Marcons ubiquitous and/or worth treating? references?

[wisdom_seeker]

My DS16 was just found to be positive for nasal Marcons. With the PANS, DS hates to irrigate his sinuses, so I'll do my best to do it if it is really worthwhile, but not if the Marcons are ubiquitous perhaps innocent bystanders.

 

Except for references to Dr. Shoemaker's protocol, I've found very little -- and nothing on PubMed on treating nasal colonization.

 

On Steven Buhner, who seems to treat Lyme and coinfections and (sometimes) Marcons wrote on http://buhnerhealinglyme.com/co-infections/marcons-staph-bacteria/that:

 

 

 

The claims I have read about Marcons are more extreme than I can comfortably endorse. Nearly everyone has resistant staph in their nose – that is part of the function of the nose (and various organs in the throat and the sinuses, and . . . ), that is, to intercept infectious bacteria.

If it really bothers you, 30 days of a cryptolepis/aida actua/alchornea tincture regimen (fromwoodlandessence.com) will clear it up quite nicely.

 

So is a Marcons result a significant finding? Should I search for it under a different term?

 

Does anyone have references, ideally to clinical trials of diagnosis and treatment in kids with cystic fibrosis or chronic sinusitis.

 

I don't even have a good model for what happens to these colonies when someone comes down with a cold -- do they go forth and multiply in the more copious secretions, or is a PANS flare from a cold from the obvious thing -- the viral inflammation?

[emst]

Buhner is really ahead of everyone on this topic of Colonies/nasal. Literature is just now being published.

[wisdom_seeker]

Buhner is really ahead of everyone on this topic of Colonies/nasal. Literature is just now being published.

Interesting. Buhner's point was that he'd only treat Marcons if it is bothering the OP; that the dangers of Marcons are over-exaggerated. Is that what you meant?

 

As far as literature on non-invasive nasal marcons, do you know which group(s) are doing clinical trials?

 

wisdom_seeker

 

PS. Normally I wouldn't worry about giving DS nose sprays even non-reimbursed meds, but with PANS I've learned I need to pick my tx battles. That's why I want to get the data.

[LNN]

My daughter (10) struggled/struggles with MARCONS. I don't think you'll find much literature aside from Shoemaker because I think this is his name for the condition. But if you search for "chronic sinusitis" or "resistant staph sinus infection" you'll find more research. You'll also find a lot searching for chronic fungal infections. It's real and it's recognized as the nemesis of people who suffer from chronic sinus issues but it isn't called MARCONS in the literature. Yet MRSA is unquestioned as a resistant staph infection of the skin, so it seems reasonable that a chronic infection of sinus tissue could also cause a subset of people some serious problems.

 

I get where Buhner is coming from and I respect his knowledge as an herbalist. There can be a lot of "the sky is falling" panic among people who have chronic diseases like lyme. But I lived through Pandas and Lyme with my son and in my experience, when people stay sick, you need to keep digging beyond the obvious infections because something else is keeping you from getting well. For both my son and daughter, mold was one of those roadblocks and I think Shoemaker correctly sheds light on mold and MARCONS as things that, when treated, can help people get on the road to recovery. You can fault Shoemaker for being a bit too zealous, for being too quick to blame mold for everything. Buhner's probably right in that for some people, staph is no big deal. But for a group of people, Shoemaker's dead on and has solid research to substantiate his views. The question becomes - is your child part of Buhner's group or Shoemaker's group?

 

My daughter is part of Shoemaker's group. She struggled with serious health problems due to mold in her school and developed MARCONs and a chronic fungal sinus infection. So the bad stuff in school eventually lived inside her, making her sick no matter where she was physically located. She didn't recover her health until we finally eradicated both the fungal and staph infections. BEG spray didn't work for her. She needed a nebulized concoction of itraconozole and clindamycin for several months. But it did slowly work.

 

I have to disagree with Buhner on one other often quoted statement he's made regarding the use of certain herbs. He recommends a blend of cryptolepis, sida acuta and alchornea. He says that he knows of no ill effects even tho cryptolepis and sida have the same mechanism of action as fluoroquinolones like cipro. Cipro caused serious side effects in my daughter and I think he's sometimes too dismissive of the potential side effects of cyrptolepis and sida. I have both of his books on antibiotic and antiviral herbs and while he does a great job explaining how they work and their benefits, the books are light on things to look out for, potential side effects, warnings about overuse. etc. I'd feel better if his message were a little more balanced. So I think you need to take statements from both men and evaluate them in terms of what seems to ring true for your family and your experiences.

 

One final thought - the research paper that came out a few weeks ago showed that Pandas occurs when antibodies against an infection travel up the sinus passages into the olfactory bulb and breaches the BBB via the cribiform plate at the top of the olfactory bulb. The paper then goes on to say that chronic sinus infections then seem to prime the immune system to (over)react to other infections beyond strep and specifically names staph and mycoplasma as triggers. So if your child has Pandas already and now has a resistant staph infection in his sinuses, then it seems like the stage would be set for a Pans flare if the MARCONS goes untreated. This was true for my daughter, who for years has been borderline Pandas but always quickly recovered if we got her on antibiotics quickly. Now, after the mold and MARCONS issues, she seems to be full blown Pans and after a second MARCONS infection in October, is taking a very long time to recover.

 

Only you know what's best for your child, especially since he's a teen. Neti pots can be tough and treatments can be hard for a teen who just wants to be like everyone else and who wants to assert his independence. But he might be playing roulette in this case. I don't know that irrigation is your only option. As I said, a nebulizer helped my daughter and she's recently had success with a spray that's similar to BEG but uses clindamycin not gentamicin and also includes an anti-fungal. BEG spray stings. Her concoction doesn't. So I don't know that you need to follow Shoemaker's protocol to the T (tho he'd disagree of course). You have options. But some sort of treatment that your son can get on board with might be worth pursuing.

Edited December 30, 2015 by llm

[wisdom_seeker]

Wow! You're a fount of information! Thank you!!! Do you happen to have the reference to that article?

 

And, I explained the BBB to him and have him irrigating again. And using a nose spray. Thank heavens he's not an "I know best" sort of teen.

 

After the New Year's I can take my son to our sinus specialist for an endoscopic sinus culture. We did one in Oct with a local ENT, which was negative, but then Amy Smith found the MARCONs. Ds. Vaughan and Purkey at Cal Sinus do only rhinosinusitis, and they do a more thorough endoscopic exam & culture.

 

Here's what puzzles me now .... MARCONS are described as slow-growing commensal, non-infectious staph, so a regular sinus culture wouldn't grow them, right? Or would grow them, but because they'd be something like S. epidermis, would simply describe them as "normal flora"?

 

If possible, Dr. Vaughan treats sinusitis like ours with a nasal nebulizer he invented for spraying topical Ciprodex, which also isn't irritating, (but there's no antifungal). Is yours a compounded liquid or something that you mix yourself?

 

And, how did you find the mold exposure? We have a mild musty smell in our semi-basement, possibly from condensation against concrete blocks (we'd done major remediation 8 years ago when we bought the house, so there's perimeter drainage at the foundation, but includes a storage area behind doors that may be the source, even though we keep one of the doors open.

 

And with my son in HS, who knows if he was exposed to there. In fact, his PANS was after the 2nd day of school this August, so ....

 

We're in Nor Cal, so there wasn't rain in the summer. However,.... what about the room AC in one of the portable classrooms he was in? After it had sat closed up for three weeks, then got turned on when the teachers started prepping. With all the sinus infections he's had, he might not be able to smell mold like I usually can.

 

Well, school will be starting again next week, so I'd better be figuring this out.

[wisdom_seeker]

Oh, BTW, my son has allergies to Sulfa and clindamycin, so that one's out. But when I had chronic sinusitis years ago we did some gentamycin irrigations, which worked wonders. Still I worry about what if we induce resistance to gento whenever I go to such an nth generation drug.

 

Hmm... will the MARCONs report list which staph(s) were found and what they were resistant to? I should get that before going to our sinus guys.

 

Clearly I'm sill pretty new at this. But trying to learn as quick as I can.

 

Thanks again for all the info, sanity-check, and ideas for options.

[LNN]

Here's the link to the paper https://www.jci.org/articles/view/80792/version/1/pdf/render

and a summary

 

Researchers have discovered how immune cells triggered by recurrent Strep A infections enter the brain, cause inflammation, and may lead to autoimmune neuropsychiatric disorders in children, including PANDAS. Children with PANDAS exhibit high levels of anxiety, motor and vocal tics, obsessive-compulsive behaviors and a host of other symptoms that often appear “out of the blue” or increase dramatically, seemingly overnight.Their study found that immune cells reach the brain by traveling along neurons that originate from the nasal cavity.

 

This study explains, for the first time, exactly how upper respiratory infections can trigger both physical and neuropsychiatric symptoms.

 

According to the study’s co-leader, Dritan Agalliu, PhD, at Columbia University Medical Center, the Strep A bacterial cell wall contains molecules similar to those found in human heart, kidney, or brain tissue. These “mimicking” molecules are recognized by the immune system, which responds by producing protective antibodies. But because of this molecular mimicry, the antibodies react not only to the bacteria but also to the body’s own tissues. The molecular mimicry process has been well researched by others. But previously, scientists didn’t understand how these autoantibodies would gain access to the brain, because brain vessels form an extremely tight blood-brain barrier. This study answers that question.

 

Researches have known that recurrent Strep A infections trigger the production of immune cells known as Th17 cells, a type of helper T cell, in the nasal cavity. But it was unclear how these Th17 cells lead to brain inflammation and symptoms such as those seen in children with PANDAS. Through this study, Drs. Agalliu and colleagues found that bacterial-specific Th17 cells move along the surface of olfactory, or odor-sensing, axons that extend from the nasal cavity through the cribriform plate, a sieve-like bone that separates the nasal cavity from the brain. From there, the cells reach the olfactory bulb in the brain, which processes information about odors. The Th17 cells break down the blood-brain barrier and enter the brain,, allowing autoantibodies and additional Th17 cells to enter the brain, causing neuroinflammation.

In addition to illustrating how PANDAS occurs, the study also validated some of the experiences many parents have had regarding their PANDAS children:

• Strep A is not the only trigger – Parents have often reported that infections other than Strep A seem to trigger PANDAS symptoms. This feedback was so abundant that researchers proposed making PANDAS a sub-set of a new, larger category called PANS – Pediatric Acute Onset Neuropsychiatric Syndrome. Unlike PANDAS, PANS does not associate the onset of symptoms specifically to a Strep A infection. Dr. Agalliu’s study shows that Th17 cells persist in the brain for at least 56 days after initial infection, even when nasal tissues no longer show signs of an active infection. “Several other bacterial and viral pathogens, including influenza virus, mycoplasma and Staphylococcus aureus (nasal staph infections) induce robust Th17 responses and could also play a role in an exacerbation of behavioral symptoms in children with PANDAS if autoantibody levels are primed by previous (Strep A) infections.” (pg 11 of article).

[LNN]

I don't have the MARCONS lab report in front of me and don't remember if it lists the exact type of staph - I want to say it doesn't. But it does give you a list of antibiotics and lists whether the staph is Resistant, Sensitive or I (which I can't recall the wording but means somewhat sensitive but not completely). I don't know if a regular lab culture would reveal the same infection - I know it's always taken a minimum of 2 weeks to get results. The fungal report takes even longer. If your sinus guts are open minded, they may be willing to do a slow growing culture. I'd certainly also ask for fungal culture.

 

You mention a nebulized formula that uses cipro - cipro causes horrible side effects for my daughter and she too is allergic to a number of abx (penicillins and cephalosporins in her case). In Nov. the FDA voted to change it's position on cipro and related abx and now urges extreme caution and suggests using alternative abx for most situations. Gentamycin also has a serious risk profile and can cause hearing loss. So just be very careful. Although literature suggests that abx delivered in a nebulizer aren't systemic, that they stay localized in the sinuses, that doesn't seem to be my daughter's experience. Have a detailed conversation with the prescribing doctor and make sure you know the risks of any medication before you start using it. Cipro and gentamycin side effects can be permanent.

 

We've used two different approaches. We've used a compounded powder that we mixed with saline and then neublized it, and we've used a liquid spray. The nebulizer seems to penetrate the upper sinuses much better but it can take 20 min, twice a day and after months, can become hard for a kid - makes them start to think of themselves as "always sick". The spray only takes a few seconds and is easier on the psyche, but seems better for less invasive or less chronic infections.

 

As for how we found the mold, my daughter would go to school on a Monday feeling great and by Wednesday would be sick as a dog, unable to go to school. During school breaks, her health would return. The school was initially cooperative but then became difficult. My daughter recovered her health over the summer but then missed 9 of the first 13 days of school in Sept. so we decided to home school this year. We've also done a great deal in our home to make sure there's no problem here ( replacing carpet with hardwood, getting rid of house plants, no mold-friendly material in the basement like cardboard boxes or fabrics, de-humidifiers and testing). Your best bet would be to put absences or flares onto a calendar to look for a pattern.

 

In your other post, it sounds like lyme might also be a possibility. It's hard to tease out mold vs. lyme vs. marcons vs Pandas. Between my two kids, we've dealt with all of it but it was a process of whittling it away. See if Amy will order C4a and C3a blood tests. Shoemaker feels that C4a is indicative of mold and C3a is indicative of lyme. Also talk to her about doing an Igenex lyme test. Sometimes, it's more than one hurdle in your way.

[wisdom_seeker]

Thanks! I will talk to Amy about the C4a and C3a, and Lyme etc. I understand about the possibility of multiple hurdles co-conspiring against his health.

 

And talk to her about the nebulizer. What are the ingredients you had compounded for it, and for what indications? DS might be OK with it, esp if it does not burn like the BEG spray, and esp. if he can watch TV or play on the computer while he uses it.

 

Since it's a holiday, so far I've only I talked to DS16, and apparently mold and water damage had been an issue in multiple of their portable classrooms last year.

 

Of course he's not been in classes enough this year to find out, but he was pleasantly surprised and impressed when I told him that that isn't acceptable, and that I would talk to the principal.

 

That IF there was a musty smell in one of the classrooms, AND either he tests positive for mold or, like your daughter, has a worsening of symptoms with exposure, I will go to his principal and say that he just cannot be in those classrooms. Perhaps it should simply be enough if there's a musty smell, independent of other proof of damage to him?

 

I think the school will understand, though I don't know what they can do, and how quickly. It's a health hazard, but it's a small charter HS, so they only have one 1th grade Chem classroom, one AP Lit classroom, for example.

 

They have been impressive so far -- and they are spending significant money for his school psychologist, behaviorist and other IEP support; I'd be happy for them to redirect some of that to mold remediation instead. If only it were that simple.

 

And now I'll get off the computer and investigate our basement.

[wisdom_seeker]

 

 

[LLM] So if your child has Pandas already and now has a resistant staph infection in his sinuses, then it seems like the stage would be set for a Pans flare if the MARCONS goes untreated. ... Neti pots can be tough and treatments can be hard for a teen who just wants to be like everyone else and who wants to assert his independence. But he might be playing roulette in this case.

 

Thanks so much LLM!

 

I talked over with DS16 what you wrote, and why the irrigations and sprays are important, and the last few days he's been doing them religiously. With only token complaints, despite how much the BEG spray and throat spray burn.

 

He's a good kid. And perhaps also more able to deal with stuff now that the prednisone burst reduced some of his anxiety and other symptoms.

 

 

[LLM]

I don't know that irrigation is your only option. As I said, a nebulizer helped my daughter and she's recently had success with a spray that's similar to BEG but uses clindamycin not gentamicin and also includes an anti-fungal. BEG spray stings. Her concoction doesn't.

 

I'll definitely talk that over with Amy.

 

Also I read that pre-treating with a Xylitol spray for a week can reduce the stinging, so we'll try that as well. Might be that the Xylitol helps by reducing the bacterial/viral load already, and so reduces the inflammation, but maybe there's another effect.

[LNN]

Our nebulized formula was to treat MARCONS from confirmed mold exposure (using the diagnostic tests listed on www.survivingmold.com). It was a compounded powder of dexamethasone, clindamycin and itraconozole. The clindamycin was chosen from the list of effective abx from the lab that did the MARCONS culture and we used that one due to her allergies to other abx. You could certainly opt for a different one based on your own results (tho I seriously caution against fluoroquinolones and would use gentamycin only if abx with lesser risks weren't an option). Just prior to a nebulized dose, we'd dissolve the mix into 5 ml of saline. And we used the pediatric mask that came with the nebulizer as a way to deliver the mist into the sinuses. She was able to watch TV or be on her computer during the treatment but had to type with one hand or turn the TV up to hear it over the sound of the nebulizer. It took approx 15 min per session.

 

Our nasal spray was also compounded and had fluconozole, clindamycin and edta for films. This was formulated using another MARCONS swab for bacteria and fungus.

 

We use a neti solution that has xylitol in it and also have a xylitol spray. Not sure I've seen any great results but it probably doesn't hurt. But you might want to google how xylitol is made. Although it's a naturally occurring compound, the chemical processing they use to turn it into a mass produced item may linger in the finished product. Not saying not to use it, but reading about the processing was eye opening for me.

[nitshel]

wisdom_seeker, llm - pardon my naivete but where does one go to get a MARCON test done? Can a regular doctor order / do the deep nasal swab - or does one need to go to an ENT specialist?

[wisdom_seeker]

Any MD can request a MarCONS collection kit and follow the instructions. However you need a doctor who will be careful to keep the swab from contacting the mucus membranes at the front, and pay attention to how deep to go and how much to brush the membrane.

 

We had it done by a Lyme/PANS doctor. I have never had a general ENT or internist suggest these. It's not a term used generally, and no consensus that this is important, so 3-week nasal cultures are not standard. But it's not completely crazy.

 

Here's more information on MarCoNS, the theory, and a few references that gave it (to me) enough plausibility, though they don't at all prove that MarCoNS are the culprits in PANS.

 

MarCoNS is a name used by Dr. Shoemaker to describe slow-growing multi-drug-resistant COag-Negative Staph found deep in the nasal cavity, which he believes cause chronic illness. A prominent member is S. Epidermis, which is found everywhere on our skin, outer part of the nostrils, esp. armpits -- and is considered to be benign except when it colonizes an indwelling "foreign" object, such as a catheter, mesh, implant.

Since everyone has S. epidermis and other such "benign" Staph, most regular MDs will likely dismiss this, and treat this as normal flora from the front of the nose or skin. And that since 20%+ of people harbor MRSA, finding multi-drug-resistant Staph is no big deal. The trouble with S.epidermis and other coag-neg staph on mucus membranes that most of these can form a biofilm, and may cause low-grade inflammation, secrete toxins, and trade resistance genes with other species of Staph (such as S. Aureus).

 

Dr. Shoemaker is a fringe doctor, not an utter crackpot, but .... he has interesting theories and protocols, but NOT not rigorous studies, no pathology/immunology collaborators, no clinical trials. He is revered in some circles, and reviled by many. Years ago he found mold in buildings as a source of chronic illness. Now he's got a complex protocol for chronic disease that starts with eradicating mold, and includes a bunch of other steps to get at these persistent infections, methylation issues, etc. (I may have it a bit wrong; it's been a few months since I looked him up). (Note: There was a lawsuit against him, which he lost, and was forced to retire from active practice so now he has a company instead. The problem is that there have been no clinical trials of his protocols, nor even carefully done case series to substantiate his theories, e.g., that that nasal MarCONS are associated with marks of inflammation, BBB break-down (even in rats), etc.... I take his pronouncements with a mound of salt. I don't dismiss all he said. But I try to find well-done studies that back what he writes.

 

What convinced me that MarCONS are worth treating were two studies. First, a 2010 publication showing that S. epidermis (normally considered to not produce toxins, unlike S Aureus), actually does produce a potent toxin against leukocytes, just not in as large an amount.

 

And, second, a more damming article: A study of 30 tissue samples removed during surgery for chronic sinusitis, in which 97% had bacteria, and 23 of 30 had biofilms.
37% of different strains found were those of Coag-neg S. epidermis.(The next biggest variety was of, E. Coli with 10% of the 62 strains. Of the 62, 58 strains were cultured, and "only" 29% strains were biofilm forming strains. However, 23 of 30 of the deep nasal mucosal samples showed biofilm formation, with destruction of the epithelium, ranging from disarrayed to absent cilia. (Scanning electron microscopes were needed to identify biofilms, which is why that's not a normal test ).

 

So, if the MarCoNS are only found on a 3-week culture, they must be slow-growing, and slow-growing staph are often ones enveloped within biofilms, hidden from the body's immune system or antibiotics, but able to release toxins to make their homes more hospitable. That is the logic.

 

Lastly, for anyone who wants to go deeper into the effects on local immunity and activation/inflammation, and on the complexity of "what causes" chronic sinusitis,

 

PLoS One. 2015 Aug 14;10(8):e0136068. doi: 10.1371/journal.pone.0136068. eCollection 2015.

Association of Mucosal Organisms with Patterns of Inflammation in Chronic Rhinosinusitis.

Chalermwatanachai T1, Zhang N2, Holtappels G2, Bachert C3.

Their conclusion is that it is not any particular set of bacteria, but likely "dysbiosis", an imbalance of the normal set of bacteria that results in an overgrowth of one or a few types, [and thi density is what allows there to be enough to initiate a biofilm]. Which suggests that even a powerful spray like BEG may only be a part of the solution; that one also needs to re-establish a good broad microbiome. But how?? I don't know.

 

Am J Rhinol Allergy. 2012 Mar-Apr;26(2):104-9. doi: 10.2500/ajra.2012.26.3718. Epub 2011 Dec 16.

Biofilm formation and Toll-like receptor 2, Toll-like receptor 4, and NF-kappaB expression in sinus tissues of patients with chronic rhinosinusitis.

 

Laryngoscope. 2013 Oct;123(10):2347-59. doi: 10.1002/lary.24066. Epub 2013 Apr 1.

Use of topical nasal therapies in the management of chronic rhinosinusitis.

Wei CC1, Adappa ND, Cohen NA.

[LNN]

Seeking - to add to your line of thinking...The latest research study on Pandas out of Columbia Univ. http://www.jci.org/articles/view/80792

does show that staph is one of the bacteria that can trigger PANS (about midway thru the paper). It also shows how the path thru the BBB is thru the olfactory bulb. So chronic sinus infection does become a likely culprit for a PANS flare.

 

I'm not a fanatic follower of Shoemaker, and it's true there are no robust studies (but I hate when I see in some mainstream write "there are no clinical studies to support xyz - because no one will fund a clinical study unless there's a profit potential of a drug at the end of the study). So a valid mark against him but one that I don't use as grounds to dismiss an idea either. He does have a large database of patient responses, which are obviously biased but probably have merit for a certain population of patients. He has published some peer reviewed papers and does seem to have some degree of evidence-based defense of his arguments. Some of what's on his website has been immensely helpful for my daughter's health. But I do agree you have to take it all with an eye toward balance.

 

If you do find info an re-balancing sinus health, please share. Sinus health is my DD's nemesis and our MARCONS treatments have been helpful but not curative.

Edited January 24, 2016 by llm

[nitshel]

"I have never had a general ENT or internist suggest these. It's not a term used generally, and no consensus that this is important, so 3-week nasal cultures are not standard."

 

And therein lies the crux of the problem wisdom_seeker - finding a doctor who is willing to think a little outside the box. The fact that much of Shoemaker's theories have no evidence-based outcomes does not help either.

 

I'm not sure if it's even worth taking an appointment with a "regular" ENT - we are going to ask out current LLMD about this, but are not holding our breath....

 

Many thanks to you and llm for all the great info ...much appreciated. We are doing the nasal rinses with xylitol - not sure how long we can sustain it though...