Updated on November 7, 2014
Reader Comment
Had another comment sent in that I ended up talking on a bit to the degree that I thought it might be better placed as a blog post.
Loni’s Comment
THANKS so much for sharing all your research and experience.
You prefer the BEG spray for treatment or the ozone stuff? And about how much is the cost for treatment w/ the BEG, since its compounded, right? I thought the components of it were still antibiotics though, which has me concerned if I’m quite certain I have the mold/mycotoxins too. I’m not sure which, if MARCoNS tests positive, I should address or try first, the amphotericin B or the BEG or one of the others????
Recently discovered black mold on some underside (roof) of plywood in attic, on 3 , 4 or more sheets, though don’t see moisture. I was very sick from mold in previous home, and couldn’t figure out why I’ve been so much worse again in this house,(where I’ve been last 10 yrs) for last 6 months to a year. I think the mold exposure could explain it.
Also been diagnosed with LYME, viruses, Mycoplasma, jaw infection etc. So it’s hard to know which is causing major worsening of symptoms, or just combination of all. After watching this though, makes me think I should consider testing for the MARCoNS too, though I really have enough to deal with! 🙂
What to Focus On
The last paragraph of your comment gets to the heart of the matter. The real question in dealing with chronic illness is what to focus on. LYME, viruses, Mycoplasma, jaw infection, and so on is quite a list already. Add in Biotoxin Illness and it becomes even more overwhelming.
So here’s the deal. If you have Biotoxin Illness, this should be your main focus. Period. To understand why I feel so strongly about this requires you to get two main points.
First Main Point
The first main point is that I don’t know anyone who’s been clinically diagnosed with Biotoxin Illness (not just taking the Biotoxin Illness Test but getting confirming lab work) that recovered the bulk of their health without addressing the mold factor – regardless of what other issues they had.
Show me one person that was properly diagnosed with Biotoxin Illness that had a full recovery by just treating Lyme, co-infections, dental issues, and whatever else. I bet you can’t. (If you do find one, I’m guessing they somehow ended up in a pristine environment and didn’t have a really bad mold genotype.)
Sure you can take all sorts of herbs and medicines to suppress the immune system, drive down inflammation (antibiotics), improve thyroid function, and such (some of which have very serious and lasting side-effects). Regardless of whether you’ve got Biotoxin Illness or not, some of this will no doubt help. In fact, for those that don’t have an inability to clear Biotoxins, they may very well fully recover their health and go on their merry way.
However, if you really do have Biotoxin Illness and you simply dabble a bit here and there in treating it, well, good luck. It’s going to be a long, hard road. Personally, I suspect this happens a lot. People get diagnosed with mold, Lyme, heavy metals, parasites, and so on and lump them all together. They try a little chlorella to mop up toxins, they think their houses are OK without testing, they get their mercury fillings removed, and so on. They may even get better to varying degrees but never fully recover.
Since they “tried” to address the mold factor, they incorrectly conclude it’s not that big of a deal. Since they weren’t ever properly diagnosed with CIRS (Biotoxin Illness) let alone treating it well, they don’t test the main inflammatory markers either. As a result, they remain loaded up with toxins that are causing massive inflammation and don’t know that this is where their focus should be. So again, the take-away on the first main point is that if you’ve got Biotoxin Illness and don’t treat it very seriously, you’re always going to be “circling the drain” to one degree or another.
Second Main Point
This brings me to the second main point. The second main point is that if you do have Biotoxin Illness and make it a top priority, there are plenty of cases of people that had a whole array of diagnoses that simply fell away after treating the mold factor – in fact just about everyone with Biotoxin Illness has a list just like yours. That’s not to say that there aren’t people that have been diagnosed and had trouble following the protocol for various reasons, but if they got better it’s because they found alternative approaches while remaining focused on dealing with Biotoxins. Note: Be advised Biotoxin Illness is not simply someone that has mycotoxins in their urine, has a fungal infection, has gotten exposed to mold, etc. (see What is Biotoxin Illness). I’m talking about properly diagnosed Biotoxin Illness (see Are You Moldy).
So with my logical, mathematician’s brain (taught High School math in my youth), I look at these two main points and I conclude it makes much more sense to pursue Biotoxin Illness – assuming you really do have it. I don’t like risk. Biotoxin Illness is all the risk I need in my life. Given the low risk in the initial steps in treating Biotoxin Illness compared to loading up on an immune suppressant like “Methotrexate” or “Adalimumab”, well I’ll try the easy way first.
Sure you may have Lyme, viruses, Mycoplasma, and a jaw infection that is further bringing down your health. You may even need to address some of these issues at the same time as Biotoxin Illness to get you to a place where you can handle taking the binders, or treating MARCoNS, and so on. I’m totally cool with that. Although, as noted, I’m not going to want to take on therapies that can totally mess up my body before I see how much relief I can get clearing Biotoxins. Given that there is a proven protocol to treat Biotoxin Illness that has very little risk (at least the first few steps – more in another blog), it just makes good sense to see what you can wring out of the Biotoxin Pathway before diving into more risky and murky alternative medicine waters.
The bottom line is that it just drives me bonkers when I see well-intentioned experts of all sorts that haven’t taken the time to really study Biotoxin Illness just flippantly throw volumes of in-the-trenches data from Dr. Shoemaker that says Biotoxin Illness is very real and you can get super, major symptom relief by taking it seriously. Instead, they focus in on their areas of specialty ignoring the critical mold factor. Ten years ago when the implications of mold weren’t as well known, its understandable that not all chronic illness experts would be up to speed on mold. Today, its totally unacceptable.
OK, I’m stopping my rant now. I know I’ve made this point before, but I guess there is some part of me that needs to try to bring a bit more clarity to it because here I am writing about it again. (My apologizes to those that got it the first time and sorry Loni for using your comment as a platform to make these points. :blush1: )
Attic Mold – MARCoNS – First Steps
Getting back to Loni’s questions, the first task at hand is to really determine if you’ve got Biotoxin Illness – see Are You Moldy. If you do, then the first step to treating Biotoxin Illness is to live and work in places that are relatively mold free. This is easier said than done in many cases and it would require several blogs to cover this in detail. However, you can get a HERTSMI-2 or ERMI done by MycoMetrics and this is a good place to start. If you need help interpreting the results, go to HERTSMI-2 on Dr. Shoemaker’s website.
By the way, it sounds like Aspergillus/Pennicillium in the attic. You may have been able to hang in there (10 years) as long as you did simply due to the fact that natural convection currents in an attic are up and out – from the eaves to the peak. Look to see how your bath fans and any other fans are vented. Hopefully, they’re not just dumping into the attic or at the eaves as is common in older houses and with remodel jobs. In any case, having whole 4’x8’ sheets covered in mold is super major – assuming you’ve got Biotoxin Illness. Even if you don’t have CIRS (Biotoxin Illness), it’s no trifling matter. I want to do lengthy blogs on how to do mold remediation properly but be advised, with this level of mold I think it’s going to be tough to remediate to a level that will work for CIRS folks. Sorry :wassat:
Later on, after making sure you’re not being loaded up with toxins from your environment and have started taking Cholestyramine (CSM) to mop up toxins in your body, you can test for MARCoNS (nasty nasal bacteria). I would recommend BEG spray for MARCoNS but you’re right, it does have two antibiotics in it and for some this is a real problem – although I wouldn’t worry too much about the fact that antibiotics are derived from mold. In my estimation, having a major infection that close to your brain is a much bigger issue.
I’ve provided alternative ways to treat MARCoNS for those that just can’t handle BEG spray. From what I’ve read, these alternative approaches fit my criteria of having relatively little risk with very real upside potential. Of course, you’ll want to test before and after to confirm whatever method you used actually worked. If you do find another way like Dave Asprey, please post it here so others can benefit (although I like ozone from all my reading, I’ve never tested it for treating MARCoNS).
BEG spray is compounded and I want to say I thought it was around $200 but I could be remembering that price wrong. Once MARCoNS are gone, you can decide for yourself if you want to treat any possible nasal fungal infection using amphotericin B. In other words, BEG spray is for bacterial infections and amphotericin B is for fungal infections.
By the way, I need to mention that if you do have Lyme, then Dr. Shoemaker’s protocol says that you should be treated with antibiotics for a few weeks before starting binders like CSM – not months or years. I know there is a lot of controversy here, but if you’ve got CIRS, you’ll remain sick even if you knock out Lyme simply from the Lyme Biotoxins that remain floating around in your bloodstream. Why run the risk of seriously messing up your body with lengthy antibiotic treatment if there is a strong chance that the real issue after a short course of antibiotics is an inability to clear the leftover toxins? Again, this to be covered in another blog, but be aware that if you go on CSM and get a bad reaction after having attempted antibiotics to treat Lyme, then you need to question if you got the little Lymie buggers.
Well, this has turned into a rather lengthy reply. I apologize if I’ve come across too strongly. It’s just that in all my reading and personal experience, it’s super important to determine if you’ve got Bitoxin Illness and then take it very seriously if you do.
All the best.
hey man – I am loving your site. Such good information here and updated as well. I linked your blog on Facebook, healclick.com, and Phoenix Rising. Very very thankful and grateful for producing this information.
I am going to try to set up the box fan filter tomorrow. The fall has not been good to me. Also live around mushroom farms so not sure if that is a factor at all.
Again thanks!
Thanks for the links Chris. That’s interesting about the mushroom farm. Of course, there are all types of molds everywhere but what I’ve found from the preliminary spore trap testing I’ve done here in Wisconsin is that the mold spore count for fusarium (corn) definitely picks up as we near fall and peaks at harest time. It makes sense when you think about it. Since fusarium is not a nice mold, it’s not suprising that my health suffers in fall until the fields are clear.
Hey Greg,
thanks for your website. It’s a wealth of information for me and other people who are still suffering from unexplained symptoms western medicine doesn’t cover.
Unfortunately, I grew up in an water damaged apartment which was contaminated by black mold for the first 10 years of my life. Despite this bad environment I had a normal childhood without any health issues and developed normal. We moved to a different place, which has no obvious mold issues, and took most of our furniture with us, because my parents had no clue about toxic mold. After living here for 4 years, I developed my first symptoms (strong migraines with a loss of vision, numbness in my hands and a severe headache. These attacks occured once or twice per year). Other symptoms like a constant brain fog and digestive issues followed and got so worse that I was forced to drop out of school at age 16. I went from doctor to doctor for the following 4 years without getting answers and had a continued worsening of symptoms. My main issues are neurological these days. I have 24/7 brain fog, very poor memory, severe depression with suicidal and homicidal thoughts and a very poor brain function in general. I finally got diagnosed with Lyme Disease and the associated infections like Bartonella and Mycoplasma last year and received an antibiotic treatment. I experienced some initial improvements but reached a plateau pretty fast. My ongoing research leads me to the conclusion that Lyme is in fact a consequence of other factors like parasites, mold, emf exposure, dental issues, trauma and heavy metal toxicity. I live in Germany and haven’t found a holistic doctor here who is up to date with with all these issues. So I’m basically on my own and try to fit the different pieces of the puzzle together. I have several questions regarding mold and would love to get some light into the darkness.
If you are genetically susceptible for biotoxin illness, is it even possible to live in a contaminated environment for more than 10 years without getting sick?
How long did you live in a moldy environment before getting sick?
Thank you very much!
You’re amazing. Even with your moldy mind, you’re still quite articulate.
Being susceptible just means you could get Biotoxin Illness – see my recent Comment in Are You Moldy. I worked construction where I tore out moldy bathrooms and kitchens for decades. Of course my health declined over that time but I was able to hang in there. Like you, the freaky neurological stuff showed up last. Just remember that all those aberrant thoughts are just a reflection of a mind that is very inflamed and being re-organized in not so nice ways. What’s truly amazing is that when you take the mold factor seriously, you can recover – assuming you really do have Biotoxin Illness. We’re love and light at our core.
I’m serious about what I said in Make Mold A Top Priority.
I hadn’t heard that those that have Lyme get worse on CSM. I have Lyme and toxic mold, and have been doing some CSM, because I’m getting so much worse I’m desperate to do something. Why is it suppose to make you feel worse with LYME disease? Really had never heard that before. I’m not feeling better, but I haven’t been getting that many packets in a day, and I figured it was related to not being out of house yet, and the Lyme, etc.
I don’t remember ever reading anything on why active Lyme causes exacerbation of symptoms when starting in on CSM but Dr. Shoemaker makes mention of it as being very real. Also, some just have trouble with CSM even without active Lyme. The protocol is to knock out Lyme with a short course of antibiotics and then to take omega-3 fatty acids (fish oil) at a daily dosage of 2.4 g EPA and 1.8g DHA along with going on a no-amylose diet for at least a week prior to trying CSM again. Continue the fish oil and diet while taking CSM. For those that have trouble with CSM even with no Lyme issues, they have to micro-dose their CSM working up to the recommended 4 scoops.
If you’re in a moldy environment, this is your top priority. For me, symptoms bounced so wildly I couldn’t tell what was driving them. I had to stick to Dr. Shoemaker’s protocol and then hang in there by treating whatever symptom that was most pressing at any given time the best that I could.
I’ve got a question for you…
So I just confirmed I am of the mold sensitive genotype and have blood tests to confirm that I have (perhaps mild) mold toxicity. We re-mediated our attic 9-10 months ago of mold and did very thorough cleaning of our home afterward. At the time we only had air testing done. I would now like to get the suggested mold DNA testing done. I’m confused on whether I should do the ERMI (since we don’t have a baseline) or whether the HERTSMI 2 would be best. I’ve been living here and don’t have horrible blood markers (more toward the mild end). Any thoughts? My MSH is the worst, coming back at <8 (whatever that means– apparently the sensitivity of the test done doesn't go lower). Thank you!
ERMI if you can afford the extra roughly $100. ERMI tests for a total of 36 species of mold. You can determine your HERTSMI 2 score from ERMI. See Dr. Shoemaker’s ERMI/HERTSMI-2 FAQ
I’m not sure what was done in remediating the house the second time. However, it sounds like you had a serious infestation of mold? You can look at this Reply where I briefly discuss the steps to proper remediation. If you have Biotoxin Illness, this would also include removing the carpeting, all fabric furniture, all porous items, and washing all clothing. Eventually, I’ll write several blogs about this topic.
MSH below 8 is very significant. Normal is 35-81 pg/mL. Even if you don’t have Biotoxin Illness, you can read about the significance to low MSH in this Reply.
If I were you, I’d figure out if I’ve got Biotoxin Illness. In the blog, Are You Moldy there is information on how to do this. Depending on what labwork you’ve had done, you may be able to make an accurate diagnosis on your own. This is important as it will determine the degree that you have to be concerned about mold.
Hi Greg,
Thank you again!
I have read those posts and just skimmed them again. I really appreciate you having all of this info.
So can the ERMI still be done through Myconetrics? Or should it be done somewhere else?
Also, part of the reason I’m confused is the following (keep in mind I haven’t yet met with my practitioners to discuss my results).
My HLA test says I’m of mold sensitive genotype. We’ve had known mold in our attic, now remediated (only once btw). I have lots of symptoms and other issues (big hormonal and gut issues among others) that aren’t resolving (nobody has known why- perhaps now we do). But my other labs are a little weird.
MSH <8
C4a (although done through Labcorp which I now know is unreliable) ~475
MMP-9 330 (in the edge of high)
VIP (which should be low with MSH) is 61 (also on your edge of high).
That's all I've had done so far….oh yeah…and I fail the VCS test in one eye.
So that's why I was saying perhaps mild biotoxin illness. I don't know…maybe it can't even be confirmed by this. At this point I'm quite desperate for something to be the answer to my issues! And this makes the most sense to me.
Dr. Shoemaker has repeatedly said to use MycoMetrics.
If you have a mold susceptible haplotype and are symptomatic, this is very telling. Did you take the Biotoxin Illness Test?
You really have to be vigilant about getting the labs done right. C4a is fussy.
For a time, your body will have some success at compensating. I slowly slid into oblivion over a couple of decades. :sick: I do not recommend this route.
You’re already in a bit of trouble with low MSH. My two-cents worth is to get very serious about diagnosing Biotoxin Illness – see the list of diagnostic labs in Are You Moldy.
I’m trying not to take that route!
I understand. 🙂
I’m really not sure why that is all that posted of my comment. Sorry about that.
What I had said was that I did take the test and had symptoms from 11 of the 13 categories with highly probable mold exposure.
I’m working hard between my two practitioners (who do not specialize in mold) to get the testing done. I thought I had gotten all of the tests done that one of my practioner reccomended. But now I see I have missed a few that would be important. I got the suggestions from one practioner (not a dr) but went through my other practioner to get them ordered so that I could get them done through insurance. It has taken 2+ months to get all of the tests done that I have. We don’t have Labcorp in this state (just facilities that draw for them) and they have no idea what they’re doing. My ND does not have a Quest account. So I’m doing the best I can…..its a pretty long and frustrating experience.
Thank you for your help and all of your information!
LOL. I find that very funny about your cut off post. Maybe the Universe is trying to tell me something? After all, I do like surprises and I figured you just needed some space but it turns out to be completely different. That’s funny.
It sounds like you’re working very hard to find out what’s going on in an effort to recover your health. I’m impressed. Given your symptoms, exposure, low MSH, and borderline or inconclusive other testing, it’s looking more and more like Biotoxin Illness – although that high VIP is unexpected from what I know. If it were me, I’d see if I could get a redo on the C4a – see Are You Moldy for directions (it’s really common to get messed up labwork). Also, please be clear that the Dr. Shoemaker did way more than the 8 tests mentioned for diagnostic purposes when treating patients. He used the results to direct treatment. In a perfect world, we’d all have access to a Dr. Shoemaker.
Related to tests, in a FAQ questioning a diagnosis of Biotoxin Illness with normal C4a and high VIP, he writes “We see suppression of C4a and TGF beta-1 in many with abundant biofilm formation of multiply antibiotic resistant coag neg staphs (MARCoNS).
So I sort of do this balancing act when I write on this blog. I try to tell people as many facts as I can and then they have to decide what the best approach for them is based upon their situation. You sound like you’re very diligent so I just want to remind you that I’m just an ex-contractor saying it like it is the best he can.
Way to go getting insurance to pay. :w00t: For what it’s worth, if it does turn out to be Biotoxin Illness, it usually ends up being more of a marathon than a sprint.
Regarding whether to get an ERMI or a HERTSMI 2, like Greg mentioned, you can determine the HERTSMI score from the ERMI, because the HERSTSMI is based on 5 organisms from one section of the ERMI test. But, the organisms in the group 2 of the ERMI are also valuable – it may depend on your haplotype and degree of illness.
If you choose to remediate, the ERMI is much more useful. Someone like Greg Weatherman of aerobioLogical Solutions, Inc, can read your ERMI and usually tell where the mold issue is stemming from. He also points out that the ERMI and HERTSMI scores are not perfect indicators.
To illustrate, I’m multisusceptible and my husband is not. The home we’re now living in has an ERMI of -3.57 (in western Oregon!). This is very fortunate, Oregon is extremely wet. However, the ERMI did reveal high levels of two of the group 2 molds.
When I first came here (to the “Clean” home) to recuperate, after leaving our ERMI +17 home, I slept comfortably in the master bedroom, but reacted if I opened the closet. We couldn’t find the source of the issue, so ignored it for awhile.
After being in this home and on the Shoemaker protocol for 5 months, I suddenly could no longer sleep in our main bedroom without symptoms coming back. We ERMI’d just the master bedroom this time – to my shock, it’s score was a minus-six (-6) in that bedroom, even lower than the rest of the home. BUT the levels of two of the group 2 molds were dramatically higher than on the previous, full-house ERMI. If we had just obtained a HERTSMI, we would not have seen the group 2 mold results and would have felt quite lost! Since my husband was not having his symptoms return, we couldn’t tell if I was reacting to another form of biotoxins (i.e. there was a recent toxic algae bloom), or if I was just more sensitized to certain breeds of mold.
One thing stood out of me on the -6 ERMI, the molds that were higher than before were also molds found in high-quantities in our +17 home that we had abandoned. That led me to think I was sensitized to some of those group 2 molds. (This turned out to be correct.)
We sent the ERMI tests to Greg Weatherman, aerobiological Solutions. He pointed out that regardless of the score, the molds we had high amounts of are commonly found in crawlspaces, and can survive in low-moisture conditions. (This was the source of mold in our previous, ERMI 17 home, too.) Mold under your home can and will infiltrate into the home via air pressure, or the “stack effect”. Looking under the home – bingo!! -a patch of white mold under the vapor barrier under our master bedroom.
So, using the ERMI test and help from a specialist, we were able to narrow down the source and figure out a way to deal with it. The HERTSMI alone isn’t as useful. But, it can tell you if your home is a “leave now” situation, and if you are being exposed to the most common toxic molds.
Nicely said. These types of limitations are what I’m going to discuss in my next blog on mold testing. No one test alone is enough. The more you understand what a particular test is saying, the more you can use the data as you did with the help of Greg Weatherman to figure out what’s really going on. Awesome comment.
Kim,
That’s very interesting info. Thanks for sharing. I did do the ERMI. Our score was 1.61. For now, I do feel I’m okay at home. Not sure if be able to live in my attic, though (despite remediation). It is sealed off and with safe practices, I think I’m okay here. We run an Austin Air purifier 24/7, I use a vent fan when I cook, but crack a window at the same time so that we aren’t pulling air down from the attic due to de-pressurization, etc.
I’m wondering if anyone has taken CSM and felt mostly decent (never had herx reactions or minimally, etc). I started compounded CSM a little over a week ago. I’ve had one episode of flu-like symptoms over about 24 hours or so. Otherwise I’m doing okay. Does that seem normal? I’m just hoping and praying this is working for me! Is it possible I could need something else to mobilize the mold from my tissues?
I and three other family members have taken regular PAR CSM without incident – except for mild constipation that was addressed with extra magnesium. If you’re taking the recommended dosage of 9 grams of USP powder (each scoop contains 9 grams of which 4 grams are cholestyramine powder) mixed in water four times a day away from food and other supplements then those toxins are being cleared. It often takes a month or more to see any improvement other than better VCS test scores.
Even then, you may not get a lot of symptom relief. As a general rule, “dreaded” haplotypes have to complete more steps in the protocol before realizing significant improvement. After one month, it’s time to tackle MARCoNS. Take the MARCoNS test as soon as possible as it can take weeks to get the results back and it’d be nice to have that lined up after your first month of CSM.
Personally, I’d try mild exercise (not to the point of becoming breathless) and infrared saunas. Both of these should help mobilize toxins from fat stores – although this is not a requirement for CSM to work based upon Dr. Shoemaker’s protocol.
Thank you, Greg. I have already done the MarCons testing. I have a large amount, but only 1 resistance. Thanks for the tips and the info.
Through God’s Providence, I found your website. The information is saving my life. Having Biotoxin Illness was never on my diagnosis radar, but it is now after a home inspection Monday revealed lots of mold under the house, around the ducts, tubs and windows. I have a new respect for the health havoc caused by mold.
Sincerely,
Cheryl (ER RN), Georgia
I’m glad the website helps.
Blessings.