Medical Blog. | VLG on Valcyte Blog

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: CFIDS, EBV, CMV, HHV-6A, ME, PTSD, Viral Outbreaks

“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

Fractured But Not Broken. CFIDS/CFS/PTSD

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

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: CFIDS, EBV Virus, HHV-6A Virus, Military, PTSD

“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: CFIDS, CFS, EBV, HHV-6A Virus

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: CFIDS, CMV, EBV, HHv-6, Military, PTSD, TBI's, Viral Reactivation

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

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: CFIDS, CMV, EBV, Gulf War Illness, HHV-6A

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

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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: Bacterial Infections, Chronic Fatigue Syndrome, CMV, EBV, Gulf War Illness, HHv-6, Pediatric Illness, Viral Reactivation

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

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

April 26, 2010 at 3:58 pm (#GWI #PTSD #CFIDS #CFS #ME #TBI #SuicideFacts, CFIDS, CFS, GWI, Health Blog, Medical Blog., Pediatric Illness, PTSD)
Tags: Autism, CFIDS, CFS, GWI, Lyme Disease

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Julia Rachel

VERY Lucky Girl on Valcyte

Living with CFIDS. Wonder Woman.

June 18, 2009 at 10:00 pm (Health Blog, Medical Blog., Pediatric Illness)
Tags: Chronic Fatigue Syndrome, Treatment with Valcyte, Viruses associated with CFS

Wonder Woman

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

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

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

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

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

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

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

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

Julia Hugo Rachel

Very Lucky Girl on Valcyte

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