Misdiagnosed & Overlooked: The Trouble with Lyme Testing

WELCOME TO EPISODE 232

EPISODE TRANSCRIPT

0:03
Welcome to the Beautifully Broken podcast.
I'm your host Freddie Kimmel, and on the show we explore the survivor's journey, practitioners making a difference, and the therapeutic treatments and transformational technology that allow the body to heal itself.
0:18
Witness the inspiration we gain by navigating the human experience with grace, humility, and a healthy dose of mistakes.
Because part of being human is being beautifully broken.
Friends, welcome back to the Beautifully Broken podcast.
0:38
It is just you and me today and we are going to be diving in to a topic that has impacted millions of people but remains misunderstood, misdiagnosed, and very overlooked.
This is Lyme disease testing.
So if you or somebody you love has been struggling with chronic fatigue, brain fog, joint pain, neurological symptoms, or a mystery illness that doctors cannot seem to figure out, this could be the episode for you to download, share, and to really support someone in your life that is looking for this resource.
1:14
Now, before we dive in to the specifics of this podcast, which is Lyme disease testing actually, I want to take a step back and I need to acknowledge the elephant in the room.
Think of your body like a vineyard.
1:29
In a thriving vineyard, every element works in harmony to create the ideal yield of grape for the perfect wine, we need the right soil, sufficient sunlight, clean water.
We actually need a balance of species, including the birds, that would help control the pests or pollinate the different flowers in that ecosystem.
1:53
If just one of these factors is off, dramatic temperature change, elimination of a single species, the entire system suffers and the grapes don't flourish in the same way.
In a similar fashion, the human body needs a balanced terrain, the immune system, muscle mass, sleep patterns, mental stability, exposure to the rising sun, clean food and water, and sufficient drainage pathways.
2:25
This keeps us resilient against disease.
We rarely get sick from a single bacteria or Co infection.
Instead, from my experience, it's the strength of this internal ecosystem, the fishbowl, the milieu that determines the overall health and how we're impacted from a single bacteria.
2:49
And for the purposes of this episode, I do think it's critical to understand unique infections like Lyme, how they impact the body, and why understanding what's going on in the milieu, in the ecosystem, can help us establish an effective treatment protocol.
3:09
Lyme disease is one of the most controversial and complicated conditions in modern medicine.
That is in part due to the way that we test for it.
And arguably, as you might learn from this podcast, it is deeply flawed.
3:25
So today we're going to unpack why Lyme disease testing impacts so many people, how the science of Borrelia bacteria complicates the diagnostic process, and what options are available for those searching for answers, what exists today and what is coming in the future.
3:44
So let's start with how Lyme testing is done in conventional medicine.
If you walk into the doctor's office and you were to suspect Lyme, you're going to be given A2 tiered recommended test from the CDC.
This is the ELISA test which looks for antibodies against Lyme bacteria.
4:04
If that's positive, they follow up with a Western blot to confirm the presence of specific Lyme related proteins.
And here is the rub.
Lyme disease, in all's beauty, is a highly intelligent form of life, and it is a shapeshifter.
4:22
Borrelia burgdorfi, that is the bacteria responsible for Lyme, is an expert at hiding and evading the immune system.
It can change its surface proteins.
It can suppress immune responses.
It can go dormant, meaning that the very antibodies the test is looking for may not be present when you take a test.
4:43
This is highly problematic.
This is why so many people, especially those with chronic Lyme, get false negatives.
There is a study that I will have cited in this source material on my website that shows the two tiered Lyme test has the sensitivity as low as 35 to 50% in early stage infections, meaning that up to 65% of true Lyme cases may go undiagnosed.
5:08
So there's another area we need to address, and that is the questionable removal of unique markers of the tests we're using today.
And I never understood this when I was in the trenches of Lyme.
It was something that made me, when I learned about it, want to bang my head against the wall or concrete or the floor.
5:29
So we're going to talk about this in a very loving, inviting way.
And whether it falls under the filter of gross negligence or conspiratory activities or good science, I will just let you make the call on your own.
But we're going to talk about the facts and that is the removal of certain Lyme disease markers from the Western blot test.
5:49
Remember that two test level that we're doing to diagnose Lyme.
So in the early 90s, specific protein bands, band 31 and 34 were left out of the standard diagnostic criteria at the time a Lyme disease vaccine was being developed.
6:06
And these bands could create false positives in vaccinated individuals.
Well, that might have made sense for the vaccine trials, but the reality was the vaccine was pulled in 2002 for the market and the testing criteria never changed.
6:24
So here we are 25 years later and these very important immune markers which could help diagnose actual Lyme infections are gone from standard tests today.
This has led to hundreds of thousands of people falling through the cracks, myself being one of them.
6:42
So where is the limey to go?
What are we supposed to do?
I know you're probably thinking that if the standard test is failing us, you know, I want to know and I want to share with you the alternatives.
So thankfully for you and I, there are specialized labs that go well beyond the CDC's limited criteria.
7:00
They use more advanced testing methodology to detect Lyme disease and Lyme's Co infections.
Lyme rarely travels alone.
And some of the best, some of the best in the world are I Gen.
X that is I gene X that is a leader in tick borne disease testing.
7:18
I will put all these links in the show notes.
They carry those missing bands 31 and 34 and that improves their diagnostic accuracy.
There is Armin Labs which is a German based company.
The lab uses T cell based test to detective active Lyme infections, not just the antibodies.
7:38
There is the BCA clinic that is a European lab specializing in chronic Lyme detection as well as Co infections.
There's medical diagnostic laboratories, that's MDL.
They have a broad panel for both tick borne diseases, including Borrelia and the Co infections.
7:55
And then there's probably my favorite today, which is vibrant Wellness and they offer a test known as tick borne 2 point O.
It is one of the most comprehensive panels for detecting Lyme disease and Co infections.
They utilize a peptide based microarray for enhancing sensitivity specific strains detecting not only Borrelia but also the common coeffections like Bartonella, Babesia, Ehrlichia, Rickettsia.
8:21
Unlike traditional test, Vibrant's approach is capturing a broader immune response so it can detect infections earlier and more effectively.
Also, they're able to see if it's chronic or not.
This is who I've been using through my precision medical clinic in Austin, TX and I've been a amazed to see that all the Co infections that I used to have are gone.
8:46
No active Lyme and I just have some memory that I used to fight Borrelia with my immune system.
So I've been really happy with them and it's a very thorough test.
I'll definitely try to get them on the podcast for you guys.
So when we hosted, it was a while ago now.
9:03
Now we're up to like, you know, whatever the episode, you know, we're past 23234.
When we hosted the creators of the Quiet Epidemic in episode 159, we quickly covered on some incredible innovation in the future.
And that was the work of Doctor Neil Specter and some of the innovations he was doing in testing.
9:23
And before his passing in 2020, Doctor Neil Specter at Duke University was leading groundbreaking research to revolutionize Lyme disease testing.
He had actually suffered, if you've seen the movie, undiagnosed Lyme that led to severe cardiac complications and eventually heart transplant.
9:42
And he was really trying to hone in these diagnostics.
And one of the most promising projects was the development of HS198, which is a small molecule imaging probe designed to bind directly to Borrelia bergdorfi and make a bacteria visible in real time imaging.
10:02
This could offer a highly non invasive, highly accurate way to detect Lyme infections even in the dormant phases.
And that is I can't tell you how important that is because usually when our body goes through a major stressor, the vineyard or the terrain is impacted, people will often have a flare or reoccurrence.
10:23
So we celebrate Doctor Neil and his work and that's definitely a documentary that you want to check out.
But beyond Doctor Spector, there are many other advancements in Lyme.
There is the emergence of a rapid single tier serial logic test.
There is AI diagnostics that's coming.
10:40
There are different urine based detection methods, and there are next generation molecular testing coming to the marketplace.
So everybody's working on it.
Researchers are now they have access to more tools than they ever had in the history of time to detect Lyme earlier more accurately and potentially with eliminating the need for an unreliable antibody testing platform.
11:07
Team, I'm ready to close this out.
The biggest take away for me from today's episode is that Lyme disease is the most common vector borne disease in the United States and it's on the rise with roughly 564,000 people diagnosed a year.
11:25
And as we've just discussed, that could be a low ball number.
But thanks to people like Doctor Spector and Vibrant Labs and I, Gen.
X and all the innovation that's happening, we're going to turn the bus around.
I want people to know that there are options out there.
11:42
As we said, there's more to it than a single infection or a single bacteria.
But my true advice is anyone struggling with a mystery chronic illness, The Walking wounded, if you will, we, we need to be advocates for ourselves and we need to speak out and we need to keep demanding for what is available that is going to really move us forward.
12:04
And certainly I've given suggestions in this episode, but I need to hear from you guys.
Let me know where you're at.
Let me know if you've been able to use any of these labs, if you've gotten a positive test.
I know it took me 2001 to maybe 2012 to finally find discover I Gen.
12:22
X.
At the time, it was very expensive, was all out of pocket, and I wasn't even allowed to mail my sample from New York.
I had to drive over to Jersey in my very compromised state.
So believe me, I've heard the stories, I've been there, but I feel the wave of change is coming.
If you want to dive deeper in the Lyme disease and check out other episodes that we've done, good ones to search are Doctor Bill Rawls on Overcoming Chronic Lyme and Restoring health.
12:46
He looks at his incredible herbal formulation, which is shown to be just as or more effective with less collateral damage than the current antibiotic regiments.
There is Lyme disease, Alzheimer's, and the power of the caregiver with Nicole Bell, incredible hero's journey.
13:03
And then we mentioned the quiet epidemic, Lyme disease confidential with Lindsay Keys and Winslow Crane Murdoch.
I am so proud of those two after that episode.
Over the next year and a half, I've seen them on the Senate floor advocating for people just like you and me who have struggled with chronic illness.
13:20
They're doing so much amazing work in the world.
If you found this episode helpful, if there was ever an episode, please share it with someone who needs to hear it.
Let's get the word out there because the more people that understand the flaws in the current testing and you can explain it to your primary care provider, the more we can push for change.
13:39
As always, I appreciate you, I see you, I believe in your ability to heal.
So until next time, stay curious, stay empowered, and keep breaking beautifully.
Big love team.
13:54
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14:13
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14:31
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14:50
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15:13
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15:29
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15:48
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16:07
Let's go, let's grow, let's repair.
Ladies and gentlemen, here we are with Season 9 of the podcast.
We're about to Crest into year 6.
Can you believe it?
16:22
I'm so glad you're still here.
And I just wanted to remind you, if you like the show, please head over to Apple or Spotify and give us a five star review.
It really expands the listenership.
Now, there's one big way you can continue to learn and deepen the relationship that we started in this very episode.
16:42
You can go to Beautifully Broken World and you can check out our brand new website and store.
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16:59
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Now if you want to see the faces of our guest and you want to watch me unbox products and see reviews, you can go over to YouTube at Beautifully Broken World.
17:20
Now this next message is from my vast team of Internet lawyers.
The information on this podcast is for education.
By listening, you agree not to use the information found here as medical advice to treat, diagnose or cure any medical condition in yourself or others.
17:38
Always consult your guiding physician for actual medical issues you may be having.
Now in my closing, we are truly in a paradigm shift.
We need you at your very best.
SO use these conversations as a jumping off point for further exploration.
17:57
Always listen to your own body and remember, while life may be painful, how we put the pieces back together is a beautiful, beautiful process.
I love you so much.
I'm your host, Freddie Kimmel.