There’s certainly good reason to connect mold exposure with chronic fatigue syndrome (ME/CFS). The symptoms are very similar and if you stick around long enough you’ll hear of chronic fatigue syndrome (ME/CFS) patients who were disabled by mold or who got better through mold avoidance. (Health Rising has a couple of remarkable mold recovery stories in its database.)
Many ME/CFS patients don’t do well in moldy environments and they may have other issues going on as well. For me, living in the desert did improve my symptoms nor did living in the more moldy south make them worse but I definitely have to limit my exposures to moldy houses. Mold is in play for me; I’m just not sure where.
Many doctors use the concept of ‘total load’ to describe what they think is going on in ME/CFS. They believe ME/CFS is not due to one virus or one toxin or one species of gut bacteria ; it’s the virus plus the toxin plus the gut bacteria that causes this disorder and they treat the disorder by attempting to ‘reduce the load’; ie by getting rid of the toxin or the allergen or the mold or whatever is that is depressing your system.
If you’re not one of the lucky people who found mold was it for them, mold may still very well be in the picture.
As welcome as it is to finally get a study on mold issues in chronic fatigue syndrome, this study had some issues.I recently had a long talk with someone who ripped ME/CFS research studies a new one because of poor study designs, etc and since then I, with my limited knowledge of study design, have been looking at them a bit more closely.
The participants, all ME/CFS patients, were asked if they’d been exposed to water-based building damage and were given a urine analysis to determine if mycotoxins were present in ME/CFS patients. Their test results were compared to healthy controls presenting at a Midwestern infectious disease clinic who had not been exposed to water-based building damage.
The mycotoxin results were extraordinary with 93% of ME/CFS patients testing positive for at least one mycotoxin compared with 0% (yes, 0%) of the healthy controls. Over 90% of ME/CFS patients had been exposed to water-damaged buildings while none of the controls had. That got my attention.
Very, Very High Rates of Mold Exposure in the ME/CFS Community???
It turned out that the healthy controls were selected in part because they’d reported no prior exposures to water damaged buildings. That enabled the researchers to highlight the effect that type of exposure may have but made it impossible to be able to state that ME/CFS patients are more likely to be exposed to water-damaged/moldy buildings than healthy controls.
Several factors suggest the 93% rate of positive mycotoxin tests in ME/CFS may not be reflective of the general population.
- The authors defined ‘water-damaged’ buildings broadly enough (leaky pipes, window leaks, roof leaks, plugged up drains…) that many people must have been exposed to one. (Two of the houses I’ve lived in in the past two years had water damage. One was surely very moldy and I had to limit my time in it, but I also lived in a house with water damage to the kitchen (no problems). They did note, though, that ‘many’ (why not give a percentage?) of the ME/CFS patients had lived or worked in a building with visible mold – an indication of a mold problem that went beyond a plugged up drain or a window leak).
- This study also emanated from a infectious disease specialist apparently with a focus in mold issues which means he may be gathering a distinct subset of mold exposed patients and this makes sense given the report that many of the study participants had lived/worked in buildings with visible mold.
- The most common type of water-based damage to residential dwellings occurs in basements and most of the participants came from the Midwest where basements/cellars are probably more common than in the western and southern states. People from these locations may be more likely to be exposed to high levels of mold.
To sum up….
- It’s impossible to say based on this study that mycotoxin levels or mold exposure is more prevalent in ME/CFS patients than the general population
- It’s impossible to say that mycotoxins caused the illness present in the ME/CFS population
- It is possible to say that mycotoxins are associated with severe illness and high rates of exposure to water based damage in this group pf patients.
Mycotoxin levels could very well be more prevalent in the ME/CFS population; given reports of increased levels of pathogens and anerobic gut bacteria, one might expect increased levels of fungal attack. It’s also very possible that mycotoxin presence is associated with severe illness in ME/CFS. We simply need different types of studies to prove those things.
What we can say is that this group of patients was very ill, had tried numerous other treatments unsuccessfully and had high rates of positive mycotoxin results. That’s worth notice, particularly since we know that getting away from mold does work really well for some people with ME/CFS.
Some mold doctors believe a genetic component is important and a genetic component would allow one family to live safely in a house with mold and a second family to fall apart. If a genetic component is present it could explain the ‘whole family syndrome’ which occurs when whole families come down with an ME/CFS like condition after a) moving into a new house or b) after water damage occurs. Examining the living environment of 18 of the ill patients revealed the same mycotoxins present in the patients urine were found in the house.
The Hit and Run Syndromes?
Mold-induced ME/CFS, toxin triggered Gulf War Illness (GWI), trauma associated fibromyalgia, toxin initiated Environmental Illness, Borrelia triggered long-term Lyme disorder and perhaps infection-triggered ME/CFS may all have one thing in common; a single trigger which if removed does not relieve the illness! Some people with mold-induced ME/CFS do recover by removing themselves from the moldy environment but others do not. Accident triggered fibromyalgia does not resolve itself once the injury is healed. GWS patients are still sick decades removed from the Gulf War. The pathogen issue in Lyme and ME/CFS is more complicated but it’s possible that for many, the initial infections were resolved , but the illness remained.
Some sort of system reset appears to be occurring in all these disorders.
Mold Problems in Dwellings
The New York State Department of Health states the key to preventing mold growth is to control all moisture problems and warned to be on the lookout for these common sources of moisture:
- Roof leaks
- Plumbing leaks, drainage problems
- Damp basements and crawl spaces
- Steam from the bathroom or kitchen
- Condensation resulting from poor or improper insulation or ventilation
- Wet clothes drying inside the home or a clothes dryer venting indoors
- Poor or improper ventilation of combustion appliances
They state that mold problems can usually be seen or smelled and that the best way to find mold is to examine areas for visible signs of mold growth, water staining, or follow your nose to the source of the odor. It may be necessary to look behind and underneath surfaces, such as carpets, wallpaper, cabinets, and walls.
This is a quick overview of some treatment possibilities if you have been sickened by mold exposure. Others surely exist.
Dr. Ritchie Shoemaker
Dr. Shoemaker has proposed neurotoxins and problems with detoxification lay at the heart of ME/CFS and other disorders.
Shoemaker’s Mold Survivor’s website is the most complete site on biotoxin/mold illnesses I’ve found. His treatment protocol is a step by step process which begins with lab tests, doing mold testing in buildings, patient withdrawal from moldy areas, using Cholestyramine or Welchol to detoxify and then correcting lab abnormalities. He’s created a physician training course to educate physicians in his approach.
Dr. Shoemaker on Biotoxin Illnesses
General Treatment Suggestions Gathered From the Web
Avoidance – so that the body can detoxify itself and return to health. Avoidance works for some people and others need more help.
Cholestyramine (Questran) – New Uses for Old Products – Cholestyramine is an old cholesterol reducing prescription medication that has been largely superseded by more newer, more effective meds which can bind to the mold toxins in the gut and remove them from the body. A well test medication its has side effects other than constipation and heartburn.
Other Detox Methods – Limu -Muoi Modifilan, zeolite, saunas (infrared is best) all employ different means of detoxificaiton. Dr Shoemaker reported he has not found success with charcoal, zeolite or herbal preparations. For more on these from a patients website, click here.
The first study I found that was focused explicitly on chronic fatigue syndrome and mold, this study wasn’t able to tell us much about rates of mold exposure/illness in ME/CFS but it did suggest that mycotoxin presence in ME/CFS may be associated with severe illness and increased exposure to water based building damage. Dr. Shoemaker has developed a detoxification protocol to address mold toxicity.
Dr. Martin Gallagher MD and Naturopath says, yeast (candida) in the gut, over time, can transfrom into a mold form, in the immune-compromised patient!
It is not in the interest of the medical community to overcome this situation.
I was curious if you were a patient of Dr. Gallagher. I receive “immune I.V.’s” at his office. The high dose vitamin C works wonders!
I have been ill from mold exposure for 13 years now. VIT V IV did nothing for me nor did it change my bloodwork after 100 iv treatments it is rubbish. without glutathion and other things lipoic acid etc it doesnt touch the mycotoxins or anything else. The insurance company covers it because it is innocuous but that is about all.
Some Facebook comments:
Nicolette Yvonne – I live in a building with water damage, and of course moving out is yet another hardship on my already fatigued body. I know I’m being affected by mold right now….honestly, due to illness and finances, I feel there is no escape
29 minutes ago · Like
I did not realize my posts on Facebook end up on the web–just curious how that happens? They actually get published on this site, when I saw this on FB and responded on FB. I’ll keep that in mind in the future.
In any case, it’s good this study raised a discussion, and like many with chronic lyme, I became very mold sensitive, mainly to toxic indoor molds. It’s not the cause of my problems, but since lyme and mold toxins are very similar or derail the system in similar ways, it is now a barrier to getting well (ie exposure–indoors).
The more I think about the study however, the less I like it.
1) I looked up the publisher of the journals to try and find the impact factor. I couldn’t find an impact factor but they did list impact factors for their other journals which were generally really low (like 1 or 2–which means 1 or 2 citations in two years, generally). One of their journals was over 3 and they were proud of that. Impact factors can go as high as nearly 40 (Nature) but many journals would be happy with 5-7.
2) They charge a fee for publication because they are a web-only open access publication. It’s 800 Swiss francs or nearly $1000 per article. I have no idea how common this is with these type of journals, and assume that pays for the time spent by the editors, even so it does make me cautious.
3) Their peer review is two authors. That’s a little bit low.
4) The study itself. I went back to look at the 2009 study cited in the paper as the source of the controls. It’s actually an interesting study where they tried to establish a baseline for excretion of mycotoxins in urine from healthy controls versus people in known WDB who were sick and excreting mycotoxins. They looked at various tissues which is a good thing. OTOH they admit their sensitivity ranged in some cases from something like 40-80%. This troubles me. That’s a fairly wide range for sensitivity. Their specificity however was accurate. And their analysis of mycotoxins in tissue was interesting. However knowing that mycotoxins are lypophilic and that according to Dr. Shoemaker’s work they recirculate in bile, I don’t know why they didn’t use stool samples, since stool contains bile (as well as doing other samples).
Here is the study. It’s actually been cited 13 times which is a good number of times.
However, having established a very low baseline for excretion of mycotoxins from healthy controls, they simply “imported” that “N” (55 controls) into their current study four years later as if that were actually controls for the current study. This seems sloppy to me. A study with controls should be currently chosen controls.
5) They don’t explain how they recruited those controls or how they determined those controls had no evidence of WDB> The fact is just because you can’t see mold growing on your wall doesn’t mean you don’t have a WDB. WDB are common. In fact most hvac systems with flex ducting get enough condensation and then dust and various spores that gather in the flex ducting; the a/c cycles and off as temperatures in the home rise and fall, and they inevitably get mold that can often have toxins. It isn’t just serious leaks. In addition, many people have hidden mold they have no clue about. A good example is on Pat Sullivan’s blog:
Mold, along with other issues including TBI, was an issue for him. He was living in Scottsdale and sure his house had no water damage or mold. But Dr. Shoemaker felt his test results indicated his house had mold and eventually he discovered the windows had been installed improperly and there was water leaking into the wall cavities. He had it remediated.
Another example is in a video by the bulletproof exec. I watched the video recently
That’s his website. He describes having a dishwasher leak for two years and not knowing it, but when they replaced the dishwasher the mold hit was very intense, making him sick and even affecting his healthy wife. So they were being exposed to mold for two years.
My point here is to determine whether healthy controls have WDB or mold exposure it’s probably best to do an ERMI dust test and other tests of the buildings they are living and working in.
Because it is my hunch that healthy controls just process and get rid of mycotoxins anyway. Maybe it is broken down even before it gets to the urine. Who knows. This would be really important to find out. So I don’t really like the way this control group was put together and I don’t think it mines the data well.
6) I don’t know how the patients were recruited and whether there was a bias in sampling. Because of that, I don’t know how accurate the percentages are for mycotoxins and CFS. That also frustrates me. It doesn’t invalidate the connection though. I’ve experienced a severely WDB and it was very bad for me. But I first got a tickbite that made me sick and I think that is important.
Why do I think that’s important? Take the story of cfs patient advocate whose daughter seems to have ME/CFS
On that blog at one point she describes how her daughter, who seems to have an underlying virus as in many with ME, moved into a building that was built over a stream (nobody knew) and also had incorrect insulation in the attic leading to a mycotoxic living environemnt. It made her daughter sicker. Eventually, they were able to move her. My point however is that the parent, patient advocate, was able to move into that house and do remediation herself and never got sick.
So for all these reasons I’m not too keen on this study, although I am happy it raised discussions. If you look on the journal website, Straus will be editing a special edition of the journal on mycotoxins. That could be a good thing if the papers they solicit and accept are a bit more rigorous than this one.
Hey, great analysis Jill – thanks for all the ihfo. Sorry about the surprise with the Facebook posts; I kind of assumed nobody would mind having FB posts being on the comments section because both are public arenas but thinking about it again, Facebook and the rest are two very different ecosystems. Sorry about that I won’t do that again. If you want me to remove those comments I will.
Thanks again for the insights into the study.
Yes, I think they might be searchable in different ways–when you post on one forum you kind of assume it wont be exported to another forum. You can leave it, but in future, I’ll probably come over here if i want to post.
Thank you, thank you! This article might be lifesaving to some people out there! I just had to move out of my house, as a result of mold toxicity. I literally couldn’t stay another day longer. It was only by the grace of God, that I had just met, Erik Johnson, a mold survivor, a few weeks prior. He told me everything that I needed to know. I never would have trusted my own bodily reactions to the mold. I really appreciate your writing on this subject!
Thanks Jackie. Glad you found an answer! I hope you’re doing well 🙂
Erik Johnson was part of the original defined illness cohort that the CDC investigated in Incline Village, was selected as a prototype to represent the basis of the “CFS” definition, and was approved for Ampligen treatment by Peterson. Erik has identified and publicly stated for decades that exposures to mold in what appear to be PPM quantities are responsible for mediating his symptoms, and that avoiding exposure at those levels can reverse them — something that I have personally corroborated with my own illness, which expresses all the symptoms of “CFS”. Erik’s findings and my results with his avoidance protocols have been included in Dr. Shoemaker’s published works, including the groundbreaking book, “Mold Warriors”.
You know, all these neuro-immune illnesses only recently (past 40-50 years) have become common place within the general public and especially in the last 20-30 years. Does it not astound anyone that the main changes during those times and forward was the beginning of the use of various compounds and chemicals that are now known to be poisonous in some form or another?
Not only that but compounds of all kinds including diseases themselves! Some toxins of which are still in use today even though it is known publicly that they are highly toxic. Just google ‘Fabric Softener’ along with the word ‘NEUROTOXIN’. Should give you a list of at least a dozen items. Just this ONE product.
All of these “advances in technology” have been introduced relentlessly into our living environments and experimented with heavily before and since the ‘Great War’! Well we can see the incubation period for altered gene expression, microbes, and/or other biological changes that now baffle the doctors, patients, and some of the scientist….not many. The hard part is figuring out how to get a handle on them and ultimately control them…..most likely with another laboratory created spliced and diced multi specied, multi king-domed, oh but all so harmless, MONSTER! This has been ‘their’ track record thus far.
The many, many uses of petroleum based products of all kinds and combinations that makes up just about everything we own is just one aspect. Most of what is used to construct our homes and places of work besides lumber (which does not escape the wraths of progress because it also has been treated) and different metals(minerals) are composites of MANY differing elements. Now when you start mixing these all together…..with LIVING organisms no wonder we have Autism, MS, Parkinson’s, CFS/ME, etc. which are so prevalent and accepted almost as normal these days.
Every combination imaginable has been ‘tweaked’ by man. It must be no surprise to most of us why there are these STEALTH diseases. Multi-symptomed BECAUSE they are multi-SOURCED! And that doesn’t necessarily mean that they are from multiple sources either! The combo-meal-deal is already ‘fixed’ and living symbiotically just waiting for it’s next host. Very few tangible items are pure and most everything is some combination, fused/genetically-altered and/or applied substances, of one or more species and/or kingdoms in nature. All by the hands of the MOST intelligent species that ‘controls’ this earth!
There is so much more that I could expand on but I think you are seeing the bigger picture. It sure helps that Cort is placing the information before us from many sources and modalities. If you take a look at what has changed the most over these particular years and even earlier, if you really want to open up a can of worms, you can pull all the information together…do some further research and check it out for yourself. Or if you are to sick like most of us you must rely on others for accurate and reliable information to help better understand the conundrum we are all in. The fact is it is all the information is there. Hiding in plane site. Some of it is even spelled out for you….it’s unbelievable!
The scientist are NOT stupid and neither are the many, many, many, governing bodies/organizations and systems that make up this one country. It’s staggering!
The information is all there……in the open, you just need to look. But let’s say even if you didn’t research any of this. Can you not place these things all together and understand what is taking place and what continues unabated without your consent nor understanding?!? I didn’t know any of this before I got sick. But I am inquisitive and this illness is too bizarre (symptom-wise) even the way it has been handled and CONTINUES to be handled should throw up MANY red flags! This disease as well as others are anything but normal and this does concern me as well as the future population. If we are not willing to come out in the open and explain the what, why’s, and where’s it’s going to take that much longer to straighten this whole mess out.
This is THE generation of the greatest and steepest learning curve…EVER! It will be slow moving for changes where some of us can see clearly why and what needs to happen in order for us as humanity to turn this whole thing around. Technology is one thing…I’m all for it. But please lets take precautions and lets be ethical and moral……what’s the GREAT rush?!? This planet has been around for quite a long time and will continue to be….with or without us. We are not the only and most important game in town sorry to say.
Do I have faith in people who are in places where these ‘ethical’ changes can swiftly be made and for the benefit of all? I’m not too sure I want to answer that question for I know throughout history how slow to react society is as a whole especially when they are blindfolded. And also how far we have ventured off course into unknown territory with nothing but the utmost recklessness.
I pray everyday that the truth will come forward and the continuation of this ‘meddling’ with nature stops…. immediately! For everyones sake. All kingdoms are welcome.
I recently talked to someone who’s read Dr. Shoemaker’s stuff and was really interested to learn that he believes ME/CFS is associated with inability to detoxify substances and he has tests that indicate that. Could people with ME/CFS patients simply be poor detoxifiers???
I hope to try cholestyramine at some point.
Sorry if I was off the subject Cort. But this mold toxin news has been around since the late 90’s. I think his book came out about 1999. I have read his book and watched his videos on youtube and just added it to the other findings. Not the end all to what WE are all processing just another piece of the puzzle. It’s all there my friend….nothing to fear just a clear and honest view.
And the Tibetan Buddhist call this particular age the ‘age of degeneration’.
Thanks for reminding me Ron…I forgot to check for video’s. I put one of Shoemaker on the blog. I must say he’s quite convincing…:)
AMEN. do you know one polices these chemicals and monsanto rules this area with pesticides etc. Suavietel put me in the hospital but my mexican neighbors refuse to stop using this crap. Dryer sheets are impregnated with over 50 chemicals know to cause cancer if heated. My soapbox, no pun intended is worn out. 🙂
What needs to be addressed here is the inversion of this evidence vs. diagnosis. It is more appropriate to say “Mold Illness exhibits symptoms that are commonly misdiagnosed as Chronic Fatigue Syndrome.” Which is a topic unto itself.
BTW, I have taken Cholestryamine for years, Cort. This therapy — in conjunction with effective mold avoidance protocols — allowed me to return to work fulltime.
Whoa….that’s good to hear…
(you’re going to get an email from me)
I’d prefer if we kept things public, so that your readers can benefit as well?
Congratulations on being able to work full time 🙂
Would you be interested in contributing to this project/
As part of a treatment overview I’m documenting what has worked for individuals who have gotten well or nearly well. While recovery is not common it does happen and we want to find out how.
If you’ve recovered or have mostly recovered please give us your stories. If you know someone who’s recovered please let them know about this project (or give us their contact info and we will contact them.)
Neither your story or your contact information will be made public without your permission. Basic information (see below) about your recovery will be entered into a spreadsheet which will be made public. You can remain anonymous or use a pseudonym.
Some of the things we’re looking for include
Type of onset
Age at onset
Degree of debility at its worst (how sick were you?)
Length of illness
Degree of Recovery
Comments/Advice for others
Cort, I think all of the questions listed above can be answered by reading the following transcript of the testimony I made before members of Congress in 2004. Please let me know if there is anything that needs clarification. Thanks!
See any symptoms or reactions from doctors that look familiar here? The following text is from FDRC founding member Jonathan Lee Wright’s testimony in a speech given before the US House of Representatives during a staff press briefing supporting Mycotic Disease Awareness Week, September 21, 2004. Rayburn Bldg, Washington, DC. Wright spent over 300 nights camping outdoors in 2004, in an attempt to recover from mold poisoning in a Salida, Colorado apartment years before.
I AM HERE TODAY TO ASK FOR YOUR HELP. WE NEED TO RAISE AWARENESS IN THE MEDICAL PROFESSION AND IN OUR GOVERNMENT ABOUT “TOXIC MOLD”. I AM AN AFFECTED PERSON. THIS IS MY EXPERIENCE.
IN JUNE OF 2000, I MADE THE LARGEST SINGLE MISTAKE OF MY LIFE. I RENTED A BASEMENT APARTMENT IN A HOUSE THAT WAS APPARENTLY FULL OF PATHOGENIC MOLDS. THE EFFECTS OF EXPOSURE TO THIS HAS CHANGED EVERY ASPECT OF MY
SINCE MY EXPOSURE, I HAVE ENDURED 4 YEARS OF INTENSE SUFFERING AND DEBILITATING HEALTH PROBLEMS. I’VE HAD CRIPPLING ARTHRITIS IN MY EXTREMITIES, CONSTANT DIAHRREA, MIGRAINE HEADACHES, CHEST PAIN WITH
HEART ARRYTHMIAS, LIVER PAIN WITH DARK URINE, BLURRED VISION, MENTAL IMPAIRMENT THAT MAKES EVEN READING DIFFICULT, CRUSHING FATIGUE, NERVOUS SYSTEM EFFECTS, NUMBNESS AND TREMORS IN MY EXTREMITIES, HIVES, BRUISING AND RASHES.
THIS IS NOT AN ALLERGY.
I HAVE CONTACTED SEVERAL DOCTORS. DESPITE MY CONCERN THAT MY SYMPTOMS WERE CAUSED BY MY EXPOSURE TO TOXIC MOLD, I WAS TOLD THERE WAS NO BASIS FOR THIS ASSUMPTION WHATSOEVER.
I HAVE SINCE HAD BLOOD TESTING DONE BY SPECIALISTS THAT SHOW AM WILDLY REACTIVE TO THE TOXINS FROM CERTAIN MOLDS. HOWEVER, THESE TESTS ARE ACCEPTED BY ONLY A MINORITY OF TRADITIONAL DOCTORS.
I HAVE BEEN ABLE TO AVOID CONTINUED PROBLEMS WITH INDOOR MOLDS BY TAKING THE EXTREME STEP OF ABANDONING MY HOME, AND LIVING OUTDOORS ALMOST
FULLTIME FOR THE LAST TEN MONTHS, CAMPING THOUGH A WINTER IN NORTH AMERICA.
I AM LUCKY, BECAUSE I HAVE RECENTLY GOTTEN ALMOST COMPLETE REMISSION OF SYMPTOMS THROUGH THIS “EXTREME MOLD AVOIDANCE” LIFESTYLE. WHEN I’M HEALTHY AND IN A NON-REACTIVE STATE I CAN ENGAGE IN VIGOROUS ACITIVITIES
LIKE MOUNTAIN BIKING AND ROCK CLIMBING. BUT WHEN I’M AFFECTED BY EXPOSURE TO MOLDS, I HAVE DIFFICULTY WALKING WITHOUT PAIN.
I’M NOW SO SENSITIVE TO INHALING MINUTE QUANTITIES OF INDOOR MOLDS THAT I CANNOT TOLERATE BEING IN MANY, IF NOT MOST, BUILDINGS AND RESIDENCES
IN COLORADO. THIS HAS HAD A HUGE IMPACT ON MY LIFE, AND HAS CAUSED THE SLOW DECONSTRUCTION OF MY HEALTH, WORK, RELATIONSHIPS, AND FINANCES.
PRIOR TO MY DISORDER, I WAS A WELL-PUBLISHED PROFESSIONAL PHOTOGRAPHER, WITH A SPECIALTY OF ADVENTURE SPORTS. I FELT FULFILLED IN MY CONTRIBUTION TO THE PROMOTION OF HEALTHY LIFESTYLE THOUGH MY IMAGES.
HOWEVER, SINCE MY OVEREXPOSURE TO MOLDS, I AM NOW FACED WITH THE REALITY OF LOSING MY HOME, POSSESSIONS, AND EVEN MY STATE OF RESIDENCE, BECAUSE I AM CONSIDERING MOVING TO ANOTHER REGION TO TRY AND OUTRUN THIS.
I HAD TO LEARN EVERYTHING I COULD ABOUT MOLD IN ORDER TO SURVIVE. IN DOING SO, I HAVE FOUND MANY OTHER PEOPLE WHO HAVE ARE EXPERIENCING PROBLEMS LIKE I HAVE AFTER BEING EXPOSED TO MOLDS.
MANY OF THESE ARE CHILDREN AND THE ELDERLY. THEY CANNOT LEAVE THEIR HOMES AND GO LIVE OUTDOORS LIKE I DID TO GET BETTER. AND THEIR DOCTORS DON’T EVEN KNOW WHAT’S WRONG WITH THEM. BY AND LARGE, THE MEDICAL
COMMUNITY SEEMS TO BE UNABLE OR UNWILLING TO ACKNOWLEDGE THIS DISORDER.
I CONVEYED THE CONTENT OF THIS MESSAGE TODAY TO EVERY RELEVANT OFFICE AND AGENCY IN MY STATE. DESPITE WHAT I CONSIDER TO BE A PRETTY ALARMING MESSAGE IN LETTERS AND CALLS TO CITY PLANNING OFFICES, COUNTY HEALTH AND
ZONING DEPARTMENTS, THE STATE BOARD OF HEALTH, BOTH OF MY STATE SENATORS, MY STATE ATTORNEY GENERAL, AND MY GOVERNOR — ALL HAVE EITHER REFERRED ME ELSEWHERE, OR HAVE IGNORED MY CRIES FOR HELP ENTIRELY.
MY EXPERIENCE TELLS ME TOXIC MOLD IS A PUBLIC HEALTH THREAT THAT MUST BE ACKNOWLEDGED AND ADDRESSED BY THE STRONGEST POSSIBLE MEASURES. HOWEVER,
THERE IS EVIDENCE THAT THERE IS PARTISAN EFFORT BEING MADE TO DISCREDIT THOSE SICK WITH THIS DISEASE, AND TO DISMISS THE EXISTENCE OF THE ISSUE ALTOGETHER. IF ALLOWED TO CONTINUE, I FEAR DISEASE FOR THE PUBLIC AT
MY EXPOSURE TO TOXIC MOLD AND MY CONTINUED SENSITIVITY HAS CHANGED MY LIFE, AND NOT FOR THE BETTER. SO I HAVE TRAVELLED ACROSS THE COUNTRY TO ASK FOR YOUR HELP.
WE MUST CHANGE OUR GOVERNMENT’S AWARENESS AND RESPONSIVENESS TO THIS NATIONAL HEALTH EMERGENCY. WE MUST DO EVERYTHING WE CAN TO HELP THOSE WHO ARE AFFECTED AND PREVENT OTHERS FROM BEING EXPOSED, BECAUSE THE NEXT PERSON WHOSE LIFE IS RUINED COULD BE YOU, OR SOMEONE YOU LOVE.
You made it through a winter outdoors. I know what that’s like (I spent several of them outdoors) although it was in central California – big difference from Colorado. I’ll incorporate it in the Recovery/recovering stories project.
I became ill in 2002. I am currently working full-time. I wouldn’t consider myself 100% well, but with modifications have been able to work. I would be glad to share more information if you would like for your project.
I’d love it Michelle – thanks….Please send the info to email@example.com. Congratulations on your partial recovery and I hope you continue to improve.
My goodness. Cort, I’m surprised at your response to my post. As someone who is attempting to position himself as a thought leader on this issue, I would have thought that the point of interest for you was not how to winter camp but rather that THIS TESTIMONY WAS MADE ALMOST NINE YEARS AGO BEFORE MEMBERS OF CONGRESS.
Why are you doing this?
Could you take a look at my question I posted today, April 15. You may or may not have an answer. Just curious.
Also, Cort, speaking of a winter outdoors. We camped for a month this winter, sometimes the days were 70, sometimes the nights were 28–I really enjoyed the cold, and became fairly cold adapted and resilient, wearing minimal fleece and even my slipon thong shoes. It is really not hard to camp in winter. It’s only hard because you imagine it to be. As a species we are mainly meant to adapt to seasonal changes not live in climate controlled 72 degrees year round. That is probably pretty unhealthy for us. It may be better to be exposed to seasonal variation in temperature and particularly we may be primed genetically to adapt to cold and it appears to boost immunity, lower inflammation and trigger more antioxidant production. Just as our foods should change seasonally–of course there will be genetic variability here depending on your ancestry.
I know a good person to interview who feels she has gone from 2-3 on an ME scale to 7 simply by doing cold adaptation (cold thermogeneisis), some mold remediation, sleeping outdooors in her yard when she can, and some other things, but it’s the cold thermogenesis she feels that mainly did the trick. You can PM me on FB and I’ll give you her name.
I lived in an apartment in FL at the time of acute onset of the illness. I became suspicious that the place, which was poorly cared for and in which severe leaking from the air conditioning was never fixed, had mold. Every time that the A/C turned on, I got extreme headaches and more flu-like symptoms. The A/C was on almost continually, every day of the year, due to the location – I suspect mold may have been in the air ducts. Due to financial catastrophe after having to give up my career, I was forced to move, which was incredibly difficult as I was bedridden. I moved to the North, into a house that was very dry, had no smell, and had an industrial dehumidifier in the basement – definitely mold-free. All of my possessions, my paperwork, my clothes, all reeked terribly when I arrived – finally it was clear that this had not been in my head, the repeated insistence of the apt. management that nothing was wrong had been false.
Since a month or so after moving, my health has significantly improved. It has been nearly a year now, and that improvement has leveled off. However, I would like to note that this appears not to be the cause of, nor the ultimate cure to, my M.E. First of all, I have a strong family history of immune disease/Lymphoma and Fibro – the illness is very likely genetic for me, and during my entire life before acute onset, although I was very active and relatively healthy, I struggled with immunodeficiency. Second, I lived in the apt. for an entire year, although uncomfortable with the strong smell (I was told this was due to a new carpet being put in before my arrival – nonsense), with no onset of illness. Third, I became ill within two months after a severe trauma, after I did feel as though my body was physically collapsing from the weight of it. And 4th, now that I have relocated I have far fewer extreme flu-like symptoms of illness, but my Fibromyalgia symptoms, my extreme exhaustion, my autoimmune reactions like IBS and occasional rashes, etc., and my poor immune numbers and enlarged lymph nodes remain the same. I am still mostly bedridden. However, much of the blinding headaches and sore throats, and constant low-grade fevers, etc., have disappeared.
I believe that as my goal is remission, it would never have been possible had I not been forced to leave my home. It may still not come, but my body is now far less constantly taxed by my physical environment than it was. A note, like many nowadays who live in apts, there is also possibility that the apt next to mine was being used as a Meth Lab. I urge anyone living with strong chemical smells or suspicion of drug activity to learn about the signs and serious effects of Meth Lab exposure. If you live in a home that appears to be making you sick, for any reason, do whatever you have to do to fix the problem, and if you have no control over it, MOVE to a place where you have more control or better chances. In my case, neither mold nor possible Meth lab exposure explains the onset or continuation of my M.E., but it certainly made things a whole lot worse, and was clearly contributing to the constant onset of new symptoms and general health deterioration. I will have to move again soon, again due to finances, and I am very mindful this time of having a mold inspection and immediate professional treatment if needed, as well as other tests to ensure the place is safe. If I get sicker when living there, this time I will believe my instincts and leave before I get too attached. I urge anyone else who is sick from their home to do the same – it feels impossible to move, especially when you are by yourself and have no help, but the difference it makes in your daily experience can be worth the temporary extreme crash. Seriously consider it.
Question about the toxic mold issue. As a young child in elementary school, I was sick constantly. I am now 43 and been very ill with CFS/ME for the last year. Prior to being very ill, I was about 50%. My elementary school was condemned years ago due to toxic mold.
Apparently, the school was aware of the mold issue even when I attended, but back in the 70s, no one was concerned.
I am curious if this early exposure could still be effecting me? Or worsening my CFS/ME.
Donna, it’s my understanding that prior exposures to mycotoxins can cause priming of the immune system for reaquisition of symptoms and additional upregulation with subsequent exposure. So, in regards to your first question, yes.
However, I need to clarify my position that I believe that the diagnosis and entire illness that has been titled CFS/ME is a political construct that is driving ongoing contention in research and treatment.
Jonathan Lee Wright,
Thank you for your response. Your answer was what I had suspected given my life post exposure. And, as to paragraph 2, I am at the point of not knowing what to believe. All I know is I am getting sicker and sicker. I have lost a wonderful law career, financial security for my family. But most importantly, I have lost my ability to be a part of my family’s active life. My nearly 5 year old has lost his mother and a sick woman has replaced her.
Cort, can you please clarify who the authors of the study you are citing here were, and what their qualifications and professional associations are? Thanks!
Cort, Thank you for your analysis. Is a link to the actual article you analyze available?
Th article is by Dr J Brewer, and Infectious Disease doc in Kansas City. Does anyone know how he treats mold toxicity once a patient tests positive?
Thanks very much for covering this study demonstrating an apparent link between CFS and presence of mycotoxins. For those interested in reading the study, it can be found at the following link.
The patients in the study were from the practice of Dr. Joseph Brewer of Kansas City. Although Dr. Brewer has been well known in the CFS community as focusing on viruses and Lyme disease, on this blog and elsewhere a question has arisen as to whether he actually was a mold specialist and thus whether findings from his practice can be considered to be generalizable to CFS patients as a whole.
It’s my understanding that this rumor originated because the googling of Dr. Brewer’s name turned up the following reference, from the March 9, 2012, newsletter of the Global Indoor Health Network newsletter:
“Please join me in welcoming our newest member. Dr. Joseph Brewer is an Infectious Disease physician located in Kansas City, Missouri. He has an interest in the clinical aspects of mold illness, disease associations, diagnosis and treatment.”
Quoting from the publication, it is clear that Dr. Brewer joined this organization (which some of his co-authors such as Dr. Thrasher are involved in) after starting on this research project:
“The study was conducted for 6 months from 1 February 2012 to 31 July 2012. Patients with chronic illnesses, many of whom were previously diagnosed with CFS, were seen in a private practice (JHB) which is a consultative outpatient infectious disease clinic in Kansas City, Missouri. Out of approximately 300 patients with chronic illness that were seen for routine follow up clinic visit, 112 met the criteria for a diagnosis of CFS as outlined by Fikuda, et al. in 1994 .”
To clarify further, I wrote to Dr. Brewer and asked him about this rumor. Following is his response, which he stated that I should feel free to share publicly. I hope that those reading this will feel free to share the information themselves.
Thanks again for your coverage of this topic.
Lisa Petrison, Ph.D.
Although I am an infectious disease specialist, I had no focus whatsoever on “mold issues.” Prior to February 2012 (when I first heard about the urine mycotoxin assay at RealTime Laboratories) I didn’t even have an interest in mycotoxins or environmental illness. These findings surprised me as much as anyone as the results began to unfold last year.
These patients were all randomly tested. These are long standing patients of mine that were previously diagnosed with CFS / ME (basically “average CFS patients”). We simply discussed the test and offered it to them at routine follow-up clinic visits. Very few suspected mold illness until I brought it up at their routine visits.
We only found that they “lived / worked in buildings with visible mold” after we asked. Some patients didn’t even remember the exposure until we prodded a bit (mainly because the exposure had been so far in the past – such as an apartment they lived in college).
I now see patients every week that are shocked when I bring up mold. They have very impressive exposure histories but no one asked.
If these CFS patients who are on the blogs get tested, I suspect ~ 90% will be positive. A doctor from the East coast has found almost identical results to mine in their cases (90% positive). Same for a physician on the West coast.
Anyone that sends a specimen to RealTime Lab must pay for the test “up front” but many of the patients ended up getting reimbursed (at least for most of the testing cost) from the insurance. They were not biased since most were hoping to get reimbursed.
I think is hard for people to get their “arms around this” and want to implicate selection bias but that simply was not the case.
I hope that helps.
Joe Brewer, MD
Do you know how Dr Brewer treats patients who test positive for mold toxicity, Lisa?
Dr. Brewer has begun treating his patients for issues related to mycotoxin poisoning, though I don’t know anything the specifics of what he is doing. Other doctors who have experience treating mold illness are listed here.
Just curious what you think about something. Dr. Mady Hornig showed a connection between teenage marijuana use and schizophrenia. Evidently there has to be a particular gene that can be manipulated, then a triggering event (pot smoking) and then the disease comes on (schizophrenia).
I wonder if ME/CFS works in a similar fashion? Let’s say there’s a gene involved (I’ve heard up to 25% of the population has this for mold), then a a virus attacks the body, triggering the gene to be susceptible to mold and finally mold exposure happens, making the person sick and unable to recover.
I’m trying to tease out the meaning in your statement: “For me, living in the desert did improve my symptoms nor did living in the more moldy south make them worse but I definitely have to limit my exposures to moldy houses.”
I’m wondering if there’s a typo in there. What’s confusing me is the world “nor” in your sentence.
Did you really mean to write: “living in the desert *didn’t* improve my symptoms nor did living in the more moldy south make them worse”?
I’m asking because in addition to my CFS symptoms I’m also severely chemically sensitive (and allergic to mold) so I’ve been contemplating moving out of moldy Seattle to a desert climate.
I’d be grateful if you could clarify for me if living in the desert did in fact improve your symptoms.
Will in Seattle
a.k.a. “That Masked Man”
Hi Will – yes, you got it right. Living in the desert did not improve them and living in the south did not make them worse. I want to point out though that I know of several people who have improved tremendously by going to the desert, at least for awhile. I still have quite a few problems with MCS but I have improved tremendously over time. All I’m doing is trying to settle my body down through meditation and mindfulness exercises – that seems to slowly help. I also used to frequently sniff the air to see if bad odors were present. I never do that anymore. Baraniuk’s research suggests that may inflame the receptors in the nose – making things worse.
You bring up some very useful information in the post. I work as a mold damage San Diego removal specialist and I have seen many people become sick over the years from waiting too long to have mold damage looked at. I used to live in Arizona and I only had a few customers become sick from mold, definitely had to do with the lack of moisture in the air. Thanks for the info!
Paradigm Change is a new not-for-profit organization with the goal of producing and disseminating quality information about neuroimmune disease and environmental toxicity.
In particular, we focus on Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Toxic Mold Illness, Chronic Lyme Disease, Gulf War Illness, Autism Spectrum Disorder, Fibromyalgia, Environmental/Food Sensitivities and other related conditions.
Although we are interested in toxins of all sorts, biotoxins (poisons made by environmental molds, cyanobacteria and other microorganisms) are a particular focus.
Our goals are:
1. To provide credible, factual information to journalists, medical researchers, doctors, healers, courts, attorneys, employers, schools, advocates, patients and the general public.
2. To fund high-quality research looking at whether biotoxins may be a risk factor, a progression factor or a cause of specific neuroimmune diseases.
The website address is:
This is the start of something big!! It’s all about fungus and mold. Mine is inner fungus growth due to antibiotic therapy, but I do work in intensive care where the radiation will kill bacteria and we clean extensively with chlorclean that kills bacteria. The amount of illness in ITU in staff is scary; from irritable bowel to cancer. Please do more research and get these areas changed to save our next generation from fungus. Thank you
Why is it so hard for people to understand? It’s not like this is something new…we are getting sick and need answers! Our experience has left us with nothing and we can’t seem to get pointed in the right direction to make a change.
I dream of a day when we aren’t thought of as “crazy”
We have a lot of information…
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