Finally getting back on this Brain ...
TheBrain wrote:
I’m sorry to hear that on top of everything else, you’ve now become chemically sensitive. And your poor nasal biome... I’m surprised it’s taking that long to get your CT results. The couple times I’ve had a CT, my results came back rather quickly. But I’ve never had a dental CT. Maybe it involves more analysis.
Actually I've been chemically sensitive during my entire chronic illness spell, for about the last 12 years, but I do think my physical reaction is harsher since doing all these nasal sprays for MARCoNS.
Thanks so much for looking that up. Then my rhetorical question is whether the labs are specific for mold. Couldn't a lot of different exposures cause these results? I suspect I'm sensitive to mold, but I'm interested in how to most accurately interpret and contextualize the blood work, and I don't know enough about it.
TheBrain wrote:
I just read yesterday that people with mold illness who have a normal VCS tend to be artists, interior designers, etc., basically people whose eyes might be “better” in some ways than others... Does any of that fit you?
I don't know, that just sounds like fantasy to me. Has anyone proposed a plausible mechanism? (Rhetorical question) But in case I'm wrong and this is true, my VCS (Shoemaker's) was normal and I couldn't fall more flat in the realm of visual artistic talent. I'm a boring organizer
Circular wrote:
Then there are my multitude of high viral titres and chronically high hs-CRP (though in the context of good CV markers).
In another thread recently I came to realize that my viral history may or may not be as bad as I've imagined. I wasn't paying close enough attention to the markers suggesting whether the viral activity is recent or past. I think they all suggested past, and some that I tested positive for might only be positive as a cross-reaction to another. Some doctors appear to interpret that even those conventionally seen as active in the past are actually active in the present. Here too ... where is the data (that I've not had time to look for myself either)? I think the "data" is that people with blood results like this feel bad, but that really doesn't a conclusion make.
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TheBrain wrote:
I’ve read that mold illness does not cause high hs-CRP, so something else is causing that. Your questions are good ones to ponder. Might Dr. Ackerley be able to answer them for you?
Thanks, that would be interesting. I'm planning on getting a coronary calcium score finally. My CV markers are good, but I wonder if I could still have plaque given my frequently (chronically?) high hs-CRP.
TheBrain wrote:
I will say that I’ve come across mold experts (and mold patients who have essentially become experts) saying that people with mold illness should start there if they have multiple issues going on. For example, if someone is being treated for Lyme but not getting better, there’s a good chance that mold illness is the culprit and that needs to be addressed before the Lyme will resolve.
I've heard this too. Don't know what to think. One of my problems is I just don't believe anyone at all just because they say something. Although I sometimes give people the benefit of the doubt when I trust them in some way, in my mind I really have to understand the claims well to 'believe', and I never have the time to dig like that.
TheBrain wrote:
So you’ve gotten better, but it doesn’t sound like you’ve gotten all better. It seems like something is in your way. Maybe it’s dental infections alone (not to minimize the enormity of infections in your case), but it does seem like mold is an issue for you. Didn’t your NeuroQuant results point to mold illness (atrophy in the caudate nucleus)? Or were your results overall in a gray area?
I would say I'm a lot better, some days 100%, some days 80=100%, say for example when cold and wet weather affect me. Mold may well be an issue, but at this point I can't say it's debilitating, so for now I'm going to keep working (spending) on the MARCoNS issues since I think it's easier to confirm, and since taking that further may get me all the way there.
I think Dr. Ackerley has been on the fence as to whether I have mold illness. My understanding is that she sees both the blood work and the NQ as borderline. I like that I think she's a good big picture thinker, so I've been pretty much going with it's possible and I should proceed as if true. I've been focusing mostly on the MARCoNS for now, but appreciate that it may well be true that I should up my detox for mold in case it's a complicating factor. One thing I'm not willing to spend money on at this point, given the uncertainty for me, is mold testing and remediation. My house is only 10 years old and I live in a dry climate (although I could still have mold). The only visible evidence of mold is barely a trace in one little spot in the Formica's inside edge under the kitchen sink where the sink drops in. We're planning on replacing the counter when we can, hopefully within a year or so, and that's when it'll go.
TheBrain wrote:
Along with the far infrared sauna and oral glutathione, I’m taking activated charcoal. I’ve had chronic constipation for years and use magnesium daily to manage that. To deal with the worsened constipation from the charcoal, I’m simply taking more magnesium glycinate. It’s working. I also have a problem with taking the charcoal two hours away from food, supplements, and medications. I manage to take 1-3 charcoal capsules per day, depending on how it goes. I’ve considered switching to Welchol, which can be taken with food and supplements. I see my FM practitioner on Monday and am going to ask her about it.
So glad that's working for you. I really do want to up my detox protocol. I used to take magnesium glycinate too. A problem I have with the saunas and the magnesium is they both make me too lax given my already lax connective tissues, so they're contraindicated. But, you have gotten me to put the glutathione back into my routine! I had gotten lazy about remembering to use it out of the refrigerator
I'm going to ask Dr. Ackerley about the Welchol. I've thought about that too.
Thanks for all the discussion, because it does help me clarify my thinking and plans.