Re: Exciting news! Cohort trying the simplified GD-MCB treatment growing fast

[Guest guest]

As Yogi Berra once said, "It's deja vu all over again". Are we pwcs trapped in a "Back to the Future" movie or something? Supplements...heavy metal detoxing? How long have we been fiddling around with this stuff? Maybe I've been living in another dimension but in my world this has been going on for well over 10 years. It's where I started, please don't tell me I'm going to die with that being the biggest breakthrough we're going to get. I understand the continued attraction to this approach. It's because there is so little in the way of mainstream medical support. But I'll tell you something about doing supplement and detox protocols alone. My doc has tried every alternative protocol, no matter how whacky, if there's the slightest evidence that it might work.

He travels the globe investigating protocols & researching supplements. He has invested thousands in alternative medical devices and has an i.v. clinic in his office. Since he's so sincere and researches these things so thoroughly, I've tried most of them including detoxes and supplements out the wazoo. Sometimes they help, but the sad truth is, nobody gets cured by them. Sure some people see improvements from various things, but if a supplementation or detox protocol were the answer, my doc's patients would all be cured because nobody offers as much as he does. Quite frankly, he's as frustrated with the lack of general progress as I am . Fortunately for me, he at least believes after all these years of seeing patients and how they respond, that it's chronic infections we're dealing with, and he keeps looking for any possible means to eradicate

the infections while boosting our immune systems and detoxing our bodies at the same time. But immune boosting and detoxing are just helpful aids in the fight, not the cure. (and thankfully, my doctor also knows that detoxing needs to include microbial toxins as well as metals, probably more so). I seriously hope our community is not taking a huge step backwards here, getting all excited once again about yet another supplement/detox program. I mean, I'd be happier than anybody if it works, but also more surprised. :-( penny p.s. If I believe in any protocols having a chance, it would be Barb's and Tony's. Even & 's anti-fungal protocols are way more on target. But Barb put just as much research into her approach as any researcher. And Tony took a really aggressive

approach to his illness and in the end, both of them triumphed and got their lives back in the fullest sense. They did what was needed to overcome their infections, using various means suited to their individual bugs and situations. Tony tries to share what worked for him but few want to listen. Barb doesn't push her protocol all over the net, but if people would pay attention and learn from what these guys did (including their supplement and detox efforts), they might actually see some real results. And if people like Rich would just research the organisms themselves a bit, and display some kind of knowledge about how tough they are, I'd be more inclined to get excited about some of his methods. But unfortunately, no matter how well intentioned, most of these guys show no interest in the bugs' strengths. Only in the hosts' weaknesses. And as

far as I'm concerned, their efforts are going to fall short as long as they maintain this short sightedness. Kate <KateDunlay@...> wrote: Tony, I think Rich was referring to the tests which show evidence of detox (you did ask for that evidence, right?). The people who can afford the whole Yasko protocol do periodic urine tests and they graph the amounts of various metals that are measured in the urine. Some people do a reference test before they begin

so that they are sure they are excreting more metals while on the protocol.- KateOn May 31, 2007, at 5:40 AM, dumbaussie2000 wrote:> Rich> Excuse me if i'm ignorant or what but the type of blood tests I'm> discussing are at the peanuts end of the spectrum- your genetic and> PAula's Igenex testing is 100 times more expensive than a full blood> count.>> > >> > Hi, Tony.> >> > I certainly agree that it is desirable to get some concrete before> > and after lab data on people trying this treatment. However, the> > participation of these people is totally voluntary. They are real> > people with real bank accounts (or lack of them) who have to ask> real>

> doctors for lab tests and figure out how to pay for them.

[Guest guest]

Hi ,

For some reason your messages keep ending up in the pending spam

folder, which I'm not in the habit of checking very often (I'll be

notified from now on as I changed my settings today). I don't know

why this is happening as you're obviously a member of the group. Are

you sure your email address is listed under your

membership? You might want to check that.

penny

> > Hi, all.

> >

> > I realise that not everyone here is ecstatic about my approach

to

> > treating CFS, but I like you nevertheless, and I don't want

anyone

> to

> > be left out. So here's the big news:

> >

> > As of this afternoon, the number of PWCs who have notified me

that

> > they are trying the new simplified treatment approach based on

the

> > glutathione depletion--methylation cycle block hypothesis for

CFS

> has

> > reached twenty-four, and several more have informed me that

they

> are

> > planning to start at various times in the future.

> >

> > This has developed from a standing start in late January, 2007.

> Most

> > of these people

> > have been on it for only a few weeks or a few days, the longest

> being

> > a little over three months now. Because the pioneers on this

> > treatment have been posting such good early reports on CFS

internet

> > boards (especially the ImmuneSupport FM/CFS board), there

appears

> to

> > be an avalanche effect going on in terms of new people starting

it

> > over

> > the past few days. I find it quite exciting!

> >

> > One of the first things several have noticed is better sleep.

There

> > are also reports of memory returning, less pain, more energy,

brain

> > fog lifting, improved thyroid function, vulvodynia going away,

and

> > more. I think we are finally hitting the root cause in the

> > biochemistry for many PWCs.

> >

> > I don't yet know whether this treatment will work for " pure

> > fibromyalgia. " I haven't been pushing it for that, because I

don't

> > know how FM develops at the biochemical level. I do think I

> > understand how many cases of CFS develop now, though, and I

believe

> > that the science is in place to support this treatment for CFS.

I

> > presented

> > it in a poster paper at the IACFS conference in January.

> >

> > As many of you may know, I've been trying to figure out CFS for

> over

> > ten

> > years. Thanks to the work of others, including Dr. Cheney and

the

> > autism people, I think we are finally there, at least for a

major

> > subset, and perhaps for the majority of cases.

> >

> > Is there a downside to this treatment? Yes, it doesn't bring a

cure

> > overnight, and there is unavoidable detox to go through,

because

> the

> > body accumulates toxins and infections while a person has CFS.

> Their

> > detox system and their immune system are not operating properly

> > during

> > this time. And the rates of excretion of toxins from the body

are

> > limited. So

> > the more that has accumulated, the longer it will likely take

to

> work

> > off the backlog and clear it all out, so that the person can be

> > healthy again. But I'm convinced that it will happen, if the

person

> > hangs in there with the treatment.

> >

> > So far very few who have started this treatment have quit.

Several

> > find that they need to take breaks to let the detox settle down

to

> a

> > tolerable level, but because they begin experiencing

improvement in

> > CFS

> > symptoms almost immediately, they are motivated to continue.

> >

> > For those interested in the details of this treatment and its

> > history, here's a reprint of something I posted on the

> ImmuneSupport

> > board:

> >

> > Simplified Treatment Approach--Current Version 05/22/07 09:58

AM

> >

> > Here is the current version of the simplified treatment

approach

> > based on the glutathione depletion--methylation cycle block

> > hypothesis.

> >

> > All the supplements can be obtained from

> http://www.holisticheal.com,

> > or you can obtain them elsewhere. The cost is a little over

$2.00

> > per day for all the supplements at the dosages suggested below.

> >

> > These supplements and dosages have been selected by Dr. Amy

Yasko

> as

> > part of her complete treatment approach, as described in her

> > book " The Puzzle of Autism. " Substitutions or changes in

dosages

> may

> > not have the same effect as the combination of supplements and

> > dosages suggested. It's not wise to raise the dosages, at least

for

> > a few weeks, because this can bring on detox at an intensity

that

> is

> > difficult to tolerate. Please be patient and take it easy!

> >

> > Here are the five supplements:

> >

> > 1. one-quarter tablet (200 micrograms) Folapro (Metagenics)

> >

> > 2. one-quarter tablet Intrinsic B12/folate (Metagenics)

> >

> > 3. (up to) 2 tablets (It's best to start with ¼ tablet and work

up

> as

> > tolerated) Complete Vitamin and Neurological Health Formula

> (Holistic

> > Health Consultants)

> >

> > 4. one softgel capsule Phosphatidyl Serine Complex

> >

> > 5. one sublingual lozenge Perque B12

> >

> > The first two supplement tablets can be difficult to break into

> > quarters. An alternative is to crush them into powders, mix the

> > powders together, and divide the powders into quarters using a

> knife

> > and a flat surface. The powders can be taken orally with water,

> with

> > or without food, and do not taste bad.

> >

> > Since some questions have been asked about what ingredients are

> > essential, and since some of the people appear to be taking

> > augmented versions of the simplified GD-MCB treatment approach

that

> I

> > wrote about in my January treatment paper, I want to give you

some

> > history and some comments about that to help you with your own

> > choices about what to take. There's nothing proprietary about

what

> > I've written. I would just like to see people get healthy.

> >

> > I have been trying to figure out CFS for about 10 years, since

a

> > friend of my wife and myself developed it and wasn't given any

hope

> > by

> > her doctor. I started studying biochemistry and physiology,

joined

> > some CFS internet lists, started using PubMed to study the

> published

> > literature, went to the conferences, got Dr. Cheney's tapes,

etc.

> In

> > 1999 I picked up on Dr. Cheney's observation that many of his

> > patients were depleted in glutathione. When I learned of all

the

> > things that glutathione normally does, and saw that many of

these

> > tied in with the symptoms of CFS, I became convinced that this

is a

> > fairly fundamental aspect of the pathophysiology of CFS. So for

> > several years I encouraged PWCs to build their glutathione by

> various

> > means. This helped quite a few, but it was not a cure for most.

It

> > was just a temporary help. Some couldn't tolerate it at all. In

the

> > fall of 2004 I reported this at the AACFS conference in

Madison,

> WI.

> > You can find that poster paper at the phoenix-cfs.com site,

under

> > research.

> >

> > Then in late 2004, a paper came out by S. Jill et al. on

> > autism. I learned for the first time that glutathione was

depleted

> in

> > autistic kids, and that this was tied to problem earlier in the

> > sulfur metabolism, in the methylation cycle. This was a big

BINGO

> for

> > me. It looked as though the same thing was happening in CFS,

and

> now

> > I knew why PWCs could not build up their glutathione levels on

a

> > permanent basis by the methods I had been advocating.

> >

> > I went to the Long Beach DAN! conference and learned more about

> > autism, and I became more convinced that we were dealing with

the

> > same mechanism.

> >

> > I started suggesting some DAN! treatments to the PWCs, using

the

> > Pangborn and Baker book, which is an excellent background book

on

> > this, by the way, and I recommend it. Well, the people who

> > tried this felt somewhat better at first, but then things

turned

> > south for them. Meanwhile, I learned about Amy Yasko's approach

in

> > autism, and I decided that I liked it better, because it

started at

> > the genetic level, and built the biochemistry on top of that,

> dealing

> > with people individually based on their genetic variations. So

> about

> > a year ago I started encouraging PWCs to try Amy's approach.

> >

> > Amy's approach is not simple, easy, quick or cheap, and it has

not

> > been easy for PWCs to do it, but the people doing it have

> experienced

> > benefit and are continuing with it.

> >

> > For the 2007 IACFS conference, I decided to submit another

paper,

> > this time giving the rationale for a methylation block in CFS,

> > connected to the glutathione depletion. It was accepted, but

again

> > only as a poster paper, so I printed up a lot of copies of it

and

> did

> > a personal sales job on as many people at the conference as I

was

> > able. One clinician asked me to write up a

> > description of treatment based on this hypothesis. Later in

January

> I

> > emailed him a treatment writeup, which is what is on the

internet

> > (also at www.phoenix-cfs.com, under Research). In

> > writing this, I knew that the full Yasko treatment approach is

> > probably not going to be practical for most clinicians. Amy has

> > written me that she has not been able to interest many in doing

> what

> > it takes to get up to speed on it and to apply it in individual

> > cases. They just don't have the time, and frankly,

> > many have told me that they do not find biochemistry very easy

to

> > assimilate.

> >

> > So I decided to try including a simpler approach in addition to

> > describing the full Yasko treatment approach. In doing so, I

asked

> > Trina in the cfs_yasko internet group for help, since she is

very

> > knowledgeable about the Yasko treatment approach and is using

it

> > herself. She pointed out some problems with what I had in my

draft,

> > and then

> > suggested a better approach, which I adopted substantially. The

> > simplified approach I put in my treatment article is essentilly

> what

> > Trina suggested, because it made a lot of sense to me. So I

must

> give

> > the credit for this to her. She also suggested including

> nucleotides,

> > but I left them out because there are some in the complete

multi

> (now

> > called the General multi).

> >

> > O.K., so now what do each of the ingredients do, and how

important

> is

> > each one?

> >

> > FolaPro--This is in there because a lot of PWCs have a SNP in

their

> > MTHFR enzyme that affects the production of 5-

> methyltetrahydrofolate,

> > which is the same as FolaPro. This form of folate is the one

used

> by

> > the methionine synthase enzyme, and that's the enzyme that

appears

> to

> > be blocked in many or most cases of CFS. If a person had their

> > genetics characterized, as in the full Yasko approach, they

would

> > know for sure whether they needed this one, but in the

simplified

> > approach we just suggest giving to everyone.

> >

> > Intrinsic B12/folate--This one has 3 forms of folate--FolaPro,

> > folinic acid and folic acid. It also has some cyano-B12 and

some

> > intrinsic factor as well as some other things. The folinic is

> helpful

> > because some people can't use ordinary folic acid well, as a

result

> > of genetic issues. Also, this helps to supply forms of folate

that

> > will make up for the low tetrahydrofolate resulting from the

block

> in

> > methionine synthase. This enzyme normally converts 5-

> > methytetrahydrofolate to tetrahydrofolate, which is needed in

other

> > reactions. This supplement also has some intrinsic factor and

some

> > ordinary B12 supplement to help those who have a type of

pernicious

> > anemia that results from low production of intrinsic factor in

the

> > stomach and which prevents them from absorbing B12 in the gut.

B12

> is

> > also needed by methionine synthase, in the form of

methylcobalamin,

> > but this supplement has cyanocobalamin, which must be converted

in

> > the body by glutathione and SAMe to form methylcobalamin. As

> > glutathione and SAMe come up, this should become more

effective.

> >

> > Complete vitamin and ultra-antioxidant (now called the General

> > Vitamin and Neurological Health Formula)--This is Amy Yasko's

basic

> > high-

> > potency general nutritional supplement. This is kind of a

> foundation

> > for the biochemistry in general. However, I think it's better

for

> > PWCs than other general supplements, because it has particular

> things

> > needed for dealing with a methylation cycle block, including

some

> TMG

> > and sulfur metabolism supplements as well as nucleotides. It is

> also

> > high on magnesium and low on calcium, and has no iron or

copper. So

> I

> > don't think other general supplements do everything this one

does,

> > and I think it's important in the treatment.

> > The TMG helps to get the shortcut pathway in the methylation

cycle

> > going, and that helps to build SAMe, which is needed to get the

> > methionine synthase reaction going. The nucleotides will help

to

> > supply RNA and DNA for new cells until the folate cycle is

working

> > right again.

> >

> > Phosphatidylserine complex--This has various phosphatidyls in

it,

> > which will help repair damaged membranes, including those in

cells

> of

> > the brain and nervous system. It also has some choline, which

can

> be

> > converted to TMG (betaine) in the body, to help start the

shortcut

> > pathway.

> >

> > Perque B12--This is a hefty dose of sublingual

hydroxocobalamin. As

> I

> > said above, B12 is needed to get methionine synthase going.

> > Methylcobalamin is actually the form needed, but some people

cannot

> > tolerate it for genetic reasons, and I'm also concerned that

people

> > with high body burdens of mercury could move mercury into the

brain

> > if they take too much methylcobalamin. Methylcobalamin is the

only

> > substance in biological systems that can methylate mercury, and

> > methylmercury can cross the blood-brain barrier. This

supplement is

> > sublingual to compensate for poor B12 absorption in the gut of

many

> > people.

> >

> > There are also two others that were in the earlier version of

the

> > simplified approach:

> >

> > SAMe--This is normally part of the methylation cycle. Depending

on

> > genetic variations (SNPs or polymorphisms) some people can't

> tolerate

> > much of this, and some need more. The dosage is a compromise.

If

> > people can't tolerate this, they should leave it out, because

> > stimulating the shortcut pathway, using TMG and choline in the

> other

> > supplements) will probably make enough for them.

> >

> > Methylation Support Nutriswitch Formula--This is a mixture of

RNAs

> > that is designed to help the methylation cycle. It is somewhat

> > expensive, and is not essential, but is helpful and worthwhile

if

> > people can afford it.

> >

> > I do think that the forms of

> > folate and B12 are probably essential, because they go after

the

> > basic problem in CFS, in my opinion. I think the General

supplement

> > is important, and, and I think that some way to stimulate the

> > shortcut is important, also. SAMe will help some people but

perhaps

> > not be tolerated by others, and if not, can be left out. The

> > Methylation Support formula is helpful, but could be left out.

> >

> > Adding glutathione support will help some people, as will

adding

> > molybdenum. As more things are added, though, we are moving

toward

> > the full Yasko approach, which is fine, but it is more

complicated

> > and expensive, too. Maybe we should view this simplified

approach

> as

> > the front door to the full Yasko approach. It might work fine

by

> > itself for some people, but for others, maybe they should look

at

> The

> > Puzzle of Autism, sold on www.Amazon.com, to see what else

there

> > might

> > help them. If the simplified approach seems to help to some

degree,

> > and it catches your attention for that reason, but it still

doesn't

> > do the whole job for you, then you could look further at the

the

> full

> > Yasko treatment. At least then you would have some reason to

dig

> into

> > it. Otherwise, it looks pretty daunting to a lot of PWCs.

> >

> > Rich

> >

>

[Guest guest]

Hi, .

Elevated B12 and folate is often seen in people who have a

methylation cycle block. The reason is that they are not able to

convert the form of B12 measured in a standard blood test to the

active form needed by the methylation cycle, which is

methylcobalamin. This puts the folate into the socalled " folate

trap, " and that's why it goes high, too. If you get an urinary

organic acids test, you will be able to look at methylmalonate and

figlu, and those will give you a more accurate picture of whether

your body is able to make use of the B12 and folate properly.

From what you've reported, I think you would be a good candidate for

the simplified treatment approach, which includes hydroxocobalamin

and active forms of folate.

Rich

> > Hi, all.

> >

> > I realise that not everyone here is ecstatic about my approach

to

> > treating CFS, but I like you nevertheless, and I don't want

anyone

> to

> > be left out. So here's the big news:

> >

> > As of this afternoon, the number of PWCs who have notified me

that

> > they are trying the new simplified treatment approach based on

the

> > glutathione depletion--methylation cycle block hypothesis for

CFS

> has

> > reached twenty-four, and several more have informed me that

they

> are

> > planning to start at various times in the future.

> >

> > This has developed from a standing start in late January, 2007.

> Most

> > of these people

> > have been on it for only a few weeks or a few days, the longest

> being

> > a little over three months now. Because the pioneers on this

> > treatment have been posting such good early reports on CFS

internet

> > boards (especially the ImmuneSupport FM/CFS board), there

appears

> to

> > be an avalanche effect going on in terms of new people starting

it

> > over

> > the past few days. I find it quite exciting!

> >

> > One of the first things several have noticed is better sleep.

There

> > are also reports of memory returning, less pain, more energy,

brain

> > fog lifting, improved thyroid function, vulvodynia going away,

and

> > more. I think we are finally hitting the root cause in the

> > biochemistry for many PWCs.

> >

> > I don't yet know whether this treatment will work for " pure

> > fibromyalgia. " I haven't been pushing it for that, because I

don't

> > know how FM develops at the biochemical level. I do think I

> > understand how many cases of CFS develop now, though, and I

believe

> > that the science is in place to support this treatment for CFS.

I

> > presented

> > it in a poster paper at the IACFS conference in January.

> >

> > As many of you may know, I've been trying to figure out CFS for

> over

> > ten

> > years. Thanks to the work of others, including Dr. Cheney and

the

> > autism people, I think we are finally there, at least for a

major

> > subset, and perhaps for the majority of cases.

> >

> > Is there a downside to this treatment? Yes, it doesn't bring a

cure

> > overnight, and there is unavoidable detox to go through,

because

> the

> > body accumulates toxins and infections while a person has CFS.

> Their

> > detox system and their immune system are not operating properly

> > during

> > this time. And the rates of excretion of toxins from the body

are

> > limited. So

> > the more that has accumulated, the longer it will likely take

to

> work

> > off the backlog and clear it all out, so that the person can be

> > healthy again. But I'm convinced that it will happen, if the

person

> > hangs in there with the treatment.

> >

> > So far very few who have started this treatment have quit.

Several

> > find that they need to take breaks to let the detox settle down

to

> a

> > tolerable level, but because they begin experiencing

improvement in

> > CFS

> > symptoms almost immediately, they are motivated to continue.

> >

> > For those interested in the details of this treatment and its

> > history, here's a reprint of something I posted on the

> ImmuneSupport

> > board:

> >

> > Simplified Treatment Approach--Current Version 05/22/07 09:58

AM

> >

> > Here is the current version of the simplified treatment

approach

> > based on the glutathione depletion--methylation cycle block

> > hypothesis.

> >

> > All the supplements can be obtained from

> http://www.holisticheal.com,

> > or you can obtain them elsewhere. The cost is a little over

$2.00

> > per day for all the supplements at the dosages suggested below.

> >

> > These supplements and dosages have been selected by Dr. Amy

Yasko

> as

> > part of her complete treatment approach, as described in her

> > book " The Puzzle of Autism. " Substitutions or changes in

dosages

> may

> > not have the same effect as the combination of supplements and

> > dosages suggested. It's not wise to raise the dosages, at least

for

> > a few weeks, because this can bring on detox at an intensity

that

> is

> > difficult to tolerate. Please be patient and take it easy!

> >

> > Here are the five supplements:

> >

> > 1. one-quarter tablet (200 micrograms) Folapro (Metagenics)

> >

> > 2. one-quarter tablet Intrinsic B12/folate (Metagenics)

> >

> > 3. (up to) 2 tablets (It's best to start with ¼ tablet and work

up

> as

> > tolerated) Complete Vitamin and Neurological Health Formula

> (Holistic

> > Health Consultants)

> >

> > 4. one softgel capsule Phosphatidyl Serine Complex

> >

> > 5. one sublingual lozenge Perque B12

> >

> > The first two supplement tablets can be difficult to break into

> > quarters. An alternative is to crush them into powders, mix the

> > powders together, and divide the powders into quarters using a

> knife

> > and a flat surface. The powders can be taken orally with water,

> with

> > or without food, and do not taste bad.

> >

> > Since some questions have been asked about what ingredients are

> > essential, and since some of the people appear to be taking

> > augmented versions of the simplified GD-MCB treatment approach

that

> I

> > wrote about in my January treatment paper, I want to give you

some

> > history and some comments about that to help you with your own

> > choices about what to take. There's nothing proprietary about

what

> > I've written. I would just like to see people get healthy.

> >

> > I have been trying to figure out CFS for about 10 years, since

a

> > friend of my wife and myself developed it and wasn't given any

hope

> > by

> > her doctor. I started studying biochemistry and physiology,

joined

> > some CFS internet lists, started using PubMed to study the

> published

> > literature, went to the conferences, got Dr. Cheney's tapes,

etc.

> In

> > 1999 I picked up on Dr. Cheney's observation that many of his

> > patients were depleted in glutathione. When I learned of all

the

> > things that glutathione normally does, and saw that many of

these

> > tied in with the symptoms of CFS, I became convinced that this

is a

> > fairly fundamental aspect of the pathophysiology of CFS. So for

> > several years I encouraged PWCs to build their glutathione by

> various

> > means. This helped quite a few, but it was not a cure for most.

It

> > was just a temporary help. Some couldn't tolerate it at all. In

the

> > fall of 2004 I reported this at the AACFS conference in

Madison,

> WI.

> > You can find that poster paper at the phoenix-cfs.com site,

under

> > research.

> >

> > Then in late 2004, a paper came out by S. Jill et al. on

> > autism. I learned for the first time that glutathione was

depleted

> in

> > autistic kids, and that this was tied to problem earlier in the

> > sulfur metabolism, in the methylation cycle. This was a big

BINGO

> for

> > me. It looked as though the same thing was happening in CFS,

and

> now

> > I knew why PWCs could not build up their glutathione levels on

a

> > permanent basis by the methods I had been advocating.

> >

> > I went to the Long Beach DAN! conference and learned more about

> > autism, and I became more convinced that we were dealing with

the

> > same mechanism.

> >

> > I started suggesting some DAN! treatments to the PWCs, using

the

> > Pangborn and Baker book, which is an excellent background book

on

> > this, by the way, and I recommend it. Well, the people who

> > tried this felt somewhat better at first, but then things

turned

> > south for them. Meanwhile, I learned about Amy Yasko's approach

in

> > autism, and I decided that I liked it better, because it

started at

> > the genetic level, and built the biochemistry on top of that,

> dealing

> > with people individually based on their genetic variations. So

> about

> > a year ago I started encouraging PWCs to try Amy's approach.

> >

> > Amy's approach is not simple, easy, quick or cheap, and it has

not

> > been easy for PWCs to do it, but the people doing it have

> experienced

> > benefit and are continuing with it.

> >

> > For the 2007 IACFS conference, I decided to submit another

paper,

> > this time giving the rationale for a methylation block in CFS,

> > connected to the glutathione depletion. It was accepted, but

again

> > only as a poster paper, so I printed up a lot of copies of it

and

> did

> > a personal sales job on as many people at the conference as I

was

> > able. One clinician asked me to write up a

> > description of treatment based on this hypothesis. Later in

January

> I

> > emailed him a treatment writeup, which is what is on the

internet

> > (also at www.phoenix-cfs.com, under Research). In

> > writing this, I knew that the full Yasko treatment approach is

> > probably not going to be practical for most clinicians. Amy has

> > written me that she has not been able to interest many in doing

> what

> > it takes to get up to speed on it and to apply it in individual

> > cases. They just don't have the time, and frankly,

> > many have told me that they do not find biochemistry very easy

to

> > assimilate.

> >

> > So I decided to try including a simpler approach in addition to

> > describing the full Yasko treatment approach. In doing so, I

asked

> > Trina in the cfs_yasko internet group for help, since she is

very

> > knowledgeable about the Yasko treatment approach and is using

it

> > herself. She pointed out some problems with what I had in my

draft,

> > and then

> > suggested a better approach, which I adopted substantially. The

> > simplified approach I put in my treatment article is essentilly

> what

> > Trina suggested, because it made a lot of sense to me. So I

must

> give

> > the credit for this to her. She also suggested including

> nucleotides,

> > but I left them out because there are some in the complete

multi

> (now

> > called the General multi).

> >

> > O.K., so now what do each of the ingredients do, and how

important

> is

> > each one?

> >

> > FolaPro--This is in there because a lot of PWCs have a SNP in

their

> > MTHFR enzyme that affects the production of 5-

> methyltetrahydrofolate,

> > which is the same as FolaPro. This form of folate is the one

used

> by

> > the methionine synthase enzyme, and that's the enzyme that

appears

> to

> > be blocked in many or most cases of CFS. If a person had their

> > genetics characterized, as in the full Yasko approach, they

would

> > know for sure whether they needed this one, but in the

simplified

> > approach we just suggest giving to everyone.

> >

> > Intrinsic B12/folate--This one has 3 forms of folate--FolaPro,

> > folinic acid and folic acid. It also has some cyano-B12 and

some

> > intrinsic factor as well as some other things. The folinic is

> helpful

> > because some people can't use ordinary folic acid well, as a

result

> > of genetic issues. Also, this helps to supply forms of folate

that

> > will make up for the low tetrahydrofolate resulting from the

block

> in

> > methionine synthase. This enzyme normally converts 5-

> > methytetrahydrofolate to tetrahydrofolate, which is needed in

other

> > reactions. This supplement also has some intrinsic factor and

some

> > ordinary B12 supplement to help those who have a type of

pernicious

> > anemia that results from low production of intrinsic factor in

the

> > stomach and which prevents them from absorbing B12 in the gut.

B12

> is

> > also needed by methionine synthase, in the form of

methylcobalamin,

> > but this supplement has cyanocobalamin, which must be converted

in

> > the body by glutathione and SAMe to form methylcobalamin. As

> > glutathione and SAMe come up, this should become more

effective.

> >

> > Complete vitamin and ultra-antioxidant (now called the General

> > Vitamin and Neurological Health Formula)--This is Amy Yasko's

basic

> > high-

> > potency general nutritional supplement. This is kind of a

> foundation

> > for the biochemistry in general. However, I think it's better

for

> > PWCs than other general supplements, because it has particular

> things

> > needed for dealing with a methylation cycle block, including

some

> TMG

> > and sulfur metabolism supplements as well as nucleotides. It is

> also

> > high on magnesium and low on calcium, and has no iron or

copper. So

> I

> > don't think other general supplements do everything this one

does,

> > and I think it's important in the treatment.

> > The TMG helps to get the shortcut pathway in the methylation

cycle

> > going, and that helps to build SAMe, which is needed to get the

> > methionine synthase reaction going. The nucleotides will help

to

> > supply RNA and DNA for new cells until the folate cycle is

working

> > right again.

> >

> > Phosphatidylserine complex--This has various phosphatidyls in

it,

> > which will help repair damaged membranes, including those in

cells

> of

> > the brain and nervous system. It also has some choline, which

can

> be

> > converted to TMG (betaine) in the body, to help start the

shortcut

> > pathway.

> >

> > Perque B12--This is a hefty dose of sublingual

hydroxocobalamin. As

> I

> > said above, B12 is needed to get methionine synthase going.

> > Methylcobalamin is actually the form needed, but some people

cannot

> > tolerate it for genetic reasons, and I'm also concerned that

people

> > with high body burdens of mercury could move mercury into the

brain

> > if they take too much methylcobalamin. Methylcobalamin is the

only

> > substance in biological systems that can methylate mercury, and

> > methylmercury can cross the blood-brain barrier. This

supplement is

> > sublingual to compensate for poor B12 absorption in the gut of

many

> > people.

> >

> > There are also two others that were in the earlier version of

the

> > simplified approach:

> >

> > SAMe--This is normally part of the methylation cycle. Depending

on

> > genetic variations (SNPs or polymorphisms) some people can't

> tolerate

> > much of this, and some need more. The dosage is a compromise.

If

> > people can't tolerate this, they should leave it out, because

> > stimulating the shortcut pathway, using TMG and choline in the

> other

> > supplements) will probably make enough for them.

> >

> > Methylation Support Nutriswitch Formula--This is a mixture of

RNAs

> > that is designed to help the methylation cycle. It is somewhat

> > expensive, and is not essential, but is helpful and worthwhile

if

> > people can afford it.

> >

> > I do think that the forms of

> > folate and B12 are probably essential, because they go after

the

> > basic problem in CFS, in my opinion. I think the General

supplement

> > is important, and, and I think that some way to stimulate the

> > shortcut is important, also. SAMe will help some people but

perhaps

> > not be tolerated by others, and if not, can be left out. The

> > Methylation Support formula is helpful, but could be left out.

> >

> > Adding glutathione support will help some people, as will

adding

> > molybdenum. As more things are added, though, we are moving

toward

> > the full Yasko approach, which is fine, but it is more

complicated

> > and expensive, too. Maybe we should view this simplified

approach

> as

> > the front door to the full Yasko approach. It might work fine

by

> > itself for some people, but for others, maybe they should look

at

> The

> > Puzzle of Autism, sold on www.Amazon.com, to see what else

there

> > might

> > help them. If the simplified approach seems to help to some

degree,

> > and it catches your attention for that reason, but it still

doesn't

> > do the whole job for you, then you could look further at the

the

> full

> > Yasko treatment. At least then you would have some reason to

dig

> into

> > it. Otherwise, it looks pretty daunting to a lot of PWCs.

> >

> > Rich

> >

>

[Guest guest]

Kate

I don't think you understand how important even a full blood count

can be.The ridiculous notion that everything in your tests, or even

your sons is normal, is a croc of crap.My first observations in this

disease process was to compare my full blood counts to my cousins

routine full blood counts.I was missing close to 30 % of my red

cells.This mild anemia, that's ignored, can be indicative of heart or

bone infection.So when your SIMPLY moving up the red cell scale while

doing therapy and feeling better, your on target possably to longer

term improvement.

This yasko fiasco, needing a degree to understand her protocol, and

needing to spend big bucks to do her testing, is BS IMO.You can't

give me this pulling out metals crap. You can only detox properly by

putting in an extra litre of blood and making sure it stays clean by

being processed appropriately thru all the major organs.Adding a pill

to suck up metals and not addressing the fact that your short on

blood, which means the stuff flowing around the body ain't the best

viscosity, is a disaster on it's own.

> > >

> > > Hi, Tony.

> > >

> > > I certainly agree that it is desirable to get some concrete

before

> > > and after lab data on people trying this treatment. However, the

> > > participation of these people is totally voluntary. They are

real

> > > people with real bank accounts (or lack of them) who have to ask

> > real

> > > doctors for lab tests and figure out how to pay for them.

>

[Guest guest]

a

We warned you to MAKE SURE THAT EVERYTHING IN YOUR SAMPLES WAS

REPORTED. Your passion was to send samples off to Igenex for borrelia

testing- you forgot to put in the clause- please inform myself and my

doctor on all orgamnisms cultured, regardless of your philosophies in

the lab....You keep carrying on that I tell you to buy a microscope,

even though, for a borrelia sufferer, with REAL BORRELIA, not

fragment testing, you would be on target to monitor your progress...

BUT AGAIN, basically we keep telling you not to ignore the heavy

growth of any organisms in your head, yet again you will skirt the

real organisms to come around to another of your pet tick borne

theories and accept babesia as your cause and effect..

Good luck

> > > > > >

> > > > > > > > > > Rich

> > > > > > > > > > Can you stop using the words genetic problems,

> > because

> > > > I'm

> > > > > > > ready

> > > > > > > > to

> > > > > > > > > > throw prophanities at you!!!!!!!!!!!

> > > > > > > > > > Myself, alongside many smnart scientists, are not

> > > > > > comfortanble

> > > > > > > > that

> > > > > > > > > > genetic problems all of a sudden multiplied a

> > thousand

> > > > fold

> > > > > > to

> > > > > > > > give

> > > > > > > > > > you fukwits a platform to throw that at us ill

folk.

> > > > > > > > > > cheers tony

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

During my second pregnancy, I kept complaining to my docs that I felt weak and dizzy a lot. They kept brushing it off as "normal" since my blood looked "fine". The day after delivering I felt great, probably due to the post birth euphoria. I got up in the middle of the night to go to the bathroom and promptly passed out and smashed my face into a waste basket (which required a plastic surgeon to stitch up properly). All I ever got out of my doctors was a "mildly anemic" rationale. No apologies for ignoring my complaints, no treatment suggestions or avoidance strategies for the future. They just sent me on my merry way. I look back at my health care when I was first showing symptoms of my illness and it's truly appalling how much doctors choose to overlook. PWC notoriously have all kinds of blood & circulation problems; including hypercoagulation/sticky blood, mediated hypotension/orthostatic

intolerance, low grade anemia, and blood counts which are consistently on the low end of normal, all of which are routinely ignored. penny dumbaussie2000 <dumbaussie2000@...> wrote: Kate I don't think you understand how important even a full blood count can be.The ridiculous notion that everything in your tests, or even your sons is normal, is a croc of crap.My first observations in this

disease process was to compare my full blood counts to my cousins routine full blood counts.I was missing close to 30 % of my red cells.This mild anemia, that's ignored, can be indicative of heart or bone infection.So when your SIMPLY moving up the red cell scale while doing therapy and feeling better, your on target possably to longer term improvement.This yasko fiasco, needing a degree to understand her protocol, and needing to spend big bucks to do her testing, is BS IMO.You can't give me this pulling out metals crap. You can only detox properly by putting in an extra litre of blood and making sure it stays clean by being processed appropriately thru all the major organs.Adding a pill to suck up metals and not addressing the fact that your short on blood, which means the stuff flowing around the body ain't the best viscosity, is a disaster on it's own.> > >> > > Hi, Tony.> > >> > > I certainly agree that it is desirable to get some concrete before> > > and after lab data on people trying this treatment. However, the> > > participation of these people is totally voluntary. They are real> > > people with real bank accounts (or lack of them) who have to ask> > real> > > doctors for lab tests and figure out how to pay for them.>

[Guest guest]

Tony, once again I am an idiot and have no clue what you are talking

about. What I was informing you was that IgeneX IS NOT EXPENSIVE IF

YOU HAVE MEDICARE AND INSURANCE IN THE US. You stated that IgeneX was

expensive.

I never sent blood or urine samples to IgeneX to test for every

bacteria known to man. They only test for borrelia, babesia and

bartonella. I don't have bartonella, and they only test for one

strain of babesia - so I didn't bother. They are pretty sure babesia

is my main infection along with two mycoplasmas and borrelia and EBV

and possibly HHV6 yada yada yada.

a

>

> a

> We warned you to MAKE SURE THAT EVERYTHING IN YOUR SAMPLES WAS

> REPORTED. Your passion was to send samples off to Igenex for

borrelia

> testing- you forgot to put in the clause- please inform myself and

my

> doctor on all orgamnisms cultured, regardless of your philosophies

in

> the lab....You keep carrying on that I tell you to buy a

microscope,

> even though, for a borrelia sufferer, with REAL BORRELIA, not

> fragment testing, you would be on target to monitor your progress...

> BUT AGAIN, basically we keep telling you not to ignore the heavy

> growth of any organisms in your head, yet again you will skirt the

> real organisms to come around to another of your pet tick borne

> theories and accept babesia as your cause and effect..

> Good luck

>

>

>

>

>

>

> > > > > > >

> > > > > > > > > > > Rich

> > > > > > > > > > > Can you stop using the words genetic problems,

> > > because

> > > > > I'm

> > > > > > > > ready

> > > > > > > > > to

> > > > > > > > > > > throw prophanities at you!!!!!!!!!!!

> > > > > > > > > > > Myself, alongside many smnart scientists, are

not

> > > > > > > comfortanble

> > > > > > > > > that

> > > > > > > > > > > genetic problems all of a sudden multiplied a

> > > thousand

> > > > > fold

> > > > > > > to

> > > > > > > > > give

> > > > > > > > > > > you fukwits a platform to throw that at us ill

> folk.

> > > > > > > > > > > cheers tony

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

a

Wake up!!! you have a huge infection in your head!!!!You suffer from

ME your expected to have problems in this region..Leave your pets at

home and get onto real bacteria not imaginary stuff.

tony

> > > > > > > >

> > > > > > > > > > > > Rich

> > > > > > > > > > > > Can you stop using the words genetic

problems,

> > > > because

> > > > > > I'm

> > > > > > > > > ready

> > > > > > > > > > to

> > > > > > > > > > > > throw prophanities at you!!!!!!!!!!!

> > > > > > > > > > > > Myself, alongside many smnart scientists, are

> not

> > > > > > > > comfortanble

> > > > > > > > > > that

> > > > > > > > > > > > genetic problems all of a sudden multiplied a

> > > > thousand

> > > > > > fold

> > > > > > > > to

> > > > > > > > > > give

> > > > > > > > > > > > you fukwits a platform to throw that at us

ill

> > folk.

> > > > > > > > > > > > cheers tony

> > > > > > > > > > > >

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I have insurance and Igenex was still very expensive for me. My insurance didn't cover them well at all. pennypjeanneus <pj7@...> wrote: Tony, once again I am an idiot and have no clue what you are talking about. What I was informing you was that IgeneX IS NOT EXPENSIVE IF YOU HAVE MEDICARE AND INSURANCE IN THE US. You stated that IgeneX was expensive. I never sent blood or urine samples to IgeneX to test for every bacteria known to man. They only test for

borrelia, babesia and bartonella. I don't have bartonella, and they only test for one strain of babesia - so I didn't bother. They are pretty sure babesia is my main infection along with two mycoplasmas and borrelia and EBV and possibly HHV6 yada yada yada.a>> a> We warned you to MAKE SURE THAT EVERYTHING IN YOUR SAMPLES WAS > REPORTED. Your passion was to send samples off to Igenex for borrelia > testing- you forgot to put in the clause- please inform myself and my > doctor on all orgamnisms cultured, regardless of your philosophies in > the lab....You keep carrying on that I tell you to buy a microscope, > even though, for a borrelia sufferer, with REAL BORRELIA, not > fragment testing, you would be on target to monitor your progress...> BUT AGAIN, basically we keep telling you not to ignore the heavy > growth of any organisms in your head, yet

again you will skirt the > real organisms to come around to another of your pet tick borne > theories and accept babesia as your cause and effect..> Good luck > > > > > > > > > > > > > > > > > > > > > > > > Rich> > > > > > > > > > > Can you stop using the words genetic problems, > > > because > > > > > I'm > > > > > > > > ready > > > > > > > > > to> > > > > > > > > > > throw prophanities at you!!!!!!!!!!!> > > > > > > > > > > Myself, alongside many smnart scientists, are not > > > > > > > comfortanble > > > > > > > > > that> > > > > > > > > > > genetic problems all of a sudden multiplied a > > > thousand > > > > > fold > > > > > > > to > > > > > > > > >

give> > > > > > > > > > > you fukwits a platform to throw that at us ill > folk.> > > > > > > > > > > cheers tony> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

On May 31, 2007, at 7:18 PM, dumbaussie2000 wrote:

> Kate

> I don't think you understand how important even a full blood count

> can be.The ridiculous notion that everything in your tests, or even

> your sons is normal, is a croc of crap.

Tony, our red cells are fine, but we are both often low on whites.

- Kate

[Guest guest]

Tony, our red cells are fine, but we are both often low on whites. Define "fine". I think if you look at pwc blood compared to the blood of "norms", we're often on the 'low normal' end of the spectrum. Not enough to cause doctors to notice, but as a whole, kind of significant. Also, have you viewed your blood cells under a microscope compared to "norms"? That is often an eye opening experience for many pwc. We need to scrutinize these tests more closely. Look for patterns. Our condition can be reflected in our blood, even if it's subtle. We wouldn't be pwcs if our tests didn't usually show up as "normal" for just about everything. Otherwise, we'd be dx'd with some kind of acknowledged disease. Unfortunately, by the time people start having abnormal test results, it often means the situation has

progressed to life & death. pennyKate <KateDunlay@...> wrote: On May 31, 2007, at 7:18 PM, dumbaussie2000 wrote:> Kate> I don't think you understand how important even a full blood count> can be.The ridiculous notion that everything in your tests, or even> your sons is normal, is a croc of crap.Tony, our red cells are fine, but we are both often low on whites.- Kate

[Guest guest]

kate that is the silliest thing i've heard..you can't suffer without a

tip IMO

wrote:

>

> On May 31, 2007, at 7:18 PM, dumbaussie2000 wrote:

> > Kate

> > I don't think you understand how important even a full blood count

> > can be.The ridiculous notion that everything in your tests, or even

> > your sons is normal, is a croc of crap.

>

> Tony, our red cells are fine, but we are both often low on whites.

>

> - Kate

>

[Guest guest]

Yes, I understand, Penny. There is a definite advantage to having

Medicare primary. It is enough to make one vote for socialized

medicine. I have not had to pay IgeneX one dime, not even for the PCR

on spinal fluid.

a

>

> I have insurance and Igenex was still very expensive for me. My

insurance didn't cover them well at all.

>

> penny

>

> pjeanneus <pj7@...> wrote:

> Tony, once again I am an idiot and have no clue what you

are talking

> about. What I was informing you was that IgeneX IS NOT EXPENSIVE IF

> YOU HAVE MEDICARE AND INSURANCE IN THE US. You stated that IgeneX

was

> expensive.

>

> I never sent blood or urine samples to IgeneX to test for every

> bacteria known to man. They only test for borrelia, babesia and

> bartonella. I don't have bartonella, and they only test for one

> strain of babesia - so I didn't bother. They are pretty sure

babesia

> is my main infection along with two mycoplasmas and borrelia and

EBV

> and possibly HHV6 yada yada yada.

>

> a

>

> >

> > a

> > We warned you to MAKE SURE THAT EVERYTHING IN YOUR SAMPLES WAS

> > REPORTED. Your passion was to send samples off to Igenex for

> borrelia

> > testing- you forgot to put in the clause- please inform myself

and

> my

> > doctor on all orgamnisms cultured, regardless of your

philosophies

> in

> > the lab....You keep carrying on that I tell you to buy a

> microscope,

> > even though, for a borrelia sufferer, with REAL BORRELIA, not

> > fragment testing, you would be on target to monitor your

progress...

> > BUT AGAIN, basically we keep telling you not to ignore the heavy

> > growth of any organisms in your head, yet again you will skirt

the

> > real organisms to come around to another of your pet tick borne

> > theories and accept babesia as your cause and effect..

> > Good luck

> >

> >

> >

> >

> >

> >

> > > > > > > >

> > > > > > > > > > > > Rich

> > > > > > > > > > > > Can you stop using the words genetic

problems,

> > > > because

> > > > > > I'm

> > > > > > > > > ready

> > > > > > > > > > to

> > > > > > > > > > > > throw prophanities at you!!!!!!!!!!!

> > > > > > > > > > > > Myself, alongside many smnart scientists, are

> not

> > > > > > > > comfortanble

> > > > > > > > > > that

> > > > > > > > > > > > genetic problems all of a sudden multiplied a

> > > > thousand

> > > > > > fold

> > > > > > > > to

> > > > > > > > > > give

> > > > > > > > > > > > you fukwits a platform to throw that at us

ill

> > folk.

> > > > > > > > > > > > cheers tony

> > > > > > > > > > > >

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Kate some guy called wintergreen or something soundiung like that

created the parameters for blood counts-IT DOESN'T MEAN YOUR FINE, AS

IS FED YOU WHEN SOMETHING IS IN RANGE.This inerpretation of YEAH

EVERYTHINGS NORMAL ain't correct at all. Your baseline results suffer,

while siuffering, and this needs interpretation.

Whenever I suffered massive pain my blood pressure would sit around 200

over 100 like clockwork, so if anyone tried to feed me the pain is

imaginary I'd konk them on the head...You can look for swings away from

the true norm, to realise it ain't normal for the human body to go thru

what it's going thru in these diseases.

Also what you don't understand this testing toime and time again is

more of a business transaction that can take place because insurance

would cover it or that medicare would reimburse the pathology lab.Your

results ain't alway's at the top of the thinking-It's the finacial can

we get away with it and get payed and keep our doctors testing, that's

at the heart of the agenda- doctors also get looked after by path labs.

Do you recall this on the MP forum- A lady that was doing the herxing

had some great sets of blood count reports-I said that when your

suffering a so called herx you'll observe red cell destruction and

plataelet coagulation/clumping dropping both these values in blood

counts- sure enough exactly as I predicted gher husband said you got it

right on and sent me the results.

So if you like being a mushroom keep doing genetic testing and

foocusing on things that can't be interpreted.

tony

> > Kate

> > I don't think you understand how important even a full blood count

> > can be.The ridiculous notion that everything in your tests, or even

> > your sons is normal, is a croc of crap.

>

> Tony, our red cells are fine, but we are both often low on whites.

>

> - Kate

>

[Guest guest]

More on full blood count reports is that platelets are ranged from

150 to 450 if you drop out at the 150 end- your dead almost.

> > > Kate

> > > I don't think you understand how important even a full blood

count

> > > can be.The ridiculous notion that everything in your tests, or

even

> > > your sons is normal, is a croc of crap.

> >

> > Tony, our red cells are fine, but we are both often low on whites.

> >

> > - Kate

> >

>

[Guest guest]

On Jun 1, 2007, at 12:35 PM, Penny Houle wrote:

> Also, have you viewed your blood cells under a microscope compared

> to " norms " ? That is often an eye opening experience for many pwc.

Not for a long time! Oh for the days when my family doc used to prick

our fingers and look under the microscope and then test our iron

right there in the office.

- Kate

[Guest guest]

On Jun 1, 2007, at 7:20 PM, pjeanneus wrote:

> Yes, I understand, Penny. There is a definite advantage to having

> Medicare primary. It is enough to make one vote for socialized

> medicine. I have not had to pay IgeneX one dime, not even for the PCR

> on spinal fluid.

a, I live in Canada with socialized medicine, but Lyme tests from

IGeneX are definitely not paid for here! Not only that, but it is

harder to access any kind of alternative care than it is in the

States. That is one reason Canadians travel to the States for care.

The other is the ridiculous wait times for treatment.

- Kate

[Guest guest]

On Jun 2, 2007, at 12:28 AM, dumbaussie2000 wrote:

> Whenever I suffered massive pain my blood pressure would sit around

> 200

> over 100 like clockwork, so if anyone tried to feed me the pain is

> imaginary I'd konk them on the head...

Well I guess I'm not you, because when I suffer pain, my blood

pressure is about the same as it always is. Fine.

- Kate

[Guest guest]

Maybe not blood pressure, but something has to be affected when you have pain. The inflammatory response, for example. You'd have to be a robot to not have some kind of effect. pennyKate <KateDunlay@...> wrote: On Jun 2, 2007, at 12:28 AM, dumbaussie2000 wrote:> Whenever I suffered massive pain my blood pressure would sit around > 200> over 100 like clockwork, so if anyone tried to feed me the pain is> imaginary I'd konk them on the

head...Well I guess I'm not you, because when I suffer pain, my blood pressure is about the same as it always is. Fine.- Kate

[Guest guest]

I'm pretty sure I have some sort of inflammation, but not the kind

that can be measured by tests one can get through the medical system.

By standard measurements I have like zero inflammation. Maybe certain

cytokines ...

- Kate

On Jun 2, 2007, at 3:13 PM, Penny Houle wrote:

> Maybe not blood pressure, but something has to be affected when you

> have pain. The inflammatory response, for example. You'd have to be

> a robot to not have some kind of effect.

>

> penny

>

> Kate <KateDunlay@...> wrote:

>

> On Jun 2, 2007, at 12:28 AM, dumbaussie2000 wrote:

> > Whenever I suffered massive pain my blood pressure would sit around

> > 200

> > over 100 like clockwork, so if anyone tried to feed me the pain is

> > imaginary I'd konk them on the head...

>

> Well I guess I'm not you, because when I suffer pain, my blood

> pressure is about the same as it always is. Fine.

>

> - Kate

>

>

[Guest guest]

This is what doctors want you to believe. Pwc's blood tests are almost always "normal" but when I talk to people in depth about their tests, they usually have some numbers that will consistently register on the low normal or high normal ends and will fluctuate depending on how sick they are. You yourself just said your blood is "thinner" than average. Do you know why? Or how long it's been that way? The problem with this is that we've only got so many clues to try to figure out what's wrong. If we wait until our numbers are extreme, then we've waited too long. The people with the extreme numbers are the ones whose lives are at risk by then. I always get copies of all my blood work to track what's going on, what's fluctuating and relate that to how I feel. I actually took a color graph of my thyroid test results to my doc, and that's what finally

convinced her that I needed a different drug, which I'd been saying for over 2 years. They just kept adjusting my dose up and down and my hormones kept swinging up and down and I felt crummy, but until they saw it illustrated in a pretty graph on paper, they didn't take it seriously. They just didn't see that big of a difference. Sure enough, a natural rather than the synthetic hormone made all the difference, even though it wasn't considered the "community standard". It's these kinds of attitudes by the people analyzing us that are hurting us. penny Kate <KateDunlay@...> wrote: I'm pretty sure I have some sort of inflammation, but not the kind that can be measured by tests one can get through the medical system. By standard measurements I have like zero inflammation. Maybe certain cytokines ...- KateOn Jun 2, 2007, at 3:13 PM, Penny Houle wrote:> Maybe not blood pressure, but something has to be affected when you > have pain. The inflammatory response, for example. You'd have to be > a robot to not have some kind of effect.>> penny>> Kate <KateDunlayhfx (DOT) eastlink.ca> wrote:>> On Jun 2, 2007, at 12:28 AM, dumbaussie2000 wrote:> > Whenever I suffered massive pain my blood pressure would

sit around> > 200> > over 100 like clockwork, so if anyone tried to feed me the pain is> > imaginary I'd konk them on the head...>> Well I guess I'm not you, because when I suffer pain, my blood> pressure is about the same as it always is. Fine.>> - Kate>>

[Guest guest]

There is a lot going on in your body and it can be measured and

viewed. Unfortuntely loosing 25 % of your red blood cells isn't being

considered a problem...

> > Whenever I suffered massive pain my blood pressure would sit

around

> > 200

> > over 100 like clockwork, so if anyone tried to feed me the pain is

> > imaginary I'd konk them on the head...

>

> Well I guess I'm not you, because when I suffer pain, my blood

> pressure is about the same as it always is. Fine.

>

> - Kate

>

[Guest guest]

Kate

What exactly are you suffering from? -

-- In infections , Kate

<KateDunlay@...> wrote:

>

> I'm pretty sure I have some sort of inflammation, but not the kind

> that can be measured by tests one can get through the medical

system.

> By standard measurements I have like zero inflammation. Maybe

certain

> cytokines ...

>

> - Kate

>

>

> On Jun 2, 2007, at 3:13 PM, Penny Houle wrote:

>

> > Maybe not blood pressure, but something has to be affected when

you

> > have pain. The inflammatory response, for example. You'd have to

be

> > a robot to not have some kind of effect.

> >

> > penny

> >

> > Kate <KateDunlay@...> wrote:

> >

> > On Jun 2, 2007, at 12:28 AM, dumbaussie2000 wrote:

> > > Whenever I suffered massive pain my blood pressure would sit

around

> > > 200

> > > over 100 like clockwork, so if anyone tried to feed me the pain

is

> > > imaginary I'd konk them on the head...

> >

> > Well I guess I'm not you, because when I suffer pain, my blood

> > pressure is about the same as it always is. Fine.

> >

> > - Kate

> >

> >

>

[Guest guest]

On Jun 3, 2007, at 12:11 AM, dumbaussie2000 wrote:

> Kate

> What exactly are you suffering from? -

Chronic pain and fatigue. But if I knew " exactly " what it was, I

probably wouldn't still be looking ; - )

[Guest guest]

I've been reading Dubois' Lupus. It's awesome. One thing I learned is

that rheumies are frequently somewhat perplexed by complaints of

profound fatigue during periods when lupus patients have a pretty

clean looking serologic picture and low " disease activity " (which I

take it might encompass things like ESR, urinary protein, rash,

objective joint swelling, etc).

I would guess that the same might be true of pain, which is not

terribly well distinct from fatigue anyway.

So, one need not have a cheesy dx like CFS in order to experience

" inexplicable " symptoms.

Also interestingly, 50% of SLE patients stated fatigue was their worst

problem.

> I'm pretty sure I have some sort of inflammation, but not the kind

> that can be measured by tests one can get through the medical system.

> By standard measurements I have like zero inflammation. Maybe certain

> cytokines ...

>

> - Kate

>