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


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.
 

  • 2018
     
    UPCOMING MEETINGS
    AGENDA - July 14, Saturday
    Location: Woods Library on 1st Ave in Small Conference Rm.
     
    2-3pm:  Discussion of the New Yorker article “Memoirs of Disease and Disbelief” by Porochista Khakpour
    You can access the article at:   https://www.newyorker.com/magazine/2018/06/04/memoirs-of-disease-and-disbelief.
All are encouraged to read this important and often disturbing writing which chronicles the  dismissal of a Lyme patient by many in the medical community prior to attending this meeting. You may find your own story threaded within these pages.
    3-4pm: Support and Sharing.
     

    UPCOMING SUPPORT GROUP MEETINGS

    AUGUST 11, Saturday

    Location:  Woods Library on 1st Ave in Small Conference Rm.

    2-3pm:Topic:  "The Breath"  Learn about and practice ancient  breathing  techniques.  Some breathes can calm the mind/body, others can be used to energize it.  
    3-4 pm:  Support and Sharing

     
    September 8, Saturday

    Location: Woods Library on 1st Ave in Small Conference Rm.

    2-3 pm:  Topic  to be announced

    3-4 pm:  Support and Sharing

     
    October 13,  Saturday

    Location: TBA
    2-3pm: Guided Vizualization

    3-4 pm: Support and Sharing

     

    ITEMS OF SPECIAL INTEREST
     
    1.  Low Dose Naltrexone:  
    Two months ago our group hosted a presentation on the “Use and Benefits of Low Dose Naltrexone”  (a prescription medicine known as LDN) LDN may help with management of chronic Lyme.  Since you may be among the many who are interested in learning more about LDN, we are listing the following sources.  We offer these links so that you may further educate yourself in deciding whether LDN is something about which you wish to ask your healthcare practitioner.  
     
    Articles on LDN and Lyme disease:
     
    YouTube videos to give you a sense of the variety of uses, mainly improving the immune system,  anti-inflammatory, decreasing pain, and improving mood:
    https://www.youtube.com/watch?v=G93A3WhXxEk.  12 minute overview by Dr. Common Sense.  
    https://www.youtube.com/watch?v=rXB8lztHZp0    30 minute video with Dr. Mercola and Dr. Cowan.
    https://www.youtube.com/watch?v=0RqnpjGg31    28 minute video with Dr.  Andrew David Shiller on Neuropathy and LDN.
     
    and https://www.youtube.com/watch?v=PKFDBnIsPaA. Both offer information on how to mix LDN using a 50 mg tablet  (You can also cut the tablet in half -->25mg, then mix with 25 cc of water) LDN can also be purchased from several compounding pharmacies with a provider's prescription.

    2.  ASK YOUR PHARMACIST ABOUT THIS POSSIBLE MONEY SAVER FOR YOU!!!
    The Washington Post Share to FacebookShare to Twitter (7/5, Firozi) “The Health 202” blog reports that some people are paying more for their prescription drugs than they need to because of “gag clauses” that prohibit pharmacists from telling customers that the drugs they are buying may be cheaper if they do not purchase them through their insurance plans. While some members of Congress are trying to prohibit gag clauses, it is currently up to you to ask your pharmacist about this.
     
    3. NEEDED :  
If anyone has a large, flat screen TV or office type projector that they are not needing, the Woods Memorial Library, where we are now often meeting, does not have them. They were broken and never replaced. It would be beneficial to our group if these items were available. If you or someone you know would like to donate one please contact either the head Librarian at (520) 594-5445, or Marie at 520-888-3646,  Thank-you!
  

    LYME IN THE NEWS AND VIEWS

    1. Watch/listen to  Dr. Christine Green's 37 minute talk on Lyme Stealth Pathogens presented at the recent MyLymeData California conference www.lymedisease.org   LYMEPOLICYWONK: Video of Dr. Christine Green’s MyLymeData talk. Go to lymedisease.org and scroll, down to Dr. Christine’s talk.
     
    2. On June 29, 2017, Lord Astor of Hever gave a speech about Lyme in the Queens Speech debate in Parliament in the UK. Lord Astor called for mandatory training of doctors in Lyme disease and castigated the IDSA guidelines that British health officals follow. Lord Astor of Hever's daughter suffers with Lyme.  The speech gained international coverage as US charity lymedisease.org reported on the speech as did Dr. Richard Horowitz,  a noted Lyme Literate physician and author from the United States.
     
    You can access Lord Astor of Hever's speech here:
     
    3. www.ilads.org Offers basic information about Lyme, ILADS position paper, officers and directors, events, articles and presentations, related sites and membership application.
     
    4. MyLymeData.org needs your involvement. Help collect valuable data on Lyme disease. Your confidential input will help to make a huge contribution towards finding a cure.    Our goal is 500 Lyme patients from Arizona be registered by the end of the year.  This research is expected to gather more data about Lyme disease than any previously published research study.  Its goal is to build a patient-centered research community.  That’s what patient-powered research is about! For an example on the survey's outcome relating to the frequency of misdiagnosis with other neurological conditions see a blog written by Lorraine Johnston https://www.lymedisease.org/lymepolicywonk-antibiotics-ms/
     
    Recommended websites for those desiring to know more about Lyme Disease: www.lymediseaseassociation.org    www.ilads.org  www.lymedisease.org. andwww.needymeds.org (which may offer assistance to those struggling with the costs of medications).   

    LYME IN THE NEWS 

      *Huffington Post has a very informative article entitled, “What the Media Don't Tell You About Lyme Disease (But Should)".  The article exams the number of patients contracting Lyme in a year in the US, and compares that to the number of patients with AIDS and Zika.  Read the full article and see the discrepancy in dollars spent for research and treatment of these patients. You will certainly want to pass it on to others. Http://www.huffingtonpost.com/entry/what-the-media-dont-tell-you-about-lyme-diseasebut_us_5900678fe4b06feec8ac91f3 *
     
    *MyLymeData.org needs your involvement. Help collect valuable data on Lyme disease. Your confidential input will help to make a huge contribution towards finding a cure. Currently we have approximately 80 participants from Arizona.  Our goal is 500 from Arizona by the end of the year.  There are well over 7,000 participants nationally and growing.  MyLymeData (www.mylymedate.org) uses big data research tools that allow patients to quickly and privately pool their data to determine which treatments work best.  This research is expected to gather more data about Lyme disease than any previously published research study.  Its goal is to build a patient-centered research community.  That’s what patient-powered research is about!For an example on the survey's outcome relating to the frequency of misdiagnosis with other neurological conditions see a blog written by Lorraine Johnston https://www.lymedisease.org/lymepolicywonk-antibiotics-ms/ *The Lyme Disease Association announces that Richard Horowitz, MD, has released his second book, “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease”.  This edition contains important scientific updates on Lyme, other borrelia species, associated co-infections (such as Babesia, Bartonella, rickettsia infections, and Tularemia) with a new chapter on pulsing and “persisters.”
     
    *The Lyme Disease Association announces that its 18th Annual Lyme & Tick-Borne Diseases Scientific Conference will be held September 23 & 24, 2017 in Philadelphia, PA at the Hilton Penn’s Landing.  This series of past conferences held in cities across the US have included the top researchers in the US and the world on topics that include Lyme disease testing, the mechanisms of disease persistence, Lyme disease treatment and antibiotics, biomarkers, neurologic and cardiac Lyme, case studies, other tick-borne diseases, epidemiology, and tick control.
     
    CURRENT VIDEOS YOU MAY WANT TO VIEW:   
    Watch/listen to  Dr. Christine Green's 37 minute talk on Lyme Stealth Pathogens presented at the the recent MyLymeData California conference www.lymedisease.org   LYMEPOLICYWONK: Video of Dr. Christine Green’s MyLymeData talk. Go to lymedisease.org and scroll,down to Dr. Christine’s talk.
     
     Watch: Lord Astor of Hever: British House of Lords speech today - UK 29-06-2017Lord Astor called for mandatory training of doctors in Lyme disease, and castigated the IDSA guidelines…
     
    Recommended websites for those desiring to know more about Lyme Disease: www.lymediseaseassociation.org    www.ilads.org  www.lymedisease.org. andwww.needymeds.org (which may offer assistance to those struggling with the costs of medications.)   

     

    NOTE OF INTEREST

    From lymediseaseassociation.org:

    The Lyme Disese Association announces that Richard Horowitz, MD, whose first book reached New York Times #1 Beseller in Science, just released his second book, “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease” through St. Martin’s Press, February 2017. This edition contains important scientific updates on Lyme, other borrelia species, associated co-infections (such as Babesia, Bartonella, rickettsial infections, and Tularemia) with a new chapter on pulsing and “persisters.”


     

    TRENDING LYME NEWS:  

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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!