Archive for the ‘Psychological Aspects’ Category

Lyme & Memory Loss

https://www.globallymealliance.org/blog/lyme-and-memory-loss

Lyme and Memory Loss

by Jennifer Crystal, December 7, 2020

<img style="box-sizing:inherit;max-width:100%;height:auto;" src="https://www.globallymealliance.org/hubfs/Imported_Blog_Media/MyLymeLife_2-58-3.png&quot; alt="Lyme and Memory Loss“>

What causes memory loss specifically? And what does it feel like to experience it?

My long-term memory has always been sharp as a tack. I can repeat verbatim a conversation that happened two decades ago; I can tell you what a friend was wearing on the first day of third grade; I know what I ate at the restaurant my family went to on the last night of a vacation we took when I was in high school. People say, “It’s incredible that you can remember so much,” to which I often respond, “Just don’t ask me what I had for breakfast.”

The joke gets a good laugh, but it’s actually a serious matter: despite my unusually strong long-term memory, my short-term memory has been affected by the tick-borne illnesses Lyme disease, babesiosis, and ehrlichiosis. Some evenings I truly couldn’t tell you what I had for breakfast, and other times I need to look at my calendar to remember what I did that day. Once jogged, the memory comes back to me like a slow Google search, but the hang time between someone asking me about my day and my response can be embarrassingly long.

What causes memory loss specifically? And what does it feel like to experience it?

Though our central nervous systems are generally protected by the blood brain barrier, Lyme bacteria (spirochetes) are sneaky and smart, and can spiral their way across the border. Once that security breach occurs, a patient may experience “Lyme brain”, which can manifest as brain fog, word or song iteration, depression and anxiety, tremors, mini-seizures, headaches, burning extremities and memory loss.

As described in the book Conquering Lyme Disease: Science Bridges the Great Divide by Brian A. Fallon, MD and Jennifer Sotsky, MD, “Lyme disease can directly affect brain and sensorium in multiple ways: via direct infection, immune system effects, changes in neurotransmitter balance, and altered neural pathways.” Inflammation in the brain, as well as impaired oxygen flow to the brain as is often seen with babesiosis, can impact cognitive function. Drs. Fallon and Sotsky write that short-term memory problems are one of the most common cognitive effects of neurological Lyme disease. The book includes images of low blood flow in the brain of patients with memory impairment after Lyme disease (referred to as post-treatment Lyme encephalopathy).

In her book Lyme Brain, Nicola McFadzean Ducharme, ND, references studies in which Borrelia burgdorferi spirochetes were found in the brains of Alzheimer’s patients. While many Alzheimer’s patients don’t have Lyme, and many Lyme patients won’t develop Alzheimer’s, the studies show both how easily Lyme bacteria can cross the blood brain barrier, and how easily their presence can be misdiagnosed as dementia or Alzheimer’s when a chief symptom is memory loss.

The extent to which a patient’s memory is affected depends largely on their response to treatment.

When I started antibiotic therapy, some of my neurological systems worsened at first, as I experienced Herxheimer reactions, and the antibiotics chased those clever spirochetes deeper into my brain. After a couple months, my brain fog decreased, I had better concentration, and my memory improved. Sticking to an anti-inflammatory diet and taking supplements to help rid my brain of neurotoxins also helped. I learned to pace myself and to stay away from overstimulating activities (like big movie theaters or fireworks shows) that rile up my neurological symptoms, including memory loss.

Luckily, my long-term memory was never affected, which is a blessing as a writer. But while my short-term memory problems have improved, they are not fully gone. I especially notice them now when I am over tired or over worked. During those periods, I might leave someone a voicemail in the morning and then leave a similar message later in the day, forgetting about the first. I find myself asking friends, “Did I already tell you this story?” I’m hyper-aware of the deficit, but friends and family assure me that my lapses are relatively infrequent. Rest, quiet time away from screens, and relaxation usually have me back in “working order” in just a couple days.

If you are in an acute stage of neurological tick-borne illness, it’s possible that you’ve read this post and forgotten what it said; that you lost track of where you were whiling reading; or that you’ll tell someone about what you read more than once. Know that you’re not alone, and that with proper treatment through a Lyme Literate Medical Doctor (LLMD) and good self-care, a time will come when everything will seem much clearer.

[1] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press (2018), 314.

[1] McFadzean Ducharme, Nicola, ND. Lyme Brain. California: BioMed Publishing Group, LLC (2016), 15-16.

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jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email: lymewarriorjennifercrystal@gmail.com

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Category:

Alzheimer's, Inflammation, Lyme, Psychological Aspects, research, Supplements

Can You Have Lyme Disease & Not Know it?

https://danielcameronmd.com/can-you-have-lyme-disease-and-not-know-it/

CAN YOU HAVE LYME DISEASE AND NOT KNOW IT?

Ask the Lyme Doc series explores some of the most commonly asked questions about Lyme disease and other tick-borne illnesses. Individuals can have Lyme disease and not know it for years, mistakenly attributing their symptoms to other illnesses or being misdiagnosed. This edition explores the question: How long can you have Lyme disease without knowing it?

By

There are several published papers that address the question: Can you have Lyme disease and not know it?  Logigian and colleagues described chronic neurologic Lyme disease patients who were ill for up to 14 years prior to being diagnosed. Their symptoms included fatigue, poor memory, a sleep disturbance, headaches, lightheadedness, and joint pain.1 

Fallon and colleagues described Lyme disease patients who had been misdiagnosed on average for 2 years with a psychiatric disorder. They were initially presumed to suffer from “paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.”2 how-long-can-you-have-Lyme-disease-without-knowing-it

Another study by Fallon found that Lyme disease patients with Lyme encephalopathy were ill an average of 2 years before being diagnosed.3

Cases with persistent Lyme disease symptoms

I described cases of Lyme disease patients who had been sick for 6 to 8 years in a paper in the JournalEvaluation Clinical Practice.4 Four of the individuals were included in a consecutive case series of 100 Lyme disease patients.  All patients were positive for Lyme disease by 5 or more bands on a IgG Western blot test.

  • Case 1: A 35-year-old man presented with an erythema migrans rash. He was tested one week after the rash but never re-tested.  He was ill for 8 years before diagnosed and treated.
  • Case 2: A 26-year-old girl initially was diagnosed with Epstein Barr and strep infection. Her tonsils were subsequently removed. She was ill for 8 years before being diagnosed and treated.
  • Case 3: A 57-year-old woman had a tick bite followed by a swollen right knee.  Her swollen right knee was diagnosed as a meniscus tear.  She was ill for 6 years before being diagnosed and treated.
  • Case 4: A 16-year-old boy was diagnosed with Bell’s palsy. He did poor in school. He was ill for 6 years before being diagnosed and treated.

How long can you have Lyme disease and know it?

Klempner described individuals who were ill an average of 4.7 years before they enrolled in a Lyme disease clinical trial, sponsored by the National Institutes of Health (NIH).5

Fallon described individuals with Lyme encephalopathy who were ill an average of 9 years before enrollment in a second NIH-sponsored treatment trial.3

Meanwhile, Aucott and Rebman described a group of patients with Lyme disease who failed a three-week course of doxycycline.  The patients’ remaining symptoms were attributed to post-treatment Lyme disease syndrome (PTLDS) rather than a persistent infection.6  “PTLDS may persist for >10 years in some patients with culture-confirmed early Lyme disease,” wrote Weitzner and colleagues.7

Related Articles:

6 reasons for delayed treatment of Lyme disease

Study finds: misdiagnosis and delayed diagnosis common for Lyme disease patients

Lyme disease can lead to long-term sequelae

References:
  1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. Nov 22 1990;323(21):1438-44. doi:10.1056/NEJM199011223232102
  2. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. Nov 1994;151(11):1571-83. doi:10.1176/ajp.151.11.1571
  3. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. Mar 25 2008;70(13):992-1003. doi:10.1212/01.WNL.0000284604.61160.2d
  4. Cameron DJ. Consequences of treatment delay in Lyme disease. J Eval Clin Pract. Jun 2007;13(3):470-2. doi:10.1111/j.1365-2753.2006.00734.x
  5. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. Jul 12 2001;345(2):85-92. doi:10.1056/NEJM200107123450202
  6. Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne).2017;4:224. doi:10.3389/fmed.2017.00224
  7. Weitzner E, McKenna D, Nowakowski J, et al. Long-term Assessment of Post-Treatment Symptoms in Patients With Culture-Confirmed Early Lyme Disease. Clin Infect Dis. Dec 15 2015;61(12):1800-6. doi:10.1093/cid/civ735

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**Comment**

The PTLDS moniker is dooming patients.

Please see:  https://madisonarealymesupportgroup.com/2020/08/13/slyme-an-interview-we-need-to-drop-the-term-ptld-like-a-bad-habit/

By stating that only 10-20% go on to suffer debilitating symptoms, public health ‘authorities’, the media, and researchers ignore a much larger percentage (30-40%) who were diagnosed and treated late.  Adding the groups together reveals a whopping 60% or more that suffer long-term symptoms.  

PTLDS is also misleading in that it ignores persistent chronic infection.

Personally, I’m eternally grateful to our doctor who continued to treat both my husband and I with extended antimicrobials.  I hesitate to think where we would be.  I’m also thankful to report this treatment philosophy has restored our health.  I consider us in remission.  

We are far from alone.

Accepting the PTLDS moniker ignores the Peer-Reviewed Evidence of Persistence of Lyme.

Words and definitions matter.  Agreeing and going along with the PTLDS moniker ignores science showing persistent/chronic infection, and that’s a BIG DEAL.

Category:

Lyme, Psychological Aspects, research

Abdominal Pain in Child with Lyme

https://danielcameronmd.com/lyme-disease-manifests-abdominal-pain-child/  Podcast Here

LYME DISEASE MANIFESTS AS ABDOMINAL PAIN IN A YOUNG CHILD

lyme-disease-abdominal-pain

Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. In this podcast, I will be discussing the case of a 9-year-old boy who presented with abdominal pain as his first symptom of Lyme disease and the subsequent onset of attention deficit and ataxia (or difficulty in walking).

By

I first read about this case by Savasta and colleagues in the Italian Journal of Pediatrics.1

There are a growing number of signs and symptoms of Lyme disease in children. Savista and colleagues describe the 9-year-old child as having a one-year history of “abdominal pain, progressive poor scholastic performance and gait disturbance.”

At age 8, the boy had been hospitalized for severe abdominal pain and underwent extensive testing. But results were negative. His abdominal pain remitted over the next two months.

One year later, the boy became ill again with new symptoms. “He experienced learning difficulties with attention deficit and irritability, in addition, he developed difficulty in walking,” wrote the authors.  “When he was admitted to our Department he presented with ataxic gait, difficulty in speaking and attention deficit.”

The child was diagnosed with abdominal neuroradiculopathy. “Although not confirmed by nerve conduction studies, the clinical characteristics of the pain, the exclusion of other causes, the diffuse spinal roots enhancement on MRI and the additional confirmation of peripheral neuropathy are highly suggestive for abdominal neuroradiculopathy as symptom of onset of the disease,” the authors wrote.

“We observed ataxic gait, learning difficulties with attention deficit and irritability, signs and symptoms reflecting bacterial involvement of central nervous system,” the authors wrote.

Diagnosis and Treatment

Additional laboratory and radiological findings confirmed the diagnosis of late Lyme disease.

The boy was treated with 3 grams of intravenous ceftriaxone for 3 weeks, followed by an additional 3-week course of oral amoxicillin.

The treatment was prolonged “considering the disseminated and long-lasting illness,” the authors wrote.

They explain that in hindsight, “Indeed, a thorough past medical history collection evidenced that the onset of abdominal pain started 2 weeks after a tick-bite episode occurred during a walk in the wood.”

Three months after treatment, the boy’s gait and scholastic performance had improved and resolved completely after one year. A repeat of his spinal tap showed marked improvements.

The authors concluded the abdominal pain was due to painful radiculopathy.  Painful radiculopathy leading to abdominal pain has previously been seen in adults but not children.

They suggest that abdominal radiculitis, “although extremely rare, could be the first manifestation of early Lyme neuroborreliosis in pediatric patients.”

The authors did not address whether the abdominal pain was associated with autonomic dysfunction.

This case report highlights the importance of considering “Lyme disease in the differential diagnosis of abdominal pain of unknown origin in children, especially in countries where the infection is endemic,” the authors wrote.

This podcast addresses the following questions:

  1. Have you seen abdominal pain from Lyme disease in your practice?
  2. What types of abdominal pain have you seen in your Lyme disease patients?
  3. What is abdominal neuroradiculopathy?
  4. Abdominal pain can have many causes and is quite common in children. So, at what point do you consider Lyme disease in the differential diagnosis of a child with abdominal pain?
  5. What is the importance of the tick bite?
  6. What is the significance of the ataxic gait, irritability and learning difficulties?
  7. Will Lyme disease patients tolerate antibiotics?

Editor’s note:  I have had Lyme disease patients with abdominal pain associated with autonomic dysfunction in my practice.  Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Savasta S, Fiorito I, Foiadelli T, et al. Abdominal pain as first manifestation of lyme neuroborreliosis in children, case report and review of literature. Ital J Pediatr. Nov 23 2020;46(1):172. doi:10.1186/s13052-020-00936-y

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Category:

Lyme, Psychological Aspects, research

May Lyme Awareness Talk, 2021

http://

May 5, 2021

Lyme Awareness Talk

According the the Centers for Disease Control and Prevention (CDC), the average number of Lyme disease cases has more than doubled over the last decade.  In this presentation, Alicia Cashman from the Madison Lyme Support Group discusses tick-born illness, why it’s so difficult to obtain help, symptoms, prevention, and real life experience of patients.  The program was made possible through funding from the Friends of the Oregon Library.

Slide 1: Lyme Disease a 21st Century Pandemic
Slide 2: Why should we care about Lyme disease:
Slide 3: The History of Lyme disease:
Slide 4:  What is Lyme disease?
  • The CDC/NIH/IDSA accepted narrative
  • Reality
Slide 5: Pleomorphism (Lyme shape-shifts)
Slide 6: Video of a spirochetal cluster grown from a sick patient’s blood
Slide 7: Polymicrobialism (There are often other infections involved)
Slide 8:  How is Lyme Transmitted?
  • The CDC accepted narrative
  • Reality
Slide 9:  Congenital Lyme – is real
Slide 10: How is Lyme diagnosed?
Slide 11:  Symptoms of Lyme disease
  • CDC accepted narrative
  • Reality
Slide 12: Lyme disease signs and symptoms explained by Dr. Aucott of Johns Hopkins
  • Patients can jump to stage 3 quickly and bypass the other stages.  I give the example of the little girl who went out to play, got a tick bite above her eye and within 4-6 hours couldn’t walk or talk.
  • Many never see the tick or the rash
  • While the rash is diagnostic for Lyme (if you have the rash, you have Lyme – no testing required), you may still be infected even if you don’t have the rash. Most doctors are uneducated, don’t know what the rash looks like, and mistakenly tell people they got a spider or other bug bite.  The rash can also be irregular: https://madisonarealymesupportgroup.com/2020/07/18/misdiagnosis-of-lyme-caused-rash-can-have-potentially-fatal-consequences/
Slide 13: Why are definitions important?
  • Organism
  • Transmission
  • Treatment
Slide 14:  Tick Prevention
Slide 15: Willy Burgdorfer, the “discoverer” of Lyme
Slide 16: New Treatments for Lyme disease
Please remember that most patients are infected with numerous infections.  Treatment should reflect this as research shows patients fighting numerous infections simultaneously have more severe symptoms for a much longer duration.
Slide 17: Hollywood Stars infected with Lyme

Category:

Activism, Babesia, Bartonella, Biofilm, Lyme, Prevention, Psychological Aspects, research, Testing, Ticks, Transmission, Treatment

Lyme Symptoms: Nervous System Inflammation

https://www.globallymealliance.org/blog/lyme-symptoms-nervous-system-inflammation

Lyme Symptoms: Nervous System Inflammation

by Jennifer Crystal on April 26, 2021

<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" >Lyme Symptoms: Nervous System Inflammation</span>

We patients must remember that Lyme is an inflammatory disease. Flare-ups often involve increased inflammation.

by Jennifer Crystal

Last week I had an incredibly busy schedule. I did research, had several long conversations over Zoom, taught a class, and wrote a lot. The work required a good amount of mental energy, or “spoons”. I also happened to have a physically busy week, running around doing errands and going to doctor’s appointments, as well as meeting friends for socially distanced walks.

But what Lyme patients need to do and what we want to do don’t always match up.

By Thursday evening, my brain felt as if it was filling with cotton, a pressure I remember well from my acute days with Lyme disease, ehrlichiosis, and babesiosis. This should have been my cue to stop and rest. What I really needed to do was darken the lights, put on some soft music, and relax. But what Lyme patients need to do and what we want to do don’t always match up. In this case, I wanted to relax by watching a favorite show, something I’d been looking forward to as a reward all week. And so I watched. Big mistake. Halfway through the program, my feet got very hot. They weren’t under a blanket. It was cool in the room. But my feet felt like they were on fire.

Burning extremities are a common manifestation of neurological Lyme disease. While my own infections are in remission, pushing myself physically and mentally can cause flare-ups. The sensory overload of the TV show was the proverbial straw that broke the camel’s back. My nervous system was inflamed, and needed a cool down, stat. What exactly causes nervous system inflammation in tick-borne illness?

As Richard I. Horowitz, MD explains in How Can I Get Better? An Action Plan for Treating Resistant Lyme & Chronic Disease, “Inflammation underlies the symptoms in many neurological diseases. In a study published in 2007 in Lancet Neurology, researchers reported that the neurological syndromes associated with Borrelia burgdorgferi are also associated with inflammation in the central nervous system, in particular amyloid metabolism. Amyloids are proteins that aggregate and change the structure of cells, damaging them.” He goes on to say, “Amyloid is just one of several neurotoxins: substances that can damage or kill off the brain’s neurons that are produced by inflammation and can alter the normal activity of the cells of the central nervous system…Neurotoxins and inflammation both can alter the normal activity of the nervous system.” [i]

For patients, this altered activity can manifest as the peripheral neuropathy (burning extremities, numbness, tingling) and “ brain fog” I experienced, as well as headaches, memory loss, confusion, anxiety, depression, sleep disturbances, and more. We patients must remember that Lyme is an inflammatory disease. Flare-ups often involve increased inflammation. That’s easy to remember when you’re in an acute stage and your entire body hurts or you’re getting systemic hives. For those of us who are doing well, we can easily forget how quickly inflammation can rev back up.

Last week was a sobering reminder for me. After watching my TV show, I had crazy dreams. When I woke up, I texted a friend, “I feel like I’ve been electrocuted.” To quiet my nervous system, I relied on tricks that have helped in the past: I went for an integrative manual therapy appointment, where my practitioner did some cranial sacral massage. I increased my consumption of anti-inflammatory foods. I stayed away from screens and even reading. That weekend, I wanted to go for a walk, but my body was too tired, so instead of pushing it as I had all week, I just stayed home. By Monday, I felt much better.

For those in acute stages of infection, increased inflammation may be a sign of needing additional, or different, antibiotics. Your Lyme Literate Medical Doctor (LLMD) may want to add an anti-inflammatory medication to your regimen. They may recommend certain supplements that can reduce inflammatory cytokines. Only you and your doctor can decide what treatment will work best for your specific case of inflammation, but everyone can benefit from rest, hydration, good sleep hygiene, and an anti-inflammatory diet. I’m glad to report that this past week was much better. My body and brain speak up when I’ve pushed them too far. Though I don’t always heed the messages quickly enough, I do heed them at all, and that’s made recovery from nervous system inflammation faster and better.

[i] Horowitz, Richard I., MD. How Can I Get Better? An Action Plan for Treating Resistant Lyme & Chronic Disease. New York: St. Martin’s Press, 2017 (183-4).

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Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her using her email.

Email: lymewarriorjennifercrystal@gmail.com

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**Comment**

Ms. Crystal wrote about getting the first COVID injection in March, and that she struggled with, “slight nausea and achiness. This feeling continued through the next morning. By about 10:00 a.m. on Tuesday, I felt like I had a mild flu: chills, achiness, headache, and fatigue. I did not run a fever.”

She also stated the symptoms prevented her from working the rest of the day.

If she received the 1st injection in March, that means the second shot,  according to the CDC, would have been given 21, or 28 days or later – but not before.  They also state:

Side effects after your second shot may be more intense than the ones you experienced after your first shot. 

I wonder if she’s considering the fact this injection may be partially or fully to blame for her issues in April.

We’ve been falsely told these injections are “safe and effective,” despite the warnings of numerous doctors and researchers to the contrary.  In previous animal studies utilizing this technology, EVERY SINGLE ANIMAL DIED. We also know people are still contracting COVID-19 after receiving all the injections, clearly demonstrating they don’t stop you from getting it. They also don’t stop you from transmitting it to others – so getting the injections because you visit grandma doesn’t hold any water. A researcher has warned about the unsafe epitopes.

Food for thought.

And please remember the plethora of effective treatments being censored or banned:

Category:

Babesia, Inflammation, Lyme, Psychological Aspects, vaccines, Viruses