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

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

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I recently did a relatively new urine mycotoxins test called GPL-MycoTox through Great Plains Laboratory. Given my CIRS testing thus far—which has shown low MSH and terrible genetics for mold susceptibility but not much else—my functional medicine (FM) practitioner suggested I collect my urine sample after doing three far infrared sauna sessions (sequentially, so three days in a row). She said FIR sauna would draw mycotoxins out of my liver and into my urine, if they are present.

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. I've attached my results.
Great Plains Mycotoxins test results 11-23-17.PDF
I'm feeling a mixture of relief and fear. These mycotoxins could potentially be responsible for all of my symptoms! That means my symptoms might finally be addressed! I have a hyperactive immune system with many food sensitivities (and I just became sensitive to macadamia nuts, much to my chagrin), chronic constipation, gastritis/GERD, early satiety, insomnia, mental fatigue, difficulty concentrating, and impaired memory (my memory is nothing like it used to be, but I'd probably do fine on basic testing). I have no doubt that I have some degree of mitochondrial dysfunction. I also have an odd pattern of thyroid dysfunction. I hope it's all connected.

Both types of mycotoxins could be caused by exposure to a water-damaged building, but also other things. I’ll need to get our home tested with ERMI, but hopefully it’s fine. My symptoms precede living here. But what if my home is mold contaminated? Scary (and expensive) stuff to consider.

My next appointment with my FM practitioner is on December 19. She is not Shoemaker trained, but she has helped many people with mold illness. With complicated cases, she ends up referring patients to Sonia Rapaport, MD, who is Shoemaker trained (but no longer listed on SurvivingMold.com).

I'm wondering if I should get an MRI with Neuroquant before beginning treatment.

Here's the text that accompanies each positive result (bold emphasis mine):
Ochratoxin A (OTA) is a nephrotoxic, immunotoxic, and carcinogenic mycotoxin. This chemical is produced by molds in the Aspergillus and Penicillium families. Exposure is primarily through contaminated foods such as cereals, grape juices, dairy, spices, wine, dried vine fruit, and coffee. Exposure to OTA can also come from inhalation exposure in water-damaged buildings. OTA can lead to kidney disease and adverse neurological effects. Studies have shown that OTA can lead to significant oxidative damage to multiple brain regions and is highly nephrotoxic. Dopamine levels in the brain of mice have been shown to be decreased after exposure to OTA. Some studies have hypothesized that OTA may contribute to the development of neurodegenerative diseases such as Alzheimer's and Parkinson's. Treatment should be aimed at removing the source of exposure. Agents such as oral cholestyramine, charcoal, and phenylalanine can help prevent the absorption of these toxins from food. Antioxidants such as vitamins A, E, C, NAC, rosmarinic acid, and liposomal glutathione alone or in combination have been shown to mitigate the oxidative effects of the toxin. Bentonite or zeolite clay is reported to reduce the absorption of multiple mycotoxins found in food, including OTA. Studies have also shown that OTA is present in sweat, which supports the use of sauna as a treatment to increase the excretion of OTA. (PMID 17195275, 16621780, 16293235, 27521635, 22069626, 24792326, 22253638, 16140385, 2467220, 16844142, 19148691, 22069658, 16019795, 18286403, 15781206, 11439224, 17092826, 32710148)
Verrucarin A (VRA) is a macrocyclic trichothecene mycotoxin produced from Stachybotrys, Fusarium, and Myrothecium. Trichothecenes are frequently found in buildings with water damage but can also be found in contaminated grain. VRA is a small, amphipathic molecule that can move passively across cell membranes. The primary tissues affected by VRA are intestinal and gastric mucosa, bone marrow, and spleen. VRA causes damage to human cells by inhibiting protein and DNA synthesis, disrupting mitochondrial functions, and by producing oxidative stress (due to generation of free radicals). Exposure to VRA can cause immunological problems, vomiting, skin dermatitis, and hemorrhagic lesions. Nebulized and intranasal glutathione is beneficial for those exposed to inhaled toxin. Transdermal and liposomal glutathione may also be helpful, especially in combination with sequestrants. Sequestrants bind to toxins in the GI tract making them unavailable for reabsorption. These agents are not absorbed and work best for patients with GI symptoms or those whose toxin exposure is coming from food. Activated charcoal, clay, chlorophyll, and cholestyramine have all been shown to bind mycotoxins. (PMID: 23710148, 18007011, 15342078, 19333439, 20549560, 3376149)
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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{{{Alysson,}}} I remember that strange mixture of fear and relief when learned my Babesia antibodies were sky-high explaining my positive CIRS biomarkers. I hope that you can reframe things towards a feeling of empowerment to finally have found a CAUSE for your symptoms. I applaud your persistence and feel sure that you'll turn things around. Please keep us posted on your treatment plan, etc. I would let you physician guide you re. a pre-NeuroQuant. From my perspective, having pre and post testing would be very rewarding. Out of curiosity, how much did you pay for the Great Plains mycotoxin testing?
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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Second the comment about persistence. Do hope this is the start of a new path to much healing for you!
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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This is good news alysson, in that odd way that it’s likely a major clue for you, the missing piece after years of frustrating efforts to solve issues. I remember Julie making incremental progress and then it seemed that treating Babesia was a big step forward. Likewise my unwrapping three MARCoNS/MRSA nasal infections one after another.

I’m glad I have a Neuroquant baseline. I’m likely to start VIP in January, and if I can regrow some brain areas and shrunk where there’s swelling I’ll be ecstatic ... After all these years of chronic issues I think such graphic results at the source will be very rewarding. The aberrant results were unsurprising so not really upsetting, but maybe it was all buffered by my good hippocampal score. My doc is a Shoemaker doc and they have software that helps plot the results, but it’s probably not necessary.
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

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This is also a really important example that one can have quite tame CIRS biomarkers yet still have an infection. Dr Ackerley has mentioned that she’s seen this. We need to be cognizant that in some health contexts the basic CIRS screen may net be enough. Good job alysson.
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

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Thanks Julie, Susan, and circular for your replies. One thing I can say about myself is that I persevere. I ultimately do seeing knowing at least one of my root causes (hopefully it's the only one!) as a good thing. But it seems like a potentially long road to get there, especially with having two mold-susceptible alleles.

From http://www.townsendletter.com/July2014/mold0714_2.html
Everyone has two HLA alleles, one from the father and one from the mother. Four combinations are known to be the primary mold-susceptible types (7-2/3-53, 13-6-52 A/B/C, 17-2-52A, 18-4-52A). Anderson has found that when only one of the alleles has a primary mold-susceptible pattern, there may be a milder illness presentation associated with the mold and mycotoxin issues. This does not mean that the person won't have issues with ongoing mold exposure, but the treatment itself is often easier and the immune system often responds more appropriately when the body is dealing with this layer of the illness.

In contrast, a person with two mold-susceptible alleles will generally present with a more significant illness. They will be more likely to have a higher burden of intracellular mycotoxins. Until the detoxification systems are supported and working more effectively, these toxins may remain stuck inside the cells and thus may not be present when one is attempting to identify mycotoxins in the urine. Anderson has found that the more one's genetic predisposition is toward mold-associated biotoxin illness, the more additional detoxification support will be needed; further, more aggressive antifungal therapies may be needed to treat any molds that may be colonizing the body. He has observed that the likelihood of colonization and how deeply inngrained in the system the mold issue may be can also depend on how susceptible the person is to mold-related illness based on genetic predisposition.
Julie G wrote: Out of curiosity, how much did you pay for the Great Plains mycotoxin testing?
The test cost $299, and that was with my provider's discount. Insurance doesn't cover the test, although that fact is difficult to uncover on their web site. The test is new, and their document that describes insurance options doesn't include this test as not covered. But after a phone call and email exchange, I found out from a customer service rep that insurance doesn't cover it. Hopefully, it will be covered in the future.

Patients can order the test themselves. I just tried walking through the process (up to NOT clicking Submit) to see if I could see the price. But it showed as $0.00. So I'm back to wondering if Great Plains would try to submit the bill to insurance on behalf of the patient.

I'm definitely going to talk to my FM practitioner about the MRI with Neuroquant. Maybe Sonja Rapaport would be willing to coordinate that with her because I suspect my practitioner couldn't do it (or wouldn't feel comfortable doing it) on her own.

circ, I understand why you would not be too upset about your results, given your good hippocampal score. I would be pleased to find out the same thing! I bet you're waiting with some degree of excitement to start the VIP treatment.
Last edited by TheBrain on Wed Dec 13, 2017 11:02 am, edited 1 time in total.
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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Julie and circ, did you do mold testing of your home? If so, what did you do and what did you determine? (Julie, I'm recalling that Lyme and its co-infections are your primary issues but that mold is also an issue. Please correct me if I'm wrong.)

I've found a 10-year old article (http://www.molddetectionexperts.com/newsletter0601.htm) that doesn't speak highly of the ERMI test. It points out many flaws with the studies that were done to support it. However, maybe further studies has been done on ERMI, and the findings are reassuring. I should add that the disparaging article is written by a mold inspector, so she could be inherently biased.

My husband suspects we have a mold problem in our master bedroom and bathroom and maybe in the crawl space under that area, but nowhere else. He doesn't think we even need to check anywhere else. He's saying he can tell. But from what I'm reading, you can't tell just by looking. You need to test. I'm wondering if we should go straight to a mold inspector.

For one thing, we've got some visible mold at the kitchen sink from the way the faucet was improperly installed. My husband has fixed the faucet, but the mold is still there. But underneath the surface of the sink, where the garbage disposal does its thing, is standing water. This is another error with the sink installation and harder to fix. However, that water changes often because we use the sink all the time. Still, I wonder about it.

I can see where this issue of mold testing and remeditation can cause tension between couples!
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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circular wrote:This is also a really important example that one can have quite tame CIRS biomarkers yet still have an infection. Dr Ackerley has mentioned that she’s seen this. We need to be cognizant that in some health contexts the basic CIRS screen may net be enough. Good job alysson.
Good point, circular. I recently watched the interview of Dr. Ackerley that circ recommended in another thread. The interview is titled Brain on Fire Webinar - Brain Changes in Mold Illness with Dr. Ackerley.

Dr. Ackerley said she has had patients with a TGF-beta-1 and C4a with numbers around 3,000. But based on the patients' symptoms and her instinct, she decided to go forward with treatment. She found that these numbers rose as the toxins were being excreted from the body, and then they later came down as healing progressed.

In my case, my TGF-beta-1 was around 3000, but my C4a was in the normal range.

Dr. Ackerley said that depending on patient symptoms and especially if they have tried so many things but are still not well, it's worth looking at mold illness (but I would guess she means any biotoxin illness, as the interview was specifically about mold).
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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Julie G wrote:Please keep us posted on your treatment plan, etc. I would let you physician guide you re. a pre-NeuroQuant. From my perspective, having pre and post testing would be very rewarding.
Two days ago, I had my appointment with my functional medicine practitioner, Teresa. She was shocked by my test results. She would expect someone with such high levels of mycotoxins to be much sicker than I am. She asked about my cognitive symptoms, and I told her. When I looked at my receipt as I was leaving, I saw that one of my diagnosis codes is now "cognitive impairment, mild."

Teresa said that the best binder for removing mycotoxins is cholestyramine (CSM). It is available as a prescription. However, the best form of CSM is a compounded Rx made by a pharmacy affiliated with Dr. Ritchie Shoemaker (of SurvivingMold.com). My insurance won’t cover a compounded Rx with only one active ingredient (and probably also because it’s available in regular pharmacies in a non-compounded form). The compounded Rx would cost me $300 per month, out of pocket. Also, many people can’t tolerate cholestyramine (including Teresa, who got sick from her mold-contaminated office building). So…

Instead of going that route, I’m taking Teresa’s recommendation to use a far infrared (FIR) sauna to remove the mycotoxins (and heavy metals and other nasty things stored in my body). The evening of my appointment, my husband and I purchased a High Tech Health sauna for home use. It will be delivered within the next two weeks. I’m also going to take oral glutathione ($85 per month, out of pocket) to support detoxification.

Teresa thinks the MRI with NeuroQuant provides very useful information. She said if I can find an imaging center that provides this service, she will order the test for me. I found one such place in Durham, NC. It'll be about a three-hour drive each way, so my husband will need to drive me because I don't have the stamina to drive myself. Based on what I know so far, it sounds like insurance will cover it, but I will confirm that. I recall circular having to jump through some hoops to get her MRI with NeuroQuant covered.

I do want to see where I stand with respect to what the NeuroQuant can determine, even though it scares me. But who knows? Maybe I'll be relieved.

My home has a couple of areas of mold, for example, in the master bath's sink drains and shower drain. Teresa suggested we clean these areas as best we can, clean the house thoroughly, not clean for three weeks and let the dust collect, and then do an ERMI test. If the results are fine, fantastic. If not, then we need to hire a mold inspector to find the source(s) of mold.

My husband will actually address the visible mold himself, not me. He has already removed the mold in the drains. He said they were disgusting. We are discussing remodeling the bathroom to remove the large, tiled shower. The grout is a mold magnet. The shower is beautiful, but...

I see that slacker just started a thread on Mold remediation experiences. I'll be watching that thread closely. I really, really, really hope we don't have to do mold remediation.
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Re: My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory

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circular wrote:I’m glad I have a Neuroquant baseline. I’m likely to start VIP in January, and if I can regrow some brain areas and shrunk where there’s swelling I’ll be ecstatic ... After all these years of chronic issues I think such graphic results at the source will be very rewarding. The aberrant results were unsurprising so not really upsetting, but maybe it was all buffered by my good hippocampal score. My doc is a Shoemaker doc and they have software that helps plot the results, but it’s probably not necessary.
Circ, I know you are still dealing wth nasal infections and are awaiting the results of a CT scan to see if you have dental infections that are keeping your nasal infections going. So I believe that means you haven’t yet started VIP.

But one thing I’m wondering: My understanding is that VIP is the very last step of the Shoemaker protocol and that any out-of-range biomarkers (C4a, ADH, VEGF, etc.) need to be addressed in a certain order, prior to beginning VIP. So does this mean that all your other CIRS biomarkers are fine? I can’t recall what you reported initially about your results.
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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