Fighting the US medical bureaucracy for action on a deadly disease

Operation MaydayOperation Mayday. Why are these folks ticked off?  Most of us vaguely understand that our lives can be completely changed, without warning, at any time. We don’t think about it, but we know it could happen someday.

I don’t think any of us have any foreshadowing clue or warning that every single thing in our lives – our health, friendships, activities, income, diets, family relations can change from something most of us believe to be a benign annoyance. Something that can be as tiny as the period at the end of this sentence.  But it can. And it does. And it kills – slowly and painfully. All from a tiny bite from a common little tick.

I grew up outdoors. Ticks were a common thing to find. We pulled them off of our dogs, cats, horses and sometimes ourselves. We had heard about Rocky Mountain Spotted Fever and Lyme disease, but that wasn’t anywhere near us. We considered ticks nuisances and squashed them. Done. No worries. How naive…

Lyme disease was first reported in the United States in the town of Old Lyme, Connecticut, in 1975. Seemingly from nowhere, dozens became ill with arthritic symptoms. It was then traced back to bites from ticks.  Many believe that Lyme disease was actually created by the US government on Plum Island, located a mere 10 miles from Lyme, Connecticut.

Operation Mayday
Plum Island

Why? First, because Plum Island is close. A lab created biological pathogen on a tiny creature could easily hitch a ride off the island on a human, bird, or rodent. Second, Plum Island is the workplace of former Nazi, Erich Traub. Traub worked directly under Hitler. He was brought to the U.S. during Project: Paperclip (the ex-filtration of approximately 2,000 Nazis out of Germany by OSS and CIA directors for service to American intelligence and industries).

Under Hitler, Mr. Traubs was a top biological weapons industry director. His expertise? Infecting ticks and mosquitoes with biological germs. Is this true? I don’t know. Regardless of its origin, it has caused debilitation, intense suffering, and death. Lyme disease is caused by the bacterium Borrelia burgdorferi (aka Lyme Disease).

This is not an uncommon bacteria for the average person to have in their body, doing no harm. In fact, scientists have found that the famous “Ice Man” had this bacteria in his body. However, this new form of Lyme is acting differently. And the ticks are transmitting other bacteria and co-infections along with Lyme. This complicates things.

First found only in deer ticks, here’s basically how one gets Lyme disease: Ticks feed on blood. They aren’t picky – any mammal blood will do. But while they have their heads buried into their host’s skin, they very often spit back a little. So an infected tick gives the mammal the diseases it’s carrying. Then another tick has lunch from the now infected first host, and passes it on to it’s next host.

If you are fed on by an infected tick, your odds of getting Lyme and probably some of it’s nasty coinfection buddies as well are fairly high. Lyme – borrelia burgdorferi – is one of only 6 known bacteria that is shaped like a corkscrew. It is also one of the very few bacteria that can pass the blood/brain barrier – and also pass through the placenta during pregnancy.

Another bacteria with these attributes that nearly everyone is educated about is syphilis, which is transmitted sexually. It has now been found that Lyme can also be transmitted sexually. Lyme can burrow itself into any part of the body: blood, tissues, bone, brain. Anywhere.

All of this makes ticks much, much more than a simple nuisance that you just pull off and forget about. Oh, by the way, they’ve now found that mosquitoes, gnats and fleas are also carriers of Lyme.

Operation MaydayThere are 3 stages of Lyme disease. Stage 1 is called early localized Lyme disease. The infection has not yet spread throughout the body. Symptoms of early localized Lyme disease begin days or weeks after infection. They are similar to the flu and may include:   Chills, Fever, General ill feeling, Headache, Joint pain, Muscle pain, and stiff neck. There may be a “bull’s eye” rash, a flat or slightly raised red spot at the site of the tick bite. Often there is a clear area in the center. It can be large and expanding in size. This rash is called erythema migrans. Without treatment, it can last 4 weeks or longer.

Stage 2 is called early disseminated Lyme disease. The bacteria have begun to spread throughout the body. Symptoms of early disseminated Lyme disease may occur weeks to months after the tick bite, and may include numbness or pain in the nerve area. Paralysis or weakness in the muscles of the face. Heart problems, such as skipped heartbeats (palpitations), chest pain, or shortness of breath.

Stage 3 is called late disseminated Lyme disease. The bacteria has spread throughout the body. Symptoms of late disseminated Lyme disease can occur months or years after the infection. The most common symptoms are muscle and joint pain. Other symptoms may include abnormal muscle movement/spasms, joint swelling, muscle weakness, anxiety, light sensitivity and/or vision disturbances. Numbness and tingling, speech problems, depression, etc.

So, now that you have a baseline understanding of Lyme disease, let’s go back to the original question: why are all of these people ticked off?  The current CDC guidelines say that a 30 day treatment of antibiotics will cure Lyme disease. The CDC and IDSA both contend that long term antibiotic treatment is not necessary.

They also do not recognize Chronic/Late Stage Lyme. The testing that is currently used: the ELISA test and the Western Blot test have been found to be 50% accurate at best, and do not test for all of the strands of Lyme or its co-infections. Doctors that have researched, confirmed, and treat Chronic Lyme, or that prescribe long term antibiotics in order to truly cure their patients, face losing their medical practices.

However, they are perfectly OK with doctors prescribing a year’s worth of antibiotics for acne. Patients are going without treatment, travelling hundreds of miles and paying directly to see Lyme Literate doctors, and many, sadly, are dying. Operation Mayday is out to change that.

May has become Lyme Awareness Month. Each May, Lyme advocates gather in Arlington, Virginia to protest and educate. Operation Mayday has a clearly stated its mission. (Read full plan at http://www.themaydayproject.org/). This year, The Mayday Project as well as Lyme patients plan to storm the IDSA with every ounce of strength we can muster….

We are going to tackle them from every imaginable angle. Their building will be surrounded with Lyme patients, billboard trucks and supporters for two days. Over the next two days we will flood their phones, emails, fax machines, and social media sites with truth. An evidence based document providing a concrete case for chronic Lyme disease, the likes of which has yet to be presented to them.

We are demanding they overturn the incorrect guidelines that are causing suffering and even death  to hundreds of thousands. The changing of the guidelines and the acceptance of Chronic Lyme is our goal on these two days. We are demanding better treatment, research, and a cure.

The whole world will be watching as we take this entire event to the internet via live stream.  As promised, yesterday, Lyme advocates were out in full force at IDSA headquarters. The IDSA allowed one person to enter. Josh Cutler entered the building, presented the documents, and the IDSA representatives then walked away. The IDSA staff did not speak to him. Not one word.  When contacted for comment, the PR Firm for the IDSA gave the following statement:

“IDSA remains deeply sympathetic to patients who experience pain that they attribute to Lyme disease and who are in need of appropriate medical attention and care. However, in the absence of evidence to indicate that patients’ symptoms are caused by persistent infection with Borrelia burgdorferi, we cannot recommend extended antibiotic therapy. While scientific evidence is constantly evolving, data currently indicates that such therapy is unsafe and ineffective. We remain open to new evidence and support the need for more research about Lyme disease, including its prevention, diagnosis, treatment and long-term effects.”  

Meanwhile, protesting will continue today, and more will suffer and die needlessly.

Kalyn Powell has spent her life wearing many hats: mother, volunteer and involvement with many non profit organizations and Charitable Foundations, teaching many children, telecom engineering, business development, foster care to high risk children, corporate and non profit marketing, and much more. She is now retired from the hustle & bustle world, and spends her time on the Gulf Coast of Texas breathing in the sea air, doting on her family, ministering, creating mixed media art, enjoying finding beauty in whatever form it takes and bringing awareness to the issues affecting our lives & our world through writing.

7 COMMENTS

  1. Thanks to all who have helped share this info. Please keep sharing! We will have a follow up on the second day happenings coming out after the holiday weekend when we can include any new statements from the IDSA.

  2. Get this – Plum Island facility is for sale and the relocation spot of choice is Kansas. Yes, Kansas- smack dab in the center of the country where the wwind constantly blows and tornadoes pick up and move things for miles and miles. I don’t like this idea one bit!

  3. My son majored in forestry in college and got Lyme disease in 2012. He didn’t catch it in time or take any antibiotics and it was six months of hell for him. He has made a full recovery but he couldn’t even brush his teeth or walk and actually thought he had Lou Gherig’ disease or something that life threatening. Luckily, when he finally went to the doctor, he received the correct diagnosis, antibiotics and anti-inflammatories and time off of work. He pushed himself to go to classes when September but the doctor did tell him that early detection helps. Thanks for this story! It was very informative and easy to read.

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