Archive for the ‘Uncategorized’ Category

May Meetings – Coppe Labs

Next Madison Lyme Support Group meeting: Regular meeting on May 14 from 2:30-4:30 as well as May 28 same time with Dr. David Baewer from Coppe Labs in Waukesha.

Baewer

Dr. David Baewer, Chief Medical Officer of Coppe Laboratories, will be speaking on May 28 from 2:30-4:30 at the Madison Lyme Support Group.

Baewer received his MD from the Medical College of Wisconsin where he had previously been awarded a PhD in cellular biology, neurobiology and anatomy.  His pathology studies were completed at The Johns Hopkins Hospital and a GI pathology fellowship was completed at the Medical College of Wisconsin. He has lectured on the Role of Serology in Herpesvirus Infection and most recently on Arbovirus Infection as Proposed Etiology of Antibiotic Resistant Chronic Lyme Disease.

Baewer has co-authored a number of publications in peer reviewed journals, as well as a GI text book chapter. His most recent publications have looked at the role of HHV-6 in a post-transplant patient with myocarditis and a case of fulminant hepatic failure in an immunocompetent individual.

For the support group he will explain the role of arboviruses in tick-borne diseases, provide information on the Powassan/Deer Tick virus and how it affects the MSIDS patient, particularly how it  may explain lingering symptoms in patients, and will present Coppe’s TBI research.
Hope to see you all there!

Category:

Lyme, Meetings, research, Ticks, Uncategorized, Viruses

Leprosy Drug For Lyme?

https://www.lymedisease.org/touched-by-lyme-dapsone/

“In a preliminary clinical trial of 100 patients at his Hyde Park medical office, Horowitz gave Dapsone in combination with assorted other antibiotics. He found that patients reported significant improvement of ALL symptoms, except for headache. He told of one woman who, after being on Dapsone for five weeks, said this was the best she’d felt in 12 years. Her brain fog had cleared and her joint and muscle pain had diminished considerably.

However, Horowitz found that patients who stopped treatment after they began to feel better would relapse. This was true in leprosy as well. He says successful leprosy treatment uses a 12-month regimen of Dapsone and rifampin. He is now extending the protocol with his patients to see if 12 months is the right length of treatment for them as well.

Alas, Dapsone is not without a downside. It can cause serious side-effects, such as anemia, which must be closely monitored during treatment. Furthermore, Horowitz says, there are many unanswered questions about the use of persister drugs such as Dapsone to treat chronic Lyme, and much more research is needed.

You can read Dr. Horowitz’s published journal article about the Dapsone trial here.  http://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.pdf

More about who should consider using Dapsone, and how best to minimize side-effects, will be included in his forthcoming book to be released at the end of 2016, ‘How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease.'”

 

 

Category:

Lyme, Treatment, Uncategorized

Lyme Disease Symptom Tracker

https://www.lymedisease.org/lyme-disease-symptom-checklist/

For Lyme Disease Awareness Month, the good folks at LymeDisease.org have launched a new tool on their website—the Lyme disease symptom checker. The goal is to give patients a way to determine if Lyme disease is likely. This will give them the information they need to educate themselves and their physicians about the disease. After answering a series of diagnostic questions with our tool, patients can print out a checklist of symptoms for their physicians.

It’s a brief symptoms checklist that asks up front, “Do you have Lyme disease?” Then it has people check yes or no on various questions. As they check, a text box pops up with some detailed info.

What a wonderful interactive tool that educates at the same time as discovers the likelihood of a tick borne infection.

Take it today and share with others!

Category:

Uncategorized

Buy One Documentary – Get One Free!

UNDER OUR SKIN BUY-ONE-GET-ONE FREE DVD SALE!

https://player.vimeo.com/video/96124533?title=0&byline=0&portrait=0 <p><a href=”https://vimeo.com/96124533″>Under Our Skin (Directors Cut)</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>”>http://

<p><a href=”https://vimeo.com/96124533″>Under Our Skin (Directors Cut)</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

Under Our Skin Trailer

https://player.vimeo.com/video/105289249?color=ffffff&title=0&byline=0&portrait=0 <p><a href=”https://vimeo.com/105289249″>Under Our Skin 2: Emergence &ndash; Trailer</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>”>http://

<p><a href=”https://vimeo.com/105289249″>Under Our Skin 2: Emergence &ndash; Trailer</a> from <a href=”https://vimeo.com/openeyepictures”>Open Eye Pictures</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

Emergence – Under Our Skin 2 Trailer

May is Lyme Disease Awareness Month and we’re marking the occasion with a giant DVD sale to help spread awareness about a disease that continues to cause untold suffering worldwide. UNDER OUR SKIN and it’s sequel EMERGENCE have brought unprecedented visibility to the Lyme crisis literally with millions of viewings. From Netflix & Amazon to PBS to Capital Hill to a theater near you, the films have helped change the way the public views the disease and the people suffering from it.

For the month of May, we’re offering a two-for-one BOGO Special: For every Home Use DVD you purchase, we’ll throw-in another for free. Buy one get one free; buy three get three free, and so on. You can use these free DVDs to educate friends, family and physicians – the tab’s on us! Don’t miss out on this opportunity!  http://www.underourskin.com/store  Click here to order.

SCREEN UOS IN YOUR COMMUNITY & (NOW) LOCAL THEATER!

Films are among the best tools for grassroots education and activism. Since it’s release, UNDER OUR SKIN has screened in thousands of communities by individuals like you or organizations like yours. Our Community Use DVD Set includes both UNDER OUR SKIN & EMERGENCE and is licensed for free public screenings of up to 100 people. We also have other licenses available for large scale screenings or fundraisers. For any screening we can provide you with organizational and promotional materials, as well as advertise your event on the UNDER OUR SKIN Facebook page. With almost 37,000 likes, we’re the largest Lyme-related social-media community online! Go to the Screenings page of the UNDER OUR SKIN website and fill out our “Host a Screening” form.
Now, on to some BIG NEWS! We’ve joined forces with Tugg, a web-platform that helps individuals and groups set-up customized movie screenings, to show our films in theaters across the country! This is a fantastic way to raise awareness and bring visibility beyond your Lyme community, where it might attract more movie goers and media attention. These events can also be used as organizational or individual fundraisers, and include panel discussions or even a filmmaker Q&A. Plus, it’s EASY! There are only four steps to hosting a theatrical screening:

1.) Fill out the Event Request Form and select the theater, date, and time.
2.) After theater approval, your Event Page can begin reserving tickets.
3.) Share the event with your network and confirm your screening by selling enough tickets before the deadline.
4.) Sit back and enjoy the show!

As always, feel free to let us know how we can better partner with you to make the greatest impact together. Speaking of together, below you’ll find some Lyme Awareness Month events across the the country. This May, may we educate, pontificate and activate…!

LYME DISEASE AWARENESS MONTH EVENTS

May 1: Portland, ME
LymeBuddies Kick off of Lyme Disease Awareness Month
Educational presentations: http://www.facebook.com/events/1699376360330187/

May 5: Saratoga Springs, NY
What You NEED to Know About Lyme and Other Tick-Borne Diseases
Holly Ahern, Asst. Professor of Microbiology at SUNY Adirondack: http://www.lymeactionnetwork.org/events.html

May 7: Golden, CO
Lyme and Other Tick-borne Diseases—First Rocky Mountain Forum
Speakers: Dr. Dan Cameron, immediate past president of ILADS; Pat Smith, President of Lyme Disease Association; Dr. David Martz, and others: http://www.facebook.com/events/478948055635887/

May 7: Bar Harbor, ME
Lyme Disease Symposium on Mount Desert Island
Speakers: Beatrice Szantyr, MD; Keelyn Wu, DO; Meryl Nass, MD; Richard Matthews, DC: http://www.mdilyme.org/

May 7: Binghamton, NY
Lyme Disease Conference at Binghamton University
Dr. Baghat Sammakia, PhD, Binghamton University; Dr. Ralph Garruto, PhD, Binghamton University; Ms. Amanda Roome, Binghamton University; Robert Giguere, IGeneX Labs; Dr. Tom Moorcroft, and Dr. Richard Horowitz: http://www.southerntierlymesupport.org/

May 8: Vestal, NY
“The Little Things”
A dramatic reading about 17-year-old Lyme victim Joseph Elone’s family, by Storyhouse Theater. Performance begins at 11:30 a.m. Talk following by Dr. Richard Horowitz. Free admission, but you must register in advance for tickets. More information at: http://www.southerntierlymesupport.org/

May 10: White Bear Lake, MN
Minnesota Ticks and Tick-borne Disease Prevention
Meeting of the Minnesota Lyme Association. Speaker: Dave Neitzel, of the Minnesota Dept. of Health: http://www.mnlyme.org/meetings.html

May 14: Lancaster, PA
Tick-borne Disease Patient Symposium
Keynote speaker: Dr. Daniel Jaller. Breakout session speakers include: Rita Rhoads, CNP, Dr. Martin Mulders, Dr. Norton Fishman, and Dr. Rosalie Greenburg: http://www.eventbrite.com/e/pa-lyme-resource-network-patient-symposium-tickets-21040163696

May 14: Queensbury, NY
Take Back Your Life
Day-long Lyme workshop, sponsored by Lyme Action Network. Stay tuned for details. http://www.lymeactionnetwork.org/events.html

May 15: Ashburn, VA
6th Annual Loudoun Lyme 5K/10K & 1K Fun Run
http://www.natcaplyme.org/events/6th-annual-loudoun-lyme-5k10k-1k-fun-run

May 17: Cambridge, MA
“When Your Child Has Lyme Disease: A Parent’s Survival Guide”
Guest speaker Dorothy Leland speaks about her new book at the bi-monthly meeting of the Lyme support group sponsored by the Dean Center for Tick-borne Diseases: http://www.spauldingrehab.org/assets/spaulding_pdfs/Bi-weekly-Spring-Summer-2016.pdf

May 18-21: Arlington, DC
The MayDay Project Events
The MayDay Project is sponsoring a number of direct actions and educational events during Lyme Awarness Month aimed at policy makers and politicians. For more info: http://www.themaydayproject.org/

May 19: Danbury CT
10th Annual Lyme Connection Program, Western Connecticut State University
Health Fair begins at 5 pm. Program at 7 pm. Free and open to the public. Keynote speaker: Dr Kenneth Liegner; Award to Dr. Charles Ray Jones: http://www.LymeConnection.org/

May 21: Worcester, MA
Central Mass Lyme Disease Conference
Keynote address: Dr. Charles Ray Jones. Other speakers include Dr. Steven Phillips, Dr. Kenneth Bock, Dr. Sheila Statlender, authors Jenny Rush and Dorothy Leland, and more: http://www.centralmasslymeconference.com

For more information or to contact us: UnderOurSkin.com

Category:

Activism, Uncategorized

May – Lyme Disease Awareness Month and meetings

May is Lyme awareness month

There is no one better equipped to spread the word about Lyme Disease than you – a sufferer.  There’s something authentic about relating to people your personal story.

Highlights of what’s important to share:

1.  Lyme Disease is usually a complicated illness for most people as we are infected with far more than borrelia, the causative agent of LD.  All of these pathogens work together to evade the immune system.  Symptoms vary from person to person and can be anything.  If someone is concerned, they should start by filling out some checklists which can be found here:
https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf
symptom-check-list-chart-dr-burrascano-10
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/
2.  Most general practitioners have been educated that LD is hard to get and easy to treat with 21 days of Doxycycline.  This is far from the truth unless you are lucky enough to see the tick on your arm and have the classic bullseye rash, and even then it’s Russian Roulette.
3.  Testing in a word, sucks.  The two-tiered blood testing the CDC supports (ELISA and Western Blot) is no better than a coin toss, and borrelia don’t like to hang out in the blood but rather in immunopriviledged sites like your brain and the synovial fluid in your joints.  Going to a regular practitioner and taking the standard tests, if you test negatively, will give you a false sense of security while you may very well be infected.  On the other hand, if you test positively, they will treat you with 21 days of Doxy.  If symptoms remain they are more likely to give you an anti-depressant than further treatment – while  hideous infections are allowed to fester and worsen.  While Doxy is a wonderful first-line drug it does not work against Babesia and some other pathogens.
4.  The earlier you jump on this the better.  Research shows that those who get treatment right away are far more likely to kick this than those who wait.  Since many symptoms mimic the aches and pains of age, many chalk up their symptoms to the aging process rather than a disease which can worsen over time and kill – with the ability to enter every organ in the body.
5.  After filling out the checklists above, if you have a preponderance of symptoms, get to a Lyme Literate Doctor (LLMD).  They are specially trained by ILADS (The International Lyme and Associated Diseases Society) and understand the complexity of MSIDS (multi systemic infectious Disease Syndrome – or Lyme with friends).  They typically use a far more sensitive test – that while still a blood test – shows many more elements.  They also will diagnose you clinically  – not just on what a test shows.  
6.  One of the best ways to inform folks is to have them watch the documentary, “Under Our Skin,” which does a superb job of showing the schism in the medical community as well as real people who are suffering due to the politically incorrect position of MSIDS in the medical community.  Nothing quite replaces seeing 30-40 people all saying, “I was diagnosed with MS, Lupus, Chronic Fatigue, and the whole time I had Lyme Disease.”  It is a sad but effective movie that most accurately expresses what MSIDS patients face.  For me it nailed my diagnosis before I had seen one doctor – it’s that good.  I bought 4 copies and dole them out to people.  It’s the best investment in people you could make – besides your time.
7.  Bring people to your local support group.  Being in a room full of people fighting the same battle is something to behold.  Often, this disease isolates folks, even from their own family and friends – as it’s almost impossible to believe unless you are walking the path and have experienced it personally.  The sufferers that bring their spouses and family feel much more supported – but for those that don’t have support – the support group is a great place to feel understood and believed, as well as to learn as we educate each other. Many have been marginalized for so long from supposed “professionals” that they are quite beaten down and low.  Come up along side them and listen – supporting them in any way you are able.  Those actions will do far more than you could ever know.
8.  Feel free to copy these things to keep them in your purse or car.  That way you have some information at your fingertips.  Also, https://www.lymedisease.org/lyme-basics/resources/books-articles-videos-links/ here are some great resources to check out.
9.  Never give up hope.  
10.  Next Madison Lyme Support Group meeting:  May 14 from 2:30-4:30 and May 28 same time with Dr. David Baewer from Coppe Labs in Waukesha.  Bio forthcoming.

Category:

Activism, Babesia, Lyme, Meetings, Treatment, Uncategorized