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Treatment that is working for ME!

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 back on July 2, 2014.

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 run through Livewello 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 dr robert naviaux" to learn more. CDR is discussed by a number of clinicians but folks really seem to like Naviaux. Also the Facebook Group RCCX Theory is led by a physician and I found tons of useful info there.

Along this vein, many people find formal neural reprogramming programs like ANS Rewire and Gupta and DNRS to be useful. You can read about ANS Rewire and Gupta in the ME CFS Forums as their creators both claim to have had ME CFS. I am not sure what Annie Hopper's condition was but she is the creator of DNRS. Some people like faster EFT, which I am told differs from EFT/tapping.

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. A physician friend said using the app was life changing for her.

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 (an electrolyte) keeps my temp regulated and avoids those nasty night sweats and feeling of burning with fever. A PhD in clinical nutrition told me the sea salt helps the cells to absorb the water and use it. 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. It was life changing for me. I am alive again.

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 ME CFS 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, pollution, the MTHFR mutation inhibit the body from detoxing normal everyday toxins and promote oxidative stress.

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 -- jut to give you an idea: 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 -- or as I would put it, one day we break!

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. Dr. Rey also told me that for the first time, the ME CFS doctors and the environmental illness doctors will be getting together at the same conference this Fall. So I think we are going to see a shift in treatment modalities and better outcomes.

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 so choose wisely). Here are a few leads: 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 will update this blog after I speak with Dr. Rey and see what else we are going to implement as far as a treatment program. I have lots of research that I want to get her opinion on. For now, I am cleaning my environment (car, RV, and home) from VOCs, dust, moisture, plastics, and probably other things that I cannot think of right now. I am sleeping in total darkness (for melatonin production) and use an EMF pad on my laptop. I have removed electronics from my bedroom and use the nighttime setting on my laptop so it is set to change to warm light at sundown. I am trying to find an EMF meter to get a reading on my house. I also plan to have my well water tested for chemicals (this is NOT part of the normal testing that is done on well water) and test my indoor air quality (ERMI or HERTSME2).

IN SUMMARY: Based on what I have learned from Dr. Rey and patient testimonials and research that I have read, ME CFS appears to be caused by an accumulation of environmental toxins (biological and manmade), genes that predispose us, ANS dysfunction, etc... I do not want to share the illustration that Dr. Rey created for me with all of the things that come into play because I did not ask her permission to do so.

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. Instead I choose to go about my business of living my life, which has been on hold for the last 2-years. 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.

Comments

Congratulations and thank you so much or writing this long post. So encouraging and inspiring! I hope you write more when you are able about what you are able to do now. Can you exercise? etc.
 
I agree with everything you said. Thank you. I did everything you did except for seeing a (CFS) specialist. I “ detoxed “ mold” and still sleep outdoors. ( mold avoidance but not extreme) I am doing a modified DNRS while hiking in a state forest. I can now hike for 5 miles . I am getting my pharmacist license renewed and am going back to very part time work as a pharmacist— something I thought was impossible due to “ brain fog “ but this is not an issue as long as I stick to a strict rest schedule. I am going to try the sea salt.
I still need to rest 2 hours in the afternoon from 3-5 pm. I do not usually go out at night but have a life again.
. I hope to keep improving reading this gives me encouragement to keep going. This has been a 3 year climb so far. I became ill in 2009 fibromyalgia) . 2010 CFS after getting a flu shot. floundered around for 6 years going to doctors no real improvement.
In 2016 went on a mold sabbatical ( Death Valley) this is when I got on the path to healing. Thank you .
 
@SueJohnPat I LOVE YOUR STORY!!! How are you doing now? And how do you sleep outdoors in the Winter? I am so happy for your health gains. How did you go about mold avoidance and detox? How long were you in Death Valley and how did you tolerate the extremes of temperature living outdoors?

I've read some really interesting things tonight about dysbiosis and MECFS. I will post a blog entry.
 
Congratulations and thank you so much or writing this long post. So encouraging and inspiring! I hope you write more when you are able about what you are able to do now. Can you exercise? etc.
If it was not for the weight gain then I would almost feel like myself. But I cannot do near the physical or mental exertions that I was able to do prior to getting ill -- I used to run a 3k 3x a week and had a job as a digital strategist within medical education, plus I published a website and did writing and social media and biz dev for it, plus I was a landlord, plus I traveled a lot, and was involved in other social activities.

I do back slide when I don't take the supplements.

I am changing locations to see how that effects me. I think an integral part of my healing was, unbeknownst to me, being in an environment where I am not triggered. Apparently I have mast cell activation syndrome and histamine intolerance.
 
@SueJohnPat I LOVE YOUR STORY!!! How are you doing now? And how do you sleep outdoors in the Winter? I am so happy for your health gains. How did you go about mold avoidance and detox? How long were you in Death Valley and how did you tolerate the extremes of temperature living outdoors?

I've read some really interesting things tonight about dysbiosis and MECFS. I will post a blog entry.
 
Hi, I have been not been here for awhile. I sleep next to my house in a travel trailer. I have had some setbacks but am moving forward. Hi I am doing well. It is a very long and slow process,, I sleep in a travel trailer ( we bought a new tab 400) . Next to my house. We moved all of our furniture from our old house . I had a reaction after about 4 days. I doubled down on DNRS rounds and now I can be home all day and have no reaction. I am also on the noom diet and am losing the 30 ponds I gained .
I am looking for a part time job. I do not come here often anymore . I am not 100 percent but. Between 70 and 90 percent .
I still hike in the woods and am in nature as much as possible. I am mellow and don’t let pain in the @@#$ss people bother me, I hope you are doing well.
 
Congratulations and thank you so much or writing this long post. So encouraging and inspiring! I hope you write more when you are able about what you are able to do now. Can you exercise? etc.
I have not crashed (had PEM) in a year, give or take. Recently I did have this happen and I am not really sure what it correlated with, as in I do not feel that I exerted myself more than any given day. I believe the crash lasted for one day, if I recall correctly.

I am not running a 3k 3x a week like I did before I became ill. But I am not "mostly housebound / often bed bound" either. My recent visit to Dr. Rey shows a 20% improvement on the Karnofsky performance scale, so I am at 50% I believe. I am not as well now as I was when I wrote this post and I believe that is because I am exposed to a toxin or toxins in my environment.
 
You sound like me. I now have good days and weeks then a week where I can function but have no enthusiasm and get frustrated by my limits. Ugh it is hard to explain. If I try to push through I know now to just STOP!, but may only last a few hours.
 
This is interesting. I have the MTHFR double variant -- very rare -- and this double variant means far more depression than the average bear. Not sure if your doctor explained the variant in this context but a single variant means, according to my psychiatrist, having access to roughly 70% the serotonin of a healthy individual. The double variant means roughly 20%. I also have PTSD--several bouts of it, sadly. Unlike you, I live in an apt with visible signs of mold, and I tested positive for all 4 mycotoxins with Real Time Labs, and 3 of the 4 are through the roof. I'm currently expanding my supplements with my fatigue specialist to encompass some goodies to expedite releasing the toxins, and I'm moving to a new apt in two weeks. My doctor's conclusion, which I agree with, is the mold toxins are the leading factor in my ME/CFS symptoms, and stress is a secondary. I believe the stress is what triggered my symptoms to appear, but had I not been so stressed the last 18 months, I'd have likely started to experience my symptoms eventually, as I've lived in my apt for over a decade, and it's clear to me now that the little spots I saw from the get-go are truly toxic for me. 25% of people can't fight off mold toxins. You and I are two of them.

Thanks for the DM. I'll read up on Dr. Myhill and Dr. Petrison, and will bring anything new to my doctor.
 

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