The Need for More Pragmatic Treatment Options

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lostleaf, Jun 3, 2013.

  1. lostleaf

    lostleaf Member

    Two months ago I was diagnosed with CIRS triggered by mold sensitivity. My doctor said I need to move into a mold-free environment and replace all my possessions so that they don't contaminate my safe new dwelling.

    I think a lot of people hear this from their doctors (if they are lucky enough to have a doc who believes them in the first place.) I believe the step is truly necessary and that it is the only way I could ever become truly well.

    But I think there is a big, big need here for a treatment approach that acknowledges that that is just not an option for most people. I simply do not have the resources to manifest a brand-new home that is not shared housing, replace my computer, replace my car, replace my furniture and everything else. This is thousands and thousands of dollars.

    I'm sure I am not the only one. Many of us have been sick long enough that we are working reduced hours or not at all. Many of us are without health insurance and are already paying a lot of money for health care. And many of us have been too tired to maintain relationships and/or have effectively lost relationships because those people do not believe in our illness - so we don't have people to support us as we try and completely replace all the physical trappings of our lives.

    There is a wide assortment of info on the web about cleaning our belongings. So theoretically, we might be able to clean some things so that we don't have to come up with money for new ones. But I have had an impossible time finding cleaning information that feels trustworthy. There is too much conflicting information for me to trust any of the processes.

    I would really value a more pragmatic treatment approach that said "Yes, the best option is to get rid of anything that may have a mycotoxin on it, but we realize that most people can't afford that. So here are a few more options prioritized to minimize the most risk for the amount of resources you have available."

    This isn't a criticism of the hard, good work the doctors and other professionals in this field are already doing. I just wanted it to be out there that more options are needed. If a patient needs to go back to the first step of the Shoemaker Protocol every time they are exposed to mold, most of us will never get past step 3 because we cannot afford to replace everything. That really reduces the payoff of all the research and work that goes into the other, later steps.

    Kim
  2. TigerLilea

    TigerLilea Member

    Kim, my understanding is that mold spores that land on DRY surfaces can be cleaned off. There is no need to throw out everything that you own. Mold only grows on wet damp areas. Some of these doctors go overboard on their recommendations.
  3. IanH

    IanH Active Member

    Firstly, you need to know the degree of your response to the mold. Which mold is it? If you have a severe allergic response then you probably do need to move and ditch your stuff otherwise you may suffer an anaphylatic reaction. That said, it sounds like your response is not a severe allergic response but is a chemical sensitivity response in your airways. (CIRS) Your bronchiols contain a set of xenobiotic sensors which alert your immune system to the presence of the toxins, including biologicals such as mold spores and mold tissue. The immune response can be high in the airways so causing asthma and restriction. If this is so, then you need to decrease your sensitivity as well as clean the place as best you can.. The sensitivity reaction is dose related so that if you can get the level in the air down and decrease your sensitivity you may be fine. The problem is a cytokine called interleukine-17 which is reduced with protocol below.

    I have seen this work successfully in a number of our patients.

    To decrease your sensitivity I recommend:
    Vitamin D3 10,000IU for one month followed by a reduction to 5000IU permanently
    Vitamin K2 100mcg daily permanently
    Zinc chelate 25 mg daily reduce to 12.5 mg after three months
    Magnesium glycinate or other preparation 200mg twice daily, permanently
    sublingual glutathione 50mg twice daily, for three months.
    Omega 3 EPA/DHA, highly purified two caps daily reduce to one cap after three months.
    Pau D'arco (if you can tolerate it) taken for one month.
    Allicin (which is a garlic extract) taken for one month at a dose of 1000mg daily.

    I know it is a lot of stuff but you could add a good dose of ginger as there is some good recent research on the combination of vitamin D3 with ginger to alleviate asthmatic reactivity. Even these two items alone would probably help you.

    I noticed that you mention sleep apnea in another post and this can be helped by taking the top 6 items. However if you are carrying a lot of weight you may need to extend the 10,000IU vitamin D to two months because extra body fat will take the vitamin D from your blood and not release it.
  4. Forebearance

    Forebearance Member

    Hi Kim,

    I think that so far, not a lot of people hear this from their doctors because not a lot of doctors are up to date on this stuff.

    I agree with you that the suggestions your doctor gave you are very difficult to do and we need more and better options. But as far as I know this approach is the only way to experience a dramatic improvement in health when in your situation. Maybe doctors should be offering it as a choice: you could go this pretty extreme route or you could chose to stay in a state of feeling less well.

    It's sad that this is the best option we have right now. I wish more research would be done into healing mold-poisoned CFS patients.

    I think I mentioned before that it would be prudent to put your current possessions into storage or get rid of them but not to replace everything. The less stuff you have, the easier your life will be in the future. Until they find a cure for this.

    Before doctors figured out what to tell patients, patients had to figure it out on their own. Have you ever read Dr. Klein's story? It used to be at a site called Stachy5U. He spent more money and effort on getting clear of mycotoxins than anybody I've ever heard of.

    Forebearance