Archive for the ‘research’ Category

PTLD as a Model for Persistent Symptoms in Lyme Disease

The following petition update by Lyme advocate Carl Tuttle is about this recent publication:  https://www.frontiersin.org/articles/10.3389/fmed.2020.00057/full In it, the authors discuss the subgroups of those who go on to develop persisting symptoms, as well as the continuing controversy in medicine over this disabling disease(s). The authors present both sides of the fence and state:

However, ILADS CLD is a symptom-based definition and therefore ongoing infection is difficult to assess in individual patients with no currently available biomarker test, and given the large degree of symptom overlap between CLD and other illnesses.

This is important, as the IDSA on the other side of the fence wants to define everything by testing – which research has proven to be abysmal. It’s important for medical professionals to remember that the criteria for reporting Lyme disease is extremely stringent and that even the CDC states diagnosis should be clinical.  Their own website indicates that doctors should be looking for signs, symptoms, and exposure.  Then, it says “results of laboratory testing when indicated.” https://www.cdc.gov/lyme/diagnosistesting/index.html  Regarding testing, you’d have to have your head under the sand to not know it misses over half of all cases, and not to mention takes precious time to develop antibodies for the test to even pick it up – which means the patient, if it’s Lyme, will worsen and be added to the ever growing large group with persisting symptoms. https://madisonarealymesupportgroup.com/2018/10/12/direct-diagnostic-tests-for-lyme-the-closest-thing-to-an-apology-you-are-ever-going-to-get/

“Insanity is doing the same thing over and over and expecting different results,” so why on earth would a doctor WAIT when the signs, symptoms, and exposure indicate a Lyme disease infection?

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25808085?

Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease

FEB 26, 2020 — 

Today’s letter…….

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, jaucott2@jhmi.edu
Cc: (98 Undisclosed recipients)
Date: February 26, 2020 at 9:44 AM
Subject: Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease

Frontiers in Medicine

Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease
Alison W. Rebman and John N. Aucott*
https://www.frontiersin.org/articles/10.3389/fmed.2020.00057/full
Feb 26, 2019

Johns Hopkins Lyme Disease Clinical Research Center
At Greenspring Station  Joppa Concourse
2360 W. Joppa Rd, Suite 320
Lutherville, MD 21093
Attn: John N. Aucott, M.D.

Dr. Aucott,

The content of this letter should not be misconstrued as disrespectful.

As someone whose entire family with firsthand experience of the late stage disabling effects of Lyme, it becomes crystal clear when reading your manuscript that we don’t know how to treat Lyme disease. And yet, state medical boards will go after those clinicians who are attempting to help these patients: (Past IDSA president Paul Auwaerter testified against this doctor)

Before the Virginia Board of Medicine
In RE: Leila Haddad Zackrison, M.D.

Order of Summary Suspension
http://www.dhp.virginia.gov/Notices/Medicine/0101045689/0101045689Order09122019.pdf

I stopped reading your publication at page three simply because it’s the same information that we have seen over and over and over and over again for the past four decades.

The suppression of a mountain of evidence identifying persistent infection after extensive antibiotic treatment has misclassified this disease as a low-risk and non-urgent health threat.

The deliberate avoidance of the horribly disabled allows the CDC to ignore public outcry:

From your publication:

“….the CDC does not track disease outcomes or cases of persistent symptoms (34). Estimating the population-level prevalence of persistent symptoms following Lyme disease is challenging due to this lack of standardization or consensus in operationalizing a case definition.”

If we’re not counting the number of lives ruined by the disease we can continue the well-established racketeering scheme indefinitely.

Until those responsible for this health disaster are removed from positions of authority we will have another decade of unimaginable pain and suffering.

We have a public health emergency that requires a response on the level of a Manhattan Project [1] as patient testimony all across America (and the globe) is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin.

We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control whatsoever; a public health disaster misclassified as a simple nuisance disease.

Lyme disease is a 21st Century incurable plague hidden in plain site as we are dealing with an antibiotic resistant/tolerant superbug and it is time to acknowledge the severity of this crippling disease.

Respectfully Submitted,

Carl Tuttle
Lyme Endemic Hudson, NH

Reference:

1. Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic
Raphael B. Stricker, Lorraine Johnson

Published: January 02, 2014 DOI: 10.1371/journal.ppat.100379

http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796

In summary, preliminary studies from the CDC indicate that the Lyme disease epidemic has reached an unprecedented level with at least 300,000 people and as many as one million people, a majority of them women and children, diagnosed with Lyme disease each year in the United States. The staggering magnitude of the epidemic should prompt the CDC to show leadership in developing new guidelines for the diagnosis and treatment of Lyme disease. A coordinated “Manhattan project” similar to the attack mounted against the HIV/AIDS epidemic is urgently needed to address the serious worldwide threat of Lyme disease.

_______________

**Comment**

While Rebman and Aucott respectfully present both sides of the controversy, I agree with Tuttle that nothing has been done for the sickest patients.  I also realize from a researcher’s perspective that the PTLDS group is the easiest to study as the parameters are extremely narrow and defined.  The problem is, the sickest patients don’t fit into this group yet continue to suffer – with nobody studying them.  

We desperately need researchers to dig into this group of patients that is growing exponentially by the minute:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

According to microbiologist Holly Ahern,

60% go onto develop chronic/persistent symptoms.
That’s nothing to sniff at.

Global Prevalence of Toxoplasmosis in Cats. A Systematic Review & Meta-Analysis

https://parasitesandvectors.biomedcentral.com/articles/10.1186/s13071-020-3954-1?

Review, Open Access, Published:

The global serological prevalence of Toxoplasma gondii in felids during the last five decades (1967–2017): a systematic review and meta-analysis

Mahbobeh Montazeri, Tahereh Mikaeili Galeh, Mahmood Moosazadeh, Shahabeddin Sarvi, Samira Dodangeh, Javad Javidnia, Mehdi SharifAhmad Daryani

Abstract

Background

Felids (domestic and wild cats) are important in the epidemiology of the parasite Toxoplasma gondii because they are the only hosts that can excrete the environmentally resistant oocysts. We conducted a systematic review and meta-analysis to estimate the global prevalence of T. gondii in species of the family Felidae.

Methods

We searched seven databases (PubMed, Embase, Google Scholar, ScienceDirect, Scopus, Proquest and Web of Science) for studies reporting seroprevalence of T. gondii in felids from 1967 to 31 December 2017. A total of 217 published papers, containing 223 datasets were eligible for inclusion in the meta-analysis, comprised 59,517 domestic and 2733 wild cats from 1967 to 2017.

Results

The pooled global T. gondii seroprevalence was estimated to be 35% (95% CI: 32–38%) and 59% (95% CI: 56–63%) in domestic cats and wild felids, respectively, using random effects model. The seroprevalence was higher in Australia and Africa where the T. gondii seropositivity in domestic cats was 52% (95% CI: 15–89%) and 51% (95% CI: 20–81%), respectively. The lowest seroprevalence was estimated in Asia 27% (95% CI: 24–30%). The seroprevalence values for T. gondii in wild felids were 74% (95% CI: 62–83%) in Africa, 67% (95% CI: 23–111%) in Asia, 67% (95% CI: 58–75%) in Europe and 66% (95% CI: 41–91%) in South America.

Conclusions

Our study provides the global prevalence of T. gondii in species of the family Felidae and is a source of information to aid public health workers in developing prevention plans.

_________________
**Comment**
The following excerpt from the study is important:
Based on formal reports, over one billion people in the world are estimated to be infected with T. gondii[3], which is transmitted mainly by ingestion of food, water, vegetables and fruits contaminated with sporulated oocysts shed from cats or ingesting tissue cysts from raw or undercooked meat [1]….The Centers for Disease Control and Prevention (CDC) reported that toxoplasmosis is the second most common cause of death due to food-borne diseases.
T. gondii has been found in tickshttp://europepmc.org/article/med/25780833
Here it was found in 64.91% of all examined ticks.
Transmission by ticks has been questioned with mixed results:  https://scialert.net/fulltext/?doi=jp.2015.142.150#1508959_ja
Excerpt:
Nymphs of Ixodes ricinus are most susceptible to infection with T. gondii and they reported that the role of ticks in transmitting of toxoplasmosis should be considered in further investigations. They also added that Toxoplasma artificially (intracoelomatically) introduced into the organism of I. ricinus females can penetrate and multiply in hypoderma, salivary glands, peritracheal connective tissue and muscular tissue. Moreover, Jagow and Hoffmann (1970) found that Toxoplasma lived in Nymphs and adults of Ornithodoros moubata up till 10 and 2 days, respectively. They also found transmission was unsuccessful either through sucking or with the next stage of the same ticks or through the F1-generation of the ticks infected with Toxoplasma. Whereas, Gidel and Provost (1965) isolated Toxoplasma gondiifrom to the genus Amblyomma parasiting a bovine in Centre African Republic by inoculation into rabbits and guinea pigs and proved pathogenic for mice.
Prudence would err on the side of caution and transmission of T. gondii by ticks should be highly suspected.

For more:  https://madisonarealymesupportgroup.com/2016/05/21/toxoplasmosis/ T. gondii is responsible for about 1/5 of schizophrenia cases.  

https://madisonarealymesupportgroup.com/2019/12/31/psychiatric-disorders-are-infectious-agents-to-blame/

https://madisonarealymesupportgroup.com/2018/08/01/risky-business-linking-t-gondii-entrepreneurship-behaviors/

https://madisonarealymesupportgroup.com/2019/04/06/toxoplasmosis-outbreak-due-to-undercooked-deer-meat-from-illinois/

And lastly, I’ll never forget this information on how parasites affect human behavior by Dr. Klinghardt, which I found here:  http://www.betterhealthguy.com/a-deep-look-beyond-lyme

  • Parasite patients often express the psyche of the parasites – sticky, clingy, impossible to tolerate – but a wonderful human being is behind all of that.

  • We are all a composite of many personalities. Chronic infections outnumber our own cells by 10:1. We are 90% “other” and 10% “us”. Our consciousness is a composite of 90% microbes and 10% us.

  • Our thinking, feeling, creativity, and expression are 90% from the microbes within us. Patients often think, crave, and behave as if they are the parasite.

  • Our thinking is shaded by the microbes thinking through us. The food choices, behavioral choices, and who we like is the thinking of the microbes within us expressing themselves.

  • Patients will reject all treatments that affect the issue that requires treating.

  • Patients will not guide themselves to health when the microbes have taken over.

With this information in mind, it’s quite clear how Lyme/MSIDS is such a complex disease as many are dealing not only with Lyme but other coinfections including parasites which are either directly transmitted by a tick or activated due to a trigger and a dysfunctional immune system.

Which Treatment Guidelines Should You Follow For Lyme Carditis?

https://danielcameronmd.com/treatment-guidelines-lyme-carditis/

WHICH TREATMENT GUIDELINES SHOULD YOU FOLLOW FOR LYME CARDITIS?

Lyme carditis occurs when Borrelia burgdorferi spirochete penetrate the pericardium (a membrane that encloses the heart) or myocardium (muscular tissue of the heart). The infection triggers an inflammatory response, typically causing atrioventricular (AV) conduction abnormalities, such as a first, second or third-degree heart block.

In their article Lyme Carditis: A Rare Presentation of Sinus Bradycardia Without Any Conduction Defects, Grella and colleagues present “a unique case of Lyme carditis, without the classical findings of Lyme disease [such as a rash] or common EKG findings of AV conduction abnormalities.”¹

A 56–year-old man was admitted to the emergency department with lightheadedness and chest pain. An EKG revealed sinus bradycardias. Western blot test results for Lyme disease were positive and included IgG bands 18, 28, 39, 41, 45, 58, 66, 93 and negative for IgM (band 23 was positive). The patient was given a 7-day course of IV ceftriaxone.

However, “he continued to have persistent bradycardia with his heart rate dropping to 20 to 30 beats per minute throughout the night,” writes Grella. “Additionally, he had several sinus pauses while sleeping, with the longest lasting for 6.1 seconds.”

The man required further treatment with a pacemaker and a 3-week course of IV ceftriaxone.

At his one-month follow-up appointment, he was symptom-free.

The authors note that Lyme disease patients’ presentations may differ. “A gray zone exists in regards to the treatment of Lyme disease because every patient does not present with the characteristic rash and symptoms of Lyme disease.”

Furthermore, as Grella points out, there are different treatment guidelines for Lyme disease.

“The Infectious Diseases Society of America (IDSA) recommends that patients be started on a short course of antibiotics as the persistent infection is infrequent or non-existent.”

“The International Lyme and Associated Diseases Society (ILADS) recommends the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) system. This system emphasizes that a prolonged course of antibiotics be required, keeping in mind the high failure rates from a short course of antibiotics and the high prevalence of disseminated disease in a large number of cases.”

Meanwhile, Lyme carditis treatment varies between patients, as well.

“Patients with Lyme carditis who do not have high-grade heart block are managed conservatively with oral antibiotics.”

“Patients with a high-grade heart block should be hospitalized, closely monitored, and treated with IV ceftriaxone 2 grams or IV penicillins for second/third-degree AV block or prolonged for PR interval > 300 ms.”

Other institutions offer different approaches. “The European Federation of Neurological Societies (EFNS) recommends ceftriaxone or cefotaxime for 2 weeks as the standard of care in acute Lyme carditis.”

The authors conclude: “A high clinical suspicion of Lyme carditis is required when someone from a Lyme endemic region presents with unexplained cardiac symptoms and has EKG findings suggestive of carditis.”

Editor’s note: The length of treatment for this patient was consistent with the ILADS guidelines, as the man had failed the initial treatment.

Editor’s disclosure: I am co-author of the ILADS treatment guidelines.

References:
  1. Grella BA, Patel M, Tadepalli S, Bader CW, Kronhaus K. Lyme Carditis: A Rare Presentation of Sinus Bradycardia Without Any Conduction Defects. Cureus. 2019 Sep 2;11(9):e5554

____________________

For more:  

https://madisonarealymesupportgroup.com/2020/01/12/broad-range-of-presentations-for-lyme-carditis-cases/

https://madisonarealymesupportgroup.com/2019/11/29/increasing-burden-of-lyme-carditis-in-united-states-childrens-hospitals/

https://madisonarealymesupportgroup.com/2019/02/21/diagnosis-treatment-of-lyme-carditis/

https://madisonarealymesupportgroup.com/2019/11/04/suspect-lyme-carditis-start-empiric-antibiotics-case-report-suggest-and-lyme-carditis-is-not-rare/

https://madisonarealymesupportgroup.com/2018/07/09/with-unexpected-death-autopsies-should-look-for-lyme-carditis/

https://madisonarealymesupportgroup.com/2019/05/15/lyme-carditis-presenting-as-atrial-fibrillation/

https://madisonarealymesupportgroup.com/2020/02/17/lyme-carditis-presenting-as-sick-sinus-syndrome/

https://madisonarealymesupportgroup.com/2019/12/21/patients-can-die-when-lyme-carditis-is-not-treated/

Hugging it Out: How Physical Connection Helps Us Heal

https://globallymealliance.org/hugging-it-out-how-physical-connection-helps-us-heal/

by Jennifer Crystal

RESEARCH SHOWS THAT HUGGING IS GOOD FOR OUR HEALTH

I remember vividly a scene from the medical show “Grey’s Anatomy” that aired years ago. All that happened in the scene was that a doctor grew overwhelmed and cried, eventually having a panic attack. Slowly, two other doctors embraced her from either side and held her tight. When a fourth doctor came in and asked what was going on, one said, “We’re hugging it out.”

That scene struck me because I saw how the simple act of human touch quelled a serious physiological reaction to emotional stress. Within minutes, the upset doctor’s sobs subsided and her breathing slowed. The original problem that had set off her distress wasn’t gone but her fight-or-flight reaction was.

I have thought of that scene many times during my decades-long journey with chronic illness. So much of that time was spent alone. Patients battling tick-borne or other long-term illnesses are often bedridden with little to occupy their minds besides worry and pain. They may see family members or roommates in the evenings or on weekends, but the endless days of lying in bed can get downright lonely. There were so many times when I thought, I just want a hug.

And there were many times when I got one. When I was convalescing at her home, my mom gave me a hug every day when she came home from work. Friends hugged me when they came to visit. They sent me funny emails and left me voicemails that made me laugh. I sometimes felt hugged even when I didn’t have physical connection with someone.

But I also often felt desperately alone. Lyme disease can be especially isolating because on top of the loneliness that comes from being bedridden, patients often feel misunderstood or invalidated by the people closest to them and by medical professionals. One night I woke from a terrible nightmare with my arms wrapped around myself in a self-hug.

As the “Grey’s Anatomy” scene displayed, physical touch is important for everyone, not just for the infirm. Research shows that hugging is good for our health. In an NBC news report, Michael Murphy, Ph.D., a research associate at the Laboratory for the Study of Stress, Immunity, and Disease in the Department of Psychology at Carnegie Mellon University said, “…touch deactivates the part of the brain that responds to threats, and in turn, fewer hormones are released to signal a stress response, and your cardiovascular system experiences less stress.” Human touch can also stimulate the feel-good hormone oxytocin.[i]

Moreover, touch can help our physical wellness, too. A study by Dr. Murphy’s colleagues, also mentioned in the NBC news report, found that “those who felt socially supported and were hugged more often also experienced less-severe signs of illness.” Physical touch can also boost immunity.

Family therapist Virginia Satir is known for her quote, “We need 4 hugs a day for survival. We need 8 hugs a day for maintenance. We need 12 hugs a day for growth.”  That’s a tall order for a bedridden patient, but there are still ways to get the connection we need. We can ask for or initiate hugs with people with whom we are close. Caregivers and friends can think about giving more hugs to their loved ones who are ill (the benefits go both ways!). The touch aspects of therapies like integrative manual therapy or light massage can also be soothing. And for those who aren’t comfortable with physical touch or who live alone, simply connecting with others—whether it’s through social media, email, an online or in-person support group—can simulate the benefits of hugging and make you feel less alone.

Hugging won’t cure illness, or emotional stress, or the woes of the world, but it can lay the groundwork for subsequent healing. In our technological age, it would behoove us to follow the advice of the old song: “Reach out and touch someone.”

1 https://www.nbcnews.com/better/pop-culture/health-benefits-hugging-ncna920751


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.

 

___________________

For more:  https://madisonarealymesupportgroup.com/2020/02/20/lyme-mental-health-discussion/

https://madisonarealymesupportgroup.com/2020/01/03/lyme-mind-podcast-dr-leigner-dr-horowitz/

https://madisonarealymesupportgroup.com/2019/09/17/ignoring-psychiatric-lyme-disease-at-our-peril/

https://madisonarealymesupportgroup.com/2018/06/04/ld-diagnosis-took-forever-because-of-mental-health-stigma/

Zoonotic Diseases & Why We Are So Interested in Bats (Bartonella, Mycoplasma, & Coronavirus)

https://www.galaxydx.com/zoonotic-disease-and-one-health-with-bat-pathogens/

Zoonotic Diseases and Why We Are So Interested in Bats