“I have chemical sensitivity and I just need to make sure I don’t react to the paint”

“I have mold sensitivity and I just need to make sure I don’t react to any mold spores since there’s a basement”

“I have an autoimmune disorder….”

I’ve put some major mileage on all excuses to try to “test drive” a house.  For those that are severe reactors like me, renting a good house in a booming urban area has about as good of odds as winning the lottery.  I wish I could say I were being persnickity but if I can’t sleep on the first night, I might as well hand the landlord rent x 12 because I’m sure as hell not gonna be able to sleep there any other night.

To make matters worse, I had my first cause-and-effect experience with “ick”, the particularly noxious biotoxin that seems characteristic of certain places like the Bay Area, Michigan, Lake Tahoe etc.  I did laundry at a friend’s house that used to live in the East Bay.  They did not bring their washer/dryer with them to Utah, but all their furniture, clothes, and cats.  I thought since they’d been here for 2 years, the “ick” would’ve denatured by now.  Boy that was an expensive assumption.  All of a sudden, I started not being able to see clearly, think clearly, or breathe deeply in my trailer that was perfectly fine the day before.  I thought it was the city air, but that didn’t make sense since it had gotten warmer, not colder.  It took me about a week to figure out due to Lisa’s suggestion that it might be “ick”, at which point I took all that fabric to a public laundromat to wash then hangdry—twice, crashing further in the process.  I threw out every piece of clothing and bedding except for my thermarest self-inflating pad, woke up in the middle of night in a tizzy, crazy wired and listening to my heart go nuts.

At 6 am, I said f it, I’m starting over and headed to Target to buy all new clothes and bedding.  The next three hours of sleep felt like the first real sleep I’d had in a week.  Just like that, I became a believer in “ick.” It took personal experience feeling better in a different location to believe in the location effect, and it took personal experience with “ick” to realize just how bad “mold” could be.

It seems like washer/dryers are more problematic because if they’re contaminated, whatever they’re contaminated with gets into your clothes.  Just touching the same surface doesn’t seem to have the same effect.  Good thing, because I was freaking out about now having to buy new clothes if I sat in the same chair as someone else carrying this gnarly agent of silent buzzkill.

The downside to this revelation is I now harbor no shred of doubt that I’m a severe reactor, and that it will take either avoidance, ampligen, or the combination to lower my reactivity to toxins.  I’m at the point where I’m realizing that sitting in one corner of Whole Foods might allow me to breathe perfectly fine, and the opposite corner might make me hyperventilate.  Not an exaggeration.  Certainly avoiding this stuff seems prudent at the moment but doesn’t sit well as a long-term solution.  If I do have to avoid this stuff for the rest of my life, I have no idea how I’ll carry a normal relationship with family, close friends, or ever dream of having a significant other again.

The plus side of this experience is that I’ve learned to trust my instincts and perhaps no longer have to sleep in a place to rule it out.  I still need to sleep it in to seal the deal, but at least weeding out a place has become more reflexive.  Because I know what ick feels like and I now have a pile of clothes crawling with “ick” in public storage, I’ll also know if ampligen enables me to stop reacting to it.  If it does, that will be a big clue into what’s going on with us and a powerful testament of Ampligen’s efficacy (maybe not to those who don’t believe in it, but to those that have experience cause-and-effect, trust me it’ll be nothing short of a miracle.)

I’ve asked my doctor if I can postpone ampligen infusions due to my difficulty finding a place, and doc said the latest we can push back is 10 weeks from baselines.  Major disappointment since I was hoping to screw this whole house-finding business and just wait until the house in the middle of nowhere was built.  I need to find out if I can still secure my spot in the trial if I do postpone.  A part of me still really wants to go to Florida with Klimas and live right on the beach in Coconut Grove for a relatively low cost since right on the beach is where mold avoiders tend to have no shortage of success despite the high humidity (certainly whatever’s plaguing us isn’t just your grandparents’ mildew-y mold).  But that’s a huge investment of time, energy, and risk that I don’t feel comfortable taking on at the time.  Perhaps that might be a wiser move later down the line when ampligen has dampened my sensitivities and increased my reserves, but if I moved there now I would probably have the same difficult finding a suitable residence that I have inland.  It’s nice to know that’s an option for those on the east coast though and maybe those of us who don’t have the results we’re hoping for on ampligen at other trial sites.  I would think living on the beach within a stone’s throw to infusions in Kendall would get us reasonably close to the Hawaii effect.

About CityChanger

This blog is about my participation in a clinical trial for ampligen, an experimental immunomodulatory and antiviral drug, for ME (Myalgic Encephalomyelitis).

3 responses »

  1. islandgirl says:

    I’m the same way, re: even one spot in a coffee shop being more icky than the others. Since I moved the what friends call “my” island, I’ve noticed that there’s a certain spot in the grocery store Starbucks that is OK for me. Just that spot, though. I have to pretty much shark for it if I want to have a coffee there after getting groceries. Can you imagine approaching somebody and trying to explain WHY you need that exact spot? “Ma’am? I assume you’re not an extreme mold reactor. Well, I am. I uprooted from my life in the city and I’m living on the island as an experiment to cure my Myalgic Encephalomyeltiis. If I sit anywhere else, my lungs are going to feel stabby and I’m going to want to bolt out of here before I finish my latte. That spot over there just feels ickier. Can we please trade?” Somehow, given how liberal people are here, I think that has some chance of flying!

    It gets better when you stay in one place, though. You get your spots. You find whole coffee shops that feel un-icky. I know several people from Phoenix Rising who’ve felt better seeing Klimas and have had locations effect type experiences just from their visits. Wishing you all the luck in the world on your journey. Loving this blog.

  2. Believe it or not, this is the best possible thing that could have happened to you.

    As you’ve found, this particular toxin is especially potent and sticky, so you really don’t want to get any exposure to it. This contrasts with “regular bad mold,” which is much less potent and washes out really easily (unless clothes have been exposed for months or years).

    So now that you know what reactions you get when exposed to this toxin (which some folks colloquially call the “ick”), you can make a special effort to get away when you come into contact with it. For other sorts of mold, you can be much more (relatively speaking) cavalier.

    The one thing that you’re not talking about in this blog is detox. I think Ampligen might lower your reactivity some, while you’re on the drug. But if you want to get really well, long term, I think you’re going to have to do some intensive detox. Hopefully the Ampligen will allow you to do it in a place that’s not totally pristine though. (CFS sufferers usually get really sick when they try to detox in a bad or even mediocre place.)

    BTW, with regard to the last blog — another factor that Hawaii has going for it is sun. There’s some evidence in the literature that UV light neutralizes mycotoxins. And I wouldn’t be surprised if negative ions (from the ocean or vegetation) have a positive effect too, based on my experience.

  3. CityChanger says:

    Thanks Lisa and Islandgirl.

    I will begin discussing detox shortly. It has a sweet spot on my master list of things to do to optimize ampligen, but I’m waiting for the right time. My experiences with detoxing in non-pristine locations in the past tell me doing so will at worst cause hell and at best be a waste of money, so the beginning of amp will bring that discussion along.

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