Re: CSM & Actos

[Guest guest]

,

Can I ask a question and answer only one question?

Ty saying you have a cytokine intensification, are you saying you are having an

allergic

reaction along with swelling of some part of your body?

The actos, weight gain and liver damage are the side effects. You should

monitor your

liver closely if you take it.

That's all I can answer, but I am going to follow this thread.

S

[Guest guest]

Hi , nice to see you on here.

What about zeolite instead of CSM? CSM can apparently be constipating

and it works by irreversibly binding 5% of your bile or something on

that level. Actos is an NF-Kappa B inhibitor (among other things) and

it helps stop the inflammatory cascade (symptoms of die off?). I think

that's a bit too many drugs.

Zeolite might be gentler and short term should be safe (I wouldn't

take longterm, as it is made of trace metals). You could alternate it

with the modifilan?

[Guest guest]

>

> What about zeolite instead of CSM? CSM can apparently be constipating

> and it works by irreversibly binding 5% of your bile or something on

> that level. Actos is an NF-Kappa B inhibitor (among other things) and

> it helps stop the inflammatory cascade (symptoms of die off?).

> Zeolite might be gentler and short term should be safe (I wouldn't

> take longterm, as it is made of trace metals). You could alternate it

> with the modifilan?

The symptoms that I am attributing to cytokine intensification are a sort of

glassy-eyed

spaciness and dull headache (both like getting the flu). Also increased sound

sensitivity,

difficulty focusing or reading, tendency to stare into space thinking nothing,

handwriting

deterioration, feelings of detachment, decreased visual contrast, vague feeling

of brain

swelling, reddened skin.

I did note some edema on my trunk. It went away the day after I stopped taking

the

cholestyramine. All the other symptoms have continued for two more days.

I experienced most of the above symptoms while taking small amounts of brown

seaweed.

The ones I didn't get with the brown seaweed were the glassy-eyed spaciness,

decreased

visual contrast and edema.

I think that some of the attributed " cytokine " symptoms may be exacerbated by my

currently being at a high altitude (9500 feet). They have receded to a large

extent when I

have gone down to 8500 feet. (I don't have typical altitude sickness symptoms

at this

point, though oddly my visual contrast has been terrible consistently for the

past two

weeks since I've been here. It was really bad eight months ago, but had become

totally

normal in the months since I moved and left behind my possessions.)

I read on this board that zeolite was effective at removing a variety of

mycotoxins from

the body, but not trichothecene (the especially bad one). I don't know if

that's accurate.

I've yet to see anything about what mycotoxins brown seaweed (Modifilan) does or

doesn't

remove.

Thanks!

[Guest guest]

...maybe let your body just enjoy itself in Telluride, feeling so

good. Maybe over time it can detox some on its own. Maybe pulse

methods, but don't push your body too hard. It has repair to do and

seems to be doing it.

I'm not a fan of CSM and certainly not of Actos.

If you do a pubmed search on zeolite you'll see interesting animal

literature on mycotoxins (adsorbing them from feed etc). So I'd think

it would work but I'd pulse it and not take it longterm as I believe,

like clays, it has aluminum and other metals in it. Supposedly these

are not absorbed by the body but over time who knows?

[Guest guest]

Lissa-I can only answer a coulpe of your questions-and advice only.

Please get properly diagnosed for Lyme-it is one of the only things I

would not change for mold-and the 2 together are very bad. Dr Shoe is

a Lyme Dr also-why don't you go see him? Is not it 4 tablespoons of

CSM-not teaspoons? why not take small doses and increase? I never

took Actos , so I cannot advise. CSM is the only thing proven to

remove mycotoxin-zeolite, I would not trust, seaweed? pleeeeze! I

know alot of people who bounce around taking all types of stuff-none

of them are better-stick with CSM-it works. I have been sick with

mold sensitivity since the first known exposure in 1979-and

chronically since 1994-I have only increased in sensitivity-now

almost anything except living out of doors makes me sick-I am

searching for anything to stop the reactions from happening-I have

had many complete recoveries, only to succumb again when exposed--

things that never bothered me before now send me over the edge. But

when I get really healthy, I am much less sensitive, and can sit in

the coffe shop, etc. But continuous exposaure will send the cykotines

blooming faster than ever.Keep trying-stay ahead of the curve.

[Guest guest]

It is neither tablespoons or teaspoons. There is a scoop that comes in the CSM.

It is four

of those a day on an empty stomach, starting first thing in the morning.

, have you been to Dr. Sho? It doesn't sound to me like you are much

better. What

have you tried?

[Guest guest]

I have followed her story on other boards. She's doing really well! In

Telluride at high altitude feels in excellent health. Compared to her

stachy house which she left she was in bed 22 hours a day.

[Guest guest]

Maybe some allergic reaction ?

--- In , " lisapetrison " <lisapetrison@...>

wrote:

>wrote:

>> The symptoms that I am attributing to cytokine intensification are a

sort of glassy-eyed

> spaciness and dull headache (both like getting the flu).

[Guest guest]

Jill, what does pulsing it mean?

, why did you pick Telluride?

>

> ...maybe let your body just enjoy itself in Telluride, feeling so

> good. Maybe over time it can detox some on its own. Maybe pulse

> methods, but don't push your body too hard. It has repair to do and

> seems to be doing it.

>

>

[Guest guest]

Then why the CSM now?

>

> I have followed her story on other boards. She's doing really well! In

> Telluride at high altitude feels in excellent health. Compared to her

> stachy house which she left she was in bed 22 hours a day.

>

[Guest guest]

>

> ...maybe let your body just enjoy itself in Telluride, feeling so

> good. Maybe over time it can detox some on its own. Maybe pulse

> methods, but don't push your body too hard. It has repair to do and

> seems to be doing it.

You may be right about not pushing. It seems to me that whenever I am somewhere

(like

here) where there's less mold exposure, I get more sensitive to it when I do hit

some.

That makes me think that maybe I'm detoxing more of it on my own from within

(since the

sensitivity might be determined by the combined external + loosened-up internal

exposures?). I hope that it's actually moving out of my body if so.

[Guest guest]

" barb1283 " <barb1283@...> wrote:

>

> , why did you pick Telluride?

> Jill, what does pulsing it mean?

We've been to Telluride before, but not during the past couple of years because

my health

took such a downturn due to the mold.

It's an interesting place to try to detox. The air is quite

pristine....whatever " plumes " of

mold drift this way seem to get blown away easily. (Those down valley basins

are very

bad, unfortunately. The plumes seem to get stuck in them and never blow

anywhere.)

I think the altitude does interact with the effects of the mold poison though.

My VCS

decline is particularly weird.

I'm kind of inclined to stay here for a while longer to see if I can make faster

detox

progress, now that I've realized that this is such a clear place. People talk

about the

desert for that, but it seems like it should work here too.

(Telluride's not perfect either though. There's one section, Mountain Village,

where there

are a bunch of new climate-controlled hotels....all built on top of one another

with no air

circulation. They managed to create a permanent " plume " right here on the

mountain!

And there was an article posted on this board a couple of days ago about the

horrific

conditions at an apartment complex in the town of Telluride. Hopefully the

whole town

won't go bad, though architects seem to be trying their best to make it happen.)

I've been pulsing (taking it for a while and then pausing for a while) all the

detox stuff

whenever I've been using it. It's too hard to keep pushing ahead with it all

the time. It

feels like my body needs a break sometimes.

[Guest guest]

> " barb1283 " <barb1283@...> wrote:

>

> Maybe some allergic reaction ?

>

> > " lisapetrison " <lisapetrison@>

> >wrote:

> >wrote:

> >> The symptoms that I am attributing to cytokine intensification are a

> >sort of glassy-eyed

> > spaciness and dull headache (both like getting the flu).

[Guest guest]

> Please get properly diagnosed for Lyme-it is one of the only things I

> would not change for mold-and the 2 together are very bad. Dr Shoe is

> a Lyme Dr also-why don't you go see him? Is not it 4 tablespoons of

> CSM-not teaspoons? why not take small doses and increase? I never

> took Actos , so I cannot advise. CSM is the only thing proven to

> remove mycotoxin-zeolite, I would not trust, seaweed? pleeeeze! I

> know alot of people who bounce around taking all types of stuff-none

> of them are better-stick with CSM-it works.

One of my CFS doctors and I have talked about lyme a lot. I tried taking

doxycycline (and

then Minocin) before I moved out of my house and got rather deathly sick. (It

seemed

clear that it was a herx rather than an allergic reaction.) My doctor's

suggestion was to

wait until my system got better as a result of addressing the mold and then go

back to the

antibiotic. I will do that at some point.

It would be nice to add Dr. Shoemaker to my collection of CFS-related doctors.

Hopefully

I will be able to do that soon.

I'm a little perplexed at why Dr. S seems adamant that people take the higher

CSM doses.

Maybe I'm misunderstanding. I any case, I'm glad to hear that other people have

used

smaller amounts successfully.

[Guest guest]

> >wrote:

> >> The symptoms that I am attributing to cytokine intensification are a

> sort of glassy-eyed

> > spaciness and dull headache (both like getting the flu).

>

Dr. Shoemaker suggests in Ch. 4 of " Mold Warriors " that the sort of glassy-eyed

look (I can't

recall his exact phrase) I've had recently is related to cytokines. It could be

an allergic

reaction though. I wonder how I could tell the difference.

[Guest guest]

> >

> > I have followed her story on other boards. She's doing really well! In

> > Telluride at high altitude feels in excellent health. Compared to her

> > stachy house which she left she was in bed 22 hours a day.

> >

>

I moved out of my house in December. I spent January-April detoxing with CSM,

though

not at anywhere near the recommended 4 scoops/packets/teaspoons dosage. It was

hard

even at a small dosage, which is why I was wondering about the Actos.

I also have been doing " extreme avoidance " as much as one can while still living

in the

suburbs of a big city (and sleeping in a regular apartment). Obviously that's

really

important. Intravenous Vitamin C (50cc's) seems to have helped a lot in

decreasing my

sensitivity and in wiping out that kind of " frozen " feeling I get a lot. I've

been

experimenting with the brown seaweed over the past few months, just to see if it

would be

easier to tolerate than the CSM. It's not been _quite_ as intense, but I'm not

sure it works

as well either.

I've been feeling better over the past couple of months....fewer symptoms and

somewhat

less sensitivity. But I didn't realize how much mold exposures back in Chicago

were

weighing me down until I got out to a high altitude in Colorado. I do feel

pretty much

normal here, but that changes really fast when I try to go even a couple

thousand feet

down from this mountain.

I wish I could get to the point where I could feel even close to this well back

in Chicago

and elsewhere. If I thought that could happen, it would be worth going

through a lot of

intensification reactions from CSM (or whatever) to get there.

I'm not sure if the sensitivity will go down enough no matter how much mold I

successfully detox though. Thoughts about whether it's worth trying would be

gratefully

appreciated.

[Guest guest]

Yes, and my scoop that comes with it is a Kitchen Aid scoop that says

one tablespoon. Years ago a man called me in the middle of the night to

find out how much to take-at that time I had to measure, because I did

not get the type that comes with the Kitchen aid scoop.I have moved out

to NM, used to be next to Dr Shoe-but my Dr knew all about his work-and

he was so backed up at that time -by the time I got an app-I was well

on the way to health-like I said -I can get healthy-just can not stay

that way unless I live outside. Now I am seeing Dr Berkson, he is mold

literate-but does not know if he can stop the reactions from re-

occurring.

, " semco_semco_semco "

<semco_semco_semco@...> wrote:

>

> It is neither tablespoons or teaspoons. There is a scoop that comes

in the CSM. It is four

> of those a day on an empty stomach, starting first thing in the

morning.

>

> , have you been to Dr. Sho? It doesn't sound to me like you are

much better. What

> have you tried?

>