Searching for a CFS cure before time runs out...

[Guest guest]

I have suffered with CFIDS for almost 18 years. I was diagnosed in 1993 with the

Epstein-Barr Virus that then turned into a full blown syndrome which included

fatigue and intolerance to exercise, skin rash, diarrhea, stomach pain, muscle

aches and spasms, vomiting, impaired cognitive ability, and chronic insomnia. I

have recently also developed an environmental sensitivity to EMF, electronic

devices, and certain metals which makes my CFS symptoms even worse. What is most

puzzling is that all my medical tests over the years show me to be in perfect

health.

I have had a lot of success treating CFS with good nutrition, diet, exercise,

and rest. However, the progress is very slow, and setbacks can put me back in

bed at any moment. I am running out of patience and have begun looking for a

" cure " .

I am just wondering in general what the latest CFS research is showing as a

possible cause or treatment for this condition. There are doctors that want to

run expensive tests regarding trace minerals, Porphyrins, enzymes, and other

things related to " detox " and " heavy metals " . Some even want to check me for

mercury dental fillings. Their general theory seems to be that CFS is caused by

an overload of toxicity, which can somehow be reversed.

To be honest, I don't hear many good stories from the CFS community regarding

progress or treatment. I would hate to spend thousands of dollars to make this

syndrome even worse.

Is there anyone here who has successfully treated or cured CFIDS through a

doctor or clinic? Is this just a wild goose chase that is going to cause me

more suffering?

Thanks,

Ace

[Guest guest]

wrote:

> Is there anyone here who has successfully treated or cured CFIDS through a

doctor or clinic? Is this just a wild goose chase that is going to cause me

more suffering?

Marty Pall cured his own CFIDS.

I slowly developed CFIDS over 22 years ago following toxic chemical

exposures. I was tentatively diagnosed by myself and my physician

working together in 1990. I was then sent to an infectious disease

specialist just to be sure my physician hadn't missed anything in the

year we spent ruling everything out. It took him another 2-3 months to

re-check everything, run a few more tests and give me the formal

diagnosis of CFIDS. Every single one of my tests were normal/negative,

and all other diseases had been ruled out, including Lyme, lupus and MS.

I joined a local support group and was given a copy of a protocol

developed by Dr. Cheney. It used a number of natural things and

some pharmaceuticals. It gave me a place to start.

Using my medical training, I went to the medical school library and read

everything I could find at the time about CFIDS. I then wrote down all

my symptoms, all the possible causes for those symptoms and researched

natural treatments for those causes. I developed my own treatment protocol.

I went from being nearly incapacitated to staying up all hours and

running around. No one could believe the change. In 1999-2000, I went

into a nearly year-long remission.

Unfortunately, the chemicals had caused damage in my brain, which is

documented by testing. Not realizing, I was still exposing myself to

all the toxic crap I'd been using for years. I wound up developing MCS,

which is my worst problem now.

In 2001, I went to see Dr. Klimas. She reviewed all my records,

took an extensive history, did an exam and drew blood for tests. I

spent some two to three hours with her. All my tests (as usual) were

normal, except for the immunological studies, which showed a damaged

immune system. She agreed that my CFIDS was caused by toxic chemicals.

She also told me that I was her healthiest patient and that I should

keep doing whatever it was I was doing.

Six years ago, I ran into Marty Pall online. I aksed him for a copy of

his paper and info on the protocol. I read the paper. The protocol was

nearly identical to mine. I was excited. I called Marty and we talked

for about three hours. I was convinced he was on the right track. I

added in the components missing in my protocol, and my MCS improved a

bit. I found it to be dramatic.

Unfortunately, due to an A/C problem I had to have my ducts replaced.

Long story short, the Atco flex ducts that are GreenGuard certified

turned out to be outgassing toxic chemicals. I wound up inhaling and

absorbing the crap through my skin for a year. This has really set me back.

Regardless of this, I do believe Marty is on the right track. Many

people have gotten good results from his protocol, including myself.

Jeri <teewinot13@...>

@>--->---->-------------------<----<---<@

Dr. Pall's NO/ONOO- Theory/Treatment Discussion Group:

TenthParadigmSociety

@>----------<---------->-----------------------<----------<----------<@

The Tenth Paradigm - Dr. Pall's Website for CFS/MCS/FM/ETC.:

http://www.thetenthparadigm.org

@>----------<---------->-----------------------<----------<----------<@

MCS-Florida - For All Chemically Sensitive Floridians

MCS-Florida

[Guest guest]

Dear Ace,

There have been a few people who've made a complete, or almost

complete, or pretty good recovery. Unfortunately the answer has been,

for the most part, different for each one of them. For a few it's

involved mold toxin sensitivities, for others it's been antibiotics to

bring chronic systemic infections under control. Some few have been

helped by detoxing heavy metals and other environmental toxins. And

there are a few other specific situations where fixing a particular

thing led to eventual improvement.

However, I'm not aware of any research (or even informal evidence) of

one particular treatment that works for everybody with CFS. I've been

ill about as long as you, off and on, and 10+ years for this most

recent stretch. I think there's some very promising research going on

right now, but science down in the trenches is slower and messier than

we'd like. There's been a " lot* of progress in the last several years,

but it may be another 10 years before it's solidifies into better

understanding and better treatments.

I think the retrovirus XMRV may turn out to be a key player for some

number of CFS cases. The research into that is still in the early

stages, but a retrovirus would explain some of the ways this illness

affects people. Problem is, right now there's no particular treatment

for that retrovirus, and the virus itself is very hard to find. The

debate is still raging over whether or not it's just a lab contaminant

(I don't think it is), and if it's not a contaminant, whether it is a

cause of CFS or just along for the ride.

From what I've read and heard, right now outlook for people who've

been ill for long periods of time isn't great, in terms of recovery. I

wish I could give you better news.

It's like the blind man and the elephant. I've had doctors tell me it

was *definitely* gluten sensitivity, or milk allergy, or mercury

toxins from my fillings, not to mention depression, low thyroid, or

low levels of other hormones. Addressing those things did not make

much difference in the way I feel. And I rather wish I hadn't spent

$8,000 on getting my old fillings replaced by a holistic dentist, but

it seemed the thing to do at the time. Some people have been helped by

that; I wasn't.

I think getting toxins out of the body is a good thing in general. I

am skeptical that it will be a cure. YMMV, of course.

My own best guess is that CFS is a dysregulation of the immune system,

which in turn affects some (or all?) of the body's other systems. It

could be caused by an ongoing retrovirus infection (XMRV or variant of

same), or maybe was caused by something else which is now not around,

but the dysregulation remains. From the well-documented history of

outbreaks in clusters,I think it must involve an infectious component,

*and* some individual susceptibility, either genetic or environmental.

If it were me, I'd opt for extensive blood tests for pathogens (in

addition to EBV) and cytokine levels. If your tests come back positive

for 1/2 doz pathogens, as they do for many of us, and your cytokine

levels are high (as mine are), maybe a doctor might see their way

clear to prescribing you targeted antibiotics to help reduce your

body's overall pathogen load. And if you have to get exercise testing

for disability purposes, make sure to have the " VO2 max " exercise bike

session done twice, one day after the other, because the abnormalities

won't show up on the first session, only on the 2nd session the next

day.

My thoughts are a little scattered, but maybe some of this well help.

Best wishes,

Marcia on

in Salem, Massachusetts

On Apr 29, 2011, at 8:20 PM, wrote:

> I have suffered with CFIDS for almost 18 years. I was diagnosed in

> 1993 with the Epstein-Barr Virus that then turned into a full blown

> syndrome which included fatigue and intolerance to exercise, skin

> rash, diarrhea, stomach pain, muscle aches and spasms, vomiting,

> impaired cognitive ability, and chronic insomnia. I have recently

> also developed an environmental sensitivity to EMF, electronic

> devices, and certain metals which makes my CFS symptoms even worse.

> What is most puzzling is that all my medical tests over the years

> show me to be in perfect health.

>

> I have had a lot of success treating CFS with good nutrition, diet,

> exercise, and rest. However, the progress is very slow, and setbacks

> can put me back in bed at any moment. I am running out of patience

> and have begun looking for a " cure " .

>

> I am just wondering in general what the latest CFS research is

> showing as a possible cause or treatment for this condition. There

> are doctors that want to run expensive tests regarding trace

> minerals, Porphyrins, enzymes, and other things related to " detox "

> and " heavy metals " . Some even want to check me for mercury dental

> fillings. Their general theory seems to be that CFS is caused by an

> overload of toxicity, which can somehow be reversed.

>

> To be honest, I don't hear many good stories from the CFS community

> regarding progress or treatment. I would hate to spend thousands of

> dollars to make this syndrome even worse.

>

> Is there anyone here who has successfully treated or cured CFIDS

> through a doctor or clinic? Is this just a wild goose chase that is

> going to cause me more suffering?

>

> Thanks,

> Ace

>

>

>

[Guest guest]

Some people, like me, have been cured. But honestly the process of finding a

cure is a bit of a wild goose chase. We don't all have the same cause so in my

experience, you have to try a lot of things to find the right one. My main

problem turned out to be genetic inability to process mold, but a lot of other

things also contributed such as: mercury from fillings, methylation issues,

genetic propensity to thick bood, weaknesses in my immune system, plus physical

stresses from previous medical issues (excessive use of tylenol over a long

period of time, excessive use of acid blockers for too long, and surgeries). In

my case many of the things I tried helped " some " but I was still quite sick. It

was the mold issue that took me from rearranging chairs on the titanic to

actually un-sinking the ship. Not sure if fixing all those previous things were

necessary or not, but my doctor thought they kept me from going so far off track

that I couldn't come back. And they all made me healthier in other ways so it's

not like it was wasted.

Doris

Searching for a CFS cure before time runs out...

I have suffered with CFIDS for almost 18 years. I was diagnosed in 1993 with

the Epstein-Barr Virus that then turned into a full blown syndrome which

included fatigue and intolerance to exercise, skin rash, diarrhea, stomach pain,

muscle aches and spasms, vomiting, impaired cognitive ability, and chronic

insomnia. I have recently also developed an environmental sensitivity to EMF,

electronic devices, and certain metals which makes my CFS symptoms even worse.

What is most puzzling is that all my medical tests over the years show me to be

in perfect health.

I have had a lot of success treating CFS with good nutrition, diet, exercise,

and rest. However, the progress is very slow, and setbacks can put me back in

bed at any moment. I am running out of patience and have begun looking for a

" cure " .

I am just wondering in general what the latest CFS research is showing as a

possible cause or treatment for this condition. There are doctors that want to

run expensive tests regarding trace minerals, Porphyrins, enzymes, and other

things related to " detox " and " heavy metals " . Some even want to check me for

mercury dental fillings. Their general theory seems to be that CFS is caused by

an overload of toxicity, which can somehow be reversed.

To be honest, I don't hear many good stories from the CFS community regarding

progress or treatment. I would hate to spend thousands of dollars to make this

syndrome even worse.

Is there anyone here who has successfully treated or cured CFIDS through a

doctor or clinic? Is this just a wild goose chase that is going to cause me more

suffering?

Thanks,

Ace

[Guest guest]

Dear Ace,

I woke at age 34 with " sudden onset " CFS. After two hospital stays I turned

to holistic seminar, where for three days they taught me to detox. There were

50 vitamins a day, and daily coffee enemas.

I recovered 99%---leaving a minor fatigue issue.

15 years ago I opened up my health to toxic materials in

remodeling--menapause, bad eating, and stress. I have been climbing

successfully out of being bedridden for months, to 90% functional.

My path included Dr. Richie Shoemaker (god father of mold illness)--a now

diseased MD in NC, who was ahead of his time, and several other wonderful

integrative MD's----each giving me a step of recovery. I had a major step of

recovery from amalgam removal. I've done it all, with little or some good

results. Three years ago after tracking Dr. Teitlebaum's protocol I became a

patient at the Atlanta FFC. The FFC's follow Dr. T's protocol almost

100%----therefore it is wise to be educated on your own, as to follow ones care.

I had never done the heavy antibiotics or antifungals. I knew it would be a

rough road and prepared for a setback. I endured three months of

setback---fatigue, aches--fevers---and then finally saw the light at the end of

the tunnel!! I know that investment of time and money has given me back my

life---or at least a level that I can be content with at age 64:)

Note I have never read of healing under mainstream medical care. They are

just not up to speed. Dr. T has a staff person, Cheryl, who for $45 a half hour

can consult. She is an amazingly caring person---I recommend a call to her to

every one.

I welcome any private emails---just know I am currently for the next two days

with FOUR grandchildren------I'm pacing as best I can, but reality is, not much

computer time.

God Bless,

Sara

>

> I have suffered with CFIDS for almost 18 years. I was diagnosed in 1993 with

the Epstein-Barr Virus that then turned into a full blown syndrome which

included fatigue and intolerance to exercise, skin rash, diarrhea, stomach pain,

muscle aches and spasms, vomiting, impaired cognitive ability, and chronic

insomnia. I have recently also developed an environmental sensitivity to EMF,

electronic devices, and certain metals which makes my CFS symptoms even worse.

What is most puzzling is that all my medical tests over the years show me to be

in perfect health.

>

> I have had a lot of success treating CFS with good nutrition, diet, exercise,

and rest. However, the progress is very slow, and setbacks can put me back in

bed at any moment. I am running out of patience and have begun looking for a

" cure " .

>

> I am just wondering in general what the latest CFS research is showing as a

possible cause or treatment for this condition. There are doctors that want to

run expensive tests regarding trace minerals, Porphyrins, enzymes, and other

things related to " detox " and " heavy metals " . Some even want to check me for

mercury dental fillings. Their general theory seems to be that CFS is caused by

an overload of toxicity, which can somehow be reversed.

>

> To be honest, I don't hear many good stories from the CFS community regarding

progress or treatment. I would hate to spend thousands of dollars to make this

syndrome even worse.

>

> Is there anyone here who has successfully treated or cured CFIDS through a

doctor or clinic? Is this just a wild goose chase that is going to cause me

more suffering?

>

> Thanks,

> Ace

>

[Guest guest]

Hi, Ace.

I'm sorry to hear of your extended illness and the additional issues that have

appeared recently.

I have researched ME/CFS essentially full-time for the past 15 years and have

been a member of this group for nearly all of that time. I have learned a great

deal from people here, as well as people in other ME/CFS groups on line, and

from the more formal sources, including the published research literature,

conferences, and personal interactions with clinicians and other researchers.

I would say that your perception concerning the scarcity of happy recovery

stories in the ME/CFS community is accurate.

I would also agree with the others here who have commented on the heterogeneity

of causes and individual aspects of this disorder.

I will give you my current views on cause and treatment, based on experience up

to now, for what they are worth.

First, I continue to believe that there is a core mechanism in the

pathophysiology of ME/CFS, involving a vicious circle in the basic biochemistry

of the cells and the body as a whole, and that this vicious circle is what makes

ME/CFS a chronic illness. Based on evidence that I believe is solid, this

vicious circle involves the following features: depletion of glutathione, a

functional deficiency in vitamin B12 that is caused by lack of protection of B12

because of the glutathione depletion, a partial block of the enzyme methionine

synthase in the methylation cycle that is caused by the functional B12

deficiency, draining of folate from the cells that is caused by the partial

block of methionine synthase, and continuing depletion of glutathione, caused by

the dysfunction of the sulfur metabolism, which is also caused by the partial

block of methionine synthase, thus completing and maintaining a vicious circle.

In my view, the other common features of ME/CFS stem from this core vicious

circle process.

When I first came to this view in early 2007, I hoped that breaking up this

vicious circle would bring complete recovery from ME/CFS for everyone who

suffers from it. However, while there have been a small number of what are

reported to be complete recoveries from treatment directed at lifting the

partial block in the methylation cycle, most who have tried it have reported

significant improvement, but not total recovery. Those who have reported

complete recovery have also reported that they did several other types of

treatment before or after the methylation treatment.

So my current view is as follows:

This vicious circle is in fact the central mechanism in the pathophysiology of

ME/CFS. However, there are several different factors that can contribute to

bringing it on initially in individual cases, and there can also be several

issues that develop subsequently in a longstanding case of ME/CFS as a result of

the dysfunction of the immune system and the detoxication system that result

from this central mechanism.

While ridding a person of this vicious circle mechanism will allow their body to

correct many of the abnormalities present in ME/CFS, some of these prior or

subsequently developing issues cannot be corrected by the body itself, even

after the core mechanism has been eliminated, and they must also be treated

specifically. The reason is that the immune system and the detoxication system

are normally " housekeeping " systems, designed to cope with pathogens and toxins

as they are presented to the body in the normal course of living. If these

systems become dysfunctional, as occurs in ME/CFS, it is possible for pathogens

to become entrenched, and for toxins to build up to high levels, and they can

thus present larger challenges than these housekeeping systems are capable of

coping with.

Among these problems that are present in various cases are serious dysbiosis and

dysfunction of the digestive system, toxic mold and other biotoxin illnesses,

Lyme disease and its coinfections, high body burdens of toxic heavy metals,

viral infections, and possibly retroviral infections. There may be others, but

these are the ones for which I believe there is evidence. When these are

present, they must be specifically treated, along with treatment of the partial

methylation cycle block, and thus the vicious circle.

That's where it currently stands, in my opinion.

Best regards,

Rich Van Konynenburg

>

> I have suffered with CFIDS for almost 18 years. I was diagnosed in 1993 with

the Epstein-Barr Virus that then turned into a full blown syndrome which

included fatigue and intolerance to exercise, skin rash, diarrhea, stomach pain,

muscle aches and spasms, vomiting, impaired cognitive ability, and chronic

insomnia. I have recently also developed an environmental sensitivity to EMF,

electronic devices, and certain metals which makes my CFS symptoms even worse.

What is most puzzling is that all my medical tests over the years show me to be

in perfect health.

>

> I have had a lot of success treating CFS with good nutrition, diet, exercise,

and rest. However, the progress is very slow, and setbacks can put me back in

bed at any moment. I am running out of patience and have begun looking for a

" cure " .

>

> I am just wondering in general what the latest CFS research is showing as a

possible cause or treatment for this condition. There are doctors that want to

run expensive tests regarding trace minerals, Porphyrins, enzymes, and other

things related to " detox " and " heavy metals " . Some even want to check me for

mercury dental fillings. Their general theory seems to be that CFS is caused by

an overload of toxicity, which can somehow be reversed.

>

> To be honest, I don't hear many good stories from the CFS community regarding

progress or treatment. I would hate to spend thousands of dollars to make this

syndrome even worse.

>

> Is there anyone here who has successfully treated or cured CFIDS through a

doctor or clinic? Is this just a wild goose chase that is going to cause me

more suffering?

>

> Thanks,

> Ace

>

[Guest guest]

Marcia on wrote:

> There have been a few people who've made a complete, or almost

> complete, or pretty good recovery. Unfortunately the answer has been,

> for the most part, different for each one of them. For a few it's

> involved mold toxin sensitivities, for others it's been antibiotics to

> bring chronic systemic infections under control. Some few have been

> helped by detoxing heavy metals and other environmental toxins. And

> there are a few other specific situations where fixing a particular

> thing led to eventual improvement.

In each one of these cases, the treatment downregulated the NO/ONOO- cycle.

> However, I'm not aware of any research (or even informal evidence) of

> one particular treatment that works for everybody with CFS. I've been

> ill about as long as you, off and on, and 10+ years for this most

> recent stretch. I think there's some very promising research going on

> right now, but science down in the trenches is slower and messier than

> we'd like. There's been a " lot* of progress in the last several years,

> but it may be another 10 years before it's solidifies into better

> understanding and better treatments.

Downregulating the NO/ONOO- cycle does get people better. There are

multiple ways to do it.

Jeri <teewinot13@...>

@>--->---->-------------------<----<---<@

Dr. Pall's NO/ONOO- Theory/Treatment Discussion Group:

TenthParadigmSociety

@>----------<---------->-----------------------<----------<----------<@

The Tenth Paradigm - Dr. Pall's Website for CFS/MCS/FM/ETC.:

http://www.thetenthparadigm.org

@>----------<---------->-----------------------<----------<----------<@

MCS-Florida - For All Chemically Sensitive Floridians

MCS-Florida

[Guest guest]

Had CFS for 18 years. Work full time with allowances (lay down for 15 minutes

every two hours). Intellectual work. Physical work would be a problem.

Spent tons of money experimenting and tried tons of stuff in last 18 years.

What helps the most:

1.- Meditation. Takes stress out! in 20 minutes. I appear to be more tolerant

to the kind w/o mantra. The one with mantra is so incredibly effective but I

seem to use a lot of energy when I do it. So it is hard at this time to keep it

up. But I am experimenting to see what frequency works best for that kind of

meditation.

Non mantra meditation works very well though, and it does not make me any tired.

On the contrary.

2.- Imuplus. Start very slow.

Best Wishes.

Mr Raba.

> >

> > I have suffered with CFIDS for almost 18 years. I was diagnosed in 1993 with

the Epstein-Barr Virus that then turned into a full blown syndrome which

included fatigue and intolerance to exercise, skin rash, diarrhea, stomach pain,

muscle aches and spasms, vomiting, impaired cognitive ability, and chronic

insomnia. I have recently also developed an environmental sensitivity to EMF,

electronic devices, and certain metals which makes my CFS symptoms even worse.

What is most puzzling is that all my medical tests over the years show me to be

in perfect health.

> >

> > I have had a lot of success treating CFS with good nutrition, diet,

exercise, and rest. However, the progress is very slow, and setbacks can put me

back in bed at any moment. I am running out of patience and have begun looking

for a " cure " .

> >

> > I am just wondering in general what the latest CFS research is showing as a

possible cause or treatment for this condition. There are doctors that want to

run expensive tests regarding trace minerals, Porphyrins, enzymes, and other

things related to " detox " and " heavy metals " . Some even want to check me for

mercury dental fillings. Their general theory seems to be that CFS is caused by

an overload of toxicity, which can somehow be reversed.

> >

> > To be honest, I don't hear many good stories from the CFS community

regarding progress or treatment. I would hate to spend thousands of dollars to

make this syndrome even worse.

> >

> > Is there anyone here who has successfully treated or cured CFIDS through a

doctor or clinic? Is this just a wild goose chase that is going to cause me

more suffering?

> >

> > Thanks,

> > Ace

> >

>

[Guest guest]

Do you think all these things should be treated concurrently, or done in steps.

If in steps, what order should they be addressed?

> ...

> Among these problems that are present in various cases are serious dysbiosis

and dysfunction of the digestive system, toxic mold and other biotoxin

illnesses, Lyme disease and its coinfections, high body burdens of toxic heavy

metals, viral infections, and possibly retroviral infections. There may be

others, but these are the ones for which I believe there is evidence. When

these are present, they must be specifically treated, along with treatment of

the partial methylation cycle block, and thus the vicious circle.

>

> That's where it currently stands, in my opinion.

>

> Best regards,

>

> Rich Van Konynenburg

>