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

[circular]

Hi Brain! You're correct that I haven't started VIP, since the last nasal culture showed two more infections. I since heard in a podcast with Sonia Rappaport that people who's nasal infections don't clear on the first go round typically have many different infections, so I'm not sure where this ever ends! I must be completely without a nasal biome by now given all the antibiotic and now silver sprays. It may be a reason I've become incredibly chemically sensitive. The slightest whiff of any artificial fragrance feels like a 'hit' to my sinus walls. I don't know how else to describe it, but it should be a warning for everyone spewing those toxic clouds of chemical garbage with the products they choose (sorry, it's a pulpit I find myself behind more and more). Anyway, I get the dental CT results on the 15th. The dentist was certain the sinus infections are tied to the dental area.

In August 2016 (the ranges are from the lab; Dr. Shoemakers are somewhat different):

C4a 8613 (0-2830)
MMP-9 231 (<984)
TGF beta-1 2430 (622-4625)
MSH 22 (0-40)
VEGF 23 (0-115)
ADH <.8 (0-4.7)
Osmolality 276 (275-295)
Contrast sensitivity using Dr. Shoemaker's online test was normal (after an abnormal one some time before using a different online test).

I'm somewhat skeptical of embarking on extensive mold protocols based on one-time readings, but less so in the context of chronic illness, which I've had (though much better now). I've got to think that ADH and osmolality, in particular, change frequently (?), so a one-off may not say much (?).

If the time for VIP ever does come, maybe I should retest these, so I'll ask Dr. Ackerley. I really think I need to take Dr. Sandeep Gupta's mold course to get a better grasp of all this.

Then there are my multitude of high viral titres and chronically high hs-CRP (though in the context of good CV markers). I haven't yet worked out if:

• Mold is necessarily a problem when so many viral and bacterial infections are
  The HLA genes affect viral/bacterial defense as well as mold defense
  Whether the labs above, in the theoretical absence of a mold issue, independently relate to all the viral/bacterial infections

These are the sort of thoughts the swim around my brain while I'm washing dishes and running errands

Granted, it's hard to imagine not having a mold issue in this context. I guess I'm going after the low hanging fruit in my face

Essentially, although I've had some mold exposure during the years I got so sick, my viral/bacterial load has taken front seat, and I've gotten better without doing anything specific for mold.

Meanwhile, I haven't been using binders, let alone found time to focus on it. I'm not willing to endure constipation to use a strong one (and can't think of any constipation antidote I'd be in favor of), and Dr. Ackerley says charcoal works, just more slowly. The problem is I take supplements all day long, so I can't get it distant enough from those to prevent them being carted out of my body without becoming systemic. I tried using it in the middle of the night if/when I get up, but the process woke me up too much and interfered with sleep. So I've just shelved the whole notion and hoped maybe I'm an exception to the strict protocol rule haha

Okay, those are my rambling thoughts ATM ...

[TheBrain]

Circ, I only have a minute and will respond more later. But I wanted to mention that there is an HLA-DR haplotype for MARCoNS: 11-7-52B. I wonder if you have that one. I imagine that haplotype could still create a form of CIRS, but I don’t know that with any degree of certainty. That could be a question for Dr. Ackerley.

[circular]

Thanks, I think I saw once a chart that describes the different haplotypes and their associations, but I didn't recall a MARCoNS one. That was before I knew I had it. I'll look for the chart again ... I think at Surviving Mold.

I guess at this point I won't need the HLA genes to tell me whether I have MARCoNS, but it might be interesting to see what else the genes hold in store. Dr. Ackerley said the HLA test was something I could skip in the interest of saving money, and I tend to agree. My takeaway has been that we really need RNA sequencing to tell us when various genotypes are activated, especially probably in the context of potential overlapping issues. Looking at the genetics just tells us potentials; whereas looking at genomics informs what's taking place at the transcription level. The data junkie in my loves the data, but I'm trying to be more disciplined about when the data is helpful, and when it just causes me to overthink my life, something I ultimately find to be counterproductive. I remember reading a paper a long time ago about how much decision-making is only improved with new data up to a certain point, after which decision-making becomes no more effective, if not less so. Need to find that.

There must be a paper somewhere outlining research done to identify which haplotypes associate with which illnesses. I'd like to see that.

[TheBrain]

Hi Brain! You're correct that I haven't started VIP, since the last nasal culture showed two more infections. I since heard in a podcast with Sonia Rappaport that people who's nasal infections don't clear on the first go round typically have many different infections, so I'm not sure where this ever ends! I must be completely without a nasal biome by now given all the antibiotic and now silver sprays. It may be a reason I've become incredibly chemically sensitive. The slightest whiff of any artificial fragrance feels like a 'hit' to my sinus walls. I don't know how else to describe it, but it should be a warning for everyone spewing those toxic clouds of chemical garbage with the products they choose (sorry, it's a pulpit I find myself behind more and more). Anyway, I get the dental CT results on the 15th. The dentist was certain the sinus infections are tied to the dental area.

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.

In August 2016 (the ranges are from the lab; Dr. Shoemakers are somewhat different):

C4a 8613 (0-2830)
MMP-9 231 (<984)
TGF beta-1 2430 (622-4625)
MSH 22 (0-40)
VEGF 23 (0-115)
ADH <.8 (0-4.7)
Osmolality 276 (275-295)
Contrast sensitivity using Dr. Shoemaker's online test was normal (after an abnormal one some time before using a different online test).

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.

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. My VCS was normal. I would say I could have had a career in graphic design, but I became a technical writer/editor and had fun doing page layout for computer manuals and newsletters. My mother was an artist.

Does any of that fit you?

I'm somewhat skeptical of embarking on extensive mold protocols based on one-time readings, but less so in the context of chronic illness, which I've had (though much better now). I've got to think that ADH and osmolality, in particular, change frequently (?), so a one-off may not say much (?).

If the time for VIP ever does come, maybe I should retest these, so I'll ask Dr. Ackerley. I really think I need to take Dr. Sandeep Gupta's mold course to get a better grasp of all this.

VIP will come for you! You will get past these infections! It sounds like it would be a good idea to retest when that time comes.

I just got an email from Dr. Gupta. His course is on sale now. I’ve also thought about taking it. I like the idea of having access to him for questions. I believe Slacker said that’s one of the benefits.

Then there are my multitude of high viral titres and chronically high hs-CRP (though in the context of good CV markers). I haven't yet worked out if:

• Mold is necessarily a problem when so many viral and bacterial infections are
  The HLA genes affect viral/bacterial defense as well as mold defense
  Whether the labs above, in the theoretical absence of a mold issue, independently relate to all the viral/bacterial infections

These are the sort of thoughts the swim around my brain while I'm washing dishes and running errands

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?

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 isssues 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.

Granted, it's hard to imagine not having a mold issue in this context. I guess I'm going after the low hanging fruit in my face

Essentially, although I've had some mold exposure during the years I got so sick, my viral/bacterial load has taken front seat, and I've gotten better without doing anything specific for mold.

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?

Meanwhile, I haven't been using binders, let alone found time to focus on it. I'm not willing to endure constipation to use a strong one (and can't think of any constipation antidote I'd be in favor of), and Dr. Ackerley says charcoal works, just more slowly. The problem is I take supplements all day long, so I can't get it distant enough from those to prevent them being carted out of my body without becoming systemic. I tried using it in the middle of the night if/when I get up, but the process woke me up too much and interfered with sleep. So I've just shelved the whole notion and hoped maybe I'm an exception to the strict protocol rule haha

Okay, those are my rambling thoughts ATM ...

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.

This is quite a journey, isn’t it?

[TheBrain]

Thanks, I think I saw once a chart that describes the different haplotypes and their associations, but I didn't recall a MARCoNS one. That was before I knew I had it. I'll look for the chart again ... I think at Surviving Mold.

Here’s the Surviving Mold chart (scroll down to the HLA DR section): http://www.survivingmold.com/diagnosis/lab-tests

However, I’ve come across other sources that discuss additional CIRS haplotypes. I know that SurvivingMold.com has free resources and resources one has to pay for. Maybe the paid-for resources discuss the additional haplotypes?

For example, Jill Carnahan, MD, in her podcast interview with Mike Mutzel at High Intensity Health, mentions two “dreaded” haplotypes for mold sensitivity: 11-3-53 and 4-3-52 (and she has one of them). However, neither haplotype is in Dr. Shoemaker’s list. The interview is titled #114: Jill Carnahan, MD- Mold Toxins & Mold Testing & Explained. It’s a great interview, BTW. The summary below the video and audio options is just that, a summary and not a transcript. I’m listening again because the summary misses some important details I want to capture.

I guess at this point I won't need the HLA genes to tell me whether I have MARCoNS, but it might be interesting to see what else the genes hold in store. Dr. Ackerley said the HLA test was something I could skip in the interest of saving money, and I tend to agree. My takeaway has been that we really need RNA sequencing to tell us when various genotypes are activated, especially probably in the context of potential overlapping issues. Looking at the genetics just tells us potentials; whereas looking at genomics informs what's taking place at the transcription level. The data junkie in my loves the data, but I'm trying to be more disciplined about when the data is helpful, and when it just causes me to overthink my life, something I ultimately find to be counterproductive. I remember reading a paper a long time ago about how much decision-making is only improved with new data up to a certain point, after which decision-making becomes no more effective, if not less so. Need to find that.

Thanks for mentioning the RNA sequencing. I hadn’t looked into that yet. So I’ve just done some reading about Dr. Shoemaker’s product, and it sounds awesome for CIRS. However, it currently costs $1,725. A patient’s doctor has to order it, and insurance doesn’t cover it. Here’s the ordering link for the Progene DX CIRS Assay:

https://www.survivingmold.com/treatment ... cirs-assay

Yesterday, I read that people who have had CIRS a long time might need this assay to resolve their immune dysfunction. The assay would help doctors better target treatment. (I was hoping one’s RNA sequencing could actually be tweaked to fix problems, but now I see that’s not what happens with this technology.)

I suspect I’ve had CIRS a long time, maybe going back as far as childhood but at least the past 8 years (or the past 18 years, if I trace back to the beginning of my symptoms that have worsened over time).

There must be a paper somewhere outlining research done to identify which haplotypes associate with which illnesses. I'd like to see that.

I’d like to see that as well. I’m fairly sure it would derive from Dr. Shoemaker’s careful logging of data with his (over 10,000?) CIRS patients.

[circular]

Thanks so much for the lengthy and thoughtful reply alysson. Will come back to this in time. Elder caretaker x3 right now. One thing I saw on the mold course, which I'll have to put on indefinite hold, is that it starts with "Will provide an overview of CIRS, also known as Mold Illness..." Well I do need extensive education into the science and understanding of all this, but for some reason this equation of CIRS with mold that I keep hearing is a thorn in my side. Are there not cases of CIRS that are not mold? I'm interested in where the term CIRS started? I was first acquainted with it in a context outside of mold illness (I forget where), and I've had the impression, but it may be unfair, that the mold community suddenly co-opted it. Now their language morphs around from CIRS = mold to sometimes it's something else to often when it's something else it's mold too. There is little discussion in the blogosphere -- as far as I've heard -- about the scientific research underpinning the claims. Yet I know Shoemaker is published and just haven't had time to see what's there. I'm curious whether Dr. Gupta's course gets into that or just describes the testing and treatment for mold. I get the feeling it explains it at the scientific level, but before paying for the course (some day), I like to know if published research supporting the claims is also presented. I guess I really should just start there for free at PubMed some time and then do the course afterward, depending ...

[slacker]

The Gupta course is an organized well presented overview of the Shoemaker protocol. It does include triggers other than mold for CIRS, perhaps not in as much detail. There is very little on tick borne disease. A bit on MARCONs. I don't remember very much explanation of the science. Good summary of lab tests.

I haven't been too impressed with Gupta's private Facebook page recently. I posted a general air quality HEPA filter question 2-3 weeks ago with no answer. Some member ask questions specifically about their situation, and are appropriately asked to schedule a consult.

I am not aware of other ways of interpreting the HLA DR/DQ. What is your source, TheBrain?

[circular]

Here’s the page I remember seeing about the various HLA-DR haplotypes.

[circular]

Here’s the Surviving Mold chart (scroll down to the HLA DR section): http://www.survivingmold.com/diagnosis/lab-tests

...

For example, Jill Carnahan, MD, in her podcast interview with Mike Mutzel at High Intensity Health, mentions two “dreaded” haplotypes for mold sensitivity: 11-3-53 and 4-3-52 (and she has one of them). However, neither haplotype is in Dr. Shoemaker’s list. The interview is titled #114: Jill Carnahan, MD- Mold Toxins & Mold Testing & Explained. It’s a great interview, BTW. The summary below the video and audio options is just that, a summary and not a transcript. I’m listening again because the summary misses some important details I want to capture.

Thanks for those! I'll make and effort to fit the podcast in and now I know to come back here for the HLA DR chart if I end up testing it.

Thanks for mentioning the RNA sequencing. I hadn’t looked into that yet. So I’ve just done some reading about Dr. Shoemaker’s product, and it sounds awesome for CIRS. However, it currently costs $1,725. A patient’s doctor has to order it, and insurance doesn’t cover it. Here’s the ordering link for the Progene DX CIRS Assay:

https://www.survivingmold.com/treatment ... cirs-assay

Yep, that's what I'd want, but too expensive and would need to retest. I'd like to afford to be a pioneer and grist for his research, but I'll have to emphasize meditation and other approaches for now I'd actually just love to see what the results look like and what it's like to work with them.

Yesterday, I read that people who have had CIRS a long time might need this assay to resolve their immune dysfunction. The assay would help doctors better target treatment. (I was hoping one’s RNA sequencing could actually be tweaked to fix problems, but now I see that’s not what happens with this technology.)

There's a refrain here. The HLA typing is supposed to help target treatment and now it's this that helps. That's partly because technology is advancing, but I think the problem is that it advances much faster than our ability to properly flesh the data out in research and justify some of the clinical protocols. I don't mean to be closed minded and really am not, but I'd like some statistics on how many people do the conventional mold protocol and don't get better. But I need to stop saying I want this information and that information and go find it In my current stressed out state it's much easier to just type about what I want

There must be a paper somewhere outlining research done to identify which haplotypes associate with which illnesses. I'd like to see that.

I’d like to see that as well. I’m fairly sure it would derive from Dr. Shoemaker’s careful logging of data with his (over 10,000?) CIRS patients.[/quote]
If so, and it's not published somewhere, even on an unverified webpage for starters, then we're back to Dr. Gundry's private data approach. I'm very open to their contributions and implement many of their suggestions, and no doubt will add more over time, but I just don't understand why they don't have their data in a database that can generate reports for the public. It makes me think it's all in their head, and that's why they can't put it out there beyond making general statements. But, I need to stop and see what's actually been peer reviewed and published. I think Dr. Shoemaker publishes more than Dr. Gundry in their respective topics of current interests. (Egad what a sentence ... heading to bed!)

[circular]

Here’s the Surviving Mold chart (scroll down to the HLA DR section): http://www.survivingmold.com/diagnosis/lab-tests

...

For example, Jill Carnahan, MD, in her podcast interview with Mike Mutzel at High Intensity Health, mentions two “dreaded” haplotypes for mold sensitivity: 11-3-53 and 4-3-52 (and she has one of them). However, neither haplotype is in Dr. Shoemaker’s list. The interview is titled #114: Jill Carnahan, MD- Mold Toxins & Mold Testing & Explained. It’s a great interview, BTW. The summary below the video and audio options is just that, a summary and not a transcript. I’m listening again because the summary misses some important details I want to capture.

Thanks for those! I'll make and effort to fit the podcast in and now I know to come back here for the HLA DR chart if I end up testing it.

Thanks for mentioning the RNA sequencing. I hadn’t looked into that yet. So I’ve just done some reading about Dr. Shoemaker’s product, and it sounds awesome for CIRS. However, it currently costs $1,725. A patient’s doctor has to order it, and insurance doesn’t cover it. Here’s the ordering link for the Progene DX CIRS Assay:

https://www.survivingmold.com/treatment ... cirs-assay

Yep, that's what I'd want, but too expensive and would need to retest. I'd like to afford to be a pioneer and grist for his research, but I'll have to emphasize meditation and other approaches for now I'd actually just love to see what the results look like and what it's like to work with them.

Yesterday, I read that people who have had CIRS a long time might need this assay to resolve their immune dysfunction. The assay would help doctors better target treatment. (I was hoping one’s RNA sequencing could actually be tweaked to fix problems, but now I see that’s not what happens with this technology.)

There's a refrain here. The HLA typing is supposed to help target treatment and now it's this that helps. That's partly because technology is advancing, but I think the problem is that it advances much faster than our ability to properly flesh the data out in research and justify some of the clinical protocols. I don't mean to be closed minded and really am not, but I'd like some statistics on how many people do the conventional mold protocol and don't get better. But I need to stop saying I want this information and that information and go find it In my current stressed out state it's much easier to just type about what I want

There must be a paper somewhere outlining research done to identify which haplotypes associate with which illnesses. I'd like to see that.

I’d like to see that as well. I’m fairly sure it would derive from Dr. Shoemaker’s careful logging of data with his (over 10,000?) CIRS patients.

If so, and it's not published somewhere, even on an unverified webpage for starters, then we're back to Dr. Gundry's private data approach. I'm very open to their contributions and implement many of their suggestions, and no doubt will add more over time, but I just don't understand why they don't have their data in a database that can generate reports for the public. It makes me think it's all in their head, and that's why they can't put it out there beyond making general statements. But, I need to stop and see what's actually been peer reviewed and published. I think Dr. Shoemaker publishes more than Dr. Gundry in their respective topics of current interests. (Egad what a sentence ... heading to bed!)