[sickbuildings] Update with dr's here making comments.Re:Mysterious Death After Gardening

[Guest guest]

wrote:

> The medical profession and toxicologists have repeatedly

> demonstrated that their testing reveals no " scientific " reason for

> these complaints.

===============================================

Reply: I understand what you are saying but this has not been my

experience at all. Most people can figure out what is harmful to

them so taking matters into your own hands is always possible.

However, test results are the only way to get qualified medical

help, legal assistance for such things as release from a lease,

disability 'awards' (like that is a prize!), legal redress from

unacceptable damages and, often, the respect of family and peers.

So, if your goal is to clean up a moldy area or reduce formaldehyde

by some manipulation of shelving or furniture etc., then there is no

question of needing to test. It is when you have a larger purpose

in mind.

Plus, it is only through collection of such data that any change can

occur via official circles. It took private individuals testing

around ground zero to reveal the EPA lies; private individuals

testing homes after west nile virus sprayings to get aerial drops of

malathion stopped; private testing to reveal the hidden fact of lead

in D.C. water (known to officials nearly a year earlier) or the

levels of formaldehyde in Katrina trailers. A friend of mine was

delivered some VERY moldy fencing that kept her from entering her

own yard and they refused to take it back ($1500 worth). She

invested $150 in testing the mold on it and got back all her money

to use on good materials.

The choices of medical tests often leads to negative findings

because the wrong things are assessed - usually endpoints not yet

disrupted by earlier aspects of pathology which remain unexplored. A

researcher was able to identify depletion of enzymes in my body post-

poisoning which prevent me from clearing most drugs or tolerating

new exposures to pesticides and other neurotoxins. Any personal

experimentation I do is useful on a practical level such as a diary

that reveals triggers in environment or diet. But that allows more

specificity in terms of what a doctor can do about it. When I

experienced neuro damage, no one took it seriously until I presented

them with test results showing exposure in my work environment. THEN

they ordered the MRI that revealed cortical damage.

I am not a rarity. I am only in possession of rarely accessed

information. We need to compile lists of patient friendly toxicology

labs (I have used three or four) willing to advise and perform the

most cost effective assessments after discussing the possibilities.

You are still taking matters into your own hands but obtaining data

that allows others to meet your best interests afterwards. Further,

those lucky enough to be able to purchase new housing, but who are

already damaged by chemicals or mold, need to do preliminary testing

before committing to the purchase.

Who you gonna call? It depends upon your needs and goals. Certainly,

the rest of the world cares not a jot for anyone's personal efforts.

So in terms of advocacy, formal assessments are absolutely required.

And all of it remains in 'our' hands.

Barb Rubin

[Guest guest]

>, I can't figure out what problems you have with what I am

>saying.The problem I have I thought I stated pretty clearly, the substance that your trying to avoid (I believe) is much more abundant in the air outside, so it makes no sense how the reactivity could be coming from the object in question. A much more plausible hypothesis would be your friends are mistaking this object in question for much more likely sources, " outside mold " " indoor mold from one's dwelling " " any place they go, friends house, library, supermarket " etc. (many times I have found my reactivity isn't instantaneous so I am always having difficulty determining the sources and skeptical of others that insist they always know) Until they remove these variables they can't possibly know what they are claiming to know. And what further denigrates anybodies credibility is when they use testimonials from others to bolster what they claim to know. In science testimonials are never taken at face value. They are treated with a great deal of skepticism and for a very good reason, people fool themselves all the time so they may be honest in what they believe but none the less they may also be wrong. (I also briefly touched how we fool ourselves in the last post)

Other examples would be the big foot legend, or ufo's, or esp, once these things are let out of the bag you can almost never undo the damage they become legend's and everyone claims to have seen one, or have some type of psychic power. You can't take personal testimony at face value EVER.

>>It wasn't a doctor who contacted you and suggested what the culprit >was.

I think this conclusion I reached because it seemed the most logical, and than when I started dismantling my kitchen I found a lot of mold. What has clinched it though is the dozens of antidotes over the years like the time I started using that moldy computer monitor in my boat and noticed the same time the increased illness. Or the time I took that same monitor to my brothers new house for a week where I usually always did much better but not that time, or how deathly ill my trailer made me, and how I was slightly functional when I had the windows open but when I closed it up and ran the ac I was bed ridden. (only after this did I discover the entire bottom of my trailer was covered with cladisporum as if it had been painted on with a brush) All these things have left me little doubt as to what is the cause of these wild swings that I have had over the years.

>>Do you think doctors would believe you even now? Let alone be able to

>recognize this phenomenon and give meaningful advice based on

>whatever tests they have?What stops dr's from believing is no one to date has been able to write a paper that sites a study that demonstrates this phenomenon is real. That's why I keep harping we need a a doubled blinded study that is similar to ones pharmacological company's do on the products they develop. Once this is done and it confirms the reality of mold related illness they will have no choice but to accept the reality. Than the political pressure on them will be so great as they will have no choice but to put money into studies that try to unravel this mystery, develop test's to diagnose victims and treatments to help them get their health back.

>I know for certain that for others at this level of reactivity,

>conventional testing only served to confirm a lack of physiological

>basis for their complaints - which added greatly to the disbelief of

>people who doubted their illness.

>As I said on sickbuildings, one must learn to disregard testing if

>it conflicts with their perceptions.I think the problem here is the current test's are not designed for the right pathogens at the right levels, nobody really knows what this is so they set an arbitrary standard that might be good for some mild reactors but insufficient for severe reactors to mold. Something again that serious research could shed a lot of light on.

[Guest guest]

Carl,

You stated: If they haven't

experienced a strong, persistent impact themselves they automatically doubt

what they hear from clients.

I have made the following statement for

years: We all have a bias. Such a bias may be based upon our knowledge as well

the lack thereof not to exclude our experience and lack thereof at the time of

an assessment. This does not consider any bias based upon the consultants

desire to do a favorable job for the client.

Once these factors are realized one may (hopefully)

be able to keep the line less blurred during an investigation. I like to allow

the environmental conditions to tell me what is going on (or what happened –

or hasn’t happened).

EnviroBob

From: iequality [mailto:iequality ] On Behalf Of Carl E. Grimes

Sent: Tuesday, June 17, 2008 2:45

PM

To: iequality

Subject: Re:

[sickbuildings] Update with dr's here making comments.Re:Mysterious Death After

Gardening

,

You described the conundrum very well:

When I try to explain the full dramatic nature of my

experience, people are revolted at how audacious it sounds. But if I express it

in lesser terms, it's then seen as a lesser experience not warranting of

interest.

My experience in trying to train people to do what I do is

similar. If they haven't experienced a strong, persistent impact themselves

they automatically doubt what they hear from clients. Nothing productive comes

from that, only the clash of polar opposite belief systems - scientific (truth)

vs anecdotal (fraud).

Those affected but quickly solved have no desire to be

associated with " sickies " and move on with blinders.

Those who understand the experience and want to help are

usually too sick to work. A few volunteer their time as they are able.

The climate is changing, as more members of this group

recognize, but oh so slowly!

Carl Grimes

Healthy Habitats LLC

-----

>

> ,

thanks for helping my understand the strange conundrum I'm

> in.

> When I try

to explain the full dramatic nature of my experience,

> people are

revolted at how audacious it sounds.

> But if I

express it in lesser terms, it's then seen as a lesser

> experience not

warranting of interest.

>

> I adapted my

training in biological warfare protocols from the Army

> to develope this

strategy.

> I was

forced into a more concerted method because doing less simply

> wasn't helping me

control my symptoms or recover.

> It's not

like I wanted to do this, but I have nothing else in the

> way of viable

alternate options.

> I looked around

in various groups because I wondered how many others

> are out there who

are stuck in a similar situation, but don't have

> this type of

training to resort to.

> Just as I

feared, it looks like there might be quite a few.

> -MW

>

>

>

> ------------------------------------

>

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[Guest guest]

I think I heard Rush Limbagh say if you want to bring someone around to your way of thinking you have to couch your position in a way that the person thinks they came to the conclusion themselves. Has to do with the person your trying to convince wanting to save face, and not admit their to stupid, and on your part it has to do with being generous enough to let them do this.

I guess that's one of the reasons why he's so rich it's not all that easy to do.

-----------------------

, thanks for helping my understand the strange conundrum I'm

in.

When I try to explain the full dramatic nature of my experience,

people are revolted at how audacious it sounds.

But if I express it in lesser terms, it's then seen as a lesser

experience not warranting of interest.