Archive for the ‘Activism’ Category

OPINION: How Many Cases of Lyme Disease Are We Missing?

https://www.thechronicleherald.ca/opinion/opinion-how-many-cases-of-lyme-disease-are-we-missing-327404/

OPINION: How many cases of Lyme disease are we missing?

Published: June 27, 2019

Black-legged, or deer ticks are not the only kind of tick that can transmit disease, dog ticks like the one shown here and have been found to carry a number of things, writes Donna Lugar. - 123RF
Black-legged, or deer ticks are not the only kind of tick that can transmit disease, dog ticks like the one shown here and have been found to carry a number of things, writes Donna Lugar. – 123RF

DONNA LUGAR

I participated in a “Tick Talk” in Bedford with Lisa Ali Learning of AtlanTick on June 25. One takeaway from that meeting, for me anyway, is that we are not doing enough to ensure Nova Scotians are adequately aware of the risks associated with tick bites. One family, new to the country, had never even heard of ticks before one recently attached to their child.

Although there has been a steady increase in awareness initiatives over the past few years, we need to continue to do more to reduce the number of new cases of Lyme and tick-borne diseases. One way to do this is through more “in your face” awareness, such as signage, print media and radio/TV alerts. Nova Scotians need to reach out to all three levels of government to request that more is done.

Nova Scotians need to know that any tick that bites them could potentially transmit an illness. Black-legged (deer) ticks are not the only kind of tick that can transmit disease, and Lyme is not the only thing we need to worry about. Dog (wood) ticks have been found to carry a number of things, and Lone Star ticks have been found sporadically within the province. As well, migratory birds could be dropping other types of ticks within the province that we haven’t even discovered yet. Any tick that bites a human could potentially be carrying disease — sometimes multiple illnesses.

Symptoms can vary from person to person, with some not showing any outward, visible signs, so medical professionals need to listen to their patients and start to put two and two together.

Please learn what preventative measures to take and how to properly remove attached ticks. This document, which I prepared, provides a lot of information, including how to remove a tick, what to do to prevent tick bites, as well as outlining a number of potential co-infections.

We also need to do more to ensure that those bitten receive a quick diagnosis and appropriate treatment. It’s time our doctors learn that, according to the Canadian Adverse Reaction Newsletter, Volume 22, Issue 4, October, 2012, there are at least three possible reasons for a false negative ELISA/Western Blot.

  • The fact that the test is performed too early (which most are aware of)
  • It could be a different strain of the Borrelia bacteria not picked up by the test (we also have Borrelia miyamotoi in the province, which can cause a Lyme-like illness and doesn’t generally present with a rash)
  • Antibiotic use. If you were put on antibiotics for something between the bite and the test, or only received a one-day prophylactic treatment upon the bite, you could always test false-negative.

According to Conquering Lyme Disease, a book by doctors at the Columbia University Medical Center, “false negative rates on the ELISA have been reported as high as 67 per cent in early Lyme disease and 21 per cent in early neurologic Lyme disease.” The potential for people to not form enough antibodies to be picked up by the test is also possible.

If your test is negative, it doesn’t mean you do not have Lyme!

There is a proviso in Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease in Nova Scotia that states, on page five, No: 3, under IDEG Recommends: “Patients presenting with a non-specific febrile illness, but no EM–like rash, AND a recent, clear exposure in an area at moderate or higher risk for Lyme disease (https://novascotia.ca/dhw/CDPC/lyme.asp) should be tested and monitored for other symptoms suggestive of Lyme disease. Repeat testing in 4-6 weeks is suggested if there are still concerns that the patient has Lyme disease.” I have only heard from a few people who received repeat testing and that was usually at their own insistence.

Also very important to note is that Lyme is supposed to be a clinical diagnosis, with testing supplementary. Unfortunately, doctors may recognize the better-known bull’s-eye rash, but that is only seen in 20-30 per cent of cases (if that). Other types of erythema migrans rashes are more common. About 20 per cent do not get any rash (Borrelia miyamotoi, perhaps?), while many that do don’t see it because it is tucked away somewhere not easily visible, just like the ticks like to be.

Symptoms can vary from person to person, with some not showing any outward, visible signs (such as an erythema migrans rash, Bell’s palsy, or swollen, hot knees), so medical professionals need to listen to their patients and start to put two and two together. That includes changes in mental health, new digestive issues, new sensitivities to scents, sounds, light and food, migrating pain, more frequent headaches, changes to heartbeats, and so much more that can be suggestive of Lyme and tick-borne diseases.

Rather than immediately dismissing Lyme and tick-borne diseases, as many doctors are still doing to this day, they need to realize that this issue is not rare, hard to get or easy to treat.

In other words, it is very hard to get a diagnosis if you do not see the tick, get the bull’s eye rash version of the erythema migrans rash, and/or test positive on both the ELISA and confirmatory Western Blot.

How many are we missing?

Donna Lugar is Nova Scotia representative of the Canadian Lyme Disease Foundation and founder of the N.S. Lyme Support Group. She lives in Bedford.

 

Category:

Activism, Lyme, Psychological Aspects, Testing, Ticks, Transmission

What You Need To Know About Bug Sprays

 Approx. 9 Min.

What You Need to Know About Bug Sprays

By LYMETV

https://lymetv.org

For more on tick prevention:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

https://madisonarealymesupportgroup.com/2019/06/16/study-shows-effectiveness-of-factory-treated-permethrin-impregnated-clothing-works/

https://madisonarealymesupportgroup.com/2018/05/27/study-conforms-permethrin-causes-ticks-to-drop-off-clothing/

https://madisonarealymesupportgroup.com/2019/06/08/ticks-are-out-for-the-summer-how-can-bites-be-prevented/

https://madisonarealymesupportgroup.com/2018/04/03/fire-good-news-for-tick-reduction/

https://madisonarealymesupportgroup.com/2018/09/15/talking-tick-prevention-ask-a-uw-veterinarian/

 

 

 

Category:

Activism, Prevention, Ticks

Touched By Lyme: Singing From the IDSA Lyme Hymnal

https://www.lymedisease.org/mandavilli-response/

TOUCHED BY LYME: Singing from the IDSA Lyme hymnal

 

Imagine the following scenario: A woman finds a lump in her breast, gets diagnosed and treated for early breast cancer—and recovers beautifully. She goes on to live a long and healthy life.

Here’s another scenario. A different woman develops breast cancer. She requires a long and difficult treatment regimen. It’s not only an ordeal for her, but is extremely hard on her entire family. Eventually, she too recovers, but the family still reels emotionally from the whole experience.

And finally, this: A third woman gets breast cancer. After a long medical struggle, sadly, she dies from the condition. Her family and friends are devastated.

What would you think if the first woman then wrote an article for a leading national newspaper saying that breast cancer is no big deal? After all, she had it and she got better. So why do people whine about it? Why such concern about an illness that is easily treated and cured?

I think many readers would take offense at that. Especially anyone with a family member who has had breast cancer, whatever the outcome.

That’s how lots of parents of children with Lyme disease feel after reading the following article in the New York Times: My Son Got Lyme Disease. He’s Totally Fine. 

In the article, journalist Apoorva Mandavilli recounts how her 9-year-old son woke up one morning in their Brooklyn home with a swollen knee. (A symptom that often goes along with Lyme disease, especially in children.)

“We saw a couple of doctors, who ordered various X-rays and scans. When an M.R.I. showed inflammation in Akash’s knee and ankle, the orthopedist we saw called to say it could be juvenile arthritis or any of a long list of autoimmune or inflammatory disorders.”

The importance of playing squash

Apparently, none of these physicians even thought to consider Lyme disease as a diagnosis. In fact, the topic of Lyme only came up—eventually—while her husband played squash with their pediatrician.

(Is this Mandavilli’s advice? If you live in a Lyme-endemic area and your child has a symptom that’s highly associated with Lyme disease —make sure to play sports with the kid’s doctor, because otherwise no one will think of it.)

The failure of doctors to suspect Lyme when other signs may point to it, is precisely when the health of so many children gets derailed. These kids who actually have Lyme and/or other tick-borne diseases instead get sent down the false pathways of juvenile arthritis or other off-target diagnoses. Because they are never properly evaluated, they don’t get rightly diagnosed and treated. As a result, many suffer a variety of ills for YEARS.

“Once we knew he had Lyme disease,” Mandavilli writes, “he took a four-week course of doxycycline, plus an antacid and a probiotic to minimize the side effects of the antibiotics. And that was it.”

She further states:

“As we discovered in the few weeks of his diagnosis and treatment, many people view Lyme — wrongly — as a debilitating, chronic illness instead of what it is: An easily treated infection with no long-term consequences for children, or even the vast majority of adults.”

To which I say to Ms. Mandavilli: How fortunate for you and your family that your son responded well to a short course of antibiotics. But HOW DARE YOU presume that because your child lucked out in this case, Lyme is therefore an “easily treated infection with no long-term consequences for children”?

Long-term consequences

Back in the mid-2000s, my then-teenage daughter spent three years in a wheelchair due to Lyme disease. Believe me, the “long-term consequences” lasted far beyond those three years. And I know of many children—and adults—who are wheelchair/bedbound for much longer than that. Some eventually recover and some don’t.

Furthermore, I regularly hear from families whose Lyme-infected children suffer intense pain, fatigue, gastrointestinal upsets, learning disabilities, seizures, behavioral issues and/or psychiatric problems. The effects on all members of the family—not just the ones with Lyme—are far-reaching.

In a tragic story that still reverberates through the Lyme community, in 2013, a New York state teenager named Joseph Elone returned from summer camp with what seemed like the flu. Not long after he tested negative on the standard test for Lyme disease, he suddenly collapsed outside his family’s home and died.

An autopsy showed Lyme spirochetes in his liver, heart, lungs and brain. The official cause of death was Lyme carditis—a condition which interferes with electrical signals in the heart. (Click here for a comprehensive account of Joseph’s story.)

Ms. Mandavilli, why don’t you tell the Elone family that Lyme is an “easily treated infection with no long-term consequences for children”?

Quoting Shapiro

In her article, Mandavilli quotes Dr. Eugene Shapiro, who states:

“When it turns out to be Lyme disease, we go to the parents and say, ‘Great news, it’s Lyme disease, that’s the best thing it could be’…It’s baloney that you can’t cure Lyme disease, it’s eminently curable.”

Dr. Shapiro is well known to the Lyme community. In fact, in recent weeks, more than 24,000 people have signed a petition to have him removed from the federal Tick-Borne Disease Working Group. He has unacceptable financial conflicts of interest, and a long record of working against the benefit of patients. (Click here for more about why we oppose him and to sign the petition.)

Shapiro protest

I’m disappointed that someone who lists her occupation as “science journalist” paints such a narrow picture in this article. She quotes three doctors who all sing from the IDSA’s Lyme hymnal, and then extrapolates that the experience of all families should match her own.

Her family may have won the lottery this time. But that fact shouldn’t obscure the very real suffering of vast numbers of children and adults with Lyme disease–and the long-term consequences it can bring.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

__________________

For more: https://www.lymedisease.org/nyt-article-raw-nerve-lyme/

500 comments later, I’m sure Mandavilli is rethinking her article.

The sad fact is that the outcome to this case might not be over. I would be careful about celebrating too early as Lyme/MSIDS is connected with many other illnesses that may not rear their ugly little heads until later: https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/

https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/

https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/

https://madisonarealymesupportgroup.com/2019/04/28/lyme-disease-lecture-notes-microbiologist-tom-grier/

https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

It’s also known fromLyme literate physicians that multiple tick bites make for more complex illness:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

The little boy in this story could very well obtain more tick bites throughout his life. Each one has the potential to muddy the waters with new pathogens and strains. Anyone who takes the time to read about these pathogens will come away with a new found respect for microbes and their ability to survive.

Mandavilli obviously hasn’t done this.

Few are considering the down-stream effects of Lyme/MSIDS.

 

 

 

 

Category:

Activism, Lyme, Treatment

Lee Files Formal “Notice of Appeal” Against the CDC & Will Go to the Supreme Court if Necessary

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24757380?

Lee files formal “Notice of Appeal’ against the CDC and will go to the Supreme Court if necessary

JUN 27, 2019 — 

Please see today’s letter addressed to Congressman Chris Smith…..

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

WAKE UP AMERICA!

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, chris.smith@mail.house.gov
Cc: (98 Undisclosed Recipients)
Date: June 27, 2019 at 9:12 AM
Subject: Lee files formal “Notice of Appeal’ against the CDC and will go to the Supreme Court if necessary

June 27, 2019

U.S. Congressman Chris Smith
2373 Rayburn House Office Building
Washington, D.C. 20515
chris.smith@mail.house.gov

Dear Rep Smith,

I would like to call attention to page 40 of the 2018 Tick-Borne Disease Working Group report to Congress…..
https://www.hhs.gov/sites/default/files/tbdwg-report-to-congress-2018.pdf

“Metagenomic sequencing of DNA/ RNA and proteomics can be used to identify tick-borne pathogens in clinical samples”

I would also like to point out that Paul Mead of the CDC coauthored the following Schutzer et al paper:

Direct Diagnostic Tests for Lyme Disease
https://www.ncbi.nlm.nih.gov/pubmed/30307486

“Serologic tests cannot distinguish active infection, past infection, or reinfection. Reliable direct-detection methods for active B. burgdorferi infection have been lacking in the past but are needed and appear achievable.
_____________

In September of 2012 the CDC entered into an agreement with Dr. Lee to evaluate the viability of his DNA sequencing technology and Martin E. Schriefer, Ph.D., the chief of the CDC’s diagnostic and reference laboratory, stated the following: (from the attached court document)
https://www.dropbox.com/s/8irsb6oqunwy3zq/Notice%20of%20Appeal.pdf?dl=0

“So wherever possible we encouraged and required other non-serologic-based tests  in addition to clinical presentation so that might have included PCR or culture or both. . . . And again I’m looking forward to seeing a greater utilization of PCR as a diagnostic tool in the future.”

When Dr. Lee published a case of persistent infection (Chronic Lyme disease) in 2014 all communication with the CDC came to an abrupt end with no explanation.

DNA Sequencing Diagnosis of Off-Season Spirochetemia with Low Bacterial Density in Borrelia burgdorferi and Borrelia miyamotoi Infections
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4139787/

It should be noted that the chronic Lyme disease case was found in blind-coded serum samples sent to Dr. Lee’s laboratory from the CDC’s Lyme disease serum repository. It should also be noted that other species of Borrelia were found within these samples using DNA sequencing and the CDC had no idea that multiple pathogens were involved.

Public outcry over the severity of Lyme disease has been ignored for decades while our health officials have been bamboozled by a handful of academics and the Infectious Diseases Society of America all named in a racketeering lawsuit. The U.S. Centers for Disease Control has aligned itself with these defendants involved in the brainwashing of our medical community and general public while focusing on the acute stage of disease after bulls-eye rash. Untreated/misdiagnosed Lyme is horribly, horribly disabling with no known short term treatment as described in Kris Newby’s personal account of her family’s ordeal:

It felt like the flu. It took 10 doctors, a year, and $60,000 to get an answer.
https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health

Public outcry has been ignored over propaganda/dogma as the CDC has known for decades that current antimicrobials are ineffective for treating this antibiotic resistant/tolerant superbug after culturing the spirochete in their Colorado laboratory in 1991 from a patient who previously underwent oral and intravenous treatment. [1]

“Smith says the lack of federal attention to eradicate Lyme disease is a scandal. He feels those involved should be held accountable, either civilly or criminally.”

http://newjersey.news12.com/story/40577666/rep-smith-federal-funding-for-tickborne-diseases-is-a-joke

So I ask the question Representative Smith, “How much more evidence do we need that a crime has been committed?” The CDC has suppressed Dr. Lee’s direct detection test for the diagnosis of Lyme disease at its early and most treatable stage of infection. These people are hiding behind the government lawyers to avoid accountability as the CDC does not want to answer any questions in the open.

Those who are responsible for this crime are obviously in control as we see Eugene Shapiro (defendant in the RICO lawsuit) appointed to the Tick-Borne Disease Working Group.

Where is the criminal investigation???

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

Reference:

[1] Letter to Brenda Fitzgerald MD Director CDC with lab/autopsy reports  https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0

______________________

For more:  https://madisonarealymesupportgroup.com/2018/05/15/news-release-on-57-1-million-lyme-disease-lawsuit-filed-against-cdc/

Category:

Activism, Lyme, Testing

Doctors at Many Stem-Cell Clinics Don’t Have Relevant Training

https://www.nature.com/articles/d41586-019-01999-6?

Doctors at many stem-cell clinics don’t have relevant training

Few US clinics offering unproven treatments employ physicians with expertise in all the conditions they offer to treat, finds survey.
Photo of a syringe containing cells prepared for stem cell therapies for a patient

A clinician prepares a syringe containing stem cells used for therapy.Credit: Patrick T. Fallon/Getty

Many companies offering unproven stem-cell therapies in the United States do not employ clinicians with relevant medical training, an analysis has found.

Fewer than half of the 166 businesses analysed in the study employed physicians whose formal medical training covered the conditions the company claimed to treat, according to the paper, which was published on 25 June in JAMA1.

“This study highlights that patients need to be aware that many physicians who advertise stem-cell treatments are not only operating outside the bounds of scientific evidence, but outside their own professional qualifications,” says Douglas Sipp, a researcher at the RIKEN Center for Biosystems Dynamics Research in Kobe, Japan.

The only stem-cell-based products that are approved by the US Food and Drug Administration (FDA) as medical treatments are blood-forming cells used to treat certain blood and immune-system disorders. Stem cells taken from healthy bone marrow are also used in transplants to treat some cancers. Yet in the past decade or so, hundreds of clinics have sprung up in the country offering stem-cell treatments for a wide range of other conditions, including muscular dystrophy, Alzheimer’s disease and vision loss.

In the United States, stem cells can be extracted and reinjected into people without FDA approval as long as the cells have been only “minimally manipulated”. Companies have argued that their procedures therefore do not need approval — but many bioethicists disagree, claiming that many of the procedures they offer should be classified as drugs, biologics or medical devices, which the FDA must approve for use.

Background checks

The analysis looked at the websites of 166 companies that were advertising their services in January 2018 and that listed their clinical staff online.

Nine companies did not list any physicians. Five of these were staffed entirely by podiatrists; two by naturopaths, who use interventions such as homeopathy and acupuncture; and one by dentists.

Of the companies that employed doctors, just 81 listed physicians who had medical training that the researchers deemed was necessary to cover all of the conditions the firms’ clinics offered to treat (see ‘Stem-cell doctors’).

Source: Ref. 1

Businesses offering unproven stem-cell treatments for orthopaedic conditions — among the most common conditions for which such therapies are offered — were more likely to employ trained doctors: 77% listed one or more physicians with formal training in orthopaedics. But only 19% of practices offering to treat non-orthopaedic conditions employed physicians with relevant specialist training.

“Patients need to ensure they look at trusted sources of information and consider the backgrounds of physicians when considering medical care, including regenerative care,” says Zubin Master, a bioethicist at the Mayo Clinic in Rochester, Minnesota, who led the study.

Master acknowledges that some of the physicians employed by the companies might have gained relevant further qualifications beyond their formal medical training.

doi: 10.1038/d41586-019-01999-6

References

  1. Fu, W. et al. J. Am. Med. Assoc. 321, 2463–2464 (2019)

___________________

**Comment**

As always, “Buyer Beware,” when it comes to treatments.

https://www.treatlyme.net/guide/stem-cell-therapy-lyme  Great article by Dr. Ross.  Excerpt:

What The Data Says

However, most with Lyme disease do not appear to benefit from stem cell therapy as it is currently practiced. My Lyme Data, an ongoing research project of lymedisease.org, shows only three percent of patients receiving stem cell therapy report improvements. For more information about this study see: What Alternative Treatments Work for Lyme Disease? What Are Their Side Effects? at lymedisease.org

On the other hand, there are some case reports in the literature which show marked improvement in Lyme disease by people who undergo stem cell therapy using human embryonic stem cells (HESC).

My Lyme Data’s findings are instructive, but could be limited by the small number of people who have had stem cell therapy. Also, not all stem cell therapies are equal. And My Lyme Data does not indicate what type of stem cell therapy people received.

My Observation

Before stopping my Seattle clinical practice in late 2018, I did not observe major improvements in most of my patients who tried stem cell therapy either before or after having treatment with me. I did not have any of my active patients pursue this type of therapy while they were under my care.

https://www.publichealthalert.org/stem-cell-therapy-for-lyme-disease.html

https://lymediseaseguide.net/stem-cell-treatment-for-lyme-disease

I know few who have used stem cell therapy for Lyme disease, but it’s expensive and make sure if you are considering it ask many, many questions. Patients can spend thousands and not be informed up front of the lengthy & costly follow up treatments that were not included in the original price.

Unfortunately, those I know did not improve.

Category:

Activism, Treatment