Re: New testing and treatment plan needed

[Guest guest]

Get an Igenex western blot for lyme (borrelia), babesia and

bartonella. Borrelia the most important. You probably have lyme.

>

> Hi everyone,

>

> I'm new here and was sent by someone in another cfs discussion group

> I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years ago

by a

> rhuemetologist, and have tried anything and almost everything under the

> sun since then. Naturopaths (4), a homeopath, acupuncturist, a pain

> specialist, 2 or 3 rhuemetologists, and a psychiatrist and I can't

> remember what else.Chiropractic care and daily walks are the only

> things that seem to help. My condition continues to worsen, and I've

run

> out of options with my current doctors. I'm unemployed and on SSD.

>

> As I come back around full circle 7 years after my diagnosis and find

> myself back to square one again- starting all over, I'm doing a lot of

> research and hearing of more and more tests that are being done – not

> to diagnose the fibro/cfs, but the underlying cause, and I'm on

> information overload.

>

> I'm reading and hearing about mitochondrial disorders, metabolic

> disorders, toxic metals in our system, diseases like mono and Epstein

> bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> acid),thyroid, reverse thyroid, adrenal deficiency, hormone imbalance,

> lime disease, endocrine levels etc. as being " possible " causes of our

> illnesses. One of my doctors does muscle testing, one does blood

> testing, and one does saliva testing, and now one wants to do

> scope/tissue biopsy of the stomach - all for the same thing, h-pylori.

>

> My psychiatrist, who specializes in fibro/cfs, even suggested a sperm

> motility test to check for a metabolic disorder - yes, he's on the

cutting

> edge- at least I think! My PCP does not know about that and I can't

find

> anything about it online, so I have not gone through with it.

>

> I've heard the Fibro and Fatigue center does about 30 different blood

> tests- unpleasant, costly, and from what I'm hearing from several

> patients, they are not happy with the results. More comments about

> them, good or bad, would be welcome. I went to the Seattle area office

> seminar last month.Sure, the presentation was polished and they had

> lot's of answers, but I'm not convinced. There must be a middle ground

> between going to a place like that and a regular doctor who knows very

> little or nothing about this illness.

>

> What kind of doctor or specialist is someone starting over supposed to

> go to with all this information and what are we supposed to do- get

> everytest under the sun? I'm wondering if there is a new

" unofficial " list

> compiled by either alternative treatment professionals, or by us

patients,

> of tests that are useful in our diagnosis and treatment, and what is

not.

> I'm gathering more and more information and names of new doctors to

> talk to, but I need to be better informed about what tests and

treatments

> are considered useful or necessary and what are useless.

>

> I'm going to be talking soon a doctor that is a medical doc that treats

> fibro with standard and alternative methods, which interests me as I've

> found naturopathic alone does not work for me. He seems to know

> about many of the things I've mentioned above, but I'm not ready to

jump

> in just yet. I need some direction, please!

>

> Sedanman

> PS- I see this list has very high traffic, and I have very limited

comuter

> use, so my online time is valuable and I'll do my best to keep up with

> your responses - thanks!

>

[Guest guest]

Jill said: You probably have lyme. I would humbly suggest that while it may be

a good idea

to get tested, it's awfully presumptuous to say he " probably " has lyme. He MAY

have it,

but Seattle isn't exactly the lyme capital of the country. His pain, fatigue

and other

symptoms could be due to a wide variety of issues...

> >

> > Hi everyone,

> >

> > I'm new here and was sent by someone in another cfs discussion group

> > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years ago

> by a

> > rhuemetologist, and have tried anything and almost everything under the

> > sun since then. Naturopaths (4), a homeopath, acupuncturist, a pain

> > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I can't

> > remember what else.Chiropractic care and daily walks are the only

> > things that seem to help. My condition continues to worsen, and I've

> run

> > out of options with my current doctors. I'm unemployed and on SSD.

> >

> > As I come back around full circle 7 years after my diagnosis and find

> > myself back to square one again- starting all over, I'm doing a lot of

> > research and hearing of more and more tests that are being done – not

> > to diagnose the fibro/cfs, but the underlying cause, and I'm on

> > information overload.

> >

> > I'm reading and hearing about mitochondrial disorders, metabolic

> > disorders, toxic metals in our system, diseases like mono and Epstein

> > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> > acid),thyroid, reverse thyroid, adrenal deficiency, hormone imbalance,

> > lime disease, endocrine levels etc. as being " possible " causes of our

> > illnesses. One of my doctors does muscle testing, one does blood

> > testing, and one does saliva testing, and now one wants to do

> > scope/tissue biopsy of the stomach - all for the same thing, h-pylori.

> >

> > My psychiatrist, who specializes in fibro/cfs, even suggested a sperm

> > motility test to check for a metabolic disorder - yes, he's on the

> cutting

> > edge- at least I think! My PCP does not know about that and I can't

> find

> > anything about it online, so I have not gone through with it.

> >

> > I've heard the Fibro and Fatigue center does about 30 different blood

> > tests- unpleasant, costly, and from what I'm hearing from several

> > patients, they are not happy with the results. More comments about

> > them, good or bad, would be welcome. I went to the Seattle area office

> > seminar last month.Sure, the presentation was polished and they had

> > lot's of answers, but I'm not convinced. There must be a middle ground

> > between going to a place like that and a regular doctor who knows very

> > little or nothing about this illness.

> >

> > What kind of doctor or specialist is someone starting over supposed to

> > go to with all this information and what are we supposed to do- get

> > everytest under the sun? I'm wondering if there is a new

> " unofficial " list

> > compiled by either alternative treatment professionals, or by us

> patients,

> > of tests that are useful in our diagnosis and treatment, and what is

> not.

> > I'm gathering more and more information and names of new doctors to

> > talk to, but I need to be better informed about what tests and

> treatments

> > are considered useful or necessary and what are useless.

> >

> > I'm going to be talking soon a doctor that is a medical doc that treats

> > fibro with standard and alternative methods, which interests me as I've

> > found naturopathic alone does not work for me. He seems to know

> > about many of the things I've mentioned above, but I'm not ready to

> jump

> > in just yet. I need some direction, please!

> >

> > Sedanman

> > PS- I see this list has very high traffic, and I have very limited

> comuter

> > use, so my online time is valuable and I'll do my best to keep up with

> > your responses - thanks!

> >

>

[Guest guest]

That's what I think, and I say what I think. Others may chime in

differently.

> > >

> > > Hi everyone,

> > >

> > > I'm new here and was sent by someone in another cfs discussion

group

> > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years ago

> > by a

> > > rhuemetologist, and have tried anything and almost everything

under the

> > > sun since then. Naturopaths (4), a homeopath, acupuncturist, a pain

> > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I can't

> > > remember what else.Chiropractic care and daily walks are the only

> > > things that seem to help. My condition continues to worsen, and I've

> > run

> > > out of options with my current doctors. I'm unemployed and on SSD.

> > >

> > > As I come back around full circle 7 years after my diagnosis and

find

> > > myself back to square one again- starting all over, I'm doing a

lot of

> > > research and hearing of more and more tests that are being done

– not

> > > to diagnose the fibro/cfs, but the underlying cause, and I'm on

> > > information overload.

> > >

> > > I'm reading and hearing about mitochondrial disorders, metabolic

> > > disorders, toxic metals in our system, diseases like mono and

Epstein

> > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

imbalance,

> > > lime disease, endocrine levels etc. as being " possible " causes

of our

> > > illnesses. One of my doctors does muscle testing, one does blood

> > > testing, and one does saliva testing, and now one wants to do

> > > scope/tissue biopsy of the stomach - all for the same thing,

h-pylori.

> > >

> > > My psychiatrist, who specializes in fibro/cfs, even suggested a

sperm

> > > motility test to check for a metabolic disorder - yes, he's on the

> > cutting

> > > edge- at least I think! My PCP does not know about that and I can't

> > find

> > > anything about it online, so I have not gone through with it.

> > >

> > > I've heard the Fibro and Fatigue center does about 30 different

blood

> > > tests- unpleasant, costly, and from what I'm hearing from several

> > > patients, they are not happy with the results. More comments about

> > > them, good or bad, would be welcome. I went to the Seattle area

office

> > > seminar last month.Sure, the presentation was polished and they had

> > > lot's of answers, but I'm not convinced. There must be a middle

ground

> > > between going to a place like that and a regular doctor who

knows very

> > > little or nothing about this illness.

> > >

> > > What kind of doctor or specialist is someone starting over

supposed to

> > > go to with all this information and what are we supposed to do- get

> > > everytest under the sun? I'm wondering if there is a new

> > " unofficial " list

> > > compiled by either alternative treatment professionals, or by us

> > patients,

> > > of tests that are useful in our diagnosis and treatment, and what is

> > not.

> > > I'm gathering more and more information and names of new doctors to

> > > talk to, but I need to be better informed about what tests and

> > treatments

> > > are considered useful or necessary and what are useless.

> > >

> > > I'm going to be talking soon a doctor that is a medical doc that

treats

> > > fibro with standard and alternative methods, which interests me

as I've

> > > found naturopathic alone does not work for me. He seems to know

> > > about many of the things I've mentioned above, but I'm not ready to

> > jump

> > > in just yet. I need some direction, please!

> > >

> > > Sedanman

> > > PS- I see this list has very high traffic, and I have very limited

> > comuter

> > > use, so my online time is valuable and I'll do my best to keep

up with

> > > your responses - thanks!

> > >

> >

>

[Guest guest]

sedanmann wrote:

>Hi everyone,

>

>I'm new here and was sent by someone in another cfs discussion group

>I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years ago by a

>rhuemetologist, and have tried anything and almost everything under the

>sun since then. Naturopaths (4), a homeopath, acupuncturist, a pain

>specialist, 2 or 3 rhuemetologists, and a psychiatrist and I can't

>remember what else.Chiropractic care and daily walks are the only

>things that seem to help. My condition continues to worsen, and I've run

>out of options with my current doctors. I'm unemployed and on SSD.

>

>As I come back around full circle 7 years after my diagnosis and find

>myself back to square one again- starting all over, I'm doing a lot of

>research and hearing of more and more tests that are being done – not

>to diagnose the fibro/cfs, but the underlying cause, and I'm on

>information overload.

>

>I'm reading and hearing about mitochondrial disorders, metabolic

>disorders, toxic metals in our system, diseases like mono and Epstein

>bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

>acid),thyroid, reverse thyroid, adrenal deficiency, hormone imbalance,

>lime disease, endocrine levels etc. as being " possible " causes of our

>illnesses. One of my doctors does muscle testing, one does blood

>testing, and one does saliva testing, and now one wants to do

>scope/tissue biopsy of the stomach - all for the same thing, h-pylori.

>

>My psychiatrist, who specializes in fibro/cfs, even suggested a sperm

>motility test to check for a metabolic disorder - yes, he's on the cutting

>edge- at least I think! My PCP does not know about that and I can't find

>anything about it online, so I have not gone through with it.

>

>I've heard the Fibro and Fatigue center does about 30 different blood

>tests- unpleasant, costly, and from what I'm hearing from several

>patients, they are not happy with the results. More comments about

>them, good or bad, would be welcome. I went to the Seattle area office

>seminar last month.Sure, the presentation was polished and they had

>lot's of answers, but I'm not convinced. There must be a middle ground

>between going to a place like that and a regular doctor who knows very

>little or nothing about this illness.

>

>What kind of doctor or specialist is someone starting over supposed to

>go to with all this information and what are we supposed to do- get

>everytest under the sun? I'm wondering if there is a new " unofficial " list

>compiled by either alternative treatment professionals, or by us patients,

>of tests that are useful in our diagnosis and treatment, and what is not.

>I'm gathering more and more information and names of new doctors to

>talk to, but I need to be better informed about what tests and treatments

>are considered useful or necessary and what are useless.

>

>I'm going to be talking soon a doctor that is a medical doc that treats

>fibro with standard and alternative methods, which interests me as I've

>found naturopathic alone does not work for me. He seems to know

>about many of the things I've mentioned above, but I'm not ready to jump

>in just yet. I need some direction, please!

>

>Sedanman

>PS- I see this list has very high traffic, and I have very limited comuter

>use, so my online time is valuable and I'll do my best to keep up with

>your responses - thanks!

>

>

>

>

>

>

>

>

>

>

>

>

>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]

Jill's advice is right on target. But I have good news. You have an

excellent doctor in Poulsbo - take the ferry from Seattle to

Bainbridge Island and drive up the road. She is Dr. Shlifer.

Call her before everyone else on this board does.

a Carnes

>

> Get an Igenex western blot for lyme (borrelia), babesia and

> bartonella. Borrelia the most important. You probably have lyme.

>

>

> >

> > Hi everyone,

> >

> > I'm new here and was sent by someone in another cfs discussion

group

> > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years

ago

> by a

> > rhuemetologist, and have tried anything and almost everything

under the

> > sun since then. Naturopaths (4), a homeopath, acupuncturist, a

pain

> > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I

can't

> > remember what else.Chiropractic care and daily walks are the only

> > things that seem to help. My condition continues to worsen, and

I've

> run

> > out of options with my current doctors. I'm unemployed and on SSD.

> >

> > As I come back around full circle 7 years after my diagnosis and

find

> > myself back to square one again- starting all over, I'm doing a

lot of

> > research and hearing of more and more tests that are being done –

not

> > to diagnose the fibro/cfs, but the underlying cause, and I'm on

> > information overload.

> >

> > I'm reading and hearing about mitochondrial disorders, metabolic

> > disorders, toxic metals in our system, diseases like mono and

Epstein

> > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

imbalance,

> > lime disease, endocrine levels etc. as being " possible " causes of

our

> > illnesses. One of my doctors does muscle testing, one does blood

> > testing, and one does saliva testing, and now one wants to do

> > scope/tissue biopsy of the stomach - all for the same thing, h-

pylori.

> >

> > My psychiatrist, who specializes in fibro/cfs, even suggested a

sperm

> > motility test to check for a metabolic disorder - yes, he's on the

> cutting

> > edge- at least I think! My PCP does not know about that and I

can't

> find

> > anything about it online, so I have not gone through with it.

> >

> > I've heard the Fibro and Fatigue center does about 30 different

blood

> > tests- unpleasant, costly, and from what I'm hearing from several

> > patients, they are not happy with the results. More comments

about

> > them, good or bad, would be welcome. I went to the Seattle area

office

> > seminar last month.Sure, the presentation was polished and they

had

> > lot's of answers, but I'm not convinced. There must be a middle

ground

> > between going to a place like that and a regular doctor who knows

very

> > little or nothing about this illness.

> >

> > What kind of doctor or specialist is someone starting over

supposed to

> > go to with all this information and what are we supposed to do-

get

> > everytest under the sun? I'm wondering if there is a new

> " unofficial " list

> > compiled by either alternative treatment professionals, or by us

> patients,

> > of tests that are useful in our diagnosis and treatment, and what

is

> not.

> > I'm gathering more and more information and names of new doctors

to

> > talk to, but I need to be better informed about what tests and

> treatments

> > are considered useful or necessary and what are useless.

> >

> > I'm going to be talking soon a doctor that is a medical doc that

treats

> > fibro with standard and alternative methods, which interests me

as I've

> > found naturopathic alone does not work for me. He seems to know

> > about many of the things I've mentioned above, but I'm not ready

to

> jump

> > in just yet. I need some direction, please!

> >

> > Sedanman

> > PS- I see this list has very high traffic, and I have very limited

> comuter

> > use, so my online time is valuable and I'll do my best to keep up

with

> > your responses - thanks!

> >

>

[Guest guest]

Hi a,

Yes, I agree -- she's highly recommended, even though she is still following the

MP with

most of her patients. Not that all of them are following it. But that's

for them to

discuss...

I just thought that Jill could've used the word " may " instead of " probably " --

nothing

personal at all.

a -- I didn't know you knew the Seattle area that well!

d.

> > >

> > > Hi everyone,

> > >

> > > I'm new here and was sent by someone in another cfs discussion

> group

> > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years

> ago

> > by a

> > > rhuemetologist, and have tried anything and almost everything

> under the

> > > sun since then. Naturopaths (4), a homeopath, acupuncturist, a

> pain

> > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I

> can't

> > > remember what else.Chiropractic care and daily walks are the only

> > > things that seem to help. My condition continues to worsen, and

> I've

> > run

> > > out of options with my current doctors. I'm unemployed and on SSD.

> > >

> > > As I come back around full circle 7 years after my diagnosis and

> find

> > > myself back to square one again- starting all over, I'm doing a

> lot of

> > > research and hearing of more and more tests that are being done –

> not

> > > to diagnose the fibro/cfs, but the underlying cause, and I'm on

> > > information overload.

> > >

> > > I'm reading and hearing about mitochondrial disorders, metabolic

> > > disorders, toxic metals in our system, diseases like mono and

> Epstein

> > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

> imbalance,

> > > lime disease, endocrine levels etc. as being " possible " causes of

> our

> > > illnesses. One of my doctors does muscle testing, one does blood

> > > testing, and one does saliva testing, and now one wants to do

> > > scope/tissue biopsy of the stomach - all for the same thing, h-

> pylori.

> > >

> > > My psychiatrist, who specializes in fibro/cfs, even suggested a

> sperm

> > > motility test to check for a metabolic disorder - yes, he's on the

> > cutting

> > > edge- at least I think! My PCP does not know about that and I

> can't

> > find

> > > anything about it online, so I have not gone through with it.

> > >

> > > I've heard the Fibro and Fatigue center does about 30 different

> blood

> > > tests- unpleasant, costly, and from what I'm hearing from several

> > > patients, they are not happy with the results. More comments

> about

> > > them, good or bad, would be welcome. I went to the Seattle area

> office

> > > seminar last month.Sure, the presentation was polished and they

> had

> > > lot's of answers, but I'm not convinced. There must be a middle

> ground

> > > between going to a place like that and a regular doctor who knows

> very

> > > little or nothing about this illness.

> > >

> > > What kind of doctor or specialist is someone starting over

> supposed to

> > > go to with all this information and what are we supposed to do-

> get

> > > everytest under the sun? I'm wondering if there is a new

> > " unofficial " list

> > > compiled by either alternative treatment professionals, or by us

> > patients,

> > > of tests that are useful in our diagnosis and treatment, and what

> is

> > not.

> > > I'm gathering more and more information and names of new doctors

> to

> > > talk to, but I need to be better informed about what tests and

> > treatments

> > > are considered useful or necessary and what are useless.

> > >

> > > I'm going to be talking soon a doctor that is a medical doc that

> treats

> > > fibro with standard and alternative methods, which interests me

> as I've

> > > found naturopathic alone does not work for me. He seems to know

> > > about many of the things I've mentioned above, but I'm not ready

> to

> > jump

> > > in just yet. I need some direction, please!

> > >

> > > Sedanman

> > > PS- I see this list has very high traffic, and I have very limited

> > comuter

> > > use, so my online time is valuable and I'll do my best to keep up

> with

> > > your responses - thanks!

> > >

> >

>

[Guest guest]

You're right, I could've used " may " except I believe " probably " . At

least I didn't say " you have. " I really think from his description,

and that he's getting worse (which happens with untreated lyme, slowly

but steadily) and his relative youth when he got it, that it's likely

to be lyme.

> > > >

> > > > Hi everyone,

> > > >

> > > > I'm new here and was sent by someone in another cfs discussion

> > group

> > > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years

> > ago

> > > by a

> > > > rhuemetologist, and have tried anything and almost everything

> > under the

> > > > sun since then. Naturopaths (4), a homeopath, acupuncturist, a

> > pain

> > > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I

> > can't

> > > > remember what else.Chiropractic care and daily walks are the only

> > > > things that seem to help. My condition continues to worsen, and

> > I've

> > > run

> > > > out of options with my current doctors. I'm unemployed and on SSD.

> > > >

> > > > As I come back around full circle 7 years after my diagnosis and

> > find

> > > > myself back to square one again- starting all over, I'm doing a

> > lot of

> > > > research and hearing of more and more tests that are being done –

> > not

> > > > to diagnose the fibro/cfs, but the underlying cause, and I'm on

> > > > information overload.

> > > >

> > > > I'm reading and hearing about mitochondrial disorders, metabolic

> > > > disorders, toxic metals in our system, diseases like mono and

> > Epstein

> > > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> > > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

> > imbalance,

> > > > lime disease, endocrine levels etc. as being " possible " causes of

> > our

> > > > illnesses. One of my doctors does muscle testing, one does blood

> > > > testing, and one does saliva testing, and now one wants to do

> > > > scope/tissue biopsy of the stomach - all for the same thing, h-

> > pylori.

> > > >

> > > > My psychiatrist, who specializes in fibro/cfs, even suggested a

> > sperm

> > > > motility test to check for a metabolic disorder - yes, he's on the

> > > cutting

> > > > edge- at least I think! My PCP does not know about that and I

> > can't

> > > find

> > > > anything about it online, so I have not gone through with it.

> > > >

> > > > I've heard the Fibro and Fatigue center does about 30 different

> > blood

> > > > tests- unpleasant, costly, and from what I'm hearing from several

> > > > patients, they are not happy with the results. More comments

> > about

> > > > them, good or bad, would be welcome. I went to the Seattle area

> > office

> > > > seminar last month.Sure, the presentation was polished and they

> > had

> > > > lot's of answers, but I'm not convinced. There must be a middle

> > ground

> > > > between going to a place like that and a regular doctor who knows

> > very

> > > > little or nothing about this illness.

> > > >

> > > > What kind of doctor or specialist is someone starting over

> > supposed to

> > > > go to with all this information and what are we supposed to do-

> > get

> > > > everytest under the sun? I'm wondering if there is a new

> > > " unofficial " list

> > > > compiled by either alternative treatment professionals, or by us

> > > patients,

> > > > of tests that are useful in our diagnosis and treatment, and what

> > is

> > > not.

> > > > I'm gathering more and more information and names of new doctors

> > to

> > > > talk to, but I need to be better informed about what tests and

> > > treatments

> > > > are considered useful or necessary and what are useless.

> > > >

> > > > I'm going to be talking soon a doctor that is a medical doc that

> > treats

> > > > fibro with standard and alternative methods, which interests me

> > as I've

> > > > found naturopathic alone does not work for me. He seems to know

> > > > about many of the things I've mentioned above, but I'm not ready

> > to

> > > jump

> > > > in just yet. I need some direction, please!

> > > >

> > > > Sedanman

> > > > PS- I see this list has very high traffic, and I have very limited

> > > comuter

> > > > use, so my online time is valuable and I'll do my best to keep up

> > with

> > > > your responses - thanks!

> > > >

> > >

> >

>

[Guest guest]

Shlilfer is smart and will watch for problems with the protocol. She

is not a fanatic either. There is also a very good doctor in

Vancouver, BC.

My one son lived on Bainbridge Island and my older son lives in

Vancouver, BC, so I am fairly familiar with the area.

a

>

> Hi a,

>

> Yes, I agree -- she's highly recommended, even though she is still

following the MP with

> most of her patients. Not that all of them are following it.

But that's for them to

> discuss...

>

> I just thought that Jill could've used the word " may " instead

of " probably " -- nothing

> personal at all.

>

> a -- I didn't know you knew the Seattle area that well!

>

> d.

>

>

>

>

>

> > > >

> > > > Hi everyone,

> > > >

> > > > I'm new here and was sent by someone in another cfs

discussion

> > group

> > > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7

years

> > ago

> > > by a

> > > > rhuemetologist, and have tried anything and almost everything

> > under the

> > > > sun since then. Naturopaths (4), a homeopath, acupuncturist,

a

> > pain

> > > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I

> > can't

> > > > remember what else.Chiropractic care and daily walks are the

only

> > > > things that seem to help. My condition continues to worsen,

and

> > I've

> > > run

> > > > out of options with my current doctors. I'm unemployed and on

SSD.

> > > >

> > > > As I come back around full circle 7 years after my diagnosis

and

> > find

> > > > myself back to square one again- starting all over, I'm doing

a

> > lot of

> > > > research and hearing of more and more tests that are being

done –

> > not

> > > > to diagnose the fibro/cfs, but the underlying cause, and I'm

on

> > > > information overload.

> > > >

> > > > I'm reading and hearing about mitochondrial disorders,

metabolic

> > > > disorders, toxic metals in our system, diseases like mono and

> > Epstein

> > > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of

stomach

> > > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

> > imbalance,

> > > > lime disease, endocrine levels etc. as being " possible "

causes of

> > our

> > > > illnesses. One of my doctors does muscle testing, one does

blood

> > > > testing, and one does saliva testing, and now one wants to do

> > > > scope/tissue biopsy of the stomach - all for the same thing,

h-

> > pylori.

> > > >

> > > > My psychiatrist, who specializes in fibro/cfs, even suggested

a

> > sperm

> > > > motility test to check for a metabolic disorder - yes, he's

on the

> > > cutting

> > > > edge- at least I think! My PCP does not know about that and I

> > can't

> > > find

> > > > anything about it online, so I have not gone through with it.

> > > >

> > > > I've heard the Fibro and Fatigue center does about 30

different

> > blood

> > > > tests- unpleasant, costly, and from what I'm hearing from

several

> > > > patients, they are not happy with the results. More comments

> > about

> > > > them, good or bad, would be welcome. I went to the Seattle

area

> > office

> > > > seminar last month.Sure, the presentation was polished and

they

> > had

> > > > lot's of answers, but I'm not convinced. There must be a

middle

> > ground

> > > > between going to a place like that and a regular doctor who

knows

> > very

> > > > little or nothing about this illness.

> > > >

> > > > What kind of doctor or specialist is someone starting over

> > supposed to

> > > > go to with all this information and what are we supposed to

do-

> > get

> > > > everytest under the sun? I'm wondering if there is a new

> > > " unofficial " list

> > > > compiled by either alternative treatment professionals, or by

us

> > > patients,

> > > > of tests that are useful in our diagnosis and treatment, and

what

> > is

> > > not.

> > > > I'm gathering more and more information and names of new

doctors

> > to

> > > > talk to, but I need to be better informed about what tests and

> > > treatments

> > > > are considered useful or necessary and what are useless.

> > > >

> > > > I'm going to be talking soon a doctor that is a medical doc

that

> > treats

> > > > fibro with standard and alternative methods, which interests

me

> > as I've

> > > > found naturopathic alone does not work for me. He seems to

know

> > > > about many of the things I've mentioned above, but I'm not

ready

> > to

> > > jump

> > > > in just yet. I need some direction, please!

> > > >

> > > > Sedanman

> > > > PS- I see this list has very high traffic, and I have very

limited

> > > comuter

> > > > use, so my online time is valuable and I'll do my best to

keep up

> > with

> > > > your responses - thanks!

> > > >

> > >

> >

>

[Guest guest]

I'm trying to keep up with all the responses- thanks everyone! " MP " -

military police? Medical plan???? )

, " kdrbrill " <kdrbrill@y...> wrote:

>

> Hi a,

>

> Yes, I agree -- she's highly recommended, even though she is still

following the MP with

> most of her patients. Not that all of them are following it. But

that's for them to

> discuss...

>

> I just thought that Jill could've used the word " may " instead

of " probably " -- nothing

> personal at all.

>

> a -- I didn't know you knew the Seattle area that well!

>

> d.

>

>

>

>

>

> > > >

> > > > Hi everyone,

> > > >

> > > > I'm new here and was sent by someone in another cfs

discussion

> > group

> > > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years

> > ago

> > > by a

> > > > rhuemetologist, and have tried anything and almost everything

> > under the

> > > > sun since then. Naturopaths (4), a homeopath, acupuncturist, a

> > pain

> > > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I

> > can't

> > > > remember what else.Chiropractic care and daily walks are the

only

> > > > things that seem to help. My condition continues to worsen,

and

> > I've

> > > run

> > > > out of options with my current doctors. I'm unemployed and on

SSD.

> > > >

> > > > As I come back around full circle 7 years after my diagnosis

and

> > find

> > > > myself back to square one again- starting all over, I'm doing a

> > lot of

> > > > research and hearing of more and more tests that are being

done –

> > not

> > > > to diagnose the fibro/cfs, but the underlying cause, and I'm on

> > > > information overload.

> > > >

> > > > I'm reading and hearing about mitochondrial disorders,

metabolic

> > > > disorders, toxic metals in our system, diseases like mono and

> > Epstein

> > > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> > > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

> > imbalance,

> > > > lime disease, endocrine levels etc. as being " possible " causes

of

> > our

> > > > illnesses. One of my doctors does muscle testing, one does

blood

> > > > testing, and one does saliva testing, and now one wants to do

> > > > scope/tissue biopsy of the stomach - all for the same thing, h-

> > pylori.

> > > >

> > > > My psychiatrist, who specializes in fibro/cfs, even suggested a

> > sperm

> > > > motility test to check for a metabolic disorder - yes, he's on the

> > > cutting

> > > > edge- at least I think! My PCP does not know about that and I

> > can't

> > > find

> > > > anything about it online, so I have not gone through with it.

> > > >

> > > > I've heard the Fibro and Fatigue center does about 30 different

> > blood

> > > > tests- unpleasant, costly, and from what I'm hearing from

several

> > > > patients, they are not happy with the results. More comments

> > about

> > > > them, good or bad, would be welcome. I went to the Seattle

area

> > office

> > > > seminar last month.Sure, the presentation was polished and

they

> > had

> > > > lot's of answers, but I'm not convinced. There must be a middle

> > ground

> > > > between going to a place like that and a regular doctor who

knows

> > very

> > > > little or nothing about this illness.

> > > >

> > > > What kind of doctor or specialist is someone starting over

> > supposed to

> > > > go to with all this information and what are we supposed to do-

> > get

> > > > everytest under the sun? I'm wondering if there is a new

> > > " unofficial " list

> > > > compiled by either alternative treatment professionals, or by us

> > > patients,

> > > > of tests that are useful in our diagnosis and treatment, and what

> > is

> > > not.

> > > > I'm gathering more and more information and names of new

doctors

> > to

> > > > talk to, but I need to be better informed about what tests and

> > > treatments

> > > > are considered useful or necessary and what are useless.

> > > >

> > > > I'm going to be talking soon a doctor that is a medical doc that

> > treats

> > > > fibro with standard and alternative methods, which interests me

> > as I've

> > > > found naturopathic alone does not work for me. He seems to

know

> > > > about many of the things I've mentioned above, but I'm not

ready

> > to

> > > jump

> > > > in just yet. I need some direction, please!

> > > >

> > > > Sedanman

> > > > PS- I see this list has very high traffic, and I have very limited

> > > comuter

> > > > use, so my online time is valuable and I'll do my best to keep

up

> > with

> > > > your responses - thanks!

> > > >

> > >

> >

>

[Guest guest]

One thing I did not mention- my mom has Fibromyalgia too. Lyme does

not run in the family, does it? I know one person with lyme and she has

not gotten worse and she is in her late 70's- just goes through bad phases.

>

> You're right, I could've used " may " except I believe " probably " . At

> least I didn't say " you have. " I really think from his description,

> and that he's getting worse (which happens with untreated lyme, slowly

> but steadily) and his relative youth when he got it, that it's likely

> to be lyme.

>

CHOP!!!!

[Guest guest]

by " protocol " , do you mean treatment?

> > > > >

> > > > > Hi everyone,

> > > > >

> > > > > I'm new here and was sent by someone in another cfs

> discussion

> > > group

> > > > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7

> years

> > > ago

> > > > by a

> > > > > rhuemetologist, and have tried anything and almost everything

> > > under the

> > > > > sun since then. Naturopaths (4), a homeopath, acupuncturist,

> a

> > > pain

> > > > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and I

> > > can't

> > > > > remember what else.Chiropractic care and daily walks are the

> only

> > > > > things that seem to help. My condition continues to worsen,

> and

> > > I've

> > > > run

> > > > > out of options with my current doctors. I'm unemployed and

on

> SSD.

> > > > >

> > > > > As I come back around full circle 7 years after my diagnosis

> and

> > > find

> > > > > myself back to square one again- starting all over, I'm doing

> a

> > > lot of

> > > > > research and hearing of more and more tests that are being

> done –

> > > not

> > > > > to diagnose the fibro/cfs, but the underlying cause, and I'm

> on

> > > > > information overload.

> > > > >

> > > > > I'm reading and hearing about mitochondrial disorders,

> metabolic

> > > > > disorders, toxic metals in our system, diseases like mono

and

> > > Epstein

> > > > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of

> stomach

> > > > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

> > > imbalance,

> > > > > lime disease, endocrine levels etc. as being " possible "

> causes of

> > > our

> > > > > illnesses. One of my doctors does muscle testing, one does

> blood

> > > > > testing, and one does saliva testing, and now one wants to do

> > > > > scope/tissue biopsy of the stomach - all for the same thing,

> h-

> > > pylori.

> > > > >

> > > > > My psychiatrist, who specializes in fibro/cfs, even suggested

> a

> > > sperm

> > > > > motility test to check for a metabolic disorder - yes, he's

> on the

> > > > cutting

> > > > > edge- at least I think! My PCP does not know about that and I

> > > can't

> > > > find

> > > > > anything about it online, so I have not gone through with it.

> > > > >

> > > > > I've heard the Fibro and Fatigue center does about 30

> different

> > > blood

> > > > > tests- unpleasant, costly, and from what I'm hearing from

> several

> > > > > patients, they are not happy with the results. More comments

> > > about

> > > > > them, good or bad, would be welcome. I went to the Seattle

> area

> > > office

> > > > > seminar last month.Sure, the presentation was polished and

> they

> > > had

> > > > > lot's of answers, but I'm not convinced. There must be a

> middle

> > > ground

> > > > > between going to a place like that and a regular doctor who

> knows

> > > very

> > > > > little or nothing about this illness.

> > > > >

> > > > > What kind of doctor or specialist is someone starting over

> > > supposed to

> > > > > go to with all this information and what are we supposed to

> do-

> > > get

> > > > > everytest under the sun? I'm wondering if there is a new

> > > > " unofficial " list

> > > > > compiled by either alternative treatment professionals, or by

> us

> > > > patients,

> > > > > of tests that are useful in our diagnosis and treatment, and

> what

> > > is

> > > > not.

> > > > > I'm gathering more and more information and names of new

> doctors

> > > to

> > > > > talk to, but I need to be better informed about what tests and

> > > > treatments

> > > > > are considered useful or necessary and what are useless.

> > > > >

> > > > > I'm going to be talking soon a doctor that is a medical doc

> that

> > > treats

> > > > > fibro with standard and alternative methods, which interests

> me

> > > as I've

> > > > > found naturopathic alone does not work for me. He seems to

> know

> > > > > about many of the things I've mentioned above, but I'm not

> ready

> > > to

> > > > jump

> > > > > in just yet. I need some direction, please!

> > > > >

> > > > > Sedanman

> > > > > PS- I see this list has very high traffic, and I have very

> limited

> > > > comuter

> > > > > use, so my online time is valuable and I'll do my best to

> keep up

> > > with

> > > > > your responses - thanks!

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Have you gotten any benefit from any nutritional supplements?

For your fibro, have you tried guaifenesin? Some people respond to

this. I just started trying it and I think it helps...pretty cheap

and easy to give it a try (over the counter as " expectorant " ).

Who wants to do a scope for h. pylori? If you don't have major

gut/esophagus symptoms, that sounds like overkill. I think you can

test for this with a simple stool sample kit. Diagnos-Techs has

a " GI Health Panel " that tests for some parasites as well as H.

pylori antibodies for about $240. 800-878-3787.

And yeah, you " may " have Lyme:

www.lymenet.org

If you've had it for a while, it may take some antibiotics to help

get a positive test result.

You didn't say what led to the FM diagnosis. Did anything start your

decline originally, like an illness or an injury? Sometimes that

provides a clue...

I thought mito or meta disorders were usually diagnosed earlier in

life, and if you had one of those you probably wouldn't have gotten

to 30 before an FM diagnosis, but I don't know much about

that...What's the sperm test? Kinda sounds like fun...

>

> Hi everyone,

>

> I'm new here and was sent by someone in another cfs discussion

group

> I'm in. I " m a 37 y/o male that was diagnosed with fibro 7 years ago

by a

> rhuemetologist, and have tried anything and almost everything under

the

> sun since then. Naturopaths (4), a homeopath, acupuncturist, a pain

> specialist, 2 or 3 rhuemetologists, and a psychiatrist and I can't

> remember what else.Chiropractic care and daily walks are the only

> things that seem to help. My condition continues to worsen, and

I've run

> out of options with my current doctors. I'm unemployed and on SSD.

>

> As I come back around full circle 7 years after my diagnosis and

find

> myself back to square one again- starting all over, I'm doing a lot

of

> research and hearing of more and more tests that are being done –

not

> to diagnose the fibro/cfs, but the underlying cause, and I'm on

> information overload.

>

> I'm reading and hearing about mitochondrial disorders, metabolic

> disorders, toxic metals in our system, diseases like mono and

Epstein

> bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> acid),thyroid, reverse thyroid, adrenal deficiency, hormone

imbalance,

> lime disease, endocrine levels etc. as being " possible " causes of

our

> illnesses. One of my doctors does muscle testing, one does blood

> testing, and one does saliva testing, and now one wants to do

> scope/tissue biopsy of the stomach - all for the same thing, h-

pylori.

>

> My psychiatrist, who specializes in fibro/cfs, even suggested a

sperm

> motility test to check for a metabolic disorder - yes, he's on the

cutting

> edge- at least I think! My PCP does not know about that and I can't

find

> anything about it online, so I have not gone through with it.

>

> I've heard the Fibro and Fatigue center does about 30 different

blood

> tests- unpleasant, costly, and from what I'm hearing from several

> patients, they are not happy with the results. More comments about

> them, good or bad, would be welcome. I went to the Seattle area

office

> seminar last month.Sure, the presentation was polished and they had

> lot's of answers, but I'm not convinced. There must be a middle

ground

> between going to a place like that and a regular doctor who knows

very

> little or nothing about this illness.

>

> What kind of doctor or specialist is someone starting over supposed

to

> go to with all this information and what are we supposed to do- get

> everytest under the sun? I'm wondering if there is a

new " unofficial " list

> compiled by either alternative treatment professionals, or by us

patients,

> of tests that are useful in our diagnosis and treatment, and what

is not.

> I'm gathering more and more information and names of new doctors to

> talk to, but I need to be better informed about what tests and

treatments

> are considered useful or necessary and what are useless.

>

> I'm going to be talking soon a doctor that is a medical doc that

treats

> fibro with standard and alternative methods, which interests me as

I've

> found naturopathic alone does not work for me. He seems to know

> about many of the things I've mentioned above, but I'm not ready to

jump

> in just yet. I need some direction, please!

>

> Sedanman

> PS- I see this list has very high traffic, and I have very limited

comuter

> use, so my online time is valuable and I'll do my best to keep up

with

> your responses - thanks!

>

[Guest guest]

> sedanmann wrote:

>> I've heard the Fibro and Fatigue center does about 30 different blood

>> tests- unpleasant, costly, and from what I'm hearing from several

>> patients, they are not happy with the results. More comments about

>> them, good or bad, would be welcome. I went to the Seattle area

>> office

>> seminar last month.Sure, the presentation was polished and they had

>> lot's of answers, but I'm not convinced. There must be a middle

>> ground

>> between going to a place like that and a regular doctor who knows

>> very

>> little or nothing about this illness.

I'm a patient at the FFC in LA, and have been very, very happy so far

with my treatment. The tests are expensive, yes; but they also yield

much of the information required to address that long list of " new

issues " you listed:

> I'm reading and hearing about mitochondrial disorders, metabolic

> disorders, toxic metals in our system, diseases like mono and Epstein

> bar, H-pylori, parasites, leaky gut, hypoacidity (lack of stomach

> acid),thyroid, reverse thyroid, adrenal deficiency, hormone imbalance,

> lime disease, endocrine levels etc. as being " possible " causes of our

> illnesses.

The more I read on this list about these issues, the more I realize

that the treatment I'm getting from FFC really does target these core

issues in a very simple, straightforward way. I got four hormones,

four supplements, and one weekly (now twice-weekly) injection that

between them address almost everything you've noted here.

Given how much time and money I've wasted barking up wrong trees over

the past 15 years or so, I feel like I'm operating at a whole new

level of medical skill and efficiency here.

As for " unpleasant: " One morning of fasting, one detour from the

doctor's office to the lab, 15 vials of blood, 10 minutes. Not

something I'd want to do every day for fun, but it hardly ruined my

afternoon.

>> What kind of doctor or specialist is someone starting over

>> supposed to

>> go to with all this information and what are we supposed to do- get

>> everytest under the sun? I'm wondering if there is a new

>> " unofficial " list

>> compiled by either alternative treatment professionals, or by us

>> patients,

>> of tests that are useful in our diagnosis and treatment, and what

>> is not.

>> I'm gathering more and more information and names of new doctors to

>> talk to, but I need to be better informed about what tests and

>> treatments

>> are considered useful or necessary and what are useless.

That's what FFC is actually trying to do: pare things down to the

most targeted list of tests that will deliver the most information,

and offer a targeted range of treatments that seem to give good

benefit to the widest range of people.

My doc in LA is an endocrinologist by training. He seems to have a

decent grasp of the biochemistry, and the stuff he's given me to try

has, with just one exception, been right on target. I haven't dealt

with the Seattle office (though I may be switching there in the

coming months, since I live a whole lot closer to Seattle than LA),

and am curious to know what you've heard about them. The doc may be

coming from a different background, and thus treat differently.

>> I'm going to be talking soon a doctor that is a medical doc that

>> treats

>> fibro with standard and alternative methods, which interests me as

>> I've

>> found naturopathic alone does not work for me. He seems to know

>> about many of the things I've mentioned above, but I'm not ready

>> to jump

>> in just yet. I need some direction, please!

I saw a doc like this -- Tim Guilford -- in the Bay Area. He gave me

a few things that were quite helpful (NAC, a B6-mag combo, and an

herbal hormone balancer that did wonders for a long time). But I

didn't get the huge energy, sleep, FM, and overall healing

breakthroughs I'm getting with FFC.

Sara

[Guest guest]

On Jan 5, 2006, at 5:26 PM, pjeanneus wrote:

> Shlilfer is smart and will watch for problems with the protocol. She

> is not a fanatic either. There is also a very good doctor in

> Vancouver, BC.

Really? Name, please?

Sara

[Guest guest]

Despite " Dr " a and " Dr " Jill I signed up for the Kerr/Enlander

RNA test. I want to know what my RNA is, if it will help the CFS

community so much the better, especially if they are doing it free.

I commend Dr Kerr and Dr Enlander

So Lo and behold, the requirements of the study (which the " Drs "

above obviously never checked ) were test results from a list of

tests including HHV6,HHV7,EBV,CMV viruses, Borellia (Lymes),

Babettsia and Erhlichia

I think Ken should restrict willynilly medical advice according to

our rules

Barbara

In , " jill1313 " <jenbooks13@h...>

wrote:

>

> You're right, I could've used " may " except I believe " probably " .

At least I didn't say " you have. " I really think from his description,

> and that he's getting worse (which happens with untreated lyme,

slowly but steadily) and his relative youth when he got it, that it's

likely to be lyme.

>

>

> > > > >

> > > > > Hi everyone,

> > > > >

> > > > > I'm new here and was sent by someone in another cfs

discussion

> > > group

> > > > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7

years

> > > ago

> > > > by a

> > > > > rhuemetologist, and have tried anything and almost

everything

> > > under the

> > > > > sun since then. Naturopaths (4), a homeopath,

acupuncturist, a

> > > pain

> > > > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and

I

> > > can't

> > > > > remember what else.Chiropractic care and daily walks are

the only

> > > > > things that seem to help. My condition continues to worsen,

and

> > > I've

> > > > run

> > > > > out of options with my current doctors. I'm unemployed and

on SSD.

> > > > >

> > > > > As I come back around full circle 7 years after my

diagnosis and

> > > find

> > > > > myself back to square one again- starting all over, I'm

doing a

> > > lot of

> > > > > research and hearing of more and more tests that are being

done –

> > > not

> > > > > to diagnose the fibro/cfs, but the underlying cause, and

I'm on

> > > > > information overload.

> > > > >

> > > > > I'm reading and hearing about mitochondrial disorders,

metabolic

> > > > > disorders, toxic metals in our system, diseases like mono

and

> > > Epstein

> > > > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of

stomach

> > > > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

> > > imbalance,

> > > > > lime disease, endocrine levels etc. as being " possible "

causes of

> > > our

> > > > > illnesses. One of my doctors does muscle testing, one does

blood

> > > > > testing, and one does saliva testing, and now one wants to

do

> > > > > scope/tissue biopsy of the stomach - all for the same

thing, h-

> > > pylori.

> > > > >

> > > > > My psychiatrist, who specializes in fibro/cfs, even

suggested a

> > > sperm

> > > > > motility test to check for a metabolic disorder - yes, he's

on the

> > > > cutting

> > > > > edge- at least I think! My PCP does not know about that and

I

> > > can't

> > > > find

> > > > > anything about it online, so I have not gone through with

it.

> > > > >

> > > > > I've heard the Fibro and Fatigue center does about 30

different

> > > blood

> > > > > tests- unpleasant, costly, and from what I'm hearing from

several

> > > > > patients, they are not happy with the results. More

comments

> > > about

> > > > > them, good or bad, would be welcome. I went to the Seattle

area

> > > office

> > > > > seminar last month.Sure, the presentation was polished and

they

> > > had

> > > > > lot's of answers, but I'm not convinced. There must be a

middle

> > > ground

> > > > > between going to a place like that and a regular doctor who

knows

> > > very

> > > > > little or nothing about this illness.

> > > > >

> > > > > What kind of doctor or specialist is someone starting over

> > > supposed to

> > > > > go to with all this information and what are we supposed to

do-

> > > get

> > > > > everytest under the sun? I'm wondering if there is a new

> > > > " unofficial " list

> > > > > compiled by either alternative treatment professionals, or

by us

> > > > patients,

> > > > > of tests that are useful in our diagnosis and treatment,

and what

> > > is

> > > > not.

> > > > > I'm gathering more and more information and names of new

doctors

> > > to

> > > > > talk to, but I need to be better informed about what tests

and

> > > > treatments

> > > > > are considered useful or necessary and what are useless.

> > > > >

> > > > > I'm going to be talking soon a doctor that is a medical doc

that

> > > treats

> > > > > fibro with standard and alternative methods, which

interests me

> > > as I've

> > > > > found naturopathic alone does not work for me. He seems to

know

> > > > > about many of the things I've mentioned above, but I'm not

ready

> > > to

> > > > jump

> > > > > in just yet. I need some direction, please!

> > > > >

> > > > > Sedanman

> > > > > PS- I see this list has very high traffic, and I have very

limited

> > > > comuter

> > > > > use, so my online time is valuable and I'll do my best to

keep up

> > > with

> > > > > your responses - thanks!

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Yes, I was talking about the Marshall Protocol. My main reason for

thinking it is useful is the antibiotics it uses.

Lyme is not genetic. But it is a spirochete much like syphillis, thus

it is sexually transmitted and probably crosses the placenta if the

mother is infected. In our family three of us test positive, but we

lived in the sam area for 25 years and all were bitten by ticks.

There is some suspicion that I was infected before I had my children.

a

>

> by " protocol " , do you mean treatment?

>

>

> > > > > >

> > > > > > Hi everyone,

> > > > > >

> > > > > > I'm new here and was sent by someone in another cfs

> > discussion

> > > > group

> > > > > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7

> > years

> > > > ago

> > > > > by a

> > > > > > rhuemetologist, and have tried anything and almost

everything

> > > > under the

> > > > > > sun since then. Naturopaths (4), a homeopath,

acupuncturist,

> > a

> > > > pain

> > > > > > specialist, 2 or 3 rhuemetologists, and a psychiatrist

and I

> > > > can't

> > > > > > remember what else.Chiropractic care and daily walks are

the

> > only

> > > > > > things that seem to help. My condition continues to

worsen,

> > and

> > > > I've

> > > > > run

> > > > > > out of options with my current doctors. I'm unemployed

and

> on

> > SSD.

> > > > > >

> > > > > > As I come back around full circle 7 years after my

diagnosis

> > and

> > > > find

> > > > > > myself back to square one again- starting all over, I'm

doing

> > a

> > > > lot of

> > > > > > research and hearing of more and more tests that are

being

> > done –

> > > > not

> > > > > > to diagnose the fibro/cfs, but the underlying cause, and

I'm

> > on

> > > > > > information overload.

> > > > > >

> > > > > > I'm reading and hearing about mitochondrial disorders,

> > metabolic

> > > > > > disorders, toxic metals in our system, diseases like mono

> and

> > > > Epstein

> > > > > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of

> > stomach

> > > > > > acid),thyroid, reverse thyroid, adrenal deficiency,

hormone

> > > > imbalance,

> > > > > > lime disease, endocrine levels etc. as being " possible "

> > causes of

> > > > our

> > > > > > illnesses. One of my doctors does muscle testing, one

does

> > blood

> > > > > > testing, and one does saliva testing, and now one wants

to do

> > > > > > scope/tissue biopsy of the stomach - all for the same

thing,

> > h-

> > > > pylori.

> > > > > >

> > > > > > My psychiatrist, who specializes in fibro/cfs, even

suggested

> > a

> > > > sperm

> > > > > > motility test to check for a metabolic disorder - yes,

he's

> > on the

> > > > > cutting

> > > > > > edge- at least I think! My PCP does not know about that

and I

> > > > can't

> > > > > find

> > > > > > anything about it online, so I have not gone through with

it.

> > > > > >

> > > > > > I've heard the Fibro and Fatigue center does about 30

> > different

> > > > blood

> > > > > > tests- unpleasant, costly, and from what I'm hearing from

> > several

> > > > > > patients, they are not happy with the results. More

comments

> > > > about

> > > > > > them, good or bad, would be welcome. I went to the

Seattle

> > area

> > > > office

> > > > > > seminar last month.Sure, the presentation was polished

and

> > they

> > > > had

> > > > > > lot's of answers, but I'm not convinced. There must be a

> > middle

> > > > ground

> > > > > > between going to a place like that and a regular doctor

who

> > knows

> > > > very

> > > > > > little or nothing about this illness.

> > > > > >

> > > > > > What kind of doctor or specialist is someone starting

over

> > > > supposed to

> > > > > > go to with all this information and what are we supposed

to

> > do-

> > > > get

> > > > > > everytest under the sun? I'm wondering if there is a new

> > > > > " unofficial " list

> > > > > > compiled by either alternative treatment professionals,

or by

> > us

> > > > > patients,

> > > > > > of tests that are useful in our diagnosis and treatment,

and

> > what

> > > > is

> > > > > not.

> > > > > > I'm gathering more and more information and names of new

> > doctors

> > > > to

> > > > > > talk to, but I need to be better informed about what

tests and

> > > > > treatments

> > > > > > are considered useful or necessary and what are useless.

> > > > > >

> > > > > > I'm going to be talking soon a doctor that is a medical

doc

> > that

> > > > treats

> > > > > > fibro with standard and alternative methods, which

interests

> > me

> > > > as I've

> > > > > > found naturopathic alone does not work for me. He seems

to

> > know

> > > > > > about many of the things I've mentioned above, but I'm

not

> > ready

> > > > to

> > > > > jump

> > > > > > in just yet. I need some direction, please!

> > > > > >

> > > > > > Sedanman

> > > > > > PS- I see this list has very high traffic, and I have

very

> > limited

> > > > > comuter

> > > > > > use, so my online time is valuable and I'll do my best to

> > keep up

> > > > with

> > > > > > your responses - thanks!

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

a, I do not want to get into a discussion concerning

the MP as that dog has been beat to death. I did want to ask you if

you saw the study on how bad low 25 hydroxy D is which I recently

posted. I am not talking about the abx's but the level of 25 hydroxy D

is being showm that being low is not a good thing.

Bob

[Guest guest]

In a message dated 1/6/2006 8:51:33 PM Eastern Standard Time,

sedanmann@... writes:

Someone asked about GI problems and said the scope was too much

for h-pylori. My syptoms are severe bloating (distention) gas, and

stomach pain under my ribcage. I've tried all the special elimination

diets and several digestive supplments.

keep 'em coming!

Sedanman

Sedanman

THere is a group named The_Stomach that may be helpful to you.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Okay, I know you all mean well but I'm really getting thrown by these

terms getting tossed around! Please explain what a test or treatment is

when suggesting it- thanks ;O) What is RNA?

> > > > > >

> > > > > > Hi everyone,

> > > > > >

> > > > > > I'm new here and was sent by someone in another cfs

> discussion

> > > > group

> > > > > > I'm in. I " m a 37 y/o male that was diagnosed with fibro 7

> years

> > > > ago

> > > > > by a

> > > > > > rhuemetologist, and have tried anything and almost

> everything

> > > > under the

> > > > > > sun since then. Naturopaths (4), a homeopath,

> acupuncturist, a

> > > > pain

> > > > > > specialist, 2 or 3 rhuemetologists, and a psychiatrist and

> I

> > > > can't

> > > > > > remember what else.Chiropractic care and daily walks are

> the only

> > > > > > things that seem to help. My condition continues to

worsen,

> and

> > > > I've

> > > > > run

> > > > > > out of options with my current doctors. I'm unemployed and

> on SSD.

> > > > > >

> > > > > > As I come back around full circle 7 years after my

> diagnosis and

> > > > find

> > > > > > myself back to square one again- starting all over, I'm

> doing a

> > > > lot of

> > > > > > research and hearing of more and more tests that are being

> done –

> > > > not

> > > > > > to diagnose the fibro/cfs, but the underlying cause, and

> I'm on

> > > > > > information overload.

> > > > > >

> > > > > > I'm reading and hearing about mitochondrial disorders,

> metabolic

> > > > > > disorders, toxic metals in our system, diseases like mono

> and

> > > > Epstein

> > > > > > bar, H-pylori, parasites, leaky gut, hypoacidity (lack of

> stomach

> > > > > > acid),thyroid, reverse thyroid, adrenal deficiency, hormone

> > > > imbalance,

> > > > > > lime disease, endocrine levels etc. as being " possible "

> causes of

> > > > our

> > > > > > illnesses. One of my doctors does muscle testing, one

does

> blood

> > > > > > testing, and one does saliva testing, and now one wants to

> do

> > > > > > scope/tissue biopsy of the stomach - all for the same

> thing, h-

> > > > pylori.

> > > > > >

> > > > > > My psychiatrist, who specializes in fibro/cfs, even

> suggested a

> > > > sperm

> > > > > > motility test to check for a metabolic disorder - yes, he's

> on the

> > > > > cutting

> > > > > > edge- at least I think! My PCP does not know about that

and

> I

> > > > can't

> > > > > find

> > > > > > anything about it online, so I have not gone through with

> it.

> > > > > >

> > > > > > I've heard the Fibro and Fatigue center does about 30

> different

> > > > blood

> > > > > > tests- unpleasant, costly, and from what I'm hearing from

> several

> > > > > > patients, they are not happy with the results. More

> comments

> > > > about

> > > > > > them, good or bad, would be welcome. I went to the Seattle

> area

> > > > office

> > > > > > seminar last month.Sure, the presentation was polished

and

> they

> > > > had

> > > > > > lot's of answers, but I'm not convinced. There must be a

> middle

> > > > ground

> > > > > > between going to a place like that and a regular doctor who

> knows

> > > > very

> > > > > > little or nothing about this illness.

> > > > > >

> > > > > > What kind of doctor or specialist is someone starting over

> > > > supposed to

> > > > > > go to with all this information and what are we supposed to

> do-

> > > > get

> > > > > > everytest under the sun? I'm wondering if there is a new

> > > > > " unofficial " list

> > > > > > compiled by either alternative treatment professionals, or

> by us

> > > > > patients,

> > > > > > of tests that are useful in our diagnosis and treatment,

> and what

> > > > is

> > > > > not.

> > > > > > I'm gathering more and more information and names of new

> doctors

> > > > to

> > > > > > talk to, but I need to be better informed about what tests

> and

> > > > > treatments

> > > > > > are considered useful or necessary and what are useless.

> > > > > >

> > > > > > I'm going to be talking soon a doctor that is a medical doc

> that

> > > > treats

> > > > > > fibro with standard and alternative methods, which

> interests me

> > > > as I've

> > > > > > found naturopathic alone does not work for me. He seems

to

> know

> > > > > > about many of the things I've mentioned above, but I'm not

> ready

> > > > to

> > > > > jump

> > > > > > in just yet. I need some direction, please!

> > > > > >

> > > > > > Sedanman

> > > > > > PS- I see this list has very high traffic, and I have very

> limited

> > > > > comuter

> > > > > > use, so my online time is valuable and I'll do my best to

> keep up

> > > > with

> > > > > > your responses - thanks!

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Lyme " runs " in families in terms of, they grow up and live in the same

tick endemic areas, are likely to have been bitten many times or gone

on vacations where they got bit, and not know it unleess they had an

obvious bullseye rash, and may share genetics (HLA subtypes) that

cause them to have more trouble with the organism in terms of

inflammatory response. Although from the research I've seen, the

inflammatory response is ultimately protective in the long run. When

they study mice where they've knocked out genes that would cause an

inflammatory response to lyme, the mice don't get the icky symptoms

but they get much sicker in the end.

You might have your Mom tested too. I would . The best lab is

Igenex, and you'll want a western blot.

> >

> > You're right, I could've used " may " except I believe " probably " . At

> > least I didn't say " you have. " I really think from his description,

> > and that he's getting worse (which happens with untreated lyme, slowly

> > but steadily) and his relative youth when he got it, that it's likely

> > to be lyme.

> >

> CHOP!!!!

>

[Guest guest]

Hi and thanks to all your responses- I've just finally gotten caught up

reading most of them and have a few minutes to respond before the

library closes. I don't remember who said what as I print and read later,

so I'm sorry if my answers are not direct.

Regarding doctors, thanks for the the suggestion, a, of Dr. Shlifer in

Poulsbo. This is more than a bit too far away, though- I am not in

Seattle but east of it. (stopped going to my seattle doc because it was

too much due to my fatigue) But what kind of doc/specialty is she-

rhuemetologist? infectious diseases??? I'm trying to figure out what kind

of doctor to look for- that's my first concern.

My second concern is what tests to have done- and it seem's

unanimous that I should be tested for lyme. The test a talked about

that lasts fived days - I did not realize the testing was that complicated.

Anything else besides borrelia, bebisia, and bartonella? (all sounds like

pasta:O) Someone mentioned a fish test as well (?) Everyone keeps

talking about this Igenex test- do I have to go to this place, or does any

doctor draw the blood and send it to them?

I'll comment back to the person about the FF centers on another post.

Someone asked about GI problems and said the scope was too much

for h-pylori. My syptoms are severe bloating (distention) gas, and

stomach pain under my ribcage. I've tried all the special elimination

diets and several digestive supplments.

To the person that asked about the sperm motility test- my psychiatrist

said that if the the sperm are moving slowly, that could identify and

metabolic problem. After mentioning this to a friend, he said you can

check metabolic function with a blood test, so I'm not sure what the

differance is with this test- I have found nothing on the internet about it.

I think someone asked the history of my illness- I can't say it all in this

short a time but I had a few sypmtoms in childhood- headaches and

neck pain when staying in bed too long, and mild digestive issues. It

really started hitting my in my late teens and early 20's- I was disabled

by 31. Yes, I had a lot of " stress " during that time- very high stress and

the illness itself has continued to cause high stress. The pain came

several years before the fatigue. I'm outta time- thanks for the ideas-

keep 'em coming!

Sedanman

[Guest guest]

Bob wrote: My H. Pylori test consisted of some type of breathing into a

jar? No scope.

>

>

>

> In a message dated 1/6/2006 8:51:33 PM Eastern Standard Time,

> sedanmann@h... writes:

>

> Someone asked about GI problems and said the scope was too much

> for h-pylori

[Guest guest]

Yes, there is both a breath and saliva test for H-P. GI doc said if he see's

uclcers in the scope he will do that next, since blood test was neg.

> >

> >

> >

> > In a message dated 1/6/2006 8:51:33 PM Eastern Standard Time,

> > sedanmann@h... writes:

> >

> > Someone asked about GI problems and said the scope was too much

> > for h-pylori

>