120 thoughts on “MARCoNS”

1. You are not alone here hammering away although I would suggest typing with your fingers it’s easier on the keyboard 🙂

   I have an appointment with a medical practitioner today and he is going to recommend a MARCoNS test. After reading this page I’m not sure if I want it to be positive or negative.

   Thanks for the information.

   • Thanks for the nice comment. Hammer in hand, keyboard parts strewn everywhere, I knew there was something wrong 😆

     I totally relate to not being sure about test results. It’s sort of like that for all the testing I’ve had done for Biotoxin Illness. You’re glad to finally understand what’s driving symptoms, but also not so glad because it means there is no quick fix.

     • Well 4 days after my last post, back in October, I had a heart attack. 100% blockage of my lateral anterior descending artery, yikes. A stent and 36 hours later I was home almost like nothing happened except I’m scared to do anything and getting less done than I did before which is saying something. Anyway I’m writing because a local functional medicine MD that I have an appointment with in a couple of weeks said that mold toxicity could have certainly contributed to increased vascular irritability. So I’m still looking at mold as a potential problem.
       My MARCoNS test came back with only methicillin resistant Staph Coag Negative however after watching your video (thank you), I’m pretty sure the nurse who sampled me didn’t go back far enough so I’m planning on doing it again.
       So far my potential moldiness indicators are:
       MMP-9 at 1189 (normal range: 85-332 ng/mL)
       TGF-b1 at 3560 (normal range: <2380 pg/ml)
       MSH at 20 (normal range: 35-81 pg/mL)
       VIP and C4a were not elevated but I might also recheck C4a because I understand it's easy to mess up the sample.
       My house ERMI was, embarassingly, 10. I had mold inspectors over last week and from air sampling the only thing that was higher inside than outside was Alternaria although I understand comparing inside and outside at the species level is not very useful. I'm in Texas where the remediation license is separate. The remediator, recommended by the functional medicine MD, says he is well aware of Dr Shoemaker so I think I'm going to get a better understanding from him. Basically I'm trying to work out whether to fix or sell my house. Currently I'm staying at my neighbors just in case.
       Anyway, I thought you, or someone, might be interested in how this turns out. I'm going to spend some more time going through your site. Thanks.

       • Hi Trevor,
         Wow, I’m glad you’re OK. I don’t know much about heart attacks but 100% blockage of an important heart artery doesn’t sound like much fun.

         A couple of points that may be interest that came up as I read your comment.

         1. Anticardiolipins Antibodies (ACLA) associated with Biotoxin Illness can cause miscarriages, cold hands and feet (blood turns to slug), stroke, heart attack, and vascular problems.
         2. Almost always, VIP will be too low. When VIP is low, tachycardia – fast rate, palpitations – pounding, acquired pulmonary hypertension – high blood pressure in the lungs that makes the right side of the heart work harder, and low pulmonary artery systolic pressure associated with Postural Orthostatic Tachycardia Syndrome (POTS) are common. Although, it sounds like your VIP lab was OK.
         3. High MMP9 is indicative of high cytokines so I would expect C4a to be high too.
         4. Although high, 3560 for TGF-beta1 is not terrible. Shortness of breath, hair loss, nasal and vocal cord polyps, restrictive lung disease, skin keratosis, endometriosis (ovarian cysts), autoimmune illnesses, lung symptoms, neurological problems, autoimmunity, tremors, seizures, learning disabilities, multiple sclerosis (MS) and transverse myelitis (TM) are all associated with high TGF-beta1.
         5. You may want to look at this discussion about low MSH.
         6. Actually, I think comparing indoor and outdoor mold samples even at a species level can be telling. If you have one or more species that is much higher compared to others, this is an important clue. For example, if aspergillus/penicillium was only half as high indoors compared to outdoors while all the other molds from the indoor reading were 1/10th of outdoor levels, I’d start thinking about condensation issues as aspergillus/penicillium like it wet but not sopping wet. In your case, Alternaria isn’t a problematic mold.

         I’m very interested to hear about how it all turns out so keep us posted 🙂

         • Thanks for reply.
           My VIP was 35 (normal range: 23-63 pg/mL)
           After reading one of your comments (thanks) I checked and I’m pretty sure my local MD sent the C4a test to Quest and not Jewish Labs as requested. That could be another reason why my C4a result was not high.
           I probably have a couple of symptoms of TGF-b1, some hair loss and want something to blame my brain funk on.
           I read the MSH discussion. My HLA types are 4 3 53 and 17 2 52A. So multi and mold specific suseptabilities. Lucky me!
           Alternia was the only species that showed any significant difference in indoor compared to out. I understand what you are saying about the air sampling being useful. As I recall in Surviving Mold the lack is not being able compare sub-species so the varieties of say Aspergillus could be different inside compared to outside.
           I have my appointment with a local doctor, who is familiar with Dr Shoemaker and uses his and other mold detox protocols, in a couple of weeks. I’m not planning on doing anything radical with my house until I get an opinion from her. Until then I hope to be able to stay at my neighbors just in case.
           Thanks again and season’s greetings.

           • Trevor,

             Quest is the preferred lab for C4a. If you use LabCorp, you have to make sure the draw is sent to the National Jewish Medical and Research Center Laboratory in Denver -see Are You Moldy. MARCoNS can suppress C4a and TGF-beta1.

             I agree about the limitation you brought up with spore traps. It’s about gathering clues and putting them all together.

             Good luck with your local doctor and Season’s Greeting to you and yours!

2. THANKS so much for sharing all your research and experience. I couldn’t get your video w/ demo on doing swab test to work however . Might be this Kindle I’m using that it won’t open it. I don’t know, usually videos work.

   • Thanks for the heads up on the video. I’m at a loss as it’s a standard YouTube video and link. Nothing special so maybe it was just a network glitch?

     I placed the rest of your comment and my reply in the blog post Make Mold A Top Priority.

3. THANKS too from me indeed. Your experience has saved me a tremendous amount of time navigating my own treatment

   My doc (trained by Shoemaker) and I had talked ourselves out of MARCoNS testing from a lack of sinus symptoms — something I am now questioning given my lack of complete recovery from CSM and change of residence alone. Shoemaker does warn against not following the protocol to the letter, which on the one hand seems too strict given the (still) slight clinical evidence for the protocol but on the other hand seems prudent given the lack of a complete mechanistic understanding of CIRS, i.e., Shoemaker can’t exactly endorse modifications without fear that he has unbeknownst knocked out crucial aspects of the protocol or their proper sequence within it

   I’ll at least get the MARCoNS test now, esp. now that I’m experiencing palate discoloration, oral thrush, tonsil stones, post-nasal drip… mega bleh, I know. These btw flared up significantly after trying to increase my carbs in order to avoid the stress of going lower carb long-term. So hard to find the right balance of exercise (which I think benefits me) and carbs while also dealing with possible candidia/MARCoNS/gut dysbiosis, etc. Hopefully your tips re anti-fungals might allow me to get the carbs (and thus exercise) I need/want while avoiding flare-ups

   Best wishes

   PS Good tip about the dogs!

   • You can have MARCoNS without sinus symptoms.

     I don’t know anyone with a Biotoxin Illness (susceptible HLA DR and symptoms) that has gotten better without doing the first 4 steps of Dr. Shoemaker’s protocol – avoidance, CSM, MARCoNS, and fish oil. However, it is possible to skip many of the others by taking anti-inflammatory supplements and I’m an example of this. Eventually, I’ll blog about the various steps.

     Knowing your HLA DR would help in knowing if you’ve got an issue clearing toxins or if something else is going on.

     I’ve definitely had/have issues with carbs. Low MSH creates gut issues including candida.

     • Just mailed the swab today! I’ll report back on what I try and how it works if the test is positive. Lots of options — this page is unbelievably comprehensive!!

       I’m a 4-3-53 and a 15-6-51. So “Mulit-suceptable” and “Borrelia, post Lyme Syndrome.” But am I wrong in thinking that these don’t yet really indicate specific treatments outside the standard Shoemaker protocol?

       I’m pretty clueless abt the genetics stuff. I guess I should go buy a month membership to Survivingmold.com and hunt around for the correlation data b/tw genes and diagnoses/clinical outcomes on some slide of his… Would that be helpful? At any rate on the resources page of Survivingmold it says the new PAX genomics data is coming out soon! So maybe I’ll just wait. Though w/o a date on the page I have no idea how soon is soon ):

       • Very cool. It would be great to hear about what you did to clear MARCoNS especially since you’ll have before and after tests to show it worked.

         Regarding treatment for specific haplotypes, it’s really all about what labs show – the haplotype simply suggests whether treatment may be more involved requiring extra care and steps of Dr. Shoemaker’s protocol. That’s why Dr. Shoemaker took so many vials of blood – so he could tailor treatment. From what I know, he essentially did the same blood work for everyone. Having said this, the first few steps are relatively straight forward and essentially the same.

         Given both your genotypes can express as chronic Lyme, one of the differences in Step 2 (taking binders) is if you got exposed to Lyme, then you may have trouble with Cholestyramine (CSM) – actually some have trouble even without exposure. If Lyme is the issue, the protocol is to stop CSM and then 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 a week prior to reintroducing CSM – although I’d try this even if I didn’t think Lyme was an issue if I was having trouble with CSM. Even with the oil and diet, you still may need to gradually increase micro-doses up to the target – see Are You Moldy. If you’re still having trouble, Dr. Shoemaker has commented that he would sometimes prop the person up with a short course of VIP while going after MARCoNS. Eventually, I hope to blog about each of the first few steps and more in detail.

         Of course, I’m assuming that if you did have Lyme that it got knocked out with a short course of antibiotics. Dr. Shoemaker did a Western Blot when I saw him although he doesn’t trust the results for several reasons. For example, if folks with Biotoxin Illness have trouble making antibodies, then using the presence of antibodies in an Igenex or Western Blot to indicate if Lyme is present doesn’t make sense.

         The PAXgene tube has been “coming out” for quite a while although I do think a peer-reviewed article is due around the end of the year. When this test is available it will be awesome. By looking at “differential gene activation”, the Practioner will be able to know if it’s Lyme, Biotoxin Illness, ciguatera, or something else based upon each illness’s unique genetic fingerprint. Very cool. No more endless arguing about Igenex Lyme testing versus Western Blot versus clinical diagnosis, and so on ad infinitum.

         If you don’t have access to a good mold doctor, the only way out is to study and heal yourself. If I had it to do all over again, I’d start with his books or Physicians DVDs – probably Surviving Mold first. I’d skip all the stories and take notes from the very beginning. It’s all in the books and DVDs but in Dr. Shoemaker’s story telling style.

         Mold Warriors
         Surviving Mold
         Physician’s Approach to Biotoxin Illness DVDs

4. Hi Greg,

   So I’m finally making headway again with getting my test results back.

   I got my nasal culture back. It indicates I have large amounts of staph, but only one R (the rest S). I know this does not indicate MarCons, which is good. But do you know if it has any significance?

   My MSH is less than 8, so I was kind of surprised it wasn’t positive for MarCons. Do you know if there is any info on this (low MSH but not MarCons positive)?

   I also just got my ERMI back. It is 1.61 and the HERTSMI is 8. So I’m pleased about that.

   I’m still awaiting some of the other test results. Since I already know I have the mold and multi-illness susceptibility, I’m really hoping the rest of my results come back with clear biotoxin illness. I know that probably sounds crazy, but I need an answer for my ailments. I bet you can understand. Yet, since nothing else I’ve done has been effective, despite my undying hope to find the answers and have vibrant health, I am feeling very anxious and frustrated as I wait. I just hope they’re clear cut and we can move forward.

   • It can be a real slog at times. Hang in there.

     Just checking but it’s important to use the labs and codes recommended on Dr. Shoemaker’s Physician’s Order Sheet 6-20-2014. That way you’re comparing apples-to-apples. I know exactly what you mean about inept labs. As mentioned, I call ahead to let them know they will be taking an unusual blood draw and encourage them to contact the main office for details on how to do the draw correctly.

     Awesome about your ERMI. You must have done a great job on cleanup. For what it’s worth, even ERMI isn’t always right so just keep that in the back of you mind in case treating low MSH doesn’t help. What are your haplotypes by the way? I know you said they were susceptible and that you are symptomatic.

     You might be interested in the discussion I’m having with Mitch as it relates to low MSH and some of Dr. Kruse’s findings along with a few of my low MSH comments. Granted if you have susceptible mold genes, are symptomatic, have been exposed, and have some labs out of range that it’s looking like Biotoxin Illness rather than just low MSH. Still, I’m just trying to make the point that low MSH alone is no trifling matter.

     I don’t have anything on the significance of nasal staph that aren’t MARCoNS other than the general observation that low MSH can be indicative of serious health issues and in that light, it’s not surprising that bugs of all sorts will take up residence. Besides unwanted bacteria growing in noses, Dr. Brewer has shown that the fungi that move in are also a problem. I really think this is an important factor to consider – see MARCoNS.

5. My son’s MARCoNS test came back showing “large amounts” of both Acinetobacter Baumannii with only one “intermediate” antibiotic resistance and Staphylococcus Aureus with one “intermediate” and one “resistant” antibiotic resistance. Neither strain of bacteria is listed as being “Methicillin Resistant”. Although I haven’t spoken in specifics with our Doctor about this, I get the impression from him that it may not need to be treated with antibiotics. My sons VCS test was 86. It’s pointless for my son to spend $300 for a Doctor’s visit if it isn’t necessary. I’m not on a witch hunt, but on the other hand I had many Doctors tell me things over the years that were simply not true. What would you do if you were my son?

   • To begin, he does not have MARCoNS. To have MARCoNS, the report needs to be showing “Staph Cog Neg” (Coagulase Negative Staphylococci) with or without Methicillin Resistant for which two or more antibiotics are ineffective against it (either “intermediate” (I) or “resistant” (R). In fact, even if it shows “Staph Cog Neg” with only one antibiotic resistance, it’s not considered a MARCoNS – see my MARCoNS blog. Given that your son doesn’t even have “Staph Cog Neg” bacteria, he doesn’t have MARCoNS.

     Since Dr. Shoemaker’s protocol is only concerned with treating MARCoNS, I’m assuming all the other bacteria he found in the thousands of patients he treated just didn’t have statistical significance when it came to recovering from Biotoxin Illness. I Google’d both of these strains and it sounds like its not uncommon to find them in the noses of healthy folks so it’s not surprising to hear that your Doctor hinted at not needing to take any further action. Let us know what is recommended if you do decide to pursue this further with your Doctor.

     Related to what I would do if I were your son, I’d move onto the next step. I am of course assuming he’s symptomatic and has been properly diagnosed with Biotoxin Illness. Of course I’d continually be working to improve gut health starting with diet as this is so important. If I didn’t see the kind of improvement I was looking for, after a time, I may even consider a trial run of an antifungal to knock out nasal fungi per Dr. Brewer’s work as described in the update I posted to the MARCoNS blog. By the way, VCS is scored as Pass-or-Fail but it sounds like your Doctor has come up with a scoring system that I’m not familiar with.

     As far as low body temperature, I can totally relate. I always wear two pair of socks 🙂 One possibility is having Anticardiolipins Antibodies (ACA) that turns your blood into sludge. Another possibility can be found if you read over the Diet section of my Alternative Mold Therapies. In that section, I talk a bit about how depressed cortisol levels can impact the availability of the important T3 thyroid hormone – the hormone that keeps the furnace stoked. Personally, I’ve tried a bit of desiccated thyroid (Armour) but found it way too stimulating – I don’t have ACAs. Anyway, my point is that you may want to look at thyroid issues if you’re concerned but be prepared to do some serious reading as this is a big topic. Two good books are Stop the Thyroid Madness and Why Do I Still Have Thyroid Symptoms. For myself, unless lab work was way off, I would probably wait until after clearing up the mold factor to see if symptoms like always being cold got better too. To date, I haven’t seen improvement in body temperature but I’m just about to start VIP so we’ll see.

6. Hi Greg,

   I appreciate the information you’re sharing here with the world. However, despite all my searching on the web, and even on this page, I cannot find a comparable description of Marcons to match my own symptoms. By all means, I would never ask you to diagnose me, but what I have is a 24/7 pressure (I don’t know how I’m still sane) in my sinuses. I can breathe most of the time, but the pressure hasn’t gone away despite leaving a mold infested environment almost 2 years ago. Does the pressure sound like a Marcons symptom, or do you think it’s just colonized fungi?

   Also, with all this talk of CSM, no one mentions what type they’re taking. I avoid sugar now like the plague, so at one point I tried the CSM light. I had an AWFUL uticardia break out on my thigh, and am terrified to take it again. The compounded type is about $500, so that’s out of the question for now. I’m curious what CSM you’ve tried.

   Feel free to email me besides posting your response on this board. I have no one in my life going through the hell that we’ve endured, and it’d be nice to share thoughts and protocols (You can even recommend a support group if you have one in mind for mold related illness). At the moment I am rubbing coloidal silver and dmso on my pelvis in hopes of dissolving a complex ovarian cyst. It’s only been 36 hours, but it seems to be helping.

   • Hi Beth,

     Sorry to hear of your troubles. The key is to make sure you’ve got Biotoxin Illness and then step through the protocol. It takes patience and persistence and we’re often getting exposed in ways that can take time to uncover.

     Neither I nor my brother had much sinus pressure with MARCoNS. My mom complains of sinus pain more but it doesn’t sound anywhere close to what you’re experiencing. In fact, it’s not uncommon to not have any symptoms with MARCoNS. Of course I’m sure you know that leaving a moldy place will not fix your body without treatment – assuming you have Biotoxin Illness.

     If it were me, I’d really try to get the nasal swab done for MARCoNS. It’s not very expensive. The key is getting a doctors approval. Otherwise you could be spending a lot of time and effort treating a condition that you don’t have. Persoanlly, I really like snorting a tablespoon of colloidal silver up each nostril such that it runs back down out of my mouth three times daily to break up biofilms. I then do ozone nasally as described in the MARCoNS blog. To anyone reading this, please know that is a “way off the ranch” even by alternative medicine standards so proceed with caution.

     Regarding CSM, its really unfortunate that both regular and light CSM have so many additives in them. I also totally get being “terrified” about various treatments, places, etc. Please understand that when you’re really sick that its super hard to figure out what is driving a particular symptom. For example, CSM light has aspartame in it and this can cause uticardia (hives). About pricing, I’ve been quoted $220 for pure CSM powder from Hopkinton Drug not that long ago (early 2014) so I’d try other compounding pharmacies. I’ve tried CSM from PAR Pharmaceuticals and pure CSM. The PAR CSM has fructose but its at least not as bad as aspartame. Since I avoid sugar and simple carbs, I don’t have issues with the PAR CSM. So I would definitely try a different CSM but keep trying!

     By the way, what are your haplotypes? Also, high TGF-beta1 (common in Biotoxin Illness) is associated with ovarian cysts (endometriosis). For support groups, try taking a look on the Paradigm Change website with links to Mold Illness Facebook Groups and Surviving Mold Illness.

     • On the CSM – I ordered mine from Hopkinton Drug and it was $390, $415 with shipping. I just started it 1 week ago. However, since then I learned of Woodland Hills Pharmacy where they also do mail order and it runs $120 (Dec2014). Check those out. No sugar or other additives.

       • Wow Deanna! That is an amazing price for pure CSM. It looks like they offer it in convenient capsules as well. Thanks for the info.

     • Hi Greg,

       As you can see, Deanna has provided us with a wonderful option for CSM. I just hope my body doesn’t recognize it as an allergen because of the previous reaction this past summer. Ever since that happened, I continue to develop itchiness on my left hand, right forearm, and it shows up on different places on my thighs and buttocks. I believe my body recalls whatever I ate that week and associates it now as an invader.

       Even if fungi is the cause of my sinus pain, you are right about getting the Marcons test done anyway. It could be one of the reasons for my hormone disruption. And it is no coincidence that as my metabolism slows, my cyst got bigger. I am only slightly familiar with the TGF-beta1, but I’m sure it plays a role. I still don’t have insurance, so I could not get the proper testing done. Knowing my haplotype wouldn’t hurt, but it is obvious I can’t get this stuff out of my system. Ironically, my wingspan is not greater than my height.

       I am not on Facebook, but the other two support groups should be helpful.

       Thanks for the quick response,

       • Hi Beth,

         That was an awesome tip by Deanna.

         Your situation is one of the main reasons I’m trying to write this blog. I know there are folks out there that just don’t have the money to pay for all the testing and drugs so I’m trying to provide them a way out by being as precise as I can be about what this illness does to our bodies and protocols while at the same time providing low cost alternatives where possible.

         There was a young man that I ran into when I was crashing hard from Biotoxin Illness and it was like looking into a mirror image of myself regarding symptoms. We’d sit together and just talk not having a clue what was happening but it helped to have someone that I could relate to. I lost track of him over time but I remember he was close to penniless and I kept thinking to myself, how would he ever be able to get better without good information and cheap alternatives. I hope to at least help a little in this regard.

         Regarding allergic causing foods, if you do have Biotoxin Illness, then your gut will almost certainly be leaky. This causes all sorts of food allergies. It can be hard to uncover food reactions especially if you’re symptomatic from Biotoxin Illness. I talk about this a bit in the Alternative Mold Therapies. I’ve added a discussion about high histamine foods as I’ve recently discovered that I get an allergic reaction from these foods that includes hives.

         Anyway, do everything you can to make sure you avoid mold. You might want to take a look at the writings of Lisa Petrison and Erik Johnson. If you go to Lisa’s website Paradigm Change, she’s still has free download links to “Back From The Edge” and “A Beginner’s Guide to Mold Avoidance” – see the right-hand sidebar. They’re full of good information. For those with the cash, I’d recommend supporting her work by purchasing a copy from Amazon.

         By the way, my arms aren’t that long either and I’ve got a pair of “dreaded” ll-3-52b genes so that rule doesn’t always hold.

         I always try to answer questions and love it when others pitch in. I prefer to do this through the blog as it may help others too.

     • I’ve been having some mild sinus pain lately treating with a nasal anti-fungal that reminded me of this comment. I used a vibrating massager on the sides of my nose and over sinus cavities. It gave me near instant relief.

   • Beth,
     I have been on csm from. Woodland Hills Pharmacy I have no ins
     And price for pure no sugar is like $120
     You can just add the pure powder to juice after you heat up in alittle water so if doesn’t tastes bad
     I’m unsure how capsules work since I thought you had to heat up water add csm pure powder resin to it mix it gels up etc
     The biggest challenge is consistency and schedule around meds like thyroid
     It’s absorbs all so you need to take it at least 90’minutes I do 2 hours away from it
     Food is an hour etc
     My dr uses shoemaker protocol I’ve done csm a long while but only been out if my wet building moldy house for 3 months
     I’m on meds for marcons as well with an nasal aspiratir from asl pharmacy
     I did biotoxin tests as well,last March
     On my third swab to see if marcon better,but I don’t think it is yet
     They have. An eye test a good indicator as well on shoemakers site surviving mold.com
     Hope that helps

     • Debby,

       Nice comment. As you’ve said, the VCS test is a good way to monitor progress and taking CSM 2 hours away from medications can be a challenge. Now that you’re not living in a moldy building, your chances of knocking out MARCoNS are much better 🙂

       For what it’s worth, Dr. Shoemaker’s directions for CSM do not say anything about heating up water, that you can take CSM 30 minutes before food or 1 hour after, and that it can be mixed with cranberry or apple juice.

       • RE: pure CSM resin price at Woodland Hills. The above quotes are all over – they aren’t taking size/dosage into account. Woodland Hills charges (as of Jan 5, 2015) $220 for 480 gms – that’s one month worth taking the full dose of 4gm four times per day. That is equivalent to the one that Hopkinton sells at $360 for a one month supply. Incidentally, Hopkinton can no longer mail to many different states.

         Some people will react to different batches of the stuff- I had a bad reaction to one batch, but then was able to take subsequent batches. Ask for a sample to be sent to you if you have sensitivity concerns.

         The pure resin really needs to be taken in juice of some sort. I found natural apple juice worked best. If just in water, it will stick to the inside of your mouth and teeth like crazy. It should also be brushed off your teeth after taking it. I can tell when I haven’t brushed enough – my teeth and gums get sore. All that said, the stuff is a lifesaver if you are out of the exposure, first, of course.

         • Kim,

           Thanks for the information and good point about doing the math for cost comparison. Your math looks right at 4×4=16mg of pure CSM daily.

           That made me laugh when you talked about pure CSM sticking to your teeth. When I’ve taken it, I get it swirling with a “milk frother” in a big gulp of water and then chug it followed by more water. It sort of goes down like dry glue.

         • For pure resin users I heat about 1/4 of water in teacup add my teaspoon of csm to it I only do 3 times a day it works I read for my weight that’s good too
           Anyway when you add csm to hot water stir good it all dissolves it looks like glue at first yuk but it dissolves nicely in the hot water I then add that to anything and you can’t taste it doesn’t stick to teeth whala
           It also helped take away bad reflux I had after taking it
           I think I’d rather have it dissolved that way it’s just annoying you can’t just take it when your out without the hot water

           • Debby,

             Great tips. Thanks. Makes me want to mix up a batch to see what it’s like 🙂

             My notes say children between 60 pounds and 120 pounds should take 9 grams of regular CSM three times daily. Young children should take 27mg/lb. of regular CSM in each dose three times daily. Also, for those that just can’t get in the recommended dosage, CSM still works albeit slower.

     • Hi Debby,

       Thanks for the extra info. I could care less about taste as long as the product makes me feel better. How long did it take to notice a difference in your health? I am assuming you felt better if recommending it. I am just so nervous about taking anything Rx right now because I am prone to rashes and panic attacks. My lungs and sinuses have gotten worse, so I know I need to start on something, but my hormones are making me crazy.

       • Beth
         Sorry just saw this post
         I’d stick with what shoemaker does the csm powder what my dr wants but I had to get rid of marcons first
         Some days I feel great energy right away less pain other days still bad fatigue but I tend to be a slow healer I made no progress in my moldy environment it’s #1 on the list for shoemakers site
         I just moved out of that moldy house 4 months ago I am making progress but the schedule is challenging for me. Plus personal challenges in my life
         I think it’s t he way to go it has a lot of research to back it up I order it from woodland hills pure resin so it has no sugar or junk in it
         If you are doing this on your own look at the steps do the eye test marcon nose swab etc before starting csm see the list
         Hope that helps rooting for you
         I do the heated water as shoemaker says it helps with acid reflux you can get he suggested ice too but I found the ice in it made it harder to drink it up quickly and med got in ice
         I’ve been doing a year but 9 months were
         waste because I was in a very moldy environment I moved to a newer safer apt out of moldy house
         I can function much better now and my marcons is gone after 4 months yahoo
         I can walk without pain most days my lock thumbs went away etc..
         I use green tea bags mix green tea helps with constipation a side affect of csm
         Done a lot of tweaking in a year

   • I’ve been using Cholestepure by Pure Encapsulations, a natural replacement, and it has worked wonderfully in lieu of CSM….Also, Kenrico Gold 3 detox pads draw out the mold and other toxins as evidenced by me feeling improved and the mold on the pads in the a.m…..

     • Hi Joan,

       Thanks for the information. It’s always interesting to me to hear what others are trying and the success they’re having.

       I did a little digging into Cholestepure and found that it contains Phytosterols which are steroid compounds that inhibit cholesterol absorption in the intestines. Do you have any information about it’s ability to bind biotoxins? I wish I knew more about chemistry. Nonetheless, the fact that Cholestepure binds cholesterol gives additional support to the benefit you’re seeing.

       Herbal Traditions is an awesome site with great information on binders that reader Kim G. told me about that may be of interest.

7. Have you heard that it is now being suggested to clear all nasal staph infections even if they’re not resistant? I just heard today that a Shoemaker certified physician is saying this. I’m just wondering if you’ve heard this too. I have large amounts, yet only one resistance listed.

   • Deanna,

     I have a SurvivingMold Membership and wrote in specifically about this question. I was told that if it’s not MARCoNS then it does not need to be treated. I had a bit of a discussion about this with Kimberly.

     Having said this, I suppose it would depend on the strain of bacteria. I guess I would not jump on treating non-MARCoNS with antibiotics without good cause as we all know how antibiotics mess up the gut biome. Do you have a link or name of the Shoemaker physician?

     I can tell you treating nasal fungi with Sporanox and biofilm busting nasal sprays was been very helpful but that’s another subject.

     • Thank you, Greg. Good to know. It was Dr Robin Thomson in Montana. One of her patients said: “…my doctor who is certified in Shoemakers protocol says that now they require that all the staph is gone regardless if there are any resistent indiciators for meds.”

       I am very cautious to use antibiotics. Don’t remember the last time I did, especially since I already struggle with gut dysbiosis. I’ve heard the BEG is a bit safer since it’s topical, though. I did read about your challenges with it, though.

       • Hi Deanna,

         Thanks for that information. Well, SurvivingMold is taking the position that only MARCoNS need to be treated. I’m guessing this means that when other staph were treated, no statistical significance was found compared to the inflammatory markers Dr. Shoemaker measured.

         Having said this, it wouldn’t surprise me if some see real improvement in knocking out Coagulase Negative Staphylococci even if it isn’t “antibiotic resistant”. I can attest for myself that treating for nasal fungi and an infected tooth socket with ozone (I do NOT recommend this use of ozone for anyone but myself and qualified dentists) along with antifungal nasal spray with a biofilm buster has definitely helped. It wasn’t dramatic but definitely helpful.

         • Thank you!

         • This is a particularly interesting discussion because I have a ‘large amount of Coag. Neg. Staph.’ but am only resistant to one class of antibiotic (Penicillin). I think Deanna and I have been in discussion with the same patient of Dr. Thomson in Montana because I heard the same exact comment. When I approached my Shoemaker-trained doc. and questioned her more closely, she told me she found this information in Dr. Shoemaker’s publication “The 500 Most Common Q&A’s”:

           “When a patient has coag negative staph on their MARCoNS culture showing resistance to only one antibiotic class. Dr. Shoemaker will do a biofilm assay. I have not ordered one of these yet and am awaiting to hear back from Dr. Shoemaker’s office on details (where the lab is, cost, etc.) If the coag. neg. staph I’m harboring was determined (thru the biofilm assay testing) to be a biofilm former, then Dr. Shoemaker advises treating with high dose BEG spray. However, if it does not form biofilm, he does not treat.”

           My doc. later wrote me back and said that she received this email from Shoemaker’s office:

           “Dr. Shoemaker said the (biofilm assay) samples are run in lots of 96. Cost is $100 per sample. Not sure if we have that funding now.

           Thank you,
           Debbie
           Surviving Mold”

           My doc. concluded that we would, therefore, not be able to do the biofilm testing at this time. She reiterated that Dr. Shoe mentioned that it is not the amount of coag neg staph, but the actual antibiotic resistances that matter.

           If this has changed, I’d appreciate someone informing me so I can once again broach my doc. about this. To be honest, I was relieved I didn’t have to do the BEG spray but I also want to make sure that I’m treating properly.

           • That’s very useful information Nancy. Thanks.

             After reading what you and Deanna wrote, I poured over Dr. Shoemaker’s FAQs. With the information you two have given along with the FAQs, I now believe the real issue isn’t necessarily Coagulase Negative Staphylococci that are resistant to two or more antibiotics (MARCoNS) but it’s as Nancy’s Doctor is saying. The real concern is Coagulase Negative Staphylococci that are biofilms formers. In fact, Dr. Shoemaker frequently refers to the staph in question in relation to forming a biofilm and does say that if there is no biofilm then the Coagulase Negative Staphylococci does not need to be treated. Also, we know a big component of BEG spray is EDTA for biofilm busting. Given all this, it now seems that testing for antibiotic resistance was just an easy way to determine if the Coagulase Negative Staphylococci was a biofilm former – it’s the biofilms that makes it possible for the staph to resist antibiotics.

             Additionally, I would not have understood the vague FAQ that referenced testing Coagulase Negative Staphylococci for a biofilm without Nancy’s input. Once again, Nancy’s Doctor sounds like she’s got a good take on this. The lab that does “biofilm production assays” of nasal cultures looking for biofilm forming coagulase negative staph (commensal organism – bacteria existing in nasal passages and benefiting from the host) does them in lots of 96 so the ordering Physician has to have a significant CIRS patient base.

             Furthermore, I found an FAQ that said that the amount (small, medium, large) of Coagulase Negative Staphylococci listed for MARCoNS wasn’t relevant as methodology for estimating amounts is less than perfect. It’s all about Coagulase Negative Staphylococci with a protective biofilm.

             So the question becomes what to do if you’ve got Coagulase Negative Staphylococci but they’re not MARCoNS. First, for those with other types of staph, this does not appear to be an issue in relation to Biotoxin Illness. Although, from the benefit I’ve seen in treating MARCoNS and then nasal fungi, I would definitely do some digging and determine if the staph was related to health issues and if it was, how best to treat it – BEG spray may not be the best choice.

             For those like Nancy with Coagulase Negative Staphylococci but only one or no antibiotic resistances, here are a few other related FAQ points. If a HERX occurs with BEG spray, it is usually in the first week of treatment of MARCoNS and particularly with Methicillin Resistant MARCoNS. An “intensification” of symptoms can also happen as a result of MMP9 that is rather high. In both cases, VCS will fall in column E followed by column D. As such, it’s important to take a baseline VCS before starting BEG treatment so you can watch for a fall in VCS. If symptoms worsen and a fall in VCS occurs, then Dr. Shoemaker recommends stopping BEG spray and checking MMP9 – an inflammatory marker. If MMP9 is going higher, then it is suggestive of Lyme. Non-Lymies will have stable MMP9.

             Putting together some pieces then, I would say one way to try to discern if the non-MARCoNS Coagulase Negative Staphylococci are biofilm formers would be to do a trial of BEG spray and watch for a HERX. If you do HERX, this is suggestive of biofilm forming staph. On the other hand, if you don’t HERX, you really can’t conclude much. Also, for people like Deanna that see a worsening of VCS rather than the expected improvement within the first month of starting CSM (not a drop from taking BEG spray), does this suggest the presence of biofilm Coagulase Negative Staphylococci? It makes me wonder.

             The take-away for me is that if I had Coagulase Negative Staphylococci regardless of the amount, Methicillin Resistance, or the number of antibiotics the staph was resistant to, I’d most likely take BEG spray or try treating with one of the alternative approaches. We know MARCoNS bring down MSH and MSH is so critical. Regardless of how you treat, you can always do another swab to confirm whatever method you chose was effective. This has been a very informative discussion. Thanks.

         • Thank you so much for this research and discussion!!

8. My sister has suffered sinus infections for years and her nasal test just came back and showed she had two strains of fungal infection and no marcons (we tested both NARS and fungal). Does that mean she will need to do a month of cholestryamine before she treats the fungal infection or can she bypass cholestryamine?

   • Kimberly,

     I’m assuming you used Diagnostic Laboratory Medicine in Bedford Massachusetts for MARCoNS. How was the fungal sample taken and what lab did you use?

     You can check out most of what I know about fungal infections on the MARCoNS page. To my knowledge, cholestrymine (CSM) was not used by Dr. Brewer in treating fungal colonies. If your sister doesn’t have Biotoxin Illness, I don’t see that CSM is required. However, most of us know that knocking out bacteria and fungi can produce higher levels of toxins that can cause a HERX of some sort. As such, it may make sense to take some high quality charcoal and clay to help mop up any toxins that get dumped into the gut by the liver.

     I would be very interested to hear directly from someone that was treated by Dr. Brewer to learn more about his approach.

     • I have only done shoemakers protocol and did have marcons been on csm a long time but it seems to me and I’m no dr
       Why not use csm since it binds the mold toxins and bypass the die off symptoms you get using char coal or other things marcons or not it is still mold or bacteria or toxin you trying to get rid of
       Just my thoughts it’s what I would do
       One other thing my dr now that marcons is gone is still doing some meds through nose pathway
       To get rid of mold before we do step after Marcon on shoemaker protocol
       It’s a good way to kill stuff off via the nasal pathway he suspects I may have other mold in there now that Marcon is gone ..
       Hope that helps someone

9. Thanks for sharing your experience! I had one course of BEG spray that was ineffective so after retesting they changed it to BER spray (rifampicin replacing gentamicin). This time I’m also breathing ozone bubbled through olive oil, ozone into my ears as well as colloidal silver via nebulizer twice daily for half an hour for each treatment. I’ve had an ear candling session which cleared my sinuses for a couple of days but so far nothing has removed the obstructed feeling in my left ear. I suspect a fungal growth in my left rust avian tube. I lived in a mouldy environment for 14 years and have had sinus and ear blocking for at least 10!years so I reckon it’s pretty well entrenched, whether it is fungus or just a biofilm community supporting gram neg staph. I also had strep throat as a teenager and into my early 20s. No wonder my gut is a mess. It was very helpful for me to read your blog, thanks again.

   • That’s interesting about BER spray. As we know, Rifampicin is what Dr. Shoemaker used to give orally in combination with BEG spray before they figured out BEG spray alone was just as effective. Makes sense to try.

     I like your approach of trying adjuncts like ozone and colloidal silver in combination with a core protocol. I tried ozonating my ear canals too. Of course, this has to be done carefully to prevent damage to the ear drum. After a time, my ears got super itchy. They say it’s from the toxins that are oozing out. I’m not so sure but the itching was so bad I couldn’t sleep even after trying salves like Witch Hazel. I gave it up with no other noticeable effects. Not saying it won’t help you; just relaying my experience.

     Did you catch in the MARCoNS article about how persistent mold exposure and dogs can inhibit clearing of MARCoNS? Personally, I didn’t notice all that much when I cleared MARCoNS related to the constant post nasal drip I have. Lately, I’ve been using anti-fungals with EDTA for biofilms and this has helped my overall health. This was surprising to me as I’d used ozone, iodine, and the like for some time. My point is that my experience seems to support Dr. Brewer’s position that fungal colonies can get well entrenched and be problematic.

     • Yes Greg, my ears itch too, but I found bubbling the ozone through before it hits my ears stopped that. Ozone on its own is very drying which I think can be a problem. Dont know if that’s the problem for you, but it helps me. Great that the anti fungal treatment is helping more. I’ll make sure they culture for that next time I get the MARCoNs retested

       • Cool tip. Thanks.

       • The comment about ears itching makes me want to start another thread. That is so miserable!

         I don’t have MARCoNS, never did, thankfully. I have been getting itching in my ears since being on the Protocol and out of mold… Ugh.

         I think I’ve finally figured out a pattern. My ears and throat both get itchy, and we were able to fix it with two things. First, I have an air filter going in the bedroom all day that make as much of a “cleanspace” as possible. That helps. But the ear itching came back in intervals, so, we removed all the plants from our house. They are outside now. I noticed immediate relief…but then it came back less severe in little bouts. Then it got a bit worse, with other symptoms kicking in and I figured out two more factors.

         At that point, I suspected we weren’t ozoning enough in our house (we’re on a crawlspace in a frame built house, and moldy air from under the crawlspace leaks into the home a little, ozoning has kept that manageable for now). Being more regular on the ozone did help…and then I still had slight itching come back periodically, and finally I was able to see what seems to be the last layer – it was on days that I wasn’t consistent with my CSM or other binders. Now it’s been fine, and I’ve learned that I definitely can’t reduce CSM yet. I’m on month 10, was told I’ll need at very least a year, possibly two, and then go to a 2x per day maintenance dose. Hopefully I’ll be able to find a non-prescription bile acid binder that works by then!

         Also, 2 or 3% food grade hydrogen peroxide in the ears, let to bubble as long as you can stand the sound and tickles, stops a lot of itching, too. But only put liquids in your ears if you know your eardrum is intact, NOT perforated.

         Anyone out there have any other ear-itching remedies?

         • I have itching ears too. Using warmed olive oil and hydrogen peroxide helped me too.

         • Kim,
           Did you see my comments about creating negative pressure in moldy crawlspaces as a way of limiting infiltration?

10. I’m in an odd situation in that I believe I may have been exposed to black mold, but I’m not entirely sure. Shoemaker seems to believe this would mean I am more likely to have MARCoNS.

    Recently, I’ve acquired nasal cellulitis, and am currently taking antibiotics to treat it. Bactrim in case of MRSA and something in case it’s Strep.

    Is MARCoNS the same as MRSA? I don’t think the doctor realizes it’s possibly MARCoNS, and Bactrim would fight against MRSA, not necessarly MARCoNS (don’t really know).

    I know your methodology probably doesn’t penetrate into skin, the area of concern for me, but will it help eradicate MRSA in the nose?

    • From what I can tell in looking at WikiPedia, “nasal cellulitis” is a bacterial skin infection. It sounds like yours is maybe inside the nasal cavity as opposed to being on the surface of the nose.

      Methicillin-resistant Staphylococcus aureus (MRSA) is one of the 40 species of known Staphylococcus bacteria that is methicillin resistant. It is resistant to many antibiotics. It’s ability to be antibiotic resistant comes from it’s ability to form biofilms.

      Multiple Antibiotic Resistant Coagulase Negative Staphylococci (MARCoNS) appears to be any Staphylococci bacteria species that is antibiotic resistant and does not produce coagulase – a protein enzyme. Like MRSA, MARCoNS use biofilms to protect themselves from antibiotics. Since there are species of MRSA that are both coagulase positive and coagulase negative, this means that the Staphylococcus aureus that does not produce coagulase is also a MARCoNS – regardless of whether it is methicillin resistant or not.

      BEG spray has been quite effective at knocking out MARCoNS so if you’re dealing with coagulase negative MRSA, then I’d say BEG spray may be a good choice. In any event, you’ll want to be using a biofilm buster to allow whatever antibiotic you use to get at the bacteria.

      If you’ve been exposed to higher levels of indoor molds and have the types of symptoms mentioned in the Are You Moldy article, then you may want to consider finding a qualified mold doctor and get tests like HLA DR, MMP9, VEGF, C3a, C4a, TGF-beta1, MSH, VIP and the like to confirm a diagnosis of Chronic Inflammatory Response Syndrome (CIRS).

      • Would it not be wise to get the nasal swab done for Marcons
        At the right lab too?

        I always had a swab done first to go confirm I had it along with the mold CIRS markers in mold illness

        After a month of medicine for Marcons, we did follow up nasal swab tests until it was gone. I ended up going 3-4 swabs he changed tweaked meds until it was gone

        Now we are working
        On mold

        PS make sure you’re not still being exposed to that mold or nothing will work !

11. My 23 year old son, was just treated for a staph infection without the blood work before or after, it was just a nasal culture and then he was prescribed gentimiacin nasal spray, he completed the 14 days, and then his health started going down hill, aches pain, weakness, sweats, he is so sick has not been able to get out of bed. I voiced my concerns to our Dr., we only see every 3 months, and he didn’t seem concerned that it could be the effect of this med or die off? My son never complains and he is miserable and has been since finishing the spray a week ago. Tell me we aren’t crazy????

    • You’re not crazy.

      I can say for myself that treating with BEG spray (Bactroban 0.2%, EDTA 1%, and Gentamicin 3%) definitely gave me severe flu-like symptoms after about 6 weeks. I treated with wild oregano oil and probiotics.

      It looks like Gentamicin nasal spray can be absorbed systemically. As such, it knocks out bacteria in the nose, gut, and elsewhere. Anyway, it’s just a thought. Perhaps it’s time to find a different doctor?

      • Thanks Greg, I was so disappointed to have my Dr say, that it was not the medicine causing my sons symptoms, when plainly he was going downhill from day one! Finding another Dr is on our to do list. Your web page is so full of wonderful help, I just wish I was smart enough to understand it all! THANK U

        • Lisa,
          Don’t sell yourself short. You knew something wasn’t right with your son and now you’re doing some digging. It’s persistence that matters.

          • I echo what Greg said above – trust in yourself and keep trying. This illness might take you through a few doctors, and that’s normal, though hard. Even my naturopath thought I was a hypochondriac for many years, until my health finally declined enough that no one could deny there was a problem. You must believe in yourself (and your son) and know that you are the only constant observer of you. YOU are the expert on yourself. Please hang in there, both you and your son. *HUG*

          • Thank you Kim G. your kind words couldn’t have come at a better time! We have been on a protocol for over a year, but he has taken a turn for the worse, i think he’s just trying to work, and starting to feel a bit better, and now a fast down hill slide. Thanks Kim! Blessings – lisa

          • I’m not sure if others have experienced this, but I, too, will have periods where I start to feel better and take a quick backward slide. I’m not sure what it’s all about. Do you think in trying to start working he is going into environments that are re-exposing him? I think that was what was happening to me. It was happening before I identified the mold issue for sure.

          • Deanna, thanks for your comment, I too have wondered that? He has been on a protocol for 8 months, and thought he was doing a lot better, this spiral down hill has been very frightening, and re exposure was the first thing i thought of?
            If it hadn’t been the fact this all began the week he started a nasal spray for marcons called “Gentimicin” from Woodland Hills Pharmacy. He progressively went down hill and finally ended in a burn and crash. Hard to really determine if it was a hit (but yes my first thought exactly) and love to have friendly minds like yours join along side of the sick ones to help us think through processes. I appreciate you, and Greg too for this wonderful extensive information that he has gathered and shared. Happy spring everyone! Lisa

          • RE: downhill slides, yes, my husband and I and his Mom have all had that. With my husband and I, we’ve been able to trace it to exposure. In our cases, we work from home, and don’t have to go many places. So, a very controlled environment. That makes it easier to track down, and thus far we have been able to.

            With his mom, she’s in another State, so we used a mold specialist to help figure it out. She went downhill when she turned on her heating system – which it turns out has mold in it, It has air conditioning attached, and that’s a recipe for mold.

            My point is, don’t give up when you feel you’re doing the backwards slide. Dr. Ackerley calls the healing process “trending upward”. She says that’s what we’re aiming for, like in the stock market. So, it’s not a smooth uphill, but over all, it should be generally improving.

            Good luck, and be well!

        • I appreciate Greg and this ability to connect here as well, Lisa! Best wishes to you and your son! Kim, I wish I was experiencing more of that “upward trend”, but I do think that’s a great term to use not just for CIRS, but other chronic illnesses and autoimmune diseases, etc. as well.

    • Oh so sorry
      I had marcons for a year. It was not until I got out of moldy environment I got rid if it.
      My doctor I see monthly who is very knowledgeable with it we follow shoemaker a few tweaks he never used gentamicin except before diagnosis of Lyme disease with Bartonella in pill form .that was before we knew about mold illness.
      We used mycropricin with chelating solution 2 a day in a nasal machine not spray Then changed after some months to a med starts with v can’t remember name that did trick

      A good dr can help you with die off symtoms
      But need to look at whole picture environment
      CSM,inflamation ,and what causing this so severe.
      I would not wait 3 months to sort through that .

      You need to do the Visual Eye contrast test
      And nasal swab test for marcons with the right lab I think it’s diagnostics ?
      it’s usually way more than 14 days for med A month at a time then tweak meds and another month etc. then you do the nose swab again and go from there .
      I personally would not go to a mold doctor and not see him monthly ,three months is way too long in my opinion

      Test suggestion from website to see what’s going and the eye test monthly till gone then you go to next step
      Did he go on csm and find he has mold toxicty biotoxin disease or CIRS inflamation ?
      It all goes together in steps in a certain order
      I say think of looking at shoemakers site look at steps find a doctor that knows what he’s doing with the marcons staph mold etc..my dr knew what meds to change out on marcons when it wasn’t working and used this cool nasal touch nose machine from what was then ASL lab . Important your not being exposed to mold or it will get in way of healing and cause problems
      I did not get rid of it till I was out of moldy house ,now next 6 months we are working on getting mold out of me I have the genetic marker that holds onto mold .
      Wishing you sucess knowledge is power take a stand to fight it’s important and you will get there!
      Praying you get the right help .
      And who listens to you

12. Hi Greg, If I can’t tolerate the Gentamicin in the BEG spray can they formulate the spray with another one of the Susceptible antibiotics in the report? Why do they typically use Gentamicin in the nasal spray since it has known Ototoxicity (toxic to the ear)? Spraying something like that into our sinuses (that can get into the ear canal) does not seem to make sense. My tests have staph coag negative in large amounts, R to 4 of the antibiotics in the list. Could they make the BE spray with Oxacillin or Clindamycin which my staph is not R or I to.? The antibiotics have little or no ototoxicity risks. Even cefazolin would be a better alternative, although there are still some reports with ototoxicty with this antibiotic.

    • Cool question and good information on antibiotics. Geez, maybe that’s why my tinnitus got temporarily worse when I was using BEG spray. Anyway, what you’re suggesting makes sense to me although I have not read anything specific on this subject other than these helpful comments by Maree and Nancy.

      • hi Greg, i called Hopkinton and they do make the spray w/ a variety of other antibiotics, so i just picked a few non-R and non-I antibiotics in my report and suggested those to him. They do make a BEC spray w/ Clindamycin, which is not ototoxic. So if your Staph is not R or I to Clindamycin this is another good option. Nancy has suggested just the BE might work as well. I will ask my dr and let the group know.

13. D, my hubby has MARCoNS and will need to treat for it. Like you, he had major concerns over potential hearing issues with regard to the Gentamicin. After expressing my hubby’s concerns to our doc., she initially suggested using a BEC spray, swapping out Clindamycin for Gentamicin. She subsequently discussed this with some other mold practitioners and directly asked Dr. Shoemaker if he has used this (BEC). He said he has not. Another clinician has used it and cleared the MARCoNS with it. However, Dr. Shoemaker again suggested just dropping the Gentamicin from the BEG spray and treating with BE spray, since he has seen this work. So, at this point, that is what we are planning on my hubby using (BE only spray) when he gets to that point in his treatment. If the MARCoNS doesn’t clear with this treatment (upon re-testing), then he’ll have to consider treating with BEC.

    Just thought I’d put this out there so that you can check with your practitioner.

    • hi Nancy, thanks for your response. I just called Hopkinton (prior to reading your great response), and they do make the spray w/ a variety of other antibiotics, one of which is clindamycin, which i am not Resistant to or Intermediate to. I did the research beforehand and suggested this one to him, because it has very little ototoxicty. So it looks like we are in synch. I will also mention trying just the BE spray as well to my dr.
      I did try the BEG spray and by the second day head was pounding and humming was in the ears especially while laying down. I stopped it immediately after that.

      • Glad to hear this, D. I am particularly skittish around antibiotics of all kinds as I have severe MCS. So, I really feel you have to trust your gut and go with the lesser of all evils when it comes to meds.

14. I’m interested in your comment about MARCoNS possibly infecting the jaw and dental cavities. I believe an infected root canal caused a nonstop sinus infection that hasn’t gone away despite countless drugs and two sinus surgeries, but I can’t convince the numerous doctors and dentists to agree that an infection in that area could infect the sinuses (and I’ve been to some of the best).

    After having the root canal 3 1/2 years ago, I got sick right away and the infection spread and I lost two front teeth and a big chunk of bone. I’ve since had a cavitation surgery and a cavitat scan but no infection was found on x-rays. I’m worried the cavity could be harboring something like mold or MARCoNs; if it is, I’m worried I’m going to be stuck being sick. Apparently if the bone doesn’t heal over, it can harbor stuff–the immune system can’t clean it out because there’s no blood flow.

    I think all the many nasal cultures I’ve had done were useless as nothing fungal ever showed up. However, I discovered my work building was moldy two years ago (I no longer work there) and it recently became obvious my sinuses had been colonized with mold after I asked my doctor to prescribe antifungal rinses and sprays 4 months ago (Flutaconazole and Amphoceritan B) and mold started coming out of my nose, probably a type of Aspergillus that was found in my work building. I don’t think I can have MARCoNs in my nose as I’ve been treated with antibacterial/antifungal/EDTA nasal sprays and rinses that contained all the ingredients of the BEG spray except Gentamicin. I haven’t done the Shoemaker protocol but am thinking about getting some of the tests done and possibly seeing one of the certified doctors. I’ve been on CSM and other binders for a couple of years and have already spent a lot of money.

    I was wondering if you had any suggestions.

    • Kate,

      I’m so sorry to hear about your troubles. I can relate.

      An upper first molar of mine had a root canal. We X-rayed it, did a cavitat scan, and ART. It all came back inconclusive/contradictory. Finally, after reading Dr. Cook’s book along with the constant aching convinced me that I should have the tooth extracted. It was infected.

      As you know, the roots of the upper molars and bicuspids can project into the maxillary sinus. If a hole into the sinuses that results after extraction isn’t treated properly, bacterium from the mouth enters the sinuses and wreaks havoc.

      After a botched extraction, I had the socket re-opened by another dentist because I could feel it wasn’t right. Sure enough, there was a large unhealed cavitation. It still doesn’t feel quite right, but it’s much better. Certainly having CIRS makes it harder for my body to heal. Here are some ideas.

      1. Starve the bad bacteria and fungi by going on an antifungal diet – see Dave Asprey’s Bulletproof Diet or Doug Kaufmann’s Phase One Diet.

      2. Consider ozone injections. Medical ozone has been used over 50 years in Europe. These can be placed into the tissue around the roots of teeth and into the sinuses. They also make a specialized hollow drill bit whereby the bit is sent into necrotic bone, the drill is removed, and ozone is injected with a syringe that attaches to the embedded bit – sounds bad but was no problem when I had it done.

      In the book, Principles and Application of Ozone Therapy, Dr. Frank Shallenberger writes about sinus injections. He says, “These injections will routinely heal even the most resistant sinus cases, often with only one or two treatments. Using a 5cc syringe, draw up 1-2cc of the procaine mixture described above in the peri-apical injection technique. Then fill the remainder of the syringe with 2-4cc of ozone at 10 gamma. Attach a 30ga, ½” needle, and inject the entire contents of the syringe above each canine tooth. The injection is placed ½” deep, just superficial to bone. This should be done with the patient lying on his back. That way the procaine will be injected first, followed by the ozone. Repeat the procedure above the opposite canine tooth. Patients will often note that the gas distributes all over their face, around their eyes, and even over the top of their head. Do not be concerned. This is normal, and completely safe. The gas will disperse within 30-60 minutes. The patient will almost always notice an immediate improvement in his symptoms. Only one treatment is needed for acute cases. Up to 5-6 treatments, given once every 1-3 weeks may be needed in chronic cases.”

      3. Treatments into the sinuses and mouth can also help healing. Breathing ozone that is first bubbled through extra virgin olive oil is an option. Recently, I’ve been trying an herbal product called Biocidin. So far, I’m impressed. It can be administered as a nasal spray. The material I read and the videos I watched convinced me it was worth a try. I may do a later post on this remedy.

      4. In 1999, a Mayo study concluded that nearly all chronic sinus infections were fungal -not bacterial or viral. Using a xylitol spray like Xlear several times daily can be helpful knocking out biofilms and treating sinus infections. You may also want to consider the use of antifungals as discussed in MARCoNS.

      5. Finally, I personally like doing facial massages. I think it helps move treatments more deeply into bone and tissue along with engaging my mind and Spirit in the healing process.

      • Thanks. I will try your suggestions. I recently did some nasal ozone treatments but they didn’t help. I will look into getting a shot.

15. Dear Greg,
    First I’d like to thank you so much for your website. I happened on it while searching for more info on Marcons. I was diagnosed with CIRS about a year ago and have been in treatment with Dr. Shoemaker’s protocol. Thought I was ready to take the final step to VIP but found out I have marcons again. I’m a dog trainer by profession and need to get information on how dogs get and transfer marcons to humans. I now know I can test and get my own dogs treated but need to know how to continue working safely. Any information you have would be greatly appreciated. As you know this illness is very tricky to navigate and the information is difficult to assimilate.

    • That’s an interesting question. Dr. Shoemaker says dogs are carriers and can be a source of re-infection. However, low MSH and continued exposure to mold can make a person more susceptible to MARCoNS. In Dr. Shoemaker’s FAQs, he mentions that it was owners that allowed their dog onto the bed that had problems. I mention this to try and give you a sense for the level of contact required. Related to mold, if you’re not seeing a flare in inflammatory markers and you’ve had a HERTSMI-2 or ERMI done, then I doubt that mold exposure is the issue. On the other hand, low MSH doesn’t correct until VIP is taken. If I remember correctly, those with a multi-susceptible genotype tend to get re-infected more easily. It could very well be due to low MSH as I’m sure you’re being as careful as you can be when handling dogs.

      It’s great you tested for MARCoNS before starting VIP. As I’m sure you know, VCS should be normal, MARCoNS should be cleared, and ERMI should be 2 or less before starting VIP. In addition, Dr. Shoemaker would measure MSH, VIP, C4a, MMP9, TGF beta-1, VEGF, testosterone, estradiol, lipase and others before the first dose of VIP. After taking the first dose in the office, TGF beta-1, C4a, MMP-9, and lipase are re-checked. Any rise of TGF beta-1 greater or equal to 5,000 usually means that there is ongoing exposure to mold. Although rare (4 out of 600), lipase can rise indicating increased pancreatic secretions and possible injury to the pancreas. Personally, I don’t know that all those labs absolutely have to be drawn but that’s another topic.

      • Thank you for your reply. I’m going to continue researching this as I wonder how a dog being on the bed transfer marcons. Is it in the fur or is the dog licking the person etc? How can I keep my dogs from getting infected if they are not or treated? Interesting to know both for myself and my clients as we know we’re not the only bio-toxin people on the planet. I really think I was re-exposed in a meeting room that had water damage during our last big storm. I wasn’t informed. I’m now not using any meeting room in my work. Previous I had a clean nasal culture and passed the vcs test for the first time and the part of the home we’re living in was clean.

        • Given that MARCoNS are bacteria harbored in the nose, I would assume that when dogs sneeze, lick, and smell that bacteria are put in the environment. Given that folks touch their faces over a dozen times each hour, it’s not surprising that these bacteria find their way to noses of people. Maybe you could wear gloves when handling the dogs? Anyway, let us know what you find out!

          • Here is a blurb from Dr. Shoemaker’s publication “500 Questions & Answers” regarding this topic:

            “Note there are two main reservoirs of MARCoNS in the environment. One is the interior environment of water-damaged buildings and the other is deep nasal spaces in dogs. There may be others that I don’t know about. For people who don’t have close contact with dogs, presence of this organism in a dog’s nose is not significant. For people with close contact with dogs who have the same organism found in their noses as what dogs have, there are several issues. The first is hand washing; this simple procedure is the most critical element in prevention of droplet transmission of infectious diseases. Just like hand washing prevents diarrhea in day care children and transmission of infections in the hospitals, it also helps prevent transmission of this organism from a dog to people. Pet the dog, wash your hands. Scratch the dog’s tummy and ears, wash your hands. I am reminded of the line from the famous cartoon strip Peanuts when Lucy says, “Ooh, I have been licked by a dog.” This form of affection, like nuzzling your dog’s face, isn’t a good idea if you are low MSH and have harbored a MARCoNS.

            Any kind of diagnosis or treatment of a dog should be made after a consultation with a veterinarian. A veterinarian can do a deep nasal culture for a dog, using the same technique as for people, with the culturette inserted as deeply as possible into the nose. The culture is run by Diagnostic Laboratory Medicine using as the same API-STAPH (or similar method) culture technique to avoid overgrowth (false negative) with a non- biofilm forming organism.

            If the culture is positive and the organism is the same in the dog as it is in the low MSH person then the same BEG spray has been used by veterinarians with excellent success with the dog. Physicians may not diagnose or treat dogs.”

    • Kathy,
      Have you treated your own dogs yet? While Shoemaker mentions treating dogs in the same manner as people, I have no idea how I’d get my dogs to take the burning BEG spray multiple times per day for a month or longer.

      • Gretchen,
        No I haven’t treated my dogs yet. Since I had a clean nasal culture about 2 months ago I’m going to wait to see what my next one indicates after doing a round with the beg spray. I know I did get a re-exposure to a water damaged building and am hoping that was it not my dogs. If I still have marcons after being really careful where I go I’ll have to address testing my dogs and doing the spray. My advice right now as a trainer is talk to your vet about treatment options.

16. Greg, why is it that MARCoNS, as prevalent as it seems to be, is not something that a regular MD or ENT can test for and have covered by insurance? I’m wondering why they don’t recognize this, and why it must be sent to a special lab and paid for out of pocket. I have pain all around in upper jaw where I had root canal teeth out, and surg to clean out, but still aching in those sites, going up into my head, where my head is even tender to touch. I know there’s something going on there, but whether it’s cavitation related (last dentist didn’t see cavitation on top, but on bottom, though he could be missing them), or in my sinuses (which doesn’t show on 3D XRAY apparently), it’s hard to tell. But now it does make me suspect MARCoNS. And I am still in suspected mold environment. I do have one bicuspid on upper right that has been giving me trouble for some time, and just had it filled recently, but I’m wondering if decay was too deep and may need extraction. But I don’t think that would account for the pain on both sides of extraction sites, and I had all back molars out. I’ve considered having ozone injections in those sites, since I don’t think I want to go thru that expensive surgery again, if it’s just going to come back. The injections you describe in the sinuses of ozone sounds like a promising possibility. Finding someone around here that knows that technique may be difficult though. Some I’ve found are starting to use ozone, but I think more with extractions and along with fillings. I wonder if they have the usual ozone equipment, if they’d have the ability to drill into bone as described above, and do those types of injections. So far, I haven’t found anyone in my area that knows what to do about it, saying it could be sinus infection, or bone or nerve exposure, or I’m not sure what. Never any reasonable, clear explanation.

    • Regarding why insurance doesn’t cover MARCoNS testing, it’s money-politics-inertia. If we keep pushing for real help, eventually the system will change. If we sit back, it’ll only get worse.

      I remember the side of my head with the badly extracted root-canaled tooth as being very tender to the touch for about a couple of months after trying to clean out the infected bone pocket where the tooth had been.

      You may want to consider an ozone injection or two to calm down that bicuspid. I’ve heard it can help. Also, make sure your bite is OK – that the filling isn’t too high. In general, bite adjustment is important. Personally, I also wear a NTI TSS splint/clip over my two front teeth to prevent clenching during sleep. This helped a lot with sensitivity and tooth pain in general. You could test out the mouth-guard option by buying an inexpensive guard from your local drug store and giving it a try for a week or two.

      If it were me, I’d definitely try to find a dentist that uses ozone. They’re around but don’t generally advertise the fact that they use ozone – even though medical ozone has been used for over 50 years in Europe. I’m not saying ozone is a panacea for everything dental, but it sure looks promising, has little risk, and doesn’t cost much – passes my criteria for being worth a try when it comes to alternative medicine. You should be able to find a “Biological Dentist” near by. Give them a call. If they don’t use ozone, hopefully they’ll know who does. As far as the ozone injection into sinuses above the canine teeth, dentists are very good at giving injections in the mouth. This is a “no brainer” for them so long as they can produce medical grade ozone and have a simple luer-lock adapter for their ozone equipment. The procaine is a must because even a small dose of 4cc of ozone is going to really “burn” without this mild anesthetic.

17. Can Marcons cause constant throat pain and clearing? My son has severe sinus issues (over 2 years now) we have used Natural remedies, and his Mold had him Gentamicin spray from Woodland Hills Pharmacy and seems like things are really stirred up now and his throat pain is over the top! SIGH.

    • Those with CIRS have low MSH 89% of the time. MSH regulates the cytokine response in the skin, gut, and mucus membranes of the nose and lungs. Low MSH results in impaired immune defenses. Perhaps the Gentamicin spray in combination with low MSH this could lead to throat pain. Personally, I had a constant post nasal drip before treating for MARCoNS. Maybe others can comment.

      Does you son have MARCoNS? Has he been tested for CIRS?

      • My son is being treated by Dr. Michael Gray In Benson Arizona for Biotoxin and CIRS, since April 2014, My son is 23, he moved back home after the apartment he was living in made him very ill. As his mom, and Nurse, I see what this illness has done to him. The Dr. did a Nasal Swab test and it did come back positive with Gram Negative Staph infection, not sure if that is Marcons? That is why he was treated with Gentamicin. From day one (a year ago) his throat is constantly hurting and I wondered if it was from the irritation coming from his sinus. Thanks so much for your thoughts above.

18. Thank you so much for your blog! Thanks to your site I learned of MARCoNS and did the nasal swab. After 2 years of sinus inflamation and vertigo I am starting my 3rd week of BEG spray. Within 24 hours I had instant relief in my sinuses. My question is since starting the spray I have been experiencing muscle and joint pain. Is this typical? I don’t want to do any damage. My dr suggested CSM, but I am not comfortable taking it and I am just using Bentonite clay as a binder. Thank you!

    • You’re welcome!

      I did have severe fatigue and pain near the end of BEG spray. I attributed it to gut dysregulation as both Bactroban and Gentamicin can be absorbed systemically when taken as a nasal spray. I took high dose liposomal vitamin C and started phase 2 of Jini Patel Thompson’s protocol in “Listen to Your Gut” that consists in part in taking 10 drops of wild oregano oil in the morning to knock out the “bad guys” and Natren probiotics in the afternoon and evening to repopulate with the “good guys”. It helped a lot.

      I’m not sure why your Doctor wants to prescribe CSM. It doesn’t sound like you’ve been diagnosed with CIRS. On the other hand, if you do have CIRS, I would encourage you to read my Binders article.

19. Hey Greg,
    This is the same Trevor that posted before who had the heart attack. Thanks for keeping this up.

    It’s taken me forever to work around to things. The local Functional Medicine MD had me work on my diet more and do a intestinal cleanse before putting me on Cholestyramine about a month ago. Three weeks ago I started the BEG spray 2 squirts, 3 times a day. At the same time I started using Neilmed Sinus Rinse three times a day, 4-6 drops of Biocidin drank in water (incorrectly) and Xlear once a day. Last Monday I sent an email to my MD describing how my nose had been bleeding slightly and I was coughing up phlegm. Apparently I remembered the instructions incorrectly (I think they should have them written down) and the MD thought the cough might have been from using the Sinus rinse at night before bed. I corrected to follow the instruction of using the Neilmed rinse once in the morning with the Biocidin in it (that makes a bit more sense, dopey, or maybe I should say, moldy me) and the Xlear a number of times throughout the day.

    Now, being six days later, I’m still hacking up stuff. I have an appointment with the MD next Tuesday and maybe I’ll get some answers but I don’t know if I gave myself an infection from the rinse, especially without the Biocidin in it, or whether I’ve driven the stuff from my head down into my chest (a bit scarey). The MD didn’t seem concerned after checking that I don’t have a temperature . However, since I had been on it over 3 weeks, and that might have been long enough, because of my reaction, I was told to stop the BEG.

    After rereading your article I’m a bit skeptical that the BEG is gone. I’m going to bring up some of the points you made at my appointment.

    I’m awake half the night which I really don’t need. And seemingly I’m falling apart, one of my night coughing fits felt like it temporarily dislocated my hip and now whenever I cough I get pain. It reminds me of the pain I had from the stent insertion but that was on the other side. It does feel like I’ve maybe tore something. I’ve heard of cracking a rib coughing but not dislocating a hip. I’m coughing a fair bit so it’s not good.

    I took some Naturade Expec with guaifenesin in it and it doesn’t seem to have helped. I don’t want to take a cough suppressant because I want it up and out. If I don’t get enough sleep tonight I might take a sleeping pill tomorrow night.

    For perhaps good news, my thoughts might be a bit clearer. I’m not quite sure at the moment since I’ve been lacking sleep but I’m definitely seeing things a little different. Clarity can also be a little disconcerting though as well.

    Anyway just wanted share and see if you had any input. Thanks again.

    • Hi Trevor,

      It’s good to hear from you again, although unfortunately, it’s not under the best of circumstances.

      Lately I’ve been into numbering my comments (LOL), so here goes.

      1. Last I heard, your house came back with an ERMI of 10! This is so important to look into because if you’re living in a moldy environment, it will be close to impossible to get better. Did you see the long Mold Testing article? Take some time to read over the sections on ERMI and HERTSMI-2. It’s so important to make sure your place is OK. I can’t stress this enough.

      2. In the MARCoNS article, I mention that Dr. Shoemaker says it’s important to get baseline VCS and MMP9 levels before starting BEG spray and then monitor them especially is symptoms worsen. If symptoms worsen and VCS falls first in column E followed by column D, then you must stop treatment and recheck MMP9. If MMP9 is rising and VCS is falling in the face of a HERX, this is indicative of active Lyme. Non-Lymies will have stable MMP9. You never mentioned anything about Lyme and it doesn’t sound like you had an intensification of symptoms with CSM like Lymies (see Binders) so my guess is that it’s not Lyme, but I’m putting this out their just in case and for others that read this.

      3. In my experience, that sounds like a lot of product to send up your nose all at once. BEG spray alone was a challenge for me. It’s reported that Biocidin knocks out both bacteria and fungi and can cause folks to HERX. Founder and CEO, Dr. Rachel Fresco, recommends taking binders with Biocidin to mop up toxins so it sounds like HERXing can be a real issue. The Neilmed Sinus Rinse is just a soothing salt rinse so that shouldn’t be an issue. Although personally, if I send too much liquid up my nose, it can lead to sinus congestion and headaches. If it were me, I’d think about just taking the BEG spray along with eating well and whatever probiotics you find helpful. In the section on nasal fungi, it’s mentioned that glutathione nasal spray can help with side-effects by reducing swelling. By the way, you said before you had Methicillin Resistant Staph Coag Negative but not MARCoNS. Did you see the updated discussion in MARCoNS about Coag Negative Staph and how the real question is whether they’re protected by a biofilm?

      4. It sort of sounds like the rattle-and-shake that goes along with putting a torn up body back together again. Its two steps forward and one step back. Sometimes a given treatment won’t work but you’ll learn what needs to be addressed next in the process. Months later, you may be able to return to the treatment and have success with it. Definitely take care of yourself and make sure you get sleep!

      5. Consider taking lipsomal C.

      All the best.

      • Hey Greg, thanks for the response.

        1. I had read through your ERMI and HERTSMI-2 articles a couple of months ago. I just had another look and you have been busy updating (thanks again). I don’t recall the “dirt factor” before. Maybe I missed it. I’m very curious about the improved DNA testing. I’ll try and read through everything in the next few days. My house is in wooded area in the middle of big city and it is very leaky. My HERTSMI-2 score was 12 from one swiffer test of multiple surfaces. I’ve been staying at my neighbors but I have a cat I’ve been visiting for a few hours each day. I’ve been wearing a nurse’s mask while in the house but I don’t know if that really helps. I might have found a new home for the cat (sad) and if so I will have more options. That includes moving out to some land outside the city while I’m doing this detox.

        2. My local Functional Medicine MD had me retest my MSH and MMP9 about a month before I started this. I can’t find the results (aargh) and I’ll have to get a copy from them. I don’t know how much I trust the online version of the VCS. It seems like the clarity of the monitor would affect things a lot. I suppose if you used the same setup to test each time then at least the results would be relative. I see what you are saying though and I don’t think Lyme disease is my issue.

        3. I don’t know why my local FM MD didn’t include the rest of the protocol with Biocidin. I had an appointment scheduled with her tomorrow but I just cancelled it. She suspects I have bad bronchitis, which she says is mostly viral, but thinks I should check to make sure I don’t have pneumonia (oh joy). She doesn’t think it has anything to do with the BEG spray or nasal rinse but comes from my having a compromised immune system. I think it is both since this came on in the days I was doing the spray and rinse. It seems like a big coincidence. I’ve been coughing, and coughing up, less and less although I was still awake half the night. I have problems finding doctors I trust and I am not liking the idea of having to get checked for pneumonia. I think I will give it one more night and if there isn’t a noticeable improvement I’ll find someone tomorrow.
        I called Woodland Hills and the opinion was the BEG was not the problem since I was still having symptoms almost a week after stopping. To me, naively, it would seem me attacking a bunch of bacteria in my head would cause them to scatter or, at least, loosen and potentially work their way down my throat. It also seems very possible that I gave myself something from the rinse. Perhaps I didn’t do a good enough job of keeping it sterile.

        Yes I did say I had Methicillin Resistant Staph Coag Negative but not MARCoNS. That’s a story in itself but basically the previous function medicine practitioner, before this local one, didn’t receive, or maybe lost, the DLM results so I got them directly and misinterpreted what they were saying. It’s obvious now that I was meant to be looking at the letters following the susceptibility list of antibiotics but I was expecting a list to be provided within the Organism under the methicillan resistant.
        Thinking that the sample wasn’t taken from far enough back in my nose I retested.
        The first test, from last November, said STAPH COAG NEGATIVE – LARGE AM followed by METHICILLIN RESISTANT and the non-susceptible to list of antibiotics were ERYTHROMYCIN I, OXACILLIN (CEF) R and PENICILLIN-G R. I now read this as having MARCoNS. I’m pretty sure my local FM MD said OXCILLIN and METHICILLIN were the same but reading up on them I don’t think this is the case.
        The second test two months later said STAPH COAG NEGATIVE – LARGE AMOUNT but was NOT followed by METHICILLIN RESISTANT and the only non-susceptible to antibiotic was PENICILLIN-C R. I read this as not having MARCoNs.
        Neither of these had the MARCoNS present or not text that is on your sample. Also the two reports had different lists of antibiotics. The first included levofloxacin, oxcillin mic and tigecycline which weren’t on the second. And the second included linezolid, oxacillin (CEF) and trimeth-sulfa which wasn’t on the first.
        I was on a detox protocol, in between testing, from my initial FM practitioner which didn’t include any prescription drugs. Unless there was an error on the second testing, it looks like that protocol had an effect although nothing was going up my nose since he was going on my flawed understanding of the report that I didn’t have MARCoNS.
        I did read the updated discussion on biofilm producers which throws a different spin on interpretation of these results and maybe makes everything I just wrote a bit irrelevant. The local FM MD put me on BEG because I had a large amount of staph coag negative.
        I’m curious, when this is successfully treated will there be no staph coag negative found? I want to do a new test soon to see. Is there a chance that 3 weeks of BEG could have done it? I do feel a bit different.

        Looking up the Jarisch-Herxheimer reaction, I don’t have any of the symptoms listed. I feel okay besides feeling pretty tired from lack of sleep and limping a bit from my hip.

        I feel like I’m going on a bit but I don’t know what people might see as relevant. So ….

        I also noticed yesterday that when I bent over I could feel a slight pressure/pain just under my check bone. I think its around the root of one of my teeth. It’s also tender to push on. It’s not as pronounced today but it did have me thinking about you writing that these bacteria could be hanging out there. Hopefully I will be off blood thinners in a month and I think I need to track down a good dentist. Just now, looking for tooth references on your site I just ended up reading your Finding Help page. Maybe I read it before I don’t remember but it was good for me to read now. Now where are those boot straps again 🙂

        I’m not sure what to do with the local FM MD. Her plan was for me to start the Patricia Kane protocol. I don’t see any mention of that on your site but the local FM MD credits it for her own biotoxin recovery. She has also mentioned that I could look into chelation (more for cardio-vascular) and hyperbaric therapies (for both toxins and cardio-vascular health). Again, after reading you Finding Help page, I am more respectful of her work but I feel like I have lost confidence in her.

        In some ways I wish I had tried Asprey’s method, I really don’t like taking antibiotics. I was on his bulletproof diet for about a year although I probably took the low carb thing too far and wasn’t eating enough vegetables. I had moved off it around six months before my heart attack. I’ve had a nurse/neighbor laugh at me when I mentioned this. I think the late night ice cream binges that I got into once I was moved away from his diet was probably more of a factor. I maybe shouldn’t say but the dietician I consulted with after my heart attack, who was recommended by my original FM practitioner, said she wished I forgot everything I heard from “that guy”. It didn’t work out with the dietician and I bought Mr Asprey’s latest book and I’m thinking about getting into the diet again. The only time I’ve been able to manage sugar cravings was on his diet. The cardiologist who was part of saving my life and inserting a stent said no saturated fat however his radiologist said he had to say that rather than explaining good fats from bad. I have an appointment with him in a few weeks and I’m going to ask him again directly.

        Excuse me if this ended up being a bit much. Thanks again.

        Oh, on the Liposomal C, that was part of my original FM practitioner’s detox and I took it for a couple of months along with Glutathione and some other things. I asked my local FM MD for a good Vitamin C and what she recommended was not liposomal. One of the little reasons why I’m thinking of changing to someone else.

        • Hi Trevor,

          In part, it sounds like you’re working through whom to trust – what paradigm makes the most sense for you. This is a big question. When I crashed, I quickly came to the conclusion that conventional medicine didn’t have a clue related to whatever was wrong with me. My symptoms were so insane and I’d seen what happened to siblings that went down the psychotropic drug route. Also, I refused to accept that I’d simply just lost my mind for no apparent reason. Everyone has to decide for themselves what’s really going on. It’s not easy and that’s why I wrote Choosing A Path.

          They say that people intuitively know what’s wrong and if you listen, you can pick up on this. Given your heart condition and discussion on diet, you may want to read Wheat Belly by cardiologist Dr. William Davis. He essentially learned he could heal most of his patients with changes in diet alone! From where I come from, it’s very important to eliminate inflammatory foods.

          In both test results, you’ve got COAG NEG STAPH. In my book, I’d treat it because in the first case we know they form biofilms and in the second case, we’re not sure that they don’t form biofilms. I typed the MARCoNS present or not in red on the forms to help people read them. When you’re clear, there should be no COAG NEG STAPH listed.

          Related to your cough, the human body is a marvel of inter-related chemistry, electricity, magnetism, Spirit, and the like. If you start pounding antibiotics, it doesn’t surprise me that something else begins to rattle and shake. It’s not very scientific but all kinds of weird symptoms popped up for me depending on the treatment I was pursuing. Do what you need to get through that cough.

          If you’re going into a moldy house, I’d definitely wear a P100 mask with a carbon filter. I like this Welders Silicon Mask (has some plastic parts) with P100 Carbon Filters. Change your clothes and wash your head immediately after. See this discussion related to online VCS testing.

          Personally, I’m guessing you won’t be surprised to hear that although Patricia Kane’s protocol has clearly helped some, that for those that have been properly diagnosed with CIRS, I’d make an all-out effort at following Dr. Shoemaker’s protocol first because of all the data behind it. Well, at least through treating MARCoNS along with diet and fish oils. I’m putting this caveat in here because eventually I hope to write about some alternatives to later steps.

20. After killing marcons (took 6 months), we’re in process of going after mold, via sinus with chelating to kill biofilm and nystatin anti-fungal for mold …

    I feel good after the pm dose of nystatin even some energy but my poor brain..herxing die off of biofilm right after I do chelating ..
    I use that nasal touch cool machine from ASL pharmacy ..love it
    I’m doing theives many times a day and a high quality silverbiotics I take orally as well.

    Just read that done nasally I can use the silver in with the chelating ,
    Need to ask dr ,but whatever I could do ro help with bad herxing brain detox die off
    I was already having brain symptoms with my mold toxicty illness
    Now it’s so horrible can’t function.
    Been doing things like CSM I feel good after I do and we’ve finally got me up to 3 a day ..but it’s right after for many hours I get this brain problem on the chelating biofilm killing thing I get symptoms ..
    I waiting till noon to do so I can have some function in am, then do my nystatin at 9 pm .
    Would be grateful for any suggestions .
    Pardon any typos had to redo much with my brain surprised I can write at all !

    • It sounds like you’re using the ASL pharmacy “Chelating PX” (EDTA and Polysorban X) solution as a nasal spray once in the morning and a Nystatin nasal spray once in the evening. I’m not sure what you mean by “bad herxing” but given that it sounds like it happens after taking EDTA, maybe this isn’t so surprising.

      As we know, EDTA busts biofilms. My experience with the EDTA spray from ASL is that some of it ends up being swallowed. Given that it’s quite likely folks with CIRS have gut dysbiosis, you end up knocking down biofilms in the gut too.

      When the biofilms are weakened, the body and the Nystatin attack the exposed bacteria and fungi. Too much of these toxins can be problematic. Perhaps taking some activated charcoal 30 minutes after the spray to mop up toxins in the gut may help. Other supplements to either bring down inflammation like Turmeric (the kind without a black pepper additive) or enhance detoxing like Vitamin C and liposomal Glutathione may help.

      • Thanks Greg!
        Yup I use a nasal machine and we are going after biofilm ..I’m already doing csm cholestratryramine when I do the chelating I dont seem to have a issue with nystatin in evening it’s the chelating..I take earlier in day
        Not sure charcoal would do any better since I already doing csm 3 times a day..
        I also take theives in my throat before hand and on silver , I thought I read putting the silver solution in the machine with the med could be helpful I may ask my doctor about that ..
        I already have the brain problems with my mold illness but this chelating has doubled it ..so I’m glad for any suggestions ..we killed marcons in 6 months ..and this is the next thing .
        Thanks appreciate your suggestions !
        Maybe the turmeric or it c would help its a bad brain reaction ,I can’t think remember how to do things ,all spaced out ..

        • Cool. Glad I could help. Although CSM is great at mopping up the inflammagens responsible for CIRS, other binders like activated charcoal have additional benefits. My understanding is that charcoal works well for mopping up the endotoxins in the gut. We know those with CIRS have low MSH and consequently “leaky gut”. Taking activated charcoal 30 minutes after the EDTA spray and away from food, can help adsorb some of the endotoxins released when bacteria are killed after being exposed by the EDTA. Charcoal is one of those low risk alternatives that’s worth considering.

          Totally look into increasing Vitamin C and Turmeric without the black pepper extract “bioperine”.

          All the best.

          • Hi Greg and Debby

            What kind of herxing have each of you experienced. I am using the ASL kit and have started with mupirocin (Bactroban) only. I could not tolerate the BEG spray from Hopkinton. I realize mupirocin will not cut the biofilm, but I have a second set of ampules for Amphotericin B. I am hesitant to take the Ampho, and was wondering where you got your nystatin ampules ?I hear it is almost as effective and a lot safer for the ears, irritation, etc.

            I am going through horrible herxing just with mupirocin. Tininitis and weakness/fatigue. I know Greg felt flu like, but that was after the 6 weeks. I’m only on day 5 . Im also lyme positive and babesia positive and it might be the Mepron which was started a day after the ASL. I also have mold. Any comments are appreciated

            • Just for a point of reference for others that read this discussion, it’s important to test for MARCoNS before treating. When it comes to Lyme, consider reading the section on Lyme in Binders article. Often, it’s the biotoxins left over after knocking out Lyme that are the trouble and this is where mopping up toxins by treating for CIRS makes good sense over taking more antibiotics – see this discussion with Mitch.

              Bactroban is not systemic whereas Mepron is a fairly stout systemic antibiotic. My guess would be it’s the Mepron in combination with gut dysbiosis. You’re undoubtedly knocking down gut bacteria and this produces toxins. Personally, I just don’t think bacterial die-off in the sinuses can compete with die-off in the gut. When I crashed from BEG spray, I attributed it to bio-film busting with EDTA and the systemic Gentamicin antibiotic eventually messing up gut flora. The positive results from treating with probiotics and Wild Oregano oil seems to confirm this.

              The Nystatin comes as 5,000 IU encapsulated powder. You open the capsule and mix it in a solution of distilled water with pre-mixed saline packets along with the EDTA solution that comes in plastic ampules. Personally, I think a person could save some money by getting their doctor to prescribe preservative free Nystatin as insurance will pay for “regular” Nystatin as opposed to ASL products.

              Regarding Amphotericin B, I think you’re going to get into more trouble with Ampho B based upon the discussion on antifungals in the MARCoNS article and what I’m preceiving as a somewhat fragile physical state. Also, Nystatin and Ampho B are for fungi while Bactroban and Mepron are antibiotics for bacteria/Lyme. I’d suggest treating Lyme first, then MARCoNS, and look into antifungals later.

              Other suggestions are to consider backing down on the Mepron, using charcoal as discussed, adding in a biofilm buster with the nasal spray (EDTA-Colloidal Silver-Xylitol), and dropping either the MARCoNS treatment or Mepron to see which is the culprit. Also, do enough testing (if you haven’t already) to really confirm you’ve got CIRS and then treat it with a vengeance if you do starting with Lyme first. All the best.

21. Hi Greg

    Hi Greg, This is D. I agree. I’ve gone through all the testing. I have large amt of MArcons, resistant to 4 abx. I just want to treat safely since I am experiencing tinnitus, prob related to lyme. This means I will not be using the G in BEG. I did use a few sprays of it a month ago. I have 11-3-52B multi and the 16 lyme for my other HLA-DR. I had real time labs mold urine mycotoxins and tricothecenes were over the limit. I’ve been on CSM for several months now and we are in the process of doing another real time labs. As you know, as one drops, often the others start coming out. Dr believes my sinuses have
    mold. I have the Ampho B ampules but will not use because of the recent
    tinnitus starting 2 wks ago. I want to use the nystatin safer approach. I’ve
    been on oral nystatin for several months now during abx treatment. I’m hoping some people on this list can let us know if the did the nystatin approach for sinuses, and how it went. Thanks. D

    • Hi D,
      It sounds like you’re on top of things. I had crazy loud tinnitus for a time and it was quite unpleasant especially since my nerves were already fried. For several months, I went around 24 hours of the day carrying a pocket MP3 player listening to “white noise” through a set of earbuds. I think you’re wise to not take the Gentamicin especially considering the tinnitus.

      If you haven’t already, check out the Binder section on Lyme as monitoring C3a and C4a may help prevent taking on any more antibiotics for Lyme than is absolutely necessary. Also, it sort of sounds like you didn’t get an intensification of symptoms with Cholestyramine (CSM) and this would be somewhat unusual for a Lymie unless you pre-treated for a month with a no-amylose diet and omega-3 oils. It’s just a thought.

      I’ve done Sporonox (Itraconazole) with EDTA in a NasaTouch and started to go to the “dark side” after two weeks – bad anxiety and fatigue. I attributed it to messing up gut flora as some product gets swallowed and Sporonox (like Ampho B) is systemic. Switching to Nystatin with EDTA was the ticket. Nasal anti-fungals with EDTA have given me another nice bump up in my overall health. I’ll eventually add this information to the MARCoNS article.

      Also, even though there is some controversy about RealTime testing, if we assume it has some diagnostic basis, my question would be where the mycotoxins are coming from? I’m assuming you’re eating a clean diet so that leaves environment. My guess is you’ve already at least done a HERTSMI-2 test but if not you may want to look over ERMI Basics.

      • Hi Greg. Thanks for the great info. I have been clinically diagnosed lyme pos, as well as cdc positive on Western blot. I am also FISH pos on babesia. I was an avid mountain runner prior to getting bit in May 2013. Unfortunately I was untreateted and undiagnosed until dec 2014 at which time they also took blood antibodies on Labcorp mold panel. The IgEs were ok, but all molds for IgG were multiples of the upper limit. From what I understand IgGs are experimental, but it gave us a clue that mold might be a cofactor in the illness. At that time we took the realtime.

        The suspect was a very moldy bathroom shower, but even more probable a corporate remodeling of the floor that I used to work on. At the time I was still in the floor as the carpets were ripped up, and glue was sanded. Blowers were blowing massive dust plums throughout. The dust was visible. The carpets must have been there for at least 20 years. I did an Ermi of the bedroom and even areas of visible mold in bathroom and it was 3.2. Since then the bathroom is curtained off, shower assembly pulled out, and I dont use it for showers, just for toilet. Its prob well below 3.2 and closer to goal of 2.

        Regarding CSM, it was rough at first, but after about a month it got better. I increased very very slowly over the course of several months. I have reduced recently since blood cholesterol is getting too low at 140. The tinnitus is bad right now. I think it’s after latest Lyme abx, but related to Lyme itself. It’s a low buzzing hum common with Lyme. I understand it takes a while to resolve. By the way my original MSH was quite low at 11, and as you have pointed out several times, this in and of itself is a complete health nightmare. I am hoping as the immune system is calmed that those leptin receptors in the hypothalamus will free up so that more MSH will be produced Thanks for the nystatin tip. I will go the same route. No Ampho B for me. Regards, D

        • It’s good to hear a bit more of your story. Mountain running sounds like a blast. Thanks for sharing. With a CDC positive Western Blot I’d say it’s pretty definitive regarding Lyme. What antibiotics have you taken since December 2014? It sounds like testing is still coming back positive for Lyme? Also, your approach of slowly dosing up on Cholestyramine (CSM) seems like a good way to go for Lymies. Did you pre-treat with a no-amylose diet and fish oil?

          I don’t know much about blood testing for antibodies against mold. However, this article seems to suggest IgG and IgA antibodies are telling for many molds while IgE antibodies only work for Aspergillus and satratoxin.

          What do you mean by “a very moldy bathroom shower”? How long was it moldy? What were the scores for the 5 HERTSMI molds and what were the overall scores for Group I and Group 2? When they tore out the shower, did they put up air tight plastic, run large fans exhausting outside to create negative air pressure in the work space, bag materials that were carried out of the house, and then clean ductwork, the building, along with either air-washing or fogging the space afterward? The reason I ask is that “very moldy” and an ERMI of 3.2 seem incongruent and also it’s super important for someone with Chronic Inflammatory Response Syndrome (CIRS) to remediate well – especially a dreaded 11-3-52b.

          • hi Greg, thanks again for the great information. This website has information that is indispensable for folks with biotoxin illness. Sorry for the length of this post, but i think your insight on the mold part is really helpful to me. ********One correction: ERMI is 4.80 and that was direct samples from mold in cabinetry (not exposed areas, but closed off. There is no water leakage, it is from a hamper that was extracted).

            I read the article on the blood testing for mold. It looks like the IgG were the most telling. The article quote : ” The IgG antibody levels against all 7 of the molds used, as well as the 2 mycotoxins, were significantly greater in patients than in controls.” I’m so glad you forwarded the link. All of my IgGs were in the stratosphere. There was a lot of concern over this bloodwork, but i did not realize why at the time, since i thought that the IgEs were more important. This article clarifies things. By stratosphere for my lab results, i mean many multiples over the upper limit. I’ve never had any blood test that was so over the limit. For example the Aspergillus fumiget was 65.3 (limit 1.9), niger 50.5, even Stachybotryus atra at 7.0 (limit 1.9). Trichoderma viridae at 4.9. Alll 8 way over the limit. The article further states: “….along with a significant elevation in IgG, IgM, or IgA antibodies against molds and mycotoxins, could be used in future epidemiologic investigations of fungal exposure.”

            Regarding my abx for lyme and babesia, i started w/ Septra XL and Zithromax and after 2 months moved to high dose doxycycline. It was then that my neuro lyme symptoms really came out, especially twitching and tinnitus. I was pulled off doxy due to tinnitus, but i think it’s a lyme flare in my opinion since doxy has great brain CNS penetration. I am now on zithromax and mepron for babesia. i also know that mold toxins can cause tinnitus.

            Regarding the CSM i did not pretreat per Shoemaker protocol but we are following his protocol, especially those first 4 critical steps. I don’t think one can get rid of lyme and babs in 3 weeks, even with good immune antigen clearance genetics. I have bad genetics and will probably have to be on maintenance for a long time. i have not been blood retested in this area.

            So i am being treated for both mold and lyme.

            Regarding the ERMI (4.8, not 3.2 as previously stated), i did that when i did not know what was going on. The samples were from the bedroom which i know is clean and some areas of the cabinetry in that bathroom (direct mold samples), with the shower that showed obvious mold growth. Also some other areas in the bathroom that had obvious dust. The rep at ERMI stated that if i intentionally sample on mold in the bathroom it will skew the score, so i’m sure that is why it is 4.8. The shower was not removed remediation safe. I tried to tell the family member prior to ripping it out, but he did not listen. However, most of the mold was stuck to the shower assembly and that was removed without agitation very very carefully. The bottom rails had clear mildew and perhaps wet mold soup, so i don’t know if spores could have flown freely off it.. The top under the cover was more concerning, black fuzzing mold fungal growth, i am guessing stachybotryus, but not sure, since it was growing on a metal door top and i heard stachybotryus does not grow on metals. The hamper in the bathroom as had some old stachybotryus that was rubbed out a long time ago (i don’t know when). The hamper assembly was thrown out. I could not get samples from the shower assembly because i did the ERMI after its removal. I don’t use the bathroom any more, except for the toilet. The house was not sealed off unfortunately. ****I can repeat another ERMI on dust from the ventilation, bedroom and bathroom, if you think it would be useful (let me know), to see if there are spores that have settled since the extraction*****. I’m convinced that the workplace remediation was probably the source of the my mold exposure, because of the variety of molds elevated in the IgG bloodwork and the amount of dust plumes during the rug pulling.

            Regarding HERTSMI-2, i just looked at the ERMI report. The report that i have (4.8) has low numbers for all 5 of these molds (Spore E./mg), and i did sample an obvious mold growth in the cabinetry. The most worrisome one was Stachybotrys chartarum at 4.

            Overall scores on the ERMI were Group 1: 14.25 and Group 2: 9.45 for ERMI score of 4.80.
            thanks again

            • Hi D.,

              Regarding anti-body testing for mold, I made a typo that I’ve fixed in my pervious post. Yes, IgG seems to be the most telling. Those levels seem super high! I’m glad the article helped.

              I’m not going to comment much on Lyme other than to reiterate possibly looking at C3a and C4a as outlined in the section on Lyme in the Binders article. I’ve got my fingers crossed that as you work your way through Dr. Shoemaker’s steps, symptom will abate. Having said this, even Dr. Shoemaker has said that he’s seen Lyme patients that did not have a tick bite or an ECM (bull’s-eye rash), had low C3a and C4a, and had a negative Western Blot Lyme test. In other words, Lyme is just hard to diagnose.

              So it sounds like you had a hamper in the bathroom that you sometimes refer to “cabinetry” that was moldy. I’m guessing this was a built-in unit. In addition, it sounds like the metal framework around the shower door had hidden mold trapped under various metal parts. It doesn’t sound like any of the drywall or wood framing behind or below the shower unit was damaged but you had it removed anyway – maybe to make sure there wasn’t any other mold damage? I’m still not sure if we’re taking about a couple square inches of mold or a couple square feet.

              If it were me, I’d at least do another HERTSMI-2 sample if only because you swiped a moldy area. If I had the money, I’d do an indoor and outdoor ERMI swiffer sample as I outline in Mold Testing. Read my Swiffer section in the Mold Testing article to see how to do a swiffer sample well – 10 different areas, swipe in one direction, etc.. Definitely swiping moldy areas will skew the results high. When you say the other four HERTMI-2 molds besides stachy weren’t high, I’m assuming this means they would get a HERTSMI-2 score of zero.

              I’m just trying to wrap my mind around what sounds like a moldy bathroom and seemingly low HERTSMI-2 scores. I doubt it was stachy in the hamper because it really has to be sopping wet. Aspergillus or Cladosporium are much more likely. As far as I know, stachybotrys will grow where ever there are spores, the right moisture conditions, and food – high cellulose content and low nitrogen content. I’ve sampled big growths on dirty all-metal air-conditioning coils.

              Regarding remediation and contamination, any substantive growth that has gone on for some time is almost certainly through out the whole house. Also, it’s impossible to do remediation well without proper containment – especially for an 11-3-52b. It’s hard to say what the effect was in your case so I hope saying this isn’t upsetting. Let me know if it is and I can tell you a couple stories of truly dumb stuff (you were just trying to do the best you could) that I’ve done starting with a repair I did in a moldy barn last week and suffered the consequences. :dizzy: For others that read this, there are many examples of homes that were much worse off after improper remediation because the microscopic toxins weren’t contained and cleaned properly.

              All in all, I’d say another mold test seems to be in order.

        • Hi D. After reading your comment, I just had to chime in because our histories are very similar. Not a mountain runner but a former avid hiker. I started growing ill in the winter of ’09/’10 (unprecedented fatigue, sweating episodes, insomnia, drop attacks, etc.). Six months later my workplace replaced the carpeting in our small staff kitchen, down the hall from where I worked. I was the only person in my small office to have a VERY extreme reaction to the newly installed carpeting which was glued down. I didn’t know it at the time but I developed MCS (multiple chemical sensitivity).

          I’m pretty convinced the winter episode was undiagnosed Lyme. It’s funny that you mention the carpeting dust because that’s also been a theory of mine. I happened to walk in when the guys were taking up the old carpet which had probably been there for a while and which I’m sure had seen water leaks since the office water cooler was in there, on the carpeted area, and had leaked at least once that I know of. I didn’t see any visible evidence of anything in the air but I’m wondering whether I didn’t have a mold hit from the carpet which helped to kick things off for me.

          Only subsequent to the carpeting episode was I clinically diagnosed with Lyme and then within the last year learned I am multi-susceptible (4-3-53). I have the tinnitus too–no fun.

          • hi Greg and Nancy,

            Greg i am going to redo the ERMI for now. I will get C3a and C4a as well.

            Nancy it sounds very similar. We are not sure which of these spun the immune system out of control. I was healthy up until around April/May 2013. The building that i work in is a huge multi- story building, and the floors are expansive. So when they were ripping up carpeting, it was hundreds and hundreds of square feet. The building does not have windows, but did have doors to balconies but they were firmly shut. This renovation went on for weeks. Not only carpet, but repainting. The paint smell was very very strong.. The HVAC system probably recirculated things for a long time after as well. During those months my problems started with intense exhaustion. After i got the bite in end of May, i had typical acute lyme and babesia symptoms like night sweats, insomnia, rapid heart beat, exhaustion, fatigue and anxiety. I still think that i would have been able to handle the mold had it not been for the lyme.

            Nancy have you had any bloodwork done? Any ERMI testing in your house? I had a Labcorp mold panel done, and my IgGs were way way out of range. Greg pointed me to a very interesting article indicating IgGs are very valuable as an assessment for mold exposure. I did a RealTime lab mycotoxin test and had elevated tricothecenes. I am awaiting my retest that i just did. I am going to have a retest with Labcorp mold panel to see where the IgGs are now, given the new info i found out from Greg.

            What protocols are you doing for your lyme treatment and mold? Are you also following Shoemaker’s protocols? Also, have you had a CIRS diagnosis confirmed (by elevated TGF-beta1, low VIP, low MSH, dysregulated adrenal/cortisol and/or aldosterone, high MMP-9, C4a, C3a, etc). MSH will be very low with CIRS with either lyme and/or mold.

            It’s nice to hear from someone who has experienced something very similar.

            • Dr. Shoemaker has said that he believe CIRS is set in motion due to some inflammatory event. Certainly getting dowsed with chemicals from new carpeting and paint could have been the trigger – even without considering mold. Nonetheless, if you’re still working in that building, it’s important to know that it’s not moldy.

              Furthermore, once CIRS is activated, folks often develop chemical sensitivities. I worry that if you’re still in that building that the VOCs alone could be a real problem. Carpets can off-gas VOCs for five years or more. Personally, learning that many of the symptoms I experienced were actually coming from chemical exposures or gut dysbiosis, and not mold, was very useful.

          • Hi Greg I am out of the building. The carpets created the biggest and most noticeable smell

            The article makes sense. I was just considering yesterday the off gassing that must have been present after reading one of your other articles about an inspector that you used for your own house. Regarding the bedding in the article, I originally had a synthetic, but the gassing was insane. I returned it for an organic cotton, much more expensive , but worth the investment. I am out of the building for the time being. Thanks again for the insightful information.

            • I like cotton and wool for blankets and sheets too. Since I’m always on the look-out for mold and don’t wash my pillow often, I like polyester. For whatever reason, the polyester pillows don’t bother me. Maybe the one you tried actually had flame retardants? Even though polyester is supposed to meet fire standards without treatment, they still sometimes dowse it with chemicals. However, it sounds like your pillow actually had a smell to it. The Aller-Ease pillows I like don’t have a smell and are chemical and pesticide free. Anyway, I’m just making mention for others as we all know MCS has a wide range of tolerances.

              I’m so glad you’re out of that building! Whatever building you end up working in, I’d strongly suggest you do a Swiffer mold sample on it.

          • D: Yes, I’m treating with a Shoemaker-trained doc. and am following his protocol. My #’s and the VCS tests are all improving except for my C4a which remains stratospherically high (it actually hit 17,000 and then dipped to just over 14,000). Yikes! I just heard on a mold page from someone who has Lyme and mold that their doc. told them that C4a’s over 10,000 is usually more than just Lyme. This makes me wonder whether I am getting exposed. We have had our home tested by EMSL for an ERMI and Mycometrix for a HERTSMI-2. Both say it is safe, confirmed by my doc.’s interp. However, there is a wall in our master bedroom I am wondering about but am terrified of anyone opening it up.

            Even having someone into my home is dicey–my MCS is quite bad.

            • Thermal imaging and spore traps taken through 1/4″ diameter holes are a couple of options for getting a better sense regarding what is going on inside that wall without opening it up.

              Dr. Berndtson shows C4a will go to 20,000 and higher (slide 22) with repeated mold exposures. Dr. Shoemaker has seen C4a over 190,000 with re-exposures. I think the idea is that high C4a results when a person is starting to recover and then takes a major mold hit.

          • Hi Nancy and Greg
            I will definitely need to get that C4a and C3a along with a retake of blood IgG mold panel

22. What is the ERMI testing by EMSL (did I get that backwards?) . Is this a different lab than mycometrics that’s doing same kind of testing and a recommended one? Also regarding IGG testing thru labcorb that was mentioned….How is this different than RealTime lab testing? Is it giving additional information,or something similar, and maybe covered by insurance? Thanks!

    • EMSL Analytical is a lab that does ERMI and mycotoxin testing along with other services. EMSL is different from MycoMetrics. In general, folks use MycoMetrics because Dr. Shoemaker has commented that he found they consistently do good work.

      The IgG and the like testing looks for antibodies in a blood draw. My impression was that it generally would only show positive results after a person had an acute (strong) exposure to mold. In contrast, RealTime testing looks for three different types of mold mycotoxins in the urine.

      To be clear, I know of no meaningful data behind either antibody or mycotoxin testing that shows they’re useful when it comes to diagnosing Chronic Inflammatory Response Syndrome (CIRS). CIRS is diagnosed by looking for a history of exposure, establishing that the person has susceptible genes, symptoms, and labwork showing that the immune system is in high alert. Granted there are lots of folks, including doctors, which use these tests (especially mycotoxins). However, besides the work done by Dr. Brewer trying to show a correlation between mycotoxins and nasal fungi, I don’t know of any other supportive material.

      More specifically, I’ve treated for nasal fungi using an EDTA biofilm buster and Nystatin. Dr. Brewer says the reduction of mycotoxins using this nasal spray combination is due to clearing fungi in the sinuses. However, I can tell you, that a fair amount of the spray ends up getting swallowed as post nasal drip. We know that gut dysbiosis is a major factor in CIRS. Is the antifungal really treating Candida or the moldy food I eat? Maybe coating the sinuses with anti-fungal spray is knocking down the effect of biotoxins that are invariably inhaled during the day? Maybe there are hidden colonizations elsewhere that are being knocked out?

      According to Doug Kaufmann, the body tries to protect itself by sequestering mycotoxins in fat (cholesterol). As such, it seems possible that if some unknown mold exposure is being addressed by the nasal spray then stores of mycotoxins may then be released over time but that’s just conjecture. For me, there are a lot of unanswered questions. From my perspective, if you’ve got the money, I’d say go ahead. Otherwise, focus on the “tried and true” diagnostic protocol established by Dr. Shoemaker.

      If coded properly (see Physician’s Order Sheet 6-20-2014), you should have a good chance of getting insurance to cover many of Dr. Shoemaker’s labs – unlike RealTime testing.

      • hi Greg and Loni, i might be able to add some useful information here because i have done all these tests. I first had the Labcorp blood mold panel. The IgEs were fairly ok but the IgGs were incredibly high. I did not think much of it, because standard thinking is IgG is past immune response. Greg forwarded out a paper. In the abstract they did see a high correlation to people who were exposed to mold environments and high IgG titers. In fact, of IgM, IgE, IgA, it seems that IgGs were most telling. Quote: “The IgG antibody levels against all 7 of the molds used, as well as the 2 mycotoxins, were significantly greater in patients than in controls.” I am going to have the test redone, after having been on CSM for several months to see if the immune system has quieted down.

        I had a Realtime labs shortly after the Labcorp and it did confirm Tricothecenes elevated. If you go to Mycotoxin Testing, they explain the other mycotoxins that they test for.

        I have read about several treatments with patients that show high RealTime labs values. In them, i found that typically one or two might be elevated. As the person is treated, the one or two go down, but the other(s) go up indicating a pulling out of additional mycotoxins. The primary mode of treatment was CSM in these studies. So it does seem to have some empirical value, but as Greg stated, there are so many other factors going on, if you are short on funds, the best thing to do is go through the Shoemaker steps and monitor the markers he indicated above in his post. (VIP, MSH, TGF-b1,MMP-9, C4a, etc….)

        It all boils down to how your immune system is doing and those markers seem to track that well through Shoemaker’s extensive patient data. I want to redo the Labcorp because the IgG is specific to immune function and mine were extremely high, indicating an immune response that is spinning out of control. My HLA-DR genetics also predispose me to this. My MSH, by the way was very low when tested a while back.

        hope this helps

        • Just ran across this quote in Doug Kaufmann’s “The Fungus Link Series”. He writes, “…lab tests for diagnosing fungal conditions are imperfect instruments at best. This is because testing positive for fungal antibodies in your blood stream means only that at one time in your life, the fungus indicated succeeded in infecting you. Even if you have eradicated the microbes through antifungals and a proper diet, the antibodies will remain.”

          • hi Greg thanks for the great information. I had never treated my mold or fungus infection up until the present. I am going to retake the test to at least see if the amount of immunoglobulins has gone down. I don’t think it is normal for the body to continue to produce so many IgG antibodies across all mold types in the absence of an active infection. I agree that the IgGs will always be there (and probably out of range), but 20 to 30 times the upper limit seems to be a red flag to me intuitively speaking. Something going on with the immune system spiraling out of control (CIRS).

            Lyme is the same way. They state that you will always show IgG antibodies even after successful suppression (you can’t eradicate lyme) of the bacteria by antibiotics, etc.

            I guess the question here is: does the numerical value of the mold IgG have much signficance?

            Additional red flags for me are my HLA-DR genetics , symptoms, and the RealTime labs. I know that there is speculation about the accuracy of RealTime labs, but i was elevated in that as well, so it is a second smoking gun. I am being treated now for the last 3-4 months, mostly chlorella and CSM. I am hoping the RealTime labs shows positive progress that we can correlate to the IgG blood levels. I will let you know.

            • Cool. From my personal experience, 11-3-52b types may have to progress through quite a bit of Dr. Shoemaker’s protocol before feeling better.

23. I want to skip the BEG method, and mainly do the Asprey approach using the neti-pot.

    A quick question; can these neti-pot rinses with all the silver and Xclear be done indefinitely, for years on end, with no detriment to my health or sinuses? I don’t know the science behind these rinses, but I’d be worried about doing this for the rest of my life and if the sinuses become irritated or burned by the rinses, or perhaps the rinses gets into the inner-ear, or is absorbed into the body, possibly leading to long term health consequences.

    Another question; I notice the current methods of decolonizing from MRSA staph involves applying Bactroban to the nasal cavity for 10 days. So MARCoNS and MRSA staph do not just live in the sinuses, but also in the nares (nostrils). Does this neti-pot method eventually destroy the staph in the nares? It seems to go right back into the sinuses, and barely rinses the nares.

    One last question on cleaning the neti-pot: I heard microwaving is a quick and easy way to disinfect the neti-pot for daily use. Can a ceramic neti-pot be microwaved until boiling? Would this extreme heat cause any leaching of the neti-pot material into the water, causing the water to contain trace amounts of the ceramic material?

    • Hi Gordon,

      I don’t know any reason why it’d be a problem to do nasal washes for an extended period. Having said this, I would hope it’d be a lot less than “years” to knock out MARCoNS. After a 2-3 months, I’d consider doing another swab. Although it doesn’t take long searching on the Internet to find the guy who turned himself blue with heavy doses of non-colloidal silver, this is not an issue with the small amounts of colloidal silver in a nasal spray.

      MARCoNS live way back in the sinus cavity and not in the nostrils. Case in point is if you only swab in the nostrils, you can expect the test results to come back negative.

      I don’t like microwaves even for heating water. They mess with the molecular structure of the water – see Water, Consciousness & Intent: Dr. Masaru Emoto. What about just using hydrogen peroxide?

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