Lymenaide Holiday Bazaar

Lymenaide is proud to announce that this year we will be hosting a virtual holiday bazaar. The aim of the Lymenaide Holiday Bazaar is to showcase Lyme artists/crafters, spread awareness about Lyme disease, offer the Lymies a way to make some money, and to encourage people from within and from outside the Lyme community to support these artists and crafters by doing their holiday shopping online from our vendors this holiday season.

Who can participate-
Anyone from the Lyme Community is eligible to purchase a booth. Artists, photographers, jewelry makers, crafters of all kinds as well as representatives of Mary Kay, Scentsy and the like.

Non-Lymies are who are involved with the Lyme community are also welcome as well as artists and craters who have a Lyme disease awareness line of products. Non-lymies must be crafters, no Mary Kay/Scentsy options here.

Not crafty? That is OK. We are accepting booths for Lymies that are filled with donations from creative friends and family. These booths must be filled with donation items, no Mary Kay/Scentsy and no booths set up to ask for donations without any items to sell.

This is primarily a virtual craft faire. We know that there are many talented artisans within our community and we want to promote you!

How it works-
The Lymenaide Holiday Bazaar site is up and running. We just started adding artists over the weekend. Have a look at the site to get a feel for how it works- http://lymenaideholidaybazaar.blogspot.com/p/welcome.html

The steps for getting a booth are fairly easy and explained on the site in more detail.

1. Pick a template and download it.
2. Complete the template yourself using a photo editing program or opt to have someone at Lymenaide do it for you (additional charge applies).
3. Send your completed template along with a 100-150 word description to Ashley at ashvantol@lymenaide.com don’t forget to include the links you would like to have shown on your booth.
4. Follow the PayPal link on the Lymenaide Holiday Bazaar site to pay for your booth. Don’t delay too much, prices go up on October 15^th. See Prices on the Join Page.

NOTE- the Lymenaide Holiday Bazaar is not designed to sell items for individuals. You must have an online venue from which to make the actual sales. This is easy to set up on a blog with PayPal payments, by starting an Esty shop at Etsy.com, or by listing your items on Ebay.

The artists and the Bazaar will be promoted throughout the Holiday season by Lymenaide and all of our affiliates on facebook, twitter and through the individual blogs.

The Holiday Bazaar will run from now until January 10, 2011. We think this will be an exciting and fun event for the Lyme community this season. We hope you will join us and support your fellow Lymies by doing your holiday shopping online this holiday season. Don’t forget to invite your friends and family!

Visit the Lymenaide Holiday Bazaar

 

The Semantics of Lyme

This morning I read an article online that at first pissed me off. I try to keep an open mind so I kept reading. By the end it only half pissed me off. The article is entitled  Another Perspective on Lyme Disease it was written by David Itkin, an infectious diseases doctor in Portsmouth.

In the first paragraph he defends the IDSA and their Lyme guidelines. Generally I would have stopped reading right there, but he also said that the guidelines work for the majority of his patients. I wanted to know about the minority and his opinion there.

Seeing as I know of thousands of chronic Lyme sufferers I’m going to have to say, “Sorry David, we aren’t that rare.” While it is hard for me to get over my bias of anything or anyone who says the IDSA got it right, I don’t think that Dr. Itkin is actually discrediting us or our illness. He isn’t the first person to say calling it Lyme disease isn’t accurate. Even chronic Lyme isn’t really telling the whole story.

How many infections do you have? How many imbalances? How many active viruses and bacteria unrelated to Lyme? Parasites, amoebas??? Lyme is only one piece of the illness we chronic sufferers are dealing with. Perhaps it was the catalyst, or the straw that broke the camels back but it isn’t our only problem, for many of us it isn’t even the most pressing problem.

It seems like Lyme is the common denominator, the thing that we all share, but after that our illnesses are all unique and vary greatly. Some of us suffer physical pain, some have more neurological symptoms. I have digestive problems, others have heart problems. In my personal case when it comes to treatment, actual Lyme disease has never been a major player. For me it has been Bartonella, viruses and bacteria unrelated to Lyme. Oh and I had those worms and amoebas to deal with too.

Dr Itkin says in his article; “I do believe that there is a true medical condition (or conditions) that we are currently unable to characterize…”

I can live with that. What I think he fails to acknowledge is that we call that condition, Chronic Lyme Disease. An accurate description or not, it has been given a name. Arguing semantics isn’t helping me or anyone else. Stop fighting about what it isn’t, we all know that it isn’t just Borrelia Burgdorferi.

There is a whole lot of Dr Itkin’s opinion that I don’t agree with. I give the patients a lot more credit than I feel he does. I don’t think that calling Lyme the carrot to the desperate is fair at all. My doctor’s were very upfront about the illness, the complications, and never once lead me to believe that I simply had Lyme and nothing else. In there opinion it is also an inaccurate name for the chronic illness I have.

My LLMD often talked about my autoimmune disorder more than Lyme disease. My current doctor is treating me because I am ill and we are working to build my immune system back up while attacking any bacteria, viruses or imbalance that arise.

I’m not very good when it comes to politics, but I don’t see how creating legislation to allow doctors to treat patients without fear of losing their medical license is a disservice to patients.

Dr Itkin fears that such legislation would lead to “cookie cutter” diagnosis and treatment. He says, “A compassionate provider may decide on a case-by-case basis that a patient deserves treatment that diverges from standard conventions. A law is not needed for this.”

I think he got that last part backwards. It appears that we do need a law to allow our providers to decide on a case-by-case basis that we need treatment that diverges from standard conventions. Without it we are in danger of only being allowed the IDSA “cookie cutter” diagnosis and treatment.

 

“Voices of Lyme Disease” radio program, hosted by Kim Christensen and Jeanne Marie Bain

Hi, this is your long lost Lymenaide constributor Kim! I apologize for my absence. I’ve been very busy blogging away on my own blog, Affairs of Living.  I’m working very hard on my cookbook of gluten-free, allergy-friendly, sugar-free recipes.  I’m working hard on healing from Lyme. I’m trying to maintain a social life. I’m growing a garden. I’m taking classes in Touch For Health, which I’m very excited about sharing with all of you.  In short, I’ve been a bit busy, and my blogging on Lymenaide has suffered!  Don’t think that I haven’t been doing my share of Lyme Awareness Month activism, however.  I’ve been talking about Lyme non-stop to anyone who’ll listen!

On Sunday, May 16 at 6 pm Central Standard Time, I will be hosting a live radio program with fellow fierce Lyme warrior Jeanne Marie Bain to help spread awareness.  We will hear stories from adults, teens, and kids who have been fighting for years to get the right diagnosis, and were surprised to learn that a little tick was responsible for all the chaos in their bodies. They will share insights, humor, and resources they’ve learned in their fight with Lyme disease and other Tick-borne infections.

If you live in Minneapolis, MN listen on 90.3 FM and in St.Paul, MN on 106.7 FM.  If you live anywhere else, you can stream it live online at http://www.kfai.org/through Windows Media Player or iTunes.  If you miss the live broadcast, the episode will be available online after the the broadcast for 2 weeks at http://www.kfai.org/waveproject.

I am honored and excited to have the opportunity to work with Jeanne on this broadcast, and am excited to be able to participate in sharing valuable and meaningful information through the forum of community sponsored radio.

If you have the time or the interest, please tune in and listen to the broadcast.  You may learn something new about Lyme Disease, you’ll hear meaningful personal stories, and you’ll get to hear my radio voice, which I’m told is very nice.  ; )

Voices of Lyme Disease

Live Radio Program with Kim Christensen and Jeanne Marie Bain

Sunday, May 16, 2010 at 6 pm CST on KFAI: Radio Without Boundaries

Minneapolis 90.3 FM   St. Paul  106.7 FM

Online Live Stream: http://www.kfai.org/

Download after the broadcast: http://www.kfai.org/waveproject

PS – I will also be on the radio June 19 – check out my Events page for all the info!

 

Cured by Lyme?

Friend or Foe

Lyme the great impersonator. It can get in to every cell in your body; brain, blood, organs. It can hide itself from the immune system. It can cause symptoms that mimic all sorts of other ailments. It can even effect the nervous system. Borrelia and it’s side kicks, Babsesia and Bartonella (among others), are on a mission to invade and conquer.

What if we could infiltrate their armies and take them down from within? Imagine harnessing their evil powers for good. Borrelia would be forced to rewire the nervous system instead of short circuiting it, and babesia to clean the blood instead of infecting it!

Sounds way too far fetched right? Well, maybe not.

Experiments have proven that bacteria can be manipulated and reprogrammed! Did you know that genetically modified strains of E. coli are being used to produce anti-malarial drugs? Scientists have genetically engineered a virus called M13 to mimic nerve tissue and promote re-growth. They envision using this “viral scaffolding” to help the paralyzed. Bioengineers envision a day in the not so distant future when microbes instead of causing disease, will be used to cure us of disease. (1)

Generally speaking, the idea of genetic modification scares the bejesus out of me. Most of my concerns stem from the fear of biological weapons and just plain old greed. Not to mention the theories and admissions that governments around the world have experimented with borrelia as a biological warfare agent.

There are two sides to every coin though. You cannot ignore the potential benefits of genetic modification. There is undoubtedly good to come from these biological advancements.

On the completely innocent side, is this story of Biological Engineering Students at MIT.

The students were stuck in a lab for hours waiting for E. coli to grow. B-o-r-i-n-g, and apparently, E. coli does not smell very good. It stinks, like poop. Tired of spending hours in a stinky lab, the students decided to remedy the situation by pulling the DNA out of a cell from a petunia plant and putting it into the E. coli cell. Instead of smelling like poop, the E. coli and the lab, now smelled like wintergreen!

This all makes me wonder about the possibilities for Lyme when it comes to the Western Fence Lizard. Have you heard about this fantastic creature? Something, entomologist suspect a protein, in the lizards blood kills the Lyme disease bacteria in the bellies of juvenile ticks! These ticks are no longer infected. They might still suck your blood, but they will not give you Lyme. (2)

How fantastic is that! I am all for harnessing the power of that protein, modify away! I think in the mean time, I might get a few as pets.

Western Fence Lizard

____________________________

SOURCES:
1. Kean, Sam. “The Quadrillion Bug Inside You” mental_floss Nov-Dec 2009, 39-41

2. Russell, Sabin. “Lizards Slow Lyme Disease in West” SFgate.com April 1998

The story of the students at MIT comes from an excellent podcast that also weighs the pros and cons, the fears and fantastics of messing with Mother Nature. It is called, (SO-CALLED) LIFE from WNYC radiolab.org

 

Seasonal Vaccination, Worth the Risk?

At my last support group meeting the subject of seasonal flu shots came up. Should we get them? And what about the Swine Flu vaccination?

Absolutely not, was the advice from my doctor, who is also the facilitator of the group. If you have Lyme your immune system is compromised. The last thing you should be doing is intentionally introducing viruses to your bodies.

Beyond that, the ingredients of the shots are horrifying, mercury is one of them! I had no idea, but I know my heavy metals are high, mercury being one of the worst.

A surprising number of stories were told by people in the group who attested to a vaccination being the trigger that pushed their illness to devastating levels.

This is a highly debated question especially at this time of year when the recommendation for the flu shot is promoted, encouraged and it is readily available. Many doctors including some LLMDs do recommend the flu shot.

So just what is in a regular flu shot? (1)

• Egg proteins: including avian contaminant viruses
• Gelatin: can cause allergic reactions and anaphylaxis are usually associated with sensitivity to egg or gelatin
• Polysorbate 80 (Tween80™): can cause severe allergic reactions, including anaphylaxis. Also associated with inferility in female mice.
• Formaldehyde: known carcinogen
• Triton X100: a strong detergent
• Sucrose: table sugar
• Resin: known to cause allergic reactions
• Gentamycin: an antibiotic
• Thimerosal: mercury is still in multidose flu shot vials

Most people are unaware that there is a controversy about vaccination.  They are unaware that there is another point of view about the benefits of vaccination.  They are unaware of the risks associated with this medical procedure. Where risk of injury or death is acknowledged, it is believed to be rare and inconsequential compared to the perceived benefits to individuals and society. (2)

With growing evidence that vaccinations may actually be causing chronic health problems and the attendant realization that the right to informed consent is being denied, a growing number of parents and concerned individuals are demanding that questions about safety and appropriateness be addressed. (2)

Read this letter -New York State Health Care Workers don’t want to be forced to get the flu shot

We do not want to receive these vaccines. Our educated studies of risks versus benefits conclude that the risks of the vaccine are greater than the possible benefits. You know us — you know we live by, “First, do no harm.” We have many times extended ourselves to you, but our research concludes these vaccinations are not a safe choice for us.

Watch this YouTube video -Doctor Admits Vaccine Is More Deadly Than Swine Flu Itself & Will Not Give It To His Kids

Obviously I am anti flu shot. The strains of flu included in the shot are only a guess as to what epidemiologists think will be the biggest flu viruses of the coming year. There are so many strains of flu, does potentially protecting yourself from those few really protect you from very much? I have only gotten a flu shot twice in my life. Both of those years I got horribly sick with the flu.

Whether or not you decide to get the shots is entirely up to you and should be discussed with your doctor as it pertains to you and  your personal health condition.

1. http://drtenpenny.com/the_truth_about_the_flu_Shot.aspx
2. http://www.know-vaccines.org/controversy.html

More on the subject-
“A Clinical Diagnosis, Really?” – By Kim Sampson
It’s Seasonal Flu Shot Season…but the Shot has Never Worked
Lymefriends.com forum- Lymies and the flu shot
18 Reasons Why You Should Not Vaccinate Your Children Against The Flu This Season

 

Lyme Rally in Canada

There is a lot of talk about activism on the Lyme boards lately. We should protest, we should rally, we should write a letter… Hopefully we will do something.

I have been watching the news from Canada lately where a current rally for better diagnostic tests is going on.

Canadian Lyme disease patients are calling for better doctor training and more accurate tests so sufferers can be diagnosed and treated quickly before their side effects become crippling and chronic.

At rallies across Canada this week, patients called for greater awareness of the disease within the medical community, and asked provincial governments to train doctors to recognize the disease.

read the full story -CTV.ca News

 

Be on the lookout for ticks COLORADO

While this article is fairly basic for seasoned lymies it is very important. More articles like this need to be published in local papers to make residents everywhere more aware of the prevalence of Lyme disease.

This particular article hits home with me as it is form Summit County Colorado and mentions Carbondale, CO. I lived in Colorado for 5 years. The last 2 years I was in Aspen which is right down the valley from Carbondale. I hope that all my friends there read the article and take precautions!

Follow the link to the article-

Be on the lookout for ticks

 

More Ticks in the News

Wow, great minds think alike. After my last post I was thinking that I should start putting together a letter to send into my own local paper to help spread the word about Lyme disease. I live in a high risk area and most people don’t even know that we have ticks that carry Lyme here!

I applaud the writer of the “Letter to the Editor” and encourage the rest of us to take similar steps toward local education.

Our local paper had an update about Lyme disease this week. The impression it left the reader with was that there is “nothing new here”, there will be a small number of new cases this year in Allegheny county (20-30 I think the article said) and generally not to worry. Considering that this same paper had some relatively comprehensive articles about Lyme disease, it ticked me off to see them waste space on something so uninformative rather than discussing tick safety education or talking about the real impact of Lyme disease on the region. I decided to write a letter to the editor of the paper…

Follow the link to the rest of the story-

A Lyme Disease Journal, “Letter to the Editor”

 

UOS wins top award at International Health Film Festival

Support this movie and support Lyme disease awareness. Visit the site to find out if “Under Our Skin” is coming to your town.

Upcoming Under Our Skin Screenings

UNDER OUR SKIN was just awarded “Best Feature Film-Silver Award” at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians…

UOS wins top award at International Health Film Festival

 

Food Prescription: 100% Non-GMO diet

The Lyme Induced Autism Foundation (LIA) has joined with other leading health organizations to call on medical practitioners to prescribe diets free from all genetically modified organisms (GMOs), and urged individuals, especially those with autism, Lyme disease, and associated conditions, to avoid eating genetically modified (GM) foods.

Follow the link for the whole story from examiner.com, San Francisco:

Food Prescription: The Lyme Induced Autism Foundation prescribes 100% Non-GMO diet

 

A summary of the IDSA Lyme evidence hearing

Overview of July 30th’s IDSA Guidelines review on the “Under Our Skin” blog.

The good, the bad and the hopeful…

• The Good- ILADS physicians were compelling
• The Bad- IDSA appears unmoved as evedenced by IDSA president Anne Gerson’s comments a few days after the hearing.
• The Hopeful- copies of “Under Our Skin” were requested by the IDSA for all 9 panelists.

Click here for: a summary of the IDSA Lyme evidence hearing

 

Lyme and Tick-Borne Diseases Bill needs our support

Federal Bill Information
Lyme and Tick-Borne Diseases Prevention,
Education and Research Act of 2009
U.S. House Bill HR 1179
Actions needed by individuals, organizations and businesses

There are links on the website to find your representative and how to contact them. The site also provides samples of what to say when you call and letters you can adjust to be addressed to your representatives and signed from you. (Check their spelling and grammar, I decided to write my own.)

It takes a little time but it is really important for all of us to get bills like this to pass

follow the link:
http://cwork.com/

 

Health Insurance Whistle-Blower Knows Where the Bodies Are Buried -Amy Goodman

Wendell Potter is the health insurance industry’s worst nightmare. He’s a whistle-blower. Potter, the former chief spokesperson for insurance giant CIGNA, recently testified before Congress, “I saw how they confuse their customers and dump the sick—all so they can satisfy their Wall Street investors.”

Follow the link to here the whole story:

http://www.democracynow.org/blog/2009/7/15/health_insurance_whistle_blower_knows_where_the_bodies_are_buried

 

Dr. Joe Jemsek “Speaks the Truth” Speech

Dr. Joe Jemsek discusses the controversy surrounding Lyme disease and what action needs to be taken to provide patients with better care.

http://www.youtube.com/user/TheJemsekClinic

 

Rell signs bill to protect doctors who treat Lyme disease

Gov. M. Jodi Rell announced Sunday that she has signed into law House Bill 6200, which allows physicians to prescribe long-term antibiotics in the treatment of persistent Lyme disease.

The bill, unanimously passed through both houses of the Connecticut General Assembly, allows doctors to go outside standard guidelines without fear of sanctions from state health regulators if the patient’s clinical diagnosis of the deer tick-borne disease and treatment have been documented by a licensed physician.

Follow the link for the whole story:
http://www.thehour.com/story/471445