Re: New Mainstream Rheumatologist Doctor -His Cure for CFS

[Guest guest]

Be really wary of Neurontin. It is primarily a seizure drug and can have

some very nasty side effects. My late son, with significant seizure disorder,

was on it for a while about ten years ago. Just be careful and understand

what the risks are.

VIral nerve pain suggests a Herpes family member leading to shingles. The

herb officinalis in tincture form made from the fresh herb is very

helpful in dealing with that virus family. Another option liked by Dr

McCandless is Olive Leaf Extract of a certain kind.

Hope this helps

mjh

" The Basil Book "

_http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/)

Do you think Franco is good??? Will he treat without the antibotics??Do you

think Franco is good??? Will he treat without the antibotics??<WBR>? I am

open. For me, since I have had a virus since 02 which causes me nerv

[Guest guest]

Janet, check around before you take those pharmaceuticals, please.

Do some research; take some " polls " here.

I think people have had varied responses with Neurontin. And ask

about the Plaquenil (hydroxychloroquine) too. I think maybe a

Carnes would have some info for you, but I'm sure there are others as

well.

I hope you feel better soon.

in Champaign IL

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed

to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune

modulator.

> He did tell me this fill affect my folate status and I had just

asked

> the group about that, since that seems to be a problem for me. He

> feels CFS is auto immune. He also discussed quite at length the

> disease known as Sjogren's syndrome.

>

> He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

>

> He took alot of blood work, urine test and told me to come back in

one

> month for the labs and to let him know how I am doing. If I do ok,

he

> is they going to prescribe Plaquenil (hydroxychloroquine)

>

> At this point in my life, if I can be " cured " I will try anything

from

> mainstream to alternative. I have lived with this beast for 25

years.

>

> Has anyone had experience with this drug??? Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back

on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me??? He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!! I wish people would think from A-A when dealing

> with this and stay open.

>

> Thank you all so much for your help.

>

> Janet

> in San Diego

>

[Guest guest]

Janet,

This rheumatologist is treating you as if you had an autoimmune

disease, as you wrote. Plaquinil is often used to treat RA and lupus,

etc. It probably has some effect because it kills things like malaria

and babesia. Trouble is Plaquinil is a very dangerous drug, really an

antibiotic related to quinolones. If it works it is probably working

because it kills infections that cause so-called " autoimmune "

diseases.

Here is a link to the warnings on Plaquinil. If you decide to go

forward with this be sure to see your opthomologist and have him keep

a close watch on your eyesight. Plaquinil has an affinity for eye

tissue and can destroy the eyes. Most Lyme specialists have quit

using it and are using Mepron with Zithromax to treat Babesia instead

as they much safer.

Why don't you go up to Riverside and see Dr. Franco? He is

also a rheumatologist who understands cfs.

http://www.igenex.com/innovations3.htm

a Carnes

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed

to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune

modulator.

> He did tell me this fill affect my folate status and I had just

asked

> the group about that, since that seems to be a problem for me. He

> feels CFS is auto immune. He also discussed quite at length the

> disease known as Sjogren's syndrome.

>

> He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

>

> He took alot of blood work, urine test and told me to come back in

one

> month for the labs and to let him know how I am doing. If I do ok,

he

> is they going to prescribe Plaquenil (hydroxychloroquine)

>

> At this point in my life, if I can be " cured " I will try anything

from

> mainstream to alternative. I have lived with this beast for 25

years.

>

> Has anyone had experience with this drug??? Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back

on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me??? He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!! I wish people would think from A-A when dealing

> with this and stay open.

>

> Thank you all so much for your help.

>

> Janet

> in San Diego

>

[Guest guest]

Hi Janet,

Personally, I'm very wary of taking any of the quinolone family of drugs, of

which

Chloroquine is one. They may cause sponaneous tendon ruptures without ANY

warning.

My tendons, etc., are already weak enough as they are. Perhaps he can suggest a

safer

alternative.

here's more info: http://www.emedicine.com/OPH/topic245.htm

And I may be in the minority, but I don't believe CFS is an autoimmune disease.

I think

that term gets thrown around too loosely. The body may in a way " attack

itself " , but only

in that in some people the bugs may be hiding inside or behind our cells walls,

so it seems

like it's an autoimmune attack. There are so many, many variations of CFS, that

I just don't

think that kind of a blanket statement is accurate.

You might also ask how many folks he's " cured " with this protocol, and if you

could speak

with them personally. He clearly must have some good reputation to have a 5

month

waiting list!

just my two cents,

Dan

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune modulator.

> He did tell me this fill affect my folate status and I had just asked

> the group about that, since that seems to be a problem for me. He

> feels CFS is auto immune. He also discussed quite at length the

> disease known as Sjogren's syndrome.

>

> He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

>

> He took alot of blood work, urine test and told me to come back in one

> month for the labs and to let him know how I am doing. If I do ok, he

> is they going to prescribe Plaquenil (hydroxychloroquine)

>

> At this point in my life, if I can be " cured " I will try anything from

> mainstream to alternative. I have lived with this beast for 25 years.

>

> Has anyone had experience with this drug??? Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me??? He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!! I wish people would think from A-A when dealing

> with this and stay open.

>

> Thank you all so much for your help.

>

> Janet

> in San Diego

>

[Guest guest]

Thanks a for your input. Here's another great link on the dangers of

fluoroquinolone family drugs. Makes one wonder how they ever were approved in

the first

place...

Can someone spell Pharmaceutical Lobbyists?

Here's the link...

http://www.fqresearch.org/levofloxacin.htm

d.

>

> Janet,

> This rheumatologist is treating you as if you had an autoimmune

> disease, as you wrote. Plaquinil is often used to treat RA and lupus,

> etc. It probably has some effect because it kills things like malaria

> and babesia. Trouble is Plaquinil is a very dangerous drug, really an

> antibiotic related to quinolones. If it works it is probably working

> because it kills infections that cause so-called " autoimmune "

> diseases.

>

> Here is a link to the warnings on Plaquinil. If you decide to go

> forward with this be sure to see your opthomologist and have him keep

> a close watch on your eyesight. Plaquinil has an affinity for eye

> tissue and can destroy the eyes. Most Lyme specialists have quit

> using it and are using Mepron with Zithromax to treat Babesia instead

> as they much safer.

>

> Why don't you go up to Riverside and see Dr. Franco? He is

> also a rheumatologist who understands cfs.

>

> http://www.igenex.com/innovations3.htm

>

> a Carnes

>

> >

> > Hi All/Rich,

> >

> > Today I went to a rheumatologist here in San Diego who is suppossed

> to

> > be one of the best. (I had to wait 5 months to get into see him!)

> >

> > This is his cure for CFS:

> >

> > He prescribed Azulfidine EN and says this works as a immune

> modulator.

> > He did tell me this fill affect my folate status and I had just

> asked

> > the group about that, since that seems to be a problem for me. He

> > feels CFS is auto immune. He also discussed quite at length the

> > disease known as Sjogren's syndrome.

> >

> > He also gave me Neurotim (sp) for my nerve pain which I am going to

> > take unless someone here has had real bad results with it.

> >

> > He took alot of blood work, urine test and told me to come back in

> one

> > month for the labs and to let him know how I am doing. If I do ok,

> he

> > is they going to prescribe Plaquenil (hydroxychloroquine)

> >

> > At this point in my life, if I can be " cured " I will try anything

> from

> > mainstream to alternative. I have lived with this beast for 25

> years.

> >

> > Has anyone had experience with this drug??? Any thoughts???.

> >

> > /Rich I would also welcome your feedback.

> >

> > I asked him straight out if he ever had gotten a CFS patient back

> on

> > their feet and he said yes. Keep in mind I don't have alot of the

> > symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

> >

> > Can this protocoll hurt me??? He says it will take about 3 months

> > before I feel a difference.

> >

> > One thing that bugs me where ever I go. Everybody has their own

> > protocoll to try!!! I wish people would think from A-A when dealing

> > with this and stay open.

> >

> > Thank you all so much for your help.

> >

> > Janet

> > in San Diego

> >

>

[Guest guest]

HI a,

YOu know, I have looked at Dr. Franco's website and I was somewhat put off by

the antibotic approach he took. My feeling is that I don't have Lyme. But a,

I don't care who is see, I just want somebody that understands CFS.

Do you think Franco is good??? Will he treat without the antibotics??? I am

open. For me, since I have had a virus since 02 which causes me nerve pain, the

best thing that came of of today was the RX for neurontin.

I agree the guy today is treating it as auto immune. I think he is comfortable

with his protocoll. What do you thiink of his emphasis on Sjogrens Syndrome???

Thank you for all your help,

Janet

in San Diego

pjeanneus <pj7@...> wrote:

Janet,

This rheumatologist is treating you as if you had an autoimmune

disease, as you wrote. Plaquinil is often used to treat RA and lupus,

etc. It probably has some effect because it kills things like malaria

and babesia. Trouble is Plaquinil is a very dangerous drug, really an

antibiotic related to quinolones. If it works it is probably working

because it kills infections that cause so-called " autoimmune "

diseases.

Here is a link to the warnings on Plaquinil. If you decide to go

forward with this be sure to see your opthomologist and have him keep

a close watch on your eyesight. Plaquinil has an affinity for eye

tissue and can destroy the eyes. Most Lyme specialists have quit

using it and are using Mepron with Zithromax to treat Babesia instead

as they much safer.

Why don't you go up to Riverside and see Dr. Franco? He is

also a rheumatologist who understands cfs.

http://www.igenex.com/innovations3.htm

a Carnes

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed

to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune

modulator.

> He did tell me this fill affect my folate status and I had just

asked

> the group about that, since that seems to be a problem for me. He

> feels CFS is auto immune. He also discussed quite at length the

> disease known as Sjogren's syndrome.

>

> He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

>

> He took alot of blood work, urine test and told me to come back in

one

> month for the labs and to let him know how I am doing. If I do ok,

he

> is they going to prescribe Plaquenil (hydroxychloroquine)

>

> At this point in my life, if I can be " cured " I will try anything

from

> mainstream to alternative. I have lived with this beast for 25

years.

>

> Has anyone had experience with this drug??? Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back

on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me??? He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!! I wish people would think from A-A when dealing

> with this and stay open.

>

> Thank you all so much for your help.

>

> Janet

> in San Diego

>

[Guest guest]

Hi a,

I getting the feeling from your email that what was really given to me today

was a antiboitic!!!! Is that right????

I think his theory is that CFS is an auto immune disease and might be one and

the same as Sjogren's Syndrome. Is he just grasping at straws????

Thank you for your help,

Janet

in San Diego

pjeanneus <pj7@...> wrote:

Janet,

This rheumatologist is treating you as if you had an autoimmune

disease, as you wrote. Plaquinil is often used to treat RA and lupus,

etc. It probably has some effect because it kills things like malaria

and babesia. Trouble is Plaquinil is a very dangerous drug, really an

antibiotic related to quinolones. If it works it is probably working

because it kills infections that cause so-called " autoimmune "

diseases.

Here is a link to the warnings on Plaquinil. If you decide to go

forward with this be sure to see your opthomologist and have him keep

a close watch on your eyesight. Plaquinil has an affinity for eye

tissue and can destroy the eyes. Most Lyme specialists have quit

using it and are using Mepron with Zithromax to treat Babesia instead

as they much safer.

Why don't you go up to Riverside and see Dr. Franco? He is

also a rheumatologist who understands cfs.

http://www.igenex.com/innovations3.htm

a Carnes

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed

to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune

modulator.

> He did tell me this fill affect my folate status and I had just

asked

> the group about that, since that seems to be a problem for me. He

> feels CFS is auto immune. He also discussed quite at length the

> disease known as Sjogren's syndrome.

>

> He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

>

> He took alot of blood work, urine test and told me to come back in

one

> month for the labs and to let him know how I am doing. If I do ok,

he

> is they going to prescribe Plaquenil (hydroxychloroquine)

>

> At this point in my life, if I can be " cured " I will try anything

from

> mainstream to alternative. I have lived with this beast for 25

years.

>

> Has anyone had experience with this drug??? Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back

on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me??? He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!! I wish people would think from A-A when dealing

> with this and stay open.

>

> Thank you all so much for your help.

>

> Janet

> in San Diego

>

[Guest guest]

Janet

Azulfindine and Plaquenil, from what i understnd, are used by

Rheumatologists to treat autoimmune diseases like rheumatoid

arthritis and Lupus, etc...

here are links to both on Remedyfind:

azulfidine

http://remedyfind.com/rem.asp?ID=788

plaquenil

http://remedyfind.com/rem.asp?ID=783

Plaquenil is also used by some Lyme Specialists in combonation with

antbiotics like Clarithromycin to kill off the lyme bacteria. the

theory that the LLMD that i saw for using Plaquenil (also called

hydroxychlorquine) is that it alters cellular pH so that the

antibiotics will be able to penetrate the cells and fight the

bacteria where they are hiding.

Plquenil is also an anti-parasitic (protozoan - not sure the

difference) that is used to treat malaria. it also has a side effect

of potentially damaging the eyes so you will need to get a regular

eye exam if you start taking it.

i took Plaquenil plus Biaxin (clarithormycin) for almost a year as

part of the Lyme treatment. i didn't have any eye side effects from

to Plaquenil, but you definitely need to get the eye exams.

one thing the treatment did help with was my bowel problems (IBS),

and also i lost quite a bit of weight - which was good for me because

i had put on about 40 lbs since getting sick.

anyway, i hope this info is helpful. i can't really say whether or

not you should try the treatment or not. i would try and talk to

people who go to this DR and are using his treatments and see how

they feel.

i know how you feel, though. you just want to try something.

thanks

bill

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed

to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune

modulator.

> He did tell me this fill affect my folate status and I had just

asked

> the group about that, since that seems to be a problem for me. He

> feels CFS is auto immune. He also discussed quite at length the

> disease known as Sjogren's syndrome.

>

> He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

>

> He took alot of blood work, urine test and told me to come back in

one

> month for the labs and to let him know how I am doing. If I do ok,

he

> is they going to prescribe Plaquenil (hydroxychloroquine)

>

> At this point in my life, if I can be " cured " I will try anything

from

> mainstream to alternative. I have lived with this beast for 25

years.

>

> Has anyone had experience with this drug??? Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back

on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me??? He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!! I wish people would think from A-A when dealing

> with this and stay open.

>

> Thank you all so much for your help.

>

> Janet

> in San Diego

>

[Guest guest]

Hi Janet,

I wish you the best of luck with the protocol with the

doc in San Diego. Please keep us posted. (Also, if it

ends up helping u-I'm moving to Calif. soon-and might

be willing to try also.)

Not to frighten you-but just want to let u know my

experience with neurontin-the first time I took it for

peripheral neuropathy that was induced by flagyl-it

knocked out my per. neuropathic pain in my toes and

feet in a few days. I took it for a few weeks and then

was fine for a few years.

However, I tried neurontin again-for peripheral

neuropathy that had been induced by steroids-and it

gave me horrible side effects. It seemed to mess with

my hormones and I got horrible cyst acne-especially

all around my mouth (still have scars) and I had never

had acne before in my life.

It also made me very depressed and this is a wide

known side effect of neurontin. (It does work on the

GABA center).

Anyhow, I'm not able to take it because of the above.

However, for other people it has been a godsend

medication. I just wanted u to know my reaction in

case u develop any of the same side effects when on

it so u won't possibly feel crazy. I pray that it will

not bother you and only help u though along with the

other part of the protocol.

Sincerely,

Gena

--- winsomme <winsomme@...> wrote:

> Janet

>

> Azulfindine and Plaquenil, from what i understnd,

> are used by

> Rheumatologists to treat autoimmune diseases like

> rheumatoid

> arthritis and Lupus, etc...

>

> here are links to both on Remedyfind:

>

> azulfidine

>

> http://remedyfind.com/rem.asp?ID=788

>

> plaquenil

>

> http://remedyfind.com/rem.asp?ID=783

>

>

> Plaquenil is also used by some Lyme Specialists in

> combonation with

> antbiotics like Clarithromycin to kill off the lyme

> bacteria. the

> theory that the LLMD that i saw for using Plaquenil

> (also called

> hydroxychlorquine) is that it alters cellular pH so

> that the

> antibiotics will be able to penetrate the cells and

> fight the

> bacteria where they are hiding.

>

> Plquenil is also an anti-parasitic (protozoan - not

> sure the

> difference) that is used to treat malaria. it also

> has a side effect

> of potentially damaging the eyes so you will need to

> get a regular

> eye exam if you start taking it.

>

> i took Plaquenil plus Biaxin (clarithormycin) for

> almost a year as

> part of the Lyme treatment. i didn't have any eye

> side effects from

> to Plaquenil, but you definitely need to get the eye

> exams.

>

> one thing the treatment did help with was my bowel

> problems (IBS),

> and also i lost quite a bit of weight - which was

> good for me because

> i had put on about 40 lbs since getting sick.

>

> anyway, i hope this info is helpful. i can't really

> say whether or

> not you should try the treatment or not. i would try

> and talk to

> people who go to this DR and are using his

> treatments and see how

> they feel.

>

> i know how you feel, though. you just want to try

> something.

>

> thanks

> bill

>

>

>

>

> >

> > Hi All/Rich,

> >

> > Today I went to a rheumatologist here in San Diego

> who is suppossed

> to

> > be one of the best. (I had to wait 5 months to get

> into see him!)

> >

> > This is his cure for CFS:

> >

> > He prescribed Azulfidine EN and says this works as

> a immune

> modulator.

> > He did tell me this fill affect my folate status

> and I had just

> asked

> > the group about that, since that seems to be a

> problem for me. He

> > feels CFS is auto immune. He also discussed quite

> at length the

> > disease known as Sjogren's syndrome.

> >

> > He also gave me Neurotim (sp) for my nerve pain

> which I am going to

> > take unless someone here has had real bad results

> with it.

> >

> > He took alot of blood work, urine test and told me

> to come back in

> one

> > month for the labs and to let him know how I am

> doing. If I do ok,

> he

> > is they going to prescribe Plaquenil

> (hydroxychloroquine)

> >

> > At this point in my life, if I can be " cured " I

> will try anything

> from

> > mainstream to alternative. I have lived with this

> beast for 25

> years.

> >

> > Has anyone had experience with this drug??? Any

> thoughts???.

> >

> > /Rich I would also welcome your feedback.

> >

> > I asked him straight out if he ever had gotten a

> CFS patient back

> on

> > their feet and he said yes. Keep in mind I don't

> have alot of the

> > symptoms associated with Fibro, I have the

> FATIGUE, BIG TIME.

> >

> > Can this protocoll hurt me??? He says it will take

> about 3 months

> > before I feel a difference.

> >

> > One thing that bugs me where ever I go. Everybody

> has their own

> > protocoll to try!!! I wish people would think from

> A-A when dealing

> > with this and stay open.

> >

> > Thank you all so much for your help.

> >

> > Janet

> > in San Diego

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

My doctor has just started me on Luedolin for viruses.

Gail

foxhillers@... wrote:

>

> Be really wary of Neurontin. It is primarily a seizure drug and can have

> some very nasty side effects. My late son, with significant seizure

> disorder,

> was on it for a while about ten years ago. Just be careful and understand

> what the risks are.

>

> VIral nerve pain suggests a Herpes family member leading to shingles. The

> herb officinalis in tincture form made from the fresh herb is

> very

> helpful in dealing with that virus family. Another option liked by Dr

> McCandless is Olive Leaf Extract of a certain kind.

>

> Hope this helps

>

> mjh

> " The Basil Book "

> _http://foxhillfarm. us/FireBasil/ _

> <http://foxhillfarm.us/FireBasil/_> (http://foxhillfarm. us/FireBasil/

> <http://foxhillfarm.us/FireBasil/>)

>

> Do you think Franco is good??? Will he treat without the antibotics??

> Do you

> think Franco is good??? Will he treat without the antibotics?? <WBR>?

> I am

> open. For me, since I have had a virus since 02 which causes me nerv

>

>

[Guest guest]

Sorry that is Luetolin. It is expensive. He is targeting HHV-6

Gail Ilse-Mayberry wrote:

>

> My doctor has just started me on Luedolin for viruses.

> Gail

>

> foxhillersaol (DOT) com <mailto:foxhillers%40aol.com> wrote:

> >

> > Be really wary of Neurontin. It is primarily a seizure drug and can have

> > some very nasty side effects. My late son, with significant seizure

> > disorder,

> > was on it for a while about ten years ago. Just be careful and

> understand

> > what the risks are.

> >

> > VIral nerve pain suggests a Herpes family member leading to

> shingles. The

> > herb officinalis in tincture form made from the fresh herb is

> > very

> > helpful in dealing with that virus family. Another option liked by Dr

> > McCandless is Olive Leaf Extract of a certain kind.

> >

> > Hope this helps

> >

> > mjh

> > " The Basil Book "

> > _http://foxhillfarm. us/FireBasil/ _

> > <http://foxhillfarm. us/FireBasil/ _

> <http://foxhillfarm.us/FireBasil/_>> (http://foxhillfarm. us/FireBasil/

> > <http://foxhillfarm. us/FireBasil/ <http://foxhillfarm.us/FireBasil/>>)

> >

> > Do you think Franco is good??? Will he treat without the antibotics??

> > Do you

> > think Franco is good??? Will he treat without the antibotics?? <WBR>?

> > I am

> > open. For me, since I have had a virus since 02 which causes me nerv

> >

> >

[Guest guest]

i think it is actually Luteolin.

here is a link i found:

http://www.raysahelian.com/luteolin.html

thanks

bill

> > >

> > > Be really wary of Neurontin. It is primarily a seizure drug and

can have

> > > some very nasty side effects. My late son, with significant

seizure

> > > disorder,

> > > was on it for a while about ten years ago. Just be careful and

> > understand

> > > what the risks are.

> > >

> > > VIral nerve pain suggests a Herpes family member leading to

> > shingles. The

> > > herb officinalis in tincture form made from the fresh

herb is

> > > very

> > > helpful in dealing with that virus family. Another option liked

by Dr

> > > McCandless is Olive Leaf Extract of a certain kind.

> > >

> > > Hope this helps

> > >

> > > mjh

> > > " The Basil Book "

> > > _http://foxhillfarm. us/FireBasil/ _

> > > <http://foxhillfarm. us/FireBasil/ _

> > <http://foxhillfarm.us/FireBasil/_>> (http://foxhillfarm.

us/FireBasil/

> > > <http://foxhillfarm. us/FireBasil/

<http://foxhillfarm.us/FireBasil/>>)

> > >

> > > Do you think Franco is good??? Will he treat without the

antibotics??

> > > Do you

> > > think Franco is good??? Will he treat without the antibotics??

<WBR>?

> > > I am

> > > open. For me, since I have had a virus since 02 which causes me

nerv

> > >

> > >

[Guest guest]

Gena

THe healthiest years of my life were when I was eating Pesto Genovese at

least five times a week for years.

I had high titres of EB and CMV, never tested for HHV-6

GOt those critters under control with homemade lemon balm tincture (

officinalis)

Also v low Mg - took care of that with Milk of Magnesia and B6

Potassium dealt with via bananas and orange juice.

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Hi Bill and everyone out there,

I just noticed your thread about the Luteolin and the

thought that it may be being used for HHV-6.

Does anyone know if Luteolin had helped anyone with

HHV-6?

I am a sufferer of fibromyalgia/cfs for seventeen

years. (A severe -debilitating case)

I am presently seeing a doc who found several things

wrong:

high crp-12/

high angiotensin II/

d-dimer/fibrogen/fibrin/

low potassium/low magnesium

anemia/

very low Growth Hormome (level of an

eighty year old)/

very low normal dhea/

very low normal

pregnenelone/

super high HHV-6 count (around 165 I think-and

currently ACTIVE/

high Epstein-Barr/

High CMV-

I also tested positive for mycoplasma

fermentes/hominis about six years ago and antibiotic

treatment didn't help-

and was diagnosed with chronic lyme but three more

years of antibiotics only made me worse-

Currently-I have tried heparin shots for the

fibrin/fibrogen hypercoagulation prob. but I just felt

worse on it. Also, my neutrophils quadrupled after

only a few weeks on it. And I believe the heparin was

causing that and assume it's not good -so have given

heparin a break.

I tried an enzyme supp. he offered but had a very bad

brain reaction to it-sudden

irritation-anger-depression-so can't take that.

I am taking iron now for the anemia.

I haven't been able to tolerate a magnesium/potassium

supplement-it makes me real sick with-joint pain

everywhere-worsening of fibro muscle pain and

endometiosis flare attacks.

I have had some up and down success with DHEA.

It has given me a normal sleep cycle and some good

days for the first time in seventeen years where I

have much more energy and less pain.

However, it isn't always consistent and I have had

some break through peripheral neuropathy at times as a

side effect with it (though not lately) and am trying

to take it only three times a week because it really

works-when I got my blood back my dhea went from low

levels to over high levels.

I also was given naturally compounded thyroid

medication for supposed hyperthyroid-though actually,

when I look at my test myself-I look like I might be

heading more towards hyperthyroid. However, my

symptoms and weight lead much more towards hypo.

Anyhow, when I first tried the thyroid med it made me

crash horribly. It magnified my fibro pain hugely and

my extreme fatigue became like someone had just fed me

anesthesia and I passed out for awhile.

However, after being on the DHEA for awhile-I have

been trying the thyroid again all this week and am

getting some improvement with it already-mainly with

quite a bit more energy which I never have. I'm still

being cautious and watching for side effects.

When I go back to my doc I'm going to have a heart

stress test and he is going to talk to me about

treating my HHV-6 with anti-virals-he said it was

important that my hormones were right though.

My big question is: has anyone out there on this list

tested positive for a high HHV-6 count? And, if so,

have any of you tried anti-virals for it?

I've done some research on it and realize it may be

difficult to treat and that the only real promising

way is to use the strong anti-viral by i.v. called

ganclivor (spelling?) that can have really bad side

effects.

I was wondering if valtrex could at least help some .

Also, I've heard the anti-virals can be hard on your

liver?

Sorry about the very long e-mail but I'm still fairly

new and have never posted what was really going on

with me.

I really have learned from this list already and am

very appreciative of everyone on the list and the

information and support they provide.

Take care.

Gena

--- winsomme <winsomme@...> wrote:

> i think it is actually Luteolin.

>

> here is a link i found:

>

> http://www.raysahelian.com/luteolin.html

>

> thanks

> bill

>

>

>

> > > >

> > > > Be really wary of Neurontin. It is primarily a

> seizure drug and

> can have

> > > > some very nasty side effects. My late son,

> with significant

> seizure

> > > > disorder,

> > > > was on it for a while about ten years ago.

> Just be careful and

> > > understand

> > > > what the risks are.

> > > >

> > > > VIral nerve pain suggests a Herpes family

> member leading to

> > > shingles. The

> > > > herb officinalis in tincture form made

> from the fresh

> herb is

> > > > very

> > > > helpful in dealing with that virus family.

> Another option liked

> by Dr

> > > > McCandless is Olive Leaf Extract of a certain

> kind.

> > > >

> > > > Hope this helps

> > > >

> > > > mjh

> > > > " The Basil Book "

> > > > _http://foxhillfarm. us/FireBasil/ _

> > > > <http://foxhillfarm. us/FireBasil/ _

> > > <http://foxhillfarm.us/FireBasil/_>>

> (http://foxhillfarm.

> us/FireBasil/

> > > > <http://foxhillfarm. us/FireBasil/

> <http://foxhillfarm.us/FireBasil/>>)

> > > >

> > > > Do you think Franco is good??? Will he treat

> without the

> antibotics??

> > > > Do you

> > > > think Franco is good??? Will he treat without

> the antibotics??

> <WBR>?

> > > > I am

> > > > open. For me, since I have had a virus since

> 02 which causes me

> nerv

> > > >

> > > > [Non-text portions of this message have been

> removed]

> > > >

> > > >

> > >

> > >

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi, Gena.

When you started posting here, I thought your name was familiar, and

now I've looked in my files and I see that we corresponded a little

over six years ago!

Well, I'm still working on trying to understand these disorders, and

I'm sorry to learn that you are still suffering from them!

I think I've made some progress in understanding since then, and I'm

now suggesting that people with CFS check into the treatments used

in autism. If you want to track what I've been doing since we

corresponded, you might check some of the references in message

number 100186, which I wrote to Kay on this list today.

Rich

> > > > >

> > > > > Be really wary of Neurontin. It is primarily a

> > seizure drug and

> > can have

> > > > > some very nasty side effects. My late son,

> > with significant

> > seizure

> > > > > disorder,

> > > > > was on it for a while about ten years ago.

> > Just be careful and

> > > > understand

> > > > > what the risks are.

> > > > >

> > > > > VIral nerve pain suggests a Herpes family

> > member leading to

> > > > shingles. The

> > > > > herb officinalis in tincture form made

> > from the fresh

> > herb is

> > > > > very

> > > > > helpful in dealing with that virus family.

> > Another option liked

> > by Dr

> > > > > McCandless is Olive Leaf Extract of a certain

> > kind.

> > > > >

> > > > > Hope this helps

> > > > >

> > > > > mjh

> > > > > " The Basil Book "

> > > > > _http://foxhillfarm. us/FireBasil/ _

> > > > > <http://foxhillfarm. us/FireBasil/ _

> > > > <http://foxhillfarm.us/FireBasil/_>>

> > (http://foxhillfarm.

> > us/FireBasil/

> > > > > <http://foxhillfarm. us/FireBasil/

> > <http://foxhillfarm.us/FireBasil/>>)

> > > > >

> > > > > Do you think Franco is good??? Will he treat

> > without the

> > antibotics??

> > > > > Do you

> > > > > think Franco is good??? Will he treat without

> > the antibotics??

> > <WBR>?

> > > > > I am

> > > > > open. For me, since I have had a virus since

> > 02 which causes me

> > nerv

> > > > >

> > > > > [Non-text portions of this message have been

> > removed]

> > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Gena, I am using (only several days in) Luteolin for HHV-6 as

recommended by a Dr.

Gail

Gena Castanon wrote:

>

> Hi Bill and everyone out there,

>

> I just noticed your thread about the Luteolin and the

> thought that it may be being used for HHV-6.

>

> Does anyone know if Luteolin had helped anyone with

> HHV-6?

>

> I am a sufferer of fibromyalgia/ cfs for seventeen

> years. (A severe -debilitating case)

>

> I am presently seeing a doc who found several things

> wrong:

> high crp-12/

> high angiotensin II/

> d-dimer/fibrogen/ fibrin/

> low potassium/low magnesium

> anemia/

> very low Growth Hormome (level of an

> eighty year old)/

> very low normal dhea/

> very low normal

> pregnenelone/

> super high HHV-6 count (around 165 I think-and

> currently ACTIVE/

> high Epstein-Barr/

> High CMV-

>

> I also tested positive for mycoplasma

> fermentes/hominis about six years ago and antibiotic

> treatment didn't help-

> and was diagnosed with chronic lyme but three more

> years of antibiotics only made me worse-

>

> Currently-I have tried heparin shots for the

> fibrin/fibrogen hypercoagulation prob. but I just felt

> worse on it. Also, my neutrophils quadrupled after

> only a few weeks on it. And I believe the heparin was

> causing that and assume it's not good -so have given

> heparin a break.

>

> I tried an enzyme supp. he offered but had a very bad

> brain reaction to it-sudden

> irritation-anger- depression- so can't take that.

>

> I am taking iron now for the anemia.

>

> I haven't been able to tolerate a magnesium/potassium

> supplement-it makes me real sick with-joint pain

> everywhere-worsenin g of fibro muscle pain and

> endometiosis flare attacks.

>

> I have had some up and down success with DHEA.

> It has given me a normal sleep cycle and some good

> days for the first time in seventeen years where I

> have much more energy and less pain.

>

> However, it isn't always consistent and I have had

> some break through peripheral neuropathy at times as a

> side effect with it (though not lately) and am trying

> to take it only three times a week because it really

> works-when I got my blood back my dhea went from low

> levels to over high levels.

>

> I also was given naturally compounded thyroid

> medication for supposed hyperthyroid- though actually,

> when I look at my test myself-I look like I might be

> heading more towards hyperthyroid. However, my

> symptoms and weight lead much more towards hypo.

>

> Anyhow, when I first tried the thyroid med it made me

> crash horribly. It magnified my fibro pain hugely and

> my extreme fatigue became like someone had just fed me

> anesthesia and I passed out for awhile.

>

> However, after being on the DHEA for awhile-I have

> been trying the thyroid again all this week and am

> getting some improvement with it already-mainly with

> quite a bit more energy which I never have. I'm still

> being cautious and watching for side effects.

>

> When I go back to my doc I'm going to have a heart

> stress test and he is going to talk to me about

> treating my HHV-6 with anti-virals- he said it was

> important that my hormones were right though.

>

> My big question is: has anyone out there on this list

> tested positive for a high HHV-6 count? And, if so,

> have any of you tried anti-virals for it?

> I've done some research on it and realize it may be

> difficult to treat and that the only real promising

> way is to use the strong anti-viral by i.v. called

> ganclivor (spelling?) that can have really bad side

> effects.

> I was wondering if valtrex could at least help some .

>

> Also, I've heard the anti-virals can be hard on your

> liver?

>

> Sorry about the very long e-mail but I'm still fairly

> new and have never posted what was really going on

> with me.

>

> I really have learned from this list already and am

> very appreciative of everyone on the list and the

> information and support they provide.

>

> Take care.

> Gena

>

> --- winsomme <winsomme (DOT) com <mailto:winsomme%40>> wrote:

>

> > i think it is actually Luteolin.

> >

> > here is a link i found:

> >

> > http://www.raysahel ian.com/luteolin .html

> <http://www.raysahelian.com/luteolin.html>

> >

> > thanks

> > bill

> >

> >

> >

> > > > >

> > > > > Be really wary of Neurontin. It is primarily a

> > seizure drug and

> > can have

> > > > > some very nasty side effects. My late son,

> > with significant

> > seizure

> > > > > disorder,

> > > > > was on it for a while about ten years ago.

> > Just be careful and

> > > > understand

> > > > > what the risks are.

> > > > >

> > > > > VIral nerve pain suggests a Herpes family

> > member leading to

> > > > shingles. The

> > > > > herb officinalis in tincture form made

> > from the fresh

> > herb is

> > > > > very

> > > > > helpful in dealing with that virus family.

> > Another option liked

> > by Dr

> > > > > McCandless is Olive Leaf Extract of a certain

> > kind.

> > > > >

> > > > > Hope this helps

> > > > >

> > > > > mjh

> > > > > " The Basil Book "

> > > > > _http://foxhillfarm. us/FireBasil/ _

> > > > > <http://foxhillfarm. us/FireBasil/ _

> > > > <http://foxhillfarm. us/FireBasil/ _

> <http://foxhillfarm.us/FireBasil/_>>>

> > (http://foxhillfarm.

> > us/FireBasil/

> > > > > <http://foxhillfarm. us/FireBasil/

> > <http://foxhillfarm. us/FireBasil/ <http://foxhillfarm.us/FireBasil/>>>)

> > > > >

> > > > > Do you think Franco is good??? Will he treat

> > without the

> > antibotics??

> > > > > Do you

> > > > > think Franco is good??? Will he treat without

> > the antibotics??

> > <WBR>?

> > > > > I am

> > > > > open. For me, since I have had a virus since

> > 02 which causes me

> > nerv

> > > > >

> > > > > [Non-text portions of this message have been

> > removed]

> > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

> >

>

> ____________ _________ _________ _________ _________ __

>

[Guest guest]

MJH-I agree about the dangers of Neurontin. My pain doc told me

2 years ago that he had tried it extensively and was through w/ it

do to lack of positive results.

Do you have any concrete references that " Viral nerve pain suggests

a Herpes family member " being the cause of pain. We all know that

shingles causes pain, but aren't you over-reaching to suggest a

cause and remedies that are unproven and moreover have failed to

help many of us?

The reason I bring this up is not to be critical, it is simply that

I have spent thousands on herbs that I read about in health store

magazines, and I ended up either throwing them out after a few years

or they are still unused in a cabinet somewhere.

It seems that we keep trying herb after herb and nobody has really

gotten long term positive results. Think astragalus, kava kava,

shitake, rhodeola rosea, even olive leaf extract, the list goes on

and on.

Respectfully,

Mike C

Be really wary of Neurontin. It is primarily a seizure drug and

> can have

> > > > some very nasty side effects. My late son, with significant

> seizure

> > > > disorder,

> > > > was on it for a while about ten years ago. Just be careful

and

> > > understand

> > > > what the risks are.

> > > >

> > > > VIral nerve pain suggests a Herpes family member leading to

> > > shingles. The

> > > > herb officinalis in tincture form made from the

fresh

> herb is

> > > > very

> > > > helpful in dealing with that virus family. Another option

liked

> by Dr

> > > > McCandless is Olive Leaf Extract of a certain kind.

> > > >

> > > > Hope this helps

> > > >

> > > > mjh

[Guest guest]

Gena

you might want to look at this article:

http://www.immunesupport.com/library/showarticle.cfm/ID/7152/

it talks about an infectious disease DR at Stanford who is using a

drug called Valcyte to treat HHV-6 in people with CFS.

this is different than Valtrex.

thanks

bill

> > > > >

> > > > > Be really wary of Neurontin. It is primarily a

> > seizure drug and

> > can have

> > > > > some very nasty side effects. My late son,

> > with significant

> > seizure

> > > > > disorder,

> > > > > was on it for a while about ten years ago.

> > Just be careful and

> > > > understand

> > > > > what the risks are.

> > > > >

> > > > > VIral nerve pain suggests a Herpes family

> > member leading to

> > > > shingles. The

> > > > > herb officinalis in tincture form made

> > from the fresh

> > herb is

> > > > > very

> > > > > helpful in dealing with that virus family.

> > Another option liked

> > by Dr

> > > > > McCandless is Olive Leaf Extract of a certain

> > kind.

> > > > >

> > > > > Hope this helps

> > > > >

> > > > > mjh

> > > > > " The Basil Book "

> > > > > _http://foxhillfarm. us/FireBasil/ _

> > > > > <http://foxhillfarm. us/FireBasil/ _

> > > > <http://foxhillfarm.us/FireBasil/_>>

> > (http://foxhillfarm.

> > us/FireBasil/

> > > > > <http://foxhillfarm. us/FireBasil/

> > <http://foxhillfarm.us/FireBasil/>>)

> > > > >

> > > > > Do you think Franco is good??? Will he treat

> > without the

> > antibotics??

> > > > > Do you

> > > > > think Franco is good??? Will he treat without

> > the antibotics??

> > <WBR>?

> > > > > I am

> > > > > open. For me, since I have had a virus since

> > 02 which causes me

> > nerv

> > > > >

> > > > > [Non-text portions of this message have been

> > removed]

> > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Herbs will not touch my nerve pain. I wish they would. I have tried them for

years, still to no avail.

Janet

in San Diego

yakcamp22 <yakcamp22@...> wrote:

MJH-I agree about the dangers of Neurontin. My pain doc told me

2 years ago that he had tried it extensively and was through w/ it

do to lack of positive results.

Do you have any concrete references that " Viral nerve pain suggests

a Herpes family member " being the cause of pain. We all know that

shingles causes pain, but aren't you over-reaching to suggest a

cause and remedies that are unproven and moreover have failed to

help many of us?

The reason I bring this up is not to be critical, it is simply that

I have spent thousands on herbs that I read about in health store

magazines, and I ended up either throwing them out after a few years

or they are still unused in a cabinet somewhere.

It seems that we keep trying herb after herb and nobody has really

gotten long term positive results. Think astragalus, kava kava,

shitake, rhodeola rosea, even olive leaf extract, the list goes on

and on.

Respectfully,

Mike C

Be really wary of Neurontin. It is primarily a seizure drug and

> can have

> > > > some very nasty side effects. My late son, with significant

> seizure

> > > > disorder,

> > > > was on it for a while about ten years ago. Just be careful

and

> > > understand

> > > > what the risks are.

> > > >

> > > > VIral nerve pain suggests a Herpes family member leading to

> > > shingles. The

> > > > herb officinalis in tincture form made from the

fresh

> herb is

> > > > very

> > > > helpful in dealing with that virus family. Another option

liked

> by Dr

> > > > McCandless is Olive Leaf Extract of a certain kind.

> > > >

> > > > Hope this helps

> > > >

> > > > mjh

[Guest guest]

Mike C

I have wasted many thousands of dollars on pharmaceuticals these past 16

years that either made me worse or had no effect. I am gratetful to have

options that work for me and cost a whole lot less and have fewer side effects.

What I post here is what works for me, worked for my son and/or is

recommended by docs I respect.

Shingles is a Herpes viral family member.

J McCandless, MD, successfully uses olive leaf extract, lauricidin and a few

other natural substances like virastop to deal with viral issues associated

with autism. Other docs also recommend natural substances to deal with

viruses, bacteria fungal issues instead of pharmaceuticals.

As I've posted here many times over the last five years, I found some

research in Sept 2000 by Lerner, MD, on HHV-6 that mentioned it was a

Herpes virus. THis was the first inkling I had that my significant health

issues

might have an underlying viral cause and my only clue was persistent cold

sores. I had not been tested for viruses at that point.

Having nothing to loose, I begn to make and take officinalis

tincture in Sept 2000.

When I saw my rheumatologist in Feb 2001 I asked her to test me for viruses

mentioning Lerner's work and . She tested me for EB and CMV (but not

HHV-6) and in May told my the titres were extremely high. I could not afford

the drug she and Lerner used for this purpose so I tripled my dose of

. Worked for me and the rheumatologist was able to finding supporting

research and had another tool in her quiver to help others in my position.

This same doc put me on SAM-e in late 1999 which truly was a lifegiver

backer to me. The drugs she and others had put me on including several SSRIs

caused severe reactions at fractional doses. The pharmaceutical companies did

not refund my money. So, the SAM-e did the job where the SSRIs miserably

failed.

She and others had also recommended signficiant amount of Magnesium to me.

It took about five years taking many types and doses of Mg without getting

the proposed benefits before I found that the trick for me was Mg in liquid

form. THat significantly reduced my pain among other things. FIve years of

consistent trial and error with one single, simple element.

I haven't experienced sinusitis or bronchitis/pneumonia for several years

and have not required a pharmaceutical antibiotic for a long time.

I am fortunate also to have found docs to treat me that do not limit their

treatment protocols to surgery and pharmaceuticals.

Mike C, I do not know why the herbs you list did not help you as you do not

mention what you were taking them for, what form you took them in, their doses

and the length of time you took them. Good luck to you in finding your

path to higher and better functioning.

mjh

" The Basil Book "

_http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/)

_Re: New Mainstream Rheumatologist Doctor -His Cure for CFS _

(http://us.lrd./_ylc=X3oDMTJxc3Jrb241BF9TAzk3MzU5NzE1BGdycElkAzkxNTc0BG\

dycHNwSWQDMTYw

MDA2MTY0NQRtc2dJZAMxMDAxOTcEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1MTIwNDYyNA--;_

ylg=1/SIG=123dc1uur/**/message/

100197)

Posted by: " yakcamp22 " _yakcamp22@... _

(mailto:yakcamp22@...?Subject= Re: New Mainstream Rheumatologist

Doctor -His Cure for CFS)

_yakcamp22 _ (yakcamp22)

Sat Jun 24, 2006 4:50 pm (PST)

MJH-I agree about the dangers of Neurontin. My pain doc told me

2 years ago that he had tried it extensively and was through w/ it

do to lack of positive results.

Do you have any concrete references that " Viral nerve pain suggests

a Herpes family member " being the cause of pain. We all know that

shingles causes pain, but aren't you over-reaching to suggest a

cause and remedies that are unproven and moreover have failed to

help many of us?

The reason I bring this up is not to be critical, it is simply that

I have spent thousands on herbs that I read about in health store

magazines, and I ended up either throwing them out after a few years

or they are still unused in a cabinet somewhere.

It seems that we keep trying herb after herb and nobody has really

gotten long term positive results. Think astragalus, kava kava,

shitake, rhodeola rosea, even olive leaf extract, the list goes on

and on.

Respectfully,

Mike C

[Guest guest]

Hi Janet,

I am sorry I haven't replied. I am having severe vertigo and almost

unable to function for the last week or so. Lots of cfs patients have

Sjogrens. I would not consider it the main diagnosis.

I really like and respect Franco, but he is heavy on the antibiotics.

I don't know how much he knows about Lyme either.

I just did a quick search of old files for cfs docs in San Diego.

This would be my top choice. He treated my son using some antibiotics

and then Chinese herbs, but I am not sure this address is still

correct.

Dr. Steve , Long Beach,

acting primarily as a consultant (Sheri someone in San Diego)

Home address

4822 Santa Ave

San Diego 92107

Home: 619-977-8996

I found Dr. Fox - no first name or address for cfs

Therese H. Yang, MD, FAAFP - she is good but may not be accepting new

patients http://dyfc.org/Yangmeet.html

This one may have moved, but they used to be good especially for cfs.

Ferre Akbarpour, MD

Immune Institute (596-8822)

Pacifica Hospital Building

Huntington Beach, CA

714-842-1777

714-891-6161

Centre for Special Immunology

11190 Warner Ave. Suite 411

Fountain Valley, CA 92708

P 714-751-5800

F 714-751-5860

>

> HI a,

>

> YOu know, I have looked at Dr. Franco's website and I was

somewhat put off by the antibotic approach he took. My feeling is

that I don't have Lyme. But a, I don't care who is see, I just

want somebody that understands CFS.

>

> Do you think Franco is good??? Will he treat without the

antibotics??? I am open. For me, since I have had a virus since 02

which causes me nerve pain, the best thing that came of of today was

the RX for neurontin.

>

> I agree the guy today is treating it as auto immune. I think he

is comfortable with his protocoll. What do you thiink of his emphasis

on Sjogrens Syndrome???

>

> Thank you for all your help,

>

> Janet

> in San Diego

>

> pjeanneus <pj7@...> wrote:

> Janet,

> This rheumatologist is treating you as if you had an autoimmune

> disease, as you wrote. Plaquinil is often used to treat RA and

lupus,

> etc. It probably has some effect because it kills things like

malaria

> and babesia. Trouble is Plaquinil is a very dangerous drug, really

an

> antibiotic related to quinolones. If it works it is probably

working

> because it kills infections that cause so-called " autoimmune "

> diseases.

>

> Here is a link to the warnings on Plaquinil. If you decide to go

> forward with this be sure to see your opthomologist and have him

keep

> a close watch on your eyesight. Plaquinil has an affinity for eye

> tissue and can destroy the eyes. Most Lyme specialists have quit

> using it and are using Mepron with Zithromax to treat Babesia

instead

> as they much safer.

>

> Why don't you go up to Riverside and see Dr. Franco? He is

> also a rheumatologist who understands cfs.

>

> http://www.igenex.com/innovations3.htm

>

> a Carnes

>

> >

> > Hi All/Rich,

> >

> > Today I went to a rheumatologist here in San Diego who is

suppossed

> to

> > be one of the best. (I had to wait 5 months to get into see him!)

> >

> > This is his cure for CFS:

> >

> > He prescribed Azulfidine EN and says this works as a immune

> modulator.

> > He did tell me this fill affect my folate status and I had just

> asked

> > the group about that, since that seems to be a problem for me. He

> > feels CFS is auto immune. He also discussed quite at length the

> > disease known as Sjogren's syndrome.

> >

> > He also gave me Neurotim (sp) for my nerve pain which I am going

to

> > take unless someone here has had real bad results with it.

> >

> > He took alot of blood work, urine test and told me to come back

in

> one

> > month for the labs and to let him know how I am doing. If I do

ok,

> he

> > is they going to prescribe Plaquenil (hydroxychloroquine)

> >

> > At this point in my life, if I can be " cured " I will try anything

> from

> > mainstream to alternative. I have lived with this beast for 25

> years.

> >

> > Has anyone had experience with this drug??? Any thoughts???.

> >

> > /Rich I would also welcome your feedback.

> >

> > I asked him straight out if he ever had gotten a CFS patient back

> on

> > their feet and he said yes. Keep in mind I don't have alot of the

> > symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

> >

> > Can this protocoll hurt me??? He says it will take about 3 months

> > before I feel a difference.

> >

> > One thing that bugs me where ever I go. Everybody has their own

> > protocoll to try!!! I wish people would think from A-A when

dealing

> > with this and stay open.

> >

> > Thank you all so much for your help.

> >

> > Janet

> > in San Diego

> >

>

>

>

>

>

>

>

[Guest guest]

HI a,

I so understand not feeling good. I do hope you are feeling better. I have

been sorta of waiting for your reply before I made any decisions.

First and foremost, I do think this doc is looking at Sjogren's as a component

and I also feel like he feels CFS is autoimmune. I don't know what to think

about that. Is it??? I know he does not specialize in CFS and he was kinda of a

weird duck. In the middle of the my first appt, he got up, left my chart on the

counter and left me for about 30 minutes. That kinda burned my butt! I also

feel like he did not want to hear what I had to say and had already made up his

mind that he was going to use this protocoll. My feeling is that he uses this on

everyone! (Nurse was ready with the pamphlets on the RX's and Sjogrens)

My deal is: First do no harm! I have fought for my folate status and the

first drug is wants to use will challenge that. The second drup could cause

blindness. Since he sent me to the lab AFTER he gave me the RX's, how does he

know if I am in an autoimmune state or not??? I have lived in the city all my

life. Never had any sign of Lyme, so I am not real gung ho on anitbotics. So far

I have been lucky and not had to take many meds. My genetic test are in to Amy

Yaskow and I am waiting for those. I am also waiting on my Detoxi panel from

Genovations. From what I know about Yang she is heavy into treating for Lyme. I

really don't have the fibro problems so much after adding Vit D, I have more the

chronic fatigue. I am going to fall back and look at your suggestions and then

figure out what I am going to do. At the very least I want a doctor I can talk

to that will work with me. (What is is with doctors that just want to use one

protocoll for everyone????) Where is

personalized medicine??? The only place I see that is in the genetic testing!

a, in your opintion, is CFS an autoimmune problem??? If so and they use

drugs to modulate that, how does one keep the killer cells up???

I want to thank you and all the folks here who have taken time to help me.

Wishing you the very best,

Janet

in San Diego

pjeanneus <pj7@...> wrote:

Hi Janet,

I am sorry I haven't replied. I am having severe vertigo and almost

unable to function for the last week or so. Lots of cfs patients have

Sjogrens. I would not consider it the main diagnosis.

I really like and respect Franco, but he is heavy on the antibiotics.

I don't know how much he knows about Lyme either.

I just did a quick search of old files for cfs docs in San Diego.

This would be my top choice. He treated my son using some antibiotics

and then Chinese herbs, but I am not sure this address is still

correct.

Dr. Steve , Long Beach,

acting primarily as a consultant (Sheri someone in San Diego)

Home address

4822 Santa Ave

San Diego 92107

Home: 619-977-8996

I found Dr. Fox - no first name or address for cfs

Therese H. Yang, MD, FAAFP - she is good but may not be accepting new

patients http://dyfc.org/Yangmeet.html

This one may have moved, but they used to be good especially for cfs.

Ferre Akbarpour, MD

Immune Institute (596-8822)

Pacifica Hospital Building

Huntington Beach, CA

714-842-1777

714-891-6161

Centre for Special Immunology

11190 Warner Ave. Suite 411

Fountain Valley, CA 92708

P 714-751-5800

F 714-751-5860

>

> HI a,

>

> YOu know, I have looked at Dr. Franco's website and I was

somewhat put off by the antibotic approach he took. My feeling is

that I don't have Lyme. But a, I don't care who is see, I just

want somebody that understands CFS.

>

> Do you think Franco is good??? Will he treat without the

antibotics??? I am open. For me, since I have had a virus since 02

which causes me nerve pain, the best thing that came of of today was

the RX for neurontin.

>

> I agree the guy today is treating it as auto immune. I think he

is comfortable with his protocoll. What do you thiink of his emphasis

on Sjogrens Syndrome???

>

> Thank you for all your help,

>

> Janet

> in San Diego

>

> pjeanneus <pj7@...> wrote:

> Janet,

> This rheumatologist is treating you as if you had an autoimmune

> disease, as you wrote. Plaquinil is often used to treat RA and

lupus,

> etc. It probably has some effect because it kills things like

malaria

> and babesia. Trouble is Plaquinil is a very dangerous drug, really

an

> antibiotic related to quinolones. If it works it is probably

working

> because it kills infections that cause so-called " autoimmune "

> diseases.

>

> Here is a link to the warnings on Plaquinil. If you decide to go

> forward with this be sure to see your opthomologist and have him

keep

> a close watch on your eyesight. Plaquinil has an affinity for eye

> tissue and can destroy the eyes. Most Lyme specialists have quit

> using it and are using Mepron with Zithromax to treat Babesia

instead

> as they much safer.

>

> Why don't you go up to Riverside and see Dr. Franco? He is

> also a rheumatologist who understands cfs.

>

> http://www.igenex.com/innovations3.htm

>

> a Carnes

>

> >

> > Hi All/Rich,

> >

> > Today I went to a rheumatologist here in San Diego who is

suppossed

> to

> > be one of the best. (I had to wait 5 months to get into see him!)

> >

> > This is his cure for CFS:

> >

> > He prescribed Azulfidine EN and says this works as a immune

> modulator.

> > He did tell me this fill affect my folate status and I had just

> asked

> > the group about that, since that seems to be a problem for me. He

> > feels CFS is auto immune. He also discussed quite at length the

> > disease known as Sjogren's syndrome.

> >

> > He also gave me Neurotim (sp) for my nerve pain which I am going

to

> > take unless someone here has had real bad results with it.

> >

> > He took alot of blood work, urine test and told me to come back

in

> one

> > month for the labs and to let him know how I am doing. If I do

ok,

> he

> > is they going to prescribe Plaquenil (hydroxychloroquine)

> >

> > At this point in my life, if I can be " cured " I will try anything

> from

> > mainstream to alternative. I have lived with this beast for 25

> years.

> >

> > Has anyone had experience with this drug??? Any thoughts???.

> >

> > /Rich I would also welcome your feedback.

> >

> > I asked him straight out if he ever had gotten a CFS patient back

> on

> > their feet and he said yes. Keep in mind I don't have alot of the

> > symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

> >

> > Can this protocoll hurt me??? He says it will take about 3 months

> > before I feel a difference.

> >

> > One thing that bugs me where ever I go. Everybody has their own

> > protocoll to try!!! I wish people would think from A-A when

dealing

> > with this and stay open.

> >

> > Thank you all so much for your help.

> >

> > Janet

> > in San Diego

> >

>

>

>

>

>

>

>

[Guest guest]

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

From: Janet s

:

" At the very least I want a doctor I can talk to that will work with me.:

That is a no-brainer, Janet. That is subjective. I think you can trust your

own judgement on all this. Seems it doesn't fit right or feel right, does it? It

can be hard to move on, because one so hopes for a helpful doc with an answer.

I don't think anyone here considers cfs as an autoimmune condition.

Prescribing for that before the labs sure sounds weird.

Adrienne

(What is is with doctors that just want to use one protocoll for

everyone????) Where is

personalized medicine??? The only place I see that is in the genetic testing!

a, in your opintion, is CFS an autoimmune problem??? If so and they use

drugs to modulate that, how does one keep the killer cells up???

I want to thank you and all the folks here who have taken time to help me.

Wishing you the very best,

Janet

in San Diego

pjeanneus <pj7@...> wrote:

Hi Janet,

I am sorry I haven't replied. I am having severe vertigo and almost

unable to function for the last week or so. Lots of cfs patients have

Sjogrens. I would not consider it the main diagnosis.

I really like and respect Franco, but he is heavy on the antibiotics.

I don't know how much he knows about Lyme either.

I just did a quick search of old files for cfs docs in San Diego.

This would be my top choice. He treated my son using some antibiotics

and then Chinese herbs, but I am not sure this address is still

correct.

Dr. Steve , Long Beach,

acting primarily as a consultant (Sheri someone in San Diego)

Home address

4822 Santa Ave

San Diego 92107

Home: 619-977-8996

I found Dr. Fox - no first name or address for cfs

Therese H. Yang, MD, FAAFP - she is good but may not be accepting new

patients http://dyfc.org/Yangmeet.html

This one may have moved, but they used to be good especially for cfs.

Ferre Akbarpour, MD

Immune Institute (596-8822)

Pacifica Hospital Building

Huntington Beach, CA

714-842-1777

714-891-6161

Centre for Special Immunology

11190 Warner Ave. Suite 411

Fountain Valley, CA 92708

P 714-751-5800

F 714-751-5860

>

> HI a,

>

> YOu know, I have looked at Dr. Franco's website and I was

somewhat put off by the antibotic approach he took. My feeling is

that I don't have Lyme. But a, I don't care who is see, I just

want somebody that understands CFS.

>

> Do you think Franco is good??? Will he treat without the

antibotics??? I am open. For me, since I have had a virus since 02

which causes me nerve pain, the best thing that came of of today was

the RX for neurontin.

>

> I agree the guy today is treating it as auto immune. I think he

is comfortable with his protocoll. What do you thiink of his emphasis

on Sjogrens Syndrome???

>

> Thank you for all your help,

>

> Janet

> in San Diego

>

> pjeanneus <pj7@...> wrote:

> Janet,

> This rheumatologist is treating you as if you had an autoimmune

> disease, as you wrote. Plaquinil is often used to treat RA and

lupus,

> etc. It probably has some effect because it kills things like

malaria

> and babesia. Trouble is Plaquinil is a very dangerous drug, really

an

> antibiotic related to quinolones. If it works it is probably

working

> because it kills infections that cause so-called " autoimmune "

> diseases.

>

> Here is a link to the warnings on Plaquinil. If you decide to go

> forward with this be sure to see your opthomologist and have him

keep

> a close watch on your eyesight. Plaquinil has an affinity for eye

> tissue and can destroy the eyes. Most Lyme specialists have quit

> using it and are using Mepron with Zithromax to treat Babesia

instead

> as they much safer.

>

> Why don't you go up to Riverside and see Dr. Franco? He is

> also a rheumatologist who understands cfs.

>

> http://www.igenex.com/innovations3.htm

>

> a Carnes

>

> >

> > Hi All/Rich,

> >

> > Today I went to a rheumatologist here in San Diego who is

suppossed

> to

> > be one of the best. (I had to wait 5 months to get into see him!)

> >

> > This is his cure for CFS:

> >

> > He prescribed Azulfidine EN and says this works as a immune

> modulator.

> > He did tell me this fill affect my folate status and I had just

> asked

> > the group about that, since that seems to be a problem for me. He

> > feels CFS is auto immune. He also discussed quite at length the

> > disease known as Sjogren's syndrome.

> >

> > He also gave me Neurotim (sp) for my nerve pain which I am going

to

> > take unless someone here has had real bad results with it.

> >

> > He took alot of blood work, urine test and told me to come back

in

> one

> > month for the labs and to let him know how I am doing. If I do

ok,

> he

> > is they going to prescribe Plaquenil (hydroxychloroquine)

> >

> > At this point in my life, if I can be " cured " I will try anything

> from

> > mainstream to alternative. I have lived with this beast for 25

> years.

> >

> > Has anyone had experience with this drug??? Any thoughts???.

> >

> > /Rich I would also welcome your feedback.

> >

> > I asked him straight out if he ever had gotten a CFS patient back

> on

> > their feet and he said yes. Keep in mind I don't have alot of the

> > symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

> >

> > Can this protocoll hurt me??? He says it will take about 3 months

> > before I feel a difference.

> >

> > One thing that bugs me where ever I go. Everybody has their own

> > protocoll to try!!! I wish people would think from A-A when

dealing

> > with this and stay open.

> >

> > Thank you all so much for your help.

> >

> > Janet

> > in San Diego

> >

>

>

>

>

>

>

>

[Guest guest]

HI Rich,

It's nice that you remembered me. I remember you also.

I hope you are doing better.

Yes, unfortunately, I've become much worse over the

years-but am having some up and down success with side

effects (that I hope I can put up with) with Dhea and

natural thytoid-though I do realize that those things

won't get to the root of my problem. But anything that

can give me some energy or improvement helps

enormously.

I have noticed a lot of your posts and the autistic

treatment.

I will review the e-mail u suggested and see if I can

try any of it and not react hopefully.

Take good care-

Gena

--- rvankonynen <richvank@...> wrote:

> Hi, Gena.

>

> When you started posting here, I thought your name

> was familiar, and

> now I've looked in my files and I see that we

> corresponded a little

> over six years ago!

>

> Well, I'm still working on trying to understand

> these disorders, and

> I'm sorry to learn that you are still suffering from

> them!

>

> I think I've made some progress in understanding

> since then, and I'm

> now suggesting that people with CFS check into the

> treatments used

> in autism. If you want to track what I've been

> doing since we

> corresponded, you might check some of the references

> in message

> number 100186, which I wrote to Kay on this list

> today.

>

> Rich

>

>

> > > > > >

> > > > > > Be really wary of Neurontin. It is

> primarily a

> > > seizure drug and

>

=== message truncated ===

__________________________________________________