Battling CFS/CFIDS/GWI/PTSD Disease. Romulus and Remus.

Romulus & RemusI was drawn to post Romulus and Remus as the theme for the 2nd Blog on VLG on Valcyte. But Why?  What do Romulus and Remus have to do with our Journey with Lyme/GWI/CFS Diseases and HHV-6A, EBV, CMV and coexisting pathogen infections?

I was afflicted with Mononucleosis at the age of 15. I stopped participating in competitive swimming and equine events shortly thereafter. I was able to resume both sports for sustained periods of times, although never at my ultimate peak. Although my energy level and mental acuity were slowly declining, I kept on trucking. I was still active in the business and farming enterprises. An industrialist and “go getter” since birth, my parents and social set noticed my decline but thought it due to “lack of ambition/motivation”. I did not know what to think. Doctors were not standard protocol in my family. The only time I ever went to a doctor was when I broke a bone riding horses or needed stitches. I never knew the word “illness” growing up.

 I knew that something was drastically wrong with my body and health after having Blake. Child birth has triggered a more fierce comeback for my CFIDS.  Re-current infections started the cycles to come.  I was constantly getting bronchitis, ear infections, stomach-aches, extreme swelling and fatigue. Over the next two decades, I would be diagnosed and subsequently treated for Endometriosis, Genetic Pancreatitis (mis-shaped Pancreas), Interstitial Cystitis, Psoriatic Arthritis, Hashimoto’s  thyroiditis  with Calcifying Goiters and high blood pressure. I was thought to be “neurotic” by my family.  I was the star athlete who lacked ambition/motivation because I refused to go to college, refused to swim and  refused to compete with my horses. What the family could not understand is that I was not refusing but rather my body was quitting.

 Over the 30+ years since this all started, I graciously accepted the glaring looks from the family, I tolerated the innuendos from the athletic communities and I grimaced at the educational opportunities I missed out on. I endured the situations and tried to live my life in peace and harmony; all the while enticing my body to be better, to get stronger, to do more with the heightening scope of daily pain and fatigue I experienced. At the same time, I tried to survive the constant drug treatments given by my “team” of  5 specialists fighting to keep me upright and mobile with so many autoimmune diseases. I endured all of those painful years with a polite character.

 My polite character tactic changed a few years after Blake became ill at age 14. I then became a true warrior. I fought to get him treatment and I crossed battle lines in the social, medical, familial and societal systems that I never dreamed existed. I never rested, I never stopped and I fought for blood. My blood, my son. If anything or anybody stood in my way, they became history to me. As I mentioned above; at first I was amiable, I was conversational and I was pliable. I pleaded his case of extreme fatigue, isolationism, cognitive decline, mood changes, migraines, lethargy, muscle weakness, low blood pressure and intolerance to heat, physical and mental exertion to anyone I came into contact with.

When I noticed that this tactic was completely futile and exhausting, I became aggressive. Once again as history repeated itself, the family promoted “lack of ambition/motivation” for Blake. They even blamed me for his dilemma. He quit FIVE sports that he had successfully played first string, he quit school, he stopped socializing, he lost weight and he DID NOTHING all day long but stay in bed. Therefore, this “behavior” was the sign of bad mothering. As long as the biological factor for Blakes’ illness remained undiagnosed, I was thought to be the culprit of my sons’ poor health. Even after Blake was diagnosed by a highly reputable global institution, an entire side of our family still refused to believe his illness was biological. They blamed me.

 Hence, enters CFS/CFIDS, HHV-6A, EBV, CMV viruses and multiple pathogen infections diagnosis.  Followed by treatment with Valcyte. These words sound so simple, so benign. Like the word Rome, these words just roll off the tongue as if to say “Whats’ the big Deal Here?” Acronyms and a one-syllable word. Big Deal!

 The big deal here is that these Acronyms have crossed medical battle lines and are now in a war zone. We are not sure how far these viruses and pathogens will go in their love of eating away the central nervous system of its’ host. Even worse, we are just beginning to realize the externalities of allowing these viruses/pathogens to continue for years and even decades in a patient’s body. We are just beginning to understand that these externalities include some autoimmune diseases and certain forms of Cancer. Also included in these externalities are the astounding financial costs/burden to society. Lack of funding, lack of societal and medical awareness plus  lack of  knowledge on how to properly test and diagnose for the HHV-6A, EBV, CMV and associated CFS/GWI/PTSD Diseases have created a climate for those afflicted that can only be described as one in which Romulus and Remus survived and died in.

 Born as Twins, known as Romulus and Remus. Fathered by The God of War – MARS. Sons of Rhea. Ripped away from their mother. Cast to Death due to fear of what they might achieve, accomplish or what their destiny might behold. Kept safe by the River deity Tibernus. Rescued by the roots of The Fig Tree, Ficus Ruminalis.  Then raised by an “Earth Mother”, sometimes called a Wolf-Goddess. They built walls together in anticipation of a great city. Romulus slew Remus in a dispute over this newly yet not named City. The city is named Rome. Romulus becomes the First King of Rome.

 Romulus was a horseman, a martial man and a strategist. He formed a special military unit and although he lost a few battles along the way, he never lost a single war in which he fought. As one myth has it, Romulus ended up dying or ascending to Heaven with a super natural disappearance during a super natural storm. It was in his 38th year that he disappeared, supposedly July 5th.

 Those of us battling these diseases and/or HHV-6A, EBV and CMV infections have a few things in common with these twins. Romulus and Remus have always been “myths”. GWI/CFS/CFIDS/PTSD diseases have thus far been treated as  myths. Romulus and Remus were thought to be feral children, “Those children left of all human contact”. Our diseases by nature lead those afflicted to a sudden isolationism from mainstream society.

 With the 1988 discovery of the Murus Romuli, (the defensive wall built when Rome was founded) on the North Slope of the Palantine Hill, it is thought that concrete proof now exists of Romulus as a historical figure.  We now have concrete proof through studies that HHV-6A, EBV and CMV Viral Infections are connected and intertwined with CFIDS/GWI/PTSD illness. And just like Rome was originally composed of outlaws and fugitives, those of us battling these illnesses have been treated as such.

 I commend all  who are battling these diseases.

 JULIA RACHEL

VERY LUCKY GIRL ON VALCYTE

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