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.




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.


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.

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.




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.