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Lyme Advocates Rally in DC Over Government Mishandling of Lyme Disease – May 17, 2019

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24550940?

Lyme Advocates Rally in DC Over Government Mishandling of Lyme Disease

MAY 14, 2019 — 

FOR IMMEDIATE RELEASE

Contact: Mirenda Campirano
Phone: 956-778-1130
Email: thelymearmy@gmail.com

WASHINGTON, D.C. (May 13, 2019) — Lyme Disease patients with their families and friends from across the United States and Canada are converging on Capitol Hill in to convince elected officials to hold a formal investigation into the government’s mishandling of tick-borne diseases.

The group is gathering outside the Hart Senate Office Building on Friday, May 17, 2019. Three independent Lyme disease groups are banding together to lead the call.

Representatives of The Lyme Army centered in Texas, The Lyme Center of Martha’s Vineyard in Massachusetts and The Lyme Disease Foundation from Connecticut have scheduled appointments with elected officials to demand a comprehensive congressional investigation into the mishandling of this insidious disease by Health and Human Services and their divisions of the Centers for Disease Control (CDC), as well as the National Institutes of Health.

​The day will culminate at Union Square with a candlelight vigil at 6 p.m. to commemorate those who have lost their lives to this horrific disease. A list of names of those who have died of and with tick-borne diseases will be read. A march to Health and Human Services (HHS) will follow.

​Award-winning film producer, director, and cinematographer Andy Abrahams Wilson and another documentary crew will be there to film the day’s events.

Lyme and tick-borne diseases are not recognized by the CDC or the mainstream medical community because most Lyme patients do not meet the CDC’s current case definition, despite clinical symptoms and serologic evidence.

“Fraudulent testing criteria and an inordinately narrow case definition both promulgated by the CDC and Infectious Disease Society of America (IDSA), have led to the denial of this debilitating, incurable disease; thus, patients are left with little to no access to health care, inaccurate test results, no valid treatments, no insurance coverage, no disability insurance, and little funding for proper research,” said Mirenda Campirano, a registered nurse and advocate for those who suffer from Lyme. “We are passing these infectious diseases to our children. I know, because I gave it, along with several other tick-borne infections, to my son in utero.”

With the CDC now reporting 390,000 cases of Lyme annually, the implications of this statistic are devastating.  In addition to the revised testing standards that are too narrowly defined, many Lyme strains do not test positive on the traditional ELISA or Western blot tests. This leaves millions of people infected with Lyme disease excluded.

Lyme and tick-borne diseases are not recognized as a legitimate disease and there is insufficient funding for proper research – research to elaborate more accurate criteria for laboratory testing as well as research to determine how best to treat this devastating illness.

The decision to delegitimize Lyme and tick-borne diseases have left patients’ lives in ruins as they lose their ability to work, their homes and their savings, become isolated from their family and friends, and ignored or by the mainstream medical community. Moreover, although the CDC is a United States based organization, its reach is global. Many countries that lack the resources the United States enjoys in the field of disease control look to the US for guidance. The CDC, HHS and IDSA are supposed to be the United States’ health protection agencies. They are supposed to save lives and protect people from health threats. Part of the CDC’s mission is to provide consultation and assistance to other nations to help assist in approving their disease prevention and control. Sadly, in the case of Lyme and tick-borne diseases, these agencies are withholding the truth of Lyme disease and failing citizens of the United States as well as the world at large.

ABOUT THE GROUPS:

The Lyme Army, led by Mirenda Campirano, RN BSN, is a grass roots activist group made up of individuals from across the globe fighting for truth and justice so that Lyme Disease patients can get the help they rightfully deserve. Her son contracted Lyme in utero, while she was infected. Campirano is actively working with Texas legislators to help provide pass legislation that will provide patients and doctors with more accurate Lyme testing and insurance coverage. She is also the founder of the Lyme Disease/Tick Borne Illness Group of the Rio Grande Valley, TX.

The Lyme Disease Foundation, Inc. is the first Lyme disease nonprofit in the world. It was co-founded in 1988, by a healthcare lawyer Karen Vanderhoof-Forschner, JD, LLM, BS, MBA, CPCU, CLU and a team of Lyme researchers and business people, to find the scientific truth about Lyme disease, in the hopes of saving her dying son’s life. Her son Jamie was born in 1985 and at birth had contracted Lyme in utero. He was multihandicapped from the disease. He died in 1991 during a relapse when his brain crushed itself. On autopsy the doctors found the Lyme bacterium in his optic nerve. More IV therapy was not better treatment because he died while infected. Jamie was unique because he had damage to the back of his eyes that proved he had damage from a congenital spirochetal infection.

Dr. Enid Haller is the Executive Director of The Lyme Center of Martha’s Vineyard, a free walk-in information service for Lyme and tick-borne diseases. Both Vanderhoof-Forschner and Haller are former member of the Tick-Borne Disease Working Group Subcommittee for Access to Care Services and Support to Patients. These three organizations called on their members and supporters to be present in the nation’s capital on May 17, 2019 to their members and supporters to be present in the nation’s capital on May 17, 2019 to walk the halls of Congress to demand a congressional investigation of the mishandling of Lyme and tick-borne diseases.

Visit The Lyme Army Facebook page, the Lyme Disease Foundation Facebook page, or The Lyme Center at Martha’s Vineyard.

______________________

**Comment**

While I won’t be there, I’m with you in Spirit!

Category:

Activism, Lyme, Uncategorized

One Family’s Story of Strep, Lyme Disease, and PANS/PANDAS

https://www.lymedisease.org/kravitz-pandas-lyme/

One family’s story of strep, Lyme disease, and PANS/PANDAS

PANDAS Lyme disease

By Jenny Kravitz

On January 3, 2019, my family’s whole world changed LITERALLY OVER NIGHT.

Our once loving little man (now age 6) was filled with rage, aggression and hatred. He went from snuggling with me and loving me, to lashing out at me, telling me he hated me, wanted to kill me and physically coming after me.

Let’s back track. As a baby and toddler, Nathan got strep throat constantly over and over again. He had his first positive strep test at six months old. From then on, it felt like a battle with strep every month.

At 3, Nathan got his tonsils and adenoids removed, in hopes this would cure his recurring strep infections. He had to go back under the knife two days after surgery for hemorrhaging.

Nathan made a full recovery after spending a few days in the PICU and he returned home. Little did we know that strep would come back with a vengeance!

I personally never knew until now that strep could come back with no tonsils and even hide in other places. It was living in his GI system and causing severe inflammation in his brain, liver and spleen, causing Nathan now to be critically anemic.

The “flu”?

Fast forward to January of 2019. Nathan came down with the “flu.” He was lethargic, sleeping 24/7. No matter what we did, he persistently had high fevers of 103-104 for days on end.

Finally after two weeks, the fever broke and slowly started coming around. He was still quiet, still tired but happy to be around friends.

Then, came rage and saying awful things. Then he became sad, overly sensitive, and would cry for hours. Then came the bowel regression. I’m not telling this for pity or embarrassment, but to make others aware, because this is what this nasty illness does. This is OUR REALITY. Nathan was fully potty trained at the age of 3. He has now regressed and is most of the time in pull ups, having three or four accidents a day.

He has “flares” that can be caused by just about anything. I’ve seen it happen when he’s overtired, has a loose tooth (open wounds allow bacteria to move freely), and when he comes into contact with illness. Nathan doesn’t have to have a current strep infection to cause a flare up. If he simply is around someone who has strep, this can cause a huge reaction.

I called an emergency IEP meeting with Nathan’s teachers, to figure out what the hell was going on! THIS WAS NO WAY ADHD OR PEDIATRIC BIPOLAR like the neurologist wanted to label my child. We put a good plan in place and I mentioned my concerns and thoughts.

Finally, some answers

Late January, I called a naturopathic doctor in New Hampshire who is highly knowledgeable and came recommended by many. This was after a friend reached out to me and told me Lyme disease could cause this behavior and then told me about a illness called PANDAS (pediatric autoimmune neurological disorder associated with streptococcus).

My head went spinning, I researched and researched, stayed up late researching, googling, joining support groups. OH MY HEAVENS. This is it! This was my son. I only remember ever seeing two ticks on Nathan. But honestly, I didn’t know much about tick-borne illness, so I removed the ticks and shrugged it off.

We went to see this naturopathic doctor. Fast forward again, to when his lab work came back. Nathan’s strep antibodies were four times what they should be! His CRP (which measures inflammation in the body) was also four times what it should be. BAM 💥PANDAS! This mama knew it!

Then we got the Lyme lab work. He tested positive for Lyme AND mycoplasma AND Bartonella. BAM AGAIN! WE FINALLY HAD A DIAGNOSIS! We also found out he has celiac, so we are now a gluten-free family.

A face to the nastiness

Don’t get me wrong. I was sad, I cried. But this mama was and still am so relieved to put a face to this nastiness that was causing Nathan to act so out of character.

He now is in treatment. On two antibiotics and natural tinctures to support his immune system (which by the way is literally nothing) and to help with the inflammation that’s going on in his body/brain.

Nathan still struggles with facial and vocal tics, potty regression, slurred slow speech, mood swings and major GI issues. But slow and steady and ONE DAY AT A TIME!

Love you my sweet, brave boy. Mama always has your back!

Jenny Kravitz lives in New Hampshire. She shared this on her Facebook page and gave us permission to republish it.

___________________

**Comment**

Children with PANS/PANDAS often have an infection(s) triggering their illness.  Treating this infection(s) is imperative. According to a Wisconsin specialist, 80% of his PANS/PANDAS patients have Lyme and other coinfections. This is important to know and tell others about, remembering that tick borne illness testing is abysmal.

Getting to a specialist who understands this complexity is paramount.

For more:  https://madisonarealymesupportgroup.com/2019/04/09/abstract-bartonella-in-boy-with-pans/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/04/11/hidden-invaders-infections-can-trigger-immune-attacks-on-kids-brains-provoking-devastating-psychiatric-disorders/

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2019/01/02/pans-pandas-a-survivors-story/

Please spread the word and educate others. Children are losing their childhoods to this.

 

Category:

Activism, Bartonella, Inflammation, Lyme, PANS, Psychological Aspects, Uncategorized

Image

Happy Mother’s Day!

iu-30

Written

on May 12, 2019

Current Lyme Disease Research Shows These 6 New Developments

https://www.bustle.com/p/current-lyme-disease-research-shows-these-6-new-developments-17140501

Current Lyme Disease Research Shows These 6 New Developments

By

Vitalii Matokha/Shutterstock

Lyme disease is carried by ticks, and is a pretty well-known problem — around 300,000 cases are likely diagnosed in the US every year, according to the Center for Disease Control and Prevention — but there’s still a lot we don’t know about it. Lyme disease is more complex than it looks, and the first few months of 2019 have brought some studies that are changing our understanding of tick-borne diseases and Lyme.

People with Lyme disease contract it from the bite of a tick infected with a particular bacterium, often after traveling through tick-friendly areas like forests and prairies, and it can cause issues like joint pain, flu-like symptoms and a distinctive bulls-eye rash (though you can have Lyme even if you don’t see a rash). It’s treated with antibiotics. However, between 10 and 20% of people who are bitten suffer from symptoms long after the disease has been treated, and scientists aren’t entirely sure why.

“Some scientists believe the bacterium can persist in the body, but others dismiss the idea. This dispute, combined with patients whom doctors often can’t help, has created a fractious field unlike almost any other,” noted Science in a review of Lyme disease research funding in 2019.

New science is helping to solve this conundrum, and cast more light on Lyme in general. Here’s where Lyme research stands right now.

1. We Know More About Post-Lyme Disorder — And How We Might Cure It

Center for Disease Control & Prevention/Wikimedia Commons

One of the biggest mysteries of Lyme disease is what’s called post-treatment Lyme disease syndrome (PTLDS). Why does treatment work on some people and not others? What makes PTLDS patients particularly vulnerable, and how can you treat it?

2019 has brought a few answers. Research by Johns Hopkins Medicine has revealed that people with PTLDS have a particular kind of brain inflammation, and that it’s probably the source of their high inflammation levels in general — and the cause of a host of symptoms. This is a new discovery; before this study, nobody knew what was causing people with PTLDS to have elevated inflammation.

There’s hope for treatment of PTLDS too; a three-antibiotic ‘cocktail’, also formulated by scientists at Johns Hopkins, has shown some serious promise for treating slow-growing Lyme bacteria. These ‘persister’ bacteria, according to their theory, might be missed in the first treatment of Lyme disease and cause symptoms to last for months and years — but the cocktail, when it was given to infected mice, cleared up the problem totally. It needs to be given human trials, but it’s a promising lead.

2. Lyme Disease Is Expected To Increase Due To Climate Change

Lyme disease research is accelerating, and that’s good news — because experts in 2019 warned that as climates warm worldwide, it’ll become more common. The European Congress of Clinical Microbiology & Infectious Diseases noted that mosquito- and tick-borne illnesses worldwide, from Lyme to malaria, will probably infect more people worldwide. Dr Giovanni Rezza, Director of the Department of Infectious Diseases at the Istituto Superiore di Sanitá in Rome, said in a press release:

“The stark reality is that longer hot seasons will enlarge the seasonal window for the potential spread of vector-borne diseases and favor larger outbreaks.”

3. We Now Know The Grass Length In Your Garden Doesn’t Matter

Center for Disease Control & Prevention/Wikimedia Commons

Concerned that your backyard is a breeding-ground for dangerous ticks bearing Lyme bites — because you don’t mow it often enough? Research published in PLOS One in 2019 found that it might not actually matter. “We tested the hypothesis thatlawn mowing frequency influences tick occurrence,” the scientists explain in the study. They studied tick levels in 16 yards with varying mowing frequency in a region known for ticks, and found that there were no ticks at all. None. Zero.

“Promoting frequent mowing (i.e., shorter lawns) and the removal of grass clippings could have minimal impacts on tick microhabitats, but is consequential for beneficial wildlife and other ecosystem services associated with urban biodiversity,” they explain. Many species of endangered bee, for instance, like longer grass, so a bit of length is actually preferable.

4. Machine Learning Is Helping Us Diagnose Lyme Disease

Research published in Nature in 2019 reveals that machine learning — the principle behind artificial intelligence — can help understand Lyme disease, given that its symptoms in individuals can be radically different. The study tracked the medical records of Lyme disease patients at Mount Sinai hospital in New York, and found that using machine learning, it could predict comorbidities — illnesses that showed up at the same time – and what conditions and disorders might show up in certain people and not others as they recovered (or, in the case of PTLDS patients, didn’t). The aim, the study said, was to create a framework that could help individual treatment plans for Lyme disease patients, rather than going for a one-size-fits-all approach.

5. We Know More About How The Bacteria Itself Survives

National Institute of Allergy and Infectious Diseases/Wikimedia Commons

The bacterium behind Lyme disease is called Borrelia burgdorferi, and it’s what’s transmitted into your system by an infected tick when it bites you. Research in 2019 by Connecticut scientists has found that Lyme disease bacteria have a very particular shape and structure that makes them dependent on peptides to function. They obtain these peptides from animal hosts like mammals, including, yes, humans. Without them, a Lyme disease bacterium doesn’t survive; with them, it thrives. Figuring out how to disable that mechanism might mean that one day, in the future, we can stop Lyme bacteria in their tracks.

6. ‘Persister’ Bacteria Might Be Killed By Plant-Based Treatments

In the future, we may be treating Lyme disease with treatments derived from garlic, cinnamon and cumin. That’s the interesting conclusion from a groundbreaking study from Johns Hopkins, one of the most important Lyme disease research centers worldwide. In late 2018 they published results showing that, in petri dishes in their labs, essential oils derived from 11 different natural sources — garlic, pimento, cumin, palm rose, cinnamon bark, myrrh, hedychium ginger flowers, torchwood, thyme, mountain pepper, and lemon eucalyptus — that were hugely effective against Lyme disease bacteria. More effective, in fact, than standard antibiotics.

“We found that these essential oils were even better at killing the ‘persister’ forms of Lyme bacteria than standard Lyme antibiotics,” lead study author Ying Zhang said in a press release. This doesn’t mean that Lyme disease patients should give up their antibiotics for inhaling or swallowing natural oils; for one thing, that’s likely dangerous, and for another, exposure in a petri dish is very different to life in the human body. It will take a long time before we know whether this can be replicated in medication form; right now, antibiotics are still the best way forward.

The mysteries surrounding Lyme disease and its persistent form are still complex, but there’s hope that new treatments will be developed — and that we’ll finally get ahead of this disease as it becomes more common worldwide.

____________________

**Comment**

The science isn’t settled on ALL the ways Lyme can be transmitted, despite what authorities say:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

While the rash means you HAVE Lyme, not having the rash means nothing.  Anywhere from 27-80% get the rash depending upon who’s counting:  https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/  See comment after article.

This 10-20% with continuing symptoms is a falsely skewed number.  A microbiologist explains in this article that it’s actually around 60%:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

Key quote:

10-20% of Lyme disease patients who are promptly diagnosed and treated with an antibiotic within the first few weeks of infection, still end up with chronic disease. This is PTLDS.

30-40% of Lyme disease patients who have been infected for weeks to months before getting diagnosed, and THEN treated with an antibiotic, still end up with a chronic disease. This subgroup has no specific label but it has been referred to as “chronic Lyme disease,” or CLD.

Combining these two subgroups implies that up to 60% of people with Lyme disease will experience chronic illness as a result of this tick-borne disease.

Climate change has been disproven regarding tick and pathogen proliferation:  https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

Studying the mowing patterns of 16 laws in ONE area of the country does not mean the science is settled.  Mow your lawn. It just makes logical sense when you understand ticks love humidity. I seriously wish they’d take this type of research funding and apply it to testing, treatments, and transmission studies for practical information patients & doctors.

We don’t need the help of machines as much as we need doctors to pull their heads out of the sand.

Regarding ‘we know more about the bacterium’ – not until you deal with the pleomorphism (shape shifting) ability of Bb, as well as the fact many are polymicrobially (numerous pathogens) infected.  These issues change the entire scope of this illness.  For more background on this: https://madisonarealymesupportgroup.com/2019/04/29/is-the-sky-truly-going-to-fall-for-patients-with-the-untreatable-form-of-lyme-disease/

Many desperate patients out here in Lyme-land have tried a number of plant-based treatments on our own. While I’ve personally taken internal essential oils (plant based concentrates of herbs), they did NOT tackle this beast.  I relapsed on them. They may work for a select subset of patients and they very well may be a great choice once a person has reached remission, but don’t bank on them for front-line treatment.

Just being real.

 

Category:

Uncategorized

FREE Unlocking Lyme Book – Dr. Rawls – One Week Only

In honor of Lyme Disease Awareness Month this May, Dr. Bill Rawls and the RawlsMD team are launching the #LiveLearnLyme campaign. The goal of this campaign is to share helpful information about Lyme, and to offer our support to everyone impacted by the disease.

As part of the campaign, we’re giving away FREE copies of Dr. Rawls’ best-selling book Unlocking Lyme. The only cost to you will be shipping and handling ($3.95 in the U.S.).
Your Cost: $16.95 FREE
Coupon Code:  FREEBOOK 
This book has already helped thousands of people find relief from chronic Lyme disease, an illness that has much of the medical community baffled. We hope that by sharing this book with anyone who needs it, we can help improve even more lives.

Here’s how to receive your free book, in 3 simple steps:

  1. Go to UnlockingLyme.com
  2. Add Unlocking Lyme to your cart.
  3. Enter the coupon code  FREEBOOK  and click Apply.

 

 

 

Category:

Uncategorized