Archive for the ‘Activism’ Category

The Difficulty & Importance of Asking For Help

https://globallymealliance.org/the-difficulty-and-importance-of-asking-for-help/

black and white photo of handing holding a wooden heart. The heart is the only part that has color

by Jennifer Crystal

WHY IS ASKING FOR HELP SO HARD? SOMETIMES IT’S NECESSARY, ESPECIALLY WHEN YOU ARE CHRONICALLY ILL

Last winter an acquaintance sustained an injury that made it difficult for her to do any heavy lifting. She managed well enough until a big snowstorm hit her area. Her doctor warned her not to shovel her driveway. But because she lived alone, she was either going to have to ask someone else to shovel or stay snowed in.

The solution here seems simple, but it’s actually quite difficult for anyone who is a natural “helper”. As individuals, we are happy to provide help, but we’re not very good at receiving it, and even worse when it comes to asking for it. To ask for help is to show one’s vulnerability; it is to relinquish some control and recognize one’s own limitations. And that makes a lot of us uncomfortable.

A little more than a decade ago, when I was in the throes of a Lyme relapse, I was in a similar situation. I was living alone in Vermont when the state got walloped with more than two feet of snow. Stuck on my couch, barely able to address my basic needs, I wondered how I would ever dig myself out. I saw neighbors huffing and puffing as they unearthed their vehicles and driveways. I hardly knew any of them. How could I possibly ask them for help?

I resigned myself to staying indoors. But my symptoms worsened, and my doctor said I needed to start a new antibiotic. That meant going to the pharmacy, which meant digging out my car.

I paced around my apartment, trying to figure out what to do. I did not have the physical strength to shovel, no matter how badly I wanted to do it or how hard willed I believed myself. I had no choice but to ask for help; I didn’t like being in that position. It brought on feelings of shame and guilt that have often accompanied me on my Lyme journey.

I called my mom. She lived out of state and couldn’t physically help, but she suggested I call an old college friend who lived in my town.

“I can’t do that!,” I said. “He has a family to take care of! I’m sure he’s busy digging out their own cars. He works full time, too. How can I give him this big task on top of everything else he’s got going on?”

I see now that I was projecting my own fears on the response of my friend. I was trying to think of all the ways my request could be a burden on him, without allowing him a say in the matter. I assumed he’d be annoyed or put out, but those assumptions stemmed from my own discomfort.

In the past, I’d had the experience of asking the wrong person for help. Once during my illness, I planned a lunch with former colleagues. I knew I would have more energy if I didn’t have to drive myself to the restaurant, so I asked a colleague who lived nearby if she could pick me up.

“That’s really going to be tough,” she replied. “I have a lot of other things going on that morning, and picking you up would be an extra ten minutes out of my way.” I’d had to swallow my pride and when my request was rejected, I felt embarrassed and ashamed.

In fact, I’d simply asked the wrong person; that sometimes happens, just as sometimes I’m not available to help others as I’d like to. My former colleague wasn’t very understanding when it came to illness. Some people aren’t. Other people are, though, and there was no reason to believe my old friend wouldn’t be compassionate.

Finally, I bit the bullet and called. “Of course I’ll help,” he said without hesitation. “Give me an hour to finish shoveling off our cars, and I’ll be right over.” An hour later there he was, heaving piles of snow with the strength of a lumberjack, and an hour later he was finished. What seemed an insurmountable task to me had truly been no big deal to him, and he said so when I offered to pay him or at least make him some hot cocoa. “Happy to help,” he said. “Let me know if there’s anything else you need.”

I relayed this story to my injured acquaintance who was also snowed in. Together we created a shortlist of people she could ask for help.

A few days later I called to check on her. She was sacked out on her couch, her injury worse, because she’d never called anyone. She had insisted on doing the shoveling herself. She didn’t want to appear weak, she confided. And besides, no one could shovel her driveway as well as she could.

I understood where she was coming from because I’d once been there myself. Over time, though, I’ve realized that asking for help is not a sign of weakness; it actually takes a lot of strength. I also learned that it’s okay to release control over external matters from time to time, like how well the driveway will be shoveled, in order to focus on one’s precious health.

Doing so will allow you to get stronger faster, so you can get back to helping others. Until then, you can still be a natural helper from bed, just by being a good friend, a good listener, and a confident presence. If it feels overwhelming right now, that’s okay; it means that you need to take this time to focus on yourself and get well, so that one day, you can pay it forward.

jennifer crystal_2Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

Category:

Activism, Lyme, Uncategorized

Call to Challenge Minnesota Medical Review Board on Ending 5-Year Moratorium to Not Persecute Lyme Doctors

iu-33

Thomas Grier
902 Grand View Ave
Duluth, MN, 55812
218-216-5670

To: ILADS, MLA, LDA, MLA
Attention – Dr. Elizabeth Maloney, Lorraine Johnson, Pat Smith, Phyliss Mervine,

CC. Dr. Eva Sapi, Dr. Alan MacDonald, Dr. Kenneth Leigner, Dr. Robert Bransfield, Dr. Brian Fallon.

https://mnlyme.org
https://www.ilads.org
https://lymediseaseassociation.org/…/the-lyme-wars-are-not…/
https://lymediseaseassociation.org

Dear Lyme disease patient advocates and researchers,

The recent decision of the Minnesota Medical Review Board (MRB) to end their five-year moratorium to not persecute Lyme disease doctors who treat aggressively with antibiotics beyond the IDSA recommended guidelines, is a historic decision that cannot go unchallenged.

During the five-year moratorium in MN, which banned the persecution of doctors who treat tick-borne illnesses aggressively with antibiotics, the MN MRB members only cited a single patient antibiotic study for their actions. This study mostly simply looked at patient’s symptoms after antibiotic treatment.

This and other similar studies relied on the use of defective blood tests like the B-31 based ELISA serology tests, which we know only detects just one Borrelia species. The experts refusal to accept that we are now dealing with over a dozen human pathogenic Borrelia-Lyme species continues to be intolerable.

It was the hard work of several people and groups working together almost 10 years ago to get the MRB to originally agree to the moratorium to allow MN doctors to continue to treat Lyme disease as they see fit. Many of these same advocates have worked on political efforts to protect doctors and patients. Now it is time that we combine politics with PATHOLOGY.

I am asking our most influential Lyme activist groups and researchers to work together to petition our legislators to force the Minnesota Department of Health to do pathology-based brain studies to look for the persistence of Borrelia in dementia and MS brains using state-of-the-art research tools such as FISH stains, confocal Laser Microscopy, Atomic Force Electron Microscopy and more emerging technologies.

Or at the very least we must create an independent review council to review Lyme-Pathology studies published and unpublished showing persistence of Borrelia post antibiotics, and the persistence of Borrelia in the brain, and heart. A council to bring to the MRB any pathology-based associations to chronic illnesses like dementia or MS.

We all know the cost of untreated illness, but our medical insurance providers only see the cost in terms of treatments, and not the cost of long-term medical care for untreated seronegative neurologic patients.

To achieve the goal of getting a State-paid brain pathology study or a pathology review committee; groups and individuals will have to come together and form a take-action committee to define and refine our goals and to assemble teams to lobby our legislative body, our health department and the MRB.

Such topics as multiple Borrelia species, poor blood-tests, immune system evasion, and immune sequestered sites are all huge topics much too big for non-medical legislators to fully understand without proper navigation.

Please support this effort!

Thomas Grier 218-216-5670

__________________

**Comment**

For those just tuning in:  https://madisonarealymesupportgroup.com/2019/11/17/minnesota-medical-board-reinstates-sanctions-on-controversial-lyme-disease-treatment/

Microbiologist Tom Greer makes some astute observations:

  1. A study which only looks at symptoms is very subjective and certainly should NOT become a mandate on how a doctor can and can not treat
  2. There’s a real problem with a  test which only looks at one borrelia species
  3. We desperately need pathology studies which show pathogen persistence as well as the fact it sequesters in tissues making blood tests nearly worthless
  4. On top of all of these points, advocate Carl Tuttle continues to drill home the point that those diagnosed and treated early that remain with symptoms have a completely different disease process than those who are diagnosed and treated late.  For a great read on this: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  According to microbiologist Holly Ahern, when you add both groups together, there’s a whopping 60% of patients going on to develop chronic/persistent symptoms.

Also, this is another great reason to write your Wisconsin representative and tell them to squash Assembly Bill 313 if you haven’t already done so. More Minnesotans are going to be coming to Wisconsin for treatment. The last thing we need is a panel dictating how our doctors diagnose and treat:  https://madisonarealymesupportgroup.com/2019/11/06/wisconsinites-a-reminder-to-please-write-oppose-assembly-bill-ab313-today/

 

 

 

 

 

 

 

Category:

Activism, Lyme, Treatment

FDA Approves Cobas Babesia Test for Individual Blood Donation Testing

https://www.roche.com/media/releases/med-cor-2019-09-20.htm

Media Release

Basel, 20 September 2019

FDA approves cobas Babesia, Roche’s first whole blood test for donor screening

Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced that it has received approval from the U.S. Food and Drug Administration (FDA) for the cobas Babesia test for use on the cobas 6800/8800 Systems for individual blood donation testing. This is Roche’s first commercially available whole blood test to screen donations and follows May 2019 FDA-updated industry guidance recommending screening and testing for Babesia, to reduce the risk of transmitting the parasite through transfusions.1

cobas Babesia detects parasites that live in red blood cells. This test is an important advancement because the Babesia parasite cannot be detected in traditional plasma or serum samples. The test is able to detect the four common species of Babesia and employs the new whole blood collection tube, which simplifies Babesia sample preparation by consolidating steps within the tube itself to provide an efficient solution for testing laboratories.

In most cases, the Babesia parasite is transmitted to humans through the bite of an infected tick; however, the parasite can also be transmitted through blood transfusions or from mother to foetus during pregnancy. The parasite infects and destroys red blood cells which can lead to anaemia and related life-threatening complications, particularly in the elderly or otherwise immunocompromised patients. In healthy people, the infection can be asymptomatic, or cause a range of mild flu-like symptoms.

“We are dedicated to helping save patients’ lives by providing advanced solutions to enable the protection of the global blood supply from infectious diseases. With the approval of Roche’s first whole blood test used in blood screening we can help healthcare professionals further diminish potential risks of infection from transfused blood products,” said Thomas Schinecker, CEO Roche Diagnostics. “In addition, we hope to help customers improve their lab efficiency by simplifying sample prep while ensuring maximum detection of infectious pathogens in the blood and the safety of the blood supply for the patients we serve.”

The Roche Blood Safety Solutions offering now provides the most comprehensive testing solution for blood donor screening utilising the fully automated cobas 6800/8800 System. This novel test approval follows the successful launch of the cobas Zika test, which was the first Zika test available for donor screening in the U.S. This new Babesia test expands the menu of tests available for the cobas 6800/8800 Systems for use in U.S. donor screening laboratories. This menu includes cobas MPX, cobas WNV and cobas Zika. In addition, the menu includes cobas DPX2, which is used in testing labs that support plasma fractionators.

About the cobas Babesia test for use on the cobas 6800/8800 Systems

The cobas Babesia test for use on the cobas 6800/8800 Systems is a qualitative in vitro nucleic acid screening test for the direct detection of Babesia DNA and RNA in whole blood specimens from individual human blood donors. It detects the four species of Babesia known to cause disease in humans and can be performed with the other routine blood donor screening tests.

The fully automated cobas 6800/8800 Systems offer the fastest time to results with the highest throughput and the longest walk-away time available among automated molecular platforms, providing donor screening laboratories with improved operating efficiency and the flexibility to adapt to changing testing demands. The cobas Babesia test is the latest addition to Roche’s assay menu for donor screening laboratories — which includes cobas MPX, cobas DPX, cobas HEV, cobas WNV, cobas CHIKV/DENV and cobas Zika (US-IVD) — all of which are run on the cobas 6800/8800 Systems. Not all assays are available in all markets.

Since 2014, the cobas 6800 and cobas 8800 Systems have established the new standard for routine molecular testing by delivering fully integrated, automated solutions that serve the areas of donor screening, infectious disease, sexual health, transplant, respiratory and antimicrobial stewardship.

About Roche

Roche is a global pioneer in pharmaceuticals and diagnostics focused on advancing science to improve people’s lives. The combined strengths of pharmaceuticals and diagnostics under one roof have made Roche the leader in personalised healthcare – a strategy that aims to fit the right treatment to each patient in the best way possible.

Roche is the world’s largest biotech company, with truly differentiated medicines in oncology, immunology, infectious diseases, ophthalmology and diseases of the central nervous system. Roche is also the world leader in in vitro diagnostics and tissue-based cancer diagnostics, and a frontrunner in diabetes management.

Founded in 1896, Roche continues to search for better ways to prevent, diagnose and treat diseases and make a sustainable contribution to society. The company also aims to improve patient access to medical innovations by working with all relevant stakeholders. More than thirty medicines developed by Roche are included in the World Health Organization Model Lists of Essential Medicines, among them life-saving antibiotics, antimalarials and cancer medicines. Moreover, for the eleventh consecutive year, Roche has been recognised as one of the most sustainable companies in the Pharmaceuticals Industry by the Dow Jones Sustainability Indices (DJSI).

The Roche Group, headquartered in Basel, Switzerland, is active in over 100 countries and in 2018 employed about 94,000 people worldwide. In 2018, Roche invested CHF 11 billion in R&D and posted sales of CHF 56.8 billion. Genentech, in the United States, is a wholly owned member of the Roche Group. Roche is the majority shareholder in Chugai Pharmaceutical, Japan. For more information, please visit www.roche.com.

All trademarks used or mentioned in this release are protected by law.

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For more:  https://madisonarealymesupportgroup.com/category/babesia-treatment/

https://madisonarealymesupportgroup.com/2019/09/05/babesia-subverts-adaptive-immunity-and-enhances-lyme-disease-severity/

https://madisonarealymesupportgroup.com/2019/08/25/babesia-microti-borrelia-burgdorferi-coinfection/

https://madisonarealymesupportgroup.com/2018/10/11/babesia-found-in-patient-with-persistent-symptoms-following-lyme-treatment/

While a current article downplays Babesia in Canada, another article shows it’s much more of a problem than suspected:  https://madisonarealymesupportgroup.com/2019/08/21/prevalence-of-babesia-in-canadian-blood-donors-june-october-2018/

https://madisonarealymesupportgroup.com/2019/07/11/characteristics-of-transfusion-transmitted-babesia-microti-american-red-cross-2010-2017/  This clearly shows there were more than 200 Babesia transfusion-transmissions reported. It also shows you don’t have to reside in an endemic area or travel to an endemic area to get it. The article also clearly points out that the geographic range of ticks is expanding, which means the pathogens they carry will as well.

Category:

Activism, Babesia, Testing

Minnesota Medical Board Reinstates Sanctions on Controversial Lyme Disease Treatment

http://www.startribune.com/minnesota-medical-board-reinstates-sanctions-on-controversial-lyme-disease-treatment/

Research suggests long-term antibiotics are no better than short term.

By Star Tribune
NOVEMBER 13, 2019

JAMES GATHANY – CDC VIA AP  Minnesota is a Lyme hot spot due to the prevalence of black-legged (or deer) ticks that carry the bacteria that causes it.

Doctors who prescribe long-term antibiotic therapy for tick-borne Lyme disease are now at risk for licensing sanctions in Minnesota, a sign that many leaders in the profession regard the therapy as discredited.

The Minnesota Board of Medical Practice earlier this week lifted its decade long moratorium on such actions because of research suggesting that long-term antibiotic therapy offers no benefits over the short-term therapy that most patients receive when their Lyme cases are diagnosed.

Whether the change will result in a wave of disciplinary actions is unclear, because the board only investigates complaints and some doctors might have dropped this form of treatment, said Ruth Martinez, the board’s executive director.
“It’s kind of hard to know because we’re a complaint-driven process,” she said.

Antibiotic therapy for chronic Lyme symptoms became a medical and political controversy in Minnesota in 2010, after the Infectious Diseases Society of America discouraged the practice. The society cited a lack of evidence that it helps, as well as concern that overuse of antibiotics would give rise to drug-resistant bacteria strains.

Some Lyme experts sought legislation to protect the practice because they worried that the society’s stance would give the medical board justification to penalize doctors who believed the treatment worked. The compromise was the board’s moratorium, which it reviewed and extended in 2014, until research adequately addressed the question.

The board this week decided to lift the moratorium based largely on a Dutch study published in 2016 in the New England Journal of Medicine that showed that long-term antibiotic therapy offered no more relief from chronic Lyme symptoms than placebo pills.

Minnesota is a Lyme hot spot due to the prevalence of black-legged (or deer) ticks that carry the bacteria that causes it. The state reported 950 cases last year, plus another 591 probable cases that weren’t confirmed by lab tests.

Known for the bull’s-eye rash that often appears at the infection site, Lyme disease causes fatigue, joint pain and other symptoms. Most patients recover with standard antibiotics within a few weeks, but some suffer lingering symptoms.

The U.S. Centers for Disease Control and Prevention also discourage long-term antibiotic therapy for treatment of these chronic symptoms, noting research that it can cause complications, including an increased risk of future infectious diseases.

While no one spoke in opposition to the board’s decision at its latest meeting, the decision upset some Lyme advocates.

Dr. Elizabeth Maloney of Wyoming, Minn., has created online training for physicians regarding Lyme disease and serves on the treatment subcommittee of the federal Tick-Borne Disease Working Group. She pointed to a separate study showing that long-term antibiotics at least offered benefits to a subgroup of Lyme patients with persistent fatigue.

Doctors with experience in treating Lyme should still be able to use this treatment option when others aren’t working, she said, but she worries that they will now be afraid to do so.

“It becomes an access-to-care issue,” she said, “for these very sick patients.”

Jeremy Olson is a Pulitzer Prize-winning reporter covering health care for the Star Tribune. Trained in investigative and computer-assisted reporting, Olson has covered politics, social services, and family issues.

_________________

**Comment**

And this is where we still are – 40 years later….unbelievable.

This is also why we need to completely squash Assembly Bill 313 as more Minnesotans will be coming to Wisconsin for treatment and now they want to monkey with our doctors as well by telling them how to diagnose and treat Lyme/MSIDS. 

Make sure if you haven’t written to the representatives behind AB313, you do so.  For sample letters see:  https://madisonarealymesupportgroup.com/2019/11/06/wisconsinites-a-reminder-to-please-write-oppose-assembly-bill-ab313-today/

My husband and I were in and out of treatment for over 10 years, primarily using antibiotics. I can attribute that treatment directly with our health. I can’t imagine where we would be without it. I’m thankful our Wisconsin doctors had the freedom, despite the very real risk, to treat us as they felt necessary.

If they are so worried about antibiotic resistance why aren’t they fighting agriculture which uses them prolifically in livestock? Why isn’t there outrage over those using copious amounts of antibiotics for acne which is hardly a medical condition of life and death?  No, it’s just the really sick Lyme/MSIDS patients who are singled out for using a treatment that can save their lives.

Things haven’t changed in Lyme-land.
Recently, Dr. Cameron asks a very important question about the potential of antibiotic stewardship on delaying treatment for Lyme/MSIDS patients:  https://danielcameronmd.com/consequences-antibiotic-stewardship-lyme-disease/
Excerpt:

“In elderly patients with a diagnosis of UTI in primary care, no antibiotics and deferred antibiotics were associated with a significant increase in bloodstream infection and all-cause mortality compared with immediate antibiotics,” writes Gharbi.

While this study examines the effect of antibiotic stewardship on elderly patients with a UTI, it also raises the question as to the impact of such stewardship programs on treatment delays for patients with Lyme disease.

Category:

Activism, Lyme, Treatment

Netflix Star Talia Jackson on Battling Lyme Disease While Chasing Her Hollywood Dreams: ‘This is a Very Lonely Disease’

https://parade.com/933958/leenatailor/talia-jackson-lyme-disease/  Full Article Here

Netflix Star Talia Jackson on Battling Lyme Disease While Chasing Her Hollywood Dreams: ‘This Is a Very Lonely Disease’ 

It’s hard enough being a young woman in showbiz, let alone dealing with a debilitating illness that causes pain, fatigue and spontaneously passing out on set—the toll of which can surface in crippling anxiety and depression.

But for Netflix’s Family Reunion star, Talia Jackson, spending her teenage years learning to live with Lyme disease came with a nasty twist: Her mom, Kelly, accompanied her to the doctor and recognized the same symptoms Talia was describing in herself, leading to her also being diagnosed with the bacterial illness….(See full article in link)

Category:

Activism, Lyme