SEEING RED. VIRAL. GWI/CFIDS/PTSD

“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

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