Archive for the ‘Lyme’ Category

Abnormal MRI Leads to Lyme Encephalitis Diagnosis

https://danielcameronmd.com/abnormal-mri-leads-to-lyme-encephalitis-diagnosis/

ABNORMAL MRI LEADS TO LYME ENCEPHALITIS DIAGNOSIS

elderly woman with lyme encephalitis laying in hospital bed

Encephalitis is a rare manifestation of Lyme disease with brain parenchymal inflammation being documented in only a handful of cases. In this study, the authors present the case of Lyme neuroborreliosis with encephalitis with “significant parenchymal inflammation on MRI imaging in an immunosuppressed patient.” [1]

By 

In their article “Lyme neuroborreliosis with encephalitis: A rare case,” Rosendahl and colleagues describe a 74-year-old immunocompromised woman, who was admitted to the hospital with confusion, paranoid delusions, weight loss, back pains, and a history of fever and vomiting suspect of cancer and infection of unknown origin.¹

The woman had been hospitalized 4 times over a 4-month period.

She had a history of Lupus, myasthenia gravis (azathioprine and pyridostigmine treated), osteoporosis and atrial fibrillation. But did not have a history of dementia or psychiatric illness.

Initially, she was treated for possible bacterial meningitis and viral encephalitis.

The woman did not recall having a tick bite, EM rash or painful meningoradiculitis. “However, approximately three months prior the patient was efficiently treated for a non-itching universal skin rash with a topical steroid and antihistamines.”

This is the “first case of confirmed [Lyme neuroborreliosis] encephalitis with significant parenchymal MRI changes in a broadly immunosuppressed patient.”

Based on her spinal tap and MRI results, the woman was diagnosed with Lyme meningitis and treated with IV ceftriaxone followed by a week of oral doxycycline.

Her repeat spinal tap findings had improved. The hyperintensities in basal gangliae and thalamus resolved. However, she was left with cognitive problems, such as memory loss.

The authors discussed the need to consider Lyme encephalitis in a patient presenting with uncharacteristic symptoms for 3 months.

Note: This is a European case study involving a woman suspected of contracting Lyme disease from the tick species B. garinii. The results of this case may not apply to those in the U.S. involving infections from B. burgdorferi.

Related Articles:

Tick-borne encephalitis and Lyme disease can lead to chronic illness

Powassan virus encephalitis contracted during winter months

Lyme disease triggers inflammation in the ‘hindbrain’

References:
  1. Rosendahl SB, Ravn P, Lebech AM, Midtgaard Stenor CP. Lyme neuroborreliosis with encephalitis: A rare case. IDCases. 2023;31:e01704. doi:10.1016/j.idcr.2023.e01704

For more:

Category:

Lyme, Psychological Aspects, research, Testing, Treatment

Jessica Devine’s Journey With Lyme Disease

https://www.globallymealliance.org/blog/jessica-devines-journey-with-lyme-disease?

Jessica Devine’s Journey with Lyme Disease

by Jessica Devine on April 11, 2023

Hear directly from a patient advocate about all the strategies she used to recover from Lyme.

Many have asked what I have done in my journey to heal, and I have finally typed it up.

I am the first to say it is a wide combination of things and choices I have made throughout the years that has got me here. Some of which I believe have made a significant impact in moving me forward. Most of the things I believe in exist within the empowering Rise Above Lyme Support Group. I share everything I have tried or still use.  We also aim to share things we haven’t tried, as they may work for others. We are a group seeking solutions, first and foremost.

One of the biggest reasons this group was created was to provide hope by providing education, and most of all solutions, to those struggling.

241209This is just one of the few private pictures I have taken. Ones that I never intended on sharing, but I am learning that vulnerability is okay. It is a small glimpse into just a few moments of years of struggles. I have been to hell and back. But I feel that the things I chose moved me forward.  I regret nothing in what I have or have not chosen- I followed my instincts. I am not saying my way is the only way. I am not saying this will heal you. I am not saying other methods are better or worse. I am simply living as an open book, and if sharing what I did helps you then I am certainly not going to be quiet about it.

Am I in perfect health? NO. Do I have bad days? YES. But I have a life now. I am a mother again.  I am a wife again. I am a daughter again. I am a sister again. I am a friend to many. I do things in the world again. I laugh a lot. I am drastically better. I choose things that bring joy. And I protect myself.

Have I changed? For sure I have. I am extremely strong and I know it. Hell, I had to be strong enough to treat my child during my own battle. I had to be strong enough to set an example.

Now, I know I am resilient.

I know who I am without a hint of doubt.  I have Lyme disease, Rocky Mountain Spotted Fever,  Babesia, Bartonella, Erhlichia, TBRF and several more illnesses. I was once bedridden with the worst symptoms a human should ever have to experience.

But now, I wake everyday happy to enjoy my life. I am doing the treadmill consistently and don’t crash afterwards.  I no longer live in pain and my brain is fully recovered.  I have control over my health and I am grateful for each and every day.

Here is my list of each thing I chose along my healing journey:

(Join the Facebook page for posts on each subject)

1. I found a Lyme Literate Medical Professional 

2. I did 18 months of IV antibiotics (plus 6 months oral)

3. I took supplements and herbals throughout treatment and still take things (Here is the full list)

4. I removed root canals and metals

5. I went to all natural protocol as soon as stable

6. I addressed mold

7. I addressed parasites

8. I always work on viruses

9. I focused on gut health throughout

10. I consistently addressed immune system, detox and inflammation. Super important.

11. I added PEMF, an infrared photon mat

12. I added gentle exercise

13. I fixed my regularity 💩

14. I added a WAVE 1 frequency device

15. I established regular therapy sessions

Note:

💚 I let go of false friendships early on. I held on to the people that stood by me and let the rest go. I let go of anyone who judged me or didn’t believe me.

💚 I do not stay with dismissive doctors. They get fired. I will not let them dismiss me ever again.

💚 I did advocacy work to give me purpose and to fight back.

💚 I do not engage in negativity and avoid it at all costs.

💚 I am always seeking peace and joy wherever I can.

All of these things have contributed to my healing and improving my symptoms. Each thing I did moved me forward in some way. And I regret nothing.  🤜💚🤛

There is hope. You can Rise Above this disease.

Click below to sign up for GLA’s newsletter.

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
GLA Contributor

Jessica Devine

GLA Contributor

*Opinions expressed by contributors are their own. Jessica Devine, a lyme disease patient advocate, founded numerous support groups alongside a website, Rise Above Lyme, as a safe space to seek accurate information on any topic related to Lyme and co-infections. Now five years later, that group has expanded into the Rise Above Lyme of today. Her goal is to provide those suffering with hope, comfort, and, most of all, solutions to make each patient’s journey a little easier.

Email: Theriseabovelyme@gmail.com

Website: https://www.riseabovelyme.com

Category:

Activism, Lyme, Treatment

Calgary Family Shares Dire Tale to Raise Awareness of Lyme Disease

https://calgary.ctvnews.ca/calgary-family-shares-dire-tale-to-raise-awareness-of-lyme-disease-

Calgary family shares dire tale to raise awareness of Lyme disease

Category:

Activism, Lyme

But She Looks Fine: From Illness To Activism

https://www.lymedisease.org/from-illness-to-activism-olivia/

From illness to activism, Olivia just keeps going

By Dorothy Kupcha Leland

May 3, 2023

I first became aware of Olivia Goodreau about six years ago.

I was at my computer, watching the livestream of the first meeting of the federal Tick-Borne Disease Working Group, which convened in Washington DC in December 2017.

At one point, during the meeting’s public comments, a young blonde girl stepped up to the microphone and confidently said, “My name is Olivia Goodreau, and I am 13 years old…I have had Lyme disease for half of my life, and I do not remember what it feels like not to be sick.”

This poised and well-spoken teenager certainly got my attention. I imagine everybody else watching that day took notice as well.

That was just the beginning of Olivia’s public activism on behalf of Lyme patients. She and her family started an organization called the LivLyme Foundation. It has raised money to help pay for Lyme treatment for children, sponsored conferences, and given research grants to scientists.

Through it all, Olivia has functioned as the public face of the foundation. She speaks to the media, helps plan LivLyme events, and sometimes meets with legislators and prominent researchers—heady stuff for a teenager.

She has also worked with a team of design and development experts to create an app called the TickTracker. It allows people to use their cell phones to report and track the location of ticks.

And now she has written a book.

Mysterious symptoms

In her memoir But She Looks Fine: From Illness to Activism, Olivia tells her story from when she first starts experiencing mysterious health symptoms at age 7.

In second grade, weird things start happening. Her vision goes in and out, and sometimes she finds it hard to move her body. “My back turned into a wooden board,” she writes. “My feet became cement blocks.”

A bizarre episode during a school choir performance brings Olivia to the brink of collapse. She lands in the hospital and endures days of tests, including x-rays, EKGs, and an MRI. None of it reveals anything amiss. One doctor tells her she just needs to drink more water. The family chooses to keep looking for answers.

After she’s been seen by more than 50 doctors, someone thinks to test Olivia for Lyme disease. When her Western blot comes back positive, they give her the CDC-recommended protocol of 30 days of antibiotics. Initially, she feels better with the drugs. But a few days after finishing the pills, her symptoms return with a vengeance.

Eventually, Olivia is seen by renowned Lyme expert Dr. Richard Horowitz. He diagnoses her with chronic Lyme, Postural Orthostatic Tachycardia Syndrome (POTS), various co-infections and a rare blood disorder. Slowly and surely, Olivia writes, his treatments help her feel better. But it doesn’t happen all at once.

Yearning for “normal”

About this time, the LivLyme Foundation is kicking into high gear and Olivia becomes heavily involved in the world of Lyme activism. She clearly takes great satisfaction from this, but she also longs for normal teenage experiences like friends, parties, and school activities.

Regrettably, some unfortunate instances of bullying mar her middle school years. (I’m aware of other young people with Lyme disease who also have been harassed at school. Not only do these kids have to deal with their miserable symptoms, but they must also put up with bad behavior from classmates. It’s the pits.)

A particularly compelling aspect of the book is the advice Olivia gives in the form of six letters. “Dear Parents,” “Dear Doctors,” “Dear Classmates,” “Dear Politicians,” “Dear Scientists and Researchers,” and “Dear Significant Other” speak to what ailing young people need from others in their lives.

Though not mentioned in the book, social media posts tell us Olivia will attend UCLA in the fall. (My alma mater!)

I suspect she will continue as a force to be reckoned with in the world of Lyme advocacy—or anything else she undertakes.

If you want an inspiring read, pick up a copy of But She Looks Fine: From Illness to Activism.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

For more:

Category:

Activism, Lyme

Systemic Comparisons Between Lyme Disease and Post-Treatment Lyme Disease Syndrome in the U.S. With Administrative Claims Data

https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(23)00089-0/fulltext

Systematic comparisons between Lyme disease and post-treatment Lyme disease syndrome in the U.S. with administrative claims data

, , , , ,
Open Access
Published: March 21, 2023
DOI:https://doi.org/10.1016/j.ebiom.2023.104524

Summary

Background
Post-treatment Lyme disease syndrome (PTLDS) is used to describe Lyme disease patients who have the infection cleared by antibiotic but then experienced persisting symptoms of pain, fatigue, or cognitive impairment. Currently, little is known about the cause or epidemiology of PTLDS.
Methods
We conducted a data-driven study with a large nationwide administrative dataset, which consists of more than 98 billion billing and 1.4 billion prescription records between 2008 and 2016, to identify unique aspects of PTLDS that could have diagnostic and etiologic values. We defined PTLDS based on its symptomatology and compared the demographic, longitudinal changes of comorbidity, and antibiotic prescriptions between patients who have Lyme with absence of prolonged symptoms (APS) and PTLDS.
Findings
The age and temporal distributions were similar between Lyme APS and PTLDS. The PTLDS-to-Lyme APS case ratio was 3.42%. The co-occurrence of 3 out of 19 chronic conditions were significantly higher in PTLDS versus Lyme APS—odds ratio and 95% CI for anemia, hyperlipidemia, and osteoarthrosis were 1.46 (1.11–1.92), 1.39 (1.15–1.68), and 1.62 (1.23–2.12) respectively. We did not find significant differences between PTLDS and Lyme APS for the number of types of antibiotics prescribed (incidence rate ratio = 1.009, p = 0.90) and for the prescription of each of the five antibiotics (FDR adjusted p values 0.72–0.95).
Interpretation
PTLDS cases have more codes corresponding to anemia, hyperlipidemia, and osteoarthrosis compared to Lyme APS. Our finding of hyperlipidemia is consistent with a dysregulation of fat metabolism reported by other researchers, and further investigation should be conducted to understand the potential biological relationship between the two.
Funding
Steven & Alexandra Cohen Foundation, Global Lyme Alliance, and the Pazala Foundation; National Institutes of Health R01ES032470.
________________
**Comment**
The first noticeable issue here is it is nearly impossible to determine if the infection is completely cleared by medications.  This is an ongoing problem.  There is no way to test to determine if the organism(s) are completely cleared, because they are typically not found in the blood – and worthless blood testing is what is used for Lyme/MSIDS.  So, this is a major flaw with the study.
And while numerous things can cause pain, fatigue, and cognitive issues – including treatment itself, it is the experience of this patient and many that I work with that retreatment will often either clear or improve all of these symptoms.  Sometimes it depends upon finding the right drug.  Sometimes it depends upon the right dosage.  And, sometimes it depends upon the length of treatment or all three or anything in between.  Nobody’s the same and everyone seems to respond differently.  This is another ongoing problem.  MSM wants to stuff everyone into a “one size fits all” box, but this is Pandora’s Box.
And while dysregulation of fat metabolism can be improved through diet and other treatments, anemia screams Babesia and osteoarthritis screams Lyme – both of which are typically not going to improve on their own without specific pathogen consideration and subsequent antimicrobial treatment.  Nuance in treating this is what is missing in MSM – which hasn’t changed in 40 years , which is why getting to a Lyme literate doctor is your best recourse.

Category:

Lyme, research