The American Flag, The American Anthem and American Statistics for Military Service and First Responders

FlagOverGorundZero

Ten United States flags float gracefully over Ground Zero as a sky-diving team honored the victims of the September 11, 2001 terrorist attacks in a unique display”.

 

THE AMERICAN FLAG

“The colors of the pales (the vertical stripes) are those used in the flag of the United States of America; White signifies purity and innocence, Red, hardiness & valor, and Blue, the color of the Chief (the broad band above the stripes) signifies vigilance, perseverance & justice.”

I have my own law—Public Law 829, “The Flag Code” – which definitely states my correct use and display for all occasions and situations.

I have my special day, Flag Day. June 14 is set aside to honor my birth.

 

PLEDGE OF ALLEGIANCE AND NATIONAL ANTHEM

When reciting the Pledge of Allegiance, all present should stand at attention facing the flag with their right hand over their heart, with the exception of those in uniform who shall salute.

The National Defense Authorization Act of 2008 contained an amendment to allow un-uniformed service members, military retirees, and veterans to render a hand salute during the hoisting, lowering, or passing of the U.S. flag.

A later amendment further authorized hand-salutes during the national anthem by veterans and out-of-uniform military personnel. This was included in the Defense Authorization Act of 2009, which President Bush signed on Oct. 14, 2008. Public Law 113-66, enacted on 26 December 2013, reaffirmed this authorization.

  • When the national anthem is played or sung :Designation: The composition consisting of the words and music known as the Star-Spangled Banner is the national anthem.

Conduct During Playing: During a rendition of the national anthem:

  • When the flag is displayed:

individuals in uniform should give the military salute at the first note of the anthem and maintain that position until the last note; members of the Armed Forces and veterans who are present but not in uniform may render the military salute in the manner provided for individuals in uniform; and all other persons present should face the flag and stand at attention with their right hand over the heart, and men not in uniform, if applicable, should remove their headdress with their right hand and hold it at the left shoulder, the hand being over the heart; and when the flag is not displayed, all present should face toward the music and act in the same manner they would if the flag were displayed.

Prior to Flag Day, June 14, 1923, neither the federal government nor the states had official guidelines governing the display of the United States’ flag. On that date, the National Flag Code was constructed by representatives of over 68 organizations, under the auspices of the National Americanism Commission of the American Legion. The code drafted by that conference was printed by the national organization of the American Legion and given nationwide distribution. On June 22, 1942, the Code became Public Law 77-623; chapter 435. Little had changed in the code since the Flag Day 1923 Conference.

A Perspective of those who have fought and given their All for Our Country.

  • Approximately 57 million people have served since the birth of America
  • America has 21.8 Million Veterans alive today
  • Total Active      1,429,995
  • Army National Guard         342,000
  • US Army Reserve         198,000
  • USMC Forces Reserve 38,900
  • Personal Security contractors range from 42,412+
  • Since the civil War, approximately 685,208 people have died fighting for the freedom of America.
  • IN HONOR OF THOSE MEMBERS OF THE CENTRAL INTELLIGENCE AGENCY WHO GAVE THEIR LIVES IN THE SERVICE OF THEIR COUNTRY- 125 Stars as of  2017
  • Approximately Disabled “Service-Connected Disabilities” 3.8 million+
  • On 9/11- 343 firefighters died instantly when the Twin Towers collapsed on September 11 2001, along with 60 police officers and eight paramedics.
  • The FDNY’s chief medical officer, Dr. David Prezant, said over 2,100 firefighters and EMS personnel have retired on disability with World Trade Center-related illnesses, mostly lung disease and cancer, since 9/11.
  • More than 7,000 FDNY Firefighters and EMTs have been treated for a 9/11 injury or illness now almost 14 years later.
  • 5,400 members have been diagnosed with lower respiratory diseases such as asthma, chronic bronchitis, and less commonly emphysema, COPD, sarcoidosis or pulmonary fibrosis.
  • 5,200 members have been diagnosed with upper respiratory diseases such as chronic rhinosinusitis and/or vocal cord diseases.
  • 5,400 members have been diagnosed with gastroesophageal reflux disorders.
  • 1,100 have developed a cancer caused by 9/11 toxins. Of those, 44 have died despite access to treatment.
  • 135 police officers died in the line of duty in 2016, NLEOMF says. That’s 10 percent more than died last year, and the largest tally since 2011, when 177 officers died
  • In 2017, As of June 30, such deaths were up 30 percent versus the same period in 2016.

WWII, Korean War, Vietnam War, Cold War, Iraq & Other Conflicts-Total Missing 82,465

 Women make up 18% of the Navy and 14% of the Army. Racial and ethnic minority groups made up 40% of Defense Department active-duty military as of 2015.

  • Central Intelligence Agency/Number of employees 21,575
    DIA currently it has approximately 17,000 employees, two-thirds of whom are civilians and approximately 50% of whom work at more than 141 overseas locations.
  • NSA Employs less than 100,000

 

  • As of 2014, there were 1,134,400 firefighters in the United States
  • state and local law enforcement agencies employed more than 1.1 million people on a full-time basis, including about 765,000 sworn personnel (defined as those with general arrest powers). Agencies also employed approximately 100,000 part-time employees, including 44,000 sworn officers.
  • there are 17,985 U.S. police agencies. But that includes everything from college campus patrols, to sheriffs, to local police, to federal agents.

For all of those Active Duty, Veterans, First Responders and Intelligence, there are relatives- husbands, fathers, wives, mothers, children, siblings, relatives and friends who have faced great challenges. These people and their families that have been forged by adversity through the Warfare and Intelligence communities in protecting our great Country understand the meaning of our Flag and National Anthem. For every person that served, there is at least 1 if not 10 people affected by their service.

We are a proud 150+ million strong that have served and supported those that have fought for the freedom of of our Flag, which is a symbol of our Country, The United States of America.

 

Julia Hugo Rachel

Very Lucky Girl on Valcyte

 

 

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The Three Ring Circus and The Opioid Crisis

 

ThreeRing Circus

As the Circus Continues, millions of patients suffer, disabilities skyrocket, Good Doctors stop practicing medicine and patients turn to suicide – all directly due to lack of adequate medical care. This is inhumane“.

 

A week ago, several Doctors informed me of relatively bad news. Having been with the same set of Doctors for decades, I needed to find new medical care when I relocated. Little did I know, the rude awakening I would encounter and my surprise at The Three Ring Circus rearing its’ ugly head in the specialties of rheumatology. I had seen this Circus amongst the CFS/CFIDS and GWI arenas. However, admittedly, I was shocked to see the same circus show up in ironclad renowned medical specialties.

They stated -“you are very young for this, you’ve over used your body athletically, stressed your body too fast after traumas, your joints are giving out, you have REALLY bad arthritis, we are worried”.  I honestly had to tense up and stop myself from rolling my eyes into the back of my head. “Wow”, I answered with widened eyes and a straight face, as if I did not already know this. I’ve been living with genetic arthritis for decades and have had excellent and informative rheumatologist care.

They then proceeded to tell me exactly what I needed to do to increase my chance of a positive outcome. I left their medical office knowing that the advice they gave me was the complete opposite of what I needed to move forward in a positive, healthy and healing manner for myself. They also had me do a few physical maneuvers in the office that left me unable to move my head to the right nor walk for a week.

What they did not know or understand-is that everything they suggested had already been tried on me and failed miserably- ending up with hospitalizations and long bouts of bedridden months. Their recommendations would ruin any chance of a quality of life for me-forever. Their advice and opinions would have been detrimental for me had I followed them.

I have had arthritis since my mid 20’s. These Doctors did not even take the time to read the file they requested detailing two decade’s worth of testing and trial medications. Vast expenses and time were expended under the care of my previous rheumatologist, only to find out that the medications were ineffective for my types of arthritis or they had life threatening side effects. They were not interested in hearing I was once immobile or that I had lost 85% use of my hands at an early age. Nor were they interested in reading the notes about the 15 years of painful trial and error medications that eventually and thankfully led to a recipe of a successful Biologic plus one other medication that brought back 75% use of my hands and allowed a quality of life entailing mobility, work, raising a family and athleticism.

What they were doing was diligently following a  list that has been passed down by the CDC, Federal and State Laws, FDA and DEA. Although all of these entities strongly deny that they are influencing Rheumatologists, Oncologists and other professional medical specialists in a mandatory manner to reduce or refuse to write valid opioid prescriptions- they are. This medical situation is the perfect storm of stupidity.

When I walked into that doctors’ office, I was not seen as a patient- I was seen as “a check list”. How risky is she? She has 7 autoimmune diseases- plus an infectious disease doctor. Too much trouble, too complicated of a case  and they also charged me $1100 over 3 visits.

It is interesting to see the CDC submit guidelines on their website for chronic and critical illnesses such as Arthritis, Lupus and Cancer Care in the same exact way they executed guidelines for CFIDS/ME and GWI patients. They are using the Three Ring Circus Act again. Mandating Guidelines such as;

CBT (Cognitive Behavioral Therapy) which the CDC says “trains patients in behavioral techniques and helps patients modify situational factors and cognitive processes that exacerbate pain”.

Exercise Therapy which CDC says “can help reduce pain and improve function in chronic low back pain, improve function and reduce pain in osteoarthritis of the knee and hip, and improve well-being”.

Multimodal and multidisciplinary therapies as defined by CDC “therapies that combine exercise and related therapies with psychologically based approaches. Pharmacologic approaches used for pain include analgesics such as acetaminophen, NSAIDs, and cyclooxygenase 2 (COX-2) inhibitors; selected anticonvulsants; and selected antidepressants (particularly tricyclics and serotonin and norepinephrine reuptake inhibitors [SNRIs]). NSAIDs and COX-2 inhibitors do have risks, including gastrointestinal bleeding or perforation as well as renal and cardiovascular risks”.

The Three Ring Circus is (1) CBT, (2) Exercise Therapy and (3) Psych meds combined with NSAIDS. Sound Familiar? These are the same approaches used for CFS, GWI and a host of other waste basket diseases.

Now the CDC has targeted 100 Million patients with Arthritis, Lupus, MS, Cancer and other serious diseases with the same Circus Game. At some point, smart people have to ask Why? Who gains from this Circus and Why? Most of the time it stems from a host of issues such as ineptitude, power, politics, money, bureaucracy, poor legislation, unintended consequences from trying to “fix” another problem (such as opioid abuse by addicts and those who break pharmacology rules).

This is the state of the medical system. Over regulated, listening to rules advocated by various entities of the government who have gotten involved in the patient doctor relationship. Agendas, bureaucracy’s and layers of “administrators with no medical education in specific specialties” are making decisions and rules that doctors must follow or else they will be punished. And once again, the all-powerful psych community has inserted its presence into the ICD world.

Nearly 40 million persons in the USA are affected by arthritis, including over 250,000 children.

The Lupus Foundation estimates that 1.5 million Americans have a form of lupus.

The Multiple Sclerosis Foundation estimates more than 400,000 people in the USA have MS.

In 2014, an estimated 14,738,719 people lived with cancer of any site in the USA.

It is estimated that more than 5 million people in the USA have fibromyalgia.

At least 1 million people in the USA have CFS, and tens of millions more have a CFS-like condition.

An estimated 1.7 million people sustain a TBI annually.

More than 30,000 people are living with cystic fibrosis in the USA. 1,000 new cases of CF are diagnosed each year. 75% of people with CF are diagnosed by age 2.

Spina bifida is the most common neural tube defect affecting babies in the USA. Between 1,500-2,000 are affected.

Caudal regression syndrome affects males and females in equal numbers. The incidence of the disorder has been estimated to be 1 in 5 per 100,000 live births.

In the USA, about 450,000 people are living with Spinal Cord Injuries. There are about 12,000 new SCIs every year.

We don’t really know how many people in the USA have trigeminal neuralgia. We may make a rough estimate that there is a range of 66,500 to 280,700  as of July 4, 2013.

Hereditary Pancreatitis (HP) is a rare genetic condition characterized by recurrent episodes of pancreatic attacks. It is one of the most painful diseases on Earth.

Endometriosis affects 1 in 10 girls and women in the USA (15.7 Million) have endometriosis, however many women and girls are undiagnosed.

There are an estimated 1 million cases of shingles each year in this country.

More than 37 million people suffer from migraines in the USA and 2-3 million migraine suffers are chronic. Migraines are in the top 20 of the most painful diseases.

In the aftermath of World War I,  204,000 Americans in uniform were wounded during the war.

About 16 million Americans served during WWII, and many of those Veterans are now receiving VA benefits including Pension and Health Care. WWII Veterans who were a part of the Occupation Forces assigned to Hiroshima and Nagasaki, Japan and those American prisoners of war (POW’s) who were housed in close proximity to those cities are sometimes called “Atomic Veterans.”

Up to 4 million people in Vietnam were exposed to the Agent Orange, with 1 million now suffering serious health issues. 75,000  are severely disabled and 304,000 wounded out of 2.7 million who served.

Iraq/AfghanistanAmong the worst of the casualties are nearly 1,800 U.S. troops who have lost limbs in Iraq and Afghanistan, according to Army data.

250,000 of the 697,000 U.S. veterans who served in the 1991 Gulf War are afflicted with enduring chronic multi-symptom illness, a condition with serious consequences

As stated in The International Business Times: The United States has likely reached a grim but historic milestone in the war on terror: 1 million veterans injured from the fighting in Iraq and Afghanistan.

Every fourteen seconds a person is injured and every year almost 40,000 people are killed in a car crash.

The list above does not include all chronic, critical and disabling diseases or traumas. The list above does represent around 139 Million people in the USA that have an illness involving pain. This gives an overview of the amount of patients living in the United States who suffer from painful diseases and physical traumas that are of no fault of their own. Personally, I was born with 4 genetic diseases that are listed as being in the top 10 most painful diseases. I don’t talk about them, yet I certainly structure and juggle my life in a way that a healthy person could never fathom.

According to a CDC NCHS Data Brief No. 273, February 2017:

 Roughly 11,437 people died of drug overdoses per year from 1999-2015. Of those deaths, the CDC says “Regardless of the analysis strategy used, prescription opioids continue to be involved in more overdose deaths than any other drug, and all the numbers are likely to underestimate the true burden given the large proportion of overdose deaths where the type of drug is not listed on the death certificate”.” The findings show that two distinct but interconnected trends are driving America’s opioid overdose epidemic: a 15-year increase in deaths from prescription opioid overdoses, and a recent surge in illicit opioid overdoses driven mainly by heroin and illegally-made fentanyl. Both of these trends continued in 2015″.

The CDC admits: “In approximately 1 in 5 drug overdose deaths, no specific drug is listed on the death certificate. In many deaths, multiple drugs are present, and it is difficult to identify which drug or drugs caused the death  (for example, heroin or a prescription opioid, when both are present)”. However, the The CDC Injury Center states that from 1999 to 2015, more than 183,000 people have died in the U.S. from overdoses related to prescription opioids.

 Heroin has made a comeback on the illegal Narco scene for the last 15 years and CDC says in 2015 the percentage of drug overdose deaths involving heroin was triple the percentage in 2010. Drug overdose deaths involving synthetic opioids other than methadone, which include drugs such as fentanyl and tramadol,  percentage increased from 8% in 2010 to 18% in 2015. Percentage of drug overdose deaths involving cocaine increased from 11% in 2010 to 13% in 2015 and drug overdose deaths involving psychostimulants which include drugs such as methamphetamine,  increased from 5% in 2010 to 11% in 2015.

 On the flip side, CDC reports drug overdose deaths involving natural and semisynthetic opioid analgesics, which include drugs such as oxycodone and hydrocodone, the percentage decreased from 29% in 2010 to 24% in 2015 and the percentage of drug overdose deaths involving methadone also decreased, from 12% in 2010 to 6% in 2015.

Knowing the facts above and understanding that the CDC fully admits, “ it is difficult to identify which drug or drugs caused the death“- it is difficult to pinpoint why such a decision would be made on opioid prescriptions that casts such a broad net snagging up tens of millions of innocent patients in a medical nightmare. Furthermore, the CDC does not identify which specific Opioid causes each death and if it was legally prescribed or illegally obtained, or illegally manufactured on the street.

It is not accurate science to lump all Hydrocodone Opioids together (there are different strengths), nor to put Hydrocodone in the same category as Oxycodone (much stronger). Consideration into taking a closer look into strengths of hydrocodone when changing classifications is warranted. If  the CDC could accurately detail the information such as what strength and what exact opioid and from which specialty of treatment (rheumatology, oncology, etc.) each individual that overdosed was being treated – that would provide a more accurate scientific analysis and one that could lead to more legitimate scientific published studies which would in turn lead to better decision making.

The CDC has a sordid reputation amongst patients dealing with CFS, GWI, PTSD and other  waste basket illnesses. CDC historically has put illnesses they cannot solve or sort out into a “psychological category”. The sooner this is exposed and dealt with, the sooner our medical communities can get on with not having to adhere to ridiculous guidelines  and move on towards progressive research and treatments.

There are “many levels of administrators” standing between the Doctors and Policy. Doctors call these “administrators” the “middle men” and want them gone. They believe this is a source of  massive inefficiency and it is disturbing that they are not being directly asked what is needed for their patients and the medical community.

A legitimate question; is why The Three Ring Circus is being inserted into renown medical specialties whose treatment plans have successfully restored the quality of life of tens of millions if not 100 million chronic and critically ill patients.

Around 4 years ago, patients with serious chronic and critical diseases that were being provided care by top notch Doctors of Rheumatology, Oncology, Orthopedics, Pediatrics, Internal Medicine, Gastroenterology, Infectious Disease, Immunology and many other specialties had their prescriptions for pain medications altered. The alteration began with a change in the monthly distribution of pain medicine.  Instead of patients being able to go to their local pharmacy once monthly to pick up their meds, these patients were forced to drive to their physician’s office to pick up a written prescription, then take it to the pharmacy to be filled. Doctors were no longer allowed to fax or electronically send in prescriptions for restricted medications. This added step caused an enormous and ridiculous workload on physicians and it caused irreparable harm to patients. Patients who were bedridden, housebound, immobile or who lived hours away from their trusted specialists were now forced to travel monthly just to to pick up a paper prescription. This is a tremendous burden for the chronic and critically ill patient. These patients were barely able to keep up with travel to their 3 or 6 month check-ups as required by all specialists treating such patients.

The distribution change came from the FDA who handed it off to the DEA. “Under a final rule issued by the U.S. Drug Enforcement Administration (DEA), hydrocodone combination products are now in a more restrictive category of controlled substances, along with other opioid drugs for pain like morphine and oxycodone.  After a scientific review, FDA made the recommendation that DEA take this step in December 2013. We concluded that hydrocodone combination products meet the criteria for control under Schedule II of the Controlled Substances Act, and we believe DEA’s new rule will help limit the risks of these potentially addictive but important pain-relieving products“.

Fast forward to 2017 where “The Opioid Epidemic” is a hot topic. Patients being treated by specialists for chronic and critical illnesses are being discarded by doctors because of the fear of punishment for prescribing opioids. A climate is forming “that opioids are bad”, even though Doctors know well that safe dosages of opioids in concert with other medicines have given their chronic and critically ill patients a resemblance of some sort of quality of life.

Addiction is a category of its own. It is monitored by the Psych community as a DSM code. However, when the Psych community meddles in ironclad renowned ICD specialties, we have an enormous problem in our Country. This goes beyond the absurdity of The Three Ring Circus to violation of Human Rights.

One of the most painful things to experience in life is to lose a child or loved one. Whether it be from warfare, a crime, an accident, illness or an overdose; the emotional pain is crippling and can destroy lives and families. This is a hurt that never leaves.

The “opioid epidemic” fueled by drug overdoses created rules and legislation that stymied a system that was working well with ethical medical specialists and their patients. There were unethical doctors and loopholes that legitimately needed to be shut down. However, I don’t think there is a mother, father or family member who has lost a loved one to an overdose who intended the opioid epidemic fueled regulations to do epic  harm to the disabled, the chronic and critically ill patients and their families. I do not believe this was the original nor current intention.

In Warfare and Intelligence, there is great awareness of unintended consequences when dealing with National Security issues. These are the nightmare situations and facts that keep good people up at night. It takes a certain trained mindset to think through a tough issue and problem solve for the long game; to avoid taking the easier short term solution and risk detrimental externalities and unintended consequences.

Bureaucracies are not designed to look at the long game, which includes looking at all  potential unintended consequences or externalities of their decisions. Time and again bureaucracies display ineptitude, lack of flexibility, inefficiency, ineffectiveness and severe bloat.

In my lifetime around politics, I’ve seen some very good legislation that has served its purpose well. I have also seen well intended but poorly thought out legislation that has cost hundreds of millions of dollars in externalities. The legislation and pressures being applied to doctors to stop prescribing pain medicines to patients who are diagnosed with chronic and critical illnesses will cause external costs- ranging  in the billions. Tens of Millions of patients are at risk of losing their jobs, going on disability, committing suicide or will need caretakers. The stress of this situation is not only affecting the patients but also the children, spouses and families of the patients.  It makes no sense to take away the quality of life for the chronic and critically ill patients. It is a recipe for disaster on a socio, familial and economic scale plus it is highly unethical and inhumane.

Chronic and critically ill patients in the United States are being victimized, humiliated, undertreated and many are going untreated due to new opioid rules. This is happening because of poor legislation, short sighted rules, lack of scientific studies, lack of valid specific factual data, bureaucratic ineptitude and politics.

Sadly, due to the massive media attention, public opinion has now been swayed in a one- way direction due to incomplete facts. I have been amazed that 90% of the articles on “The Opioid Epidemic” talk about drug abuse, overdoses and how “dangerous” opioids are. I believe this has to do with the enormous power the FDA and CDC behold. Doctors seem scared, fearful and many good Doctors are leaving their practices.

If I could have one wish for this Issue it would be this: “Dear President Trump: Please drain the swamp of the powers that created this medical dysfunction; please structure a fix into the new healthcare system to allow chronic and critically ill patients the treatment’s they need and deserve”.

 I’ve always said it takes a strong person to be a caretaker to a sick child, family member or grandchild.  It takes an equally strong person to strive to overcome and live with the hurdles of chronic and critical illnesses. Never Quit, Never Give up.

three-ring cir·cus

“a public spectacle, especially one with little substance”.

 

Julia Hugo Rachel

Very Lucky Girl on Valcyte

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Viral Assault- The Book www.viralassault.com

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http://www.viralassault.com

 

 

 

 

 

 

For The Fallen. CFIDS/CFS/GWI/PTSD

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Clyde was born in 1913. He was just a small town guy from a textile milling town in the Western Carolinas. He joined the Army National Guard and was essentially called up and Federalized after Pearl Harbor. My God Father was at Pearl Harbor, he was a Naval Doctor aboard a ship. Since he was small in stature, during the aftermath of the bombing- he was sent down into the ships deep hull to retrieve bodies. My God Father did not know Clyde, but it always amazes me to see the 6 degrees of separation in life. As one beloved was being bombed, another beloved was being called to the fight, only in another region- another fight.

It would be six degrees of separation that would eventually lead me into the fray of CFS, GWI, PTSD and Suicide.

Clyde spent most of his training at Fort Jackson in South Carolina. He went into The North Carolina Army National Guard. He said he was being deployed to help entertain the troops. He deployed to France, Germany, The Netherlands and Belgium. We don’t have too many official military records on hand, due to a fire that occurred at a military records storage facility in Missouri. Many valuable military records were lost in that fire.

101 Years after Clyde was born, in early 2014, I was packing up a familial house in North Carolina. We were moving everything to the West Coast. I came across many trunks and many folded flags in that house. The house was rich with Southern and Military history. I took great pride in being entrusted with this job, but soon I would find that it was a bittersweet task.

The basement of the house was dark and dimly lit. Boxes of clothes and belongings were up a steep flight of stairs. Neatly packed into boxes, were Clyde’s personal belongings- his clothes, his hat collection- which I wear proudly and his miscellaneous trinkets he brought home from World War II. One of those trinkets was a lovely jewelry box. I opened it to discover a type written note that said “here is the key to my trunk, HANDLE WITH CARE”.

Since Clyde was not the dramatic type, I took seriously the capital letters used in the note then set out to find “the trunk”.  Down into the dark basement I went to find Clyde’s trunk. As I pulled the chain to turn the only light on, I was overwhelmed with how many trunks were stacked. Men who sent their trunks home to their families with detailed instructions. The amount of loss rushed over me as I leaned back on some ancient piece of junk that is my Huffy Bicycle. I startled as it fell over and for a moment- happy memories flowed forward instead of sadness. Those happy/sad memories are intertwined in my life and they flow back and forth like tides. I find it difficult to find my shoreline sometimes, but for the grace of God, have met great men and women who have managed to say or do something- that put my sails right.

The Huffy took me back to her original buy at a local used bike shop near Williams AFB. Air Force pilots trained there as well as pilots from all over the world. The Huffy was used as a “flight line bike”- meaning she was pedaled to and from the tarmac by pilots, who would hop off of her and saunter over to get into their planes. I made sure she had a basket on her, as that came handy for after flight activities. Like drinking and pedaling. Everyone thinks the AF is stuffy compared to the other branches. They are branded as “squeaky clean”. Believe me, they have just as much fun as any other branch, but they do it on the down low. In the larger planes, they also don’t have parachutes. So they know that on any given day it can be your day to die. “I’d rather be lucky than good” is the most common theme.

I had forgotten the Huffy had been shipped back here-to this house. I petted her gently and said, “I’ll never leave you again”. Talking to inanimate objects or gear is something I do. You learn to love your gear and take care of it, it becomes almost like an appendage.

I stepped away from the Huffy and found Clyde’s trunk, it was clearly marked in black bold letters with his name and unit number on it. The key he had left in the jewelry box opened the trunk. I started going through the trunk delicately.  I found binoculars, a type writer, a trench coat, a hat, some ribbons, medals and other items. I quickly realized this was not the trunk “of an entertainer for the troops”. I found serious navigational devices, notebooks and other items and intuitively knew I was going to need to tread carefully. I removed all the items, searched them then moved onto the trunk itself. It took me an hour or so and a large lamp for better light, then only by accident, I found a hidden compartment sewn within the liner of the trunk. I pulled out an old musty envelope from its’ secret hiding place thinking I would find more of Clyde’s very very personal love letters to his gal back home. But what I found instead, was horrific.

There were 12-20 black and white photos. On the reverse side of each photo, was neatly typed notes of the date, the location and other details about the photos. In one such note Clyde said, “I am beneath the covers in my tent by which I type these notes. Please take great care to get these into the right hands so these may be officially documented”. Obviously, they were in my hands and I was shocked. Clyde had taken the pictures and developed them behind enemy lines under fear for his safety. The pictures were unlike any others I have ever seen. They had a raw feeling to them, as if Clyde knew exactly what their existence would mean. They are the most horrifying war pictures I’ve ever seen; they are so realistic you feel as if you are there. The pictures were of massacred Jews from around Europe lying in fields, in trenches and in a factory. According to Clyde these were “secret” locales not yet known about.

I went upstairs and I picked up Clyde’s folded American flag and I fell asleep with it in my arms that night. The flag was in her protective plastic case in a box, I couldn’t let her be shipped back in a box; she would stay and travel back with me. I know that what Clyde experienced was similar to what so many have experienced while serving this Country. Its’ a universal feeling of sadness spread out amongst an apparatus from child to mother to wives to fathers and grandparents to children to significant others. It is also an honor above all others.  Its’ an apparatus you may not recognize unless you’ve been very close to that fire known as War and all of the tentacles that support it.

Our veterans that serve our great country do not deserve the way they have been treated as far as the medical issues that they have been bluntly hammered with. Furthermore, I don’t think that men and women go off to fight for the civilian population so that they could return home only to see the free they fought for suffering from a similar pattern of illness and distress. This is a lose-lose for everyone. This is America and we need to remember who we are.

I decided to do a project in the hopes that I would bring hope to millions of sufferers of CFS, GWS and PTSD because I have a link across the board with all of these illnesses. I’ve experienced all of these illnesses personally, with family, friends and loved ones. I’ve been treated beyond horribly and I’ve watched others be treated like less than dog feces while trying to seek treatment. And then there’s the fact that these diseases keep changing names every so many years. A new name equals a new stall tactic and perhaps we will all move forward with a new set of studies. In the meantime, people are becoming sicker and dying from CFIDS, CFS, ME, GWI, GWS, PTSD, TBI’s and their related cousin- suicide. Why do we have to go down more decades of suffering and death with more useless wrong way studies? Why can’t we start treating patients like human beings with treatments that are known to be useful right now? I’ve had a severe form of arthritis since my early 30’s. Modern medicine still doesn’t know what the exact “cause” of arthritis is, yet it is treatable!

There is a lot of very good sound data on these diseases that can lead to treatments now. The time for the continuous shuffling of this house of cards named GWI, CFS, PTSD, TBI’s and related Suicide is over. Cards that shuffle and play games, you’ve had your time in the dark ages. Now it’s time that all patients get to stand in the sun. It is time for action, hope, treatment and possible cures. No More shuffling.

 My story is just my own. It may not be status quo to other patients of CFS/ME, but its’ my story. It’s a story of truth. It’s a story of saving my sons life, fighting for my own life and of watching my friends die. It is a story of war and terror and all the scars and illnesses that we walk away with.

My son and I are good. I could walk away today and never look back on this issue. But that would be a false statement. I thought I would write a book and do a movie project based on the sole objective of helping other patients lead a more hopeful life, to improve patients’ lives and to bring International awareness to a host of serious biological illnesses that are being tossed into a wastebasket diagnoses within a psychiatric ball of crap.

But that turned out not to be the entire case. I am doing this project for all of the above. However, I am not only haunted by those suffering now. I am doing this project to honor those that have passed away. I am doing this for The Fallen. To those that have fallen, let me give everything I have in your memory to right these wrongs and along the way, may many more be spared.

On Monday June 27th The Preface of Viral Assault The Book will be released. We will be releasing the book chapter by chapter, every 7-10 days. Viral Assault can be read here or on Facebook or on Twitter and on Medium. We have chosen to release this in print and audio. There is no cost to read or listen to this book.

 Facebook       https://www.facebook.com/Viral-Assault-1693346507596813/

 Twitter           https://twitter.com/Viral_Assault

 Medium       https://medium.com/@Viral_Assault

 

 Julia Hugo Rachel

Very Lucky Girl on Valcyte

 

 

 

 

 

 

 

Fractured But Not Broken. CFIDS/CFS/GWI/PTSD

  Ruby

There is no crime in having CFS, GWI or PTSD. Yet grievous acts of criminal cruelty have been afflicted onto millions of patients that have these diseases. I have spent the past year reflecting on our journey with our illness. Although I have been deeply fractured by this battle of a journey; I am not broken. It is for the patients that have come before us and those that are yet to be diagnosed; that I have decided to devote the next 5 years of my life to further awareness  for these diseases. We intend to accomplish this through a national political campaign that is designed to shake up the misunderstandings, the misdiagnosis and the misconceptions about these diseases. The first step in the process to come will be our book, Viral Assault, to be published in December 2015. The collaboration of this book involves a team that is widely respected, internationally recognized and highly credible. I can promise you one thing. I will not stop, I will not quit and I will not go unheard throughout this campaign. You, the patients, deserve to have the funding for research and treatment centers. You will never get this without a political campaign movement and that is why I have chosen to undertake this project.

Although I have not been in the op-ed category with my past blogs, I feel a need to express to you my concerns for the path our diseases are on. I see some progress, I see more regression. I see deception and I see those that cater to causes that will never align our diseases with positive movement in the future. I see a political system in chaos and I see some groups trying to step into state or national politics without any experience in the field. Then, I see “the players”. The players are interesting to me as I think they have held up progress for our diseases for their own self interests. Be it incompetence, inertia or cover your own behinds; these “players” are bottom feeders aligning with folks that really do not have you as a patient in their best interest. I also see some absolutely incredible and amazing folks, whom I call the “Movers and Shakers” emerging in GWI, CFS and possibly PTSD. These folks are brave, highly intelligent, politically savvy and have excellent credentials. Most of these folks, happen to have served our country as well. I am excited to see what they do on The Hill and for the patients. I am excited to support them in their goals to serve patients.

During the writing of Viral Assault, a documentary will be made to reflect the journey of the process. The documentary and book will reflect on facts of our personal journey through this illness, past historical facts that have never been explored and future studies on a theory tying PTSD-GWI-CFS with a possible link to the unthinkable. We invite you to join us on this journey via you tube.

The book and documentary fuel and justify the platform for a political campaign. Political campaigns are best run by seasoned professionals.

The treacherous political process is no place for amateurs. Therefore, we have elected to have the most experienced, knowledgeable and expert navigators of the political process on our team.

For now, the primary avenue for communication for patients will be this blog. We look forward to providing you with additional media through a variety of avenues.

I know that so many patients have been fractured as have I through these diseases. I implore you to stay strong and look to a brighter future of better understanding, treatment and quality of lives.

It has taken me a year to circle to this point of beginning to write Viral Assault. The humiliation, shame and cruelty I experienced through our journey was nearly unbearable at times. To begin the book, I needed to come to terms with how badly I had fractured during the process. While facing the pain, I realized that although I was deeply fractured, I was not broken. I continue on a path of healing with Blake and I look forward to giving you an update very soon on Blake’s condition.

 

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Feel Free to Check Out my Complimentary Site: http://juliahugorachelmomentstoremember.wordpress.com/

 

 

 

 

Watching Over Blake. Eyes on Progress. CFIDS/ GWI/TBI/ PTSD

  • winslow (3)

              “The flight of the owl is slow, silent and solitary”

 If I could give my son anything,  I thought I would give him back the 12 years he lost of his youth. Since I cannot do this, I am determined to give him a future of unlimited possibilities.

When experiencing a chronic illness, it feels as if time stands still. In actuality, time is moving slowly and the flight is silent. Silence envelopes ones life after the combustion of life halts to a stop with a chronic illness.

I have taken the role as an observer in Blake’s’ life. He began independent living in November 2012. Two weeks after the start of his new beginning, Blake was hit by a car in front of the University he attends. The hit was gruesome, yet Blake managed to hobble away with minor injuries.

I watched and slowly waited as he fell into a relapse that amounted to a vast drop in grades, weight and cognitive abilities. I watched as he fought to overcome the slide in order to slowly recover his abilities. It took 8 months to recover fully from the trauma.

Although 8 months seems like a long time, it is a drop in the bucket compared to 12 years of ones life being ripped apart. Especially for a 24-year-old.

This relapse was different on many levels. This relapse was caused by a physical trauma, not a setback from an unknown factor. During this relapse, Blake never missed a day of school as a full-time University student studying Physics/Engineering. Although his weight and grades declined, he used every tool available to him to methodically step back up the ladder to his peak.

Blake has now successfully attended University full-time (without missing one day for illness) for 6 consecutive quarters. He has now achieved perfect attendance for the past 16 months. His classes include upper division mathematics, physics, engineering, chemistry, biology and geology. His GPA before the car trauma was 3.66 per quarter. His GPA today is 3.25 per quarter.

Blake began a mild physical exercise program of walking and lifting weights 14 months ago. He decided to join an Army readiness program and started running 11 months ago. He had to halt running and physical exercise for 2 months while he was hobbling on a sprained ankle after the car trauma. He began running again in February and by June was up to 4 miles, three times per week. He has also participated in vigorous ruck marches and tactical labs in the field under extreme conditions.

Blake was put on Valtrex as a therapy after his Valcyte treatment. Post Valcyte and present Valtex treatment, the opportunistic infections are now gone. The HHV-6 levels are lowered. The EBV are still high. Anti-viral treatment is like good endocrine treatment in that the patient is treated on “how he/she feels” not necessarily on “what the lab values say”.

On a recent check-up with his infectious disease doctor, it was determined that Blake may be eligible for military service in 6 months. Until then, he will be starting an antibiotic for progressive treatment for inflammation in the eyes which is starting to be recognized in patients. The tell sign is red lines in the eyes. I have noticed strata looking lines in Blake’s  eyes and attributed this to the onset of his illness.

Blake was diagnosed with a thyroid disorder in March. He has been on thyroid medication for five months and notices a great improvement. His endocrine values were slightly off. His thyroid ultrasound showed a small goiter and a cyst. His familial history on the Irish side shows he is a 6th generation thyroid patient. Many physicians diagnose thyroid issues on lab values only. It is imperative to find an endocrinologist that diagnoses on;  lab values + ultrasound + familial history + how the patient feels = diagnosis.

At this moment, Blake is at 85% of cognitive and 80% of physical capacity. The goal of his treatment team is to get Blake to 100%. Blake hopes that will happen in the next 6 months. His goal is to join the Military and to serve his Country.

For a long time, I fought and watched over Blake at close range. Now I find myself watching from a greater distance. I wondered if Blake would be able to “catch up” socially and if he could find his way. We had  three prior attempts at independent living. This fourth time has proven to be exciting, yet not without a few hurdles.

Blake has a faith that is strong and complete. He is a strong young man  with  dreams and goals. It is a pleasure to see him play sports with his peers, to participate in ocean and lake activities, to attend social functions and to give to others through community service.

All of this would not be possible without Valcyte treatment. The alternative immune treatments he participated in look to be responsible for stimulating the energy to exercise; but only after primary healing had occurred. The Valtrex (or other long-term anti-viral) is a necessity for treatment to continue fighting the viruses after the heavy hitting Valcyte treatment. Clearing up any opportunistic infections is critical to success. A patient will never attain a moderate level of health if a thyroid illness is present and remains undiagnosed.

We have no idea what the next year will bring. We are certain that whatever this illness throws at us, we are willing to fly slow and defeat it.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Paddling for Will. A Beautiful Soul. CFIDS.

 I have been writing Very Lucky Girl on Valcyte for 3 years and 3 months now. During this time, I have shared our families journey on Valcyte along with some of the lessons we have learned along the way. We have opened our lives to readers in the hopes that some patients will gain more knowledge about their diseases.

Very few  full recovery cases have been documented for CFS/CFIDS. Blake’s’ case is miraculous, yet for 6 years he stood on the edge of a cliff. He stared into the abyss of the unknown. It is for youth that stand on this cliff, that I continue to write and continue to progress towards an agenda seeking political action on behalf of diseases linked with CFIDS/CFS/GWI and PTSD..

I receive many comments on this blog and I respond to each one individually. The comments have been the most rewarding part of writing this blog. I have had the opportunity to speak with parents and youth around the world who are experiencing the same journey as Blake and I have endured. Together, we travel this road. Together, we face our hurdles.

On January 20, 2012 at 8:55 pm I received a comment on the blog from a young man named Will. Will explained that he identified with Blake in many ways. I replied immediately to Will that evening and commended him for seeking medical attention with a well-known doctor. In my heart, I sensed that Will was very much like Blake. They both were runners, they both were good students, they both had lost weight and they both had lost the ability to cognitively understand reading materials. The similarities were haunting and familiar. Will was around 21 years old, Blake was 23 years old.

I did not hear from Will again. Today, he crossed my mind so I went to email him to see how he was doing. The last I heard, he was making a decision on what route to take with his medical treatment. I was curious to see how this was going for him and how he was feeling.

Instead of emailing Will, I decided to Google him. It was a sixth sense judgement call that sprang from pure intuition. As I pushed the “search button” to Google Will the links started to appear. My eyes shut tight, they immediately began to swell as tears flowed down my cheeks and sobs began emulating from my throat. Will passed away on May 17, 2012 after battling this neuro-immune disease for 7 years. He passed away 4 months after writing to me.

I began to read more about Will through the obituary and articles. Will had turned to music as did Blake. I listened to Wills’ awesome tunes.  I re-read his emails and I could feel his resilience and beautiful soul. I watched a Video of the Community Memorial. I watched the faces of Wills family, his friends and his community in the video. This beautiful soul was surrounded by so much love, so much compassion and such positive energy that I felt enlightened to have had a glimpse of Will through simple email messages.

Will wrote to me because he was looking for answers. Now I search for answers from Wills’ life.

I grew up in a beach town, body surfing. Recently, I have gone back to swimming. Every time I paddle out, my heart shall connect with Will. He was an amazing young man and a beautiful soul.

My heart and condolences go out to Wills family and friends and the community who supported this young man.

RIP Will.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Man Down. Millions More Going Down from PTSD/GWI/CFIDS

If I only knew 10 years ago what I know today, so many  lives would be changed and more might be saved.  

The shock and awe of watching somebody you love get eaten up by a  mystery illness is overwhelming and  frightening.

We train so hard to be the toughest, to know how and why to be the best. When something unknown explodes in life and there are no tools to put the pieces back together, what do you do? How can one do their best with zero?

During the past decade, we learned how to create our own tools and survive. At this point in Blake’s recovery, we could easily lace up our boots, stand  straight and never look back at this issue.  Except for one thing: the man down was my son and the millions more falling are children and soldiers/warriors. We don’t leave anyone behind, that is unacceptable to us. We walk towards the fight, not away. We have learned  a few tools and we can  now hunt for more solutions. Walking away is just not an option for us. Our goal is to help others by sharing our journey.

HHV-6 is a virus that attacks the brain. Although most people carry this virus in their body in a latent status, what they do not know, is that it is like a grenade waiting to go  Rambo at a given chance. This virus “reactivates” which means that when a human is hit with a bacteria, gets a severe flu, catches a pathogen in some 3rd world country or undergoes a physical injury/trauma the grenade  pin  might get  pulled. The human body is then  weakened just enough whereas  this virus  starts  replicating. HHV-6 virus has been linked with Multiple Sclerosis, Autism, ALS, Chronic Fatigue Syndrome,  Lyme Disease,  Gulf War Illness  and  PTSD.

We have scientific proof linking HHV-6A to these diseases. This does not mean this virus is the sole cause  of the disease; but  what it does mean is that the patient  has a shot at recovery by treating the  HHV-6 virus  by  getting  it  lowered to  within  an  acceptable  and  safe  range.

HHV-6 virus loves to hang out with the Epstein Barr Virus (EBV) as well as a bacteria called Mycoplasma. They sound benign, but both are stealth pathogens and cause destruction to organs and the immune system. This may not mean much to you, but you might be surprised to learn that these 3 partners are rampant within the military, are contagious  and may be linked with suicide and  PTSD.

 HHV-6 has been proven to be linked with schizophrenia and suicide. Viral antibody titers have been proven to spike  dramatically around 6 weeks prior to suicidal  behavior.

When Blake first got hit with these viruses, his “mood and character changed noticeably”. I mentioned this to doctors and they sent Blake for a psych exam and prescribed him antidepressants. Had we caught this one small  “tell-tale sign” at early onset;  we would not have  needed  to  visit  100  specialists,  spend  a  quarter  million  dollars and  stare  at  the  edge  of  death  for  years.

This virus likes to tango with  testosterone and cortisol.  We are seeing the highest percentage of suicides in men from the ages of teens through late 20’s. This could be due to the fact that men have testosterone and cortisol changes/activity  occurring  around  those  ages.

If the virus is in reactivation mode, many antidepressants will work against the patient instead of for him/her.  This is because the patient is not clinically depressed, but rather  is suffering from a brain disease. Psychologists and antidepressants are useful; but only in tandem with addressing and understanding the underlying neuro immune factor. The brains of those with TBI’s and  brain virus need to be monitored by neuropsychologists  who  are  skilled  in  brain  trauma  and  healing.

 The virus attacks the brain in a way that shuts off the inherited survival and will to live trait. It can cause unnatural behaviors in people who would normally never consider suicidal thoughts. The virus seems to hit the body hardest after the initial assault when a  patient  is pushing themselves to their emotional and  physical  limits; not knowing that their body is in trouble.

During combat, extreme athletic training or when recovering from an injury; the body is normally in replenish and heal mode during down or sleep time. However,  if  a  virus is escalating  in the blood  and the person is pushing it to the limits; normal replenishment cycles malfunction. As this cycle continues, the  brain  disease  targets  areas  of  the brain thereby fostering suicidal tendencies.

One sunny day as I was heading out to the horse  pasture, I looked  in Blake’s window  and  witnessed him with a loaded shotgun in his mouth. He was sitting on his bed, he had a  glazed and blank expression on his face. It took me a split second to figure out that I couldn’t run fast enough to get to him through the back doors of our house before he pulled the trigger. In the next hair of a second, I was tearing  at  a screen and hurling myself  through  a  4×6 ft.  double pained window.  At that point in time, nothing mattered to me except for getting that gun out of his mouth. I was able to accomplish  that mission without any shots fired. Blake is alive and well today. Yet every time I read a Military report on our suicide numbers my heart  fractures just a little more. Every casualty reported (and we know how many are not reported), news report and every email or call I get about this issue; never gets easier. This is one of the main reasons we are lacing our boots tighter, standing  straight  and  walking  towards  you  for  support; tool  trucks  in  tow.

PTSD awareness is on the tongue of many right now. We know this is stress related, but what we didn’t know is that some, or many of these cases might be related to HHV-6 and/or Traumatic Brain Injuries. When we look at high-resolution MRI’s of these patients, white spots are seen on the brain.  These spots can be caused by this virus. The spots can go away with anti-viral treatment.

The only known medication scientifically proven to effectively treat HHV-6 is an anti-viral named Valcyte. In a 2006 research study, Valcyte was found to be effective in lowering HHV-6 titers in a subgroup of patients having high antibody titers to HHV-6 and EBV.

Why does this matter? Because this information could save lives. If you notice 3 OR MORE of the symptoms below, please read our prior blog called “Getting Intimate with Your Viruses Part 1 & Part 2”.  The tests and tools listed in that Blog took us 10 years to figure out.

Symptoms to look for include: 1) Change in moods or outlook in  life; Anger, Depression. 2) Fatigue with unrefreshing sleep. 3) Insomnia 4) Memory loss. 5) Cognitive decline. 6) Migraines. 7) Weight loss 8) Flu like symptoms that linger 9) Joint/Muscle pain. 10) Very low blood pressure.

Sometimes all we “see” is the depression at first onset. But if you can look beyond that and notice any other symptoms noted above, you then have biological options to research. The sooner you catch this virus and  seek treatment, the  greater  your  chance for a successful and timely recovery.

We have 10,000 disability claims filed to the VA each month. We have unusually sky-high suicide rates. We are looking at high numbers of deployed coming home within the next 18 months; which some predict up to 50% could be afflicted. All three of these groups need to know that if they present with 3 or more of the symptoms above, they have the right to a blood test for this virus and all of the others linked with it. These are high risk groups.

It is up to us, toolbox in hand, to be walking towards those that need us. Please support those at high risk because very few,  if any,  are getting the support they deserve and need.

 Our  team  will  be arriving  with  a  convoy  of  tool  trucks.  (More on that program to come).

JULIA HUGO RACHEL

VERY LUCKY GIRL ON  VALCYTE

VLG on Valcyte has added a complimentary Blog about our Journey Towards Healing.

 Please visit us at: http://juliahugorachelmomentstoremember.wordpress.com/2012/07/05/a-decade-later-a-fresh-start-begins-july-4-2012/

Blake Update: Blake made it through school without missing one day for sick time. This is the first time in 10 years that he has been able to make it through a school term, uninterrupted. He also received a 3.66 gpa this quarter while studying  Physics/Engineering as a major and Military Science as a minor.

Blake’s  weight is at 188 lbs and holding steady; he is 6’2″. He is starting to regain muscle mass. He has  gained back 58 lbs. He looks healthy, yet the cognitive decline is still noticeable when he is tired.

We attribute this remarkable acceleration in recovery to the initial Phase 1 of treatment:  vitamin therapy, diet change and 3 years of Valcyte treatment. 

Phase 2:  has been long-term use of  Valtrex for the chronic EBV. Unexpectedly, an incredible benefit has been weekly IV’s of Vitamins/Minerals and Glutathione administered by a well versed Natural Path. This is not a Meyers Cocktail, but rather a  formula based on Blake’s  needs. We feel these IV’s may be essential for many patients and plan on focussed research on this treatment in coordination with antimicrobial treatments. More information to come on these IV’s. We have heard of great success stories from military and civilian patients  receiving  these IV’s and are excited.  Blake would not  have excelled as much as he has this past 3 months, had it not been from the combination of  holistic and western medical treatments in tandem. This was duly noted and planned  from the onset as Blake needed something to boost the immune system; we  just  did  not  know  “what”  that would  be.

Phase 3:  will be adding cardio physical exercise into Blake’s  routine as well as starting on medication to address bacterium and viruses that surfaced as the HHV-6 and EBV lowered. This is a long distance run, not a sprint. We were told  by our original  Doctor, to be ready for the long haul.  Blake was too far down the ladder.  Thus we prepared for a journey, not a jaunt. Doc warned us that as the HHV-6 was lowered, other viruses that invaded when Blake was so weak would rear their heads.

Blake will try summer school to get a calculus class completed. After that, he has 4 weeks to rest until Fall Quarter.  Blake is taking on a more serious leadership attitude about getting well. He is nearly  independent. He is motivated constantly by the fact that he cannot wait to have 100%  health and to ultimately serve his country.

A few days ago, on a sunny summer day, I took a chance and looked through Blake’s  office window on my way to the vegetable garden.  I smiled.  His stubborn Yellow Labrador was at his feet and I noticed he was intently looking at a video just posted by Mr. Don Shipley of Extreme SEAL Experience. I could tell by the expression on  Blake’s face that he has a new dream. His life long dream changed from going to Annapolis and flying  planes. He switched over to linguistics and jumping  out of  planes.   The  fact that  Blake is  even  dreaming  about  his  future  was  worth  that sacred  glance  through  the  window.

Shooting Straight On CFS/CFIDS/GWI/PTSD

Although we do not have definitive biomarkers for CFS right now, we have proof that two subsets exist within the disease. Up to 75% of  patients  have elevated antibody titers to HHV-6,  EBV  and CMV.

This subset is known as CFIDS.

 We know that these CFIDS  patients  have viral reactivation  and are prone to opportunistic infections such as Mycoplasma Pn., Chlamydia pn., Coxsackie, Echovirus plus  plethora of other pathogens. We are  at the beginning  stages of diagnosing and treating these infections within these patients.

The subset of patients who do not test positive for  pathogens is known as CFS. CFIDS  patients have the luxury of being treated for their viral and pathogen infections, yet CFS patients are left without any available treatment protocol. One protocol that may pan out for CFS patients is Rituximab. Apparently, Rituximab  may work in up to 12% of patients who do not test positive for viral reactivation and who do not have active opportunistic  infections.  This medicine seems to work best on  those patients who previously contracted  mononucleosis; yet  further clinical trials are  needed  to  verify  this  drug  as  a  viable  treatment.

I originally began looking at Rituximab back in 2009 as a treatment for myself.  This was a drug that would have been harmful for Blake, as he had pre-existing infections which precluded him from safely taking this drug. Yet, I  thought it may be an option for me. I was eventually found ineligible for Rituximab treatment  due to pre-existing autoimmune conditions. Although the onset of  my  CFS began with Mono at age 15, I had since acquired 7 auto immune diseases, viral infections and  my body was riddled with opportunistic infections including  insidious blood infections.

When I first learned that Blake could die  from CFS, I sought out a CFS specialist who had access and extensive experience with  the drug Ampligen. From what I had read and “heard through website chats”,  Ampligen was the drug that could cure my son. I  was  extremely determined to get my son on Ampligen,  no matter what the cost was to our family.  On our first visit to the CFS specialist in San Diego I  asked  that  my  son  receive  Ampligen. The  specialist  informed  me  that he would not administer this drug to any of his patients, including Blake. I asked him why and his response was clear.  According to this specialist,  he  had  used  Ampligen  on  many  patients and  all of the patients ended up in worse condition over the long run.  He had known these patients for years and he still stays in contact with those that are alive. This was a drug he had thought would be helpful and one in which he had high hopes for.  This specialist was devastated  when he discovered  patients had long-term negative effects to Ampligen.  At  first,  it seemed  Ampligen  was  a miracle cure for CFS patients.  At first,  patients made remarkable recoveries.  Yet Patients began having severe side effects  and  in his experience, the drug  became dangerous as treatments  continued.

I  trusted  this  specialist  explicitly as he had come highly recommended.  I trusted his opinion  to go with a different drug for Blake’s’ treatment called Valcyte.  In our case, we fit the exact criteria for the Valcyte treatment protocol, so we were in the subset that had a fighting chance for recovery. Valcyte had been FDA approved for transplant  patients  thus we  felt comfortable with the associated risks.  Blake was on the verge of shutting down and we were left with few options. One thing I did appreciate about Valcyte, was that it was not a life-long therapy.

One of the conversations that most CFS doctors do not like to have  with  their patients, is the role of HSV-1 and HSV-2  as  definitive catalysts in  reactivating  pathogens in  chronically ill patients  suffering from infections. CFS/GWI/Lyme and Autism patients have not been properly informed that  if  they  carry HSV-2 or HSV-1 at high antibody levels, they need treatment for these viruses as well  as  their  standard  illness  protocols.  Shooting  straight  from  the hip,  we need to know this  information  if  we are to get  well  from  these  diseases.

The time for the “sex talk has arrived”. The  infamous “sex” talk that has been given by most parents to their children, needs to be given by doctors to their adult patients. If  HSV-2 titers  rise above 3 or more in a chronically ill patients, there  is a good chance that  unless  these elevated titers are lowered with antimicrobial treatment,  the patient may never recover from CFS/Lyme/Autism/GWI or Epilepsy.  What was once thought of as a simple nondestructive STD that warranted treatment when an outbreak occurred;  is now recognized by top microbe hunters as a factor that accelerates and will  fuel the fire in pathogen reactivation  thereby  prolonging chronic illness.

This is the “sex” talk that every doctor in America should be having with their patients, yet mainstream medicine has yet to recognize the role the 8 herpes viruses play and have underestimated their potential to cause and/or ignite disastrous chronic illnesses and further a  pandemic which has begun.

Many Gulf War Illness, Lyme Patients, Autism and Chronic Fatigue Patients do not understand why this  blog has focussed on  tying these particular chronic diseases together as a family. Although we share different genetic findings, although our brain dysfunctions are not exactly the same, although our behaviors are similar yet not exact; we share one thing in common. A high percent of us have elevated viral antibodies, known as viral reactivation to HHV-6, EBV and/or CMV.  We also share many of the same opportunistic co-infections (see previous blog for full pathogen list). These pathogens may be seen in PTSD as well.  We suspect PTSD is a mix of TBI’s, MTBI’s,  stress and  pathogen  infections  leading to  CNS  and  immune dysfunctions.

Whether these infections compound our chronic illnesses; are a starting point for our illness, delay progress in healing from our illness or further our illness to fatality; one thing is for certain. All of us must address these pathogens by getting them diagnosed and treated so we may research and explore all of the reasons underlying our illnesses in order to prevent and cure ourselves and our future generations.

If step One is pathogen testing and treatment, then the following steps will open the doors to discovery for answers and cures. In order to  take Step One,  we must unite as one group to lobby for antimicrobial treatment for this pandemic.  Stop The Pathogen Infections in us; Save the World.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Blake Update:

Blake was hit with an unusual crash during his second quarter at  University. He was able to maintain one class with a 4.0 GPA average,  yet took a drop in his other 2 classes.  He woke up in the 3rd week of school and could not remember what he was studying.  At first, we thought he had a stroke.  He was studying math and engineering but had suddenly lost the ability to recall the theorems and calculations; literally overnight. We suspected PANDAS and had the appropriate lab tests done.  His handwriting had declined and there were behavior issues that were out of character.  If Strep A had been active in Blake’s brain since onset of illness at age 14,  he will still need treatment for this infection. This summer,  he will be undergoing consultation for this issue as well as beginning treatment for chlamydia pneumonia.  He started Trace Mineral and Vitamin IV’s with glutathione 1x weekly. He is also taking Monolaurin and Cortrex for adrenal support.  Blake now weighs 188 lbs and is 6/2″. He has gained 56 lbs.  He is able to walk and swim,  yet he has pressure in his head when he runs.  He is able to hike a few miles without fatigue and is active daily.  He is currently enrolled at University 3/4 time.  With each “setback”, Blake has learned to bounce back by utilizing more resources available through the disabled student program and he is adapting well by learning  from past events.  Strep A in the brain, also known as P.A.N.D.A.S. is thought to be seen in adolescent children only.  However,  we believe if the onset of the chronic illness and infection begins at the pediatric stage, this infection may linger in the patient until it is eradicated.  More research needs to be done on P.A.N.D.A.S.

All In The Frijoles. Healing With CFS/CFIDS/GWI/PTSD.

One of the most intriguing aspects of healing with CFS/ME/GWI/Autism/Lyme is the clear observation that Western Medicine alone will not fully help to heal these diseases. At this point, we do not have the luxury of   “a cure”,  yet we do have the possibility to heal.

 Healing with these diseases is allot like cooking. It is just not ONE thing that will work. In cooking, it is the combination of  ingredients in a dish that makes it go “WOW”.  In our illnesses, there is  no “Ah-ha” moment with a singular healing tool.  To make matters more complex, every patient is unique and needs individualized care.

We know how to treat  and combat the viruses  (HHV-6A, EBV, CMV) and the plethora of infections (See Previous Blogs)  in patients;  but do we know of other tools that are proven to help heal?   YES!

Our familial  healing journey began  3 years ago when Blake was placed on Valcyte. Equally important, prior to starting Valcyte, it was strongly  recommended that he change his diet completely and to report the percentage of  improvement from a diet change alone. The improvement after changing his diet was a definitive 10% improvement. The diet change involved eating “NO”  dairy,  wheat or sugar;  rotating animal proteins at 4 day intervals  and  never  eating a  starch with a protein.  No  packaged  foods  allowed.

We then began the evolving  educational  journey of learning  the importance of  ATP and mitochondrial function within our bodies and  how  critical  of  a role  food plays  with  these cellular  functions.  Nutrition is more than  just  “feeding a body”,  it  is  a complex system involving  a  science designed to allow a body to function.  This complex system promotes repair and healing. Patients with compromised systems need all the help they can get.  Understanding  how  to  nourish  your  cells  for  optimal  nutrient  absorption can  greatly  help a  patient  during the process of  healing.

 It was a wild diet change for Blake who grew up eating meat and potatoes on a ranch. Homemade bread and pies were ALWAYS at his fingertips. At 15 years old Blake was 6’2″, his shoe size was a 13, he weighed 186lbs, was playing 5 sports -varsity level.  He was getting a 3.5  gpa school average.  Diet and nutrition were never an issue for Blake.

 The Nutrition aspect of Blake’s life changed drastically when he;  became ill,  bedridden,  immunocompromised then had a near death experience with this illness.  It was only  after  having dropped nearly 56 lbs, having shrunk 2″ in height, having shrunk 2 shoe sizes, having lost the ability to read or write,  having lost the ability for mobility,  having lost normal vital signs and being bedridden on/off consistently for nearly 5 years that nutrition became a major player for our plan to heal.

 We did as the Doctor recommended.  We began a journey with nutrition that is still evolving.  After 6 months on that strict diet, Blake began adding foods back into his diet.  Three years later, he chooses not to eat anything packaged;  he eats dairy,  wheat  and  sugar  sparingly.

 Blake was also tested for nutritional deficiencies through the Spectracell Blood Assay test.  He was prescribed an enormous load of vitamins to make up for what he was lacking (according to test results).  No matter how well Blake ate,  at that point his body was unable to absorb nutrients he needed by eating alone.  The Vitamin regime was expensive but necessary.  I still consider this tool one of the best  available in combatting these diseases; especially when wasting syndrome is involved (Cachexia).

 As a  young adult patient, stepping up from Junior College, then moving residency and attending University level courses in a new town was stressful  for Blake this past Fall Quarter.  He missed 4-5 days of class during a 9 week period, then crashed one week before finals.  He was bedridden for 7 days straight. During this  “crash”  before finals;  he dropped 10lbs in a week, battled a bronchial infection which went into pneumonia,  his back went out and he was unable to read, write, think or cope.

Luckily, we had a great Ex-CDC employee as Director of  The University Medical Clinic and she recorded the week-long crash diligently. She treated Blake with compassion and great care, seeing him 3 days in a row. Medical records showing  the patients weight loss, vital signs decline and onset of infections is crucial to proveand document  how severe these episodes are.  Finding the right doctors take time.

 The craziest part of a patients life can be during a “crash”.  One moment, all is well.  The next moment,  all goes horribly wrong.

Being a strategist,  I’ve taken a tactical approach. I have this “attack before the illness takes my son down  button”.   As soon as Blake shows signs of decline,  I  am “ON IT”.

 Preceeding and during a “crash”, Blake  becomes belligerent. He  thinks (dreams) he  is still  an athletic and brainiac hero thus is able to overcome any stress, crash or infection coming on. This is a common attitude amongst young patients.  Me,  I know the truth.  I’ve lived the reality of this illness as a patient and as his caregiver.  I’ve been dealing with this disease for 30 plus years in my own body and I have enlisted myself  to combat it in my son’s body.

At times,  dealing and healing with this illness,  reminds me of a war zone.  Yet,  if there is one thing I am programmed to do; it is to strategize and fight. I grew up in a competitive, strategic and industrialist  environment  and  my  tolerance  for  quitting  is  ZERO.

Avoiding stress and anxiety when possible is a  MUST.  If there is a known physical or mental situation or  trigger; we avoid it.  Life happens,  stress happens and at those times we do our best to re-direct and move on.  It is important to get enough sleep, to see a counselor if needed, to keep anxiety levels at a minimum and to manage pain if present.  It is vitally  important to calm down all of the affected systems in order to lead any quality of  life.  We use medication and holistic tools in tandem and on an “as needed” basis.

I was recently researching a food dish using Mung Beans.  I was curious as to the Mung Beans familial relationship with Frijoles. I knew that Frijoles were a cultivated bean for food source. I wondered where Mung Beans were from,  how they were grown or how they were related to the Frijole. During my research,  I discovered that the Bean family derives from the Latin  Phaseolus which means Wild Bean.  Considering that I was cooking  a dish that was related to the original Wild Bean  on  Earth reminded me  of  our  illnesses and how they are intertwined on a familial basis.

 CFS/ME/GWI/Autism/Lyme/MS and Epilepsy  are  in the same “family” of diseases.  Researchers know this  and  are  now collaborating  to  prove this  through a  plethora of  specialities. We have an illness that is not a singular disease.  We are part of a family of diseases; which  have  been  overlooked  and  suppressed  for  far  too  long.

 Recently,  I took on a  political  project to  further the causes of these illnesses.  In a recent meeting,  a lead researcher asked me “why”?  I did not hesitate with my answer;  I said  “because this illness messed with the wrong mother“.

 I  was seriously  OK  with being a long-term affected patient,  getting excellent care and coping with my illness.  Yet when my son was afflicted,  I took a hard look at what he and millions of others were suffering with and the amount of suffering endured. Because I have spent so many years around politics; for me to walk away from this political issue would amount to negligence and irresponsibility.  It would be tantamount to watching a baby crawl out in front of a moving vehicle and doing nothing.

I started writing this particular blog about 12 days ago.  Blake has now made it through finals.  He does not think he passed one of his classes and has concerns about continuing  at the University Level.  I have spoken little about the toughest moments of our journey, choosing to stay with the positive.  It seems prudent to mention these “down” times now.  We shall see how this chapter ends,  when this blog is complete.

The truth is,  Blake wants to quit at times.  He wants to give up.  He feels hopeless,  worthless and consistently feels “like an outsider”.  Other young adults his age interact and carry on with their lives in a manner in which he is unable to live.  He is unable to exercise, to carry on a normal conversation when he has neurological episodes, to go out and have fun 95% of the time, to be around  crowds  when  he  has  anxiety  and  to  remember  certain  words  when  speaking.

With time, these behaviors and feelings will  lessen as he heals more. The point is to NEVER give UP,  NEVER QUIT  and  TO KEEP TRYING.  The greatest gift I can give as a caretaker is the gift of  innovation and improvisation. To improvise and innovate are great strategies when the going gets tough.

At some point, Blake is going to have to take on his leadership role and care for himself.  He needs to fight to get back into the game called “life”.   He is nearly ready to take this fight on himself.  Because of Valcyte and all of the healing tools we’ve learned,  I would say he is  close to having complete independence.

Going  from  the “A” game to being a disabled patient is humiliating.  It can wear and tear down the best and the brightest. Will Blake pass his courses this past fall term? Will he be able to recover physically and mentally  from this latest “crash”?  Will he gain the 10 lbs back that he recently lost?  These questions as well  as  his  heart  condition weigh heavily on my mind.

 Blake struggled for 3 years to get from the Junior College to the University Level.  When he  feels beaten down,  he wants to “quit”.  The only tool I know of  to  foster forward movement in a patients life, when all else fails; is the tool called “HOPE”.  The hope that someday life will be better, someday our bodies will be stronger, someday there will be more treatment options and cures available.

Like the famous book of  Dichos, “Its’ All In The Frijoles”,  healing with these diseases is like a perfect pot of beans. No matter how you cook your beans or what type of beans you cook, its’ all about the “recipe”.

Personally,  we’ve gone for the Grand Slam approach and are trying for  90-100% improvement.  How long will it take and will Blake exercise at optimum levels again?  These are questions I cannot answer.  He plans on starting to swim in an indoor pool this summer.  This will be his first attempt at regaining any exercise regime, besides walking to classes.

Days have passed.  The grades are now in.  He missed a 3.0 gpa this quarter by 1-2 points. Blake is holding steady at around a 2.75 gpa  as a Physics/Engineering Major plus  Military Science-Linguistics Minor.

If we dwell on what he cannot do at this particular moment, we lose sight of  “what he can do”.   He now attends a University Level science program,  he drives a car,  he walks,  he is upright 85% of the time,  his crashes last 3-7 days instead  of  weeks or months.  Blake can now read and write.  Its’ taken 3 years,  but considering how bad off he was,  this is a miraculous healing tide.

Immunology will be heavily addressed in Phase 2 of Blake’s Treatment.  I believe  it is  “all in the recipe”  and that for patients with these diseases;  the healing recipe is constantly evolving and  changing.  Blake and I dedicate this Blog to  Dr. Jose Montoya.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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