Archive for the ‘Lyme’ Category

The Runaway Suitcase & A Hitchhiking Tick

https://www.lymedisease.org/the-runaway-suitcase-and-a-hitchhiking-tick/

The runaway suitcase and a hitchhiking tick

By Nicole Bell

May 6, 2025

Last year, I went to DC to attend a CDC event. I stayed at a Westin in Virginia right outside the city. I was getting ready to leave and stood behind my minivan searching for my keys. 

As I rummaged through my bag, my suitcase started rolling down the sloped parking lot. I didn’t move quite fast enough, and it rolled across the lot, hitting the curb and falling into uncut grass.

I laughed, recovered my bag, and wheeled it back to the car. But because of my life experiences, I paused. I stared at the bag and decided to check for ticks before I put it in the car. Virginia is an emerging endemic area, and there was a lot of grass.

My inner dialogue was telling me… “man, the PTSD runs deep… I must be crazy… I can’t believe I am checking for ticks in a parking lot…”

And then, I saw it. A tiny little tick scurrying across my suitcase.

I was seconds away from putting that little bugger in my minivan and driving it back, across state lines, to shepherd it into my home.

I wasn’t out hiking. I wasn’t gardening. I was in a parking lot getting ready for a business meeting.

Exposures are everywhere. Be aware. If you have odd symptoms, get tested. I’m happy to help.

Nicole Bell, CEO of Galaxy Diagnostics, is also the author of What Lurks in the Woods and The State of Lyme Disease Research. This post first appeared on her Instagram page.

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**Comment**

A solid reminder that we are never truly safe, and why we must be continually vigilant.

Ticks have been found on the beach, under rocks, picnic tables, in caves, in trees, in urban areas, and even in cracks of sidewalks:  https://madisonarealymesupportgroup.com/2018/06/07/ticks-on-beaches/ 

For more:

 
 

Category:

Activism, Lyme, Uncategorized

Lyme Disease With Decrease in Reflexes

https://danielcameronmd.com/lyme-disease-hyporeflexia/

Lyme Disease with Weakness and Hyporeflexia

Posted By: Laurie Martin
April 22, 2025

This case involved a 25-year-old woman who experienced progressive numbness and tingling, beginning in her torso and eventually affecting her entire body. Over a four-week period, her neurological symptoms worsened, including a decrease in her reflexes (hyporeflexia), prompting her to seek care at a neurology clinic. Notably, she lacked the hallmark features typically associated with Lyme disease.

Instead, her clinical presentation was dominated by decreased reflexes (hyporeflexia) and sensory disturbances. Symptoms initially localized to the hypogastric region gradually radiated to her back and extremities.

“The numbness and tingling began on the right side of her stomach and radiated to her back and later spread to her entire body. The tingling was not associated with any burning or pins-and-needles sensation,” the authors wrote.¹

Alarming Progression of Symptoms

The symptoms significantly impaired her daily functioning, including her ability to care for her child.

“She especially became alarmed when she could not hold her toddler anymore and ended up dropping the child secondary to her numbness and tingling,” the authors reported.

Neurological Findings

A motor examination revealed:

  • Decreased muscle tone, more pronounced in the upper limbs (3/5 strength) than in the lower limbs (4/5 strength)
  • Hyporeflexia in the biceps, triceps, patellar, and Achilles tendons
Diagnostic Workup

A lumbar puncture revealed an elevated protein concentration in cerebrospinal fluid (148 mg/dL; normal range: 15–60 mg/dL), suggesting central nervous system involvement. The diagnosis of Lyme disease was confirmed via Western blot testing.

Comparison to Logigian and Steere’s Findings

This case contrasts with findings from the 1990 study by Logigian and Steere published in The New England Journal of Medicine, which evaluated 27 patients with chronic neurologic Lyme disease. In that study, 25 of 27 patients (93%) had normal CSF results, including normal protein levels and no pleocytosis.²

This discrepancy underscores a key point: while CSF abnormalities may support the diagnosis of neurologic Lyme disease, their absence does not rule it out. The variability in neurological presentations highlights the importance of clinical judgment.

Treatment and Outcome

The patient was initially treated with intravenous ceftriaxone for three days, followed by oral doxycycline. Her response to treatment was both rapid and substantial. Upon discharge:

• She regained full spontaneous movement in all extremities.

• Her gait had normalized.

“At the time of discharge, the patient was able to move all extremities spontaneously and ambulate with a normal gait,” the authors noted.

Four Key Discussion Points
1. Neurological Manifestations of Lyme Disease

This case reinforces the importance of recognizing the diverse neurological presentations of Lyme disease. As shown in the Logigian and Steere study, the absence of CSF abnormalities is not uncommon in chronic neurologic Lyme. Clinicians should consider Lyme disease even when classic signs are absent.

2. Role of Lumbar Puncture in Diagnosis

Although this patient had elevated CSF protein levels, many patients with neurologic Lyme disease may have normal CSF results. This highlights the need to use a combination of clinical history, physical exam, and serological testing to make the diagnosis.

3. Timely Diagnosis and Treatment

Despite a delay in diagnosis, the patient responded well to antibiotics. The treatment regimen—IV ceftriaxone followed by oral doxycycline—is effective in managing Lyme neuroborreliosis.

4. Impact on Quality of Life

The patient’s neurological symptoms significantly affected her ability to care for her child. Early recognition and treatment are vital to restoring function and preserving quality of life.

Conclusion

Timely diagnosis and treatment of Lyme neuroborreliosis can lead to excellent outcomes, even in patients with atypical presentations. This case emphasizes the importance of clinical awareness and early intervention in restoring function and providing reassurance.

Related Articles:

Lyme disease leads to muscle weakness of the leg and constipation

Atypical symptoms of Lyme disease: numbness and abdominal wall weakness

References
  1. Semy R, et al. Lyme Disease Presenting With Interesting Neurological Features of Weakness and Hyporeflexia: A Case Report.
  2. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323:1438–1444.

Category:

Lyme, research, Treatment

“What is Happening Here is Criminal and If You Don’t Believe Me, Ask Anyone With Lyme.”

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/33514992?

“What is happening here is criminal and if you don’t believe me, ask ANYONE with Lyme.”

Carl Tuttle
Hudson, NH, United States
May 11, 2025

All Tuttle family members experienced this travesty so everything you are about to read in this Facebook post is true and it has been ongoing for three decades. It is criminal and all a result of the rush to create a vaccine. A chronic relapsing seronegative disease does not fit the business model of patent royalties, vaccine development and pharmaceutical profits. So deny the chronically infected and your patent royalties continue to reap benefits. 

In other words, patent royalties and pharmaceutical profits over lifesaving care.

Those who have colluded to suppress evidence of antibiotic resistance (chronic Lyme) should be prosecuted and sent to jail.

Everyone happy with the way our Public Health Officials handled Covid?? The sick and disabled Lyme community has been SHOUTING from the rooftops for decades!!! Everyone knows someone who has been horribly affected by Lyme disease… SHARE WIDELY!!!

Kegin Freedom

https://www.facebook.com/photo?fbid=30451510191160844&set=a.199275693477692

I’ve tried explaining this a few times and I won’t stop until people get it. This isn’t like cancer or any other disease where I can go to a Dr that’s covered by my insurance and receive treatment. What is happening here is criminal and if you don’t believe me, ask ANYONE with Lyme.

First, you have to get a Dr to agree to do a Lyme test. Don’t ask me why but they don’t like doing them. Most Dr’s believe Lyme is extremely rare. It’s not btw so if they agree to do it, great. Now you’re gonna go home for up to 10 days while you wait on this test. In the meantime, you’re gonna be sick as hell. You’re gonna be so tired you can’t get up. You’re gonna be dizzy even while lying down. You’re gonna see floaters in your eyes 24/7. When you get up to pee, your legs are gonna weigh 500 pounds. You’re gonna feel like your insides are on fire. You’re gonna not have much of an appetite and you’re gonna possibly lose weight. Now imagine having Ebola and you can’t get any meds because hey, you’re waiting on that test. Now imagine that test comes back with two bands. They are looking for antibodies to Borrelia. Ok, so you got two bands. Dr tells you it’s negative. The CDC says you have to have FIVE bands. You go home and you don’t get better, but hey Dr says you don’t have Lyme. There is no reason to have five bands other than outright lies and denying Lyme exists. Any bands mean you have Borrelia. Now there’s IGG AND IGM. IGM means you have active Borrelia in your blood. IGG means past infection. Drs don’t even know how to read these tests. Do you get that? They don’t know. I had to educate myself. So let’s say my Dr told me I was negative and I didn’t know any better and was sent home. Do you realize what that means? That means to this day I wouldn’t know what was wrong with me. Now let’s move to the next step, let’s say the Dr believes you and says ok you have Lyme. Now you’re gonna get Doxy for a week or two. Do you understand that you can’t get better in that short amount of time? Don’t believe me? Find me one person that did. Just ONE! You can’t. It takes a minimum of 3-6 months. That’s minimum!!!! Ok, so now you’ve got your two weeks of doxy and you’re supposed to be better now. Are you getting it yet?

Now all this time you’ve probably needed IV ABX and if you’re not one of the lucky ones that got that, guess what’s happening? As you’re body is infested with Borrelia, it’s now drilled itself into your tissues. Remember I told you Borrelia is the cousin of syphillis and it’s a corkscrew shaped bacteria that is literally drilling into every tissue. Brain, heart, lungs, thyroid, etc., Now you’ve got arthritis, now you have heart problems, thyroid problems. Now you’re really sick. Guess what comes next? You start reading. You realize you’re in big trouble. You call your Dr back. They say look you’re on the Doxy so you go to two more specialists. They do more bloodwork, tests, MRI’s, CT scans, but they can’t find anything wrong with you. All the tests are great! You’re a specimen of great health!

If you’re still with me, hang in there, this is where it gets good. So you have enough sense still to start researching, and you realize you probably have other diseases the tick gave you called co infections (Babesia, Bartonella, etc.,) You try to get your Dr to test for those. Well, maybe insurance will cover that. Maybe not. So here’s where Lyme _ _ _ _ _ you every which way. Your immune system has now shut down. Just like AIDS so now you’re lucky if you show up positive for these things because you’re body isn’t making antibodies. You still following me? Here’s where it gets good. You start hearing about Lyme Dr’s. You’re like great! Finally! _ _ _ _ _ _ _ help! But you call and they say cash only. We don’t accept insurance. You’re like what kind of nightmare am I in? Here’s where you’re in trouble if you don’t have the money. Now what do you do? Who’s gonna help you without being able to pay these Lyme drs. And you have to be careful, there’s a lot of Dr’s out there preying on the weak and desperate and that’s exactly what we are by this point. Even these celebrities who have millions are trying anything to get well. You haven’t seen anything like Lyme in your life! I’m tired of trying to explain what we go though. We don’t want your sympathy! We want you to care enough to change our laws! There are so many out here suffering and it should be a crime what’s happening! The testing is inaccurate. The treatment doesn’t work (that doxy for a few weeks) its not enough. Now imagine you’re this sick with Lyme (Borellia) and all these co infections. Lyme isn’t done with you yet. Now that immune system I told you about. Now anything you’ve ever had is going to come out because your immune system can’t fight it off. You ever had chicken pox? You got it now in addition to Lyme. You ever had hand, foot, and mouth. Yeah, me either but I do now because I clearly have been exposed to it probably from my kids. Ever had cold sores? You do now! Do you get it yet? What does this sound like? It sounds like AIDS doesn’t it? It sounds like an immunosuppressive person. Welp, try getting a Dr to see it that way. Now add into all that _ _ _ _ show people telling you you’re not that sick. Add into that everyday life that goes on whether you’re sick or not. Lyme has an astronomical suicide rate. Do you still need to ask why? If you know someone with Lyme, please share this post

Any questions?

Carl Tuttle
Independent Researcher
Hudson, NH

1. Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker, Lorraine Johnson
Published: January 02, 2014
http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796

2. Under our Skin 5min extended trailer
https://www.youtube.com/watch?v=sxWgS0XLVqw

3. The Quiet Epidemic – Official Trailer (2min)
https://www.youtube.com/watch?v=I4C71N290co

“In the fullness of time, the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and the entire insurance industry colluded to deny a disease.”    -Kenneth B. Liegner, MD, Internal Medicine, New York

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**Comment**

Hit the nail squarely on the head.

For more:

Category:

Activism, Lyme, Testing, Treatment

GLA Grantee Publishes Two Studies in Leading Journal

https://www.globallymealliance.org/news/gla-grantee-publishes-two-pivotal-studies-in-leading-journal?

GLA Grantee Publishes Two Pivotal Studies in Leading Journal

by Admin at Global Lyme Alliance on April 23, 2025

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >GLA Grantee Publishes Two Pivotal Studies in Leading Journal</span>

April 23, 2025–Global Lyme Alliance (GLA) is proud to announce that Dr. Brandon Jutras, a GLA grantee and researcher at Northwestern University, has published two pivotal studies in Science Translational Medicine, which were selected for the journal’s cover, highlighting the significance and innovation of the work.

The twin studies were published online today. In the first study, Dr. Jutras and his team demonstrate that fragments of the Borrelia burgdorferi cell wall, called peptidoglycan, can persist in the livers of mice and in the joints of patients with Lyme arthritis. These bacterial remnants may act as a trigger for continued inflammation even after the infection has been treated. 

In the second study, the researchers explore the use of piperacillin, a beta-lactam antibiotic, as a novel therapeutic strategy in Lyme disease. While piperacillin was highly effective at killing B. burgdorferi in both in vitro models and mice, it was shown to cause less disruption to the gut microbiome than other commonly used antibiotics, an important advantage in reducing unintended harm to beneficial bacteria.

“The new publications represent a significant step forward in Lyme disease research, at a time when the geographic range of Lyme disease–transmitting ticks is expanding and more individuals are at risk of both acute infection and long-term complications” said GLA’s Chief Scientific Officer, Armin Alaedini, PhD. “Dr. Jutras’s research provides important insights into how bacterial remnants may contribute to persistent inflammation and points to promising new directions for both diagnosis and therapeutic intervention.”

GLA’s funding of these studies is part of its ongoing mission to advance innovative, high-impact science that can transform outcomes for the millions affected by Lyme and other tick-borne diseases.

About Global Lyme Alliance:
Global Lyme Alliance is the leading Lyme disease nonprofit dedicated to fighting Lyme disease through research, awareness, and patient support.

Media Contact:
Please email info@gla.org for media inquiries.

Publications:

www.science.org/doi/10.1126/scitranslmed.adr9091 

www.science.org/doi/10.1126/scitranslmed.adr2955

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**Comment**

I hate to let the air out of the balloon but this is not new news.  Knowing that bacterial fragments can cause inflammation has been studied ad nauseum:

When is persistent infection going to be studied?

We need a redo regarding Lyme/MSIDS research.  It’s all based upon a false premise by those with conflicts of interest:

Category:

Lyme, research, Treatment

Charting a Path Towards New Treatments for Chronic Lyme Disease

https://www.lymedisease.org/charting-a-path-towards-new-treatments-for-chronic-lyme-disease/

Charting a path towards new treatments for chronic Lyme disease

Last year, the National Academies of Science, Engineering and Medicine (NASEM) convened a committee of experts to review the research on chronic Lyme disease and figure out what it would take to develop better treatments.

Now, that committee has completed its report, entitled Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses.

Click here to download a copy of the report.

On May 9, NASEM will host a public webinar explaining the report and answering questions about it.

Click here to register for the webinar.

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**Comment**

I haven’t read this sucker yet – it’s 253 pages, but I’ve become so jaded with research for tick-borne illness that I’m dreading it already.

Until we start OVER, and I mean from square one, research is all tainted and based on false premises.  Don’t believe me?  Listen to Willy himself:

http://

Willy Burgforfer, Ph.D. Lyme Disease ‘Discoverer’

Category:

Lyme, research