Erik Mold Warrior

Discussion in 'Fibromyalgia Main Forum' started by desertlass, Mar 14, 2007.

  1. desertlass

    desertlass New Member

    I haven't seen you on here in a while. I wanted to recommend a book/article to you that I thought you might like.

    Hope you're doing okay,
    Lisette
  2. Slayadragon

    Slayadragon New Member

    So how well _are_ you doing now?

    Do you feel like you're at or close to the level that you were at before you got sick?

    If not, what things aren't as good?

    Hang gliding instructor would have been a very cool occupation, by the way. I didn't know that about you until a couple of days ago.

    Best, Lisa


    P.S. I wish I knew how Gretchen is doing. I'm worried about her.

  3. Slayadragon

    Slayadragon New Member

    And so....what are the clues that you see on the board that make you think that people might have mold exposure? (Other than obvious mold sightings or smells?)

    You've convinced me that stachybotrys chartarum is a horrendous thing, and I'm motivated to go to a lot of trouble to avoid it.

    I'm pretty sure that I know what it looks and smells like, and have observed no evidence of it in any of the places where I spend time.

    What else (if anything) should I do to be safe?

    Thanks.....

    Best, Lisa
  4. wrthster

    wrthster New Member

    It is great to see you are basically fully recovered. I remember how much mold bothered me as a child and still hunts me to this day!!! I can guarantee it is playing a big role in all this, but not the only.

    When you refer to "complete mold avoidance" can you please clarify what that means: with respect to living arrangements, what type of climates, what foods you stay away from, how it effects your social life, any helful supplements, and can the body ever build up resistance to not be so sensitive? Why are we so different?

    Finally, you speak with very high regard for Dr. Shoemaker. Have you ever seen him in person and do you feel he is the best of the CFS/FM/Lyme docs?

    Would love to learn more about this and I am sure others on the board would as well.
  5. luckysue

    luckysue New Member

    Erik,
    I have heard of using cholestrymine. Did you follow whatever the book said & have you been to Dr. Shoemaker personally of "mold warrior" book? I have yet to read it.
    I have had horrible toxic mold exposure & that is when my CFIDS/FM turned into a life threatening situation for me.
    let me know,
    sue
  6. luckysue

    luckysue New Member

    Please let us know what you did to get well.
    Sue
  7. desertlass

    desertlass New Member

    I have meaning to say hello, but especially after reading the post (the one Lisa refers to on Hang Gliding and how your family treated you.)

    Have you ever heard of the book by Peggy Munson called "Stricken" that has essays compiled from various patients? The article I thought you'd like is "The White Light Fascists". It sums up a lot of what I feel about certain attitudes that come up from time to time.

    Anyway, that article was suggested to you, not to anyone who isn't "open" to it.

    Do you have a "how I came out of the Mold" story anywhere on here?
    Did you take glutathione to help detox from mold? I'm still wading through the chronic toxin site, so bear with me. So many new ideas are coming at me in one months' time. I'm trying to see a bigger picture, but I feel like I only have my daughter's "Froggy Flashlight" to see by.

    Did you have accompanying FM symptoms at any point?

    Sorry for all the ??
    I hope the article I recommended to you makes up for all the questions.

    Also, I once saw a post that accused you of flaming, and seemed to lump you in with people giving a "beating" to people on topics you didn't agree with, and characterized you in a roundabout way as being negative or toxic or hating and I don't know what all. My mouth kind of dropped, because I am so often amazed at how much work and insight people share with each other. I don't know what gets defined as a "flame" around here, or "negative", unless that's how all disagreeing is defined, but I haven't seen it, and not from you.

    I didn't want to presume to defend on that post, because it wasn't anything to do with me, but it has always bothered me. (Gee, I always thought calls for stories that only jive with one viewpoint was called propoganda.) However, I could be totally naive, and maybe you're you're a real blackguard, trying to make money by denegrating Mold. Next thing I know, I bet I'll see you on an infomercial with your book called "What 'They' Don't Want You to Know about Mold", to soon be followed up with "How I Chose to Be Sick, Disbelieved and Abandoned, and How You Can, Too. ;-)

    Thanks,
    Lisette
  8. ravenpaige

    ravenpaige New Member

    Erik,
    For what it's worth, I've always enjoyed your posts and have not found them to be out of line. Perhaps, when you're speaking about the help you've discovered for yourself, you tend to have a tone that's "on the edge of fanatical"...but then I think many on this board adopt the same tone when they're talking about something that they feel has really worked for them. I know I tend to be that way when talking about diet, because for me, it has been the only thing I've found that has consistently made a difference.

    But then, that's one of the frustrating things. Nothing seems to work for everyone, and I'm not sure if I can explain why. Some of it may be improper execution. When I read about what you've gone through to eliminate mold, I tend to think, "well, I could never do that." In the same way, I'm sure many people hear about the diet I've been following for 4-5 years now and think "but that's just too hard." Even with the Valcyte treatment, which is supposed to last just 6 months or so, I hear many saying that they just can't adapt to the requirements, which appear to be extreme worsening of symptoms for a couple of months. I'm not sure that I could follow through with that myself.

    And so it goes with this DD. It seems that whatever people have found that helps them to actually recover, or recover somewhat, it always involves extreme changes and adaptation.

    So I guess the biggest question that remains is: why is that? What has happen, what variable has changed, why do we suddenly find ourselves in such a hostile world? Many of us can't eat wheat, or milk, or yeast, or some other common food. We get worse with temperature changes, barometric changes, time changes... Extra exercise or emotions can set off a flare that might last for weeks.

    And so we work to control and balance every little variable: food, activity, sleep, stress, environment. Isn't this ridiculous? And yet, when all is said and done, we can only control so much. As for me, I really have no doubt that mold can add to my symptoms, and it's really the thing I've suspected for quite some time at my work, because everyday at work after being there for an hour of so I start sniffling and sneezing, while I don't have those symptoms at home. At the very least, this points to some environmental factor. But then I have a daughter who is also sick, and she certainly doesn't go to work with me everyday. So there must be additional factors.

    And then we get down to the one factor, whatever it is, that has changed this world into such a hostile place for so many of us. What is it? Is it a gene or other hereditary factor? A virus? Something changed about the food, or the water, or the air, or the sunshine? What is it that could be pervasive enough to affect so many people world-wide, and yet selective enough to only really strike down a few?

    I don't have the answer to these questions, but I do think this is the central problem. None of us yet has found THE key. Some of us (and we are the lucky ones) have found some strategy like diet or herbs or environmental changes that has allowed us to function at a much higher level. But I don't think I've really ever met anyone who will say, if they are honest at all, that they are back at 100%. As you've quoted Dr. Peterson as responding when asked how many of the original Incline Valley sufferers had fully recovered: "None."

    And so we keep on, looking for the thing that will actually allow us to keep living in this world with some comfort and yes, a bit of our old life back.

    To me, that means your mold-avoidance strategy is a very useful thing to offer here on this board. It may not help everyone, and it may not be possible for some, but just one improvement for one person is at least a small victory in the fight. And eventually, someday, I really believe this will all somehow fit together and make sense, we'll come up with the combination or the key, whatever it is that will unlock this mystery, and then we will have many people actually, not just improve, but recover. I keep waiting for that day.
  9. Slayadragon

    Slayadragon New Member

    My friend's mother got from being bedridden 12 years ago to slowly and progressively (with no relapses) being at 100% for a number of years. (Actually substantially more than 100%, if you lookk at that list.)

    I believe that full recovery is possible.

    Best, Lisa

  10. woofmom

    woofmom New Member

    Concerning receptor blocking: Are you talking about glutamate receptors?
  11. wrthster

    wrthster New Member

    Maybe you should write a book!!! You seem to have a lot to share. But to be honest and quite frank, I can't follow half of what you are saying. But it is very obvious you are extremely bright, well read, and highly intelligent!

    So if you can put things into more common layman terms in an easy to read and understand format, you might have a winner on your hands!

    Just my thoughts, I have read a lot of your posts, and if they were more to the point and easy to understand all that knowledge could be put in a book and potentially help a lot of people. In addition, it could be a good source of income for you. It is very obvious you know a lot more than most of these rocket scientist doctors! So I hope you do not take offense, just a few suggestions! I was in marketing for a long time, and how you present and communicate is a very powerful tool when combined with someone who has your intelligence and knowledge!
  12. desertlass

    desertlass New Member

    Actually, my post that was not about mold at all turned out to give me a lot to think about. Thanks. I guess I am slow to consider things, or I don't know what. Sigh. I'm just feeling a little low-- nothing to do with this topic. I just feel like I've been in the dark for so long.

    Please don't leave the board. You're not a flamer-- I have never seen you post anything other than a suggestion or a concept to consider, or something you went through personally. If you are a meanie, then you have been doing it on posts that I haven't seen. And even if you are a meanie, I don't care, I still need to know what you know. When I see your photo on that mountaintop, than I see someone who was "Meaner than CFS" and that's someone I need to listen to, like it or not.

    I'm not a victim, but I'm not a survivor, either. The reason is that I don't know yet how this is going to turn out! But what I do know is that I've come this far, so that must mean I'm a fighter, because I haven't yet given up and conceded defeat. This is one powerful dragon, and for no good reason, it's in my life, and I have to contend with it.

    When an acquaintance of mine told me her doctor is going to treat her CFS by first having her test for mold in her house, I would have thought, What the heck? we live in the dryest area of the world?! My skin is so parched I look like a before photo for skin cream. Bread turns to toast on its own, here. But now, I am LISTENING to her.

    If someone is recommending something just to be able to show off their knowledge or prowess in some way, then I'll know it. I can smell that ego at twenty paces.So, please keep checking in, because there's no other way for me to pester you people.
    Thanks
    Lisette