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