Volume 1 FAQ

85 Total Items

Question Volume 1

I have several patients in one family who lived over an "earthy smelling" crawl space for 7 years and had water damage in part of their home. They have been in a new location for 3 years now that seems mold-free, but all are still having health problems that I suspect may be from biotoxin illness. In particular, the 39 year old mother has developed debilitating chronic fatigue, myalgias and arthralgias, and chronic daily migraine, all of which started when she lived in the WDB. She also suffers from severe allergies and asthma. Two of her three sons are on the Autism Spectrum and have allergies/food sensitivities as well as migraines - ages 5 and 10. The other son has allergies and asthma - age 7. All 3 children were born while the family lived in the WDB.   1. I was wondering what you would recommend for basic screening labs that would be a tip off for Biotoxin Illness for this family.   2. Also, do you have any supporting paperwork for pre-approval and/or to appeal a denial for HLA testing?   3. Finally, this family has laminate flooring. Would an ERMI be accurate on this type of flooring given the minimal amount of dust that would be accumulated in the vacuum?

Answer

The basic screening labs for pediatric cases include HLA, MSH, TGF beta-1, MMP-9, antigliadin antibodies, anticardiolipin antibodies and CD4+CD25++CD127 lo/-. Also the C4a, understanding the C4a must be done at Quest and not LabCorp. LabCorp does not do the CD24+ CD25++127 lo/- assay. “Earthy smelling” homes are like art in a sense that beauty is in the nose of the beholder. I suggest ERMI testing. Please contact this office for the template letter we use for HLA. ERMI testing in homes with hardwood floors or non-carpeted floors are best done by Swiffer cloth used on surfaces such as a top of a shelf, top of a door frame or top of a window sill. Please check with Mycometrics regarding their protocol; they usually want 10 surfaces to be collected with Swiffer to be sure enough dust is present.

Question Volume 1

Does every patient with a positive culture get BEG spray plus Rifampin? Or do you start with BEG and add rifampin if no improvement seen? I have a patient who has a positive culture but would prefer to not use any antibiotics.   PS. I notice that you do not talk much about the psychology of handling mold patients with anger and disinhibition. Do you have any hints?

Answer

We only treat those patients who have more than one class of antibiotic resistances. Commonly we will see penicillin resistance alone or macrolide resistance alone. Don’t treat them until we can prove they are actually making biofilm. For those intolerant of rifampin, and make sure you dose in AM with food, we use BEG spray two sprays each nare three times a day. Mood swings are common; these are the most difficult patients you and your staff will ever treat. They can drive you crazy if you let them. Follow their line of thinking, but cut it off when the logic starts to fail. Don’t let them get away with assumptions and wacko medicine, they will try. Caution giving them unlimited access to your phones and you. You can (and must) set boundaries just like you would with an untrained puppy. When their brains are getting back to normal, they will thank you. The MR spectroscopy really helps here to show reduced oxygen delivery with consequent suppression ratios of glutamate to glutamine. As far as disinhibition goes, the role of reduction in volume of dopaminergic pathways in the caudate nucleus is showing a tight correlation with such behavior. If you aren’t doing NeuroQuant on your brain MRIs (takes 10 minutes) you really should be.

Question Volume 1

How are biofilms detected? So far every patient who has sent a nasal swab has received a positive culture, and only one has less than two resistant strains. I talked to the lab and they seemed to think everybody is positive for coagulase negative staph. But just to clarify everyone who has two resistant cultures is treated for at least two months with BEG spray and Rifampin 300mg po bid. Those who have less than two resistant strains are not treated unless biofilms are detected?

Answer

We treat all multiply antibiotic resistant coag neg staphs for one month. The DLM does not have the results on 9000 cultures (I do); their opinion is not going to change our data 23 base. Having said that, about 80% of cultures are positive and about 60% of those are methicillin resistant organisms, so the culture can’t be skipped. It is not the culture that is resistant; it is the antibiotic resistance pattern of the individual organism. The new lab that will do biofilms for me (it has been a while since we have had a biofilm assay) does them in lots of 96.

Question Volume 1

Also, is it possible to use a topical anesthetic for the nasal swab or will that impact the culture?

Answer

I have never used the topicals. I don’t see anything about a topical that would affect biofilm-formers. We’ve been trying to eradicate them with just about everything else for years! With a small bit of patient preparation and some experience in doing the culture, it is over in 7 seconds.

Question Volume 1

What to do for migraines that have become excruciating and for the first time include intense pain across the nasal bridge after starting Rifampin and BEG spray combination? Have held the BEG spray pending notification from you regarding possibility of modulating dosage or any other option to improve tolerability. There was a brief re-exposure to mold in the basement during start-up of remediation with placement of air scrubber.

Answer

Though not common, there can be die-off when MARCoNS are being eradicated. I would track the VCS scores in row E and then D, looking for a fall. Also, MMP9 will rise within two days of onset of symptoms. If that is the case, hold the BEG for a few days, beginning to pre-treat with omega 3 or Actos, with the no-amylose diet, for five days before returning to the BEG spray (without rifampin). Most really bad headaches in these patients are rarely migraine and much more commonly are volume depletion with high osmolality.

Question Volume 1

Patient had large amount of coag neg. staph approximately two and a half months ago. She was treated with BEG spray 3 x per day and rifampin 2 x per day for 6 weeks. Retest of nasal culture shows continuing large amount of staph coag neg. Resistance now is penicillin and erythromycin. 2 1/2 months ago resistance was penicillin and clindamycin. What would be recommended protocol now and for how long?

Answer

I have used the BEG spray each nare TID and rifampin 600 once a day in AM with food for years. Now I just start with double dose of the BEG spray. I would say your organism was resistant to penicillin and macrolides and not believe it was a new one despite the listed differences in macrolide resistance. This is an organism that we should study with biofilm production assays as it is distinctly unusual to find resistance to BEG/rifampin. I would also look at the potential for carriage of a reservoir in the nose of a dog. The few times I have had such absence of clearance, there was a family pet that was welcomed into the patient’s bed. (I think I may have done more nose cultures in dogs that the average family doc.) The carriage is not in cats, a finding that surprised me. I would go to BEG two sprays TID in each nare, with a re-culture in about 2 weeks while on Rx. I don’t like to use orals for these organisms, but in the past I used Bactrim (one BID) and doxy (100 mg BID) with good success.

Question Volume 1

When doing the nasal culture for MARCoNS, do you need to use a special culturette for the nose? Will an ordinary culture swab do? Do you just go in on one side, one nostril? Can I send my specimens from California to the lab that you use?

Answer

We use a standard red topped Copan swab for nasal cultures. Don’t use the alginate swabs. I do just one side. Yes, see the previous answer for contact info for DLM.

Question Volume 1

Is there a CPT code that you have found which would be appropriate for obtaining the nasal culture swab? I need to charge patients something for doing this and mailing it off, but it would be good if they could get reimbursed by their insurance.

Answer

I have not billed though others use the procurement code. We usually send our cultures in batches. The sample is stable for a week or even more in the culturette, so my cost to mail is not large.

Question Volume 1

I am not clear about what qualifies a nasal culture result as positive for MARCONS. One recent result was resistant to erythromycin and penicillin. Is that considered 2 different classes of antibiotics or one? What about resistant to cephalosporin, penicillin and methicillin? Another was resistant to penicillin and intermediate to Levaquin. Are all of these considered positive? Does the amount of growth enter into it?

Answer

Nasal cultures need to show presence of coagulate negative staph to be considered positive. A MARCoNS will have resistance of at least two separate antibiotic classes present. Simple resistance to penicillin alone or no antibiotic resistances aren’t to be considered as a positive MARCoNS culture. Resistances to penicillin and Levaquin (quinolones) both make the culture positive. The amount of growth is irrelevant in that this is a blind culture and there is no way to insure that this was a quantitative culture.

Question Volume 1

A patient has several exposures to WDB, history of asthma, allergies, Lyme, disabling daily migraines, fatigue, weight gain, body aches & extremely poor sleep &exercise tolerance ?pulmonary hypoperfusion? We have been getting labs and medical records, but yesterday after a large blood draw she experienced “the worse deep muscle pains, excruciating”? -Up all night, still bad. She started CSM 2 days ago. Finished your training videos at 0400 this AM–is this an intensified Herxheimer Rx due to her past hx of Lyme or worsening capillary hypoperfusion? Is there anything to treat Herx Rx besides the John Wayne approach? I have stopped the CSM as you said on the DVD. Now Switch to Welchol? CSM cream? Add Actos? Did I understand you to say Cialis and Viagra or Trental improve capillary hypoperfusion? I understand we are not to skip steps, so I am doing nothing but TLC until you say so, but I don’t even know if I’m on the right track. What is back so far:   Failed VCS, MMP-9 =798; MARCoNS + with 6 resistant Antibiotics listed by DLM Penicillium species ID’d Gliadin (AGA) IgG = 25 (<11) Leptin 21 HgbA1c 5.2 Quest Lyme titer WNL; previous lab was Igenex (treated by Dr. Crist who you mentioned in your book.) So appreciate your help on this.

Answer

I am not clear here. The CSM was started before the draw? We usually draw blood and then start CSM. If there is an intensification reaction to CSM, the VCS score will show a fall in Column E followed by a fall in column D. MMP9 will rise the Day of intensification which usually occurs after 6-10 doses of CSM (need time for cytokine release and transcription for MMP9). Actos does beautifully to block intensification if started 5 days earlier as a run-up to CSM use. In order to get maximum benefit from the Actos, the patient needs to be off foods that are high on the glycemic index; my “no-amylose” diet is one I have used for 20 years. The weight loss book, Lose the Weight You Hate, available electronically on this website has a lot of detail on the diet.

Question Volume 1

Not intentionally, but yes. Lab work was supposedly completed 9 days ago, but lab called about need a redraw some of them so she went again. Sx are easing now. We will do the run-up with Actos and the “No Amylose diet” before we try CSM again. She is also eliminating gluten. Thanks for your help.

Answer

I only eliminate gluten for those with (+) AGA. We send off TTG-IgA on all positives almost never finding true celiac. Low MSH adversely affects gut tremendously. If a person does better off gluten and is negative AGA, I won’t disrupt what they are doing, however. It usually takes three months or so of strict no-gluten to deal with AGA.

Question Volume 1

Is there a standard dose for Actos if pre-treating before CSM?

Answer

Yes, I use 45 mg. Frequent small feedings of no-amylose foods help those who might feel woozy after the first dose. Blood sugar actually doesn’t fall too low with Actos but insulin effects can be enhanced. The no-amylose diet is in the book, Lose the Weight You Hate, found on this site in an electronic version. Given the recent concern about Actos and bladder cancer, I just can’t advocate its use any longer.

Question Volume 1

What do you consider sufficient remediation for tricothecenes? I have a patient with severe depression, migraines, fibromyalgia (narcotic rx) and panic attacks who lives in a home remediated for “black mold” last year. No one ever informed her that black mold could cause physical illness (this is a true story). I am of course working her up for biotoxin illness. However since nothing was done for the furniture or clothing during the remediation I am assuming that tricothecenes can still be present. What do you think?

Answer

I don’t assay for mycotoxins as there is no way to say that any one kind of inflammagen can cause the CIRS-WDB. I shoot for ERMI < 2. Trichothecenes, or any mycotoxins, must not be considered to be the sole or primary focus of Rx. Don’t forget all the other “baddies” in the air. The entire “chemical stew” found inside WDB is much more diverse. I use a “HERTSMI-2″ value of < 10 as “likely safe,” understanding that we can’t measure everything. This is a new roster (see the PP on this subject on the site) that is a derivative of ERMI. It is far more accurate than ERMI alone. Please take a quick look at the appendices in Surviving Mold that review how to clean, clean, clean after remediation.

Question Volume 1

In a dry area where the ERMI is high because mold was blown in by the HVAC, such as the floor above a water damaged basement, can items such as paper and cardboard be salvaged by HEPA vacuuming or must they be disposed of as if they had been in the basement?

Answer

Unfortunately, other than making copies of documents, I know of no way to salvage paper products.

Question Volume 1

If someone goes through remediation including sealing moisture breaches and removing all active areas of mold growth, but doesn’t do much to clean floors, walls, furniture, etc, will you see improvement in HERTSMI-2 scores compared to pre-remediation or will the scores remain quite high?

Answer

Cleaning all reservoirs of small particulates really is important, so no; I don’t expect much budge in labs if cleaning is incomplete.

Question Volume 1

If there is a 2×4 area of mold growth in an attic, do you usually recommend having all the insulation removed along with the affected area? To clarify, a patient has a moldy attic door from a roof leak. The leak has been sealed and the rest of the attic appears dry and without mold growth. In addition to removing the door, would you recommend removal of the surrounding insulation?

Answer

Use the inspection by the CIH to guide you. Usually insulation in an area of microbial growth is also contaminated.

Question Volume 1

How high can an ERMI/HERTSMI-2 be if someone moves into a new non-water damaged building but they did not know that their possessions were contaminated by their previous residence which they did not know was water damaged?

Answer

The question is not clear to me. Can cross contamination occur? Yes. I know of no way to judge the expected change in building indices from the data you supplied.

Question Volume 1

Do you have a sense of what proportion of your patients are unable to bring their ERMI/HERTSMI-2 scores to safe levels despite thorough cleaning, removal of contaminated building materials, and correction of moisture problems by a quality remediation company following IICRC S520 guidelines? I ask because some of the mold docs in my area say that in addition to remediation, their patients often need to have HEPA systems installed and fogging to bring levels down enough.

Answer

I have not analyzed proportion of patients that can not clean their homes. At one time I use to say that failed remediation was one word, meaning that cleaning never worked. Having said that, strict attention to precise detail is required to clean. Fogging has no role to help rehabilitate homes. Think about it. Say you have some magical fog that kills all bacteria, fungi and actinomycetes with a single application (there is no such product for sale). What will that action do to the extant fragments of fungi or bacteria? Nothing. Where does the problem with WDB come from? Fragments by about 500 to 1. What possible logic would support trying to kill what isn’t alive and then not cleaning compulsively? We are looking at the need to clean at to computer room safety for those who have HLA susceptibility. Trying to kill chemicals that are not alive is not logical. Selling such fogging products to uninformed patients is fraud in my opinion.

Question Volume 1

I have had my first patient that insurance refused to pay for the HLA DR by PCR. They are charging her $536 dollars which is a lot for her. Does this happen often?

Answer

I would ask for the reason for denial of claim. Often a code isn’t transcribed right. It might be that you need a roster of medical necessity letters.

Question Volume 1

Have you ever looked at methylation mutations (677C and 1298C) in connection with mold? Correcting methylation pathways has become popular with chronic fatigue.

Answer

No, the labs I see that do SNPs for methylation aren’t ones I have found to be reliable. I am on a list serve with a cadre of docs who love methylation models. They need data.