1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Toxic mold & xmrv poll

Discussion in 'XMRV Testing, Treatment and Transmission' started by Ecoclimber, Jun 11, 2010.

?

POLL: TOXIC MOLD AND XMRV

  1. Those exposed to Toxic Mold and tested XMRV +

    6.3%
  2. Those exposed to Toxic Mold and tested XMRV -

    12.5%
  3. Those exposed to Toxic Mold and are ME/CFS W/O TESTS

    81.3%
  1. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    640
    Likes:
    1,081
    Mercer Island Wa
    POLL: ON THOSE WHO HAVE BEEN EXPOSED TO TOXIC MOLD AND BEEN DIAGNOSE WITH ME/CFS

    1. Those exposed to toxic mold and tested XMRV +
    2. Those exposed to toxic mold and tested XMRV -
    3. Those exposed to toxic mold and have ME/CFS W/O tests for XMRV
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,456
    Likes:
    1,968
    London
    Do you mean exposure to toxic mould at the time one became ill or before becoming ill with ME?
  3. awol

    awol *****

    Messages:
    417
    Likes:
    0
    the problem I see is that a lot of people may not know if they were exposed and most have not been tested for this. Is there even a test?
  4. Robin

    Robin Guest

    What about people who have not been exposed to toxic mold and have ME/CFS?
  5. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    640
    Likes:
    1,081
    Mercer Island Wa
    During or before one became ill with ME/CFS, it doesn't make a difference
  6. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    640
    Likes:
    1,081
    Mercer Island Wa
    This is a survey for a population of patients who have toxic mold and ME/CFS, XMRV. It's purpose is to determine if there is a population associated with toxic mold, mold and ME/CFS for possible research studies
  7. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    640
    Likes:
    1,081
    Mercer Island Wa
    There is a test for Fungal sinusitis, Mycoplasma pneumonia, a microscopic organism related to bacteria and fungi. Sensitivity to mold can be tested at board-certified allergist doctor. The reason for the survery, was the fact that there were some threads and posts on this forum indicating a possible link with mold, fungi and ME/CFS. I was determining the extent of the problems with those who have ME/CFS and mold, fungi issues for a possible research study.
  8. awol

    awol *****

    Messages:
    417
    Likes:
    0
    I think it is a worthwhile thing to look at, just that the poll results might not relfect the reality of exposure in any way because people may not know.
  9. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon

    Ecoclimber, it's nice to see this thread on the board!

    Here are some thoughts with regard to the comments that have been made so far.

    Most people who are exposed to toxic mold don't know it. Frequently when they're looking for it in their homes or workplaces, it can be very well hidden. And there aren't any really good patient tests that give a definitive answer either.

    I thus think it's smart to just have this poll apply to people who know that they've been exposed. Otherwise the results might be skewed by people who don't know (yet) that they are being affected.

    I've written a couple of posts on ways in which CFSers might explore whether toxic mold might be a problem for them. The posts are on the following thread, which discusses the potential interactions between toxic mold and XMRV (and other viruses).

    http://www.forums.aboutmecfs.org/sh...l-Points-quot-Approach-to-Address-CFS-Viruses

    I'm going to request the liberty of re-posting them here so that people don't have to go looking for them.

    Insofar as we're talking about "toxic mold," it should be just about toxic mold growing in the environment.

    Allergy tests aren't helpful here, since many people have allergies to mold but have not been poisoned by it, and since many people (myself included) have been poisoned by it but have no allergic symptoms.

    Often times, people who have been poisoned by toxic mold are host to various pathogens. This especially includes candida or fungal infections, but also can include various viruses, bacteria and mycoplasma. Those aren't specifically diagnostic for toxic mold poisoning though.

    I'm interested in seeing the results. In addition, insofar as people have experiences with toxic mold, perhaps they might consider sharing them on this thread (or we could start a new one). I'm often amazed at how many CFSers know that they were affected by toxic mold but don't necessarily realize that it's a factor for them.

    Thanks much for starting this poll and thread!

    Best, Lisa
  10. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon
    Medical Tests Related to Toxic Mold Poisoning

    Here is some information about various kinds of tests related to whether individuals are being affected by mold illness.

    1. One kind of test panel is the one that Dr. Shoemaker has developed. It includes a number of measurements related to inflammation and immune responses. This includes measurements of various cytokines (such as MMP-9 and TNF), since that kind of inflammation seems to be related to toxic mold illness. It also includes measurements of various hormones (such as MSH, cortisol, leptin and ACTH), since those are thought to be affected by the presence of the inflammation and other negative effects brought about by toxic mold. Measurements of complement elevations (C3a and C4a) also are included, since those are thought to be related to current acute toxic mold exposures. VEGF, which is a chemical signal directing growth of new blood vessels, is also part of the panel. The HLA-DR genetic testing, which Dr. Shoemaker says that he has observed to be strongly correlated with toxic mold illness, also is included on the panel.

    These tests still are unfamiliar to many practitioners, but seem to be gaining acceptance. To my knowledge, Dr. Shoemaker has not published any papers verifying their reliability or usefulness. They are described in detail in Dr. Shoemaker's book "Mold Warriors" and on his website at www.biotoxins.info.

    2. Also on his website, Dr. Shoemaker makes available a test that he calls variously the VCS (visual contrast sensitivity) and the BIRS (biotoxin illness risk score). This is an eye test of visual contrast, which he states is a good detector of the presence of neurotoxins of whatever sort (not just biotoxins) in the brain. It can be completed online and serves as an initial screening device.

    My own personal experience and observations suggest that this is a useful screening device, but that it doesn't necessarily do a good job in ruling out mold illness in CFS sufferers. When I was living in my moldy house, I indeed did terribly on the VCS. At that point, my vision has declined to the point that everything looked dim and I could barely see anything to read inside. This was scary!

    During the couple of months after I moved out of my moldy house, my vision improved to the point where I could pass the VCS. I felt a bit better, but was not even close to being well. It only was after I visited Erik for a week and got really clear (and then started this ridiculous "extreme mold avoidance" thing) that my health really recovered.

    Most of the time now, I can pass the VCS. Sometimes, especially after I've had a good bit of mold exposure, I fail it.

    Dr. Shoemaker says although people who aren't suffering from biotoxin illnesses (which also can include things like chronic Lyme, dinoflagelites and brown recluse spider bites) shouldn't fail the test, those people who are having problems sometimes can pass it.

    The idea that I can pass the test even though I'm being affected by small amounts of mold toxin is consistent with one hypothesis about the role that toxic mold plays in this illness. Certainly, significant amounts of the neurotoxin itself (enough to affect the vision) can be present in CFSers who are suffering from mold illness. However, a hyperreactivity of the complement component (C3a and C4a) seems to be a more fundamental part of the problem, just as it is in people who suffer from peanut "allergies." This is more related to what the body does to itself when it senses the mold toxin than to the direct effects of the toxin. Why the body is going nuts when it senses tiny bits of this stuff is, in my mind, a key question that we need to answer about the disease.

    Interestingly, the C4a responses has been mentioned in other research related to CFS. I'm going to post an abstract related to that topic below.

    I certainly think that it's a good idea for CFSers to take the VCS. On its own or in combination with the ERMI, it can provide substantial information on whether people are living or working in really moldy buildings.

    That's important to know, so that the problem can be addressed if so. No one should be living in a sick building. That's especially the case for anyone with an illness that affects the immune system, regardless of whether we think that mold might be a "cause" of that illness.

    However, passing the VCS should not be taken to provide conclusive evidence that mold toxicity is not a factor in an individual's illness. It is only a first step.

    3. Another kind of test is an allergy test panel. Here we are talking about allergic reactions to toxins, not to their poisonous effects. Still, I have heard of people using them for cases of mold toxicity illness, so I will discuss them.

    One measure is the IgE tests to different species of mold. These measure allergic reactions, which result in symptoms such as watery eyes, runny nose and asthma.

    This is not useful for the purpose of measuring mold toxicity, because this is not an allergy. In my case, even though I appear to be suffering from the negative effects of toxic mold, I do not have any allergic symptoms of mold at all.

    A second component of this test is the IgG. This apparently measures the extent to which people have been recently exposed to various species of mold.

    As it was explained to me, the rationale for the use of this test is to try to determine the extent to which various molds are present in the person's usual environment. If the IgG to Stachybotrys comes up high, it is thought to mean that the person's home (or other area where s/he spends time) has a Stachybotrys problem.

    This does not mean that the person is being affected by the particular mold, though. Some people appear to be able to get a very large amount of exposure to these molds and not suffer from any apparent ill effects at all.

    Having a low IgG does not mean that the person is not being affected either. Again, it is our contention that for some of us, even small amounts of exposure (apparently triggering complement to go ballistic) are enough to keep us sick.

    The potential usefulness of the IgG is to serve as an environmental test, since the tests that remediators use (air tests, ERMI, tape lists) are so unreliable. I don't have enough data on the accuracy of the IgG for this purpose to say whether it actually provides good information.

    4. Another type of test is the one that Gerwyn mentions in this thread (May 5, currently post #99). This is a test that shows whether various molds, including toxic species such as Aspergillus, have colonized the body. In this case, the molds are serving as pathogens (like a bacteria would). Insofar as the molds continue to produce toxins while living in the body, this would be contributing to any toxicity problem present.

    It's my impression that this sort of test is reliable. However, the colonization of individuals' systems with these pathogens is only one part of the problem. We also are affected by the toxins that we take in just by breathing them in. One toxicologist (Dr. Jack Thrasher) told me recently that these toxins appear to have the ability to go straight up the olfactory nerve and into the brain, totally bypassing the lungs or bloodstream.

    Stachybotrys, which is possibly the most problematic toxic mold for CFS sufferers, very rarely can get any sort of a foothold in the body. Aspergillus does so more frequently, especially in people who are already immune compromised. It tends to cause sinus infections and lung problems. These types of problems often are attributed in CFS sufferers to infections with candida, bacteria (such as chlamydia pnemoniae) or mycoplasma. Considering the idea that they might be related to Aspergillosis or other mold colonization, especially if mold in the home is suspected, may be warranted.

    I actually had a lung problem, with mild-ish pneumonia-like coughing, during the couple of months before I found out about the mold in my house. It went away within a couple of weeks after I moved out. One hypothesis is that immune defects resulting from mold toxicity make Aspergillosis more likely to occur. Of course, other immune problems from CFS also could contribute to its presence.

    5. There also is a panel of tests that measure the presence of various chemicals, including various mycotoxins, in the bloodstream. These tests are used frequently by various environmental specialists, such as Dr. William Rea.

    This kind of test was originally designed to assess the presence of manmade chemicals, as might occur from industrial exposures to solvents or pesticides. They then were extended to measure mycotoxins.

    One issue here is that toxic molds make a whole variety of chemicals. We don't have enough knowledge yet to be able to say for sure which ones are particularly bad.

    Another issue is that the body tends to sequester mold toxins and other chemicals in the fat cells rather than in the bloodstream. The amounts in the blood thus may be misleading.

    I don't have enough information about these tests to gauge their accuracy. From what I've heard, people who have environmental exposures to most chemicals tend to see their blood levels gradually go down if they get away from the environmental exposures and engage in active detox. The levels of the mycotoxins seem more likely to stay stubbornly elevated.

    Everything I run into suggests that there's something weird going on with the mold compared to all other substances. I wish I understood better what it is.

    6. The test that Dr. Myhill suggests ("you'll have to go on holiday") and that Erik has long advocated ("the Godforsaken wilderness" sabbatical) discussed above are designed to help individuals determine how much of an impact small amounts of toxic mold are having on them.

    The test needs to be done carefully in order to yield a useful result though. Because CFSers are affected by such small amounts of mold, staying in a bad building, a bad region or amidst bad belongings (or other objects) can make it seem that toxic mold is not a problem even when it actually is.

    If the test is done right though, it provides much more convincing results than any of the lab tests. Only two weeks after moving out of my moldy house and four days after putting aside my belongings from the house, I found that I couldn't go back into close proximity with those items without feeling ill. Washed clothing made my heart beat fast. Putting my hand inside my purse caused a painful burn that lasted for a week. Putting on my heavy coat made me have to stop by the side of the road to repeatedly vomit.

    This is what Dr. Rea calls "unmasking." Interestingly, CFSers talk about it with regard to food allergens all the time---e.g. needing to stop eating wheat in order to figure out that small amounts of it cause a problem. Considering that toxic mold is inherently a "worse" substance for people than is "wheat" (consumed by the majority of the population with only positive results), the idea that the former may be causing problems that are at least as bad as the latter at low levels does not seem that unfathomable of a concept. Just an unfamiliar one.

    In general, practitioners seem to be moving more toward using Dr. Shoemaker's panel of tests (including the VCS) to assess mold illness. For CFSers, the "Godforsaken wilderness" one (perhaps in combination with Dr. Shoemaker's panel) seems to work best. The others seem to be more useful for particular situations rather than for the diagnosis and monitoring of mold illness in general.

    If you have any other questions, please let me know.

    Best, Lisa
  11. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon
    Environmental Tests Related To Toxic Mold

    here is my own perspective on mold testing. However, please note that this is not scientifically proven to be the optimal approach and also is not what professionals in the remediation industry will tell you to do.

    There are several challenges with regard to finding out if a home has a mold problem. This is why most CFSers who are affected by mold don't know it. And insofar as people don't know if mold is an issue for them, it has the potential of undermining any other treatments (including use of antiviral drugs) that they may choose to pursue.

    1. Mold professionals usually recommend air tests. These take photos of the air in the home. Someone then looks at the pictures to see how many of various mold spores are present.

    One problem with this is that Stachybotrys (which is generally considered a particularly dangerous mold and the one that I think is especially relevant to CFSers) almost never shows up on air tests. It releases a heavy, sticky spore that falls to the ground within at most an hour or two. At that point, the majority of the spores immediately disintegrate into "spore fragments" that look like dust. These fragments (which are just as poisonous as the whole spores) are blown around or are carried around the environment.

    In addition, Stachy releases its spores in waves. Some observers have found homes showing no Stachy problems on air tests for 23 hours per day, but horrific problems during the remaining hour.

    Air tests attempt to "control" for the issue of whether a house is moldy by doing a comparison with the outdoor air. Unfortunately, some of us with CFS have found that it doesn't matter if it's the outside air vs. the inside air that's giving us mold exposure. It still makes us sick.

    Air tests are expensive. Professionals usually want to test multiple rooms in the house as well as the outside air. The total can run to $1000 or more.

    2. The ERMI is another test that can be used. It looks at household dust to create an estimation of how likely the home is to have a mold problem compared to other homes. The results are given in quartiles, with the top 25% said to have "the greatest likelihood of having a mold problem."

    I have not used the ERMI or read its enclosed materials, and I'm not certain how Stachy is weighted compared to other molds. The cost is a bit over $300.

    This is a DNA test, and so does take into consideration mold that has fallen from the air and spore fragments. I suspect that it's fine with regard to identifying buildings that are so bad that they are making ordinary people sick.

    However, knowing that a home has "passed" the ERMI doesn't mean that CFSers are not being affected by mold. Being in the top 25% of homes is not generally "good enough" for really reactive people to make a lot of progress. Those of us who have partially or fully recovered from CFS just as a result of attending to mold have needed to be looking at mold in the outside air and on our possessions (and on our own hair) in order to maintain that wellness. These sources of exposure will not be measured in an ERMI test.

    It's my own belief that getting the ERMI test done is useful as a basic evaluative step for CFSers though. Moving to a home that passes the ERMI won't necessarily improve wellness in itself, but it's my suspicion that living in a home that's very moldy will prevent other treatments from working as well as they could. This hypothesis wouldn't be very hard to test, so hopefully this can be done in conjunction with other CFS treatment studies soon.

    3. Another type of test (e.g. "tape lifts") looks at a particular obvious mold and gets an identification of it. This type of test is readily available. However, regardless of what comes up on the test, it shouldn't be considered to be useful in providing information on whether an environment is problematic. Stachy grows almost wholly within walls, and most moldy homes have more than one type of mold growing. If Stachy actually can be seen (in many cases, it looks more like smears of dirt than mold), that's a suggestion that the problem is really horrific.

    There's a company called MouldWorks that does a very nice job of giving a description of what samples of mold include. Regardless of what they say, their analysis shouldn't be thought to be very helpful in CFSers' decision making.

    4. Those CFSers who have realized that mold is a problem for them have mostly done so as a result of leaving their home for a while and then returning. Dr. Sarah Myhill actually recommends this, suggesting that "you'll have to go on holiday" in order to find out whether mold is an issue for you since "mould allergy" does not show up on conventional allergy testing. (That's because it's a toxicity problem rather than an allergy problem, of course.)

    This is an excellent suggestion, but it only works if the "holiday" actually reduces toxic mold exposure. If people bring their contaminated clothing and other belongings with them, they may not get to a low enough level to make much difference. If they stay in a moldy building (most hotels are quite moldy) or happen upon a place with a lot of outdoor mold, this also will negate the experiment. I've heard that Dr. Myhill recommends that people in England try going to another country, like Greece, for the experiment.

    In addition, this does not work like a mold allergy. Getting away from the mold for a short period of time does not necessarily create much improved wellness. If people are poisoned by pesticides, getting away from new pesticide exposures wouldn't be expected to provide immediate relief. This is the same principle. It takes time for the system to detoxify previous exposures and to repair itself from downstream problems. And since mold is just one part of the equation, other treatments (such as antivirals) may be needed. This is just a stepping stone.

    If a person who's getting a lot of mold exposures does go to a clear environment, they do usually feel a bit different. They may be more able to "exercise," whatever that means. They may have less agitated exhaustion, more falling into a deep heavy sleep that promotes detox.

    Most importantly, they may find that they feel particularly bad when they return to their usual environment. In some cases, the downturn is so dramatic that they have a difficult time remaining in their homes.

    Erik has written a lot more extensive information on this kind of "mold test," which I can supply to people if they want it. Please write and ask.

    CFSers who try to do their own remediation often get much more ill as a result of the process. In many cases, they do not recover to their previous baseline. Some patients have died or become bedridden as a result of doing this.

    PLEASE BE SAFE!!!

    Best, Lisa
  12. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon
    Initial Screening Tests

    >I'm a mom trying to do some self help for my 28-year-old son. Hes been sick for eight years. Were not ready to jump into full-on avoidance right now, but Id like to know how big of a problem it might be for him. The cost of Dr. Shoemakers panel is way more than we can afford -- more than $1000! Do you have any suggestions about how else we might start looking into this?


    This is a really good question. I think that the unmasking test suggested by Dr. Sarah Myhill (Im afraid youll have to go on holiday) and long advocated by Erik (the Godforsaken wilderness sabbatical) are the best, but that takes a lot of effort and money with a not-certain result. If people go to a bad place, they wont experience any improvements. And if they go to a really good place, they may find that they cant return to their existing dwelling when they return.

    Dr. Shoemakers panel is far too expensive for most CFSers without test insurance to do. In addition, its more designed to help people figure out if they have a mold problem at all, rather than one thats particularly bad.

    My belief is that while extreme mold avoidance likely is inappropriate for the majority of CFS sufferers, making sure that theyre not living in conditions that are WAY over tolerance level is a smart thing to do. If mold exposures are really high, it seems reasonable to think that they will not benefit as much from other treatments and possibly will continue to decline over time.

    So I put some thought into how I would recommend that a friend or relative approach the situation. I think that perhaps it would be best to use a variety of kinds of tests, which approach the problem from different ways.

    This is just my first try at putting together some thoughts though. Comments are welcome.


    1. Toxic Mold Screening Questionnaire

    It seems to me that the most important question for CFSers to be considering is whether toxic mold is a really serious problem in the place where they're living. I thus put together a questionnaire that looks at various situational factors.

    Very few people will respond positively to all these questions. But the more Yes answers that are given, the more likely it may be that a serious problem does exist.

    This questionnaire also can be used to think back on whether previous residences might have been problematic with regard to toxic mold. However, insofar as the main goal is to take appropriate action now, focusing on the current dwelling seems especially important.


    2. VCS test.

    This is an eye exam that screens for the presence of neurotoxins in the brain, developed by Dr. Ritchie Shoemaker. It can be taken online and costs $15.

    www.biotoxins.info

    Unfortunately, people who have toxic mold problems often pass this test. Also, a variety of neurotoxins (including mercury and Lyme) can give a positive result on the test. Therefore, its hard to make a conclusion about whether mold is a particular problem regardless of the result.

    When I was first considering whether mold might be a problem for me, my vision was so dim that I could barely see. The results on the test were convincing to me. I suspect that this test is pretty good at identifying people who are living in catastrophically moldy environments, but some may still slip through the cracks.

    I thus suggest using this as part of an overall evaluation rather than a Yes/No answer in itself.


    3. Dr. Shoemakers Lab Tests

    The most important test that Dr. Shoemaker has previously suggested to determine current exposures is the C4a. He states that this is particularly useful for mold exposures (as opposed to most other biotoxins).

    Occasionally, people with mold illness do come up with a normal C4a on tests even though theyre living in bad environments. Again, thats a reason to look at a group of measures. Based on what Ive seen, people who are living in environments that are way above their tolerance levels tend to have very high C4a levels, so it seems to me a good clue.

    Another test that Dr. Shoemaker now uses to test current exposures is the TGF B1 test. I dont have enough information about its accuracy to suggest it though.


    4. The Exercise Test

    Its my belief that CFSers will have a hard time doing any exercise at all while living in a bad environment. In many cases, walking from the bedroom to the bathroom is more exercise than an individual can handle.

    Insofar as people can exercise (whatever that means for them) more outside their homes than inside it, that suggests to me that the home is a big problem.

    Thus, gauging whether exercise seems more doable outside the home may be useful. Nobody should push it though! The idea here is to see what the body is easily able to do, not to force it and then end up back in PEM.

    Spending most of a day outside or perhaps overnight in another location will be the best way to do this test, since the body may take time to rest. Trying different locations for comparison purposes may be useful too.

    Because many CFSers are affected by the small amounts of mold toxins on their hair or clothing, showering elsewhere and then putting on new clothes that havent been exposed to the suspect dwelling might be a useful addition to the experiment.


    5. The Weather & Activity Journal

    CFSers often keep journals of how they are responding to factors such as medications or supplements. Less often do they do so in order to keep track of whats going on in their environment.

    This experiment will keep track of a number of factors related to mold exposures including:

    * Barometric pressure drops

    These cause mold colonies to release their spores in the hope of having them spring into live mold as a result of rain. A device to keep track of barometric pressure can be purchased at Wal-Mart, or just look to cloud cover.

    A web site that provides barometric pressure readings is here:

    http://www.wunderground.com/weathers...p?ID=KNVINCLI5


    * Wind direction.

    Sometimes wind direction and speed will matter. This especially is the case if the wind is blowing from a place that is suspected of being bad.


    * Time spent away from the home.

    Keep track of various places visited. Be sure to write down EVERYWHERE visited, since even a short time in a really bad place can cause some people a downturn that can go on for days or weeks.

    Sometimes people do not feel bad until several hours after an exposure. Thus, if a downturn occurs, think back to what happened over the past day or so to see if anything suspicious can be identified.

    Outdoor places as well as inside buildings should be considered.


    6. ERMI Test

    This is a DNA test of mold in the home. Insofar as a home is really bad, the test might pick up on it. The test costs $340.

    Previously on this thread, I talked about Dr. Mary Beth Short-Ray and environmental mold testing. Here is the site with the test for sale:

    http://www.toxic-black-mold-syndrome...HELPSTORE.html

    I dont suggest any of the other tests on this site except the ERMI.


    7. Am I A Moldie?

    The response that I usually get when I list various symptoms that are associated with mold reactivity is, But those are just general CFS symptoms.

    Insofar as mold reactivity is an inherent part of CFS, this makes sense. But that doesnt help people who dont know yet if they believe its an issue for most CFSers.

    I thus am including not only symptom descriptions, but a list of situational factors, in one of the posts below.


    Best, Lisa
  13. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon
    Does My Current Environment Have a Toxic Mold Problem?

    This screening questionnaire is not designed to give CFSers a definitive answer about whether toxic mold in general is a problem for them.

    It is only designed to look at whether it seems possible that it's a particular problem in their current residence.

    Best, Lisa

    *

    YOUR CURRENT HOUSE

    * You are aware of a water event having happened at some point in your home. This could have been even a small amount of flooding (e.g. from a broken air conditioner or toilet overflowing) 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.

    * Your house has 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 or walls and haven't taken steps to make sure that mold is not a problem in those places.

    * Your home has a flat roof.

    * When it rains hard, water outside (e.g. on a sidewalk) runs/ran in the direction of your house.

    * You live in a neighborhood where homes are known to flood easily.

    * You have a sump pump that occasionally or frequently allows some flooding.

    * Your house is very well insulated or sealed, allowing little air circulation from outside.

    * Your house uses an HVAC (ductwork) system rather than radiators.

    * You have older windows in your house and haven’t checked to see if they need to be replaced.

    * You have walls made of drywall, fiberboard or other cellulose-based products in your home. (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.

    * You have noted design or construction problems in your home that you wish 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, but believe you've gotten rid of it all.

    * You’ve uncovered mold during renovations of your home, but believe that you’ve gotten it all.

    * You or others have noted the smell of mold in your home.

    * You live in a house that is more than one year old.

    * You suspect that your landlord or your home’s previous owners did not take really good care of it.

    * You get a lot of mildew on your shower curtain, window panes, and plants.

    * Onions in your home get moldy before they dry up.

    * Your clothes start to smell midewed if you leave them in the washer for more than a short while.


    YOUR NEIGHBORHOOD

    * You live in a city.

    * It feels like your city doesn’t get good air circulation (e.g. has a “haze” that hangs over it).

    * You live in a valley (even if it’s just 100 feet below the surrounding area).

    * You live near a lake that’s host to a lot of algae.

    * You live in a hot, humid climate where air conditioning is used a lot.

    * You live in a wooded area where fire retardants often are used.

    * You live in a place with strong CFS support groups, a historical CFS epidemic, and/or thriving Fatigue & Fibro Centers (FFCs).

    * You’ve met at least a few really sick CFS patients from your local area online or in person.

    * You’ve been able to find local doctors who seem well-versed in CFS and have other patients like you.

    * You live in California (especially the SF Bay Area), Texas (especially Dallas/Ft. Worth or Houston), Boston, Louisiana or England.


    HOUSEHOLD MEMBERS AND NEIGHBORS

    * Someone else previously or currently living with you has unexplained health problems (e.g. CFS, fibro, ADHD, MS, autism, Asperger’s, unusual tumors, "liver problems," miscarriages, infertility, SIDS, heart problems, thyroid problems, depression, "just plain tired”)

    * Someone else previously or currently living with you has mood issues (anger/rage, depression, bipolar depression, suicidal feelings, lethargy, underachievement, withdrawal, anxiety).

    * You have one or more pets that seem unhealthy for their age (e.g. lethargic, howling, stiff, cancer, “acting up”).

    * You are aware of other people in your building or neighborhood who are sick with any sort of odd or unexpected illnesses.


    REACTIONS TO YOUR HOME

    * 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 feel like certain other people’s homes feel more comfortable than yours, but you’re not sure why.

    * Blow drying your hair makes you feel really exhausted.

    * After a shower, you find that you need to lie down and/or that your heart is beating fast.

    * You feel worse when you or someone else vacuums the house.

    * You feel worse when running the clothes dryer or folding laundry.

    * Cleaning closets or straightening up piles of belongings can make you feel a lot worse.

    * You feel better in some parts of your home than others.

    * When you spend time outside, you often feel better in other places than you do in your own backyard.


    HISTORY

    * You live in the same home that you got sick in.

    * You’ve gotten worse while living in your current home.

    * You were spending most of your time in your current home (rather than working outside the home) when you got sick.

    * You still have a lot of your clothes, furniture, books/papers and other belongings from the house you got sick in.

    * When you’re at work (or when you were working), you felt as good or better than you do when at home.

    * People at the place where you were working when you got sick seemed generally pretty healthy and in good spirits.


    SYMPTOMS

    * You have a lot of static shocks.

    * You have heart pain/palpitations, horrific headaches, very deep skin dents, suicidal feelings, sensations of skin burning, a tender spot (like a marble) at your sternum, feeling of your brain and spinal cord swelling, trembling even when it’s not very cold,

    * You feel more poisoned (or like a fly caught in a web) than fatigued.

    * You often feel a bit better if you can drag yourself out of bed, even if you don’t leave the house.

    * You find it necessary to drink a lot of water when at home, but not always so much when you’re away from home for a while.

    * You react very poorly to supplements or drugs that are designed to address pathogens (e.g. antivirals, antibiotics, antifungals) or toxins.

    * You have candida problems that are out of control

    * You have a doctor who seems to help other patients, but his/her treatments do not seem to be working very well for you.

    * You have a feeling of pain in your lungs or an ongoing cough.

    * Sometimes you wake up and are covered with clammy sweat.

    * You have chemical sensitivities that are getting worse.

    * You have a hard time reading unless it’s in bright sunlight. Everything looks a little dim.

    * You feel much worse prior to or during storms (when the barometer is dropping).

    * Sunny days make you feel considerably better.

    * Your health takes a big downturn when fall comes.

    * Getting ready to go out or getting packed for a trip is really hard.

    *You have a hard time drawing a deep breath.


    GETTING OUT OF THE HOUSE

    * You feel _different_ (though not necessarily better) when away from the house for several days or more. Or you alternate while you're away between feeling pretty good and being dead tired.

    * 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 often feel better for a while once you do go out .

    * Swimming or spending time in outdoor pools (but not indoor pools) has appeal for you.

    * You have certain friends or relatives that you like to visit because you just feel good there.

    * Sometimes when you spend a night or two away from the house, you find you “sleep like the dead” in a way you usually don’t at home.

    * Sometimes when you go out, you feel fine until you get back home. Then you just collapse.

    * You often 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)

    * You’ve had one or more experiences where you’ve gone on a trip and “come back to life.”

    * Sometimes you look forward to going out but then feel awful. Other times you don’t feel like going out, but feel pretty good.
  14. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon
    Am I A Moldie?

    Below are some situational "clues" and symptoms that seem to be associated with toxic mold illness.

    They are compiled from observations from a few different doctors specializing in mold illness, as well as my and other CFSers' personal experiences.

    This is a long list, but I had just about all of the symptoms on both lists prior to mold avoidance.

    Now they're all gone.

    Best, Lisa


    *

    PREFERENCES:

    * You often feel worse when you stay in big hotels with centralized duct systems.

    * You often feel worse in big indoor shopping malls.

    * You’ve felt really bad in schools or government buildings

    * Stores like Home Depot and Wal-Mart bother you.

    * Starbucks and Panera feel good to you.

    * You sometimes avoid going to certain places or driving certain routes, because doing so makes you feel worse.

    * Air travel takes a real toll on you.

    * You feel especially drawn to the mountains, seashore or desert.

    * Vacations in less “civilized” areas sometimes feel really good to you.

    * There are certain places that you got that feel really good to you, but you’re not sure why or attribute it to “good chi”/“feng shui.”

    * You’ve had experiences on vacation or travel when you’ve felt absolutely awful.

    * You’ve felt particularly bad on vacations to Dallas/Ft. Worth, Houston, New Orleans, England, Boston or the San Francisco Bay Area.

    * You’ve felt better on a vacation to Greece, the Caribbean or other places with similar climates.

    * If you were feeling up to doing a little exercise, you’d much rather do it outside than inside.

    * Usually when you go to the doctor, you feel worse during and after the visit.


    SYMPTOMS

    * Sometimes when you go shopping or other places, you feel short-tempered or lose your temper with people for no particular reason.

    * Sometimes your moods seem out of control. You can get angry with people or severely depressed, even though there doesn’t seem to be any particular reason why.

    * Sometimes when you go out, you unexpectedly feel so faint that you need to sit down or lie down.

    * Sometimes when you go out, you have a sensation that “I’ve got to get out of here” for no reason.

    * Sometimes for “no reason” you can do more “exercise” (whatever that means to you) than at other times.

    *


    HEALTH SYMPTOM LIST

    BRAIN:
    Headaches
    Poor memory
    Trouble concentrating
    Trouble learnings
    Trouble finding words
    Trouble handling numbers in head
    Confusion
    Vertigo
    Disorientation
    Seizures
    Trouble speaking fast
    Trouble understanding fast verbal information
    Trembling
    Vocal or motor tics
    Abnormal reflexes
    Strokes
    Edema or swelling in brain

    EMOTIONAL:
    Mood swings
    Mania
    Irritability
    Impulsivity
    Increased risk taking
    Decreased speech smoothness
    Poor stress coping
    Increased verbal fighting
    New lateness
    Poor empathy
    Poor boundary awareness
    Immaturity
    Spaciness
    Rigidity
    Poor insight
    Decreased productivity
    Unable to process trauma or interpersonal pain
    Increased narcissism
    Forgetfulness
    Poorly organized or obsessively organized
    Dead creativity
    Depression
    Anxiety
    Panic attacks
    Decreased attention

    EYES:
    Light sensitivity
    Red eyes
    Blurred vision
    Tearing
    Eye pain
    Burning eyes
    Low visual contrast

    HEARING:
    Sound sensitivity
    Decreased hearing

    MOUTH:
    Metallic taste
    Saliva with blood streaks

    NOSE AND SINUSES:
    Chronic infections
    Sniffing
    Tingling nose
    Nasal itching
    Stuffy nose
    Runny nose
    Blood streak in saliva or nasal mucous

    THROAT AND LUNGS:
    Cough
    Erosion of membranes
    Shortness of Breath
    Sore throats
    Cold or Flu symptoms
    Chest pain
    Wheezing
    Voice changes

    STOMACH AND INTESTINES:
    Ulcers
    Indigestion
    Nausea
    Vomiting
    Sloughing and death of intestinal villi
    New Reaction to wheat or dairy
    Diarrhea
    Constipation
    Belly pain
    Bile duct disease

    LIVER:
    Fatty liver
    Liver cancer
    Abnormal liver lab tests
    Jaundice or yellowing

    SKIN & HAIR
    Numbness
    Tingling
    Hair loss
    Diverse and severe rashes
    Itching
    Blisters
    Burning skin sensation

    MUSCLES AND JOINTS
    Cramps
    Stiffness
    Joint pain
    Cartilage damage
    Muscle Aches
    Delayed Recovery
    Sharp Stabbing Pains
    Lightning Bolt Pains
    Morning Stiffness

    HEART AND BLOOD VESSELS
    Heart Muscle damage
    Heart muscle inflammation
    Chest pain
    Red or pale skin

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

    HORMONES & HORMONE TISSUE
    Low DHEA
    Low MSH
    Low Free Testosterone
    Low Androstenedione
    Low Cortisol
    Abnormal cortisol regulation
    Damage to Adrenal glands (Makes Cortisol, DHEA and ADH)

    OVERALL BODY:
    Fatigue
    Weakness
    Malaise
    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)
    Sweats
    Temperature variation
    Appetite swings
    Easy bleeding or bruising
    Swelling
    Trouble walking or running easily
    Reduced coordination
    Rapid pulse
    Low temperature
    Jerky movements
    Abnormal Blood Pressure (low or high)
    Fever
    Chills
    Post Exertional Exhaustion
    Increased tumors

    PREGNANCY
    Fetal abnormalities (birth defects)
    Infertility
    Miscarriages
  15. lono

    lono

    Messages:
    47
    Likes:
    2
    This area can get very complicated and unfortunately there is only one article I know of in a peer-reviewed medical journal that shows a correlation between CFS and exposure to a water-damaged buildings. The current hypothesis is that not everyone with CFS got sick this way, but for a subset of CFSers exposure to water-damaged buildings is either the reason they are sick or a major contributing factor.

    Lisa mentioned a number of the tests that can be done. My opinion is that the tests you should run are: C4a, TGF-Beta 1, melanocyte stimulating hormone (msh) and vasoactive intestinal peptide (VIP). From the feedback I've heard, if you have elevated C4a and TGF-Beta 1, as well as low VIP and MSH, you will be quite ill. If can correct these abnormalities, then I bet you'll feel a whole lot better. Note that one of the biggest problems is that VIP and MSH have not been approved as a prescribable medication by the FDA in the United States. Therefore most mechanisms to try and raise MSH and VIP are indirect.
  16. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,456
    Likes:
    1,968
    London
    What about no toxic mould and XMRV+

    Sorry, I don't understand the poll. Probably just me being stupid.
  17. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon

    Unfortunately, many people are exposed to toxic mold and don't know about it.

    I thus think it's a good idea that "No Toxic Mold" is not a choice. Otherwise the results might be really misleading.

    Best, Lisa
  18. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon
    If I were going to pick four tests from Shoemaker's panel to run, those would be the ones.

    I'm not sure why Dr. Shoemaker can't get MSH. Dr. Guyer says that he's used it on occasion. It's expensive though, and he said that he didn't have any patients find it useful enough to continue with.

    I'm still waiting to hear from a CFS patient who's benefited from VIP, but I'm keeping my fingers crossed.

    Best, Lisa
  19. slayadragon

    slayadragon Senior Member

    Messages:
    1,091
    Likes:
    378
    twitpic.com/photos/SlayaDragon
    Shoemaker Protocol


    I know that this is what Dr. Shoemaker says about CSM, but this is not the experience that I've heard from any people with "classic CFS" (Canadian Criteria). I think it more applies to people with just mold illness or maybe Fukuda CFS (which could be the same thing).

    The "classic" CFS patients that I've seen take CSM all get severe constipation from it even when they are conducting "moderately extreme avoidance" (moved out of bad residence, gotten rid of all contaminated belongings, living in a place in at least the top 10% of all buildings, staying out of moldy buildings and decontaminating after big unexpected slams).

    Insofar as aggressive measures are taken to relieve that constipation (e.g. high-dose magnesium or Vitamin C), they tend to get extremely sick. Sometimes deathly so.

    This happens even when they take tiny doses of it (e.g. 1/4 teaspoon twice a day). Other detoxifiers (e.g. chelation, Rich van K's supplements, brown seaweed, ALA) seem to be tolerated equally poorly.

    After I went REALLY extreme in my mold avoidance efforts (moving to a tent in the Godforsaken desert was just a start), I began to be able to take doses of CSM that were closer to the normal ones (a total of a packet or two a day at first). This resulted in severe hangover symptoms and a huge amount of trigger point/lymph node pain, but this was nothing like the "bad sick" that I was getting when I was taking it in "civilization."

    I pushed detox with CSM for over a year. Poison continued to POUR out of my body, almost literally, that whole time. It was absolutely horrifying how much of it there was stored up inside and how toxic it was as it came out.

    Finally, CSM stopped giving me those intense reactions. Now I've started on mercury (with ALA, brown seaweed, etc.), and that detox has been just as bad.

    I don't know why it is that my body has so much toxin in it and has such a hard time getting it out. This defect seems to me to be at the core of CFS. If we could get to the point where we detox like normal people, our problems might be solved.

    Certainly, Lyme is a problem for me. I suspect that it's a problem for the vast majority of CFS patients, if not for all of us.

    But I don't think the solution would have been to take Actos for a whole year, which is how long the poison kept pouring out. This was not intensification reaction anyway, because the symptoms were not "CFS" ones. Just insane amounts of toxicity.

    Despite his long-time friendship with Erik, I'm not sure that Dr. Shoemaker ever has fully keyed in on just HOW extreme CFSers need to be in order to get their systems damped down to the point where they can start detoxing.

    And if CFSers really need to reduce their toxic loads substantially in order to decrease their reactivity, this would explain why it is that Dr. Shoemaker's techniques do not (as he admits in "Mold Warriors") help CFSers.

    For us, 2-4 weeks is a drop in the bucket!

    Best, Lisa
  20. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    640
    Likes:
    1,081
    Mercer Island Wa
    Understanding Poll

    of CFS
    Just as there is an onslaught patients developing ME/CFS after a viral infection such as the flu, EBV or mono, I was trying to establish if anyone who had exposure or were sensitive to molds or fungi including candidiasis, later developed CFS. Since there are threads on here discussing this issue, I was trying to establish the extent of people who experience these symptoms and later developed CFS. It was hard to measure the extent of patients with these issues and CFS from just reading the threads. The Northwest is considered a hot zone for MS so there may be a correlation or an association with CFS as well in other parts of the world. Since the recent German study indicated that xmrv might take advantage of people with immune suppressed systems.

See more popular forum discussions.

Share This Page