by WandererfromCalifornia
Introduction
I first came down with ME/CFS while working at Delta Airlines in Atlanta in 2018. I started noticing dizziness, fatigue and sensory overload during symptom onset. Also, around the same time, I got night sweats and lost some weight.
At the time, I didn’t know anything about ME/CFS and was treated for anxiety. A doctor in Atlanta was open to a course of Valtrex which was helpful–at first. I stopped and when I restarted the effects seemed to have worn off. I would spend time in the forest attempting to recover and while it helped immensely at first the benefits began to wane overtime. I am still benefited by immune modulators like LDN, as well as Klonopin, Mold Avoidance, getting sun exposure and pacing. Most days I am around 30 percent on the Bell scale.
I credit the works of Erik Johnson and Lisa Petrison regarding the Locations Effect and seeing Dr. Irma Rey of Nova Southeastern on the effects of environmental toxicants on the immune system. Dr. Bonilla at Stanford made the initial diagnosis and emphasized the importance of pacing.
It can be very difficult living with a chronic condition like ME. I occasionally volunteer on ME/CFS phone support group and find it beneficial to be connected to the community.
Mold Exposure Connection
I hope that there is more research into personalized medicine and an integrative approach as it seems that the condition is not homogeneous.
I also believe more ME/CFS doctors and researchers should look into the environmental part of the illness given what transpired in 1984 with the Tahoe Outbreak that involved buildings that were known to be contaminated with mold. (Other factors such as epigenetics and metabolomics and underlying comorbidities should be also continue to be researched.)
I have tested parts of the Bay Area with Mold Avoidance and feel worse in the region. While I believe that Ron Davis and others are attempting to help others with the metabolic trap theory, it’s my hope that they look more into the works of some of the early pioneers like Lisa Petrison and Erik Johnson with the impact of the locations effect on ME/CFS given that there have been a number of individuals in the community who have had declines in bad locations and improvements in good ones. At the very least, it seems, for some, minimizing environmental toxicant exposure may be needed.
I think that within the ME/CFS community and science in general anecdotal evidence as well as case studies should be paid closer attention to. Listening to patients’ personal observations is something which I believe is important in the field of medical research.
Treatment Costs
Lack of money is a concern as having ME/CFS is costly and I’d like to explore potential ME treatments that may help with broken mitochondria.
I believe that insurance companies should cover the costs of treatments for ozone, and hyperbaric oxygen given that ME/CFS seems to have problems with the mitochondria. Anything that supports the patient’s redox balance is something that counts as treatment to me and something that the patient deserves access to.
Meeting with Ron Davis
Today I had the pleasure of meeting Ron Davis while he was walking his dog. Professor Davis mentioned he is looking into the BH4 pathway being oxidized and is hopeful with his current research good things will come. It was a privilege to met him. I reminded Dr. Davis that today is Severe ME/CFS day and as we parted ways told him thank you for the good work he does as well as his son Whitney.
Build Understanding with Direct Dialogue
Lack of understanding amongst the medical community and family has been a challenge for myself and I hope that there will be more understanding amongst patients, doctors and researchers as well as a platform for patients to have an open forum of direct dialogue with researchers and ME/CFS organizations.
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