Investigation PROCESS [was: Re: AirCleanerUpdate]

[Guest guest]

Kathy,

Thanks for the clarifications and that your enthusiasm is not to

sell products. This and other groups constantly struggle with

people who DO become participants and slowly insinuate

themselves into the culture so they can begin promoting what

they sell or what they believe everyone else should agree with.

Your story is another case study on THE GENERAL PROCESS

often necessary for complex situations. That when simple or first

responses don't immediately work that usually means there is no

single " fix " or " treatment " waiting around the next corner. We

must explore and experiment and be willing to risk making

mistakes to eventually (hopefully) find relief. We must be gentle

and empathetic with ourselves and with each other.

The symptoms of many conditions and illnesses overlap so it is

hard to tell which is which. What is even harder is when there is a

cluster of symptoms and complaints and each " response "

provides partial relief or temporary relief. That doesn't mean it is

wrong. It may mean it is necessary but is only a part of the total

picture.

If you break and arm and a leg, have internal injuries and an

infection only the arm can be healed with a cast on the arm. ALL

parts of the harm have to be addressed appropriate to the

situation.

Last comment: You mentioned that this group is mostly about

mold - despite its name of " Sickbuildings. "

Although mold (WDB) is the most common cause and most

frequent problem it is not the only issue with getting sick when in

buildings. A " sickbuilding " can make us sick for any or all of many

reasons. Sometimes the mold is first and sometimes the mold

comes later. I have clients and know people on this group whose

issues started with mold but ended with chemical intolerance.

We may need a different word for " mold " because a listing of all

the other components everytime becomes tiresome. Continuing

to use only " mold " perpetuates the misinformation,

misunderstanding, and supports the deniers and naysayers.

Water Damaged Buildings (WDB) is more accurate but hasn't

caught on. Any ideas on what a better word would be?

Carl Grimes

Healthy Habitats LLC

-----

Hi Corky-

I didn't say but am happy to do so, if allowed by the group moderator.

The summer of 1999 I was unknowingly being slowly poisoned.Within 6

months, the career went out the window and I was slowly noticing that I

was having increasing problems with the world and environment around

me. So it's been 10 years now that I have been living withfemale stuff,

CFIDS, MCS, 4confirmed viruses, 6confirmed autoimmune disease and

my out of state doc is still convinced I have Lyme yet it continues to

allude us in spite of all the testing.

So literally within6 months at the young age of 42,I went from an

activewell rounded life with a highpowered career to a person

struggling with health issues and trying to survive on disability

everymonth. And of course that wasonly aftera 2 year battle to win

disability. Blah Blah Blah. Sorta the same story asmany others.

Yet I amSO fortunate that it didn't take years of bouncing around from

doctor to doctor with the old " it's all in your head " scenario. I was sooo

blessed thatthrough the Endometriosis Assn, found out about Dr Sherry

. Off to see her thinking I was going to discuss someallergy shots

and walked outta there with a laundry list of things wrong with

me...lol...anyone who knows her, knows exactly what I mean.But I owe

her so muchasshe was the one who dx me w/MCS, confronted my

horrific diet, educated me about Candida and drilled it into my head the

since the gut houses the majorityof the immune system,I'd better

get/keep my gut in shape or I will never stand a chance of getting

well.And thus began this most recent leg of my life journey.

I am a DES Daughter and a member of DES Action thus a member of

their webgroup. A fellow membertold me about a fantastic

webgroup called . Not sure if this link will work as I

am signed in as a member:

/

My life is allup to me so thus began my quest to educate myself, not

knowing what an incredible webgroup I was becoming part of.At that

time and I assume it still is...a group of CFIDS/FM folks truly looking for

solutions and what I learned from them is simply amazing.Ken

Lassenstarted that group, many incredible scientists and doctors from

all overthe worldtook their time to continually sharewith the group.

This also includesthe well known/respected Rich Van Koynenburg, who

also pops up on the CF Alliance Group from time to time.He is a so

devoted to those of us with CFS and CFIDS and is tireless with sharing

hisexpertise and protocols.He is an amazing, giving man and

giftedscientist and a huge contributor tothe CFS/CFIDS community. I

was super active in the group learning and doing trials with all sorts of

protocols as I started to find out of state practitioners who could help

take me in a more scientific

direction that what Dr does. Also, I live in a very restricted state

where we can't get a lot of testing/treatments done here so out of state

isthe way a lot of us here mustgo. So found a fabulousout of state

doc,starting getting tests done andstarting building of listof now

confirmedviruses, autoimmune disorders and of course, the

obviousCFIDS andMCS. That lead me to trying a bunch of various

immune focused protocols involving everything from the basic

supplements tosome very high tech stuff. And of course, all very

expensive and most not covered by insurance..lol...

Then the time came when I needed to address my metals/chelation thus

joined both Jeff and Andy Cutler metals groups as well as the

Autism Group, well know for great sharing on various types of chelation:

http://www.pairlist.net/mailman/listinfo/metals

adult-metal-chelation/

/

And since Cutler's protocol involves so much sulfur, I then joined the

Sulfur Group too:

sulfurstories/?yguid=22307128

3

Then came some of the CFSFMExperimantal off-shoot groupsthat Ken

Lassen formed, so I joined them:

atsg/

http://www.me-cfsmethylation.com/

CFSProtocol/

AlfredblasiprotocolFMSCFS/

atsg/

CFS-Ampligen/

And of course, theCFS specific:

/

AlsoMCS specific:

MCS-CI-Heal-

Archives/?yguid=223071283

mcssafeshelterusa/?yguid=2230

71283

I also belong to femalerelated webgroups such as DES Action and others

that I would prefer not to post.

And for fun...I also belong to various webgroups supporting my

passion/collecting of myfavorite childhood tv show called Lost in Space

and all the other shows that it's creatorIrwin was involved in such

a Time Tunnel, Land of the Giants, etc.

About the only thing I haven't pursued yet is aLyme group but why

botheruntil weconfirm that I actually have it. One less dx to have, I

say...lol....I have learned/made so many friends on the other groups

who have lyme thatI pretty much know where togo such as LymeNet,

Borrascano, etc.

It sounds like it has consumed my life and to be honest foraround 4 or

soyears, it did. I became my illness. But as time has passed with many

treatments tried...that is no longer the case. I maintain various group

memberships,receivedaily digests and post from time to time.

But that all changedwith the window install last July.I was/am really

freaked that in spite of all the environmental precautions, it has

resultedin mynowtoxic house. I honestly hope that I can somehow

keep this house, that's how serious this is. Consults w/enviromental

consultants, contacting the local IAQ guy, getting folks in here to help

figure out my options...that I have already done. I already sold a

housedue to mold/natural gas and for sure, just don't want togo

through that again if at all possible. Or perhaps the message in this is

that it is time for me to relocate to a better climate and this is the only

way to boot me out of my little safety zone.Time will tellif I continue to

do my footwork.

My memberships with CIIN and HEAL are of great value but what I

really wanted and needed was tolocatean interactivewebgroup

specifically discussing positive solutions to addressing a toxic structure.

During these winter months while we areclosed up, I want to educate

myself as much as possible so when spring hits, perhaps I can step into

action on things I can do with this house that may be of help.

So started the group searchand tripped uponthis wonderful

group. And although the objective of this group focuses on mold, after

joiningand reading what you all are discussing, I felt that perhaps this

may bea positive and proactive resource for what I am dealing with right

now.And not only for what I might learn here butto alsogive back

toothers and bewilling tostep up to the plate and contribute where

applicableif it will help someone else.

That all said, I certainly hope thatnewcredible groups membersare

truly welcome here.It's difficultwhen someone new suddenly pops onto

the groupscene, particularly withbountiful exuberance...lol... There is a

tendencyfor suspicion until that new member becomes either a truepart

of thegroup or totally disappears, which isquite often the case.

Sincewearen't looking at each other eye to eye and face to face,I guess

that's justa normalwebgroup dynamic.

Please note that I have no financial or vested interest in any person,

place, groups, object or anything else mentioned in this posting.

Take Care

Kathy

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Posted by: " Tug " tug_slug@... tug_slug

Wed Jan26,2011 5:17am (PST)

Baahstun, how long have you been suffering with MCS and what other

forums did you say you belonged to?