Week of May 28, 2024

1/ Exercise, aerobic

Q: I would like to begin an exercise program to help me recover quickly. Is this a good idea?

A: An exercise program, prior to initiating the Shoemaker Protocol™, will not benefit the patient and can often make things worse. Here is why:

In the chronic inflammatory response syndrome, invariably there is an excess of inflammatory compounds that will reduce blood flow in the smallest blood vessels.

This so-called capillary hypo-perfusion reduces delivery of oxygen in the capillary bed. If there is reduced oxygen delivery, muscles being asked to exercise quickly run out of oxygen, thereby exceeding the anaerobic threshold. When the anaerobic threshold is exceeded, there is invariably a breakdown of protein into amino acids to be used for fuel as the glycogen reserves are wasted with a 95% inefficiency converting sugar into ATP (energy) molecules. When there is reduced oxygen delivery, muscles quickly starve. Glycogen stores in the muscles, normally used as a secondary source for longterm energy, are also used inefficiently.

This leads to fatigue, muscle cramps, and shortness of breath. For some patients, walking up a small flight of stairs can leave them completely out of breath. Others may notice a more gradual decline in their endurance and ability to exercise over time. Even when a patient is recovering, too much strenuous activity can make recovery more difficult.

For the CIRS patient this means avoiding exercise that exceeds the anaerobic threshold.  Exercise must be gradually introduced at the proper time during recovery, and slowly and methodically. Those who attempt to do too much, too quickly, will experience the “Push and Crash” effect. Feeling good one day and trying to exert yourself beyond your capacity will result in exhaustion and muscle soreness often for several days.

Your CIRS Practitioner can guide you in an exercise prescription to meet your individual needs when the time is appropriate.

The General Exercise Guidelines include:

Exercise is to be done daily, no exceptions.

Start with 5 minutes of walking or exercise bike with no incline and resistance.

If tolerated well, add 2 minutes to the exercise time daily until you can tolerate 15 minutes.

At this point, gradual muscle training can be started, usually beginning with abdominal exercises. Begin at no more than 5 minutes, and gradually increase, then add more muscle groups as tolerated, and as guided by your practitioner.

After a full muscle and cardio exercise program is tolerated in a 45 minute time period, then resistance can be added to each individual exercise, one at a time and gradually.

Daily incremental increases are the key, which will increase a substance known adiponectin, a hormone that regulates fat metabolism and helps you burn fatty acids much more effectively. This dramatically helps energy available to your muscles.

Within 2 or 3 months of daily progress you will see a dramatic improvement in exercise tolerance. Skipping a day of exercise will slow your progress significantly.

For best results, always do the program with the oversight of a Shoemaker Practitioner, who can tailor the program to your recovery and progress levels, and help you determine your anaerobic thresholds. They are also an accountability partner, helping you stay consistent and on track. 

For more information, please take a look at Chapter 17 in Mold Warriors and Chapter 12 Surviving Mold.

I also suggest you read the chapter entitled “Follow that Oxygen” to help some of this jargon physiology translate into real world reasons why exercise must be introduced slowly, gradually and deliberately.

2/ Exposure, living on a boat or camper

Q: I am becoming frustrated by my inability to find a residence that is safe for me now that I know what 4-3-53 means to people with chronic illness. I am considering living on a fiberglass boat. Please comment.

A: Living in a boat will not cause adverse health affects just by being outdoors. Given your susceptibility based on your HLA, please be as diligent as possible looking for evidence of cellulose-based materials within the structure of the boat that could grow mold. Many boats will have compartments with reduced airflow below decks which create an ideal environment for Aspergillus penicillioides. Be sure to assess ventilation of compartments in your boat before purchasing the craft. People of the Chesapeake Bay area often refer to boats as “a giant hole in the water into which they throw money.” I would also suggest that you read the chapters about extreme avoidance by Erik Johnson (in Mold Warriors and Surviving Mold) to see how seemingly trivial amounts of mold in his converted camper made him ill.

3/ Extreme avoidance

Q: Regarding the use of pure avoidance as employed by Erik Johnson and others, what do you think is the mechanism for his improvement?

A: While I certainly have no basis to disagree with what Erik has repeatedly documented and his story remains compelling as to the true source of Chronic Fatigue Syndrome in Incline Village, Nevada. I do not have the benefit of laboratory testing on Erik to clarify mechanisms of his improvement. Given his extreme sensitivity and his multiple relapses over the years, I suspect you will find that there are elements, particularly in genomics, of his illness that are yet untreated

4/ VCS findings

Q: I am diagnosed as having fibromyalgia. I was hoping to find someone near by who could read the VCS test for me.

A: The VCS test done on the Surviving Mold website provides a pass/fail report with every test. A fail indicates the presence of CIRS and follow up diagnostic testing and treatment is necessary. There is no need to travel to see a doctor when the test result is provided, but if you do have a fail, bring your results to a Shoemaker Protocol™ Practitioner or to a practitioner who will help you with the Protocol testing process. There are lab order sheets for your attending physician and resources located on this site.

If you receive a pass, watch your symptoms over the next two weeks and if they are not subsiding, do the VCS test again and compare the results. If the noted categories are showing an increase, taking the next diagnostic steps with a Shoemaker Protocol™ practitioner or specialist who’ll help manage the Protocol testing process and your case is recommended.

VCS RESOURCES:

If you have more questions about the VCS test, you may be interested in our VCS FAQ section, or see the VCS information page. You can also submit your questions to this portal and/or to the office.

5/ Flu shots and CIRS

Q: I have been diagnosed with having silicone implants creating a biotoxin illness. Should I get a flu shot?

A: Without knowing your case it is impossible to make reasonable suggestions other then to discuss the general risks of a flu shot versus benefit with your physician and with your case particulars. Flu shots are widely used for patients independent of underlying inflammatory problems. We have no data showing that even the 4-3-53 or 11-3-52B people have an increased incidence of adverse effects compared to control populations following flu shots. We know that individuals with ongoing innate immune activation and abnormalities in 82 antigen presentation are theoretically at risk for absence of a protective antibody response to a variety of vaccinations including influenza. High-risk groups including those with indolent malignancies such as CLL should be vaccinated without question, in my opinion. Individuals over the age of 65 with respiratory problems should be vaccinated. Simply having an innate immune response syndrome does not mean that you are exempt from getting a flu shot.

That being said, influenza vaccinations can be quite complicated as the flu vaccines available in recent years have only covered 10%-40% of influenza strains seen in the U.S. at any given time. Use of flu vaccine for an unknown type of influenza is difficult to justify. Given that there are separate influenza preparations available, I think it makes sense to wait until there is an outbreak of flu in which the serotype is identified before automatically requesting a vaccination. If you are in a high risk group, then proceed with the vaccination.

6/ Food intolerance, fermented or moldy foods

Q: Since I have been diagnosed with mold illness I have suffered numerous gastrointestinal problems. I have been diagnosed as having irritable bowel, inflammatory bowel disease, food allergies and small intestine bacteria overgrowth. Despite all these diagnosis I would like to add fermented food to my diet which therefore involves eating mold. Please discuss.

A: I am certain that you have had evaluation that confirms small bacteria overgrowth and inflammatory bowel disease. These conditions have objective parameters that are distinct from irritable bowel syndrome that has none. Presence of food allergies is a diagnosis that I have seen that is fraught with both under- and over-diagnosis. We know that MSH has a lot to do with maintaining mucosal integrity of both small and large intestine. Absence of MSH leads to a long series of bowel problems that often will be diagnosed incorrectly as instead being one of a series of different illnesses. Despite the attempts by some in the mold litigation defense team that says that ingestion of fermented foods is the source of illness acquired following exposure to the interior environment of water-damaged buildings, there is absolutely no evidence to support that idea. I am aware that many mold practitioners feel that dietary restrictions on putative fermented foods make sense but I have never made a recommendation that people routinely avoid beer, wine, bread (of any kind), mushrooms, blue cheese or any other food stuffs. I go back to my basic directive, “show me the data” that supports concerns regarding presence of mold or mold products. Simply stated, if one does not feel well after eating blue cheese, then avoid it. If one is saying that all mold patients must avoid blue cheese then that recommendation needs to be validated by more than just symptoms. If one has gluten intolerance, avoid gluten; if a person has food protein induced Enterocolitis (FPIES) then avoid those foods that aggravate the FPIES. The physiologic problems that I see most often related to gastrointestinal symptoms are bile acid reflux (which is incredibly common) together with the surprisingly increased incidence of gastroparesis in mold patients. Unusual malabsorption is a common concomitant of MSH deficiency.

Having said all of this, given the fragile nature of your GI tract, I would encourage you to introduce foods one at a time, and even then no more frequently then one new food a week so that you can clearly see whether you have problems with the food or not. Only you will know; your physician is not in a position to tell you what your reaction to a food will be. I relay on patient reporting and not some lab test to tell me if a person has problems with food. Fortunately, we are initiating research studies that will employ genomic testing to answer questions about putative mycotoxin-containing foods on health. We will look at the tantalizing possibility that probiotics will show genomic anti-inflammatory properties.