Archive for June, 2019

The Psychological Implications of Lyme Disease

https://www.psychologytoday.com/ca/blog/new-approaches-health/201906/the-psychological-implications-lyme-disease

The Psychological Implications of Lyme Disease

Are your symptoms because you have Lyme, or are they caused by Lyme itself?

By Joseph Trunzo, Ph.D

Posted Jun 08, 2019

May is Lyme disease awareness month. Over the years, as an active clinician who regularly sees people who are suffering from Lyme disease, I read with interest the news items that find their way into popular and mainstream media outlets regarding the condition. Most focus on prevention efforts – wear white clothing, tuck your pants inside your socks if going into the woods, wear tick repellent spray, check yourself after coming indoors, mind your pets, etc. Some focus on the medical signs, symptoms, and implications of Lyme – the classic bullseye rash, stiff joints, fatigue, headaches, and so on. Fewer will focus on the enduring medical, legal, and political controversy surrounding this illness. Is chronic Lyme disease real? Should people be treated with long-term antibiotics? Is the testing accurate? Are the current treatment guidelines appropriate and adequate to address all facets of the illness? These are all worthy and important topics to highlight. However, I see few items about the potential psychological and psychiatric implication of Lyme and other tick-borne infectious diseases. This is a major factor that has tremendous impact on the lives of those suffering from this illness.

Most people know that Lyme disease is contracted by a bite from the common deer tick, which is endemic to the northeastern United States. However, there are documented cases of Lyme disease in every state and in over 80 countries, so it is not just a regional problem. Lyme is a particularly stubborn type of bacteria (Borrelia Burgdorferi) know as a spirochete, which means it has a corkscrew-like shape. The bacteria essentially bore into healthy cells and disrupts their functioning.

Lyme is not picky – it can invade any type of cell in the body. The classic symptoms, as outlined above, are the most common, but the spirochete can also invade the cells of the nervous system, wreaking untold havoc on cognitive, emotional, and physiological functioning. This is a condition known as Neuroborreliosis, and it is considerably less well known. It can cause nerve palsy, encephalitis, oculomotor problems, rapid and extreme mood swings, obsessive thoughts, cognitive decline, memory difficulties, rageful outbursts, intense anxiety, depression, and a host of other symptoms traditionally thought of as psychiatric or psychologically driven. Many people may balk at the idea of an infectious disease causing such a panoply of mental health symptoms, but I would point you to other well-known infectious diseases that cause or contribute to psychiatric symptoms, such as syphilis and streptococcus/PANDAS.

Why is this important? Well, as a non-medical practitioner (or a medical one, I imagine), it can be exceedingly difficult to untangle the medical and psychological causes of behavioral health symptoms. While it is obvious that someone suffering from a debilitating disease may be depressed or anxiousas a reaction to being ill, it is also important to consider that the debilitating disease might be biologically driving the psychological symptoms. In the arena of Lyme, this is even more difficult given the contentious divide among medical practitioners regarding the very basic aspects of diagnosing and treating the disease. It leaves non-medical practitioners and laypeople very confused.

As difficult as it might be for a health professional, it is even more difficult for the person who is extremely sick, who has no scientific training, who is potentially cognitively and emotionally compromised, and who feels lost, scared, and hopeless regarding their condition. Awareness of all possible causes of symptom presentation is important in moving toward proper treatment and symptom alleviation. Inquiring about the possibility of infectious processes contributing to psychological symptoms is a worthwhile inquiry, especially in tick endemic areas.

To be clear, I am not at all suggesting that all or most mental illness is caused by Lyme disease or other infectious processes. I am also aware that certain psychiatric diagnoses lend themselves to excessive focus on medical symptoms. It is not my intent or desire to add fuel to that fire. It is my intent to increase awareness that some infectious processes can cause these symptoms and that it is incumbent upon us to be aware of this. I also want to encourage patients and practitioners alike to take a balanced, educated approach to these issues, to be aware of the controversies surrounding Lyme and other infectious disease processes, and to seek medical and mental health treatment that is collaborative, open minded, and as evidence based as possible. The incidence of Lyme is on the rise and these problems may become more common than any of us would like to see. Building awareness is our best bet for helping ourselves and others now and moving forward.

 

About the Author

Joseph Trunzo, Ph.D., is a Professor of Psychology in the Department of Psychology at Bryant University, and the founder of Providence Psychology Services, LLC in Providence, RI.

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Category:

Lyme, Psychological Aspects

Death of Hampton Man With Rare Tick-borne Virus Probed

Please read comment below article….Powassan is not rare.

https://www.njherald.com/20190609/death-of-hampton-man-with-rare-virus-probed

Death of Hampton man with rare tick-borne virus probed

Submitted photo – Armand Desormeaux, of Hampton, right, is seen with his daughter, Dianne Rude, in a June 2018 photo. Desormeaux had tested positive for the rare tick-borne Powassan virus. He died May 16, and the cause of death has yet to be determined.

 

By Lori Comstock New Jersey Herald

Posted: Jun. 9, 2019
An investigation by the Sussex County Division of Health is underway after two cases of the rare tick-borne Powassan virus were confirmed in Sussex County this week.

One of those persons who tested positive for the virus died in May, according to officials, but the immediate cause of death has yet to be determined.

Should it be confirmed that the cause of death was the virus, it would be the first death in Sussex County and only the second confirmed fatality due to the virus in the state, according to Donna Leusner, spokesperson for the state Department of Health. It would also be only the 10th confirmed death in the United States since 2008, according to data from the Centers for Disease Control and Prevention.

The second individual confirmed to have Powassan in Sussex County is recovering at home, Leusner said.

While officials declined to disclose the names, ages or hometowns of the patients due to privacy concerns, on Friday, Dianne (Desormeaux) Rude told the New Jersey Herald she received confirmation on Monday that her father, Armand Desormeaux, 80, of Hampton, was one of those confirmed Powassan cases in Sussex County. Desormeaux passed away on May 16 at Newton Medical Center.

Rude said her father’s infectious disease doctor confirmed the diagnosis on Monday following testing done by the Centers for Disease Control and Prevention.

According to Rude, her father, while he suffered with several medical issues over the years, was quite active up until May 6, when he began running a high fever.

Rude, who lives next door to her father on Halsey Road, took Desormeaux to the hospital, where he was checked out and released, she said. Within 12 hours, Rude said, her father’s health quickly deteriorated and he was taken by ambulance back to Newton Medical Center.

“He was having seizures, shaking uncontrollably,” Rude said.

Suspecting possible Lyme disease, Rude said her father remembered being bit by a tick around April 15 while he was gardening, but had removed it himself and didn’t think much of it because it didn’t form a rash.

Rude said her father was suffering with tremors, violently shaking, unable to verbalize and started losing the ability to move his limbs. While her father had previously been diagnosed with chronic obstructive pulmonary disease, or COPD, a progressive lung disease, Rude said his symptoms made sense when she received the call Monday that he had the tick-borne disease.

The Powassan virus, named after the Ontario community where it was first discovered in 1958, is spread through the bite of an infected black-legged, or deer, tick, which caries Lyme disease, or the woodchuck tick, according to a press release sent to the New Jersey Herald from the Sussex County Department of Health.

While some people do not develop any symptoms, others may develop symptoms one week to one month after being bitten. Symptoms include fever; headache; swelling of the brain, also called encephalitis; swelling of the membranes that surround the brain and spinal cord, also known as meningitis; vomiting; weakness; seizures; fever with stiff neck; limb weakness; confusion; loss of coordination; trouble speaking; and memory loss, according to the county health department.

Those with other medical conditions are at a higher risk of developing complications from the virus. Several clinical reports indicate the virus is fatal in about 10% to 15% of cases. For the survivors, about half will suffer with permanent neurological symptoms, such as paralysis, cognitive difficulties and muscle wasting, the Centers for Disease Control and Prevention states.

Rude, who posted about her father’s diagnosis on Facebook initially to friends only, said she didn’t expect to get much attention from it. But after her friends shared her post on public forums, Rude said she is glad to be “opening up a world of conversation” about a tick-borne illness that isn’t Lyme disease, which is the most commonly known.

While she continues to mourn the loss of her father, a U.S. Marine who worked as a custodian at Frankford Elementary School until his retirement in 2007, Rude believes that telling others of her father’s diagnosis could prevent others from being infected.

“Spray your yards, Frontline your animals and check yourself for ticks,” she said.

Frontline is a flea and tick protection product.

The Powassan virus is so uncommon that just one other person — a 51-year-old Warren County woman in 2013 — has died from the virus in New Jersey. Since 2013, there have only been 10 confirmed cases in the state, including the two confirmed this week in Sussex County, according to Leusner.

Nationally, there have been about 75 cases of Powassan virus reported in the past 10 years, most of the cases in the northern woodlands of Minnesota, Wisconsin, Massachusetts and New York.

There is no medicine or vaccine to cure or treat the virus, but there are several ways to reduce the risk of getting the virus.

When headed outdoors, avoid contact with ticks by steering clear of wooded areas with tall grass, stick to hiking in the center of a trail and apply insect repellent to clothes and gear with permethrin, a substance that incapacitates ticks and prevents them from biting. Wear long-sleeved shirts and light-colored clothes to be able to see ticks, and tuck long pants into socks. Check the body for ticks, and if one is found, remove it immediately.

It is important to seek medical attention if symptoms develop.

For more information about Powassan, visit the state Department of Health website at www.state.nj.us/health/cd/topics/powassan.shtml and the Centers for Disease Control and Prevention at www.cdc.gov/powassan.

Lori Comstock can also be reached on Twitter: @LoriComstockNJH, on Facebook: http://www.Facebook.com/LoriComstockNJH or by phone: 973-383-1194.

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**Comment**

Powassan is NOT rare.

http://www.coppelabs.com/blog/why-is-powassan-virus-infection-still-described-as-rare-and-mysterious/  Please read the following excerpt by Coppe Lab here in Wisconsin,

For the last two years, Coppe Laboratories has dedicated a significant amount of time and resources to dispelling the myth that infection with Powassan virus, a virus transmitted by tick bite, is rare. The Centers for Disease Prevention and Control (CDC) reports only 100 cases of Powassan virus infection in the United States in the last 10 years. Indeed, that statistic gives the illusion that Powassan infection is rare. However, did you know that the only infections reported to CDC are those that are life-threatening, particularly cases causing severe inflammation of the brain like the case reported in LiveScience? Coppe has published three new papers in the last year that clearly show Powassan virus infection is not rare are at all, and until testing for this virus is included as part of tick-borne disease screening panels infections will continue to be underreported. Coppe’s Powassan Guide, which can be downloaded from the website, summarizes the findings from both tick and human Powassan prevalence studies, as well as defining the patient populations that would benefit most from Powassan testing.

Coppe Laboratories offers the first commercial panel designed to detect exposure to Powassan virus throughout all stages of infection.

Powassan can be transmitted in 15 minutes, so all the comforting words by the CDC on the emphasis that transmission of Lyme takes anywhere from 24-72 hours falls flat regarding Powassan. Also, to my knowledge, no work has been done on transmission time when multiple pathogens are being transmitted concurrently, or what happens when a person perhaps gets bitten, obtains Powassan but doesn’t have symptoms, and then in the future gets another tick bite and perhaps gets Lyme with that one. Does that second bite activate a latent virus infection with Powassan?

These questions have never been broached by the CDC.

The news article states, the virus can be worse in those with “other medical conditions.”  

Nobody really has a clue what a concurrent infection with Powassan looks like, but I would label that another medical condition. What if someone has Powassan and Lyme?  Or, in my case, what if you have Lyme, Bartonella, Babesia, and then Powassan on top of that?

This is the fly in the ointment that current research is NOT addressing.

In this article Coppe Lab, right here in Wisconsin has uncovered some interesting findings:  https://madisonarealymesupportgroup.com/2016/08/31/wi-coppe-lab-in-the-news/  A study completed in May, 2016 of 106 patients with suspected acute tick borne disease showed 10.4 % had Powassan.  Nearly 17% of the patients with positive Lyme results also tested positive for POWV exposure. The authors concluded,

“Infection with POWV may be underdiagnosed and may contribute to the persistent symptoms often associated with Lyme disease diagnosis.”16

They postulate:

In both studies, the percentage of Lyme patients co-infected with POWV was about 17%, coinciding with the 10 – 20% of patients treated for Lyme that develop lingering symptoms attributed to post-treatment Lyme disease syndrome.

One thing’s for sure.  The CDC is not getting the memo because every single article I read on Powassan calls it “rare.”  

Question to ponder:  How many have to die before something is no longer rare?

 

Category:

Activism, Lyme, Transmission, Viruses

Dr. Eugene Shapiro & “Medically Unexplained Symptoms”

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24680112?

Dr. Eugene Shapiro and “medically unexplained symptoms”

JUN 10, 2019 — 

Please see the following email sent to the Tick-Borne Disease Working Group…

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc: eugene shapiro <eugene.shapiro@yale.edu> (97 Undisclosed Recipients)
Date: June 10, 2019 at 9:37 AM
Subject: Dr. Eugene Shapiro and “medically unexplained symptoms”

To the Tick-Borne Disease Working Group,

Although we have no test to gauge treatment failure or success Dr. Shapiro knows for certain that chronic symptoms are unrelated to Lyme disease.

Please take a moment to view the 2014 videotaped interview below where Dr. Shapiro describes the term “medically unexplained symptoms” and urges the medical community to develop ways to prevent “healthcare-seeking behaviors” by parents who believed their children may have Lyme disease.

Eugene Shapiro, MD, on suspected Lyme disease

http://  Approx.4 Min.

Excerpt:

“…it’s very clear that simply telling parents that Lyme disease is not the cause of these nonspecific symptoms such as fatigue, various pain syndromes that is not sufficient and that we need a new paradigm to how to best manage such patients. Often it’s not the pediatric infectious disease specialists who doesn’t have an ongoing relationship with his patients who is likely the best but someone who can develop a trusting relationship with them. Very frequently these parents are seeking affirmation that these symptoms are real and in fact they are real it’s just that they’re not caused by Lyme disease…..”

________________

Consider the following 1988 study:

Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi.

Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG.
https://www.ncbi.nlm.nih.gov/pubmed/3054554

Excerpt:

“We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease.”

In contrast to Dr. Shapiro’s videotaped interview I have provided nine randomly selected comments from the 1033 page comment file shared with Kristen Honey, member of last year’s TBDWG.

PDF file shared on Aug 7, 2018:

https://www.dropbox.com/s/qwuo4yss38ov1f3/petition_comments_June%2018%202018.pdf?dl=0

As you read the comments below I ask the question; how is this being passed off as “medically unexplained symptoms?”

Comments:

1.      My 16 year old daughter has late stage, neurological Lyme Disease. I have watch over the past several years as she has had to give up so much. She has stopped playing sports (basketball, soccer, and softball), dancing, eating many different foods, going to school, and even just spending time with friends. We have been to many different doctors with many different specialties looking for answers and have finally received a clinical diagnosis of Lyme Disease from two doctors who are working together to try to help her. The challenge now is to get her strong enough to endure the treatment that she is facing. We are told it may take years of treatment to get her to a reasonable quality of life. It is devastating to see my daughter struggle with all of this at a time when her friends are enjoy things like prom, graduations, and even just youth group activities while she sits at home suffering. This is a terrible disease!

Catherine Weakley, Virginia Beach, VA

2.      My best friend’s life has been devastated by Lyme Disease for the last several years. If only her doctors had taken her concerns and symptoms seriously in the beginning and administered the proper tests, she may not have gone through so many years of pain. I accompanied her to these appointments and watched first hand as her symptoms were ignored and misdiagnosed over and over again. She has gone through years of suffering that could have been prevented had she been diagnosed at the start and given antibiotics. For the sake of her and the many others who are suffering needlessly I urge you to investigate this matter fully and support education, awareness, acceptance and action throughout the medical community.

Samantha Erin Barragar, Malibu, CA

3. I have been suffering from Neurological Lyme Disease since I was 15 years old. A year and a half ago, I had a serious flare up that has left me disabled with seizures, tremors, cognitive issues, immobility, and chronic pain. The severity of this disease should not be overlooked, and warrants significant research. The outdated and immoral IDSA guidelines must be investigated for the sake of all current and future persons infected with Lyme. Our voices deserve to be heard!

Caren dandeo, Middletown, NJ

4.  I’m positive for lyme and co infections and was getting better with treatment, then insurance stopped paying. I’m wheelchair bound now and cannot stand, move, or take care of myself. United HealthCare cited the CDC guidelines of 28 days of antibiotics of treatment. THAT’S NOT ENOUGH.

Doug Frenz, Hudson, OH

5.  I’m only 20 years old and I’ve suffered from Lyme Disease for the past 6 years of my life. For the first few years of my disease I went undiagnosed; doctors would tell me I was crazy, and I continued to get sicker and sicker. My 15 year old sister is also really sick with Lyme and has been for years. It breaks my heart. There has to be something serious done about this epidemic, and fast.

Niki Mitchell, Binghamton, NY, NY

6.   My 4 Lyme tests came back “negative” according to my PCP’s. I was “negative” for 8 years while I did indeed have Lyme. When I visited 2 LLMD’s they both verified that I had Lyme. Had it been caught 8 years prior it could have been cured. Instead, it spread to all parts of my body and brain. I in turn became a burden on the healthcare system and lost all of my assets. Accurate testing MUST be developed!

Serenaty S, New York, NY

7.   I am disabled, in a wheelchair, and currently on IV medicine to try and kill off Lyme, Babesia, and Bartonella. I am in huge debt because insurance refuses to pay for anything – not doctor visits, not medicine, nothing. Too many are sick and dying. Enough.

wendy vogt, Redwood City, CA

8.   My husband has been diagnosed with neurological lyme and the coinfections of bartonella and babesia. We spent years going form doctor to doctor trying to find out what he has. His illness reached the point where he is no longer able to work. Our insurance company will not approve the IV antibiotics he needs to get better due to the current CDC guidelines. The illness does not just affect the patient but the entire family. Lyme needs to be addressed.

Kathy Wilder Bichler, Fair Lawn, NJ

9.  Spent over $100,000 dollars to get our son well in Oklahoma. 21 doctors would not recognize Lyme disease because of ignorance. We went out of state to find a LLMD. It is an awful disease and in so many ways. His Lyme test only had one band positive so according to the CDC is not proof of Lyme. Well wrong…he was pulled 5 ticks off himself and 3 days later severally I’ll for the next 2 1/2 years of being homebound. We where lucky we had a savings but I took our retirement money.

Diana Clock, Bixby, OK
Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

Cc: Eugene Shapiro, MD Professor of Pediatrics

Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861

WAKE UP AMERICA!

 

 

Category:

Activism, Lyme

Leading Lyme Disease Expert Weighs in on New Study Showing Public Health Crisis – GLA

https://globallymealliance.org/leading-lyme-disease-expert-weighs-new-study-showing-public-health-crisis/?

GUEST POINT OF VIEW: JOHN AUCOTT, M.D., DIRECTOR OF THE JOHNS HOPKINS LYME DISEASE CLINICAL RESEARCH CENTER; ASSOCIATE PROFESSOR OF MEDICINE, JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE

In a recently published study, the authors* estimate the cumulative number of post-treatment Lyme disease (PTLD) cases in the United States in both 2016 and 2020. This is important because it represents the first time that researchers have attempted to estimate a downstream effect of infection with Borrelia burgdorferi; the number of people living with PTLD. Their results suggest that the predicted prevalence of PTLD by the year 2020 could be as high as 1,944,189, depending on the assumptions used.

The magnitude of this result points out the major public health impact of the unchecked tick-borne disease epidemic.

It has long been challenging for researchers to estimate the number of new cases of Lyme disease, let alone the rate of PTLD. A number of assumptions and estimations need to be made to generate a mathematical model with as much accuracy as possible. Therefore, the underlying assumptions used in this paper are extremely important, as they directly determine the results. This is illustrated by the wide range of predicted cases for 2020; estimated cases range from 81,509 to 1,944,189 cases, over a 20-fold difference. The first key assumption needed to create the model is the number of new cases of Lyme disease each year (i.e. the incidence). Data reported to the CDC on the yearly incidence of Lyme disease are widely assumed to be under-reported due to passive surveillance methods. Estimates derived from laboratory testing and health claims records all point to an annual incidence in the hundreds of thousands of cases a year. Furthermore, it is difficult to precisely estimate how this rate may change over time due to a range of factors such as climate change, seasonal variation, expansion of the tick vector, and/or increased public awareness of the disease. The authors included three different scenarios to account for this variability.

A more difficult assumption to pinpoint mathematically for inclusion into the model is the rate used for estimating the percentage of patients who develop chronic illness after receiving standard antibiotic treatment, partial treatment, or no intentional antibiotic treatment of Lyme disease. In prospective studies of both early Lyme disease and late Lyme arthritis the percentage of patients who experience ongoing symptoms after antibiotic therapy is approximately 10%. The 10% rate in these studies among ideally diagnosed and treated patients may underestimate the rates found in the community practice of medicine, where delayed diagnosis and imperfect and delayed treatment may be more common. The rate may also be higher in early disseminated Lyme disease with neurologic involvement, which has not been studied extensively in North America, and thus may be under-represented in estimates of PTLD. The authors incorporated two different PTLD rates (10% and 20%) to account for the uncertainty in this estimation.

There are additional assumptions that may have been important to add to the model. First, this study does not account for patients who recover from PTLD over time and no longer suffer from the disease. In the current model, survival and death rates, but not recovery, are accounted for as long-term events. Second, there is no attempt to include different PTLD risk percentages for children who, some have suggested, may have a lower rate of PTLD compared to adults. The absence of these different rates in the model may lead to an over estimation of the number of cases of PTLD.

These limitations should not detract from the importance and relevance of this novel research. The fact that the number of cases of chronic illness related to Lyme disease, as estimated by published rates of PTLD, is so high is extremely important.

These numbers are on par with other important public health threats such as HIV. When combined with the recognized severity of PTLD for patients, the impact is even more significant.

Another important result of this study is the estimated future age distribution of PTLD cases. As the US population ages, the impact of PTLD on older Americans with other co-existing, chronic, conditions may become an important, unrecognized, public health issue. It is unknown how PTLD may interact with or alter the progression of common conditions such as dementia. It will be extremely difficult to tease out the role of prior Lyme disease as a cause or an aggravating factor without molecular markers of central nervous system infection and/or ongoing inflammation in the setting of PTLD.

In conclusion, this study is extremely relevant in understanding the important public health significance of chronic illness related to Lyme disease.

The methodologies used and the magnitude of the findings should inform future epidemiologic studies of disease risk and population-level impact. As research in Lyme and other tick-borne diseases advances and more exact estimates of the model assumptions used in this paper are generated, it will be important for future studies to revisit these calculations, as well as strive to estimate the long-term impact of other tick-borne diseases, including Babesia microti and Borrelia miyamotoi. Finally, this paper should serve as another wake up call to leaders in the public health, medicine, and policy arenas regarding the impact of the expanding tick-borne disease epidemic.

Click here to access published study.
Click here to access GLA press release.

*About study authors: Allison DeLong, M.S., a biostatistician at Brown University’s Center for Statistical Sciences and a member of GLA’s Scientific Advisory Board; Mayla Hsu, Ph.D., Director of Research and Science at GLA; Harriet Kotsoris, M.D. former CSO, GLA

 

john aucottOpinions expressed by contributors are their own.

John Aucott, M.D., is Director of the Johns Hopkins Lyme Disease Clinical Research Center; Associate Professor of Medicine, Johns Hopkins University School of Medicine. Learn more at https://www.hopkinslyme.org/ 

Dr. Aucott is a GLA research grantee, and co-director of the landmark Study of Lyme Immunological and Clinical Events (SLICE) Study that has defined many parameters of acute and long-term LD.

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**Comment**

The one thing this study doe not take into account is an issue I’ve been writing about since I learned about it – those patients who do not fit into the 10-20 percentile due to a late diagnosis and late treatment. I contacted the study author with this important detail and she wasn’t having it.

For far too long authorities have pigeon-holed patients into strict categories that just do not play out in reality.  They continue to use the EM rash criteria and faulty blood serology testing as entrance into research studies even though those getting the rash is highly variable and everyone now admits testing is abysmal.

PTLD issue is another great example.

The reason it’s important is lower percentages allow the CDC/IDSA to keep a lid on this thing as well as to downplay how many are affected. It also makes it look like their “Lyme Guidelines” work for most people. All of this plays out in whether future research is done. The lower percentages also allows them to continue to fixate on the acute phase as it’s only a few of us sorry suckers who remain with symptoms.

The 30-40% of patients diagnosed and treated late desperately need proper research done on them as they are the ones continually neglected.  For a great read on this:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

While two million is nothing to sneeze at, imagine if it included everyone who had persistent symptoms.

Category:

Uncategorized

Boston Bites Back Gala Raises Lyme Disease Awareness & Support

https://www.bostonglobe.com/lifestyle/names/2019/06/05/boston-bites-back-gala-raises-lyme-disease-awareness-and-support/fdc7Usq29YqVn16McEM17K/story.html

Boston Bites Back gala raises Lyme disease awareness and support

From left: Chris Dean; Dr. David Crandell; Dr. Charlotte Mao, pediatric infectious diseases physician at The Dean Center; Dr. Nevena Zubcevik; and Brandi Dean at the first Boston Bites Back in Concord.
From left: Chris Dean; Dr. David Crandell; Dr. Charlotte Mao, pediatric infectious diseases physician at The Dean Center; Dr. Nevena Zubcevik; and Brandi Dean at the first Boston Bites Back in Concord.(MIKE CASEY/CASEY PHOTOGRAPHY)

The inaugural Boston Bites Back gala was held Saturday at the Concord home of Christine Grace and Sean Green, where guests honored Nicole Malachowski, the first USAF female Thunderbird fighter pilot and a Lyme disease advocate. The event — sponsored by Ride Out Lyme and the Dean Center for Tick Borne Illness — drew 120 guests including Dean Center and Ride Out Lyme cofounder Brandi Dean, Ride Out Lyme cofounder Jill Fulginite, WCVB’s Erika Tarantal, and Didier Cohen, a DJ, producer, and Lyme advocate. One of the highlights of the evening: the announcement of a $1 million grant to the Dean Center, with a focus on pediatric Lyme treatment.

Christine Grace and Sean Green at the Boston Bites Back gala.
Christine Grace and Sean Green at the Boston Bites Back gala.(MIKE CASEY/CASEY PHOTOGRAPHY)

Category:

Uncategorized