CFS/FM: How Do I Know If I Have A Toxic Mold Problem? | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

CFS/FM: How Do I Know If I Have A Toxic Mold Problem?

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A number of people have asked me how to know if a toxic mold problem might be a factor in their illnesses.

Following are some things that seem to be to be clues. Perhaps others who know something of mold poisoning can add their thoughts.

I also am including lists of symptoms for the presence of poison mold and lyme toxins. While there is a lot of overlap between the two lists, I personally found that my symptoms were much closer to the toxic mold list.

Another differentiating factor seems to be that people with lyme sometimes have spontaneous remissions and then relapses.

Those with toxic mold problems from their home or workplace seem not to have as many spontaneous remissions/relapses, even if they move from one building to another or change jobs. Part of that seems to be that mold poisons on possessions continue to cause problems in new environments even if mold is not present.

It is certainly possible to have biotoxin problems with both poison mold as well as lyme. A diagnosis of lyme shouldn't necessarily provide reassurance that mold is not an issue. (I personally would be especially suspicious that mold also might be an issue if long-term lyme treatment has not provided substantial improvements.)

Again, this is a first stab at a list since I've not seen a comprehensive one compiled anywhere else. The items on the list come from lots of different sources, with most not yet scientifically "proven." (Almost no research has been done yet into mold toxicity.)

It's important when considering the factors below to think about the places that you have lived or worked immediately prior to getting sick as well as all the places that you've lived/worked since then.

Removing oneself from a building containing toxic mold in itself will not necessarily cause people with CFS to get a lot better. On the other hand, those who already have CFS (from whatever cause) may suffer a deterioration in their health when moving to a place containing toxic mold.

All homes and workplaces where exposure might have occurred since the time of the illness should be considered, therefore.

Clues that you might have problems with toxic mold:

* Someone else previously or currently living with you (including a pet!) has unexplained health problems (CFS, fibro, ADHD, MS, autism, unusual tumors, "liver problems," repeated miscarriages, SIDS, thyroid problems, depression, "just plain tired")
* You work (or previously worked) in a place where a lot of people often got sick, seemed really tired, or suffered from illnesses mentioned in the above item.
* You fail or do poorly on Ritchie Shoemaker's Visual Contrast Test (google for his Web costs $15 to take the test)
* You feel _different_ (though not necessarily better) when away from the house for several days or more. For instance, you sleep more deeply or for longer periods of time rather than having as much "agitated exhausion." Or you alternate while you're away between feeling pretty good and being dead tired.
* You feel especially tired and bad when you return home from a trip (possibly attributing it to "crashing" from the accumulated stress or from being depressed that you're no longer on vacation)
* When away from home, you find that you do best at the seashore, high in the mountains or in the desert
* You have a very hard time dragging yourself out of the house (e.g. to go out to dinner or for another relaxing activity) but feel better for a while once you do go out
* You have Multiple Chemical Sensitivity or are quite sensitive to artificial chemicals (especially ones in the air such as artificially scented candles, air "fresheners" or cigarette smoke)
* Visiting stores like Wal-Mart or Home Depot feels especially unpleasant to you, though you're not sure why
* You have moved from the home or workplace where you first got sick, but still have some stuff from that place (especially paper/books, clothing, mattresses, upholstered furniture or other fibers) with you.
* You or someone else has noted that it seems like there's something wrong with the air in your home or workplace, but have blamed it on something like cigarette smoke, the presence of a pet or poor air circulation.
* You are aware of a water event having happened at some point in your home or workplace. This could have been even a small amount of flooding (e.g. from a broken air conditioner) or a burst/leaking pipe where the water problem was not addressed within 24-48 hours
* A water event like this at any time during your illness was followed within a relatively short period of time (e.g. a year) with a decline in your well-being.
* You live in a neighborhood where homes are known to flood easily
* Your house has/had a basement or laundry room (especially if below ground) that you don't "monitor" very closely for water problems or wall discolorations.
* You have/had cracks or water spots on your ceilings and haven't taken steps to make sure that mold is not a problem in those places.
* Your home has/had a flat roof.
* When it rains hard, water outside (e.g. on a sidewalk) runs/ran in the direction of your house.
* You work (or used to work) in a building that you know or suspect has had water problems.
* You work (or used to work) in an "airtight" building where none of the windows open and the air often feels stale.
* You work (or used to work) in a building with a flat roof.
* You work (or used to work) in a building that you suspect was poorly built or maintained.
* You work (or used to work) in a government building or public school.
* You work(ed) or live(d) in a building without air conditioning in the summer, meaning that humidity and heat got very high.
* Your house or workplace is/was very well insulated or sealed, allowing little air circulation from outside.
* Your house or workplace uses an HVAC (ductwork) system rather than radiators.
* You live/work in a building with walls made of drywall, fiberboard or other cellulose-based products. Even if most walls are plaster, check especially in rooms where water intrusions might occur (like in basements or laundry rooms).
* You have paneling in your home, especially in a room below ground like a recreation room. (Mold grows easily behind paneling.)
* You live in a house that is more than one year old. (New houses are no less likely to have toxic mold problems than older ones. In fact, the combination of high amounts of cellulose products and poor design/construction may make many newer homes---including expensive ones---especially prone to toxic mold problems.)
* If you own(ed) your home, you have noted over time design or construction issues that you wish that the original builder had handled differently.
* In carefully examining your home, you note dark smudges on the wall that look more like dirt than mold.
* You previously noted dark green or black mold growth (e.g. on a wall or carpet) in your home (maybe but not necessarily after a water event) but believe you've "gotten rid of it all."
* You or others have noted the smell of mold in your home or workplace. (Note: it is not necessary to smell mold in order to have a major toxic mold problem, and many buildings that smell of mold do not have poison mold. This is just a clue.)

A good test to see if mold is an issue with regard to your current home or your belongings is to take a break from them for a couple of weeks. (This means not bringing any of your stuff with you. Clothing and other necessities should be purchased or borrowed for the test period, and not brought into the suspicious dwelling before the test.) You may or may not feel more well when you are away. However, if the dwelling or its contents are a problem, you may well feel a lot worse when you return to the home. If so, something in the home (most likely mold) is a problem.

[This Message was Edited on 01/17/2008]


New Member
Following is a list of symptoms attributed to toxic mold. I've seen this same list in a variety of different places.

Poor memory
Trouble concentrating
Trouble learning
Trouble finding words
Trouble handling numbers in head
Trouble speaking fast
Trouble with understanding fast verbal info
Vocal or Motor Tics
Serotonin changes
Abnormal reflexes
Edema or swelling in the brain
Scarring of Brain seen on MRI's
PET and SPECT scans show hypoperfusion
EEG abnormalities

Mood swings
Increased risk taking
Decreased speak smoothness
Poor stress coping
Increased verbal fighting
New lateness
Poor empathy
Poor boundary awareness
Poor insight
Poor insight into illness
Decreased productivity
Unable to process trauma or interpersonal pain
Increased narcissism
Poorly organized or obsessively organized
Dead creativity
Panic Attacks
Decreased attention
Eccentric personality
A delay in a child's developmental milestones
Increased alcohol consumption or increased drug use

Light sensitivity
Red eyes
Blurred vision
Eye pain
Burning eyes
Low visual contrast (difficulty seeing/reading)

Sound sensitivity
Decreased hearing

Metallic taste
Saliva with blood streaks

Chronic infections
Tingling nose
Nasal itching
Stuffy nose
Runny nose
Blood streak in saliva or nasal mucous

Erosion of membranes
Shortness of Breath
Sore throats
Cold or Flu symptoms
Chest pain
Voice changes

Sloughing and death of intestinal villi
New Reaction to wheat or dairy
Belly pain
Bile duct disease

Fatty liver
Liver cancer
Abnormal liver lab tests
Jaundice or yellowing

Hair loss
Diverse and severe rashes
Biopsies with no clear cause
Burning skin sensation

Joint pain
Cartilage damage
Muscle Aches
Delayed Recovery
Sharp Stabbing Pains
Lightning Bolt Pains
Morning Stiffness

Heart Muscle damage
Heart muscle inflammation
Chest pain
Abnormal ECG
Red or pale skin

Increased Testicular cancer
Vaginal irritation
Decreased sperm production
Erectile dysfunction
Decreased sex drive
Irregular or stopped menstrual cycle (when not menopause)

Low Free Testosterone
Low Androstenedione
Low Cortisol
Abnormal cortisol regulation
Damage to Adrenal glands (Makes Cortisol, DHEA and ADH)

Eccentric weight gain
Low Motivation
Occasionally eccentric thinness
Bizarre pain
Ice pick pain
Lightening bolt pain
New chemical sensitivity
Spinning sensation/Dizziness
Increased thirst
Frequent urination
Shocking sensation (e.g. when touching light switch)
Temperature variation
Appetite swings
Easy bleeding or bruising
Trouble walking or running easily
Reduced coordination
Rapid pulse
Low temperature
Jerky movements
Abnormal Blood Pressure (low or high)
Post Exertional Exhaustion
Increased tumors

Liver tests are abnormal
Liver growths that do not have clear biopsy results
Increased creatine-kinase level
Blood glucose too high or too low
Low or high white blood cells
Increases Eosinophils
Blood in the urine
Inflammation labs are high, e.g. TNF-a, C-reactive protein, C3a
Immune system function problems
Bone marrow labs abnormal
Natural Killer Cells that kill cancer decrease in number
Epstein Barr virus, present in everyone, has high levels
Auto-immunity labs which show the body is attacking itself, are abnormal, e.g. ANA, ASM, MBP (blood), Myelin antibodies from Spinal fluid
Red Blood cell abnormalities
Homocysteine over 10
Depressed Immunoglobulin (antibody) levels
Macrophages do not work correctly

Fetal abnormalities (Birth defects)

Decreased Protein making
Decreased DNA manufacturing
Decreased epinephrine, adrenaline, norepinephrine and dopamine

[This Message was Edited on 01/17/2008]


New Member
Symptoms of Lyme Disease (From The Canadian Lyme Disease Foundation)

20 yes answers represents a serious potential

THE TICK BITE (fewer than 50% recall a tick bite or get/see the rash):
Rash at site of bite
Rashes on other parts of your body
Rash basically circular and spreading out (or generalized)
Raised rash, disappearing and recurring

Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in Head, White Matter Lesions in Head (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm, hoarseness, runny nose

Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes

Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears

Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)

Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage

Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness

Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety

Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks

Loss of sex drive
Sexual dysfunction
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain

Unexplained weight gain, loss
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Low body temperature

Increased affect from alcohol and possible worse hangover



New Member
It seems quite comprehensive.
One of the things I noticed strongly during prolonged exposure (before I knew what was wrong and sat in a moldy house for months) is an overall feeling of being hooked up to a poison drip. The feeling of toxicity was nauseating. It developed to include a sensation of boiling blood, or perhaps broken glass travelling through my veins. I literally wanted to rip my skin off.

Now it seems I respond to a mold hit within 15 minutes are so. The clues seem to be brain compression followed almost immediately by a slight souring of disposition. Continued exposure brings a dreadful headache, light sensitivity, stiffening of all muscles, and nausea.

Some of the other symptoms I've experienced are excessive drooling (lovely), and loss of ability to sequence (the steps to making a pot of coffee, etc.)





what a comprehensive list re: the mold issue! that must have taken some time and effort to put together. thank you, lisa.

i posted some thoughts on forebearance's thread, but i'll include one of them here and expand a bit.

i know there is mold in my house; i can smell it. the question is, is it the black toxic kind. i have seen something that resembles it in the damp bathroom ceiling which is made of wood. my mom washed it with bleach 2 yrs ago and it did not disappear totally.

it is a 200 yr old New England hay loft that was slowly, incrementally turned into a house between 30-50 years ago. it has tons of fresh air leaking thru it all the time. lots of cracks.

the basement is a below-ground-level gravel floor space, and then after crawling thru an opening, literally, it opens up to a larger dirt floor "room" (more like a space, not a room exactly). it is damp down there the way the earth is damp (dirt floor, and stone/dirt walls, after all). not wet, exactly, but earthy-damp.

i wonder if my house (with all its cracks allowing for fresh air), and the basement in particular, is a good or a bad environment for black mold to thrive...?

separately, the cellulose insulation in the exterior walls was blown in (or more likely hand packed in) anywhere from 30-100 years ago. it has all settled to the bottom and is more or less non existent in most parts of the walls, and thus doing nothing to keep the house warm in the frigid new england winters. so we were going to have more cellulose blown in. i wonder if you think this a bad idea as far as mold is concerned. (you mentioned cellulose as a material that encourages and retains mold.)

thanks in advance for yr thoughts!



New Member
Hi Rivka,

Less insulation actually is much better if you're trying to control toxic mold growth.

Black mold and other poison molds don't grow outside, and black mold grows better in stale air. I think (though am not sure) that part of this is because black mold has to compete with other stuff (such as bacteria and other molds) in order to grow. When there is fresh air, the other stuff has an edge. When there is stale air, other molds don't do as well and the bad molds (especially black mold) can take hold.

I agree that adding any kind of cellulose product to the walls or attic of a house would be a bad idea in terms of preventing mold growth.

Forebearance recently sent in a sample of mold from her apartment to see whether it's poison mold. THe cost for that analysis is $35. You might want to see whether she is pleased with that service and then consider testing your own mold, since it is visible.

I'm really glad that someone read this post!

Best, Lisa



thanks for yr thoughts, lisa.

i think we should keep bumping this thread up every few days, given how much good info is on it.