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

Viral Jungle Terrain. Navigating CFIDS/GWI/PTSD Diseases.

“At the going down of the sun and in the morning; We will remember them.”

~ Laurence Binyon’s WWI Poem

“For the Fallen.”

When we experience great loss, we have a choice in how we respond. We can choose to follow our fallen or losses; or we can choose to hone our focus in order to move forward.  I respectfully choose to move forward in honor of those fallen and in spite of any losses  experienced.

Honing focus takes training, experience and the will to do so. If I lose or shift focus, my goals are not met. What are the common goals that link Autism, CFIDS, GWI, Epilepsy and Lyme? These diseases have been proven to be scientifically linked and associated through the same and or similar viruses, brain abnormalities, immune dysfunction, gut pathogens, heart abnormalities and genetic predispositions; amongst many other biological factors.

It looks as if  common goals for biological care include but are not limited to:

    1.  Diagnosis and treatment for viruses and pathogens associated in each one of these diseases.
    2. Get appropriate care for the brains of these patients; such as High Resolution specialized MRI’s and Medications that will help heal the brain and central nervous system.
    3. Diagnose and treat the dysfunctional immune system.
    4. Diagnose and treat the endocrine and rheumatoid systems.
    5. Diagnose the gut system; test for pathogens and treat these.
    6. Assess the reproductive system of patients and treat if affected.
    7. Test for nutritional deficiencies associated with cellular and gut malabsorption. Address these mineral and vitamin deficiencies with a licensed DO or Nutrition expert in order to add  high-grade supplements shown to be lacking by blood tests.
    8. Check for PON1 deficiency; exposure to Molds, Toxins, Chemicals and vaccine reactions.

Having said all of  this, it looks as if the entire physical operating systems of these patients needs to be addressed and treated. Treating only one of these systems will likely not return a patient to status quo and this methodology might not  be enough to save a patients life.

It will only be through a collective, combined and collaborative effort across a broad spectrum of specialties that patients of these diseases will heal. Too many systems of these patients are being affected and degraded. It would be nearly impossible to have one doctor capable of addressing so many different multi system dysfunctions across such a broad spectrum of specialties. Specialists from divergent fields are needed in order to treat all patient systems for optimal health.

Unfortunately, medicine alone will not prevent these diseases from escalating nor will it help to heal patients. Political action needs to take place in order to ensure  protection and progress for these patients. Progress in research and treatment has been backlogged, halted, diverted and prohibited in some cases due to the siloed factor. The only method to untangle this debri field successfully is through political action.

Epilepsy has not seen a new treatment drug in nearly 50+ years. Epilepsy is prevalent amongst patients across all of these diseases. Outdated, archaic brain surgeries are still being performed on some Epilepsy patients.

Autism is escalating at an alarming rate and is highly associated with families having CFS and GWI. Lyme disease is intertwined with CFS, GWI  and Autism. Ticks now carry all sorts of different types of pathogens such as Micoplasma plus tick borne pathogens that have not even been named as of yet. Lyme families experience higher rates of Epilepsy, Autism and CFIDS.

Gulf War Illness is flip-flopping all over the map. It looks as if there is absolutely no good treatment centers or forms of treatment for GWI. Soldiers and Veterans are left behind with no available treatment options in sight.

CFIDS has made some leaps and bounds but has also been thrown some horrendous red flags by agencies playing “referee” in a game they know nothing about; or pretend to know nothing about. Case in point; the name of CFS is completely wrong, the approach  for treatment is wrong, the image is wrong and the hysteria is correct.

Categorizing Autism and busting up ASD’s into segmented disorders is another example of  diverting a serious biological illness into a DSM category.  By deliberately  labeling ASD’s as psychosomatic disorders  instead of  factually categorizing these  as the proven biological  diseases they are,  is a violent disregard of human rights. Public safety is at stake  and the national economy is at risk by not treating these biological diseases.

The U.S. Government spent nearly 300 Million Dollars in litigation arguing that “Gulf War Illness does not exist”. The debate was settled in court. GWI exists and is related with CFIDS and Autism by infectious common denominators. GWI is now showing up in non-deployed soldiers and their children have higher rates of Autism.

Lyme disease communities have fought hard to get their disease recognized and labeled as a biological disease. Pathogens, viruses, immune dysfunction and brain abnormalities will continue to rise within Lyme disease unless all body systems affected are addressed. Lyme disease is no longer about “the tick disease”. Lyme now ranks in the neurological, infectious, and immunity specialties.

Autism, CFIDS and GWI hold keys of research and discovery that Lyme Patients need for optimal treatment and prevention right now.  New information is emerging that  tick borne pathogens are being carried by vectors other than ticks. Lyme is progressing to a new level; which translates to new sources of threats and areas of contagion.

Because these diseases are so strongly intertwined and scientifically linked, because these diseases each hold a piece of the puzzle needed to help one another progress,  because these diseases are deliberately being overlooked and separated from each other in a “siloed” situation; collaboration and political action needs to take place in order for immediate progress to occur.

Long time advocates like  Marc Iverson, John Herd, Pat Fero, Erik Johnson, Hillary Johnson  and all of the dedicated advocacy groups, 501C3s, Organizations, Websites and Facebook Pages have kept this ball rolling.

It is the combination of all of these Advocacy Voices and Groups (and more)  whom have ” held and lit the torches”  which continuously ignited the perpetual  REFUSAL to let this cause for action be forgotten.

Lest anyone think that our fight for research, diagnosis, treatment and prevention is in a “discouraging era”; you are mistaken.

Jungle terrain navigation is survived by fierce warriors. Inch by inch, tactics of the highest caliber must be learned, practiced and employed in order to survive.  Successful exit from a jungle takes skills, strategy, unconventional tools and wisdom. Navigating Autism/CFIDS/Epilepsy/GWI and Lyme will take the same sort of innovative tactics.

The only way to achieve progress for research and treatment on a viable scale, is through national political action. Our diseases need a game changer by utilizing national and international  political action with the goal to benefit medical progress for the justice of the patients of these diseases that have been oppressed.

JULIA HUGO RACHEL

Very Lucky Girl  on Valcyte

Blake Update: He has Gained 12 lbs this summer (that is a total overall gain of 35 lbs, with 20 more lbs to gain). He is off Valcyte and is now  on long-term antivirals (Valtrex). He is stepping up from Junior College Level to University Level. His major is in Physics/Engineering and Military Science. He is going to try to attend University 3/4 time with support from the disability department to help him with his cognitive issues. He has hopes of adding back physical exercise within 18 months. We now have hope for a 90-100% recovery. Without a doubt, Valcyte treatment saved Blake’s Life. We now work on Phase 3; the Immune and Nutritional and Lifestyle systems. “Inch by inch” we work towards healing and recovery with this illness. Blake still has days of being bedridden. I would estimate these run from 1-3 days per month. All Orthostatic Intolerance is gone after the Valcyte treatment. We keep an eye on his DHEA levels as he gets migraines when the DHEA is low. Blake has shown up with 5 different underlying pathogens. We will report on treatment for echovirus B, VZV, Chlamydia PN., etc on the next report.

I encourage everyone to get tested for the viruses and pathogens known to be associated with our diseases. (These are listed in our prior blogs.) Getting tested is a step that can be taken right now. More Doctors and Physicians across the country are prescribing antivirals and antibiotics to treat these infections right now. I have heard from New York, Texas, California, Nevada, Arizona, New Jersey, Florida, Washington State, Oregon, Virginia, CT, Washington DC,  Hawaii and many other States that patients are getting treatment for their viral and pathogen Infections RIGHT NOW. Although more phases of treatment are needed, this is a treatment avenue patients may take right now should they choose to do so.

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