CFS: Getting Truly Well by Addressing Toxic Mold Poisoning

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jun 12, 2009.

  1. Slayadragon

    Slayadragon New Member

    Hi All,

    Following is a slightly altered version of a letter that I just wrote to an individual who has recently started to address toxic mold issues.

    “Erik” is Erik Johnson. His story is described in “Mold Warriors” by Dr. Ritchie Shoemaker (Ch. 17, “Mold at Ground Zero in CFS"), though it’s actually much more impressive than the book makes it seem.

    I strongly suggest that people who are learning about toxic mold read this book. Another one that presents a summary of the same information in a form that’s easier to understand is “Surviving Toxic Black Mold Syndrome” by Dr. Mary Beth Short-Ray.

    (Please don’t follow Dr. Short-Ray’s suggestions regarding remediating your own house though! CFS sufferers in particular should not under any circumstances poke around looking for mold in their homes, try to fix any mold that they know exists themselves, or be anywhere near their homes while professional remediation is going on. This can result in increased permanent severe debilitation or death. This stuff is dangerous! PLEASE be safe.)

    What’s not discussed in the books but relevant to CFS sufferers is summarized below.

    In this note, I offer to personally help this individual out with a “let’s-learn-to-identify-mold” camping trip. I don’t know that I can do that for everyone who might be interested, but if folks want we can discuss how that might be done.

    A few of us looking into this issue keep coming back to the idea of a Mold Warrior Camp, but there would need to be true commitment from at least a few people to make it happen.

    I’m happy to answer questions if folks have them.


    Lisa Petrison (Slaya Dragon)


    Let me tell you briefly how Erik, Forebearance, Khalyal and I are addressing our mold issues.

    I will preface this by telling you that it is not the way in which medical professionals treat this illness.  It’s a very challenging route to wellness.  The doctors with whom I’ve spoken think that their patients would not want to pursue it.  They also would not be able to give them the guidance that they need in order to be successful at it.

    However, the doctors with whom we’ve spoken (Dr. Shoemaker, Dr. Short-Ray, and my own CFS physicians Dr. Keith Berndtson and Dr. Dale Guyer) about this and who understand the underlying concepts are in agreement that the way in which we’re pursuing this makes sense from a theoretical point of view.

    CFS patients do not get well from mold toxicity through the other treatments that are available.  This is one thing that seems to be of unanimous consensus amongst doctors.  

    Many doctors in the field of CFS have concluded that mold is not a relevant factor based on this fact.  They see CFS patients move out of moldy homes or workplaces and then take a variety of drugs or supplements.  When the patients achieve no improved health, they conclude that mold was not a problem.

    Dr. Peterson falls into this category, for instance.  So did Dr. Guyer prior to witnessing my own recovery.  Many of the Lyme doctors also seem to think this.

    A second set of doctors are convinced that mold illness is related to CFS.  However, they too admit that treating these particular patients does not help them.  Dr. Shoemaker is the leading doctor in this camp.

    Certainly, doctors will do their best to try to help CFS patients with mold illness.  I believe that all the doctors in this field are extremely caring and want to do what they can.

    Just moving out of a moldy house is a very good thing to do, but it rarely if ever results in any real gains for a CFS patient.  Mostly what it will do is to stop a downward slide.  This is extremely important, but it is not getting well.

    Supplements and drugs related to treating mold poisoning may or may not result in mild improvements for CFS patients.  I’ve yet to hear any doctors state that they’re gotten major improvements from this approach.

    In “Mold Warriors,” Dr. Shoemaker discusses how CFS patients generally have complement (that’s C3a and C4a) that remains elevated even after the patient has been removed from the moldy environment and been treated with cholestyramine (csm).  The book makes it sound like this happens for no reason.

    What actually seems to be happening is that the complement remains elevated only insofar as the body is still being hit with mold poison.  It’s just that the amount of mold poison needed in order to cause the elevation is extremely tiny, to the point that most people never get away from it.

    This is similar to an anaphylactic reaction.  Erik discusses this in “Mold Warriors” (Ch.17) with regard to having observed the military officer’s reaction to the peanut butter on Erik’s breath.  Just a few molecules of the stuff was enough to make the guy pass out.

    The same thing seems to be happening with the mold poison.  Insofar as people are really sensitive to this stuff, even an infinitesimal amount can cause complement to spike to very high levels.  Until people get wholly clear of the mold poison (which most people never do), complement stays elevated and wellness is not achieved.

    Moving out of my moldy house did not help me very much at all.  Probably it helped me to get to about the point where you’re at now. [Going from being almost oblivious to my surroundings to somewhat more aware and able to do a very few things.]

    Erik mentioned to me a few weeks after I moved out that I might try putting aside everything that had been in the house, since it could be causing me to be sick.  After I did that for several days, I found that I could not go near any of that stuff.  Wearing my heavy coat caused me to have to stop the car and repeatedly vomit by the side of the road, then have to turn back.  Putting my hand in my purse caused a painful red burn that lasted for a week.  Washed clothing made my heart beat fast.

    So I left all the stuff behind in the house.  I bought some new clothes,  I found another place to live.  I tried to tell if places I went were bad and stayed out of them if they did.  

    I got somewhat better.  Many of my stranger symptoms faded or disappeared.  I was lying on the couch or in bed only 16 hours a day instead of 22.

    During this time, I was avoiding mold to some extent.  However, I was still getting exposed to a substantial amount of it:  in buildings, in the outside air, and on objects.  I just wasn’t sensitive to know that it was bothering me, just like I hadn’t known that the mold in my house was bothering me.

    About nine months after I moved out of my house, I went to visit Erik in Lake Tahoe.  We spent the time camping in the wilderness. The goal was to be in a place where I got very little mold exposure, both from the outside air and from buildings/objects.  We went to different places to see how they felt to me, and he taught me what to do when I was exposed to more mold than my body could handle.

    After I did that, my body became really sensitive to even extremely slight amounts of mold.  Many more buildings became places that I could not go.  More objects became bothersome.  The outside air in metropolitan areas (especially under certain weather conditions) became extremely problematic.

    The upside is that these reactions allow me to know where the mold is.  And insofar as I avoid the mold when I encounter it, I remain well.  Truly well.  Not “well for a CFS sufferer,” but well like a normal person.

    It’s difficult to avoid mold that scrupulously though.

    That’s the point where Erik is at.  He avoids mold and remains well.  This is hard for him.  It’s tiring physically and emotionally to do this, and he’s been doing it for 25 years.  Over time, he has become able to tolerate a bit more mold without getting sick, apparently as a result of the limited amount of detoxification that his body is capable of doing on its own.  But it’s a hard road.

    I currently am doing what I am calling a “Noble Experiment” to see if I can get my own reactivity to mold down.  At present, I am doing everything possible that I can to get my own mold exposure as low as it possibly can be.  I thus am living in a tent in the most remote part of California desert (halfway between Fresno and Big Sur).  While I’m doing this, I’m pushing my system to detox using cholestyramine and other things.  My hope is that despite the fact that CFS sufferers tend not to be much helped through detoxification, doing it in this way will be the key to making it work.

    We know that cholestyramine and other detox stuff doesn’t work for CFS patients on its own. We know (according to Erik) that extreme avoidance does work in decreasing reactivity, but that it takes years  and years to make a dent.  We know what sort of detox responses Erik got while practicing extreme avoidance, and his belief (confirmed with my own experiences) that the body only releases toxins when it’s in a really  pristine environment (assumedly low enough to get C4a consistently  down to wholly normal).  And I have learned that if I mix csm and being in a really pristine environment, my own body spits out toxins like crazy. 

    I wouldn’t encourage anyone else to pursue this experiment at this time.  It’s a tough road.  It’s boring to be out in the desert for month after month.  The symptoms I’m getting from the detox are not nearly as bad as people go through on Valcyte, and they’re not nearly as bad as they were when I was trying to detox when I was still around a moderate amount of mold poison, but they’re not tremendously fun either.  If it works for me, perhaps other people would like to pursue it.  We should know pretty soon.

    I do think that getting to the point where people can identify mold and then avoid it might be worthwhile, but that’s a tough road too.  It might involve big changes in life, which can be especially difficult when family is involved.  Coming into contact with mold after having been away from it is painful.  

    However, those of who have really put our minds to going this route seem to have found it worth it.

    Anyway, I wanted to share this with you so that you would have the information.
    Next, I am going to offer to help get your own sensitivity up so that you can find mold, if you want me to do that.

    In order to be able to identify mold, you need to be away from it for a couple of weeks.  The problem here is:  how can you be away from mold if you can’t identify it?

    The answer is, it’s very difficult.  It took Erik years to do it on his own, getting to a little bit lower of a level all the time, when he was first figuring this out.  Others doing this struggled tremendously to make gains, wasting huge amounts of money and long amounts of time before we improved much.

    The way to resolve this is simple.  For a couple of weeks, you come camping with me.  I will keep control over the amount of mold that you get exposed to.  You can just lie around and do nothing.  I’ll take care of everything.  

    At that point, your system should be able to identify small amounts of mold easily.  We then can do some “lessons” (grandiose word) with regard to what to do when those exposures occur.

    I have to warn you that this may change your life.  You may find that the options that are available to you in terms of where and how you can live decline dramatically when your system becomes more sensitive.  The relevant question here is:  How much do I want to be well?  What am I willing to do to get that?

    I don’t know what the answer is for you.  Forebearance and I will provide more information to you about what’s involved if you like.  

    I just wanted to make the offer.  Erik helped me do this, and so it seems right that I should offer to help others.

    Love, Lisa

    [This Message was Edited on 06/12/2009]
  2. AuntTammie

    AuntTammie New Member

    It is very cool of you to make that offer....and nice that you took the time to write all this (what kind of camping setup do you have that you are able to access a computer? when I think camping, I think tent....which I used to love, but now sleeping on the ground is way too painful, and I wouldn't have the energy to set it up anyway)

    as much as I would love the chance to get away, to meet someone else who really understands what its like to be so sick, to find out for sure if mold is one of my problems and to learn about how to deal with it, I wouldn't have the money or the energy to be able to do the temporary camping thing, and I definitely wouldn't have either to be able to do what it takes long term (starting with getting rid of my apt and clothes, etc)......I truly would love to be healthy again, but being on disability and being pretty much housebound these days makes taking that kind of action pretty much impossible.....and honestly, from what you are saying, it sounds like there is no going back - like once you get away from mold, you pretty much have to isolate yourself completely from everyone and everything in order to stay healthy and that doesn't really sound like much of a life either - I want to get healthy in order to have a life again

    not saying that to be discouraging, or anything - I think it's great that you are doing well and that you are trying to help others get better, too - but as lonely and sad as my life currently is, the whole camping in the desert (possibly forever) thing sounds even more so.....maybe I am just picturing it differently than it is, though
  3. krock

    krock Member

    For all your hard work in this area. I have read many of your posts. I too have CFS and toxic mold poisoning. Seen Dr. Shoemaker, and had very high C4a over 32,000.

    I am interested in your camping education idea. I may want to take you up on it. Key factors would be what my body and my wallet can take.
  4. bigmama2

    bigmama2 New Member

    wow, Lisa, what a fascinating story! congrats on your wellness (when you avoid all mold). that is wonderful. thanks for sharing your story. i wish you have continued success. and say hi to that Eric dude for me! so what do you guys do all day? what is daily living in the desert like? how do you get food and shower and bathroom etc? and the heat?

    a few more questions about mold and cfs--
    do you and he think the VCS test is accurate/helpful? maybe i'll take it.
    what is best way to test if my home has mold? its a 1978 cement block home in florida.

    are you doing methylation treatments now? if so hows it going?

    great to hear from you--- keep us all posted on "camp"!

  5. Slayadragon

    Slayadragon New Member

    Hi, Aunt Tammie.

    Forebearance mentioned to me a while back that she’s worried about you. I’m glad that you wrote.

    >what kind of camping setup do you have that you are able to access a computer?

    Right now I’m camping at a hot springs resort that has Wi-Fi. No cell phone service here though! I almost always can get Internet service either in the places that I stay or in nearby towns. Technology is a wonderful thing.

    >when I think camping, I think tent....which I used to love, but now sleeping on the ground is way too painful

    Forebearance has been thinking about this issue since she can’t sleep on the ground either. Maybe she will pitch in with some ideas.

    > and I wouldn't have the energy to set it up anyway

    This is another reason to have a Mold Warrior Camp: So that someone could help get things set up. Ideally we also would have a Professional Pamperer, since CFS sufferers have a hard time getting this elsewhere! Of course, those things would cost money.

    >from what you are saying, it sounds like there is no going back - like once you get away from mold, you pretty much have to isolate yourself completely from everyone and everything in order to stay healthy

    No, this is not true! I’m afraid here I’ve made it sound like the only way for CFS sufferers to improve or get well from mold issues is to live permanently in a tent in the middle of nowhere.

    Erik would not be happy with my giving people this idea. The reason that he worked so hard to figure out creative ways to deal with mold is so that he and others could live pretty normal lives but remain well.

    Erik lives in Lake Tahoe/Truckee, a resort community on the border of northern California and Nevada. He works in Reno. This is not the middle of nowhere! Mold avoidance does take careful attention for him, but his life is nowhere near as strange as people think.

    After visiting Erik and before embarking on this “Noble Experiment,” I was living a pretty normal life too.

    First I went back to Chicago for a few months. Doing mold avoidance in a big city is a challenge (toxic mold grows inside buildings and then gets into the outside air, so places with a lot of buildings have worse mold problems outside). However, I managed to do this without getting sick again, using the bag of tricks that Erik taught me. It was stressful and tiring to do this, but being tired is not the same as having CFS! I remained well during this time.

    Toxic mold problems in the outside air get worse in the winter, so I decided to move somewhere warmer during that time. For a number of months, I shared a house with a woman in Las Cruces, NM. This is a city of about 90,000 people. Not a big metropolitan area, but not the Godforsaken Wilderness either. I felt really good there all winter.

    After about three months there, the place I was living developed a horrendous toxic mold problem. At first I couldn’t believe it, but it got worse and worse each day. Within a couple of weeks, I went from feeling great to having full-fledged CFS again. This was terrible luck. The only good thing was that I was renting on a month-to-month basis and so didn’t lose any money.

    As soon as I realized what was happening, I moved out and decided to alternate staying in hotels (Hampton Inns tend to be pretty good) and sleeping in the tent until I found another place. My belongings all were contaminated, but since they hadn’t been in the house for a really long time, they cleaned up pretty well.

    I didn’t find a great place to live right away and realized that living in the tent (which felt really good to me) wasn’t such a bad short-term solution. It was at this point that I concluded that all this fleeing-from-mold-stuff was not an optimal way to live the rest of my life and that experimenting with the detoxing-in-the-desert idea for a while to see if I could get really well seemed like it could be worthwhile.

    Regardless of whether I get really well, I’m not planning to live in a tent forever! That would be ridiculous. This is just a short-term experiment. When I put my mind to it, I will find a safe place to live. I just need to make sure that I don’t make a commitment that causes me to lose a lot of money if the place goes bad. It’s quite possible that I could live in a place for years and years without it becoming problematic, but I don’t want to take the chance of losing more money.

    Forebearance has made substantial improvements in her health without ever having spent any time in a tent in the wilderness. I made progress before I ever slept in a tent. (I NEVER went camping in my whole life before visiting Erik.) I don't think it's optimal to try to practice mold avoidance without going camping first, but it is possible.

    > as lonely and sad as my life currently is, the whole camping in the desert (possibly forever) thing sounds even more so

    Even in the short-term, I’m not finding this to be that lonely. Certainly it’s not as lonely as lying in bed all the time was! When you’re well, meeting people is a lot easier and more fun. I’ve managed to hook up with a few friends in my travels. The Internet and (when I have it) phone service helps too. My interactions with folks now, even during this interim time, are much more frequent (not to mention rewarding) than they were back when I was sick.

    [This Message was Edited on 06/13/2009]
  6. Slayadragon

    Slayadragon New Member

    Hi, Krock.

    > I too have CFS and toxic mold poisoning.

    I’d like to hear more about your story. Do you have a summary post on the board?

    > Seen Dr. Shoemaker

    What did he say about your case, in terms of the likelihood that you might improve?

    Are you pursuing any treatments with him?

    Did he talk to you about VIP (vasoactive intestinal polypeptide)? If so, did he think it might be useful for your case?

    >had very high C4a over 32,000

    Wow, that is high! Are you still living in a moldy place, do you think?

    >I am interested in your camping education idea. I may want to take you up on it. Key factors would be what my body and my wallet can take.

    We should talk more then. Let’s keep in touch.

  7. Slayadragon

    Slayadragon New Member

    Hi, Big Mama.

    You know, I was just thinking about you when I was writing this post. It’s been a while since we’ve corresponded. I hope you’re doing okay.

    >so what do you guys do all day?

    This extended camping trip is a bit boring, I admit. On the other hand, boredom is something that happens when you’re well, so I’m not complaining too much.

    I have a couple of little work projects that I’m doing, but it’s not as much as I’d like. That’s the main reason I’d like to get better: to give me more flexibility in where I can work and what kind of work I can do. Before I got sick, I was a college professor and business consultant. Doing that kind of work likely would be difficult if I’m limited in terms of what areas and buildings I can go in.

    Also, I still have room to improve a bit, especially in my cognitive functioning. When I’m avoiding mold effectively, I’m within the bounds of what anybody would consider “well” in all respects. However, the sharp focus that’s needed to do the sort of work I used to do is not usually there yet regardless of how well I’m avoiding mold and especially when I’m around a moderate amount of mold. I’d like to see if with this extended period of “detoxing in the desert,” I can get that mental focus back.

    What I’m doing all day now: sitting by the hot springs pool, talking with the owners of resort and guests, reading books, watching movies on my portable DVD player, cooking food on my little grill/stove, fiddling around on the Internet.

    I generally can tolerate small towns without any problems, so that gives more flexibility. The closest one to here is Los Banos, where I’ve been going a couple of times a week. Some of the buildings there have too much toxic mold in them for me to tolerate, but some are fine. I generally eat lunch at a Chinese or Mexican restaurant, spend the afternoon sitting in Starbucks (their Java Chip frappucinos are very good) and then go to the grocery store and maybe Target. I miss bookstores, so when I drive through a larger town I often stop at one and look.

    I’ve been using this time in my life to travel around to different places in NM, Arizona and California (so far). I’m mostly visiting places with more outdoor activities since I’m somewhat limited in terms of buildings I can go into. So far, I’ve been to a lot of different places in NM; Phoenix and Tucson; Sedona, AZ; the Grand Canyon; the Mojave National Preserve; Death Valley National Park; the outskirts of Las Vegas; Sequoia National Park; the Carmel/Monterey/Big Sur area; Hearst Castle on the central California coast; and a bunch of towns and small cities. Traveling around is more challenging than sitting in one place in terms of mold avoidance skills needed, but it’s a whole lot more fun.

    It’s also been interesting to see what places are good vs. bad in terms of mold issues. This isn’t always what you’d expect. Tucson is much worse than Chicago or just anywhere else I’ve been (except Texas), for instance. Sequoia was really messed up. My experience with Las Vegas was better than I thought; I wouldn’t be too scared to return, though maybe not to the strip. And Big Sur was absolutely terrible: the firefighting activities there seem to have fostered a concoction of toxic mold and chemicals that really threw me for a loop.

    Mold avoidance as Erik practices it takes some skill, and I’m getting better at it. Despite Tucson being an extremely bad city, I managed to spend a couple of days there (including visiting a CFS sufferer at her not-good house) without suffering any major effects. This was an accomplishment!

    The one thing I’ve missed being on the road is cultural activities. (This also was true in Las Cruces, which is pretty much a cultural wasteland.) If I don’t get well enough to live a substantially more normal life, I’d like to find a place that has some public venues (theaters, concert halls, etc.) that are okay in terms of toxic mold so that I can attend on a regular basis. Buildings don’t have to be really great for me to spend a couple of hours in now that I’m using Erik’s tricks, but they can’t be really bad either. Though I’m not sure that I’ll ever want to go in a really bad building again no matter how well I get. It’s not good for anybody to be around a whole lot of this stuff!

    Erik’s life is not that much different than anybody else’s. He works at a job and does other stuff. The main thing is that he participates in a lot more outdoor activities than most people do, because he feels better when he’s outside. He’s in really great shape (especially for a guy in his mid-50s) as a result.

    > how do you get food and shower and bathroom etc?

    I’ve not found many supermarkets to have really bad toxic mold problems. There are a lot of restaurants I can go to, though certainly not all. If I take a shower and change my clothes after I visit a borderline place, I’m generally fine.

    I do miss having a refrigerator, but keeping the cooler filled with ice isn’t that hard. The one food I really miss when I’m in the wilderness is ice cream. I’ve been trying to get the owners of this hot springs resort to start stocking Haagen-Dazs bars and other frozen desserts. They’re considering it.

    The one thing that really concerned me before going on this trip was not having a shower. I need to be able to “decontaminate” after I visit a bad place. A lot of the toxins come out through my sweat, and they’re uncomfortable if I don’t wash them off promptly. And not washing for more than a day is just plain icky!

    Here at the hot springs, there’s a really pristine shower (and a great sauna!) that I use. When I’m not here or in another good hot springs resort, I have several options.

    I have a heated shower made by Zodi, which uses batteries for the pump and a little canister of propane to heat the water. It gets really hot too! I wear a bathing suit when I use that, if I can’t get enough privacy.

    I also have a “solar shower” that uses sunlight to heat up the water. This hangs in a “privacy shelter” tent that I set up, meaning that I can shower nude. (It’s not safe to use the propane shower in a tent.) This looked pretty cheesy in the box, but it works a lot better than I thought.

    I also carry a couple of washbowls with me. I heat up water on the little portable outdoor stove to use in those.

    A lot of campgrounds have showers, but a good percentage of them have mold in them. I’ll use them if they’re okay though.

    Campgrounds always have toilets, and many of those are okay. I just make sure to find one I can use while it’s still light outside. It’s not much fun to get “slammed” with mold in the toilet and then figure out a way to get cleaned up when it’s dark and cold outside.

    > and the heat?

    The other thing about traveling around is that it’s allowed me to be in optimal weather all the time. This past week, the place I’m at now has been 70-75 degrees during the day and 60 degrees at night. Soon it will be getting warmer, and then it will be time to move on.

    > do you and he think the VCS test is accurate/helpful? maybe i'll take it.

    Erik is not crazy about the idea of any kind of test because of the possibility of inaccuracy. His belief (and I agree with this) is that it’s far better for CFS sufferers to test whether mold is a problem for them by spending a set amount of time in a pristine environment, then returning to civilization. Insofar as the place you get away to actually is low in toxic mold, this test gives a really clear answer. If you come back and start reacting to tiny amounts of mold, that means it’s a problem for you. It’s hard to miss!

    I’ve heard a variety of things about the VCS from CFS sufferers. If you test positive, it’s unclear what neurotoxin you might be having problems with. If you test negative, it doesn’t necessarily mean that toxic mold isn’t an issue for you. My own VCS went from really bad to wholly normal within a few months of moving out of my moldy house. This was misleading though, since obviously toxic mold is still a problem for me!

    The VCS is an easy and cheap test to take though. There’s thus no particular reason not to take it if you don’t take the results as gospel, in my own opinion.

    > re you doing methylation treatments now? if so how’s it going?

    I started those supplements in summer 2007 and had a bear of a time with them. I read your summary of your recent experience on another post. Mine was a whole lot worse!

    In December 2007, I moved out of my moldy house. Shortly after that, my negative reactions to the methylation supplements went down dramatically. I’ve been able to increase the dosages a whole lot. (Actually, the limiting factor now is the cost of the B12 that some folks take. Ten or 20 pills per day would be really expensive! Eventually I will get some injectable B12 and try that.)

    I think the supplements are still helping me, since if I stop them for a week or two and then re-start, I get a slight but noticeable “icky-toxic” feeling. They’re just part of my routine now.

    I’ve come to strongly believe that it’s a bad idea for CFS sufferers to try to do any detox when they’re still being affected by toxic mold. The body doesn’t want to release toxins under those circumstances, and it tends to be quite painful if you push it. I’ve found that to be the case with cholestyramine as well.

    The extent to which I’ve carried being in a really pristine environment while detoxing is a bit ridiculous, I admit. But the detox experience is so much easier and effective this way that it seems the right thing for me to be doing at this time.

    > what is best way to test if my home has mold? its a 1978 cement block home in florida.

    It’s important to emphasize first that toxic mold may be causing CFS sufferers to be really sick even if they do not have a measurable toxic mold problem (or any mold problem) in their houses at all! Going into bad buildings occasionally without decontaminating afterwards can be enough. Having a bunch of stuff (or sometimes even one or two objects) that got contaminated at a previous residence or elsewhere can be enough. For some people, mold in the outside air can be enough.

    Testing the house is not the way to find out if toxic mold is a cause of our poor health, therefore.

    On the other hand, CFS sufferers who are living in a really bad place need to get out as soon as possible. If they don’t, their condition will decline. Obviously being more sick is bad in general, but staying in a bad place also usually means that when people do finally pursue mold avoidance, they will need to do it especially scrupulously.

    One thing that I’ve started to notice is that CFS sufferers tend to first get sick when living and/or working in buildings that are especially bad. Individuals who haven’t moved since getting sick may want to take a hard look at their living environment, therefore.

    CFS sufferers who are currently experiencing declines in their health also may want to take a look at their environment.

    I’ve been working on a Q&A sheet discussing various remediation issues. I will finish it up and post it on the board soon.

    Didn’t you used to live in Pennsylvania, Big Mama? Did you move all your stuff with you?

    >great to hear from you--- keep us all posted on "camp"!

    Thanks, Big Mama!

  8. krock

    krock Member

    I have various posts here and there on the board, no summary. Interesting note, I too was a college instructor and consultant at the time of getting sick. Lived in a condo in Florida with toxic mold in 2007, been sick since. I don't think I am living in a place with mold now. I moved back to Ohio last year.

    Shoemaker said he thinks I can improve, but not totally recover. So far I tried CSM and could not tolerate it, so am now on Welchol. Don't really see a difference, have been taking it about 4 months. He did talk to me about VIP, but said first I had to get C4a down thru using CSM/Welchol, and that VIP would be something to maybe consider down the road.
  9. Slayadragon

    Slayadragon New Member

    Thanks, Kelly.

    We've been talking about these issues for a long time, haven't we? More than 2 1/2 years.

    That's hard to believe. So much time went by before I started addressing mold without my knowing where it went. We all lose years and years so easily.

    It's been better since the mold avoidance, but looking back at the last year is pretty foggy too. Just because you're a lot more active and feel okay doesn't mean you're all better, maybe. This stuff seems to affect mostly the central nervous system and is pretty insidious.

    But I think I'm getting there. Maybe the intensive detox really is making a dent in this stuff and I'm getting "really and truly well". Otherwise I wouldn't be inclined to start talking about it here on this board, I suspect.

    Let's hope so!
  10. AuntTammie

    AuntTammie New Member

    Thanks so much for your response (and thank you and forebearance for your concern for me - it means a lot).....reading what you wrote in response to my questions makes it sound much more feasible, though there are still a whole bunch of questions and issues that I would need to further address before there would be any chance of doing something like the moment I am in the middle (actually I think starting to near the end - I hope) of a really bad crash, so I can't thoroughly think thru the whole thing, or stay online long, or well do much of anything....but I definitely do want to pursue this idea more in the future, and I am truly thankful that Eric and you and Forbearance are all trying to help others with all the mold stuff
  11. Slayadragon

    Slayadragon New Member

    >Shoemaker said he thinks I can improve, but not totally recover. So far I tried CSM and could not tolerate it, so am now on Welchol. Don't really see a difference, have been taking it about 4 months. He did talk to me about VIP, but said first I had to get C4a down thru using CSM/Welchol, and that VIP would be something to maybe consider down the road.

    What happened to you when you tried taking CSM?

    I started trying to use that almost immediately after I moved out of my moldy house and then periodically afterwards.

    Prior to visiting Erik and getting really "clear," I had a horrible time with that stuff. I never could take more than half a packet per day, and the detox effects even at that dose were too high for me to be willing to continue for more than a few days. It wasn't constipation (things did keep moving); it was the detox symptoms. Maybe that means I was being a wimp, but I don't think so.

    I had the same problem in trying to get my apparent Lyme infection under control. When I was unwittingly living in the moldy house, even 15 mg of doxy or minocin was too much. After I moved out and put aside my stuff, I tried 50 mg but still found it too much.

    After visiting Erik, this changed dramatically. I was able to take 300 mg of doxy for a couple of months with a not-intolerable die-off. Taking 1-3 packets of cholestyramine a day became doable for me. Now the limiting factor for me is the constipation, and I don't want to push it and have the toxins get "backed up."

    I certainly get a lot of detox symptoms to the csm. It induces a weird drugged feeling, like being on downers. I feel toxic a lot. It saps my energy. But it's tolerable. And I feel I'm making progress.

    I never would have made any progress at all with the detox without Erik's extreme avoidance. That I can say for absolute sure.

    I'd like to hear more about the VIP. Do you have any information about it? Or know where I can access any info?

    I have the summary from Dr. Shoemaker's Reno presentation, but VIP is only mentioned briefly.

    Did he discuss any other treatment options with you?

    I'm glad to be discussing this with you.


    [This Message was Edited on 06/13/2009]
  12. Slayadragon

    Slayadragon New Member

    Okay, I'll keep an eye on this thread into the future in case you or others want to ask questions on it.

  13. Forebearance

    Forebearance Member

    I would love to do a detoxing vacation, especially with a group of people!
    I just have to get ready, both physically and financially. Also logistically.
    I want to have some kind of back-up plan ready in case I come home and suddenly can’t stand my house any more!

    Aunt Tammie, I wanted to tell you that when Lisa says “camping”, it’s not as bad as it sounds. The main goal is to get away from mold and sleep in fresh air.
    It’s not about roughing it or being deprived.

    So I’m picturing doing things like going to a sidewalk cafe for lunch, and sitting in the hot springs for hours. I would probably bring a hammock and a bunch of books and just lop around a lot.

    Sure it would be not that exciting a vacation, but my normal daily life is not that exciting, either! lol

    I agree that there is no way I could get to sleep on the ground.
    So far, I’ve come up with these ideas for things to sleep on:
    A hammock (with a stand)
    An extra-large camping cot, with some kind of mattress on it.
    A trailer with a pop-up tent.

    The last idea is more expensive, of course. I’ve found two, the Topo and the Go, that have no wood in them, and don’t look like they would out-gas chemicals too much.
    You could put a regular mattress in one of those puppies.

    Well, if you could stand the smell, you could bring an inflatable AeroBed. I can’t take the smell of those things.There are probably more ideas I haven’t found yet.

    I’m so glad that some more people are thinking about this mold-free camping idea. It looks like doing something like this could allow us to make a big leap forward in getting better faster.

  14. AuntTammie

    AuntTammie New Member

    Thank you for all your input about this. I just realized that I wrote about crashing and not being able to think much about this rt now, and then I turned around and practically wrote a book on another thread! I was serious about crashing, but the stuff that I wrote elsewhere is stuff that comes so naturally to me I don't really have to cognitively process it in the way that I do with new material, whereas the mold stuff and the logistics related to the whole camp idea are newer things that i actually do have to think about/process more (& can't do when foggy)....if that makes sense.
  15. krock

    krock Member

    Sorry it has taken so long to reply. I have been feeling too bad to think or write clearly for a while now.

    In answer to your question about what happened when I tried taking CSM, the best way I can describe it is that it felt like I did when I was living in the moldy condo. I felt worse, fatigue, headaches, etc. Do you think that was a detox reaction?

    I honestly don't remember too much of what Dr. S said about VIP. I just remember that blood work showed mine was very low, and that he uses some type of medication to try to bring it back to normal, but that he said it was something we could discuss more down the road. I will let you know if/when I get more info on it.

    Would it be okay if I email you so we can keep in touch and discuss your camping offer?
  16. Slayadragon

    Slayadragon New Member

    I'm sorry to hear that you've been feeling so bad.

    My experience with csm has varied depending on closely I've been following extreme avoidance.

    When I've gotten enough away from mold toxin in the environment, csm is fairly easy to take.

    It makes me somewhat more tired and (when i first started it) gave me sort of a drugged feeling. Drugged like being on narcotics, maybe.

    I also have gotten a lot of feelings of having a hangover. But sleep is good. I generally don't feel bad, just out of it.

    When I am around more mold than my body can handle, csm becomes much more difficult to take.

    In particular, it makes me much more reactive to any mold in the environment. So a place that's barely okay without the csm can become awful with it.

    I used to think that the reason that (say) I was getting vomiting spells was just because of the csm. But it really was as a result of the "intensification reaction."

    This is why I keep being so adamant that people consider going on a camping trip or otherwise getting away from external sources of mold before engaging in other treatments.

    Before I started practicing extreme avoidance, taking doxy or other antibiotics was impossible. The herx response was horrible.

    After extreme avoidance, I was able to take those drugs with only a mild die-off.

    Ditto the csm. I could take only 1/4 teaspoon a day after I just moved out of my house and put aside all my stuff. After extreme avoidance, 1-3 packets (close to the recommended dose) became wholly doable.

    I don't think our immune systems are in good enough shape to kill pathogens when we're still being affected by external sources of mold. Not only is it a difficult road, but the stuff comes back at the soonest opportunity.

    And I don't think our bodies like to release toxins when they're still getting external exposures. Getting the two sources at once (internal release and external exposure) is really tough on our systems.

    I'd be delighted to correspond with you via e-mail.

    Perhaps you can take a look at this document that Forebearance posted.

    Thanks for your note!


  17. rampartrange

    rampartrange New Member

    Hi Lisa !

    I just put a long post on:

    about epo and Tadalafil

  18. lynncats

    lynncats New Member

    How does one goe abut getting the dr. to think/believe that mold could "trigger" FM? Mine just looks at me like I'm crazy. When i asked about mold, she said,
    'if i could tell you that walking thru that door (pointing), casued FM, then I would". Meaning to me... who the hedck knows? anywho.. Take care


  19. rampartrange

    rampartrange New Member

    Hi Lynn,

    My wife, Margie suffers from biotoxin illness caused CFS.

    Of all the docs she has seen, only Dr. Shoemaker recognizes that mycotoxins can cause her CFS.

    From observing her telling of visits to dozens different doctors I have to conclude:

    1. In the USA, medicine is a business, to make money they have to maximize billable hours and see as many patients as possible. This business model does not allow compensation for reading and research. This is made worse by insurance companies setting constraints on how much they reimburse for a particular treatment or analysis.

    2. The business model (item #1) tends to result in average docs being really good at treating perhaps 100 problem types and great docs at treating maybe twice that. Even worse is this is a rather static set of problem types.

    3. Looks to me that if a Doc wants to buy time for reading or research, they have to raise their rates way beyond industry standards (i.e. defined by medical insurance) which would require substantial out of pocket expenses to the patient. That is clearly not the normal practice.

  20. floyd000

    floyd000 New Member

    Just thought I'd give a quick summary of my visit with Dr. Shoemaker.

    Quick review of major labs to date:

    High C4a (over 30,000)
    HLA 1-1-5 (disposition to low MSH)
    Low VIP (23)
    Relatively low VEGF (32)
    Low MSH (12)

    Very little evidence of Lyme or coinfections; do not fit "normal" CFS profile

    Before I showed up he insisted that I got an MRI/Spectroscopy in a nearby town.

    Basically Dr. Shoemaker thought that I should be able to recover. He immediately upped my CSM treatment from 1-2 packets a day to 4. He said there is no way I would get better at the current level - especially with such a high c4a.

    Said I am suffering from chronic inflammation response syndrome - ie cause of body aches. Kind of like feeling you get from flu but never goes away.

    My MRI revealed typical evidence of mold illness. He noted though that treatment should return things to normal - there was nothing horribly wrong (thankfully!!)

    He also prescribed Trental to improve circulation. One of my main complaints is poor circulation, low body temp.

    He thought Klonopin was best for sleep.

    I failed the VCS miserably so I have to pass this before moving onto to the next steps.

    Of course he took blood for other tests that I hadn't yet done. These tests take 4-6 weeks to come back. The next step is a phone consult to review these results.

    The one thing that I realized from this visit is that my current doctors may not have any idea what they are doing in regards to this illness. In fact, current treatments may be making things worse.