Archive for the ‘Lyme’ Category

Breast Cancer & Lyme Disease: One Woman’s Message

https://danielcameronmd.com/breast-cancer-lyme-disease-patient/

BREAST CANCER AND LYME DISEASE: ONE WOMAN’S MESSAGE

cancer in lyme disease patient

Rarely, do we read about patients with cancer also suffering from Lyme disease. But many do. A courageous 46-year-old woman shares her heartbreaking story of battling terminal breast cancer. In the article, published by Glamour magazine, she describes her frustration with medicine and how her experiences as a Lyme disease patient affected her decisions in seeking medical help.

By

The woman, a mother to three boys, initially assumed a lump in her breast was due to Lyme disease. “Before I was diagnosed with breast cancer, I thought a lump I had found was part of my Lyme disease. I thought, ‘Okay, let me just watch this and see if it goes away over the next month’,” she tells Glamour reporter Jillian Kramer.

She explains that having cancer had never occurred to her and as a Lyme disease patient she had become accustomed to being judged and was worried about how medical professionals would view her complaints.

“I’d gone through a long bout with Lyme disease and had a lot of experience being blown off by doctors,” she says. “I had even gotten into the habit of blowing things off. I’d say, It’s probably nothing.

“I’d put it [breast lump] off for such a long time, thinking that people would think I was being silly.”

After her diagnosis of Stage IIIC breast cancer, the woman underwent chemotherapy, radiation, and a double mastectomy. Unfortunately, she relapsed a month after completing treatment and was diagnosed with Stage IV cancer.

She cautions others. “Even if you’re worried about being wrong, see a doctor.”

Editor’s Note: This courageous woman passed away in December of 2019 but her story is an important reminder to readers, particularly Lyme disease patients, to always follow-up with your doctor when a new symptom emerges. Do not assume a new symptom is Lyme-related, even when you’ve had a history of Lyme disease.

References:
  1. Kramer, Jillian.This Mom Has Terminal Breast Cancer, But She’s Still Fighting for Her Kids. Glamour magazine, October 31, 2019.

________________

**Comment**

Such a disheartening story, although not surprising.  I know many Lyme/MSIDS patients who have actually developed a fear of white lab coats due to being abused by medical professionals who say the most damaging things to them.  Patients are still being told they are “making up” their illness or just wanting attention:  https://madisonarealymesupportgroup.com/2019/05/27/have-you-been-told-its-all-in-your-head-the-new-biology-of-mental-illness/

https://madisonarealymesupportgroup.com/2019/05/27/uk-woman-isolated-pumped-full-of-anti-psychotics-told-its-all-in-her-head-until-finally-diagnosed-with-lyme/

https://madisonarealymesupportgroup.com/2017/09/21/its-all-in-your-head-until-finally-a-lyme-diagnosis/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

https://madisonarealymesupportgroup.com/2019/11/29/its-all-in-your-head-medicines-silent-epidemic/

https://madisonarealymesupportgroup.com/2019/11/22/differentiating-psychosomatic-somatopsychic-multisystem-illnesses-and-medical-uncertainty/

Category:

Lyme, Uncategorized

Going Outdoors? Be Aware That Ticks Are Starting to Stir

https://www.thechronicleherald.ca/opinion/local-perspectives/donna-lugar-going-outdoors-be-aware-that-ticks-are-starting-to-stir-430692/#.XoH6VeE1ChI.linkedin

DONNA LUGAR: Going outdoors? Be aware that ticks are starting to stir

Published: Mar 27 at 4:36 p.m.
Black-legged ticks are shown at different stages of feeding. Black-legged ticks, also known as deer ticks, carry the bacteria that causes Lyme disease. FILE PHOTO
Black-legged ticks are shown at different stages of feeding. Black-legged ticks, also known as deer ticks, carry the bacteria that causes Lyme disease. FILE PHOTO – Contributed

DONNA LUGAR

With all the talk about COVID-19, don’t forget your tick protection if de-stressing outside

Although ticks can be active at any time of the year when temperatures permit, they are now becoming more active. When spending any time outdoors, please remember to undertake preventative measures and ensure that you are doing your daily tick checks. Although I realize many are presently spending more time indoors, there are people taking this time to work in their yards and spending more time outdoors with their family and pets. As well, with the closure of groomed trails, beaches, etc., many may head to areas less travelled. Prevention is key!

I frequently receive calls and emails from Nova Scotians throughout the province wondering if they may have Lyme disease. One of the first things I suggest is for them to review a symptom list, either from the Canadian Lyme Disease Foundation website or from any government website that breaks down the three stages of Lyme. I then suggest that they take the Horowitz Lyme-MSIDS Questionnaire disease, which will give them an idea as to whether they may have Lyme and/or a tick-borne disease. As well, in December of 2019, the following research article was posted in Frontiers in Medicine: The General Symptom Questionnaire-30 (GSQ-30): A Brief Measure of Multi-System Symptom Burden in Lyme Disease. This is a very helpful document for both you and your doctor.

Depending on their score on the Horowitz Questionnaire, I then suggest that they go back to their doctor, if they are lucky enough to have one, and request the ELISA blood test for Lyme. However, I also advise that this test has sensitivity and specificity limitations and a negative test does not necessarily mean they do not have Lyme disease.

Of importance to note, there are treatment guidelines for Lyme disease in this province. Unfortunately, it appears that not all doctors are aware of this. Although these guidelines follow the IDSA Guidelines, which are presently being updated, they do not include what I believe to be a very important caveat included in the actual IDSA guidelines:

“It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

It is my opinion that this very important caveat should be included within our guidelines and that your doctor knows that it exists.

Another document that exists that many are not aware of is the N.S. Tick Borne Diseases Response Plan. This plan has a lot of important information. It also notes other potential illnesses that can be transmitted. Just be aware that researchers at Dalhousie have found even more and that they have found things in both the black-legged (deer) and dog (wood) ticks.

If you wish to learn more about Lyme and tick-borne diseases there are now YouTube videos available for most of the presentations made at the Bridgewater Lyme Conference on Nov. 16 and 17, 2019. This YouTube channel also has prevention videos and so much more.

As the Nova Scotia representative of the Canadian Lyme Disease Foundation (CanLyme), you can always reach out to me. My contact info is on the CanLyme website.

On a final note, there is presently a petition making the rounds in Nova Scotia that will hopefully be presented to the Nova Scotia legislature in the fall of this year. There are five asks. If you would be interested in having a copy to help obtain signatures, or are interested in signing, please let me know via donna.lugar@ns.sympatico.ca. The petition is a paper one, as that is what Nova Scotiá’s legislature requires. With the present circumstances, it will take some effort to get a sufficient number of signatures to make the petition worthwhile. Any help you can give would be appreciated.

Remember, ticks can be active all year, depending upon temperatures. Bites are usually painless and many are missed; not everyone gets an erythema migrans rash, of which the bull’s eye is just one manifestation.

Prevention is key, but even the most vigilant can miss a tick. Make yourself knowledgeable.

Donna Lugar is the N.S. representative, CanLyme. She lives in Bedford.

__________________

**Comment**

This article does not mention that there are other treatment guidelines in use by ILADS:  https://www.ilads.org/patient-care/ilads-treatment-guidelines/

If doctors follow the IDSA guidelines, treatment will be short term and typically a mono therapy, rather than an overlapping treatment using numerous antimicrobials for Lyme as well as coinfections for a much longer period of time should symptoms warrant it.

Personally, I have found the Horowitz questionnaire to be far more accurate than current 2-tiered CDC testing which depending upon who’s counting, misses over half of all cases: https://madisonarealymesupportgroup.com/2019/06/07/if-youre-testing-for-lyme-disease-heres-what-you-should-know/

https://madisonarealymesupportgroup.com/2018/12/16/laboratory-testing-for-lyme-disease/

https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/

https://madisonarealymesupportgroup.com/2018/01/16/2-tier-lyme-testing-missed-85-7-of-patients-milford-hospital/

https://madisonarealymesupportgroup.com/2018/10/13/direct-test-for-ld-carl-tuttle-chews-up-cdc-spits-them-out/

https://madisonarealymesupportgroup.com/2018/10/12/direct-diagnostic-tests-for-lyme-the-closest-thing-to-an-apology-you-are-ever-going-to-get/

KEY QUOTE: “THESE SEROLOGIC TESTS CANNOT DISTINGUISH ACTIVE INFECTION, PAST INFECTION, OR REINFECTION.”

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

https://madisonarealymesupportgroup.com/2019/07/18/frequent-prescribed-fires-can-reduce-risk-of-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2020/03/19/are-current-tick-prevention-methods-for-dogs-working/

 

 

 

 

Category:

Lyme, Prevention, Testing, Treatment

Marsy’s Law in Light of Lyme Disease

A federal judge did not delay Wisconsin’s presidential primary but he stated those voting absentee be given an extra six days.  Deadline for absentee ballots is now 4 p.m. on April 13. Deadline for voters to request absentee ballots is today at 5 p.m.  Voting in person is Tuesday, April 7.  https://apnews.com/e36c3adc0c7474014f3e7ab566071303

On the ballot is a referendum called Marsy’s Law.  

Please study this for yourself:  https://ballotpedia.org/Wisconsin_Marsy%27s_Law_Crime_Victims_Rights_Amendment_(April_2020)

Marsy’s Law, meant with good intentions, would present grave risks to the constitutional protections for citizens of Wisconsin accused of crimes.

Here’s some information that should be taken into consideration.

  • Voters are asked to make a substantial constitutional change without text of the proposed amendment.
  • The Montana Supreme Court struck it down as unconstitutional as it contains multiple amendments, each of which should require a separate vote.
  • Section 9m, article I of the Wisconsin Constitution already provides victims with many of the same constitutional rights, making Marsy’s Law redundant.
  • South Dakota reportedly spent a half-million dollars in the first year alone responding to the constitutional mandates created by Marsy’s Law.
  • Wisconsin judges, prosecutors, law enforcement agencies and victim rights coordinators would have to interpret unclear mandates, creating additional burdens on justice officials and taxpayers.

Lastly, the one that really trumps all others:

Because Lyme/MSIDS is a systemic infection that can and often affects the brain and cognitive behavior of patients, they can unfortunately have run-ins with the law due to erratic behavior.

A few cases:

  1. https://www.foxnews.com/story/can-lyme-disease-lead-to-insanity-violent-tendencies
  2. https://madisonarealymesupportgroup.com/2019/03/21/bartonella-sudden-onset-adolescent-schizophrenia-a-case-study/
  3. https://madisonarealymesupportgroup.com/2017/08/24/dutch-lyme-patients-accused-of-child-abuse/
  4. https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/  Children with PANS often have an underlying tick-borne illness.
  5. Dr. Bransfield states that YES, Lyme disease CAN cause violent behavior & substance abuse:  https://madisonarealymesupportgroup.com/2019/09/17/ignoring-psychiatric-lyme-disease-at-our-peril/

To this day authorities won’t recognize the connection between tick-borne illness and mental issues:  https://madisonarealymesupportgroup.com/2018/06/04/ld-diagnosis-took-forever-because-of-mental-health-stigma/

So, back to Marsy’s Law….hopefully it’s clear that tick-borne illness can cause violent and erratic behavior which could lead to being accused of crimes. Accusers wouldn’t have to present any evidence.  

Patients would be guilty until proven innocent.
For patients struggling cognitively, accusers would have unfair advantage.

Lastly, please read this:

The U.S. Constitution and all 50 state constitutions guarantee defendants’ rights because they are rights against the state, not because they are valued more by society than victims’ rights. Defendants’ rights only apply when the state is attempting to deprive the accused – not the victim – of life, liberty, or property. They serve as essential checks against government abuse, preventing the government from arresting and imprisoning anyone, for any reason, at any time.

Victims’ rights are not rights against the state. Instead, they are rights against another individual. The Marsy’s Law formula includes the rights to restitution, to reasonable protection, and to refuse depositions and discovery requests, all of which are enforced against the defendant. Such rights do nothing to check the power of the government. In fact, many of the provisions in Marsy’s Law could actually strengthen the state’s hand against a defendant, undermining a bedrock principle of our legal system — the presumption of innocence.  https://www.aclu.org/blog/criminal-law-reform/victims-rights-proposals-marsys-law-undermine-due-process

Category:

Activism, Lyme, Psychological Aspects

CDC: Centers For Damaged Credibility

https://cnsnews.com/commentary/michelle-malkin/michelle-malkin-cdc-centers-damaged-credibility

COMMENTARY

Michelle Malkin: CDC: Centers for Damaged Credibility

By Michelle Malkin | March 11, 2020
Excerpt:

CDC has one primary job — Disease Control — but has managed to botch it without ever learning from past failures.

(See link for article)

____________________

**Comment**

In this astute piece, Malkin outlines CDC past failures:

  • 1976 swine flu scandal whipped up by CDC junk scientists to develop another vaccine that resulted in an increased risk of GBS
  • 1999 CDC misspent $22.7 Million for CFS
  • 2000 CDC lied to congress on how it spent $7.5 Million on hantavirus
  • 2001 CDC squandered $13 Millin for Hepatitis C research
  • 2009 CDC recalled 800,000 doses of swine flu vaccine – failed potency tests
  • 2012 CDC leaked anthrax, SARS, monkeypox – faulty airflow system
  • 2014 CDC’s lack of response to Ebola exposed travelers.  $15 Million worth of isolation chambers sat in a warehouse
  • CDC continues fear campaign pushing people to get flu shot using flawed data (read:  https://madisonarealymesupportgroup.com/2020/04/02/coronavirus-if-they-lied-then-why-wouldnt-they-lie-now/)
  • 2020 CDC lies about vaccines causing autism – continues to smear critics
I would like to add to this list (although this is hardly a conclusive list):
  • 2009 CDC finds hardly any cases of Swine Flu was Swine Flu or any sort of flu – but hides it from public
  • 2009 CDC stops counting Swine Flu cases yet miraculously estimates there are 22 MILLION cases fear-mongering the public into getting vaccinated
  • 2012 CDC states Morgellons is not infectious – just cotton fibers. To this day they will not accept independent researching showing borrelia involvement.
  • 2015 CDC scientist admits vaccine authors destroyed evidence of harm caused by MMR vaccine
  • 2016 CDC states there is insufficient evidence that Zika causes microcephaly, but weeks later, after plopping it into “Shepherd’s’ criteria” they magically announce it does (despite it meeting only 3 of 7 criteria)
  • 2016 CDC scientists create group SPIDER (Scientists Preserving Integrity, Diligence and Ethics in Research) and cite numerous scandals involving scientific corruption within CDC
  • 2017 CDC spends $222 million on Zika based on one autopsy – but runs out of money and begs for more
  • 2017 CDC completely ignores research showing 5 out of 5 brains of children with autism have high levels of aluminum
  • CDC uses front groups (NACCHO, ECBT, AAP, IAC) to combat health freedom
  • 2020 CDC refuses accurate COVID-19 tests, insists on using its own. To this day does not have an accurate test, thereby making all U.S. numbers meaningless due to faulty testing
  • 2020 CDC Dr. Fauci secures $2 billion for COVID-19 vaccine, despite research on the SARS vaccine showing poor outcomes – even deaths, fast tracks COVID-19 vaccine (bypassing animal testing, and using limited human testing). Even vaccine proponents are worried.
  • 2020 CDC breaks basic principle of medicine. Whenever there is a death and COVID-19 is detected, the virus is automatically assigned as the cause of death giving a false high death rate. 
  • 2020 CDC continues to downplay Lyme/MSIDS pandemic
  • CDC refuses to acknowledge research showing persistent infection
  • CDC continues to push their outdated and flawed testing
  • CDC vilifies any lab doing testing other than the ones they approve of
  • CDC continues to push their unscientific, flawed guidelines
  • CDC continues to publish flawed data on their website
  • CDC only admits correct facts when a vaccine is being prepared to illicit public demand
  • CDC uses editorials written by industry doctors to fast track a Lyme vaccine which would have little success without assistance
  • CDC’s Paul Mead used his position to push a Lyme vaccine
  • CDC used taxpayer dollars to finance the racketeering scheme identified in the Lisa Torey vs IDSA lawsuit registered in Texas District Court
This information should cause everyone to question the CDC’s stance everything – including COVID-19. They have a long, long history of fraud, deception, and conflicts of interest.  True to form – they are manufacturing and pushing a COVID-19 vaccine.

For more:  https://madisonarealymesupportgroup.com/2020/03/29/dr-fauci-pushes-for-covid-19-vaccine-despite-research-showing-vaccinated-may-get-sicker-and-even-die-lab-animals-got-sicker-too/

https://madisonarealymesupportgroup.com/2020/04/02/us-govt-johnson-johnson-prep-for-1-billion-coronavirus-vaccine-doses-implantable-tattoos-google-app-to-monitor-people/

https://madisonarealymesupportgroup.com/2020/03/27/cdcs-deadly-testing-fiasco-centralization-of-public-health-authority-a-threat-to-national-security/

Category:

Activism, Lyme, Treatment, vaccines, Viruses

How To Stay Sane in Uncertain Times

https://www.linkedin.com/pulse/how-stay-sane-uncertain-times-lori-dennis-ma-rp/?

How to stay sane in uncertain times

Lori Dennis, MA,RP

Lori Dennis, MA,RP

Registered Psychotherapist, Speaker, Author of Lyme Madness

These are times of great uncertainty. Uncharted, unprecedented times that require a sense of calm, creativity and connection.

I wish it weren’t so but the truth is that my family, along with tens of millions worldwide, have been living a similar medical nightmare for years. While chronic Lyme disease and the Coronavirus have many distinctions, the experience is parallel in many ways.

For both, there is an inability to get properly tested, a lack of access to proper care for far too many, frustration with the CDC for their lack of transparency, not enough support or resources to manage this pandemic, no viable treatment or cure, the fear of how this will impact all of us financially.

The Coronavirus, like chronic Lyme, is an experience unlike the world has ever seen and, for the most part, we are being asked to navigate this in the dark.

Here are a few simple suggestions to help you find some light in the dark:

Turn anxiety into action – High anxiety can be paralyzing. While we are certainly entitled to feel a sense of angst, unease, and even gloom and doom, it’s not productive to stay stuck in these feelings. The best way to combat these strong, often destructive emotions is to turn your angst into action.

When I was feeling paralyzed about our chronic Lyme crisis, I resolved my ‘stuckness’ by researching daily, writing a book on the subject, giving talks, blogging and creating an online platform where I could connect with and help others.

How you take action is entirely up to you and your own strengths, needs and preferences. But taking action, without a doubt, is the best way I know to take back your power in a very powerless situation.

Practice self care – When we’re experiencing tough times, we tend to forget about our own personal needs, often putting them on the back burner. This is the time to take walks, go for a run, meditate, journal, eat well, sleep well, create daily rituals that feed your body, mind and soul.

Stay connected – Whether introverted or extraverted, we are all social beings. This time of social distancing requires us to discover more creative ways to stay connected. Staying in touch with family, friends, and colleagues is critical to our health and well-being. Make more time to nurture relationships — even from a distance. Help others when possible. We are all in this collective experience together.

Reframe crisis into opportunity – The Chinese character for crisis is opportunity. Get creative. Think of ways to reframe your struggles – emotional, physical, spiritual, financial — by creating healthy new habits, developing new family rituals, designing new business practices that can benefit you and others.

I’ll be writing more about how to navigate these dark waters in the weeks to come.

Until then, stay well and stay safe. ❤️

LORI DENNIS, MA, Registered Psychotherapist. Author LYME MADNESS, Speaker, Activist, For more information, feel free to message me on LinkedIn, or email me at loridennis@talktherapy.ca

 

 

 

 

Category:

Lyme, Psychological Aspects, Uncategorized, Viruses