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I would appreciate the link, , when you get a chance.

Cheers,

*S*

> > What do you think of this? Is he a crazy, greedy control freak

or

> an

> > Aspie Genius? I recieved this tonite from an e-pal in another

part

> > of the country:

> >

> > *S*

> > Well I just recieved from the LLMD's office a packet of papers

to

> > read through. Bascially outlining the Policy Services & Fees and

a

> > Questionnaire. This is the Doctor's office who behaved poorly on

> the

> > phone w/ me. Anyhow I have written out what they sent me.

> Thought

> > you might find it interesting. This Doctor in Nevada City holds

> the

> > position of " clinical Consultant " at Igenex.

> >

> > So he is between Palo Alto And Nevada City. Outside of the

Nevada

> > City offices there is no phone and no " real " office space, but

> > rented rooms for only 2 days per month. So, if you live near

Palo

> > Alto, you must go to Nevada City at least once, and maybe once

> every

> > three months also.

> >

> >

> >

> > It allows 1 free phone consultation w/in first month of visit.

The

> > intial visit is $350.00 !!

> >

> > Follow up visits are $190.00 maybe required if medication is

> changed.

> >

> > Phone consultations are available after in person visit for

$75/15

> > minutes. !!

> >

> > Antibiotic Injections:

> > Bicillin shot $40

> > Rocephin shot $ 125

> >

> > Prescription Refills:

> >

> > 72 hours in advance

> >

> > New Patients:

> > must have follow up visit w/in 1 month of 1st visit.

> > first weeks are the most difficult and unsettling, many symptoms

> > change rapidly, neccessatating exam and explaination.

> >

> > Maintaining Current Patient Status:

> >

> > By maintaining a 3 months interval time between visits. For

> Proper

> > care, 1 visit every 3 months must be seen by Dr.

> > After 3 months patient will become Inactive.

> > New Patient fee will be applied along w/ in depth reassesment of

> > your status.

> >

> > Cancellation:

> > 48hrs or $50 fee billed.

> >

> > Primary Care Doctor Requirement

> >

> > Duration of the disease Battle:

> >

> > There is no Rigid Time frame, in general the more time has

elapsed

> > the longer the patient will require treatment.

> >

> >

> >

> >

> >

> >

> >

> > Types of Lyme Antibiotic treatment :

> >

> > Oral Meds,

> > Intramuscular shots,

> > intravenous injections

> >

> > Mid Lines

> > Picc Lines

> > Medi ports & Hickman Catheters are kinds of indwelling catheters.

> > There advantages & disadvantages

> >

> > What we expect from Patients:

> >

> > Muscle toning exercise at least 2 x' per week, 20 minutes per

day.

> > Inportant component in combatting Lyme disease. Even if pain

> prevent

> > a rigorous workout must do something. However Aerobic exercise

is

> > potentially dangerous for Lyme patients. Intially one day of

rest

> > between workouts is mandatory.

> >

> > No smoking, must quit.

> >

> > some nutritional supplements are an integral part of the

> treatment.

> > and therapies such as acidopholous are essential. Must protect

> > oneself from harmfull effects of long term antibiotics.

> >

> > Patients must not addres Doctor about payment arrangements. or

may

> > be removed from the pratice. Only through receptionist. Must

pay

> in

> > Full before leaving office.

> >

> > No Alcohol. Detrimental and interacts w/ meds.

> >

> > Avoid Lyme vaccine unless you are absolutely sure you do not

have

> > Lyme.

> >

> > The Doctor is out of town frequently. Hours are irregular.

Monthly

> > calendar will be made available to current patients 1 or 2

months

> in

> > advance.

> >

> > The Reception is only staffed part time.

> >

> > Threats or aggessive behaviour or other forms of Lyme rage.

> >

> > Will not be tolerated, will recieve written warning, subsequent

> > offenses will result in removal from the practice.

> >

> > Antibiotic Doses & side effects

> >

> > Several side effects can lead to possible complications. These

> > include, but not limited to, allergic reactions, stomach,

> intestinal

> > disorders, antibiotic resistant bugs which can turn mild

> infections

> > into catastrphic events, nausea, rashes, visual or hearing loss,

> > drug interactions, liver, kidney damage, nerve damage, immune

> system

> > disfunction and yeast infections.

> > You are assuming the risk if you accept treatment.

> > Several techniques will be used to avoid these complications,

but

> > sometimes they are unavoidable.

> >

> >

> > There is also a page that goes on about:

> >

> > Political Arena

> >

> > Lyme disease and associated diseases are complex & puzzling

> problem

> > that scientists, practioners, and patients are only beginning to

> > understand.

> >

> > Tremendous controversy surrounds the diagnosis and treatment of

> > chronic Lyme.

> >

> > Disagreement w/ the of long term antibiotic treatment. The

> > scientific Media lends little support, very few studies

> illustrating

> > the benefits of long term use.

> >

> > Many doctors have unwillingness or Lack of knowledge to pursue

> Lyme

> > as the primary cause of Patients symptoms. As a result many go

> > undiagnosed or misdiagnosed.

> >

> > It is also true that the conditions, symptoms exist alone

without

> > any relation to Lyme disease, Babesia, Erlichiosis or

Bartonella.

> > In theses case a Rhuematologist or nuerologist many be suited to

> > mange patients care.

> >

> > We will inform you when we believe that your symptoms are not

> Lyme

> > related. A porporton of Patients who come to our practice indeed

> do

> > not have Lyme.

> >

> > Oh they also wrote that it is not just getting a diagnosis of

> wether

> > or not u have Lyme disease but includes an undrstanding of the

> > current state and severity of the disease.

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I think the typos may be my friends' re-typing the whole thing in an

email to me.

Sorry bout that.

*S*

> > What do you think of this? Is he a crazy, greedy control freak

or

> an

> > Aspie Genius? I recieved this tonite from an e-pal in another

part

> > of the country:

> >

> > *S*

> > Well I just recieved from the LLMD's office a packet of papers

to

> > read through. Bascially outlining the Policy Services & Fees and

a

> > Questionnaire. This is the Doctor's office who behaved poorly on

> the

> > phone w/ me. Anyhow I have written out what they sent me.

> Thought

> > you might find it interesting. This Doctor in Nevada City holds

> the

> > position of " clinical Consultant " at Igenex.

> >

> > So he is between Palo Alto And Nevada City. Outside of the

Nevada

> > City offices there is no phone and no " real " office space, but

> > rented rooms for only 2 days per month. So, if you live near

Palo

> > Alto, you must go to Nevada City at least once, and maybe once

> every

> > three months also.

> >

> >

> >

> > It allows 1 free phone consultation w/in first month of visit.

The

> > intial visit is $350.00 !!

> >

> > Follow up visits are $190.00 maybe required if medication is

> changed.

> >

> > Phone consultations are available after in person visit for

$75/15

> > minutes. !!

> >

> > Antibiotic Injections:

> > Bicillin shot $40

> > Rocephin shot $ 125

> >

> > Prescription Refills:

> >

> > 72 hours in advance

> >

> > New Patients:

> > must have follow up visit w/in 1 month of 1st visit.

> > first weeks are the most difficult and unsettling, many symptoms

> > change rapidly, neccessatating exam and explaination.

> >

> > Maintaining Current Patient Status:

> >

> > By maintaining a 3 months interval time between visits. For

> Proper

> > care, 1 visit every 3 months must be seen by Dr.

> > After 3 months patient will become Inactive.

> > New Patient fee will be applied along w/ in depth reassesment of

> > your status.

> >

> > Cancellation:

> > 48hrs or $50 fee billed.

> >

> > Primary Care Doctor Requirement

> >

> > Duration of the disease Battle:

> >

> > There is no Rigid Time frame, in general the more time has

elapsed

> > the longer the patient will require treatment.

> >

> >

> >

> >

> >

> >

> >

> > Types of Lyme Antibiotic treatment :

> >

> > Oral Meds,

> > Intramuscular shots,

> > intravenous injections

> >

> > Mid Lines

> > Picc Lines

> > Medi ports & Hickman Catheters are kinds of indwelling catheters.

> > There advantages & disadvantages

> >

> > What we expect from Patients:

> >

> > Muscle toning exercise at least 2 x' per week, 20 minutes per

day.

> > Inportant component in combatting Lyme disease. Even if pain

> prevent

> > a rigorous workout must do something. However Aerobic exercise

is

> > potentially dangerous for Lyme patients. Intially one day of

rest

> > between workouts is mandatory.

> >

> > No smoking, must quit.

> >

> > some nutritional supplements are an integral part of the

> treatment.

> > and therapies such as acidopholous are essential. Must protect

> > oneself from harmfull effects of long term antibiotics.

> >

> > Patients must not addres Doctor about payment arrangements. or

may

> > be removed from the pratice. Only through receptionist. Must

pay

> in

> > Full before leaving office.

> >

> > No Alcohol. Detrimental and interacts w/ meds.

> >

> > Avoid Lyme vaccine unless you are absolutely sure you do not

have

> > Lyme.

> >

> > The Doctor is out of town frequently. Hours are irregular.

Monthly

> > calendar will be made available to current patients 1 or 2

months

> in

> > advance.

> >

> > The Reception is only staffed part time.

> >

> > Threats or aggessive behaviour or other forms of Lyme rage.

> >

> > Will not be tolerated, will recieve written warning, subsequent

> > offenses will result in removal from the practice.

> >

> > Antibiotic Doses & side effects

> >

> > Several side effects can lead to possible complications. These

> > include, but not limited to, allergic reactions, stomach,

> intestinal

> > disorders, antibiotic resistant bugs which can turn mild

> infections

> > into catastrphic events, nausea, rashes, visual or hearing loss,

> > drug interactions, liver, kidney damage, nerve damage, immune

> system

> > disfunction and yeast infections.

> > You are assuming the risk if you accept treatment.

> > Several techniques will be used to avoid these complications,

but

> > sometimes they are unavoidable.

> >

> >

> > There is also a page that goes on about:

> >

> > Political Arena

> >

> > Lyme disease and associated diseases are complex & puzzling

> problem

> > that scientists, practioners, and patients are only beginning to

> > understand.

> >

> > Tremendous controversy surrounds the diagnosis and treatment of

> > chronic Lyme.

> >

> > Disagreement w/ the of long term antibiotic treatment. The

> > scientific Media lends little support, very few studies

> illustrating

> > the benefits of long term use.

> >

> > Many doctors have unwillingness or Lack of knowledge to pursue

> Lyme

> > as the primary cause of Patients symptoms. As a result many go

> > undiagnosed or misdiagnosed.

> >

> > It is also true that the conditions, symptoms exist alone

without

> > any relation to Lyme disease, Babesia, Erlichiosis or

Bartonella.

> > In theses case a Rhuematologist or nuerologist many be suited to

> > mange patients care.

> >

> > We will inform you when we believe that your symptoms are not

> Lyme

> > related. A porporton of Patients who come to our practice indeed

> do

> > not have Lyme.

> >

> > Oh they also wrote that it is not just getting a diagnosis of

> wether

> > or not u have Lyme disease but includes an undrstanding of the

> > current state and severity of the disease.

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Of course, I should have realized that. Well, then he gets a half

more point. :-)

penny

> > > What do you think of this? Is he a crazy, greedy control freak

> or

> > an

> > > Aspie Genius? I recieved this tonite from an e-pal in another

> part

> > > of the country:

> > >

> > > *S*

> > > Well I just recieved from the LLMD's office a packet of papers

> to

> > > read through. Bascially outlining the Policy Services & Fees

and

> a

> > > Questionnaire. This is the Doctor's office who behaved poorly

on

> > the

> > > phone w/ me. Anyhow I have written out what they sent me.

> > Thought

> > > you might find it interesting. This Doctor in Nevada City

holds

> > the

> > > position of " clinical Consultant " at Igenex.

> > >

> > > So he is between Palo Alto And Nevada City. Outside of the

> Nevada

> > > City offices there is no phone and no " real " office space, but

> > > rented rooms for only 2 days per month. So, if you live near

> Palo

> > > Alto, you must go to Nevada City at least once, and maybe once

> > every

> > > three months also.

> > >

> > >

> > >

> > > It allows 1 free phone consultation w/in first month of visit.

> The

> > > intial visit is $350.00 !!

> > >

> > > Follow up visits are $190.00 maybe required if medication is

> > changed.

> > >

> > > Phone consultations are available after in person visit for

> $75/15

> > > minutes. !!

> > >

> > > Antibiotic Injections:

> > > Bicillin shot $40

> > > Rocephin shot $ 125

> > >

> > > Prescription Refills:

> > >

> > > 72 hours in advance

> > >

> > > New Patients:

> > > must have follow up visit w/in 1 month of 1st visit.

> > > first weeks are the most difficult and unsettling, many

symptoms

> > > change rapidly, neccessatating exam and explaination.

> > >

> > > Maintaining Current Patient Status:

> > >

> > > By maintaining a 3 months interval time between visits. For

> > Proper

> > > care, 1 visit every 3 months must be seen by Dr.

> > > After 3 months patient will become Inactive.

> > > New Patient fee will be applied along w/ in depth reassesment

of

> > > your status.

> > >

> > > Cancellation:

> > > 48hrs or $50 fee billed.

> > >

> > > Primary Care Doctor Requirement

> > >

> > > Duration of the disease Battle:

> > >

> > > There is no Rigid Time frame, in general the more time has

> elapsed

> > > the longer the patient will require treatment.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Types of Lyme Antibiotic treatment :

> > >

> > > Oral Meds,

> > > Intramuscular shots,

> > > intravenous injections

> > >

> > > Mid Lines

> > > Picc Lines

> > > Medi ports & Hickman Catheters are kinds of indwelling

catheters.

> > > There advantages & disadvantages

> > >

> > > What we expect from Patients:

> > >

> > > Muscle toning exercise at least 2 x' per week, 20 minutes per

> day.

> > > Inportant component in combatting Lyme disease. Even if pain

> > prevent

> > > a rigorous workout must do something. However Aerobic exercise

> is

> > > potentially dangerous for Lyme patients. Intially one day of

> rest

> > > between workouts is mandatory.

> > >

> > > No smoking, must quit.

> > >

> > > some nutritional supplements are an integral part of the

> > treatment.

> > > and therapies such as acidopholous are essential. Must protect

> > > oneself from harmfull effects of long term antibiotics.

> > >

> > > Patients must not addres Doctor about payment arrangements. or

> may

> > > be removed from the pratice. Only through receptionist. Must

> pay

> > in

> > > Full before leaving office.

> > >

> > > No Alcohol. Detrimental and interacts w/ meds.

> > >

> > > Avoid Lyme vaccine unless you are absolutely sure you do not

> have

> > > Lyme.

> > >

> > > The Doctor is out of town frequently. Hours are irregular.

> Monthly

> > > calendar will be made available to current patients 1 or 2

> months

> > in

> > > advance.

> > >

> > > The Reception is only staffed part time.

> > >

> > > Threats or aggessive behaviour or other forms of Lyme rage.

> > >

> > > Will not be tolerated, will recieve written warning,

subsequent

> > > offenses will result in removal from the practice.

> > >

> > > Antibiotic Doses & side effects

> > >

> > > Several side effects can lead to possible complications. These

> > > include, but not limited to, allergic reactions, stomach,

> > intestinal

> > > disorders, antibiotic resistant bugs which can turn mild

> > infections

> > > into catastrphic events, nausea, rashes, visual or hearing

loss,

> > > drug interactions, liver, kidney damage, nerve damage, immune

> > system

> > > disfunction and yeast infections.

> > > You are assuming the risk if you accept treatment.

> > > Several techniques will be used to avoid these complications,

> but

> > > sometimes they are unavoidable.

> > >

> > >

> > > There is also a page that goes on about:

> > >

> > > Political Arena

> > >

> > > Lyme disease and associated diseases are complex & puzzling

> > problem

> > > that scientists, practioners, and patients are only beginning

to

> > > understand.

> > >

> > > Tremendous controversy surrounds the diagnosis and treatment

of

> > > chronic Lyme.

> > >

> > > Disagreement w/ the of long term antibiotic treatment. The

> > > scientific Media lends little support, very few studies

> > illustrating

> > > the benefits of long term use.

> > >

> > > Many doctors have unwillingness or Lack of knowledge to pursue

> > Lyme

> > > as the primary cause of Patients symptoms. As a result many

go

> > > undiagnosed or misdiagnosed.

> > >

> > > It is also true that the conditions, symptoms exist alone

> without

> > > any relation to Lyme disease, Babesia, Erlichiosis or

> Bartonella.

> > > In theses case a Rhuematologist or nuerologist many be suited

to

> > > mange patients care.

> > >

> > > We will inform you when we believe that your symptoms are not

> > Lyme

> > > related. A porporton of Patients who come to our practice

indeed

> > do

> > > not have Lyme.

> > >

> > > Oh they also wrote that it is not just getting a diagnosis of

> > wether

> > > or not u have Lyme disease but includes an undrstanding of the

> > > current state and severity of the disease.

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I couldn't have written it better myself./--- In

infections , " penny " <pennyhoule@y...>

wrote:

> Well, there you go. has a video link. You can check the guy out

> for yourself. Maybe your questions will be answered in the video.

>

> I'd still talk to patients though, find out who has really improved

> and continues to improve, not just patients currently on the band

> wagon. I've been to several great medical geniuses, who, as it turns

> out, their genius was in making money.

>

> penny

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Well, HAD a video link. Regrettably, the California Channel

website has deleted every hearing recorded prior to October of 2004.

This is what we get for entrusting the video history of our state

government to Comcast, a private cable company. No doubt one of

Governor Ahnuld's innovations.

So I get an 'F' for results but hopefully at least a 'C' for effort.

I emailed the archivist on the California Channel requesting the

program, and sent a post out on Lymenet asking if anyone had the

good sense to click " save target as " and download the actual file

when it was available.

Hopefully someone will get back to me, and I'll be able to make it

available. Those hearings werer a revelation to me, and have a

broader value than providing an introduction to the doctor you're

inquiring about.

In the meantime, following Penny's advice is smart and you can do it

easily on Lymenet by just posting your initial query from here -

they'll recognize, as I did, who you're talking about.

S.

> > Well, there you go. has a video link. You can check the guy

out

> > for yourself. Maybe your questions will be answered in the video.

> >

> > I'd still talk to patients though, find out who has really

improved

> > and continues to improve, not just patients currently on the

band

> > wagon. I've been to several great medical geniuses, who, as it

turns

> > out, their genius was in making money.

> >

> > penny

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Thanks , I posted to Lymenet simultaneous with here.

What website was the video on? I can look in the internet archives.

What keywords would I look for ( I do not have this Dr's name, only

my friend's story, so I don't recognize him at all ).

*S*

> > > Well, there you go. has a video link. You can check the

guy

> out

> > > for yourself. Maybe your questions will be answered in the

video.

> > >

> > > I'd still talk to patients though, find out who has really

> improved

> > > and continues to improve, not just patients currently on the

> band

> > > wagon. I've been to several great medical geniuses, who, as it

> turns

> > > out, their genius was in making money.

> > >

> > > penny

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Share on other sites

Any chance you can find a cached copy through a google search? Lots

of times I go to web sites that have been closed, but I click on

the " cached " link, and voila, an old copy comes up. Handy little

trick. Don't know if it works for video though. Probably not.

penny

> Well, HAD a video link. Regrettably, the California Channel

> website has deleted every hearing recorded prior to October of

2004.

> This is what we get for entrusting the video history of our state

> government to Comcast, a private cable company. No doubt one of

> Governor Ahnuld's innovations.

>

> So I get an 'F' for results but hopefully at least a 'C' for

effort.

> I emailed the archivist on the California Channel requesting the

> program, and sent a post out on Lymenet asking if anyone had the

> good sense to click " save target as " and download the actual file

> when it was available.

>

> Hopefully someone will get back to me, and I'll be able to make it

> available. Those hearings werer a revelation to me, and have a

> broader value than providing an introduction to the doctor you're

> inquiring about.

>

> In the meantime, following Penny's advice is smart and you can do

it

> easily on Lymenet by just posting your initial query from here -

> they'll recognize, as I did, who you're talking about.

>

> S.

>

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This is the Internet WayBack Machine:

http://www.archive.org/web/web.php

You can find a lot of things here, if you know what to ask for. That

is why I am wondering what the web might have been.

*S*

> > Well, HAD a video link. Regrettably, the California Channel

> > website has deleted every hearing recorded prior to October of

> 2004.

> > This is what we get for entrusting the video history of our

state

> > government to Comcast, a private cable company. No doubt one of

> > Governor Ahnuld's innovations.

> >

> > So I get an 'F' for results but hopefully at least a 'C' for

> effort.

> > I emailed the archivist on the California Channel requesting the

> > program, and sent a post out on Lymenet asking if anyone had the

> > good sense to click " save target as " and download the actual

file

> > when it was available.

> >

> > Hopefully someone will get back to me, and I'll be able to make

it

> > available. Those hearings werer a revelation to me, and have a

> > broader value than providing an introduction to the doctor

you're

> > inquiring about.

> >

> > In the meantime, following Penny's advice is smart and you can

do

> it

> > easily on Lymenet by just posting your initial query from here -

> > they'll recognize, as I did, who you're talking about.

> >

> > S.

> >

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http://www.calchannel.com/february2004.htm

That's the page indexing the February 04 videotaped hearings. The

link to the media file for the Lyme hearings is:

http://www.calchannel.com/MEDIA/0225E.ram

Thanks for the tip about the Internet WayBack Machine, which I knew

nothing about.

> > > Well, HAD a video link. Regrettably, the California

Channel

> > > website has deleted every hearing recorded prior to October of

> > 2004.

> > > This is what we get for entrusting the video history of our

> state

> > > government to Comcast, a private cable company. No doubt one

of

> > > Governor Ahnuld's innovations.

> > >

> > > So I get an 'F' for results but hopefully at least a 'C' for

> > effort.

> > > I emailed the archivist on the California Channel requesting

the

> > > program, and sent a post out on Lymenet asking if anyone had

the

> > > good sense to click " save target as " and download the actual

> file

> > > when it was available.

> > >

> > > Hopefully someone will get back to me, and I'll be able to

make

> it

> > > available. Those hearings werer a revelation to me, and have a

> > > broader value than providing an introduction to the doctor

> you're

> > > inquiring about.

> > >

> > > In the meantime, following Penny's advice is smart and you can

> do

> > it

> > > easily on Lymenet by just posting your initial query from

here -

> > > they'll recognize, as I did, who you're talking about.

> > >

> > > S.

> > >

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  • 3 months later...

WOW!!! This is soooooo neat Tom!

I have a herpetic whitlow on my left hand which has plagued me since 1986...I got this virus in the lab from a pap smear ( I worked in pathology) aand I always have beleieved it triggered my MS o at least was one of the triggers.There is a suspicion among the med community thta herpes virus has got something to do wit hMS anyway.

How "tragic" that we might really need to eat more brussels sprouts, broccoli and cabbage! hehee- my favourites! I LOVE THESE

Nola

[low dose naltrexone] off topic

Here's a bizarre medical benefit you'll get if you eat lots of broccoli or Brussels sprouts and cabbage

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Thanks! My cards will be in the mail Tommorrow. Merry Christmas! Ya know I

really am upset by the anti- war people. Our nation was attacked and

everyone was gong ho about us going into Iraq. I know it's been along haul

but from the very beginning we all knew it would be. I support the war and

our soldiers. They deserve our love and respect. I always think if I was

under such oppression wouldn't it be worth it all. Just an FYI of How I feel

about the war and supporting our troops.

Ann

( ) Off Topic

This holiday season, I'd like to remind you of our American Military Heroes

who are recuperating from their injuries. If you have extra holiday

greeting

cards, send one or two to those who have sacrificed and thank them for

their

service!

A Recovering American Soldier

c/o Walter Army Medical Center

6900 Georgia Avenue, NW

Washington, DC 20307-5001

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  • 1 month later...

Wow, we were there too over winter break. My husband does some work for

Surfline in Huntington Beach. Wish I knew you and Marcia were down there we

would have asked to have coffee. Maybe next time around.

Aletha

[low dose naltrexone] off topic

>I am in Huntington Beach, CA.

>

>

>

>

>

>

>

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  • 2 weeks later...

, a very similar thing happens to me when I either fall or the massage therapist pushes on my spine or neck the wrong way.(I have now made him aware not to do this) What happens is that my spine gets thrown out of alignment and it leans on a nerve or a lesion and I cannt walk without dragging my leg( alot more than usual) I also have trouble with my writing. I used to think I was having an attack. I found a chiro 3 yrs ago, he gently rotates my atlas and I could stand up a walk out of there back to normal. I did not want someone cracking my bones so I tracked down a doc (there are only 3 In NY) who does this method. It is call NUCCA (National Upper Cervical..... ) do a google on it. It absolutely is facinating and so gentle. Please try it, I bet it will help for sure. Kiki (LDN from 2003)

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Hi , I had some computer problems so don't have access to my

old bookmarks. When I have them up and running I will send you some

good links. One I can recommend off the top of my head is

remedyfind. Brett posted here just recently with the info. It's a

good place to learn what meds. worked for others and what didn't.

I learned there are a few ways ms can affect your hand writing. One

would be tremors that make it difficult to write or type. Another

numbness with pain. I recently got that one and am thinking its

more carpal tunnel related due to all the typing ect.. I was doing

trying to rectify this computers problems. The other problem I have

is cognitive. As strange as it may sound I forget how to write

certain letters. My hands also jerk when I type. So god knows what

I end up with sometimes. *grin*

Does the numbness in your rib cage and back hurt also? That may be

that awful ms hug thing. It does sound like you are having an

exacerbation. I'm no doctor but I would encourage you to see one.

Also make sure the processing of your ldn hasn't changed. Wish I

could offer more. Your sure not alone in the balance thing, the

avonex and copaxone stance. Ditto here!

Take Care

> I find that the best information is from others that have MS. I

have been

> taking 4.5 LDN from Skip's for about 3 yrs. I have to say it is

wonderful,

> the best thing I have found by far! I wouldn't hesitate to

recommend it at

> all. A little history: I have had MS since '94 DX in '97. Did

the Avonex

> (never again) and Copaxone (never again) take supplements and LDN

now only.

> Still walking although I can relate to those who spoke of drunken

sailor or

> toy soldier walking. Have good days and some not so good. By

far, more

> good since the LDN. About 10 days ago a new set of symptoms

started and I

> need your help. Numbness in rib cage and around back, extreme

difficulty

> walking, loss of balance and a foot that wants to drag. I tripped

over the

> hose over a year ago and have lost the ability to write and at

times the

> hand is very shaky. Had an MRI in Nov. and will heal is about 1

year, but

> have been told the handwriting is an MS thing. I kind of believe

it, just

> odd that it started when I fell.

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  • 2 weeks later...

--- In low dose naltrexone , " lorenzo " <clorenzo02@...>

wrote:

>

> Hi Group - I am having an exasberation and need your advise and help! I have

> successfully been on LDN for 3 years and have to admit suprised that this is

> happening. First time in almost 12 years. I really recommend the LDN the

> results are wonderful. I understood that it would stop progression, so am

> in amazement this is happening. Been almost 3 weeks, left side numb, foot

> dragging, trouble with speech the most prominent problems. Trying not to

> panic or freak out, but at times not very successful. My neuro called

> yesterday and these were the options from him. Go to hospital, do 3 days IV

> steriods. Do MRI. Go on " real " medicine (shots) I don't think so!! Need

> advise on ending this nightmare. Vitamins? What to expect? Need your

> help..................

>

> _______________________________,

I assume your LDN is from a reputable pharmacy the uses pure naltrexone powder

and is NOT using any calcium carbonate as your capsule filler. I assume you are

taking 4.5mg. Check with your pharmacy to make sure they have not changed

anything.

If all's okay in the pharmacy department I suggest you see the link below and do

the candida home test. Candida can cause MS flares. Make sure your diet is

Alkaline. All that information is in the candida thread. If I had to chose a

standard treatment I'd do the steroids over the other stuff. First check the

candida.

Ignore the google ads at top.

Low Dose Naltrexone Forum - Check yourself for Candida(yeast overgrowth)...

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1129136093

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Hi Cooky,

Did you mean this message from bg?

Chris.

On a hunch, I did a search on using " Vulvodynia and

Interstitial Cystitis. " Many very interesting hits came up which

you may want to take a look at.

The reason for my doing the search is because of a serious condition

that seemingly no physician over the country was able to treat

effectively -- but Dr. Crook had a great deal of success with these

patients.

Dr. Wm Crook (author of many books on the yeast connection) in his

book, " The Yeast Connection and the Woman " wrote either a whole

chapter or numerous pages on this subject. I didn't have this

malady, but the writing on this made a deep impression.

I encourage you to get a copy of this book from the library OR go to

Amazon.com and order one new or used -- it was not expensive when I

purchased it a number of years ago. It has numerous chapters on

immune disorders. (Also, you might wish to go to a large bookstore

and investigate the indexes of his other books.) He is/was one of

the most respected physicians in the country for turning around

chronic fatigue and other difficult illnesses. He passed away over a

year ago.

He truly saved my life about 12-13 years ago when I just knew I was

not going to make it. Mainstream (so-called the best in Austin)

after two years of treatment had just about wiped me out. It was

only after I went on Dr. Crook's program in his book -- PLUS talked

with him personally and he directed me to find a kindly physician to

prescribe Diflucan for me to take for 3-1/2 months or more, and

monitor how I was doing, that things started turning around.

I did this, and I began getting my life back. I still adhere to his

recommendations, and attribute feeling near-normal for a number of

years now to his work and suggestions. Even while on AP, I managed

to make sure I got two servings a day of a combination of quality

yogurt from the health store, double or triple the powdered

acidophilus dosage, and 1 tablespoon of Flora flaxseed oil

in each serving. That combo kept the lining of my intestines in

condition to absorb nutrients and keep that lining healthy while on

pulsed antibiotics on MWF.

Good luck,

bg

On 18/02/2006, at 6:34 AM, Cooky wrote:

> Hi all,

>

> My daughter is to have surgery for intersitual cystitis and I remember

> reading a post on this site about what to do instead of surgery. I

> misplaced

> this post. Does anyone still have it or know who posted it? I

> appreciate any

> and all suggestions since my daughter does not want to have this

> surgery.

> She is 30 yrs old and has constant UTI's and leaking. The leaking

> bothers

> her a lot because she is very active in sports.

>

> Thanks in advance.

>

> cooky

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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Hi, Cooky!

Sally in Little Rock here.

Hate to hear about your daughter. I did read (and this helped my 70 plus

year old mom) that if you put a tampon in it stops the leaking. Maybe she

could put some kind of vaginal cream on the tampon, as well, to prevent

chafing and yeast infections. Plus, never wear tampons more than 4 hours at

a time, to prevent Toxic Shock Syndrome-isn't being female FUN!?!:(

I don't know what other advice you've had as you posted this a week ago, but

I'm sure you've heard of drinking lots of water and cranberry juice and also

doing Kegel exercises. Kegel(s) are done by contracting your pelvis just as

you would to stop the flow of urine. I think these are taught in LaMaze

(sp?) classes.

Good luck to you and your daughter!

Sally

rheumatic off topic

> http://www.ic-network.com/guestlectures/theoharides1205.html

>

> When my Aby cat had a problem the vet told me to give him glucosamine

> because she suspected interstitial cystitis. He was on an antibiotic for

> a

> UTI and after two weeks had hematuria so then put on Baytril :-(

> Immediately

> when he completed that second round of antibiotics we just gave this nine

> pound cat the Sundown GC we had for our Great Dane. He was on the GC for

> several months. That was years ago and he (knock on wood) has not had a

> problem since.

> The GC does something to protect the bladder wall.

>

>

>

>> Hi all,

>>

>> My daughter is to have surgery for intersitual cystitis and I remember

>> reading a post on this site about what to do instead of surgery. I

> misplaced

>> this post. Does anyone still have it or know who posted it? I appreciate

> any

>> and all suggestions since my daughter does not want to have this surgery.

>> She is 30 yrs old and has constant UTI's and leaking. The leaking bothers

>> her a lot because she is very active in sports.

>>

>> Thanks in advance.

>>

>> cooky

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.375 / Virus Database: 267.15.11/264 - Release Date: 2/17/2006

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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  • 2 weeks later...
Guest guest

This is off topic, but there are many on this group with MS in the

family, including a number new to the experience. Aletha, your husband

was also somewhat recently diagnosed, right? My wife's neurologist

appointments I attend religiously. Those who have not experienced a

major exacerbation as the significant other may not understand. When

's cognitive function is badly affected, and she's the first to

say, she isn't qualified to make her own medical decisions. I keep an

ongoing rapport with the neurologist so if/when (maybe never again, we

can hope) 's mind is afflicted, I don't have to waste time

establishing a rapport. We also have medical dura power of attorneys on

each other in addition to being married. It's a legal document that can

be left on file at the hospital that no one will question. Any time

either of us (usually ) is at a new hospital, we have one made for

each other while there. Every hospital we've been to has their own

forms and someone to administer them.

A sequence of events put in the hospital 4 years ago w/ gall

stones, on pain killers after admission because of it and dehydrated

from vomiting before admission. She was also in an exacerbation, likely

from the stress and fever ( gets a fever when anything goes wrong

with her body). I left late the 2nd night and arrived early the next

morning. I didn't want to leave but she insisted and I had to tend to

her son, his irresponsible father and her day care business. That a.m.

I realized she hadn't urinated since being admitted. Her MS had already

made her unable to feel her bladder. She had been on a 150 mL/hr. drip

for 38 hours, 5.7 liters in and nothing out! I asked for a hat, helped

her out of her drug induced daze to the bathroom and she significantly

overflowed a 1 liter hat, best guess from the sound 1.2 liters. I then

demanded her output be monitored (she has MS, duh!). Very likely that

incident stretched her bladder and it could have blown her kidneys. Her

general practioner REALLY dropped the ball on that one. The nurses

didn't even know she had MS until I told one of them and politely asked

for that fact to be added to her chart so all the nurses would know. I

didn't even get paid for doing that aspect of our doctor's job. She

wasn't our doctor for long after that.

I wouldn't be able to tolerate your situation, Aletha. If 's,

" nero " (I like that) started behaving like that, she would either have

to straighten up or be fired.

Aletha Wittmann wrote:

>Joanna,

>

>I am so sorry that your doctor is so insensitive. It sounds like he has

>lost his since of really helping people. Even my husbands very wonderful

>Nero (in that she is very sweet and caring towards him), will not let me

>speak, she cuts me off in visits. She never looked at the LDN information

>that I presented and she seems to resent my asking questions and being

>involved, even though she says she would not have it any other way when I

>ask if she minds my coming in to the office visit.

>

>I love our general practitioner. She was not available right after was

>diagnosed with MS due to pregnancy leave. Upon her return I told her about

>LDN and how everything went with that product and she was very open minded

>and said that was great. She has her skeptical side, which I think is good

>because she is thinking, and not just following blindly. Her name is Joanna

>too. She is awesome and does a lot of research on everything.

>

>Just remember that there are wonderful doctors out there too and you just

>need to find a better one.

>

>Hang in there kiddo, we are all here for you

>

>

>

>

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  • 4 weeks later...
Guest guest

Wobenzyme is totally different and has no

serrapeptase in it.

Bruce Guilmette, PhD

Survive Cancer Foundation, Inc.

Http://survivecancer.net

Therefore do not worry about tomorrow, for

tomorrow will worry about itself. Each day has enough trouble of its own.

Matt 6:34 (NIV)

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of mykittypaws

Sent: Sunday, April 02, 2006 4:20

PM

low dose naltrexone

Subject: [low dose naltrexone] off

topic

Hello everyone, does anyone know if a product called

Wobenzyme from Germany

have the serapeptase in it? It is suppose to be comparable to Vitalzyme and i

am curious as I take the Wobenzymes. I am experiencing some

new inflamation in my joints. This has come on quire suddenly

and my hands are my business so it warrants my immediate attention.Thanks in

advance for any suggestions. I take Krill, MSM and Glucosamine,. Kathy

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  • 1 month later...
Guest guest

Thanks Kathy

[low dose naltrexone] off topic

Aletha, I am sorry! I didn't really answer your question. Phosphytylserine, phosphytylcholine, sphingomyelin, phosphytyletholamine, are all lipids that make-up the myelin sheath. They also support cognitive functioning. They are important in ms because they change the charge to the cell membrane and numerous studies from Hans Neiper show that they help remyelination to occur and prevent or protect it from further destruction. Best, Kathy

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  • 3 weeks later...
Guest guest

Hi everyone,

I have noticed over the years many of you either have cholesterol problems

or know someone who does. I know of a few different natural meds for this

but I would like to know which ones you all have tried and worked well. My

hubby has a bit of a high cholesterol and I do not want him on allopathic

junk.

I would appreciate any feedack.

thank you,

cooky

AP 9 yrs (wow thats amazing) Clindy IV 7yrs

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Guest guest

Well....thank you very much! (ah gee, now I'm gonna have to be nice...

what kind of 'rugged' Caveman-style image does this portray...sigh)

hmmm...let's see...(confused)...caveman? cave-person? no, to heck

with that 'political' correct bull-soup...Cave-dweller? nope too im-

personal...sigh.

Cap'n Caveman(kinda?)

Re: [low dose naltrexone] I have a question

Not only does Jim look just great everyone, he and his wife are the most wonderful, sweet and kind people you could ever meet. All "blushing" aside.

Aletha

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Guest guest

Cookie...My husband is just a tad on the high side cholesterol wise. I try

to keep his eating healthy and make him take a B complex along with a regular

vitamin and 1000mg grapefruit pectin. They are all supposed to be good for

the heart. Martha

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  • 4 weeks later...
Guest guest

I strongly suspected you were a good person before Cyndi. Now I'm sure

of it.

Cyndi Lenz wrote:

> Lyme is very rare down here- we have our hosts of tick issues -Lyme is

> not one of them. did your dogs have ticks. speaking of goldens- I

> rescue goldens

> www.goldenrescuesouthflorida.com (and have two myself)

> cyndi

> On Jun 17, 2006, at 2:05 AM, Kathy Lintzenich wrote:

>

>>

>> This message is directed to Dave or anyone who has knowledge

>> with Lyme dis-ease. Could I have gotten Lyme in South Florida. I have

>> 2 Golden Retrievers and have bred puppies in the past. Thanks in

>> advance, Kathy

>>

>> _

>> .

>>

>

>

>

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