Sunday, November 23, 2014

What's Happening in the Lyme World Lately?

Hope everyone had a Happy Thanksgiving!

Events That Took Place in November

November 4, 2014

Protest: Patient Emergence~Oregon Health Policy Board Meetings Coordinator: Deb Elder Where: OHSU Division of Infectious Diseases 3181 SW Sam Jackson Park Road L457 Portland OR 97239-3098 See Pictures and More Information Here

The Holiday Wishlist Starts!
Click Here for More Information!

Pain Summit Lyme Booth
Nov 14, 2014
Laurie Myers is setting up a Lyme booth at the Pain summit.
https://www.facebook.com/events/241713422691306/?pnref=story
Chandler Center for the Arts, 250 N Arizona Ave, Chandler, AZ, US

Sadly Those we Lost in November

Two huge advocates for Lyme Disease.

Dr Willy Burgdorfer Read Memorial Here

Leslie Feinberg Read Memorial Here

Please Support The Holiday Wishlist

If you are in need this holiday season, please stop by to add your wish to the list!

Click Here

If you are in a position to give, please purchase one of these shirts to help support the patients on the Holiday Wishlist.

Teleconferences and Radio Interviews for November

Lyme Ninja Radio Click Here to Listen to Recorded Shows

Lyme Thriving Teleconferences

Nov 3rd, 2014
Jenny Rush hosting. The topic is dealing with the process of returning to normal life after a prolonged illness. Recording of the call Facebook Event Page

Nov 20th, 2014Special guest Dr. Gary Gruber will be making a live video presentation on Lyme Disease and intestinal health.
Facebook Event Page

In the News

These following articles were all from November

Australians flock to overseas Lyme diseasetreatment

Yahoo!7 News

Australians flock to overseas Lyme diseasetreatment. Thousands of Australians are suffering from Lyme Disease and being diagnosed in overseas labs, despite the government insisting can’t be contracted here. Sunday Night: November 23, 2014, 6:30 pm.

Study highlights challenges of diagnosingLyme disease

Boston Globe

Burns’s experience, along with two other cases detailed in a paper published this week in JAMA Internal Medicine (a publication of the Journal of the American Medical Association), highlights the challenges — and dangers — of some Lyme disease …

Study: New Test For Finding Drugs To Fight Persistent Lyme Disease

WBUR

Potentially promising news on Lyme disease: Johns Hopkins researchers report a new, improved test for determining which drugs may work against Lyme diseasebacteria that persist even after antibiotic treatment. This enters the contentious realm of …

Elena Delle Donne has been public about her battle with Lyme disease.

ESPN

“It’s really special because Lyme disease has become part of my life now,” Delle Donne said in a phone interview. “I learned that I’ll wake up every day and deal with it. There are good days and bad days. If I can be a voice and reach out to people and …

Plymouth business owners team up to host talk on Lyme disease

Wilkes Barre Times-Leader

A film about Lyme disease titled “Under Our Skin” will be screened at 7 p.m. Thursday in the American Legion, 33 Center Ave. in Plymouth. Meaghan E. Bird, an infectious disease technologist with the Northeast Wildlife DNA Laboratory at East Stroudsburg …

Cuomo: ‘I want to sign the Lyme bill’

Poughkeepsie Journal

The Infectious Disease Society of America holds that 28 days of antibiotics are enough to kill the spirochete that causes Lyme disease. However, some advocates in the medical community and sufferers of Lyme disease have fought to change those …

AGNR Scientist Awarded Funding to Further Lyme Disease Research
Inside his state-of-the-art lab, Pal’s team grows Borrelia in test tubes, genetically modifies the pathogen, and uses it to infect ticks at different stages of development to figure out which components of the bacteria help it to survive

Families fight for long-term Lyme treatment

WCSH-TV

The Centers for Disease Control follows the Infectious Disease Society of Americaguidelines, which shows three weeks is enough time for the antibiotics to cure Lyme Disease. Using the same clinical data, InternationalLyme and Associated Diseases …

Study highlights challenges of diagnosingLyme disease

Boston Globe

John Burns wasn’t getting better. He was diagnosed with Lyme disease six years ago near his home in Albany, N.Y., using a federally approved test. While he was treated with several courses of antibiotics. Seven months later, he was still suffering from …

How to Protect Yourself from Tick Bites andLyme Disease

Health Hub from Cleveland Clinic

Hunters, hikers and others who spend time outdoors in wooded or bushy areas and meadows may be at risk for tick bites. And those bites can lead to Lyme disease. Ticks also like the

Willy Burgdorfer, Who Found Bacteria That Cause Lyme Disease, Is Dead at 89

New York Times

Willy Burgdorfer, a medical entomologist who in 1982 identified the cause of what had been a mysterious affliction, Lyme disease, died on Monday at a hospital in Hamilton, Mont. He was 89. The cause was complications of Parkinson’s disease, said Tom …

Wilhelm Burgdorfer, a leader in Lyme disease research, dies at 89

Washington Post

Wilhelm “Willy” Burgdorfer, a Swiss-born researcher who gained international recognition for discovering the bacteria that cause Lyme disease, died Nov. 17 in Hamilton, Mont. He was 89.

Study highlights challenges of diagnosingLyme disease

Boston Globe

Chem Trails

Many of you might have not heard of chem trails before. Like Lyme, there is much controversy about what they really are. The more I research the more it becomes really apparent that they are not good for us. Anything being sprayed into the air we breath cannot be a good thing.

Theories on the Reason For Chem Trails

1. Weather Modification
2. Pesticide Control
3. Mass Vaccinating
4. Human Depopulation

What Has Been Found In Air Samples

MycoplasmaFermetens Incognitus-

Pseudomonas fluorescens- which is a bacteria that causes upper respiratory illness and blood infections in humans.

Streptomyces- which are pathogens that cause infections in humans, such as mycetoma.

Black Yeast- a bioremediation organism which causes respiratory infections in humans.

Ethylene Dibromide (EDB)- a banned pesticide

Enterobacter cloacae- A rod-shaped bacterium that is oxidase-negative and catalase-positive.

Serratia marcescens- This causes upper respiratory infections resulting in pneumonia. This is the same chemical that was sprayed into the New York subway system in 1953, and over Dorset, England from early 1966 to 1971 by the military in both countries. It was then withdrawn as a biological warfare stimulant in the 1970s when this infectious agent was deemed too hazardous for use on friendly "test populations."

Enterobacteria- This can cause gastrointestinal illness.

Lithium- a mind altering drug
Metals-
Aluminum
Antimony
Arsenic
Barium
Cadmium
Chromium
Copper
Iron
Lead
Manganese
Nickel
Zinc

To See Chem Trail Forecast Map

To learn more and see chem trails videos click here.

To go to Wisconsin Chem Trails Click Here.

Other Factors in Chronc Illness

If you are chronically ill and looking for answers to why you can't seem to get better, please consider the following suggestions.

Chem Trails

Co Infections

Diet

Gene Mutations

Lyme Related Illnesses

Mold

Pesticides and Environmental Factors

Vaccines

Pesticides and Environmental Factors

Lyme, Morgellon’s, and Yes, I’m saying it again: Insecticides by PJ Langhoff

How antibiotic-resistant bugs are really created…

Potentially Harmful Pesticides Found In All Human Subjects Tested

12 Dangerous Pesticides

Monday, April 14, 2014

For people who have stopped treating Lyme:

There is a group of us, like myself, that don't "treat" Lyme anymore. We have just reached a place of acceptance, for various reasons to stop treating.

There comes a time and place for some of us who have been sick for a long time where you realize this disease may be lifelong. Treatment may make some of us better, while others, it makes us worse, and I'm not talking about the "herx" reaction, which I believe is an over used term.

I am talking about just being at a place of wanting "quality" of life and to live as functionally as possible. When I treat, I am bedridden. When I don't I am able to shower daily, go to the store if I need to and basically live life. Not to the degree I prefer but it's better then being bedridden.

I am not at an age where I feel it necessary to keep starting new protocals every six months. I don't feel I have that kind of time left. I just want to live happily whatever life there is left. Quality vs quantity.

If I saw a treatment that consistantly made people better, I'd jump on the bandwagon. The day that 100 people a day were leaving my Facebook wall because they were going back to work, is the day I'd start that treatment. But so far, I am not seeing that. In fact some of the people I see claiming to be "better" seem the sickest to me out of everyone. I don't know if it's what I call 'Lyme denial" or just their wishes are so strong to be better that they can't accept they are still ill. I believe our "cure" is still out there.

And im not saying treatments dont help anyone..some people definetly get helped..but for me, I didnt.. and this is what i choose to do. Live as functionally as I can. And man does that take the constant anxiety off of me. I don't have to try to make myself better, I don't have to worry about how I'm going to react to the next protocal I start. I don't have to worry about keeping up on the latest Lyme treatments or understanding the complexities of Lyme Disease. I can leave that in the hands of researchers, doctors and whoever else is smart enough to figure it out.

I do do some natural things, like juicing to try to boost my immune system. But other then that I think it's time to get back to living. For me.

I guess my way of fighting Lyme now, is through activism. We first need recognition so we can get some real research. Trying to end it for future generations. So when I do these protests or awareness events, Im not fighting for "treatment" necessarily...not the current treatments, Im fighting for recognition of this disease. Then I believe true research will be done.

For People Treating Lyme Disease

I have had a couple people say to me that they feel like failures because their treatments aren't helping them. I want to clarify something for these people.

*It is NOT your fault you are sick or that Lyme treatments suck.

* We are all guinea pigs right now, nothing is proven yet. You are paving the way for next generations to have better treatments.

* You are not alone, I see thousands of people a day not getting better, so don't put that responsibility or pressure on yourself, it is NOT you that is failing, it is the Lyme treatments and medical communites that are failing to give us proper treatment or to find a cure.

* You did not ask for this disease. It is just simply not your fault.

Thursday, March 6, 2014

Lyme or Not Lyme?

There is always a debate going on whether all these people who are sick, with Lyme, Fibromyalgia, Chronic Fatigue Syndrome, MS, Lupus, Alzheimers, Rheumatoid Arthritis and many more.....really have Lyme Disease or some other infectious agent, virus, contaminant or parasite?

Let's first admit most of these diseases have similar symptoms and similar epidemiology. None of these disease have accurate testing and most of us who are chronically ill with "invisible diseases" have been diagnosed with several of these. See Charts Below.

I guess what it always comes down to, and people always hate when I say this..is that we need more research.... to figure out what this crap is. What the name or it is, I dont care, Lyme Disease or whatever. The fact is there are millions of people who are sick and we need to help them and get this figured out for future generations so that they dont suffer.

On my other website, whatislyme.com, I am working on a Global Chronic Lyme map right now. And as Im adding patient stories on there, I realize it starts with a tick bite for many people. Many stories starts with...."when my son got bit"...or "when I got bit fifteen yaers ago"...so there has to be some connection to insects...beginning this "sickness"..

Im not sure about anyone else but i had a day where I was healthy and the next I was not..there was a line where something happened..and i was never again well. If it was soley environmental issues then I would think that would happen slowly over time.I do believe other factors like environment and our bad diets play into why we can't recover from being chronically ill however.

I believe there is combination of factors working here...Here is my theory:
1. Through our lifeteimes we are exposed to multiple chemicals, infectons, viruses and parasites, but our immune system has kept them at bay.

2. At some point we are exposed to Lyme Disease, through tick bites, sex or other means or insects. It lowers our immune system.

3. Antibiotics might work in some straight up cases or early infections, but most lyme cases go undetected long enough to treat early and what happens is it lowers our immune systems and all this other stuff we were exposed to comes out.. Our immune system can no longer fight off infections, viruses, parasites or detox things like mold exposure, metals and chemicals..

4. Our body organs and systems just break down. Our nerves are shot, our vaso vagal nerve no longer functoins properly, our adrenals are shot, we live in the "fight or flight" response.

5. What started out as Lyme, a bacterial infectoins has now turned to auto immune dysfunction and multi organ dysfunction.

6. We can do our best to heal, eat right, exercise lightly, be nice to ur bodies and do some immune boosting. We should live our lifes to the fullest and never give up, but our lives and functioning will never be the same again. The "cure" to this multi systemic dysfuntion is not found yet.

To sum it up, sometimes I wonder why I am doing activism. Lyme activism in particular. I feel like I know less now after studying this disease nonstop for the last 10 years, then I did when I started. There are rips within our own community, people taking sides, antibiotics or not antibiotics, natural or not natural treatments, do this, do that....The truth is, noone really knows the answers, if they did we would all be better. But the reasons I keep on are obvious. There are millions of sick people out there. We all have the same symptoms. We all are suffering without help from the medical community. We all are being abandoned by our friends and family because we have a disease that noone understands. We need to stick together until this thing is figures out. Lyme is an umbrella term for whatever illness is that we have. We need more research, unbiased research.

Epidemiology Chart