So, in my first blog entry I wrote extensively about the turnaround that I had. This past week-ish, I stopped taking all of my supplements and meds (I am on a few RX meds but a ton of supplements). It wasn't really intentional and what happened was that my pill boxes/organizers simply needed to be refilled and I procrastinated. And what resulted from d/c my supplements and meds is that I crashed. I feel sick to my stomach. I have PEM. My head is killing me. I am in pain. My ears are ringing. My face is on fire. Etc. You know the deal.
So this morning I filled three weeks worth of pill boxes. I feel improved even after taking just one dose. Let's see how many days it takes to "recover."
No doubt my regimen works for ME. How far can I go?
What is the cause of my illness?
I spoke with Dr. Rey yesterday. She is my ME/CFS specialist at Nova Southeastern University's Institute of Neuro Immune Medicine in FL. I asked her what is the connection between CIRS (chronic inflammatory response syndrome) and ME/CFS. And Dr. Rey said they are the same thing, which is precisely what I had thought. She said the environmental doctors really showed "us" the way. She also said ME/CFS is a hodge podge of illnesses and that many doctors keep looking at just one aspect of it, trying to find "the" cause. I am paraphrasing Dr. Rey and working from memory so keep that in mind.
The body eliminates toxins through the liver, kidneys, intestines, lungs, lymphatic system, and skin.
I do not sweat much, which is an important part of the body's detoxification process via the skin. I used to sweat. So what happened? I thought it was because I got thin and was in great condition. HA. I am no longer thin and in great condition and I still don't sweat. Shortly before I became ill with ME/CFS I had extensive body contouring plastic surgery. And my lymphatic system was disrupted by surgical scars across my entire body and the removal of lymph nodes in my armpits. The lymphatic system is another important detox pathway for the body.
I've had chronic constipation for many years. It was so bad that I now have a hernia, a prolapsed bladder, uterus, and rectum. And I have recurrent SIBO. This seemed to have come about when I began taking mega doses of iron owing to developing iron deficiency anemia. I later learned that iron is really bad for the gut microbiome. If I recollect correctly, it feeds the bad bacteria and/or wrecks diversity of bacteria. My recent results from Genova GI Effects test show I have no lactobacillus and I have pathogenic bacteria in my gut -- this was 2 weeks after a treatment of rifaximin + neomycin that should have wiped out the pathogens. Why are these pathogens resistant to treatment AND what doctor can help me?
I don't have chronic kidney disease but I have several markers for it. I would at least say there is some dysfunction there.
So there seem to be a number of detox pathways that are compromised in my body. Add to that, mold compromises detoxification. And I, like the majority of PwME test high for Ochratoxin and one other mold mycotoxin whose name I don't recall at the moment. Here's a detailed article on mold mycotoxins https://goop.com/wellness/health/how-to-identify-hidden-mold-toxicity-and-what-to-do-about-it/
When I moved into this house I became much more ill than I was previously. This is where I became mostly house bound and often bed bound. This is where I developed tinnitus and TMJ. This is where my ANS went haywire. I thought it was owing to severe emotional trauma and physical stress. And while I do not doubt that it was, I have to wonder if there is a toxin in the house to which I react. I had a sudden weight gain when I moved here and the body will often add fat for protection because it pulls toxins away from the organs and out of the blood and stuffs them into the fat where they cause less harm to the body. What was very eye opening to me was how much better I felt when I left the house for 3 weeks. It is important to note that my partner is not at all affected by the environment of the house.
So I have pathogenic bacteria, mycotoxins, and compromised detox pathways. Are these causation or simply effects of an underlying causation? How do the vagus nerve and ANS (autonomic nervous system) and CNS (central nervous system come into play? Do I have CCI as a root cause? One of my doctors said that compression in the neck could impinge those nerves that regulate all the processes of the body.
How many people are in the same boat as me?
So this morning I filled three weeks worth of pill boxes. I feel improved even after taking just one dose. Let's see how many days it takes to "recover."
No doubt my regimen works for ME. How far can I go?
What is the cause of my illness?
I spoke with Dr. Rey yesterday. She is my ME/CFS specialist at Nova Southeastern University's Institute of Neuro Immune Medicine in FL. I asked her what is the connection between CIRS (chronic inflammatory response syndrome) and ME/CFS. And Dr. Rey said they are the same thing, which is precisely what I had thought. She said the environmental doctors really showed "us" the way. She also said ME/CFS is a hodge podge of illnesses and that many doctors keep looking at just one aspect of it, trying to find "the" cause. I am paraphrasing Dr. Rey and working from memory so keep that in mind.
The body eliminates toxins through the liver, kidneys, intestines, lungs, lymphatic system, and skin.
I do not sweat much, which is an important part of the body's detoxification process via the skin. I used to sweat. So what happened? I thought it was because I got thin and was in great condition. HA. I am no longer thin and in great condition and I still don't sweat. Shortly before I became ill with ME/CFS I had extensive body contouring plastic surgery. And my lymphatic system was disrupted by surgical scars across my entire body and the removal of lymph nodes in my armpits. The lymphatic system is another important detox pathway for the body.
I've had chronic constipation for many years. It was so bad that I now have a hernia, a prolapsed bladder, uterus, and rectum. And I have recurrent SIBO. This seemed to have come about when I began taking mega doses of iron owing to developing iron deficiency anemia. I later learned that iron is really bad for the gut microbiome. If I recollect correctly, it feeds the bad bacteria and/or wrecks diversity of bacteria. My recent results from Genova GI Effects test show I have no lactobacillus and I have pathogenic bacteria in my gut -- this was 2 weeks after a treatment of rifaximin + neomycin that should have wiped out the pathogens. Why are these pathogens resistant to treatment AND what doctor can help me?
I don't have chronic kidney disease but I have several markers for it. I would at least say there is some dysfunction there.
So there seem to be a number of detox pathways that are compromised in my body. Add to that, mold compromises detoxification. And I, like the majority of PwME test high for Ochratoxin and one other mold mycotoxin whose name I don't recall at the moment. Here's a detailed article on mold mycotoxins https://goop.com/wellness/health/how-to-identify-hidden-mold-toxicity-and-what-to-do-about-it/
When I moved into this house I became much more ill than I was previously. This is where I became mostly house bound and often bed bound. This is where I developed tinnitus and TMJ. This is where my ANS went haywire. I thought it was owing to severe emotional trauma and physical stress. And while I do not doubt that it was, I have to wonder if there is a toxin in the house to which I react. I had a sudden weight gain when I moved here and the body will often add fat for protection because it pulls toxins away from the organs and out of the blood and stuffs them into the fat where they cause less harm to the body. What was very eye opening to me was how much better I felt when I left the house for 3 weeks. It is important to note that my partner is not at all affected by the environment of the house.
So I have pathogenic bacteria, mycotoxins, and compromised detox pathways. Are these causation or simply effects of an underlying causation? How do the vagus nerve and ANS (autonomic nervous system) and CNS (central nervous system come into play? Do I have CCI as a root cause? One of my doctors said that compression in the neck could impinge those nerves that regulate all the processes of the body.
How many people are in the same boat as me?
