Is mold avoidance the only option?

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

  1. lostleaf

    lostleaf Member

    Hi again-

    I've posted a few questions - thanks for bearing with me. In the two weeks since I have been diagnosed, I have felt like I have more questions than a roomful of 4 year olds.

    My doc, who diagnosed me two weeks ago, presented complete mold avoidance as my only option. Procuring a new home and all new possessions isn't a very viable solution for most people because of the cost. I haven't felt like I had a choice, though.

    But when I read here, it seems like not everyone does complete mold avoidance. Are there other options for getting and staying healthy? (My doc started me on the Shoemaker Protocol, but still says I need to move and replace my stuff.)

    In case anyone wonders, my official diagnosis is Chronic Inflammatory Response Syndrome (CIRS). Also, I rent, so I am grateful I do not have to remediate a home. I am so sorry for all you who have had to handle that.

    Thanks,
    Kim in Tucson
  2. bobbycat

    bobbycat New Member

    We had a leak in a bathroom we never used and this is a relatively new home. But since we never use that bathroom it was not caught soon. When I caught it I saw the mold up the wall so I called our insurance company and they sent a company in to assess the damage and then start the clean up. They did not use proper procedure in the removal of the mold and when they tore up the bathroom floor and drywall then went and removed it and the drywall in the bathroom and bedroom upstairs and downstairs plus walked through our whole house dragging carpet material, flooring and drywall with no protective covering on their feet or clothes they exposed our 2,800 sq. ft. home to toxic mold. We brought in a CIH which is a mold expert and our house failed that was the beginning of our nightmare with the insurance company and my many doctor appointments. I had to move into a hotel. My husband, my mother refused to leave the house and stayed with our animals but it did not seem to have the same impact on them as it did me me. It took me fighting with the insurance company due to the fact we are not insured for mold which most people do not have mold coverage but since they hired these people and did not give us a choice we and the company that did it refused to do the cleanup I went after the insurance company as I said they hired them as they gave us no choice so it was their responsibility. So overall it took almost a year from begging to end to get them to do what they were suppose to do in the first place. It took five CIH test two clean ups as the first one failed so I had to fight the insurance company again to pay for the second one and every time there had to be a test again and they sent in their own CIH one time after the first cleanup to test the air. I was getting dizzy, bloody noses, my temperature would go up over 100 degrees every time I moved around and I was in and out of hotels. The company's I hired for the clean up as I had a different one then the first one to do the second clean up came in here and it took about two weeks and then it finally passed. All of our belongings remained in the home and I was able to return and my symptoms finally cleared up but not before going through a lot of testing an a doctor diagnosing me with an environmental illness. After I returned I did have to deal with a chemical smell but it did go away after awhile. Mold is very dangerous and very toxic and I had three CIH and they gave me all kinds of information plus I looked it up on the net. Plus the doctors I were sent to that tested me. I would not suggest anyone live in a home that contains mold at any level. I don't know where you live but if you can afford it I would hire a CIH to have it tested it is worth it for anyone to do so. I am not on here much but check in every now and then. Mold can create havoc with your health. My doctors and the CIH told me I needed to leave the house as it is especially bad for people with my medical problems. My doctors told me it may clear up if I got I moved out but it would take awhile and it did but the longer you live in those conditions the more damaging it will be. Take your doctor seriously please. I will try to check in a little more often to see if you post. Talk to a mold cleanup specialist about your stuff and look it up on the net. It depends on what kind of stuff you have but all stuff can be cleaned but it depends on how it is done. It is prudent to talk to a specialist especially when it comes to large items such as coaches, beds, and so forth as if you are living in a moldy home there are certain procedures. One is using a hepa vacuum but this needs to be done after you leave the moldy home but prior to entering the new home. Hope this helps.
  3. bobbycat

    bobbycat New Member

    We had a leak in a bathroom we never used and this is a relatively new home. But since we never use that bathroom it was not caught soon. When I caught it I saw the mold up the wall so I called our insurance company and they sent a company in to assess the damage and then start the clean up. They did not use proper procedure in the removal of the mold and when they tore up the bathroom floor and drywall then went and removed it and the drywall in the bathroom and bedroom upstairs and downstairs plus walked through our whole house dragging carpet material, flooring and drywall with no protective covering on their feet or clothes they exposed our 2,800 sq. ft. home to toxic mold. We brought in a CIH which is a mold expert and our house failed that was the beginning of our nightmare with the insurance company and my many doctor appointments. I had to move into a hotel. My husband, my mother refused to leave the house and stayed with our animals but it did not seem to have the same impact on them as it did me me. It took me fighting with the insurance company due to the fact we are not insured for mold which most people do not have mold coverage but since they hired these people and did not give us a choice we and the company that did it refused to do the cleanup I went after the insurance company as I said they hired them as they gave us no choice so it was their responsibility. So overall it took almost a year from begging to end to get them to do what they were suppose to do in the first place. It took five CIH test two clean ups as the first one failed so I had to fight the insurance company again to pay for the second one and every time there had to be a test again and they sent in their own CIH one time after the first cleanup to test the air. I was getting dizzy, bloody noses, my temperature would go up over 100 degrees every time I moved around and I was in and out of hotels. The company's I hired for the clean up as I had a different one then the first one to do the second clean up came in here and it took about two weeks and then it finally passed. All of our belongings remained in the home and I was able to return and my symptoms finally cleared up but not before going through a lot of testing an a doctor diagnosing me with an environmental illness. After I returned I did have to deal with a chemical smell but it did go away after awhile. Mold is very dangerous and very toxic and I had three CIH and they gave me all kinds of information plus I looked it up on the net. Plus the doctors I were sent to that tested me. I would not suggest anyone live in a home that contains mold at any level. I don't know where you live but if you can afford it I would hire a CIH to have it tested it is worth it for anyone to do so. I am not on here much but check in every now and then. Mold can create havoc with your health. My doctors and the CIH told me I needed to leave the house as it is especially bad for people with my medical problems. My doctors told me it may clear up if I got I moved out but it would take awhile and it did but the longer you live in those conditions the more damaging it will be. Take your doctor seriously please. I will try to check in a little more often to see if you post. Talk to a mold cleanup specialist about your stuff and look it up on the net. It depends on what kind of stuff you have but all stuff can be cleaned but it depends on how it is done. It is prudent to talk to a specialist especially when it comes to large items such as coaches, beds, and so forth as if you are living in a moldy home there are certain procedures. One is using a hepa vacuum but this needs to be done after you leave the moldy home but prior to entering the new home. Hope this helps.
  4. IanH

    IanH Active Member

    My daughter had the same problem - very severe.
    We also have three patients in our clinic who suffer from severe mold sensitivity.

    My daughter had to buy a new house and rent the old one out after having it cleaned. Gave up much of the furniture too.
    However things which are plastic, metal, glass or ceramic can just be cleaned (ideally with 20% bleach + water and placed in the sun. Bleach kills almost 100% mold and spores. Try to have someone else do the cleaning for you

    The computer can be cleaned with propyl alcohol but don't you do it yourself. All the fan blades will need to be cleaned and the box vacuum cleaned.

    Do not use mold cleaners or preventers in the future as these may trigger MCS.

    In your next house try to get an air purifier or a good quality dehumidifier and run them all the time in your main room.

    To assist biochemically you could take the following:
    vitamin D3 3000iu - 5000iu daily (very important as it upregulates cathelicidin and defensin natural antibiotics which reduces your response to mold). Vitamin D also regulates pulmonary T cell response to mold which helps to reduce symptoms.
    magnesium 400mg daily (as citrate or glycinate)
    zinc 25 mg (as a chelate or picolinate)
    vitamin K2 (400-1000 mcg) this regulates vitamin D and is also antibiotic

    I will let you know of other antimold herbals that we have tested later but I am home at the moment. Others on this site may have some ideas too.

    [This Message was Edited on 04/15/2013]
  5. luigi21

    luigi21 Member

    Bleach wont kill mould on porous material, the chlorine prevents it penetrating. I had it growing on my bedroom wall and wardrobe and over my shoes. I threw my trainers away. However, i treated my shoes and boots with a mould spray which is an anti fungal, i then treated them with tea tree oil and bicarbonate of soda. Theyve been ok. My room was given a mould wash and mould preventer. Its been ok, think i caught it in time. Mould is a problem in the uk, what with the damp and central heating and some of the cold buildings where the pointing on the brick work has gone.

    One of my friends had mushroom like fungi on her wals and she hadclittle children. Be honest with you it makes you want to through everythingvout becausecif the spores. But it does say you can kill it on non pourous material.

    A hard decision.


    Katherine x
  6. lostleaf

    lostleaf Member

    thanks, ian and katherine.

    i heard also that bleach won't do the trick - that it has to be vinegar or boric acid. i made a cleaning spray that has vinegar, tea tree, and grapefruit seed extract. i have no idea if it works or not, though. unless i can see the mold, i don't know if there are any spires to start with, ad if i have gotten rid of them! invisible enemy, argh.

    thanks for the supplement tips, ian. i take a vitamin d/magnesium/calcium one, and it has been amazing. still plenty of symptoms, but it completely got rid of the worst - suicidal tenth-level-of-hell pms. i will check my multivitamin for vit k2 and zinc. i am taking equilib.

    you said you are testing antifungal herbals - do you work in a lab?

    thankyouthankyou,
    kim
  7. IanH

    IanH Active Member

    Bleach is 100% effective on hard surfaces as I pointed out. You would not use bleach on absorbent surfaces because you will break down the surface.

    Vinegar is not 100% effective on hard surfaces or any surface. If you use glacial acetic acid it will be effective but it is hard to obtain and can damage some plastics.

    Boric acid and boracic acid are effective but can damage some plastic surfaces and painted or polyurethaned wooden surfaces.

    Tea tree oil is only partially effective.

    The most effective anti-mold is copper sulphate or copper oxy-chloride but they are not easy to use.

    I have no idea about grape seed extract but I doubt it will be effective.

    No I do not work in a lab anymore but I work part time in a University clinic for the treatment of chronic diseases. We have many people with chemical sensitivities, asthma, allergic rhinitis, psoriatic arthritis, SLE, fibromyalgia, MS and ME.

    Most of these people have many chemical and pathogen sensitivities which need careful planning and treatment. Some have hypersensitivity to fungi/mold and must avoid situations where molds harbor/multiply. I don't have much to do with the molds themselves so I am asking colleagues about anti-fugal treatments aside from pharmaceuticals, particularly for respiratory syndromes.

    I should have some ideas/suggestions tomorrow.
  8. IanH

    IanH Active Member

    Combined allicin and sublingual glutathione

    Allicin is an extract of garlic and its antifungal effect is to enhance the function of thiol enzymes such as thioredoxin reductase, RNA polymerase and glutathione reductase. Glutathione is a major anti-toxin which people with ME/CFS and MCS are deficient. Glutathione IV is used a lot for microbial toxin exposure especially for respiratory exposure. The sublingual form is quite effective, although can induce some nausea at first.

    Initially we just used Allicin but over the past three months have added glutathione sublingual which more than doubles the effectiveness of Allicin.

    You can also try Pau d'Arco. But we have had mixed results with this.
  9. yuri smith

    yuri smith Member

    It is said that Prevention is better than Cure. If you find some mold in your house, it is definitely worth the cost to get it removed and look for mold in the walls. It is really expensive, and you might even need a payday loan to pay for it, but it will be a lot better than waiting. Mildew spreads pretty easily and can cause all kinds of health difficulties for you. If you do not get it taken care of, you will regret it. Get more information at: Get the mold situation looked at