Biohacking ME and the cause of my illness

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?

Comments

I was in the same boat as you! After moving into an older apartment several years ago I slowly started getting sick. It came on slowly and I started noticing tinnitus, weight gain, and jaw issues before I really noticed PEM. At one point I got too sick to walk two blocks to the bus stop to get to work.

It turned out there was mold growing in the closet where the HVAC was. When I quit using the HVAC I improved but wasn't cured. I got worse again when I moved to a damper and generally moldier city.

When I was living in the moldy apartment my husband and I thought that it was making me sick, but we didn't connect his symptoms to mold until we moved and he started getting better.

He had tinnitus, TMJ, increased OCD symptoms (he been diagnosed years previously and been managing it well before we lived in the apartment), brainfog, and a couple of persistent minor skin infections that his body just couldn't manage to clear. All of those issues cleared after we started minimizing exposure to mold in our house. Other than some dental work that might have helped the TMJ, he didn't try any other treatments.

I am extremely moderate now. I moved to Phoenix about two months ago and I have made huge gains in health even though I wasn't living in the cleanest places. It seems like for me most of my ME/CFS symptoms, ANS issues, and even some pressure against the back of my eyes were downstream from mold exposure/ MCAS triggers.

I can't answer your questions about how all of these things are related. I have been muddling through based on the theory that it's an immune reaction to various environmental triggers that is messing up all of the systems in body. It seems like for me getting away from certain molds has allowed those systems to start re-regulating. A few weeks after I moved I started trying supplements that can address MCAS but I haven't tried any other new treatments.

I hope you are able to figure something out and get away from the living situation that seems to be making you worse! I found that the paradigmchange.me website and all of Julie Rehmyer's work was invaluable (https://www.julierehmeyer.com/news/...t-be-your-problem-heres-some-practical-advice).
 
HI marlunette
Thank you for taking the time to respond. I am overwhelmed right now with the prospect of moving, and some concerning test results that came back, and the fact that Dr. Rey has me using natural binders instead of CSM and DSMA. When I first became ill and was still very healthy this is the route that I went, "natural," working first with a naturopath then with a clinical nutritionist. IT DID NOT WORK. I became seriously ill. So now here I am again with a doctor who has the ability to prescribe CSM and DSMA and other treatments that I asked her for that seem very important... and instead she is treating me pretty much the same way that the other two people did and whose protocols failed me. I am going to email Dr. Rey and explain the matter. I will press her for the RXs. I am so utterly disgusted now with everything.

Are you working with a doctor?

Thank you for the resources. I agree that paradigmchange.me is a wonderful resource. I have not gotten through the material yet, not even close. My head is spinning on where I should move to... where will I get out of mold... where will I like to live... where will there be a doctor that can help me?

Julie Rehmyer is new to me so thank you for the virtual introduction. It does look like an excellent resource. Thank you for that.
 
I hope that Dr. Rey is able to help you!

I did mold avoidance without a doctor. There were no ME/CFS specialists in my city and the other doctors I saw didn't really believe in ME/CFS or mold as a trigger.

I have been seeing Dr. Chheda at the Center for Complex Disease since March. She has prescribed things to address MCAS which I have had some success with. I haven't really worked with her on mold issues because I felt like I mostly have it handled.

I haven't tried any detoxing or binders other than frequent sauna use, which I did because it felt like it gave my immune system a temporary boost. From what I've read of the Shoemaker protocol, and from Lisa Petrison's approach, binders don't do much unless you are out of the moldy environment first.

I felt like my reaction to mold was tied to my immune system rather than toxins. I have had MCAS like symptoms my whole life, so that might be the issue for me.

Dealing with mold issues can be overwhelming because there is so much to take on. One encouraging thing I have found is that small steps can help me feel better enough to take bigger next steps. It's still a lot of experimenting and self testing though.
 
Thank you for writing me again. There aren't any ME CFS specialists in my state, either. I am glad Dr. Chheda is helping you. I've heard good things about her and the center. Does she accept insurance? I am quite certain that my mother had undiagnosed MCS and MCAS, thus wonder if I have it, too.

The supplements that I put myself on several months back, along with the scripts that I convinced docs to give me have allowed me to recover to the extent that I am no longer dying and I've even have enabled me to plant a huge garden without PEM following. That is a quantum leap from being mostly bed bound and dying. So, I wonder if this is only buying me time... like bailing water from a sinking boat to stay afloat... there's still a hole in the boat?

Dr. Rey said to get my house tested professionally before I move. I have some reservations about that. A gal on another four today told me that they decided to remediate and they are already thousands into it and not done, because they found more problems than what were perceived. She told me to get out before I go down that rabbit hole.
 
Congratulations on getting better and being able to plant a garden! That is huge! But if you are wondering if there is still a hole in the boat, I would trust your intuition. Late last year I thought I was in remission after trying new supplements and then I pushed too hard and crashed with new and scary symptoms. Be careful!

Dr. Chheda does not accept insurance. I chose Dr. Chheda because she knows about MCAS and no one else on the west coast takes insurance that I know of. I think Dr. Bateman in Utah is the nearest specialist to me that takes insurance.

If your mom had the symptoms of MCAS it might be worth getting checked out! My dad probably has undiagnosed MCS (and maybe MCAS) so it took me years to realize that it was even unusual! I thought it was normal to get headaches from certain smells and deal with it through avoidance. He recently joked with me that he has neurasthenia because he is so sensitive to loud sounds and bright lights. I definitely got this from him, hahahaha.

I would get out instead of doing mold testing too. My husband and I are renters so we've always moved instead of dealing with remediation but I've heard so many horror stories. It sounds like it can be a never ending and expensive process with no guarantees.

My one experience with mold testing was at work after a conference room flooded and it made me very sick to go into it. HR hired someone to conduct a mold test on the conference room. The test didn't show much of anything even though my reaction to it was strong. I feel like the tests were developed for average people and not hyper-sensitive people. The room did get remediated and I was able to go in there again though I wouldn't have wanted to live in it!
 
marlunette thanks again for your reply. I am finding it very difficult to determine where to move.

For one, we have really f*cked up our planet with pollution and the state that I'd like to move back to, the Indianapolis IN area, is very polluted. According to a 2016 EPA report, Indiana is sixth in the country in terms of toxic release. It's no wonder that I have heavy metal toxicity.

For another thing, it is almost impossible to find a location that is temperate year round w/o high humidity (both to reduce mold exposure and because I feel best in that climate). There are several locations on the West Coast but they are completely out of my price range. I'd live in the Monterrey area if money were no object. I even looked into buying affordable housing or an RV lot but they don't seem to exist.

Here is a map from 2016 that shows the most polluted states https://www.indystar.com/story/news...ces-sixth-most-toxic-chemicals-u-s/825601001/
 
Figuring out where to go is so hard! My husband and I opted for a city where we had family support and I felt good enough but it always leaves me wondering if I would feel amazing in a more remote place.

I loved visiting Indianapolis before I got sick! My husband wanted to move there too! It seems like the summer humidity and potential pollution might be too much though.

Have you visited any of the places you are considering to feel them out? I found that I had to visit places to really understand how viable they are.

I am from the west coast originally and spent most of my life there. The weather is temperate but the humidity in the northwest was awful for me!

I would like to live in eastern Oregon or Washington someday. The weather isn't as temperate as the coastal areas but it's not too bad. The humidity is quite low and the cost of living is lower than the coastal cities. I felt pretty good in Spokane and in Bend but my husband and I needed to move somewhere with better job opportunities.

Good luck finding a place to move to!
 
I have visited some of the places that I am considering. My current thinking is to remove the remains carpets and repaint removes and trim that have not already been repainted in zero VOC paint. At least I will have a clear conscious if I sell. Then take the Winter to travel in my RV. I had planned on staying 5-mos at one destination but I am rethinking that idea. Instead I am thinking of traveling for 5-mos including places that I am interested in moving to and exploring them. I really feel that I cannot stay in one place too long so maybe living on the road for 5-months will satiate my desire to "not stay in one place for too long." Now I have the song, The Wanderer going through my mind. Thanks for such an awesome conversation my love!
 

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