Re: Re: Mercury chelation,amalgam removal...experts disagree?..help

[Guest guest]

Tim,

The dentist Cheney went to did take precautions, but he used a high speed

drill, which creates a lot of mercury vapor, especially when drilling away

for a long time on deep and hard to remove fillings, so he took in a lot of

mercury vapor, the worst way to take it in.

Cheney is not mistaken in his statement that the body dumps a lot of mercury

by itself after removal of amalgams. Studies have been done, and there's

this weird curve that one can follow over time as the body dumps mercury at

least twice during the first year after amalgam removal. There has been a

lot of discussion about this on the amalgam list over the past few years,

but that information has been slow to disseminate out of the research lists.

Cheney's statement does not refer to a safe or unsafe removal, but rather to

a natural, post removal dump of mercury, and I believe, a lot of toxins that

are stored in the jaws and tubules of the teeth. You are correct that he's

not an expert on mercury toxicity, but is fast learning. He had to. His

statement is correct though about the mercury dump. That is why a lot of

docs and other healthcare practitioners that do chelation are now suggesting

that people wait at least several months after removal before starting to

chelate. This will give the body a chance to equilibrate after the removal,

and find some new resting point. Perhaps all of your prep work will avert

some or most of the negative effects of the post removal mercury dump. I

hope so, and in that we all will have learned something. I am a victim of

the immediate post removal chelation, and it took me from a disabled but

functional around the house PWC to a totally non-functional PWC. I didn't

know what you know when I took the plunge three years ago.

Donna in NC

Re: Mercury chelation,amalgam removal...experts

disagree?..help

>> Steve,

>

> I have no idea why he would not use to proper protocol to protect him

from Hg poisoning during removal. <snip> I do question his theory and

protocol for removal though. You stated he said " the body dumps mercury

collected over your lifetime into the bloodstream when you have the

amalgams removed and this can be more than a PWC can handle. " From most of

what I've read, if you find a knowlegeable and experienced dentist, you can

minimize the amount of mercury released into your body during removal. I

don't see the connection between having your amalgams removed properly and

the body dumping a lifetime of Hg into the bloodsteam. In other words, how

does your body know you've had your amalgams removed so now it's time for

the big dump? I know he's an expert on CFS, but not so sure about mercury

toxicity. I agree with prepping the body and reducing the load, but not

the other statement.

I've had half my amalgams replaced over the last few weeks and haven't

noticed any negative effects to date. Perhaps it's the prep work I did to

increase liver function, NDF drops, the post removal Vitamin C IV drips, my

dentist did a great job to minimize leakage, or it just hasn't hit yet.

Tim

[Guest guest]

I wish I had the references for this, but I have heard it repeated many places,

and it is just what happened to me. I was fine (even better than before) for

2-3 months after proper removal, and then got very sick. I believe that part

about the body dumping its reserves. But I don't have any good references as I

said. (Sorry to say, you may not have hit your bad spot yet... I hope this

isn't true for you... maybe the NDF will make a difference... but I don't think

a couple weeks is enough time to know. I did what you did, remove some, wait a

few weeks, no problems, remove some more. But this was irrelevant because the

problem happened months later.)

Unfortunately I agree with you though that I don't think Cheney has really

looked that much into the detox issues, because recommending whey and NAC

doesn't appear to always be the right thing. Specifically there are many people

with mercury toxicity that have high cysteine levels, like I did. And although

whey and NAC improve the glutathione, they also raise the cysteine which is

toxic in itself. I read a theory (unpublished) that in people with high

cysteine the mercury is routed to the brain. I believe that, because that is

exactly what happened to me at 3 months post-removal.

Doris

Steve,

I have no idea why he would not use to proper protocol to protect him

from Hg poisoning during removal. If he didn't require a rubber dam,

oxygen, and post removal Vitamin C IV, that just seems absurd to me!

His life though. I do question his theory and protocol for removal

though. You stated he said " the body dumps mercury collected over

your lifetime into the bloodstream when you have the amalgams removed

and this can be more than a PWC can handle. " From most of what I've

read, if you find a knowlegeable and experienced dentist, you can

minimize the amount of mercury released into your body during

removal. I don't see the connection between having your amalgams

removed properly and the body dumping a lifetime of Hg into the

bloodsteam. In other words, how does your body know you've had your

amalgams removed so now it's time for the big dump? I know he's an

expert on CFS, but not so sure about mercury toxicity. I agree with

prepping the body and reducing the load, but not the other statement.

I've had half my amalgams replaced over the last few weeks and

haven't noticed any negative effects to date. Perhaps it's the prep

work I did to increase liver function, NDF drops, the post removal

Vitamin C IV drips, my dentist did a great job to minimize leakage,

or it just hasn't hit yet.

Regards,

Tim

[Guest guest]

>From: " Doris Brown " <dorisbrown9@...>

>Reply-

>< >

>Subject: Re: Re: Mercury chelation,amalgam

>removal...experts disagree?..help

>Date: Sat, 8 Dec 2001 00:51:49 -0800

I have no idea about his protocol but I had my amalgams removed (and I had

alot of them!) 7 or 8 years ago - no dam, no prepping, no precautions that I

can remember and didn't have any negative or positive experiences afterwards

BUT Cheney said I had the biggest mercury ring in my eye that hes ever seen.

I now suffer from terrible MCS and its getting worse all the time. Was it

from the amaglam removal? I really wouldn't think so, my MCS didn't appear

for several years after that but who knows. Maybe mercury toxicity is one

of the reasons I cannot tolerate treatments??? I don't know but I would be

careful with amalgam removal. Some people, of course, feel better right

away. If Cheney's heart problem was due amalgam removal without

protection, then it obviously was a mistake. You'd think, just to be safe,

you'd want all the protection you could get, but I guess he felt secure in

his thinking.

>

>I wish I had the references for this, but I have heard it repeated many

>places, and it is just what happened to me. I was fine (even better than

>before) for 2-3 months after proper removal, and then got very sick. I

>believe that part about the body dumping its reserves. But I don't have

>any good references as I said. (Sorry to say, you may not have hit your

>bad spot yet... I hope this isn't true for you... maybe the NDF will make a

>difference... but I don't think a couple weeks is enough time to know. I

>did what you did, remove some, wait a few weeks, no problems, remove some

>more. But this was irrelevant because the problem happened months later.)

>

>Unfortunately I agree with you though that I don't think Cheney has really

>looked that much into the detox issues, because recommending whey and NAC

>doesn't appear to always be the right thing. Specifically there are many

>people with mercury toxicity that have high cysteine levels, like I did.

>And although whey and NAC improve the glutathione, they also raise the

>cysteine which is toxic in itself. I read a theory (unpublished) that in

>people with high cysteine the mercury is routed to the brain. I believe

>that, because that is exactly what happened to me at 3 months post-removal.

>

>Doris

> Steve,

>

> I have no idea why he would not use to proper protocol to protect him

> from Hg poisoning during removal. If he didn't require a rubber dam,

> oxygen, and post removal Vitamin C IV, that just seems absurd to me!

> His life though. I do question his theory and protocol for removal

> though. You stated he said " the body dumps mercury collected over

> your lifetime into the bloodstream when you have the amalgams removed

> and this can be more than a PWC can handle. " From most of what I've

> read, if you find a knowlegeable and experienced dentist, you can

> minimize the amount of mercury released into your body during

> removal. I don't see the connection between having your amalgams

> removed properly and the body dumping a lifetime of Hg into the

> bloodsteam. In other words, how does your body know you've had your

> amalgams removed so now it's time for the big dump? I know he's an

> expert on CFS, but not so sure about mercury toxicity. I agree with

> prepping the body and reducing the load, but not the other statement.

>

> I've had half my amalgams replaced over the last few weeks and

> haven't noticed any negative effects to date. Perhaps it's the prep

> work I did to increase liver function, NDF drops, the post removal

> Vitamin C IV drips, my dentist did a great job to minimize leakage,

> or it just hasn't hit yet.

> Regards,

>

> Tim

>

>

>

>

[Guest guest]

>From: " Doris Brown " <dorisbrown9@...>

>Reply-

>< >

>Subject: Re: Re: Mercury chelation,amalgam

>removal...experts disagree?..help

>Date: Sat, 8 Dec 2001 00:51:49 -0800

I have no idea about his protocol but I had my amalgams removed (and I had

alot of them!) 7 or 8 years ago - no dam, no prepping, no precautions that I

can remember and didn't have any negative or positive experiences afterwards

BUT Cheney said I had the biggest mercury ring in my eye that hes ever seen.

I now suffer from terrible MCS and its getting worse all the time. Was it

from the amaglam removal? I really wouldn't think so, my MCS didn't appear

for several years after that but who knows. Maybe mercury toxicity is one

of the reasons I cannot tolerate treatments??? I don't know but I would be

careful with amalgam removal. Some people, of course, feel better right

away. If Cheney's heart problem was due amalgam removal without

protection, then it obviously was a mistake. You'd think, just to be safe,

you'd want all the protection you could get, but I guess he felt secure in

his thinking.

>

>I wish I had the references for this, but I have heard it repeated many

>places, and it is just what happened to me. I was fine (even better than

>before) for 2-3 months after proper removal, and then got very sick. I

>believe that part about the body dumping its reserves. But I don't have

>any good references as I said. (Sorry to say, you may not have hit your

>bad spot yet... I hope this isn't true for you... maybe the NDF will make a

>difference... but I don't think a couple weeks is enough time to know. I

>did what you did, remove some, wait a few weeks, no problems, remove some

>more. But this was irrelevant because the problem happened months later.)

>

>Unfortunately I agree with you though that I don't think Cheney has really

>looked that much into the detox issues, because recommending whey and NAC

>doesn't appear to always be the right thing. Specifically there are many

>people with mercury toxicity that have high cysteine levels, like I did.

>And although whey and NAC improve the glutathione, they also raise the

>cysteine which is toxic in itself. I read a theory (unpublished) that in

>people with high cysteine the mercury is routed to the brain. I believe

>that, because that is exactly what happened to me at 3 months post-removal.

>

>Doris

> Steve,

>

> I have no idea why he would not use to proper protocol to protect him

> from Hg poisoning during removal. If he didn't require a rubber dam,

> oxygen, and post removal Vitamin C IV, that just seems absurd to me!

> His life though. I do question his theory and protocol for removal

> though. You stated he said " the body dumps mercury collected over

> your lifetime into the bloodstream when you have the amalgams removed

> and this can be more than a PWC can handle. " From most of what I've

> read, if you find a knowlegeable and experienced dentist, you can

> minimize the amount of mercury released into your body during

> removal. I don't see the connection between having your amalgams

> removed properly and the body dumping a lifetime of Hg into the

> bloodsteam. In other words, how does your body know you've had your

> amalgams removed so now it's time for the big dump? I know he's an

> expert on CFS, but not so sure about mercury toxicity. I agree with

> prepping the body and reducing the load, but not the other statement.

>

> I've had half my amalgams replaced over the last few weeks and

> haven't noticed any negative effects to date. Perhaps it's the prep

> work I did to increase liver function, NDF drops, the post removal

> Vitamin C IV drips, my dentist did a great job to minimize leakage,

> or it just hasn't hit yet.

> Regards,

>

> Tim

>

>

>

>

[Guest guest]

Please let me clarify a couple of things here before this rumor mill gets

any bigger 1)Cheney does not recommend NAC. In fact when I told him my EI

doc suggested NAC, he nearly fell out of his chair. He said that it is

dangerous for PWC's, especially in the doses generally recommended. (500 mg

TID). Then he proceeded to tell me about three PWC suicides that came about

because these people were taking this dosage of NAC. 2) Cheney does a liver

detox test, and organic acids test, and various other tests to determine if

one has high cysteine levels before making any recommendations - that is if

one has the $$$ and is willing to do the testing. Yes he generally

recommends whey protein, but not if he knows you have cysteine problems.

This is one of the problems with people taking a doctor's general protocol,

and assuming it is the same for everyone. It isn't. He suggests Metal-Free

for some of his patients, but has never even suggested it for me. He knows

that I am too weak to withstand a rapid movement of mercury through my body.

He does recommend whey protein as a first choice, as it helps build

glutathione, something nearly all of us are deficient in, and because we

need the protein, as we tend to be catabolic in nature as a result of this

disease. Though I can't take whey, probably due to my allergy problem with

dairy, as my cysteine levels are not high, we have tried several alternative

protein sources until we hit on one I could handle, called Ultimate Meal.

However, as Ultimate Meal does not provide glutathione, I take glutathione

injections. Not all of his patients do. However, folks are now seeming to

think that glutathione shots are part of his general program. They only are

if other things don't work. We are so reliant upon the great Cheney, we seem

to have developed this need to do everything he suggests, often without

knowing what tests he performs prior to a certain suggestion, and then we

take these things as part of the general program. Perhaps we Cheney patients

should be more specific about the whys that we are doing something when we

state that we are doing something, so that the rest of the people here that

are wanting to follow Cheney protocol, will understand why the man is doing

what he is doing. We are individuals. I come to Cheney not only with CFIDS,

but with pesticide poisoning, mold toxicity, mercury toxicity, porphyria,

asthma since infancy with a multitude of allergies that without allergy

injections I would be fed through a tube, severe and crippling MCS making me

almost exclusively homebound, and having to make serious choices about going

out as I know there will be hell to pay the next day just due to the MCS,

not even CFIDS problems related to going out. I can't expect the man to fix

all my problems, or to know what low dose pesticides over a lengthy period

of time do to a body, especially when the toxicologist who sees me for this

states that there have been NO studies done in this area. (His final notes

on the matter are summed up in one sentence : patient needs supportive care

only.) This year the pesticide that did me in was finally banned for use in

this country, of course, not until the current supply runs out, much like

mercury in vaccinations. It too is outlawed, but not before the available

supply runs out. I could go on and on here folks, but if you are not a

Cheney patient, and are trying to follow his protocol, at least ask what

tests he does to determine you are ok to use something, or perhaps another

MD did the tests and we brought the results to him to see where we have been

and what's been done prior to seeing him , or making sure we keep him

current with test results our other docs have done, but don't go ascribing

things to him, or any other doctor for that matter, without the full story.

Also, some people take things on their own, and acknowledge on list that

they are doing so on their own, or without Cheney's knowledge (and some who

are Cheney patients are very good about ascribing what they are taking to

another doc, to Cheney, to their own intuition.....), but if we don't

acknowledge the full story behind why we do what we do, i'm afraid a whole

snowball of bad info is going to go around and around, especially in areas

like mercury removal/chelation where no two authorities in the world can

agree on proper protocol on removal or chelation. Doris, Cheney's specialty

is not detox, but he is learning. How much can you expect one person to

know? Most of the world, especially the AMA and ADA, and their counterparts

in other countries, but none as bad as here except perhaps the UK, does not

believe in mercury toxicity. It is a whole new field. See someone who

specializes in mercury detox and pray for the best.

Also, one of the reasons I stated we should not be delving into Cheney's

personal history until he makes his story public, is to prevent the very

thing that happened last night. Steve B. stated that Cheney used no

precautions, that he felt he didn't need to leading to posts about how

stupid that he was to do that. He told me he did look into precautions, and

the dentist he saw used everyone except the precaution he forgot to ask

about, namely, a high vs. low speed drill. So two people with two different

stories. Or two different interpretations of the story. Who's correct, then

you say? Perhaps we both are. Perhaps the story is told differently to

someone who has had their amalgams removed three years prior, than to

someone who is debating having them removed, to serve a particular purpose.

But two different stories have set off a chain reaction saying that was

stupid, he was absurd, how can we trust him.....we weren't there folks. We

DON'T know what went on, and we need to stay out of it until he speaks

publicly, then we can make all the comments we wish.

We tread dangerous grounds when we try a doctor's protocol, any of them,

without understanding why he/she does what they do, what tests were done

before hand, why a treatment was suggested, and then it fails on us. We

blame the doctor, not our own poor research, and not the fact that that

particular is not our doctor with information about our entire medical

histories, especially for those of us who have been ill for a long time and

have medical records as big as the great outdoors.

Donna in NC

PS - While I think it's great that we are finally getting interested in

mercury and it's relevance to our condition, most of us have removed our

mercury amalgams in hopes of seeing big changes. I think removing our

amalgams helps our condition by relieving a big source of toxins that our

bodies must deal with, but it is more the damage that has been done by the

mercury for all these years that it has been sitting in our systems, and

wreaking havoc on our enzyme systems, thus our thyroid problems, or

additional brain fog above and beyond the CFIDS brain fog...and it might be

for many of us that mercury toxicity was a big factor in bringing it on, but

removing it is only a small part of the after picture. Restoring the harm

done, is probably bigger. And there are the other mouth issues - periodontal

disease, toxic root canals in dead teeth feeding on anaerobic bacteria that

are resistant to antibiotics, cavitations, osteonecrosis and bone breakdown

debris, more breeding grounds for anaerobic bacteria....it doesn't end with

amalgam removal and chelation. This is a BIG issue, very widespread, and one

that is unsupported by the AMA or ADA, so good luck. (Sorry about the

politics, Ken, but this is a hot issue, one I have spent too much of my time

and energy studying, and they go hand in hand)

Donna in NC

Sorry if I have offended anyone, it was not my intention, but I got the

feeling this thread was getting out of hand or at least, going in the wrong

direction, and not doing us good or serving good purpose

Re: Re: Mercury chelation,amalgam

removal...experts disagree?..help

> Unfortunately I agree with you though that I don't think Cheney has really

looked that much into the detox issues, because recommending whey and NAC

doesn't appear to always be the right thing. Specifically there are many

people with mercury toxicity that have high cysteine levels, like I did.

And although whey and NAC improve the glutathione, they also raise the

cysteine which is toxic in itself. I read a theory (unpublished) that in

people with high cysteine the mercury is routed to the brain. I believe

that, because that is exactly what happened to me at 3 months post-removal.

>

> Doris

[Guest guest]

Thanks for the clarification. That was a very interesting post.

I think the truly sad part is that so many people are hanging on Cheney's every

word (and words that are attributed to him even if he doesn't say them) because

there is nobody else doing the research and trying the things he is trying. I

wonder if he even realizes this. His life is his own and he has a right to do

what he wants with it, but it seems like he could help so many more people if he

would spend a day a month writing up treatments and reasons for them, as well as

the testing such as you described. Then other doctors would have a starting

point and be able to work from there.

It's not just Cheney. Berg (hypercoagulation treatment) was kind of the same.

He published some papers and at least did a few chats that helped understand his

treatment, but then dropped out of sight. Unless your doctor knows him and can

call him, they don't know how to interpret things that are happening. Well,

maybe Berg doesn't know either... after all he is really just a researcher that

found a way to " treat " a problem but since he isn't a doctor he doesn't follow

the patients through treatment to see all the twists and turns.

But anyway it is sad that there are people with so much information that can

change many lives, and our method of extracting and using that information is so

inefficient.

Doris

[Guest guest]

Tim,

I don't know exactly what procedures Cheney followed during his amalgam

removal but only know it was not as precautionary as that he recommends for

his patients. When amalgams are removed the body has a physiologic response

to this process in the form of dumping mercury that has collected in the

organs over many years. I don't know why the human body has this response.

When proper procedures are followed it's not mercury escaping from the

amalgams being removed that is the problem. Steve B.

>From: " just_tim_ca " <just_tim_ca@...>

>Reply-

>

>Subject: Re: Mercury chelation,amalgam

>removal...experts disagree?..help

>Date: Sat, 08 Dec 2001 04:58:59 -0000

>

>

> >

> > Jane,

> >

> > Cheney told me he did not have any special procedures done during

>his

> > amalgam removal. He didn't think the precautionary measures

>necessary for

> > his CFS patients applied to him or other healthy persons. His

>amalgam

> > removal resulted in idiopathic cardiomyopathy but from what I hear

>he has

> > largely recovered.

> >

> >Cheney thinks if you have very high

> > mercury levels, as I do, you should take chlorella, whey,

>glutathione, zinc,

> > and liquid selenium until your mercury levels decline to a

>reasonable level.

> > At that point, up to two years later, you then have the amalgams

>removed

> > because the body dumps mercury collected over your lifetime into

>the

> > bloodstream when you have the amalgams removed and this can be more

>than a

> > PWC can handle. Steve B.

>

>Steve,

>

>I have no idea why he would not use to proper protocol to protect him

>from Hg poisoning during removal. If he didn't require a rubber dam,

>oxygen, and post removal Vitamin C IV, that just seems absurd to me!

>His life though. I do question his theory and protocol for removal

>though. You stated he said " the body dumps mercury collected over

>your lifetime into the bloodstream when you have the amalgams removed

>and this can be more than a PWC can handle. " From most of what I've

>read, if you find a knowlegeable and experienced dentist, you can

>minimize the amount of mercury released into your body during

>removal. I don't see the connection between having your amalgams

>removed properly and the body dumping a lifetime of Hg into the

>bloodsteam. In other words, how does your body know you've had your

>amalgams removed so now it's time for the big dump? I know he's an

>expert on CFS, but not so sure about mercury toxicity. I agree with

>prepping the body and reducing the load, but not the other statement.

>

>I've had half my amalgams replaced over the last few weeks and

>haven't noticed any negative effects to date. Perhaps it's the prep

>work I did to increase liver function, NDF drops, the post removal

>Vitamin C IV drips, my dentist did a great job to minimize leakage,

>or it just hasn't hit yet.

>

>On a side note, I was diagnosed with Lyme, or as she termed it

>a " Lyme like illness " (politics) by a highly respected LLMD this past

>week. I'm starting Abx as soon as my mail pharmacy sends them to me.

>

>Regards,

>

>Tim

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

I don't think it's because of his recent lecture. I think it's because other

than Teitelbaum, whom I happen to not agree with (none of his stuff applies to

me at all), I have no idea what treatment plans the others recommend. Where

would one find this? There are places to go see what Cheney recommends at

least, even if you don't get the whole picture.

Doris

Re: Mercury chelation,amalgam removal...experts

disagree?..help

Actually there are others. Teitelbaum, Poesnecker, Bell, Salvato,

Klimas and others. I am not contridictin what you have said, only

saying that there are other smart docs interested in this DD. We

have just been on a Cheney discussion lately, largely due to his

recent lecture in DFW and the forthcoming tape.

Mike

[Guest guest]

Judith,

I agree with you that this situation we are in is abominable.

I believe that everybody connected with the CDC and CFIDS from the time of

the Lake Tahoe fiasco to the CDC purposeful misallocation of Congressional

funding for CFIDS research, to those perpetuating its screwup at this

present time, should be hung and quartered, (my husband suggests a military

court-martial), but I have no say in that matter, as apparently neither does

Congress!

I think Cheney is caught in a terrible Catch 22. While he does not edit, or

review what is posted on the web as his protocol, and he should not, or he

will be held liable for someone following it without proper testing, etc,

and end up sued in our litiginous society for damages and probably

malpractice. I'd be surprised if he hasn't been already, and the CPA in me

would seriously be advising him to do as the others - forbid his protocols

to be " put out there " . However, I think there is that person in Cheney that

knows he turns down desperate PWC's as there is only so much time in a day,

and as he is still recovering himself, i'm sure his hours are not as long as

they have been - however, I have been on the phone with him at 7 pm, and in

his office as late as nearly that on a few occasions. So for all of those

folks, I think he allows his protocols to be published, with the hopes that

the information could be taken to people's doctors and at least some of it

followed up upon. I don't think he intends for folks to " go it on their

own " , which unfortunately, is happening.

I don't know what's right or wrong in that regard. I'm just glad I'm not in

his shoes, or any other CFIDS doc that must make a decision about whether or

not to let their treatment info be publicized. I don't blame the docs, nor

do I blame us. I hang on these lists just as everyone else. We just don't

have the energy for much beyond these lists. I don't research like I used

to. None of us do.

Donna in NC

Re: Mercury chelation,amalgam removal...experts

disagree?..help

> Donna,

>

> Thanks for taking the time to describe well that Cheney does treat

patients not a disease abstracted from patients, as the protocol stuff

sometimes, as you observe, does lead to many of us believing that and

following it without HIS evaluating us.

>

> Part of this is because as you say stuff has been put out (is he

responsible to some extent--I wonder ?) that suggests " a " general basic

approach. And a big part is that so many of us are quite desperate for

clinical care and intelligence and some explanatory stuff related to

treatment approaches, which, say, Komaroff, as but one example, doesn't

give.

>

> It's a generally dreadful situation. We've appointed/annointed Cheney

because the damn doctor " community " and the public health sector has been

totally irresponsible in organizing research and centralizing already extant

research and ongoing research so that not just Cheney's ideas (and say maybe

Teitelbaum's) are out there.

>

> That is not our fault. We spend (have to spend) far too much time given

that we have far too little energy/time doing what they should be doing.

Without these lists we'd be dead in the water and it's because the medical

bigwigs have not been clinically responsible to us as a population.

>

> Judith Wisdom

>

[Guest guest]

on 12/11/01 1:57 am, Donna Pruitt at donnap@... wrote:

> However, I think there is that person in Cheney that

> knows he turns down desperate PWC's as there is only so much time in a day,

> and as he is still recovering himself, i'm sure his hours are not as long as

> they have been - however, I have been on the phone with him at 7 pm, and in

> his office as late as nearly that on a few occasions. So for all of those

> folks, I think he allows his protocols to be published, with the hopes that

> the information could be taken to people's doctors and at least some of it

> followed up upon. I don't think he intends for folks to " go it on their

> own " , which unfortunately, is happening.

Hey now! 8^D C'mon what's this about it being so unfortunate that some

folks are choosing to " go-it on their own " ? I mean: Okay sure, talking of

averages- the average person should probably not be trying to heal themself

by following an internet-posted protocol which reflects the clinical

observations of one doctor and his knowledge. But that doesn't mean that

they shouldn't try.

But really, the people who follow this list are ON AVERAGE i think much more

competent than the average person regarding making sound informed treatment

decisions. There is a lot of collective wisdom and even experience which

can be gleaned from the diverse minds on lists like this one. So I do not

think it is inappropriate for the willing, prudent patient to claim his/her

" therapeutic autonomy, " which is highly valued in our society.

There really is no need to " go it on your own " when you've got access to

good info on the internet and a local support network of medical personnel,

should their services be required to forward you on your journey towards

health. okay enuf of my soapbox gestures!

>

> I don't know what's right or wrong in that regard. I'm just glad I'm not in

> his shoes, or any other CFIDS doc that must make a decision about whether or

> not to let their treatment info be publicized. I don't blame the docs, nor

> do I blame us. I hang on these lists just as everyone else. We just don't

> have the energy for much beyond these lists. I don't research like I used

> to. None of us do.

I dunno. I think I do. Not always but when I do, I do. I've never had

such a need to research before in my life. But also I through periods where

these very lists are taking WAY too much time and effort--to the exclusion

of simple ways I can improve my health: e.g., I realize I'm spending hours

per night reading up on the neurobiology of pain and its control b/c I wish

to find a solution to my own pain problems. However I often do so to the

exclusion of commmon sense behaviours like taking time out from the computer

for a walk or a rest or a new approach...

Long live the free flow of information on Cheney! For those of us in canada

and without the chance to see cheney, the freeflow of info based on patient

visits is unparalleled in its usefulness. Were it not for this freeflow I

would not be currently enjoying my GH-related improvements in health. I had

no ITT; no bicycle test to objectively determine GH deficiency. Instead,

based on my reported symptoms and his observed signs, my endocrinologist

suggested I give gH a trial run. He knew CFS patients were shown to be

deficient in a recent paper. He said based on his experience using it at

weight loss clinics, there would be little harm in giving it a try.

Conversely, if I am deficient then there may be harm in not giving it a try.

So I'll stop now b/c my butt hurts!

--

Hud (8 >{D)