My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby TheBrain » Fri Feb 16, 2018 2:57 pm

Thanks, Slacker! Definitely more clear. Your example pulled it all together. So I'm gathering that since I have two mold-susceptible haplotypes, I inherited one haplotype from my mother and the other haplotype from my father.

I do hope your dreaded haplotype is turned off. Maybe that's why you don't have any chemical sensitivities.
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby circular » Sat Feb 17, 2018 9:35 am

slacker perfectly describes why I haven't (yet???) paid for this genetic testing. I still may some day, but I'm not convinced it's very reliable information. There could also be additional modifying genes involved that we don't know about yet. (In this respect it's much like testing for ApoE4 ... we are looking at possible risk factors. I've been focusing more on addressing symptoms, which are known to me, and in doing so I apply much of the mold protocol (need to do more). So my money goes to treating toxin overload, whatever the source. The exception is MARCoNS, which is fairly inexpensive testing (at least for the first go 'round) that can identify pathogens, and the antibiotics they're sensitive to, with certainty and in an area that's plagued me for years, sinusitis.

This issue slacker illucidates is why even Dr. Shoemaker has moved on to RNA sequencing, to show which alleles are actually producing proteins.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby circular » Sat Feb 17, 2018 10:17 am

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.
TheBrain wrote:Taking a quick look at Dr. Shoemaker’s ranges (http://www.survivingmold.com/diagnosis/lab-tests), the only blood test result in range is MMP-9, though your TGF beta-1 is just slightly above range.

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 :oops: :cry: :roll: :x
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.
[/quote]
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 :D 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.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby slacker » Sat Feb 17, 2018 11:43 am

Some random comments from circular's most recent post and dialog with TheBrain, without going to the effort of quoting :roll:

My understanding is that MMP, TGF beta 1, and MSH are CIRS markers, and not specific to mold. They are abnormal with mold exposure, chronic tick borne disease, MARCONs, and other exposures to biotoxins.

My VCS was normal, twice, approximately one year apart. I have "age appropriate" vision with correction for both far and near at this point. My college degrees are in technical areas. No test is one hundred percent accurate.
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby TheBrain » Mon Feb 19, 2018 9:18 am

circular wrote: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.


I can see how your reaction to chemicals would be harsher with all the nasal sprays you've been using. Have you gotten your dental CT results yet? I'm also wondering if you can point to anything that happened 12 years ago that might have been a trigger (or one of multiple triggers) for your chronic illness.

I've had health issues off and on my entire life, starting with my birth. But I can easily point to two sharp declines in my health that were preceded by a huge stressor. In the one case, it was my father's death. In the other case, it was financial stress (I survived a short sale, which was a yearlong process of pure hell, packed full with anger, fear, and shame).

TheBrain wrote:Taking a quick look at Dr. Shoemaker’s ranges (http://www.survivingmold.com/diagnosis/lab-tests), the only blood test result in range is MMP-9, though your TGF beta-1 is just slightly above range.

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.


In a preceding post, Slacker answers this question quite well. I'll just add that I've read TGF beta-1 can also be elevated with autoimmune disease.

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.


It's great that you're getting your coronary calcium score. I suspect you'll get the perfect score of 0, but it's a good piece of information to know. Good luck!

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.


I understand the position of not believing anyone just because they say something. There's a lot of quackery out there. But I do find value in the recommendations from healthcare practitioners with vast clinical experience, especially those who have been sick themselves with whatever it is I'm looking into for myself (whether it's CIRS, Hashimoto's, etc.). In those cases, I find that I am more willing to trust them.

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.


It's awesome that you are so much better! I didn't realize your health had improved so significantly. And that's with the nasal infections still not completely resolved. Maybe MARCoNS is, in fact, your core issue.

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.


With Dr. Ackerley on the fence as to whether you have mold illness, I understand why you are, too.

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 :D I'm going to ask Dr. Ackerley about the Welchol. I've thought about that too.


I forgot to ask my FM practitioner about Welchol. She had a lot of information to share with me, and we ran out of time before I got to my entire list of questions. She added some supplements to my mold treatment (I'll post about that later). She's definitely not following the Shoemaker protocol, but she has put me on the protocol that she's using for her own mold illness.

One thing she said that has really helped is that I can take two activated charcoal capsules once a day (they don't need to be spread out over the day). That has made taking the charcoal much more manageable. She said I could always do more, of course.

Jill Carnahan likes to combine binders, such as activated charcoal, clay, and glucomannan. I'm considering that.

Thanks for all the discussion, because it does help me clarify my thinking and plans.


I gain clarity as well. And I must admit to being fascinated by the topic of CIRS. Of course, always take your time in responding. And sometimes, we don't need to respond at all. :o
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby circular » Mon Feb 19, 2018 9:51 am

Hi Brain!

Thanks for your reply. Many moments, hours and days I'm just like you and give lots of benefit of the doubt to practitioners who are very experienced and know what's worked in their patients. Whether they can prove it was this element or that element of the overall protocol, or every element of it, doesn't matter too much to me if there is substantial health improvement overall. So sorry if I talk out of two sides of my mouth, but I'm afraid it does have two sides that seem to operated independently of one another, sometimes even playing devil's advocate! Is that caused by mold? :lol:

Just a quick note to say that I haven't had the dental CT scan followup yet. It was originally planned for two weeks after the scan, which allowed time for an outside radiologist to look and report plus to be fit into the dentist's schedule. Then I had to reschedule twice due to changes in my husband's cataract surgeries schedule. So the CT followup is now down for 3/2.

I would say my chronic health issues started during a very stressful event at a time I'm unaware of any mold or mycotoxin exposure, and since then my life has been pretty much an avalanche of stressful events for 12 years running. Not good. During those events I can think of one certain, and another uncertain, mold exposures. Lyme not likely. During this time I've also been the caretaker many times in the hospital helping others through infections and joint replacements, which is when and where I probably began acquiring all these MRSA infections in my sinuses.

I've just read something in MedScape very suggestive, if not entirely clinically helpful, about one of my latest nasal cultures, acinetobacter baumanii:
Most Acinetobacter isolates recovered from hospitalized patients, particularly those recovered from respiratory secretions and urine, represent colonization rather than infection. Care must be exercised in determining whether the isolate is due to colonization or is truly causing infection. [Emphasis added]

I've been assuming that any positive culture in my sinuses is infection! So I need to know what if any are the clinical implications of only having colonization, and how do I know the difference? Because there are in fact other things that could account for my improved health than the MARCoNS treatment, I've just been assuming that I have all these 'infections', and that it almost goes without saying that treating them is a major player in my improvements. :?

As I think about it, infection usually involves fever, warmth at the site and similar symptoms which I don't have. I'm guessing now that simple colonization can cause unappreciated adverse health affects.

Another very odd thing is that my nasal passages are often clearer when I'm not treating one of these positive cultures. That didn't used to be the case, but the last couple rounds it has been. I wonder if I've already addressed the real troublemaker(s). Ugh, uncharted (and expensive) territory.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby TheBrain » Tue Feb 20, 2018 2:46 pm

Circular, you have very good questions about these infections. Over time, more and more health-related experts are joining the forum. Maybe we'll have an infectious disease specialist coming one of these days (not that I wish ApoE4 on anyone!).

Hmm... Is playing devil's advocate caused my mold? Another good question! I often have mixed opinions on various matters and tend to be a fence sitter. That's not a comfortable sitting position.

I collected my ERMI dust sample today and will get it in the mail tomorrow. I'll get my results via email within 5-7 days after Mycometrics receives my sample. I'm nervous but keep reminding myself that my C4a was normal three months after my husband and I moved into our current home. I'm hanging on to what Jill Carnahan has said about elevated C4a indicating current mold exposure, whereas a normal C4a with other positive biomarkers for mold illness indicating past exposure in people with mold-susceptible haplotypes.

I don't think I posted this anywhere, but in one of Dr. Carnahan's podcast interviews (maybe the one with Mike Mutzel at High Intensity Health?), she shared her own story about C4a. She was out of mold exposure and feeling much better, but her C4a was still elevated. She discovered that it caused by her paper-based patient charts that she had moved with her to her new office. Her staff scanned the patient charts, and she ditched the paper. Within a relatively short time (a few weeks or so), her C4a dropped into the normal range.
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby TheBrain » Tue May 08, 2018 12:20 pm

I recently did a retest of the urine mycotoxins test called GPL-MycoTox through Great Plains Laboratory.

First, here are my initial results from 11/23/17: Out of seven mycotoxins tested, I was high on two of them: Ochratoxin A (23.2 in a 1.2–5 range) and Verrucarin A (136 in a .5–1.2 range). All the remaining five mycotoxins were at zero. My FM practitioner referred to these levels as being extraordinarily high.

Here are my results from 4/19/17 (five months later): Ochratoxin A has dropped by half to 11.9. It's still way high but a significant drop. Verrucarin A is now at ZERO! Unfortunately, Roridin E is now coming up positive (3.44 in a .75–2.25 range). All the remaining mycotoxins are at zero.

Both Verrucarin A and Roridin E are mycotoxins (referred to as "macrocyclic trichothecenes") produced from the molds Stachybotrys, Fusarium, and Myrothecium. The ERMI on the first floor of my house showed Stachybotrys. As one mold inspector put it, the amount found was "not really high, but it's there." The ERMI doesn't test for Fusarium or Myrothecium.

But I'd think that if the Roridin E was coming from exposure in my home, it would have been positive the first time. Drugs can be contaminated with both of these mycotoxins. I did have a hysteroscopy in March and was injected with a couple different medications. Of course, I take a lot of supplements, so if drugs can be mold contaminated, I imagine supplements can be, too.

I see my FM practitioner next week. I'll be curious to learn what she thinks. I'm also awaiting the results of eight CIRS blood tests, as well as a bunch of Bredesen-recommended tests.
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby TheBrain » Tue May 15, 2018 12:21 pm

I saw my FM practitioner yesterday. She said that “clinically, you're doing well.” As I mentioned in my previous post (and will summarize here), my recent urine mycotoxins test results show significant improvement over a five-month period of detoxification. In addition, my CIRS test results were pretty good. This is the treatment protocol I've been using:

1. Activated charcoal as a binder for the past five months. I prefer Divine Bounty's Premium Coconut Activated Charcoal (but I will soon be starting compounded cholestyramine).

2. These additional supplements for the past three months: BodyBio PC (phosphatidyl choline) (I worked up to 4 horse-sized gel caps twice a day), Xymogen's S-Acetyl Glutationine (2 capsules twice a day), Xymoygen's ALAmac CR (1 tablet twice a day), and Xymogen's NeuroActives BrainSustain (4 capsules per day).

I ended up switching out the NeuroActives BrainSustain for individual supplements because I preferred my dose of N-Acetyl-L-Cysteine and my form of Coenzyme Q10 (I used ubiquinol instead of ubiquinone).

3. My far infrared sauna. I actually began using sauna therapy prior to starting the binder.

Here are my recent urine mycotoxins test results from 4/19/17: Ochratoxin A has dropped by half to 11.9 (down from 23.2 in a 1.2–5 range). Verrucarin A is now at ZERO (down from 136 in a .5–1.2 range)! Unfortunately, Roridin E is now coming up positive (3.44 in a .75–2.25 range). All the rest are at zero. My FM PA said that the Roridin is either from new exposure or (more commonly) from the binder pulling out mycotoxins from my body at a deeper level. She believes the latter is the case with me.

With CIRS testing, these results are normal (using Dr. Shoemaker’s ranges): C4a, VEGF, Osmolality, MMP 9, and VIP. My TGF beta-1 is a bit elevated (4520 in a <2380 pg/ml range), my MSH is inching up but still low (16 in a 35-81 pg/mL range), and my ADH is low (<1 in a 1.0-13.3 pg/ml range).

This past week, I had THREE days of feeling pretty darn good!

When I begin the cholestyramine, I'll stop the activated charcoal and all the other supplements noted in #2 above, except for Xymogen's S-Acetyl Glutationine (2 capsules twice a day). As I run out of the these other supplements, I won't buy more.

The only test result that concerned me was my homocysteine at 12! The highest it has run with previous testing was 5.7. My FM PA told me not to be alarmed. This is a result of the binding/detoxification process. I will be increasing my methyl folate from 400 mcg/day to 800 mcg/day. I'll also start taking Xymogen's Xcellent E (a full-spectrum vitamin E supplement) as an antioxidant. So I'm supporting my body's methylation activities and reducing oxidative stress.

My FM PA is also recommending I restart the Restore supplement to heal my leaky brain (and likely leaky gut). I also need to restart BrainHQ and focus on the activities I don't like (which are those I'm not good at). :(

We'll retest at some point. If I'm still not doing as well as I should be, we'll move on to what she calls Step 2, which involves more extensive testing. Hopefully, Step 2 won't be necessary!
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!

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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

Postby Julie G » Wed May 16, 2018 2:43 pm

Wow, Brain!!! All good and very encouraging. I'm thrilled to see that you're making progress. All too often we hear about CIRS folks stalling out. Your diligence has clearly paid off. You're an inspiration to me. Please keep us updated as you progress. -xo


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