LAC1965 wrote:Alysson, I’m not sure about the Real Time testing, whether I regret doing it. I guess I would have rather put the money toward something else, but I probably feel that way because my results were negative. If they had been positive, and my understanding is that they can be even for those who don’t secrete toxins well, I’m sure I would be grateful to know what, specifically, I’m dealing with.
I read the information at that link (titled "Genetic Predisposition to Mold and Mycotoxin Illness"), which was very informative. Thank you for the heads-up about the possibility of a false negative with this mycotoxins test due to having (in my case) two mold susceptible haplotypes. It's unfortunate that your doctor didn't know about this before you had your test done.
Because of this possibility, I'm going to meet with the CIRS specialist before doing the test to discuss the two options recommended in the article about how to help release mycotoxins from the cells (if they're there, of course) in order to have them be measurable in the urine.
Have you had a Neuroquant MRI? If not, that might be a good way to determine if you’ve got a mold problem (but it wouldn’t tell you whether it was past or current). I had one and my insurance covered 100% of the cost.
Is this how you confirmed you have a mold problem?
I haven't had that test done. Is this the test that is used to measure the volume of various brain structures? I've been considering it, but I suspect I'd need to "put myself out there" in terms of my ApoE4 status. But how does the mold show up in the test? Does it have a particular signature (meaning physical appearance) that makes it obvious it's mold? Do you mind if I ask what diagnosis codes were used for your insurance coverage?
I have a multi-susceptibility and a mold sensitive HLA-DR/DQ haplotype (together that’s my genotype?? Never sure on the terms). I have had my house inspected and had a minor remediation (problem areas in the kitchen and bathroom). In retrospect, I wish I would have done more checking on the company. I’m not sure how thorough they were, and I’m afraid I may still have a problem somewhere in the house.
I recently ordered an ERMI test kit (measures mold DNA in dust) and will swab my house next week. This is the test recommended by Shoemaker for CIRS patients. The ERMI isn’t cheap either, but I need to find out if my house is a problem. If you’re mold sensitive, you’re supposed to have an ERMI score below 2, which, I have read, can be hard to achieve. I probably should have used the money I spent on the Real Time testing to do the ERMI, but I’ve heard that the ERMI can also be unreliable, so I just don’t know.
I'm sorry to hear you have those two haplotypes. What does the multi-susceptibility haplotype actually mean? And what makes you suspect you might still have a mold problem in your house? Do you get certain symptoms that you tie in with mold exposure? I have no clear sense of whether any symptoms I have are mold-related. I just don't know.
Please report back and let us know how the ERMI test goes.
I consulted with a CIRS/mold specialist and he emphasized the importance of assessing my home and work environments (I haven’t done anything in regard to work yet). Once that’s addressed, he suggested getting a high quality air purifier (I’ve done some research and Austin Air seems to be one of the best brands). Also, for travel and times when you can’t control your environment, he recommended the AirTamer 310, which is an ionizer you wear around your neck that cleans the air within a 3 foot window. It emits very low levels of ozone (same with the Austin Air machines), so it should be safe. But he indicated that this is only secondary to having a clean environment, and that most houses have mold somewhere. This makes me very nervous.
Well, one thing a time, right? Home first, workplace second. We can't do everything at once (though sometimes I wish we could).
Thanks for passing along the results of your research. If it turns out I do have a current mold problem, I'll buy these products.
My husband says mold is everywhere. We can't get away from it. He seems to think: then why bother doing anything about it? I need to educate myself more about this matter so I can educate him. He's on board when he understands. At this point, I don't know enough to convince myself I have a mold issue.
Hopefully if you do have a mold problem it’s from an old exposure. Have you done any testing on your house?
I haven't done any testing on my house. My husband and I bought the house in February, so if I have a mold issue, it would most likely precede living here (assuming my longterm symptoms are related to a mold issue). That's not to say there might be an issue here as well. I do plan to do testing, especially if I can get some kind of confirmation that I actually have mold illness.
My TGF-beta 1 was elevated but not crazy high (3040 pg/ml in a reference range of 344-2382), but my C4a was negative. My melanocyte stimulating hormone (MSH) was <8 pg/ml, and per the Shoemaker web site, the normal range is 35-81. Obviously, that's an issue, especially give the statement on that site that "In mold illness, MSH will be too low in over 95% of patients."
My VCS eye test showed me that I need to get a new prescription for my glasses; otherwise, my results appeared to be normal. So I'm, of course, hoping that if I have had exposure to mold, it's from the past and is out of my body now. But maybe that's wishful thinking.
I'm unaware of having mold exposure in any work environment I've been in. However, I do recall that after my husband and I bought a house in 1989, we came home from a vacation not that long afterward, and the one wall in the walk-out basement was covered in mold. We cleaned the wall, but no official remediation was done; it didn't even occur to us to do that. We learned from then on that we needed to use a dehumidifier in the basement.
I had skin prick testing in my 20s, checking to see if I was allergic to cats. I tested positive for cats but also for mold. I no longer have an issue with cats, so I hope I no longer have an issue with mold! But I always thought IgE allergies stayed with you for life (except children can evidently outgrow some IgE food allergies).
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!