MOLD-- please help!!!!

Discussion in 'Fibromyalgia Main Forum' started by babyk902, Sep 6, 2010.

  1. babyk902

    babyk902 New Member

    I haven't been on this board in a long time, as I was doing VERY well (was about 85% recovered). Recently my office has had major leak problems, where the carpet is SOAKING wet by my desk and another lady's desk. I'm in an office where there is no ventilation, or windows that can be opened (it's similar to a warehouse). This happened about two or three different times, and every time it did happen, they just let the carpet air-dry, and did atleast try to put the de-humidifier on at some point (although I'm sure it didn't do anything).

    The first time it happened was around May, and I remember that day i had to go home before I actually threw up (whether it was from the mold, i'm not sure). Ever since then, I have been feeling SO ill, symptoms that I have never ever experienced, to the point where i cannot even function. I've had major dizzy spells, migraines (my head feels like it is pulsing), blurry vision, feel like I'm in a dream world, extreme fatigue, confusion, memory loss, etc. I finally put two and two together and realized that it MUST be from the mold. I've gone to two doctors since then (both are kinesiologists and naturopaths) and they've both put me on homeopathic meds for mold/aspergillus and even EBV (which I haven't had an issue with in years).

    I'm SO upset, because i was doing so well to the point where I stopped making doctor's appointments.. until this happened. I LOVE my job and feel like I finally found where I want to be career-wise, but i just don't know what to do anymore, I'm in such a bad situation. I've been drinking milk thistle (to help support my liver and detoxify), a multi-vitamin & enzyme spray (about 2 times a day) and have been taking Grapefruit seed Extract every day (anti-fungal, about 10 drops 2 or 3x a day), but feel like nothing is helping! I still feel SO out of it everyday, I feel like I have been slurring my words and cannot even think straight sometimes. I've been avoiding sugar and wheat as much as possible, but nothing seems to be changing, even though I've been on the meds.

    I brought this up to my boss last week, and they did recently move my desk into another room (there's a front office and a back office), had a carpet cleaning service come in and clean the carpets, and they are trying to re-locate the office, but who knows when that will be. I've taken off a few days because I just couldn't function and was hysterical crying because I was scared to go to the office. I'm a complete wreck, and just don't know what to do anymore because these symptoms won't go away. I want to see another doctor, because I feel like there may be something seriously wrong with me.

    The problem is that because we had the carpets cleaned, my boss thinks that I should be feeling better since the "mold is gone". The back and front room are connected, so the air circulates between the two.

    Does anyone have ANY suggestions on any of this, or can help me with any kind of feedback? Is there anything else i can take that may help reduce some of these symptoms? Thank you so much for your help, and sorry this is so long! Just don't know what to do anymore..
    [This Message was Edited on 09/06/2010]
  2. caroleye

    caroleye New Member

    We invested in one. Just cleaning a carpet will not "kill" mold. Problem is you have to stay out of the area while it runs & then people can't come back in for some amount of time.

    But it works. Just costs $ & time.

    If you had a mold expert dx the mold; then you could go after the employer for putting your health in danger.

    Good luck!!
  3. Forebearance

    Forebearance Member

    Hi babyk,

    I'm so sorry this happened to you.

    It looks to me like people who have CFS are really easy to poison. So if toxic mold grew in your carpet at work, it could explain your new symptoms very well.

    A lot of us people with CFS have a genetic susceptibility to mold toxins or other kinds of biological neurotoxins. It means that our acquired immune systems have a blind spot and can't "see" the toxins, so they have trouble eliminating them. You can read about it in Dr. Shoemaker's book "Mold Warriors". Or you can check out his website at

    The lab test for the genetic susceptibility is called an HLA-DR test. You can get it through LabCorp and it costs around $100.

    So even though carpet cleaning may work fine for healthy people, for people with CFS it may not be good enough.

    Toxic molds create clouds of spores that deposit toxins onto every surface, and those toxins are very difficult to remove. You can remove the spores, sure, but not the toxins.

    I don't want to alarm you, but I wouldn't be able to even go in a building where what you describe had happened. There is no way I could work there. So if I were in your situation, I would have to quit immediately.

    I think the first thing Dr. Shoemaker gives his mold posioning patients is Cholestyramine. It's a prescription drug. You can try some over the counter things that do the same job, but are milder and less powerful. What they do is soak up mold toxins that circulate in the bile and escort them out of the body. Phytosterols are one thing. Soluble fiber is even gentler.

    Good luck with everything. It sounds like a really tough situation to be in.
  4. kat211

    kat211 New Member

    Mold illness can be very hard to diagnose and prove. Toxic mold, along with a couple other varieties were found in my home. I have had a sinus infection, severe allergy symptoms, massive weight gain, and a variety of other symptoms that only started after I moved into my home 13 months ago. I have been to every specialist known to exist who all agree that something is wrong with me, yet I still do not have a diagnosis or treatment plan. I don't even have any non-food allergies! (I am currently suing the people I bought the house from for fraud.)

    The fact that this is in your workplace could be a big problem for your employer, if, and only if, you can prove that there is in fact mold and that that specific mold is what is causing your new symptoms.

    I have fans with ionic cleaners all over my house. I keep windows open at all times. I also have 5 other, non-fan ionic air cleaners running at all times. The portion of the house that we are currently confined to is approx 800 sq ft and I have 5 air cleaners and 4 ionic fans. I must do a deep cleaning of my home every week w/smaller area cleanings daily or I feel worse. I also have to clean the fans and air filters 2xs a week. I feel like I am constantly cleaning, ok, well I am. I have found that rinsing my sinuses out 2xs a day with neil med solution makes a huge difference in not only my allergy symptoms, but helps clear my thinking and helps w/headaches.

    I am very sorry you are having to go through this. Go to an ENT and have a culture of your sinuses done. This can tell if there is mold growing in your nose and what type it is, which can be very helpful in convincing your boss that something is wrong. get an air filter for your work area. I would also recommend using a sinus rinse to clean out anything that may be depositing in there from your work.

    The only way to get rid of mold is a professional remediation, which is costly and time consuming.

    I'm sorry I can't be more helpful.
  5. hi all, have to totally remove mold from your living space,in order to get well again.

    we still have mould living in the cavities of this old council house.(its a rented property)and we do plan on moving out of here, if my condition flares up badly this winter,like it has in the past.

    one day i came into my front room,(this is ,i think ,2 years ago).i just couldnt go in the room for some reason.

    my chest was on fire,and the most horrid smell hit me in the face.

    to cut a long story short,in the winter the mold from the cavities had crept under the skirting board.

    silently grown under my carpet,and all hell broke loose with my fibro,ME/CFS and my asthma.i just shut down, and was in bed for was horrible.

    we threw the carpet away on the tip.bought floor boardings.

    i was troubled a bit at first with the smell of the floor boardings,but nothing major.and since we had those,ive been well in myself,and no mold has appeared as yet,thank goodness.

    we do get mold growing in the bedrooms and bathroom,this is on the window sill sealant that goes around the insides of the frame.i just hate mold FULL STOP.,

    its horrible stuff,and yes it makes us who suffer from fibro,ME/CFS,asthma very,very ill.

    im watching your post with interest.take care sweetheart.

    love fran.

  6. Lono83

    Lono83 New Member

    1. There are a number of abnormal biomarkers that Dr. Shoemaker finds are associated with mold illness. He tests many different things, but I'd say the most important are: vasoactive intestinal peptide (VIP), melanocyte stimulating hormone (MSH), C4a and TGF-Beta1. If you run these and they are normal, then at the present time it's probably not a primary problem.

    2. I'm not a lawyer, but from what I've heard it's very difficult to win legal cases related to mold. . .
  7. babyk902

    babyk902 New Member

    Thank you ALL for responding -- i appreciate your feedback so much, and I'm sorry to hear that some of you have gone through similar situations that I have. I'm just so frustrated because i was doing SO well, and mainly everyone in my office has been OK (although the mold was directly under MY desk) with the exception of one girl who keeps getting migraines and sinus infections, and feels "off balance" (i'm sure this is related to mold somehow), and another girl keeps getting migraines.

    Even though I moved up to the front office on Friday i feel like it's made absolutely no difference, because whatever is in my system i'm having a hard time getting rid of. Yesterday there was a really musty smell from the air conditioning but i have no way of proving that it's mold.

    This is what my protocol has been for the past couple weeks:
    NO sugar (including fruit), NO wheat, NO yeast, etc.
    Avoiding alcohol (I already feel like i'm on something lol)
    Taking grapefruit seed extract 3x a day (10 drops at a time)
    Drinking fresh coconut water (which tastes amazing, atleast once a day)
    Homeopathic remedies (one for EBV, Fungus/Mold, and Liver detox -- given by two separate doctors)
    Multivitamin/Enzyme spray (Cellfood-- not sure if it's doing anything at all, 2 or 3x a day)
    Drinking atleast 1 or 2 cups of detox tea
    Eating yogurt with active cultures daily (plain with no sugar)
    Just started taking wheatgrass shots on Monday (1 or 2 a day)
    Eating lots of veggies/greens.

    I don't know what else to do! I feel like NOTHING is helping, and after being in the office yesterday (was off on Monday) i feel even worse. My doctor's office is closed today, so I think I may be going to the ER to get checked out, I just feel like something is REALLY wrong.. and I'm making myself nervous when I'm driving. Whether it be the mold, or something else, I'm just really worried, and am miserable because I LOVE my job, and feel like this never would have happened if I hadn't been working for this company (I just started with them in March).

    The problem is that "they" don't understand (Just like you said Caladonia) and they're already in the process of moving their office, so they aren't going to spend top dollar to fix things now, when a) they don't see a problem since they got the carpets fixed and b) they're moving soon anyway. I just feel like every day I'm there is another day I will feel worse, and not get better at all. If I were to call OSHA they would clearly know it was me, and I'm not sure if im prepared to go down that road, and deal with the consequences of everyone knowing that. I just don't know how to get them to understand, and how to get myself to feel better without having to take a lot of time off?

    :( will hopefully have a better update later

    [This Message was Edited on 09/08/2010]
  8. slasher

    slasher New Member

    Others think that people who complain with MCS and such are "off."

    It's a horrible situation you are in.

    Unfortunately, you could have to just leave there permanently.

    Your health is too important.

    I've been through this. Avoidance is the cure.
  9. richvank

    richvank New Member

    Hi, babyk902.

    I'm really sorry about what you are going through. I've been working on CFS for almost 15 years now, and I have heard many stories about toxic molds from people who are sensitive to developing mold illness. Your story is very familiar. If you want to find out about the experiences of others, you might consider joining the Yahoo health group called "sickbuildings."
    Other resources would be Dr. Shoemaker's book Mold Warriors. He's also about to come out with a new book that will be called Surviving Mold. He also has websites at biotoxininfo dot com and chronicneurotoxins dot com.

    I have to echo what others have already posted. That is, if you are sensitive to mold toxins, you must avoid exposure to them. It is very difficult to completely clean up a building that has this kind of contamination. There are people who have become extremely ill from continued exposure to mold toxins.

    Best regards,

  10. Slayadragon

    Slayadragon New Member

    A simple, easy-to-read book about toxic mold is "Surviving Toxic Black Mold Syndrome" by Dr. Mary Beth Short-Ray.

    None of the remedies that you are taking has anything to do with protecting you from this poisoning. No other remedies have anything to do with protecting you from this poison either. Don't even waste your money. Not even one penny. You will need every penny later on, to cope with the aftereffects of this exposure.

    I strongly suggest getting out immediately. The longer you're exposed to this stuff, the more impossible it will be for you to do ANY job, ever.

    Coming back from this once you're sick is very, very, very hard.

    Basically impossible, really.

    Best, Lisa

    [This Message was Edited on 09/10/2010]
    [This Message was Edited on 09/10/2010]
  11. babyk902

    babyk902 New Member

    Thank you all for your feedback, it means a LOT. I have been looking a lot of different books and articles on mold and have learned alot, but still just feel like I'm getting nowhere.

    I FINALLY quit my job. I had no choice. My hair has been falling out like CRAZY, and i feel like i'm going bald, the dizziness and the migraines wouldn't go away so I just felt like I had no other choice. I put my two weeks in, and told my boss that I just cannot work in those conditions, and if they want me to work for the company I have to work from home for now until I find a new job (which is what I've been doing the past two weeks).

    I'm just a little upset because I don't feel like i'm getting better AT ALL. I've tried to eat healthy, have avoided ALL sugars, and all grains/carbs (with the exception of brown rice) and have been trying to incorporate as many vegetables as possible, but not feeling ANY better. How is this possible? I'm just scared that this feeling will not go away, and I'm absolutely miserable :( I've been trying to stay positive but I wake up and want to cry because this brain fog is just SO debiliating, I cannot think or see straight. I just feel like I'm 90 years old and cannot remember what I did an hour ago, it's scary.

    This is my regimen now:
    -I basically bought Vitamin C yesterday and am taking it 4x a day (2,300mg each) it also has magnesium & calcium in it also.
    -Drinking milk thistle tea
    -avoiding ALL fruits except for fresh coconuts (anti-fungal)
    -taking fish oil (hope it will help with my memory and brain fog)
    -Cellfood enzyme therapy (with oxygen)
    -Detox baths a couple times a week (with baking soda & magnesium)
    -I stopped with the wheatgrass, I just felt like it didn't help very much and was getting very unmotivated.. I know i should probably keep up with it.

    I've also been taking a protein shake which my doctor gave me, which in the past used to ALWAYS make me feel better - it has a veggie blend, pea & brown rice protein, but it has sucralose in it....and i'm not sure if that's a bad thing to take or not when I'm dealing with this right now, because I've had one or two everyday and I am concerned it may be making it worse.. it just used to help with my fatigue SO much.

    Are there any other suggestions anyone may know of? Or anything else that may help me? I'm feeling so discouraged now... it's affecting my social life, my relationship with my boyfriend, and even my family because I'm just depressed all the time, and cannot even hold a conversation.

    Please help. Thanks so much.
  12. Slayadragon

    Slayadragon New Member

    It may be that the mold that you dragged home from work on your hair and clothes has contaminated your house, and therefore is still making you sick.

    I would suggest that you wash or replace everything you can.

    Start with the bedding. Buy new sheets and (especially) pillowcases. If there are things on your bed that can't be washed (e.g. plush pillows), throw them out.

    Wash all the clothes that you wore to work in the washer. (Even if you didn't wear them to work, still wash them.) If there are clothes that can't be washed (and especially if you wore them to work), throw them out.

    Get rid of any papers or other non-washable items that were exposed to your workplace.

    Wipe off all the surfaces in your bedroom, especially ones near your bed, with water. Vacuum the carpets well. If curtains, wash them. Air out the room.

    The key is to imagine that you have brought home lots of "dust" home from your workplace. The goal is to get rid of EVERY speck.

    This would be a good time to go on vacation, just to see if it makes you feel better. If you do, buy new clothes.

    Best, Lisa
    [This Message was Edited on 10/19/2010]
  13. babyk902

    babyk902 New Member

    Slayadragon thank you for your response -- you might be right, and that's scary bc ull never know if you've completely eliminated all of it or not since you cant see it!

    Does anyone have any other suggestions? I'm really losing my mind here. I'm 24 and this is the worst thing that I've ever had to deal with, especially bc i was doing soooo much better with my CFS! :(

    Would love to hear some other suggestions (dietary, supplements, anything). I don't know what else to do..
  14. kat0465

    kat0465 New Member

    thank God your out of the Building, thats the first step on a long road im afraid.
    My daughter worked in a Mold infested Building for about 2 years. after the second hurricane it got really bad.
    i think she has a milder case of cfids,although she hasent been diagnosed. anyways when she finally quit the Job, she was so sick from the mold, hair falling out, sinus infections, migrains, nausea she had it all.

    it probably took her a good 6 months for the symptoms to get better and for her hair to stop falling out. it's just now almost like her pre mold condition.and its been over a year.

    your doing everything right, it's just gonna take some time.someone said you might wanna go to an ent to get a swab and see if your sinuses are clear.
    we all know how bad your feeling, it's a hard road to walk thats for sure. Just hang in there & work on getting better.

  15. babyk902

    babyk902 New Member

    That's scary, but I know once you have these issues they don't go away overnight, and that's my main concern.. I'm trying to get another job, bc I need money to pay my bills, but i just don't feel like I can even function well enough to handle it?? did your daughter take any medication, or eat differently in order to feel better? My hair is falling out non-stop, I just feel like if i lost anymore i'm gonna have none left!

    What's weird is that my ENT said that they don't do that, and that would be unnecessary, but maybe I need to look into trying another ENT.

    Thanks so much for ur help!
  16. victoria

    victoria New Member

    someone else mentioned cholestyramine... it is a prescription, it worked well for my son as it detoxes your brain basically, and it has done this for many others. You might want to look at Shoemaker's site and print off the info about it to show your doctor.

    hope this helps, and that you find more than one things that helps!

    Edited to add:
    Shoemaker's info:

    Cheney's advice

    Questran=Cholestyramine[This Message was Edited on 10/21/2010]
  17. kat211

    kat211 New Member

    apply for unemployment right away. I know you quit, however, you were forced to do so due to the work conditions threatening your health. You have nothing to loose by applying.

    What does your ENT say they don't do? Mine has been great, expensive as all get out, but great.
  18. babyk902

    babyk902 New Member

    Victoria -- i have heard about Cholestyramine before, do you know how you would get a prescription, and what doctor would you show it to?? (your primary physician, ENT, etc?)
    I would LOVE to try that.

    Kat211 -- my ENT basically said they don't do nose culture, and they have never done that. but i've heard about plenty of people getting that done before so I was confused.
  19. kat211

    kat211 New Member

    My sinus culture showed positive for one of the molds that has been found in my home. I am currently on an anti-fungal sinus wash. I don'`t think it is working for me, but then again I am still living in my house and here most of the time. My son's didn't show up positive, but he is having another one on monday b/c he has gotten worse since we have been closing the windows with the colder weather.

    Find another ENT! I have been suffering from mold illness for more then a year now b/c my old PCP was a jerk and kept telling me my symptoms were from getting older and allergies. Well, I'm in my 30's and I am only allergic to dairy and latex. Stand up for yourself now b/f you get worse.
  20. victoria

    victoria New Member

    I would think that if you print off the info and references and let your doctor read it, even if s/he is a GP, that they might rX it for you. If not, maybe another doctor... not sure what type(s) of doctor(s) you are seeing. In any case, I'd print off the research references and articles.

    You know, I've been to a lot of ENTs, and not one has done a culture. Pretty sad. It's very hard to find doctors who do any type of culturing, quite honestly. In my lifetime, I've only run into 2. One was a urologist, one was a pediatrician. I honestly think most are daunted by it and/or do not want to take the time/effort.

    [This Message was Edited on 10/22/2010]
  21. babyk902

    babyk902 New Member

    kat thank you! I'm going to find another ENT, I guess when I call to make an appt I should ask if they do the culture before hand -- there has to be one in my area.

    What kind of symptoms are you dealing with, just curious? and is there anything else that has been helping you? CFS was already hard, but dealing with mold is just the WORST. i've never felt this bad, no in the past 5 years that's for sure. :(

    Victoria -- I know what you're saying, and it's been hard for me as well. I KNOW i feel this way from the mold, and I'm not sure what it would really do for me anyway, unless they had some sort of treatment that they could recommend?? i just want to get better. that's the bottom line, and I'm having such a hard time trying to feel better. Every day is just so disappointing for me, because I just feel like I am not making progress at all... and I just wish this never happened.
    [This Message was Edited on 10/23/2010]