Dancing with the Dragon
I was working for an investment firm as an Eco-Anthropologist which owned up-market Tourism Resorts throughout the Caribbean, Central & South American. My job was to connect these resorts to the various bylaws activated by Governments to Tourism and the Employment of Nationals. Tourism is a major player in the economic market but costly if the environment isn’t treated with respect. Most of these Nationals didn’t quite grasp environmental factors but the Tourists do and their perspective is the key to success.
I lived in the Caribbean from 1990 to 2011. The first time I caught Dengue Fever was in 1996. While it landed me on my back for about 8 days it was considered mild and I was back to work after a few weeks. Dengue is caused by a bite from the Aedes Aegypti mosquito. This mosquito thrives in tropical & subtropical areas. There is no vaccine and the only thing that can reduce the number of people affected is preventative measures. They breed in clean water and increase population during the rainy season is remarkable. Coconut shells with less than an inch of rain water be come larvae pools.
I caught Dengue again in early 2008. This time was quite serious. Severe pain, high fever with Encephalomyelitis landed me in the hospital. Three months later I was back to work. On November 14th my Mother passed and I boarded a flight back to Canada the following day, stayed for a week then returned. We were opening a new Resort with new staff on Nov 30th and I was working 14 hr days. We greeted a plane load of Virgin Holiday UK Guests and at least 30 of them were part of a wedding party. Since my job included Health & Safety management as well as high profile PR, it was important for me to be available as much as possible.
I finally got home shortly after midnight. I woke up 2 hrs later in some kind of seizure and eventually passed out. I woke again a few hours later. The seizure had passed but I was very sick. I called boss to tell him I could not make it to work but I pushed myself the following day and did everything I could possibly do to keep the wedding party on pointe' and to set up health & safety seminars with new staff. Thankfully everything fell into place with the wedding but training staff was postponed.
I went to my doctor on December 3rd who referred me to an ENT specialist because by then my jawline, throat and upper chest was quite swollen and changing colours. The ENT Specialist called my employers to inform them I could not work. He organized everything and sent me to a private hospital Thursday. This was a ‘developing country’ so while the timing would have been quicker in Canada, it was considered fast in the islands. On Dec 5th, the day I had organized a beautiful wedding for 150 guests - a day for them to remember forever - I was wheeled into the operating room for emergency surgery in a private hospital. My employers were informed that if we waited one more day I would not survive and my mortality rate was already at 76%. My family in Canada were not there so employers assumed all costs and contacted my family. I signed for the surgery because my boss asked me too and not because I understood what was going on.
Much to everyone’s surprise I survived, even though it was touch & go. In fact, I could not understand the severity of my health although I do remember a part of me standing in the doorway watching a half dozen highly specialized surgeons trying to revive my body.
I had Necrotizing Fasciitis aka ‘Flesh Eating Disease’ caused by Streptococcal A, and I was experiencing Encephalomyelitis. I also developed Cardiac issues, pneumonia and one of my kidneys was affected. I’ve always had a high pain threshold but the pain involved this time was off the charts. I described it to my medical team as ‘Torture’.
"Had my bed been closer to the outlet I would have
pulled the plug myself."
The only cure was a heavy duty antibiotic blanket and aggressive debridement every 12 hours with insufficient pain management. The next 2 weeks were a drug induced haze of the same thing until it was decided that I could no longer endure bedside debridement and headed for surgery every morning during the week of Christmas. I also needed blood in a country where donating blood wasn’t very popular so I asked both the Canadian & British High Commission for blood donations. My employers also donated. We raised enough for me and enough to support others who needed blood. My health case became scientifically interesting, attracting more attention so I allowed photographs for research studies.
Finally, weighing 25 pounds less, significant red-raw surgical scars along my right jaw, neck, upper chest and right shoulder, I was discharged on Dec 29th. I had not looked in a mirror yet. I knew several nerves were sacrificed and I knew I was sick in some major way but I had no concept of how sick I was. That was perhaps a blessing in disguise.
Unfortunately, it wasn’t over. I started displaying post exertion exhaustion with paralysis following minor activity, cognitive issues such as a lack of Fine Motor Skills, Auditory Processing, Blurred Vision, Conversation Skills - Lost in Translation from words to pics to words (I think in pics), light, noise sensitivity, voice loss if used too much & too much was 10 to 15 minutes. It never improved. I was referred to a Professor of Communicable & Tropical Diseases at the University of West Indies. I participated in all the tests and referrals to other specialists pragmatically because I assumed the issue would be resolved.
Then grief hit. The loss of my Mother caught up with me, the loss of my health because I wasn’t bouncing back, the loss of my job because I loved it and couldn’t work. I convinced one doctor to allow me to set up a satellite office in my home. That was my mistake but I didn’t understand it at the time because my goal was normalcy. I quarreled with my doctors trying to convince them I was feeling better but it began to sink in that maybe my life had changed and there was nothing I could do about it without learning everything I could about it.
After a particularly rough day I tearfully told the Professor that I didn’t think I could meet the demands of my job. He replied that he was waiting for me to tell him and put things in motion for a disability pension citing Myalgic Encephalomyelitis as per Ramsay. We used SPECT Scans and viral analysis which found 2 strains of Dengue Fever (which is caused by an RNA—Enterovirus) as well as Measles and Chicken Pox. Necrotizing Fasciitis along with severe Sepsis only exacerbated the diagnosis. Life would never be the same and I continue to thank everyone of those doctors who gave up their Christmas to keep me alive.
In June of 2011, once I had my diagnosis & my lifetime pension, I organized other aspects of my life and returned to Canada permanently because I needed a closer network with my family. I was broken from the NF health battle, my grief from compounding loss and disappointed in myself for not bouncing back. I was a Type A personality who loved a challenge but nothing prepared me for this mess. I had all my medical records and heeded the warning that some doctors might accept me as a patient because of Necrotizing Fasciitis but not understand the complexity of Myalgic Encephalomyelitis. I made appointments with various GP’s to meet them as my form of a job interview and found him in candidate #3. He’s from South Africa, understood Dengue Fever, Necrotizing Fasciitis, Myalgic Encephalomyelitis and had the professional insight needed to help me through this rouch patch.
This time I did the right thing and listened to everything he suggested with an open mind. He’s not an ME Expert but he is ME Friendly. He also knew that I was focusing more on ME than I was on Post Necrotizing Fasciitis and/or Post Sepsis so he kept a close eye on everything and ran lab tests every few months to make sure my heart and kidney were operating at acceptable levels.
After the ICC –2011 and ICPrimer 2012 were published I asked my Doctor to test me accordingly. I live in Canada where our Universal Health Care is much more extensive than most countries and Dr Caruthers was recognized as the most prominent ME Expert in Canada so his criteria was more than acceptable. We retested everything and my diagnosis was changed from ME Ramsay to ME-ICC. For me, in Canada, this opened the doors to a Brain Injury Clinic and I was able to tap into treatment for damaged brain nerves. My Cpet was nuclear medicine because the Cardiologist agreed that the usual Cpet was too dangerous. Neurologists were interested in meeting me, a good Viral Specialist was found, a Urologist with a sense of humor was enlisted and a Nephrologist was tapped to monitor my kidney. Canadian Red Cross looks after my transportation. And all of them have their own files but reported back to my GP so we had one complete file.
Fast forward to today, I am an Advocate for people suffering from Myalgic Encephalomyelitis because I know what the ICC 2011 and the ICPrimer 2012 can do. It had the power show me I could believe in myself again and that while my route to ME-ICC might have been exotic, my medical care is exactly what each and every one of us should be fighting for. We don’t need mandatory psychiatry or psychology but the option should be available for those who request it during the transition from healthy to chronically ill. With a solid diagnosis, the patient can be sick and rest as much as possible without apology,
We need the best medicine has to offer. A huge percentage of victims have been purposely misdiagnosed and are convinced that it's OK to add ME to CFS or IOM regardless of the fact that all three have different criteria. In the meantime, the ME-ICC patient group have been laughed at, lied to, mistreated, neglected, abused and bullied into believing its all about what the current norms of psycho babble can offer instead of what is the best thing for each individual patient. At no point in my journey have I been told "it's all in my head" unlike the thousands around the world who must prove they are sick. It's inhumane to be treated in this manner.
Thousand have been diagnosed with some hybrid anomaly called ME/CFS because there is a global wide monopoly of funding dictating specific criteria built to make patients think the fundraisers are working for them. They have fashioned a set of cherry picked facts from the Fukuda, CCC 2003 and now the IOM 2015. Our biggest problem is CFS & ME/CFS because it is so vague that it can include millions with vague symptoms of other diseaes and/or those suffering from mental health issues. It's a tool used to build prevalence which is of course a trap but highly profitable to opportunistic personalities. Thousands of diseases and syndromes cause CF but here we are with a psychiatric fatiguing syndrome being sold as ME and patients being told that the radical left Advocates for ME are arguing about a name.
“Simply put: it’s not the name. It’s the criteria! CFS doesn’t meet the ICC Criteria for Myalgic Encephalomyelitis so therefore patients with ME-ICC do not have CFS. They don’t even have ME/CFS/IOM”
We have a Distinct, Organic Neurological Brain Disease caused by an Enterovirus that attacks the Central Nervous System causing wide spread physical dysfunction. We present some of the same symptoms with each other but our symptom & severity envelope is distinctly personalized which explains why we are the same but different.
It’s too late for me to recover but I want those who fall into the same rabbit hole as I did to have a better opportunity for treatment and hopefully someday, researchers will make us their first priority because they care about our health more than their fundraising donations and their egos.
Cervical Necrotizing Fasciitis with Encephalomyelitis
Dengue Fever and Encephalomyelitis