Guest Post from Betty G, My experience at Mayday and other Activism

Guest post from Betty Gordon, Iowa Activist

May 19-23, I went to Washington, DC for 1st time for LYME activism. I had 2 major falls in 1st 2 hrs. there!! Not a great way to start a vacation/activism.

Several folks who had gone for years had explained a few things to me to prepare me for this huge city for this “country bumpkin” raised on a small Iowa farm.

During this time, I met around 100-125 during the 3 days of events in various locations of events.

I knew NO ONE when I went there although I had been emailing for years some folks like: Monte Skall and Susan Green, plus a few new online folks like: Allison Caruana, the mayday organizer, and Nancy/Yancy from lymenet’s board, who I was able to meet the 4 of them 1 on 1.

My 1st day was so full by flying from Des Moines, Iowa at 6 am to Reagon airport in Arlington, VA; registering at the motel, and just dropping things off.

Then headed to the rally at the capitol area where I took many photos of those there and got their names. My apologies to those whose photos did not show up.

Then spent 3 hrs. at the wonderful science/policy meeting with 7-9 speakers organized by Bruce Fries and Lyme Action Network, who served us some wonderful, tasty food and beverages.

Then that evening was the Lyme memorial for about 2 hrs.

All 3 times, I was meeting different people from all over the USA. Many were so sick, but came for limited time periods.

It was very heartwarming to have been there for these events although the attendance was far below what it’s been for years. I’ve wanted to go for years.

Then to wrap-it all up, I met with Iowa’s 2 Senator’s staff members from Joni Ernst and Chuck Grassley for 30 minutes with Bruce Fries attending also.

I have attached Bruce’s summary of our meeting with them.

I can’t wait to go again next year and meet more folks!

Each of us CAN make a difference in our own LYME/CO-INFECTIONS war against the IDSA lyme treatment guidelines.

I have included some recent Lyme activism news I’ve been involved in.

Hope you enjoy it; it was meant for YOU all also.

Betty Gordon, aka Bettyg, Iowa 😉

I GOT A SYMPATHY LETTER FROM PRES. BARACK OBAMA TODAY!
what a surprise! Large envelope with cardboard came & this letter enclosed:

The White House
Washington

May 17, 2016

Mrs. Betty Gordon

Dear Betty:

I appreciated your message and was saddened to learn of the loss of your husband, Jack. Few things can heal the ache a loved one leaves behind, but I hope you find some comfort in knowing your efforts may help spare others the pain you have had to bear.

In your resolve, we see the fortitude of the American spirit.

Stories like yours motivate my Administration as we continue to support medical research and strive to improve the lives of all those touched by illness.

I trust you take pride in the work you are doing, and I wish you all the best.

Sincerely,

Barack Obama
————————-

Surprised it also didn’t have anything about PRESIDENT shown…..

I don’t know for sure how this all came about, but I feel it’s concerning Jack’s recent brain autopsy world-breaking news of the 3 major things they have found to date. I’ll never know for sure since I write to congress…our federal senators, house rep, and our president often.

I arrived safely home 130 am, May 25, from my 6 days in Washington, DC, exhausted and catching up with sleep.

Here are some pictures I sent to Wisc. Lisa Hilton lyme photos soon of our 5.19 at the capitol area; typed up list of names to go with them. Many photos didn’t come out for unknown reasons in spite of my being new to this iphone6 learning to operate it.

I handed out flyers to all attendees at the events of Dr. Alan MacDonald’s latest discoveries of his brain autopsies. They were all so appreciative and all knew WHO Alan was and what he has accomplished for our lyme/co-infection community!!  
 
I was honored to do this as Alan discovered my what contributed to my husband’s death:  Borrelia/lyme disease and Lewy body dementia.  Now I knew what Jack had vs. what he did NOT have in being misdiagnosed!

 

Praying for you all a safe memorial weekend remembering all we have lost especially those war casualties. Until I was at the huge Vietnam memorial seeing those endless 50-53,000+ names did I realize how many lives were lost during my growing up years.

with all my love, hugs, and gratitude having EACH of you in my lives throughout the years,

Bettyg, Iowa activist

I was going to attach the photo taken of me standing at the SENATE’s podium in huge hearing room that Bruce Fries took as we delivered letters to each of the republicans on all 4 floors, but I don’t know how to find it & attach it!!

It was a STANDING ROOM only crowd….well, some day it might be.
*******************************

Your message has been sent to the following recipients:

* President Barack Obama
*********************
* Vice President Joe Biden
* Senator Chuck Grassley
* Senator Joni Ernst
* Representative Steve King

The content of your message is as follows:

[The message(s) you sent had each recipient’s salutation here]:

Between my late husband, Jack Gordon, and me, we’ve had 82 years of Borrelia/chronic lyme disease!

Each of us were misdiagnosed 35 years EACH; not diagnosed or treated during these years.

I was misdiagnosed by at least 40-50 drs. during my 35 years.

Jack’s BRAIN AUTOPSY finalized 11.22.2015 made WORLDWIDE history showing 2 diseases never found before:

Borrelia/lyme disease and Lewy body dementia causing violent hallucinations were he’d wake up screaming/yelling that someone was trying to kill him. He was NOT in any war.

He was never diagnosed or treated for either of 2 diseases!

Because he’s the 1st case worldwide, we have written him up to be PUBLISHED in 1 of the scientific medical journal in future.

I, a NON-MEDICAL wife, will be 1st CO-AUTHOR over the 3 medical folks.

Jack was diagnosed with advanced Parkinson’s disease and dementia was showing up.

You have no idea the peace of mind I now have knowing what my late husband HAD vs. what he didn’t have.

I’ve been trying to get his death certificate from 11.13.2014 AMENDED adding the 2 diseases contributed to his death plus chronic kidney failure.

Also trying to get him added to IOWA’S CDC LYME statistics.

Iowa govt. has been fighting me on both of these 2 situations; WHY?

I’ve also been trying to get McFarland Clinic, our local Mayo Clinic, Iowa to have ground rounds on lyme disease training by SKYPE on these subjects:

* basics of lyme;
* lyme and MS;
* lyme in the brain

I hand-carried my 2 page letter plus 2 pages explaining what this skype training would be about.

McFarland Clinic REFUSES to even reply to me since they have failed miserably my late husband, me, and many hundreds of folks in central Iowa.

Please co-sponsor S 1503; we need to get the ball rolling in congress on this finally.

Please don’t let my husband’s death and brain autopsy results be in vain.

LET THIS LEAD TO PASSAGE OF LYME BILL; thank you all.

Sincerely,

Mrs. Betty Gordon
******************

Danielle and Karen,
Thank you both for meeting with Bruce and me 2 days ago. I got home 1:30 am today.

I told you of my 2 personal requests for help:

You stated you would contact CDC about trying to get Jack added to Iowa’s LYME CDC statistics.

You stated I would have to work with the State of Iowa’s county/state coroner to try to get Jack’s death certificate amended to adding that these 2 diseases found in his brain autopsy contributed to his death:
Borrelia/lyme disease & Lewy body dementia…1st in world with these 2 diseases found together.

6.1.16–talked to county coroner today; he needs an actual BRAIN autopsy results from DR. ALAN MACDONALD to be considered in AMENDING Jack’s death certificate! What I gave him from poster board was NOT good enough for him!

As I stated, Jack’s brain autopsy has made 3 major world-breaking news with the last one being the filarial nematode parasite worm found with lyme disease inside the worm.

Bruce has summarized wonderfully the things that he discussed with you both where I chimed in as needed and the many handouts he left each of you.

We appreciate the time and nice accommodations you gave us both.
Hope to visit you both again next year during Lyme disease awareness activities in DC 😉

I bolded certain things in Bruce’s letter so they are not overlooked as it is the way that we lyme/co-infection community feel about these things.

Sincerely,
Betty Gordon, widow of Jack Gordon
47.5 yrs. chronic lyme disease
35 yrs. misdiagnosed for both Jack & me

On Wednesday, May 25, 2016 1:55 PM, Bruce Fries <brucefries@gmail.com> wrote:

Thanks for meeting with constituent Betty Gordon and I, Monday, May 23, to discuss our concerns about the epidemic of Lyme disease and associated tick-borne illnesses.
As I mentioned, Lyme disease is simply the tip of the iceberg, and the larger issue is the rapid expansion of tick-borne diseases and the challenges posed by “stealth” infections like Lyme disease that are difficult to diagnose and treat.

Below are requests of Senators Ernst and Grassley and a list of our concerns about CDC’s response to this epidemic, which has grown to more than 329,000 new cases a year and costs our economy more than $3.7 billion annually.

Requests
1. Ask Senators Ernst and Grassley to sign on to a letter of inquiry to HHS and CDC expressing concerns about the government’s response to the epidemic of Lyme disease.

Note: Several staffers recommended that this be a bipartisan, group letter and that we provide a draft.

2. Refer our concerns and reference documents about the need for independent oversight of CDC to the appropriate committees.

Note: I believe Senator Ernst serves on the Committee on Homeland Security and Governmental Affairs, which has primary responsibility for oversight of Executive Branch agencies.

3. Ask Senators Ernst and Grassley to co-sponsor S. 1503 – Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015
Follow-up (on our part)

1. Create draft letter of inquiry.
2. Provide digital copies of reference documents.

Concerns

1. Federal Funding and Research Priorities

Lyme disease affects more than 329,000 people annually and, according to statistics provided by CDC, the annual burden to the U.S. economy is more than 3.7 billion, yet Lyme disease received only $25 million in funding for FY2016.

We want Congress to provide funding commensurate with the magnitude of this rapidly growing epidemic and ensure that a preponderance of grant awards will be based on tangible benefits to patients, such as research for more accurate diagnostics and more effective treatments.

Effective treatment is what we want, whether in the form of different antibiotic combinations, adjustments to the dosing schedule, or something else. Yet little or no CDC/NIH funding has been provided to researchers to pursue these alternatives.

It is simply unacceptable that the treatment endorsed by CDC fails up to 36 percent of the time.

2. Preferential Treatment of a Private Organization

CDC provides preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting IDSA’s 2006 guidelines for diagnosis and treatment of Lyme disease, while withholding information from the public about the more current and more comprehensive 2014 Lyme guidelines from the International Lyme and Associated Diseases Society (ILADS).

Unlike the ILADS guidelines, the IDSA guidelines do not comply with the Institute of Medicine (IOM) Standards for Developing Trustworthy Clinical Practice Guidelines or with the GRADE system for rating the quality of the evidence.

The IDSA guidelines also have expired and been delisted from the National Guidelines Clearinghouse.

Despite serious flaws and noncompliance of the expired IDSA guidelines, CDC continues to promote them on its website, in printed publications, and in seminars to educate healthcare professionals and the public.

CDC’s official position, published on its website and in correspondence from top officials, continues to be “CDC believes that IDSA guidelines currently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease.”

How can the 2006 IDSA guidelines, which are ten years out of date and non-compliant with current Federal standards represent the best available synthesis of the medical literature?

What’s especially troubling is that the CDC officials who provide the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a glaring and long-standing conflict of interest.

3. CDC Refusal to Acknowledge Peer-Reviewed Science

The CDC concept of Lyme disease fails to take into account more than 700 peer-reviewed studies on the microbiology and immunology of the Lyme bacterial infection. Lyme disease is not a planktonic infection like strep. It is an immune evasive, persistent infection like tuberculosis, capable of reactivating.

CDC explanations of Lyme disease dismiss these peer-reviewed findings.

The existence of chronic Lyme is accepted by microbiologists, pathologists, and independent doctors who treat patients with persistent symptoms.

The existence of chronic Lyme is mainly disputed by CDC and academic researchers who have extensive conflicts of interests tied to CDC’s narrow definition of Lyme disease and the IDSA guidelines.

4. CDC Performance and Policy Failures

CDC has failed to protect the public from this devastating epidemic. Unreliable tests, treatment regimens that fail up to 36 percent of the time, inadequate programs for prevention, and CDC’s endorsement of outdated, noncompliant guidelines have created a perfect storm of unmet medical need and patient suffering.

Lyme disease meets all the requirements of a pandemic. Why is the CDC so silent about it? Why do they downplay it?

Contrary to what they say, Lyme disease is difficult to diagnose and hard to get rid of, in large part due to misinformation, inaccurate tests, lack of trained doctors and lack of research.

We Need Your Help
The Lyme community desperately needs your help. We make up millions of people worldwide that live with the debilitating, persistent form of Lyme disease (i.e. PTLDS / chronic Lyme).

Thanks again for meeting with us. We are proud to see that concerned citizens have this type of access to Congress, and we are impressed with the professionalism and compassion exhibited by the staffers we met with.

Please contact me if you have any questions and let me know if there is anything else I can do.
Sincerely,

Bruce Fries, President
Patient Centered Care Advocacy Group
202-617-1592 BruceFries@Gmail.com

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