Re: Commonality of our illness/pesticides: Rich

[Guest guest]

Rich,

I don't know if you saw Michele's post below about MCS vs.

CFIDS, but it underscores something I have definitely observed,

that CFIDS patients -- by and large -- are far more debilitated and

treatment-resistant than those with MCS, even though people

with MCS can have it really bad. People with MCS often have

significant recovery when they move to very pristine areas,

remove themselves from society, and consume only organic

foods and clean water. People who have both MCS and CFIDS,

on the other hand, seem able to curb their MCS symptoms by

doing the same, but still be burdened by severe CFIDS. This is

one thing I have definitely noticed as I have investigated moving

to a cleaner location.

Since you do think toxins become a factor eventually in all CFIDS

cases, I wonder what you think the difference is between CFIDS

and MCS -- why CFIDS patients end up so much sicker, and

even why some CFIDS patients (like me) develop severe MCS

over time and many do not.

I also wonder if it actually might be easier to measure toxins in

MCS patients than in CFIDS patients, if what Michele says is

true. I have often wondered if my own toxins are so tied up in

fatty tissue that they wouldn't even be measurable. I did not have

a positive mercury test, for example, even though I had eleven

fillings in my teeth at the time (they're gone now).

Peggy

--- In ,

> Over the past 20 years I have known more people with MCS

than people with

> CFIDS. Most of these MCS people had measurable levels of

chemicals in their

> bodies. Although I was tested twice, no measurable levels of

chemicals have been

> found. The same goes for heavy metals.

>

> The CFIDS people I have known seemed to be way more

debilitated and way

> more resistant to treatment than the MCS people, not to down

play their plight,

> and I realize there is a lot of common ground between the two.

>

> Michele

[Guest guest]

Rich,

Thanks for your thoughts on MCS. Very interesting. I still haven't been

well enough to get any blood drawn, which is why I haven't proceded to do the

pesticide testing. I really do want to do it, because I agree with you that

there would likely be some interesting results in my case. I'll let you know.

On the inhalation issue and MCS. I was amazed recently that, when my mother

visited me and I had a completely blocked nose due to congestion and the flu,

I wasn't getting as sick as I usually do from scented things around her.

Generally, I have to have my family shower over and over again when they get

here,

as they have been exposed to lots of scented people on the plane, even though

they use fragrance free products at home. Even with this process, I usually

get really sick from being around them until the scents wear off, which

sometimes doesn't happen for days, even with all the showers. Also, my mom

brought

Christmas presents, which normally would make me sick to greater and lesser

degrees (cards printed with toxic ink, clothing processed with chemicals, books,

etc.). Normally, I would get sick even from the wrapping paper and tape

smells, since my MCS is really severe. This time, I felt such incredible relief

that my stuffed-up nose seemed to be making my reactions more delayed. It was

really strange. I was still horribly sick with flu and CFIDS, but the MCS was

better. As soon as my congestion cleared up, I began reacting like crazy to

those same Christmas presents that were sitting out, and had to put many of

them away. It doesn't seem to help, for some reason, to simply hold my nose

when I'm around scented things. The congestion just seemed to thoroughly block

everything. I wish I could induce it at will.

I'm guessing in my case the increased permeability now exists at several

sites, including at the damaged olfactory nerve you mentioned, but also

elsewhere.

I still wonder why more people with CFIDS don't develop MCS over time

though, since -- as you said -- the toxin buildup would be a likely cause. I

didn't

have MCS until several years into CFIDS, and the MCS has gotten worse ever

since. I don't know why I didn't develop it initially, since there were

pesticides in my case, and I didn't have any dramatic exposures before I

developed

the actual MCS.

Peggy

In a message dated 12/28/03 11:00:07 PM,

writes:

<< I still suspect that the right lab could do an analysis of either

red blood cell phospholipid membranes or of a subcutaneous lipid

biopsy in your case, and would be able to detect fat-soluble toxins,

based on the history you have reported and on the known fat

solubility of the pesticides. I have seen the report of such an

analysis from a lab in England, and the same thing must be possible

on this side of the Atlantic.

Rich >>

[Guest guest]

Peggy,

You raise some very good questions. They are also very tough to

answer!

I don't know much about MCS. However, my wife has what would

probably be called a mild case of it, though it can be very

debilitating to her, if she is exposed to the wrong things. So I

have some familiarity with her case up close. One thing that really

strikes me is the rapidity with which she can develop a headache

when exposed to something to which she is sensitive. It only takes

a few seconds at most. From this, I infer that the substance is

entering her system by a much more rapid route than by inhalation

into the lungs, transfer to the blood, and flow of blood to the

head. I have read suggestions that in MCS the substance moves via

the olfactory nerve directly from the nasal passages to the brain,

and that this is very rapid. I suspect that this is correct. I

have also read that people with MCS can usually trace their onset

back to an event during which they had an acute exposure to a high

concentration of some volatile chemical, and that since then, they

are sensitive to a variety of volatile chemicals. I have read the

suggestion that this acute exposure damaged some sort of barrier

that people normally have, protecting their olfactory nerve. This

sounds very plausible to me. If all this is true, then perhaps

people who have MCS alone have incurred this barrier damage and are

hence sensitive to a variety of volatile chemicals, but they do not

have all the other things going on that PWCs do, such as glutathione

depletion, immune system suppression, oxidative stress, HPA axis

blunting, Krebs cycle partial blockades, etc., which would cause the

greater debilitation you mentioned.

Now what about the people who start with CFS and then later may

develop MCS? I don't know, but I suspect that perhaps the buildup

of toxins in their systems as a result of suppression of the detox

system (secondary to glutathione depletion) may eventually cause

damage to this barrier, bringing on MCS in addition. There have

been suggestions that the blood-brain barrier is damaged in CFS, I

think by you and also in a paper by A.C. Logan. Perhaps this

olfactory nerve protective barrier is similar to this. This may not

happen in all cases, as you said, perhaps depending on the toxins

and their levels, and that might explain why some PWCs develop MCS,

and some don't.

I don't know about the relative ease of measurement of toxins in

PWCs and in people with MCS. I guess I would suspect that it would

be opposite to what has been suggested. That is, I would suspect

that the distribution of toxins in CFS would be more systemic, and

thus easier to measure, whereas in MCS it might be more confined to

the nervous system. Of course, this is all based on a lot of

hypothesizing, above. I don't think anyone really understands the

whole story in MCS, either, unfortunately.

I still suspect that the right lab could do an analysis of either

red blood cell phospholipid membranes or of a subcutaneous lipid

biopsy in your case, and would be able to detect fat-soluble toxins,

based on the history you have reported and on the known fat

solubility of the pesticides. I have seen the report of such an

analysis from a lab in England, and the same thing must be possible

on this side of the Atlantic.

Rich

> Rich,

>

> I don't know if you saw Michele's post below about MCS vs.

> CFIDS, but it underscores something I have definitely observed,

> that CFIDS patients -- by and large -- are far more debilitated

and

> treatment-resistant than those with MCS, even though people

> with MCS can have it really bad. People with MCS often have

> significant recovery when they move to very pristine areas,

> remove themselves from society, and consume only organic

> foods and clean water. People who have both MCS and CFIDS,

> on the other hand, seem able to curb their MCS symptoms by

> doing the same, but still be burdened by severe CFIDS. This is

> one thing I have definitely noticed as I have investigated moving

> to a cleaner location.

>

> Since you do think toxins become a factor eventually in all CFIDS

> cases, I wonder what you think the difference is between CFIDS

> and MCS -- why CFIDS patients end up so much sicker, and

> even why some CFIDS patients (like me) develop severe MCS

> over time and many do not.

>

> I also wonder if it actually might be easier to measure toxins in

> MCS patients than in CFIDS patients, if what Michele says is

> true. I have often wondered if my own toxins are so tied up in

> fatty tissue that they wouldn't even be measurable. I did not

have

> a positive mercury test, for example, even though I had eleven

> fillings in my teeth at the time (they're gone now).

>

> Peggy

[Guest guest]

Peggy,

FYI, as part of the protocol for testing for chemicals my doctor made me do

saunas a couple of days in a row in an attempt to mobilize the toxins into the

blood. Still found nothing.

Michele

> Rich,

> Thanks for your thoughts on MCS. Very interesting. I still haven't been

> well enough to get any blood drawn, which is why I haven't proceded to do the

> pesticide testing. I really do want to do it, because I agree with you that

> there would likely be some interesting results in my case. I'll let you know.

>

> On the inhalation issue and MCS. I was amazed recently that, when my mother

> visited me and I had a completely blocked nose due to congestion and the flu,

> I wasn't getting as sick as I usually do from scented things around her.

> Generally, I have to have my family shower over and over again when they get

here,

> as they have been exposed to lots of scented people on the plane, even though

> they use fragrance free products at home. Even with this process, I usually

> get really sick from being around them until the scents wear off, which

> sometimes doesn't happen for days, even with all the showers. Also, my mom

brought

> Christmas presents, which normally would make me sick to greater and lesser

> degrees (cards printed with toxic ink, clothing processed with chemicals,

books,

> etc.). Normally, I would get sick even from the wrapping paper and tape

> smells, since my MCS is really severe. This time, I felt such incredible

relief

> that my stuffed-up nose seemed to be making my reactions more delayed. It was

> really strange. I was still horribly sick with flu and CFIDS, but the MCS was

> better. As soon as my congestion cleared up, I began reacting like crazy to

> those same Christmas presents that were sitting out, and had to put many of

> them away. It doesn't seem to help, for some reason, to simply hold my nose

> when I'm around scented things. The congestion just seemed to thoroughly

block

> everything. I wish I could induce it at will.

>

> I'm guessing in my case the increased permeability now exists at several

> sites, including at the damaged olfactory nerve you mentioned, but also

elsewhere.

> I still wonder why more people with CFIDS don't develop MCS over time

> though, since -- as you said -- the toxin buildup would be a likely cause. I

didn't

> have MCS until several years into CFIDS, and the MCS has gotten worse ever

> since. I don't know why I didn't develop it initially, since there were

> pesticides in my case, and I didn't have any dramatic exposures before I

developed

> the actual MCS.

>

> Peggy

>

> In a message dated 12/28/03 11:00:07 PM,

> writes:

>

> << I still suspect that the right lab could do an analysis of either

> red blood cell phospholipid membranes or of a subcutaneous lipid

> biopsy in your case, and would be able to detect fat-soluble toxins,

> based on the history you have reported and on the known fat

> solubility of the pesticides. I have seen the report of such an

> analysis from a lab in England, and the same thing must be possible

> on this side of the Atlantic.

>

> Rich >>

[Guest guest]

I am one of those who has some MCS after several years with CFS. While I have

been testing ok on gluathione tests the past few years (after mercury removal

and a lot of whey protein and other supplements), I still find that taking whey

protein has a someone immediate postiive effect if I am going to be around

chemicals. What I mean by somewhat immediate is that it helps the same day. Is

there some mechanism that could explain how testing gives normal levels, but

having additional whey protein the same day as chemical exposure would still

help the MCS? Does the whey raise something besides glutathione, or perhaps

something first on the way to gluathione that might help with the MCS?

Doris

Now what about the people who start with CFS and then later may

develop MCS? I don't know, but I suspect that perhaps the buildup

of toxins in their systems as a result of suppression of the detox

system (secondary to glutathione depletion) may eventually cause

damage to this barrier, bringing on MCS in addition.

[Guest guest]

Peggy,

Thanks for the information. That's really interesting about the

suggestion of other possible access routes beside the olfactory

nerve. I'm not sure what they would be. Perhaps the eyes or the

mouth allow things to come in the " back door " and still access the

olfactory nerve.

I'm glad to hear that you still plan to go ahead with blood testing

for pesticides.

I don't have a good explanation for why you didn't develop MCS

initially. Perhaps the toxins you absorbed initially gradually

depleted your glutathione, and this removed protection from whatever

barrier is involved in protecting the brain from gaseous toxins.

Rich

> Rich,

> Thanks for your thoughts on MCS. Very interesting. I still

haven't been

> well enough to get any blood drawn, which is why I haven't

proceded to do the

> pesticide testing. I really do want to do it, because I agree

with you that

> there would likely be some interesting results in my case. I'll

let you know.

>

> On the inhalation issue and MCS. I was amazed recently that, when

my mother

> visited me and I had a completely blocked nose due to congestion

and the flu,

> I wasn't getting as sick as I usually do from scented things

around her.

> Generally, I have to have my family shower over and over again

when they get here,

> as they have been exposed to lots of scented people on the plane,

even though

> they use fragrance free products at home. Even with this process,

I usually

> get really sick from being around them until the scents wear off,

which

> sometimes doesn't happen for days, even with all the showers.

Also, my mom brought

> Christmas presents, which normally would make me sick to greater

and lesser

> degrees (cards printed with toxic ink, clothing processed with

chemicals, books,

> etc.). Normally, I would get sick even from the wrapping paper

and tape

> smells, since my MCS is really severe. This time, I felt such

incredible relief

> that my stuffed-up nose seemed to be making my reactions more

delayed. It was

> really strange. I was still horribly sick with flu and CFIDS, but

the MCS was

> better. As soon as my congestion cleared up, I began reacting

like crazy to

> those same Christmas presents that were sitting out, and had to

put many of

> them away. It doesn't seem to help, for some reason, to simply

hold my nose

> when I'm around scented things. The congestion just seemed to

thoroughly block

> everything. I wish I could induce it at will.

>

> I'm guessing in my case the increased permeability now exists at

several

> sites, including at the damaged olfactory nerve you mentioned, but

also elsewhere.

> I still wonder why more people with CFIDS don't develop MCS over

time

> though, since -- as you said -- the toxin buildup would be a

likely cause. I didn't

> have MCS until several years into CFIDS, and the MCS has gotten

worse ever

> since. I don't know why I didn't develop it initially, since

there were

> pesticides in my case, and I didn't have any dramatic exposures

before I developed

> the actual MCS.

>

> Peggy

[Guest guest]

Doris,

This may result from a temporary buildup of cysteine in your blood.

Cysteine itself can bind to some toxins. Perhaps it heads them off

as they come into the blood stream, before they are able to produce

toxic effects in tissues.

Another possibility is that perhaps glutathione undergoes a

temporary buildup in your blood, and this does the same thing

suggested above. Glutathione is compartmentalized in the body, so

measurements of its level in one place (such as in the liver,

inferred from a Great Smokies detox panel) may be different from its

level in another compartment, such as the white blood cells (from a

Spectracell test) or the red blood cells or the blood plasma (as in

an Immunosciences test).

I'm just guessing here, of course.

Rich

> I am one of those who has some MCS after several years with CFS.

While I have been testing ok on gluathione tests the past few years

(after mercury removal and a lot of whey protein and other

supplements), I still find that taking whey protein has a someone

immediate postiive effect if I am going to be around chemicals.

What I mean by somewhat immediate is that it helps the same day. Is

there some mechanism that could explain how testing gives normal

levels, but having additional whey protein the same day as chemical

exposure would still help the MCS? Does the whey raise something

besides glutathione, or perhaps something first on the way to

gluathione that might help with the MCS?

>

> Doris

> Now what about the people who start with CFS and then later may

> develop MCS? I don't know, but I suspect that perhaps the

buildup

> of toxins in their systems as a result of suppression of the

detox

> system (secondary to glutathione depletion) may eventually cause

> damage to this barrier, bringing on MCS in addition.

>

>

[Guest guest]

Hi all,

I have something to ask on this subject. I have MCS. Whenever I am exposed to a

chemical that I am sensitive to, the smell stays at my nose for long time. It

does not go away.Let's assume I am exposed to paint odor. Odor is at my nose

even if I change the place or go outside. It takes long time for it to go

away.Does that happen to you?

Also I can smell the odor other people can not.I had wood finishing problem at

my home some time ago. I was able to smell the odor for about 8 months whereas

nobody coming to my flat smelled it. I was specially asking them if they smelled

anything, They were saying `no` to me. Hard to explain but I hope you

understand.

Thanks.

Nil

Re: Commonality of our illness/pesticides: Rich

Peggy,

You raise some very good questions. They are also very tough to

answer!

I don't know much about MCS. However, my wife has what would

probably be called a mild case of it, though it can be very

debilitating to her, if she is exposed to the wrong things. So I

have some familiarity with her case up close. One thing that really

strikes me is the rapidity with which she can develop a headache

when exposed to something to which she is sensitive. It only takes

[Guest guest]

Just one note about the second part of my note. It is not that my smell

sensitivity is heightened in general. I can not smell many things. I can not get

food smell or smell of flowers. It is only the odors of the substances that I am

sensitive to. It is also not just smell,it is in my brain with all accompaniying

symptoms like feeling depressed,stomach turn,etc,.

Nil

Re: Commonality of our illness/pesticides: Rich

Peggy,

You raise some very good questions. They are also very tough to

answer!

I don't know much about MCS. However, my wife has what would

probably be called a mild case of it, though it can be very

debilitating to her, if she is exposed to the wrong things. So I

have some familiarity with her case up close. One thing that really

strikes me is the rapidity with which she can develop a headache

when exposed to something to which she is sensitive. It only takes

[Guest guest]

Whenever I am exposed to a chemical that I am sensitive to, the

smell stays at my nose for long time.

Yes Nil, this happens to me. I think it says in our nose hairs

because I now wash out my nose after smelling the odor and I don't

smell it anymore. Yes, I smell things in my trailer that other people

did not. I think this normal with us.

Bob

[Guest guest]

Hi Nil,

I have MCS too and I believe I understand this. I read somewhere

(sorry I can't recall where, so can't back this up), that people who

are chemically sensitive were found to be able to detect chemical

smells that were below the threshold for people who were not

chemically sensitive. I will try to find this.

Anyway, I have also found that I can often smell chemicals that

other people can't. Sometimes I don't smell the fragrance a person

is wearing, instead I smell what must be the chemical carrier for

it.

Laurie

[Guest guest]

Hi

I can't explain how you would still smell it if you left the site. That sounds

like your brain is remembering the smell. But ougassing from paint and stains

and such can take years, so it doesn't surprise me at all that you would still

smell it 8 months later, even if nobody else could. Lately many things I bring

into the house have to go outside for at least several weeks before I can stand

being around them. Often my husband cannot detect any smell at all. In the

past few weeks I have had to do this with chair cushions, catalogs, wicker file

cabinets, and several other things.

Doris.

[Guest guest]

Just opinion on my part here, but while I think it can be a brain

thing at times, it can also be that the chemicals may may linger in

your nasal passages. Some of those chemical carriers are designed

to be long lasting. This has happened to me as well, it must be

common to those of us with MCS.

This may seem odd, but our daughter has found that sniffing coffee

beans helps her to clear the offending smell out of her nose, after

she has removed herself from a toxic site. I haven't tried that

yet, but hey, whatever works.

I agree about outgassing. Many new things have had to be banished

from our home until they were tolerable.

Laurie

[Guest guest]

>>>>>This may seem odd, but our daughter has found that sniffing coffee

> beans helps her to clear the offending smell out of her nose, after

> she has removed herself from a toxic site. <<<<<

Laurie,

Many stores that carry essential oils and perfumes have a bowl of coffee beans

on the counter. Taking a whiff does clear the nose of the previous aroma, for

those sampling several in a row. Wow, I never considered it working for a

synthetic smell!! Does your daughter carry a container of beans with her or take

a whiff when she gets home? Hmmm, wonder if that's why I love the smell of

coffee beans so much??

Katrina

[Guest guest]

Rich,

I remember Gregg talking about the DMSO approach when I first called to

order Sparx. How does it work exactly? Does DMSO improve the skin's ability

to absorb other nutrients, or just B12? How is it used?

Peggy

[Guest guest]

Hi Katrina,

I didn't know that essential oil shops did that! Our daughter

doesn't carry coffee beans around with her, but that's a good idea.

Usually when we're out, she will ask to go to a coffee shop, so she

can get the coffee smell in her nose (there are coffee places

everywhere around here) or when she gets home she'll go to the

kitchen to sniff ours. I think it would help a person to assess

their situation regarding an exposure. I don't know why I haven't

tried it myself, but I will now.

Maybe that's why I love the smell of coffee beans too <g>.

Laurie

[Guest guest]

Exactly,

I have some organic smell in my house.Nobody smells it but me.(From the wood

finishing done 4 years ago.)The smell makes me feel very upset and my stomach

turns. May be our brain memorizes the smell at the first exposure than gives

exagerated response to the same chemical later.

Thanks

Nil

Re: Commonality of our illness/pesticides: Rich

Hi Nil,

I have MCS too and I believe I understand this. I read somewhere

(sorry I can't recall where, so can't back this up), that people who

are chemically sensitive were found to be able to detect chemical

smells that were below the threshold for people who were not

chemically sensitive. I will try to find this.

Anyway, I have also found that I can often smell chemicals that

other people can't. Sometimes I don't smell the fragrance a person

is wearing, instead I smell what must be the chemical carrier for

it.

Laurie

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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

[Guest guest]

I was exposed to oil-paint last year at my vacation.My landlord was painting the

balkony.I would get very sick with the paint. Go for a walk at fresh air.It

would take long time(at least half an hour) for the smell to go away from my

nose. It could be that this is something related to making new memories.May be

my brain is not being able to remove old memories and create some space for new

memories.Actually similar thing happens to me with emotional and intellectual

experiences,too.Any new experience keeps coming to my mind over and over again.

Related to Amygdala?

Thanks

Nil

Re: Re: Commonality of our illness/pesticides:

Rich

Hi

I can't explain how you would still smell it if you left the site. That

sounds like your brain is remembering the smell. But ougassing from paint and

stains and such can take years, so it doesn't surprise me at all that you would

still smell it 8 months later, even if nobody else could. Lately many things I

bring into the house have to go outside for at least several weeks before I can

stand being around them. Often my husband cannot detect any smell at all. In

the past few weeks I have had to do this with chair cushions, catalogs, wicker

file cabinets, and several other things.

Doris.

[Guest guest]

Peggy,

I think the best source of information on what's known about DMSO is

at Dr. Stanley 's website: www.dmso.org

It does work with a wide variety of uncharged substances. I don't

think it's completely understood how it works at the molecular level.

Rich

> Rich,

>

> I remember Gregg talking about the DMSO approach when I

first called to

> order Sparx. How does it work exactly? Does DMSO improve the

skin's ability

> to absorb other nutrients, or just B12? How is it used?

>

> Peggy