Mold and mycotoxins

[TheBrain]

I'm moving a discussion on mold and mycotoxins that started in another thread to this new thread. The discussion began when I mentioned that I plan to get a mycotoxins test done. The test is described here: https://www.realtimelab.com/molds/

Alysson, are you referring the RealTime mycotoxin panel? I had that test done (about $700) and it was negative, even though I evidently do have a mold problem. I’ve done some reading about this and it has been suggested that people with mold sensitive HLA-DR/DQ haplotypes may not secrete mycotoxins in their urine and can thus get false negatives on the test. This issue was discussed in a Townsend Letter on Mold and Mycotoxins (http://www.townsendletter.com/July2014/mold0714_2.html). My doctor didn’t mention anything about this, and I don’t know if my results are accurate, but (like you?) I do have a genotype that is likely to hinder my ability to excrete these toxins.

LAC, yes, that's exactly the test I'm referring to. Thank you so much for sharing this information with me. Do you regret having done the test? What have you been able to do about your mold issue?

I actually have two haplotypes for mold susceptibility, so I imagine that puts me at higher risk than if I had just one.

Another question: what genotype are you referring to specifically? Are you referring to the haplotypes for mold susceptibility or something else? (I don't know the difference between those two words; maybe they are synonyms.)

I haven't read the information at that link yet, as my husband and I are about to watch a TV show. But I will dive in at my first opportunity.

[Julie G]

Alysson, I admittedly know very little about this but I'm wondering why your doc (or Dr. Bredesen?) is pushing you towards the comprehensive mycotoxin test. I just reviewed your CIRS numbers and they're not awful- some barely out-of-range. Your C4a, in particular, is normal. FWW, Dr. Schweig has indicated that elevated C4a is a tip-off towards a mold issue. Because mine is sky high, 15,723 ng/ml (reference: 0-2830,) he suspects I have a mold issue in addition to my Lyme co-infection. Unlike you, I don't have the haplotype sensitivity... I'm glad you started a new topic. I'd like to learn more about this too.

[TheBrain]

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).

[TheBrain]

Alysson, I admittedly know very little about this but I'm wondering why your doc (or Dr. Bredesen?) is pushing you towards the comprehensive mycotoxin test. I just reviewed your CIRS numbers and they're not awful- some barely out-of-range. Your C4a, in particular, is normal. FWW, Dr. Schweig has indicated that elevated C4a is a tip-off towards a mold issue. Because mine is sky high, 15,723 ng/ml (reference: 0-2830,) he suspects I have a mold issue in addition to my Lyme co-infection. Unlike you, I don't have the haplotype sensitivity... I'm glad you started a new topic. I'd like to learn more about this too.

It is Dr. Bredesen who recommended this test. In fact, in a recent phone conversation, he recommended to Dr. Dud (my former FM MD) that I have this test. Dr. Dud then included the recommendation in his patient summary, which I received about a week after my appointment. The recommendation included following up with Dr. Mary Kay Ross in Savannah (who, as you know, is a CIRS expert).

Previously, Dr. Dud questioned whether I have a mold issue. He said dealing with a mold issue is a difficult journey to take, and I want to make absolutely sure I have a mold issue before I embark on such a journey. So I wonder if Dr. Dud merely deferred to Dr. Bredesen on the matter and that was that, or if he really thought it was a great idea. I'll never know because I'll never see him again.

My MSH was quite low. Maybe something other than a mold issue caused that. In fact, Dr. Dud said that the Shoemaker folks were finding that different things (other than mold and Lyme) were causing some positive results and that they were in the process of revamping the Shoemaker protocol to clarify all of that. I suspect that's why he wasn't addressing the matter with me at all.

Thanks for telling me about how an elevated C4a is a tip-off towards a mold issue. That really makes me think something else is at play. Maybe a phone or Skype consultation with Dr. Ross is my next step. I imagine she's knows this, too.

[TheBrain]

Wow Alysson, just shocking how crappy healthcare can be sometimes. Or should I say health care providers. Did Bredesen recommend the Real Time test? Mold is tricky and not easy to test with accuracy.

LAC1965 why are you doing the ERMI instead of the HERTSMI-2? If you have a mold genotype and CIRS, you can do the cheaper version of the test which looks at the 5 toxins Shoemaker is concerned with. Look into this test and see if it works for you.

The real battle is treating the mold both in the body and in the environment. Takes time and patience for sure.

Aloha Frank

I seem to be a magnet for crappy healthcare providers. Here's one long-ago example:

When I was an infant, my mother was overwhelmed taking care of me and my older sister who was 2 years old (my father was in the military and away from home). My sister hated me, so it only made matters worse. The pediatrician told my mother to give me less attention and my sister more. "She's a baby; she won't know the difference," he said. Well, my mother ignored my needs to the point where I stopped thriving, and that has left imprints on my life in unimaginable ways. Fortunately, my mother "woke up" at some point and realized what was happening to me. She tried hard to make up for the neglect, for example, by spending a lot of time reading to me. But some damage was done. I was developmentally delayed. Doctors thought I was "mentally retarded" (I know, not a politically correct term anymore, but that's what they said). I didn't speak until I was 4, but I did come around and started kindergarten on time.

Anyway, back to the subject at hand...

Yes, it was Dr. Bredesen who recommended the test. Are you, by any chance, aware of a less expensive test for mold illness?

Thanks for mentioning the HERTSMI-2 as an alternative to the ERMI. If I decide to test my home, I'll be sure to check that out. I'm repeating myself, but I'm really hoping I don't have a mold issue. I feel like I'm dealing with enough health issues without that, though I do want to uncover and resolve the root causes of my ongoing symptoms, whatever they might be.

[SusanJ]

{{{Alysson}}}

This is off topic. But, difficult childhoods are one of the hardest things to overcome and leave so many lasting health problems. Lots of solid research on that reality.

If you haven't already read it, get Donna Jackson Nakazawa's Childhood Disrupted, which I think is a must read for anyone who had childhood trauma. She is a medical writer and the author of several books and she lays out what science knows about treating the bad health effects of bad childhoods. You can probably get it through your local library.

And here are some other articles and interviews she's done on the topic.
http://www.huffingtonpost.com/donna-jac ... 54082.html
http://us1.campaign-archive2.com/?u=de5 ... 7993776c75

I've been there and still have to wrestle some of it to the ground from time-to-time. Hang in there. The results of childhood trauma can underlie so many chronic illness, but the good news is that it be mitigated!!!

[GenePoole0304]

I'm waiting to receive a dehumidifier as the house humidity is 62%!!
The only place where there might be mold detectable is on the top of the metal molding on the wall baseboard where the dust has turned green. We have the furnace fan running continuously to circulate the air. We removed all the carpets except the spare bedroom to expose the hardwood floors. I spoke to an earn nose and throat specialist about this problem recently.

At a certain point in the humidity above 50% I think is when the spores populations increase and are likely to increase reactions. I think we get headaches from the humidity and the air conditioning does not remove enough of humidity.

It takes about 4 days for the mold to die off and any other pest as they do not have a respiratory system and rely on air humidity to survive I am referring to bed bugs and such creatures.

It sounds like there are a few quacks in this moldy business so I would be aware of what they are proposing and investigate it closely to see if it has any scientific basis.

https://www.eurekalert.org/pub_releases ... 022416.php

"The mold spores will not grow if moisture is not present. Indoor mold growth can and should be prevented or controlled by controlling oisture
indoors."
https://www.epa.gov/mold/brief-guide-mo ... -your-home

Now is there anyway to use 23andme to check that out..??

I used to get beaten up as a kid in child warfare and had one guy picked on me a lot who was stronger than me for a few years in grade school. I probably bugged them too much but who knows so watch out for my latent bug you tendencies? I remember I was screaming when I saw a cat being run over and all the gut spilled out I called 911 I must have had a trauma attack but no one else was so excited!
sorry about the rant back to bed.

[LA18]

Alysson, I hope you are able to get a definitive answer on whether or not you have a mold problem (and that it’s not an issue in your case). I think part of the reason my situation is so ambiguous is that I also have Lyme. The doctors I’ve seen (functional med and the CIRS specialist) seem to agree that the Neuroquant is a good way to assess whether one has been exposed to biotoxins from mold or from Lyme. It is the test that measures brain volume. My scan showed quite strong evidence of a mold problem, with two regions (forebrain and caudate) yielding scores (volumes) that were well out of range. What’s interesting is that there was no indication on my Neuroquant of damage from Lyme (despite a positive blood test and a very low CD57 count). I am not sure what to make of that.

My doctor listed chronic Lyme and cognitive impairment as diagnoses on my Neuroquant order. My medical record is already so tainted that it no longer matters what they put down. I was quite naïve about such matters when I started trying to figure out what was wrong with me about twenty years ago, in my early 30s (when I first started experiencing cognitive issues, no doubt from CIRS).

My understanding is that I’m rather screwed when it comes to the HLA-DR/DQ genes. I have the “dreaded” 4-3-53 haplotype, which means I’m sensitive to pretty much everything chemical, as well as to mold and Lyme. So true. I react to everything, especially formaldehyde, pesticides, exhaust, and perfumes. They affect me cognitively more than anything, and I’ve had these reactions since I was a kid. Since I have a mold susceptible haplotype on top of the 4-3-53, I think it would be unlikely for me not to have a mold problem. I know I’ve had exposures in the past on at least two occasions (two apartments a number of years ago). I just hope that’s what’s reflected on my Neuroquant.

So I need to take a binder – preferably cholestyramine -- to get this crap out of my system. I can’t tolerate that, but I have started Welchol. The problem is the Lyme and/or related infection (as well as the air quality in my home/office?). I just have a feeling that my house isn’t good, mainly because mold can be so hard to detect.

I think the issue for people like us (w/the mold susceptible HLA genes) is that we can’t get rid of the toxins once we’re exposed, so we get and stay sick, whereas others are not affected or, if they are, they recover as soon as the exposure stops. The dreaded haplotypes (Shoemaker’s label), including 4-3-53, supposedly make it really hard to recover, due to the wide array of assaults to the system. If I recall, at least one of the patients described in Dr. Bredesen’s paper on inhalational Alzheimer’s was 4-3-53.

Have you been tested for MARCoNs? I can’t remember if that’s common with mold or if it’s mainly associated with Lyme. I was positive, treated it, and it came back. So I’m treating again. I feel so much better when I’m using that nasal spray. I actually sleep. My MSH is really low, like yours (can be caused by MARCoNS), and it totally affects my ability to sleep deeply.

Also, I should mention that my c4a has never been out of the lab normal range. I tested before treating the MARCoNs and it was actually quite low. After the first round of treatment for MARCoNs, my c4a tripled, but was still “lab normal.” I’ve read that MARCoNS can suppress c4a. I bet that’s happened in my case. I should test c4a while I’m using the nasal spray to see if it’s gone up.

As far as symptoms from mold exposure, I don’t know if I have any that are specifically from that. But I can say that my bizarre, and seemingly unrelated, symptoms are all listed as consequences of CIRS. I’ve got pretty much everything that’s associated with that
condition, including a tendency to get shocks from static electricity.

Good information about the HERTSMI-2 (thanks, Frank). Sounds like that’s what I should be doing with my house and with the office.

[GenePoole0304]

For toxin removal and immune hyper sensitivity you can try increasing your tissue levels of Mg magnesium...it will take time to accomplish
Mg is involved in over 300 pathways... and there are papers on it and how it is related to Alz
its a google you pick

this needs its own thread

https://www.google.ca/search?q=magnesiu ... kQvwUIGygA

https://www.google.ca/search?q=magnesiu ... sQvwUIGygA


well got my dehumidifier and I set it for 45%. My humidity meter was of..f a problem with many of them so I bought another one.

then again.. we are adaptive organisms trading with other bacteria all the time.. its called symbiotic relationships..

https://www.eurekalert.org/pub_releases ... 100316.php

[TheBrain]

{{{Alysson}}}

This is off topic. But, difficult childhoods are one of the hardest things to overcome and leave so many lasting health problems. Lots of solid research on that reality.

If you haven't already read it, get Donna Jackson Nakazawa's Childhood Disrupted, which I think is a must read for anyone who had childhood trauma. She is a medical writer and the author of several books and she lays out what science knows about treating the bad health effects of bad childhoods. You can probably get it through your local library.

And here are some other articles and interviews she's done on the topic.
http://www.huffingtonpost.com/donna-jac ... 54082.html
http://us1.campaign-archive2.com/?u=de5 ... 7993776c75

I've been there and still have to wrestle some of it to the ground from time-to-time. Hang in there. The results of childhood trauma can underlie so many chronic illness, but the good news is that it be mitigated!!!

Susan, thank you for bringing this up and for those links, which I hadn't come across before. I'm sorry to hear you you've been there yourself with a history of childhood trauma.

I haven't yet read Childhood Disrupted, but I'm about halfway through her memoir. I keep putting off finishing it because I get caught up in other reading and research, including reading posts on the this forum. But you are now the third or fourth source, within a short period of time, that is pointing me in the direction of diving deeply into this arena.

I do have a high Adverse Childhood Events (ACE) score, and I'm at the point of understanding to some extent what happens in the body as a result of childhood trauma. But I haven't yet gotten to the details about how to mitigate it. That said, I have done a lot of inner work to release this trauma using various modalities, but much of that was very activating and definitely not about supporting my parasympathetic nervous system response.

So again, thank you. I think it's time I listen to the call!