REMINDER: Please mark your calendars for the upcoming November Madison Lyme Support Group Meeting.
**Note the new location**
For future reference, anytime you want to know upcoming meeting times, go to the upper right hand corner on the website and click on the “meetings” tab.
TOUCHED BY LYME: Helping families with Lyme re-capture their joy
Nov. 4, 2021
Gloria Kim, a mother of three from New Jersey, fell into the Lyme world when her son was bitten by a tick at a young age.
As a result, her family has been dealing with chronic Lyme and co-infections for the last 14 years. And as she learned early on, Lyme disease affects the whole family—not just the ones who are sick.
“As a caretaker, I worked tirelessly to keep my son alive and was constantly in a state of despair, isolation and survival,” she recalls.
“As much as I wanted to be there for my other two healthy children and husband, the struggle of saving my son overwhelmed me and I lost myself.”
She understands the “difficulty, frustration, sadness and anger” of being a Lyme caregiver, she says.
To help others, she has created a weekly online support group to help bring connection and community to people in this situation–and to help them rediscover joy.
One of the things that Gloria said really helped her and her family was to find ways to laugh together. Here’s something she recently posted on her Facebook page.
Add this to your toolbox to help you heal from Lyme.
Melissa Wright is the Director of Patient Engagement & Outreach for LymeDisease.org and Project Manager of MyLymeData.
She spoke at the recent Tick-borne Disease Diagnostics online event spons
Lyme is not recognized as a possibility in their area
Many patients do not present with a classic erythema migrans rash
The diagnostic testing for Lyme is flawed
View her presentation here:
Here’s the text of her remarks:
Hello everyone, my name is Melissa Wright and I am the Director of Patient Engagement & Outreach for LymeDisease.org and Project Manager of MyLymeData. I am happy to be with you today for the Tick-borne Disease Diagnostics Innovation Incubator, and have the opportunity to talk with you about the impact of diagnostic delays in the Lyme community.
Founded over 30 years ago, LymeDisease.org, is one of the oldest Lyme disease organizations in the nation. It is the largest and most trusted communications network for Lyme patients. Our mission is to harness the power of tens of thousands of patients to improve patient care and accelerate the pace of Lyme disease research. We do this through providing tools like our symptom checker, physician directory, and the MyLymeData patient registry and research platform with over 15,000 patients enrolled.
Today I’ll briefly discuss diagnostic issues with data from MyLymeData, the current testing and what we’re doing to push the needle
Using a diagram first developed by the Institute of Medicine (now the National Academy of Medicine) in its report “Improving Diagnosis in Health Care,” which identified different points along the path to diagnosis where things can go wrong and diagnosis can be delayed or missed. It has been modified to reflect the diagnostic issues we encounter in Lyme disease. For example:
Lyme is not identified as a possibility in (name your state)
Many patients do not present with a classic EM rash
And the diagnostic testing is flawed
Which leads to a large majority of patients being misdiagnosed.
In MyLymeData we found that 70% of those with late or chronic Lyme disease experienced years of diagnostic delays even though 45% had presented with early symptoms. It had taken the majority, 3 or more years to be diagnosed after seeing 5 or more doctors with 72% being misdiagnosed and likely unnecessarily treated for another disease.
So why the delay? In Lyme disease we know early diagnosis can be a ticket to recovery. 70-80% do become well. Unfortunately, a diagnosis of early Lyme disease is not so straight forward. A lot of the symptoms are not specific for Lyme disease and do occur in other illnesses. So, there’s a big emphasis on whether the patient has distinguishing factors.
– Was the patient exposed to an area where there are ticks that carry the disease? (Remember, no Lyme in name your state)
– Did the patient have a distinctive round rash that could have been caused by the bite of a tick. (only 34% of patients report having a rash)
– And were any blood tests positive? (flawed testing, with 37% receiving a false negative)
In regard to testing, we know during the first four to six weeks of Lyme infection, standard Lyme disease tests are unreliable because most people have not yet developed the antibody response that the test measures, and even later in Lyme the two-tiered testing is highly insensitive.
The chart (Stricker, Johnson 2010) illustrates the studies examining the testing. As you can see, the mean sensitivity for Lyme testing is 46%. This means 108 of every 200 cases is missed in Lyme compared to that of the highly sensitive testing for HIV/AIDS, which has a mean sensitivity of 99.5%, where only 1 in every 200 cases is missed.
Simply put, the likelihood of Lyme disease being diagnosed from a positive lab test is the equivalent of getting a heads or tails in a coin toss. This ultimately means many patients go undiagnosed.
Now everyone knows the saying there is power in numbers, but despite Lyme disease having 475,000 cases annually little has been done to advance Lyme testing or research.
According to research by Goswami, the number of clinical studies for Lyme disease trails behind leprosy–which has an incidence of less than 200 cases per year. So, Lyme disease should be thought of as a research disadvantaged disease that faces the same challenges that rare diseases face.
Patients are the most underutilized resource in medical research, and we are striving to bridge that gap.
The research cycle illustrated is derived from Groft’s work with rare diseases. His model suggests forming a patient registry that links with a biorepository—we are collaborating with the Lyme Disease Biobank here.
The registry helps to develop a research hypothesis—here we have published three peer-reviewed publications to better characterize the disease, assess patient reported outcomes, and analyze treatment effects among patient subgroups. The registry can then be used to help recruit patients. We have worked on recruiting for two clinical studies.
A team research approach will allow rapid knowledge generation to accelerate the pace of research–-leading to improved diagnostics, treatment and care.
Thank you for your time, I appreciate the opportunity to speak with you all today and I want to close by encouraging anyone not yet participating in MyLymeData to enroll.
In their article, “Lyme Carditis in Hospitalized Children and Adults, a Case Series,” Shen and colleagues compare, for the first time, the presentation, management, and outcomes of Lyme carditis in the pediatric versus adult populations.
The authors analyzed charts of pediatric and adult patients with heart block and a positive Western Blot test for Lyme disease, who were hospitalized at Maine Medical Center. The study included 10 children and 20 adults who were admitted for Lyme carditis between January 2010 and December 2018.¹ The children’s mean age was 12.4 years. The adult mean age was 41.4 years.
The case series found:
90% of the Lyme carditis patients were male, with 87% having no prior cardiac history.
All cases presented between June and October.
Of the 13 cases who noted symptom onset, 76% presented within 3 weeks of illness.
Out of 30 patients, 17 were evaluated at an outpatient facility. “Of these, a minority (41%) had Lyme disease suspected in the outpatient setting, and fewer (12%) were initiated on Lyme disease treatment.”
“Improved early recognition and treatment of Lyme disease may decrease Lyme carditis.”
Children with Lyme carditis were more likely to present with disseminated erythema migrans and fever. Otherwise, children and adults had similar symptom presentations, exhibiting predominantly presyncope and syncope.
“There was no statistical difference between pediatric and adult cases with regards to heart block type or other cardiac complications,” the authors write. “However, the most common heart block in pediatric cases was first-degree (40%) vs second-degree Mobitz type 2 in adult cases (55%).”
Adults were more likely to require a pacemaker (60%) compared with 20% of children. “Proportionately more adults needed temporary pacing,” the authors write, while “Children had shorter antibiotic durations…”
“… there is room for improving outpatient diagnosis and treatment of early Lyme disease, even in a high-incidence state like Maine.”
Out of the 30 cases, 27 had improved heart block, while 3 adults required a pacemaker at discharge. One patient died.
The authors point out that the majority of these cases were evaluated by an outpatient provider before carditis developed. However, only 41% of the patients were diagnosed with or suspected to have Lyme disease at that visit.
Furthermore, even fewer (12%) of those patients received appropriate antibiotics.
“Overall, there were no major differences seen between the presentations or outcomes of pediatric and adult Lyme carditis cases,” the authors write.
“Earlier diagnosis and treatment would likely have prevented carditis and the need for hospital admission,” the authors conclude.
“… there is room for improving outpatient diagnosis and treatment of early Lyme disease, even in a high-incidence state like Maine.”
Richard V Shen, Carol A McCarthy, Robert P Smith, Lyme Carditis in Hospitalized Children and Adults, a Case Series, Open Forum Infectious Diseases, Volume 8, Issue 7, July 2021, ofab140, https://doi.org/10.1093/ofid/ofab140
While the world has come to a screeching halt over a coronavirus, Lyme/MSIDS patients continue to suffer in silence, unbelieved. Patients deal with all of the above symptoms and much, much more, but are told that they are imagining it. Most are suffering with a multitude of pathogens, each with the ability to make them miserable, but together serve as a one, two, punch and you are out. Cases are wildly variable and very difficult to treat. The same medical establishment, led by the same corrupt public health‘authorities’ continue to follow an unscientific, biasednarrative that is slowly and painfully debilitating and killing people.
PCR HPV testing leads to >95% unnecessary colposcopic (cervical) biopsies on hundreds of thousands of healthy women each year. The PCR test appears to have just as high of a false positive rate for COVID.
Lyme testing, on the other hand, misses anywhere from 70–86% or more of patients.
Clinical presentation of Lyme disease in patients living in Germany
In their article, entitled “Neuropsychiatric and Psychological Symptoms in Patients with Lyme Disease: A Study of 252 Patients,” Hündersen and colleagues describe the clinical presentation, diagnostic process and treatment regimens for 252 Lyme disease patients. [1]
The authors collected data via an online questionnaire from 252 Lyme disease patients and a control group of 267 healthy individuals living in Germany to examine the clinical presentation, including neuropsychiatric and psychological symptoms.
The findings revealed that “Lyme disease can cause diverse psychological and neuropsychiatric symptoms. These include limitations in quality of life, sleep, attention, and memory, as well as depressive symptoms.”
Time to diagnosis
The majority of the patients were diagnosed with Lyme disease based on ELISA (53.2%), Western blot (43.7%), and lymphocyte transformation test results (41.7%).
Out of the 252 participants, nearly half (45.5%) recalled an erythema migrans rash, while 74% recalled a tick bite “that possibly triggered Lyme disease.”
It took approximately 8 years to receive a diagnosis following the tick bite.
On average, patients visited almost 8 physicians to obtain a diagnosis.
It took approximately 8 years to receive a diagnosis following the tick bite. Less than half (46%) received their diagnosis within the first 5 years after the onset of symptoms.
Co-infections
The majority of participants were not diagnosed with or tested for a co-infections.
“A total of 25% of the sample stated that they had (exactly one) co-infection,” the authors explain, while 15% reported having 2 co-infections.
“For patients that suffered from co-infections, Chlamydia infection was particularly common (34.9%), as was the Epstein–Barr virus (34.9%).”
Treatment
Out of the 252 participants, 168 received antibiotic treatment that lasted at least 3 weeks.
Symptoms improved for nearly 73% of these patients.
93% of participants reported a relapse of symptoms after the completion of antibiotic therapy.
“The type of treatment was oral in most cases (47.6%), or a combination of oral and intravenous therapy (48.8%),” according to the authors.
Intravenous antibiotic therapy was prescribed in only 3.6% of the cases.
Authors Conclude:
“It became clear that Lyme disease is often diagnosed very late.”
“It appears that people suffering from Lyme disease have significantly lower quality of life and sleep and show cognitive impairments when it comes to attention and memory.”
“This study shows that 3.1% of Lyme patients were satisfied with their lives and that 37% scored in the lower third of the quality-of-life scale.”
“It was also shown that Lyme patients tend to have depressive symptoms.”
References:
Hündersen F, Forst S, Kasten E. Neuropsychiatric and Psychological Symptoms in Patients with Lyme Disease: A Study of 252 Patients. Healthcare (Basel). 2021 Jun 14;9(6):733. doi: 10.3390/healthcare9060733. PMID: 34198647; PMCID: PMC8232147.
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**Comment**
This article, right here, encapsulates dire issues that have remain untouched for over 40 years.
Having the EM rash and remembering a tick bite happen far less than we are being told
People are still diagnosed and treated late,even though everyone and their dog knows this is a problem
Eight years is a long time to suffer, allowing pathogens to travel everywhere in the human body causing untold damage
Three weeks of antibiotics is a complete JOKE and is laughable if the consequences weren’t so dire
Most were not tested for coinfections. Since testing for coinfections is just as abysmal as for Lyme – these patients saved a lot of money. The minus, of course, is not understanding that cases with coinfection involvement are far more difficult to treat and require far more medications for a longer period of time. Lyme literate doctors understand this fact and will diagnose and treat clinically (based upon symptoms – not tests alone)
The fact their symptoms improved in 3 weeks doesn’t mean they should end treatment. In fact, for those with a brain, it indicates antibiotic treatment works and should be continued until they don’t work, and then, they should be changed, not stopped as coinfections often need addressing and require different meds
93% relapsing should prove to the deniers once and for all that the measly 21 days of doxycycline clearly isn’t working.
93% relapsing should also put to rest the myth that only 10-2-% go onto suffer persistent symptoms. When you count those who were diagnosed and treated late, as these patients were, it is an astounding 60% that go on to suffer debilitating symptoms.
The life-altering, debilitating symptoms these poor people suffer with show that this 40-year old experiment must end. This is barbarism on a scale similar to the Tuskagee experiment
