Archive for the ‘Activism’ Category

TBD Working Group’s Subcommittee Reports are Now Available

https://www.lymedisease.org/tbd-working-groups-subcommittee-reports/

TBD Working Group’s subcommittee reports are now available

The federal Tick-Borne Disease Working Group meets May 10. The main order of business will be to accept reports from six subcommittees that have been gathering information on behalf of the Working Group.

The reports are intended to offer insights into gaps, opportunities and potentials actions to be considered by the Working Group for the report to Congress and HHS Secretary.

Some of the reports have been posted on the Health and Human Services website. Here are the links:

Report of the Access to Care Services and Support to Patients Subcommittee:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/access-to-care-2018-5-9/index.html

Report of the Disease Vectors, Surveillance, and Prevention Subcommittee:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/disease-vectors-2018-5-9/index.html

Report of the Other Tick-Borne Diseases and Co-Infections Subcommittee:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/other-tbds-2018-5-9/index.html

Report of the Pathogenesis, Transmission and Treatment Subcommittee:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/pathogenesis-prevention-2018-5-9/index.html

Report of the Testing and Diagnostics Subcommittee:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/testing-and-diagnostics-2018-5-9/index.html

Report of the Vaccine and Therapeutics Subcommittee:

https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/vaccines-and-therapeutics-2018-5-9/index.html

Members of the public can watch the proceedings online, but you’re required to register in order to participate.

Click here for more information:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/vaccines-and-therapeutics-2018-5-9/index.html

 

LYME SCI: We Need Better Testing and We Need it Now

https://www.lymedisease.org/lyme-sci-tbd-working-group/

LYME SCI: We need better testing and we need it now

My recent request to deliver verbal comments to the federal Tick-Borne Disease Working Group on May 10 was granted. Here’s what I said:

Good afternoon. First, I’d like to thank you all for the work the TBDWG is doing and for giving me the opportunity to comment.

My name is Lonnie Marcum. I am a Physical Therapist by training, turned Lyme advocate after my daughter was diagnosed with Lyme and co-infections in 2013—this after going nearly a year with an undiagnosed infection.

About three weeks into her illness she had all the signs of Lyme disease, yet the standard test her pediatrician ran was negative. Had she received doxycycline at that point our lives would have been completely changed.

Ten months later, after seeing every pediatric specialist known to man, we were referred to the Pain Management Clinic at a large teaching institution. We were sent home with a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) vs. Somatoform Disorder—she was 15!

Returning home, knowing something was still terribly wrong with my daughter, I went outside of my insurance and was lucky enough to find a compassionate physician willing to test her for several infections listed as potential causes of Chronic Fatigue.

Lo-and-behold, her tests came back “CDC positive” for Ehrlichia Chaffeensis!

I tell this story not because it’s unique—in fact missed-diagnosis of tick-borne diseases is the norm here in California—I tell this story because the medical system we were directed to was more willing to condemn my child to a life of anti-seizure, anti-depressant and pain medication, than to give her a curative prescription of Doxycycline.

Since my daughter’s diagnosis, I have discovered that Lyme disease does exist in California. In fact, we’ve known this since the first case was detected in 1978.

And the truth is, Lyme is just the tip of the iceberg in California! We have multiple strains of Lyme-like Borrelia and relapsing fever Borrelia that are not detected by standard tests, and dozens of other tick-borne pathogens known to cause illness in humans—including the deadly Rocky Mountain spotted fever.

In my opinion, the CDC has done a disservice to the public by downplaying the far-reaching effects of other tick-borne diseases outside of the northeastern U.S. It appears to me, the farther one lives from Lyme, Connecticut, the less relevant the CDC statistics become. Florida, Texas, Utah, California…all these states have unique climates and their own set of tick-borne pathogens. We need to be testing for all of these.

We need to stop giving the public the impression Lyme disease is the only thing to fear from a tick bite. Ticks are a cesspool of germs. Entomologists know that the best way to assess the risk of tick-borne infections is to look inside the tick—it’s all there.

While the CDC may need highly specific tests to track the spread of individual pathogens, the last thing the public needs is another test designed to detect one species of Borrelia.

Today we have the technology to design highly sensitive tests capable of detecting multiple pathogens in one test. Had this been available to my daughter six years ago, she could have avoided years of intractable pain and suffering.

With more sensitive, accurate and inclusive tests, not only will the controversy of Lyme and tick-borne diseases be resolved, but lives will be saved. I urge you to make this happen now!

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .

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**Comment**

Testing is a great place to start for sure.  To that I say, “AMEN!”

There still is much to uncover, however, and until this is done, we will continue down the blickety, black vortex of doom.

In my estimation much is still regurgitated from outdated and myopic science.  We need to essentially start over at square one with open minds. People need to seriously check their egos at the door and admit this has been one huge screw up that has gone on for over 40 years.  

TIME FOR CHANGE.

We need:

  1. Accurate testing that picks up ALL pathogens
  2. Appropriate treatment that deals with ALL of the pathogens
  3. Science to show whether or not all of this is a STD
  4. Science to show whether or now all of this can be spread congenitally
  5. Science to show ALL the ways these pathogens can be transmitted
  6. Insurance coverage
  7. Trained doctors/practitioners/researchers who acknowledge we are typically infected with a plethora of pathogens
  8. Trained doctors/practitioners who understand the scope of this plague
  9. Doctors/practitioners to quit denying its existence and blaming/shaming patients
  10. Acknowledgement that this modern-day plague is EVERYWHERE.  Throw the maps away!
  11. And more I’m probably forgetting……

 

 

Adding Joy & Pleasure to Life, No Matter When

https://globallymealliance.org/adding-joy-and-pleasure-to-life-no-matter-when/

Adding Joy and Pleasure to Life, No Matter When

by Jennifer Crystal

I celebrated my 40th birthday by doing a cartwheel on a beach.

A few weeks earlier, a childhood friend and I had been bemoaning our upcoming birthdays. We agreed that we would feel better about the looming big number if we’d achieved everything we’d hoped to by this age. Back when we were 10, 15, 20, our 40th birthdays felt very far away, and we were both sure we’d be married and settled by then. Though we have each made strides in our careers and our lives, 40 doesn’t look the way we expected it to—nor does it look the same as it does for many of our contemporaries—and my friend lamented that instead of a celebration, the birthday felt like a marker of an unfortunate reality.

That’s when I decided we needed a perspective shift.

Actually, the shift was one I adopted halfway through my 39th year: to add joy and pleasure to my life in the meanwhile.

It began when another friend, newly single, announced that she was going to start dating just for fun. She ultimately wanted another long term relationship, with the right person. But she had things to work through from her old relationship, and wasn’t necessarily in a place to jump right in to something serious. That didn’t mean, though, that she couldn’t jump in to anything. She was just going to enjoy whoever came along, for whatever they brought to her life, just for the sake of that enjoyment.

Wait a minute, I thought. Why can’t I do the same thing?

For years when I was bedridden with tick-borne illnesses, my entire life had been on hold. Not just in terms of dating, but in terms of working, exercising, socializing, or doing anything else that didn’t involve taking medication or going to a doctor’s office. I was waiting. Waiting to feel well enough to walk up a flight of stairs. Waiting to get my PICC line out so I could wash my own hair. Waiting for my hands to not ache so I could type one paragraph.

During that period of recovery, I had a recurring dream. I was back at the summer camp where I got my original tick bite. It was the last day of summer, and I realized that all the boats had been put away and I’d never had a chance to waterski. My therapist analyzed this dream as a fear of missing the summer of my life. By losing my prime years to illness, I worried I would miss that prime entirely. The therapist reminded me that I was simply on a different track than my peers, and that my prime would come later, when I was healthier.

She also helped me to see that I was missing fun. From that point on, I tried to add enjoyment to to my life, even though I couldn’t do most of the things I had once considered fun: waterskiing, skiing, going out with friends. But I worked with friends to bring the fun to me. When I was well enough to go out to lunch, a friend and I went to an outdoor place by a harbor, so I could enjoy the feeling of being by the water. Another friend took me for a drive and had me describe to him what it was like to drive the ski boat I once had at camp. He took me to a ski movie, so I could at least participate in that life in some way.

I didn’t enjoy those moments as much as I could have, because I was still waiting. Waiting to be able to do those activities for real.

As I got better, I was able to actually ski, to try new water activities like paddle-boarding, to learn to bike in an adaptive way. I hosted parties and board game nights and went out with dear friends, not to the extent I once had, but certainly in a manner that added a lot of fun to a life that had previously been constricted by illness.

But it wasn’t until my friend made her “dating just for fun” announcement that I realized that despite these additions to my life, I was still in a waiting state. I’d still been denying myself certain pleasures, because I have to be so careful about my limitations. And also because I was waiting to do things like go on vacation, until I felt fully secure in my career and met someone to travel to a romantic destination with. I was waiting to meet that right person, who would fully understand my limitations and would be willing to build a life together in light of them.

I still do strive for those things. But I’ve lost enough years of my life. Why should I deny myself joy and pleasure while I wait? Lyme disease or not, there are no guarantees; none of us know if we’re going to be here tomorrow. So, like my newly single friend, I decided that I, too, was allowed to just enjoy life starting that very day.

I, too, started dating just for fun. What a relief of pressure, to date someone just because I enjoyed their company, even if I knew he wasn’t The One. To my friend who was lamenting our upcoming birthdays, I suggested a beach vacation that worked within my limitations (two hours away, and on a strict  budget). What a pleasure it was to just enjoy our time on the beach together! To celebrate the fact that we’ve made it to 40, and survived all that we have, and are here to enjoy it now.

On our second day on vacation, I noticed that a number of kids were doing cartwheels in the sand. “I bet I can still do that,” I announced, and without thinking, I just stood up and did one. Not perfectly—I didn’t stick the landing—but even as I fell over in the sand, I was laughing hysterically.

“Why would you do a cartwheel?!” my mother asked when I sent her the video later. Undoubtedly she was worried that acrobatics would take too much energy for me and set off a flare of my Lyme disease, or that I’d re-injure the knee I’d had repaired years before.

To be honest, I didn’t think about either of those concerns before I did the cartwheel. I just did it, because I knew I could. And, as I told my mother, “because all the other kids on the beach were doing it.”

I may be 40. I may still have Lyme and other tick-borne illnesses. I may still be waiting for certain pieces of my life to fall in to place. But  I’m not going to wait to have fun.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

 

 

Some States Only Provide LD Estimates – Houston, We Have a Problem

http://www.wmur.com/article/despite-prevalence-of-lyme-disease-nh-provides-only-estimate-of-cases/20107070

Despite prevalence of Lyme disease, NH provides only estimate of cases

Officials say thousands of cases reported, but official statistics show smaller count

Thousands of cases of Lyme disease are reported each year in New Hampshire, but the last complete set of data recorded in the state was five years ago.

Lyme disease is one of 60 diseases that are required by law to be reported to the Department of Health and Human Services. State officials said close to 3,000 cases are reported each year, but the current number is an estimate because an exact count hasn’t been made since 2013.

“Since 2014, we’ve had some challenges keeping up with the volume of reports we’ve been receiving,” said Beth Daly, chief of the Bureau of Infectious Disease Control.

Daly said all the funding for Lyme surveillance in the state comes from the Centers for Disease Control and Prevention. The federal agency provides a $77,000 grant.

“We’ve dedicated those funds to two part-time positions to help us collect this information from health care providers,” Daly said.

The bureau started estimating Lyme disease cases in 2014 because of staffing shortages and budget limitations, Daly said. There is no state funding provided to track cases of the disease.

“We rank 39th in the country relative to state support for the work of public health,” said Lisa Morris, director of the Division of Public Health Services.

State officials admitted that the statistics posted about New Hampshire on the CDC website are way off. The site lists 691 confirmed cases of the disease in 2016, but state officials told News 9 that they receive 2,700 reports of the disease each year, a statistic that Daly said has remained stable over the past five years.

Lyme disease reporting is mandated, but surveillance methods among the top 14 states vary considerably, officials said.

“It’s only reflecting the number of cases that we have had the capacity to investigate,” Daly said. “They will not print our estimated number.”

Naturopath Julia Greenspan, who says she specializes in Lyme disease at Greenhouse Naturopathic Medicine, said she is alarmed that state officials have been estimating the data.

“If we had a better understanding of the infection around the state or in New England, I think people would take it a lot more seriously,” she said.

New Hampshire isn’t alone. Vermont receives no state funding, but officials said they still investigate every report of Lyme disease, as does Maine. Massachusetts provides estimates, like New Hampshire.

For 18 years, David Hunter has facilitated Lyme support groups. He calls it a labor of love after his daughter’s high school career was waylaid by the disease. He said he’s also critical of the practice of estimating cases.

“If you take statistics down a peg, it just means awareness is down a peg,” he said.

But state officials argued that instead of handwringing over counting every case, resources might be better shifted to prevention and education.

As of February, the Bureau of Infectious Disease Control has hired two people to fill the vacancies for Lyme surveillance. Daly said she’s hopeful that in 2018, New Hampshire will once again have complete data instead of estimates.

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**Comment**

This right here, ladies and gentlemen, is part and parcel of the problem regarding Lyme/MSIDS.

I whole-heartedly concur with both the ND and the advocate in this article.  If states can’t show reasonably accurate numbers, and those numbers appear low, no one is going to take this epidemic seriously.  Numbers equate out to time and money.  Without accurate numbers, corresponding monies will NOT be allocated to this modern-day plague.
If your state only estimates cases, you need to write your state representatives today.  Time to change how all of this is being handled, and only We the People are going to do it.
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Lyme & Other TBI’s – 3rd Rocky Mountain Forum – May 19, 2018

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