Clyde was born in 1913. He was just a small town guy from a textile milling town in the Western Carolinas. He joined the Army National Guard and was essentially called up and Federalized after Pearl Harbor. My God Father was at Pearl Harbor, he was a Naval Doctor aboard a ship. Since he was small in stature, during the aftermath of the bombing- he was sent down into the ships deep hull to retrieve bodies. My God Father did not know Clyde, but it always amazes me to see the 6 degrees of separation in life. As one beloved was being bombed, another beloved was being called to the fight, only in another region- another fight.
It would be six degrees of separation that would eventually lead me into the fray of CFS, GWI, PTSD and Suicide.
Clyde spent most of his training at Fort Jackson in South Carolina. He went into The North Carolina Army National Guard. He said he was being deployed to help entertain the troops. He deployed to France, Germany, The Netherlands and Belgium. We don’t have too many official military records on hand, due to a fire that occurred at a military records storage facility in Missouri. Many valuable military records were lost in that fire.
101 Years after Clyde was born, in early 2014, I was packing up a familial house in North Carolina. We were moving everything to the West Coast. I came across many trunks and many folded flags in that house. The house was rich with Southern and Military history. I took great pride in being entrusted with this job, but soon I would find that it was a bittersweet task.
The basement of the house was dark and dimly lit. Boxes of clothes and belongings were up a steep flight of stairs. Neatly packed into boxes, were Clyde’s personal belongings- his clothes, his hat collection- which I wear proudly and his miscellaneous trinkets he brought home from World War II. One of those trinkets was a lovely jewelry box. I opened it to discover a type written note that said “here is the key to my trunk, HANDLE WITH CARE”.
Since Clyde was not the dramatic type, I took seriously the capital letters used in the note then set out to find “the trunk”. Down into the dark basement I went to find Clyde’s trunk. As I pulled the chain to turn the only light on, I was overwhelmed with how many trunks were stacked. Men who sent their trunks home to their families with detailed instructions. The amount of loss rushed over me as I leaned back on some ancient piece of junk that is my Huffy Bicycle. I startled as it fell over and for a moment- happy memories flowed forward instead of sadness. Those happy/sad memories are intertwined in my life and they flow back and forth like tides. I find it difficult to find my shoreline sometimes, but for the grace of God, have met great men and women who have managed to say or do something- that put my sails right.
The Huffy took me back to her original buy at a local used bike shop near Williams AFB. Air Force pilots trained there as well as pilots from all over the world. The Huffy was used as a “flight line bike”- meaning she was pedaled to and from the tarmac by pilots, who would hop off of her and saunter over to get into their planes. I made sure she had a basket on her, as that came handy for after flight activities. Like drinking and pedaling. Everyone thinks the AF is stuffy compared to the other branches. They are branded as “squeaky clean”. Believe me, they have just as much fun as any other branch, but they do it on the down low. In the larger planes, they also don’t have parachutes. So they know that on any given day it can be your day to die. “I’d rather be lucky than good” is the most common theme.
I had forgotten the Huffy had been shipped back here-to this house. I petted her gently and said, “I’ll never leave you again”. Talking to inanimate objects or gear is something I do. You learn to love your gear and take care of it, it becomes almost like an appendage.
I stepped away from the Huffy and found Clyde’s trunk, it was clearly marked in black bold letters with his name and unit number on it. The key he had left in the jewelry box opened the trunk. I started going through the trunk delicately. I found binoculars, a type writer, a trench coat, a hat, some ribbons, medals and other items. I quickly realized this was not the trunk “of an entertainer for the troops”. I found serious navigational devices, notebooks and other items and intuitively knew I was going to need to tread carefully. I removed all the items, searched them then moved onto the trunk itself. It took me an hour or so and a large lamp for better light, then only by accident, I found a hidden compartment sewn within the liner of the trunk. I pulled out an old musty envelope from its’ secret hiding place thinking I would find more of Clyde’s very very personal love letters to his gal back home. But what I found instead, was horrific.
There were 12-20 black and white photos. On the reverse side of each photo, was neatly typed notes of the date, the location and other details about the photos. In one such note Clyde said, “I am beneath the covers in my tent by which I type these notes. Please take great care to get these into the right hands so these may be officially documented”. Obviously, they were in my hands and I was shocked. Clyde had taken the pictures and developed them behind enemy lines under fear for his safety. The pictures were unlike any others I have ever seen. They had a raw feeling to them, as if Clyde knew exactly what their existence would mean. They are the most horrifying war pictures I’ve ever seen; they are so realistic you feel as if you are there. The pictures were of massacred Jews from around Europe lying in fields, in trenches and in a factory. According to Clyde these were “secret” locales not yet known about.
I went upstairs and I picked up Clyde’s folded American flag and I fell asleep with it in my arms that night. The flag was in her protective plastic case in a box, I couldn’t let her be shipped back in a box; she would stay and travel back with me. I know that what Clyde experienced was similar to what so many have experienced while serving this Country. Its’ a universal feeling of sadness spread out amongst an apparatus from child to mother to wives to fathers and grandparents to children to significant others. It is also an honor above all others. Its’ an apparatus you may not recognize unless you’ve been very close to that fire known as War and all of the tentacles that support it.
Our veterans that serve our great country do not deserve the way they have been treated as far as the medical issues that they have been bluntly hammered with. Furthermore, I don’t think that men and women go off to fight for the civilian population so that they could return home only to see the free they fought for suffering from a similar pattern of illness and distress. This is a lose-lose for everyone. This is America and we need to remember who we are.
I decided to do a project in the hopes that I would bring hope to millions of sufferers of CFS, GWS and PTSD because I have a link across the board with all of these illnesses. I’ve experienced all of these illnesses personally, with family, friends and loved ones. I’ve been treated beyond horribly and I’ve watched others be treated like less than dog feces while trying to seek treatment. And then there’s the fact that these diseases keep changing names every so many years. A new name equals a new stall tactic and perhaps we will all move forward with a new set of studies. In the meantime, people are becoming sicker and dying from CFIDS, CFS, ME, GWI, GWS, PTSD, TBI’s and their related cousin- suicide. Why do we have to go down more decades of suffering and death with more useless wrong way studies? Why can’t we start treating patients like human beings with treatments that are known to be useful right now? I’ve had a severe form of arthritis since my early 30’s. Modern medicine still doesn’t know what the exact “cause” of arthritis is, yet it is treatable!
There is a lot of very good sound data on these diseases that can lead to treatments now. The time for the continuous shuffling of this house of cards named GWI, CFS, PTSD, TBI’s and related Suicide is over. Cards that shuffle and play games, you’ve had your time in the dark ages. Now it’s time that all patients get to stand in the sun. It is time for action, hope, treatment and possible cures. No More shuffling.
My story is just my own. It may not be status quo to other patients of CFS/ME, but its’ my story. It’s a story of truth. It’s a story of saving my sons life, fighting for my own life and of watching my friends die. It is a story of war and terror and all the scars and illnesses that we walk away with.
My son and I are good. I could walk away today and never look back on this issue. But that would be a false statement. I thought I would write a book and do a movie project based on the sole objective of helping other patients lead a more hopeful life, to improve patients’ lives and to bring International awareness to a host of serious biological illnesses that are being tossed into a wastebasket diagnoses within a psychiatric ball of crap.
But that turned out not to be the entire case. I am doing this project for all of the above. However, I am not only haunted by those suffering now. I am doing this project to honor those that have passed away. I am doing this for The Fallen. To those that have fallen, let me give everything I have in your memory to right these wrongs and along the way, may many more be spared.
On Monday June 27th The Preface of Viral Assault The Book will be released. We will be releasing the book chapter by chapter, every 7-10 days. Viral Assault can be read here or on Facebook or on Twitter and on Medium. We have chosen to release this in print and audio. There is no cost to read or listen to this book.
Julia Hugo Rachel
Very Lucky Girl on Valcyte
There is no crime in having CFS, GWI or PTSD. Yet grievous acts of criminal 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 5 years 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. The first step in the process to come will be our book, Viral Assault, to be published in December 2015. The collaboration of this book involves a team that is widely respected, internationally recognized and highly credible. I can promise you one thing. I will not stop, I will not quit and I will not go unheard throughout this campaign. You, the patients, deserve to have the funding for research and treatment centers. You will never get this without a political campaign movement and that is why I have chosen to undertake this project.
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 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. Then, I see “the players”. The players are interesting to me as I think they have held up progress for our diseases for their own self interests. Be it incompetence, inertia or cover your own behinds; these “players” are bottom feeders aligning with folks that really do not have you as a patient in their best interest. I also see some absolutely incredible and amazing folks, whom I call the “Movers and Shakers” emerging in GWI, CFS and possibly 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.
During the writing of Viral Assault, a documentary will be made to reflect the journey of the process. The documentary and book 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-GWI-CFS with a possible link to the unthinkable. We invite you to join us on this journey via you tube.
The book and documentary fuel and justify the platform for a political campaign. Political campaigns are best run by seasoned professionals.
The treacherous political process is no place for amateurs. Therefore, we have elected to have the most experienced, knowledgeable and expert navigators of the political process on our team.
For now, the primary avenue for communication for patients will be this blog. We look forward to providing you with additional media through a variety of avenues.
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 of 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. I continue on a path of healing with Blake and I look forward to giving you an update very soon on Blake’s condition.
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE
Feel Free to Check Out my Complimentary Site: http://juliahugorachelmomentstoremember.wordpress.com/
“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 attends. 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 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 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 year 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
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.
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE
This subset is known as CFIDS.
We know that these CFIDS patients have viral reactivation and are prone to opportunistic infections such as Mycoplasma Pn., Chlamydia pn., Coxsackie, Echovirus plus plethora of other pathogens. We are at the beginning stages of diagnosing and treating these infections within these patients.
The subset of patients who do not test positive for pathogens is known as CFS. CFIDS patients have the luxury of being treated for their viral and pathogen infections, yet CFS patients are left without any available treatment protocol. One protocol that may pan out for CFS patients is Rituximab. Apparently, Rituximab may work in up to 12% of patients who do not test positive for viral reactivation and who do not have active opportunistic infections. This medicine seems to work best on those patients who previously contracted mononucleosis; yet further clinical trials are needed to verify this drug as a viable treatment.
I originally began looking at Rituximab back in 2009 as a treatment for myself. This was a drug that would have been harmful for Blake, as he had pre-existing infections which precluded him from safely taking this drug. Yet, I thought it may be an option for me. I was eventually found ineligible for Rituximab treatment due to pre-existing autoimmune conditions. Although the onset of my CFS began with Mono at age 15, I had since acquired 7 auto immune diseases, viral infections and my body was riddled with opportunistic infections including insidious blood infections.
When I first learned that Blake could die from CFS, I sought out a CFS specialist who had access and extensive experience with the drug Ampligen. From what I had read and “heard through website chats”, Ampligen was the drug that could cure my son. I was extremely determined to get my son on Ampligen, no matter what the cost was to our family. On our first visit to the CFS specialist in San Diego I asked that my son receive Ampligen. The specialist informed me that he would not administer this drug to any of his patients, including Blake. I asked him why and his response was clear. According to this specialist, he had used Ampligen on many patients and all of the patients ended up in worse condition over the long run. He had known these patients for years and he still stays in contact with those that are alive. This was a drug he had thought would be helpful and one in which he had high hopes for. This specialist was devastated when he discovered patients had long-term negative effects to Ampligen. At first, it seemed Ampligen was a miracle cure for CFS patients. At first, patients made remarkable recoveries. Yet Patients began having severe side effects and in his experience, the drug became dangerous as treatments continued.
I trusted this specialist explicitly as he had come highly recommended. I trusted his opinion to go with a different drug for Blake’s’ treatment called Valcyte. In our case, we fit the exact criteria for the Valcyte treatment protocol, so we were in the subset that had a fighting chance for recovery. Valcyte had been FDA approved for transplant patients thus we felt comfortable with the associated risks. Blake was on the verge of shutting down and we were left with few options. One thing I did appreciate about Valcyte, was that it was not a life-long therapy.
One of the conversations that most CFS doctors do not like to have with their patients, is the role of HSV-1 and HSV-2 as definitive catalysts in reactivating pathogens in chronically ill patients suffering from infections. CFS/GWI/Lyme and Autism patients have not been properly informed that if they carry HSV-2 or HSV-1 at high antibody levels, they need treatment for these viruses as well as their standard illness protocols. Shooting straight from the hip, we need to know this information if we are to get well from these diseases.
The time for the “sex talk has arrived”. The infamous “sex” talk that has been given by most parents to their children, needs to be given by doctors to their adult patients. If HSV-2 titers rise above 3 or more in a chronically ill patients, there is a good chance that unless these elevated titers are lowered with antimicrobial treatment, the patient may never recover from CFS/Lyme/Autism/GWI or Epilepsy. What was once thought of as a simple nondestructive STD that warranted treatment when an outbreak occurred; is now recognized by top microbe hunters as a factor that accelerates and will fuel the fire in pathogen reactivation thereby prolonging chronic illness.
This is the “sex” talk that every doctor in America should be having with their patients, yet mainstream medicine has yet to recognize the role the 8 herpes viruses play and have underestimated their potential to cause and/or ignite disastrous chronic illnesses and further a pandemic which has begun.
Many Gulf War Illness, Lyme Patients, Autism and Chronic Fatigue Patients do not understand why this blog has focussed on tying these particular chronic diseases together as a family. Although we share different genetic findings, although our brain dysfunctions are not exactly the same, although our behaviors are similar yet not exact; we share one thing in common. A high percent of us have elevated viral antibodies, known as viral reactivation to HHV-6, EBV and/or CMV. We also share many of the same opportunistic co-infections (see previous blog for full pathogen list). These pathogens may be seen in PTSD as well. We suspect PTSD is a mix of TBI’s, MTBI’s, stress and pathogen infections leading to CNS and immune dysfunctions.
Whether these infections compound our chronic illnesses; are a starting point for our illness, delay progress in healing from our illness or further our illness to fatality; one thing is for certain. All of us must address these pathogens by getting them diagnosed and treated so we may research and explore all of the reasons underlying our illnesses in order to prevent and cure ourselves and our future generations.
If step One is pathogen testing and treatment, then the following steps will open the doors to discovery for answers and cures. In order to take Step One, we must unite as one group to lobby for antimicrobial treatment for this pandemic. Stop The Pathogen Infections in us; Save the World.
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE
Blake was hit with an unusual crash during his second quarter at University. He was able to maintain one class with a 4.0 GPA average, yet took a drop in his other 2 classes. He woke up in the 3rd week of school and could not remember what he was studying. At first, we thought he had a stroke. He was studying math and engineering but had suddenly lost the ability to recall the theorems and calculations; literally overnight. We suspected PANDAS and had the appropriate lab tests done. His handwriting had declined and there were behavior issues that were out of character. If Strep A had been active in Blake’s brain since onset of illness at age 14, he will still need treatment for this infection. This summer, he will be undergoing consultation for this issue as well as beginning treatment for chlamydia pneumonia. He started Trace Mineral and Vitamin IV’s with glutathione 1x weekly. He is also taking Monolaurin and Cortrex for adrenal support. Blake now weighs 188 lbs and is 6/2″. He has gained 56 lbs. He is able to walk and swim, yet he has pressure in his head when he runs. He is able to hike a few miles without fatigue and is active daily. He is currently enrolled at University 3/4 time. With each “setback”, Blake has learned to bounce back by utilizing more resources available through the disabled student program and he is adapting well by learning from past events. Strep A in the brain, also known as P.A.N.D.A.S. is thought to be seen in adolescent children only. However, we believe if the onset of the chronic illness and infection begins at the pediatric stage, this infection may linger in the patient until it is eradicated. More research needs to be done on P.A.N.D.A.S.
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.
Immunology will be heavily addressed in Phase 2 of Blake’s Treatment. I believe it is “all in the recipe” and that for patients with these diseases; the healing recipe is constantly evolving and changing. Blake and I dedicate this Blog to Dr. Jose Montoya.
JULIA HUGO RACHEL
VERY LUCKY GIRL ON VALCYTE