“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
VLG on Valcyte Blog 
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