Man Down. Millions More Going Down from PTSD/CFIDS/TBI

June 28, 2012 at 7:28 am (CFIDS, CFS, First Responders, Genetic Illness, GWI, Medical, Medical Blog., Military Service, Pediatric Illness, PTSD, TBI)
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If I only knew 10 years ago what I know today, so many  lives would be changed and more might be saved.  

The shock and awe of watching somebody you love get eaten up by a  mystery illness is overwhelming and  frightening.

We train so hard to be the toughest, to know how and why to be the best. When something unknown explodes in life and there are no tools to put the pieces back together, what do you do? How can one do their best with zero?

During the past decade, we learned how to create our own tools and survive. At this point in Blake’s recovery, we could easily lace up our boots, stand  straight and never look back at this issue.  Except for one thing: the man down was my son and the millions more falling are children and soldiers/warriors. We don’t leave anyone behind, that is unacceptable to us. We walk towards the fight, not away. We have learned  a few tools and we can  now hunt for more solutions. Walking away is just not an option for us. Our goal is to help others by sharing our journey.

HHV-6 is a virus that attacks the brain. Although most people carry this virus in their body in a latent status, what they do not know, is that it is like a grenade waiting to go  Rambo at a given chance. This virus “reactivates” which means that when a human is hit with a bacteria, gets a severe flu, catches a pathogen in some 3rd world country or undergoes a physical injury or a TBI trauma the grenade  pin  might get  pulled. The human body is then  weakened just enough whereas  this virus  starts  replicating. HHV-6 virus has been linked with Multiple Sclerosis, ALS, Chronic Fatigue Syndrome and some Cancers.

We have scientific proof linking HHV-6A to these diseases. This does not mean this virus is the sole cause of the disease; but  what it does mean is that the patient  has a shot at  better management of disease in CFS and PTSD by treating the  HHV-6A virus  if it is is present in high viral loads by  getting  it  lowered to  within  an  acceptable  and  safe  range; so that underlying disease can be better addressed.

HHV-6A virus loves to hang out with the Epstein Barr Virus (EBV) as well as a stealth bacteria called Mycoplasma. They sound benign, but these are stealth pathogens and cause destruction to organs and the immune system. This may not mean much to you, but you might be surprised to learn that these 3 partners are rampant within the military, are possibly contagious  and may be linked with suicide and  PTSD.

 HHV-6 has been proven to be linked with schizophrenia and suicide. Viral antibody titers have been proven to spike  dramatically around 6 weeks prior to suicidal  behavior.

When Blake first got hit with these viruses, his “mood and character changed noticeably”. I mentioned this to doctors and they sent Blake for a psych exam and prescribed him antidepressants. Had we caught this one small  “tell-tale sign” at early onset;  we would not have  needed  to  visit  100  specialists,  spend  a  quarter  million  dollars and  stare  at  the  edge  of  death  for  years.

This virus likes to tango with  testosterone and cortisol.  We are seeing suicides in men from the ages of teens through late 40’s. This could be due to the fact that men have testosterone and cortisol changes/activity  occurring  around  those  ages.

If the virus is in reactivation mode, many antidepressants will work against the patient instead of for him/her.  This is because the patient is not clinically depressed, but rather  is suffering from a brain disease. Psychologists and antidepressants are useful; but only in tandem with addressing and understanding the underlying brain injury factor. The brains of those with TBI’s and  brain virus need to be monitored by neuropsychologists  who  are  skilled  in  brain  trauma  and  healing. Until those specialists have assessed the patients brains, psych medications should not be randomly prescribed.

 The virus attacks the brain in a way that shuts off the inherited survival and will to live trait. It can cause unnatural behaviors in people who would normally never consider suicidal thoughts. The virus seems to hit the body hardest after the initial assault when a  patient  is pushing themselves to their emotional and  physical  limits; not knowing that their body is in trouble.

During combat, extreme athletic training or when recovering from an injury; the body is normally in replenish and heal mode during down or sleep time. However,  if  a  virus is escalating  in the blood  and the person is pushing it to the limits; normal replenishment cycles malfunction. As this cycle continues, the  brain  disease  targets  areas  of  the brain thereby possibly wearing down systems and  fostering suicidal tendencies.

One sunny day as I was heading out to the horse  pasture, I looked  in Blake’s window  and  witnessed him with a loaded shotgun. He was sitting on his bed, he had a  glazed and blank expression on his face. It took me a split second to figure out that I couldn’t run fast enough to get to him through the back doors of our house before he pulled the trigger. In the next hair of a second, I was tearing  at  a screen and hurling myself  through  a  4×6 ft.  window.  At that point in time, nothing mattered to me except for getting that gun out of his hand. I was able to accomplish  that mission without any shots fired. Blake is alive and well today. Yet every time I read a Military report on our suicide numbers my heart  fractures just a little more. Every casualty reported (and we know how many are not reported), news report and every email or call I get about this issue; never gets easier. This is one of the main reasons we are lacing our boots tighter, standing  straight  and  walking  towards  you  for  support.

PTSD awareness is on the tongue of many right now. We know this is stress related, but what we didn’t know is that some, or many of these cases might be related to HHV-6A, infections and/or Traumatic Brain Injuries. When we look at high-resolution MRI’s of these patients with HHV-6A, white spots are seen on the brain.  These spots can be caused by this virus. The spots can go away with anti-viral treatment.

New studies using experimental positron emission tomography (PET) tracer can effectively diagnose concussion-related brain degeneration while a person is still alive, effectively diagnosing CTE in the living patient. This new technology is redefining the way we view TBI’s and the symptoms that have been sometimes been labeled as PTSD is TBI Patients. CTE Treatment is an emerging field, with Mount Sinai leading the way in new discoveries.

The only known medication scientifically proven to effectively treat HHV-6 is an anti-viral named Valcyte. In a 2006 research study, Valcyte was found to be effective in lowering HHV-6 titers in a subgroup of patients having high antibody titers to HHV-6 and EBV. If a PTSD patient also presents with high Viral titers of HHV-6, it is possible to treat the virus, thus unravelling and alleviating symptoms for the patient related to high viral loads.

Why does this matter? Because this information could help save lives. If you notice 3 OR MORE of the symptoms below, please read our prior blog called “Getting Intimate with Your Viruses Part 1 & Part 2”.  The tests and tools listed in that Blog took us 10 years to figure out.

Symptoms to look for include: 1) Change in moods or outlook in  life; Anger, Depression. 2) Fatigue with unrefreshing sleep. 3) Insomnia 4) Memory loss. 5) Cognitive decline. 6) Migraines. 7) Weight loss 8) Flu like symptoms that linger 9) Joint/Muscle pain. 10) Very low blood pressure.

Sometimes all we “see” is the depression or a “character change” at first onset in our loved one. But if you can look beyond that and notice any other symptoms noted above, you then have biological options to research. The sooner you catch any viral or bacterial infections or recognize a TBI;  seek treatment and  the  greater  your  chance for a successful and timely recovery.

We have 10,000 disability claims filed to the VA each month. We have unusually sky-high suicide rates. We are looking at high numbers of deployed coming home within the next 18 months; which some predict up to 50% could be afflicted. All three of these groups need to know that if they present with 3 or more of the symptoms above, they have the right to a blood test for viral and bacterial infections as well as tests for TBI’s. These are high risk groups that need support and treatment immediately and are rampant in our Military.

It is up to us, toolbox in hand, to be walking towards those that need us. Please support those at high risk because very few,  if any,  are getting the support they deserve and need.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON  VALCYTE

(Updated 2018)

 

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Code Talkers. Deciphering GWI/CFS/CFIDS/PTSD Diseases

November 25, 2011 at 9:57 pm (#GWI #PTSD #CFIDS #CFS #ME #TBI #SuicideFacts, CFIDS, CFS, GWI, Medical Blog., Pediatric Illness, PTSD)
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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 notch 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,InfectiousDisease, 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 human tissue repositories. The key to discovering etiology and behavior in these diseases probably lies in the studies which must be done in the tissue.  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 interests 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, thus  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.

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  for 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

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