Anyone recovered after discovering residential toxic mold exposure?

[greyham]

I've been ill on and off for most of the 5 years since moving into my current residence; and ill continuously for the last 2 of those 5 years. I've read some scary stuff about toxic mold exposure, and am considering paying a truckload to get a building inspector to do some air quality samples to check for mold spores in my home. Everything else I've tried has failed to improve my symptoms, and I'm getting desperate. Has anyone else gone down this path, or know of anyone who has recovered by discovering and correcting mold exposure in their building? I'm talking "I'm cured!" here, so I'm aware that people who have successfully done this probably don't spend their time reading this board.

There's another thread discussing some of these issues, but it's over in the XMRV section. Nobody seems to have posted saying "I fixed the mold problem in my building, and now I'm better."

Thanks, Graham

 

[creekfeet]

When my kids and I became ill the mold in our then-home was one suspect but blood tests showed it was not the cause of our illness and living for two years in mold-free homes has not cured us so here's one negative answer.

Who knows, maybe mold is making you sick, or sickER. But if ya got a retrovirus ya got a retrovirus and no amount of cleaning your living environment will cure it.

 

[caledonia]

Do you feel any better when you go on vacation?

There are at least two people who have gotten cured by avoiding mold - Slayadragon and Erik Moldwarrior. If you have mold illness, the cure is not easy. You have to leave your house and all of your belongings and go live in mold free area (like camping).

You need to talk to Slayadragon or at least find some of her posts. Read the book Mold Warriors by Ritchie Shoemaker. There is also an eye test you can take online for cheap which shows if you are reacting to stuff. http://www.chronicneurotoxins.com/

 

[Forbin]

Who knows, maybe mold is making you sick, or sickER. But if ya got a retrovirus ya got a retrovirus and no amount of cleaning your living environment will cure it.

This is true, but although a retrovirus cannot be “cured,” it may not always cause illness. The original Science paper suggested that 3.7% of those infected with XMRV are “healthy” and the recent NIH/FDA “leak” seems to put that number at between 4%-7%.

I have read in various places that some number of people with CFS/ME seem to spontaneously “recover” within the first five years of illness. If XMRV is the cause of CFS/ME, this ability of some people to “recover” (or rather, to enter “remission”) might suggest that the retrovirus can, in some circumstances, be returned to some kind of “latency” and that the immune system can re-establish an equilibrium with and/or suppression of the virus. How this might happen is obviously unknown at this point, but it at least seems possible that eliminating other stresses to the immune system, whatever their nature, might be helpful.

 

[Lisa Simpson]

This is true, but although a retrovirus cannot be cured, it may not always cause illness. The original Science paper suggested that 3.7% of those infected with XMRV are healthy and the recent NIH/FDA leak seems to put that number at between 4%-7%.

I have read in various places that some number of people with CFS/ME seem to spontaneously recover within the first five years of illness. If XMRV is the cause of CFS/ME, this ability of some people to recover (or rather, to enter remission) might suggest that the retrovirus can, in some circumstances, be returned to some kind of latency and that the immune system can re-establish an equilibrium with and/or suppression of the virus. How this might happen is obviously unknown at this point, but it at least seems possible that eliminating other stresses to the immune system, whatever their nature, might be helpful.

The most dramatic remission I've ever achieved was about five years into the illness (more than 20 years ago) on a "candida-free" diet which was supervised by a naturopath. It basically involved cutting out all sugars, eating a low grain, high fresh foods, fish, meats etc, avoiding molds and other possible allergenic substances where possible. I also took herbal supplements he prescribed. I remember he believed molds were a major stressor of the immune system. It took a load off my system I guess and allowed my immune system to get the upper hand, leaving me almost symptom free for the couple of years I was on it, though not cured. It certainly got me up out of my bed. Unfortunately, I went through a some major life stresses after a couple of years and then I became horribly ill again. Nothing helped after that and I've never had such a dramatic improvement on anything ever again really (nothing that lasted so long). I do find that I feel better overall if I cut out sugar from my diet though.

I have a sneaking suspicion that the people who have made a full recovery from "CFS" were actually suffering from some other illness. The introduction of "CFS" in 1988 considerably muddied the waters because it had the effect of lumping many conditions together. It is said that people with true ME never recover (i.e recovery from that illness is not possible).

Many of our questions will be answered surrounding this when a consensus is reached on XMRV I think.

 

[floydguy]

As someone who has gone the mold route, I would advise trying to live somewhere else that is known to be mold free for a period of time. If you feel better then it might be worth moving or paying somebody to come in mitigate mold exposure otherwise it could be a waste of money.

I feel better avoiding mold but haven't noticed much difference between mild avoidance and extreme avoidance. However, one thing is for sure everybody's body reacts differently...

 

[lono]

Options for proceeding

If it's possible, why don't you see if you have the abnormal biomarkers that are associated with this. Essentially if you're affected your body is stuck in a chronic inflammatory response syndrome (CIRS) condition, i.e. inflammation has ramped up and never goes back down.

There are a bunch of possible tests, but my opinion is that the biggest "bang for the buck" is to see if you have low melanocyte stimulating hormone (MSH), low vasoactive intestinal peptide (VIP), elevated C4a and elevated TGF-Beta1. If you don't have these abnormal biomarkers then chances are that other factors are more important contributors to your CFS/ME.

 

[xchocoholic]

FWIW. I'm not sure if I have mold in my house or not but I can tell that I can breath better if my dogs have just been bathed and all traces of dog hair removed. Meaning floors mopped, couches vacuumed, linens cleaned, etc ... This is just one more allergen that I have though. My skin prick testing and stool testing has shown that my body is over reacting to many substances. BUT even if my house was clean or I was visiting somewhere that was totally clear of all allergens, if I ate the foods I'm intolerant of, I'd still react to them. Gluten is my kryptonite ... ; )

lono,

I was wondering about this ... Can you please explain this ? It seems like there are soooo many tests out there are these really the best ones to determine if we have a mold allergy ? And are these specific for mold allergy testing or will it show that we have other active allergic reactions too ? I have high eosinophils most of the time. I have a great integrative doctor now who I'm sure would run these tests for me ... thanks ...

If it's possible, why don't you see if you have the abnormal biomarkers that are associated with this. Essentially if you're affected your body is stuck in a chronic inflammatory response syndrome (CIRS) condition, i.e. inflammation has ramped up and never goes back down.

There are a bunch of possible tests, but my opinion is that the biggest "bang for the buck" is to see if you have low melanocyte stimulating hormone (MSH), low vasoactive intestinal peptide (VIP), elevated C4a and elevated TGF-Beta1. If you don't have these abnormal biomarkers then chances are that other factors are more important contributors to your CFS/ME.

 

[slayadragon]

Here is a thread that includes a great deal of information about this topic.

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

I will be happy to address any questions that people have in as much detail as they like. The questions here are discussed on the thread, as a starting point.

Erik Johnson is a member of the original Incline Village cohort. This is the one that Judy Mikovits and the WPI included in their XMRV paper in Science. He was repeatedly and extensively tested by Dr. Peterson and Dr. Cheney, who stated repeatedly that he had the same disease as the other members of the cohort. Byron Hyde agreed that these individuals had what previously was called M.E.

Insofar as CFS is what the people in Incline Village had, and what Judy Mikovits and the WPI have been studying, Erik has/had CFS. This does not seem to be a point that anyone who is knowledgeable about the disease has suggested is not the case.

My CFS was classic Canadian Criteria and increasingly severe (low NKC function, low suppressors, high Rnase-L and LMW Rnase-L, high apoptosis, extremely high interferon alpha; HHV6 titres sufficient to qualify for Montoya’s study, reactivated EBV, CMV, mycoplasma, chlamydia pneumoniae, Lyme; exercise inability and post-exertional malaise; cognitive issues described in Osler’s Web; agitated exhaustion and sleep difficulties; need to stay within an “energy envelope”; a dozen food sensitivities; moderate MCS; various gut problems and pathogens; dysregulation of a variety of hormones; extreme die-off to doxycycline and to Famvir; huge detox reaction to the supplements on Rich’s methylation protocol; gradual-then-sudden onset apparently triggered by high stress level, a series of Hepatitis B vaccines, a head injury, a pregnancy/miscarriage and a bad flu; mostly disabled for 12 years, bedridden 18-22 hours a day for the last year).

Other people who clearly have had classic Canadian Criteria CFS also have recovered or experienced substantial improvements as a result of addressing mold/biotoxin issues.

Whether all CFSers have issues with regard to toxic mold/biotoxins, and whether they would benefit from addressing such issues, I cannot say for sure.

The idea that people who have recovered through this route had something other than CFS does not seem to me to be supportable though.

I read this board sporadically and don't always see every post on mold. If folks want me to look at a thread, please either pm me or send me an e-mail.

I'm glad to see interest in this topic.

Best, Lisa (slayadragon on ya-hoo)

 

[slayadragon]

X-Chocoholic, you're from Florida. I don't know where you live, but have you ever come into contact with red tide? If so, how did you feel during that exposure?

I'm of the tentative belief that those of us who think that we're "extreme mold responders" actually are "extreme biotoxin responders." The substance that I'm responding to the most at this point is stuff I encounter outside rather than inside, and often in the vicinity of streams and lakes.

Gerwyn suggested to me that it might be cyanobacteria, which indeed is a huge problem in Lake Tahoe (and especially was during 1984-1985, when Erik's cohort got really sick).

I'm thus interested in whether other CFSers who've been exposed to biotoxins of various sorts might be responding to them as well.

Thanks much for any info you might be able to provide.

Best, Lisa

 

[xchocoholic]

Hi Lisa,

I live on the east coast of Fl and only remembering seeing Red Tide here once. It was all over the news for everyone to stay away from it regardless of their medical condition. Those with medical conditions were told to see their doctors if their symptoms warranted.

I had been walking my dogs every nite when this hit us. I noticed a small increase in my congestion level but my dogs were worse off than me. At that point they both were losing their hair and getting rashes all the time. Their vet simply told me to stop walking them until it clears up. She said that this was worse on them because of their size. I kept them in and on Benadryl and steroids for awhile.

FWIW. I actually think it was what I was feeding them was making them more sensitive to flea bites. They eat a totally grain free dog food now and even they may get the occasional flea, their coats are fine and they aren't frantic like they were ... As far as I can tell, their allergic reaction to fleas is gone.

I see this sort of improvement a lot in the GF + free arena. Thankfully, for the most part, we can control what we eat ... I'm super sensitive to gluten so even a tiny bit will make me sick.
I suspect this is because I'm a DQ2 ... We're known to have nuero problems from gluten.

I didn't realize that some thought anyone sensitive to mold didn't have CFS. Seeing as how we don't have any clear cut diagnostic criteria for CFS, I don't know how they could assume that. That's why I was so interested in what lono said.

TC ... Marcia

 

[Dainty]

Count me as a "it didn't help before but I'm having another go at it" group.

I have residential mold. My place is extremely humid (spilled salt becomes water in a matter of hours, all metal is rusting out, etc) and I can only manage to clean it a couple times a year. Thus, the mold grows in just about every corner and out of the way place it can find. I'm able to tolerate my caretaker doing some cleaning, but that only manages to take care of the most visible worst areas.

Some time ago I rented a professional ozone generator (like this) to see if taking care of the mold would improve my symptoms. This isn't your average ozone "air purifier"....the ozone output is so high that it's not safe for anyone to go inside the room or building it's in while running, that is why it has a timer for automatic shut-off. So this stuff definitely kills mold and any other stuff that might have been in there.

After the treatment, I did not notice any particular change in symptoms, which was surprising to me. It hought it would help a lot. It did take a while for the mold to come back, though.

However, now I'm trying a different approach. At long last I think I've found a dehumidifier that might work for me, and if so it should substantially reduce the amount of mold I have. If my symptoms improve in conjunction to getting the dehumidifier I'll probably ozonate the place again for good measure.

If there's still no notable improvement, then oh well. I still think I'm better off living without mold.

 

[slayadragon]

Killing the mold with a dehumidifier, ozone machine, Thieves Oil or anything else does not solve the problem.

Even if all the mold is dead and stays dead, the toxins remain.

And the toxins are what make us sick.

Best, Lisa

 

[Dainty]

Killing the mold with a dehumidifier, ozone machine, Thieves Oil or anything else does not solve the problem.

Even if all the mold is dead and stays dead, the toxins remain.

And the toxins are what make us sick.

Best, Lisa

And cleaning doesn't help?

 

[slayadragon]

The mold that makes us sick usually is hidden inside walls, so it can't really be cleaned.

In addition, the toxins are very sticky. Even if the spores are removed, the invisible toxins coat everything and continue to have a big effect on those of us who are hyperreactive.

Proper remediation (containing areas with plastic and careful removal of the moldy materials according to hazardous materials protocols) can reduce the extent to which a place is problematic. That won't make it 100% okay for CFSers who have mold problems either, though. (I discuss this on the "Control Points" thread.)

I wish I could be giving people different answers than these.

Best, Lisa

 

[Dainty]

Oh, okay.

I've read that mold inside walls is usually because there are wood products for the mold to feed on, such as wall studs and the paper in drywall and insulation.

My walls don't contain any of that. I suppose I'm the exception.

The mold that makes us sick usually is hidden inside walls, so it can't really be cleaned.

In addition, the toxins are very sticky. Even if the spores are removed, the invisible toxins coat everything and continue to have a big effect on those of us who are hyperreactive.

Proper remediation (containing areas with plastic and careful removal of the moldy materials according to hazardous materials protocols) can reduce the extent to which a place is problematic. That won't make it 100% okay for CFSers who have mold problems either, though. (I discuss this on the "Control Points" thread.)

I wish I could be giving people different answers than these.

Best, Lisa

 

[slayadragon]

What do your walls have, Dainty?

Lisa

 

[taniaaust1]

One part of the many parts of my issue i do think is mold. The house ive lived in for past 18 yrs (with a 5 mth break) at times has a major water issue. I had to even throw out carpets as they went all moldy. Water was entering the house throu a crack in roof tile i think.. then running down in walls and then along underneath floor boards and then condensation up throu the floor. I had big wet patches and if one slept on mattress on floor one would wake up with a wet bed.

I also had no ventilation in the bathroom and once i got sick couldnt get the mold off the ceiling, so ended up with a completely mold covered ceiling of mold of 3 different types. Im in Australia and dont know if we have toxic mold here but one of the types of mold growing on that ceiling was a very fine black kind of mold which just spread out in huge areas (this is the mold which concerned me..i thought i could see traces of it in over sections of house)...then there was a yellow mold which was a lot denser and affected in small patches. i cant now remember what the third mold looked like (it could of been a reddy tinged mold in colour).

When i moved out of the house for 5 mths (not to long ago).. i got much better while away (thou i still did have POTS, but the actual CFS was so so much better), after a couple of mths of moving back to this house i started to go downhill again. (Im currently trying to move out into another government owned house due to my health.

stuff. http://www.chronicneurotoxins.com/ i suggest to try those tests. Me and my friends did them and i found they had normal results...where mine were indicating a possible issue.

 

[Dainty]

What do your walls have, Dainty?

Lisa

The interior walls are enameled steel, trim and doors are the same. Window frames are aluminum. Wall studs are either steel or aluminum, I can't remember which. Exterior is aluminum. As far as I know there is no insulation (obviously not built to code) and yes, winters are extremely chilly despite all the heaters I have. Keep saying I'll change that next year by applying sheets of cork to the interior, but that hasn't happened yet.

I sometimes forget about how where I live can impact my answers to these sorts of things. I'm sorry for being argumenative, as you clearly have a wealth of knowledge on the subject.

 

[slayadragon]

Just this week, I went to visit a recovered CFSer who goes on these boards by the name StormySkye. She was sick with CFS for about 20 years, then recovered about five years ago.

She attributed her recovery to the use of specific supplements (ThreeLac probiotic, green foods, some herbs to support immune system function and kill Lyme). And after our discussion, I believe that the ones that she used were helpful.

However, she also lives in the best state (Kansas) and the best house I've ever been in, mold wise. And it's clear that she is a mold responder.

Her house was built in 1870. It has plaster walls (no drywall), with a four-inch gap between the inner and outer walls. There is no insulation (except for a small amount of styrofoam underneath the aluminum siding). There are vents on the inner walls to allow air to get inside the walls.

I think this is the proper way to build a house.

Is that not "to code"?

Best, Lisa