Mold avoidance Khalyal's post..

Discussion in 'Fibromyalgia Main Forum' started by Khalyal, Aug 2, 2008.

  1. Khalyal

    Khalyal New Member

    It all started with a post I wrote in September of 07, called "Maybe my house is killing me?" If you get a chance, take a look at it. I was deathly, deathly ill.

    A lot of good information has disappeared from that post, because Erikmoldwarrior's posts were all removed when he was banned from the board. But my replies to him kind of indicate what he was talking about.

    Since then, I have gone into extreme mold avoidance mode. My husband and son remediated the house the best they could by replacing floorboards and walls, but the house and the contents of the house have obviously been contaminated by mold spores and the fumes they put out. I have not been able to live in that house without confining myself to a separated area, and even then I feel the pain.

    We got rid of everything and made several trips to New Mexico to amass safe things for our eventual move. Our belongings, even our clothes, got pared down to nothing, and the few sentimental things that we kept got put into storage.

    We moved to New Mexico, to a place that has felt safe for me for the last year or two. We brought nothing.

    I can't say that I am completely healthy. I had underlying immune system issues before this whole CFS business began, due to prior toxic exposures of several kinds. But the dismal, horrifying, deathly illness of CFS has receded to the shadows. It's presence is ever there, reminding me to avoid mold religiously, because every time I run into a plume or enter a contaminated building, the struggle against desperate illness begins.

    But between avoidance and religiously supporting my liver/immune system, life is starting to seem like a good thing again.

    The next project is to work on some kind of MECU, as Erik strongly, strongly suggests. I can definitely see the need for having some kind of "escape module", a place to decontaminate and get away if mold exposure occurs. (I think MECU stands for Mobile Environmental Contamination Module?)

    I'm not saying this is the answer for everyone. Extreme mold avoidance is, well, extreme. But if you are one of the 25% of the population that is estimated to have the gene expression for this, it may well be worth a shot.
    [This Message was Edited on 08/02/2008]
  2. tansy

    tansy New Member

    Hi Khalyal

    This is great news especially the improvements in those symptoms that you described so well. Reminding everyone here that you were deathly ill is important too; the terms CF and CFS do not reflect how ill many of us are or feel. Many describe ME/CFS as feeling poisoned.

    I know you still have some way to go; but improvements such as this mean better quality of life and that's very important.

    You're a real trooper: persuing mold avoidance required major changes when you were still very ill; that took a lot of courage and determination.

    tc, Tansy
    [This Message was Edited on 08/02/2008]
  3. mezombie

    mezombie Member

    Great post, Khaly!

    This is something so many people overlook.

    One clue is feeling much better in one location than another. For those able to take a vacation and/or stay temporarily in a different environment, it seems worth a try.

    [This Message was Edited on 08/03/2008]
  4. Khalyal

    Khalyal New Member

    Thanks, both of you. Yes it's a struggle, and yes I have a long way to go, but even if this is the best it ever gets I'll TAKE it! Compared to how I was, this is vastly better.

    I have spent a lot of time bedridden over the course of this illness. There was a period where I could not stand up on my own. One of my worst symptoms has been a ghastly swelling of the spinal cord/brain which led to monstrous headaches, lack of muscle coordination, and the head bobble that made motor skills a thing of the past. My husband was loading me into an office chair and pushing me down the hallway to go to the bathroom.

    I've also spent a lot of time dwelling on resentment of all the things this disease has taken from me. I used to be very athletic and active, worked hard at my job, and ran circles around myself.

    Now, I don't see any of that in my very near future, but I have been able to walk the dog around 3 blocks for the first time in years. I hope that as time goes on, and as I spend cumulative time without exposure to the mold toxins that seem to have got me to that bad place, I'll regain more and more of my old self. But even if that never happens, this is much, much better.

    Erik says that prolonged exposure to the toxins removes more and more of the anti-inflammatory cytokines, and prolonged avoidance can rebuild these same cytokines. I am finding that avoiding the mold toxins is also abating my MCS symptoms. I can wear makeup for the first time in years, for instance. I also don't get deathly ill from household cleaners, etc.

    Perhaps removing the huge toxic load that stachy mold creates in my body allows my body to process the other daily toxins more correctly.

    Hugs to all
  5. jmq

    jmq New Member

    I am so glad I saw this post....I think I have mold in my bedroom furniture or airconditioning. I was so well in New Zealand where the window were wide open with plenty of fresh clean cool air. Now back in Florida, I feel so sick in my bedroom. Even going into another room in my house helps....not completely but I feel a bit better. Now my daughter is showing fatigue and pain from being home all summer ( she is only 13).

    I cant afford to throw out all my furniture and carpeting. If I knew it was FOR SURE...I would do it and sleep on a mattress.. Is there tests you can buy to test for molds? I even bought a air hasnt helped much.

    Any suggestions????

  6. Slayadragon

    Slayadragon New Member

    I just wrote a couple of very detailed posts on this topic on a thread called "How do I do thorough mold/chemical testing in my home" started by boltchik.

    They're really long, but may give you a sense of those of us who are "Mold Warriors" (Khaly included) are thinking about and recovering from the problem.

    Let me know if you want to discuss further. I will keep an eye out for this thread.
  7. ladybugmandy

    ladybugmandy Member

    i never thought avoiding mold could lead to so much improvement but the posts on this board have swayed me. i recently had my air quality tested and some moldy drywall inspected.

    turns out we have to replace a lot of drywall which will run my mom into the thousands....but i think we will do it.

    we have a huge condensation problem on our windows in the winter (i can actually hear the water dripping inside). we ignored it for a long time, and the mold has spread.

    my uncle, who is an electrical engineer, said we should switch to some special triple glass windows but that is too expensive for my mom. a cheaper way is to use air-tight plastic around the windows in the winter, which i will have to do.

    also, i developed dust allergies many years ago but continued to live in places with carpet and A LOT of dust (i mean A LOT!). i've convinced my mom to get hardwood in the next year or so. perhaps this is why i always feel a little congested.

    this is really a "millionaire's disease". i am gonna go broke!
  8. Slayadragon

    Slayadragon New Member

    Hi Sue,

    I'm glad that you're taking a look at the mold.

    Based on my experience, it seems possible that anyone who doesn't respond well to antivirals may have a substantial mold problem. Your looking at it would be especially important from that perspective.

    I'm in the process of putting together a sort of "guide" with regard to CFS and mold. Unfortunately, it's going to be a while before I get it into good enough shape to help people.

    In the meantime, I suggest that you take a look at a thread that I wrote yesterday called "How do I do thorough mold/chemical testing in my home" The thread was started by boltchik.

    Handling mold (especially when CFS is involved). Learning as much about it as you can before you start would be worthwhile.

    To learn a bit about mold, I suggest a book called "Surviving Toxic Black Mold Syndrome" by Dr. Mary Beth Short-Ray.

    Dr. Short-Ray is an osteopath who got mold poisoning herself and now has a practice devoted to it.

    Her office is in Ann Arbor, Michigan. It occurs to me that since you are visiting Dr. Lerner in Detroit on a regular basis, it might be worthwhile for you to see Dr. Short-Ray on the same trip. It wouldn't be a lot of extra trouble, I wouldn't think.

    She seems good to me. And I certainly think she'd be able to give you an idea of whether mold is an issue for you, and some first steps in terms of how to address it.

    (Our little band of Mold Warriors who have achieved success in treating it believe that CFS'ers need to go above and beyond the standard treatments for mold in order to make really strong improvements. If you're interested, I will share those with you later. In the meantime though, addressing the mold in the manner that "regular" people do is a very good first step.)

    I'm planning to go to see her in September and will give a report on what I think of her after that.

    If you decide to see her before that, please let me know how it goes.

    Please let me know if you have any questions!

    Best, Lisa
    [This Message was Edited on 08/05/2008]
  9. Khalyal

    Khalyal New Member

    This isn't sequential or anything, I just have a few random thoughts I wanted to share.

    We never got our house tested for mold. Based on my symptoms we went looking for it, and found it in between the walls, between one of my bathrooms and the laundry room. Apparently there was leakage at one time. We also found it in between the floor and the subfloor of the hallway and the living room.

    I'm not in any way recommending that people tear their houses up looking for mold; we were remodeling anyway, and took a few extra steps in pursuit of mold. I guess my point is that this stuff can be stealthy. You can have it without ever seeing it. And it doesn't matter if your house is fairly new, a lot of newly constructed homes have mold problems.

    I've seen houses being erected, walls being built, and then no roofing done until after the structure has been rained on a few times. Mold can come in a package deal along with the keys to your brand new home.

    Also, where our mold was (inside the walls) was right next to the air intake for our central air conditioning system. That means that spores were probably blowing right out of the vents. You can't see them. But any dust in your house is probably full of them (if you have stachy).

    Mold toxins are not living things, so you can't kill them. Bleaching any areas that look moldy will not solve the problem. The spores break down into dust. The toxins take upwards of 5 years to denature, depending on the item that's been contaminated.

    One of the things to pay attention to is if, when you feel sick and lay down, you feel even worse when you lay down. You might be laying your head right down into a contamination.

    We talk about stachybotris mold a lot, and it is a stealthy, insidious mold. It doesn't have an odor. You might smell rotting wood if you've had a leak, but you won't smell stachy.

    There are other molds besides stachy that can make you sick as well. I think Forebearance had a few Aspergillus and Penicillium varieties in her apartment.

    If you are a mold reactor, though, there is nothing more important than learning some basic mold avoidance techniques. I know Lisa is collaborating with a few others to create a kind of "how-to" manual. The handful of us (Lisa, Josh, Forebearance, Desertlass, and of course Erik) who have gone down this path have had a success rate that I haven't seen matched with any other "protocol". Now, I'm not saying everyone who has CFS or Fibro has this mold reactivity, but for those that do, avoiding mold is the key to living. Otherwise we'd all still be crawling on our hands and knees, wondering in an abstract way when we would die.

    Unfortunately, one of the things that mold poisoning seems to take away is our ability to reason thing out. I was always fearless because I had an absolute faith in my ability to think my way out of a bad situation. With mold poisoning, I seemed to have lost that ability to pull various pieces of information together to see how they fit.

    And, as a result, I came out of my house on a stretcher more than once. Information hitting brain was kind of like taking potshots at a moving atom.

    Okay, that's it for now! lol!

  10. Khalyal

    Khalyal New Member

    After you've extracted yourself from the barrage of constant mold toxin exposure, you are stilling carrying an extremely high load of toxins in your body. Once your body feels "safe", it will start to detox. During this time, there is an intensification reaction to mold exposure.

    Where you used to have a constant feeling of toxicity, you no longer do. So when you DO come into contact with mold, and since your body has been busy feeling safe and releasing toxins, the reaction is immediate, specific, and can be quite severe if it is at all prolonged.

    The other night we went downtown to eat. There is a lot of character in that area, so we like to go and sit at an outdoor cafe and watch the really bizarre nightlife go by. The wind started kicking up, though, and we decided to move inside.

    We went in and picked out a booth, and no sooner did I sit down than my kidneys started to scream at me. Not that sharp pain you get with kidney stones, but more like the ache that comes with a good kidney infection. By the time our food arrived I was in full-blown toxin response...brain compression, severe nausea, and the rest of my internal organs were aching. I had to be taken outside. My husband (who really gets it now, after a year of disbelief regarding mold as the culprit) immediately took me home and hosed me off.

    This might sound scary and impossible to deal with, but I'm really thankful to have this tool. My body is reacting immediately to "badness", which leaves Absolutely No Doubt In My Mind that I must evacuate. Without this tool, I'd sit in the badness for way too long and accumulate a whole bunch more bad toxins.

    So now I know not to eat inside at that restaurant. Not a problem. It just gets added to my list.
    [This Message was Edited on 08/31/2008]
    [This Message was Edited on 08/31/2008]
  11. jenbooks13

    jenbooks13 New Member

  12. kitteejo

    kitteejo Member

    This isn't much help for big mold problems but Web MD had an article about all the mold in our pillows. They said we need to get a new pillow every year or two. I know how attached we get to our pillows but that could be a real problem for us and not even know it.

  13. Khalyal

    Khalyal New Member

    Hi Jen, you're welcome! If even one person finds this stuff helpful at all, I'll be happy.

    Kitteejo, you are dead on about the pillows, and that's part of what I was saying about laying your head down and feeling worse. You may be laying it down right on top of a mold plume, even inside your pillow. Mites abound, and the mites can actually bring poison spores with them.

    Happy labor day, gang!
  14. Khalyal

    Khalyal New Member

    I have spent the better part of the last sixth months trying to very carefully put my body into a better position to be able to handle cholestyramine to help the detox process. I've done liver flushes, probiotics, and a complete diet change.

    I've eliminated aspartame (wow, finally gave up those diet cokes!), high fructose corn syrup, and cut way down on gluten.

    I made sure my bowels were in consistent good working order.

    But I made the mistake of taking the normal recommended dose of cholestyramine (4 grams) and I should have known better. We are so sensitive!

    After taking this dose for a week, I was severely constipated and sicker than snot. The CSM no doubt was doing its job, pushing toxins out of residence and dumping them into my digestive system for elimination. But by allowing myself to get constipated, I set myself up for the toxins just to be reabsorbed into my blood stream, and it was like mold-exposure all over again.

    I went off of the CSM and within a matter of days felt fine. SO...

    Back to the liver flush and bowel health, and in another 6 months I'll try the CSM again, only one gram a day.

  15. Forebearance

    Forebearance Member

    Thank you so much for sharing your experiences with all of us, Khaly. Your example has been really helpful to me.

    I hope you can figure out what's going on in your house, jmq.

    Best wishes for your mold remediation efforts, Sue! I hope it will really help. It can't be bad, anyway, to remove moldy drywall from your home.

    In case other people are reading this who are new to idea of toxic mold poisoning, I want to add a few things.

    Note that I wasn't desperately ill. I didn't feel any different when I went somewhere on vacation. (probably because I took all my clothes with me and was still wearing them on vacation) My apartment wasn't full of mold growth.

    It was just one small area of carpet that had grown some toxic mold in it after a water leak. It had five kinds of toxic mold and one toxic bacteria, but none of them were the dreaded stachy. It wasn't even black. It was brown.

    I had actually been feeling better in some ways, because of the methylation supplements I had been taking the year or so before I moved. I was sleeping better and getting thinner. But in other ways I was going gradually downhill. My physical stamina was getting less and less.

    I had a comfortable, safe, quiet life. Sure, I could rarely leave my home, but I was secure. I was surrounded with my favorite things, my hobbies, my TV and books and computer. I knew all my neighbors and I liked my landlord. Sure, I felt exhausted and semi-paralyzed all the time, but I had learned to live within my envelope.

    There was nothing forcing me to move out of my home. It was just a decision I made. I decided I didn't want to spend the rest of my life that way, missing out on things like traveling and having a social life and having a career. I didn't want to increase my risk of dying at a younger age from cancer or heart problems. (which having CFS does to people)

    So I went down the path of figuring out if I could have mold poisoning. And it turned out I did.

    Since I began avoiding mycotoxins, it has been really good to feel less paralyzed, less in pain, and less exhausted.

  16. Rrrr

    Rrrr Member

    thanks khalyal and fore, for these posts!!

    - rivka