Mold Avoidance and My Possessions

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lostleaf, Apr 15, 2013.

  1. lostleaf

    lostleaf Member

    Hi Everyone-

    I was diagnosed with CIRS (www.survivingmold.com) two weeks ago. My doc said I need to move to a new home and leave all my possessions behind.

    I have come to terms with losing things I have sentimental attachment to. I only lose the thing, not the memory. But I am still stuck on cost. Replacing everything is expensive.

    The two big things for cost are my car and my computers. I just have no idea where I would get the money to replace my car right now. Can it be cleaned?

    I work from my computer - I need a good computer. It's set up just the way I like it. I also have a backup computer that has saved my butt a couple times. I regularly use a can of air to blow dust from the vents, so I know it gets dust inside, which would imply it also gets mold spores inside.

    It seems like there has to be a more refined solution to the fate of one's possessions. I've learned that books, papers, photos, and fabric are definitely goners. But what about ceramic, plastic, glass and metal? Can they be cleaned?

    For instance, I have a set of glassware that I like because it's colored, but more importantly, the glasses are nice and heavy, so I am less likely to spill due to my tremor. Glassware isn't as expensive as other things to replace and I would totally let these go if it meant I could be healthy. But glass is not nearly as porous as paper. So, can they be cleaned?

    Another example: I have an expensive piece of art that I just got and love. I will let it go if I have to, but do I have to? Can it be cleaned? It's just solid metal. (Not sure what kind.)

    I am hoping that someone has put together a book or website that lists all kinds of household items, and tells which you have to get rid of, and which are possible to clean. (and how to clean them.) Probably anyone who has gone through this process has been too tired to collect the info, but it's worth an ask.

    Me and my pocketbook thank you.

    Kim
  2. Forebearance

    Forebearance Member

    Hi Kim,

    I am so sorry to hear about what you are going through.
    I went through the same type of move in the spring of 2008.

    The difference was that back then, hardly any doctors knew about CIRS.
    Instead of being told to do the move by a doctor, I decided to do it myself, based on the experiences of other people with CFS that I had read about.

    In my opinion, you should believe your doctor. (unless you think s/he is not a good doctor) I had to start over with all new things in a new home.

    But what your doctor isn't telling you is that you don't have to throw away your sentimental items. I put mine in storage. There is a good chance that some day I will be able to stand them again, if I can get well. I just can't live with them right now.

    I know storage units cost money, especially the climate controlled kind, but it was worth it to me to save my precious heirlooms and photos and art. And etc.

    It's possible to clean the mold spores off of things, but the toxins are very hard to remove, because of the bonds they make with objects. The toxins can denature with time, though. They gradually get less poisonous.

    Unfortunately, computers really attract and hold onto mold toxins, and then they radiate them out again. I have been through several computers, and then finally I got an iPad because it was getting so expensive.

    I had to replace my car. I leased a car because it was a less expensive option, in the short term. I also like being able to trade it in and get a new car every so often, for health reasons.

    My other suggestion is to not buy a whole bunch of new stuff. After you set aside or get rid of all your possessions, it is safest to start by just buying the bare essentials. With time you will find out how your immune system is reacting to being away from mold toxins.

    This can be a tough process to go through. But you can think of it like a patient with cancer, who has to shave her head and go without hair for a while in order to get better. You may have to do some unusual things in order to get better, but it will be worth it.

    I don't know if you have the energy to go back and read old threads, but in March-June 2008, I was going through this stage and was discussing it on the board with other people.

    Much love,
    Forebearance

    [This Message was Edited on 04/22/2013]
  3. Forebearance

    Forebearance Member

    Hi Kim,

    I am so sorry to hear about what you are going through.
    I went through the same type of move in the spring of 2008.

    The difference was that back then, hardly any doctors knew about CIRS.
    Instead of being told to do the move by a doctor, I decided to do it myself, based on the experiences of other people with CFS that I had read about.

    In my opinion, you should believe your doctor. (unless you think s/he is not a good doctor) I had to start over with all new things in a new home.

    But what your doctor isn't telling you is that you don't have to throw away your sentimental items. I put mine in storage. There is a good chance that some day I will be able to stand them again, if I can get well. I just can't live with them right now.

    I know storage units cost money, especially the climate controlled kind, but it was worth it to me to save my precious heirlooms and photos and art. And etc.

    It's possible to clean the mold spores off of things, but the toxins are very hard to remove, because of the bonds they make with objects. The toxins can denature with time, though. They gradually get less poisonous.

    Unfortunately, computers really attract and hold onto mold toxins, and then they radiate them out again. I have been through several computers, and then finally I got an iPad because it was getting so expensive.

    I had to replace my car. I leased a car because it was a less expensive option, in the short term. I also like being able to trade it in and get a new car every so often, for health reasons.

    My other suggestion is to not buy a whole bunch of new stuff. After you set aside or get rid of all your possessions, it is safest to start by just buying the bare essentials. With time you will find out how your immune system is reacting to being away from mold toxins.

    This can be a tough process to go through. But you can think of it like a patient with cancer, who has to shave her head and go without hair for a while in order to get better. You may have to do some unusual things in order to get better, but it will be worth it.

    I don't know if you have the energy to go back and read old threads, but in March-June 2008, I was going through this stage and was discussing it on the board with other people.

    Much love,
    Forebearance

    [This Message was Edited on 04/22/2013]
  4. sunflowergirl

    sunflowergirl Active Member

    She deals with the mold issues. They lost everything from the hurricane, but she's been slowly getting her books cleaned.....I believe in the microwave. I know she can give you a lot of advise.

    A tough thing that you two have to contend with. I wish you much luck with whatever you must do.

    Take care....
  5. ILoveGreen

    ILoveGreen New Member

    1. Re the mold itself: Is it visible? Have you had air sampling done?

    2. If the mold is caused by leaky pipes or structural damage, wouldn't your landlord be responsible for the repairs and at least a portion of your moving and/or replacement cost of contents?

    3. Is the Dr. 100% certain of his diagnosis of your condition? I have learned to ALWAYS get a 2nd opinion, especially on something that has such an impact on the rest of my life. If your Dr. is a true professional he/she will not be offended.

    4. I have been through this myself (got very sick and chronic allergic asthma). I discarded many items unneccessarily. I l later learned that ozonization kills mold. The website is either biozone.com or else try googling biozone for help finding out how to ozonate your possessions.

    5. Good luck! Feel better!

    Andrea
  6. lostleaf

    lostleaf Member

    thank you, sunflower. i will definitely look up windblade.
  7. lostleaf

    lostleaf Member

    hi andrea-

    thanks for your reply.

    1. i have seen mold here in my condo. i haven't done any air testing. i know i will have to move from here, and from what i've read, the accurate tests cost hundreds.

    2. i know some people sue over mold in rentals. i haven't thought about it because it sounds really overwhelming and i already have more than i can handle. i have no energy to fight anyone right now. i don't know. the financial help would be nivpce, but i am just so exhausted.

    3. i should be getting my lab test results any day now. i forget which - there were 4 or 5. one was the genetic one.

    there are so few docs who know about these autoimmune diseases. i did look for a doc for a second opinion, and there are a couple who might be able to do the trick. i'm waiting to see my labs, and i am going to take it from there. so many tasks, so little energy.

    4. thank you for the biozone tip! it sounds like you discovered it too late- do you know anyone who has successfully done it?


    are you feeling better now? i hope so! what has been the most healing for you?

    kim
  8. Mikie

    Mikie Moderator

    I talked to our county health expert on mold after Hurricane Charley caused our roof to leak. He said that once everything is dry, and anything with mold visible on it discarded, it is vital to keep the ambient air inside dry. It may involve a dehumidifier/air cleaner.

    Mold spores are always in the air. If conditions are right; i.e., humid, the spores will start to grow. We all have humidistats. If we go away, we set them so that when the humidity reaches 60 percent, the A/C comes on to dry the air. Even with this, my neighbors came home several years ago and found a whitish growth on the backs of their pictures in one corner of the condo.

    It is vital to ensure that there are no gaps in tiles in showers where moisture can get behind the wall. I once had my shower retiled and when they tried to take the tile down, the whole wall came down and black mold was growing stud to stud. They had to spray it with a bleach solution and let it dry before replacing the drywall and new tile. That answered the question of why I had been waking up choaking during the night. After the new tile was installed, I never had a problem again.

    If you have photos and documents, take them to someone else to be scanned and put on a flash drive so you can print them out, unless you already have them digitized on your computer. If it were me, I'd ask if an expert can clean the computer. Again, unless the mold spores are active and there is a continual supply of moisture, the dry mold spores which are on property should not pose a problem. Sometimes, active mold is confined to one area.

    Best of luck to you.

    Love, Mikie
  9. windblade

    windblade Active Member


    Sunflowergirl mentioned my name above. Yes, my dh and I were affected by both hurricanes in the NE. The first one overflowed the rivers and we woke up to see our house, street, car, garage, everything flooded with 5' of contaminated water. We were declared a federal disaster area.

    Because of other major crises's happening at the same time, and hoping it was mostly cleaned up, we didn't move until about the following year. I have been so sick with mold toxins in my intestines, with gastritis, gerd, and painful swelling and cracking of the lips and still have a fungus rash on my face.

    I would definitely advise to move as soon as you are able. But, do you know the source of the mold in your condo? As Mikie said, she was able to have her tiles removed and replaced.

    About cars, we lost our car when the flood waters were up to the top the first year. The second year while in the midst of searching for an apartment to move into, we heard news of impending Hurricane Sandy. My husband drove our car up 2 blocks to higher ground in case there was flooding again, and when he went to it the next morning, an entire huge tree had been uprooted and smashed it completely. People were coming from all over to take pictures - I still can't believe that one - so ironic.

    Why must you get rid of your car? Was it parked in a garage which was moldy?

    Will post this and come back with things we found helpful.

    Judy

  10. windblade

    windblade Active Member


    One of the most helpful things we found, and very cheap, was mentioned in a book 'Mold Illness and Mold Remediation made simple' by James Schaller MD, and Gary Rosen Phd. It is a box fan (about 20") and you order a MERV 11 filter, which will draw in air, and gobble up mold particles.

    But if you have an open, ongoing source of mold, like from behind a wall or anywhere, it will just pull through more mold particles into your space.

    We have moved to a bright, sunny apartment, and have 1 fan going 24 hours on each floor. We have them in the rooms where we have been unpacking the things we didn't get rid of. I can tell it's working well - the air on the landing upstairs smells fresh and clean even as we unpack. Although our LR has still so many cartons of books to go through. The mold smell there is lessening, but we are still in process.

    We got rid of our sofa ): ( loved it), all drapes, carpets, beds, mattresses, tables, my whole collection of baskets because too hard to clean. And many other things - we had been living there for 21 years, and I never even got back to pack - had to leave within 24 hours - couldn't breathe when heat came on in Autumn and blew mold spores thru heat vent.

    The second excellent help was buying a Miele vacuum cleaner. I found this thru the Allergy Buyers Club online. They are expensive, but have hepa filters and a specially designed system where no particles can escape. Learned that many vacs just spray back into air.

    All clothes can be washed in BORAX, as well as sheets, etc. Borax kills mold.

    My dh scrubbed down also the bookshelves we decided to keep with borax in water, after hepa-vaccing them. Painted shelves.

    Vinegar is good for any glass or ceramic item, or even plastic.

    Baking soda in water, or can be mixed with vinegar also kills mold; I used that for kitchen things - pots and pans, slow-cooker, etc.

    Oh - back to the first item - the box fan - don't buy one with the power cord in the middle of the fan, cause the MERV 11 filter will cover the whole back of fan. These fans sell for less than $20, and do so much. You attach filter with clear tape.

    I have MCS which is why we chose to use natural cleaners, but they are very affective.

    I am taking Nystatin, herbal anti-inflammatories, herbal anti-fungals, drinking lots of water. Had to eat only meats and veggies for 7 weeks to reduce mold in body. Mold feeds on sugar.

    I have other holistic helps from my Dr. -Hydrogen Peroxide foot soaks increases oxygen in body which kills mold. Castor oil rubs on abdomen, etc. removes toxins.

    Even with all this, and being in a mold-free place for 5 months, my mouth is so very painful with constant swelling - hurts to eat, etc. Calling my Dr. tomorrow to see what to do about it. I did get better from the GERD - and gastritis. Enzymes were another help.

    Also use plastic goggles, latex gloves, and a mask when touching anything not cleaned yet.

    Mold only came back once on our shower curtain - because the plastic rings on top we had forgotten to clean. Our kitchen is pristine, and we're just still slowly cleaning or replacing every item in the other rooms. It's mind-boggling. I had to stop doing anything - too sick. DH doing it all. I've had CFS for 21 years though.

    Our books - threw away a huge bookcase full, and all beloved collection of International Wildlife Mags. and art mags.

    Have placed kept books in full sunlight from our huge windows weeks at a time and they end up sweet-smelling. Have heard that microwave can be used also. Will try that next.

    Don't know about expensive computers. Only cleaned the outside of my laptop with vinegar and water. And screen, and around the keys.

    So sorry you are going through this, Lostleaf! Please guard your health above all else. It is so hard to get the mold out of your body, and it's so dangerous!

    Let me know if you have any more questions.
    Judy
  11. lostleaf

    lostleaf Member

    thanks for all the great info, judy.

    i can't believe your second car had a tree fall on it!! /jawdrop

    i don't know the exact source if mold in my cono. i've seen it in the shower and there is evidence of water damage in several places. since it's a rental, it just feels easier to move to somewhere newly constructed than deal with the management company and remediation. plus, in multi-unit housing, spores can travel through air ducts and vents, so they can get my place cleaned up, but then a neighbor can let mold grow in their place and the spores travel to mine and bam, we've got a problem again.

    my doc told me i needed to replace all my possessions, which would include my car. i think the idea is that spores or mycotoxins can be on me and/or my things and end up in my car. and then they can travel into my new home. i've read in a couple places that either mold, spores, or mycotoxins are sticky/waxy, so they are hard to remove from surfaces - even after the mold has been killed and/or scrubbed away.

    there are so many conflicting theories about all of this all over the internet - it's hard to know what works and what doesn't, especially when mold spores and mycotoxins are invisible! if it was a glop of peanut butter, i'd know whether i had successfully cleaned it or not. mold spores and mycotoxins not so much.

    oh, my miele!! i am lamenting because i think i have to replace it!! ($$$) i imagine there are spores all over inside it, but damn, isn't that a GREAT vaccum cleaner?? The hepa is awesome, and it just works so well all around. /cry

    i have read too many stories of people who have moved and then had to move again (and again) becuse somehow spores travelled to their new homes. i don't want to risk that, but i also just can't imagine how i can afford to replace everything.

    one thing about computers is that they draw dust inside them. that's why they sell those compressed cans of air at electronics/office supply stores. If you use one and blow into your computer's vents, a cloud of dust will come out. (and your computer will run noticeably cooler and better). Since I work on my laptop all day, I do this at least once a week as maintenance.

    So I'm thinking, if dust is in there, then mold spores probably are too. ican't imagine how to clean the inside, it definitely does not seem safe to wipe the inside down with anything, even water. on the other hand, it's hot in there, so i wonder if that would kill the spores/mycotoxins. again, i run up against an invisible enemy - if i could see it, i'd know if it was there or not.

    so this is what i am confounded by - an invisible toxin, an internet full of conflicting theories, and significant consequences for not doing something right.

    i really appreciate all the info you gave. obviously, i feel insecure about everything, but lots of things are certainly worth trying. the box fan idea is great! and that book sounds exactly like what i have been wishing for.

    i hear lots of people suggesting uses for hydrogen peroxide. the only place i've seen it is at the drugstore, and the bottle isn't really big enough for a foot soak. where does one get a bigger quantity?

    thank you again for sharing your story and all you have learned. and i am sorry you lost so many of your things (as well as your home). i like to think i am not materialistic, but i think anyone would grieve when faced when having to get rid of so much.

    peace,
    kim
  12. windblade

    windblade Active Member


    The peroxide soaks - you use the regular 3% hydrogen peroxide and use 1part HP to 50 parts water. You can use a basin to soak in. And you add 1 tsp sea salt or epson salts.

    Start out with these small amounts because of possible herxing response. But it's very cheap, safe and effective for inflammation, immune, neuropathy, etc. by bringing oxygen into the body. Oxygen kills mold. For instructions you can print out, google peroxideclub.com or look on youtube under Majid Ali - peroxide, and the video there explains how it works.

    He is my Dr. and works with CFS also. He wrote the book "The Canary and Chronic Fatigue'. There is a free video series that you can find on youtube where he has 3 minute little teachings on all health subjects. There was just one on mold recently, I will see that soon too.

    Kim - did you say that you have a Miele vac without a hepa filter? Are you sure there is no filter? Because apart from the box fans I described, the Miele vac has been the biggest tool we use. We've vacc'd every book, piece of furniture, everything possible. Although still in process.

    Mold spores even when dead are still toxic. That still sound confusing to me. But for instance, my dh and I will try microwaving our books, but then they will still have dead mold spores on them. But they can then be vacuumed, and they're gone.

    Do you have anyone to help you with any kind of cleaning?

    I'm going to look up now your CIRS diagnosis. I'm SO sorry that you are going through all this! Try and take deep breaths also when you're outside - more oxygen in the body. There are a lot of tools to use to get rid of the mold. Also MERV 11 filters can be put in heating systems and air conditioners.

    Try and do things slowly, so as not to get too stressed. I know, I know, easier said than done. I was going on adrenaline for months after having to leave my home within a day - never went back. And after the second hurricane. Now I'm doing lots of deep breathing in our new place because I can tell that there is no mold here. Can you smell the mold in your condo?

    I stayed with friends for a month after leaving my house. They live in the mountains, are nuns in a convent :), and they took such amazing care of me. Bringing food to me - all meats and veg. so I could stay on the food program my Dr. gave me. I even had an elevator to use since I was so weak. That helped me to start recuperating.

    Judy