Week of February 19, 2024
1/ Diet considerations on CSM
QUESTION: A patient from Iceland writes that he is ill with beginning following exposure to a water-damaged building. He has been removed from exposure but is still trying to regain his health. He is starting to take cholestyramine and wants to know what more he can do? He also wants to know about his diet.
ANSWER: There is no special diet that I recommend for people taking cholestyramine with the exception that I do recommend increasing the amounts of soluble fiber as a reasonable 192 mechanism to avoid constipation. Soluble fiber (not insoluble) is found in a variety of fruits and nuts with soluble oat brain fiber possibly being the best. You do not need to avoid mushrooms, bread, cheeses, wine or beer in my opinion, also understanding that there are some patients that are quite sensitive to those items when they have a CIRS from the offenders in moldy environments.
2/. Mold allergies vrs CIRS/mold illness
QUESTION: We have found Stachybotrys in our home, especially in the shower and crawl space. I am seeking assistance and have been to see an allergist in Denver.
ANSWER: If you truly have an inflammatory response syndrome caused by an interior environment of a water-damaged building no allergist would be of any benefit to you as the illness has nothing to do with allergy. You might be surprised to see what the past history of some allergists/OccMeds at NJC has been in mold cases. The problem of CIRS is due to innate immune inflammatory events. I would recommend that you review the materials on this website, especially the frequently asked questions (FAQ Volumes 1-5) regarding diagnosis and treatment as there is a wealth of information that has been put forth. You mention your daughter has diarrhea but it is important to remember that illnesses caused by exposure to moldy homes will be multisystem, multisymptom and not just diarrhea. Your symptoms as described in your note of headaches, respiratory issues, sinus congestion, abdominal pain, aching and fatigue sound very typical of what CIRS-WDB patients have. I would
recommend that you do the visual contrast sensitivity test (VCS) on this site. The VCS will correlate your symptoms and eye contrast sensitivity to the possibility of having CIRS. It is the first testing step used in the Shoemaker Protocol™ and it will give you a printout for your physician with your results. It will also record your score so you can track progress. If you do have a problem passing that test then I would strongly recommend that you have the labs done by your doctors as described in the Shoemaker Protocol™ and in the physician resources of this site.
3/ Treatment complication; menstruation
QUESTION: Since beginning Welchol I have experienced heavier menstrual flow as well as worsening of mid cycle discomfort. Is this related to treatment?
ANSWER: Though not common, for individuals with inflammation adversely affecting the enzyme aromatase there often can be bumps in the menstrual road as abnormal aromatase is corrected back to normal. For women what this will mean is changes in balance of testosterone and estrogen which will have direct effects on menses. The difficulty in sorting out changes in menstrual flow with treatment is that this problem is uncommon. We would want to see what levels of simultaneously measured labs were (total testosterone and estradiol) at mid cycle together with first two days of menstrual flow. We would track these changes as treatment progresses, expecting normalization in several months.
4/ Physician testing and lab resources
QUESTION: A physician writes, I attended the Gordon Medical seminar and I feel one of my patients is likely to have a biotoxin illness. Who can I refer her to for lab testing?
ANSWER: We have numerous certified Shoemaker Protocol™ practitioners listed on the website. There are also many Shoemaker Protocol™ Partners, most are prescribers. We have more physicians in various stages of completion of their certification exams and hope to announce new participating physicians very shortly.
There are also Physician Resources on the site, including the necessary tests and labs. I would suggest that the patient have labs done locally with a copy sent to you. I would be happy to review the lab testing with you and offer a consultation service where I will discuss the case or any questions with you. Please contact the website and let me know how I can help.
5/ Lymes and Mold Treatment modalities
QUESTION: I need advice on what to do. I am not feeling well and I am on VIP so I stopped the medication. I then deteriorated with worse brain fog and hip pain. I decided to start treating for Bartonella without confirmation of infection. I got much worse blaming my problems on a Herxheimer reaction. I then decided to go back on VIP, stopping the Herxheimer immediately. Please comment.
ANSWER: One of the most challenging features in diagnosis and treatment of inflammatory response syndromes is separating Lyme from mold. The good news is that genomics readily shows us the way by demonstrating changes in gene activation seen in Lyme versus that seen in mold. These results are slated for publication soon. If I had the results of your genomic findings I could simply say you do or do not have Lyme disease; you do or do not have mold problems; or you do or do not have both.
Having said that, the requirements for use of VIP do not appear to be met in this case. 1) there must be a normal VCS score; 2) there must be absence of coagulase negative staph in your nose; 3) ERMI must be
will be an increase in non-specific symptoms and a rise of MMP-9 and then a fall on Visual Contrast scores in Column E following by Column D within two days of beginning antibiotics.
The Herxheimer occurrence does not confirm a given person has
Lyme disease, as biofilm forming coag negative staph will give the same die-off reaction, especially if the organism is methicillin resistant. Similarly, if MMP-9 is quite high there can also be symptoms that look like a Herxheimer reaction.
The availability of proteomic findings to provide you with guideposts to use in treatment can not be ignored. I suggest that you go back to the basics now with your physician and obtain laboratory data base to include HLA, MSH done at LabCorp, TGF beta-1, C4a
(never done at LabCorp) and MMP-9 among the rest of the tests listed in the diagnostic section of Surviving Mold
6/ Black mold treatment
QUESTION: If I have black mold sickness does it ever go away?
By black mold sickness I will assume you mean a chronic inflammatory response syndrome (CIRS). Yes, the Shoemaker Protocol™ has been peer-reviewed and published. We have an excellent track record. The most important initial steps include accumulation of the laboratory database combined with the investigation of ongoing environmental exposure.
We include Visual Contrast Sensitivity Testing (VCS) as a mechanism to follow benefits of treatment. Treatment is a defined by the step by step protocol referenced throughout the site and in the published paper on VIP. Always do one thing at a time and don’t skip
steps. Be sure to check labs after each step of intervention so that we know where we are at each step of the 11-step pathway. I urge you to become familiar with the Shoemaker Protocol™ and the materials on this website that talk about diagnosis and treatment.
You may be interested in downloading the free guide “Got Mold?” which includes a description of the 11-step Shoemaker Protocol™ and overview of the diagnosis process.
7/ Improvement rate after treatment
QUESTION: What can I expect as far as an improvement rate after use of your protocol?
ANSWER: We have looked carefully at people who did not have successful improvement with the 11-step treatment protocol. The two main sources of problems have arisen from ongoing exposure to the interior environment of water-damaged buildings and incorrect diagnosis.
As long as the labs are drawn you will have guidelines to help you follow your illness parameters as you go from one step to another. If you truly have the CIRS you absolutely must pay proper attention to detail about additional exposures in day-to-day life. While NIOSH says 50% of the buildings in the U.S. are water-damaged, there are times that I think that is an underestimate.
Now that we have VIP and can show improvement in genomics as well as improvement in volumes of structures of the brain by using NeuroQuant, we are in an era where the fundamental mechanisms that underlie this disorder can be identified and treated.
8/ Treatment resources
QUESTION: I have had multiple health symptoms since I was sickened following a Hurricane. My home developed very high levels of Aspergillus and Penicillium. I moved out and still remain ill. I have multiple lab abnormalities but as I am on disability this time, I do not have resources needed to access care.
ANSWER: If the resources are financial, the treatment protocols that I use are not expensive once you have been confirmed and are removed from exposure. You have moved, so you may want to make sure your new environment is CIRS “safe.” Also note that simply removing yourself from a contaminated environment does not resolve the symptoms of CIRS. The 11-step Shoemaker Protocol™ must be followed strategically, step by step.
Most insurance companies will cover costs of cholestyramine or Welchol. I would also suggest that you discuss your lab abnormalities with one of the certified Shoemaker Protocol™ practitioners for best care possible. If you don’t have the resources to go to in-office visits, it is possible to do much of the consultations via telemedicine options and save in-office visits to obtain the necessary labs.
The Visual Contrast Sensitivity testing and tracking system can also be done online from home.
I do not agree that avoiding treatment because of financial terms at this time is justified as your disability is bad enough; you do not need ongoing progression of CIRS to add more injury.
