Re: Chenney -- Syndrome X - and Vitamin D

[Guest guest]

Thank's for that Ken, it's a very good and smart article, I would

start looking at the newcastle literature and the cell membrane

damaging toxins produced by coagulase negative staph in the sinuses

as a possable explanation for cell membrane damage. I did test low

on potassium early in the ilness, outside of eating well I never

supplement- but I may attempt a bit of potassium.

-How long would you think it would take to get potassium right- as

your articles on D show upto and over a year is frequently the case.

tony

-- In infections , " Ken "

<ken_lassesen@y...> wrote:

> Background of Syndrome " X "

>

> " Physiology

>

> Professor Behan found " a functional disorder of cell

membrane " in the ion channel. They begin exercise with a lower

capacity that shows " the patients aren't faking it " and do get worse

from

> exercise. In addition to exercise, the other things that can have

an effect on the ion channel include alcohol, quinine, and

anesthetics. The PWC/MEs " showed irregularities in the handling of

> potassium, " said Behan. These were not related to ischemia. The

SPECT scan results were similar to those in syndrome X and could

affect such neurochemicals or neurohormones as acetylcholine and

> serotonin. This new discovery showed that the cells are leaking

potassium and a lot of energy required to keep potassium in the

cells is being expended by the patient. This may be the reason that

the

> heart muscle is not pumping as much as it should. Dr. Kenny De

Meirleir spoke on the RED diagnostic test that was being used to

detect the RNase L Dysfunction in PAC/MEs taking Ampligen. This is

not

> the technique used by Dr. Suhadolnik but, instead, is based on the

description given by Charachon et al (Biochemistry 29:2550-2556,

1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a

> disorder of the circulation. " From http://www.ncf-

net.org/forum/aacfsreview.htm

>

>

> Just found this citation while looking for other things:

>

> Inadequate vitamin D status: does it contribute to the disorders

comprising syndrome 'X'? Boucher BJ.

>

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9624222 & query_hl=11

>

> A search on medline for:

> " syndrome X " [All Fields] AND " vitamin D " [All Fields]

> found some 6 more articles.

[Guest guest]

My feeling is that Blaisi (see

AlfredblasiprotocolFMSCFS/ ) may

be a part of the total solution for many. I get the impression that a

lot of issues are body-responses are due to imbalances, not just one

or two, but many -- hence after 7 years, finally tossing my sanity

aside and suggesting a protocol " For What's Its worth " (I do like

honesty) AKA " No Deficiency Left Behind " .

Yes - you are likely right, one plus year is not unreasonable. The

catch is that it seems do-able by all (the polls on experimental

showed that many protocols have too many adverse reactions) -- just

taking what you can tolerate, take breaks when you need to --- but

know that you need to get everything up to the **optimal level** if

known, or to the 50%ile (Median, middle of the Reference Range) if it

is not known.

Remember, it takes 6 months of severe illness AT LEAST to get a CFIDS

diagnosis --- 6 months of the immune system being upregulated and

tossing everything it can at the infection; totally exhausting itself

in the process (to translate into Aussie, think Gallipoli). Tons of

things get exhausted and the body goes into craving mode -- which

means leaky gut --- trying to get more nutrients in (unfortunately

also allowing allergens in too!) and likely the cell membrane

leaking. It may be newcastle --- but it could also be the effect of

long term deficiencies. I do not know. I tend to favor deficiencies --

because it is a more hopeful theory (definitely actionable).

I did a chart of my " model " of the illness at

http://lassesen.com/cfids/model.htm and of my solution at

http://lassesen.com/cfids/ZeroBasedProtocol.htm

- again, they are just model -- which IMHO agree with a lot of the

reported observations -- and tend to favor **actionable** causes

[which is a political choice -- gives a sense of being able to do

something about things].

> > Background of Syndrome " X "

> >

> > " Physiology

> >

> > Professor Behan found " a functional disorder of cell

> membrane " in the ion channel. They begin exercise with a lower

> capacity that shows " the patients aren't faking it " and do get

worse

> from

> > exercise. In addition to exercise, the other things that can have

> an effect on the ion channel include alcohol, quinine, and

> anesthetics. The PWC/MEs " showed irregularities in the handling of

> > potassium, " said Behan. These were not related to ischemia. The

> SPECT scan results were similar to those in syndrome X and could

> affect such neurochemicals or neurohormones as acetylcholine and

> > serotonin. This new discovery showed that the cells are leaking

> potassium and a lot of energy required to keep potassium in the

> cells is being expended by the patient. This may be the reason that

> the

> > heart muscle is not pumping as much as it should. Dr. Kenny De

> Meirleir spoke on the RED diagnostic test that was being used to

> detect the RNase L Dysfunction in PAC/MEs taking Ampligen. This is

> not

> > the technique used by Dr. Suhadolnik but, instead, is based on

the

> description given by Charachon et al (Biochemistry 29:2550-2556,

> 1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a

> > disorder of the circulation. " From http://www.ncf-

> net.org/forum/aacfsreview.htm

> >

> >

> > Just found this citation while looking for other things:

> >

> > Inadequate vitamin D status: does it contribute to the disorders

> comprising syndrome 'X'? Boucher BJ.

> >

> > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9624222 & query_hl=11

> >

> > A search on medline for:

> > " syndrome X " [All Fields] AND " vitamin D " [All Fields]

> > found some 6 more articles.

[Guest guest]

Ken

I wouldn't downplay newcastle studies. To many people the shock of

discovering how messed up the sinuses are sums up how they did there

job well. Remember no other group has studied bacteria in cfs and

autism like these guys.96% have sinus issues.

It's also pleasant to place a drop of blood in the middle of a

culture plate and grow bacteria and deal with them appropriately as

diffivcult as eradication may be, it's still a work in progess

(alway's less bacteria not eradicated completely).-The only

unfortunate thing is dealing with accelerated ageing with these

conditions..

-- In infections , " Ken "

<ken_lassesen@y...> wrote:

> My feeling is that Blaisi (see

> AlfredblasiprotocolFMSCFS/ )

may

> be a part of the total solution for many. I get the impression

that a

> lot of issues are body-responses are due to imbalances, not just

one

> or two, but many -- hence after 7 years, finally tossing my sanity

> aside and suggesting a protocol " For What's Its worth " (I do like

> honesty) AKA " No Deficiency Left Behind " .

>

> Yes - you are likely right, one plus year is not unreasonable. The

> catch is that it seems do-able by all (the polls on experimental

> showed that many protocols have too many adverse reactions) --

just

> taking what you can tolerate, take breaks when you need to --- but

> know that you need to get everything up to the **optimal level**

if

> known, or to the 50%ile (Median, middle of the Reference Range) if

it

> is not known.

>

> Remember, it takes 6 months of severe illness AT LEAST to get a

CFIDS

> diagnosis --- 6 months of the immune system being upregulated and

> tossing everything it can at the infection; totally exhausting

itself

> in the process (to translate into Aussie, think Gallipoli). Tons

of

> things get exhausted and the body goes into craving mode -- which

> means leaky gut --- trying to get more nutrients in (unfortunately

> also allowing allergens in too!) and likely the cell membrane

> leaking. It may be newcastle --- but it could also be the effect

of

> long term deficiencies. I do not know. I tend to favor

deficiencies --

> because it is a more hopeful theory (definitely actionable).

>

> I did a chart of my " model " of the illness at

> http://lassesen.com/cfids/model.htm and of my solution at

> http://lassesen.com/cfids/ZeroBasedProtocol.htm

>

> - again, they are just model -- which IMHO agree with a lot of the

> reported observations -- and tend to favor **actionable** causes

> [which is a political choice -- gives a sense of being able to do

> something about things].

>

>

>

> > > Background of Syndrome " X "

> > >

> > > " Physiology

> > >

> > > Professor Behan found " a functional disorder of cell

> > membrane " in the ion channel. They begin exercise with a lower

> > capacity that shows " the patients aren't faking it " and do get

> worse

> > from

> > > exercise. In addition to exercise, the other things that can

have

> > an effect on the ion channel include alcohol, quinine, and

> > anesthetics. The PWC/MEs " showed irregularities in the handling

of

> > > potassium, " said Behan. These were not related to ischemia.

The

> > SPECT scan results were similar to those in syndrome X and could

> > affect such neurochemicals or neurohormones as acetylcholine and

> > > serotonin. This new discovery showed that the cells are

leaking

> > potassium and a lot of energy required to keep potassium in the

> > cells is being expended by the patient. This may be the reason

that

> > the

> > > heart muscle is not pumping as much as it should. Dr. Kenny De

> > Meirleir spoke on the RED diagnostic test that was being used to

> > detect the RNase L Dysfunction in PAC/MEs taking Ampligen. This

is

> > not

> > > the technique used by Dr. Suhadolnik but, instead, is based on

> the

> > description given by Charachon et al (Biochemistry 29:2550-2556,

> > 1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a

> > > disorder of the circulation. " From http://www.ncf-

> > net.org/forum/aacfsreview.htm

> > >

> > >

> > > Just found this citation while looking for other things:

> > >

> > > Inadequate vitamin D status: does it contribute to the

disorders

> > comprising syndrome 'X'? Boucher BJ.

> > >

> > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> >

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9624222 & query_hl=11

> > >

> > > A search on medline for:

> > > " syndrome X " [All Fields] AND " vitamin D " [All Fields]

> > > found some 6 more articles.

[Guest guest]

My dentist was taken aback when he read about the work done by

Newcastle University, shame he's not also my GP.

Ken has made some very valid points here, they apply to many who have

the symptoms of CFIDS regardless of what pathogens and toxins might

be involved. There are many of us who just go downhill on the kind of

ABx protocols often being pushed as the answer to various chronic

infections, so we end up having to go back to basics again. This does

mean we will not try ABx and AFx again in the future, but there's no

point is making ourselves worse because either the meds used or the

effects of the meds, end up causing more problems than they solve.

Tansy

> > > > Background of Syndrome " X "

> > > >

> > > > " Physiology

> > > >

> > > > Professor Behan found " a functional disorder of cell

> > > membrane " in the ion channel. They begin exercise with a lower

> > > capacity that shows " the patients aren't faking it " and do get

> > worse

> > > from

> > > > exercise. In addition to exercise, the other things that can

> have

> > > an effect on the ion channel include alcohol, quinine, and

> > > anesthetics. The PWC/MEs " showed irregularities in the handling

> of

> > > > potassium, " said Behan. These were not related to ischemia.

> The

> > > SPECT scan results were similar to those in syndrome X and

could

> > > affect such neurochemicals or neurohormones as acetylcholine

and

> > > > serotonin. This new discovery showed that the cells are

> leaking

> > > potassium and a lot of energy required to keep potassium in the

> > > cells is being expended by the patient. This may be the reason

> that

> > > the

> > > > heart muscle is not pumping as much as it should. Dr. Kenny

De

> > > Meirleir spoke on the RED diagnostic test that was being used

to

> > > detect the RNase L Dysfunction in PAC/MEs taking Ampligen. This

> is

> > > not

> > > > the technique used by Dr. Suhadolnik but, instead, is based

on

> > the

> > > description given by Charachon et al (Biochemistry 29:2550-

2556,

> > > 1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a

> > > > disorder of the circulation. " From http://www.ncf-

> > > net.org/forum/aacfsreview.htm

> > > >

> > > >

> > > > Just found this citation while looking for other things:

> > > >

> > > > Inadequate vitamin D status: does it contribute to the

> disorders

> > > comprising syndrome 'X'? Boucher BJ.

> > > >

> > > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> > >

> cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9624222 & query_hl=11

> > > >

> > > > A search on medline for:

> > > > " syndrome X " [All Fields] AND " vitamin D " [All Fields]

> > > > found some 6 more articles.

[Guest guest]

From my own personal experience your model has been very true to me.

Without following your FWIW protocol I sort of made up a protocol on

my own that was similar. It was never my intent to make a protocol

and much of what I did was out of survival mode. But it worked.

I still can not encourage it enough though that people REALLY need

to look at the hypercoagulation issues. People like Tansy never

imagined it could have been true in her case, but eventually decided

to try Bromelain and see what happens. She had to do this without

the beneift of an ISAC panel. She experienced significant changes,

enough so that she now believes that hypercoagulation also played a

major role in her ill health.

I don't know of but a handful of people who have achieved a very

high degree of remission. Of those, the majority used heparin. Now

there are other options besides heparin and there is really no

reason not to look into them. It just might be the Teflon coating

preventing you from breaking through to the other side.

> > > Background of Syndrome " X "

> > >

> > > " Physiology

> > >

> > > Professor Behan found " a functional disorder of cell

> > membrane " in the ion channel. They begin exercise with a lower

> > capacity that shows " the patients aren't faking it " and do get

> worse

> > from

> > > exercise. In addition to exercise, the other things that can

have

> > an effect on the ion channel include alcohol, quinine, and

> > anesthetics. The PWC/MEs " showed irregularities in the handling

of

> > > potassium, " said Behan. These were not related to ischemia.

The

> > SPECT scan results were similar to those in syndrome X and could

> > affect such neurochemicals or neurohormones as acetylcholine and

> > > serotonin. This new discovery showed that the cells are

leaking

> > potassium and a lot of energy required to keep potassium in the

> > cells is being expended by the patient. This may be the reason

that

> > the

> > > heart muscle is not pumping as much as it should. Dr. Kenny De

> > Meirleir spoke on the RED diagnostic test that was being used to

> > detect the RNase L Dysfunction in PAC/MEs taking Ampligen. This

is

> > not

> > > the technique used by Dr. Suhadolnik but, instead, is based on

> the

> > description given by Charachon et al (Biochemistry 29:2550-2556,

> > 1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a

> > > disorder of the circulation. " From http://www.ncf-

> > net.org/forum/aacfsreview.htm

> > >

> > >

> > > Just found this citation while looking for other things:

> > >

> > > Inadequate vitamin D status: does it contribute to the

disorders

> > comprising syndrome 'X'? Boucher BJ.

> > >

> > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> >

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9624222 & query_hl=11

> > >

> > > A search on medline for:

> > > " syndrome X " [All Fields] AND " vitamin D " [All Fields]

> > > found some 6 more articles.

[Guest guest]

Jelly

It was being thrombocytopenic that threw me, thank goodness you kept

plugging away at it back then. Berg, and a few doctors who

treat this, helped make sense of my low platelets/high fibrinogen and

past medical history. I would not wish what happened at one stage of

breaking down the fibrin on anyone, but after I recovered the risk

turned out worth taking. Berg wanted me to be monitotred due to

my medical history, fat chance of that in the UK, so I self-treated.

Six months later the fibrinogen levels were no longer as high and my

platelets came up proportionally too.

Cheers, Tansy

> > > > Background of Syndrome " X "

> > > >

> > > > " Physiology

> > > >

> > > > Professor Behan found " a functional disorder of cell

> > > membrane " in the ion channel. They begin exercise with a lower

> > > capacity that shows " the patients aren't faking it " and do get

> > worse

> > > from

> > > > exercise. In addition to exercise, the other things that can

> have

> > > an effect on the ion channel include alcohol, quinine, and

> > > anesthetics. The PWC/MEs " showed irregularities in the handling

> of

> > > > potassium, " said Behan. These were not related to ischemia.

> The

> > > SPECT scan results were similar to those in syndrome X and

could

> > > affect such neurochemicals or neurohormones as acetylcholine

and

> > > > serotonin. This new discovery showed that the cells are

> leaking

> > > potassium and a lot of energy required to keep potassium in the

> > > cells is being expended by the patient. This may be the reason

> that

> > > the

> > > > heart muscle is not pumping as much as it should. Dr. Kenny

De

> > > Meirleir spoke on the RED diagnostic test that was being used

to

> > > detect the RNase L Dysfunction in PAC/MEs taking Ampligen. This

> is

> > > not

> > > > the technique used by Dr. Suhadolnik but, instead, is based

on

> > the

> > > description given by Charachon et al (Biochemistry 29:2550-

2556,

> > > 1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a

> > > > disorder of the circulation. " From http://www.ncf-

> > > net.org/forum/aacfsreview.htm

> > > >

> > > >

> > > > Just found this citation while looking for other things:

> > > >

> > > > Inadequate vitamin D status: does it contribute to the

> disorders

> > > comprising syndrome 'X'? Boucher BJ.

> > > >

> > > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> > >

> cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9624222 & query_hl=11

> > > >

> > > > A search on medline for:

> > > > " syndrome X " [All Fields] AND " vitamin D " [All Fields]

> > > > found some 6 more articles.

[Guest guest]

Aussie,

The problem is that antibiotics are neither 100% tolerated nor 100%

effective for all CFIDS patients. I first thought that anticoagulants

first would improve that --- it does not change things as much as

desired. I greatly appreciate the Newcastle work.

The supplements/correcting deficiences ***aggressively*** first,

although slower, appears to be tolerable to all (not always fast) and

lessen symptoms in most. Then anticoagulants, and finally the

antibiotics....

What I want is something that is tolerated by 100% and effective for

90-95% (remember CFIDS is a catch all). The supplements will

eliminate one class of CFIDS patients that have deficiencies that

were missed by the MDs, every group we can eliminate is a gain --

makes the reminder more homogenuous.

> > > > > Background of Syndrome " X "

> > > > >

> > > > > " Physiology

> > > > >

> > > > > Professor Behan found " a functional disorder of cell

> > > > membrane " in the ion channel. They begin exercise with a

lower

> > > > capacity that shows " the patients aren't faking it " and do

get

> > > worse

> > > > from

> > > > > exercise. In addition to exercise, the other things that

can

> > have

> > > > an effect on the ion channel include alcohol, quinine, and

> > > > anesthetics. The PWC/MEs " showed irregularities in the

handling

> > of

> > > > > potassium, " said Behan. These were not related to ischemia.

> > The

> > > > SPECT scan results were similar to those in syndrome X and

> could

> > > > affect such neurochemicals or neurohormones as acetylcholine

> and

> > > > > serotonin. This new discovery showed that the cells are

> > leaking

> > > > potassium and a lot of energy required to keep potassium in

the

> > > > cells is being expended by the patient. This may be the

reason

> > that

> > > > the

> > > > > heart muscle is not pumping as much as it should. Dr. Kenny

> De

> > > > Meirleir spoke on the RED diagnostic test that was being used

> to

> > > > detect the RNase L Dysfunction in PAC/MEs taking Ampligen.

This

> > is

> > > > not

> > > > > the technique used by Dr. Suhadolnik but, instead, is based

> on

> > > the

> > > > description given by Charachon et al (Biochemistry 29:2550-

> 2556,

> > > > 1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a

> > > > > disorder of the circulation. " From http://www.ncf-

> > > > net.org/forum/aacfsreview.htm

> > > > >

> > > > >

> > > > > Just found this citation while looking for other things:

> > > > >

> > > > > Inadequate vitamin D status: does it contribute to the

> > disorders

> > > > comprising syndrome 'X'? Boucher BJ.

> > > > >

> > > > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> > > >

> > cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=9624222 & query_hl=11

> > > > >

> > > > > A search on medline for:

> > > > > " syndrome X " [All Fields] AND " vitamin D " [All Fields]

> > > > > found some 6 more articles.