RE: Heart failure in ME/CFS, mitochondria, D-Ribose

[Guest guest]

Thanks, Honey:

Is D-ribose commercially available?

Helen

> My private doctor, Dr Myhill who many of you in the UK may

> know is well-respected and has been treating people with M.E. for

> decades has added a page to her website which explains very neatly

> her views on the recent findings and opinions (Peckerman, Cheney)

> on heart failure in ME/CFS patients, and her work on what may be a

> solution in terms of dealing with the apparent mitochondrial

failure.

> I'd be extremely interested in others' opinions on this who will

> understand this better than me. Her article is also to me a very

> good summary of recent findings.

>

> Apologies if this has been mentioned before, but I see only

> two mentions to D-Ribose in the last 6 months or so on the

> health-related lists I'm on, with little response, and Dr Myhill's

> pretty excited about initial results. I know Dr Teitelbaum is also

> conducting a study with D-Ribose: online evidence seems to suggest

> he's most interested in results for FM patients.

>

> Dr Myhill's very happy for me to pass this information on (so I

should

> pass on her permission to repost) and although she has a long

waiting

> list for taking on patients, says her secretaries can help supply

> treatment, should anyone wish to try. I'll be starting this soon.

>

> http://www.drmyhill.co.uk/article.cfm?id=373

>

> Opinons?

>

> Some extracts:

>

> " CFS is Heart Failure Secondary to Mitochondrial Malfunction

>

> I think this is one of the most important handouts I have ever

> produced in terms of my understanding of CFS and what to do in order

> to recover! So please read this very carefully and several times

over

> because for many sufferers it contains the keys to unlock their

> illness!

>

> Two papers have come to my notice recently which make great sense of

> both my clinical observations and also the idea that CFS is a

symptom

> of mitochondrial failure. The two symptoms I am looking for in CFS

to

> make the diagnosis is firstly very poor stamina and secondly delayed

> fatigue. I think I can now explain these in terms of what is going

on

> inside cells and the effects on major organs of the body (primarily

> the heart). More importantly, there are major implications for a

test

> for CFS and of course management and recovery.

>

> If mitochondria (the little batteries found inside every cell in the

> body) do not work properly, then the energy supply to every cell in

> the body will be impaired. This includes the heart. Many of the

> symptoms of CFS could be explained by heart failure because the

heart

> muscle cannot work properly...

>

> ... Thanks to work by Dr Arnold Peckerman

> www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf we now

know

> that cardiac output in CFS patients is impaired...

>

> [Complementary descriptions to Cheney's discussions on organ

failure]

>

> ... So to summarise, the basic pathology in CFS is slow re-cycling

of

> ATP to ADP and back to ATP again. If patients push themselves and

> make more energy demands, then ADP is converted to AMP which cannot

> be recycled and it is this which is responsible for the delayed

> fatigue. This is because it takes the body several days to make

fresh

> ATP from new ingredients. When patients overdo things and �hit a

> brick wall� this is because they have no ATP or ADP to function at

> all...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers,

surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book " ¿½The Sinatra Solution " ¿½ produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers,

surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers,

surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers,

surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... In order to make new ATP, one needs a sugar, namely D-ribose.

> Normally the body can manufacture this for itself from glucose, but

> if energy levels are very low, then it may be unable to synthesise

> this essential sugar. So when the CFS sufferers push themselves too

> much, ADP is converted into AMP, which they cannot recycle. It

> normally takes a few days to make new ATP from D-ribose, but the CFS

> sufferers may be unable to make D-ribose...

>

> ... for those who do not get well, it is likely that there is some

> sort of metabolic defect which prevents them from manufacturing

> these essential ingredients. I call this metabolic dyslexia! It may

> well be that genetically poor mitochondrial function alone is the

> problem, or there may be toxins or pesticides stuck in the system

> which stop the mitochondria functioning properly. It may well be

> that once the patient has dropped below a certain critical level,

> all cellular processes are going so slow that the sufferer is unable

> to manufacture the very things required to restore health...

>

> ... [Dr Sinatra] recommends the following daily cocktail for CFS:

>

> Co-enzyme Q 10 300 � 360mg (the oil of the engine � moves

> electrons from one molecule to another) L-carnitine 2,000 �

3,000mg

> (the oil of the engine � moves ATP and ADP across mito membranes)

> D-ribose 15grams (raw material to make new ATP) Magnesium 400 �

> 800mg (the spark plugs � fires up many enzyme reactions)

>

> To this I would also add niacinamide 500mgs daily (the raw material

> to make NAD). I would expect this cocktail of supplements to work

> best taken together, not as individual supplements...

>

> ... How long before you see improvement? Not sure at the moment.

> However, heart transplant patients whose cardiac output is improved

> overnight can take up to a year before they start to feel fully well

> again. However, I would expect sufferers to see improvements after a

> few weeks of supplements.

>

> What is important is that these interventions are done in

combination

> with all my other recommendations with respect to diet,

> micronutrients, pacing, sleep, detoxing, etc. "

>

> Honey

>

>

>

>

>

[Guest guest]

Hi, Honey.

Thanks very much for posting Dr. Myhill's latest thinking. I've

corresponded with her in the past, and I think she has some

wonderful insights. She and Dr. Cheney seem to be thinking along

many of the same lines.

Rich

> My private doctor, Dr Myhill who many of you in the UK may

> know is well-respected and has been treating people with M.E. for

> decades has added a page to her website which explains very neatly

> her views on the recent findings and opinions (Peckerman, Cheney)

> on heart failure in ME/CFS patients, and her work on what may be a

> solution in terms of dealing with the apparent mitochondrial

failure.

> I'd be extremely interested in others' opinions on this who will

> understand this better than me. Her article is also to me a very

> good summary of recent findings.

>

> Apologies if this has been mentioned before, but I see only

> two mentions to D-Ribose in the last 6 months or so on the

> health-related lists I'm on, with little response, and Dr Myhill's

> pretty excited about initial results. I know Dr Teitelbaum is also

> conducting a study with D-Ribose: online evidence seems to suggest

> he's most interested in results for FM patients.

>

> Dr Myhill's very happy for me to pass this information on (so I

should

> pass on her permission to repost) and although she has a long

waiting

> list for taking on patients, says her secretaries can help supply

> treatment, should anyone wish to try. I'll be starting this soon.

>

> http://www.drmyhill.co.uk/article.cfm?id=373

[Guest guest]

Here's a source of d-ribose

_http://search.store./cgi-bin/nsearch?follow-pro=1 & vwcatalog=iherb & ca

talog=iherb & query=d-ribose_

(http://search.store./cgi-bin/nsearch?follow-pro=1 & vwcatalog=iherb & cata\

log=iherb & query=d-ribose)

Date: Wed, 17 Aug 2005 11:55:01 +0100 (BST)

From: cfs@...

Subject: Re: Re: Heart failure in ME/CFS, mitochondria, D-Ribose

On Wed, 17 Aug 2005, n Tait wrote:

> Thank you Honey for posting this. Awhile back I posted if anyone had tried

D

> ribose but got no replies so this is really intersting as both she and

> Titeilbaum are both trialing it. Think I will give it a go.

>

> n

Oh, it must have been your post I found, n! I'm glad someone

else is joining me in this. I'd be very keen to swap notes - feel

free to mail me off-list too if you want.

Honey

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

Hi Honey,

Does Dr Myhill follow on from this to suggest how disturbances occur in

the brain - perhaps by much the same mechanism?

Rosie

[mailto: ] On Behalf Of

cfs@...

Sent: 16 August 2005 22:36

Subject: Heart failure in ME/CFS, mitochondria,

D-Ribose

My private doctor, Dr Myhill who many of you in the UK may

know is well-respected and has been treating people with M.E. for

decades has added a page to her website which explains very neatly

her views on the recent findings and opinions (Peckerman, Cheney)

on heart failure in ME/CFS patients, and her work on what may be a

solution in terms of dealing with the apparent mitochondrial failure.

I'd be extremely interested in others' opinions on this who will

understand this better than me. Her article is also to me a very

good summary of recent findings.

Apologies if this has been mentioned before, but I see only

two mentions to D-Ribose in the last 6 months or so on the

health-related lists I'm on, with little response, and Dr Myhill's

pretty excited about initial results. I know Dr Teitelbaum is also

conducting a study with D-Ribose: online evidence seems to suggest

he's most interested in results for FM patients.

Dr Myhill's very happy for me to pass this information on (so I should

pass on her permission to repost) and although she has a long waiting

list for taking on patients, says her secretaries can help supply

treatment, should anyone wish to try. I'll be starting this soon.

http://www.drmyhill.co.uk/article.cfm?id=373

Opinons?

Some extracts:

" CFS is Heart Failure Secondary to Mitochondrial Malfunction

I think this is one of the most important handouts I have ever

produced in terms of my understanding of CFS and what to do in order

to recover! So please read this very carefully and several times over

because for many sufferers it contains the keys to unlock their

illness!

Two papers have come to my notice recently which make great sense of

both my clinical observations and also the idea that CFS is a symptom

of mitochondrial failure. The two symptoms I am looking for in CFS to

make the diagnosis is firstly very poor stamina and secondly delayed

fatigue. I think I can now explain these in terms of what is going on

inside cells and the effects on major organs of the body (primarily

the heart). More importantly, there are major implications for a test

for CFS and of course management and recovery.

If mitochondria (the little batteries found inside every cell in the

body) do not work properly, then the energy supply to every cell in

the body will be impaired. This includes the heart. Many of the

symptoms of CFS could be explained by heart failure because the heart

muscle cannot work properly...

.... Thanks to work by Dr Arnold Peckerman

www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf we now know

that cardiac output in CFS patients is impaired...

[Complementary descriptions to Cheney's discussions on organ failure]

.... So to summarise, the basic pathology in CFS is slow re-cycling of

ATP to ADP and back to ATP again. If patients push themselves and

make more energy demands, then ADP is converted to AMP which cannot

be recycled and it is this which is responsible for the delayed

fatigue. This is because it takes the body several days to make fresh

ATP from new ingredients. When patients overdo things and �hit a

brick wall� this is because they have no ATP or ADP to function at

all...

.... However, despite doing that, I am still left with a hard

core of patients that I still struggle with. This is where direct

micronutrient support for mitochondria may prove to be an extremely

useful intervention. I have learned what to do through reading a

book �The Sinatra Solution� produced by an American metabolic

cardiologist, Dr Sinatra, who has used these techniques for

treating patients with heart disease such as congestive cardiac

failure, angina, arrhythmias and so on. Sinatra worked initially

using entirely conventional techniques � drugs, pacemakers, surgery

or whatever. However, he realised that cardiac disease was not

all about poor blood supply to the heart. For many the problem was

heart muscle disease due to mitochondrial failure. Once he tackled

this aspect, patients made dramatic recoveries, were able to come

off medication, avoid surgery and return to their normal jobs and

sporting activities...

.... However, despite doing that, I am still left with a hard

core of patients that I still struggle with. This is where direct

micronutrient support for mitochondria may prove to be an extremely

useful intervention. I have learned what to do through reading a

book " ¿½The Sinatra Solution " ¿½ produced by an American metabolic

cardiologist, Dr Sinatra, who has used these techniques for

treating patients with heart disease such as congestive cardiac

failure, angina, arrhythmias and so on. Sinatra worked initially

using entirely conventional techniques � drugs, pacemakers, surgery

or whatever. However, he realised that cardiac disease was not

all about poor blood supply to the heart. For many the problem was

heart muscle disease due to mitochondrial failure. Once he tackled

this aspect, patients made dramatic recoveries, were able to come

off medication, avoid surgery and return to their normal jobs and

sporting activities...

.... However, despite doing that, I am still left with a hard

core of patients that I still struggle with. This is where direct

micronutrient support for mitochondria may prove to be an extremely

useful intervention. I have learned what to do through reading a

book �The Sinatra Solution� produced by an American metabolic

cardiologist, Dr Sinatra, who has used these techniques for

treating patients with heart disease such as congestive cardiac

failure, angina, arrhythmias and so on. Sinatra worked initially

using entirely conventional techniques � drugs, pacemakers, surgery

or whatever. However, he realised that cardiac disease was not

all about poor blood supply to the heart. For many the problem was

heart muscle disease due to mitochondrial failure. Once he tackled

this aspect, patients made dramatic recoveries, were able to come

off medication, avoid surgery and return to their normal jobs and

sporting activities...

.... However, despite doing that, I am still left with a hard

core of patients that I still struggle with. This is where direct

micronutrient support for mitochondria may prove to be an extremely

useful intervention. I have learned what to do through reading a

book �The Sinatra Solution� produced by an American metabolic

cardiologist, Dr Sinatra, who has used these techniques for

treating patients with heart disease such as congestive cardiac

failure, angina, arrhythmias and so on. Sinatra worked initially

using entirely conventional techniques � drugs, pacemakers, surgery

or whatever. However, he realised that cardiac disease was not

all about poor blood supply to the heart. For many the problem was

heart muscle disease due to mitochondrial failure. Once he tackled

this aspect, patients made dramatic recoveries, were able to come

off medication, avoid surgery and return to their normal jobs and

sporting activities...

.... In order to make new ATP, one needs a sugar, namely D-ribose.

Normally the body can manufacture this for itself from glucose, but

if energy levels are very low, then it may be unable to synthesise

this essential sugar. So when the CFS sufferers push themselves too

much, ADP is converted into AMP, which they cannot recycle. It

normally takes a few days to make new ATP from D-ribose, but the CFS

sufferers may be unable to make D-ribose...

.... for those who do not get well, it is likely that there is some

sort of metabolic defect which prevents them from manufacturing

these essential ingredients. I call this metabolic dyslexia! It may

well be that genetically poor mitochondrial function alone is the

problem, or there may be toxins or pesticides stuck in the system

which stop the mitochondria functioning properly. It may well be

that once the patient has dropped below a certain critical level,

all cellular processes are going so slow that the sufferer is unable

to manufacture the very things required to restore health...

.... [Dr Sinatra] recommends the following daily cocktail for CFS:

Co-enzyme Q 10 300 � 360mg (the oil of the engine � moves

electrons from one molecule to another) L-carnitine 2,000 � 3,000mg

(the oil of the engine � moves ATP and ADP across mito membranes)

D-ribose 15grams (raw material to make new ATP) Magnesium 400 �

800mg (the spark plugs � fires up many enzyme reactions)

To this I would also add niacinamide 500mgs daily (the raw material

to make NAD). I would expect this cocktail of supplements to work

best taken together, not as individual supplements...

.... How long before you see improvement? Not sure at the moment.

However, heart transplant patients whose cardiac output is improved

overnight can take up to a year before they start to feel fully well

again. However, I would expect sufferers to see improvements after a

few weeks of supplements.

What is important is that these interventions are done in combination

with all my other recommendations with respect to diet,

micronutrients, pacing, sleep, detoxing, etc. "

Honey

[Guest guest]

I believe so Helen - a quick Google implies it's a naturally

occurring five-carbon sugar, so you can buy over the counter. And

that it has no contraindications known. Plus, it apparently tastes

nice too..!

I think the only problem is the cost, and that's why she's buying it

in bulk.

Honey

On Wed, 17 Aug 2005, helen9jora wrote:

> Thanks, Honey:

>

> Is D-ribose commercially available?

>

> Helen

>

>

>

>> My private doctor, Dr Myhill who many of you in the UK may

>> know is well-respected and has been treating people with M.E. for

>> decades has added a page to her website which explains very neatly

>> her views on the recent findings and opinions (Peckerman, Cheney)

>> on heart failure in ME/CFS patients, and her work on what may be a

>> solution in terms of dealing with the apparent mitochondrial

> failure.

>> I'd be extremely interested in others' opinions on this who will

>> understand this better than me. Her article is also to me a very

>> good summary of recent findings.

>>

>> Apologies if this has been mentioned before, but I see only

>> two mentions to D-Ribose in the last 6 months or so on the

>> health-related lists I'm on, with little response, and Dr Myhill's

>> pretty excited about initial results. I know Dr Teitelbaum is also

>> conducting a study with D-Ribose: online evidence seems to suggest

>> he's most interested in results for FM patients.

>>

>> Dr Myhill's very happy for me to pass this information on (so I

> should

>> pass on her permission to repost) and although she has a long

> waiting

>> list for taking on patients, says her secretaries can help supply

>> treatment, should anyone wish to try. I'll be starting this soon.

>>

>> http://www.drmyhill.co.uk/article.cfm?id=373

>>

>> Opinons?

[Guest guest]

Thanks Rich - your opinion's valued, so this boosts my confidence.

I'm unsure how much of this article was informed by Cheney's

interpretation of Peckerman's work, and if 's step forward to

suggestion the mechanism for mitochondrial failure has been suggested

elsewhere?

I'll try and pass on how I get on with this - still have a nasty

parasite to kill.

Honey

On Wed, 17 Aug 2005, rvankonynen wrote:

> Hi, Honey.

>

> Thanks very much for posting Dr. Myhill's latest thinking. I've

> corresponded with her in the past, and I think she has some

> wonderful insights. She and Dr. Cheney seem to be thinking along

> many of the same lines.

>

> Rich

>

>

>> My private doctor, Dr Myhill who many of you in the UK may

>> know is well-respected and has been treating people with M.E. for

>> decades has added a page to her website which explains very neatly

>> her views on the recent findings and opinions (Peckerman, Cheney)

>> on heart failure in ME/CFS patients, and her work on what may be a

>> solution in terms of dealing with the apparent mitochondrial

> failure.

>> I'd be extremely interested in others' opinions on this who will

>> understand this better than me. Her article is also to me a very

>> good summary of recent findings.

>>

>> Apologies if this has been mentioned before, but I see only

>> two mentions to D-Ribose in the last 6 months or so on the

>> health-related lists I'm on, with little response, and Dr Myhill's

>> pretty excited about initial results. I know Dr Teitelbaum is also

>> conducting a study with D-Ribose: online evidence seems to suggest

>> he's most interested in results for FM patients.

>>

>> Dr Myhill's very happy for me to pass this information on (so I

> should

>> pass on her permission to repost) and although she has a long

> waiting

>> list for taking on patients, says her secretaries can help supply

>> treatment, should anyone wish to try. I'll be starting this soon.

>>

>> http://www.drmyhill.co.uk/article.cfm?id=373

[Guest guest]

Hi Rosie,

I think in a similar way to how Cheney explains it, yes: as the body

progressively shuts down organs to protect us from heart failure.

In order: skin (temperature control etc.), muscles (ache), liver/gut,

then brain. To quote from the article:

" 4. Effects on the Brain. Last October I attended a conference

sponsored by the late Dr . A Canadian physician Byron

Hyde showed us some functional scans of the brains of CFS patients.

If I had not known the diagnosis, I would have diagnosed strokes.

This is because the blood supply to some area of the brain was so

impaired. The default is temporary and with rest, blood supply

recovers. However, this explains the multiplicity of brain symptoms

suffered from, such as poor short term memory, difficulty

multi-tasking, slow mental processing and so on. Furthermore brain

cells are not particularly well stocked with mitochondria and

therefore they run out of energy very quickly. "

Honey

On Wed, 17 Aug 2005, Rosie wrote:

> Hi Honey,

>

> Does Dr Myhill follow on from this to suggest how disturbances occur in

> the brain - perhaps by much the same mechanism?

>

> Rosie

>

>

>

> [mailto: ] On Behalf Of

> cfs@...

> Sent: 16 August 2005 22:36

>

> Subject: Heart failure in ME/CFS, mitochondria,

> D-Ribose

>

> My private doctor, Dr Myhill who many of you in the UK may

> know is well-respected and has been treating people with M.E. for

> decades has added a page to her website which explains very neatly

> her views on the recent findings and opinions (Peckerman, Cheney)

> on heart failure in ME/CFS patients, and her work on what may be a

> solution in terms of dealing with the apparent mitochondrial failure.

> I'd be extremely interested in others' opinions on this who will

> understand this better than me. Her article is also to me a very

> good summary of recent findings.

>

> Apologies if this has been mentioned before, but I see only

> two mentions to D-Ribose in the last 6 months or so on the

> health-related lists I'm on, with little response, and Dr Myhill's

> pretty excited about initial results. I know Dr Teitelbaum is also

> conducting a study with D-Ribose: online evidence seems to suggest

> he's most interested in results for FM patients.

>

> Dr Myhill's very happy for me to pass this information on (so I should

> pass on her permission to repost) and although she has a long waiting

> list for taking on patients, says her secretaries can help supply

> treatment, should anyone wish to try. I'll be starting this soon.

>

> http://www.drmyhill.co.uk/article.cfm?id=373

>

> Opinons?

>

> Some extracts:

>

> " CFS is Heart Failure Secondary to Mitochondrial Malfunction

>

> I think this is one of the most important handouts I have ever

> produced in terms of my understanding of CFS and what to do in order

> to recover! So please read this very carefully and several times over

> because for many sufferers it contains the keys to unlock their

> illness!

>

> Two papers have come to my notice recently which make great sense of

> both my clinical observations and also the idea that CFS is a symptom

> of mitochondrial failure. The two symptoms I am looking for in CFS to

> make the diagnosis is firstly very poor stamina and secondly delayed

> fatigue. I think I can now explain these in terms of what is going on

> inside cells and the effects on major organs of the body (primarily

> the heart). More importantly, there are major implications for a test

> for CFS and of course management and recovery.

>

> If mitochondria (the little batteries found inside every cell in the

> body) do not work properly, then the energy supply to every cell in

> the body will be impaired. This includes the heart. Many of the

> symptoms of CFS could be explained by heart failure because the heart

> muscle cannot work properly...

>

> ... Thanks to work by Dr Arnold Peckerman

> www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf we now know

> that cardiac output in CFS patients is impaired...

>

> [Complementary descriptions to Cheney's discussions on organ failure]

>

> ... So to summarise, the basic pathology in CFS is slow re-cycling of

> ATP to ADP and back to ATP again. If patients push themselves and

> make more energy demands, then ADP is converted to AMP which cannot

> be recycled and it is this which is responsible for the delayed

> fatigue. This is because it takes the body several days to make fresh

> ATP from new ingredients. When patients overdo things and �hit a

> brick wall� this is because they have no ATP or ADP to function at

> all...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book " ¿½The Sinatra Solution " ¿½ produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... In order to make new ATP, one needs a sugar, namely D-ribose.

> Normally the body can manufacture this for itself from glucose, but

> if energy levels are very low, then it may be unable to synthesise

> this essential sugar. So when the CFS sufferers push themselves too

> much, ADP is converted into AMP, which they cannot recycle. It

> normally takes a few days to make new ATP from D-ribose, but the CFS

> sufferers may be unable to make D-ribose...

>

> ... for those who do not get well, it is likely that there is some

> sort of metabolic defect which prevents them from manufacturing

> these essential ingredients. I call this metabolic dyslexia! It may

> well be that genetically poor mitochondrial function alone is the

> problem, or there may be toxins or pesticides stuck in the system

> which stop the mitochondria functioning properly. It may well be

> that once the patient has dropped below a certain critical level,

> all cellular processes are going so slow that the sufferer is unable

> to manufacture the very things required to restore health...

>

> ... [Dr Sinatra] recommends the following daily cocktail for CFS:

>

> Co-enzyme Q 10 300 � 360mg (the oil of the engine � moves

> electrons from one molecule to another) L-carnitine 2,000 � 3,000mg

> (the oil of the engine � moves ATP and ADP across mito membranes)

> D-ribose 15grams (raw material to make new ATP) Magnesium 400 �

> 800mg (the spark plugs � fires up many enzyme reactions)

>

> To this I would also add niacinamide 500mgs daily (the raw material

> to make NAD). I would expect this cocktail of supplements to work

> best taken together, not as individual supplements...

>

> ... How long before you see improvement? Not sure at the moment.

> However, heart transplant patients whose cardiac output is improved

> overnight can take up to a year before they start to feel fully well

> again. However, I would expect sufferers to see improvements after a

> few weeks of supplements.

>

> What is important is that these interventions are done in combination

> with all my other recommendations with respect to diet,

> micronutrients, pacing, sleep, detoxing, etc. "

>

> Honey

>

>

>

>

>

[Guest guest]

Thank you Honey for posting this. Awhile back I posted if anyone had tried D

ribose but got no replies so this is really intersting as both she and

Titeilbaum are both trialing it. Think I will give it a go.

n

[Guest guest]

On Wed, 17 Aug 2005, n Tait wrote:

> Thank you Honey for posting this. Awhile back I posted if anyone had tried D

> ribose but got no replies so this is really intersting as both she and

> Titeilbaum are both trialing it. Think I will give it a go.

>

> n

Oh, it must have been your post I found, n! I'm glad someone

else is joining me in this. I'd be very keen to swap notes - feel

free to mail me off-list too if you want.

Honey

[Guest guest]

Hi Honey,

Thanks for this. As I'm seeing DR Myhill in October it's good to get as

much knowledge together in advance of seeing her in order to make the

appointment as fruitful as possible. I assume you have been getting

along with her basic protocol? How is that going and has any one thing

particularly helped any one symptom?

Rosie (Cardiff)

Heart failure in ME/CFS, mitochondria,

> D-Ribose

>

> My private doctor, Dr Myhill who many of you in the UK may

> know is well-respected and has been treating people with M.E. for

> decades has added a page to her website which explains very neatly

> her views on the recent findings and opinions (Peckerman, Cheney)

> on heart failure in ME/CFS patients, and her work on what may be a

> solution in terms of dealing with the apparent mitochondrial failure.

> I'd be extremely interested in others' opinions on this who will

> understand this better than me. Her article is also to me a very

> good summary of recent findings.

>

> Apologies if this has been mentioned before, but I see only

> two mentions to D-Ribose in the last 6 months or so on the

> health-related lists I'm on, with little response, and Dr Myhill's

> pretty excited about initial results. I know Dr Teitelbaum is also

> conducting a study with D-Ribose: online evidence seems to suggest

> he's most interested in results for FM patients.

>

> Dr Myhill's very happy for me to pass this information on (so I should

> pass on her permission to repost) and although she has a long waiting

> list for taking on patients, says her secretaries can help supply

> treatment, should anyone wish to try. I'll be starting this soon.

>

> http://www.drmyhill.co.uk/article.cfm?id=373

>

> Opinons?

>

> Some extracts:

>

> " CFS is Heart Failure Secondary to Mitochondrial Malfunction

>

> I think this is one of the most important handouts I have ever

> produced in terms of my understanding of CFS and what to do in order

> to recover! So please read this very carefully and several times over

> because for many sufferers it contains the keys to unlock their

> illness!

>

> Two papers have come to my notice recently which make great sense of

> both my clinical observations and also the idea that CFS is a symptom

> of mitochondrial failure. The two symptoms I am looking for in CFS to

> make the diagnosis is firstly very poor stamina and secondly delayed

> fatigue. I think I can now explain these in terms of what is going on

> inside cells and the effects on major organs of the body (primarily

> the heart). More importantly, there are major implications for a test

> for CFS and of course management and recovery.

>

> If mitochondria (the little batteries found inside every cell in the

> body) do not work properly, then the energy supply to every cell in

> the body will be impaired. This includes the heart. Many of the

> symptoms of CFS could be explained by heart failure because the heart

> muscle cannot work properly...

>

> ... Thanks to work by Dr Arnold Peckerman

> www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf we now know

> that cardiac output in CFS patients is impaired...

>

> [Complementary descriptions to Cheney's discussions on organ failure]

>

> ... So to summarise, the basic pathology in CFS is slow re-cycling of

> ATP to ADP and back to ATP again. If patients push themselves and

> make more energy demands, then ADP is converted to AMP which cannot

> be recycled and it is this which is responsible for the delayed

> fatigue. This is because it takes the body several days to make fresh

> ATP from new ingredients. When patients overdo things and �hit a

> brick wall� this is because they have no ATP or ADP to function at

> all...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book " ¿½The Sinatra Solution " ¿½ produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... However, despite doing that, I am still left with a hard

> core of patients that I still struggle with. This is where direct

> micronutrient support for mitochondria may prove to be an extremely

> useful intervention. I have learned what to do through reading a

> book �The Sinatra Solution� produced by an American metabolic

> cardiologist, Dr Sinatra, who has used these techniques for

> treating patients with heart disease such as congestive cardiac

> failure, angina, arrhythmias and so on. Sinatra worked initially

> using entirely conventional techniques � drugs, pacemakers, surgery

> or whatever. However, he realised that cardiac disease was not

> all about poor blood supply to the heart. For many the problem was

> heart muscle disease due to mitochondrial failure. Once he tackled

> this aspect, patients made dramatic recoveries, were able to come

> off medication, avoid surgery and return to their normal jobs and

> sporting activities...

>

> ... In order to make new ATP, one needs a sugar, namely D-ribose.

> Normally the body can manufacture this for itself from glucose, but

> if energy levels are very low, then it may be unable to synthesise

> this essential sugar. So when the CFS sufferers push themselves too

> much, ADP is converted into AMP, which they cannot recycle. It

> normally takes a few days to make new ATP from D-ribose, but the CFS

> sufferers may be unable to make D-ribose...

>

> ... for those who do not get well, it is likely that there is some

> sort of metabolic defect which prevents them from manufacturing

> these essential ingredients. I call this metabolic dyslexia! It may

> well be that genetically poor mitochondrial function alone is the

> problem, or there may be toxins or pesticides stuck in the system

> which stop the mitochondria functioning properly. It may well be

> that once the patient has dropped below a certain critical level,

> all cellular processes are going so slow that the sufferer is unable

> to manufacture the very things required to restore health...

>

> ... [Dr Sinatra] recommends the following daily cocktail for CFS:

>

> Co-enzyme Q 10 300 � 360mg (the oil of the engine � moves

> electrons from one molecule to another) L-carnitine 2,000 � 3,000mg

> (the oil of the engine � moves ATP and ADP across mito membranes)

> D-ribose 15grams (raw material to make new ATP) Magnesium 400 �

> 800mg (the spark plugs � fires up many enzyme reactions)

>

> To this I would also add niacinamide 500mgs daily (the raw material

> to make NAD). I would expect this cocktail of supplements to work

> best taken together, not as individual supplements...

>

> ... How long before you see improvement? Not sure at the moment.

> However, heart transplant patients whose cardiac output is improved

> overnight can take up to a year before they start to feel fully well

> again. However, I would expect sufferers to see improvements after a

> few weeks of supplements.

>

> What is important is that these interventions are done in combination

> with all my other recommendations with respect to diet,

> micronutrients, pacing, sleep, detoxing, etc. "

>

> Honey

>

>

>

>

>

[Guest guest]

On Wed, 17 Aug 2005, Rosie wrote:

> Hi Honey,

>

> Thanks for this. As I'm seeing DR Myhill in October it's good to get as

> much knowledge together in advance of seeing her in order to make the

> appointment as fruitful as possible. I assume you have been getting

> along with her basic protocol? How is that going and has any one thing

> particularly helped any one symptom?

>

> Rosie (Cardiff)

Rosie,

The honest answer is no. But I contacted her and signed up after

12 years of ME in the midst of the biggest relapse by far of my

life (currently bedbound, previously stumbled through in my job).

I've since been getting iller and iller, and so far, nothing's making

things better. Sorry this isn't so encouraging, but you may find the

opposite - my dive to ill-health is I'm sure the result of some hidden

factor, possibly a parasitic infection (Blastocystis Hominis) which

I discovered via Myhill, and with no help from the NHS, and am

trying to treat now.

I'm on a pretty strict diet from , which is what I imagine she'll

put you on, plus strict instructions about sleep and vitamins/minerals.

Unfortunately, my sleep's a disaster after trying everything still,

so there's something nasty at work. Having gone from sugar addict to

losing 1/3rd of my body weight in under a year, I'm sure this is more

than just the diet.

I'm sorry to not be more encouraging, but I'm also sure 's done

a lot of good for a lot of people, and I intend to stick with her.

Her attitude is great, her knowledge widespread and she doesn't hold

back her views - she's also very supportive for writing letters etc.

The only problem is that she's so hard-working she's hard to get hold

of, and her secretaries are very very busy right now.

I don't know honestly if this helps, but it's where I am just now...

Honey

[Guest guest]

Just to emphasise my original post: Dr Myhill said she can supply

D-Ribose also to non-patients having bought it bulk, so it may

well be significantly cheaper. I haven't looked at costs yet, so

just for info.

Honey

On Wed, 17 Aug 2005, foxhillers@... wrote:

>

> Here's a source of d-ribose

>

> _http://search.store./cgi-bin/nsearch?follow-pro=1 & vwcatalog=iherb & ca

> talog=iherb & query=d-ribose_

>

(http://search.store./cgi-bin/nsearch?follow-pro=1 & vwcatalog=iherb & cata\

log=iherb & query=d-ribose)

>

>

> Date: Wed, 17 Aug 2005 11:55:01 +0100 (BST)

> From: cfs@...

> Subject: Re: Re: Heart failure in ME/CFS, mitochondria, D-Ribose

>

> On Wed, 17 Aug 2005, n Tait wrote:

>

>> Thank you Honey for posting this. Awhile back I posted if anyone had tried

> D

>> ribose but got no replies so this is really intersting as both she and

>> Titeilbaum are both trialing it. Think I will give it a go.

>>

>> n

>

> Oh, it must have been your post I found, n! I'm glad someone

> else is joining me in this. I'd be very keen to swap notes - feel

> free to mail me off-list too if you want.

>

> Honey

[Guest guest]

Hi Honey,

Sorry things are so bad right now. It's interesting that she has found

things that the NHS hasn't (though not surprising!) Did she screen you

for Lyme/Borrelia?

Rosie

Subject: RE: Heart failure in ME/CFS, mitochondria,

D-Ribose

On Wed, 17 Aug 2005, Rosie wrote:

> Hi Honey,

>

> Thanks for this. As I'm seeing DR Myhill in October it's good to get

as

> much knowledge together in advance of seeing her in order to make the

> appointment as fruitful as possible. I assume you have been getting

> along with her basic protocol? How is that going and has any one

thing

> particularly helped any one symptom?

>

> Rosie (Cardiff)

Rosie,

The honest answer is no. But I contacted her and signed up after

12 years of ME in the midst of the biggest relapse by far of my

life (currently bedbound, previously stumbled through in my job).

I've since been getting iller and iller, and so far, nothing's making

things better. Sorry this isn't so encouraging, but you may find the

opposite - my dive to ill-health is I'm sure the result of some hidden

factor, possibly a parasitic infection (Blastocystis Hominis) which

I discovered via Myhill, and with no help from the NHS, and am

trying to treat now.

I'm on a pretty strict diet from , which is what I imagine she'll

put you on, plus strict instructions about sleep and vitamins/minerals.

Unfortunately, my sleep's a disaster after trying everything still,

so there's something nasty at work. Having gone from sugar addict to

losing 1/3rd of my body weight in under a year, I'm sure this is more

than just the diet.

I'm sorry to not be more encouraging, but I'm also sure 's done

a lot of good for a lot of people, and I intend to stick with her.

Her attitude is great, her knowledge widespread and she doesn't hold

back her views - she's also very supportive for writing letters etc.

The only problem is that she's so hard-working she's hard to get hold

of, and her secretaries are very very busy right now.

I don't know honestly if this helps, but it's where I am just now...

Honey

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

[Guest guest]

On Wed, 17 Aug 2005, Rosie wrote:

> Hi Honey,

>

> Sorry things are so bad right now. It's interesting that she has found

> things that the NHS hasn't (though not surprising!) Did she screen you

> for Lyme/Borrelia?

>

> Rosie

No actually Rosie - she's keener on mitochondria issues with ME/CFS

and nutrition than Lyme/Borrelia, at least for now. I'm sure she'd be

happy to approve and facilitate a specific test if I wanted to, but

I'm still unsure - so many avenues to pursue, and so little energy.

I have a huge list of possible tests I could do at much expense!

What to do next... let's see... glutathione? NAD? Co Q?...

Everything comes up normal for me, including red cell magnesium,

adrenals... and yet I'm so much iller.

I get the impression that even if the NHS-approved test labs

find my parasite, they may ignore it - or the GP would - as it's

considered non-symptomatic in anything but AIDS patients and other

immuno-compromised people. And we aren't *really* ill are we? We just

have M.E.! Many many people don't agree with this conventional wisdom,

but the NHS often has very deaf ears...

Honey

[Guest guest]

Yup, it tastes nice!

I'm not sure how it combines with an anti-candida diet though...

Phil

> >> My private doctor, Dr Myhill who many of you in the UK may

> >> know is well-respected and has been treating people with M.E.

for

> >> decades has added a page to her website which explains very

neatly

> >> her views on the recent findings and opinions (Peckerman,

Cheney)

> >> on heart failure in ME/CFS patients, and her work on what may

be a

> >> solution in terms of dealing with the apparent mitochondrial

> > failure.

> >> I'd be extremely interested in others' opinions on this who will

> >> understand this better than me. Her article is also to me a

very

> >> good summary of recent findings.

> >>

> >> Apologies if this has been mentioned before, but I see only

> >> two mentions to D-Ribose in the last 6 months or so on the

> >> health-related lists I'm on, with little response, and Dr

Myhill's

> >> pretty excited about initial results. I know Dr Teitelbaum is

also

> >> conducting a study with D-Ribose: online evidence seems to

suggest

> >> he's most interested in results for FM patients.

> >>

> >> Dr Myhill's very happy for me to pass this information on (so I

> > should

> >> pass on her permission to repost) and although she has a long

> > waiting

> >> list for taking on patients, says her secretaries can help

supply

> >> treatment, should anyone wish to try. I'll be starting this

soon.

> >>

> >> http://www.drmyhill.co.uk/article.cfm?id=373

> >>

> >> Opinons?

[Guest guest]

Part of the " problem " with Dr M is her success.

The gargantuan void left my our fifth rate, dunderheaded health

service has created huge demand for any ME friendly doc. Also, she

(ironically) now has a job at a fatigue unit at the Royal

Shrewsbury. Personally I think she's great because she has the

courage of her convictions, and unlike every other GP I've met, she

has intellectual curiosity.

Phil

>

> > Hi Honey,

> >

> > Thanks for this. As I'm seeing DR Myhill in October it's good

to get as

> > much knowledge together in advance of seeing her in order to

make the

> > appointment as fruitful as possible. I assume you have been

getting

> > along with her basic protocol? How is that going and has any

one thing

> > particularly helped any one symptom?

> >

> > Rosie (Cardiff)

>

> Rosie,

>

> The honest answer is no. But I contacted her and signed up after

> 12 years of ME in the midst of the biggest relapse by far of my

> life (currently bedbound, previously stumbled through in my job).

> I've since been getting iller and iller, and so far, nothing's

making

> things better. Sorry this isn't so encouraging, but you may find

the

> opposite - my dive to ill-health is I'm sure the result of some

hidden

> factor, possibly a parasitic infection (Blastocystis Hominis) which

> I discovered via Myhill, and with no help from the NHS, and

am

> trying to treat now.

>

> I'm on a pretty strict diet from , which is what I imagine

she'll

> put you on, plus strict instructions about sleep and

vitamins/minerals.

> Unfortunately, my sleep's a disaster after trying everything still,

> so there's something nasty at work. Having gone from sugar addict

to

> losing 1/3rd of my body weight in under a year, I'm sure this is

more

> than just the diet.

>

> I'm sorry to not be more encouraging, but I'm also sure 's

done

> a lot of good for a lot of people, and I intend to stick with her.

> Her attitude is great, her knowledge widespread and she doesn't

hold

> back her views - she's also very supportive for writing letters

etc.

> The only problem is that she's so hard-working she's hard to get

hold

> of, and her secretaries are very very busy right now.

>

> I don't know honestly if this helps, but it's where I am just

now...

> Honey

[Guest guest]

On Wed, 17 Aug 2005, swiss_phill wrote:

> Personally I think she's great because she has the

> courage of her convictions, and unlike every other GP I've met, she

> has intellectual curiosity.

Very good point! You put your finger on why I like her manner: she's

actually intellectually *engaged* with M.E. as a technical problem

seeking a solution. I don't mind her seeing me as a jigsaw as long

as she's prepared to do more than the corner pieces, like most GPs

do.

Talk about stretching an analogy too far.

>

>> I believe so Helen - a quick Google implies it's a naturally

>> occurring five-carbon sugar, so you can buy over the counter. And

>> that it has no contraindications known. Plus, it apparently tastes

>> nice too..!

>

> Yup, it tastes nice!

Oh, wait, you've taken it? I haven't found anyone who has

specifically for ME/CFS or FM yet. Did it help, or did you just get

started on it via Dr Myhill?

> I'm not sure how it combines with an anti-candida diet though...

Hmm, worrying. I'm on a massively no-sugar diet to not feed my

supposedly dying parasite, Blastocystis Hominis, and worry a bit

about D-Ribose being technically a sugar and feeding it. I forgot to

ask her about this. Anyone have a clue?

Honey

[Guest guest]

Hi Honey,

Yes I agree the NHS has provided me in real terms, with

precisely........ nothing!

Rosie

Ribose

On Wed, 17 Aug 2005, Rosie wrote:

> Hi Honey,

>

> Sorry things are so bad right now. It's interesting that she has

found

> things that the NHS hasn't (though not surprising!) Did she screen

you

> for Lyme/Borrelia?

>

> Rosie

No actually Rosie - she's keener on mitochondria issues with ME/CFS

and nutrition than Lyme/Borrelia, at least for now. I'm sure she'd be

happy to approve and facilitate a specific test if I wanted to, but

I'm still unsure - so many avenues to pursue, and so little energy.

I have a huge list of possible tests I could do at much expense!

What to do next... let's see... glutathione? NAD? Co Q?...

Everything comes up normal for me, including red cell magnesium,

adrenals... and yet I'm so much iller.

I get the impression that even if the NHS-approved test labs

find my parasite, they may ignore it - or the GP would - as it's

considered non-symptomatic in anything but AIDS patients and other

immuno-compromised people. And we aren't *really* ill are we? We just

have M.E.! Many many people don't agree with this conventional wisdom,

but the NHS often has very deaf ears...

Honey

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

[Guest guest]

Hi,

I've just started the D-ribose this week. I had a call from Hania

this morning to say that the tests (for mitocondria etc) came back

positive, so I don't think I've jumped the gun by starting now. Off

the top of my head I'm not sure how long it takes to do anything,

but I suspect its weeks, if not months.

Regarding the candida aspect, this is pure guess-work on my part.

I've had two 6 week courses of doxycycline, which I think have

buggered my digestion by upsetting the bacterial balance in my gut.

I stopped taking the Doxy on saturday and started taking a pro-

biotic, and my digestion is now pain-free. However, my energy levels

are worsening....!? Why!?

Phil

> >> I believe so Helen - a quick Google implies it's a naturally

> >> occurring five-carbon sugar, so you can buy over the counter.

And

> >> that it has no contraindications known. Plus, it apparently

tastes

> >> nice too..!

> >

> > Yup, it tastes nice!

>

> Oh, wait, you've taken it? I haven't found anyone who has

> specifically for ME/CFS or FM yet. Did it help, or did you just

get

> started on it via Dr Myhill?

>

> > I'm not sure how it combines with an anti-candida diet though...

>

> Hmm, worrying. I'm on a massively no-sugar diet to not feed my

> supposedly dying parasite, Blastocystis Hominis, and worry a bit

> about D-Ribose being technically a sugar and feeding it. I forgot

to

> ask her about this. Anyone have a clue?

>

> Honey

[Guest guest]

Hi Phil,

It just could be that you have something like borrelia that responds

positively to antibiotics?

Out of interest, can you tell me all the tests DR M has done? It makes

a change for things to come back positive doesn't it? Knowing my luck

everything will come back normal and she'll be even more stumped!

Rosie

Heart failure in ME/CFS, mitochondria, D-Ribose

Hi,

I've just started the D-ribose this week. I had a call from Hania

this morning to say that the tests (for mitocondria etc) came back

positive, so I don't think I've jumped the gun by starting now. Off

the top of my head I'm not sure how long it takes to do anything,

but I suspect its weeks, if not months.

Regarding the candida aspect, this is pure guess-work on my part.

I've had two 6 week courses of doxycycline, which I think have

buggered my digestion by upsetting the bacterial balance in my gut.

I stopped taking the Doxy on saturday and started taking a pro-

biotic, and my digestion is now pain-free. However, my energy levels

are worsening....!? Why!?

Phil

> >> I believe so Helen - a quick Google implies it's a naturally

> >> occurring five-carbon sugar, so you can buy over the counter.

And

> >> that it has no contraindications known. Plus, it apparently

tastes

> >> nice too..!

> >

> > Yup, it tastes nice!

>

> Oh, wait, you've taken it? I haven't found anyone who has

> specifically for ME/CFS or FM yet. Did it help, or did you just

get

> started on it via Dr Myhill?

>

> > I'm not sure how it combines with an anti-candida diet though...

>

> Hmm, worrying. I'm on a massively no-sugar diet to not feed my

> supposedly dying parasite, Blastocystis Hominis, and worry a bit

> about D-Ribose being technically a sugar and feeding it. I forgot

to

> ask her about this. Anyone have a clue?

>

> Honey

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

[Guest guest]

Rosie,

Remind me in a few days - then I'll have the printout from the

latest results in front of me - I'm going to be emailing them to one

or two others as well. I can say though from memory that the last

tests showed very low mag and poor adrenal function (which of course

my GP ignored).

Phil

Why is life so complicated!? Oh no, its not - its just ME.

> > >> I believe so Helen - a quick Google implies it's a naturally

> > >> occurring five-carbon sugar, so you can buy over the

counter.

> And

> > >> that it has no contraindications known. Plus, it apparently

> tastes

> > >> nice too..!

> > >

> > > Yup, it tastes nice!

> >

> > Oh, wait, you've taken it? I haven't found anyone who has

> > specifically for ME/CFS or FM yet. Did it help, or did you just

> get

> > started on it via Dr Myhill?

> >

> > > I'm not sure how it combines with an anti-candida diet

though...

> >

> > Hmm, worrying. I'm on a massively no-sugar diet to not feed my

> > supposedly dying parasite, Blastocystis Hominis, and worry a bit

> > about D-Ribose being technically a sugar and feeding it. I

forgot

> to

> > ask her about this. Anyone have a clue?

> >

> > Honey

>

>

>

>

>

> This list is intended for patients to share personal experiences

with

> each other, not to give medical advice. If you are interested in

any

> treatment discussed here, please consult your doctor.

>

[Guest guest]

To be honest I was not impressed by this paper.

FIrst of all about half of her paper came right from Dr. Cheney - someone she

neglected, for some reason to mention. She didnt mind mentioning Dr. Peckerman

- who, being a cautious researcher, surely would not endorse such a sweeping

endorsement of heart failure in CFS.

I dont understand the difference between IC and echocardiogram in diagnosing

cardiomyopathy. She says you cannot diagnose cardiomyopathy using standard heart

tests. At this site, just one of many

http://heartdisease.upmc.com/cardiomyopathy/Diagnosis.htm

they state you use chest x-ray, echocardiogram, electrocardiogram to diagnose

cardiomyopathy.

She indicates there is a real distinction between cardiomyopathy and heart

failure due to heart attack. So far as I understand severe heart attacks so

injure the heart muscle that heart output is reduced - this leads to Ang II

production which stimulates sympathetic nervous system centers in the brain

which causes the blood vessels in the heart and elsewhere to constrict which

further cuts off blood flow to the heart. I assume that outcome of reduced

heart output in cardiomyopathy is the same. While the initiating factors may be

different the outcome is the same - heart muscle is injured enough that it

cannot pump enough blood.

Apparently either Dr. Myhill has not read Dr. Peckerman's article or she is

referring to something other than that when she states 'Q " is 'an extremely

accurate prediction of disability'. There is NOTHING in Pecekerman's paper

about disability - the segregation of CFS patients in that paper is between more

and less severe cases of CFS - based on more or less stringent definitions of

CFS. That hardly connotates with disability.

She says this means we have a test for CFS ????? If IC is a test for CFS then

half of the purported CFS patients in the test failed it since half of them had

normal cardiac output.

I would guess virtually everyone who has CFS has had thyroid tests. One would

think that if hypothyroidism was a problem in CFS someone would have noticed by

now.

If the lack of sweating resutled in mitochondrial difficulties then the almost

wholly sedentary half of the population of the US would have CFS. While I'm

sure some with CFS have problems sweating I certainly dont, nor has this problem

recieved any real attention - I assume it doesnt exist to a large extent.

Several studies have examined lactic acid accumulations in CFS patients; the

consensus now is that it is not widespread in CFS, that if it exists at all, it

exists in a minority of CFS patients.

I really question the credibility any CFS doctor who says something like 'the

vast majority of patients I see get WELL with my standard work'.

cfs@... wrote:

On Wed, 17 Aug 2005, swiss_phill wrote:

> Personally I think she's great because she has the

> courage of her convictions, and unlike every other GP I've met, she

> has intellectual curiosity.

Very good point! You put your finger on why I like her manner: she's

actually intellectually *engaged* with M.E. as a technical problem

seeking a solution. I don't mind her seeing me as a jigsaw as long

as she's prepared to do more than the corner pieces, like most GPs

do.

Talk about stretching an analogy too far.

>

>> I believe so Helen - a quick Google implies it's a naturally

>> occurring five-carbon sugar, so you can buy over the counter. And

>> that it has no contraindications known. Plus, it apparently tastes

>> nice too..!

>

> Yup, it tastes nice!

Oh, wait, you've taken it? I haven't found anyone who has

specifically for ME/CFS or FM yet. Did it help, or did you just get

started on it via Dr Myhill?

> I'm not sure how it combines with an anti-candida diet though...

Hmm, worrying. I'm on a massively no-sugar diet to not feed my

supposedly dying parasite, Blastocystis Hominis, and worry a bit

about D-Ribose being technically a sugar and feeding it. I forgot to

ask her about this. Anyone have a clue?

Honey

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Hi,

Having seen Dr Myhill two weeks ago, I mentioned Cheney to her, as I

had read some of his work. She simply hadn't heard of him. This did

surprise me, but the person whose work she was most excited about

was Sinatra (as mentioned in her article) rather than Peckerman. I

think she is still figuring out exactly how heart failure might fit

into the CFS jigsaw. She can only speculate at the moment what

causes the mitochondrial failure in the first place (infection being

a prime candidate). As I see it it is the mitochondrial failure that

is of prime importance, and the cause of, rather than the result of

things like sweating problems.

It is also worth pointing out that here in the UK thyroid problems

are poorly understood (because medicine here is not well practised,

so what isn't in black and white is simply dismissed - pity the poor

dim-witted GP...) and rarely diagnosed. Few of the CFS people I know

here have been tested for it, although it is worth noting that one

of the people I know who was initially diagnosed with CFS and

recovered, did so when Dr Myhill found she had a thyroid problem.

I do wish I had a scientific background so that I could better

understand the issues involved. I think it is right to question

things from any source, just don't forget that Dr Myhill is one of

very few doctors in the UK who have any understanding of what CFS/ME

is. I don't know how things are in other countries, but we're still

fighting the prejudice that CFS/ME is " all in the mind " , so ANY work

on the physical side is worth its weight in gold.

Phil

> >> I believe so Helen - a quick Google implies it's a naturally

> >> occurring five-carbon sugar, so you can buy over the counter.

And

> >> that it has no contraindications known. Plus, it apparently

tastes

> >> nice too..!

> >

> > Yup, it tastes nice!

>

> Oh, wait, you've taken it? I haven't found anyone who has

> specifically for ME/CFS or FM yet. Did it help, or did you just

get

> started on it via Dr Myhill?

>

> > I'm not sure how it combines with an anti-candida diet though...

>

> Hmm, worrying. I'm on a massively no-sugar diet to not feed my

> supposedly dying parasite, Blastocystis Hominis, and worry a bit

> about D-Ribose being technically a sugar and feeding it. I forgot

to

> ask her about this. Anyone have a clue?

>

> Honey

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

>

>

>

[Guest guest]

If you froogle it, there are multiple sources-including iherb, I think

Adrienne

Re: Re: Heart failure in ME/CFS, mitochondria, D-Ribose

On Wed, 17 Aug 2005, n Tait wrote:

> Thank you Honey for posting this. Awhile back I posted if anyone had tried

D

> ribose but got no replies so this is really intersting as both she and

> Titeilbaum are both trialing it. Think I will give it a go.

>

> n

Oh, it must have been your post I found, n! I'm glad someone

else is joining me in this. I'd be very keen to swap notes - feel

free to mail me off-list too if you want.

Honey

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

Honey, can you tell us more about the diet? I finally got off sugar a few months

ago and really feel some good improvement. Would like more hints or clues.

Adrienne

RE: Heart failure in ME/CFS, mitochondria,

D-Ribose

On Wed, 17 Aug 2005, Rosie wrote:

> Hi Honey,

>

> Thanks for this. As I'm seeing DR Myhill in October it's good to get as

> much knowledge together in advance of seeing her in order to make the

> appointment as fruitful as possible. I assume you have been getting

> along with her basic protocol? How is that going and has any one thing

> particularly helped any one symptom?

>

> Rosie (Cardiff)

Rosie,

The honest answer is no. But I contacted her and signed up after

12 years of ME in the midst of the biggest relapse by far of my

life (currently bedbound, previously stumbled through in my job).

I've since been getting iller and iller, and so far, nothing's making

things better. Sorry this isn't so encouraging, but you may find the

opposite - my dive to ill-health is I'm sure the result of some hidden

factor, possibly a parasitic infection (Blastocystis Hominis) which

I discovered via Myhill, and with no help from the NHS, and am

trying to treat now.

I'm on a pretty strict diet from , which is what I imagine she'll

put you on, plus strict instructions about sleep and vitamins/minerals.

Unfortunately, my sleep's a disaster after trying everything still,

so there's something nasty at work. Having gone from sugar addict to

losing 1/3rd of my body weight in under a year, I'm sure this is more

than just the diet.

I'm sorry to not be more encouraging, but I'm also sure 's done

a lot of good for a lot of people, and I intend to stick with her.

Her attitude is great, her knowledge widespread and she doesn't hold

back her views - she's also very supportive for writing letters etc.

The only problem is that she's so hard-working she's hard to get hold

of, and her secretaries are very very busy right now.

I don't know honestly if this helps, but it's where I am just now...

Honey

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.