Cygnus Swan~ “Looking for Direction as Viral Assault Hits Again” #CFIDS/ME/EBV/TBI/PTSD

June 27, 2023 at 4:28 am (Medical Blog., PTSD, CFIDS, Chronic Illness, TBI, ME)
Tags: , , , , , ,

“Cygnus is a prominent constellation in the northern sky located on the plane of the Milky Way. Its name means ‘the swan’ in Latin and it is known as the Swan Constellation. The Northern Cross is comprised of the most visible segment of Cygnus Swan.

Steeped in Greek mythology, the Cygnus Swan is one of the most easily recognizable and brightest constellations in the night sky as well as an indicator of the seasons. Most prominent in the Northern hemisphere the constellation can be seen from June to December. The super-giant Deneb is the brightest star in the constellation”.

From June 2009 thru July 2014, I took readers on a harrowing journey of Blake’s CFIDS disease and treatment on this blog. Moving forward, I will be sharing my story with these diseases, both past and present.

During my teenage years, I suspected I was different from my peers. I was self-conscious and had a secret burden on my shoulders. I could not participate in life like my friends did, thus I felt different. I longed to have what they had; robust health. At times I did not feel well physically and I did not know how to express that or ask for help. I kept swimming until I could no longer physically work out for long periods and compete on a steady schedule. I showed horses when my health allowed. I did the best I could with not knowing what was happening. I turned to a career where I could mostly use my mind and used my athletic skills intermittently in spurts. I instinctively found a way to survive with a yet to be named disease.

The stigma surrounding ME/CFIDS delivered by the majority of medical personnel in an acerbic tone towards patients is scathing and detrimental to the psyche of patients who have suffered beyond measure. Myths, misconceptions and ignorance within the medical field perpetuate barbarous treatment of patients.

I contracted mononucleosis at the age of 14. My journey began with a chronic Epstein-Barr infection plus a host of viral and opportunistic bacterial infections. The most stealth of my bacterial infections, considered an ignitor that fuels the flames of some serious diseases, is known as mycoplasma infection. Little did I know these combined viral and bacterial infections would continue for life and had the potential to put my life at risk. The Doctor told me I would be at the Nationals swimming competition within 12 weeks of being diagnosed with Mono. He said ; “You recover from Mono by resting, drinking fluids and cutting out exercise during the 8-week recovery period. There are no lasting side effects. It is a benign viral infection”.

We now know the above statement on treatment protocol and prognosis needs updating.

My story is similar to many other patients. I have 5 genetic autoimmune diseases plus CFIDS/ME. I have been lucky I am well managed in all specialties. I have had good years and bad years. Good months and bad months. Good days and horrific days with this disease.

During the COVID pandemic, I missed 2 annual appointments with my infectious disease doctor. During 2020 thru the beginning of 2022, I kept up on lab tests. The results did not raise any red flags.

I started projectile vomiting in the fall of 2021. It was embarrassing, frequent and I had no control over when it would happen. Up until that point in time, I could count on one hand the number of times that I had vomited in my life. I was previously classified as a non-puker.

The vomiting started right after my first COVID vaccination in September 2021. I have no scientific proof the vaccine affected me in a negative way. I only “suspect” it may have contributed, secondary to other factors, to a decline in my health and/or possibly caused side affects such as vomiting.

I am absolutely positive that the extreme stress and circumstantial factors going on in my life were the number one factor leading to my health decline. Extreme stress was in play, my immune system weakened in response to the stress. Then after a rare and severe life trauma, my infectious diseases reactivated, exploding to high titer values. One titer went from 17 to 879 within 8 months which showed the extreme spike. This is what I am currently dealing with. The extreme spikes, increased symptomatology and now a constant plethora of tests to determine if I have other serious diseases known to be linked to the high viral titers and symptomatology I now experience.

Between September 2021 and today, my physical condition has deteriorated. My EBV Nuclear titers and the Mycoplasma pn. IgG spiked beyond the highest numbers I recognize. This has not happened to me before. Considering I am very high on CMV and HHV-6 as well, this is more than just a usual relapse.

I started to become very exhausted and weak. Three months ago I woke up with moderate-severe swelling on the left side of my face, jaw and neck. My lymph nodes were engorged. I could feel a hefty amount of fluid in the affected lymph nodes. I felt like The Incredible Hulk, minus the green skin tone. Today, I have a strep, sinus and thrush infection. My immune system at this point is further weakened. My blood tests show I need treatment for my diseases if I want a shot at quality of life.  

I am light headed, losing weight plus exercise and heat intolerant. I nearly pass out when standing. At times I am too weak to stand upright in one place for more than 2-4 minutes. I am experiencing increasing infections with regularity. I did not realize the re-activation of my disease was in full throttle mode until December 2022. I only just now realize how serious this is for me. I may have been in denial or I may not have recognized new symptomatology. I was distracted with circumstances in my life, instead of keeping an eye on my health. As patients, we need to recognize any red flags and take action ASAP for our well being.

Documenting Blake’s illness on his journey from the caretaker perspective was my way to share the insidious nature of the medical journey we traversed. I hope that by sharing our journey that others might somehow be helped.

Now in the midst of my own medical hell with this disease, I plan to document my journey. I am grateful that I will be able to return to my long-time infectious disease doctor. I will likely start Valcyte treatment once again in July 2023. 

As I stand alone on this dark night, I am unable to find my bearings. I look up and stare at the stars; the constellations mysteriously evade me. I am hopeful I will be able to navigate my way into the future, that my treatment will be effective and I will be able to live a quality of life that is much better than what I am living in the here and now. It has been 2 years of declining health and soon I begin treatment.

I have ended up at the bottom of a deep dark cove with this disease. Getting myself off the bottom and up to the surface will take everything I have.

I now realize I took my previous Valcyte treatment success for granted. We need to keep vigilant, keep an eye on our disease, support each other, network and catch each other before we fall. Too many of us have slid down the mountain face first; face planting into the darkness known as ME/CFIDS.

And so my journey begins. Onwards and upwards. Never Quit.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

Leave a Comment

Fractured But Not Broken. CFIDS/CFS/PTSD

July 22, 2014 at 6:29 am (CFIDS, CFS, Medical, Medical Blog., Pediatric Illness, PTSD)
Tags: , ,

Ruby

There is no crime in having CFS or PTSD. Yet grievous acts of cruelty have been afflicted onto millions of patients that have these diseases. I have spent the past year reflecting on our journey with our illness. Although I have been deeply fractured by this battle of a journey; I am not broken. It is for the patients that have come before us and those that are yet to be diagnosed; that I have decided to devote the next decade of my life to further awareness  for these diseases. We intend to accomplish this through a national political campaign that is designed to shake up the misunderstandings, the misdiagnosis and the misconceptions about these diseases. 

Although I have not been in the op-ed category with my past blogs, I feel a need to express to you my concerns for the path our diseases are on. I see some progress, I see more regression. I see deception and I see those that cater to causes that will never align our diseases nor go forward with positive movement in the future. I see a political system in chaos and I see some groups trying to step into state or national politics without any experience in the field. I  see some absolutely incredible and amazing folks  emerging in CFS and PTSD. These folks are brave, highly intelligent, politically savvy and have excellent credentials. Most of these folks, happen to have served our country as well. I am excited to see what they do on The Hill and for the patients. I am excited to support them in their goals to serve patients.

The  book Viral Assault will reflect on facts of our personal journey through this illness, past historical facts that have never been explored and future studies on a theory tying PTSD-CFIDS with a possible link to the unthinkable. We invite you to join us on this journey through this book.

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

It has taken me a year to circle to this point of beginning to write Viral Assault. The humiliation, shame and cruelty I experienced through our journey was nearly unbearable at times. To begin the book, I needed to come to terms with how badly I had fractured during the process. While facing the pain, I realized that although I was deeply fractured, I was not broken.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

2 Comments

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

August 23, 2013 at 7:50 pm (CFIDS, CFS, Chronic Illness, First Responders, Genetic Illness, Health Blog, Medical, Medical Blog., Pediatric Illness, PTSD)
Tags: , , , ,

  • winslow (3)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

4 Comments

Paddling for Will. A Beautiful Soul. CFIDS.

September 12, 2012 at 11:48 am (#GWI #PTSD #CFIDS #CFS #ME #TBI #SuicideFacts, CFIDS, CFS, GWI, Medical Blog., Pediatric Illness, PTSD)
Tags: , , ,

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

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

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

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

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

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

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

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

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

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

RIP Will.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

3 Comments

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

June 28, 2012 at 7:28 am (CFIDS, CFS, First Responders, Genetic Illness, GWI, Medical, Medical Blog., Military Service, Pediatric Illness, PTSD, TBI)
Tags: , , , , , , ,

If I only knew 10 years ago what I know today, so many  lives would be changed and more might be saved.  

The shock and awe of watching somebody you love get eaten up by a  mystery illness is overwhelming and  frightening.

We train so hard to be the toughest, to know how and why to be the best. When something unknown explodes in life and there are no tools to put the pieces back together, what do you do? How can one do their best with zero?

During the past decade, we learned how to create our own tools and survive. At this point in Blake’s recovery, we could easily lace up our boots, stand  straight and never look back at this issue.  Except for one thing: the man down was my son and the millions more falling are children and soldiers/warriors. We don’t leave anyone behind, that is unacceptable to us. We walk towards the fight, not away. We have learned  a few tools and we can  now hunt for more solutions. Walking away is just not an option for us. Our goal is to help others by sharing our journey.

HHV-6 is a virus that attacks the brain. Although most people carry this virus in their body in a latent status, what they do not know, is that it is like a grenade waiting to go  Rambo at a given chance. This virus “reactivates” which means that when a human is hit with a bacteria, gets a severe flu, catches a pathogen in some 3rd world country or undergoes a physical injury or a TBI trauma the grenade  pin  might get  pulled. The human body is then  weakened just enough whereas  this virus  starts  replicating. HHV-6 virus has been linked with Multiple Sclerosis, ALS, Chronic Fatigue Syndrome and some Cancers.

We have scientific proof linking HHV-6A to these diseases. This does not mean this virus is the sole cause of the disease; but  what it does mean is that the patient  has a shot at  better management of disease in CFS and PTSD by treating the  HHV-6A virus  if it is is present in high viral loads by  getting  it  lowered to  within  an  acceptable  and  safe  range; so that underlying disease can be better addressed.

HHV-6A virus loves to hang out with the Epstein Barr Virus (EBV) as well as a stealth bacteria called Mycoplasma. They sound benign, but these are stealth pathogens and cause destruction to organs and the immune system. This may not mean much to you, but you might be surprised to learn that these 3 partners are rampant within the military, are possibly contagious  and may be linked with suicide and  PTSD.

 HHV-6 has been proven to be linked with schizophrenia and suicide. Viral antibody titers have been proven to spike  dramatically around 6 weeks prior to suicidal  behavior.

When Blake first got hit with these viruses, his “mood and character changed noticeably”. I mentioned this to doctors and they sent Blake for a psych exam and prescribed him antidepressants. Had we caught this one small  “tell-tale sign” at early onset;  we would not have  needed  to  visit  100  specialists,  spend  a  quarter  million  dollars and  stare  at  the  edge  of  death  for  years.

This virus likes to tango with  testosterone and cortisol.  We are seeing suicides in men from the ages of teens through late 40’s. This could be due to the fact that men have testosterone and cortisol changes/activity  occurring  around  those  ages.

If the virus is in reactivation mode, many antidepressants will work against the patient instead of for him/her.  This is because the patient is not clinically depressed, but rather  is suffering from a brain disease. Psychologists and antidepressants are useful; but only in tandem with addressing and understanding the underlying brain injury factor. The brains of those with TBI’s and  brain virus need to be monitored by neuropsychologists  who  are  skilled  in  brain  trauma  and  healing. Until those specialists have assessed the patients brains, psych medications should not be randomly prescribed.

 The virus attacks the brain in a way that shuts off the inherited survival and will to live trait. It can cause unnatural behaviors in people who would normally never consider suicidal thoughts. The virus seems to hit the body hardest after the initial assault when a  patient  is pushing themselves to their emotional and  physical  limits; not knowing that their body is in trouble.

During combat, extreme athletic training or when recovering from an injury; the body is normally in replenish and heal mode during down or sleep time. However,  if  a  virus is escalating  in the blood  and the person is pushing it to the limits; normal replenishment cycles malfunction. As this cycle continues, the  brain  disease  targets  areas  of  the brain thereby possibly wearing down systems and  fostering suicidal tendencies.

One sunny day as I was heading out to the horse  pasture, I looked  in Blake’s window  and  witnessed him with a loaded shotgun. He was sitting on his bed, he had a  glazed and blank expression on his face. It took me a split second to figure out that I couldn’t run fast enough to get to him through the back doors of our house before he pulled the trigger. In the next hair of a second, I was tearing  at  a screen and hurling myself  through  a  4×6 ft.  window.  At that point in time, nothing mattered to me except for getting that gun out of his hand. I was able to accomplish  that mission without any shots fired. Blake is alive and well today. Yet every time I read a Military report on our suicide numbers my heart  fractures just a little more. Every casualty reported (and we know how many are not reported), news report and every email or call I get about this issue; never gets easier. This is one of the main reasons we are lacing our boots tighter, standing  straight  and  walking  towards  you  for  support.

PTSD awareness is on the tongue of many right now. We know this is stress related, but what we didn’t know is that some, or many of these cases might be related to HHV-6A, infections and/or Traumatic Brain Injuries. When we look at high-resolution MRI’s of these patients with HHV-6A, white spots are seen on the brain.  These spots can be caused by this virus. The spots can go away with anti-viral treatment.

New studies using experimental positron emission tomography (PET) tracer can effectively diagnose concussion-related brain degeneration while a person is still alive, effectively diagnosing CTE in the living patient. This new technology is redefining the way we view TBI’s and the symptoms that have been sometimes been labeled as PTSD is TBI Patients. CTE Treatment is an emerging field, with Mount Sinai leading the way in new discoveries.

The only known medication scientifically proven to effectively treat HHV-6 is an anti-viral named Valcyte. In a 2006 research study, Valcyte was found to be effective in lowering HHV-6 titers in a subgroup of patients having high antibody titers to HHV-6 and EBV. If a PTSD patient also presents with high Viral titers of HHV-6, it is possible to treat the virus, thus unravelling and alleviating symptoms for the patient related to high viral loads.

Why does this matter? Because this information could help save lives. If you notice 3 OR MORE of the symptoms below, please read our prior blog called “Getting Intimate with Your Viruses Part 1 & Part 2”.  The tests and tools listed in that Blog took us 10 years to figure out.

Symptoms to look for include: 1) Change in moods or outlook in  life; Anger, Depression. 2) Fatigue with unrefreshing sleep. 3) Insomnia 4) Memory loss. 5) Cognitive decline. 6) Migraines. 7) Weight loss 8) Flu like symptoms that linger 9) Joint/Muscle pain. 10) Very low blood pressure.

Sometimes all we “see” is the depression or a “character change” at first onset in our loved one. But if you can look beyond that and notice any other symptoms noted above, you then have biological options to research. The sooner you catch any viral or bacterial infections or recognize a TBI;  seek treatment and  the  greater  your  chance for a successful and timely recovery.

We have 10,000 disability claims filed to the VA each month. We have unusually sky-high suicide rates. We are looking at high numbers of deployed coming home within the next 18 months; which some predict up to 50% could be afflicted. All three of these groups need to know that if they present with 3 or more of the symptoms above, they have the right to a blood test for viral and bacterial infections as well as tests for TBI’s. These are high risk groups that need support and treatment immediately and are rampant in our Military.

It is up to us, toolbox in hand, to be walking towards those that need us. Please support those at high risk because very few,  if any,  are getting the support they deserve and need.

JULIA HUGO RACHEL

VERY LUCKY GIRL ON  VALCYTE

(Updated 2018)

 

16 Comments

Shooting Straight On CFS/CFIDS/GWI/PTSD

April 19, 2012 at 8:22 am (#GWI #PTSD #CFIDS #CFS #ME #TBI #SuicideFacts)
Tags: , , , ,

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

2 Comments

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

December 15, 2011 at 1:52 am (#GWI #PTSD #CFIDS #CFS #ME #TBI #SuicideFacts, CFIDS, CFS, GWI, Medical Blog., Pediatric Illness, PTSD)
Tags: , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

4 Comments

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

November 25, 2011 at 9:57 pm (#GWI #PTSD #CFIDS #CFS #ME #TBI #SuicideFacts, CFIDS, CFS, GWI, Medical Blog., Pediatric Illness, PTSD)
Tags: , , , , , , ,

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

1 Comment

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

August 28, 2011 at 6:36 am (CFS)
Tags: , , , , , , , , , ,

“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

 

3 Comments

SEEING RED. VIRAL. GWI/CFIDS/PTSD

May 15, 2011 at 1:34 pm (GWI)
Tags: , , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

JULIA HUGO RACHEL

VERY LUCKY GIRL ON VALCYTE

2 Comments

« Older entries