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

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

~ Laurence Binyon’s WWI Poem

“For the Fallen.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

Very Lucky Girl  on Valcyte

 

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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/GW/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 GWI/CFS/PTSD.

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 about these cars by trial and error and through mechanical 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.

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 that fuel disease 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 patients with Lyme Disease, Autism, MS, Lupus and some forms of Cancer.  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. 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 imperative and 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  and PTSD patients are still in the dark ages and searching for Doctors who can help them with viable treatment options. Patients are confused by Doctors comments about their 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. 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/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 if you present with the symptoms listed in Part 1 if this blog; 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 patients with viral and pathogen infections in CFS. Often times a CFS specialist will do a simple EBV Nuclear test and if that test result comes back High positive; the Doctor may elect to do the following tests below if the patient has presented with the symptoms listed in Part I of this Blog.

The following Tests- Quest Laboratories;

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

HSV 6 Ab IgG

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

C. Pneumoniae IgG

C. Pneumonia IgA

C. Pneumonia IgM

 DHEA Sulfate

Mycoplasma Pneumoniae AB IgG & IgM

Testo, Free and Total LC/MS/MS

Cortisol, Serum LC.MS/MS

C Reactive Protein

Coxiella Burnettii AB

Bartonella IGG AB, IFA

Borrelia Burgdorfgeri IGG AB, WB

LYME Western Blot, Serum

Brucella AB Serologies

VZV Total and IGM AB Panel

Other Important Tests Include:

Tocoplasma gondii

HSV 1

HSV 2

Thyroid TSH

Free T4 (If Hypothyroidism is suspected)

Thyroid Ultrasound

 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.

Motivation can be an obstruction or a hurdle for those patients with diseases; let Erik’s’journey remind us that with every step forward, these diseases can be overcome. Perseverance and the fact that patients need to know they not alone in this journey; millions are walking together.

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 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/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 now been published that give us more information, hope, 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 these diseases that have taken a hold of our Brains, Central Nervous System, Heart, Organs, Immune and Endocrine Systems and that have virtually destroyed our quality of life; it is time that we get to know these illnesses on a deeper level. 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 B) activation can occur by a viral, chemical/toxin/bacterial trigger or C) a TBI.

 

 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 CFS 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 son and my Illness, which is Viral and Bacterial Infections.

 I also started writing this blog, because my son had contracted this 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, 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 watch on his behalf for nearly 2 years only hardened my resolve 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 a Pathogen to get tested if their symptoms PERSIST.

The Branches of scientific research of CFS 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 CFS and GWI and PTSD.

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 that you may be eligible for treatment. Central Nerovous System Meltdown starts to happen when viral titers escalate. HHV-6A  is a virus which effects our Brains and Organs.

Once diagnosed with CFS, 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 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/lab corp 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.

If you test positive for HHV-6A, 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-6A; 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-6A 

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-2006).

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 as well as a prophylaxis  for post transplant patients..  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 such as Mycoplasma pnuemoniae. and Chlamydia pnuemoniae. These infections alone and/or in conjunction with elevated Viral titers 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/PTSD. 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.

It must be mentioned that a percentage of patients who have tested very high for HHV-6A 6 weeks prior, have been recorded in suicides. Our military suicide numbers in the past 2 years now outnumber Death in Combat.  GWI/TBI/ PTSD are  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 helps lower 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 threatening. These disease triggers are essential to understand while learning how to cope and to progress successfully.

If we get Intimate with our Viruses and Pathogens and determine what we are dealing with; the chance of our personal treatment success for other treatments as well can be greatly expanded.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE