Drum roll, please…..

Mike NicholsMike Nickel will be speaking at our November support group meeting in Madison.  His son, Jesse, had Lyme in 2004 and was in a wheelchair at one point in his journey.  He is now a normal college kid going to classes.  Mike started the online Wisconsin Lyme Yahoo support health group and was past President of Wisconsin’s state-wide non-profit, Wisconsin Lyme Network.  He travels statewide speaking at various Wisconsin support groups and will be answering your questions at our meeting.

I want to encourage you to attend as Mike is familiar with the various treatments as well as the Wisconsin doctors who are versed in these treatments.  This would also be a great meeting to bring family members to as he can explain the importance of support – personally understanding the crucial role family plays in the healing of the person fighting this very isolating disease.

Please mark Sat. Nov. 22 from 2-4 at the Pinney Library in Madison on your calendar.  You won’t want to miss this!

Candida the Chameleon

As a Lyme and co-infection sufferer you probably understand the ever-present danger of Candida.  We are all told to avoid sugar like the plague.  But did you know that certain vitamins, herbs, and minerals can spread Candida?  I didn’t.  Michael Biamonte, CCN, states that B-complex, iron, copper, calcium, and even vitamin D are often the culprits, and that antioxidants in high doses will protect Candida.

So what are we to do?  Biamonte believes Candida needs to be eliminated in stages starting with the killing of parasites from the intestinal tract and breaking up the colonies of yeasts and bacteria.  Phase 1 eliminates most of the Candida, sometimes taking months.  Phase 2 destroys Candida in the intestinal tract while encouraging friendly bacteria.  Phase 3 is to regain energy by getting rid of toxic metals.

Of course this is much more complicated than is sounds, but he believes strongly that the most common mistake is copious vitamins and supplements while Candida is present.

Candida, like a Chameleon, can switch from being a fungus to a yeast, and on a personal note, for 20 years I had 3 toes with nail fungus.  Six months into Lyme and Co treatment, it was all gone.  I give the credit to the tiny little pink Diflucan pill taken twice a week.  So see, there are some bennies to treatment!

For more information to to:  www.health-truth.com.  The Biamonte Center For Clinical Nutrition.  Oct. 15, 2014.  Also printed in the Examiner:  www.examiner.com/article/confessions-of-a-candida-killer-michael-biamone-c-c-n.

Word For the Day: Bontport

Lyme Disease and the various co-infections that often accompany it are a world-wide issue, and Regina Welchert writes a compelling article about the condition in South Africa.   http://www.lymenation.net/lymescape-south-africa/

While the official position there is identical to the U.S., that there isn’t any chronic Lyme, a local doctor states that not only are lions dying by the scores from it, but that every second patient he treats has it.  And the kicker is that while there are 100 known strains here, there are over 300 in Africa.

Bontport is the Afrikanns word for tick – which by the way, has sticky legs to make it automatically cling to whatever poor soul it lands upon.

Unknown  Used from Lyme Nation, posted March 11, 2014

Lyme Demonstration in NY

15085461330_4d9857ed8a_z 15249214176_11e47995fe_mhttp://pavementpieces.com/demonstrators-plead-for-lyme-disease-awareness/
By: Ben Shapiro  |  September 17th, 2014  |  Published in News

A Lyme disease silent demonstration in front of the New York Times building in midtown, displayed a large sign that read, “Lyme disease is a pandemic. Where is the coverage?” Photo Credit: Ben Shapiro

Silent demonstrators dressed in all black, wearing lime green ribbons on the arms, stood in front of the entrance to the New York Times building in midtown Manhattan yesterday afternoon calling for more awareness and press coverage of Lyme disease.
“This is really to bring awareness to the plight of Lyme disease patients, the lack of research, and the huge numbers of people that are affected,” said Jill Auerback, the Chairperson for the Hudson Valley Lyme Disease Association.
Auerback suffers from Lyme disease herself, and does not believe the state of the disease has improved at all since it was recognized 40 years ago. The initial testing to determine if one has Lyme disease often times produces false negatives, and some people who are diagnosed remain sick even after completing a standard month round of antibiotics. In fact, according to the New York State Department of Health, 10 to 20 percent of people continue to experience symptoms that include severe fatigue, muscle and join pain, and frequent fevers.

“The test is still totally unreliable,” said Auerback. “If we were to compare that with the AIDS test, which is 99 percent effective, there is no reason for that. We should have a test right now that is accurate.”
Auerback blames limited research funding for the lack of progress in the field, but also notes that different individualized responses to the disease and its treatment makes it difficult for physicians to properly diagnose and medicate patients. Auerback is concerned with an increasing number of ticks nationwide, and she believes people need to be better educated on tick prevention. Auerback had signs put up in her hometown of Duchess County, N.Y., warning residents of areas with a high population of ticks.
“We need to stop the disease. We need to stop it by stopping the ticks,” said Auerback. “You need to reduce human exposure.”
Fellow demonstrator Rachel Cipriano, 29, a native of New York City, has suffered from Lyme disease for 15 years. Cipriano hopes the continued efforts from Lyme disease advocates will put pressure on the media to give the disease the attention it deserves. She is also optimistic that the increased exposure will help better inform people who may be misdiagnosed with Multiple Schlorosis, Parkinson, and other auto immune diseases and continue to suffer.
“We want to let them know that they may in fact have Lyme disease,” Cipriano, said. “In many cases you can see that it (Lyme disease) is the root cause, so we want to save that patient suffering from their situation.”
Cipriano said young people need to know that they are not alone in combating Lyme disease. Growing up with it throughout high school and college, Cipriano felt that her friends didn’t understand when she complained of the side effects.
“It’s hard for young patients, particularly for me, growing up, I didn’t have anyone to identify with,” Cipriano said. “The words, ‘I’m tired’, don’t really encompass what it is.”

Josh Tocco representing his wife and brother-in-law at a Lyme disease demonstration in front of the New York Times building. in midtown, Manhattan. Photo Credit: Ben Shapiro
Unlike Cipriano, 31-year-old Josh Tocco does not have Lyme disease. Tocco who lives in Goshen, N.Y., volunteered to join the demonstration in support of his wife and brother in-law who suffer from the illness. Each of them had not been feeling well enough to make the hour and a half trip down to the city from Goshen.
“They’re just too sick to make the trip,” said Tocco. “They have like good days and bad days, and they’re just having bad days lately.”

Meeting for November

Our next meeting with be on November 22 from 2-4pm at the Pinney Library in Madison.

The address is:  204 Cottage Grove Road

Please bring ideas and suggestions for future meetings.

Big Shoes to Fill

Dear Madison Lyme Support folks,

I’m trying my hand today at writing my first post.  Now, remember, I’m of the “old” generation that knows just enough about computers to get into trouble.  :)  So forgive my mistakes as I’m a neophyte.  Also, try to remember that I am attempting to fill some incredibly large shoes.  How Della did all this when she was at her sickest, is beyond comprehension.  I want to thank her again for her dedication to those who are too sick to have a voice.  Her presence in the Madison area particularly and the worldwide Lyme community is a blessing to all who know her.  I remember my first emails, received with fear and trepidation, as I didn’t know where to go for help.  Her advice always proved true and valuable.  So often in this illness you find yourself in a position where you need answers, perhaps about a particular doctor’s costs or regimen, and your own brain can’t function.  This is where Della and others from the Lyme community swept in and gave me the information I needed, provided necessary feedback, and encouraged me.  I can’t tell you how desperately I needed encouragement.

So, soon and very soon, I will be setting up our next support meeting.  I would like all of you to please consider what you want from the meetings and come prepared with suggestions.  After all, this is your baby.  What helps you the most?  Does just being around others in a similar situation encourage you?  Do you have particular questions you need answered?  Are you interested in subjects such as diet and nutrition?  Perhaps we can pool our knowledge and help each other as many of us have tried various things over the years and have gained experience.

Until next time, relish the good days, endure the bad, and keep hoping and believing for better,

287Alicia

Untitled-1UPDATE;  A support group attendee has volunteered to take on the support group.  I am very thankful that someone is willing to pick up the torch.  There will be a time of transition, so please continue to be patient.  I’m confident that the meetings will continue to be a great way for people to receive support from others.  Keep checking back to the website for future meeting dates.

 

It has been 5 years since I started treatment for Lyme Disease and co-infections.  I started this group shortly after I started that journey because there wasn’t a local area support group and I was searching for support from other people who were battling this complex and frustrating illness.  It was hard to start when I was so sick and struggling so much. I took on the task to help myself and others but at this time I have decided to step down as the Madison Area Lyme Support Group leader.

Tomorrow, Sept. 6th will be the last support group meeting that I host. 
Saturday September 6th (2014) from 2pm to 4pm, Madison Pinney Branch Library, 204 Cottage Grove Road, Madison, WI 53716
 

I have met so many wonderful people through this support group. As new people continue to get infected people will always search out help and support online and face to face.  Even though I do not want anyone to fall through the cracks I have decided that I need to create space in my life for other endeavors.  It is hard for me to let go of something that I know helps people so much but, I am hoping that someone else in the Lyme community will step up and lead the group just like I did 5 years ago.  I’m willing to hand over informational brochures and materials, and give advice to anyone looking to pick this responsibility up. Basically they would be the contact for the website (which I might be able to just transfer) and the person that schedules and reserves the meetings at the libraries. You are supposed to be present at the meetings but if you had someone helping you then if you are too sick they could fill in or you just cancel the meeting and post that on the website and anywhere else you posted the meeting information.  I use to do that in the early days of treatment.

For now, I’d like to direct everyone searching for help to the many online resources and support groups listed below.

I will keep the website up for now so that people can find these groups but eventually the site may disappear when someone chooses to start their own group with another website. I will be taking the contact option down, so it’s important to use the groups below to seek help.

 

Wisconsin Lyme Network

Wisconsin Lyme Network is a statewide non-profit.  It’s a great resource that lists support groups around the state, both online and face to face.  Click on this hyper link to go to their website: www.wisconsinlyme.net. Or you can contact them directly using this email address to ask questions (including doctor recommendations).  wisconsinlymenetwork@gmail.com

 

 

Wisconsin Lyme Yahoo Support Group

Contact: Mike Nickel miken@tds.net

Group URL: http://health.groups.yahoo.com/group/Wisconsin-Lymesupport/

Please e-mail to miken@tds.net to receive information on monthly support meetings throughout the state and other help.

 

 

Wisconsin/Illinois Lyme Facebook Group

This Facebook group is a great way to connect to others who are suffering from Lyme Disease and other tick borne diseases.  Here’s the link to the group.  https://www.facebook.com/groups/wisconsinillinoislyme/

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