Hello, It’s been a long time, and I’ve been dealing with some deeply confusing circumstances. I haven’t wanted to add that confusion to the general space here, so I’ve held back from posting until I felt there were things I could say with some degree of certainty that might help others make informed decisions about the treatment in Japan.
My case is unusual in the number of structural problems that have emerged since the injection in June 2021. These have included an 88% occluded iliac vein, a severely dilated presacral venous plexus, a previously asymptomatic case of occult tethered cord that became rapidly progressive post vaccination, arachnoid adhesions in the lumbar spine, degenerative changes in both the L and C spine including disc bulges and neuroforaminal narrowing, an azygos vein narrowing, bilateral sacroiliac joint inflammation, and, most recently, what appeared to be a cervical CSF leak with extradural fluid accumulation that had likely been present since at least 2023.
Because so much of my illness has involved these structural manifestations and the associated pain and dysfunction, I’ve had some difficulty comparing my experience with that of people with a more typical ME/CFS, POTS, and dysautonomia presentation.
One thing that has been incredibly eye-opening was seeing how many other patients I encountered in Japan also had evidence of at least some structural involvement, with the iliac vein occlusion being particularly common. I also suspect we are going to hear much more about venous abnormalities involving the neck and head, as this appears to be an emerging area of study among researchers working with us.
What is clear to me is that I began feeling better almost immediately after June and I arrived in Japan, before I had started any treatment. I don’t know why. But it was apparent both in my walking data and in a general increase in energy and reduction in neuropathy. Even before beginning treatment, I was already walking more than I had been able to in the previous three years.
Once treatment began, however, it became increasingly difficult to separate those initial improvements from the effects of the treatment itself. Over the course of our time in Japan, I gradually went from walking around 5,000 steps a day to consistently reaching around 10,000 steps, often day after day without crashing. I could come home after walking that much and remain on my feet without the severe leg and joint pain that would previously have made that impossible.
One potentially important variable is the environment. I live in a relatively cold part of San Francisco that gets very little direct sunlight, whereas it was around 80°F when we arrived in Japan and became progressively warmer over the course of our stay.
Altogether, I was able to sustain this increased level of walking for roughly three months in Japan. During that period, I underwent four weeks of DFPA and five weeks of SGF, with the treatments spread out somewhat differently from the usual schedule because June has family in Tokyo. Without getting into all the subtleties of what did and didn’t improve, the clearest changes were a significant reduction in my neuropathy, primarily in my legs and lower back and also in much of the severe cramping throughout my upper torso and into my lower back. Those symptoms improved quite quickly, and I was able to build on those gains while I remained in Japan.
Then I returned to San Francisco on August 5th. I was a dealing with a fever and respiratory illness in the context of my deficient immune function. Since returning home, my ability to walk and function has been progressively decreasing, while my neuropathy has been increasing again.
I’m still trying to understand why. At this point, I genuinely don’t know how much of the improvement I experienced should be attributed to the treatment, how much may have been related to the environment in Japan, or what is responsible for the deterioration since returning home. I don’t want to force a conclusion when I don’t yet have one. All I can say with certainty is what I experienced: I improved substantially while in Japan, that improvement began before treatment, continued while I was undergoing treatment, and has not held since returning to San Francisco.
I’ll share more when I have a better understanding of what is happening.
Sending blessings and encouragement to everyone here struggling with this illness and those supporting us ✨☀️✨