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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Advertisements

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/

 

 

 

 

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.

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

Code Talkers. Deciphering GWI/CFS/CFIDS/PTSD Diseases

During World War II,  400 Native American Marines were tasked with  the transmission of secret tactical messages.

They developed communications nets using formal or informally developed codes built upon their native Navajo Languages. Their service improved communications in terms of speed of encryption. These Marines were known as CODE TALKERS.

 Code talking, however, was pioneered by Choctaw Indians serving in the U.S. Army during World War I.  The first known use of Native Americans in the American military to transmit messages under fire was a group of Cherokee troops utilized by  the  American 30th  Infantry Division serving  alongside  the  British.

Recently, I asked Blake what he thought about  The  Code Talkers  service to The Military and how he felt about their leadership qualities. His answer was one of honor. He said, “The Navajo people have been forced from their land, then returned to their land, forced to abandon their culture, then allowed to practice their culture, and in addition faced many other prejudices from the United States government. Despite the injustices done, many Navajo enlisted during World War Two, some lying about their age; to fight. Those who did were leaders among their people, loyal to their land and country, exceptional in their duties as soldiers, respectful of fellow soldiers, empathetic to the cultures of other people, honorable in their actions, strong in their integrity, selfless in their service, and courageous in their actions throughout the Pacific”. 

 I was honored to hear Blake speak about this historic Tribal contribution; yet at the same time, I was overcome at the fact that my sons  brain  is beginning to heal.  Blake now absorbs information and is able to read and write with increasingly stable clarity. This is a huge step, as he  had  lost the ability to read and write prior to treatment on Valcyte.

This is an exciting time in the field of  research  for  ME/CFS/GWI/Autism/Lyme/MS and Epilepsy. Yet it is the calm before the storm in many ways. Patients and the general  medical community have  yet to connect  the dots  between  these diseases and realize how strongly they are associated and linked. These links  hold tremendous value for collaboration to move forward towards  discovery, treatment and prevention for all of these diseases combined. Savvy  Researchers now admit that top notch researchers in various different fields of study each holds a “piece of the puzzle” and that if they work together, this puzzle can  and  WILL  be  put together for the greater good of advancement.

 Specialties  across  the board are now involved in collaboration. Even more exciting, researchers  are willing and  are considering more innovative collaboration in the future. Immunology, Virology, Epidemiology,InfectiousDisease, Cardiology, Radiology, Neurobiology,neuropsychology,  Gastroenterology, Rheumatology and Endocrinology all have a stake in the future of our wellness.  It will take many researchers across many specialties to put the pieces of this  complex  puzzle  of  diseases  together.

One of the top concerns at hand is the issue of  testing for viruses and pathogens. We need advanced and definitive testing methodologies for blood and we need human tissue repositories. The key to discovering etiology and behavior in these diseases probably lies in the studies which must be done in the tissue.  The biofilm  holds great  promise for  study as well. These are advanced science technologies which are being  explored  for  future use.

Although testing for viruses  and treating these infections holds great potential for recovery for patients of certain subsets; WE  NEED MORE TOOLS to fight these diseases. Specialized MRI scans are needed, Immune modulators are needed and most of all; more Doctors are needed to practice in these fields.  Patients are suffering  in overwhelming numbers due plainly to the fact that there are not enough Doctors in these fields of studies to treat patients.  I have talked with dozens of the finest Physicians in our disease  fields  and  they all say the same thing. “We cannot get Doctors or even interns to be interested in these fields of study”.  WHY?

This  “Why”  is a present dilemma that ties into one of our major obstacles.  Doctors that practice  in CFS/ME/LYME/GWI/Autism/Epilepsy are thought of as unorthodox. Mainstream medicine still does not accept these diseases into their realm of  medical specialties. No matter how much research we have done or will do to prove these are serious debilitating and life threatening diseases; there WILL remain the social, political and medical stigma associated with these diseases. This stigma will prevent further progress from happening,  despite  proven evidenced based science.

Many patients feel that once the science is proven, the tide will change within the medical communities and treatment will follow. This is not true. Doctors have trained and interned through textbooks and mentors who teach them the opposite of what new research and patients are discovering as truth.  We have an evolving disease that  the  medical  community is not equipped to keep up with.  This is what is known as a Paradigm.  This Paradigm is also far-reaching and has tentacles which are embedded within  businesses and structured systems  that profit greatly  from this  Paradigm existing “AS IT IS”.

A Paradigm shift will take enormous political power, it will take  mass numbers of voters and it will take proven science, proven  legal grounds and unique  political tactics to create a radical shift.  The greatest  gift we have to offer,  is that this  inevitable paradigm shift  can  benefit not only patient’s;  but the economy, big business and the government interests as well.  Like all paradigm shifts, the focus is on sustainability.

During World War II, the military needed a way to communicate, without the enemy picking up on their intentions. This lead to the development of the  code rooted in the Navajo language.  The Navajo language was used because it was something that  was  new to the enemy. The Japanese had  never  encountered the  Navajo, or their  language, thus  it was impossible for them to comprehend; let alone decipher.

We need to invent and  implement our political  strategic code in order to create  a  National Political Campaign to gain movement towards Research, Discovery and Treatment for our Patient Populations.  After 5 years of intensive research on these diseases and cold calling every advocate, Physician, researcher and  patient that would talk to me;  I came across an interesting observation.

Through our intensive research, we  found that the vast majority of  patients of these diseases have not been accounted for, nor written about nor even noticed. It will be these overlooked patients  that will change this psycho babble  game dubbed by the CDC as “the yuppie flu” and “Blue Mono Man Syndrome”  into a full-fledged recorded Pandemic.

I encourage anyone with the symptoms listed in our prior blog titled “Getting Intimate With Your Viruses” to get tested immediately for the viruses and pathogens that are known to exist in our patient populations. I encourage all Soldiers and Veterans to get tested for both the viruses and bacterial  infections  listed.

 Lyme Disease has made  enormous leaps and bounds, however, there is little to no information being published by Lyme experts on the importance of testing  for tick borne pathogens AND  testing for the reactivation of   HHV-6A,  EBV and CMV viruses. A Lyme patient cannot assume that by treating their bacterial infections alone,  long-term improved health will occur.  These patients lives are at risk, they need to be tested for the viruses that reactivate under the stress of the bacterial infections.  They must  be  monitored and treated for both bacterial and viral infections. This is a pre-cautionary step that has thus far been under utilized.

Political Action takes a concerted effort by professionals qualified to participate in local, national and international politics. Finding a political law firm to take on our case across these diseases has not been accomplished in the past 50 years. As of this moment, that has changed.  We now have formed a Corporation to make  headway to take the political  action needed to support the research and patient  populations  of  these  diseases.

During these trying times in our communities, many patients and families have lost hope and faith;  that there will be progress, that there will be advancements made, that there will be clinics and treatment centers for substantial and viable treatment. We are facing  a steep climb for success. Yet against all odds,  I have faith  in  those  that  have  the  best  intentions  for  us  as patients.

I met with a wise man the other day.  I am about to embark on an important journey for our cause. The wise man told me to “watch for the person who is the quietest in the room. He told me that often times, it is the person who makes the loudest noise , who has the least amount of  influence”. It  is  with  these  wise  words,  that  I  begin  Phase 2  of  this  political  journey.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

BLAKE UPDATE

We will be reporting on Blakes’ recovery progress in December. Good news to follow……..

Gaining a Perspective on CFS/CFIDS/GWI/PTSD. Exiting The Dark Ages of Our Illness.

GWI/CFS/PTSD  are known as  “Invisible Illnesses”. This means that on average, when out in public, the patient may look well enough so that doctors, family members and even friends do not think or believe that the patient is seriously ill. This is a trick of nature. A camouflage. Although we live with a covert illness, in no way do we as patients  fit into normal society. As a result, some of us learn to hide our illness, which makes for less scrutiny and criticism. This may be an invisible disease to the majority in the Medical, Political and Societal realms; yet it is truly a Visible War for the patients, doctors and caretakers whom are a part of this. Most patients are anything but “well” 50-100% of the time; and most Never get to “feel” better than a 3, on a scale of 1-10. Without Medical Treatment, Patients are left to endure a life of constant suffering.

Following the decline of The Roman Empire, Western Europe experienced a period of cultural and economic decline and disruption known as The Dark Ages. In the 1330’s, an Italian scholar named Francesco Petrarca, known as Petrarch, developed the concept of The Dark Age. The concept was intended as a sweeping criticism of Post-Roman centuries as “Dark” compared to the “Light” of Classical Antiquity. The times lacked of Latin Literature and contemporary written history, there was a general demographic decline plus limited building activity and material cultural achievements in general. The Dark Ages spanned the era between the Fall of Rome and The Renaissance. Petrarch said of the times “Amidst the errors there shone forth, men of genius; no less keen were their eyes, although they were surrounded by darkness and dense gloom.”

The CFS/GWI/PTSD Dark Ages have spanned the past 30+ years. When a disease is first noted, often times the etiology is “unknown” for some time. Thus, the medical and societal communities at large tend to discount some new diseases as “psychosomatic”, due to lack of understanding. It is human nature to “put down or discount” what is unfamiliar or uncommon. Society at large says, “How can one validate what they do not understand, cannot see or can not empathize with?” Societal Norms, Paradigms and our Belief Systems tend to lean towards concrete, substantiated proof based on scientific data. The average person cannot cope with the “concept” of the disease at hand, until the etiology has been determined. If the causation and etiology can not be fully understood; then there needs to be evidence based published scientific studies proving diagnosis and treatment protocols.

Looking to the past, we can find similar medical and societal nightmares that occurred for other patient populations of some well-known diseases. Before etiology was known, AIDS was originally called “Gay Hysteria”, Freud called Multiple Sclerosis “Female Hysteria”, as both were considered mental conditions; and certain types of Leukemia were once thought to be ”hysteria”. CFS has been discounted in cartoon strips as “The Yuppie Flu” and patients have been labeled as malingerers, psychotics and neurotics.

 It may be safe to say that any new disease with unknown etiology that affects the Central Nervous System may be labeled as a psychosomatic syndrome, instead of a disease that is affecting the central nervous system. I hope this barbaric attitude changes, not only for our diseases, but also for future diseases that appear. We are in the Age of The Virus; more serious diseases with unknown etiology are likely to appear. It is criminal behavior to discount patients with a serious, life altering biological disease.

Most of us are familiar with the Incline Village CFS Outbreak (1984-1989) involving 259 known patients. Prior and after that, there have been around 50 outbreaks recorded around the Globe. In addition to these smaller outbreaks, two large Outbreaks have been recorded as well and largely ignored.

The Los Angeles Outbreak (1934) occurred at Los Angeles General Hospital and was the 1st suspected CFS outbreak ever officially recorded. 200 members of the hospital staff contracted the disease and over 50% of them remained unable to work 6 months later.

The Royal Free Outbreak (1955) occurred in The UK and may be the largest scale CFS outbreak ever recorded in The UK. Occurring over a 4-½ month period beginning in the spring of 1955 with a few people. By July of 1955, the outbreak grew to over 300 members of the hospital staff and the hospital eventually was closed down until October of that year.

These recorded outbreaks were “not enough” to substantiate CFS as a biological disease. It would eventually take concrete scientific data to disprove the mental syndrome labeling. Eventually, it was scientifically proven that two factors must be involved for  CFS to occur:  1) a genetic predisposition PLUS  2) a virulent trigger.  These 2 factors alone prove this is a biological disease; not a  mental illness.

We now have scientific data proving that viruses involved and  linked with  CFS/CFIDS and possibly GWI and PTSD can  infect cells of the immune and neurological system and are capable of causing latent infections and reactivating under certain conditions. We have proof of increased allergies to food and medications, inflammation to the central nervous system, inflammation to the brain, immune dysfunction and viral reactivation; all of which are involved in part or together. Other proven factors/symptoms that can be present are Neurally Mediated Hypo tension (NMH) and Orthostatic Intolerance (OI), both of which are considered to be directly caused by viruses. Serious sleep disorders which cause lack of deep sleep that the body depends on to perform cell repair each night alters the body’s restoration process; directly resulting in insomnia, sleep disturbances, fatigue and physical and cognitive decline. Scientific data shows that certain subsets have cardiac involvement that can result in heart damage as well as heart failure under certain circumstances in certain subsets. Graded exercise was once a prescription for patients, but is now thought to be harmful or even fatal for those with certain types of cardiac involvement.

Exiting the Dark Ages of CFS/CFIDS  we have garnered enough information to begin to understand these diseases and to move forward towards targeted Biological Research that will move us towards Diagnosis, Treatment and Prevention.

In CFS  alone,  Approximately 3  in 1000 people are afflicted. 47% of the diagnosed patient populations are disabled. It is 3-4x more likely to afflict women than men (similar to MS and Lupus statistics.) There are at least 1 million cases diagnosed in the U.S. and up to 17 million projected worldwide. It is Theorized that there are approximately 3-4 million  cases undiagnosed in the U.S. alone. Only 1-3% of patients recover fully without medical treatment. To go from CFS to the virally induced subset of CFIDS; it is believed that the patient experiences the original triggering event; then 1) immune activation occurs; 2) cellular dysfunction occurs; 3) viral reactivation occurs.

With the discovery of the viral links and involvement  of  HHV-6A, EBV and CMV plus multiple Pathogens to CFS/CFIDS and perhaps in GWI/PTSD,  we now  have an understanding of  what biological research to focus upon.  For certain subsets affected by these viruses and pathogens, treatment options may be more advanced and available than other subsets. For example, we know that there are at least two subsets. One is viral induced with chronic viral reactivation (approximately 60-75%) and the second subset shows no reactivation of viruses present (approximately 25-30%). Right Now, we know that the viral reactivation subset has the best chance for successful treatment using antivirals.

It is with our hard earned knowledge and scientific studies that have and will be conducted that we are able to move toward the Light and away from the Dark Years of CFS. Although we as patients are in the midst of exiting our Dark Ages with this disease, “no less keen are our eyes, although surrounded by darkness and dense gloom”.

What needs to be done and what will be done are yet to be seen. However, radical changes and the potential for progress are now set in stone for all  patients. It is only a matter of Time, Advocacy and Scientific Studies before we are completely out of our Dark Years and into the Light Years with our diseases.

Julia Rachel

VERY Lucky Girl on Valcyte

Living with CFIDS. Wonder Woman.

Wonder Woman

It came naturally to choose Wonder Woman as a theme for the 1st Blog posted on VLG on Valcyte.   Helplessly watching my son Blake being bedridden for 5 years through the prime of his youth, taking 20+ specialists to diagnose him. Then, the realization and confirmation that I myself have been diagnosed with the same insidious disease. It takes a Super Hero to deal with CFIDS and the effects of having HHV-6A, EBV and CMV Viruses. The debilitating chronic fatigue causes decrease in quality of life and disability in many cases. The headaches, weakness and the entire other plethora of symptoms make CFIDS  complicated and hard to diagnose. It is no wonder that it is such a difficult monster to diagnose and treat. Hence, enters Wonder Woman. Be it the mother, grandmother, sister, wife, cousin, girlfriend, fiancé or friend; if you are supporting a loved one with CFIDS, HHV-6A or EBV you are a super hero.

 It takes super hero strength for the patient to go through the trials and tribulations of this nightmare. Being on both sides of the fence (both patient and caregiver), I realize it takes hero strength to support the patient as well as being the patient. Thus, I honor all of you out there who are care taking and/or supporting the patient. When ones’ life changes drastically due to illness, very few “outsiders” can recognize and support the emotional and physical journey the patient goes through while his/her life slips into the hurricane path.

 HHV-6A affects the mind as well as the body. With its’ toehold stemming in the brain, cognitive decline ensues. One becomes unable to focus or concentrate and can be quick to anger. Blake was the most amiable boy and young man, until afflicted with this disease. Dark moods and thoughts and a temper reared its’ head, eventually leading to self-destructive behavior. What is amazing for me to see, is an extremely athletic young man who played 5 sports first string and who LIVED to go to school and learn, then become a distant, reclusive person who could not gather the strength to get out of bed for months at a time. What kind of disease could produce such a broad range of symptoms crossing the barrier from physical to psychological?

 All diseases have their titles and their impacts, thus our modern medical community and society have placed a “rating” on each disease. CFIDS have been given a poor rating up until now. Very little was known about these diseases hence they were discounted greatly. Yet, with the new Viral Infection links (HHV-6A, EBV, CMV) to CFIDS, Dr. Montoya at Stanford University and all other ensuing studies using antivirals to fight these infections are making great strides in the goal of treating CFIDS.

  I could be angry when I think of what some of the doctors/specialists/schools/teachers/”outsiders” said to us about Blake and me. The looks, innuendos and outright language saying “get over it, get out of bed, take an anti-depressant and move on with your life. Get counseling, it’s just that you are stressed, nothing is medically wrong with you.” However, I smile when I recount the journey.

I smile because I knew inside and never stopped fighting for my now 21-year-old son. I smile because I am an athletic female that could out swim (backstroke), out ride (horses), out sail, out fly and out drive (race cars) any of those “people” who advised me “to get over it”.  I smile because I know Blake could out run them (he is fast), out Jump them (center in basketball), out pitch them, out snow board them and they would definitely pick him first for their football team (wide receiver).  I also smile because CFIDS, HHV-6A and EBV are on the forefront of modern medicine.

As patients, we are about to provide extensive case studies to help in the cure of  multiple “fashionable” diseases such as MS, Lyme and Autism. We are on the verge of having groundbreaking insight that viral and bacterial  infections may be a crucial link to the cause of many diseases.

 You see, we truly are super heroes. Whether you are male or female, or whichever super hero you identify with, I commend you for supporting or being the patient who lives with CFS/CFIDS.

Julia Hugo Rachel

Very Lucky Girl on Valcyte