Author’s Note: Four components went into my recovery: the prescription drugs testosterone and anastrozole along with the supplements cinnamon/chromium and l-lysine. The explanation of their significance and use is beyond the scope of this article. However, their use must be managed through appropriate medical tests and attention to symptoms.
While there is a lot of debate concerning testosterone, particularly in women’s health, testosterone is fundamental to the health of all people. The physician who treated me was Dr. Lewis Spangler in Fort Myers, Florida. (His office may be reached at 239-277-9999.) In the end, the basis for my recovery from ME/CFS was more about understanding what is happening in our bodies than about what we take to bring about the necessary changes.
By John Bochenek
In my life I will forever remember 2013 as a bad year. Just the same, I will remember 2014 as the most incredible and exciting year that I have ever experienced. The dramatic difference is captured in these two photos.
The first was taken when my Florida driver’s license needed to be renewed upon my birthday in January of 2013. It was a dismal moment when I stopped and looked at the photo on my new ID. While I hated the picture, what I hated even more was the state of health that ME/CFS had put me in. The second photo was taken in September of 2014. Needless to say, I was experiencing life in a completely different way by this point in time. Indeed, I felt as if I had won a lottery.
In order to bring hope to those who suffer from ME/CFS, I wish to share my journey of the past year with you. I am optimistic that my experience is not unique and may be enjoyed by others who suffer from ME/CFS.
Trying To Understand the Origin of ME/CFS
For those who have been readers of Pro Health articles for some time, you may have seen an article published in February of this year that was written by me. It detailed a hypothesis concerning the nature of ME/CFS. The hypothesis was that ME/CFS is the result of a faulty feedback loop between immune function, endocrine function and mitochondrial performance. It concluded that endocrine function needs to be balanced with the current level of immune function in order to restore the feedback loop to its proper state. It also concluded that difficulties in treating a long-term patient were due to high pathogen levels which build up over the many years that a patient has suffered from low natural killer cell cytotoxicity. The hypothesis holds that when treatment improves NK cell function, high inflammation may result from the increased cytokine activity of the NK cells that are dealing with those abundant pathogens.
While the concepts of the hypothesis might be debatable, and only time and data will tell whether or not the concept is correct, it was the basis for my recovery. Without employing the principles in the hypothesis, the second picture showing my recovery would never have been possible.
A Painful Year
I was diagnosed with pneumonia in April of 2013 upon an emergency room visit. After recovering from pneumonia, I spent the next three months sitting in my apartment each day. The only time I ventured out was for a medical appointment or to go to the store. I was thankful that I could still do as much. But even a walk through a store would bring on chest pain and shortness of breath. Finally, my feet began to swell and foot tissue began to decay, presumably from poor circulation. I honestly felt that my days were numbered.
Perhaps most painful of all was my withdrawal from the world. Despite my condition, no one understood what I was experiencing. I even stopped communicating with family members.
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At the same time, like many others with ME/CFS, I had spent years looking for answers both by having exhaustive medical tests performed and researching the results of those tests in the National Library of Medicine database known as Pubmed. After doing so for four years, I had a certain level of confidence that the hypothesis had merit. The final test that led me to believe I was on the right track was a muscle biopsy performed by The Mayo Clinic in Jacksonville, Florida.
The results were being analyzed at the same time the driver’s license photo above was taken. While the results were judged inconclusive, the particular result that stood out in my mind was the inability of the labs to read a value for ATP synthase in my mitochondria. This provided support for the faulty feedback hypothesis that I thought might explain ME/CFS.
After discussing the hypothesis with a number of doctors, I began seeking treatment to implement a solution after recovery from the pneumonia episode. In August of 2013, I began treatment under the care of Dr. Lewis Spangler in the form of testosterone and anastrozole. As time passed and symptoms and test results changed, the hypothesis provided a basis for understanding how my body was responding, and for adjusting my treatment.
While I experienced a benefit in the first month of treatment, it was apparent from the start that my symptoms would take some time to correct. I began to experience more energy to do the things I wished and a reduction in pain. It wasn’t long before I tried riding a bike that was assisted by battery power. Use of this bike in the past had led to an uptick in symptoms, including the swollen and painful lymph nodes that produced some of the appearance seen in my driver’s license photo. While this no longer occurred, I still experienced some post exertion symptoms. So after two months of trying, I decided to let my body rest and recover.
As the year drew to a close, I was losing weight (more than 30 pounds by the end of 2013) and my health was noticeably better. Yet there were some troubling signs in the blood tests that were being done periodically; namely a rise in blood glucose and a sharp increase in C Reactive Protein (CRP), which is a measure of inflammation. These numbers did not make sense in a traditional sense. After all, blood sugar should drop for an obese patient who is losing weight, and it should also drop in a patient who has stopped taking prednisone, as I had. So there were still some problems to be addressed.
A New Year and A New Life
With the start of 2014 I was hopeful that my recovery would continue. Yet I was reaching a point where treatment would have to be suspended if my inflammation and glucose levels were not controlled. By mid-March, a supplement was added to my treatment in order to help control the situation. The combination of cinnamon and chromium acts as an immunomodulator that reduces inflammation. By the first week of May, six weeks later, blood work showed that my glucose, CRP and Hemoglobin A1c were all in the normal range. Hemoglobin A1c – which is used to diagnose diabetes – had dropped substantially.
This was also the point at which I was able to cease taking methotrexate, hydroxyzine and topiramate. These three, along with prednisone, were being used to control my situation prior to beginning the new treatment in August 2013. In addition, regular exercise became possible at this point without post exertion problems.
By mid-May I felt I was in full recovery. One more supplement, l-lysine, was added to help control and reduce over-abundant viral pathogens. L-lysine acts as a natural antiviral by replacing arginine in the DNA sequence of herpes viruses (like Epstein-Barr or cytomegalovirus). This replacement makes it difficult or impossible for herpes viruses to replicate. By this point in time I had lost 50 pounds.
Over the summer months, my progress continued and my life became one good day after another. To celebrate, I traveled to Yosemite National Park and enjoyed hiking and sightseeing for a week. Then later, I went home to Ohio to visit family and friends. They were as surprised by the new person they saw as they were generous in their warm wishes for my good fortune.
My exercise level continued to increase throughout the summer. I now bike 300 miles a month and enjoy paddleboarding on off days. I have covered up to 50 miles in a single bike ride, and my weight is down 85 pounds from a year earlier (while my diet is less restrictive). Other activities which were unthinkable before have also made their way back into my life. I am a volunteer at a wildlife animal hospital, I am flying airplanes on a limited basis, and I recently started ballroom dance lessons.
It is difficult to put into words the feelings of gratitude and joy that greet me daily. It has become everything that I had hoped for during my ten years of ME/CFS and even more. I only have one further wish; that each and every person who has endured the curse of ME/CFS will find their way back to the goodness of the life they once knew.
About the Author: John Bochenek is a former airline pilot for United Airlines. His career was ended when he was afflicted with ME/CFS in 2004. After recovering from ME/CFS in 2014, he is now assisting Doctors Lewis Spangler and Marc Schneider in the treatment of patients with ME/CFS. A special thanks goes to Cathy Pisano Photography of Naples, Florida