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President's Blog
Saluting Jean F. Galbreath & Harford Cty. Lyme Disease Support Group, Inc.

 

Mrs. Jean F. Galbreath, President of the all- volunteer Harford County Lyme Disease Support Group, Inc.Jean, advocating for the rights of children to be treatedLDALyme Literacy: From the Desk of the LDA President
The Lyme Disease Association, Inc. (LDA) would like to thank Mrs. Jean F. Galbreath, President of the all-volunteer Harford County Lyme Disease Support Group, Inc., for her dedication and hard work over the past two decades. The HCLDSG was organized by Jean in 1995 and incorporated in 1997. Over time the group has filled a void in education in the area of Harford County, Maryland, a state which ranks 8th in case numbers in the last official CDC reported numbers from 2015.

The Group hosted many activities over the 22 years to raise awareness and even funds for the Lyme Disease Association’s Lyme Aid 4 Kids fund for families who are financially unable to have their child diagnosed or begin treatment for Lyme disease. They set up tables with education materials and sold mums and homemade baked goods at local events to raise the funds.

I went to Maryland to testify against a dangerous bill for patient and physicians alike in the Maryland Senate in 2008. Jean and the group led the State effort to defeat the bill, which never made it out of the Senate Committee, fortunately for patients. It would have mandated that the Maryland Department of Health disseminate the latest consensus guidelines to physicians in Maryland—undoubtedly, the IDSA treatment Guidelines which do not recommend any long term antibiotic treatment or alternative treatments for Lyme disease. Click here for history of the bill’s defeat – scroll to Maryland

Over time, the LDA has supplied the Group with its materials for free, the LymeR Primer, the ABCs of Lyme Disease, and Tick Identification Card, which they then handed out throughout the area at events, teaching people about Lyme disease symptoms and prevention practices. In 2015, the LDA awarded the Harford County group its Dr. Lis Heininger Memorial Education Grant to be used to support its educational programs. The grant is in memory of a late advocate and LDA Chapter Chair from Corning New York, Dr. Heininger, who devoted her life to raising Lyme awareness through tremendous physical hardship that plagued her before she succumbed to her illness. LDA awards the grant to those individuals/organizations who strive in extreme circumstances to help others avoid acquiring Lyme disease. Click here for more information about Dr. Heininger and the grant

In the words of Jean upon receipt of the award, “We are excited to expand our advocating and educational role in the community and throughout Maryland.” Expand they did. An example of that expansion was a Touch A Truck program held in Street, Maryland, which drew over 1,000 people who were offered information on Lyme and tick-borne diseases by the support group members.

Over the years, I was fortunate to have had the opportunity to meet Jean at several Lyme events and her kindness, humanity, humility, and devotion to eradicating Lyme disease were readily apparent. I feel fortunate to know her and to have been inspired by what she has accomplished under difficult circumstances. We will continue cheering for Jean in the near future. Together, we have helped many people learn about this terrible disease and what it can do to bodies and minds. We have made some headway state by state with people like Jean leading the effort and being a beacon for all to see and follow. Thank you, Jean and Harford County Lyme Disease Support Group, Inc. Know that your work has not gone unnoticed and has touched many people’s lives.

 




President's Blog
LDA Responds to CDC Limiting Lyme Disease Treatment

IV pole loWho Controls Fake Lyme Disease News?

LDALyme Literacy
From the Desk of the LDA President

The time has come when the public is entitled to know who in government or elsewhere is controlling the treatment of Lyme disease treatment of Lyme disease. 43 years into the disease, patients who can range from just infected to seriously debilitated with long-standing disease, are all thrown the same tired old bone, 3 weeks of doxycycline.

Scientists who are able to publish the science behind longer-term treatment have their science ignored.  The public is not told about persister cells being discovered which appear to be able to survive initial antibiotic treatment; they are not told about biofilm formation; they do not know about the Lyme bacteria hiding in different types of tissues. They are not told about the animal studies which show survival of the spirochete after treatment.

Government-funded NIH research has featured the same old studies with nothing new to offer sick patients, apparently due to the “experts” refusing to sit on peer review on studies with patients with long-tern symptoms–they do not believe in chronic Lyme.  New technology is ignored.

Advocates are blamed for incorrect information being posted on the net, for spreading junk science, for misunderstanding the science, for vaccine failure, for misleading patients, for promoting chronic Lyme, etc. etc.

Patients are categorized as hysterical, needing psychiatric care, having symptoms after treatment no different than those of the normal population– bottom line, not physically sick. These Lyme denialists offer them a pat on the head and show them the door, all the while chanting the “no chronic Lyme” mantra, clueless as ever as to what might be wrong with these patients or how to cure them.

Treating physicians are excoriated for caring about patients, spending hours of time with them to make a clinical diagnosis of Lyme disease and oftentimes, co-infections. They are forced to test with antiquated technology using restrictive band definitions, tests which should have been scrapped years ago, band restrictions that never should have been imposed. Meanwhile, they look over their shoulder to check out whether the “Lyme police” are coming after them and their medical licenses, in part due to the
Draconian Infectious Diseases Society (IDSA) guidelines imposed upon them and their suffering patients: 3 weeks of doxy, nothing else, perhaps a psychiatrist, or what often happens to these patients, a “goodbye, live with it.”

CDC has only endorsed and posted the IDSA guidelines on their website, despite the fact those guidelines are stale and have long ago been removed from the National Guidelines Clearing House, set up under the auspices of the US Department of Health &amp; Human Services.&nbsp;&nbsp;The Lyme Guidelines from the <a href=”index.php?option=com_content&amp;view=article&amp;id=1256:ilads-publishes-new-lyme-treatment-guidelines&amp;catid=35″>International Lyme &amp; Associate Diseases Society, ILADS</a>, doctors who truly have an understanding of the disease and work in the trenches to provide real medical help versus false erudition, are posted on the National Guidelines Clearing House, which indicates they meet the Institute of Medicine Standards for Guidelines.

Why does CDC refuse to put up ILADS Guidelines? They feel IDSA guidelines are the best guidelines, nothing concrete to support that assertion, since the ILADS guidelines are supported by IOM standards.&nbsp;&nbsp;Shouldn’t physicians be able to evaluate guidelines supported by IOM standards and accepted by the Guidelines Clearinghouse in relationship to stale guidelines not posted by HHS on its own National Guidelines Clearinghouse?

Too many people are getting sick, too many people are developing chronic disease, so now CDC has published in MMWR, an article titled&nbsp;“Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease — United States”Natalie S. Marzec, MD; Christina Nelson, MD; Paul Ravi Waldron, MD; et al.
Sharing horror stories a few patients experienced with IV treatments for Lyme, the CDC has shut down all long term treatments with antibiotics and with immunoglobulin. The CDC informed the Lyme Disease Association this morning that CDC felt this article was for the good of the patients,&nbsp;who don’t understand the dangers of IV treatments.

For the good of the patients, we need to know who ultimately controls Lyme. Why are “they” refusing to allow cutting edge testing, refusing to provide resources to improve poorly performing tests equivalent to underperforming tests with a Federal imprimatur, or refusing to allow broader band inclusion in existent testing?

Why won’t they permit long-term antibiotic treatment for humans when 70+ % of antibiotics in the US are used to fatten animals and are known to be causing antibiotic resistance; why stress the dangers of IV treatment for Lyme when other diseases such as cancer and HIV use IV and have not been singled out to warn patients of dangers; why do they refuse sick patients treatment that is based on physician judgement grounded in their assessment of the best science?

Why don’t they encourage further clinical trials to supplement flawed, underpowered trials; why do they acquiesce to dangerous policy pronouncements to assume–totally indifferent to patient health costs/benefits–that tests are false positive? Why don’t they fund research looking at chronic symptoms yet they do ignore the good science supporting post-treatment persistent infection.

43 years into the disease, with almost 400,000 cases in 2015 using CDC’s own 90% not reported calculations, we have no accurate test, no cure, and more questions than answers. To shape good public health policy for the good of patients, in place of fake news, let’s have real answers&nbsp;really soon.

Click here: Pat Smith in NJ.com article on CDC limiting Lyme treatment

Click here to view: Responses are beginning to come in from organizations and doctors regarding CDC’s limiting of Lyme disease treatments for patients.

 

 

 

 

 




President's Blog
Deer Ticks and Blacklegged Ticks: One in the Same Tick

 

TickLDALyme Literacy: From the Desk of the LDA President
There are a number of ticks in the United States that can carry and/or transmit many diseases which people and their pets may get from a tickbite. Often, one tickbite can transmit several different diseases. The ticks most often talked about are the Ixodes scapularis, commonly known as the deer tick or blacklegged tick, and its western cousin, Ixodes pacificus, the western blacklegged tick. Both of these ticks transmit Lyme disease. Below is a list of some of the more common US ticks transmitting diseases with their Latin name and common name(s) and some of the diseases they transmit. View pictures of these ticks on our tick vector photo page.

Ixodes scapularis blacklegged or deer ticks transmit Borrelia burgdorferi, Borrelia mayonii, Borrelia miyamotoi, babesiosis, anaplasmosis, Powassan encephalitis virus, tick paralysis, tularemia, bartonellosis, ehrlichiosis

Ixodes pacificus western blacklegged ticks transmit Borrelia burgdorferi, babesiosis, anaplasmosis, bartonellosis, Borrelia miyamotoi

Amblyomma americanum lone star ticks transmit STARI, HME, Heartland virus, tularemia, tick paralysis, Q fever, bite may cause alpha-gal meat allergy

Dermacentor variabilis American dog ticks transmit RMSF, tularemia, tick paralysis

Dermacentor andersoni Rocky Mt. wood ticks transmit RMSF, tularemia, CO tick fever, tick paralysis, Q fever

Dermacentor occidentalis Pacific Coast ticks transmit Rickettsia phillipi (364D)

Amblyomma maculatum Gulf Coast ticks transmit R. parkeri rickettsiosis

Rhipicephalus sanguineus brown dog tick transmits RMSF in the southwestern US & along US Mexican border (dogs primary host but will bite humans & other mammals—can live inside house for entire life)

Ornithodorus hermsi, ornithodorus turicata, Ornithodorus parkeri (a soft bodied tick) transmit tick-borne relapsing fever caused by Borellia hermsiiBorellia parkerii, or Borellia turicatae

 

 




President's Blog
The Role of the Lyme Disease Association in Lyme Disease Treatment

 


The Lyme Disease Association (LDA) is a national non- profit dedicated to funding research, education, prevention and patient support. We are not physicians or researchers, although we do have both on the LDA’s Scientific & Professional Advisory Board to answer our questions when necessary. Although we do not answer specific questions about Lyme disease treatment, our programs often provide information on that topic, and we provide funding for patients and researchers related to that topic.

To date, LDA has provided 112 grants to researchers across the nation, and subsequently, there are 45 peer-reviewed publications featuring research supported by the LDA. Several of those grants have involved treatment studies with antibiotics and also one with hyperbaric oxygen. A few of the treatment studies are briefly mentioned below, all can be accessed at the above link for further details and additional studies.

LDA funded a pilot study with Dr. Brian Fallon which enabled him to present that preliminary data to the National Institutes of Health where he received a large grant to perform a study published in 2008 in Neurology entitled “A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy.” The conclusion reached was IV ceftriaxone therapy results in short-term cognitive improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition occurs after the antibiotic is discontinued.

The LDA funded a study done by Dr. Dan Cameron, NY, who published in 2008 in Minerva Medica. “Severity of Lyme disease with persistent symptoms. Insights from a double-blind placebo-controlled clinical trial.”  “The improvements in the SF-36 measure of QOL for subjects randomized to amoxicillin vs. placebo was significant (46% vs 18%, P=0.007). It is important for clinicians to be aware that LDPS can be severe. A significant gain in the QOL for subjects randomized to amoxicillin in this RCT without serious adverse events is consistent with the goal of improving patient’s QOL and consequently worthy of further study.”

Recent grants to Dr. Ying Zhang, Johns Hopkins University have supported his work published in the May 2016 in Frontiers in Microbiology entitled “A Drug Combination Screen Identifies Drugs Active against Amoxicillin-Induced Round Bodies of In Vitro Borrelia burgdorferi Persisters from an FDA Drug Library.” According to the study, “These findings confirm and extend previous findings that certain drug combinations have superior activity against B. burgdorferi persisters in vitro, even when pre-treated with amoxicillin. These findings may have implications for improved treatment of Lyme disease.”

Also from a grant to Dr. Zhang, on Oct. 2016 in Frontiers of Microbiology, he published “Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-like Microcolony B. burgdorferi Persisters Which Are Sterilized by Daptomycin/Doxycycline/Cefuroxime Drug Combination without Pulse Dosing.”  The “findings indicate pulse dosing may not always work as a general principle but rather depends on the specific drugs used, with cidal drugs being more appropriate for pulse dosing than static or persister drugs, and that drug combination approach with persister drugs is more effective at killing the more resistant microcolony form of persisters than pulse dosing.”

All 18 of the Lyme Disease Association “Lyme & Other Tick-Borne Diseases” continuing medical education (CME) conferences, most provided jointly with Columbia University, have had up to 20 speakers discussing many aspects of tick-borne diseases including Lyme disease symptoms and Lyme disease treatments. The audience is primarily doctors, health care providers, and researchers, with some public members in attendance, and they all have a chance to ask questions and personally interact with each other at a networking reception. Researchers often form collaborations there for future research projects. Other free public programs provided across the country by the LDA have provided physicians speakers who discuss treatment and answer audience questions.

Often, those who suspect they have Lyme or have been diagnosed do not have the funds necessary to proceed. The LDA has a special program developed with author Amy Tan, herself a Lyme sufferer, called LymeAid 4 Kids. Families who are financially eligible, can apply through their physician’s office and receive a grant for a child to get diagnosed or begin treatment.