RE: Re Model for CFS primary factors

[Guest guest]

HI ,

I hope that some of the other more educate people will respond to your post, but

I did want to point you to a resource in the meantime. I am being treated at a

place here in the US called the fibro and fatigue center. They believe that the

mitochondria is one of the key issues. There is a lot information regarding

that at their website, you just need to hunt around a little.

www.fibroandfatigue.com If you have trouble, let me know and I will see if I

can find it and give you a link. I want to encourage to keep hoping and tell

you that you are in the right place. The people here are great and I am

confident that they will be able to help your daughter improve the quality of

her life. It may take time, patience, and money, but eventually, you will get

there. In the mean time, you will have support, which everyone needs.

Take care,

Dawn M

Our questions are - has she got Borreliosis or not; is her problem > mercury

poisoning, or not; can Mitochondria (the powerhouse) be at > the root of her

problems. It would be great to understand what is > going on and have sound

advice on how to address it. Any offers?> >

Enter the Windows Live Mail beta sweepstakes

http://www.imagine-msn.com/minisites/sweepstakes/mail/register.aspx

[Guest guest]

On May 11, 2006, at 3:35 AM, eric078000 wrote:

> Our questions are - has she got Borreliosis or not; is her problem

> mercury poisoning, or not; can Mitochondria (the powerhouse) be at

> the root of her problems. It would be great to understand what is

> going on and have sound advice on how to address it. Any offers?

, have you had her glutathione levels checked?

The good news is that you're about to get a world-class introduction

to the role sulfur metabolism plays in the way mitochondria process

energy. This is a very hot area of inquiry in the autism community;

now, some researchers (including some on this list) are exploring the

role that problems with the methylation (sulfur) system may play in

CFS/ME as well. It's a very new theory, but there are quite a few

people here who've worked with it and found good success.

Glutathione, one of the end products of the methylation process, is

the body's main detoxifier and antioxidant. When the body is fighting

infections like borrellia, EBV, and all the other various possible

contributors to CFS, it uses a whole lot more of it. Unfortunately,

i's suspected that these same illnesses may, directly or indirectly,

also inhibit the body's ability to make it. When glutathione levels

are too low, the body can neither effectively fight infection nor

adequately cleanse the body of everyday toxins like heavy metals and

such. This stuff builds up in the tissues and organs, causing many of

the symptoms (pain, brain fog, etc.) that are hallmarks of CFS.

Many of us on this list have had dramatic success with various

strategies that build glutathione -- through diet, through IV or IM

supplementation, and through taking other supplements that open the

blocked methylation pathways and enable the body to raise production

on its own. As glutathione increases (by whatever means), the body

begins to detox and repair itself, and may even become more effective

at fighting off the underlying infections. Over time, this can result

in strong health gains and significant recovery.

I've been on high-dose injected B12/glutathione/AMP since early

October. Over many years of work and research -- and seeing dozens of

doctors --I had already made a pretty good recovery, coming from a

state only slightly better than your daughter's to the point where I

could drive, shop, and take on some light volunteer work. Seven

months on the glutathione has put me up to around 90% recovered: I'm

well enough now that I returned to university in January to begin

work on my masters in science. I've just come through two straight

months of travel and schoolwork without a break -- and without a

crash. There is no point in the past 20 years when I could have done

this.

I'm still looking for my underlying disease causes, and making good

headway. But, in the meantime, life actually does go on. I don't have

to wait to live it.

I hope we can help point you toward resources that will do your girl

some good. It sounds like you've been a real fighter for her --

gotten good information, done all the right things. She is blessed to

have a father like you to look out for her. Too many of us know first-

hand that many parents cannot rise to the challenge the way you have.

Welcome to the list -- you and our other new folks today!

Sara

[Guest guest]

Hi Sara,

It is good to hear that you are recovering!!!! Did you ever do clelation

therapy to remove mercury??? I see so much conflicting information on how to do

this, I am SOOOO confused! I don't want a challenge to put me back. I realize

if I go this route I would need to build up glutathione. Can you tell me your

experience in getting well.

Thank you for your help,

Janet

in San Diego

Mercuria <mercuria@...> wrote:

On May 11, 2006, at 3:35 AM, eric078000 wrote:

> Our questions are - has she got Borreliosis or not; is her problem

> mercury poisoning, or not; can Mitochondria (the powerhouse) be at

> the root of her problems. It would be great to understand what is

> going on and have sound advice on how to address it. Any offers?

, have you had her glutathione levels checked?

The good news is that you're about to get a world-class introduction

to the role sulfur metabolism plays in the way mitochondria process

energy. This is a very hot area of inquiry in the autism community;

now, some researchers (including some on this list) are exploring the

role that problems with the methylation (sulfur) system may play in

CFS/ME as well. It's a very new theory, but there are quite a few

people here who've worked with it and found good success.

Glutathione, one of the end products of the methylation process, is

the body's main detoxifier and antioxidant. When the body is fighting

infections like borrellia, EBV, and all the other various possible

contributors to CFS, it uses a whole lot more of it. Unfortunately,

i's suspected that these same illnesses may, directly or indirectly,

also inhibit the body's ability to make it. When glutathione levels

are too low, the body can neither effectively fight infection nor

adequately cleanse the body of everyday toxins like heavy metals and

such. This stuff builds up in the tissues and organs, causing many of

the symptoms (pain, brain fog, etc.) that are hallmarks of CFS.

Many of us on this list have had dramatic success with various

strategies that build glutathione -- through diet, through IV or IM

supplementation, and through taking other supplements that open the

blocked methylation pathways and enable the body to raise production

on its own. As glutathione increases (by whatever means), the body

begins to detox and repair itself, and may even become more effective

at fighting off the underlying infections. Over time, this can result

in strong health gains and significant recovery.

I've been on high-dose injected B12/glutathione/AMP since early

October. Over many years of work and research -- and seeing dozens of

doctors --I had already made a pretty good recovery, coming from a

state only slightly better than your daughter's to the point where I

could drive, shop, and take on some light volunteer work. Seven

months on the glutathione has put me up to around 90% recovered: I'm

well enough now that I returned to university in January to begin

work on my masters in science. I've just come through two straight

months of travel and schoolwork without a break -- and without a

crash. There is no point in the past 20 years when I could have done

this.

I'm still looking for my underlying disease causes, and making good

headway. But, in the meantime, life actually does go on. I don't have

to wait to live it.

I hope we can help point you toward resources that will do your girl

some good. It sounds like you've been a real fighter for her --

gotten good information, done all the right things. She is blessed to

have a father like you to look out for her. Too many of us know first-

hand that many parents cannot rise to the challenge the way you have.

Welcome to the list -- you and our other new folks today!

Sara

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 May 11, 2006, at 8:26 PM, Janet s wrote:

> Hi Sara,

>

> It is good to hear that you are recovering!!!! Did you ever do

> clelation therapy to remove mercury??? I see so much conflicting

> information on how to do this, I am SOOOO confused! I don't want a

> challenge to put me back. I realize if I go this route I would need

> to build up glutathione. Can you tell me your experience in getting

> well.

No, I haven't, though I've got some mercury testing coming up that

will tell whether this is needed. I'm still getting a lot of mileage

out of the glutathione (am noticing that my thyroid -- which I've

been on meds for for about four years now -- is starting to rev up in

recent weeks, for example); mercury and several other things are

still ahead of me.

It's important to note that I've had this illness for over 20 years.

For most of that time, nobody's had any real clue what to do for it.

My hard years in bed began in 1989-90, and continued for the next

decade. It was 1997 before I got an actual diagnosis, even. So my

recovery has been a long wander, mostly via guesswork and

serendipity. The highlights:

1999 -- Diagnosed with obstructive sleep apnea, which was treated

with CPAP and surgery. Getting a good night's sleep for the first

time in decades helped my FM considerably, making life a lot less

painful; and lifted my brain fog quite a bit as well.

2001 -- Discovered that I was allergic to soy, almost by accident.

Eliminating this from my diet significantly reduced my asthma, and

pretty much took care of the rest of my FM. The soy was creating

inflammations from stem to stern; when I stopped eating it, many of

these went away.

2002 -- While websurfing one night to find out more about living with

soy allergies, I learned that soy can be very hard on the thyroid.

This led to research on thyroid problems (which my doctor had

suspected for years, tested for using standard tests, and then

ignored). I finally went to a doctor who specialized in " silent

hypothyroid, " which it turns out is an extremely common in CFS

patients. He gave me Armour Thyroid, which created another huge gain.

By this point, I was operating in the 70% functionality range again.

2003 -- Working with another doctor on the allergy front, I added NAC

and some hormone support herbs, which were a nice boost. His tests

found that I was high in mercury. I've been taking the NAC ever

since, and suspect it's done a lot to gradually release much of my

mercury over the years.

2005 -- Hooked up with the Fibro & Fatigue Center (FFC) in LA, which

started me on the glutathione shots. They also added bromelian,

quercetin, ENADA, and bioidentical hormones to my regime. This

brought me to my present level. Not only do I not crash anymore; I've

also found about 25 missing IQ points. Last fall was my own private

" Flowers for Algernon " moment.

2006 -- Am now working with a local doctor to FINALLY get tests for

Lyme, babesia, mycoplasma, CMV, etc. etc; as well as a new mercury

workup to see what might be left. I'm also concerned by my jaw glands

on the left side, which have been swollen for years and years, and am

looking for the right practitioner to explore a possible infected

socket with. Those the next frontiers.

That's my journey, in a nutshell. There's also a long list of

supplements that have been useful over time, and which I find

indispensable; but they were added one at a time over the years, and

now number in the dozens. Were I making suggestions for good ones to

try, magnesium would be the first candidate. Glucosamine/MSM if you

have joint pain. Conjugated linoleic acid (CLA) and L-Carnitine seem

to help my energy level.

Sara

[Guest guest]

HI Sara,

I see you have had a long journey too! I have also been sick for 25 years. I

have had some years where I could function, but recently I have relapsed and

that is why I am on this list.

I just started on the glutathione pushes and I know mercury is an issue in

there.

When you get to that issue, how are you going to test for it?? I see

conflicting theroys out there about doing a Hair analysis or maybe doing a

challenge. (The challenge really worries me. ) Have you given this some thought

or are you at a different place???

Janet

Mercuria <mercuria@...> wrote:

On May 11, 2006, at 8:26 PM, Janet s wrote:

> Hi Sara,

>

> It is good to hear that you are recovering!!!! Did you ever do

> clelation therapy to remove mercury??? I see so much conflicting

> information on how to do this, I am SOOOO confused! I don't want a

> challenge to put me back. I realize if I go this route I would need

> to build up glutathione. Can you tell me your experience in getting

> well.

No, I haven't, though I've got some mercury testing coming up that

will tell whether this is needed. I'm still getting a lot of mileage

out of the glutathione (am noticing that my thyroid -- which I've

been on meds for for about four years now -- is starting to rev up in

recent weeks, for example); mercury and several other things are

still ahead of me.

It's important to note that I've had this illness for over 20 years.

For most of that time, nobody's had any real clue what to do for it.

My hard years in bed began in 1989-90, and continued for the next

decade. It was 1997 before I got an actual diagnosis, even. So my

recovery has been a long wander, mostly via guesswork and

serendipity. The highlights:

1999 -- Diagnosed with obstructive sleep apnea, which was treated

with CPAP and surgery. Getting a good night's sleep for the first

time in decades helped my FM considerably, making life a lot less

painful; and lifted my brain fog quite a bit as well.

2001 -- Discovered that I was allergic to soy, almost by accident.

Eliminating this from my diet significantly reduced my asthma, and

pretty much took care of the rest of my FM. The soy was creating

inflammations from stem to stern; when I stopped eating it, many of

these went away.

2002 -- While websurfing one night to find out more about living with

soy allergies, I learned that soy can be very hard on the thyroid.

This led to research on thyroid problems (which my doctor had

suspected for years, tested for using standard tests, and then

ignored). I finally went to a doctor who specialized in " silent

hypothyroid, " which it turns out is an extremely common in CFS

patients. He gave me Armour Thyroid, which created another huge gain.

By this point, I was operating in the 70% functionality range again.

2003 -- Working with another doctor on the allergy front, I added NAC

and some hormone support herbs, which were a nice boost. His tests

found that I was high in mercury. I've been taking the NAC ever

since, and suspect it's done a lot to gradually release much of my

mercury over the years.

2005 -- Hooked up with the Fibro & Fatigue Center (FFC) in LA, which

started me on the glutathione shots. They also added bromelian,

quercetin, ENADA, and bioidentical hormones to my regime. This

brought me to my present level. Not only do I not crash anymore; I've

also found about 25 missing IQ points. Last fall was my own private

" Flowers for Algernon " moment.

2006 -- Am now working with a local doctor to FINALLY get tests for

Lyme, babesia, mycoplasma, CMV, etc. etc; as well as a new mercury

workup to see what might be left. I'm also concerned by my jaw glands

on the left side, which have been swollen for years and years, and am

looking for the right practitioner to explore a possible infected

socket with. Those the next frontiers.

That's my journey, in a nutshell. There's also a long list of

supplements that have been useful over time, and which I find

indispensable; but they were added one at a time over the years, and

now number in the dozens. Were I making suggestions for good ones to

try, magnesium would be the first candidate. Glucosamine/MSM if you

have joint pain. Conjugated linoleic acid (CLA) and L-Carnitine seem

to help my energy level.

Sara

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 May 12, 2006, at 12:29 PM, Janet s wrote:

> HI Sara,

>

> I see you have had a long journey too! I have also been sick for

> 25 years. I have had some years where I could function, but

> recently I have relapsed and that is why I am on this list.

>

> I just started on the glutathione pushes and I know mercury is an

> issue in there.

>

> When you get to that issue, how are you going to test for it?? I

> see conflicting theroys out there about doing a Hair analysis or

> maybe doing a challenge. (The challenge really worries me. ) Have

> you given this some thought or are you at a different place???

>

I've done hair analysis. At this point, any serious assay would

involve chelation.

Sara

[Guest guest]

HI Sara,

Thanks for the info on the Coconut Oil. I went ahead and ordered it.

Back to the mercury. Are you going to take a challenge?? Or just start

clelating when you get to the place of wanting to do something about it???

Thank you for all your help,

Janet

in San Diego

Mercuria <mercuria@...> wrote:

On May 12, 2006, at 12:29 PM, Janet s wrote:

> HI Sara,

>

> I see you have had a long journey too! I have also been sick for

> 25 years. I have had some years where I could function, but

> recently I have relapsed and that is why I am on this list.

>

> I just started on the glutathione pushes and I know mercury is an

> issue in there.

>

> When you get to that issue, how are you going to test for it?? I

> see conflicting theroys out there about doing a Hair analysis or

> maybe doing a challenge. (The challenge really worries me. ) Have

> you given this some thought or are you at a different place???

>

I've done hair analysis. At this point, any serious assay would

involve chelation.

Sara

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 May 12, 2006, at 1:39 PM, Janet s wrote:

> Thanks for the info on the Coconut Oil. I went ahead and ordered it.

See how you like it. Like I said: a lot of us have done well with it.

(I find it almost too much to bear, personally.) Other folks, nada.

But you'll never know until you try; and as this stuff goes, it's not

an expensive or risky experiment.

> Back to the mercury. Are you going to take a challenge?? Or just

> start clelating when you get to the place of wanting to do

> something about it???

I'm not sure what you mean by " take a challenge. " The usual method is

for the doctor or lab to administer a mercury chelating agent, and

then track the amount of mercury that appears in the urine in the

time that follows. If you start unloading Hg in your pee, it means

there's mercury in your tissues.

Yes, this has its risky side: mobilizing mercury is always risky. But

I've been on NAC for five years, and gluthathione for seven months,

both of which have almost certainly lowered my overall systemic

mercury load over time; and will also confer some protective effects

if more mercury starts to move. There are other protective measures

one can take as well; and I'll read up on those in detail and use

them when the time comes.

But that's a bit out on the schedule -- probably August at the

earliest. If there's one thing this illness has taught me, it's to

be slow and systematic and take one thing at a time. Haste makes

waste of time, energy, and money -- none of which are in abundant

supply. So I've got a list, and am working through it, deliberately

and methodically.

The downside is that there always seems to be some new thing to work

through. The upside is that, once in a while, one of them actually

works.

Sara

[Guest guest]

Hi Sara,

Congratulations on your 90% recovery!

Have you been tested for underlying infections? I'm still trying to

get to the bottom of mine; I'm suspecting that's it's viral.

Could you give me your source for AMP?

thanks!

Cheli

> I've been on high-dose injected B12/glutathione/AMP since early

> October. Over many years of work and research -- and seeing dozens

of

> doctors --I had already made a pretty good recovery, coming from a

> state only slightly better than your daughter's to the point where

I

> could drive, shop, and take on some light volunteer work. Seven

> months on the glutathione has put me up to around 90% recovered:

I'm

> well enough now that I returned to university in January to begin

> work on my masters in science. I've just come through two straight

> months of travel and schoolwork without a break -- and without a

> crash. There is no point in the past 20 years when I could have

done

> this.

>

> I'm still looking for my underlying disease causes, and making

good

> headway. But, in the meantime, life actually does go on. I don't

have

> to wait to live it.

>

> I hope we can help point you toward resources that will do your

girl

> some good. It sounds like you've been a real fighter for her --

> gotten good information, done all the right things. She is blessed

to

> have a father like you to look out for her. Too many of us know

first-

> hand that many parents cannot rise to the challenge the way you

have.

>

> Welcome to the list -- you and our other new folks today!

>

> Sara

>

[Guest guest]

On May 31, 2006, at 6:26 AM, cheli_luxe wrote:

> Hi Sara,

>

> Congratulations on your 90% recovery!

>

> Have you been tested for underlying infections? I'm still trying to

> get to the bottom of mine; I'm suspecting that's it's viral.

I just wrote about that: am getting these done next week (Tuesday or

Wednesday). Finally. At long last.

>

> Could you give me your source for AMP?

I don't know of a source, but my compounding pharmacy apparently

found it with no problem. It seems logical to assume that most other

experienced compounders would also know where to go.

They didn't know where to turn for glutathione, though. I sent them

to Wellness Pharmacy in Birmingham for that. It's supposedly on its way.

Sara