BLACK MOLD - anyone know about it?

[antares4141]

Lisa,
Your making claims I simply don't believe.
I need to emphasize I certainty don't KNOW this about you or others, or possibly even myself.
Maybe it's true for you but not me? My 15 years experience just doesn't bear out what your saying
.
I know how easy it is to fool ourselves, I would have told you 14 months ago that I am not allergic to any food now I'm turned 180 degrees.

I am not deliberately trying to be antagonistic. (I think anyways)
I'm skeptical and if there is ever any quality evidence counter to my opinion or I can bear it out with a reproducible experiment I will change my position. Not that I haven't tried, when I first came out here I was forced to almost at gunpoint, when I was renting space on a fellow moldie's property. If I knew it would have ended up that way I would have never done it but that's another topic.

I don't really believe in the mycotoxin connection to mold related illness. Yes I know they are very toxic but their being produced by "micro" organisms in "minute" quantities. Again if I am not clear about this I don't "KNOW" this.

My opinion based on the evidence I reviewed is that mycotoxins are not responsible for mold related illness (this evidence I'm relying on came from the same people who say mold doesn't make us sick either so I do take it with a grain of salt). Besides the lack of evidence it's just tooooo simple of an answer for me and I think it's much much more complicated than this.

I've often claimed that people with mcs are actually reacting to mold but I need to emphasize I don't KNOW this.
Again it's an opinion or position I will change based on good evidence. As a matter of fact my position has changed, I now believe it's mold and food sensitivities but chemicals (in minute quantities) if at all play a minor role in day to day re-activity. Now if your to get stuck in an elevator with someone that put half a bottle of coloegn on that's different but than that might make a healthy/normal person sick also. Or if you were inside a building made out of fresh press board and it's out-gassing really badly again that might make a normal person sick. It get's so complicated cause there are a thousand shades of gray here.

I guess what I am trying to do here is maintain my position but give you respect where it's due, I don't "KNOW" what your saying isn't true about you or others possibly even me and if I wasn't clear about this I apologize for that.


Best
Robert

 

[slayadragon]

Hi Robert,

Whether the phenomenon of reactivity to small amounts of mold toxins is universal to all CFS patients, I can't say for sure. That's something that we need research to find out.

Certainly I can't say whether your possessions are having an impact on you. If you want to find out, then there are experiments that you can do. If you don't want to do the experiments, that's fine with me. I'm not trying to convince anybody to do anything.

However, there are enough people within the ME/CFS community who have reported being reactive to very small amounts of these toxins, and who have demonstrated substantial improvements as a result of avoidance of those small amounts of toxins, that I think it's becoming increasingly hard for people to reasonably take the position of "I don't believe in that."

From a logical point of view, ME/CFS patients are hyperreactive to all kinds of things. Why should mold toxin be any different?

Of course, no one can force anyone to believe anything. People come around to changing their beliefs at their own pace, and some do so more slowly than others.

Some people still think the world is flat. I can't do anything about that either. All I can do is report the information as best I can, and let people judge for themselves.

Best, Lisa

 

[antares4141]

Correct me if I'm wrong Lisa but in order for this to work I have to abandon all my belongins. Car, house, cloths, dishes, furniture, computer, pictrures, books, office supplies, etc.

Than I have to replace these items from somewhere. If there used I have to wonder if they haven't already been contaminated if they are new I have to worry about the same thing. All these products have to have been handled by people many who live in moldy houses many of those shanty towns and slums. They sit in containers get shipped half way around the world. Than they sit in stores that have thousands of people visiting them every day many again who live in moldy dwellings. But these stores have AC's which not only circulate everything they cultivate it in the drip pans, evaporator coils and ducts.

Even if I was able to obtain products that are less contaminated than mine and I drove out into the middle of the dessert and set up a camp and slept underneath the stars I would still be breathing mold, it's in the air it's ubiqudous as a matter of fact the standard by which air quality experts test houses isn't by some certain exceptable level but by weather or not the house test's higher than the outdoors.

That's the target I've set my sights on, what can be found outdoors. That's why I drove 400 miles nrth of here up in the mountains cause where it snows these levels drop dramatically. That's extreme but at least rational.

It simply doesn't seem rational to take avoidance to the extremes that you and Erik Johnson talk about. But maybe I'm wrong. Either way I can't join the club cause it's just too prohibitly expensive for me to even try it. The risk (expending my life savings) vs benifit (very likely not being any better off than where I started) just don't seem to be worth it. I'm sure walmart and home depot would be thrilled about it though.

Robert

 

[slayadragon]

Hi Robert,

As I say, I'm not suggesting that you do anything at all. Everyone has the right to do as they choose, with regard to avoidance. I'm just providing information in the event that anyone is interested.

Not all mold is created alike. Most species do not make any toxins at all. Of those that do make toxins, some of the toxins are much worse than others, in terms of what has been found in medical testing. In addition, for those people who are hyperreactive to toxic mold, it may be that their reactivities are particularly strong to certain ones.

I do not suggest to anyone that they get rid of all their possessions, until they are convinced as a result of their own experiences that those possessions are having a negative effect on their health. What I suggest is that they take a "sabbatical" in a good place, without any suspect possessions, in order to get clear.

If they do this for a few weeks, then their sensitivity will go up and they will be better able to determine whether and how much items and buildings of all sorts are bothering them. If it turns out that they are not bothered by their possessions or by their house or by the outdoor air where they are currently living, that's great. But insofar as their health indeed is affected, it can be helpful to know about it.

It is true that some possessions can be contaminated right from the store shelf. Very rarely are such items as bad as something that has been stored in a bad home for an extended period of time, however. Certain retailers are better than others, in terms of having reliably clean products in terms of mold contamination. (I like LL Bean a lot, for instance.) Those who are concerned about whether the possessions that they are buying for the experiment can have a mold-reactive person who already is unmasked check them out.

I don't suggest that people buy huge amounts of stuff for the experiment. The goal is to just survive for two weeks, with enough stuff to get by. Maybe when people go back to their old stuff, they will be able to tolerate it. If not, they can decide what else to buy then.

This all is precisely the same thing that people do when looking to see if they have (for instance) gluten sensitivity. First they start be eliminating all traces of gluten from their diet for two weeks, being particularly scrupulous (e.g. looking at the ingredients on their toothpaste). Then they try eating some gluten, to see if it bothers them. If so, then they may consider eliminating gluten permanently, and experimenting with how careful they need to be (e.g. whether they feel safe eating in restaurants).

Mold avoidance is a little trickier than gluten avoidance, because we're dealing with something in the outside environment rather than that we put in our bodies. But it's exactly the same principle.

Best, Lisa

 

[antares4141]

I've actually done lot's of sabbaticals, stayed in my dad's home in fl, (15 years old decent shape) always felt fairly decent there. Also found a brand new home on craig's list willing to rent out a room to me. Stayed there 7 months but did take a minimal amount of things with me, laptop, clothing, stuff like that. Didn't help much maybe a little it was really hard to tell. Usually whenever I go somewhere I will feel better for a little bit and than it's back to the same old grind. For instance if I visit a place for a week or two I might feel good the whole time but if I were to move in that same place I would start going downhill. Case and point my dad's place in NC. 70 year old home lot's of mold in the basement. I would go there for a week or so and feel fairly decent but when I moved up there I lasted about 3 weeks inside the house and went down into the darkest depths of hell after that and had to set up a tent and recuperate with about three days of almost solid sleep. I don't think I ever totally recovered from that. Nothing was the same there after that. That's where I originally built the truck camper and I stayed outside in it for a few months and fixed up a shower area and cooking area also so I could stay out of the house. I left that place with my tail between my legs after about 9 months.

Basically where I am going with this is if I'm in a moldy house with problems that are either obvious or can be ferreted out by a professional it is paramount I get out of it as soon as possible. A new house with no mold problems is about the same as the metal building I'm staying in right now as long as the windows are open. All bet's are off with the ac on.

There is the gluten and food re-activity variable also. Most these test's were done before I recognized this was a problem for me. Anyway just for S's & giggles maybe I'll try to set up a test similar to what your talking about in the dessert somewhere. Just going to be difficult cause it means buying all new cloths, buying a tent, etc. Also I will have to be able to cook and shower and stuff which means buying equipment for that also. I don't think renting a car will work so maybe I'll just hike a mile or two away from my house. Never really know until your try!
Robert

 

[slayadragon]

It's often really hard for people to figure out how reactive they are, by looking back at their own histories. It's too easy to get thrown off.

One thing that often happens is that people will go somewhere on a vacation, bringing a minimal amount of their stuff from home. They'll feel good and conclude, "This is where I want to live!" Then they will move there with all their contaminated stuff, and will feel not much better than they did at home. Then they conclude that the reason that they felt better on vacation was because of "lack of stress," and that their illness thus is caused by "stress."

Another thing that happened to me is that I would frequently go on trips away from my home and feel a lot better. Then I would go back to the (moldy) house and feel worse. Since I didn't have any understanding that my house could be making me feel sick, I generally blamed my relapse upon returning home on "post-exertional malaise," as a result of having overextended myself on the trip.

Definitely the "mold sabbatical" concept is tricky to pull off. You have to either a) be willing and able to go camping or b) have a building/home lined up that's known to be especially good. Both of those take some effort and money. So unfortunately, like most treatments for CFS discussed on this board, mold avoidance is not one that's going to be accessible to everyone.

A number of people have managed to pull off the sabbatical in the recommended way though. Of those who have done so, all of them have concluded that mold avoidance is worth pursuing for them. (Of course, in your case, Robert, you already know that avoidance is worth it. The question is just how reactive you are, to small amounts of cross-contamination.)

Just last week, a new person did the sabbatical experiment. She is from NM (which ranges from moderately problematic to really good in terms of outdoor toxins), but recently spent a lot of time living in some likely moldy buildings in some places that a number of successful mold avoiders have found to be problematic (including Berkeley, CA and a town near Portland, OR).

She decided to do a two week camping trip, and at first was going to try Anza-Borrega State Park (near San Diego). When I visited that area though, I didn't feel like the air quality was very good in terms of mold/biotoxins (it's pretty polluted there too). So she went to Death Valley, where many mold avoiders have done well. For her trip, she bought inexpensive clothes from online sources and borrowed a lot of camping equipment and a car from a healthy friend in NM. She purchased a keyboard for her cell phone and used that to access email.

For the two weeks she was in the desert, she felt good. Not 100% well though. And because she had occasionally had good spells in the past, she still wasn't sure what to think.

Then she went to visit Erik in Lake Tahoe. They visited a few bad buildings and went to a place with problematic outdoor air, and she got sick in the same way that she had when she was living in Berkeley and Oregon. So now she's pretty convinced that toxic reactions are a factor in her illness, and that they're worth avoiding. Her next step is to go back home to see how she responds to her home in NM and to her possessions. If she feels that she is being made ill by them, then she plans to take action not to be around them any more.

Obviously, this kind of experiment is really a challenge to pull off, especially for people who are really sick. It does provide interesting information though, for those people who have managed to do it.

Robert, if you really decide to go on a camping trip of the kind you describe, feel free to let me know. Maybe I can give you some suggestions on the easiest ways to make it work.

Best, Lisa

 

[antares4141]

So unfortunately, like most treatments for CFS discussed on this board, mold avoidance is not one that's going to be accessible to everyone.

I especially feel terrible for people living in situations like this
http://i185.photobucket.com/albums/x74/antares41_41/floor.jpg
That was underneath my tile floor out of sight and easy to be in denial about. It really is criminal that public health officials are still denying the connection to CFS and mold.

Obviously, this kind of experiment is really a challenge to pull off, especially for people who are really sick.

Yes, not only do you have the finacial burden to bear but your so sick you can't get out of bed, sucks, been there and done it fortunally I had the resources to get out and was able to dump my house for a little over half of what it's market value should have been and yes I did disclose the problem to the buyer who snubbed his nose and put everything back together only removing the worst areas.


I've got two things I want to try, I have always wanted to camp on an island with a minimal amount of brush which is kind of hard cause most you will be told to get off after a few days, two I want to make it up north where there is plenty of snow stay a month or so and see if it helps.



Robert

 

[slayadragon]

I've got two things I want to try, I have always wanted to camp on an island with a minimal amount of brush which is kind of hard cause most you will be told to get off after a few days, two I want to make it up north where there is plenty of snow stay a month or so and see if it helps.

I had very good experiences during the summer in Montana and would feel pretty confident going back there during the winter (if I didn't mind the cold!). On the other hand, many places with a lot of snow seem not to be good for people with CFS and/or mold illness. Most of Canada seems to be dreadful, for instance.

My belief here is that the reason that Montana is a good place is because they are environmentally conscious and careful there. It's a part of their culture and of their tourism industry.

In general, no matter what the location, I always feel great in places that are pristine. Environments that have been subject to the use of outdoor chemicals, on the other hand, tend to be problematic. It doesn't seem to be the chemicals themselves that are problematic though. Rather, I think that either that a) chemicals kill off normal microorganisms in the environment, letting odd ones (including ones that make toxins that we are not evolved to tolerate) to thrive or b) certain microorganisms have mutated to the point that they are able to use manmade chemicals to create more potent biological toxins. It would be good to see some research on that.

In any case, in terms of your experiments, I would suggest that you consider not just climate but also environmental chemical usage. Please report back with regard to your findings!

Best, Lisa

 

[antares4141]

You have to take into consideration that most Canadians live in conventionally constructed homes many of them with either existing water intrusion problems or ones that have been repaired but not satisfactorily re-mediated. I would be very interested to see if those up there with this illness poured a cement pad in their back yards and erected a structure made out of metal drywall studs and fiberglass reinforced polyurethane panels and covered with a carport or a similar structure experience any noticeable contrast from that inside their homes during the winter when pollen and mold and grass seed are way way low in the outside environment. (summer time they are off the charts) My experiment high in the mountains in raton, nm got interrupted by this unseasonably warm winter. Sucks too cause the trip cost me a lot of money and I yeilded very little useful information from it.

Unfortunally a lot of "prinstine" areas are sprayed areially for pest and nussance plants so even when you take measures to avoid heavally populated and farmed areas you run into the same problem possibly even worse.
http://www.blm.gov/wo/st/en/prog/more/veg_eis/New_Mexico_mesquite.print.html

http://kswild.org/blm-wants-to-dram...-to-poison-the-public-with-an-auto-letter-now

http://org2.democracyinaction.org/o/5632/p/dia/action/public/?action_KEY=1280

http://www.blm.gov/pgdata/etc/media...ents__rmc.Par.9657.File.pdf/RMC0205(edit).pdf


Personally I'm skeptical of the benefits vs risk's these programs offer and think we would be much better off without them. And unfortunally I am right in the middle of this type of activity.

 

[lerae]

I am glad I came across this thread. The house I moved into a few months ago smelt musty. (i am renting a room). and I noticed mold and mildew on the bathroom ceilings, then
growing up on some french doors. Then i went into my roommates room and her window was covered w/ mold with a little plant growing out of it. My MD who is in environmental illness told me to move immediately. My landlord came and cleaned it up. its no where in my room, but i feel extra yukky living here. But, its not easy just picking up and moving being so ill. I asked him, even if was cleaned up, cld i stay. NO.
I was diagnosed w/ CFS in 2008 and Lyme w/ co-infections in 2009. Remembering back to when I started to get ill, was living in a home in Bend, OR (snow city), in an old home. I used to wake up with a tight chest until there were days, I would wake up feeling like a MAC truck had hit me, cldnt get out of bed for the day and had horrible brain fog. complete adrenal faitgue. when i moved out, i opened up the blinds and saw black mold.
I wanted to make sure my home (i owned in portland) was mold free, and had two inspectors come out to do moisture tests. almost all was clear.

1.) what i heard about lyme/cfs is that our bodies are so compromised that we are not able to make the antibodies to keep normal amounts of mildew and mold out of our systems?
2.) I heard that once you leave the environment, your body rids itself.

so, in the meantime, someone told me about Thieves oil (a great story behind it) to help with the toxin overload. And then someone else mentioned i should breath ozonated olive oil...which i am not sure how to do with my machine yet.

Can our bodies rid itself once we are out of the environment? I was told that it is the biggest wall separating lyme patients from truly healing from our illness. but was not really
told how to rid my body of it. I just notice i get more weak, my heart beats faster, etc. Anyway, easier said than done with moving. my roommates are totally fine.
Has anyone used Thieves essential oil?

 

[slayadragon]

Hi Lerae,

Glad to see your post. Where are you living now? Are you still in the musty house? What town are you living in?

Many CFS patients get sick in moldy homes. This is common enough that it seems to be a risk factor for the illness. We need to do a study on that.

Once people with CFS get sick, it results in a hypersensitivity response to additional exposures of toxic mold and other similar toxins. This certainly is the case for some sufferers, and I believe that it is the case for all of them.

The hypersensitivity reaction causes people to be reactive to a) moldy buildings, b) the outside air in some places, and c) possessions contaminated from moldy buildings and the outside air. If people can get free from all three sources of contamination, they can begin to heal (though admittedly this can be a bit of a challenge!).

What people are reacting to is the toxins on the mold spores, not the mold spores themselves. But it does seem that the immunological problems in our bodies are influential in causing people with ME/CFS/Lyme to be particularly reactive to them.

I have heard that Thieves Oil will kill mold, but unfortunately that is not that helpful since dead mold is just as toxic as live mold. In fact, if mold colonies are killed, this can make them even worse (because they then tend to release all their toxic dormant spores at once, in the hope of making more colonies).

Ozonated oils may help to kill certain pathogens in the system, but I've not heard that they do anything to help with the toxins in the system from breathing toxic mold.

There are things that can be done to try to remove mold toxins from the system, but it takes a long time. From what I can tell, people need to be in a really good place to do it successfully.

Best, Lisa

 

[lerae]

Hi Lisa-

Thank you for your information. I am still living in the home. And I seemed to get worse after they cleaned it off the walls and ceilings. my heart is doing skips again.
this makes me want to leave tomorrow. it is really subtle tho. but for us, does not take much. its so hard to just pick up and move.

Can you suggest ways to help our bodies illiminate the toxins once we leave?

thank you-
barbara

 

[slayadragon]

Hi Barbara,

Of course, it's very hard for people to move. And the really unfortunate thing is, if they bring their contaminated possessions with them, most people find that they aren't helped very much just from moving. Depending on where people are located, the outside air can prevent them from making any progress too.

If people manage to get really clear of this stuff though, their bodies will start to eliminate it naturally. At that point, they can help it along with various treatments, such as binders (e.g. cholestyramine) or sweating.

There's definitely an art to doing this right, so if you're really interested in pursuing it, we should discuss it more and I should send you some information to read.

Best, Lisa

 

[antares4141]

Back in 07, I went on craigs list and found a 2 year old house to move into, it was pricey, I rented a single room and split utilities. Might want to look into that though if you ever get in a postion where moving is an option.
The optimal new house would be constructed from blocks, not wood and a bonus would be if the non load bearing walls were constructed with metal drywall studs. (good luck on that)

Than all you have to worry about is if the house has ever had any water problems (common in today's poorly constructed homes) and the owner is forthcomming. Preferable not to move into one with animals cause they will probably be spraying for flees and nobody with cfs needs that.


A little over a year ago I thought elimination diet's were silly and finally after 14 years came to the rude awakning for me anyways this is arguably as important as mold avoidance.

My neighboor gave me a piece of meatloaf and I could taste a hint of gravey, I think she scraped it off cause she knew I am gluten intolorant. People just don't understand. I still blame myself though, I kept eating it even after I tasted the gravey. It put me in a very dark place for the last 4 days each day getting a little better than the prior.

It's funny before this discovery I was just barely above bed ridden, able to watch tv and do minor household chores on good days. Now I can do 3 or 4 hours of light work a day (good days still have down days) without forcing myself but when I crash from exposures like the above it seems way way more difficult than before I discovered the food sensitivity when I do crash.

It frightens me cause I don't want to give up but those thoughts keep comming into my mind at times like those.

Robert Christ

 

[slayadragon]

Wow, the food avoidance has made a big difference for you then, Robert.

I know one person who went from very sick to "mostly recovered" and credits "extreme gluten avoidance" for most of that. (She has had her house tested for mold and lived there for a long time, so probably her mold exposures at least aren't terrible. And she's done a lot of detox and other treatments.)

Meatloaf usually has breadcrumbs in it, you know. So that's definitely not a good thing for you to be eating, with or without the gravy. Just plain hamburgers would be better.

I've not found that the age of the house has a lot to do with how good it is. New homes are so poorly constructed that they often go moldy very fast. But older homes can be moldy too, unfortunately. The only thing I can say for sure is that poorly maintained homes (such as those that have been on the rental market for a while) tend to be worse than well maintained ones.

Best, Lisa

 

[antares4141]

Lisa,
Thanks for the heads up on breadcrumbs, I didn't know that. My problem with older houses is that they are much more likely to have had some type of water intrusion damage that was repaired but not remediated. And as soon as you have any new moisture intrusion problems the mold will quickly colonize those areas as well. The older a house for me the more scary they become. But I do agree with you new houses are far from any guarantee your not going to have mold.

 

[triffid113]

I'd be interested to know whether anyone who has notable recollections of black mold in their homes around the time of onset also has 'itching' or skin sensitivity (aka allodynia or peripheral neuropathy). I've only found one other person who describes exactly the same itching symptomology as myself, and they like me are very suspicious of the severe black mold in the basement at the time of their onset. If I could compare notes with a few more people with similar symptoms of itching, that could be very interesting...

I get tactile allodynia in response to certain things. The only thing I know for sure causes it is flea products I put on my cats.

 

[Franklin White]

We had large amount of black molds in our bedroom wall. It might have caused due to some leak on the roof and we did not realized it until we moved the cupboard and were shocked to found our white color wall turning black due to mold. My friend suggested me to contact a public adjuster who was his friend. The PA came and investigated the entire situation and filed claim with our insurance company. He managed all the paper work found out where the leak was from and also the cause of the leak. He called the plumber and other professional required. Arranged a meeting with the insurance company and took all the initiative.
public adjusters Florida

 

[maryb]

Its true about water damaged property. A friend of mine had a leak which caused substantial damage - she had to move out and the whole kitchen re-done.I called to see her in the winter - the mould smell hit me as soon as I walked into the kitchen - it was overwhelming - yet its a new space!! (18months old) - why oh why can't other people smell it? It would make life so much easier than me walking round sounding like I'm mad saying 'can you smell mould' My husband couldn't and of course the resident obviously couldn't. I've given up visiting people especially in the winter, okay if you can sit outside but other people's homes are a no no in general.

 

[*GG*]

Its true about water damaged property. A friend of mine had a leak which caused substantial damage - she had to move out and the whole kitchen re-done.I called to see her in the winter - the mould smell hit me as soon as I walked into the kitchen - it was overwhelming - yet its a new space!! (18months old) - why oh why can't other people smell it? It would make life so much easier than me walking round sounding like I'm mad saying 'can you smell mould' My husband couldn't and of course the resident obviously couldn't. I've given up visiting people especially in the winter, okay if you can sit outside but other people's homes are a no no in general.

Probably because these things happen gradually, so you "grow" accustomed to the smell. Like people who never wash get used to their own Body Odor!

GG