NAC is a precursor to glutathione production in the body. According to my research, most people with ME benefit from taking this supplement and many clinicians believe it is superior to taking glutathione. You can Google it or use Google Scholar and I've posted a few links below to articles that may be of interest. I take 600mg 3x a day, which is the recommended dose for PwME based on my research.
Anyway, I want to share that I found a very good sale on NAC. I have not done business with FreshHealthNutrition in the past so I cannot vouch for them. But its a great sale so I thought I'd give them a try. I spend a small fortune on supplements so wherever I can save is very helpful.
There is a flat rate shipping of 5.95 per order. So I ordered 2 bottles of NOW NAC 600 mg 250 capsule for about $25 + shipping. That's a good price as most website are selling one bottle for ~$18. I sure hope this product is not near expiry date or anything like that. There is a phone number to call customer service but I just threw the dice and ordered.
I'll post in the comments when I receive them and let you know about my experience. BTW NOW brand is a reputable manufacturer of supplements and generally is well-priced.
My sleep had been TERRIBLE (trouble falling asleep and trouble staying asleep) when I moved into this house. But this year I have been on a supplement protocol that includes a MELATONIN tablet at night and my sleep has been perfection. Just like that. And sleep effects sooooo many things that have to do with health and well being and healing. Therefore it is fundamental to healing.
Sleep is part of the SHINE protocol that people pay a lot of money to follow. The S in SHINE stands for Sleep. Sleep replenishes your body's energy and helps heal your muscles. Inadequate sleep will leave you exhausted and in pain. Because your sleep center isn't working in CFS/FMS, aggressive sleep support is necessary.
From WebMD on MEL and sleep https://www.webmd.com/vitamins/ai/ingredientmono-940/melatonin
Low circulating levels of MEL are linked to disease https://www.ncbi.nlm.nih.gov/pubmed...YABJTOW230YQ7H53pE1MJlWzR44kvfU9MG2D6zDnH6zPI
Also it is very VERY very important to have a room that is DARK. We need to get dark adapted again, which is our natural state of being at night. It is conducive to sleep and sleep quality. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2596746/
Most especially interfering with sleep is BLUE light from electronics -- the TV, laptop, iPhone, iPad, Alexa (all things that I have in my bedroom except a TV). Lesser thought of WI FI items might be door bells, security systems, smart meters, and cell towers. An acquaintance who is a telecom specialist told me how to figure out if there are many cell towers in your area: "A simple exercise that I use. How many FM Radio Stations can you recieve in your car while parked in you driveway. First count the number using scan mode. Those are the strong ones. Second step thru and find the weak ones. Repeat this at midnight when you'd normally be asleep. Did the number of strong go up? It is Likely. The number of FM easily relates to the number of cell towers you likely have too."
Some people that are sensitive, like we canaries, are disturbed by EMF the electoermagnetic waves that are especially powerful and disruptive from electronics https://www.safespaceprotection.com/emf-health-risks/what-is-emf/ So in addition to removing electronics from our bedrooms and turning off the WI FI at night, some people even use Faraday Canopies to shelter their beds and themselves from EMF (smart meters, neighbor WI FI, cell towers, etc). My telecom specialist says, "I only support the Swiss EMF fabric cuz they supplied attenuation charts." He also says you may need faraday fabric under your bed, say if you live in a condo or apartment with people beneath you, etc. As for me, I live in a remote area on a mountaintop so I am not using a Faraday canopy.
However I do use a SafeSleeve to protect my organs from the radiation from my laptop, because I spend a lot of time on my laptop and I rest it on my lap versus a desk https://www.safesleevecases.com. Based on my research the SafeSleev offered the most protection for the best price point.
Along that vein, Dr. Rey told me to wear cotton and natural fabrics as much as possible. That's because I have a toxic overload of various "stuff" manmade (petrochemicals) and natural (like mold). So I went and got a 100% natural and organic pillow. It's filled with Buckwheat. My pillow just arrived and I must say it is hard compared to my Ghost Pillow and gel pillow (those are made of chemicals!!!). But the website says to give it a try for 30-days as your body adjusts. So I will try it. My partner loves the pillow from the get go. https://www.pinetales.com/pages/why-a-buckwheat-pillow
Here is further info on creating a sleep sanctuary http://biotoxinjourney.com/sleep/#Make_a_Sleep_Sanctuary
UPDATE: I now use a millet pillow from Pinetales.com It's the same company that makes the buckwheat pillow above. My partner loved it so much that I never got it back. LOL. I think it would be too hard for my likes. But the millet pillow is fantastic. It is supportive but soft.
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, here are some further thoughts from people on chronic inflammatory response syndrome and ME/CFS. I shared before that some people think these are the same condition. Recently in one of my FB mold groups a person asked this question, if they are the same disease. And here is another perspective that I wish to share. Some people believe that CIRS causes ME/CFS but they are not the same condition because people with CIRS do not have viruses like EBV, HHV6, Parvovirus, etc., commonly found in ME/CFS. Some people also believe that viruses also are a cause of ME/CFS; in other words, ME/CFS can be caused be either CIRS or a virus. These are theories that I am sharing. Nothing has been proven, yet.
What I believe is that both CIRS and viruses come together to create ME/CFS. The really great news is that CIRS responds well to treatment. From Shoemaker's website:
The opportunity for patients is that despite the multi-system, multi-symptom nature of CIRS, it is eminently treatable if managed by a clinician skilled in the diagnosis and treatment of CIRS. Hope is available. Cures are possible.
What this means to me is that everyone with ME/CFS will feel significant improvement by treating CIRS. This is my opinion but it TRUE for me. Why? Because it is what is working for me. Because I have spoken with other people whom it has worked for. Because Dr. Rey says her patients are responding to this treatment significantly more than when she treated with antivirals. Because the exercise physiologist at Nova who works across all of the MDs and PAs who are treating ME/CFS patients says Dr. Rey's patients are getting better than the other patients.
I also stress the importance of a spiritual component such as meditation and deep breathing and a positive attitude. More on that topic another day.
I have attached Shoemaker's diagram of the bio toxin pathway that leads to CIRS. This is in the public domain and thusly can be shared with attribution. What he refers to in the diagram as HLA is a gene that he believes is associated with the inability to clear the toxins from one's body.
Thank you to the people who sent private messages to me. However, I do not have the time to respond. I simply want to share some information here on the blog that may help people on their journey. My original post has tons of resources for people who want to learn more.
Understand that I wrote "I was dying. Now I am healed." That means that I am no longer dying. Do not read more into it than what is stated.
Yes, I have all the symptoms that are attributed to ME CFS. I believe I wrote about all the very expensive tests and results in my original post. I was in several clinical trials. That is how I was able to "get" the expensive tests. The big trial that I was in is still recruiting (NY and CA). Search clinical trials.gov to find a trial near you.
And if you have tests showing that you have high levels of toxins and you have worked to detox and heal but it has not worked then I would suggest that what you are/were doing is ineffective. How do you feel? What do your recent tests show? If your load is high then that is additional proof that what you are doing is not working. There are many resources listed in my original post where the authors and communities have gone into tremendous details and explanations about what works and has not worked -- it can be extreme for some but they are no longer dying, some have even fully recovered. This does not mean they are cured -- if they go into a sick environment they become ill almost immediately or at least quickly.
Dr. Shoemaker has a list of tests that he recommends on his website Surviving Mold. These are blood tests and thus there is a better chance of insurance covering them. Some insurers do cover the tests from Great Plains Labs that I had done and I believe that info is published on their website. Or you can call them or your insurance company to inquire.
Here are some interesting drawings from Dr. Lisa Nagy, which I believe she repurposed from Dr. William Rea. My ME CFS doctor, Irma Rey, drew something similar for me regarding the etiology of ME CFS. Nagy's drawing are on the web in the public domain so I am allowed to share them with citing her versus the drawing that Dr. Irma Rey shared with me in her office.
We are the canaries.
The video from the International Society for Environmentally Acquired Illness (ISEAI) mentions many of the illnesses we are dealing with like CFS, POTs, MCS that they claim are caused by environmental factors. They claim the symptoms can be reversed with many of the approaches that I mentioned in my first blog entry. It is a recap of the first ISEAI medical meeting. https://www.youtube.com/watch?v=tqHT4L_xjyM&feature=youtu.be&fbclid=IwAR1g1Kq_XVg62xgZN8Rfw9PIUGzgGhFoRJZU5t1AhnTlwPXKHd61bJfKCcI
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.