Fractured But Not Broken. CFIDS/CFS/GWI/PTSD

  Ruby

There is no crime in having CFS, GWI or PTSD. Yet grievous acts of criminal cruelty have been afflicted onto millions of patients that have these diseases. I have spent the past year reflecting on our journey with our illness. Although I have been deeply fractured by this battle of a journey; I am not broken. It is for the patients that have come before us and those that are yet to be diagnosed; that I have decided to devote the next 5 years of my life to further awareness  for these diseases. We intend to accomplish this through a national political campaign that is designed to shake up the misunderstandings, the misdiagnosis and the misconceptions about these diseases. The first step in the process to come will be our book, Viral Assault, to be published in December 2015. The collaboration of this book involves a team that is widely respected, internationally recognized and highly credible. I can promise you one thing. I will not stop, I will not quit and I will not go unheard throughout this campaign. You, the patients, deserve to have the funding for research and treatment centers. You will never get this without a political campaign movement and that is why I have chosen to undertake this project.

Although I have not been in the op-ed category with my past blogs, I feel a need to express to you my concerns for the path our diseases are on. I see some progress, I see more regression. I see deception and I see those that cater to causes that will never align our diseases with positive movement in the future. I see a political system in chaos and I see some groups trying to step into state or national politics without any experience in the field. Then, I see “the players”. The players are interesting to me as I think they have held up progress for our diseases for their own self interests. Be it incompetence, inertia or cover your own behinds; these “players” are bottom feeders aligning with folks that really do not have you as a patient in their best interest. I also see some absolutely incredible and amazing folks, whom I call the “Movers and Shakers” emerging in GWI, CFS and possibly PTSD. These folks are brave, highly intelligent, politically savvy and have excellent credentials. Most of these folks, happen to have served our country as well. I am excited to see what they do on The Hill and for the patients. I am excited to support them in their goals to serve patients.

During the writing of Viral Assault, a documentary will be made to reflect the journey of the process. The documentary and book will reflect on facts of our personal journey through this illness, past historical facts that have never been explored and future studies on a theory tying PTSD-GWI-CFS with a possible link to the unthinkable. We invite you to join us on this journey via you tube.

The book and documentary fuel and justify the platform for a political campaign. Political campaigns are best run by seasoned professionals.

The treacherous political process is no place for amateurs. Therefore, we have elected to have the most experienced, knowledgeable and expert navigators of the political process on our team.

For now, the primary avenue for communication for patients will be this blog. We look forward to providing you with additional media through a variety of avenues.

I know that so many patients have been fractured as have I through these diseases. I implore you to stay strong and look to a brighter future of better understanding, treatment and quality of lives.

It has taken me a year to circle to this point of beginning to write Viral Assault. The humiliation, shame and cruelty I experienced through our journey was nearly unbearable at times. To begin the book, I needed to come to terms with how badly I had fractured during the process. While facing the pain, I realized that although I was deeply fractured, I was not broken. I continue on a path of healing with Blake and I look forward to giving you an update very soon on Blake’s condition.

 

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Feel Free to Check Out my Complimentary Site: http://juliahugorachelmomentstoremember.wordpress.com/

 

 

 

 

Watching Over Blake. Eyes on Progress. CFIDS/ GWI/TBI/ PTSD

  • winslow (3)

              “The flight of the owl is slow, silent and solitary”

 If I could give my son anything,  I thought I would give him back the 12 years he lost of his youth. Since I cannot do this, I am determined to give him a future of unlimited possibilities.

When experiencing a chronic illness, it feels as if time stands still. In actuality, time is moving slowly and the flight is silent. Silence envelopes ones life after the combustion of life halts to a stop with a chronic illness.

I have taken the role as an observer in Blake’s’ life. He began independent living in November 2012. Two weeks after the start of his new beginning, Blake was hit by a car in front of the University he attends. The hit was gruesome, yet Blake managed to hobble away with minor injuries.

I watched and slowly waited as he fell into a relapse that amounted to a vast drop in grades, weight and cognitive abilities. I watched as he fought to overcome the slide in order to slowly recover his abilities. It took 8 months to recover fully from the trauma.

Although 8 months seems like a long time, it is a drop in the bucket compared to 12 years of ones life being ripped apart. Especially for a 24-year-old.

This relapse was different on many levels. This relapse was caused by a physical trauma, not a setback from an unknown factor. During this relapse, Blake never missed a day of school as a full-time University student studying Physics/Engineering. Although his weight and grades declined, he used every tool available to him to methodically step back up the ladder to his peak.

Blake has now successfully attended University full-time (without missing one day for illness) for 6 consecutive quarters. He has now achieved perfect attendance for the past 16 months. His classes include upper division mathematics, physics, engineering, chemistry, biology and geology. His GPA before the car trauma was 3.66 per quarter. His GPA today is 3.25 per quarter.

Blake began a mild physical exercise program of walking and lifting weights 14 months ago. He decided to join an Army readiness program and started running 11 months ago. He had to halt running and physical exercise for 2 months while he was hobbling on a sprained ankle after the car trauma. He began running again in February and by June was up to 4 miles, three times per week. He has also participated in vigorous ruck marches and tactical labs in the field under extreme conditions.

Blake was put on Valtrex as a therapy after his Valcyte treatment. Post Valcyte and present Valtex treatment, the opportunistic infections are now gone. The HHV-6 levels are lowered. The EBV are still high. Anti-viral treatment is like good endocrine treatment in that the patient is treated on “how he/she feels” not necessarily on “what the lab values say”.

On a recent check-up with his infectious disease doctor, it was determined that Blake may be eligible for military service in 6 months. Until then, he will be starting an antibiotic for progressive treatment for inflammation in the eyes which is starting to be recognized in patients. The tell sign is red lines in the eyes. I have noticed strata looking lines in Blake’s  eyes and attributed this to the onset of his illness.

Blake was diagnosed with a thyroid disorder in March. He has been on thyroid medication for five months and notices a great improvement. His endocrine values were slightly off. His thyroid ultrasound showed a small goiter and a cyst. His familial history on the Irish side shows he is a 6th generation thyroid patient. Many physicians diagnose thyroid issues on lab values only. It is imperative to find an endocrinologist that diagnoses on;  lab values + ultrasound + familial history + how the patient feels = diagnosis.

At this moment, Blake is at 85% of cognitive and 80% of physical capacity. The goal of his treatment team is to get Blake to 100%. Blake hopes that will happen in the next 6 months. His goal is to join the Military and to serve his Country.

For a long time, I fought and watched over Blake at close range. Now I find myself watching from a greater distance. I wondered if Blake would be able to “catch up” socially and if he could find his way. We had  three prior attempts at independent living. This fourth time has proven to be exciting, yet not without a few hurdles.

Blake has a faith that is strong and complete. He is a strong young man  with  dreams and goals. It is a pleasure to see him play sports with his peers, to participate in ocean and lake activities, to attend social functions and to give to others through community service.

All of this would not be possible without Valcyte treatment. The alternative immune treatments he participated in look to be responsible for stimulating the energy to exercise; but only after primary healing had occurred. The Valtrex (or other long-term anti-viral) is a necessity for treatment to continue fighting the viruses after the heavy hitting Valcyte treatment. Clearing up any opportunistic infections is critical to success. A patient will never attain a moderate level of health if a thyroid illness is present and remains undiagnosed.

We have no idea what the next year will bring. We are certain that whatever this illness throws at us, we are willing to fly slow and defeat it.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Paddling for Will. A Beautiful Soul. CFIDS.

 I have been writing Very Lucky Girl on Valcyte for 3 years and 3 months now. During this time, I have shared our families journey on Valcyte along with some of the lessons we have learned along the way. We have opened our lives to readers in the hopes that some patients will gain more knowledge about their diseases.

Very few  full recovery cases have been documented for CFS/CFIDS. Blake’s’ case is miraculous, yet for 6 years he stood on the edge of a cliff. He stared into the abyss of the unknown. It is for youth that stand on this cliff, that I continue to write and continue to progress towards an agenda seeking political action on behalf of diseases linked with CFIDS/CFS/GWI and PTSD..

I receive many comments on this blog and I respond to each one individually. The comments have been the most rewarding part of writing this blog. I have had the opportunity to speak with parents and youth around the world who are experiencing the same journey as Blake and I have endured. Together, we travel this road. Together, we face our hurdles.

On January 20, 2012 at 8:55 pm I received a comment on the blog from a young man named Will. Will explained that he identified with Blake in many ways. I replied immediately to Will that evening and commended him for seeking medical attention with a well-known doctor. In my heart, I sensed that Will was very much like Blake. They both were runners, they both were good students, they both had lost weight and they both had lost the ability to cognitively understand reading materials. The similarities were haunting and familiar. Will was around 21 years old, Blake was 23 years old.

I did not hear from Will again. Today, he crossed my mind so I went to email him to see how he was doing. The last I heard, he was making a decision on what route to take with his medical treatment. I was curious to see how this was going for him and how he was feeling.

Instead of emailing Will, I decided to Google him. It was a sixth sense judgement call that sprang from pure intuition. As I pushed the “search button” to Google Will the links started to appear. My eyes shut tight, they immediately began to swell as tears flowed down my cheeks and sobs began emulating from my throat. Will passed away on May 17, 2012 after battling this neuro-immune disease for 7 years. He passed away 4 months after writing to me.

I began to read more about Will through the obituary and articles. Will had turned to music as did Blake. I listened to Wills’ awesome tunes.  I re-read his emails and I could feel his resilience and beautiful soul. I watched a Video of the Community Memorial. I watched the faces of Wills family, his friends and his community in the video. This beautiful soul was surrounded by so much love, so much compassion and such positive energy that I felt enlightened to have had a glimpse of Will through simple email messages.

Will wrote to me because he was looking for answers. Now I search for answers from Wills’ life.

I grew up in a beach town, body surfing. Recently, I have gone back to swimming. Every time I paddle out, my heart shall connect with Will. He was an amazing young man and a beautiful soul.

My heart and condolences go out to Wills family and friends and the community who supported this young man.

RIP Will.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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.

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……..

SEEING RED. VIRAL. GWI/CFIDS/PTSD

“SEEING RED”  for Autism/CFS/GWI and Lyme Patients can be construed in many ways. Red is the warmest of all colors, the color most chosen by extroverts and the Top PICK for Males. Red is known to be a passionate color for romance and is widely recognized in many cultures as having connection with enthusiasm and power.

Red is also known as the color of “anger” and is symbolic of temper and blood. It is no wonder that red is the color of Mars – known as “The God of War”.

Patients with Autism/CFS/GWI and Lyme Diseases are “seeing red” out of anger and frustration that the medical, societal, familial and political realms are overlooking and suppressing their needs for diagnosis, treatment and prevention. Doctors that try to help and treat these patients experience similar feelings in that they are pressured, ridiculed and even forced away from assisting patients.

Across the barriers of Autism/CFS/GWI/Lyme there lies a sea of misunderstandings, myths and miscommunications. “Seeing Red” could stand for Seeing Research, Education and Discovery come to fruition for Autism/CFS/GWI and Lyme Disease.

I have never heard of such injustices within a patient population as those that have been inflicted onto these four diseases. Predjudice,  malpractice, oppression, suppression, ignorance, negligence, physical abuse, mental abuse and much more has been laid upon the bodies of all of the patients suffering from these four diseases. Never mind we have a Pandemic on our hands; we now have a human rights issue on our hands as well. Blood has been spilled.

Some of the blood that has been spilled has been tipped by our own cups. Groups vying for their positions, views, opinions and beliefs have at some point and time begun digging into trenches and then launching missiles at each other. This is COMMON in grass roots advocacy and may be a common trait in human behavior. Herein lies the Paradigm, yet herein lies the ignition  for “The Paradigm Shift”.

 At some point and time, entities realize that it is absolutely exhausting and futile to re-invent the wheel and to focus on a single tree. Realization sets in that there are millions of trees in a forest and certain wheels have already been invented.

The one thing I love about flying, is gaining new perspective. I love seeing lands, terrain and oceans from an aerial vantage point that I could never have imagined from below. This is both charming and at the same time idealistic. The United States of America was founded on the belief that if you work hard, innovate and unite; anything is possible. I believe this to be true if one remains open to flexibility, change, sustainability and progress.

At some point in time,  Autism/CFS/GWI and Lyme Diseases have all been individually labeled as “impossible” issues to solve on a political level.  With some of our most momentus milestones, a wrench has appeared to be thrown into our wheel of fortune; thereby shutting down our progress. There is now an established need to have a Guardian at the Helm of our Wheel that Protects, Serves and Delivers the Rights of Justice for these Four Diseases.

HHV-6A virus, CMV virus and EBV virus plus pathogens such as Micoplasma ssp., Chlamydia Pn., Coxsackie A & B, Borrelia burgdorferi, Bartonella, C. trachomatis, C. psittachi, Echovirus A & B, plus a plethora of other pathogens infect these patients. Patients have brain impact. Patients have a genetic predisposition. Patients have central nervous system meltdowns.  There are enough published scientific studies showing evidence based proof that patients of these diseases need; A) Virus and Pathogen Testing; B) Specialized MRI Scans; C) Full Endocrine and Rheumatological work-ups; plus more.

Patients need to know what viruses and pathogens they test positive for; patients have the right to testing in order to prevent further spread of these infections. Education needs to begin at the patient level. We can educate the public all day long but at the end of the day, do you know what you test positive for? Do You have infections that can be transmitted? Who are you infecting?

I encourage every patient with Autism/CFS/GWI/Lyme to get tested for HHV-6A, EBV and CMV viruses through Quest/Focus Laboratories ONLY. I encourage all patients to get tested for every pathogen known to exist between Autism/CFS/GWI/Lyme.

Every Pilot knows, “You have to put on your own Oxygen Mask before you can Save anothers Life”.  The time to get tested is now. The time to put on our Oxygen Masks is RIGHT NOW. We have the responsibility and opportunity as patients to slow down the rate of epidemics and pandemics by acting right now. We have been so busy looking at what we “thought” was the Largest Tree in the Forest; we refused to look at the Ecosystem, let alone her Forests, Mountain Ranges and Oceans.

The Paradigm across these four diseases which is about to shift; is the realization that in each disease, we need to treat BOTH the PATHOGENS and the VIRUS. Otherwise, recurrent reactivation cycles will continue to plague the patient, late state disease will occur, disability will continue and the risk for fatality increases. We also need to explore key medicines pertaining to enhancing the immune system in order to supplement and coincide with treating viral and pathogen infections.

Viral Myocarditis, Encephalitis and Epilepsy have all been scientifically linked with HHV-6A. New studies are showing that HHV-6A reactivation in certain subsets causes mania and suicide. We now have strong evidenced based science pointing to HHV-6A being associated with Cancers. There are 20-30 open scientific links associating Autism/CFS/GWI/Lyme with well known and notorious diseases. We are in the same family with many diseases. We are no longer just a group, we are no longer just a name, we’ve now become a family. Viable  scientific studies now provide compelling links and associations that present  a successfull winning  political argument that we are  One Family and have  One  Cause.  THIS IS ONE FIGHT.

Never in the history of the United States has a Civilian Group Fought for a Health Issue for The United States Military. Because GWI is so closely linked with CFS/Autism and Lyme Diseases, history is about to be made. GWI research holds great and enormous potential for contributing keys to unlock the mystery for Autism/CFS/Lyme; furthermore, all four diseases combined have the collective knowledge, perserverance and resources to aid each other for not only discovery, but for viable treatment and prevention options.

Reflecting upon the past 12 months and all that has transpired amongst these four diseases, when all four groups unite, their stories look the same. All four diseases experienced: 1) a lack of funding; 2) the lack of rights to testing; 3) epidemics skyrocketed; 4) research studies were cut off; 5) political suppression; 6) patients wait years to see a doctor to get diagnosed; 7) patients are discounted, isolated and devastated economically.

Suicide has skyrocketed in GWI and CFS. Autism is still diagnosed under the Psychiatric Diagnosis Criteria instead of the ICD (International Classification of Diseases). Autism and CFS are being treated as a behavioral syndrome instead of a biological disease. CFS is now costing the United States Economy 80 Billion Dollars per year to treat in medical costs alone. Non deployed active military are now contracting GWI and family members are now presenting with illness. Lyme Disease has recently been declared “a public health crisis” due to the epidemic across the entire State of Massachusetts.

Many people are perplexed by “How to shift from Underdog to Winner” in our situation.  To strategize for this involves a unique understanding of Human Vision. The Tapetum Lucidum is present in the eye of many vertibrate animals. This trait reflects visible light back through the retina and contributes to superior night vision in some animals. “Eyeshine” is something most people have witnessed. When the light hits the eyes of the animal at night, the pupil appears to “glow”.

Although Humans lack the Tapetum Lucidum, we hone our night vision skills through nutrition, training and high tech equipment. We have figured out how to achieve night vision with great precision. Figuring out how to shift from underdog to winner involves Vision, Unity and Political Action.

Blake and I have had to look at this  problem of our illness with respect to;  how to solve our dilemma, against all odds. What we have found, is that this is an EVOLVING medical journey, thus we remain flexible.

 Blakes’ HHV-6A Titers have now dropped from 5x positivity to 3x positivity after 26 months on Valcyte. His EBV Titers still remain too High, although they have reduced. He is going off Valcyte next week and he will be starting Valtrex at 1000mg 2x per day. This second anti-viral treatment approach is based soley on Blakes Individual Medical Profile Needs.  He will also be adding in a new medication to boost his immune system. He is up 30lbs, has grown 2″ and his foot size is nearly back up the 1.5″ it shrunk. He has little to no Orthostatic Intolerance anymore. He rarely has chest pains. He is getting a 3.0 gpa attending college while taking 7 units. He is at 65-75% max on his best days. Considering he was at 5% when he started Valcyte, this is  a  miraculous improvement. He is still intolerant to any form of exercise or mental duress. Pathogens have now surfaced in Blake. Coxsackie, Chlamydia pn., Echovirus 7 and VZV Virus. We suspected pathogens to surface once the legs of the viruses were weakened, thus  we calculated for phase 2 and phase 3 of treatment.

Our greatest gift as patients that we can give to ourselves is the “gift of knowledge”.  Knowledge comes from evidenced based facts, yet we base our decisions on both our knowledge and our intuition. If we loose sight of the fact that we can create anything we want, we loose hope. When we loose hope, we remain the underdog.

The one thing I realize about being an underdog, is to always remind myself to utilize skills, tools and ingenuity in order to soar to an aerial view for a fresh look. Its’ that “fresh look” that gives perspective when one deals with a unique and evolving issue. It is certainly NOT easy as a patient to climb up That Hill for that type of an aerial view; yet one must climb in order to “summit”. Political action for these four diseases is going to take a unique and historic type of unity. Although the landscape of that unique unity remains to be seen; the “summit” is in plain sight.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

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

 

Gaining a Perspective on CFS/CFIDS/GWI/PTSD. Exiting The Dark Ages of Our Illness.

GWI/CFS/PTSD  are known as  “Invisible Illnesses”. This means that on average, when out in public, the patient may look well enough so that doctors, family members and even friends do not think or believe that the patient is seriously ill. This is a trick of nature. A camouflage. Although we live with a covert illness, in no way do we as patients  fit into normal society. As a result, some of us learn to hide our illness, which makes for less scrutiny and criticism. This may be an invisible disease to the majority in the Medical, Political and Societal realms; yet it is truly a Visible War for the patients, doctors and caretakers whom are a part of this. Most patients are anything but “well” 50-100% of the time; and most Never get to “feel” better than a 3, on a scale of 1-10. Without Medical Treatment, Patients are left to endure a life of constant suffering.

Following the decline of The Roman Empire, Western Europe experienced a period of cultural and economic decline and disruption known as The Dark Ages. In the 1330’s, an Italian scholar named Francesco Petrarca, known as Petrarch, developed the concept of The Dark Age. The concept was intended as a sweeping criticism of Post-Roman centuries as “Dark” compared to the “Light” of Classical Antiquity. The times lacked of Latin Literature and contemporary written history, there was a general demographic decline plus limited building activity and material cultural achievements in general. The Dark Ages spanned the era between the Fall of Rome and The Renaissance. Petrarch said of the times “Amidst the errors there shone forth, men of genius; no less keen were their eyes, although they were surrounded by darkness and dense gloom.”

The CFS/GWI/PTSD Dark Ages have spanned the past 30+ years. When a disease is first noted, often times the etiology is “unknown” for some time. Thus, the medical and societal communities at large tend to discount some new diseases as “psychosomatic”, due to lack of understanding. It is human nature to “put down or discount” what is unfamiliar or uncommon. Society at large says, “How can one validate what they do not understand, cannot see or can not empathize with?” Societal Norms, Paradigms and our Belief Systems tend to lean towards concrete, substantiated proof based on scientific data. The average person cannot cope with the “concept” of the disease at hand, until the etiology has been determined. If the causation and etiology can not be fully understood; then there needs to be evidence based published scientific studies proving diagnosis and treatment protocols.

Looking to the past, we can find similar medical and societal nightmares that occurred for other patient populations of some well-known diseases. Before etiology was known, AIDS was originally called “Gay Hysteria”, Freud called Multiple Sclerosis “Female Hysteria”, as both were considered mental conditions; and certain types of Leukemia were once thought to be ”hysteria”. CFS has been discounted in cartoon strips as “The Yuppie Flu” and patients have been labeled as malingerers, psychotics and neurotics.

 It may be safe to say that any new disease with unknown etiology that affects the Central Nervous System may be labeled as a psychosomatic syndrome, instead of a disease that is affecting the central nervous system. I hope this barbaric attitude changes, not only for our diseases, but also for future diseases that appear. We are in the Age of The Virus; more serious diseases with unknown etiology are likely to appear. It is criminal behavior to discount patients with a serious, life altering biological disease.

Most of us are familiar with the Incline Village CFS Outbreak (1984-1989) involving 259 known patients. Prior and after that, there have been around 50 outbreaks recorded around the Globe. In addition to these smaller outbreaks, two large Outbreaks have been recorded as well and largely ignored.

The Los Angeles Outbreak (1934) occurred at Los Angeles General Hospital and was the 1st suspected CFS outbreak ever officially recorded. 200 members of the hospital staff contracted the disease and over 50% of them remained unable to work 6 months later.

The Royal Free Outbreak (1955) occurred in The UK and may be the largest scale CFS outbreak ever recorded in The UK. Occurring over a 4-½ month period beginning in the spring of 1955 with a few people. By July of 1955, the outbreak grew to over 300 members of the hospital staff and the hospital eventually was closed down until October of that year.

These recorded outbreaks were “not enough” to substantiate CFS as a biological disease. It would eventually take concrete scientific data to disprove the mental syndrome labeling. Eventually, it was scientifically proven that two factors must be involved for  CFS to occur:  1) a genetic predisposition PLUS  2) a virulent trigger.  These 2 factors alone prove this is a biological disease; not a  mental illness.

We now have scientific data proving that viruses involved and  linked with  CFS/CFIDS and possibly GWI and PTSD can  infect cells of the immune and neurological system and are capable of causing latent infections and reactivating under certain conditions. We have proof of increased allergies to food and medications, inflammation to the central nervous system, inflammation to the brain, immune dysfunction and viral reactivation; all of which are involved in part or together. Other proven factors/symptoms that can be present are Neurally Mediated Hypo tension (NMH) and Orthostatic Intolerance (OI), both of which are considered to be directly caused by viruses. Serious sleep disorders which cause lack of deep sleep that the body depends on to perform cell repair each night alters the body’s restoration process; directly resulting in insomnia, sleep disturbances, fatigue and physical and cognitive decline. Scientific data shows that certain subsets have cardiac involvement that can result in heart damage as well as heart failure under certain circumstances in certain subsets. Graded exercise was once a prescription for patients, but is now thought to be harmful or even fatal for those with certain types of cardiac involvement.

Exiting the Dark Ages of CFS/CFIDS  we have garnered enough information to begin to understand these diseases and to move forward towards targeted Biological Research that will move us towards Diagnosis, Treatment and Prevention.

In CFS  alone,  Approximately 3  in 1000 people are afflicted. 47% of the diagnosed patient populations are disabled. It is 3-4x more likely to afflict women than men (similar to MS and Lupus statistics.) There are at least 1 million cases diagnosed in the U.S. and up to 17 million projected worldwide. It is Theorized that there are approximately 3-4 million  cases undiagnosed in the U.S. alone. Only 1-3% of patients recover fully without medical treatment. To go from CFS to the virally induced subset of CFIDS; it is believed that the patient experiences the original triggering event; then 1) immune activation occurs; 2) cellular dysfunction occurs; 3) viral reactivation occurs.

With the discovery of the viral links and involvement  of  HHV-6A, EBV and CMV plus multiple Pathogens to CFS/CFIDS and perhaps in GWI/PTSD,  we now  have an understanding of  what biological research to focus upon.  For certain subsets affected by these viruses and pathogens, treatment options may be more advanced and available than other subsets. For example, we know that there are at least two subsets. One is viral induced with chronic viral reactivation (approximately 60-75%) and the second subset shows no reactivation of viruses present (approximately 25-30%). Right Now, we know that the viral reactivation subset has the best chance for successful treatment using antivirals.

It is with our hard earned knowledge and scientific studies that have and will be conducted that we are able to move toward the Light and away from the Dark Years of CFS. Although we as patients are in the midst of exiting our Dark Ages with this disease, “no less keen are our eyes, although surrounded by darkness and dense gloom”.

What needs to be done and what will be done are yet to be seen. However, radical changes and the potential for progress are now set in stone for all  patients. It is only a matter of Time, Advocacy and Scientific Studies before we are completely out of our Dark Years and into the Light Years with our diseases.

Julia Rachel

VERY Lucky Girl on Valcyte