Re: My Symptoms Triggered

[Guest guest]

Hi Robin,

 

I have MCS, get those 'no fun' symptoms much too often.  I got so I am afraid

to clean.  Baking soda and water seem to be the only safe cleaners for me.

 

On the suitcase-- did you put the suitcase outside in the sun when you got it? 

It helps new things offgas faster if you do that. 

 

....Corky

 

I was told all this is lyme. I now do not trust an all or nothing diagnosis..

even an all mold one. ....smell of new suitcase.......

Robin

[snipped]

[Guest guest]

Robin...

Reading your post, I can sense your realization and despair; it seems that you

are now living the reality of those of us who become hypersensitive to countless

smells/allergens.  All of a sudden, the situation you had thought could

be compartmentalized and " conquered " reveals that some of us battle a foe not

so

predictable as we once thought.  I am reminded of my first realization that it

wasn't just the air/toxins in my workplace anymore.  My home used to be my

haven; I just needed to avoid the awful air in my office.  Then one day I

entered the laundry room of my apartment building; the smells of detergent,

previously not obnoxious to me and actually kind of pleasant, triggered an

episode that almost caused me to go to the ER!  (I now avoid the ER, as now

most

medications cause adverse reactions!)  Keep in mind that this multiple

sensitivity just began in May.  Before that, my lung and chest pain

and tachycardic heartrate signalled the presence of mold and seemed my primary

symptoms of exposure.  Now, multiple systems began flaring.  The day after

the

laundry room incident, I ate something with wheat, something I had previously

digested with no problem.  Out of nowhere, I now experienced almost MS-like

symptoms.  I could not walk; my ankle flopped and foot lost feeling; I couldn't

form a sentence.  I thought I had had a stroke.  My fingernails turned blue,

my

arms/calves/hands/feet were mottled, freezing, swollen, and purplish.  It's

hard

for anyone who hasn't experienced these severe symptoms to recognize that small,

seemingly innocent triggers present very real dangers now and can even cause a

monthlong spiral into both physical and emotional/cognitive symptoms that can

literally take over your days.

I am so sorry.  It seems that our body reaches a point of " no return. "   Once

allergic to mold or toxins recognized as dangerous, our immune system now seems

almost  paranoid, quickly identifying previously " safe "  life elements as

the enemy, triggering a plethora of symptoms that range from depression to

edema

to migraines to painful joint inflammation to difficulty speaking to inability

to walk/balance issues to growths and rashes. 

You mention depression.  As a mental health person, I am especially intrigued

by

the symptoms that seem to mimic bipolar disorder; from the overwhelming

depression and lethary to the irritability and racing thoughts that come with

mania.  I'm really wondering what role lithium plays, if any, in this.  I've

heard serotonin mentioned by group members and see that as addressing the

depressive symptoms.  However, the perseveration and manic symptoms are yet

another story, for me, at least.  You have labeled yourself as having OCD

symptoms.  What do you mean by that exactly?  It's certainly a disorder we

don't

fully understand, and I see myself as a " research subject " of sorts.  Like all

of us in this group, I want to know more, so I can at least learn to live this

new life as fully as I can.  

These symptoms, for me, at least, have an onset and a reduction without a

pattern I can identify yet.  Again, I could somehow manage the

lung/heart/immune

system symptoms.  For me, the most difficult are these affective and cognitive

reactions that seem to alter my very personality at times.  (I'm over 50, so I

don't think my traits/temperaments are still developing, right?)  I do know

that

I am beginning to keep a diary to see if there is some pattern to this that

could be tied to the endocrine system somehow.  If I know the pattern, maybe I

can plan my life and my ability to function better.    All of a sudden, for

no

reason I can identify, these symptoms will pass, and I will feel better, both

physically and emotionally. 

Robin, I am so sorry.  Once repeated exposures create what our immune system

regards as a " danger zone " of potential threats, it seems that what was once a

single or compartmentalized set of dangers becomes much more varied and

unpredictable.  If it were just mold or just chemicals, life would be so much

more manageable; we can better avoid and manage these dangers.  Carl has

addressed this evolution with one of our group members who focuses on mold only;

Carl has suggested that this group member is living the very evolution you and I

have undergone--it's no longer just MOLD.  For me, for the past three years,

mold has been the threat; since May, that sensivity has grown exponentially, it

seems.

Thanks to Jack, Ritchie, Carl, Dr. Hope, Dr. Rea, Dr. Kilburn, and others who

are blazing new diagnostic and treatment trails for those of us suffering from

exposure of some kind.  Until someone has lived this, it's almost impossible

to

comprehend the expanse and mercurial nature of this illness.  Even some who

have

suffered mold exposure and whose immune systems have not shifted may not truly

understand how overwhelming it can become.  My thoughts are with you...sally

________________________________

From: listspub <listspub@...>

Sent: Sat, September 4, 2010 2:02:08 AM

Subject: [] My Symptoms Triggered

 

I was told all this is lyme. I now do not trust an all or nothing diagnosis..

[Guest guest]

never a culture.. Im assuming a PCR? Western blot and cd57 marker.. cd 57 was

low but I am not sure cd 57 is not also lowered by other infections though most

LLMDs swear by it.

yes many tick bites and I think all too often lyme is treated when it is not the

major stressor.. you can have an exposure and the bacteria not be a stressor. I

guess the same could be said for mold. HLA type of not.

It seems there are always more factors to consider.

Robin

--- In , " Jack Thrasher, Ph.D. " <toxicologist1@...>

wrote:

>

> Lyme disease bacterium is carried by deer ticks. If you have never had a tick

infestation you probably do not have Lyme's disease. However, we are exposed to

the bacterium and therefore many individuals have antibodies against the

bacterium. Antibodies only means exposure not infection. If you have been

diagnosed with Lyme disease ask the doctor if they cultured for Borrelia

afzelii.

[Guest guest]

Thanks, Corky.. This suitcase set still smells after having inside the house for

monhts..maybe that will do the trick.. I am looking for safer alternative. Any

ideas?

The inflammation went away this am once I feel asleep but the days it didnt. I

understand the conern about cleaning!

I am noticing this more since the stachy was removed. I had noticed the sinues

swelling into brain years ago and no explanation.. lumped into lyme diagnosis

which I dont think it is from.. I can see environmental triggers now.

Robin

>

> Hi Robin,

>  

> I have MCS, get those 'no fun' symptoms much too often.  I got so I am afraid

to clean.  Baking soda and water seem to be the only safe cleaners for me.

>  

> On the suitcase-- did you put the suitcase outside in the sun when you got

it?  It helps new things offgas faster if you do that. 

>  

> ...Corky

>

[Guest guest]

Hello, Members and Robin!  I want to apologize for my use of the term " point of

no return. "   Usually more optimistic by nature, I'm really experiencing pain

and

symptom flares over the past week, and that seems to have colored my vocabulary

choices.  Didn't mean to sound so utterly hopeless, which I am not!  Good

thoughts to all!  Sally

________________________________

From: listspub <listspub@...>

Sent: Sat, September 4, 2010 12:46:59 PM

Subject: [] Re: My Symptoms Triggered

 

never a culture.. Im assuming a PCR? Western blot and cd57 marker.. cd 57 was

low but I am not sure cd 57 is not also lowered by other infections though most

LLMDs swear by it.

yes many tick bites and I think all too often lyme is treated when it is not the

major stressor.. you can have an exposure and the bacteria not be a stressor. I

guess the same could be said for mold. HLA type of not.

It seems there are always more factors to consider.

Robin

[Guest guest]

Sally-don't even think about it! We have all been there. Personally I like to

use the phrase " mold has sucked my will to live " but point of no return works

too!

It's hard to be optimistic sometimes because the MCS and the mold really do a

number on your head psychologically- it's such a neurotoxin that it physically

depresses you. (Does that make sense?)

Anyway, everyone is allowed a little boohoo time. Hope you feel better soon!

Surella

>

> Hello, Members and Robin!  I want to apologize for my use of the term " point

of

> no return. "   Usually more optimistic by nature, I'm really experiencing pain

and

> symptom flares over the past week, and that seems to have colored my

vocabulary

> choices.  Didn't mean to sound so utterly hopeless, which I am not!  Good

> thoughts to all!  Sally

>

[Guest guest]

Janet, do you mind if I ask what meds you are taking? This time around I am

seriously thinking of trying something. I just know what is going to

happen-depression, I'll stop eating, I'll sleep all the time. I tried Xanax (2

10mg tablets) which kind of worked in that it made me mellower and very tired.

I'm looking for something that will keep me from being depressed. Is that even

possible?

>

> yeah I know Im on a lot of meds. depression got bad

> Janet

>

>

[Guest guest]

Sure I take lots xanax klonopin cymbalta geodon

In a message dated 9/5/2010 9:27:03 P.M. Eastern Daylight Time,

surellabaer@... writes:

Janet, do you mind if I ask what meds you are taking? This time around I am

seriously thinking of trying something. I just know what is going to

happen-depression, I'll stop eating, I'll sleep all the time. I tried Xanax (2

10mg tablets) which kind of worked in that it made me mellower and very

tired. I'm looking for something that will keep me from being depressed. Is

that even possible?