I also have confirmed TOXIC mold in my house

Discussion in 'Fibromyalgia Main Forum' started by desertlass, Jul 10, 2008.

  1. desertlass

    desertlass New Member

    Yes, another one.

    My lab test shows that it is the dreaded stachybotrus with its evil sidekick aspergillus. I hope I spelled those right.

    Anyway, I don't have the energy right now to go into this further, because I am in my lovely little toxic prison right now.

    I have been slowly working on a Reader's Digest Condensed Version of how this happened to me, and how it ties into my illness.

    But, I would much rather post details from a position of having more knowledge, so for now, I will just say--

    PLEASE look into this-- consider that your home may be sick as well.

  2. Rafiki

    Rafiki New Member


    I am swearing,
  3. CarolK

    CarolK New Member



    We just bought the product... have not used it yet.

  4. gapsych

    gapsych New Member

    I notice that you live in the midwest. I am sure that with all the rain we have had, there are more and more people with mold problems.

    It sounds like this has been a problem for a while?

    Is there someplace else you can stay until the mold problem is resolved?

    While I do not know the answers I want to let you know that I hope things work out for you.

    I know so many people who are having allergy problems right now and it can be miserable.

    But yours is serious so can not imagine the impact it is having on your health.

    Take care and keep us posted.

    [This Message was Edited on 07/10/2008]
  5. Forebearance

    Forebearance Member

    I am SO sorry that this happened to your house, Lisette.

    At least now you have a major clue about which kind of neurotoxins could be contributing to your CFS.

    I felt really devastated when I discovered toxic mold in my beloved apartment. But the funny thing is that now that I am living mycotoxin-free and feeling better, I'm not depressed! (at least, not yet!)

  6. desertlass

    desertlass New Member

    Is to say...

    Read Slay a Dragon's thread on mold. She is way ahead of me on the learning curve with all of this.

    And when it comes to bleach or any site that recommends that--

    respectfully, but, yet:

    NO, NO and NO!

    This is the difference between cleaning up something that is fall-out from a bomb hit and radiation from a bomb hit.

    The people who remove this don't want to go near it. The guy that is an independent lab that identified it doesn't want to go near it.

    His lab does not recommend ANY remediation companies. He does not refer people to anyone.

    His only job is to tell me what I am dealing with. My only job is to just tell people what I have experienced, and what I might be facing.

    This is very, very, very serious.

    This is not a mold that has always been around. He told me which molds are harmless and which are not.

    This is not an allergy.

    This is not the case of a scam. I have not had one person out to my house. The lab guy is not "in cahoots" with anyone.

    My dad as a retired independent insurance agent. He is going to be friendly to the idea of false claims and crooked attorneys. He is already feeling alarmed for me.

    What is new is not only the specific kind of mold this is, which has not "been around forever."

    Building methods and construction materials have changed too.

    Just food for further perplexity.

    As my teenager would say, "So... yeah."

  7. Slayadragon

    Slayadragon New Member

    The first test that I think everyone should take is called the Visual Contrast Sensitivity test.

    It looks for the presence of neurotoxins in the brain.

    It's a test you take on your computer, by looking at pictures and entering what you see.

    The test isn't totally accurate. It's possible that you might have a problem with mold (especially if you're hypersensitive to it like I am) and come up negative on the VCS test.

    If you come up positive, it could be caused by something else. Lyme or certain other biotoxins often are the causes, but sometimes it can even be a leak in a radiator.

    Regardless, it's definitely worth taking the test. It costs $10 and takes maybe 20 minutes to complete.

    Dr. Shoemaker (by far the leading authority on mold) has a panel of blood tests that looks at mold. Forebearance and arosenb10 (sp?) have had them done. Hopefully I will get them done next week.

    They're quite esoteric tests though, and getting a doctor to agree to run them and figure out how to get them run is a bit of a challenge. Hopefully soon they'll be readily available to everyone, since they're not even that expensive.

    Regardless, the VCS always is a good place to start.
  8. Slayadragon

    Slayadragon New Member

    Hi Jam,

    Dr. Shoemaker's website, www.biotoxin.info, lists information about the tests. It's unfortunately quite confusing, but a few doctors seem to be figuring it out.

    Here are some recent threads from the ProHealth board that deal with Dr. Shoemaker's test panel. Hopefully the links will work.

    Thus far, the only results that I've seen are from forebearance and arosenb10. redhummingbird just sent in blood for some of them. Hopefully I can get the blood drawn (and maybe the nasal swab done) this coming week.

    It would be really great if you could get them done too!

    What's your doctor's name?

    Best, Lisa








    [This Message was Edited on 07/12/2008]
    [This Message was Edited on 07/12/2008]
  9. Forebearance

    Forebearance Member

    Good luck, Jam! (all you folks named jam always make me hungry)

    I did as much research on the tests as I could. I printed stuff off Dr. Shoemaker's web site and the Lab Corp web site. My doctor's lab manager called Quest and checked where the various tests would be sent. So all my doctor had to do was write a prescription for the LabCorp tests. It was easy for her.

    Please hang in there, Lisette!

    It is incredibly hard. During the time I was packing and sorting my household, I kept complaining out loud to myself (or maybe to God), saying "This is HARD!" I whined to my heart's content, but I kept on packing.

  10. desertlass

    desertlass New Member

    Oh, I have so much to say.

    I am going to start talking about this topic and I'm not going to shut up until I get kicked off.

    But, my job is to remain true to myself, no matter what happens to me. Which means responding to it with my own character and personality strengths, and perhaps find some new strengths that I didn't know I had. I am fairly certain that all of my known weaknesses will point to other unknown weaknesses as well.

    So, everything that happens to one really is just a process of revealing what one's nature really is, apart from what we hope it is, or tell ouselves it is, based on what other people say or what we say.

    So, yes, I am DETERMINED to maintain my sense of humor, and I hope that I will be able to use my gift of telling stories through the written medium to entertain, beguile, disarm, warn and inform, and just generally try to be charming... so that I can hypnotize everyone into my way of thinking. ;~)

    Mary Poppins is one of my many favorite heros. Besides being "practically perfect in every way", she gave me wonderful bits of strategy for my own life.

    A spoonful of sugar helps the medicine go down. It doesn't have to be literal sugar or medicine. Just be nice to yourself as much as possible, and that will give you the daily courage to meet the big stuff. No need to make things harder. I think God tries to be nice to us in so many ways, but we say, "No thank you, I've got to be 'tough'."

    "In every job that must be done, there is an element of fun. You find the fun and SNAP! the job's a game."

    When I find the fun of mold or remediation, I will let you know.

    Talking with you fine folks about it will probably be the fun part.

    And maybe at the end of all this, I will do one of those "memoirs" that are all the rage now that seem to fit this formula:

    Person develops depression based on dissatisfaction with existential desires. Decides to embark on a quest and write about it. First a blog, or a journal, and then an edited book at the end.

    Book brings in money and then one feels compelled to invent more quests that become increasingly "gimmicky". But hey, it's a living...

    Quest could involve a year spent traveling to Italy, India and Indonesia.

    Quest could involve cooking every single recipe in Julia Child's first French cookbook with a year as a deadline.

    Quest could involve reading the entire Encyclodpaedia Brittanica in a year.

    Quest could be to live according to ancient Hebrew law for a year.

    Quest could be to live "off the grid" in the U.S. and discover that keeping goats and chickens safe from foxes is not easy.

    Wouldn't it be so GREAT to have that kind of freedom and choice!

    All of us here have had our quests slammed down in front of us while we were on one of our own design.

    My quest is for health and to find a safe home for me and my kids could seem as mundane as watching an ant crawl aound or it could seem as epic as Lord of the Rings.

    Every eye-opening experience is going to contain elements of both. As they say, "from the sublime to the ridiculous".

    But I could never write about my experience in a medically sound, or thoroughly researched, or hair-raisingly adventurous way, which was been done so well by others who have gone before me.

    I will be talking about this, and I hope that in the process, mold, of all things, will be of assistance to me in helping me to find my voice, and maybe even increase its range.

    Because anything written on here becomes the property of Pro-health, I'm considering just starting my own personal blog.

    Because what the world _really_ needs is another blog. But I consider it a matter of great restraint that I have a writing degree, but yet, do not have a blog!

    Mostly what I will be doing is to add to Lisa and Forebearance's threads with any snippets of info I might run across.

    As I said before, they are much further ahead of me in the process.

    I will add my own details.

    Otherwise, the topics on this board get so scattered. It's like throwing one's ideas up to the wind and seeing where they land and if they take root at all.

    At this point, I need to cultivate this topic a little more carefully, so that I don't broadcast misinformation, which I'm sure I'm full of.

    If anyone is interested, I'll make sure you know where to find me.

    On here, drop by Slay a Dragon's lair. There are some "warriors" there, but there are also just little hobbits like me, too.

    Freedom To and Freedom From!
  11. Forebearance

    Forebearance Member

    That was very inspirational, Lisette!

    I can see you writing a best-selling book: "Eat, Pray, Detox".

    Just think of the market there will be for it, with all the hurricane and flood survivors in this country!

    Hey, Jammy, here are the names of the tests I had done through Quest:

    I did these tests through LabCorp because Dr. Shoemaker says you have to:
    HLA DR by PCR

    They are two of the most important tests, so I wanted them whether insurance covered them or not. It turned out that my insurance covered LabCorp just fine.

    Go to this web page: http://www.biotoxin.info/Lab_Tests
    Download the Lab Order Sheet.

    I typed up a little table for my doctor with the tests I wanted, the lab they should go to, the Specimen requirement, and the Code number, all from that chart. My doctor gave the table to her lab manager, and the lab manager figured it out.

    Instead of doing that, you could just print out the whole Lab Order Sheet and then mark the tests that you want on it. I was trying to not confuse my doctor or her lab person. So that's why I showed them only the tests I wanted.

    The reason the lab manager called Quest was to find out if they were going to send the tests to the places Dr. Shoemaker specified in the appendix of Mold Warriors. It seems that all Quest labs in the US send these tests to the same places, and the places seem to be okay, so your doctor doesn't have to call.

    I really made my doc's lab manager work hard! lol She has forgiven me by now, though.

    I hope that helps!

    [This Message was Edited on 07/14/2008]
  12. Forebearance

    Forebearance Member

    You're so welcome!

  13. desertlass

    desertlass New Member

    I don't know if I had mentioned to you guys before, but Rich Van K was actually the one who recommended the Shoemaker website and the Visual test on a thread.

    Someone wasn't responding at all to the Methylation stuff, and so Rich pointed us in that direction.

    The thread sort of got derailed about Dr. Shoemaker's personality and so forth.

    Anyway, I took the first of those tests in the Spring of '07 and it came out pretty poorly.

    The difficult thing is that the brightness of a computer screen can change even while one is on it. My husband says it has to do with bandwidth issues, what the CPU is doing, and so forth.

    The results will be different from computer to computer, but also with the same computer, as well. If you have an "activity monitor" that is viewable, you can see how sometimes it's working hard and everything sort of "greys" a little bit. Other times it's quite low and the computer has more energy for lighting up the screen and filling out all the pixels, and so forth.

    One time I asked him, is it my imagination that sometimes my screen gets darker and lighter and fuzzier and crisper without me adjusting it in any way? This was after I had already taken that test.

    So, I just don't know. It would seem like having the actual cards as a basis would be more accurate, so who has access to those? I've only seen these discussed when it comes to things like glaucoma and hypertension. And it's really hard to add another doctor on the list.

    However, Rich also recommended getting checked for something to do with they eyes by an opthamologist-- papillomas-- is not the right word.

    Does anyone rememeber that? It is tied into the "brain swelling" that so many of us on here feel. Some might feel it as a "brain compressing feeling". It just doesn't feel like the headache you hear about or are used to.

    However, if one does _really_ badly on the online test, as I did, that would suggest to me that computer screen variances or not, that this should be looked into.

    If one does somewhat badly this should be looked into.

    If someone has no problem whatsoever, I don't know that that means, but hey, might as well look into it.


  14. desertlass

    desertlass New Member

    I always forget to open another window so that I can see all of the previous posts.

    I almost forgot to answer your question about the Atlas Profilax.

    I should report on that and stick to just that topic in general.

    But, in a weird way, I can now see that getting that done was part of being led to staying with my mold hunt.

    But to answer your inquiry right now, really quick.

    It does seem as though my Atlas is now permanently "fixed". What that means for me, two months later is that I have a lot less tension in my neck, the incredibly tight area right where the Atlas meets the Occiputal is a hundred times better.

    I can no longer get it to "crack", and I no longer feel like I'm always craning my neck around trying to get it to feel comfortable, rubbing it, etc.

    So, the treatment did exactly what it said it would do, did not cause me any difficulty, and seems to have fixed a stability problem.

    As far as long term results, I have no idea, yet. My CFS/FM are no better. But to not have so much neck pain-- wow.

    The price itself is totally worth it. It's the dumb travel expenses!

    But getting away from my house and all my stuff-- that's what was the most incredible gift of anything.

    "One Less River to Cross",

  15. Forebearance

    Forebearance Member

    Wow, Lisette, you were a real pioneer in this toxic mold stuff. Back in the spring of 07, I wasn't thinking at all that it could apply to me.

  16. PVLady

    PVLady New Member

    I actually did have my home tested and it came up fine. I am sorry to hear you have the bad mold. I am wondering what the remedy is.. with regular mold it seems bleach water takes care of it but I am not sure when it is in your drywall.

    Sometimes people have slow water leaks that cause problems.
  17. desertlass

    desertlass New Member

    I am glad that you looked into the possibilty of mold. Since I don't know what all was involved when you say "tested", I can't really say if that means that your house is okay. I hope so!

    As far as bleach goes, I'm beginning to think that it doesn't even kill regular "mildew" in the shower type of molds. In a previous house I battled with a mildewy shower. I just couldn't understand why it kept coming back (maybe it was behind the tile walls, but that is unknown to me).

    However, sometimes we scrub off the worst of it, and the bleach is simply "whitening" the stuff that is left in the grout cracks, temporarily. I heard this from someone who is no expert on mold. I don't know if that is true or not, but I can imagine it.

    Anything that is so tough that it can eat mostly just dry stuff and not need a whole lot of water is like a cactus-- it is going to be a very mean and thorny problem and will be able to hang on through a lot of attempts to kill it.

    I think it is better to call out a mold "wrangler" to deal with this than to think that my sick body should go anywhere near it. Finding a good one is going to be as hard as finding a real cowboy. I hope I have.

    The remediation might begin next week. I am nervous about this, but am trying not to dwell on it.

    I have been feeling fairly well lately. We have been having an unusual monsoon season here. They are not following their typical pattern. Usually I am in a horrible flare during our wet season.

    I have ideas about this, but I will wait and see.

    Now that I have finally found the stuff, and it was hidden for a while, I have started to grieve. It is like discovering that your house has cancer. You don't know how bad it's going to be until they "go in".

    I am hoping for the best, preparing for the worst.

    The desert has been just beautiful this last week. Mostly I'm spending my time just trying to enjoy it. It won't last, because August is unpredictable, and September is BEASTLY here.

    As far as pioneers go, some of us set out earlier than others, but it's one thing to be on horseback and it's another to be part of a wagon train full of families.

    I'm sort of like the second one. The needs of the many to be considered, more distractions, and the whole thing just takes so darned long.

    I think that because I had just come off of the guai protocol for FM, I was not willing to get too involved in another theory involving supps-- so when Rich's MCB theory was being discussed in late '06/early '07, I was interested, but just not ready.

    Therefore, I had more time to read Erik's posts, and I sort of followed them around. I don't know why. I guess that will be part of me "looking back" some day.

    I started hunting, but he was not exactly a fount of "how to find it" information. sigh.

    Owning a home with this situation is tough, because of the lack of insurance issue. But that makes "hunting" a little easier. And yet when one is so sick one can't move out of the bed, then you have to rely on other people and how does one get someone who is not sick to wrap their minds around this issue?

    It's like trying to argue someone into believing in the Supernatural, os something. It just can't be done.

    Being in an apartment takes a bigger leap, because you can't go hunting in other people's apartments, and if your landlord is not approachable, it's more of a leap of faith to just move, and then not know where to go that might have the same problem.

    I have not known where to go... I kept saying to Erik, "I live in the desert already... where do I go? I see now why he couldn't tell me. Well, it would have been nice if he had told me _why_ he couldn't tell me, instead of just leaving that question hanging... but because I don't get "hits" right away, I don't have a sense of it.

    Chemical hits, yes. That is instantaneous for me. Target is not as bad as Wal-Mart. I can get through a Target, but Wal-Mart makes me feel like I am drugged and on fire. They are problematic for broader reasons, so no love lost for me, there.

    Well, back to the Wagon Train. Those of you who may have gotten a late start but are further ahead on horseback have given me hope. Except I'm not sure if I'll ever be able to be a "settler". I suppose that's not all bad. ;)


    P.S. Jam, I will try to answer more of your Atlas questions on the Atlas thread, as I can. If you are near enough to Michael Hane that traveling is not an issue, I would just do it. Your husband can be in the room with you, and Michael might give him a discount if he seems interested in trying it after you. I can't say for sure. He's an interesting person to meet.