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

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/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, Autism, ALS, Chronic Fatigue Syndrome,  Lyme Disease,  Gulf War Illness  and  PTSD.

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 recovery by treating the  HHV-6 virus  by  getting  it  lowered to  within  an  acceptable  and  safe  range.

HHV-6 virus loves to hang out with the Epstein Barr Virus (EBV) as well as a bacteria called Mycoplasma. They sound benign, but both 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 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 the highest percentage of suicides in men from the ages of teens through late 20’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 neuro immune 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.

 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 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 in his mouth. 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.  double pained window.  At that point in time, nothing mattered to me except for getting that gun out of his mouth. 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; tool  trucks  in  tow.

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-6 and/or Traumatic Brain Injuries. When we look at high-resolution MRI’s of these patients, white spots are seen on the brain.  These spots can be caused by this virus. The spots can go away with anti-viral treatment.

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.

Why does this matter? Because this information could 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 at first onset. 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 this virus and  seek treatment, 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 this virus and all of the others linked with it. These are high risk groups.

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.

 Our  team  will  be arriving  with  a  convoy  of  tool  trucks.  (More on that program to come).

JULIA HUGO RACHEL

VERY LUCKY GIRL ON  VALCYTE

VLG on Valcyte has added a complimentary Blog about our Journey Towards Healing.

 Please visit us at: http://juliahugorachelmomentstoremember.wordpress.com/2012/07/05/a-decade-later-a-fresh-start-begins-july-4-2012/

Blake Update: Blake made it through school without missing one day for sick time. This is the first time in 10 years that he has been able to make it through a school term, uninterrupted. He also received a 3.66 gpa this quarter while studying  Physics/Engineering as a major and Military Science as a minor.

Blake’s  weight is at 188 lbs and holding steady; he is 6’2″. He is starting to regain muscle mass. He has  gained back 58 lbs. He looks healthy, yet the cognitive decline is still noticeable when he is tired.

We attribute this remarkable acceleration in recovery to the initial Phase 1 of treatment:  vitamin therapy, diet change and 3 years of Valcyte treatment. 

Phase 2:  has been long-term use of  Valtrex for the chronic EBV. Unexpectedly, an incredible benefit has been weekly IV’s of Vitamins/Minerals and Glutathione administered by a well versed Natural Path. This is not a Meyers Cocktail, but rather a  formula based on Blake’s  needs. We feel these IV’s may be essential for many patients and plan on focussed research on this treatment in coordination with antimicrobial treatments. More information to come on these IV’s. We have heard of great success stories from military and civilian patients  receiving  these IV’s and are excited.  Blake would not  have excelled as much as he has this past 3 months, had it not been from the combination of  holistic and western medical treatments in tandem. This was duly noted and planned  from the onset as Blake needed something to boost the immune system; we  just  did  not  know  “what”  that would  be.

Phase 3:  will be adding cardio physical exercise into Blake’s  routine as well as starting on medication to address bacterium and viruses that surfaced as the HHV-6 and EBV lowered. This is a long distance run, not a sprint. We were told  by our original  Doctor, to be ready for the long haul.  Blake was too far down the ladder.  Thus we prepared for a journey, not a jaunt. Doc warned us that as the HHV-6 was lowered, other viruses that invaded when Blake was so weak would rear their heads.

Blake will try summer school to get a calculus class completed. After that, he has 4 weeks to rest until Fall Quarter.  Blake is taking on a more serious leadership attitude about getting well. He is nearly  independent. He is motivated constantly by the fact that he cannot wait to have 100%  health and to ultimately serve his country.

A few days ago, on a sunny summer day, I took a chance and looked through Blake’s  office window on my way to the vegetable garden.  I smiled.  His stubborn Yellow Labrador was at his feet and I noticed he was intently looking at a video just posted by Mr. Don Shipley of Extreme SEAL Experience. I could tell by the expression on  Blake’s face that he has a new dream. His life long dream changed from going to Annapolis and flying  planes. He switched over to linguistics and jumping  out of  planes.   The  fact that  Blake is  even  dreaming  about  his  future  was  worth  that sacred  glance  through  the  window.

Advertisements

Shooting Straight On CFS/CFIDS/GWI/PTSD

Although we do not have definitive biomarkers for CFS right now, we have proof that two subsets exist within the disease. Up to 75% of  patients  have elevated antibody titers to HHV-6,  EBV  and CMV.

This subset is known as CFIDS.

 We know that these CFIDS  patients  have viral reactivation  and are prone to opportunistic infections such as Mycoplasma Pn., Chlamydia pn., Coxsackie, Echovirus plus  plethora of other pathogens. We are  at the beginning  stages of diagnosing and treating these infections within these patients.

The subset of patients who do not test positive for  pathogens is known as CFS. CFIDS  patients have the luxury of being treated for their viral and pathogen infections, yet CFS patients are left without any available treatment protocol. One protocol that may pan out for CFS patients is Rituximab. Apparently, Rituximab  may work in up to 12% of patients who do not test positive for viral reactivation and who do not have active opportunistic  infections.  This medicine seems to work best on  those patients who previously contracted  mononucleosis; yet  further clinical trials are  needed  to  verify  this  drug  as  a  viable  treatment.

I originally began looking at Rituximab back in 2009 as a treatment for myself.  This was a drug that would have been harmful for Blake, as he had pre-existing infections which precluded him from safely taking this drug. Yet, I  thought it may be an option for me. I was eventually found ineligible for Rituximab treatment  due to pre-existing autoimmune conditions. Although the onset of  my  CFS began with Mono at age 15, I had since acquired 7 auto immune diseases, viral infections and  my body was riddled with opportunistic infections including  insidious blood infections.

When I first learned that Blake could die  from CFS, I sought out a CFS specialist who had access and extensive experience with  the drug Ampligen. From what I had read and “heard through website chats”,  Ampligen was the drug that could cure my son. I  was  extremely determined to get my son on Ampligen,  no matter what the cost was to our family.  On our first visit to the CFS specialist in San Diego I  asked  that  my  son  receive  Ampligen. The  specialist  informed  me  that he would not administer this drug to any of his patients, including Blake. I asked him why and his response was clear.  According to this specialist,  he  had  used  Ampligen  on  many  patients and  all of the patients ended up in worse condition over the long run.  He had known these patients for years and he still stays in contact with those that are alive. This was a drug he had thought would be helpful and one in which he had high hopes for.  This specialist was devastated  when he discovered  patients had long-term negative effects to Ampligen.  At  first,  it seemed  Ampligen  was  a miracle cure for CFS patients.  At first,  patients made remarkable recoveries.  Yet Patients began having severe side effects  and  in his experience, the drug  became dangerous as treatments  continued.

I  trusted  this  specialist  explicitly as he had come highly recommended.  I trusted his opinion  to go with a different drug for Blake’s’ treatment called Valcyte.  In our case, we fit the exact criteria for the Valcyte treatment protocol, so we were in the subset that had a fighting chance for recovery. Valcyte had been FDA approved for transplant  patients  thus we  felt comfortable with the associated risks.  Blake was on the verge of shutting down and we were left with few options. One thing I did appreciate about Valcyte, was that it was not a life-long therapy.

One of the conversations that most CFS doctors do not like to have  with  their patients, is the role of HSV-1 and HSV-2  as  definitive catalysts in  reactivating  pathogens in  chronically ill patients  suffering from infections. CFS/GWI/Lyme and Autism patients have not been properly informed that  if  they  carry HSV-2 or HSV-1 at high antibody levels, they need treatment for these viruses as well  as  their  standard  illness  protocols.  Shooting  straight  from  the hip,  we need to know this  information  if  we are to get  well  from  these  diseases.

The time for the “sex talk has arrived”. The  infamous “sex” talk that has been given by most parents to their children, needs to be given by doctors to their adult patients. If  HSV-2 titers  rise above 3 or more in a chronically ill patients, there  is a good chance that  unless  these elevated titers are lowered with antimicrobial treatment,  the patient may never recover from CFS/Lyme/Autism/GWI or Epilepsy.  What was once thought of as a simple nondestructive STD that warranted treatment when an outbreak occurred;  is now recognized by top microbe hunters as a factor that accelerates and will  fuel the fire in pathogen reactivation  thereby  prolonging chronic illness.

This is the “sex” talk that every doctor in America should be having with their patients, yet mainstream medicine has yet to recognize the role the 8 herpes viruses play and have underestimated their potential to cause and/or ignite disastrous chronic illnesses and further a  pandemic which has begun.

Many Gulf War Illness, Lyme Patients, Autism and Chronic Fatigue Patients do not understand why this  blog has focussed on  tying these particular chronic diseases together as a family. Although we share different genetic findings, although our brain dysfunctions are not exactly the same, although our behaviors are similar yet not exact; we share one thing in common. A high percent of us have elevated viral antibodies, known as viral reactivation to HHV-6, EBV and/or CMV.  We also share many of the same opportunistic co-infections (see previous blog for full pathogen list). These pathogens may be seen in PTSD as well.  We suspect PTSD is a mix of TBI’s, MTBI’s,  stress and  pathogen  infections  leading to  CNS  and  immune dysfunctions.

Whether these infections compound our chronic illnesses; are a starting point for our illness, delay progress in healing from our illness or further our illness to fatality; one thing is for certain. All of us must address these pathogens by getting them diagnosed and treated so we may research and explore all of the reasons underlying our illnesses in order to prevent and cure ourselves and our future generations.

If step One is pathogen testing and treatment, then the following steps will open the doors to discovery for answers and cures. In order to  take Step One,  we must unite as one group to lobby for antimicrobial treatment for this pandemic.  Stop The Pathogen Infections in us; Save the World.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Blake Update:

Blake was hit with an unusual crash during his second quarter at  University. He was able to maintain one class with a 4.0 GPA average,  yet took a drop in his other 2 classes.  He woke up in the 3rd week of school and could not remember what he was studying.  At first, we thought he had a stroke.  He was studying math and engineering but had suddenly lost the ability to recall the theorems and calculations; literally overnight. We suspected PANDAS and had the appropriate lab tests done.  His handwriting had declined and there were behavior issues that were out of character.  If Strep A had been active in Blake’s brain since onset of illness at age 14,  he will still need treatment for this infection. This summer,  he will be undergoing consultation for this issue as well as beginning treatment for chlamydia pneumonia.  He started Trace Mineral and Vitamin IV’s with glutathione 1x weekly. He is also taking Monolaurin and Cortrex for adrenal support.  Blake now weighs 188 lbs and is 6/2″. He has gained 56 lbs.  He is able to walk and swim,  yet he has pressure in his head when he runs.  He is able to hike a few miles without fatigue and is active daily.  He is currently enrolled at University 3/4 time.  With each “setback”, Blake has learned to bounce back by utilizing more resources available through the disabled student program and he is adapting well by learning  from past events.  Strep A in the brain, also known as P.A.N.D.A.S. is thought to be seen in adolescent children only.  However,  we believe if the onset of the chronic illness and infection begins at the pediatric stage, this infection may linger in the patient until it is eradicated.  More research needs to be done on P.A.N.D.A.S.

All In The Frijoles. Healing With CFS/CFIDS/GWI/PTSD.

One of the most intriguing aspects of healing with CFS/ME/GWI/Autism/Lyme is the clear observation that Western Medicine alone will not fully help to heal these diseases. At this point, we do not have the luxury of   “a cure”,  yet we do have the possibility to heal.

 Healing with these diseases is allot like cooking. It is just not ONE thing that will work. In cooking, it is the combination of  ingredients in a dish that makes it go “WOW”.  In our illnesses, there is  no “Ah-ha” moment with a singular healing tool.  To make matters more complex, every patient is unique and needs individualized care.

We know how to treat  and combat the viruses  (HHV-6A, EBV, CMV) and the plethora of infections (See Previous Blogs)  in patients;  but do we know of other tools that are proven to help heal?   YES!

Our familial  healing journey began  3 years ago when Blake was placed on Valcyte. Equally important, prior to starting Valcyte, it was strongly  recommended that he change his diet completely and to report the percentage of  improvement from a diet change alone. The improvement after changing his diet was a definitive 10% improvement. The diet change involved eating “NO”  dairy,  wheat or sugar;  rotating animal proteins at 4 day intervals  and  never  eating a  starch with a protein.  No  packaged  foods  allowed.

We then began the evolving  educational  journey of learning  the importance of  ATP and mitochondrial function within our bodies and  how  critical  of  a role  food plays  with  these cellular  functions.  Nutrition is more than  just  “feeding a body”,  it  is  a complex system involving  a  science designed to allow a body to function.  This complex system promotes repair and healing. Patients with compromised systems need all the help they can get.  Understanding  how  to  nourish  your  cells  for  optimal  nutrient  absorption can  greatly  help a  patient  during the process of  healing.

 It was a wild diet change for Blake who grew up eating meat and potatoes on a ranch. Homemade bread and pies were ALWAYS at his fingertips. At 15 years old Blake was 6’2″, his shoe size was a 13, he weighed 186lbs, was playing 5 sports -varsity level.  He was getting a 3.5  gpa school average.  Diet and nutrition were never an issue for Blake.

 The Nutrition aspect of Blake’s life changed drastically when he;  became ill,  bedridden,  immunocompromised then had a near death experience with this illness.  It was only  after  having dropped nearly 56 lbs, having shrunk 2″ in height, having shrunk 2 shoe sizes, having lost the ability to read or write,  having lost the ability for mobility,  having lost normal vital signs and being bedridden on/off consistently for nearly 5 years that nutrition became a major player for our plan to heal.

 We did as the Doctor recommended.  We began a journey with nutrition that is still evolving.  After 6 months on that strict diet, Blake began adding foods back into his diet.  Three years later, he chooses not to eat anything packaged;  he eats dairy,  wheat  and  sugar  sparingly.

 Blake was also tested for nutritional deficiencies through the Spectracell Blood Assay test.  He was prescribed an enormous load of vitamins to make up for what he was lacking (according to test results).  No matter how well Blake ate,  at that point his body was unable to absorb nutrients he needed by eating alone.  The Vitamin regime was expensive but necessary.  I still consider this tool one of the best  available in combatting these diseases; especially when wasting syndrome is involved (Cachexia).

 As a  young adult patient, stepping up from Junior College, then moving residency and attending University level courses in a new town was stressful  for Blake this past Fall Quarter.  He missed 4-5 days of class during a 9 week period, then crashed one week before finals.  He was bedridden for 7 days straight. During this  “crash”  before finals;  he dropped 10lbs in a week, battled a bronchial infection which went into pneumonia,  his back went out and he was unable to read, write, think or cope.

Luckily, we had a great Ex-CDC employee as Director of  The University Medical Clinic and she recorded the week-long crash diligently. She treated Blake with compassion and great care, seeing him 3 days in a row. Medical records showing  the patients weight loss, vital signs decline and onset of infections is crucial to proveand document  how severe these episodes are.  Finding the right doctors take time.

 The craziest part of a patients life can be during a “crash”.  One moment, all is well.  The next moment,  all goes horribly wrong.

Being a strategist,  I’ve taken a tactical approach. I have this “attack before the illness takes my son down  button”.   As soon as Blake shows signs of decline,  I  am “ON IT”.

 Preceeding and during a “crash”, Blake  becomes belligerent. He  thinks (dreams) he  is still  an athletic and brainiac hero thus is able to overcome any stress, crash or infection coming on. This is a common attitude amongst young patients.  Me,  I know the truth.  I’ve lived the reality of this illness as a patient and as his caregiver.  I’ve been dealing with this disease for 30 plus years in my own body and I have enlisted myself  to combat it in my son’s body.

At times,  dealing and healing with this illness,  reminds me of a war zone.  Yet,  if there is one thing I am programmed to do; it is to strategize and fight. I grew up in a competitive, strategic and industrialist  environment  and  my  tolerance  for  quitting  is  ZERO.

Avoiding stress and anxiety when possible is a  MUST.  If there is a known physical or mental situation or  trigger; we avoid it.  Life happens,  stress happens and at those times we do our best to re-direct and move on.  It is important to get enough sleep, to see a counselor if needed, to keep anxiety levels at a minimum and to manage pain if present.  It is vitally  important to calm down all of the affected systems in order to lead any quality of  life.  We use medication and holistic tools in tandem and on an “as needed” basis.

I was recently researching a food dish using Mung Beans.  I was curious as to the Mung Beans familial relationship with Frijoles. I knew that Frijoles were a cultivated bean for food source. I wondered where Mung Beans were from,  how they were grown or how they were related to the Frijole. During my research,  I discovered that the Bean family derives from the Latin  Phaseolus which means Wild Bean.  Considering that I was cooking  a dish that was related to the original Wild Bean  on  Earth reminded me  of  our  illnesses and how they are intertwined on a familial basis.

 CFS/ME/GWI/Autism/Lyme/MS and Epilepsy  are  in the same “family” of diseases.  Researchers know this  and  are  now collaborating  to  prove this  through a  plethora of  specialities. We have an illness that is not a singular disease.  We are part of a family of diseases; which  have  been  overlooked  and  suppressed  for  far  too  long.

 Recently,  I took on a  political  project to  further the causes of these illnesses.  In a recent meeting,  a lead researcher asked me “why”?  I did not hesitate with my answer;  I said  “because this illness messed with the wrong mother“.

 I  was seriously  OK  with being a long-term affected patient,  getting excellent care and coping with my illness.  Yet when my son was afflicted,  I took a hard look at what he and millions of others were suffering with and the amount of suffering endured. Because I have spent so many years around politics; for me to walk away from this political issue would amount to negligence and irresponsibility.  It would be tantamount to watching a baby crawl out in front of a moving vehicle and doing nothing.

I started writing this particular blog about 12 days ago.  Blake has now made it through finals.  He does not think he passed one of his classes and has concerns about continuing  at the University Level.  I have spoken little about the toughest moments of our journey, choosing to stay with the positive.  It seems prudent to mention these “down” times now.  We shall see how this chapter ends,  when this blog is complete.

The truth is,  Blake wants to quit at times.  He wants to give up.  He feels hopeless,  worthless and consistently feels “like an outsider”.  Other young adults his age interact and carry on with their lives in a manner in which he is unable to live.  He is unable to exercise, to carry on a normal conversation when he has neurological episodes, to go out and have fun 95% of the time, to be around  crowds  when  he  has  anxiety  and  to  remember  certain  words  when  speaking.

With time, these behaviors and feelings will  lessen as he heals more. The point is to NEVER give UP,  NEVER QUIT  and  TO KEEP TRYING.  The greatest gift I can give as a caretaker is the gift of  innovation and improvisation. To improvise and innovate are great strategies when the going gets tough.

At some point, Blake is going to have to take on his leadership role and care for himself.  He needs to fight to get back into the game called “life”.   He is nearly ready to take this fight on himself.  Because of Valcyte and all of the healing tools we’ve learned,  I would say he is  close to having complete independence.

Going  from  the “A” game to being a disabled patient is humiliating.  It can wear and tear down the best and the brightest. Will Blake pass his courses this past fall term? Will he be able to recover physically and mentally  from this latest “crash”?  Will he gain the 10 lbs back that he recently lost?  These questions as well  as  his  heart  condition weigh heavily on my mind.

 Blake struggled for 3 years to get from the Junior College to the University Level.  When he  feels beaten down,  he wants to “quit”.  The only tool I know of  to  foster forward movement in a patients life, when all else fails; is the tool called “HOPE”.  The hope that someday life will be better, someday our bodies will be stronger, someday there will be more treatment options and cures available.

Like the famous book of  Dichos, “Its’ All In The Frijoles”,  healing with these diseases is like a perfect pot of beans. No matter how you cook your beans or what type of beans you cook, its’ all about the “recipe”.

Personally,  we’ve gone for the Grand Slam approach and are trying for  90-100% improvement.  How long will it take and will Blake exercise at optimum levels again?  These are questions I cannot answer.  He plans on starting to swim in an indoor pool this summer.  This will be his first attempt at regaining any exercise regime, besides walking to classes.

Days have passed.  The grades are now in.  He missed a 3.0 gpa this quarter by 1-2 points. Blake is holding steady at around a 2.75 gpa  as a Physics/Engineering Major plus  Military Science-Linguistics Minor.

If we dwell on what he cannot do at this particular moment, we lose sight of  “what he can do”.   He now attends a University Level science program,  he drives a car,  he walks,  he is upright 85% of the time,  his crashes last 3-7 days instead  of  weeks or months.  Blake can now read and write.  Its’ taken 3 years,  but considering how bad off he was,  this is a miraculous healing tide.

Immunology will be heavily addressed in Phase 2 of Blake’s Treatment.  I believe  it is  “all in the recipe”  and that for patients with these diseases;  the healing recipe is constantly evolving and  changing.  Blake and I dedicate this Blog to  Dr. Jose Montoya.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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

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

BLAKE UPDATE

We will be reporting on Blakes’ recovery progress in December. Good news to follow……..

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.

This is NOT a Bull Fight! OR IS IT? CFS/CFIDS/GWI/PTSD

 In Spain, Bull Fighting traces its’ origin back to 711 A.D.   Nearly one million Spanish Citizens flock to watch bullfighting every year.

Originally accomplished on horseback by the Aristocracy, the sport changed to that of the commoners in 1724. Since commoners could not afford horses, they developed the art of bullfighting on foot, unarmed.

The start of the Fight begins by the sounding of  a Trumpet. Picadores enter the ring and engage in about a 10 minute ritual. During this ritual, spears are thrown into the Bull to weaken him. The trumpet sounds again and in walks the Matador.

There are more “players” in the Bullfighting ring in modern times. There are the Picadores (Lancers) whom are mounted on horseback. The Banderilleros (Flaggers), The Mozo de espada (Sword Servant) and the Matador.

In the final stage of the Fight, the Matador does a spectacular “Dance” with death as the crowd shouts “Jole!”  Then the Matador kills the Bull.

Bullfighting, although part of Spanish tradition and culture, is criticized by many animal rights activist groups. If the tradition of Bullfighting in Spain has raised such awareness for such activist groups as StopOurShame (SOS), I cannot help but wonder why our  Viral Issue and co-related diseases have escaped the art of Activism.

Could it be that we are in a Bull Fight in which The Picadores have thrown their spears into us and we have yet to be slaughtered? Or are we about to begin a new wave of advocacy called Activism?

The “Charging Bull” is a 7100lb bronze sculpture that stands near Wall Street in New York City. An artist named Di Modica spent over $360,000.00 to create, cast and install this sculpture. Following the 1987 stock market Crash, this Bull was to be a symbol of  “strength and power to the American People”. Di Modica created “The Bull” as an act of Guerilla Art. On December 15, 1989 he positioned the massive sculpture beneath a massive Christmas Tree in the Middle of Broad Street in front of the New York Stock Exchange. Di Modica handed out flyers about his art and gave the sculpture to the people of New York as a Christmas Gift.

The Police SEIZED The Bull and placed it in an impound lot. A public outcry ensued which Led the New York City Department of Parks and Recreation to install “The Bull” back onto the streets of New York! The Bull was placed 2 blocks south of the New York Stock Exchange. The people in this instance, went from advocacy to activism to achieve bringing The Bull Back. They did so “with unity of purpose”.

You cannot buy unity. You cannot enforce unity. Unity has to come from a sense of passion for a united purpose. To push or proselytize will not be effective methods for bringing awareness or advocacy. The “hard sell” in not necessary to achieve a groups end goals.

If we look towards activism, it might be prudent to look at other models of success. Some of these models can be seen in Coups, Revolutions, Battles and other Activist Groups. We are in the age of heightened social media tools which are at our disposal. However, it would be (and has been) a vast mistake to think that any advocacy could be a success without “on the street” campaigning.

The recent Coup in Egypt was successful in part to the efforts of the AGYM.  AGYM has been cited in The New Yorker as well as Wired  as being so successful in their movements, due to their use of Social Media Tools.  AGYM has fervently made it clear that “using social media tools like Facebook, Twitter, You Tube, etc. were extensions and traditional forms of interactions, NOT replacements”. Their point being that the BULK of their activism work is done “on the streets” by traditional means. (Flyers, Posters, WORD OF MOUTH,  Organizing Protests, Campaigning at Universities and Engaging with Neighborhood leaders.)

 Modern Activism takes Street Action, Social Media Tools and Political Lobbying to achieve a social and political movement. Be it The Arts, The Sciences or with a Health Issue; you must use Political Lobbying in a democracy to further your cause.

Many Governments have laws they will choose to enact to strengthen their security apparatus; should they need to. This is why it is important to strategize for a Peaceful Social-Political Movement.

Strategic Planning and turning our weaknesses into strengths only enhance our chance of voicing and winning the Fight For Our Cause. The extension to this arm is the realization that we need to do this in mass numbers. Infected Military and Civilians have both been left to suffer. Suicide rates amongst Soldiers now out number deaths in Combat. (For the past 2 years.)

 HHV-6A   is a  stealth brain virus that can be capable of inducing mania in a sane human being; under certain reactivation circumstances. This may be the most hideous and scary aspect of our illness. The fact that it could be Anywhere, Anytime, Anyone who could be hit with these viruses is frightening. The fact that a Normal, Healthy, Intellectual, Athletic, Strong and Stable human can revert to suicidal tendencies after being afflicted  is horrifying. This is across the board demographics in that it targets Pediatrics, Males, Females, Youth, Middle Age, Geriatric, Civilians and Soldiers.

Patients are being diagnosed with psychiatric or psychological disorders when in fact there may be an underlying biological Issue. It is cheaper and easier to diagnose an epidemic as “psychosomatic”. (CDC’s ruling on The Lake Tahoe Epidemic.)

 Some of the pathogens that piggyback with HHV-6A are defined as “Stealth”  due to their opportunistic behaviors.  Many people across the Globe are stumped by these diseases and the fact that CFS/Lyme/GWI/Autism are spreading at an alarming rate.  Belgium, The UK, China, Japan, The Netherlands, Europe, Australia,  New Zealand and many others are all wondering the same thing. What IS GOING ON?

So far, we know that we are dealing with an infectious disease. If this is 100% the case, then why are people who don’t touch, don’t live together, are neighbors, in the same church or just live in the same community contracting these viruses? This leads me to believe that there could be a “contagious”  period at some point.

In the book  “The Thirteen Bankers: The Wall Street Takeover and The Next Financial Meltdown”,  by Simon Johnson and James Kwak; the authors identify why this current financial crisis on Wall Street has occurred. From Banking and Housing Policies to deregulatory ideology and Wall Street Political Influence, the authors diagram the unfolding.

Political Influence is the “Tipping Point” for all of us with CFS/Lyme/GWI/Autism and every other disease. If the tipping point for us as a collective patient whole is political influence, then it would be safe to say that advocacy, activism and political lobbying might get us the funding we all want and desperately deserve. Funding EQUALS Research which equals  Diagnosis, Treatment and Prevention.

I was told the moment I stepped foot on a Cattle Ranch,  “NEVER turn your back on a BULL”.  To this day, those words ring true in my ears and I follow them implicitly.

WE ARE NOW THE BULL. Yet we have been weak and viewed as such; thus  Backs have been turned on us and we have been left to suffer. We have a choice.  We can stand in the arena with SPEARS in our back ready for slaughter. We can progress towards a United end goal. Frankly, I am not waiting for that “Second Trumpet”  to signal my FATE,  I am heading for the end goal.

GODSPEED.

JULIA  HUGO  RACHEL

VERY LUCKY GIRL ON VALCYTE

GWI/CFS/CFIDS/PTSD. The Heart of Our Fight.

At The Heart Of Our Fight is all of the players whom have been involved in this illness over the past 40+ years. The progress we are about to experience in regards to awareness and political-medical-societal change would not occur without all of the work that the Doctors, Scientists, Researchers, Groups, Patient Advocates, Alliances and Patients have accomplished around the World. It is obvious to me that this team of CFS/Lyme/Autism/GWI is Uniting and going forward.  It seems to me that everyone in this illness wants change and they want it now.

The only way I know how to change from the underdog to the winner; is to use Politics and the voice of the people; The Voters. Another way to inflict change is to go straight to Legislation.

If a governmental agency is not doing its’ job, then it is prudent to go to the Agencies oversight regulating entity. If the Oversight Entity is a Governmental Agency and does not do its’ job, then Congress must intervene. If Congress intervenes and the oversight entity does not adhere to what Congress has mandated, then The President can intervene.

There is an entire realm of Political Action that has never been utilized to date for these diseases. In order to make use of this political power, there must be a strong and unified force supporting this action.

 Our voices have not been heard in part because we have not had the strength of scientific knowledge backing us nor have we had the political strength to back us. Now we have enough  of the scientific and historic and unified strength to back us up; the time is ripe for change via political action.

It is ONLY through the Viral and Pathogen Links and Associations now known to occur in CFS/GWI/Lyme/Autism  and the  association of these Links with other distinguished diseases that we are going to further our political cause for  research, diagnosis,  treatment and prevention.

One of the Historic Health Ballot Measures to pass was the “YES on 71” Proposition; Californians say Yes to Stem Cells. This was an exceptional victory for Stem Cell Funding both on the State and eventually a Federal Level. Fueled by the Love of His Son who has Diabetes; Robert Klein helped to finance and assisted in writing this initiative. At that time; The Stem Cell Transplant was even more of a highly controversial and hotly debated issue than it is now. It took 87+ Million Dollars in Campaign Fundraising to get Prop 71 passed. The result was 3 Billion Dollars in funding over a 10 year period from The State alone. After this victory, the Federal Funding for Stem Cells began to improve.

At the Heart of This Fight for this patient population is the matter of our well being, the well being of our children and the well being of humanity. We are fighting to prevent a worldwide Pandemic. We are fighting for a cause that has refused to be heard. It is up to us to demand that we be heard. It is also up to Civilians and Military Patients afflicted with GWI/CFS/Lyme/Autism  to collaborate to ensure that all patient groups get treated.

Over 100,000 disability claims are reported a month to the VA. If even 25% OF THESE CASES get diagnosed as CFS/GWI/Lyme;  then this is already an epidemic and quite possibly we have let this spread beyond what is currently being predicted.

Blake and I have had vast improvements on anti-viral treatment with Valcyte.   We instinctively realize that we need phase 2 of treatment; possibly phase 3 for Blake. We knew the Valcyte was a necessary stop gap measure for The HHV-6A, to try and lower the EBV and to stop the CMV in me which has caused damage.

Many people think of CMV as affecting the eyesight only. This is a phallacy as CMV can cause High Blood Pressure and affect other organs such as the lungs and liver.

Blake was nearing admittance to the Hospice Program for CFIDS around 26 months ago. He had gone from 6’2″ to 6.0″; his shoe size shrunk from a size 14 to a size 11-12. He went from 180+lbs to his lowest at 135-140 lbs. He went from a 3.75 GPA to a 1.87 GPA and dropped out of College. He was bedridden on/off for nearly 6 years. He completed his High School diploma on a Home Health School Program, then eventually through the Alternative School. He experienced profound and debilitating fatigue with un-refreshed sleep, migraines, sensitivity to light, severe night sweats, ringing in the ears, vertigo, severe Orthostatic Intolerance, muscle weakness, joint aches, severe heat intolerance, panic attacks, anxiety attacks, withdrawn behavior, depression, suicidal tendencies, near complete cognitive decline (he was put at 1% of physical and cognitive abilities.)

Blake had played 5 sports first string and snowboarded black diamond runs. He became intolerant to physical exertion. During sports, he started losing his balance, he became dizzy when trying to catch the ball as a wide receiver under the lights of the field, he started clutching his chest in agony as he ran and eventually he began vomiting blood when he ran. He refused to quit track until he collapsed after a race at the State Finals. He used the hall walls to balance, was unable to stand up when showering and would stay in bed for weeks to months at a time. At the age of 19, he was unable to drive a vehicle safely. I was on suicide watch 24/7 for 2 years with Blake. I am aware of two occasions where I prevented him from committing suicide. I was determined to force him to live, when he wanted to give up. It is hard for Adults to get ill, harder for Soldiers to get ill, yet I think it even hardest on the Pediatric Group.

After 24 months’ on Valcyte, Blake is now Cognitively  60-70% better. Although he gets a 3.0;  he says he fumbles and is still noticeably deficient cognitively with simple mathematical tasks; especially when he is tired. We have found that mental pacing is as important as physical pacing. He will decline immediately if he overexerts; however his recovery time is 2-4 days on the Valcyte as opposed to 3-6 months prior to beginning treatment.

Blake is still unable to exercise or walk too much. He  is up and around every day; excluding crashes. He makes it to his school classes 80-90% of the time. He is more social. He is more coherent. He is able to walk through the airports to catch flights now; whereas we used to use a wheelchair for the distances. An incredible step is that he now lives independently at our Ski Cabin. He no longer needs 24/7 care; although he does need around 80 hours of assistance per month for chores, paperwork, medical travel, etc. He is still not capable of driving long distance nor could he cognitively traverse travel alone.

He does not have the extreme phobia of crowds and central nervous system overload with over stimulating situations (severe anxiety.)  Yet, he remains guarded and cautious to avoid too many of such situations. He practices self care a majority of the time. He fixes at least one of his own meals per day. He has grown 1.5″ since starting Valcyte and is up to holding steady at 160lbs.  His shoe size is now a 13.

 Blake’s EBV titers: (on The Quest Lab Scales) The EBV-VCA is dropping. The EBV Nuclear are still too high to measure progress accurately at this point. His levels began over the highest measurement scale of 5; they have waivered up and down to about 4.71, then back over 5 again. This still may be an improvement because we do not have the technology to read levels greater than 5; so theoretically speaking he could have started out with levels that were 7 or 10 or 30 when he started the Valcyte.

 The HHV-6 is wavering. They went from 3X positivity to 1x positivity, then back to 3x positivity after a relapse and after going off the vitamin regime. These HHV-6 levels seem to reactivate with stress and infections (he has had Pneumonia several times.). DHEA is nearing normal after daily supplements of pharmacy compounded DHEA Sulfate of 35mg per day.

Julia Update

Due to Major surgeries and post surgery infections my EBV and HHV-6 viral titers and updates will not be available to publish for another 3-6 months.  I will say the viral titers for both dropped significantly over the first year. I have now been on Valcyte for 18 months. My CMV was over the highest measuring limit and it is now within normal range. Like Blake’s, My HHV-6A and EBV have fluctuated during stress, injuries and illness that have occurred secondary to my CFIDS.

There is no doubt in my mind that Blake and I have the same illness, but that it acts differently in both of us.  Sometimes I wonder if Testosterone is a player in this maze of debilitation in the Pediatric Group or a Subset.

The stealth  opportunistic Infections that piggy back with theses viruses can cause illness. Micoplasma  can cause liver function abnormalities, nausea, diarrhea, headaches, migraines, fever, rash and prolonged fatigue. This microscopic organism has no cell wall and is the smallest free living bacteria. Like the virus, it depends on its’ host for survival. Due to the small size and lack of cell wall this microorganism can infect a great number of cells in any part of the body and live as a parasite on the surface of the cells. Because there are no cell walls present, immune cells cannot see them; thus infected white blood cells are not killed, but rather disabled. This results in the immune system being under the false impression that there are enough white cells in circulation. This in turn leads to both under and over activity of the immune system, both of which cause problems.

There are many different species of Micoplasma and these have been linked to as a direct cause or significant co factor to many chronic diseases including CFS, Arthritis, Lupus and Candidiasis. Once Micoplasma becomes parasitic in the cell, morphologic and physiologic changes develop and it takes on the appearance of various diseases. It can also invade cells promoting chronic infection which can be difficult to eradicate. Many chronic diseases may prove to be due to infectious bacterium which transform in to the Micoplasma state in order to better adapt to the body. Recently, Micoplasma has been discovered in diseases such as Gulf War Illness, AIDS and certain forms of Cancer. Its’ been associated with Fibromyalgia, Psoriasis, Urinary Tract Infections as well as many other diseases including CFS.

Cytokines are basically immune modulating agents. Biochemists are researching and debating which cytokines and hormones should be labeled which on the molecular level. We know that the IL-6 Cytokine is well defined and known to increase in concentrations up to 1000 fold during an Infection or Trauma.

TNF is a cytokine involved in systemic inflammation.  The primary role of TNF is the regulation of immune cells. TNF is capable of inducing apoptical cell death, inducing inflammation and to inhibit tumorigenesis and Viral Replication. TNF has been connected with numerous diseases; it has a number of actions on various organ systems, generally together with IL-1 and IL-6. Local Increase in TNF causes inflammation. Low Concentrations of TNF can cause Cachexia; a wasting syndrome.

The nuances of these  diseases are complex and they change with each subset within each disease. However,  getting intimate with the viruses and pathogens we have tested positive for and trying to understand the roles of Cytokines, Hormones and TNF all help me to better understand and cope with what has happened to my body as well as my sons.

As CFS/GWI/Lyme/Autism patients, change is one thing we have gotten used to. Change in Lifestyle, Change in Families, Change in Jobs, Change in Beliefs.

The Heart of Why We Fight is to Change Our Conditions. We can do this by learning about our illness, sharing this information with each other and Uniting Politically to support all of those who are trying to treat and cure us.

Blake wrote a poem about change the other day. He wanted to share this with you.

Change:
It falls from great heights
It pools and collects and forms
Then sinks, sinks to its lowest point
But as it sinks, it rushes forward
Eroding away the rocks
Sweeping away the trees
Falling off the edge of perceivable worlds
To fall with great force and still have the motivation to continue
To flow rapidly till the point of expanding
Building deltas that support unity and life
And finally it spills into a vast ocean
That’s movement is constantly determined by the Moon

26 months ago, Blake would not have been capable of producing this poetry nor would he have wanted to share. The fact that he is opening up, improving and showing a desire to write on this blog in the future; gives me great hope for both his and my future prospect in battling this disease.

At the Heart of Our Personal Fight with battling these viruses and pathogens, we decided to go on Valcyte. I know in Blake’s case, that this decision saved his life.

 
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

GWI/CFS/CFIDS/PTSD. Viva La Revolucion.

When one hears the word Revolution many ideas come to mind such as Revolutionary war, Revolution (disambiguation) as well as Revolt.  Revolutions in thoughts and systems have been the ways and means for change throughout the history of humanity.

Revolution can mean many things in many ways to many people. None of these are as harsh in nature as that of Viva La Revolucion: the act of a fundamental change in power or organizational structures that takes place in a short period of time; through armed conflict.

 Since the time of Aristotle to present: political, military, coups and all forms of revolutions have been widely studied by some of the greatest of human minds. Throughout human history, Revolutions have occurred and have varied widely in terms of methods, duration and motivating ideology. Results of these revolutions have included major changes in culture, economy and socio-political institutions.

As  CFS/GWI/Lyme/Autism Patients; we have the choice to create and design a new type of revolution involving peaceful and positive socio-political change. We can do this by using the unified powers of our large patient numbers to influence our established political system. As patients the time is now ripe to strategize, to form political entities and to lobby for our cause. It is time to Organize and it is time to get Political.

A huge challenge for us as patients is to not get stuck in the past with anger and injustices at our situation but rather to look towards the future for innovative ideas that will further our cause for treatment and cures. We cannot afford to spend another 30+ years stuck in the dark ages with these diseases.

 It is time to re-group and focus on the obvious.  We Need Research;  Standardized and Accurate testing methodologies;  Treatment Protocols; Prevention and Awareness. Collectively, our voices need to be unified in numbers to be heard. There are “many causes”  amongst our diseases trying to shout out all at  the same time;  these individual voices make it confusing for both the general public as well as the government to “hear”  as well as to  “understand”  our demands for future progress.

One of the basic techniques of a revolution involving Guerilla Warfare is to “take our weaknesses against the stronger opposing entity and to turn those weaknesses into our strengths.” In War, mercenaries and revolutionary fighters’ who have fewer and less potent weapons who are at a disadvantage against their opponents will strategize on how to overcome the stronger opponent. This strategy is a proven tactical methodology when unity and organization and leadership are all involved.

GWI/CFS/Lyme/Autism patients have the chance, we have the tools and we have the strength in numbers to elevate our position  by strategizing and uniting. The medical, societal, political and governmental agencies which have held enormous power and have stifled our progress for research and treatment are now at risk for the tables to be turned on them.

The Political Aspect of our diseases has to be handled progressively and we need to look forward. No matter how much injustice we have endured as  Patients; it makes more sense politically to go with the positive and progressive approach and to re-invent ourselves into success. The AIDS campaign was brilliant. WE have much to learn from their strategy as well as inventing our own.

Politically speaking, we need grass roots groups as well as ultra savvy politicos to make this happen.  Politics is a science unto its’ own. It is an intricate, intimate science that takes skill, passion, power and tremendous inside experience in order to be successful.

I have had more than a few revolutions in my lifetime thus far that have brought me to this point and time with wanting to fight for our diseases. Experiences where I was so influenced that I experienced a sudden, complete and radical change in my life. Through these experiences, my life views changed dramatically and my life was forever altered in my thoughts, dreams and aspirations. Needless to say my goals changed.

 Some of these experiences are too painful to speak of. Many of the positive life-altering experiences have had to do with education, traveling  and my illness since a young age. Yet, the one revolutionary experience that explicitly engaged me to enter battle with this illness; was watching my son Blake nearly losing his life to CFIDS. My Rules of Engagement changed at that point.

 I cannot help but think of our revolution with our illness and that of the story of Ernesto “Che” Guevara who was born on June 14, 1928. Ernesto Guevara set out on a life altering motorcycle journey through Argentina, Chile, Peru, Ecuador, Columbia, Venezuela, Panama then back through Miami to his home City of Buenos Aires. It was in part his experiences on this motorcycle road trip across Latin America that would impact Ernesto in a way that upon contemplation of his adventures he experienced a sudden and radical change in his ideologies which then altered his path from becoming a full time Doctor to becoming one of the most well known Revolutionary Leaders of our time. He was a Major Figure of The Cuban Revolution; He was an Expert in Guerilla Warfare. Time Magazine places him as one of the 100 Most Important Figures of the 20th Century.

During Ernesto’s Motorcycle Journey across Latin America as documented in: “The Motorcycle Diaries”, he was one semester shy of becoming a Doctor at the Age of 22 when he set out with his great friend Alberto Granada riding double on a Norton 500 Motorcycle called “The Mighty One”. As the two departed Buenos Aires on their 8000+ KM trip, the Norton 500 began its’ journey by spewing smoke and sputtering. As they left Buenos Aires for their arduous trip across Latin America “The Mighty One” provided many comical yet dangerous adventures such as flying into an irrigation ditch with both occupants descending through mid-air, hitting a herd of cows around a bend head on; and suffering a frozen chain over the Andes in Snow and Frozen Terrain demanding that the Bike be physically pushed over the mountain range. It eventually died a slow death and was abandoned along the way. Instead of quitting, the two adventurers continued on their journey by walking, hitch hiking and even using a handmade raft to float down on The Amazon. On their journey, these young men witnessed Poverty, Injustice, Illness, Death and Oppression.

Ernesto began his motorcycle journey as a well-read, compassionate, almost innocent young man who was just forming his ideologies through literature and his exposure to his social class. Through the impact of his travels and the atrocities he witnessed during these; revolution took over his point of view with the emphasis on Viva La Revolucion and then World Revolution via violence and Guerilla Warfare. Ernesto’s fight ended during an attempted revolution in Bolivia that did not go well from the start. By this point, he was not the man who he began as.

With the help of the CIA and our Countries newly highly trained Elite Group of Army Rangers, The Bolivia Army had the assistance they needed to stop the Revolution in Bolivia from occurring. Che was captured and assonated. It was 1969 and he was 39 years old.

What struck me about Ernesto Guevara’s story was his plight with severe Asthma. Ernesto had such severe Asthma that it was a miracle that he was able to travel on a motorcycle in inclement weather throughout Latin America and even a greater miracle that he was able to traverse entire countries on Foot, in difficult terrain, while fighting as a savvy Commander in Guerilla Warfare. He went for long periods without medication, food and supplies. He came close to death on many, many occasions from his Asthma Attacks; both when traveling on motorcycle and then during fighting his battles. His Asthma Attacks were of the severest form.

Before becoming a revolutionary, Ernesto was studying Leprosy as an intern. On his 23rd Birthday nearing the end of the Journey across Latin America, he decided to swim across the Amazon River to reach a Leprosy colony that was quarantined from the Main Island. Ernesto was leaving the area the next day and his last wish before leaving was to spend his Birthday evening with the Leprosy patients whom he had become fond of. As Ernesto swam across the Amazon; which had not been attempted before; there was frantic screaming from the doctors and nuns on the Main Island to “Turn Back, To Stop”. From the Leprosy colony on the other side of the river, the patients screamed to keep going “ERNESTO!” They screamed, urged and begged and told him he could make it. Ernesto had an asthma attack during the swim and it was a miracle that between the currents, the deadly river animals, the water temperature and his lack of oxygen from the attack that he made this journey alive. As he made it close to shore, the Leprosy patients jumped into the water, pulled him out and greeted him with cheers, love, respect and admiration.

There are many theories on why Ernesto “Che” Guevara became a Marxist Revolutionary Leader with such iconic radical ideologies aimed at World Revolution.  I think one factor that may be overlooked  is the fact that Ernesto had a medical condition that created a revolution within him that contributed to his fate and the path he took. His compassion for those that were ill or in trouble that he continually assisted at the expense of his own well being; the fact that he studied medicine to help others; the fact that his Asthma instilled in him such compassion for human life as to swim across the Amazon to give respect to Leprosy Patients at the risk of his own life portrays a humanitarian aspect known intimately to those with chronic and critical diseases.

Having a life threatening illness, being critically or chronically ill instills empathy and compassion in those that experience this which goes beyond measure of word or understanding for those that are healthy. I believe that because of Che’s experience with his asthma illness; he was driven to this level of empathy which changes ones soul. The endurance of such illness can cause passion, yet can also cause mania if not managed with proper care.

 We have passed the crossroads stage and are now entering the time of Revolution with our illness. Although we are entering this new era of unchartered waters for CFS/GWI/Lyme/Autism, it is important for us as patients to understand what we are fighting for and why. In order to WIN a Revolution it is important to know what you are fighting for and it is imperative that you fight out of Love and Passion for the cause for which you have been oppressed. Revolutions are not won by anger, but rather by the intense desire by people to create a better existence and standards which they have unjustly been denied.

                                                                                                                                                                                                                                                                                                                                                     

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

CFS/GWI/CFIDS/PTSD. “OUTLAWS”. Getting Intimate with our Viruses and Pathogens. Part #2.

The Merriam Websters definition of an “OUTLAW” is 1) a person excluded from the benefit or protection of the law 2) a lawless person or a fugitive from the law 3) a person or organization under a ban or restriction 4) one that is unconventional or rebellious and 5) an animal (as a horse) that is wild and unmanageable.

It is the descriptions mentioned in numbers 1, 3 and 4 above that resonate with patients whom have been diagnosed with viruses related to GWI/CFS/PTSD and the Pathogens that piggyback with these Viruses.

We patients have been excluded from the benefit and protection of the Law by being denied the scientific, societal and medical confirmation that our illness even exists on a biological level. The external ramifications of these exclusions include economic, societal and psychological impacts that have created massive loss to our patient population who have been denied employee, disability and other social program benefits. We  Patients have been under a ban and/or restricted individually and as an organization because our illness was of unknown etiology and was categorized by many entities as  “Psychosomatic” instead of Biological.  As a collective whole; I consider every one of us afflicted with these Diseases to be an “OUTLAW” in the sense that we have adapted to become unconventional and rebellious in order to gain medical knowledge with our ultimate end goal to be viable treatment options  for CFS/GWI/PTSD.

In The Porsche Club of America, we commonly call it “an illness” when a member is bitten by the Porsche Bug. It is more than a passion, far from an addiction and for some an obsession is formed.  I learned how to drive these cars on rural back roads and up long treacherous dirt ranch roads until I could get my driver’s license at the age of 16. From then on, it has been one of my greatest passions. I drive them hard and I drive them daily. No weather is too inclement for me to take on in a Porsche. It is no wonder that I love to Rally Race.

I’ve been a Porsche Purist since the bug bit me. I like Vintage Cars, matching number cars with matching numbered engines and I pride myself on the knowledge I’ve gained by watching, listening and paying attention to top Porsche Gurus on the West Coast since the age of 9 years old. I’ve also learned allot about these cars by Trial and Error and through Breakdowns.  “Oh have there been so many breakdowns”. Through these breakdowns, I’ve learned to research, diagnose and fix some of the common and not so common problems that arise in the 912’s and early 911’s.  I like my cars fast and the mechanics in near perfect order, but I shy away from the Concourse or “pretty” category. I’ve always been an outlaw with my cars. Until Recently, I would never have considered altering a Vintage Porsche in body form nor would I consider deviating from their original engine nor technical specifications.

After touring the infamous Emory Family Porsche Facility a few years back during an emergency pit stop for a part; I was initially shocked and aggravated at their projects involving deviation from the Original Vintage Porsche to the creation of an “Outlaw Porsche”.  I was however, immediately struck by the incredible generosity of the Emory family, their incredible craftmanship work, their noticeable affability, genuine authenticity and their awesome Iconic Legacy of Porsche Greatness in this Family. At the time, I just could not wrap my head around what I thought was “destroying a Vintage Porsche to create what I perceived as a Monster.” I felt that Outlaw Porsches were irrelevant and not in alignment with what a “True Porsche” should be.

Recently something snapped in me and I changed my mind. Something pushed me over a mental edge that created a shift in my old thought patterns and paradigms about how my cars “should be”, how my life “should be” and how I “should” live my life.

Partly due to dealing with ramifications of my health over the past 30+ years from this illness and in larger part having witnessed and been caretaker for my son Blake with this  CFIDS  for the past 7 years;  I have found that I’ve become more accepting of change, progression and of  breaking out of “my” box.  This acceptance occurred through the knowledge I’ve earned and gained by way of a tough medical journey that has taught me to embrace my Outlaw Character.

What I once dreamed and imagined; I now realize does not exist as I thought it did. Having a gravely ill son or daughter does something to a mother’s heart, which can never be replenished. I needed to take some time to acknowledge this loss and grieve for the life that Blake and I  have endured and for the amount of time and quality of life we have “missed out on”.

 If we are to survive these diseases, I truly believe every one of us needs to gravitate towards researching, diagnosing and seeking treatment for themselves. Left unchecked, these viruses and pathogens  will not disappear on their own and no amount of band-aid medications will consistently improve the quality of the patients life long-term.

Shooting straight from the hip; our lives are at risk. With my future discussions of gram-negative bacteria, this point will hit the nail on the coffin even harder. We have at most, a decade to figure out these diseases, how to treat them and how to get every infected patient worldwide diagnosed and treated as well as work on prevention. We are in a race for time as the Viruses and the Pathogens which they fuel are going to be dangerously hard to treat. We are in a catch 22 in that we must get funding for Research Studies on a Biological Level in order to further our goal to get patients diagnosed and treated.

HHV-6A is a virus that is hard to detect in the blood. Since the only scientific published paper on the Link between treating high titers to HHV-6A and EBV  used Focus Laboratories as their testing guide for the study; then this is the lab (or their parent company Quest Labs) that can now be accurately relied on to provide the blood test results with proven measurements for diagnosing and treating this Virus.

It is believed that up to 70% of  CFS  patients have 3X or Greater Positivity of the HHV-6A virus and this viral reactivation cycle is not normal within the mass population.

 HHV-6A has also be linked to Gulf War Illness, Lyme Disease, Autism, MS, Lupus and some forms of Cancer. We need more  scientific research studies to be conducted to determine  the percentage of patients as well as to determine subsets affected by  HHV-6A , EBV and CMV in Lyme/Autism/GWI . We need more Research Studies to prove efficacy of antiviral treatments in these various diseases.

According to the HHV-6A Foundation, “HHV-6A is the strain most likely to be found in MS, CFS , AIDS and cancer patients. Most physicians do not realize that HHV-6 can persist in a subacute form causing CNS dysfunction. HHV-6 can also cause selective immune suppression and alterations in cytokines that make it more difficult for the body to fend off cancer, intracellular pathogens, viruses and mycobacteria. Finally, HHV-6  has potent transactivating properties that cause it to stimulate other viruses, such as EBV, CMV and HHV-8. “

HHV-6A  is thought to be Pathogenic and Neurotropic which means it is a virus that is capable of infecting nerve cells, hence the Central Nervous System Symptoms seen in patients. Symptoms range from headaches to extreme cognitive decline, speech impairment, tremors, heat intolerance, night sweats, insomnia and sleep disorders, anxiety, light-food-chemical-drug-mold & toxin sensitivities, depression, fatigue, unrefreshing sleep, muscle weakness, joint aches, Orthostatic Intolerance and unfortunately it seems to be targeting the Cardiovascular System as well. Reports of heart problems in patients with HHV-6A is becoming common.

EBV is a member of the herpesvirus family and one of the most common human viruses. The virus occurs worldwide, and most people become infected with EBV sometime during their lives. Transmission of EBV requires intimate contact with the saliva (found in the mouth) of an infected person. EBV can infect a number of different cell types, including B cells and epithelial cells. Under certain cases it may infect T cells, natural killer cells and smooth muscle cells. Infecting both the B cells and the epithelial cells is part of the viral normal cycle to persist.

As far as treatment goes; there have been no concrete scientific studies proving that anti-viral therapy will permanently reduce Viral Titers of HHV-6A and EBV. However, recently published scientific studies and past scientific knowledge tell us that we have a fighting chance to fight viral reactivation by using strong antivirals for a period of time; followed up by long-term use of milder antivirals.

Valtrex is an anti-viral used to effectively treat Genital Herpes. Valtrex has been used to lower EBV with spotty results showing patient titers dropping anywhere from within 3-15 years of constant treatment. Neither long or short-term efficacy  has  been scientifically proven for Valtrex on EBV and it will not work on the HHV-6A  or CMV Viruses.

Valcyte is a stronger anti-viral and has been proven to lower HHV-6A and seems effective in lowering EBV titers as well. Valcyte is the only known treatment for the CMV virus. Valcyte treatment lasts 12 months or longer depending on the individual.  Acyclovir or Valtrex are antivirals used long-term as follow up treatment after Valcyte.

All of us on Valcyte Treatment  understand that Initial findings show promising results for certain subsets of  patients taking Valcyte. Length of time to stay on the drug and long-term efficacy is Individual.

My son Blake had no choice in treatment options at the time that he started Valcyte. Faced with entering The Hospice Program and the realization that his body was rapidly shutting down;  his decision at 19 years old to begin Valcyte Treatment just shy of his 20th Birthday was his only ray of hope for life.

After 20 months on Valcyte, Blake is no longer in critical condition. His condition remains guarded with prognosis undetermined. His HHV-6A and EBV viral titers are lowering on the Valcyte Treatment.  He has regained the ability to attend college successfully part-time and manages small daily chores. Twenty months ago, Blake was completely bedridden. He has  now gained 20+ lbs. He has another 25 lbs to gain. Cognitively, vast improvements have been made and he no longer experiences the Orthostatic Intolerance 90% of the time and his heart condition is improving. Improvement with all symptoms are greatly noticeable; yet the recovery seems slow going to a young adult who wishes so much to participate in life at the athletic and cognitive level he had once maintained and was highly recognized for.

Many CFS , Gulf War Illness and PTSD patients are still coming out of the dark ages and searching for Doctors who can help them with viable treatment options. Patients are confused by Doctors comments about our diseases and lack of  biological knowledge. Mainstream Doctors are Flying  Blind as to what steps to take, when to take them and how to take them in order to diagnose and treat us. As a result, a majority of the patient population goes to extreme lengths to get medical care plus goes from Doctor to Doctor in an attempt to get answers, a diagnosis and treatment.

 I am appalled that it took over NINETY-NINE doctors visits and over 5+ Years to get Blake diagnosed and treated.  We are not the only ones to go through this, which makes this statement even more appalling. There are MILLIONS of us.

If you are a CFS/GWI/CFIDS/PTSD Patient and have not been tested for HHV-6A, EBV or CMV by Quest or Focus Labs and you wish to be tested for these Viruses; you have the right as a patient to request that your doctor orders these blood tests for you.

I’ve learned allot by being an outlaw with this insididious medical journey. It is with  an Outlaw Spirit that I traverse through this maze of Illness. I learned through trial and error that we did not need to travel across country and go to over 99 Doctors Visits to get Blake diagnosed. I learned that I have the right to ask my MD/GP to run the known blood tests for these viruses and infections if this illness is suspected and all others are ruled out. I’ve learned that our Endocrine System needs to be checked by a licensed Endocrinologist if you have any familial history of  Thyroid Disorders. I’ve learned that the joint and muscle pain that can go  hand in hand with these illnesses  needs to be diagnosed and treated by a licensed Rheumatologist.

 I’ve learned that I don’t need to tell my illness story at length to any new doctor unless they understand and are licensed to treat an infectious disease. I’ve learned that a Doctor who has experience in treating AIDS patients is a likely bet to help out with treating with Antivirals and Long Term Antibiotics for piggyback Pathogen infections such as Chlamydia Pn. and Micoplasma Pn.  in CFS/GWI/Autism/Lyme  patients. I’ve also learned that Roche Pharmaceuticals has a program to help  patients obtain Valcyte who would otherwise not be able to afford the drug.

I’ve learned that the first step in treating our  illness is to get your blood tested. I’ve also learned that these are  infectious diseases;  we must take precautions as to not infect those around us.

 Below is a list of blood tests commonly ordered to assist in diagnosing infected patients.

Viral Reactivation TESTS-

The following Tests are for Quest Laboratories.

HHV-6A, IgG,IgM Ab PNL, IFA

HSV 6 Ab IgG

HSV Ab IgM

EBV Nuclear AG AB

EBV-VCA Antibody IgG

EBV-VCA Antibody IgM

EBV Capsid Ab IgG

Comp Metabolic Panel W/eGFR

CBC w/differential (automated)

Cytomegalovirus antibody (IgG)

Cytomegolavirus IGM

Chlamydophila Pneu Abs

C. Pneumoniae IgG

C. Pneumonia IgA

C. Pneumonia IgM

 DHEA Sulfate

Micoplasma Pneumoniae AB IgG & IgM

Testo, Free and Total LC/MS/MS

Cortisol, Serum LC.MS/MS

C Reactive Protein

The Rest of these tests are FOCUS LABS  (Quest Draws the Blood then sends to their subsidiary Focus Labs.)

Coxiella Burnettii AB

Bartonella IGG AB, IFA

Borrelia Burgdorfgeri IGG AB, WB

LYME Western Blot, Serum

Brucella AB Serologies

Herpes Virus 6 DNA, QUANT, Babesia Serology

Herpsesvirus 6 AB, IGG – HSV ½ IGM & Type-Specific IGG

VZV Total and IGM AB Panel

Other Important Tests Include:

Tocoplasma gondii

HSV 1

HSV 2

Thyroid TSH

Free T4 (If Hypothyroidism is suspected)

 Whether you were born with an Outlaw Spirit or have been forced into such a mode by your illness, this journey can be powerful and inspiring. Often times, it is not the person that creates the challenges: But rather the Challenges That Create The Person. An Intimacy is formed within oneself during this process of overcoming the challenges that has been described as “life altering”.

An incredible example of getting intimate with his challenges against all odds is Erik Weihenmayer. Erik was the first blind person to reach the summit of  Mount Everest, on May 25, 2001. He also completed the Seven Summits in September 2002. Erik Weihenmayer is a supreme example of how a young boy handled going blind in his early teens and overcame any challenge put before him to become an Outlaw Spirit for which no Mountain was too High to Climb. Erik was captain of his High School Wrestling Team . Erik is an explorer, an acrobatic skydiver, long distance biker, marathon runner, skier, mountaineer, ice climber and rock climber.

I’ve heard it said by fellow climbers that only 1 in 6 climbers who attempt to summit Mount Everest succeed and that the remaining 5 will likely die trying. If Erik’s challenges could create climbing the most treacherous mountain in the World Blind; Then what can our challenges as CFS/GWI/Lyme/Autism  patients do for us?

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

 

Examining GWI/CFS/CFIDS/PTSD. Getting Intimate with our Viruses. Part #1

As with any  disease with a potential newfound etiology; there are wide variations of treatment options and choices available to the patient afflicted.  In the beginning stages of a disease, we look to the plethora of Scientific Researchers who study  and explore every possible avenue of the disease at hand in order to find viable treatment options, routes and cures.  It is through studying all branches, avenues and options that these researchers are able to narrow down specific and/or possible etiology as well as possible treatments and cures. I commend every researcher, scientist and doctor who has devoted his or her time and energy in the efforts to discover laboratory methodologies, causations, subsets, treatment options and all else involved with CFS/CFIDS/GWI/PTSD As patients, we owe our lives to these Advocates, Researchers, Scientists, Doctors and Groups devoted to our cause.

In the mean time, these separate branches of research can take decades if not longer to get end results. Identifying Disease etiology is a Giant Step; then exploring and finding out what routes to take for diagnosing and treatment are the branches of the tree that are time consuming and full of endless research. Along with research; comes Trial and Error, Successes and Failure. Then if a new drug needs to be created for treatment, the time frame for treatment or a cure increases exponentially.

Word of mouth about possible treatments options, cures and causations have been our primary “Bamboo Telegraph System” for the past 3 decades. This word of mouth system has kept many of us going through the toughest of times. Up until NOW,  all we have had to go on thus far as patients  is through our community based websites and word of mouth. We have been shunned and ignored by most of the medical, societal and familial realms, thus we turn to these support groups for encouragement and information. The lack of trained CFS/CFIDS/GWI/PTSD specialists in the Biological field to treat the millions of  patients of these combined diseases in the United States as well as the tens of  millions of  patients worldwide  is now at a critical point and time.

We now find ourselves at “The Crossroads”.  Viable Scientific studies on Viruses and Pathogens have been published that now give us more hope, more advantages and more options than at any other time in the past with our Diseases. The time is now ripe to get “Intimate” with our diseases. Now is the time for understanding. Now is the time to gain momentum towards lobbying for our disease. Now is the time to really understand what has happened to our bodies; how this has happened and how we can move forward with treatments available right now.

If we are to fully grasp this disease that has taken a hold of our Brains, Central Nervous System, Heart, Organs, Immune and Endocrine Systems and that has virtually destroyed our quality of life; it is time that we get to know this illness on a deeper level. It is time for us to get Intimate with our Viruses. Some of us do not have the luxury to wait another decade; let alone another year.

What we do know for sure is that  a percentage of cases are caused by A) a genetic predisposition and then B) activation occurs by a virulent trigger, a chemical/toxic trigger or a pathogen. We know that there are AT LEAST 2 subsets of CFS disease; if not more. We know that viral reactivation occurs when :  1) immune dysfnction occurs; 2) cellular dysfunction occurs; then 3) viral reactivation occurs of  HHV-6A, EBV, CMV and other co-infections.  It is imperative that the patient understands what subset of this disease they are in, for without this information they are literally flying blind.  It is only through this course of gaining knowledge and power that we can make informed decisions as to what viable  and sound treatment options we choose to go with.

I originally started writing Very Lucky Girl On Valcyte because I felt I was lucky to have been diagnosed and treated for the underlying causation of my Illness, which is Virus and Pathogens Infections.

 I also started writing this blog, because my son had contracted an illness at 14 years of age and by 19 years of age he was about to be enrolled in the Hospice Program and was given a form to fill out by IHSS for his “Last 5 Wishes in Life”. Watching my son, an extreme athlete, a top student, a top gun, and a passionate-handsome, loving and beautiful soul shutting down cognitively and physically ignited me to explore every option, every avenue and every viable scientific possibility for treatment to save his life. Being on 24/7 suicide watches on his behalf for nearly 2 years only made me more resolute to battle this hideous disease. My son was a passionate, fun loving, humorous soul who turned to suicidal thoughts and tendencies in order to escape the wrath of this disease. They say, “No soldier gets left behind.” My motto was and is, “My son does not die on my Watch.”

After 6 months on Valcyte, I knew my main mission was to write this Blog and to continue to explore every avenue, every nook, every crevice,  every sliver and every ray of hope for treatment and recovery from this disease that wipes out and erases entire lives. My heart acknowledges and grieves for those of you who have lost children to these diseases. I am continually saddened by each death I hear of due to these diseases.  I am committed to doing everything in my power to save lives of these patients. My main focus is Pediatrics and Military Personnel. Yet, hopefully through our work; more patient lives will be bettered as well as saved.  More patients will realize when they have been hit by a Virus and/or Pathogen  AND  to get tested if their symptoms PERSIST.

Howard W. Newton once said, “People don’t give a hoot about who made the original whatzit. They want to know who makes the best one.”  This is truth. Whatever treatment option you choose, whatever protocol works for you; make it the best informed choice for you.

The Branches of scientific research of  GWI/CFS/Lyme/Autism and viral outbreaks have encompassed research such as Natural Killer Cells involvement, Viral Reactivation, Tumor Necrosis Factor-Alpha, The Zero sed Rate Factor, Pathogens such as Micoplasma and Chlamydophila Pn., as well as a host of tick borne and rare pathogens.  Environmental Triggers such as   chemical, mold, toxins, vaccines and food sensitivities are equally as important in this research.

We now have VIABLE  SCIENTIFIC  Data linking and associating genetic predisposition, virulent triggers and viral reactivation to GWI/CFS/Lyme/Autism and Viral Outbreaks.

IF YOU GET HIT WITH A VIRUS or a “FLU” AND DO NOT RECOVER SUBSTANTIALLY within the Doctors prescribed frametime, PLEASE GET TESTED FOR THE VIRUSES AND CO-INFECTIONS LISTED IN PART #2 OF THIS BLOG.

 If you have been diagnosed with PTSD  or a TBI and exhibit 4 out of the 6  symptoms below: PLEASE GET TESTED.

If you have been diagnosed with Gulf War Illness and exhibit 4 out of the 6 symptoms listed below: PLEASE GET TESTED. Test codes are listed in Part #2 of this Blog. HHV-6A at 3x positivity or greater plus opportunistic infections are a sign of immunological breakdown. Central Nerovous System Meltdown happens as well. The HHV-6A  is a virus which takes action and causes failure in our Brains.

If you have an Autistic son or sibling: PLEASE GET THE IMMEDIATE FAMILY TESTED.

If you have Lyme Disease: PLEASE GET TESTED.

Once diagnosed with GWI/CFS/Autism/Lyme, the beginning protocol is to be tested for HHV-6A, EBV and CMV Viruses along with all Pathogens specific to the Disease. The HHV-6 tests should be done through Quest Labs or Focus Labs ONLY so that results can  be compared to recent proven published scientific studies that used Focus Labs in the clinical trials; which proved anti-viral treatment works on 70% of a certain subset patients .

 Patients around the world are at risk for a false-negative if tested at any other laboratory other than Quest/Focus for HHV-6A. Major Universities are using their own labs and telling patients they are “negative”. These same patients are then tested through Quest/Focus Labs and are showing up at 3X-8X positivity for HHV-6A.

 Quest Labs will send the HHV-6 tests to Focus Labs directly. If you test positive for HHV-6, a repeat test will need to be done exactly 4 weeks after your first positive test.  It takes 2 positives  at  a  4  week interval apart to  equal a true positive for treatment protocol  standards.

 Most doctors do not  know about HHV-6A  Virus or that Quest/Focus Labs are the Leader in this testing. Very few Doctors have any understanding of HHV-6; the fact that it can integrate by chromosome into the brain and the potentially disastrous CNS and Immune System Meltdown  this Virus can cause when activated above normal titer ranges. We are now seeing HHV-6A to be associated in neorological diseases such as CFS, MS, GWI, Autism, Lyme, Lupus, some forms of Cancer and many other diseases. We are seeing high suicide numbers in Patients who just cannot cope with the massive wrath of this CNS and Immune System illness combined with the effects on The Brain and the lack of medical attention directed towards diagnosing and treatment.

You are a candidate for Valcyte if you have ALL THREE of the Following:

1)  Your  EBV-Nuclear AG IGG is 3X positive or higher.   (The EBV-VCA IGG needs to be done as well, but treatment depends on the Nuclear test)

2) You test at least 3X positive or higher  for HHV-6;  at Quest/Focus Labs.

3) You have at least 4 of 6 symptoms listed below.

The Symptoms are:

1) impaired cognitive Function

 2) slowed processing speed

 3) sleep disturbance

4) short term memory deficit

 5) fatigue (profound fatigue with unrefreshing sleep)

6) symptoms consistent with depression.

This information is according to the Stanford Protocol: Journal of Clinical Virology 2006; 37:S33-38. Your physician can look this study up. You have the right as a patient to ask your doctor to run these blood tests mentioned above and you have the right to receive a copy of your lab results.

 I have listed a copy of the blood test lab codes in Part #2 of this Blog.  If you test High Positive for the CMV virus, then the only known treatment for this Virus at this time is Valcyte. The CMV can cause retinitis as well as  high Blood Pressure. If you have High Blood Pressure, it is advisable to get checked for the CMV virus  (Harvard Study).

Most physicians are unable to read nor understand HHV-6 results, thus they cannot interpret them and are in the Dark. Here is the positivity scale for  Quest Labs:

POSITIVITY IGG AB Titers for HHV-6

  • 1X…..1:10
  • 2X…..1:20
  • 3X…..1:40
  • 4X…..1:80
  • 5X…..1:16
  • 6X…..1:320
  • 7X…..1:640
  • 8X…..1:1280

Many infectious disease doctors are familiar with Valcyte and its’ usage for CMV.  Sales topped 36 Billion Dollars last year for this Drug and it is a well-tolerated and studied drug whose usage is mandatory in transplant patients (Excluding Liver Transplants). Valcyte is also FDA approved for Pediatric Patients.

In addition to the above-mentioned viruses, it is imperative to be tested for piggyback co-infections (Pathogens) such as Micoplasma and Chlamydophila Pneu Panel. These Pathogen  infections alone and/or in conjunction with Viral Reactivation can make  patients very ill.

 Our patients are notoriously low in DHEA-S. Laboratories list “normal ranges”  for DHEA-S  that are inadequate for those of us with CFS/GWI/Lyme/Autism. Young adults optimal range is between 300-790 depending on sex. Adult women’s optimal range is between 160-340. Although DHEA-S can be purchased OTC, it is best monitored by blood tests and a  compounded  prescription written by a licensed doctor for the correct dosage.

 Additional standard  tests include CBC W/ Differential; Comprehensive Metabolic Panels; Testo Free and Total; Cortisol, Serum L: C/MS/MS and of course Lyme disease. Ana Choice cascading reflex test is advisable. The Tumor Necrosis Factor-Alpha is also a definable test as it shows higher in patients and is strongly correlated with Natural Killer Dysfunction. Some scientists predict the Tumor Necrosis Factor-Alpha Test might be a strong indicator test to prove this illness in the future. Normal Range for this test is 1.2 – 15.3 pg/ml. I am at 222.8, which tells you how my natural killer cells are getting along.

It must be mentioned that a percentage of patients who test high and are in need of treatment will suicide with the HHV-6A Brain virus  if they do not get medical attention.  Our military suicide numbers in the past 2 years now outnumber Death in Combat.  GWI is rampant in the Military amongst both the deployed and non-deployed.

 The HHV-6A virus along with the other viruses and Pathogen infections are like a nuetron bomb to our Brain as well as our Immune Systems. Thus, we call these Stealth Viruses and Pathogens.

Getting Intimate with these Viruses and Pathogens and knowing what to test for is the first step towards gaining more knowledge of  the illnesses they correlate with.

I’ve been warned that  “It is not the Valcyte alone that gets the virus it is working on but a combination of both the medication and the body’s immune response in conjunction.” Diet plays an important role in combatting this monster. Environmental Triggers are essential to look at. Physical and mental stressors are damaging on the cellular level and can be life threatensing; this aspect of these diseases is essential to understand how to cope and to progress successfully.  Immune uptake regulators may be essential for certain subsets.

If we get Intimate with our Viruses and Pathogens and determine what we are dealing with; the chance of our personal treatment success is greatly expanded.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

« Older entries