About Me

My Story!

I think I have always had MCS/MCAS because there were times in my life when I would have a reaction, but I never could identify what they were from.. I know one time it was a bonfire. I went to bed with a spot on my face, and several hours later, I had splotches all over my body. I had headaches for a while in college. The kind where you lie in bed with the lights off and hope you make it to the next day. I ended up in the hospital for vertigo one time, and I believe that was after my apartment managers sprayed my place for bugs. 

Two other times, I ended up in the hospital for PTSD, and along with it, I had severe leg spasms, a fever, and itching. No one was concerned about the itching, but I found that even wearing my clothes was uncomfortable. Both times when I went to the hospital, I lost some of my long-term and short-term memory. I know that is from the PTSD, but I just wonder if some of that was from neuroinflammation. It does eventually come back, but it takes a while. 

I was first diagnosed with chronic fatigue syndrome in 1983 when I was a freshman in college. I can remember I developed pneumonia probably because my roommate from "He$$" smoked like a smokestack. There was no escape from it. After my bout with pneumonia, it took months to recover to the point that I could function and live a regular life. I had bouts of CFS every time I was exposed to someone who was sick. I could almost bet on it. It made college life difficult, and it took me twice as long to finally finish my education.

Since 1983, I have been in and out of remission for my chronic fatigue syndrome, depending on what stressor I am exposed to. I have traced the causes of most of the time I relapsed to mold, sick buildings, tainted well water, surgery, toxic exposures, and severe stress. I now know what I have to do to stay healthy, but sometimes life gets in the way. There is no way to avoid every environmental stressor a person will encounter. You can't live life that way. In 2006, I was put in a dangerous situation that triggered my PTSD and MCS, and I finally found a doctor who would help. This doctor had worked for the military and had worked with Gulf War Illness patients. I was thankful to have found him, as he was only the second doctor I met who understood CFS and MCS. I appreciated his advice and his skill. Interestingly, believed that nutrition could heal. He put me on a nutritional food supplement for a while. It seemed to improve my symptoms. Back then, they didn't know about how polyphenols work. Today, we understand a lot more about their biological functions.

My education and work experience are in biology, public health, and health education.  After I saw Dr. Anderson, I took it upon myself to learn from a scientific perspective about these diseases.. I believe that I have genes that do not work together correctly. It may be a variant or an epigenetic changethat runs in my family because I also believe my mother similar problems too. I watched her suffer for years with weird ailments and mental health issues. I believe both were connected. Through my research, I learned about NRF2 and its impact on the antioxidant system and neurology. One thing I have not mentioned is that I have neuropathy and the doctor I mentioned above put me on B12 shots for my legs. I now think that the problems with my legs involves dopamine signaling  which may improve with B12. In addition, it was when I made the connection between NRF2 and neurology that I started to learn about the biological pathway it regulates. Now, I think every researcher knows about NRF2, but I think I must have been one of the first that realized that the foods that activate it might help my MECFS and MCAS/MCS. I never did read the label of the food that doctor gave me, but I would guess it had a lot of NRF2 activators in it. It tasted really good, so I never questioned what was in it. 

Today, I am back in "remission" and with the help of a network of experts, I have learned more about my specific form of MECFS. It seems that I have a "pathological" relationship between HIF1 and the transporter MCT1 that leads to lactate accumulation during certain conditions that activate the stress response. In animal studies, the inflammatory cytokines TNF-a and IFN-y can impair the function of the MCT1 transporter, which may occur in my case. Or it just doesn't work to the level it should. In either case, it contributes to my neuropsychiatric issues. Technically, lactate is supposed to prevent mast cell activation (MCAS), but this does not occur when the MCT1 function is impaired. Therefore, it seems from all that I have learned that my mast cell activation (MCAS), PTSD (Anxiety), and MECFS all drive one another, and each affects the other differently and impacts different pathways.