Invest in ME Conference 12: First Class in Every Way
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Open Question on Mold and ME Recovery

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by MACO1234, Feb 11, 2017.

  1. MACO1234

    MACO1234

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    Hello everyone, I have a question about a major life decision that I'm hoping to get some feedback on. I have had a severe mold allergy (with milder corresponding MCS more recently) and CFS/ME for over 10 years, and am now looking to finally relocate to a truly clean environment where I can hopefully heal. Below I will give some more details about my history, though it is not absolutely necessary for the question of what to do now. I'll include a TLDR at the end of the next few paragraphs if you prefer to skip. If any info that could be relevant is missing feel free to ask before giving your thoughts on the question. Thanks, here goes!

    I am a 26 year old male. I have suffered from CFS/ME for a bit over 10 years. It was triggered by my time in an extremely moldy rental as a child. I then went to a middle school which was also toxic, and became so ill that home schooling was necessary. From that time I was largely home bound with varying degrees of poor health. Then, a couple years ago, my condition took a turn for the worse. My fatigue escalated to the point that taking any classes in college (from home due to my mold allergy) was very difficult. My brain fog was also worsening, as was my long standing IBS and pain. I also began noticing MCS that was not there before.

    I began working with a new naturopath and moved through most of the usual treatments. Some would help for a while, but for every step forward I seemed to take two back. Hypothyroidism, mitochondrial dysfunction, heavy metals and detox -- we identified and treated those and more, but my core health was not improving. Up to this point I had been living in the same house with my parents which we moved to after being in the toxic house for so long. I never reacted to it in an obvious way, and as far as we knew there was no mold issue. However, my naturopath had the idea of testing some inflammation indicator in my next round of blood work (the name escapes me). To my surprise it came back quite high -- I was reacting to my house.

    That test was the trigger for me investigating the rabbit hole that is severe mold sensitivity. I realized that my and my parents belongings from the old house were almost certainly a problem. We had a mold remediator come out and found some limited mold in the attic and HVAC system as well. After some soul searching I decided it was time to leave my house and all my possessions and head out west to try to find a mold free house to heal. On my doctors recommendation, my first stop was the southwestern desert.

    My journey was filled with mistakes, as at that time I did not understand just how sensitive I had become. I did improve to the point that I could travel and take care of myself alone, but I was still quite ill and kept being exposed to places that I reacted to. My health roller coaster continued as I traveled from NM, to AZ, CA, NV, UT, and finally CO. This whole trip my goal was to find a rental that felt good in a healthy place (the locations effect was always on my mind). I found good locations, but I never managed to find a rental that worked well. Finally, I settled in a ski town in CO in a decent rental. Here I'm far better than in my old house, but I am not where I want to be.

    TLDR: I'm a 26 year old male who left home after my condition worsened due to steadily increasing mold sensitivity. I've traveled a while but have been unable to find a decent place to live.

    I've come to the conclusion that the best option for me is to build a small, healthy house in the high desert. I've realized through my travels that horse stables, farming, and 'urban decay' -- things left out in yards to rot, dirty buildings, and so on -- are bad for me. That rules out huge swaths of NM and AZ. I also need at least DSL internet for work. Finally, I know I want to build either adobe or ICF for mold, but to find builders that are in my price point I can't get away from NM and AZ even if I wanted to. Mild summers are also important to avoid having A/C issues which rules out a good bit of the desert.

    At this point I've found builders I'm happy with, and I plan to build a small Rastra or Adobe home in northern NM. The top candidate right now is Los Alamos because it has no horses, no farming/agriculture, and feels generally good to me (particularly Bandelier). The areas around Santa Fe are also on the table if min sqr footage requirements are workable, particularly the neighborhoods northwest of Santa Fe. Beyond that it's tougher as I have to balance internet and covenants versus the obvious desire to be in a rural, low pollution, good feeling area.

    My question is simple -- am I doing the right thing? Is there some alternative I have not considered? Is the location sensible? I know at this point that the environment is a key component of my poor health this last few years, and I won't get any better than I am now until I'm in a place that does not cause me to react. I've considered other options like RVs, mobile and/or tiny homes, even long term camping, but none of them make as much sense to me. Any opinions are welcome, especially anyone with a similar mold allergy and/or CFS/ME who has successfully relocated. Thanks for taking the time, I look forward to hearing everyone's thoughts.
     
  2. Diwi9

    Diwi9 Senior Member

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    I'm not sure there are building sites in the Los Alamos area, maybe near White Rock. If you are environmentally sensitive, Los Alamos has some contaminated areas because of the Manhattan Project. After the forest fire that hit portions of the town, radiation levels in the Rio Grande went up when rains washed burnout into the area. Also, there are horses in a part of Los Alamos. There are horses all over NM.

    Based on what you want to build, consider the areas in and around Taos, Tres Piedras, and Ojo Caliente. Just know that Northern NM can get very cold in the winter, especially at night.
     
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  3. Forebearance

    Forebearance Senior Member

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    Best wishes with your plan, @MACO1234 !
    I hope that it works out great for you!

    We all make a lot of mistakes on the journey to get away from mold toxins.
    The only thing I can think of to add is that the people I know who have done what you are planning on doing successfully have been people who have avoided mold toxins long enough to know how to keep their new house clean. If you can avoid cross-contaminating it by accident, then I think you have it made.
     
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  4. cigana

    cigana Senior Member

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  5. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    I really like the livinlite trailer I bought if you have an extra 30k laying around. https://www.livinlite.com/products/quicksilver-toy-haulers/
    I got mine for 23k. but last I looked they listed around 30.

    I still have a lot of issues with what might be reactivity or other related issues with cfs. Particularly gut. I think the problem is that there are so many things you have to do right and all at the same time to see any appreciable results. I was on an all french fry diet when I discovered the connection between gluten and a lot of my symptoms, 6 years ago stomach bloat, neuropathy in my arms, soars on the inside of my lips, Proctalgia Fugax. All the above symptoms cleared since I went gluten free.

    For a long time it seemed all I could eat were french fries without reactivity. Now I eat rice, beans, nuts, fruits of all kinds, veggies. I have actually started a high nutrient low calorie type diet. I avoid refined sugar and fat's and eat whole apples, oranges, bananas, I dice up a lot of garlic and throw it on my rice and potatoes. I also eat whole lemons, cut them up into eight sections and eat them with my meals. Hope is if there is any truth to the vitamin deficiency issues people with celiac get, dr lipkin has alluded to I might be able to treat it this way.

    It seems to be helping.
    Not much of a pill popper.

    All bet's are off if I am in a moldy home. All the gut issues seem to come back but there are just so many variables it's hard to say.

    I'm living in a home made truck camper I keep inside a building right now.
    http://i185.photobucket.com/albums/x74/antares41_41/truck01_2.jpg
    http://i185.photobucket.com/albums/x74/antares41_41/truck02_2.jpg

    I made this building out of drywall and metal studs.
    http://i185.photobucket.com/albums/x74/antares41_41/house1_2.jpg

    Thinking being if I could control the moisture which I can being it's inside a metal building I could live in it. After six years of denial I don't think that I can. I don't understand it but suspect there is something inside the drywall I react to other than mold. There is no visible mold. It could be the white styrofoam panels I insulated the inside with. Who knows!

    The panels on the truck are called foamular.
    https://www.insulationmaterials.com/products/oc-1150
    I'm doing fairly well now, actually much much better since I finally gave up completely on the drywall building.
    The foamular has like no smell at all. By far the best building material as far as outgassing goes.

    I don't really believe much in the extreme avoidance tactics, not to the point I worry about discarding items. My concerns are visible mold I can see. Why I don't like conventional housing and rv's. You can't tell what is behind the walls.

    My 30x40' metal building was much cheaper than I thought it would be. $24k 6 years ago. Land in my area hear in south central, (t or c) nm can be had as cheap as $700 an acre (in remote areas not in the city limits) if your in the right place at the right time. I thought being I am 14 miles from agriculture I would be good on that front (pesticides) but the bureau of land management sprays herbicides out here to kill mesquite and grease bushes. Sucks! Not much I can do about it. If I read the news paper I could get away when they are doing the Ariel applications. From what I understand they are small pill size tablet's that dissolve when it rains. Don't know weather I buy that though cause one june I was driving into town and there hadn't been rain in a long time and the mesquite were all dying like they had been sprayed with something like roundup. Of course that is non selective and the herbicides they use target specifically mesquite and grease bushes leaving the grass.

    Heat isn't as bad as you might think, June is hot cause it is dry, once we start getting clouds and rain the temp (july) usually is around 90. Last year I used the ac, this year I am probably just going to drench my shirt in water and soak my head. The evaporation keeps you comfortable this way. One time I even put visqueen over my mattress so I could lay in bed with a wet shirt and hair. At night I can always get away with just a fan. Very pleasant.

    My place here sit's empty quite a bit cause I have been spending a lot of time on the east coast seeing my dad.
    I often think I would like to let somebody use it while I am away but I seem to always have bad luck dealing with people. And like I said I don't really practice the extreme avoidance thing. I have an old mobile home on the property and I'm sure it has mold in it. It's just 200' from my building sight and I don't really think it affects me. I suspect most people in this forum wouldn't want to be near it though.
     
    Last edited: Apr 5, 2017
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  6. SueJohnPat

    SueJohnPat Sue

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    I would go to the website Paragigm Change. You can download a beginner's Guide to Mold avoidance for free. I was not sure it made sense to me either ( at first. Could not believe it was not being looked into by mainstream science when it became so obvious it worked ) but I improved greatly by just closing our basement door ( had mold in basement now remediated no one else is sick) and taking cholestyramine. I am seeing an integrative doctor who is treating me for Neurol Lyme and yes I am camping in a tick infested area of NJ. But my instinct tells me that if my immune system calms down I will be better able to clear the Lyme infection.

    I went to the Death Valley area . Stayed in an air B and B in Tecopa. Ca. The air B and B cost 40 dollars a night and was fantastic. After 2 weeks i hiked 3 miles up a mountain. I felt 25 again did not realize how crappy I always felt even on " good " days. I am 52 years old and have a confirmed cfs diagnosis. I am back in NJ and can't leave yet. Had a bad relapse from Jan-march. Now warm enough and I am camping in my fathers yard in a semi rural wooded area of South Jersey. When I camped I started to improve greatly again. My son with Aspergers seems to want to come along and he says he feels better sleeping in the tent. We are going there every other night and this seeems to be enough to keep me reasonably functional.

    I was never the " camping type" just the opposite but I am learning to love it!

    I think our home is in a " plume" . My family thought I was nuts but they are not scoffing anymore after seeing me come back to life again.

    For anyone with this illness I would try this! I was very ill 2 years ago, Keep searching and never give up. I do not think I am super reactive but I now am aware of reacting to certain " toxins " I just rinse my hair and wash my face and avoid 2 days of feeling like death.
     
  7. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm

    As many times as I've fooled myself as to what mediates my symptoms and what don't, I've come to the conclusion "I will probably never really know."

    The things that shout the loudest about the "extreme avoidance" discipline being dubious are ordinarily the conventional wisdom is that the dose makes the poison and that rule is pretty much thrown out the window here.

    Also cause the conditions to properly test the concept are so stringent there is no practical way to test the concept. There are always going to be extenuating circumstances and variables you can't properly control for.

    Which is one of the circumstances you usually run into with pseudoscientific claims, no way to test for it. So there is always the remote plausibility. Probably one of the reasons main stream science hasn't looked into it, or even addressed it. It's an extraordinary claim but their isn't any extraordinary evidence to support the claim.

    There isn't even any well documented good evidence to support my much more reasonable position that hidden mold that would be visible if it wasn't behind walls, in attics and underneath flooring is causing or can be associated with CFS.

    So for me it makes no sense to even bother trying the extreme avoidance discipline. My level is what I like to call "common sense avoidance"

    Again though I am all about avoiding hidden mold most buildings have in their ac ducts and equipment and behind walls and what not. And conducting studies to try to find an association with CFS. This seems perfectly reasonable to me and I consider it criminally negligent that this has not been done.

    Also suspect, but don't know, that certain regions might be better than others. Deserts, beaches, maybe high places, maybe places that are covered with snow to keep airborne particles down being on the top of my list. Not sure about that either though.

    Again I've just fooled myself too many times to accept most anything I believe with any degree of confidence.

    Except maybe of course the fact that CFS is physical and not mental.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    @antares4141 I hear you on that

    If only someone would do a study that took 100 CCC patients to a pristine living complex in Moab, Utah with 100% new belongings, put everyone through a decontamination protocol, and had them live there for 6 months

    And simultaneously took a group of 100 CCC controls and put them through a comfederate process in a similar complex that had normal mold levels you'd find in a given building

    Would likely cost a lot
     
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  9. cb2

    cb2 Senior Member

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    @SueJohnPat thank you for sharing this. my dr had me do some ART testing for mold. and it came back high.. but he wants me to move .. i liked your idea of closing the door and taking a binder. I also liked your idea of going to the air bn b in the desert. i am in northern california where rents are crazy expensive and it's not safe to camp in my small yard.

    i will look on paradigm change. i really need some ideas. thanks!
    at this point i am not even sure the ART testing is reliable.
     
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  10. SueJohnPat

    SueJohnPat Sue

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    This worked at first . Did have a relapse .

    We has a cool rainy spell here for 5-6 days and I stayed at home , plus we have painters here painting and sanding all the wood porches. That in combo with the rain slammed me. Could not think straight and was afraid to leave the house.

    I stayed in a hotel last night and tonight and will camp tomorrow. In Erik Johnson's and Lisa Petersons book it said to leave if there is any remodeling going on. I should have listened. My worst symptoms now is I get very foggy headed confused and tearful. But when I am clear I have much much more vitality and do not have to pace anymore. . After staying at the hotel I feel normal. This is 15 minutes from my house plus it was a very warm sunny day.

    I think I am getting more clear so I am getting much more reactive if exposed to " bad" mold or whatever toxins are in the air. I got slammed at the motor vehicle department in my holly NJ Friday. I had to leave immediately. Decontaminated but was sick for 3 days. I went to another dmv in another town and discussed the " bad" building. The guy at the dmv said employees have been complaining about health problems there but the building " tested" fine.

    I' now depend on how I feel when in a certain area. Paradigm Change has been dead right about everything in my experience.
     
  11. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    I've been doing this for 20 years, much of the time I "suspect" things I attributed to "bad places" might have been to other factors such as my IBS, food sensitivities, vitamin deficiency from mal-obsorbtion of food, reactivity to the main place where I spent most my time, PEM from the heightened level of activity it took to be out and about in the first place. Not trying to crap all over what your saying you could be absolutely right. Just without reliable mechanisms to test for certain theories we all have, all we can honestly do is speculate what drives us up and down this rollercoaster of symptoms we all experience.

    Ironically a lot of the CFS denial is driven by the highly flawed argument we are somatizing. A theory that ignores the fact that just because we may be absolutely wrong abut what is driving our symptoms it doesn't nessassarly mean we are "somatizing". Anymore than someone with for instance undiagnosed Parkinson's, Lyme's, syphilis, MS, Scurvy, might do the same thing.

    Actually what would be extraordinary if someone suffering from some such condition didn't do this. It's human nature to want to try to figure out what is causing your symptoms and try to correct it. It might look to a healthy onlooker we are "hysterical" We all do it though, we are hard wired for it.

    It's too bad the promoter's of the "it's psychological" theory don't acknowledge that their exclamation is over simplified to the point that it doesn't mean anything. Of course that would be either admitting that they don't understand the fundamental aspects of scientific investigation or knew they were making allegations without any meaningful evidence to support it. Or some combination of the two.

    Not many have the integrity to do this. If one day it comes out we were right, we were sick all along and they indeed were full of their own crap. Probably most all those people promoted psychological theories as if it was a well understood and easily diagnosed condition. Will deny this and instead pretend they knew CFS existed all along.
    Actually they will probably do something similar to what pace researchers did/do which is pretend to believe some of the symptoms of cfs might be real but maintain their treatment's they would never use on any of the other above mentioned conditions were the best medical science had to offer at the time.
     
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  12. SueJohnPat

    SueJohnPat Sue

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    tel
     
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  13. SueJohnPat

    SueJohnPat Sue

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    I spent two nights in a hotel. On the second night I bought more clothing from my home. The second day felt slightly lousy. Was in the car and had an emotional meltdown while talking to my pharmacist. I kept repeating words and had trouble speaking.
    I attributed the shirt I was wearing. ( shirt did not smell moldy) Wish I were a guy I would have just taken it off.

    Drove to a store bought a new shirt . About 5 minutes later I was totally calm. Went to the pharmacy , still a little jacked up but I was calm articulate and I told my pharmacist what happened. ( He had listened to a confused tearful woman about 30 minutes before) He was my old boss. I was a pharmacist . I made a believer out of him.

    We are moving . My irritable bowel is better , I am able to do much more activities without pem. However the " emotional " stuff hits me if I am exposeed to mold. I am not sad, it comes over me . My husband took a year to be on board. You have to see it I guess to believe it

    If I start-feeling " foggy" or tearful for no reason, I go outside , rinse my hair or will change clothes. I bought new stuff I keep separate and am gaining ground . It is very very difficult, but I am getting my life back.

    Before Persuing mold avoidance I was treated for Epstein Barr ( got rid of fibromyalgia pain - my first big issue that ground my career to a halt)
    I also followed Ken Lassen's blog and bombed my gut first with rifaxamin then heavy duty probiotics , Vsl 3 Mutafor.
    After this still not well did mold avoidance.

    I do not have evidence but I have found that when I use my " scientific " mind and strike my own path this was far superior to what doctors could do. Each one of us can find the path that works for them.
    I have been ill for 7 years and was convinced it had to be something.

    I rely on what I call my spider sense and I am improving greatly. I call the " mold" neurotoxins or whatever the hell it is the " dementors.
     
    Last edited: May 1, 2017
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  14. SueJohnPat

    SueJohnPat Sue

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    Ps . I did have art testing done. A little out there. Art said I had Lyme in my brain . I think there is something to it.
    I believe my super reactivity to mold or " pollutants" has hindered my immune system. I am taking herbs for the Lyme and am taking chorella and switching it up with cholestyramine. I have gained much more physical endurance and have longer stretches of " feeling normal" again.
    I think we all have a bunch of bugs parasites Lyme ect . They just get out of control when our immune systems get injured.
     
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