Re: Dazed & Confused! All treatments/Janet

[Guest guest]

" Am I going in the right direction??? What would you do next??? "

You need to concentrate on getting your pathogen load down whilst boosting

glutathione via adding supps that will kill them off.

Regards

CS

[Guest guest]

Hi, Janet.

" alwaysacutie2u " <jgstev716@...> wrote:

>

> HI All,

>

> I am new to this group and trying to learn what I can do to treat my

> CFS and get on with my life. My big beef is the crashing after a

> small amount of exertion. When that happens, I do have the brain

> fog, extreme fatigue and the FM symptoms.

***If you've have had a regular doc rule out other serious illnesses that might

produce these symptoms(hepatitis, liver disease, cancer, etc), the CFS/FM

diagnosis seems on target.

After being here a month or so I have realized that CFS/FM COULD be

caused by: Lyme (but the tests for that are iffy, there is no

> agreement on whether they are flawed or even if Lyme is the problem

in CFS!

***I guess for someone new here lack of agreement is a troublesome reality and I

may not be of help in alleviating your concern. But for what it's worth(FWIW),

having had three positive lyme tests from three highly regarded labs I think the

labs are accurate, but just not diagnostic to what the key diagnosis is.

***The lyme hypothesis simply has not lead to any useful treatments,

antibiotics, etc., and doesn't explain all the other abnormalities found on

tests(low glutathione, low magnesium, low growth hormone, low vasopressin

hormone, dysbiosis, low thyroid, low blood pressure, too high 24 hr urine

excretion, etc). Then on the other hand, the CFS from poor glutathione status

based on genetics, which would also predispose activation of latent bacteria and

viruses as well as heavy metal retention, does explain all this and has been

clearly helpful.

Or this COULD be caused by a bacteria infection; or this COULD be caused by a

viral infection; or it COULD be genetics; or it COULD heavy metals, or it COULD

BE BITOXINS, ETC, ETC, ETC.

***Glutathione depletion and poor methylation can lead to the bacterial

activation, viral activation and heavy metal problems all in one as I've note.

All this is just one hypothesis, not several, that I see.

***Mold exposure(biotoxin illness) may be a whole other subset and does appear

to work for some who practice avoidance and follow Dr Shoemaker treatments.

On top of that there is no consensus on how to chelate metals in the

> best and safest way!

***In my opinion, the 2004 ACAM Heavy Metal Workshop on CD from Professional

Audio(google em') is a good place to start to learn more about this. My

research says there are only two proven chelators to be trusted to chelate

mercury, the biggie toxin to target.

***DMPS and DMSA are the only ones that fit the bill as scientifically proven to

chelate mercury. Other suggestion out there are not proven to work and you run

the risk of wasted time, money and effort in the hopes that they might.

I think is a good

> HAS ANYONE GOTTEN WELL?????? HOW????? WITHOUT ENDING UP IN THE POOR HOUSE???

***I've counted 9 cases from this list and 2 seperately that have gotten well

over the last few years, with myself and CS on this list now knockin' at

wellnesses door fairly strongly. This is just this list, not all the docs who

have implemented therapies talked about here and certainly not the autism

success cases, in which there seems to be a connection to CFS in core pathology.

***As far as money goes, it's something I think most of us grapple with quite

often, particularly all the money we might have made if not for this illness!

Grapple or not, find a way! Be creative, innovative, whatever, but just do it!

Life(a healthy one) is worth it.

[Guest guest]

HI ,

I appreciate your reply and giving me some clarity as to what is really going

on. This is what I have done.

I am sent in my genetic test to Amy Yasko on the 15th of May and I am waiting

on results. In the meatime, I have been building glutathione with Whey Isolate

Protein (I hope this can continue, cause I have a heck of a yeast infection.)

taking a glutathione push about 2-3 times a month and I use turmeric, plus a

sublingual glutathione torch of 250.mg twice a day.

While I am wating for the genetic test to come back, I am wondering which

direction to go. Should I test for infections??? If so, which ones?? Can you

recommend a lab??? What direction would you go??? Viral, bacteria, gut?? Which

type of bacteria am I looking for???

The Lyme issue feels to me to be to iffy to even work with. Even if you treat

Lyme, can people get over this???

As soon as I get my glutathione up and get my genetic tests back I plan to

start with the chelating. Am I going in the right direction??? What would you do

next???

Thank you for all your help!

Janet

in San Diego

davidhall2020 <davidhall@...> wrote:

Hi, Janet.

" alwaysacutie2u " <jgstev716@...> wrote:

>

> HI All,

>

> I am new to this group and trying to learn what I can do to treat my

> CFS and get on with my life. My big beef is the crashing after a

> small amount of exertion. When that happens, I do have the brain

> fog, extreme fatigue and the FM symptoms.

***If you've have had a regular doc rule out other serious illnesses that might

produce these symptoms(hepatitis, liver disease, cancer, etc), the CFS/FM

diagnosis seems on target.

After being here a month or so I have realized that CFS/FM COULD be

caused by: Lyme (but the tests for that are iffy, there is no

> agreement on whether they are flawed or even if Lyme is the problem

in CFS!

***I guess for someone new here lack of agreement is a troublesome reality and I

may not be of help in alleviating your concern. But for what it's worth(FWIW),

having had three positive lyme tests from three highly regarded labs I think the

labs are accurate, but just not diagnostic to what the key diagnosis is.

***The lyme hypothesis simply has not lead to any useful treatments,

antibiotics, etc., and doesn't explain all the other abnormalities found on

tests(low glutathione, low magnesium, low growth hormone, low vasopressin

hormone, dysbiosis, low thyroid, low blood pressure, too high 24 hr urine

excretion, etc). Then on the other hand, the CFS from poor glutathione status

based on genetics, which would also predispose activation of latent bacteria and

viruses as well as heavy metal retention, does explain all this and has been

clearly helpful.

Or this COULD be caused by a bacteria infection; or this COULD be caused by a

viral infection; or it COULD be genetics; or it COULD heavy metals, or it COULD

BE BITOXINS, ETC, ETC, ETC.

***Glutathione depletion and poor methylation can lead to the bacterial

activation, viral activation and heavy metal problems all in one as I've note.

All this is just one hypothesis, not several, that I see.

***Mold exposure(biotoxin illness) may be a whole other subset and does appear

to work for some who practice avoidance and follow Dr Shoemaker treatments.

On top of that there is no consensus on how to chelate metals in the

> best and safest way!

***In my opinion, the 2004 ACAM Heavy Metal Workshop on CD from Professional

Audio(google em') is a good place to start to learn more about this. My

research says there are only two proven chelators to be trusted to chelate

mercury, the biggie toxin to target.

***DMPS and DMSA are the only ones that fit the bill as scientifically proven to

chelate mercury. Other suggestion out there are not proven to work and you run

the risk of wasted time, money and effort in the hopes that they might.

I think is a good

> HAS ANYONE GOTTEN WELL?????? HOW????? WITHOUT ENDING UP IN THE POOR HOUSE???

***I've counted 9 cases from this list and 2 seperately that have gotten well

over the last few years, with myself and CS on this list now knockin' at

wellnesses door fairly strongly. This is just this list, not all the docs who

have implemented therapies talked about here and certainly not the autism

success cases, in which there seems to be a connection to CFS in core pathology.

***As far as money goes, it's something I think most of us grapple with quite

often, particularly all the money we might have made if not for this illness!

Grapple or not, find a way! Be creative, innovative, whatever, but just do it!

Life(a healthy one) is worth it.

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 30, 2006, at 10:17 PM, Janet s wrote:

> HI ,

>

> I appreciate your reply and giving me some clarity as to what is

> really going on. This is what I have done.

>

> I am sent in my genetic test to Amy Yasko on the 15th of May and

> I am waiting on results. In the meatime, I have been building

> glutathione with Whey Isolate Protein (I hope this can continue,

> cause I have a heck of a yeast infection.) taking a glutathione

> push about 2-3 times a month and I use turmeric, plus a sublingual

> glutathione torch of 250.mg twice a day.

>

> While I am wating for the genetic test to come back, I am

> wondering which direction to go. Should I test for infections??? If

> so, which ones?? Can you recommend a lab??? What direction would

> you go??? Viral, bacteria, gut?? Which type of bacteria am I

> looking for???

>

> The Lyme issue feels to me to be to iffy to even work with. Even

> if you treat Lyme, can people get over this???

>

> As soon as I get my glutathione up and get my genetic tests back

> I plan to start with the chelating. Am I going in the right

> direction??? What would you do next???

Janet, you might want to consider checking in with the Fibro and

Fatigue Center in Torrance. They'll run all these tests and deal with

the outfall competently.

Sara

[Guest guest]

Hi Sara,

I wondered about the Fibro and Fatigue Center. Have you used them??? Are they

expensive??? I guess my real question is do they know the right tests to run

and how to treat from there???

Thank you for your help,

Janet

Mercuria <mercuria@...> wrote:

On May 30, 2006, at 10:17 PM, Janet s wrote:

> HI ,

>

> I appreciate your reply and giving me some clarity as to what is

> really going on. This is what I have done.

>

> I am sent in my genetic test to Amy Yasko on the 15th of May and

> I am waiting on results. In the meatime, I have been building

> glutathione with Whey Isolate Protein (I hope this can continue,

> cause I have a heck of a yeast infection.) taking a glutathione

> push about 2-3 times a month and I use turmeric, plus a sublingual

> glutathione torch of 250.mg twice a day.

>

> While I am wating for the genetic test to come back, I am

> wondering which direction to go. Should I test for infections??? If

> so, which ones?? Can you recommend a lab??? What direction would

> you go??? Viral, bacteria, gut?? Which type of bacteria am I

> looking for???

>

> The Lyme issue feels to me to be to iffy to even work with. Even

> if you treat Lyme, can people get over this???

>

> As soon as I get my glutathione up and get my genetic tests back

> I plan to start with the chelating. Am I going in the right

> direction??? What would you do next???

Janet, you might want to consider checking in with the Fibro and

Fatigue Center in Torrance. They'll run all these tests and deal with

the outfall competently.

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]

Hi CS,

What " pathogen load " are you referring to?

Which pathogens have you been tested for and which have you killed

off?

Would you mind sharing where your GSH levels were in the past and at

present? What forms of GSH did you take to " boost " it?

thanks!

Cheli

> You need to concentrate on getting your pathogen load down whilst

boosting

> glutathione via adding supps that will kill them off.

>

>

> Regards

> CS

>

>

>

>

>

[Guest guest]

On May 30, 2006, at 11:24 PM, Janet s wrote:

> Hi Sara,

>

> I wondered about the Fibro and Fatigue Center. Have you used

> them??? Are they expensive??? I guess my real question is do they

> know the right tests to run and how to treat from there???

Several of us here are patients at the various FFCs. I think I may be

the only one actually being seen at the LA office, though.

" Expensive " is relative. I'm on the out-of-towner's program (you're

much more local, and may choose another plan), which cost $1200 for

one one-hour first visit and three half-hour follow-ups (can be by

phone or in person). This did not include the testing, which is

extremely expensive; but they will work with your insurance on all of

this. If you simply pay by the hour, it's about $350/hr, give or take.

Yes, they know which tests to run, and how to treat. CFS is what they

do. (This particular office also has a second practice in longevity

medicine, but there's a lot of overlap between the issues and

treatments.)

It's been interesting hearing from all the various FFC patients here

over the past year, as the number of clinics has grown and as the

network itself has become more knowledgeable about treating us.

They're fairly new, but seem to be mastering their learning curve

quickly.

There may be better doctors in SoCal that people here can recommend

you to, but I'm not sure who they are.

Sara

[Guest guest]

Hi Janet. I have heard more negatives about the F & F centers than positives. A

new one

opened about 9 months ago in our area, and I have yet to hear of any of the four

people in

my local support group getting any improvement. They were able however to at

least find

out what bugs they did or didn't have.

Personally, I think they overdo it -- 30 vials of blood, sometimes more on a

second visit,

then throw in alot of abx's, plus antifungals, plus hormones -- for me, that

seems like

waaaay too much for the liver to handle.

I don't understand why they don't treat one or two issues -- like the main

culprits -- first,

then see if hormonal problems have resolved, then move on to the next issues.

I think Ken has a poll of the Fatigue and Fibro Centers...?

Dan

>

> > HI ,

> >

> > I appreciate your reply and giving me some clarity as to what is

> > really going on. This is what I have done.

> >

> > I am sent in my genetic test to Amy Yasko on the 15th of May and

> > I am waiting on results. In the meatime, I have been building

> > glutathione with Whey Isolate Protein (I hope this can continue,

> > cause I have a heck of a yeast infection.) taking a glutathione

> > push about 2-3 times a month and I use turmeric, plus a sublingual

> > glutathione torch of 250.mg twice a day.

> >

> > While I am wating for the genetic test to come back, I am

> > wondering which direction to go. Should I test for infections??? If

> > so, which ones?? Can you recommend a lab??? What direction would

> > you go??? Viral, bacteria, gut?? Which type of bacteria am I

> > looking for???

> >

> > The Lyme issue feels to me to be to iffy to even work with. Even

> > if you treat Lyme, can people get over this???

> >

> > As soon as I get my glutathione up and get my genetic tests back

> > I plan to start with the chelating. Am I going in the right

> > direction??? What would you do next???

>

> Janet, you might want to consider checking in with the Fibro and

> Fatigue Center in Torrance. They'll run all these tests and deal with

> the outfall competently.

>

> 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]

Hi CS,

What " pathogen load " are you referring to?

***If you suspect you have low glutathione - you may also have yeast &

bacteria etc problems

Which pathogens have you been tested for and which have you killed

off?

***** None - the results i am getting are evidence in themselves. ie i took

whey protein for 3 months to get glutathione building going and then added

lactofferrin exclusively for 4 weeks ( for bacteria / parasites )and noticed an

immediate benefit when this wore off i took coconut oil fo 4 weeks ( for

yeast ) and noticed a benefit and then took manuka honey ( h pylori ) and

noticd an immediate benefit. I chose these supps specifically for a reason.

Would you mind sharing where your GSH levels were in the past and at

present? What forms of GSH did you take to " boost " it?

***I suspect my glutathione level are close to 100 % now - It has taken me

over a year to get to this stage. Trust me you will know when it is working !!

I have discovered something quite interesting as i dont think increasing

glutathione is the whole story - In my case you also need to balance phase 1

detox as this could still be revvving up too much - Im looking into this now.

Regards

CS

[Guest guest]

Hi

I got well. I spent a lot of money along the way. You know how it is, probably

95% of my money was wasted and 5% was useful, but it's impossible to know ahead

of time what 5% will be useful so you've just got to spend it to find out.

- Blood thinners (genetically thick blood)

- Glutathione

- Mercury out (got worse at first before it got better)

- B12 shots got the mercury out of my brain

- Antibiotics and antivirals

All of those got me a lot better but I was still sick. The key for me was mold

toxins. Got away from that and was basically " cured. "

If I were to do it again I would focus on genetic testing. I did the gene test

for poor mold and other toxin clearance. (The Shoemaker test) But I hear about

other ones all the time. Just read in Alternative Medicine about testing that

is available to determine if you detox mercury fast or slow. And also tests

like Great Smokies which tell how your detox system is working, what

antioxidants you need, whether you have leaky gut, that type of thing.

It seems to me the problem is there are so many things to try, that to shotgun

them (by taking every supplement that might work for example) winds up costing

you as much as just getting the tests done and figuring out what will really

help you.

Doris

----- Original Message -----

HAS ANYONE GOTTEN WELL?????? HOW????? WITHOUT ENDING UP IN THE POOR HOUSE???

[Guest guest]

Doris, how long were you ill before you got well? Also, how severe

was your illness? Were you able to work, homebound, bedbound, etc.?

How long did you take antibiotics? Thanks in advance,

Vickie

>Doris Brown wrote:

>

> Hi

> I got well. I spent a lot of money along the way. You know how it

is, probably 95% of my money was wasted and 5% was useful, but it's

impossible to know ahead of time what 5% will be useful so you've

just got to spend it to find out.

>

> - Blood thinners (genetically thick blood)

> - Glutathione

> - Mercury out (got worse at first before it got better)

> - B12 shots got the mercury out of my brain

> - Antibiotics and antivirals

> All of those got me a lot better but I was still sick. The key for

me was mold toxins. Got away from that and was basically " cured. "

>

> If I were to do it again I would focus on genetic testing. I did

the gene test for poor mold and other toxin clearance. (The

Shoemaker test) But I hear about other ones all the time. Just read

in Alternative Medicine about testing that is available to determine

if you detox mercury fast or slow. And also tests like Great Smokies

which tell how your detox system is working, what antioxidants you

need, whether you have leaky gut, that type of thing.

>

> It seems to me the problem is there are so many things to try, that

to shotgun them (by taking every supplement that might work for

example) winds up costing you as much as just getting the tests done

and figuring out what will really help you.

>

> Doris

>

> ----- Original Message -----

> HAS ANYONE GOTTEN WELL?????? HOW????? WITHOUT ENDING UP IN THE

POOR HOUSE???

>

>

>

[Guest guest]

Hi

I was sick since 1997. I was worked for the first year, but less and less as

time went on, then was on disability for about a year, then got sort of better

and went back to work for 2 years. Then had the fillings out and got very sick

and was on disability for the next 6. My illness tended to be infectious, the

flu-like symtpoms, rather than the extreme fatigue symptoms. (Also had very low

bp and couldn't stand for more than a few seconds.) I tested positive for a lot

of viruses and bacteria, and had the typical immune markers like low NK cell

activity. I also had extreme brain symtpoms in the couple years after the

fillings were removed, so bad I couldn't tell you my telephone number or

birthday much of the time. I had spots on my MRI, an abnormal SPECT, abnormal

QEEG, abnormal neuropsych test, abnormal tilt test. Would love to get these all

done again if I were rich, but I would bet they would have to be fairly normal

now.

I took antibiotics the longest, at least 5 years of doxy. I just take pretty

minimal supplements now, plus sleep drugs I'm trying to get off of, and that's

usually it. I do have an antibiotic resistent staph infection in my sinuses and

it flares up, and antibiotics will help but they really don't know how to get

rid of it so I'm just kind of waiting until they do. It doesn't cause me to be

really sick, just my sinuses messed up. I irrigate them minimize that problem.

I started doing ceramics as a hobby right about when I got sick. I knew there

was mold in clay but I kind of tested myself and didn't seem to get sicker from

it. I moved from the SF Bay Area to Nevada and that's when I was well. I

thought it was chemicals because I used to live near an auto plant and now I

live on a mountain. And I was very chemically sensitive by the end. It was

about 6 months before I unpacked my studio and got the clay out, and that made

me very sick. That's when I had the genetic test that said I didn't clear mold

toxins. Now I don't do clay and I am not sick. I think the mistake people make

is that they look for immediate reactions to things. I never had an immediate

reaction, but I think it just lowered my immune system so I had all kinds of

other problems. And taxed my liver trying to detox so it couldn't detox other

things.

Doris

Re: Dazed & Confused! All treatments/Janet

Doris, how long were you ill before you got well? Also, how severe

was your illness? Were you able to work, homebound, bedbound, etc.?

How long did you take antibiotics? Thanks in advance,

Vickie

>Doris Brown wrote:

>

> Hi

> I got well. I spent a lot of money along the way. You know how it

is, probably 95% of my money was wasted and 5% was useful, but it's

impossible to know ahead of time what 5% will be useful so you've

just got to spend it to find out.

>

> - Blood thinners (genetically thick blood)

> - Glutathione

> - Mercury out (got worse at first before it got better)

> - B12 shots got the mercury out of my brain

> - Antibiotics and antivirals

> All of those got me a lot better but I was still sick. The key for

me was mold toxins. Got away from that and was basically " cured. "

>

.

[Guest guest]

Thanks, Doris. Your story was very helpful. One thing I found

interesting is that you reacted to mold in clay. I have a clay tile

floor in my house that is not glazed. It has never occurred to me

that it might be outgassing mold.

So many doctors have told me that taking antibiotics too long would

make me worse not better. Apparently, 5 years of antibiotics helped,

not harmed, you. I am hearing more and more evidence that it is

people who take antibiotics for many years, or who are on maintenance

doses indefinitely, who regain the ability to function at least close

to normal.

So glad you are well!

Vickie

>

> >

> > Hi

> > I got well. I spent a lot of money along the way. You know how

it

> is, probably 95% of my money was wasted and 5% was useful, but

it's

> impossible to know ahead of time what 5% will be useful so you've

> just got to spend it to find out.

> >

> > - Blood thinners (genetically thick blood)

> > - Glutathione

> > - Mercury out (got worse at first before it got better)

> > - B12 shots got the mercury out of my brain

> > - Antibiotics and antivirals

> > All of those got me a lot better but I was still sick. The key

for

> me was mold toxins. Got away from that and was basically " cured. "

> >

> .

>

>

>

>

[Guest guest]

Thanks Vickie!

Sorry, I should clarify about the clay. It is wet clay that has mold because

there are organics in the clay, and it is all sealed up in a bag. Sometimes you

will see the mold on the inside of the bag, but even when not it is there

microscopically inside the clay. Potters don't actually mind, in fact the

moldier the better because it makes the clay have better throwing

characteristics. But when the clay is fired the organics burn out. The mold

couldn't withstand firing, and even a mold toxin which is inert so it can't die,

I doubt it could withstand the 2000 degree firing temperatures.

I found that many antibiotics tore up my gut in the usual way, but doxycyline

never did. In fact I had some yeast before the doxy and it would go away on it.

I heard that from many other people too, it has anti-fungal properties. So I

think one has to be careful about the kind of antibiotic they take. I suspect

that if more people could get IV's it might be more helpful.

Doris

----- Original Message -----

From: Vickie

Thanks, Doris. Your story was very helpful. One thing I found

interesting is that you reacted to mold in clay. I have a clay tile

floor in my house that is not glazed. It has never occurred to me

that it might be outgassing mold.

So many doctors have told me that taking antibiotics too long would

make me worse not better. Apparently, 5 years of antibiotics helped,

not harmed, you. I am hearing more and more evidence that it is

people who take antibiotics for many years, or who are on maintenance

doses indefinitely, who regain the ability to function at least close

to normal.

So glad you are well!

Vickie