One of the most intriguing aspects of healing with CFS/ME/GWI/Autism/Lyme is the clear observation that Western Medicine alone will not fully help to heal these diseases. At this point, we do not have the luxury of   ”a cure”, yet we do have the possibility to Heal.

  Healing with these diseases is allot like cooking. It is just not ONE thing that will work. In cooking, it is the combination of  ingredients in a dish that makes it go “WOW”.  In Our illnesses, there is no “Ah-ha” moment with a singular healing tool.  And to make matters more complex, every individual is different and should treat their bodies as such.

We know how to treat  and combat the Viruses (HHV-6A, EBV, CMV) and the PLETHORA of Infections (See Previous Blogs) in patients;  but do we know of other tools that are proven to help heal?  YES!

Our Family Healing Journey began 3 Years ago when Blake was placed on Valcyte. Equally important, prior to starting Valcyte, it was strongly  recommended that he change his diet completely and to report the percentage of  improvement from a diet change alone. The improvement after changing his diet was a definitive 10% improvement. The diet change involved eating NO dairy, wheat or sugar; rotating animal proteins at 4 day intervals and never eating a starch with a protein. No packaged Foods allowed.

We then began the evolving  educational  journey of learning  the importance of  ATP and Mitochondrial function within our bodies and HOW critical of a role  food plays with these cellular functions.  Nutrition is more than just  ”feeding a body”, it is a complex system involving a science designed to allow a body to function.  This complex system promotes repair and healing. Patients with compromised systems need all the help they can get. Understanding how to nourish  your cells for optimal nutrient absorption can greatly  help a patient during the process of healing.

 It was a wild diet change for Blake who grew up eating meat and potatoes on a ranch. Homemade bread and pies were ALWAYS at his fingertips. At 15 years old Blake was 6’2″, his shoe size was a 13, he weighed 186lbs, was playing 5 sports -Varsity Level. He was getting a 3.5  gpa school average. Diet and nutrition were never an issue for Blake.

 The Nutrition aspect of Blake’s life changed drastically when he;  became ill,  bedridden,  immunocompromised then had a near death experience with this illness. It was only AFTER having dropped nearly 56 lbs, having shrunk 2″ in height, having shrunk 2 shoe sizes, having lost the ability to read or write, having lost the ability for mobility, having lost normal vital signs and being bedridden on/off consistently for nearly 5 years that Nutrition became a major player for our plan to heal.

 We did as the Doctor recommended. We began a journey with Nutrition that is still evolving. After 6 months on that strict diet, Blake began adding foods back into his diet. Three years later, he chooses not to eat anything packaged; he eats dairy, wheat and sugar sparingly.

 Blake was also tested for nutritional deficiencies through the Spectracell Blood Assay test. He was prescribed an enormous load of vitamins to make up for what he was lacking (according to test results). No matter how well Blake ate, at that point his body was unable to absorb nutrients he needed by eating alone. The Vitamin regime was expensive but necessary. I still consider this tool one of the best  available in combatting these diseases; especially when wasting syndrome is involved (Cachexia).

 As a  young adult patient, stepping up from Junior College, then moving residency and attending University level courses in a new town was stressful  for Blake this past Fall Quarter. He missed 4-5 days of class during a 9 week period, then crashed one week before finals.  He was bedridden for 7 days straight. During this  “crash”  before finals;  He dropped 10lbs in a week, battled a bronchial infection which went into pneumonia, his back went out and he was unable to read, write, think or cope.

Luckily, we had a great Ex-CDC employee as Director of  The University Medical Clinic and she recorded the week-long crash diligently. She treated Blake with compassion and great care, seeing him 3 days in a row. Medical records showing the patients weight loss, vital signs decline and onset of infections is crucial to prove how severe these episodes are.  Finding the right doctors take time.

 The craziest part of a patients life can be during a “crash”. One moment, all is well. The next moment, all goes horribly wrong.

Being a strategist, I’ve taken a tactical approach. I have this “Attack before the illness takes my son down  Button”.  As soon as Blake shows signs of decline, I am ON IT. 

 Preceeding and during a Crash, Blake becomes belligerent. He  thinks (dreams) he is still an athletic and brainiac hero thus is able to overcome any stress, crash or infection coming on. Me, I know the truth. I’ve lived the reality of this illness as a patient and as his caregiver. I’ve been dealing with this disease for 30 plus years in my own body and I have enlisted myself  to combat it in my son’s body.

At times, dealing and healing with this illness,  reminds me of a war zone. Yet,  if there is one thing I am programmed to do; it is to strategize and fight. I grew up in a competitive, strategic and industrialist environment and my tolerance for quitting is ZERO.

Avoiding stress and anxiety when possible is a  MUST.  If there is a known physical or mental situation or  trigger; we avoid it. Life happens, stress happens and at those times we do our best to re-direct and move on. Band-aid medications are still a protocol for healing. It is important to get enough sleep, to see a counselor if needed, to keep anxiety levels at a minimum and to manage pain if present. It is vitally  important to calm down all of the affected systems in order to lead any quality of  life. We use medication and holistic tools as needed.

I was recently researching a food dish using Mung Beans.  I was curious as to the Mung Beans familial relationship with Frijoles. I knew that Frijoles were a cultivated bean for food source. I wondered where Mung Beans were from, how they were grown or how they were related to the Frijole. During my research, I discovered that the Bean family derives from the Latin Phaseolus which means Wild Bean. Considering that I was cooking  a dish that was related to the original Wild Bean on Earth reminded me of our illnesses and how they are intertwined on a familial basis.

 CFS/ME/GWI/Autism/Lyme/MS and Epilepsy are in the same “family” of diseases. Researchers know this and are now collaborating to prove this through a plethora of specialities and etiologies. We have an illness that is not a singular disease. We are part of a family of diseases; which have been overlooked and suppressed for far too long.

 Recently, I took on a political project to further the causes of these illnesses. In a recent meeting, a lead researcher asked me “why“? I did not hesitate with my answer;  I said  ”because this illness messed with the wrong Mother“. 

 I was seriously  OK  with being a long-term affected patient,  getting excellent care and coping with my illness. Yet when my son was afflicted, I took a hard look at what he and millions of others were suffering with and the amount of suffering endured. Because I have spent so many years around politics; for me to walk away from this political issue, would amount to negligence and irresponsibility. It would be tantamount to watching a baby crawl out in front of a moving vehicle and doing nothing.

I started writing this particular blog about 12 days ago. Blake has now made it through Finals.  He does not think he passed one of his classes and has concerns about continuing  at the University Level.  I have spoken little about the toughest moments of our journey, choosing to stay with the positive.  It seems prudent to mention these “down” times now. We shall see how this chapter ends, when this blog is complete.

The truth is, Blake wants to quit at times. He wants to give up. He feels hopeless, worthless and consistently feels “like an outsider”. Other young adults his age interact and carry on with their lives in a manner in which he is unable to live. He is unable to exercise, to carry on a normal conversation when he has neurological episodes, to go out and have fun 95% of the time, to be around crowds when he has anxiety and to remember certain words when speaking.

With time, these behaviors and feelings will lessen as he heals more. The point is to NEVER give UP, NEVER QUIT and TO KEEP TRYING. The greatest gift I can give as a caretaker is the gift of  Innovation and Improvisation. To Improvise and Innovate are great strategies when the going gets tough. 

At some point, Blake is going to have to take on his Leadership Role and care for himself. He needs to fight to get back into the game called “life”.  He is nearly ready to take this fight on himself.  Because of Valcyte and all of the healing tools we’ve learned, I would say he is  close to having complete independence.

Going from The “A” game to being a disabled patient is humiliating. It can wear and tear down the best and the brightest. Will Blake pass his courses this past Fall term? Will he be able to recover physically and mentally from this latest “crash” ?  Will he gain the 10 lbs back that he recently lost?  These questions as well as his heart condition weigh heavily on my mind. 

 Blake struggled for 3 years to get from the Junior College to the University Level. When he feels beaten down, he wants to “quit”. The only tool I know of to foster forward movement in a patients life, when all else fails; is the tool called “HOPE”.  The hope that someday life will be better, someday our bodies will be stronger, someday there will be more treatment options and cures available.

Like the famous book of  Dichos, “Its’ All In The Frijoles”,  healing with these diseases is like a perfect pot of Beans. No matter how you cook your beans or what type of beans you cook, its’ all about the “recipe”. 

Personally,  we’ve gone for the Grand Slam approach and are trying for  90-100% improvement.  How long will it take and will Blake exercise at optimum levels again? These are questions I cannot answer.  However, he plans on starting to swim in an indoor pool this winter.  This will be his first attempt at regaining any exercise regime, besides walking to classes.

Days have passed. The grades are now in. He missed a 3.0 gpa this quarter by 1-2 points. Blake is holding steady at around a 2.75 gpa  as a Physics/Engineering Major plus  Military Science-Linguistics.

If we dwell on what he cannot do at this particular moment, we lose sight of  “what he can do”.  He now attends a University Level Science program, he drives a car, he walks, he is upright 85% of the time, his crashes last 3-7 days instead of  weeks or months.  Blake can now read and write. Its’ taken 3 years, but considering how bad off he was, this is a miraculous healing tide.

Immunology will be heavily addressed in Phase 2 of Blake’s Treatment. I believe  it is  ”all in the recipe”  and that for patients with these diseases;  the healing recipe is constantly evolving and  changing.  Blake and I dedicate this Blog to Dr. Jose Montoya.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

 During World War II,  400 Native American Marines were tasked with  the transmission of secret tactical messages. They developed  communications nets using formal or informally developed codes built upon their native Navajo Languages. Their service improved communications in terms of speed of encryption. These Marines were known as CODE TALKERS. Code talking, however, was pioneered by Choctaw Indians serving in the U.S. Army during World War I.  The first known use of Native Americans in the American military to transmit messages under fire was a group of Cherokee troops utilized by the American 30th Infantry Division serving alongside the British.

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

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

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

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

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

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

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

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

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

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

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

Through our intensive research, we  found that the vast majority of  patients of these diseases have not been accounted for, nor written about nor even noticed. It will be these overlooked patients  that will change this psycho babble  game dubbed by the CDC as “the yuppie flu” and “Blue Mono Man Syndrome”  into a full-fledged recorded Pandemic.  Like the riderless horse at Arlington in section 60 last week, I can not help but have an eery feeling that the names for these diseases will change, yet the associations with Cancer will become stronger.

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

BLAKE UPDATE

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

“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 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, Chronic Fatigue Syndrome, Gulf War Illness, 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 just one of these operating 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; therefore 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. It will take top specialists in each field, working together, to treat and restore 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 as progress in Research and Treatment has been backlogged, halted, diverted and prohibited in some cases.

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 CFS.

Gulf War Illness is flip-flopping all over the map, literally. 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.

Chronic Fatigue Syndrome 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. The hysteria needs to stay.

Average citizens should be hysterical (as in Frightened) over the likely chance that they have a 1 in 20 or greater chance of getting infected and taken out by CFS. No doubt, average citizens will also become hysterical when they lose their lives to CFS. The process and the way this disease destroys a body, a life and a family is devastating. Its’ no wonder patients become hysterical for a cure, a treatment or even just a gesture of support.

The Name “Chronic Fatigue Syndrome” is not the name of a disease; this name was assigned as a deliberate attempt to conceal a serious illness by labeling it as an “Excuse Name”. It was a name specifically and conceitedly awarded to label a serious neurological and debilitating  disease as an “Excuse”, instead of a serious  Disease. Committing a violation of Human Rights by ignoring, discounting and suppressing  a serious biological disease by playing the name-blame game is an atrocity.

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”. That case was LOST. GWI exists and is STRONGLY related with CFS and Autism; and now  GWI is showing up in non-deployed soldiers plus their children have higher percentages of Autism.

Lyme disease communities have fought hard to get their disease recognized and labeled as a biological disease. However; 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, viral, immune dysfunction and brain abnormality specialties.

Autism/CFS 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.

A concerted national political action group and campaign targeting the undertaking to fight  on behalf of the above diseases has been called “Impossible”, a “Long-Shot”, “Can’t be Done”, “Against All Odds”,  “It Will Never Happen”, “It won’t work”, etc.

These challenging statements only ignite visionaries to focus on what CAN be done, as well as how SWIFTLY movement can be made in order to achieve Maximum OPTIMAL GOALS. The Mission of a Political Campaign is to meet as many objectives as possible and to WIN.

There are many Citizens, Veterans,  Patients, Doctors, Researchers and Scientists surrounding these diseases that want to focus on surmounting the Big Political Challenge of this Hot Topic Campaign Issue. The Ball for National and International Political Action on Behalf of these diseases has begun to roll. The official start date for this concerted Political effort began in earnest on January 7, 2011.

Although current Political Action is in the beginning stages, this Political Action Ball began rolling 50 Plus years ago when Outbreaks began to be recorded, when patients began to become disabled, when children began to lose their childhoods, when soldiers began to show signs of illness and their family members became ill; when Lyme disease spread Nationally and when Autism  began to dramatically rise, etc.

The political fight for Justice for these diseases did not just start recently. The quest started when Dr. Nancy Klimas began her work on the immune dysfunction of these patients; when Dr. Albashi began his research work;  when Kristin Loomis began her work with the HHV-6 Foundation; when Dr. Peterson refused to give up on his Patients; when Dr. Cheney attacked every angle with every moment of his time; when Dr. Bell refused to believe an entire town could be affected and disabled from “a yuppie flu”;  When Paul Sullivan refused to “leave no soldier left behind” and fought for Gulf War Soldiers and Veterans who were sick and dying; when Howard Bloom worked endlessly with a neuroscientist to crawl out of a darkened room he spent  17 years of in a fetal position.

The list of advocates goes on and on and on; as the band keeps playing.

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” that 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, navigate and stay alive in Jungle Terrain. Successful exit from a Jungle takes skills, strategy, unconventional tools and wisdom. Navigating Autism/CFS/Epilepsy/GWI and Lyme will take the same sort of innovative tactics.

Sometimes the greatest way to win a Battle, is to let your opponent walk through a trusted door that has always led them into their home court advantage. At some point and time; with a surprise element; That trusted door Closes. The Home Court Advantage is lost and the game changes.

Through National Political Action, Home Court Advantage is not only changed, the players as well as the game is changed. 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

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, The 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, Chlamnydia 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 and 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.

“SEEING RED”  for Autism/CFS/GWI and Lyme Patients can be construed in many ways. Red is the warmest of all colors, the color most chosen by extroverts and the Top PICK for Males. Red is known to be a passionate color for romance and is widely recognized in many cultures as having connection with enthusiasm and power.

Red is also known as the color of “anger” and is symbolic of temper and blood. It is no wonder that red is the color of Mars – known as “The God of War”.

Patients with Autism/CFS/GWI and Lyme Diseases are “seeing red” out of anger and frustration that the medical, societal, familial and political realms are overlooking and suppressing their needs for diagnosis, treatment and prevention. Doctors that try to help and treat these patients experience similar feelings in that they are pressured, ridiculed and even forced away from assisting patients.

Across the barriers of Autism/CFS/GWI/Lyme there lies a sea of misunderstandings, myths and miscommunications. “Seeing Red” could stand for Seeing Research, Education and Discovery come to fruition for Autism/CFS/GWI and Lyme Disease.

I have never heard of such injustices within a patient population as those that have been inflicted onto these four diseases. Predjudice,  malpractice, oppression, suppression, ignorance, negligence, physical abuse, mental abuse and much more has been laid upon the bodies of all of the patients suffering from these four diseases. Never mind we have a Pandemic on our hands; we now have a human rights issue on our hands as well. Blood has been spilled.

Some of the blood that has been spilled has been tipped by our own cups. Groups vying for their positions, views, opinions and beliefs have at some point and time begun digging into trenches and then launching missiles at each other. This is COMMON in grass roots advocacy and may be a common trait in human behavior. Herein lies the Paradigm, yet herein lies the ignition  for “The Paradigm Shift”.

 At some point and time, entities realize that it is absolutely exhausting and futile to re-invent the wheel and to focus on a single tree. Realization sets in that there are millions of trees in a forest and certain wheels have already been invented.

The one thing I love about flying, is gaining new perspective. I love seeing lands, terrain and oceans from an aerial vantage point that I could never have imagined from below. This is both charming and at the same time idealistic. The United States of America was founded on the belief that if you work hard, innovate and unite; anything is possible. I believe this to be true if one remains open to flexibility, change, sustainability and progress.

At some point in time,  Autism/CFS/GWI and Lyme Diseases have all been individually labeled as “impossible” issues to solve on a political level.  With some of our most momentus milestones, a wrench has appeared to be thrown into our wheel of fortune; thereby shutting down our progress. There is now an established need to have a Guardian at the Helm of our Wheel that Protects, Serves and Delivers the Rights of Justice for these Four Diseases.

HHV-6A virus, CMV virus and EBV virus plus pathogens such as Micoplasma ssp., Chlamydia Pn., Coxsackie A & B, Borrelia burgdorferi, Bartonella, C. trachomatis, C. psittachi, Echovirus A & B, plus a plethora of other pathogens infect these patients. Patients have brain impact. Patients have a genetic predisposition. Patients have central nervous system meltdowns.  There are enough published scientific studies showing evidence based proof that patients of these diseases need; A) Virus and Pathogen Testing; B) Specialized MRI Scans; C) Full Endocrine and Rheumatological work-ups; plus more.

Patients need to know what viruses and pathogens they test positive for; patients have the right to testing in order to prevent further spread of these infections. Education needs to begin at the patient level. We can educate the public all day long but at the end of the day, do you know what you test positive for? Do You have infections that can be transmitted? Who are you infecting?

I encourage every patient with Autism/CFS/GWI/Lyme to get tested for HHV-6A, EBV and CMV viruses through Quest/Focus Laboratories ONLY. I encourage all patients to get tested for every pathogen known to exist between Autism/CFS/GWI/Lyme.

Every Pilot knows, “You have to put on your own Oxygen Mask before you can Save anothers Life”.  The time to get tested is now. The time to put on our Oxygen Masks is RIGHT NOW. We have the responsibility and opportunity as patients to slow down the rate of epidemics and pandemics by acting right now. We have been so busy looking at what we “thought” was the Largest Tree in the Forest; we refused to look at the Ecosystem, let alone her Forests, Mountain Ranges and Oceans.

The Paradigm across these four diseases which is about to shift; is the realization that in each disease, we need to treat BOTH the PATHOGENS and the VIRUS. Otherwise, recurrent reactivation cycles will continue to plague the patient, late state disease will occur, disability will continue and the risk for fatality increases. We also need to explore key medicines pertaining to enhancing the immune system in order to supplement and coincide with treating viral and pathogen infections.

Viral Myocarditis, Encephalitis and Epilepsy have all been scientifically linked with HHV-6A. New studies are showing that HHV-6A reactivation in certain subsets causes mania and suicide. We now have strong evidenced based science pointing to HHV-6A being associated with Cancers. There are 20-30 open scientific links associating Autism/CFS/GWI/Lyme with well known and notorious diseases. We are in the same family with many diseases. We are no longer just a group, we are no longer just a name, we’ve now become a family. Viable  scientific studies now provide compelling links and associations that present  a successfull winning  political argument that we are  One Family and have  One  Cause.  THIS IS ONE FIGHT.

Never in the history of the United States has a Civilian Group Fought for a Health Issue for The United States Military. Because GWI is so closely linked with CFS/Autism and Lyme Diseases, history is about to be made. GWI research holds great and enormous potential for contributing keys to unlock the mystery for Autism/CFS/Lyme; furthermore, all four diseases combined have the collective knowledge, perserverance and resources to aid each other for not only discovery, but for viable treatment and prevention options.

Reflecting upon the past 12 months and all that has transpired amongst these four diseases, when all four groups unite, their stories look the same. All four diseases experienced: 1) a lack of funding; 2) the lack of rights to testing; 3) epidemics skyrocketed; 4) research studies were cut off; 5) political suppression; 6) patients wait years to see a doctor to get diagnosed; 7) patients are discounted, isolated and devastated economically.

Suicide has skyrocketed in GWI and CFS. Autism is still diagnosed under the Psychiatric Diagnosis Criteria instead of the ICD (International Classification of Diseases). Autism and CFS are being treated as a behavioral syndrome instead of a biological disease. CFS is now costing the United States Economy 80 Billion Dollars per year to treat in medical costs alone. Non deployed active military are now contracting GWI and family members are now presenting with illness. Lyme Disease has recently been declared “a public health crisis” due to the epidemic across the entire State of Massachusetts.

Many people are perplexed by “How to shift from Underdog to Winner” in our situation.  To strategize for this involves a unique understanding of Human Vision. The Tapetum Lucidum is present in the eye of many vertibrate animals. This trait reflects visible light back through the retina and contributes to superior night vision in some animals. “Eyeshine” is something most people have witnessed. When the light hits the eyes of the animal at night, the pupil appears to “glow”.

Although Humans lack the Tapetum Lucidum, we hone our night vision skills through nutrition, training and high tech equipment. We have figured out how to achieve night vision with great precision. Figuring out how to shift from underdog to winner involves Vision, Unity and Political Action.

Blake and I have had to look at this  problem of our illness with respect to;  how to solve our dilemma, against all odds. What we have found, is that this is an EVOLVING medical journey, thus we remain flexible.

 Blakes’ HHV-6A Titers have now dropped from 5x positivity to 3x positivity after 26 months on Valcyte. His EBV Titers still remain too High, although they have reduced. He is going off Valcyte next week and he will be starting Valtrex at 1000mg 2x per day. This second anti-viral treatment approach is based soley on Blakes Individual Medical Profile Needs.  He will also be adding in a new medication to boost his immune system. He is up 30lbs, has grown 2″ and his foot size is nearly back up the 1.5″ it shrunk. He has little to no Orthostatic Intolerance anymore. He rarely has chest pains. He is getting a 3.0 gpa attending college while taking 7 units. He is at 65-75% max on his best days. Considering he was at 5% when he started Valcyte, this is  a  miraculous improvement. He is still intolerant to any form of exercise or mental duress. Pathogens have now surfaced in Blake. Coxsackie, Chlamydia pn., Echovirus 7 and VZV Virus. We suspected pathogens to surface once the legs of the viruses were weakened, thus  we calculated for phase 2 and phase 3 of treatment.

Our greatest gift as patients that we can give to ourselves is the “gift of knowledge”.  Knowledge comes from evidenced based facts, yet we base our decisions on both our knowledge and our intuition. If we loose sight of the fact that we can create anything we want, we loose hope. When we loose hope, we remain the underdog.

The one thing I realize about being an underdog, is to always remind myself to utilize skills, tools and ingenuity in order to soar to an aerial view for a fresh look. Its’ that “fresh look” that gives perspective when one deals with a unique and evolving issue. It is certainly NOT easy as a patient to climb up That Hill for that type of an aerial view; yet one must climb in order to “summit”. Political action for these four diseases is going to take a unique and historic type of unity. Although the landscape of that unique unity remains to be seen; the “summit” is in plain sight.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

GODSPEED.

JULIA  HUGO  RACHEL

VERY LUCKY GIRL ON VALCYTE

At The Heart Of Our Fight

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Julia Update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

The Merriam Websters definition of an “OUTLAW” is 1) a person excluded from the benefit or protection of the law 2) a lawless person or a fugitive from the law 3) a person or organization under a ban or restriction 4) one that is unconventional or rebellious and 5) an animal (as a horse) that is wild and unmanageable.

It is the descriptions mentioned in numbers 1, 3 and 4 above that resonate with patients whom have been diagnosed with GWI/CFS/Lyme/Autism and the Pathogens that piggyback with these Viruses.

We patients have been excluded from the benefit and protection of the Law by being denied the scientific, societal and medical confirmation that our illness even exists on a biological level. The external ramifications of these exclusions include economic, societal and psychological impacts that have created massive loss to our patient population who have been denied employee, disability and other social program benefits. We  Patients have been under a ban and/or restricted individually and as an organization because our illness was of unknown etiology and was categorized by many entities as  “Psychosomatic” instead of Biological.  As a collective whole; I consider every one of us afflicted with these Diseases to be an “OUTLAW” in the sense that we have adapted to become unconventional and rebellious in order to gain medical knowledge with our ultimate end goal to be viable treatment options  for CFS/GWI/Autism/Lyme.

In The Porsche Club of America, we commonly call it “an illness” when a member is bitten by the Porsche Bug. It is more than a passion, far from an addiction and for some an obsession is formed.  I learned how to drive these cars on rural back roads and up long treacherous dirt ranch roads until I could get my driver’s license at the age of 16. From then on, it has been one of my greatest passions. I drive them hard and I drive them daily. No weather is too inclement for me to take on in a Porsche. It is no wonder that I love to Rally Race.

I’ve been a Porsche Purist since the bug bit me. I like Vintage Cars, matching number cars with matching numbered engines and I pride myself on the knowledge I’ve gained by watching, listening and paying attention to top Porsche Gurus on the West Coast since the age of 9 years old. I’ve also learned allot about these cars by Trial and Error and through Breakdowns.  “Oh have there been so many breakdowns”. Through these breakdowns, I’ve learned to research, diagnose and fix some of the common and not so common problems that arise in the 912’s and early 911’s.  I like my cars fast and the mechanics in near perfect order, but I shy away from the Concourse or “pretty” category. I’ve always been an outlaw with my cars. Until Recently, I would never have considered altering a Vintage Porsche in body form nor would I consider deviating from their original engine nor technical specifications.

After touring the infamous Emory Family Porsche Facility a few years back during an emergency pit stop for a part; I was initially shocked and aggravated at their projects involving deviation from the Original Vintage Porsche to the creation of an “Outlaw Porsche”.  I was however, immediately struck by the incredible generosity of the Emory family, their incredible craftmanship work, their noticeable affability, genuine authenticity and their awesome Iconic Legacy of Porsche Greatness in this Family. At the time, I just could not wrap my head around what I thought was “destroying a Vintage Porsche to create what I perceived as a Monster.” I felt that Outlaw Porsches were irrelevant and not in alignment with what a “True Porsche” should be.

Recently something snapped in me and I changed my mind. Something pushed me over a mental edge that created a shift in my old thought patterns and paradigms about how my cars “should be”, how my life “should be” and how I “should” live my life.

Partly due to dealing with ramifications of my health over the past 30+ years from this illness and in larger part having witnessed and been caretaker for my son Blake with this  CFIDS  for the past 7 years;  I have found that I’ve become more accepting of change, progression and of  breaking out of “my” box.  This acceptance occurred through the knowledge I’ve earned and gained by way of a tough medical journey that has taught me to embrace my Outlaw Character.

What I once dreamed and imagined; I now realize does not exist as I thought it did. Having a gravely ill son or daughter does something to a mother’s heart, which can never be replenished. I needed to take some time to acknowledge this loss and grieve for the life that Blake and I  have endured and for the amount of time and quality of life we have “missed out on”.

 If we are to survive these diseases, I truly believe every one of us needs to gravitate towards researching, diagnosing and seeking treatment for themselves. Left unchecked, these viruses and pathogens  will not disappear on their own and no amount of band-aid medications will consistently improve the quality of the patients life long-term.

Shooting straight from the hip; our lives are at risk. With my future discussions of gram-negative bacteria, this point will hit the nail on the coffin even harder. We have at most, a decade to figure out these diseases, how to treat them and how to get every infected patient worldwide diagnosed and treated as well as work on prevention. We are in a race for time as the Viruses and the Pathogens which they fuel are going to be dangerously hard to treat. We are in a catch 22 in that we must get funding for Research Studies on a Biological Level in order to further our goal to get patients diagnosed and treated.

HHV-6A is a virus that is hard to detect in the blood. Since the only scientific published paper on the Link between treating high titers to HHV-6A and EBV  used Focus Laboratories as their testing guide for the study; then this is the lab (or their parent company Quest Labs) that can now be accurately relied on to provide the blood test results with proven measurements for diagnosing and treating this Virus.

It is believed that up to 70% of  CFS  patients have 3X or Greater Positivity of the HHV-6A virus and this viral reactivation cycle is not normal within the mass population.

 HHV-6A has also be linked to Gulf War Illness, Lyme Disease, Autism, MS, Lupus and some forms of Cancer. We need more  scientific research studies to be conducted to determine  the percentage of patients as well as to determine subsets affected by  HHV-6A , EBV and CMV in Lyme/Autism/GWI . We need more Research Studies to prove efficacy of antiviral treatments in these various diseases.

According to the HHV-6A Foundation, “HHV-6A is the strain most likely to be found in MS, CFS , AIDS and cancer patients. Most physicians do not realize that HHV-6 can persist in a subacute form causing CNS dysfunction. HHV-6 can also cause selective immune suppression and alterations in cytokines that make it more difficult for the body to fend off cancer, intracellular pathogens, viruses and mycobacteria. Finally, HHV-6  has potent transactivating properties that cause it to stimulate other viruses, such as EBV, CMV and HHV-8. “

HHV-6A  is thought to be Pathogenic and Neurotropic which means it is a virus that is capable of infecting nerve cells, hence the Central Nervous System Symptoms seen in patients. Symptoms range from headaches to extreme cognitive decline, speech impairment, tremors, heat intolerance, night sweats, insomnia and sleep disorders, anxiety, light-food-chemical-drug-mold & toxin sensitivities, depression, fatigue, unrefreshing sleep, muscle weakness, joint aches, Orthostatic Intolerance and unfortunately it seems to be targeting the Cardiovascular System as well. Reports of heart problems in patients with HHV-6A is becoming common.

EBV is a member of the herpesvirus family and one of the most common human viruses. The virus occurs worldwide, and most people become infected with EBV sometime during their lives. Transmission of EBV requires intimate contact with the saliva (found in the mouth) of an infected person. EBV can infect a number of different cell types, including B cells and epithelial cells. Under certain cases it may infect T cells, natural killer cells and smooth muscle cells. Infecting both the B cells and the epithelial cells is part of the viral normal cycle to persist.

As far as treatment goes; there have been no concrete scientific studies proving that anti-viral therapy will permanently reduce Viral Titers of HHV-6A and EBV. However, recently published scientific studies and past scientific knowledge tell us that we have a fighting chance to fight viral reactivation by using strong antivirals for a period of time; followed up by long-term use of milder antivirals.

Valtrex is an anti-viral used to effectively treat Genital Herpes. Valtrex has been used to lower EBV with spotty results showing patient titers dropping anywhere from within 3-15 years of constant treatment. Neither long or short-term efficacy  has  been scientifically proven for Valtrex on EBV and it will not work on the HHV-6A  or CMV Viruses.

Valcyte is a stronger anti-viral and has been proven to lower HHV-6A and seems effective in lowering EBV titers as well. Valcyte is the only known treatment for the CMV virus. Valcyte treatment lasts 12 months or longer depending on the individual.  Acyclovir or Valtrex are antivirals used long-term as follow up treatment after Valcyte.

All of us on Valcyte Treatment  understand that Initial findings show promising results for certain subsets of  patients taking Valcyte. Length of time to stay on the drug and long-term efficacy is Individual.

My son Blake had no choice in treatment options at the time that he started Valcyte. Faced with entering The Hospice Program and the realization that his body was rapidly shutting down;  his decision at 19 years old to begin Valcyte Treatment just shy of his 20th Birthday was his only ray of hope for life.

After 20 months on Valcyte, Blake is no longer in critical condition. His condition remains guarded with prognosis undetermined. His HHV-6A and EBV viral titers are lowering on the Valcyte Treatment.  He has regained the ability to attend college successfully part-time and manages small daily chores. Twenty months ago, Blake was completely bedridden. He has  now gained 20+ lbs. He has another 25 lbs to gain. Cognitively, vast improvements have been made and he no longer experiences the Orthostatic Intolerance 90% of the time and his heart condition is improving. Improvement with all symptoms are greatly noticeable; yet the recovery seems slow going to a young adult who wishes so much to participate in life at the athletic and cognitive level he had once maintained and was highly recognized for.

Many CFS , Gulf War Illness, Lyme and Autism patients are still coming out of the dark ages and searching for Doctors who can help them with viable treatment options. Patients are confused by Doctors comments about our diseases and lack of  biological knowledge. Mainstream Doctors are Flying  Blind as to what steps to take, when to take them and how to take them in order to diagnose and treat us. As a result, a majority of the patient population goes to extreme lengths to get medical care plus goes from Doctor to Doctor in an attempt to get answers, a diagnosis and treatment.

 I am appalled that it took over NINETY-NINE doctors visits and over 5+ Years to get Blake diagnosed and treated.  We are not the only ones to go through this, which makes this statement even more appalling. There are MILLIONS of us.

If you are a CFS/GWI/Autism/Lyme Patient and have not been tested for HHV-6A, EBV or CMV by Quest or Focus Labs and you wish to be tested for these Viruses; you have the right as a patient to request that your doctor orders these blood tests for you.

I’ve learned allot by being an outlaw with this insididious medical journey. It is with  an Outlaw Spirit that I traverse through this maze of Illness. I learned through trial and error that we did not need to travel across country and go to over 99 Doctors Visits to get Blake diagnosed. I learned that I have the right to ask my MD/GP to run the known blood tests for these viruses and infections if this illness is suspected and all others are ruled out. I’ve learned that our Endocrine System needs to be checked by a licensed Endocrinologist if you have any familial history of  Thyroid Disorders. I’ve learned that the joint and muscle pain that can go  hand in hand with these illnesses  needs to be diagnosed and treated by a licensed Rheumatologist.

 I’ve learned that I don’t need to tell my illness story at length to any new doctor unless they understand and are licensed to treat an infectious disease. I’ve learned that a Doctor who has experience in treating AIDS patients is a likely bet to help out with treating with Antivirals and Long Term Antibiotics for piggyback Pathogen infections such as Chlamydia Pn. and Micoplasma Pn.  in CFS/GWI/Autism/Lyme  patients. I’ve also learned that Roche Pharmaceuticals has a program to help  patients obtain Valcyte who would otherwise not be able to afford the drug.

I’ve learned that the first step in treating our  illness is to get your blood tested. I’ve also learned that these are  infectious diseases;  we must take precautions as to not infect those around us.

 Below is a list of blood tests commonly ordered to assist in diagnosing infected patients.

Viral Reactivation TESTS-

The following Tests are for Quest Laboratories.

HHV-6A, IgG,IgM Ab PNL, IFA

HSV 6 Ab IgG

HSV Ab IgM

EBV Nuclear AG AB

EBV-VCA Antibody IgG

EBV-VCA Antibody IgM

EBV Capsid Ab IgG

Comp Metabolic Panel W/eGFR

CBC w/differential (automated)

Cytomegalovirus antibody (IgG)

Cytomegolavirus IGM

Chlamydophila Pneu Abs

C. Pneumoniae IgG

C. Pneumonia IgA

C. Pneumonia IgM

 DHEA Sulfate

Micoplasma Pneumoniae AB IgG & IgM

Testo, Free and Total LC/MS/MS

Cortisol, Serum LC.MS/MS

C Reactive Protein

The Rest of these tests are FOCUS LABS  (Quest Draws the Blood then sends to their subsidiary Focus Labs.)

Coxiella Burnettii AB

Bartonella IGG AB, IFA

Borrelia Burgdorfgeri IGG AB, WB

LYME Western Blot, Serum

Brucella AB Serologies

Herpes Virus 6 DNA, QUANT, Babesia Serology  

Herpsesvirus 6 AB, IGG - HSV ½ IGM & Type-Specific IGG

VZV Total and IGM AB Panel  

Other Important Tests Include:

Tocoplasma gondii

HSV 1

HSV 2

Thyroid TSH

Free T4 (If Hypothyroidism is suspected)

 Whether you were born with an Outlaw Spirit or have been forced into such a mode by your illness, this journey can be powerful and inspiring. Often times, it is not the person that creates the challenges: But rather the Challenges That Create The Person. An Intimacy is formed within oneself during this process of overcoming the challenges that has been described as “life altering”.

An incredible example of getting intimate with his challenges against all odds is Erik Weihenmayer. Erik was the first blind person to reach the summit of  Mount Everest, on May 25, 2001. He also completed the Seven Summits in September 2002. Erik Weihenmayer is a supreme example of how a young boy handled going blind in his early teens and overcame any challenge put before him to become an Outlaw Spirit for which no Mountain was too High to Climb. Erik was captain of his High School Wrestling Team . Erik is an explorer, an acrobatic skydiver, long distance biker, marathon runner, skier, mountaineer, ice climber and rock climber.

I’ve heard it said by fellow climbers that only 1 in 6 climbers who attempt to summit Mount Everest succeed and that the remaining 5 will likely die trying. If Erik’s challenges could create climbing the most treacherous mountain in the World Blind; Then what can our challenges as CFS/GWI/Lyme/Autism  patients do for us?

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If you have Lyme Disease: PLEASE GET TESTED.

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

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

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

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

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

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

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

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

The Symptoms are:

1) impaired cognitive Function

 2) slowed processing speed

 3) sleep disturbance

4) short term memory deficit

 5) fatigue (profound fatigue with unrefreshing sleep)

6) symptoms consistent with depression.

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

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

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

POSITIVITY IGG AB Titers for HHV-6

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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/Lyme/Autism 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 1^st 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/Lyme/GWI/Autism  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/Lyme/GWI/Autism,  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/GWI/Lyme/Autism,  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/GWI/Lyme/Autism. 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