Archive for the ‘Activism’ Category

Letter to Patients Having a Hard Time Getting Treatment After a Tick Bite

Tick bite care, references for Urgent Care and PCPs.

ILADS Member Jane Marke, MD has the following message. To contact her directly, write to contact@ilads.org and your message will be forwarded on to her.

I’m getting lots of calls from friends and family all over the country who are having trouble getting treated for tick bites. If you have having a similar experience, you, too, might want to have something handy to send them about what to expect, and how to enlist the health providers they see in giving appropriate treatment. To that ends I’ve gathered what I think is helpful for people to bring to Urgent Care or their PCP with them if they find these providers resistant to treating them.

Thanks to MMI, Lucy Barnes and PubMed for content.

________________________________________________________________________________________

Basic email:

Dear________,

Here’s what I think is most important to know about tick bite treatment:

Tick Bite Care
What to do if you get a tick bite? There are some myths, but there’s good science busting them.

1.  Tick attachment time is irrelevant. If a tick is sick enough, Lyme bugs are in their saliva, and they transmit the disease immediately. If the tick is less infected, they have to send bugs from their stomach to mouth, and that takes longer. But do you really want to count on how sick the tick is? Don’t let anybody tell you that because the tick wasn’t attached for 24-36 hours you’re ok.

2.  One double-dose of doxycycline is not sufficient. The guidelines that are on the government guideline website, www.guidelines.gov advise 21 days. (That’s a federal government Institute of Medicine website and it’s high quality). No other Lyme guidelines exist. (CDC is not in charge of guidelines; the Institute of Medicine is.) The problem with the study of one single-dose of doxy is that it looked for the bull’s eye rash; it did not look to see if people got sick later. It reduced the rash incidence by 87%. That’s something; but not enough, and it tells us nothing about whether those without rash got sick later. There is no reason to not follow the government guidelines and to risk your health or that of your child because somebody only wants to give you one “double dose” of doxy. There are mice studies of this treatment, and they look abysmal.

3.  If you missed the tick bite and have the bull’s eye rash you are lucky inasmuch as you have incontrovertible evidence of being infected with Lyme. You HAVE Lyme. You can still get “early Lyme” treatment, but it’s not the same as treatment for a tick bite. You can find recommendations for treatment on the http://www.guidelines.gov website. Here’s a direct link to the Lyme Guidelines: http://bit.ly/2tqnaGU. These are government endorsed guidelines, the best we have at this point in time.

4.  Tick-testing is controversial. Don’t wait for the testing to get treated. Negative tick tests give you no useful information; we have no idea how reliable tick testing is vs human testing. But if a tick is positive for a co-infection, something other than Lyme, you might consider getting prophylactic treatment. That’s your call, made with your doctor, but it’s a real consideration. So if you send the tick for testing, make sure the lab tests for co-infections, as well as several species of Lyme.

Jane Marke, MD, ILADS member
New York, NY

**Comment**

If you find a doctor willing to become educated on TBI’s (tick borne illness) please give them this link:  https://madisonarealymesupportgroup.com/2017/06/20/help-doctors-get-educated-on-lyme-and-tick-borne-illness/

Please read:  https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/

Even the CDC is stating to treat empirically (this is new as of July, 2017): https://madisonarealymesupportgroup.com/2017/07/01/good-morning-america-cdc-advises-multiple-lyme-tests-due-to-false-negative-results/  CDC spokesperson at end of video.

https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/ If ticks are co-infected, patients can be too.

https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/  Ticks transmit a whole lot more than Lyme.

https://madisonarealymesupportgroup.com/2016/03/20/why-we-cant-get-better/

 

Category:

Activism, Lyme, Testing, Ticks, Treatment, Uncategorized

Tick-hiker’s Guide to the Galaxy

http://today.uconn.edu/2017/06/tick-hikers-guide-galaxy/?utm_source=launchdistribution&utm_medium=email&utm_campaign=monthly_email#/   June 23, 2017 – Elaina Hancock – UConn Communications

Following an unseasonably warm winter, the tick population is flourishing and these shiver-inducing, cringe-worthy arachnids are making themselves known.

To avoid the tiny creatures that are generating news headlines as the carrier of all sorts of diseases, you must have an understanding of ticks’ likes and dislikes. The UConn Home and Garden Center offers a fact sheet about what makes ticks tick.

Thankfully, ticks are unable to fly or jump; but they are particularly good at hitchhiking, using a behavior called “questing.” When questing, the tick clings to the tips of grass or other vegetation with its rear legs, and with its front limbs it will reach out awaiting a passerby and grab hold.

“The ticks are aiming for your head and neck,” says Sandra Bushmich, associate dean of agriculture, health, and natural resources. “Larval ticks will climb about an inch up, nymphs will quest about six inches up, and adults will climb about a foot up on the vegetation waiting for someone to brush by.” After finding their host, they will climb up to find the perfect location for feeding.

Ticks usually feed on different hosts during their various life stages. Larvae often feed on ground-dwelling rodents, while the nymphs and adults search out larger animals including humans.

The hungry ticks literally “dig in” while feeding. They first grasp the skin, cut into it, and insert their feeding tube. It is often difficult to pull off a tick, since some species secrete a cement-like substance that keeps them well attached.

Bushmich also notes that ticks rely on cool, damp, and dark locations, where they hang out so that they don’t dry out. As long as they have somewhere like this to stay, they can go without feeding for months or longer (depending on the species).

The stone walls of New England are not only beautiful, they are also ideal for providing these basic tick necessities. Fortunately for ticks, these habitats are also frequented by small rodents such as squirrels, chipmunks, or mice, who play the dual role of transporting them around and serving as a source of blood for them to feast on.

While the tick hitches a ride and starts chowing down, its rodent host carries on with its life, scurrying about looking for food and making rodent babies. The tick will hang out here until it is full, when it will ditch its current host, molt, and then in its new stage of life search for a different host, whether it be another rodent, a deer, a dog, a human – you name it. There are few places these hitchhikers can’t access.

Since rodents are key players in the tick life cycle, controlling their population is a vital step in reducing the tick population. Cute as they may be, these rodent hosts are typically where the young ticks – the nymphs – are first exposed to diseases such as Lyme, Powassan, or Anaplasmosis. Rodents are reservoirs where these pathogens may hang out waiting for a tick to suck them up and transmit them to a new host. According to the Home and Garden Center’s field rodent fact sheet, populations of small mammals are effectively controlled with baited traps or by keeping cats around to help keep the numbers in check.

Landscape modification also provides a barrier to ticks and can be very effective at management of ticks, says Susan Pelton of the Home and Garden Center.

Dry wood mulch and crushed stone are both good. “Just no fresh mulch or leaf litter – keep that clear!” Pelton says. It’s important to maintain clear paths and also provide a dry mulched perimeter around stone walls, plantings, and in areas close to the forest’s edge. Keep wood piles away from the house, and avoid ground covers like pachysandra because they provide excellent cover for wandering rodents, she adds.

Some 82 percent of deer ticks found in a yard will be around 9 feet from the edge of the nearest wooded area, according to the Home and Garden Center fact sheet.

Discouraging the presence of deer is another proven method to reduce tick numbers, Bushmich notes. “Deer are the host that is best for reproduction in the deer tick life cycle, and the deer population is out of control in this area.”

Fences or repellents can be used, but also avoid planting deer-preferred plants such as hosta, ivy, or rhododendron, which act to invite deer onto your property. The Home and Garden Center offers a list of deer-resistant trees and shrubs.

If you have made the gruesome discovery of a feasting tick, remove it as quickly as possible. Since they may be ‘cemented’ in place, it’s no wonder ticks can be tricky to remove. To effectively remove one, grasp it as close to your skin as you can while applying a steady, firm, upward force to pull the tick off without squeezing its abdomen, which can lead to regurgitation of its stomach contents into the host.

Of course, it’s better not to pick up hitchhikers in the first place.

Category:

Activism, Lyme, Ticks

British Lord Says CDC/IDSA Lyme Guidelines Not Fit For Purpose

Lord Astor of Hever: British House of Lords speech – UK 29-06-2017

https://www.lymedisease.org/touchedbylyme-queens-speech/ by Dorothy Kupcha Leland

British Lord Astor of Hever addressed Parliament with some pretty forceful words against the CDC/IDSA:

My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly increasing health risk in the United Kingdom. If Lyme disease is not treated early, it can cause significant illness and devastate affected patients’ lives. This is what life has been like for my daughter, and I declare this personal interest.

Many noble Lords will be aware that ticks harbour Lyme disease, as well as many other equally serious infections. These infections are passed to humans and animals via the bite of an infected tick, due to and during their method of feeding. The danger is no longer confined to rural areas, with ticks now being found in every county of the United Kingdom, and increasingly so in urban parks and people’s gardens.

If Lyme is diagnosed and treated early, the chances of a full recovery are good. However, failure to diagnose early and treat adequately can result in serious consequences to the patient. Tick-borne diseases that are misdiagnosed or neglected result in complicated infections, which have devastating and multisystemic consequences. Patients can be left with extremely debilitating and chronic symptoms, needing a wheelchair or completely bedridden, and enduring intense and relentless suffering.

Despite the increasing threat that Lyme disease poses to public health, there remain no suitable UK official guidelines for diagnosis or treatment. What we do have is outdated National Health Service guidance, relying on guidelines written by the Infectious Diseases Society of America and supported by the CDC. According to the National Guideline Clearinghouse of America, the IDSA-CDC guidelines are not fit for purpose. They are outdated and do not take into account recent developments in the understanding of these complex infections.

The absence of adequate guidelines is closely linked to the fact that insufficient levels of training are available to our doctors. Even if a positive test is obtained, expertise is seriously lacking, both in value of interpretation and in dealing appropriately with the illness. That stark statement is in accordance with multiple testimonies from patients. Expert patient input is crucial in turning the situation into a positive solution, not only for patients themselves but for the National Health Service as a whole.

Failure to meet the challenges of Lyme disease has led to unknown numbers of people becoming infected, but not diagnosed or treated. It could amount to tens or even hundreds of thousands of people. The UK now finds itself in a situation where patients with diverse illnesses and symptoms might actually have unrecognised Lyme disease.

In these patients, the infection could have reached a stage where treatment will be difficult and lengthy and will require the supervision of expert physicians, trained and experienced in this complex disease and the frequently occurring co-infections.

The cost to the Exchequer in terms of numbers of patients unable to work and using the NHS for serious health problems must be a truly staggering amount. Neither this country, nor affected patients, can afford this. Early recognition of symptoms and early treatment would save our National Health Service a great deal of money.

Given the huge cost, both in terms of the impact on the patient’s quality of life and, in practical terms, on our health service, it is clear how important it is to prevent as many cases as possible reaching this stage. Improvements in the training available to our doctors should be made a top priority. However, awareness among the general public of the risk posed by ticks should also be prioritised.

There are some very simple measures that can be taken to reduce one’s chance of becoming infected with Lyme disease. However, few people have any knowledge of this. How can we safely, and with a clear conscience, encourage children to play outside and make the most of the outdoors if we are carelessly allowing them to risk their health by contracting one of these insidious, infectious diseases?

Outdated guidelines, unreliable blood tests, insufficient training for doctors, a lack of tick-borne specialists of calibre and a widespread lack of awareness among the general public of preventive measures are all factors that are leaving us alarmingly ill-equipped to tackle a problem that poses a rapidly increasing risk to every UK citizen.

In the light of this, I ask my noble friend what his department is doing to ensure that GPs receive training in Lyme disease that is mandatory and thorough enough to allow them to make clinical diagnoses. Proper awareness will prevent the number of Lyme disease sufferers growing.

Lyme patients want to regain their health. They want to get back to work. They wish for nothing more than to regain control over their lives and take part in all the activities they enjoyed before they became ill. Most Lyme patients have the will and determination to achieve this.

But none of these aims can happen if they are sidelined and hobbled by misguided opinion—which includes the current health system situation, with its constraints and limitations.

 

 

Category:

Activism, Lyme, Testing

Powassan Can Kill

https://www.aol.com/article/news/2017/06/27/a-little-known-tick-borne-infection-could-have-permanent-or-fata/23004060/ (Video here)

This year is shaping up to be a banner year for disease-spreading ticks.

Most tick-borne diseases are serious, but there’s a particularly bad one to look out for if you live in Minnesota, Wisconsin, or the Northeast: Powassan virus.

“We know that if somebody gets bitten by an infected tick with this virus and they get sick they have a 50% chance of having permanent neurological damage and a 10% chance of dying,” Durland Fish, professor emeritus of epidemiology at the Yale School of Public Health, told Business Insider.

The caveat is that we don’t know how likely people are to get sick, Fish said — it seems a number of people bitten by Powassan-infected ticks don’t get sick (at least not sick enough to merit a case report).

Powassan is spread by the same ticks that cause Lyme disease, and there’s no treatment for it. Some studies show that the virus can be transmitted in 15 minutes or less.

According to Fish, Powassan was first discovered in the 1950s in Powassan, Ontario. From what we can tell, the earliest cases occurred when people were bitten by a species of tick that rarely bites humans. But Fish said that over the last 30 years or so, the deer tick (also known as the blacklegged tick) has “been expanding its range enormously.”

Somewhere along the way those ticks — which bite humans frequently — picked up the virus. It turns out they can spread Powassan, too.

Doctors have now detected Powassan in New England, New York, Wisconsin, and Minnesota — though only about 75 cases have been reported over the last 10 years. Fish thinks cases may be underreported, however, since doctors in many areas don’t have the ability to detect Powassan or may not know to look for it. Fish said the first case was recently recorded in Connecticut by a physician who’d previously encountered Powassan in upstate New York.

The fact that the virus was first discovered in Ontario but has since been found in US states may make it seem like it’s spreading, but that’s not necessarily the case, according to Rafal Tokarz, an associate research scientist at Columbia University’s Mailman School of Public Health.

Until recently, Powassan hadn’t been tested for in many places, says Tokarz. So the uptick may just be due to the fact that we’ve started looking for it.

“Chances are that if you get bitten by a tick and you get a tick-borne disease, it’ll be Lyme,” Tokarz said. The CDC estimates that 300,00 people get infected by Lyme disease every year, but Lyme can be treated and it usually takes hours or days for a tick to transfer that infection. (please read comment at end of article)

For Powassan, on the other hand, “we don’t have a vaccine and we don’t have awareness,“ Fish said. “I hate to be sounding alarms, but just from what I know, it seems like something that could be serious.”

**Comment**

I’m thankful that this article admits that Lyme (borrelia) can be transmitted in hours.  The “powers that be” typically regurgitate it takes 24-36 hours.  To educate yourself as to how they came up with the erroneous and misleading time frame:  https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

Where the article takes a slight nose dive is when it states “Lyme can be treated.”  My comment is that yes, it can be treated, but it often isn’t due to under diagnosis by physicians who are trained to follow the CDC/IDSA outdated and horrifically unscientific treatment guidelines of essentially 21 days of doxycycline for everyone, regardless of symptoms.  Those working with Lyme/MSIDS patients understand this is a complex illness that typically includes coinfections that can look similar but different to Lyme such as Bartonella, Mycoplasma, Babesia, and more.  I’ve said this before and I’ll say it again:  Throwing doxy at this is like throwing sand into the ocean.  While that particular mono therapy will usually work for acute (just bitten) cases, it won’t touch those with chronic, persistent symptoms.  The CDC/IDSA needs to recognize the importance of coinfections and admit borrelia can persist causing ongoing symptoms that can be life-changing and threatening.

Please notice that the news report (video in link at top) stated there have been 8 Powassan deaths within the continental U.S.  Please compare that to ONE death caused by Zika in Puerto Rico, and that was not due to the virus itself but due to Guillain-Barré, yet when you compare research dollars of the two:

NIH allocations for other infectious diseases reveals a tremendous bias against Lyme: Over 300,000 cases per year, dismissed as insignificant and warranting $24 million in NIH funding, in favor of Zika’s emergency status (like SARS, swine and bird flus, Ebola), which is the top priority at CDC and to which Congress last year considered dedicating $622 million to $1.1 billion in response to the White House’s request for $1.9 billion. CDC Director Tom Frieden was quoted in the New York Times as saying: “Three months is an eternity for control of an outbreak,” he said, adding: “There is a narrow window of opportunity here and it’s closing. Every day that passes makes it harder to stop Zika. This is no way to fight an epidemic,” Frieden said. To date, Zika has affected 216 people on American soil. Annually, over 300,000 Americans contract Lyme disease in this country. Think about those numbers. http://www.huffingtonpost.com/entry/2017-brings-hope-for-lyme-disease-sufferers_us_5874e964e4b08052400ee62b  By David Michael Connor

For more on Powassan:  https://madisonarealymesupportgroup.com/2016/02/21/powassan-virus/

 

Category:

Activism, Lyme, Viruses

Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under Internal Investigation

https://www.linkedin.com/pulse/human-rights-violations-relapsing-fever-lyme-disease-luche-thayer?trk=v-feed&lipi=urn%3Ali%3Apage%3Ad_flagship3_feed%3BzmkJuo4eiK0Nx9mHCifEhA%3D%3D  Published June 2017 by Jenna Luche-Thayer

Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation

A report submitted to World Health Organization resulted in a meeting between a United Nations Human Rights Council Special Rapporteur and medical professionals, scientists, human rights experts and advocates on June 7, in Geneva, Switzerland. This meeting focused on the violations against persons living with borreliosis infections, such as relapsing fever and Lyme disease.

Special Rapporteur, Dr. Dainius Pūras heard presentations on the range of these violations by representatives from an international Ad Hoc Committee dedicated to updating the World Health Organization’s (WHO) diagnostic codes for borreliosis infections and Global RBCC, a consortium responding to the Lyme disease epidemic.

Jenna Luché-Thayer, a human rights expert with 32 years of experience in 42 nations reported, “Borreliosis infections are pandemic – these include relapsing fever and Lyme borreliosis. The WHO diagnostic codes do not recognize many of the disabling conditions caused by these infections. Across the globe, medical systems use these codes to diagnose illness and determine treatments. The outdated codes result in very sick people being denied treatment —even when treatment options meet the internationally accepted gold standard for guidelines set by the Institute of Medicine (IOM). In addition to denial of care, there are attacks on medical professionals who are following these guidelines to treat chronic Lyme disease patients.”

The former Senior Advisor to the United Nations and U.S. government asked, “Can you imagine very sick children, in the process of healing through treatments from gold standard guidelines, being forcibly removed from their parents? This is happening in many countries. Can you imagine health insurance companies telling Lyme patients they will not cover such treatments but will pay for their euthanasia? According to Dutch researcher Huib Kraaijeveld, this is happening in Europe. These are shameful and predatory actions, and appear to be largely driven by outdated science, outdated codes and skewed financial motivations,” says Luché-Thayer.

The Lyme disease bacteria —spirochetes similar to syphilis— are known to evade immune response and form biofilms that are difficult to eradicate. Disputes about appropriate treatment often leave patients with no treatment options for their disabling neurological, cardiac and arthritic symptoms, as well as unrelenting fatigue and pain. Lyme carditis, an infection of the heart, can cause death and undiagnosed Lyme can lead to dementia.

Hundreds of peer reviewed publications describe serious physical conditions caused by the infection. They include Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, strokes and congenital Lyme disease. The complications from Syphilis are clearly listed and detailed in the WHO codes whereas most Lyme complications are not.

Dr. Clement Meseko, Chief Research Officer and Onehealth/Ecohealth advocate at the National Veterinary Research Institute in Vom, Nigeria told the Special Rapporteur, “Many Africans depend on livestock for their livelihood and this exposes them to zoonotic borreliosis. WHO diagnostic codes for these infections need to be updated and surveillance across Africa needs to be improved. Until this happens, many people in Africa will just suffer.”

The WHO diagnostic codes for Lyme disease parallel the views held by the Infectious Diseases Society of America (IDSA). IDSA is a private medical society that promotes strict treatment limitations, regardless of Lyme patient response, and in contrast to their recommendations for other patient groups suffering from persistent infection. Some IDSA members theorize that undiagnosed mental illness, rather than persistent infection, might explain why IDSA recommended protocols fail thousands of clinically diagnosed Lyme patients.

The 2006 IDSA Lyme treatment guidelines do not meet the IOM’s internationally accepted standards for guidelines. Some of the guideline authors provide expert witness for insurers against Lyme patients; and insurers use the 2006 IDSA guidelines to deny coverage of treatments from guidelines that do meet IOM standards.

Dr. McManus is a Founder of the Tick Borne Diseases Unit at the University of Sydney and a Board Director of International Lyme and Associated Diseases Society (ILADS). ILADS is a medical society that developed the patient-centered treatment guidelines that meet the IOM’s standards.

Dr. McManus is very concerned by the lack of diagnostic tools for the thousands of Australian patients who show symptoms of tick borne diseases but never test positive for Lyme disease because they have variant forms of relapsing fever. According to McManus, poor diagnostic tools and lack of clinical familiarity leave most of these patients untreated.

“Every patient has a right to health in the context of scientific uncertainty. Lyme disease is a biological condition that requires care,” says Bioethicist Diane O’Leary, of the Kennedy Institute of Ethics at Georgetown University. “No health organization can adopt or support any Lyme disease policy that obstructs patient access to biological medical care due to the unnecessary harm that may result from denying care. It can’t be ethically justified.”

Prof. Christian Perronne is an internationally renowned Infectious and Tropical Diseases specialist with over 300 scientific publications and has played an advisory role to WHO. Prof. Perronne asked the Special Rapporteur, “How can any treatment options be withheld from these very sick patients? This goes against the Hippocratic oath of do no harm. In France, I have used prolonged treatment options longer than six weeks to successfully help thousands of patients.”

The representatives also attended the Special Rapporteur’s annual presentation to the United Nations Human Rights Council and met with official and diplomatic delegates from many nations to discuss their concerns.

According to Ad Hoc Committee and Global RBCC founder Luché-Thayer, this is just the beginning of their actions. “We will report any government agency, medical board, medical society or health insurance company that interferes with these human rights, said Luché-Thayer. “We are stakeholders with a global reach and an international presence and the Special Rapporteur has the mandate to investigate all these abuses.”

Rock on, Jenna!

Category:

Activism, Lyme, Treatment