Re: Re: CFS sufferers listen up!! What has worked for me!!

[Guest guest]

,

I respect your battle and experiences and yes, I have read mold warriors and

your story.

I consider you to be the ultimate " Mold Warrior " and hold you in great

esteem. We are all here to help each other. Like I stressed in my post - my

combination helped me to feel better - no cure - but better.

I completely agree that avoidance is #1 - people will NEVER get better

without doing that - NEVER. (EX: A broken leg will never heal if you keep

beating on it ! )

However to " help the body along " and support the immune system, good

nutrition, supplements, hydration and rest have to be taken seriously. I

firmly believe that the mold destroys many systems and pathways (like the GI

tract), that after exposure has been eliminated, the body can use the

" boost " . I too have turned into a " Mold Warrior " and have done extensive

research into what kills yeast in the body, what supports the immune system,

what prevents or slows DNA mutation etc. Several medical studies support

this.

I have created a web page that lists all of these with supporting

information. I'll post the link shortly.

Again - the first priority is to throw every dime you have into getting away

from this insidious, hideous, horrible, deadly stuff. It absolutely turns a

body into a toxic waste dump. Mold kills. Period.

Angelika

Fellow Moldie

Northern California

[] Re: CFS sufferers listen up!! What has worked for

me!!

> " Angelika wrote:

> > I didn't even read your post and JUST sent off a long email about

> what I have been taking ! My list / research lead me to the exact

> same conclusions as you and am taking nearly the exact same

> regimen !!! Coincidence?

> >

> > Natren (this stuff is incredible) , Alpha Lapoic Acid, Glutathione

> boosters, Silymarin (Milk Thistle), Magnesium, Biotin, NAC (N-

> Acetyl Cysteine)

> > ....and more ... I mean our lists are nearly identical !!!

> >

> > Everything you said is exactly what my researched showed helps and

> what I take now.

> > Amazing.

> > I feel better too ! My CSF and mold symptoms have gone as well.

> (Outside of re-exposure hits)

> >

> > Fellow Moldie

> > Angelika

> > Northern California

>

> Great stuff, but not exactly a coincidence.

> Someone should do a survey of the shopping bags full of vitamins and

> supplements that ALL CFSers have in their kitchens...

> It's all the same stuff.

> We were doing all these very things, plus a few more, fifteen years

> ago without much success. The health food stores are selling Natren

> like hot cakes but it hasn't done people much good if they haven't

> moved out of a moldy place. I remember when Bounous first

> introduced the first Glutathione precursor Whey Protein " Immunocal " .

> Tasted terrible.

> I finally got sick and tired of PAYING for all these vitamins when

> they weren't doing much good, and since being " (Outside of re-

> exposure hits) " made more difference than anything else, just

> proposed to Dr that I do THAT alone.

> Bailed out of the ampligen program and have been climbing Mt

> Whitney (and others) ever since.

> As for the NOTICEABLE difference that " altitude " and " going to the

> mountains " has on people, see Mold Warriors for an explanation of

> the EPO " Erythropoietin " release induced by barometric pressure

> shift that and I took advantage of as described in our

> stories.

> At least for me, this made a real difference when all the vitamins

> did not.

> I'm not trying to stomp on people's vitamin concepts, it's just

> that we've all gone down this road and paid thousands of dollars

> when it might just be that staying outside of mold exposure, which

> you just may have to do anyway - could concentrate your economic

> resources on the most helpful course of action.

> -

>

>

>

>

>

>

> FAIR USE NOTICE:

>

>

>

[Guest guest]

I got the impression that some of the people reading Pizza Guy's list of

remedies thought that he was listing ingredients for Shoemaker's protocol. He

wasn't. Schaller apparently has his own ideas and his own approaches to things.

They are (from what I can see) kind of a hybrid of CSM and some of the more

common ideas within the CFS community about treating CFS with supplements. But

I'm sure he could speak for himself on that. Anyway - the two docs are clearly

not in lockstep on this. So please don't assume one speaks for the other, or

that any given patient's treatment represents the whole idea in either case.

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

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[Guest guest]

erikmoldwarrior <erikmoldwarrior@...> wrote:

Great stuff, but not exactly a coincidence.

Someone should do a survey of the shopping bags full of vitamins and

supplements that ALL CFSers have in their kitchens...

This is very much in line with my own experience. In fact, on my attorney's

advice, I actually do keep all the bottles and jars in big trash bags. On a bad

day, I can't even lift one of those feather light bags of empty plastic bottles

- representative of many thousands of dollars worth of medicines and supplements

(those listed, and others). It's not that the bags are filled with completely

worthless things, though I have hated that bag at times when I was broke and

needed food and saw the evidence of the cash I wish I still had. There were some

things I used that had some benefit. Not many, but a few. I have a couple of

ideas about that:

One is that various OTC supplements may be helpful to people in certain physical

states. CFS, despite the official description, is NOT a single physical state.

It's a " syndrome " - a collection of dozens of states that change so rapidly that

the efficacy of any given treatment is nearly impossible to spot subjectively -

especially if you're doing " supplement cocktails " . And objective results are

almost never offered. Which thing or combination of things worked? For how long?

To say you have CFS is merely to say you feel like hell most of the time.

The other idea (I didn't invent this line of thought myself, by any means!) is

that this illness definitely goes through stages, and those stages depend on a

number of factors - age, gender, overall toxin load, present exposures,

individual genetic make-up, comorbidity (other illnesses, which may or may not

have been diagnosed), and probably a lot of things we haven't yet considered. If

somebody tells me they took " X " and they feel great or they feel rotten, I

totally believe them! Then I wait and watch, because neither condition tends to

last forever, though I always hope the good days will. Then I look at my trash

bags again. They are a museum. They are my own personal reality check. And they

are a reference library for all the stuff I still can't remember on my own -

names, dates, dosages, etc. The fact that I still can't remember without looking

probably says a lot on its own. The fact that I may have to wait days or

sometimes weeks before I can heft that hefty bag to look it up

says a lot, too. So. The only thoroughly disproven treatment for CFS is that of

throwing large sums of money at it. Target your expenditures, demand results.

It might actually be that if you catch this illness early enough, you can do a

lot more with supplements than you can do later on. It's hard to say, because

very few of us get an accurate diagnosis until years have passed. Studies show

that a small percentage of people with CFS make at least a partial remission in

about 2 years no matter what they do. Are those Moldies? No way to tell. But

that's part of the problem. CFS is almost a garbage can diagnosis (which makes

my trash bags fairly...poignant .

When you know the cause (mold), you can be treated for mycotoxicosis or any of

the other mold-related illnesses you got. We know what those are, where they

come from, and can get objective results. Maybe not instant results (as with me,

since I've been sick from this stuff for years), but measurable results. My

Hefty Bags are ultimately what drove me to demand these kinds of results. My

illness, my cash, my rules. Results have to be objectively measurable and

progressive in their improvements. These demands are tied closely to Shoemaker's

protocol and philosophy in the way he practices.

Anything else I do at this point is only a stopgap - like painkillers. They

might work right now, and I might need them right now, but they don't produce

any lasting improvements. They only allow me to survive the journey to repaired

health. If feeling better right now was the only goal for me, well then, heroine

and cyanide both work, too. They will even end the illness. But the outcome is

not exactly, uhhh...optimal. Ending the illness is NOT the goal. Restored health

is the goal. Biggggg difference!

I'm not really disparaging trying other things. Some things I have tried worked

pretty well on a specific problem or at a specific time. Just please don't be

thinking that there is this magic list somewhere that's gonna get you well. If

there was, we'd all be well by now.

Congrats to Pizza Guy and Mrs. Pizza Guy. I really hope you caught it early

enough with the right stuff! One of my greatest wishes is that more people could

get properly diagnosed sooner so as to hopefully avoid long term damage and more

difficult treatment.

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

__________________________________________________

[Guest guest]

Hi PG -

I think that's flat out wonderful! It really does make me genuinely happy

whenever I hear people are finding their way out of this mess.

Thanks for clarifying what you're doing. I only posted all the cautions to avoid

confusion. There are so many people on this list who desperately want to get

well, any way they can find. Having little or nothing to lose will make you real

brave or real crazy, or both. I've seen people with CFS (still hear about 'em,

all the time) do some crazy things, and put themselves through some unbelievably

weird, expensive, and downright dangerous and painful treatment plans on

nothing more than a rumor. It's a real zoo out there. Has been for years.

Some can't get to Dr. Shoemaker or Dr. J, and they post asking for " the

protocol' without realizing these guys are tailoring everything they do to suit

each patient, and making alterations as they learn more themselves. I would like

nothing better than to see a whole lot more docs get up on this subject and

learn to treat this stuff! They are sorely needed.

Serena

www.freeboards.net/index.php?mforum=sickgovernmentb

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