Initial Case Reports From the Paradigm Change Viral Illness Survey

 

 

Article Summary:

 

* Many individuals with chronic mold-related illness (most qualifying for an ME/CFS diagnosis) reported that they experienced Covid-like illnesses during December 2019 – March 2020.

 

* Those with this type of pre-existing chronic illness were significantly more likely (p<0.001) to have a difficult time recovering from their Covid-like illnesses than those without this type of pre-existing illness.

 

* Those with this type of pre-existing chronic illness were significantly more likely (p<0.05) to report breathing difficulties, shortness of breath and lung/chest pain than those without this type of pre-existing illness.

 

* Those with this type of pre-existing illness were significantly less likely (p<0.05) to report fevers in conjunction with more severe Covid-like illnesses than those without this type of pre-existing illness.

 

* Many of those with this kind of pre-existing illness reported experiencing relapses of their Covid-like illness symptoms.

 

* Many of those with this kind of pre-existing illness reported that their chronic illness symptoms (such as fatigue, pain, headaches or abdominal pain) had remained worse even after they recovered from the Covid-like symptoms.

 

* Severity of the Covid-like illness reported in the survey has decreased as a function of date of onset (r=0.30), suggesting the possibility that emerging strains of the virus may be less virulent than early ones.

 

* No cases with onset dates in April were reported, suggesting either that the epidemic in this population already has peaked or that social distancing measurses that these people have pursued have worked very well for them.

 

* Nearly one-fourth of the Covid-like cases reported in the survey had onset dates prior to January 2020, with many of these early cases being especially severe.

 

*  While no reported treatments seem to have been curative, some were stated as having been substantially helpful by many respondents.

 

* Survey data is still being collected, with the goal of the publication of an academic journal article.

 

 

Click To Take The Survey

 

May 14, 2020

By Lisa Petrison, Ph.D.

During the last week of February, I heard from someone with chronic mold-related illness living in the Southwest U.S. who had just acquired an extremely severe viral-type illness that sounded an awfully lot like what I was reading about Covid-19 in the news media.

This person (who has since gotten much better) reported experiencing life-threatening breathing difficulties but was afraid to seek out medical care for fear of being forcibly quarantined in a moldy building or of having doctors do something to make the situation even worse.

During this same time, the press was just starting to report on the very severe illness outbreak at the Life Care Center nursing facility in Kirkland, Washington – an incident that brought to my mind the many building-centered hot spots that Erik Johnson has described as having been very moldy during the Lake Tahoe epidemic in the 1980’s of the disease that went on to be called ME/CFS.

I therefore started to wonder whether this new virus might be a particular threat to people with mold-related illness, and published a Paradigm Change blog article – called Could the Coronavirus Covid-19 Epidemic Have A Toxic Mold Connection? – on the topic on March 6.

(An AP photograph published a few weeks later showed that the flat roof of the Life Care Center nursing home in Kirkland was in tatters – thereby providing me with some evidence that my original suspicions that the building might have a severe toxic mold problem possibly had some merit to them.)

Immediately after publishing my article, I got a trickle and then a deluge of responses from individuals pursuing mold avoidance who reported that they had recently experienced unusual illnesses that seemed that they might be caused by Covid-19.

By the third week of March, so many people in the Mold Avoiders Facebook group that I run were reporting being sick with something that they suspected might be Covid-19 that virtually all discussion in the group became focused on the topic.

In order to collect more information about these individuals’ illness experiences, I launched an anonymous Covid-19 and Viral Illness Survey at the beginning of April.

A total of 111 individuals have filled out the survey thus far, with the majority of the illnesses described seeming to me more similar to what I have read about Covid-19 than to typical colds or flus.

An issue, however, is that while the majority of the Covid-like illnesses described in the survey had onset dates of January 2020 or later, nearly one-fourth were first acquired between October through December 2019, and an additional one dated back to May 2019.

Many of these early cases were especially serious and seem to be very good matches for what is known about Covid-19 (including, in the earliest case, the ground-glass opacities now considered diagnostic for the disease).

Because most of the news media at first seemed to be adamant that Covid-19 could not have been in the U.S. at all during 2019, my initial assumption when I started receiving these early case reports was that these illnesses must have been caused by something else.

More recently, news media articles – such as one from the The New York Times – have brought up the possibility that the virus might have been in the U.S. in late 2019 after all, however.

Another problem is that while I have heard personally from a few people with mold-related illness who have tested positive for Covid-19, the five individuals who had received back test results at the time they filled out the survey came up as negative for the virus.

Of course, Covid-19 testing is so notoriously inaccurate that a negative result certainly should not be taken as any sort of solid proof that someone actually does not have the disease.

Still, considering all these factors, it is hard to say with any certainty that any of the people who filled out the survey actually had Covid-19 rather than some other illness.

What I feel that I can say with some confidence, however, is that it seems that a large number of people with mold-related illness issues have during recent months experienced particularly problematic acute viral-type illnesses that are basically consistent with everything being reported about Covid-19.

If some or most of these illnesses actually are not being caused by Covid-19, and instead are due to some “Covid-doppelganger,” then that seems to me to be important enough (and confusing enough) that the situation needs to be examined in a systematic way.

In addition, since the viral-type illnesses being reported appear to have had such a major effect on so many individuals with ME/CFS and other mold-related illnesses, I would be very concerned about the situation even if Covid-19 were not currently in the news.

I therefore have decided to make publicly available all the details from the case reports that I have gotten so far, so that others can look through them and draw their own conclusions.

In addition, I am providing on this page some of my own comments about the survey results, so that others may take those comments into consideration if they choose.

Throughout my comments, I will be referring to the sort of illness that I am seeing in this patient population and that I continue to believe may have been caused in many of these cases by Covid-19 as “Covid-like illness.”

I hope that the release and discussion of these initial results will encourage additional people to participate in the survey, since it will be much easier to draw better conclusions about what may be going on with a larger data set.

Individuals with chronic illnesses such as ME/CFS, MCS, MCAS, POTS and tick-borne issues are especially encouraged to participate in the survey.

Participation by those with other kinds of chronic health conditions as well as by those without any pre-existing issues is also very welcome.

Those wishing to take the survey may do so by clicking on the following link:

https://www.surveygizmo.com/s3/5501791/Coronavirus-Survey

 

Please note that throughout this article, links to references and other useful materials are presented in the text in orange (no underlining).

I would like to offer my sincere thanks to those who have taken the survey so far, as well as to those who have helped with the development of the survey.

 

Survey Overview

A list of all the survey questions are listed on a separate page of the this website:

Read The Survey Questions

 

Participants were provided with the following instructions:

This anonymous survey has the goal of collecting information from individuals who believe that there is a possibility that they have experienced illness symptoms as a result of being infected with the coronavirus COVID-19.

COVID-19 may manifest differently in different people, depending on the level of severity and other factors.

Therefore, please go ahead and fill out this survey if you have experienced any kind of acute viral-type illness since December 1, 2019, even if you are not convinced that it was COVID-19 rather than something else.

Also, if you had an illness prior to December 1, 2019, and believe that it may have been COVID-19, please feel free to fill out the questionnaire focusing on that illness.

If you have had multiple illnesses that seem to have been distinctly separate from one another, please focus on the one that seems most likely to have been caused by the coronavirus COVID-19.

This particular viral-type illness will be referred to as the “Suspect Illness” in this questionnaire.

You may fill out this survey based either on your own illness experiences or on behalf of someone else.

Please feel free to fill out this survey multiple times, focusing on a different individual each time.

You also may update the information that you provide later on, as the person’s health situation progresses.

 

A total of 111 individuals have participated in the survey so far.

All of the data provided by each participant in the survey was summarized into individual case reports.

The case reports were separated into sections based on the extent to which participants had experienced elevated temperatures and lung symptoms.

In addition, I pulled six of the case reports in which the participants appeared to me to have fairly clearly been suffering from something other than Covid-19 (such as a cold or flu) and put them in their own separate section, called “Additional Cases.”

A “High Fever” was defined as one that was reported as having been 100F or higher.

In those cases when a specific temperature was not reported, a “High Fever” was one where the individual stated that the listed symptom of “Elevated Temperature (Fever)” had been at least a moderate problem for them during their acute viral-type illness.

“Lung Problems” were classified as having been “Severe,” “Moderate,” “Mild” or “None” based on the participants’ own self-reports.

Lung problems that were described by participants as “Severe,” “Very Severe” and “Life-Threatening” were all combined into a general “Severe” category.

The individual case reports may be read in their entirety on the following linked pages:

Severe Lung Issues With High Fever

Mild/Moderate Lung Issues With High Fever

No Lung Issues With High Fever

Severe Lung Issues Without High Fever

Moderate Lung Issues Without High Fever

Mild Lung Issues Without High Fever

No Lung Issues Without High Fever

Additional Illnesses

 

In addition, I calculated an overall Severity Score for each participant based on responses to the provided list of 34 symptoms.

For each symptom, between 0 and and 5 points were contributed to the severity score (5 = Life threatening; 4 = Very severe; 3 = Severe; 2 = Moderate; 1 = Mild; 0 = Not a problem).

The possible range of the Severity Score therefore was 0 to 170.

Following is the provided list of symptoms: Difficulty breathing; Shortness of breath; Lung or chest pain; Feelings of lung or chest pressure; Dry cough (without phlegm); Wet cough (with phlegm); Pneumonia; Bronchitis; Headache; Sore or painful throat; Difficulties with swallowing; Difficulties with talking (sore voice); Dehydration; Diarrhea; Vomiting; Feelings of nausea; Loss of appetite (anorexia); Loss of sense of smell; Loss of sense of taste; Abdominal pain; Blue lips or face; Elevated temperature (fever); Feverish feelings; Chills; Muscle aches; Bone pain; Joint pain; Pain when moving body parts; Runny or stuffy nose; Sneezing; Weakness; Tiredness; Sleepiness; Generally feeling terrible.

The average Severity Score for all participants was 42, with calculated scores ranging from 13 to 103.

This Severity Score calculation has yet to be validated and should be taken only as a very rough estimation of the severity of the illness in question. Likely it is the case that some important symptoms are not included on the list; that some of the listed symptoms are more important than others; and that the extent to which the severity of certain symptoms contributes to overall illness severity is not a straightforward linear function.

I also calculated Time Since Onset, which was the number of days that had elapsed between the self-reported Onset Date of the Suspect Illness and the date when the survey was filled out.

In addition, I created a measure called Chronic Illness History, which was designed to describe in simple terms the extent to which each participant had experienced a history of chronic mold-related illness issues.

Chronic illness diagnoses that I considered to be relevant to this classification included Toxic Mold Illness/CIRS, ME/CFS, MCS, Chronic/Post Lyme, Fibromyalgia, Autoimmune Illness, Gluten/Food Sensitivities, MCAS, POTS, IBD and IBS.

The presence of other types of chronic illness – including respiratory or cardiovascular disease, diabetes, cancer, obesity and other issues currently identified as risk factors for Covid-19 severity by conventional medicine – were not taken into consideration with regard to this measure.

In order to determine the Chronic Illness History classification, I looked over all the answers for each participant and then categorized the person as “Severe” (currently or previously disabled as a result of the mold-related illness issues), “Moderate” (partially disabled or otherwise affected in a life-changing way), “Mild” (problematic symptoms had been present but did not interfere with ability to work) and “None” (with at most mild versions of just a few of the relevant symptoms).

Of the 111 participants who have filled out the survey thus far, about half were classified as “Severe” on the Chronic Illness History measure. (Note that a large majority of these reported that they had experienced substantial improvements as a result of mold avoidance or other factors since they were at their worst.)

For those individuals who were classified as having Covid-like illness (and thus were not listed on the “Additional Illnesses” page), the breakdowns for the Chronic Illness History measure were: Severe, 55 respondents; Moderate, 25 respondents; Mild, 10 respondents; and None, 12 respondents. (Three other respondents did not provide sufficient information with regard to their chronic illness histories to be classified on this measure.)

Some basic information for each of these groups is provided in the following spreadsheet:

Chronic Illness History

Measures included are (from left to right): Participant Number, Participant Name (a pseudonym), Days Since Onset, Chronic Illness History, Severity Score, Overall Lung Symptom Severity, High Temperature Experienced, Illness Outcome (as reported at the time that the survey was filled out) and Flu Shot (whether flu vaccine had been received during the year or so prior to getting the Suspect Illness).

Average Severity Score as well as breakdowns for High Temperature Experienced and 21+ Day Recovery Rate (that is, Illness Outcome for participants with 21 or more Days Since Onset) were calculated for each group.

Note that it turned out that all of the “Additional Cases” (people who seemed to me likely to have something other than Covid-19 such as a cold or flu) were among those classified as “Mild” or “None” on the Chronic Illness History measure.

I also created a measure called Mold Avoidance, which was based on answers to several questions on the topic.

The classifications were “Yes” (participant reported having made an active effort to avoid mold and benefiting from avoidance), “Somewhat” (participant reported having made an active effort to avoid mold but either not having benefited from it or not having been very clear of exposures prior to acquiring the Suspect Illness) and “No” (participant reported not having made any active effort to avoid mold).

Virtually all of the participants who had been designated as “Severe” or “Moderate” on the Chronic Illness History measure were classified as “Yes” or “Somewhat” on the Mold Avoidance measure.

Many of the rest of the participants stated that they had not focused at all on mold avoidance, however.

A summary of the overall survey responses for all participants is at the following link:

All Participants

 

A summary of the overall survey responses for participants who were categorized as having had chronic illness histories as well as Covid-like illness is at this link:

Chronic Illness Participants

 

Questions about experiences with various treatments were optional in the survey and have been answered by 79 participants so far.

A summary of responses for all of these participants (except for those whose cases are listed in the “Additional Illnesses” section) is at the following link.

Treatment Summary

 

Observations

Following are some of my own general thoughts with regard to the survey responses gathered so far.

 

1. Many individuals with mold-related illness reported having experienced Covid-like illnesses during the last several months.

Nearly 100 such individuals responded to the survey, and many others have reported their experiences to me privately or in discussions in the Mold Avoiders group.

Many of the reported illnesses were quite severe as well as consistent in a wide variety of ways with what has been reported about confirmed Covid-19 cases by medical professionals.

In addition, in polls conducted in the Mold Avoiders Facebook group in March and April, about a third of participants stated that they had recently experienced an illness that they believed may have been Covid-19 and more than half stated that they recently had had some kind of acute viral illness.

Many similar Covid-like illnesses among people with ME/CFS or fibromyalgia were reported by Cort Johnson in the poll results and comments section of a recent Health Rising blog article.

Laura Hillenbrand – a longtime ME/CFS sufferer who wrote the books Seabiscuit and Unbroken – described in a news media article her own experience in early March with a severe Covid-like illness.

(Hillenbrand spent a number of years totally housebound while living in Washington, D.C., but more recently has experienced health improvements after moving to a clean location in eastern Oregon.)

Especially considering that many individuals with mold-related illness say that they rarely or never get colds or flus, the general prevalence of acute viral illness reported during early 2020 seems to be noteworthy in itself.

(In this survey, the 53 participants with a severe history of mold-related illness (M=2.66, SD=1.54) reported having experienced colds less frequently in the past than did the 11 participants with no history of mold-related illness (M=3.45, SD=1.29), but the statistical significance threshold was just missed, t(16)=1.79, p=0.093).)

While it cannot be assumed that all of these people were suffering from Covid-19 rather than from some other kind of acute illness, the large number of cases reported and the similarities observed across the cases suggest to me the possibility that the virus may be a particular issue for people with this kind of illness.

Of course, the idea that people with ME/CFS and similar illnesses suffer from various immune abnormalities (including low natural killer cell function) is well-established in the medical literature.

That being the case, it very well may be that these individuals should be considered as being “immune suppressed” and thus as an at-risk group with regard to this particular virus.

Hopefully this possibility will be investigated further by other researchers in the near future.

 

2. Most illnesses were characterized by a specific group of attributes.

Individuals with chronic mold-related health issues who had recently experienced acute illnesses that they suspected might be Covid-19 exhibited a relatively consistent list of illness attributes that I came to think of as the “drumbeats” of the illness.

Although the exact specifics varied a little bit from case to case, the basic underlying drumbeats seem to me to be remarkably consistent across individuals.

For those individuals with chronic mold-related health issues who recently had experienced a milder acute illness, the drumbeats in most cases were not as loud in terms of symptom severity but still exhibited the same basic pattern.

Following is a list of the most important drumbeats that I observed in the case reports.

 

* Lung symptoms.

About 90% survey participants with pre-existing mold-related illness issues reported having experienced at least mild lung symptoms as part of their Covid-like illness.

Shortness of breath (77%) and difficulties breathing (71%) were especially common.

In addition, almost all participants reported having had at least one of the following symptoms: lung pressure (76%); lung pain (68%); dry cough (74%); or wet cough (50%).

Some reported bronchitis (31%) or pneumonia (20%) as well.

While in most cases the lung symptoms were described as mild or moderate, about 25% of these participants stated that their lung symptoms had been severe, very severe or life-threatening.

 

* Feverish feelings

The vast majority (89%) of individuals with chronic mold-related illness experiencing a Covid-like illness stated that they had experienced feverish feelings.

Most (76%) stated that they had experienced at least mildly problematic elevated temperatures (fever) as well.

However, only about 40% of participants with chronic mold-related illness reported having experienced fevers of 100F or more during the illness, and only 25% reported temperatures of 101F or more.

About 31% of individuals with chronic mold-related illness did not respond to the question about what their high temperature had been, and instead only mentioned the presence or absence of elevated temperature in the general list of illness symptoms.

This seems to have been due to the fact that many of these individuals did not have a thermometer on hand and were unable to obtain one (due either to not being able to get to a store or to thermometers being out of stock) during the period of time when they were the most sick.

In another question, about 60% of the survey participants with chronic mold-related illness said that they usually had lower-than-normal or variable temperatures, and an additional 7% stated that they didn’t know their usual temperatures.

Although high fevers are often discussed in the news media as if they are intrinsic to Covid-19, Chris Cuomo – brother of New York governor Andrew Cuomo and one of the highest-profile sufferers of the disease – recently stated in an interview that he usually has a lower-than-normal temperature and never experienced a fever of above 99F as part of his own Covid-19 experience.

Quite a few participants reported that they had been denied testing for Covid-19 because they did not have fevers that were deemed to be high enough or because they had not had thermometers available to take their temperatures during the time that they were most sick.

 

* Delay between illness onset and emergence of lung symptoms.

The most common symptoms mentioned as having been experienced during the first two days of the Covid-like illness included sore throat, fatigue, fever, headaches, body aches, nasal congestion, runny nose, and nausea.

Participants also volunteered a wide variety of other idiosyncratic symptoms that varied considerably from person to person.

While a few participants mentioned cough or shortness of breath as having occurred during the first few days of their illnesses, that was not very common.

Rather, in most cases, there were at least two days between the initial symptoms of viral-type illness and the onset of lung symptoms (defined as breathing issues, lung pain/pressure or coughing).

In many cases, a week or two elapsed before the lung symptoms emerged.

In a couple of cases, individuals stated that lung symptoms did not emerge until more than a month after their first symptom.

(I wonder in these latter cases whether the Covid-like illness might have been an add-on to a separate illness, however.)

For the most part, participants stated that their initial illness symptoms were rather mild and relatively easy to ignore, compared to the more severe symptoms that hit them later on.

 

* Experience being mostly or fully bedridden.

A large majority of the participants in the survey who reported moderate or severe lung symptoms said that they had been bedridden or nearly bedridden for at least a day with the Covid-like illness.

Many participants who reported milder Covid-like illness said that they had been basically in bed for at least a day as well.

Note that while many of these participants had a history of being bedridden as a result of their chronic illness issues, nearly all of them had since recovered to the point where they were out and about at least some of the time (in most cases attributing at least some of the health gains to mold avoidance) prior to getting the Covid-like illness.

 

* A few days of feeling particularly sick, preceded and followed by longer periods of time feeling more moderately sick.

Many of those participants reporting moderate or severe Covid-like illness volunteered that they had felt worse while sick with it than at any previous time in their whole lives.

Considering that many of these individuals previously suffered from severe ME/CFS or similar illnesses, that is saying a great deal.

In the large majority of these cases, participants stated that their illnesses began with at least several days of mild or moderate symptoms; ramped up briefly to much more severe symptoms; and then settled back down into at least several additional days of mild or moderate symptoms.

In almost all of the moderate or severe Covid-like illnesses, participants reported experiencing between 1-3 days of particularly severe symptoms.

A few participants said that the severe phase of their illness had lasted up to five days, however.

A number of the survey participants described their symptoms as having been life-threatening, with only some of these having received any medical care at all during their illness experiences.

While none of the survey participants reported having been put on a ventilator, some of the breathing problems reported were severe enough that I suspect that they might have been if they had been admitted to a hospital.

Since these individuals nonetheless all recovered from the life-threatening section of their illness on their own, I wonder what percentage of people in hospitals who are put on ventilators would recover on their own as well.

 

* Extended recovery time.

Pretty much across the board, survey participants with mold-related illness histories reported that they had a difficult time recovering from their Covid-like illnesses.

For instance, only 23% of such individuals who had first gotten sick 21 days or more before filling out the survey stated that they were totally recovered from it.

About 28% said that they were mostly recovered; 8% said they were somewhat recovered; 19% said that they were a little better but not recovered; 10% said that they were not better at all; and 12% said that while they were basically recovered from the acute viral symptoms, other chronic illness symptoms were substantially worse than they were before they got sick.

The subset of participants who had been severely affected by mold-related illness issues at some point in their lives had even more difficulty recovering, with only 16% of those who had been sick for 21+ days stating they had fully recovered.

About 32% of these individuals said that they were mostly recovered; 5% said that they were somewhat recovered; 18% said that they were a little better but not recovered; 18% said that they had not made any improvements at all; and 11% said that they were mostly recovered from the acute viral illness but that their chronic illness issues were worse.

Of the 17 individuals who had had severe chronic mold-related illness and who had gotten sick with the Covid-like illness more than 60 days before filling out the survey, 24% said that they were totally recovered; 29% said that they were mostly recovered; 6% said that they were somewhat recovered; 29% said that they were a little better but not recovered; 6% said that they had not experienced any improvements; and 6% said that they had mostly recovered from the acute viral illness but that their chronic illness symptoms were worse.

Those individuals who reported having had high fevers and severe lung symptoms reported an especially high level of general severity (with an average Severity Score of 67) as well as having an especially difficult time recovering from the illness.

Of the 17 respondents in this group who had gotten sick 21 or more days before filling out the survey, only 6% (one person) reported being totally recovered.

About 47% reported being mostly recovered; 12% reported being somewhat recovered; 24% reported being a little better but not recovered; and 6% reported not having experienced any improvements at all.

This is especially concerning since 12 of these individuals had acquired the Covid-like illness two or more months prior to filling out the survey and since five of them had acquired it three or more months prior.

 

* Relapse experience.

An unusual feature of the Covid-like illness compared to typical colds and flus that was reported by many people with chronic mold-related illness issues was that they would appear to be recovering or even feel entirely recovered before relapsing substantially.

While relapses were not experienced by all of these participants, they were common enough as well as distinctive enough that I think that it is useful to consider them as part of the “drumbeats” when they do occur.

Of those participants who had experienced chronic mold-related illness issues at some point in their lives and who had experienced improvements in their Covid-like illness, 48% said that they then had experienced a relapse and 14% said they weren’t sure.

Here is the breakdown for the 91 participants with histories of mold-related illness issues who reported Covid-like illnesses:

14% – Felt like basically recovered and then had substantial relapse (13 participants)

31% – Got somewhat better and then had substantial relapse (28 participants)

35% – Experienced improvements without substantial relapse (32 participants)

7% – Have not yet experienced improvements (6 participants)

13% – Not sure (12 participants)

 

* A wide variety of symptoms.

Survey participants tended to report a much wider range of symptoms as being associated with their Covid-like illnesses than might be expected with an ordinary cold or flu.

For instance, many of these individuals stated that they had endured the vast majority of the 37 listed symptoms, as well as additional issues that were not on the list.

Even those individuals who had reported relatively mild Covid-like illness tended to report that they had experienced a fairly wide variety of symptoms, rather than just a few.

For the most part, symptoms reported by survey participants were very similar to those reported in news media articles as characteristic of the Covid-19 viral illness.

In addition to lung issues, fever issues and general malaise-type issues, frequently mentioned symptoms included headaches (91%), muscle aches (89%), sore throat (82%), runny nose (81%), chills (79%), pain when moving body parts (72%), loss of appetite (70%), joint pain (68%), nausea (62%), dehydration (59%), sneezing (56%), abdominal pain (53%), difficulties swallowing (52%), bone pain (51%), sore voice (50%), diarrhea (47%), loss of taste (39%), loss of smell (31%) and vomiting (19%).

“Blue lips or face” is characteristic of severe lack of oxygen and was reported by 5% of respondents.

Quite a few respondents volunteered that they also had experienced skin, cardiovascular and emotional symptoms – all of which have been reported in the news media as being associated with Covid-19 illnesses during the weeks since the survey was first developed.

The wide variety of symptoms experienced by participants seems to me reminiscent of the situation with toxic mold illness, in which experiencing a wide variety of disparate symptoms is so typical that many specialists consider it to be diagnostic for the illness.

 

* Sneezing as a minor component of the illness at most.

While many of the news reports about Covid-19 have made it sound as if one sneeze means that a person cannot have the disease, many of the survey participants (including those with severe symptoms typical of Covid-19) did report sneezing as being a symptom that they had experienced.

However, in virtually all of the Covid-like illnesses reported in the survey, sneezing was listed as one relatively minor item in a long list of many different symptoms.

For instance, while 56% of individuals with chronic mold-related illness reported sneezing as having been a symptom in their Covid-like illness, only 19% said that their sneezing had been at least moderate in severity and a mere 2% said that it had been a severe or very severe symptom for them.

 

* Loss of smell or taste

While these symptoms were far from universal in this survey population, they were especially common among those participants with more severe illness experiences.

For instance, of the group that had experienced both high fevers as well as severe lung symptoms, these symptoms were reported as having been present by at least 50% of respondents.

 

3. At least for the mild and moderate cases of the illnesses reported, the possibility exists that the cause was something other than Covid-19.

For the most part, respondents to the survey either had not been tested for diseases such as influenza that could provide an alternative diagnosis or came up negative on these tests.

Presumably, those individuals who had tested positive for such diseases did not participate in the survey because it was stated to be about illnesses that were suspected as being caused by Covid-19.

One individual who had a history of being severely ill with chronic mold-related illness and who had tested positive for Influenza B did participate in the survey at my request, however.

Results are listed under “Charlotte” (a pseudonym) in the “Additional Illnesses” section.

The illness was calculated as having a Severity Score of 40, which is only very slightly lower than the average across all cases reported in the survey.

With regard to the “drumbeats” listed above, this individual:

* Reported a severe wet cough and mild versions of a variety of other lung symptoms

* Feverish feelings and a high fever

* A one-day delay between the illness onset and emergence of lung symptoms

* A period of time being totally bedridden

* An extended recovery time (feeling only “mostly recovered” at 135 days since illness onset)

* No relapse experience

* Wide variety of mild symptoms experienced

* Mild sneezing

* No loss of smell or taste

 

If we assume that this individual’s illness indeed was caused by Influenza B, then that suggests that this type of flu can cause many of the same symptoms cited as being characteristic of Covid-19 and thus could easily be mistaken for it.

Although this individual did not experience a relapse, many of the most severe cases of Covid-like illness among participants without histories of mold-related illness also did not include relapses.

The lack of significant delay between illness onset and lung symptoms and the lack of loss of smell and taste are both suggestive that the illness could be something else, but those have not been stated as diagnostic for Covid-19 and were not present in all of the especially severe illness cases collected in this survey.

As mentioned earlier, even if all the acute viral-type illnesses reported in this survey were caused by something other than Covid-19, I would still be concerned since it has not been my observation in past years that large numbers of individuals with chronic mold-related illness issues have experienced severe acute viral-type illnesses that have been very hard for them to get over.

The fact that this is happening now makes me wonder whether some kind of changed underlying factor could be weakening these people’s systems and making them more susceptible to being made especially sick by viral illnesses in general, including Covid-19 but others as well.

 

4. Survey participants with mold-related illness histories were more likely to report having experienced problems with breathing and lung pain than were participants without such illness histories. 

The survey attracted responses from twelve individuals who had experienced Covid-like illnesses but who did not have histories of chronic mold-related illness.

I therefore was able to compare participants with histories of mold-related illness against those without such histories, to see if the groups reported different experiences with their Covid-like illness.

Respondents without histories of mold-related illness were compared against all respondents with such histories as well as against respondents with severe histories.

No significant differences were found between any of the groups for the Severity Score measure or for the extent to which the individual had been bedridden during the illness.

For the symptom comparisons, participant symptom ratings were converted into numeric scores (with Life Threatening = 5, Very Severe = 4, Severe = 3, Moderate = 2, Mild = 1 and Not A Problem = 0).

T-tests for the comparisons may be viewed in this attached PDF document (as well as in the charts below):

Symptom Comparisons

For most of the 34 symptoms mentioned in the survey, no significant differences were found between any of the groups.

For three lung-related symptoms – “Shortness of Breath,” “Difficulties Breathing” and “Lung or Chest Pain” – those with histories of mold-related illness on average reported having experienced more severe symptoms, however.

The results of the two-sample T-tests for those symptoms are summarized on this chart.

 

 

The first section compares participants with any history of mold-related illness with participants with no such history, and looks at all Covid-like cases. A significant difference (p<.05) was found on the variable of “Shortness of Breath.” (The variables “Lung Pain” and “Difficulty Breathing” bordered on being significant, p<.10.)

The second section compares participants with a severe history of mold-related illness against those with no history of mold-related illness. Significant differences (p<.05) were found on all three of the lung symptoms, with the individuals with the severe histories experiencing more severe versions of the symptoms on average.

The third group of cases compares participants with any history of mold-related illness with participants with no such history, but looks only at relatively severe Covid-like illness cases (with a Severity Score of 30 or higher). Significant differences (p<.05) were found for the variables of “Shortness of Breath” and “Lung or Chest Pain.” (The variable “Difficulty Breathing” bordered on being significant, p<.10.)

 

5. Survey participants with chronic mold-related illness histories were less likely to report having experienced problems with elevated temperatures (fevers) than were participants without such illness histories. 

To create the following chart, participant responses for the symptom of “Elevated Temperature (Fever)” were converted to numeric scores (with Life Threatening = 5, Very Severe = 4, Severe = 3, Moderate = 2, Mild = 1 and Not A Problem = 0).

Among those participants who had experienced more severe Covid-like illnesses (with a Severity Score of 30 or higher), individuals with histories of mold-related illness reported having had significantly less of a problem with elevated temperatures (fevers) than did individuals without histories of mold-related illness.

For all of the Covid-like cases regardless of severity, individuals with severe mold-related illness histories seemed to be less likely to have a problem with elevated temperatures (fevers) than did individuals without histories of mold-related illness, but the effect only bordered on statistical significance (p<.10).

The trend was the same when looking at all Covid-like cases and all participants, but the effect was not significant.

 

6. Survey respondents with histories of chronic mold-related illness reported having a much more difficult time recovering from the Covid-like illness than did respondents without histories of chronic mold-related illness.

This issue of recovery was considered by looking at participant responses to the question, “Compared to what things were like when the Suspect Illness was at its worst, how are you doing now?”

Text responses were converted into a numerical ones as follows: 5 – “I feel totally recovered”; 4 – “I feel mostly recovered”; 3 – “I feel somewhat recovered” or “I feel basically recovered from the acute viral symptoms, but other chronic illness symptoms are worse than before I got the Suspect Illness”; 2 – “I feel a little better but not recovered”; 1 – “I don’t feel any better.”

 

Compared to people with no history of chronic mold-related illness, those who had such a history were much more likely (p<0.001) to report that they had not yet recovered very much or at all from their Covid-like illness.

Participants with this kind of illness history reported on average that they were somewhere between “I feel somewhat recovered” and “I feel mostly recovered,” while individuals without such a history were on average somewhere between “I feel mostly recovered” and “I feel totally recovered.”

Participants who had experienced severe mold-related illness issues at some point in their lives had an even more difficult time recovering, reporting on average that they were somewhere between “I feel a little better but not recovered” and “I feel somewhat better” with regard to their Covid-like illness.

In addition, looking at just the Covid-like illnesses with Severity Scores of 30 or more, the 33 participants with severe histories of mold-related illness (M=0.667, SD=0.479) were more likely on average to have reported suffering a relapse than were the 9 participants with no history of mold-related illness (M=0.333, SD=0.500), but the statistical significance threshold was not met, t(12)=-1.79, p=0.099).

 

7. Some participants reported that their chronic illness issues were worse after recovery.

Of those participants with histories of chronic mold-related illness who had experienced a Covid-like illness, 53% stated that they were totally, mostly or basically recovered from their acute viral illness at the time they filled out the survey.

However, of these, about 15% stated that other chronic illness symptoms were worse than before they got sick.

Symptoms mentioned most frequently as being worse were fatigue, pain, headaches, abdominal pain, arthritis, digestive issues, depression, asthma, allergies and cough.

Looking at the Chronic Illness History groupings, the percentage of participants who said that they were basically recovered but had lingering worsening of chronic illness symptoms were as follows:  Severe, 11%; Moderate, 10%; Mild, 18%; None, 0%.

Interestingly, all of the 12 respondents without chronic mold-related illness histories stated that they were “Totally” or “Mostly” recovered from the Covid-like illness by the time they filled out the survey, and none said that they were still suffering from chronic illness symptoms.

This is in contrast to a number of recent media reports, which make it sound like a high percentage of previously healthy people who get Covid-19 will end up with ME/CFS:

Science Daily – March 27, 2020

Simmaron Research – April 2, 2020

The New York Times – April 13, 2020

New Scientist – April 15, 2020

Pittsburgh Post-Gazette – April 28, 2020

The Telegraph – May 2, 2020

Washington Post – May 9, 2020

Huffington Post – May 11, 2020

 

My suspicion with regard to the cases reported in the media is that many of these individuals were already experiencing some chronic illness symptoms that would have caused them to be classified as having “Mild” or “Moderate” chronic mold-related illness in my own analysis, even though they had not yet been bothered by them enough to have seen a doctor and been classified as having ME/CFS or some other illness.

This would echo the situation reported by Erik Johnson with regard to the Lake Tahoe epidemic, where he describes the individuals who were hit hardest by the “weird flu” (initially referred to as the “China Flu”) as having been those who previously were suffering from mild symptoms of chronic illness associated with ongoing exposures to particularly moldy buildings.

A separate page – called Contagious Viral Illness and Toxic Mold in the Lake Tahoe Epidemic – lists some of those recollections.

 

8. I’ve yet to hear about any individuals with mold-related illness histories who have died as a result of a Covid-like illness. 

I have now heard from quite a few individuals with chronic mold-related illness issues who have feared that their lives were in danger due to breathing problems associated with their Covid-like illnesses, but all of them recovered to a much improved level of symptom severity after several days at most.

Some of these very severely ill individuals consulted with physicians, while others endured their illnesses on their own.

While a few of these individuals who already owned CPAP machines used them during their Covid-like illnesses, I’ve yet to hear of anyone with mold-related illness having been put on a ventilator in a hospital.

However, because most of the cases that I have heard about so far have been from people who have been pursuing mold avoidance to at least some extent, it is hard to know for sure how Covid-like illness would affect those with ME/CFS or similar illnesses who are living or working in particularly bad mold exposures.

Conceivably, the death rate from the virus could turn out to be higher among those people (as, say, it was in the Life Care Center nursing home with the obviously bad roof).

 

9. The severity of the Covid-like illnesses cases reported in this population appears to have decreased as a function of date of illness onset. 

This attached Microsoft Excel document provides data relevant to this topic.

Severity Score Over Time

Cases that are listed on the Additional Illnesses page (due to their appearing to me to be due to something other than Covid-like illness) are excluded from this analysis.

In the Microsoft Excel chart, date of illness onset was converted into a Chronological Case Number series, where the earliest case (May 11, 2019) is listed as “1” and the latest case (March 26, 2020) is listed as “105.”

The cases are plotted on the following graph. Severity Score is on the Y axis and the Chronological Case Numbers are shown on the X axis (with the earliest case on the left).

When two cases fell on the same date, one of them was arbitrarily listed as being earlier than the other so that they would not overlap on the graph. (These numbers are listed in the “Chrono 1” column in the spreadsheet.)

Following are the onset months associated with the Chronological Case Numbers shown on the graph.

1 – May 2019

2-3 – October 2019

4-9 – November 2019

10-24 – December 2019

25-38 – January 2020

39-64 – February 2020

65-105 – March 2020

 

The correlation between Severity Scores and Chronological Case Numbers was calculated, with the R-square = -0.3021.

(For this calculation, the Chronological Case Numbers on the column headed Chrono 2 were used. This is the same as the Chrono 1 column, except that cases that fell on the same illness onset date were given the same numbers rather than having one arbitrarily placed ahead of the other.)

The mean Severity Score was 43.5 and the standard deviation was 19.96.

Whether illness severity in this population actually is going down over time is unclear, since the results could have been impacted by particular ways in which the data was collected.

For instance, the initial instructions for the survey read as follows:

COVID-19 may manifest differently in different people, depending on the level of severity and other factors. Therefore, please go ahead and fill out this survey if you have experienced any kind of acute viral-type illness since December 1, 2019, even if you are not convinced that it was COVID-19 rather than something else. Also, if you had an illness prior to December 1, 2019, and believe that it may have been COVID-19, please feel free to fill out the questionnaire focusing on that illness.

 

It therefore could have been that some respondents interpreted the instructions to suggest that milder illnesses that likely were not Covid-19 were to be discussed in the survey only if they had occurred subsequent to December 1.

It also could be that some people forgot about earlier milder illnesses from which they had recovered and thus did not fill out the survey for those illnesses, while others did fill out the survey for more recent milder illnesses since they were fresher in their minds and also because they were worried that those illnesses might be Covid-19.

In addition, it is possible that some of the most recent illnesses that were still in their early stages when the surveys were filled out ultimately will include more severe symptoms than were listed in the responses.

On the other hand, many new viral illnesses do tend to decrease in severity over time, as new strains emerge.

For instance, if a virulent strain is highly deadly or incapacitates people for an extended period of time, then it may be less likely to have a chance to spread to others than would be the case with a milder strain.

Despite the methodology issues, it is my own guess that the results of the survey suggest that the average severity of the Covid-19 cases reported in this population seems to have decreased markedly over just a few months and that this seems to be at least in part a real effect.

It would be interesting to see some additional research on this topic.

 

10. About 20% of cases reported in the survey seem to be quite a bit more severe than the rest of the cases.

Looking again at the graph labeled “Severity Score Over Time” in the section above, it seems to me that while most of the cases congregate at relatively low Severity Scores, a subsegment of the cases (such as 1/5 of the total) have much higher Severity Scores.

The latter group of cases present as “spikes” on the chart, distinguishing themselves visually from the majority of the cases on the graph.

Assuming that this is actually a real phenomenon, I wonder what factors may be making those particular cases manifest so much more severely than the other similar cases.

For instance, it seems to me that many of the factors that I would imagine might play a role in illness severity (such as general health status of the individual or current environmental mold exposures or treatments used) would be more likely to manifest in more evenly distributed group Severity Scores rather than as spikes.

One possibility, of course, is that the spikes on the graph are actual Covid-19 cases, while most of the other reported illnesses are due to some other kind of pathogen.

The fact that many confirmed Covid-19 cases have manifested mildly makes me doubt that actually is the case, however.

I therefore wonder whether some other key underlying factor – such as a viral strain difference or the presence of a particular co-infection – could be of particular importance in terms of how severely the illness manifests.

 

11. While Covid-like illnesses in the survey were reported from many different U.S. locations, illnesses from certain states (including Arizona, California, Indiana, New Mexico, Nevada, North Carolina, Tennessee and Washington State) seem to have been especially likely to manifest in severe ways. 

Some of the U.S. locations that have been the biggest hot spots for Covid-19 (such as Michigan, New Jersey and New York City) are places that people who are pursuing mold avoidance tend to avoid, and so perhaps this in part explains why so few people from those areas have participated in the survey so far.

On the other hand, it seems that illness cases from certain other states have been reported in the survey to be relatively severe, especially with regard to lung symptoms.

At first, my guess was that these locations were being disproportionately affected by particularly problematic viral strains, and I still think that explanation may have merit.

However, since learning that some Covid-19 patients have been found to have secondary Aspergillosis infections, I also have been wondering about the possibility that other types of fungal infections that are endemic in certain parts of the country might be playing a role in terms of the severity of lung symptoms experienced.

For instance, Valley Fever is a fungal infection that is quite prevalent in Arizona, California, New Mexico and Nevada; Histoplasmosis is a major problem in Indiana; and C. gattii is a presence in Washington State (including the Seattle area).

To my understanding, all of these fungal infections have the potential of causing lung symptoms similar to those reported by participants in this survey.

Also to my understanding, those fungal infections usually are kept in check – though often not totally eliminated – by the immune systems of those who are reasonably immunocompetent.

I therefore am wondering if Covid-19 (or whatever other pathogen is causing the Covid-like illnesses reported in this survey) might be altering individuals’ immune response in a way that makes it easier for fungal infections to flare and cause lung symptoms.

If this indeed is the case, then it would seem to have the potential of providing a possible explanation for why people with chronic mold-related illness appear to be especially susceptible to developing lung issues from which they have a hard time recovering with the Covid-like illness, since it is my understanding that those individuals may be especially likely to have chronic fungal infections in residence at low levels in their systems to begin with.

 

12. Many cases of Covid-like illness were reported by survey respondents as having been experienced prior to January 1, 2020.

Following is the breakdown of the 105 Covid-like illness cases reported in the survey by month of illness onset.

May 2019 – 1 illness (1%)

October 2019 – 2 illnesses (2%)

November 2019 – 6 illnesses (6%)

December 2019 – 15 illnesses (14%)

January 2020 – 14 illnesses (13%)

February 2020 – 26 illnesses (25%)

March 2020 – 41 illnesses (39%)

April 2020 – 0 illnesses

 

At first, I was skeptical about the idea of whether the early cases could have been caused by Covid-19 since at the time the news media was reporting that the virus had not jumped from a bat to humans until December 2019 and had not arrived in the U.S. until February 2020.

Some early speculation that that the virus could have been present in the U.S. in Fall 2019 was even denounced as “dangerous misinformation” by certain media outlets.

A current Snopes article states that while nothing about the illness is certain, the chance that respiratory ailments suffered in Fall 2019 were caused by Covid-19 is “astronomically low.”

However, the story about the origins of the virus seems to keep changing as more information is obtained and more experts weigh in.

For instance, genetic researchers at the University of Cambridge recently stated that they believe that the virus may have emerged as early as September 2019.

A report from France suggests that a Covid-19 case was present there in December 2019 – weeks earlier than previous reports suggested that the disease had made its way to Europe.

The Public Health Agency in Sweden now says that the virus may have been present in that country as early as November 2019.

Recent articles in The Wall Street Journal and The New York Times discuss the possibility that the virus was present in the U.S. earlier than was originally thought.

Even the question of whether the virus may have been bioengineered (which originally was wholly dismissed) now is being discussed in Newsweek and other mainstream media outlets – suggesting to me that everything about the origins of this virus is currently up for debate at this point.

University of Chicago Medicine site currently states, “We learned about this particular virus shortly after a cluster of severe pneumonia cases were reported on New Year’s Eve 2019 in the city of Wuhan, China. New evidence suggests that the earliest cases of COVID-19 were seen in November but we are still learning about the origins of the virus.”

To my understanding, much of the speculation on when the virus emerged is based on the idea that it is contagious enough and virulent enough that it would have been noticed prior to the Wuhan outbreak if it had emerged somewhere else at an earlier point in time.

However, the extent to which the virus spreads and causes problematic illness is increasingly seeming to be erratic and not easily predictable based on obvious factors such as population density.

Personally, I continue to believe that it may be that having chronic mold-related illness and/or currently living or working in a moldy building can make people more susceptible to being made ill by the virus.

Conceivably, the particular viral strain acquired also could be very important in terms of how severely the disease manifests.

Recent reports suggest that the virus has the potential of causing no symptoms whatsoever in the vast majority of the people who have been infected by it to a sufficient extent to be creating antibodies – though the extent to which environmental issues or strain issues may have an impact on this is a topic that appears thus far to be almost totally unexplored.

Considering all of these issues, it does not seem to me wholly implausible that the virus could have emerged much earlier than is currently believed and then spread around unnoticed for a while, prior to a particularly bad strain hitting the particularly flood-prone and toxic city of Wuhan and killing a bunch of people there.

If that is the case, and if indeed people with chronic mold-related illness are more likely to get sick from the virus than people in general, then the idea that respondents to this survey may have gotten the illness a number of months before the outbreak in Wuhan occurred may not be as implausible as I first thought.

 

San Juan, Puerto Rico

13. The earliest U.S. cases of the Covid-like illness reported in the survey tended to be especially severe, with several having a connection to Latin America or Hawaii.

Although the first three cases in the survey had onset dates prior to November 2019 (the time that many people currently believe the Covid-19 first emerged in China), my feeling is that all of these are clear enough cases that it would be a mistake to dismiss them as relevant.

The first reported illness – experienced by “Jessica” in May 2019 –  was very severe and included many symptoms and laboratory findings (including ground-glass opacities and heart issues) that recently have been reported to be particularly associated with Covid-19. Valley Fever issues also were a part of this individual’s viral illness experience.

That illness appears to have been acquired at Disneyland in California – a place that, I now think, could be the most likely spot in the U.S. for picking up odd bugs due to its being frequented by large numbers of tourists from across the world in general and from Asia in particular.

The second individual – “David” – acquired the viral illness on an extended business trip to Puerto Rico in October 2019, while staying in a moldy hotel in an area of San Juan where many Chinese people were doing business. His viral illness went away on a brief visit back to Indiana, but then he relapsed after returning to Puerto Rico. Many other people in the area were experiencing a similar illness at the time, he said.

The third respondent – “Stephanie” – acquired the illness at the end of October in Raleigh, NC. This town is part of the “Research Triangle” and attracts scientists from all over the world, and also is the home of the Virus Culture laboratory at the North Carolina State Laboratory of Public Health.

While some of the other early cases were only moderately severe and conceivably could have been caused by something else such as influenza, a number of others experienced in November and December were very severe and included all the hallmarks of Covid-like illness.

Included in this group were “Barbara” (who got sick on a cruise through South America); “Brenda” and “Melissa” (both of whom seem to have been infected on separate trips to Disney World in Florida); and “Michelle” (who got sick on a visit to Kauai).

The latter case is especially interesting to me since I heard separately from a different person who reported having seen several people get sick with a Covid-like illness on Kauai in December as well.

A list of all survey cases with information about onset date, relevant locations, presence/absence of high temperatures, lung symptom severity and overall severity score is at the following link:

Survey Case List

 

14. The epidemic of Covid-like illness in this population seems to have peaked in March and since has faded away almost entirely. 

As noted above, the survey reports of Covid-like illness in terms of onset dates peaked in February (25% of total cases) and March (39% of total cases).

Thus far, no one with an onset date of April or May has responded to the survey.

Because I wondered whether people with more recent onset dates might be waiting to fill out the survey until their illnesses had progressed or until they were feeling better, I conducted a one-question poll asking about illness onset date in the Mold Avoiders group on May 1-2.

Of the 129 group members who said in that poll that they had experienced a Covid-like illness, only four individuals (about 3% of the total) stated that the date of onset had been in April or May.

Considering that many new cases of Covid-19 are being reported throughout the U.S. on a daily basis, the lack of cases with recent onset dates in this population has been a bit puzzling to me.

One thing that I have been thinking about, however, is the fact that a “new case” that is reported in the news media is not necessarily one with a recent onset date.

Rather, illnesses that are reported as “new” in the news media could have been acquired weeks earlier but only recently become severe enough for the individuals to risk checking into a hospital.

The lack of available testing that occurred during the initial stages of the outbreak also seems likely to have caused substantial delays in reporting to have occurred.

Considering that information about onset date appears to be so relevant to issues such as illness spread, it now seems odd to me that it is not being discussed more with regard to new Covid-19 cases that are being reported.

I wonder what the general population trend lines with regard to Covid-19 cases would look like if the information were listed by illness onset dates rather than diagnosis dates.

I also have been wondering how much of the fading away of new-onset cases in my population of survey respondents since the beginning of April has been due to social distancing activities having been unexpectedly effective, rather than to the epidemic just spontaneously dying down of its own accord.

To try to get a better sense of this, I asked Mold Avoiders Facebook group members who had not yet experienced an illness that they thought might be Covid-19 to provide summaries of what their lives had been like in recent months.

While it does seem that most of these individuals have been making active efforts to distance themselves from others, I’m not sure whether they have been doing so to a greater extent than the average U.S. resident.

I therefore wonder if the epidemic might have died down in the general population much more than the news reports suggest, with this fact just being obscured due to how the data is being reported.

 

15. Many participants did not report their illnesses to any healthcare practitioners or receive any guidance from them. 

About 40% of participants in the survey had not consulted with any healthcare practitioners with regard to their Covid-like illnesses, and another 22% consulted with one or more practitioners only via phone or Internet.

Many individuals who had experienced severe symptoms were among those who had not spoken to any practitioners.

Popular reasons provided for not having consulted with practitioners included “Doubt that practitioner would be able to help” (64%); “Illness has not been severe enough” (44%); “Avoid healthcare practitioners in general” (28%); “Concerned about exposures to infections” (21%); “Concerned about exposures to mold or chemicals” (18%); “Too much trouble” (13%); “Don’t have primary care provider nearby” (13%); “Don’t have primarily care provider at all” (13%); “Concerned about infecting others” (13%); “Concerned about being quarantined” (10%); “Concerned about out-of-pocket costs” (10%); and “Feel too sick to make the effort” (10%).

While some of those who had seen practitioners said that they felt that they had been helped by antibiotics or nebulized substances that had been prescribed, most suggested that the practitioners had not been helpful either in giving them a good diagnosis or in suggesting useful treatments.

 

16. All five of the survey respondents who had been tested for Covid-19 at the time that they filled out the survey had received negative test results. 

A few other individuals with mold-related illness have reported their test results to me personally, with some coming up as positive and others coming up as negative.

In addition, Laura Hillenbrand – who was tested as having very low levels of oxygen on a pulse oximeter and diagnosed with Covid-19 by a physician based on her symptoms – said in a media article that she had come up negative on testing.

Of course, the large numbers of false negatives generated by early Covid-19 tests is well-documented, and some of these individuals could have had some other disease such as the flu.

However, I have been thinking about the fact that many people with chronic mold-related illness report not coming up as positive on conventional tests for Lyme disease and other tick-borne infections, even when they become sick in classic ways immediately subsequent to a tick bite and even when they benefit from treatment such as antibiotics.

I wonder if Covid-19 will turn out to be another pathogen that has the ability to cause problems for people with chronic mold-related illness even when the results of mainstream tests say that they are negative for it.

 

17. While pursuing mold avoidance does not seem to provide any guarantees that people will not get sick with Covid-like illness, it may be helpful with regard to reducing the severity of the illness.

Almost all of the survey participants who had previously been sick with moderate or severe mold-related illness reported that they had made efforts to pursue mold avoidance, and the large majority said that their health had improved substantially subsequent to starting those efforts.

In addition, most of those individuals said that they were at least pretty good at knowing when they were being exposed to mold toxins that were a problem for them and that they believed that they had been relatively clear of mold exposures prior to getting sick with the Covid-like illness.

It thus seems to be the case that even conscientious mold avoidance does not protect people with this kind of illness history from getting sick with Covid-like illness.

Nonetheless, “Avoid moldy buildings” was one of the treatment interventions rated most highly by participants in the survey, with 68% of triers saying that it had been critically important or very helpful for them and 73% saying that it had been at least somewhat helpful.

In addition, many individuals volunteered that they had experienced flares of their Covid-like symptoms subsequent to encountering increased toxic mold exposures (including very small exposures that they said normally would have only a minimal effect on them).

The treatment intervention of “Spend time outdoors in good locations” also was highly rated in the survey, with 52% of triers saying it had been critically important or very helpful for them and 82% saying that it had been at least somewhat helpful.

Of course, there is a good deal of recent scientific research showing that spending time in nature provides a wide variety of health benefits.

Spending time outdoors also was previously used successfully in the early 20th Century as a treatment for the H1N1 Spanish Flu outbreak as well as tuberculosis.

If spending time outdoors in places with good air quality is indeed a good preventative or treatment with regard to this particular viral illness, then the idea that current government policy has purposely closed many local, state and national parks – thus causing people to be basically trapped inside their homes (and in many cases their moldy homes) – seems to me a possibly very misguided strategy in terms of how this epidemic is being handled.

 

18. A number of the survey respondents suggested that they believe that this particular viral illness has a toxicity component to it. 

Many of the individuals who participated in the survey are accustomed to using their own reactions to avoid places or objects that cause them to feel worse.

A number of these individuals reported reacting strongly to other people who were currently experiencing a Covid-like illness or to their own contaminated clothing or bedding.

For the treatment intervention of “Bathe and change clothes frequently,” 32% of triers said it had been critically important or very helpful for them and 57% said that it had been at least somewhat helpful.

“Coffee enemas” (a treatment that supposedly helps with detoxification) also were highly rated among the nine individuals who had tried them while experiencing the Covid-like illness, with 67% of triers saying they had been critically important or very helpful and 89% saying that they had been at least somewhat helpful.

While I have heard it suggested in the past that fungal colonization possibly may cause individuals to cross-contaminate their environments or feel especially toxic to others, this is the first time that I have heard of a viral illness causing these kinds of effects.

I thus again wonder whether the virus responsible for this illness could be opening a door to the body being unable to keep other pathogens such as fungal infections in check, rather than the virus being responsible for all the damage on its own.

 

19. While the survey results do not point to a silver bullet that will defeat the Covid-like illness on its own, most participants reported that they had been helped by some particular treatment strategies.

Several of the treatments that came up as the best in the survey were those involving “lifestyle” activities, including sun exposure; staying warm; taking warm or hot baths; rinsing sinuses; gargling; rest; reducing stress; and (as mentioned earlier) avoiding moldy buildings and spending time outdoors in good locations.

Vitamin C and medicinal mushrooms also had fairly high percentages of positive reports, and a few people said that they had been helped through the use of a nebulizer.

Azithromycin was the most-used prescription drug, with a total of 18 triers. Of these, 33% said that the drug had been critically important or very helpful, and 61% said that they thought that the drug had been at least somewhat helpful.

“Other Antibiotics” (mostly doxycycline and amoxicillin) had a total of 18 triers. Of these, 28% said that these drugs had been critically important or very helpful, and 67% said that they thought the drugs had been at least somewhat helpful.

Three respondents reported having tried hydroxychloroquine, and one had tried the combination of lopinavir and ritonavir. All of these individuals said that they didn’t know if those drugs had been helpful.

A variety of over-the-counter and prescription medications intended for colds and flus – including acetaminophen, aspirin, electrolyte beverages, prescription and non-prescription cough syrups, cough drops, and Vicks VapoRub – were described as “somewhat helpful” by the majority of participants.

Additional treatments that appear to have some potential for being helpful based on the survey results include antifungal drugs; antiviral drugs; citrus fruits; essential oils; ginger; melatonin; quercetin; raw honey; vitamin D; and zinc.

Treatments stated as having been harmful by multiple survey respondents included alcohol, marijuana, cortisone/cortisol and “other antibiotic drugs.”

More details about treatment ratings are on the following page:

Treatment Ratings

 

More About Paradigm Change

Lisa Petrison is the executive director of Paradigm Change. She holds a Ph.D. in marketing/psychology from the Kellogg School of Management at Northwestern University.

Information about taking the survey is summarized in a Paradigm Change blog article called Coronavirus COVID-19 and Viral Illness Survey.

A previous Paradigm Change blog article is called Could the Coronavirus Epidemic Have a Toxic Mold Connection?

Paradigm Change also provides a wide variety of additional information on the topic of the role of mold toxins in chronic illness.

The remarkable life of Erik Johnson (including details about the Lake Tahoe epidemic) is summarized in the book Back from the Edge, written by Lisa Petrison.

A PDF copy of the book is available for free to those signing up for occasional email newsletters from Paradigm Change.

Erik’s approach to mold avoidance is outlined in the book A Beginner’s Guide to Mold Avoidance. 

It is available for free in PDF format to those signing up for occasional email newsletters from Mold Avoiders.

The book is also available from Amazon in paperback and Kindle versions.

The Mold Avoiders discussion forum is run by Paradigm Change and is designed to help those who are seriously interested in pursuing the approach to mold avoidance described in the book to get their questions answered.

Only those who have been approved as Mold Avoiders Participants can read or post in the forum.

The Mold Avoiders Facebook group is designed for more casual conversations among those who are interested in this approach to mold avoidance.

 

GO TO THE SURVEY

 

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