Re: Model for CFS primary factors. / Autism and Chelation

[Guest guest]

This brings up a question that has been on my mind lately - the DAN

protocol is for children, and DAN docs are successfully chelating out

the level of mercury that children received from a few vaccinations.

This must be a VERY small load relative to the load PWC must have from

amalgams, years of eating tunafish, many more vaccinations (in some

cases). So, is it realistic for us to expect that we can get all of our

metals out as easily as the DAN children?

I am worried that what will happen when many PWC start heavy chelating

is that their glutathione levels will get much, much worse, due to the

increased level of circulating mercury during the chelation (mercury can

block the glutathione pathway). Maybe if we really could get it all

safely out rapidly we would be fine. But I think this idea, if it is

right, suggests caution, and that we may need a different chelation

strategy than that used in the DAN protocol.

For example maybe for some of us, those with the highest body burden of

metals and the worst liver genetics, a wiser strategy is a life-long

low-level chelator designed to keep the blood relatively free from

metals, taking out just as much as comes in, but not so much that the

body continually is trying to dump excessive amounts of metal.

Something safe like EDTA, or maybe some combination of mild chelators

and binders.

--Kurt

Re: Re: Model for CFS primary factors.

Hi Vickie,

I am at the same place as you. Reading the DAN! procedures for

clelating and also interested in Andy Cutler's idea. I just wish

everyone agreed on how to do it, so we could get on with it and get it

out!

Janet

in San Diego

Vickie <vickie77077@...> wrote:

I am getting in at the end of this discussion of mercury toxins,

environmental toxins, vs infection toxins, etc, but I just want to

say that I just purchased Andy Cutlers book on Mercury chelation. I

had already decided that Mercury chelation was primary for me after

reading the DAN! book and mercury protocol and some of the Amy Yasko

articles.

But when I read Andy Cutlers chapter on how mercury affects you I was

just really blown away. He provides a detailed discussion of the

symptoms and tge effect on enzymes and chemistry, etc. I just

thought " Wow, this is so much of my illness. I really have to focus

on this as much as possible. "

I may be the last person on this list to read Cutler's book, but I am

*So Glad* that I am reading it. I have also printed off the DAN!

protocol and will continue to read as much as I can about Yasko's

program.

I just wish there was someway to speed up chelation, because I feel

like I am starting to run out of time.

Wishing you all enlightenment and success in tackling your illneses.

Vickie

> > >

> > > Dear list,

> > >

> > > I have been researching CFS for 5 years in the forms of

> books,

> > journal articles, web articles, CFS lists and discussing CFS

> with

> > every health professional I meet. I also had a mild form of

CFS

> > myself, treat patients with CFS/FM in my practice and did my

> honours

> > degree thesis on CFS. I thought I would share my current

> opinion on

> > the primary factors in CFS. I feel that majority of those

with

> CFS/FM

> > have an inter-relating mix of the 4 following issues which

are

> the

> > main underlying primary factors in CFS:

> > > -Chronic infections

> > > -Toxicity (heavy metals, synthetic chemicals, mold, etc.)

> > > -Glutathione depletion

> > > -Dysbiosis

> > >

> > > I feel that attempts to get well should focus largely on

the

> above

> > points. Of all the different practitioners I have read about

> over the

> > years who treat CFS, plus in my own experience and those

> shared on

> > various CFS lists I have been on over the years, I feel

> treating the

> > above factors achieves the most solid and lasting benefits.

> > >

> > > The factors listed below I believe are (for the most part)

> more of a

> > secondary nature. That's not say they are not important to

> consider in

> > treatment, but I believe they as a whole produce less lasting

> and

> > significant benefits, many of which are caused by the primary

> factors

> > listed above:

> > > -Nutrient imbalances

> > > -Hormone & neurotransmitter imbalances

> > > -Sleep problems

> > > -Psychological issues

> > > -Hyper-coagulation

> > > -Food sensitivities

> > >

> > > This is a generalised model and there are certainly

> exceptions. Just

> > to illustrate how to above model applies, for example if a

> person has

> > a chronic lyme infection, mercury toxicity, glutathione

> deficiency and

> > dysbiosis, then correcting magnesium deficiency would not be

> expected

> > to make a huge difference.

> > >

> > > Regards,

> > >

> > > Blake Graham, B.Sc (Honours)

> > > Integrative Nutritionist

> > > Perth, Western Australia

> > > http://www.nutritional-healing.com.au/

> > >

> > >

> > >

> > >

[Guest guest]

Hi Kurt,

I am 3 months into following Dr. Yasko's program and I agree that taking EDTA

is a good way of keeping on top of the metals a bit. I am starting to actually

dump Mercury and it is not from the EDTA but from killing off some viruses and

bacteria when they release the metals.

The problem with long term EDTA is that you may become depleted of essential

minerals . . which started happening to me.I monitor my urine for these every 3

or 4 weeks to be sure I keep the essentials in balance.

The bugs hold on to LOTS of metals so I believe it is important to address

them along with taking the ED TA and Malic Acid for aluminum excretion.

Thanks for all your input.

Best Wishes!

Sue T

" Kurt R. " <kurt@...> wrote:

For example maybe for some of us, those with the highest body burden of

metals and the worst liver genetics, a wiser strategy is a life-long

low-level chelator designed to keep the blood relatively free from

metals, taking out just as much as comes in, but not so much that the

body continually is trying to dump excessive amounts of metal.

Something safe like EDTA, or maybe some combination of mild chelators

and binders.

--Kurt

[Guest guest]

HI Blake,

I can not take the Essential Daily Defense because it has sulfur ingredients

ie. MSM, garlic etc. Someone may not know this if they did not have their

Liver, methylation, and sulfation genetic snps tested. I have tried many

different supplements and finally decided to try to get to the bottom of my

detox and glutithione problems by having these snps tested and working with Dr.

Yasko to override these mutations. I am still waiting for some of my results

This is my answer so far after 18 years of having CFS, LYME, HG toxicity, etc

and trying many many avenues.

Just my two cents.

Thanks for everything . . . I enjoy reading your posts.

Sue T

Maybe (like you say) a better solution is a more gentle chelator like Dr. Garry

Gordons Essential Daily Defense, working up to the therapeutic dose which is 1

tablet per 10 pounds of body weight (up to about 16/day), as a lifelong

strategy, combined with efforts to get glutathione levels up.

Blake

[Guest guest]

Hi Sue T,

< ...but from killing off some viruses and bacteria when they release

the metals. >

Viruses and bacteria are not discrete, in and of themselves?

They " release " toxic metals in the body? I'm confused. Can you (or

anyone) explain, please?

Thanks ahead of time,

in Champaign IL

>

> Hi Kurt,

>

> I am 3 months into following Dr. Yasko's program and I agree that

taking EDTA is a good way of keeping on top of the metals a bit. I am

starting to actually dump Mercury and it is not from the EDTA but

from killing off some viruses and bacteria when they release the

metals.

>

> The problem with long term EDTA is that you may become depleted

of essential minerals . . which started happening to me.I monitor my

urine for these every 3 or 4 weeks to be sure I keep the essentials

in balance.

>

>

> The bugs hold on to LOTS of metals so I believe it is important

to address them along with taking the ED TA and Malic Acid for

aluminum excretion.

>

> Thanks for all your input.

>

> Best Wishes!

>

> Sue T

>

>

[Guest guest]

Hi Blake,

Dr. Yasko's work evolves so fast that her last Genetics Bypass book may

already be a bit out dated. I know she is coming out with a new supplements book

very soon.

By Yasko also has a General Vitamin that is similar to Dr. Gordon's but has

even more sulfur ingredients. I have difficulty using that also. I can only

handle 1/4 of a tab.

Thanks for you input. Have you studied all her books and her newest videos. It

is hard to get a true grasp on her work without totally immersing yourself into

it. I try and track every post on her forum even though it does not all apply to

me.

Best wishes,

Sue T

Blake Graham <blanket@...> wrote:

Hi Sue,

I have read Dr. Yasko's genetics book but still believe that the major causes of

sulfur intolerance are dysbiosis and molybdenum deficiency. Dr. Garry Gordon has

written that people who can't tolerate garlic generally are able to tolerate

Essential Daily Defense. It is not known exactly why, but he believes it has

something to do with the synergy of all the different ingredients in the

product. All that said for a number of different reasons you (or another person)

may not tolerate EDD, I don't know. Dr. Yaskos RNA detox formulas interest me

and appear to be effective.

blake

Re: Re: Model for CFS primary factors. / Autism

and Chelation

HI Blake,

I can not take the Essential Daily Defense because it has sulfur ingredients

ie. MSM, garlic etc. Someone may not know this if they did not have their

Liver, methylation, and sulfation genetic snps tested. I have tried many

different supplements and finally decided to try to get to the bottom of my

detox and glutithione problems by having these snps tested and working with Dr.

Yasko to override these mutations. I am still waiting for some of my results

This is my answer so far after 18 years of having CFS, LYME, HG toxicity, etc

and trying many many avenues.

Just my two cents.

Thanks for everything . . . I enjoy reading your posts.

Sue T

Maybe (like you say) a better solution is a more gentle chelator like Dr.

Garry Gordons Essential Daily Defense, working up to the therapeutic dose which

is 1 tablet per 10 pounds of body weight (up to about 16/day), as a lifelong

strategy, combined with efforts to get glutathione levels up.

Blake

[Guest guest]

Kurt, Boyd Haley in his presentations says:

1) Amalgams are high exposure high risk. IE they have a lot of mercury

and you do get it into your system because it stays in your teeth and

you're chewing for years and years

2) Thimerosal in vaccine is low exposure high risk. IE there's a small

amount but its in a highly toxic form and is injected directly into

you. And they don't just get a few vaccines--kids get a total of 32

vaccines by the time they're six these days, including hepatitis B in

the first 24 hours (which is insane, as Haley says, are they having

sex or using dirty drug needles as newborns? Because that's how you

get exposed to it)

3) Fish are high exposure low risk. They have usually sequestered it

in their fat and it tends to pass through you. Not that you can't get

it from eating tons of fish, but anyway.

I think kids are always more resilient in terms of recovery from

stuff. But look at --he's chelating just fine. Some can, some

can't. It probably depends on your load of metals and your detoxifying

ability which varies.

> > > >

> > > > Dear list,

> > > >

> > > > I have been researching CFS for 5 years in the forms of

> > books,

> > > journal articles, web articles, CFS lists and discussing CFS

> > with

> > > every health professional I meet. I also had a mild form of

> CFS

> > > myself, treat patients with CFS/FM in my practice and did my

> > honours

> > > degree thesis on CFS. I thought I would share my current

> > opinion on

> > > the primary factors in CFS. I feel that majority of those

> with

> > CFS/FM

> > > have an inter-relating mix of the 4 following issues which

> are

> > the

> > > main underlying primary factors in CFS:

> > > > -Chronic infections

> > > > -Toxicity (heavy metals, synthetic chemicals, mold, etc.)

> > > > -Glutathione depletion

> > > > -Dysbiosis

> > > >

> > > > I feel that attempts to get well should focus largely on

> the

> > above

> > > points. Of all the different practitioners I have read about

> > over the

> > > years who treat CFS, plus in my own experience and those

> > shared on

> > > various CFS lists I have been on over the years, I feel

> > treating the

> > > above factors achieves the most solid and lasting benefits.

> > > >

> > > > The factors listed below I believe are (for the most part)

> > more of a

> > > secondary nature. That's not say they are not important to

> > consider in

> > > treatment, but I believe they as a whole produce less lasting

> > and

> > > significant benefits, many of which are caused by the primary

> > factors

> > > listed above:

> > > > -Nutrient imbalances

> > > > -Hormone & neurotransmitter imbalances

> > > > -Sleep problems

> > > > -Psychological issues

> > > > -Hyper-coagulation

> > > > -Food sensitivities

> > > >

> > > > This is a generalised model and there are certainly

> > exceptions. Just

> > > to illustrate how to above model applies, for example if a

> > person has

> > > a chronic lyme infection, mercury toxicity, glutathione

> > deficiency and

> > > dysbiosis, then correcting magnesium deficiency would not be

> > expected

> > > to make a huge difference.

> > > >

> > > > Regards,

> > > >

> > > > Blake Graham, B.Sc (Honours)

> > > > Integrative Nutritionist

> > > > Perth, Western Australia

> > > > http://www.nutritional-healing.com.au/

> > > >

> > > >

> > > >

> > > >

[Guest guest]

They actually think the body holds onto the metals during infection.

There could be a couple of reasons. One, mercury in particular is an

antibacterial (that's why they put it in the vaccines, so they can

have a vial of 10-use vaccine, that will not get bacterial

contamination) so perhaps in a way the body is trying to hold onto the

mercury to keep the infection down? The other possiblity, or both

could be true, is that the microbes somehow sequester or even create

metals (I have read of this) to alter the terrain, make it more

hospitable to them.

> >

> > Hi Kurt,

> >

> > I am 3 months into following Dr. Yasko's program and I agree that

> taking EDTA is a good way of keeping on top of the metals a bit. I am

> starting to actually dump Mercury and it is not from the EDTA but

> from killing off some viruses and bacteria when they release the

> metals.

> >

> > The problem with long term EDTA is that you may become depleted

> of essential minerals . . which started happening to me.I monitor my

> urine for these every 3 or 4 weeks to be sure I keep the essentials

> in balance.

> >

> >

> > The bugs hold on to LOTS of metals so I believe it is important

> to address them along with taking the ED TA and Malic Acid for

> aluminum excretion.

> >

> > Thanks for all your input.

> >

> > Best Wishes!

> >

> > Sue T

> >

> >

>

>

>

>

>

> 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]

>

> Hi ,

>

> I'm not sure if the mechanism is understood but Dr. Amy Yasko and

Garry Gordon have found that after treating chronic infections,

chelation is smuch more effective. I think that the chronic

infections may be some how impairing our detoxification methods and

the effctiveness of chelating agents.

>

> Blake

Hi Blake

What do you consider is the best way to treat chronic infections?

Would you choose a natural route or antibiotics?

Thanks

Pam

[Guest guest]

Hi Kurt,

Kids with autism have mercury from a variety of sources, some from vaccines,

some from mothers amalagums, some from eating fish themselves, others from fish

the mother ate while pregnant and breastfeeding. Maybe those with CFS do have

more mercury than kids with Autism, I don't really know. If they do I would

expect that a key reason is adults have had more time to accululate these

metals.

Both kids with Autism and adults with CFS have glutathione depletion. Kids with

Autism also have metlothionein dysfunction, which is the bodies other major

mercurt detox protein along with glutathione. They work together. There are so

many reports of adverse reactions to DMSA by kids with Autism, maybe due to a

combination of the glutathione/metalothionein depletion.

I do wish there was more of a general concensous on how the best way to go about

chelation is.

Maybe (like you say) a better solution is a more gentle chelator like Dr. Garry

Gordons Essential Daily Defense, working up to the therapeutic dose which is 1

tablet per 10 pounds of body weight (up to about 16/day), as a lifelong

strategy, combined with efforts to get glutathione levels up.

Blake

RE: Re: Model for CFS primary factors. / Autism

and Chelation

This brings up a question that has been on my mind lately - the DAN

protocol is for children, and DAN docs are successfully chelating out

the level of mercury that children received from a few vaccinations.

This must be a VERY small load relative to the load PWC must have from

amalgams, years of eating tunafish, many more vaccinations (in some

cases). So, is it realistic for us to expect that we can get all of our

metals out as easily as the DAN children?

I am worried that what will happen when many PWC start heavy chelating

is that their glutathione levels will get much, much worse, due to the

increased level of circulating mercury during the chelation (mercury can

block the glutathione pathway). Maybe if we really could get it all

safely out rapidly we would be fine. But I think this idea, if it is

right, suggests caution, and that we may need a different chelation

strategy than that used in the DAN protocol.

For example maybe for some of us, those with the highest body burden of

metals and the worst liver genetics, a wiser strategy is a life-long

low-level chelator designed to keep the blood relatively free from

metals, taking out just as much as comes in, but not so much that the

body continually is trying to dump excessive amounts of metal.

Something safe like EDTA, or maybe some combination of mild chelators

and binders.

--Kurt

[Guest guest]

Hi Sue,

I have read Dr. Yasko's genetics book but still believe that the major causes of

sulfur intolerance are dysbiosis and molybdenum deficiency. Dr. Garry Gordon has

written that people who can't tolerate garlic generally are able to tolerate

Essential Daily Defense. It is not known exactly why, but he believes it has

something to do with the synergy of all the different ingredients in the

product. All that said for a number of different reasons you (or another person)

may not tolerate EDD, I don't know. Dr. Yaskos RNA detox formulas interest me

and appear to be effective.

blake

Re: Re: Model for CFS primary factors. / Autism

and Chelation

HI Blake,

I can not take the Essential Daily Defense because it has sulfur ingredients

ie. MSM, garlic etc. Someone may not know this if they did not have their

Liver, methylation, and sulfation genetic snps tested. I have tried many

different supplements and finally decided to try to get to the bottom of my

detox and glutithione problems by having these snps tested and working with Dr.

Yasko to override these mutations. I am still waiting for some of my results

This is my answer so far after 18 years of having CFS, LYME, HG toxicity, etc

and trying many many avenues.

Just my two cents.

Thanks for everything . . . I enjoy reading your posts.

Sue T

Maybe (like you say) a better solution is a more gentle chelator like Dr.

Garry Gordons Essential Daily Defense, working up to the therapeutic dose which

is 1 tablet per 10 pounds of body weight (up to about 16/day), as a lifelong

strategy, combined with efforts to get glutathione levels up.

Blake

[Guest guest]

Hi ,

I'm not sure if the mechanism is understood but Dr. Amy Yasko and Garry Gordon

have found that after treating chronic infections, chelation is smuch more

effective. I think that the chronic infections may be some how impairing our

detoxification methods and the effctiveness of chelating agents.

Blake

Re: Model for CFS primary factors. / Autism and

Chelation

Hi Sue T,

< ...but from killing off some viruses and bacteria when they release

the metals. >

Viruses and bacteria are not discrete, in and of themselves?

They " release " toxic metals in the body? I'm confused. Can you (or

anyone) explain, please?

Thanks ahead of time,

in Champaign IL

>

> Hi Kurt,

>

> I am 3 months into following Dr. Yasko's program and I agree that

taking EDTA is a good way of keeping on top of the metals a bit. I am

starting to actually dump Mercury and it is not from the EDTA but

from killing off some viruses and bacteria when they release the

metals.

>

> The problem with long term EDTA is that you may become depleted

of essential minerals . . which started happening to me.I monitor my

urine for these every 3 or 4 weeks to be sure I keep the essentials

in balance.

>

>

> The bugs hold on to LOTS of metals so I believe it is important

to address them along with taking the ED TA and Malic Acid for

aluminum excretion.

>

> Thanks for all your input.

>

> Best Wishes!

>

> Sue T

>

>

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]

Hi Pam,

First correct nutrient imabalances (esp vitamin D & zinc), optimise diet,

optimise gut flora, increase glutathione, clean up environment, identify food

sensitivities, etc. all factors which relate strongly to immune function.

Secondly my preference is strong immune modulators, combinations of high dose

transfer factor & medicinal mushrooms complexes (Cordyceps, Reiishi, Shiitake),

herbal anti-microbials, etc. Possibly combine this with anticoagulanats like

nattokinase, bromelain, heparin, etc. to break down coagulation products which

protect infections.

You could possibly combine the above with a more conventional treatment (e.g.

antibiotics, antvirals), however I feel if you don't take every step you can to

improve immune integrity then you will end up straight back where you were

originally, maybe worse as you would have damaged your gut flora and increased

likelyhood of antibiotic resistance. The infections we have are oppurtunistic so

we need to remove the reason why they were allowed to thrive and treat them.

Blake

Re: Model for CFS primary factors. / Autism and

Chelation

>

> Hi ,

>

> I'm not sure if the mechanism is understood but Dr. Amy Yasko and

Garry Gordon have found that after treating chronic infections,

chelation is smuch more effective. I think that the chronic

infections may be some how impairing our detoxification methods and

the effctiveness of chelating agents.

>

> Blake

Hi Blake

What do you consider is the best way to treat chronic infections?

Would you choose a natural route or antibiotics?

Thanks

Pam

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]

Chronic infections are toxin factories, so treating the toxins

without treating the source, is like trying to clean up a toxic

waste spill while ignoring the fact that it's still spilling.

You need to attack the infection at its source

Chronic, entrenched infections gum up your blood. Good blood flow is

essential to your health, to your immune system.

To attack the infection at its source we need to treat anything

that's blocking the treatment from reaching it, i.e. inflammation,

sticky blood, necrosis. If you can get rid of the source of the

infection, the body will do a pretty good job of detoxing itself,

although you can help with various products, like charcoal,

chlorella, and numerous other detoxification supports.

If you find a natural remedy to eradicate antibiotic resistant bugs,

please do tell me. And I don't mean grapefruit seed extract, or

oregano oil or garlic or immune system builders like Immune Pro. I

mean something that can really do the job. Right now, I think salt,

bleach and betadine are the most effective natural or otc

antimicrobials. Salt can't kill every thing, and unfortunately the

other two are only marginally effective as topical treatments.

People, please, I beg you. If you're going to spend time

treating " infections " , first try to figure out what they are.

Identify the bug, do the research and see what can REALLY kill it

(and hope it's not already resistant). Stop wasting your time with

stuff that doesn't have a chance.

penny

> >

> > Hi ,

> >

> > I'm not sure if the mechanism is understood but Dr. Amy Yasko

and

> Garry Gordon have found that after treating chronic infections,

> chelation is smuch more effective. I think that the chronic

> infections may be some how impairing our detoxification methods

and

> the effctiveness of chelating agents.

> >

> > Blake

>

> Hi Blake

>

> What do you consider is the best way to treat chronic infections?

> Would you choose a natural route or antibiotics?

>

> Thanks

> Pam

>

[Guest guest]

--I agree with the general sentiment expressed here about the need

to treat the source of infections. There is a division of opinion on

this board on this issue which is difficult to reconcile.

Klinghardt et al are saying broadly the same. Literally all these

supplements are going down the drain!

Sunny thoughts,

Wallace

- In , " penny " <pennyhoule@...>

wrote:

>

> Chronic infections are toxin factories, so treating the toxins

> without treating the source, is like trying to clean up a toxic

> waste spill while ignoring the fact that it's still spilling.

>

> You need to attack the infection at its source

>

> Chronic, entrenched infections gum up your blood. Good blood flow

is

> essential to your health, to your immune system.

>

> To attack the infection at its source we need to treat anything

> that's blocking the treatment from reaching it, i.e.

inflammation,

> sticky blood, necrosis. If you can get rid of the source of the

> infection, the body will do a pretty good job of detoxing itself,

> although you can help with various products, like charcoal,

> chlorella, and numerous other detoxification supports.

>

> If you find a natural remedy to eradicate antibiotic resistant

bugs,

> please do tell me. And I don't mean grapefruit seed extract, or

> oregano oil or garlic or immune system builders like Immune Pro. I

> mean something that can really do the job. Right now, I think

salt,

> bleach and betadine are the most effective natural or otc

> antimicrobials. Salt can't kill every thing, and unfortunately the

> other two are only marginally effective as topical treatments.

>

> People, please, I beg you. If you're going to spend time

> treating " infections " , first try to figure out what they are.

> Identify the bug, do the research and see what can REALLY kill it

> (and hope it's not already resistant). Stop wasting your time with

> stuff that doesn't have a chance.

>

> penny

>

>

>

>

> > >

> > > Hi ,

> > >

> > > I'm not sure if the mechanism is understood but Dr. Amy Yasko

> and

> > Garry Gordon have found that after treating chronic infections,

> > chelation is smuch more effective. I think that the chronic

> > infections may be some how impairing our detoxification methods

> and

> > the effctiveness of chelating agents.

> > >

> > > Blake

> >

> > Hi Blake

> >

> > What do you consider is the best way to treat chronic

infections?

> > Would you choose a natural route or antibiotics?

> >

> > Thanks

> > Pam

> >

>

[Guest guest]

Hi Wallace,

I have been considering trying the salt and c protocol for some time,

and am now very close to embarking on it- unless I hear of any good

reasons why I should not, of course.

Never been hasty, so I have been gathering up information about this

protocol and musing on it

- Salt n C seems to claim to have the ability to clear up ALL

infections and infestations -even the ones they dont have names for

yet!

Basically I have been ill for so long that it is the only protocol I

stand any hope of being able to afford.

so please tell me; do you think their claims for it are true, or not?

all the best

<wpswallace@...> wrote:

>

> --I agree with the general sentiment expressed here about the need

> to treat the source of infections. There is a division of opinion

on

> this board on this issue which is difficult to reconcile.

> Klinghardt et al are saying broadly the same. Literally all these

> supplements are going down the drain!

>

> Sunny thoughts,

> Wallace

[Guest guest]

lolololol!

Hi thank you Kurt, I suspected as much and will bear that in mind )

best wishes

> IF you do start salt/c, you might also want to join LymeStrategies and

> read through the files and maybe some posts. But I would take the

> claims that Salt/C is killing every bug in the body with . a grain of

> salt.

>

> --Kurt

[Guest guest]

>

And I don't mean grapefruit seed extract, or

> oregano oil or garlic or immune system builders like Immune Pro. I

> mean something that can really do the job.

>

> People, please, I beg you. If you're going to spend time

> treating " infections " , first try to figure out what they are.

> Identify the bug, do the research and see what can REALLY kill it

> (and hope it's not already resistant). Stop wasting your time with

> stuff that doesn't have a chance.

>

***Hi Penny - Not all of us have " bacterial " infections which I get

the impression you believe we ALL have. Every person on this list has

gone the traditional route of seeing their family doctor and going

through the standard medical tests. It has gotten us nowhere so we

are on our own trying to find answers.

We are not wasting our time trying different products as some people

here have gotten good results. and CS for instance have had

great results using whey protein. Sara has improved by a good 80%

since trying different treatments.

Of all the tests I have had done over the past 15 years, glutathione

has been the only thing that has come up low. Everything else has

been normal. Therefore, I feel it is in my best interest to follow

the glutathione theory. I certainly do not feel that I am wasting my

time, in fact I believe that this is absolutely the best use of my

time at present.

Take care.

Bernie

[Guest guest]

Bernie,

I think virtually all of us do have several infections CAUSING these

diseases. I suspect the main infections are tick borne such as

borrelia, rickettsia and a few others. The trouble is that the tests

being run, if any are run, are almost totally inaccurate.

So I agree with Penny. I guess the point where I might disagree would

be that some alternative treatments may actually be effective -things

such as garlic and others. We just don't know.

What tests for borrelia have you had run????

a Carnes

>

>

> And I don't mean grapefruit seed extract, or

> > oregano oil or garlic or immune system builders like Immune Pro.

I

> > mean something that can really do the job.

> >

> > People, please, I beg you. If you're going to spend time

> > treating " infections " , first try to figure out what they are.

> > Identify the bug, do the research and see what can REALLY kill it

> > (and hope it's not already resistant). Stop wasting your time

with

> > stuff that doesn't have a chance.

> >

>

>

> ***Hi Penny - Not all of us have " bacterial " infections which I get

> the impression you believe we ALL have. Every person on this list

has

> gone the traditional route of seeing their family doctor and going

> through the standard medical tests. It has gotten us nowhere so we

> are on our own trying to find answers.

>

> We are not wasting our time trying different products as some

people

> here have gotten good results. and CS for instance have had

> great results using whey protein. Sara has improved by a good 80%

> since trying different treatments.

>

> Of all the tests I have had done over the past 15 years,

glutathione

> has been the only thing that has come up low. Everything else has

> been normal. Therefore, I feel it is in my best interest to follow

> the glutathione theory. I certainly do not feel that I am wasting

my

> time, in fact I believe that this is absolutely the best use of my

> time at present.

>

> Take care.

>

> Bernie

>

[Guest guest]

> ***Hi Penny - Not all of us have " bacterial " infections which I

get the impression you believe we ALL have. Every person on this

list has gone the traditional route of seeing their family doctor

and going through the standard medical tests. It has gotten us

nowhere so we are on our own trying to find answers.

> >

> Of all the tests I have had done over the past 15 years,

glutathione has been the only thing that has come up low. Everything

else has been normal. Therefore, I feel it is in my best interest to

follow the glutathione theory. I certainly do not feel that I am

wasting my time, in fact I believe that this is absolutely the best

use of my time at present.

Yes, well good luck with that.

First, I didn't say that " everyone has infections " . I believe, with

very good reason, that a very large number of pwc do have

infections, but you don't have to believe it. I'm writing to those

who think it's possible.

Second, you're completley missing my point by saying you've gone

the " standard testing " route.

That IS the whole focus of my frustration. Standard testing is

completely inadequate. Not only is the cause of our problems being

missed due to the lack of simple lab tests, this negligence is

contributing to a rapidly growing problem of untreatable chronic

infections and disease.

Example: A child has an ear infection. Goes to the doc. He looks in

her ear. Say's it's infected. But infected with what? Is the

bacteria identified? No. Is it cultured? No. Tested for antibiotic

sensitivities? No. Rather than doing a culture or simple gram stain,

identifying the bacteria and finding its sentivities to antibiotics

for proper treatment, the doctor simply guesses. Gives the child a

few days worth of the latest antibiotic being pushed by the drug

rep, and that's that. The kid gets better (or so it appears) and no

follow up testing is bothered with to make sure the bug is gone.

Nothing. And ignorance is bliss. For a while. Repeat the identical

scenario with the ENT/sinus infection or the Dentist/oral

surgeon/dental infection.

Do some research on bacterial resistance and you'll see why so many

people are chronically sick. I'm not talking about stealth bacteria

that we can't see. I'm talking about everyday, easy to identify

ordinary strains that are almost impervious to everything. This is

an inconceivably serious problem that the large health organizations

don't try to publicize, because medicine can't cope with the problem

they created.

Profits are now driving and perpetuating the problem and it will

continue to escalate until the public becomes informed and stands up

and starts demanding better care. The same kind of basic testing and

treatment that a dog can get at the vet, we should be able to get.

The same tests that the old time docs used to do in their offices,

but discontinued once corporate labs & insurance companies came into

the picture. If we could get this kind of preventative care from our

early days, we would have far fewer sick people today.

Sadly, we, nor our children, can get this most basic of testing and

care until we're sick enough to be hospitalized. By then the

infection has created so many toxins, and has caused so much

inflammation that our organs or glands or tissue or bone has been

damaged so severely, our gut dysbiosis so destroyed, our veins so

scarred, our brains under so much pressure, hormones so out of

balance, and perhaps even the inflammation has now become cancer or

serious heart disease, and we're so sick that we're more or less

done for.

But THAT's when we finally get recognized by the medical

establishment. When it's too late.

You can think I'm crazy, but there are thousands of research

articles to support it, and NO ONE is paying any attention, least of

all our doctors.

by the way, you don't have to tell me what everyone on this list has

done. I've been here for many years, have done almost all of it

myself (including glutathione), and guess what, I mean no disrespect

but it's the same stuff just recycled, new versions of old

supplements. It's like a soap opera. Tune in years later and you

still know the story line.

If you really want to know the monumental severity of the problem

we're dealing with here, start punching into PubMed the

words " bacteria " along with your choice of antibiotic resistance,

inflammation, chronic osteomyelitis, chronic sinusitus. porphyria,

dental, intracranial hypertension, biofilms, and any autoimmune

disease you can think of. Pick any health topic, and add the word

bacteria or infection and you'll be amazed at the reams of

scientific research that links chronic illness to bacteria. What's

most amazing of all, almost nobody who actually treats patients

seems to be paying attention.

It's this apathy that's allowing ignorant doctors to continue making

us sick, then refuse to treat the very problems they're creating.

penny

P.S. I truly want the medical landscape to change. And we have to

start at the ground level, or everything else will be a waste.

That's why I'm advocating for better testing. But another easy thing

we could all do is instruct our families to have autopsies performed

after our deaths. I think people will be appalled at the amount of

internal damage, necrosis, etc. that is found due to infectious

organisms.

>

[Guest guest]

>

> Yes, well good luck with that.

>

> First, I didn't say that " everyone has infections " . I believe,

with

> very good reason, that a very large number of pwc do have

> infections, but you don't have to believe it. I'm writing to those

> who think it's possible.

>

> Second, you're completley missing my point by saying you've gone

> the " standard testing " route.

>

> That IS the whole focus of my frustration. Standard testing is

> completely inadequate. Not only is the cause of our problems being

> missed due to the lack of simple lab tests, this negligence is

> contributing to a rapidly growing problem of untreatable chronic

> infections and disease.

>

> Example: A child has an ear infection. Goes to the doc. He looks

in

> her ear. Say's it's infected. But infected with what? Is the

> bacteria identified? No. Is it cultured? No. Tested for antibiotic

> sensitivities? No. Rather than doing a culture or simple gram

stain,

> identifying the bacteria and finding its sentivities to

antibiotics

> for proper treatment, the doctor simply guesses. Gives the child a

> few days worth of the latest antibiotic being pushed by the drug

> rep, and that's that. The kid gets better (or so it appears) and

no

> follow up testing is bothered with to make sure the bug is gone.

> Nothing. And ignorance is bliss. For a while. Repeat the identical

> scenario with the ENT/sinus infection or the Dentist/oral

> surgeon/dental infection.

>

> Do some research on bacterial resistance and you'll see why so

many

> people are chronically sick. I'm not talking about stealth

bacteria

> that we can't see. I'm talking about everyday, easy to identify

> ordinary strains that are almost impervious to everything. This is

> an inconceivably serious problem that the large health

organizations

> don't try to publicize, because medicine can't cope with the

problem

> they created.

>

> Profits are now driving and perpetuating the problem and it will

> continue to escalate until the public becomes informed and stands

up

> and starts demanding better care. The same kind of basic testing

and

> treatment that a dog can get at the vet, we should be able to get.

> The same tests that the old time docs used to do in their offices,

> but discontinued once corporate labs & insurance companies came

into

> the picture. If we could get this kind of preventative care from

our

> early days, we would have far fewer sick people today.

>

> Sadly, we, nor our children, can get this most basic of testing

and

> care until we're sick enough to be hospitalized. By then the

> infection has created so many toxins, and has caused so much

> inflammation that our organs or glands or tissue or bone has been

> damaged so severely, our gut dysbiosis so destroyed, our veins so

> scarred, our brains under so much pressure, hormones so out of

> balance, and perhaps even the inflammation has now become cancer

or

> serious heart disease, and we're so sick that we're more or less

> done for.

>

> But THAT's when we finally get recognized by the medical

> establishment. When it's too late.

>

> You can think I'm crazy, but there are thousands of research

> articles to support it, and NO ONE is paying any attention, least

of

> all our doctors.

>

> by the way, you don't have to tell me what everyone on this list

has

> done. I've been here for many years, have done almost all of it

> myself (including glutathione), and guess what, I mean no

disrespect

> but it's the same stuff just recycled, new versions of old

> supplements. It's like a soap opera. Tune in years later and you

> still know the story line.

>

> If you really want to know the monumental severity of the problem

> we're dealing with here, start punching into PubMed the

> words " bacteria " along with your choice of antibiotic resistance,

> inflammation, chronic osteomyelitis, chronic sinusitus. porphyria,

> dental, intracranial hypertension, biofilms, and any autoimmune

> disease you can think of. Pick any health topic, and add the word

> bacteria or infection and you'll be amazed at the reams of

> scientific research that links chronic illness to bacteria. What's

> most amazing of all, almost nobody who actually treats patients

> seems to be paying attention.

>

> It's this apathy that's allowing ignorant doctors to continue

making

> us sick, then refuse to treat the very problems they're creating.

>

> penny

>

> P.S. I truly want the medical landscape to change. And we have to

> start at the ground level, or everything else will be a waste.

> That's why I'm advocating for better testing. But another easy

thing

> we could all do is instruct our families to have autopsies

performed

> after our deaths. I think people will be appalled at the amount of

> internal damage, necrosis, etc. that is found due to infectious

> organisms.

Hi Penny

I share your frustration at the way the medical community treat us

(or don't with regard to testing). You mention you tried

glutathione would you mind letting us know how you tried to raise

this and did you have blood tests before and after your attempts at

raising it? Could it be that you didn't actually succeed in raising

it as per Rich's recent post regarding some of us not actually being

able to raise it orally by taking whey products due to a genetic

problem (at least from memory I believe that was what Rich was

saying).

Thanks

Pam

[Guest guest]

So very true Penny.

Take a look at the therapy for Lupus in 1975.

Here we are in 2005 - 30 years later and nothing has changed.

People talk about samento and other herbs - and that was in use in

the mid 70's

as is just about everything else I read about on these lists -

the difference is the information just wasn't as easily obtained as

now (internet) - and you couldn't talk to a multitude of people with

problems similar to yours.

If what ails you isn't a big named disease (or you live in a 3rd

world country) - then you're not profitable as a patient - you'll

mostly be frustrated and your Doc may be frustrated with you - but

you'll be the one left twisting in the wind.

Jaded as ever,

Barb

Penny wrote in part:

" by the way, you don't have to tell me what everyone on this list has

done. I've been here for many years, have done almost all of it

myself (including glutathione), and guess what, I mean no disrespect

but it's the same stuff just recycled, new versions of old

supplements. It's like a soap opera. Tune in years later and you

still know the story line. "

>

>

> > ***Hi Penny - Not all of us have " bacterial " infections which I

> get the impression you believe we ALL have. Every person on this

> list has gone the traditional route of seeing their family doctor

> and going through the standard medical tests. It has gotten us

> nowhere so we are on our own trying to find answers.

> > >

> > Of all the tests I have had done over the past 15 years,

> glutathione has been the only thing that has come up low.

Everything

> else has been normal. Therefore, I feel it is in my best interest

to

> follow the glutathione theory. I certainly do not feel that I am

> wasting my time, in fact I believe that this is absolutely the

best

> use of my time at present.

>

>

>

> Yes, well good luck with that.

>

> First, I didn't say that " everyone has infections " . I believe, with

> very good reason, that a very large number of pwc do have

> infections, but you don't have to believe it. I'm writing to those

> who think it's possible.

>

> Second, you're completley missing my point by saying you've gone

> the " standard testing " route.

>

> That IS the whole focus of my frustration. Standard testing is

> completely inadequate. Not only is the cause of our problems being

> missed due to the lack of simple lab tests, this negligence is

> contributing to a rapidly growing problem of untreatable chronic

> infections and disease.

>

> Example: A child has an ear infection. Goes to the doc. He looks in

> her ear. Say's it's infected. But infected with what? Is the

> bacteria identified? No. Is it cultured? No. Tested for antibiotic

> sensitivities? No. Rather than doing a culture or simple gram

stain,

> identifying the bacteria and finding its sentivities to antibiotics

> for proper treatment, the doctor simply guesses. Gives the child a

> few days worth of the latest antibiotic being pushed by the drug

> rep, and that's that. The kid gets better (or so it appears) and no

> follow up testing is bothered with to make sure the bug is gone.

> Nothing. And ignorance is bliss. For a while. Repeat the identical

> scenario with the ENT/sinus infection or the Dentist/oral

> surgeon/dental infection.

>

> Do some research on bacterial resistance and you'll see why so many

> people are chronically sick. I'm not talking about stealth bacteria

> that we can't see. I'm talking about everyday, easy to identify

> ordinary strains that are almost impervious to everything. This is

> an inconceivably serious problem that the large health

organizations

> don't try to publicize, because medicine can't cope with the

problem

> they created.

>

> Profits are now driving and perpetuating the problem and it will

> continue to escalate until the public becomes informed and stands

up

> and starts demanding better care. The same kind of basic testing

and

> treatment that a dog can get at the vet, we should be able to get.

> The same tests that the old time docs used to do in their offices,

> but discontinued once corporate labs & insurance companies came

into

> the picture. If we could get this kind of preventative care from

our

> early days, we would have far fewer sick people today.

>

> Sadly, we, nor our children, can get this most basic of testing and

> care until we're sick enough to be hospitalized. By then the

> infection has created so many toxins, and has caused so much

> inflammation that our organs or glands or tissue or bone has been

> damaged so severely, our gut dysbiosis so destroyed, our veins so

> scarred, our brains under so much pressure, hormones so out of

> balance, and perhaps even the inflammation has now become cancer or

> serious heart disease, and we're so sick that we're more or less

> done for.

>

> But THAT's when we finally get recognized by the medical

> establishment. When it's too late.

>

> You can think I'm crazy, but there are thousands of research

> articles to support it, and NO ONE is paying any attention, least

of

> all our doctors.

>

> by the way, you don't have to tell me what everyone on this list

has

> done. I've been here for many years, have done almost all of it

> myself (including glutathione), and guess what, I mean no

disrespect

> but it's the same stuff just recycled, new versions of old

> supplements. It's like a soap opera. Tune in years later and you

> still know the story line.

>

> If you really want to know the monumental severity of the problem

> we're dealing with here, start punching into PubMed the

> words " bacteria " along with your choice of antibiotic resistance,

> inflammation, chronic osteomyelitis, chronic sinusitus. porphyria,

> dental, intracranial hypertension, biofilms, and any autoimmune

> disease you can think of. Pick any health topic, and add the word

> bacteria or infection and you'll be amazed at the reams of

> scientific research that links chronic illness to bacteria. What's

> most amazing of all, almost nobody who actually treats patients

> seems to be paying attention.

>

> It's this apathy that's allowing ignorant doctors to continue

making

> us sick, then refuse to treat the very problems they're creating.

>

> penny

>

> P.S. I truly want the medical landscape to change. And we have to

> start at the ground level, or everything else will be a waste.

> That's why I'm advocating for better testing. But another easy

thing

> we could all do is instruct our families to have autopsies

performed

> after our deaths. I think people will be appalled at the amount of

> internal damage, necrosis, etc. that is found due to infectious

> organisms.

>

>

> >

>

[Guest guest]

Re: your question: I did powders first to support glutathione

production, then took it i.v. which Rich has said is also not a good

delivery method. I get tested monthly, but no change was recorded

while doing the treatments. But the way I see it, I've been down

this road too many times. Lots of effort little result. These days,

I go for something I can tell is having a big effect. And then spend

my time trying to figure out how to outsmart the illness to maintain

the recovery. Which is really hard, especially when there are so few

doctors out there who know anything at all about infections. I'm

lucky to have a couple who know more than the average.

I do very much appreciate Rich's research, but I do not believe a

deficiency is the primary reason so many people are so sick. There

are many deficiencies and genetic factors and immune system

processes that could be advocated just as passionately, but they

don't have an articulate and determined champion so they don't rise

to prominence. Glutathione is the big buzz word today that enters

every discussion, just as buzz words of the past have. But I've yet

to see any real recovery going on. Go to immunesupport.com. Read all

the breakthroughs of the past that have come and gone, some of which

have also been passionately promoted and our community has been

swept up by, sometimes for years, just to be dropped for the next

new thing when nothing really changed. Of course all of these

breakthroughs have contributed to our understanding, and that's

powerful and important, but it's the symptoms and the byproducts

that our energies are being focusing on, not the source.

My sincere belief and experience are that if you don't treat the

underlying infections (which are very difficult to treat once

they're entrenched and chronic) it doesn't matter how much tweaking

is done elsewhere in the body, it will only be of marginal help. We

need to start discussing the issue of infection in great depth, so

that we can learn how to overcome the obstacles that are impeding

effective treatment.

The most frustrating thing of all is that people don't even bother

looking at the problem. I would love to see good open debate on the

topic, but nobody's informed enough to even enter the discussion.

The objections are so off target, it's hard and exhausting to know

how to even start the debate.

I'll try to post some articles here some times just to keep the

topic alive, and then if anyone wants to enter the debate, I suggest

you join us at infection & inflammation 2 so that we don't annoy the

people here who are more interested in other things.

One thing I know is that if we continue to blindly follow the

circuitous path we've been on, while ignoring the mountain we're

circling, we're never going to get anywhere.

penny

>

> I share your frustration at the way the medical community treat us

> (or don't with regard to testing). You mention you tried

> glutathione would you mind letting us know how you tried to raise

> this and did you have blood tests before and after your attempts

at raising it?

[Guest guest]

>

> Bernie,

> I think virtually all of us do have several infections CAUSING these

> diseases.

***Hi a - I belong to the camp of people that believe that what I

have is a " viral " infection, rather than a bacterial one. I had a cold

for six months prior to suddenly coming down with CFS. I don't believe

that I have Lyme disease as my symtoms don't fit Lyme disease.

Take care.

Bernie

[Guest guest]

On May 18, 2006, at 1:35 PM, bernieanneca wrote:

>

>>

>> Bernie,

>> I think virtually all of us do have several infections CAUSING these

>> diseases.

>

>

> ***Hi a - I belong to the camp of people that believe that what I

> have is a " viral " infection, rather than a bacterial one. I had a cold

> for six months prior to suddenly coming down with CFS. I don't believe

> that I have Lyme disease as my symtoms don't fit Lyme disease.

My view is more inclusive than either of the ones above (and allows

that both may be right).

Historically, CFS/ME has been attributed to dozens of different kinds

of infections -- retrovirii (the HTLV family), enterovirii (like

polio -- CFS is a lot like post-polio syndrome), herpes virii (HHV-6,

EBV), bacterial infections (chlamydia, mycoplasma, etc.), mold and

fungi (in a variety of forms), and spirochete-based infections like

Lyme and babesia.

There are people on this list with every possible variant and

combination of these: it seems likely that they ALL are probable

culprits. Ultimately, this rogue's gallery of infections have brought

us all to more or less the same rather incapacitated place. To me,

this suggests a model in which one or more of these initial causes

forces the immune system to up-regulate. While the various infections

themselves are different, the cumulative and cascading effect of this

up-regulation ends up looking pretty much the same no matter what

started it. Those similarities are the symptom set we now call CFS/

ME; the various original infections that brought us here create the

various subsets of the disease.

My observation has been that this illness needs to be addressed on

three separate levels. All are equally important, and none should be

pursued at the expense of the others.

The first, of course, is the hunt for the underlying infection, in

the hopes that once it's identified, it can be treated. It should be

remembered all the while that not all of them can be identified; and

if identified, not all of them can be treated (particularly if our

immune systems respond to the various infections in this particular

way because of some genetic problem, which is the current theory).

It's also important to remember that just finding one causal

infection may not be the whole answer. There may well be more than

one infection going, especially for those of us who've been sick for

a long time. In any event, finding even the first one can take a

while -- hell, even finding a doctor who is willing to pursue it with

you can take years! -- so, while working this level is what brings us

to the Holy Grail of a full cure, it can't be the only means of

attack. We need to be realistic about this: many of us will spend our

lives looking for this answer, and still go to our graves without

one. Or, we may find our answers, only to discover that there's

nothing that can be done.

That's why we devote attention to the second level, which is figuring

out how to get yourself something like a life while you're working on

the first level. This is where immune support strategies like

glutathione, B12, methylation correction, and so on can be of

tremendous help. At their very best, these strategies may actually

empower and balance the immune system to the point where it can

effectively eliminate the underlying infection, whatever it may be.

But, even if that doesn't happen, they can reduce the amount of

systemic inflammation, toxicity, and aggravation (allergies, brain

fog, joint pain, sleep problems, etc. etc. etc.) to the point where

you can make significant strides toward getting your life back.

I've been sick for over 20 years. When it comes to Level One...well,

I know there's an underlying infection in there somewhere -- and I'm

looking for it -- but it's nowhere in sight at present. So all the

gains I've made -- and I've gone from 30% functioning to about 85%

over the past eight years -- have been in the Level Two domain. It's

not an ultimate answer, but I'll take every minute of improvement

it's given me.

The third level is maintenance. Over time, this damned disease takes

a permanent toll on the organs -- hypothalamus, pituitary, adrenals,

thyroid, heart, brain, liver. The longer it goes, the more damage you

sustain, and the lower the odds that it can ever be completely

repaired. So, until the day the underlying issue is found and

resolved, there need to be steps taken to compensate for this damage

(usually in the form of thyroid, adrenal, reproductive hormone, and

other medications that take over the work of malfunctioning organs),

and do what can be done to limit future damage (usually in the form

of supplements that support vulnerable organs, eliminate toxin

buildup, and reduce oxidative stress). Again, gluthathione is very

useful here in forestalling organ failure.

To recap: All of this is important and valuable. We often hear from

people on this list who insist that Level One is the only level worth

pursuing. If I'd listened to those people, I'd still be spending five

days a week in bed, no better off now than I was in 1996. The truth

is that, for many of us, finding the originating cause will be the

work of years. There is nothing wrong (and everything right!) with

doing whatever needs to be done in the meantime to keep oneself

functioning, and improve quality of life to the point where it's

still worth living even if the answers are never found.

Sara

[Guest guest]

Thanks Sara, I guess you could say that you've been really successful at

putting your theory in to practice. Well done!! And thanks for the

encouragement.

> My view is more inclusive than either of the ones above (and allows

> that both may be right).

>

> Historically, CFS/ME has been attributed to dozens of different kinds

> of infections -- retrovirii (the HTLV family), enterovirii (like

> polio -- CFS is a lot like post-polio syndrome), herpes virii (HHV-6,

> EBV), bacterial infections (chlamydia, mycoplasma, etc.), mold and

> fungi (in a variety of forms), and spirochete-based infections like

> Lyme and babesia.

>

> There are people on this list with every possible variant and

> combination of these: it seems likely that they ALL are probable

> culprits. Ultimately, this rogue's gallery of infections have brought

> us all to more or less the same rather incapacitated place. To me,

> this suggests a model in which one or more of these initial causes

> forces the immune system to up-regulate. While the various infections

> themselves are different, the cumulative and cascading effect of this

> up-regulation ends up looking pretty much the same no matter what

> started it. Those similarities are the symptom set we now call CFS/

> ME; the various original infections that brought us here create the

> various subsets of the disease.

>

> My observation has been that this illness needs to be addressed on

> three separate levels. All are equally important, and none should be

> pursued at the expense of the others.

>

> The first, of course, is the hunt for the underlying infection, in

> the hopes that once it's identified, it can be treated. It should be

> remembered all the while that not all of them can be identified; and

> if identified, not all of them can be treated (particularly if our

> immune systems respond to the various infections in this particular

> way because of some genetic problem, which is the current theory).

>

> It's also important to remember that just finding one causal

> infection may not be the whole answer. There may well be more than

> one infection going, especially for those of us who've been sick for

> a long time. In any event, finding even the first one can take a

> while -- hell, even finding a doctor who is willing to pursue it with

> you can take years! -- so, while working this level is what brings us

> to the Holy Grail of a full cure, it can't be the only means of

> attack. We need to be realistic about this: many of us will spend our

> lives looking for this answer, and still go to our graves without

> one. Or, we may find our answers, only to discover that there's

> nothing that can be done.

>

> That's why we devote attention to the second level, which is figuring

> out how to get yourself something like a life while you're working on

> the first level. This is where immune support strategies like

> glutathione, B12, methylation correction, and so on can be of

> tremendous help. At their very best, these strategies may actually

> empower and balance the immune system to the point where it can

> effectively eliminate the underlying infection, whatever it may be.

> But, even if that doesn't happen, they can reduce the amount of

> systemic inflammation, toxicity, and aggravation (allergies, brain

> fog, joint pain, sleep problems, etc. etc. etc.) to the point where

> you can make significant strides toward getting your life back.

>

> I've been sick for over 20 years. When it comes to Level One...well,

> I know there's an underlying infection in there somewhere -- and I'm

> looking for it -- but it's nowhere in sight at present. So all the

> gains I've made -- and I've gone from 30% functioning to about 85%

> over the past eight years -- have been in the Level Two domain. It's

> not an ultimate answer, but I'll take every minute of improvement

> it's given me.

>

> The third level is maintenance. Over time, this damned disease takes

> a permanent toll on the organs -- hypothalamus, pituitary, adrenals,

> thyroid, heart, brain, liver. The longer it goes, the more damage you

> sustain, and the lower the odds that it can ever be completely

> repaired. So, until the day the underlying issue is found and

> resolved, there need to be steps taken to compensate for this damage

> (usually in the form of thyroid, adrenal, reproductive hormone, and

> other medications that take over the work of malfunctioning organs),

> and do what can be done to limit future damage (usually in the form

> of supplements that support vulnerable organs, eliminate toxin

> buildup, and reduce oxidative stress). Again, gluthathione is very

> useful here in forestalling organ failure.

>

> To recap: All of this is important and valuable. We often hear from

> people on this list who insist that Level One is the only level worth

> pursuing. If I'd listened to those people, I'd still be spending five

> days a week in bed, no better off now than I was in 1996. The truth

> is that, for many of us, finding the originating cause will be the

> work of years. There is nothing wrong (and everything right!) with

> doing whatever needs to be done in the meantime to keep oneself

> functioning, and improve quality of life to the point where it's

> still worth living even if the answers are never found.

>

> Sara

>