Re: Simple outline of CSM protocol please

[Guest guest]

That is great that your doc is working with you. Almost impossible to find here

in Arizona. And he is actually reading the book,wow. Loni

Crandall <camel2002@...> wrote: My Chronic Fatigue Syndrome doc is

willing to prescribe CSM since it’s

pretty clear that my 3 ½ years in a leaky home was associated with dramatic

overall deterioration with my health, after previous improvements due to

Traditional Chinese Medicine (mostly medical qigong treatments and

individualized home exercises/meditations), herbal bloodthinners, long-term

antibiotics, immune-system boosters, etc.

I am now in a dry house, with HEPA filter in furnace, etc, still coping with

the aftermath of the move, with a friend staying with me 24/7 to help me. I

am a 51-year-old female, 160 lbs, ill with CFS for 10 ½ years, with a very

long history of a) allergies (incl. dust mites, molds, foods, grasses) and

intermittent serious infections from organisms that are of concern

usually only to the immune-compromised.

My MD is only ¼ of the way through Mold Warriors but already is very

impressed and is talking about the book and Shoemaker’s diagnostic and

treatment approaches with his partners in two medical practices.

However, my MD is not clear on safe and efficacious dosing with CSM, since

a) treating for mold toxins is off-label and my health is fragile. I have

told him what a good resource this mailing list is, and he has asked me to

request info from Shoemaker’s patients and others following Shoemaker’s

protocol, re starting dose and schedule of ramping up or remaining on a

constant dose with CSM.

Anyone with this info, please contact me, on-list or off-list, and I will

take the info to my MD and we will begin treatment ASAP.

Thank you.

[Guest guest]

I think your (licensed medical) doctor should be able to call Dr.

Shoemaker's office directly and ask them questions..

(410) 957-1550

Dr. Shoemaker's treatment is not just CSM, it involves a fair amount

of testing that is done after you have been on CSM (and, ideally, out

of the poison environment) for a few weeks. MSH, HLA-DR, MMP9 aMBP are

some of the tests I remember him mentioning in the book.

The idea is to determine how much damage has been done - some of it is

addressable.. some isn't..

BUY DR SHOEMAKERS BOOK.. Nobody here is a doctor (except for the good

Dr. Schaller who is I AM SURE too busy to read everything that passes

through here) and none of us can with any fidelity explain what is

clearly a complicated situation..

The cholestyramine is the first step, and it appears to help almost

everyone (? at least it seems that way to me???) - but after that,

you need more than what most HMO doctors are willing to provide, time

wise.. So perhaps you need to PUSH them to take it further.. do the

tests..

We need an ORGANIZED national movement to PUSH HMOS to recognize the

FINANCIAL SENSE in treating mold patients effectively.. so that our

lives wont be ruined by this stuff..

The kinds of multiple ailments that mold poisoning seems to create

make people look like terrible risks to insurance carriers and in many

states, that leads to a situation where employers wont hire them..

ruining their lives, financially..

THIS IS A SERIOUS PROBLEM... so we need effective treatment to keep

the costs down.. so we don't end up marginalized and eventually,

homeless because of this..

Not all of us have the resources to go on indefinitely without real,

health-insurance-providing employment!

[Guest guest]

I was just thinking about this myself to introduce Dr. Shoemaker's

protocol for being poisioned by molds. Maybe I can buy him the book

and send a letter with it. I'm going to get the book too.

Rhonda

My Chronic Fatigue Syndrome

doc is willing to prescribe CSM since it's

> pretty clear that my 3 ½ years in a leaky home was associated with

dramatic

> overall deterioration with my health, after previous improvements

due to

> Traditional Chinese Medicine (mostly medical qigong treatments and

> individualized home exercises/meditations), herbal bloodthinners,

long-term

> antibiotics, immune-system boosters, etc.

>

>

>

> I am now in a dry house, with HEPA filter in furnace, etc, still

coping with

> the aftermath of the move, with a friend staying with me 24/7 to

help me. I

> am a 51-year-old female, 160 lbs, ill with CFS for 10 ½ years, with

a very

> long history of a) allergies (incl. dust mites, molds, foods,

grasses) and

> intermittent serious infections from organisms that are of

concern

> usually only to the immune-compromised.

>

>

>

> My MD is only ¼ of the way through Mold Warriors but already is very

> impressed and is talking about the book and Shoemaker's diagnostic

and

> treatment approaches with his partners in two medical practices.

>

>

>

> However, my MD is not clear on safe and efficacious dosing with

CSM, since

> a) treating for mold toxins is off-label and my health is

fragile. I have

> told him what a good resource this mailing list is, and he has

asked me to

> request info from Shoemaker's patients and others following

Shoemaker's

> protocol, re starting dose and schedule of ramping up or remaining

on a

> constant dose with CSM.

>

>

>

> Anyone with this info, please contact me, on-list or off-list, and

I will

> take the info to my MD and we will begin treatment ASAP.

>

>

>

> Thank you.

>

>

>

>

>

>

>

>

[Guest guest]

Rhonda,

Mold Warriors is a honkin' big book-intimidating to tackle for many of us

who are sick and brain-fogged-and intimidating to busy doctors too, no

matter how committed they are to upgrading their knowledge.

One of the reasons my doc wanted to borrow my copy, instead of waiting for a

brand-new copy to arrive, was that I had used a non-bleeding highlighter pen

(same kind used for bible study) to highlight what I felt was much of the

key information in the 600+ page book. While my doc intended to read or at

least skim every page, he could check back or flip ahead to key chapters or

appendices with some confidence that most of the critical info was going to

be yellow highlighted.

If you or you and your supporters (family member, friend) could go through

one copy of Mold Warriors thoroughly, highlighting key content, and then

just duplicate the highlighting in a second copy, you MIGHT speed your doc's

reading through this very readable but very big book.

Some health advisors, like my MD, are in practice with other partners, and

can divide up the duties of going to conferences, reading textbooks, reading

periodicals, and then report back on key info (theories, diagnostic

techniques, treatments) at partners' meetings. This is what my current doc

and my previous doc do, so all 4 partners can sort of keep up with new

medical developments, and also have a passing knowledge of what's happening

with the most challenging patients in the practice, if one of them ends up

covering a partner's practice during a vacation or conference trip.

Yes, <sigh>, I am one of the MOST challenging patients my MD and his MD

partners and ND associate have met, and that's saying a lot, given that all

the practitioners in the clinic take on a lot of patients that have

flummoxed other health practitioners in the province. The good news is that

I am slowly proving to these Sherlock Holmes MDs that one area they have

ignored when evaluating their patients, esp their chronic patients, is air

quality and especially mold exposure. I am currently more hopeful of more

informed advice now that my MD has not only started reading Mold Warriors

but has been speaking to at least one of his partners about the information

in the book. These docs are up to speed about so many issues that other docs

in the province could care less about, from heavy metal poisoning to

nutritional support of the body to hypercoagulation to systemic infections,

but it's past time they got up to speed about molds.

rhondaleokitty@... said:

I was just thinking about this myself to introduce Dr. Shoemaker's

protocol for being poisoned by molds. Maybe I can buy him the book

and send a letter with it. I'm going to get the book too.

Rhonda