“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:
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Diagnosis and treatment for viruses and pathogens associated in each one of these diseases.
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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.
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Diagnose and treat the dysfunctional immune system.
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Diagnose and treat the endocrine and rheumatoid systems.
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Diagnose the gut system; test for pathogens and treat these.
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Assess the reproductive system of patients and treat if affected.
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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.
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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.
