As all Lyme and Co sufferers know, treatment is a virtual labyrinth.  You have to support your gut, you have to treat the three forms of Borrelia, you usually have to fight against various protozoans, fungus, virus, and things they probably haven’t even named yet!

The following article explains why we get so ill and why it’s so difficult to treat.  Dr. Horowitz calls it MSIDS, or “multi-systemic infectious disease syndrome,” as the term Lyme Disease, frankly just doesn’t explain things adequately from a patient or physician’s perspective or do justice to our suffering.  And perhaps if we can clearly label and define this horrendous disease(s) we will finally start to break through the current barrier that puts is in an isolated underground.

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-ticks-transmit-a-world-of-disease-and-co-infections-into-the-lives-of-lyme-patients.html

“In the study, researchers collected local ticks and allowed them to feed on laboratory rats that had been bred in captivity and were free of disease. Afterward, they examined the ticks and the rats for bacteria believed to cause disease. Findings? The ticks contained 373 types of bacteria and had transmitted 237 to the rats. The authors concluded there is “unambiguous evidence that there are as-yet unidentified pathogens associated with ticks [which] increases the risk of multiple infections in humans, [leading] to more severe clinical manifestations.”

A single bite can transmit multiple tick-borne diseases or a victim may be co-infected through multiple tick bites from multiple ticks. According to a study of patients in Connecticut and Minnesota, 20% of patients with Lyme disease also showed evidence of a co-infection. LDo’s own recently published survey of over 3,000 patients with chronic Lyme found over 50% had at least one co-infection and 30% had two or more co-infections.

The most common co-infections in the LDo study were Babesia (32%), Bartonella (28%), and Ehrlichia (15%) while a study by Dr. Janet Sperling in Canada found that the most common were Bartonella (36%), Babesia (19%), and Anaplasma (13%).

All reported tickborne diseases have increased significantly over time according to the Institute of Medicine. Between 1992 and 2006, the incidence of Lyme disease increased 101%. Between 2000 and 2008, the incidence of Rocky Mountain Spotted Fever (RMSF) shot up over 400%. Between 2000 and 2007, the incidence of anaplasmosis rose by 275%, while the incidence of ehrlichiosis increased by more than 100%.

Many co-infections threaten more than just the tick host. For example, Babesia can be passed from mother to unborn child and by transfusion. A recent CDC article reveals that the percentage of ticks infected with Babesia in Maine increased from 29% in 1995 to 60% in 2011. A similar study in New York showed that the Babesia co-infection rate was twice as high as previously thought. This increase in infection rates puts residents, babies, and the blood supply at greater risk.”

This is an excellent article to have in your arsenal for educating others.  We simply must get the word out that this isn’t just our problem.  It’s become everyone’s problem.  And it’s far more prevalent than H1N1 or Ebola – which always seems to get all the press.

I encourage you to send family and friends information such as the article above which is short, sweet, and to the point, about how prevalent Lyme and Co really is, how debilitating it can make you, and how it will change your life.  Something within me tells me that WE are going to have to do the footwork on this one.

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

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