Viral Jungle Terrain. Navigating CFIDS/GWI/PTSD Diseases.

“At the going down of the sun and in the morning; We will remember them.”

~ Laurence Binyon’s WWI Poem

“For the Fallen.”

When we experience great loss, we have a choice in how we respond. We can choose to follow our fallen or losses; or we can choose to hone our focus in order to move forward.  I respectfully choose to move forward in honor of those fallen and in spite of any losses  experienced.

Honing focus takes training, experience and the will to do so. If I lose or shift focus, my goals are not met. What are the common goals that link Autism, CFIDS, GWI, Epilepsy and Lyme? These diseases have been proven to be scientifically linked and associated through the same and or similar viruses, brain abnormalities, immune dysfunction, gut pathogens, heart abnormalities and genetic predispositions; amongst many other biological factors.

It looks as if  common goals for biological care include but are not limited to:

    1.  Diagnosis and treatment for viruses and pathogens associated in each one of these diseases.
    2. Get appropriate care for the brains of these patients; such as High Resolution specialized MRI’s and Medications that will help heal the brain and central nervous system.
    3. Diagnose and treat the dysfunctional immune system.
    4. Diagnose and treat the endocrine and rheumatoid systems.
    5. Diagnose the gut system; test for pathogens and treat these.
    6. Assess the reproductive system of patients and treat if affected.
    7. Test for nutritional deficiencies associated with cellular and gut malabsorption. Address these mineral and vitamin deficiencies with a licensed DO or Nutrition expert in order to add  high-grade supplements shown to be lacking by blood tests.
    8. Check for PON1 deficiency; exposure to Molds, Toxins, Chemicals and vaccine reactions.

Having said all of  this, it looks as if the entire physical operating systems of these patients needs to be addressed and treated. Treating only one of these systems will likely not return a patient to status quo and this methodology might not  be enough to save a patients life.

It will only be through a collective, combined and collaborative effort across a broad spectrum of specialties that patients of these diseases will heal. Too many systems of these patients are being affected and degraded. It would be nearly impossible to have one doctor capable of addressing so many different multi system dysfunctions across such a broad spectrum of specialties. Specialists from divergent fields are needed in order to treat all patient systems for optimal health.

Unfortunately, medicine alone will not prevent these diseases from escalating nor will it help to heal patients. Political action needs to take place in order to ensure  protection and progress for these patients. Progress in research and treatment has been backlogged, halted, diverted and prohibited in some cases due to the siloed factor. The only method to untangle this debri field successfully is through political action.

Epilepsy has not seen a new treatment drug in nearly 50+ years. Epilepsy is prevalent amongst patients across all of these diseases. Outdated, archaic brain surgeries are still being performed on some Epilepsy patients.

Autism is escalating at an alarming rate and is highly associated with families having CFS and GWI. Lyme disease is intertwined with CFS, GWI  and Autism. Ticks now carry all sorts of different types of pathogens such as Micoplasma plus tick borne pathogens that have not even been named as of yet. Lyme families experience higher rates of Epilepsy, Autism and CFIDS.

Gulf War Illness is flip-flopping all over the map. It looks as if there is absolutely no good treatment centers or forms of treatment for GWI. Soldiers and Veterans are left behind with no available treatment options in sight.

CFIDS has made some leaps and bounds but has also been thrown some horrendous red flags by agencies playing “referee” in a game they know nothing about; or pretend to know nothing about. Case in point; the name of CFS is completely wrong, the approach  for treatment is wrong, the image is wrong and the hysteria is correct.

Categorizing Autism and busting up ASD’s into segmented disorders is another example of  diverting a serious biological illness into a DSM category.  By deliberately  labeling ASD’s as psychosomatic disorders  instead of  factually categorizing these  as the proven biological  diseases they are,  is a violent disregard of human rights. Public safety is at stake  and the national economy is at risk by not treating these biological diseases.

The U.S. Government spent nearly 300 Million Dollars in litigation arguing that “Gulf War Illness does not exist”. The debate was settled in court. GWI exists and is related with CFIDS and Autism by infectious common denominators. GWI is now showing up in non-deployed soldiers and their children have higher rates of Autism.

Lyme disease communities have fought hard to get their disease recognized and labeled as a biological disease. Pathogens, viruses, immune dysfunction and brain abnormalities will continue to rise within Lyme disease unless all body systems affected are addressed. Lyme disease is no longer about “the tick disease”. Lyme now ranks in the neurological, infectious, and immunity specialties.

Autism, CFIDS and GWI hold keys of research and discovery that Lyme Patients need for optimal treatment and prevention right now.  New information is emerging that  tick borne pathogens are being carried by vectors other than ticks. Lyme is progressing to a new level; which translates to new sources of threats and areas of contagion.

Because these diseases are so strongly intertwined and scientifically linked, because these diseases each hold a piece of the puzzle needed to help one another progress,  because these diseases are deliberately being overlooked and separated from each other in a “siloed” situation; collaboration and political action needs to take place in order for immediate progress to occur.

Long time advocates like  Marc Iverson, John Herd, Pat Fero, Erik Johnson, Hillary Johnson  and all of the dedicated advocacy groups, 501C3s, Organizations, Websites and Facebook Pages have kept this ball rolling.

It is the combination of all of these Advocacy Voices and Groups (and more)  whom have ” held and lit the torches”  which continuously ignited the perpetual  REFUSAL to let this cause for action be forgotten.

Lest anyone think that our fight for research, diagnosis, treatment and prevention is in a “discouraging era”; you are mistaken.

Jungle terrain navigation is survived by fierce warriors. Inch by inch, tactics of the highest caliber must be learned, practiced and employed in order to survive.  Successful exit from a jungle takes skills, strategy, unconventional tools and wisdom. Navigating Autism/CFIDS/Epilepsy/GWI and Lyme will take the same sort of innovative tactics.

The only way to achieve progress for research and treatment on a viable scale, is through national political action. Our diseases need a game changer by utilizing national and international  political action with the goal to benefit medical progress for the justice of the patients of these diseases that have been oppressed.

JULIA HUGO RACHEL

Very Lucky Girl  on Valcyte

Blake Update: He has Gained 12 lbs this summer (that is a total overall gain of 35 lbs, with 20 more lbs to gain). He is off Valcyte and is now  on long-term antivirals (Valtrex). He is stepping up from Junior College Level to University Level. His major is in Physics/Engineering and Military Science. He is going to try to attend University 3/4 time with support from the disability department to help him with his cognitive issues. He has hopes of adding back physical exercise within 18 months. We now have hope for a 90-100% recovery. Without a doubt, Valcyte treatment saved Blake’s Life. We now work on Phase 3; the Immune and Nutritional and Lifestyle systems. “Inch by inch” we work towards healing and recovery with this illness. Blake still has days of being bedridden. I would estimate these run from 1-3 days per month. All Orthostatic Intolerance is gone after the Valcyte treatment. We keep an eye on his DHEA levels as he gets migraines when the DHEA is low. Blake has shown up with 5 different underlying pathogens. We will report on treatment for echovirus B, VZV, Chlamydia PN., etc on the next report.

I encourage everyone to get tested for the viruses and pathogens known to be associated with our diseases. (These are listed in our prior blogs.) Getting tested is a step that can be taken right now. More Doctors and Physicians across the country are prescribing antivirals and antibiotics to treat these infections right now. I have heard from New York, Texas, California, Nevada, Arizona, New Jersey, Florida, Washington State, Oregon, Virginia, CT, Washington DC,  Hawaii and many other States that patients are getting treatment for their viral and pathogen Infections RIGHT NOW. Although more phases of treatment are needed, this is a treatment avenue patients may take right now should they choose to do so.

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