In light of recent criticism of my last blog post from some members of the avoidance community I highly respect (namely those that have been most instrumental in guiding me on this exercise), I feel compelled to clear up some points. To be clear, I am not willing to bend to their POV simply because I respect them, but rather I’ll discuss their points of criticism respectfully & thoughtfully.

Criticism was directed at the following:
1) My posing of the concept of “Point of No Return.” Basically, this was interpreted as me suggesting the concept that we cannot return to our old places (bad homes or bad locations) without, essentially, dying. They suggested that I was saying this without any evidence whatsoever, and they also suggested (with a great degree of certainty) that my heightened reactivity to tents, trees etc must be due to a biotoxin exposure, rather than simply me being reactive.

2) Me using this concept and the difficult of my journey to conclude that I would never advise anyone to do this.

Response to #1:

I merely posed the concept, which was made clear by my re-titling of the section as “Jury’s Still Out.” I have not come to any conclusion, also made crystal clear that if I had spent more days in a moderately bad place, perhaps my insomnia would have subsided as my body “masked” the response.

I do not share the certainty that you guys have that my reactivity to chemicals and seasonal allergens is due to a biotoxin exposure, and here are two reasons why:

1) I couldn’t tolerate multiple tents I tried in the high desert of CA where I otherwise felt fine. I also couldn’t tolerate tents in NV, where I moved to next. My MCS later on was simply a continuation of this.

2) I felt fine when I left the high desert of CA, and then when I returned to a place that felt “good” to me during moderate avoidance (Deer Creek State Park), I felt ill this time with brain inflammation. I then felt better again as soon as I returned to a dry location, and then I felt ill again as soon I touched down in Montana. Therefore, my feeling ill with brain inflammation and allergies in forested areas began prior to these exposures.

Now, I agree that I had 2 biotoxin exposures, one in Montana in the north end of Gallatin Forest (I know because I felt terribly ill there as soon as I entered), and another one possibly due to contaminated water used to wash my clothes. After discovering this, I removed all items that had been washed, which helped moderately. This allowed my insomnia to subside, but did not however fix the unrelenting brain inflammation, shortness of breath, increased brain fog & PEM that I have in an isolated forest area (which I’m forced to stay for now due to the heat)

If the car was contaminated in Gallatin, there’s not much I can do about that at the moment besides removing items from my car, changing out the filter system, and driving it up to 10k feet and back down (all of which I did), but important note: I didn’t have the above inflammatory symptoms when I stayed in an arid location (where I felt great) post-Gallatin exposure.  Thus it wouldn’t make sense that the car is the cause of these symptoms.

My carefully-put-together train of thought so far then, is that these lingering inflammatory symptoms and MCS are not due to a biotoxin exposure.  I share the opinion of an expert avoider that it appears that some people simply have problem with the woods, reasons unknown. I think that is the case with me, because I’ve been to now 5 different forests since extreme avoidance, and all of them feel problematic. This includes Bryce & Zion, which several avoiders found to have great air quality.

As for the refutation of my point because it was posed “without any evidence,” I can only say the following: the entire portrayal of biotoxin avoidance as a treatment thus far has been based on anecdotes with an indeterminate sample size. Regardless of how my experience differs from the “norm”, it should be taken as a data point because this is an observational study. Secondly, how is the norm being defined? Q1: Have 100% of patients not experienced increased MCS and other “benign” environmental sensitivities as a result of doing extreme avoidance, rather than due to an acute exposure?  Another patient doing extreme avoidance right now, whom started at the same time as I did, has also described an uptick in MCS which wasn’t a big problem for her prior to extreme avoidance.  Q2: Also, how many patients have done extreme avoidance, then returned to only a “moderately bad” place, had unrelenting insomnia for several nights, and then “masked” this response after staying there?

To establish whether my anecdote is truly an exception or outlier and whether the “point of no return” is a ridiculous concept, I believe these 2 questions need answering. Additionally, My anecdote should not simply be disregarded as “lacking evidence” because it is the evidence, in this case.

Response to #2

One person who criticized me for saying this has also said they wouldn’t advise others to do extreme avoidance because it is so difficult.  Another said they wouldn’t advise it unless the person had no other choice.  Both have said that their point in helping people with extreme avoidance is not to advise anything to do avoidance but to increase the research into this phenomenon.  One person openly advises people to grab a tent and go camp for 2 weeks in the middle of nowhere.

When discussing a treatment that has substantial risks (which is undeniable in my mind), I don’t think I’d be comfortable advising anyone to do it. However, if someone decided they’re still interested, I would be willing to discuss my experience and even help with logistics, as I have on a number of occasions. In other words, I wouldn’t advise anyone against doing this either. That’s not up to me.

The point of my blog is to portray my experiences transparently to give people the most material with which to draw their own conclusions, and currently that experience can be characterized as insanely difficult. I’ve removed the “wouldn’t advise..” line from my last point, as I think it just causes unnecessary confusion.

About CityChanger

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

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