So I'll probably be moving in with relatives in Vegas soon (which is frankly one of the last place in the US I would want to be otherwise). It's a way to segue into the GFD so that I don't need to be as concerned about the prospect of staying alive while I do this (a truly valid concern IMO that needs to be addressed if the idea of mold avoidance is to be taken on by more of us that have nothing to lose and are 100% committed to trying it on for size). Whether or not I feel better at the house, I'll start doing weekend, then 3-day, then 4-day camping trips. Enough to see how I feel, but not long enough so I need to worried about re-attaching to the comforts of civilization. If i get enough of a sense that this is helping, then I'll go full-time radical avoidance. That's the plan anyway.
Hi Joey,
Thanks much for your post; I found it to be rather fascinating. I find myself in a situation where I often think of doing something very similar to what you describe. Then I vacillate and consider whether I should go all out and try to do extreme mold avoidance (coupled with extreme EMF/wireless radiation avoidance) here in my own home, with super-HEPA air filters, etc. (Though I may be wrong on this, I tend to believe there is probably some kind of correlation or cross-over between mold and EMFs/radiation).
Although I’m considering heading to the southwest in late winter/early spring for a few weeks to test the waters of remote mold avoidance locations, I’m leaning toward the at-home option at this time. One reason is the question of my survivability on the open road (as you referenced in your post). Another reason I’m leaning toward staying at home is because I’ve experienced some good results in the past with a couple of therapies (NAET and cranial/sacral) that were able to temporarily alleviate some of the hyper-reactivity I experience. I tend to believe it’s possible mold is just one more exposure that I might be able to address if I could just get my system/immune system to stop being so hyper-reactive to begin with. (I’ll paste my NAET an cranial/sacral stories at the end).
I recently met a man at the local health spa who moved here to Ashland from California, and has a SCIO machine. He’s offered to work on me and see what we might be able to do as far as my Lyme infections, and whatever else might be going on. His wife, who I intend to visit as well, is an acupuncturist who does a specialized kind of acupuncture that inserts about 50 needles in the head, neck and ear areas. The limited acupuncture I’ve done in the past generally showed that my best responses were when we worked with these kinds of points.
A short acupuncture story: I have a friend who began to date a mutual acquaintance (who had CFS), and went into a prolonged period of experiencing many CFS-type symptoms. I believe after many months of trying many different healing modalities, he went to see a Japanese or Korean acupuncturist (can’t remember which). Anyway, the only place they inserted the needles were in his hands, about a hundred or so if I remember correctly. My friend said that as soon as he started his first treatment, he KNEW that this is what would get him well. I believe he did about 2-3 treatments total, and was completely well.
This story, along with other things I’ve read and experienced, has led me to believe that the bio-electrical energy in the bodies/systems of PWCs is disrupted, and if this can be addressed, then all other adjunctive therapies will be far more effective. My experience with Atlas Profilax, which relieved a lot of pressure on my cranial nerves, significantly increased the nerve energy flowing out of my cranial nerves to the rest of my body. (I believe a significant head injury/whiplash in my teens originally caused a lot of this cranial nerve compression, and eventually played a big part in my own ME/CFS).
Besides doing the AP, I did two other things that I believe significantly affected the bio-electrical flows in my body. I had an asymptomatic root-canaled tooth extracted (with subsequent improvements in chronic nausea and headaches). Amalgam and metal crown removal were also big components for me, which significantly improved my brain function. All of these things and others brought me from about 4% functionality (felt barely alive) to about 25% today. And yet I suspect I’ve still not uncovered all the “structural” components of my illness.
I still tend to experience “phantom like” pains in some of my gum areas, close to where I’ve had wisdom teeth extracted. Some of Lisa’s descriptions of her experience with Rizols Gamma has me thinking much more about this recently. Do I still have undiscovered focal infections going on at old extraction sites that continue to play a big part in disrupting my health and my immune system, and making me hyper-reactive to so many things, including mold? Another part of my thinking on this results from a book I read entitled
“Diagnosis Unknown”. If you haven’t run across it, I think you might find it fascinating. The above link will take you to a post I made which has a link to the free online version of this book.
So, I’m not sure if this is all making much sense, but here’s where I’m at at this time. Before I head out into the God-Forsaken Desert (GFD), I would like to think I’ve adequately addressed (to the best of my abilities) most other issues that may be affecting me, like unknown focal infections, systemic infections such as Lyme, various viruses, 24-7 EMF/radiation exposure, etc. It seems if I don’t uncover these, then mold avoidance, which might improve my situation just as other things have, will only be part of the solution. I suppose I could do the mold avoidance in remote areas first, but this feels like I might be putting the cart before the horse. So I think in terms of doing everything I can think of before going to the desert.
As I pause here in my writing, it occurs to me that you’ve probably already done just about everything that I just mentioned above, and that you’re now ready for your foray into the wilderness. Would that be an accurate take on where you are right now? I really appreciate you taking the time to describe much of your thinking on why you’re ready for this new “adventure” (if I may call it that). It really gets my own wheels turning about what kind of plan I should make at this time. At 58, I don’t have the flexibility and resilience I once had, so I tend to think more conservatively. That said, if I had a firm belief something would help me improve significantly, or even completely regain my health, I would risk my life to do so. Nothing ventured, nothing gained. The more we have to gain, the more we have to venture I guess. Perhaps a universal law?
Again, thanks for your post. I really appreciate posts like yours, Lisa’s and others which reveal in detail some of the strategizing that you all go through. In depth and detailed strategizing is my natural orientation, though having serious cognitive dysfunction and minimal energy tends to impede this to a great degree. LOL But I do enjoy the occasional “bursts” that come along, usually from being inspired by others’ plans and stories. Wishing you the very best as you set out on this new direction of yours. I really admire your persistence in doing whatever it might take to get yourself well again.
All the Best,
Wayne
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My Experience with NAET to Help Alleviate Hyper-Reactivity
We have a friend who is an ND and I went to get some NAET treatments from her several years ago. We got together for a couple hours or so daily for about 3-4 days to get through the entire spectrum of vials she had in her kit.
I experienced a pretty dramatic improvement in my symptoms during this time, and came away from this feeling very optimistic about what it might continue to do for me. Despite learning the finer points of it, and continuing with it once we got home, I found the improvements I had experienced gradually began to fade away.
Looking back, I think this result was from not having access to the variety of vials that she had, which had some very specific vibrations. For instance, the vial I responded to most intensely was EMFs. But we weren’t able to duplicate that and others once we got back home.
I also came to believe that until some underlying core issues are addressed and resolved, it was unlikely NAET would ever have the capacity to get me over a the “CFS hump”. Because of my generally positive experience however, I'm quite interested in Dr. Rea's "dose neutralization" methods. I've not seen a detailed description of this, but wonder if it works on the same principle as NAET, and/or perhaps is more effective.
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The Following Chemical Exposure Story is a Cranial/Sacral Experience Which Instrantly Alleviated a State of Hyper-Reactivity
I’ve had extreme MCS/EI in the past but I’ve improved somewhat over time. I’ve wondered a lot as to how a person could be so sensitive to such small amounts of exposure. I had an experience about a year ago that gave me some insight (for myself).
I was in the waiting room of the chiropractor/naturopath I go to who also does cranial sacral therapy. Before I knew it, his wife was spraying some “spot remover” on the carpet in the hallway. At the same time she was musing “Hmmm, I just remembered that some people can be sensitive to things like this”.
Well, about the time I started to reel from it, the doctor came out and escorted me into his office. I told him I could still smell the chemicals and I was getting sicker by the moment and getting so dizzy I absolutely had to leave.
He persuaded me to go with him into a back room that was still clear. I was very reluctant to do so because I did not want to waste a cranial/sacral session at a time when I was feeling extremely ill. I’m glad I did however, because within seconds of him putting his hands on my head, my symptoms began to wane almost immediately. Most symptoms were gone within a minute. I could hardly believe it as an exposure such as that would normally take me at least hours to start recovering from and sometimes days to get back my equilibrium.
What I learned is that the exposures I experience seem to primarily affect me neurologically. And I’ve come to believe that so many of symptoms we with CFS/FM deal with are neurological symptoms. Dr. Jay Goldstein’s drug therapy seems to have been specifically developed to alter/modulate neurological responses.
More natural therapies such as the cranial/sacral I mentioned and some of the NAET experiences others have shared seem to also modulate neurological responses. It appears in most cases that these all seem to be palliative measures and have to be continued indefinately to sustain any improvement we may experience. My goal is to try to correct what is making me have such extreme neurological responses in the first place.
