Betty Gordon: Iowa Lyme Disease Activist

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Each day of May for Lyme Awareness Month in 2015, whatislyme.com would like to recognize someone in the Lyme community that has done something to try to help the Lyme community. There are several “unsung heroes” in our community and we would  like to just offer them a little recognition and make sure that their achievements and efforts don’t go  unnoticed.

Today we would like to honor Iowa Activist Betty Gordon

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Most of you know Betty already I’m sure. She has been a Lyme disease activist for the  last 11 years, helping on sites such as Lymenet and MD Junction, sending out mass emails and giving lots of Lyme patient support to those who need it.

Here’s a little list of some of the things we have seen Betty Gordon doing to help others over the years:

  • Sends out ILADS LLMD names/info galore for 8-9 years now on 2 different Lyme boards.
  • Writing replies to newspaper/magazine articles for 11 years.
  • Writing to CONGRESS to Iowa senators/house reps for 11 years as well as Iowa’s legislatures for my area as well as other state federal house reps/senators.  
  • Calls to Congress: A few years back, she called 4 phone nos. in congress daily for 2 months lobbying them about our lyme disease bills that we were trying to get placed on the schedule to be discussed. On the 1 line where she could leave personal messages; she talked about something differently off the top of her head.
  • Alex Hermstad: She read a long letter from the Mother of the late Alex Hermstad, Storm Lake, Iowa, who had been paralyzed for 2 years and on a respirator.   Alex’s Dad took his wife to court to have the respirator shut off and won.   She died on valentine’s day that year at age of 17 after being sick 5+ years from a co-infection and ALS!
  • Under our Skin Showings: She has shown UNDER OUR SKIN and EMERGENCE in the Ames, Iowa public library.
  • Had a public library display with a mannequin dressed HOW we should be dressed working outdoors, and handouts galore plus the USA’s CDC statistics of reported Lyme cases per state; people studied the STATE statistics carefully.
  • Lyme Awareness Rallies: She’s been at all 3 of Iowa’s Lyme public awareness in May at Des Moines, Iowa capitol grounds giving handouts and educating the public walking by us.
  • She addressed the Mary Greeley Medical Center’s hospital board and benefactors during their annual supper with the program talking about their SUCCESSES that year on EDUCATION.
  • She got up and spoke 10  minutes without a written speech identifying they had FAILED  diagnosing and treatment of Lyme disease bites and chronic Lyme/co-infection patients.   They were NOT educated dealing with diagnosing and treating Lyme disease and all co-infections.  She asked them WHY would they not help out this huge community of folks we have located in central Iowa?
  • She offered to PAY for bringing in 1 of our ILADS Lyme literate mds to TRAIN their MDs/public about Lyme disease/co-infections.   This is what happened, “YES, THEY WOULD ACCEPT … bringing in THEIR choice of an IDSA dr. at MY expense!   I promptly told them I was canceling my offer to pay for their dr. and I further informed them I would NO longer be a future benefactor for education in their hospital foundation fund. A  man in his 90’s with a very weak voice said,  “Boy, that took a lot of guts to get up and say that!”  Betty said, “I couldn’t hear him, but someone told me what he said.”You’ve not seen anything yet!”
  • I don’t have a bashful bone in my body;  I was brought up to speak up for myself on anything WRONG in our society; change the things I can change, and learn to know the difference when it’s a LOST cause.”
  • She fought 5 years to be approved for SSDI, social security disability insurance, work benefits.   She says about this experience, “My lawyer of 4 yrs. QUIT me; he returned both files to me.   I read everything in it taking 7 months to extract info from medical reports that would fit into APPROVED LIST FOR ADULTS, SSDI. I typed it up and sent to the HEAD admin law judge who was going to hear my 2nd case.  
  • I had never received a letter from SSDI about being denied or setting up my 2nd ALJ hearing; nor from my lawyer.   So I called SSDI to talk to case worker about my case then followed it up sending emails to the HQ for our area and to the VIRGINIA HQ.  
  • I was very upset and let them know about it then received 2 letters from Des Moines and Kansas City head people about this; then I received 2 letters.
  • The ALJ chewed out my lawyer for not letting me know these specific details; he was very ticked off, and that’s when he quit me.   I represented myself at 2nd ALJ video hearing;  he stated it would be long time before he responded.   In 2-3 weeks,  I was notified it was APPROVED finally 😉  yippee!!”
  •  She has participated in every LYME survey or petition that has come along and sending it far and wide to others.
  • Betty feels strongly about our lyme/co-infection community, that she and her late husband, Jack, had put in their wills that one of our LYME DISEASE ORGS will inherit money for EDUCATION AND RESEARCH upon Betty’s death. However, if she ends up going to a nursing home for years, it may have to be used on her own care.
  • For the last 27 years, Betty has been a caregiver for at least 1 or more immediate family members while dealing with her undiagnosed and finally correct diagnose of lyme disease.
  • Last March, her step-daughter’s husband committed SUICIDE in Tulsa, Oklahoma. She flew down there to drive her home in daughter’s car with what she could fit in there. She was to come and live with her Dad and Betty.
  • However, 1 week before Betty flew there, Jack got sick going to hospital where his kidneys shut DOWN. She thought she would lose Jack 3 days before flying to Tulsa. She thought she’d have to arrange a funeral at the same time of these 2 events.
  • Daughter ended up living with Betty for 9.5 months; Jack never returned home. Betty took care of her daughter who has issues for a long time.
  • This is the 1st time currently she is NO longer caregiving for anyone but herself 😉 So this is the BEST she has felt in DECADES!
  • She has  a Lyme list group that I forward promptly updated info she gets within our large Lyme/co-infection community plus those I get directly from: CDC, NIH, IOM, medpage, and the list goes on of resources.
  • She has over 85,000 posts online in 11 yrs. helping to SAVE their lives giving out the names of ILADS, INTL. LYME AND ASSOCIATED DISEASE SOCIETY, Lyme literate drs., LLMD,. names who treat us LONGER than 1 month of antibiotics, supplements, and/or alternative therapies, and reputable info/sites of our ILADS treatment guidelines.
  • Betty  suggests you email ILADS HQ executive director, BARBARA, at LYMEDOCS@AOL.COM telling her what city/state, age of child UNDER 21, and what type of lyme/co-infection specialist you need. Barbara has the MOST CURRENT info out there; no one else does!
  • Get jack’s case published
  • Get his death certificate amended showing BORRELIA & LEWY BODY dementia, chronic kidney failure all contributed to his death 11.13.14;
  • Get jack added to iowa’s cdc lyme statistics!!

Betty feels strongly about helping our chronic Lyme/co-infection community,  so she and her late husand have provided in our wills that a lyme disease org will inherit a set percentage of my estate PROVIDING I don’t end up in a nursing home for years using that money for my care/needs.  It’s for research and educational purposes.

Betty did all of this while caregiving for her husband at home for 2 years and while his last 8.5 months were spent in a long term care facility.    
Betty says of her husband,
 
He was 100% supportive of my illness and activism;  however, he would have loved to have thrown my pc out the window for the HOURS I was spending daily on it years ago!   He changed his mind when I read him many of the thank you notes/letters I received online from folks 😉
Lyme disease isn’t a lost cause;  we can change things by working together as ONE coordinated group vs. all the separate group entities!~Betty G, IOWA
Betty G in lower right corner at Iowa Awareness Rally.
Betty G in lower right corner at Iowa Awareness Rally.
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Betty at the Iowa Lyme Awareness Rally in Des Moines.

Find out more info on Iowa Lyme Here

You can find Betty G at:

As Bettyg: http://www.mdjunction.com/forums/lyme-disease-support-forums

From Betty: “I’ll help you too at my convenience since my days/nights are just the opposite of NORMAL folks; this has been for almost 2 decades!! uffda/oh my goodness ;)”

 If you need 1 of our ILADS LLMDS,   please post in our LLMD REQUEST SECTION showing in subject line: CITY/STATE where needed; if under age 21; show that info too; thanks!  My llmd info is by WORD OF MOUTH on updates/corrections/editions, etc. So it is as current as the person who gave it to me. ILADS HQ is MOST CURRENT THERE IS!

Chronically ill and often disabled volunteer PATIENT advocates (often with sick family members too) have a goal to try to educate and support PATIENTS.  This little job is more overwhelming than you can possibly imagine. We deal with questions about chemicals for lawns, species and life cycles of various ticks, deer populations, hundreds of Lyme symptoms, various treatment methods, special diets, and the latest news and science on all of the existing and emerging co-infections.We raise money for research, spend our days and nights reading scientific studies till we fall asleep at the computer. We learn about labs and the various tests, decipher patient’s results for them; organize, present and attend programs and meetings. We are contacting state and federal legislators concerning Lyme-related issues. We are working with out-of-state and national Lyme organizations and support groups to assist with their various projects and programs, including their legislative and educational efforts;  regularly assisting patients with insurance issues,  filing claims, appeals and various reports; and  helping patients gain access to qualified health care professionals.We are assisting families in gaining access to needed medications; working one-on-one with patients and their families on issues of concern.  Lyme disease isn’t a lost cause;  we can change thingsby working together as ONE coordinated group vs. all the separate group entities! ~Betty G, IOWA LYME ACTIVIST 46 yrs. chronic Lyme patient  35 yrs. MISDIAGNOSED by 40-50 drs.; UNACCEPTABLE! 

Well said Betty! We all love you and appreciate all you have done and all you will continue to do for the Lyme community. Hats off to ya!

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 Here are some comment people sent us about Betty G and how she has helped them: 

Chris Hoskins: I met Betty at the May day event at the capitol building in Des Moines last year. Betty filled my head with info that I know has had a huge part in my recovery. Thank you Betty for helping me through one of the scariest times in my life.”

Ann R Flanegan: Betty is one of the most knowledgable people thatI know of in the Lyme world. Thank you for your dedication.

Bambi Albert: “Seems I’ve known Betty for as long as I’ve known you Lisa….always a valued, full of info Lymie.”

Jeannine Comtois Bennett: “Lymenet used to be my go to spot and I always looked for Betty’s responses. She helped me immensely. I still buy Noir sunglasses because of her advice.”

Tina Radzavich: “Betty was a great source of information to get me on my way in a quest of recovery years ago. She is such a kind spirit and sweet soul. She is always the first to chime in with an answer and sweet sentiment.”

Brooke Boden: Betty was my first contact when I was searching for a diagnoses.”

Grace Pitschi: Betty was my first contact in the Lyme world as well. Such a kind and dedicated woman.”

Kory James: Betty I’ve never met you but from one Lymie to another I want to thank you for all you do for the lyme community, it’s such an unselfish thing you do when your sharing to the ones that are just starting this lyme journey. God bless you your fellow Lymie from Minnesota. Let’s continue to roll girl!!!! Woot woot!!!!!!!!!!!”

Jill V. Easton: “I spent my first several years of Lyme reading on Lymenet for hours a day to get information and exchange information. Betty’s advice was always detailed, extremely knowledgeable and compassionate. I have seen her expertise show up on other forums, she is a true educator and advocate who has helped so many of us.”

Helen Fasy: “Long ago I got the best information from Betty!! Thank-you Betty!!!!!”

Christine Heffer: “ Betty was among the first people who helped me understand this disease and why I was not getting well.”

Gail Sheffer: “Like Jill, I too met Betty on Lymenet looking for & exchanging information. Betty could can always be counted on to catch the newbies, and recommending a set list of links to begin reading & learning. She is the best!! Thank you Betty G!!”

Lisa Hilton: Betty, when I came onto the Lyme scene back in 2005, you were one of the first ones to help me back on Lymenet. So thank you. Back then I saw you as a role model, someone who helps support people and helps promote change in what seems like an endless battle. You were a light at the end of the tunnel and inspired me to try to follow in your shoes. Since then we have become friends, and I have watched you go through your own health issues, family struggles and losing your husband. You are STILL out there helping everyone else.. what an inspiration! Love you Betty G!

Jeannine Comtois Bennett:  “Hey Betty. This is Hurtin’ Gramma and I would like to thank you for the many ways in which you have helped me in the beginning following my diagnosis of Lyme Disease way back in 2005. Your dedication is commendable.”

cooltext119253501416919If you leave a comment below, and you know Betty from MD Junction or Lymenet please use add your knickname so she knows who you are!





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