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

  Ruby

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

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

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

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

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

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

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

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

 

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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

 

 

 

 

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

  • winslow (3)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Paddling for Will. A Beautiful Soul. CFIDS.

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

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

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

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

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

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

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

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

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

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

RIP Will.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON  VALCYTE

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

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

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

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

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

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

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

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

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

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

GWI/CFS/CFIDS/PTSD. Viva La Revolucion.

When one hears the word Revolution many ideas come to mind such as Revolutionary war, Revolution (disambiguation) as well as Revolt.  Revolutions in thoughts and systems have been the ways and means for change throughout the history of humanity.

Revolution can mean many things in many ways to many people. None of these are as harsh in nature as that of Viva La Revolucion: the act of a fundamental change in power or organizational structures that takes place in a short period of time; through armed conflict.

 Since the time of Aristotle to present: political, military, coups and all forms of revolutions have been widely studied by some of the greatest of human minds. Throughout human history, Revolutions have occurred and have varied widely in terms of methods, duration and motivating ideology. Results of these revolutions have included major changes in culture, economy and socio-political institutions.

As  CFS/GWI/Lyme/Autism Patients; we have the choice to create and design a new type of revolution involving peaceful and positive socio-political change. We can do this by using the unified powers of our large patient numbers to influence our established political system. As patients the time is now ripe to strategize, to form political entities and to lobby for our cause. It is time to Organize and it is time to get Political.

A huge challenge for us as patients is to not get stuck in the past with anger and injustices at our situation but rather to look towards the future for innovative ideas that will further our cause for treatment and cures. We cannot afford to spend another 30+ years stuck in the dark ages with these diseases.

 It is time to re-group and focus on the obvious.  We Need Research;  Standardized and Accurate testing methodologies;  Treatment Protocols; Prevention and Awareness. Collectively, our voices need to be unified in numbers to be heard. There are “many causes”  amongst our diseases trying to shout out all at  the same time;  these individual voices make it confusing for both the general public as well as the government to “hear”  as well as to  “understand”  our demands for future progress.

One of the basic techniques of a revolution involving Guerilla Warfare is to “take our weaknesses against the stronger opposing entity and to turn those weaknesses into our strengths.” In War, mercenaries and revolutionary fighters’ who have fewer and less potent weapons who are at a disadvantage against their opponents will strategize on how to overcome the stronger opponent. This strategy is a proven tactical methodology when unity and organization and leadership are all involved.

GWI/CFS/Lyme/Autism patients have the chance, we have the tools and we have the strength in numbers to elevate our position  by strategizing and uniting. The medical, societal, political and governmental agencies which have held enormous power and have stifled our progress for research and treatment are now at risk for the tables to be turned on them.

The Political Aspect of our diseases has to be handled progressively and we need to look forward. No matter how much injustice we have endured as  Patients; it makes more sense politically to go with the positive and progressive approach and to re-invent ourselves into success. The AIDS campaign was brilliant. WE have much to learn from their strategy as well as inventing our own.

Politically speaking, we need grass roots groups as well as ultra savvy politicos to make this happen.  Politics is a science unto its’ own. It is an intricate, intimate science that takes skill, passion, power and tremendous inside experience in order to be successful.

I have had more than a few revolutions in my lifetime thus far that have brought me to this point and time with wanting to fight for our diseases. Experiences where I was so influenced that I experienced a sudden, complete and radical change in my life. Through these experiences, my life views changed dramatically and my life was forever altered in my thoughts, dreams and aspirations. Needless to say my goals changed.

 Some of these experiences are too painful to speak of. Many of the positive life-altering experiences have had to do with education, traveling  and my illness since a young age. Yet, the one revolutionary experience that explicitly engaged me to enter battle with this illness; was watching my son Blake nearly losing his life to CFIDS. My Rules of Engagement changed at that point.

 I cannot help but think of our revolution with our illness and that of the story of Ernesto “Che” Guevara who was born on June 14, 1928. Ernesto Guevara set out on a life altering motorcycle journey through Argentina, Chile, Peru, Ecuador, Columbia, Venezuela, Panama then back through Miami to his home City of Buenos Aires. It was in part his experiences on this motorcycle road trip across Latin America that would impact Ernesto in a way that upon contemplation of his adventures he experienced a sudden and radical change in his ideologies which then altered his path from becoming a full time Doctor to becoming one of the most well known Revolutionary Leaders of our time. He was a Major Figure of The Cuban Revolution; He was an Expert in Guerilla Warfare. Time Magazine places him as one of the 100 Most Important Figures of the 20th Century.

During Ernesto’s Motorcycle Journey across Latin America as documented in: “The Motorcycle Diaries”, he was one semester shy of becoming a Doctor at the Age of 22 when he set out with his great friend Alberto Granada riding double on a Norton 500 Motorcycle called “The Mighty One”. As the two departed Buenos Aires on their 8000+ KM trip, the Norton 500 began its’ journey by spewing smoke and sputtering. As they left Buenos Aires for their arduous trip across Latin America “The Mighty One” provided many comical yet dangerous adventures such as flying into an irrigation ditch with both occupants descending through mid-air, hitting a herd of cows around a bend head on; and suffering a frozen chain over the Andes in Snow and Frozen Terrain demanding that the Bike be physically pushed over the mountain range. It eventually died a slow death and was abandoned along the way. Instead of quitting, the two adventurers continued on their journey by walking, hitch hiking and even using a handmade raft to float down on The Amazon. On their journey, these young men witnessed Poverty, Injustice, Illness, Death and Oppression.

Ernesto began his motorcycle journey as a well-read, compassionate, almost innocent young man who was just forming his ideologies through literature and his exposure to his social class. Through the impact of his travels and the atrocities he witnessed during these; revolution took over his point of view with the emphasis on Viva La Revolucion and then World Revolution via violence and Guerilla Warfare. Ernesto’s fight ended during an attempted revolution in Bolivia that did not go well from the start. By this point, he was not the man who he began as.

With the help of the CIA and our Countries newly highly trained Elite Group of Army Rangers, The Bolivia Army had the assistance they needed to stop the Revolution in Bolivia from occurring. Che was captured and assonated. It was 1969 and he was 39 years old.

What struck me about Ernesto Guevara’s story was his plight with severe Asthma. Ernesto had such severe Asthma that it was a miracle that he was able to travel on a motorcycle in inclement weather throughout Latin America and even a greater miracle that he was able to traverse entire countries on Foot, in difficult terrain, while fighting as a savvy Commander in Guerilla Warfare. He went for long periods without medication, food and supplies. He came close to death on many, many occasions from his Asthma Attacks; both when traveling on motorcycle and then during fighting his battles. His Asthma Attacks were of the severest form.

Before becoming a revolutionary, Ernesto was studying Leprosy as an intern. On his 23rd Birthday nearing the end of the Journey across Latin America, he decided to swim across the Amazon River to reach a Leprosy colony that was quarantined from the Main Island. Ernesto was leaving the area the next day and his last wish before leaving was to spend his Birthday evening with the Leprosy patients whom he had become fond of. As Ernesto swam across the Amazon; which had not been attempted before; there was frantic screaming from the doctors and nuns on the Main Island to “Turn Back, To Stop”. From the Leprosy colony on the other side of the river, the patients screamed to keep going “ERNESTO!” They screamed, urged and begged and told him he could make it. Ernesto had an asthma attack during the swim and it was a miracle that between the currents, the deadly river animals, the water temperature and his lack of oxygen from the attack that he made this journey alive. As he made it close to shore, the Leprosy patients jumped into the water, pulled him out and greeted him with cheers, love, respect and admiration.

There are many theories on why Ernesto “Che” Guevara became a Marxist Revolutionary Leader with such iconic radical ideologies aimed at World Revolution.  I think one factor that may be overlooked  is the fact that Ernesto had a medical condition that created a revolution within him that contributed to his fate and the path he took. His compassion for those that were ill or in trouble that he continually assisted at the expense of his own well being; the fact that he studied medicine to help others; the fact that his Asthma instilled in him such compassion for human life as to swim across the Amazon to give respect to Leprosy Patients at the risk of his own life portrays a humanitarian aspect known intimately to those with chronic and critical diseases.

Having a life threatening illness, being critically or chronically ill instills empathy and compassion in those that experience this which goes beyond measure of word or understanding for those that are healthy. I believe that because of Che’s experience with his asthma illness; he was driven to this level of empathy which changes ones soul. The endurance of such illness can cause passion, yet can also cause mania if not managed with proper care.

 We have passed the crossroads stage and are now entering the time of Revolution with our illness. Although we are entering this new era of unchartered waters for CFS/GWI/Lyme/Autism, it is important for us as patients to understand what we are fighting for and why. In order to WIN a Revolution it is important to know what you are fighting for and it is imperative that you fight out of Love and Passion for the cause for which you have been oppressed. Revolutions are not won by anger, but rather by the intense desire by people to create a better existence and standards which they have unjustly been denied.

                                                                                                                                                                                                                                                                                                                                                     

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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

Accepting CFS/CFIDS/GWI/PTSD. Great Expectations.

 When I think of the term Great Expectations, I think about sailing around the world on a Schooner or flying around the world in The Electra. I think of Amelia Earhart and her indomitable spirit for aviation. I think of limitless and endless possibilities.

 The flipside of the term Great Expectations goes very much like the Novel Charles Dickens wrote in the mid 1800’s.  It is about a young boys’ quest for maturity. In his life’s journey, his main attempt is to become a well-mannered gentleman. At age 7 the boy encounters a unique situation whereas he tries to do a good deed, which he feels is “just”. The good deed involves helping a convict and turns out to be a major life-altering event. Orphaned and living with his abusive older sister and her husband, the boy grows up to learn his lessons the hard way. He learns very early in life that “the means does not always justify the ends”.  He learns about the enormity of knowing “guilt” first hand and carrying this broad burden.  After accepting inheritance money unknowingly from a disreputable source pertaining to his previous “good deed”, and becoming a well-mannered gentleman as he desired, he eventually is stripped away of all the inheritance and of all his possessions. The man learned that all of his Great Expectations did not turn out as he planned; yet in the end he graciously accepted what had befallen him. He walked away with a clear understanding of life, love and of becoming truly well mannered.

 I never expected to contract CFIDS. I never expected to be ill, I never expected to have viral overload and I never expected that if an illness should appear in me, that there would not be a viable treatment or cure. I have always had Great Expectations for this life. I have dreamed and created and lived life to the fullest. Now I find myself a caregiver to my son Blake, as well as a patient.  I find that my days are filled with Acceptance.

 CFS/GWI patients expect to have their cases heard, reviewed and treated. There are an estimated 17+ Million Cases of Chronic Fatigue Syndrome reported worldwide. There are around 36+ Million Cases of AIDS reported worldwide. I do not think as patients we should “expect” a cure for our illness. I think we should DEMAND the necessary research in order to obtain viable  treatment options.

 CFS/CFIDS/GWI/PTSD have  not been given the Biological Respect nor Biological Funding that they deserve. And what great studies have been done showing treatment options, are being ignored. This needs to Change as soon as Possible.

 According to the latest CFS/CFIDS research results, new information proves that inflammation of the brain is present and that the disability of patients afflicted with this illness is equal to that of a patient with Late Stage AIDS, Chemotherapy or Multiple Sclerosis. The Cost alone of  CFS on The United States Economy is estimated to be 25 Billion Dollars per year. Yet, The National Institute of Health ranks funding for  CFS Disease near the bottom of their list of 200 diseases.

  I expect that Political and Medical Reform for CFS/GWI/PTSD be on the horizon. Although several agencies have not handled this illness well in the past, I expect they shall do so in the future after progress is made with current studies. A positive factor in this Reform is the cropping up of websites around the world devoted to  Patients. It is both the creators and participants of these sites that are changing the landscape of our future as patients, as well as the Specialists devoted to research and study.

 The important lesson learned in Dickens novel Great Expectations which pertains to us as patients, is to learn from our past in order to move on successfully into our future.

Julia Rachel

Very Lucky Girl on Valcyte

Pivoting Towards the Future With CFIDS/GWI/PTSD Diseases.

Learning to Pivot with a chronic illness.

Pivot Sprinklers are a method of an Agricultural Crop Irrigation system in which equipment rotates around a Pivot.

This equipment is technologically advanced and useful in certain types of terrain whereas other types of irrigation equipment would not suffice. There are approximately four different manufacturers of Pivot irrigation systems in the world. One of them holds 60-65% of the industry, two others compete for roughly 30% of the business, and then one company holds about 5% of the market. How does a farmer discover that company which holds the 5% share of the market? By word of mouth.

 Right now, I am looking out my office window at a fairly extensive Pivot system made by T&L who is the 5% market holder. The pivot is an interesting mechanically engineered device with precision calculations. I’ve watched pivots in motion for a decade. Little did I know how much I would have in common with this machine.

 With the latest viable studies being published on  the viruses HHV-6A,  EBV and CMV; it seems as if our diseases are  pivoting towards the future. As advocates, patients and caregivers we have diligently pursued understanding, coping, fighting and even battling for and in our condition. Unfortunately, the time is not quite ripe for vindication or a cure.

  We are in the “baby step” mode of figuring out our illness and must take the proper steps from A to Z. We need  to define the subsets involved then research the medications to treat these diseases.  Although there is hope on many fronts, science is founded on due diligence and only concedes to “scientific proof which can be replicated”.

 The externalities of central nervous system overload for long periods of time are managed with many different medications; however these are band-aids albeit necessary.  One can only wear a band-aid for so long. It becomes frayed, dirty, time-consuming to maintain and the sore underneath does not heal without fresh air circulating around it.

When I think of the mental anguish we have been exposed to as patients with our illness, my heart and lungs cry out for us as a whole. The discrimination, the revolting shunning from the medical and societal realms and the disgraceful condition many of us have ended up in is frightening. I did not know the meaning or the ramifications of knowing the word “prejudice” first hand. Prejudice injects fear, self-loathing, drama and hatred into ones life. Through the process of enduring this, I discovered that I have a choice to pivot in my thoughts, actions and words into how I choose to move towards the future with my illness.

 I choose to pivot away from the shunning, the despair, the anger, the hurt and the emotional trauma of dealing with our illness. I pivot to a place of strength as I try to navigate this river that at moments has no current and is dead calm; then abruptly turns into class five rapids.

 Reflecting on the past in order to pivot towards the future, I am analyzing the past year of medical treatment for Blake and myself. Blake started Valcyte one year ago last month. He takes 900mg once daily. He is also on the ALT diet and takes DHEA due to low blood test results. He is deficient in nutrients according to the Spectracell Nutritional Assay Blood Test, so he takes prescription vitamins to address this mal absorption issue. Blake takes around 40 Vitamins total plus D-Ribose and Protein Powder spread out at 7 intervals throughout the day.

  During Blake’s journey with this illness, he had tried to continue attending high school on/off for 3 years. He would sometimes last 2-6 weeks at school before becoming bedridden again. He attempted to attend regular classes about 4-5 times during that 3-year period. He finally ended up completing high school through a series of independent study, home/hospital and other school programs tailored to his needs. He then attempted a first year of courses at a junior college while living in the dorms.

So many doctors had told Blake “to get up and get on with his life”, thus he attempted to do so. Blake enrolled in a junior college and lived in the dorms while he tried to forget he had this undefined illness. He ended up on academic probation in college and completed about 8 units of 36.0 attempted. He repeated classes and could not pass them. On the last day of college, Blake called me to pick him up. I was astonished that he wanted to move back home, as he had fought so hard for his independence and health since his illness began. When I picked him up, I was astounded, shocked and horrified by the young man sitting in the rain waiting for me. He was but a shell of himself. I realized then, that if we did not get a diagnosis and treatment soon, I would lose my son to this illness.

 Prior to starting Valcyte, Blake was bedridden for 5 years on and off. The last three months before beginning Valcyte, he was down nearly 40 lbs, was completely bedridden, had a foul odor emulating from his body and he could no longer care for himself. Cognitively and physically he had declined to a 1 on a scale of 1-10. Blake’s cognitive decline also included anger and anxiety. His problem solving skills and ability to read and write were no longer available to him due to loss of short-term memory loss and the “brain fog” which the HHV-6A causes. His socialization skills had declined to the point where he felt ill at ease in conversation and was only able to utter a few words at a time in conversation; even with his life long trusted MD. He had lost his ability to use phrases and could not remember names, places, things or what words to use.

 By the time we got to our hundredth trip to a Doctor trying to get a diagnosis for Blake, this is the condition my 20-year-old son was in at that time. The 100th medical trip in 5+ long years exposed a diagnosis of CFIDS. Blake tested high  positive for  HHV-6A and EBV.  Blake was prescribed a change in diet, compounded DHEA, a vitamin regime and Valcyte as a trial to kill off the HHV-6A and EBV.

 The first 90-120 days on the Valcyte were rough going for Blake. He was bedridden and felt horribly ill during the “die off” phase. However, after about 90 days he began to “awaken” cognitively and his low blood pressure (sometimes the high number was 70) was beginning to stabilize. He began to stand upright when showering; he used to fall down as he was dizzy. I noticed that his balance was better as he was not using the hall walls as hand rails when he walked.  For the first 3-4 visits to the specialist who diagnosed him, Blake was in a wheelchair going through the airport. Sometimes he would refuse the chair, then just sit down ½ way to the boarding gate; he could walk no further. I would go back, get a wheelchair and we would continue on. Watching Blake fight and resist this illness has taught me to pivot towards acceptance. Sometimes we do not have the strength to fight, the best we can do is to “accept and pivot” to a better place mentally and physically. This is a moment-to-moment constant process with these diseases.

 At about month 9 on the Valcyte, Blake began to gain weight and to read and to notice that he had more energy. He began to take walks around our ranch and “muscle memory” from his athletic days started to re-appear. He has gained approximately 20 lbs this past year. He has another 20 lbs to go. At month 10 on Valcyte, Blake began to read entire books again. His walks became longer. He still had chest pains when attempting to run or walk too fast. At Month 10 he decided he might be ready to finish a geology course that he had obtained an “incomplete” in. At month 12 Blake re-entered the college classroom for 4 weeks of attending one class, which includes a laboratory session of 3 hours once weekly. He did very well the first week of school. At the end of the second week, he had a setback and was bedridden for 4 days. He missed one day of school, yet has rebounded and is back in class.

He plans on attending college next semester and attempting to complete one math course. It is a one-hour class, four days per week. I believe he will be successful at this attempt as his condition is improving.

 Blake never talks to his friends about his illness. His core group of “athletic friends” disappeared, as did an entire side of a familial genealogy due to lack of understanding. Blake stumbled through this medical journey by pivoting towards music in his darkest moments. He learned on his own how to play acoustical and then electric guitar. He began to compose and sing music. A band formed. The band members to this day drag their equipment out to our place  and play music with Blake, if even for just an hour or so with his condition.

 After one year on Valcyte, Blake is now more independent. He attends social gatherings, spends more time with his girlfriend of two years, goes on outings with “the band” and is back at college. He rests allot and cannot be on his feet steadily, as he does not have the physical strength as of yet. He is about 50%  physically. Cognitively, I would say he is at a 60%.

 I have just completed 6 months on Valcyte, 900 mg per day. I would say that I am 50% improved cognitively and 25% physically. I feel as though I “am mentally waking up”. My HHV-6A and EBV titers are higher than Blake’s; my DHEA levels are lower than his. I also tested positive for the CMV and the Micoplasma Pn. Infection;  I take  600mg of Zithromax daily to address the Micoplasma Infection. We are hoping the Valcyte will work on lowering the HHV-6A, EBV and CMV levels.

 The first 60-90 days on Valcyte were extremely rough for me. I was totally bedridden during the “die off” phase. I bounced back and began to notice slight improvements that have led me to where I am today. I’ve enjoyed the change in diet and I’ve enjoyed every moment I’ve spent with Blake during this process. I am enjoying watching his journey to Independence and even have a glimmer of hope that he will resume his studies of  engineering.

  I am anxious to get rid of the “band-aid” medications and I look forward to continuous healing. I have accepted, fought, coped and battled this insidious disease on all levels of life.  I have learned to pivot towards people and groups that understand my journey with this illness.  It is by word of mouth only that we have found each other and united. Our task at hand as a “united voice” is to advocate for justice, understanding and most importantly to fund research so we may discover how best to diagnose, treat and prevent our diseases.

With these goals in mind, each one of us endures moment-by-moment.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

 

 

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