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.
 

  • 2018
     
    UPCOMING MEETINGS

    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

     November 10th, Saturday
    Location: TBA
    2-3 pm: Guest Speaker/topic TBA
    3-4 pm: Support and Sharing


     

    PLEASE DIRECT ALL REQUESTS FOR INFORMATION ABOUT THIS EMAIL AND/OR OUR TUCSON GROUP, AS WELL AS LYME TREATMENT IN AZ, 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 List, ensuring that you will receive future monthly communications from our group. Both are great resources!  
     
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    ITEMS OF SPECIAL INTEREST
     
    1.  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.
     
    2. 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!   
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    ONGOING RECOMMENDED WEBSITES  
    The first three websites have links to help find medical providers:
    www.AzLDA.org  For activities in Arizona
     
    www.danielcameronmd.comwww.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 with Lyme Disease.
    *********************
    LYME in the NEWS
     Books:
     1.  “Lyme Disease Takes on Medicine” by Daniel Cameron (December 2017).
     2.   “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?”.
     3.  “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."  
    Links:
    1.  https://themighty.com/2018/05/lyme-disease-diagnosis-women/.  The Difficulty Women Face In Receiving A Lyme Diagnosis
      
    2.  https://www.stripes.com/news/medical-officials-in-europe-urge-caution-as-disease-laden-ticks-are-on-the-prowl-1.540829             Military Medical officials in Europe urge caution as disease-laden ticks are on the prowl
     
    3.  https://drjockers.com/12-strategies-improve-pots-naturally/ Twelve Strategies to Improve POTS Naturally 
         
    5.  https://hubs.ly/H0chL710 From ProHealth.comStudy Shows that 100% of Morgellon's Patients Have Borrelia Burgdorferi Infections.
     
    6.   https://www.prohealth.com/library/a-deep-look-at-the-symptoms-of-six-major-lyme-related-infections-41139 “A Deep Look At the Symptoms of Six Major Lyme Related Infections”  by Wayne Anderson N.D.
     
    7.   https://www.prohealth.com/library/how-electromagnetic-pollution-worsens-lyme-disease-and-what-you-can-do-about-it-44007 This informative article spells out the dangers and sources of EMFs, and offers suggestions for lowering EMFs in our home environments as a means of moving towards healing.
     
    8. WashingtonPost.com  The Big Number: Lyme disease is now in 100 percent of the U.S. If you thought you were safe from Lyme disease because you don’t live in New England, where the tick-borne illness first appeared, think again. Now, 100 percent of the country — all 50 states plus the District — has residents who have tested positive for Lyme, a bacterial infection that can cause a wide variety of symptoms, including joint aches, fatigue, facial palsy and neck stiffness.
     
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     UPDATES FROM PROMINENT LYME ORGANIZATIONS:
     
    FROM www.ILADS.org   (International Lyme and Associated Disease Society):
    1.   http://www.ilads.org/lyme/treatment-guideline.php Download the 2014  ILAD'S Treatment Guidelines.
     
    2.   http://www.ilads.org/lyme/lyme-quickfacts.php Review Lyme Disease Facts.  According to the CDC Lyme Disease is the fastest growing vector-borne infectious disease in the U.S.  Short term treatment courses have resulted in the upwards of  a 40% relapse rate, especially if treatment is delayed. Up to 50% of ticks in endemic areas are infected.
     
    3.  http://www.ilads.org/education/member-publications.php Link will allow you to download papers and presentations from ILADS
     
    4.  2018  Journal Publications:      
     https://www.ncbi.nlm.nih.gov/pubmed/28887186.   To test or not to test? Laboratory support for the diagnosis of Lyme borreliosis. Horowitz RI, Lacout A, Marcy PY, Perronne C.
    and
     
    5.  ILADEF Physician Training Program The Training Program provides medical and other healthcare practitioners the opportunity to study with Lyme-literate healthcare professionals. Participants will develop the skills necessary to properly diagnose and treat Lyme disease, and return to their community with enhanced skills and the ability to provide superior care to Lyme patients.
     
    6. Consider donating your old car to ILADS for a 100% tax donation
     
    FROM  www.lymediseaseassociation.org.   Lyme Disease Assoc. (LDA):
       
    1.  October 27 & 28, 2018 LDA/Columbia University - 19th Annual Lyme/TBD CME Scientific Conference in Providence, RI
     
    2.  The LDA has been designated as a national charity included in the 2018 Combined Federal Campaign (CFC) Charity List. CFC is part of the Office of Personnel Management (OPM). Each year, federal employees are provided with lists of approved charities for their workplace giving through the CFC. The LDA has met the requirements and been a part of CFC for 13 years running. LDA's administrative and fundraising costs were determined to be only 3.8% for 2017, meaning 96.2% went directly to programs.
     
    3.  Unfortunate news:  
    The London-based National Guideline Centre has published new guidelines for treating Lyme disease on the National Guidelines Clearing House. The Guidelines appear similar in nature to the IDSA Guidelines and will not provide a benefit to patients with chronic Lyme disease. They generally provide for a 21 day treatment regimen.
     
    4. New Lyme Vaccine in Clinical Trials
     
    An article on a new vaccine for Lyme disease, "New Effort for Lyme Disease Vaccine Draws Early Fire," by Sumathi Reddy, appeared in the Wall Street Journal on July 9, 2018. The article, which includes a quote by LDA President, Pat Smith, reports that a European company, Valneva SE, is in clinical trials for a vaccine for Lyme disease, which has been fast tracked by the FDA.
     
    FROM  www.lymedisease.org. (LDo):  
    Note: You can join lymedisease.org and have access to the quarterly digital Lyme Times and all the past issues. 
     
    1.  The following articles/excerpts were written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications, and co-author of "When Your Child Has Lyme Disease: A Parent’s Survival Guide". Contact her at dleland@lymedisease.org .
     
    https://www.lymedisease.org/touchedbylyme-nonrelevant-tick-bite/.  "Non-Relevant" tick bite puts child in hospital"  By Gina Elizabeth, of southwest Pennsylvania, tells the story of her four year old who presented with a rash and history of bug bite.  Physicians found this information to be non-relevant, landing the child in the hospital. Recent reports say Pennsylvania has the highest number of Lyme cases in the whole country.
     
    https://www.math.ucla.edu/news/professor-deanna-needell-receives-nsf-big-data-grant-work-lyme-disease.   For many years, Deanna Needell experienced severe stomach pains, chronic headaches and uncontrollable muscle spasms—which all turned out to be caused by Lyme disease.Now a professor of mathematics at UCLA, Deanna uses her math skills to help bring about a better future for people with Lyme disease. Working with an $800,000 grant from the National Science Foundation, she and her team are analyzing millions of data points from LymeDisease.org’s MyLymeData patient registry.  Their goal is to uncover patterns of symptoms that could lead to better tests and more effective treatments.
     
    2.   Https://www.lymedisease.org/touchedbylyme-fairhealth-wsj/ California fifth in nation for Lyme insurance claims, And guess what fellow Arizonans -  Lyme doesn't stop at borders)For years, the CDC has put out information saying that 95% of Lyme cases are located in just 14 states, sending the (inaccurate) message that the rest of the country is essentially Lyme-free. (See: Why doesn’t CDC count Lyme disease cases in the South and the West?) Now, the Wall Street Journal has published an eye-popping article that tells a different story.
     
    3.  Join Lymedisease.org from 8/1 thru 8/31/18 and received 25% off all memberships.  Join or extend your current membership and support their mission. 
     
    4.   https://www.lymedisease.org/mylymedata/   We have over 10,000 participants now!  Add your name to MyLyme Data to help find a cure for Lyme.
     
    5.  https://www.lymedisease.org/draft-tbdwg-report-congress/ The Tick-Borne Disease Working Group will present its first report to Congress in December 2018.

    The federal panel has completed its draft report, which now goes to various government agencies for review.  Anything more than copy edits will come back to the Working Group and require another meeting. If needed, that meeting will be held in November. Click the weblink to read the draft report. 

    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!