This post is going to reinforce a lot of old notions about biotoxin avoidance, but it’s also going to illustrate my personal deviations, sometimes wild, from these.

To catch up, since the last time I posted I’ve migrated north to escape the heat. Heat’s always been a big sticking point since I can’t sleep in my trailer once it hits 75 degrees. After realizing I wasn’t gonna be able to get quality sleep in my trailer short of sleeping at 8000ft elevation or going to Canada, I decided to try tent camping. What came next was shocking: I could no longer tolerate any tent. Name it, I tried it. I went through at least 20 different tents, including brands people said were MCS-safe. Not only that, but I was reacting to sleeping bags that would’ve been fine before. Now keep in mind I was in MCS purgatory pre-avoidance, but this is definitely MCS hell.

After that, I tried sleeping with the double doors of my trailer wide open and bug nets, but now I find I can’t tolerate any bug netting either! Not polyester, not nylon.

Then I tried sleeping outside with just a screen room tent and a cot, but surprise! I seemed to be reacting to the outside air!

This pattern of sleeping between a rock & a hard place has continued to today. With 7 months of extreme avoidance now under my belt, I’d like to summarize how my experience compares with my earlier ideas about avoidance:

Jury’s Still Out:

1) There is no such thing as a “point of no return”.  In my case, there is simply no way for me to return to a house that I lived in pre-avoidance because I can’t sleep there, even with Restoril a medication that used to work wonders for me. Although I was warned about this, my understanding was that the body would compensate and allow you to function in that environment. I haven’t tried staying in a location I’m reactive to more than a few days (since by that time I’m running on empty and every signal in my body is telling me to bail), but perhaps if I did, the insomnia would subside.

2) Reactivity starts coming down around the 6 month mark. I’ve done avoidance for almost 9 months now (extreme for 7) and my reactivity is clearly at an all time high.

3) The locations that other avoiders find beneficial should also be fine for you. As you become more reactive, you could react to pollen, grass, benign molds, etc. It seems that being reactive to these pre-avoidance increases this likelihood. Not being able to sleep outside when your house is an oven and you can’t tolerate A/C might actually mean something incredibly scary: not being to sleep anywhere at all! Everyone is different, even if avoiders are somewhat similar, so now I’d probably advise to a new avoider: expect to become reactive to pretty much everything and above else, have back-up plans for MCS-safe shelter come temperature extremes.

4) Avoidance is a cheap treatment.This may be true compared to ampligen, but it’s much costlier than I first thought. I didn’t think I’d go through as many sets of clothing and bedding as have. I’ve written off around $1k-$2k of clothes (I buy the cheapest clothing possible: hanes, walmart), moving around from campground to campground when you need electricity is really pricey (it’s only affordable when you pay monthly in most cases).  If it weren’t for the generous return policies of REI, walmart, etc, that number would just be scary. Still, that probably pales compared to how much I used to spend on supplements in an 8-month period.

New and confirmed ideas:

1) The brain changes.  Restoril was my go-to sleep drug and now if I’m reacting to something and need Restoril, it likely won’t work nearly as well as it did before. The only thing that seems to resolve my insomnia is changing locations or decontaminating.

2) Avoidance is not just a bandaid: it’s healing. Even for the first few months of avoidance, if I didn’t sleep I invariably couldn’t function. I haven’t had solid sleep in more than a week, yet I’ve been driving 4 hours a day, half of that towing a trailer, and pretty much haven’t had much downtime each day. Today I still managed to work out (30 pullups) and play basketball after driving 4 hours and shopping.  Similarly, my toxicity continues to lower (TMI alert!): during the first few months of avoidance, when I didn’t have BMs, I would feel toxic pretty much until I did. That is no longer the case. I still feel better after BMs but that overwhelming feeling of toxicity seems gone for the most part. CSM seems less beneficial now, as I no longer feel a clear difference from taking it and sometimes go days without taking it. Coffee however still feels like a very good thing in the morning by sing the liver & gallbladder.

3) Cognitive progress is slow. My mental stamina feels improved, but it’s still tremendously weak. While I was physically fine on little sleep, I haven’t been capable of any cognitive strain (creative writing, for example).

4) The heart is a sensitive thing.When I’m pushing myself hard, I feel it on the left side of my chest. When I’m exposed to biotoxins, I also feel it there. The heart is an important tool for detection, and repairing its weakness is much harder than repairing every other muscle.

Conclusion:

There were several times this past week when I asked myself if I’m insane for continuing with this. I’m not living anything close to a normal life, and now I’m also unable to do work (which was the one thing that made all this so easy to overlook). However, due to the experiences of those before me, I believe that right now is the hardest part, and that the reactivity should come down soon. The fact that I’ve become physically stronger even as I pretty much hit obstacle after obstacle for the last 2 months shows that even while I’m reactive, my body is healing.

Avoidance is much harder than anything I ever imagined. I can also see why only a handful of people have done extreme avoidance. It is hard because it affects your sanity, makes you extremely isolated if you’re doing it alone, and may totally incapacitate you without leaving any exit strategies at times. But if I knew all that I know now 7 months ago, I would still do this. That’s how sick I was, and how close I was to suicide before I started “moderate” avoidance 1.5 years ago. Although I don’t think this is a “healthy” mentality, I measure much of my self-worth by my ability to do meaningful work, so the hope of being able to do that was solely how I justified the decision to do ampligen. Compare that to aovidance, which has afforded me the opportunity to work 90% of the time and not spend $20k to get there. In summary, it is hard as all hell but it’s worth it to me. If things stay as they current are forever, I reserve the right to change my mind!

About CityChanger

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

8 responses »

  1. Kelly says:

    Dear Citychanger,

    You don’t have to spiral into what easily may seem like insanity, and may look to others like insanity, just because 2 or 3 vocal proponents say that avoidance is the only way. There are other ways to recover from mold and MCS. There’s always the Planet Thrive website for some ideas, but there’s also this article about a woman who is doing well, and others can be found via Google. And no, I don’t work for the doctor, I’ve never met her, I live on the other side of the country. But this avoidance thing…there are other options besides those touted by you know who…

    http://www.pressofatlanticcity.com/news/press/atlantic/article_b27da434-22b1-11e0-a67f-001cc4c03286.html

  2. Floydguy says:

    Kelly – CityChanger suffers from ME not mold toxicity or MCS. They are not the same thing. Avoiding biotoxins helps many with ME but it doesn’t cure them. This person in Atlantic City almost certainly doesn’t have ME.

    • Kelly says:

      Hi Floyd — then why in the world is he/she on the mold avoidance journey, and reacting to everything, including and especially things that are rated as MCS-safe?

      I didn’t say the person in Atlantic City had ME, nor that the doctor could treat that, but apparently she has had success treating the MCS and mold issues that some ME patients like Citychanger have.

  3. CityChanger says:

    Hi Kelly,

    By no means am I spiraling into insanity. I wrote that at the lowest point in my 8 month journey, and the language may have been colored by that. My point was that the difficulty & isolation of this experience can affect one’s sanity, not that it removed mine at any point.

    My dedication to this endeavor has nothing to do with the people that insist on avoidance as the best treatment for ME/CFS but rather that it has been far & away the best treatment I’ve done, based purely on objective improvements, so I intend to continue with this exercise.

  4. Kelly Connor says:

    Dear CityChanger,

    Just want to say how much I appreciate your blog posts. I am considering an extreme trial, but it has to wait because of family obligations. Meanwhile, I do what I can to minimize exposures. Right now, we have a lot of dust from the Sahara in south Texas, and that is messing me up. It’s almost always something.

    I also am terribly heat sensitive, so I really sympathize and hope you can find a solution soon. I’m pretty sure I would react to any forest as well. I used to live among the pines in Colorado, but now they bother me.

    With the weather changing and so many chemicals being dumped in populated areas, it’s hard to figure out. I can see how it would be exhausting and frustrating. I never took your earlier post to mean one could never go back, more that you had put in your time and were disappointed that reactivity was still high.

    Anyway, I’m trying to learn and figure out what to do and I am very grateful for your posts.

    Kelly Connor

  5. Geronimo says:

    An interesting phenomenon, the increased reactivity. I’ve always thought it was a pathogen that was responsible for all the bizarre immune twisting in ME/CFS. If this is the case perhaps the critter redoubles his efforts under strain, desperately trying to sustain himself on dwindling cytokines, or something. Food, drug, chemical, biotoxin; it’s all fair game. Hopefully you have him on the ropes.

    The inactivation of drugs is something I’ve experienced too. In my case this is due to sensitivity. As soon as I sensitize to a medicinal agent it stops working. Nothing unpleasant, just stops working.

    • CityChanger says:

      Hi Geronimo,

      Thanks for chiming in.

      I’ve now found that the restoril simply stopped working because of my exposure. The medication seems to be working again (on the few occasions I’ve taken it) now that I’ve removed the exposure. I really don’t know how that works.

      Not to say I don’t believe in sensitization to meds. When I was taking Restoril daily, benadryl daily etc, the effect always diminished over time. But like when I drink coffee once a week compared to when I drink it every day, the “hit” is inevitably greater. I find that even if the drug effect has diminished, once I stop taking it for awhile I get the “hit” again when I reintroduce the drug.

      I sound like a total square don’t I? :)

  6. Geronimo says:

    In “Surviving Mold” Shoemaker states VIP works to reduce reactivity in both biotoxin exposure and MCS.

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