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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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              “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

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.

This is NOT a Bull Fight! OR IS IT? CFS/CFIDS/GWI/PTSD

 In Spain, Bull Fighting traces its’ origin back to 711 A.D.   Nearly one million Spanish Citizens flock to watch bullfighting every year.

Originally accomplished on horseback by the Aristocracy, the sport changed to that of the commoners in 1724. Since commoners could not afford horses, they developed the art of bullfighting on foot, unarmed.

The start of the Fight begins by the sounding of  a Trumpet. Picadores enter the ring and engage in about a 10 minute ritual. During this ritual, spears are thrown into the Bull to weaken him. The trumpet sounds again and in walks the Matador.

There are more “players” in the Bullfighting ring in modern times. There are the Picadores (Lancers) whom are mounted on horseback. The Banderilleros (Flaggers), The Mozo de espada (Sword Servant) and the Matador.

In the final stage of the Fight, the Matador does a spectacular “Dance” with death as the crowd shouts “Jole!”  Then the Matador kills the Bull.

Bullfighting, although part of Spanish tradition and culture, is criticized by many animal rights activist groups. If the tradition of Bullfighting in Spain has raised such awareness for such activist groups as StopOurShame (SOS), I cannot help but wonder why our  Viral Issue and co-related diseases have escaped the art of Activism.

Could it be that we are in a Bull Fight in which The Picadores have thrown their spears into us and we have yet to be slaughtered? Or are we about to begin a new wave of advocacy called Activism?

The “Charging Bull” is a 7100lb bronze sculpture that stands near Wall Street in New York City. An artist named Di Modica spent over $360,000.00 to create, cast and install this sculpture. Following the 1987 stock market Crash, this Bull was to be a symbol of  “strength and power to the American People”. Di Modica created “The Bull” as an act of Guerilla Art. On December 15, 1989 he positioned the massive sculpture beneath a massive Christmas Tree in the Middle of Broad Street in front of the New York Stock Exchange. Di Modica handed out flyers about his art and gave the sculpture to the people of New York as a Christmas Gift.

The Police SEIZED The Bull and placed it in an impound lot. A public outcry ensued which Led the New York City Department of Parks and Recreation to install “The Bull” back onto the streets of New York! The Bull was placed 2 blocks south of the New York Stock Exchange. The people in this instance, went from advocacy to activism to achieve bringing The Bull Back. They did so “with unity of purpose”.

You cannot buy unity. You cannot enforce unity. Unity has to come from a sense of passion for a united purpose. To push or proselytize will not be effective methods for bringing awareness or advocacy. The “hard sell” in not necessary to achieve a groups end goals.

If we look towards activism, it might be prudent to look at other models of success. Some of these models can be seen in Coups, Revolutions, Battles and other Activist Groups. We are in the age of heightened social media tools which are at our disposal. However, it would be (and has been) a vast mistake to think that any advocacy could be a success without “on the street” campaigning.

The recent Coup in Egypt was successful in part to the efforts of the AGYM.  AGYM has been cited in The New Yorker as well as Wired  as being so successful in their movements, due to their use of Social Media Tools.  AGYM has fervently made it clear that “using social media tools like Facebook, Twitter, You Tube, etc. were extensions and traditional forms of interactions, NOT replacements”. Their point being that the BULK of their activism work is done “on the streets” by traditional means. (Flyers, Posters, WORD OF MOUTH,  Organizing Protests, Campaigning at Universities and Engaging with Neighborhood leaders.)

 Modern Activism takes Street Action, Social Media Tools and Political Lobbying to achieve a social and political movement. Be it The Arts, The Sciences or with a Health Issue; you must use Political Lobbying in a democracy to further your cause.

Many Governments have laws they will choose to enact to strengthen their security apparatus; should they need to. This is why it is important to strategize for a Peaceful Social-Political Movement.

Strategic Planning and turning our weaknesses into strengths only enhance our chance of voicing and winning the Fight For Our Cause. The extension to this arm is the realization that we need to do this in mass numbers. Infected Military and Civilians have both been left to suffer. Suicide rates amongst Soldiers now out number deaths in Combat. (For the past 2 years.)

 HHV-6A   is a  stealth brain virus that can be capable of inducing mania in a sane human being; under certain reactivation circumstances. This may be the most hideous and scary aspect of our illness. The fact that it could be Anywhere, Anytime, Anyone who could be hit with these viruses is frightening. The fact that a Normal, Healthy, Intellectual, Athletic, Strong and Stable human can revert to suicidal tendencies after being afflicted  is horrifying. This is across the board demographics in that it targets Pediatrics, Males, Females, Youth, Middle Age, Geriatric, Civilians and Soldiers.

Patients are being diagnosed with psychiatric or psychological disorders when in fact there may be an underlying biological Issue. It is cheaper and easier to diagnose an epidemic as “psychosomatic”. (CDC’s ruling on The Lake Tahoe Epidemic.)

 Some of the pathogens that piggyback with HHV-6A are defined as “Stealth”  due to their opportunistic behaviors.  Many people across the Globe are stumped by these diseases and the fact that CFS/Lyme/GWI/Autism are spreading at an alarming rate.  Belgium, The UK, China, Japan, The Netherlands, Europe, Australia,  New Zealand and many others are all wondering the same thing. What IS GOING ON?

So far, we know that we are dealing with an infectious disease. If this is 100% the case, then why are people who don’t touch, don’t live together, are neighbors, in the same church or just live in the same community contracting these viruses? This leads me to believe that there could be a “contagious”  period at some point.

In the book  “The Thirteen Bankers: The Wall Street Takeover and The Next Financial Meltdown”,  by Simon Johnson and James Kwak; the authors identify why this current financial crisis on Wall Street has occurred. From Banking and Housing Policies to deregulatory ideology and Wall Street Political Influence, the authors diagram the unfolding.

Political Influence is the “Tipping Point” for all of us with CFS/Lyme/GWI/Autism and every other disease. If the tipping point for us as a collective patient whole is political influence, then it would be safe to say that advocacy, activism and political lobbying might get us the funding we all want and desperately deserve. Funding EQUALS Research which equals  Diagnosis, Treatment and Prevention.

I was told the moment I stepped foot on a Cattle Ranch,  “NEVER turn your back on a BULL”.  To this day, those words ring true in my ears and I follow them implicitly.

WE ARE NOW THE BULL. Yet we have been weak and viewed as such; thus  Backs have been turned on us and we have been left to suffer. We have a choice.  We can stand in the arena with SPEARS in our back ready for slaughter. We can progress towards a United end goal. Frankly, I am not waiting for that “Second Trumpet”  to signal my FATE,  I am heading for the end goal.

GODSPEED.

JULIA  HUGO  RACHEL

VERY LUCKY GIRL ON VALCYTE

GWI/CFS/CFIDS/PTSD. The Heart of Our Fight.

At The Heart Of Our Fight is all of the players whom have been involved in this illness over the past 40+ years. The progress we are about to experience in regards to awareness and political-medical-societal change would not occur without all of the work that the Doctors, Scientists, Researchers, Groups, Patient Advocates, Alliances and Patients have accomplished around the World. It is obvious to me that this team of CFS/Lyme/Autism/GWI is Uniting and going forward.  It seems to me that everyone in this illness wants change and they want it now.

The only way I know how to change from the underdog to the winner; is to use Politics and the voice of the people; The Voters. Another way to inflict change is to go straight to Legislation.

If a governmental agency is not doing its’ job, then it is prudent to go to the Agencies oversight regulating entity. If the Oversight Entity is a Governmental Agency and does not do its’ job, then Congress must intervene. If Congress intervenes and the oversight entity does not adhere to what Congress has mandated, then The President can intervene.

There is an entire realm of Political Action that has never been utilized to date for these diseases. In order to make use of this political power, there must be a strong and unified force supporting this action.

 Our voices have not been heard in part because we have not had the strength of scientific knowledge backing us nor have we had the political strength to back us. Now we have enough  of the scientific and historic and unified strength to back us up; the time is ripe for change via political action.

It is ONLY through the Viral and Pathogen Links and Associations now known to occur in CFS/GWI/Lyme/Autism  and the  association of these Links with other distinguished diseases that we are going to further our political cause for  research, diagnosis,  treatment and prevention.

One of the Historic Health Ballot Measures to pass was the “YES on 71” Proposition; Californians say Yes to Stem Cells. This was an exceptional victory for Stem Cell Funding both on the State and eventually a Federal Level. Fueled by the Love of His Son who has Diabetes; Robert Klein helped to finance and assisted in writing this initiative. At that time; The Stem Cell Transplant was even more of a highly controversial and hotly debated issue than it is now. It took 87+ Million Dollars in Campaign Fundraising to get Prop 71 passed. The result was 3 Billion Dollars in funding over a 10 year period from The State alone. After this victory, the Federal Funding for Stem Cells began to improve.

At the Heart of This Fight for this patient population is the matter of our well being, the well being of our children and the well being of humanity. We are fighting to prevent a worldwide Pandemic. We are fighting for a cause that has refused to be heard. It is up to us to demand that we be heard. It is also up to Civilians and Military Patients afflicted with GWI/CFS/Lyme/Autism  to collaborate to ensure that all patient groups get treated.

Over 100,000 disability claims are reported a month to the VA. If even 25% OF THESE CASES get diagnosed as CFS/GWI/Lyme;  then this is already an epidemic and quite possibly we have let this spread beyond what is currently being predicted.

Blake and I have had vast improvements on anti-viral treatment with Valcyte.   We instinctively realize that we need phase 2 of treatment; possibly phase 3 for Blake. We knew the Valcyte was a necessary stop gap measure for The HHV-6A, to try and lower the EBV and to stop the CMV in me which has caused damage.

Many people think of CMV as affecting the eyesight only. This is a phallacy as CMV can cause High Blood Pressure and affect other organs such as the lungs and liver.

Blake was nearing admittance to the Hospice Program for CFIDS around 26 months ago. He had gone from 6’2″ to 6.0″; his shoe size shrunk from a size 14 to a size 11-12. He went from 180+lbs to his lowest at 135-140 lbs. He went from a 3.75 GPA to a 1.87 GPA and dropped out of College. He was bedridden on/off for nearly 6 years. He completed his High School diploma on a Home Health School Program, then eventually through the Alternative School. He experienced profound and debilitating fatigue with un-refreshed sleep, migraines, sensitivity to light, severe night sweats, ringing in the ears, vertigo, severe Orthostatic Intolerance, muscle weakness, joint aches, severe heat intolerance, panic attacks, anxiety attacks, withdrawn behavior, depression, suicidal tendencies, near complete cognitive decline (he was put at 1% of physical and cognitive abilities.)

Blake had played 5 sports first string and snowboarded black diamond runs. He became intolerant to physical exertion. During sports, he started losing his balance, he became dizzy when trying to catch the ball as a wide receiver under the lights of the field, he started clutching his chest in agony as he ran and eventually he began vomiting blood when he ran. He refused to quit track until he collapsed after a race at the State Finals. He used the hall walls to balance, was unable to stand up when showering and would stay in bed for weeks to months at a time. At the age of 19, he was unable to drive a vehicle safely. I was on suicide watch 24/7 for 2 years with Blake. I am aware of two occasions where I prevented him from committing suicide. I was determined to force him to live, when he wanted to give up. It is hard for Adults to get ill, harder for Soldiers to get ill, yet I think it even hardest on the Pediatric Group.

After 24 months’ on Valcyte, Blake is now Cognitively  60-70% better. Although he gets a 3.0;  he says he fumbles and is still noticeably deficient cognitively with simple mathematical tasks; especially when he is tired. We have found that mental pacing is as important as physical pacing. He will decline immediately if he overexerts; however his recovery time is 2-4 days on the Valcyte as opposed to 3-6 months prior to beginning treatment.

Blake is still unable to exercise or walk too much. He  is up and around every day; excluding crashes. He makes it to his school classes 80-90% of the time. He is more social. He is more coherent. He is able to walk through the airports to catch flights now; whereas we used to use a wheelchair for the distances. An incredible step is that he now lives independently at our Ski Cabin. He no longer needs 24/7 care; although he does need around 80 hours of assistance per month for chores, paperwork, medical travel, etc. He is still not capable of driving long distance nor could he cognitively traverse travel alone.

He does not have the extreme phobia of crowds and central nervous system overload with over stimulating situations (severe anxiety.)  Yet, he remains guarded and cautious to avoid too many of such situations. He practices self care a majority of the time. He fixes at least one of his own meals per day. He has grown 1.5″ since starting Valcyte and is up to holding steady at 160lbs.  His shoe size is now a 13.

 Blake’s EBV titers: (on The Quest Lab Scales) The EBV-VCA is dropping. The EBV Nuclear are still too high to measure progress accurately at this point. His levels began over the highest measurement scale of 5; they have waivered up and down to about 4.71, then back over 5 again. This still may be an improvement because we do not have the technology to read levels greater than 5; so theoretically speaking he could have started out with levels that were 7 or 10 or 30 when he started the Valcyte.

 The HHV-6 is wavering. They went from 3X positivity to 1x positivity, then back to 3x positivity after a relapse and after going off the vitamin regime. These HHV-6 levels seem to reactivate with stress and infections (he has had Pneumonia several times.). DHEA is nearing normal after daily supplements of pharmacy compounded DHEA Sulfate of 35mg per day.

Julia Update

Due to Major surgeries and post surgery infections my EBV and HHV-6 viral titers and updates will not be available to publish for another 3-6 months.  I will say the viral titers for both dropped significantly over the first year. I have now been on Valcyte for 18 months. My CMV was over the highest measuring limit and it is now within normal range. Like Blake’s, My HHV-6A and EBV have fluctuated during stress, injuries and illness that have occurred secondary to my CFIDS.

There is no doubt in my mind that Blake and I have the same illness, but that it acts differently in both of us.  Sometimes I wonder if Testosterone is a player in this maze of debilitation in the Pediatric Group or a Subset.

The stealth  opportunistic Infections that piggy back with theses viruses can cause illness. Micoplasma  can cause liver function abnormalities, nausea, diarrhea, headaches, migraines, fever, rash and prolonged fatigue. This microscopic organism has no cell wall and is the smallest free living bacteria. Like the virus, it depends on its’ host for survival. Due to the small size and lack of cell wall this microorganism can infect a great number of cells in any part of the body and live as a parasite on the surface of the cells. Because there are no cell walls present, immune cells cannot see them; thus infected white blood cells are not killed, but rather disabled. This results in the immune system being under the false impression that there are enough white cells in circulation. This in turn leads to both under and over activity of the immune system, both of which cause problems.

There are many different species of Micoplasma and these have been linked to as a direct cause or significant co factor to many chronic diseases including CFS, Arthritis, Lupus and Candidiasis. Once Micoplasma becomes parasitic in the cell, morphologic and physiologic changes develop and it takes on the appearance of various diseases. It can also invade cells promoting chronic infection which can be difficult to eradicate. Many chronic diseases may prove to be due to infectious bacterium which transform in to the Micoplasma state in order to better adapt to the body. Recently, Micoplasma has been discovered in diseases such as Gulf War Illness, AIDS and certain forms of Cancer. Its’ been associated with Fibromyalgia, Psoriasis, Urinary Tract Infections as well as many other diseases including CFS.

Cytokines are basically immune modulating agents. Biochemists are researching and debating which cytokines and hormones should be labeled which on the molecular level. We know that the IL-6 Cytokine is well defined and known to increase in concentrations up to 1000 fold during an Infection or Trauma.

TNF is a cytokine involved in systemic inflammation.  The primary role of TNF is the regulation of immune cells. TNF is capable of inducing apoptical cell death, inducing inflammation and to inhibit tumorigenesis and Viral Replication. TNF has been connected with numerous diseases; it has a number of actions on various organ systems, generally together with IL-1 and IL-6. Local Increase in TNF causes inflammation. Low Concentrations of TNF can cause Cachexia; a wasting syndrome.

The nuances of these  diseases are complex and they change with each subset within each disease. However,  getting intimate with the viruses and pathogens we have tested positive for and trying to understand the roles of Cytokines, Hormones and TNF all help me to better understand and cope with what has happened to my body as well as my sons.

As CFS/GWI/Lyme/Autism patients, change is one thing we have gotten used to. Change in Lifestyle, Change in Families, Change in Jobs, Change in Beliefs.

The Heart of Why We Fight is to Change Our Conditions. We can do this by learning about our illness, sharing this information with each other and Uniting Politically to support all of those who are trying to treat and cure us.

Blake wrote a poem about change the other day. He wanted to share this with you.

Change:
It falls from great heights
It pools and collects and forms
Then sinks, sinks to its lowest point
But as it sinks, it rushes forward
Eroding away the rocks
Sweeping away the trees
Falling off the edge of perceivable worlds
To fall with great force and still have the motivation to continue
To flow rapidly till the point of expanding
Building deltas that support unity and life
And finally it spills into a vast ocean
That’s movement is constantly determined by the Moon

26 months ago, Blake would not have been capable of producing this poetry nor would he have wanted to share. The fact that he is opening up, improving and showing a desire to write on this blog in the future; gives me great hope for both his and my future prospect in battling this disease.

At the Heart of Our Personal Fight with battling these viruses and pathogens, we decided to go on Valcyte. I know in Blake’s case, that this decision saved his life.

 
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

Examining GWI/CFS/CFIDS/PTSD. Getting Intimate with our Viruses. Part #1

As with any  disease with a potential newfound etiology; there are wide variations of treatment options and choices available to the patient afflicted.  In the beginning stages of a disease, we look to the plethora of Scientific Researchers who study  and explore every possible avenue of the disease at hand in order to find viable treatment options, routes and cures.  It is through studying all branches, avenues and options that these researchers are able to narrow down specific and/or possible etiology as well as possible treatments and cures. I commend every researcher, scientist and doctor who has devoted his or her time and energy in the efforts to discover laboratory methodologies, causations, subsets, treatment options and all else involved with CFS/CFIDS/GWI/PTSD As patients, we owe our lives to these Advocates, Researchers, Scientists, Doctors and Groups devoted to our cause.

In the mean time, these separate branches of research can take decades if not longer to get end results. Identifying Disease etiology is a Giant Step; then exploring and finding out what routes to take for diagnosing and treatment are the branches of the tree that are time consuming and full of endless research. Along with research; comes Trial and Error, Successes and Failure. Then if a new drug needs to be created for treatment, the time frame for treatment or a cure increases exponentially.

Word of mouth about possible treatments options, cures and causations have been our primary “Bamboo Telegraph System” for the past 3 decades. This word of mouth system has kept many of us going through the toughest of times. Up until NOW,  all we have had to go on thus far as patients  is through our community based websites and word of mouth. We have been shunned and ignored by most of the medical, societal and familial realms, thus we turn to these support groups for encouragement and information. The lack of trained CFS/CFIDS/GWI/PTSD specialists in the Biological field to treat the millions of  patients of these combined diseases in the United States as well as the tens of  millions of  patients worldwide  is now at a critical point and time.

We now find ourselves at “The Crossroads”.  Viable Scientific studies on Viruses and Pathogens have been published that now give us more hope, more advantages and more options than at any other time in the past with our Diseases. The time is now ripe to get “Intimate” with our diseases. Now is the time for understanding. Now is the time to gain momentum towards lobbying for our disease. Now is the time to really understand what has happened to our bodies; how this has happened and how we can move forward with treatments available right now.

If we are to fully grasp this disease that has taken a hold of our Brains, Central Nervous System, Heart, Organs, Immune and Endocrine Systems and that has virtually destroyed our quality of life; it is time that we get to know this illness on a deeper level. It is time for us to get Intimate with our Viruses. Some of us do not have the luxury to wait another decade; let alone another year.

What we do know for sure is that  a percentage of cases are caused by A) a genetic predisposition and then B) activation occurs by a virulent trigger, a chemical/toxic trigger or a pathogen. We know that there are AT LEAST 2 subsets of CFS disease; if not more. We know that viral reactivation occurs when :  1) immune dysfnction occurs; 2) cellular dysfunction occurs; then 3) viral reactivation occurs of  HHV-6A, EBV, CMV and other co-infections.  It is imperative that the patient understands what subset of this disease they are in, for without this information they are literally flying blind.  It is only through this course of gaining knowledge and power that we can make informed decisions as to what viable  and sound treatment options we choose to go with.

I originally started writing Very Lucky Girl On Valcyte because I felt I was lucky to have been diagnosed and treated for the underlying causation of my Illness, which is Virus and Pathogens Infections.

 I also started writing this blog, because my son had contracted an illness at 14 years of age and by 19 years of age he was about to be enrolled in the Hospice Program and was given a form to fill out by IHSS for his “Last 5 Wishes in Life”. Watching my son, an extreme athlete, a top student, a top gun, and a passionate-handsome, loving and beautiful soul shutting down cognitively and physically ignited me to explore every option, every avenue and every viable scientific possibility for treatment to save his life. Being on 24/7 suicide watches on his behalf for nearly 2 years only made me more resolute to battle this hideous disease. My son was a passionate, fun loving, humorous soul who turned to suicidal thoughts and tendencies in order to escape the wrath of this disease. They say, “No soldier gets left behind.” My motto was and is, “My son does not die on my Watch.”

After 6 months on Valcyte, I knew my main mission was to write this Blog and to continue to explore every avenue, every nook, every crevice,  every sliver and every ray of hope for treatment and recovery from this disease that wipes out and erases entire lives. My heart acknowledges and grieves for those of you who have lost children to these diseases. I am continually saddened by each death I hear of due to these diseases.  I am committed to doing everything in my power to save lives of these patients. My main focus is Pediatrics and Military Personnel. Yet, hopefully through our work; more patient lives will be bettered as well as saved.  More patients will realize when they have been hit by a Virus and/or Pathogen  AND  to get tested if their symptoms PERSIST.

Howard W. Newton once said, “People don’t give a hoot about who made the original whatzit. They want to know who makes the best one.”  This is truth. Whatever treatment option you choose, whatever protocol works for you; make it the best informed choice for you.

The Branches of scientific research of  GWI/CFS/Lyme/Autism and viral outbreaks have encompassed research such as Natural Killer Cells involvement, Viral Reactivation, Tumor Necrosis Factor-Alpha, The Zero sed Rate Factor, Pathogens such as Micoplasma and Chlamydophila Pn., as well as a host of tick borne and rare pathogens.  Environmental Triggers such as   chemical, mold, toxins, vaccines and food sensitivities are equally as important in this research.

We now have VIABLE  SCIENTIFIC  Data linking and associating genetic predisposition, virulent triggers and viral reactivation to GWI/CFS/Lyme/Autism and Viral Outbreaks.

IF YOU GET HIT WITH A VIRUS or a “FLU” AND DO NOT RECOVER SUBSTANTIALLY within the Doctors prescribed frametime, PLEASE GET TESTED FOR THE VIRUSES AND CO-INFECTIONS LISTED IN PART #2 OF THIS BLOG.

 If you have been diagnosed with PTSD  or a TBI and exhibit 4 out of the 6  symptoms below: PLEASE GET TESTED.

If you have been diagnosed with Gulf War Illness and exhibit 4 out of the 6 symptoms listed below: PLEASE GET TESTED. Test codes are listed in Part #2 of this Blog. HHV-6A at 3x positivity or greater plus opportunistic infections are a sign of immunological breakdown. Central Nerovous System Meltdown happens as well. The HHV-6A  is a virus which takes action and causes failure in our Brains.

If you have an Autistic son or sibling: PLEASE GET THE IMMEDIATE FAMILY TESTED.

If you have Lyme Disease: PLEASE GET TESTED.

Once diagnosed with GWI/CFS/Autism/Lyme, the beginning protocol is to be tested for HHV-6A, EBV and CMV Viruses along with all Pathogens specific to the Disease. The HHV-6 tests should be done through Quest Labs or Focus Labs ONLY so that results can  be compared to recent proven published scientific studies that used Focus Labs in the clinical trials; which proved anti-viral treatment works on 70% of a certain subset patients .

 Patients around the world are at risk for a false-negative if tested at any other laboratory other than Quest/Focus for HHV-6A. Major Universities are using their own labs and telling patients they are “negative”. These same patients are then tested through Quest/Focus Labs and are showing up at 3X-8X positivity for HHV-6A.

 Quest Labs will send the HHV-6 tests to Focus Labs directly. If you test positive for HHV-6, a repeat test will need to be done exactly 4 weeks after your first positive test.  It takes 2 positives  at  a  4  week interval apart to  equal a true positive for treatment protocol  standards.

 Most doctors do not  know about HHV-6A  Virus or that Quest/Focus Labs are the Leader in this testing. Very few Doctors have any understanding of HHV-6; the fact that it can integrate by chromosome into the brain and the potentially disastrous CNS and Immune System Meltdown  this Virus can cause when activated above normal titer ranges. We are now seeing HHV-6A to be associated in neorological diseases such as CFS, MS, GWI, Autism, Lyme, Lupus, some forms of Cancer and many other diseases. We are seeing high suicide numbers in Patients who just cannot cope with the massive wrath of this CNS and Immune System illness combined with the effects on The Brain and the lack of medical attention directed towards diagnosing and treatment.

You are a candidate for Valcyte if you have ALL THREE of the Following:

1)  Your  EBV-Nuclear AG IGG is 3X positive or higher.   (The EBV-VCA IGG needs to be done as well, but treatment depends on the Nuclear test)

2) You test at least 3X positive or higher  for HHV-6;  at Quest/Focus Labs.

3) You have at least 4 of 6 symptoms listed below.

The Symptoms are:

1) impaired cognitive Function

 2) slowed processing speed

 3) sleep disturbance

4) short term memory deficit

 5) fatigue (profound fatigue with unrefreshing sleep)

6) symptoms consistent with depression.

This information is according to the Stanford Protocol: Journal of Clinical Virology 2006; 37:S33-38. Your physician can look this study up. You have the right as a patient to ask your doctor to run these blood tests mentioned above and you have the right to receive a copy of your lab results.

 I have listed a copy of the blood test lab codes in Part #2 of this Blog.  If you test High Positive for the CMV virus, then the only known treatment for this Virus at this time is Valcyte. The CMV can cause retinitis as well as  high Blood Pressure. If you have High Blood Pressure, it is advisable to get checked for the CMV virus  (Harvard Study).

Most physicians are unable to read nor understand HHV-6 results, thus they cannot interpret them and are in the Dark. Here is the positivity scale for  Quest Labs:

POSITIVITY IGG AB Titers for HHV-6

  • 1X…..1:10
  • 2X…..1:20
  • 3X…..1:40
  • 4X…..1:80
  • 5X…..1:16
  • 6X…..1:320
  • 7X…..1:640
  • 8X…..1:1280

Many infectious disease doctors are familiar with Valcyte and its’ usage for CMV.  Sales topped 36 Billion Dollars last year for this Drug and it is a well-tolerated and studied drug whose usage is mandatory in transplant patients (Excluding Liver Transplants). Valcyte is also FDA approved for Pediatric Patients.

In addition to the above-mentioned viruses, it is imperative to be tested for piggyback co-infections (Pathogens) such as Micoplasma and Chlamydophila Pneu Panel. These Pathogen  infections alone and/or in conjunction with Viral Reactivation can make  patients very ill.

 Our patients are notoriously low in DHEA-S. Laboratories list “normal ranges”  for DHEA-S  that are inadequate for those of us with CFS/GWI/Lyme/Autism. Young adults optimal range is between 300-790 depending on sex. Adult women’s optimal range is between 160-340. Although DHEA-S can be purchased OTC, it is best monitored by blood tests and a  compounded  prescription written by a licensed doctor for the correct dosage.

 Additional standard  tests include CBC W/ Differential; Comprehensive Metabolic Panels; Testo Free and Total; Cortisol, Serum L: C/MS/MS and of course Lyme disease. Ana Choice cascading reflex test is advisable. The Tumor Necrosis Factor-Alpha is also a definable test as it shows higher in patients and is strongly correlated with Natural Killer Dysfunction. Some scientists predict the Tumor Necrosis Factor-Alpha Test might be a strong indicator test to prove this illness in the future. Normal Range for this test is 1.2 – 15.3 pg/ml. I am at 222.8, which tells you how my natural killer cells are getting along.

It must be mentioned that a percentage of patients who test high and are in need of treatment will suicide with the HHV-6A Brain virus  if they do not get medical attention.  Our military suicide numbers in the past 2 years now outnumber Death in Combat.  GWI is rampant in the Military amongst both the deployed and non-deployed.

 The HHV-6A virus along with the other viruses and Pathogen infections are like a nuetron bomb to our Brain as well as our Immune Systems. Thus, we call these Stealth Viruses and Pathogens.

Getting Intimate with these Viruses and Pathogens and knowing what to test for is the first step towards gaining more knowledge of  the illnesses they correlate with.

I’ve been warned that  “It is not the Valcyte alone that gets the virus it is working on but a combination of both the medication and the body’s immune response in conjunction.” Diet plays an important role in combatting this monster. Environmental Triggers are essential to look at. Physical and mental stressors are damaging on the cellular level and can be life threatensing; this aspect of these diseases is essential to understand how to cope and to progress successfully.  Immune uptake regulators may be essential for certain subsets.

If we get Intimate with our Viruses and Pathogens and determine what we are dealing with; the chance of our personal treatment success is greatly expanded.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE