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.

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……..

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
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

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

Understanding CFIDS/GWI/PTSD. Miss Understood.

Miss Understood here checking in.

As CFIDS/GWI/PTSD Patients we have been misunderstood greatly by 92% of the populous (my estimation only!).

How can that be? In what way have we conducted ourselves whereas we have gotten to this point, space and time in our lives?

 Did we wear beauty pageant sashes that read “Miss Understood”?  Did we dress up as a pig, lipstick up, string on awesome pearls and don heart shaped glasses?

 CFIDS, GWI and PTSD patients are largely misunderstood because our disease is “of unknown etiology”.  The unknown provokes fear, drama and a feeling of helplessness to both patients as well as patient providers. We are like aliens in a way. However, in Earth language, I am here to tell you that we are friendly aliens. I repeat, friendly! We just want to be diagnosed, informed, guided, understood and healthy.

 I have a dream. By the time I am 50 years old; I want to be cured. I am grateful to the team of doctors who have helped me along my 30+-year journey with this illness; however I am ready for “the cure”. I have another dream. It is more important than my own dream. I dream that my 21-year-old son Blake will live a full, active and healthy life. I dream that he survives this disease.

 I’ve held many “titles” in my life: Miss Diagnosed, Miss Informed, Miss Guided and Miss Understood. As a biology major, these titles do not make sense to me. I prefer the “alien” title the best.

 There is a biblical saying…it goes something like this…”Where there is hatred, let me sow love, where there is darkness, light, where there is sadness, joy. Grant that I may not so much seek to be consoled as to console, not so much to be understood as to understand, not so much to be loved, as to love.”

 Our quest as patients is to understand, not to be understood. This is becoming clearer to me as the days pass. If we cannot be understood by 92% of the population, then we need to learn to understand. Please do not underestimate my capacity to move forward as an advocate with this mindset. I am more committed, more determined and more forceful in understanding this illness than I’ve ever been.

 I used to think I was special, unique and out of the box. I had always been told I was “different”. My thinking, thought and behavior patterns were noted since birth as “having broke the mold”. I have been both rewarded and chastised for my behavior and thought patterns. I now realize that having this illness since the age of 15 has somehow exponentially magnified and altered some of my natural thought and behavioral patterns. Some of these magnifications/alterations have been humiliating, degrading and haunting to deal with. Hence, enters the word understanding.

 If we can understand what this illness is doing to our minds and bodies; then we might just have the strength to understand what others see in and of us. Its’ no wonder this illness was labeled as a psychiatric disease from the beginning. Lets’ understand this together. We are not mentally ill. We are not victims. Yet we are changed.

 We have a serious choice to make with our illness. We can try and make others understand; or we can become as informed, guided and proactive as possible in healing and seeking a cure. Of course, we could walk around in a pig’s head, with pearls and lipstick and heart shaped glasses on instead.

Julia Hugo Rachel

Very Lucky Girl on Valcyte

Coping with CFIDS/GWI/PTSD. Taking Out The Trash.

trash2We all do it at some point-

We “take our trash out”.

Be it in urban or rural areas, the chore is basically the same. We accumulate garbage in our lives, we bag it and we get rid of it. As an environmental studies student, I started looking at trash differently. I started looking at what I could recycle, what I could compost and what really was trash. I started trying to re-use more, I started trying to conserve and I started trying to be a member of a conscious stream of people living on this planet that are trying to do so in a sustainable manner. Coping with CFS/GWI/PTSD disease has much in common with “taking out the trash”.

 I was watching a movie one day during a “resting period” as we patients so call that state of being prone. Like a viper with heat sensors, our disease can strike its’ host down within seconds. Then BAM, you need to rest. The name of the movie was “Peaceful Warrior” and I loved Nick Nolte in the role as a mentor for a young man “coming back/fighting” to regain his athletic status after a major injury. As I was watching this motivational film, Nolte said something like “you have to clear your mind and life of all the trash, before you can become a true warrior”. I immediately stopped the movie and was struck by this line.

 Coping with HHV-6A, EBV, CMV and a plethora of bacterial infections gives new meaning for finding ways to recycle and re-use. One becomes so adept at coping that new skills are dreamed up, thought of and implemented in order to survive this disease. But one tool stands out as being imperative to use in fighting and coping with this illness. One must learn to “take the trash out of their lives”. We cannot afford to carry emotional, physical or mental baggage around with us if we are to cope well and live any sort of quality of life.

We need to get over our anger about being banished, discounted and even dying because of this disease. All of the societal, medical, familial and community “stigma” associated with our disease which we tend to try and deal with in a mature manner, needs to be “trashed” and “let go of”.  We need to  break paradigms and disassociate with the “stigma” of this illness.

 We are not the only group in the history of human beings to be discriminated against. When I look at prejudice against race, ethnicity and culture my stomach coils at what some folks have endured. Some have done so successfully and some not so successfully.

Recently, there was an article in The New Yorker that talked about the death sentence of Cameron Todd Willingham. Mr. Willingham was convicted, tried and put to death for the murder of his children. He was accused of setting a fire in his house. Arson investigators were sent in and testified that there was irrefutable evidence that the fire was “caused by arson and that Mr. Willingham was the culprit.” Eyewitnesses originally stated that Mr. Willingham “tried everything he could to get back into the house which was exploding violently”  and “had to be restrained by authorities on site, from entering the exploding house to try and save his children”. The eyewitnesses ended up recanting their original perceptions, after rumors circulated that the Fire Investigators had determined that this was in fact “arson” and that only Mr. Willingham could have done the arson. This is my recollection of the New Yorker article.

 What was very interesting was that a Hail Mary appeared in the Willingham Case. A PhD Chemistry major from Cambridge University named Dr. Gerald Hurst reviewed the case and scientifically dispelled the original Arson Investigators case and scientifically proved beyond reasonable doubt that the fire may/could not have been caused by arson. The Hail Mary was ignored and Mr. Willingham was executed.

Dr. Gerald Hurst is an acclaimed Fire Investigator and Scientist. The original fire investigators looked at the house fire in the manner in which they were taught to do so. The old ways of understanding and investigating house fires are “outdated”, “unscientific” and mostly are done by what “was taught by the mentor.”  Not only are their understandings outdated, the old ways  “have been scientifically dispelled and have been proven to be false”.

Change is now on the way for how fires are investigated. Change is on the way for how our diseases are investigated and determined. New studies, drugs, testing and knowledge is coming to our rescue. For some, not soon enough.

 What change is in store for us as CFS/GWI/PTSD? What do we do now and whom do we go to for help? Our first guide is to use our “inner strength” and to self-care as much as possible in order to live a quality of life where we can even “handle” the physical chore of taking out the trash. Humiliated, disabled and out of steam, many of us turn towards anger and resentment.

We need to take note of the fact that we are on groundbreaking territory here. We are dealing with a medical community that has not been able to even understand how to prove scientifically what is causing our neurological, cognitive, muscular, joint, insomnia, anxiety and extreme fatigue symptoms.

 Mr. Willingham refused to plea bargain for his life. He refused to say he was guilty in exchange for a life sentence instead of execution. He maintained his innocence until he was executed. Sometimes the only tool we can grasp onto as  patients is that we are innocent.

I am amazed at the amount of integrity, intelligence, athletic abilities and extreme “go getters” that have been afflicted with these diseases. Although we are not treated as “go getters”, you and I know what we are. We ran marathons, did triathlons, were athletic stars, were extreme explorers;  pilots, corporate leaders, parents, students and children.  The faces of these diseases are anything but that of “slackers”.

Transitioning from the “victim” to “victor” mentality takes endurance and humility. I challenge each one of us who are coping with CFIDS/GWI/PTSD to “take out the trash” in our lives and unite to bring funding and awareness needed in advancing towards viable research for answers to treat these diseases.

Julia Hugo Rachel

Very Lucky Girl on Valcyte

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

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

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

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

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

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

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

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

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

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

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

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

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

 I commend all  who are battling these diseases.

 JULIA RACHEL

VERY LUCKY GIRL ON VALCYTE

Living with CFIDS. Wonder Woman.

Wonder Woman

It came naturally to choose Wonder Woman as a theme for the 1st Blog posted on VLG on Valcyte.   Helplessly watching my son Blake being bedridden for 5 years through the prime of his youth, taking 20+ specialists to diagnose him. Then, the realization and confirmation that I myself have been diagnosed with the same insidious disease. It takes a Super Hero to deal with CFIDS and the effects of having HHV-6A, EBV and CMV Viruses. The debilitating chronic fatigue causes decrease in quality of life and disability in many cases. The headaches, weakness and the entire other plethora of symptoms make CFIDS  complicated and hard to diagnose. It is no wonder that it is such a difficult monster to diagnose and treat. Hence, enters Wonder Woman. Be it the mother, grandmother, sister, wife, cousin, girlfriend, fiancé or friend; if you are supporting a loved one with CFIDS, HHV-6A or EBV you are a super hero.

 It takes super hero strength for the patient to go through the trials and tribulations of this nightmare. Being on both sides of the fence (both patient and caregiver), I realize it takes hero strength to support the patient as well as being the patient. Thus, I honor all of you out there who are care taking and/or supporting the patient. When ones’ life changes drastically due to illness, very few “outsiders” can recognize and support the emotional and physical journey the patient goes through while his/her life slips into the hurricane path.

 HHV-6A affects the mind as well as the body. With its’ toehold stemming in the brain, cognitive decline ensues. One becomes unable to focus or concentrate and can be quick to anger. Blake was the most amiable boy and young man, until afflicted with this disease. Dark moods and thoughts and a temper reared its’ head, eventually leading to self-destructive behavior. What is amazing for me to see, is an extremely athletic young man who played 5 sports first string and who LIVED to go to school and learn, then become a distant, reclusive person who could not gather the strength to get out of bed for months at a time. What kind of disease could produce such a broad range of symptoms crossing the barrier from physical to psychological?

 All diseases have their titles and their impacts, thus our modern medical community and society have placed a “rating” on each disease. CFIDS have been given a poor rating up until now. Very little was known about these diseases hence they were discounted greatly. Yet, with the new Viral Infection links (HHV-6A, EBV, CMV) to CFIDS, Dr. Montoya at Stanford University and all other ensuing studies using antivirals to fight these infections are making great strides in the goal of treating CFIDS.

  I could be angry when I think of what some of the doctors/specialists/schools/teachers/”outsiders” said to us about Blake and me. The looks, innuendos and outright language saying “get over it, get out of bed, take an anti-depressant and move on with your life. Get counseling, it’s just that you are stressed, nothing is medically wrong with you.” However, I smile when I recount the journey.

I smile because I knew inside and never stopped fighting for my now 21-year-old son. I smile because I am an athletic female that could out swim (backstroke), out ride (horses), out sail, out fly and out drive (race cars) any of those “people” who advised me “to get over it”.  I smile because I know Blake could out run them (he is fast), out Jump them (center in basketball), out pitch them, out snow board them and they would definitely pick him first for their football team (wide receiver).  I also smile because CFIDS, HHV-6A and EBV are on the forefront of modern medicine.

As patients, we are about to provide extensive case studies to help in the cure of  multiple “fashionable” diseases such as MS, Lyme and Autism. We are on the verge of having groundbreaking insight that viral and bacterial  infections may be a crucial link to the cause of many diseases.

 You see, we truly are super heroes. Whether you are male or female, or whichever super hero you identify with, I commend you for supporting or being the patient who lives with CFS/CFIDS.

Julia Hugo Rachel

Very Lucky Girl on Valcyte