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

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