CFS: Forebearance's thread 33

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Aug 3, 2009.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    I hope you are all doing all right!

    I haven't been online very much because I've been homeless/on the road. I feel like I need to stay out of my home for two months or so, so I decided to go to Ojo Caliente, a hot springs in NM, for some intensive detoxing.

    To me a hot springs just sounds like it will be good for me. It's a gut instinct. My gut instincts have served me well so far on my journey toward recovery, so I'm going to keep following them.

    So I'm gradually traveling in the right direction. (Very gradually!) I'm cutting back on the detoxing while traveling. It's hard enough already. I'm even not taking my methylation supplements any more. Usually they don't bother me at all, but these days under conditions of extreme exertion, they make me more tired.

    I hope it is worth all the effort it will take me to get to this place!
    On the other hand, I don't have anything else to do for the next six weeks, so I may as well do this.

    I bought a Slyvan Sport Go and it is handling well on the road. It is nicer than a tent to sleep in, because it allows me to sleep up off the ground and it has a solid roof, floor and one solid wall. That makes it feel more secure in a rainstorm.

    But the bad thing about it is that it takes some strength to set it up. They always design these things with strong young men in mind, it seems. So I am staying at hotels along the way when I can, to save my back muscles.

  2. Waynesrhythm

    Waynesrhythm Member

    Hi Fore,

    Just wanted to wish you the very best in your travels. It doesn't sound at all easy. I sometimes look at my own health struggles and try to view them as a journey, a journey that perhaps I can turn into some kind of adventure. (Doesn't always work, but sometimes it does). :) Perhaps ou can experience some kind of adventure in it as well. It does sound like you will be in some beautiful country.

    All the Best, Wayne
  3. jenbooks13

    jenbooks13 New Member

    I think it is rare that someone who keeps feeling they are encountering mold hits wherever they go, in various homes, or campsites, indoors and outdoors, "It" and "Super-It" has simple mold illness. I do know of people exposed to stachy who when they left the stachy area, if it was that simple, felt better.

    I think that people who have ongoing battles with mold no matter where they go, have an underlying infection or significant genetic weaknesses driving their reactions. Or both. I suspect underlying lyme and babesia, since they have biotoxins, may be at the root of mold hypersensitivity for many.

    It sounds stressful to keep relocating, or throwing things out, or buying new vehicles or new "tents" or campers etc. If one were to chart one's cortisol levels in repeatedly, in a Skinnerian fashion, erratically and helplessly being overwhelmed with "mold hits" it's likely they would be chronically elevated and then spike during "hits" where one feels sick and has to flee, and/or discard valuables. Chronically elevated cortisol, if you look at Bruce McEwen's work, is unhealthy in many ways. Your blood sugar, insulin, thyroid and other systems will be affected.

    It seems to me having a safe home is very important, no matter how humble. If one *can*.

    This also sounds very expensive. If you are not working and are ill enough to for instance be on SSDI (thus not working) how do you pay for all the hotel rooms, discarded and new vehicles (or campers), homes you don't stay in, new clothes etc? This could completely deplete any savings very quickly. Perhaps it is a better idea to build a "vardo" (as on as this one couple did. It cost them $25,000 and they made it completely MCS neutral for them both. It is transportable on a trailer. Thus when the environment gets sick they move.

    Of course I suppose if you think It and Super-It are also on plumes and cover entire states then even a Vardo would not be safe.

  4. floyd000

    floyd000 New Member

    Hello Forebearance,

    I noticed from previous threads that you have high c4 and c3a, low MSH and other testing abnormalities. Just curious whether you've been tested recently to see if these tests are still out of whack. And if they've improved whether you've been able to notice improvement in the way you feel.

    I have very high c4a (32,000+), low MSH (9), kind of high MMP9 (594), low VEGF, low VIP, low DHEA, testosterone and just about every other adrenal. I am curious to see if I feel better if these tests "improve".

    Just got back HLA Dr testing. Have 1-1-5; double susceptibility to low MSH. Don't have the dreaded ones so I guess that is positive.

    Also got back Coag staph test which was negative. I am pretty surprised as according to Dr. Shoemaker 80% of people with low MSH have positive nose test. Supposedly it was done right and went to an acceptable lab.

    I am finally with a local doctor who I think has some grasp on this stuff. But planning on seeing Dr. Shoemaker anyway. Have sent in my information. Will let everyone know how that goes.

    Good luck in your travels.

  5. floyd000

    floyd000 New Member

    Just curious how others are explaining their illness.

    I have recently decided to frame it as Lyme Disease with complications. If I know someone well or they seem interested I might go into it more. LD is common where I live so people have some understanding of the difficulties this can cause. I have found that 90% of the people just can't get their head around more complicated explanations.

  6. Forebearance

    Forebearance Member

    Hi jenbooks,

    Yes, I think that anyone with CFS probably has more than simple mold illness. Dr. Shoemaker can cure people with simple mold illness, and he seems to have trouble curing people with CFS. I tend to think that those of us with CFS from mold have mold illness plus something else. Maybe a virus. Maybe Lyme.

    You're right that this is really stressful and expensive. Fashion and dignity are among the first things to go. I've been wearing clothes I would normally not ever wear. As in, colors and styles that are extremely unflattering, just because I need to be covered by something. And yeah, it would be nice to have a safe home, no matter how humble. The vardos look great!

    I keep wondering if there is another alternative to camping. Camping is really hard when you are sick. Lisa had achieved a lot of recovery before she started on her camping adventure. I'm not nearly as well.

    Is there something I am overlooking? Some vacation place where one could sleep outside, or rent a yurt? Can anybody think of another way to get to sleep outside besides going to a campground?

    Should I have looked in an MCS rental community?

    I wish there were a moldie resort that I could just go to every time my house becomes unlivable. I could keep a bag packed and in a plastic tub in the garage, and then if the house got a mold hit, I could leave for a vacation. It would be cheaper than buying camping stuff or sleeping in hotels.

    The solution I dream of is having a piece of land in a nice place, and having a screened in sleeping pavilion and an outdoor kitchen there. If I had to get out of my house, I could just live in the yard for a while. No biggie. I could still get my mail and have my normal life.


  7. Forebearance

    Forebearance Member

    Hi Wayne and Kelly and Andrew!

    Thank you so much for the good wishes! This is incredibly hard! I can't believe I thought I could drive this far. Gulp! Was I insane??? It's going to take me weeks to get to NM. Why didn't I just fly there? Because I thought I needed to have my car and my camping stuff with me. Sigh.

    Andrew, I had a second round of blood tests last fall, to see how I was doing. The MSH was worse, the C4a only slightly better, and the other tests were either the same or worse. I guess it might have been because I was going through a really stressful time, mold-wise. I had just spent six weeks in my parents' home, which bothered me. I was staying in a hotel because the townhouse I wanted to rent turned out to be suspicious, and I was waiting for another townhouse to become available. Plus I was also detoxing a lot, taking csm, etc.

    I was surprised that my MSH was so much worse. I'd like to see what it is now, if I ever get to feeling better again. Before my recent crisis happened, I was actually gradually feeling better.

    You have an interesting set of genotypes! Double 1-5! I don't know anybody else who has that one. And somehow you manage to have the symptoms of mold poisoning without the susceptible genotypes. Does that mean that you have some mold in your current environment, and if you moved or changed jobs, you'd get well?

    Or does it mean you have a Lyme infection, and could get well with antibiotics? I'm sorry my memory is fuzzy on what you have written about your situation.

    It does seem like good news that you don't have a susceptible genotype!

    I would love to hear how your appt with Dr. Shoemaker goes. He is the expert at diagnosing people, so it should be interesting.

  8. jenbooks13

    jenbooks13 New Member

    Forebearance why don't you email the Vardo folks then talk with them? I think their solution should work well. It gives you a transportable bedroom that you can make safe over time, for MCS and mold. There is no reason it should get contaminated with mold. I think camping and being a vagabond and on the run from it and super-it is unecessarily stressful. If you think you need to relocate from time to time, then this Vardo idea sounds good. Or recondition a VW camper or do something so that you can be protected and have your own environment. To be all alone and constantly having contamination episodes that require fleeing is too much stress for a mold/CFS person. Plus there may be some genetic glitch that if fixed could help you a lot. Its important to look inwards when it gets to the point where whole states, and air with so called plumes, and forests, AND homes, AND vehicles, are sources of contamination. Then you have to assume it isn't the environment exclusively. Also, given that you and Lisa continually have encounters with It and Super It that contaminate your possessions and make you sick, it's not a way to live. I thought that Vardo was pretty cool.
  9. Slayadragon

    Slayadragon New Member

    That’s interesting about your genotype, Andrew. Forebearance and I both have one mold-susceptible gene and one low-MSH gene, and both of us benefited from hormone supplementation much more than most CFS patients seem to.

    It’s thus consistent to see that your hormones are low across the board. Have you tried any supplementation?

    Forebearance, if I remember correctly, your numbers were only a little bit worse the second time you did that test. That doesn’t surprise me since you were getting a lot of mold exposure then. (I was unable to spend more than a very short time in Forebearance’s parents’ house.) The problem with CFS is that unless you get to a REALLY low level of exposure, basically nothing happens. It would have been interesting to see the numbers when you were living in your most recent apartment (before growing the mold on your patio table), but that’s okay. Hopefully after a month or two on your current adventure, you’ll be feeling good and can have it done.

    I suppose I should have my own numbers done, just so that I can tell people what they are. The problem with the C4a is that most labs are contaminated to the point that it would likely push the number up to above what I’m getting a lot of the time. I wish I could get the blood drawn in the wilderness!

    Erik said that the chairs in the lab that he visited were especially contaminated, which seems to often be the case with chairs in medical offices (especially of doctors who specialize in CFS). I hate to imagine what the chairs in Dr. Shoemaker’s office are like! I wonder just how bad his office in general is, from the cross-contamination of people bringing the mold from their current or former homes on their clothing. Insofar as people are successfully pursuing extreme avoidance and still really sensitive, his office might well be wholly intolerable.

    Of course, now the labs likely wouldn’t be worse than the exposure that I’m getting on a regular basis from my car. I’d imagine my scores now are slightly elevated, hopefully not too much. What the tests said would make absolutely no difference in terms of what I’m doing, but (especially since I have very good test insurance) perhaps I will get it done soon anyway.

    I’m not at all convinced that it’s easier to get better from CFS if you don’t have the multisusceptible genotype. I don’t think that my experience detoxing was any easier than Erik’s, for instance. (He has one multi gene and one mold gene.) I tend to think that people with the multi genes are more likely to get CFS to begin with, but once you’ve got “real” CFS, that makes the genotype much less relevant. (It may be the virus or other downstream effects that make the difference, I think.) I’d like to hear what Dr. Shoemaker thinks though.

    I think that it’s best to tell people an abbreviated part of the disease that’s consistent with the approach that you’re following. I don’t think that my only problem in mold illness and am treating other components too, but “a peanut-allergy level sensitivity to toxic mold” is consistent with what I’m doing and (for people who care to listen) makes sense when I explain it.

    Rarely do I even mention to people that I’m sick though. Generally it’s possible to gloss over that fact if you stretch the truth even a tiny bit. In my case, going on an extended road trip to work on a book (implied: “midlife crisis”) is not just an acceptable story but one that makes most people express the desire to do that themselves. It’s only CFS patients who think of my adventure as in any way punishing, regardless of whether they know about the mold. Seriously!

    In your case, Lyme disease with complications (or just plain Lyme disease) sounds like a good choice, insofar as you choose to tell people what you have.

    Forebearance, I looked at a yurt when I was driving through Big Sur. My MCS was flaring somewhat as a result of the mold exposure I was getting (apparently outside mold following last year’s forest fires), and the yurt was as intolerable from a chemical standpoint as anywhere I’ve ever been. I find it hard to imagine it would ever die down enough for anyone with even vague MCS to be able to use it. Unless you have a creative way to make it happen??
    The yurt did feel fine in terms of mold (though since the outside air there had a mold problem it was hard to know if it was perfect). That is consistent with my belief that buildings with timber frame and no drywall probably are okay when it comes to not growing whatever sort of toxic mold bothers me. I’ve yet to encounter a single building without drywall that’s bothered me, actually. (The only exception was a cave--if you count that as a building--in the Mojave National Preserve, which gave me a “regular-bad mold” reaction. I’m still puzzling over that one.)

    Of course, if you create a situation where water clings to the wood (as Fore did on her patio table) and then plant the right kind of mold spores on it, you may well create a problem! That’s a situation that likely could be avoided with even a little bit of attention though.

    My scattered impression of the MCS community is that they will be of no help whatsoever to us, since mold is totally off the radar screen for most of those folks. And since I agree with Erik that (at least for that synonymous with MCS?) chemical sensitivities only will decrease if mold is scrupulously avoided, the likelihood that those folks will get anywhere in terms of decreasing their reactivity seems to me pretty low.

    What we really need is a halfway type community for people to go for a while upon moving out of their homes. It’s becoming increasingly clear to me that if people can get to a really pristine location for a set period of time (maybe a year), it’s possible to get both mold and chemical reactivity way down so that a much wider range of housing options can be tolerated. Until people get mold exposures way down, they’re not going to get any detox. And until people get a lot of detox, they’re not going to be able to tolerate much mold.

    Erik and his former girlfriend got own reactivity way down over a period of a couple of years of really stringent avoidance, even without csm. (She’s currently living a wholly normal life, and his is a whole lot more normal than people think.) My own reactivity has gone down tremendously just over a period of five months, with a lot of csm. I’m not pipe dreaming the idea that I’ll be able to re-enter a “real life” of some sort fairly soon; I’m almost there already.

    Starting by trying to set up a “normal life” thus seems to me a huge mistake. That’s what I did, and that’s where the money went! This little camping trip of mine has cost an very small amount of money in comparison. (Especially if you consider that the Toyota 4Runner and Casita I bought both have extremely good resale value. It’s not like selling a house or attempting to break a lease: if they get too contaminated for me to handle, I can just sell them for a few thousand dollars less than I paid and move on.) And it’s my belief now that I pretty much wasted a whole year doing this only halfway. It’s those last few mold molecules that make the difference!

    It is true that people with severe CFS usually don’t have enough energy to set off on a full-time camping trip on their own. Ideally there would be somewhere in the Godforsaken desert that would have all the stuff already set up and support staff (including a “professional pamperer”/nurse) to do all the work. Then people could just lie around, move toward wellness and learn about what camping is about (actually not that hard). If they did _that_, I think that most people would be in a position where they actually could take care of themselves within months.

    I suppose that what would be needed to get that going is seed money, to guarantee the labor costs and basic supplies for the first go-around. In addition to the support staff, you need some people who are sensitive to mold to set it up so there’s not any inadvertent contamination of stuff. The problem here is that as people move toward wellness, their ability to find toxic mold goes down a lot. I’m at the point now where I’d be no use in this task whatsoever! But for people who are halfway there, this could be a good opportunity to make some money.

    So if someone was going to spend an entire year at such a camp, I don’t think it would have to be that expensive. Without buildings or land costs (just staying in campgrounds), but with support staff and food etc., I’m thinking.....maybe $30,000 for the whole year? Considering how much money can be wasted doing this on your own, that seems wholly doable. Especially if there was no need for a commitment of more than a couple of months upfront.

    If you’ve got the seed money, that is. I’m thinking that maybe $100,000 would allow a setup for an initial half-dozen people. That’s not that much in the scheme of things either.

    I really think we’d want tents at this Mold Warrior place. Buildings sometimes are tolerable, but never as good as a good tent. Plus the weather in the Godforsaken desert is variable. You don’t want to be in Death Valley in summertime, but in winter you basically don’t want to be anywhere else. So having the whole thing be movable seems to me to be essential, regardless of whether an area is always really pristine. Plus, maybe it’s just me, but sitting in one place in the desert for a whole year would get REALLY boring, especially as people move toward wellness. Having the group move to a few different places would be much more fun.

    And then there's the random contamination factor. Fore's problem started with one bad object (the fan in her temp hotel), for instance. That could happen no matter what kind of building you've got or where you're at. Once you've got permanent buildings, the downside of having that happen is REALLY large. That's the thing that would really stress me out. If you've got tents and that happens, you can just get rid of them and start over. Can you imagine spending a lot of seed money on a building with the thought that it might be unusable in a blink of an eye? Nobody in their right mind would do that.

    Once you get clear and the reactivity goes down, it’s time to pick a permanent place to live and set up a more permanent housing arrangement. Because what most of us want, I think, is to live a maximally normal life in the _long run_. I mean, isn’t it?

    Especially since after the hell of CFS, sitting out in the desert feeling even sort of okay (which people will almost immediately if their environment is clear enough) is a huge improvement already. Quite frankly, regardless of the “stress” of the contamination, the past five months have been by far the best time since I’ve gotten ill and possibly the best one of my whole life.

    It’s hard to explain how great feeling well is to people who are still sick. If I could do that, anybody who could possibly do this would proceed with it in a heartbeat.

    Love, Lisa
    [This Message was Edited on 08/05/2009]
  10. jenbooks13

    jenbooks13 New Member

    First of all, a Toyota 4Runner starts at $30,000 (and higher with bells and whistles). You say resale value is good. Well fine but that means a person already has to have $30,000 to spare for quite a while...something sturdy and big and clean enough to carry the portable household. Why do you think this is feasible?

    Secondly, except for people on SSDI who are ill but not *too* ill to uproot and travel, this camp idea is not feasible for most. If you have young kids, part-time or full-time work, or are really sick, it's all not feasible.

    Thirdly, not everybody is going to get well just with avoidance. Rich posted further results of Dr. Nathan's trial--after 6 mos on Simplified Protocol they had more individualized treatment with input from Yasko and others. A few had mold issues and went on binders, some had lyme and went on Buhner herbs etc. A few got really well, others simply improved. Simple avoidance would not get rid of my lyme disease for instance, and mold was not present in large amounts before demolition/floods in my building in 2005 onward. Chelating mercury and improving methyhlation is more likely to bring me results, I suspect. The idea that people would know that toxic mold was the only and primary cause of their illness is not realistic; so they'd do the avoidance experiment and some would stay the same or get worse from the stress, some would improve somewhat, and some portion would improve a lot. So who is up for the experiment?

    On there is a posting for Quail Haven--she's been trying to get an MCS community going there for quite some time and no takers. I know there are MCSers ina n informal community in the Snowflake Arizona area.

    You really have to be somewhat functional, have enough $$ to earn nothing for a year *and* spend $30-50000, and be footloose and fancy free: no kids to take care of, nor sick parents, nor meaningful well paid work that cannot be thrown out the window for an experiment.

    You were able to do it because you were relatively wealthy and had no children and were willing to part with your relationship for the time being. You also through no fault of your own at all had not worked in years, but should realize that means you also had no work to give up. At the same time you were recovered enough, again thru persistence on your part and good health insurance and financial means, to undertake your experience. Most people are not in that position.

    You say your reactivity is going down but I'm confused by that since you also talk about mold hits, how you can't be in a Yurt, can't be in any building with drywall, and your Toyota was contaminated to the point where you got a Casita. How far has the reactivity gone down?

    I believe you feel better than you have in many many years, and I believe you've had a good time. Your personality seems to thrive on the situation and that's good for you. In contrast Forebearance is having a very hard time and at points of complete despair at times when she posts. So you need to think about how hard this is for most people. I assume she has financial means too, since she just bought a $6000 tent/camper thing and is staying in hotels and is not working.

    I think there are many inherent contradictions in the idea of a mold warrior camp etc. I also think its important to note that others who have been flattened by mold, like Sheryl whom I mentioned, completely recovered with homeopathics and ozonating her home. Hiking, kayaking, working, tending to her children, off on vacation for the rest of the month. Etc.

    One of the issues with this wastebasket "CFS/FM/ME/Chronic Lyme/Toxic Mold" is that many people arrived at similar points because of different triggers. Each will have to experiment with their own way but the likelihood that a substantial number have the financial means, the life freedom and lack of work or personal and family ties, the emotional fortitude, and the singular response to mold as the keystone-in-the-arch low. It's probably a small portion of people. That is my opinion only and I could be all wrong. I am not judging what anybody does by the way. Everybody has a right to try what they can afford to and want to try as long as they wish.
    [This Message was Edited on 08/05/2009]
  11. Slayadragon

    Slayadragon New Member

    I talked for about 30 minutes with the woman from Quail Haven and found that not only did she know nothing about toxic mold, she completely dismissed my comments that it might be relevant. I thus would not recommend this as a starting point.

    I used to say that mold avoidance was the worst possible way to get well from CFS, but that unfortunately (at least for me) none of the other ways worked. A minor drawback!

    Now I think that mold avoidance is a terrific way to get well from CFS. I never imagined I could pursue this sort of life for a second. I used to think that people who went camping even for one night for fun were insane. I was horrified when Erik would talk about spending any time in a tent (he never recommended LIVING in a tent) and agreed to sleep in a tent during my visit to see him only to pry information out of him.

    Feeling really well--better than even before I got sick--has changed everything. I find it hard to imagine that others who are sunk in CFS hell would not agree with me, if they remembered what it was like to feel even decent.

    Undoubtedly some people can get well from CFS-like illnesses without pursuing extreme avoidance. I likely could have, had I addressed the mold earlier. The longer that people procrastinate doing this, and the less well they do it when they do pursue it, the more extreme they're going to have to be when/if they finally pursue it in a serious way.

    I certainly wouldn't advise people to do anything more extreme than they need to to get well. For some people, moderate avoidance is plenty. I'm happy for them. When I pursued that level of avoidance, I made very little progress at all.

    I do not believe there are subgroups to this illness. I believe that all of us are affected by the exact same constellation of factors (viruses, Lyme, mold, other toxins, downstream stuff like candida) and that true wellness will be achieved in the same way for all of us.

    There are a few scattered cases of people who have gotten significantly better without actively pursuing mold avoidance, but in looking closely at their histories I've thus far noted that they've inadvertently pursued avoidance to some extent. And most of these folks have moved toward wellness with great difficulty.....e.g. taking years to work up to 300 mg of doxy for Lyme, while I was able to do that within a week after pursuing extreme avoidance. (Before pursuing extreme avoidance, I was unable to take only 15 mg of it.)

    Certainly not everyone can afford to pursue extreme avoidance. That has nothing to do with whether it's the best or only way to true wellness for those of us who are really sick though.

    I'm not going to try to persuade anyone that my reactivity is going down or that my current symptoms are not being caused by mold. This is no different than trying to persuade normal people that I'm "really sick," that air fresheners "really bother me" or anything else of the sort. I gave up on that years ago. If people don't believe me when I talk about the components of my illness, that's their concern.

    The more I talk about mold avoidance online, the more sympathetic I become toward Erik. People attacked him for years, using the same arguments that I've been hearing recently. He continued to talk about it online because he felt that it was his destiny to let people know about the stuff; he certainly had plenty of other things he could have been doing instead.

    I've continued to talk about mold avoidance online because I think it's my moral duty to share my experiences. Whether anyone believes me or wants to follow my path is up to them.

  12. illroy

    illroy Member

    I've been trying to follow all the threads here about mold and mold avoidance this year. Until now there has been a respectful discussion with interesting information and a refreshing openness of experiences. I hope that won't now be destroyed.

  13. jenbooks13

    jenbooks13 New Member

    There are many roads to partial or complete wellness and not one of them will consistently work for everybody. Radical mold avoidance, which seems to entail separating from home, family, work, sleeping in tents, vacating clothes, possessions, vehicles, dwellings, when contaminated, sounds very stressful. Other aspects of life may have prior commitments that bring value, such as meaningful work, young children, family and extended family. This endeavor sounds as if it requires a substantial financial buffer and personal flexibility/freedom. Like most "treatments" each person will have their own genetic vulnerabilities, their own life history of pathogens and environmental toxins, their own stress levels etc. Before people embark on any protocol that is extreme they need to consider honestly and thoughtfully the risks involved. Many of us have tried things that cost us in health and financially. I've learned the watch and wait approach is best, then I learn from others and the risks eventually become apparent. Forebearance is brave but I feel badly that she is exhausted, driving alone, unable to use her new camper. It is fair to say I am not sure this way of life is overall beneficial for most, longterm or shortterm.
  14. Slayadragon

    Slayadragon New Member

    I agree with everything you wrote in that last post.

    Best, Lisa
  15. jenbooks13

    jenbooks13 New Member

    It will be interesting to say the least to see in what way you re-enter society (ie a home in the suburbs or city? Or build your own in a nice pristine place?) and work and how healthy you feel. Obviously we probably need another year to really tell about that. So your reports will be interesting.

    I am considering whether to purchase a heat recovery ventilator (window unit). It's expensive. One of the guys on sickbuildings who had to vacate his moldy west coast apartment and move to the east coast with his wife, got one for their house. The question is, if the mold situation is not highly toxic (ie bad stachy--as in your situation being distributed thru an HVAC for years, very unfortunate) but moderately so to a person whose system is down from other infections, poor genetics etc, is there a way to get air circulation patterns such that all year long, fresh air is circulating? Because mold spores themselves need to land somewhere. They like humidity and relatively static conditions. Two Holmes window fans in warmer months in my windows are sufficient to make my place much much better. On extremely humid days such as 80% or higher, I feel crappy inside anyway, suggesting that at that point, the humidity is so high it overwhelms the air circulation.

    I'm hesitant about the HRV because its expensive, has to be retrofitted for my window, may have new parts that I react to with my MCS *and* may not do the trick. Also a good friend who is a green builder and is currently designing a building of 20 units in the city, each with the top German energy recovery ventilators (they work summer and winter) built into cabinets above the fridges and ventilating straight to the outside--says that the claims for heat recovery are exaggerated. Many recover only 50% of heat (they pull indoor air out and bring outdoor air in thru separate fan mechanisms linked by some kind of membrane that transfers the heat so the outdoor winter air is warmed before it comes in). So the claim that 90% of heat is recovered is exaggerated. Thus on a 20 degree night I might be getting 40 degree air and it would be pretty dang cold.

    I have also wondered if denny foil/denny tape in areas that may be musty could stop mold spores. For instance closets. Denny foil and tape do provide a vapor barrier. These are just some ideas I've had. Or maybe reflectix, which that woman used on her tent. Theoretically you could even line a whole room, as some people with MCS have done when rooms were toxic because of wallpaper or paint or whatever.

    Sounds a bit nuts but really its not. Suppose you lined a room in reflectix and then put a pretty organic cotton fabric over it like wall hangings and had a heat recovery ventilator in your apartment or home that did complete air exchange every 2 hours. You might get a moderate mold problem that was a contributor to poor health, down to almost nothing without having to uproot yourself and be a lone pool ball zinging and zanging around the country (which as I said, could be harder for some of us than others).
  16. Waynesrhythm

    Waynesrhythm Member

    Hi All,

    Years ago when I continued to think I may perhaps be able to work again some day, I looked into becoming a distributor for a company that sold ozone machines (Aran Aqua). They apparently had distributors who would work directly with builders/contractors to install their machines in the heart of the ventilation system, ensuring that ozone was constantly being circulated through the ducts and the rest of the house. I'm actually feeling fairly scrambled here this morning, so am not sure whether this bit of information is relevant to the discussion at hand. But thought I'd offer it in case it was.

    Lisa, I'm intrigued by your experience, and what you've been able to accomplish for yourself. But I really don't know what to do with this information. I don't have the wherewithall, both financially and cognitively, to do what you're doing. Nor do I have a strong sense one way or another as to whether it would be appropriate for my own situation, even if I could pull it off.

    I guess I'll be content to continue with my saunas (which supposedly are at least helpful for addressing mold issues) for the time being, and see what kind of improvements are in store for me (I've already had some good results).

    Forebearance, RE: ""Is there something I am overlooking? Some vacation place where one could sleep outside, or rent a yurt? Can anybody think of another way to get to sleep outside besides going to a campground?""

    For what it's worth, if I was in your situation, wanting to sleep outside and pursue an extreme mold avoidance lifestyle, I would probably try to do it right here in southern Oregon where I live. This is a relatively rural area with very large tracts of national forest where a person can camp legally for two weeks at a time.

    It only takes me a few minutes to get into some pretty quiet areas that feel quite remote. This close proximity of remote areas to civilization assures access to some pretty basic needs. In the case of Ashland, a $40/month membership at a health spa could get you showers, saunas, oxygen concentrator, lymph drainage machines, etc. Plus lots of good organic produce at relatively good prices. Plus a remarkable array of alternative health care practitioners and interesting people of all sorts.

    That's just a scenario of something that l would probably pursue, given my own familiarity with my current surroundings. I just don't have the insights into extreme mold avoidance that may not necessarily make this or a similar scenario feasible for you. But thought I'd offer it up for your consideration.

    Forebearance, I just want you to know I'm wishing you the very best as you move forward on this most unlikely of journey of yours.

    All the Best, Wayne[This Message was Edited on 08/06/2009]
  17. floyd000

    floyd000 New Member

    Yeah I thought that genotype might be a little different. I wonder if I'll have as hard a time increasing the MSH as some people have getting rid of mold from their system.

    I really wonder about where I had the "smoking gun" exposure to mold. As far as I can tell, I've been never been exposed to extremely high levels of mold. I've worked and lived in different locations with no huge change in status.

    I wonder though whether I still have a methylation issue. I've started looking at Rich's research.

    Has anyone heard of Dr. Patricia Kane? Apparently she is an expert in nutrition and biochemistry. She will be visiting my primary's office this month and he may arrange for her to review my "case". If that happens I'll let you all know what happens.

    Forebearance as refresher...I was originally diagnosed with CFS but that was put in question to some extent by Dr. Anthony Komaroff a relatively well known CFS researcher at Harvard Medical School and Brigham and Women's in Boston. His focus is mostly on HHV-6 which I have a high anti-bodies for. He didn't think I was a clear cut CFS case but I am still part of his research group.

    Next I was diagnosed with Mycotoxosis. Then shortly afterward I was diagnosed with Lyme Disease by Dr. Phillips in Wilton, CT. I've taken tons of anti-biotics with no apparent benefit; except maybe a damaged liver :-( After a while I got a Lyme Doc closer to home. Unfortunately her practice was shut down by a local infectious disease colleague - not very collegial!

    I was referred to another local doctor who specializes in chronic diseases. He was the one who ran the "helpful" tests and was quite certain that mold is my underlying problem. I definitely agree as I know certain environments are beneficial and certain ones make me feel worse. Unlike many, though, I am almost always better in any kind of air conditioned environment.
  18. Slayadragon

    Slayadragon New Member

    Hi Wayne,

    Your concern is precisely why Erik stopped focusing much attention on helping people to pursue extreme avoidance over the Internet. Most people aren’t in a position to do it, very few would want to do it even if they were in that position, and pulling it off (especially without in-person training) is extremely hard.

    The few people who have got some in-person training and followed all of his instructions as scrupulously as they could (e.g. his former girlfriend, Jonathan Wright, me) have done extremely well. Those people who thus far have followed his instructions but in a more moderate or less scrupulous way (e.g. Khalyal, Forebearance) have experienced improvements significant enough to keep pursuing this even though it hasn’t been a total solution for them. As far as I know, nobody’s tried it in even a moderate way (again following his instructions!) and gotten no improvements.

    I thus feel increasingly strongly that this is for real. Certainly it’s still experimental though.

    The junction that Forebearance is at is by far the most difficult one of the whole experience. It’s where I was at back in February, when my Las Cruces roommate’s house went intolerably moldy and I moved out into a tent. I generally am not one to seek out emotional support, but I certainly welcomed it during that time!

    So giving Forebearance as much support as we can during this time likely is a good thing. She’s pretty strong and competent though, so I have a good deal of confidence that she will make the decisions that are right for her.

    Anyway, here are some thoughts that I have with regard to addressing mold illness in a less extreme way.

    1. If people are living in a really moldy home, they should get out immediately and find somewhere else to live.

    This is crucial because additional time spent in such an environment will cause reactivity to increase. This means that not only will long-term health be lower, but avoidance will need to be even more scrupulous if it eventually is pursued. If I’d gotten out of my house even a year earlier, my life now would be a whole lot easier. Decreasing reactivity through detox seems to be possible, but it’s really hard.

    The problem here is figuring out whether the home is moldy, since remediator’s tests (air tests especially) are basically worthless. The only sure way to determine this is by getting away from the suspect place for a while, then returning to it and gauging the reaction. If health declines upon return, this is a strong signal that it’s a real problem.

    I wouldn’t necessarily recommend going out to the godforsaken desert for this exercise. This may make CFS sufferers so sensitive that ANY dwelling becomes intolerable. Unless folks are prepared to move out to a tent, this can be too much.

    A less risky strategy is to try spending a week in a friend’s or relative’s place. Try to pick somewhere that has a good feel to it though. And certainly don’t pick a place where anybody living there has an illness that could be mold related (e.g. CFS, autism, ADHD, depression, anxiety, MS, unexplained lethargy)!

    A hotel is a far worse alternative, since many hotels have very severe toxic mold problems. And don’t pick a place in a location that is suspect with regard to outdoor mold (see below).

    No current belongings should be taken on this trip. Buy new clothes (or borrow some from a really healthy friend). Leave behind the computer or (if you have a laptop) use it in a public place where it won’t affect the dwelling.

    Doing these basic steps won’t be enough to get a CFS sufferer really well. It might not produce any improvements at all. But if a home is really bad, that should become clear upon the return. Unless you get really unlucky and choose a place that also is really bad, of course.

    2. If current health is declining, a serious mold problem in either the home or the outside air should be suspected and pursued.

    3. If a house is found to be really moldy and a move is made, possessions should not be taken to the new place.

    Taking along really contaminated possessions is not much better than not moving at all. Clothes and bedding are particularly problematic, but no item is good.

    If you feel you absolutely must take old stuff to a new environment, be sure to wash it carefully. Washed items still will make CFS sufferers sick (the mold toxin bonds permanently to stuff), but unwashed items will contaminate the new environment (making it problematic even if the old stuff is later removed).

    This means not bringing along things like books that can’t be washed. It’s better not to bring electronics items too, since the insides can’t be washed.

    4. People living in mold “hot spots” should seriously consider moving to another area.

    Re-reading Osler’s Web in the context of the supermold, I’m now convinced that anywhere that a) ever has had a CFS “epidemic,” b) has a high incidence of CFS, c) has a strong CFS support group, or d) has a number of people on groups like ProHealth who are super sick from CFS is not a good place for anyone with this illness to live.

    Again, moving isn’t likely to create big gains in itself. But it may prevent a decline, and it also may allow other treatments of whatever sort to be more successful.

    One place that no CFS sufferer should live, for instance, is Lake Tahoe. Erik is insane for remaining in that place. It’s a real testament to his mold-avoidance skills that he’s able to survive there. His life would be a whole lot easier elsewhere, and he very well might have gotten to the point (after 12 years of extreme avoidance) where he hardly would have to think about mold at all.

    Other clearly very bad places for CFS sufferers are the entire states of Texas and Louisiana. I have strong suspicions that the entire Bay Area and large chunks of the rest of California are really bad as well.

    The vast majority of cities are bad in terms of toxic mold, especially in winters. Those that are next to bodies of water and not blocked by mountains on the other sides (e.g. Chicago, NYC, San Diego, Seattle) may be a bit better, especially in summers.

    I’ve heard that Alaska is particularly bad, due in part to the weather also to the presence of a lot of poorly constructed, flat-roofed buildings that leak under the weight of the great deal of snow.

    Cities surrounded by mountains (e.g. Tucson, Phoenix, Santa Fe, Los Angeles, Denver) tend to be especially bad.

    My tentative hypothesis is that places that have _ever_ had forest fires that were addressed with chemicals might be problematic, but that’s far from certain.

    Cities with a lot of “green space” tend to be a bit better. NYC always has felt pretty good to me, and Central Park might contribute to that. Santa Fe (which has no green stuff at all) is horrid.

    Based on my experiences living for a summer in England and on the large number of very ill CFS sufferers there, I would suggest that anyone with CFS/ME should make every effort to get out of that country.

    Obviously moving to another geographic area is a challenge. Especially for people who are doing really poorly though, it may be worthwhile.

    5. Finding a place outside that is especially clear of toxic mold and spending as much time there as possible is really important.

    Erik calls this “breaking the response.” If people can get their mold levels way down for a significant period of time on a regular basis, their ability to tolerate mold during the rest of the time is much higher.

    I did this instinctively during the last couple of months living in my moldy house. Several days a week, I drove 20 minutes to the Chicago Botanic Garden and spent a couple of hours there. Despite the fact that I barely wanted to walk down half a flight of stairs in the house, I usually walked around for an hour or more at the garden. This should have said something to me, but I was too out of it to reflect on it.

    After I started pursuing extreme avoidance, I found that the garden was by far the clearest place I could find in the whole city. My going there regularly during those last months, when I was doing nothing else, obviously was a real self-preservation instinct.

    After I went to see Erik, I spent about two months back in the Chicago suburbs. I spent a couple of hours a day at the Botanic Garden, an activity that I thought of as recharging my batteries. Living in the city during that time was stressful, but I remained pretty functional until winter arrived.

    A good place likely will have a lot of “green stuff.” Areas that are at a comparatively high elevation (even if it’s just a few hundred feet higher than the rest of the area) often are much better.

    Try different places and see which ones make you feel good. The ability to “exercise” (whatever that means for you) is an even better signal that a place is good.

    Once you find a good place, try to visit there regularly (daily if possible). Stay for at least an hour straight, preferably longer. The system rarely calms down in less time than that.

    Try to spend as much time outside as possible in general. Outdoor seating at restaurants generally is preferable to being inside, for example.

    6. Spend more time in buildings that feel good and avoid ones that feel bad.

    If a building feels bad, get out immediately! A short time in a really bad building can make a CFS sufferer have a downturn for days.

    If buildings feel better than the living space, spending time in them may be helpful.

    “Sick Building Syndrome” designed buildings (large HVAC systems, no windows that open) tend to be very bad. Conventional fancy hotels, enclosed shopping centers, and modern office buildings are examples.

    Home Depot is quite bad (their merchandise is really contaminated). Wal-Mart’s merchandise is pretty bad too. (One piece of evidence that my reactivity is going down is that I now can spend long periods of time at Wal-Mart and short ones at Home Depot without being affected.)

    Panera and Starbucks usually are good. Rumor has it that Indian casinos can be good, though I’ve not visited them. Newer Hampton Inns (built in 2004 or later) are quite good, if you need to travel.

    I’ve found few fast food restaurants that are bad in terms of mold. Oddly, big casual dining restaurants (e.g. Cheesecake Factory) sometimes are quite bad. I’ve yet to encounter a Cracker Barrel that’s been problematic.

    Start paying attention to how you feel while you’re in different places as well as afterwards. This will give you a sense of what mold exposures feel like.

    If you go even for a moment into a building that feels really bad, “decontamination” can be extremely helpful. Ideally, you would take a shower (including rinsing hair) and change clothes. I often just change my shirt and dump a bottle of water over my hair though.

    Without decontaminating, it’s as if you’re still in the moldy building for hours after you leave it. A short exposure to a very bad place is problematic, but a longer exposure to the bad stuff can be catastrophic.

    7. Periodically sleeping or vacationing in places that feel really good is helpful long-term.

    Occasional or regular trips camping in the wilderness can be a really good thing. If you sleep more soundly than usual, that’s a good sign that the place you’re visiting is clear and that your tent/bedding or RV is okay.

    If you vacation in a place and feel good, consider returning.

    If you feel good during a visit to a friend or family member, try to get an invitation to return.

    8. Make the sleeping space as mold-free as possible.

    Getting as clear as possible while sleeping is important.

    Especially if your mold sensitivity is not developed, you likely will bring items into your home that are contaminated. A bedroom crammed with a lot of stuff likely will have a number of these items and thus cause sleep to be less refreshing.

    Good ventilation in the sleeping space is also really important.

    9. Pay attention to laundry facilities.

    If you’re using a public facility, spend some time there and see how it feels.

    At home, spend some time with your face against the open dryer chamber and see how you feel.

    If the laundry facility feels really bad, try to find somewhere that feels better to do laundry.

    If the laundry facility feels moderately bad, you can still wash your clothes in the washer. Hanging clothes (especially shirts and bedding) to dry rather than putting them through the dryer may be important though.

    (The dryer acts as a filter, depositing a disproportionate amount of any mold in the environment on the clothes.)

    10. Consider cautiously pursuing detox.

    It’s my strong belief that our bodies are disinclined to consider detox when they are still being exposed to much mold.

    Aggressive pursuit of detox (e.g. taking much cholestyramine) is likely to be unsuccessful. Constipation seems to be a functional response that the body takes to keep too much toxin from being excreted at once. Insofar as constipation is treated with laxatives of whatever sort, a lot of people get intolerably sick.

    Mild detox may be tolerated, but I personally think that this should only be done if it makes people feel only moderately worse. If it makes people feel a lot worse, it’s probably too much.

    11. Consider seeing Dr. Shoemaker or another doctor who treats mold illness, but only if this can be done comfortably in terms of effort and money.

    I’ve yet to see any CFS patients make more than a tiny bit of progress as a result of being treated by these doctors. If anyone has examples of patients who have made a lot of progress, please let me know.

    Dr. Shoemaker seems to have some hope for VIP being helpful for CFS patients. Whether that actually will pan out for people remains to be seen.

    People pursuing extreme avoidance may be helped by Dr. Shoemaker’s treatments. I myself am taking 1-3 packets of csm per day and making a lot of progress with that. But with the exception of getting VIP and csm prescriptions, I’m not sure that these patients will benefit much from seeing these doctors either.

    Obviously some people feel comforted when they are under a doctor’s care, and that’s fine. Getting the test results is interesting. But if money or energy is a limiting factor (as it is for most of us!), conserving those resources and working on decreasing mold exposures likely (I believe) will yield better results.

    12. Get your HVAC ducts cleaned.

    Toxic mold actually can grow in HVAC systems, which is part of why SBS designed buildings are so bad. Hopefully you don’t have that problem though! If you do, it’s time to move.

    The clothing fibers and hairs that accumulate in ducts can be contaminated from previous visits to bad places though. Getting the ducts cleaned will thus reduce the amount of toxin in the air.

    Again, none of these things in themselves are likely to provide a CFS sufferer with much increased wellness.

    What they may do, though, is take the bottom off the lows and increase the number of “good days.” They also may stop a downward slide, allow other treatments to work better, and serve as a stepping stone to more concerted avoidance.

    I’ll see if I can think of some more suggestions to add.

    Best, Lisa

    [This Message was Edited on 08/07/2009]
  19. Waynesrhythm

    Waynesrhythm Member

    Hi again Lisa,

    Thanks for all the information and insights you provided. I will most certainly be keeping these in mind. Reading about yours and Forbearance's experiences has me thinking about trying to make another trip back to the midwest this fall. I've made this trip annually for about he past ten years, but was feeling I could no longer do it because of deteriorating abilities.

    But I'm now intrigued to try it again, probably taking much longer to do it, and monitor carefully how I feel along the way. Traveling in the fall with my own 15' self-contained lightweight camper might be an opportunity to delve a little more into my reactions to different areas along the way. Moab would be a possibility for me to consider as well.

    In the mean time, I guess I'm still leaning toward seeing if there is some type of energetic regimen I might be able to figure out for myself. I keep coming back to the notion that I feel most of my health issues (and reactivity) is caused primarily by my bioelectric rhythms having become disrupted.

    I can't say I could give you a concise definition of what I feel my bioelectric rhythms are, but it's my own way of describing a part of my own circuitry that feels discombobulated. I could also add disconnected, somewhat flailing, sometimes scrambled, and altogether disconcerting. In that vein, I seem to remember you've had some successful experience with NAET in the past. If so, did you ever try using it with your mold reactivity?

    One last thing. I'm in the process of migrating over toward Cort Johnson's new message board. It strikes me as being more open, tolerant and accepting of all different kinds of perspectives and ideas. I feel that much of the negativity on this board has caused many people to leave, or post little out of fear of repercussions. In a sense, it (negativity) seems to have significantly damaged the "fabric" of this board. Not nearly so welcoming as in the past.

    So I may not make it over here as often in the future. If you would want to contact me for any reason, you can find me under the username of "Wayne" on this new board. They even have private messaging features that are very convenient. I've gotten some private messages from people who have also confided about their fear of posting openly any more on this board.

    Thank you again for taking the time to post all of your insightful tips; I imagine many of them were garnered by difficult experiences. I will be certainly keeping them in mind, and have already saved your above post as a favorite.

    All the Best in your continuing journey, Wayne[This Message was Edited on 08/06/2009]
  20. mbofov

    mbofov Active Member

    On the road again ..... (I love road trips but not the same when you are fleeing mold!)

    I just had a thought - I live in Lancaster, California. Generally it is very dry here. Rainfall is almost nonexistent. The summers can get quite hot. It's high desert. It's just dry. I have seen no mold in my home (I have a mobile home).

    I don't know where your home is and what your ties there are, but could you relocate to a hot dry climate where mold does not thrive? That might work better than getting uprooted etc.

    California has several hot dry areas - Palm Springs communities (pricey), Lancaster (cheap - low income), Yucca Valley, remote and beautiful.

    And of course there's Utah, Arizona, etc.

    Re detoxing: I've been reading about far infrared saunas and they are supposed to be excellent for detoxing (at least that's what their publicity says ....) There are portable ones you can have in your home. Another alternative to driving to far away places if you wanted.

    Well, I hope your trip goes well and the detoxing too!

    Take care -