme Infection

  • Review this ILADS Guide on How to Handle a Tick Bite
  • Get the tick tested – View Options
  • IMPORTANT – Please understand that your family medical doctor or urgent care physician may not understand the prevalence of Lyme, the inaccuracy of the tests (especially shortly after a tick bite), and the likelihood that Lyme Disease can become an ongoing, life altering condition. You need to become educated ASAP and may need to be uncomfortably assertive to receive proper early treatment

Treatment & Education Resources for Those Who Suspect Lyme Disease

  • Read Chronic by Dr. Phillips 
    • This is my top recommendation to get up to speed on this illness and be able to pursue testing and treatment with a Lyme Literate Doctor. It’s written in such a clear and engaging style where I actually enjoyed listening to the audiobook.
  • Read How Can I Get Better by Dr. Horowitz
  • Read Unlocking Lyme by Dr. Rawls
    • Most Lyme sufferers support their bodies’ healing with herbal strategies recommended by Dr. Rawls, Stephen Buhner, or Dr. William Cowden.  Buhner’s protocols seem to be most popular, but Dr. Rawls simplifies the explanations and process of taking herbs with strategies based on Buhner’s recommendations.
  • Access the website Lyme Warrior for a comprehensive list of antibiotic and natural treatment strategies
  • Find a Lyme Literate Doctor at Global Lyme Alliance
  • Explore BetterHealthGuy for treatment-related podcast episodes and other resources
  • Listen to Looking at Lyme Podcast – I found episode 5 most compelling where the host discusses her sickness and recovery with her father who is a medical doctor forced to learn about Lyme Disease as he watched his daughter suffer.

Treatment & Education Resources for Suspected Bartonella

Bartonella, which is passed to humans through cat scratches, fleas, and ticks, has been found to be present in 30-40% of pet cats. A survey of veterinary workers found that about 28% were infected with Bartonella, and 70% of the infected workers experienced headaches compared to 40% of the uninfected workers.

To Learn More About the History, Controversy, and Present Issues Surrounding Lyme

  • Watch Under our Skin Documentary
  • Listen to Patient Zero Podcast
    • I can’t recommend this podcast by New Hampshire Public Radio highly enough! It is the perfect mix of education, entertainment, and true crime and had multiple moments that made me gasp. It was also the main way that I got my wife, Val, up to speed on the Lyme Disease epidemic.
  • Have a family member or friend who is skeptical about stealth infections like Lyme Disease, Bartonella, and Babesiosis’ ability to wreck health while also being difficult for the medical community to diagnose and treat?  Have them watch some episodes of Monsters Inside Me. This show highlights that a number of infections around the world can harm our health and be difficult for medical doctors to test for.

Join a Community

Results of a small survey in the Facebook Group “Lyme Disease Support & Wellness”

I asked the question: “For those who have had testing confirm Lyme/coinfections, what other conditions were you diagnosed with before figuring out it was Lyme?”

Responses:

Fibromyalgia 24
Anxiety 19
Depression 16
Migraines 14
Hypothyroid/Hashimotos 13
Rheumatoid Arthritis & JRA 12
PCOS/Interstitial Cystitis 12
Irritable Bowel / Crohns 10
Chronic Fatigue 9
Connective Tissue Disease (Hyperflexibility/Ehlers Danlos) 8
Celiac Disease / Intolerances 7
POTS 7
Lupus 7
Bell’s Palsy 6
Peripheral neuropathy 5
Multiple Sclerosis 3

Lyme Disease Information as of early 2021

Lyme Disease Prevalence

As of 2021, the CDC is currently estimating 476k cases a year.

Prevalence of the Lyme Disease causing bacteria in ticks in PA in 2018

Prevalence in ticks in Eastern Tennessee in 2017

A Fascinating Site Reporting Prevalence of Lyme and Coinfections in New York

Prevalence in Ticks in Indiana

  • Indiana Lyme Disease Tick Infection Maps
  • Indiana is not considered to be a hotspot, However, in a recent survey of ticks greater than 30% of ticks tested carry Lyme Disease in about half of the counties of this state!
  • For anyone living in a state not considered to be an endemic hotspot, this highlights how until a tick survey is done in your state, we don’t know how common Lyme-carrying ticks are. Most medical doctors in Indiana are probably not aware of this prevalence either!

An update on Lyme Disease in Southern States – Louisiana

Lyme Disease Testing

In the first three weeks after infection, the test only detects Lyme 29 to 40 percent of the time. 

The two-tiered test system misses around 54% of patients. 

* In the video I share some specific numbers about testing accuracy, that on further research I would have rather not shared.  The take-home message about current Lyme Disease testing is that none of the tests are as accurate as we wish they were.

Lyme Disease Erythema Migrans Bulls-eye Rash

Many people who are infected don’t get a rash 

  • Estimated at 25% to at most 50% (though the CDC website currently suggests around 80% of people have a rash)
  • Not always a bullseye, can look more like a spider bite

The Lyme Disease IDSA Guidelines Controversy 

The IDSA released Lyme Disease Guidelines that were so obviously one-sided that the state of Connecticut launched an antitrust investigation, which revealed significant conflicts of interest on the Lyme Disease Guideline board.

Conflicts of interest on the board of IDSA

Evidence of Lyme Disease Persistence through treatments that are claimed to “cure” Lyme Disease

IDSA Medical advice currently states Lyme is easily cured by a round of oral antibiotic doxycycline, however, a 2017 study on monkeys found 0% cure rate with a 30 day round of doxy 

Research studies have shown that it is difficult to even kill all borrelia in a test tube with recommended IDSA protocols

Over 700 peer reviewed studies showing Lyme persistence 

Lyme Disease vs. Syphilis 

The medical community universally accepts the tertiary phase of syphilis and its ability to affect most every body system, yet, when it comes to borrelia which is another spirochetal infection with similar phases, many in the medical community deny chronic Lyme. 

Stomach Ulcers and Lyme – History Repeats Itself

A comparable story of the medical community’s resistance to accept a bacterial cause of disease is stomach ulcers and H.Pylori. For years ulcers were blamed on spicy foods and stress. When it was found that H. pylori infection was actually the main cause, it took about 15 years for medicine to accept the fact, despite good evidence presented to them.

Famous people with Lyme Disease

Even wealthy people with access to the “best doctors” can’t get good answers when their bodies start breaking down due to Lyme Disease

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