I was dying. Now I am healed.

I was dying. Now I am healed.

My ME CFS Specialist believes that ME CFS is caused by a number of factors coming into play, versus once pivotal incident happening to me as I had initially thought. I became sick after a trip to the Jersey Shore and NYC that landed me overnight in the hospital from an acute attack.

It seems to me that ME CFS is the same disease that is called CIRS by environmental illness doctors. The symptoms look identical to me. The great thing is that CIRS can be healed. I'll tell you about the ME CFS Specialist who is helping me and share a number of resources with you.

First order of business is that I've met a number of patients who have figured this out and saved their own lives. For example, I recently found the blog ParadigmChange.Me, which is led by PhD Lisa Petrison, who was dx with ME CFS. She and Erik Johnson (who survived Incline Village - the first ME CFS outbreak in the US) have published free books and other helpful resources. There also is Bryan Rosen who has a bunch of free podcasts with useful info. So, it isn't just a trial showing spotty results or doctors with a theory that some drug might work. Erik, Lisa, Bryan and many others are living proof that we can heal. And why I believe this is true is because I have experienced it for myself.

Now... if you visit the resources by Lisa, Bryan, and Erik then you will find that they heavily focus on mold avoidance. Please do not let that turn you off to what they have to say just because you do not think mold is a problem for you. That is what I thought about myself, too, only to later learn from my ME CFS specialist that I test positive for mold toxins. More about this later... but let me be clear that I am NOT saying ME CFS is a mold illness only.

I was aware that a bio-toxin (an enterovirus or bacteria from contaminated ocean water) and an emotionally traumatic event had caused my outbreak but I was unsure how to heal. So for the year+ that I was often bed bound and dying, I researched much of the science and clinical study outcomes that are easy to access on the internet. It is worth noting that I have many expensive tests proving that I have ME CFS (2-day CPET, PET Scan, MRS, etc etc etc plus exclusionary tests showing that I do not have something else). As well, I have confirmation of the Dx from multiple ME CFS specialists.

And based on my research, mostly of clinic study results, I put myself on supplements and prescriptions to either help me detox or support my immune system and restore homeostasis where I was deficient nutritionally or had too much or too little hormone, and things like that. As just one example, my 23andMe data show that I have the MTHFR mutation and that effects methylation, so I use a supplement for that. Please NOTE that I had been eating a mostly organic diet and living very healthy for many many years. So I did not understand at first how my body did not fight off this "infection." It really wasn't until I got "unstuck" from that frame of mind that I was able to begin to move forward and heal.

I also learned about my genes and a faulty Autonomic Nervous System that contribute to my illness. So as my energy began to rebuild, I was able to engage in practices to support emotional health, release trauma, and rewire the brain. Let me be very clear here that ME CFS is NOT only a problem with the ANS, and it is NOT psychosomatic or all in our heads.

Please also NOTE that emotional trauma does not have to be something devastating like PTSD or abuse. I had an idyllic childhood and normal adulthood. But with a faulty ANS I get stuck in flight fright or freeze from "more minor" (for lack of a better word) types of emotional stress and trauma occur. Google "cell danger response" to learn more. And the Facebook Group RCCX Theory is led by a physician and I found tons of useful info there. Many people find formal neural reprogramming programs like ANS Rewire and Gupta and DNRS to be useful. Some people like faster EFT. This is not the route that I took but I did find the 4 free intro videos by ANS Rewire to be extremely enlightening for understanding the ME CFS and ANS connection.

I did EMDR with a therapist. You can learn more about that from Dr. Google. I also used the HeartMath app which focuses on breath work and bringing the heart and brain into coherence. Please visit their website to see all of the published study results supporting their results and learn why this works.

What is key for regulating my ANS is drinking lots of water with sea salt, prayer and meditation, and breath work (I use pranayama now) every day are extremely healing. The water with sea salt keeps my temp regulated and avoids those nasty night sweats and feeling of burning with fever. Prayer, meditation and diaphragmatic breathing are extremely calming to the nervous system. The HeartMath app also works in this regard.

There is more to healing from ME CFS than this, but this is where I started.

Then I met Dr. Irma Rey at Nova Southeastern University, an ME CFS Specialist in the same group as Dr. Nancy Klimas. And she said I was on such a good protocol that she thought that I had been working with a functional MD. Ha! I guess I did a good job with my research. I only have a BA degree, but I was a health writer for a long time and had a lifelong career in pharmaceutical marketing and medical education. I also have excellent critical thinking abilities.

Dr. Rey calls us her canaries. I've seen the environmental illness doctors say this too, an analogy to canaries in the coal mines who were the early warners of poor air quality. Dr. Rey showed me what she thinks ME CFS is, and she says that she attended an environmental illness medical conference and said "ah ha" that's an ME CFS patient. I do not know if Dr. Rey thinks ME CFS is CIRS (that is what I and several other patients I've talked to think it is). But she does think it is caused by a variety of environmental pollutants, bio-toxins, genes, viruses, EMF, a faulty ANS, and other things like that which we accumulate over time and which build up in the body. She believes that the event that happened to me was more like the straw that broke the camels back -- the tipping point for me but that I had been accumulating all of these toxins in my body for a long time and holding onto them.

NOTE that things like EMF, 5G, mold, the MTHFR mutation inhibit the body from detoxing normal everyday toxins.

I've never lived in a moldy house so I did not believe that mold was a problem for me. And it is funny because Lisa Petrison PhD writes that people will often deny that mold is a problem in their illness. But here is the thing to know: Mold toxins cannot be seen -- it is not mold per se that is the problem, it is the spores that they release. My tests came back and I have mold mycotoxins that are "off the charts" for two types of mold -- neither of which is black mold. Rather they are Ochratoxin A and mycophenolic acid.

These then leave us susceptible to other infections and toxins like EBV, HHV6, Fifths Disease, CMV, enteroviruses, etc, -- I have high titers for several of these. I also have heavy metal toxicity and chemical toxicity. So what Dr. Rey showed me made a lot of sense. We went through a very detailed history of everywhere that I have been where I could have been exposed to toxins -- eg remodeling old houses, well water, bottled water, trips to 3rd world countries, living in the city, etc etc etc.

We are like a toilet that cannot be flushed to remove the waste. There is an environmental illness doctor who has a drawing of us as a rain barrel filling up with toxins that we cannot release and then one day we overflow.

As far as I know, Dr. Rey is the only ME CFS specialist that has figured this out. She says her patients are having a lot more success with her new protocol versus when she was just using antivirals. You can make an appointment with her at INIM in FL. Or you can see a GOOD physician who is trained in treating environmental illnesses (I presume not all know what they are doing or are good). Check out Dr. Neil Nathan's website and his book TOXIC, Dr. Lisa Nagy as she has great info on her website, and Dr. William Rea. The Shoemaker protocol is another option -- visit the website Surviving Mold to learn more and find a physician.

Please get yourself tested — Great Plains Labs, GPLTox and Mycotox profiles. The VCS test is a great online screener for Biotoxins illness. Go to VCSTEST (dot) com. It is free.

I am not going to answer any questions or continue the discussion as there is nothing more for me to say and I cannot give medical advice. I choose not to devote any further time because being in negative energy is not conducive to my healing. Instead I choose to go about my business of healing. However I shared this vital information because I felt that I could not standby and be silent while people are dying from ME CFS like I was and not let them know that there is a solution. I hope this helps you.

I am so grateful to be alive.