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


 

Phoenix Chapter

NEW MEETING GROUP IN TEMPE

                                                           Monthly support meeting:

 

Pyle Adult Recreation Center | 655 E. Southern Ave. | Tempe, AZ 85282
602-635-0005www.tempe.gov/pyle
*Southwest corner of Rural & Southern

Tempe Support Group Meeting

1st Saturday of each Month 1-3pm

2018

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TBA 2018

 

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Our website is: www.azlyme.org
 

Questions can be emailed to: azlymedisease@gmail.com 
 
The Facebook group is Arizona Lyme Disease Association Support Network. Please follow us on Facebook also, at Arizona Lyme Disease Association

For more information please contact: Michelle.Louie@azlyme.org 

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


2018 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

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    Saturday, May 11, 2019  
    Tucson meeting will be canceled this month
    Location: Woods Memorial Library
    2-4 pm:  Topic: TBA
    ----------------------------
    Saturday, June 8, 2019
    Location:TBA
    2-4 PM: Topic: TBA
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    PLEASE DIRECT ALL REQUESTS FOR INFORMATION ABOUT THIS EMAIL AND OUR TUCSON GROUP TO OUR CONTACT PERSONS JANE AND PAULA. Paula may be reached by email at
    paulaazlyme   @   gmail.com, and Jane by phone at (520) 529-0221. They can also help to see that your name will be placed on our Contact eList, ensuring that you will receive future monthly communications from our group.  Both are great resources!
    *****************************

    ITEM STILL NEEDED: Large screen, flat screen TV or office type projector that could be donated to the Woods Memorial
    Library, where our group often meets.   To donate please contact either the head Librarian at (520) 594-5445,Or Marie at 520-888-3646, Thank-you!
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    The Ultimate Guide to Traveling With Chronic Pain
    ONGOING RECOMMENDED WEBSITES
    The first three websites have links to help find medical providers:
    www.lymediseaseassociation.org,
    www.ilads.org
    www.lymedisease.org.
    www.AzLyme.org  
    www.globallymealliance.org
    www.betterhealthguy.com
    www.danielcameronmd.com
    Www.enviromentalanalytics.net For mold
    and indoor air quality testing  
    https://natcaplyme.org/prevention/#preventing-tick-bites  
    You may want to share this site with friends and family!
    https://www.facebook.com/WhenYourChildHasLyme/?
    “WHEN YOUR CHILD HAS LYME: A Parent’s Survival Guide"
    https://www.iseai.org The International Society for Environmentally
    Acquired Illness
    www.https://lymediseaseassociation.org/about-lyme/lyme-kids-a-schools.This site offers practical guidance on how to prevent, screen, treat, and educate children about Lyme Disease.
    *********************

    LYME in the NEWS and HEALTH LINKS
    1.  Www.capvet.org/maps. Who says we don't have Lyme in AZ?  According to the Companion Animal Parasite Council there have been 26 positive cases of Lyme Disease, 31 positive cases of Anaplasmosis,  and 142 positive cases of Ehrlichiosis found in dogs in the state of Arizona during the month of January, 2019.
    Go to the website and hover over and click on various parts of any state.  Here you can see the incidence for each county.  The group says the actual incidence is a least 30 times that of what's diagnosed and reported on the map, since they are just 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.
     

    2.   https://www.focusonlyme.org/2019-patient-forum  Focus On Lyme, is hosting its 2nd annual Patient Forum in Scottsdale, AZ on March 16, 2019, from 9am-12pm.  Cost is $25. This forum brings the top researchers and clinicians to share the latest in evidence-based treatment options. This is a great event for local physicians, patients and caregivers. Click on the website for information about speakers and ticket purchasing.
    3.  https://youtu.be/Fr61GV8JCYQ Dr. Al Miller is a retired Mayo Clinic physician who has a four part YouTube series on Lyme.  He addresses chronic lyme, the importance of proper testing, and also the potential role of Lyme in neurodegenerative diseases (ALS, Ms, Parkinsons).  Each part is about 4 minutes long.  
    4.  https://iseai.org
    New medical group ISEAI.org , Co-founded by Tucsonian Mary Ackerley, MD.  ISEAI is a nonprofit professional medical society that aims to raise awareness of the environmental causes of inflammatory illnesses and to support the recovery of individuals affected by these illnesses through the integration of clinical practice, education, and research.  They are preparing for May 3-5, 2019 Inaugural Conference near Phoenix, with a terrific great line up of speakers, Lyme Specialists Dr. Richard Horwitz MD and Dr. J. Burrascano MD.

    5.   HTTP://DANIELCAMERONMD.COM/BORRELIA-SPIROCHETE-MASTERS-EVADINGIMMUNESYSTEMFBCLID=IWAR3BMQL6GKW6BGNTL0B8A9TLDODI9FKIAEA-EQ-CYFACC1QXRJLRJNZYGAY.
     Read about how the Borrelia spirochetes are masters at evading immune system.
    6.  
    https://www.swissinfo.ch/eng/multimedia/swiss-tick-plague_nation-urged-to-vaccinate-against-tick-borne-disease/

    Ticks have become such a menace across Switzerland that the government is urging everyone to get vaccinated against one of the diseases they cause - early summer meningo-encephalitis (ESME). Health insurers will reimburse vaccination costs.

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    RECOMMENDED BOOKS
    1.“Beyond a Glass of Milk and a Hot Bath by Connie Strasheim. The author had battled severe insomnia for years. She shares insights and possible answers to this condition in her book, which is now out in paperback format. To learn more, see:https://conniestrasheim.org/new-products-
    2. Bitten: The Secret History of Lyme Disease and Biological Weapons”  by Kris Newby Hardcover – May 14, 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.
    3. Toxic by Dr. Neil Nathan, MD is a resource book for patients and practitioners. Dr. Nathan has zeroed in on the realityof Toxicity and Chronic Disease, while providing cutting edge insights into the most effective therapies. This is a must read for anyone serious about healing chronic illness.
    4. “Lyme Disease Takes on Medicine” by Daniel Cameron (December 2017).
    5.“How Can I Get Better?”, Richard Horowitz (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?”.
    6.“The Everything Guide to Lyme Disease” by Rafal Tokarz, PhD, associate research scientist at the Center for Infection and Immunity at Columbia. Explains the debate over "chronic Lyme disease."
    7.“Lyme:The First Epidemic Of Climate Change by Mary Beth Pfeiffer (April,2018)
    8.“Recipes for Repair: The Expanded and Updated Second Edition: A 10 Week Program to Combat Chronic Inflammation and Identify Food Sensitivities” by Gail and Laura Piazza (2016)
    9.“The Ross Lyme Support Protocol: Lyme Disease Treatment Guideline for the Self-Starter” Kindle Edition by Marty Ross MD  
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    ABOUT US:
    We at azlyme.org  try to make each meeting educational. Most meetings will feature a guest speaker who will share treatment or experiences related to Lyme Disease.

    The Arizona Lyme Disease Association  is a 501(c) tax exempt
    entity under NEST Inc., organization run by volunteers.   We depend upon donations to help us offset the cost of advertising, maintaining the website, and educational projects promoting Lyme awareness.Should you choose to donate, please make your check payable to AzLDA and mail to: AzLDA PO Box 35637 Tucson, AZ 85740. You will receive a receipt for your donation, and of course all donations are tax deductible.


     

    UPDATES FROM PROMINENT LYME ORGANIZATIONS:
    FROM www.ILADS.org (International Lyme and Associated Disease Society)
    ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme and associated diseases through research, education and policy.
     

    1.https://www.ilads.org/ilads-conference/chicago-2018/
     42 minute video with Joseph Burrascano, MD "The History of Lyme Disease"
    2.http://www.ilads.org/lyme/lyme-quickfacts.php.
    Reviews Lyme Disease Facts. Short term treatment courses have resulted in the upwards of a 40% relapse rate, especially if treatment is delayed.
    3.http://www.ilads.org/education/member-publications.php.
    This Link will allow you to download papers and presentations from ILADS.
    4.https://www.ncbi.nlm.nih.gov/pubmed/28887186.
    To test or not to test? Laboratory support for the diagnosis of Lyme borreliosis.  2018 Journal Publication. A Position Paper
    5.https://www.dovepress.com/aggressiveness-violence-homicidality-homicide-and-lyme-disease-peer-reviewed-article-NDT7.  Peer reviewed article on aggressive violence as it relates to Lyme.
    6.  https://www.ilads.org/research-literature/lyme-disease-basics-for-providers/.
      Are your health care providers open or interested in learning more about Lyme Disease? Refer them to ILADS.org. Here they can also learn about the Lyme Fundamentals Course.

    7.  The 20th Annual Scientific Conference will be held on Thursday, October 31 - Sunday, November 3, 2019, at the Westin Copley
    Place in Boston, MA.
    8.  https://www.ilads.org/research-literature/leading-research/  Resource for published research articles authored by ILADS members.

    From  www.lymediseaseassociation.org (LDA):

    1. Need the name of a Lyme Literate MD or healthcare practitioner ?  This site will help you find one. The LDA offers information on all things Lyme including  ( but not limited to) symptoms, treatment, diagnosis, physicians, educational material, legislation, and policy making.  
    2.Http://rynoskin.com.  Chemical Free Clothing for Tick Bite Prevention. There are many different kinds of clothing available to help in tick bite prevention. One of those is chemical free. Rynoskin is ultralight 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. Clothing items include: Shirts, pants, hoods, gloves and socks.
    3.  
    https://www.lymediseaseassociation.org/about-lyme/cases-stats-maps-a-graphs.  Check out the numbers of Lyme Disease cases in the US.  The Lyme Disease Association Inc. (LDA) has been working for 28 years to stop the spread of Lyme and TBD and to find a cure for chronic Lyme disease. LDA has educated multi-state officials from legislators to governors to health departments and continues to work with county and local officials who often are looking for ways to control tick-borne diseases in their specific areas, which may be more heavily endemic than the state at large.
    4.   https://www.lymediseaseassociation.org/images/NewDirectory/Resources/Printables/Current/LDA_SymptomList.pdf.    Lyme Disease Signs and Symptoms updated2017
    5.  https://lymediseaseassociation.org/conference/prior-scientific-conference
    The Lyme Disease Association has been providing fully accredited continuing medical education (CME) Lyme & tick-borne diseases conferences since 1999. Each conference has featured more than a dozen national and international researchers and physicians speaking on a wide variety of topics including epidemiology, the organisms causing tick-borne diseases, proteins, diagnosis, treatments, cognitive difficulties, vaccines, veterinary issues, ticks, and mapping of genomes.  

     FROM www.lymedisease.org. (LDo):
    Note: You can join lymedisease.org.  Members of LDo enjoy exclusive access to online issues of The Lyme Times, one of the most respected publications in the industry covering Lyme
    disease and other tick-borne diseases. This premier, quarterly magazine looks at issues that aim to educate and improve patients’ lives.
    1.    https://www.lymedisease.org/better-lyme-diagnostic-tests/
     New Lab Tests for Lyme Although the CDC has not promoted any improvements in testing since 1994, new Lyme Diagnostic tests are finally becoming available through private labs. One lab, IGeneX, has developed two new immunoblot tests capable of detecting multiple species of Borrelia . The “Lyme ImmunoBlot” test is approved for use in all states including New York. The “TBRF ImmunoBlot” is currently undergoing validation review by New York State, Department of Health and thus is available to all US residents outside of New York. Go to the website above to view a list of the various species of Borrelia that the new tests are capable of detecting. What’s most disturbing about these numbers is the huge discrepancy between the positive test results and the number of cases reported by the CDC.

    2.  More tick bites = more sick people
    Ticks have undergone a population explosion over the past two decades, with Ixodes ticks, the primary source of Lyme disease, now found in nearly 50% more U.S. counties than in 1996.The reasons for the explosion of tick populations involves complex human and environmental factors and varies by geographic region. Experts feel the major contributing factors are: warming winter temperatures,migrating bird patterns, changes in landscape including land use and fragmented forests, abundance of vertebrate hosts (mice, deer, squirrels, etc.), reductions in natural predators (foxes, bobcats, etc.), invasive and non-native plant species, and accidental transport by humans (pets and livestock).
    3.https://www.lymedisease.org/lyme-disease-symptom-checklist/
    Do you have Lyme Disease? Check your symptoms.   This is the message we have used for AzLDA's (Tucson group)  public service billboard(s) along 1-10 near Eloy (still up) and was used on Speedway Blvd in 2017.  As funds allow we will be using it or a similar one again for our May Lyme Disease awareness month project.  
    4.https://www.lymedisease.org/personalized-lyme-disease-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. This is the type of information that patients want to know and that is why LDo. conducted this study.
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    LOCATING OUR MONTHLYMEETINGS IS EASY! The Tucson Chapter of the Arizona Lyme Association meets 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 2-4pm 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 at Paulaazlyme@gmail.com or call Jane at (520) 529-0221. Also check out our website at
    www.azlyme.org

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    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.

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    AZLDA
    PO Box 35637
    Tucson AZ 85740

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     UPCOMING EVENTS

  • We hope to see you there!