Archive for the ‘Activism’ Category

Military Veterans, Suicide, and LymeMSIDS

https://www.lymedisease.org/military-lyme-mld/

Ruben Lee Sims is a vet who has struggled with Lyme/MSIDS for over 3 decades, with most of that time being misdiagnosed.  He was punished under the Uniform Code of Military Justice with two Article 15s and nearly court martialed twice, because doctors said no disease caused all of those symptoms. Secured in psychiatric wards three times as a hopeless hypochondriac, he was told he would stay on the psychiatric ward until he got better.

After congressional investigation, he was finally discharged from the Air Force after 14 years of highly recognized and awarded military service that ended in shame because doctors did not understand Lyme disease.  Attorneys laughed and joked as they decided he was no longer fit for duty and discharged him from the Air Force without benefits, pay, or health insurance. He was essentially dumped on the streets homeless, disabled, and unable to work, with a wife and a child to provide for.

Three decades later, the VA still cannot diagnose Lyme disease based upon symptoms. Sims learned about Lyme Disease from a May 2015 Costco magazine article.  He learned that the rash he had that started three decades ago was the Acrodermatitis Chronica Atrophicans (ACA) rash that is caused by untreated Lyme disease.

It took six months of constant confrontation with the VA to get them to bring in someone that understood Lyme disease. Sims is seronegative by ELISA and Western Blot. So, doctors’ over reliance on serology test nearly left him blind from severe sensitivity to light. The ACA rash confirmed his Lyme disease 34 years after my infection.

The VA did not recognize Lyme disease until the mid-1990s. That means that veterans who had Lyme disease before then were misdiagnosed and some are perhaps homeless and disabled. According to Sims the government is no wiser today than before they recognized Lyme disease. Veterans are still being misdiagnosed and perhaps dying of other Lyme-related diseases.

https://www.lymedisease.org/vet-suicide-lyme/  In this link, Sims wrote a letter to David Riley, National Commander of the DAV. He states that the problem is NOT about getting “timely and effective mental health services,” as these attempts have failed miserably. The rate of veteran suicides has remained nearly constant for over a decade in spite of VA mental health efforts.

The real problem is: military and VA healthcare systems follow CDC two-tier tests Lyme disease guidelines that capture less than 10% of Lyme disease cases nationwide. Over 90% of Lyme disease cases are diagnosed and treated by a minority of doctors who specialize in Lyme disease and tick-borne disease and understand CDC guidelines are fatally flawed.

He also states that according to many medical experts, the largest cause of death from Lyme disease is suicide.  Read about Psychiatric Symptoms of Lyme/MSIDS here: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

Sims states that troops are exposed to tick bites worldwide in training and in the fields. Military risk assessments often find high risk of Lyme disease at installations all around this country. Yet, the ability to diagnose and treat Lyme disease is nearly nonexistent in the military and VA healthcare systems.

Veterans with Lyme disease find themselves caught up in a devastating perpetual loop of misdiagnoses, failed treatments, and constant rejection that can only be resolved by proper diagnosis and treatment of Lyme disease. Lyme disease affects both the mind and body. However, mental health alone cannot cure Lyme disease.

Sims says nothing will change about suicides in veterans until the CDC Lyme disease guidelines are addressed immediately.

Vaccines Revealed #2 Vaccine Epidemic

http://www.vaccinesrevealed.com/free/?inf_contact_key=570c9b5eef88955be586ca11e9fa44abbc6a0d0d7125a2c6b3a1d0ab0bf09f26  Register here for free viewing.

Vaccines Revealed Episode 2

Suzanne Humphries once pro-vaccine, speaks out about the downsides of vaccines. Humphries has had the chance to study completely unvaccinated children and was amazed at how healthy they were compared to vaccinated children. While they got chicken pox, and some other illnesses, overall, they were much more healthy than vaccinated children.

5:20 First you have to extract a disease from an animal and then pass it through animal or human cells to lessen the disease and then they multiply it. The multipliers are made with cells that are tumoragenic (so they multiply quickly). This stuff ends up in the vaccine causing diseases – such as tumors.

8:30 Formaldehyde and mercury are still in some vaccines. Humphries feels people that want them should be able to have them but that those who don’t want them should have that right.
9: Immunity from vaccines doesn’t last as long as natural immunity. Vaccinated women do not pass on the immunity to their children if vaccinated.
11:15 – Children are getting the chicken pox vaccine (a fairly benign disease) and the result of that is people are getting shingles in later age.
12:25 There is nothing in vaccines that promotes health. It is not holistic nor does it fortify us.
13:10 Mortality for Measles, whooping cough, down 100 percent before vaccinations. Vitamin D, fermented foods, hand washing and other simple things are to attribute with good health.
15:00 Concerned about the one-side publicity vaccinations get – the science isn’t there. Studies don’t follow people long enough.
17:25 Studies show about a 13% success rate in the flu vaccine when exact strains are taken into account.
18:08 study in 2012 (Cowling) used a true placebo, which is rarely done, vaccinating half the people with the vaccine and half with the placebo. There was no difference in contraction of influenza. The vaccinated group had 5-6 times higher rate of non-influenza viral illnesses.
27:19 Humphries explains she was a respected nephrologist who was never questioned when she discontinued a drug that caused a reaction in a patient. When she questioned vaccine science the S hit the fan. Now, any medical professional that questions vaccines is shunned and considered a quack.
34:50 Sayer Ji shares his experience of growing up as a Vaccine Injured child. There’s hardly a family out there that isn’t affected by vaccine injury or autism. – Maybe they don’t even know the issues they are having is connected to vaccines.
59:00 Autoimmune issues that develop years after a vaccine are hard to track to a vaccine. If you connect the dots to vaccines you are called a “Conspiracy Theorist.”
59:47 In Houston a child was taken against the mother’s wishes and vaccinated.

Sayer Ji runs Green Med Info which is collating research on diseases and vaccines. http://www.greenmedinfo.com/membership
http://www.greenmedinfo.com/gmi-blogs  Articles for free.
http://www.greenmedinfo.com/blog/new-vaccines-still-cause-autism-and-our-government-knows   Great article about vaccines and autism.

1:00:25 Mary Holland, Esq. Professor, NYU. Her personal agenda is laws and policies on vaccinations. She writes about the Constitutional aspects of vaccines. She co-edited a book called “Vaccine Epidemic.”
1:03:10 Holland rejects the terms “Pro vaccine” and “anti vaccine.” No one is pro doctor or anti doctor. No one is pro aspirin or anti aspirin. No one would ever frame a dialog like that. But a movement began in the 50’s to eradicate every disease. It is a one-sized fits all approach. Scientific evidence does NOT show vaccines are safe and effective for everyone. The law considers vaccines unavoidably unsafe just like all pharmaceuticals.
1:04:34 The pharmaceutical business is driving this simplistic argument. The government at the federal and state levels, and the medical establishment are all complicit in this as well. All benefit financially. The media is also a player as their advertising dollars come from pharmaceutical companies. Non profits like the Bill and Melissa Gates Foundation aggressively support public health initiatives which include vaccinations.
1:06:50 Government in 1986 decided vaccines were so critical to the interest of public health that they gave nearly blanket liability protection to doctors and pharmaceutical companies. Individuals cannot sue. So the government is complicit in all of this. If you are injured by a vaccine you have to go to the government in Washington D.C. Doctors and pharmaceutical companies don’t have to care about anything. They aren’t liable. This has distorted all dialog on vaccines.
1:10:01 Science on vaccine safety is extremely poor. Congress needs to repeal the 1986 statute for the dialog to go anywhere. Holland feels this will be brought up this fall. The Vaccine market is a 30 billion dollar a year industry and is extremely profitable.
1:12:00 The government is recommending 70 doses of 16 vaccines for children under 18. There’s no science showing safety and is irresponsible.
1:13:20 There is a process individual vaccines go through, but the totality of the circumstances a typical test and law has never been evaluated. In fact a monkey study was not supportive that the vaccine schedule is safe and effective. The monkeys revealed autistic symptoms.

There’s a contradiction. If vaccines are so safe and effective why do doctors and pharmaceutical companies get blanket liability?

1:15:30 Common for the vaccine federal advisory committee to have conflicts of interest. Many receive fees from pharma. A study done 10 years ago has revealed severe conflicts of interest. Some own stock in vaccines. There should be stringent laws against this. The head of the CDC for instance became the director of the vaccine division at Merck. She made all sorts of decisions about vaccines in the CDC. There is only 1 seat on the committee from the public at large. 

Free Viewing of the Award Winning Documentary “Under Our Skin” in May

In May for Lyme Awareness Month, the Madison Lyme Support Group is showing Under Our Skin to educate others about Lyme Disease and Tick Borne Illness.

A gripping tale of microbes, medicine, and money, it exposes the hidden story of Lyme disease, one of the most controversial and fastest growing epidemics of our time.

When:  Saturday, May 6 at 2pm

Where:  East Madison Police Station, 809 South Thompson Drive, Madison, WI

Why:  To learn about Lyme Disease and other tick borne illness. Q & A will follow.

Parking:  Please refer to map  east-dist-parking-visitor-parking.  No parking allowed in red areas.  You may park in the dotted yellow areas, in-between the light poles and in the last row under the red, as well as on the road leading up to the station.

Moderators

Mike Nickel watched his healthy son become wheelchair bound with LD. After going through the frustrating process of trying to get him a diagnosis and proper treatment, he founded the Wisconsin Lyme On-line Support Group to help others in 2012. https://groups.yahoo.com/neo/groups/Wisconsin-LymeSupport/info.  He is also a founder and past president of the Wisconsin Lyme Network. http://www.wisconsinlymenetwork.org/.

Alicia Cashman first found out her dog had LD, followed by her husband, and then she came down with full-blown symptoms and a diagnosis. She started running the Madison Lyme Support Group when its predecessor stepped down in 2014. https://madisonarealymesupportgroup.com She is also a member of the Lyme Disease Association https://www.lymediseaseassociation.org, and is on the Tick IPM Working Group. https://tickipmwg.wordpress.com.

Come learn about the #1 Vector Borne Illness in the U.S. nearing 400,000 new cases a year with Wisconsin ranked 6th in the nation. You can get this in your back yard.

http://

Please copy and distribute the flyer:  UOS Flyer *

MyLymeData to Present Results

My mom used to always say, “If you want something done right, do it yourself.”

That’s exactly what MyLymeData is all about. It uses big data research tools which allow patients to quickly and privately pool their experiences to determine which treatments work best. The project can accelerate research into the disease, by helping scientists identify the most promising areas to investigate.

“Up until now, studies of people with Lyme disease were few and far between,” according to Lorraine Johnson, CEO of LymeDisease.org, sponsor of the MyLymeData project. “The largest one funded by the National Institutes of Health enrolled 129 patients—more than 15 years ago.”

https://www.lymedisease.org/mylymedata-so-important/  Go to this link to hear Johnson present statistics about the abysmal lack of research on Lyme/MSIDS. (1 minute long)

A patient education conference called MyLymeData2017: Overcoming Lyme Disease will be held April 8 in San Ramon, California, and will present the results from the first national large-scale longitudinal study of patients with Lyme disease ever conducted, and will also include the following presentations: 

Lorraine Johnson, CEO of LymeDisease.org. “Latest Results from MyLymeData”

Ray Stricker, MD. “Designer Drugs for Lyme Disease: The New Pharma Frontier?”

Christine Green, MD, “How to Combat Stealth Pathogens Like Lyme & Co-infections”

Raj Patel, MD, “Treating Mold Illness in the Context of Lyme Disease”

Jennifer Sugden, ND, “Pediatric Lyme Disease”

The event will be held at the San Ramon Community Center, 12501 Alcosta Blvd., in San Ramon, from 1-5 pm on April 8. Pre-registration is $35. Admission at the door is $40.

Register here:  http://events.r20.constantcontact.com/register/event?llr=xsuluhcab&oeidk=a07edsnvpa3f512a2be

More than 7000 patients have enrolled since MyLymeData began in November 2015. This puts it in the top 10% of patient-powered big data registries in the nation. Recruitment for the project is on-going.

https://www.lymedisease.org/mylymedata/  Please have your voice heard and be a part of this project that is revolutionizing research done on Tick Borne Illness.

TBI’s On the Rise

http://www.npr.org/sections/goatsandsoda/2017/03/11/519518318/beyond-lyme-new-tick-borne-diseases-on-the-rise-in-u-s?sc=17&f=1001&utm_source=iosnewsapp&utm_medium=Email&utm_campaign=app

The link above has the story of Tucker Lane who developed a pounding headache, tremors, high fever with profuse sweating, projectile vomiting, and double vision after finding attached ticks on his hip.

Doctors accused him of drug abuse….. (again, you can’t make this stuff up)

Thankfully the doctors were proven wrong after brain scans showed his brain was swelling.  Within 48 hours he was in a coma.  

An MRI showed inflammation deep inside his brain.  

Tucker’s mom, Lynn Cash, knew it was caused by the ticks.

Tucker was in a coma for an entire week until one day he turned his head to look at his mom when she came to visit.

What caused this severe illness?  Powassan Virus.  

https://madisonarealymesupportgroup.com/2016/02/21/powassan-virus/, https://madisonarealymesupportgroup.com/2016/08/31/wi-coppe-lab-in-the-news/

  Approx 1 hour: Published on Jun 6, 2016
Dr. David Baewer, MD, PhD, presents information about the relation of Powassan & other arboviruses to MSIDS (multi systemic infectious disease syndrome – or Lyme with friends) to the Madison Area Lyme Support Group

Tucker is one of the fortunate ones and his recovery stunned doctors.

Lyn Snow, age 73, didn’t fare as well.  She became incoherent and began talking to paintings after a tick bite.  Within a week she was in the ICU, on a ventilator, and completely unresponsive.  Lyn didn’t make it.

The NPR article shows maps of reported cases of various TBI’s in the U.S.  Please, don’t be fooled, these maps show a fraction of the true infection rate.  Many patients do not meet the CDC criteria to be in the range to be reported, and the testing for all of these infections is abysmal, only picking up a small amount of those truly infected.  Which means it’s much, much worse than what’s being reported.