Arizona Online Support Group

ArizonaLyme
is an online discussion group at Yahoo Health Groups
 click below (will open a new page/tab)

This is a reference and support group for Lyme (and associated diseases) patients, their care givers, medical professionals, and anyone else interested in knowing more about this disease and how to cope with it. We are a service of the Arizona Lyme Disease Association AZLDA.

 

 
Larry and Marie presenting Dr.Cowden with an appreciation plaque for his talks on autism
and Lyme Disease treatment protocols at
the Tucson support groups meeting Jan. 2009.
 
To see more photos of this
and other events

MEETING INFORMATION:

 

Please refrain from wearing fragrances to the meeting,
in respect to our chemically sensitive members.

SPECIAL Meeting Notice


 

Phoniex

Phoenix area support group meeting 
 Location:
Phoenix area information - Michelle Louis - 

Pyle Adult Recreation Center | 655 E. Southern Ave. |
Tempe, AZ 85282
*Southwest corner of Rural & Southern
 
first Saturday of every month
 

O

Tucson Chapter

                                                           Monthly support meeting:

 

The first hour is dedicated to an educational topic,
the second hour is for group and emotional support.

Location: River Center Branch Library. Library is located at 5605 E. River Rd
Located at the northeast corner of River and Craycroft, on the
ground floor section on the northeast corner of the shopping strip.
Tucson area information-    Email:

Wellness First located at 3861 N. First Ave., Tucson, AZ

Wood Memorial Library 3455 N 1st Ave, Tucson, AZ


2019/2020 Schedule
 
PLEASE NOTE:
Meeting locations may vary:
 
WOODS MEMORIAL LIBRARY
3455 N 1st Ave, Tucson, AZ 85719.
 
Dusenberry River Branch Library
5605 E. River Road
Tucson, AZ
(meetings at Dusenberry Library are 2-4 pm)
or
Wellness First
3861 N. First Ave.
Tucson, AZ
(meetings at Wellness First are 3-5 pm)
 
LOCATING OUR MONTHLY MEETINGS IS EASY
Please check the meeting reminders to find the location and time of the meeting you plan to attend.
Our meetings generally take place at one of locations:

WOODS MEMORIAL LIBRARY, 3455 N 1st Ave, Tucson, AZ 85719.
2-4pm We will meet in the small conference room
 
Dusenberry River Branch Library, 5605 East River Road, (Northeast Corner of River and Craycroft, on Ground Floor Section of Whole Foods Strip Mall.)
Meetings at Dusenberry River Branch Library are scheduled from 2pm til 4pm unless otherwise noted.
 
Wellness First, 3861 N. First Avenue
(the address is the only signage on the building...look for LARGE NUMBERS on WEST SIDE of road) Location is one block south of Roger Road on the west side of First Avenue. There is a large patio wall with address visible from the street. Also, there is a red mailbox right next to the driveway.
 

  • 2019
  • UPCOMING SUPPORT GROUP MEETING

    ---------------------------
     

    Saturday, February 8, 2020 

    Location: Woods Library, in the large meeting room (first room on right)

    2-3pm EMF Sensitivity and ways to decrease everyday exposure

    3-4 pm Support and Sharing

     

    Saturday, March 14

    Location: Woods Library, in the large meeting room (first room on right)

    2-3 pm  TBA 

    3-4 pm   Support and Sharing

     

    Saturday, April 11th

    Location: TBA

    2-3 pm  Dr. Irene Kitzman is local Psychiatrist will talk on " TBD's and NeuroCognitive Disorders"

    3-4 pm Support and Sharing

     

    Lyme Disease Association of Southern Arizona (LDASA) 

    Our organization:  In the past several months, we held our first board meeting, elected officers, adopted Articles of Incorporation and By-laws and completed registration with the Arizona Corporation Commission.   

     

    LOCATING OUR MONTHLY MEETINGS IS EASY! 

    We meet the second Saturday of the month. Please check the meeting reminders (emailed to you and on our website) to find the location and time of the meeting you plan to attend. Our meetings generally take place from 2-4 pm at the Woods Memorial Library on 3455 N 1st Ave, Tucson (in the small conference room), or the Dusenberry River Branch Library, 5605 East River Road (Corner of River Rd. and Craycroft), on the ground floor section of the Whole Food Strip Mall. For questions and information email Paula: Paulaazlyme@gmail.com or call Jane at 520-529-0221.

     

     

    Remember prescription pill bottles are too small to be recycled in your blue bin, but take them over to our friends at Pima Animal Care Center and they will reuse them! They can use old towels too. You can also take prescription bottles to Primavera Foundation and they will reuse them to put items (shampoo, lotion, sunscreen. etc) in for the homeless.


     

    Download your free Lyme Planner   When you have Lyme, it’s hard to plan for anything. Monthly and weekly planners make it a little easier.


     

    Organizations and Recommended Websites:
     
    The first three websites have links to help find medical providers:
    Sister organization to ILADS with mission of training physicians and supporting research
    Co-founded by Tucsonian Mary Ackerley, MD, ISEAI is a nonprofit professional medical society 
    For mold and indoor air quality testing

     
    Lyme Disease Information:
    The History of Lyme Disease42 minute video with Joseph Burrascano, MD 

     
    Diagnostics/Testing: 

     
    Tick Testing:  
    Bay Area Lyme Foundation (Currently Free Tick Testing)In Partnership with Northern Arizona University.  Nationwide Free Tick Testing is back—and it includes testing for Bartonella!  Free testing available June-October 2019
    Note: These are examples of tick testing labs.  There are usually charges for these services. LDA does not make recommendations about whether people should have ticks tested, reliability of tick testing, or whether people should wait for the results before seeking/getting treatment. Those are decisions that need to be made after reviewing material on the topic and discussing the benefits/risks with a professional.  

     
    Children and Lyme Disease:
    Practical guidance on how to prevent, screen, treat, and educate children about Lyme Disease

     
    Prevalence:
    Check out the numbers of Lyme Disease cases in the US 
    Go to this website and hover over and click on various parts of any state. You can see the incidence of Lyme in dogs for each county. The actual incidence is a least 30 times that of what's diagnosed and reported on the map, since they are testing a limited number of dogs. If you sign up, you will receive a similar email monthly. It's helpful data to show to providers who may insist that we don't have Lyme in Arizona. 

     
    Lyme Disease as Epidemic/Pandemic: 
    Time to Designate Lyme Disease a PandemicArticle by Daniel Cameron, MD.  

     
    Prevention:  
    Chemical Free Clothing for Tick Bite Prevention. It is ultra light and worn underneath regular clothing. It prevents ticks, mosquitoes, chiggers, black flies, ants, no-see-ums, and other biting insects from entering through clothing to reach the skin to feed/bite. 

     
    Education, Training, CME:  
    Please encourage all your physicians to take these free courses. Physicians need to take a certain number of CME courses each year to keep their licenses.  
    The 20th Annual Scientific Conference will be held on Thursday, October 31 - Sunday, November 3, 2019, at the Westin Copley Place in Boston, MA

     
    Treatment:
    Biofilms and stationary phase persister forms of Bb are resistant to commonly used antibiotics and can explain in part persistent symptoms. Recent papers outline the important of persister drug regimens.  200 patients with Chronic Lyme/PTLDS where dapsone combination therapy was shown to be effective for major Lyme symptoms.  
    34%of patients are high treatment responders (from mylymedata.org) meaning that they reported that after taking antibiotics their symptoms improved moderately to a very great deal. 
    Clinic in Lords Valley, PA that accepts major insurances that provides diagnostic testing and verification of tick borne diseases for adults.    Also, patients who have already been diagnosed and are seeking advice or management of current symptoms are also eligible for care at the center.  

     

    Co-infections:
    Bartonella, a bacteria most commonly associated with cat scratch disease which until recently was thought to be a short-lived or self-limiting infection. What is new is the association of Bartonella with a wide variety of ailments, many of them chronic and some of them life-threatening.  
     
    Books:
    New book by Bryan Rosner; Published in March 2019  
    by Connie Strasheim who battled severe insomnia for years. She shares insights and possible answers to this condition in her book, which is now out in paperback format 
    By Kris Newby, May, 2019
While on vacation on Martha’s Vineyard, Kris Newby was bitten by an unseen tick. That one bite changed her life forever, pulling her into the abyss of a devastating illness that took ten doctors to diagnose and years to recover.
    By Neil Nathan, MD, a resource book for patients and practitioners. Dr. Nathan has zeroed in on the reality of Toxicity and Chronic Disease, while providing cutting edge insights into the most effective therapies. 
    By Richard Horowitz, MD, February 2017 This guidebook helps individuals identify their symptoms, and figure out where to go next. It is a follow-up to “Why Can't I Get Better?”
    By Rafal Tokarz, PhD., an associate research scientist at the Center for Infection and Immunity at Columbia. Explains the debate over "chronic Lyme disease."

    Lyme: The First Epidemic of Climate Change By Mary Beth Pfeiffer April, 2018
    A Program to Combat Chronic Inflammation and Identify Food Sensitivities” by Gail and Laura Piazza (2016)

    Renowned expert Marty Ross, MD provides step-by-step practical guides for you. Based on nearly 20 years of experience treating thousands of Lyme disease patients. Includes the full Ross Lyme Support Protocol.  Book download is free if joining his email list.  

     

    Research:
    Leading Research-ILADS  Published research articles authored by ILADS members
    ILADS provides free  access to back issues of the Journal of Spirochetal and Tick-Borne Diseases dating from 1994-2002.

     

    MyLymeData is one of the largest patient-driven registries in the nation, with nearly 12,000 patients enrolled. It was created by patients, is run by patients and will address the issues that Lyme disease patients care about. If you are enrolled in MyLymeData, we thank you for providing the data that will accelerate the pace of research in Lyme disease. If you are not enrolled, please do so today. 
    Tick Borne Working Group/ Health and Human Services
     
    Please let Frances Lunney know if you have problems with any of the links.

    Recycling Tip: Prescription bottles from City of Tucson

    Remember prescription pill bottles are too small to be recycled in your blue bin, but take them over to our friends at Pima Animal Care Center and they will reuse them! They can use old towels too. You can also take prescription bottles to Primavera Foundation and they will reuse them to put items (shampoo, lotion, sunscreen. etc) in for the homeless.

     

    Jane Beecher's cookbook entitled, The Strong Women’s Cookbook available on Amazon. The book includes autobiographical stories of women who have struggled and are struggling with Lyme Disease and Fibromyalgia.

    Please consider pasting, "The Strong Women's Cookbook" to your Facebook Page, so that others may know about it.
    All profits will go towards the education of Lyme and Fibromyalgia doctors and patients
    The book is available on Amazon.com
    You can reach Jane at 520-529-0221 with any questions you may have.

    ----------------------------------------------------------------

    AZLDA
    PO Box 35637
    Tucson AZ 85740

    ***********************************************************************
     UPCOMING EVENTS

  • We hope to see you there!


     

    The list of links sent with the monthly emails has been redone/reorganized and is being sent in a separate email. Please let Frances Lunney know if you have problems with any of the links.

     

    Organizations and Recommended Websites:

    The first three websites have links to help find medical providers:

    Lyme Disease Association, Inc.

    ILADS

    Lyme Disease.Org

    The International Lyme and Associated Diseases Education Foundation

    Sister organization to ILADS with mission of training physicians and supporting research

    Arizona Lyme Disease Association

    Global Lyme Alliance

    The International Society for Environmentally Acquired Illness

    Co-founded by Tucsonian Mary Ackerley, MD, ISEAI is a nonprofit professional medical society 

    Environmental Analytics

    For mold and indoor air quality testing

     

    Lyme Disease Information:

    How to Handle a Tick Bite

    Lyme 101 from ILADS

    The History of Lyme Disease42 minute video with Joseph Burrascano, MD 

    Symptom List from ILADS

    Paving the Way for Better Lyme Diagnostic Tests

    Borrellia Spirochetes Are Masters at Evading the Immune System

    Chronic Lyme Do's and Dont's

     

    Diagnostics/Testing: 

    Lyme Disease Testing- Lyme Disease.org

    Lyme Disease Testing Global Lyme Alliance

    Choosing a Lyme Disease Test- Daniel Cameron, MD

    To Test or Not to Test

    Better Lyme Diagnostic Tests

     

    Tick Testing:  

    IGENEX

    Clongen Laboratories

    Test Ticks by NJ Labs

    Bay Area Lyme Foundation (Currently Free Tick Testing)In Partnership with Northern Arizona University.  Nationwide Free Tick Testing is back—and it includes testing for Bartonella!  Free testing available June-October 2019

    Note: These are examples of tick testing labs.  There are usually charges for these services. LDA does not make recommendations about whether people should have ticks tested, reliability of tick testing, or whether people should wait for the results before seeking/getting treatment. Those are decisions that need to be made after reviewing material on the topic and discussing the benefits/risks with a professional. 

    Children and Lyme Disease:

    Facebook Group: When Your Child Has Lyme

    Lyme: Kids and Schools

    Practical guidance on how to prevent, screen, treat, and educate children about Lyme Disease

    Lyme Aid for Kids

    Prevalence:

    Lyme Disease Association statistics

    Check out the numbers of Lyme Disease cases in the US 

    CAPC:  Incidence of Lyme Disease in Dogs

    Go to this website and hover over and click on various parts of any state. You can see the incidence of Lyme in dogs for each county. The actual incidence is a least 30 times that of what's diagnosed and reported on the map, since they are testing a limited number of dogs. If you sign up, you will receive a similar email monthly. It's helpful data to show to providers who may insist that we don't have Lyme in Arizona. 

     

    Lyme Disease as Epidemic/Pandemic: 

    Time to Designate Lyme Disease a PandemicArticle by Daniel Cameron, MD.  

    Prevention:  

    Preventing Tick bites

    Rynoskin clothing

    Chemical Free Clothing for Tick Bite Prevention. It is ultra light and worn underneath regular clothing. It prevents ticks, mosquitoes, chiggers, black flies, ants, no-see-ums, and other biting insects from entering through clothing to reach the skin to feed/bite. 

    Education, Training, CME:  

    Lyme Disease Basics for Providers

    Lyme CME Free evidence based Continuing Education for Physicians

    Please encourage all your physicians to take these free courses. Physicians need to take a certain number of CME courses each year to keep their licenses.  

    LDA Annual Scientific Conference

    The 20th Annual Scientific Conference will be held on Thursday, October 31 - Sunday, November 3, 2019, at the Westin Copley Place in Boston, MA

    ILADS upcoming and Past Conferences

    Treatment:

    Controversies and Challenges in Treating Lyme/TBD -ILADS

    Recent research on the importance of persister drug regimens

    Biofilms and stationary phase persister forms of Bb are resistant to commonly used antibiotics and can explain in part persistent symptoms. Recent papers outline the important of persister drug regimens.  200 patients with Chronic Lyme/PTLDS where dapsone combination therapy was shown to be effective for major Lyme symptoms.  

    To Treat Lyme Disease Focus on the Co-infections

    Super responders are key to  personalized Lyme treatment

    34%of patients are high treatment responders (from mylymedata.org) meaning that they reported that after taking antibiotics their symptoms improved moderately to a very great deal. 

    Wellness Center at Pike Family Health Center

    Clinic in Lords Valley, PA that accepts major insurances that provides diagnostic testing and verification of tick borne diseases for adults.    Also, patients who have already been diagnosed and are seeking advice or management of current symptoms are also eligible for care at the center.  

    Co-infections:

    Co-infections General Information- Lyme Disease.org

    Video on Co-infections by Daniel Cameron, MD

    Podcast on Co-infections- Global Lyme Alliance

    Lyme Basics- What is Babesia

    Bartonella Podcast by Dr. Ed Breitschwerdt

    Bartonella, a bacteria most commonly associated with cat scratch disease which until recently was thought to be a short-lived or self-limiting infection. What is new is the association of Bartonella with a wide variety of ailments, many of them chronic and some of them life-threatening.  

    Books:

    Lyme Disease Supercharge: The Revolutionary Approach to Getting Better when All Else Fails

    New book by Bryan Rosner; Published in March 2019  

    Beyond a Glass of Milk and a Hot Bath

    by Connie Strasheim who battled severe insomnia for years. She shares insights and possible answers to this condition in her book, which is now out in paperback format 

    Bitten: The Secret History of Lyme Disease and Biological Weapons

    By Kris Newby, May, 2019
While on vacation on Martha’s Vineyard, Kris Newby was bitten by an unseen tick. That one bite changed her life forever, pulling her into the abyss of a devastating illness that took ten doctors to diagnose and years to recover.

    Toxic

    By Neil Nathan, MD, a resource book for patients and practitioners. Dr. Nathan has zeroed in on the reality of Toxicity and Chronic Disease, while providing cutting edge insights into the most effective therapies. 

    Lyme Disease Takes on Medicine by Daniel Cameron, MDDecember 2017

    How Can I Get Better?

    By Richard Horowitz, MD, February 2017 This guidebook helps individuals identify their symptoms, and figure out where to go next. It is a follow-up to “Why Can't I Get Better?”

    The Everything Guide to Lyme Disease

    By Rafal Tokarz, PhD., an associate research scientist at the Center for Infection and Immunity at Columbia. Explains the debate over "chronic Lyme disease."


    Lyme: The First Epidemic of Climate Change By Mary Beth Pfeiffer April, 2018

    https://recipesforrepair.com/about/

    A Program to Combat Chronic Inflammation and Identify Food Sensitivities” by Gail and Laura Piazza (2016)


    Antigerm Action Plans for Lyme Disease

    Renowned expert Marty Ross, MD provides step-by-step practical guides for you. Based on nearly 20 years of experience treating thousands of Lyme disease patients. Includes the full Ross Lyme Support Protocol.  Book download is free if joining his email list.  

    Research:

    Leading Research-ILADS  Published research articles authored by ILADS members

    Journal of Spirochetal and Tick-borne Diseases

    ILADS provides free  access to back issues of the Journal of Spirochetal and Tick-Borne Diseases dating from 1994-2002.

    Data, Policy and Strategic Planning:
    LDA input to National Institutes of Health Strategic Plan

    My Lyme Data

    MyLymeData is one of the largest patient-driven registries in the nation, with nearly 12,000 patients enrolled. It was created by patients, is run by patients and will address the issues that Lyme disease patients care about. If you are enrolled in MyLymeData, we thank you for providing the data that will accelerate the pace of research in Lyme disease. If you are not enrolled, please do so today. 

    Tick Borne Working Group/ Health and Human Services